The red light was on my voice mail yesterday morning when I came to the office after being out with one of "my boys" yesterday who is back in school after surgery and is in a recline-gurney type chair until next Wednesday. I was helping him with a sip and puff access switch to his boardmaker communication boards on his laptop.
I listened to the message. It was the boy's mother from my previous post yesterday who is battling Muscular Dystrophy along with several other complications.
"My son came home with your card and told me you talked to him about recording his voice. I'd like to talk to you."
I couldn't tell from her tone whether I detected excitement or anger. I wondered if maybe my reference to losing his voice was premature and she was upset. I knew the therapists had met with her but I also knew he didn't have speech services and was in the process of getting the evaluation to be qualified for that.
I braced myself for the worst and called.
"My son came home from school for the first time yesterday excited and happy about his day. It took me a long time to understand what happened and I still don't quite get it, but he told me, "These people came, mom, and they showed me how I can talk!", so tell me what he is talking about." She was obviously happy about the conversation with her son and I could relax.
I explained the way we could record his voice with a free program, Audacity, and then he can archive the files as Mp3's or WAV's to save for later.
"All his life he has been told he should be learning sign so he can communicate that way. We even had a specialist show us a clicker to use with one for yes and two for no so he would be limited to only yes and no response. My son said "I want to be able to talk mom."
My research had turned up that they were relatively new to this area so these were recommendations from somewhere else.
I explained the Tango lab software that allows the user to import sound file messages later into the device. She explained she has access to funding for him and can get most things for him. that was wonderful. This meant we could look beyond basic school services and get an SLP involved in looking at a real AAC device.
"He was given a big expensive Mac last year from Make A Wish Foundation that he uses for his music but none of us know how to really use what is on it."
I set up an appointment to do a home visit next week so we can start the job of showing him how to archive his voice and access his music recording and production. At school we will utilize Co:Writer, the Cruise Trackpad and the Click n Type Virtual Keyboard for him to access his writing/schoolwork that he needs to do. As his condition worsens, print disability access for etext will be a big help.
I hung up the phone remembering what she had said when her son came home from school yesterday: "Yesterday was the first time he has come home excited about school. No one can understand him anymore so he has just given up but yesterday he found some hope."
Hope. wow. What would I do if my life had no hope anymore? What if my son had no hope anymore? And here we were giving it back to him. The mom had shared, "My son and I both know this is a terminal illness and he knows he will die, we have talked about it, but mostly we talk about how he can live."
I need to take that lesson to heart. I need to focus on what I can do to really live my life - not look at all the limitations to it. I need to instill hope in everyone around me and allow it to thrive in my own life everyday.
As I have been preparing the AT Blog Carnival Edition 2 for Monday's release, I have been amazed at how many folks have submitted posts that are just like this young man I have just met. Some of them have had insurmountable-looking odds, yet they are not only surviving but going way beyond what most of us do on a day to day basis. Their daily level of wellness would be a day I would wimp-out and want to take a sick day and stay home. But they continue to push themselves forward. I can learn a big lesson from that.
I hope you have a great Saturday and a wonderful Sunday.
All the best to you!
1. AT Blog Carnival will be up Monday at: http://atblogcarnival.blogspot.com/
2. No Limits to Learning Live, I will host Patricia Sublette, Ph.D on TBI and education, Tuesday, April 29th at 10:30 am Pacific Time. Tune in and call in with questions or listen to the archive later. http://www.blogtalkradio.com/nolimits2learninglive