Wednesday, March 26, 2008

others on the path

Am reading William Christopher's book "Mixed Blessings" right now...that's Father Mulcahy to you. Am also reading Robert Rummel- Hudson's book "Schuyler's Monster". The reason for two books is simple...bathroom reading and living room reading! Duh! :o) (Am also reading a book about the Kindertransport, which is heartbreaking and can only be done in shifts, and doesn't apply to today's post...but, a great book nonetheless!)... It's always fun to read about a topic that totally has my interest. Hudson's daughter is non-verbal, like Mas, so that definitely piques my interest. Christopher's son is apparently somewhere along the autistic spectrum, so that is also interesting. It breaks my heart to read things that are similar to what we've gone through. Makes me wonder if I should have been writing a book all along. We caught a short glimpse lastnight of "Autism: The Musical." Don't have enough of it watched yet to offer up any opinions. It is interesting to watch the clearly labeled autistic kids and say, "Yup, that looks familiar," and "Nope, that doesn't look familiar." The last discussion with our geneticist in Omaha was him telling us to be sure not to let anyone call Mason autistic, since he may have autistic tendencies but there is definitely something else going on there. I will always remember how earnestly he made me promise to make sure that didn't happen. I remember Riley having way more autistic features growing up than Mason did at the same time: As a baby, you could pick Riley up and talk to her and she would turn her face away from you, also, she didn't begin to speak until she was 2 years, 3 months old. I also have many pictures of her "setting up" her toys, cars, animals, etc., in perfect little arcs and not wanting them disturbed. She also used to "wiggle" with her stuffed animals and not want us to watch her, which was clearly self-stimulating behavior, but I had never witnessed it before so was unsure what was going on. Of course, Mas has his share of strange behaviors, too, but was definitely more social as a baby/toddler than Riley was. It makes me wonder if Riley had tendencies that way, too, and how she dropped them, or what we did to help her get past that. Of course, Mas has clearly obvious brain damage on MRI, (which doesn't correspond to the label of autism), and also has had highly elevated lactic acid levels and an incredibly high lactate/pyruvate ratio, as well as many tiny things wrong with most of his bodily systems. So, some obvious causes to his delays. All this reading makes me yearn for a "group" to belong to where I could compare notes with someone and have someone to bounce ideas off of...as it is, the parents of undiagnosed children don't really have a nice tidy box to live in and socialize within...we just have lots of wishes for a diagnosis so we can move on. But, reading about others on the path sure makes the journey seem somewhat lighter. I'll let you know what I think about all of this reading once it's done.

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