Tuesday, December 16, 2008
Lids off Jar Opener
Rating - 8 /10
I bought one for my grandma a few years ago and then got a hold of this one at a garage sale. I've given it to my father-in-law (well, it's in the trunk to give to him) and I miss it.
Unfortunately, it takes up a lot of counter space. And it does not fit the one thing I consistently can't open -- the tank on my cats' automatic waterer. Still, handy. I haven't convinced hubby it's worth the counter space but he's never been in the house himself without being able to open anything.
Rechargable Can Opener
6 out of 10
I can't work a manual can opener without a measure of pain involved. Come to think of it, crying over a can of green beans while the boy I was supposed to be watching tore through the house was a main frustration of my job a few years ago. It was her house so I used her tools. I should have brought this over with me.
Unlike those under-counter models I grew up with, this one doesn't make me have to lift or support anything. My friend M. who has use of one hand, uses this too.
I struggle to get it to clamp down right on the lid though. When it works, it's great, but when I can't get it to attach right, it's frustrating.
My mother and stepfather-in-law just bought me the one touch can opener.
We'll see what happens. Apparently there's a One Touch Jar Opener too, but it's flimsy compared to my (I mean now my father-in-law's) Black and Decker.
I don't have a lot of cool kitchen stuff, and since my hands have been hurting lately, now might be the time to investigate options. What do you get someone who hates to cook and has achy hands? I can tell you what doesn't work for me:
1) those lovely pampered chef stoneware things.
Too heavy. I can't lift them.
We have a set of really nice Cephelon pots and pans that hubby and I bought after the wedding with our Bed Bath and Beyond certificates. Same principal. Too heavy -- not necessarily too heavy to cook with, unless I'm doing something that needs to be lifted -- but too heavy to wash Not a good idea. I've often thought about secretly buying a saucepan and frying pan at Walmart.
2) the pampered chef chopper
wanted it to work really badly but the force required to hit the thing was not good.
To be continued....
Tuesday, December 9, 2008
I've tried to keep the focus of this list disability-related:
For the first installment, I bring you a discussion of shoes. Considering the tears shed at my little sister's wedding over my footwear limitations, (her tears from aggravation, mine because I FREAKING HURT!) shoes are sensitive right now, literally and figuratively. I went through a phase where I could only wear my Tevas -- that's no joke in November. Here are a few options for those of you shopping for limping family members.
I currently own three pair of shoes that I can stand to spend a day in -- 1 pair of Asics tennis shoes, one pair of Easy Spirits that pass as black dress shoes, and one pair of brown speedo aqua shoes that I wear with kakis and try to pass as brown dress shoes. (I know how tacky it is, but pain is also tacky!) All are pretty worn out and gnarly, btw. Here are the best shoes I've found for my arthritic feet. I'm sure there are better shoes out there, but I'm also broke.
My tennis shoes years ended a long time ago, I thought, in college when my toes began to drift inwards. Silly me. It was just my BAD tennis shoes years that have ended. I hobbled around college in cheap men's tennis shoes after wearing out my second pair of Docs. In AmeriCorps, I discovered Rykas. They accommodated my ever-drifting toes and flattening arches because they are made for women -- not just trimmed down men's running shoes. Women tend to have much smaller heels, so Rykas have smaller heels and wider toe boxes. I wore out several pair in my AmeriCorps/running/marathon phase.
I'm torn between being nostalgic and wondering what kind of crazy girl I was to run a marathon. No wonder I'm trying to save my feet! I foolishly did not have orthodics then, so I can't attest to how they do with orthodics at all. (Ran a marathon, no orthodics. Dear god, what was wrong with me?)
Asics Duomax: Ooohhh.... I just did a search to see if I could steal a photo and guess what?! They still sell these!! yayayaya. Amazon has them for $50. I paid $120 for mine 2 years ago at my little sister's chiropractor's. He does all sorts of gait analysis for runners and stuff and I'd been hobbling around on my orthodics for a few years and thought he could give me some advice. Mine look like heck and I'm afraid it's to the point where I can't even wear them anywhere but to mow the yard. But they hold my feet in nicely and keep me from turning my ankles. I've added some dorky cord locks and smaller laces. These shoes have served me nicely, aside from a phase where that alien bump on the top of my foot was swollen and supersensitive (and yes, there is a medical term for alien bump but I forgot it. )
Here are my Easy Spirit shoes that pass as my dress shoes. Mine have a little bit of red trim and are the "Pathmaker" style instead of whatever these are, but really, same thing. They won't win me any fashion awards and it sometimes hurts to have to fight the old ladies for the shoes, but they are black, stretchy, and accommodate orthodics. Because I have worn mine to work about 4 out of every 5 days this year, mine are starting to look shabby. They aren't built to last, but I guess lasting a year of heavy use is good enough for $50 shoes.
My Sam's Club $20 brown speedos have absolutely NO serial numbers on them so I can't tell what kind they are. They have been wonderful though -- brown nylon, breathable, with fake laces and they look like a all-terrain type shoe. When I first got them, the elastic was too strong and I struggled to slip them over my heel. If you go to Sam's Club this season and see these, I'll take a 9 in brown and black. Thanks.
Those of you who knew me when might wonder about the Doc Martins I used to love and live in. They were great for when I was first sick -- light but with a little support. More importantly, I thought they were Cool As All Get Out (tm). (I mean, come on! Whip in the Livecrime video had the exact same pair! And yes, that was yet another Queensryche reference.) I wore out two pair in college and had another in Ireland. That's where the alien bump appeared, a perfect friction mark between my feet and where the laces are tightened most on the boot. Oops. I was shown how my very unsteady gate makes Docs a Bad Thing (tm) for me because of how quickly I can wear down the underside, making them very uneven. So except for special occasions (you know, like my wedding, where I wore white Docs) Docs are a thing of my past, like my motorcycle jacket and embarrassing love for hair metal (oh...wait.... but Queensryche transcends hair metal).
Other shoes that work for me:
Tevas! I've had two pair of Teva Pretty Rugged and I have a permanent Teva tan --something I was very proud of in my days on the beach in San Diego. They are the only shoes I can wear when the alien bump swells and because they are velcro, I can adjust them to whatever size my feet happen to be. However, unless they are in really good condition, it's hard to dress them up at all, even in Fayetteville where I tried for hippie teacher and tried to wear them under long dresses. Also, the rubber is pretty susceptible to my bizarre wear patterns and without orthodics, they can be inward slanting quickly. I've had the velcro give out on me when walking down hills -- helllllo face plant. Still, these are shoes worth investigating if you happen to live with an alien bump on your foot.
