Sleep is overrated. The studies are wrong. I am an exception. I have adapted and evolved, someone should study me! These are all things I have been telling myself and various appropriately concerned family members and friends over the years. I'm sorry, what were we talking about? Think I dozed off there for a minute...
Ok. I know that sleep deprivation is not unique to parents of autistic children. It is, in fact, one of those rights of passage we all go through as new parents and then become somewhat patronizing about with those who are not yet - never admitting for a second that we are insanely jealous of those childless bastards who can still sleep in! (If you are following the blog you will get used to my sense of humor... I hope!). It's like a club we all belong to and as much as we can complain about it, we often wear it like a badge of achievement. "Baby was up 6 times last night and I am grocery shopping, doing laundry, at work on time AND brilliant as ever, I am Wonder-freaking Woman!" or Superman - yes, dads are sleep deprived too. So I realize that at first glance you might think this is nothing new or I am preaching to the choir on this one. I don't think so.
What I am talking about here is not your garden-variety, goes with the parental territory, sleep deprivation. So what am I talking about? Well, for the first three years of Joshua's life, he did not sleep through the night once. NOT ONCE. In three years. At first it was the usual baby waking up at night deal, and this I expected. But as he got older, and his issues started becoming more apparent, things changed. By the time he was 2 and then for about a year and a half, I dreaded nighttime. I've always been a night owl, but Josh would not go to sleep. Not only would he not go to sleep, but he would get very upset about not going to sleep, and he would scream. All night. I would take him downstairs to try to minimize the disruption to the rest of the family, turn Blue's Clues on, and he and I would be there the rest of the night. Even with his show on, he would still be upset and scream most of the night. By morning he would fall asleep for what would amount to a nap, but then Zach would be waking up - no sleep for me. During this time, as his diagnosis was very fresh, I was all over the internet reading everything I could. It was apparent that sleep problems were very common in individuals with autism. One of the things I found was a study that had been done in Italy that had shown that autistic individuals either had very very low levels of melatonin or lacked it completely. Melatonin is a naturally occurring hormone produced in the brain, that is affected by light and dark cycles. You produce a lot of it when it gets dark out, less when it is light, leading to the relationship between melatonin and our circadian rhythms, more simply put, our sleep patterns. So when Josh was almost 3 and a half at a visit to his neurologist, Josh's dad and I asked about this. He suggested we could try giving Josh melatonin (a lot of people who travel use it to adjust to time changes, so it's readily available) at night to see if it would help him go to sleep. The first challenge was to find it in a form that I could give to him - he was 3. Luckily there was/is a company who makes it in capsule form. So I bought those, started mixing it in a little of his almond milk and giving it to him in a syringe at night when it was time for bed. One amazingly wonderful thing about my little toad, is that he has always been fabulous about taking medicine. As long as it is in liquid form, or I can mix it into a liquid like the melatonin, he will take anything I can syringe into his mouth. Wonder of wonders, it worked. Put him to sleep usually within 20-40 minutes of giving it to him. Wow! After 3 and a half years, finally, he goes to sleep. Well, keeping in mind that Zach was only 22 months when I had Josh, there was an additional couple years of new parent sleep deprivation going into it with him.
The celebratory high-fives were short-lived however, because though the melatonin was great at getting him to sleep, it did not keep him asleep. Josh will be 12 in August. Since he was 3, so going on 9 years now, his sleeping has been erratic. He goes through cycles where he will simply wake up between midnight and 2 am, and he will be up. Period. Most of the time he does not go back to sleep. Very rarely, I can go lie down in bed next to him and he will settle and go back to sleep, but more often than not, he is up, and I mean UP. Looking at this in a positive light, it's no longer the long hours of him screaming like when he was younger. Usually he is just incredibly hyper, loud, jumping and running around, playing with every toy that makes noise he can find, and, of course, asking for Blue's Clues and french fries. If you are wondering if I have to get up with him the answer is yes, I do. Developmentally Josh is hard to pin down, but for the most part he is like a toddler. I still have a baby monitor in his room, a video monitor actually, and will likely have to indefinitely. He is not like a typically developing child that could simply turn the light on in their room and read, play quietly, or just come to sleep in your bed if they need to do that. His being awake and up at any time completely on his own would be unsafe. So, I am up with him. This does go in cycles, and so there are certainly periods of time when he sleeps perfectly well through the night. I however, seem to have developed a sleep issue of my own.
I don't sleep. Much. Over the years with all this, I have developed my own disorder of sorts. I am not talking about insomnia, I have absolutely no trouble falling asleep. I just don't want to. Yes, you read that correctly. I choose not to go to bed. That doesn't mean I don't fall asleep. I can nod off at the computer, watching tv, wherever. But I will wake up and continue whatever I was doing instead of what my body clearly is telling me to do. I'm like a stubborn toddler, you know, falling asleep at the table or in the middle of playing with something, and you tell them it's time for bed and the immediate response is "no! I'm not tired!" It became so bad over the last 2-3 years or so, that I would stay up until 4- 4:30am, knowing that I would have to get up just after 6am to get Zach ready for school. I have been living on 2- 3hours sleep. What the hell is wrong with me?! Well, good question. Like I said, Josh does go through periods of time where he sleeps through the night just fine, so I can't blame it all on him. So why do I have this compulsion, which is really what it has become? I have theories. I mean, I can tell you what I feel brought me to this point. I mentioned before that I have always been a night owl and this has remained true even with the transition to parenthood. I have never been a morning or a day-person. I was a nurse before I had the kids and was used to crazy sleep schedules. I was one of a small percentage of the women I worked with who actually preferred night shifts. I think that has helped me cope with this particular piece of things. Two things seem like the likely culprits in my seemingly inexplicable refusal to sleep when I should: 1. Josh's behavior being so unpredictable, I never know when he is going to go in to a not-sleeping cycle. Somehow my rationale over time became one of "I'm more tired when I have been asleep and then I have to get up with him, so if I just stay up, then it's easier". And 2. Josh is very demanding of my time when he is awake. All kids are to a certain extent, but if you have been reading this blog you are getting an idea of what it's like with him. The Blue's Clues and the french fries requests don't tell you the half of it. I spend all my time when he is awake and home looking after him and his brother. Yes, they go to school. But that time as most moms will tell you, is really not your own, even though it appears so to the uninitiated. If you work, you are at work and that is certainly not your own time. If you are a mom who does not work outside the house, then there are still household errands, chores, school obligations, doctor and dentist appointments for the kids, and the ever present threat of being called to come get your child from school because they are sick. Which happens. So between normal parent stuff and the added extreme of an 11 yr old who still needs me as much as he did when he was 2-3, I don't feel like I get any "me time" until the kids are asleep.
I believe that these things together have lead me to the extreme I am at now. I know it is not good for me, my family, friends, and doctor tell me this regularly. I am working on it. My body has finally decided enough is enough I think, because I don't seem to be capable of staying up until 4 or 5am now except occasionally or if Josh is up. But this is a recent development. I am probably getting 4 -5 hours of sleep a night now, compared to the 1-3 hours I was getting up till a couple of months ago. So it's an improvement. I know it's not where it should be but it took almost 12 years to get here so I imagine fixing this will not be an overnight thing... pun intended. :)
*Edit: Apparently there is a whole book with this title, not surprisingly a compilation of Mommybloggers' work, http://www.amazon.com/Sleep-Weak-Mommybloggers-Including-Finslippy/dp/1556527721 so credit where it's due though I honestly had no idea until today !