It was 4 a.m. and my son J was still awake. This was the third such night in a row and I was exhausted. You know the kind of tired that feels like your head is stuffed with cotton wool? The saying, “It’s always darkest before the dawn,” is true. Things get crazy after 1 a.m., but that 2-5 a.m. window is something else when you’re a mama with a special-needs child who struggles to sleep.
My productive thoughts crawled along at five per hour, while despair and anxiety raced through me. I wasn’t technically alone since J’s dad and our other kids were home, asleep. Many fathers seem to have a default kids-go-to-mother-for-care switch. Being off duty shielded him from feeling under siege and exhausted, as I did. My husband’s snoring amplified the dark chatter in my head. Still, I wouldn’t dream of waking a supportive friend with a phone call.
That night was seven years ago when J was 13. Puberty plus autism spectrum disorder (ASD) is autism on steroids. Obsessive-compulsive disorder (OCD), digestive issues, aggression, impulse control issues — all common with autism —were off the charts. When he began having trouble falling asleep, he just carried on as though midnight was midday. Someone had to make sure his energy, incredible attention to detail and amazing persistence didn’t lead to trouble, like the time he somehow got out through the window and went rummaging through the stuff on a neighbor’s deck.
That someone was me, feeling sucked, at 4 a.m., into a black hole of despair:
I can’t keep this up night after night.
There’s no escape from this that makes sense.
What will happen when he’s 35?
His brother and sister won’t want to care for him when I’m gone.
This was 11 years after J’s diagnosis, and I felt stuck. Discovering what therapies worked was like finding out what Lotto numbers were going to hit, but not being able to buy a ticket. The interventions that really help cost an arm and a leg, and we didn’t have it. Somehow, in my head, not finding solutions we could afford made my son’s challenges my fault. So, too, did the unsolicited advice I received from well-meaning friends and family: “It’s the way you are parenting.” “God is sending a message.” “The technique in [fill in the blank] article or video I found will fix things.”
My compassionate sister-friends didn’t know how to support me or what to say. Playdates with their kids seemed out of the question. And frankly, their complaints about their children who talked too much or had too many friends just got on my nerves, since my own child struggled to verbalize and socialize.
I grew up finding solace in church, like many of Afro-Caribbean descent. I’m so grateful to my grandmother for that. But in recent years, church hadn’t felt like a sanctuary. J’s chirpy yell of “hello!” during prayer filled my heart with joy. He’s talking! Trying to connect socially! But the middle of the service wasn’t the time. His speech and my quiet celebration of that speech (it was all over my face) was met with frowns. I hustled him out to quell the disturbance. It’s hard to get comfort from church when you don’t go. And going became too hard.
One night, around 2:00 a.m., I saw a Facebook post:
“We’re having an awful night. Anyone else awake? Is it just us?”
What followed was an endless stream of comments from mostly moms talking about being awake with ASD kids. The reasons ranged from heartrending to hilarious, and the proposed solutions ran the gamut from practical to holistic to irreverent. It was amazing! Here was a space where we could be seen and understood, be heard and not critiqued and could connect.
I started to notice these moments more and more and even created some of my own. I remember being on the phone with a mom from Trinidad. Her son is younger than mine, and his curious mind had him setting fires (literally) as often as he could. We spent hours discussing his needs and brainstorming innovative, safe ways to meet them. As we talked, she opened up about the deep longing she had to see her son thrive and to feel free and happy and at peace herself. It felt fantastic to connect with another woman who was walking the same path.
Psychologists say that having meaningful human connection is a basic human need. When basic needs aren’t met, it can get very dark. I realized that while I couldn’t change my son’s autism, I could change the alienation that I, and others in the same boat, suffered. Sometimes I’d create my own ‘who’s awake?’ Facebook posts or privately check in with a few women. We’d share pain, joy, life moments and understanding.
And sometimes, as I would sit with J, massaging his feet and willing him to sleep, I would think of another, unknown mom who was up with her child. Maybe she was at the end of her rope, struggling to push the darkness back. For a few moments, I would forget how tired I was and sink fully into her experience, mentally holding her hand and praying for her. I’d tell her, it’s ok. I know it feels impossible. I’m here. You can do it. We can do it together.
That spiritual calling led me to eventually grow those informal connections into a structured space for support. I began blogging. As J got older, I became a life coach for women who are newer to navigating the complex life of a sleep-deprived, special-needs mama.
My son is 20 now. The question, “how’s J doing?” is always hard to answer. He still lives with OCD, impulsive behavior and sensory processing issues and has limited spoken language. On the other hand, we found out he can spell out his thoughts, and we are helping him to slowly express more complex ideas and share who he truly is. Two very special sitters, an occupational therapist, my husband and J’s teen siblings are there for support. There isn't an easy day anywhere. But we have hope. And we have our village around us.
Simone Martin-Newberry