It starts out the same. I want to lie down and get under a blanket, only getting up to use the bathroom. The next day, I throw up. Then fever, then body aches. Usually a very stiff neck. It's hard to find a position where I'm comfortable. Sometimes I get headaches. Now that it's happened like four times, I feel like "here it comes."
Usually I figure it's going to go away. I don't want to see a doctor. I don't want to talk to anybody. One time it turned into appendicitis, and that was hell. I had to go to a god awful hospital, but I'm glad I didn't die. Getting sick is no fun at all. I wish it didn't happen so easily. I hate it when it stops me from doing the things I like to do, like surfing the internet and reading my language books.
I am obsessed with learning languages. I think it's part of my asperger's. I just think it's fun, like a new game. I like learning new ways for expressing ideas. Learning new languages gives me a new perspective. I'm really good at learning new languages. When I start learning, I usually start with learning the pronouns and then the verb conjugations. Once I’ve done that, I start learning the other parts of speech. After I’ve learned the basics of the language’s grammar, I just focus on learning new vocabulary words and practice using them in sentences. Afterwards, I just keep going until I've become really good at it. Then, when I've learned enough, I start listening to music in the language I've learned, watching movies in the language and reading books in the language.
Autism for me means being a little fussier, thinking a little differently. I assume people who have minds that don't have autism have an easier time explaining their thinking. My life seems normal to me. But I think other people have lives that are very different. School is a struggle for me. I feel like I need special care taken of me that other people don't need. I am very literal. I have a hard describing things with words. Sometimes I see images, but mostly I just feel a certain way and I can't put it into words. Some people think autism is a serious illness, but for me it's just being different. I would rather be autistic than be really sick or have cancer or be blind or deaf or mute. Actually if I was mute, than no one would expect me to talk. I'm bad at talking. It's awkward. It's kind of ironic, because I love to learn languages. Learning more languages makes me feel less isolated from a lot of things in the world. I think it will open doors for me.
I feel weird. I would like not to be autistic if I had the choice, I think I would be much more comfortable in the world. I get stressed out to easily. I am too anxious. I would be worried about taking medicine for anxiety though, because addicts have terrible lives. I would be afraid that I would be addicted if I took drugs. It's just best to stay away from them. Maybe there will be another kind of cure someday.
Sunday, October 26, 2008
Thursday, October 23, 2008
mundane yet scary moments
It is 2:30 am and I am up with my teen aspie. Usually I go out of my way to chase him into bed (he is always the last to go, excepting me of course) so I can have a couple or more hours to myself at night. It is all the peace I ever get, so it is precious to me. But now I am keeping a close eye on him. He has a fever of 104, and it's bringing back frightening memories.
Two years ago my husband and I agonized over whether or not to let T travel alone on a plane, as well as let him spend 10 days in Los Angeles (clear across the country) by himself visiting family members. He had just turned thirteen, but was extremely vulnerable. He was a little nervous about the travel aspect, but he really wanted to see his godfather and grandparents; so after much hemming and hawing, we decided to risk it and let him go. We felt so guilty that we hadn't been able to visit L.A. as much as we had originally planned when we had moved away from there five years earlier. We knew it was important for T to be able to maintain his relationships with those key people in his life, so off he went. Very bad decision. VERY bad decision, for which he almost paid with his life.
We were sending T to people who adore him most on earth. But they also didn't know anything about autism, and worse, they didn't want to HEAR anything about autism. Frankly, I don't think we acknowledged it's depth ourselves. I sent mini email lectures, and I just mostly prayed that the odds would be in our favor, and nothing bad would happen. My greatest fear was that T might wander off somewhere, but at age 13 (probably more like 8 or 9 in social maturity years), I figured he would probably be able to communicate well enough with strange adults if necessary to resolve any problems that might arise. We were anticipating that he might have social issues, if anything, but it was emergency illness that reared it's ugly head.
T had been so sick as an infant and toddler in response to his vaccinations, which was, like many other autism parents, our PRIMARY complaint. We didn't even KNOW he was autistic, because his behaviors were very mild, and his developmental delays were not that apparent back at age 6, especially for us first time parents who had no neuro typical children to compare him with. From age 5 to age 6 we often called him the plastic bubble boy, because it seemed like all he needed to become ill at that time was to merely step outside our front door. He had never been a really well child, the first year was consumed with colic, rashes, and food intolerances, he didn't sleep through the night until his third birthday, and it was difficult for him to gain weight. He had HUGE allergy shiners, and some bowel issues. He had gastroesophageal reflux for quite sometime (though they refused to medicate toddlers for this back then). During his fifth birthday "well" exam, in anticipation of possibly starting public school in the fall, we REALLY piled on the vaccines, and that was the final straw that broke the camel's back. T was sick immediately, and then with a new cold or bug every few weeks for a YEAR. I think of that time as our year in "isolation" because we hardly went anywhere or saw anybody.
