By R.J. Cooper, www.rjcooper.com
For 28 years now I’ve been creating special needs technology, software, input devices, and now accessories for iPad and apps. Over all those years, I’ve been fortunate enough to actually work, hands-on, with users & learners, students & patients, parents & teachers, clinicians and therapists.
During my first years doing Assistive Technology (AT), I found myself in contact with a special needs school in Salt Lake City, where the principal gave me my own room, a budget, and access to all 207 students from ages 5-21! All this without a Bachelor’s degree! I was able to pull any student out of their class, for any reason, at anytime. Talk about “carte blanche!” Within a short period of doing this, I had unknowingly isolated the specialty area that I now am best known for, those with “severe to profound” challenges.
There are many people, some in AT/AAC, who specialize in adaptations for youth, but not many that focus on those with the most challenging disabilities. I truly pride myself on bringing out that “learner” that is “‘in there,” but needs help coming out. When I’m asked to do my popular RoadTrips, I would estimate that at least four learners out of the eight that my host has set up for me to work with, in front of the audience, is either very cognitively or both cognivitely & physicall-challenged. This may be more extreme behaviors that come with Autistic, or it could be physically “locked in,” where the learner is almost completely unable to move anything but someone suspects that the learner is “in there.”
Several learners fall under the category “medically fragile.” This could mean that there is very little mobility, and even the parent(s) might feel that little is going on, cognitively, because of the severe physical limitation. Many times, children of this nature are too fragile to attend not only mainstream classes, even it was felt to be appropriate, but also too fragile to attend even special day environments. Hence, these children get home-schooled (well, at least that’s the intention).
By now you can see the tie in with HomeBoundResources, yes?
During my RoadTrips, I’m lucky enough for my host to convince (or offer) the parent of such a child, to have me work with their learner. Many times, I can bring something out of them that hasn’t been done before. Try a new position, use a different switch, position it diffrerently, explore a new task, communicate with the child in a new way. There are many techniques I’ve incorporated over my years.
The bottom line is that I’ve brought something ‘to the table’ that hadn’t been brought before. And I’m *very* careful not to offend anyone that *has* been working with such a child; I don’t want to appear as a “know-it-all,” or suggest something that makes the professional feel chastised or not important. Sometimes I have to tap dance around everyone’s feelings. After 28 years, I’ve gotten pretty good at pulling this off! In fact, after the session, a parent might ask, “Can you come live with us?” or the professional might say, “I’ve been saying just that for five years now. I’m so glad you said the same thing, RJ!” I’m always flattered.
In speaking with these parents and professionals, I hear the same story; they have very few resources (relating to AT & AAC), because of the severe involvment of their child. And they are soooo grateful that I ‘get’ their kid! They love that I believe in their child and want to show everyone some objective way of seeing their potential. Many times during my RoadTrips I achieve, what I call, “Oprah moments,” that is, moments when people in the audience are tearing up, the mom is crying, and their child is *doing* something! I’m very proud of these moments. And I truly believe, because I travel for AT/AAC more than just about anyone in my field, going to the smallest to largest of facilities around the country, that I’m unique, and can offer unique resources (e.g., ideas, creations, apps, techniques).
Along the line of resources, I’d like to share some of my techniques, right here, with you. I’m flattered that most of my RoadTrip attendees compliment me on *how* I work with the learners, as much as the tools that I use/create. In other words, at the end of the RoadTrip, most view me as a “resource” and not a “vendor.” They know my heart is in the right place–not just out to make a buck. So, here we go…
1) Patience — Yea, yea, you’ve heard that before. But this is of a different kind. I face this a lot during my RoadTrip sessions, where the parent wants their child, of course, to look good & perform well in front of my audience (from 30-100 people). I can’t blame them; I’m the same way with my 15 year old, able-bodied daughter at her tumbling competitions! I want her to do well. What parent doesn’t? But sometimes the parent starts responding when I’m addressing their child. Or the parent prompts the child almost instantly, instead of letting me take the lead and “hinting” (more on that below). Many times, they will make excuses for their child, such as “He’s not having a good day,” or “We’re waiting on his new wheelchair” (valid, of course!).
