Saturday, November 11, 2006

The election

So in my "About me" section, I proclaim that I am - among many other things - "a Democrat - most of the time." (Last Tuesday it was about 65%.)I have a confession over which many die-hard Dems will probably faint: I am really, really sorry to see Senator Rick Santorum of Pennsylvania go.

He was the author of the Combating Autism Act and is one of autism's greatest supporters in Congress. He's fought for federal funding and clearly is behind increasing research being done and not wasting any more time. And he wasn't re-elected. It was nice to have a Republican on our side, as another Republican was holding up passage of this bill in the House. It wasn't a Red vs. Blue thing.

So I lift my glass to Sen. Rick Santorum and thank him for all his hard work and support. He will be missed. And I pray that someone will take up the fight and get this legislation passed quickly. One in 166 births today. One in about 120 boys born.

Potty training

This post is mostly going to be one long whine. I need to complain here. I promise that the complaining will lead to a positive ending, but I have to tell this story of struggle. I try not to complain or allow despair to set in too often...and I'm really good at it about 95% of the time. T is an angel child whom I love with every ounce of my being. But I really need to whine about this subject, and darn it, I think I've earned it.

Several posts back, I said that I would talk about T's potty training saga. This has been an ongoing source of stress, confusion, and until quite recently, despair for me. T has been able to "tinkle" (I know, only mommies use that word) in the toilet for at least a year now - almost always prompted - he rarely requests to go - but he can do it and that is a relief and a major milestone.

Potty training is a major issue for many kids with autism. T's challenge is exascerbated by his almost complete inability to imitate. Echoing language - no problem. But he does not learn a new task by simply watching another person do something. It doesn't occur to him. This is why I was so excited about The Itsy Bitsy Spider several posts back. (This is THE major skill area we are tackling with his Verbal Behavior program.) Another thing: kids with autism don't receive messages the body sends the brain in the same way as you or I. So they may not realize that they have to go, or even realize that they've already gone. Layer on top of that his struggles with understanding language (although he is making MAJOR, major progress because of the VB program), and we've got a challenge to say the least.

Okay, so let's say you have a child who doesn't understand language too well, that doesn't imitate the actions of others and whose brain doesn't always get the message that "I have to poop." Where on earth do you begin?

Start a potty schedule. Okay. Track bowel movements for three weeks, then find the pattern and time he usually goes and take him to the toilet and sit him there until he goes. Check.

Mission NOT accomplished. About 60% of the time, he'll go between 4:00 & 5:30. Right when I'm making dinner and can't watch him like a hawk. I try, but little luck. What about the other 40% of the time? 2:30 p.m. one day. 11:00 a.m. another. 3:15 p.m. (while on the bus) THEN again at 7:30 p.m. 4:00 p.m. Pattern? Hmm.

But wait, it gets better. Add to this his panic over sitting on the toilet with or without the potty seat. Yep, even on the days I did catch him about to go, he'd scream when I'd approach him and resist & pull my hair on the way to the bathroom. Force him to sit? All you parents out there: remember the "banana" position your kid would go into when he/she didn't want to sit in their car seat? Yep - that was T. Needless to say, we haven't pooped in the toilet yet. And the stress over all this was making him averse to even going into the bathroom at all! No, no - we can't regress, please.

I asked our Occupational Therapist. Nothing helpful beyond what I already had been trying. I called our children's therapy clinic to see if ANYONE had any help to offer, any different ideas. Nope. Is there anyone who knows how to potty train autistic children?

Books. Okay. Still pretty basic. Websites & blogs...ah, there are some interesting ideas (have your child sit on the toilet with a full diaper then cut their diaper open so the poop falls in - interesting, but with a writhing child? Maybe not.)

THEN...our Verbal Behavior consultant came for her weekly visit. She asks, in passing at the end of a session, how my week has been. I sigh, try to keep a good face on, but she sees through it. I'm at my wit's end and am in despair. We try to take T to the bathroom, and she sees what no one else has - and no one else seems to believe - that he now freaks out about going to the bathroom. Then she suggests what will be a miracle: how about putting something in the bathroom that he absolutely cannot resist? How about giving it to him ONLY when he's sitting on the toilet?

Out comes the portable DVD player. Out comes a Baby Einstein DVD. And in a few minutes, T is not only in the bathroom but happily sitting on the toilet. "I have families who have set up an entire entertainment system in their bathrooms for just this reason," she says with a smile.

So here's the plan: several times a day, T gets to watch a few minutes of Baby Einstein while he sits. We slowly increase the amount of time so he's completely comfortable. We try to find a pattern again, a usual time of day, and try again. She said that one kid took a year to finally poop in the toilet, but he did, and so will T - eventually.

Relieved sigh. So now I have a plan. T will happily go to the bathroom and tinkle and sit on the toilet. Now I just have to be patient and positive. It will happen. I look forward to the day we don't have to be washing poopy underpants anymore. It's been 5 years and 3 months. I'm ready. Now I just need to wait for him to be ready! Any time, T, any time.

Saturday, November 04, 2006


Trick or treat! Here is T in his ghost costume. He really got a kick out of seeing himself in the mirror! He was even able to carry his own plastic pumpkin from house to house this year to collect his candy and say "trick or treat."
This year, he is more aware of social practices (such as going to a house, ringing the doorbell, and going inside when someone answers the door) which was a blessing and a curse while we went trick or treating. Walking up to the door - good. Ringing doorbell - good. Even saying "Trick or treat" when prompted - good! Very exciting. don't go inside when trick or treating. Uh oh. I mean, this is definately outside the normal practice - of course it would be confusing. So for almost every house we visited, he tried to go inside. So, between the costume which was a little too long, going outside after dark (which we almost never do), and being told that no, you don't go inside - well, after about 10 houses, he was done. Too overwhelming and confusing. A few shrieks gave us the very clear message! But we were so impressed with our little guy regardless- he was able to say "trick or treat" this year which was unthinkable a year ago.
Maybe we'll try again next year - or go trick-or-treating at our local mall. Hmm. Something just seems wrong about that!