Thursday, May 11, 2006

Thimerasol Fascists

OK, this is my peeve of the day: thimerasol fascists.

When one is dealing with other parents of children with autism, you find a large pool of people who are depressed, in shock, in disbelief, scared, worried, exhausted (both physically and emotionally), angry (or as my son would insist, "furious"), and generally in not good shape. And those are the folks who have been dealing with this for a while- the people who are just getting into this with this diagnosis are in worse shape. You end up meeting a lot of people who insist that what happened to their child and what works for their child is what happened to and will work for your child. Unfortunately, some of these things are not useful for Joey, would be dangerous, or are simply bogus in the first place.

I can understand wanting to DO SOMETHING. That is one of my mechanisms for coping, too. When the doctors are telling you to try medicines, diets, shots, exercises, therapies... you try them. I can also understand wanting to share strategies that work for your child with other parents. That's very kind and helpful, and a compassion for other people. But I do not understand people who not only insist you do what they do, or believe what they believe, or experience what they experience, but get downright ugly about it when you don't.

The worst of these for today are the thimerasol fascists. These are the people who believe that thimerasol is to blame for autism. Thimerasol is a preservative that is/was used in vaccinations, and it contains a type of mercury that drug companies insist is harmless (as opposed to the kind that makes you Mad as a Hatter). Personally, I think anyone who thinks putting mercury into a child's system is a good idea is just plain nuts. Even if is was safe to do, most folks don't know there are different kinds of mercury, and the perception of danger alone would be enough for me to question its use. However, I seriously doubt it is safe. It is still used for flu vaccinations.

However, I knew thimerasol was bad news when I was pregnant. Joey has never had any. NEVER. NONE. He never had a flu shot, because he's allergic to eggs. My doctor and I discussed the problem and she had stopped using vaccines with thimerasol in them before Joey was born. Thimerasol did not cause Joey's autism.

Thimerasol fascists don't seem to care about Joey's lack of exposure. To them, thimerasol is the problem, the rest of us be damned. I'm not saying thimerasol isn't a problem. I'm not saying that mercury exposure is not a cause of autism. I'm not saying there doesn't need to be a push to end its use. I'm just saying it isn't the only cause. We need to look at all the causes of autism, all the strategies for treating it, and do what needs to be done for our children- ALL of our children. Research needs to explore not only thimerasol and mercury poisoning, but other possibilities- genetic problems, other environmental factors, even possible causes during pregnancy.

Thimerasol fascists are closely following on my peeve list with Diet Fascists (who insist that ALL autistic children need to gluten and casein free), ABA Fascists (and Joey gets ABA therapy, so I know it works for us- but for everyone? I'm not convinced), and Medicine Fascists (sorry, Joey is not on any medications for his autism. He doesn't need any.). If these things work for you, then fabulous! I'm glad for you! But getting nasty when I say Joey is not in 40 hours of ABA therapy per week, eats bread and cheese, and doesn't take any medicines is really not necessary. Honestly. He's my kid, and I'll do what works for HIM.

Another day, another sleepless night.

I have a horrible habit f wakin gup about one in the morning with the realization that no one is going to help Joey. The school personnel couldn't care less- in fact, they seem to be actively trying to deny Joey services that everyone else says he needs. I hired some private therapists, but they seem more interested in their paperwork than in tailoring a program from Joey's training and education. I am not a trained speech or occupational therapist or special educator.

