By Jayne Schroeder
His small hands, the only notice of what was to come; tiny fists clenched tight and shaking from the sudden storm of rage brewing inside. The yelling, incoherent screams of anger. His hands, now unclenched, his index finger waving wildly, signifying blame to an unknown source an arm’s length away. I wonder just how bad it will get this time. How long will it last and how will it end? I complete a quick scan of the room looking for possible items in his path I fear cannot be replaced. I catch sight of his iPad and my laptop, and I send a silent plea to the Universe. I make a mental note of the blue cup of water on the coffee table, but that’s the last thing I’m thinking about. It’s just water.
My third child was born with an extra twenty-first chromosome on Earth Day, seventeen years ago. It’s not lost on me that his love for every animal and human on this planet is given equally and unconditionally. There is an innocence so breathtakingly beautiful with the living out loud approach he takes in life. He is not self-conscious; the polar opposite of most typically developing teenagers, what you see is what you get. Contrary to the most popular of pre-conceived notions regarding Down syndrome, he is not happy all the time. He is human. Just like you, his emotions run the full spectrum. He does not think twice about letting you know what he is feeling in any particular moment. It can be both beautiful and painful to watch.
Each subsequent year since his birth has left a mark within me like the rings that mark the age of a tree. The third ring from the center, his third birthday, and the year I began to suspect it was more than just Down syndrome. The fifth ring, the year the other shoe dropped and the words, “He has autism,” were spoken out loud for the first time.
The eleventh ring, the year successive transient ischemic attacks, or mini-strokes, lead to heart surgery. A device was implanted, repairing an atrial septal aneurysm and patching several holes in his heart. The twelfth ring, the year I left his dad knowing this was not the example of love I wanted my teenage daughter to go out and find for herself. The thirteenth ring, the year of numerous court trials, including an eight-hour Protection from Abuse trial, and the year his older brother, my first-born, estranged himself from me.
The fifteenth ring, the year I planted my feet firmly beneath me. No longer afraid, I began my quest for the balance my son desperately needs in his life. Advocacy became my everyday practice. The sixteenth ring, a circle having just recently completed itself. The year I placed physical miles between his father and us and ran into the open arms of my giant, extended family, seeking better for my son and me. The seventeenth ring shows only a hint of beginning growth; just three months have passed since its official start, Earth Day. Like the five prior, it looks to be still another transitional year. Yet this seventeenth ring holds within it something different than the previous sixteen rings. It holds freedom. It holds true hope for achieving balance.
He’s on his feet now, yelling, banging his fists on the worn antique trunk that doubles as our coffee table; the very trunk my sisters and I would crowd around in our youth for those rare and impromptu dinners in front of the TV. My mind wanders from the storm brewing in front of me to my own mom. She never met my children. Cancer took away my children’s grandmother before they were even born. As an alcoholic single mother of the 70s and 80s, how would she have played out this hand if it’d been dealt to her? Everything in her upper-class upbringing taught her children aren’t supposed to behave like this. Autism wasn’t something she ever experienced.
An angry, clean sweep of the coffee table, and the sound of water dripping on the newly refinished wood floor, brings me back to the room. How is it that eight ounces of water looks like the contents of a kiddie pool when tossed in anger? He moves toward me and I flinch, instinctively tightening my body and closing my eyes to anticipate the unknown. How is it that I’ve left an abusive marriage and still feel like a hostage in my own home?
He passes by me and lobs a punch at the TV. Thankfully the wall behind it stops it from tumbling to the floor. This is new territory, punching the TV. I have friends who seem to go through iPad screens, TVs, and the replacement of bathroom mirrors and windowpanes, on a regular basis. Is this just the normal expected progression of parenting a child with the dual diagnosis of Down syndrome and autism? Is this seventeen?
He’s off and running toward the back of the house. I try to remember what’s back there that could bring harm to him. After the TV, anything is game it seems. Oh god no, the chef’s knife on the cutting board in the kitchen. He wouldn’t. Would he? I try to recall what I know about crisis in the midst of it, separate myself from him and don’t intervene unless he’s hurting himself or others.
I can hear him crying from the distance of the kitchen, but it sounds different somehow. A mother knows the various cries of her child, yet this one I don’t seem to recognize. He’s screaming now. I panic. The knife. I run for the kitchen and find him splayed out on the floor holding his hand. My eyes dart to the knife on the counter, bracing myself for the potential sight of blood. Thankfully there is none. I grab the knife and place it in the sink aware of the much-needed deep breath I am finally taking. Within that breath I realize he’s holding his hand because it hurts from punching the TV.
