When I take my son to special needs programs around Westchester, I often hear autism parents quote a particular statistic – 70% of special needs couples break up. I’ve never been able to verify this – it might be more urban legend than reality. After all, on the flip side, I know plenty of special needs couples who are hanging together, finding a way to make their relationship work, keeping their connection going, in spite of the pressures.
Still, it’s no secret that raising an autistic child puts tremendous strain on a marriage. We are genetically programmed – it’s in our DNA – to push ourselves to exhaustion during the first months and years of our child’s life. We are totally immersed in attending to our baby’s every need. But we also know that, as our child grows up, that little person will eventually become less dependent.
Alan Winnikoff will be doing a virtual reading from Not Sleeping at the Warner Library on April 22, 7.00-8.00p.m.
A neuro-typical child by nature craves autonomy, even at an early age. It doesn’t make parenting any easier, of course. The road ahead is still enormously long and difficult. But it does shift things. Our lives change when we can start sleeping longer hours, when we no longer need to take our kid to the bathroom or dress them or bathe them. With a severely autistic child, however, that day may never arrive. Having a neuro-diverse child can feel like raising a perpetual toddler. The minute by minute, detailed care never ends.
Special needs parents are stretched to the limit. Pushing on like this, year after year, is not how we are programmed. It can be hard for these couples to find time for each other. And, sometimes, the marriage cracks.
My new novel, Not Sleeping, largely set in Westchester, explores a special needs marriage that collapses under the weight of this reality. What happens when one of the spouses simply decides the pressure is too much, too relentless, the sacrifices too great?
It’s easy to characterize walking away from a special needs marriage – or any marriage – as an act of supreme selfishness. After all, when one parent exits, the other is left to carry on. The person doing the leaving, however, may view it differently. They may rationalize their decision as nothing less than a matter of survival. We only have one life, after all.
I wanted to avoid passing judgment on my characters. I tried to show their lives from all sides. At times they rise to meet the moment. Other times, they appear deeply flawed. I also wanted to show that, while a neuro-diverse child impacts their lives in countless ways, it doesn’t define all that they are. This story is not a polemic about autism. There is much more to these characters. Special needs parents go on with their lives. They have careers. They seek romance. They have dreams.
I wanted to tell a story that is relatable and recognizable. Special needs parents have moments of incredible strength and determination. We also have doubt and weakness and regrets. We are no different than anyone else. We are human.
Not Sleeping is published this month – Autism Awareness Month – by Crowsnest Books.