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Special Needs Parents - All in the Same Boat

15/07/2016 08:14 | Updated 15 July 2016
Albert Tan photo via Getty Images

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You may know the story Welcome to Holland by Perl Kingsley that gets handed out on day one to many of us. It tells of how becoming a parent to a child with special needs or a disability is like landing in a different European country to the one you'd planned a holiday in.

"There's been change in the flight plan and they've landed in Holland and that is where you must stay. You must buy new guide books and learn a whole new language."

"The pain of not going to Italy will never, ever go away but if you spend your life mourning the fact you may never be free to enjoy the very special place, the very lovely things... about Holland."

Many parents gain enormous comfort from its words, and perhaps it was just thrust at us too soon, or in a vain attempt to fix everything on day one, but somehow I have always shied away from it.

I clearly recall thinking we'd never travel as a family again as Natty's diagnosis of Down's syndrome was delivered, and that it was bitterly ironic to try to explain our new life path with a travel story.

Telling us that our life wasn't heading where we'd planned was crushing at that time.

Since reading of high termination rates for babies with Down's syndrome and a law which allows the euthanasia of disabled babies up to 60 days after birth in Holland, the parallel with landing there seems even more ironic.

So if not a tale about Holland, what would I tell my new parent self differently?

I'd say that we would still be heading to the same dream location we had planned all along.

One full of colour and ever-changing diversity. Nothing about becoming a parent had really altered after all, the same goals of happiness, friendship, love, togetherness and sharing our world with a small new person were the same.

There would always have been worry and exhaustion and self-doubt along the way anyway.

What had changed was how we were going to get to this destination. Our mode of transport had shifted from a jet plane flying high above the clouds, to a gently meandering paddle steamer.

Each parent passenger is unique, just as our children aren't created like neatly-stacked boarding passes. And the view from each seat varies.

Some of us prefer to hum to music on our headphones en route, while others choose to engage in conversation with their fellows.

There's always a confident one at the helm and outside crew are present to help make our journey more comfortable.

Some get travel sick before they find their sea legs. Others are angry about the perceived downgrade and the length of time the journey will take in comparison.

The wise, however, immediately use the extra time to enjoy a pot of tea and invite the wary to join their table.

Some are lucky enough to know someone aboard already. Others are already experienced sailors.

But despite the eclectic mix in that vessel, we are all heading in the same direction.
As one unit we cut through the waves - to a place where inclusion, equality, support and acceptance of our children is standard.

There might be someone who nabs a sun lounger with a towel once in a while, or talks is grating tones while you are trying to nap, but they are outnumbered by people who care about stopping you from falling overboard when the waters get choppy.

I for one am glad I'm in this boat. And I am grateful for the friendship of my wonderful travelling companions.


This post first appeared in Hayley Goleniowska's column at Firefly Community - Special Needs: Real life stories, issues and experiences of day to day life by parents and healthcare professionals.

This summer The Huffington Post UK is spearheading an initiative helping families thrive, with a focus on parent wellbeing, the challenges facing stay-at-home and working parents, friendships and navigating the landscape of modern parenting beyond the 2.4. To kickstart the campaign, Jamie Oliver will be guest editor on 15 July 2016, bringing a focus on feeding healthy families.

We'll be sharing stories and blogs with the hashtag #ThrivingFamilies and we'd like you to do the same. If you'd like to use our blogging platform to share your story, email ukblogteam@huffingtonpost.com to get involved. Jamie's new cookbook Super Food Family Classics, published by Penguin, is on sale at £26.

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