Jennifer is the ultimate multi-tasker. Sitting and chatting with her, I could tell that her mind was in two places. On the one hand, she sat across from me, intent and engaged in our conversation. On the other, she was completely in tune with her two boys, 13-year old W and 11-year old J, who were playing outside in the yard. Jennifer would be in the middle of a thoughtful response to my interview questions one moment, and up and in the kitchen the next, ready to cut J an apple before I’d even realized he’d asked for one.
Anticipating the needs of your child is a task that every mother is familiar with. This is especially true in Jennifer’s case, as both of her boys have Fragile X syndrome. Fragile X is a genetic disorder that causes mental impairment. Because of this, Jennifer’s children need constant care and support from their parents when they are not in school.
Although Jennifer has become an expert at anticipating and meeting the care needs of her two children, she is a human being, and also needs her own support and care. Finding somebody who can provide the proper care to her two boys is difficult. If she wants a break, Jennifer has to arrange for specialized childcare services from people who have experience working with special needs kids, like ECE graduates. This makes taking time off expensive: “Any break that Ian and I want, we have to pay for…Nobody’s calling me up and saying, ‘Do you want to send them over for an hour?’”
This is on top of the money that Jennifer and Ian have to pay for care services that they themselves cannot provide to their sons. One example is behavioural therapy, which runs the couple $110 per hour, per child. Both W and J attend behavioural therapy once per week. This isn’t including other therapies, such as speech therapy, which the boys really should be getting—but there are obstacles in this area, too.
“Speech therapy runs out at five. Occupational therapy runs out at age six. That’s just the way the government does it! That’s when OHIP cuts it off,” said Jennifer. “Just when things are starting to come along, just when things are started to get into a great routine, it drops. And that’s when the parents scramble.”
Jennifer would do anything for her boys. And most days—she does. But when you are a primary caregiver for special needs kids, it’s difficult not to be hard on yourself. “Not feeling guilty is a big thing. I often feel like I don’t do enough for W and J. I often feel like we don’t have enough fun together, and that’s where the guilt will come in.”
Jennifer wishes for more support for her and her boys. She would love to see more specialized programming for W and J that isn’t so expensive. She dreams of a society in which care is naturally provided from person to person, where we help, depend upon, and include one another. But ultimately, Jennifer wishes for the kind of support that will allow her to plan a secure future for her children.
“When I think about caring for my boys, most important is their happiness. If they’re happy, that makes me happy.”
You are welcome to access and use a printable PDF of this story.
Kids aged 0-14 with disabilities in Canada (2006)
Of parents of kids with disabilities reported that seeking extra help was too expensive
Of parents of kids with disabilities say they feel stress balancing caregiving responsibilities and other obligations
Parents of children with more severe disabilities feel they should do more for their child