What I wish they knew

The past year has seen enormous change for the Dude. Puberty has kicked in, hard, and he is now very much a teenager complete with long sighs and eye rolls!

It has also brought enormous frustration for both me and his Dad, and I have no doubt the Dude himself. Due to his complexity, our boy attends a SEN school for children with complex needs. Unlike in mainstream schools, the children are grouped into classes based on ability rather than age, and this can bring unique challenges.

One of the biggest of these is the assumption that because the Dude is medically complex and in a wheelchair with limited control over his body movements, he must be cognitively functioning at the level of a much younger child. This, dear Reader, is most definitely NOT the case.

It must be incredibly difficult to try and engage/teach such a diverse range of students. Not only diverse in age but in ability, cognition and mobility. I have sat through numerous meetings where I have had to fight the instinct to scream, simply because professionals are missing the child. Instead, they see the disability.

I wish they knew my boy like we do.

I wish they could see how he plays table top games with his carers on a Saturday afternoon; watching him as he lets go of the dice so they can fall into the tray. Seeing him answer ‘yes’ or ‘no’ to questions from his carer when she asks whether he wants to attack another player or take a different action. I wish they could see how his eyes sparkle and he grins from ear to ear as he realises that he’s winning (again).

I wish they could see how excited he gets when we go to his favourite shop to look at his beloved LEGO. How he seems to look away from the rows of colourful boxes, but if you watch carefully you’ll see his eyes dart between the sets. You’d see how his eyes linger on certain sets, giving you the que to ask him ‘yes’ or ‘no’ – would he like to look at that box? Watching as he clearly thinks before moving his head left for ‘yes’ or right for ‘no’.

I wish they could see how he uses all his concentration to move his hand to gently hold mine when he can see I’m exhausted after a long day, or another medical appointment. Or how he relaxes into me or his Dad for a cuddle when we lower him into his hot tub, allowing his muscles to fully relax as the water works its magic.

I wish they could see beyond the wheelchair and really see the clever, funny, gentle, wise young man my baby is growing into.