Our daughter, Jenny, is like a butterfly – always happy and always making others happy. She was born thirty-five years ago, and as she grew into her twenties, my husband and I began to hope that one day she could live independently of us, as we knew our other daughters would. It was always evident to us that she would need guidance and protection, but also that she could easily “tie her own shoes”. (National Film Board documentary, “Tying your Own Shoes”)
In September, 2003 Jenny moved into her own home with two friends and a caregiver. Jenny and my husband and I had traveled for about three years on a journey of house hunting, housemate hunting, caregiver searching, and furniture buying. The biggest challenge was finding the right caregiver. With the help of a close network of friends and advisors, built up through years of living with a daughter who is intellectually disabled, we found both a good caregiver and good housemates. We contemplated what supports we needed and eventually sought legal advice but decided not to use government support.
As we followed this journey, we were aware of the emotional bumps in the road. Jenny had to feel ready to make this move, and so did my husband and I. When driving her up to her house with clothes one day, Jenny asked, “Mum, is this forever?” I paused, then answered, “Yes. Is that OK?” To my great relief, I heard “Yes”. So much meaning – so few words.
We wanted Jenny to have her own home so that she could begin to feel what it was like to live without our daily presence and supervision. Through this, we wanted her to get that wonderful feeling of independence and control over her own environment, to the best of her abilities. And she did. She began to make more decisions about her own life, and to feel really good about it. While Jenny’s self-confidence has always been good, it soared with this newfound experience. She realized she was ready to leave school and join the working world – fewer holidays, but a pay cheque!
Jenny continues to thrive, participating in her own community, making new friends there, and exploring her neighborhood territory (shops, parks, restaurants).
We have had a few challenges, such as occasionally finding a new caregiver and a new housemate, but everyone in the house works together to face these challenges and come up with solutions. Jenny’s life has changed. She is really learning to be who she is.
As I have watched Jenny’s gradual transformation, I have felt so thankful that my husband and I have been able to give Jenny this gift of independence. But this capacity to help our daughter has lead to a frustrated desire to help other families do the same for their sons and daughters who are intellectually disabled. But how? I could not go out and buy 100 other homes. Then, in a moment of solitude about two summers ago, I had the thought of helping families help themselves. Many families can develop their own plan and carry it out themselves. They just need to see the path. I had done it and I could show them the path. Thus begun the first flicker of LIGHTS.
Now Community Living Toronto has partnered with me, and together with our board of directors, we will be able to release many more butterflies into this city of Toronto.