I was talking on the phone with a neighbor last night, and I was trying to sound upbeat and cheerful, so I repeated one of my oft referred to affirmations:
For every good there is a better, for every bad there is a worse.
I feel sorry for myself. A lot. So I need those kind of pithy sayings to help me keep perspective, I need them to counteract all the times I am saying woe is me. Though I never intended to use my blog to express someone else's story, this really caught my attention today. Talk about perspective:
When John and Robin Kirton first married, they knew they wanted to have a large family -- but like many couples, they had no idea what they were in for. Today, the Kirtons are the parents of six children -- each of whom has been diagnosed with autism. Discovery Health presents an intimate view of life with multiple autistic children in AUTISM x6, an hour-long special premiering Wednesday, October 1, at 8 PM (ET/PT).
To say the Kirtons live modestly would be an understatement. The entire eight-member Kirton family resides in 1,100-square-foot house with a single bathroom located outside of Salt Lake City. Caring for the children's special needs requires round-the-clock supervision, making it impossible for either parent to have a permanent full-time job and causing financial resources to be scarce. Autism x6 takes viewers into the Kirtons' world and offers a view of John and Robin's daily struggle to maintain order in the midst of chaos, where the household can spin out of control the moment they turn their backs.
Considered to be a spectrum disorder, autism ranges from severe to mild -- and the Kirton children span the entire spectrum. Viewers will meet --
-- Mary, 3: Diagnosed with pervasive developmental disorder-not otherwise
specified (PDD-NOS) -- the least severe form of autism
-- Ammon, 4: Diagnosed with classic autism -- the most severe end of the
spectrum
-- Sarah, 6: Diagnosed with classic autism
-- Nephi, 9: Diagnosed with Asperger's syndrome -- a high-functioning form
of autism
-- Emma, 10: Diagnosed with Asperger's syndrome
-- Bobby, 14: Diagnosed with Asperger's syndrome
AUTISM x6 is the portrait of a resilient family coping with the struggles of each day by rolling with the punches and maintaining their sense of humor. The documentary also serves as a profile of the unconditional love that parents feel for their children.
"We did not choose to have autistic children, but they are here," said John. "We love them, and we want to do the best we can for them. That's the right thing to do."
Online at discoveryhealth.com, visitors can learn more about the Kirton family as well as access a variety of resources for more information on autism.
Holy crap. Did I mention that I feel lucky that my sons are at the high end of the spectrum? My husband and I have recently been discussing vasectomy, as not only do we not intend to have any more biological children, not only would pregnancy probably kill me, but because of an ethical dilemma: do we knowingly risk mixing up our genes again when we now know odds are good that we would produce yet another offspring with autism? This is an actual concern of mine, since one of the side effect of diabetes has been turning perimenopausal. Just LOADS of fun. But one of the many concerns of going through menopause is that I don't have a grip on when I'm likely to ovulate, which makes birth control tricky.
But even if I knew for sure it wouldn't kill me, nor damage my health any further, and someone (who could?) give me an absolute guarantee that I would have plenty of years left on this earth to see a newborn baby raised to adulthood, I just don't want to do it. I really wanted at least one girl, even if I never had any more children. And even though we had decided after the birth of son number one that we would never chance pregnancy again (HA! said god), I still longed to have a little girl. When surprise baby number two came along, I thought, maybe here is my chance in the midst of fear to at least have a girl. NOPE. Well at least both my boys are pretty.
Truthfully, if all the other conditions could be met, and someone (again, who?) could also guarantee that I was going to have a girl, I still wouldn't do it. Even though the risk of autism passing to a girl is much less than a boy, I just don't care. I love my kids to death but I would not subject another child to a diagnosis of autism even if the odds are small. I don't give a damn how politcally incorrect that makes me.
Now I realize it may sound like I'm judging the family above. NO WAY! Their children span 11 years, and the oldest three have asperger's. There's a very good chance that they didn't even know the oldest one's diagnosis before their youngest was born. I actually have no idea about this, I just heard of them for the first time tonight. I would imagine in many families there is probably a big incentive to keep trying to have children until you get a typical one anyway. I was just one of those weird people who never wanted biological children, at least not more than one, in the first place, because I wanted to adopt from the massive pool of children in this country (in the world for that matter) that didn't already have parents.
But not only do I not judge those people who had six kids with autism, I feel for them in a big way. I was just moaning to myself about the tiny size of my house, because whatever else my kids need, they definitely really need their own space, and we can't afford to give it to them. Dividing our house by five is so so hard, having to divide it by eight, I can't even fathom how they do it. For every bad there is a worse. I think I'll go count my blessings now.
