Thursday, May 31, 2007

U.S. Rep's Baby Has Down Syndrome

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.

Sunday, May 27, 2007

A big ol IV of joy...

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.

Wednesday, May 23, 2007

What is inclusion?

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.

Sunday, May 20, 2007

Living in Fast Forward -- Alltel arena and the Kenny Chesney concert

So, we saw Kenny.


M. calls him her husband. The show was awesome. I didn't wreck a minivan. That family friend worked her butt off for us, but no luck on meet and greets. It was okay though.


At one point in the whole ordeal, I began to just get pissed. There were 18,000 people there and none of them have a freakin clue what M. has to go through just to get there to see her favorite country star. This is her life. And very little of it has to do with disability and a lot of it with stupidity -- not hers, by the way.

First of all, after locating hotel, changing, loading up the van, locating the arena, circling a few times and asking a few police officers where the disabled parking was, getting nervous, I found the big wide, almost-empty parking lot in front of the arena. Great! I breathed a sigh of relief as I piloted the mini-van into the entrance.

A lady wearing a special olympics bracelet told us "Suite holders only!" I smiled and said, "We have a disabled permit."

"Disabled parking is full." she says. "There are 12 spaces and I've already let 14 in."

(12 spaces for an 18,000 seat arena. 1 in 5 Americans has a disability. Do the math.)

I smile nicely, say "We don't have a choice on where to park. We can't just park and unload a wheelchair anywhere."

She tells me I can unload M. here and then park elsewhere.

No way and I unloading M., who gets terrified of crowds in Wal-Mart. This is her first arena concert. I'm responsible for her. And after the concert, do I just leave her in a dark parking lot while I walk god-knows-how far to get the van? No way.

But the discussion between me and the guard goes no where. "I get yelled at either way" she says. "If I let too many in, the suite holders yell at me." I ask for a number to call because I understand that someone on the front lines has no power and it's not her fault. I think the damn suite holders can freakin walk, but I'm polite.

While I'm calling the box office, another van tries to pull in. I confer with them and we spot disabled parking (and we think, regular parking, but we're not sure) on a side street? parking lot? we don't know for sure. I know it's a street because I just drove down it, but the yellow line is faded, but off to one side, there are diagonal parking slots. Great. The wheelchair lift will unload directly into the street. Lovely. But we make it into a parking lot if it wasn't before. I start to think of loading a chair back into the van in this spot (under an overpass) in the dark, and I shudder a bit.

Everyone I see in a wheelchair or with a permit, I tell them "write a letter about the parking."
I'm pissed but I try not to go on and on. The best way to deal with this stuff is to deal the best you can when it happens and raise hell later. And M. is always anxious and I am always eager to not be upset around her, to make her feel at ease. She's good for me like that.

So, we have to cross at pretty much a blind intersection. There is nothing to do but for me to stand in the street, wave nicely at the cars, and not move until they stop and she can mosey along in her chair. Lovely. I'm a crossing guard. Don't kill me or the girl in the wheelchair. Thanks.

I'm a total bitch in the crowds. I just am. I plow through ahead of her and she follows me. "excuse us. Coming through." I know no one is looking for her 3 feet off the ground, I know she's nervous, I know she doesn't want to be rude. So I am rude as hell for her. Okay, I smile while I do it, say "Excuse us everyone, we're coming through" but I don't weave around. I'm surprised at this sudden bulldogness. Maybe it's because I might soon have to have my own scooter if my rheumatoid keeps getting worse, or maybe it's just because I know how much this show means to her and I'm angry that it's so hard for her to do something she loves. And I think it's hard for me to see a concert. I have no clue.

I get my purse searched. M. points out that she has a purse. "That's okay" the guard says. I guess the wheelchair renders one incapable of raising hell or making a Kenny bootleg. Good to know if I ever want to carry out a plot against an arena, and if the parking situation doesn't get better, I might want to.

We get into our seats. She doesn't want to sit in her chair anymore. I understand. She likes feeling grounded and stable, and this chair, even turned off, rocks a little. The disabled seating is pretty good, in front of the box suites. (Except those rich %#^#%!s got better parking). It's a completely unobstructed view, and we are off to one side, but pretty close to the stage. I realize that it would have been possible for us to get her chair onto the floor for better seating, but this is good.

So I spend the concert sitting in a wheelchair, standing only every now and then when I get excited. She stands a few times, but because we are in front of a rail, she's shaky. We climb up a short flight of stairs (leaving the chair there) to go get food. The crowd is a nightmare. She holds my arm. Carrying the food back down the steps is a bigger nightmare.

The attendants at the disabled seating areas were awesome. They would stop the foot traffic to let the chairs come through. They caught my bottle of water when I dropped it trying to get M., two mini pizzas, two large fountain drinks, two bottles of water, and two purses down the stairs. I have balance issues with stairs myself. I can't speak highly enough of the attendants. They also ran off any non-disabled "visitors" in our boxes who would try to sneak in from the cheap seats.

She had a good time. I didn't realize until halfway through the first act that because of her visual impairments, she really couldn't see the stage. She could see the big screen though. Sometimes, she would sing and get excited and do the standard concert stuff. Sometimes, though, I would see her tremor all over and not really have an expression on her face. I worried about the lights and her seizures. When I went to the bathroom, I stupidly bought a flashing lei and put it around her neck. Her seizures aren't triggered by lights, her mom had said, but when I looked at her with that around her neck, her good arm tremoring, her whole body shaking, I freaked and took it off her. She often would either seize or freeze up at the lights with that blank look, and I would shake her shoulder. I was sitting on her "bad side" anyway, which bothered me. Sometimes when the lights would blink really fast, I'd cover her eyes.

