The drive to Hampton was long. Samuel hates being in the car for long stretches even when the destination is an exciting one, and this time, he was making a one-way trip while I would be returning home without him. He was on high alert and told me there were butterflies in his stomach. “I’m not nervous in an upset way, just nervous because I don’t know what to expect,” he told me while staring out at the highway. I nodded in agreement and told him I felt the same way. I turned the radio up and we sang together. Then I turned it down and told him how proud of him I was. How mature he was being in his willingness to go away from home and seek support and help. We mused over the few details we had about the facility, and I talked up the amenities such as the pool, rock wall, and art room. Several times we sat in silence—each tangled in our own thoughts and emotions, yet not allowing the gravity of the destination to seep too deeply into our consciousness.
As we traveled, he repeatedly picked up my phone to look at the map and estimated time of arrival. The closer we got, the more nervous he appeared. He sat forward in his seat with his body at full alert. My anxiety rose to meet his as I wondered if he’d transition from simply being nervous to being completely upset. He turned to me several times to ask how much longer; he had set his mind on choosing to see the positive in this move. I smiled with pride and relief, grateful for his willingness to give words to his anxiety instead of internalizing them and having an emotional meltdown.
His thick hair fell forward to cover his right eye. With a swift, practiced move, he brushed it back into place. I stole glances to take in my man-child: his fuzzy moustache, the skin scattered with adolescent blemishes, a strong jawline that was steeled for the experience ahead, his chest filling out the Star Wars T-shirt, and feet encased in black Converse Chucks. He’s always been a beautiful child. His blue eyes are lined with thick lashes and enviable full eyebrows. He hasn’t smiled often in recent months, but when he does, it sets his whole being in motion, giving me a glimpse into his happier thoughts. My heart wouldn’t allow me to imagine the drive home with an empty seat beside me. I switched into work mode—a place I’d grown used to over the years when the weight of the necessary intervention was too heavy to carry with my heart in the moment. I effortlessly turned my thoughts to pride in his efforts, love for his brilliant and quirky mind, and hope for his treatment.
We weren’t new to the routine of psychiatric hospitalizations. He’d had his first stay at just three years old, an energetic, hyperactive blond enigma whose ability to manage his extreme emotions fell flat. That first stay would be the initiation into the world of mental health care, and together we’d fought tirelessly for years to get the support and answers we needed to bring him to a place of health and stability. I never dreamed I would be willingly admitting my son into a treatment facility for an unknown amount of time. The program he was going to is one of the longer programs in the country for kids like him. The average length of time in treatment there is around eight months.
He’s my oldest child, one of four, and he’s been a challenging kid to parent since early toddlerhood. It became apparent before his second birthday that he wasn’t quite like other kids his age. His personality hit extremes on all sides; happy was excessive, sadness was as dark as the night sky, and his anger was a firestorm. Standard parenting strategies didn’t work with him, and I found myself lost when it became apparent that neither consequence nor reward would deter him from doing exactly what he wanted to do.
For years I dragged him to doctor after doctor. Steeling myself against the judgmental stares in public when he’d melt down, and the cutting words of extended family who thought his behavior was a result of my failing as a mother, I pressed on for answers. I knew in my gut that his struggles were real and went far beyond the behavior of a spirited, undisciplined boy.
Before the age of eight, he had multiple diagnoses. The common thread from multiple doctors and therapists seemed to be a suspicion of bipolar disorder, rapid cycling. While I ached at the thought of his future carrying such a heavy illness, I couldn’t deny the fact that so many of the symptoms fit. Frustratingly, the diagnosis of bipolar is rarely given to children, and some doctors don’t believe it’s possible for a child to have the illness. The result was a kid whose medication management missed the very core of what he so desperately needed to bring him into stability.
