ASD Recovery Is Not a Big Bed of Roses. At Least Not One I Can Sleep In

Of all the facets of Martin’s recovery process, the most difficult for me has been my own exhaustion.

I’m exhausted because I just don’t sleep. There is so much to do, and I’m not the kind of person who can let it all go at 10:00 p.m. and doze off. I need seven-and-a-half hours’ sleep to feel rested. I can’t remember the last time I managed more than six. Most nights the total is closer to five. When work is busy it can dwindle to two or three.

Every couple weeks the sleeplessness catches up with me, and I feel myself toppling into depression. Tonight was such an evening. The apartment is a mess, I have three high-pressure projects for work, and Adrian has announced that he’s extra busy at the office and won’t be able to help out. Meanwhile, I am so tired that my attention span has faded to seconds. This evening I wandered from task to task, doing this and doing that and mysteriously finding nothing done, with a deep ache in my legs that means fatigue has infiltrated every muscle. With the fatigue comes desperation. When Adrian and Martin left the apartment for a short walk, I dropt onto the kitchen floor mat and slept for ten minutes amidst the wilted brussels sprout leaves and other accumulated dreck.

I committed to get a full night’s rest tonight, at least this one night. I left laundry stacked on the table, receipts scattered on the counter, and the guest room unmade, though guests are due tomorrow. I did not blog. I was in bed by 10:30 p.m. The iPad was off by 11:00.

It’s after 5:00 a.m. now. If you’ve been reading this blog, you may know enough to fill in the last six hours. The laundry, receipts, and guest room occupied my mind and erected a little barrier to sleep, which I was not able to cross until 12:19 a.m. or so. At least, 12:19 is the last time I remember glancing at the clock. At 2:02 a.m. Martin called me in a panic. Adrian went to him. I was able to sleep again until 2:42 a.m., when Adrian returned and said Martin was still awake, with detox symptoms. From 2:42 until 4:06 a.m. I lay in bed. I dozed a few minutes now and then, each time roused by Martin crying, “Mommy!” from his room. Martin stayed in his bed, so I resisted going to him. At 4:02 a.m. a mosquito bit me.

At 4:06 a.m. Martin became agitated and unable to settle himself. I gave up and brought the iPad to his room. Here I sit.

Best case scenario, Martin falls back to sleep within the next 15 minutes, say, by 5:30 a.m., and I am back to sleep myself by 6:00 a.m. Adrian has his alarm set for 7:00. I’ll get up then, too. Samara isn’t coming today—yesterday’s hurricane-cum-tropical storm flooded her basement, so she’s staying home to clean—and I will feel oblgated to get up at 7:00 and prepare everything for the substitute nanny who’s due by 10:00 a.m., plus make up the guest room.

I will have slept from 12:19-2:02 a.m., from approximately 2:10-2:42 a.m., some 20 or 30 minutes between 2:42 and 4:06 a.m., and from 6:00-7:00 a.m. Grand total, three hours and 15 minutes. This day, this day that begins in less than two hours, will be a stupor. I tell myself that I will nap, but I won’t. If I wrest half an hour from work and food preparation, I will put away laundry or try to deal with the downstairs linen closet, where Freddy the cat has been peeing.

When friends or acquaintances ask about Martin, I give one of two responses. If they don’t know Martin has autism, I say he’s “getting so big” and offer a milestone or two that most closely track neurotypicality, like how high he can count or what songs he can sing. If they know our situation, I speak enthusiastically (and not disingenuously) of the progress we’re making.

But I dream of responding the way I feel right now. Covering my head with my hands, collapsing, crying. Explaining, “It’s so hard. It’s just so hard. I don’t know how I can go on.”

That’s fantasy, of course. Drama. A scene that plays out much better in my head than it would in reality. I would get limited sympathy, and in the bigger picture, I deserve limited sympathy. I’ve already acknowledged that I have every advantage in the world when it comes to treating Martin. I don’t have to know the anguish of wanting to do more for Martin than I can afford. My health is good, and I can survive without much sleep, at least these few years hat recovery takes. Adrian helps when he can.

The hard truth is that sleeplessness is of my own doing. I’ve mastered most of what I have to do, so far, for Martin’s recovery. The exception is my own schedule. If I can only manage to attack my sleep schedule with the same ferocity as food, supplements, and exercises, I can improve the situation a lot.

So I’m going to sleep an hour until 7:00 a.m., then try to find the energy and clear-headedness to solve another problem. Stay tuned.

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9 thoughts on “ASD Recovery Is Not a Big Bed of Roses. At Least Not One I Can Sleep In

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  2. HOW THE HECK DO YOU SUPPOSE YOU DESERVE ONLY “LIMITED SYMPATHY”?????
    OK, that was the part that alarmed me! Please, try to give yourself a break! Having external resources does, of course, allow you to give your kid the very best care you can muster but it doesn’t furnish you, personally, with resources beyond even those of the superwoman that you are. You are human, and you need to sleep, and you will cry with too little sleep for too long, and most of the people I know of whom you might call in such a moment would have plenty of sympathy for you, including me. So lower your standards when you must (kinda funny coming from me, huh?), and call someone when you’re crying among the brussels sprouts on the floor. I bet you don’t lower your expectations, but it’ the best advice I can give you, so you should consider it.

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