Isla, has a very rare genetic disorder called Trisomy 9 Mosacism (T9M). She can’t walk or talk and suffers from severe global development delay. Her mum writes about the challenges that Christmas bring for Isla and why home is her favourite place to be.

Keeping things traditional for the family

For most families, Christmas is a time of celebration and fun. We try to ensure that our Christmas is as normal as it can be, as Isla has two older sisters who are typical 10 and 8 year olds. They enjoy the usual Christmas activities – preparing Christmas lists for Santa, helping decorate the Christmas tree, wrapping presents, sending Christmas cards and attending nativity plays. Isla, on the other hand doesn’t understand the concept of Christmas so, for her, it’s like any other time of the year – just a bit more colourful with a lot more sensory overload.

We find it difficult and stressful around this time of year to attend events together as a family. What other families enjoy, Isla and I can become overwhelmed by. This is due to the increase in crowds and queues of people. Sometimes outdoor events can’t guarantee disabled access which can really restrict our choices. We therefore tend to go to things separately (one of us will take the other children). It’s difficult not to experience feelings of guilt as Isla does miss out on the excitement and anticipation that her sisters enjoy – particularly at this time of year.

Keeping things familiar for Isla

Home is Isla’s place of solitude and relative calm. She feels uncomfortable when unfamiliar people come to her safe place so it’s not a time for us to invite friends over for lunch/dinner. Isla doesn’t expect or open any presents on Christmas day due to her lack of understanding and she doesn’t tend to play immediately with the toys that she receives as gifts from other family members. She gravitates back to the toys she knows and feels comfortable with. This can prove difficult to explain when our relatives ask if she likes their gift but they are starting to understand.

Christmas can be challenging time of year for our family but there is a lot of happiness, fun and love in our home during the festive period which Isla is very much a part of.