Ok, this is something innocuous while I continue to contemplate the future of my blog. One of my dumbass young "friends" on myspace sent me this awhile ago, and I might as well do SOMETHING while I'm still considering heavy stuff. Thanks for the push, Torina. I have asked three people their advice/opinions, and all three were kind enough to send me a response, and I still need to ponder awhile more. But in the meantime.....
personal history survey
place of birth?
Near Philadelphia. Who cares? Freaking identity theft stalkers, that's who.
what is your first conscious memory?
Jumping on my parents' bed while my dad was reading a newspaper on the toilet in the bathroom on the otherside of the room with the door open. When I told him about this a long time ago, he insists he couldn't have been USING the toilet, was probably just escaping the coffee klatch mom had in the living room. Knowing him, I believe it. Mr. Anal Retentive wouldn't have actually used a bathroom with a witness present, he would have locked the door.
state of your parents’ union?
Well, they were married when I was born, although it was the second time they had married each other. Gluttons for punishment I think.
remember anything about your first home?
Well, I was there for fourteen freaking years, so I say yes. It was a rancher on an acre of land with the house perched on a hilltop that made for GREAT sledding. Too bad I can't stand the freaking snow now.
did you have pets as a child?
A succession of dogs. The first I loved and was hit by the jackass neighbor's car who went five million miles per hour in an extremely residential dead end street. It could have easily been one of us kids instead. We mourned the dog horribly. Then got two more. All three had several litters of puppies (we were bad environmentalists then. Well worse, anyway).
biggest hobby?
Um, does reading count? I was a serious bibliophile at a very young age. I climbed trees a great deal.
music or sports?
both I guess. I loved the piano, but didn't take real lessons until like um eleven? twelve? I loved riding my bike, but I wasn't much for team sports. or teams. oo, wait, ping pong fanatic. WAY back in the day.
childhood bullies?
Yeah, Kurt at the top of the hill. Probably picked on me because my older brothers kicked his ass on several memorable occasions. I'm sure he's a cool adult now. There were others at school too, but I forget. I think the girls were scarier than the boys.
favorite childhood book?
probably the Ramona the Pest series. There were so many. Madeleine L'Engle when I was a little older.
first best friend?
Still is!! Lisa the Great. Lived across the street. Knew me in utero. Hardly get to see her now that I moved to the sticks. Bad me.
favorite elementary school teacher and subject?
My kindergarten teacher sticks in my mind as the kindest/sweetest, Mrs Rice. I think I know all the rest - Kinderman, Hallman, Walters, Feist, Gradwell, um, Swa-something. Favorite subject back then - probably reading. Getting to go to the library. Hated gym, was picked on too much. Failed math, I think.
best subject in high school?
Language arts? Math? I can tell you what I LIKED the most: ceramics. Didn't like gym still, but was excused by extremely sensitive laid back track guy who let me and a friend go work out with the football team in the weight room everyday. Somebody tell me WHY I found THAT less traumatizing?
extracurricular?
Was not a band twinkie, or cheerleader, or any crap like that. Was actually kind of antisocial. Started joining clubs my second year of HS for purposes of plumping transcript for college admission in order to get the h out of my household. Admissions application question: why do you want to go to our school? Truthful answer: must escape insane parents NOW. YOUR school has nothing to do with it.
first dance?
Don't think I ever did. No wait, does two proms count? Don't believe we did any dancing though.
first date?
not quite remembering. Probably with first real boyfriend.
first kiss?
With boy named David at Junior Achievement conference in San Francisco. I had gum in my mouth. He stuck his tongue in it. Oops.
when did you first get a driver’s license?
I think eighteen. I was TERRIFIED to drive. Might have been permit at sixteen, license at seventeen, didn't drive until eighteen.
first car was?
a blue 1981 Chevette, manual drive. Boy was that fun my first time on the freeway, during rush hour, in Los Angeles.
at what age did you have your first significant romantic relationship?
I see where this is leading, and I'm going to delete the next question. But anyway, I was fifteen and had a steady boyfriend that I dated for two and a half years. He was awesome. It made high school more bearable.
biggest trouble you got into during HS (or earlier?)
Probably when I was in the woods with my brother and his friends who were smoking pot. I wanted to come along for the walk. We went behind a church (stupid idiots) and they called the cops. We ran like hell, and they didn't catch us. Once I sat in the car while some of my friends T.P'd somebody's parents' house that they were pissed at. Also, I borrowed a key from one of the ladies in the admin office and went into the Dean's office right before there was a big standardized test administered. Holy hell broke loose that I might have compromised the whole school. I almost pissed my pants and came close to getting an ulcer. I sobbed in a bathroom for a half hour. And once my parents came home while my boyfriend was over at night(no, he wasn't supposed to be there) and I had to shoo him out the back door before they came in the front. I can't pick just one.
did you take a college entrance exam, and do you still remember the scores?
I know I took the SAT's, and my scores were 530 english (which shocked me b/c it was low) and 690 math (which shocked me b/c it was high). This was back when a perfect score in each was 800. Now I think they are 1200 in each category. I also took the Achievement tests? The scores were similar, I think.
class rank?
OMG, I have no idea. It was in the top ten percent. Possibly top five. What difference does that make if you have a low population in your particular class or if they are a big bunch of losers? it doesn't proove anything. There were almost 500 seniors the year I graduated, which was back in the dark ages.
H.S. diploma/College degree?
Yes and yes. Graduated high school at sixteen, didn't graduate college until 23. Just a bachelor's though. Grad school is not permanently out of reach.
first time you moved away from home, and RUNNING away doesn’t count…
I started college at sixteen, just a couple months before I turned seventeen, and I moved into the dorms. I did NOT rush a soroirity.
first job?
Sales Associate at a then major department store which since went out of business forever even though they had been around since 76 trombones led the big parade....
most interesting job?
probably working in the "skin shop." It was a talent agency for strippers and clowns and other party entertainment.
first deliberate career/field choice?
well I majored in human resources management for a reason. That's where I ended up. I should have majored in social work or nursing instead. But I don't regret it.
first baby/child?
I popped one out at 26. I had an early miscarriage two years before. It still depresses me.
first husband?
Strangely enough, I managed to get married BEFORE I got pregnant! Only dumb luck though. Let's see, I was 23, he was 26. We've been together, including our first date, for 21 years.
Probably I covered this stuff in my "Fifty things about me" other blog, or should have just added it there. And who is the bigger dumbass, the one who fills out this survey, or the one who copies the survey from the first dumbass, insults said dumbass, and then proceeds to fill out the survey herself? Oy.
Saturday, January 24, 2009
Saturday, January 3, 2009
What’s my point; not sure I have one.
With the advent of the new year, and having now been on blogger for the last six months or so, I am now giving more serious consideration to going public, but I just don’t feel sure about it. There are three main issues I’m thinking about:
1. I’m boring. And that’s the truth. I thought I would discuss aspects of the kid’s lives on a more regular basis; i.e. what symptoms of autism and other developmental disabilities are like, how they impact our daily routines and family life. That was supposed to kill two birds with one stone: to raise autism/disability awareness, and to let our extended family and friends keep up with us a little more. I know the grandparents are really missing out, and yet I feel like I’m not writing for them even though that was my intention. I don’t post near enough, and at the end of the day, even though there are lots of things that happen that they might find interesting, I’m just so tired. What inspires my get-up-and-go is when I feel passionately about some social issue, like prop 8 (which I deleted already, don’t bother trying to find it, I used too many four letter words), not the mundane details of our banal existence. And I am often inspired by things that really tick me off. I mean, who wants to read that stuff? What a total downer. I should try for shorter (HA!) more frequent posts. I just don’t find myself having the self discipline or energy to do it. Plus I guess that I don’t think I can be horribly entertaining with short frequent posts. Sigh. Our insecurities always undo us.
2. My skills. I thought after six months or so, I would absorb the ups and downs, ins and outs of the technology. WRONG. I have read a lot of other people’s blogs, I have looked at a lot of neat widgets, I have spent a lot of time studying blog “etiquette,” but I don’t think my education in this area is near enough. I would think there is a way to remedy this, like maybe I need to investigate formal (or even informal) training on the subject. There is a certain irony in that I originally was a computer science major at the university, a programmer, to be exact. And now I don’t have a clue. I expected that my reasonable intelligence level would eventually overcome this obstacle, but, not yet. Work in progress, I guess. I am reasonably insecure about my writing skills too, but I don’t give a rat’s butt about that. I have blogging friends and family members who are way more talented than I am, but this is not a talent contest, and I have just as much value and contribution to make. I just wish I knew what the hell I was doing with the technology.
3. PRIVACY. This is an issue in so many different ways for not only me, but my family members, and even third parties. If I’m going to be asserting my opinion in cyber space, do I have a right to keep some of my privacy? If I was writing a newspaper column (a renegade one no less, on a flyer jammed into the middle of the newsprint pages), do I have a reasonable expectation of privacy? I feel like public blogging opens me up to criticism I’m not ready to deal with. There seems to be a definite death of manners and common courtesy on the internet. How much of it can I take? My content of late has rather than personal instead been about my relatively uneducated opinion on certain autism and other social issues. Even then, I think to myself, “who am I to have a written public opinion on Terri Schiavo? Hasn’t her family been through enough pain than to suffer the careless treatment of strangers discussing her situation as water cooler fodder? True, I am arguing in their favor, but it’s not like they asked me.”
I don’t think I realized how insecure I was until I started writing this blog. I can visualize back to junior high school when those kind of feelings reached peak levels, and I think what I feel now is so miniscule in comparison, so as to be virtually disappeared. Perhaps cyber space now is the new frontier of peer pressure and social oversensitivity. The kind of cyber bullying I have witnessed has been excruciating to see.
And then if I’m going to have an opinion, and presumably come under attack, don’t I need to be afraid of the weirdoes coming out of the woodwork? I have small (and large), vulnerable children, and we are out and about in our community. Besides being afraid for their safety, how about their rights to privacy? For instance, I would love to talk about OCD girl more. I think awareness on that topic is very low. But she is horribly self conscious. Even if I’m not concerned about stranger danger, how about keeping the details of her personal life private from family members and friends?
This has been a problem for us in places like church and school. She needed help, but how to ask for it if she doesn’t want anyone to know what the problem is? Thank goodness my son is a little less self conscious, he needs an awful lot of help, and the only way he is going to get it is by being as visible and assertive as possible. He LIKES wearing his autism shirt, because in the absence of a visible cue (such as a cast on a broken limb or leg braces or the physical characteristics of Down’s syndrome), he doesn’t have to try to explain himself quite so much. I fear DD will have a very circumscribed life because the only thing more hindering than her disability is her desire that no one know about it to the point where she can’t work on it and start to get past it.
Also, there have even been times when I wanted to talk about something in my struggle with the kids and I feel like I can’t talk about casual acquaintances or friends and other family members unless I remain semi anonymous or even totally anonymous. I had an absolutely horrific conversation with a staff member of an institution from where I was trying to get services for one of my kids, and even though this other person doesn’t like me and said rotten things, I still felt like out of respect for her privacy that I shouldn’t repeat the details of the conversation, not to mention worrying about retribution against my child in the form of a lack of cooperation from this person in the future. Yet it was an important step in my journey, the relating of which is supposed to be one of my goals in blogging.
My own growth and path is so closely connected with so many other people that I don’t know how to discuss it and leave them their privacy. One thing I found very helpful was reading the description of the relationships between other wives and their asperger’s husbands, it’s a virtual support group. And if I was to come out of the blogging closet, I would be revealing very intimate details on the relationship between my husband and me (who is, by the way, a very fabulous guy). He is generally very supportive, but what if he doesn’t feel like sharing his personal struggles with the World Wide Web? And suppose his co workers or other professional peers were to stumble across my blog? I have already deleted one post that I wrote around our wedding anniversary this year; it disclosed what may have been some important information for someone else needing empathy in a similar situation. It would have definitely been progress towards my goal of spreading autism awareness. But do I have the right, even with his blessing? I would love to write tributes to all of my parents, and some other mentors, but in order to do so, will I have to completely whitewash everything? If I don’t include the bad with the good, how useful will it be? I just have not been able to reconcile those questions yet; I guess it’s time to perhaps ask some experienced bloggers for their opinions.
