There have been studies reporting that parents raising children with Autism experience stress akin to combat soldiers with post-traumatic stress disorder (PTSD). This makes total sense to me. That’s a pretty accurate way to describe how I feel all the time. The constant anxiety, walking on eggshells, always trying to stay one step ahead of her and of everything happening (or what might happen) around us. Always anticipating what might occur and having at least 3 plans to manage however she might react.
As bus drop-off time approached, I got ready. I’m always nervous as this time of day approaches because I never know what she’ll be like when she walks off the bus: happy, angry, communicative, quiet, etc. Still, I prepare. I got the snack and a cold cup of water. Got the baby into the wagon so I could walk down to the bus stop. Halfway down there I heard the dreaded lawnmower and leaf blowers. Nothing can set her sensory system into a tailspin like those sounds. With just five minutes till drop-off time, I realized I’d have to change the game plan dramatically. Those blowers would surely kick off a sensory reaction and meltdown. After an already rough week, I just couldn’t put her through that. I turned around, pulled the baby out of the wagon and tossed him into the car, grabbed my wallet and my daughter’s headphones.
Drove up to the bus stop right in time and made it there just as the bus was pulling up. Since the blowers were just down the street, she already heard them, started struggling, and I had to go onto the bus to get her off. I put the headphones on her, helped her into my car, and we drove away. We ended up at a 7-11 and got a slurpee before driving around a bit, hoping that by the time we got home the mowers would be gone.
There was no sign of them when we pulled back onto our street. Just nice, freshly manicured lawns. We walked into the house and there was her snack waiting for her. The ice cubes in her cup of water melted. The only evidence that I’d had a different plan for the afternoon. She’d never know! I’m always on my toes, always prepared for such a change at the drop of a dime.
This is just one example, but I’m always feeling this way. That kind of suspense and anticipatory anxiety is always with me, afraid to rock the boat, always trying to smooth the waters. Can you relate? Do you feel like this, too? Are you always ON?
Dani Gillman is Cofounder and Head of Marketing at Birdhouse– a Detroit-based startup empowering parents raising children with special needs to learn more about their children through a behavior journaling app for iPhone, Android and the web. She’s also mom to a 10 year old daughter (who happens to have Autism) and a 1 year old son (who has yet to appreciate the value of naps).