This reminds me of a mom (Margaret) I know.
Her son had a very similar disability.
We met her at a special place in Philadelphia, The Institutes for the Achievement of Human Potential, where we had taken Andy for 6 years in the early 1970's. She was in the same "starting group" as we were. We went back there (us from Colorado and Illinois, she from Irvine, CA) every 3 months for evaluation and reprogramming.
Each of us set up a home program for our kids using volunteers to provide intensive therapy 13 hours per day 6 days per week, using community (mostly church) folks (we both ultimately had about 375 over the years), which we recruited, trained and scheduled.
My wife and I had each other for support and rest. Margaret was all by herself. The dad had pretty much disavowed the son. She not only had this program for John, she took him everywhere (operas, sporting events, shows, trips) and did everything with him, much like this father, often carrying him herself and/or in his specialized wheelchair. We maintained correspondence over the years after we both left the Institutes, and I visited her in CA, taking her and John to dinner. John and I would occasionally exchange emails, which he accomplished on some special computer equipment activated by his hand movements, which were very little.
John died a few years ago, and Margaret moved to Minnesota with her family. She is in her 70's now, and last I heard she was volunteering with other children with profound disabilities.
She is one of my heroes.
Last edited by DnvrFox; 04-22-07 at 07:27 AM.