1. I’m boring. And that’s the truth. I thought I would discuss aspects of the kid’s lives on a more regular basis; i.e. what symptoms of autism and other developmental disabilities are like, how they impact our daily routines and family life. That was supposed to kill two birds with one stone: to raise autism/disability awareness, and to let our extended family and friends keep up with us a little more. I know the grandparents are really missing out, and yet I feel like I’m not writing for them even though that was my intention. I don’t post near enough, and at the end of the day, even though there are lots of things that happen that they might find interesting, I’m just so tired. What inspires my get-up-and-go is when I feel passionately about some social issue, like prop 8 (which I deleted already, don’t bother trying to find it, I used too many four letter words), not the mundane details of our banal existence. And I am often inspired by things that really tick me off. I mean, who wants to read that stuff? What a total downer. I should try for shorter (HA!) more frequent posts. I just don’t find myself having the self discipline or energy to do it. Plus I guess that I don’t think I can be horribly entertaining with short frequent posts. Sigh. Our insecurities always undo us.
2. My skills. I thought after six months or so, I would absorb the ups and downs, ins and outs of the technology. WRONG. I have read a lot of other people’s blogs, I have looked at a lot of neat widgets, I have spent a lot of time studying blog “etiquette,” but I don’t think my education in this area is near enough. I would think there is a way to remedy this, like maybe I need to investigate formal (or even informal) training on the subject. There is a certain irony in that I originally was a computer science major at the university, a programmer, to be exact. And now I don’t have a clue. I expected that my reasonable intelligence level would eventually overcome this obstacle, but, not yet. Work in progress, I guess. I am reasonably insecure about my writing skills too, but I don’t give a rat’s butt about that. I have blogging friends and family members who are way more talented than I am, but this is not a talent contest, and I have just as much value and contribution to make. I just wish I knew what the hell I was doing with the technology.
3. PRIVACY. This is an issue in so many different ways for not only me, but my family members, and even third parties. If I’m going to be asserting my opinion in cyber space, do I have a right to keep some of my privacy? If I was writing a newspaper column (a renegade one no less, on a flyer jammed into the middle of the newsprint pages), do I have a reasonable expectation of privacy? I feel like public blogging opens me up to criticism I’m not ready to deal with. There seems to be a definite death of manners and common courtesy on the internet. How much of it can I take? My content of late has rather than personal instead been about my relatively uneducated opinion on certain autism and other social issues. Even then, I think to myself, “who am I to have a written public opinion on Terri Schiavo? Hasn’t her family been through enough pain than to suffer the careless treatment of strangers discussing her situation as water cooler fodder? True, I am arguing in their favor, but it’s not like they asked me.”
I don’t think I realized how insecure I was until I started writing this blog. I can visualize back to junior high school when those kind of feelings reached peak levels, and I think what I feel now is so miniscule in comparison, so as to be virtually disappeared. Perhaps cyber space now is the new frontier of peer pressure and social oversensitivity. The kind of cyber bullying I have witnessed has been excruciating to see.
And then if I’m going to have an opinion, and presumably come under attack, don’t I need to be afraid of the weirdoes coming out of the woodwork? I have small (and large), vulnerable children, and we are out and about in our community. Besides being afraid for their safety, how about their rights to privacy? For instance, I would love to talk about OCD girl more. I think awareness on that topic is very low. But she is horribly self conscious. Even if I’m not concerned about stranger danger, how about keeping the details of her personal life private from family members and friends?
This has been a problem for us in places like church and school. She needed help, but how to ask for it if she doesn’t want anyone to know what the problem is? Thank goodness my son is a little less self conscious, he needs an awful lot of help, and the only way he is going to get it is by being as visible and assertive as possible. He LIKES wearing his autism shirt, because in the absence of a visible cue (such as a cast on a broken limb or leg braces or the physical characteristics of Down’s syndrome), he doesn’t have to try to explain himself quite so much. I fear DD will have a very circumscribed life because the only thing more hindering than her disability is her desire that no one know about it to the point where she can’t work on it and start to get past it.
Also, there have even been times when I wanted to talk about something in my struggle with the kids and I feel like I can’t talk about casual acquaintances or friends and other family members unless I remain semi anonymous or even totally anonymous. I had an absolutely horrific conversation with a staff member of an institution from where I was trying to get services for one of my kids, and even though this other person doesn’t like me and said rotten things, I still felt like out of respect for her privacy that I shouldn’t repeat the details of the conversation, not to mention worrying about retribution against my child in the form of a lack of cooperation from this person in the future. Yet it was an important step in my journey, the relating of which is supposed to be one of my goals in blogging.
My own growth and path is so closely connected with so many other people that I don’t know how to discuss it and leave them their privacy. One thing I found very helpful was reading the description of the relationships between other wives and their asperger’s husbands, it’s a virtual support group. And if I was to come out of the blogging closet, I would be revealing very intimate details on the relationship between my husband and me (who is, by the way, a very fabulous guy). He is generally very supportive, but what if he doesn’t feel like sharing his personal struggles with the World Wide Web? And suppose his co workers or other professional peers were to stumble across my blog? I have already deleted one post that I wrote around our wedding anniversary this year; it disclosed what may have been some important information for someone else needing empathy in a similar situation. It would have definitely been progress towards my goal of spreading autism awareness. But do I have the right, even with his blessing? I would love to write tributes to all of my parents, and some other mentors, but in order to do so, will I have to completely whitewash everything? If I don’t include the bad with the good, how useful will it be? I just have not been able to reconcile those questions yet; I guess it’s time to perhaps ask some experienced bloggers for their opinions.
Wednesday, December 31, 2008
Are my children worthy to take up space?
So continuing with the theme of the last post, I found a new blog of a young adult graduate student with asperger's who recently discussed the issue of genetic prenatal testing and austism. She spoke quite elegantly about how it made her feel to be in a position to have to fight for her right to merely exist. She is pursuing a career in advocacy, and I feel lucky to know that someone like her not only exists, but will be fighting for my children.
I again apologize for my lack of technology skills, but here is a link you can cut and paste if you are interested in reading a very eloquent essay on the subject. My feelings, I fear will be expressed far less so, but my comment is underneath. My apologies to Amy for not asking her permission to track back. I know I will figure out how to do it eventually.
http://minikitkatgirl.blogspot.com/search/label/prenatal%20testing
What a horrifying thought that my two children with AS should not exist. I have to fight hard enough to get appopriate education for them without having also to justify whether they have enough value in this world to be allowed to breathe.
And I am one of the lucky ones. My children will most likely go to college, own property, have families of their own. And while it true that the world would be unlikely tobe able to sustain supporting individuals who weren't eventually self sufficient if their number grew to significant proportions of the population, I believe that is merely a wake up call for us to discover causes and clean up our toxic environments rather than a rush to euthanization of "imperfect" fetuses.
Using that kind of logic, should we consider an age at which all the elderly be euthanized because they are no longer able to care for themselves and may become a burden on their children eventually?
As with Down Syndrome, you can't even know a child's potential until after they are born and well into adulthood, whether they are on the spectrum or neurotypical or have some other kind of disability. Disability also occurs well after birth. I think of smart people that I went to school with who descended into drug addiction never to return as "productive" member of society - yet. Should we ask them to step into giant trash cans?
I am prochoice also, but I can't see that the solution to slowing down the rapidly growing numbers of people of disabilities is encouragement of mass abortions. Research shows that high percentages of women who have abortions are heavily traumatized by the experience for life, and wish they hadn't done it.
We have currently a large population of children on the spectrum in the U.S. who will soon be transitioning into adulthood, and we have failed at developing corresponding transitional adult programs and services that will help them lead productive, meaningful lives. That is OUR failure, not theirs. We also need to be a lot better at providing "appropriate" education so that those who could be self sufficient can be. There is a lot more to helping someone reach independence than just filling their heads with academics.
I guess part of this discussion is why people have children, and what are parents reasonably entitled to. If we advocate reproductive freedom, are we hypocritical to argue against abortions based on genetic testing? Would I have a breaking point personally? Like I know I wouldn't abort a fetus based on DS, but might I consider it for a child who is bound to have a short painful life based on some hideous disease? And since I already know that genetic testing is still horribly flawed, could I bear the knowledge that I might risk making a terribly painful choice in error?
I am already walking a tight rope here, because I decided some time ago NOT to have anymore birth children based on the chance that they might also have some form of autism. I am stretched pretty thin as far as parenting resources as it is, between making the decision to stay at home rather than work since my children need me so much, and my own energy/productivity. I also need to take into account my OWN disability level since the stress of pregnancy on my body and the stress of raising these kids with special needs have taken a heavy toll on my own health. So who am I to tell someone not to abort a fetus based on whether or not genetic testing shows disability?
I guess it's just so hard to hear other people talk about how little value or potential children like my kids have. I dragged my son to his first IEP meeting ever, because staff at his school had already made so many offensive comments to me WITHOUT EVER MEETING HIM in regards to his future. I wanted them to be absolutely unable to deny him his humanity, and I guess I will continue the fight to prevent the rest of society from doing so as well.
I again apologize for my lack of technology skills, but here is a link you can cut and paste if you are interested in reading a very eloquent essay on the subject. My feelings, I fear will be expressed far less so, but my comment is underneath. My apologies to Amy for not asking her permission to track back. I know I will figure out how to do it eventually.
http://minikitkatgirl.blogspot.com/search/label/prenatal%20testing
What a horrifying thought that my two children with AS should not exist. I have to fight hard enough to get appopriate education for them without having also to justify whether they have enough value in this world to be allowed to breathe.
And I am one of the lucky ones. My children will most likely go to college, own property, have families of their own. And while it true that the world would be unlikely tobe able to sustain supporting individuals who weren't eventually self sufficient if their number grew to significant proportions of the population, I believe that is merely a wake up call for us to discover causes and clean up our toxic environments rather than a rush to euthanization of "imperfect" fetuses.
Using that kind of logic, should we consider an age at which all the elderly be euthanized because they are no longer able to care for themselves and may become a burden on their children eventually?
As with Down Syndrome, you can't even know a child's potential until after they are born and well into adulthood, whether they are on the spectrum or neurotypical or have some other kind of disability. Disability also occurs well after birth. I think of smart people that I went to school with who descended into drug addiction never to return as "productive" member of society - yet. Should we ask them to step into giant trash cans?
I am prochoice also, but I can't see that the solution to slowing down the rapidly growing numbers of people of disabilities is encouragement of mass abortions. Research shows that high percentages of women who have abortions are heavily traumatized by the experience for life, and wish they hadn't done it.
We have currently a large population of children on the spectrum in the U.S. who will soon be transitioning into adulthood, and we have failed at developing corresponding transitional adult programs and services that will help them lead productive, meaningful lives. That is OUR failure, not theirs. We also need to be a lot better at providing "appropriate" education so that those who could be self sufficient can be. There is a lot more to helping someone reach independence than just filling their heads with academics.
I guess part of this discussion is why people have children, and what are parents reasonably entitled to. If we advocate reproductive freedom, are we hypocritical to argue against abortions based on genetic testing? Would I have a breaking point personally? Like I know I wouldn't abort a fetus based on DS, but might I consider it for a child who is bound to have a short painful life based on some hideous disease? And since I already know that genetic testing is still horribly flawed, could I bear the knowledge that I might risk making a terribly painful choice in error?
I am already walking a tight rope here, because I decided some time ago NOT to have anymore birth children based on the chance that they might also have some form of autism. I am stretched pretty thin as far as parenting resources as it is, between making the decision to stay at home rather than work since my children need me so much, and my own energy/productivity. I also need to take into account my OWN disability level since the stress of pregnancy on my body and the stress of raising these kids with special needs have taken a heavy toll on my own health. So who am I to tell someone not to abort a fetus based on whether or not genetic testing shows disability?
I guess it's just so hard to hear other people talk about how little value or potential children like my kids have. I dragged my son to his first IEP meeting ever, because staff at his school had already made so many offensive comments to me WITHOUT EVER MEETING HIM in regards to his future. I wanted them to be absolutely unable to deny him his humanity, and I guess I will continue the fight to prevent the rest of society from doing so as well.
Sunday, December 14, 2008
a judge decided Terri Schiavo had no value
One of the reasons, among many, that I'm so grateful that both my autistics sons are so high functioning is that it's hard enough to get services for them without also proving that they are worth it. My children have enough expressive language skills to speak for themselves should anybody try to deny their humanity. But for any parents who have been denied services on the basis that it's not cost effective since their children are too low functioning, couldn't possibly benefit, are essentially not worth it, well, yes, that's the kind of society we live in. Read here about the world's only known deafblind triplets whose parents have worked tirelessly to raise private funds for their education when government services proved highly inadequate: http://www.chron.com/disp/story.mpl/headline/features/4946594.html
There is far too much debate about what constitutes a free, appropriate education. But education is just one aspect of our society through which we are willing to throw away the "lesser" members of our population.