When I was in India, I had an IndRail pass. There was extensive flooding in an area I was scheduled to visit. I went to the train office to change my reservation, and the people there told me incedulously that since I had an IndRail pass, I could get on and off the train at will, what was I bothering them for? Just tell the conductor I wanted to stay on the train, no problem. They refused to change my reservation. When I did as I had benn told and mentioned to the conductor that I wanted to remain on the train past my reservation stop, I was told this was impossible, I *had* to get off the train, IndRail pass or no. In the end, after being nice, being polite, being firm, being slightly sharp, I finally had to scream, cry and stomp my feet for them to do what I was told was not only the possible, but the only option. I find throwing a fit to be rude, dehumanizing, undignified, and embarrassing. However, getting off teh train at my original stop was putting my life- and the lives of my traveling companions- at great risk. I did what was needful, and will never forget. Was the conductor to blame, or the people in the train office? The attitude at the train office seemed to be that why should they work when I, as a westerner, could scream and yell at teh conductor to get what I wanted? But to me, forcing me to scream and yell is the ultimate insult. It shows clear disrespect not only for me, but for that train conductor, who was doing his job; the train office people had the power to change the reservation and avoid the problem, and chose not to.

School personnel are like train office people in India. They only do what you scream, stomp, cry, and yell for. They complain about parents not coming for meetings, but considering the abuse *I* get at IEP meetings, I can't say I blame other parents for saving their sanity and not wasting their time on them. I came to teh last meeting with a letter from Joey's doctor, the latest research on autism, and an analysis of Joey previous educational experience, as well as the extra training in autism and strategies for autism provided by teh department of education. All of these were promptly dismissed as "not individualized." Excuse me? Is my doctor not an appropriate expert on my child? Is my only real option to put my child in a specialized, private school? There is something inherently wrong with a special education system that has no intention of providing students with the same opportunity at independent living that is provided to "normal" students. The goal of special education here seems to be to keep kids- especially high-functioning ones- in special education.

So I lay awake at night realizing this time next year, I will be stomping my feet, losing sleep, and spending whole days in tears over the definition of "Least Restrictive Environment" and the fact that the school would rather my child rot in a ditch than provide his teacher with a paraprofessional (to the lay world, an aide) to help him/her teach Joey the basics of kindergarden curriculum. Joey's problem is not socialization- he LOVES other kids and WANTS to play and please his teachers- his problem is communication. Its a gap that could well be bridged with the simple addition of a paraprofessional to the classroom, so that Joey's communication problem do not interfere with the education and experience of non-disableed children in his classroom. In fact, such a paraprofessional would be good for everyone in the classroom- they help the teacher, not the individual student. But I want Joey;s teacher to have one, I will probably have to hire a lawyer. I'm sorry, that's just wrong. I need that money to provide Joey with extra therapies at home, so that he won't have to be in special education forever. I do my part. Why can't the school do theirs?

Wednesday, May 10, 2006


One good thing about Joey is that he loves school... but even more than that, he loves the bus. When he got on the bus for the first time- can it be a whole year and a half ago?- he looked SO little. Moms of 2 1/2 year olds shouldn't have to be putting their children on large yellow school buses. We followed the bus all the way to school, and took photos of him getting off. I miss our preschool teacher. The lady we have here now is not very friendly, and because I have Andy, she actively excludes us from Joey's life. Last year, our teacher actively INCLUDED us- Andy and all. After all, Andy is part of Joey's life everywhere, not just at home. Joey also loves Andy SO much. He's loved Andy ever since the moment he beeped the baby's nose in the hospital- love at first beep.

Anyway, Joey loves buses. He has a little one he carries around with him. He has several matchbox sized ones, and those are OK; and he has an FP one, and that's cool, because it sings, but then there is Bus. Joey has been known to sleep with Bus, takes Bus on adventures, and always feels better when he has Bus in hand. Right now he is leaning his head against my side, watching his Blue's Clues, clutching Bus. Yes, even in our lives, there are moments of normalcy. :)

Andy has figureed out the word bus, too. He loves to point to all sorts of buses, and yell "BUS!" But for Joey, there is really only one Bus. And it's yellow.

Tuesday, May 09, 2006

What's in a word

I will never forget the day the word "autism" became part of my life.

I was sitting in a small, windowless room, trying to keep my three-month-old baby from crying by rocking his stroller, watching my two-year-old baby not react to anything the speech pathologist was doing. He had picked up a small car that she had gotten out of a little showbox, and nothing she did could detract him from it. She rang a bell behind her back- no reaction. She asked him questions. Nothing. She asked him to feed a bear, play with another toy, hand her an object. Nothing.