But after a year of biomedical treatment, T had really rallied, and became much stronger in body and spirit. From age 7 to 8, T had a healthy appetite, collected friends like trading cards, played actively outside riding his bike, running around with the dogs in the yard, took long walks with me, couldn't wait to get in the pool, suddenly started to read like a rocket taking off. I loved it. Then I went and wrecked it by having another baby and moving to the middle of nowhere. Just a few weeks after the baby was born, my dh lost his job, and a few months shy of baby's first birthday, my dh moved back to L.A. for a year to work for his old company in an effort to staunch our financial bleeding. T was absolutely miserable, although our first couple years here, he still had friends and space to roam around. But losing Daddy for an entire year was absolute emotional torture for the boy, and who could blame him?
When dh moved back to us a year later (thank you jesus for that local job), life was a little better, but there was no doubt some damage had been done. For one thing, dh himself was in the throes of a moderate depression thanks to our long separation, and it definitely trickled downhill. Also, T was starting puberty, and though we had noticed some signs of OCD previous to that, suddenly his anxiety level seemed much higher. This was only compounded by my need to have support in his middle school years, and for the first time we enrolled him in a structured cyber school program that was a HUGE adjustment from the "unschooling" we had been practicing ever since birth. By the end of that first school year, T was so stressed out that we were thinking a trip to L.A. seemed like just the ticket for his woes.
We prepared him for the trip with social stories, I put a long list of phone numbers in his wallet, I loaded my cell phone up with minutes and let him borrow it for the trip. I made sure he had his medical insurance card, and I even called his old doctor in L.A. to dig his old records out of the archives "just in case" anything came up. Well something came up alright, and it turned out to be appendicitis, the perforated, life-threatening variety. Worse, since we weren't there with him, there was no one to rate the relevance of his symtoms, including him. T's godfather took him to his old doctor's office, but they brushed off the importance of him seeing his old specific pediatrician (who would have remembered him and his idiosyncracies) and instead pawned T off on a new partner (though old in years, and cranky) who was irritated that his godfather didn't know T's medical history better. Why should he? T was on VACATION for pete's sake, with RELATIVES.
Making the problem much more complex is a common symptom of autism: T doesn't process pain the same way neuro typical persons do. In fact, if something is really bothering him, he wants to crawl into bed under three feet of covers, and not talk to anyone or move. He certainly has a hard time advocating for himself in those situations, and cannot relate the weight or significance of his discomfort to others without a lot of support from someone who knows him very very well. The cranky old man wrote him off as having a stomach bug, and sent him on his way. He had no way of knowing how rare it is for T to complain about anything, or to vomit. A couple days later, T's poor frustrated godfather took him to another doctor at an urgent care facility, who was basically Mr. Don't Give a Damn. I believe he was so generous as to give T a prescription for augmentin, which is one of the worst antibiotics you can give to a child who has an upset stomach. Jackass.
It was killing me. T was talking to me everynight, and telling me how awful he felt. I knew that he was desperately wishing I was there. The bond between us is very very strong, and I felt a hard tug and major internal conflict. Not only could we not afford the astronomical cost of an immediate flight (or one with notice for that matter), but it would have meant leaving my aspie four year old and trying to find coverage for him while I was gone for who knows how long. Of course if I had known that T had appendicitis, you couldn't have kept me away for any reason. But all I knew was that he was miserable, and that two doctors had deemed it unremarkable, and that the other adults around him either didn't have the sense that it was life threatening (though they were definitely concerned), or couldn't convey that to us. It was probably the greatest turmoil of my life.
By the grace of god, T's body worked as it should, and his immune system rallied temporarily to prevent and fight infection. When we got him back on our coast a week after his illness started, I could tell he was a long way from better. I went to our health food pharmacy for supplies and settled in to bring him back. After a few days there was not only no improvement, but a definite decline, and I insisted on taking him into the doctor's office on a weekend. To this day, I credit his pediatrician with saving his life, because she took a short look at him and sent us straight to the emergency room at A.I. Dupont Hospital for Children in Wilmington Delaware. After a few hours of observation, they called in a surgeon for an exploratory procedure.
I refused to consent until I had the chance to speak directly with the main cheese, because the residents around me had not inspired me with confidence, mostly due to their poor ability to communicate. I felt very comforted by the fact that I recognized the surgeon immediately as the same doctor who had performed a life saving surgery on my baby just a few years earlier only six weeks after his birth when we discovered he had a twisted intestine. The surgeon told me he guessed what T's problem was, but couldn't be sure, but at any rate, they would find out when they got in there.
For the next week, I was something of a celebrity while T recovered. Complete strangers stopped me in the hallways of the hospital where my hubby and I alternated to provide 24 hour coverage for T during his stay. Everyone wanted to hear the story and share their amazement at how a child whose appendix had actually perforated and was untreated - across the country no less - was still alive. I'll never forget the look on the surgeon's face when he came out to tell us that T would be ok - it's never a good moment when you see a doctor in shock - but it's also a rare moment when you hear them tell you how wrong they were and that they can hardly believe what they saw.
