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 speaking 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.
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“My mother had me tested.” Brilliant.
I just read it this morning, almost spit up my coffee. Lol
We love Big Bang Theory. Humor is what gets us through.
Wow! I can relate to everything you said!
This made me think of my daughter who has apraxia of speech. She has a bracelet that says “I have Apraxia, a speech disorder. I sign ASL. I speak with AAC” but the engraving space is very limited on the bracelet and so I can’t explain what AAC is, or about Speak for Yourself, or mention the iPad. A card would be much better! Just makes more sense for when she is older since it can be shared more easily than getting in her personal space to see the bracelet (which she doesn’t mind now but probably will later).
I hope the acronym for AAC is someday as commonly recognnized as “ASL” is. Even if people don’t sign or know anyone who signs, chances are they’ve heard that said before. Nobody, it seems, has ever heard of AAC 🙁
I guess I’d be afraid though, that people might miss the sense of humor in “my mother had me tested”. Love the rest though!
The first time someone gave me a card like this was years ago when I worked in NYC. I don’t recall why they didn’t have speech, but their card allowed for immediate understanding. I wish I had thought of this when Jess was younger because I would have used them myself. Now that she is an adult, she can choose to give them out. For the most part, people want to understand, but are afraid to ask. This allows us all to have some dignity. As for “my mother had me tested”… Jess enjoys Big Bang Theory as much as I do. If they miss the humor, then they probably aren’t going to get Jess anyhow. (Besides, Sheldon is brilliant!) If you think about it, it’s sad that he has to say that. He is aware that they don’t get him.
I’m still working on what to have on her card. I probably could use 2nd card for the people that really irk me…from Saturday Night Live, “Jane, you ignorant…” lol
Sorry, we don’t have cable and do not watch television (feeling sheepish). I had never heard of Big Bang Theory or Sheldon. My 10 yr old son has just clued me in! Totally didn’t realize that line was a reference to a show. Not the first time I have been pop-culture clueless…my bad
lol…that’s funny 🙂 Jess has antenna TV in her bedroom. She only gets three channels one of which features old re-runs like Bewitched, The Jefferson’s and Big Bang Theory.
I guess I assumed most would understand the reference. Obviously, you don’t need to follow pop-culture to have a sense of humor! It was more directed at those that take themselves too seriously and want to define Jess as being limited.
It’s sad that I laugh at my own jokes…sigh…. 🙂