Parent Carers Matter Too

Parents of disabled children live a life that most people just don’t see. For instance, instead of kissing her son goodnight, my friend Sarah gives her son his evening injection. Every evening. It bloody hurts. Both of them. But he is the one who screams out loud.

My friend Natasha manages a team of carers to support her daughter. She fills in endless application and assessment forms, writes and check reports, manages budgets, and juggles a whole range of care needs. And all this against a backdrop of increasing austerity measures which are designed to make every support task she does more challenging, more impossible to manage. If Natasha had a pressure dial the needle al would have long ago wobbled from ‘very tough’ to ‘total nightmare’. She's primed and ready to explode.

Last week our neighbour Chris queued for an hour at the theme park for a rapid access pass so his daughter with autism wouldn't have to queue.

Tom finally got a a disabled parking bay outside his house only to discover anyone could and would park in it.

Marysia was told her child couldn't join in with his cookery lesson because it wasn’t fair on his classmates that he has allergies.

These are the tales I want to tell. Commission me.