NO ONE in the operating room was expecting the sight with which they were presented when they cut T open, and I got to hear more gory details than I ever wanted as they told me how they removed a litre and a half of fluid from T's abdomen, and how the inflammation was so bad that it had completely cut off his intestines from passing anything through. In fact, the appendix was so inflamed that they couldn't remove it! The surgeon told me that he cut off the blood supply to the appendix, and that it would probably shrivel up and chances were good it wouldn't even need to be removed. Best of all, by the grace of god, T had not one spot of necrosis. Most of all, they couldn't believe that T wasn't screaming with pain or acting out as they would expect from a child with his condition. I think back now that I should have used that moment to try to raise awareness. T is far from the only child with a disability who can't communicate his symptoms in an expected fashion.
T has never fully recovered since the surgery though it has been more than two years now. It's a big part of the reason that I have decided to try biomedical treatment again. He's constantly fatigued and achy, but he rarely complains. Today's fever is the first in a long time, and it's scary. Most people would probably make note of a temperature of 104. Instead, T stayed in bed, keeping to himself, wanting to be left alone. He was miserable, but it didn't occur to him to call and tell his mom that he didn't feel well. I was actually angry with him, because I took my daughter to the doctor's today, which is some distance from our house. While I was there, I took advantage of the gas expended and ran a few errands in the neighborhood.
I told T to call me if he needed me, but he didn't think it was worth the bother. When I got home too late for his doctor's office hours, I was pretty mad to discover the 104 fever. I could have been home sooner if I'd known, I could have taken him to his doctor, who knows him, who would know if this was something to take very seriously. Instead it's after 4 am now, and I'm afraid to go to sleep, in case I need to run him to the emergency room, where I expect that they will most likely dismiss T unless he's five minutes from death. T almost never gets a fever, but they don't know that. It won't seem unusual to them. T almost never vomits, but it won't concern them, because it's only to be expected if one get's a stomach bug. For anyone else, withdrawing and moaning will seem par for the course. I feel so helpless right now, just keeping my vigil and praying that he bounces right back, or at least doesn't deteriorate rapidly while no one notices that it's critical. Hopefully my husband will be up in an hour, and he can let me get some sleep while he keeps watch until the doctor's office opens. It might be nothing, or it might be everything. I wish I didn't know how fragile life can be.
Two years ago my husband and I agonized over whether or not to let T travel alone on a plane, as well as let him spend 10 days in Los Angeles (clear across the country) by himself visiting family members. He had just turned thirteen, but was extremely vulnerable. He was a little nervous about the travel aspect, but he really wanted to see his godfather and grandparents; so after much hemming and hawing, we decided to risk it and let him go. We felt so guilty that we hadn't been able to visit L.A. as much as we had originally planned when we had moved away from there five years earlier. We knew it was important for T to be able to maintain his relationships with those key people in his life, so off he went. Very bad decision. VERY bad decision, for which he almost paid with his life.
We were sending T to people who adore him most on earth. But they also didn't know anything about autism, and worse, they didn't want to HEAR anything about autism. Frankly, I don't think we acknowledged it's depth ourselves. I sent mini email lectures, and I just mostly prayed that the odds would be in our favor, and nothing bad would happen. My greatest fear was that T might wander off somewhere, but at age 13 (probably more like 8 or 9 in social maturity years), I figured he would probably be able to communicate well enough with strange adults if necessary to resolve any problems that might arise. We were anticipating that he might have social issues, if anything, but it was emergency illness that reared it's ugly head.
T had been so sick as an infant and toddler in response to his vaccinations, which was, like many other autism parents, our PRIMARY complaint. We didn't even KNOW he was autistic, because his behaviors were very mild, and his developmental delays were not that apparent back at age 6, especially for us first time parents who had no neuro typical children to compare him with. From age 5 to age 6 we often called him the plastic bubble boy, because it seemed like all he needed to become ill at that time was to merely step outside our front door. He had never been a really well child, the first year was consumed with colic, rashes, and food intolerances, he didn't sleep through the night until his third birthday, and it was difficult for him to gain weight. He had HUGE allergy shiners, and some bowel issues. He had gastroesophageal reflux for quite sometime (though they refused to medicate toddlers for this back then). During his fifth birthday "well" exam, in anticipation of possibly starting public school in the fall, we REALLY piled on the vaccines, and that was the final straw that broke the camel's back. T was sick immediately, and then with a new cold or bug every few weeks for a YEAR. I think of that time as our year in "isolation" because we hardly went anywhere or saw anybody.
But after a year of biomedical treatment, T had really rallied, and became much stronger in body and spirit. From age 7 to 8, T had a healthy appetite, collected friends like trading cards, played actively outside riding his bike, running around with the dogs in the yard, took long walks with me, couldn't wait to get in the pool, suddenly started to read like a rocket taking off. I loved it. Then I went and wrecked it by having another baby and moving to the middle of nowhere. Just a few weeks after the baby was born, my dh lost his job, and a few months shy of baby's first birthday, my dh moved back to L.A. for a year to work for his old company in an effort to staunch our financial bleeding. T was absolutely miserable, although our first couple years here, he still had friends and space to roam around. But losing Daddy for an entire year was absolute emotional torture for the boy, and who could blame him?
