One year ago my 22 year old friend L. could communicate with a smile and a repetitive whole arm pump when she was happy. At least that's what we thought she meant. Very limited eye contact, no speech and no choice-making. She would consistently reach for a cup of water and would hit a rocking plate switch on the right side to ask for the water. No reaching to get anything else. And she would sleep. A lot.
We were told she was "Profoundly Mentally Handicapped" which meant, "Don't even try. There's no chance. She's an adult. She can't learn. Seriously???? You're getting her a high tech communication device???!!?!? She's not ready."
Today L. came in my office. She independently said, "Hi!" "How are you?" and answered me saying "I'm fine" using her communication device. She reached to touch me with a huge smile. Still no eye contact. After we waited a LONG time she said, "I'm ready" and we headed off to my therapy room. She reached for several items on my table she wanted. She grinned and gave me that happy arm bounce many more times. With a lot of encouragement she told us "I like it!" as she saw her new pages on her device. These are the pages that allow L. to begin to learn to independently move from page to page on her device. We just added these today because she has progressed beyond having her partners pick all of her pages for her.
Dad walked in unexpectedly and she couldn't quite get that "Hi" out by herself but, with a little encouragement followed by a long wait, she continued, by herself, to say "How are you?" and to answer again, "I'm fine." I think we should have had, "I am EXCITED" on her device because she was engaged, expectant and interacting!
On the way out we paused for another long wait time and then got to hear L. say, "I'm ready." "Let's get going!" A quick "bye" from me and L. gave me super fast "see you later!" Smiles all around, for L., me, Mom and Dad.
These days L. has a LOT more people talking with her. More people are interacting with her and she is awake a lot more. She is coming to expect people to talk to her and people are expecting her to respond. Everyone agrees that, of course, we need to ask her opinion before we move her or feed her or touch her. And we all agree that it's okay if she doesn't say what we expect her to say. But we'll assume she has an opinion, is socially motivated and wants to be a part of her world. And we'll make sure she has a way to do that, with her device and lots of relevant pages for all of her environments.
Take that, "Profoundly Mentally Handicapped" diagnosis: meaningless, handicapping, limiting label!
Not for our friends!