Showing posts from 2010

Cure or Curse?

There is a lot of talk in the autism world about curing autism. Many, many parents spend thousands and thousands of dollars seeking a cure. Pills, vitamins, behavioral therapy, sensory therapy, OT, PT, Speech therapy, chelation, hyperbaric oxygen, diets devoid of gluten, casein. Diets containing only certain carbohydrates. Diets devoid of artificial dyes, colors, preservatives. Drugs for Alzheimer's, hormones secreted in pregnancy. Medications by mouth, shot, IV, intra-nasal, as a cream. If you've read my blog previously and thought we had tried a lot of things, you can see we just nibbled at the tip of the iceberg. People move across country, give up promising jobs to be near a certain school, or a certain therapy, or to stay home and work with their child themselves. I know of a doctor who believed so much in the hyperbaric oxygen, he purchased a unit for his house.

And yet many with autism, usually people who have Asperger's, are angry about the idea they migh…

I peed the bed last night

"I peed the bed last night."

Now why should those words make me happy and hopeful? For several reasons.

The overarching reason is they came from Nathan.

Nathan who says few words anyway, and when he uses them they often seem like a stim--something he repeats to himself for self-entertainment purposes only. These would be unusual stim words for him. A quick sniff of his dry pants told me they were not idle words.

Nathan who rarely talks about present events and almost never about past events. I think I could count on one hand how many times he has talked about a past event. The past and future are topics hard to grasp for most people with autism.

Even though he said them in the bathroom and I was outside the room, they were meant to communicate an idea to me. Something had happened to him. When I had sent him back into his room at 4am(without checking, although I admit I did try to make him pee--I cop an excuse of sleep deprivation after only 4 hours of sleep,) something …

A Piece of my Heart

I read once that becoming a parent was allowing a piece of your heart to walk around outside of your body. I think becoming a parent of a child with autism is having huge chunks of your heart routinely gouged out and hung on a spit over a roaring fire. It just doesn't appear as dramatic as it sounds. But, trust me, we parents are experts at hiding that kind of trauma. We have lots of practice.

One of the things a parent loves to hear is "I love you too mommy." And it is one of the things that a parent of a minimally verbal autistic child craves.

When we had Isaac, our 3rd and fairly normally developing (if extremely ornery at times) child, we were astounded to watch him do things that the other two never did or did profoundly late. Having him potty train at 3 was not early, unless you compare it to the 7 years it took the other 2. Man, 3 years worth of diapers and diaper changes avoided, priceless. Throwing a tantrum in WalMart because he wanted a toy? Excellent. …

Airport Brain

Have you ever been in an airport, or another busy place, but you're by yourself? So your brain decides to separate itself from it's surroundings. You feel separated from those around and there is a hum in your head. It is just an odd feeling. It's called depersonalization by the psych people. And this kind is very mild as opposed to the severe end associated with severe anxiety disorders and PTSD. But it happens to me sometimes when I'm shopping by myself or at a huge convention by myself. I can hear and talk to people and look pretty normal, but I just feel totally separated. Maybe it's just me being weird, but work with me on this idea.

Now imagine you are in an airport in a foreign country and there is the hum of Chinese or an Indian dialect, not an American voice to be heard. Your brain spaces out more as it seeks the familiarity of your thoughts.

All the restaurants serve food totally strange to you, and you are pretty sure that person is eating live …

Is it worse to stare or avert your gaze?

The last two days have been a bit stressful. We took the boys to Knoebel's on Thursday evening for swimming. We go there often during the summer, because it's reasonably priced and everyone can find something they like to do.

We've been following a bit of routine--eating at one restaurant right across from the pool and then going to the pool. A routine might be an extravagant way of saying it--we've done that twice. This time I wanted to go to a cafe farther away, because frankly there is nothing to eat that fits into Weight Watchers after I've used 20 of my 22 points for the day.

I tried to tell Nathan we were doing this, but my point did not go through. As we walked through the park, he began to scream his distressed noises. When we got to the cafe, he threw himself on the ground and screamed while we waited in line. Then he continued to scream and screamed louder when we tried to prevent him from picking dropped food off the ground to eat it. People stare…

On being humble

One thing I think autism teaches me is humility.

Of course, there is the general public humility. "My son was accepted into the advanced basketball camp" can just not be met by my boast of "Nathan managed to make it through day camp without biting anyone but himself." No matter how excited you are, you realize that boasting about your 7yo finally getting through the day without wetting himself just makes people stop and look strangely at you.

But there is also the humility within the autism community. There is so much "this diet/supplement/therapy worked wonders for my kid, and it can for yours too!"

We've done gluten and casein free diets. We've done the specific carbohydrate diet where the kids ate no cereal grains at all and we spent 45 minutes every night grinding up apples, pears and carrots to make a egg "waffles" the next morning. That's when we started buying eggs by the case.

I spent thousands of dollars to go to DAN! conf…
We have 3 kids: Sam, Nathan and Isaac.

Sam was diagnosed when he was 2year, 7mo with autism. Nathan was born 3 weeks later.

It was a stressful time.

As he grew, it became obvious that Nathan was on spectrum too and I was devastated. I had always wanted a large family and it seemed all I could obsess on was not having more children. Well, in addition to trying to fix what was wrong with my kids, it was all I could obsess on. Eventually, after 4 years, we did decide to have another. At the advanced age of 38, I had Isaac, now 4. And he is neurotypical, the outlyer in our family. The weirdo. Or the normal kid in a family of weirdos, take your pick.

While all of my kids have caused me to grow emotionally, Nathan pushes all of our buttons. All of the things that I feared, that I thought I could never deal with, he has taught me I can. Poop smearing? Thank god that hasn't happened for a few years. Self-abusive behavior? An evolving technique for him. Aggressive towards othe…