The Missing Piece

The puzzle piece became a symbol of Autism in the sixties. It represented the puzzling nature of the disorder. Autism Speaks used it too, but they were criticized for pushing for a cure to Autism, rather than acceptance. I am using it today as a symbol for my family's dynamic, having an Autistic family member in residential care.

This week, I had the opportunity to spend time with three of my grown sons, and two grown daughters, as well as my grandchildren. We had lunch, and then hung out at a mall they all frequented as kids. We went to an indoor amusement center together. My two youngest kids went to get frozen yogurt, while the rest of us were waiting near the door. I heard someone yell, and turned to see a young man surrounded by three or four adults who appeared to be family. He threw himself down, and they all tried to keep his head from hitting the ground. Eventually they had to carry him out. My kids and I all held a collective breath. It was so familiar. I said, "he probably has Autism," and my oldest daughter said, "he probably doesn't want to leave." We talked about how strong my absent son is, especially when he doesn't want to do something. Sadness lingered over me for a long while on this otherwise great day.

My Autistic son's name is Ben. He is 33 years old and has lived in residential care since he was 12, Ben was diagnosed with Autism at 3. Very soon after I placed his name on a waiting list for residential care in the state of Maryland. He did not begin to really talk until he was about 5, and still mostly speaks only things he needs or wants. Occasionally he says "I love you," which warms my heart.

We moved to Florida when he was about to go into fifth grade. Florida schools were not prepared for him. By middle school, the school would often call for me to pick him up because they couldn't handle him. He became aggressive to classmates, and at home. I was pregnant with my youngest daughter, and afraid he might accidentally hurt her when she was born. I had also recently become a single parent. I was desperate for help. He was able to get into residential in six months.

The first year was awful. His new school often reported bruises seemingly coming from his group home. My son was unable to communicate if someone had hurt him. I wanted to bring him home, but I knew I could not manage him there alone. The second year things improved. A new company took over. My son learned to use the toilet, he stopped running off so much. The best thing being, no reports of possible abuse.

Visiting him when he was younger was so hard. He wanted to go with me and his siblings when we left. Sometimes I brought him home for a visit. When he was 18, I moved back to Maryland. I was a single mom with four kids and I needed support. My oldest daughter was in college then. She stayed for the in state tuition. The rest of us moved, with me hoping to move Ben to care in Maryland. That turned out to be impossible because of DDA rules.

So I visit Florida as often as possible to see him, and my oldest daughter and grandkids. It is difficult being far away from him, yet I feel he is getting better care than he would here. That is his home.

But on occasions where he can't be there, I am haunted by his absence. He is the missing piece.