Beware. Tevas will stink and there is NOTHING you can do about it.
I've worn crocs on and off with varying success. My main objection is they look dumb. I wear them alot and I know they look dumb. And I realize this is someone who wore knee-high suede elf boots for years in high school and was married in Doc Martins. But I still think they look dumb. Still, they are tolerable when alien bump doesn't scream at me. With socks on (and I know that's double dumb) I can wear them on days I can't wear other shoes.
I'm currently investigating Drew Shoes. They are made to accommodate orthodics and all shoes are made on similar lasts, so you can order by last once you find a shoe that fits.... which for me, is, of course, the problem.
I'm not a fashion queen, by any stretch of the word, but I'm starting to realize how much my scuffed up sad excuse for footwear undercuts any professional image I'm trying to create.
Still, I think of M. and how she only has one pair of shoes that will fit over her AFOs. Like me, her shoes wear out and get dirty pretty quickly. (I think scuffed up shoes is less a lack of attention, like my sister claims, and more of a symptom of mild mobility impairment -- we're always scuffling and tripping and scraping in ways that most people don't. )So she's stuck wearing dirty tennis shoes to church and to her job. If I end up liking my Drew's, I should send a catalog her way.
I've tried Merrils -- I have a pair of hiking boots from when I could hike, but mostly they are too narrow. I've tried Birkenstocks and all of those brands at the various outdoor stores that are supposed to be flexible and breathable and all that. But with the exceptions of the ones listed here, I just flat out can't find shoes that I can stand for more than an hour or two.
This is not the biggest problem in the world. This isn't even my biggest problem today. But for some reason, I felt compelled to share my shoe frustrations in hopes that there is someone out there that has an answer.
Besides the travelscoot, which would be my answer to a lot of this.
Thursday, October 30, 2008
Rheumatoid arthritis hand gallery.
I didn't mean this to be the all rheumatoid, all the time blog. I posted before that I had a Zac Browser but no Zacs. Now I have plenty of Zacks and Daniels and Lauras too... so much time that I don't know how to keep up enough to even form thoughts on them.
So I'll obsess about my slowly drifting hand and feet joints.
Tuesday, October 28, 2008
Then I remembered -- oh yeah -- I have rheumatoid and narcolepsy. That'll do it.
I'm also wondering about my statins. I've been on generic zocor since August. I'm understanding that it can break down muscle tissue. Great. That's just what I need.
However, I was really amazed at what I found out -- not just about the scariness of the muscle-eating side effects, but also about what statins can do. The fatigue DOES indicate I need a blood test to make sure proteins from my muscles aren't being carried into my kidneys. Lovely. But there are trade offs. For one, I have a lower chance of dying from heart disease. AND... as an added bonus, clinical trials hint at effectiveness against RA.
Any lowering of inflammation in my body is a good thing, me thinks.
There is an earlier 2004 study that shows the same results.
Good to know.
I'm still sore. And paranoid. Is my joint swelling or is that muscle tissue being eaten?
Wednesday, October 15, 2008
Although my best friend Susan and I liked to sing that one at the top of our lungs are we piloted her sky-blue Omni through the streets of that tiny town we thought we owned, we never could figure out exactly what the lyrics were about. Something with birth and death and angels. But the refrain was so haunting that it didn't matter.
Now I'm walking around with those lyrics in my head. And a tiredness in my hands when I type or try to answer questions on a test. And a pain just below my kneecap. And a swelling in my right foot. I slept close to 40 of the last 72 hours.
Maybe it's nothing. Little to no sleep, standing in shoes that I knew were bad for me. But every since my remicaid was cut off, I wait for the flare to begin again. It's like I know it's there -- just waiting on me to let my guard down, to be happy at my job and at my life... the other shoe is always there. Except in this case, it's a high heeled one that was spectacularly stupid of me to wear.
Maybe I'm wrong and it's all a change of the weather.
I never used to be this scared of it before.
Monday, August 25, 2008
Watch this ad and Pledge to never use the r-word to demean other human beings.
I've spilled a lot of virtual ink regarding Tropical Thunder. So, to quote the character that the movie supposedly mocks, "That's all I have to say about that."
At least for now.
Saturday, July 26, 2008
I obsessed. I looked at Google Health, Microsoft Health Vault, EMRy stick. Through Google Health, I learned of MediConnect Global and My Medical Records.com, 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 MyMedicalRecords.com. 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
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
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. .The 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.
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: http://www.attainmentcompany.com/xcart/product.php?productid=16288&cat=0&page=1
Tuesday, July 1, 2008
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.
Sunday, June 29, 2008
Darvocet is a popular medication prescribed to relieve arthritis pain. Darvocet is a combination of acetaminophen and propoxyphene. According to Public Citizen, a National Non-Profit Public Interest Organization, "Darvocet, Darvon, and all medications that contain propoxyphene should be withdrawn from the market". The organization has actually sued the FDA because it failed to act on a petition submitted February 28, 2006. In that petition, Public Citizen stated that propoxyphene:
* is physically and psychologically addictive
* is no more effective than safer alternatives
* has been associated with more than 2,000 accidental deaths in the U.S. since 1981
Propoxyphene was one of the 25 most prescribed generic drugs last year. There were 22 million prescriptions for propoxyphene filled in 2007. According to Public Citizen, "A large proportion of the deaths from propoxyphene occurred because most of the drug is converted into a metabolite that is highly toxic to the heart, lasts longer in the body than the original compound and results in cardiac depression. Adverse cardiac events associated with propoxyphene include an interruption of heart transmission of electrical impulses, slowed heartbeats and a decreased ability of the heart to contract properly." Public Citizen’s book, “Worst Pills, Best Pills,” has listed propoxyphene as a DO NOT USE drug since its first edition in 1988. Public Citizen states in its complaint that darvocet is a relatively ineffective painkiller -- and the pain relief is comparable to ibuprofen.
-- end quote
I seem to be getting all the grim news about RA coming across my RSS feeder. I spent a lot of time on Darvocet when I was first diagnosed. I guess a 17 year old doesn't have to worry as much about cardiac arrest. Interesting news though.
