Self-Determination, We Have Lift Off! (thank you iPad)


My brother, David is a habitual watcher. He was always this way. As children, I would sit and play and he would sit and watch me play. He was never interested in fictitious, symbolic, or representative things. Only real people, real interactions.

Over Christmas, I introduced David to the iPad. David and I played Virtuoso piano together. To sit and play piano together, this was really something. Through tapping on the screen, having tones emit, David found a way to interact with me and I with him. And each time I think about that day I think “Forty-some years, and that was the first time we had a “back and forth” conversation.”

Once I handed David the iPad, we tried a variety of “aps” or applications. Movies, iTunes, games, piano, AAC communications. Our roles reversed. I was the observer and he, the primary doer. David engaged with the surface of the iPad easily.

Historically, there have been many barriers to using AAC devices: (Source) This includes policy, practice, knowledge, skill, and access barriers. My brother, David, was impacted by all these barriers. Throughout his school years, barriers existed suggesting that his intellectual disability precluded the need for him to have AAC. The degree of fine motor skills precluded the capability to have AAC. The cost was prohibitive for our family to trial, and forget about buying (when the policy barriers precluded it). It was these same barriers that eventually made David a prime candidate for “Facilitated Communications.” Facilitated communications was considered a breakthrough method of communications for individuals who did not speak verbally. I was living out of the area at the time and I remember when they called me and put David on the phone and “he” said “I love you.” I was at work and cried like a baby. And then I thought, a) hey I have 8 other siblings and I know “us” — the first thing all of us do is tell a joke–we do not tell emotions! and b) who’s pressing the buttons?

So back to the iPad. Who’s pressing the buttons? No keyboards, no pens, no pointers, only a beautiful surface area. No requirements for fine motor skills. Can’t tap? Slide! Can’t use a single finger? Use your hand and swipe! ). Graphics? Traditional symbolic pictures sure, if you want them. But real pictures or even videos can be used instead! Audio? Synthesized voice? Sure, if you want it. But how ’bout real voice? Mom’s who record for their sons — you can “bend the pitch” so that mom’s voice now sounds like a male voice — you can record and yet give your child their own voice. It has an easy touch, crystal clear visuals, and terrific audio. And David can hold it in his own hands. It is light, portable. He can hold it. It can rest on the table. It can be his. For the first time AAC can be small enough and customizable enough to be “personal.” And the myriad of aps means that this device can be truly an external extension of David’s unique self. And still “standard” enough for others to understand and interact with him without a PhD!

I admit that I’m a steadfast zealot. Why?

Yesterday, my sister Mary and I had an iPad meeting with David’s provider. 8 people + David, Mary, and I. There were several people in the room who had not been present for the previous discussion and so, although David was taking a break out of the room, we decided to review the background for the meeting. I explained that Mary and I had thoughtfully loaded applications on the iPad that were specific to David, his potential likes (we all get bored or change our minds), and also specific to the way he uses his hands. For example, every ap had a very large surface area and therefore did not require finger pointing precision. Full-hand gestures would work equally well. If David were to place his hand on the screen, a response would happen. And the screen would also pick up micro-gestures: small, almost invisible movements in David’s hands. These micro-gestures might come from small twitches or they may also be David’s reaction and engagement with his environment. Also, through the applications — even non AAC aps — David could make choices about what he likes and doesn’t like (self determination!) and communicate that to you!

We sent around Koi Pond for everyone in the room to touch and feel. Touch the screen and “splash!” it is as if you traipsed your hand through the water of a pond. Around the table it went” Splish-splashing all along the way. David returned to the room just as the iPad came back around. I put the iPad in front of David and explained the koi pond. David had not seen Koi Pond before. I traipsed my fingers on the screen: splish-splash. I gently placed his hand on the screen (splash) and on top of his hand I tapped my fingers. I tapped my fingers on the screen: splish-splash. I left him and continued talking. David sat there. His hands did not appear to be moving and yet we heard quite a volley of splishing and splashing. Micro-gestures! Eyebrows raised all around the room (including me and Mary!)

