Thursday, November 11, 2010

Dr. Milanese, Take 2

A year (and six weeks) later, and everything was different. Even the location, as the developmental pediatrics department had moved from inside CCMC to a building down the street.

At 9am Dr. Milanese and Jen, the speech pathologist, came to get us, and brought us to a room much like last year with the same spread of toys laid out. For a moment, Ethan didn't want to go in and when we did get in he clung to me. Then, he saw the same Sesame Street toy from last year on the table and began playing with it. From there, I was delightfully bombarded by the improvements he's made, one after another.

Last year: would only play with the Sesame Street toy. In fact, mostly he wanted to play with one button on the Sesame Street toy. He may have briefly looked at something else Jen introduced for a moment, but then it was back to the toy. When we took the toy away, he lay on the floor and cried.

This year: Gravited to that prefered toy first, but was quickly distracted when Jen asked him to look at something else. He was looking at her, smiling, laughing, requesting.

Last year: Ignored every toy she had layed out in the corner of the room to entice him.

This year: Ethan quickly found the truck and pushed it around, rolled around and threw several of the little balls, and played with the Jack in the Box type toy.

Last year: Ethan didn't look at either of them at all and used a couple of words to request something from me.

This year: While eye contact is still an issue, it was much improved and he used many words and short sentences/phrases to request and comment.

Last year: If we got to the imitation portion of the assessment, I either don't remember it or it didn't go well.

This year: He imitated bouncing a toy frog, pushing a car and making a car noise, and pushing a wooden block as if it were a car.

Last year: I KNOW we didn't get to pretend play.

This year: He pretended to take a drink, and helped Jen put "birthday candles" on a cake for the baby doll, blow them out, and give baby a piece of cake. He even pretended to wipe up when Jen asked him to because the "baby spilled her juice." And he kind of pretended to put the baby to sleep, before he decided he was done with all of that.

I sat there through all of this, marveling and wondering. I marveled at all of the building blocks to child development and how the pieces fit together. I marveled at how far Ethan has come and wondered just what it was that made the biggest difference: Just time and maturity? All of the therapy? God's divine hand? An interplay of the three?

I said as much to Dr. Milanese, in relation to the "sensory diet" she had recommended in her original report. She had thought it would greatly benefit Ethan, and we certainly tried different things. Nothing really worked. Certain techniques provided maybe a little bit of help, but there was no holy grail.

"I keep wondering what exactly it is that's helped him improve in some areas," I told her. In my mind I was referring especially to his affinity for opening and closing doors and flipping light switches, particularly at other people's houses. "I just wonder if it was something we did or if his brain just needed to make some new connections or it was just time." Dr. Milanese acknowledge that was the nature of autism and in particular the sensory issues -- they can make recommendations but they don't work for every child and they even can work differently at different times.

At the end of the appointment they mentioned how different he seemed from last time and the many strides he's made. While I didn't expect them to tell me his autism diagnosis had magically fallen off of him, they did say he's less symptomatic of autism.

I wrote about that after on Facebook and then started thinking. If someone had cancer and the doctor had told them the chemo was shrinking it, they'd report it and it'd be a wonderful thing. But autism is woven into a person. It's part of their complete makeup. Maybe I'm overanalyzing here, but I hated to think I sounded as if we were just trying to wipe it off of him. It's not what I meant.

I'm at the point now where the big thing to me is not the diagnosis. I know there are parents out there who out of the pain and desperation do everything in their power to see if they can help their child lose that diagnosis before the so-called "critical" age of 5 or 6. I've kind of given all of that part over to God. There are some amazing things about autism, and there are good things about autism, for both Ethan and for all of us. For me, when I wrote about the "symptoms," it's more the relating part. That's what has always been hardest for me, with autism in general. It's seeing someone who acts like they don't care or want to relate to you, and believing that actually they do but just don't know how. We've spent a lot of time in the past year encouraging Ethan to engage, not run in the other room and play the keyboard while we're all in the other room playing, for example. Maybe if I knew he was a natural introvert who really just wanted to do that, it'd be different. But what has gotten to me is that the more we encourage him gently, and the more he progresses, we see that he WANTS to be with us. When he's prodded just a little bit, a big grin spreads across his face and he runs to us. He follows Anna all over the place now. He spends much less time alone when it's just our family (bigger gatherings still stress him).

So to me, that was the joy I was feeling. Not that he had less autism per se, but that he was coming out of his shell. He wasn't stressed and miserable in the room but actually a little playful. His little personality is coming out more and more and we see he actually kind of likes attention, kind of likes people and really longs for someone to draw him out. Certain barriers that had prevented him from relating are beginning to melt away.

I don't know what this means for the future. But I deeply appreciate being able to relate to my son, and that other people are beginning to see what's in there.

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