Saturday, June 28, 2008
FRIDAY, June 20 (HealthDay News) — Rheumatoid arthritis (RA) patients treated with methotrexate have an increased incidence of melanoma and other cancers, an Australian study says.
Methotrexate (MTX) is a disease-modifying anti-rheumatic drug (DMARD) commonly prescribed to RA patients. A link between the drug and cancer has been suggested, and there are even concerns that the drug itself may be carcinogenic, but research examining this concern has proven inconclusive.
his new study included 459 RA patients (309 women, 150 men) who started treatment with MTX prior to June 1986. During a total of 4,273 person-years of follow up (an average of 9.3 years per patient), 87 cancers were identified.
The researchers found that the RA patients who received MTX were 50 percent more likely than people in the general population to develop cancer of any kind. In terms of specific cancers, the RA patients had more than a fivefold increased risk of non-Hodgkin lymphoma, a threefold increased risk of melanoma, and almost a threefold increased risk of lung cancer.
The increased risk levels for non-Hodgkin lymphoma and lung cancer were similar to the findings of studies in Europe and in the United States. However, the increased risk for melanoma identified in this study was new.
I've been on methotrexate since 1995, just so you all know. I knew about the increased cancer risk, but five-fold??? threefold??? 50% more likely than the rest of the world?
Lately the systemic risks associated with RA have been troubling me, even more than the RA itself. I had a routine health screen done in Feb and the cholesterol and triglyceride rates were high. I was able to bring down the cholesterol by half-heartedly dieting but the triglycerides continue to rise. Good news is that my fasting blood sugar was okay both times and I've always had low blood pressure -- even with the provigil, my blood pressure has risen to normal. However, my resting heart rate is a little fast.
People with RA DIE of heart disease. This post from last year freaked me out: Rheumatoid Death Rates Remain Unchanged. This quote bothered me: 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.
"no matter what we do" keeps going around in my head.
I'm on day 5 of the South Beach Diet. I want to kill something, cover it in chocolate, and eat it while drinking a Dr. Pepper. I don't plan to be strict forever and I feel so silly shopping with my book in my hand. I'm very frustrated with the South Beach Site -- they charge $5 a week to be a member (except right now I'm taking advantage of my free 7 days). The site focuses on weight loss. Frustrating -- I don't care what size my jeans are. Okay, I care, but enough to make me want to try roasted eggplant -- I kid you not, I roasted an eggplant today. This is coming from me, who thinks a vegetable is yucky and the food pyramid consists of pop tarts, Dr. Pepper, and Baby Ruth bars.
I want to see if I can keep myself from having a heart attack in my 40s, from being one of those people who die of RA and its complications. There's a weight tracker on the site. What about a cholesterol tracker? Blood sugar tracker? Any indication whatsoever that the web site is designed to help people be healthy? Nope.
Lately, all of the studies in cardiology show the link between C-Reactive Protein and heart disease. C-Reactive Protein is a measure of inflammation. My current (former?) rheumatologist uses it to measure my RA progression. (Other docs have used SED rates). I'm want to get my last bloodwork from May and then compare my C-Reactive Protein levels between then and now. If eating all of this green stuff doesn't actually lower the inflammation in my body, then I think that South Beach might be a vain hope to stave off odds that it can't hope to touch.
If that's the case, if I'm going down on this on this boat, I'm going down with a Baby Ruth and Dr. Pepper, not a mixed green salad and a Diet Rite.
Monday, June 9, 2008
I'm taking this breakup from my rheumatologist sort of hard. It's an amicable divorce, but there's unfinished business. I'm transferring custody of my damaged joints, my high cholesterol, my medication lists, my lack of hypocretin, my confused immune system to someone I have not met, simply because my husband has a new job in a new state.
I will arrive with notes, records, X rays. Please do good for me, I will say, holding them up to a first year fellow in a teaching hospital.
Where is the match.com or EHarmony for rheumatologists? I want to be matched on 22 levels of compatibility too. I want to know how this person feels about biologics, about prednisone, about whether or not he/she can prescribe provigil or if I have to find a neurologist too.
My relationships with rheumatologists has been a sordid history, full of high hopes and expectations and sometimes tears.
First, there was the internist, not really a rheumatologist, just the best we had nearby. He explained nothing to me, just kept giving me more and more disalcid until I couldn't walk, had an ulcer, and fainted in the shower on mornings. I remember my family doctor, the man who delivered me, seeing me about 3 months after he'd referred me. He was angry at how sick I was. He called a colleague in Kansas City, 2 hours away.
I limped into Dr. Layle's office.
He is the first of two doctors to have saved me. He looked at me, 16, 102 lbs, walking with "a pronounced waddle" according his letter, and started me that day on DMARDs. He also gave me a big ol' steroid shot, warning me that it would make me temporarily feel better, but not to over do it. I awoke the next day without pain, for the first time in months. I thought I was cured.
Every 1 - 6 months, all through college, I went to see Dr. Layle. I didn't drive at the time, so sometimes I went with friends, sometimes with my mom. My mom and I would laugh at the face he'd make when I told him about another crazy plan I had. Was it okay to take martial arts? "Lesleeeeee...." he'd grimace. What about getting my nose pierced? Was there a risk of infection? What about drinking beer on my 21st birthday? Could I do that with methotrexate? "Lesleeeeee....."
I left for AmeriCorps NCCC, 10 months of running, trailbuilding, sleeping in tents.
"Lesleeeeeee....." He retired to fight the managed care system, he said. He saw what was coming.
I saw his colleague through my AmeriCorps year. She returned to her hometown. By that time, there was a rheumatologist closer to home, so when I returned home, I saw him.
He wasn't bad but not great either. We maintained. We dated causally, if you will. Prednisone came into my life then on a regular basis. He did not worry about the side effects, although I should have. My time spent asleep, my weight levels, and other metabolic changes were sneaking up on me, although I wasn't alarmed. Didn't I run a marathon? Didn't I just do AmeriCorps? I was young and healthy.
Time to take on grad school. The first doctor I saw here charged me $800 for the initial visit. I was shocked. He never really talked to me, only got angry when I didn't do my labs. I totally understood that, I needed to do my labs, but I wanted to talk, to help figure out what was going on. He had 15 minutes scheduled per patient and damn if I was going to throw him off. I wanted a relationship, he wanted a hook-up.
