Me and the Boyz

Monday, December 12, 2005

Have you ever lost something and not noticed that it was gone?

Well, that is kind of the situation with me regarding TJ's autism. He used to do things that he doesn't anymore, but you remember that he did them at some time and just hasn't lately; it slips you mind--no big deal, right? Wrong. Really big deal.

Sometimes you don't remember something was lost until you find it again. I feel really lucky because I "found" some things today. Today I found kisses. I hadn't realized TJ hasn't kissed Mommy for probably at least year now. He's been very affectionate, huggy, and hand-holding--but no kisses. We were rough-housing on the floor this morning and I get his version of "kisses." They are a little toothy but friendly and exactly as they were as I last remember them. I didn't know how much I missed them. Ten-month old JW also decided kisses for Mommy were the way to go so I got lots from him too. It was so sweet.

Other amazing (to me) events happened in my day: I got up this morning with TJ, groggy from a busy teething night with JW. We go to the bathroom and I tell TJ we'll go get a diaper. He's half changed, grabs the new diaper and says "diaper!" proudly. The thing is, for a long time now, I've really had to pull words from him, and he's never said "diaper" before. He also said a few other words that I had either never heard from him at all or haven't heard for almost a year. The greatest thing is that twice today JW took his toys. The first time TJ yanked it back with an irritated "no." The next time he yanked it back with an irritated "mine."

Not to rejoice in TJ's bad manners, but this is the first time he has acknowledged his little brother. When toys were taken previously, he either screamed or ignored it. He has been ignoring him in expert fashion. I'm overjoyed. Of course, I will eventually need to work on those manners!

They may seem like little things but they are huge to me. You may think I am still wallowing in denial and I am hallucinating or something, but no.

Almost a week ago I decided to try the GFCF (gluten and casein free) diet. I was hoping for the best and expecting the worst. I read the success stories about it but wasn't sure if they were real (you can read success stories at gfcfdiet.com). In the last three days TJ has had two normal bowel movements. Sorry if that's TMI but it is a first in at least six months and maybe a year. I credit the diet for his increased interest in people and interest in words. He's also more active and into more things, getting into trouble. He's also more temperamental. Could be the terrible two's or it could be withdrawal from gluten and casein--apparently that can last from one to three weeks.

So here's a very basic version of the theory of the diet. Some people cannot tolerate the proteins in milk and many grains so it goes undigested. Chemicals are released that can stay in the body and be toxic to some people. They cause celiac disease in some people. The chemicals act as opiates in the brains of people predisposed to autism, in effect, slowing poisoning them. It's like they are on morphine all the time. Casein comes out of the body fairly quickly, within a week or two. It can take months for gluten to get out.

So the diet is here to stay. I hope that with the diet and therapy, things will improve quickly. It certainly looks promising for now.

Friday, December 09, 2005

In our case, the differences between high-functioning autistics and "nt" (neuro-typical) are subtle.

In my most unscientific view, it is mostly a question of too much and too little. Too much interest in his surroundings and too little eye contact lead to not enough attention. Not enough attention leads to not learning as many things in the typical timeframes as he should. Of course it is infinitely more complicated than that, but that is the way I look at it.

The role of therapy will be to teach him to learn. Teach him to pay attention by looking at faces--everything else will come from that.

I've clamped down in the discipline department too. I stop any behavior that seems excessive. If a firm "no" won't work, a time-out is in order. I had always used redirection up to this point but I know in therapy this won't really do the job, so time-outs it is.

I know that most two year olds are just weird by design. I worry that I'm trying to make TJ behave like an older child when he is still really just a baby. But I have noticed some things that disturb me. He is way too interested in opening and closing things and spinning the wheels of toys. In the last couple of days, when he gets really pissed off at Mommy, he flaps his arms as he is protesting. Flapping is stereotypical of autistics.

Some of the behaviors might escalate between 21/2 and three years and some might fade away.

