'Our daughter is our light, our princess'

Leni has been going to the support group for two years with her daughter, Tahira

A support group for mums and carers who look after children with special educational needs and disabilities (Send) has been described as "life-changing".

The Julaybib Project, based in Peterborough, was set up by Natalia Zaman and Amina Ahmed - who both have children with additional needs - to provide a safe space for all, but especially those from the South Asian community.

Mrs Zaman said they faced struggles on "multiple-layers, including stigma from within their own families" and she hoped the project could "give them a voice."

It holds fortnightly coffee mornings at the city's Gladstone Street Children's Centre, alongside professionals from disability charities and the council.

Natalia Zaman is "passionate" about running the Julaybib Project in Peterborough

Mrs Zaman said she felt having a child with Send was "still a taboo within the South Asian community".

She said sometimes mums - who she described as doing an "amazing job" - were "blamed and shamed".

After a 20-week scan during her third pregnancy, she was told her child might have "severe disabilities and a poor quality of life" and she was offered a termination.

"It was the most devastating news," she said.

"We were really excited for a girl after two boys, but to be told this made me very worried, especially with no family here, but she brought me closer to my faith at so many levels.

"I faced a backlash from the community, who blamed my previous life for it.

"The mums face huge challenges, from long waiting times for assessments and appointments and an added layer of stigma and cultural and language barriers."

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Leni said she often feels lonely at home and finds attending the coffee morning helpful

Leni has been going to the group since it was set up two years ago.

Her four-year-old daughter, Tahira, has Down's syndrome, an underactive thyroid, and recently had surgery for a heart defect.

The mum-of-three said: "This group is really nice and helps me a lot.

"When you are lonely at home and [you] come here it's good and you can make friends.

"I come to listen to others' experiences and take away information for myself.

"If they have problems, you have professionals here to help you. It is life-changing for us in need of help.

"Our daughter is our light, our princess and we are so grateful for this group and all the support she is getting from the medical and council professionals."

The Julaybib Project relies on fund-raising and volunteers to keep going.

It also runs a WhatsApp support group and and organises play-dates with the children's charity Little Miracles.

'Breaking down barriers'

Carole Darlow is parent care lead for Caring Together, a charity supporting unpaid carers across Cambridgeshire, Peterborough and parts of Norfolk.

She said demand from parents was "unprecedented", adding that the local authorities were finding things "really difficult".

She said: "We have seen it [the Julaybib Project] flourish and grow and seen the confidence that it has given these parents in having a voice.

"Peer support is so important and if this group was not set up, the families would feel even more isolated.

"She is bringing them together every fortnight to share experience and have a moral support. She is breaking down barriers for them."