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Helen's story

Helen Spalding lives with her daughter Maja, 22, and husband Phil in Salisbury, England.

Helen and MajaMy daughter Maja was born with the rare genetic disorder Kleefstra Syndrome. If you’ve not heard of it, it’s a rare genetic disorder characterised by intellectual disability and means Maja requires specialist education and round the clock support.

I didn’t think twice about giving up work to care full-time for Maja when she was born as her needs are complex. Looking back I realise what a huge decision it has turned out to be – I can’t return to full-time work whilst Maja lives at home. Caring can be demanding, it certainly requires all my attention! Maja needs constant supervision and support with most things. Being Maja’s carer, the hardest thing I’ve found over the years is getting a proper break; some time for myself. It’s been at least eighteen months since we had overnight respite – when Maja stays at a residence to give me a break – and my husband Phil and I got the house to ourselves. I’ve learned to take 10 minutes here and there where I can to put my feet up.

It has been especially intense for both Maja and I during the COVID-19 pandemic. Maja found it particularly tough at the beginning not being able to go to her college or participate in her usual activities – such as art club and youth theatre - and her mental health declined rapidly. Seeing her unhappy impacted on me too.

Maja has not been back to college since she broke up for Christmas so we're home schooling, with three Zoom sessions most days as well as homework and activity sheets. We’ve gotten familiar with Zoom and other digital and online resources which have helped us to keep in touch with the people we know. We’re part of our church’s online group and although she wasn’t sure at first, Maja is enjoying it more and more!

It would have been very easy for us both to have become cut off during the pandemic but maintaining contact with friends and family online has been a great source of support. As a carer, I find being connected with others is so important for my own health and wellbeing. I love my daughter to bits and conversation with her can be really fun; other times it is challenging and it can be a relief to connect with other adults. Being connected allows me to be ‘Helen’ and takes me out of my everyday caring routine. I definitely value my connections with other people a lot more since the pandemic started.

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