By the time Kenny came on, she was totally spent and exhausted. The coolest thing I've ever seen, though, was when she caught sight of him. The curtains fell (I remember that move from "In the Round, In Your Face" --Def Leppard circa 1988) and there he was. I looked over at her to see if she spotted him. I could see her searching with her head turned (she sees better out of the corner of her left eye) and then when she spotted him, she sort of shrieked. It was awesome.

She sang along on some songs, but mostly just watched in total awe. And yawned. She was spent. I totally adored him for her, did all the concert things, the waving of the arms to get his attention, the screaming out lyrics. I've picked up most of his lyrics by osmosis or by listening to him with her in the car. (Four hours to Little Rock can make you know a CD really well).

After the show, when she stood, she almost fell. She was dizzy. Every muscle in her body froze and I couldn't tell if it was panic or seizure. But we got into the chair, and up to the merchandising table. She couldn't see, of course. Too many people. We found a place to the side and I waved at a lady. "Excuse me ma'am, can you bring some hats over here? We can't see them." The lady was understandably pissed at first that I demanded that, but then she spotted M. (There's really no good way to say "Bring these to the girl in the wheelchair because her vision is bad." without totally insulting M.) But because the lady had to stand with the hats so we wouldn't steal them, M. got nervous to make her decision. "Which one do you think I want?" she asked me.

If I ever needed a sign that I was too overbearing, that was probably it. So I joked with the hat lady about whether or not Kenny was for sale while M. decided. Then when it was time to go, a little 20 something leaned totally around M. while she was putting away her money., like M wasn't even there. I saw her foot under the chair but said nothing. "Come on back, you're good to go." is actually what I said. Little girlie needs to learn manners. M. did not crush her foot, to my eternal disappointment.

Because we had waited a bit for the crowd to thin out, I was worried about loading up the chair under the overpass. There were some people around, but as I fumbled with the tie down straps, the crowd thinned more and more. Alone, at midnight, in a dark parking lot is not a good place to be. I again cursed the suite holders and their well-lit, security patrolled parking. Cars swerved around me while I knelt on the pavement and attempted to secure the chair. I finally just loaded it up, only loosely strapped in, for the ride back to the hotel.

We had traded our two beds in for a king bed in a room with an accessible bathroom. After working out blankets, (she's a blanket puller!) we crashed. I dreamed strange dreams of getting lost, of driving, of us getting hurt. I was more nervous that I thought I was, I guess.

Next morning was a rush to awaken and shower before check out. The "accessible" shower in the hotel was not roll-in, but was fairly low and had sturdy grab bars. I was very proud of M for even attempting a shower in a strange place, considering her bathtub phobia.

That's pretty much it. I fixed the straps on the wheelchair and took a very worn out M. home.

It shouldn't be this way. It shouldn't be this hard. The parking was part of it, but also having to fight the crowds when you have limited mobility was another. The lights were another. What should I do, demand that Kenny have no light show so that she can see him? Demand that we get served pizza instead of fighting the crowds? Demand she have more energy? Demand that people see her when she's in the wheelchair? Demand that whatever gave her the disability take it away? I know lots of people with lots of disabilities. But I've never met anyone with such a perfect storm of disability, of small things that add up so much, that make every day of her life such a struggle. She's awesome.

And I'm exhausted. I drove there with an icy hot wrap on my wrist, trying to hide the fact that I was in a lot of pain, and more importantly, unsure of my ability to help her if my pain got bad. Had I not already planned this trip, I wouldn't have done it without a third person since my rheumatoid has flared. But I knew I had family in the area to call if things got bad.

She's learning to be independent. I'm learning to ask for help. We're good for each other.

Anyway, good night, Kenny, where ever you are. You made M. very very happy.

Friday, May 18, 2007

Heading down the highway...

So, tomorrow M. and I head down the highway to go see Kenny Chesney. She's so amazingly excited she can't sleep.

I might have a bead on some meet and greets from the daughter of a family friend. I HATE doing those sort of things and pulling those sort of strings; it feels sleazy, to come out of the woodwork like this. But, well, this friend grew up in the same town, we shared a loved aunt (actually my mom's cousin's wife, but we called her an aunt. She was this friend's actual aunt). So our histories (but not our present lives) are pretty entangled. When she moved out of her house, my mom loaned her my bed. She rode my horse in horse shows. I shouldn't feel so guilty, but I do. I will do this for M, though.

I know that just going to the concert will make M's year. If she gets to MEET him, wow! But I haven't mentioned it to her and I didn't really plan much in advance. If it happens, it happens. But I know how I get sick to my stomach and anxious when I get meet and greets to meet my favorite band. (Queensryche, if you don't know already.) And I know how I'm crushed if they don't come through. So I'm just letting the fates decide.

I'm a bit excited and a bit terrified.

First of all, strange city. Strange vehicle because I have her mini-van, not my car. I have driving issues anyway and I didn't really start driving until my mid 20s.

The reason I have the mini-van is so she can have her electric wheelchair.

She can walk without it. But it's to sort of mark her as someone with a disability, someone who should not be pushed around in the scramble for seats, someone who can't handle many steps to her seat (I get vertigo in the balcony seats in some places. She has vertigo and off as a medical condition. Yeah, she doesn't need to be in bleachers.) It also, as I've mentioned before, determines that she gets crappy seats. The front row seats are out if you can't take the pushing and shoving that comes with a concert. But without the wheelchair, no protection.

