Many parents will be familiar with the old adage: “It takes a village to raise a child.” In practice, that village may include grandparents helping with childcare, friends and colleagues offering advice, and the expertise from various professionals at different stages of their child’s development.
But for parent carers of neurodivergent children, whether they are younger or grown adults, that village often looks very different.
Friends and extended family may not feel confident stepping in. Everyday parts of community life, including synagogue services, youth groups, holiday clubs, or social events can be harder to access or navigate, and too many families cannot access any resources within the Jewish community.
While there are excellent organisations offering support, families are often left to find their own way through these. The end result is that many parent carers bear more of this burden on their own than people – even their close families – can comprehend. Balancing the day-to-day, planning ahead, and trying to figure out what may or may not be possible can be exhausting. Over time, some families find themselves stepping back from parts of community life altogether.
Then there is another aspect: the frequent need to organise multiple appointments across all disciplines – education, various therapies, medical appointments and social care. Sometimes, a parent carer can feel they are more like the family’s PA, as appointments and the ongoing need to liaise with so many professionals become part of the “norm”.
And no, the pace doesn’t slow down as the child transitions into adolescence and beyond. If anything, the burden shifts as support naturally narrows, with fewer resources to lean on and fewer hands to help carry the load.
As young adults, they may not yet have the mental capacity or practical skills to manage parts of life that could offer parent carers some respite. Consequently, parent carers find themselves in a painful paradox: their child is now older, yet still needs the same level of guidance, scaffolding – sometimes even more, but the community support available has now diminished further. The buffers that once provided structure and relief begin to fall away: the predictable rhythm of school disappears, college hours fall short, holidays seem endless; families are faced with growing gaps and the constant challenge to find new ways to fill them. This is where community becomes so essential – it provides a constant when nearly everything else has fallen away.
As a community, we have good intentions and we want to help. However, unless we grasp the scale of the challenge for these families, it is difficult to respond in ways that genuinely make participation easier and meaningful.
Belonging Matters, a neurodiversity conference for the community – co-hosted by Norwood, the United Synagogue and Gesher School, and in partnership with the JC – has been created in response to this. It will bring together families, professionals and community organisations to explore how Jewish communal life can become more inclusive in practice.
By coming together in the spirit of real collaboration, we can begin the process of scaling the problem and owning the solution. It is about recognising that we all play a role in shaping inclusion.
By pooling our resources, charities, synagogues, schools, youth movements and community groups, we can all contribute to whether people feel able to take part. And through joined-up practice, we can start to be truly inclusive of neurodivergent people.
We’re not promising instant solutions. What we are hoping to offer are practical, manageable steps toward building a more disability‑inclusive community. We want participants to leave not only with increased clarity but also feeling that something tangible and achievable is now within reach.
One of the conference sessions explores what it really means to “be the village” – how communities can better support parent carers so that no family feels they are navigating this alone.
Because belonging isn’t just about being present. It’s about feeling comfortable, understood, and able to participate and contribute. We hope you’ll join the conversation with us.
Belonging Matters, in partnership with the JC, will take place on April 27:
Go to: theus.org.uk/belonging-matters-programme or click here to book your place
Rivka Steinberg is disability inclusion advocate at the United Synagogue; Emma Gray is director of children & family services at Norwood
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