Updated: Nov 20, 2020
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 disorder, ‘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.
Those of you 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, some of you may not have yet had the time or headspace to reflect on how best to support their sibling(s) as much as you’d like to (who can blame you in ‘normal’ times, let alone under the present 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 doing incredibly well under difficult circumstances (or all of the above!). If you can relate to this, although I unfortunately do not hold that magic wand, I hope to offer 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: The Sibs charity.
If you only take one thing away, it’s Sibs - the only UK charity specifically focused on sharing information and support for siblings of children with disabilities and long-term health conditions. For example, their Young Sibs service provides a moderated online forum where siblings can connect with other siblings, ask questions, and seek social support.
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 when they feel ready.
2. Time and attention: The most valuable gifts to receive.
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 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. 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. “Are you living in a dream world?” I hear some of you say..! I do appreciate this can seem difficult to prioritise when stuck on that hamster wheel, but even only a short period of 5-10 minutes of attunement an evening can be so powerful and mean a lot for siblings.
3. Communication: And hearing what isn’t said.
Siblings sometimes tell me that they don’t feel they can be honest in talking to their family about how they feel, or don't always feel listened to. I felt the same, what with my family understandably often preoccupied with Chrissy's greater needs. But I also found opening up to them difficult, likely not wanting to be a ‘burden’ and trying to protect them from 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 always key and allowing opportunities for active listening, such as labelling and validating their feelings, and conveying empathy in order to normalise these tricky feelings. For young people who struggle to open up, indirectly introducing this conversation when engaged in another activity (e.g. arts or crafts, or bowling) may help, or through a worry box.
4. Breaks and hobbies: What makes them happy?
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, opportunities for my family to drive me to see friends were sometimes limited, due to needing to be there for Chrissy, but they did help encourage my many hobbies, including gymnastics – my ‘escapism’. But then there was 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, to help promote wellbeing.
An idea: Sometimes siblings just need to be given permission and encouragement to explore and pursue their own interests and aspirations. Try to ensure caregiving responsibilities are minimised for siblings where possible – as research highlights this can be a key risk factor for poorer outcomes.
5. Education: Knowledge is power.
In my sibling workshops, some children understandably find it difficult to explain their brother or sister’s diagnosis e.g. autism. I also found it difficult to explain Chrissy's condition(s) to others.
An idea: Opportunities for age-appropriate education to help the sibling learn more about their brother or sister's needs and to ask questions will hopefully aid their own understanding, but also empower them to share this knowledge with friends and/or teachers, as well as giving them the 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 the impact of having a brother or sister with additional needs. From my experience, I particularly struggled with my sleep, and I was often not allowed or too embarrassed to bring school friend’s home. However, I often didn’t tell my friends much about Chrissy, let alone my teachers!
An idea: With the sibling’s agreement/involvement (as with all of these ideas of course!), it can help to make their school aware so allowances can be made where necessary.
7. Support group: Promoting a sense of belonging.
Feedback from my sibling workshops include siblings being able to share similar experiences (both positives and challenges) and not feel so alone. For me, 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, or speaking to the sibling’s school to set one up. I am hoping to set up a regular sibling workshop in the West Sussex area if anyone would be interested!
8. The future: Don’t let fear decide your future.
Some siblings share their worries about what the future will bring for their brother or sister, and what their involvement will be in looking after them. 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 just 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: Sometimes the bravest thing you can say is ‘help’.
Some siblings may just 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, or school counsellors. The schools link educational psychologist may also be able to offer further advice in this area. The Sibs charity are currently delivering 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 referral to your Child and Adolescent Mental Health Service (CAMHS).
10. The positives: When it rains look for rainbows, when it’s dark look for stars.
The many benefits that can be gained from being a sibling can often be neglected – both anecdotally and in research. In my talks, parents often speak with pride at all 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!). Some siblings may just not realise this yet (I know I didn’t as a child).
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 with the current ‘deficit’ diagnostic processes.
So, 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 considering the sibling’s support needs. But, as Annie Grant reported, siblings have needs too.
An idea: It might be helpful to reflect on; What are you already doing well to support the sibling (and of course for making your own self-care and compassion a priority too)? And what’s one thing you could do differently to further support the sibling? Just introducing this conversation to ask what would help/how they would like to be supported will be a powerful intervention in itself. As Dr Karen Treisman says, “every interaction is an intervention”.
Please feel free to share your responses to these questions in the comment box below, including any additional sibling support ideas that you have found helpful, or anything else that has resonated with you reading this.
And if you know 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 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, all the best, and I hope to hear from you!
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