It was a scorching day so I’d taken my children to a splash pad. I was watching my daughters dancing in the water, when out of the corner of my eye I caught sight of my nine-year-old son, Allan, dart into the parking lot. He ran right in front of a moving car, which had to swerve not to hit him. I bolted over and grabbed him by the arm.
“Why would you do that? You could have been killed!”
This came as a surprise to Allan. He’d spotted a bee at the splash pad and run from it, not thinking for a moment that hurtling through the parking lot held far greater dangers.
Allan drifted through his days, coming downstairs in the morning wearing yesterday’s dirty clothes, never closing cupboard doors or drawers, forgetting to zip his schoolbag as he headed out the door with his hair unbrushed. Every interaction was tinged with frustration, and I felt I was failing as a parent. None of the tricks that I’d learned parenting my two eldest sons worked. Almost immediately after Allan came into our family, it was clear to me something was very wrong.
Nine years ago, when my husband, Trevor, and I set out to adopt, we had two stipulations: The child must be able to live independently one day and must not have been exposed to alcohol prenatally. From what we’d heard in our adoption classes, alcohol exposure created a muddle of impossible behaviours, far beyond what we could handle.
In the end we didn’t end up adopting a child—we adopted four children. The siblings we fell in love with from the moment we were handed their profile were aged 3, 5, 7 and 9. In the kids’ profile photo they had optimistic smiles, and when we got to meet them in person, we discovered they had endearing personalities to match.
On visits, they loved spending time on our farm—running around gleefully in the barn and fields, gently hugging our cats and chickens and patiently feeding grass to our goats and ponies. I knew it would be an adjustment to go from a family of four to a family of eight, but aside from having to cook twice as much, I expected things would carry on the same in our home—just with double the life and love. I couldn’t wait.
People say: “If you adopt older children, rather than babies, you know what you’re getting.” Well it turns out we didn’t. The anticipated mess and noise of our four new kids was compounded by giant tantrums and all kinds of surprising behaviours. Each child added unique elements to the hurricane: one punched holes through walls, another ran away during thunderstorms, another screamed at an ear-piercing pitch for hours at a time.
Allan was the biggest puzzle. He raged over small things: One time I told him dinner was still a few minutes away, so he leaped toward a pot of water boiling on the stove and almost burned himself. A trip to Niagara Falls left him sitting on the curb feeling sick and sticking his fingers in his ears, to block out the chatter of the crowds. And even though his classmates had long since twigged about Santa, Allan still wrote him earnest letters.
Allan spoke as articulately as other boys his age, so we initially pitched our expectations for him far beyond what he could manage. It was hard not to compare him to my eldest sons, and as we grappled with more and more behaviours that we couldn’t understand, I began to worry that he didn’t want to mature or try at anything in life.
Night after night of homework battles made us push for psych-educational testing at the school. It took a year to materialize, but finally Allan was diagnosed with intellectual delays. While the Children’s Aid Society told us this likely stemmed from a turbulent ride through the foster-care system, we were convinced there was more to it. Every aspect of life was such a struggle. After I presented our social worker with a list of Allan’s deficits, she finally referred us to a doctor trained in diagnosing fetal alcohol spectrum disorder (FASD).
Many kids don’t have any of the facial features associated with FASD—flat face, short nose, smooth upper lip, folds at the eyes—making it an invisible disability. This doctor measured Allan’s face and determined he had two of these features. Next she examined his growth records, pored over his behaviour questionnaire and read his educational reports. Then she sent Allan into her office to play on the computer. We looked at her in anxious anticipation. “He has FASD,” she said. “You probably already know that.”
I did. And yet somehow I still felt taken aback. Trevor and I left the clinic in silence, each needing to process our shock alone, before we spoke about what this diagnosis would mean.
There was a storm of emotion within me: remorse that I’d expected so much of Allan, grief that he wouldn’t be the child I wanted him to be, and a simmering anger that so many doctors, social workers, and teachers hadn’t clued in before now. I also felt livid at Allan’s birth mother for drinking while she was pregnant. FASD is 100 percent preventable, and her actions were going to leave my son with lifelong struggles.
Telling Allan was difficult. Later that evening, when the other kids were tucked in, I sat on my son’s bed with him and said quietly, “There’s something wrong with your brain that makes things so hard. You have something called FASD. Things will be hard but you’ll still have a happy life.” In those early days, I didn’t really believe this myself, but I had to give him hope.
Allan said “How did I get it?” and I told him it was an accident, that it had been caused by his birth mother drinking. He fell into my arms crying. Over the next few days he swung between all-out rages and moments of profound sadness that she’d hurt him. At night in bed, he asked me, “Why?” over and over, in between sobbing and punching his pillow. My answers were guesses: that she’d had her own demons… that she wouldn’t have intentionally harmed him. In my efforts to help Allan process his anger, I somehow quelled my own.