One of my favorite new blogs is written by one of my fellow PA residents, and she wrote a very poignant commentary called Terri Schiavo and Autism, what is the connection. I don't know how to create links yet, but hopefully if you copy and paste you will be able to access the post to read the whole thing if you'd like. Basically, Terri Schiavo had brain damage, and needed help eating and with personal hygiene. She also had lost use of expressive language. She was not in a coma, she was not on life support. Her family of origin wanted to continue to care for her; her husband (who was considered by many to be responsible for her brain injury in the first place) got a court order in order to legally kill her by starving her to death.
http://debstake.wordpress.com/2008/11/20/terri-schiavo-and-autism-what-is-the-connection/
This was my comment:
I meant to say something about this the first time I read it, but was interupted by one of my aspies and forgot about it. But I think you hit the nail right on the head here, it is absolutely terrifying to think that any of us could so easily be disposable if the right circumstances conspire against us. People think this is an isolated incident, but this kind of attitude is used all the time to deny lower functioning autistics any kind of special education services or beneficial therapies. It is viewed as pointless or lacking pay off. Many wonder why so many parents in the autism community are focused on “cure” instead of accepting our children the way they are. WE are the ones who DO accept our children and value them, it’s the rest of the world that is so quick to dismiss our kids.
If we could prove that autism is curable, and enough kids “recover”, as they reach those higher levels of functioning, it is more difficult for the kids to be DISREGARDED. As Terri Schiavo was. What was especially horrifying to me about that specific case was that she had people who loved and cared about her advocating mightily on her behalf, and the government reasoned that it was STILL OK for her to be snuffed. Well if they have no concern about pumping our kids full of poisens that harm them, why should we surprised when they sanction outright murder? With all the reparation programs that we have instituted for slavery, forced sterility victims, and the World War II incarceration of Japanese Americans, you would think that we had reached a more enlightened age. We admitted we were wrong to deny people their civil rights and consider certain groups of people expendable. Guess not.
There is far too much debate about what constitutes a free, appropriate education. But education is just one aspect of our society through which we are willing to throw away the "lesser" members of our population.
One of my favorite new blogs is written by one of my fellow PA residents, and she wrote a very poignant commentary called Terri Schiavo and Autism, what is the connection. I don't know how to create links yet, but hopefully if you copy and paste you will be able to access the post to read the whole thing if you'd like. Basically, Terri Schiavo had brain damage, and needed help eating and with personal hygiene. She also had lost use of expressive language. She was not in a coma, she was not on life support. Her family of origin wanted to continue to care for her; her husband (who was considered by many to be responsible for her brain injury in the first place) got a court order in order to legally kill her by starving her to death.
http://debstake.wordpress.com/2008/11/20/terri-schiavo-and-autism-what-is-the-connection/
This was my comment:
I meant to say something about this the first time I read it, but was interupted by one of my aspies and forgot about it. But I think you hit the nail right on the head here, it is absolutely terrifying to think that any of us could so easily be disposable if the right circumstances conspire against us. People think this is an isolated incident, but this kind of attitude is used all the time to deny lower functioning autistics any kind of special education services or beneficial therapies. It is viewed as pointless or lacking pay off. Many wonder why so many parents in the autism community are focused on “cure” instead of accepting our children the way they are. WE are the ones who DO accept our children and value them, it’s the rest of the world that is so quick to dismiss our kids.
If we could prove that autism is curable, and enough kids “recover”, as they reach those higher levels of functioning, it is more difficult for the kids to be DISREGARDED. As Terri Schiavo was. What was especially horrifying to me about that specific case was that she had people who loved and cared about her advocating mightily on her behalf, and the government reasoned that it was STILL OK for her to be snuffed. Well if they have no concern about pumping our kids full of poisens that harm them, why should we surprised when they sanction outright murder? With all the reparation programs that we have instituted for slavery, forced sterility victims, and the World War II incarceration of Japanese Americans, you would think that we had reached a more enlightened age. We admitted we were wrong to deny people their civil rights and consider certain groups of people expendable. Guess not.
Wednesday, December 10, 2008
I couldn't get to one hundred .... yet.
1) I’ve always wanted to adopt four kids. Biological kids I could take or leave (easy to say if you’re not infertile). After I had one biological child with special needs, I wanted to adopt ten. I realized there are way too many kids out there that nobody wants. Since our second (surprise!) child also has autism, we are waiting on starting the adoption process until he’s a little older. I “borrowed” a third child from my cousin; she has lived with us since 2002.
2) I entered my forties with a whimper instead of a bang a couple years ago. I wish I could tell you that I think forty “rules.” When I told my pastor I was feeling old on my fortieth birthday, he said “I just turned fifty eight.” You gotta appreciate someone who helps you keep perspective at his own expense.
3) PA, DE, NJ, NY, MD, VA, WVA, CA, TX, AZ, IL, GA, MI, OH, OK, NM, NV, UT, ID, MT, MO, IN. I have been in 22 states that I remember. I have lived only in PA, MI, and CA. Most of the others I drove through on our way from MI to CA. I drove from CA to MT and back when I was 21. I wouldn’t mind moving down south because I’m sick of cold weather.
4) I am both the youngest of three and the second youngest of five. God bless blended families. I have full, half and step siblings. I also have an original mom, a stepmom, a foster mom, and a mother in law. Mother’s day is a bitch. I’ve got some great female mentors too.
5) My four siblings are all smarter than me. I think I was born with a reasonable intellect, they just have more. Well, I am better than my sisters at math, and better than my brothers at writing, so I guess I’m the happy medium. But they are all so cool. I hardly ever get to see them, and that sucks.
6) I have 35 first cousins. I couldn’t count the second cousins without getting out the family genealogy book. There are A LOT of them. And we all love to get together.
7) My grandmother and great grandmother lived long into their nineties. Here’s hoping.
8) I am a brittle diabetic. I found this out by having a mini stroke in 2007. This is the second time in my adult life that I have had a major illness to rehabilitate from. Whine bitch moan complain.
9) I love reading. Rather, I love reading GOOD books. Good is defined by my very subjective opinion. Books are like the air that I breathe. I love discussing books too.
10) I watch way too much tv, especially reality tv. I have wasted at least one lifetime doing this. It is definitely rotting what’s left of my brain. When I feel well, I don’t have time to waste on television. But I still love movies, in sickness and in health.
11) I was slow in embracing the internet; now I can’t imagine how I lived without it. I use it for shopping, research, socializing, self expression, education, entertainment and endless amounts of information.
12) I have always believed in eating well, exercising and medicating with herbs (legal ones). Even if I didn’t do it well, I believed in it. Now that I am diabetic, over half my diet is raw fruit and vegetables.
13) I am a closet Christian. I think I am a lousy witness, so I don’t do it even though I’m supposed to. Other Christians often annoyed the hell out of me before I was one, so I try not to do that to others. But my faith is very important to me.
15) I don’t believe in prayer in schools unless it is a private faith based school. I don’t want my kids to be forced to pray to Allah someday if the Muslims are in power, or some other religion that isn’t MINE. I don’t believe in making people of other faiths or non faith pray just because I want to.
16) I like to pray. A lot. I love reading scripture too, especially with an analysis guidebook in hand.
17) I think home education is the best option if you can afford it. Private school is better than public, but even I support basic public education with my votes. I think an educated citizenry is the only way to have and to preserve democracy. Too bad we suck as a country at public education. If you want to find out how to improve it, ask a teacher, not a politician.
18) My growing up life was rocky and stressful, but I thank god that my family impressed upon me the importance of higher education. Just getting my bachelor’s degree was a real struggle (even fully funded), but I have never regretted it; if I have the chance, I’ll still do more.
19) I left home at age 16 and went to college. Sounds tough, right? Nope, my dad paid for all of it. I didn’t even have a driver’s license yet. He bought me driving lessons too.
20) I started out in life as a blond. By age six, my hair had turned brown. I have never had the urge to try blond again, though I would like to get rid of the gray. I am too lazy/cheap to color my hair (so far). My hair is about two feet long now, at first I grew it to donate to charity, but now I’ve heard that they’ve stopped collecting it.
21) If I could have only one cosmetic procedure, my first choice would be to laser off all my excessive body hair. Hurray for genetics. The next thing would be my teeth, which aren’t in bad shape; I would just like them to be better. It would be nice to get rid of my stretch marks too, but I’m not sure anyone has perfected a technique for that. I would also consider a TINY tattoo if my little sister got one with me. But I might stop after the first touch of the needle, so I’d better go first.
22) As for NON cosmetic procedures, I have often wished my eyes could be corrected but I’m too scared to get the laser surgery in case it heals badly. There’s not really anything wrong with the appearance of my nose, but if I was brave and had the money, I would get that corrected too so I could breathe better.
23) I don’t do sports, I don’t follow sports. If I could correct the eyes and the hair thing, I would spend a lot of time in a swimming pool though. And I kind of like tennis. And ping pong. And basket ball. But I don’t do any of them anymore. I used to love cycling and roller skating too, though they’re not exactly team sports.
24) One of my favorite things about my husband is that he doesn’t follow sports, though he used to love playing volleyball and practicing martial arts. Another thing I love is that he doesn’t drink beer, or any alcohol at all. Another thing I like is that he is generally AWESOME. Of course, I’m not crazy about the asperger’s thing. But I’m pretty sure he doesn’t like my diabetes or fibromyalgia either.
25) I have fibromyalgia, which is basically a fancy word for really deep, sore muscle pain much of the time. It causes fatigue. It also has something to do with the “not interested in sports” issue. Any day in which I’m very active or even just do a lot of walking or driving, I really pay for the next day. But sometimes you gotta do it.
26) I was born near Philadelphia, and lived there with my mommy until I entered high school. Then I got shipped off to my Dad’s and spent the next twenty years in California. I developed severe hate for crowds and traffic. I am back near Philly now. I love all the greenery.
27) I had a chance to try both drinking and drugs in middle/high school, and I didn’t like them. I was offered cocaine in college, but I just wasn’t interested. I thank god I wasn’t inspired to go down that road. I had other vices, though, but to protect the innocent, I won’t discuss them. But I am nonetheless a big fan of rock and roll.
28) I though about suicide in both high school and college during two immensely emotionally painful times, both before I was 18. I wish I’d known there was help available.
29) I wish I’d had a relationship with god long before I did, but it wasn’t for a lack of trying. As my much admired Uncle said, “God’s timetable, not ours.” I’m so grateful that it finally happened. Consider me an eager consumer of the opiate of the masses.
30) Some of my favorite scripture, from the time I began my journey, was (and is):
he who has begun a good work in you will finish it
trust in the lord with all your heart, and rely not on your own understanding
I will never leave you nor forsake you
with god all things are possible
the joy of the lord is your strength
nothing in all creation will ever be able to separate us from the love of God
Don’t ask me which version. Pretty sure they’re not King James.
31) I love the Philly suburbs, but I really miss my people in Cali. My dream was to have an inexpensive home in each area, and I ALMOST made it happen, until the 9-11 recession, and we lost our Cali house. At least we kept our PA house! But our crisis was a lot less difficult than a lot of other people suffered at that time.
32) I have loved dogs since I was a little girl, and I still do. Cats are fun too; I’d gladly have both if I could.
33) I love playing the piano. I haven’t had one in my home since I was 16, I really miss it. Not that I have the room for it anyway. A cheap electronic keyboard is just not the same.
34) My biggest dream is to have a big house full of special needs children on a big acreage with an animal rescue. I’d also like to live not too far from a university so I can finish graduate school, and my dh could teach there.
35) We live near the border of Lancaster County (Amish territory) which is one of my favorite places on earth. We are impeded on car trips by horses and buggies quite often. If you have ever seen the TV show “John and Kate Plus Eight,” you will see a lot of the places we also like to go when they take their kids on local jaunts. It is also the location where much of the movie “Witness” was filmed. Sadly, we are also very close to the location where a gunman shot up a room full of Amish school children a couple years ago. I can’t pass by there without thinking about it.
36) My favorite color is lavender, followed by royal purple. My mother loves lavender too.
37) I stopped wearing jewelry during my first pregnancy, and haven’t done it since. Something about my body chemistry changed that made metal an irritant. I only ever really wore a watch and earrings, but I did love both, and now miss both. It’s hard for a control freak to live without a watch.
38) Snow is pretty but it’s really crap to drive in. I’m not a big fan of driving in the rain either. I’m not a big fan of driving PERIOD. My husband and I fight over who has to drive when we go out.
