Limping to the Left

If I'd only known. . .

2011-10-27T21:55:00.002-05:00

I've been a parent for 10 months now. We've all managed to survive. My life revolves around two little people who happily crawl around my house, squealing and tackling each other.

I wanted to talk about what I would have done differently had I known what I know now, but it's sort of too soon for that -- at least concerning the big questions. I'm thinking more on the lines of stuff. My love for stuff stems from my love of AT, which came from having rheumatoid and trying to be a high school student. A pillow made sitting at wooden desks somewhat bearable. Foam tubing made it possible for me to grasp a pencil. Having the right baby stuff is the difference between an easy day and a miserable day, I've found out. And if you're broke and only temporarily employed, as I am, you can't afford to be picky.

There's a lot of stuff that I bought that was useless, a lot of stuff I passed on that I wish I had, and some things that I found out about too late to make it worth my while to buy.

So, if you happen to have a mom with narcolepsy, rheumatoid arthritis, and multiples on your list, you probably know me. But if not, here's what I'd get a new mom with multiples:
1. The Original Arms-Reach co-sleeper

I had a mini-co-sleeper that I got at a flea market, which is significantly smaller than the original. I just couldn't justify the $200 price tag for the original at the time. But man, I should have gone for the original. I used the heck out of my mini. Very soon the babies were too big to fit together so I put my daughter in a yard-sale bassinet and used the mini for my son, who had reflux. It was easy to adjust the legs to have him sleep at an incline. This model also converts to a pack n play when the babies are older -- a useful feature that extends the life and helps justify the price slightly.

I wasn't comfortable co-sleeping, having narcolepsy and all, but this kept the babies close by so I could see them in the "are they breathing" panic attacks I used to have. Other things that would have worked just as well would have been a pack-n-play with the infant bassinet attachment and a crib divider in the middle or the twin pack n play by Graco. But it has terrible reviews. And none of those offered the ability to simply roll over and look at the babies from the bed. Neither did my daughter's bassinet. Reaching over to pick her up out of the bassinet while I was sitting on the bed was very awkward. It was much easier to lift my son from the co-sleeper. I have such good memories of rolling over and staring into my baby boy's eyes in the middle of the night, a connection I didn't get to have with the daughter in the bassinet. (Of course, she also would wake up every time I moved, so maybe having that barrier between us was a good thing.)

Also --
The mini co-sleeper came in an odd size that had me souring ebay for the expensive sheets. (I was convinced that anything but the manufacturer's sheets would smother my babies.) My mom inadvertently put a changing pad cover on the mattress and it fit perfectly. Word to the wise.

to be continued...

On having an Olivia

2011-08-08T16:18:00.006-05:00

My name is Lesley. With a 'y'. That immediately identifies me as a female from the midwest/South in her 30s or so. You can thank the character "Leslie" on General Hospital in the 70s for having the name cross over to female about that time.

I always liked/hated the status of my name on the fringe of popularity. My sisters might find personalized toys at the stores, but I never did.

My mother is Barbara. You can guess which decade she's from without knowing she's my mom. Smack dab in the middle of the Baby Boom. There were several Barbara's in her class.

My kids were going to have unique names. Different. Not trendy. They might not be able to find a toys with their names on it, but that would be made up for by the awesomeness of whatever names I decided to give them.

Explain to me why I have an Olivia. And how every one else in the world has an Olivia? (In fact, "Olivia" was the 4th most popular girl's name in 2010.)And it why doesn't occur to me to mind one little bit?

It might have something to do with the pig. Ian Falconer's original "Olivia" book came out around 2000. I was working with J, who is non-verbal and liked to call classmates "pig" in sign language, giggle, and run off. J has Angelman Syndrome, a wonderful smile, and an inner life that I can only guess at. Olivia in the original book talked very little, mostly to negotiate with her mother over not wanting to sleep. She dreamed of singing opera and being in her favorite Degas painting. She wore people out. She reminded me so much of J with her mysterious inner life, her unwillingness to sleep, and her love for everyone and everything. Olivia remained one of my favorite characters in kiddie literature, but I refused to look at any subsequent books, especially those spun off of the television show.

My cousin had a baby girl and almost named her Olivia. When she changed the name the week before the baby was due, "Olivia" became lodged in my head as a name I liked.

When I found out I was pregnant, I wrote "Olivia due" on my calendar on the due date. Of course, I did not know that I was having an Olivia with special bonus baby Dominic. It just seemed impossible to name her anything else. She was Olivia in my head from the moment I knew I was having a baby. If I'd had two boys, one would have been Olivia. Or I guess Oliver.

On one hand, it's a tribute to J and her spirit. I think sometimes Olivia has channeled the fiesty spirit of both her namesake character and "Big sister" J who made me fall in love with the character. On the other hand, O is her own person and has been from the minute she was born, floppy and struggling to breathe but fighting off any attempts to help her. I like to tell people that she took on a team of doctors and nurses and won. Her little feet still have purple bruises from the IVs 6 months later. There's a toughness and a sweetness about her that's so fun to watch as she grows, even as I curse that stubbornness every time I put her down for a nap, cut her little toenails, or try to wipe her nose. At 2 months, we noticed that she wasn't just absently staring at the T.V. but that she liked watching hockey. At 5 months, I realized that she wasn't accidentally ramming her brother at full speed in the walker -- she was doing it deliberately and loving it. Even her ultrasounds showed her chewing her brother's foot, pulling her own ear, and shaking her head in protest in a way that I recognize over and over again now.

So yes, everyone may have an Olivia. But no one else has my Olivia.
And thank god she's been asleep long enough to let me write this.

Mommy Blogging

2011-07-14T13:03:00.005-05:00

So, yeah, I'm unemployed. When I was a grad student, that wasn't so scary. With two six month old babies, a mortgage, a car-seat friendly car (Nissan Cube, not a mini-van ... yet), this is scary.

I loved special ed and hated it.
I talked too much about what I'd like to do. Someone said "You think with your mouth." Yeah, I do. But in the end, budget cutbacks got me.

I do have a degree in creative writing. I should try to write, bring in some income. But trying to write with the twins around is ridiculous. Trying to shower, brush my teeth, clean the litter box, etc. with the twins around is ridiculous.

If I do find a way to make it work, I've been thinking about blogging. Mommy blogging is big big business. Most mommy blogs are really thinly-veiled advertisement sites anymore, where a company sends a product to the blogger and she reviews it, maybe gives away an extra product. Most of the time, you enter into symbiotic relationships with companies where you get a bonus product for mentioning them on your blog or adding a link to them. Add in some stories about the life of a mom and you have a hobby that gets you free stuff.

I need free stuff. Thank god for free stuff. 6 months later and I feel like my babies are still living off the generosity of family and friends and several big-ass baby showers. I subscribe to all the bargain sites but a wonderful organic onsie for half off is still more expensive than Walmart, garage sale, or hand me down onsies. All those sites really do is make me want stuff we're fine without.

Still, there's a certain amount of prostitution if I go the mommy blogger route. I shouldn't feel bad but I do. Twice now, I've won prizes by entering in facebook contests like "Why do you need this carseat?" and "What's your proudest parenting moment?" I've been truthful but it feels dishonest. Dishonest to the tune of $350 worth of prizes, though. (Oh yeah)

But then again, I'm pretty enthusiastic about products that work for me. That's what love about AT -- I think I even have done some posts on here about how certain products make life with rheumatoid arthritis easier. Will it be all that different if I post a few things about life parenting twins with rheumatoid arthritis? Will it change things if I send an email to the manufacturers of, say, the Baby Ktan and tell them how awesome their product has been? Or what if I -don't- like a product?

And also, there's the exploitation factor. My babies are the most exploited babies on facebook ever. I updated my status by the minute through most of my pregnancy and bedrest out of boredom and now as I raise them, out of just appreciation of how absurd and funny and wonderful and upside down my life with them is. But facebook is a somewhat controlled friends-only place. Do I really want my babies to know I joked about punting them like a football when they were fussy and wrapped in swaddles that made them beautifully football-shaped? Do I want them to know about the happy dance I did when my babysitter came back from vacation?

But, well, mommy needs money. Or at least free products. And mommy needs to write.

P.S. Not sponsored by Baby K'tan. Yet.

6 months later

2011-07-12T12:43:00.002-05:00

Haven't posted in a while. The reasons, hopefully, are obvious.

I'll give you a glimpse of my life right now. I'm sprawled across a play area in our living room that we've created by putting down two blankets and those rubber play mat thingys. I'm on my stomach, on my netbook. Immediately to my right is a bouncy chair where my 6 month old daughter O is happily kicking at the dangling Winnie-the-Pooh toys, although she should be napping. Sprawled out on his back next to her is D, her brother (younger by 3 minutes). He has a binkie in his and is dead asleep -- although less than a minute or so ago, he was wailing in frustration because he wants to crawl and get at toys and he can't.

She won't nap until I rock her to sleep. At that point, he'll be awake. And I think one has a nasty diaper to change. Afraid to disturb the universe to check.

The house looks as if it's been hit by a nasty bib-bottle-baby toy tornado.

I am unemployed. Looking for work for the next school year but if I don't find any by the end of July, I will have to give up the babysitter and loose our spots. (Babysitter is on vacation today).

We all are here. Not totally unscathed but close. Considering how much could have gone wrong, and how much started to go wrong, being here is a bit of a miracle.

Now, to hunt down the poop...

At 27 weeks -- blood sugar and despair

2010-11-14T10:54:00.007-06:00

I'm finding I have little to say about things like disability politics, my job, scientific breakthroughs on the R.A. front. My world is small these days and concentrated mostly on my belly. That both makes me sad and comforts me, lets me know that I am capable of dialing it back, that I'm capable of not mistaking a job for a life, and that it will be okay for the next few years if my world shrinks to the care of these two little people and my little family.

On the other hand, I'm terrified that I will never again care who won an election, never stay late at school because I'm dedicated to my kids (who are someone else's universe and deserve that kind of care). I am scared I'll never write again.

About a week ago, I failed the 1-hour glucose screening with a score so off the charts that I wasn't given the 3 hour test -- I was just flat out diagnosed with gestational diabetes. Fun. Fun. Fun. This reminds me of all of my diet issues from a few summers ago when I was trying to repair the wild blood sugar swings that prednisone and weight gain had given me. I'm finding that things don't affect me in a textbook way and that I really use simple sugars and carbs to help regulate my system. In some ways, they are way more effective than the cheese sticks and mixed nuts I am trying to rely on now.

I can do this for 2and a half more months because I have to, because it's my babies we're talking about. But I couldn't live like this. I remember writing this post and it really summarizes how discouraged I get when I try to control my health through my food. I totally get the flaw in my logic when I say that controlling my food may make no difference in the death rate for R.A. When food issues are so absolutely hard for me, and it might not help in the long run, I want to say "Why try?" Except for the next few months, of course.

I haven't been very good at tagging my posts dealing with food type issues and the research I did when I was diagnosed with high cholesterol and again when I tried to go on the South Beach Diet. I will have to retag them all but here's a list for now.

weight
cholesterol
diabetes
statins

Basically, what it amounts to is that my cravings for certain foods may be linked deeply to the genetic fault that causes my rheumatoid and narcolepsy. That should be good news, should give me hope that I can reverse things by eating the right way. Instead, that crushes me because I really don't think I have the will to do that, and suddenly there's a level of responsibility and self-blame implied there. It's enough to make me run for a Dr. Pepper and a candy bar.

Pregnancy is like RA...

2010-10-10T14:02:00.007-05:00

I'm pregnant. With twins. I'm just at 22 weeks and already my belly-button is threatening to pop out like the "done" indicator on a turkey.

Being pregnant isn't that big of deal. I mean really, it's the act that keeps the species going (besides the act that got me pregnant in the first place) so it's pretty routine, species-wise. My fellow humans have been conceiving, carrying, and giving birth to babies quite routinely for a long, long time.

But for ME, for my subjective existence on this earth, this is a pretty unique 9 months. For one thing, I'm carrying a boy and a girl and suddenly I'm rethinking all my opinions on gender and society at the moment I'm trying to buy onsies. (Really, is it all that bad to want pink things for my girl? Will it kill her? And what about the boy? Is it wrong to not buy him pink things as well?) All of my beliefs on disability and ability are challenged every time I am offered a pre-natal test, or when I decide whether or not to take a medicine.

What I'm finding most baffling and unexpected, but also the most welcome, is how my belly opens doors (well, not literally but it could) and starts conversations. I'm included, I'm asked about how I'm doing, I'm part of the circle of women in the teachers' lounge. I've always felt sort of excluded, no matter where I taught. For one thing, I was "just" an implementer, aide, para, special ed teacher, etc. I wasn't in a classroom of 22 like they all are. My kids are usually the "extra" kids, the ones with disabilities, the ones who are slightly outside the main life of the school. I've also always been the new kid -- job and life circumstances have caused me to job hop, so I've never been in a building more than a year and 1/2. Here, I am new to this small town, new to everyone and their family units, don't have children in football, wrestling, or 4-H. On important things, politics, religion, big ideas in education, etc., I try to keep my mouth shut because I know I will disagree with most everyone. I'm not afraid to speak out, but speaking out when we're trying to choke down lunch is counter-productive.

I'm strangely "one of them" now. I don't understand it but I don't begrudge it either. My big belly invites questions about due dates, names, epidurals, feet swelling. And yeah, I suck up the attention like the giant sponge I'm starting to resemble. This is the most baffling, wonderful, and vomit-inducing few months of my life and I like -- need -- stories of those who have been there before. And everyone is eager to share them.

They are also eager to accommodate me. When I say I need to sit, I get to sit. I bring a bar stool out to duty instead of standing on my feet to direct cars as they pull up and greet/supervise the kids as they come in. I'm late, I'm thirsty, I need a second. My husband too is eager to watch out for me. Which is nice, because I'm becoming more and more impaired physically by these two little aliens who still only weight about a pound a piece.

What I'm finding about becoming more impaired by my little darlings is that I'm reminded of having a rheumatoid flare. Sometimes, for no reason whatsoever, things hurt. The other day, a bad combination of standing too long, a fiber one bar, and two little babies suddenly sitting on my bladder had me walking slowly, painfully, with a pronounced waddle. My stomach was immediately my calling card -- people knew to stay out of my way and even smile sympathetically as I crashed through the grocery store to get my reflux prescription. A few weeks ago, I rode an electric cart through Wal-mart when my feet hurt too badly to consider walking any more. At the mall, I have to sit and rest. It takes too long to go to the bathroom with the layers of maternity clothes. I sometimes feel sleepy or bad for no reason. And all this is understood.

Pregnancy doesn't really prevent me from doing anything, but it makes everything a tiny bit harder. Sorta like rheumatoid. I can never predict what is going to be harder (except bending over to get things off the floor -- that's a given) but I'm always surprised by it. Reflux, foot pain, late for school because I was throwing up? That's the world of the pregnant chick.

What happens next year when I feel bad for no reason other than having rheumatoid? When a knee locks up and I waddle through the grocery store? When I have to use a cart and my handicapped sticker? I'm so grateful that people understand me now and I'm almost angry that I've never had that sort of understanding before and I won't have it again.

The other day, as I was explaining that I'm really hoping to avoid bed rest, a colleague said "What's more important? Your job or the health of all 3 of you?" I can agree that our health is more important, but I've never allowed myself to think like that for more than a day or two. MY JOB is more important because I have to convince my bosses, my colleagues, and everyone else that I CAN do the work, that I'm NOT disabled, that I WON'T be a liability. Suddenly, I'm a ginormous liability and it's okay. It's liberating but strange.

My little sister suffers from debilitating migraines and is in constant danger of losing her job. Her HR director sneered at her, "These headaches of yours are getting old." My sister wanted to say, "Tell me about it." Pregnancy is temporary and wide spread enough that it's okay. It's understood. Bosses, colleagues, loved ones are much less accommodating when it's a condition that doesn't go away in nine months.

I sometimes think about how much harder life itself will be when I'm trying to schlep two babies around. It's so far out of my realm of experience that I can't even imagine it. And I think that's my life with rheumatoid -- no one WANTS to judgmental or frustrated with me when I'm slower or sicker one day than I was the day before. It's just out of their range of experience. At least now I have one more metaphor -- "It's like being pregnant without the belly." Not sure it will get me very far. Meanwhile, I'm enjoying being understood in a way that I never expected.

Alien Invasion

2010-08-30T21:49:00.003-05:00

Pregnancy has done strange things to me. Not that it's a surprise. But as I yield more and more of my body over to the two aliens, and as I become fiercely protective these things who aren't even human yet, just little balls of nerves and bone and developing brain matter, I also become more sure of some of the things that I once argued as a feminist undergraduate philosophy major. These were positions that seemed right to my 22 year old self, but I had no life experience on which to base them.

I find myself even more fiercely pro-choice, even as I find myself deeply attached to every burp, flip, and kick in my growing belly. I was always pro-choice since about the age of 15 or so, once I was able to understand that the issue wasn't about baby-killing but about a woman's right to choose what happens to her body. But somewhere, there was always a twinge of doubt in the back of my mind.

I understand now. This isn't a pregnancy; it's an alien invasion. My moods, my body, my health, my sense of self is increasingly tied up in these two non-beings. How I feel about the world depends on the flood of hormones hitting me at any given time. (I started crying when my husband said he couldn't fix me grilled cheese because of lack of bread). It's a hijacking. I'm sharing my body. It's like the last chapter of "Beloved."

It's okay. I've consented to this take over of my rights, my body, my self.

I can't imagine how horrifying this is for someone who hasn't fully consented to it and does not want it. I've secretly sometimes thought that people with unplanned pregnancies should stick it out and give the baby up for adoption. I now realize what that would entail.

I even ran into a case where someone was terminating a pregnancy based on a child's disability, something I oppose with all my being. But I could not bring myself to feel anything but sadness for her and her impossible choice, even as I've spoken out against selective abortion before. I expected to feel some sense of private condemnation of her, but I could not.

It's a paradox -- many many anti-choice people are mothers who assume because they loved every second of their pregnancies and consented to this invasion of their minds and bodies that everyone else should love it too. I almost think of it as akin to a sex act -- to consent to share your body with someone else does not mean that you would feel the same about the same act if you did not give consent.

Moms with Autoimmune Diseases More Likely to Have Kids with Autism

2010-08-04T22:40:00.003-05:00

Moms with Autoimmune Diseases More Likely to Have Kids with Autism

From Arthritis Today
7/21/09

[...]Children of mothers with celiac disease had a 197 percent increased risk of autism, while children of mothers with rheumatoid arthritis had a 56 percent increased risk. Those with moms who had type 1 diabetes had a 114 percent increased risk.[...]

One more thing to worry about.

at 7 weeks and 5 days

2010-07-11T15:07:00.003-05:00

The twins are growing. I'll post my second ultrasound photo that shows that they are definitely two humanoid alien beings growing inside me. I go back when I'm 11 weeks and hopefully we'll be able to see the sex of the babies.

I had my second appointment where the doctor and I talked about the risk of Down Syndrome. I'm in a strange situation in that I want to know if I'm having a baby with Down Syndrome, but only because I want to be prepared. I will be over 35 when I deliver. (Hopefully. My little aliens better stay put till after my birthday!!!) I especially worry about the medical implications of any chromosomal condition. Heart and cardiac conditions are linked to Down Syndrome. Trisomy 18 scares me even more because children with Trisomy 18 typically don't survive very long. I can deal with long term disability, but not with death. I've never been good at that.

We decided to forgo the screening because I would not discontinue the pregnancy regardless of the outcome. And therein is the heartbreak in prenatal screening -- knowledge but no power. I remember being at the Canadian Angelman Syndrome Society conference in 2004 and hearing about a microarray -- a way to screen prenatally for Angelman as well as many other syndromes. I was horrified. In a society that devalues the lives of disabled people, where inclusion has made great inroads, but hasn't done enough yet, how could anyone make a fair decision regarding the life of a disabled fetus -- not yet a person, but already a diagnosis?

Then, in 2006, I heard some researchers talking about the possibility of giving pregnant women who were carrying children with AS massive dosages of supplements to methylate the father's silent 15th chromosome. It might allow for some mitigation of the symptoms of Angelman Syndrome.

THAT I could get behind. If prenatal testing let me know that my child was going to have Down Syndrome, and that I could take supplements to decrease the risk of heart involvement, line me up.

It's easy to have my mind on spina bifida, Down Syndrome, etc. etc. because those are some of the hard parts of parenting that will apparent from the start. School bullies and high school proms and drinking and all the others hazards of bringing humans into this world are safely in the future.

In speaking of developmental disabilities in a round about way...
I forgot to mention how helpful the OTIS people have been. I called and talked to an intern about all the medicine I'm on. A few days later, a counselor called me back and we talked for about an hour about each of my medications, the risks, the benefits, and what the studies say. We also talked about vaccines.

There are plenty of studies saying vaccines aren't statistically related to autism. There are plenty of people who swear those studies are lies. I think that statistically, probably, vaccines don't "cause" autism.

But the problem is, babies aren't statistics. At least two people I've met personally with autistic children said their children spiked terrible fevers after their vaccines and then never recovered, but instead started showing more and more signs of autism. These children both have classic Kanner autism, not Asperger's. (However, one child was three when I knew him. All reports now say he is extremely high functioning in academics and things like that, so he might be considered to have Asperger's now).

Then there is the troubling issue of the Hannah Poling case, where a family was given compensation for the underlying metabolic disorder that developed into autism, triggered by her vaccinations.

Then there is the person I worked with, my age, extremely developmentally impaired due to almost non-relenting seizures that started the night she got her vaccinations. I look at her and think "that could be me." Then there is a story told to me by a really trusted supervisor about a healthy baby boy who died the night after his vaccinations.

There are way too many fanatics out there who like to think that vaccines are a government plot to poison us. I don't think that's true. But I do think, like anything else, vaccines are a medical decision that comes with risks and benefits. I will vaccinate, but I will research the schedule and probably do an alternate schedule.

Being pregnant makes me walk the walk more than I expected. I say I love the kids I know with autism, with Angelman Syndrome, with Down Syndrome. Then I have to think about the possibility that my child may face some of these conditions. On one hand, it makes me think I'm a hypocrite because I want everything to be perfect for my babies -- I want them never to have to struggle, never to have to hurt. And disability is a very obvious struggle they must face. I've seen kids bite themselves in frustration, unable to speak, but needing badly to express. That breaks my heart. No one wants that for their child, any child. But on the other hand, I would feel strangely almost honored to have a child with a disability. I'm enough in this world to know how amazingly, heart-wrenchingly HARD it is, every day, and I'm almost afraid to type this, in fear that typing it makes it true. (Sort of like how I watched "Make Room for Multiples" every day the week before I discovered I was having twins.)

As I type this, I keep holding in my head the picture of a kid I had in my class this year. He has Down Syndrome. I love to brag on his academic skills -- his academic development is nothing short of amazing. There are areas he needs to catch up on, but man... he is a rock star. I gave him the same spelling words as all the other 5th graders and more often than not, he'd get an A. But that's not why I love him.
He was just an amazing soul, the kind of kid that makes everyone around him better. His typical classmates, his disabled classmates, teachers, parents... he just has a radiance.

(Not that we didn't have our moments, mind you...)

I've known maybe a dozen people with Down Syndrome in my life to the point that they would know me. There are other people I know with D.S. that I didn't get along with, that I found hard to be around, so I'm not generalizing and expecting every person with D.S. to have this child's gifts. But if my children are anything like this boy, D.S. or not, I would be so blessed.

I wasn't expecting THIS while I was expecting!!!

2010-06-25T19:50:00.004-05:00

TWINS!

This is what I saw on the ultrasound screen June 10th.

Those two little blobs. The OB/GYN immediately shows her student observer. "Isn't it funny, those two in there?" she was saying and I was looking at the screen."So is that the head and that's the body?" I asked, not getting it. "No, it is two. It is twins," she says.

I was already flat on my back or I would have fallen over.

When the appointment was over, I sat in the truck in the parking lot. My phone was not working well so I had to use headphones to call people, and it still sounded garbled. I called Dave, who was out of town, showing the house we're selling to a realtor. I think I heard him fall against the wall. I left a message for my mom.

I blame TLC, all those Make Room for Multiples shows I was watching during the week I found out I was pregnant and withdrawing from provigil by dozing on the couch all day.

That was at 5 weeks because both babies have a yolk sac? Now I'm 8 weeks tomorrow and fearing Vanishing Twin Syndrome, where one twin disappears in the first trimester for no reason. I'm also realizing I will never find moms like me (oh it felt strange to type that!) on the 'net for support -- rheumatoid, twins, over 35 when they are born. (They'd better not come before then!!!) I'm a triple high risk and couldn't be happier!

I also realize that my dreams of accessible parenting may have to give way to whatever crap we can afford from garage sales. Seriously, the Babee Tenda crib from the last post is almost $1000. Times that by two now and it looks like I'm just going to have hurt my back bending into a traditional crib or get one adapted. Those Tripp Trapp chairs that would allow baby to eat with us at the table and not have me leaning over a plastic tray --that idea is now replaced by a standard Graco garage sale high chair. (For $15 bucks mind you! SCORE!) And I think I can safely forget cloth diapers with nice adjustable velcro closures -- my little pooping machines will probably do more than I can keep up with.

Still, I'm happy. I keep hoping those little guys will stay put for at least 28 more weeks -- twins are considered full term at 36. I'd prefer them to hang in there until week 40 though.

Why do certain diseases go into remission during pregnancy?

2010-06-24T19:45:00.002-05:00

ScienceDaily (2010-06-18) -- During pregnancy, many women experience remission of autoimmune diseases like multiple sclerosis and uveitis. Now, scientists have identified a biological mechanism responsible for changes in the immune system that helps to explain the phenomenon.
http://www.sciencedaily.com/releases/2010/06/100617102406.htm

As for me, I'm off all rheumatoid meds for the first time since 1992. Only taking a prenatal vitamin and my sertaline, which I'm tapering off. I feel so amazingly good to be off meds. Those of you who only take meds when you have the cold or flu have no idea!

Accessible parenting

2010-06-08T15:24:00.007-05:00

So, I'm starting to think about what will happen in 8 months.

Ow. Ow. Ow. Ow.

Not good.

But also, the next 18 years. Or specifically, the few months and years after that. And my gimpy arms and wrists and how I'm going to lift and manipulate a screaming, squirming baby in and out of cribs, carseats, strollers, etc. On morning where I can't barely dress myself, I'll have to dress a small person with small snaps and fasteners on the clothes.

It's funny, I know a fair amount about resources for parents of children with disabilities. I have zero ideas on what to do as a parent-to-be with a disability. I remember reading "Time out of Joint" about the author's diagnosis of rheumatoid while raising two children. I don't remember any specifics about how she did it, though. I remember vaguely reading about the use of child carriers in an old edition of "Arthritis Today."

Time to google.

I've always thought that something like a drop-side crib would be helpful. Too bad they're unsafe and about to be banned by Congress. I think I would struggle with a whole drop side anyway.

So, I've been looking elsewhere.

This crib, from Babee Tenda, looks awesome. Too bad it's $1000. I saw it on "Little Parents, Big Charlie." Yes, school is out and yes I watch too much Discovery Channel. Why do you ask?

Also an option for about half the price, is the Quick Change Crib from Innovative Crib Designs. The trap door is meant for mattress removal, but I'll be it works great for baby removal and placement too.

I'm finding a few parenting with disability sites, but most deal with wheelchair parenting.

http://momsonwheels.typepad.com/

A blog by a mom in a wheelchair

http://www.lookingglass.org/

Through the Looking Glass -- an organization serving people with disabilities

Ouch!

2010-06-06T21:28:00.003-05:00

So, my back hurts. I thought that was weird because it's not as if I'm carrying any extra weight around. Then today, I started having really bad menstrual-like cramps.

I know that I shouldn't be blabbing about being pregnant until week 12 because of the risk of miscarriage. Chemical pregnancies, where the egg is fertilized but does not implant, are really common -- I saw an estimate of 50% or so. In a chemical pregnancy, a pregnancy test (or two, in my case) will be positive because the body does have the pregnancy hormone. It just is negative a week or so later and the cycle goes on as normal. So I've been waiting all day, thinking that this week of pregnancy will probably be it for me. Playing at being momma was fun, but my period will start any second. I was crampy and sad.

Thank goodness for google. I'm finding that backache and menstrual-like cramping are common signs of early pregnancy! Suddenly, I was excited again! My first real physical symptoms! YAY! Until now, my symptoms have been vague and more consistent with being narcoleptic and off of my medicine than being pregnant. Aside from two positive pregnancy tests and sudden obsession with every twinge in my body, I'm not any different from how I was two months ago. But the backache -- there's a sign I can point to and say "oh yes, I'm pregnant."

