Sunday, December 30, 2007

One Laptop Per Lesley

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

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

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

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

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

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

Thursday, December 20, 2007

No luck

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

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

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

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

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

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

Wednesday, December 19, 2007

I am the AT bandita

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

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

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

And then -- brick wall.

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

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

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

Well, it's not okay.

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

Until then, I creep. Ohhhh yahhh

Wednesday, December 5, 2007

XO News!

I'm keeping an eye on this link.

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

I really think the touchscreen is the key here.

Monday, December 3, 2007

Will this change the world?

One Laptop Per Child

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

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

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

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

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

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

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

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

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

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

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

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

And learning Linux!

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

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

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

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

Thursday, November 15, 2007

My homework for an ATACP module

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Friday, November 9, 2007

Sippy Cup Logic

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

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

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

And it has worked wonders with some kids I know.

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

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

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

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

Beside, a friend's toddler, who I'd also never seen walk. Walking.

The world should be better. People with cp and other related conditions should have better opportunities, better health care, better technology for helping them speak for themselves.

But Jesus Christ, there were two beautiful kids who might never walk independently walking! In front of me!

It's hard to argue with that.

But I am sometimes frustrated with conductive ed's anti-adaptation philosophy. I tried to explain it once and then it became a joke. Whenever I said something that didn't make sense (which happens quite a lot when you are distracted, tired, and stressed), we call it part of my "sippy cup logic."

I am in the business (or hope to be) of assistive technology. What I do assists. In my field, people build wheelchairs to climb steps. In conductive education, we might work a child's whole life to get him or her to climb steps under his or her own power. (In the social model of disability, we want to know why the hell there isn't a ramp there, that having those steps is as wrong as any other segregation or de facto discrimination, but that's beside the point).

I used a sippy cup as an example. I. communicates unhappiness by crying. When I worked for him, he would cry and I would run and get him something to drink. That was usually it. What I really wanted, more than anything, was to find him a sippy cup he could hold and manipulate by himself. When he was thirsty, I hoped, he would be able to get his own water, affect his own world, even without me. That, I thought, would be an amazingly valuable skill. I work in this world and can get my own needs met.

There are no sippy cups in conductive ed. When I. is thirsty, he reaches for the cup, which is out of his grasp. (A lesson learned! He loves to play in all liquids!) I, or another aide, pulls the cup to him, hold his hands over the cup, support his elbows on the table, assist him in tipping it to his mouth. He is learning to drink from a real cup, not a sippy cup, or a specially adapted "assistive technology" sippy cup. There won't be sippy cups everywhere he goes in the world, but there will be cups.

I understand that logic.

Yet for now, there are sippy cups in his world and there might not always be aides to help him with regular cups.

It's the tension between teaching and accommodating.

I worry that while I. spends years learning to drink from a real cup with a person to help him, he will lose the valuable independence that learning to get his own drink from a sippy cup can give him. The conductors worry that years drinking out of a sippy cup will make him have no desire or motivation to drink from a regular cup.

Do you teach a child how to work an electric wheelchair him or herself so that the world can be explored?

Or do you keep pushing the child into conductive ed so that he or she will learn to walk with two or three aides helping?

There is a way to do both. The two can work together. I often felt frustrated and out of place in conductive ed because all the accommodations were human accommodations -- I guess the logic is that humans can be trained to fade the level of assistance, but a sipppy cup, or other assistive technology, can't do so.

But I see AT as a road to freedom. To control the thing you rely on, whether a wheelchair or sippy cup, seems more dignified to me than to always need an aide who is making the decision about how much help you need.

That is the essential question in AT -- how to make someone own their own assistive technology and control it themselves, therefore controlling their own lives.

Control your life through your sippy cup.

I will one day write a book with that title.

Thursday, November 8, 2007

I'm totally geeking out

I'm here in Boulder, Colorado, finishing my ATACP coursework from CSUN. I was altitude sick for the first night or two, but now I'm adjusting.

There is so much here. I have learned so much. I almost don't know where to begin.