39) I love live folk music in coffee shops. I am also a metal fan, but only on my stereo. I don’t like to be in a crowd of metal fans. I don’t like to listen to classical music nearly as much as playing it. I’m embarrassed to admit that I like pop music too. I dislike rap though both my autie boys enjoyed it a young age. I love contemporary praise and worship music too, especially at my church.
40) I can’t sew, knit or crochet. I will sew on a button, but it will look cruddy. I wouldn’t mind learning, but it’s far down on the list. I NEVER iron, though I do most of the laundry in the house.
41) You know how some women collect shoes of purses? I have a thing for coats and jackets. I have no idea why. I hardly ever wear more than a few of them.
42) My second favorite hobby next to reading is taking pictures of people I know. I love to edit them and post them up to myspace, but I don’t keep it updated as much as I’d like. I used to love scrap booking before I had children, or I should say I love scrap booking and would still do it if I had the time and organization. A piano would surpass my camera for use if I had one.
43) I have been a big General Hospital fan since I was a little girl, but I haven’t watched it in like ten years. No time. I guess I could tape it and watch after bedtime; too much effort.
44) My first job was as a newspaper carrier at eleven years old for almost three years. I hated it. It taught me a lot of valuable lessons (I hate admitting my dad was right about that). Back in those days, we walked up to people’s doors and collected money, often going inside. NO WAY would I let my eleven year old daughter do that now. Not that I have one. But I wouldn’t even let my 21 year old daughter do it.
45) My next job was as a clerk in a low budget department store during my freshman year at UCLA. I hated that too, but it gave me a lot of motivation for completing college. I met lots of middle aged people there who hadn’t finished their education.
46) My third job was booking talent for children’s birthday parties and frat boy bachelor parties. Talk about interesting, weird, sometimes scary, and occasionally gross.
47) I transferred from the UC system to the CSU system after two years because I couldn’t stand the rich spoiled shallow students I kept meeting who were there to party. I should have looked harder for the ones who were serious about their education. I regretted transferring almost immediately after I discovered I was trading seventeen libraries for ONE. I should have tried hanging out with the graduate students instead. But the new program was practical and the students were serious and hard working, most with jobs. That part I loved.
48) I am not a gifted cook, and I don’t have the money for luxurious food anyway. Now that I have diabetes, our diet is more streamlined than ever. My poor family basically gets the same seven dishes rotated every week. But I get no complaints – I tell them they are welcome to make a pb and j if they don’t appreciate what I make. Well that’s not entirely true, my six year old usually complains everyday that he doesn’t like what I made, and then he eats it. He’s not a fan of pb and j.
49) My ideal decorating style would be plain furniture with massive amounts of filled bookcases and oil paintings of impressionist landscapes with lots of lavender and purple. I would have an entire large wall devoted to family and friend portraits though. The carpets and drapes would not draw attention to themselves. I love to decorate for holidays too. I really enjoy arts and crafty things that people make for me.
50) We consider ourselves very blessed though simple living is the name of the game. The only way I can afford to be a stay at home mom is to budget very carefully and balance the checkbook to the penny. We have lots of debt and no savings thanks to medical bills, a couple extended periods of unemployment and losing our first house after 9-11. Supposedly, we have GOOD health insurance. We both had plenty of school debt coming into the marriage. We have an extremely modest house (can be put on wheels) and two very old cars. But it’s worth any lack of luxury to be home with my asperger boys.
I don't really stop at fifty, I am a work in progress.....
2) I entered my forties with a whimper instead of a bang a couple years ago. I wish I could tell you that I think forty “rules.” When I told my pastor I was feeling old on my fortieth birthday, he said “I just turned fifty eight.” You gotta appreciate someone who helps you keep perspective at his own expense.
3) PA, DE, NJ, NY, MD, VA, WVA, CA, TX, AZ, IL, GA, MI, OH, OK, NM, NV, UT, ID, MT, MO, IN. I have been in 22 states that I remember. I have lived only in PA, MI, and CA. Most of the others I drove through on our way from MI to CA. I drove from CA to MT and back when I was 21. I wouldn’t mind moving down south because I’m sick of cold weather.
4) I am both the youngest of three and the second youngest of five. God bless blended families. I have full, half and step siblings. I also have an original mom, a stepmom, a foster mom, and a mother in law. Mother’s day is a bitch. I’ve got some great female mentors too.
5) My four siblings are all smarter than me. I think I was born with a reasonable intellect, they just have more. Well, I am better than my sisters at math, and better than my brothers at writing, so I guess I’m the happy medium. But they are all so cool. I hardly ever get to see them, and that sucks.
6) I have 35 first cousins. I couldn’t count the second cousins without getting out the family genealogy book. There are A LOT of them. And we all love to get together.
7) My grandmother and great grandmother lived long into their nineties. Here’s hoping.
8) I am a brittle diabetic. I found this out by having a mini stroke in 2007. This is the second time in my adult life that I have had a major illness to rehabilitate from. Whine bitch moan complain.
9) I love reading. Rather, I love reading GOOD books. Good is defined by my very subjective opinion. Books are like the air that I breathe. I love discussing books too.
10) I watch way too much tv, especially reality tv. I have wasted at least one lifetime doing this. It is definitely rotting what’s left of my brain. When I feel well, I don’t have time to waste on television. But I still love movies, in sickness and in health.
11) I was slow in embracing the internet; now I can’t imagine how I lived without it. I use it for shopping, research, socializing, self expression, education, entertainment and endless amounts of information.
12) I have always believed in eating well, exercising and medicating with herbs (legal ones). Even if I didn’t do it well, I believed in it. Now that I am diabetic, over half my diet is raw fruit and vegetables.
13) I am a closet Christian. I think I am a lousy witness, so I don’t do it even though I’m supposed to. Other Christians often annoyed the hell out of me before I was one, so I try not to do that to others. But my faith is very important to me.
15) I don’t believe in prayer in schools unless it is a private faith based school. I don’t want my kids to be forced to pray to Allah someday if the Muslims are in power, or some other religion that isn’t MINE. I don’t believe in making people of other faiths or non faith pray just because I want to.
16) I like to pray. A lot. I love reading scripture too, especially with an analysis guidebook in hand.
17) I think home education is the best option if you can afford it. Private school is better than public, but even I support basic public education with my votes. I think an educated citizenry is the only way to have and to preserve democracy. Too bad we suck as a country at public education. If you want to find out how to improve it, ask a teacher, not a politician.
18) My growing up life was rocky and stressful, but I thank god that my family impressed upon me the importance of higher education. Just getting my bachelor’s degree was a real struggle (even fully funded), but I have never regretted it; if I have the chance, I’ll still do more.
19) I left home at age 16 and went to college. Sounds tough, right? Nope, my dad paid for all of it. I didn’t even have a driver’s license yet. He bought me driving lessons too.
20) I started out in life as a blond. By age six, my hair had turned brown. I have never had the urge to try blond again, though I would like to get rid of the gray. I am too lazy/cheap to color my hair (so far). My hair is about two feet long now, at first I grew it to donate to charity, but now I’ve heard that they’ve stopped collecting it.
21) If I could have only one cosmetic procedure, my first choice would be to laser off all my excessive body hair. Hurray for genetics. The next thing would be my teeth, which aren’t in bad shape; I would just like them to be better. It would be nice to get rid of my stretch marks too, but I’m not sure anyone has perfected a technique for that. I would also consider a TINY tattoo if my little sister got one with me. But I might stop after the first touch of the needle, so I’d better go first.
22) As for NON cosmetic procedures, I have often wished my eyes could be corrected but I’m too scared to get the laser surgery in case it heals badly. There’s not really anything wrong with the appearance of my nose, but if I was brave and had the money, I would get that corrected too so I could breathe better.
23) I don’t do sports, I don’t follow sports. If I could correct the eyes and the hair thing, I would spend a lot of time in a swimming pool though. And I kind of like tennis. And ping pong. And basket ball. But I don’t do any of them anymore. I used to love cycling and roller skating too, though they’re not exactly team sports.
24) One of my favorite things about my husband is that he doesn’t follow sports, though he used to love playing volleyball and practicing martial arts. Another thing I love is that he doesn’t drink beer, or any alcohol at all. Another thing I like is that he is generally AWESOME. Of course, I’m not crazy about the asperger’s thing. But I’m pretty sure he doesn’t like my diabetes or fibromyalgia either.
25) I have fibromyalgia, which is basically a fancy word for really deep, sore muscle pain much of the time. It causes fatigue. It also has something to do with the “not interested in sports” issue. Any day in which I’m very active or even just do a lot of walking or driving, I really pay for the next day. But sometimes you gotta do it.
26) I was born near Philadelphia, and lived there with my mommy until I entered high school. Then I got shipped off to my Dad’s and spent the next twenty years in California. I developed severe hate for crowds and traffic. I am back near Philly now. I love all the greenery.
27) I had a chance to try both drinking and drugs in middle/high school, and I didn’t like them. I was offered cocaine in college, but I just wasn’t interested. I thank god I wasn’t inspired to go down that road. I had other vices, though, but to protect the innocent, I won’t discuss them. But I am nonetheless a big fan of rock and roll.
28) I though about suicide in both high school and college during two immensely emotionally painful times, both before I was 18. I wish I’d known there was help available.
29) I wish I’d had a relationship with god long before I did, but it wasn’t for a lack of trying. As my much admired Uncle said, “God’s timetable, not ours.” I’m so grateful that it finally happened. Consider me an eager consumer of the opiate of the masses.
30) Some of my favorite scripture, from the time I began my journey, was (and is):
he who has begun a good work in you will finish it
trust in the lord with all your heart, and rely not on your own understanding
I will never leave you nor forsake you
with god all things are possible
the joy of the lord is your strength
nothing in all creation will ever be able to separate us from the love of God
Don’t ask me which version. Pretty sure they’re not King James.
31) I love the Philly suburbs, but I really miss my people in Cali. My dream was to have an inexpensive home in each area, and I ALMOST made it happen, until the 9-11 recession, and we lost our Cali house. At least we kept our PA house! But our crisis was a lot less difficult than a lot of other people suffered at that time.
32) I have loved dogs since I was a little girl, and I still do. Cats are fun too; I’d gladly have both if I could.
33) I love playing the piano. I haven’t had one in my home since I was 16, I really miss it. Not that I have the room for it anyway. A cheap electronic keyboard is just not the same.
34) My biggest dream is to have a big house full of special needs children on a big acreage with an animal rescue. I’d also like to live not too far from a university so I can finish graduate school, and my dh could teach there.
35) We live near the border of Lancaster County (Amish territory) which is one of my favorite places on earth. We are impeded on car trips by horses and buggies quite often. If you have ever seen the TV show “John and Kate Plus Eight,” you will see a lot of the places we also like to go when they take their kids on local jaunts. It is also the location where much of the movie “Witness” was filmed. Sadly, we are also very close to the location where a gunman shot up a room full of Amish school children a couple years ago. I can’t pass by there without thinking about it.
36) My favorite color is lavender, followed by royal purple. My mother loves lavender too.
37) I stopped wearing jewelry during my first pregnancy, and haven’t done it since. Something about my body chemistry changed that made metal an irritant. I only ever really wore a watch and earrings, but I did love both, and now miss both. It’s hard for a control freak to live without a watch.
38) Snow is pretty but it’s really crap to drive in. I’m not a big fan of driving in the rain either. I’m not a big fan of driving PERIOD. My husband and I fight over who has to drive when we go out.
39) I love live folk music in coffee shops. I am also a metal fan, but only on my stereo. I don’t like to be in a crowd of metal fans. I don’t like to listen to classical music nearly as much as playing it. I’m embarrassed to admit that I like pop music too. I dislike rap though both my autie boys enjoyed it a young age. I love contemporary praise and worship music too, especially at my church.
40) I can’t sew, knit or crochet. I will sew on a button, but it will look cruddy. I wouldn’t mind learning, but it’s far down on the list. I NEVER iron, though I do most of the laundry in the house.
41) You know how some women collect shoes of purses? I have a thing for coats and jackets. I have no idea why. I hardly ever wear more than a few of them.
42) My second favorite hobby next to reading is taking pictures of people I know. I love to edit them and post them up to myspace, but I don’t keep it updated as much as I’d like. I used to love scrap booking before I had children, or I should say I love scrap booking and would still do it if I had the time and organization. A piano would surpass my camera for use if I had one.
43) I have been a big General Hospital fan since I was a little girl, but I haven’t watched it in like ten years. No time. I guess I could tape it and watch after bedtime; too much effort.
