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There are many benefits that can be gained from being a sibling to someone with additional needs (see my article with Friendili on my top 10 positives of having a sibling with additional needs). However, siblings' needs can often be neglected, both anecdotally and in research, and consequently they can be at risk of adverse psychological outcomes. I say this from my academic and professional experiences as an Educational Psychologist (e.g. through my siblings research and sibling talks and workshops), but also my personal experiences growing up with my sister Chrissy, who has complex additional needs (e.g. diagnoses of autism, a rare chromosome abnormality, ‘moderate to severe’ learning disability, epilepsy, sensory processing differences, and behaviours that challenge). Nevertheless, with the right support, it is important to note that siblings can thrive as a result of their sibling experiences.
Parents/carers will only be too aware that there is no magic wand or one-size-fits all approach to supporting children and young people (unfortunately!). Due to the multiple physical and emotional demands having a child with complex needs often presents, you may not have yet had the time or headspace to reflect on how best to support your child sibling(s) as much as you’d like to (who can blame you in ‘normal’ times, let alone under a pandemic!), or you may just be feeling rather ‘stuck’ in this area, or you may even just need some reassurance of the many things you are likely already doing incredibly well under difficult circumstances (or all of the above!). Although I unfortunately do not hold that 'magic wand', I hope to share some inspiration. However, please note that this is by no means an exhaustive list, nor a tick-list of things that you ‘should’ be doing - you are the experts in your own families and any support will need to be tailored to the sibling’s specific strengths and needs.
But with that in mind, here are my top 10 tips for supporting siblings:
1. Signposting
If you only take one thing away, it’s Sibs - a UK charity specifically focused on sharing information and support for siblings of children with disabilities and long-term health conditions. Their Young Sibs service provides a moderated online forum where siblings can connect with other siblings, ask questions, and seek social support. (Update: Super Siblings are a West Sussex-specific charity focused on supporting siblings of children with additional needs and their families).
An idea: You could spend some time navigating these websites with the sibling(s) or, alternatively, you could leave the website link somewhere for the sibling to look at on their own, when they feel ready.
2. Time and attention
Siblings often tell me that they feel they receive less time and attention than their brother or sister with additional needs. It felt this way for me too as a child, but on reflection, I understand this was just a consequence of our difference in needs, rather than reflecting a difference in love. Sometimes siblings just need this reassurance and some time allocated just for them. I really treasure memories of one-to-one time with my family.
An idea: How about having a consistent shared daily or weekly activity focused on the sibling’s strengths and interests? I appreciate this can seem difficult to prioritise when your lives are so busy, but even just a short period of 5-10 minutes of attunement and connection can be so powerful and mean a lot for siblings.
3. Communication
Siblings sometimes tell me that they do not feel they can talk honestly with their family about their feelings, or don't always feel listened to. My family were (understandably) often preoccupied with Chrissy's greater needs, so I found opening up to them difficult, partly for fear of creating any additional stress. But siblings often share some complex feelings with me that are difficult to process and manage alone, such as anger, resentment, and jealousy, which in turn can lead to guilt and shame.
An idea: 'Communication is key' as they say. Allowing opportunities for active listening, such as labelling and validating feelings, conveying empathy, and normalising these tricky feelings. For young people who struggle to open up, indirect approaches to conversation may be needed e.g. when engaged in another activity (e.g. arts or crafts, or bowling), or through a worry box.
4. Hobbies and interests
Some siblings share that they find it difficult to have breaks from family life to pursue their own interests and hobbies, particularly young carers. Similarly, my family often needed to be there for Chrissy, so were unable to drive me to places. There was also always part of me that felt guilty for going off and enjoying my own life, while they were all stuck at home. Nevertheless, these distractions provide well-needed stress relief, and opportunities for social support and confidence-building, which help promote wellbeing.
An idea: Sometimes siblings just need to be given permission and encouragement to explore and pursue their own interests. Try to ensure caregiving responsibilities are minimised for siblings where possible – as research highlights this can be a risk factor for sibings.