Convinced hubby to walk around the block with me and now I'm going to have some ice cream and go to bed. Life = good.

What to expect while I'm expecting

2010-06-04T18:58:00.006-05:00

sleep.
a lot of it.
So, I've known about junior for a week now. I'll be an estimated 4 weeks along tomorrow. I have taken 1/2 of a provigil in that time, for my drive back from visiting my mom.

I'm tired.
Dead tired.
Like back to the sleep addict days before my provigil, when I could sleep for 14 hours, wake up, then take a nap. My husband isn't home and I'm out of school, so I just sleep.

I've called the OTIS people and they haven't called me back. In the beginning, my doctors and I agreed that I would continue to take provigil while pregnant, even with the slight increased risk. But since I'm not at work and not driving anywhere, it seems downright selfish to risk it. When hubby comes home and I have a reason to at least be ashamed of being asleep more often than awake, I might reconsider.

I still let myself have 1 glass of caffeine a day. That's probably about the same risk as the provigil. That 1 glass though is in the form of Dr. Pepper, which has 40-75 ml of caffeine depending on the size. 200 ml is the "unsafe" threshold.

I've stopped taken my Enbrel. I had originally thought about continuing it throughout pregnancy, but my rheumatologist and I decided I would stop after conception and see how it went from there.

I'm still on my sertaline and plaquenil. The plaquenil still wakes me up every night two hours after I take it with terrible stomach cramps. Lovely.

Oh yeah, and my mom and I are taking grandma back to England in July. I'm not sure I can do this. That will be a month from now, where nausea will kick in in full force if it's going to kick in, and taking care of grandma is always a struggle anyway. She will fuss over me and it will drive me nuts. But I want to see the England fam again and my sister is going to be there.

Okay, enough whining. I'm still amazingly happy over this whole turn of events. Married, buying a house, having a kid -- who would have thought that I would end up being the traditional one of my family?

Links:
Organization of Teratology Information Specialists (OTIS)

Provigil Pregnancy Registry

Well, hello junior

2010-05-29T20:47:00.006-05:00

Surprise! Stay tuned as I blog the scary world of being (barely) pregnant and having rheumatoid arthritis.

A Tribute

2010-03-06T19:24:00.001-06:00

I found this essay somewhere and I thought I'd post it. It was from my first few years in Fayetteville -- maybe 2004.

Pain
It is almost like grief. In my mind, there is another me, the healthy me. Not the me Before, but a me that I never was.

She plays on the graduate student flag football team. Her skill and agility astound. When the play gets too rough, She laughs, rolls up her sleeves, and gets bruised and dirty. When She walks to the bench, She doesn't limp. When the ball comes at her, she doesn’t cringe. Afterwards, She drinks a few beers because, hey, She's young and has a healthy liver. She goes to concerts and dances. And She comes home and grades papers instead of collapsing, exhausted, in a heap.

But She never existed, even before I got rheumatoid arthritis. I was always anemic, a condition very common in people with R.A. And, honestly, I was wimpy. Uncoordinated. Scared. Was that because of this disease that lay dormant in my T-cells, waiting to attack, or was it just me? Is there even a difference?

I want to be her very much. On my porch, there is a barely ridden Trek mountain bike. I bought it off of e-bay two summers ago. It stands, rusting, as a monument to her. There are other monuments – my backpack, an inflatable kayak, a pair of running shoes, and, most importantly, a T-shirt from a marathon She completed. This wasn't fantasy. This really happened. For 26.2 miles, She and I were the same girl. We share some race T-shirts, too, postcards from hard trails we’ve climbed. Those were golden moments, finishing the race on my feet, still running, hips sore, knees spongy, but still running. These were moments where she let me live inside her skin.

I miss her now, on nights like these. My left knee has started that persistent muscle ache. It seems funny that the muscle should hurt so much, when it is actually something happening deep beneath it causing the pain. For some reason, my own immune system cells are hungry. Instead of viruses or bacteria, they have turned to the synovial fluid inside my joints. The left knee is the main course tonight. Any tensing of the muscle around the knee pulls at the tender joint and makes me think I’m going to collapse in a heap. I look for her, but She has fled.

She belongs to the joy, the triumph. She won't sit with me while I type at 4 a.m., knowing that the pain will keep me from sleeping, so I might as well compose an ode to her. She won't sit there in the doctor's office with me as I try to tell him about this nagging pain in my lungs, secretly fearing the possibly-fatal lung and heart complication that some people with R.A. get. She isn't there where I put off the weekly dose of pills one day longer because I can taste them rising the back of my throat when I look at the bottle.

No. I've learned that pain is like grief and you really have to face the void alone. Others can help. I remember one long night when I was in San Diego and my fiance, teaching in Missouri, stayed awake for four hours, talking to me through the pay phone in the dorms, while I cried against a yellow cinder-block wall, unable to stand back up and get to my bed. It helps, but only in the way that a neighbor bringing over a chocolate cake after a funeral helps. Sooner or later, you gotta stand up, let the wave hit, and see if you're still standing.

But I don't blame her for fleeing now. It's hard to be around me when I'm like this. Last week, confused by the dizziness of a swollen knee, I ran smack into a wall before passing out. Then I threw up all over the fiance. My fictional counterpart never would have done that.

Maybe I should get rid of her. She's sort of a pain in the ass. She doesn't understand when I am taking the bus instead of walking. She's always questioning, "Are you hurt or just being a wimp?" She doesn't understand how this constant war waged against my body by my immune system can turn me into a walking zombie. Some days, I'm a sleep addict – all I want is sleep, all I think about is getting more sleep. She bounces a few steps behind me and says, "Speed up, you slow poke! What is WRONG with you, lazybutt? Shouldn't you be grading papers?"

To get rid of her, though, would be a loss I have no words for. Sometimes, I see her in my mind's eye, dancing somewhere, because she can dance, or pedaling away, and I smile. To leave her now would be to leave the idea that one day, on some days, when the combination of elements and medication and mood works for me, I can dance with her. This is why I haven’t dumped her yet, why I am learning to tune out the insults she hurls at me when I take the bus.

After almost 14 years of this, about half of my life, I can see that the pain isn't the challenge anymore. She is my challenge. To reign her in, to not have her dance so far ahead, not to run wild on the football field, but to be happy sitting with me at the sidelines. To have her push but not insult. She is my disease and therefore the dancing partner I never wanted, but she makes me dance all the same.

Posting from my Dell Inspiron mini 10

2010-01-03T19:46:00.001-06:00

Well, I’ve had this for 24 hours now. It’s probably going to be returned when I head to Best Buy next week. Not because of any flaws in the netbook – I’m pretty addicted to it already. But although the earnest Best Buy guy promised it was upgradable and sold us 2 gig of RAM, this mini is definitely NOT upgradable. I woke up this morning to pieces of the Dell all over the table as husband made that discovery. I’ve had my XO for several years now and never took it apart like that – and the XO is designed for that.

Still, the netbook is proof positive that I’m sorta giving up on the XO for now. It is a wonderful piece of technology for what it is designed for. However, if I may state the obvious, it was not designed for my situation. I badly would like to get a stack of XOs for my classroom, but I would eventually come up against something I couldn’t solve – how to print, how to mesh, how to make abiword work. And although I LIKE the fact that I have to rely on the community and learn how to make it work, I’m also realistic about what I have time to do and not do. I’m already struggling at my job because I don’t turn in the TPS reports – I mean the curriculum based measurements – on time, which is whenever they ask for it, which is usually by yesterday. Part of me wants to construct knowledge, but part of me knows that dammit, we don’t have time to construct. My school and my job depend on prepping kids for a test that doesn’t care how they feel about knowledge, or school, or themselves. It just knows 4 things about them, whether it considers them Below Basic, Basic, Proficient, or Advanced. And all my kids are working against disabilities that the test doesn’t care about. Will a bunch of XOs raise test scores? Will the tech people support a bunch of XOs?

It’s too much, I think, for a first year special ed teacher with her job in jeopardy to try. At least this year.

I haven’t given up on XOs. But really, I just need something that works easily all the time. Next year, if I’m still around, I’ll apply for a stack of XOs. But until then, I have to go for ease and what works for my situation.

Netbooks and XOs

2010-01-03T01:06:00.006-06:00

So, after a few years flirtation with my beautiful green XO laptop, I've given in and bought a Dell Inspirion 10 Mini with a purple bike pattern on the top. It runs Windows 7.

So, I'm sitting here, typing in bed, with my Dell when I usually am messing with my XO or, lately, my Palm Pre. But man, life is so much easier with this Dell so far. I'm not fighting the XOs clunky's operating system. I love the XO for what it is. It launched the netbook trend. I still feel fine handing it over to the kids and letting it be experimented with, dropped, drooled on. I'll still be able to throw it in my backpack without worrying about it. I don't think I'll let the kids use my netbook at all.

I'm amazed though, at how easy it is to use, so no fuss, like my XO. But it's so much more functional. I can type on it. It does not make me fight the internet every time I want to get on.

Still, in deference to my XO, I installed Open Office instead of shelling out for yet another copy of Micro$oft Office.

I'm going to see how the Open Office works out with interfacing with school software.

Still thinking about it all...

2009-12-13T23:24:00.004-06:00

I have two more weeks left of Enbrel.

I don't know about my other meds. I don't know if I can function without them.
It's sort of a sad state of affairs to be in this situation, but I've taken multiple - multiple pills every day since I was 15. I get annoyed at people who see medication as a weakness -- for some of us, medication gives us our lives back.

I've found a great site, OTIS, about drugs and pregnancy. Here are the fact sheets for the medicines I'm on or have been on:

Enbrel
Verdict: probably safe, don't really know. Will probably stop 30 days before.
sertraline
Verdict: probably safe, don't really know. If taken during 3rd trimester, baby will have withdrawal. The good news is that it means I don't need to stop in January when I stop everything else. Untreated depression seems to be more risky to a fetus than anti-depressants, but I'm not sure what that means in someone like me, who got the anti-depressants thrown at her in an attempt to regulate the crazy lows of dealing with rheumatoid and narcolepsy. So is it untreated depression if I don't take sertaline or just playing it safe with my baby? I wish I knew.
caffeine Damn. 1-3 Dr. Peppers a day. I'd probably better limit the caffeine so I don't end up with a strung out little fetus.

Strangely, no link for methotrexate, the big bad pregnancy no-no. None for plaquenil, provigil, or simvastatin. Yes, I just told you my drug history.

It just scares me to think that if I do get pregnant, that's now my baby's drug history.

Here's a summary of pregnancy and drugs in RA.

And an article about higher disease activity related to birth weight.

Line

2009-11-14T23:29:00.001-06:00

Line to get H1N1 shot yesterday

Antimalarial Drug Prevents Diabetes In Arthritis Patients, Study Suggests

2009-10-24T15:59:00.003-05:00

This study is about a year old, and it confirms earlier studies.
I also find this reassuring now that I've started plaquenil again.
From Science News Daily, yet another good secondary source for reviewing and interpreting peer-reviewed research:

Antimalarial Drug Prevents Diabetes In Arthritis Patients, Study Suggests
ScienceDaily (Oct. 31, 2008) — The use of an antimalarial medication may prevent the onset of diabetes in patients with rheumatoid arthritis, new Geisinger research shows.

Researchers examined the records of 2,093 Geisinger patients who received treatment for rheumatoid arthritis from 2000 to 2008. The study looked at, among other things, use of the medication hydroxychloroquine (HCQ) and the development of new cases of diabetes in these patients.

HCQ was developed to treat malaria but it has also been used to treat rheumatoid arthritis and other autoimmune diseases.

In patients with rheumatoid arthritis, use of HCQ was associated with a 53 percent reduction in the development of new cases of diabetes, the study found.

"Given the relative safety and low cost of this generic drug, HCQ may be useful in preventing diabetes in other high risk groups," said lead study investigator and Geisinger rheumatologist Androniki Bili, MD, MPH.

Researchers don't know how exactly HCQ prevents diabetes onset but it's suspected that HCQ improves glucose tolerance.

Dr. Bili presented the study's findings Monday at the American College of Rheumatology Annual Scientific Meeting in San Francisco.

About 23.6 million Americans have diabetes, while 1.3 million have rheumatoid arthritis.

People with rheumatoid arthritis are at increased risk for diabetes due to more sedentary lifestyle, chronic inflammation and use of steroid medications that can cause weight gain.

"We should revisit HCQ in the treatment of rheumatoid arthritis because, in addition to its disease-modifying properties, it might prevent the development of diabetes in this high risk group," Dr. Bili said.

Adapted from materials provided by Geisinger Health System, via EurekAlert!, a service of AAAS.

More RA and pregnancy

2009-10-08T21:56:00.003-05:00

For years now, since high school, the National Database for Rheumatic Diseases has been sending me a survey every 6 months. Sitting down to fill out the survey is like visiting the doctor or filling my pill containers every week -- sort of a minute or two of ritualized reflection on this sort of part of my life that is never really center (except in this blog) but always just ... there.

Today they sent me, out of the blue, a survey on pregnancy and RA.

Wow. Strange bit of synchronicity.

Starting plaquenil for the first time since like 1993. Some people pay to highlight their hair. My hair will again be almost white. If it doesn't fall out.

Okay, I'm to eat a meal with plaquenil, according to the nice pharmacist. So, like a good girl, I bought some ice cream.

RA and pregnancy

2009-10-04T23:16:00.007-05:00

Recent information that is to be published in Annuals of Rheumatic Disease points to poor outcomes in pregnancy for women with R.A. -- pre-eclampsia, low birth weight, etc.

Interesting. Troubling if you're 33 and suddenly realizing that the choice on whether or not to have children may not be a choice after all. My immune system may have already made it for me.

When my grandmother, mother, cousin, and I traveled to England in September, I didn't take either of my injectable medications because getting them on and off airplanes were more trouble that they were worth for a 9 day trip, especially since the Enbrel needs refrigeration. When I got back, I quietly stopped taking the methotrexate. Methotrexate, just so you know, is a pregnancy class X drug. They give it to women to help terminate ectopic pregnancies -- it's THAT toxic to a fetus.

Conventional wisdom used to be that a woman needed to be off of methotrexate for 2 years before trying to conceive. I thought about that and decided "No way." I couldn't let myself become that disabled for that long. But now, the Enbrel is working okay and most doctors say 6 months is sufficient. Six months is doable. I think. I hope.

My last methotrexate injection was August 4th.
I need to be off Enbrel for 30 days before trying to conceive, so if I stop that January 4th, I should be cleared for take-off, so to speak, in February.

There are all the bigger issues that come with deciding on whether or not to become a parent. There's the stability and money and career and lifestyle questions (I'm fairly sure that I cannot raise a child on poptarts and Dr. Pepper.) But it's almost as if I'm afraid to think of them because that would be admitting that I'm trying. And that would be setting myself up for what might happen if I find I cannot.

Better then, to take a quasi-scientific interest in drug half lives and metabolic issues than to think about what success or failure might mean.

And if I have this little person, with half my genes, those genes will have RA lurking in the shadows. It's not horrible to have RA. It's not cancer. It's not MS, or muscular dystrophy, or Tay-Sachs, or cystic fibrosis. But to saddle a little person with the possibility -- to knowingly take the risk of passing it on to someone else -- it's a horrible feeling. And although RA isn't genetic in the Mendelian sense, it's well-documented that autoimmune diseases cluster in families and some have genetic basis as well as links to autism.

This is challenging all my feelings about disability and ability. I no longer see disabled children as tragedies -- I have met so many wonderful amazing human beings with all ranges of abilities that I refuse to think there is anything "wrong" with having a child with Angelman, with Down, with cp. I've considered adopting a child with special needs even.

But this is different. It's taking a life that doesn't exist and to knowingly risk inflicting suffering on that life. All I know about that potential human is that he or she might suffer because of my genes. I understand now how terrifying prenatal diagnosis must be to people who are not involved with disabilities and I see how one might equate all disability with suffering. I see how one might be tempted to choose lack of existence over what they see as a painful one, even though I know better intellectually and intuitively, and I have seen every day how those "painful" existences are as joyful or as difficult as anyone else's in the world.

I know better. I know better. I'm going in to school tomorrow to a classful of kids with a variety of different disabilities and I know that their lives are harder than their peers' lives in many ways, but not so hard I would wish for lack of existence as an alternative. There is a stubborn grace to my kids, even the brats -- no, especially the brats -- demonstrate more strength and resilience and humor and humanity than most people ever get to witness. And I have 12 of them waiting for me tomorrow, which will come too soon because I've been up blogging.

Whatever genes I give my kid, if I'm able to have a kid, I hope that he or she gets a fraction of the spirit that the kids in my class have.

Links:
From About.com, which is usually well-researched:
Pregnancy Advice for Women with Arthritis
Women With Lupus And Rheumatoid Arthritis Have Greater Pregnancy Complications

My grandma's social cognition and pillow theft

2009-09-05T23:47:00.002-05:00

August 7 2009
12:53 London time

In bed in a small hot room in Feltham.
My grandmother in a bed a foot from me. She has three pillows; I have one, just so you know.
"I sure wish I had a pillow for my swollen feet" she said not too long ago.
"Grandma, you have two under your head. Do you want me to move one?"
"Well, I like sleeping with two pillows under my head" she said.
I thought if she has a stroke because she didn't have enough elevation in her feet, it will be my fault...

I've had a Bulmers, danced with my cousins while singing "Sweet Caroline" and "Release Me." There's a lot I want to comment about, about past and present, about history of a place and a person and a family, but to make it fit into this blog, I'll talk about language and disability a little bit, specifically, the language of the elderly, or more specifically, the language of the elderly British woman who emigrated to America 64 years ago at the age of 22 who has very sweetly managed to get me to convince her that I don't need my pillow. Of course I do.

That lady is now whispering to herself. I think it's the Ambien, but it's sort of creepy. She once beat the holy hell out of me in her sleep when we had to share a bed on vacation in 1994. Mom ended up paying us to share a bed with her. It started out as $10 a pop and was up to $50 at the end of that long vacation. I still slept on the floor.

Dude, her sleep voice is gravelly and lispy without her teeth. I'm a bit freaked out. She sounds like a demon. If this keeps up, I might go next door to my mom to see if she will continue her subsidies for grandma-induced sleep trauma.

My grandmother has a specific way of social cognition that is almost the opposite of Asperger's. She has always had a composite quality to her, as if she is finding the social role she is expected to play and is playing it. Which can be frustrating and unfortunately makes us doubt her sincerity. Which isn't fair at all I know she's sincere, even when she's acting. The more I know of her history, the more I understand that she was abused by her father, whom she loved, and that she lived through terrible traumas of war, her sister's death, and sepratation from all she loved all at once, I understand her mode of social thinking, of being so eager to please that she is hard to please. Like how she won't ask for the pillow but make it very obvious that she wants it in such a way that I end up begging her to take it. Maddening at times. But damn funny.

When awake, when unsure of herself, when bored, or when wanting to assert that she is important and not to be left out of plans, she has slipped more into the mode that my kids use. She asks where we are going over and over, what we are doing next, what other people are doing, things like that, exactly like my kids in this post. She pretends that things we've discussed for days have not been discussed with her and gets insulted.
Grandma:"What's the plan tonight?"
Mom:"You're spending the night with Janet tonight."
Grandma: "I AM? No one tells me anything."
Mom: "Oh mom, you packed the bag!"
Whether she's pretending, forgot, or just needs that reassurance is hard tell. Then, minutes later, she is insulted when we give her directions. She's senile at one moment and totally competent the next.

It's worse at night, after her ambien. She asks over and over what my mom is doing, even though I'm in the same room with her and not my mom, so I obviously don't know what mom is doing. She asks about over and over about plans too. I think the ambien confuses her, but I also think she's trying to make conversation with her granddaughter, who is tired and really does not want to answer those questions. That's the social over-awareness, almost a paranoia that she's always had, but it is getting worse as she's getting older and is aware now that she needs taking care of.

It's hard to grapple with the fact that my grandma is now someone to make allowances for. She always had some of these qualities about her, but it's distressing now to see her cognition decline. She's not had any major medical trauma, but repeated TIA's, mini-strokes, that have left her slghtly more confused with each attack. She knows it. "Senile, that's what your grandma is," she's said more than once. She's not senile. She has less consideration for her listeners, wants to tell her story and dominate the conversation, and experiences more momentary aphasia than she did before. Those are all normal patterns of language in someone who is 87, but it's my grandma. I don't want her to lose her language, her cognition, her stories. Not yet. I don't want strangers to see her struggle for words, to see her ask her millionth question, and think "that poor old lady." Yet, here in England, among her family, where she's known and loved, it's great to relax a little and let her be. Everyone understands her here and if she's more demanding than she used to be, that's okay. She's 87 years old, their sister who married that handsome, gentle, GI from Missouri and followed him there. She's allowed her quirks. And as I lay here, relieved that her evil-ambien sleep mumbling has dropped off into snores, I wish could rewind and capture all of her stories before they are gone. I know that too soon, I will give anything to have her ask me endless annoying questions again.

And I think that's probably worth the pillow. Maybe.

What? Hearing loss in people with RA.

2009-07-24T00:06:00.002-05:00

Lovely.

Like I needed something else to worry about.

What? Huh?

Hello Class. Nice to meet you. Please don’t kill me.

2009-07-18T00:28:00.001-05:00

So, over the last year of sitting across the table from middle schoolers and saying "Say 'r'" and them saying "wa" and me having no idea how to fix it, I had an epiphany. I was meant to do speech language.
Although I'm not particularly gifted at speech, I love language and my whole academic career has been build on that – since 1995, I've been studying language in some form or another. What my particular weaknesses are as an authority figure (i.e. unable to manage large groups of kids) are mitigated the way the job is structured. It works for me health-wise as well – I can shuffle some groups around if I really can't make it to school or if my fatigue or my feet is making it harder for me to get to a room across the school on time. Time to go back to classes to be an SLP. It's a good feeling to approach a job not sure of what will happen and leave totally confident.

I loved it.

I had one augmentative communicator and one PECS user – well, he wasn't a PECS user until I got him. I knew I loved that sort of communication work. But what I really didn't expect was to love my boys with Asperger Syndrome and high functioning autism. But I did. I fascinated by their language. I had a blast making Superflex movies and playing eye contact games and helping them understand their IEPs.

So, I've been waiting all summer to see what school I'd be in. I heard that it was pretty much a given that I wouldn't be at the middle school, but I didn't internalize that. Of course I could convince them to leave me at the middle school. What would my kids do without me? Or really, what would I do without them?

There was talk about the high school. That would be fine too. I would move up with several of my kids and be there in a few years for the rest.

Two days ago, I was told it was the elementary school. And I was to be the special ed teacher.

I can't deny that I've suffered from classroom envy when I pass by some really cool teaching materials. But I usually get over classroom envy very quickly when I encounter kids in groups larger than 3 or 4. Everyone keeps congratulating me. (Which is how I found out. Nice.) I have a feeling of "Holy cow, Pinocchio; you're a real boy!" My mom is bragging about me. It feels good.

But I am sad. What am I going to do with my collection of Super Duper Phonology decks? And my speech bulletin board decorations?

And I have to work with people again, go by the team schedules, call parents, all of that stuff. Recess duty – dear god. I'll have recess duty. And I've already said what I think of resource in Missouri. It's not resource; it's a mosh-pit dumping ground.

But I got my class roster and I have 11-13 kids and not all will be there all of the time. Even at the end of last year, when a large large number of my kids had their speech minutes drastically reduced, I had twice that and felt blissfully unencumbered. I am in the strange position of having younger kids but ones with more mild disabilities than I'm used to.

I had a couple of kids that I'll really miss at the middle school. I really miss them all, but I am attached to a few. One guy cried and hugged me on the last day – crying is sort of his thing, but still. I never had anyone cry because I left before.

This will be good for me. I will have more respect for classroom teachers and more credibility. I just know how wrapped up I can get and I am afraid that I will not go back to speech. Aside from the small fortune invested in Fun Decks, which will be a big loss if I don't go back, I'm feeling like I've hit my stride, like I'm doing what I was meant to do. And I'm very distressed at leaving it.

But still… I have a classroom of my very own. Always as the speech implementer, I felt like I was someone's apprentice, the junior member of the team. Now I'm on the team.

And I'm still scared to death but excited as well.

Lupus? And Michael Jackson

2009-07-13T20:30:00.002-05:00

Because I must blog about Michael Jackson, because it's apparently The Law of the Blogosphere ™ and because by listening to all his music again, I'm suddenly getting back parts of childhood and I'm really enjoying his music again (sad that this is what It took), I'm going to comment a little.

Michael Jackson was my introduction to homophobia. Sitting on the school bus, I was taught this rhyme:

I pledge allegiance to the flag

Michael Jackson is a f**

Pepsi Cola burnt him up

Now he's drinking 7-up

As a second or third grader, I knew this was somehow "wrong" but I didn't really know why. I still sadly enjoy the rhyme – for a slur, it has a really nice meter.

I remember other things, like hearing Michael Jackson had had hormone shots to make him sound like a woman. (Tenor was not a word in our vocabulary in rural Missouri.) It was common, even by second grade, to say things like "I like his music but I don't like him."

I realize now that this homophobia was an outgrowth of racism. This was rural Missouri. Michael Jackson may have not been the first black man on the radio, but he was the first black man whose posters appeared on the walls of the local white girls, the first who was bigger than life. That was threatening. In a world where I grew up knowing racist jokes and repeating them semi-innocently (I knew they were "bad" but I thought they were funny too) a black man idolized by white little (and big) girls was a threat, going back to the heart of old Southern stereotypes and fears – the black men are after our women and our women might like it. Better to cripple him, mock him, make him strange and meek and not really a man.

What you couldn't do, though, is deny how absolutely awesome his music was, even if pop music wasn't your thing. My dad, who grew up in the South and had much more of a legacy of racial attitudes to overcome than most people appreciate, even secretly admitted to Mom once that he liked "that one song." I think it was "The way you make me feel."

The Michael Jackson action figure eventually made his way into my younger sister's stable of Barbies. My older sister and I both moved on to more "mature" music – she went toward U2 and REM and I went toward heavy metal. He didn't become a joke to us – he was always sort of a joke, a society's way of crippling him. Eventually, we believed it.

Eventually the world believed it. Eventually, the press believed it. Eventually, he believed it. Maybe he always did believe it, I don't know. But by the time the child abuse cases came around, we were ready to believe it. We were ready to believe anything. He slept in an oxygen chamber, had a pet chimp, bought bones of dead people.

We believed anything. Except that he was sick – I mean really chronically ill. Vitaligo? What was that? We all knew he wanted to look white. That's all there was to it.

Now I'm finding out that he had lupus and that he received plaquinel shots. Wow. I think of my time of plaquinel and how my always-pale British skin became absolutely translucent and burned bright red in the slightest sun. I think of how blonde my hair became. I look at my senior pictures and my hair is golden, almost white. Plaquinel will do that. Did it make him so pale?

I don't know what happened to him at the end or why it happened. I'll find out, eventually, I guess, but that means I have to turn on cable news, and I refuse to do that.

Did he have lupus? Did he die of lupus? Or chronic pain from his burns? What a strange sad world when even your medical care is in the hands of yes men, when your doctors aren't able to give you medical advice without having to fight with the trappings of celebrity. Was he killed in his desperate attempt to finally get a good night's sleep? I'm narcoleptic and I understand that life-sucking fatigue-fog.

One man, for 40 years, embodied all of white America's fears and prejudices: he was the Other when it came to race, sexuality, and maybe even ability and disability, chronic illness and wellness. I had absolutely nothing in common with him, wasn't even that much of a fan, but am sad. When all this is over, sleep, fatigue, exhaustion, lupus, burns, chronic illness won't be mentioned. We consider those to be irrelevant facts – doesn't every celebrity have some sort of chronic illness their "doctor" treats them for? We'll talk about celebrity, maybe even race and sexuality fears that were projected onto Michael Jackson, but little will be said about illness. Because really, in some ways, illness is the last American shame. We like sick people but only when they dance bravely for us and are sick at home, with armies of private doctors. We like the Farrah Faucetts who struggle bravely against something that will either kill her or she will beat – a battle with a beginning and, sadly too, an end, not like something chronic that malingers. We don't understand that sickness has its own culture, its own struggle, one that may be equal to the other forces in this man's short life. When thinking about how hard he struggled, his lupus (if it turned out to be true that he had lupus), his burns, and his health will be thought of as some sort of character flaws brought on by celebrity and not something capable of being deadly in its own right.

Good bye Michael. I'm sorry.

What makes the language of people with intellectual disabilities different than typical language?

