I’m familiar with that knot, and it tends to flare up when the Momma bear in me is fighting an injustice that I know to be reality, but which I can’t accept.
As Elizabeth notes in her comment, there’s something taboo about the idea that disabilities could render a child incapable of friendship: “I've never seen it written…Those thoughts we of like mind share and never dare to write.”
At first I wanted to argue against this premise on the basis of semantics. Jennifer defines the word friendship in her post as an independent relationship that is reciprocal and voluntary. But does friendship have to be reciprocal? What if I “choose” to befriend someone who can’t actively reciprocate? Does that nullify the relationship?
And then there’s the notion of an independent relationship. Can a relationship be independent? Doesn’t that sound mutually exclusive?
I know what Jennifer means, that a conventional friendship has to be sewn and sustained by two independent children who can choose to participate over time, and do so without the support of others. The children need to be able to contact each other – in person, on the phone or online – and communicate. They need the language to understand and enjoy each other’s company without the intervention of others.
I guess we could argue that perhaps traditional friendship is not all it’s cracked up to be. Why not loosen up the definition to make it more flexible to children with special needs?
However, this line of reasoning merely distracts us from the painful reality that kids with severe disabilities in families like Jennifer's and mine don't have friends.
At our house, handfuls of children – friends of Ben’s siblings – traipse in and out. Ben (photo above) loves it when they’re around, and is sad when they leave.
He occasionally gets invited to a birthday party, though there have been years when not a single invitation arrived.
He’s cabbed to a school a terrific distance from our neighbourhood, and most of the students there are bussed from all over the city. We’ve tried inviting kids over, but visits need to be facilitated by us because of the communication barrier (Ben doesn’t speak and knows basic sign), and nothing enduring has occurred.
Wait! There was one typical boy from Ben’s previous alternative school who showed up at a movie theatre on his own last year for Ben’s birthday. And this summer, we made a breakthrough when Ben attended overnight camp. When we picked him up, every camper had a story about something they’d done with Ben. They seemed to genuinely know him and accept him as a friend.
At other times, we’ve invited every child from Ben’s segregated school class to a birthday party, and only one showed up. The teacher explained that when kids are bussed to school, many parents don’t take the time to drive their child to after-school events, or to reciprocate outreaches.
It breaks my heart when he stands at the window signing “friends – where?” and I don’t have one good reason as to why they didn’t come (or even RSVP!).
So as much as I’d like to argue that really our kids with significant disabilities do have friends, or have the same opportunities as our other kids to have friends, the reality is that they do not.
And while Jennifer may have reached a place where she can accept her son’s lack of friendships – because he does have meaningful interaction with family, paid caregivers and others – I have not.
That childhood could be friendless is inconceivable to me. My body rebels against the idea that a kid – any kid – can’t have friends.
6 comments:
I've been thinking a lot about the post, too, over the past week. And I'd say that I'm more on the side of heartbreak than acceptance regarding my daughter's social life (or lack thereof). I hate it. I'm not sure whether the sorrow is a matter of projection (my own) or whether Sophie, somewhere inside, is aware of it. I'm inspired to write a post, myself, about this and see what sorts of comments I get from the people who visit my blog.
Hi Elizabeth: I hope you do write a post -- I would just love to read it. For some reason I think of friendship as being like a human right that we are all entitled to.
Please do write about this. I would love to hear about your experiences and insights! And I hope others write about it and comment here too! It's one of those unspoken topics. lk
Jennifer here... I have a couple of thoughts:
The word 'befriend' makes me cringe (does that mean 'feel sorry for?', or 'pity'?) and I would say that it doesn't nullify the connection but it certainly doesn't qualify as friendship.
Might help also to put my article into context - I don't believe that Owen thinks he's missing out. If that were the case, I may indeed feel the heartache of his friendlessness. As things are now, I see that I am giving Owen as rich and full a life as possible, and that friendship for him (as I define it) is not part of the mix. He is surrounded by love and appreciation, and shares laughter and companionship with deeply caring, nurturing people. Because of his disabilities and lack of communication, his experience of relationships may never rise above those of a very young child - but it at least meets a basic human need to be seen and cared for.
I like Elizabeth's comment - I do think it's very easy to project our fears and desires onto our kids (me included!!) - and I love this forum for the opportunities for reflection. Thanks Louise :)
Hi Jennifer -- Thanks for your message.
No, I used the word befriend to mean someone who initiates a friendship. If the word has negative connotations, I wasn't aware of them. Cheers, Louise
Reading this post & the post prior to this one really affected me. I worked through my thoughts by writing a related post (Will he have friends?) on my blog. And that in turn caused another mom of a CP child to cry. Thank you for being so honest & brave in writing about it. I guess it's something a lot of mums with special needs kids easily relate to but find it hard to deal with.
Hi Humbledmum! Thank you so much for visiting BLOOM and sharing your thoughts on friendship! I see you are from Malaysia and enjoyed hearing about your son.
Readers can find your post on friendship at:
http://humbledmum-myjourney.blogspot.com/2009/09/will-he-have-friends.html
It is a really challenging topic -- I know sometimes I just don't want to think about it because it's too painful. But I do think it helps to work through how we feel and share with others.
Best wishes to you and your son and look forward to hearing more about life in Malaysia. Cheers! Louise
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