Monday, December 6, 2010
More on "G"
Well there has been no talk of marrying "G" of late, however there has been talk of sleeping with her :0 "G" came over for a playdate recently. The two had so much fun that Finbar insisted that she not leave and instead "sleep in my bed with me tonite." It is this very preciseness of speech and lack of social filters that results in many amusing moments with Finbar. There is no "do you wanna stay for a sleepover?". Rather, it is "I want you to stay and sleep in my bed with me tonite. You HAVE to, PULEEZ." The irony of this statement is that "G"'s father is Sicilian. If this were another year and place, who knows what might happen if he got wind of my son's proposal to his daughter.
So of course I say "no" and politely escort "G"s mom and "G" to the door, Finbar all the while perseverating on having her sleep in his bed. I am later told by my husband that unbeknownst to me, Finbar solicited his Dad for assistance in sneaking over to "G"s house to sleep in HER bed with HER, following up this plea with "shh, don't tell mom. You HAVE to help me Dad. You HAVE to." And he had a plan for how he and his Dad could do so.
The other day, in the middle of the day, I was pounding and breading a bunch of fish and chicken breasts with gluten free breadcrumbs to vacuum freeze, and I reflected on all the things I did that day and on most days that were what I call "fringe activities". Fringe activities are things that I do or don't do that are a direct result of my son's autism. That day, I had run over to a grocery way across town in search of raw milk and non dairy rice cheese - two VERY hard to find and very expensive items. Here I was pounding meat because of Finbar's motor/chewing sensitivities and breading and freezing it because gluten free versions are hard to find and expensive (Finbar's entire gluten/dairy/soy free wholly organic diet is expensive and I estimate costs our family TWICE as much as a typical one). Also that day, I had our third appointment with a Marriage and Family Therapist that I requested to evaluate Finbar and help me decipher and deal with his anger and emotional issues. Finally, I thought of the many kids and moms from school that were at the park across the street that day while I was at home concocting in the kitchen, and the fact that on that particular day, as great a social opportunity it would be for me and Finbar to join them, it was a much greater social risk to do so. And so as I went in and out of the house putting groceries away and putting up Xmas decorations outside in plain view of these moms and kids, I, in effect, may have appeared to be, yet again, anti-social. Ugh.
Phew and ugh. A week ago was Finbar's IEP meeting and triennial review for his diagnosis of autism. I was presented with a slew of test results and information that I have STILL not had time to read over and digest. I am procrastinating on signing off on this IEP. Speech services were cut, with a rationale that I am not sure I wholeheartedly agree with. And that was AFTER I negotiated. Apparently because his vocabularly is off the charts, that means he doesn't need a speech therapist. What about COMMUNICATING?, I ask. You know, having a two way conversation, maintaining an appropriate tone of voice, choosing the right words to communicate thoughts....BUDGET CUTS. BANKRUPT CALIFORNIA. This is the result I thought. CUT CUT CUT. So we compromised on speech services, but I am still not sure I am going to accept it. The most conflicting issue for me coming out of this IEP is the idea of first grade being a longer school day than Kindergarten; however in first grade Finbar will have a classroom aide the same amount of hours he has now. This means that he would have support person in class a smaller percentage of his total day in first grade (and of course, the school district would not have to increase costs by paying someone to stay longer - CUT CUT CUT). The rationale presented "we don't want to create uneccessary dependence on an individual". To me that describes the art of being a GOOD classroom aide, not a rationale for cutting back on an aide. To be continued...
His autism diagnosis
During this year's IEP, Finbar's diagnosis of autism was reassessed. The ironic thing about having a child with high functioing autism is that you WANT them to get the diagnosis in order to get the school and support services, even if you REALLY WANT and can realistically hope that your child not to need the services. For an autism diagnosis, the child needs to be deficient in three areas: speech/communication, social and behavioral. And there are specific deficiencies in each of these categories that must be met. The jury of testers SAID that Finbar almost was disqualified for autism because of his excellent speech skills - I beg to differ however. He definitely has speech issues among others. What I realised in this IEP is that if I, THE MOM, had not been brutally honest with myself and the testers on the evaluations and questionaires they had me fill out about behaviors at home and in public places, then Finbar very well might not have received his diagnosis this time around. Time after time, the school staff rated him higher and better on most fronts (a relief) than his own mother did. But I know him best. And I know that my son has autism and struggles a lot, and the sad, on-the-fringe irony is that I have to advocate for his diagnosis. Whatever it takes.