I could get a second opinion but I don't think there is a purpose to it at this point. Once he turns three I can take him to a psychologist instead of a developmental pediatrician. They have a cut-off at three years. The label doesn't change TJ but it will give us a tax break to offset a tiny amount of the therapy costs.

Like it or not, he is autistic. His situation may change over time and we will deal with it then. The label doesn't take anything away from him and doesn't force me to do anything if I don't want to do it.

Most research says that now the chance of autism is 1 in 160. I have read as much as 1 in 127. Older stuff says 1 in 1500. There may be more cases or there may be better detection. They have also broadened the definition. I read one article that said 20 or so years ago high-functioning autistics would just have either been ignored and maybe considered a little odd, or labeled as "gifted."

I enjoy observing adults around me and speculating who would be called autistic by today's standards. There are some websites out there that list famous people who have autistic characteristics.

So, what makes a 2-year old "autistic" or the pc term "on the spectrum"?

A diagnosis of autism in a 2-year old is done solely by observation in the doctor's office (in our case, just over an hour). Here are some of the questions/comments that led to the diagnosis, most of the first ones are crap, the ones at the end are legitimate:

-he's been in the office for an hour and hasn't wanted to play with me (the doctor yet). Any normal child would want to play with me. OK. I didn't want to play with the doctor. He didn't present as a fun guy with his serious tone and long white coat.
-Oh, he hates having his hair cut?
-Oh, he doesn't like having his teeth brushed either?
-Um, he likes numbers and can count to ten?
-Um, he likes letters?
-he is very attached to Mommy
-he was as good or better at puzzles than other kids in his age group
-he went to the toy table and played with toys for the whole visit
-he did the tasks that the doc wanted him to do and then went back to playing what he wanted to do
-he ignores his little brother and doesn't try to comfort him when he is upset
-he repeats the words he's learned on Sesame Street
-he doesn't often wave hello or goodbye
-he doesn't talk much yet (he has about 20 or thirty words but reserves most of them for Mommy)
-he doesn't point to what he wants; he prefers to lead Mommy by the hand to them
-he doesn't look strangers in the eye
-he doesn't always have great eye contact at home
-he dances when excited or angry
-he would not point to a picture of a dog when the doctor asked him

There are lots of assumptions about autistic people. Unless the autism is really severe, not all the symptoms are present. For example, TJ does NOT

-rock
-drool
-scream a lot
-act emotionally void
-act lethargic
-lack curiosity about people
-have any sensory problems (texture, sounds, light, etc)
-have any problem with transitions
-line things up
-bang his head
-act violent towards himself or others
-ignore any person around him
-have any routines or rituals that that he needs to follow
-have any item that he is attached to or fixated on

TJ does do the following:

-have poor eye contact, especially with new people (theis is a key trait)
-spins toys a lot
-like to open and close doors and drawers
-does not always play with toys the "right" way (as I write this TJ is pushing little car around his floor the "right" way)
-repeats some of the words or sayings he hears
-is not talking well yet and tends to use only single words

The problem with autism is that it reads pretty close to the description of the average two year old boy. I was talking to another autism mom yesterday and she summed it up well. An activity only becomes an issue if he does it too much or does it to the exclusion of other things.

The spinning habit bugs me. He does stop when I tell him to, though. He also will stop the door habit when told. He might get a little angry but quiickly gets over it.

The doctor told me that that he probably does not understand Sesame Street; that he can recognize Elmo on TV but cannot generalize him outside of that--just nice sounds and colors, is all. Except that TJ has Elmo clothes and toys that he readily brings to me and calls by name. He also said that things he knows aren't "real", like when he takes off his clothes before bathtime when I ask him to. The doc says that he does it because of routine. Except that he'll do it whenever I ask him--not just at bathtime. He says he doesn't really know his letters or numbers but is just cued by things like Sesame Street. Except that he was looking at alphabet cards today and started singing his ABCs...

I guess what I'm getting at is that I do understand that TJ is autistic.

