Cally’s Story
Our journey with Home-Start began when our second son, Jack, was just a baby.
When he was two days old, he was diagnosed with a rare metabolic condition, which causes seizures and neurological issues. As the weeks passed, more diagnoses followed. He developed hydrocephalus as a baby, requiring a shunt, and later, secondary epilepsy was diagnosed. He also has developmental delay and learning disabilities, with challenges around communication and self-regulation.
We were the first to admit that we were struggling. It was a whole new world for us, and life felt incredibly overwhelming and very isolating.
Jack needs constant attention, medically and otherwise. He’s strong but doesn’t understand his own strength, and he can’t self-regulate, so everyday tasks feel hard. Sleep has also been a challenge, with nights when he is awake for hours. It all takes a toll.
We have family who help where they can, but we knew we needed more support, a regular extra pair of hands and someone who really understood what we were going through. But we didn’t think this was possible.
Over time, our health visitor recognised the challenges we were facing and told us about Home-Start Butser. Within weeks, we were matched with Jane, our Home-Start volunteer, when Jack was two and a half years old. We were delighted to be offered this support.
Jane changed everything for us. She comes each week and gives us that practical support, but it’s so much more than that. She understands what we’re going through because she’s been through similar experiences herself. That makes such a difference. She’s like part therapist for us, but also someone who gives us space, advice and encouragement.
Thanks to Jane, I’ve been able to spend one-to-one time with our older son, Harry, particularly in the school holidays, which he really needs. I am also able to have a moment to myself, which is rare and invaluable when you are a full-time parent and carer.
One of the biggest impacts Jane has had is on Jack’s communication and development, which has been key to getting him ready for school. Communication was what he struggled with most. Jane introduced simple, structured play and used consistent language to help him understand and communicate with us. She made flashcards tailored to the things he likes and used them to help him express himself. That got the ball rolling at home, and nursery continued with this too.
Because of that support, we feel more confident about Jack starting school. He’s at nursery, he absolutely loves it, and his speech is coming along. He has an EHCP and will be starting mainstream school, that’s something we feel able to try because of the progress he’s made.
Jane has also helped us come out of that place of isolation. There was a time when we stayed at home because we were worried about Jack getting unwell, but she encouraged us to get out more and do things with the boys. She’s helped me feel less alone and more able to cope with everything.
Life is still challenging. Jack still has complex needs; they haven’t gone away. But things feel more manageable now. We’re more confident, and we can see a way forward, thanks to Jane and Home-Start.
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