Here is what I am finding out with assistive technology -- no one has the time to implement it. Jessie has a springboard with really sophisticated linguistic capacity. Jessie has really sophisticated linguistic capacity, as shown by her combining of signs. I don't know how to use her springboard to help her advance.

M. is terrified of anything that makes her look or feel different, or anything we say she "should" learn. Yet she learned how to bowl on my Nintendo wii in like 2 seconds. She was a pro at her mp3 player, even though it really should have been too small for her to see with her visual impairment. I guess they bought her a BAT, which amounts to a really neat and expensive keyboard. But, um, no one knew how to use it, least of all Melissa.

My friend Z has been a special education teacher for years. She goes on weekend retreats with us. She told how the district had failing evaluations for assistive tech, so the tech person bought them all intellikeys with the software. She does not have time to learn intellikeys and does not want to. Guess what's not getting used?

Technology is a dirty word among most the people I work with. They see it as a waste of money and time and a substitute for human interaction. In the school I work at now, I see three beautiful alphasmarts in the resource teacher's room. She'd like more but they are too much money. Yet, while in the regular school lab, I observed two beautiful laptop carts, each with 30 laptops and a wireless access point built in. Wow. Wow. This is an elementary school folks, a small one at that. A half dozen alphasmarts would cost maybe what two of those laptops would cost.

Still, though, there is something disturbing about watching the special education class in the computer lab. Computers are not a learning tool for most of them -- they are a tool of entertainment, of cutting themselves off from the world, of shutting out. The speech teacher I work for does not believe them to be a useful education tool at all. Speech is communication and human interaction. And I see how for this generation of kids, their computer use is opposite of that.

But I still think it's possible to tap into that. It requires controlling the environment, which one can do easily on a computer. Some of these guys really can't write or type or even really use expressive language all that well, but can play complicated flash games and go ballistic when it's time to turn them off. Using the computer as a communication tool might change their lives if it could be done well. A man I sat with told me how he uses smartboards as an interactive computer interface for his class. Wow. I always thought of smart boards as how business people make presentations. (Maybe I'm bitter because when I was a T.A., we had chalk boards, but the business building next door had smart boards.)

I'm so frustrated. There's so much I want to do.

I was really interested in trying to build a lending library for my area, but I have lost the will. I think I need to work in AT first, to be able to take care of my own needs by having a job that will give me health insurance as I do this. There is a certain point that paddling upstream is too difficult for awhile.

Saturday, November 3, 2007

"We need to find out why it's killing people" -- Rheumatoid Arthritis Death Rate Unchanged

Rheumatoid Arthritis Death Rate Unchanged
By Carolyn Colwell
HealthDay Reporter

from Medicine Net.Com
MONDAY, Oct. 29 (HealthDay News) -- Americans are likely to live longer than they did 40 years ago, but not if they have rheumatoid arthritis, according to a new study from the Mayo Clinic.

"When you look at persons with rheumatoid arthritis, they do not seem to have experienced the benefits over the last several decades of improved survival the rest of us have," said study co-author Dr. Sherine E. Gabriel, a professor of medicine and epidemiology at the Mayo Clinic in Rochester, Minn.

The findings, based on a large population sample of mostly white Minnesotans, showed that women and men diagnosed with rheumatoid arthritis between 1965 and 2000 died at a steady rate of 2.4 percent and 2.5 percent per year, respectively.

During the same period of time, annual death rates declined for men and women without rheumatoid arthritis. The rate fell from 1 percent per year for women in 1965 to 0.20 percent in 2000, and for men it dropped from 1.2 percent to 0.30 percent.

"This suggests that the dramatic changes in therapeutic strategies for rheumatoid arthritis in the last 4 to 5 decades have not had a major impact on excess mortality," the study authors said.

Looking further, they also extended the follow-up to 2007 on the sample of those diagnosed with rheumatoid arthritis between 1965 and 2000, hoping to pick up any downward trend in death rates resulting from the impact of the newest medications, Gabriel explained. Unfortunately, they found no such trend.

Still, a decline could show up if future studies with a longer look back at 2000 and later, when some of the most significant new medications were introduced, Gabriel and others say.