Tonight, hotel trauma is getting to me. She wanted an indoor pool so she could swim. I spent hours trying to find a place on the internet that didn't land us in a part of town where I felt unsafe. It had to be easy to get to, both from the interstate we're coming in on and the concert venue. It had to have an accessible bathroom because after a few falls, bathtubs give her panic attacks. (I mean, really, who wouldn't panic after being trapped in your own bathtub?) I looked at pictures of the pools and tried to decide which ones had big wide steps and which ones had those flimsy backwards ladders. I tried to make this awesome.

What I ended up with was nada. Couldn't find a thing. Everything started selling out.

So I called expedia. They couldn't get me an accessible room, but we did get one in a hotel where everything is accessible by elevator, no steps. The bathtub might be traumatic and the swimming thing isn't going to happen. It is 5 miles past the venue and involves interstate changes. But we will live.

Accessible isn't having one room in the hotel. It's having choices of which hotel, of deciding that you might want to swim there as well. I haven't realized how much M's choices are limited. And when she takes the chair, they are limited even more.

So, yeah, I'll play the "please come be nice and meet the poor disabled girl" card at this concert. It's only now that I'm realizing what a heroic effort it takes for her to even GET to the concert -- and she is only mildly cognitively and physically impaired. If her life can give her the legally-blind card, the life-threatening seizures card, the removal of half her brain card, the the hand she can't move, tremors in the other, the vertigo, the schools that didn't teach her, the services that don't work for her, the drive to be independent but the lack of support to make it happen, then goddammit, I'm playing the disability card for her on this one. I don't care what damage I'm doing "the cause."

She deserves this concert.
She deserves a meet and greet.

She deserves front row and blowing kisses to Kenny and to be able to walk without fear of falling and to be able to drive her own van and to live independently. But since I can't give her any of those, I hope that friend of the family can give her the meet and greet. At the least, I can let her be 21 and hysterically happy in an audience of 20,000 worshiping at the feet of her chosen rock (well, country) star.

I hope, some day, that she learns happiness (and concerts and independence) aren't anyone's to give her, but hers to take. But for now, I just want us to have fun.

And me not to wreck her mini-van.

Sunday, May 13, 2007

More Ashley X and selective abortions

How can anyone make a decision regarding the welfare of another human being if they live in a climate prejudiced against that human being's very existence?

If Ashley (see summary, next entry)is considered abnormal, a terrible accident of fate, then it is okay to do what you want to her because, obviously, she doesn't care, and she's a special case. Not a real human being with dignity. One of the ethicists in the case, quoted from the parent's own blog (http://ashleytreatment.spaces.live.com/blog/), calls her grotesque:

[...] as George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies, alludes to in a related article4: “If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity. Nor do I believe this is somehow demeaning or undignified to humanity in general; the treatments will endow her with a body that more closely matches her cognitive state – both in terms of her physical size and bodily functioning. The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.”

He believes that adult woman with developmental disabilities are grotesque.

I believe smug male ethicists are grotesque.

Appearance is at the heart of this case, despite what they argue. They say her breasts were removed for "comfort" as she will not reproduce and will not need them. Her uterus was not needed, so they simply removed it. That argument doesn't hold water. Ashley will not ever use her arms or legs. Why not amputate? She will have less body mass for bed sores. (Remember that body mass and bed sores was a key argument). If her hair bothers her, why not shave her head?

Oh yeah -- removal of arms and legs might render her "grotesque."

It's so much easier to be cute and young and disabled. That makes great posters. To be the adult with the developmental disability is a bit less cute and therefore a bit harder to accept.

On some days, I can almost understand the attenuation, but then I think of the breast removal and hysterectomy and I get sad and I understand how this isn't about keeping her small, but it's about making her a child forever because THEY CAN. What kind of place is this where parents can decide to do this to a six year old?

It's a world where we think it's easier to maim the child than to fight for her right to good care.

This reminds me of another important article I've read:
http://www.nytimes.com/2007/05/09/us/09down.html?ex=1179374400&en=8557232a0e45d958&ei=5070&emc=eta1
Prenatal Test Puts Down Syndrome in Hard Focus

This article describes how parents of children with Down Syndrome and people with Down Syndrome get together to educate parents, genetic counselors, and doctors about their lives.

I'm pro-choice.
But, well, what is discrimination? I define it as having your fate decided by a single characteristic you possess. To abort a pregnancy based simply on a disability is the worst kind of discrimination.

If you have a baby with Down Syndrome, you have a baby. He/She has a name, is a person, has ten fingers and toes and an extra chromosome. It's a difficult shock, but one that can be lived with. Baby with disability. Person with disability, just like person with blue eyes, red hair, etc.

But if you are pregnant and find out about Down Syndrome, Angelman Syndrome, Spinal Bifida, or anything else, what do you have? Not a baby. Not a person yet. Just a terrifying disability in a culture that thinks disability is so terrible that parents can alter their children to make it more palatable. To have a child with a disability is still somehow shameful. Didn't you know? Couldn't you abort?

My life would be so much more dim without all the wonderful people with Down Syndrome, Angelman Syndrome, and other developmental disabilities that I know. The world would be a much more dim place. It's not that I wish developmental disabilities on anyone, and if you've ever seen a child screaming in frustration because he or she can't speak, then you know what it means to watch someone suffer and to be helpless to ease that suffering.

