As you know from an earlier post, Artistry's Beauty Begins with Heart program is referenced in a Redbook feature about autism as that program helps raise funds that support Easter Seal programs that benefit autistic children and adults. The feature includes the stories of several mothers of autistic children and their different perspectives, ranging from fear and confusion to acceptance of how their children are different. These stories hit home for me as my brother, Bob, is autistic.
Bob started speaking clear words and short sentences when he about a year old, sparking my parents to believe he was a bit of a genius. He abruptly stopped speaking and interacting with them at about 15 months, shortly after I was born. He has spoken few words since. This was the early 60s, when the diagosis and treatment of autism was in its infancy.
There was much heartache for my parents, as they traveled near and far to find an answer to what was wrong with their son who ceased to speak, who wouldn't maintain eye contact, who rocked incessantly and would toss and turn all night. They went to the Mayo Clinic, to most of the Chicago hospitals, to Indianapolis, to any referral they could get. They got a staggering array of diagnoses, from deafness, to mental retardation, to blindness, to the absolute worst…that my brother was the way he was because he had a cruel and unloving mother. That one was not only almost criminally negligent, it also didn't explain why my younger brother and I were normal, happy toddlers. I wish this was an exception but many parents in that era were "blamed" for their children's disability.
Bob was about seven when the right label was pinned to him — autistic. We knew little then and it would be a long time before we knew more. There were disruptions big and small to our little lives. Bob liked to tear paper and shake it in his hand, creating a gray blur. The kind of paper didn't matter…newspapers, bills, library books. I think my parents replaced much of the Garyton Elementary School library over the course of our time there. And then there was wrapping paper. We were the only family in the neighborhood where on Christmas morning, the kids could get up before the parents and unwrap their gifts – that is we could after several Christmases when Bob woke up first and unwrapped everyone's presents. After that, we were on our own. Until we realized there was no Santa, anyway, then our presents could be hidden away and we'd go to a closet rather than the Christmas tree.
Our family life was different than most, but to us it was normal. But there were times that I wanted nothing more than a "regular brother." The worst for me was in the fourth grade, when I was struggling with math homework and had literally labored hours on some long division problems. I finished the homework and went to my room for a piece of paper to recopy the problems and my answers. When I came back my homework was in shreds. I asked my mother to give me the answers, as she knew I'd already worked them out myself. She told me that wouldn't be fair, because then she would be doing my homework for me. Which of course sent nine-year-old me into a tantrum about what wasn't fair!
There were other peculiaraties. Many autistic children and adults need rigid routines around mealtimes, sequence of events, and even placement of objects. My brother had to have the soap dish and the toothbrush holder in our bathroom exactly 3 3/4 inches apart and both cocked to a 47 degree angle. Believe me, we used to measure them to check Bob's precision. If anyone moved either object he seemed to be able to sense it and would immediately return to the room to put them "right" again. Even today he needs predictable patterns to his day to be happy and comfortable.
But there were joys as well. Teaching Bob how to ride a bike, a skill he enjoys to this day. Watching my younger brother go after kids who had the ignorance and audacity to tease Bob for being different (one incident in particular when my brother, then six, jumped on the back of a high schooler and basically started pummeling him.) Seeing Bob at his manual typewriter, typing out commercial jingles and taglines (one of his favorites…Winston Tastes Good Like a Cigarette Should) and laughing at each as he reread them. And because we were kids and didn't always do the right thing, letting Bob take the fall for something for which my younger brother or I were really to blame. If someone had eaten too many cookies or something got broken, well, Bob couldn't defend himself. (As you might expect, this didn't last long before my parents caught on.) But most of all, learning that inside everyone there's something special, even if it's very hard to see. And learning to stand up for those who can't defend themselves.
And we became part of a community of other families seeking answers about autism. People we never would have met otherwise and friendships and support we came to cherish.
Today Bob works at a sheltered workshop where he does various jobs like sorting objects — nuts, bolts, different sizes and types of things — for different companies. It provides the structure and routine that he needs. He still lives at home with my mother, but his social workers are working with him on skills he'll need when someday he'll need to move to a group home or other living arrangement. My mom realizes the time will come when he'll need to move out because she'll be unable to care for him. But she's not ready to let him go, not yet.
Today early intervention and advanced therapies mean a whole different world for people with autism. While the cause or causes are still uncertain, there are remarkable programs like those offered by Easter Seal that mean a diagnosis isn't a sentence to social isolation. I wish these programs would have been around when my brother was young, but I'm grateful and proud to support Easter Seals in its mission to help other children and families affected by autism.
Go to www.easterseal.com to find out how you can help.