While on the road for the Envisioning the Future Summits, I learned quite a bit about AAC (Augmentative and Alternative Communications). These are “devices” that sit like a tray in front of an individual. The individual can use an eye gaze, some sort of typing, word selection, etc to pick and choose their way through a vocabulary to communicate with to other individuals. Sometimes the process of communicating with these alternative forms of communication can be quite cumbersome especially if the recipient of the communications a) doesn’t understand how the process works or b) is in a real hurry. I met one woman and in trying to carry on a conversation with her, her assistant said: “Shorthand is to ask yes/no questions. She can move her eyes to signal yes/no.” The woman and I had quite a detailed conversation using only yes/no and avoided the AAC all together. I’m not saying avoiding the AAC was the right way to go. But I am saying that learning both options was an important process for me. And I realized just how much we can talk just with yes/no responses.
Flash forward to this week. I spent a couple days with my brother David. David is not verbal. Yes, he communicates. He vocalizes. He lets you know when he is unhappy. He laughs when he is happy. But, I wondered, instead of happy or unhappy could it be possible that David could answer YES or NO questions? David is unable to use flash cards. Those flat pictures or words have no meaning to him. But, David does respond to verbal requests. I wondered…
I never tested a DynaVox or some such with David. These devices cost between $5000 and $10000. Today I realized I have an iPad! I heard several people at these summits mention that there is software available for the iPad. I went on line and queried AAC for iPad and came up with several options:
- Proloquo2go. Costs $189.00. Thats a good price compared to $5000.00.
- TaptoTalk. $99.00.
- MyTalkTools. Cost $34.99. Yes, that’s right, under $35.
- YesNo. Cost $1.99. Yes, you got it under $2.00! Two options: yes and no. Man/woman/boy/girl voices. And the option to program in other pairs of words and record the text!
Here was my big moment today. I simplified the MyTalk so that it only showed 2 options on the screen. Yes and No. I mean, lets just start with the basics.
“David, would you like something to drink?” (I hit yes, I hit no. I did this repeatedly and then showed David how to do it. Repeatedly.) “David, would you like something to drink?” David extended a finger and pointed. I showed him he had to tap the screen. Tap, went David. “Yes.” I hurriedly got up and got him something to drink. No, I didn’t sit and offer 25 options. Yes, he said, and I wanted to get something in his hand immediately.
I tried this for an hour. Various questions. Yes/No responses. David sometimes answered yes, sometimes no. It was getting late. I cleaned up all the glasses and other things I brought him from the yes/no questions. Time for one last question: “David, its time to go home. Do you want to go home?” He looked up at me and shook his head. He reached up to the iPad and hit “No.” Was this a fluke? I moved the iPad so this wasn’t a ouiji answer, guided by me. “David, do you want to go home?” He looked up at me, reached out with a finger and hit the iPad. Tap. Tap. Tap. Tap. “no, no, no, no.” Forget about going home, iPad aside, we went to the living room and sat on the couch. I had nothing to say.
My brother is 48. I am 46. This is the first time we had a conversation of any sort. It was a really big day. Thanks to the iPad.
I have to figure out how to buy one for him a) without worrying about theft and b) teaching staff to use it with him. Perhaps this is our 2011 goal.
Now I wonder… how do we get these devices in the hands of every school aged child with developmental disabilities that could benefit? Is there a donation program? I found one for children with autism: HollyRod Foundation. I saw some individual classrooms requesting them in DonorsChoose.org. But, come on, this is perfect for Best Buddies, Special Olympics, or the Arc to pick up. If you hear of anything like this, let me know.
I’m obviously not the first to report this news. All I can say is when it happens to you, you’re the one who becomes speechless. Other articles can be found here.
Anther group I’m aware of that’s collecting old iPods/iPhones/iPads for redistribution to any needy kid with speech impairments in the USA is “Different Iz Good” – here’s their website: http://differentizgood.org/gift-a-voice/. I’m not associated with them – I just write about them 🙂
I’m so very very glad you got to have a conversation with your brother – that sounds like an incredibly amazing experience. I hope you can figure out something more permanent that he can use with others as well as you. And I’m glad you found ATMac’s article useful.
Hi Ricky, thanks so much for your comment and also your suggestion for donating iPads, iPhones, etc! Kate
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Hi Kate, I have been following your blog since I came across your piece on siblings. I love it! I am a sibling too. I am 42 and my brother is 31. He moved in with me when he was only 13. He and David sound very similar which makes me relate to your stories even more.
I have always wanted to be a Kennedy Fellow but I couldn’t leave my brother to live in DC and there was no way I could move him to DC for just a short period of time so I have never applied.
I am glad that you two were able to converse with David! Mac and I have a special relationship and we have been having similar conversations for years.
Mac now lives in a nursing home. Not because he cannot live in the community but because our state will not support him to live in the community. It is really sad. He never wants to go home.
I will keep following your posts. You keep the fight.
Missy, your brother, 31, lives in a nursing home? I’m really sorry to hear this. As my brothers walking be ame more fragile, he was offered a new home — one story, accessible, wi housemates who were 30 years older than him! Luckily we were able to wait and now he lives in a great, and accessible, house. Thank you for your comment on my post.
Ps did you check out the sibling leadership network?
Hi again! yes, I know of the Sibling Leadership Network. It is awesome. Ann Kaiser, who helped start the group, was my advisor at Vanderbilt. Keep your fingers crossed that Mac moves out soon. He was approved for Money Follows the Person funding. Also, in your spare time, check out Joe Shapiro’s stories on Katie Beckett funding and youth in nursing homes. THANKS!!!
Thanks for the references.one of the stats that I love from Shapiro’s articles is that the expected count on kids who required this level of service was a couple hundred. How wrong that estimate was. Like any other count, it required self identification. Why bother when there’re was nothing to get? Good luck with “money follows the person” — I hope you all find some place that allows your brother to be a valued citizen and a contributing member of the community into which he moves!