Late Nights, a Mother’s Love, and the Lessons of Autism
January 31, 2020
Jennifer Caserta Priore
It was 3 o’clock in the morning. He was wide awake. Again.
Even in my groggy state, my mind and body swirled with nervous energy. I thought about the struggle I’d face when morning broke for the rest of the world and I was too exhausted to even manage what a “typical” family would, not to mention what we endure. In this wee small hour of the morning, the challenges felt so very big and insurmountable. And yet, in a few short hours, I knew I’d splash my face with cold water, get ready for work, and head off on my commute for the “normal” routine – completely aware that life was anything but “normal” and no matter how many people came in and out of my office, the loneliness was part of my existence.
As Mom to Drew, who has Autism Spectrum Disorder, sleep deprivation was just one slice of life, albeit one that compounded the impact of every other stress. There are unexpected and numerous anxieties that come with raising a child who has special needs: how will he do today? How can I better manage that behavior? What do w
e need to do to help him communicate to whatever capacity he has? Is our house secured well enough to keep him safe? What happens to him if something happens to us?
And…will I ever sleep again?!
I lived in a state of hypervigilance for so long that I nearly forgot what it felt like to be in my more natural state of being. And although actively learning anything at that time sounds like a far-fetched fantasy, somehow I ended up enlightened to one of life’s greatest lessons: that it’s okay to depend on others.
As a mom who felt she could do it all, I never could have imagined that I’d one day live by that philosophy. On the contrary, like most new parents, I wanted to believe I could be all things to my children. I’ve noticed that from the moment we discover we’re bringing children into the world, our egos tend to kick into high gear. At least that’s what happened to me. Although not rooted in reality, I believed I had my own playbook based on the maternal instincts I felt so deeply. I had the answers. I had the energy. I could handle whatever was thrown my way. I knew what was best for my family. And I could manage it all, because in my mind, that’s what good moms (and dads) do.
And then, as it became clear that Drew had special needs, I realized there WAS no playbook. And even if there was, it was not one that my husband Anthony and I could read on our own. We needed a group to take us through each chapter.
As the years went on, we found that group in Anderson Center for Autism, a residential program designed to optimize Drew’s quality of life. The decision to pursue enrollment for Drew was almost as painful as dropping him off there for the first time. It’s a devastating situation for parents like us, and yet we really had no choice when we realized we’d come to a point where we could not possibly provide our son with the same opportunities that Anderson could.
Amidst the sadness, however, was that revelation that was quite beautiful and has since shaped our lives: none of us have to ‘go it alone’ in this world. There are always people to help us through all kinds of unique hardships and circumstances. And if we made ourselves vulnerable to letting them in, enabling them to become part of our own family circle, not only could they optimize Drew’s quality of life, but they could optimize ours as well.
And the quality of life for all of us is far better as a result. I’ve seen it in my conversations with Matthew Dean, a nurse at Anderson, with whom I communicate closely when Drew is ill since he cannot speak for himself. We talk about the cues we need to watch for so that we can address what Drew might be experiencing, whether it’s a toothache or an allergy. We collaborate. I see it in our relationships with the direct support professionals, like Sasha Frazier and Bryan Geter, whose wonderful combination of enthusiasm, love, and support comes to life through Drew’s smile. We work together on defining goals for Drew and actively listen in our exchange of observations. I see it in the moments when Drew seems so pleased to be in the presence of all of us at once.
Drew recently came home for the holiday, a more extended period of time than our usual weekends together. When I took him back to Anderson, they welcomed him as if it were a party. He felt their love. And so did I. They asked questions about whether his recent progress had carried over to home life: “Did he use his utensils?”, “How did the toileting go?”, and all of the other inquiries a parent might typically put out there after some time away. As I responded, they listened intently as any loving parent would. Indeed, they play a parental role of sorts, and I couldn’t feel more fortunate. Neither could my son. On that very day, in fact, there was so much joy radiating from each of them that Drew began to jump around with excitement.
As his beautiful smile spread across his face, so too did a smile spread across mine. His circle is far bigger than just our family now. We depend on this wonderful group of people for their wisdom, advice, and experience. They, likewise, depend on us for the unmatched love and expertise we bring to conversations that are “all things Drew”. There’s a mutual respect, admiration, and a sense that being dependent on others is a gift. We’re all better for it.
And for me, it comes with an added bonus: good sleep. And that, of course, makes everything infinitely more wonderful.