When dh moved back to us a year later (thank you jesus for that local job), life was a little better, but there was no doubt some damage had been done. For one thing, dh himself was in the throes of a moderate depression thanks to our long separation, and it definitely trickled downhill. Also, T was starting puberty, and though we had noticed some signs of OCD previous to that, suddenly his anxiety level seemed much higher. This was only compounded by my need to have support in his middle school years, and for the first time we enrolled him in a structured cyber school program that was a HUGE adjustment from the "unschooling" we had been practicing ever since birth. By the end of that first school year, T was so stressed out that we were thinking a trip to L.A. seemed like just the ticket for his woes.
We prepared him for the trip with social stories, I put a long list of phone numbers in his wallet, I loaded my cell phone up with minutes and let him borrow it for the trip. I made sure he had his medical insurance card, and I even called his old doctor in L.A. to dig his old records out of the archives "just in case" anything came up. Well something came up alright, and it turned out to be appendicitis, the perforated, life-threatening variety. Worse, since we weren't there with him, there was no one to rate the relevance of his symtoms, including him. T's godfather took him to his old doctor's office, but they brushed off the importance of him seeing his old specific pediatrician (who would have remembered him and his idiosyncracies) and instead pawned T off on a new partner (though old in years, and cranky) who was irritated that his godfather didn't know T's medical history better. Why should he? T was on VACATION for pete's sake, with RELATIVES.
Making the problem much more complex is a common symptom of autism: T doesn't process pain the same way neuro typical persons do. In fact, if something is really bothering him, he wants to crawl into bed under three feet of covers, and not talk to anyone or move. He certainly has a hard time advocating for himself in those situations, and cannot relate the weight or significance of his discomfort to others without a lot of support from someone who knows him very very well. The cranky old man wrote him off as having a stomach bug, and sent him on his way. He had no way of knowing how rare it is for T to complain about anything, or to vomit. A couple days later, T's poor frustrated godfather took him to another doctor at an urgent care facility, who was basically Mr. Don't Give a Damn. I believe he was so generous as to give T a prescription for augmentin, which is one of the worst antibiotics you can give to a child who has an upset stomach. Jackass.
It was killing me. T was talking to me everynight, and telling me how awful he felt. I knew that he was desperately wishing I was there. The bond between us is very very strong, and I felt a hard tug and major internal conflict. Not only could we not afford the astronomical cost of an immediate flight (or one with notice for that matter), but it would have meant leaving my aspie four year old and trying to find coverage for him while I was gone for who knows how long. Of course if I had known that T had appendicitis, you couldn't have kept me away for any reason. But all I knew was that he was miserable, and that two doctors had deemed it unremarkable, and that the other adults around him either didn't have the sense that it was life threatening (though they were definitely concerned), or couldn't convey that to us. It was probably the greatest turmoil of my life.
By the grace of god, T's body worked as it should, and his immune system rallied temporarily to prevent and fight infection. When we got him back on our coast a week after his illness started, I could tell he was a long way from better. I went to our health food pharmacy for supplies and settled in to bring him back. After a few days there was not only no improvement, but a definite decline, and I insisted on taking him into the doctor's office on a weekend. To this day, I credit his pediatrician with saving his life, because she took a short look at him and sent us straight to the emergency room at A.I. Dupont Hospital for Children in Wilmington Delaware. After a few hours of observation, they called in a surgeon for an exploratory procedure.
I refused to consent until I had the chance to speak directly with the main cheese, because the residents around me had not inspired me with confidence, mostly due to their poor ability to communicate. I felt very comforted by the fact that I recognized the surgeon immediately as the same doctor who had performed a life saving surgery on my baby just a few years earlier only six weeks after his birth when we discovered he had a twisted intestine. The surgeon told me he guessed what T's problem was, but couldn't be sure, but at any rate, they would find out when they got in there.
For the next week, I was something of a celebrity while T recovered. Complete strangers stopped me in the hallways of the hospital where my hubby and I alternated to provide 24 hour coverage for T during his stay. Everyone wanted to hear the story and share their amazement at how a child whose appendix had actually perforated and was untreated - across the country no less - was still alive. I'll never forget the look on the surgeon's face when he came out to tell us that T would be ok - it's never a good moment when you see a doctor in shock - but it's also a rare moment when you hear them tell you how wrong they were and that they can hardly believe what they saw.
