My husband and I recently discovered that having a child on the autism spectrum is not only stressful, but very isolating. We seldom have anyone over to our house other than immediate family members because, frankly, it would alarm anyone else too badly.
I have dear friends with children with other disabilities. They attend various functions and go out in public. I have to admit that at times, I am jealous. They take their child to restaurants, shopping—they take them everywhere.
When I am feeling brave, I might take Jac into the store for one or two items but that is about the max of our venturing out. We definitely need to work on that. Of course, I wear my heart on my sleeve and worry way too much what other people think about me or my son, so that also limits my attempts at outings.
Jac's favorite thing at home is to play his music from my cell phone at full blast and dance in front of a mirror. That makes it very hard to talk to someone, not to mention attempting to have an actual conversation.
His second favorite thing is rewinding his favorite part of a movie over and over. So no luck inviting a family over for movie night.
I often wonder if other families feel the same way. I think they must. It's like we are trapped in our own little "House of Autism."
Why should we let autism define our lives? My family and I really need to work on this. I wouldn't even know where to start. Do I invite a family over who also has a child with autism? That could be interesting and definitely entertaining, I'm sure!
After my daughter passed away, I also lost my own identity and purpose in life. How do you go forward from there?
To advocate for our children, we must be informed and active in the decision-making processes—from local to state to national concerns. There are tools to assist in finding helpful resources.