Friday, May 28, 2010

An epiphany of acceptance...

So Wednesday morning I woke my son up at 5:30 AM so we could prepare for the big field trip to Philadelphia.  We had to be in his classroom no later than 7:15AM.  It was an interesting trip, not bad, but interesting.  When my son was asked to be a "storyteller" and write about the trip he had a difficult time.  He got "in trouble" for this, but really they clearly don't understand my son's limitations and his lacking/lagging skills.  So the worksheet got sent home.  The first question was "How did you get to the field trip?" His response, "on a bus. it took a VERY long time"  And then he was stumped. He was so fixated on the fact that it was a 2+ hour bus ride due to traffic that he couldn't remember anything but the rocks he saw in the gift shop.  The next question was to list three things that he saw at the museum.  He was stuck on the rocks.  He really wanted to write that he saw rocks, but he knew that wasn't the correct answer.  He wasn't able to articulate what he was 'stuck on' and why he couldn't write more.  Since I went with him, his 1:1 got the day off so she couldn't prompt him.  When he got home, he was clearly frustrated about this "storytelling" assignment.  It's clearly out of his skill set for his Asperger's brain.  At school this is interpreted as "defiant" and "oppositional", when in fact my little boy blue is just frustrated and confused.  He wants to comply and conform but he just has no idea how to.

This morning I took my mom & our advocate to visit a private self-contained special education skill and learned what could be.  I also received information about a nearby district's autism program. O M G my poor boy is being tortured.  They clearly don't know what they are doing in his school though they all claim to have taught Asperger's kids & Autistic kids before.  I was told "All Asperger's kids that I (the speaker) have worked with are compliant and respectful to authority."  (On a side note I called a local autistic parents network, the person whom I spoke with was a BCABA behaviorist.  I told him the above and a few other choice comments that were made at my son's IEP meeting.  The poor guy had to put the phone down he was laughing so hard.  He couldn't help me as their group is more for early intervention and more profoundly autistic families but referred me to another agency.  He also asked me the name of my son's school district so they might offer some training and education. :) ) While the small private school was very small (about 60 total students ranging in age from 5-21), it was clearly a positive environment with well defined boundaries and most of all consistency.  At home I am consistent, but flexible, many options are negotiable some are not (such as safety--no bike or scooter without a helmet).  Then in talking to another close friend who's daughter stayed behind a grade, we had an epiphany. While the "toss him out of the district" was initially  hard to hear, it may actually be a blessing in disguise.  I taped the IEP meeting, it is entertaining and cyclical.  These people have clearly never met a truly Asperger's child. My kid is often a text book Aspie.  He has social deficits.  He has serious issues with pragmatic language, expressive language, and reciprocal communication.  He is very bright and when in the proper environment he clearly excels academically.  He is a wonderful reader.

So back to my friend, her daughter repeated K. She said that aside from my son (who in K only spoke through her daughter, occasionally directly to the teacher), her daughter really didn't have any friends their class.  Leaving her behind was a great choice, and now though older than her classmates she has several good friends.  I thought and noticed that my son is better friends with 1st graders & 3rd graders than he is with his peers in 2nd grade.  Sure their "friendly" but they are not friends.  He has plenty of friends from camp, swimming, Cub Scouts & baseball that are 2nd graders. So it seems there might be something in the water that affects his class.  They are a, well, unique lot. 

While I think the small private school would be appropriate for him, I think a larger environment (like the neighboring district) with more opportunity for inclusion with his non-disabled peers would be better.  If the potential for interaction with non-disabled peers is not available, than the small private school is a much better choice than his current school.  It seems that his current school has already made up their mind about him.  They refuse to listen to scientific reasoning or reports from actual board certified experts.  They'd rather listen to a "case manager' who "took a class in ABA, once" as their defined expert.  (it has been confirmed that there are MANY other parents who have serious issues with this 'case manager') 

I think the best decision I can make for my son is to get him out of his current toxic environment & into a structured, loving environment.  Being Honest Mom, I discussed this with my son.  He's been thinking about it, his biggest worry was missing out on the after school sports program that starts in 3rd grade. (Not an issue thanks to the IDEA).  He then asked me "what if I like the new school, do I HAVE to go back to my (current) school?" I just smiled and said one step at a time.  It made my decision easier as clearly my son knows that he deserves to be treated better.

So now my big decisions are: 1. WHICH school is a better choice than where Blue is now? 2. Fight over ESY.  Up until now the big push was for ESY OT and social skills (via camp).  As of the last IEP meeting (which I taped) camp was no longer an option. They wanted ESY at the new school so that Blue "could acclimate and easily transition to his class in the fall."  Horse poop!  He's got a filled summer schedule with a variety of activities.  He has NEVER regressed in academics except for first grade math and that regression occurred DURING the school year, not break, because of a crappy teacher.  He is at or above grade level for reading & language arts.  They don't do social skills in ESY. But he is going to scout & sport camps this summer with kids he is appropriately social with.  So I'll be fighting against this issue. I have no intention in signing the release of records until I am ready, to which the nasty 'case manager' replies that "I am holding up the process."  Well criminy you make this "team decision" without me in the fist week of May. Spring it on me the second week of May (having not investigated ANY schools).  Then the last week of May threaten me with 'legal action' because now you have two schools that I have never heard of and want me to give you carte blanche with my son's records.  Ah no! Quite frankly lady, I don't trust you!

I'm going to go with my gut feelings on the school selection.

My main "concern" is that the parents are a bunch of gossip mongers.  So are staff.  Staff are prohibited by Federal Law to release information about my child's placement without my consent.  I don't have to worry about my son saying anything.  But what would be a good response to the parents (and students) when they realize my son is not returning.  Of course this isn't until fall... he sees a couple of the boys in outside activities (and one is a total nag for information).  My current practice conversation..

Nosy Parent... "So Little Johnny has told me that Little Boy Blue didn't come back to the 3rd grade class, what happened?"
Momzilla..."it is what it is"
Nosy Parent..."???"
(hopefully they'll get the clue that it isn't any of their gosh darn business and I have nothing to say.)

So what do you think?

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