I have been thinking a lot about a post called A little scared by Suzanne on the Diverting Daniel blog. Daniel reminds me a bit of Billy Ray in the picture to the right at 4 years old so full of promise and developing so well.
There are so many unknowns about the future for our complex special needs children. Suzanne was worrying about a lot of the what ifs. For example, what if Daniel is stronger than his Mom as he grows up. Those what if concerns are realistic and I do not wish to make light of them.
It is easy to let ourselves get pressured by the sense that we have to do everything right for our child. Suzanne was saying that she felt even more pressure to find the right programs for Daniel. I was thinking about that during my “soaking thoughts” (hot bath brings out all kinds of thoughts – some are actually good ideas). I remember feeling that kind of pressure to do everything right for Billy Ray when he was little.
I have shared bits and pieces of this story in other posts and in more detail in Parenting Your Complex Child but repeat it here to make the point of today’s blog. Billy Ray came to us at 15 months old diagnosed with Down Syndrome, chronic ear infections and malnutrition. He seemed to bloom in health and developmentally.
One of the things we had to consider was whether to have insurance policies to fund an insurance trust for him in the event we were no longer able to take care of him or to spend the money we would be spending on premiums for things like speech therapy not covered by our insurance company. We strapped ourselves to do bi-weekly speech therapy which was expensive at that point. We did that because at 2-1/2 he seemed to be gaining skills so fast. It seemed likely he could achieve at least a semi independent living program in adulthood.
At 14 years old, Billy Ray, experienced seizures believed to be a medication reaction. What was probably already the dual diagnosis of Down Syndrome and mild Autism became much more serious Autism within a couple of months of those seizures. His speech and behavior changed entirely.
This should not be construed to mean don’t plan ahead and do your best to get your child into programs which seem appropriate based on your current knowledge.
I think it gets back to our discussion the other day of the Serenity Prayer. As you go along with raising your child “change the things you can”. Do what is reasonable now to provide opportunities for him. Don’t push yourself too much to give him every opportunity because what seems important today might change as time goes on. A lot of times the “what ifs” will never show up.
You can do plenty without stressing. For example, you can start transitional planning for adulthood pretty young. In Parenting Your Complex Child there are forms to set goals for transition and to ascertain the skills needed for those goals while your child is still in school so those skills can become IEP goals or you can work on them at home. There will always need to be backup planning and changes made with time. However, it gives you the sense of being prepared.
Besides the “what if” fear there may be the “if only I had not that” regret to deal with. I experienced guilt beyond description for agreeing to use the medication believed to have caused Billy Ray’s seizures. His life has been changed dramatically. I had been hesitant about that drug though nothing supported that fear in the literature. I hesitated for a couple of years then went with recommendations and research that implied my “gut” was crazy this time. It was not!!
To be stuck in guilt over poor choices would negatively impact Billy Ray’s future. It was a struggle to accept the things I could not change but necessary in order to move forward and change what I can to make things work for Billy Ray.
Peggy Lou Morgan