By Dr. Yona Lunsky, H-CARDD Director and Clinician Scientist, CAMH
The first week of November is Canadian Down Syndrome week. It also marks the beginning of National Caregiver month. And while both deserve attention, I am unsure of how often we consider their overlap. This week, families across our country are taking the time to celebrate Down syndrome through social media and in their local communities. So this blog is a reminder for families to also celebrate their role as caregiver, and attend to their needs as a caregiver, today and every day.
I decided to write this blog after leading a workshop this weekend at the national Down Syndrome Research Foundation conference, “From Good to Great” on family mental health. This workshop was a small portion of a larger workshop that I gave last spring on Down Syndrome and Mental Health. But rather than discuss how to promote mental health and address mental illness experienced by those with Down syndrome, I shifted the focus entirely to the mental health of moms and dads, brothers and sisters.
The families devoted 90 minutes of their very busy lives to talking about their own mental health, and for most of the participants, it was the first time they had done that. Why is it so hard for families? One mother, Sue Robins, put it this way: “Having a child with a disability makes you instantly and constantly vulnerable. In a world where we are supposed to be ‘strong’, feeling vulnerable is very uncomfortable. And with so much on our plates already, feeling uncomfortable is something we will avoid if we can.”
Individually, and then together, we reflected on the various parts of our lives that deplete us, and parts that nourish us. I shared responses that I heard from a similar activity, when I asked a group of teens and adults with Down syndrome the same question.
Consistent with the airplane oxygen mask analogy (before you put a mask on your child, you must put yours on first), we realized if we want to encourage the people we love with Down syndrome to prioritize nourishment in their lives and notice when they feel stressed or depleted, we need to model that for ourselves. We can live in such a way where we recognize the value of our own mental health. Even at times when we can’t fix how we are feeling, we can approach these moments with gentleness and care.
Our workshop ended with some reminders worth repeating:
As Sue Robins explained, “Save some love for yourself.” We owe this to our families and we owe it to ourselves. As Canadian Down Syndrome week draws to a close, I hope we can celebrate disability and celebrate caregiving. Both need our love and attention.
To read more from Sue Robins about parent mental health and Down syndrome, click here.
To read more about family mental health and dual diagnosis (developmental disability and mental illness), read here. There is a full chapter in our family guide on dual diagnosis ABOUT self-care.