Autism Watch: 2007

All Autism, All The Time?

Posted on: June 24, 2009

I see it a lot — total immersion, 24/7, in autism. All discussions revolve around autism, even during the precious hours where the child’s happy/sleeping/calm. Even if/when mom and dad have quiet time together, thoughts focus on autism. There’s no break, just autism: behaviors, issues, research, treatments, therapies, news articles, shows, radio speakers, seminars, doctors, therapists, providers, the list goes on and on.

I remember back when my son was diagnosed. It was a 24/7 job at first. I didn’t know anything about autism, and I had a lot to learn. I also had a lot to set up, like his new set of medical professionals, schools, Regional Center services, biomedical treatments, not to mention getting our house more autism-friendly for him, for his therapists, and for us. However, after a while, it had to change. I realized it was taking up my whole life. My determination to help my son was taking center place in our lives, the lives of everyone in the family, to the detriment of time with my husband, my other kids, everything.

The need to help my child, of course, is how it should be. I should, as his mother, be his biggest advocate. But, to do that properly, I also need a little bit of time to be me. I need time to be a wife. I need time to be a mom of the other kids. I can’t do that if all I’m doing is looking up the latest autism news, spending hours on the phone lobbying for some law/bill, writing checks to charities, or sitting at meetings listening to what our government, school or other entity is planning to do or not do for our kids. It’s just plain not healthy.

Now, I am still my son’s biggest advocate, along with my husband. We’ve just found a better balance than before. I stay on top of the latest in all things autism, while still taking some time to make a pair of earrings, experiment with a non-GFCF dessert, and read through a magazine about food and wine and travel to places I’ll likely never go. My scrapbook stuff isn’t a dusty mess, and I found I’m pretty good at Wii bowling. I can do all this while writing a check for a chosen charity and contributing something to the autism community.

If you’re one who is constantly sending me something that I should write about, call about, fax about, send money for, or attend to ‘show our solidarity’ or ‘speak up on the behalf of our children,’ don’t assume my lack of response is lack of doing anything. Don’t assume you’re doing so much more than me because you don’t see what I’m doing. I just have other kids, a marriage I want to sustain, and a job. (After all, living on one income in Southern California, having four kids who want to eat, have medical coverage and attend college is darn near impossible.) I tire of the haughty attitudes I’ve encountered several times because I’m unable to afford all the time necessary to ‘make change’ and still actually parent my children, particularly the child who needs my help the most.

Anyway…if you’re having a rough day or feeling depressed, I think that’s normal. Our lives are stressful and challenging and exhausting. But, step away a bit. Share something on your Facebook that’s not autism-related. Watch something funny on TV or play a silly game on the computer. Even just a few minutes not devoted to autism will make you feel better.

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1 Response to "All Autism, All The Time?"

Well Said. Very well said. I will take your advice now and stop scrolling through autism related blogs for the night. I need the rest. We all do.

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