Tidings of Comfort and Joy

The first time she ever talked to me, really talked to me, was from under the covers, in the midst of our bedtime ritual. Hairwashing and teethbrushing and pajamas and stories. Bantering and bargaining with her sister. She started to sing a Christmas song but the words were her own. She was using the holiday melody to help move her thoughts, which so often get stuck inside the complicated gears of her mind, to tell me that she loved me and wanted me to stay with her. And for the first time in 4 years I felt noticed, needed.

Autism has many tells. Sensory sensitivities and rigid thought patterns. Self-stimulating behaviors, repetitiveness, social delays, gastrointestinal issues and sleep disorders. We see these in varying degrees on a daily basis but, thankfully, sleep is not a problem for our eldest daughter. She goes to bed relatively easily and would sleep soundly until late morning everyday if it weren’t for the clamor of siblings.

'Thankfully' because bedtime in our home is essentially a series of battles fought upstairs and down. My husband and I become negotiators, defenders of "Eight PM", explaining the meaning and importance of sleep to three small people who want nothing to do with it. It is like this for the better part of an hour; pure folly. But once everything that needs to be cleaned has been cleaned, once the last bottle has been served and the last story read, once everyone has found their usual place, surrounded by their soft items of comfort; a quiet settles over our home.

They often fall asleep in our bed. It has become our ace in the hole when standard practice fails: the offer to sleep in our room. They follow the same routines, but then crawl up and into our bed, bury themselves in the layers of pillows, sheets, and comforter. Cotton and down. Bliss.

They settle quickly this way. The happiness of this reward must be overwhelming and they are a precious mess of dangling arms and legs in no time. It is the perfect ending to a typically long and wonderful day, filled with the big emotions that characterize motherhood’s highs and lows and in-betweens.

Hours later, wrapped loosely around us, we carry them to their room and plant them in the coolness of their unopened beds. Their breathing is heavy and reliable. The same. You couldn’t tell neurotypical from anything. Autism is nowhere to be found.

I take great comfort in this. Sleep is the great equalizer. On good days it is the peace she deserves. On bad days, it is the reminder that we get to start over tomorrow, that change and adjustments are possible. When she sleeps, her body is still and calm and full of rich and vibrant dreams. Nothing is being measured or recorded. No prompting for attention or eye contact. No 3 part directions to follow. When she sleeps I imagine her taking apart the confusing structure of her time in our world and piecing it all back together in a shape that makes more sense. She’s just like anyone else when she is sleeping, no tics or tells. No IEPs or 504s, no social goals or gaps to close. Indiscernible.

And I am just her mother, without concern or special needs to attend to. Without the weight of disorder. I get to remember what it is to just love her, simply and beautifully, not because of or in spite of. Just: love her. For who she is and for who I am. A mother, a daughter, a wife, a sister, a woman, a girl…

Just people, navigating a vast and often perplexing world, trying to pinpoint what is positive and meaningful, trying to keep these things whole even as we acclimate to the tepid waters of disability. Trying to construct something useful with the pieces that don’t quite fit. Taking comfort in the hours of rest that are promised when the sun goes down, our daily bread, our dependence on tomorrow and another chance to take a few steps forward.