Opportunities for Independence: Barney's Story
Read mum Vikki's story about her son Barney, and how Rose Road gives Barney his independence and chance to be himself.
Vikki explains:
Barney is simply brilliant. Complex, but brilliant. He is autistic and has ADHD. He is also under a new investigation for a genetic disorder, alongside various diagnosis including a sleep disorder, hypermobility, PMLD and ARFID.
But what’s much more defining is his happy character! He’s a practical joker, he loves slapstick humour like Mr Bean and Wallace & Gromit, and from his early days he’s been obsessed with dinosaurs.
He's my first born, my day zero. I have a younger daughter and they have two older half sisters; who all see each other as one big family which means everything.
Barney is also quite insular and introverted, and without the right support he could easily go weeks without setting foot outside the front door.
Plus, being a tall, energetic almost 16-year old with complex care needs, I can't facilitate all the things he gets to go with Rose Road. There’s the logistics and cost of things as a single parent. I co-parent with his amazing dad who works full time and my support network is wonderful but small and they face their own challenges. Often, I will need a second adult with me to help Barney safely leave the house, especially if he's having a difficult day. Or if I’ve had a tricky night.
I simply can’t manage it all by myself.
Even with planning, we might get to an activity and it isn't inclusive or can’t support all his needs. It can make it feel impossible when there are all these hurdles. But this is where Rose Road makes all the difference.
Barney first joined Rose Road in 2018 aged 8 using the holiday play schemes, and starting overnight respite in 2019.
The experience of the tea visits for six weeks to introduce him to Rose Road and get him ready to stay was phenomenal.
It was totally Barney led which was so amazing.
The team answered all my questions and made me feel so very welcome.
While Barney can't live independently, he can briefly live independent of me, thanks to Rose Road.
He gets to go out and about to all sorts of places or just have quiet time. From a boat trip of an evening, to dinosaur crazy golf, plus lots of activities on site at Rose Road too. Barney knows his trusted adults at Rose Road, and they know and understand him. I feel secure in knowing he feels safe.
He can ask them to go to the local shop and they can safely facilitate this. They let him be him, but also encourage and enable him to enjoy new experiences, make his own choices about what to do, and make him feel valued.
I know his medical and physical needs are supported as a complex young adult. But it's all the other wonderful things they do with him that give him that life where he's so happy.
Without Rose Road, he would be isolated, and we would be even more isolated as a family.
He has a couple of lifelong friends that he spends time with at Rose Road, and I can spend time with my daughter. Barney and his sister are different people and want to do different things, so Rose Road helps support not just Barney's needs but my daughter's too.
Rose Road keeps me from going into crisis too. We've had family emergencies and Rose Road have just stepped in. The kindness and compassion shown resonates deeply with me.
Every challenge we've had, Rose Road have supported us and made life so much easier. As a parent, all I want is for him to be living his best life and with Rose Road, he is.
