YOUR STORY - Brooke Porter Juneau

Brooke's email to The Story

"My son Riley was born on May Day 1999, the eagerly-anticipated first child of college sweethearts. I'd been working as a preschool teacher and administrator, and was bringing to motherhood a sizable dowry of knowledge, passion, and respect for young children. Little did I know on that balmy afternoon that everything I thought I knew was about to be turned onto its head.

Brooke's son Riley Juneau

Though he was a very sweet and lovable baby, Riley never looked people in the eye - never - nor did he ever direct his gaze at playthings. At seven months, he had still not attempted to roll over, and was content to lie on his back, twirling his little hands and feet, eyes always cocked far over to the side. After many consultations with "the experts," Riley was diagnosed with ocular motor apraxia, a rare condition which impairs one's ability to initiate eye movements. The following year was a whirlwind of MRIs, genetic tests, therapy sessions, and internet research, some of which terrified us. With loving support from the staff of the Governor Morehead Preschool for the Visually Impaired, Riley slowly mastered standing, walking, and bestowing upon us the extra-special treat of maneuvering his eyes to meet ours when we talked and sang to him. We were advised to expect continued delays in speech and motor skills, but we rejoiced over every bit of progress, and fell more in love with our adorable and enigmatic little boy every day.

On Riley's third birthday, we moved from Raleigh to Greensboro - coincidentally, into the former home of Riley's new case manager and visual therapist, who quickly became a member of our family. A few weeks after our arrival, Riley and I were playing on a neighborhood playground when we spotted a beautiful little girl on a swing with hair the color of a new penny. Her mother smiled and laughed as she pushed her, and I recognized in her an enjoyment of her child that I instantly connected with.  We struck up a conversation as our kids swung side by side. Little Sarah was rosy-cheeked, cheerful, and precocious. From that day forward, she and her parents, Robb and Jennifer, became our fast friends.

A year later, we began to feel concerned about Riley's continued struggle with development. He was making progress, but the gap between him and his preschool friends was unmistakably widening. At the urging of his case manager, we placed ourselves on the waiting list for an intensive developmental evaluation at a center in Chapel Hill. One Saturday morning as our appointment neared, my husband and I sat listening to an interview on WUNC with Dr. Eric Schopler, founder of UNC's TEACCH program. As Dr. Schopler described the symptoms of autism, my husband and I locked our gazes on each other. Oh no, we were both thinking. Riley has autism too.

Meanwhile, Robb and Jennifer were in the midst of moving to a town in South Carolina where Jennifer was to begin a new job. Two days before Riley's evaluation, I was surprised to get a call from Robb in the middle of the afternoon.  I once again felt my blood run cold as he told me he was calling from Duke Hospital; Sarah was going into surgery to remove a brain tumor. Knowing we'd be in nearby Chapel Hill later that week, we made plans to visit our friends at Duke after Riley's evaluation.

The day of the evaluation was grueling. Three years later, I can still feel the tension and fatigue in my muscles as I remember pacing around the waiting room with our new two-month-old baby while Riley underwent test after test, exam after exam, for eight long hours. At the end of the day, we received the news we'd been expecting: Riley did indeed have autism, and his apraxia was global, affecting all of his motor systems in the same way it had affected his eyes. We left the clinic and drove in silence toward Duke, feeling emptier and more stunned than we had ever expected. What did all of this mean for Riley's future? Why didn't we know before - could we have done more to help him along? Would our new baby son face the same challenges in the years ahead? As we arrived at the hospital and made our way to the children's ICU, we all held hands and shuffled solemnly through the halls as nurses pulled pale children from room to room in red wagons.

Sarah Violet Ellis in the hospital following surgery

Then we laid eyes on Sarah. I remember noticing first the bright red curls spilling out from under a pile of white bandages that dwarfed her little face. Robb said she'd looked like "my sickly little snowball" when she'd first come out of surgery two days earlier; the pile of bandages was more like a mountain then. I noticed second that her cheeks were still rosy pink, and I told her she looked beautiful. Then two-year-old Sarah began shaking, trembling, and Robb and Jennifer rushed to her side, cooing her our of her discomfort until a nurse arrived.

There is no other way to describe this experience than to say that I could almost see my looming panic over Riley's future whittled down to nothing; at least I was reasonably certain he had a future. Riley could be frustrated, even enraged, by his own limitations - but he was not in pain. While Jennifer would curl up gingerly beside Sarah in her hospital bed later that night, I would sleep soundly in my home, knowing that Riley would most likely get through the night okay. I hurt to the core for my friends and their beautiful daughter, whom they loved so dearly. The diagnosis we had just received seemed instantly manageable.

Approximately six months later, Sarah died at home in her parents' arms. Meanwhile, Riley was attending preschool, indulging his newly-acquired love of macaroni and cheese, and exploring- almost obsessively- the music of the Talking Heads. Autism no longer seemed particularly daunting.

That summer, I spent many hours gazing at the small pond behind our house, watching a mother swan nesting behind a curtain of wisteria. Every year this swan attended her nest with astounding vigilance for two months or more, moving only occasionally to stretch her black legs and resettle herself. Then she would leads her cygnets out onto the water - and within a week, they would all disappear, the victims of hungry turtles and hawks. Normally silent, she would cry for her babies for an afternoon or two, then resign herself to circling the pond for another three seasons until it was time to try again. I thought much about motherhood that summer: how we open up our hearts to the deepest love and the deepest hurt when we bring children into our families; how we try and try again to give our love to a new generation, despite the ridiculous risks; how having our child with you each day is an indescribable gift, regardless of their challenges, regardless of the bad days. The gift is being able to hold them at any given moment; to satiate the deep, urgent need to protect them.

Today, Robb and Jennifer live with two other beautiful daughters, just around the corner from Sarah's resting place, marked by a custom statue and a gorgeous perennial garden. The swan, having lost her mate, has retired to a wildlife refuge where her few surviving cygnets have grown up under her tutelage. And I have found myself in a job I dearly love, assisting other families whose children have been diagnosed with a disability. I am also involved in several volunteer projects aimed at helping parents who have children with special needs connect with the agencies and resources they need to become effective advocates for their children.  There is great purpose in this experience. I have no doubt that everything I have learned from my sons - from Riley, who teaches me to teach him in new ways, and from little Hayden, who thrives on the old familiar ways - has brought me to the place I was meant to occupy. And as for Sarah; she has taught me to appreciate every moment with them both. While I would give anything to restore her to her loving family, I also appreciate how much we all learned from her about life, about the preciousness of childhood, and about letting go of the small stuff.
   
Even when it seems big."

• What's new in autism research?

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