Sometimes it’s substance, not symptom.

IMG_20150608_151518_420 So this fellow is Scottie.

We are at the reception following his grandfather’s funeral.

Yes, Scottie is wearing a Pittsburgh Steelers’ Mean Joe Greene jersey.

His mom did all the right stuff in the run-up to the funeral. She explained death in terms relevant to Scottie, mainly that grandpa would not be here to visit anymore. They are a Christian family, so Scottie has eternal reference points from which to find understanding and comfort, too.

Several days ahead of the service, she prepared him for it, explaining where it would be, what would go on, and how lots of family would get together to eat and talk about why they loved grandpa. Included in the preparation was the clear understanding that Scottie would wear his suit and tie. (Note: I’ve seen him in it and he is stylin’).

But when the day came, Scottie wasn’t into the suit. He insisted on the Mean Joe Greene jersey.

Folks familiar with special needs might start to think, “Uh huh. Sensory issues. The suit is unusual and uncomfortable and he likes his jersey material better.”

But Scottie was able to articulate that the jersey was important in his relationship with his grandfather. Grandpa was from the Pittsburgh area, and Scottie used to wear the jersey to grandpa’s and root for the Steelers with him.

The jersey was Scottie’s sign of love and respect, in the same way that most of the rest of us might wear a suit or a formal dress to a funeral.

When our son was a little guy, he used to come in our room and yell “t shirt!” It took us a while to figure out that he wasn’t insisting on what he wanted to wear, but was telling me to put on a t shirt. He knew that if I was in a t shirt, I wasn’t going to work and could be home with him. It was an expression of affection.

Some of the choices made (OK, demanded) by people who live with autism and other special needs have an important, well conceived meaning. They’re not all symptoms of sensory issues or other things that need diagnosis. They’re efforts to touch our hearts, if the pathways of our very different minds can meet.

One thought on “Sometimes it’s substance, not symptom.

  1. Pingback: S#*t I won’t miss | Sometimes Care Giving Stinks

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