How I’ve Learned to Accept the Dark Days of Autism
I know from the moment she gets up today, it’s going to be a dark day. Even though we had a great day yesterday — we visited with friends and she slept beautifully — the angry grunting and growling has given me my cue. I take her to the bathroom in silence, taking off her nighttime diaper that we didn’t need a few short weeks ago, and put her in panties. That’s how it goes with autism — two steps forward, one step back.
I bring her out to the living room, turning on her favorite cartoon on low. I crush her anti-anxiety medicine and autism medicine to a pulp and add it to a glass of warm milk. When I walk back in she grabs it greedily from my hand; no “thank you” today, even though her manners are usually flawless. I don’t push it, not today. I make it back to the kitchen, make coffee and start scrambling her eggs; I still hear the occasional grunt and growl. I ignore it; long ago I learned that days like this my voice or any extra noise only annoys her further. I bring her eggs in and set them on her table. I don’t even watch to see if she goes for them; I exit back to the kitchen, looking over my list of to-do things for the day. I scratch off almost everything, realizing we’re not leaving the house today and probably not even going outside because of the snow lightly floating down. I look over and realize with a sigh, despite her being aggravated today, I have to get some wash done. My laundry room is right next to the kitchen and my daughter hates the sound of the washer and dryer running. They’re top-of-the-line front loaders that I bought mostly for their quiet running cycles.
I hear a clang and bang that I’m familiar with; my child has thrown her bowl of eggs. I walk in to see; she actually ate the eggs before flinging the bowl. I pick it up and send her to her room; time-out is the only punishment I doll out. I don’t even raise my voice. Instead I whisper and say “to your room for throwing the bowl. That’s not nice. You can come out when you have stopped crying and get control of yourself.” She is throwing a tantrum and extremely angry with me, but she moves her butt and slams her bedroom door for good measure.
I make a second cup of coffee and sigh, as I take out my first load to fold out of the dryer. I think to myself about how restrained I am now and how calculating and strategic I’ve become at this strange game we play. Dark days are caused not only by autism, but sensory processing disorder (SPD) and anxiety and panic disorder. My child has this disastrous combination of a diagnosis. Today, I blame less on autism and more on SPD; it’s almost as if even the lights bother my girl today. The rumble of the furnace going on and off, the ringing of the telephone… every little thing can make today worse on her.
She’s told me before that dark days feel like her ears are going to explode and everything she hears sounds like screeching tires in her ears and on top of all that, her stomach aches and she’s nauseous and her head pounds. That’s a beautiful thing about my child — she is verbal. She was silent to the age of 3, but these days she almost nonstop talks. She’s good at describing how she’s feeling when she’s not stuck on repeat and talking in circles.
Today will go like many before us. I will stay silent most of the day. I will take great care to not make unnecessary noise or walk by her swiftly. I’ve learned passing her too fast can cause her to lash out at me; she says I whoosh by her and it scares her. I start putting away clothing in the drawers in nice neat stacks, and I smile.
Today I will get a chance to sit down and read a book. Even though she’s angry, she doesn’t want to be alone. She enjoys the company. So I sit on the couch and pick up my kindle. I will get lost in a romantic comedy and sit on my side of the couch. She flops her body next to me and leans against me. I lightly wrap my arm around her and squeeze her shoulder whispering, “I love you, GG.” She doesn’t say anything back, but she’s not growling or grunting at me. I smile because I’ve played the game well today. My girl has had time to calm down, and the medicine has started to work.
I look outside at the dark, cloudy sky and see the snow falling, and I smile. Years ago this day would have been a nightmare. I would be raising my voice trying to control her actions, and she would be raging right back at me. I would probably end up hurt and my house would be wrecked, throwing me into a deep depression. I think of how far we’ve come, how therapy and instruction from her occupational therapist has made today better. I learned what I can do and how to relax because I know the game plan.
Today is a dark day — literally and figuratively. I know just as the ground outside needs moisture, my child can also benefit from a down day. I know tomorrow will bring the sun and melt away a bit of the snow that’s stuck to the frozen ground. Tomorrow my child’s nerves will thaw and grunts and grows will make way for smiles and giggles. Tomorrow I will get a thank you and she will speak to me excitedly. She will happily climb up on the counter to help me stir her eggs, she will sloppily poor half of my coffee into her glass and act like a big girl sipping it with me as we share breakfast and decide what to do and where we will go.
I know what tomorrow will bring, so I can smile and accept today, not reading anymore into it than what it is. A down dark day, and I’m finally OK with it.
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.