One of the first things I worried about, as I lay in hospital, recovering from an emergency Caesarean section, was: How would my daughter be treated?
You may think that I was putting the cart before the horse. After all, my daughter, Margaret, was less than 24 hours old, and may very well be flown to Halifax, NS from PEI due to possibly unstable congenital heart defects. Still, there it was, staring me in the face. My daughter was different. She was born with Down syndrome. I knew two things for sure. I loved her unconditionally. I was committed to helping her create a life for herself.
I needn’t have worried. From an early age, Marg made friends easily. She was non-verbal, but never had a problem getting her point across. She was enrolled at a regular daycare center from 2 years old and is still friends with many of those same classmates today.
I paid special attention to whom she seemed to gravitate towards and kept lines of communication open between her caregivers, her pals, and myself. Frequent and constant communication ensured I knew who her friends were. When she was young, I set up “playdates” for her. Now that she is older (grade 8), and uses an iPad, she can let me know who she would like me to call on her behalf.
When it became apparent that Marg would always need some kind of supervision, I helped her cultivate her friendships so that when the time came that the social divide between her and her peers started to widen, most of her friends have moved into a guardian role yet they still hang out as peers. For example, Marg comes home on the bus after school most days with a peer her own age. These peers are responsible yet respectful of Marg and truly enjoy being with her.
Don’t get me wrong. These peers have a lot of responsibility on their shoulders when they come home with her and are accountable for her safety and well-being. Margaret’s funding through the province of PEI ensures that I am able to put in a regular workday while Marg is hanging with a friend and is safe.
Am I paying for her to have friends? No. On several occasions, these peers put in extra time and refuse compensation for it. It is obvious to me in the way they interact that they are friends first. Of course, there are still the parties and sleepovers to which she is invited and these are not guardianship situations. Her friends’ parents like having her around too!
People tell me that we are so lucky to have such great people around Marg. Yes and no.
Yes, we are blessed to have such wonderful people around us, but it is not luck. It is a concerted effort to help Marg create a life of inclusion. Now that she is older, I am proud to say that a lot of it happens naturally.