44) My first job was as a newspaper carrier at eleven years old for almost three years. I hated it. It taught me a lot of valuable lessons (I hate admitting my dad was right about that). Back in those days, we walked up to people’s doors and collected money, often going inside. NO WAY would I let my eleven year old daughter do that now. Not that I have one. But I wouldn’t even let my 21 year old daughter do it.
45) My next job was as a clerk in a low budget department store during my freshman year at UCLA. I hated that too, but it gave me a lot of motivation for completing college. I met lots of middle aged people there who hadn’t finished their education.
46) My third job was booking talent for children’s birthday parties and frat boy bachelor parties. Talk about interesting, weird, sometimes scary, and occasionally gross.
47) I transferred from the UC system to the CSU system after two years because I couldn’t stand the rich spoiled shallow students I kept meeting who were there to party. I should have looked harder for the ones who were serious about their education. I regretted transferring almost immediately after I discovered I was trading seventeen libraries for ONE. I should have tried hanging out with the graduate students instead. But the new program was practical and the students were serious and hard working, most with jobs. That part I loved.
48) I am not a gifted cook, and I don’t have the money for luxurious food anyway. Now that I have diabetes, our diet is more streamlined than ever. My poor family basically gets the same seven dishes rotated every week. But I get no complaints – I tell them they are welcome to make a pb and j if they don’t appreciate what I make. Well that’s not entirely true, my six year old usually complains everyday that he doesn’t like what I made, and then he eats it. He’s not a fan of pb and j.
49) My ideal decorating style would be plain furniture with massive amounts of filled bookcases and oil paintings of impressionist landscapes with lots of lavender and purple. I would have an entire large wall devoted to family and friend portraits though. The carpets and drapes would not draw attention to themselves. I love to decorate for holidays too. I really enjoy arts and crafty things that people make for me.
50) We consider ourselves very blessed though simple living is the name of the game. The only way I can afford to be a stay at home mom is to budget very carefully and balance the checkbook to the penny. We have lots of debt and no savings thanks to medical bills, a couple extended periods of unemployment and losing our first house after 9-11. Supposedly, we have GOOD health insurance. We both had plenty of school debt coming into the marriage. We have an extremely modest house (can be put on wheels) and two very old cars. But it’s worth any lack of luxury to be home with my asperger boys.
I don't really stop at fifty, I am a work in progress.....
Survey: appropriate education for aspie's
One very famous book author with asperger's syndrome, who I have already referenced in this blog, asked his readers to provide him with input for speaking to a group of educators concerned with increasing student achievement. Apparently autistic students aren't doing so well in traditional public schools. Is this a great surprise to anyone who has a child on the spectrum? Anyway, this was my suggestion:
I think the children's voices really need to be heard. Usually they are able to communicate, if not verbally, in other ways, what works for them and helps them to maximize their success. My guess is that most children with a spectrum diagnosis DO NOT appreciate mainstreaming, but why not ask them, or let them show you? And other volatile environments, like a school bus, hallways, or cafeterias, are often recipes for disaster because the stimulation is so overwhelming. When meltdowns happen, learning isn't.
Our state offers publicly funded cyber schooling, and that is a big hit with my aspie teen. Another cyber school we are considering has a large aspie population by default, this was a development the administration wasn't expecting. But one of their teachers told me that this appears to be a method by which aspies are able to thrive because it cuts out so many of the negative aspects of a traditional brick and mortar school for those students. It also utilizes "block" scheduling, which allows students to focus on fewer subjects in greater depth at one time. My son has asked me to transfer him to that school for that reason.
A venue for social skills is important too, critical even, but only if it's a POSITIVE experience for the individual. Negative social experiences generally lead to academic failure and withdrawal. Rarely in "the real world" is an adult forced to stay in a negative social environment. What educators often think should be a positive social environment is just the opposite for a kid on the spectrum.
My concern especially is those teachers who tolerate bullying, because the autistic person's behavior is considered purposefully negative, rather than typical or unavoidable for them. To me, this like allowing a deaf person to be ostracized since they are being "bad" for not listening. Note the teacher in Florida who had her students each voice how much they disliked their autistic classmate's behavior as a group to his face in a "Survivor" style.
Teachers who are expected to teach autistic children need to be specifically educated about it, no question. If someone used the word "unmotivated" to describe my child, I would tell them, "why would you expect him to be?" Those are not appropriate standards for our children, and the teachers need to understand that.
More than that, as the population of people on the spectrum continues to grow at an exponential rate, the other students need to be specifically educated about neurodiversity, and not just "tolerance", but acceptance. Especially in districts where mainstreaming is still considered the preferable method of education, the other students NEED that help in understanding their autistic classmates.
I think the children's voices really need to be heard. Usually they are able to communicate, if not verbally, in other ways, what works for them and helps them to maximize their success. My guess is that most children with a spectrum diagnosis DO NOT appreciate mainstreaming, but why not ask them, or let them show you? And other volatile environments, like a school bus, hallways, or cafeterias, are often recipes for disaster because the stimulation is so overwhelming. When meltdowns happen, learning isn't.
Our state offers publicly funded cyber schooling, and that is a big hit with my aspie teen. Another cyber school we are considering has a large aspie population by default, this was a development the administration wasn't expecting. But one of their teachers told me that this appears to be a method by which aspies are able to thrive because it cuts out so many of the negative aspects of a traditional brick and mortar school for those students. It also utilizes "block" scheduling, which allows students to focus on fewer subjects in greater depth at one time. My son has asked me to transfer him to that school for that reason.
A venue for social skills is important too, critical even, but only if it's a POSITIVE experience for the individual. Negative social experiences generally lead to academic failure and withdrawal. Rarely in "the real world" is an adult forced to stay in a negative social environment. What educators often think should be a positive social environment is just the opposite for a kid on the spectrum.
My concern especially is those teachers who tolerate bullying, because the autistic person's behavior is considered purposefully negative, rather than typical or unavoidable for them. To me, this like allowing a deaf person to be ostracized since they are being "bad" for not listening. Note the teacher in Florida who had her students each voice how much they disliked their autistic classmate's behavior as a group to his face in a "Survivor" style.
Teachers who are expected to teach autistic children need to be specifically educated about it, no question. If someone used the word "unmotivated" to describe my child, I would tell them, "why would you expect him to be?" Those are not appropriate standards for our children, and the teachers need to understand that.
More than that, as the population of people on the spectrum continues to grow at an exponential rate, the other students need to be specifically educated about neurodiversity, and not just "tolerance", but acceptance. Especially in districts where mainstreaming is still considered the preferable method of education, the other students NEED that help in understanding their autistic classmates.
Tuesday, December 9, 2008
Denis Leary Autism controversy
Ok, so Denis Leary recently wrote a "humor" book, whose title I don't want to print here, because I already feel like I am giving it too much publicity to discuss it at all. He includes a chapter devoted to parents who seek to inaccurately have their children diagnosed with autism on purpose because this somehow allows them not to take responsibility for their children's negative behavior. Apparently he believes this is a frequent occurence. This has created quite an uproar in the autism community, people who are understandably offended by the notion that they would deliberately wish this diagnosis on their children just so they can say "I'm not a bad parent, my child has autism." Some people have asked me what I think about this as a mother of two children with autism. Well I think a lot, but Denis Leary is so utterly wrong that there's nothing there to debate. I just see that it's one more example of the enormous lack of autism awareness in our society, and what harm it causes.
I read the whole autism chapter by Denis Leary on another autism blog, and I have to say, his defense that his comments were “taken out of context” is full of crap. The idea that the reason there is such a “huge boom” in autism rates is because parents are purposely seeking low level diagnoses is SO far off the mark, it couldn’t possibly be funny in any context whatsoever. The last thing the autism community needs to be marginalized yet again, as if the epidemic isn’t REALLY happening, so no one has to take any responsibility to try to stop it or contain it. We parents just need to stop complaining since we’re too inattentive to parent our lazy, dumb kids. The way he keeps trying to excuse himself is sickening, instead of just stepping up and admitting he doesn’t know that much about autism. That if you know one kid with autism, you DON’T know them all. If he had done that, it would have maybe helped spread awareness about autism, but it really doesn’t seem like there’s any way to redeem this situation. Once again attributing autism (or “fake” autism) to bad parenting or parents’ recreational drug use takes us right back to Bruno Bettelheim blaming “refrigerator” moms for their child’s diagnoses of autism in the fifties.
I think his commentary also marginalizes all children with learning disabilities whose numbers are also rapidly increasing. If we don’t acknowledge soon how our toxic environment is causing problems for everyone, we will soon have a financial crisis in this country that far outstrips our current corporate/industry national economic disaster. There won’t be any amount of bailout that will compensate.
I also was offended by his insult to John Elder Robison, who has not only made a very significant contribution to society with the work that he’s done career wise, but has also made an ENORMOUS contribution to society by writing “Look Me In the Eye” so that the rest of us can understand a little better what someone with Asperger’s feels and thinks. Just one person, mind you, but something a lot of people can relate to.
I was a Denis Leary fan too.
I read the whole autism chapter by Denis Leary on another autism blog, and I have to say, his defense that his comments were “taken out of context” is full of crap. The idea that the reason there is such a “huge boom” in autism rates is because parents are purposely seeking low level diagnoses is SO far off the mark, it couldn’t possibly be funny in any context whatsoever. The last thing the autism community needs to be marginalized yet again, as if the epidemic isn’t REALLY happening, so no one has to take any responsibility to try to stop it or contain it. We parents just need to stop complaining since we’re too inattentive to parent our lazy, dumb kids. The way he keeps trying to excuse himself is sickening, instead of just stepping up and admitting he doesn’t know that much about autism. That if you know one kid with autism, you DON’T know them all. If he had done that, it would have maybe helped spread awareness about autism, but it really doesn’t seem like there’s any way to redeem this situation. Once again attributing autism (or “fake” autism) to bad parenting or parents’ recreational drug use takes us right back to Bruno Bettelheim blaming “refrigerator” moms for their child’s diagnoses of autism in the fifties.
I think his commentary also marginalizes all children with learning disabilities whose numbers are also rapidly increasing. If we don’t acknowledge soon how our toxic environment is causing problems for everyone, we will soon have a financial crisis in this country that far outstrips our current corporate/industry national economic disaster. There won’t be any amount of bailout that will compensate.
I also was offended by his insult to John Elder Robison, who has not only made a very significant contribution to society with the work that he’s done career wise, but has also made an ENORMOUS contribution to society by writing “Look Me In the Eye” so that the rest of us can understand a little better what someone with Asperger’s feels and thinks. Just one person, mind you, but something a lot of people can relate to.
I was a Denis Leary fan too.
Monday, December 8, 2008
Christmas survey
When do you start Christmas shopping?
I shop all year round, whenever I see a good sale on something that seems like a good gift idea for someone in particular. But I usually end up doing the bulk of it two months prior.
Are you finished shopping?
Not even close.
How many people are you buying for?
Well there's thirty people on my list. I'll be surprised if I get to half of them.
What are you leaving out for Santa?
Whatever I feel like eating, since that's me.
Name 3 things you want for Christmas:
A digital video camera, a better still digital camera, and a treadmill for my big butt. I hate to walk in the cold.
Are you traveling this year?
No. I wouldn't mind traveling on xmas day itself if the plane tix were cheap. But I DID finally buy plane tix (after waiting four years) for the whole family to visit our extended family on the west coast very soon.
What kind of stockings are hung at your house?
Probably won't have any this year because the house is still in post stroke disaster mode.
Do you have a fireplace/chimney?
Not anymore. Love them.
Favorite things to get in your stocking?
Lifesavers book. Though they probably don't come in sugar free, which I need now. Oooo, some sugar free chocolate would be nice.
Any family traditions?
Opening gifts one at a time in a round robin fashion on Christmas morning. I used to have a gingerbread house decorating party every year early in December. I would like to resurrect that. I have taken my kids to a community christmas party the last two years in a row, and I would like to keep doing that. This year they featured a showing of Olive, the other Reindeer. Herr's potato chip factory puts up a spectacular light display at their company hq, and I've taken the kids to see that for the last seven years. Sometimes we have extended family over, or go to their house. When we lived in Cali, we were expected at the 'rents. Dad's on Xmas Eve, In Laws Xmas morn, foster mom's Xmas nite. My bio mom was invited to all three as well. It was exhausting.
What foods does your family have every year at Christmas?
Usually turkey and mashed potatoes.
Who is the most fun to buy for?
