Sunday, April 13, 2008

update...joy....wheaties...b12 shots

I got an email from Autism Speaks...all excited about the new "puzzle piece pretzel" they are selling in stores now. What struck me immediately as odd, it that it is not gluten free. And you can make a pretzel gluten free. This is to raise money and awareness for autism. I think what it does is completely confuse the GFCF issue. Autism Speaks even has a 100 day kit, a kit that it designed to help parents the first 100 days after the diagnoses and it talks about the GFCF diet. But their new pretzel is not gluten free. WTF?

I get gluten free pretzels for A.J. at Mother Earth. They taste exactly like real pretzels. Anyway, I think it is just stupid to make a food that is supposed to benefit autism, but a kid with autism shouldn't eat it. Whoever thought that one up must have eaten their Wheaties for breakfast and probably shouldn't have...perhaps having a foggy day??

So I have talked to two new mom's this week. Just two. One I talked to at a bake sale for Owen's preschool and she told me that her daughter was diagnosed two days ago as being on the spectrum. Then today I popped in on my parents old next door neighbor and she told me their two year old is on the spectrum. Two moms...one week, both with autism stories directly relating to their immediate family. Does everyone's kids have autism now...or is it just that all the really smart kids, who also got their shots, have autism now? I need to set up a, "What I wish I would have done right after the diagnoses, post" because they both wanted more advice than I had time to give.


I just want to do a quick catch up with the methyl b12 shots. Much to my excitement, A.J. is definitely a responder. We have no fog these days. If I forget to give her the shot, she goes back in a fog. If I remember, (which now I always do) we have lots of words, conversation and happiness for A.J. and for me. The downer is she wakes up now when I give her the shots and she screams. Then she says it was only a little owie but she is pissed at me anyway. It is partly a control thing, and partly a, "I don't want to be stuck in the but with a needle, thing." I put numbing cream on her skin first and wait 20 minutes, but it doesn't seem to help much. It doesn't seem to numb my fingers at all.

So hopefully I guess she/we will just get used to the shots but it sucks that something that helps her, is also traumatic for her, and for me to do. But when she asked me if it was going to hurt I said, "yes, a little." So when I cut her fingernails later and she asked me if it was going to hurt and I said, "no." She trusted me to cut her fingernails.

She still gets lethargic in the afternoon sometimes and the taurine seems to help a bit with that, as do afternoon snacks and a short rest in her bed with a pacifier. Yes I did write pacifier, and if she wants one her whole life, that is fine with me. She only has it at home in bed and it helps her to self-regulate. She doesn't have tantrums, she calms her self by lying in bed for a few minutes, then gets up, puts her "paci" on her pillow and runs off to play. Her pacifier is no longer a baby calming device, it is a tool that helps my daughter to self-regulate. Everyone tries to give me advice on how to get rid of it, but I'm not going to. I don't care if society frowns upon it and no would have known anyway if I didn't write it in this post.

I am so excited about A.J.'s improvements and I need to share the the road to this improvement with the world. I wish I would have done all of this stuff when she was 2 and maybe she would not have regressed so much. Finally we are moving forwards instead of backwards and I see glimpses of a life for her that I imagined before the autism got bad and I suddenly was "redirected to Hollond" (see the poem.)

It is strange to be given something back that at times I was convicned, had been taken away from us. Now I think, yeah, she probably will get married and have kids and a job. Maybe, maybe. It doesn't seem impossible anymore, which is kind of weird. I am nervous to let myself get comfortable with that because I got comfortable with that when she was born and it was taken away from us. But here it is, creeping back in. "Normalcy."
I have never craved normalcy before. I always thought normal was boring. But if normal means freedom, self-sufficiency and happiness, than I want some of that for A.J.

Mabye this will all get taken away next week. But for now, I will watch her and let myself be filled with joy, just a little bit.

me.

1 comment:

Laura said...

The pretzels - indeed, WTF?

B-12 shots - Glad AJ is a responder! I give Hutton the shots at night, when he's asleep, though sometimes he wakes up enough to say, "Can Mommy be done?" and try to pull his pants up. Sigh. As long as they have a positive impact, though, I'll continue them!

I see so many people with autism around now. It's one of those, "Did I just not notice them before Hutton's diagnosis, or are they just showing me what 1 in 150 looks like in real life?"

The "maybe" -- That's fabulous! I'm only there sometimes with Hutton. We're still very up and down. The up days are great, and I see a very positive future for him. The down days are just down all around! Unfortunately, this has been a mostly down week, but I think the YEAST-BEAST is at play. We'll find out at the dr. appt. next week.