Earlier this week, I attended a session on Optimizing Mental Wellness in People with Down Syndrome at the Down Syndrome Resource Foundation. The speaker was Susan Fawcett, their Director of Therapy, Behaviour and Family Support.
Susan’s presentation reminded me how my own mental health and my kid’s mental health are all wrapped up together.
It makes me a wee bit nervous to talk about mental health. First there’s the regular ole mental health stigma. Then there’s the incredible pressure I feel to be the strong mom who advocates for system change all the time. I even feel pushed into cheerleader mode, aka: Everything’s Fine! Fine! Fine! My kid is the best kid with Down syndrome EVER!
Of course, that’s all bullshit.
Here I will repeat my mantra: Being a human being is stressful. Having children is extra-stressful. Having a kid with Down syndrome adds yet another layer of stress. But 95% of my stress comes from systems (health, human services and education sectors) and the hostile, ignorant ableist world. This is not my son’s fault. I won’t talk about his mental health here because that’s his business, not mine. I don’t want to trod on his dignity. But I can talk about my own struggles.
If we are truthful, we all have mental health stuff, whether we have a disabled kid or not. It just takes becoming vulnerable for our stuff to be exposed. I soldiered through the strong mama bear persona for 13 years after my son was born. It took getting cancer two years ago for my whole house of cards to come tumbling down.
How I wish I had been more preventative about my own mental health. I should have regularly seen a mental health professional to at least deal with my own childhood stuff. But I didn’t – the crisis of cancer is what introduced me to the therapist’s office. Now I think and talk about mental health a lot.
Susan’s presentation was timely for me. She offered helpful strategies for mental wellness, both for our kids and ourselves. Susan gave me kind permission to share her talk, so I’ve summarized her points. As she told me, she wants to give this mental health piece more airtime.
Mental Wellness Strategies for Children with Down Syndrome – Susan Fawcett
- Help your kids engage in activities to experience both pleasure and mastery. Susan called this behavioural activation.
- Make sure your child has a peer group of children of similar intellectual ability, especially starting in late elementary school.
- Consider social skill training, like the Zones of Regulation.
- Always look for self-esteem boosters for your child, like chances to be more independent + have choice, opportunities to teach others and regularly talk about your child’s strengths and unique talents with them.
- Give your children regular praise. Interesting, Susan has observed us parents don’t offer enough specific, enthusiastic praise to our children. I’ve been guilty of that – falling into ‘corrective’ mode with my own son, which is a way of being that is focused on the negative. I’ll be more aware of this going forward.
- Cognitive behavioural therapy can help all of us – of course including people with intellectual disabilities too!
- Talk to your child early and often about having Down syndrome. (Books like Paint the Octopus Red can help explain genetics and for older kids, shows like Born this Way are awesome for role-modelling and offering a glimpse into the future).
Mental Wellness Strategies for Families – Susan Fawcett
- Acknowledge having a child with an intellectual disability is stressful.
- Organize date nights with your partner.
- Finding a social support network is crucial.
- Begin a mindfulness practice to help with stress.
- Take advantage of informal or formal respite.
For families, I’ve written about the concept of self-care before. Self-care is way more than bubble-baths. Here are my essays:
Dr. Yona Lunsky also wrote a great piece about this topic for families called Save Some Love for Yourself.
As Susan importantly pointed out, kids with Down syndrome have high levels of empathy, meaning they are more in tune with our own moods and stress level. If we don’t overtly care for our own mental health, it will affect our kids. This alone is a good reason to at least start talking about mental wellness in safe spaces in our own community.
If you are hesitant to look at your own mental health, at least do it for your children. After all, your head is screwed onto your body. We are in such denial about the simple fact that human beings also have rich mental and emotional lives. You do not have to wait until you get cancer like I did to take care of your whole fine self.