Sleep. SLEEP. MAGNIFICENT SLEEP! I wish there was some job at which I got paid to just sleep because man, I’d be their best employee. However, I happen to be the mother of a child with both Down syndrome and autism. Sleep is fleeting and inconsistent. Even though my son takes a lovely combination of sleep medications prescribed by his psychiatrist, they appear to be losing their effectiveness.
So here we are. At 3:09 in the morning. I’ve been awake with Jack since about 1:30 am. In that time, he’s taken a shower/bath, complete with bubbles. He’s gotten a fresh, dry diaper. He’s had a cup of PediaSure. And he’s requested SpongeBob on the living room TV, the movie “Up” playing on the playroom TV, while simultaneously listening to his headphones with a playlist containing music by Flo-Rida and Shakira. If you’ve got a child who doesn’t have Down syndrome or autism, you will immediately judge me as doing it aaaaall wrong. ‘No, Tammy–you should dim the lights, read him a bedtime book, softly sing him to sleep, gently rock him in a rocking chair. You need to provide him with a calming atmosphere in order to coax him back to sleep.’ Okay, that’s HILARIOUS. Those are the types of things you do when you have a newborn or a toddler. My son is 7 years-old and his hyperactivity is off-the-charts. He can’t sit still for a single page of a bedtime story, let alone an entire book. Sing him to sleep? Are you nuts? This kid is WIDE awake. We’re soooo far beyond “coaxing” him back to sleep with a lullaby. He’s in the middle of stimming to “The Campfire Song Song” from SpongeBob (Yes, that’s seriously the title of the song and if you heard it, wow. It’s like the song equivalent of 10 cups of coffee.) In fact, I have a real treat for you. I’ve now uploaded The Campfire Song Song for your enjoyment! You’re welcome!
The only thing that is going to get this kid back to sleep is his doctor-prescribed sleep medication. But usually it doesn’t take an hour and a half to kick in. Usually within 30 minutes he’s asking to go “ba” (bed). Not tonight!
So at long last–at 3:09 am–he finally asked to go “ba”. This extra time awake has afforded me the opportunity to do 2 loads of laundry. Now I’m even more exhausted about the prospect of having to fold it all tomorrow in my OCD manner of clothes-folding.
My situation is so unbelievably far from unique. I think if you asked a group of parents with autistic children what their #1 complaint would be, the majority would say “lack of sleep”. Some of these children, for whatever reason, can function on 3 or 4 hours of sleep a night. Sometimes less! And some of them (my son included) are extremely hyperactive, despite only getting a few hours of shut-eye. That’s something you anticipate when you have a newborn, NOT when you have a 7 year-old.
So now I’m wide awake. After giving him a bath, getting him dried off and dressed, getting him milk, putting on his favorite shows, and doing 2 loads of laundry. Not surprising. I need to lie down anyway or just doze off in front of the TV because Jack’s going to be up again in a few hours, ready to go for the rest of the day! And before you ask me if he’ll take a nap later on in the day, is there some sort of “NCIS Dope Slap/Are you insane?!”-emoticon that I can insert here? Because Jack does not nap. Ever.
Most autism moms survive on coffee. If they could go to Dunkins and get it in IV form, they would. Me? I’m caffeine-free. I don’t like coffee, but I have a penchant for Frappuccinos. But did you know that Frappuccinos have loads of calories? Shocking, I know. So I skip Starbucks. I could drink a 2 liter bottle of Coke a day, but again, tons of calories. Who knew? And Diet Coke or Diet Pepsi? Oh please. That’s hardly an adequate substitute in my book. I don’t care that they’re chemical-laden; I just think they taste disgusting. So when Jack goes to school I go right back to bed. I know that’s a luxury that most moms in my situation don’t have. Either they work or they have other children to care for. But given the sheer number of diagnoses that Jack has, I don’t exactly feel all that guilty. Because I’m not your average mom. I’m not even your average autism mom. Jack is a medically complicated kid, outside of the fact that he has Down syndrome and autism. And so instead of coffee, I sleep. With absolutely no end in sight to Jack’s erratic sleep patterns, I sleep whenever I can. And I’m incredibly fortunate to have an amazing husband who will take over on the weekends and let me sleep during the day if Jack’s been up for most of the night.
Oh, the life of an autism mom . . .