But I do try to ease that suffering. I work on communication devices, I help people try to understand. No, it's not fair that child should suffer more than someone else. But it's not fair that a star athlete breaks a bone and is no longer getting a scholarship, for instance, or that someone's daughter struggles in high school while a classmate goes to Harvard. Life isn't fair. Check Spelling

This is why I like the idea in this article, that people with Down Syndrome and their parents are affirming that their lives are more difficult, but they ultimately have joy and value. The medical profession, especially the genetic counselors and OB/GYNs, NEED to understand this if they are to provide accurate information to women in crisis.

Again, I'm pro-choice. But when the whole culture denies that a child with a developmental disability has a right to exist, that isn't a fair choice. I can only continue to say we need to change the culture, show the rest of the culture that people with developmental disabilities have valuable lives. That's the only way we will keep the Ashleys from being shrunken and maimed and keep the population of people with Down Syndrome from facing extinction.

Saturday, May 12, 2007

Ashley X

http://www.cnn.com/2007/HEALTH/05/08/ashley.ruling/index.html?eref=rss_topstories

Report: 'Pillow angel' surgery broke law


Well, duh.
If doing medically unnecessary surgery to a child with a complicated medical history isn't illegal, it should be. (In a nutshell: Ashley X was 6 years old. She had static encephalopathy -- unchanging brain damage. She was treated with massive hormone doses to "attenuate" or stop her growth. She also received a complete hysterectomy and removal of breast tissue).

The confusing part is that the parents and ethicists give conflicting views about why this was done. When speaking of the attenuation, they cite that it isn't for convenience, but for her own comfort, yet they also say now it will be easier to include her in more activities and she can be cared for at home. (So yes, they might actually believe she will be more comfortable, but the reasons they cite are all convenience reasons -- it will be easier.) The discomforts she might face when growing older, say bed sores, etc are not medically pressing at this time. I look at it as cutting off your feet to avoid death by infected splinters that MIGHT happen. (Okay, infected bedsores are more likely to kill than an infected splinter, but still -- a radical action is not justified by the future risk).

The parents say they were worried about menstruation. Well, yeah. Every parent of every girl with developmental disabilities worries about that. And you know what? Most of the time, they get through it fine. If they don't, there are birth control pills to control it. That makes much more sense than major surgery on a SIX YEAR OLD who won't menstruate for years.

Removal of the breast buds to spare her from developing "uncomfortable" breasts? Uh-huh. It's not just they are keeping her small by attenuation, which is unethical, but all together an understandable desire. Removal of her uterus and her breasts, along with attenuation, add up to a disturbing conclusion: they are keeping this girl a child forever.

There are several really disturbing things here:
1) unless they made themselves immortal, they will still someday have to think about who will care for Ashley when they are gone. And Ashley's needs will be more complex and more exceptional because she will be the size of a 6 year old when she's 30.

2) I don't buy the argument that she's really a 3 month old in a 6 year old's body which makes this all somehow okay. No professional should as well. I have met so many people with so many different kinds of developmental disabilities. They ALL grow and change and mature, even the most severely impaired. Cognitive age only means she's hit milestones that a 3 month old hits -- a TYPICAL 3 month old, with use of his/her voice and limbs. To judge Ashley's against that scale is helpful by way of comparison, but doesn't really show much about her --it's like judging someone with no legs on how fast they can run. No one KNOWS for sure who is "in" there. She is not a 3 month old. She is a 9? 10? year old with severe developmental disabilities. Big big difference. Unless a person understands this, he/she should not be allowed to make decisions for someone with a disability.

And why did they give up on her at 6 years old? I know of kids that learn to walk at 14 years old.

Her cognitive age does NOT make this okay. Even if you disagree with me, even if you think she's really an infant, it is still NOT OKAY to do this.

3) Ashley is not so far out of the class of human being that we shudder and say "We can't judge." Although Ashley's care is extraordinary, society DOES have the right to judge how we treat children. That's why there are child abuse laws. If you couldn't get away with it on a typical child, you shouldn't do it to a child with a disability -- or at least without many procedural safeguards.

4) They say that breasts and secondary sexual characteristics would "sexualize" her to caregivers. In fact, one of the ethicists said "gone is the risk of sexual abuse." Um... excuse me?
This shows an ignorance of why sexual abuse happens. And it ignores the fact that sexual abuse happens to children who have no secondary sex characteristics yet and is most likely to be perpetrated by people in someone's inner circle. Caregiver abuse happens more when the person with the disability is not out in the community, does not have a circle of supports including friends, family, and non-paid supports along with maybe paid staff to help balance the amount of power and control that one person has over someone else's life. Also, more people = more people to notice if something's wrong.

5) I have met so many people through my work-- other people's kids who I love and care about as if they were my own. More importantly, people I consider friends. They are assuming that people won't see what Ashley has to offer as far as a relationship with a caregiver or friend is concerned. They assume only they could love Ashley. That's selling their daughter short.


Who can blame the parents? They are afraid, they worry about the future. The support systems in the U.S. are not great. I wasn't angry with them until they started advocating it for other children.

But the so-called doctors and so-called ethicists who gave permission to do this to a child should have their licenses "attenuated."

Ashley is not so far out of the realm of human that we can say you can do things to her body that you wouldn't dream of doing to a typical child's body. She is a human being. Not a doll. Not a pillow angel.

To wear a blue hat

Today was the Little Rock Arthritis Walk. I was surprised at how small the event was, but it was a great event. I got my blue hat, the hat that people with arthritis or a related disease wear.

No one knows what I've gone through for the blue hat this year.

