14 May 2019 | North East England
Charity helps families and children with Down syndrome reach their potential
The charity Downright Special was started in 2007 by a group of parents of children with Down syndrome in a bid to help each other charter unknown territory.
It quickly developed into an organised group giving emotional, practical and educational support to families across Hull and East Riding.
The Hyde family are just one who have found both support and friendship after being connected with the charity. Downright Special have been supporting them ever since their son Arthur was born.
The happy and creative eight-year-old brings laughter and joy to the family - mum and dad Sarah and Chris, and siblings Edward, 7, and Felicity, 3.
“Arthur is a bundle of joy,” says mum Sarah, 44. “He is happiest playing with his dress up box and is always trying to sneak something like a waistcoat or hat into school. He is clever at that!”
But she says finding out her first child had Down syndrome was a real shock for her and Chris, 45.
“We were unprepared, as it had not come up on the ultrasound. We didn’t know anything about Down syndrome so it was a double whammy - leaping into the unknown as first time parents.”
The charity stepped in to help them with all their questions and needs and put them in touch with other families.
Gillian Bowlas, charity manager says, “We work with over a hundred families and go into 45 schools and nurseries. Our aim to help children achieve their full potential and promote successful inclusion in all aspects of life.
“It is all about having high expectations of what people with Down syndrome can achieve when the right support is in place.”
Downright Special - who are totally reliant on donations and fundraising - visits new mums and dads, as well as expectant parents who have had a diagnosis of Down syndrome during pregnancy. They hold sensory and signing group sessions for babies, specialist play and education sessions for families with pre-schoolers and organise social events such as Easter egg hunts.
And they work closely with local health and education services to improve the care pathway and educational outcomes for children.
“Two weeks after Arthur was born they linked us up with another family who had a three year old daughter with Down syndrome,” explains Sarah. “She was so bubbly and chatty, it blew us away. I can’t tell you how massively reassuring it was.
“We realised that if this was the future, we were totally fine with that. Our biggest worry really was if Arthur had any of the medical conditions that are associated with the Down syndrome, but he was perfectly healthy.”
For the Hydes the support from Downright Special made all the difference. “I remember going to a coffee morning and meeting other families with children of ages with Down syndrome. Everyone was so welcoming and it was exactly what I needed.
“They have also been amazing in terms of Arthur’s education. He goes for part of the week to a mainstream school and the rest of the week to a specialist setting. When Arthur first started at the mainstream school they had limited experience and knowledge, so the charity went in to speak and train with the teachers. They sent in a resource pack to help the school support Arthur and when we have a review meeting at the school they come along. It is a real partnership.”
Sarah has been so motivated by the support her family has received she has now joined Downright Special as their new charity co-ordinator, helping to support new families.
She says: “It’s going to come full circle. That family we first met through the charity have become very dear friends, they are even godparents to our daughter. We would never have met them or any of the wonderful people we now know had it not been for Downright Special. Their support has been incredible. Now I want to help others.”