Sunday, September 28, 2008
Friday, September 26, 2008
Is there an Autism for Dummies yet?
I have decided that I need one of those books cleverly titled "the Complete Idiots Guide to Asperger's" or something like it. An article somewhere had gotten my attention about how most new cases of autism are "acquired" now; that you rarely hear a story about a parent whose child has autism from birth nowadays. I don't know if it's true or not, but one reason it got my interest was because somebody said something similar when I was diagnosed with chronic fatigue immune deficiency syndrome ten years ago. And that's just when I was diagnosed; I had the damn thing six years prior and it just wouldn't go the hell away. But while I was researching all my symptoms and looking for treatment, Someone Important (I can't remember) in the field had said that CFIDS was the true "acquired" immune deficiency syndrome as opposed to the epidemic of AIDS caused by the human immunodeficiency virus (HIV).
Well I didn't get the point, quite frankly, of quibbling over semantics like that; as if there wasn't plenty of suffering to go around. But I had a sweet friend who set me straight by saying that yes, actually, I had completely missed the point like an idiot; the relevance of the word acquired was that it wasn't something I had at birth, and yet it wasn't something I "caught" from someone else. But at the same time, it was becoming epidemic. If you think about it that way, it's pretty scary, because if there's no genetic cause, and it's not something you can avoid by contact (like for instance, by wearing a condom), then how can anyone prevent it happening to them? It was especially worrisome in that light since there is no established cure for CFIDS to go along with that unknown cause.
The triggers of CFIDS are still not well known, and are not likely to ever be. CFIDS is not considered life threatening, at least not in the short run, and although it severely compromises quality of life in a lot of cases, since it's not contagious, it's not a big concern of medical researchers. Sadly, this statement appears to be a similarly held attitude about autism, and by the time it changes, I think it will be much too late for an awful lot of people as well as too late to stop the severe drain on our economy, even talking global economy here. I few days ago I read on one of the big established autism group websites that the new statistics for diagnosis are one in every ninety four boys. Holy crap. How can we possibly sustain a hit like that? My kids are PROBABLY going to college, but they are some of the lucky ones. Even if they finish their degrees, I constantly think about whether or not they can sustain the pressures of holding a job. Last week at a disability claim filing seminar I attended, one lady there who works in a community agency says she deals with aspies all the time who have their university education, but have a work history of losing jobs every three to six months.
I had been thinking about how I should look into treatment protocols for my six year old aspie since his older brother had an unsual (as if there's a "usual") treatment for autism that had very beneficial results. But since aspie the third has never been vaccinated, I have a feeling that I need to do more research on what will be appropriate for him. Well, I tell you, I need the cliff notes version. Honest to god, unless you are a scientist or a person of significantly above average intelligence or unlimited energy, the pool of technical data to swim through is going to require a lifeguard's certification. I love my kid, but holy crap I need a brain transplant. I mean, what does the common person do? So many of the blogs I read from autism parents are authors with degrees in law or medicine or freaking investigative journalism. They all seem to have many initials that go after their names. I have a scrawny little B.S. from a publicly funded school that is located in a state that is not known to be at the top of the intellectual hierarchy, and I am not a highly motivated self taught kinda gal. I truly believe my brain has atrophied since college days despite the almost constant stimulation it gets.
Hannah Poling, the one child with autism that has thus far been awarded damages for a link between her diagnosis of autism and a reaction to vaccines is the child of a nurse and a neurologist. I just don't have that fight in me. And yes, some financial support (say, a little bit of social security funds) would be nice since there isn't a lot of money involved at being the stay at home mom of three children with developmental disabilities, although there are lots of costs, but I would be happy to settle for some insurance coverage of treatments to improve their quality of life. If I could understand, and decide on, said treatment, that is. Lordy, looks like I need to go back to medical school. I don't even have the brain power to understand it, much less to get accepted.
Not all people are created equal. We just have a higher chance of being able to apply our brains to good use if we're born with one. Or don't fry it along the way.
Well I didn't get the point, quite frankly, of quibbling over semantics like that; as if there wasn't plenty of suffering to go around. But I had a sweet friend who set me straight by saying that yes, actually, I had completely missed the point like an idiot; the relevance of the word acquired was that it wasn't something I had at birth, and yet it wasn't something I "caught" from someone else. But at the same time, it was becoming epidemic. If you think about it that way, it's pretty scary, because if there's no genetic cause, and it's not something you can avoid by contact (like for instance, by wearing a condom), then how can anyone prevent it happening to them? It was especially worrisome in that light since there is no established cure for CFIDS to go along with that unknown cause.
