After a lot of conversations lately where I needed to explain how Billy Ray perceives things, how he needs to receive information and what he is unlikely to understand or accept, I remembered an article written by Susan M. LoTempio, "Service Station" an Oxymoron for Drivers with Disabilities. The article is written for journalists on the Poynter Institute website.
I have been around people who experience various kinds of disabilities my entire life. My Aunt Bonnie is wheel chair bound and I assisted with her chair as soon as I was old enough to help. However, Aunt Bonnie never drove a car. When I read Sue’s article I was shocked at my own lack of understanding in this process. I never thought about things like not being able to reach the hose or receipt.
The same principal applies in so many ways to the lack of understanding in the community whatever disability our children experience.
In Parenting Your Complex Child, I shared:
“In trying to explain to my friend, who is so skilled at looking nice, I realized there was no way she could possibly understand. Unless you live it, you cannot know what it is like to fight with your child to get him ready for an outing, not sure you were going to make it at all. If your child finally cooperates, you can get him to church in his Sunday best while you have thrown jeans on and brushed your hair wet because there is no time left to dry and curl it. You either have to go that way or stay home.” Excerpted by permission of the publisher from Parenting Your Complex Child © 2006 Peggy Lou Morgan, AMACOM, New York, NY 10019. http://www.amacombooks.org/
That friend had been an airline attendant and was presently a musician and pastor’s wife. Her appearance was a major part of her life. They did not have children for her to draw on. It was really unfair for me to expect her to understand. As you can see by the picture with this friend they developed a very special relationship as she got the chance to know Billy Ray for who he is.
It is tiring trying to explain your child’s needs to everyone. I find myself still getting frustrated in conversations with medical personnel who still don’t get it with Billy Ray. I have had to learn to:
“**decide how important it is for someone to understand and then prioritize the energy I will put into communicating to that person. If you meet a rude person in a store or restaurant, you might decide it is not worth it and ignore that person. If the person is a medical or special-education professional, put all the energy you can into determining the best method of communicating your child to them. That way, suggestions and decisions the professional makes regarding your child’s care will be informed decisions.” Excerpted from Parenting Your Complex Child.
I think you have to ask yourself if it is logical for them to understand your child without education from you and whether it is that important in the grand scheme of life.
If you want to read more on this topic, AMACOM has put the chapter quoted from as the sample chapter on their website.
Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Author Connect and Lighthouse Parents
Parenting Your Complex Child Yahoo Group