Last fall when I went to the Closing the Gap conference, I met a few moms who used business cards. The cards weren’t for themselves per se but shared information about their daughter’s who had Rett Syndrome. There is so much we don’t know about people with disabilities. It’s easy to make quick assumptions based on what we see. (You know what they say about assumptions, they tend to be wrong.) Cards allow for information to be shared without having to go into a 10-minute verbal dissertation. It isn’t that I feel the need to explain, but to educate. Honestly, I hate having to educate, but how else are people going to understand unless someone takes the time to share?
This morning Jess could have used such a card. We were at the check out counter at the market. She wanted M&M’s and I said no. Who eats M&M’s at 9 am? Then the cashier, bless her heart, offered to buy them for her? Yes, a kind gesture, but who does that? Jess is 23, not six? She was treating Jess “special” and not in a good way.
I find it ironic that just because someone doesn’t understand Jess that they assume she is so simple that she doesn’t understand them. No matter where someone falls in the spectrum of disabilities, no one likes being underestimated and Jess is no different. It is my belief that just because someone isn’t talking, doesn’t mean they don’t understand what you are saying. I hate it when this assumption is made.
The outside world doesn’t know what to make of Jess, much less get the whole AAC thing. It takes a bit of explaining to bring them up to speed and this isn’t a conversation I want to have with every person I meet. I do feel it is important to teach others, but I don’t like talking about Jess in front of her. Jess doesn’t care much for social banter and prefers to converse with people that she knows. She prefers to use her talker after listening to a conversation before chiming in with her talker. It must be getting old to draw attention to yourself for the wrong reasons. Constantly, I have to remind myself that the majority of the world has not seen someone use an AAC device, so we are stuck in this awkward limbo.
Yesterday when at Sam’s, Jess used her talker to order a vanilla yogurt. She was heard and didn’t have to repeat her request! Unfortunately, they were out of yogurt. Sigh… Even though this didn’t go as planned, it is a step in the right direction.
As for her cards, I’m still trying to figure out what they should say. So far, this is what I’ve come up with:
“My name is Jessie and I have Angelman Syndrome.
I use an app called Speak for Yourself on my iPad to help me talk.
Though you don’t understand me, I understand everything you say, my mother had me tested (Lol… it’s important to have a sense of humor.)”
Probably, I should include our blog address too.
After our trip to the market, we visited George. He totally gets her AAC and she loves him for it.
He doesn’t need a card. However, when it comes to people until Jess feels like conversing with others with her AAC, we probably should order a few thousand cards. This is going to be a long process.