Sleepless in Delaware


If you ask any autism parent how their child sleeps at night. The answers will be totally different. Some parents may say that their child sleeps like a baby.  Or my child sleeps though the entire night. Then  you will get my response. Sydney’s sleep pattern is irregular and painful!

Sydney has never been a great sleeper. But when she was younger because of the seizures. I would sleep on the floor in her room. She never was a child that slept through the night. But she would fall back asleep.  For the past four years Sydney would wake up at 3:00 am and would stay awake! Which means I would also be awake with her. This was torture.

The one good thing is that she was in a happy mood. Singing, dancing, reading but just not sleeping. The downfall is that she would sleep at school which wasn’t help me at all. I needed the energy that she had. How could she function on a lack of sleep?

Before you tell me that she was going to bed too early. Let me explain that Sydney could go to bed at 8:30, 9:30 or midnight. And she would be wide awake at 3:00 am.

When we were in Michigan on vacation. She did start to sleep until 5:00 am. I think that it was because we all had our own beds and slept in the same room together. Epilepsy is sometimes the cause of her lack of sleep. Many of her seizures occur at night. She would walk into my room and ask me if she was safe. Some nights she was finally able to verbalize that she had a nightmare. At least I knew the reason why she couldn’t sleep.

Melatonin was our friend. It helped Sydney fall asleep but that was all. At our last visit with her doctors. I think they saw the desperation and the bags under my eyes. The plan was to take her off melatonin for a five days and chart her sleep pattern. Then, if needed I would introduce a medication that would help her sleep. Here we go again. I am trying to wean her from medications. Adding another medication was not what I wanted to hear.

Sydney slept until 5:00 without having Melatonin. I felt like a new woman. It was great. I haven’t given her the new medicine yet. For one week Sydney slept from 9:00 -5:30 am. This was the best gift God could have given me. My body, mind and soul felt so much better.

For the past two nights, Sydney has slept until 8:00 am and 7:00 am. I will take it! Maybe things are changing in my favor. Going through the storm of lack of sleep may finally be over for Copher’s Community. Sydney is happier than ever! And she was wide awake at 6:00 am today ready for summer school!

So long sleepless in Delaware.

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