It seemed a small consolation for the job I love, for the frustration at respite when I couldn't do my job, for watching R.'s seizure, for learning how to stick a needle in my stomach, for spending the night on the floor of an Irish bathroom or a few hours on the more public floor of the Jonathan Swift's bathroom as we crossed the Irish Sea. (For those of you who don't know the story, I started experiencing extreme nausea and motion sickness from methotrexate while in Ireland).

Had things been a bit different, I would have been at a different walk, much bigger, wearing a different hat -- my mortar board. But this was good, in a sobering way for me. Despite my best efforts, I'm going to have this and it's going to bug me sometimes. I can't will it away. It's not a personal failure when it flares. It's not me letting the darkness take hold, as my ex-boss and (ex?) friend said.

When I did the marathon, it was with absolute triumph -- look! RA doesn't stop me! HAH! This walk was with resignation. I can do a mile. I can do three. But I don't want to do three right now.

It was a positive experience, though, and it left me feeling sort of strange. I walked with a 16 year old girl and her family. She too had a bout with invisible mono that never showed up on any tests. A methotrexate thing? She also jabs herself in the stomach. She also referred to herself as "lazy" and it shocked me because she seemed to be very confident. That I'm not sick and really just lazy (or as my boss decided, slipping into darkness) is my biggest fear.

I worked a golf tournament yesterday for UCP. My car has Autism Awareness and Angelman Awareness magnets. Why am I so adamant about advocating for other people, but I couldn't figure out what I needed enough to save my job?

It's time for me to care about rheumatoid as a way of caring about myself. It's time to do some advocacy work for Arthritis as well. I spoke to the people running the Arthritis Foundation about trying to get a branch opened here in Northwest Arkansas. I would LOVE that. I need a job with flexibility but one that will be bigger than me just making money. I need a cause is how my math teacher once put it. And I agree. I am trying to fight the urge to email my resume to the people I met.

But, before I need a cause, I need health insurance. And that means getting enough rest so I can work next week. Last week was an eye opener. Two hours of work a day plus and hour and one half of tutoring and I was beat. And I still have to take sick leave to keep my insurance.

It's time for me to admit that I can't work the way I used to. I can't take a time punching job. Yet I start one next week out of desperation. What happens if I drop a preschooler?

I have to start shopping for a desk job. Period.

Wednesday, May 9, 2007

To be certified...

Oh, the things I could do with the right certifications.
I could be employed right now, for one.

But I have a learned mistrust of people who go get the certifications and only then work in their fields. It seems the experience ought to at least come concurrently with the education -- not education, then experience. I've met people with no love and no desire for their fields with all the right credentials (and enough student loan debt that they can't do anything else) and I've met wonderful, gifted people who never spent a day in class.

It's strange. All of my life, I have been told that education is the key to doing anything you want. I have believed it. I got through college on a full-scholarship, too ignorant to major in something "sensible." What did I know about college? I majored in English and Philosophy and minored in journalism.

Then, while looking to pay the bills until I could get my MFA and write the Great American Novel (tm), I took a job. I was a para, short for paraprofessional, fancy wording for teachers' aide. The jobs started at $6000 for a high school graduate and something like $9000 for me, with my two degrees. Ooohhh.... hold me back. Because I couldn't take the job and afford an apartment, they gave me slightly more... I forget what.

Don't let the lack of title or money fool you. By the end of my first few months, I was a teacher. I knew my student well, better than anyone, could brainstorm ideas on what was appropriate to be trying to teach her. Most of the things the special ed teachers wanted me to do with her were outside of what she could meaningfully do, so I would be forced to guide her through it. When left alone, we could come up with pretty successful learning strategies. I worked my butt off. But I was still, on paper, an aide.

It didn't bother me.
I was young. What was money when you had a job you loved and a girl learning in leaps in bounds?
Ditto for this last job. Who needs money? I was learning so much, teaching so much. The way it ended made me realize that despite how hard I work, what I learn and what I know, I will never be more than my job title. I've had more experience implementing and designing augmentative communication than every single graduate of the speech pathology program (except S's mom, and I have a lot of technical experience she doesn't have). If I had a dollar for every communication book I've made through the years, I would be rich. But I will never be allowed to practice speech. I have developed worksheets, a whole reading and writing curriculum, visual supports, etc for several severely disabled individuals. Yet I will never be allowed to teach special ed. Plus, I could spend three years getting my SLP, but take only two classes in what I want to do.


I'm just starting to become slightly bitter about this. Maybe all those sweet 22 year olds that come student teach in the special ed classes should have to do a year as a para/aide instead of student teaching. Make being waiver staff or working some other low power/low paying job a prerequisite for anyone working with people with developmental disabilities. Being an intern or a clinical first year isn't the same thing. Everyone knows you will own them with money and power and the ability to make decision for them next year. You have the power in your pocket; you just can't use it yet. Make them have to do this their first year of school, when that power is too far off to be wielded. If you still want to be an OT after changing diapers of people bigger than you are, you get to be an OT. And you will never ever ever look at the waiver staff or the personal care aide like she's nothing because you will remember what it's like,


The certification process creates a huge barrier between the people who actually implement therapies and those who are certified to prescribe them. And it's working professionals out a job. SLPS, OTs, PTs are in short supply. More and more places rely on therapy assistants, who are supposed to be simply implementing, not providing services, but I know how that goes. Then schools start to think about how expensive it is to hire an SLP, so maybe they should just hire more implementers. But the low pay and rigorous class/internship schedules make sure that virtually none of the low paid aides, implementers, paras, assistants, etc., can go get their degrees.

