The downside of special

A few weeks ago Sue Robins e-mailed me a copy of The Downside of Special: Parenting a Child with Special Needs.

'Stress, guilt and uncertainty are the norm for parents of children with developmental disabilities,' reads the deck. 'But instead of doling out pity and those can’t-you-control-your-kid? glares, one mom asks for your support and a little understanding.'

Sue, a recent chair of the Canadian Family Advisory Network, told me this piece in Canadian Family magazine (image above from its website) was generating a lot of conversation in the special-needs community in Edmonton.

"I don't agree with all of the sentiments in the article, but I like that it tackled this topic," Sue said. "What I thought was interesting was that it looked at how it's hard for me as a parent of a child who's different -- because that makes me different too! I feel different in public, and especially different at my son's school. And I find that hard. I haven't seen that written about before."

I was delighted to see a mainstream parenting magazine raising awareness of the needs of parents of children with disabilities! I thought the author nailed a number of the emotions and situations we experience, though her tone was a bit flippant in places.

Some of the comments that resonated with me:

Driving home, I watched my son in the rearview mirror, and he looked the same. Yet I saw him differently; his beauty had been violated, somehow, by Miss P.'s words. But my overriding feeling was one of shame. I hadn't heard concern in her voice,... only judgment: I'd produced a problem child.

There's also, for many parents, a  profound sense of loneliness. You feel you're out in the cold with your nose pressed up against the glass of normal experience, watching as your friends sail past, merrily oblivious, with their typically developing children.

...Family and friends may pull themselves away...A more subtle form of rejection occurs when people try to minimize your child's issues...When others deny your reality, it no longer feels safe to talk about it.

No one talks much about the anger, the embarrassment, the despair -- or the mind-blowing cost of treatment and the extreme difficulty of navigating the school system. All of this helps explain why parents so often feel as I did: cut off, with unacceptable emotions best kept to themselves and no clue what to do next.

Having fun and playing with your child often fall by the wayside because there's so much work to do and so little help.

Having a child with special needs radically changes the texture of motherhood...many moms become uber-researchers, activists and tireless networkers. "You go from mother to case manager," says Tess.

Love is there, fuelling your determination, but so is bloody-minded detachment, the same kind you see in personal trainers.

The strain all of this puts on a marriage can be extreme.

Once my son had a major meltdown, raging, screaming and crying as though he were being tortured, right outside the door of the kindergarten where several parents were already agitating for his expulsion...I felt a range of emotions, but the strongest was not empathy for my sweet, complicated little boy, who was clearly in profound distress. It was embarrassment...I wished at that moment not to be his mother, not to have to deal with this. This is another hard truth about having a child with special needs: The things that are most endearing and lovable about the child may be invisible to outsiders, while the things that are mortifying are all too visible.

Read the article and let us know what you think. And leave a comment -- there are no comments yet! I was disappointed that the author didn't use her real name -- and none of the people interviewed did either. I was surprised given the whole point of the story was to raise awareness and generate more understanding of our experience in the general public. How can we do that if we're not open about who we are?

Let us know your thoughts! Thanks, Louise