With Christmas approaching, we can see many changes around us. From decorations and lights appearing, to Christmas foods and gifts in the shops. This time of year can be a great opportunity for families to come together, however it can also bring changes to environments and routines, which can be unsettling for many with fragile X. In addition to this, there may be new smells, sights and bright lights, which could cause sensory overload.
Here are some tips which we hope will support you and your loved ones over the festive season. These tips can be helpful for adults and children with fragile X.
Before the big day:
• Try using a visual Christmas countdown calendar: Please email me alison@fragilex.org.uk and I can send you a copy of a calendar complete with pictures which can be stuck on. This is a great way to see what is happening and on which day during the month of December. This can include events like putting your decorations up or having visitors to your home. Your child could remove the pictures once that event has happened.
• Try to keep your routine as similar as possible. This might include trying to keep to the same mealtimes and the same timings/routine when getting ready in the morning.
• If you put up decorations in your home, it can help to do this gradually. For example, placing the bare tree where it will go, then adding the lights a couple of days later, finally adding decorations a few more days after that.
• Some families have found it helpful to have a ‘Christmas free’ room or to only have decorations in one area of the house. This way family members can choose to go to a calm space if they would like some time away from Christmas and busy decorations. If a child is really struggling with decorations and changes to the environment, then siblings could decorate their own bedrooms instead.
• If you are visiting family or going to a Christmas event, it can help to pack a backpack include some favourite things. Also decide on a safe place when you arrive and then they can escape to this place with their backpack if they become overstimulated. It can be helpful to arrive at events a little early too. This way children or adults aren’t entering a room which is already very busy and noisy. You could also share photos of the home or venue you are going to ahead of time. This would help prepare and introduce the idea visually.
• Visual aids, social stories, sensory toys and ear defenders could all be used to support children or young adults if they are going to an event like a school nativity or disco.
• You could use photos of previous Christmases and family members to talk about what will be happening. A social story may be helpful when explaining what will happen on the day. Please contact us if you would like us to create a social story for you to use.
• Unwrapping presents can be overwhelming and cause anxiety. You could choose presents together or look at them prior to the day and wrap them up after, or you could try wrapping presents in tissue paper, see through paper or leaving them unwrapped, so it is not so much of a surprise.
On the day:
• Sometimes the number of presents can also be overwhelming as is the expectation to open one present after another. You could ask family members to contribute to one/a few presents so there aren’t as many, or open presents gradually over a few days.
• Consider using a visual timetable to show the plan of the day. You could include some opportunities for calm time/downtime during the day. (Please contact us at the society if you would like us to create a visual timetable for your Christmas day).
• Your child may respond well to having a job or a role on the day. For example, giving out presents or collecting packaging.
• For Christmas dinner, it may be that your child has a different meal to everyone else, one which you know is a favourite. You may like to give the option of eating before or after everyone else, particularly if there are more people eating together than usual.
• Continue to offer a calm space or a Christmas free area where your child can go (or be guided to) for some space during the day if things become a bit too much. They may like some time out to listen to music or watch a favourite programme/film.
After Christmas
• Try to take decorations down gradually.
• Continue to use a calendar or visual timetable to show when decorations will come down and school will begin.
• There can be a lull after Christmas with few activities or groups running. It can be helpful to have some preplanned activities, which you know your family member tends to enjoy.
• Jot down what has worked well over the festive season and also anything which didn’t work so well. This way you can consider these points when preparing next Christmas.
All of us at the Fragile X Society wish you a very happy Christmas!
Please contact me for further information and resources – alison@fragilex.org.uk
Other useful articles about preparing for Christmas:
References: