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Old 04-20-2012, 10:17 AM   #868
Clodfobble
UNDER CONDITIONAL MITIGATION
 
Join Date: Mar 2004
Location: Austin, TX
Posts: 20,012
Yeah, it's one of the really frustrating things, when you hear people talk about how severe autism is "just another way of seeing the world," or a gift that should be celebrated... people usually only say this when they have no experience with how incredibly, incredibly difficult autistic behaviors can be.

Nobody ever says schizophrenia is just another way of seeing the world. Yet many autistic people can physically injure others just as well as a schizophrenic can. Plus they may shit their pants while they're doing it.

Sorry, got a little maudlin there for a moment. It's been at the forefront of my mind recently because it's ARD/IEP season, which is to say, the meetings at the end of the school year to talk about each special ed student's progress and goals for the next year. This is the time when parents in denial have the school throw the facts in their face, and parents who aren't in denial get told that, sorry, the school doesn't have any money to help them anyway.

The little boy I babysit after therapy has made zero progress in the last year, has actually gone backwards in my personal opinion, but his mother was, apparently, unprepared to hear this from the school professionals. They "broke the news" that they didn't see him in any sort of inclusion scenario for Kindergarten, that he clearly belonged in a full-time special ed classroom, which is obvious to anyone who spends 2 minutes with him. But apparently she thought that wiping poop on his face and being mostly non-communicative is close to normal for a 4-year-old. Then she sadly admitted to me that she does think maybe she's seen Minifobette surpass her son in skills this last year (Oh? You think? My daughter who has normal conversations and real friends and hasn't had diarrhea in over a year?) And when she pushed me hard for details about our ARD, I had to admit that, yes, they have every expectation that Minifobette will be fully mainstreamed with no aide.... and then she changed the subject and excitedly told me about this "really fantastic" new TV show called "Touch" which presents the main character's autism as a genuinely supernatural power and implies that he is here to carry out a spiritual mission. Right... let me know when the TV show glorifying schizoprenia comes on.




ANYWAY. Yes, Minifobette's kicking it. Far better than her brother was at this age. Unrelated, but still adorable, her hair suddenly decided to turn curly, and over the last 6 months has gone from stick-straight to giant ringlets. This is also the child who was born with dark red hair that later turned blonde, so we have no clue what's going on with her follicles. She's been able to taper off some of her meds, but some remain persistently necessary, like the high doses of vitamin K, B vitamins, and magnesium. She's still on Pentasa and Oxytocin. She also has struggled with strep a few times, and we're dreading the possibility that the Zithromax will stop working, like it did with her brother, and she'll eventually have to have her tonsils out. But that's for the future.

Minifob is back to a good middle ground after a rough winter. The low dose immune suppressor enabled him to get off the steroids without regressing, which was the goal, and now the goal is to hopefully get him off the immune suppressor. It became clear that while the supplemental formula he was on was great for his digestion, the artifical sugars were affecting him neurologically, and given the choice I would clearly rather have his brain and work on his gut instead of the other way around. So we cut out the formula cold turkey and tightened down his diet to the same strictness as his sister. This caused significant digestive upset for a few weeks, but we got back to baseline and then beyond, so it does appear that it was the right choice, a necessary two steps back in order to take three steps forward. Overall this means the delta change from the beginning of the school year isn't terribly impressive from a behavior and speech standpoint, but he has at least been steadily gaining in academics the whole time.

The school ran a full barrage of third-party evaluations on him to see how things stand (they were required by a complicated mandate to do so, otherwise they wouldn't bother,) and the results were interesting. In math, he has trouble with low-level arithmetic but is way above grade level on abstract concepts like time, measurement, spatial relations. Reading and comprehension are above grade level as well, except he has absolutely no understanding of passive voice. As far as he's concerned, "The baby was kissed by Grandma" is equal to "The baby kissed Grandma," and he thinks we're all insane trying to explain the difference to him. He still struggles with speech because, as the evaluator wrote, "the oral motor faculties aren't able to perform at the speed at which his thought processes are moving."

Long story short, Minifob's disease still requires constant maintenance at this point, but we're getting there. Minifobette is a little better off, moving forward at a more rapid and steady pace. They're both expected to be scoped again in roughly May of 2013, two years after the first scope, to examine progress. So hopefully by then I can post some pretty pictures of their lesion-free, pink, round, healthy small intestines.
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