Comment: I'm on-board...by myself

Posted Friday, January 23, 2009 - 13:39 by Anonymous

Winter stinks. I'm serious. I've had it up to here, literally, with the snow. And I can't stand the cold. The older I get, the harder it is for me to just breathe outside in sub-zero temperatures. The Norman Rockwell imagery is only enticing up to and including Christmas. After that, those images get old. As winter goes on, they become a source of contempt and scorn. My sister lives in California and she laughs and laughs when she says, "Gee, it sure is cold here. It got down to fifty degrees overnight!"

Strangely enough, the cold weather seems to affect the kids not at all. Last week, the kids had an unexpected five-day weekend. School was cancelled Thursday, Friday and Martin Luther King Jr. Day was Monday. A nice little mini-break during which we had NOTHING to do because we couldn't leave the house. Actually, the car did start on Thursday so I took the kids to Target. We wandered aimlessly before picking up Jonathan's blood pressure medications and then one of the wisest, most useful purchases I've ever made: a heated mattress pad. It's wonderful. It's like slipping into a hot tub in bed at night. I can't stand sheets made from anything other than at least 250 thread-count cotton, so flannel sheets are out. I need smooth, but the cotton ones get so cold. Ha - not anymore. Thanks for the gift card, Aunt Sally! We used it well.

Speaking of beds, Thomas is still playing musical beds at night. He is getting better, though. He will come in every other night or so. This morning, he did wait until after Jonathan got up for work to come into our bed. That's our little rule; they can't come in until Daddy gets up for work. Hayley disregards this rule entirely. She usually comes in around 1 a.m. (I think...) but she's such a good snuggler. If I'm still up when she comes in, I send her back to her bed. Lately, since we've been using this heated mattress pad, if I've got mine on (there are separate controls for each side of the bed) and Hayley's snuggled up against me, I wake up soaked with my own, and also some of Hayley's, sweat.

Thomas has been doing really well in school. Last Tuesday when I was in class, the teacher had each of the kids take a dry-erase board and a marker and sit on the floor and practice writing words. This seemed like something we could do at home, so I took a huge dry-erase board from an easel that nobody uses, cut it in half with a jigsaw, and now Thomas and I spend a few minutes every day writing what his teacher calls "popcorn" words; words that come up in conversation a lot. Words like can, today, we, him, she, it, etc. I also pick a really simple book from our shelf and try to get him to sound out words with me. Most of the time he is very reluctant and complains and whines about it. The fact is that he simply does not like to read or write. He might like to read if he learned how, but I don't think that writing will ever be his favorite thing to do. Hayley loves to do it mostly because she lives for praise from grown-ups. Thomas gets shy and anxious when Jonathan and I praise him for his efforts. We try to keep that kind of thing to a minimum, just saying, "Good, okay, what's the next word?" If we don't jump up and down and clap our hands and shout, he's okay. Hayley loves the jumping and clapping.

Today Thomas saw the occupational therapist. She came out to talk to me while the kids were getting their coats on. She mentioned how much improved Thomas is at writing his name. When we try to write it at home, Thomas makes such big letters or he starts writing in a spot that doesn't give him enough room to finish his whole name. The OT gave him a very long strip of paper today, so he was able to fit all the letters on it. He sometimes makes the letter "s" backwards, but she told me that they don't get concerned about that until second grade. He also needs to work on his lower-case "h" and "n" since they look very similar. Other than that, she said he's doing really well and she's noticed an improvement. Something I forgot to ask her was if she's noticed Thomas needing a lot more OT since after winter break, which has always been a hard time for him. Nobody has said anything and the extra OT minutes are built into his schedule this time of year, so if he needs it, he's getting it.

So far, we haven't noticed any side-effects from the Strattera. I don't know if it's really doing anything for him, but that's what we said about the Focalin until we took him off of it. It had been making a tremendous difference...along with a disconcerting facial tic. Jonathan works with a woman whose boyfriend's son is autistic with symptoms of ADHD. She said that this young man had developed an extremely pronounced facial tic while taking Ritalin or Focalin or something...one of the stimulants, anyway. She said that he was switched to Strattera too and hasn't had any tic problems and the medication seems to work for him. Thomas has been taking it for just over two weeks. The doctor said it needs to ramp up in his system for about four weeks before we might notice a difference, so I'm counting the days. I'm also supposed to call her around February 7 to let her know how things are going. She may decide to raise the dose from 10 mg to 18 mg. The lower dose of Focalin didn't produce a facial tic, but the higher one did. We'll see. At least we don't get bored, having to constantly observe our child for signs of one of the millions of side-effects of these meds.

I had the chance to speak to an old college friend of mine that I got in touch with on Facebook earlier this month. It just so happens that his own son was diagnosed with autism as well. He and his wife are 100% sure it was the 18 month MMR shot because he had been doing fine; meeting milestones and developing normally until he had that shot. He lost all of his words over the course of the week following the shot and was a completely different kid one week after the shot. I know that there are a lot of people out there who have dismissed vaccines as a cause of autism (mostly doctors and drug companies, no?), but it's stories like this one from my friend that really make me wonder.

I'm starting to think that autism is not caused by one thing only. I think that vaccines could cause it, but I don't think that Thomas' autism was caused by a shot. He never "lost" words; he just never had any words to lose until he started speech therapy. I really wonder a lot about the flu shot I had in my third trimester with Thomas; my doctor told me to get one, so I did. I wonder if something funky happened with that. The other possibility is that Jonathan was working on a job site during the time Thomas was conceived and while I was pregnant. This site was known to have heavy metals in the soil and Jonathan had to have blood tests before he started working there and after he finished the job to make sure he wasn't poisoned. I don't know if that kind of thing can get into sperm; it would seem that if it did, the sperm would be incapacitated and therefore unable to do its genetic job. Who knows? I'm not a doctor. But I do wonder if Jonathan went to work, put his dirty (heavy metals-laden) jeans and socks in the laundry basket, and then I handled those clothes, shaking them out occasionally and probably releasing all kinds of toxins in the air that I must have inhaled. It's my best guess at this point.

My friend with the autistic son pretty much considers his boy "recovered" due to their strict gluten and casein-free (GFCF) diet. I've really been wondering if we should try it. Of course, this is no time to be spending hundreds more per month on groceries, but I do wonder if Thomas would benefit from it. Jonathan does not want to do it, but purely for selfish reasons, I think. If one person in the house is GFCF, the whole family has to be. I must admit, it would be hard for us; I myself am a bread and pasta junkie, but if Thomas could "recover," my God - how could we not do it? I'm going to check out my buddy's wife's website, gfcfdoneeasy.com, and see if it really can be done easily. For as hard as it would be on Jonathan and I (I don't think Hayley would care much; she never eats that much anyway), it would hands-down be hardest on Thomas. I'll have to think about it a lot more, but I'm really beginning to think we should try it. If it doesn't work, it doesn't work and we can go back to our usual eating habits. But what if it does work? I've heard different statistics about it, saying that anywhere from 60% to 80% of autistic or special-needs kids benefit in some way from a GFCF diet.

The problem is, we all have to be on-board. Right now, I'm on this little board all by myself.

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