don't drown in despair
Autism is like a vast ocean. You can’t help but gaze out in awe at its wondrous, overwhelming complexity while simultaneously contemplating its depths, its intricacies and what secrets lie below the surface that we haven’t even yet begun exposing. The hard parts of autism, often come like unrelenting ocean waves that can at times take your breath away. Usually a decrease in one difficulty gives rise to an increase in another, or perhaps it’s that once our children start progressing in one area, we choose to hyper-focus on another right away; either way, it seems like there is always at least one all-consuming difficult need at any given point in time.
For me, today, the prevailing difficulty is sleep. I have not slept well in a year and a half. Connor and I had the flu together a year and half ago and spent one week quarantined in the same room and since then, he has not gone back to sleeping in his own room or bed. This would not be so bad if my teeny tiny child didn’t sleep like a shark on a sugar high! He kicks, rolls, throws off the blankets and occasionally wakes up at completely unacceptable hours with the full intention of being awake for the day sometimes with accompanying requests for totally insane items like “green soda” (Sprite). We have tried all different types of reasoning and incentives to get him back into his room from re-decorating the entire room and moving the furniture, to offering rewards and tokens for time spent in his room. No matter what tactics we have tried, we cannot get him to spend an entire night sleeping in his bed.
Last night was one of his particularly difficult nights, where for whatever reason, he did not even fall asleep until after 11 PM after several requests to turn the fan on and off, to take off the blankets, to get a drink, for tickles, for hugs, etc. etc. It is on these nights where I miss being able to sleep with just my husband and not having to worry about Connor all night long. I laid there without showering, brushing my teeth or washing my face, feeling completely defeated and exhausted both physically and emotionally; wondering if I would ever get my child to go back to sleeping his bed, feeling guilty about how many nights I have had to sleep with my child over my husband, racking my brain for any type of reinforcement or environmental change I may have overlooked to get Connor back into his own room.
It took me until well after midnight to finally fall asleep myself only for Connor to wake up for the day at 4:30 AM. Now this was an exceptionally hard night for him, while he does require my presence to fall asleep each night, it is very uncommon that it takes him so long to fall asleep and that he also wakes up so early. Needless to say, when he got up at 4:30 I could hardly prop my eyes open. For a little bit, I allowed myself to lay there not ready to get up and start the morning routine just yet. Connor on the other hand was gung-ho to start his day and immediately started requesting “Momma’s hand” “get up” “tickles” “down stairs”, and anything else he could think of to get his point across that he was ready to get up and I better rise to the occasion. I went through the motions of the morning routine, prompting him to use the bathroom, pick out his clothes, ask him what he wants for breakfast, turn on PBS kids cartoons. Somewhere in the middle of the over-familiar mundane routine and my own wallowing sleep-deprived self pity, it hit me that I wasn't focusing on the positive. I was allowing the waves of despair to take me under. It really hit me when Connor came to me and said “It’s stuck” and when I asked “What’s stuck?” he responded back by saying “mouth” and pointing to his a tooth in the back of his mouth, and sure enough there was a piece of food stuck in his tooth. This trivial revelation that would so often be overlooked by others, stopped me in my tracks and bought tears to my eyes.
My son was using the contraction it’s! He was advocating for something that was bothering him and initiating a very specific request for help using the word stuck! When asked what was stuck he went even further to use both the verbalization “mouth” and a pointing gesture to further reiterate his needs! As the mother of a once non-verbal child whose greatest fear was how my son would get through life without any functional communication, a momma who has used PECS (a picture exchange communication system) to understand my child’s wants and needs, who has fought for two different AAC (augmentative and alternative communication) evaluations and ended up using two different AAC programs over the course of the past 4 years, a mom who didn't know if I would ever hear my child’s voice or if I would only be able to communicate through tablets and technology; this moment of my child asking for me to help him with food stuck in his tooth stopped me in my tracks. Years ago this very type of issue would have likely ended in both him and I crying out of frustration when he couldn't convey what was wrong and/ or I couldn't guess.
When I took it all in, it truly hit me how far my child has come and how lucky I am to hear his voice at all. I thought of how on this very same morning he had said “No, I don’t want waffle” when I asked him if he wanted his waffle and how lately when he's looking for our cats to play with at home he says “I want kitty cat Fargo, Where is she?”
I let go of my fatigue-induced misery and instead chose to really focus on all of Connor’s progress lately and ,just like that, it instantly shifted the mood for my entire day. I will give myself extra coffee and extra grace today and even though I am still very tired, and still searching for ideas and solutions to get my child to sleep in his own room; I will not hyper-focus all of my energy into that wave trying to crush me. I will keep my head up looking towards the horizon and focusing on the sun coming up over the possibilities that each day brings, even if it’s something as small as my child telling me that he has food stuck in his tooth.
2/22/2020 05:38:19 pm
Congratulations on making the TAFA organization a reality. Your writing, your ability to be vulnerable and your love is touching lives, building community and raising awareness. Please let us all know how we can embrace this important initiative, support your family and be a more accountable part of the village that we all benefit from! Your family is amazing!
3/17/2023 07:29:36 am
Thhank you for writing this
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