A Christmas message from Stephen
He writes about his experience of what Christmas with his 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: family gatherings, travelling upcountry, 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 problems that families can breed, and the empty days when there’s not much to do.
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.
He prefers simple food to the usual Christmas over-indulgence. And it’s hard to engage him, since he 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.
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 fascinated by the Christmas lights like a small child, and when he goes to bed at 20.30 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 priorities 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.”
HAVE A PEACEFUL AND INCLUSIVE CHRISTMAS TIME WITH ALL YOU LOVE
A Christmas message for parents and caregivers of children with disabilities
To the parents and caregivers who have to walk away from the invites, stay home this season or can’t partake in the holiday hustle, just breathe, you’re doing a great job. To the parents and caregivers who have to sit in a different room, away from the party, away from the noise, the smells and bright lights. Keep going. For those of you who have to bring special food, a special equipment, a special gift, don’t feel bad, you are providing support for your child even if others don’t understand it. Be proud of all your hard work and be thrilled when others want to take part in joining you and your child in their world instead of having expectations of joining theirs. You got this!
MERRY CHRISTMAS