Tuesday, April 28, 2009

Autism Awareness #8 - Sleep & the Lack of It

Sleep and the lack of it, once dominated nearly every conversation that we had. Get us together with other parents of children with autism and we could talk about our sleepless night stories for hours.

I am thrilled to say that (for now) those nights are but a distant memory. Every now and then someone gets sick and we wake to the sound of Will or Owen singing or kicking the wall and a feeling of dread sinks to the pit of my stomach. Fortunately, it is merely a shadow of the nights we used to have and it passes.

I thought I would copy two of my archived posts about our sleep issues with Will to offer a glimpse of how difficult it can be on families. For any teachers or therapists reading this, I beg of you to have some compassion towards parents who are living through this. Please excuse our absent-mindedness, our emotional outbursts, our short tempers or the fact that our kids are not dressed or brushed. We are hanging on by a thread. Not to mention that our kids' behavioural issues are likely stemming from exhaustion.

Here's a glimpse at our past:

Thursday, January 11, 2007

Sleepless Nights with Wild Will

No fun pictures for today's post. Just some whining and complaining. Can't help it. When your head is filled with cotton, you can't help but waanh a little bit.

Autism or not, I know there are parents everywhere who have kids who don't sleep well. You can tell which families have got'em. They're the ones with the heavy bags under the eyes, the shirts that are on inside-out, the permanent coffee cup glued in their palm. They snap too much at their kids, they choose tv over playing at the park and they generally look like hell. I sympathize. We've got one. Sometimes two (and on those days we don't even make it out of the house in the mornings for people to see if we fit the description).

We should have known from their birth that this was going to be a lifelong battle. I remember after the twins were born, listening to other new moms brag how their kids were sleeping through the night at three months old and secretly hating them. I remember trying all the same things I had done with Jake and wondering why it wasn't working with Owen and Will. I'm not saying that there IS a reason for their insomnia, I'm just saying they were different. I assumed it was because they shared a room and woke each other up all night, or because they had some digestive issues that caused feeding issues that caused them to wake up to feed more often that caused our sleep deprivation that caused our insanity........ Okay, I can't go back there. Many of you can remember those days with me and will recall that it was definitely not a memorable experience to be with myself or Jonathan during that first year and a half. 1 to 3 hours of sleep for 18 months would destroy the strongest of men. We somehow survived it.

But that's my point. I thought that those newborn days were long over. I was wrong. Now I don't have a newborn whose mewlings cries may have been annoying at 3am, but are not nearly as anxiety-ridden as when your bedroom door gets slammed open at 3, your lights all get turned on, your taps are running full, your other 2 kids are crying because they were awoken the same way. You follow the trail of lit lights downstairs to find a bag of bread torn open with its slices all over the floor and your water cooler depleted of half of its contents. Oh! Is that your sleeve of newly developed photos floating in that 6 x 6 ft giant puddle on the floor? The Wiggles are blaring full blast from the tv, your back door is wide open - freezing air blowing in and where is the culprit?? He's got one foot on the front steps after having figured out how to unlock the front door. Middle of winter. An Alberta winter. It means cold. And if I hadn't woken when I did, Will would probably be on his way to take a dip in the freezing Bow River.. his runaway destination.

There are periods that can last a couple of months where I think "we are so lucky that our kids don't have sleeping issues". When the world is right. When we get 7 to 8 hours a night and our kids hop into bed happily by 8 o'clock and sleep right through. How could I have forgotten that those times can quickly disappear and turn into this?

We are now going on Week 3 of Will's insomnia. Sometimes it shows its ugly head at bedtime. Hour after hour of listening to Will kick the wall and vocally stimming his "oo-oo's and ee-ee's" all night long that can suddenly turn into screaming or crying. Seeing his light flick from underneath the door. You can't help but laugh when you hear him knock on the door from the inside. The worst of it is, you can't check on him. If you do, he knows that you'll come back again and again. So you try to stay out. But if you don't check, you're running the risk of finding a bed or a heating vent full of poo (sorry for the weak stomachs out there) and that usually means a huge cleanup and a bath. You may also risk missing a near accident like the other night. Jonathan abruptly opened Will's door because he heard that he was making a ruckus. Will panicked and leaped off the 6-drawer dresser he was standing on, smacking his cheek. -We somehow avoided a trip to emerg for that one.