The triggers of CFIDS are still not well known, and are not likely to ever be. CFIDS is not considered life threatening, at least not in the short run, and although it severely compromises quality of life in a lot of cases, since it's not contagious, it's not a big concern of medical researchers. Sadly, this statement appears to be a similarly held attitude about autism, and by the time it changes, I think it will be much too late for an awful lot of people as well as too late to stop the severe drain on our economy, even talking global economy here. I few days ago I read on one of the big established autism group websites that the new statistics for diagnosis are one in every ninety four boys. Holy crap. How can we possibly sustain a hit like that? My kids are PROBABLY going to college, but they are some of the lucky ones. Even if they finish their degrees, I constantly think about whether or not they can sustain the pressures of holding a job. Last week at a disability claim filing seminar I attended, one lady there who works in a community agency says she deals with aspies all the time who have their university education, but have a work history of losing jobs every three to six months.
I had been thinking about how I should look into treatment protocols for my six year old aspie since his older brother had an unsual (as if there's a "usual") treatment for autism that had very beneficial results. But since aspie the third has never been vaccinated, I have a feeling that I need to do more research on what will be appropriate for him. Well, I tell you, I need the cliff notes version. Honest to god, unless you are a scientist or a person of significantly above average intelligence or unlimited energy, the pool of technical data to swim through is going to require a lifeguard's certification. I love my kid, but holy crap I need a brain transplant. I mean, what does the common person do? So many of the blogs I read from autism parents are authors with degrees in law or medicine or freaking investigative journalism. They all seem to have many initials that go after their names. I have a scrawny little B.S. from a publicly funded school that is located in a state that is not known to be at the top of the intellectual hierarchy, and I am not a highly motivated self taught kinda gal. I truly believe my brain has atrophied since college days despite the almost constant stimulation it gets.
Hannah Poling, the one child with autism that has thus far been awarded damages for a link between her diagnosis of autism and a reaction to vaccines is the child of a nurse and a neurologist. I just don't have that fight in me. And yes, some financial support (say, a little bit of social security funds) would be nice since there isn't a lot of money involved at being the stay at home mom of three children with developmental disabilities, although there are lots of costs, but I would be happy to settle for some insurance coverage of treatments to improve their quality of life. If I could understand, and decide on, said treatment, that is. Lordy, looks like I need to go back to medical school. I don't even have the brain power to understand it, much less to get accepted.
Not all people are created equal. We just have a higher chance of being able to apply our brains to good use if we're born with one. Or don't fry it along the way.
Sunday, September 21, 2008
I rant in all my posts, but this time on purpose
I am ticked off tonight. As a newbie, I have been trying to learn about the process so that I can blog with the proper etiquette, and I have to say that my personality doesn't fit in very well with the category of my blog which I've come to find out is called "mommyblogging." Whatever. Not too incredibly insulting. There's nothing this society needs more than another label that marginalizes motherhood. We do that just fine without a new label. I have been reading a lot of other blogs in order to figure out how to improve my own, but I just can't seem to give a dang about some soccer mom's snit over how the coach doesn't model sportmanship appropriately for the little minds he's molding. It's all I can do not to use four letter words when I speak or write, I can't work up a sweat about the minor imperfections of your comfortable middle class existence. Not that I don't totally envy your comfortable middle class existence, my hypocrisy is thoroughly consistent. Well it's their blog, they can write whatever they want.
But freedom of speech is getting on my damn nerves. I am so sick of reading about how wrong I am to presume that vaccines have no link with autism. Somebody even had the gall to tell me to my face that I must be wrong when I told them that my son was pretty ok before he had vaccines, and that he had a pretty bad reaction after his shots complete with a quick descent down the spectrum. In fact, this is a common story among parents of children with autism. And even though we all gave our children vaccines on a slightly different schedule, we must ALL BE WRONG, because scientific studies say so. The fact that my son didn't have a diagnosis of autism until well after his fifth birthday when he had a sudden onset of symptoms right after an overload of shots during his "well" check up, I guess that means nothing.
It doesn't come up in conversation very often, but I have had mononucleosis THREE times. Complete with lab tests to prove it. Whenever I have to see a new doctor, and they ask for medical history, I almost hate to tell them, because I already know that my credibility with them is going to take a nose dive. Do you know how many of them have told me it's impossible to get mono more than once? So I guess I'm lying. I guess there's no way that the previously held belief could be faulty, it must be ME. Next you can tell me that there's no such thing as chronic fatigue immune deficiency syndrome. Maybe you could follow that up with a comment on how we shouldn't worry about AIDS spreading to epidemic proportions. And all of us parents who have given our children vaccinations, who thought it would be a good thing, who held no previous prejudice against the danger of vaccines, and then watched our children react and then deteriorate immediately after, I guess it must just be a mass hallucination.