NO ONE in the operating room was expecting the sight with which they were presented when they cut T open, and I got to hear more gory details than I ever wanted as they told me how they removed a litre and a half of fluid from T's abdomen, and how the inflammation was so bad that it had completely cut off his intestines from passing anything through. In fact, the appendix was so inflamed that they couldn't remove it! The surgeon told me that he cut off the blood supply to the appendix, and that it would probably shrivel up and chances were good it wouldn't even need to be removed. Best of all, by the grace of god, T had not one spot of necrosis. Most of all, they couldn't believe that T wasn't screaming with pain or acting out as they would expect from a child with his condition. I think back now that I should have used that moment to try to raise awareness. T is far from the only child with a disability who can't communicate his symptoms in an expected fashion.
T has never fully recovered since the surgery though it has been more than two years now. It's a big part of the reason that I have decided to try biomedical treatment again. He's constantly fatigued and achy, but he rarely complains. Today's fever is the first in a long time, and it's scary. Most people would probably make note of a temperature of 104. Instead, T stayed in bed, keeping to himself, wanting to be left alone. He was miserable, but it didn't occur to him to call and tell his mom that he didn't feel well. I was actually angry with him, because I took my daughter to the doctor's today, which is some distance from our house. While I was there, I took advantage of the gas expended and ran a few errands in the neighborhood.
I told T to call me if he needed me, but he didn't think it was worth the bother. When I got home too late for his doctor's office hours, I was pretty mad to discover the 104 fever. I could have been home sooner if I'd known, I could have taken him to his doctor, who knows him, who would know if this was something to take very seriously. Instead it's after 4 am now, and I'm afraid to go to sleep, in case I need to run him to the emergency room, where I expect that they will most likely dismiss T unless he's five minutes from death. T almost never gets a fever, but they don't know that. It won't seem unusual to them. T almost never vomits, but it won't concern them, because it's only to be expected if one get's a stomach bug. For anyone else, withdrawing and moaning will seem par for the course. I feel so helpless right now, just keeping my vigil and praying that he bounces right back, or at least doesn't deteriorate rapidly while no one notices that it's critical. Hopefully my husband will be up in an hour, and he can let me get some sleep while he keeps watch until the doctor's office opens. It might be nothing, or it might be everything. I wish I didn't know how fragile life can be.
Wednesday, October 22, 2008
IEP progress: so far, so good
This is the fourth year T has been enrolled in a cyber charter school (which means he's still schooled primarily in the house, but someone else picks the curriculum, and he has a different teacher for each individual class). This is the first year T has said "school doesn't suck." And it's all because of baby's first Individualized Education Plan.
With educational psychology evaluation in hand, and after fighting to proove that T was not at grade level despite mostly all A's on his report cards, we had our first IEP meeting last June. I knew the real test would come after the school year started, and now that we are almost at the end of the first quarter, I have to say that I'm impressed.
The school has MOSTLY done what they said they would, and most importantly, T doesn't hate school for the first time in four years. YIPPEE! In fact, he's ALMOST enjoying it. Now I know that school doesn't exist for the sheer entertainment value of it, but still, being happy while you're learning I think improves the quantity of what you explore and the quality of what you retain. Anyway, T is working hard and learning a lot, and I finally have a NORMAL amount of contribution as the official home facilitator.
The biggest provision T has is a reduced course load to accommodate his low processing speed. Instead of 8 or 9 classes, this year he has only six; in fact they offered him only five and he ASKED for a sixth. Basically it boils down to he has only two core courses instead of four (language arts and math but no science or social studies), two foreign languages (german and spanish, and he's studying polish, latin and eperantu on his own), something called career awareness (which I thought would be a total mick class but isn't), and a Resource class (which so far IS a mick class). He is supposed to have assignments modified for him if they are too long or ambiguous, and so far that's turning out to characterize his assignments in his career awareness class, but no modifications have been forthcoming. Don't care. He had originally a college prep language arts class, but it was over his head as the materials dealt with complex social issues, so they bumped that down to a special ed class, same grade level. He LOVES it.
So far the teacher asks simple questions about fables and greek myths, and he can handle most of them on his own. She also gives simple prompts for creative writing, and so far T is her favorite pupil in that area. I have to admit I think his stuff is really good, and he has had an enormous challenge in prior years in this area. BIG sigh of relief. I think this class will supply the missing steps or gaps in knowledge or bridge the delays he had, and since he will have extra time to complete high school, he will most likely "catch up" before he graduates. HURRAY!
On to the gifted area - algebra 1. Did I mention T has been completely self taught in math since he was born? So far it looks like he will complete the entire year's work during the first semester, so now I have to see what the school will be willing to do, maybe give him geometry or something during the second semester. Pretty impressive. Some of the credit has to go to the online interactive math curriculum otherwise known as ALEKS. T wasn't picking up the more complex stuff from lectures or text books, if we didn't have ALEKS, I'm sure he'd been behind schedule, not even current much less ahead.
The languages are the most dramatic evidence to me of the gifts of asperger's - the school didn't want him to have two foreign languages at once, but I begged and whined until they gave in, using the rationalization of a balanced schedule or some such nonsense. The truth is he just loves them so much that I wanted him to have them. His assigned resource teacher has been really great and somehow she managed to get the ball rolling.