Rheumatoid arthritis is a chronic disease where the body mistakenly attacks its own tissues. It causes inflammation and painful joints, and also may attack other organs such as the heart. About 2.1 million Americans, or 1 percent of the population, have rheumatoid arthritis, according to the Arthritis Foundation.

Cardiovascular deaths accounted for about half of the deaths for rheumatoid arthritis patients in the research sample. The findings did not distinguish between the types of cardiovascular disease that led to mortality. An earlier Mayo study confirmed a strong link between rheumatoid arthritis and congestive heart failure, however.

"It is possible that the cardiovascular interventions that improved life expectancy in the general population may not have had the same beneficial effects in patients with rheumatoid arthritis," Gabriel said.

The research did not study the causes of mortality, added Gabriel. She speculates, however, that since inflammation is thought to be a risk factor for cardiovascular disease, patients with rheumatoid arthritis represent a higher risk group, because their illness involves active, systemic inflammation.

The study was expected be published in the November issue of the Journal of Arthritis & Rheumatism.

The results are a powerful reminder that rheumatoid arthritis is a "very important and deadly disease," said Dr. Hayes Wilson, a medical adviser to the Arthritis Foundation.

"It's not just 'take two aspirin and call me in the morning,' " he said. "Get an early diagnosis and treat it aggressively. The consequence of not treating it aggressively could be excess mortality," Wilson said.

"We need to find out why it's killing people," added Wilson, who is also chief of rheumatology at Piedmont Hospital in Atlanta.

Dr. Stephen Lindsey, chief of rheumatology at Ochsner Health Systems in Baton Rouge, La., noted that while the study does not cover the impact of the latest medications, other new drugs did become available in the '80s and '90s. However, they apparently did not improve mortality, he said.

"Even when we make [patients] hurt less, they still may be susceptible to other chronic diseases such as heart disease," he added.

Because of the relationship between inflammation and rheumatoid arthritis and inflammation and cardiovascular risk, that may mean that "no matter what we do, we can't lower their mortality rate," Lindsey said. However, until that's established, "We need to pay more attention to cardiovascular status early in the illness," he said. "We need to be on top of everything and not just on top of their pain and disability."

Friday, September 14, 2007

Sicko Part II -- The Insurance Strikes Back

There's been so much to say lately, but no energy to post it. I've been struggling all summer to keep my head above water -- if by water, we're meaning the physical exhaustion of working a demanding job and the fear that every new twinge means that something terrible is happening and I won't be able to keep my job and therefore lose my insurance.

It's been bad.

Health wasn't too bad till one night about a month ago. Methotrexate reaction, ambulance, ER, sat all night and puked on myself, stoned on whatever medicine was supposed to making me not puke. All it accomplished was making me too out of it to care that the cute little student nurses had to change me and clean up after me. If they'd answered their damn call light when I needed them to hand me the stupid bucket (excuse me, enuresis basin) they wouldn't have to clean me now, would they? I was sick, stoned, alone, and miserable.

The next week, I went back to my rheumatologist, ready to discuss what happened.
Uh-oh.
The office manager comes in instead.

Not good. At All.

I owe over $1000 for my last remicade transfusion. Apparently, the insurance gave us the wrong information.

I had an intervention with the doctor and the office manager, helping me figure out how to switch to a drug that is cheaper. I wanted to talk about my misadventure in the hospital. They wanted to talk about co-pays.

(To be fair, I think he avoided talking about medical issues because he didn't charge me for an office visit.)

Michael Moore, whereforartthou?

This is the first time in my life that cost has actively made the decision of what medicine to take for me. I've always thought that I would take care of health first and everything else later. No question -- I need my medicine to survive.

In the end, I was sent home with instructions to call my insurance company and a contract to pay the $1000 I owe. I put it on a credit card because 20% interest for the rest of my life can't be a bad thing.

I was also sent home with no remicade. Bad girl. No IV drugs for you.

