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.
Recently (as in earlier today) I was in Detroit for a business meeting. It was an “Envisioning the Future”” summit hosted by ADD. ADD invited the public to participate in it’s strategic planning process. When asked, what should ADD do (vis a vis their strategic plan) the following advice (paraphrased) was given.
The Keys to Success:
1. Dream big. We should never let the mundane realities sidetrack our dreams. We must dream big. Aspire and inspire.
2. Take small actions. If you want to get somewhere, be somebody, do something, your actions must be small and very very focused.
3. Get a win and keep moving. Sure, celebrate your successes but then don’t stop! Build on your successes to gain momentum and this will enable you to eventually accomplish your big dream.
4. Include other people (family, peers, others) in your dream and your actions. Our success (speed of success, ease of success, order of magnitude of success) are correlated to our supports.
FYI, this was advice from successful self advocates.
Wisdom for all of us.
Have a great weekend.
A friend of mine asked me what I thought about a residential placement option he saw. He’s thinking of the future for his children with Developmental Disabilities. After a very long-winded response email, I decided “Hey I should put this to perspective to greater use.” How bout a little advice from “the other side.” Honestly, let’s put it out there. Your number one worry is “what will happen to my child with developmental disabilities after I’m gone?” And the follow-up “how can I ensure their safety.” Yeah, many of you talk about big dreams for children but really, in your guts, you think “safety.” ( Some of you, secretly are going one step further and you’re thinking “surrogate.” After all, no one can love them like you do, right? How can you find a place that will care enough?) As a sibling after 15 years I can tell you that I wonder “what if I should die before my brother?” And “how can I ensure his safety?”
From the vantage point of 16 years AD (after death). Knowing what I know now, here’s what I wish I could have told my parents. Mom, Dad, there are certain rules of nature that you simply have to acknowledge. I know it’s hard because of the implications. But they’re real, let’s talk about them.
The rules of nature
- There is no permanency. Whatever solution you find — residential, day program, employment, etc — it cannot be permanent.
- There are no guarantees. However much you plan, the unexpected will emerge.
- Walls do not protect. They hide.
- Even children with the most severe disabilities will have to cut the cord. Ultimately they will leave the nest.
- Risk exists for everyone. There is no way to eliminate all risk for your child. You have to get comfortable that there is a level of risk you must take.
- I am a sibling. Stop worrying about giving me an “obligation” or a “burden.” You have given me a brother. Family takes care of family.
- Given these rules of nature I cannot promise you that I will keep everything just the way you set it up. I’m sorry. I’ll keep it that way as long as possible but then at a certain point I am going to have to make changes. I promise to be mindful of your values and David’s needs and desires.
Given all of the above…. As parents, its expecting to much of yourself to find the “golden solution.” It’s not feasible. So, let’s go with you’re finding the best solution today. What is the most important thing to do? Develop a “circle.” Develop a multi-generational social circle surrounding your child. Ensure that you are not the only person in your child’s life who is not paid to be there.
Take it from me. It took me 15 years to understand this simple point. Inclusion isn’t about a house or a trip to the park. It is not about how many times you “get into” the neighborhood. Its not something I can write 5 goals for on an IDT plan. It simply means that an individual is not alone. That they have their own “community/ies” (friends, family, people with shared interests and goals). These people are not paid to be part of the community. To be disenfranchised? To be on the outside of communities versus on the inside? This is what makes a person invisible. Being invisible makes a person vulnerable.
Surely, as a parent, you can understand this. You’re worried about who could possibly replace you? NO ONE CAN REPLACE YOU. It will take a village of people to care as much as you care. To replace the eyes on the back of your head. The one thing you can do (do early, do often, never stop doing) is build the village. If your child grows up living within the village you build, they will always be a valued member of the community and a derivative fact is they will be less at risk, more fulfilled, and reach their full potential.
What parent wouldn’t want that? Start building now.