Because our daughter Matilda was six years younger than Allan, it took a few years after Allan’s diagnosis for us to spot a pattern of similarities between the two. Even though Matilda didn’t lie or steal like Allan did, she had poor executive functioning: She never thought to wear a coat when it was cold out. She threw enormous tantrums, hurting herself or hurting me. She had meltdowns if she found herself somewhere noisy. So when she was ten, we took Matilda to an FASD clinic for five intensive days of testing. With significant cognitive impairments and facial features noted, she received an FASD diagnosis too. I felt numb when they told me—my first thought was, That’s one more child to raise with lifelong challenges.
We suspected that our two other daughters had been exposed to alcohol in utero too. Molly, our middle daughter, had already been diagnosed with intellectual delays through psych-ed testing. Our eldest daughter, Clare, struggled with memory and retention. Both played with toys far beyond the point when other girls gave them up. During our intake appointment for Matilda at the FASD clinic we described our two oldest daughters to the social worker, and she informed us they both had fetal alcohol effects (FAE)—a milder version of full-blown FASD. Later, back at the farm, as Trevor and I watched the kids playing together outside—all much smaller and less mature than they should have been for their ages—I shook my head and said, “I can’t believe every single one of them has been affected, and that it took so long to know.”
FASD is a spectrum disorder, presenting differently depending on the time, duration, and severity of exposure to alcohol that a developing fetus has in the womb. And kids with FASD are complex. Clare, our child with the least exposure, watched Disney movies and kept toys on her shelves well into high school. But at 15, she is now texting friends, dating, and working towards college, moving through the world like other teenagers. Molly just turned 13, and she loves to try new hairstyles and follow make-up tutorials on Youtube, just like her neuro-typical peers. While she has assistive technology at school, and college is likely out of the equation, she is hardworking and incredibly responsible: I can trust her to handle all the barn chores alone.
Allan and Matilda, however, may need to be shown something simple like turning off a bedroom light as many as 1,000 times before it sinks in—and even once it has, they might still have bad days when the skill is temporarily lost again. They don’t understand sequencing, so I cannot give instructions on tasks with multiple steps, like making a sandwich. We practice, practice, practice everything from feeding the dog to folding laundry, until that miraculous day when we see a basic life skill has been assimilated.
My husband likens parenting our kids with FASD to playing a broken record: We repeat an instruction over and over, skipping in that same groove day after day, until eventually a simple task is learned, and we can jump to the next groove. Between them our four kids need more support than we’d ever imagined we had it in us to give.
To calm the chaos, we’ve learned a few good tricks. Fidget toys help on car rides and weighted blankets calm our kids down after a long day. If we go somewhere busy, we take quiet breaks so it doesn’t become too overwhelming. We’ve set up our home so that everything has its place; there’s minimal clutter; and there are visual cues on every wall, like picture charts reminding them of what to do in the morning. Giving our kids structure and outlets for nervous energy goes a long way towards keeping their emotions on an even keel.
With patience and determination, our kids have made huge progress. Watching Clare and Molly customize their jeans and talk about homework as young teens, we realize they’re going to be fine. They both handle responsibility and will likely go on to have jobs and families.
Matilda is learning to manage her emotions and focus in school. She was proactive in asking her teacher if she could have her desk moved to the front of the class, to help her pay attention. We’ve been told she’ll probably need our help as an adult for things like budgeting, shopping and monitoring hygiene, but we’re still grateful for how far she has come since her diagnosis.
Allan, whose challenges remain the greatest; is now in a special education class so he can learn essential life skills like counting money and washing dishes, instead of algebra. I keep a photo on the fridge of him with his classmates, some of whom have Down syndrome or other visible disabilities. This reminds me in moments when my patience is wearing thin that my son’s disability may be invisible, but it’s very real.
While we thought he’d never cope with a job, at age 17 he volunteers at the food bank and was recently given a reference letter saying he’s a hard worker. We call him “the Chicken Whisperer” because he loves playing with the chickens in our yard, and they flock to him. Perhaps he will keep chickens as pets as an adult, as he hopes to. We’re confident he can manage some sort of work to pay for the feed.
Children with FASD have endearing qualities too that we’d not known about back when we insisted we’d never consider a child with the disorder. These kids often have an innocence that neuro-typical kids usually lose with age. While most teenage boys are in that phase of grunting at their parents, Allan still throws his arms around me and says, “I love you, Mommy.” Matilda, although she’s now an 11-year-old, still cuddles in my lap. All four of my kids are still mystified by magic and unicorns and enthralled by Christmas. It’s fulfilling to parent children so full of affection and wonder.
None of us chose to live with this devastating disorder—least of all our children—but since we got the diagnoses, we have chosen resilience. Life may be harder for the kids, but they will be just fine. For all the heartache FASD has caused, we feel tremendous relief that our children ended up with us—loved and safe within our family.
This article was originally published online in November 2017