UK Charity Sibs Offers Resources for Siblings of Fragile X Children

Sibs, a U.K. charity that supports siblings of all ages who have a brother or sister with disability, has presented several resources for siblings of children with fragile X syndrome.

Last month, the charity hosted an online workshop for parents in the fragile X community; the theme was “Supporting siblings of children with Fragile X.” Following the webinar, Sibs shared a number of helpful resources for these families; they are available on the Fragile X Society website.

Specifically, Sibs made the workshop’s handouts available to parents. The topics discussed included siblings’ positive experiences such as developing tolerance and empathy for others, or having fun with their brother or sister. But they also addressed difficulties and challenges at school or with others, current research, and helpful information regarding siblings’ needs, which includes giving them regular attention, making them feel included, voicing their feelings, and addressing so-called “provoking behavior.”

The document also presents 10 tips for supporting siblings. Number one is to spend one-on-one time with siblings daily. Others are how to identify signs of concern, and where to get more help. To learn more, consult the handouts here.

Sibs also shared possible activities for siblings. The “attention jar activity,” for instance, is designed to give regular attention to young siblings and encourage them to ask for attention in a positive way rather than through bad behavior or whining. Details on this activity are available here.

Also, “Sibs Talk” is a one-to-one support intervention that has been piloted in primary schools across England. Its goal is to enhance siblings’ well-being and engagement with learning. It consists of an activity booklet in which each page is a short session meant to have the sibling work through with a member of school staff.

Sibs also has a new project, “Siblings in Schools,” that seeks to find out what is most helpful for siblings in schools and what helps them progress. The information leaflet is available here. Those interested in taking part in this project may e-mail the development officer at [email protected].

To support siblings of children with different conditions, the charity also made a booklist available for families. It can be viewed here.

Finally, a study by University College London’s Institute of Education aims to better understand the experiences and relationship between loneliness, sleep, daytime behaviors and living the support needs of siblings of a brother or sister with a chronic disease. It is intended for siblings ages 8 to 25 and living in an English-speaking country. To participate in the survey or know more about the study, go visit this website.

To learn more about the available resources at Sibs, ask questions or request  support, e-mail [email protected].