Poems and resources

Should I conform? 

Should I act ‘right’? 

Be neurotypical 

My quirks out of sight 

Should I make eye contact 

So you feel okay? 

Listen to small talk 

That you need to say? 

Should I wear make up 

My hair neatly styled? 
That joke I didn’t get –  

Should I have smiled? 

Should I be quiet 

Not say what I think? 

Or should I be me 

And just be out of sync? 

Emma (2021) 

He is wired differently 

To you and me, 

This child of mine. 

He doesn't like loud noises 

Or dark spaces 

Or strangers touching his head. 

His brain can see in an instant the pattern, 

The layout, 

The solution to a puzzle. 

He can tell you every gun invented. 

The year, 

The range, 

The calibre. 

But he cannot tie his shoelaces at 11. 

He reads the periodic table for pleasure. 

Loves fusion 

And nanotechnology 

And Crispr 

But he cannot tell the time from a clock face. 

He is different this child of mine. 

Has no filters, 

Speaks his mind, 

Has no pause button 

But he hugs me and tells me he loves me every day. 

He has triggers this child of mine, 

Open-mouthed chewing, 

Enclosed spaces, 

Broken routines 

But he'll rescue drowning insects every time. 

He is different this child of mine, 

A challenge, 

A frustration, 

A despair 

But his humour makes me laugh every day. 

He is different this child of mine, 

He is loving, 

He is kind, 

He is generous 

But the world judges, 

Sees only the outbursts and over-reactions. 

He is wired differently this child of mine, 

And my role is to guide him, 

Soothe him, 

Give him tools 

To negotiate this confusing world of emotion he fails to grasp. 

He is different this child of mine, 

His name is Tristan, 

Not boy, 

Not kid. 

I hope that his road through life will be one of kindness and understanding. 

Dr Sophie Billington 

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 guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.  

So you must go out and buy a new guidebook. 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, 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."  

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

Written by Emily Perl Kingsley