Officially he has a "resource" class too, but so far this has turned out to be lots of requests for students to check in and discuss any challenges they are having in their other classes. Not too taxing. Probably not worth any credit. Who cares. I'm just glad he has the resource of the teacher, though the IEP itself is taking care of most of T's previous woes.
The career awareness class has very cumbersome assignments with ambiguously worded directions, and the teacher who has it is absolutely outstanding but spread way too thin this year. T keeps emailing him with questions, but they go unreturned. And the resource teacher hasn't been able to reach him herself, so the modification option hasn't been exercised either. I am highly in favor of any course that makes the kids contemplate the future, but so far this one isn't working out real well. You can't have everything! But I would be much more distressed if he wasn't doing well in any of his other courses, the ones that really matter as far as I'm concerned.
But so far overall, the ten to twelve hour days are a thing of the past. T is supposed to have occupational therapy too in order to deal with his dysgraphia, but the only provider they've offered so far is almost an hour's drive away, and that would make him miserable. I've never tried asking his doctor about motion sickness, but I think the school should do better than an hour drive anyway. That is just unreasonable. But that seems like a minor quibble. I am still trying to figure out what language skills to have him evaluated for, I know if I don't ask for just the right thing, I won't necessarily get what he needs.
I was also supposed to be working on getting wraparound services this fall, but I've been so freaking busy with dd's transition to college and continued CBT, not to mention I just barely filed our taxes before the extension deadline a week ago. With all our medical bills from my stroke plus shutting down our non profit ministry, things were a little trickier with our return this year than what I was used to. The good news is that we consulted a tax attorney who also has a daughter with a learning disability, and he has a specialty in fighting schools to compel educational services for special needs kids. Yay! Never know when we might need that.
A couple days ago I was also fortunate enough to meet with a mommy who was an attorney in her previous life; she now runs an LD podcast/blog, and she gave me a million great ideas. If I could figure out how to put links in blogs I would do it, but if you can copy ldpodcast.com into your browser, that should do the trick. I'm getting so much information from it. It was also nice to have grown up conversation without needy children around for a couple of hours too.
With educational psychology evaluation in hand, and after fighting to proove that T was not at grade level despite mostly all A's on his report cards, we had our first IEP meeting last June. I knew the real test would come after the school year started, and now that we are almost at the end of the first quarter, I have to say that I'm impressed.
The school has MOSTLY done what they said they would, and most importantly, T doesn't hate school for the first time in four years. YIPPEE! In fact, he's ALMOST enjoying it. Now I know that school doesn't exist for the sheer entertainment value of it, but still, being happy while you're learning I think improves the quantity of what you explore and the quality of what you retain. Anyway, T is working hard and learning a lot, and I finally have a NORMAL amount of contribution as the official home facilitator.
The biggest provision T has is a reduced course load to accommodate his low processing speed. Instead of 8 or 9 classes, this year he has only six; in fact they offered him only five and he ASKED for a sixth. Basically it boils down to he has only two core courses instead of four (language arts and math but no science or social studies), two foreign languages (german and spanish, and he's studying polish, latin and eperantu on his own), something called career awareness (which I thought would be a total mick class but isn't), and a Resource class (which so far IS a mick class). He is supposed to have assignments modified for him if they are too long or ambiguous, and so far that's turning out to characterize his assignments in his career awareness class, but no modifications have been forthcoming. Don't care. He had originally a college prep language arts class, but it was over his head as the materials dealt with complex social issues, so they bumped that down to a special ed class, same grade level. He LOVES it.
So far the teacher asks simple questions about fables and greek myths, and he can handle most of them on his own. She also gives simple prompts for creative writing, and so far T is her favorite pupil in that area. I have to admit I think his stuff is really good, and he has had an enormous challenge in prior years in this area. BIG sigh of relief. I think this class will supply the missing steps or gaps in knowledge or bridge the delays he had, and since he will have extra time to complete high school, he will most likely "catch up" before he graduates. HURRAY!
On to the gifted area - algebra 1. Did I mention T has been completely self taught in math since he was born? So far it looks like he will complete the entire year's work during the first semester, so now I have to see what the school will be willing to do, maybe give him geometry or something during the second semester. Pretty impressive. Some of the credit has to go to the online interactive math curriculum otherwise known as ALEKS. T wasn't picking up the more complex stuff from lectures or text books, if we didn't have ALEKS, I'm sure he'd been behind schedule, not even current much less ahead.
The languages are the most dramatic evidence to me of the gifts of asperger's - the school didn't want him to have two foreign languages at once, but I begged and whined until they gave in, using the rationalization of a balanced schedule or some such nonsense. The truth is he just loves them so much that I wanted him to have them. His assigned resource teacher has been really great and somehow she managed to get the ball rolling.
Officially he has a "resource" class too, but so far this has turned out to be lots of requests for students to check in and discuss any challenges they are having in their other classes. Not too taxing. Probably not worth any credit. Who cares. I'm just glad he has the resource of the teacher, though the IEP itself is taking care of most of T's previous woes.