2009-05-30T19:47:00.003-05:00

I've been reading a lot of Michelle Garcia Winner's stuff. I went ahead and bought about $150 more of her books to use this summer because she's so amazing helpful in understanding what exactly kids with Asperger's and related conditions miss. We tell kids to make eye contact but we never tell them why, for instance, so she has a simple unit about how eyes work and how we know what people are thinking about by where they are looking.

I've just spent a weekend with my Special Olympics team at the State Outdoor games. There were two elementary aged students, two or three high school students, and the rest were young adults (in their 20s, I imagine). My brain hurts. I was constantly overwhelmed by the barrage of language, language, language. Questions, comments, more questions. My previous experiences have been with mostly non-verbal kids, so on one hand, I am profoundly grateful for the squealing, singing, questioning, and pointing out of every store on the 5 hours there and back. But it was also overwhelming. I'm just lucky I'm not the coach – she was constantly barraged by "Hey, look coach!" or "Mrs. __________, where's the bus?"

Since I'm going to be the speech implementer for a fair amount of these athletes during summer school, I began thinking in terms of pragmatics and why the language of these guys was so constantly overwhelming to me. I came to several different conclusions about what marks the speech of these kids and people with intellectual disabilities as "different" and how to teach the skills to help these guys get along. Because, let's face it, if I am overwhelmed to the point of meltdown and this Is my job and my love in life, people without this affinity for my kids will dismiss and escape from them much more quickly than they deserve.

The absolute most important underlying difference is perspective taking in communication. This is well documented in Garcia-Winner's work with people with social-cognitive deficits. Her work focuses on metacognitive strategies for individuals with average (and in many cases, above average) IQs. I think it can be adapted to work with people with mild and moderate intellectual disabilities. "Thinking with your eyes" is a skill that could help with every other difference I've noticed.

One of the most noticeable differences in communication that worked on my nerves this weekend was volume. The ability to look at a situation and know whether it required a small voice of a big voice is really absent in many of my communicators when they are excited. Interestingly, my "yellers" mostly failed the hearing screen.

Another big difference is the urgency of the communication. Every observation, question, or thought that comes to the mind of some of my kids is out of their mouth before they look to see:

If the individual has access to the information
(like, "Coach, is our bus here?" when I'm in the same room as them and cannot see if the bus is here. )
If the individual is doing something else, talking to someone else, or even within earshot. When the coach is trying to get us to breakfast, it's not a good time to ask about supper. Some communication takes priority over others. Similarly, if you are in the back of the bus, you can't carry on a conversation with the coach in the middle of the bus without deafening everyone in front of you.
If the individual needs that info or can see that info for themselves ("Look coach, choo-choo train!" yes, a girl in her 20s said that. But that's followed by the guy behind her "A post-office. Hey coach! It's a post-office." 5 hours up and 5 hours back.) Or if the individual already has the info. For instance, opening ceremonies, police officers carried the torch in. I'm watching and get tapped on the shoulder by someone saying "Hey look! Police officers!" without seeing if I'm looking at the officers too.

Another difference is the persistence of the communication. In the above example, a typical communicator might say "Cool! Police officers!" and drop it there – sort of a comment to no one in particular, but to any partner in the vicinity who wants to pick it up and say "awesome! They have the torch!" This isn't really communicating information but communicating feelings about the information. But in my case, this gentleman pounded me on the shoulder until I removed my eyes from what I was watching and turned my attention to him to say "I see it too," acknowledging that I received the information from him when I could get it from my eyes.

A final difference is asking questions as a way of interacting, even when the answer is obvious. We all do this to some extent and comedian Bill Engvall has a whole routine built around it called "Here's your sign." Example, I'm potting flowers in front of the house and a family friend walks by with fishing poles. I want to say "Going fishing?" but I stop myself just as he asks "Planting flowers?" It's a way to start a conversation and also acknowledge that you see the other person engaged in something fun or unusual.

But my athletes could take this to a new level. 4:30 am, I hear a familiar "What'cha doing?" in my ear.

"Sleeping!" was my not-so-gentle reply. "Get back to bed."

This was constant. I paid for a massage at the massage tent. I have my eyes closed, blissfully away from the heat and sweat of the track meet. I hear one of my athletes: "Are you getting a massage?"

"No" I say. I was pretty grouchy this trip.

I have often broken communication down into three purposes: social closeness, information, sharing wants and needs

Our kids use information exchange as a substitute for social closeness and sharing wants and needs. Instead of saying, "I like Hardees," they will say "Look, it's a Hardees!" Asking for information is also a substitute for social closeness. All of my kids constantly ask where the other one is going and what the others are doing. I often say "ask them." But it's really a way to affirm social closeness and not to be left out of the group.

I work my butt off with vocabulary, receptive, expressive, semantic, syntactic, etc. skills on my kids with intellectual disabilities. But I only really teach pragmatics to my kids with autism and related disorders. I understand why their IEPs are that way – at the beginning, when someone with an intellectual disability begins school, life, speech-language therapy, etc., we just want communication and don't care how we get it. It's hard now, as a middle school implementer, to start shaping communication to be more pragmatically appropriate. It feels like I'm stomping on their individuality. But I'm understanding that for verbal adults with intellectual disabilities, pragmatics are the most important skills for their success in the community.

Also, the lack of content in the speech of adults with mild intellectual disabilities is something I've noticed before. One young woman in my previous job would always talk about the same things at every respite: how good the food was (and it usually wasn't! but she was overwhelmingly complementarily to the cooks), how much fun she had at work/the last dance/the last respite, etc. There were never specifics.

Lack of content in many cases is a simple lack of experience with the world. And some is a lack of perspective taking: what makes people laugh? What makes them just nod their heads and say "uh-huh?"? My friend M, with her left hemisphere removed (which is the language center in most people!) had a really sophisticated communication style and loved in-jokes, word-play, puns. She delighted in things like that and that made her fun to be with. She understood that shared experiences and shared jokes (like naming my car "Mary" and then always referring to it by name) were the type of specifics that build social closeness, not just information or generalities. This is another skill that we need to build in people with intellectual disabilities – what experiences are unique enough to be interesting to a listener? (hint—every post office for 300 miles is NOT that interesting).

A corollary to that is that our guys must have lives that provide content. THAT'S the big challenge. How do you teach someone to speak in specifics when all their days are the same? Kids with disabilities get less experience with the world than their typical peers, but need more.

J.C., who has Angelman Syndrome and is non-verbal, is a pro at this. She will remember a shared joke for years and years and will "repeat" it with a gesture or a sign, like an imitation of how someone sits or stands, and even that disapproving sound my grandma makes. J. knows how to pick out the funny and the usual and use it to "talk" about. Still, though, she can repeat it over and over because lack of access to other content.

My conclusion is that pragmatics and perspective taking isn't an "after the fact" language add on but something that needs to be built in from the beginning. As an important part of those pragmatic skills, we need to teach, and more importantly, provide access to things to talk about.

Obama would get his butt kicked

2009-03-20T22:53:00.004-05:00

From the Boston Herald: I bowl just for fun. The last time I bowled, I think I scored a 245. I actually could kick the president’s butt at bowling. But I wouldn’t make fun of him if I did. -- Colin Davidson, Special Olympics Athlete

My friend M., of Kenny Chesney concert-going adventures, is quite an accomplished bowler.
She's also a special olympian. Would she take Obama down? Probably. Most definitely on the wii but she could put up a good fight at the bowling alley. She has use of one hand and arm, has heavy leg braces, and sees out of 1/2 of one eye. And she had a hemisphere of her brain removed at 3 months old.

And she would bowl a good game with him. We used to bowl a game or two on Sundays, then I'd sit down and she'd bowl one or two more by herself. I miss her terribly now that I've moved.

Today, I am here at my house because I didn't get to go with my Special Olympics basketball team to state competition. My girls didn't get to go to state because they lost two hard-fought games at districts. I won't play with my girls. They kick my butt. I'm scared of their speed and power and determination.

The point isn't that Special Olympics athletes are lousy bowlers and that Obama meant to be self-depreciating. The point is that some Special Olympics athletes are lousy bowlers. Some are awesome. And -- it doesn't matter as much as people think it might. Even Obama's apology indicated that he was making fun of himself by saying he couldn't bowl, like a Special Olympics athlete he presumes can't bowl either.

To be fair, with his 129, he could comfortably kick the butt of a great many athletes I know. But there would be many that would present a pretty good challenge (see the story from Slate below). And like Mr. Davidson above, most, I hope, would have the good grace to not make fun of someone less fortunate, like Mr. Obama. We know that worth is not measured in bowling scores or any other perceived ability, but in the content of our character, to quote MLK, or to paraphrase the Special Olympics oath, the bravery in attempting the win.

Is Barack Obama Good Enough To Bowl at the Special Olympics?

Another case of state school abuse

2009-03-11T18:37:00.002-05:00

This time from Texas:

From the Houston Chronicle:
"Football star Michael Vick got 23 months for arranging dogfights.

What should the punishment be for staffers at the Corpus Christi State School if they are found guilty of entertaining themselves by arranging unwilling fights between severely mentally disabled residents?" (read more)

http://www.chron.com/disp/story.mpl/metropolitan/6304217.html
One of the most telling quotes:

"The U.S. Department of Justice recently declared the treatment of residents in Texas state schools to be so bad as to be unconstitutional. Last year the system itself confirmed 570 cases of abuse and neglect among the 13 schools, amounting to well more than one incident for every 10 residents.

This and the latest scandal are symptoms of a sick system. And, as usual, one of the problems is money.

We’re told that none of the apparent perpetrators of the Corpus Christi gladiator shows was a supervisor. That probably means all were “mental retardation assistants,” staffers who deal directly with residents around the clock.

Beginners in that position are paid $1,711 a month. If you work hard and stay at it, you can work yourself all the way up to $1,970.

In other words, many are eligible for food stamps."

Words fail.

"Watch me send him into a seizure" -- time to close Missouri State Schools for the Severely Handicapped

2009-02-05T18:35:00.009-06:00

There are times when I nod my head and agree with those who would tell me separate is equal -- when I think that the needs of our children with severe disabilities are too great, when I know that I could work all day and still only make their school experience marginally meaningful to them, when I think about conductive education and Heartspring, that nice shiny expensive private school that S. tried to go to, and think that I understand. When I see my kids at the back of the classroom in the name of "inclusion" and I think about how hard it is to make anything work in a public school.

Then I remember things like this:
Mapaville Case Video

Missouri has State Schools for the Severely Handicapped. We have 35 schools and an enrollment of about 1000. I won't think about what those resources could do if given to our regular schools to make education work for our students with severe disabilities. Okay, yes, I will. And I will be angry about it.

There is nothing inherently wrong about state schools other than they are inherently wrong -- they are closed segregated systems. Closed segregated systems lend themselves to abuse. In a culture where 60%-90% of our population with severe disabilities are abused, a closed system is automatically suspect. What this case is showing us is that those suspicions were correct.

I was upset when I saw what I believed to be a staff member being inappropriately harsh to one of my kids with a developmental disability a week ago at school. But you know what? It says something that I was able to voice what I thought, consult with others, and keep an eye on the situation. If this kid lived in a place in Missouri where they could force him to go to a State School, just a few miles here or there, that same treatment would have never been witnessed by anyone outside of the situation.

What overwhelmingly seems to have happened is that local districts refuse to meet the needs of children they can dump in a state school. A friend was physically blocked from enrolling her child in a local kindergarten because the school believed a state school was more appropriate. This friend drove me by the local state school and asked, "What do you see?" And I couldn't answer. She asked, "Do you see any playground equipment?" And I realized that nothing about the school suggested a school - there was nothing in the windows, no playgrounds, no life. It's where districts send kids to forget about them.

My friend has homeschooled her child, who would have benefited immensely from being in a regular school and having friends her age. Still, at least she's not one of the neglected and ridiculed kids at the Mapaville School. Is this 2009? I understand hard choices, but this is ridiculous. We force kids into these places. I'd always advocated parents having a choice, but I didn't know that forcing kids to go to segregating schooling still happened.

The rationale behind sending kids state schools against their parents' wishes, at least according to this judgment, A.W. vs. Northeast R-1, that by letting A.W., a kid with Down Syndrome, stay at his local district, presumably with his siblings, if he has any, with the kids in his neighborhood, etc., the parents are selfishly depriving funding to state school that all the other handicapped kids could benefit from. How DARE them want what's best for their kid? That's not a privilege given to them because by virtue of their child's disability, that child must do what is best for disabled children, not what's best for him. What happened to No Child Left Behind and the ability of parents to pull their kids from consistently underachieving schools? (To be fair, the A.W. case was in the 80s, but my friend's case was in this decade. And if failure to even FEED a kid isn't underperforming, I don't know what is) It makes fights about who spends how many minutes in the resource room or the class room seem so silly.

The schools exist to provide a specialized education for kids who can't get their needs met in a regular setting. The above case, A.W. vs Northwest R-1, and the case of Chandler Scott in Mapaville, shown in the above video, illustrates that they have failed in at least some cases. So the schools exist to meet needs. But they fail to meet needs. But children must go there to continue the funding for their existence. And why do they exist? To meet needs... *repeat*

To hear the quips of people on the tapes, at first, I think that they could be me on a bad day. I understand frustration in this field and I hate to criticize, knowing that I can say things that I'm not proud of. Underpaid, undertrained, undersupervised... I've been there. It's so easy to blame the people at the bottom of the power structure. But then I hear this tape, 5 solid minutes of people gossiping, yelling at kids, and putting together a puzzle. Not a puzzle with the kids, but a puzzle. And I hear Chandler Scott's nurse try to induce a seizure in him for fun and I think, hell no. That's not me, not even on my worst day. That's not a human being.

I'm done equivocating. I live in Missouri now. These are my kids. That could be J., or any other kid I love in those tapes, getting yelled at. Heck, it was P., the kid I work with now who is in his first year of public school after years of state schools. I want these schools closed. I want the money that pays for the staff and upkeep of 35 building for 1000 students to be given to our local districts to help us fund quality -- not just adequate -- education for our kids.

Missouri State Schools for the Severely Handicapped

Parents pull their children from Mapaville School

Attorney for parents calls hearing process 'tainted'

Mapaville school controversy ends up in federal court

The Enbrel Diaries, Part I

2009-01-30T20:55:00.003-06:00

For the second Thursday in a row, I sat last night with a piece of plastic roughly the diameter of a large ball point pen pressed against my thigh. I had goose bumps. I was shaking and sick to my stomach and in fear that my Enbrel had sat out at room temperature for over 30 minutes and now, according to the nurse, "we can't assure stability" of the medicine. Every second was contributing to a break down of the thousands of dollars worth of mouse proteins in the auto-injector.

"Pull the trigger" I kept thinking, a line from a Queensryche song. Since the main character of their two concept albums was a junkie, I have plenty of injection references in songs that run through my head. "Don't ever trust...don't ever trust the needle" was the refrain that used to go through my head when learning to inject methotrexate.

I tried deep breathing. I tried yoga. I felt the muscle freeze, the same freeze that I've known so well all of my life. I remember it from junior high when we went repelling off an 8foot wall for P.E. I couldn't let go of the rail. I remember it from summers standing at the side of the pool, unable to jump. I fought it hard during my two years of martial arts in college. I remember it from AmeriCorps, from being perched on some rock or cliff at an impossible angle and Brian or Pam saying, "just jump."

When I was sixteen, I started what would be a life of getting poked by needles, but then it was always someone else doing it, not me. At 100 lbs, there was no place to put most of the needles except in the rear, so I would stand there, leaning on one leg, weight off the leg that was connected to the side the nurse approached, and leaning on thin, damaged wrists. I would close my eyes and repeat song lyrics -- anything rhythmic, anything to keep me from jumping and tensing the muscle. My favorite was Queen's Bohemian Rhapsody "I see a little silhouette-o of a man...." The cortisone shots always burned so badly, I could feel the medicine spreading out like a web from the shot. The gold shots just hurt -- the needle was so big in diameter that I could see through it. And I was so small. But in 1995, I switched from my gold and plaqunil to oral methotrexate. The weekly visits to the student health clinic on campus where I got stuck and peed in a cup on Mondays and then returned to get my shot on Tuesdays were over. Just the methotrexate liver panels now.

I always just looked away and squirmed at the weekly, then finally monthly, then quarterly blood tests. After about 10 years, my veins had enough and liked to roll and hide while flustered technicians chased them by wiggling the needle. I soon learned to drink gallons of Gatorade before a blood test, which provided ample hydration for any urine tests too -- sometimes I was so hydrated, I feared the shock of the needle would make me give my urine sample a bit too soon.

I remembered that feeling as I sat there, on my toilet with the lid down, auto-inject or whatever they call their trademarked pen pressed into my goosebumped flesh. Was the paper thin insulin needle that I use to inject methotrexate this hard to learn? It's been two years since I got tired of puking all over two continents and switched to indictable methotrexate -- rat poison that will eat my skin if I don't inject it deep enough. I now have plenty of padding and choose to use my stomach flab as a cushion in a bizarre tribute to my Aunt Donna, who I used to watch inject herself with insulin in her stomach. I remember now holding that needle inches above my skin, thinking "1 -2- 3 NOW" and not moving, or pounding my skin twice or three times with a fist before giving the shot, like I'd learned to do by watching the vets inject my horses.

But Enbrel burns. I have to hold the pen there and not move for 15 seconds as it burns my leg. I know this. My fear last week was that I would jump and mess up thousands of dollars worth of medicine. I squealed as the medicine went in last week, but also with triumph knowing that I was doing it, I was causing this damage to myself and tolerating it. This week, however, the fear was just the act, the pressing of the plunger, the 15 seconds of pain and burring, the paralysis of my muscles that would not press a button.

I'm reminded of being perched on a cliff in Point Reyes, overbalanced, unable to move back and correct myself, unwilling to shift my weight forward for a foothold that might not be there. Pam, Brian and I went out to see a whale. It was the last week of my last year of what I now consider a separate life. Between one life -- a life where I ran races, clamoured over cliffs to see whales, built trails, believing my rheumatoid was simply a matter of will -- and another, which I couldn't see and couldn't know for sure the safety of the footholds, if the hands would grip the rock or if an ankle would turn and send me into the ocean -- I was paralyzed.

I think of that whale, that rock, as I sat there. "I see a little silhouette-a of a man..." I thought.

And sometime later, I pushed on the plunger. The Enbrel stung worse than last time but not as bad as I had imagined. Then the auto inject popped again and it was over.

Until next Thursday.

Narrative medicine

2009-01-04T21:31:00.003-06:00

I'm finding out that narrative medicine has been talked about before, by smarter people than me.

From the New England Journal of Medicine: http://content.nejm.org/cgi/content/extract/350/9/862

No, I can't read the full text either.

By the same author: http://litsite.alaska.edu/healing/medicine.html

BMJ : http://www.bmj.com/cgi/content/full/313/7064/1062 Information Needs of Doctors, dealing more with clinical info, not patient info.

Someone else has addressed the fact that medicine for the chronically ill, and even for the acutely ill, is a process of gathering the information, making a story out of what is messy and not easy to follow.

We need the book-jacket summary for quick office visits, the War-and-Peace volume for really understanding, for instance, if my little sister has MS or something else, or if I should give up methotrexate to one day be able to have a child. These are not simply clinical questions. These have layers and threads. Did the concussion my little sister have affect her balance? Is her dizziness possibly a result of failed Lasik surgery?

I'm going to work on some sort of organizer for her.

maybe

I need something.... a missing product in the patient organizer market

2009-01-04T01:47:00.002-06:00

Between me getting to know a new rheumatologist, my grandmother's medical hell, my little sister's struggle with suspected MS, and now my father-in-law's diagnosis of terminal cancer, I'm finding that many people in my life are facing many new doctors. And most of us don't have a doctor like House who will become intellectually challenged by our various symptoms and try to pull them all together. What we have is a scattered medical history and the 15 minutes of face time with a flustered doctor.

I've written about pulling my health records into one place. But my doctors are not going to read hundreds of pages. I know this. And, god bless Dr. S., but I just paid $50 for my records and can't read a damn word. I miss my old fashioned rheumatologist who used to dictate and type everything.

What we need is a way to compile a narrative -- a quick 1-2 page summary of what's going on that a doctor can skim over. That admittance paperwork at the dr's office (you know, the "check if you've ever had a cold" type thing) is supposed to accomplish that, but we usually fill out as quickly as we can so that we don't hold up the appointment.

When I met my new rheumatologist, I typed out 2 pages for him -- a quick summary of medications, medical conditions, and what my treatment goals/questions were for him. He skimmed it and gave it back to me. (Have I mentioned that I'm giving him one more shot before I seek out my old rheumatologist's office in Kc? Yeah. )

For my grandmother, who has a history of all sorts of strange fainting spells that are getting increasingly worse, and my sister, who has a variety of vague auto-immune symptoms, sorting through the important info and the non-important info is a huge job. My father-in-law is also having the same struggles with his doctors -- his cancer goes back to 2001. But his joint pain symptoms are new and possibly unrelated.

It's also difficult to quantify what exactly the doctor has said -- even people in the same room hear different things. That makes it impossible to carry that info to another doctor. In a hospital, it's hell -- every new person coming by the room says something different and we don't remember who or what.

There are patient journals that carry this sort of generic info for kids -- major hospitalizations, immunizations, etc. I've seen diabetes and wellness journals that track day-to-day mood and food. I'm going to try to work on a hospital/treatment book that keeps a running narrative for the patient and attempts to provide some cohesion. Watch this space.

The bestest computer program for sick people

2008-12-20T00:04:00.003-06:00

I promise I do more than review products. But I'm always so fascinated by the fact that a simple difference in design can make such a huge impact on the user. That's why I love AT, I think.

Today, as I enjoyed my snow day, I decided to do something about that pile of medical info in my bottom drawer. I've written before on how I'm compiling my records on Medicalert and for someone with a complicated health history, that's a godsend.

But what about all those pharmacy receipts and insurance documents? I nearly have a breakdown every year trying to figure it all out. Should I go for the HSA insurance? Should I take the board paid insurance through my school? Should I get on my husband's plan? How much do I contribute to my FSA? Urgh. Before, I was so grateful to have any insurance, even the crappy insurance I had to pay hundreds a month for myself, that I didn't care. But I also have credit card bills that will one day kill me -- not all of my credit card debt is medical, but I imagine about 50% is. That was the price of that crappy insurance.

Now I have options. Not great ones mind you, and they are all dependent on me staying healthy enough to work full-time and hubby working as well, but still -- they are options. And it's nice. I've been covered by three different insurances this year -- for a month, I was covered by all three simultaneously.

I just spent about three hours filing all my EOBS and pharmacy receipts for this year. I still have no idea how to figure out what I paid with my FSA. As I was sitting there, not knowing whether to file by date, by payment method, by provider or what, I thought "This is what databases are meant for."

I started to create an excel spreadsheet and decided to look to see if anyone else had done anything similar. I found Quicken Medical Expense Manager. It's so beautiful, I want to cry. It's just a relief. It was expensive, but man.... I can look things up by what I had done, how much it was, if I paid by FSA, if my insurance paid, or other. I can't tell you how frustrating it was last year to almost get to my out of pocket max but not to be absolutely sure. Or when the Xray from 6 months ago pops out of nowhere, begging to be paid. I'll think I paid it, but I won't know.

This is a good system. Beats the hell out of the piles and notebooks that I break out during tax season. For $50, it's so worth it already.

I've often thought that the business of being sick gets in the way of getting well.

If someone buys me a receipt scanner for Christmas or a scanner with a document feeder, my life will just freaking rock.

A few more of my favorite things...

2008-12-16T14:12:00.003-06:00

Kitchen stuff for people with bad hands -- now with ratings

Lids off Jar Opener

Rating - 8 /10
I bought one for my grandma a few years ago and then got a hold of this one at a garage sale. I've given it to my father-in-law (well, it's in the trunk to give to him) and I miss it.

Unfortunately, it takes up a lot of counter space. And it does not fit the one thing I consistently can't open -- the tank on my cats' automatic waterer. Still, handy. I haven't convinced hubby it's worth the counter space but he's never been in the house himself without being able to open anything.

Rechargable Can Opener
6 out of 10
I can't work a manual can opener without a measure of pain involved. Come to think of it, crying over a can of green beans while the boy I was supposed to be watching tore through the house was a main frustration of my job a few years ago. It was her house so I used her tools. I should have brought this over with me.

Unlike those under-counter models I grew up with, this one doesn't make me have to lift or support anything. My friend M. who has use of one hand, uses this too.

I struggle to get it to clamp down right on the lid though. When it works, it's great, but when I can't get it to attach right, it's frustrating.

My mother and stepfather-in-law just bought me the one touch can opener.
We'll see what happens. Apparently there's a One Touch Jar Opener too, but it's flimsy compared to my (I mean now my father-in-law's) Black and Decker.

I don't have a lot of cool kitchen stuff, and since my hands have been hurting lately, now might be the time to investigate options. What do you get someone who hates to cook and has achy hands? I can tell you what doesn't work for me:

1) those lovely pampered chef stoneware things.
Too heavy. I can't lift them.

We have a set of really nice Cephelon pots and pans that hubby and I bought after the wedding with our Bed Bath and Beyond certificates. Same principal. Too heavy -- not necessarily too heavy to cook with, unless I'm doing something that needs to be lifted -- but too heavy to wash Not a good idea. I've often thought about secretly buying a saucepan and frying pan at Walmart.

2) the pampered chef chopper
wanted it to work really badly but the force required to hit the thing was not good.

To be continued....

These are a few of my favorite things....

2008-12-09T19:42:00.003-06:00

It's the holiday season. In case you're wondering what to get your favorite arthritic narcoleptic, I have TONS of ideas, but most of them start with a "c" and end in "-ash!" But I spend time test-driving products here and there that make my life easier and I thought I'd compile them for the arthritic narcoleptic in your life. (And if you have an arthritic narcoleptic in your life that isn't me, let me know. We'll form a club.)

I've tried to keep the focus of this list disability-related:

For the first installment, I bring you a discussion of shoes. Considering the tears shed at my little sister's wedding over my footwear limitations, (her tears from aggravation, mine because I FREAKING HURT!) shoes are sensitive right now, literally and figuratively. I went through a phase where I could only wear my Tevas -- that's no joke in November. Here are a few options for those of you shopping for limping family members.

I currently own three pair of shoes that I can stand to spend a day in -- 1 pair of Asics tennis shoes, one pair of Easy Spirits that pass as black dress shoes, and one pair of brown speedo aqua shoes that I wear with kakis and try to pass as brown dress shoes. (I know how tacky it is, but pain is also tacky!) All are pretty worn out and gnarly, btw. Here are the best shoes I've found for my arthritic feet. I'm sure there are better shoes out there, but I'm also broke.

Rykas

My tennis shoes years ended a long time ago, I thought, in college when my toes began to drift inwards. Silly me. It was just my BAD tennis shoes years that have ended. I hobbled around college in cheap men's tennis shoes after wearing out my second pair of Docs. In AmeriCorps, I discovered Rykas. They accommodated my ever-drifting toes and flattening arches because they are made for women -- not just trimmed down men's running shoes. Women tend to have much smaller heels, so Rykas have smaller heels and wider toe boxes. I wore out several pair in my AmeriCorps/running/marathon phase.

I'm torn between being nostalgic and wondering what kind of crazy girl I was to run a marathon. No wonder I'm trying to save my feet! I foolishly did not have orthodics then, so I can't attest to how they do with orthodics at all. (Ran a marathon, no orthodics. Dear god, what was wrong with me?)

Asics Duomax: Ooohhh.... I just did a search to see if I could steal a photo and guess what?! They still sell these!! yayayaya. Amazon has them for $50. I paid $120 for mine 2 years ago at my little sister's chiropractor's. He does all sorts of gait analysis for runners and stuff and I'd been hobbling around on my orthodics for a few years and thought he could give me some advice. Mine look like heck and I'm afraid it's to the point where I can't even wear them anywhere but to mow the yard. But they hold my feet in nicely and keep me from turning my ankles. I've added some dorky cord locks and smaller laces. These shoes have served me nicely, aside from a phase where that alien bump on the top of my foot was swollen and supersensitive (and yes, there is a medical term for alien bump but I forgot it. )

Here are my Easy Spirit shoes that pass as my dress shoes. Mine have a little bit of red trim and are the "Pathmaker" style instead of whatever these are, but really, same thing. They won't win me any fashion awards and it sometimes hurts to have to fight the old ladies for the shoes, but they are black, stretchy, and accommodate orthodics. Because I have worn mine to work about 4 out of every 5 days this year, mine are starting to look shabby. They aren't built to last, but I guess lasting a year of heavy use is good enough for $50 shoes.

