It’s 2:44am….yep, Dayna has found a way to help me write my blog again. Unfortunately, it’s because once again she is up in the middle of the night. Now to be fair, her overall sleep is much better than it used to be. As you know from the past, 11 p.m.-5 a.m. was considered a good night’s sleep. Then this past fall, any sleep over three hours in a row was considered good, and any sleep at night was considered rare all together. After her six weeks at the Murdoch Developmental Center, an inpatient facility she was admitted to, they were able to regulate her sleep through a series of schedule changes and medications. Some of the medications were just being put into place by a neurologist right here in Raleigh when she was admitted. That neurologist specializes in sleep and we are still consulting with the her to figure things out on a regular basis. What the facility put in place for a schedule for Dayna was to have her to sleep between 9:30-10 p.m., and then waking up between 7:30-8 a.m. However, even there she still had frequent periods of waking up in the middle of the night for an hour or more. I mentioned this in my last blog. For the overnight staff at the facility, it just meant getting her back to bed and watching her until she was back to sleep. For us however, it means getting up in the middle of the night. Dayna’s room is on the first floor, so we have monitors to let us know when she is up. Unfortunately that also means every creek and rattle, gust of wind or even the geese behind our house come blaring through the monitor during the night as well for frequent false alarms. Turn the volume on the monitors down too much, and the next thing you know Dayna is standing in our doorway at 3 a.m. in the morning, and by that point she has usually helped herself to some snacks. When she first came home from Murdoch, she was waking up 3-4 nights a week, but sleeping through the night the rest. Then she started waking up 4-5 nights a week. Now we are back to a regular occurrence of it happening, and a rare occurrence of sleeping all the way through the night. Nothing has changed as far as what we are doing here. We are religious about giving her the medications each night at the same time. At 8 p.m. we have alarms going off in the house to remind us. And each night by 9:30-10 she is almost always asleep. Her bedroom has no computer, tablet or even radio in it. During the day she likes to watch videos on an iPhone and play on the computer in the office, so every night I hide the iPhone in my room and lock the computer with a password so she can’t sneak out to use them. Her iPad is now kept at school, and never at home since she had become so infatuated with it in the past. She has nothing in her room to distract her at night. We added a white noise machine thinking maybe there were some noises outside that were waking her, but still no help. We have tried some new medications at the doctors recommendation, but again no help. We turn her light off at night, but she turns it back on at some point in the middle of the night so we keep a low wattage bulb in it so its not very bright. She actually sleeps the same with or without a light. Again overall, she is getting much more sleep compared to before. I’m not getting much more, but she is. For me it is still a struggle. When she wakes up at 2-3 a.m., I bring her back to her room and put her back to bed. But I can’t just turn around and go back to bed. Most of the time Dayna will come back out at some point 15-20 minutes later. I have to sit downstairs and wait in case that happens to make sure I get her right back to bed. Sometimes I hear her talking and signing, and I have to go in and remind her to go back to sleep. Sometime she screams out loud, frustrated that she is not allowed to get up, and I have to tell her to calm down and get some sleep. Eventually, she does fall back to sleep and will then continue sleeping until 8 a.m. or so in the morning. For me though, by the time I’m getting back to bed I only have an hour to sleep before my alarm goes off. I always seem to feel worse when I try and pull that off so I usually stay up.
I wish I had followed my path of getting on the radio. I realize it would have been perfect for me to work on a morning show. Hell, I’m already up in the middle of the night, and would be better off with an early morning job. To be honest, I don’t really have a problem getting up in the middle of the night. In an odd way, I like it. I really do. When we still lived in Maryland and I volunteered at the fire department, I used to get bummed out if I slept in at the station and we didn’t get a call overnight. But I also had a different job then in sales, and a fairly open schedule. My frustration isn’t being awake in the middle of the night, its knowing that I will be very tired at some point tomorrow when I need to concentrate. I get exhausted by lunch time, and I don’t have a flexible schedule to work around that. It wears me down in a hurry, and that’s what frustrates me. I don’t mind being awake at 3 a.m., but I do mind not being able to slow down at 3 p.m.
I’ll be 46 years old in a couple of weeks, and Dayna will be 17 in a couple of months. I’m at that point in life where many of my peers have children the same age as Dayna. They are getting driver’s licenses, going to proms and picking colleges. I’m up scolding Dayna at 3 a.m. in the morning for singing Barney songs instead of going to sleep. It’s a crazy life, and it can be hard to remain positive, especially when you’re tired. It’s hard not to wonder what life would have been like if Dayna never had autism, but at the same time it’s also hard to imagine that life as well. It’s the only life our family has known. At this point, I would really just like to figure out how to live around Dayna’s schedule. For instance, if I continue to use this overnight time to write, I could really get this blog rocking! Personally, I have a ton of things I want to write about, and none of them are about sleep. Now if I could figure out how to make this a living, I’d be golden!
It’s 3:45am….I still hear Dayna softly talking in her room, but I can tell she’ll probably be back asleep any minute now. Funny thing is, I’m not wishing for bed, I’m wishing I was hearing fire department pagers going off. I want to go do something. I don’t know, maybe Dayna doesn’t have a sleep problem after all, maybe she’s just like her Dad.