But the worst is definitely the wake-ups in the middle of the night. You think you've escaped it. After a long day, the kids have been in bed since 7 or 8 because they couldn't keep their eyes open and you crawl in around midnight. 1 o'clock and BAM! The lights go on and so goes the rest of your sleep. When Will wakes up in the middle of the night, it's not a situation where you can cuddle with him in bed until he falls back into la-la land. Will is up. It's like his brain thinks it's daytime. You can guarantee that you'll be up with him at least until 4 and maybe you can catch a few more hours before the rest of the house has to get up. Just like the newborn era.. Jonathan and I usually argue every single night about whose turn it is to stay up with Will. It's a miserable time. Being a reader, I wouldn't mind the extra time to sit up with a book if I knew I didn't have to chase Will. But you can't sit still with that boy because he destroys everything. He won't sit still and he won't stay in one room for longer than 5 minutes.

Last night was the worst. And the reason for this complaining session. Jonathan was out of town and Jake was out for a visit at Sally and Greg's for the evening. I was looking forward to spending some quality time with Owen and Will. As soon as their therapy ended, no later than 5 minutes after, Will took a leap off the coffee table and knocked his hip off the wood. He yelled so loud! The poor little man bruised himself (yet again) and I felt pretty bad for him. The upset from his hurt turned into a full eruption of a tantrum that lasted an entire hour. There was a point last night, when I was kneeling on my kitchen floor, trying to keep my balance as Will threw his whole body weight against me, clawing at my eyes and mouth, trying to bite my hand, all while trying to butt his head up under my chin.. all at the same time.. I had a pot of Kraft Dinner overflowing and sizzling on the stove beside me.. Owen sitting at the table - crying because he wanted his dinner (yaay! as an aside- at least he wanted to eat!).. I looked into Will's eyes and it was like he was torn between wanting me to console him while wanting to take out his anger on me at the same time.. I suddenly saw him 10 years from now. 10 years stronger. 10 years bigger. 10 years angrier. It scared me. I am grateful right now that the tantrums at home have significantly decreased since we moved out here. But when they happen, it's a reminder of how strong and aggressive Will can be. Hopefully as the years go on, he'll learn skills to help him cope with his frustration so that I won't be lying flat on my kitchen floor.. 10 years from now.. after being knocked over by him. Or Owen. Or Jake. Scary.

But as I was saying. The tantrum lasted quite a while and after figuring out that a really, really deep pressure hug was doing the trick to subside his sobbing, Will finally got a hold of himself again. He disappeared in a flash and I assumed he was off for some time to myself. By this point, Owen had huge alligator tears rolling because he could see his box of Kraft Dinner sitting on the counter, but couldn't understand why it wasn't in his mouth. I decided to leave Will be and feed Owen. It's always a trade-off. Could Will be doing damage while I'm sitting here with Owen? So after Owen ate (a whole bowl!), I went up to check on him. Couldn't find him anywhere! Finally realized that the pile of bedding on his bed was Will sound asleep. I wish I had taken a picture. He was so peaceful.

Now here presented the real problem. It was only 5 o'clock. I decided to let him sleep. I thought that I could handle a 3 or 4 o'clock wake up if that was going to be our fate. So Jake went to bed, Owen went to bed. I cleaned up and thought I would get myself to bed as well so that I could get some precious hours in before the wake-up when BAM! 9 o'clock and guess who's up?

I realize this story is way too long and boring, so I'll cut it short. As long as you get the gist of what a night in the life of Stacey and Jonathan is like. It's not sexy and it's not glamorous. It's cleaning poop out of heating vents, it's cleaning up minor floods, it's coaxing Will down off of the top of the wall unit and it's staying up with him from 9pm to 3am, only to have Owen wake up for his day at 4am. Nights in this house are hell.

So again.. excuse my whining and complaining. But I'm back in newborn mode. And for those who were around back then, you probably know to steer clear this time as well. :) It's 7 o'clock.. gonna try for a bedtime and a full night sleep. Wish me luck!

