What ACT Means to Me

Since my son became an adult, I’ve been searching for family support in our Down syndrome community.

Anybody who has a loved one in the disability community knows that if we want change, we have to roll up our sleeves and initiate it ourselves. That’s why families become Board members, founders and organizers.

Twenty years ago with two other moms, I began a peer support program for brand new families who had a baby with Down syndrome.  I was trained in peer support by the Canadian Down Syndrome Society and we offered resources and support to new families who were in the midst of a new diagnosis. 

I found after many visits, beyond sharing information about services, our most important work ended up being celebrating that new baby who had Down syndrome. 

To this day, I still give talks to health professionals that emphasize saying ‘congratulations’ instead of ‘I’m sorry’ to families with a new diagnosis. 

As my son Aaron has grown up over the past twenty-two years, the notion of celebration stuck with me. Celebration isn’t about being Pollyanna about challenges in society and systems when one has a disabled kid. It is about accepting our children, warts and all, and being honest about the hard times.

Acceptance has not been a linear journey, particularly during the turbulent adolescent times. When Aaron graduated from high school, I realized how much I needed peer support again. I had lost many family connections as I became busy with school advocacy.

Enter Acceptance and Commitment Training. I was drawn to ACT because of the ‘A’ in it.  I’ll be honest here – it took me a good 12 years to accept Aaron’s Down syndrome diagnosis and the fact that the trajectory of my life changed – including my career, my identity and financial situation - when he was diagnosed. 

As Aaron matured into an adult, I realized that I needed to accept my life as it was now. I often said to my husband, “This isn’t how I thought my life would turn out.” While working on accepting Aaron, I was struggling to accept my own reality.

I met Lee Steel in 2019 at a storytelling workshop at CAMH and we kept in touch through the pandemic. I was intrigued when she told me about ACT. A training that centres on me as a person and not my loved ones? No peer support program had ever offered that perspective.

While ACT began with families who have loved ones with autism, I have found over the years that families who have kids with different intellectual and developmental diagnoses have more in common than differences. We all struggle in the same way – with identity, acceptance, the ‘fixing’ model, systems and society. 

Because ACT isn’t focused on our kids, it wasn’t our kid’s diagnosis that mattered. It was our experience as caregivers and human beings that tied us together.

I admire the tenacity and organizational skills of families in the autism community and think that our Down syndrome community could learn from them. So I vowed to find a way to bring ACT to our families too.

This brings me to present day. I have taken the ACT Facilitator training and have been attending Lee’s regular ACT practice sessions for over a year.

ACT has brought me peace in my heart. No matter your child’s diagnosis or your circumstances, we all deserve peace in our hearts. ACT gives me the gift of peace.

Ram Dass says, “We are all just walking each other home.” ACT has helped me start to find myself again. I’m grateful for everybody in ACT workshops and practice sessions that has walked alongside me as I make my way home.

This essay was originally published in ACT's Community of Practice Newsletter in January 2026.