Sleepless in Autism

4 Oct

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

In those few hours when the conscious mind voluntarily surrenders to rest, the whole world stops for the child and lets him be who he is. Young, carefree, untroubled, unburdened. Sleep lets him put his guard down. It removes his defenses from the world around him. And on those few hours of dormancy, he is simply a child. Sleep is the universe where there is no autism;  it does not exist. Yet, for many children with autism, sleep is often the one thing they miss out on the most.

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.

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8 Responses to “Sleepless in Autism”

  1. AC October 4, 2010 at 10:06 am #

    I feel your pain, Mama. 😄 Masakit matapakan at 2:15 in the morning.

    • Kittymama October 4, 2010 at 12:51 pm #

      I hope you continue to have patience, son, especially when he jumps on your bed while you are sleeping. 😦

  2. geri October 4, 2010 at 12:07 pm #

    The hardest thing for me during infant caring was no doubt the lack of sleep. I would rather sleep (which I couldn’t even if if Evan was sleeping because I am a light sleeper) than eat or do anything else. Lack of sleep not only puts you in a fog for months and months, on automatic pilot, not think clearly, forgetful, irritable but also can endanger yourself and your child (I remember a couple of times I almost made a wrong move while driving). That’s why I really feel for you when reading this. Perhaps, it won’t be long now when Alphonse goes back to his normal bedtime routine. Hugs.

    • Kittymama October 4, 2010 at 12:53 pm #

      Thank you for your kind thoughts and hugs, Geri. I really pray and hope that these are all temporary. 🙂

  3. Casdok October 4, 2010 at 3:08 pm #

    Its a tough one isnt it.
    Hugs

    • Kittymama October 14, 2010 at 6:40 pm #

      Thanks, I needed that. 🙂

  4. bless October 14, 2010 at 4:59 pm #

    hello, everytime i hear stories like yours i felt a sudden pain because i myself have a son whom i suspect of having autism. He is not formally diagnosed with that behavioral problem but all the indications and manifestations are there…he never rest from watching the same cartoon everyday, 24-7, his toys never last an hour…having trouble also communicating…i am 42 and he is 4 only…i know how it was to have insomnia..before i got pregnant i have a sleep problem, sometimes i dont sleep for days, i took my pills after 3 to 4 days…i dont want him to inherit that kind of sleeping problem because night time is the only time my husband and i can rest after a day of understanding and caring, a day full of questions on when this kind of situation will end…or hoping and hoping that my dear kareem will wake up oneday a ok like any other normal kid, i dont have resources to have him checked up by a doctor because my husband cannot help me financially because he has to take care of him so i am the only one who work…i am pleased to hear that i am not alone with this battle..with this struggle and i hope to gain more strength and peace knowing parents like you….god bless!

    • Kittymama October 14, 2010 at 6:40 pm #

      I hope that you and your husband stay strong for Kareem. Know that you are not alone; many other people share your concerns and fears. But have faith and continue to love your child. I will advice you to look for help where you can and ask for it however you can because you and your husband will need guidance on how best to help your child.

      God bless you too!

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