All In The Same Boat

Hayley Goleniowska by Hayley Goleniowska Additional Needs

Hayley Goleniowska

Hayley Goleniowska

I'm the founder of Downs Side Up. It started as a way of sharing our story and resources with other parents with a child with Down's syndrome. The...

Pondering how to muster new words, I asked my husband where he thought I should start a monthly musing.

“At the beginning,” was his flippant reply.

And just before I dismissed this as a tricky-topic-to-tackle-another-time, I remembered Welcome to Holland by Perl Kingsley, the story that gets handed out on day one to many of us.

“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 simultaneously thinking we’d never travel as a family again, and that it was bitterly ironic to try to explain that to me with a travel story.

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

Now, with 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 how would I tell my new parent self differently?

I‘d say that I would still be heading to the same dream location I 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 tiredness and self-doubt along the way.

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 SEND 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 Adele 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 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 their table.

Some are lucky enough to know someone aboard already. Others are 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, 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 glad that I am in it with you all.

If you aren't familar with Welcome to Holland, you can read it here.


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