---------------

Wednesday, May 23, 2007

Sleep Deprivation

Will isn't sleeping. Again. We always seem to go through phases with him and before the time change, we had a run of at least a month where he slept from bedtime right through until about 6 o'clock. The time changes have always affected my boys, particularly so with Will. This move to Calgary has only enhanced the difficulty in this transition. It's only late May and the days are getting longer and longer. It isn't dark until 10:30pm which means Will won't sleep. There are darkening shades, a pull-down shade and a curtain on his window but it makes no difference. Something in his brain tells him it's light out and he won't sleep. Bedtimes are becoming more and more difficult because he is fighting it all the way - somersaulting across his bed to kick his heels into the wall, jumping off his dresser, standing in his windowsill, all while yelling the whole time. Not fun.

Lack of sleep for Will means a miserable, moody, inattentive, sleepy little boy all day long. The tantrums have come back and their intensity has kicked up several notches. He bursts into tears for no apparent reason and gets lost in his stimming when he should be attending to task. All behaviours to be expected when you're sleepy.


So off to his pediatrician yesterday. The result was the doctor's recommendation that we try putting Will on Melatonin.

---and here I decided to put aside my laptop and go to bed. It's now four days later that I finish this post---

So here is the scoop on Melatonin:

According to Newsweek® magazine -

"Melatonin is the all-natural nightcap. It's secreted by the pineal gland, a pea-size structure at the center of the brain, as our eyes register the fall of darkness.

"At night melatonin is produced to help our bodies regulate our sleep-wake cycles. The amount of it produced by our body seems to lessen as we get older. Scientists believe this may be why young people have less problem sleeping than older people.

"Studies suggest that... supplements can hasten sleep and ease jet lag, without the hazards or side effects of prescription sleeping pills."

It may have many other uses and has been reported to make people feel better, strengthen the immune system, and reduce free radicals in the body. Current research is underway to determine its effect as an anti-oxidant, immno-modulator in cancer, delayed sleep-phase disorders, and jet lag. Tests are still under way so there is much to still be learned about it and its effects on the human body. Travelers and people suffering from mild sleep disorders.

According to the article, a typical comment from discussion groups on the Internet is, "'Folks, I've tried it and it's great. It has ...restored my sleep cycle, given me lots of energy.'" (6 Nov. 1995, p. 60-63)

From http://en.wikipedia.org/wiki/Melatonin:

The Melatonin signal forms part of the system that regulates the circadian cycle, but it is the CNS that controls the daily cycle in most components of the paracrine and endocrine systems[8][9] rather than the melatonin signal (as was once postulated).

Nobel Prize laureate Julius Axelrod performed many of the seminal experiments that elucidated the role of melatonin and the pineal gland in regulating sleep-wake cycles (circadian rhythms). In humans, melatonin is produced by the pineal gland, a gland about the size of a pea, that is located in the center of the brain, on the dorsal surface of diencephalon.

Normally, the production of melatonin by the pineal gland is inhibited by light and permitted by darkness. For this reason melatonin has been called "the hormone of darkness". The secretion of melatonin peaks in the middle of the night, and gradually falls during the second half of the night. Until recent history, humans in temperate climates were exposed to up to eighteen hours of darkness in the winter. In this modern world, artificial lighting typically reduces this to eight hours or less per day all year round. Even low light levels inhibit melatonin production to some extent, but over-illumination can create significant reduction in melatonin production. Reduced melatonin production has been proposed as a likely factor in the significantly higher cancer rates in night workers,[10] and the effect of modern lighting practice on endogenous melatonin has been proposed as a contributory factor to the larger overall incidence of some cancers in the developed world.[11] As inadequate as blood concentrations may be in brightly-lit environments, some scientists now believe that people's overnight output of melatonin can be further jeopardized each time they interrupt their sleep and turn on a bright light (suggesting that the lower brightness level of a nightlight would be safer). Others suggest that such short exposures do no harm.[12]

So the long and the short of it is that as of last Thursday night, we have been giving Will the melatonin supplement every evening, an hour before Will's bedtime. It's an over-the-counter supplement and Jonathan picked it up in the form of a chocolate-flavoured strip that dissolves on the tongue. The first couple of nights were a total battle and Will kicked and punched while we tried to keep it in his mouth. His exhaustion and lack of sleep were at its peak and Will konked out early both nights, but was up by 1am and was wide awake to start his day. Brutal.