There couldn't possibly be an error in the testing process. I'm sure the fact that there is very little incentive for someone to make that discovery has nothing to do with the fact that it hasn't been found. I don't doubt that it's difficult to establish the mechanism by which vaccines lead to exacerbated symptoms of autism. I'm sure it's a very circuitous path. And I'm sure it isn't the only catalyst in our environment with that capability. But don't tell me that there aren't major forces with a deep interest in making sure that path is never discovered. I guess I'm just supposed to overlook the fact that government agencies, pharmaceutical companies, and pediatricians are all collaborating to convince us to vaccinate and making huge profits from the vaccination process. I was just sitting here trying to think who has a better funded lobby than the pharmaceutical companies. Maybe munitions companies, I don't know. But no one can tell me that they don't have an enormous vested interest in making sure that no scientific connection is ever made between vaccinations and autism.
Hey, guess what, I forgive you. I don't want your frigging money, I just want to know the best way to help my son, thank you. I will go on record here and thank Dr. Michael Goldberg in Tarzana and his not incredibly difficult or expensive protocol for not only stopping a downward spiral but for bringing my son back from the depths of illness. Thank god he decided to treat children as though they've had a major attack on their neuro immune system, and didn't bother to try to convince me that it didn't happen. And guess what? He still believes in vaccinating the kids in his practice, but he actually cares for the ones who have reactions. I am not telling or advocating for anyone NOT to vaccinate their kids, but STOP telling me that what I witnessed with my own two eyes must not be true. I don't wish disability on their kids, but I sure wish they would stop trying to assure me that I must be wrong about mine just because their kids didn't get autism after their vaccines. Yes, I know, some kids have autism that has nothing to do with vaccines. Next they will tell me that cigarettes don't cause lung cancer, because their grandpa smoked his whole life and he never got lung cancer. And someone else had lung cancer that never smoked. But cigarettes still cause lung cancer whether or not someone says they don't.
And what is this politically correct crap about not trying to cure autism? Does anybody really think the kids wouldn't want to get rid of the challenges that they have if they could? If anybody ever came up with a cure for Down Sydrome, is it really unlikely that the parents of those kids wouldn't want to use it? Ok, we are talking about a chromosonal problem in the case of Down Syndrome, and I don't think we are going to see a cure in my lifetime. But there are many organic brain dysfunctions and head injuries for which huge improvements are possible if not cures, and for pete's sake, why not try them? If you're not suffering, fine, don't do it, but let the ones who are suffering try for the cure with your support. Don't try to convince them that they should just be proud of being differently abled. I'm proud of my son everyday, but I would give him any treatment in a New York minute that I thought would help his life not be quite so difficult.
I had a mini stroke last year, and I have been working my butt off to return my level of functioning to the same state before that day, I consider it my OBLIGATION. And it's something I fervently desire. No, there is no shame in disability, but why wouldn't I want to reach my maximum potential if at all possible? Chronic fatigue, AIDS, and autism are only some of the disabilities reaching epidemic proportions. If we keep it coming, pretty soon we will have one person working and paying taxes for every school age child combined with the population of persons receiving social security or public assistance. How can our economy possible sustain that formula even if we want to?
Ok, I need to step down for awhile and cool off. But before I do, here are three of my favorite books which are relevant to tonight's post. I didn't create my blog to market books, but these were really interesting and helpful.
And the Band Played On: Politics, People, and the AIDS Epidemic, by Randy Shilts
Osler's web: Inside the labyrinth of the chronic fatigue syndrome epidemic, by Hillary Johnson
Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery, by Karyn Seroussi
But freedom of speech is getting on my damn nerves. I am so sick of reading about how wrong I am to presume that vaccines have no link with autism. Somebody even had the gall to tell me to my face that I must be wrong when I told them that my son was pretty ok before he had vaccines, and that he had a pretty bad reaction after his shots complete with a quick descent down the spectrum. In fact, this is a common story among parents of children with autism. And even though we all gave our children vaccines on a slightly different schedule, we must ALL BE WRONG, because scientific studies say so. The fact that my son didn't have a diagnosis of autism until well after his fifth birthday when he had a sudden onset of symptoms right after an overload of shots during his "well" check up, I guess that means nothing.