I have often thought about being independently certified through various programs. PECS (pyramid education consultants) has a certification process so that I can be trained to teach PECS. Handwriting Without Tears has one. So does the Lovaas center, floortime, and every other program in the world. I could spend a year and get certified in all of these protocol, which would reflect my experience much more accurately. But I'm hesitant. First, I like all of these programs, but I want to be able to pick and choose how to apply them. For instance, PECS starts with teaching a child to request something. That works for some kids, but I know others who would have much more success with commenting first.

Second: the certification thing is a huge moneymaker. Okay, so you came up with something cool, like how to get kids to write better through sensory experiences. Awesome. So I need to spend $200, plus hotel and travel expenses, for three conferences, and then I get the certification. I just can't make myself pay that. It's a racket.

I am seriously considering getting certified in assistive technology because no one has gotten a hold of that field and made the specific professional degree mandatory. I can test for the certification using documented work hours in assistive tech.

I'm considering it.

But it's like all of the pee tests and fingerprinting I have to go through to get a job with kids anymore. Sure, all this is good. But it does not substitute one little bit for adequate supervision. Not an iota. Certification is nice, but it really doesn't show that you give a damn. You won't find that out until later, when you wake up at 5 am and remember "S. doesn't have May programmed into his communication device yet. How can he tell the date at school if I'm fired and no one else knows how to put May into his device?" And no one really thinks it's important, because, after all, you're just waiver staff. Anyone can do what you do.

Monday, May 7, 2007

A failure to advocate

I am terrible at telling people what I need.

I've been working full time as S's in-home staff person for a year. I was part-time the year before that. His mom was one of my best friends. I love S. and his little sister like they were my kids...

but...

For the first time really since high school, I have run smack into a flare. But it's been a slow flare, a creeping up on me flare. So I don't trust that I'm really having issues. Maybe I just need more sleep...

I don't know how to say "I can't do this." At my job with S., I wanted to believe I could do it. When I couldn't, when I looked at the amount of pain or fatigue I was dealing with, and decided that I wasn't able to do this without help, I would put out a call over the email list to all of S's caregivers and ask for help. Inevitably, there wouldn't be any, so I would go into work. I would try my best to cover it up, say I was fine, and I really believed that I was. So yes, I guess I am the girl who cried wolf. Except maybe in my case, I see the wolf, fight it off, and make everyone I believe I never needed the help anyway.

It blew up Sunday night between S's mom -- one of my best friends -- and me. I called in sick. She had a final. She didn't believe me. I decided it was time to dig my heels in for once and declare that I needed help. But, well... it got really ugly.

I am lucky. I've been able to say, "My disability does not interfere with my job." But it did. And my inability to self-advocate, along with her inability to take me seriously, has cost me this job and friends. This is heartbreaking. And I am bitter and hurt. I loved all of them, but especially him.

Here's how most people feel about invisible disabilities, I've come to believe. She revealed as much to me during our e-fight:

Honestly, I think your body is manufacturing a major depression.

Thank you doctor. My body is attacking my joints, which makes me sore and gives me flu like symptoms.


It also confirms my worst fears -- that people don't see me as someone with a disability who is trying very hard. That people think I could just get better if I stopped paying attention to it, if I just shut up and played along. And because of that fear, I exaggerate certain manifestations of my disability, I know I do, just so I don't have to explain. I lie. I say I'm sick when I really mean I'm absolutely dead tired and can't handle it safely. (I drove through a red light the other day. It's THAT hazardous). I say I'm tired when I'm really in pain. I limp when getting out of my car if it's in a disabled spot, even if I don't really have to limp, so people won't judge me.

"Your body is manufacturing a major depression."

No. But the strain of constantly wondering if I'm lazy or worthless is a major downer.

I should be glad that I worked in a house for two years, in close, really tense situations with a teenager with very severe autism and profound needs (we used to say "severely autistic and profoundly wonderful") and this was our first fight.

Limits.
Boundaries.
They are there for a reason in a job. Waiver staff is so difficult because you're supposed to love like family and obey like a servant. We had a good run and I assume, that one day, our friendship will recover.

But I miss that boy and his sister so much.

(note -- this post was edited 11/29/07 to remove some of the gory "he said / she said" details. Hindisght is 20/20 I guess so I tried not to edit too much.)

Sunday, May 6, 2007

It's not over

http://www.nwaonline.net/articles/2007/05/03/news/050407bznorman.txt

Arkansas State Trooper Larry Norman pleads guilty to negligent homicide.

For those of you who don't know the story, you might want to check out the background info.
Here's what I know:
On April 7th, 2006, police stopped a young man walking down the side of highway 412. they thought he might be an escapee from a Michigan boot camp, who was considered armed and dangerous. In fact, when they called out the name of the suspect, Adam, the young man turned, making police believe they had the right man. He acted strangely though. When told to lie down, he lay on his back. He didn't respond as ordered to many things. He kept his hands in his pockets.

A state trooper, from what I can understand, who was to direct traffic around the scene, and was not directly involved in the arrest of the young man, saw the boy reach for his pocket, although others think he might have been trying simply to follow orders to roll over. He shot and killed the man.

I have a friend who has seen the dashboard video of the incident. (I realize "a friend" is not a reliable source, but he does confirm what I've manged to gather from newspaper reports). He points out that the trooper was listening to his AM/FM radio too loudly to hear radio traffic on the police radio that suggested this man might not be the suspect. Regardless, the trooper's orders were to direct traffic. The local officers at the scene were responsible for the apprehension of the suspect. I might add that perhaps local officers, if they had better community contacts, might have recognized the young man.

