A Christmas message from Stephen, a parent whose son has been supported by KIDS including through our Hackney Playground. He writes about his experience of what Christmas with a disabled child is like for him and his family:

"Many parents find Christmas difficult. This is partly because of the practical challenges of making sure everything goes to plan: the meals, the presents, the cards, the decorations and so on. But it’s more because of the emotional ups and downs that are so much part of Christmas: the expectations and disappointments, family love but also the contempt that familiarity can breed, and the empty days when there’s not much to do except go for a walk or watch the TV.

Families with a disabled child often find it all that much more difficult. Just as every family is different, so every disabled child is different, and I can only speak as the father of Joey, a 21 year old with no speech, intractable epilepsy, and mild Autism Spectrum Disorder. But there are issues which I’m sure other families can relate to.

Although Joey’s not a fussy eater, he prefers simple food to the usual Christmas over-indulgence. And it’s hard to buy presents for Joey, who lives in a world of very simple wishes and needs. More significantly, he doesn’t like big, noisy family gatherings and absolutely hates raised voices, emotional tensions, and all the usual pitfalls of a family Christmas. And looking after Joey is pretty hard work and it’s difficult to make the Christmas break into the holiday that families without disabled children seem to enjoy.

And then there’s his epilepsy, which has no respect for seasons. We have to remember to give Joey his medication four times a day, whatever else is happening. And I’ll always remember calling an ambulance early on Boxing Day morning  because Joey was in status (when the usual anticonvulsants aren’t working): I’ll confess to having drunk too much red wine the day before, and spent the whole morning in A and E with a terrible hangover. Which didn’t stop the amazing ambulance team and staff at the local hospital from treating both of us with respect and care! They fixed Joey’s epilepsy but my self-inflicted wounds were harder to cure.

It’s the emotions that I find most challenging. Christmas, rightly, is a time for the family, with an emphasis on children and young people, and all their amazing achievements. But, as with all such communal moments, my feelings are mixed. Yes, I can celebrate the little steps Joey makes each year; and, yes, I can be thankful that the epilepsy is (currently) under control; and, yes, the whole family can take pleasure in showing Joey love and care and affection. But I still find myself mourning what could have been, when I see my 21 year old take more pleasure in the sound of the wrapping paper than in the present inside, watch him mesmerised by the lights on the Christmas tree like a small child, and when he goes to bed at 8.30 just when the festivities are beginning to get interesting. Being constantly reminded of the lives of most children and young people reminds me of just how different Joey is.

Christmas is an amazing time of year, and in a properly organized world Joey - and all disabled children and young people - would help give a real meaning to its message of love and care for the most vulnerable. Because, as so often, Joey turns the fixed hierarchies upside down, and helps me see everything, including Christmas, in a new light. I suspect that’s something most families of disabled children can agree on."

 Stephen and Joey a few years ago 

 Joey and his sister at Hackney Playground

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