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Saturday, 2 February 2013

Holland can Feck Off

Lots of you will know the poem, "welcome to holland". Well at the moment I am not managing very well grappling with my Dutch phrase book and my map has a massive whole in the middle so I have no idea where I am going. Problem is, anyone I ask doesn't know either.. There's no label, no diagnosis.

"Just say Global Developmental Delay" I am told. Thats a bit like being told to pretend I am in Spain rather than Holland or the Italy I signed up for as Tiddler is doing so very well in so many ways. Squeezing her into a label for convenience just isn't on.

So we'll carry on, fighting her corner, shouting loudly.

In the meantime, it seems there are bigger gaps than we had thought between her actual abilities and those "expected" of her. This makes it all the more important for those healthcare pros to do their thing, do what they say they will do, and see past the lack of labels to the reality. My little girl has a world full of energy, talent and promise but we need help to unlock it all.

For those of you who don't know about the poem I refer to above here it is:


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thanks for reading