If this man had been the suspect, I would call this negligent homicide. I have no reason to believe there was sufficient evidence to shoot this boy, regardless of his identity. But the crime of this young man on highway 412 was one of not responding to police the way they thought he ought to respond. He was developmentally disabled and had cerebral palsy.

The "real" suspect was also shot, later in the day, after macing a police officer. He survived though. The mace was the deadly weapon that Adam Lunsford had.

A young man, described by family and friends as "gentle" with a well-documented habit of putting his hands in his pocket when nervous, was dead. Erin Hamley was 21. He had recently shaved his head to look like his brother in the military.

A grand jury decided on negligent homicide, the lesser of the charges given to them to consider. Personally, I believe that manslaughter, which according to the Morning News, would have to prove a certain amount of recklessness, would have been more appropriate.

Even if this young man had been Adam, the shooting was negligent. Because Mr. Norman deliberately disregarded his orders, broke cover, and violated radio policy, therefore not getting all the facts needed for an informed decision, I argue he was not just negligent, but reckless.

Still, though, I don't want anyone to go to jail forever for this. The trooper has retired, and from what I can understand, is devastated beyond what a 1 year prison sentence, the maximum he can get, will do to him. But I want people to understand.

There needs to be better training in police departments for dealing with people who are developmentally disabled. I don't think "developmentally disabled" ever crosses the radar of most officers when they encounter someone not acting appropriately. And quite honestly, I understand-- they are trying to assess whether or not the suspect has a gun, is high, deranged, or otherwise a threat. But like the general public, they can be ignorant of the fact that people with developmental disabilities live and work in our communities, and therefore didn't consider that as a possibility for Erin's behavior. But I think of the confusion of this young man, how he must have had no idea what was going on, how scared he must have been, and I want to cry.

This should be a call to action for the disability community and law enforcement to try to understand each other and work together. Two lives were destroyed by Mr. Norman's actions and the underlying ignorance about people with developmental disabilities. It's time to do something.

What to do is another question. But we need to discuss the possibilities, knowing that the disussion itself might help prevent the next tragedy.

Rj Cooper, keyboard stickers and Adamlab

So, both Jessie and S. show some interest in typing, but have trouble finding keys on the keyboard. I can't afford an adaptive keyboard right now.

http://www.hooleon.com/menu-vision.htm

For less then $20, I got stickers to cover an existing keyboard. It's working -- not great, but well enough for both users to have success.

I'm using Spell-A-Word by R.J. Cooper. It's awesome because it's errorless -- the word pops up on the screen and if a users hits the wrong key, nothing happens. It's a great typing tutor program.

I will someday buy his big keys keyboard. I saw it in action at a Road Trip and it was awesome.

S. has been waiting for two years for his Magic Dynavox. I imagine it will be awesome. But meanwhile, he needs to communicate. I got him a Blackhawk off of Ebay for $10 a year and 1/2 ago. He loved it. (the folks from Adamlab were great to help me get it up and running!) Somehow it was lost. He was devastated and would not go back to using his PECS -- he even destroyed them. He's been using PECS since he was a toddler.

While waiting for the dynavox funding, in desperation, I bought a pocket pc off of ebay and then purchased R.J.'s Point To Pictures Mobile for it. The result is that he has a functional communication device that he loves at an out-of-pocket price. I've had to buy a new Pocket PC and honestly, if I had to do it again, I wouldn't mess with the used pocket PC's and just buy the Auggie straight from R.J. When you add it all up, there is virtually _no_ markup on the hardware. But I could convince someone to reimburse me for a few hundred at a time (first the program, then the pocket pc, then the case, then Remind Me, another awesome program). So I frankenstiened it.

Meanwhile, S. still waits for his dynavox. I am excited about it mostly because the others in his life will be more familiar with it and more comfortable. That;'s the benefit of a monopoly, I guess. I also know that the keys will big enough that he can work on typing. But honestly, I don't think he'll do much with it that he can't already do on his mini-auggie.

Another hint -- what made him love his mini-auggie is putting songs on it. S. is addicted to music

I need to take his device some weekend and totally reorganize it. I've realized that the way I have it set up makes sense to me, but not to him.

Will explain more when hands stop hurting. :)

Friday, May 4, 2007

My how-to of the week

I have discovered printing/tutoring nirvana: pages from this Kumon workbook (or the flashcards) and wikki stix.



Many of the kids I work with seem to have the motor skills necessary for writing. They can make lines, circles, etc. Why not letters? They make letter-like shapes?



I noticed that Jessie did not really know where to start and stop her letters. I tried the Handwriting Without Tears big wooden pieces of letters. That seemed to be too abstract -- the pieces making letters on the table didn't translate to how to know how to start and stop the letters with a pencil in the hand. I did learn that Jessie is very confused about lines and how to follow them on a paper. So I will stick with the Handwriting Without Tears stuff for later, once we've really caught on to what letters are and what they do. This is also why letter stencils, even good ones, are difficult right now -- each letter is in total isolation. I think that letters in isolation don't mean much to her. She can pick them out and sign them, but we're following a very word oriented approach. Words mean something to her. Grandma and Mom and Dad -- those are things in her world. "C's and "D"s, especially since she is mostly non-verbal, don't mean much. So we're working on reading first. I'm working mostly out of the book Teaching Reading to Children With Down Syndrome by Patricia Logan Olwlein.



