We don't talk enough about the mental health challenges of raising children with disabilities.
There are many studies showing higher rates of depression and anxiety in parents like us.
Earlier this year, former Canadian Olympian rowing champion Silken Laumann talked at a BLOOM speaker night about creating a new blended family that includes her teen stepdaughter with severe autism.
The brilliant thing about Silken was that she was totally candid about what it was like to step in to this special-needs parenting role with no experience.
"In so many ways it’s been more wonderful than my wildest expectations, and also more heart wrenching and difficult than I ever imagined," she said.
Of the challenges, she spoke of times when her daughter could be violent and her concern for the physical safety of herself, the other children, and respite workers. "We haven't had a caregiver yet who has been physically hurt and who stays," she said.
She talked about the importance of parents taking care of themselves, and about a therapy fund. Like saving for your child's education, Silken puts money away for her own mental-health counselling, as well as what her children may need in future.
Not everyone can afford private therapy, obviously. But in openly talking about how much she valued and needed counselling, Silken normalized the idea that parents like us need extra mental-health help along the way. If we're aware of that, we can look, and advocate, for more publicly-funded sources.
About a year ago I started a therapy fund. But though I put this money in a separate account, it was soon gobbled up by other "pressing" needs.
I've had lots of therapy in the past—both before and after Ben was born. And part of me feels like at this point I shouldn't need it anymore.
But then I think about how much it benefits me—being able to talk about myself with someone who's focused just on me, and who understands the unique stresses of having a child with disability who's entering adulthood but on a decidely different path than his peers.
So I created a new fund. And when my hubby e-mailed me yesterday to say it seemed ridiculous to have a couple thousand dollars sitting in a "therapy" account when we were so strapped for cash, I responded: "But I NEED it."
The other night I was at a friend's house and we had a laugh over the fact that my friend, and her daughter with a disability, and myself all see the same therapist.
And the longer I'm in this special-needs world and talking to parents I realize how common it is for parents like us to need therapy or medication, or both, to work through our emotions, keep depression at bay, and continue to feel good about ourselves and our children.
Yet we often don't talk about it. We don't tell parents earlier on in the journey how important our emotional wellbeing is and how it needs to be actively protected because we're uniquely vulnerable.
I came across a wonderful 2013 report about an Australian initiative to produce a resource that will make parents like us aware of how to take care of our mental health.
Enhancing support for the mental health of parents and carers of children with disability includes an overview of the research to date, and the results of interviews conducted with parents who were asked what they'd like to see in a brochure or booklet.
The researchers were only able to come up with one existing document online targeted to the mental health of parents of disabled children.
They also cite research showing that "a substantial proportion of parents with poor subjective wellbeing consider their health to be of low priority or are reluctant to use services for themselves."
We know we need to take care of ourselves. But too often our health falls off the radar when we're juggling too many balls related to our child's extra needs.
Yesterday I learned that a well-known American blogger writing about her daughter with severe autism was charged with trying to kill her daughter in an attempted murder-suicide. She and her daughter were found in a smoke-filled van suffering from carbon-monoxide poisoning.
The mom had advocated to get her daughter residential treatment for violent outbursts that had sent the mom to hospital twice with injuries.
The daughter had recently returned home and her mom learned she was not going to be allowed to attend a local school program, as had been planned. On her last blog, she writes about "a severe case of battle fatigue."
Which made me think about something called compassion fatigue, which is studied in relation to health professionals.
In scholarly articles, compassion fatigue is described as the natural stress that results from caring for and wanting to help someone who's traumatized or suffering. For example, it's seen in rehab and cancer nurses who care for clients in pain and witih life-altering trauma.
A professional with compassion fatigue becomes less empathetic to patients because of repeated exposure to their suffering. In Taber's Cylopedic Medical dictionary it's defined as "cynicism, emotional exhaustion, or self-centredness occuring in ahealth-care professional previously dedicated to his or her work and clients."
While parents aren't usually caring for multiple children who are in pain or traumatized, the way a doctor or nurse would, they may experience repeated exposure to their one child's trauma, and to their perceived inability to remedy it.
While numerous studies point to higher rates of stress and depression in parents like us, there doesn't seem to be much study or evidence on the best ways to mitigate it.
Let me know if you've come across something innovative in this area! Louise