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Adoption

We Adopted Two Babies in Four Months

After five years of trying to build a family, Nicole and Levent decided to adopt. Now with two kids with developmental disabilities, and progressive multiple sclerosis for Levent, here's how this family makes it work.

We Adopted Two Babies in Four Months

Credit: Nicole Johnson

In 2014, Nicole Johnson* and her husband Levent became the parents of two babies within the span of four months. They had spent five years trying to build a family, first the traditional way, then through fertility treatments. A few weeks after they finished the 15-month-long public adoption training and vetting process, they got the call: A nine-month-old baby needed a home. The surprise? The baby's birth mother was five months pregnant with another baby who would also be going into foster care.

Meeting their daughter

After just one interview with social workers, the Johnsons met their daughter for the first time. She was living with her birth father’s cousin, about an hour away. “We were very nervous. She was nine months old—not a newborn—so there was no guarantee she’d even want to come to us.” But the connection between the Johnsons and their daughter was practically immediate. “After about 10 minutes, she held her arms out to come to us.”

Meeting their son

Two weeks later, their baby girl was home with them. The Johnsons knew their daughter’s brother would be at risk for fetal alcohol spectrum disorder (FASD), and they put a lot of time into evaluating whether they were the right home for him. The couple met their son for the first time the day after he was born. “The hours we poured into this decision—then the second they hand him to you, you’re like ‘of course!’” He went home with them the next morning. Johnson has a photo of her children from that day that still melts her heart. “I can’t ever imagine a world where they didn’t grow up together.”

Living with children with developmental disabilities

Today, they’re nine and 10. “My daughter’s a beautiful little conundrum—that’s what I call her,” says Nicole. “And my son’s like a bouncy ball. So I’m never bored.” Both her children have developmental disabilities—her son has FASD and her daughter has autism—and getting diagnoses and support hasn't been easy.

According to Nicole, that’s despite the support that was promised to them by Family and Children's Services of Waterloo Region during the adoption process. If their prospective child ever needed respite, a psychiatric evaluation, or anything else, they were told they’d be able to contact the department which would help secure funding.

Nicole knew her son had prenatal alcohol exposure. He was a busy toddler, and as he got older, some of his behaviours became less typical for kids his age. So she reached out to Family Services for assistance. “It was intensely complicated—thousands of hoops to jump through.” And, from talking to other families who’ve been through it, almost nothing ends up being covered, so they rarely even bother anymore. “We’ve given up on asking for help.”

Getting diagnoses and support

We Adopted Two Babies in Four Months
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Nicole has also noticed a discrepancy in her ability to access services for her two children, based on their different diagnoses. “In some ways, our son’s FASD is trickier, even though it's 2.5 times more prevalent than autism, there isn't as much knowledge about it. Often people don’t know what to do with it.” After an 18-month wait in the public system, Johnson’s son received a diagnosis in 2019, when he was five. The FASD coordinators with Sunbeam Community & Developmental Services in Kitchener, Ontario, have been able to help Johnson explain the diagnosis to her son’s school. And for a while, she was part of a support group for FASD caregivers run by experienced parents through Camino Well Being, also in Kitchener. Unfortunately the community-based mental health and social service organization lost funding so the group didn't continue this year.

Autism, on the surface at least, is better understood by the general public. According to a 2018 survey by the National Autism Spectrum Disorder Surveillance System, one in 66 children in Canada is diagnosed with Autism Spectrum Disorder. But that doesn’t mean it was easy for the Johnson family to get the right diagnosis for their daughter.

Her pediatrician first suspected she had autism when she was three years old. However, according to Nicole, the specialists who evaluated her daughter weren't convinced because the toddler could make and maintain eye contact, something some people with autism avoid. “So many people are stuck in the typical male presentation of autism, and think no one who has it can make meaningful eye contact,” says Nicole. Her daughter finally received an official autism diagnosis when she was nine, six years after her pediatrician’s first referral. And even with the diagnosis, applying for financial support is a lengthy process. “The wait times are so long. It takes forever to get anything going.”

Levent's Multiple Sclerosis

When Levent was 18, he was suddenly unable to walk for a month. At the time, his doctor told him if anything like that ever happened, it was likely because Levent had MS, a disease in which the body’s immune system attacks the brain and spinal cord. In 2008, a year and a half before the Johnsons got married, Levent woke up one morning unable to move his right leg. His family doctor referred him to a neurologist, who diagnosed him initially with relapsing-remitting MS, meaning his symptoms—mostly in his right leg—would flare up and then subside. “But the amount of residual damage that’s left is unpredictable.” At first, he merely lost the ability to run. Eventually, his mobility started to seriously go downhill. A few years later, his diagnosis was changed to progressive MS. “It’s a slow, steady decline,” says Johnson.

How they make it work

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Though Levent, now 40, can get around with the aid of a walker, he mostly uses a wheelchair to avoid the risk of falling and injuring himself. He lives in the basement of the family house, where he has access to a bedroom, his office and a washroom. The family spends plenty of time all together, and Nicole says the arrangement has some upsides, like more space for her high-energy kids, who need to decompress after a day at school. “My husband and my son have their ‘boys cave’ and my daughter enjoys her room in quiet.” There are challenges, too, of course. Nicole does most of the housework and repairs around the home. “My husband does what he can, but, naturally, most of it falls on me these days.”

Nicole’s children each qualify for one day per month of respite care through Camino Well Being. “The staff are phenomenal—my son could be having the trickiest day, and it doesn’t faze them. They always show the kids how much they care.” But that’s one seven-hour day per month, and Nicole’s children often go individually, meaning she’s always on duty. The idea of an overnight break is even harder to fathom.

And though that may be easier to orchestrate when they’re older, the progression of FASD is unpredictable. “It’s a brain injury, right? Things that seem minor now might not be later.” And there are other risks related to the disorder. According to data from Canada’s National FASD Database, over a quarter of people with FASD experience suicidal ideation or attempt suicide during their lifetime.

Rates of addiction, substance use disorders and mental health issues are higher too, and people with FASD are overrepresented in the Canadian correctional system. “The life expectancy for people with FASD is 34,” says Johnson, citing an American study by the National Institute of Health which found that the leading causes of death were suicide and accidents. “But our goal has always been to crush the numbers. We just want to crush all the numbers.”

*Nicole and Levent’s surname has been changed to protect the family’s privacy.

This article was originally published on May 28, 2024

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Caitlin Walsh Miller is a writer and editor based in Montreal. Her work has appeared in magazines online and at newsstands across Canada, including Maclean’sToronto Life and Best Health. Formerly, she was senior editor of Air Canada enRoute. See more of her work at www.cwm.ink

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