Friday, April 5, 2013

April is Autism Awareness Month

Autism Awareness -- April is Autism Awareness Month, with April 2nd's being World Autism Awareness Day.  I think it's wonderful.  I wore blue for Light It Up Blue, and, as the coordinator of the Autism Spectrum Support Group of Southern Maryland, I post daily during April to help spread the word.  I'll also be staffing an information table on April 13th at a local Autism Awareness Day event.  (See the calendar on the Support Group's home page for details).  Having said that, I need to say that I'm about "awared" out.  There is not a piece of our lives left unaffected by Asperger's -- that's why it's called pervasive.  I also need to say that I really want Autism Education and Autism Understanding and Autism Acceptance.  I want my child to be understood as a person with gifts and quirks, and for those gifts and quirks to be valued.  

After writing the above, what did I find on Facebook today but this, the ultimate in Autism Acceptance:

Executive Functioning -- Several organizations have pooled their resources and are hosting a workshop on executive functioning on May 11th.  (Details are on the calendar of the Autism Spectrum Support Group of Southern Maryland.)  The presenters are the authors of Late, Lost, and Unprepared.  Before, when they presented here two years ago, I thought that I had a pretty good handle on EF and its impact on my son.  Truth is, I did.  However, what I came to realize as they talked was just how much they were describing my daughter.  That led us to Children's National Medical Center's Executive Functioning Clinic and the unmasking of her ADHD and EF issues.

I'd like to say that we've addressed those issues.  Sadly, last night I watched my daughter struggle with an assignment that needed her to toggle between the directions sheet, the answer sheet, and multiple web pages.  She couldn't do it -- the toggling, not the work.  It was just too much for her executive functioning-wise.  So she got upset and quit.  So much for a 504 Plan.  So much for differentiated instruction.  So much for her class grade.  So much for her self-esteem.  Do you think I could put it in her 504 that all her teachers are to attend the May 11th workshop?

13 Years in the System -- My son's 3-year re-evaluation is happening now.  I have all the evaluation reports and teacher comments.  All but two teachers see issues with organization and social skills, yet his evaluations don't support it.  I'm scared that the school team is going to recommend dropping him.  See, it's not that I want him to need supports; it's that I see that he needs them, and I don't want him to lose them.  I want him to learn to be independent, but he doesn't learn such things by failing.  That's not how his brain works.  He needs to be explicitly taught these skills and then supported until he's mastered them.

So why do I care if what I've said is that I want Autism Acceptance?  Why not leave him alone and let him be a walking poster of Asperger's?  I care because as a society, we aren't at acceptance yet.  He is still going to have to get and keep a job, get and keep friends, get and keep a family to the degrees that fulfill him.  And he absolutely does not identify with the Aspie community.

Fatigue -- When I started this post earlier today, I brainstormed a bit.  I fleshed out the above.  What's left is, "So tired."  Even as I'm jazzed about Autism Awareness and the great EF workshop next month, I'm just so tired.  And doesn't that really sum up the truth about special needs?

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