When a family has a child with a disability, parents often feel more like carers first and their mental health is put under immense pressure. Rose Road’s work is so important because not only do we care for the disabled young person, but our support helps improve life for the whole family.
Please consider donating to our Big Give Christmas Challenge, where your donation will be matched and doubled by sponsors to make your gift go twice as far to help families in need.
Families like Luke's. His dad Ian explains:
“Life became very difficult after Luke was born in December 2017. We didn’t have a diagnosis, we just knew he wasn’t developing. To be honest, we felt like carers instead of parents. We were simply meeting his needs, rather than doing anything fun or special with him.
My wife Anne was also struggling with her mental health. Luke’s older brother James has mild autism which brings with it extra considerations, and then lockdown happened.
It all got a bit too much.
Social Services initially put us in touch with Rose Road, and they arranged for us to receive 9 hours of support for them to look after Luke for two days a week; he attends nursery for the other three days when Anne goes to work."
Anne adds: “I remember the first phone call, when I was asked ‘what do you need?’.
I didn’t know how to answer, but I was pleasantly shocked. I was expecting barriers and waiting lists, but instead Rose Road were there for us right away. It’s now so good to know he’s being looked after and we can have a rest”.
Ian continues: “We have since received a diagnosis of a peroxisomal disorder, an incredibly rare genetic change that affects Luke’s body’s ability to metabolise some chemicals needed for brain and cell development. It means he has a global developmental delay, is non-verbal and non-mobile with some vision and hearing issues, and he is PEG-fed.
But he knows how to giggle!
He loves fast movement, bright lights and high-pitched sounds like whistling. We like to run around the house and tickle him to make him giggle, and his brother James never fails to make him laugh. They have a strong connection. When James laughs, Luke laughs.
He will soon start attending the neighbouring Rosewood School three days a week when he turns 4, and will continue to receive the respite support at Rose Road on the other two days, with the option of overnight respite care in the future. This, alongside practical changes we’ve made like recently moving house to one with an integrated garage that will become a downstairs bedroom and wet room for Luke, will all contribute to making life so much easier.
Importantly, Rose Road’s support has given Anne time to herself to do what she likes to do. And it gives us both adult time – we can sleep, relax, get things done.
We don’t look too far ahead, but Rose Road’s support has taken the pressure off and we don’t have to worry so much about the future. We know he’ll be happy and get a lot out of it.
Although we still have a carer role, it has made our days with Luke more enjoyable”.
Anne concludes: “We are very grateful, the people who look after him are lovely, and we don’t know where we’d be without them. Rose Road’s support saved my sanity”.
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.