Saturday, July 26, 2008

Gathering the bread crumbs

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

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

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

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

So I fretted.

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

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

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

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

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

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

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

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

Is it worth it?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Friday, July 25, 2008

My uncle

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Saturday, July 12, 2008

Visual schedules and tasks lists

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

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

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

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

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

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

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

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

green paper with 4 tasks listed

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

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

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

I'd like to market it somewhere. The closest thing I've seen is a schedule from Attainment Company:

Tuesday, July 1, 2008

Zac Browser and Surrender

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

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

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

It's at Brain, Child.

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

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

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