Sunday, June 17, 2007

In a house on Oak Street

In a house on Oak Street...Near the town I grew up in, J.C. sits in her recliner. The T.V. runs in the background, but she pays little attention. She listens to headphones her grandmother bought her, or to the mp3 player I bought her. She flips through the scrapbook her grandmother made her, pointing at friends, cousins, family members. She covers the favorites with stickers. She sometimes plays games on the computer I gave her, but since no one else knows how to get into her games, when she clicks on something she isn't supposed to, as she inevitably does, no one can fix it.

She's 18. She loves to be out and about. At the movies, swimming, pizza hut.
But she rarely gets out unless its the every other weekend she's at her grandmother's. Her group home is staffed with one person for her and her roommate. It's a struggle to take either one into town, but together, it's impossible, and actually forbidden by the administration for safety reasons. So she sits. And she picks up the suitcase that means it's time to go to grandma's and won't put it away. She goes to summer school, but they called and asked what they should do with her.

I have a spare room.
And a guilty conscience. I could take care of her. I could move home. I've had kids that I've cared for and kids that I lost touch with, but none haunt me like J.C. I don't have to fail her. I don't have to live 5 hours away. I could move home.

I spend so much time and energy getting away from that town. The thought of living there makes my skin crawl.

I have a husband. He doesn't want to live there.

We could live close enough I could help out. But I don't want to help out. I've spent my life with this girl helping out, afraid to step on toes, to say the wrong thing, to offend anyone. I want to rearrange her life, make it so it works, make it so she has a life that involves friends and parties and football games in the fall. I want prom and ice cream and pizza and swimming for her. I want cute boys and an adaptive bike and a job she loves. I want graduation and prom.

I'm powerless. Who do I talk to about this? How do I approach people who are doing the best for their child/grandchild and say "I don't think it's enough."?

I have visions of visiting in 5 years, 10 years, 20, 30. And she will still be in hr chair, looking at pictures of people in a life she once had. And my powerlessness overwhelms me.

Monday, June 11, 2007

Good to know...

Lending a little weight to my idea that the predinsone will kill me before the remicade does:

TNF Blockers for Rheumatoid Arthritis - Infection Risk Assessed in Older Patients

"Researchers looked for serious bacterial infections that required hospitalization. According to study results published in the June 2007 issue of Arthritis and Rheumatism, no increased risk of serious bacterial infections was found among users of TNF blockers compared with methotrexate users. Glucocorticoid use, however, showed a dose-dependent increase in serious bacterial infections."

Of course, this doesn't account for strange random stuff like fungal infections and sitting next to a lawyer with a deadly strand of TB on a cross Atlantic flight. Still, it's strangely reassuring to know the medicine I've been on and off of for most of my life is more dangerous than the big ol' dose of mouse protein I got put in my arm today.

I blogged while getting IVed, but the post was eaten somewhere in the internets.
Probably for the best.

Second IV down.

Haven't spontaneously combusted yet.

Conductive Education

So, the subject of Conductive Education has come up in several conversations lately.
I am an aide in our local conductive education center. When my last job started feeling shaky, I called Conductive Ed and asked if they'd hire me for the summer. They remembered me from when I used to pick up a student there, so they said sure. Of course, that was before the flare hit, when I had confidence in my ability to do the physical stuff involved, and I thought I'd only work with S. part time and Cond. Ed part time.

So, today was a good day. I saw a boy I used to be waiver staff for but haven't seen in a year. I was so happy to see him that I wanted to cry. It's so hard sometimes to totally love kids and then have nothing to do with them. But I'm proud of the job I did with that family -- I came in, I was their first staff, I let them know that it was okay to have staff and other people looking after their child, and then I moved on when I took the S. job full time.

To see him again though was amazing. And I got to work with him today.

So what is conductive education?

In a nutshell, Conductive Education was developed in Hungary in the 1940s for children with motor disorders -- mostly cerebral palsy. Imagine taking a preschool classroom, having each child have his or her own aide. It's highly structured, incorporating stretching, motor activities, cognitive activities, activities of of daily living, songs, etc. Everything is focused on helping the child become self-sufficient, but not in the traditional way. Alot of the usual adaptive equipment (Standers, gait trainers, wheelchairs, augmentative devices, pecs, etc) just aren't there. Instead, when it's time to walk out at the end of the day, the child might push a wooden chair while an aide stands behind him or her and moves each leg accordingly.


I feel the same way about it that I feel about A.B.A. or any other intense therapy. It works for some kids, but I'm a bit uncomfortable with it. It's not child-centered. It's the opposite of child-centered. It's program-centered. I've heard it explained as that Conductive Ed developed in response to Nazism, so the philosophy is anti-special equipment. Besides the helmets and the walkers on the wall, there's not much equipment that would be out of place in a 1940s gym. The theory is that if "they" are coming after disabled people, then if you raid this place, there will be no disabled people here. No one in wheelchairs, no one that stands out.