My six year old. He appreciates everything the most. His reactions are enthusiastic and genuine.
Who is the easiest to buy for?
My six year old. He likes everything.
Who is the hardest to buy for?
My parents. They have everything, or don't want much.
Who gives the best gifts?
I have one parent that usually gives me books, which I adore. It's usually someone different every year who might surprise me with something very thoughtful. It's never my husband, who hates Christmas shopping. Most years now we agree not to give each other gifts, in order to save what few precious dollars we have on the kids, or we agree to go out on a date to something less than forty bucks.
Any movies/specials you have to watch every year?
I love Christmas Story, the original How the Grinch Stole Christmas, and also The Year Without A Santa Claus, because I love the Heat Miser and the Snow Miser songs.
Who passes out the presents?
That is the perfect job for OCD girl.
Main stores you have shopped at this year:
Thrift stores, dollartree, Kmart.
What kind of tree do you have?
A tiny fake one, that we probably won't put up this year.
What are your 3 favorite ornaments on your tree?
Ones that my mom makes. I love those.
What adorns the top of your tree?
I have a very original handmade crocheted angel tree topper that was not designed for such purpose but we use it anyway. Thanks again mom.
Do you collect anything Christmasy?
If I see cheap ornaments that I like during the year, I will pick them up. That's rare now.
Whose kids are you buying for this year?
Mine, and possibly a few friends who are going through challenges.
Can you name all 9 reindeer?
Yep. Dasher, Dancer, Prancer, Vixen, Comet, Cupid, Donner, Blitzen, Rudolph. Didn't even have to look them up.
Ever watch Ernest Saves Christmas?
No, with no intention or interest.
What's your favorite Christmas drink?
Hot chocolate with marshmellows.
Do you like Eggnog?
No, the thought of raw eggs does not appeal anymore.
What flavor candy canes do you like?
Original peppermint, and some kind of fruity thing. Not chocolate.
When do you take your tree down?
It has stayed over an extra month or more before.
Is Christmas still magical for you?
Not usually. I don't like the total consumerism. And I prefer to worship Jesus all year round.
What is your favorite thing about Christmas?
Happy kids.
Do you donate at Christmas time?
I donate all year round, I don't usually reserve it just for Xmas. This year we donated forty coats to a holiday warm clothing drive, but I would have done it anytime, it just happened to get collected now when the weather turned cold. We never donate as much as I would like.
Do you make sure to remember the TRUE meaning of Christmas?
Not usually. We don't make the effort to talk about it, or do something special. I like the Veggie Tales special about the topic, but we watch it all year round.
How many nativity scenes do you have in your house?
None, but I'm not opposed to them. If my house was less cluttered, I think they are nice decorations for the season.
Have you been naughty or nice?
Depends on what you mean by naughty. And depends on who you ask about nice.
I shop all year round, whenever I see a good sale on something that seems like a good gift idea for someone in particular. But I usually end up doing the bulk of it two months prior.
Are you finished shopping?
Not even close.
How many people are you buying for?
Well there's thirty people on my list. I'll be surprised if I get to half of them.
What are you leaving out for Santa?
Whatever I feel like eating, since that's me.
Name 3 things you want for Christmas:
A digital video camera, a better still digital camera, and a treadmill for my big butt. I hate to walk in the cold.
Are you traveling this year?
No. I wouldn't mind traveling on xmas day itself if the plane tix were cheap. But I DID finally buy plane tix (after waiting four years) for the whole family to visit our extended family on the west coast very soon.
What kind of stockings are hung at your house?
Probably won't have any this year because the house is still in post stroke disaster mode.
Do you have a fireplace/chimney?
Not anymore. Love them.
Favorite things to get in your stocking?
Lifesavers book. Though they probably don't come in sugar free, which I need now. Oooo, some sugar free chocolate would be nice.
Any family traditions?
Opening gifts one at a time in a round robin fashion on Christmas morning. I used to have a gingerbread house decorating party every year early in December. I would like to resurrect that. I have taken my kids to a community christmas party the last two years in a row, and I would like to keep doing that. This year they featured a showing of Olive, the other Reindeer. Herr's potato chip factory puts up a spectacular light display at their company hq, and I've taken the kids to see that for the last seven years. Sometimes we have extended family over, or go to their house. When we lived in Cali, we were expected at the 'rents. Dad's on Xmas Eve, In Laws Xmas morn, foster mom's Xmas nite. My bio mom was invited to all three as well. It was exhausting.
What foods does your family have every year at Christmas?
Usually turkey and mashed potatoes.
Who is the most fun to buy for?
My six year old. He appreciates everything the most. His reactions are enthusiastic and genuine.
Who is the easiest to buy for?
My six year old. He likes everything.
Who is the hardest to buy for?
My parents. They have everything, or don't want much.
Who gives the best gifts?
I have one parent that usually gives me books, which I adore. It's usually someone different every year who might surprise me with something very thoughtful. It's never my husband, who hates Christmas shopping. Most years now we agree not to give each other gifts, in order to save what few precious dollars we have on the kids, or we agree to go out on a date to something less than forty bucks.
Any movies/specials you have to watch every year?
I love Christmas Story, the original How the Grinch Stole Christmas, and also The Year Without A Santa Claus, because I love the Heat Miser and the Snow Miser songs.
Who passes out the presents?
That is the perfect job for OCD girl.
Main stores you have shopped at this year:
Thrift stores, dollartree, Kmart.
What kind of tree do you have?
A tiny fake one, that we probably won't put up this year.
What are your 3 favorite ornaments on your tree?
Ones that my mom makes. I love those.
What adorns the top of your tree?
I have a very original handmade crocheted angel tree topper that was not designed for such purpose but we use it anyway. Thanks again mom.
Do you collect anything Christmasy?
If I see cheap ornaments that I like during the year, I will pick them up. That's rare now.
Whose kids are you buying for this year?
Mine, and possibly a few friends who are going through challenges.
Can you name all 9 reindeer?
Yep. Dasher, Dancer, Prancer, Vixen, Comet, Cupid, Donner, Blitzen, Rudolph. Didn't even have to look them up.
Ever watch Ernest Saves Christmas?
No, with no intention or interest.
What's your favorite Christmas drink?
Hot chocolate with marshmellows.
Do you like Eggnog?
No, the thought of raw eggs does not appeal anymore.
What flavor candy canes do you like?
Original peppermint, and some kind of fruity thing. Not chocolate.
When do you take your tree down?
It has stayed over an extra month or more before.
Is Christmas still magical for you?
Not usually. I don't like the total consumerism. And I prefer to worship Jesus all year round.
What is your favorite thing about Christmas?
Happy kids.
Do you donate at Christmas time?
I donate all year round, I don't usually reserve it just for Xmas. This year we donated forty coats to a holiday warm clothing drive, but I would have done it anytime, it just happened to get collected now when the weather turned cold. We never donate as much as I would like.
Do you make sure to remember the TRUE meaning of Christmas?
Not usually. We don't make the effort to talk about it, or do something special. I like the Veggie Tales special about the topic, but we watch it all year round.
How many nativity scenes do you have in your house?
None, but I'm not opposed to them. If my house was less cluttered, I think they are nice decorations for the season.
Have you been naughty or nice?
Depends on what you mean by naughty. And depends on who you ask about nice.
Sunday, December 7, 2008
INCLUSION, the forever challenge
I don't know how to track back, so if you're really motivated, you can read the post of a lovely young woman, who I think the world of, who is currently a cast member of A Chorus Line, coming soon to Philadelphia.
http://thislifeinwriting.blogspot.com/2008/12/audienceparticipation.html
This was my comment to her post:
As a mother of two autistic kids, you can imagine I have some pretty strong feelings about this. I apologize in advance for the mega long comment, feel free to delete me. So fortunate for me that my kids are high functioning enough to be able to participate in most age appropriate activities without much incident, but I have certainly met plenty of parents who travel in the same circles who aren't as lucky. And I still have to take care of a lot of details that people without special needs kids can't understand in regards to social events. Solutions are really tough.
For one, we definitely need to be better as a society when it comes to inclusion for all of our members who have special challenges, the elderly and physically challenged are very often left out in this way also. Less than forty years ago, there were no public schools for children with special needs, and yet all of us pay taxes into the system. We are definitely talking about institutionalized discrimination, this attitude for sure bleeds over into the private sector.
But the experiences need to be tailored to the individual as well. Just as you would probably not take a newborn baby or a toddler to a swanky restaurant, I would not put my boys in the position of being somewhere that they couldn't appreciate or are unlikely to behave appropriately. You should definitely consider the needs of the performers or the other patrons. For instance, we all love the library, but it is only considerate to be relatively quiet there. My kids are over stimulated by the presence of too many other people, so I go out of my way to take them when I know traffic is going to be lower, and we patronize specifically libraries that cater to children. The problem for us is finding those kind of resources in other kinds of social environments.
In the specific case you were describing, no one on the outside can really judge whether or not this young man was able to truly appreciate your show, but I'm willing to bet the people around him drew an unfavorable conclusion. Few people take the time to learn about special interests that don't affect them personally. I love that you're even thinking about what he might gain from it Jess. I still think about you coaching my oldest boy in the first ever VCF Children's choir, he loved that. I don't usually encourage him to participate in things like that because most of the adults in charge are not tolerant enough.
When my oldest son was little, I took him to plays that were targeted just to small children. I didn't take him to a general audience play (Oklahoma) until he was seven, and even that was approaching the boundaries. I generally pick seats on the aisle in case we need to make a hasty exit. Half way through he got up and started walking toward the stage while the play was still in progress, because he wanted to see how the set was made.
It's such a hard line to draw - we have standards set, and necessarily so, of how people are supposed to behave in certain situations in order to be considerate of the others around them. Yet if an individual is UNABLE to meet those standars, should they always be left out? In a civilized society, I would hate to draw that conclusion.
Jason's idea of special performances to accommodate special groups are WIDELY popular in those communities, yet this option is often not considered. Disneyland has a "gay" night in their park on occasion. Sesame Place has two dates per year that cater especially to children with disabilities, one specifically for autism. You could consider that bad or good; is that inclusion, or is it just another form of discrimination? Aren't we supposed to be working towards acceptance, not segregation? I think there is a strong argument that those special occasions DO demonstrate acceptance, at least for now, because the people who participate are actually more comfortable in those forums as opposed to being "mainstreamed."
I will tell you that I would gladly take my boy to see ACL if there was such a special performance in Philly (if I could afford it!)
My family participated in a week long christian family camp this last summer that was a huge deal for us. The preparation I went through for it was enormous. I felt comfortable making that choice because the counselors were already trained to accommodate campers with special needs, boasting not only a "special needs" week for the mentally challenged, but just the week before our "family" camp, they had a week of autism day camp including children who attended with personal care workers. That had been a really sensitizing experience, and by the time my family showed up, the counselors were very enthusiastic to put their new skills to work. I had attended this camp myself as a child, and I know without the combination of all those variables, I would have unlikely felt comfortable attending.
One thing that really drew me to VCF Barn when I was in the market for a new church back in 2004 was the parents' rooms where one could breastfeed and care for young children while still participating in the service without disrupting it. As it turned out, the constant stream of traffic in and out of the office behind it made it semi chaotic. I was looking forward to the new room built in the new church where the service could be viewed without sharing function with administration. Yet I heard recently that the room was changed to a drop off nursery, so if a parent wishes to nurse a child, they now do so in locations without visual attachment to the worship service. I think that's a shame, but I know when there is limited space and resources, you try to take care of the majority of perceived needs of your congregation.
That's very often the kind of philosophy that finds people with special needs on the outside. I always used to be aggravated when Spock (and here I reveal myself as a closet trekkie) of Star Trek fame used to say "the needs of the many outweigh the needs of the few." That very much marginalizes the same members of society repeatedly. Aren't we more enlightened than that?
A few years ago another old church nearby that my extended family had attended for generations got a new pastor, and he quickly shut down the Sunday night service for lack of heavy enough attendence. I was disgusted with him because I knew at least one person in particular who attended such a service because it was the ONLY way she could. Had the pastor taken her into consideration?
I couldn't help but think of God's promise to Abraham not to destroy Sodom and Gomorrah if he would find even just ten souls that weren't wicked there. I feel pretty sure that if Abraham had kept wittling down the number to even one, that God would have still agreed to spare the cities because he values us all so much. I had at least hoped that the pastor would figure out another way for this one member of his congregation to get her needs met.
