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May 01, 2008

Bumps In The Road

Bump Yea, I know. April is over. Autism Awareness month is over. It's May now. Time for a new topic.

Right?

Not necessarily. For parents with children on the Autism Spectrum, life doesn't go back to being typical because April is over.

As many of you know from reading my posts and my blog site, my 9 year old son has Aspergers Syndrome, part of the Autism Spectrum Disorders.

For the most part, we're at a good place right now. He's on a low dose of an ADHD med. He's on the Gluten/Casein Free Diet. He's got a 504 Plan to level the playing field in school. We've got a handle on the strategies that make day to day stuff go OK. He's happy, has friends this year and is doing well academically in school.

But he's not what some would say recovered. If you took away all the supports, his symptoms increase. And sometimes you don't even need to take away the supports.

Some days are just worse than others. Which is what all parents go through. Right? Some days are better, some are worse.

On a good day he plays for an hour or so with the neighborhood kids and comes home happy. On a good day he goes with the flow of things with only little reminders. On a good day he eats 3 meals that have variety in them and almost have each food group in them.

But on a bad day? He comes home from playing with the neighborhood kids complaining that they were stepping on the bushes and killing them and destroying the precious plants we need to keep our air clean and don't they know better - he even told them so himself, but they told him he was being to bossy. He refuses to eat. Because the food doesn't smell right, or look right or taste right. He bangs his head to go to sleep. He becomes extremely literal and picks up odd little rituals and obsessions. He doesn't play, he sorts and organizes (sometimes his toys, sometimes his unusual collections of things).

We were in a really good place for a few months. But it never lasts.

About 3 weeks ago I noticed some slipping. Then my parents came for a visit. That really threw him. As much as he loves them, he hates it when people stay at our house, no matter who they are. They change things around and leave their stuff around the house. And it bothers him because it is different. Even thought it's a good different.

They left and I was hoping he would swing back into OK mode. But he didn't. The rigidness is slowly settling in more and more. The literalness is slowly settling back in. And the patterns are slowly settling back in. He's looking at me less when we are talking. The palilalia is increasing.

Then, within the last 2 weeks 2 big things happened in his life. He got Lyme's Disease. No biggee - give him a round of antibiotics. Except he's got Leaky Gut Syndrome which is why he's on the Gluten/Casein Free Diet. Antibiotics are great at killing of Lyme's Disease, and also his stomach. He's already having 'bathroom issues' and possible a yeast infection. Now Dad is out of town for 5 days. It's his first business trip in years. But it's also the first of three in the next two months. Between him slowly slipping, my parents visit, the antibiotic and a business trip I'm losing him again.

After snuggling last night in bed with us we told him it was time to get into bed. We of course meant HIS bed. He said, "But I'm in bed." We needed to correct ourselves and say, "It's time to move to your bed now." It may sound like he's being 'smart' with us, but he's not - he's just that literal at times.

Another example of a ritual/pattern that just popped up over the past week: "Son, you have 3 minutes until it's time to brush your teeth for bed." He'll reply with a "30 minutes?" I'll answer back "No, THREE minutes." And he'll answer "OK, 33 minutes". He does this with any time warning he is given. 5 minutes? OK, 50 minutes. No 5. OK, 55. It's a pattern he gets stuck in. I have no idea why this pattern. Two years ago he put 'on the 4th of July' at the end of EVERY sentence for about 2 months.

I truly love my son. Some days I truly hate Autism. Except Autism is who my son is. So that means I have to love Autism, right? I wouldn't change him for the world, even if I had the choice. Because then he wouldn't be him. He wouldn't be my son. And I love my son. All of him. Inside and out. And we'll work through this bump in the road too. Together. As a family. Because that's what parents do for their children. They love them no matter what and who they are. Even on the rough days.   

This post is an original DC Metro Moms post by Robin. When not coming up with new strategies and behavior techniques for her son, she can be found blogging over at MyLifeAsItIs.

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