It doesn't come up in conversation very often, but I have had mononucleosis THREE times. Complete with lab tests to prove it. Whenever I have to see a new doctor, and they ask for medical history, I almost hate to tell them, because I already know that my credibility with them is going to take a nose dive. Do you know how many of them have told me it's impossible to get mono more than once? So I guess I'm lying. I guess there's no way that the previously held belief could be faulty, it must be ME. Next you can tell me that there's no such thing as chronic fatigue immune deficiency syndrome. Maybe you could follow that up with a comment on how we shouldn't worry about AIDS spreading to epidemic proportions. And all of us parents who have given our children vaccinations, who thought it would be a good thing, who held no previous prejudice against the danger of vaccines, and then watched our children react and then deteriorate immediately after, I guess it must just be a mass hallucination.
There couldn't possibly be an error in the testing process. I'm sure the fact that there is very little incentive for someone to make that discovery has nothing to do with the fact that it hasn't been found. I don't doubt that it's difficult to establish the mechanism by which vaccines lead to exacerbated symptoms of autism. I'm sure it's a very circuitous path. And I'm sure it isn't the only catalyst in our environment with that capability. But don't tell me that there aren't major forces with a deep interest in making sure that path is never discovered. I guess I'm just supposed to overlook the fact that government agencies, pharmaceutical companies, and pediatricians are all collaborating to convince us to vaccinate and making huge profits from the vaccination process. I was just sitting here trying to think who has a better funded lobby than the pharmaceutical companies. Maybe munitions companies, I don't know. But no one can tell me that they don't have an enormous vested interest in making sure that no scientific connection is ever made between vaccinations and autism.
Hey, guess what, I forgive you. I don't want your frigging money, I just want to know the best way to help my son, thank you. I will go on record here and thank Dr. Michael Goldberg in Tarzana and his not incredibly difficult or expensive protocol for not only stopping a downward spiral but for bringing my son back from the depths of illness. Thank god he decided to treat children as though they've had a major attack on their neuro immune system, and didn't bother to try to convince me that it didn't happen. And guess what? He still believes in vaccinating the kids in his practice, but he actually cares for the ones who have reactions. I am not telling or advocating for anyone NOT to vaccinate their kids, but STOP telling me that what I witnessed with my own two eyes must not be true. I don't wish disability on their kids, but I sure wish they would stop trying to assure me that I must be wrong about mine just because their kids didn't get autism after their vaccines. Yes, I know, some kids have autism that has nothing to do with vaccines. Next they will tell me that cigarettes don't cause lung cancer, because their grandpa smoked his whole life and he never got lung cancer. And someone else had lung cancer that never smoked. But cigarettes still cause lung cancer whether or not someone says they don't.
And what is this politically correct crap about not trying to cure autism? Does anybody really think the kids wouldn't want to get rid of the challenges that they have if they could? If anybody ever came up with a cure for Down Sydrome, is it really unlikely that the parents of those kids wouldn't want to use it? Ok, we are talking about a chromosonal problem in the case of Down Syndrome, and I don't think we are going to see a cure in my lifetime. But there are many organic brain dysfunctions and head injuries for which huge improvements are possible if not cures, and for pete's sake, why not try them? If you're not suffering, fine, don't do it, but let the ones who are suffering try for the cure with your support. Don't try to convince them that they should just be proud of being differently abled. I'm proud of my son everyday, but I would give him any treatment in a New York minute that I thought would help his life not be quite so difficult.
I had a mini stroke last year, and I have been working my butt off to return my level of functioning to the same state before that day, I consider it my OBLIGATION. And it's something I fervently desire. No, there is no shame in disability, but why wouldn't I want to reach my maximum potential if at all possible? Chronic fatigue, AIDS, and autism are only some of the disabilities reaching epidemic proportions. If we keep it coming, pretty soon we will have one person working and paying taxes for every school age child combined with the population of persons receiving social security or public assistance. How can our economy possible sustain that formula even if we want to?
Ok, I need to step down for awhile and cool off. But before I do, here are three of my favorite books which are relevant to tonight's post. I didn't create my blog to market books, but these were really interesting and helpful.
