An Ordinary Mom's Musings

Another doctor… Another test… We are lucky, we know D’s primary diagnosis- Autism.

Unfortunately, it also comes with many other co-occurring issues. We have been looking for answers about his sleeping issues for years, and I was severely frustrated the last visit we had with the sleep doctor, when they said again, we don’t know what’s going on. Try these things. (We’ve been doing those things for years!). This particular type of doctor we have now seen 3 different ones this year. We saw a pregnant LNP the first time and then because she was out with her baby, we saw a different LNP. The second one seemed to really listen and was able to see Daniel sleeping in action. He wouldn’t wake up for her in the office. She recognized that this was a severe problem and referred us on our next visit to one of the two heads of the clinic- a doctor this time.

Once again the tests didn’t show anything wrong except that he isn’t getting enough sleep at night, in spite of being in bed from 8 pm- 7 am and giving him medication to sleep. The doctor I felt was really blowing us off because they weren’t able to find anything wrong, gave us suggestions we have been using for years, sent us home and said come back and see us in the fall. 

Can I tell you the rage I felt at that moment? This child has missed tons of school because I can’t get him to wake up and get him to school and even once I do, he’s falling asleep in class on the cold hard floor in spite of all the noise and his teacher can’t wake him. We are usually extremely vigilant about getting him to bed on time. He wants to go to bed. He knows how important it is to get sleep as he always feels tired.

I want some help dammit! Instead, I’m left feeling helpless and like we just wasted all this time out of school and money once again trying to find answers. It is frustrating and very disruptive for him because it’s not just his sleep. It’s learning he’s missing out on, it’s his ability to handle and control stress, it’s his ability to function.

I say we are lucky and we are. I have friends whose children have mysterious symptoms and they and the doctors have no clue what is going on and it’s life-threatening. This part has been surprising to me just how common it is for families to be fighting for answers. You think, “We have all these medical advances. Why can’t they figure out what is going on with my child?” The truth is that the human body is still very much a mystery.

So we will continue going around and around on this merry go round, talking to one doctor and then the next, one test and then another. Praying that at some point we can stop doing tests, and finally have some answers that will help.