"I am leaving it up to you guys to work on getting a communication device. I wouldn't know where to start." I was talking to the mom of a terminal boy that I was visiting at home this past fall. I had come to check out how things were going after summer break.
I had visited last spring and had done an assessment of what was needed in AT after meeting with our service team, the OT, PT and SLP. They had been concerned that the student was losing his voice and the use of his hands.
"He likes to play video games and spend time on his computer," shared the occupational therapist. "Maybe you can help the family out with some ideas as to what would be helpful for him over the summer so he can access the computer at home."
I had met with the student at school and had found out that he loved to record rap music on a Mac computer he had received from the Make A Wish Foundation. You might recall my post last spring, "How to Rap While Losing Your Voice," which told the story of how I got to know this young man and how I heard his rap music on his computer.
I had written a piece at the end of the school year last June entitled, "Leaving the Ninety-Nine for the One" which shares my heart when it comes to wanting to do everything possible for a child. I mentioned this boy in that post as one that I couldn't wait to help out more.
So, here I was, this past fall, looking to set up a device for him for communication. The state had funding through his case worker to pay for the device - it just meant that the AAC representative, the school case manager, the SLP and myself needed to coordinate to start the procedure. I made all the initial contacts with these folks and began the process of setting up meetings. Before long, it was time for the holidays and I had not heard back from everyone. The day to day appointments and projects crowd out ones that are in a holding pattern and you have to be diligent to pursue them. Winter storms forced missed days and early closures of schools in December and a whole week of time was lost.
In January we started in earnest to set up a loan. I had met 2 times with the SLP and had been communicating with a regional consultant from an AAC company. We were setting up a time for starting a trial when the news came...I was in a state meeting in Portland last week when my cell phone buzzed in my coat pocket.
I went out in the hall and checked my voice mail. "Hi Lon, this is the speech path for ---, can you call me?"
I knew...our boy was gone. I just knew.
I called back, and yes, my hunch had been right. I had known he was deteriorating but had no warning or word that he had been pulled from school, was staying home now, etc. If I would have known, I would have gone to see him one last time and share with the family where we were in the process. Maybe it had been sudden and no one had known it would happen.
I regret that we didn't get to see him use a device and give him a way to tell his family some of the things he was wanting to say. I wish I would have been able to gather everyone up faster and have expedited the trial and purchase of some AAC. It is frustrating that we have so many people to coordinate, with so many schedules and appointments - people who have huge case loads and are trying to fight for meeting times in between. Life and death don't wait while we try to order our lives. I want to blame myself and say I failed him. There is no one to blame even when we want to find someone or something.
He was a courageous boy, full of desire to get all he could out of life. He knew his limitations and he knew he was living on borrowed time. His mom had shared with me that they had talked about it often. There was an unspoken realization between them all the time.
My heart goes out to the family today.
I got a wonderful email from his physical therapist. Our team is going to purchase a tree for the family to plant in his memory. When I replied, asking them to count me in, I got this reply:
"Thanks Lon we will and will let you know your portion.
I just wanted to say I appreciate all your efforts with working with ----. I know that you had some great ideas to make his life better for communication as well as improving his own personal fun on his computer.
You are wonderful—I look forward to working more with you and learning more about assisted technology."
"Thanks. I guess no matter how much you do, you always wish you could have done more."
The answer came back: "How true."
All the best to you,