When a family has a child with a disability, it’s important to remember how this can impact the mental health of siblings. Rose Road’s work is so important because not only do we care for the disabled young person, but our support often helps improve life for other members of the family.
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Families like Advay's. His mum Anchal explains:
“For the first few years of Advay’s life, things were difficult. We knew he wasn’t meeting his milestones but we didn’t yet have a diagnosis. With no family nearby and very little support from other agencies, we carried on because it was all we knew. When he was 3 years old we had his little brother Advik, and in order to cope and ensure that we all had a quality of life, I had to give up work managing a recruitment consultancy.
It was hard, but family came first.
It was when Advay started school that I reached out for more support and was given Rose Road’s details. The outreach team got in touch to talk through the help I would like. They were very responsive and really worked with us to find out what would help most.
Advay has since been diagnosed with a rare genetic mutation that causes epilepsy, global developmental delay and complex additional learning needs. He will bang his head when he is bored or frustrated so he can hurt himself easily. As he grew up, taking care of him ourselves became almost impossible.
What’s more, his brother was growing up in his shadow and we were very concerned that he would feel like he took second place – which is something we didn’t want at all.
At first, Rose Road gave us outreach support at the weekend, taking Advay for days out. We then started to receive their help at home in the mornings to help get him dressed, fed and off to school and to play with him in the evenings, which meant we could spend more time with Advik.
Advay struggles to sleep through the night and he wakes often, which means we don’t get a good night’s sleep either. So, we also get support for respite care one night a week. But what is extra special about Rose Road is that they are flexible, letting us save this up to use all at once when we want to go on holiday with Advik. Sadly, this just wouldn’t be possible with Advay; he wouldn’t tolerate a long journey or big change of scene.
Rose Road’s individual and flexible approach to Advay’s care has made such a huge difference in our lives and enabled us to focus on his younger brother.
They work their schedules around Advik’s extra curricular activities so that he can attend his sports and music clubs, which allows him to be himself, let off steam and have a sense of a ‘normal’ childhood. It was so important to us that he does not feel second place or neglected and Rose Road have made sure that didn’t happen.
We can’t fault Rose Road and we simply don’t know where we would be without them. Michaela our support worker is a lifeline, she is absolutely wonderful.
Although Advay is non-verbal, we know he is always happy when he comes back from Rose Road. Clapping is a sign he is happy as he’s always clapping away. We are so reassured to know he is happy and well looked after.
As a family we feel much happier, we can manage our situation and we feel much better about the future of both our children".
We are constantly working to be there for as many disabled children and young people and their families as we can, providing scheduled and emergency overnight respite care, community 1:1 outreach and telephone help and advice to families across Southampton and the surrounding region.