Our three-year-old son is diagnosed as moderate to severe on the autism spectrum. Many of his sensitivities, rigidities, and behavioural issues have led me to believe that he is profoundly impacted. Some people would describe their child’s autism as a “different ability”. I describe my son’s autism as a disability. It can hijack his central nervous system and steal his joys. Not every day is a bad day though, we have many, many phenomenal days! But the hard ones are so hard. And the peaks and valleys often feel like a rollercoaster ride you didn’t buy a ticket to, didn’t want to get on, don’t want to stay on, and has no end in sight. Perhaps we’re just in a hard season of autism, it’s hard to know anything for certain. All we can do is hope that all of his high-quality early intervention therapies can help shift the needle left of centre.
One of the things Aidan battles the most with, is sleep. He still sleeps like a newborn to some extent. He wakes frequently, and without the ability to self-soothe, needs input from mom to fall back asleep. Sometimes, it’s just a cuddle. Sometimes, it requires a bottle. Sometimes, I need to wait out whatever behaviour is in play and keep him on the bed until he falls asleep again. With his waking so frequently each night, you’re never sure what you’re going to get, so you have to be prepared for anything as far as possible.
My bedtime setup for Aidan has been specific from day one. We used to have four cats, so I would keep them out of his sleeping areas, and put a new towel and blanket down each night just before bedtime, to ensure he was kept away from any cat hair or dander overnight. I’d make sure his head was always raised using a wedge pillow to combat his silent reflux. And when he began co-sleeping on the bed with me, I’d arrange an elaborate pillow fort to keep him safe from rolling off the side. Back when he was still drinking bottles frequently, I’d pre-prepare six of them and mix in any medications he needed to take at the time. If it was pain meds, I would alternate the bottles, one plain, one medicated, to space the small dosages out. Also on the bedside table were his saline/medicated nose drops for overnight congestion, a mixture of Epimax and cortisone creams for his eczema, extra Calpol syrup for pain or fever, mosquito repellent cream, and antihistamine cream in case he got bitten by one. One of the things that keeps Aidan awake is itchiness, which is why there are so many lotions to hand. I also always kept a spare towel, blanket, wet wipes, and set of new pyjamas under the table in case behaviours or illness led to vomiting in the middle of the night. All of these items had to be within easy reach, because it wasn’t safe to leave Aidan alone on the bed in some kind of distress in the darkness. I’ve done this setup for him every night for over three years, 15 minutes before putting him down to sleep.
Preparedness is one thing. But battling sleep deprivation is another thing entirely. Aidan doesn’t seem to be physically affected by lack of sleep unless it’s been a really bad night of long hours of wakefulness. But this mama sure is! I cope with as many wakings as I can, as efficiently and quietly as I can, but if it’s a truly horrible night, I’ll wake my husband to help me. Particularly, if a suppository needs to be administered for fever, which I always keep pre-cut in Vaseline on the compactum, because Aidan will fight it with the force of a thousand suns – even at 3 o’clock in the morning.
I used to try and grab a couple of extra hours sleep in the mornings once I’d gotten him up, dressed, and handed over to his therapist for the day, but that wasn’t always possible. I am a contract worker, and do stints of a few months long as a copywriter and proofreader. So I have to be up, caffeinated, and uber productive by 08:30 in the morning sometimes, regardless of the night we’ve had. I also get up with Aidan if he’s unwell, because he’s a lot to handle when his mood is low, and I like to be on hand to help if needed. I particularly find it hard to sleep-in in the summer, because my body doesn’t allow me to sleep when the sun’s out. So being sleep deprived is pretty normal for me, and I’ve learned to function on a lot less sleep than the average person!
I always say that being woken by Aidan for an hour or two in the middle of the night, is far better than being woken up frequently throughout, and I think that’s because it takes quite a lot out of me physically to keep fighting to become conscious, and to be able to make considered decisions on and off through the night. Some days can honestly feel like a blur, and I’m the very definition of a Mombie! I often spend the first few hours of my day nursing a huge coffee and still in my pyjamas, but thankfully, since COVID, this is far more socially acceptable than it used to be!
I’d love to hear more about how other special needs parents cope with sleep disruption. I feel sure we can give each other some tips and tricks! Let’s discuss this more in our Forum – all of your shares are so valuable to our community!
