I was thinking more about the lack of understanding we experience as parents of complex special needs children, sometimes even from other parents of special needs children because of the uniqueness of each child. I still feel that in some cases it is Unrealistic Expectations to hope for understanding. At the same time, there are times it feels so lonely to feel like no one understands.
Billy Ray had another one of those nights last night. He woke up at 1 a.m. and didn’t get back to sleep until 5:10 a.m. At 4 a.m. in the morning when he was yelling, giggling, and asking the same questions over and over again. At times like that it is hard just to stay awake and you just want to scream “go to sleep” but that would only agitate the situation more.
At this moment, we are experiencing a power struggle with Billy Ray because his “bulldoggey jeans” will no longer fit. Someone said “why don’t you just throw them away”. It is not that simple. We threw some pants in the dumpster once after we had taken him shopping to replace them with two pair. Weeks later he was remembering them and going into a meltdown because we wouldn’t take him to the dumpster to retrieve them.
How do you explain what happens on a day to day basis with incidents such as the two examples. Unfortunately you can’t always. Billy Ray can’t always be logical in his thinking and others can’t understand from their logical way of thinking.
We are back to the serenity prayer in a sense. We can change what we can in terms of finding understanding from those who can’t put themselves into Billy Ray’s illogical way of thinking. At the same time we have to accept that some will never be able to understand.
I know this is a repeat of sorts but it is where I am AGAIN today and I share openly with you.
Peggy Lou Morgan