Raising a child with an autism spectrum disorder (ASD) can be exhausting, which has the potential to impact on parental health and well-being…child behavior difficulties may contribute to parental fatigue, which in turn may influence use of ineffective coping strategies and increased stress. The significance of fatigue on maternal wellbeing was highlighted as an important area for consideration in families of children with an ASD. (Journal of Autism and Developmental Disorders July 2013, Volume 43, Issue 7)
The house is quiet. I sip on a cup of hot tea and enjoy the silence.
Before heading up to bed, I glance at the clock on the microwave: Midnight. As I approach the bottom of the stairs, I hear Jack’s door open.
He pads down the hall toward our bedroom. I stay quiet downstairs, clinching the cup of tea in my hand, offering a silent prayer up to God. Jack walks to our bedroom. Jeff stirs, wakes, and carries him back down the hall. I hear the door click closed and exhale.
When I reach the landing outside our bedroom, I pause and take a deep breath. The glow of the TV radiates through the crack between the door and the floor.
“I’m sorry,” I whisper as I walk in. “I should have taken care of Jack. I was still awake.” My words are empty. I know it and Jeff knows it, but he tells me it’s ok, rolls over and goes back to sleep. I sink into my pillow. Try to silence dozens of worries plaguing my brain before exhaustion takes over and I fall asleep.
Two hours later, our bedroom door opens with a “thunk.” Jack stands in the doorway, groggy and disoriented. Jeff waves him in, and Jack lays between us. At 5:30am, Jeff’s alarm goes off. He gets dressed and ready to walk a mile to the train station before his 45-minute commute on the T. At the first sound of stirring Jack bolts upright, runs into Kristen’s room, hoists himself in her crib and begins jumping up and down as though he has been pumping sugar and caffeine intravenously for hours. She cries. I lay in bed, body heavy with fatigue.
Continuous bombardment with stressors, or a physiological inability to return to a normal resting baseline, lead to a chronic stress state of exhaustion and depletion of the body’s resources. (Raising a Sensory Smart Child, p. 294)
Jeff walks to Kristen’s room, lifts her out of bed and brings her to ours. She giggles, happy to see him, while Jack follows close behind, asking a reel of questions: “What’s your favorite color mommy? What’s your favorite car mommy? Does Kristen want to eat oatmeal? Daddy goes to work, will I see him at night? Do I want to go to school? Are you hungry? Has Daddy left for work? Will he come home at night? What’s your favorite color?” I roll out of bed, mumble “yeses” and “nos” and colors as I shuffle to the bathroom, brush my teeth, and get in the shower. I blast the hot water, hoping it will wake me from 4 years of fatigue and wash it down the drain.
I emerge from the shower slightly more awake, but the 4 years still weigh heavy.
In a flurry I then dress Kristen, fold laundry, wash diapers, make breakfast, clean dishes, put toys in buckets.
Jack sprawls on the floor yelling. “I DO want that toy! I DON’T want that toy! I DO want that toy! I DON’T want that toy!” I try to console him with a hug. “I DO want a hug! I DON’T want a hug! I DO want a hug! I DON’T want a hug.” He kicks and screams.
I leave his side to tend to Kristen who is unsettled by his yelling. I glance up at the clock. We need to leave in 10 minutes to make it to the first of 3 back-to-back therapies. I toss together snacks.
Where did I put the keys? I search under tables and chairs where I find hats and mittens. “It’s time to get dressed, Jack.”
“I DO want to get dressed! I DON’T want to get dressed! I DO want to get dressed!” I shove shirt, socks, pants, underwear, shoes on him.
Kristen toddles over to a toy barn and finds my keys hidden in the silo.
Good! Now, my phone. Where is my phone?
Running, searching frantically, I find it in the bathroom sink. Apparently, it seemed like a good idea to put it there when I shuffled to the shower.
Persistent sleep disturbances result in higher levels of stress hormones, irregular biorhythms, decreased attention and cognitive skills…the chronically tired child (and the overtired adults who live with him) is stressed out, irritable, spacey, and prone to illness. (Raising a Sensory Smart Child, p. 289)
I load the kids in the car. We tear out of the driveway to go to occupational therapy. From there we drive straight to social skills group where we drop Jack off before returning home for an hour. Kristen naps while I pay bills, fill out paperwork, email therapists, scrub dishes, wash, fold, dry laundry, return phone calls from specialists and doctors, empty the dishwasher, begin dinner prep. I wake Kristen from her nap. Groggily we both load up in the car to pick Jack up from group.
We rush back to the house. I put together more snacks, pack up again, and drive to speech therapy. The sun shifts in the sky, taunting me.
Home again, the witching hour begins. Tears, frustration, and exhaustion are at an all-time high. I cook dinner, try to drown out the yelling by clanking pots and dishes in the sink. I turn on the porch light, willing my husband to appear from his hour-long trek home. When he walks in the door, I throw children at him. He bathes them. I sit. Bury my head in my hands and wonder how many more years we can go without sleep. Maybe tonight’s the night, I tell myself, ever hopeful.
Kristen goes to bed while Jack runs laps in the hallway. Eventually, he goes into his room, rocks methodically and drifts off to sleep.
I brew tea.
Midnight. Jack wakes. I pray.
This is a snapshot of one day in the life of an autism mom. Some days go well, while others, like this one, feel like they will never end and exhaustion conquers hope. My sincere prayer is that by sharing this, it will open a conversation about the realities of what life as an autism parent is like, and engender hope and help among the Wonderfully Made community.
Here are a few ways others can help our family (and yours!) through sleep deprivation:
- Pray for us. Pray for patience. Pray for rest. Pray for strength.
- Offer. Don’t wait to be asked for help, trust that we need it and offer with an open heart and an open mind. Be willing to stretch just a bit to lend a helping hand – parents of children with autism are stretched every moment of every day. Offer to help with seemingly simple tasks – bring a meal, hold the baby, take Jack to the playground for an hour, watch the children so Jeff and I can get a cup of coffee together. Ordinary activities can feel overwhelming when exhausted, and this is further amplified when parents have a child with special needs.
- Listen. Just listen. Sometimes I just need a good cry. I’m so tired, worried, and feel buried under a mountain of tasks. I don’t want advice on how to handle my life better, how to organize my day better, how to manage my children better. I just want someone to listen to the things weighing heavy on my heart.
- Love. Love us as we are – tired, messy, and doing our very best to make it through each day with thanksgiving and hope. And encourage love between Jeff and me by offering to sit with the children so we can have one hour together out of the house. It is so very rare that parents of children with special needs get any time together, and yet it is so important.
If you could ask for one thing of a friend or a loved one to help you with through the difficulties of sleep deprivation, what would it be? Please include it in the comments below. Your thoughts and experiences help others!
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Post 1 – Encouragement for the Restless Heart
Post 2 – Sleepless in Atlanta
Post 4 – Understanding Sleep Deprivation
Post 5 – Sleepless Series Finale: Peace