‘But he looks so... normal...’ and other unhelpful comments
Uuugh. It hasn’t happened often in recent years (the wheelchair/oxygen cylinder/suction machine kind of give it away) however it was a phrase we heard a lot when he was little. How exactly are you supposed to look with life-threatening epilepsy might I ask? Even now photos can be really deceptive.
The photo on this post is an old one, but a favourite – he was so, so proud of himself for managing to sit unsupported next to his Dad. To look at him here, he looks like any other happy healthy kid. In truth, this, like all photos, is a snapshot in time – a moment when he found his balance perfectly.
It lasted a matter of seconds, you can’t see his Dad’s hand carefully placed behind him ready to catch him as he lost that balance, seizures rapidly took over and he slept much of the afternoon away, protected by our friend’s wonderful dog (who along with us didn’t leave his side).
Then there’s the other extreme
. Those who see my boy and fail to see the clever, cheeky boy who can communicate, is a demon at boardgames, loves swimming and LEGO... instead focusing on the issues.
They see a disabled child, and miss all that he is and is capable of. It is entirely their loss as he won’t give them the time of day... he has a slightly evil habit of kicking people who talk over him in the shins then looking as innocent as possible. Can’t say I blame him. Assumptions about his abilities are a plague my son faces almost daily but he will never face them from those who love him
The only thing that will limit him is his imagination.
His most loved Aunty nicknamed him Spaceman (he loves stories about space, rockets and flying amongst the stars), his teachers continue to push him to achieve things he currently finds difficult and we will continue to cheer him on.
One of the greatest disservices anyone can do to another person is to write them off before they’ve even had the chance to try, able bodied or otherwise. Children with disabilities have enormous potential just like all others, they just need someone who believes in them and who will give them the confidence to spread their wings and learn to fly.