The adventure had actually begin two months before my second son was born. Joey had been quite the star at each of his check-ups; every milestone the doctor had asked about had been acheieved with flying colors. He always smiled, laughed, and seemed to be a happy kid, sitting on the examination table or opening all the cabinets and slamming them closed. His two-year appointment was markedly different. For one, Joey had taken to being fascinated with the edges of things, and wandered about the room with his eyes less than an inch from the edges of the countertops and windowsills. But all kids have eccentricities, right? Then came the big question: was he talking?

Joey never spoke. Before you launch into your favorite my-cousin's-best-friend's-first-child-didn't-talk-until-he-was-four story, unless that child had a serious speech problem, it isn't the same thing. Most kids who speak late say things like "mama" and "dada". They point to objects they want. They pull on your pantleg and let you know they want a cookie. If they are hungry or thirsty, they let you know its time to eat. They wave bye-bye. Joey did not do any of these things. He was just as happy to shop all afternoon, even if lunch was late. He had never pointed to anything in his life. If he was unhappy (especially if we were encouraging him to speak for a treat or redirecting him from an activity), he would prostrate himself on the floor in a howling tantrum we called the "I'm Not Worthy". If you waved at him, he looked at you like you were nuts. This child did not just "not speak"- he did not communicate.

However, he was clearly a happy, affectionate little guy. He would hug and kiss me if I asked him to. He made facial expressions, he laughed, he threw his toys around. He wasn't doing things like jumping, but kids develop at different rates, so there was no real alarm. The doctor told us to see if the birth of the baby would have any effect- perhaps having a need for attention would spur him into speaking.

At the baby's six-week check-up, things were not just not better, but they seemed to be getting oddly worse. He was still a happy little guy, but a quieter little guy who smiled less. He still loved edges, spinning balls (which he did himself), and slamming doors. We decided we needed some help- we were obviously spoiling him, and we could use some pointers for how to get him talking. Off to the speech pathologist!

Which brings us back to me rocking a stroller, watching my son ignore said speech pathologist. She looked up at me.

"I don't know you," she explained with an odd look on her face that made me uncomfortable. "How blunt do you want me to be?"
"You might as well be blunt," I had responded, as if the words were coming from somehwere about four inches behind my head. She thought for just a moment. That pause marked a change in my life, in my sons' lives, in our whole future. It was the calm before the storm.
There were other words that emerged from her lips, but the ones I will always remember were: "Your son is either profundly deaf, or profoundly autistic."

I am an educated person, In fact, I have two master's degrees and a PhD. When I got pregnant, it was done with careful planning and education; my husband and I read books about child development, child psychology, parenting, and pregnancy. We took courses on breastfeeding, first aid, and parenting. We made the choice to have children; an educated, informed choice. We even knew there would be a second child, because the research we knew indicated that having a second child was a benefit to both children.

Nowhere in anything we read, any class we took, any website we examined, had we come across autism as any more than a passing possibility. We knew enough about it to ask our doctor about Joey's vaccinations and thimerasol, but that was about it. It was a word that was relegated to the shadows of statistical improbability. We had no family history of problems. Joey had no thimerasol shots. He head grew normally. He was happy and affectionate. There were no red flags for us, until the flag was slapped in my face on August 31, 2004.

So this blog is about living with autism. My Joey is not just an autistic child; autism is a fact of our entire family. It pervades our lives in a way that can only be compared to the way having a child in and of itself pervades your life. Its like the toys that lay scattered not just in the bedrooms, but also in my livingroom, my kitchen, my diningroom, my bathrooms, and even what was once our basement recroom (and is now Joey's therapy room). Even our front porch, back deck, and yard have the presence of toys. Trying to put them away is useless; I might be able to fool someone for an afternoon that I don't have small children, but why would I? Even when everything is put away, you turn around and step on a matchbox car. They live here.