Thursday, August 15, 2013

Back to the Brain Doctor


Yesterday Theo and I returned to the neurologist we'd last seen Theo in 2009. In those days we visited a bunch of times in the span of two years, and those appts were always an emotional strain for me. As Theo and I sat in the office yesterday waiting for the doctor, Theo lined up legos in a pattern as he probably would have in 2009, only this time he was constructing an entire game in his head using the surrounding toys. This time he could tell me what he was imagining... I wondered what he was imagining when he was 5 and we first started seeing this doctor. The thought of it made me teary.

Then through the wall I could hear the doctor talking to parents in the office next door, and they were talking about the kid's noises, his gibberish. Parents starting out on this journey into autism. That got me going, too. The beginning is so tough. It's never easy, but when your baby is so little... man. I'm glad those days are behind us.

A few days ago, with the help of YouTube, Theo and Melody learned about autism and that Theo has it, along with some of their friends. He pointed out things in the videos that he could relate to--clothing tags bothering him, trouble communicating (I was shocked to hear him call that out), and, lol, liking video games and TV (I told him that was all kids).

Theo took the news great. Melody asked if autism was good or bad and I explained that it was neither. The conversation went as well as it could have, and I'm glad Theo understood we were going to a brain doctor to talk about autism. We needed an updated evaluation because this year, we start our apps for j...j...junior high. Phew, that was hard to get out.

The doc came in and Theo delivered a friendly but clearly jammed-into-his-brain "Hi, nice to meet you." The doc didn't remember us yet, but he read his old reports and could immediately see a big difference in Theo's attention and demeanor.

He sat and talked with Theo awhile, about how often he gets services in school, whether he's bullied, about his friends, what he did for his birthday. I was worried when Theo could not think of anything we did when we went to Mystic last weekend, a trip he enjoyed so much. But he does freeze up when he's in shy mode.

We talked at length about Theo, what my biggest concerns are... I mainly talked about his obsessive need for revenge when he's been wronged, and his desire for fairness. The doctor wrote this down and joked that his notes read like a novel tagline.

We talked about other concerns and he didn't think most problems I named were a big deal for his age. Occasional aggression at school didn't worry him since it's only occasional and we're dealing with it. We talked about stimming and how he still does it all the time but mostly during pretend play since his imagination is going all day and he's always creating games and worlds. He doesn't walk around flapping his arms anymore. The doc was thrilled. I complained that Theo is a messy eater and it doesn't bother him at all to have chocolate or something all over his face, and he chuckled that that's not autistic behavior. I agreed, it's pretty much the opposite of sensory issues, which he has none of other than disliking tags in his clothes. He's fine with loud music and noises and loves the theatre. I mom-bragged to the doc that he's great at improv and enjoys doing shows.

I gushed about Theo as the sweetest kid--an incredible brother, incredibly compliant, funny (the doc tested his understanding of sarcasm and jokes and Theo did well. There was a time he didn't understand jokes or expressions!)

During the appt Theo kept putting his legs up on the chair and I kept tapping them to indicate he put them down. I didn't realize the doc was observing me, too. More on that later.

He had Theo read a bunch of words that increased in difficulty, and occasionally asked their definitions. He declared him at an early 4th grade reading level, which sounds about right. A year behind sounds pretty good considering years ago I worried whether he'd ever read (or hold a conversation for that matter).

The doc drew some shapes for Theo to copy. I smiled when he said "good pencil grip." Years of occupational therapists working on this, and it's finally happening! But the lines were shaky and the shapes were terrible as Theo rushed through them. The next batch was better when he was asked to slow down.

Theo was asked a series of questions. "What animal gives us milk?" He said cow, and when the doc asked what else, Theo laughed thinking that was a joke. Giggle! He named some animals that lay eggs and answered a bunch of math questions correctly, including some that involved logic, which impressed the doc.

He said Theo's of average intelligence. In his old report, he'd written Theo was borderline. Wow. Not every parent is thrilled to hear "average," but this one was! He kept saying Theo was smart-; picture Forest Gump's face when Jenny tells him their son is smart, and that was me. He even wondered if Theo was aspbergery (his words) which shocked me, since I never saw him that way, and he said that time would tell. Apparently we'll know more when the hormones kick in. EEP! Puberty terrifies me!

By the way, this doctor is kind, personable, funny--and he's also blunt. He had no problem telling me years ago that he thought my GFCF attempts were pointless (he was right, thankfully) or that I was babying Theo (he didn't put it quite like that). So it took me off guard when he suddenly told me he'd been watching me, and he's delighted by everything I'm doing. He said it was just all so...proper. "I don't get a lot of mothers like you in here," he said. My throat went dry. Even now, thinking about it, I am on the brink of tears. I never feel like I'm the warrior mom my friends are and that I don't do enough for Theo. And here was an expert saying I'm getting it right. He said he wasn't just being nice (thanks to previous experience, I believed him.) He used my quietly tapping Theo's leg as an example, and said I'm calm.

Now, people tend to tell me I'm calm. It's nice to hear, but never rings true... I'm good at putting on a calm show. The only person who would never say that to me would be my husband, who's privy to watching me go off the rails with my children. But still, the doctor reinforced what I know but can't always implement...that Theo needs me to be calm and even, even when he's melting down. My frustration doesn't help him. This is true for any kid, of course.

Ultimately what I take away from this appointment are nuggets from the doc: that on the spectrum, Theo's autism is mild; that he's smart; that the difference between this time and last time is night and day. These are things I know. But it's nice to hear from not-his-mom.

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