Dear Addie,
I never realized how much I enjoyed sleep until I was an adult, no wait a mother, no no a mother of an autistic child - yeah that’s it.
We’re all tired.
It’s a type of tiredness that is completely like no other. Sometimes I wonder if we’re perhaps part of a wicked science experiment seeing just how little sleep we need to function on an American Ninja Warrior and MacGyver type scale of living. And action.
Now don’t mistake my just admitting I’m tired for some sort of regret for becoming a mother, because that is the farthest thing from the truth. I love being a mommy. Fact.
Now, where was I...
You don’t sleep naturally on your own. Something I didn’t even know was a thing until you were born! True story. I had heard and experienced insomnia myself, but this sleeplessness is a whole different category of no sleep.
Now here’s the fun part (insert sarcasm here) researchers don’t really have a definite answer as to why individuals with autism have such trouble sleeping. Mind-blowing right?! While I’m on the subject, there’s a lot of non-medical opinionated people that think they have the answers, but not every person with autism is the same, so you can see where I’m going with that one. While there’s a laundry list of suggestions to such, there’s not one easy reason and fix to it all. Remember you've literally had trouble sleeping since birth. Since birth. When babies sleep like 20 hours a day - you didn’t.
We’ve tried it all (OK maybe not everything, but certainly a lot of things.)
In the beginning, it was mommy needing to lay with you. Nothing like slowly sliding off your bed trying not to wake you, literally crawling out of your room hoping the floor didn’t creek like it was some mission impossible movie. Ah yes, the things we do for our kids.
Then there was Melatonin – Yes it worked for a while, but eventually lost its luster in being our knight and shining armor for sleep, gradually losing its effectiveness.
Different diets - don’t eat this, eat that. No difference. (For reference you eat actually a very balanced diet - so kudos to you baby girl.)
How about a holistic approach - rub this oil here, rub this one there. Well, you smelled good, but that’s about it.
You need more vitamins - you can’t swallow pills so everything has to be in a liquid and I don’t care what they say even fish oils that claim to not taste “fishy” are all lying. It’s been spit right back at me and you would’ve thought I was a fisherman from Deadliest Catch out at sea if you were within smelling distance. For reference I have no idea if fishermen actually smell like fish, I just imagine if you’re slinging fish all day - the odor may stick with ya. I don’t blame you on that one Ad.
CBD - I had high hopes for this one...and then nothing, literally nothing.
Now having said all that, it’s worth noting again that not every autistic individual is alike and we have fellow autism family friends that these things work wonders for, so it’s not to say they won’t work at all – this was just our unique experience.
The only thing that has even made a dent of difference for an extended period of time for us was the input of a good psychiatrist and medication.
Now I've also been on this journey long enough to realize that not everything works just on its own. I know you think I’m magic in most things of motherhood Ad, but there’s no magic fix here - it’s a group effort of multiple things.
Our medication route has been a saving grace for us on many levels in this journey, but with constant growth and hormones, it’s an insane game of trial & error and adjustments. This is when super-sleuthing leads us to realize we need more.
With a major growth spurt (I do wonder just how tall you are going to be, because I’m teetering dangerously on being the shortest one in our bunch, but I digress) sleep started to escape us and the medication dosage game began. Recently we tried increasing some meds while taking away others and it was a few months of sleepless chaos, but in all that we watched. It’s in these times we are also reminded of our patience. Lots and lots of patience is important here. We watched your mannerisms; your sensory self-care needs you were gravitating towards. In this, we noticed an increase in piling blankets on top of yourself, not just your body but your head. You were laying on hard surfaces (A.K.A. the top of your dresser) with weighted blankets. It seemed as though you were looking for deep pressure, compression if you will. And in our observation in doing these things we noticed sleep would find you in small doses, but the obvious suffocation worry was clearly an issue.
Time for google! Another thing I thought I’d never do in life type in the search engine “safe sleep compression for children.”
Now compression actions like squeezing or weighted vests and blankets are not a big secret to anyone on this journey. These types of things play a huge part in calming the nervous system. In fact, you can even find weighted blankets at Target nowadays. And guess what?! You don’t have to be autistic to reap the benefits from them! Just saying.
But you might be asking yourself, why do I like this deep pressure input that I get when I become Mt. Pile-Of-Blankets? Well here’s the deal my dear, it’s because the pressure you get from being at the bottom of that pile can help improve your calm, organization and your mood all by increasing endorphin levels (those are your happy Addie hormones-such as dopamine and serotonin), while slowing down involuntary functions related to stress and anxiety, such as heart rate - remember that’s the thumping in the middle of chest that Ms. Michelle taught us about in your Science lesson, and blood pressure, along with decreasing the stress hormone cortisol.
Fascinating right? All good things!
So, all this brings me to our latest partnership to medication for your sleeping needs - a compression sheet. Thank you, Google!
This has been a game-changer...at least for now.
A compression sheet slides all the way around the mattress, not the easiest to get on but it is way easier than changing crib sheets in my opinion! So it's not that bad. It's made out of a breathable lycra type material so it holds you tight, keeps you warm so no need for extra blankets - and it's worth mentioning again - it's breathable!
You are literally snug as a bug in a rug! And if I’m being honest it took a hot second to get used to having you sleeping with your head covered up the way, but as I said before… it’s breathable!
So, with trial-and-error medication, Google, patience, observation, and a compression sheet we are finally getting some extended dare I say normal stretches of sleep around here.
I’ll take it. If only, for now, I’ll take it.
Sweet dreams Addie.
Love,
Mom
Comments