My Sam's Club $20 brown speedos have absolutely NO serial numbers on them so I can't tell what kind they are. They have been wonderful though -- brown nylon, breathable, with fake laces and they look like a all-terrain type shoe. When I first got them, the elastic was too strong and I struggled to slip them over my heel. If you go to Sam's Club this season and see these, I'll take a 9 in brown and black. Thanks.

Those of you who knew me when might wonder about the Doc Martins I used to love and live in. They were great for when I was first sick -- light but with a little support. More importantly, I thought they were Cool As All Get Out (tm). (I mean, come on! Whip in the Livecrime video had the exact same pair! And yes, that was yet another Queensryche reference.) I wore out two pair in college and had another in Ireland. That's where the alien bump appeared, a perfect friction mark between my feet and where the laces are tightened most on the boot. Oops. I was shown how my very unsteady gate makes Docs a Bad Thing (tm) for me because of how quickly I can wear down the underside, making them very uneven. So except for special occasions (you know, like my wedding, where I wore white Docs) Docs are a thing of my past, like my motorcycle jacket and embarrassing love for hair metal (oh...wait.... but Queensryche transcends hair metal).

Other shoes that work for me:
Tevas! I've had two pair of Teva Pretty Rugged and I have a permanent Teva tan --something I was very proud of in my days on the beach in San Diego. They are the only shoes I can wear when the alien bump swells and because they are velcro, I can adjust them to whatever size my feet happen to be. However, unless they are in really good condition, it's hard to dress them up at all, even in Fayetteville where I tried for hippie teacher and tried to wear them under long dresses. Also, the rubber is pretty susceptible to my bizarre wear patterns and without orthodics, they can be inward slanting quickly. I've had the velcro give out on me when walking down hills -- helllllo face plant. Still, these are shoes worth investigating if you happen to live with an alien bump on your foot.

Beware. Tevas will stink and there is NOTHING you can do about it.

I've worn crocs on and off with varying success. My main objection is they look dumb. I wear them alot and I know they look dumb. And I realize this is someone who wore knee-high suede elf boots for years in high school and was married in Doc Martins. But I still think they look dumb. Still, they are tolerable when alien bump doesn't scream at me. With socks on (and I know that's double dumb) I can wear them on days I can't wear other shoes.

I'm currently investigating Drew Shoes. They are made to accommodate orthodics and all shoes are made on similar lasts, so you can order by last once you find a shoe that fits.... which for me, is, of course, the problem.

I'm not a fashion queen, by any stretch of the word, but I'm starting to realize how much my scuffed up sad excuse for footwear undercuts any professional image I'm trying to create.

Still, I think of M. and how she only has one pair of shoes that will fit over her AFOs. Like me, her shoes wear out and get dirty pretty quickly. (I think scuffed up shoes is less a lack of attention, like my sister claims, and more of a symptom of mild mobility impairment -- we're always scuffling and tripping and scraping in ways that most people don't. )So she's stuck wearing dirty tennis shoes to church and to her job. If I end up liking my Drew's, I should send a catalog her way.

I've tried Merrils -- I have a pair of hiking boots from when I could hike, but mostly they are too narrow. I've tried Birkenstocks and all of those brands at the various outdoor stores that are supposed to be flexible and breathable and all that. But with the exceptions of the ones listed here, I just flat out can't find shoes that I can stand for more than an hour or two.

This is not the biggest problem in the world. This isn't even my biggest problem today. But for some reason, I felt compelled to share my shoe frustrations in hopes that there is someone out there that has an answer.

Besides the travelscoot, which would be my answer to a lot of this.

Covering my butt

2008-11-26T20:08:00.002-06:00

I've been in this field for a while. Since 2000, really, when I took a job as a youth counselor in a "rehabilitation program for adjudicated youth" -- i.e. kiddie jail. I fled from juvenile "justice" to working as a para because I thought it couldn't be nearly as hard. hahaha joke was on me! :)

I was a 1-on-1 para for J. with Angelman Syndrome
a summer preschool para for a boy with cerebral palsy and a girl with suspected Angelman Syndrome
and ABA implementer for a preschooler with autism

then, all through grad school:
waiver/ community support worker (full time and part time)
respite worker
conductive education aide
speech aide
private tutor

now speech implementer as I work toward my certification in special ed. And yes, I've done stupid things, silly things, unprofessional things as I grew up learning this job. But I always had the belief somewhere that if I acted in good faith, things would be okay. I wouldn't be a horror story in the courts somewhere. People would just know I intended well.

One of my students is in a little trouble and now it is becoming legal trouble, I'm afraid. I heard there might be a lawsuit and I was okay with that -- thinking of what I could do to support his family. Then I remembered that I would probably be the defendant, not the plaintiff. As I gathered evidence through my files, I kept thinking "Which one of my colleagues am I setting up for this?" I'd pass teachers in the hall that I had complained about in reference to this case and I felt guilty.

Not so guilty that I didn't go ahead and spill my guts to the student's advocate, giving them ammo to use against me if needed. But another colleague is also having legal trouble with a student and I support him. And I think, holy crap! This is what I've raised my hand for. This sort of life where I have to look over my shoulder all the time, where I have to play against kids, their parents, people I work with and respect.

Dude, I need to join my state teacher's association for the legal representation, like now.

I am a bit proud though I decided to NOT help anyone circle any wagons and instead work for the kid. Whether or not he knows it... or cares... I just have to tread carefully in this field.

Man. Special ed is a minefield. And we return to it everyday. I don't know why some times....

There but for the grace of god go I....

2008-10-30T21:52:00.003-05:00

or there will go I eventually....

Rheumatoid arthritis hand gallery.

I didn't mean this to be the all rheumatoid, all the time blog. I posted before that I had a Zac Browser but no Zacs. Now I have plenty of Zacks and Daniels and Lauras too... so much time that I don't know how to keep up enough to even form thoughts on them.

So I'll obsess about my slowly drifting hand and feet joints.

To statin or not to statin?

2008-10-28T21:14:00.003-05:00

So, I can't figure out why I'm so darn tired.
Then I remembered -- oh yeah -- I have rheumatoid and narcolepsy. That'll do it.

I'm also wondering about my statins. I've been on generic zocor since August. I'm understanding that it can break down muscle tissue. Great. That's just what I need.

However, I was really amazed at what I found out -- not just about the scariness of the muscle-eating side effects, but also about what statins can do. The fatigue DOES indicate I need a blood test to make sure proteins from my muscles aren't being carried into my kidneys. Lovely. But there are trade offs. For one, I have a lower chance of dying from heart disease. AND... as an added bonus, clinical trials hint at effectiveness against RA.

http://www.webmd.com/rheumatoid-arthritis/news/20060130/statins-curb-rheumatoid-arthritis

Any lowering of inflammation in my body is a good thing, me thinks.

There is an earlier 2004 study that shows the same results.

Good to know.

I'm still sore. And paranoid. Is my joint swelling or is that muscle tissue being eaten?

"I can feel it coming back again..."

2008-10-15T21:44:00.004-05:00

To quote a song from my college days... "I can feel it coming back again/like a rolling thunder chasing the wind//forces pulling from the center of the earth again." Live, Lightening Crashes.

Although my best friend Susan and I liked to sing that one at the top of our lungs are we piloted her sky-blue Omni through the streets of that tiny town we thought we owned, we never could figure out exactly what the lyrics were about. Something with birth and death and angels. But the refrain was so haunting that it didn't matter.

Now I'm walking around with those lyrics in my head. And a tiredness in my hands when I type or try to answer questions on a test. And a pain just below my kneecap. And a swelling in my right foot. I slept close to 40 of the last 72 hours.

Maybe it's nothing. Little to no sleep, standing in shoes that I knew were bad for me. But every since my remicaid was cut off, I wait for the flare to begin again. It's like I know it's there -- just waiting on me to let my guard down, to be happy at my job and at my life... the other shoe is always there. Except in this case, it's a high heeled one that was spectacularly stupid of me to wear.

Maybe I'm wrong and it's all a change of the weather.

I never used to be this scared of it before.

"We do not self-contain children"

2008-09-13T23:37:00.003-05:00

"We do not self-contain children" When I interviewed for my current job, I was told this. Firmly. I had mentioned that I wanted a self-contained room.

What I'm finding is that this school operates like my last middle school. There are no self-contained rooms. Just resource rooms.

In a resource room, all kids who need extra help are in a class together.

Think about this for a minute. With No Child Left Behind, the very lifeblood of the school is dependent on whether or not the kids with mild and high incidence disabilities pass a test. So you might have 8 kids in a resource math class. Five of them will have some sort of learning disability or mild intellectual disability. And you have to make them proficient in grade level math by the end of the year or all hell breaks loose. And then three of those kids have low-incidence disabilities -- non-verbal, severe multi-handicapped, etc. They are happy to sort color bears.

Who are you going to teach to?

I am convinced that the resource room is an evil when it's used this way for kids with severe disabilities. I'm making a schedule now and one of my kid is in this "resource room" for all of his classes except one academic class (which he is in another resource room with the same two kids he's spent all day with) and his art/p.e. etc for two periods. This is the worst of inclusion and self-containment all rolled up into one.

If it were a true self-contained class, then the teachers could tailor the instruction to the severely disabled kids instead of having to teach them as well as the kids with mild disabilities. If it were inclusion, the kids with severe disabilities could benefit from participating in the classroom environment. As it stands now, the resource room doesn't seem to do "my" kids any good.

It was like that in the first middle school I taught in and it's like that here.

And in my intro to special ed class, the instructor drew a diagram that presented the resource room as a less-restrictive option than any other on the list. It's the most restrictive and the least tailored to the needs of severely disabled kids.

*grumble*

Why are LABELS more important than what we are actually doing? If you are in a room all day with the two other kids in your grade level who have similar disabilities, you are self-contained, even if other kids come in and out all the time.

One day... I will take over the universe and end this crap.

As of now, I need to do a visual schedule for a kid who doesn't really change classes. At all.

**Note: said professor was put in his place by a blind student, who challenged his idea of "residential school" being the "place where you have to lock em up." She brought up that her local school was very restrictive because no one knew how to teach her and to be in an environment where everyone knew how Braille was liberating.

And this is not to do/say anything against the brilliant resource teachers I've seen at work. It's a system that sets kids with low-incidence disabilities up for failure. And their teachers. And their peers.

In re: Tropic Thunder

2008-08-25T21:58:00.004-05:00

Watch this ad and Pledge to never use the r-word to demean other human beings.

I've spilled a lot of virtual ink regarding Tropical Thunder. So, to quote the character that the movie supposedly mocks, "That's all I have to say about that."

At least for now.

Gathering the bread crumbs

2008-07-26T00:54:00.004-05:00

For a while now, I've wanted to gather all of medical info in one place so I can review it and hand it off to my new rheumatologist.

I obsessed. I looked at Google Health, Microsoft Health Vault, EMRy stick. Through Google Health, I learned of MediConnect Global and My Medical Records.com, all of which seemed like good ideas, until I learned the fees that MediConnect Global charged and I saw Asa Hutchinson, Homeland Security on the board of directors of MyMedicalRecords.com. I'm not entirely sure that my SED rate is a matter of national security, but I don't trust Homeland Security or any agency that would wiretap Americans.

I'd had Wal-greens health info card service for a while, but the web interface was frustrating as heck and I actually never got my card.

What about Web MD? Did I really want to enter all of this info MYSELF?

So I fretted.

Did I want a service? Did I want records that anyone could access anywhere? Did I want to carry them with me on a USB key?

Google Health was both too limited because I couldn't add my own scanned documents, and too scary, because, well, it was Google. I love them, but I already get creeped out when I send an email about a personal topic and am suddenly bombarded with ads. I have no expectation of privacy on the net and I don't usually let that bother me too much, but there seemed to be a line I didn't want to cross there.

Ditto for Microsoft Health Vault. Dude, they can't get my Windows Mobile 5 phone to talk to my Vista computer and they make both operating systems. I don't quite trust them to have it together.

And I don't know if having my health records out there bothers me more because it's SUPPOSED to bother me or if I really do mistrust the big boys of the health business to do right by me.

I looked into getting an efax number and gathering my records myself on a continual basis. It seemed like a gigantic hassle. I looked into having MediConnect global do it for me, but it seemed too expensive (looking back, it would have been about the same. )

I decided to go with MedicAlert Gold. I have a fax line and a voice mail line for $10 a month, what it would have cost to have a fax number through efax or something like that.

I store all my medical records online and when I'm not so poor, I'll buy the software to sync it with a USB key. I'll have the ID card someone can call to reach an operator if needed and the USB key I can give to a doctor and say "here you go."

Still, it's a giant pain in the you know what, gathering up records from the last 32 years. Most places charge $15 - $20 for just the idea and then around 50 cents a page for copying. I just got a bill for $50 from my last rheumatologist for his 5 years of service. Ugh. This project will cost me a few hundred dollars when it's over. Should have just let Mediconnect deal with it.

Is it worth it?

Well, in copying pages of lab reports, I noticed something. My total cholesterol was high in 1995. I was 19. 120 pounds. It later shoots up in 1999, when I was in AmeriCorps, running marathons, building trails, in the best shape of my freaking life.

Not a soul mentioned it to me. I have gone 10 years with cholesterol levels that have gone between normal and in the 240s, where my cholesterol was last winter when everyone freaked and wanted to put me on statins. I am going back and looking at office visits to see if there is a correlation between my high cholesterol and what drugs I'm on.

This is HUGE. I'm struggling so hard with this South Beach Diet, especially sitting in the nursing home and hospital with my uncle and visiting my Arkansas family. They don't make salads that are as good as hamburgers when you're stressed and sad. And when my cousin Karen makes a pie, there is no diet in the world worth missing it for.

This lets me know that my cholesterol levels may have way more to do with my medicine than with my diet. This isn't permission to eat more McDonalds, but it is a chance to say "Okay, I haven't failed. I'm not killing myself with lack of willpower."

It also lets me know that if I can find the correlation, I can stop it instead of adding statins or niacin.

That one little find there might be worth gold as far as having info I need about my health.

Then there is something else in that file -- my letter to voc rehab. I was on a full scholarship in college and did NOT want any voc rehab support. My counselor convinced me to apply and have a case open. My doctor wrote a letter saying I was great now, but I would continue to struggle for the rest of my life and he could not predict anything, but I would most likely need some sort of accommodations in employment for the rest of my life.

Since last April, I have kicked around applying for disability, especially when it became apparent that working full-time was a struggle. That letter might be worth a different kind of gold.

What all of this did is remind me of how far I've come.

I have been having GI issues and over the last week, I was home, so I went to my family doctor. He knew me from the moment I was born. Not many people in their 30s can go to the doctor that delivered them.

I remember sitting outside his office one day, holding my file because I needed to do lab work, flipping through it and seeing my six-week-old check up. I was a little anemic, but overall, fine, it said. I was a college student and bowled over that this file literally had my medical life in this file folder.

My doctor is retiring soon. I'll never get this again, being able to walk into an office after six years away, and remind him about my ulcer treatment in high school and him being able to do the rest of the math and return with a handful of nexium samples and the number of a doctor in my new town to see in 10 days. It was comfortable, like seeing an old friend.

Gathering up all these bread crumbs from all over the country is maybe my way of trying to recreate that. No one will keep the file on me. After so many years, it's destroyed. There isn't anyone to gather a whole file of my life any more. No one is that interested. My new rheumatologist only wanted records from the last few years.

I don't know why it's important that I hold on to these. But it is. It just is.

My uncle

2008-07-25T21:57:00.001-05:00

My great uncle Ben passed away yesterday. Ben was 90 years old.

Ben had an unspecified developmental disability and / or a severe articulation disorder. He was born 90 years ago where disability wasn’t something talked about. I’m sure there were institutions ready and willing to take him, but instead he was cared for all of his life by his parents, brothers and sisters, and later on, his many nieces and nephews. Most importantly, I think, during the last 20 years of his life, he cared for himself, in his own apartment, until he was no longer able.

I spent today in a Kathie Snow presentation where she talked about building natural supports for people with disabilities. Ben lived most of his life with natural and generic supports, using services only as he got older. Ben had Meals on Wheels and the community’s subsidized housing. He later had a private duty nurse come check on him and his living was always earned through his social security checks, especially as he got older and could no longer make money mowing the lawn and doing odd jobs for people. Ben supposedly lived in the “dark ages” for people with disabilities, but he got along fine, even better, I think, than some of the people I care about who are completely entangled in the disability service delivery model.

Ben had several advantages that most people with disabilities don’t have. First of all, he was one of 11 children. That sort of large farm family practically guaranteed an abundant supply of housing and care options as his parents got older and passed away. By the time I was born, in the mid 70s, a few of his sisters and brothers and their spouses had passed away, but most were still in the small town, or had come back to the town.

That didn’t mean that the abundance of nieces and nephews were there, however. Most had left the town for good by the time I came around. As Ben’s siblings and their spouses got older, the care fell to the remaining nieces and nephews, with more and more reliance on supports.

“Community” is such a buzzword in the field of disability professionals. I can’t count how many times I’ve heard that word in reference to a child or adult who is, for all intents and purposes, institutionalized in the community. A bowling program and weekly trips out with other disabled adults isn’t living in the community. That community, however, is disappearing quickly for all of us, disabled or not.

Ben, however, lived in the community. He lived on the family farm most of his life, first with his parents, then with his sister, and then with my grandparents. When my grandparents moved away, he lived with us for a year. Then in his 60s, he wasn’t really happy in a home with three young loud children, so my mother found him an apartment in town.

He knew how to make himself a simple breakfast and supper and he had his meals delivered for lunch. My mom would pick up his laundry once a week and she or a cousin would clean his house. He learned how to work a VCR and eventually, cable and satellite TV with a special remote. He loved his tape player and his John Wayne movies. He learned to use a telephone with pictures of people on the speed dial buttons. He walked down to the post office every day for his mail, and more often than not, to the town’s restaurant for his supper. He could walk to visit many of his sisters and brothers who lived in town and most of the older people in town knew him. “How’s Benny?” they would ask. It seemed strange to me that to them, he was “Benny” – like a child, when he had always been an adult in my life.

When I got my first job in this field, working with a child with Angelman Syndrome who used gestures and vocalizations to communicate, they asked if I’d had any experience with disability. I said no. It wasn’t until years later that I thought of Ben. He wasn’t “experience” though. He was my uncle.

My grandparents and Uncle Ben lived next door to me until I was 8. Ben was a constant presence in my childhood, always quietly in the background of a family event. It seems to me that he came and went when he wanted to, preferring long walks on the farm, mowing the lawn or tinkering with the lawn mower, or being with his horse, Trigger, to the aftermath of a Sunday dinner, which inevitably meant some sort of loud squabble between my sisters and me.

Upstairs in the farmhouse was our own playhouse, except for Ben’s room. We were to respect Ben’s room and not run in and out of it. He had a T.V. in his room, which was something amazing in the 70s when T.V.s were mostly in large wooden consoles. On the shelves of his room sat his collectables – horses, mostly, ceramic and metal and plastic. There were also birdhouses made from craft sticks that my cousins, sisters, and I would make. On the walls were long paper scenes from colorforms – a toy where children would rub a print of a cartoon cartoon character onto a piece of a paper. I remember making a Scooby-Doo colorform for him and a pink-sunseted Bugs Bunny space scene. I don’t know if he did the remaining scenes or if they too were gifts from his great nieces and nephews.

What I loved most about visiting Ben’s room was his keychain collection – truly a wonder to behold. Ben had keychains from all over the U.S. He had cheap bank and Missouri Farmer’s Association keychains. He had fancy puzzle ones, like the little plastic ships in primary colors that would come apart. He had a few in the shape of tires and of bottle caps. He had large gaudy inspirational keychains. As an adult, I would gather keychains for Ben at every place I traveled to, becoming sad in later years when I knew that there was no place for this collection in his nursing home.

What do you do with all these keychains now? Individually, they have no value. There’s not a hidden gem in there that Antiques Roadshow will surprise us with. Much like his horses, or my aunt’s dolls, or any collectable, their value was that they were his, that they represented small acts of kindness made on his behalf by great nieces and nephews all over the country. And yes, they represent guilt. I know that more than once, in some airport, I would pass a keychain rack and feel a stab of regret for not visiting my uncle more. How was Ben? How long had it been? My last time in town I wanted to go see him, but, well, it can be awkward just stopping by like that. I didn’t have the time. The least I could do was pick up a keychain to let him know I hadn’t forgotten.

That happened too often. Ben loved babies and he was especially proud of his great-great nephew Benjamin. As I said before, we grew up with Ben in the background and thought nothing of it. But at a certain age, the awkwardness sets in. I began to worry about what would happen if Ben was talking to me and I couldn’t understand him. How would I know what to do? I wanted to clean his house only when my little sister was with me so that she could take him to the grocery store at the same time. (To be fair, though, that had less to do with awkwardness and more to do with trying to keep him off the wet kitchen floor in his slick cowboy boots). I wanted to see Ben, but only if someone was with me to help.

I try not to be hard on myself for that, remembering the tons of nieces and nephews who never stopped by at all. Still, I hope he forgives me for that.

Thankfully, I got over that phase and I think it was because of the work I did. I’d had experience with all sorts of people who communicated in all sorts of ways and it helped me stop feeling like Ben was an uncomfortable obligation and instead helped me sit back and enjoy Ben again. I loved it when I was mopping his floor and he sat in his favorite leather chair and sang “Home on the Range” to himself, rocking and thumping the leather with his fingers. That was his happy song.

In the last few years, Ben didn’t sing many happy songs. It started with falls, a few here, a few there. Mom had to take away his beloved cowboy boots and give him tennis shoes. We tried a life alert system. He had over 100 calls one month. By this time, the brothers and sisters were almost all gone and the nieces and nephews were spread even more thin – most the younger ones having flown and my mom’s generation caring for them as well as their own parents.

He began to have complications from his diabetes. My little sister would take him shopping and have to haggle him into diet coke and sugar-free ice cream when what he wanted was a real Coke and a Klondike Bar. We replaced most of the meals he made himself with meals from the restaurant in town. That worked for a while, but the headaches and dizziness began to plague him. I don’t think his headaches ever went away.

After the last, bad fall a few years ago, Ben went to a nursing home. We knew, as he did, that it was the beginning of the end. There he became “a behavior problem” in a way he’d never allowed himself to be, getting upset and agitated, not keeping his clothes on, yelling “hey” and clapping his hands together in frustration.

Worse, though, was when he was calm, sitting with his head on the table and not moving.

We brought his beloved John Wayne tapes and he stubbornly turned away from the TV. We brought his stereo; he turned it off. I decorated his window with Christmas lights, remembering all the times I decorated his apartment for Christmas as a child, but he wouldn’t appear to know the difference. Even his dancing Rudolph the Reindeer didn’t cause a stir.

Ben, at his late 80s, mourned the loss of his independence so fiercely that it was hard to bring him out of it. Still, there were a few moments where I could see the old Ben, especially when my grandmother and aunt were also at the same nursing home and teased him.

This isn’t all of Ben’s story – there are pages and pages to tell. But there aren’t very many left to tell it. I think of his last few years and how he was a shadow of himself there. But his life is not a sad story. Everyone of those 90 years could have very easily been spent in a place very much like the nursing home, a place he hated with all his heart. In 1928, I’m sure that was an option to his parents, perhaps the only option anyone thought they had.

Before the age of supports or inclusion, Ben had all of that. Before the IDEA, he went to the 1-room school house with his brothers and sisters. He had a long, happy life surrounded by friends and family. He leaves behind acres and acres of lawns mowed and hay rakes and baled, miles paced all over the farm on foot and by horse, and later in a worn path across his apartment carpet. He’s saved barn kittens from Tom cats and retrieved lost toys tossed over the side of the bridge into the creek. He was the recipient of thousands of coloring book, craft sticks, color-form and misc craft projects, which he always displayed with pride. He herded cows and preschoolers out of trouble.

In short, he was a valued and loved member of the family and the community. He will be missed.

Visual schedules and tasks lists

2008-07-12T17:43:00.009-05:00

When we say a student is having trouble with transitions, the first thing asked is "Have you tried a visual schedule?" We often use the phrase "visual schedule" to refer to true visual schedules, and also to task lists, which are sort of mini-schedules. One lets the student know the actual physical setting and the other lets the student know what is expected in that setting. One communicates "where am I supposed to be?" and the other communicates "what am I supposed to do?" Yet we use them interchangeably. No wonder students get confused.

I ran up against this at my last job when trying to make a schedule for a second-grader who was new to the school and had ADD. The kids in the self-contained classes had picture schedules where the photo of that art teacher or the actual lunchroom were the main cues. In his case, he was an emergent reader so we needed some visual cueing, but it could be subtle and more icon based. He was learning to tell time as well, so the schedule could hopefully help him with that.

There was a debate about what was needed for him. His regular classroom teacher wanted something to let him know the major transitions of the day, the big location changes like lunch, P.E. etc. His resource teacher wanted more of a task/reward system -- letting him know that he had to do worksheets while her her room, math and then science in his regular teacher's room, etc.

I ran into that when I made schedules for the self-contained class and it ended up being very complicated when I factored in all the contingencies of a student's day -- a card for P.E., class party, fire drill, assembly, etc. The problem is, in a visual schedule, most of the items are static most of the time, but not all the time. It has to allow for some change without being too cumbersome. Sorting through tons cards to indicate lunch is at 11 am doesn't make much sense, especially if you multiply it by six kids with visual schedules. Why use all that velcro and those small, easily lost cards, to indicate something that is usually static and go through all of those headaches? But as soon as it's on paper, there's a special lunch period at 11:30 so that a class can do a field trip or something like that. So a schedule can't be absolutely permanent or it causes more trouble.

Visual task lists are rarely effective for me because they usually don't account for how dynamic special ed is. I never have the cards I need, or worse, I have too many of every card in the world. Instruction time gets away while I realize that a kid wants playdough and I sort through piles of cards to use playdough on the task list after worksheet. A task lisk has to be more dynamic than a visual schedule but not cumbersome either.

This boy has ADD and the more simple his schedule, the more effective it would be for him to read himself.

Finally, I came up with something that seemed to work. .The outside of the schedule was made with black paper, folded over twice to make a book. I used binder rings and a hole punch to bind it and wrote his name on the top. (which I'm covering in the picture. Apologies for pictures snapped with camera phone.)

Next, I made the major events of each day. I used different colors of construction paper on each day and used very simple large text and icons. A day would take up 3-4 sides of paper. Only one day at a time would be put into his binder. The pages were laminated to allow for dry erase editing or marking off events as they passed. When there was a change, like an assembly, we could mark through the class it was taking up and write the word "assembly." I often used post its to edit the calendar as well. He didn't necessarily need a picture of "assembly" to understand what it meant; the pictures were to reinforce the words.

And then I had to figure out the task list. Rather than build a separate schedule, I glued a fold over sheet of construction paper to make a back flap. I attached velcro to it and he had a traveling task list. (I laminated these together). It could fold over his main page and he would still have an idea of where he was in the day as he focused on the tasks of that setting. I attached an envelope to the back with his main task and reward cards. These could be as dynamic as needed. Since he could read and knew what words were, I also left post it notes in the envelope for changes. A dry erase marker also served to edit on the fly.

Finally, I made lots of copies of the main tasks he was expected to complete in each setting for the teacher in that setting. That way, when he came into library. the teacher already could have her "listen to a story" "do a worksheet" and "check out books" cards handy and didn't have to sort through math and science cards to find them, nor rely on him having them in the envelope on his schedule. If he didn't bring his schedule, those cards could easily be set out on a table.

It was never fully implemented while I was there, but he seemed to do very well with it when I used it.

I'd like to market it somewhere. The closest thing I've seen is a schedule from Attainment Company: http://www.attainmentcompany.com/xcart/product.php?productid=16288&cat=0&page=1

Zac Browser and Surrender

2008-07-01T23:33:00.005-05:00

To read this blog, you would think that I'm preoccupied with myself. There is way too much navel-grazing lately because I'm spending a lot of energy trying something new (the South Beach Diet) and because I really do not know what my job duties will entail at my new school. I am a speech implementer, which means I am certified teacher (or in my case, temporarily certified until I take the required classes) and I will do speech therapy under the direction and supervision of the SLP. The part of my brain that loves to plan and be the AT Bandita and try to figure out things for different kids is sort of shut down for the summer.

I wanted to thank Gaby8 (I can't find the comment to link to her blog) for pointing me to the ZAC Browser, a free browser a man made for his grandson with autism. It's the perfect web browser for a lot of kids I know. It's going on my list of favorite AT although I do not know if it's open source or not.

www.zacbrowser.com

My friend and fellow MFA student just got a beautiful article published about her daughter Chloe, who has cp. She talks about the "always happy" stereotype and the idea of surrender that Chloe has always been able to instinctively, well, surrender to, while the rest of us struggle with it.

