For the last few mornings, I've given T gluten free waffles for breakfast - and held my breath. This is our first real move away from Specific Carbohydrate Diet. We are also, as stated in a previous post, continuing the Methyl B-12 injections every three days.
Results so far: he is happier than he's been all year. More real interactions, wanting to play, understanding and maneuvering situations better...it's all very exciting. Now for the poop talk: it is as normal as I've seen it in months. Gross to talk about, I know, but this is one tangible way to measure progress for him. At least I'm not inserting pictures.
I think we're on the right track! Welcome back, rice. Next is cheese, potato, then...GLUTEN. Fingers crossed.
Sunday, December 16, 2007
Friday, December 14, 2007
Holiday Train exhibit
Today we went to our local zoo to see the big display of model trains. What a great time! And it was no surprise at all to spot at least one other autistic boy there. Something about trains and these kiddos really connects. I took him today because Fridays are half days at the Center (VB school), and I hoped that since most other kids would be in school, there wouldn't be a big crowd. I was right – it was perfect! Just a few other kids & T had the big space to themselves, and T was able to jump and flap his hands and make very happy noises as much as he wanted – especially since another boy was there doing the same thing. He especially liked the trains that moved quickly and were on tracks close by.
What pleased me so much was that although we did stay in certain areas for long, long periods of time, he did eventually move around the whole space, even upstairs, and got to see the whole exhibit. He got distracted for a few minutes by the enormous fans (this display was set up in a huge greenhouse), but I was able eventually to move him away from them without a scream or a lying-down fit.
This was a very successful venture out into the world today. I feel so very blessed that we have a kid that can maneuver these situations with reasonable success. So many fellow parents don't even try anymore – they just know their boy won't be able to handle the crowds, the change of routine, the noise, the stimulation, etc. Yes, we have had our share of struggles, and even a few disasters, but they have not stopped us from trying. And I figure that if we never take him to these places, he'll never have the opportunity to learn how to handle them.
The grandmother of the other boy & I almost immediately started chatting. She was watching T, and I had spotted her grandson. We smiled at each other, and when I approached, said "I think our boys could stay here ALL DAY." She replied, "Yes, I think you understand. I was watching your boy. Once you have one, you can spot 'em a mile away!" It was so cute, and honest.
Her boy was 8, and I couldn't help looking forward two years and thinking about T being that big. Do they have to grow up? Can't he just stay little and cute? I won't be able to pick him up when he's that big. And God, I hope he's potty trained by then!
Okay, stay in the moment. It was an awesome afternoon. Let's hear it for model trains.
Methyl B-12
Five weeks ago, we started a new biomedical therapy with T: methyl B-12 injections. Yes, INJECTIONS! I now know how to give my son a shot, Rob knows how to hold him, and T is awesome at staying still for them. It is the slimmest, shortest needle I’ve ever seen, and when done correctly (I’ve practiced on myself several times) it really can barely be felt.
This is from the Talk About Curing Autism website:” At the Defeat Autism Now (DAN!) 2004 conference, methyl-B12 was awarded “most recommended medical treatment” for autism spectrum disorders by the attending DAN doctors for the year.”
A refresher: DAN docs look at how kids with autism are bio-chemically different from typical kids. Then they prescribe treatments to treat the differences. Many times, kids are helped by these attempts to normalize their systems. Some – very few – are considered “recovered.”
I won’t go into all the science behind all this except to say these few things to you as I understand it: the methylation process is part of the body’s detoxifying process. The methylation process appears to be interrupted in these kids, as well as the detoxifying process. Methylated B-12 can get right to work - their bodies don’t have to do anything to use it. If you’d like to know more, this is the best article I’ve found to describe it: http://www.talkaboutcuringautism.org/medical/methyl-b12-treatments.htm
Today marks five weeks since we started. I am pleased to report (drum roll, please) that this intervention, along with zinc cream and Verbal Behavior, WORKS for T. Just about everything else we’ve tried in the biomedical/DAN! World has had little or no effect. But this…ahh (happy sigh) seems to be having some positive effects. It’s not a miracle or a cure, but darn it, he is talking more: requests, refusals (especially refusals!) and filling in the blanks. He’s more inquisitive and just seems to be more aware of his surroundings and himself. His OT said (umprompted) that he’s talking more, seeking out more vestibular feedback and is more willing to try something new in the therapy gym. Almost every day surprises us with something. A few days ago, T was in the basement when Rob told him it was time for his shot. T got up, walked up the stairs, walked to the refrigerator (where we keep the pre-filled syringes), opened the door, pointed up to the bag of syringes and said “Shot.” Great Scott! A year ago, the mere task of pointing to the refrigerator was in his Verbal Behavior program for 5 months. (Literally – we introduced it 12/8/06 and it didn’t move into maintenance until May ‘07.)
So we’ll continue this treatment. It’s amazing to write those words, because we were so close to giving up on all of this a few weeks ago. We still plan to reintroduce foods to his diet, because all the dietary stuff just seemed to make things worse for him. Rice came back today. I think it’s fair to say that he’ll have some Christmas cookies this year after all. In with methyl B-12, out with SCD!
This is from the Talk About Curing Autism website:” At the Defeat Autism Now (DAN!) 2004 conference, methyl-B12 was awarded “most recommended medical treatment” for autism spectrum disorders by the attending DAN doctors for the year.”
A refresher: DAN docs look at how kids with autism are bio-chemically different from typical kids. Then they prescribe treatments to treat the differences. Many times, kids are helped by these attempts to normalize their systems. Some – very few – are considered “recovered.”
I won’t go into all the science behind all this except to say these few things to you as I understand it: the methylation process is part of the body’s detoxifying process. The methylation process appears to be interrupted in these kids, as well as the detoxifying process. Methylated B-12 can get right to work - their bodies don’t have to do anything to use it. If you’d like to know more, this is the best article I’ve found to describe it: http://www.talkaboutcuringautism.org/medical/methyl-b12-treatments.htm
Today marks five weeks since we started. I am pleased to report (drum roll, please) that this intervention, along with zinc cream and Verbal Behavior, WORKS for T. Just about everything else we’ve tried in the biomedical/DAN! World has had little or no effect. But this…ahh (happy sigh) seems to be having some positive effects. It’s not a miracle or a cure, but darn it, he is talking more: requests, refusals (especially refusals!) and filling in the blanks. He’s more inquisitive and just seems to be more aware of his surroundings and himself. His OT said (umprompted) that he’s talking more, seeking out more vestibular feedback and is more willing to try something new in the therapy gym. Almost every day surprises us with something. A few days ago, T was in the basement when Rob told him it was time for his shot. T got up, walked up the stairs, walked to the refrigerator (where we keep the pre-filled syringes), opened the door, pointed up to the bag of syringes and said “Shot.” Great Scott! A year ago, the mere task of pointing to the refrigerator was in his Verbal Behavior program for 5 months. (Literally – we introduced it 12/8/06 and it didn’t move into maintenance until May ‘07.)
So we’ll continue this treatment. It’s amazing to write those words, because we were so close to giving up on all of this a few weeks ago. We still plan to reintroduce foods to his diet, because all the dietary stuff just seemed to make things worse for him. Rice came back today. I think it’s fair to say that he’ll have some Christmas cookies this year after all. In with methyl B-12, out with SCD!
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