And the Band Played On: Politics, People, and the AIDS Epidemic, by Randy Shilts
Osler's web: Inside the labyrinth of the chronic fatigue syndrome epidemic, by Hillary Johnson
Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery, by Karyn Seroussi
Tuesday, September 2, 2008
The End and The Beginning
The summer is over. On the last day, my dad took me to the movies to see the Dark Knight. I never get any time alone with my dad anymore, so that was fun. AND I got to go out somewhere WITHOUT my little brother; that was even more fun. It was really good because we never go to the theatre anymore, they are far from where we live and they are very expensive. Usually we rent videos because it's easier to handle my little brother in the house. The movie was really good, one of the greatest of all time. I don't have any trouble staying still like I used to, as long as I'm entertained. If I'm not occupied while I'm sitting down, I'll get back up and pace around and be annoying. For those three hours it was really peaceful. I like having everything peaceful. I often feel cooped up in our little house, even though I know I should get out more, I don't feel like going outside. And I hate car rides.
Today was the first day of school. Some special arrangements were made so that I could have more years at school and less classes during each semester. Now I don't have so much work to do, my mom said I used to put in sixty hours a week. It felt like labor camp. I now have German class, which makes me very happy. I'm really excited about that. I also have the second level of Spanish, an Algebra math class, college prep composition, and a Career class. I'm dreading coming across something really hard, because I know it will eventually happen, but at least I will have more free time this year. The schedule seems very liberal. The best part is that I will have more time for myself, so I can do my own drawing, video gaming, internet surfing etc.
I have a resource teacher this year to help me, and I need all the help I can get. I'm not quite sure how it works. I never thought of asking for help before, whenever I want something done, it never occurs to me to do anything but do it myself. I feel a bit optimistic this year. The other years, I dreaded it. I feel like it will go fine. My mom is looking for a part time on site program for me, and it sounds interesting. I don't know if it will happen this year though. Cyber school is great. Home schooling is good, but it's frowned upon by a lot of people. Cyber school is frowned upon by a lot of the same people too. But if anybody is lucky enough to be cyber schooled, they should keep it. Traditional schools, some are ok, but the others: disaster awaits.
Today was the first day of school. Some special arrangements were made so that I could have more years at school and less classes during each semester. Now I don't have so much work to do, my mom said I used to put in sixty hours a week. It felt like labor camp. I now have German class, which makes me very happy. I'm really excited about that. I also have the second level of Spanish, an Algebra math class, college prep composition, and a Career class. I'm dreading coming across something really hard, because I know it will eventually happen, but at least I will have more free time this year. The schedule seems very liberal. The best part is that I will have more time for myself, so I can do my own drawing, video gaming, internet surfing etc.
I have a resource teacher this year to help me, and I need all the help I can get. I'm not quite sure how it works. I never thought of asking for help before, whenever I want something done, it never occurs to me to do anything but do it myself. I feel a bit optimistic this year. The other years, I dreaded it. I feel like it will go fine. My mom is looking for a part time on site program for me, and it sounds interesting. I don't know if it will happen this year though. Cyber school is great. Home schooling is good, but it's frowned upon by a lot of people. Cyber school is frowned upon by a lot of the same people too. But if anybody is lucky enough to be cyber schooled, they should keep it. Traditional schools, some are ok, but the others: disaster awaits.
Monday, September 1, 2008
asperger education
Tommorrow my 15 year old aspie starts high school. A year ago he had his first ever evaluation by a school psychologist, and three months ago we had his first ever IEP meeting. Despite problems he had after enrolling in cyber school three years ago, no evaluation was offerred. The special ed director actually told me to attempt accessing therapeutic services through our private health insurance. It took two years of the poor boy working sixty hours a week before I made a big enough stink that they agreed to the evaluation. It was even longer before he got the initial evaluation. I didn't understand our rights, or anything about how the system worked. Honestly, it didn't occur to me that my high functioning boy was entitled to special ed services, including at the very least, a very thorough evaluation. We STILL haven't had that, but at least now I know what I'm looking for.
T's most obvious deficit was in the area of written expression, and even though it took awhile, after three years he has now been assigned a resource teacher to help him with his writing assignments. But we are now running out of time. He needs so much more than help with his writing; there are social skills to work on now that we won't be spending sixty hours a week trying to keep up with academics. There is an important transition to adulthood that is starting to be the top priority on my list. When he finally had his IEP meeting at the end of last school year, I was encouraged that his team included a "transitions" counselor. I didn't know that such a thing existed. But I'm learning.
One thing about the IEP meeting that was a little disheartening was the fact that his newly assigned resource teacher was obviously about to go out on maternity leave. And sure enough, when his new guidance counselor left me a message a few days later to tell me what T's new class schedule would be for the fall, it was all too obvious that the resource teacher had not coordinated any exchange of information with guidance regarding the provisions of the IEP. Not only that, when I tried to contact the guidance counselor later in the summer when I felt sure that he would be returning to the school, I found out that he was reassigned, and at present there is NO guidance counselor for freshman. So knowing that the resource teacher was still out on leave, I called the special ed director and asked for her to please make sure that T's new guidance counselor, whoever that might be, would be sure to take into consideration the IEP provisions which would impact the new roster of classes.