Following his second inpatient stay at eight years old, we were linked with the children’s hospital in Charlottesville, Virginia. The developmental pediatrician there was incredible, and her ability to understand him, the way his brain worked, and the family dynamic was uncanny. She spent hours with him over the course of several appointments. Her assessment was thorough and calculated. When she met with me to go over her report, her diagnosis was Asperger’s.
With each new diagnosis came a mixture of relief and grief. No parent wants his or her child to be stricken with issues that create struggle and suffering; yet the diagnosis also provided something tangible to hold on to, a name for the behavior and strife that can level the stability of a family.
It’s painful for me to admit, but the diagnosis that placed him on the autism spectrum became a place for me to rest. Autism has gained more acceptance and understanding over the past decade, while mental illness continues to hide in the shadows of stigma and misinformation. Telling others that my child had autism brought a level of empathy, even from those who had little clue as to what that meant, whereas sharing the diagnosis of bipolar carried with it a weight to which many were resistant. While there were many facets of the disorder that fit him, I had a deep knowledge that there was more underneath.
He’s home now. It’s been almost a year since the day I drove him 150 miles and left him in the care of strangers. His stay spanned nine months, and he’s been home for six weeks. His treatment was life-changing, for both him and our family as a whole. The consistency of therapy combined with the team of clinicians working together created an atmosphere in which he could be properly diagnosed and effectively treated. He worked hard while he was away. I told him many times during our visits that his willingness to dig into the process of learning, healing, and growing without accusing me of abandoning him was a gift to me. It was difficult to be away from him for so long, and I found myself slipping into depression without our usual household chaos as a distraction.
I left an insecure, volatile, moody teenager at the treatment facility, and I was given back a more mature, educated, self-aware young man who works daily to stay on top of his illness and the difficulties it can bring. His current diagnoses are bipolar 1 disorder and autism spectrum disorder level 1 (what was formerly known as Asperger’s or high-functioning autism). The two together create a fairly clear picture of who he is and what he wrestles with. His therapist worked hard to educate him on the difficulties and strengths that come with the two disorders, and he has researched much on his own.
When we finally got the report listing the labels, I was immediately struck with the realization that they were the right fit. We searched so long for answers and had been given pieces throughout the years, but now we know. We’ve both worked through grief in regard to what these mental health issues will mean to his future, and there have been many nights when I’ve sobbed into the carpet while my heart broke a little more for my brave son. He’s fought his entire life for some sense of normalcy, and as his mother, I find it painful to know there is only so much I can do.
It stings me to realize that part of his journey will be to fight against the stigma of mental illness and the misguided beliefs so many people have surrounding bipolar. He and I have talked at length about weighing the benefits versus the potential heartache of sharing his story more publicly. At just 16 years old, he is able to see that there is so much mystery and myth surrounding his diagnosis for those who’ve never experienced it firsthand. In order for the general public to begin to see mental illness in the same empathetic way they see physical illness, there lies a need for brave souls to step up first and allow themselves to be seen by the world in a place that can feel scary and incredibly vulnerable.
We’ve agreed to be part of that group—he, a young man who is brilliant, creative, witty, compassionate, and handsome; and me, a mother who has navigated the turbulent waters of the mental health care system and refused to be ignored or dismissed until her son was helped. As we step into the light with our story of pain, fear, poor health care, hospitals, and survival, we’re finding more and more of those just like us who have been hiding and suffering alone. Our hope is to leverage our pain and experience to bring hope and resources to others. We both agree that the cost of being transparent is worth the reward of bringing change. The presence of mental illness in our lives has cost us greatly, and our desire is to redeem some of that payout by supporting other families with the powerful, connecting words “us too.”
Heather Hutchison strives to be a voice for the voiceless and an advocate for civil rights. A single mother of four children, one who has Bipolar and Autism and another with Autism, she’s passionate about breaking the stigma of mental illness and desires to bring change to the mental health system. She’s determined to use her knowledge and experience to educate, empower, and connect others. You can read more and book her to speak at your event at www.heather-speaks.com.