Giving the gift of time to siblings of SEN children

Clare Rochford discusses how the need to support siblings has increased due to the COVID-19 pandemic, and her own experiences with her sister with special needs.

The pandemic has changed our service provisions in many ways. While remote sessions through the magic of Zoom, Skype, FaceTime, Jitsi and countless other pieces of software have helped to fill the void, it has also been essential to maintain regular 1:1 contact with families.

Over the summer, we worked to deliver play sessions within childcare bubbles to minimise any and all risk of transmission for families playing together, and to ensure staff can continue to provide care for those who need it most. We even managed to pull together a Santa’s grotto to provide some sense of normality during the festive season for families of SEN children. However, one area where I think we can all make improvements is supporting siblings of children with SEN. This has become even more apparent during the pandemic.

Working with families over the past three years, I have learnt that there is a big gap in provision for siblings. I believe that a lot of this comes down to funding and people having the skills to deliver this kind of project. I felt as a team we could definitely meet this need, we know a lot of the siblings of the children we support really well, and we have watched them grow and have given them time and freedom to be themselves. But could we go one step further and give them a project solely targeted at supporting them?

Being an SEN sibling

I myself am a sibling. My big (but little) sister has a rare genetic condition called Smith-Magenis Syndrome, a developmental condition affecting many parts of the body. It was tough growing up, I took on the big sister role, I felt like my mum and dad didn’t have time for me, and a lot of their time was taken up caring for her. Because of this, I had a really warped view of the world and my family life. It wasn’t until I was a teenager that a social worker spent time with me exploring my feelings and made me realise that I wasn’t alone.

Later in life, I helped start a sibling group. I found it therapeutic to be able to share my lived experience, and it was then that I was able to reflect on how my poor mother really did have it tough and that she had actually done a pretty good job at making sure life was fair for both my sister and I.

Creating a support network

It is important to provide the opportunity and enable young people to realise they are not alone, bringing them together to create a group that will hopefully give them a support network which will last far longer than the few years they wish to attend, because in my experience being a sibling never ends. Most importantly, we can give them our time – a lot of these young people will not experience many adults in their life that can give them time, time to be a child, time to learn important skills such as baking, time to craft, make messes, and have fun. Time to be heard, to listen, and to care. My hope is we can be that person.

■ Siblings of children with SEND can feel like they aren’t being heard.Siblings of children with SEN can feel like they aren't being heard

Whilst the group is currently paused due to the current restrictions, we are able to continue our research the need for the group, the focus our group will take, the difference our group can make, and to enable staff training so they can make the most of the two hours a week they get to spend with the young people. This means that as soon as the group can restart, we are ready to support and have fun with the young people. Life is tough enough for siblings, let alone without the impact of Covid-19 on their lives, the pressure on family life is so much greater.

For all I say about how being a sibling is tough, now that I am an adult I can see that it can also be the most wonderful thing. I get to live my life through the eyes of a child every day; Christmas is still magical, birthdays are still exciting, and the love my sister and I share is special. I am so grateful for having her in my life, because of her I have learnt to be empathetic and I am 100% better at my job, because I can relate to these families and their struggles and I can tell them: ‘together we will be OK’. Our hope is that when the current phase of lockdown eases, we can reinstate the work we have started, and we will be sharing what we learn along the way in order to help siblings everywhere.

■ Clare and her sister

About the author

Clare Rochford is the Children’s Team Manager at Diverse Abilities, Dorset’s disability charity.

Web: diverseabilities.org.uk Facebook: @diverseabilitiesplus Instagram: @diverseabilities