Funny thing, I have been trying for an hour to write you a post on being frustrated because otherwise sensitive people and highly skilled professionals so often just don't get it relative to our complicated children. Twice I have tried to publish the blog only to have the internet go down and I lost it. Then I saved it as a draft before trying to publish the post only to have it turn my post into unreadable squibbly lines. Seems somehow ironic.
Billy Ray has been diagnosed with diabetes this week and may also have pancreatitius, both of which could have been caused by the medication used as a mood stabilizer. I will share my thoughts on medications in an upcoming post and in Parenting Your Complex Child (AMACOM Books, Spring 2006). How do you explain to professionals who are sincerely trying to help him that there are only a few foods he will eat and he will let himself dehydrate before he will eat certain things? Yes, of course, you understand the importance of diet and you will definitely do your best despite your sense it is unrealistic.
I share this frustration with you here because I want parents to know that we all experience the frustration of trying to communicate our child to others who seem clueless.
I saw a young lady named Alma, who experiences Down Syndrome, in the clinic waiting room today. Her smile seemed to shine together with her copper hair and perked me up. I enjoyed chatting with her for a minute. Driving away I thought about Billy Ray when he experienced Down Syndrome before the symptoms of severe Autism began as well. I wondered would I have understood someone like Billy Ray in those days. Probably not.
Our job as parents seems to involve a lot of explaining our children and educating the community about his needs. That can be a frustrating experience. We have a right to be frustrated but we don't have time to be stuck in it. There is always something to do for our child.
Okay I'm frustrated but tomorrow I need to try a few more recipes from the diabetic cookbooks I bought yesterday. I actually got him to eat the biscuits from one of them instead of the garlic toast he normally demands tonight. Maybe tomorrow we'll find some new way to help Billy Ray adapt to what he needs to do.
You will probably tire of hearing that word "adapt" here. One of the chapters in Parenting Your Complex Child is Communicate and Adapt. That is really the answer to our frustration. We have communicate with our child in the way he needs to receive information, adapt his life to what works best for him and his family and communicate with others what he needs.