Monday, May 27, 2013

The State of Autism at Our House

My Son Age -2
I recently attend a parenting seminar for parents of children who have disabilities.  It was called, "Help and Hope."  The speaker talked about optimistic parenting.  The little voice in my head said, "Great another thing I have to do instead of my child.  I have to be happy and positive even when this thing can be so soul sucking at times."  I have a lot of voices in my head. It turns out the speaker spent quite a bit of time on perspective taking and taking care of yourself.   Which if you are parenting someone you love on the spectrum, you need to hear. It is so easy to see the trees instead of the forest.  I want to paint you the big picture of the past year for my son or give some perspective to last year.

This is one of things I question whether or not I should post. Like this could possibly jinx the roll my son has been on.

There is a lot about those in the spectrum in the early years.  But my son wasn't  diagnosed until the beginning of 8th grade.  During those years, the behavior was just classified as extreme ADHD/anxiety and we just handled the behaviors without much support. I find there isn't much out there that talks about the teenage years for those on the autistic spectrum.  This is community that is under represented and according to the statistics is just going to get larger. A few really great parent bloggers exist such as Karen at Confessions of an Asperger's Mom . There is also a great group on Facebook called Aspergers Confessions. I also find the Facebook group/page by Bill Nason, therapist called Autism Discussion Page to be very helpful.

So I want to share the state of Autism at our house- the home of a HFA teenager. I realize the spectrum (autistic) is wide.  This is how it looks for my son.

My son is about 3 weeks from wrapping up his school year.  This year he has spent in a different educational setting. What is so different about it? It is a school that only takes kids with behavior problems. The school is out of my sons district and he takes a 30 minute bus ride to. It is a smaller school which as you can imagine is extremely restrictive. There are less than 40 full time students He is in a classroom of 9- 11 kids with a teacher and two aides.  They are doing a full High School Curriculum without any special academic accommodations. All the students in his class are in 9th and 10th grade. Despite my misgivings, it has been good.  He is thriving.  His social skills have improved.  He is less anxious and less frustrated which has lead to better behavior. He is a very young 9th grader in High School.

What a difference a year makes and the right educational setting. Middle School was rough and that would be understating it.  I want to say, up front, the staff at Middle School were generally outstanding and did everything they could to help my son be successful in this environment. This school year has allowed my son to heal from all the Middle School drama. Drama that was mainly self created. The drama of being suspended and constantly overwhelmed in a large busy school. Did I mention there is puberty too? For me as a parent, it has allowed me to breathe because I wasn't on call constantly.   I wasn't waiting for the call that I knew with certainty was coming. I wasn't constantly having to advocate and explain his behaviors. I understand that many of these negative behaviors still exist but the approach to resolving them is quite different.  I believe that approach is working for my son.

I am going to go out on a limb and say that I don't generally think restrictive environments are all that great for Aspergers.  I certainly don't think Asperger's is a behavior problem but when not managed correctly it becomes a behavior problem. I am not even sure I like the word "managed" but understood and accommodated doesn't really cut it either. This leads me to say the demands that are placed on kids on the spectrum in large Middle School and High School environments aren't that great either. There is so much talk about including special populations but what if inclusion sometimes is counterproductive.  Not to mention that inclusion is sometimes done without much thought for neural typical kids or special need kids. Sometimes well intention inclusion comes at a cost to both populations.  I do know that a child in a environment that is too overwhelming can't learn academically and they suffer both socially and emotionally regardless if it is the most restrictive or most inclusive environment. . I still don't know what the middle ground is between too large of environment and one that is too restrictive?  Finding the sweet spot seems elusive.

Previous Post about  my son and Aspergers
What is in a Label?
Elephant in the Room ( Asperger's Diagnosis)
Lost in Transition (placement meeting for new school)
End of 8th Grade
The Choices We Make (first day of  new school)

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