It's at Brain, Child.

http://www.brainchildmag.com/essays/summer2008_Medders.asp

Chloe was one of the kids at Conductive Education last summer. She's a joy. And a diva. And when I think of my kids, and especially my two little boys, I. and C. at Conductive Ed, or all the other kids back at my home state, I really am sad.

I have AT ideas but no one to try them on for a few more months. Have ZAC browser. No Zac.

So yeah, I guess I will obsess about my health because there is no one else to obsess over right now. And I will try to learn the art of surrender, but, dammit, it's hard! I'm not as good at it as a sly pigtailed four year old I know.

More interesting news

2008-06-29T11:51:00.002-05:00

Is the Arthritis Painkiller Darvocet Really Dangerous?

From About.com

Darvocet is a popular medication prescribed to relieve arthritis pain. Darvocet is a combination of acetaminophen and propoxyphene. According to Public Citizen, a National Non-Profit Public Interest Organization, "Darvocet, Darvon, and all medications that contain propoxyphene should be withdrawn from the market". The organization has actually sued the FDA because it failed to act on a petition submitted February 28, 2006. In that petition, Public Citizen stated that propoxyphene:

* is physically and psychologically addictive
* is no more effective than safer alternatives
* has been associated with more than 2,000 accidental deaths in the U.S. since 1981

Propoxyphene was one of the 25 most prescribed generic drugs last year. There were 22 million prescriptions for propoxyphene filled in 2007. According to Public Citizen, "A large proportion of the deaths from propoxyphene occurred because most of the drug is converted into a metabolite that is highly toxic to the heart, lasts longer in the body than the original compound and results in cardiac depression. Adverse cardiac events associated with propoxyphene include an interruption of heart transmission of electrical impulses, slowed heartbeats and a decreased ability of the heart to contract properly." Public Citizen’s book, “Worst Pills, Best Pills,” has listed propoxyphene as a DO NOT USE drug since its first edition in 1988. Public Citizen states in its complaint that darvocet is a relatively ineffective painkiller -- and the pain relief is comparable to ibuprofen.

-- end quote

I seem to be getting all the grim news about RA coming across my RSS feeder. I spent a lot of time on Darvocet when I was first diagnosed. I guess a 17 year old doesn't have to worry as much about cardiac arrest. Interesting news though.

Rheumatoid Arthritis Drug Boosts Melanoma Incidence

2008-06-28T21:34:00.006-05:00

From Medicinenet.com

FRIDAY, June 20 (HealthDay News) — Rheumatoid arthritis (RA) patients treated with methotrexate have an increased incidence of melanoma and other cancers, an Australian study says.

Methotrexate (MTX) is a disease-modifying anti-rheumatic drug (DMARD) commonly prescribed to RA patients. A link between the drug and cancer has been suggested, and there are even concerns that the drug itself may be carcinogenic, but research examining this concern has proven inconclusive.

his new study included 459 RA patients (309 women, 150 men) who started treatment with MTX prior to June 1986. During a total of 4,273 person-years of follow up (an average of 9.3 years per patient), 87 cancers were identified.

The researchers found that the RA patients who received MTX were 50 percent more likely than people in the general population to develop cancer of any kind. In terms of specific cancers, the RA patients had more than a fivefold increased risk of non-Hodgkin lymphoma, a threefold increased risk of melanoma, and almost a threefold increased risk of lung cancer.

The increased risk levels for non-Hodgkin lymphoma and lung cancer were similar to the findings of studies in Europe and in the United States. However, the increased risk for melanoma identified in this study was new.

I've been on methotrexate since 1995, just so you all know. I knew about the increased cancer risk, but five-fold??? threefold??? 50% more likely than the rest of the world?

damn....

Lately the systemic risks associated with RA have been troubling me, even more than the RA itself. I had a routine health screen done in Feb and the cholesterol and triglyceride rates were high. I was able to bring down the cholesterol by half-heartedly dieting but the triglycerides continue to rise. Good news is that my fasting blood sugar was okay both times and I've always had low blood pressure -- even with the provigil, my blood pressure has risen to normal. However, my resting heart rate is a little fast.

People with RA DIE of heart disease. This post from last year freaked me out: Rheumatoid Death Rates Remain Unchanged. This quote bothered me: Because of the relationship between inflammation and rheumatoid arthritis and inflammation and cardiovascular risk, that may mean that "no matter what we do, we can't lower their mortality rate," Lindsey said.

"no matter what we do" keeps going around in my head.

I'm on day 5 of the South Beach Diet. I want to kill something, cover it in chocolate, and eat it while drinking a Dr. Pepper. I don't plan to be strict forever and I feel so silly shopping with my book in my hand. I'm very frustrated with the South Beach Site -- they charge $5 a week to be a member (except right now I'm taking advantage of my free 7 days). The site focuses on weight loss. Frustrating -- I don't care what size my jeans are. Okay, I care, but enough to make me want to try roasted eggplant -- I kid you not, I roasted an eggplant today. This is coming from me, who thinks a vegetable is yucky and the food pyramid consists of pop tarts, Dr. Pepper, and Baby Ruth bars.

I want to see if I can keep myself from having a heart attack in my 40s, from being one of those people who die of RA and its complications. There's a weight tracker on the site. What about a cholesterol tracker? Blood sugar tracker? Any indication whatsoever that the web site is designed to help people be healthy? Nope.

Lately, all of the studies in cardiology show the link between C-Reactive Protein and heart disease. C-Reactive Protein is a measure of inflammation. My current (former?) rheumatologist uses it to measure my RA progression. (Other docs have used SED rates). I'm want to get my last bloodwork from May and then compare my C-Reactive Protein levels between then and now. If eating all of this green stuff doesn't actually lower the inflammation in my body, then I think that South Beach might be a vain hope to stave off odds that it can't hope to touch.

If that's the case, if I'm going down on this on this boat, I'm going down with a Baby Ruth and Dr. Pepper, not a mixed green salad and a Diet Rite.

Finding a doctor

2008-06-09T12:52:00.002-05:00

When you have a chronic disease, finding a doctor is really like dating.

I'm taking this breakup from my rheumatologist sort of hard. It's an amicable divorce, but there's unfinished business. I'm transferring custody of my damaged joints, my high cholesterol, my medication lists, my lack of hypocretin, my confused immune system to someone I have not met, simply because my husband has a new job in a new state.

I will arrive with notes, records, X rays. Please do good for me, I will say, holding them up to a first year fellow in a teaching hospital.

Where is the match.com or EHarmony for rheumatologists? I want to be matched on 22 levels of compatibility too. I want to know how this person feels about biologics, about prednisone, about whether or not he/she can prescribe provigil or if I have to find a neurologist too.

My relationships with rheumatologists has been a sordid history, full of high hopes and expectations and sometimes tears.

First, there was the internist, not really a rheumatologist, just the best we had nearby. He explained nothing to me, just kept giving me more and more disalcid until I couldn't walk, had an ulcer, and fainted in the shower on mornings. I remember my family doctor, the man who delivered me, seeing me about 3 months after he'd referred me. He was angry at how sick I was. He called a colleague in Kansas City, 2 hours away.

I limped into Dr. Layle's office.
He is the first of two doctors to have saved me. He looked at me, 16, 102 lbs, walking with "a pronounced waddle" according his letter, and started me that day on DMARDs. He also gave me a big ol' steroid shot, warning me that it would make me temporarily feel better, but not to over do it. I awoke the next day without pain, for the first time in months. I thought I was cured.

Every 1 - 6 months, all through college, I went to see Dr. Layle. I didn't drive at the time, so sometimes I went with friends, sometimes with my mom. My mom and I would laugh at the face he'd make when I told him about another crazy plan I had. Was it okay to take martial arts? "Lesleeeeee...." he'd grimace. What about getting my nose pierced? Was there a risk of infection? What about drinking beer on my 21st birthday? Could I do that with methotrexate? "Lesleeeeee....."

I left for AmeriCorps NCCC, 10 months of running, trailbuilding, sleeping in tents.
"Lesleeeeeee....." He retired to fight the managed care system, he said. He saw what was coming.

I saw his colleague through my AmeriCorps year. She returned to her hometown. By that time, there was a rheumatologist closer to home, so when I returned home, I saw him.

He wasn't bad but not great either. We maintained. We dated causally, if you will. Prednisone came into my life then on a regular basis. He did not worry about the side effects, although I should have. My time spent asleep, my weight levels, and other metabolic changes were sneaking up on me, although I wasn't alarmed. Didn't I run a marathon? Didn't I just do AmeriCorps? I was young and healthy.

Time to take on grad school. The first doctor I saw here charged me $800 for the initial visit. I was shocked. He never really talked to me, only got angry when I didn't do my labs. I totally understood that, I needed to do my labs, but I wanted to talk, to help figure out what was going on. He had 15 minutes scheduled per patient and damn if I was going to throw him off. I wanted a relationship, he wanted a hook-up.

To be fair, he was the first to think my sleep was not normal and suggested fibromyalgia. I spent my first years of grad school in a terrible muscle-relaxer induced haze. I thought it was fibro-fog. It was med-fog.

I finally was fed up with $800 for 15 minutes and taking 30 minutes to remember to put on my shoes in the morning.

I found my current rheumatologist, Dr. Sattia. We sometimes do not agree on things, although we both agree that I probably don't have fibromyalgia. When my sleep reached a crisis level and I was sobbing in his office to please help me, he said that my lab work was fine, so I should not be sleepy. He did not want to deal outside of his specialty area, he had told me that from the beginning, but I couldn't figure out what the hell was making me so tired. That was hard to forgive. Also was the two months spent in Europe where I walked all over Galway, upset and in pain, trying to find a strange doctor's office to get the bloodwork I needed so that Sattia would let me have a refill of my prednisone. I swore at him up and down the streets of Galway, and I still swear my synovial cysts developed then. What was three more weeks without bloodwork? What kind of doctor withholds medicine from a patient overseas? But that stubborness also makes him a good doctor, so I grumble and do what I need to do. I know that I am better monitored now that I've been in my whole life. He lets me research and make the decisions.

The refusal to treat the sleepiness drove me to Dr. Brown and the sleep clinic, and the diagnosis of narcolepsy, and most importantly, those beautiful little provigils that give me my life back. Dr. Sattia could have given them to me, but I never would have known what was causing my sleepiness.

And I've had a pretty steady relationship with Sattia. I trust his judgement. He didn't panic at the COX-2 news, just said he'd seen the studies and thought that I would be fine at the dose that I was taking. When I called the on-call doctor at 3 am with vomiting and not being able to stand up, they called him and he called back, saying to go to the emergency room. That was the third middle of the night call and he always calls back.

We're both ready for me to start biologics again, but he doesn't want me to be far away if a reaction happens, so he's holding off on the humira.

So, um, that's my history. I never minded going to the doctor about my RA -- in fact, I've sort of liked those moments where I can sit and talk to someone about all of this that I manage pretty quietly every day.

And now, I start again.
Rheumatologist needed: Must be familiar with RA in young adults, enjoy good conversation, be cautiously aggressive with treatment. Must be willing to listen to consult, provide information, be a good partner but let patient make own decisions. Long walks on the beach are out at this point, unless you want to help me find a scooter.

Adapted Puzzles

2008-05-06T13:15:00.001-05:00

Hahahah. Posting from google docs! Go ahead and block blogger, school filters. I shall get around you anyway. Mwahahahah. There's a lot to tell on the special ed front, including having an offer for a classroom for a few weeks but ultimately having to turn it down. For those two weeks, in my head, I was an AWESOME special ed teacher. It also let me know how BADLY I want/need my own classroom.

As the year winds up, I want to post more of the adaptive materials that I've made. I'm leaving tons of materials with Jessie or at the school, so I want to remember how what I've done so I don't reinvent the wheel.

Right now, I'm gluing backgrounds to frame puzzles. The jump between wooden cut out puzzles and jigsaw puzzles is a difficult jump for many of our kids. There are some 25 piece frame puzzles I've seen in stores, but they often have a blank background and sometimes don't have true interlocking pieces. My favorite "step up" puzzles are the Progressive Puzzles by Discovery Toys, which, sadly, Discovery Toys doesn't sell any more. It's a set of 9 puzzles with true interlocking jigsaw pieces. Three puzzles are four pieces, three have 6 pieces, and three have 9 pieces. The designs are bright and while childish, are not babyish, which I feel is important. However, the background is blank and getting started with the right piece is sometimes difficult. So I am scaffolding a bit.

First, I put the puzzles together, laid them face down on the copier, then ran a black and white copy of each puzzle. (If you have access to color, don't use it. The black and white is more of a visual contrast and lets the learner know which pieces are done.)

Next, I cut out the background and rubber cement or glue it to the puzzle frame. Final results: a more intermediate puzzle for beginning learners. Note -- the paper on the inside of the puzzle won't last very long. But hey, by the time it's ripped off, hopefully your learner won't need it anymore. Still, you can always paste another. It works for 12 piece puzzles that I picked up the line at Walmart.

(I apologize for photo quality -- I took these with my camera phone while at school.)

I tried doing this with a 70 piece jigsaw puzzle with no frame. I modge-podged the outer edges down on cardboard to make a frame, but that rendered it inflexible and I was unable to put the pieces in once the glue dried and shrank. I will keep trying to figure it out though. Maybe glueing the pieces themselves to the background would work instead putting of modge podge over the whole surface.

Humira Watch

2008-04-21T18:51:00.002-05:00

It's been day 220 since I've sought approval. Been getting through on prednisone and injectable methotrexate. Weight gain, tachyarrhythmia, high LDLs and triglyceride levels, metabolic/blood sugar issues, random nausea and vomiting, and my joints are getting worse. I'm poisoning my heart and my liver and my joints are getting worse anyway.

But thank god we don't have socialized medicine. You might have to wait for treatment, everyone reminds me.

Interesting Medical News

2008-04-21T18:27:00.002-05:00

The Bypass Effect On Diabetes, Cancer

Summary:
Gastric bypass basically sends type 2 diabetes into almost spontaneous remission within days and reduces the risk of certain cancer. Wow. Bypassing the duodenum in rats puts diabetes into remission.

Like everyone else, I've sort of had a subconscious sort of prejudice about all of the options out there for losing weight. "Get off the couch and stop eating at McDonalds" my mean subconscious says when I see a weight loss commercial. But I'm starting to understand more and more what a quagmire metabolism and other things are as I'm getting older.

I watched a much loved aunt die of diabetes and it was awful. This knowledge would have saved her life. I remember in her last days, when she finally got out of long term care and back home, she was eating horribly, and I said "If she were drinking herself to death, we could call someone in to intervene and put her in rehab." No one carts someone away for eating hostess cupcakes. She was at home from the 4th of July until Labor Day, when she died. She was in her mid 50s.

She would have been saved by this surgery. However, as the article points out, the surgery is only approved for the morbidly obese and I do not think she would qualify. However, the process of the bypass itself, not the weight loss, is what seems to cause the remission in diabetes, so it would probably have similar benefits in those without obesity. My college roommate is now a type II diabetic and I worry about her.

Other medical news:
Work Disability Statistics Improve for Arthritis Patients
The often-cited stat "50% of people with RA will be too disabled to work in 10 years" appears to be no longer true.

It looks like 35% or something similar.

Hooray for small victories. I think it might be because people are getting diagnosed sooner, but hey, I'll take it.

Mesh... it's about the mesh

2008-04-10T17:02:00.003-05:00

So today, I got my XO laptop from One Laptop Per Child. I have been blogging for months about the coolness of the XO I got as a loaner. But for the next two or three days, I have two XOs! And I'm realizing how incredible these things are.

It's all about the mesh. XO laptops talk to each other. In real time. Not over the internet but through their own internal "mesh." I take a picture on one, it shows up the other. Not instantly, but close. I type on a word processing document, it shows up on the screen of the laptop 10 feet away.

The coolness of this is beyond words. The applications for a classroom of kids with XOs is staggering -- teacher puts two or three activities on the mesh, students log on, join the activity, and add their thoughts. Teacher browses to a website, puts it on the mesh, a kid joins in.

Right now, the worst thing about the technology I deal with is the grown up factor -- someone has to program the communication device and update the vocabulary. If the lessons are going to grow and change, I have to get there before the kids and set up the technology. A kid can't own the technology when the adult always has possession of it. I was trying to get a boy to print out what he wrote on his alphasmart the other day, but he was too possessive of it to let me plug it into the computer.

There are ways around that -- Prentke Romich makes a program that allows a computer to emulate their AAC devices and I can program that and transfer it over. I do that with Jessie's. R.J. Cooper's mini-auggie had a PC and pocket pc version of the software. Still... transfers are never smooth. Never. And the adult yanks away your machine and when you get it back, the files are different. And there are some that don't work after a transfer, something that breaks. It's how it always goes. Child ownership is a nice dream, but it's not possible in most of the technology I work with because the adult has to maintain it.

With the mesh, I could make S's spelling words as a memorize game on my XO, he could log in, get the activity, play a game with me, then keep that activity on his XO. He could change the words for his spelling words next week and I could check to make sure it's working by playing a game with him.

It sounds like a simple download, or the games of scrabble I play using facebook where my sister in Korea and I face off and grumble at each other from 13 timezones away. But it's different. It's made to be immediate. It's made to be something that I show a kid, sitting right beside him. "Okay, do you see that orange piece of notebook paper? That's your worksheet. Click on it." Not "Hold on... don't touch... see it's downloading. Wait. I have to put this file on it."

With more advanced students, there are the bulletin boards and the WebCT and Blackboards and things like that. Not real time, but close. Teacher can put an assignment up and everyone can download it. People can talk back and forth. But it's built on a college sort of model -- you think about it, you add to the conversation, someone else comments. That someone else can be in the next room or next time zone. That is really awesome experience. But it's really top down in collaboration.

But most the kids I know don't really get that experience. The internet is where the sponge bob games are. Maybe it's for sending email to people you love in real life, but it's not really until a kid is a teen that the internet becomes a tool for connecting. The mesh bridges that gap. A classroom is a dynamic connected place and I haven't found anything that can mimic or facilitate that connectedness except the XO mesh.

Some classrooms in our district have computers at every desk. I think of first graders coming into a room, switching on their computers, and working at their math problems, and I shudder. Where's the interaction in that? Where is the exploration? The program is dictating the next problem and they follow along. Perhaps we ought to set up Dilbert-style cubicles for them now.

Compare that to the XO, where the game of memorize your buddy is challenging you to is made up words he just put on there.

I'm downloading programs and testing mesh capabilities. Most of the original programs that come with the XO rock. However, I wish all of the programs could collaborate like the word processor. I was hoping that the words I typed in the speak (speech synthesis program) would be spoken by another computer, but no luck. Ditto for the music players -- I could easily jump into the current state of a jam session and use it as a starting point, but I could not make any changes that went back over the mesh to the original activity.

Anyway, I'm going to keep playing.
I'm having WAY TOO MUCH FUN not to.

My ATACP certificate arrived Friday.

2008-04-06T14:59:00.004-05:00

Wow.

Now, someone, hire me, por favor! :)

The AT bandita strikes again....

2008-04-01T19:55:00.003-05:00

So, I am the AT bandita again. So I creep... oh yeah, I creep....

What happens is that I'm often left with kids to occupy them. Or I'm often thrown into a class to entertain and break up dogfights while having little power to try to help change things to prevent the dogfights. Thank god for my little XO and the Gateway. Today I used the Speak application on the XO to play Simon Says when a crisis happened -- the internet was down and there was no computer lab for the day!! These kids live for their computer lab and flash games from NickJr, but we were able to survive as they typed commands to each other. It was awesome!

I've also requested and been allowed to pull a few kids here and there to ease the congestion in the special ed room. Because of that, I've been actually able to field test some of the AT I love. Again, not in any official capacity, but as a sneaky AT bandita. Here are my favorites so far:

Contents of my AT desktop folder:

Read Please 2003 Trial Version

I field tested several screen readers for the ATACP coursework, but this one was the best. The voices are the best of any of the free readers I've played with. You do have to cut and paste and that's a problem for a lot of users. A good interface too. The Trial Version never expires, but the fee version has more features. I have not tried the fee version yet, but I might one day.

EdWord
I finally got this one to work in a way that's really helpful. At the very basic level, it's a talking word processor that echoes keystrokes and/or words. I've had kids use it at this level and love it -- these are kids that can use a regular word processor, but often don't. The audio feedback seems to be such a plus. It also has a grid function where you can customize text and pictures. A user can click on the grid and the words will appear in the text document. I just now figured out how to make the grid editor work.

There are some really neat products from the DeafBlind Online site. I discovered them through OATS, the Open Source Assistive Technology Site. It's an awesome resource. I'm going to try to remember to put the link on my sidebar.
http://www.oatsoft.org/

The rest of the products are from www.RJCooper.com. He makes the best assistive technology/educational software out there, hands down. He does little things, like keep the program locked so that a curious and/or distractable kiddo can't stray out of a program unless he or she knows the hotkeys.

Spell-A-Word
Weekly spelling lists made fun. The program spells the word and then asks the child to do the same. I've seen kids jump with surprise - "Is the computer talking to me?" It's multi-modal -- words are seen and heard. I've seen some of my kids ace spelling tests when I give them the words, but still not be able to read the words back to me.

2+2

Same concept, but in math. Program goes through a problem, then the child types the problem.

Q&A
A bit harder. Program reads a passage, then asks a question based on the passage. Child must type answer. I'm waiting to use this one on my fifth grade vocabulary group. I think this has some awesome potential. It's in Beta right now.

Point-To-Pictures Studio
This is designed as a augmentative communication training program, but it's so much more than that. I use it to introduce vocabulary words. You could also use it to match vocab words to pictures and/or spoken text.

I've wished for a computer workstation for the special education/resource students where during spelling, for instance, when there are three or four different groups with three or four spelling lists, one or two kids could be doing their spelling via computer. It appears that my laptop is becoming that workstation by default. The kids love it. I just wish the adults in charge had time to see and understand it.

There's so much that can be done. I don't have the power to impliment it. Those with the power don't have the time or knowledge of what's out there...

So I creep...

Simplified Yu-Gi-Oh Training Games

2008-03-27T10:44:00.003-05:00

So, I work with an amazing kiddo for an hour and a half or so a day. He's probably 8 and allergic to his chair. Seriously. It's like it makes him claustrophobic or something. When I work with him, I tend to spend a fair amount of time saying "No" and "Come here." I don't like that.

I've been thinking alot about Dewey, about how to make education relate to what is real and loved and understood in a child's life. What is understood by most of my kids is cartoons, video games, etc. So I bought a deck of Yu-Gi-Oh cards, thinking that would tap into his curiosity.

What I didn't realize -- Yu-Gi-Oh is HARD. My husband and I, both grad students, struggled with the instructions. I was disappointed. But I've come up with ways to simplify Yu-Gi-Oh as the kiddo learns about the cards and how to play. Suddenly, a kid who only is adding single digit numbers now is comparing and subtracting four digit numbers to calculate points. We're to the stage where we play with just monsters, no tributing, and whoever looses them all first looses. Next we start subtracting from 8000.

I have to laugh because it's not a child innocently exploring nature in some sort of Montessorian idealized education. In my pursuit of educational goals, I end up using a lot of Sponge Bub and Pokemon and yes, Yu-Gi-Oh. But it's fun.

Here's a link to my google document of the games. I'm also excited because I managed to post this from school, which has a block on blogger, facebook, and livejournal. Don't get me started about how we should use social networking to our advantage instead of fearing it as educators. Anyway.... enjoy the training games.

The Art of the Gaze

2008-03-22T22:16:00.004-05:00

"What it also seems to reveal is that he is a man willing, for a moment at least, to be the object of your gaze, to let you look at what he's missing -- as long as you are willing to let him do the same to you."
http://potw.news.yahoo.com/s/potw/64390/what-are-you-looking-at/
A quote from Yahoo's People of the Web feature about Kevin Connolly, a photographer who has turned pictures of people staring at him (he has no legs) into a photo exhibit.

http://www.therollingexhibition.com/

Beauty. Total beauty. I love the fact that he acknowledges that the starers too are not just rude or insensitive, but vulnerable in a really obvious way. I sometimes stare -- I don't mean to. As I become more and more involved in this community, I notice people all the time. In fact, when the mysterious foot bumps appeared in Ireland, a country where EVERYONE is expected to walk, and briskly so, I made it a point to really notice others with disabilities while in Galway. It helped me keep the self-pity at bay and make me realize that I was part of a well-concealed army of tourists and locals limping, wheeling, and dragging themselves on crutches all over Shop Street. I was having a conversation with a girl in my program about a story I workshopped. It was dealing with a girl named Alex and her seizure disorders and disabilities. The other girl was saying how she just doesn't really know anyone with disabilities. As she said that and pushed through the crowds, a family passed us and the younger boy had Down Syndrome. I didn't have time to see if that registered with her. It wouldn't have with me until I made my decision to notice people.

I am pronouncing publicly that I am trying to notice, to not look away, to not pretend that people with disabilities are invisible.

And sometimes, in that process, I will stare.

Kevin Connolly's artwork forces the starers into an engagement, to ask them "what are you looking at" and to have to answer. Interaction is the antidote to aimless gazing, and his artwork forces an interaction in a way that's just breathtaking.

I'm sleepy and hungry...Researchers find high prevalence of eating disorders in narcoleptics

2008-03-09T15:23:00.002-05:00

Researchers find high prevalence of eating disorders in narcoleptics

Washington, Mar 2 : A new study by researchers at the Radboud University Nijmegen Medical Center in The Netherlands has found that the majority of patients with narcolepsy/cataplexy experience a number of symptoms of eating disorders, with an irresistible craving for food and binge eating as the most prominent features.

[...]

"Hypocretin, the neurotransmitter that is lost in narcolepsy, has been implicated in the regulation of feeding through animal studies. Earlier studies in narcolepsy found a clear increase in body weight. However, we did not find a correlation between binge eating and increased weight.
"Binge eating is apparently not the direct cause of the obesity in narcolepsy, and this suggests that metabolic alterations may be involved.
"Nevertheless, our study shows that the loss of hypocretin function makes narcolepsy patients not only struggle with staying awake, but also destabilizes their eating pattern, which makes it harder to stay away from the candy jar," Dr. Fortuyn added.

http://www.andhranews.net/Health/2008/March/2-Researchers-find-high-35664.asp

Interesting. I've always noticed my absolute craving for bad things is worse when my narcolepsy is worse, but I'd always thought they were part of my body's failed attempt to self-medicate by wanting a short term energy fix, like a Dr. Pepper, to keep me awake. Bad food for me has always been a profit/loss gamble -- what it costs me in energy to make good food at the moments seems to be more important than what it will cost me health-wise to continue eating bad food.

I need to get better at this, but it's nice to know I'm not the only narcoleptic in the world polishing off a box of cookies in some misguided attempt to stay awake.

I'm a trendsetter!

2008-03-05T21:48:00.003-06:00

From my RSS Reader:

Immune Systems Increasingly On Attack

By Rob Stein
Washington Post Staff Writer
Tuesday, March 4, 2008; Page A01
First, asthma cases shot up, along with hay fever and other common allergic reactions, such as eczema. Then, pediatricians started seeing more children with food allergies. Now, experts are increasingly convinced that a suspected jump in lupus, multiple sclerosis and other afflictions caused by misfiring immune systems is real.

The whole article is here:
http://www.washingtonpost.com/wp-dyn/content/article/2008/03/03/AR2008030303200.html?nav=rss_email/components

Hrmmm... it's all about the hygiene hypothesis, that modern living is too clean and sterile and makes our immune systems malfunction. I realize I am not, on my own, a scientific study, but I think of all the barn cats with ringworm I picked up, all the hay I climbed and jumped into, all the horse crap I shoveled, all the mud pies I made and yes, ate, and I think that maybe this hypothesis, at least for me, barks up the wrong tree. I tested my immune system.

But then again, I don't really have allergies, except hay fever that developed after I left the area I grew up in. This article deals with allergies and links all immune dysfunction to them. That's also a big jump to say that what causes allergies in one person would cause MS or RA in someone else. The auto-immune mechanism might be the same, but I can't believe that my immune system eats my joints because I didn't get enough pathogens as a kid. The end of the article dealt with trials of people with auto-immune diseases eating parasitic worms.

Yeech.

I'll wait for the insurance to approve my Humira, thank you very much.

Success!! (can I take a nap?)

2008-03-04T12:42:00.003-06:00

Blogging from my xo...
It's 1 pm on a school day and I'm in my p.j.s, watching The History Channel. I love snow days!!

I'm recovering from last week. I organized a R.J. Cooper road trip. With a few exceptions, I was disappointed at how little help I got, but I think I pulled it off. And I did get help, particularly on the first day (thanks Sue and Camilla!).

