Autism Watch: 2007

Regression?

Posted on: April 8, 2009

No clever title for this one, just a one word question from a worried mom.

These last few weeks, BB’s been ‘off.’ No one thing seems to be the cause. No changes in diet, no new meds, supplements, treatments. No new activities. Something’s just off.

Today, I’ll wonder every time the phone rings. Will it be the school? If it yes, will he be sick, or will he be having a meltdown? Will I have to pick him up?

I am thankful for a few things despite what appears to be one of those downs on the rollercoaster of autism. I am thankful for a good school nurse who works with our son, and with us. She comes up with good ideas to help him stay the whole day of school, and to make that day easier for him. I’m thankful ds can tell us what’s going on in his day, though speech doesn’t equal communication so I really wonder what we’re missing as he interprets things differently and is so literal, he may miss the big picture. I am thankful for a good school admin to help us make some changes for the upcoming year. It’s clear now he needs more social skills help, and we can’t risk starting a new school year without it. I am also thankful we live so close to the school and that my job/employer/supervisor allows me the flexibility I need to take their phonecalls and run over there as needed. And, I am thankful for Clairol, a haircolor I can do at home on my own schedule at a price that won’t make me compare it to how many doctor appointment co-pays or expensive child’s slip-ons I could buy with that money.  (Gotta be thankful for the little things, and be willing to laugh at where your mind can go sometimes, too.)

Every day, getting BB out the door to school is a battle. It’s not that he’s entirely uncooperative. It’s not that he’s refusing to walk away from the TV or computer like he used to. It’s that he’s so stressed about school it appears to be causing anxiety that’s manifesting in tummy aches and other physical issues. It’s hard to explain, but you autism parents will get it: he will get so upset about something, to him, he feels like a tummy ache but it may be tension. Or, it may outright be a tummy ache because he’s so upset about something that it really is making him sick.

When I left him at school yesterday morning, I again left him at the picnic table. Alone. I hate it. I’m so tired of leaving my sweet, funny little guy alone in a sea of children. They walk past him and he tries to play but they run off. Or he calls to one of them and the child(ren) ignore him. He’ll get a couple “hi” or “hello”-s when hanging up his backpack, but if my son responds (obviously, an issue we need to deal with) they still aren’t the ones wanting to play with him. I’m glad for those kids but I want him to have someone that says “Yay, xx is here! Let’s play!” Don’t we all want that when we go to work or anywhere on a regular basis? I tried a different tack and told him that those kids that didn’t want to play with him were missing out. “You’re a fun kid!” “Mom, only to adults am I fun.” What do you say to that?? He’s right, adults love him, but adults aren’t in second grade.

As I sat with him at the table, he told me he was tired of getting picked on. My hair stood on end. Picked on? Was it finally happening? I’d worried about this for a long time, someone teasing him for something he can’t control. Kids tease, and I expect this, and he’ll have to learn, but to tease him for a physical thing — a tic, a stim — just shouldn’t happen in second grade, yet it is. And by a surprising child, one who earlier in the year seemed to be an ally who understood him. So much for that. Apparently she sees him make a face, mimics it, and they laugh. He went on to tell me how he’s tired of other kids not including him, and this one girl talking about him. (“But, she made a mistake she doesn’t know about. She tells xx and he tells me what she says!”) It’s time for a change. I can no longer leave him unhappy, wondering, hoping that his day gets better and that he doesn’t stress himself into a tummy ache.

On Monday, the phone rang from school. He’d hit his head on the table but we’d told him to make the whole day at school without a nurse visit, and he of course took it so literally, he thought he’d be in trouble. Poor little guy, of course you go if you’ve got a boo-boo. Tuesday, the phone rang. Twice to the office for a tummy ache. Once he talked about it, he went back to class. I already have a mail from the school about excessive absences, but what do you do? How do I fix this? If he’s sick, he needs to come home. If something there is making him sick, they need to resolve it. So now we work together to find out why, and hope the rest of the year goes quickly.

And on other fronts — his appetite has increased so he’s eating bigger, fuller meals. He’s easily upset by things, and you just never know where a conversation will go. Will he blow up? Yell at me? Not want to talk to me for half an hour (or more) because I asked him to stop picking at the dry skin from his lip licking? At therapy last night, he had to be pried off me, and then wouldn’t come out from under the table. He refused to cooperate and had what was probably his worst night there in 15 months. Yet, when we got home, after the bath that I practically had to hogtie him to take (he goes into this non-listening mode where he completely ignores us and it’s really convincing), he pulled out “Diary of a Wimpy Kid: Rodrick Rules” and read out loud for a while. And read good! What an ability to sound out words he doesn’t know, which aren’t many, and to hear him laugh at a book….ahhh, not much better than hearing your child spontaneously laugh.

So things aren’t all bad, but what’s causing the regression? The stress from school? Just going through a phase? We see the neuro next week to have the MRI and bloodwork discussed. I want to talk about the anxiety then, too, see if he has any ideas. We’ll work with the school, and continue to talk to ds. It’s so difficult when things seem to be in one of ‘those’ phases.

If you haven’t seen it already, try to find a transcript or clip from Larry King Live on Friday night, with Jenny McCarthy, Jim Carrey, and Dr. Jerry Kartzinel. Oh, and Dr. Bernardine  Healy, the voice of reason who understands that we parents need to be heard, that biomedical treatments shouldn’t be ignored, and that vaccines may be one of several toxins in our world that are contributing to this huge increase in the number of children with autism spectrum disorder. Leave your opinions or biases behind as you watch, and listen to the numbers. It makes sense.

Gotta run. He just woke up and I need to go give him a cuddle snuggle…something about his eye hurting….

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1 Response to "Regression?"

Lip licking…oh my. One of the cyclic tics we have to worry about as well. You are fortunate that the school will tell you what’s going on. Mostly what we hear about are the blowups after things have gone on for so long that they are crisis. Maybe Junior High is just different. Best wishes.

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