S., too. when he writes his name with hand over hand prompting, he doesn't want to pick up his pencil. A "T" might take a whole page. Jessie can trace with some help, but her Js might start at the top, go down like a J, but then she'll bring her pencil back up to the top, making some sort of backwards "D" like letter. I bought the Kumon workbook because they also take a motor skills based idea of handwriting, and their tracing models are a bit more complete than the The Handwriting Without Tears -- they are aimed at a younger crowd.



Even though the Kumon workbooks had a system of cueing starts and stops by having the child put a pencil on the dot and trace to a star, that wasn't enough to keep Jessie from making a C into a circle, or linking all the Ls on a page.



At one time, I when I was a teacher's aide for a girl with Angelman Syndrome, I would take pictures that she was to color and outline them in school glue so that she could feel the edges of where she was coloring. Then I graduated to glitter glue so that she could see it as well. But that took a day or so to dry and more fine motor than I possessed at times.



While trying to figure out how to help Jessie write, I made those same tactile and visual guides with wikki stix. Here's a project she's doing for mothers' day:

First: I make a copy of the workbook page with the letter I want on it. Here, I've also added stickers to show her where to start and stop. (I was out of star stickers).

letter M

Then I outline the first stroke in Wikki Stix. I leave the pencil entry point open when I can and make sure that there is a barrier on the place where the first stroke is to stop.

letter M in wikki stix outline

Then I outline the next stroke in a different color.

M completely outlined with Wikki Stix


I used the smaller models at the back of the book, copied them, and outlined the letters we'd need for the message.lots of letters outlined

Link to Kumon Publishing North America.

I composed a model message on other paper.
written message of I love mom
For our lesson, we spelled out the words with the cut apart letter tiles to match the model. Here is how it looked:



completed mothers day card

We have since used a pencil to trace in the letters and I've removed the wikki stix. I will try to get a scan of it and also a scan of letters we've traced without the wikki stix. The difference is staggering.

There are some that ask if this is a useful skill -- she's not going to have someone wikki-stikking everything she writes for the rest of her life. But I think this is useful for several ways -- it gives her practice at copying letters and making them meaningful. Hopefully, we can fade the prompts just like we do with typically developing children. She has the motor skills to make the letters without the prompts -- her doodles show she is capable of very controlled detailed pencil work. This will train her hand and eye to work together and let her feel how letters work.

Even if she never writes, I truly believe she is a reader and can learn to type. Anything I do to help her understand and participate in written language will help her form the concept that writing is communicating.

She holds up books and pretends to read. She is starting to understand. I just need to keep her interested, and that's the difficult part.

Caution: wikki stix look a lot like candy. S thinks they're good to eat. They are non-toxic (I think) but they can't be good for you. They also are easy to grind into the carpet, so pick them up quickly. Oh, cut them with scissors.

Thursday, May 3, 2007

RA bleh

I've been sidelined by my own disability issues lately. I'm struggling with the worst flare in my recent history -- I think since I've had rheumatoid. I had a horrible time at a respite weekend, where I could not push a wheelchair up a hill, made the girl walk instead (she IS mobile for short distances) and she had a seizure. This is the first time that my disability has interfered with my ability to help others. I mean, I've been tired before, skipped work, called in sick, needed help to get S.'s bottle of abilify open. (I've run down the street after his mom's car in the morning, waving the bottle). But I feel very deep down that I put her in danger, even though my boss has told me that I didn't. It's sobering. I've always believed that where ever I go in the world, there will caregiving jobs for me. I'm starting to realize that I may not be able to be a caregiver indefinitely.

There's a lot to think about lately -- I want to post some really exciting things happening on the tutoring front. Both Jessie, the teenager I tutor, and S., the teenager with severe autism for whom I am waiver staff, have had success at a few adaptive writing techniques I've stumbled on. I will post pictures and samples soon.

Meanwhile, I'm looking into switching to biologic agents, my neuro wants me on Zyrem, and I've checked out scooters in case I need one. I'm also confronting my stereotypes because I don't want to look disabled. Isn't that crazy? After all of this, I still want to keep my "us and them" distinction.

Anyway, I would like this for getting around inside places and campus, because it's great combo of a standing scooter, like a Segway, put with a place to rest my butt: http://evrider.com/stand-n-ride-too.htm
And this just because it's totally bad to the bone: http://evrider.com/sportster.htm

It's so good to have the Durable Medical Equipment covered on my insurance.

It's so good to have insurance. Let's hope I can keep working to keep it. I'm starting to enter sick world or disability world, where the energy to keep the obligations that come with being sick and/or disabled is equal to the energy needed to deal with the illness or disability. I have a neurologist, a rheumatologist, and personal trainer, a physical therapist. I have a zillon drugs to swallow or inject, some with food, some without, some in the mornings, some at night, some once a week. The paperwork and management of being sick can overshadow the sickness itself.

At one time, I ran/walked a marathon in support of the Arthritis Foundation.
Now I'm doing a 1 mile walk, and I think that at my current state, that might be an equal accomplishment.
http://littlerockarthritiswalk.kintera.org/lesley

I'm going to take my sore self to bed.
Tomorrow, once I get moving and take the prednisone I once begged my doctor not to put me on again, I will be bouncing around the house, full of energy, eating anything that moves. The crash seems to come about 7 pm. I love to hate prednisone, but it's saving my life right now. And killing my stomach. And mysteriously shrinking all my clothes. And making everyone around me totally unreasonable and hard to get along with.