Of greatest importance here is the idea that allowing their child to experience something completely by themselves is worth 10 times that of being directly prompted. So, I have the parent “bite their tongue.” I tell them “Slide your chair back further, please” in a nice way. I will say, “I’ve got it from here.” Of course, because of the severity of their medically-fragile child, and the isolation they’ve felt, as well as the (probable) limited number of successful experiences, the parent feels they “know best” in all situations. But, I plead with them to let me try it my way.
So I set up a very obvious situation, using a device/switch/joystick/etc. that all in attendance agree the child *can* do, physically, after some experimentation and discussion. Then, I set up a program or app, and….I hint and wait, hint and wait.
What is a “hint?” If the task is pressing a switch I’ve positioned next to their cheek (my favorite spot for the medicall- fragile child), and they are supposed to “hit” their switch to get the music playing again, I will *not* say “Hit your switch” or “Make it go.” I will say “I’d love to hear that music again. Do you remember how to play it?” Or, “Wow! Hitting your switch makes the music play” and I will tap the side of the switch with my fingernail to make a noise on it, to help them isolate its location.
Another hint is to add a personal touch *while* the music is playing (if that is the reinforcement/consequence, which most people think is enough, but I don’t agree). I like to add “value” to the music by taking the learner’s hands (when possible) and “chair-dancing” (moving their hands to the music) with them to further illustrate that something groovy is happening! When the music stops, I stop. And, then I wait….
With some software/apps (mine, specifically), after a period of time, the program reprompts, directly with a prompt that *you* have recorded. After that, I wait…then, I hint some more. And yes, eventually, especially when I’m first introducing the task, I move them. I do this very subtly, so I can feel their movements, to see if they are helping me. I don’t want it to be *all* me. This is something that requires practice on your part, to help as much as necessary, but as little as possible!
Fathers are usually the worst culprits of not waiting; they say “C’mon, you know what to do,” in a bullish tone, or something like that. And, I try to have them say, out loud “He (their child) is trying as hard as he can!” together with me. But everyone is guilty. So, please wait! Then wait some more
2) Non-Verbal Cueing — With many children that fall on the spectrum of Autism, Asperger’s, etc., they feel the need to constantly be grabbing or touching things, including computer/ipad devices within their reach. They do not respond to traditional correction. That is, just telling them not to do it doesn’t really accomplish anything. When they do get their hands on something, you may find yourself in a tug of war over it. In other words, the technology itself, rather than its content, becomes the “manipulative.” Not good. Once you’ve entered this battle, you’ve already lost it. For this reason, I developed a technique using a rolling chair. Over the years, this fixes the problem almost instantly, and almost every time! It’s so easy (read on for how this applies to the medically-fragile child).
I require two rolling chairs at my RoadTrips, one for me, and one for the ambulatory learner. Why, do you ask, do you require one for the learner, RJ? It turns out that if the learner is far enough away from the technology, they won’t even attempt to interact with it. Roll the chair forward, and they, intuitively, know it’s time to touch/do something. So easy! It requires some practice to roll the chair, with them in it, up and back at the right times; it’s almost like a dance. Bottom line, it works like a charm. The chair becomes a non-verbal cueing device! Yes, there are some instances where the learner will get up out of the chair and walk over to the technology, but it’s not often! And yes, there are other times that the learner will get up and walk around, but this only happens when I roll the chair back for any length of time. If the technology task/activity is engaging enough (a *key* element to success), and there is other stimulation in the enviroment (and this includes *you* because if you make a fuss about returning to the chair, *you* have now becoming stimulating!), they will return to the chair.
If they’re “grabby,” then as soon as they touch their device (touchscreen, in most of these cases), I roll them back before they can grab something.
Now, onto the medically-fragile child. I started doing this with those in wheelchairs that didn’t move much, or with my movable monitor mount, and it worked to give them a further hint as to when to expect to to do something, and when to sit back and observe/enjoy a consequence. This gives the child a proprioceptive feeling at the times I want them to take notice. In other words, the computer action, or need for interaction, is accompanied by a real movement they can feel. It *does* make a difference. Rather than just have them be in one place, a dynamic real-life movement takes place at key times.
Anything you can do, *without giving explicit instruction*, that helps them understand when and how to interact by themselves, is 10x better than directing them.
That’s it for this time. Hope this helps you!
RJ Cooper can make just about any technology function to meet the abilities of someone with special needs. With a background in electrical engineering and a bachelor’s degree in Developmental Psychology, RJ brings a well-rounded knowledge-base to each project challenge he encounters.