Sunday, August 16, 2009

Welcome to Autismland, Part 2

After he was diagnosed, my husband and I dealt with it in different ways. I kept combing through every resource that I could, trying to understand every possible intervention to try to see what would work best, getting familiar with all the technical terms and jargon as fast as I could. The one thing every resource agreed on was that the earlier the interventions started, the more likely the child would have a higher functionality. We were losing months just getting through the red tape and it seemed like there was an everpresent clock ticking away in my head. Every second lost was a lost opportunity. I started researching user-friendly therapies that I could do at home. The easiest were sensory therapies (a good resource is "The Out Of Sync Child Has Fun") and oral motor therapies (like brushing the inside of his mouth with nuk toothbrushes).

My husband had a harder time seeing the autism. After we were given the diagnosis, his response to the professional was "I don't care what you call it, as long as you give him the help he needs". I am so thankful for my husband, and was so glad that we were in agreement on getting started with the interventions. What I didn't realize was just how long it would take for him to accept it, and be able to see that this was more than just some buzzword attached to our son. It took time for him to be able to see the autism.

One of the books mentioned that the way we reacted as a couple was a very common, almost stereotypical reaction. It was a very hard time for everyone in our household. It's a lot to accept, and there's also this stigma attached that its not okay to talk about it. The first year seemed like there wasn't enough time to process anything. What I didn't realize was that I really needed to be able to talk to someone, anyone, about what I was feeling. When that made sense to me, I was shocked to realize that I couldn't think of anyone that was ready and available to talk with me about this. I had the teachers and therapists for all the candid discussions about what was working well and where there was struggling, but having this kind of talk with them seemed above and beyond the call of duty.

If there's one bit of insight to gain from any of these words, its this:

You have to talk about what you're going through, when you are going through it, with SOMEBODY. Period. If you don't have someone in your life that you feel comfortable sharing this with, find someone. Take a risk, and share what's going on inside you, because if you don't, you will burn yourself up from the inside out, leaving you worthless to help your child. If you won't do it for yourself, do it for your son or daughter. This is not some touch-y, feel-y propaganda about sharing your feelings. This is coming from an extreme introvert, someone who's nature is to bottle everything up inside, being more concerned with others than themselves. Bottling this up WILL BREAK YOU. Is that clear enough? You're not imposing on someone else. Give someone the chance to help you heal, so you can give your special needs child the care they need.

Whoo! I got a little excited, there. Let me breathe for a minute. Okay, back to our regularly scheduled program,...

I became a stay home mom, took care of my two young children, tried to take advantage of teachable moments during the day, clean house, and keep researching. I became a full-fledged hermit, in truth.

After age 3, the teachers no longer come to your home, so my son had to go to Croydon Avenue School. When the school year started, I had to watch my 3 year old ride away on the school bus (John had called into work to come in late, because he knew I'd be a mess). While my son was at school half days, I was at home, caring for our new baby and trying to get caught up on housework. Since I was also "coping" by being a hermit, I didn't want to leave the house. I started getting nervous being around other people, for fear that if they asked me a well-meaning, innocent question like "How are you, today?", the levy would break and I'd flood someone with everything that was rolling and churning inside me. That, in my mind, would have been unforgivable (This type of thinking is messed up, by the way). There was also the fear that I would be jealous of friends that had typical children with typical problems,... that I would feel more alienated in talking with them about the fears that were running unfettered through my being (This does happen, unfortunately, and its normal for you to run into this, especially during that first year of being labeled).

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Welcome To Steps For Michelle

About marriage, motherhood, dealing with autism, figuring out the path before you, and whatever right-brain thoughts happen to pop in along the way.

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