Today I finally watched Including Samuel. The documentary tells the story of one family's journey to educate and integrate their son Samuel, who has cerebral palsy. I've wanted to watch the film for a long time. The family is from New Hampshire, my home state. I also consider myself an inclusion success story.
I began my public school career at the age of three. I had been receiving therapy through my county's Early Intervention program since about nine months old. Federal law says that at age three services should be provided by the public school. So I was bussed about an hour each way every day to a preschool program in another district that was tailored to meet the needs of students with disabilities. After that first year, my parents led the charge to bring the teacher from that program to my district. The program that was born out of that idea still exists today. I spent two years in the preschool program. The hope was that with the right support my motor skills would catch up and I could join my classmates. At age five, I became one of the last kids to participate in what was called "Readiness." It was a class between preschool and kindergarten I spent a lot of time working to improve my fine motor skills.
I had a fantastic one-on-one aide in those years. She was literally an ever-present helping hand, She also learned the range of motion routine that we needed to do twice a day to maintain my flexibility. I admit it wasn't always easy to have to be pulled away from my class to do the stretching, but as I got older we were able to find time during the day to do it that was minimally disruptive. Eventually, we did it either during gym or recess.
Aside from needing more physical help than my peers, I and my parents wanted me to be treated just like the other kids. I did the same classwork, took the same tests, completed the same projects as everyone else. I had accommodations yes, but academic expectations were no different for me because of them. Starting in second grade, I was provided with a computer for use in completing class and homework. This accommodation was made once my school team realized that writing by hand was never going an easy thing for me. I was provided a laptop every couple of years through the end of high school.
There were battles at every turn it seemed. I participated in a summer school program of sorts focused on maintaining my physical abilities over the summers and minimize the risk of physical regression. My parents always went to the mat to get the district to continue paying for my aide so that I could start each year in the best shape possible, One year, the district even threatened to cut my aide's job during a round of spending cuts. I wrote a speech and was ready to deliver it at a school board meeting when the matter was somehow resolved without any job losses.
There's a lot more to say on my experiences with inclusion, so I plan to make this a series of posts. Stay tuned for more!
Sunday, February 17, 2013
Book Five: Room
Imagine being five years old and never going outside. Imagine that all you know of the world comes from a television set. That is Jack's reality in Room. His mother had been kidnapped two years before his birth and imprisoned in a sound proof garden shed. Jack grows up in the shed and is comfortable there. Until the day his mother decides to show him more of the world. This is the story of what happens after a daring escape. I can't say too much without giving it away. Trust me, just read this book.
Wednesday, February 13, 2013
Book Four: The Spiirit Catches You and You Fall Down
This next book was fascinating. Part medical case history, part sociology text with a smattering of anthropology thrown in for good measure. The Spirit Catches You and You Fall Down chronicles one family's journey through America's broken healthcare, immigration and social service systems.
In Western medical parlance, 18-month old Lia Lee has severe epilepsy. Her seizures are often so severe as to require her to need ventilatory support and she often contracts aspiration pneumonia when she inhales stomach contents into her lungs. Her pediatricians in Merced California prescribe the standard anti-seizure medications. Lia continues to have several grand mal seizures a month. It is determined that the little girl's parent's are not giving the proper dose of medication, Lia is removed from their care and made a ward of the State for almost a year. She is returned to her parents. Then a catastrophe strikes.
To Lia's Hmong parents, it's clear that one of their precious daughter's souls has gone missing. They do not speak English and have limited understanding of the doctor's direction as to how they should treat her seizures. They look on her epilepsy as a gift. In their culture, people with epilepsy are often marked as shaman as their seizures bring them closer to the Gods.
This is the story of what happens when two cultures clash in huge ways. It raises questions of cultural sensitivity in medicine, what it means to be a good doctor, a good parent, even shedding new light on the definition of disability. Simply incredible.
In Western medical parlance, 18-month old Lia Lee has severe epilepsy. Her seizures are often so severe as to require her to need ventilatory support and she often contracts aspiration pneumonia when she inhales stomach contents into her lungs. Her pediatricians in Merced California prescribe the standard anti-seizure medications. Lia continues to have several grand mal seizures a month. It is determined that the little girl's parent's are not giving the proper dose of medication, Lia is removed from their care and made a ward of the State for almost a year. She is returned to her parents. Then a catastrophe strikes.
To Lia's Hmong parents, it's clear that one of their precious daughter's souls has gone missing. They do not speak English and have limited understanding of the doctor's direction as to how they should treat her seizures. They look on her epilepsy as a gift. In their culture, people with epilepsy are often marked as shaman as their seizures bring them closer to the Gods.
This is the story of what happens when two cultures clash in huge ways. It raises questions of cultural sensitivity in medicine, what it means to be a good doctor, a good parent, even shedding new light on the definition of disability. Simply incredible.
Sunday, February 10, 2013
Why?
