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.

When Did We Know?

Whenever we first speak with a new service provider they always seem to ask the question when did we know?  Know that our child was different? Was special? Was on the Autistic Spectrum? In retrospect, the signs were always there but Barney was not diagnosed with Asperger's Syndrome until just after his 6th birthday. 


Let me back up a bit. Barney was born in May 2004, a healthy, full-term, 7 pound 8 ounce bundle of spice. At that time I had a 18 month old son as well. In the hospital, I sent my hours old baby to the night nursery in order to get some sleep.  I'd recently been through this newborn business and knew to take advantage of sleeping whenever possible. Unfortunately the nursery would not keep him because no matter what they tried, he would not settle down; I thought maybe the head night nurse was having a bad night.  They brought Barney to me where he did settle down but he nursed so hard and so long by morning my nipples were bleeding.  I was no first time nurser.  My older son had only weaned about six months prior and I had never bled before, so clearly something was different this time around. 


We brought our new baby home to the chaos of a toddler.  I'd always read that second children can sleep through anything so I wasn't too worried.  Not this kid!  He screamed, nursed, and screamed some more, for weeks on end.  Yes, he did sleep of course, just not as much or as long as typical newborns. As in the hospital, no one but Mommy could soothe this child;  he needed to be in my arms at all times.  The co-sleeper I had used with his brother remained empty.  Barney only slept if he had skin to skin contact with me.


OK, so every baby is different.  Maybe my first born was just incredibly easy and this was they way most babies acted.  I soldiered on because this was my child and I loved him unconditionally.  Barney continued to eat at an alarming frequency, gaining weight so quickly from breast milk that my family joked I was feeding him chocolate milk. He had gained over 3 pounds by his 4 week check up.  I expressed concern to his pediatrician who assured me that babies cannot overfeed themselves while nursing.  Still I worried, it felt like his brain never received the message that he was satiated. Little did I know what lay ahead.