Having a Child with Down Syndrome, Part CXV: Steps Towards Self-Advocacy

It’s been winter break and Alice has been ill-behaved. To be quite honest, both Alice and E have been getting on each other’s nerves and E has clamped down hard and Alice has been giving her the metaphorical finger. It’s been rough for both, especially since I didn’t have a whole lot of time off and couldn’t run interference so much. During the week, I took Stuart to lunch one day and decided that today should be Alice’s day.

We went to the Roost in Northampton, since this is different from the usual places that Alice goes and I thought they had decent gluten free options. It’s OK – they did have some things that I knew that Alice would eat. Alice made her decision and we went to the counter.

Alice stepped up and said, “I have a gluten allergy.”

It was clear as day to me, but not to the woman behind the counter.

“Try again, Alice, I don’t think she understood.”

“I have a gluten allergy and I want grilled cheese.”

“OK, grilled cheese.”

“Alice, I don’t think she understood, please try again.”

“I have a gluten allergy and I want grilled cheese.”

“Right, grilled cheese.”

“One more time. Slow and smooth.”

“I. Have. A. Gluten. Allergy.”

It was clear that she wasn’t being understood, so I figured 4 times was enough and I intervened.

The important thing here is that Alice, unprompted, spoke up for herself and her needs when ordering food, which is a big deal. I’m very proud of her for doing that. In spite of the other behavioral issues we’ve seen, this is a big practical win. Secondary was the inability to be understood. I think that we need to fix this in two ways. The first is to see if we can change what she says to “I have a gluten allergy. Do you understand?” The the second is to have her say that up to three times and then give her a card to get out that has those words on it. In theory, she could lead with the card, but that’s not how most people communicate, and I discovered during a brief period when I was unable to speak because of dental surgery that many people react to being handed a card with a clear reason explaining what’s going on by treating you as if you’re deaf, so I’d like the card to be a fallback and not a primary approach.

We’ll see.

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