Another application around the table: Pocket Drums. Thumping, bonging, Binging all around the room. Back to David. David had not seen Pocket Drums before. I tap the screen: Thump, Thump, Bing!. I place his hand on the screen: Thimp-thump. I tap the screen again: Thump, Thump, Bing! and leave him alone. We continue talking. Micro-gestures. Thump…. Thump…. Thump…. David smiles. He lifted his left pointer finger high in the air and dropped it. THUMP! He smiled. Everyone stops talking and watches David. He does it again repeatedly. THUMP THUMP THUMP. He laughs. He starts tapping all his fingers — individually! Thump, Thimp, Bing, Bong! David is laughing out loud and brings his other hand over and is playing drums. He is laughing, smiling, shaking his head — David LOVES it. And the room bursts out in joyous laughter.

We all calm down and keep talking. I pull out virtuoso piano. It can play a duet — a keyboard on each side of the screen. Something David and I had enjoyed doing before. I put it down in front of David. No one is talking. Everyone is watching. I tap C, I put Davids hand on the keyboard. F. C chord badly played by Katy. David hands move. Notes play and then he is agitated. He is shaking his head. Then his body. Then he starts yelling. David is one unhappy unhappy man! “David,” I say, “this is simple, you don’t like it so we can just push it away.” I push it away. He lifts his hands off and looks at it. Gives it a little push. He looks up at me, smiles, and relaxes. Everyone around the room has an “Oh” face.

That’s what I’m TALKING about: COMMUNICATIONS. Self-Determination, we have lift off!

Buy it! Buy TWO. Get on board the iPad train buy one for your child, family member AND one for a friend. It will be worth every penny you saved up. Get involved, get your school involved, get your provider involved. And, let’s get Apple involved!!!

Yours in community,
Kate

7 responses

  1. Wait!! don’t buy one today! The iPad 2 is coming out soon! wait for it!!

    I’m in agreement. The iPad is awesome for communication. There are also many apps for learning!

    1. I say buy BOTH! It will take months for the provider to go through training. To figure out policies. To figure out security. And they needed to have an iPad in hand to begin to sort out these things. When the new one with the camera comes out, we will get that one for David. In his ISP where “community skills” are listed — things like using the telephone and sending email? We have written in “using video conferencing through Skype or other internet-based video conferencing”. Our family will then be able to see David and talk to David even though everyone lives far away! Also instead of mail, we wrote in “email and facebook” so that, with support, David will be able to provide status updates to the family in the form of photos etc. I tell you the new technology and social networking really help us build that circle with David and it will no longer be limited to physical proximity. Sibs and other family who live in different states will be able to connect!!! I hear choirs singing!!!

      1. IPad 2 is on the market. So iPad 1 can be bought at a 100$ discount and even more if you buy one that’s refurbished!

  2. Thanks for writing about this, Kate. My brother Ben does not use computers or e-mail. He thinks that people who use computers don’t spend as much time interacting face-to-face, which is probably true in my mother’s case.

    I am not speaking to my mother currently (long story). This means that I need to find a way of communicating with Ben without having our mom be the go-between, as she usually sets up the video Skype for Ben on his end. I heard that the iPad 2 has an app where the user can do a video chat easily. Maybe this is our solution?

    1. I’m planning on upgrading to iPad2’s for exactly that purpose. FaceTime is Apples video conferencing tool. I would love to be able to engage with my brother on a more regular basis. So would the rest of my family. The issue right now is that FaceTime and skype (another computer-based videoconferencing capability) are incompatible. Hopefully this will soon be resolved with iPad2 going on the market.

      I agree with your brother, Ben, that face to face is good. But it’s hard if you don’t live close. Many of my brothers and sisters are not in the neighborhood. I set up a facebook account for David, too, so we can at least exchange photos. Then people on the family can see photos of things/events David is participating in. The new technologies are bringing our family closer together around David — including nieces and nephews!

      Drop a line with what you decide!

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