Still, it was good. Really good. 24 people got to work with R.J. -- some of those 24 really get a lot of attention and a lot of people trying new things for them, but many don't. For several learners, I watched holding my breath. It was amazing... J.C. was there. She was amazing. My mom drove her 350 miles for this. I now have videotape evidence to show to her group home and her school on how well she is capable of doing.

There were glitches all around, but all together, it was awesome. Even for people who disagreed with R.J., there was still a buzz. I've heard from a family who doesn't want to buy a computer because their son broke their last one, but they are inspired to start picture cards and signs again for their son based on his success at the workshop. I've also spent time talking to the mom of a boy who needs computer access...and she and R.J. disagree on how to do it. Still, there's now a huge amount of people thinking about this for this boy. I haven't talked to my friend yet whose 4 year old little girl worked with R.J. and he suggested a switch by her cheek instead of the direct select she's been using. Still, even if they don't go that route, it's in their mind as an option.

I am hoping this can help my colleagues see me not just as a low-ranking pest ("Can we try this with this kid? huh/ huh?") but as someone who can be a resource.

Oh yeah, more fame

2008-03-01T15:09:00.002-06:00

http://www.olpcnews.com/hardware/keyboard/xo_laptop_accessibility_typing.html

and just for fun:

http://www.olpcnews.com/content/music/screaming_in_digital_xo_laptop.html

Intervention

2008-02-18T20:12:00.004-06:00

Blogging while watching T.V. Only clean up, editing, etc during commericals.

A&E Intervention
http://www.aetv.com/intervention/int_episode_guide.jsp
53 - Brooke
Monday, February 18th 09:00 pm ET
Tuesday, February 19th 01:00 am ET

Brooke, 26, was a beautiful teenager with a magnetic personality. An elite gymnast on the cheerleading squad, she looked forward to a successful and athletic life. But tragedy struck in her senior year when she was crippled by Still's disease, an early form of rheumatoid arthritis. Her doctors prescribed narcotics to ease her pain, but Brooke soon became addicted. Her heartbroken family has sought new treatments to help Brooke, but she denies she's an addict. Now her family has turned in desperation to their last hope--an intervention.

From her dad, "Brooke doesn't want to deal with any pain. At all."
From her sister, "I'm not going to let her ruin my day."

I'm watching this episode of intervention. I've seen it before. My heart breaks for this girl.

What they see as her being "pilled out" according to the older sister I see as someone in PAIN who isn't getting the right kind of help. I watch and just want to weep for her. She's late to the sister's wedding shower. SHE'S IN PAIN! That doesn't mean she's doped out. It means she's late. She hurts. I struggle to make it to school on time every day.

I watch her standing at a curb and trying to step down and my heart just breaks for her. I know that walk, that waddle, the arms held out. She HURTS.

Not that she's not abusing the situation. She took two extra pain pills for her sister's baby shower. She's passed out on the floor. Not a wise move, but understandable. The family is looking for evidence that she's a druggie. She wants to be on her A game. She takes an extra pill. It knocks her ass out.

Brother in law "I'm trying to understand what would make you fall."

UH -- ARTHRITIS!

The family says things like "She's not the same person."

Hell, no. I'm not the same person as I was before I had R.A.

Sister (Brianne): "I don't want you to come up there when I'm in labor. It can take all day and I don't want you popping any freaking pills."

Tough shit. I imagine, if had a choice, Brooke would not want to pop pills either.

Brianne "I don't get it and I just want my sister back."

Nice. I'd like to be back.

Her twin Brittany: "I feel like she doesn't care enough about me to stay straight, even for my wedding -- the most important day of my life."

So, hearing that her sister passed out and broke a glass, she decides that Brooke couldn't stand up with her at the wedding.

Brooke: "Why? Why am I being punished?"

Brittany: "This has been extremely hard for me. I'm hanging up now."

I think that the sister could have walked up the aisle and then sat down, or sat on a barstool. You CAN accommodate a sick family member. If you want to. Plop her in a wheelchair. Or would that look bad in the wedding?

Now Brooke's calling to check on her sister in labor and her mom basically just hangs up on her. WTF?

It's like they can't take that she's sick and choose to focus on her drug use. They focus on the fact that they think she has Lyme disease and she was diagnosed with RA and accepts that diagnosis-- she must just be choosing to not get well and be a druggie. But you can't get the healthy girl back by taking away the drugs. Everyone is talking about their pain but not Brooke's. Not a single person has mentioned how much pain she's in, how it's hard for her to function, how they could help her get ready. Have you ever tried to put on hose when your hands don't grip? Someone could swing by and pick her up, for goddsake. DO you see those swollen knuckles trying to work the car key?

Brittany speaking to her dad: "What were my options? Let her stay in and hobble down the aisle, or show up pilled out or two hours late?"

Let her stay in and hobble down the aisle.
Let her stay in and hobble down the aisle.
That's the truth there. She doesn't want a cripple there. She wants the sister she had before.

Oh my god! Brooke has on high heels! Who the hell let her wear those? Does anyone know how much PAIN she's probably in?!?

The counselor: "The people who she loves most in the world are saying these horrible things about her and she doesn't know another way out."

The other counselor: "She is really suffering...she doesn't want to live like that, so she doesn't mind being loaded."

Dad speaking of the wedding: "We saw a glimpse of the old Brooke again." Yeah. In high-heels. OUCH! They'd rather have her smiling in pain and looking good than looking on the outside how she feels on the inside.

Mom: "I've lost you to prescription drugs and I want you back." Uh...there's this talk about getting her back from the drugs. But are they sure it's the drugs? Could it be the disease they want to get her back from? Can they separate the two?

Okay... commercial break. I know I'm being hard on the family. I know this. I don't know what the last 8 years of their lives has been like, how many times they've picked her up for an event, helped her get ready, etc., and maybe she's been nasty or thrown it in their face. Their hearts have broken over and over trying to make it better for her and her inability to get well is just stubborn. I see it happen all the time -- my old boss for instance. She was all sympathetic about my R.A. at first. But when years went by and I was still struggling, she'd lose patience, as if I'm choosing to not get well. She would ask if I were depressed.

But honestly, the family needs counseling about grief.

When I got R.A., the sweet lady who ran the regional arthritis center talked to us about the grief process. She looked at my mom and said, "Maybe you always wanted Lesley to be a pole vaulter and now she can't be." We giggled, but it was important to understand that I wasn't getting well, that our expectations for my life were going to be altered and that was part of the deal. This family doesn't understand that.

They miss her. They miss the healthy girl. It's like she's died. It's hard to deal with...

"Pain doesn't have to interfere with your life," the counselor says.
She gives him a dirty/questioning look. It's like she doesn't believe it.

"We have a lot of work ahead of us, a lot of issues we have to work through as a family, as a whole family," the mom says. Uh-huh.

"Go get well baby," the dad says. And what happens when she doesn't? What happens when she still is in pain in a year, even though she no longer takes all the pills?

The postscript on the screen:
Brooke's doctors still can't agree on a diagnosis for her condition.

After watching this episode, Brooke agreed she is an addict.

Big whoop! She's an addict. Really, that is totally the side issue. The real issue is that she's sick and no one understands that she will be sick, maybe the rest of her life, and they have to learn not to blame her for it. She needs good treatment. Maybe biologic agents?

I know I'm being hard on the family. She's taking 12 loratab, 2 oxycotin, and 12 of something else a day. She passes out. She shakes. She gets incoherent. She is obviously taking too much medicine. In the family's defense, that is obvious.

But I can't help but take her "side." I know what that sort of pain she's in. If I still felt now what I felt like then when I was 16, I might take the same amount of pills. Pain makes you crazy, makes you out of your mind. Drugs are worth the trade off when you're like that.

Okay, these are random thoughts while watching the TV show. I hope I wasn't too hard on the family.

"Someone could have gotten hurt"

2008-02-06T22:56:00.001-06:00

"Someone could have gotten hurt," the teacher says, angrily, as I help sweep up the glass from the ancient schoolroom door. She walks by but does not help.
Two other teachers and I gingerly pluck knife-blades of glass out of the frame.

I try not to look inside, try not to do any thing that might give more attention to the situation and make it worse. A small boy, 8 maybe. is sitting quietly in the arms of the occupational therapist, while the secretary cleans the cuts on his hands.
He is not the someone she is talking about.

I had been in the computer room when I heard the crash. I walked by the P.T./O.T. room and saw the special ed teacher picking up another small boy, this one older but tinier, and carrying him out of the room. There were shards of glass in the hall where excited fifth graders were milling around.
"Is everyone okay?" I asked
"Henry is still in there," she said. So I walk in. The lights are off, the O.T. has a boy in his arms, there's no blood I can see. The oldest boy is walking around, flicking his fingers.
"Come on Henry" I said. He let me take him by the hand, which he doesn't normally do. He's not that type of kid. I lead him downstairs to the classroom and return to help sweep up the glass and call the nurse on the intercom.

These boys are not the someones she is talking about either.

One of the real kids, the kids that are her business, the kids that are the point of the school, the ones who can read and write and talk and let us know what's bothering them....one of them might have been hurt. You know, a child who is not autistic, not like the 3 boys in that room.

Never mind that the 120 year old school building has paper thin glass that rattles when doors slam. Later, I learn a kid shattered three panes last year by slamming a door -- a real kid. Kids throw things, kids pound things. It's the nature of kids, all kids, the real ones and the ones that they all wish would just go to another school and leave them all alone. And it's the nature of glass to break.

She walked by one more time, "It was just a matter of time, ladies," she said.

There are times when it almost hurts, when you can just feel it all break right open at the littlest thing. I felt that way Monday, watching a non-autistic boy, maybe a real boy by her estimation, sleep on the floor of the counselor's office. Oh, he has problems, behavior and sensory and home life, enough to put him on the borderline between her kids and and ours. He and I were supposed to be working on spelling words, but he was snoring. Maybe it was nothing, maybe he was up late watching cartoons. I also have heard more sinister rumors about his home life. Whatever made it so he couldn't sleep at home might be nothing, or it might be something I couldn't imagine. I sat in the counselor's office for over two hours, watching this tiny little guy under a throw blanket, sleeping so deep he scared me, sleeping so deeply he sometimes wets himself.

What I wanted to do was pull him in my lap, hold him like a momma does, or should, and promise him that he would be safe.

As I cleaned up the glass and listened to the ladies complain today, I envied the O.T. in there with the bleeding boy, holding him, keeping him calm.

Whatever battles these kids are fighting, against autism, against whatever else is going on in their lives that I don't know about, against learning disabilities and developmental disabilities, against the frustration of not being understood -- these battles are bigger than I can ever dream of. They are real, so real that it hurts.

fame!

2008-01-31T13:12:00.000-06:00

http://www.olpcnews.com/use_cases/education/assistive_technology_laptop_child.html
wrong state but that's okay

It's been a hard day

2008-01-22T17:43:00.000-06:00

Dear School Board:

Buy. A. Bag. Of. Salt.

kthnkxbye

It was stupid icy this morning and school was not called off. That put me in a grumpy mood, and then a slip and fall in the parking lot didn't help. I landed on my butt, then on my laptop backpack, which had the Gateway and the XO smushed under me. Hello computer sandwich!

Can I get workman's comp for this?

Then, in front of me, a parent let out one of my favorite kids -- he has autism and wasn't happy this morning. He was muttering under his breath and shuffling his feet. He makes me laugh. I adore him.

I'm sore. I am waiting for my insurance to approve Humira.
I guess on days like this, I should take a celebrex. But they make me sleepy. It was already a 1 1/2 provigil day.

So what's an arthritic, narcoleptic speech aide to do? Especially since my new schedule has me _not_ being a speech aid, but really being a special ed aide. I love that, but I really felt not healthy enough for special ed work. And right now, I feel it. Every bone hurts.

I'm taking a nap.

Creating technology, not adapting it

2008-01-18T16:30:00.000-06:00

While on the shuttle on my way back from getting my ATACP in Co, I sat in front of two men coming from a different technology conference, which they were discussing. I was annoyed -- I wanted to sleep -- but then I became really engrossed with the conversation. These were people clearly on the cutting of edge of where technology, academics, and virtual and real worlds met.

The more I listened, the more I wanted to jump in. As we got off at the terminal, I accosted one guy and started talking about what I had just learned about access. It's not a second life if your screen reader can't deal with it. I wanted to make sure people with disabilities were included in this brave new virtual world.

The gentleman I talked to turned out to be an architect of the croquet project, which sparked my interest in open source. Now I have an xo and am now really trying to understand open source and figure out its uses in the AT world.

Why I start the story with me randomly chatting with a guy in the airport is because of something he said that the xo and now the Kenguru car (below)remind me of. I wish I could remember the quote, but he mentioned how the virtual world need not copy the inefficiencies of the physical world. He pointed to a pillar in DIA and said something like "In second life, there's no reason for that to be there. It's not holding up anything. We don't need to recreate it." He also spoke of using things like sonar, like bats do, to navigate the virtual world.

His project, Croquet, from what I gather from the net, seems more suited toward large scale, large graphics, and other high powered info. The xo is the opposite-- small technology. But both are revolutionary in their real-time syncing or meshing capabilities.

Still, I am understanding a bit of what he meant when I look at the xo. It's not, as I mentioned before, a scaled down version of a 8lb laptop, which is itself a scaled down desktop computer. Ground up, hardware and software, this was designed with a specific user in mind. Not adapted to the user. Designed for that user.

That's really a lesson we can learn in AT. As technology becomes more available, we really have infinite possibilities to solve AT issues. Like many other AT people, I tend to look at hardware first because it is so scarce. "Wouldn't it be nice if I took this alaphasmart and tried to solve _____'s problem with it?" This was stressed at the CSUN ATACP training -- we should start with the function we want, then find the hardware.

We also talked about Universal Design -- trying to build features into any project to make it as universally useful as possbile.

I would take it a step further - look at the functions we want, then design the hardware. Don't just adapt. Design. Why do we need screen readers to read graphical commands when maybe using tones to replace icons would be more efficient? With my slow painful acquisition of knowledge of open source systems on the XO, I realize I could really make the xo do anything I needed it to do -- I am limited (severely!) only by lack of knowledge in coding.

Case in point:
This car from Hungary. Tired of bulky wheelchair vans? Why are wheelchair vans bulky? Because they take a car intended for abled passengers and add a bunch of crap to it to try to make it appropriate for a wheelchair user. For some drivers, this might be a better alternative.

Note: My first embedded youTube clip! I've said before, I'm not a coder!

Crazy busy!

2008-01-16T22:12:00.000-06:00

I'm bringing R.J. Cooper the area I live in. I figure if I can't get people to go out and look at AT, I can bring AT to them, maybe. But I'm running around, trying frantically to get info out, conjure up hotel rooms, etc.

I'm tired.

Really tired. I have a million great job leads but I'm too tired to follow any of them up.

*sigh* Still, I'm doing what I love. Or almost. I'm making copies and fielding 8 year olds in meltdowns so other people can do what they love. But I'm close...

I'm close...

OLPC: G1, B1, G1 someday, S1B (One Laptop Per Child: Give 1, Borrow 1, Get 1 someday, Send Borrowed 1 Back Eventually)

2008-01-16T21:11:00.000-06:00

A post for www.olpcnews.com and a bit of explaining.

I have not gotten my XO yet, but there was a contest by the person who runs the site, Wayan Vota, about who needed to borrow his XO. I wrote in haiku form about how my Gateway laptop flying at my head is not a good thing. XO = much lighter. With help from my ballot stuffing Queensryche friends, I won Wayan’s xo last week. Here is my post about my first week with the XO.

I have bonded with Wayan’s XO. I am glad he told me he was going to reflash the memory when it comes back to him – I’ve had to flash the memory a few times already because, well, I do stupid things. Lots of stupid things. So this entry has been written and rewritten and is very late in being published. (It’s no longer hour 30 – more like day 7 or so.) I must learn how to back things up onto a thumb drive.

I am starting to wonder if I should just forward my brand spankin’ new XO to Wayan when it arrives so I don’t have to worry about what the kids at work might do to his. I know it was meant to be sturdy, but did Mary Lou Jepsen test to see what happens when someone licks the screen? Yes, the screen has been licked. Sorry dude.

Still, I’ve gotten see it used in really neat environment. The kids I work with are much more like the naïve user Negroponte is aiming at. The best blog post about the G1G1 program ever (http://blog.genyes.com/index.php/2008/01/05/olpc-xo-top-ten-checklist-for-g1g1-reviews) reminds me that every single person I come into contact with through my daily existence has preconceived notions of what computers should do and how they should act in our daily lives. Most of those notions have been conceived by Bill Gates.

I think, for those of us who have grown up with a keyboard in our hands, we should not call this a computer. A laptop is a better word, but still makes one think of the 8 lbs of dual processing flat screened monstrosity. This is a different beast. It’s not designed for YouTube or Disney Channel games. It’s not what many people have in mind when they think “computer.”

So it is for the kids I work with. They have taken to calling this “That little computer,” as in “Are you going to bring that little computer to computer lab with us?”

I explain that “it isn’t as fast as those big computers, so you have to be patient.” That seems to work while we’re waiting for an activity to load. These are kids who might, while waiting for internet explorer to start in the school computer lab, click enough times to open 10 or so browsers, no exaggeration.

The children I mostly use the XO with are elementary school in a special education class. Most of them can read, write, and speak, although at below grade level. They are vociferous consumers of media, including computer games. They are fearless computer explorers but without a lot of understanding of what they are doing. They click and pound. I’m sure some of the games are educational. I’ve seen a boy with autism who is primarily non-verbal pull down the address menu in explorer and click on the words he recognizes. The other kids ask to be put on a specific site if they can’t find it in the drop down menu, then click on pictures of cartoons they like until they come to a game. If a game is too hard, or freezes, they simply open another browser. Or shout for help. Or move to another computer. When it’s time to drag the class of 11 kicking and screaming out of the lab, there might be 5 extra computers to shut down, in various states of stuck.

My XO doesn’t really interest some of the kids, the ones more into their games. But a few kids, particularly 2 girls who aren’t really into their games, and one boy who really has a good understanding of computers compared to the rest of the class, absolutely love this thing. The first day I brought it into lab with me, a few of the girls had a blast on draw. I explained I had just received the computer (literally – I had to run home an hour or so before because the DHL tracking site showed me Wayan’s lonely XO was sitting unloved and vulnerable in a Crate and Barrel box on my doorstep.) and they’d have to figure it out themselves. By the end of the computer session, one girl had figured out how to change colors on paint. It took me another few days. (Dropper is small, arrow is big – I think that’s counterintuitive but an 8 year old didn’t think so).

For two days in a row, I was able to pry an 8-year-old out of a classroom she usually refuses to leave by whispering she could carry “the little computer.” As she swung it happily by the handle, I cringed and again prayed it was as durable as advertised. Still, it was worth the purchase price to get her to get out of the room without a struggle.

The same child loved memorize, saying “Wow, I’m smart, huh?” I’ve put spelling words and vocab words into memorize, but am having trouble saving and returning to them. I’m also having trouble with fitting the definitions onto a square because it auto-crops them.

Write was a blast for her. They are not allowed to open word, which I don’t understand, but word is usually used to type long strings of joyful gibberish, like skhfgshjshgglsdfng. So I let her type long streams of joyful gibberish in write. When we have headphones, I will try to let her type in Speak, which will only pronounce “real” words. Speak will be fun for reciting spelling words. Another child got great joy out of typing her name in speak.

I look forward to getting the GCompris suite running. In one incarnation of my computer, I did have the whole bundle going. But I am trying to avoid “learning games” and staying with activities – things my students can use to construct or explore. I particularly appreciate the kid-friendly word processor and paint programs in GCompris, but I can’t get them to run without the whole bundle yet. Ditto for Tux Paint.

Other activities that have been a hit:
miniTamTam – lots of fun. The other TamTams are a little hard for these guys, but miniTamTam is instant fun. Jessie also had a blast at miniTamTam.

Measure –
endless fun. When the teacher comes in to fetch her kids and you and one of her third graders are barking into a small green machine and then giggling hysterically, it does not make you look all that mature. But it was fun. This student is hearing impaired so measure might translate to something very useful for him. For instance, he has trouble knowing when he is shouting. I don’t know enough about the program to show if measure measures volume, but it’s something the speech path can help me work with.

Picture Quiz –
I have not used this on the kids yet. I’ve had to uninstall it to free up memory, but it’s a project I will visit as soon as I figure out how to make my own quizzes. I enjoyed seeing the inside of the XO. I really wanna open mine, I mean Wayan’s. (Don’t worry – I won’t.)

Story Builder –
ditto. They wanted to type stories for their pictures. These are kids who don’t voluntarily do things like that.

Cartoon Builder --
Not tried on kids yet. I’ve had fun with it.

Record –
What’s not to love about this? This was the activity Jessie licked the screen on, trying to kiss her picture. In about 2 minutes, some of the kids in the class figured out how to take pictures and promptly took a million goofy ones. Computer lab was over before they figured out videos.

Pippy –
One boy tried it and played a little, but was not impressed that he was programming the computer. I don’t think he understands what that means yet.

EToys, Turtle Art –
Neither the kids nor I have figured these out enough to be useful.

There is something about this computer – its small shape, its friendly greenness, I don’t know – that signals to kids that this is okay, this is their computer. It’s inviting. I did have to pry it away from one girl who kept repeating “my computer.” Again, thank goodness for the ruggedness. I’ve had an SD card eaten out of a device before – my work conditions are much more 3rd world than most.

Now might be the best time to speak of hardware issues. I’m struggling with the keyboard, but it wasn’t meant for me! A spare USB keyboard around the house takes care of that. My keyboard and infrared mouse were recognized and functional instantly – no “new hardware wizard.” As I sat in my principal’s office to take notes a few days ago, the sun came in over my shoulder and shone directly on the screen. The screen was amazing – not just readable, but sharp and clear.

I struggle with the upside down sd card insertion, but I’m okay with that. All visible appendages are subject to attack, like I’ve said before. I like my SD card hidden. When Jessie worked on the xo, she immediately picked it up by USB drive. My infrared mouse’s USB adapter sticks out way too temptingly far as well. I want to be able to somehow close the ears and still have a functional mouse. I will keep brainstorming.

What Jessie loved most, besides kissing her picture in record, was miniTamTam and the screen rotate button. Jessie is non-verbal, remember, but has very good expressive language. When she moved the mouse in miniTamTam, it did not go the direction it should have because the screen was flipped. She shrugged, raised her eyebrows, pointed the mouse and said “huh”? That issue really needs to be fixed, but I was happy because it showed me she knows how a mouse should move.

I won’t go into the needing an input mode for ebook mode because that has been covered.

This machine has a lot of potential as assistive tech. At the very least, the simple word processing capabilities put it head and shoulders above the alphasmarts I’ve used. Being able to see the whole screen is great.

Another device this might replace for me personally is my pocket pc. I have a sprint pcs 6700. I bought it mostly because of the keyboard, which is a fraction of the size of the xos (yet everyone marvels at the how large my 6700s keyboard is). I use it to keep quick notes when I travel, snap quick pictures, access email. In fact, my 6700 and xo have comparable processing speeds, memory, and price. Interesting. As soon as I have a reliable way to keep and sync my schedules and bank account info, I might be able to carry a little slim razr like everyone else in the world and ditch the brick I talk into.

Even better – I want to use my 6700 as a modem to access my EVDO Sprint network. That would be awesome!

I’m keeping “learning games” off of this computer. My students have access to lots of solitary learning by computer games. They know how to entertain themselves. What I am envisioning is for them to see this computer as a tool to construct something that is theirs, and then to translate that into using “the big computers” more effectively

Sad News

2008-01-16T16:47:00.000-06:00

A young man from my hometown, who I only kind of knew, passed away on Christmas
Eve. He had severe cerebral palsy.

He died of pneumonia.

I've been "in this world" of working with people with developmental disabilities for about 7 years now. In this time, 3 people with cerebral palsy who I sort of knew, or knew through someone else, have passed away.

This guy we lost on Christmas really is haunting my thoughts these days, making me understand some things I didn't understand before. Like how conductive ed can seem so cruel, but how scary the alternatives can be. I understand when people think it's fighting for the lives of their children.

There are some days I understand Ashley X's parents, as much as I don't want to. It was still wrong. I understand it though.

Would conductive ed have saved him? ABR? A communication device and good training on it early so he could have said he didn't feel well?

I bristle when people want to "fix" people I love. Disability is like any other fact of life, like blue eyes and big feet. Yet, when I hear news like this, I understand wanting to fix it, or make it better, or give him the best chance of not dying of pneumonia in his 20s.

Give One, Get Over It

2008-01-03T21:32:00.000-06:00

I've been anxiously tracking my XO laptop until I found web communities of people doing the same.

I got some helpful hints, like how to tell if my laptop has been shipped, etc.

But mostly, I am a bit frustrated with the whining of XO buyers/donors. IT'S A CHARITY! You did not order an ipod. You did not order from amazon. You ordered from a charity. Their business is not distribution. There were no promises made that you would get your laptop by Christmas.

However, I think Brightstar, the company olpc has hired for logistics, perhaps needs to get its act together. If they are charging olpc regular rates for their services, there is a problem. Olpc isn't getting logistics management, that's for sure.

I want mine. I'm like a kid. I'm anxious. I want to play. But I know it ain't about me. It's about a kid somewhere in Afghanistan or Rwanda. It ain't about ticked off people on the internet who want their toys. And I will try hard not to be one of them.

Happy 2008

2008-01-02T13:01:00.000-06:00

For personal reasons as well as professional, I am glad to see the end of 2007! It wasn't a very good year.

My resolutions are:

AT/tutoring
1) finish putting books into Jessie's springboard and upload them so that other people can use them.

2) work on making the XO a piece of assistive tech by
a) learning the operating system and trying to run standard AT/AAC programs on it with a windows emulation program

b) looking into touchscreens for it

c) learn python

d) contribute to the olpc wiki on assistive tech

3) take a programming class at the community college if I can

4) continue to try to talk my bosses into letting me, well, work while I'm here

5) find a job in AT

Other disability/health related goals:
1) join a gym
My school district had a great corporate wellness program and a trainer who has done some work on fibromyalgia. It's not the same as RA, but at least he's familar with auto-immune conditions.

2) get off predinsone
really
I'm tired of it. It's been two years now, the longest I've ever been on it. =I don't like this.

3) get off methotrexate
I'm still on it, despite my abulance trip in August. It's scary to decide I'm done with it -- for 12 years, it's saved me from disability. But I'm done. It's time to move on. I start Humira soon and I think I only need to poke myself with one needle, thank you very much.

4) examine mobility options
when I asked my nurse practicioner about helping me get a folding scooter, she said it would be fraud because "You're not there yet." She said it would be the same if I had a handicapped hangtag. I already have one.

When I am Christmas shopping and the only spaces are so far back that I go on instead of carrying out what my plans were, I think of that.
"We want you to exercise" she says. She would be a good conductor. When I'm almost in tears by the time I reach my destination and have no energy left for the activity, that's not a good thing. That's not "exercising." I'm tired of bravely struggling. I want to ride so that I have energy left for what I want to do.

I think I'm going for a folding scooter this year. It's not fraud. It's mobility.

Other goals:
Volunteer for a local agency that provides services to people with disabilities, like Horses for Healing or Champs.

Continue to help with AT exchanges and awareness for the agencies and people I'm affiliated with

Get everyone in J.C.'s life together for pizza once every two months or so. It doesn't have to be a formal microbaord, but there does have to be some communication.

One Laptop Per Lesley

2007-12-30T21:28:00.000-06:00

I've ordered my XO laptop. Sometimes I'm crazy excited and sometimes I think it might have been foolish of me to spend so much money that I don't have on a machine that I'm not sure I can use.

I'm going to keep updating my attempts to make it a useful AT device.

I also need to link to my various AT projects on here. Like the books that I've put into Springboard PASS software so Jessie can read them on her device. And the interwrite projects I've made.

My dream is to help the XO become cheap, usable AT and for AT users in the US to be allowed to purchase them for educational use. But first I have to learn python.

Here's the olpc wiki page on educational activities. I think I want to build the assistive technology page in the wiki -- it doesn't exist yet -- but I need to wait a little more until I understand what the heck I'm doing.

Also, the Family Center on Technology and Disability addressed open source software in their latest newsletter.

No luck

2007-12-20T20:40:00.000-06:00

So, no luck on the alphasmart quiz applet. I think we have to buy it. The alphasmarts we have, 3000s, are so old that I think they'd just GIVE it to us. I will research more though.

I did get to take home the interwrite pad that I used to bore my husband as I tried to force him to do second grade math on my laptop by using the bluetooth connection and sitting across the room. He was NOT impressed.

