ASD Recovery Six-Month Review: Sleeping

My last post, about my sleeping, alarmed folks. I received a number of concerned messages from friends and family. Even a phone call from my brother-in-law, who lives 5,000 miles away and wanted to tell me everything will be all right. Thank you, readers. I know that everything will be all right. And in fact, following through on my plans to get myself more rest just like I tackle Martin’s needs, I slept eight hours last night. Eight hours!

In celebration, I’m going to post about sleep again. Martin’s sleep, that is.

It was late January/early February 2011 when Adrian and I changed our plans for Martin and decided to treat his autism biomedically. From that point we needed about a month to get up and running—to convert his diet, to locate and visit a Track Two doctor, to find a professional to guide us through recovery.

That means we’ve been at this for about six months. I think now is an appropriate time to review how far we’ve come and to acknowledge what we still need to work on. I’ve divided Martin’s development into five areas: sleep, physicality, language, attention, and behavior. Over the next five days I will post about each of these areas, beginning with sleep, which is where we saw the fastest and most dramatic change.

Sleep was an issue from very early in Martin’s life. At about seven months old he woke erratically and cried sporadically throughout the night. I remember one particularly devastating week when Adrian was in Europe, six hours ahead of New York, on business. He was trying to concentrate on morning meetings while receiving middle-of-the-night emails from me, two and three per hour, complaining that Martin was up again, that I hadn’t even fallen back asleep since the last time. As soon as Adrian returned from that trip, we “sleep trained” Martin, using the Dr. Weissbluth method. The sleep training was tough (more specifically, tough love), but we got Martin sleeping through the night.

The success was short-lived. Not long after his first birthday, Martin developed even more severe sleeping problems. He became unable to settle himself, rustling about for 90 or even 120 minutes before he could fall asleep, then waking during the night or very early in the morning. Back then Martin slept in a large oval-shaped crib. When he started walking, he would rest his hand on the crib’s rail and run, around and around and around the crib’s interior until he dropped from exhaustion.

Once Martin moved to a toddler bed, the best chance we had was to restrain him physically. Either Adrian or I would sit next to the bed and pin Martin’s ankles to the sheets, to prevent him from goose-stepping in place. Martin would respond by thrusting his arms into the air until we held them down as well. Thus confined, Martin would flap his hands, wiggle his fingers, roll his head from side to side. He had to move. When he finally slept, it was in an odd position, often bent, his face pressed into the mattress and his backside aloft like a mountain peak.

The Big Imposing Hospital misdiagnosed this as “restless leg syndrome” and put Martin on iron supplements that stained his teeth. When the sleeping trouble continued unabated, they conducted an overnight sleep study, wired him up with brainwave sensors and breathing monitors. They found nothing.

By January 2011 Martin took one-to-two hours to fall asleep and most nights was awake, restless, for a three-to-four-hour window sometime between midnight and 6:00 a.m. On average, he slept through the night only once or twice each week, and in those instances he awoke at 5:00 or 6:00 a.m., unable to sleep again. Daytime naps didn’t help the situation; napping gave him the energy to keep himself awake even longer at night, sometimes until 11:00 p.m. or later. (His bedtime generally has been, and remains, 7:00 p.m.) We tried a weighted blanket, to no avail. He spent his days in bleary-eyed misery.

Almost as soon as we eliminated carbs (and sugar, and starch, and most everything else delectable) from Martin’s diet and added supplements, he began to sleep. As of late March, just for or five weeks into his recovery, Martin was falling asleep in 45 minutes or less and sleeping eleven-to-twelve hours through the night, five or six days a week. We still dealt with night waking one or two days a week, but the compulsive pitching about the bed ceased. Instead, Martin either lay still and chatted to himself or else laughed and acted drunk from his body detoxing.

As of today we more or less count on Martin sleeping through the night. If you’ve been reading this blog regularly, you know that we still have bad nights, and that we sometimes have two or three bad nights in succession, almost always related to Martin lumbering through a detox phase. But by and large, he falls asleep, and he stays asleep.

The quality of the rest has changed, too. He used to continue moving throughout the night. His head would be at the foot of the bed, then hanging off the side, then wedged against the headboard. Attempting to keep him covered was a fruitless endeavor. Now his head stays on the pillow, or at least in its vicinity.

Is there room for improvement? Always. I’m looking forward to the day when the detox nights end, so you don’t have to read posts like yesterday’s. I would like it if we could reduce Martin’s fall-asleep time to 15 minutes or less. And I’m sorry that we can’t allow Martin to nap. There are days when he looks like he could use an hour or two zonked out at midday. Can’t happen, though. Even a 30-minute nap keeps him awake until late into the night, and we lose precious hours of sleep.

Martin’s sleep is good, and getting better. My sleep is miserable, but hope springs eternal.

6 thoughts on “ASD Recovery Six-Month Review: Sleeping

  1. I really relate to that phenomenon–when you write honestly, in the moment, about how hard things are, people in the light of day might see you as sounding very much on the edge. I feel like that happens to me all the time. And the truth is I think everyone would sound insane if they spoke/wrote as openly, but most don’t. It’s too bad. The “Are you okay?” reactions–as sympathetic and well-meaning as they are–can serve to deter you from continued brutal honesty. I hope in your case they don’t.

    (Oh, re: sleep –this sounds painful. Truly painful. I found it so tough how my little guy would FULL-BODY LUNG SCREAM for up to 2 hours and 45 minutes in the middle of the night. The doctor said it would never last more than 1.5 hours. I’d be watching the L word on on demand with my hands over my ears crying.

    • Funny that—sometimes I read my own posts in the light of day and ask myself, What were you thinking? Are you going to be okay? But as I’m sure you experience as well, that’s what having an ASD child amounts to: ups and downs, despair and joy. A wild ride between “I’ve got this under control” and “No, I can’t hold out another day.” I don’t want to give up any bit of honesty in my posts. But I suppose I could do a better job of not writing the posts between midnight and 1:00 a.m., which is rarely my “happy, enthusiastic” time.

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