Everybody deserves to have friends, a person or people who love and care about them. For a special needs child, this can be the biggest challenge of all. Kilee is profoundly autistic; she is 15 years old and has never had a friend. Kilee has limited language abilities so she cannot tell us how she feels, or what she dreams about, or what she hopes for. She can't even tell us she would like to have a friend. With words, at least.
Kilee has never been invited to a birthday party, or a Christmas party, or a play date with a child her age. When I came into Kilee's life four years ago as her full-time stepparent, I thought this was unique to Kilee. After all, Kilee was prone to outbursts -- she could roar and stomp with the best of them, an expression of frustration that was a little "abnormal" as a toddler but downright impressive and even scary when she grew in height and stature. If she really got going she would pull out chunks of her own hair, and if you got to close to her at these times, she might pull out a chunk of somebody else's.
At one time or another, she has left an impression on pretty well every classroom or sports team she has been part of. So I kind of got it, that Kilee could be a handful, and maybe she intimidated others with her displays of intensity. And then there is language, or lack of it, a pretty hard bridge to cross when communicating to someone who has trouble responding to questions, never mind initiating conversation.
The Kilee I know, though, has a beautiful spirit and a sweetness that makes her easy to love. My sister Daniele said it to me the other day: "I fell in love with her instantly!" The smallest of things delight her -- a handful of her favorite nut makings, the suggestion of doing her craft beads, the music on her iPod. There are not many teenagers of 15 that express their joy and affection for others as openly as Kilee does. Kilee brings a lot of joy to our lives and I am certain that there are kids who are empathetic and patient enough to appreciate her gifts.
Kilee is showing her dad and me that she wants to socialize with kids her own age. Every time one of my children's friends would come over, she lights up, often she starts laughing, or blush with excitement. As Andre Picard wrote in an article in the Globe and Mail about the isolation of a special needs child, friendship seems to be more difficult for kids with special needs as they get older.
Teenagers want to hang out with other teenagers and do things, and there are so many things Kilee can't do. They also become more independent about who they want to hang out with, and parents' messages about inclusion can't be forced onto them. As our kids have gotten more involved with sleepovers at friends' houses and parties on weekends, the gap between Kilee's life and that of a neurologically normal child seems to have gotten much larger.
My children play with Kilee, they will play Jenga Kilee's way -- which is to scream with delight when the wooden tower of blocks crashes to the ground; my daughter will help Kilee colour and paint; they both will walk the dog with her or take her on a run skiing. Kilee loves when my kids play with her, and I wonder if she realizes this is family, not friends; and I wonder if it matters.
I long for another child to love Kilee just for who she is, to share her delight at bursting bubbles, at pouring paint out of the container, over and over and over again. I long for Kilee to have a friend who isn't afraid of her when she escalates, or suddenly bites her hand and stomps her feet. Sometimes, as our other three children plan their weekend around sleepovers and parties, I wish for it as much as I have wished for anything for my other children.
The longer that I think about it, the more I wonder if the problem is not Kilee but my own perception of what Kilee should have from life, my own biased judgment about what a good life looks like. I observe Kilee's isolation, but I don't always reflect on the many positive interactions she has with other teenagers on a weekly basis -- a young girl at school who chooses to come into Kilee's classroom and read magazines with her each week.
I remember seven-year-old Molly last week, laughing with Kilee as they played Angry Birds on the iPod together; I think about dance class and the four special girls who dance each week with Kilee, how they hold her hand as she enters the circle, led by the beautiful energy of her teacher Tracy. These are friends. Perhaps not in the same way that the other kids have friends who sleep over or talk on the phone together, but friends. These teenage girls know Kilee, they dance with her, they join her when she is laughing, and look at her quizzically and ask what's wrong if she cries. I think of Megan, an adult friend who has chosen to stay in Kilee's life since she was born, taking her for walks, to her home for dinner, to the park to play.
Maybe it is my own fear, my fear that Kilee will be alone, that no one will love her, which feeds my insecurity about her relationships. After all, for all the people who approach Kilee with fear, or indifference, there are many others in her life who treat her with respect, forgive her outbursts and seek to build a relationship with her. Loneliness is the greatest disability a person can have, and with all the challenges Kilee already has, I want her to have one of life's greatest joys -- real friendship. Maybe one day Kilee will develop a friendship, one that is give and take, and one that is lasting and joyful. On the other hand, perhaps I need to celebrate the simple fact that there are people in Kilee's life who love her, and love is powerful regardless of whether it is coming from a parent, a stepsister, a caregiver or a friend.