Thursday, December 15, 2011

Someone to Pinky Swear With

I have such fond memories of growing up and spending endless hours with my friends. We would play with our Barbie dolls, or build forts in the swamp behind our houses, or ride our bikes and skate. As we became teenagers, we would giggle about boys, try out makeup, and pull all the clothes out of our closets trying to find the exact right outfit for the school dance. My childhood was defined by those friendships, and by the passages through time that we shared.

But my beautiful daughter, Ashley, has never had and probably never will have similar experiences.

I have tried to encourage friendships between Ashley and her non-disabled peers, and often even other disabled peers. But those friendships never happen. A very few times, I would find a peer with a heart that wanted and tried to be a friend, but it never lasted. The lure of typical peers and typical activities would always win over communication difficulties, medical difficulties, and often limited responses from Ashley.

Ashley has never been invited to a birthday party or a sleepover. The only times she goes shopping at the mall is if we, her family, take her. She doesn’t talk or text on a phone, and she doesn’t share clothes or dreams with girlfriends. She has never been to a school dance or a school football game. She doesn’t have Facebook ‘friends’, and her teachers may refer to her ‘friends’ at school, but really they are not.

I don’t know how to facilitate those friendships. I don’t know how to create situations where friendships, lasting friendships, can happen naturally. And all that makes me very sad.

What about the others of you who have children with significant disabilities? Do your children have friends? How has that come about? And by friends, I don’t mean people who take pity on our children or view them as a ‘service project. I mean real friends. Friends like Paige, Rusty, and Diane from my past…

Someone please convince me that there is still hope.


Blue Turtle Garden said...

I think your post really sums up the huge gulf there is between the abled and the disabled.

I am disabled. I don't have friends in the way you described in your post. More importantly, I don't want to have friends like that - I would be overwhelmed and exhausted quickly. And posts like yours, which insist that I should want the same things and the same experiences that you have had, just increasing that "otherness", the degree of seperation that people like me and your daughter have to face daily.

I know you mean well - you think your daughter should experience the world as you have experienced it, and so naturally, you then assume she also wants the same things you want. But if close friendships really mattered to your daughter, I suspect she would find her own way to have friends. My advice would be to let her find her own path - please don't tell her what the path should be.

Ashley's Mom said...

Blue Turtle Garden, thank you for your comments.

I'm not saying Ashley has to have friendships the same way I experienced them, but I do believe she needs supportive people in her life - support beyond that which is paid for.

Ashley has a very full life within our family. But one day, I will no longer be here. Her life will change drastically, and I believe negatively, when the one person with whom she has her only strong bond is gone.

I also believe it is a parent's responsibility to help a child find their path(s). I do that for both my disabled and non-disabled children. I believe it is especially important given Ashley's unique disability. Not having two of the most important senses (deafblind), makes finding any path a challenge. I feel I would be remiss as a parent if I did not help her discover her life's way.