Repost: Sleepless in Autism

15 Mar

It’s coming back more often these days- the sleeplessness. For three straight nights this week, he has gone to bed later and later than usual, keeping the whole household up till the wee hours of the morning. Last week was the same story. At two in the morning, I had to let him go to the schoolhouse to expend his manic energy until he fell to bed exhausted. And yet at the first sign of sunlight, he was up again, seemingly unbothered by the few hours of sleep he got.

It’s a wonder he can run on so little rest and sleep whereas I am dullheaded and fuzzybrained already. Ah, well, as long as the good humor stays, we’ll make it through more nights like this. I pray.

~0~

October 4, 2010

It is one of the most beautiful things in the world, the sight of a child sleeping the sleep of innocents.

Our family was lucky for many years. For all of Alphonse’s aggression and self-injurious behaviors, we could always count on him to fall asleep at a reasonable time and stay asleep the whole night. We were always ran ragged during the day- exhausted, nervous, and tense- but nighttime was respite time, something to look forward to at the end of a miserably difficult day. As Alphonse grew older and the combination of age, education, exercise, and medication smoothened the edges of this high-strung, excitable child, sleep also became his respite time rather than just ours.

Unfortunately, in the last three months, he has been having great difficulty going to sleep. When my husband and I discussed it today, we realized that Alphonse has had more sleepless episodes in the last three months than in the preceding three years combined. Last night, he was awake the whole night, falling into exhausted sleep only at five in the morning. Four hours later, he was up and about. A few weeks ago, he was awake for more than 36 hours, prancing and pacing throughout the night, sometimes laughing himself silly, sometimes shouting himself hoarse. A few days before that, he clocked in at four in the morning, beginning our day earlier than usual.

When he does not sleep, my husband and I do not sleep too. “Cannot sleep” is probably the right operative phrase. We watch him, keep him safe, keep him company, and attend to all his needs. On days following Alphonse’ sleepless nights, while he greets the world with chirpy smiles and bouncy Tigger jumps, his parents turn into robots on automatic pilot, with not much of an active intelligence. What gets us through the day, I really don’t know; we just do. Perhaps it’s the same thing that got us through more than five years of violence and aggression in our home- sheer grit.

On nights when Alphonse keeps us awake, I imagine a safe place for him inside our home. I imagine a room where the walls are safe, strong, and padded, where comfy furniture without hard edges allow him unrestricted movement without worry, where he has plenty of sturdy and safe toys to keep him company. As it is, our room (he shares our bedroom) is securely bolted from the inside to prevent him from wandering, some of the walls now have unsightly dents and marks from furniture slammed accidentally against them, and one wall of the wooden cabinets has a large hole where he kicked it from excitement.

Without this precious time for sleep, our house falls apart a little. And I think, so do we.

11 Responses to “Repost: Sleepless in Autism”

  1. Adi Cayaban March 15, 2012 at 1:34 pm #

    Pinky, why do you think this happens?

  2. Kittymama March 16, 2012 at 11:48 am #

    I have a few theories, Adi. One, is that above his disabilities, he IS a teenager, and with the teenage years comes the change in the timing of the release of melatonin in the brain. This event causes the shift in body clocks for most teenagers, making them sleep later and wake up later.

    Two, there have been studies to show that around half of persons with autism may have low stores of melatonin or release a significantly lower amount as compared to their abled counterparts. Perhaps, this accounts for the sleeplessness in many children. Even with supplementation, however, there are still kids who do not respond to the melatonin all the tme, indicationg some level of “resistance” to its effects. That, or they need higher levels to create the same response.

    Third, it might be wise to check on other conditions that cause this phenomenon- apnea, dental problems, and one of the most commonly overlooked,parasitic infection (worms).

    Beyond these three, Adi, I am also still looking for answers.🙂

  3. bbqweasel March 16, 2012 at 4:21 pm #

    I hope you find answers soon Pinky. I’m glad that Alphonse is feeling cheerful. Hang in there, with lots of coffee!

    • Kittymama March 19, 2012 at 10:19 am #

      Thank you, Pei! I’m having my second cup of coffee right now!🙂

  4. Adi Cayaban March 16, 2012 at 5:06 pm #

    Quite enlightening. The reason I asked is because my 5-year old son has these random although infrequent bouts of sleeplessness. I’ve heard of products containing melatonin which are available over-the-counter in the US. But I’m not sure if the sale is permitted or requires a prescription here.
    Thanks for the information. I hope Alphonse and all the members of your household get your much needed shut-eye.

    • Kittymama March 19, 2012 at 10:22 am #

      Adi, melatonin is sold over the counter at Healthy Options. There are kids’ chewables too. But it’s best to ask your doctor what dosage would work best for your son. It was our dev ped who recommended the melatonin for Alphonse. Alphonse takes 10 mg nightly, quite high, I know, since 3 mg is usually enough to knock a grown man to sleep. But the low dosage does not work on him.😦

      If you prefer Kirkman’s melatonin, you could also order chewable melatonin in 1 or 3 mg tablets, 100 tabs per bottle. We have an official distributor in the Philippines as well.

  5. ailialana March 18, 2012 at 7:26 am #

    ..hmmm…my young man has started to wake up again too…but he does seem to go back eventually…nothing worse than sleep deprivation…and running away…and sugar cravings and…I better stop now.

    • Kittymama March 19, 2012 at 10:24 am #

      It’s falling asleep that’s the hardest part for him, I think, but once he’s done it, he sleeps rather soundly. I hope your son’s wakeful episodes don’t last and I hope he sleeps again really fast. Coffee and cakes taste wonderful at 3 am, but I am gaining more weight!🙂

      • ailialana March 21, 2012 at 4:14 am #

        lolllll yes my son is the same…he has great difficulty getting over…hasn’t been too bad with waking up lately….it comes and goes!

  6. Mother Warrior March 26, 2012 at 3:33 am #

    I boy do Know the painful reality of not sleeping. We’ve been having sleep issues since July of 2011, we’ve tried everything under the sun and nothing seems to fix this issue. Melatonin (4mg) helps him go to sleep but it doesn’t keep him asleep, we’ve tried many homeopathic remedies, they work for a few days, weeks, and then back to square one. I’ve tried supplements like a combo of : melatonin, GABA, L Theanine, and 5HTP this worked for about a week and then awake for hours at night again. I’m pregnant (20 weeks) with our surprise 3rd and I’m just pulling my hair out wondering how nights will be with a newborn breast feeding and Alex (5 yrs old) awake stimming at night. We’re currently doing CEASE to detox from vaccines which has given us great healing and improvement but this sleep issue just won’t budge. If u ever figure this mistery out please tell!

    • Kittymama April 11, 2012 at 11:17 am #

      It’s a really big mystery why they can’t sleep well, and for us, a new experience as well. We never used to have sleep issues until late 2010.😦 It’s important to tire Alex out, to give him lots of physical activity to spend his energies on. That seems to work for my son, so we make sure he gets lots of those. And if you can get someone to help you out on the late nights (or really early mornings) to keep Alex preoccupied, that would be helpful too. After all, you need to stock up on sleep before the baby comes.
      I wish you well on your pregnancy and will pray that Alex gets more sleep. Hang there, Mother Warrior!

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