{"id":72547,"date":"2025-03-24T15:58:45","date_gmt":"2025-03-24T15:58:45","guid":{"rendered":"https:\/\/sheffieldwire.co.uk\/?p=72547"},"modified":"2025-03-24T16:43:54","modified_gmt":"2025-03-24T16:43:54","slug":"parents-gather-in-sheffield-to-celebrate-downs-syndrome-awareness-day-but-more-needs-to-be-done-to-receive-support","status":"publish","type":"post","link":"https:\/\/sheffieldwire.co.uk\/index.php\/2025\/03\/24\/parents-gather-in-sheffield-to-celebrate-downs-syndrome-awareness-day-but-more-needs-to-be-done-to-receive-support\/","title":{"rendered":"Parents gather in Sheffield to celebrate Down\u2019s Syndrome Awareness Day but more needs to be done to receive support"},"content":{"rendered":"\n

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\u2019s Syndrome Support Group gather to celebrate their children\u2019s achievements. <\/p>\n\n\n\n

It\u2019s 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. <\/p>\n\n\n\n

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.<\/p>\n\n\n\n

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

\u201cAmos is empathetic, but his communication, and the way he makes someone smile are not reported in the education system,\u201d says Bess, from Sheffield.<\/p>\n\n\n\n

\u201cIt 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\u2019t achieve through tests.\u201d<\/p>\n\n\n\n

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. <\/p>\n\n\n\n

\u201cThe main challenges now are finding places where Amos can belong, where people aren\u2019t afraid of him having Down’s syndrome,\u201d says Bess. \u201cHe 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.\u201d <\/p>\n\n\n\n

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. <\/p>\n\n\n\n

Another mum, Tracy Tonks, who attended the get together explained one problem many expectant parents of children with Down\u2019s Syndrome face, is the fact they are constantly told what their unborn babies won\u2019t be able to accomplish.<\/p>\n\n\n\n

When Tracy, 49, who is originally from Sheffield, was told her daughter, Esme, would have Down\u2019s Syndrome she \u201cgrieved through the entire pregnancy\u201d after medical professionals provided a long list of things that her child could not achieve. <\/p>\n\n\n\n

\u201cNobody actually said to me that I was just going to have a baby,\u201d she says. \u201cI am ashamed of how I grieved now,\u201d she says. \u201cThe 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.\u201d<\/p>\n\n\n\n

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 \u201ctick enough boxes\u201d 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\u2019s Syndrome needing support exceeds the amount of funding received by the health and education sectors.<\/p>\n\n\n\n

\u201cIt feels like I have to beg to get help, which is scary,\u201d she says. \u201cEverything just seems to be a fight.\u201d<\/p>\n\n\n\n

Tracy explained, although Esme\u2019s mainstream school has a lot of children with special needs, her daughter doesn\u2019t get the extra help she needs with reading and writing. <\/p>\n\n\n\n

The mum says it\u2019s the Sheffield Down\u2019s 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. <\/p>\n\n\n\n

\u201cThis support group saved me,\u201d she says. \u201cIt has changed my entire perspective.\u201d<\/p>\n\n\n\n

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Tracy Tonks, with her daughter Esme<\/figcaption><\/figure>\n<\/figure>\n\n\n\n

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.<\/p>\n\n\n\n

He said it is crucial to be positive when delivering the news of a Down\u2019s 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<\/p>\n\n\n\n

\u201cOften even before the child is born or diagnosed with Down\u2019s parents are told horrific stories about what their child can and can\u2019t do,\u201d  Saurabh says. \u201cTelling the parents about medical complications is important for their health, but you can never tell them what their child can and can\u2019t achieve.\u201d<\/p>\n\n\n\n

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

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.<\/p>\n\n\n\n

Like Tracy, he believes more could be done to help their children. \u201cSpecial needs education is not the best in Sheffield,\u201d he says. \u201cInputs from social care are not great in the city, and have been inadequate on several occasions with minimal accessibility.\u201d<\/p>\n\n\n\n

Tara Elsmore, 37, is a diabetes specialist nurse and mum to four-year-old Grace, who also has Down\u2019s Syndrome. Grace was born during the Covid pandemic in 2020. <\/p>\n\n\n\n

She started learning Makaton, a form of sign language, while  she was pregnant and was told her daughter would be born with Down\u2019s Syndrome. She is now able to communicate with her daughter, who suffers with hearing difficulties and does not quite like wearing a hearing band. <\/p>\n\n\n\n

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