To be fair, he was the first to think my sleep was not normal and suggested fibromyalgia. I spent my first years of grad school in a terrible muscle-relaxer induced haze. I thought it was fibro-fog. It was med-fog.
I finally was fed up with $800 for 15 minutes and taking 30 minutes to remember to put on my shoes in the morning.
I found my current rheumatologist, Dr. Sattia. We sometimes do not agree on things, although we both agree that I probably don't have fibromyalgia. When my sleep reached a crisis level and I was sobbing in his office to please help me, he said that my lab work was fine, so I should not be sleepy. He did not want to deal outside of his specialty area, he had told me that from the beginning, but I couldn't figure out what the hell was making me so tired. That was hard to forgive. Also was the two months spent in Europe where I walked all over Galway, upset and in pain, trying to find a strange doctor's office to get the bloodwork I needed so that Sattia would let me have a refill of my prednisone. I swore at him up and down the streets of Galway, and I still swear my synovial cysts developed then. What was three more weeks without bloodwork? What kind of doctor withholds medicine from a patient overseas? But that stubborness also makes him a good doctor, so I grumble and do what I need to do. I know that I am better monitored now that I've been in my whole life. He lets me research and make the decisions.
The refusal to treat the sleepiness drove me to Dr. Brown and the sleep clinic, and the diagnosis of narcolepsy, and most importantly, those beautiful little provigils that give me my life back. Dr. Sattia could have given them to me, but I never would have known what was causing my sleepiness.
And I've had a pretty steady relationship with Sattia. I trust his judgement. He didn't panic at the COX-2 news, just said he'd seen the studies and thought that I would be fine at the dose that I was taking. When I called the on-call doctor at 3 am with vomiting and not being able to stand up, they called him and he called back, saying to go to the emergency room. That was the third middle of the night call and he always calls back.
We're both ready for me to start biologics again, but he doesn't want me to be far away if a reaction happens, so he's holding off on the humira.
So, um, that's my history. I never minded going to the doctor about my RA -- in fact, I've sort of liked those moments where I can sit and talk to someone about all of this that I manage pretty quietly every day.
And now, I start again.
Rheumatologist needed: Must be familiar with RA in young adults, enjoy good conversation, be cautiously aggressive with treatment. Must be willing to listen to consult, provide information, be a good partner but let patient make own decisions. Long walks on the beach are out at this point, unless you want to help me find a scooter.
Tuesday, May 6, 2008
As the year winds up, I want to post more of the adaptive materials that I've made. I'm leaving tons of materials with Jessie or at the school, so I want to remember how what I've done so I don't reinvent the wheel.
Right now, I'm gluing backgrounds to frame puzzles. The jump between wooden cut out puzzles and jigsaw puzzles is a difficult jump for many of our kids. There are some 25 piece frame puzzles I've seen in stores, but they often have a blank background and sometimes don't have true interlocking pieces. My favorite "step up" puzzles are the Progressive Puzzles by Discovery Toys, which, sadly, Discovery Toys doesn't sell any more. It's a set of 9 puzzles with true interlocking jigsaw pieces. Three puzzles are four pieces, three have 6 pieces, and three have 9 pieces. The designs are bright and while childish, are not babyish, which I feel is important. However, the background is blank and getting started with the right piece is sometimes difficult. So I am scaffolding a bit.
First, I put the puzzles together, laid them face down on the copier, then ran a black and white copy of each puzzle. (If you have access to color, don't use it. The black and white is more of a visual contrast and lets the learner know which pieces are done.)
Next, I cut out the background and rubber cement or glue it to the puzzle frame. Final results: a more intermediate puzzle for beginning learners. Note -- the paper on the inside of the puzzle won't last very long. But hey, by the time it's ripped off, hopefully your learner won't need it anymore. Still, you can always paste another. It works for 12 piece puzzles that I picked up the line at Walmart.
(I apologize for photo quality -- I took these with my camera phone while at school.)
I tried doing this with a 70 piece jigsaw puzzle with no frame. I modge-podged the outer edges down on cardboard to make a frame, but that rendered it inflexible and I was unable to put the pieces in once the glue dried and shrank. I will keep trying to figure it out though. Maybe glueing the pieces themselves to the background would work instead putting of modge podge over the whole surface.
Monday, April 21, 2008
But thank god we don't have socialized medicine. You might have to wait for treatment, everyone reminds me.
Gastric bypass basically sends type 2 diabetes into almost spontaneous remission within days and reduces the risk of certain cancer. Wow. Bypassing the duodenum in rats puts diabetes into remission.
Like everyone else, I've sort of had a subconscious sort of prejudice about all of the options out there for losing weight. "Get off the couch and stop eating at McDonalds" my mean subconscious says when I see a weight loss commercial. But I'm starting to understand more and more what a quagmire metabolism and other things are as I'm getting older.
I watched a much loved aunt die of diabetes and it was awful. This knowledge would have saved her life. I remember in her last days, when she finally got out of long term care and back home, she was eating horribly, and I said "If she were drinking herself to death, we could call someone in to intervene and put her in rehab." No one carts someone away for eating hostess cupcakes. She was at home from the 4th of July until Labor Day, when she died. She was in her mid 50s.
She would have been saved by this surgery. However, as the article points out, the surgery is only approved for the morbidly obese and I do not think she would qualify. However, the process of the bypass itself, not the weight loss, is what seems to cause the remission in diabetes, so it would probably have similar benefits in those without obesity. My college roommate is now a type II diabetic and I worry about her.
Other medical news:
Work Disability Statistics Improve for Arthritis Patients
The often-cited stat "50% of people with RA will be too disabled to work in 10 years" appears to be no longer true.
It looks like 35% or something similar.
Hooray for small victories. I think it might be because people are getting diagnosed sooner, but hey, I'll take it.
Thursday, April 10, 2008
It's all about the mesh. XO laptops talk to each other. In real time. Not over the internet but through their own internal "mesh." I take a picture on one, it shows up the other. Not instantly, but close. I type on a word processing document, it shows up on the screen of the laptop 10 feet away.
The coolness of this is beyond words. The applications for a classroom of kids with XOs is staggering -- teacher puts two or three activities on the mesh, students log on, join the activity, and add their thoughts. Teacher browses to a website, puts it on the mesh, a kid joins in.