Almost a full week later, I got a voice mail from the resource teacher telling me that she would still be assigned to T, but that she would be working from home until mid November. My heart sank. Although I thought kudo's were owed to the school for consideration to working mothers, I knew from previous experience that reaching their part time special ed coordinator who worked from home also was almost an impossibility. But then things started looking up; an assistant from the guidance department told me that the resource teacher had completely changed T's schedule around, taking into consideration the IEP provisions, and the resource teacher herself returned my phone call promptly, and with babies wailing in the background, had a fruitful conversation with me about T's needs and his new roster of classes. Pulled out at the zero hour, to be sure, since school starts TOMMORROW, and this conversation only took place two days ago, but hey, it's a semi good sign if nothing else. T is actually feeling optimistic about it, and that is a big relief for me.
On a I-don't-know-if-it's-a-good-or-bad-thing note, T was not accepted into the gifted program. They don't tell you the reason why, but I'm hoping that once we get past the beginning of the school year, the director there will be willing to give me some good insight. I had so many doubts about the program that I wasn't upset when we got the rejection letter. I knew at least that he had been very seriously considered. The deal breaker for me was the three day on site component with a long commute. I would have been willing to kill myself for two days, but three would have been very very hard on T (and me), and I wasn't even sure it was really the best fit. I found out that they don't have an arts or music program, and I think T's destiny lies with media arts. He really has told me consistently for the last couple of years that he wants to be creative, and I'm not sure that potential would have been tapped at the gifted program. I am currently contemplating three other programs that might be more appropriate.
One of these programs under serious consideration is attached to his cyber school: a performing arts division. Fortunately this is only two days a week, and is very focused in professional arts. I'm still not sure that it's the best fit, but I will take a close look at it. One nice aspect of T's new IEP is that he will get six years to complete high school instead of four if he wants, and this buys us some extra time to participate in high school programs that might really help him with job skills. We are also definitely looking into a new technical school built nearby that has a computer certified program similar to what T's daddy completed. Since I think computer skills will be so essential to a career in media arts, I feel more certain that this would be a really good fit. And it's only two hours per day, five days a week, short drive, in the afternoons - perfection.
However, it will all depend on the staff there and the accommodations, and how closely they supervise and discipline the other students. One thing for sure I knew about the gifted program, and the performing arts program as well, is that they would both contain exceedingly positive social experiences, as discipline and expectations are both high. This new school serves the five public school districts nearest to where we live, and as such, I am concerned seriously if the discipline standards will be as lax there as they are in the five districts, plus other technical schools available in the county. The other technical schools in the county would be the third option we should check out, unless I want to go the private school route. I have been told repeatedly by our current school's administrators that autistic kids belong in special programs at private schools (far away) that should be paid for by our district of residence. These people hadn't even met T. I didn't trust what they said, and decided on a watchful wait strategy. Sure enough, last March at the open house, I met another teenage boy with aspergers, and his mother, and if anything, he was less high functioning than T, or at least somewhere around the same. An extremely bright kid with lesser discernment as regards to social skills when compared with T. I wish they lived nearby so we could hang with them.
I figured if HE had a decent IEP and was thriving at the school, then why the H should I switch T over to a private school with a long hours and long commute that he would probably hate? Admittedly, since then I have found some private schools specializing in autism that are much closer by, so I would reconsider my stance. But I sure wouldn't let some people who had never even met T tell me what was best for him. One of these same people later told me that he thought I was asking for way more accommodation that T needed. Well which is it, dude? Either T needs to be in a private school, or he's not that needy. Either way, the message is not to subtle; We Do Not Want To Deal With Your Kid's Needs At Our School. Well tough, they had warning when we first came in, and I'm not making T change schools just because THEY don't want to live up to their obligations. TOO FREAKING BAD.
That is all for today. I will post on how the first week with the new IEP goes.
T's most obvious deficit was in the area of written expression, and even though it took awhile, after three years he has now been assigned a resource teacher to help him with his writing assignments. But we are now running out of time. He needs so much more than help with his writing; there are social skills to work on now that we won't be spending sixty hours a week trying to keep up with academics. There is an important transition to adulthood that is starting to be the top priority on my list. When he finally had his IEP meeting at the end of last school year, I was encouraged that his team included a "transitions" counselor. I didn't know that such a thing existed. But I'm learning.