It wasn't as if they refused to treat me because I couldn't pay. That sounds unfair. It was they didn't want to sink more money into me via IV if I couldn't pay it back. It's a private, one-doctor practice. To have a few thousand dollars debt on each remicaid patient would sink them. I understand that, I understand that it's not a hospital where you can finance things indefinitely. I remember bills for my dad's treatment going out years after he died.

Still, I felt a little like I was being turned away from the ball. If that tells you how strange my thinking is these days -- by the ball, I mean the privilege of having a relatively new and untried poison poured into my vein via an IV for four hours to turn off vital cells in my immune system that also prevent life-threatening infections. THAT was the privilege I was being denied. Damn. Cinderella's got low standards for her idea of a good time!

(Honestly, I wanted to dump Remicade anyway because it's recommend to take with methotrexate. After this last ER incident, I'm done with mothotrexate. 12 years of it. Good bye!)

The ambulance ride will cost me $600 after my insurance pays its $350.

I can't imagine what the ER will cost. It will be a 30% co-insurance on everything.

All summer, I was caught in this horrible tension of needing to work more to get more money to pay for my health care, but not being able to work more because of how crappy I felt. The good news is that my coinsurance has to hit the $2000 stop loss limit soon and then they'll pay for everything. I decided, dammit, for all that I have suffered this year, I'm getting a scooter!

Specifically, this one:
www.travelscoot.com

Wouldn't it be bitchin?

Oh, and breaking news: Sicko Part III The Revenge of the Sicko

Today I got a call that I got hired as a speech aide in the local elementary school. Seven hours a day. No caregiving. Lots of paperwork. I'm torn between my heart cracking down the middle when I see my kids at conductive ed and wanting to scream for joy that I have a job I can do. As I get further and further from my recommended remicaide date when I was sent home with no medicine, I feel myself getting achier and more desperate every morning. I drive to work thinking "Don't hurt yourself; you can't afford it" The next logical statement would be "Don't be in a job where it's likely you would hurt yourself."

My PT says that it's like being a compulsive gambler. I have only so much energy and wellness. I run on a constant debt right now. I'm on provigil, predisone, methotrexate, remiciade just to function. And instead of functioning, I push it to the limit. It's like if someone is in debt and you loan them $1000. Instead of paying off the debt, they go spent it in Vegas, happy to have the money for a second. But they are worse off than before. I am a compulsive gambler with my health while I do this job.

When did I become so scared? I remember the nurse in AmeriCorps trying to tell me how foolish it was to go in to AmeriCorps and I was so offended. I ran extra miles, did extra trips with the wheelbarrow, showed what an unstoppable force I thought I was because I thought I could will it all away. Now, I get frustrated with people who think like that. I sense the women at Conductive Ed think that everything is in my head. You don't see pain and fatigue.

I can relax a little this weekend. I am off the hook. If a knee hurts in my new job, I only have to figure out how I am going to get around it, not how everyone else will be effected. I feel so much better even as I really grieve about leaving conductive ed.

I know that it all starts over soon -- the deductibles and preapprovals and learning a new job. But now my energy is not tied up in surviving, I can handle it.

Sunday, August 12, 2007

Sicko

So, I've just returned from seeing Michael Moore's "Sicko."

Yeah, yeah. Everyone loves to hate him. Yeah yeah, he misrepresents. I know. Thank God for the Michael Moores out there, who call it like they see it, who aren't afraid of being accused of pandering. Yeah, a boatload of sick people taken to Cuba is a publicity stunt. But damn, it got them health care. I'd go too if I needed to. Besides, what is flying a fighter jet in front of a banner saying "Mission Accomplished" if not pandering at its best/worst?

50 million Americans are uninsured. 250 million Americans have health insurance. I, by sheer luck and a very tolerant boss, manage to keep my insurance. I'm not sure for how much longer, but for now, I can work full time.

Good thing too. My next Remicade bill is $1000. I make less than $1000 a month, people. My husband, less. We're grad students. I sat there and realized what a staggering risk I am for my husband to take on. I could financially ruin him with a bad flare, or a bad reaction to my next injection. I could drag him under. Then I realize we're both so far under from student loan debt that there's really nowhere for us to go. What's more debt at this point? $4000 for Remicade (if I were uninsured), $1000 a month for provigil. This is my life.