Right now, the worst thing about the technology I deal with is the grown up factor -- someone has to program the communication device and update the vocabulary. If the lessons are going to grow and change, I have to get there before the kids and set up the technology. A kid can't own the technology when the adult always has possession of it. I was trying to get a boy to print out what he wrote on his alphasmart the other day, but he was too possessive of it to let me plug it into the computer.
There are ways around that -- Prentke Romich makes a program that allows a computer to emulate their AAC devices and I can program that and transfer it over. I do that with Jessie's. R.J. Cooper's mini-auggie had a PC and pocket pc version of the software. Still... transfers are never smooth. Never. And the adult yanks away your machine and when you get it back, the files are different. And there are some that don't work after a transfer, something that breaks. It's how it always goes. Child ownership is a nice dream, but it's not possible in most of the technology I work with because the adult has to maintain it.
With the mesh, I could make S's spelling words as a memorize game on my XO, he could log in, get the activity, play a game with me, then keep that activity on his XO. He could change the words for his spelling words next week and I could check to make sure it's working by playing a game with him.
It sounds like a simple download, or the games of scrabble I play using facebook where my sister in Korea and I face off and grumble at each other from 13 timezones away. But it's different. It's made to be immediate. It's made to be something that I show a kid, sitting right beside him. "Okay, do you see that orange piece of notebook paper? That's your worksheet. Click on it." Not "Hold on... don't touch... see it's downloading. Wait. I have to put this file on it."
With more advanced students, there are the bulletin boards and the WebCT and Blackboards and things like that. Not real time, but close. Teacher can put an assignment up and everyone can download it. People can talk back and forth. But it's built on a college sort of model -- you think about it, you add to the conversation, someone else comments. That someone else can be in the next room or next time zone. That is really awesome experience. But it's really top down in collaboration.
But most the kids I know don't really get that experience. The internet is where the sponge bob games are. Maybe it's for sending email to people you love in real life, but it's not really until a kid is a teen that the internet becomes a tool for connecting. The mesh bridges that gap. A classroom is a dynamic connected place and I haven't found anything that can mimic or facilitate that connectedness except the XO mesh.
Some classrooms in our district have computers at every desk. I think of first graders coming into a room, switching on their computers, and working at their math problems, and I shudder. Where's the interaction in that? Where is the exploration? The program is dictating the next problem and they follow along. Perhaps we ought to set up Dilbert-style cubicles for them now.
Compare that to the XO, where the game of memorize your buddy is challenging you to is made up words he just put on there.
I'm downloading programs and testing mesh capabilities. Most of the original programs that come with the XO rock. However, I wish all of the programs could collaborate like the word processor. I was hoping that the words I typed in the speak (speech synthesis program) would be spoken by another computer, but no luck. Ditto for the music players -- I could easily jump into the current state of a jam session and use it as a starting point, but I could not make any changes that went back over the mesh to the original activity.
Anyway, I'm going to keep playing.
I'm having WAY TOO MUCH FUN not to.
Sunday, April 6, 2008
Tuesday, April 1, 2008
What happens is that I'm often left with kids to occupy them. Or I'm often thrown into a class to entertain and break up dogfights while having little power to try to help change things to prevent the dogfights. Thank god for my little XO and the Gateway. Today I used the Speak application on the XO to play Simon Says when a crisis happened -- the internet was down and there was no computer lab for the day!! These kids live for their computer lab and flash games from NickJr, but we were able to survive as they typed commands to each other. It was awesome!
I've also requested and been allowed to pull a few kids here and there to ease the congestion in the special ed room. Because of that, I've been actually able to field test some of the AT I love. Again, not in any official capacity, but as a sneaky AT bandita. Here are my favorites so far:
Contents of my AT desktop folder:
Read Please 2003 Trial Version
I field tested several screen readers for the ATACP coursework, but this one was the best. The voices are the best of any of the free readers I've played with. You do have to cut and paste and that's a problem for a lot of users. A good interface too. The Trial Version never expires, but the fee version has more features. I have not tried the fee version yet, but I might one day.
I finally got this one to work in a way that's really helpful. At the very basic level, it's a talking word processor that echoes keystrokes and/or words. I've had kids use it at this level and love it -- these are kids that can use a regular word processor, but often don't. The audio feedback seems to be such a plus. It also has a grid function where you can customize text and pictures. A user can click on the grid and the words will appear in the text document. I just now figured out how to make the grid editor work.
There are some really neat products from the DeafBlind Online site. I discovered them through OATS, the Open Source Assistive Technology Site. It's an awesome resource. I'm going to try to remember to put the link on my sidebar.
The rest of the products are from www.RJCooper.com. He makes the best assistive technology/educational software out there, hands down. He does little things, like keep the program locked so that a curious and/or distractable kiddo can't stray out of a program unless he or she knows the hotkeys.
Weekly spelling lists made fun. The program spells the word and then asks the child to do the same. I've seen kids jump with surprise - "Is the computer talking to me?" It's multi-modal -- words are seen and heard. I've seen some of my kids ace spelling tests when I give them the words, but still not be able to read the words back to me.
Same concept, but in math. Program goes through a problem, then the child types the problem.
A bit harder. Program reads a passage, then asks a question based on the passage. Child must type answer. I'm waiting to use this one on my fifth grade vocabulary group. I think this has some awesome potential. It's in Beta right now.
This is designed as a augmentative communication training program, but it's so much more than that. I use it to introduce vocabulary words. You could also use it to match vocab words to pictures and/or spoken text.
I've wished for a computer workstation for the special education/resource students where during spelling, for instance, when there are three or four different groups with three or four spelling lists, one or two kids could be doing their spelling via computer. It appears that my laptop is becoming that workstation by default. The kids love it. I just wish the adults in charge had time to see and understand it.
There's so much that can be done. I don't have the power to impliment it. Those with the power don't have the time or knowledge of what's out there...
So I creep...
Thursday, March 27, 2008
I've been thinking alot about Dewey, about how to make education relate to what is real and loved and understood in a child's life. What is understood by most of my kids is cartoons, video games, etc. So I bought a deck of Yu-Gi-Oh cards, thinking that would tap into his curiosity.
