I haven’t been to a Down syndrome conference in many years. As a young mom, I was a conference keener. I attended World Down Syndrome Congresses, our national conference and scores of local events. I spoke, I volunteered, I organized. Then I got very tired. I became pre-occupied with advocating for Aaron in school and I disappeared from the conference circuit for the next ten years.
Just last year, I ventured out to a talk about housing. There were three moms on a panel. They spoke about how they pooled their time, talents and resources to come up with creative solutions to counter the struggle to find housing in the Lower Mainland. I learned from them that you can’t depend on the government for anything. I was also reminded that us families need each other. I realized that I had to start showing up again.
So this weekend, Aaron and I went to the Canadian Down Syndrome Conference in Victoria. There I was moved to tears. I had a fabulous time catching up with other moms. And I felt terribly proud of my son.
My main intention for the conference was for Aaron to have fun in the Teen Program. (This was accomplished). For my own experience, my dear friend Helga wisely said, If I learn even one thing to take away from the conference, I’ll be happy. I took her lead and distilled all my learnings from the sessions to one simple take-away:
Provide opportunities for people with Down syndrome to speak for themselves. And most of all, listen to them.
The sessions each offered a lesson to take away and apply to real life. Here’s my summary of what I learned from each break-out session.
The guru of inclusive learning is a crackerjack storyteller. From her I learned about the concept of congregation. She said conferences like this one for Down syndrome are about congregation not segregation. This means we choose to be together as a community because we want to – not because we are forced to. May we all seek and build our own congregations with groups of people where we are welcomed and feel a sense of belonging.
Dr. Dennis McGuire
The former Director of the Psychosocial Service for the Adult Down Syndrome Center in Chicago, Dr. McGuire renewed my admiration for my son and other people with Down syndrome. Dr. McGuire explained the positive aspects of behaviours like grooves and self-talk. His deep respect and love for people with Down syndrome came through. I appreciated his strength-based approach that helped me understand how resourceful Aaron actually is as he navigates his days in a sometimes-hostile world.
Ah sexual health, everybody’s favourite awkward topic. From Mary I learned that sexual education is not only about sex. It Is about learning how to be a friend and a respectful partner. It is essential for us to teach Aaron how to be a good man. She also showed the video the Guest Room, which offered the poignant message that everybody grows up.
This session won the prize for my favourite unexpected break-out session. Elaine presented about starting a self-advocacy group for adults with Down syndrome. I loved this talk and was glad I picked it. The best part? Adults with Down syndrome with all speaking abilities presented their perspectives:
The group taught me that we are not alone. I have more confidence to speak and I am not afraid to share my ideas. -Self-Advocate
I learn so much from the wisdom of moms who have older children. My main take-away – to take the time to listen to people with Down syndrome themselves – was reinforced in this session.
VATTA Panel, moderated by Tamara Taggart
This was the best. Six adults with Down syndrome shared their experiences about growing up, working and moving out of their parents’ home. The panel was hilarious, heartfelt and real. Tamara did an awesome job of moderating the lively, passionate panelists. My take-away was from a mom of one of the participants. She said, My son has surprised me every step of the way. I need to allow Aaron the space to surprise me. This means giving up some control.
The challenge after every conference is to figure out a way to integrate the conference learnings in real life. My commitment is to continue to work on my own tendencies to over-protect and hover over my son.
My take-away was put to the test a few hours later. On the way home, Aaron said he wanted to walk around the ferry by himself. I protested, worried he’d get lost on the many decks. I have my phone with me Mom, he said firmly. I want to be independent. It doesn’t get any more clearer than that. Listen to the people with Down syndrome.
OK, I said hesitantly, and off he went. He returned about 20 minutes later with a big smile on his face, pleased to have found some freedom. The hardest part of parenting has always been letting my children go. But everybody has a right to grow up, including my son with Down syndrome. I’m not sure how to do that, but I have a feeling if I just take the time to listen, Aaron will show me the way.