Bright coloured picnic blankets adorn the grass, frisbees are thrown back and forth, while infectious laughter echoes around Forge Dam Park, as families from the Sheffield Down’s Syndrome Support Group gather to celebrate their children’s achievements. 

It’s evident there is much to embrace, but the parents who came together as part of Down Syndrome Awareness Day believe more needs to be done for their children to feel part of everyday life, so they can enjoy the simple pleasures their peers take for granted. 

Bess, 39, a stay-at-home mum, looks on at her nine-year-old son, Amos, with pride but feels for years she has battled against medics telling her all the things her son could not achieve.

Amos goes to a mainstream school and attends Beavers. He is also exceptionally good at bowling, and recently came second place in a competition. 

“Amos is empathetic, but his communication, and the way he makes someone smile are not reported in the education system,” says Bess, from Sheffield.

“It would be nice for us as a family if the educational achievements are not only academic but also holistic, and include all those bits that you can’t achieve through tests.”

Although Amos has found groups he can attend, this has been a struggle for his parents, who have faced barriers in helping their son feel included. 

“The main challenges now are finding places where Amos can belong, where people aren’t afraid of him having Down’s syndrome,” says Bess. “He has delayed development so is not your typical nine-year-old. We had to fight hard to get Amos the support that he needed, I think the education system is a bit behind on supporting children like Amos.” 

Bess knows what Amos learns educationally on a weekly basis is below the national average for an average child of his age, but she believes that no matter what her son succeeds in should be celebrated and acknowledged. Bess feels strongly the education system and mainstream schools need more training to celebrate these milestones. 

Another mum, Tracy Tonks, who attended the get together explained one problem many expectant parents of children with Down’s Syndrome face, is the fact they are constantly told what their unborn babies won’t be able to accomplish.

When Tracy, 49, who is originally from Sheffield, was told her daughter, Esme, would have Down’s Syndrome she “grieved through the entire pregnancy” after medical professionals provided a long list of things that her child could not achieve. 

“Nobody actually said to me that I was just going to have a baby,” she says. “I am ashamed of how I grieved now,” she says. “The information that I was getting was all wrong. They kept telling me she wouldn’t be able to do anything, but she is living her best life now.”

Tracy, who now lives in Nottinghamshire, has found it a struggle to find the same amount of support that she received in South Yorkshire. Esme needs occupational therapy, however, she does not “tick enough boxes” to receive it in her current hometown, but was offered to her when she lived in Sheffield. Tracy believes the number of children with Down’s Syndrome needing support exceeds the amount of funding received by the health and education sectors.

“It feels like I have to beg to get help, which is scary,” she says. “Everything just seems to be a fight.”

Tracy explained, although Esme’s mainstream school has a lot of children with special needs, her daughter doesn’t get the extra help she needs with reading and writing. 

The mum says it’s the Sheffield Down’s Syndrome Support Group which has been a lifeline. She joined when she was pregnant, went to a picnic two months before her daughter was due, and has been a part of it ever since. 

“This support group saved me,” she says. “It has changed my entire perspective.”

Saurabh Sinha, 55, is a former neurosurgeon from Sheffield, and dad to Rory, 18,  who also has Down’s Syndrome. He believes it is important to train medical professionals on how to communicate to children with learning disabilities.

He said it is crucial to be positive when delivering the news of a Down’s Syndrome diagnosis to parents. He explained beginning a journey of parenthood with all the negative aspects can scare parents and these children are just as capable of achieving all the things that a perfectly healthy child can

“Often even before the child is born or diagnosed with Down’s parents are told horrific stories about what their child can and can’t do,”  Saurabh says. “Telling the parents about medical complications is important for their health, but you can never tell them what their child can and can’t achieve.”

Rory had cardiac surgery as a child but has gone on to achieve several gold medals in basketball, plays tennis, and trampolining.

Saurabh believes being a parent to a child with Down’s has made him a better doctor, and because Rory was sick when he was younger, he could communicate and relate to other parents and help them through their journeys.

Like Tracy, he believes more could be done to help their children. “Special needs education is not the best in Sheffield,” he says. “Inputs from social care are not great in the city, and have been inadequate on several occasions with minimal accessibility.”

Tara Elsmore, 37, is a diabetes specialist nurse and mum to four-year-old Grace, who also has Down’s Syndrome. Grace was born during the Covid pandemic in 2020. 

She started learning Makaton, a form of sign language, while  she was pregnant and was told her daughter would be born with Down’s Syndrome. She is now able to communicate with her daughter, who suffers with hearing difficulties and does not quite like wearing a hearing band. 

Stanley, a cheerful 15-year-old teenager, was diagnosed with Down’s Syndrome when he was born. He goes to a special school where he receives speech therapy, and enjoys sports, as well as cooking

According to his mum, Sarah Hooker, 54, her son is very social and enjoys being with his family and friends. He loves learning about the history of King Henry, and “being on the telly”.

Sarah is the fundraising manager of Sheffield Down’s Syndrome group. She explains securing support for her son, since he started secondary school at age 11, has been increasingly difficult due to a lack of funding for the educational system. But the support group has helped her meet other parents and create speech therapy groups for their children. 

“Stanley is just like every other teenager,” Sarah says. “He has opportunities to be independent and understand that he can have a separate life than us.”

Common misconceptions about Down’s Syndrome:

“People often think that children with down’s are not very bright,” says Tara Elsmore. “They think that children can’t understand them, which is wrong, they are perfectly capable of communicating back. Grace is very clever.”

Bess, Amos’ mum, expands: “Each child with Down’s Syndrome has 47 chromosomes, and 46 of those are half mum and half dad, they are more like their parents than they are someone else with Down’s Syndrome.

“Sometimes we put kids with additional needs in a box, and think they can’t do normal things, but you just need to find that one thing that they are super good at, and let them try.”