When I was rooting through my desk, I stumbled upon a few pieces of Jess’s art work. I don’t know why I kept them. Even though they had her name, it wasn’t her work. It’s bittersweet to look at them now. I’ve always wondered how the aides felt about my hanging their art work on my fridge? Did it make them feel like they were doing their job by showing her coloring within the lines? Did they think I would not realize the only part Jess had was sitting with them? Did they think they were sparing me by not sending home a paper covered in scribble?
As if this weren’t bad enough, there was a time I would speak for Jess. When people asked her questions, I felt awkward in the silence and would answer for her. Maybe I was trying to cover up that she wasn’t talking, or maybe it was because I didn’t want to hear the stream of curious, never ending questions. At the time, I felt shamed that I was speaking for her. I knew this was wrong, but I was afraid that others would see her as less. Once people see short comings, the next stage is dismissal.
I’m afraid my speaking for Jess was more damaging than the aides completing her art. I cringe at the thought if my husband were to speak for me. Once we start speaking for people, it can lead to talking about them in front of them. I challenge you go out for the day, wait, make it an hour, allowing someone speak for you. Maybe go clothes shopping, or to a restaurant and experience how it feels to have someone make your decisions? Wait, if husband takes me to a nice restaurant, I will let him order. I always like what he chooses better, but that is not the point I’m trying to make.
In our case, the problem at the time was, Jess didn’t have a reliable way to communicate and this is why I spoke for her. This lead to making her choices. Sure, we learned to speak Jessie, but this was foreign to everyone outside of our inner circle. All this did was keep her world small.
The other day, there was a conversation among parents asking if they spoke for their child. They all did. I’m guilty of this and I understand why, but it doesn’t have to be this way. As good as I thought I was for meeting Jess’s basic needs based on her gestures, I was missing the mark. Jess had so much more to say.
My intention is not to disrespect the families that speak for their child, but to have them ask “what if” my child had their own voice? If you are reading your child’s gestures to meet their needs, then why not go one step further and presume that they have something to say? If you are waiting for school to tell you when your child is ready for AAC, be prepared to wait. Not all schools, not all SLP’s are as forward thinking. Times are a changing, but there’s still plenty of old school mentality. If you feel your child is too old, think again. Jess didn’t find the right AAC till she was 21.
When Jess was younger, we used low tech AAC’s and they were not very effective for her. At the age of five she was deemed not a candidate for AAC device, but when re-evaluated a couple of years later, the assessment came back different. Over the years, we’ve used at least a half dozen AAC approaches, but nothing met her specific needs. The point is, we kissed a lot of frogs before finding her Prince. You know, when you meet the right one, they help you be the best person you can be, then you can find happily ever after.
After all this time, I’ve learned that I may be my daughter’s advocate, but I am not her voice, she has one of her own. October is AAC awareness month. Share the love!
PS- I much prefer the Art that Jess made herself.
Jess’s first piece of art is now on permanent display at the Plainsboro H.S.
Our favorite piece is the painting she made for Father’s Day of a guitar.
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