The career awareness class has very cumbersome assignments with ambiguously worded directions, and the teacher who has it is absolutely outstanding but spread way too thin this year. T keeps emailing him with questions, but they go unreturned. And the resource teacher hasn't been able to reach him herself, so the modification option hasn't been exercised either. I am highly in favor of any course that makes the kids contemplate the future, but so far this one isn't working out real well. You can't have everything! But I would be much more distressed if he wasn't doing well in any of his other courses, the ones that really matter as far as I'm concerned.
But so far overall, the ten to twelve hour days are a thing of the past. T is supposed to have occupational therapy too in order to deal with his dysgraphia, but the only provider they've offered so far is almost an hour's drive away, and that would make him miserable. I've never tried asking his doctor about motion sickness, but I think the school should do better than an hour drive anyway. That is just unreasonable. But that seems like a minor quibble. I am still trying to figure out what language skills to have him evaluated for, I know if I don't ask for just the right thing, I won't necessarily get what he needs.
I was also supposed to be working on getting wraparound services this fall, but I've been so freaking busy with dd's transition to college and continued CBT, not to mention I just barely filed our taxes before the extension deadline a week ago. With all our medical bills from my stroke plus shutting down our non profit ministry, things were a little trickier with our return this year than what I was used to. The good news is that we consulted a tax attorney who also has a daughter with a learning disability, and he has a specialty in fighting schools to compel educational services for special needs kids. Yay! Never know when we might need that.
A couple days ago I was also fortunate enough to meet with a mommy who was an attorney in her previous life; she now runs an LD podcast/blog, and she gave me a million great ideas. If I could figure out how to put links in blogs I would do it, but if you can copy ldpodcast.com into your browser, that should do the trick. I'm getting so much information from it. It was also nice to have grown up conversation without needy children around for a couple of hours too.
Monday, October 20, 2008
choosing DAN and considering going public
Ok, two things, quickly. Well, quick for me, the long winded narcissist.
One is that I have officially decided to seek assistance from a DAN doctor. I think DAN stands for Defeat Autism Now, but what I'm looking for basically is someone who will help my teenage aspie with biomedical treatments. We went down this road almost ten years ago, before I had ever heard of biomedical approaches to autism, before I really even new that my son had autism. Unfortunately, though I considered the treatment a great success and saw HUGE improvements in my son's health, we have moved clear across the country away from the doctor that we used back then.
T has had serious fatigue issues ever since his perforated appendicitis two years ago that almost killed him before we figured out what was going on, just in time for him to have life saving surgery. I would say that he definitely needed the heavy duty antibiotics that he had at the time, but my best guess is that fungus has returned to haunt his poor intestines, and I don't think I can battle it anymore myself without support. His regular doctor is not concerned, he is not used to seeing kids with unusual health problems, and T's last pediatrician suggested that we take him downtown to the big children's hospital in the city far far away which T will just HATE. And frankly, I don't expect them to use non traditional diagnostic tools or treatments. I don't think they'll look for the medical problems that are often markers in autistic patients as far as physical disorders, and I don't expect that they'll have an aggressive, useful protocol either.
So now I have to look for a rare specimen, especially out in the sticks: the elusive DAN doctor. They do not grow on trees. In fact, out here in isolationville, we have a hard time keeping any kind of generalist doctor. I have to drive 45 min just to find a garden variety endocrinologist for my diabetes. So this is going to be a difficult process, one with which I could definitely use help. So now I have another decision to make: do I go public?
I had started this blog with the idea that I would keep our friends and family updated on daily activities and progress with autism issues, as well as have an outlet for frustration that is often encountered in the education process of children with learning disabilities. But I seem not to go in those directions much with the posts. And in casting around for blog examples, I feel like I have a responsibility to some extent to raise autism awareness, and that's a path I'm going down too. I am very interested in reading the blogs of the autism community as it turns out; I'm getting lots of good information from them, and now I'm staring to wonder if I shouldn't become an official member of that community. I find some satisfaction in the notion of adding my voice to theirs, if not in an overtly political way, definitely as a show of support. But do I sacrifice my privacy for this loftier goal?
There is a selfish reason for staying private. Frankly, I think I'm both ignorant (in the uneducated sense) and boring, and drawing attention to myself is opening myself up to criticism I don't feel like hearing. But if I don't risk the bad, I can't have the good.
When I make the decision to go public, I will add a long blog roll of everybody that I read on a regular basis. That's if I can figure out how to do it. One of my favorite blogs is the "diary" of an aspiring teenage writer with asperger's who recently started college; he recently debated the merits of going public with his true identity and asked for input. This was my comment:
I worry all the time about my son, who is only 15 1/2, going public, because there is still so much he needs to learn about social interaction and protecting himself. He is still EXTREMELY vulnerable and incapable of handling a lot of situations where he might be bullied or manipulated. I think he will eventually get past this stage. The fact that you are at University and living outside your parents house (granted, with a lot of support) gives me a lot of hope that my kid will one day do the same. Hopefully this will be in the not too distant future, but I am approaching going public with his identity very cautiously because he is definitely slower in his social development than his academic development.
