“WITH the right support, a child with Down’ syndrome can achieve everything,” says Katharina Barker, from 21 Plus, a support group for families with children who have the condition in Monmouthshire.
Ahead of Down’s syndrome awareness week, which takes place next week, Mrs Barker and some other families shared their experience about having a child with Down’s syndrome.
“I found out Bryan had Down’s syndrome when he was born,” explains mum-of-two Rhiannon Stundon.
“I was not treated very well at the hospital and I was told in a very negative way.
“When I first had him, I thought it would be awful. It was a very bad couple of days, but it was quickly turned around.”
The 41-year-old says Bryan, who is now aged five, is “fantastic”. He attends a mainstream Welsh medium school and follows the same curriculum as everyone else.
He is trilingual, if you count sign language, explains the mum.
“He has started to read and his speech is very good,” said Mrs Stundon, from Abergavenny.
“I could not be happier. I do not think of him as having Down’s syndrome, I don’t even notice it.
“Bryan is a very happy child, but it is not because he has Down’s syndrome. Each child with Down’s syndrome has a different personality – just like any other child.
“I believe things are changing, and the fact children with Down’s syndrome are in mainstream schools is normalising it. The more they are in the mainstream, the more they are in the community, the better. It is the same with any disability.”
The family first joined 21 Plus when Bryan was five-months-old and, since then, he has been part of their speech and language group – Talk Time.
The support group is run by three mothers; Mrs Barker, Victoria Hughes and Nicky Williams, and has been running for about six years. It aims to encourage speech, language and communication development in children with the condition.
They learn a type of sign language called Makaton. The support group has been shortlisted for this year’s Welsh Government’s St David Awards which recognise the outstanding achievements of different people from both in, and outside of Wales.
Mrs Barker said: “Children with Down’s syndrome have their learning delayed, it takes a bit longer.
“Even if they have the urge to communicate, they may not be able to speak yet, so we use sign language to help them communicate.
“Then, they can use sign language together with language. Eventually, they drop the sign language.”
Mrs Barker explains that, in the club, the children also learn early reading so that by the time they go to school they can read some words, giving them a head start.
“This is the only group we run regularly, but we also have trips and workshops for parents on the different aspects about life with a child with Down’s syndrome,” she says.
“My son is in the group with his teaching assistant,” says Mrs Stundon.
“Before he could speak, Bryan was using sign language. You can imagine, without this, the frustration it would cause not being able to communicate and the behaviour issues it could lead to.
“Speech and language therapy has made a big difference. A lot of negative behaviour is down to the inability to communicate, it causes frustration.
“From the beginning, Bryan has been able to say how he feels.
“It is exactly like anything any other child, it is just elongated. It takes them longer so, when it happens, it is fantastic.
“The work this group does is invaluable, it has given us a much more positive experience.”
Mrs Barker, 49, who has a daughter with Down’s syndrome, said the children typically attend Talk Time since they are babies.
She says: “When the children grow up, their teaching assistants also come to the group so that they can also use some of the methods at the school.
“In the case of babies, it is more about parental learning. They progress through the groups over the years.
“21 Plus is about supporting families with children who have Down’s syndrome and supporting schools and any professionals who also work with them.
“We were set up about 10 years ago as a small group.
“For the parents, it forms a support network. They meet other families in the same situation.
“They can ask questions, meeting families in the same boat is really helpful.
“The families and children form friendships, which is also a very important aspect.
“With the right support, a child with Down’s syndrome can achieve everything and the main aim of our group is to help the children achieve their potential.
“My 13-year-old daughter is planning to do her GCSEs, including one in German.”
21 Plus also runs a school support service, as part of which they go to schools to give them support on how to work with children with Down’s syndrome.
Most of the children in the group study in mainstream schools.
The group is also involved in the “Tell It Right” campaign, a national campaign in which families with children with Down’s syndrome go to hospitals and parents speak about their experience of when they were given the news.
Mrs Barker said, for the majority of parents, it was a negative experience. She said it is very important to give people up-to-date, correct information.
She said: “Once people are fully informed, they can make a decision. Often, you are given out-of-date information, making it look as if having a child with Down’s syndrome is one of the worst things that can happen.
“It is not destroying families, it is not terrible for the siblings.”
She added: “It can be a good experience when you support each other, the families here are very happy ones.”
Claire Johnstone is an example of a happy mum who attends the group with her three-year-old son Hari, who has Down’s syndrome.
The 39-year-old also didn’t find out Hari had the condition until he was born.
“When he was six-weeks-old, he had an operation for cataracts. He also had an operation for his two holes in his heart,” says Mrs Johnstone, from Cwmbran.
“From two-months-old, he has been tube fed and, in March last year, he had an operation to get the button in.”
A ‘button’ is a tube inserted through a small incision in the abdomen into the stomach used for long-term enteral nutrition – that is, nutrition via a tube.
She said: “It is much better now.
“He will probably have the button for the rest of his life. In winter, he gets very poorly because his immunity is not very good.
“He can walk with my support and I am trying to encourage him to use the walking frame.”
She added: “Hari had so many health problems I just wanted him to be well.”
Mrs Johnstone says 21 Plus is amazing and that it is one of the first groups she was in touch with after Hari was born.
She said Hari loves his speech and language groups.
“Without this group, Hari would not have progressed this way,” she said.
“When Hari was diagnosed, I was quite lonely. This group makes a huge difference.”