Sunday, December 13, 2009

Still thinking about it all...

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:

Verdict: probably safe, don't really know. Will probably stop 30 days before.
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.

Saturday, November 14, 2009


Line to get H1N1 shot yesterday

Saturday, October 24, 2009

Antimalarial Drug Prevents Diabetes In Arthritis Patients, Study Suggests

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.

Thursday, October 8, 2009

More RA and pregnancy

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.

Sunday, October 4, 2009

RA and pregnancy

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.

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

Saturday, September 5, 2009

My grandma's social cognition and pillow theft

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.

Friday, July 24, 2009

What? Hearing loss in people with RA.


Like I needed something else to worry about.

What? Huh?

Saturday, July 18, 2009

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

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.

Monday, July 13, 2009

Lupus? And Michael Jackson

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.

Saturday, May 30, 2009

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

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:

  1. 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. )

  2. 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.

  3. 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.

Friday, March 20, 2009

Obama would get his butt kicked

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?

Wednesday, March 11, 2009

Another case of state school abuse

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)
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.

Thursday, February 5, 2009

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

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

Friday, January 30, 2009

The Enbrel Diaries, Part I

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.

Sunday, January 4, 2009

Narrative medicine

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

From the New England Journal of Medicine:

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

By the same author:

BMJ : 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.


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

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.