What I didn't realize -- Yu-Gi-Oh is HARD. My husband and I, both grad students, struggled with the instructions. I was disappointed. But I've come up with ways to simplify Yu-Gi-Oh as the kiddo learns about the cards and how to play. Suddenly, a kid who only is adding single digit numbers now is comparing and subtracting four digit numbers to calculate points. We're to the stage where we play with just monsters, no tributing, and whoever looses them all first looses. Next we start subtracting from 8000.
I have to laugh because it's not a child innocently exploring nature in some sort of Montessorian idealized education. In my pursuit of educational goals, I end up using a lot of Sponge Bub and Pokemon and yes, Yu-Gi-Oh. But it's fun.
Here's a link to my google document of the games. I'm also excited because I managed to post this from school, which has a block on blogger, facebook, and livejournal. Don't get me started about how we should use social networking to our advantage instead of fearing it as educators. Anyway.... enjoy the training games.
Saturday, March 22, 2008
A quote from Yahoo's People of the Web feature about Kevin Connolly, a photographer who has turned pictures of people staring at him (he has no legs) into a photo exhibit.
Beauty. Total beauty. I love the fact that he acknowledges that the starers too are not just rude or insensitive, but vulnerable in a really obvious way. I sometimes stare -- I don't mean to. As I become more and more involved in this community, I notice people all the time. In fact, when the mysterious foot bumps appeared in Ireland, a country where EVERYONE is expected to walk, and briskly so, I made it a point to really notice others with disabilities while in Galway. It helped me keep the self-pity at bay and make me realize that I was part of a well-concealed army of tourists and locals limping, wheeling, and dragging themselves on crutches all over Shop Street. I was having a conversation with a girl in my program about a story I workshopped. It was dealing with a girl named Alex and her seizure disorders and disabilities. The other girl was saying how she just doesn't really know anyone with disabilities. As she said that and pushed through the crowds, a family passed us and the younger boy had Down Syndrome. I didn't have time to see if that registered with her. It wouldn't have with me until I made my decision to notice people.
I am pronouncing publicly that I am trying to notice, to not look away, to not pretend that people with disabilities are invisible.
And sometimes, in that process, I will stare.
Kevin Connolly's artwork forces the starers into an engagement, to ask them "what are you looking at" and to have to answer. Interaction is the antidote to aimless gazing, and his artwork forces an interaction in a way that's just breathtaking.
Sunday, March 9, 2008
Researchers find high prevalence of eating disorders in narcoleptics
Washington, Mar 2 : A new study by researchers at the Radboud University Nijmegen Medical Center in The Netherlands has found that the majority of patients with narcolepsy/cataplexy experience a number of symptoms of eating disorders, with an irresistible craving for food and binge eating as the most prominent features.
"Hypocretin, the neurotransmitter that is lost in narcolepsy, has been implicated in the regulation of feeding through animal studies. Earlier studies in narcolepsy found a clear increase in body weight. However, we did not find a correlation between binge eating and increased weight.
"Binge eating is apparently not the direct cause of the obesity in narcolepsy, and this suggests that metabolic alterations may be involved.
"Nevertheless, our study shows that the loss of hypocretin function makes narcolepsy patients not only struggle with staying awake, but also destabilizes their eating pattern, which makes it harder to stay away from the candy jar," Dr. Fortuyn added.
Interesting. I've always noticed my absolute craving for bad things is worse when my narcolepsy is worse, but I'd always thought they were part of my body's failed attempt to self-medicate by wanting a short term energy fix, like a Dr. Pepper, to keep me awake. Bad food for me has always been a profit/loss gamble -- what it costs me in energy to make good food at the moments seems to be more important than what it will cost me health-wise to continue eating bad food.
I need to get better at this, but it's nice to know I'm not the only narcoleptic in the world polishing off a box of cookies in some misguided attempt to stay awake.
Wednesday, March 5, 2008
Immune Systems Increasingly On Attack
By Rob Stein
Washington Post Staff Writer
Tuesday, March 4, 2008; Page A01
First, asthma cases shot up, along with hay fever and other common allergic reactions, such as eczema. Then, pediatricians started seeing more children with food allergies. Now, experts are increasingly convinced that a suspected jump in lupus, multiple sclerosis and other afflictions caused by misfiring immune systems is real.
The whole article is here:
Hrmmm... it's all about the hygiene hypothesis, that modern living is too clean and sterile and makes our immune systems malfunction. I realize I am not, on my own, a scientific study, but I think of all the barn cats with ringworm I picked up, all the hay I climbed and jumped into, all the horse crap I shoveled, all the mud pies I made and yes, ate, and I think that maybe this hypothesis, at least for me, barks up the wrong tree. I tested my immune system.
But then again, I don't really have allergies, except hay fever that developed after I left the area I grew up in. This article deals with allergies and links all immune dysfunction to them. That's also a big jump to say that what causes allergies in one person would cause MS or RA in someone else. The auto-immune mechanism might be the same, but I can't believe that my immune system eats my joints because I didn't get enough pathogens as a kid. The end of the article dealt with trials of people with auto-immune diseases eating parasitic worms.
I'll wait for the insurance to approve my Humira, thank you very much.
Tuesday, March 4, 2008
It's 1 pm on a school day and I'm in my p.j.s, watching The History Channel. I love snow days!!
I'm recovering from last week. I organized a R.J. Cooper road trip. With a few exceptions, I was disappointed at how little help I got, but I think I pulled it off. And I did get help, particularly on the first day (thanks Sue and Camilla!).
Still, it was good. Really good. 24 people got to work with R.J. -- some of those 24 really get a lot of attention and a lot of people trying new things for them, but many don't. For several learners, I watched holding my breath. It was amazing... J.C. was there. She was amazing. My mom drove her 350 miles for this. I now have videotape evidence to show to her group home and her school on how well she is capable of doing.
There were glitches all around, but all together, it was awesome. Even for people who disagreed with R.J., there was still a buzz. I've heard from a family who doesn't want to buy a computer because their son broke their last one, but they are inspired to start picture cards and signs again for their son based on his success at the workshop. I've also spent time talking to the mom of a boy who needs computer access...and she and R.J. disagree on how to do it. Still, there's now a huge amount of people thinking about this for this boy. I haven't talked to my friend yet whose 4 year old little girl worked with R.J. and he suggested a switch by her cheek instead of the direct select she's been using. Still, even if they don't go that route, it's in their mind as an option.