I am not religious in the slightest. Wasn't raised to believe anything in particular. As I have aged, I've started to believe that *maybe* there's a higher power. I just can't bear to think there isn't some reason for all that has gone wrong in my life. I am at a low point right now. The way things are going is just SO unfair. Why did I have to be diagnosed with gastroparesis? Why was median arcuate ligament syndrome not the reason behind it all? Why didn't I respond to the stimulator like I expected? Why did my only option have to be TPN?
Why, when I was already born in a body that fights me every single day? When I already have to work ten times harder to accomplish the simplest things? I always think it's no good to complain about how unjust my life is. I figure I lost any claim to living a fair life in the common meaning of those words, when I was born with CP. I can't help it though. What did I EVER do to deserve any of this? All I've ever done is try to live a good life. I fought so hard for this life, and I'm slowly losing my grip on it. I can't give up. I know that. Giving up would be tantamount to suicide This disease has stolen so much from me in the last 18 months. It will NOT kill me. If I'm sure of nothing else right now, I'm sure of that. That doesn't mean I don't wish it away with every thought every single day.
People say that God doesn't give you more than you can handle. Yes, yes he does. I am desperate for something to change. I'm not strong enough for this. It will break me soon, I can feel it. I know these things are meant to show people's strength but I happen to have plenty of strength. I do not want to be tested. Please, I'm bruised. Leave me alone.
Why, when I was already born in a body that fights me every single day? When I already have to work ten times harder to accomplish the simplest things? I always think it's no good to complain about how unjust my life is. I figure I lost any claim to living a fair life in the common meaning of those words, when I was born with CP. I can't help it though. What did I EVER do to deserve any of this? All I've ever done is try to live a good life. I fought so hard for this life, and I'm slowly losing my grip on it. I can't give up. I know that. Giving up would be tantamount to suicide This disease has stolen so much from me in the last 18 months. It will NOT kill me. If I'm sure of nothing else right now, I'm sure of that. That doesn't mean I don't wish it away with every thought every single day.
People say that God doesn't give you more than you can handle. Yes, yes he does. I am desperate for something to change. I'm not strong enough for this. It will break me soon, I can feel it. I know these things are meant to show people's strength but I happen to have plenty of strength. I do not want to be tested. Please, I'm bruised. Leave me alone.
Thursday, February 7, 2013
Coughlympics Redux, Or Fuck you GP
It''s 2 AM here. Instead of sleeping, I am writing. My back, chest and stomach all decided to have a bit of fun tonight. It hurts to breathe, hurts to move. It's all GP's fault.
If you can remember back to my catch up posts from last summer, you might remember that I spent a chunk of April coughing my lungs out. Then I spent a week in the hospital trying to figure out why but no answers were found. When I got home, the cough came too. It hung out until the end of September, after I had the stimulator put in. It had gotten dramatically better. Until about two weeks ago.
It's back. Just as obnoxious. Just as seemingly unsolvable. I am on a long steroid taper because first we thought it was my asthma, then when I didn't respond, we lengthened the time frame to ensure adequate absorption by my broken stomach. When I still didn't respond we started a moderate-strength antibiotic. No dice.
So today, I went and had a chest x ray taken and then schlepped to see Dr, Lungs. Good news is I don't have any infection. Bad news is we have really no earthly clue what is wrong. Our best guess is bronchospasm triggered by reflux. My reflux is 100% gastroparesis caused. See? It's all GP's fault. So, for now I've been put on liquid morphine to try to turn my unbelievably touchy cough receptors off. He also mentioned admitting me several times. Not sure what the point would be, if we can't fix it. If I can't tolerate the morphine, or don't sleep well soon, I might be forced in that direction. I'm so tired. This is not a life. This is a miserable existence. I don't want to do it anymore.
Fuck you gastroparesis!
If you can remember back to my catch up posts from last summer, you might remember that I spent a chunk of April coughing my lungs out. Then I spent a week in the hospital trying to figure out why but no answers were found. When I got home, the cough came too. It hung out until the end of September, after I had the stimulator put in. It had gotten dramatically better. Until about two weeks ago.
It's back. Just as obnoxious. Just as seemingly unsolvable. I am on a long steroid taper because first we thought it was my asthma, then when I didn't respond, we lengthened the time frame to ensure adequate absorption by my broken stomach. When I still didn't respond we started a moderate-strength antibiotic. No dice.
So today, I went and had a chest x ray taken and then schlepped to see Dr, Lungs. Good news is I don't have any infection. Bad news is we have really no earthly clue what is wrong. Our best guess is bronchospasm triggered by reflux. My reflux is 100% gastroparesis caused. See? It's all GP's fault. So, for now I've been put on liquid morphine to try to turn my unbelievably touchy cough receptors off. He also mentioned admitting me several times. Not sure what the point would be, if we can't fix it. If I can't tolerate the morphine, or don't sleep well soon, I might be forced in that direction. I'm so tired. This is not a life. This is a miserable existence. I don't want to do it anymore.
Fuck you gastroparesis!
Tuesday, February 5, 2013
And She's Down!
