Welcome to the first instalment in our new ‘special edition’ series of blog articles focusing on siblings.
This article not only follows up from our Sibling event in January, but it also gives you new information to help guide you through the challenges of supporting the siblings of those affected by Fragile X in your family. Here, Clare Kassa (CEO of Sibs) offers some tips for parents in supporting sibling children, and where to find additional information.
What is it like being a sibling?
Being a sibling of a brother or sister with Fragile X brings experiences which can be both good and challenging. Siblings often learn skills and develop abilities from supporting their brother or sister. This means they often show great patience and can be creative and resourceful. However, sometimes siblings might struggle a little too. Siblings at times may feel isolated, worried or lonely.
What can I do as a parent to support my sibling child?
Parents often feel worried and guilty about the impact having a disabled brother or sister might have on their sibling child. It can feel like a struggle to meet the different needs of all of the children in the family. However, there are some simple things which can help.
1. Spend time each day with siblings one to one
2. Talk about disability from an early age
3. Acknowledge negative feelings as well as the positive ones
4. Teach siblings fun activities they can do with their brother or sister
5. Give siblings choice about spending time with their brother or sister
6. Limit the type and amount of care and support that siblings do
7. Take action on issues that affect your siblings’ wellbeing and education
8. Talk to siblings in the teenage years about plans for the future
9. Give siblings permission and encouragement to enjoy and live their own lives
10. Celebrate siblings’ achievements
Where can I find information for my sibling child?
In our 20 years of supporting siblings, we have learned how important it is for children and young people to have access to good quality information. YoungSibs is our online information service for siblings aged 7-17. The website provides a range of resources including age-appropriate information on disabilities and health conditions including Fragile X, autism, ADHD and learning disabilities. There is lots of information about how to cope with sibling life at school, maintaining good mental health and tips about what siblings can do if they are worried about the future.
Importantly, there is also information about finding ways to develop positive relationships with their brothers and sisters. Sibs also writes monthly blogs for children on relevant topics such as celebrating family occasions, changing schools or learning about new diagnoses. There is also the opportunity for siblings to write to a sibling advisor with any specific worries or problems, receiving a personalised response from the Sibs Team.
What other support is available?
Having opportunities for siblings to meet other siblings like them is a valuable source of support and comfort for siblings. Some siblings attend local sibling support groups, some children receive support from young carer services and others have the opportunity to meet other siblings through local and national events for families of disabled children. It is crucial for siblings to know they are not alone! Sibs has also developed Sibs Talk, an intervention for primary school aged children. Sibs also works to train professionals wishing to set up sibling support groups.
Sibs is the UK charity supporting brothers and sisters of disabled children and adults and provides support to siblings across the lifespan.
Survey for siblings
Sibs have set up a new survey for parents of young siblings on some of the challenges they are facing in this latest lockdown. You can access the survey here.
Clare Kassa, CEO, Sibs