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Monday, December 6, 2010

Post Colorado Update

"We can get him back" is what Dr. Pratt said to me (see previous post).  I am pleased to report, and also worried to jinx things and get my hopes up in writing this, that Finbar is doing much better since his second BIT session in Colorado.  There are certain somethings, certain moments, looks, words, thoughts emanating from him in the aftermath that provide a glimpse at what may be changing in his brain for the better.  He still bounces around almost incessantly and stims on spinning things (I am almost convinced at this point that there is absolutely no therapy or medicine that can change this) - BUT, there is a certain flexibility, relaxed demeanor and tone, longer periods of physical and psychological calm, and willingness to compromise and admit wrongdoing that is ever so subtly creeping into Finbar's repertoire of behaviors.  In the moment, when I am accusing him of committing a crime or insisting that he do things my way, and he quietly accepts in a soft tone with "Ok mom", in that moment I know that something has shifted in his processing of the world. That some new way of thinking is emerging. That perhaps he is able to take in more and deal with it instead of running away - HE CAN COPE.  I am also seeing more honest, more present, more REAL feelings and self awareness being expressed by him.  It is almost as if he is finally straightening up his spine, as strange as that sounds. It is like "OK, here I am, here is how I feel, just want you to know."   A few days ago, I heard him say to a behaviorist who was facilitating a playdate, "OK, let's stop talking about how we FEEL about coloring this (cardboard) playhouse and let's just color."    These things are markedly different in my day to day interactions with him. Still, he harbors much anger and blame, especially toward me, that rears its ugly head. He is still socially awkward at best. And he continues to get lost in repetitive loops and have uncontrollable outbursts, although much less frequently than 2 months ago.  But the difference is that when he exhibits these poor behaviors, his reaction to MY reaction is more regulated, accepting and within the norm.  So I am very hopeful. Hopeful that his increasing ability to cope and process emotion will lead to new behaviors and a positive learning curve and knock on effect. You will know that it is working if and when I board a plane to Boulder to get BIT training in the future - to be continued....

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. 

Daily fringe

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.

The IEP meeting

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.

The biggest plus of all this testing, was a confirmation expressed in several test scores, of what I and everyone who encounters Finbar already knows. The child is off-the-charts intelligent.  Sure, he is still learning to read by sounding out words and learning sight words like the rest of them in Kindy, and it is not as if he is a math savant at age 5. However, apparently his "general base of knowledge" and his ability to conceptualise things, along with his vocab, are way up there.  His mind thinks like that of a 16 year old, possibly older, but the test only went up to that age.  He nailed all the riddles the psychologist gave him, often providing her with the answers before she finished giving the riddle.   What this means, the psych told me and the teachers, was that some of the behavior we see may not always be due to autism, but in fact, due to giftedness that is not being properly engaged in class or elsewhere.  He just simply is on another planet (her words) in his mind.  The wheels are always spinning, ideas always churning, insatiable curiousity searching and mind cataloguing and documenting.  There are no true programs or accomodations for really smart kids in Santa Barbara public schools, and it would not appear that there is much to offer in private schools here either.  There is a gifted and talented program in upper grades, but with the current state of budget cuts, it is likely to not even be around by the time Finbar reaches the age. We will have to keep a close eye on how this affects his ability to learn and engage in a public school classroom. He needs to be in a math and science magnet school but there isn't one.  To be continued...


Rebecca Royce said...

Jen--WOW! You have had a lot going on the last few weeks. Did you realize you were doing so much when you were doing it?? Also, it comes as no surprise to the rest of the family either that he is so smart. I took a class in college called 'Teaching the Gifted.' Its an amazing field. Always thinking of you!

finbarsmom said...

Ha - yes! And here I sit still not fully having read the reports and IEP :0 Too tired after yoga...thanks for reading xoxo