When our son was a baby, his fussiness and disruptive crying jags became a dividing point in what had previously been a strong union. While I shouldered the weight of night feedings and sleeplessness that turned into night terrors in toddlerhood, my husband retreated to the basement for rest, and escaped to work for normalcy. A bookmark had fallen out of our once-synced relationship and we were no longer on the same page—physically or mentally.
Bennett was eventually diagnosed with autism and a chromosomal abnormality and we bridged the emotional gap by researching both conditions together and working to get our son into an early intervention program.
Six years later we’ve weathered the diagnosis and grown closer as a family, but the journey—and the daily stress—is far from over. Now 10, our son still has disruptive behaviours that are an everyday struggle. Often feeling frustrated and socially isolated, my husband and I have to make an effort to connect with each other at the end of emotionally exhausting days.
All relationships have their tense moments, from clashes over finances to butting heads over housework. But throw a child with special needs into the family dynamic and it creates a special kind of stress that can increase the risk of marital failure.
Raising a child with special needs is stressful
A 2010 study published in the Journal of Family Psychology found that parents of an autistic child have a nearly 24 percent chance of divorce, compared with just a 14 percent chance for parents with a neuro-typical kid. Other studies report a smaller difference—the Kennedy Krieger Institute in Baltimore found that a child’s autism has virtually no impact on family structure, which is good news.
What’s different for parents raising a child with special needs is the stress load. There’s an emotional toll from the grief of a diagnosis, and there might also be a financial burden from additional health care or education costs. Another reality is that leisure time often becomes work—driving to therapy sessions, reading books on the subject—and it can seem like it will never end.
Why this mom of a kid with autism is grieving a life her family will never have “Lots of families that I deal with haven’t had a vacation for years. Or their child’s behaviour is such that it becomes awkward to go out and experience the little pleasures that other families are enjoying,” says Glen Davies, director of Vancouver’s ABLE Clinic, which provides assessment and treatment for kids with developmental, learning, attention and behaviour difficulties. “So you have a situation where the stress is high, and the positive things that keep us going are low. When it gets skewed in that fashion is when it becomes really hard on a couple.”
Indeed, one factor that keeps a relationship strong is shared fun. When that’s not happening, it’s hard to connect and communicate.
“You devote a lot of time and energy toward your child who has special needs, so that can leave a lot less time and energy for other family members, including your spouse. That can create a distance between couples,” says Sheri Madigan, Canada Research Chair in Determinants of Child Development and an assistant professor in the Department of Psychology at the University of Calgary.
A big solution, say experts, is to carve out space to spend time together. Realistically, however, that can only happen when families have a strong support network, and research bears this out.
Build a support network
“You can have a difficult child, but the counterbalance to that is that if you’re well supported, you’ll make it,” says Davies. Good support comes in the form of family and friends who can provide practical assistance (e.g. respite), hired help such as therapists, and access to health care and the right kind of treatment. “All of those go a huge way to lowering stress,” says Davies.
Erika Moyer can relate. The mom of two, including a four-year-old daughter, Evita, who has autism and sensory processing disorder, says the hardest part about parenting a child with special needs has been the stress that comes from always being “on” without any breaks.
“I’m even hyper-vigilant in my sleep!” says Erika.
She and her husband recently hired a therapist to work with Evita during the week and provide some respite so the couple can go out together regularly.
“We no longer worry when we’re not there because we know she can handle whatever comes up,” says Erika.
That support extends to within the relationship as well—Erika and her partner check in with each other regularly to make sure the division of labour around Evita’s care is balanced. It’s a strategy Madigan applauds.
“You don’t want one parent to feel like they’re doing more than the other and then feel resentful,” she says, adding that sometimes a third party, such as a counsellor or therapist, can help couples process their thoughts and feelings after a diagnosis, and work with them to find ways to support one another.
Talk to a counsellor
When their son Emmett, three, was diagnosed with Chromosome 18p deletion syndrome, along with speech apraxia and global developmental delays, Jacintha Gurash and Fred Baker headed straight to counselling.
“It helped us have a safe space to bring up the stuff we were afraid of, like what his future was going to hold, and more than anything how the world was going to accept him, and how we would facilitate that,” says Jacintha.
Remember to communicate
Finally, experts say communication between partners is key, and both Erika Moyer and Jacintha Gurash have worked hard to maintain that dialogue.
“We were super-aware of the increased divorce rates among parents of kids with special needs, so we try hard not to shy away from those conversations. We talk about the stressors that might be the causes of those stats and we try and stay on top of it for ourselves,” says Jacintha. “We give each other permission to feel those feelings—if one of us is having a sad day, that’s okay. We also give each other grace.”
As the years have gone by, my husband and I have settled on a few strategies that work for us. We spell each other off for self-care, and have cultivated a support network that allows us to go on regular dates and spend one-on-one time with our daughter. We bond nightly over Netflix and are fortunate to be able to take an annual trip together to reconnect. We also talk about it regularly, even if the conversations are hard or repetitive.
These are little things on a long road, but when it comes to raising a child with special needs, it’s truly a marathon (not a sprint). The journey counts, and we hope to finish as a team.