Note about the author: Ellen is the mom of two adult sons (including Danny) who are two years apart. She was the “mom on call” for Danny, who was diagnosed with Asperger's at age 12, and his older brother, who was the one with the more “normal” culture. She is thankful that she has had a very patient, and much more playful husband, to share in her parenting responsibilities.
I really hated summertime! Unless I could get frequent breaks, I disliked being with my Asperger son, Danny, playing Pokemon with him all day, and listening to endless monologues about his obsessions.
While I did my best to pretend to enjoy every single moment of parenting, I can now admit that I did not enjoy summertime. Here are some things I would have done differently:
1) Don't stress about the lack of peer-friends. Up until about age eight, his peers didn't seem to mind Danny's quirks. After that, the kids his age began to notice that Danny was different and didn't want to be with him. (I used to cry when he was excluded from birthday parties.) They didn't understand him when he spoke obsessively like a little engineer explaining in much too much detail about whatever topic interested him. They didn't like that Danny did not abide by the social norm of respecting their physical space, and they thought it was strange that he would freak-out when someone touched him playfully. So, instead of complaining about the lack of peer-friends, or forcing Danny to be in stressful situations trying to fit in, I would have removed that stress by finding people of different ages to be with him.
I would have found a few patient adults or older teens to be Danny's buddies and spend time with him. I would have contacted the local high school and asked for some mature students who need volunteer time, connected with the community “big brother” program, or asked friends and relatives to help out. A few hours of their time would have provided Danny some social time, and allowed me to have more breaks.
2) Let him be in control by giving him choices. I often was the “drill sergeant” mom and told Danny what to do. But, when I gave him two choices that I was willing to live with, he felt in control and we were both happier. For example, “At 10:00 this morning, two hours from now, do you want to go to the park, or a walk on the beach?” Or, “We need to go grocery shopping. Do you prefer store X or store Y?”
3) Avoid Meltdown triggers. I would have avoided places that set Danny off into Defense Mode. It took me years of dragging Danny to the fish market until I finally realized he stressed every time. Likewise, how many times did I need to cook with olives before I realized the smell caused him pain? And, Kmart's florescent lights were way to bright for him. He was overly sensitive to these smells and sights, and was very uncomfortable, ultimately stressing, retreating into his own world, and melting down.
I would have also avoided people who stressed Danny out. Summer was often time to visit with friends and relatives and that unfortunately often triggered problems. Danny had a very low tolerance for certain people's voices, and others who talked too much, or as he would say, spoke “mindless chatter.” (He would sometimes accuse me of being one of those people.) Of course, there were times when he needed to be polite, but I would have changed my visit times or durations, and explained to him ahead of time that it was perfectly okay, after saying hello, to excuse himself whenever he was feeling stressed and go read a book or play gameboy in the other room. And, I would not have cared what anyone thought of this behavior!
4) Find more volunteer experiences for Danny. (This would have worked well when he was about 10 or older.) One summer, Danny got a taste of a fun volunteer job when he helped at a preschool. The children were too young to judge, and instead simply liked that Danny showed them magic tricks, made really cool shapes out of clay, and pushed them on the swing. Other opportunities existed too. There are many homes for the elderly in town and perhaps they would have enjoyed to play cards or chess with Danny. Opportunities are out there, but again, I would have narrowed the choices down and let Danny ultimately pick what he would do.
Ultimately a less-stressed Danny meant a happier mom. And, likewise, a less-stressed mom, meant a happier Danny! Oh, how I wish I would have known better!