I am hoping this can help my colleagues see me not just as a low-ranking pest ("Can we try this with this kid? huh/ huh?") but as someone who can be a resource.
Saturday, March 1, 2008
Monday, February 18, 2008
53 - Brooke
Monday, February 18th 09:00 pm ET
Tuesday, February 19th 01:00 am ET
Brooke, 26, was a beautiful teenager with a magnetic personality. An elite gymnast on the cheerleading squad, she looked forward to a successful and athletic life. But tragedy struck in her senior year when she was crippled by Still's disease, an early form of rheumatoid arthritis. Her doctors prescribed narcotics to ease her pain, but Brooke soon became addicted. Her heartbroken family has sought new treatments to help Brooke, but she denies she's an addict. Now her family has turned in desperation to their last hope--an intervention.
From her dad, "Brooke doesn't want to deal with any pain. At all."
From her sister, "I'm not going to let her ruin my day."
I'm watching this episode of intervention. I've seen it before. My heart breaks for this girl.
What they see as her being "pilled out" according to the older sister I see as someone in PAIN who isn't getting the right kind of help. I watch and just want to weep for her. She's late to the sister's wedding shower. SHE'S IN PAIN! That doesn't mean she's doped out. It means she's late. She hurts. I struggle to make it to school on time every day.
I watch her standing at a curb and trying to step down and my heart just breaks for her. I know that walk, that waddle, the arms held out. She HURTS.
Not that she's not abusing the situation. She took two extra pain pills for her sister's baby shower. She's passed out on the floor. Not a wise move, but understandable. The family is looking for evidence that she's a druggie. She wants to be on her A game. She takes an extra pill. It knocks her ass out.
Brother in law "I'm trying to understand what would make you fall."
UH -- ARTHRITIS!
The family says things like "She's not the same person."
Hell, no. I'm not the same person as I was before I had R.A.
Sister (Brianne): "I don't want you to come up there when I'm in labor. It can take all day and I don't want you popping any freaking pills."
Tough shit. I imagine, if had a choice, Brooke would not want to pop pills either.
Brianne "I don't get it and I just want my sister back."
Nice. I'd like to be back.
Her twin Brittany: "I feel like she doesn't care enough about me to stay straight, even for my wedding -- the most important day of my life."
So, hearing that her sister passed out and broke a glass, she decides that Brooke couldn't stand up with her at the wedding.
Brooke: "Why? Why am I being punished?"
Brittany: "This has been extremely hard for me. I'm hanging up now."
I think that the sister could have walked up the aisle and then sat down, or sat on a barstool. You CAN accommodate a sick family member. If you want to. Plop her in a wheelchair. Or would that look bad in the wedding?
Now Brooke's calling to check on her sister in labor and her mom basically just hangs up on her. WTF?
It's like they can't take that she's sick and choose to focus on her drug use. They focus on the fact that they think she has Lyme disease and she was diagnosed with RA and accepts that diagnosis-- she must just be choosing to not get well and be a druggie. But you can't get the healthy girl back by taking away the drugs. Everyone is talking about their pain but not Brooke's. Not a single person has mentioned how much pain she's in, how it's hard for her to function, how they could help her get ready. Have you ever tried to put on hose when your hands don't grip? Someone could swing by and pick her up, for goddsake. DO you see those swollen knuckles trying to work the car key?
Brittany speaking to her dad: "What were my options? Let her stay in and hobble down the aisle, or show up pilled out or two hours late?"
Let her stay in and hobble down the aisle.
Let her stay in and hobble down the aisle.
That's the truth there. She doesn't want a cripple there. She wants the sister she had before.
Oh my god! Brooke has on high heels! Who the hell let her wear those? Does anyone know how much PAIN she's probably in?!?
The counselor: "The people who she loves most in the world are saying these horrible things about her and she doesn't know another way out."
The other counselor: "She is really suffering...she doesn't want to live like that, so she doesn't mind being loaded."
Dad speaking of the wedding: "We saw a glimpse of the old Brooke again." Yeah. In high-heels. OUCH! They'd rather have her smiling in pain and looking good than looking on the outside how she feels on the inside.
Mom: "I've lost you to prescription drugs and I want you back." Uh...there's this talk about getting her back from the drugs. But are they sure it's the drugs? Could it be the disease they want to get her back from? Can they separate the two?
Okay... commercial break. I know I'm being hard on the family. I know this. I don't know what the last 8 years of their lives has been like, how many times they've picked her up for an event, helped her get ready, etc., and maybe she's been nasty or thrown it in their face. Their hearts have broken over and over trying to make it better for her and her inability to get well is just stubborn. I see it happen all the time -- my old boss for instance. She was all sympathetic about my R.A. at first. But when years went by and I was still struggling, she'd lose patience, as if I'm choosing to not get well. She would ask if I were depressed.
But honestly, the family needs counseling about grief.
When I got R.A., the sweet lady who ran the regional arthritis center talked to us about the grief process. She looked at my mom and said, "Maybe you always wanted Lesley to be a pole vaulter and now she can't be." We giggled, but it was important to understand that I wasn't getting well, that our expectations for my life were going to be altered and that was part of the deal. This family doesn't understand that.
They miss her. They miss the healthy girl. It's like she's died. It's hard to deal with...
"Pain doesn't have to interfere with your life," the counselor says.
She gives him a dirty/questioning look. It's like she doesn't believe it.
"We have a lot of work ahead of us, a lot of issues we have to work through as a family, as a whole family," the mom says. Uh-huh.
"Go get well baby," the dad says. And what happens when she doesn't? What happens when she still is in pain in a year, even though she no longer takes all the pills?
The postscript on the screen:
Brooke's doctors still can't agree on a diagnosis for her condition.
After watching this episode, Brooke agreed she is an addict.
Big whoop! She's an addict. Really, that is totally the side issue. The real issue is that she's sick and no one understands that she will be sick, maybe the rest of her life, and they have to learn not to blame her for it. She needs good treatment. Maybe biologic agents?
I know I'm being hard on the family. She's taking 12 loratab, 2 oxycotin, and 12 of something else a day. She passes out. She shakes. She gets incoherent. She is obviously taking too much medicine. In the family's defense, that is obvious.
But I can't help but take her "side." I know what that sort of pain she's in. If I still felt now what I felt like then when I was 16, I might take the same amount of pills. Pain makes you crazy, makes you out of your mind. Drugs are worth the trade off when you're like that.
