If you were born after 1997, you probably don’t know what I mean by that. Google “Fred the Baker” for explanation. Fred’s alarm would go off in the middle of the night and he would begrudgingly get out of bed to open his Duncan Donuts store. I’m starting to understand Fred, but without being surrounded by freshly baked donuts. We have always dealt with a lack of sleep with Dayna, it is a common problem for children with autism to wake during the night. I looked back and at a post from a year and a half ago, March 29th, 2015. I was writing how happy I was because it was my birthday and although Dayna had come into our room all week long at 4am in the morning to yell ‘No School’, that particular day she had not and let us sleep in. Back track even further, November 4th, 2014. The title to my post that day started out “No School, No Sleep…..”, and again I was speaking of Dayna coming in during the night around 4am in the morning. I never thought I would be wishing for those days back, but here I am at 3am in the morning writing this blog. This time Dayna did not wake me, I had set my alarm for 2:30am to start my ‘shift’. You see, Dayna is already awake, and Deb’s shift of staying up with her has ended and mine has begun. Yep….we have shifts now, the thought being I can sleep from 10:30pm-2:30am. And she can sleep from 3am-7am. We each get 4 hours to sleep. And Dayna, she has not been been sleeping regularly at night for almost 3 weeks now.
My mind has been full of different subjects to write about lately. I was thinking of writing about how when I look back through the blog it has made me realize how long we have been dealing with the same issues. I wanted to write about the thought of Dayna living somewhere else like a group home, and how hard that was to comprehend for us. I was going to write about the delicate balance of raising a child with autism and how easily problems can come up. I don’t feel like writing about those things right now. Truth is, it’s hard to concentrate any of those thoughts together when you have not had a normal night’s sleep in weeks. As I said, I never would have thought waking up at 4:30am every morning would be something I looked forward to, but at least then Dayna had some form of a sleep cycle. For a couple of years she would usually go to sleep around 11:30-midnight, and even though she would wake us at 4:30, she would at least go back to her room for 30 minutes or so at a time. Sort of like an extended snooze button. It meant we could generally count on 5 hours sleep straight, and then another hour or so of staying in bed. Ah….those were the days.
What has happened the past few weeks is unbelievable. Dayna sleeps for short spurts, usually about 3 hours at a time, mostly during the day. It is impossible to keep her up during the day, and impossible to get her to sleep at night. It’s hard to pinpoint when this happened or what the cause is. We have tried everything, I promise. Lots of medications, and now no medications. Forcing a ‘schedule’, lights on and off, you name it. We have a doctors appointment in just over a week, but that is with a pediatrician. We are also trying to get an appointment with a neurologist, but that takes a little longer now that we are in a new area. I could run through everything we have tried, and it would fill pages. But, that’s not what I want to write about either.
I want to write about something that is irritating me….this:
No….its not that kid in the picture that’s irritating me, its just that the picture is of a kid. I like to do a lot of research on autism and the problems we have with Dayna. I spend hours a day sometimes looking at research and watching what institutions that work in autism are doing. I like to read other blogs and articles in the news. But as Dayna gets older, I find it harder to find relevant information in regards to her age. Google autism….and that picture above will appear. I don’t know if the world has noticed, but autism does not go away after a few years. The children with autism become adults with autism. Dayna is 16 1/2 years old. She has peers that are driving cars, working jobs, preparing for college and quickly entering adulthood. Yet everything about her disorder seems focused around children 10 years younger.
Google sleep issues and autism and your page will look like this:
Even though I did not put anything related to children in my search most of the links are focused on children. You find information like ‘make sure they have a proper sleep routine, read them a story and tuck them in, turn down the lights and limit their TV time’. Right…..Dayna could boot kick me across the room. She’s not letting me ‘settle her into bed’. Turn off her lights and TV, she will turn them back on. Take them out of her room, she will come out of her room and turn another one on where ever she likes. She may still sit and watch Barney videos, but she is no child. Other than strapping her down to bed like a prisoner in a hospital, there is no forcing her to sleep using the same strategies you would use for a small child. So much focus has been put on children with autism that the world now has to catch up to the adults who have autism. It makes it hard to determine what to do. Google “autistic adult only sleeps four hours” and the first link is “Wide Awake: why children with autism struggle to sleep”. Google “sleep medication for autism” and the first link will be “Effective Treatment of Sleep Problems for Children with ASD”. It’s all about the children, normally something that would sound good, except when you need to know what to do for a child that is becoming an adult. And its not just sleep issues, its anything around autism. The other thing I have noticed as I have researched anything having to do with adults and autism, you find a lot of current research in England, Canada and other countries overseas but not here in the states. I’m not sure why, but here we seem to have become so focused on early intervention we have missed the boat on those more severe children that will still need help when they are older.
So that’s what this post is really about. It’s not really about the sleep, I’ve written about that before. It just so happens that this is by far the worst its ever been. It’s that Dayna is getting older, and physically she is no longer a kid. It’s time to start thinking out of the box, because it seems like most of the current thinking is within the box of a child. It’s time for the research and planning to include those 16, 17, 18 and beyond into adulthood.
And one last note, and I apologize in advance if this sounds rude. My lack of sleep may be to blame! I started this blog to give some insight into the world of a family with a child (now becoming an adult) with autism. And I very much appreciate the kind words and thoughts, and I also appreciate when people forward the blog on and share the posts. I think it helps to see what’s behind the curtain. However one thing I have mentioned lately online and in this blog is the request not to give advice, usually anecdotal, on what to do or who to call. I recently dedicated a post to this subject and then ended it with “Got any advice?” I believe my attempt at sarcastic humor was lost in that case. It’s not that we don’t appreciate it, but understand that this is our life. I know, it seems to contradict what I am talking about in this blog, the lack of information. But I’m speaking from the point of view of someone who spends a lot of time researching the issues and therapies around autism. Trust me, no one looks into all the possibilities of what to do than the parents of any child with special needs. We’ve been dealing with it for 14 years now. If I wrote a blog on everything we have tried, and not tried, medications we have given her and not given her, doctors we have seen and not seen, you would have stopped reading long ago. The entire Harry Potter series would have been shorter. I do appreciate the thought, and I’m sure there is something out there that I have not learned about. But the parents of children with autism are a tight community and we already exchange information all the time between ourselves. Please don’t take offense if I don’t heed, follow or respond to any advice you may have given. We’ve most likely been told about it, looked into it or tried it already.
Unless of course you are offering beer or money as a form of advice, in which case please ignore the last paragraph and consider it the result of combining the stubbornness of having an Irish and Italian ancestry with the lack of proper sleep.
It’s now 5:19am. The donuts are done. Good Morning!