Life as the sibling of someone with Rett syndrome can be tough. A sibling might feel guilty about the things they’re able to do that their sister or brother can’t. They may feel resentful of all the time and attention their sibling gets. They may be bullied at school because their Rett sibling is ‘different’.

It’s not easy to speak out about these feelings or explain how their life is affected by Rett syndrome, particularly when parents seem so preoccupied with their sibling. But when emotions are bottled up it can often lead to disruptive, attention-seeking behaviour either at home or school. We give siblings the chance to talk about how they feel.

Pants and tops!

One of the fun activities our Family Support team facilitates is called ‘Pants and Tops’. Working with a group of siblings, we have cut-outs of pants and tops that they can write on to express how they’re feeling. We get them to write all the rubbish things about having a Rett sibling on the pants, and all the good things on the tops – then hang them on a washing line so everyone can read what others have written.

It really helps to get the siblings talking and release some of those bottled-up emotions. We can then talk to you and provide the relevant support – for example, in cases of bullying we can go into the school to do training with the staff and children.

We currently run sibling support sessions at some of our regional roadshows, so please keep an eye on our Events page.  And if you’d to talk to us about how to support your non-Rett child, please email support@rettuk.org