Monday, 29 March 2010

The sisterhood

Today, I feel a little more invisible than usual. It's time for my annual ophthalmology appointment, so I've left off the makeup and am wearing glasses. I could get depressed about looking less appealing than usual, but, heck, I'm over thirty-five. Nobody looks at me anyway. It's not all bad; I've discovered that I can cry in public -- no one notices.

Invisibility doesn't just come from failing to be young. Having a special needs child can make you vanish into the scenery more effectively than Harry Potter's magic cloak. I've discussed this with other "special needs mums". One of them described chatting with another mum while waiting outside the school for her son on the autism spectrum. A woman walked up to the other mum and arranged a play date between their respective children. It was as if my friend were not standing there. She tells me this is a regular occurrence. No one ever approaches to make a play date with her son.

I believe her. I'd been at that school for eight years: four with neuro-typical (albeit gifted) older daughter and four with PDD-NOS younger daughter. I was visible and included the first four; invisible and excluded the second four, even though I was at the school every day -- exactly like my daughters.

Actually, invisibility has its own blessings, because the only time you become visible with a special needs child is when there's a problem. One of our national papers here in Canada is The Globe and Mail which, for the past fifteen years or so, has had a feature called "Facts and Arguments", a daily essay submitted by a G&M reader. Not long ago, a heart-breaking piece appeared, written by a special needs mum who is on that still-hopeful-not-yet-exhausted opening edge of seeing her child through school. In an effort to help classmates and their parents understand about her son, who is living with Down's Syndrome, she wrote a letter and the teacher distributed it to the class families. She was approached by a parent who said she was "surprised at the letter" then asked (wait for it) why this mother had not had prenatal testing. This gentle mother managed a polite response, stumbled to her car and spent the rest of the morning crying:

What I should have asked the mom in the playground was, “What if your daughter was in a car accident tomorrow and had a brain injury? Would you love her any less?”

Oh, darlin', I've been there too, leaning unseen against a tree in the little park below the school, gasping and weeping. For myself, what I long to ask those other parents with neuro-typical children is this: "Do you really think that your child's strengths and gifts are your doing? Do you really think that my child's disabilities are my doing? Because, dear people, all it takes is an illness or an accident. Then you can be in my little club."

I have a secret name for my little club. I call it The Sisterhood. I realize that dads are in this too, but it's the mums that I encounter. Have you ever heard of "gaydar"? I'm reasonably certain that there's a similar sort of sense between special needs mums because ever since I came to Hades (mere months after younger daughter was first "identified"), the only true connections I seem to have made have been with others in The Sisterhood, and there's usually been an attraction of sorts, even before we learn about each other's children. Like any club, we have our own sort of competitions; a meeting over coffee includes support, sympathy, and the underlying gauging of whose life is more challenging and whose child is more, or less, challenged. I usually seem to lose in the first category and win in the second, and feel that the other Sister leaves thinking her child is making better progress than mine.

It's a service I provide.

We share our frustrations over therapy, teachers, bone-headed comments (see above), bullying....

Oh yes, bullying. Sometimes it seems our kids are invisible and that's when they fall through the cracks of the school system, but our kids are different, not a desirable thing in school culture and that makes them highly visible targets.

Not long ago, this article appeared in our local paper, about a boy from Alma, Québec, which is about 600 kilometres (a bit less than 400 miles) from Hades. He's been missing for over a year and the events leading up to his disappearance were uncomfortably familiar.

It was sadness for him and his mother (one of The Sisterhood) that had me riding in the bus, listening to Kate Rusby:
Winter comes around,
And he knows he is homeward bound,
His heartbeat is the only sound he's known,

He once lost his way,
He knows now that was yesterday,
He fell down on his knees to pray for home.

We'll sing to the morning,
We'll sing till the bells they sound,
We'll sing till the wandering soul is found.

He's found his way at last,
With each turn a new bond was cast,
His friends now hold him steady fast and true.

With peace in his eyes,
The fear now is a pain in the skies,
With friends near he sees only skies of blue

It's clearer every day,
He knows now he is here to stay,
He cares not why he went away so long.

He's found where he belongs,
He know he's been here all along,
He is smiling as he joins his friends in song.

We'll sing to the morning,
We'll sing till the bells they sound,
We'll sing till the wandering soul is found.

And there it is -- all our invisible hopes and dreams for these children who were sent to us. Pipe-dreams, perhaps, but it's what we hold on to.

Oh, my Sisters. This song is for you and them.

1 comment:

Rob said...

Oh Persephone. As the father of a son with very mild Asperger's (now nearly 18 and only occasionally showing any sign of not being a typical teenager, if drummers are ever typical) I can just begin to understand how you feel. Good luck.