For us, I know that large churches exist that have a "noise" room with glass, and that is an option that my ancestors didn't have, so I should be grateful. I attended one such service at Calvary in Orange County CA. But I can't help but feel that my children will be better served in a small church environment than a mega one for which we would have a very long, wearing drive anyway. My goal is for them to participate and build relationships in their own local community as much as possible.
Hopefully this issue, like the environment, is starting to take greater priority in the age to come. I know that with autism on the rise specifically at an astronomic rate, it's an issue that will have to be dealt with. Recently I read a newspaper article written the year after the 2000 census that reported that fifteen percent of school age children now require some kind of special education services. That's roughly one in seven. The autism epidemic is only adding fuel to that fire.
It seems so wrong for me to be happy that there will more likely be more inclusion opportunities for my kids in the future when that probabilty is based on the increased rate of disability. Hopefully we will not only be more sensitive about inclusion and acceptance, but will be inspired as a society to look harder for the causes of why we have so many special needs in the first place.
Why does this issue matter so much? Because the extent to which the "least of these," our brethren, are included in our society often impacts in great ways their level of functioning and contribution. I think you were right to speculate what positive effect ACL might have on him. We can't know, but it might be a lot, especially if it's part of a cumulative effort. And the kind of effect it has ones who accept is profound as well. The people who take care of and include special needs people are changed in ways they can't imagine.
My oldest is now a teenager, and I know that college, career, marriage and family are all possibilities for him if only he gets the right kind of socialization NOW. Recently I was praying about finding a Youth Group environment for him which he might be able to attend independently (meaning without me or his father for a change, although we would still be willing to do that too) with the right kind of leadership and concern from the other participants. Developing independence is so very critical. A month or so later an invitation to youth group popped into my email inbox and I thought, "well lord, is this the answer?"
I contacted the youth leader and explained the situation, and he asked for some time to pray on the situation. It's been two months, and I've had no reply. Not a yes OR a no, or a "we're still thinking about it" or "we need more information."
Sadly, this is a frequent kind of occurence. People are very uncomfortable with this issue, they hate to say no, but they are afraid to say yes. This happens to us and others similarly situated all the time, especially when faith based organizations are involved. And I understand completely. It's a tough line to walk.
Even with two autistic kids, I know that if I sat next to a very disruptive audience member (have done that with drunks and druggies at rock concerts) and had paid a massive amount of money for tickets, I would be fully irked. I might at least ask for tickets for another night or my money back. As the parent, I would be checking to see if there was seating more conducive to my child's needs, but maybe in this case, there wasn't any. Tough line to walk.
http://thislifeinwriting.blogspot.com/2008/12/audienceparticipation.html
This was my comment to her post:
As a mother of two autistic kids, you can imagine I have some pretty strong feelings about this. I apologize in advance for the mega long comment, feel free to delete me. So fortunate for me that my kids are high functioning enough to be able to participate in most age appropriate activities without much incident, but I have certainly met plenty of parents who travel in the same circles who aren't as lucky. And I still have to take care of a lot of details that people without special needs kids can't understand in regards to social events. Solutions are really tough.
For one, we definitely need to be better as a society when it comes to inclusion for all of our members who have special challenges, the elderly and physically challenged are very often left out in this way also. Less than forty years ago, there were no public schools for children with special needs, and yet all of us pay taxes into the system. We are definitely talking about institutionalized discrimination, this attitude for sure bleeds over into the private sector.
But the experiences need to be tailored to the individual as well. Just as you would probably not take a newborn baby or a toddler to a swanky restaurant, I would not put my boys in the position of being somewhere that they couldn't appreciate or are unlikely to behave appropriately. You should definitely consider the needs of the performers or the other patrons. For instance, we all love the library, but it is only considerate to be relatively quiet there. My kids are over stimulated by the presence of too many other people, so I go out of my way to take them when I know traffic is going to be lower, and we patronize specifically libraries that cater to children. The problem for us is finding those kind of resources in other kinds of social environments.
In the specific case you were describing, no one on the outside can really judge whether or not this young man was able to truly appreciate your show, but I'm willing to bet the people around him drew an unfavorable conclusion. Few people take the time to learn about special interests that don't affect them personally. I love that you're even thinking about what he might gain from it Jess. I still think about you coaching my oldest boy in the first ever VCF Children's choir, he loved that. I don't usually encourage him to participate in things like that because most of the adults in charge are not tolerant enough.
When my oldest son was little, I took him to plays that were targeted just to small children. I didn't take him to a general audience play (Oklahoma) until he was seven, and even that was approaching the boundaries. I generally pick seats on the aisle in case we need to make a hasty exit. Half way through he got up and started walking toward the stage while the play was still in progress, because he wanted to see how the set was made.
It's such a hard line to draw - we have standards set, and necessarily so, of how people are supposed to behave in certain situations in order to be considerate of the others around them. Yet if an individual is UNABLE to meet those standars, should they always be left out? In a civilized society, I would hate to draw that conclusion.
Jason's idea of special performances to accommodate special groups are WIDELY popular in those communities, yet this option is often not considered. Disneyland has a "gay" night in their park on occasion. Sesame Place has two dates per year that cater especially to children with disabilities, one specifically for autism. You could consider that bad or good; is that inclusion, or is it just another form of discrimination? Aren't we supposed to be working towards acceptance, not segregation? I think there is a strong argument that those special occasions DO demonstrate acceptance, at least for now, because the people who participate are actually more comfortable in those forums as opposed to being "mainstreamed."
I will tell you that I would gladly take my boy to see ACL if there was such a special performance in Philly (if I could afford it!)
My family participated in a week long christian family camp this last summer that was a huge deal for us. The preparation I went through for it was enormous. I felt comfortable making that choice because the counselors were already trained to accommodate campers with special needs, boasting not only a "special needs" week for the mentally challenged, but just the week before our "family" camp, they had a week of autism day camp including children who attended with personal care workers. That had been a really sensitizing experience, and by the time my family showed up, the counselors were very enthusiastic to put their new skills to work. I had attended this camp myself as a child, and I know without the combination of all those variables, I would have unlikely felt comfortable attending.
One thing that really drew me to VCF Barn when I was in the market for a new church back in 2004 was the parents' rooms where one could breastfeed and care for young children while still participating in the service without disrupting it. As it turned out, the constant stream of traffic in and out of the office behind it made it semi chaotic. I was looking forward to the new room built in the new church where the service could be viewed without sharing function with administration. Yet I heard recently that the room was changed to a drop off nursery, so if a parent wishes to nurse a child, they now do so in locations without visual attachment to the worship service. I think that's a shame, but I know when there is limited space and resources, you try to take care of the majority of perceived needs of your congregation.
That's very often the kind of philosophy that finds people with special needs on the outside. I always used to be aggravated when Spock (and here I reveal myself as a closet trekkie) of Star Trek fame used to say "the needs of the many outweigh the needs of the few." That very much marginalizes the same members of society repeatedly. Aren't we more enlightened than that?
A few years ago another old church nearby that my extended family had attended for generations got a new pastor, and he quickly shut down the Sunday night service for lack of heavy enough attendence. I was disgusted with him because I knew at least one person in particular who attended such a service because it was the ONLY way she could. Had the pastor taken her into consideration?
I couldn't help but think of God's promise to Abraham not to destroy Sodom and Gomorrah if he would find even just ten souls that weren't wicked there. I feel pretty sure that if Abraham had kept wittling down the number to even one, that God would have still agreed to spare the cities because he values us all so much. I had at least hoped that the pastor would figure out another way for this one member of his congregation to get her needs met.
For us, I know that large churches exist that have a "noise" room with glass, and that is an option that my ancestors didn't have, so I should be grateful. I attended one such service at Calvary in Orange County CA. But I can't help but feel that my children will be better served in a small church environment than a mega one for which we would have a very long, wearing drive anyway. My goal is for them to participate and build relationships in their own local community as much as possible.
Hopefully this issue, like the environment, is starting to take greater priority in the age to come. I know that with autism on the rise specifically at an astronomic rate, it's an issue that will have to be dealt with. Recently I read a newspaper article written the year after the 2000 census that reported that fifteen percent of school age children now require some kind of special education services. That's roughly one in seven. The autism epidemic is only adding fuel to that fire.
It seems so wrong for me to be happy that there will more likely be more inclusion opportunities for my kids in the future when that probabilty is based on the increased rate of disability. Hopefully we will not only be more sensitive about inclusion and acceptance, but will be inspired as a society to look harder for the causes of why we have so many special needs in the first place.
Why does this issue matter so much? Because the extent to which the "least of these," our brethren, are included in our society often impacts in great ways their level of functioning and contribution. I think you were right to speculate what positive effect ACL might have on him. We can't know, but it might be a lot, especially if it's part of a cumulative effort. And the kind of effect it has ones who accept is profound as well. The people who take care of and include special needs people are changed in ways they can't imagine.
My oldest is now a teenager, and I know that college, career, marriage and family are all possibilities for him if only he gets the right kind of socialization NOW. Recently I was praying about finding a Youth Group environment for him which he might be able to attend independently (meaning without me or his father for a change, although we would still be willing to do that too) with the right kind of leadership and concern from the other participants. Developing independence is so very critical. A month or so later an invitation to youth group popped into my email inbox and I thought, "well lord, is this the answer?"
I contacted the youth leader and explained the situation, and he asked for some time to pray on the situation. It's been two months, and I've had no reply. Not a yes OR a no, or a "we're still thinking about it" or "we need more information."
Sadly, this is a frequent kind of occurence. People are very uncomfortable with this issue, they hate to say no, but they are afraid to say yes. This happens to us and others similarly situated all the time, especially when faith based organizations are involved. And I understand completely. It's a tough line to walk.
Even with two autistic kids, I know that if I sat next to a very disruptive audience member (have done that with drunks and druggies at rock concerts) and had paid a massive amount of money for tickets, I would be fully irked. I might at least ask for tickets for another night or my money back. As the parent, I would be checking to see if there was seating more conducive to my child's needs, but maybe in this case, there wasn't any. Tough line to walk.
Friday, November 28, 2008
who we are
Silk is my name on this blog, it is merely the phonetic sound of the combination of my initials. I am parenting three kids with developmental challenges; 2 bio, 1 borrowed from a cousin. I have heard this referred to as kinship care in the foster care field, but we don't get any board payments, so I'm not sure it's properly used terminology.
I gave birth to my oldest son in 1993; he has asperger's syndrome which wasn't officially diagnosed until 2007. I refer to him as DS (dear son), DS #1, T or T-bone. There might be others, but that's what I remember right now.
I asked T-bone to occasionally write some blog entries with me; he has dysgraphia (has a hard time physically forming letters with a writing implement) and composition is something he really struggles with also. I thought the blog would be a good exercise for him. Even though writing is difficult, he reads like a fiend and has advanced skills in that area.
T's development was average or above average up until age five when he had several vaccines administered at once and immediately regressed to the point where he was diagnosed with symptoms of autism. At the time, my husband and I were unconcerned about this as the damage to his immune system was a much greater concern.
T was very sickly for a year after the vaccine overload, and rather than continue to pull him out of pre school constantly, we decided to home school him. He was exclusively home schooled up until fall 2005 when we enrolled him in a cyber school. This method of instruction is also delivered in the home.
I believe that T was genetically predisposed to be autistic; though there is no doubt in my mind that the vaccines triggered the severity of his symptoms. We were very blessed to be near a doctor who specialized in treating autism as a condition that could be "fixed." I don't know if he's had any complete reversals, but his protocol definitely helped repair T's immune system and move him toward the higher functioning end of the spectrum. This was a MEDICAL protocol; it involved no psychology or behavior management.
T believes that he will be able to finish college, have a career, and a normal family life. He likes creating stories; and wants to make films and video games.
In 2001, my husband, DS #1, and I moved from California to Pennsylvania. I continued the home school program and gave birth to a second son early in 2002. At that point, my cousin asked me to home school her daughter (born 1987) whose own problems were unadressed in the public school system. She has lived with us ever since. I refer to her as DD (dear daughter), OCD girl, and probably a few other things.
DD developed such severe school anxiety after years of trying to cope with OCD, panic attacks, claustrophobia and agoraphobia, without any services or accommodations, that she refused to return to school in eighth grade.
DD, after a combination of home school and cyber school, now has a high school diploma. She started her first college sponsored course in Fall 2008, and eventually wants a career in special education.
Due to the reaction that DS#1 had to vaccines, we decided NOT to vaccinate DS#2. I also refer to him as D. We are NOT anti-vaccine. We just believed that the risk benefit analysis did not merit vaccinating DS#2. I intended to home school DS#2 as well to avoid the risk of exposure to infectious disease in the younger years. But even if I was to place him in a class room setting in the future, I believe the relatively high vaccination rate of the other school age children will protect him in that kind of environment.