But, I think the medical profession makes assumptions that just aren't accurate, based on ego or lack of knowledge . This is where a mother's instinct is stronger. I know what TJ can and cannot understand for the most part, and he understands a lot. He learns new words and uses them on a daily basis. He engages me, his dad, and the babysitter in play often.

He'll get therapy soon and I'm sure it will improve things. I know he would also improve on his own too--just not as effectively or quickly. Therapy is only going to hurt my wallet, not my son. Even a so-called "normal" kid could benefit from this kind of intervention, so I'm ok with it.

I was told by the OCTC that between two and three years a number of kids "fall off the spectrum" again, whether that get any intervention or not. I have read books that detail the complete recovery of autistic children. I'm hopeful and I'm stubborn. It's going to work out.

Thursday, December 08, 2005

It starts November 28th, 2005 at about noon:

The doctor--"Of course you know your son isn't developing like other children. Your son has autism. I'll get you a brochure."

I freeze in terror. I can't speak.

"Why didn't you bring your husband?"

"Because I didn't think you were going to tell me anything was wrong."

"So, will he be surprised by this? Well, he can call me if he has any questions. Do you have any questions?"

"My mouth says no. My mind screams--HOW DID YOU GET TO BE SUCH AN EGOTISTICAL ASSHOLE."

So I drive home in tears. I take TJ to Walmart for awhile so the babysitter for my ten-month old doesn't see that I've been crying.

That day I go over everything in my head and decide that denial is the best route. "The doctor thinks he's God. He doesn't know a fucking thing. He only saw TJ for an hour. I think my boy just doesn't like him. I know I don't." I fluctuate between rage and despair all day.

The next day I work on a plan. I call the OCTC and ask them about a second opinion. Not possible. Dr. D is the only one for the under three age group. I seek out a local online support group. I join, then lurk, but can't stop crying enough to tell my story. I'm starting to analyze TJ's every move.

I decide to post the next morning. I get an outpouring of support (including many posts that confirm he doctor is, indeed, an egotistical asshole with a God complex). The most disturbing thing is that nearly every one of them disagreed with the diagnosis when they hear it. TJ is under the microscope at all times now. I rationalize that almost every typical (I have learned that normal is not a word used in autism circles) little boy I know has the same behaviors.

Fast forward a few days...

I've spoken to moms of autistic kids; I've spoken to a social worker; I've single-handedly improved Chapters' December sales by an exponential amount. TJ is autistic. He certainly has some of the characteristics. That being said, it appears to be mild in his case. Treatment is available and will start as soon as I can get it in place.

There is no cure, he will always be autistic but his behavior can be managed. Because he is only 28 months old, he has an excellent chance of (dare I say) "recovery" maybe in as little as a couple of years. The therapy of choice is called Applied Behavior Analysis or ABA. The results have been good, especially when started as early as possible. I could have therapy funded by the government. Unfortunately, there are many waiting lists and I want to get this started ASAP.

His diet will change, at least for the short term. I am putting him on the GFCF diet. He can have no gluten or casein (milk protein).This diet has given many people great results. Other have had no success, but I think it's worth a try. I will have to try it for a few months to see if it yields any results.

We were going to start building our dream house this summer. We will still plan the build with the architect but leave the construction for another year. It seems so unimportant now.

Nobody knows what causes autism but there are a great many conspiracy theories floating about. Basically, an autistic brain is wired differently from the typical brain. Sensations and experiences are not processed in the same way as most people process them. I caution you about what you read on the internet, though. I find much of the information is reprinted from when they first discovered autism and they tend to speak only of severely autistic people.

So this is the beginning of my new quest. The most important thing in my life is my boyz and I will stop at nothing to ensure their happiness. I still wake up every morning hoping this is only a bad dream. I don't cry as much now but I still cry a lot. I wish I could take this away from him--give me some horrible terminal disease and set my boy free. We will triumph over this, though. TJ is still the perfect little boy that he was before I knew about this.

This won't be an easy journey but it is my journey.