On talking to parents on the advice line one common issue is anxiety levels when transitioning from one activity to the next, e.g. going from home to school either in the car or on school transport. Children with Fragile X Syndrome can become overwhelmed with all the sensory information around them. Perhaps in the morning the TV is on, siblings chattering, they are having to get washed and dressed and are rushing to eat breakfast. It’s not always easy for us to stay calm when rushing around but for them, along with the anxiety of the day ahead, they can go in to meltdown. One little boy I worked with couldn’t cope with the smell of the cleaning agent mum used in the kitchen and this affected his behaviour on the way to school. The strength of the smell overpowered any other sensory messages to the brain.
It’s far better if you can pre-empt any difficulties and to be proactive rather than reactive; I know it’s easy for me to say this, when getting off to school in the morning is a major headache for all parents.
However, the suggestion is for you to ‘frontload’ when dealing with sensory processing difficulties. Front load was the buzz word a few years ago with professionals but in other words, have a sensory item ready such as a stress ball, tangle toy, chewelry (i.e. something to chew) or the trendy squishy toys that are very popular at the moment. By casually handing your child an item prior to the next transition, you are ‘feeding’ their nervous system and they can concentrate on this item rather than being anxious about what lies ahead i.e. going into the car. Families I have worked with in the past felt it better to have a specific transition item/toy rather than just whatever sensory item is nearby to help. I know of one child who had a calculator to use to tap in numbers – I just hope he doesn’t trip over the doorstep on the way to the car!
In the past I have suggested having a container with a range of sensory ‘tools’ in however, I think is important to consider the suggestion in our paper ‘Calming, Coping and Comforting’ regarding Fragile X emergency kits. The contents of the kits are tactile /fidget toys as well as visual items such as a dry-erase board to write on.
I do hope this has been of help and please do contact me directly on 01371 875100 or email caroline@fragilex.org.uk to discuss in more detail.
References
Calming, Coping and Comforting. Self-Regulation and Sensory Based Strategies to manage Hyperarousal
Precis of talk by Sarah Scharfenaker (MA.CCC-SLP) and Tracy Stackhouse (MA.OTR)