The sad truth for us, as for many parents, when our yearned for child arrived, was that it was clear something was wrong; or rather, we knew from day one that things were not as they should be.
We experienced the gradual awakening that we would not go through life as parents of a typical child, following a hideous labour, and the “reassurance” that we would know more at each milestone. Of course, every child is unique, but the experience of disability puts you as parents into a different yet parallel space.
Our son’s difficulties “blossomed” as time went by. The challenges of life multiplied. Social interaction, working memory, concentration, communication, dexterity – how long would it take to get a bloody pen licence? – while his abject misery at school went unheeded by teachers.
We chose Jewish schools as we both wanted our child to experience a Jewish learning environment. By Year 3, it was clear that the school had neither the resources, know-how, nor, it seemed, the interest in supporting a child who was clearly not coping or keeping pace with his peers.
I recall crying in the car park in despair after a drop-off, phoning a Jewish charity for support, only to be told that, at 13, he was too young to be helped by its service
In those days, there were Statements of Special Educational Needs (now Education Health and Care Plans). It took enormous persuasion to get any support from the school for the private educational psychology assessment we were obliged to obtain. It refused to make a referral, even though all were agreed our son was likely on the autistic spectrum.
And so it began: relentless battles, the time and cost of commissioning reports, navigating a system the school was ill-equipped to manage. We learnt “on the job” (while trying to maintain full-time employment).
Then, on top of everything else, we were phoning parents to ask them to teach their children to stop bullying ours, managing the limited invitations, or the social exclusion if there were invitations to parties, barmitzvahs etc, all alongside the day-to-day struggle to get our six, seven, eight, nine, ten-year-old to go to school, where he felt increasingly isolated and excluded.
Transition to secondary school was worse. We selected a Jewish secondary school that claimed a good record on supporting SEN children. But it managed to fail him spectacularly, resulting in a full mental health breakdown, and he spent the next two school years effectively out of school or spent sitting in a resource room for two to three hours some days of the week.
I recall crying in the car park in despair after a drop-off, phoning a Jewish charity for support, only to be told that, at 13, he was too young to be helped by its service. We had one of the first United Synagogue minchah barmitzvahs, which are now more commonplace for children with additional needs, but shul was always a tough and isolating environment.
There remains a huge gap in any true understanding of autism and its very wide spectrum of presentations, worse still the comorbid mental ill health experienced by one in three autistic people
We went on to battle with the school and our local authority to get him out of the Jewish secondary school after we came across a small specialist C of E school further away from our home. With a Herculean effort we were given local authority funding. The school was the making of him. But it was lonely, miserable and shameful that there was nothing for us in our own community.
A levels presented the next challenge. Our son had the capacity to learn and wanted to be in Jewish education. Yet again, he was failed by the lack of experience, resources and insight of existing Jewish schools. There was no place for him.
As a young adult, education morphed into efforts to find support for managing life and daily living. There are undoubtedly some excellent Jewish organisations supporting disabled people. However, in our experience, there remains a huge gap in any true understanding of autism and its very wide spectrum of presentations, worse still the comorbid mental ill health experienced by one in three autistic people.
We had to “teach” and explain. In fairness, that was not limited to the Jewish community but also wider community mental health services. Consequently, we continue to battle just to help our son live his life.
I wish there was a happy ending, but it's not yet, by far. The experience of parenting neurodiverse children is as unique as they are. We have found it isolating, lonely, embattled and exhausting, just as life is for these young people. There is no training for parents, nothing to help us work out how to steer and struggle to obtain support, friendship, care, education or employment for our entirely deserving child. If you know parents with neurodiverse children, be compassionate. They are doing their absolute best with no fuel and no compass.
On April 27, Norwood, the United Synagogue and Gesher School, in partnership with the JC, is hosting Belonging Matters – a one-day conference. It will bring together people with lived experience, professional expertise and best practice to inspire meaningful change to build inclusive, welcoming Jewish communities, where neurodivergent individuals and their families truly belong. To book tickets, click here or go to: thejc.com/events/belonging-matters-neurodiversity-conference-uc68ot9g
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