I think there is a lot of potential with these things. I wish the interface weren't so fragile -- that pen will last two seconds in A.'s mouth -- but I think it might really help the "lost between keyboard and screen" syndrome that so many students have. It's why the kids in the special ed class just pound on the computer and mouse -- they like flash games where they don't have to look down, put their fingers on a few keys, and pound like madmen to make something happen.

I wish I could transform the pad into a touch or switch interface.

No Lesley.
Bad techie.
No messing with someone else's hundreds of dollars of technology.

I will not use a screwdriver. I will not not use a screwdriver. I will be good. I will be good.

I am the AT bandita

2007-12-19T15:46:00.000-06:00

I haven't had Spanish since high school, so I am unsure on whether that is the correct female form of "bandit."

I haven't spoken a lot about my new job because there is not much to talk about. I want to be an AT person. I'm a speech aide, who, as of right now, has a lot of time on her hands because she isn't really used a whole lot.

The problem is, I'm a good employee. I want to help. So if I don't have anything to do, I start thinking of things I can do. I start thinking of students, how I can help them, things I know through AT training and research that others just don't have time to learn.

And then -- brick wall.

To quote TLC: "SO I creep...ohhhhh yeahhhh."

That's not really it. I don't sneak. I scavenge. I am allotted no resources -- no computer, no internet connection, no interwrite pad that every one else got. But I went to the interwrite training anyway, installed the software on my computer. I make up games and interventions for students that I never will get to use. But it's good for me, in a strange way. I get to learn about students, what I would do if given the chance. Today, I borrowed an alphasmart, on which I will try to load a quiz applet. I tried to get permission, but no one knew what I was talking about. So I will load the vocab words that I make into flash cards every week. This way, the kids might actually study the words and quiz themselves, unlike the flashcards that I find on the floor.

I want to be a very useful engine, like Thomas (Can you tell I spend lots of time watching cartoons with kids now?) But I'm not allowed to be, So I pretend that I am. I rumagge in the computer lab for old software. I download and configure software to go along with with the kids are learning in speech. None of it gets used, but that's okay.

Well, it's not okay.

But if I do babysteps, break out the alphasmart quiz applet one day, the R.J. Cooper matching applications a week later, go slow, work stealthly, I might be able to be a useful AT bandit.

Until then, I creep. Ohhhh yahhh

XO News!

2007-12-05T19:52:00.000-06:00

I'm keeping an eye on this link.

http://www.olpcnews.com/use_cases/technology/redux_mini_tablet_pc.html

I really think the touchscreen is the key here.

Will this change the world?

2007-12-03T22:45:00.001-06:00

One Laptop Per Child

The $188 laptop. I want one. I am getting one after Christmas and therefore donating one to a child in the developing world in the process.

Why do I think it might be appropriate for AT applications?
1)cost

It's not just a financial matter. Low cost = lower expectations = lower anxiety
No one wants to admit they don't know if a $6000 communication device will work for a child. No one wants to admit discomfort or the fact that they are unsure about their own abilities to make it work. So they come up with excuses.

2) portable and rugged as hell
It's designed for a third world country. Dust, dirt, liquids, heat, cold, rough handling. Yup. My kiddo with autism ate the SD card out of his mini-Auggie. So harsh environments are the norm where I work.

The only thing even close is a panasonic toughbook and it's a few thousand bucks.

3) good battery life
WAY better than any other off the shelf laptop. And you can recharge by solar power or a hand crank. How cool is that?

4) Operating system
Sugar
Open Source linux
At first, I thought this was a disadvantage. Windows owns the world, like it or not. Even Macs are hard to come by these days in schools. I just rounded up a whole bunch of outdated Mac software at my school. I wouldn't know where to find a mac.

But, I really truly believe that because this is open to the community, I can really find resources to help me make this do what I want it to.

For some people, like M., the fact that it doesn't look like a traditional windows OS will be an advantage. She has such a bad history of being intimidated by computers that this will seem like a neat toy. For the kids at work who stim endlessly on flash games on Nick Jr and see computers as a toy they use to isolate themselves from the world with, this will be different enough to be functional for them.

It's a kid-friendly OS that relies heavily on large, understandable graphics.
No five million different drivers and extra windows junk to mess with. Stripped down.

However, Linux severely limits what I can do with my laptop. I can't run any R.J. Cooper software, for instance, which I think is the best software out there for communication, learning, etc. I can't run most of the special education programs out there. No intellikeys, no boardmaker. I can do touch screen adapters though.

Still, boardmaker, speaking dynamically, intellikeys, etc are GREAT programs, however, many teach people and educators think they are the only games in town. This requires thinking outside of the box a bit.

And learning Linux!

5) video camera and still camera built in.
Can we say "picture schedule"?????

In comparison to a regular, off the shelf laptop, the functionality is really poor.
But when compared to similarly priced devices, like say an alphasmart for education or a video game console system or mp3 player for recreation, what this thing can do is amazing.

And I like being part of something, you know? As I get into AT, I spend a lot of time seeing solutions that others have come up with and tryng really really hard to make them fit for someone else. I spend my time looking at third party vendor sites and trying to convince someone to buy a piece of equipment for a child. By getting this laptop, I would be part of a solution. It sounds cheesy, but the line that got me was something like "We encourage you not to think of yourself as a buyer of a product but a contributor to an educational movement."

I like that.
I'm a sucker for cheese.
But man... if I can make it work...

My homework for an ATACP module

2007-11-15T19:41:00.000-06:00

This was an answer to a question for my ATACP training. We were to take a field trip in our community and observe accessibility. Here is my answer:

I decided to observe accessibility on my own field trip between Kansas City and Boulder. I have rheumatoid arthritis and am starting this trip after sort of an upswing from a summer flare, but I’m exhausted from taking care of family obligations.

The hard thing about an invisible disability is trying to distinguish between what I need and what I can get. For instance, I circled the remote parking lot, not wanting to take a disabled spot, despite the fact I have a tag. I don’t usually park in the disabled spots unless I am particularly sore or tired. But I realized I would be in satellite parking, alone, in the cold, possibly at night, while trying to manipulate luggage. The disabled spots were close to the bus stops and security shacks with nice curb breaks for my rolling suitcase. So social factors had a bit to do with it. Still, if I felt the potential to be a sitting duck, I think a person with a wheelchair would be even more vulnerable.

The remote parking lot bus was wheelchair accessible, but it was cramped and crowded and would be hard to negotiate with wheelchair.

I still don’t have my folding scooter and honestly, the remote parking would have been more difficult with a scooter.

Kansas City airport is relatively compact so I didn’t think about the scooter again until we got to the gate. I flew Southwest airlines and looked at the people standing in line and decided to ask for a pre-boarding pass. I had never asked for one before. The people at the counter were great and did not give me a hard time. I didn’t have to justify my blue pre-boarding card at all.

Until it came time to board. The cattle call began. All of the people standing in the A line looked me over as I passed in front of them. Ugh. I wished for the scooter so they would leave me alone. I’ve never felt so much hostility. Yet, as tired and sore as I was, I was so grateful to not have to use my little bit of energy for fighting for a seat.

I really wished for a scooter in Denver. It’s a huge airport. I paid attention to things such as whether or not I could have negotiated the gap on the transit system with a scooter. I don’t think it would have been possible. The transit system wasn’t staffed, so someone in a wheelchair who did get stuck would be in trouble. I saw a sign for “wheelchair passenger transfer” so I assume there was a different system.

I was impressed that the announcement for the trains were spoken as well as displayed on a moving sign system.

The elevators were nice and new and had few riders, unlike the evil balance-threatening crowd on the escalators. I noticed the Braille signage. However, I noticed the map in the terminal that I relied heavily on did not have any alternative format for people with visual impairments.

It was survival of the fittest at the baggage claim. I imagine one could ask for assistance with bags if needed. My shuttle was not accessible at all. Again, there is a number a person could call for an accessible shuttle.

It has been my experience that ADA accessibility is one thing, but so much could be solved with better customer service, better assistance, and universal design. It’s not enough to have “separate” assistance and separate shuttles. What is truly universal is the right to catch a shuttle at the airport without having to go to heroic lengths.

Post script: On the way home from Denver, I once again asked for pre-boarding. It was hard to do. I caught myself getting really flustered as I tried to explain. I was with a man who was blind and also pre-boarding. (He was, according to our presenter at ATACP relaying his experience with airport assistance, a “no see male.” Reminds me of Amtrak, where the “handicap” got on the train. Inclusive language. Learn to love it.)

Anyway, when I got to the plane, the captain asked me to wait while they got the man situated. That was fine, but behind me was boarding group A, anxious to get the coveted bulkhead seats. I needed help lifting my bag and all the help had left, assuming I was with the A group. I even looked around for a flight attendant. I had to ask the man beside me as the crowds pressed in on all sides. If it were easy for me to find a seat and lift my bag above my head, I wouldn’t have needed pre-boarding.

Still, I don’t know what my issue is. I’m upset because people are judging me when I pre-board and then I’m upset because I don’t get help.

The issue is that it’s hard to “come out” so to speak. I think of how much better my T.A. years would have been had I gotten my handicapped permit sooner, parked closer, and gotten accommodations like riding the golf cart to class. I realize how much of my energy went toward the wrong things. And I didn’t feel sick. If I had felt worse, I might have demanded my accommodations.

The neatest thing about the conference was all of the people with disabilities there. I saw more guide dogs and wheelchairs than you could imagine. A person who had blindness gave our presentation on tools for people with blindness and visual impairments, while using a screen reader to give his power point presentation. It was awesome to just be surrounded by so many diverse people. But then again, I saw how people with “real” disabilities compared to mine still struggle with how to accept help.

I was sitting in the hotel lobby with other conference-goers and a woman with a cane and guide dog came through. Her dog balked at the sliding door. It was obvious the woman was trying to find something. So the woman I was sitting with asked her if she needed directions. As they talked, my co-conference goer also took the woman gently by the elbow to guide her away from a column.

The lady jumped back and swung her arm away as if she’d been punched.

I understand that after awhile, you would get tired of people holding on to your arm without asking. But it seemed awfully rude. No one in the lobby knew how to act after that. It was an embarrassed silence. We are all professionals in the field of disabilities and no one knew what to say or do. We all gave verbal directions from our couches and that was it.

You live.
You learn.
You pre-board without stammering and turning red. Hopefully. One day.

Sippy Cup Logic

2007-11-09T18:20:00.001-06:00

I've been wanting to comment for a while about an ongoing debate the head conductor at work and I had been having when I worked there. I call it the tension between the adaptive and the conductive.

I've spoken of conductive education here. Conductive education is radical independence. So radical that some people have been very outspoken critics of it, saying it imposes upon the child. Conductive education is preparing the child for the world, not the world for the child. It is facing a harsh reality that people with cp do face inadequate medical care to help prevent secondary disabilities, like arthritis, pressure sores, infections. It's a tough world out there, kid. Better learn to walk. Whether you want to or not. And, to quote George Lopez, "Why you crying?"

(It sounds cruel but no more cruel I guess than "It's a tough world kid. Better learn to read and write.")

And it has worked wonders with some kids I know.

It is so much like the philosophy behind applied behavior modification therapy (ABA) in autism. It's a tough world out there, kid. Better learn to speak and not flap your hands when you're excited.

These both come from the medical model of disability. We will fix what makes you not work like the rest of us.

Philosophically, this hurts. This thinking offends me to the core. I worked with I. on and off for two years. He's amazing. He's perfect. There is not a thing "wrong" with him.

But in reality... I will never forget picking up I. one day from conductive education, a year before I worked there. There he was, walking, pushing a ladder. He had help -- a aide sat behind him on a rolling stool and moved his feet. (Little did I know that backbreaking job would one day be mine!)

Beside, a friend's toddler, who I'd also never seen walk. Walking.

The world should be better. People with cp and other related conditions should have better opportunities, better health care, better technology for helping them speak for themselves.

But Jesus Christ, there were two beautiful kids who might never walk independently walking! In front of me!

It's hard to argue with that.

But I am sometimes frustrated with conductive ed's anti-adaptation philosophy. I tried to explain it once and then it became a joke. Whenever I said something that didn't make sense (which happens quite a lot when you are distracted, tired, and stressed), we call it part of my "sippy cup logic."

I am in the business (or hope to be) of assistive technology. What I do assists. In my field, people build wheelchairs to climb steps. In conductive education, we might work a child's whole life to get him or her to climb steps under his or her own power. (In the social model of disability, we want to know why the hell there isn't a ramp there, that having those steps is as wrong as any other segregation or de facto discrimination, but that's beside the point).

I used a sippy cup as an example. I. communicates unhappiness by crying. When I worked for him, he would cry and I would run and get him something to drink. That was usually it. What I really wanted, more than anything, was to find him a sippy cup he could hold and manipulate by himself. When he was thirsty, I hoped, he would be able to get his own water, affect his own world, even without me. That, I thought, would be an amazingly valuable skill. I work in this world and can get my own needs met.

There are no sippy cups in conductive ed. When I. is thirsty, he reaches for the cup, which is out of his grasp. (A lesson learned! He loves to play in all liquids!) I, or another aide, pulls the cup to him, hold his hands over the cup, support his elbows on the table, assist him in tipping it to his mouth. He is learning to drink from a real cup, not a sippy cup, or a specially adapted "assistive technology" sippy cup. There won't be sippy cups everywhere he goes in the world, but there will be cups.

I understand that logic.

Yet for now, there are sippy cups in his world and there might not always be aides to help him with regular cups.

It's the tension between teaching and accommodating.

I worry that while I. spends years learning to drink from a real cup with a person to help him, he will lose the valuable independence that learning to get his own drink from a sippy cup can give him. The conductors worry that years drinking out of a sippy cup will make him have no desire or motivation to drink from a regular cup.

Do you teach a child how to work an electric wheelchair him or herself so that the world can be explored?

Or do you keep pushing the child into conductive ed so that he or she will learn to walk with two or three aides helping?

There is a way to do both. The two can work together. I often felt frustrated and out of place in conductive ed because all the accommodations were human accommodations -- I guess the logic is that humans can be trained to fade the level of assistance, but a sipppy cup, or other assistive technology, can't do so.

But I see AT as a road to freedom. To control the thing you rely on, whether a wheelchair or sippy cup, seems more dignified to me than to always need an aide who is making the decision about how much help you need.

That is the essential question in AT -- how to make someone own their own assistive technology and control it themselves, therefore controlling their own lives.

Control your life through your sippy cup.

I will one day write a book with that title.

I'm totally geeking out

2007-11-08T20:12:00.000-06:00

I'm here in Boulder, Colorado, finishing my ATACP coursework from CSUN. I was altitude sick for the first night or two, but now I'm adjusting.

There is so much here. I have learned so much. I almost don't know where to begin.

Here is what I am finding out with assistive technology -- no one has the time to implement it. Jessie has a springboard with really sophisticated linguistic capacity. Jessie has really sophisticated linguistic capacity, as shown by her combining of signs. I don't know how to use her springboard to help her advance.

M. is terrified of anything that makes her look or feel different, or anything we say she "should" learn. Yet she learned how to bowl on my Nintendo wii in like 2 seconds. She was a pro at her mp3 player, even though it really should have been too small for her to see with her visual impairment. I guess they bought her a BAT, which amounts to a really neat and expensive keyboard. But, um, no one knew how to use it, least of all Melissa.

My friend Z has been a special education teacher for years. She goes on weekend retreats with us. She told how the district had failing evaluations for assistive tech, so the tech person bought them all intellikeys with the software. She does not have time to learn intellikeys and does not want to. Guess what's not getting used?

Technology is a dirty word among most the people I work with. They see it as a waste of money and time and a substitute for human interaction. In the school I work at now, I see three beautiful alphasmarts in the resource teacher's room. She'd like more but they are too much money. Yet, while in the regular school lab, I observed two beautiful laptop carts, each with 30 laptops and a wireless access point built in. Wow. Wow. This is an elementary school folks, a small one at that. A half dozen alphasmarts would cost maybe what two of those laptops would cost.

Still, though, there is something disturbing about watching the special education class in the computer lab. Computers are not a learning tool for most of them -- they are a tool of entertainment, of cutting themselves off from the world, of shutting out. The speech teacher I work for does not believe them to be a useful education tool at all. Speech is communication and human interaction. And I see how for this generation of kids, their computer use is opposite of that.

But I still think it's possible to tap into that. It requires controlling the environment, which one can do easily on a computer. Some of these guys really can't write or type or even really use expressive language all that well, but can play complicated flash games and go ballistic when it's time to turn them off. Using the computer as a communication tool might change their lives if it could be done well. A man I sat with told me how he uses smartboards as an interactive computer interface for his class. Wow. I always thought of smart boards as how business people make presentations. (Maybe I'm bitter because when I was a T.A., we had chalk boards, but the business building next door had smart boards.)

I'm so frustrated. There's so much I want to do.

I was really interested in trying to build a lending library for my area, but I have lost the will. I think I need to work in AT first, to be able to take care of my own needs by having a job that will give me health insurance as I do this. There is a certain point that paddling upstream is too difficult for awhile.

"We need to find out why it's killing people" -- Rheumatoid Arthritis Death Rate Unchanged

2007-11-03T09:16:00.000-05:00

Rheumatoid Arthritis Death Rate Unchanged
By Carolyn Colwell
HealthDay Reporter

from Medicine Net.Com
MONDAY, Oct. 29 (HealthDay News) -- Americans are likely to live longer than they did 40 years ago, but not if they have rheumatoid arthritis, according to a new study from the Mayo Clinic.

"When you look at persons with rheumatoid arthritis, they do not seem to have experienced the benefits over the last several decades of improved survival the rest of us have," said study co-author Dr. Sherine E. Gabriel, a professor of medicine and epidemiology at the Mayo Clinic in Rochester, Minn.

The findings, based on a large population sample of mostly white Minnesotans, showed that women and men diagnosed with rheumatoid arthritis between 1965 and 2000 died at a steady rate of 2.4 percent and 2.5 percent per year, respectively.

During the same period of time, annual death rates declined for men and women without rheumatoid arthritis. The rate fell from 1 percent per year for women in 1965 to 0.20 percent in 2000, and for men it dropped from 1.2 percent to 0.30 percent.

"This suggests that the dramatic changes in therapeutic strategies for rheumatoid arthritis in the last 4 to 5 decades have not had a major impact on excess mortality," the study authors said.

Looking further, they also extended the follow-up to 2007 on the sample of those diagnosed with rheumatoid arthritis between 1965 and 2000, hoping to pick up any downward trend in death rates resulting from the impact of the newest medications, Gabriel explained. Unfortunately, they found no such trend.

Still, a decline could show up if future studies with a longer look back at 2000 and later, when some of the most significant new medications were introduced, Gabriel and others say.

Rheumatoid arthritis is a chronic disease where the body mistakenly attacks its own tissues. It causes inflammation and painful joints, and also may attack other organs such as the heart. About 2.1 million Americans, or 1 percent of the population, have rheumatoid arthritis, according to the Arthritis Foundation.

Cardiovascular deaths accounted for about half of the deaths for rheumatoid arthritis patients in the research sample. The findings did not distinguish between the types of cardiovascular disease that led to mortality. An earlier Mayo study confirmed a strong link between rheumatoid arthritis and congestive heart failure, however.

"It is possible that the cardiovascular interventions that improved life expectancy in the general population may not have had the same beneficial effects in patients with rheumatoid arthritis," Gabriel said.

The research did not study the causes of mortality, added Gabriel. She speculates, however, that since inflammation is thought to be a risk factor for cardiovascular disease, patients with rheumatoid arthritis represent a higher risk group, because their illness involves active, systemic inflammation.

The study was expected be published in the November issue of the Journal of Arthritis & Rheumatism.

The results are a powerful reminder that rheumatoid arthritis is a "very important and deadly disease," said Dr. Hayes Wilson, a medical adviser to the Arthritis Foundation.

"It's not just 'take two aspirin and call me in the morning,' " he said. "Get an early diagnosis and treat it aggressively. The consequence of not treating it aggressively could be excess mortality," Wilson said.

"We need to find out why it's killing people," added Wilson, who is also chief of rheumatology at Piedmont Hospital in Atlanta.

Dr. Stephen Lindsey, chief of rheumatology at Ochsner Health Systems in Baton Rouge, La., noted that while the study does not cover the impact of the latest medications, other new drugs did become available in the '80s and '90s. However, they apparently did not improve mortality, he said.

"Even when we make [patients] hurt less, they still may be susceptible to other chronic diseases such as heart disease," he added.

Because of the relationship between inflammation and rheumatoid arthritis and inflammation and cardiovascular risk, that may mean that "no matter what we do, we can't lower their mortality rate," Lindsey said. However, until that's established, "We need to pay more attention to cardiovascular status early in the illness," he said. "We need to be on top of everything and not just on top of their pain and disability."

Sicko Part II -- The Insurance Strikes Back

2007-09-14T19:01:00.000-05:00

There's been so much to say lately, but no energy to post it. I've been struggling all summer to keep my head above water -- if by water, we're meaning the physical exhaustion of working a demanding job and the fear that every new twinge means that something terrible is happening and I won't be able to keep my job and therefore lose my insurance.

It's been bad.

Health wasn't too bad till one night about a month ago. Methotrexate reaction, ambulance, ER, sat all night and puked on myself, stoned on whatever medicine was supposed to making me not puke. All it accomplished was making me too out of it to care that the cute little student nurses had to change me and clean up after me. If they'd answered their damn call light when I needed them to hand me the stupid bucket (excuse me, enuresis basin) they wouldn't have to clean me now, would they? I was sick, stoned, alone, and miserable.

The next week, I went back to my rheumatologist, ready to discuss what happened.
Uh-oh.
The office manager comes in instead.

Not good. At All.

I owe over $1000 for my last remicade transfusion. Apparently, the insurance gave us the wrong information.

I had an intervention with the doctor and the office manager, helping me figure out how to switch to a drug that is cheaper. I wanted to talk about my misadventure in the hospital. They wanted to talk about co-pays.

(To be fair, I think he avoided talking about medical issues because he didn't charge me for an office visit.)

Michael Moore, whereforartthou?

This is the first time in my life that cost has actively made the decision of what medicine to take for me. I've always thought that I would take care of health first and everything else later. No question -- I need my medicine to survive.

In the end, I was sent home with instructions to call my insurance company and a contract to pay the $1000 I owe. I put it on a credit card because 20% interest for the rest of my life can't be a bad thing.

I was also sent home with no remicade. Bad girl. No IV drugs for you.

It wasn't as if they refused to treat me because I couldn't pay. That sounds unfair. It was they didn't want to sink more money into me via IV if I couldn't pay it back. It's a private, one-doctor practice. To have a few thousand dollars debt on each remicaid patient would sink them. I understand that, I understand that it's not a hospital where you can finance things indefinitely. I remember bills for my dad's treatment going out years after he died.

Still, I felt a little like I was being turned away from the ball. If that tells you how strange my thinking is these days -- by the ball, I mean the privilege of having a relatively new and untried poison poured into my vein via an IV for four hours to turn off vital cells in my immune system that also prevent life-threatening infections. THAT was the privilege I was being denied. Damn. Cinderella's got low standards for her idea of a good time!

(Honestly, I wanted to dump Remicade anyway because it's recommend to take with methotrexate. After this last ER incident, I'm done with mothotrexate. 12 years of it. Good bye!)

The ambulance ride will cost me $600 after my insurance pays its $350.

I can't imagine what the ER will cost. It will be a 30% co-insurance on everything.

All summer, I was caught in this horrible tension of needing to work more to get more money to pay for my health care, but not being able to work more because of how crappy I felt. The good news is that my coinsurance has to hit the $2000 stop loss limit soon and then they'll pay for everything. I decided, dammit, for all that I have suffered this year, I'm getting a scooter!

Specifically, this one:
www.travelscoot.com

Wouldn't it be bitchin?

Oh, and breaking news: Sicko Part III The Revenge of the Sicko

Today I got a call that I got hired as a speech aide in the local elementary school. Seven hours a day. No caregiving. Lots of paperwork. I'm torn between my heart cracking down the middle when I see my kids at conductive ed and wanting to scream for joy that I have a job I can do. As I get further and further from my recommended remicaide date when I was sent home with no medicine, I feel myself getting achier and more desperate every morning. I drive to work thinking "Don't hurt yourself; you can't afford it" The next logical statement would be "Don't be in a job where it's likely you would hurt yourself."

My PT says that it's like being a compulsive gambler. I have only so much energy and wellness. I run on a constant debt right now. I'm on provigil, predisone, methotrexate, remiciade just to function. And instead of functioning, I push it to the limit. It's like if someone is in debt and you loan them $1000. Instead of paying off the debt, they go spent it in Vegas, happy to have the money for a second. But they are worse off than before. I am a compulsive gambler with my health while I do this job.

When did I become so scared? I remember the nurse in AmeriCorps trying to tell me how foolish it was to go in to AmeriCorps and I was so offended. I ran extra miles, did extra trips with the wheelbarrow, showed what an unstoppable force I thought I was because I thought I could will it all away. Now, I get frustrated with people who think like that. I sense the women at Conductive Ed think that everything is in my head. You don't see pain and fatigue.

I can relax a little this weekend. I am off the hook. If a knee hurts in my new job, I only have to figure out how I am going to get around it, not how everyone else will be effected. I feel so much better even as I really grieve about leaving conductive ed.

I know that it all starts over soon -- the deductibles and preapprovals and learning a new job. But now my energy is not tied up in surviving, I can handle it.

Sicko

2007-08-12T21:16:00.000-05:00

So, I've just returned from seeing Michael Moore's "Sicko."

Yeah, yeah. Everyone loves to hate him. Yeah yeah, he misrepresents. I know. Thank God for the Michael Moores out there, who call it like they see it, who aren't afraid of being accused of pandering. Yeah, a boatload of sick people taken to Cuba is a publicity stunt. But damn, it got them health care. I'd go too if I needed to. Besides, what is flying a fighter jet in front of a banner saying "Mission Accomplished" if not pandering at its best/worst?

50 million Americans are uninsured. 250 million Americans have health insurance. I, by sheer luck and a very tolerant boss, manage to keep my insurance. I'm not sure for how much longer, but for now, I can work full time.

Good thing too. My next Remicade bill is $1000. I make less than $1000 a month, people. My husband, less. We're grad students. I sat there and realized what a staggering risk I am for my husband to take on. I could financially ruin him with a bad flare, or a bad reaction to my next injection. I could drag him under. Then I realize we're both so far under from student loan debt that there's really nowhere for us to go. What's more debt at this point? $4000 for Remicade (if I were uninsured), $1000 a month for provigil. This is my life.

What shook me the most was the story of a young man with kidney cancer. All of his treatments were denied by his insurance. He died.

It reminded me of another story, of another young man living not too far away from him who also had kidney cancer at an obscenely young age. My dad was in his early 40s. His insurance also denied all the experimental chemo. So we tried other drugs, went into thousands of dollars into debt while he flew back and forth to Houston. The drug he was denied? It's now the gold standard for kidney treatment.

The bills were astronomical. We paid it anyway. When he died at 46, everything he'd work his whole life to give us was gone. His business eventually failed. His life insurance found a loophole and didn't pay. My mom eventually had to enter the workforce again at age 50, having been my father's office person for so long that she had no confidence in her ability to do anything outside of the home. In fact, work stress has contributed to her divorce from my stepdad after 6 years of marriage.

The couple in the film didn't go ahead with any treatments. The man died.

Was that better? To not finance the house, the business, to leave something for the wife and kids?

Hell no. I read somewhere , in an essay written by someone who has since died of her cancer, that children experience time differently than adults. Those years of having my dad alive -- sick, but alive -- were horrible, confusing, stressful years, but they were years where I at least had my dad in my life. My little sister only got him for 14 years and that seems like an obscenity. I barely remember being 14 at times. Those years were worth it.

Why do we live in a place where this is a choice? Why do I always feel this horrible "health insurance" monster hanging over me? It's been that way since I was 23 and no longer on my mom's insurance -- every move I make is dictated by health care. If I were not constrained by the insurance question, I have no doubt I would make more money. My skills are a bit like my dad's -- I tend to pick up a job here, a job there. A little freelancing here, tutoring there. But when I'm working 9 to 5, like now, all my energy goes to maintaining, not producing. I think that's why I wasn't a great grad assistant. I could teach. I could write. I could be a student. But I wasn't able to handle them at the schedule and pace needed to maintain insurance.

Canada is looking better and better all the time. If it weren't so damn cold....

Situation resolved, but sadly so

2007-08-12T16:34:00.000-05:00

So, I spoke to my family member from this post.
The client is question will soon be moved to an Alzheimer's skilled nursing facility. They were all sad, but relieved. Part of the frustration with him is the fear that he will hurt himself or that one of the other clients will get hurt while they are out hunting for him.

