All parents have fears, especially for our offspring after our death. How will our children cope without us? Will they be financially sound? Will our grandchildren be healthy? How can John manage his affairs without us? What about Sally? Will she find the right man?
Parents of special children have fears, also. Our fears differ. Who will help Greg wash his hands after he uses the bathroom? Who will make sure his air purifier is clean when the white light blinks? When he has a doctor appointment, who will interpret Greg's gestures? As you can see, we are more specific, for it has been that day to day task that helps us make sense out of our lives. Our children need us in ways that are incalculable.
After life in the group home turned neglectful and negative, we brought Greg home and found the ideal place to live in the Woodsy House. Greg acknowledges his acceptance of his new life here by shaking his head affirmatively whenever we ask him, "Greg, do you want to live in the Woodsy House forever?" We can make that happen for him with a program called "Lifesharing". We have begun to calculate how much money Greg will need, how to set up the house for a caregiver, how to make it easy for our other son and nephew to manage Greg's affairs, how to keep him here even when the snow is two feet deep (we bought the granddaddy of snow blowers) and when the winds knock down a tree (we have already cut down the trees that might fall). We cannot ask a favor, that someone take Greg into their home after our death. His behaviors can be pretty difficult to handle at times. And so, you see our dilemma. We want to plan for anything that could happen. Sadly, nobody can plan for all eventualities, yet that does not deter us.
Our biggest fear? How do we find a caregiver who will respect Greg for his individuality, who will heat up his chicken and cut it perfectly for him, who will tuck him in with a hug each night and who can work our granddaddy of a snowblower). This is the intangible fear, the fear that Greg will ask, "Where's Dad" every day or the fear that Greg will be unhappy without us, or that he might act out and have to be institutionalized. We could not bear that.
My brother just passed at age 56. He had a blood infection along with his mental disorder, and his heart gave out. My mother passed at age 70 of early onset Parkinson's likely brought on by her heavy reliance on lithium and a malady termed brain toxicity. Our favorite bowler just passed. Timmy had Down Syndrome with all of its joys and one huge sorrow, his early death. I am beginning to see a pattern. I look around me and do not see many elderly people with mental or neurological or emotional disorders. Where are they?
This week I had dinner with a friend who has a special child. She mentioned that our children tend to die younger than the norm. Hearing those words shook me up but I did not dwell on them until the next day. Now I have a new fear.
In Greg's birthday present/scrapbook, I combined his art work with photographs to teach Greg about our new home and to reinforce the idea that he has a different address now. Look at my next blog to see some of the pages and learn about the process of creating for and instructing the visual learner.