One thing about the IEP meeting that was a little disheartening was the fact that his newly assigned resource teacher was obviously about to go out on maternity leave. And sure enough, when his new guidance counselor left me a message a few days later to tell me what T's new class schedule would be for the fall, it was all too obvious that the resource teacher had not coordinated any exchange of information with guidance regarding the provisions of the IEP. Not only that, when I tried to contact the guidance counselor later in the summer when I felt sure that he would be returning to the school, I found out that he was reassigned, and at present there is NO guidance counselor for freshman. So knowing that the resource teacher was still out on leave, I called the special ed director and asked for her to please make sure that T's new guidance counselor, whoever that might be, would be sure to take into consideration the IEP provisions which would impact the new roster of classes.
Almost a full week later, I got a voice mail from the resource teacher telling me that she would still be assigned to T, but that she would be working from home until mid November. My heart sank. Although I thought kudo's were owed to the school for consideration to working mothers, I knew from previous experience that reaching their part time special ed coordinator who worked from home also was almost an impossibility. But then things started looking up; an assistant from the guidance department told me that the resource teacher had completely changed T's schedule around, taking into consideration the IEP provisions, and the resource teacher herself returned my phone call promptly, and with babies wailing in the background, had a fruitful conversation with me about T's needs and his new roster of classes. Pulled out at the zero hour, to be sure, since school starts TOMMORROW, and this conversation only took place two days ago, but hey, it's a semi good sign if nothing else. T is actually feeling optimistic about it, and that is a big relief for me.
On a I-don't-know-if-it's-a-good-or-bad-thing note, T was not accepted into the gifted program. They don't tell you the reason why, but I'm hoping that once we get past the beginning of the school year, the director there will be willing to give me some good insight. I had so many doubts about the program that I wasn't upset when we got the rejection letter. I knew at least that he had been very seriously considered. The deal breaker for me was the three day on site component with a long commute. I would have been willing to kill myself for two days, but three would have been very very hard on T (and me), and I wasn't even sure it was really the best fit. I found out that they don't have an arts or music program, and I think T's destiny lies with media arts. He really has told me consistently for the last couple of years that he wants to be creative, and I'm not sure that potential would have been tapped at the gifted program. I am currently contemplating three other programs that might be more appropriate.
One of these programs under serious consideration is attached to his cyber school: a performing arts division. Fortunately this is only two days a week, and is very focused in professional arts. I'm still not sure that it's the best fit, but I will take a close look at it. One nice aspect of T's new IEP is that he will get six years to complete high school instead of four if he wants, and this buys us some extra time to participate in high school programs that might really help him with job skills. We are also definitely looking into a new technical school built nearby that has a computer certified program similar to what T's daddy completed. Since I think computer skills will be so essential to a career in media arts, I feel more certain that this would be a really good fit. And it's only two hours per day, five days a week, short drive, in the afternoons - perfection.
However, it will all depend on the staff there and the accommodations, and how closely they supervise and discipline the other students. One thing for sure I knew about the gifted program, and the performing arts program as well, is that they would both contain exceedingly positive social experiences, as discipline and expectations are both high. This new school serves the five public school districts nearest to where we live, and as such, I am concerned seriously if the discipline standards will be as lax there as they are in the five districts, plus other technical schools available in the county. The other technical schools in the county would be the third option we should check out, unless I want to go the private school route. I have been told repeatedly by our current school's administrators that autistic kids belong in special programs at private schools (far away) that should be paid for by our district of residence. These people hadn't even met T. I didn't trust what they said, and decided on a watchful wait strategy. Sure enough, last March at the open house, I met another teenage boy with aspergers, and his mother, and if anything, he was less high functioning than T, or at least somewhere around the same. An extremely bright kid with lesser discernment as regards to social skills when compared with T. I wish they lived nearby so we could hang with them.
I figured if HE had a decent IEP and was thriving at the school, then why the H should I switch T over to a private school with a long hours and long commute that he would probably hate? Admittedly, since then I have found some private schools specializing in autism that are much closer by, so I would reconsider my stance. But I sure wouldn't let some people who had never even met T tell me what was best for him. One of these same people later told me that he thought I was asking for way more accommodation that T needed. Well which is it, dude? Either T needs to be in a private school, or he's not that needy. Either way, the message is not to subtle; We Do Not Want To Deal With Your Kid's Needs At Our School. Well tough, they had warning when we first came in, and I'm not making T change schools just because THEY don't want to live up to their obligations. TOO FREAKING BAD.
That is all for today. I will post on how the first week with the new IEP goes.
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