5. Education
In my sibling workshops, some children understandably find it difficult to explain their brother or sister’s diagnosis. I also found it difficult to explain Chrissy's condition(s) to others.
An idea: Provide opportunities to share age-appropriate information to help the sibling learn more about their brother or sister's needs and to ask questions. This will hopefully aid their own understanding, but also empower them to share this knowledge with friends and/or teachers (knowledge is power as they say), as well as increase confidence to manage any reactions from the public (unfortunately something I had to deal with).
6. School: Make them aware.
Some siblings share how difficult it can be to get enough sleep, to concentrate on school work, do homework at home, have friends round, or even turn up to school on time, due to having a family member with additional needs. I particularly struggled with my sleep as a child, and I was sometimes not allowed or too embarrassed to bring school friend’s home. I didn’t tell my friends much about Chrissy, let alone my teachers! I guess I didn't know how.
An idea: With the sibling’s agreement/involvement (as with all of these ideas), it can help to make their school aware so allowances can be made where necessary.
7. Support group
In my sibling workshops, siblings have shared feedback that they have valued sharing similar experiences (both positives and challenges), which has helped them not feel so alone, and promote their sense of belonging. As a child, although my friends could listen, I felt they could never truly understand, so I did feel quite isolated. However, the Sibs charity estimate that at least two children from every classroom have a sibling with additional needs, but perhaps often don’t realise. Armed with this information, an amazing child from one of my sibling workshops went on to set up a sibling group in his own school.
An idea: I would recommend googling sibling support groups in your local area, (update: such as Super Siblings) or speaking to the sibling’s school to see if they can set one up.
8. The future
Some siblings share their worries about what the future will bring for their brother or sister, and what their involvement will be in their care. I know this is something I worried about as a child (and still do!).
An idea: As siblings get older, these conversations may need to be addressed. Siblings may need reassurance of (and/or involvement in) future plans and of the support options that are available (e.g. my sister is now in 2 to 1 supported living in her own home, which has eased our fears about the future).
9. Therapeutic support
Some siblings may need a little extra support themselves, and it’s important for them to know that this is okay. Many schools have their own pastoral support systems, such as Emotional Literacy Support Assistants, Learning Mentors, school counsellors, or advicce can be sought from the school's link educational psychologist. The Sibs charity also deliver a one-to-one intervention for siblings in schools - Sibs Talk.
An idea: Speak to your sibling’s school about the support they offer. If you’re particularly concerned about the sibling’s wellbeing, please seek further support through your GP, mental health charities such as Young Minds, or through your local Child and Adolescent Mental Health Service (CAMHS).
10. The positives
The many benefits that can be gained from being a sibling can often be overlooked. At my sibling events, parents often speak with pride at the skills and qualities siblings have gained from their experiences (e.g. communication, patience, tolerance, independence, responsibility, compassion, kindness, understanding of diversity and difference – the list goes on!).
An idea: It goes without saying that any strengths, achievements, and support the sibling provides should be appreciated and celebrated. Don’t forget to also focus on the many positives and strengths of their brother or sister with additional needs too – again, something that can be easy to forget through the ‘deficit’ diagnostic processes.
Conclusion
I appreciate this is all easier said than done, and the reality of your job as a parent/carer to a child with additional needs can be overwhelming enough as it is, without taking into consideration the sibling’s support needs. But, as Annie Grant reported, siblings have needs too.
An idea: Of course your self-care should be an absolute priority first and foremost, but it may help to reflect on; what are you already doing well to support your child sibling? And what’s one thing you could do differently to further support them? Just asking the sibling what would help/how they would like to be supported will be powerful in itself. As Dr Karen Treisman says, “every interaction is an intervention”.
So that's my top 10 tips for sibling support. I'm sure you have many more ideas, so please do feel free to share in the comment box below, I'd love to hear from you.
If you know of anyone who would be interested in hosting one of my sibling events (talks and workshops for siblings and their families) e.g. a specialist school, charity or parent/carer support group, please see here for more information and/or get in contact.
If you’ve got this far, thank you so much for reading! Take care and all the best.
Alex
Gregory's Psychology Services
GPS: Helping you navigate your way