Yesterday I was talking with Ron, my son’s support staff, about Billy Ray’s responses to his schedule. I was recalling something that Dan Hobbs says at the beginning of his video Gentle Teaching . Dan says that the first thing he always asks himself is could he live the life his client is expected to live. If he can’t then there needs to be some adjustment.
I think of that often in planning for Billy Ray. There are parts of his schedule that I could easily live with such as the full body massage he gets daily with Baby Oil Gel shown in the picture. See Skin Care on my website for details about why gets this royal treatment. This is something that we must do for him.
It is a question that we are parents need to think about in our expectations of our children. Of course, there are things that must be done for their health and safety. For example, now that he is diabetic we can’t allow him to have everything that he wants. If we would allow it he would have 6 milkshakes in a day. We limit it to two made with skim milk, no sugar ice cream and sugar free strawberry jelly since we can’t find sugar free syrup like the regular syrup we used to use.
To the degree possible we have to allow them to have choices. Some Autistic or complex special needs children can make choices from two or three things. Some cannot. Billy Ray can sometimes and sometimes not. We do free choice visuals or use his picture symbols which aid in his choices but sometimes he is not able to do it that way either.
At the same time there are things about life that we all have to experience. It seems important to allow our kids to experience many of the things that are just part of life as possible. For example, when we eat we have to wash dishes. The floors have to be vacuumed and our bed made. Some special needs kids may not be able to do all of the normal things of life but I think we have to involve them in whatever they are able to do. It is definitely easier to just do dishes than involve Billy Ray in the task but it doesn't allow him to experience normal life if I do. It is just part of life and it helps them to feel better about themselves. In the picture he is unloading the dishwasher with consultant and friend, Keddie Wanless who was assisting with staff training.
Some may not agree but I think we have to allow our children to live with the consequences of their choices when possible. Billy Ray sometimes detours from his plan for the day by wanting something else just as it is time to go out for his community activity. Yesterday he wanted Ron to make him a hamburger. We had to tell him if he made that choice he would not be able to do lunch at a certain restaurant he does every Thursday. Of course, he wanted both.
I was thinking about the difference in the consequences we as parents experience and those we allow our complex children to experience. Yesterday I dropped a coffee cup and broke it. I had to clean it up and feel the disappointment of losing a favorite cup. Billy Ray recently threw his milk and started a chain of events that ended up with lots of broken glass and food all over the floor. We are cautious not to make a big deal of it for Billy Ray because he feels so guilty about his behavior that he can actually escalate more from the guilt. We don’t need to guilt trip him about behaviors that come out of impulse control issues, confusion or frustration. At the same time just as the rest of us experience in our lives there are consequences. We drop something, it breaks, we clean it up. It doesn’t need to be punishment just normal consequences of things that happen or our choices. To the degree possible, we can allow our children to experience natural consequences of life that we all face without harming them. They can grow from the consequences of life just as we parents do.
I agree with Dan that we should consider the lives we expect our children to live in terms. Some disabled children are kept in front of the television all day or expected to work in production lines which would be intolerable for some of us. We need to consider that constantly. At the same time, we need to allow our children to experience life even when it can be the pits for us all.
Peggy Lou Morgan