After 28 plus years of raising a child with autism, I have come to realize that my brain is near death. I'm not sure what they mean about using only 10% of our brain's capacity, but in my case, I've used, maybe, 80% to date. Yes, I can still teach. Yes, I can still drive a car, although that comes into question regularly. Memory? I can prepare a meal from scratch, but scratch my head when it doesn't taste like my cooking of years ago. I relate to those people who say they head out to accomplish an errand or two and return with nothing. That's ordinary stuff.
No, I'm talking about the brain cells that are lost when one is a parent. Especially when one is the parent of a special child. Here are the directions I gave my sister recently, to get her from Lancaster, PA to the Mill Works in Hershey, PA.
Take 743. Veer left at the Giant onto Fishburn. Stay on Fishburn until you look for CVS on Chocolate Ave. Go straight into a weird little area. Go right at the dead end, then left at the next dead end. At stop sign, go left and look for the mill after you go under bridge.
When my brother-in-law handed me these directions and told me he used his GPS for clarity during our first drink at the Mill Works, we all laughed. This, however, is no laughing matter. Apparently I can no longer stay under the radar of pretend sanity. I have fought too many battles, which continue to this day and will never end. I have worried about my children daily for thirty years, typical of most parents. As all parents know, life has unimaginable surprises at every turn. Our greatest hope is that our children live long lives. Can we ask them if they are happy and they say, "Yes, I think so." Can we keep them drug free and out of jail? Can we keep them healthy? Questions for all parents of normal children....
The parent of a special child asks, "Can I find the perfect care provider for after I die? Can I keep my child from being bullied? How about stealing? How can I keep him from being targeted by an unscrupulous soul who preys on the innocent? Can I make sure he eats and bathes daily? How about washing his hair? Can I make sure he is brushing his teeth? After I die, I have these and many more concerns. Can I make sure nobody steals his money? How can I make sure he doesn't sit around his group home dying slowly of boredom and neglect. What if he has a belly ache someday and it's indicative of a more serious condition. Greg hasn't the words to describe pain.
The answer? We rely on others. Greg lives in a group home with caring providers who look out for him. When I called one evening to ask if I could take Greg out to dinner, one care provider replied, "But Martha. We cooked his favorite meal this evening. Is there another night you could take him out?" When Greg ran out of lunch foods unexpectedly, they called me to ask for more. With four special men living under one roof, they didn't have the time to run that errand, but they thought I might be glad to help out, and I was. I'm happy they called. My husband is so livid that someone stole Greg's new Alaskan souvenir hat that he warned me he's going to sit outside Greg's job site and watch for it! He, too has watched his brain cells disappear. All logic is gone. All sanity, blown to smithereens by the daily decisions necessary to survive the autistic household.
We have lost our minds with worry. Lost our minds with grief over the years. Lost our minds like a child loses pennies out of a ripped pocket, a child who is heading to the penny candy store to get a treat and who gets nothing instead.
We laugh about it because it's ridiculous to lament the lost cells. Brain death. it doesn't always happen at the end of one's life.