Families of disabled children can find the festive period less stressful if they take take a different approach to typical Christmas celebrations. Rachael Clark and Katherine Runswick-Cole, both parents of disabled children, explain how
Families of disabled children are just like any other family and face many of the same joys and challenges at Christmas, but for some families of disabled children and of children with special needs, Christmas is a time when it helps to do things a bit differently.
THERE’S A TREE IN THE HOUSE
A Christmas tree and decorations are at the heart of the picture perfect Christmas, but for some children they are just confusing. Why would you bring a tree into the house and clutter up the window sills with cards and the house with unfamiliar sparkly objects? For these children, preparation is the key by showing them photographs of last year’s tree or letting them see and touch the Christmas decorations before putting them up.
For some children, a social story might be useful for explaining that trees are usually brought into houses at Christmas and that this is OK. For other children, a timetable showing when the tree and other decorations will arrive and when they will all come down is important – this might be something you simply add to the advent calendar, if you have one.
For many children, decorating the tree is a Christmas joy, for others it is not – decorations are often fragile and delicate, so some fingers can struggle with putting them on the tree and what should be a treat becomes a frustrating chore. In the ‘perfect’ Christmas the family decorate the tree together, doing Christmas differently may mean that doesn’t happen.
For some children, the tree is a constant source of fascination – offering things to pull off, pick apart and eat! – and so a source of tension and anxiety as parents become locked into a battle to make sure the tree remains intact and the child safe. We know one family where the battle became so relentless that they abandoned the traditional tree and decorated the ceiling instead. The much admired ceiling decorations, safely out of reach, allowed the family to do Christmas decorations, albeit differently.
PRESENTS
Some children are happy not knowing what is in the oddly shaped parcel under the tree, for other children this can be a source of real anxiety. They want to know that the gift they asked for is really in that parcel, and not knowing is too much to bear. So, it may mean telling the child what is in the present or even showing it to them beforehand.
The immediate run-up to the big day can be eased by allowing children to open a small present every day, or every other day as this breaks the tension and reduces anxiety.
Beautifully wrapped presents look wonderful under the tree, but for many children a tightly wrapped present is a source of frustration – so much so that some children give up and refuse to open presents. Tissue paper makes the best wrapping paper for some children as it is easy to tear, for others a small amount of tape might be the answer - tightly knotted bows are not a good idea.
It is also helpful to take the present out of the box before wrapping it, especially if the present has been fixed tightly inside its cardboard box with wire. Tell friends and relatives your child’s wrapping needs, especially if the child is going to open a present in front of them!
FATHER CHRISTMAS
Father Christmas is often the source of presents at Christmas, but some children worry about a strange man with a beard coming into their room at night, even if he is bearing presents. Father Christmas can leave presents by the fireplace or under the tree and need never venture upstairs.
Most children enjoy the Father Christmas story and eventually realise that it is a story that they are happy to leave behind. However, some children will not reach that conclusion on their own. We know several families with teenage children where their belief in Father Christmas is still firm. Parents/carers worry about what other children will tell their child as they grow older and whether they, as parents/carers, should continue to collude with the Father Christmas story. This is a tricky one for families. Each child and family will be different.
You may decide you need to be direct with the young person or may decide to try to phase out Father Christmas over several years, gradually reducing the references to him until the young person is happy to let go. Or you may simply decide that the young person is so attached to Father Christmas that you just let it carry on, no matter what their age.
VISITORS
Father Christmas is not the only guest who can be a joy and a challenge during the festive period. Just like children, guests may need to be prepared for their visit! Be upfront, and if something is difficult for you and your child, say so! For example, tell your guests that your child needs tissue paper not wrapping paper and whether or not you want them to mention Father Christmas.
We know from experience that doing Christmas differently in front of relatives and friends can be stressful, especially when a child doesn’t want to join in or finds something ‘joyful’ a source of anxiety. So, sometimes, we know that families opt out – you may prefer to limit the number of guests and the time they spend in your house at Christmas.
EARLY YEARS SETTINGS
Many early years settings are sensitive to the challenges faced by young children at Christmas and recognise the difficulties children face from a mixture of excitement and uncertainty. They, like parents/carers, need to prepare children for the changes in routine and activities in the run-up to Christmas. Wherever possible, it is a good idea to keep the run-up to Christmas short. Singing carols in September is best avoided for all young children, even if the Christmas performance is less slick than it might have been, parents/carers will be grateful to the practitioners for not starting the Christmas excitement/anxiety early!
As for the Christmas play, seeing your child as Mary, Joseph or even a sheep can be the highlight of a parent/carer’s Christmas. Early years practitioners strive to make the performance special for families, which is no easy task.
Some children are reluctant to take part in the performance, and, sadly, we’ve witnessed unhappy children being dragged onto the stage. We know that this has often been done with the best of intentions but for parents/carers witnessing this act of ‘inclusion’ and for the children themselves it is traumatic. Similarly, we’ve known parents sit through a whole performance without their child ever making an appearance. Sitting in an audience with other families while your child is either excluded or ‘participating’ is agony for parents/carers, especially when they are already having to negotiate a host of other challenges at Christmas.
Many practitioners do recognise the potential problems and understand that sensitive communication with parents/carers and children is key to a happy performance. The extent to which a child participates may have to be negotiated with the practitioner, child and parents/carers wherever possible.
HAPPY CHRISTMAS
Finally, all families do Christmas differently. We suspect that the picture perfect Christmas is a myth that no family can live up to, but realising this may just be the key to having a happy Christmas.
Rachael Clark is the mother of a disabled child and campaigns for disabled children’s rights in her local area. Katherine Runswick-Cole is the mother of a disabled child and Research Fellow in Disability Studies and Psychology in the Research Institute of Health and Social Change at Manchester Metropolitan University. Contact: K.Runswick-Cole@mmu.ac.uk
MORE INFORMATION
For more information about Social Stories go to: www.thegraycenter.org/social-stories