You were discussing yourself in a couple of earlier posts how there were some challenging incidents since University started regarding socialization. I think going public is definitely going to increase the amount of personal attention you get from strangers. I think you're very smart to consider it very seriously first. John Elder Robison is a fifty year old adult with asperger's who recently got published for a semi autobiographical memoir that was super. He mentions in his blog that touring to promote his book has improved his social skills many times over than anything else he has done in his life this far.
I was wondering whether or not he debated before publishing if he should use his real name. I bet now he is glad he did because he has been received very very well by the autism community AND the general community. I am curious as to whether or not you think your current peers would do the same. It's not just stalkers. Do you think you're ready to handle it?
This is a question I need to answer for myself. I don't know how long it will take. I know I want the benefits, but can I stand the rest?
One is that I have officially decided to seek assistance from a DAN doctor. I think DAN stands for Defeat Autism Now, but what I'm looking for basically is someone who will help my teenage aspie with biomedical treatments. We went down this road almost ten years ago, before I had ever heard of biomedical approaches to autism, before I really even new that my son had autism. Unfortunately, though I considered the treatment a great success and saw HUGE improvements in my son's health, we have moved clear across the country away from the doctor that we used back then.
T has had serious fatigue issues ever since his perforated appendicitis two years ago that almost killed him before we figured out what was going on, just in time for him to have life saving surgery. I would say that he definitely needed the heavy duty antibiotics that he had at the time, but my best guess is that fungus has returned to haunt his poor intestines, and I don't think I can battle it anymore myself without support. His regular doctor is not concerned, he is not used to seeing kids with unusual health problems, and T's last pediatrician suggested that we take him downtown to the big children's hospital in the city far far away which T will just HATE. And frankly, I don't expect them to use non traditional diagnostic tools or treatments. I don't think they'll look for the medical problems that are often markers in autistic patients as far as physical disorders, and I don't expect that they'll have an aggressive, useful protocol either.
So now I have to look for a rare specimen, especially out in the sticks: the elusive DAN doctor. They do not grow on trees. In fact, out here in isolationville, we have a hard time keeping any kind of generalist doctor. I have to drive 45 min just to find a garden variety endocrinologist for my diabetes. So this is going to be a difficult process, one with which I could definitely use help. So now I have another decision to make: do I go public?
I had started this blog with the idea that I would keep our friends and family updated on daily activities and progress with autism issues, as well as have an outlet for frustration that is often encountered in the education process of children with learning disabilities. But I seem not to go in those directions much with the posts. And in casting around for blog examples, I feel like I have a responsibility to some extent to raise autism awareness, and that's a path I'm going down too. I am very interested in reading the blogs of the autism community as it turns out; I'm getting lots of good information from them, and now I'm staring to wonder if I shouldn't become an official member of that community. I find some satisfaction in the notion of adding my voice to theirs, if not in an overtly political way, definitely as a show of support. But do I sacrifice my privacy for this loftier goal?
There is a selfish reason for staying private. Frankly, I think I'm both ignorant (in the uneducated sense) and boring, and drawing attention to myself is opening myself up to criticism I don't feel like hearing. But if I don't risk the bad, I can't have the good.
When I make the decision to go public, I will add a long blog roll of everybody that I read on a regular basis. That's if I can figure out how to do it. One of my favorite blogs is the "diary" of an aspiring teenage writer with asperger's who recently started college; he recently debated the merits of going public with his true identity and asked for input. This was my comment:
I worry all the time about my son, who is only 15 1/2, going public, because there is still so much he needs to learn about social interaction and protecting himself. He is still EXTREMELY vulnerable and incapable of handling a lot of situations where he might be bullied or manipulated. I think he will eventually get past this stage. The fact that you are at University and living outside your parents house (granted, with a lot of support) gives me a lot of hope that my kid will one day do the same. Hopefully this will be in the not too distant future, but I am approaching going public with his identity very cautiously because he is definitely slower in his social development than his academic development.
You were discussing yourself in a couple of earlier posts how there were some challenging incidents since University started regarding socialization. I think going public is definitely going to increase the amount of personal attention you get from strangers. I think you're very smart to consider it very seriously first. John Elder Robison is a fifty year old adult with asperger's who recently got published for a semi autobiographical memoir that was super. He mentions in his blog that touring to promote his book has improved his social skills many times over than anything else he has done in his life this far.
I was wondering whether or not he debated before publishing if he should use his real name. I bet now he is glad he did because he has been received very very well by the autism community AND the general community. I am curious as to whether or not you think your current peers would do the same. It's not just stalkers. Do you think you're ready to handle it?
This is a question I need to answer for myself. I don't know how long it will take. I know I want the benefits, but can I stand the rest?
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