Hope

I’ve been feeling frustrated and defeated all day. Buddy started a new pre-school a few weeks ago, and while we’ve noticed improvements in his communication and the way he is playing, he’s been very aggressive with his baby sister. I think it’s the change in routine that has set him off. Children with autism do no react well when their routines are changed. I keep telling myself it’s the autism, it’s the autism. But it’s still frustrating.

I took them to the park and there was another child slightly older than Buddy. Buddy had no interest in playing with him. Meanwhile this other child was talking very well and very engaging, and eventually came to the conclusion that Buddy was “crazy.”

Ever since I started to become concerned about Buddy’s communication delays, people have been patting me on the back and saying he will start talking. This has been going on for three years. Progress has been made but it is still agonizingly slow, and I’ve yet to have a conversation with him that goes deeper than him making a request. The thing that confuses people is Buddy is obviously incredibly smart, so they tell me he’ll eventually start talking.

But when eventually never seems to get here it is defeatening. Especially when I see where a child his age is, and all of the things that that child is doing that Buddy isn’t.

For a typically developing child, parents have a timeline. He should walk at around a year of age. He should point at seven months. Etc. But with a child with autism you have no timeline. You don’t know when a developmental milestone will happen or if it will happen. A child can be incredibly smart, like Buddy, and still grow up to be so severely autistic that he can’t live on his own. Or he could grow up to be a genius. Or anywhere in between. But since I don’t know I don’t know what to prepare myself for.

Before I had Buddy I did therapy with children with autism, and I saw a lot of parents chase snake oil cure after snake oil cure. When I became concerned about Buddy I decided I wasn’t going to do that. I was going to focus on unconditional acceptance. I found a autism support group in my area and quickly became disenchanted with it because I didn’t hold the extremist views of autism being caused by vaccines. Eh, more on that later.

Anyway, today I was feeling all of the frustration of being a parent with a special needs child, especially when you add the factor of autism where the long term prognosis is so uncertain. He could start talking in sentences tomorrow, learn to socialize and grow up to be independent one day. Or he may not. And after his inability to play with the other little boy, I was feeling pessimistic.

I’ve been aware of research showing that the reason for this uncertainty is not because autism is one disorder, but because it is hundreds of different disorders with differing causes. If we could find which type of autism Buddy has, then we could learn more about his prognosis and even what treatments would be best for him. I’ve been yearning for more research on this, hoping that it would lead to some sort of timeline so I could at least know what to expect.

Which was why, at the end of a long, defeating day, I was so excited to find this article about a genetic study that was doing just that, finding all of the differing genetic markers of autism and linking families with matches.

Finally! The potential for some real answers. Something solid and scientific, not snake oil.

Of course, this research is in it’s infancy so it’s possible there might not be any matches for Buddy. But we could contribute to a growing body of evidence that could help another family down the line. I even plan to submit a sample to see if Buddy’s gene variants are similar to mine. I was diagnosed with autistic tendencies as a child but I grew out of them, which gives me hope that he could. All the same, according to my parents, he is definitely further on the spectrum than I ever was.

This is the hope I have been looking for. Knowing if he’s going to start having conversations at 5, 13 or never. Knowing if I should prepare for a future MIT graduate or to start the process of getting him on disability. And even if we don’t find something that will be helpful for us, it could be helpful for our grandchildren or other family members.

Because the only thing I know for certain now is that Buddy is developing on his own timeline. Where the milestones will fall, or if they ever come up, is anyone’s guess. Anything that can shine some light on the future is greatly appreciated.

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