Okay, these are random thoughts while watching the TV show. I hope I wasn't too hard on the family.
Wednesday, February 6, 2008
Two other teachers and I gingerly pluck knife-blades of glass out of the frame.
I try not to look inside, try not to do any thing that might give more attention to the situation and make it worse. A small boy, 8 maybe. is sitting quietly in the arms of the occupational therapist, while the secretary cleans the cuts on his hands.
He is not the someone she is talking about.
I had been in the computer room when I heard the crash. I walked by the P.T./O.T. room and saw the special ed teacher picking up another small boy, this one older but tinier, and carrying him out of the room. There were shards of glass in the hall where excited fifth graders were milling around.
"Is everyone okay?" I asked
"Henry is still in there," she said. So I walk in. The lights are off, the O.T. has a boy in his arms, there's no blood I can see. The oldest boy is walking around, flicking his fingers.
"Come on Henry" I said. He let me take him by the hand, which he doesn't normally do. He's not that type of kid. I lead him downstairs to the classroom and return to help sweep up the glass and call the nurse on the intercom.
These boys are not the someones she is talking about either.
One of the real kids, the kids that are her business, the kids that are the point of the school, the ones who can read and write and talk and let us know what's bothering them....one of them might have been hurt. You know, a child who is not autistic, not like the 3 boys in that room.
Never mind that the 120 year old school building has paper thin glass that rattles when doors slam. Later, I learn a kid shattered three panes last year by slamming a door -- a real kid. Kids throw things, kids pound things. It's the nature of kids, all kids, the real ones and the ones that they all wish would just go to another school and leave them all alone. And it's the nature of glass to break.
She walked by one more time, "It was just a matter of time, ladies," she said.
There are times when it almost hurts, when you can just feel it all break right open at the littlest thing. I felt that way Monday, watching a non-autistic boy, maybe a real boy by her estimation, sleep on the floor of the counselor's office. Oh, he has problems, behavior and sensory and home life, enough to put him on the borderline between her kids and and ours. He and I were supposed to be working on spelling words, but he was snoring. Maybe it was nothing, maybe he was up late watching cartoons. I also have heard more sinister rumors about his home life. Whatever made it so he couldn't sleep at home might be nothing, or it might be something I couldn't imagine. I sat in the counselor's office for over two hours, watching this tiny little guy under a throw blanket, sleeping so deep he scared me, sleeping so deeply he sometimes wets himself.
What I wanted to do was pull him in my lap, hold him like a momma does, or should, and promise him that he would be safe.
As I cleaned up the glass and listened to the ladies complain today, I envied the O.T. in there with the bleeding boy, holding him, keeping him calm.
Whatever battles these kids are fighting, against autism, against whatever else is going on in their lives that I don't know about, against learning disabilities and developmental disabilities, against the frustration of not being understood -- these battles are bigger than I can ever dream of. They are real, so real that it hurts.
Thursday, January 31, 2008
Tuesday, January 22, 2008
Buy. A. Bag. Of. Salt.
It was stupid icy this morning and school was not called off. That put me in a grumpy mood, and then a slip and fall in the parking lot didn't help. I landed on my butt, then on my laptop backpack, which had the Gateway and the XO smushed under me. Hello computer sandwich!
Can I get workman's comp for this?
Then, in front of me, a parent let out one of my favorite kids -- he has autism and wasn't happy this morning. He was muttering under his breath and shuffling his feet. He makes me laugh. I adore him.
I'm sore. I am waiting for my insurance to approve Humira.
I guess on days like this, I should take a celebrex. But they make me sleepy. It was already a 1 1/2 provigil day.
So what's an arthritic, narcoleptic speech aide to do? Especially since my new schedule has me _not_ being a speech aid, but really being a special ed aide. I love that, but I really felt not healthy enough for special ed work. And right now, I feel it. Every bone hurts.
I'm taking a nap.
Friday, January 18, 2008
The more I listened, the more I wanted to jump in. As we got off at the terminal, I accosted one guy and started talking about what I had just learned about access. It's not a second life if your screen reader can't deal with it. I wanted to make sure people with disabilities were included in this brave new virtual world.
The gentleman I talked to turned out to be an architect of the croquet project, which sparked my interest in open source. Now I have an xo and am now really trying to understand open source and figure out its uses in the AT world.
Why I start the story with me randomly chatting with a guy in the airport is because of something he said that the xo and now the Kenguru car (below)remind me of. I wish I could remember the quote, but he mentioned how the virtual world need not copy the inefficiencies of the physical world. He pointed to a pillar in DIA and said something like "In second life, there's no reason for that to be there. It's not holding up anything. We don't need to recreate it." He also spoke of using things like sonar, like bats do, to navigate the virtual world.
His project, Croquet, from what I gather from the net, seems more suited toward large scale, large graphics, and other high powered info. The xo is the opposite-- small technology. But both are revolutionary in their real-time syncing or meshing capabilities.
Still, I am understanding a bit of what he meant when I look at the xo. It's not, as I mentioned before, a scaled down version of a 8lb laptop, which is itself a scaled down desktop computer. Ground up, hardware and software, this was designed with a specific user in mind. Not adapted to the user. Designed for that user.
That's really a lesson we can learn in AT. As technology becomes more available, we really have infinite possibilities to solve AT issues. Like many other AT people, I tend to look at hardware first because it is so scarce. "Wouldn't it be nice if I took this alaphasmart and tried to solve _____'s problem with it?" This was stressed at the CSUN ATACP training -- we should start with the function we want, then find the hardware.
We also talked about Universal Design -- trying to build features into any project to make it as universally useful as possbile.
I would take it a step further - look at the functions we want, then design the hardware. Don't just adapt. Design. Why do we need screen readers to read graphical commands when maybe using tones to replace icons would be more efficient? With my slow painful acquisition of knowledge of open source systems on the XO, I realize I could really make the xo do anything I needed it to do -- I am limited (severely!) only by lack of knowledge in coding.
Case in point:
This car from Hungary. Tired of bulky wheelchair vans? Why are wheelchair vans bulky? Because they take a car intended for abled passengers and add a bunch of crap to it to try to make it appropriate for a wheelchair user. For some drivers, this might be a better alternative.
Note: My first embedded youTube clip! I've said before, I'm not a coder!