Also, according to some sources, the plinths and other equipment are modeled after concentration camp beds -- a "constructive use of pain" according to a CBS story. YIKES!

There's not a lot of great evidence for or against conductive education. UCP concludes that it's at least as effective as traditional therapy. I would think that 5 hours a day of working on physical, occupational, speech, and cognitive needs would have results. And it tends to have good results, just from what I can see. The change in the boy I used to work with with amazing after he went to conductive ed. He moved around a lot more of his own volition.

At what cost though?

I remember a study of children with Down Syndrome that showed babies with D.S. actively manipulated their environments MORE at 6 months than at 9 and still less at 12. That learned helplessness sets in easy. (Note, again, I'll check the source, but since my readership is like nil, I'm not too worried about my scholarship these days. I will check to make sure I got this right though).

I think this was from the book Teaching Reading to Children with Down Syndrome. The author recommended errorless teaching to help build up confidence of kids with Down Syndrome, as they've already learned early that they try and fail, so it's better not to try.

Conductive Ed takes the other approach. You might have learned not to try, but we will make you try, or you will fall on your butt. We aren't going to hold you up.

Again, at what cost?

I know of parents who report that therapy is so aversive to their kids that it's set them back. I think that this could break some kids, that the act of being made to do exercises against their will would cause shut down, just as discrete trial after discrete trial would bore and ultimately alienate some kids.

Yet, I've been involved in so many traditional therapy sessions that sort of vaguely make progress. We do something here... okay, kid's had enough. We'll work on walking a bit until kid cries. Okay, we'll work on it again next week. Maybe. If we remember. Conductive education has goals, has a structure that traditional 1-on-1 therapies seem to lack. The idea that everyone in the class is doing their activities together is a huge motivator. When it's time to walk, everyone walks. Some with canes, some on their own, some with one chair, some with two. When it's time to answer questions, some kids are only expected to vocalize ANYTHING that's close and others are expected to spell the words, according to abilities. Conductive education is inclusive education at its best.

There are some of the same limitations that other highly structured activities have. For instance, if I am walking with a kid who I'm not familiar with, and I'm not doing things exactly right, she might just sort of go limp on me, instead of thinking "Wow. She's not holding my shoulder like the other girl does. What can I do to fix it?" It's the bodily equivalent of the confusion of a kid on ABA therapy shows if I ask "Who are you?" instead of "What is your name?"

But, the more advanced kids physically are working on that. There's a lot of prompting one kid with canes ("My sticks" he calls them in the cutest Southern accent you've ever heard) to look and figure out his environment. And he does. I have no doubt that he would not be walking in a traditional therapy system, but here, he does. And is expected to.

So, I'm not against conductive education. I think a lot of traditional educators could come observe on how to really structure a classroom for kids with diverse needs by it. I just don't think it's right for all kids. But how do you tell?

Again, I don't envy the jobs that parents have.

Will I crush my kid's spirit by trying this or will it give him the best chance to walk independently? How do you make that choice? Do you push? Or do you follow the child's lead?

I think if more traditional supports functioned better, it would be a harder choice. But as of now, it's probably one of the only games in town that offers real, tangible results.

A CBS News Report from 2004: http://www.cbsnews.com/stories/2004/02/24/60II/main601944.shtml

Positive Health: http://www.positivehealth.com/permit/Articles/Bodywork/suton47.htm

from UCP.org: (It's interesting to watch UCP's stance change throughout the years).

Conductive Education 2004: Research Status Report, 6/2004

Comparison of Two Alternatives of Intensive Training for Children with Cerebral Palsy, 3/2002

Effect of Physiotherapy on Children with Cerebral Palsy: Report of a Clinical Trial, 4/2001

Fact Sheet for Educators: Conductive Education: Update, 9/1997

Conductive Education:An Overview 9/1995

Sunday, June 10, 2007

Risk

So, if you had a 1% chance of dying from taking an aspirin, would you do it?

1% sounds like a low number, right? Then think of all the aspirin you've taken in your life. I'll bet you've taken 100 aspirin, or advil, or tylenol this year. Suddenly, that 1% doesn't seem so low.

I've been on methotrexate since 1995 without a single adverse event severe enough to send me to the hospital.

When I started methotrexate, the mortality rate I was given was 1%. My guess is that it's considered lower now. There is a significant mortality rate associated with simply having RA anyway. Ten years off my life was the last figure I heard.

