Tale of Two Brothers: Sibs of People with Disabilities
Tommy and Aaron hiking in Smokies
It was the best of times and the worst of times. (Sorry, couldn’t resist.)
All boys and girls grow up into adults. If the statistics are correct that one in 86 children now have the label of autism–that’s a lot of brothers and sisters.
The cute little brothers on the hiking trail grow into … what?
Can the brothers and sisters of people with disabilities, including autism, stay close and involved in their sibling’s life? How does it change over time? Can anyone have a “normal” life?
When we first suspected something was wrong with Aaron we went to the neurologist and began tests. We told him we were considering having a second child and he said, “Great, Aaron would love to have a brother or sister.” The tests took 6 months and fortunately for us, we were already pregnant when the neurologist told us Aaron would, “always be in special schools.” (which was his way of saying Aaron had cerebral palsy and was “severely retarded”–though at the time we didn’t know what he meant.) Tommy is 18 months younger than Aaron who later added autism to his list of neurological labels.
I can’t imagine our lives without Tommy. I think God knew our family needed him to help us get through the rough spots. He is a very thoughtful quiet guy, who is one of the most caring people on the planet. He is also a terrific problem solver and continues to be such a source of joy and support to Aaron and all of us.
Aaron is now 49 and Tommy is now 47, but in this picture (Aaron 10 yrs) and Tommy (8 yrs) pose on one of the hiking trails in the Great Smoky Mountains. Sometimes our whole family would go on the hikes, sometimes Tommy and his dad, Tom, would hike and spend a couple of nights on the trail while Aaron and I stayed in the base camp.
Thankfully Aaron let me use him for an excuse so I wouldn’t have to hike 10 miles up the mountain, sleep on the ground worrying about bears, and shovel the … you know. Sometimes it was just Aaron and me roughing it in the popup camper. Sometimes my dad or sister Janet joined us at basecamp. It was always a great family adventure (click here).
Tommy has always been involved in Aaron’s life. Until he went to college, they went to school together and participated in some extracurricular activities together. He certainly had his own friends and activities, but Aaron was involved in his life whether it was cheering at his baseball games, watching him play video games, or building stereo speakers….
In the last several years Tommy’s job, as a radio frequency engineer, has taken him to South Carolina, North Carolina, Pennsylvania, Virginia, and D.C. (Did I mention he was in charge of setting up the cell phone operations for NASCAR and the Super Bowl?) 🙂
He recently moved his family back to Cincinnati and is now living between Aaron’s house and our house so we get to see his family almost every week.
Because Tommy has grown up with Aaron, he knows what Aaron likes and dislikes–sometimes even better than Mom.
Aaron pushing Isabella in the stroller
Tommy invited us all to his house yesterday and his wife Ana fixed an amazing dinner. Isabella (1 year old) was climbing on Aaron and making him laugh.
Dignity of Risk
Tommy is now an adult who understands the “dignity of risk” (click here) and lets Aaron share his life with his family. Notice that while Aaron is pushing Isabella in the stroller, Tommy is hiding in the bushes making sure everything is okay.
Aaron can independently push Isabella and talk to her (why she was looking at him). He is using his skills. But Tommy is close by. Isabella enjoys her ride with Uncle Aaron and is safe.
I could not have planned for this special moment. I did not have a lesson plan or task analysis. Tommy just figured it out.
What a great brother.
LIFE IS GOOD!
Another Quote:
I remember reading an article where one brother of a person with a severe disability said, “Growing up was like being an only child, with a brother.” When I asked Tommy about this, he was very thoughtful and just nodded.