Tuesday, October 5, 2010

The Secret Society of Autism Parents

Joseph isn't the only one who has trouble developing age appropriate relationships with his peers. I've always been socially awkward. I've always felt that I'm different from everybody else, that I've got very little in common with other people. This makes it difficult for me to relate to others when it comes to social niceties. My topics of conversation tend to be a little more obscure and esoteric, or non-existent since the scope of my life is rather limited these days. Let's just say, I don't chat about the weather, and you can forget about sports. :)

Parenting a child who is autistic has become my primary activity, as I think it is for many others. The downside to this is that I generally have little energy left for anything else. But the upside is that I have an instant connection with other autism parents, and I think we're all happy to talk and listen about each other's kids and the challenges that come with being in the unique situation in which we find ourselves.

I think that I'm not alone in finding immense comfort in talking to other autism parents. Isolation is a serious problem for us, for many reasons. It's imposed on us, because people who aren't in our situation can't truly understand what we're dealing with, and self-imposed because we are hesitant to do the things that typical parents do with typical kids like going to the movies, eating at restaurants (even if we could afford it), going to the library, because we never know when the next meltdown is going to come. As for having people over, our house is always such a mess we don't want to expose anyone to it.

Kristy and I stopped going to Mass because we couldn't keep Joseph under control there either and it made us self-conscious. Don't get me wrong, this was our hang-up, it's not because anyone was rude to us at church. We started going every week again after we went to a different church and found ourselves sitting next to a single mom with two kids, one of whom is a seven year old boy with autism. After Mass, we told her that Joseph is autistic, she said she recognized the signs and asked if we were going to be going to that Mass regularly because it was nice to be there with other people who "get it."

The isolation started long before the diagnosis, or even suspicion that Joseph was autistic. Putting a label on it finally told us that we're not alone, helped us to recognize the isolation and to start doing something about it. I feel like being the parent of a child with autism is like being a member of an ever-growing fraternity, like Skull and Bones or the Freemasons. I feel like we should have our own secret handshake.

If you're the parent of a child with autism in the Central Ohio area, or you find yourself in the area, let me know. Maybe we can hang out at the McDonald's Playplace and chat or something. :) We need to stick together. Also, I want to tell you that I appreciate the friendship and support of all our family and friends, new and old, parents of autistic kids or not. We've drifted away from many of you and see you less often. All I can say is, I hope that we will learn to handle things better and our exile from having social lives will be a temporary situation.

Oh, and in other news, Joseph is talking a lot more and we're going to be resuming speech therapy on the 20th with a different therapist. Fingers crossed!

1 comment:

  1. Lovely post, you have described my own life perfectly. My son is now 3 and was diagnosed just before his second birthday. I find my friendships are changing and I feel far more comfortable with parents of other children with autism. They just 'get it', no raised eyebrows or pursed lips etc.

    One big, and good, change I have noticed in myself is that I am far more open and tolerant now than I used to be. Mind you, I thought I was before, but I see a whole new world now:)