Though I have not had a formal evaluation yet, it is clear that DS#2 also has developmental delays. I am almost certain it will prove to be Asperger's Syndrome, just as DS#1 has. Which leads us to....
Through the examination of symptoms that his children have, and the formal evaluation that DS#1 had last year, it has become apparent to my husband that he himself has Asperger's Syndrome. He was formally diagnosed with attention deficit disorder as a fully grown adult in his forties, but we know now that it is only one of many symptoms that add up to Asperger's. He intends to find a neuropsychiatrist who specializes in diagnosing adults, which is a little tricky, so that he can pursue some of the beneficial therapies. Such as learning to communicate better, especially with his wife.
I gave birth to my oldest son in 1993; he has asperger's syndrome which wasn't officially diagnosed until 2007. I refer to him as DS (dear son), DS #1, T or T-bone. There might be others, but that's what I remember right now.
I asked T-bone to occasionally write some blog entries with me; he has dysgraphia (has a hard time physically forming letters with a writing implement) and composition is something he really struggles with also. I thought the blog would be a good exercise for him. Even though writing is difficult, he reads like a fiend and has advanced skills in that area.
T's development was average or above average up until age five when he had several vaccines administered at once and immediately regressed to the point where he was diagnosed with symptoms of autism. At the time, my husband and I were unconcerned about this as the damage to his immune system was a much greater concern.
T was very sickly for a year after the vaccine overload, and rather than continue to pull him out of pre school constantly, we decided to home school him. He was exclusively home schooled up until fall 2005 when we enrolled him in a cyber school. This method of instruction is also delivered in the home.
I believe that T was genetically predisposed to be autistic; though there is no doubt in my mind that the vaccines triggered the severity of his symptoms. We were very blessed to be near a doctor who specialized in treating autism as a condition that could be "fixed." I don't know if he's had any complete reversals, but his protocol definitely helped repair T's immune system and move him toward the higher functioning end of the spectrum. This was a MEDICAL protocol; it involved no psychology or behavior management.
T believes that he will be able to finish college, have a career, and a normal family life. He likes creating stories; and wants to make films and video games.
In 2001, my husband, DS #1, and I moved from California to Pennsylvania. I continued the home school program and gave birth to a second son early in 2002. At that point, my cousin asked me to home school her daughter (born 1987) whose own problems were unadressed in the public school system. She has lived with us ever since. I refer to her as DD (dear daughter), OCD girl, and probably a few other things.
DD developed such severe school anxiety after years of trying to cope with OCD, panic attacks, claustrophobia and agoraphobia, without any services or accommodations, that she refused to return to school in eighth grade.
DD, after a combination of home school and cyber school, now has a high school diploma. She started her first college sponsored course in Fall 2008, and eventually wants a career in special education.
Due to the reaction that DS#1 had to vaccines, we decided NOT to vaccinate DS#2. I also refer to him as D. We are NOT anti-vaccine. We just believed that the risk benefit analysis did not merit vaccinating DS#2. I intended to home school DS#2 as well to avoid the risk of exposure to infectious disease in the younger years. But even if I was to place him in a class room setting in the future, I believe the relatively high vaccination rate of the other school age children will protect him in that kind of environment.
Though I have not had a formal evaluation yet, it is clear that DS#2 also has developmental delays. I am almost certain it will prove to be Asperger's Syndrome, just as DS#1 has. Which leads us to....
Through the examination of symptoms that his children have, and the formal evaluation that DS#1 had last year, it has become apparent to my husband that he himself has Asperger's Syndrome. He was formally diagnosed with attention deficit disorder as a fully grown adult in his forties, but we know now that it is only one of many symptoms that add up to Asperger's. He intends to find a neuropsychiatrist who specializes in diagnosing adults, which is a little tricky, so that he can pursue some of the beneficial therapies. Such as learning to communicate better, especially with his wife.
Thursday, November 27, 2008
husband survey
1. He's sitting in front of the tv, what is on the screen? most likely the sci fi channel.
2. You're out to eat what kind of dressing does he get on his salad? None - if we go out to eat, the last thing he wants to do is pay for a salad.
3. What's one food he doesn't like? vegetables.
4. You go out to the bar, what does he order? nothing alcoholic. this is something I love about him. If we DID actually go to A BAR, he would order some kind of fruit smoothie if he was getting fancy, otherwise a coke.
5. Where did he go to high school? Carson CA. Why would anybody want to know this unless it was an identity theft kind of thing? What does this proove? Why wouldn't I know where he went to high school? Ask something a little more interesting please.
6. What size shoe does he wear? 7 1/2.
7. If he was to collect anything, what would it be? Junk mail. by default, he collects anything he doesn't want to have to make a decision about keeping or chucking. This includes receipts and mail, any kind of documents, worn out clothes. He used to collect comic books and magic the gathering cards.
8. What is his favorite type of sandwich? roast beef
9. What would this person eat every day if he could? chinese food, or anything with fried rice
10. What is his favorite cereal? Lucky Charms, Count Chocula
11. What would he never wear? a tie, unless forced to by gun point
12. What is his favorite sports team? NONE. Do you read this people? I am the luckiest non sports widow in the world. His favorite sport is martial arts, followed by volley ball. He would rather do them than watch them.
13. Who will he vote for? Well he wanted to vote for Ron Paul, like me, until he dropped off the ballot. So then we weren't sure what to do, because we don't care much for either the Republican or Democratic parties. But then he said, "I think I'll vote for Obama because I'm so sick of hearing people call him 'n1@@*r'. Gotta love that man.
14. Who is his best friend? Me. I mean that. I wish he kept in touch with his old friends more. Next I would pick David, who is our son's godfather. But my dh has a very hard time maintaining friendships. Most people have to meet him more than half way.
15. What is something you do that he wishes you wouldn't do? Make him leave the house occasionally and socialize with others.
16. How many states has he lived in? two, and a trust territory, and a foreign country too.
17. What is his heritage? Filipino - again, what wife doesn't know this about their husband? PUH-lease.
18. You bake him a cake for his birthday; what kind of cake? Fudge brownies with powdered sugar icing and crushed oreos.
19. Did he play sports in high school? martial arts and volleyball, but not FOR his high school
20. What could he spend hours doing? Playing rpg video games or sci fi channel marathons.
21. Favorite color? I don't think he has one. He wears a lot of black and dark blue.
22. What kind of music is on his car stereo presets? None. I'm guessing they are all talk radio.
23. Does he read books/magazines and if so what kinds? Books and magazines, though mostly books. Mostly of the sci fi variety. At least a couple new ones a month. The magazines are probably gaming or computer graphics related.
24. You are in a stadium/hall with your husband. Is it a conference, a sporting event, a concert, or a play/musical? Probably a concert. He's not a fan of big crowds though. He listens to music he would never see live due to the scary fans.
25. He gets to pick his ideal vacation - what is it? Locked in the house with his computer and cable tv. If he HAS to leave, it would be somewhere warm (with an air conditioner nearby) where he can sit on his butt, read a book, and take an occasional swim, and not have to talk to people. If I'm there, then he is also naked in bed a lot.
26. What does he really think of his mother in law? He doesn't have deep relationships with most of our relatives, but he gets along with her just fine. He knows she is a little nutty. He invited her to live with us once, so I guess that's a good sign.
27. How does he truly feel about religion? Well, he believes, but sitting in a crowded church or reading scripture is not his idea of a good time. He was born into a catholic family, and he has an aversion to organized religion or very judgmental people.
28. He gets to start over again in picking a career - would he keep the one he has, or choose something else? Would probably pick something close to what he has, maybe with more of an artisitic flair. Though I'm pretty sure he would have done college completely differently.
29. If you have kids, do you thinkg he would still if he got a do over? If you don't have kids, do you think he wishes that you did? He wanted kids so badly that even though he was totally surprised by what it was actually like, I think he'd still have at least one. I think he just wishes he had been more prepared, more financially stable since I got very sick when our first kid was born, and it was financially devastating.
30. If you guys could go back in time to before you got married, would he still want to? HE would. I think I would have made him live on his own for a little while first instead of going from his parents house to my house.
2. You're out to eat what kind of dressing does he get on his salad? None - if we go out to eat, the last thing he wants to do is pay for a salad.
3. What's one food he doesn't like? vegetables.
4. You go out to the bar, what does he order? nothing alcoholic. this is something I love about him. If we DID actually go to A BAR, he would order some kind of fruit smoothie if he was getting fancy, otherwise a coke.
5. Where did he go to high school? Carson CA. Why would anybody want to know this unless it was an identity theft kind of thing? What does this proove? Why wouldn't I know where he went to high school? Ask something a little more interesting please.
6. What size shoe does he wear? 7 1/2.
7. If he was to collect anything, what would it be? Junk mail. by default, he collects anything he doesn't want to have to make a decision about keeping or chucking. This includes receipts and mail, any kind of documents, worn out clothes. He used to collect comic books and magic the gathering cards.
8. What is his favorite type of sandwich? roast beef
9. What would this person eat every day if he could? chinese food, or anything with fried rice
10. What is his favorite cereal? Lucky Charms, Count Chocula
11. What would he never wear? a tie, unless forced to by gun point
12. What is his favorite sports team? NONE. Do you read this people? I am the luckiest non sports widow in the world. His favorite sport is martial arts, followed by volley ball. He would rather do them than watch them.
13. Who will he vote for? Well he wanted to vote for Ron Paul, like me, until he dropped off the ballot. So then we weren't sure what to do, because we don't care much for either the Republican or Democratic parties. But then he said, "I think I'll vote for Obama because I'm so sick of hearing people call him 'n1@@*r'. Gotta love that man.
14. Who is his best friend? Me. I mean that. I wish he kept in touch with his old friends more. Next I would pick David, who is our son's godfather. But my dh has a very hard time maintaining friendships. Most people have to meet him more than half way.
15. What is something you do that he wishes you wouldn't do? Make him leave the house occasionally and socialize with others.
16. How many states has he lived in? two, and a trust territory, and a foreign country too.
17. What is his heritage? Filipino - again, what wife doesn't know this about their husband? PUH-lease.
18. You bake him a cake for his birthday; what kind of cake? Fudge brownies with powdered sugar icing and crushed oreos.
19. Did he play sports in high school? martial arts and volleyball, but not FOR his high school
20. What could he spend hours doing? Playing rpg video games or sci fi channel marathons.
21. Favorite color? I don't think he has one. He wears a lot of black and dark blue.
22. What kind of music is on his car stereo presets? None. I'm guessing they are all talk radio.
23. Does he read books/magazines and if so what kinds? Books and magazines, though mostly books. Mostly of the sci fi variety. At least a couple new ones a month. The magazines are probably gaming or computer graphics related.
24. You are in a stadium/hall with your husband. Is it a conference, a sporting event, a concert, or a play/musical? Probably a concert. He's not a fan of big crowds though. He listens to music he would never see live due to the scary fans.
25. He gets to pick his ideal vacation - what is it? Locked in the house with his computer and cable tv. If he HAS to leave, it would be somewhere warm (with an air conditioner nearby) where he can sit on his butt, read a book, and take an occasional swim, and not have to talk to people. If I'm there, then he is also naked in bed a lot.
26. What does he really think of his mother in law? He doesn't have deep relationships with most of our relatives, but he gets along with her just fine. He knows she is a little nutty. He invited her to live with us once, so I guess that's a good sign.
27. How does he truly feel about religion? Well, he believes, but sitting in a crowded church or reading scripture is not his idea of a good time. He was born into a catholic family, and he has an aversion to organized religion or very judgmental people.
28. He gets to start over again in picking a career - would he keep the one he has, or choose something else? Would probably pick something close to what he has, maybe with more of an artisitic flair. Though I'm pretty sure he would have done college completely differently.
29. If you have kids, do you thinkg he would still if he got a do over? If you don't have kids, do you think he wishes that you did? He wanted kids so badly that even though he was totally surprised by what it was actually like, I think he'd still have at least one. I think he just wishes he had been more prepared, more financially stable since I got very sick when our first kid was born, and it was financially devastating.
30. If you guys could go back in time to before you got married, would he still want to? HE would. I think I would have made him live on his own for a little while first instead of going from his parents house to my house.
Sunday, October 26, 2008
is it a serious illness?
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.
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.
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?
Sunday, September 28, 2008
whenever I feel like whining (which is often)
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.
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.
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