When Nitsan and Daniel’s second daughter Carmel was born, she showed signs of Cornelia de Lange Syndrome (CdLS) – a rare genetic disorder which can cause learning disabilities
Pregnancy scans had raised concerns, but initial tests were negative, and they had hoped for the best. At two weeks old, Carmel needed emergency heart surgery. After they pushed to see a geneticist, CdLS was confirmed by blood tests.
“That was the start of our new life,” says Nitsan.
As Carmel grew, her needs became more evident. Her speech was delayed, and at pre-school she fell behind her peers and relied on Makaton, a type of communication which combines signs, symbols and speech.
Carmel has space to unwind at Unity. Photo by Amber pollack Photography[Missing Credit]
Carmel also struggles socially. In reception at her mainstream school, where she has one-to-one support, she began showing anxious, unpredictable and physical behaviour, including taking risks and sometimes hitting or pushing others.
“We realised Carmel was masking,” says Nitsan. “As a psychotherapist and social worker, I knew of Norwood’s support for families of children with learning disabilities – and realised I was now one of those parents,” she added.
Nitsan approached Norwood and its team offered her one-to-one parenting support. Over six bespoke sessions, Nitsan gained the practical tools, reassurance and confidence to help strengthen family relationships and encourage positive behaviours at home.
Nitsan’s Norwood support worker also provided tailored advice, helping her respond to Carmel’s toileting needs and anxiety about school. When Nitsan mentioned she needed safe, understanding holiday support for Carmel, her support worker helped her secure short-breaks funding.
Carmel began attending one of the weekly Sunday clubs at Unity, Norwood’s specially adapted community club for children with learning disabilities. Unity provides joyful experiences for neurodivergent children that best suits them, giving their parents essential time to rest and recharge.
The Unity team invited Carmel to visit and supported her to gain confidence in her new environment and build trust and familiarity with her one-to-one support worker. And while toileting support at school had made Carmel feel different, at Unity staff protected her dignity and offered choice, reassurance and gentle encouragement, ensuring support felt safe and normal.
“Carmel now goes to Unity on Sundays, Thursday afternoons and during school holidays and she adores it,” says Nitsan.
“Accepting that Carmel needed specialist provision was a big transition. Unity gives her time each week to be herself, without the pressure of adapting to a mainstream environment. On Unity days, Carmel wakes up excited. She gets the social environment and space to unwind that she needs, while Daniel and I get a vital break,” she adds.
Carmel and her family are among the 896 neurodivergent children and adult family members supported by Norwood’s children and family services.
They turn to Norwood in confidence, knowing they will be listened to, understood and guided towards the right help.
For more information on Norwood’s short breaks, family support services, courses and workshops providing support for every member of the family of neurodivergent children, see norwood services
Registered charity 1059050