What shook me the most was the story of a young man with kidney cancer. All of his treatments were denied by his insurance. He died.

It reminded me of another story, of another young man living not too far away from him who also had kidney cancer at an obscenely young age. My dad was in his early 40s. His insurance also denied all the experimental chemo. So we tried other drugs, went into thousands of dollars into debt while he flew back and forth to Houston. The drug he was denied? It's now the gold standard for kidney treatment.

The bills were astronomical. We paid it anyway. When he died at 46, everything he'd work his whole life to give us was gone. His business eventually failed. His life insurance found a loophole and didn't pay. My mom eventually had to enter the workforce again at age 50, having been my father's office person for so long that she had no confidence in her ability to do anything outside of the home. In fact, work stress has contributed to her divorce from my stepdad after 6 years of marriage.

The couple in the film didn't go ahead with any treatments. The man died.

Was that better? To not finance the house, the business, to leave something for the wife and kids?

Hell no. I read somewhere , in an essay written by someone who has since died of her cancer, that children experience time differently than adults. Those years of having my dad alive -- sick, but alive -- were horrible, confusing, stressful years, but they were years where I at least had my dad in my life. My little sister only got him for 14 years and that seems like an obscenity. I barely remember being 14 at times. Those years were worth it.

Why do we live in a place where this is a choice? Why do I always feel this horrible "health insurance" monster hanging over me? It's been that way since I was 23 and no longer on my mom's insurance -- every move I make is dictated by health care. If I were not constrained by the insurance question, I have no doubt I would make more money. My skills are a bit like my dad's -- I tend to pick up a job here, a job there. A little freelancing here, tutoring there. But when I'm working 9 to 5, like now, all my energy goes to maintaining, not producing. I think that's why I wasn't a great grad assistant. I could teach. I could write. I could be a student. But I wasn't able to handle them at the schedule and pace needed to maintain insurance.

Canada is looking better and better all the time. If it weren't so damn cold....

Situation resolved, but sadly so

So, I spoke to my family member from this post.
The client is question will soon be moved to an Alzheimer's skilled nursing facility. They were all sad, but relieved. Part of the frustration with him is the fear that he will hurt himself or that one of the other clients will get hurt while they are out hunting for him.

It's the end of his life in the community. But he's not in the community right now anyway. "Community" is a buzzword so often for a smaller institution. None of his staff has any training on how to help him. I hope he's better off where he's at.

I don't know if my call made any difference. But I called on a Saturday, he had an evaluation, and by Wednesday it was decided. I wonder if the fear of the State got the ball rolling, or if it was finally time.

I get so tired, you know, of forcing people to do their jobs, of making people take responsibility for what they've said they will take responsibility for. I'm tired of cursing the darkness. I'm ready to light candles.

Saturday, August 4, 2007

Hear that?

That's the sound of a whistle blowing.

Hear that?

That's the axe falling on my family's member's head for violating HIPPA. Okay, I haven't heard that yet, but I will. Soon. And it will be my fault.

I just hotlined a complaint to an out of state office regarding a group home a family member works in. One of the residents in the group home has Alzheimer's in addition to his developmental disability. His situation has rapidly declined to the point that it's unsafe. My family member is calling me freaked out because he keeps running away from the group home, refusing to get in and out of places, tying to jump out of a moving car. There are only two staff members and six residents. Many times, there is only one staff member. They can't safely retrieve him when he runs and hides.

There are alarms on the doors but they are not working.

They are not allowed to lock the doors for safety reasons.

All of this information could get my family member fired. Why? HIPPA. Health information Privacy Protection Act --grrrrr.... HIPPA is supposed to protect your vital information from people who don't need to know it. Insurance agencies can't access my records without having a valid reason. They can't look at my dad's medical records, see he died from cancer, decide that I too might be a cancer risk, and refuse to insure me.

(Wait. They do crap like that anyway...)
What HIPPA does in reality for the community of people with developmental disabilities is increase the culture of fear and silence that so many people have lived with for so long.

