Why is He in That Chair?

Posted by Amy Cameron on 16th November 2018 Additional Needs, Disabilities

Just a few weeks ago we celebrated the miracle milestone of Zac starting nursery.

Having SMA type 1 meant that this was a milestone we did not know if Zac would see and although it was definitely an occasion to celebrate, it also brought feelings of fear and anxiety for me as a mama.

Zac was diagnosed at 17 months with SMA – a neuromuscular, life limiting condition.

Since then I’ve gotten used to the stares, the questions and the interest in my son’s life. I’m okay with people asking most things and I like to answer as honestly and as openly as I can.

I don’t mind people asking about Zac’s feeding tube, his physio routines, his hospital visits or his treatment but I do find people asking about life expectancy is a step too far.

I can answer these questions as a mum.

I can choose which ones to answer in detail and which ones to ignore and I can choose to protect Zac in my answers but I was afraid nursery would bring questions that Zac wouldn’t be able to answer and that it would also cause Zac to ask his own questions.

The day for starting nursery arrived and I wheeled Zac’s bright green superhero wheelchair into the foyer and then I transferred him from this chair into his big blue nursery chair.

I fitted on his tray so he could access the toys and we were good to go meet the other children.

“Why is he in that chair?” one curious little boy asked.

I answered simply “Zac needs his wheels to get around the nursery as his legs aren’t strong enough”. I waited for the further questions, waited for their reaction, waited for the curiosity to think up something else but all that followed was “oh do you want to play”.

In that single moment I saw a group of children who didn’t need to question and they didn’t need answers – they simply accepted Zac for who he is.

We’ve been at nursery for a few weeks now and since that first question there have been no more.

Zac’s chair is always surrounded by friends to play with; the children excitedly bring him cars, trains and building bricks to play on his tray.

They don’t question Zac’s ability and it’s almost like they instinctively know; during pumpkin carving a little boy came over to Zac and helped him roll the pumpkin when it was his turn, a little girl brought Zac the small light weight trains because in her words “Zac has tiny hands so likes tiny trains”.

I see these lovely children accepting Zac every day.

They don’t need to know what his condition is, they aren’t interested in his medication, they don’t get weighed down by worries of his future, they just see Zac and want to play and have fun.

I’m sure as Zac gets older there will be questions from his friends as they start to realise he’s different but for now it makes my heart very happy to know that Zac is accepted for Zac, he’s accepted for his different kind of normal – no questions asked.