So today was interesting. At around 3:00 this morning, I got up to go the bathroom. Thanks TPN. Routine over, I ventured back to my bedroom to pull my shorts up. I stood up, got my shorts up, then promptly lost my balance. I was able to control my descent, but I wound up on the floor. Well hell, what do I do now? I haven't fallen in a *very* long time, so was rather clueless as to what to do.
When I walked, I was a skilled faller. They taught me how to fall-and to recover from a fall -in phyiscal therapy. They fully expected me to fall, so I was taught the safest ways to do it. I think my last fall was at age 15 maybe. Anyway, my falling skills are very rusty.
I tried for a few minutes to get on my hands and knees My knees voiced their strong objection to that idea, though. Trying to work around my running TPN was not happening. So, getting up on my own was not an option. My two choices were to wait the two ish hours until my home care nurse got there. I would be on the floor, but wasn't in danger or injured. Or I could call 911 and get off the floor. The cons to this idea were that my apartment door was locked, and the firemen would have to break in to get to me. I almost chose to stay on the floor. Until I remembered that my TPN was still running and would likely make me need the bathroom again. My bedroom is carpeted, this would've been a disaster. So, I fished my phone from beside my chair and dialed. After about twenty minutes, they were here. It took another ten minutes for them to dismantle the lock and get inside. Then it only took two guys all of two minutes to get me back to my bed,
They recommended I have my complex put something called a Knox box on my apartment. It's a box that only they have a key to. Inside would be a key to my apartment. This would eliminate the need for future breaking and rescuing's to happen. I called my complex to ask about such a thing. They had no clue.
Never a dull moment around here!
When I walked, I was a skilled faller. They taught me how to fall-and to recover from a fall -in phyiscal therapy. They fully expected me to fall, so I was taught the safest ways to do it. I think my last fall was at age 15 maybe. Anyway, my falling skills are very rusty.
I tried for a few minutes to get on my hands and knees My knees voiced their strong objection to that idea, though. Trying to work around my running TPN was not happening. So, getting up on my own was not an option. My two choices were to wait the two ish hours until my home care nurse got there. I would be on the floor, but wasn't in danger or injured. Or I could call 911 and get off the floor. The cons to this idea were that my apartment door was locked, and the firemen would have to break in to get to me. I almost chose to stay on the floor. Until I remembered that my TPN was still running and would likely make me need the bathroom again. My bedroom is carpeted, this would've been a disaster. So, I fished my phone from beside my chair and dialed. After about twenty minutes, they were here. It took another ten minutes for them to dismantle the lock and get inside. Then it only took two guys all of two minutes to get me back to my bed,
They recommended I have my complex put something called a Knox box on my apartment. It's a box that only they have a key to. Inside would be a key to my apartment. This would eliminate the need for future breaking and rescuing's to happen. I called my complex to ask about such a thing. They had no clue.
Never a dull moment around here!
Monday, February 4, 2013
Book Three: Schuyler's Monster: A Father's Journey with His Wordless Daughter
I've always been interested in memoirs of the disability experience. From the time I was small, I have always felt a connection to the people who tell these stories. I know they get it. I'm more drawn to autobiographies of people living with a disabilities for obvious reasons. My next book broke that trend in a big way.
Schuyler's Monster:A Father's Journey with His Wordless Daughter is as the title implies,is written from a father's point of view. When his daughter Schuyler is born, he has no idea that her monster already lurks in her brain. When she is diagnosed with a brain condition at around two years old, he feels extreme guilt for not knowing that anything was wrong. The disorder, polymicrogyria effects Schuyler's oral speech most profoundly. She has very little intelligible speech. When she is small, she uses some Signed Exact English,but because of some significant fine motor delays signing wasn't going to be a good long term communication tool. Always resourceful, her parents strike out to find her a voice. When she's about five, they discover Augmentative Alternate Communication (AAC) technology. The book tells the story of her parent's fight with several uncooperative schools to get Schuyler the device that she needs to be able to reach her full potential It is by turns funny, sarcastic and heartbreaking. This father reminds me so much of my own. I even told my Dad about the book when I was finished.
Hooray for hard-working tenacious parents!
Schuyler's Monster:A Father's Journey with His Wordless Daughter is as the title implies,is written from a father's point of view. When his daughter Schuyler is born, he has no idea that her monster already lurks in her brain. When she is diagnosed with a brain condition at around two years old, he feels extreme guilt for not knowing that anything was wrong. The disorder, polymicrogyria effects Schuyler's oral speech most profoundly. She has very little intelligible speech. When she is small, she uses some Signed Exact English,but because of some significant fine motor delays signing wasn't going to be a good long term communication tool. Always resourceful, her parents strike out to find her a voice. When she's about five, they discover Augmentative Alternate Communication (AAC) technology. The book tells the story of her parent's fight with several uncooperative schools to get Schuyler the device that she needs to be able to reach her full potential It is by turns funny, sarcastic and heartbreaking. This father reminds me so much of my own. I even told my Dad about the book when I was finished.
Hooray for hard-working tenacious parents!
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