Pokemon, Lego & Percy Jackson

What are your child's special interests? This question I am so often asked by the professionals makes me want to laugh.

I think back to Barney's very first evaluation done by the early intervention team when he was 2.5.  The team had just diagnosed him with Sensory Processing Disorder and a delay in pragmatic language.  Given my own teaching experience and M.Ed. in SPED, the pragmatics issue set off warning bells. So I asked them, "Is this what Asperger's looks like in toddlers?"  I was assured in no uncertain terms that he had such a wide range of interests and abilities he could not possibly be on the spectrum. Looking around our playroom they identified the play kitchen, train table (Thomas, of course),  Duplo building toys, stuffed animals, puzzles, variety of books and games that Barney enjoyed with equal enthusiasm. I was told that when they go into a house and see only one theme reflected ( Barney, Elmo, Thomas, etc.) that's an indication of spectrum behavior, but I didn't need to worry. Barney loved fire trucks, The Backyardigans, making block towers, cooking pretend food, numbers and letters, being read to and the color green.

I was relieved.  I threw myself into learning everything I could about SPD. The Out of Sync Child became my bible and  we turned our basement into a sensory gym. We had a plastic slide in the yard which I cleaned up and brought inside.  We got a mini-trampoline, a hoppity ball, a scooter board, a cheap exercise ball and gave him the space to run, jump, crash and fill his sensory needs. He was only 2 and everything I read told me I had until his 5th birthday to change his brain patterns and dammit, that's what I was going to do!

Despite the intensive OT, both at home and privately with a therapist, Barney's problems did not go away.  They changed, some things becoming easier for him and other things harder. In preschool he crashed into anything and everything, knocking over block buildings, dumping baskets of toys, and pushing kids out of his way even at the top of the slide. At 4, it was recommended that we take him for a full Neuro-Psych evaluation.  Of course there was a long waiting list and it took about 7 months to get in.

The Neuro-Psych results indicated a superior IQ, serious sensory issues, attentional issues, ocd tendencies and generalized anxiety. I asked the team, where does he fall on the autism spectrum?  Huh?  They were shocked by my question!  Parents don't ask for spectrum a diagnosis! Once again I was told that Barney had deficits but his strengths were so broad and well rounded that they had no indication that he was on the spectrum.

At that point in time he loved pirates, Little Einsteins, reading anything he could get his hands on, singing and putting on shows, catching bugs and the color green.  His classmates were into Super Heroes which wasn't his thing so he asked me to take him to the library so he could check out some books and teach himself  enough back story to participate in the games at school. The evaluators told me that spectrum kids don't do things like that. Again I felt relief.  When I presented the Neuro-Psych report at the Kindergarten transition meeting I proudly stated, "He's NOT Autistic."

Today Barney still loves to read and be read to.  In school he's reading Harry Potter in his free time, currently on Goblet of Fire.  At home he's reading Percy Jackson and just started The Last Olympian. He loves to build with Lego and is working on his Ninjago collection. He collects Pokemon cards, favors Pokemon ds games and can rattle off facts ad nauseum. In his free time he's teaching himself square roots and long division. Over the weekend he built a catapult out of wood, just for fun. He's also teaching himself to play the drums.  Guess what?  This is what Autism looks like in our house.  Oh, and he still loves the color green.

Tired

So tired today.  And everyday for awhile now.  I promised myself I would get back to blogging in the new year but here it is January 12 and it has been weeks since I posted anything.  I wanted my writing to be witty or informative, or entertaining at the very least.  Can't find the words for that right now.

Barney isn't sleeping well.  He wakes up at dark o'thirty so disregulated that if I do not leap out of bed at the first sound of his voice, disaster strikes.  In a matter of seconds he turns on the blindingly bright hall light.  He heads first to his brother's room where he pulls off all Henry's blankets then dismantles every surface and shelf in one fell swoop: stuffed animals, books, Lego creations, school projects and anything else in his path. Henry understandably yells at him.  Not only has he been rudely awakened from a deep sleep  but he is now freezing.  We keep our house at 60 degrees over night and Barney wakes up well before the morning heat comes on.

Barney's next stop is our bed.  He does not want anything to do with his father.  He wants "MOMMY ONLY". He doesn't snuggle but lies on top of me and kicks or bangs his arms keeping his body in motion at all times.  I try to hold him, give him the deep pressure he so badly craves but nothing is enough.  If I loose my patience with him he leaps up and tears apart our bed, then runs screaming down the hall.  He knows full well that he has enraged his father which terrifies him, but he cannot stop himself. He runs into his own room, slams the door, and rips apart his bedroom.  When furniture hits the door no matter how little sleep I have had, I have no choice but to get up. It could be 6:30 or 6:00 or 5:30 or 5:00.  Its always my job.

That's why I force myself to get up when I first hear him.  And that's why I'm so tired I can't think straight.