The last two nights have been a little better. I managed to get the whole strip to dissolve, Will fell asleep at a decent hour, but he has still been waking up sometime between 4:30am and 6am. Not as bad as 1am, but still not a great night sleep for Mom and Dad. At least Will seems to be coming back to his old self. His staff say that he was "on" throughout the day and was able to focus and attend to task.

Here's a scary glimpse of what it is like to live with the fear that Will's sleeping habits put on us all. We have installed a security system in the house. Not to keep burglars OUT, but to keep Will IN. There are alarms/chimes on all the exterior doors and we also installed one on Will's bedroom door. Each time the doors open, the chimes go off and the idea is that Jonathan or I should hear and know when Will is out of his room or if he has opened a door to outside. The problem of late is that we are soooo tired from our own lack of sleep that we are somehow sleeping through the sound of the alarm going off. So we are not exactly sure what time Will has been getting up in the morning. We get up to find Will's trail of destruction throughout the house and we can tell he's been up for ages. This morning I heard the chime sound just before 7am. I hollered to Will and he scooted into our room and hopped into bed with us (so cute too because he crawls right in the middle and pulls the blankets up under his chin, then checks to make sure that Jonathan and I both have our blankets pulled up as well). I was thrilled because I thought that he had slept through the night and he was in a great mood. Michelle burst into our room looking for Will. She had just woken up to find the main floor freezing cold and our back door wide open- the wind blowing in. Michelle ran outside to find that the side gate was also open, which means if Will had run out, he was long gone. We all know now that Will was tucked in safely under my covers, but you can imagine Michelle's panic. Yes, Will's safe. But at some point in the night.. or in the morning.. he was up and on the loose. I don't want to think about it anymore.

So that's that. Tonight is a new night and we'll see what happens. Wish us luck!

-----------------------------------

I must say that all of these issues absolutely disappeared within the week that we introduced some major dietary changes. I'll save those changes for another Awareness item. To any of you parents suffering through your own sleepless nights.. we are an example of people who came through the other side of it!! I'm sure I just jinxed it and we could go through the same phase again, but at least now I believe it won't always be so bad. It can get better.

4 comments:

Rachael said...

how wonderful that you are sharing all of your wonderful knowledge. there is so much that i did not know.

Jenni Jiggety said...

Bless your heart...I had no idea insomnia could be such an issue for Autistic children.

Jenn said...

I must admit, I had to laugh reading about the "trail of destruction" that you find. I read it to my husband, as well. I knew that other children with asd have sleep problems (as well as food problems :)) but my husband and I thought we were just horrible parents that didn't know how to deal with our son. Our son, Jack, will be 5 next week and we have been battling the sleep issues off and on for about a year. On monday this week, he slept from 10pm to all of 230 am. he has averaged 5 and a half hours of sleep every night so far this week. It takes him 5 minutes to go downstairs, get on the counter, pour Nesquik all over the counter and kitchen floor, unravel an entire roll of toilet paper onto the floor, and empty an entire gallon of milk into 12 glasses. The other night when he woke up at 2.30, neither my husband or myself got up until 3.30. The only reason I know he was up then was because I rolled over to look at the clock, said, "he's up" to my husband and fell back asleep. I'm sure you can imagine the destruction I found after an hour. We also use melatonin which is great to get him to go to sleep, but it does nothing to sustain his sleep. I'm currently in the process of making him a weighted blanket to use at night since i think a lot of the sleep issues are sensory related. I'm going to speak with his developmental pediatrician in a couple weeks about any other options we have. Otherwise, we are just waiting this insomnia episode out. Thank you for posting this. I cannot tell you what a relief it is to find someone else who has gone thru what we are going thru and came out sane on the other side!

Stacey said...

Jenn- Thanks for stopping by. I, too, am happy to learn of other families who struggle with this. I sometimes explain it to people in terms of the newborn-years. Except for the older child, they may keep you up at all crazy hours like a newborn does so that you are a walking zombie and sleep deprived, but the child can be a one-man wrecking crew while he's awake when a newborn just cries. Those days were hell for all of us.

Have you tried the time-release melatonin? I'm not sure where you can get it (it might just be something to order online), but I hear it disperses it throughout the night.

Ever since we went GFCF we have slept through the night. More significantly (and I will almost swear that this was the true factor that kept Will up and crazy throughout the night), we eliminated ALL artificial dyes and colouring.

I wish you all luck and happy birthday to Jack!!!

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