Where We Were

AAC and presuming competence works for everyone. Everyone. My daughter right now has about 100-150 words open on her device. She consistently uses the following words independently: want, go, car, show, happy, mad, bored, feel, wet, more, eat, drink, potty, music, next, like, don’t like, cookie, help, please, play, yes, no, and ball. She has been using her device in this design for about 6 weeks.

Because of this, I know that some people will think that she is “higher” (don’t even get me started on how much I hate the terms high and low and everything in between) than their kids, and that their child is not capable of these things. I know that some of my suggestions and my story will be discounted. People will say that their child is different, or that their child has this other disability, or that their child is… And it’s true that out children are different. It’s absolutely true that they will need different things and will express themselves differently.

It’s also true that AAC can work for everyone.

When my daughter was young, before I even knew her, she was not doing much at all in her classes. She is diagnosed with cerebral palsy, apraxia, low vision (legally blind), post-traumatic stress disorder, and moderate intellectual disability. She was not yet able to sit independently. She had a few vocalizations, and the word “ball” by the time she was 5. She was using very little of this communication to interact with anyone. From everyone that I know, she spent most of her day crying or screaming. She was not playing, or laughing, or singing with the class. She was difficult to soothe or redirect. She spent a lot of time sitting in her room by herself, sitting in a wheelchair being hand-over-hand prompted for everything, and being disengaged from the world around her. She did not have the ability to cross the midline, to make a pointer finger, to isolate one button on a screen, or to even hit a screen successfully. The assumption was that she would be incapable of doing much at all, I am sure. People probably assumed that “there’s not much going on up there” or that she had little skills. People probably assumed a lot of things that would turn out to be very incorrect.

Fast forward to now, the two years that she has been with us, and she has outgrown each and every communication system that we have set-up for her within months. She can hit a button on an iPad screen easily with the proper back-lighting and color design. She is beginning to prefer her left hand, and she can hold her pointer finger on her own for 3-5 seconds. She is engaged in reading electronic non-fiction books online with me. I’m teaching her how to hit the button to turn the page. She likes to say some of the letter sounds, or talk about words that start with “bah”. (B is definitely one of her favorites). She can verbally count to 20 on her own.

I share this because we are going to talk about our journey to where we are with her AAC system, and to where she’s going. I need you to know that you can get there too, that this is an attainable success story. This is not some Lifetime movie drama that we cry about and go back to our daily routines. This is real life. Your results won’t be the same. You aren’t the same. Your child isn’t the same. Our lives aren’t the same. Your results will be remarkable, though. I can guarantee that introducing and using AAC systems will change your life. I guarantee it will grant you and your child surprises that you could never have imagined. I guarantee you it will bust down doors and break glass ceilings, whether it’s through the accumulation of one word or paragraphs of words. I guarantee you it will be worth it.

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3 thoughts on “Where We Were

  1. Hi, I loved reading your post. It’s a real inspiration, thank you. I live in the UK and have a 6-year-old non-verbal daughter. She is severely visually and hearing-impaired, with poor fine and gross motor skills, but she is incredibly visually motivated and has a great visual memory. We are using a PECS style approach, with Velcro cards, which she does engage with, but we really want to expand the vocabulary we can offer her and make it more consistent in approach, so want to start with a high tech device. Do you mind sharing what program you use with your daughter? My child can read words if not too tiny font, and enjoys doing it, but needs to hold things very close, say max 5 cm. I love the functionality of SFY but fear the icons are just too small. Do you use/ have you trialled different programmes or devices? Many thanks!

    • We have made our own system on our iPad that is based on Speak for Yourself but is on Proloquo2Go. However, it has taken hours and hours and hours of programming, so I don’t super-recommend it unless nothing else will work. I think a lot of kids can do SFY even though the buttons are tiny because they basically have their muscles memorize where the words are, sort of like adults do with typing on a keyboard. However, LAMP: Words for Life only has 84 buttons on a screen (SFY has 115) if you’re super concerned. There are no trials of LAMP: Words for Life, though, which stinks! SFY does have a trial — just two buttons are open — but you could try and see how your daughter responds to it?

  2. Pingback: Mission: Independence! | joyoutsidethebox

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