Assistive Technology

By Joe Pinkelman

Our daughter Maia is mute, but can hear perfectly well.  She is also mentally delayed, so to add to the fact that she can’t talk, her response time is slow.  Her first one-on-one aide decided that she was going to teach her sign language.  It was remarkably successful and to this day that is her preferred method of communication.  However, because of her muscle weakness, she can’t finger spell and some of the hand gestures can’t be fully executed.  It’s an abbreviated signing.

That’s where assistive technology entered the picture.  We started off with the simple two square and four square boxes, which were about the size of the old etch and sketch tablets.  It had simple commands of “yes”, “no”, “go”, and “stop.”  It is important to mention that we were also trying to develop her ability to speak and annunciate sound.  So for me it was very difficult because I was trying to juggle learning sign language (we ended up taking a couple classes at the local junior college), asking Maia to push computer buttons so that the automated computer voice would say a word, and then having her sound out, “yes”, “no”, “mom”, and “dad.”

After several years of effort it is apparent she won’t be able to talk.  She can somewhat sound out “mama” and “papa” and can say “bye.”  All of those words have hard consonant sounds so it is easier for her.  In her signing capacity, she has a signing vocabulary of over 500 words.

Furthering her ability to use assistive speech technology, she currently uses a Dynavox V.  It’s the size of a netbook, but about two inches thick.  It has an array of picture icons that Maia can navigate and a computer voice speaks the word.  It is touch activated.   She can also string sentences together.  For example, she can say “I want a banana.”  If she pushes on a tab of fruit, like Windows, it opens up another window of fruits and she can select the fruit she wants.

It is amazing that Maia can navigate through four different levels of Windows.  All of the staff at her school as well as new aides are constantly amazed because they never thought a mentally delayed girl could be so smart.

The main problem is that nobody gives her the time to navigate the Dynavox, nor waits for a reply when they ask her how she is doing.  It literally takes 45 seconds to a minute to wait for her response.  If a person were speaking to Stephen Hawking, that person would patiently wait because he or she knows Hawking is a brilliant physicist.  With regard to Maia, the person doesn’t think she is engaged and they misinterpret her processing of the question, deciding how to navigate the Dynavox and by the time she has pushed a button, the person is gone.   Unless I can ask the person to wait for a response, I’m not sure what to do.  It’s not the fault of the assistive technology device.  In fact, it’s amazing.  The problem is that we must ask, in this quick response, Twitter, text, voice activation world we live in, for somebody to slow down, wait, and listen to her talk.

This entry was posted in CMD Perspectives. Bookmark the permalink. Both comments and trackbacks are currently closed.
  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

  • Register Now!