Special needs parenting: Talk to us

As I stood in the queue in the coffee shop earlier this week, inside the children’s hospital that has been our home for over four weeks, my attention was drawn to the little girl sat with a lady.

She may have been her mum or she could have been an auntie, maybe even a guardian or a foster mum.

These people were strangers and I don’t know their story.

The little girl had a feeding tube.

A tube that is placed directly through the nose into the stomach or bowel.

I looked over at her, I caught her gaze.

The new way that society works with the use of face masks to protect us all from this deadly entity that has brought the world to a standstill for over a year meant that she couldn’t see the warm smile I sent over to her direction.

But it was there. It wasn’t a smile of pity. It was a genuine smile.

I wondered what her story is.

She seemed happy and she played with a toy on the table.

That’s all we want for our children isn’t it? We want them to be happy and healthy.

Of course we all want our children to grow up, become successful and who knows? Maybe even change the world.

But ultimately we want our children to be happy and healthy.

I wished I’d been able to go over and talk to them but due to a combination of lack of confidence as well as social distancing measures that are currently in place and that need to be respected, I felt I couldn’t.

I don’t even know what I would’ve said.

I wouldn’t have wanted to appear rude, maybe I would’ve just let her know that we share a common denominator in that my child too has a feeding tube albeit his is now in his stomach.

It might’ve just been an exchange of those few words or it could’ve led to a full blown conversation.

Who knows?

As I collected my order and was about to leave I glanced over at them again.

Lots of thoughts ran through my head.

The main thought being I hoped they didn’t think I was being rude.

I smiled once again behind my mask as I walked back to the ward where my child was.

Often I have walked down the street where I have passed people who have blatantly stared at us as I push Jaxon around in his wheelchair, his tube trailing round the back leading to his feeding pump bag.

Sometimes people have stared as I’ve tried to assemble his chair in the car park.

There’s been many situations where I’ve felt the scrutiny of strangers gazing at us when we have been out and about.

A glance is one thing but to stare is unnecessary.

I can’t speak for others but it makes me incredibly uncomfortable.

Whilst it wouldn’t be what everybody would want, I’d much prefer those who are staring to come over and talk to us, even at a distance if social distancing measures remain in place.

“Be kind” was the motto at the beginning of 2020.

Staring isn’t kind, it’s rude and unnerving. Glancing over, smiling and giving a brief acknowledgement isn’t rude.

A smile can change somebody’s day.

But to glare at somebody because they may look different, they may be more vocal than you deem appropriate or because they are disabled can make them feel incredibly awkward.

It can make an already difficult situation a million times worse.

This particular experience got me thinking about all the times we’ve experienced prolonged stares from strangers.

In those early days when Jaxon was a baby and the world of disability was so new, all I wanted was to feel some sort of normality.

Strangers staring at us in the street made me feel even more isolated from society.

I wish those who chose to stare would’ve come up and spoke to me, asked me questions and gave me the friendly smile that could’ve changed my day.

Some did come and talk but occasionally their remarks would be less than helpful and leave me feeling utterly despondent about our life.

Some would ask questions, not intrusively, just through curiosity.

They were my favourite encounters and I’d welcome them going forward.

I’m very much a people person.

I have a page on Facebook where everything is laid bare when it comes to talking about my experience of parenting a child with complex medical needs.

I’m not afraid to share the ups and the downs.

I’m not afraid to publicly declare the pride I feel on a daily basis for my little human.

I definitely wouldn’t be afraid to share our story to a stranger in the street if we were approached in a kind manner.

So as the world does slowly return to the way it was before and in the future when social distancing is a thing of the past, if you see somebody who doesn’t quite fit your idea of normal, don’t just stop and stare.

Glance over and give them a smile.

If you feel confident enough, talk to them.

You never know, it could change their whole day.