Tuesday, May 4, 2010

Puzzle Pieces

There are many, many times when I think how appropriate it is that the common symbol for autism is a puzzle piece. First, many kids with autism (Ethan included!) enjoy puzzles for various reasons...it taps into their visual skills, it's something they can do quietly and indepently, it's calming (makes me think of working on a jigsaw puzzle on a rainy afternoon). But beyond that, autism is a complex puzzle made up of many individual pieces. Autism truly is the jigsaw puzzle. And each child is a different jigsaw puzzle. In fact, I'd go beyond that and say autism can be like a jigsaw puzzle that changes from day to day, so that if a certain piece fit last week in a spot, if you were to take the puzzle apart and try again, that piece might no longer fit. Again and again, I'm reminded how gloriously and frustratingly complex and intricate the brain is.

I'm a mom, and so I know my son. All of us who are moms are like this with our kids. I think more than anyone, we "get" them. We know their little idiosyncracies and what will set them off, and what will calm them down. It's no different with Ethan...except sometimes I am only in tune to the fact that something is "off," and I'm not quite sure how to fix it. I guess all parents do feel that way sometimes...it just happens more frequently with kids on the autism spectrum.

On any given day I know that Ethan is not going to act like a completely "typical" kid. He's going to be more repetitive in his actions and his language. He's not going to be as social, except with family. He might ignore us and get lost in a toy with lots of lights and music. I expect those things. But then there are the days, or situations, when I know he's more "off" than usual. At those times, he can't stay in one place or focus well. He looks for doors to open and close or lights to switch off. His routines become even more rigid as he bounces from one thing to the next...slam door, attempt to flush toilet, back to another door, over to a light switch, etc. He looks for more activity like hanging upside or sprawling on the floor to escape, or maybe to calm down.

From the very beginning I was told these were sensory issues and he probably felt overwhelmed. The developmental pediatrician mentioned a "sensory diet" to help with that. I ended up getting lots of stuff from the internet about things I could do. Brushing his skin and doing compressions on his joints. Massage. Pushing around heavy things. Jumping on a trampoline. Eating crunchy food. Finding a quiet spot where he can "download" and relax. Getting rolled up in a blanket. The list goes on and on. I stared at all of that and thought that it was all very helpful information to have, except I didn't know what to do, or when, or how often. It would be like a doctor telling you to exercise, and giving you a huge list of possibilities and telling you you'd only be helping your body if you did a certain combination of exercises in a certain way, and that it could fluctuate at any time, and you'd just have to keep trying and find out.

The possibilities have seemed endless. I started brushing and doing compressions on Ethan until he kept laughing about it and wanted me to stop...so I did until he got "off" again back around Easter so now I've started them again. In the past week I've gone back to some of this stuff, also letting him do some jumping throughout the day and giving him lots of deep pressure hugs. I think I'm seeing improvement in his frame of mind, but I'm not sure. Other days I'll do the brush on him and he doesn't want it, as if he's too sensitive that day. Sometimes he seems to really need the jumping and other days not so much. Now he's really wanting to swing upside down on his belly instead of sitting on a swing, so I'm thinking some kind of vestibular thing is going on. People have said maybe it's his inner ears and allergies with this time of year but there's no way to know really. He can't tell me. That's one of the most frustrating parts. Oh, how I wish I knew. I have to watch for other cues. Thankfully if something really actually bothers him he says "all done." I know what he absolutely doesn't want. But many times I don't know what would actually help him best.

I think about this a lot in relation to doors. I wonder what Ethan's thinking when he has to constantly play with them at the grandparents' house. Is there something soothing about the way the sliding door moves and sounds? Is it just an easy way to escape? Do I put my foot down and stop him or let him relieve his stress? There are days when I actually know a part of him wants to be stopped. He will put up a fuss but then do much better when he's not allowed to continue, after he gets over his initial anxiety.

The constantly changing puzzle. I think about this and pray about this often because like all of us I want the best for my child. I don't want to unknowingly create extra stress for him or not bring him the comfort he needs. I just have to believe the grace is there if I don't do it perfectly. For all of us, parenting is often a trial and error experience. And thankfully I do feel all kids in their own way sense when our hearts are right. They are more forgiving many times than we are of ourselves.

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