As I drove Aaron to his day group one day this week, we passed a big traffic accident in the other lanes of the highway we routinely travel. We took our normal exit, only to discover that the exit we usually take when getting back on the highway was closed due to the accident. I told Aaron that I would need to go another way home after I dropped him off. This concerned him but I assured him that it was no big deal.
All was clear on the highway and the exits when I picked Aaron up later that afternoon.
“Mom?” he immediately asked when he got in the van, “can we go up the road we’re normal with?”
It took me a second, but then I understood what he meant. He was very happy as I turned into our exit that we could go up the road that we are normal with.
Aaron was completely unaware that he had just perfectly described his life with autism. And he had especially given the perfect picture of why our recent trip to Texas was full of our usual Aaron ups and downs.
Aaron wants to stay on the road that he is normal with. Any variation of that road will most certainly be full of potholes and unexpected detours.
The road that Aaron is normal with is only at home. It is only his room…his bed…his computer…his games…his food…his bathroom…his day group…his routine.
His desire for his normal is why he wants to take as much of his normal with him as possible when he travels with us. He takes more books than he will read in three years. More music than he will listen to in the week that we are gone. Way more food than he will eat and way more games than he will play.
And he takes way more out of all of us than we feel that we can give.
Patience and understanding are our goal on every trip, but they are often stretched very thin. If only my scales would show how thinly I am stretched! 😊
One evening we were setting the table for supper at our daughter’s house. I gave Aaron one fork just like all of us were using. But look at his place at the table after he ran back to the kitchen and corrected my silly mistake.
Always, always, Aaron will take two forks and two spoons and two knives. He doesn’t use them but what we need to understand is that for some reason he does NEED them.
Again, here is a perfect description of living with autism – this time in picture form.
You can see Andrea’s one fork beside Aaron’s multiple pieces of silverware.
Aaron needs more. He can’t even tell you why he does but he indeed must have more.
He must have more than the rest of us in so many areas of his life. Sometimes it’s hard to remember that. It’s hard to be patient with him and understanding of a need that we don’t have. A need that seems so unreasonable.
But the complexities of autism are not to be trifled with.
There are many ways that we as parents can guide and train Aaron, and we have.
But we must be wise in choosing our battles. Some battles we will always lose, and such a loss is not worth it.
The road that Aaron is normal with is also a road that Gary and I travel right alongside him.
I guess you could say that over the years we have a new normal…one we could never have dreamed of having.
Some days the trip is long, and we feel near empty.
Then we see a view like this, and our hearts are full again.
He Said What?! 