It's the end of his life in the community. But he's not in the community right now anyway. "Community" is a buzzword so often for a smaller institution. None of his staff has any training on how to help him. I hope he's better off where he's at.

I don't know if my call made any difference. But I called on a Saturday, he had an evaluation, and by Wednesday it was decided. I wonder if the fear of the State got the ball rolling, or if it was finally time.

I get so tired, you know, of forcing people to do their jobs, of making people take responsibility for what they've said they will take responsibility for. I'm tired of cursing the darkness. I'm ready to light candles.

Hear that?

2007-08-04T19:30:00.000-05:00

That's the sound of a whistle blowing.

Hear that?

That's the axe falling on my family's member's head for violating HIPPA. Okay, I haven't heard that yet, but I will. Soon. And it will be my fault.

I just hotlined a complaint to an out of state office regarding a group home a family member works in. One of the residents in the group home has Alzheimer's in addition to his developmental disability. His situation has rapidly declined to the point that it's unsafe. My family member is calling me freaked out because he keeps running away from the group home, refusing to get in and out of places, tying to jump out of a moving car. There are only two staff members and six residents. Many times, there is only one staff member. They can't safely retrieve him when he runs and hides.

There are alarms on the doors but they are not working.

They are not allowed to lock the doors for safety reasons.

All of this information could get my family member fired. Why? HIPPA. Health information Privacy Protection Act --grrrrr.... HIPPA is supposed to protect your vital information from people who don't need to know it. Insurance agencies can't access my records without having a valid reason. They can't look at my dad's medical records, see he died from cancer, decide that I too might be a cancer risk, and refuse to insure me.

(Wait. They do crap like that anyway...)
What HIPPA does in reality for the community of people with developmental disabilities is increase the culture of fear and silence that so many people have lived with for so long.

A friend of a friend in this field was no longer allowed to refer to her clients by name -- just their case numbers. Try hollering at a seven year old boy with autism "Get out of the road, case #4562!" How dehumanizing is that? It's like we're so ashamed of him, we can't even say his name.

If I'm out and about with a client who has autism or is in a wheelchair and a parent strikes up a conversation, I'm to give no info -- just let them stare and think "That poor kid." Most of the time, I tell parents of the child that I will probably talk about the child and ask if that's okay. Most people say "yes." They WANT people to know that S., running back and forth and hollering on the swingset, is not disturbed or trying to upset their children or being a brat. He's autistic. He likes to run and holler. I explain that to the parents and to the children in the park, who are understandably a little nervous when all 6 foot of S. comes bounding up to them to give a hug. I say "He's still learning to talk, so he hugs to say hello." They might not be great with it, but they understand.

Even with his mom's permission to say that information, I could get fired.

This blog makes me fireable.

To communicate with anyone about all that I've seen in this field, the people I've loved, what I've learned from them, where they are now, makes me fireable and sueable. Caring at all about people in this field has always been a bit of a liability because administrators take advantage of that -- it's now, thanks to HIPPA, a legal liability as well.

For my family member to call me crying and upset because this man tried to jump out of her moving car means she transmitted info to me that I had no business knowing. So she could get the axe. And J.C. who I love very much, lives in a group home owned by that administration, and I need to not burn my bridges with them if I am able to see her. They are just the type of place that rewards loyality to the administration over love for the clients -- like the Bush administration in micro.

I am going to hope that my report remains anonymous, like the nice lady on the phone said it would.

I am going to hope it was the right thing to do, that the case manager of this indivdual will investigate with sensitivity and come up with a better solution for him. I am going to hope that the group home will reply with concern and not with anger. I am going to hope that this was the right thing to do. But I'm tired of a field that gives underpaid caregivers great responsibility but little autonomy. I'm tired of worrying about who can make things right. I just have to do it and hope that it was the right thing.

Waiting to see what happens....
Afraid, even, to tell my family member what I've done....

"Right when I yelled 'Adam' he just sort turned and looked at me so I knew it was him"

2007-07-06T17:12:00.000-05:00

I just watched a flash video of the final moments of Joseph Erin Hamley's life.

*disclaimer -- disturbing*

Former State Trooper Larry Norman received 90 days for Erin's shooting. Erin was 21 and had an intellectual disability as well as cerebral palsy. His crime was that he turned to look at a police officer who was shouting at him, didn't or couldn't make his body obey the police the way they expected, and happened to be out walking the day that police were looking for a criminal.

Larry Norman's crime was being so damn sure of the situation that he felt justified in escalating it to the point that a man had to be killed. Irresponsible even if Erin had been Adam Leadford, the man they were looking for, as I've said before.

Most disturbing is the end of the video, where Erin is either dying on dead on the side of the road, and the officers are walking around calmly. I see no first aid being administered (admittedly, the video is too blurry for me to see if it were). However, the demeanor of the police is chilling, even if one or two officers are trying to help him. They're cool. If he doesn't pull through, well, we did our jobs. Adam's no longer a threat. You can hear Trooper Norman explaining why he pulled up on a situation that was essentially a stand-off, escalate it, and then kill a young man. Damn. Had to be done, boys.

If Adam Leadford had died from this recklessness, would anyone ever had known? Norman might have been a hero.

Now he gets 90 days in jail.

90 days.

and 30 days community service.

I can't even articulate how I feel about it. It was clearly an accident, but it was clearly Trooper Norman's recklessness that killed Erin. I don't know how you punish someone for that.

Inclusion Daily's Summaries of events

Also, I've seen posts on the web criticizing the family for taking the $1 million and not criticizing the verdict.

I'm sure they'd rather have their son, thank you very much.

There's nothing to be gained from locking Larry Norman up forever or having the family openly demonize him. I belive in mercy, which is why I would never make it as a lawyer. But I hope the public would be just as understanding if a developmentally disabled young man had somehow inadvertently caused the death of a police officer. I don't think they would.

In a house on Oak Street

2007-06-17T21:14:00.000-05:00

In a house on Oak Street...Near the town I grew up in, J.C. sits in her recliner. The T.V. runs in the background, but she pays little attention. She listens to headphones her grandmother bought her, or to the mp3 player I bought her. She flips through the scrapbook her grandmother made her, pointing at friends, cousins, family members. She covers the favorites with stickers. She sometimes plays games on the computer I gave her, but since no one else knows how to get into her games, when she clicks on something she isn't supposed to, as she inevitably does, no one can fix it.

She's 18. She loves to be out and about. At the movies, swimming, pizza hut.
But she rarely gets out unless its the every other weekend she's at her grandmother's. Her group home is staffed with one person for her and her roommate. It's a struggle to take either one into town, but together, it's impossible, and actually forbidden by the administration for safety reasons. So she sits. And she picks up the suitcase that means it's time to go to grandma's and won't put it away. She goes to summer school, but they called and asked what they should do with her.

I have a spare room.
And a guilty conscience. I could take care of her. I could move home. I've had kids that I've cared for and kids that I lost touch with, but none haunt me like J.C. I don't have to fail her. I don't have to live 5 hours away. I could move home.

I spend so much time and energy getting away from that town. The thought of living there makes my skin crawl.

I have a husband. He doesn't want to live there.

We could live close enough I could help out. But I don't want to help out. I've spent my life with this girl helping out, afraid to step on toes, to say the wrong thing, to offend anyone. I want to rearrange her life, make it so it works, make it so she has a life that involves friends and parties and football games in the fall. I want prom and ice cream and pizza and swimming for her. I want cute boys and an adaptive bike and a job she loves. I want graduation and prom.

I'm powerless. Who do I talk to about this? How do I approach people who are doing the best for their child/grandchild and say "I don't think it's enough."?

I have visions of visiting in 5 years, 10 years, 20, 30. And she will still be in hr chair, looking at pictures of people in a life she once had. And my powerlessness overwhelms me.

Good to know...

2007-06-11T22:58:00.000-05:00

Lending a little weight to my idea that the predinsone will kill me before the remicade does:

TNF Blockers for Rheumatoid Arthritis - Infection Risk Assessed in Older Patients

"Researchers looked for serious bacterial infections that required hospitalization. According to study results published in the June 2007 issue of Arthritis and Rheumatism, no increased risk of serious bacterial infections was found among users of TNF blockers compared with methotrexate users. Glucocorticoid use, however, showed a dose-dependent increase in serious bacterial infections."

Of course, this doesn't account for strange random stuff like fungal infections and sitting next to a lawyer with a deadly strand of TB on a cross Atlantic flight. Still, it's strangely reassuring to know the medicine I've been on and off of for most of my life is more dangerous than the big ol' dose of mouse protein I got put in my arm today.

I blogged while getting IVed, but the post was eaten somewhere in the internets.
Probably for the best.

Second IV down.

Haven't spontaneously combusted yet.

Conductive Education

2007-06-11T15:29:00.000-05:00

So, the subject of Conductive Education has come up in several conversations lately.
I am an aide in our local conductive education center. When my last job started feeling shaky, I called Conductive Ed and asked if they'd hire me for the summer. They remembered me from when I used to pick up a student there, so they said sure. Of course, that was before the flare hit, when I had confidence in my ability to do the physical stuff involved, and I thought I'd only work with S. part time and Cond. Ed part time.

So, today was a good day. I saw a boy I used to be waiver staff for but haven't seen in a year. I was so happy to see him that I wanted to cry. It's so hard sometimes to totally love kids and then have nothing to do with them. But I'm proud of the job I did with that family -- I came in, I was their first staff, I let them know that it was okay to have staff and other people looking after their child, and then I moved on when I took the S. job full time.

To see him again though was amazing. And I got to work with him today.

So what is conductive education?

In a nutshell, Conductive Education was developed in Hungary in the 1940s for children with motor disorders -- mostly cerebral palsy. Imagine taking a preschool classroom, having each child have his or her own aide. It's highly structured, incorporating stretching, motor activities, cognitive activities, activities of of daily living, songs, etc. Everything is focused on helping the child become self-sufficient, but not in the traditional way. Alot of the usual adaptive equipment (Standers, gait trainers, wheelchairs, augmentative devices, pecs, etc) just aren't there. Instead, when it's time to walk out at the end of the day, the child might push a wooden chair while an aide stands behind him or her and moves each leg accordingly.

I feel the same way about it that I feel about A.B.A. or any other intense therapy. It works for some kids, but I'm a bit uncomfortable with it. It's not child-centered. It's the opposite of child-centered. It's program-centered. I've heard it explained as that Conductive Ed developed in response to Nazism, so the philosophy is anti-special equipment. Besides the helmets and the walkers on the wall, there's not much equipment that would be out of place in a 1940s gym. The theory is that if "they" are coming after disabled people, then if you raid this place, there will be no disabled people here. No one in wheelchairs, no one that stands out.

Also, according to some sources, the plinths and other equipment are modeled after concentration camp beds -- a "constructive use of pain" according to a CBS story. YIKES!

There's not a lot of great evidence for or against conductive education. UCP concludes that it's at least as effective as traditional therapy. I would think that 5 hours a day of working on physical, occupational, speech, and cognitive needs would have results. And it tends to have good results, just from what I can see. The change in the boy I used to work with with amazing after he went to conductive ed. He moved around a lot more of his own volition.

At what cost though?

I remember a study of children with Down Syndrome that showed babies with D.S. actively manipulated their environments MORE at 6 months than at 9 and still less at 12. That learned helplessness sets in easy. (Note, again, I'll check the source, but since my readership is like nil, I'm not too worried about my scholarship these days. I will check to make sure I got this right though).

I think this was from the book Teaching Reading to Children with Down Syndrome. The author recommended errorless teaching to help build up confidence of kids with Down Syndrome, as they've already learned early that they try and fail, so it's better not to try.

Conductive Ed takes the other approach. You might have learned not to try, but we will make you try, or you will fall on your butt. We aren't going to hold you up.

Again, at what cost?

I know of parents who report that therapy is so aversive to their kids that it's set them back. I think that this could break some kids, that the act of being made to do exercises against their will would cause shut down, just as discrete trial after discrete trial would bore and ultimately alienate some kids.

Yet, I've been involved in so many traditional therapy sessions that sort of vaguely make progress. We do something here... okay, kid's had enough. We'll work on walking a bit until kid cries. Okay, we'll work on it again next week. Maybe. If we remember. Conductive education has goals, has a structure that traditional 1-on-1 therapies seem to lack. The idea that everyone in the class is doing their activities together is a huge motivator. When it's time to walk, everyone walks. Some with canes, some on their own, some with one chair, some with two. When it's time to answer questions, some kids are only expected to vocalize ANYTHING that's close and others are expected to spell the words, according to abilities. Conductive education is inclusive education at its best.

There are some of the same limitations that other highly structured activities have. For instance, if I am walking with a kid who I'm not familiar with, and I'm not doing things exactly right, she might just sort of go limp on me, instead of thinking "Wow. She's not holding my shoulder like the other girl does. What can I do to fix it?" It's the bodily equivalent of the confusion of a kid on ABA therapy shows if I ask "Who are you?" instead of "What is your name?"

But, the more advanced kids physically are working on that. There's a lot of prompting one kid with canes ("My sticks" he calls them in the cutest Southern accent you've ever heard) to look and figure out his environment. And he does. I have no doubt that he would not be walking in a traditional therapy system, but here, he does. And is expected to.

So, I'm not against conductive education. I think a lot of traditional educators could come observe on how to really structure a classroom for kids with diverse needs by it. I just don't think it's right for all kids. But how do you tell?

Again, I don't envy the jobs that parents have.

Will I crush my kid's spirit by trying this or will it give him the best chance to walk independently? How do you make that choice? Do you push? Or do you follow the child's lead?

I think if more traditional supports functioned better, it would be a harder choice. But as of now, it's probably one of the only games in town that offers real, tangible results.

A CBS News Report from 2004: http://www.cbsnews.com/stories/2004/02/24/60II/main601944.shtml

Positive Health: http://www.positivehealth.com/permit/Articles/Bodywork/suton47.htm

from UCP.org: (It's interesting to watch UCP's stance change throughout the years).

Conductive Education 2004: Research Status Report, 6/2004

Comparison of Two Alternatives of Intensive Training for Children with Cerebral Palsy, 3/2002

Effect of Physiotherapy on Children with Cerebral Palsy: Report of a Clinical Trial, 4/2001

Fact Sheet for Educators: Conductive Education: Update, 9/1997

Conductive Education:An Overview 9/1995

Risk

2007-06-10T00:42:00.001-05:00

So, if you had a 1% chance of dying from taking an aspirin, would you do it?

1% sounds like a low number, right? Then think of all the aspirin you've taken in your life. I'll bet you've taken 100 aspirin, or advil, or tylenol this year. Suddenly, that 1% doesn't seem so low.

I've been on methotrexate since 1995 without a single adverse event severe enough to send me to the hospital.

When I started methotrexate, the mortality rate I was given was 1%. My guess is that it's considered lower now. There is a significant mortality rate associated with simply having RA anyway. Ten years off my life was the last figure I heard.

So, from what I can gather, Remicade's mortality rate is around 2% to 2.8%. (Disclaimer: This was taken from a blog somewhere that referred to a Stockholm study that I can't find. This might be a wildly inaccurate number. ) Most of the cases I have turned up have been one of four kinds:

1) elderly individuals with histories of congestive heart failure or heart problems dying very suddenly a day or so after treatment

2) elderly individuals with pre-existing lung issues that can be caused by RA, methotrexate, or remicade rapidly declining into death after remicade treatment

3) people with latent TB whose TB becomes active

4) fungal infections, some fatal, striking people mostly in areas of the country where these infections are endemic (but considering that RA patients are now healthy enough to travel more, this could be an issue for me)

I've also found stories of T cell lymphoma developing in people with remicade, although, from what I can gather, these seem to be mostly patients with Crohn's Disease who received another drug called azathioprine.

Great.

I think that my secondary risks are low. I am not elderly, although I feel it some days; I do not have latent TB and because I work with children, I am tested every year and so are all of my co-workers. I do not have any known lung involvement. I don't live in the area where the fungal infections happen (although I keep getting random athlete's foot for the first time in years. Gross. I'll tell my doctor. ) I have never had azathioprine.

However, in the past few weeks, I've been wiping noses of sick kids at the school I work at. At respite camp, I had to help the nurse apply a topical cream to a kid's rash. (And we know rashes usually don't show up in good places. That's all I'm saying.)

I'm super careful about my gloves now. I wash my hands and use so much sanitizer that my hands are about to fall off. I earn dirty looks when I stop doing my job to run over and sanitize my hand for the billionth time. But I'm scared as hell.

This is where science and statistics confuse me. Do I, 31 years old, no history of heart trouble, no real lung involvement other than chronic bronchitis every few winters, have a 2 to 2.8% of dying from this medicine? Or is my actual risk much lower? Or, as my husband says, is it a 50-50 all the way -- "You either die or you don't."

Still, I haven't had a bad hand day in a long time. The fatigue, as always, is a killer, but the joint pain is really down again.

Is this worth my life?

What kind of life is it when the pain is bad? I remember just a few months ago, late April, lying in bed at respite camp, listening to the kids breathe, and being in so much pain and so desperate that I couldn't sleep. There's nothing more miserable than pain. It's the ultimate subjective experience -- you can't get into someone's pain. It sets you apart, makes you your own island.

When I'm at work at the conductive education center and I see that look on a kid's face, and I'm bending stiff muscles into a certain position, I think about how I would kill anyone trying to do that to me if my knees were sore. I can feel the cartilage creaking under my palms sometimes. And I'm in awe at the strength it takes at 3 years old, at 4, or 5 or 6, to simply keep working through whatever hurts.

Because the reward, the being expected and in turn, being able to be an active participant in your own life, is worth it. They don't know this yet... although I think they sense it.

I think that's my conclusion for the next IV of Remicade that goes into my arm on Monday. The reward is worth it.

But it still scares the living shit out of me.

It isn't about me..oh wait, it is!

2007-06-03T22:45:00.000-05:00

When I started this blog, I didn't want it to be about me. I wasn't disabled; I just have rheumatoid. That's an annoying fact of life, like being too short or not liking a mole on your chin or something. It's just part of me.

Well, flare-o-matic hit hard in March and suddenly I find that trying to maintain my dreams of getting my book published is damn near impossible when trying to find the energy and ability to pay my bills and feed myself are the goals of the day.

I don't want to just struggle to survive every day.

I need to learn how to be sick, how to not be all or nothing, how to not think I have to do a marathon to prove I can overcome, to not think I have to stay in bed all day to prove I'm sick. I need to learn that who I am every day doesn't depend on my SEDs rate (a measure of inflammation.) I am as powerful when I am limping as when I am running.

Who I am seems to be a moving target. What I can do every day is a moving target. Much more so the past year and really, since about March. That's hard for people to understand. I shouldn't be so upset at my ex-boss (although I do wish she'd stop contacting me). How can she understand it? I don't understand it.

This blog is supposed to be about disability. I had visions of it being the sort of informative how-to-blog that shows up in reputable places. I wanted it to be a well-researched discussion of disability and culture. Instead, I find that I need to start with my subjective experience. How can I write about Ashley X without admitting that I feel frustrated and humiliated and ashamed when I have to call in to work because I'm not able to lift and provide safe care to the children I work with who have similar disabilities to Ashley's? I feel for her parents now more than I ever did. (But I still think what happened to her was WRONG!)

This blog is about disability filtered through the eyes of someone on the borders between the two worlds -- I live in the "abled" world but have a foot in the world of chronic illness and disability. I work with people with developmental disabilities as if I'm a representative from the "abled" world, trying to assimilate the poor immigrant into job skills and not freaking out the normal people. And sometimes, when I'm tired, I think that the division is so artificial, so arbitrary, that I don't even know what I'm doing. It's like I'm carrying some secret, like I'm one of "them" but nobody knows it.

I had a great weekend respite camp. I spent today in bed and refuse to feel guilty for it.

U.S. Rep's Baby Has Down Syndrome

2007-05-31T00:55:00.000-05:00

http://www.time.com/time/nation/article/0,8599,1626569,00.html?xid=rss-topstories

So, this headline came across my RSS feed and I clicked. A Republican from Washington State,Cathy McMorris Rodgers, has a 1-month old son named Cole who has Down Syndrome.

She says: (quote from the Time article)
"This news has been difficult to get our arms around. Like every parent, we have hopes and dreams for our children," McMorris Rodgers said in a letter to constituents and supporters. "Although initially stunned, we are embracing our son and preparing for what may lay ahead."

It was a positive article. I deal with developmental disability so much that I forget this is a tragedy at first for parents, that's it's a shock and a big adjustment. Quite honestly, I think it's a probably the same sort of shock that you might have when your 18 year old daughter gives up a college scholarship to move to L.A. and try to be an actress. It's having to match dreams and expectations of your child with who your child is. But you have a little bit more time to adjust with a typical child. With a child with a developmental disability, all of those conflicts and feelings are there, right up front, almost as soon as you learn who your child is -- or before.

I think sometimes that the greatest gifts caregivers and strangers can give parents is to come in and see your children on their own terms. Not as "what should have been." Not the baseball player their father wanted, or the scholar their mother wanted. Not as autistic or disabled or different than the other kids in the class or on the playground. Just who they are right now in this moment. And that's quite a gift. I think parents of people with developmental disabilities don't get to do that as often -- they are thinking that every temper tantrum is a downward spiral to the institution and every good day might mean living independently. Every bad day is a judgement on their parenting and a cause to question it all. Should I have done more/less/different therapy?

Caregivers have their own pressures, but we don't have to worry about the future so much. We just get to love. And hopefully, allow parents to relax a little, see their children for the gifts they offer strangers and caregivers, and realize that it's okay. The world may say you need to try to therapy all the handflapping out of your kid, but it's okay to love the handflapping as part of the kid you love.

And that's a wonderful privilege. Who else has a job like this, where all you do is love? Okay, so you wipe butts and deal with Wal-Mart temper tantrums and end up with nothing to show sometimes when it's over, but you know what? That's never wasted time that you spent loving and serving another human being.

What I wanted to comment on was the sidebar article to the main time article, again, about early pre-natal testing. I discussed this issue here, so I won't go into it again. However, the title, teaser, and link to an article that runs alongside an article about a baby's life reads:
"Related:
The Down Syndrome Dilemma
Is a life with the syndrome worth living?"

wth???????

How crass is that?
Why is it even a question that a journalist feels okay to ask alongside a story about someone's BABY?

People don't think. The journalist who asked the question assumed that the readers would not be people with Down Syndrome. He/She didn't realize that by pairing the two stories with that headline, it gave this impression:

A U.S. Representative has a baby. Did it deserve to be born?

A step away from that question is does it deserve to continue living? Am I the only one creeped out by the insensitivity of that sidebar? And, I should assert that "it" is not an "it." HE is a 1 month old human being named Cole, thank you very much.

Perhaps I should ask whether life as a journalist is worth living.

A big ol IV of joy...

2007-05-27T00:11:00.000-05:00

So, I got my first Remicade treatment Friday. I had to miss a trip that I'd been planning for months to do it.

So far, no side effects. In fact, I didn't even really bruise. I did manage to score a free shirt and Girl Scout cookies. I sort of felt like a resident in a sick children's hospital. I was waiting for the clown to come by.

I had CPR training with a former co-worker who still works for S. and his family. I was too tired to take the high road and vented a little. S's mom, my ex-boss, sent an email asking why I was angry.

I went off a little.

She asked me if it was the prednisone.

This is why my view of myself of a person with a disability/chronic health condition gets so messed up. As soon as I assert that I don't think something is fair, or right, or that I'm having difficulty, I'm fair game for others to diagnose. It's dirty fighting. It's not fair.

I remember when my step sister was talking about how rude someone was to her. She accidentally blocked someone's view and instead of pointing it out, the lady started talking loudly about her -- "Look at her! She just thinks she come in here and stand in front of me... etc. etc."

My step-sister said, "But she was in a wheelchair. I'm sure she's angry about her situation, but that doesn't give her a right to be rude."

How do you know she's angry about her situation? Why does the wheelchair allow you to make that assumption? The lady was probably rude. And that's all you have the right to assume.

I remember reading an article in Listen Up: Voices from the Next Feminist Generation by Nomy Lamm. (I think. It's been so long ago that I'm hoping I remember it correctly.) In "It's a Big Fat Revolution" she talks about how, because she's overweight, every little verbal spar of city life renders her open to insults about her size.)

I feel that way. I feel that because this woman was my friend and I trusted her with my details about my health that I am now vulnerable to having it thrown back at me. As I have become more open with my employers and I discover that I have to take on some of the outward trappings of disability, like the parking permit, the taking an afternoon off work for an IV treatment instead of swallowing pills in the parking lot before I come in, perhaps getting a mobility scooter, I'm become closer to having everything I feel and think explained away and dismissed.

That's the worst sort of discrimination. I am the angry rude person in the wheelchair, I guess, so my point of view no longer matters.

I spent my whole life trying to not be dismissed because I was younger than the people I was talking to, or female, or for whatever reason the men at the table give for making my opinions not count. I never really freaked out about turning 30 because I liked the idea that I had enough life experience that people were starting to take me seriously. I hate to have that undone by a limp or a mobility scooter, or by being honest about my health.

What is inclusion?

2007-05-23T20:26:00.001-05:00

What does it mean to be in an inclusive or community environment?

I think of some classrooms I've seen, where there might be 15 typical kids and one or two with "special needs." The teacher is confused about how to handle the child, the other kids get upset that the child with special needs gets different privileges ("why does X get to go sit on the beanbags?"). When I was a para in this sort of classroom, a lot of my effort went to making the integration process happen, not helping the child gain meaningful things from the lesson. (i.e. making sure there were no tantrums so that the social studies teacher wouldn't kick us out).

Community based intervention is the same way -- I feel like that I often go "crash the normal party" with a teenager with autism or who ever I am working with. We would go to the park, he'd run back and forth on his play structure or on the swings and scare the preschoolers. That isn't really his peer group. This isn't really social interaction for him.

I sometimes feel like that being the one person with a serious developmental disability in a crowd is more for the typical people in the crowd and not for the person with the disability. I've explained autism to a lot of people in the park.

I think about the respite retreats I've been on for my work -- 15 or so people with developmental disabilities, 9 or so staff members. The retreaters are ages 4 and up, with a concentration of young adults. The staff is also heavily made up of young adults. There are some people who would call this a segregated environment, and maybe it is. Everyone has a disability. There are some who would shudder at this. Segregation. Warehousing. etc.

But my boss is amazingly awesome. EVERYONE is expected to be on their best behavior and do what he or she is capable of. There is no hierarchy of those with more cognitive involvement vs those with more physical involvement. Everyone just works together. Some of the young adults with mild impairments are put to work loading and unloading the van, or watching the younger retreaters. People are asked to fetch things for others. No mercy is shown anyone at the Playstation 2. The young teenage boys squabble over who gets to push the wheelchairs and tease the young staff members mercilessly.

I remember watching everyone playing at the tennis courts the last retreat. Two staff members and a young man in an electric wheelchair played basketball. A young adult pitches a wiffle ball to a teenager in a wheelchair. The guy in his late 30s with autism sings and dribbles a ball. A young adult and staff member help two of the younger kids blow bubbles. A bubble hits the young man in a wheelchair who is non-verbal and non-mobile and he squeals. A respite retreat seems like segregation to some people, but when I think of that moment at the tennis court, I realized that it was integration at its best. Everyone was equally valued. The people with less severe disabilities do not think they are better than the people with more. I love M. because she has that same attitude.

I've met with people on the borderline of intellectual disability who are angry they've been grouped with people with lower skills. I've met parents who have fear and hate toward other people with disabilities who are lower functioning than their kids, afraid that the lower IQ scores will rub off on their kids if they have to sit together.

When it comes down to it, the rest of the world doesn't care who is first chair violin and who is second. They don't discriminate in discriminating. I understand how parents want the best for their children, but the point shouldn't be that their child is too good for the treatment that other children are getting. The point should be that all children have the right to appropriate placement, no matter what that placement is. You can argue your child would learn better in a typical classroom, but it breaks my heart to hear parents argue this point by pointing out what the children in the segregated classroom aren't capable of.

Inclusive settings are where everyone is valued for his or her contributions and is expected to make contributions. I believe it has nothing to do with the ratio of people with disabilities to people without.

In fact, when I do a training soon, I'm going to present that my definition of institutionalization is to live in an environment where one is not allowed or expected to participate in the choices and responsibilities of daily living. Institutions are not about buildings or staff ratios. A community based waiver can be an institution. A good large living situation can not be. Just as a weekend camp of people with disabilities can be more inclusive than putting one kid with a disability in a room full of people without.

It's all attitude.
Not numbers.

Unfortunately, attitude does not show up on pie charts.