I inhale and exhale. The worst is behind us now.
He’s crying, in a heap on the floor, overtaken by what has just occurred. I get down on the cold tile of the kitchen floor and scoop seventeen years of him into my arms, into my lap, and hold him tight. Tighter, it seems, than a mother would normally hold a child, but I know we both need it in this moment. He needs that input, that regulation, he needs to know he is safe and I am here.
Just two months prior we’d packed the contents of our home into a 26-foot U-Haul truck and drove it 1300 miles west to the place of my Midwest childhood roots. Leaving felt just like leaving my twenty-year marriage all over again. For the second time in five years, I was taking a giant, blind leap and hoping for a soft place to land. If only my children had been given the luxury of a mentally healthy dad. If only. Two words I am learning to leave behind like the consistently inconsistent father of my children. It’s just the two of us now, my son and me. His older sister just completed her first year of college. Freedom and spontaneity surround her, something life under the roof with her younger brother just can’t afford.
Our new life here guarantees each and every day starts with a natural flow carved out between a mother and son. An overgrown boy with sleep in his eyes propels himself into my bed each morning with a declaration of, “Apple juice! Coffee!” His verbal cue for me to get out of bed and start this freshly gifted day we’ve been given together. Each morning I try to linger with him in bed, asking him if he had good dreams the night before. His answer is the same every time, “Star Wars!” There is comfort in ritual. I know that I am one of very few moms who get this moment each morning with a seventeen-year-old son. I much prefer this interactive morning ritual to his comfort-seeking quest to cover every surface of our home in mini figurines and paper, but I understand what he needs. Right now, seventeen is about finding what we both need.
For now, I am mentally placing this frightening night of unexpected rage to the internal back burner of my motherhood stove, where it will sit comfortably beside fear and the unknowns. I focus now on the growth he is slowly making as we meld into this seventeenth ring of our tree of life. Our new surroundings bring with it a team of professionals within his school setting that are sending him the same message as me; we’re here, you’re safe, and we’re not going anywhere. There is finally a team working together for the greater good that is this child’s life. This child’s future. Consistency is key for this almond-eyed boy in a teenager’s body, something I couldn’t guarantee for him before now.
Fresh in my youngest son’s seventeenth year, I find myself giving pause to that same milestone year of his older brother and sister. This year won’t bring college visits, prom, or late nights of worry, while he and his friends pile into one car, staying out past his curfew. Empty nest isn’t a stage we’re approaching. It doesn’t loom on the horizon, staring down at me with each passing day. There are no plans to turn his bedroom into the studio space it would be so perfect for. It’s just the two of us, together, for the foreseeable future.
For sanity’s sake, I must create for myself an adapted version of an empty nest, within our coupled-up life. We both need that part of our day that doesn’t involve the other. With my sister living just three blocks away, we have a level of support I’ve never experienced in my twenty-four years of parenting. Shared dinners and sleepovers are becoming our new normal. And within that new normal, I am finally learning that how most view our life as their impossible, it’s our normal. Transition shows no sign of letting up.
Year seventeen may be filled with oodles of unknowns, another serving of instability, and my trusty sidekick, fear, just like the sixteen before, but it will also be the year I must begin to carve out tiny slices of space between us. Like any other typical seventeen-year-old and his mom, I cramp his style. Just as he needs time with others, I need time without him. Ring seventeen, I hope, will also mark the palpable change of when motherhood and I finally find balance, twenty-five years after we met.
Jayne Schroeder is a single mother and writer who lives with her son and daughter in Milwaukee, WI. Jayne’s work has previously appeared in Perspectives on Diseases and Disorders, Lupus, by Gale, Cengage Learning.
I must say this touched my heart more than you could know. More so as this is so much like my daughter Rachel’s life with Prader Willi Syndrome and Autism. Love to you. for writing this.
Thank you, Barbara, for reading, for taking the time to comment, and for letting me know you felt a connection. Parenting a complex child is no easy feat, but when you make a connection with another parent with similar experiences, the payoff of knowing you are never alone is truly one of life’s most
beautiful gifts. So happy to connect with Jen, who then connected me with Rachel, and for you to leave this lovely comment. Thank you ?