A friend of a friend in this field was no longer allowed to refer to her clients by name -- just their case numbers. Try hollering at a seven year old boy with autism "Get out of the road, case #4562!" How dehumanizing is that? It's like we're so ashamed of him, we can't even say his name.

If I'm out and about with a client who has autism or is in a wheelchair and a parent strikes up a conversation, I'm to give no info -- just let them stare and think "That poor kid." Most of the time, I tell parents of the child that I will probably talk about the child and ask if that's okay. Most people say "yes." They WANT people to know that S., running back and forth and hollering on the swingset, is not disturbed or trying to upset their children or being a brat. He's autistic. He likes to run and holler. I explain that to the parents and to the children in the park, who are understandably a little nervous when all 6 foot of S. comes bounding up to them to give a hug. I say "He's still learning to talk, so he hugs to say hello." They might not be great with it, but they understand.

Even with his mom's permission to say that information, I could get fired.

This blog makes me fireable.

To communicate with anyone about all that I've seen in this field, the people I've loved, what I've learned from them, where they are now, makes me fireable and sueable. Caring at all about people in this field has always been a bit of a liability because administrators take advantage of that -- it's now, thanks to HIPPA, a legal liability as well.

For my family member to call me crying and upset because this man tried to jump out of her moving car means she transmitted info to me that I had no business knowing. So she could get the axe. And J.C. who I love very much, lives in a group home owned by that administration, and I need to not burn my bridges with them if I am able to see her. They are just the type of place that rewards loyality to the administration over love for the clients -- like the Bush administration in micro.

I am going to hope that my report remains anonymous, like the nice lady on the phone said it would.

I am going to hope it was the right thing to do, that the case manager of this indivdual will investigate with sensitivity and come up with a better solution for him. I am going to hope that the group home will reply with concern and not with anger. I am going to hope that this was the right thing to do. But I'm tired of a field that gives underpaid caregivers great responsibility but little autonomy. I'm tired of worrying about who can make things right. I just have to do it and hope that it was the right thing.

Waiting to see what happens....
Afraid, even, to tell my family member what I've done....

Friday, July 6, 2007

"Right when I yelled 'Adam' he just sort turned and looked at me so I knew it was him"

I just watched a flash video of the final moments of Joseph Erin Hamley's life.

*disclaimer -- disturbing*


Former State Trooper Larry Norman received 90 days for Erin's shooting. Erin was 21 and had an intellectual disability as well as cerebral palsy. His crime was that he turned to look at a police officer who was shouting at him, didn't or couldn't make his body obey the police the way they expected, and happened to be out walking the day that police were looking for a criminal.

Larry Norman's crime was being so damn sure of the situation that he felt justified in escalating it to the point that a man had to be killed. Irresponsible even if Erin had been Adam Leadford, the man they were looking for, as I've said before.

Most disturbing is the end of the video, where Erin is either dying on dead on the side of the road, and the officers are walking around calmly. I see no first aid being administered (admittedly, the video is too blurry for me to see if it were). However, the demeanor of the police is chilling, even if one or two officers are trying to help him. They're cool. If he doesn't pull through, well, we did our jobs. Adam's no longer a threat. You can hear Trooper Norman explaining why he pulled up on a situation that was essentially a stand-off, escalate it, and then kill a young man. Damn. Had to be done, boys.

If Adam Leadford had died from this recklessness, would anyone ever had known? Norman might have been a hero.

Now he gets 90 days in jail.

90 days.

and 30 days community service.

I can't even articulate how I feel about it. It was clearly an accident, but it was clearly Trooper Norman's recklessness that killed Erin. I don't know how you punish someone for that.

Inclusion Daily's Summaries of events


Also, I've seen posts on the web criticizing the family for taking the $1 million and not criticizing the verdict.

I'm sure they'd rather have their son, thank you very much.

There's nothing to be gained from locking Larry Norman up forever or having the family openly demonize him. I belive in mercy, which is why I would never make it as a lawyer. But I hope the public would be just as understanding if a developmentally disabled young man had somehow inadvertently caused the death of a police officer. I don't think they would.

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.

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.