Muslimah Next Door
Ali Family Autism Truths #8 – April 8, 2016
At 5:30 a.m., my phone rang. Or rather, it vibrated on the nightstand next to my bed. When I woke out of deep sleep to its hum and grabbed it, bleary eyed, I saw that it was my mother-in-law, calling from downstairs (where their bedroom is).
I began to panic. With my father-in-law home from the hospital seven days ago after his triple bypass surgery, and with them sleeping by themselves downstairs the past three days, the rule was that they should call and wake us up if anything was amiss with my father-in-law.
I quickly called back.
Is everything ok? I asked.
Ha beta. (Yes, dear.) D has been up since 4:30 a.m. and came downstairs to where we are. He seems sleepy now. Maybe you should take him back to his room?
I breathed a sigh of relief, then got out of bed and went downstairs.
D came up willingly with me and got into bed and under his covers. I gently reprimanded him to go back to sleep, as it was too early to wake up. Or, just please stay in his room. Then I lumbered back to my room and fell back asleep. I don’t like to sleep when he is awake, not knowing what he may get into, or if he may go downstairs and eat things he really shouldn’t be eating. Or the worst – open the locks and wander outside. (He hasn’t done that in a few years, but once your kid does something like that a few times, the fear never leaves you.)
But the past few days had been rather exhausting, between work, the kids’ drop offs and pickups from school, my father-in-law’s appointments and care (which was more so being managed by my mother-in-law) and a thousand other things. That night I slept more deeply than I ever do. And, when I woke again an hour later, D was back downstairs, his mouth stuffed with rice from rice cooker and bits of rice all over the floor.
And here we are now, 9 p.m. at night, and you wouldn’t know to look at him that he has been up since 4:30 a.m., and that the day and night before this one was fraught with anxiety, tears and meltdowns — ending with me getting in bed with D after feeding him a second meal at 11 pm, and both of us falling asleep somewhere between midnight and 1 a.m.
D and sleep are uneasy partners. It’s that way for a fair number of people with autism. For various neurological, medical and other unknown reasons, sleep can be elusive, broken and downright seemingly unnecessary. And so, when you think the night-time awakenings and sleep battles will end when your child grows past the toddler phase — that may very much not be the case with autistic kids or adults.
Certainly I’ve spent more nights then I can remember trying to soothe D to sleep, or holding my breath that he does not wake up (because he’ll never fall back asleep). When we lived in small apartments and shared bedroom, the struggle was really real. Any noise would wake him. Try a situation where parents, an infant and an autistic three or four-year-old share a bedroom. Yeah. Not easy.
And so although we are here now, with a much better handle on D’s sleep, with supports and other things in place to help him get into a sleepy-mode, with much better knowledge of what makes him anxious, what riles him up and what can help bring some peace – it’s still hit or miss.
Some nights are full of anxiety and tears, when all I can do is be present with him, not touching him or getting too close, because my touch is irritating to his sensory-laden body. Other nights he’ll allow me to lie next to him, the warmth of me nearby acting as a soother. And, more nights than others, he will drift off to sleep on his own after following a structured bedtime routine.
It’s funny, the things in life that become so important and meaningful to you when you realize how elusive or difficult they can be. Your health. Your peace of mind. Your happiness. Your relationships and love given to and received from others.
Your sleep.
The truth is, nothing in this world matters more than a rested mind and body. May D have that. May we all.
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