So, from what I can gather, Remicade's mortality rate is around 2% to 2.8%. (Disclaimer: This was taken from a blog somewhere that referred to a Stockholm study that I can't find. This might be a wildly inaccurate number. ) Most of the cases I have turned up have been one of four kinds:

1) elderly individuals with histories of congestive heart failure or heart problems dying very suddenly a day or so after treatment

2) elderly individuals with pre-existing lung issues that can be caused by RA, methotrexate, or remicade rapidly declining into death after remicade treatment

3) people with latent TB whose TB becomes active

4) fungal infections, some fatal, striking people mostly in areas of the country where these infections are endemic (but considering that RA patients are now healthy enough to travel more, this could be an issue for me)

I've also found stories of T cell lymphoma developing in people with remicade, although, from what I can gather, these seem to be mostly patients with Crohn's Disease who received another drug called azathioprine.

Great.

I think that my secondary risks are low. I am not elderly, although I feel it some days; I do not have latent TB and because I work with children, I am tested every year and so are all of my co-workers. I do not have any known lung involvement. I don't live in the area where the fungal infections happen (although I keep getting random athlete's foot for the first time in years. Gross. I'll tell my doctor. ) I have never had azathioprine.

However, in the past few weeks, I've been wiping noses of sick kids at the school I work at. At respite camp, I had to help the nurse apply a topical cream to a kid's rash. (And we know rashes usually don't show up in good places. That's all I'm saying.)

I'm super careful about my gloves now. I wash my hands and use so much sanitizer that my hands are about to fall off. I earn dirty looks when I stop doing my job to run over and sanitize my hand for the billionth time. But I'm scared as hell.

This is where science and statistics confuse me. Do I, 31 years old, no history of heart trouble, no real lung involvement other than chronic bronchitis every few winters, have a 2 to 2.8% of dying from this medicine? Or is my actual risk much lower? Or, as my husband says, is it a 50-50 all the way -- "You either die or you don't."

Still, I haven't had a bad hand day in a long time. The fatigue, as always, is a killer, but the joint pain is really down again.

Is this worth my life?

What kind of life is it when the pain is bad? I remember just a few months ago, late April, lying in bed at respite camp, listening to the kids breathe, and being in so much pain and so desperate that I couldn't sleep. There's nothing more miserable than pain. It's the ultimate subjective experience -- you can't get into someone's pain. It sets you apart, makes you your own island.

When I'm at work at the conductive education center and I see that look on a kid's face, and I'm bending stiff muscles into a certain position, I think about how I would kill anyone trying to do that to me if my knees were sore. I can feel the cartilage creaking under my palms sometimes. And I'm in awe at the strength it takes at 3 years old, at 4, or 5 or 6, to simply keep working through whatever hurts.

Because the reward, the being expected and in turn, being able to be an active participant in your own life, is worth it. They don't know this yet... although I think they sense it.

I think that's my conclusion for the next IV of Remicade that goes into my arm on Monday. The reward is worth it.

But it still scares the living shit out of me.

Sunday, June 3, 2007

It isn't about me..oh wait, it is!

When I started this blog, I didn't want it to be about me. I wasn't disabled; I just have rheumatoid. That's an annoying fact of life, like being too short or not liking a mole on your chin or something. It's just part of me.



Well, flare-o-matic hit hard in March and suddenly I find that trying to maintain my dreams of getting my book published is damn near impossible when trying to find the energy and ability to pay my bills and feed myself are the goals of the day.


I don't want to just struggle to survive every day.


I need to learn how to be sick, how to not be all or nothing, how to not think I have to do a marathon to prove I can overcome, to not think I have to stay in bed all day to prove I'm sick. I need to learn that who I am every day doesn't depend on my SEDs rate (a measure of inflammation.) I am as powerful when I am limping as when I am running.


Who I am seems to be a moving target. What I can do every day is a moving target. Much more so the past year and really, since about March. That's hard for people to understand. I shouldn't be so upset at my ex-boss (although I do wish she'd stop contacting me). How can she understand it? I don't understand it.


This blog is supposed to be about disability. I had visions of it being the sort of informative how-to-blog that shows up in reputable places. I wanted it to be a well-researched discussion of disability and culture. Instead, I find that I need to start with my subjective experience. How can I write about Ashley X without admitting that I feel frustrated and humiliated and ashamed when I have to call in to work because I'm not able to lift and provide safe care to the children I work with who have similar disabilities to Ashley's? I feel for her parents now more than I ever did. (But I still think what happened to her was WRONG!)

This blog is about disability filtered through the eyes of someone on the borders between the two worlds -- I live in the "abled" world but have a foot in the world of chronic illness and disability. I work with people with developmental disabilities as if I'm a representative from the "abled" world, trying to assimilate the poor immigrant into job skills and not freaking out the normal people. And sometimes, when I'm tired, I think that the division is so artificial, so arbitrary, that I don't even know what I'm doing. It's like I'm carrying some secret, like I'm one of "them" but nobody knows it.


I had a great weekend respite camp. I spent today in bed and refuse to feel guilty for it.