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Fionola Meredith

Why children with profound special needs, and struggling families, need urgent help

Fionola Meredith


Fionola Meredith is shocked to learn how these vulnerable youngsters appear to have been forgotten

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Special care schools are shut and pupils are missing out on activities like using calm rooms

Special care schools are shut and pupils are missing out on activities like using calm rooms

Special care schools are shut and pupils are missing out on activities like using calm rooms

Are the kids alright? There are no easy answers to that question. With schools in Northern Ireland closed, almost certainly until September, a whole generation of young people is facing an unprecedented interruption to their formal education, with unknown consequences stretching far into the future.

As Unesco points out, school closures carry high social and economic costs, particularly for less-privileged youngsters and their families.

Lessons beamed in over the internet can never replicate the rounded, holistic educational experience of being at school alongside schoolmates.

And what about the kids who don't have the luxury of owning an iPad so they can participate?

The impact is bad enough for children in mainstream education, with many important skills lost - especially among the youngest - which may never be fully regained.

But there is one group which is suffering more during this crisis than any other, and yet we hear almost nothing about their appalling plight. They are the children and young people with profound special educational needs.

Nine weeks into the educational shutdown, these kids and their families are close to breaking point.

Donna Jennings tells me that her 12-year-old son Micah, who has autism and severe learning difficulties, is lost without school.

Everything which is familiar has been taken away from him: the daily routines, the structures, the familiar activities happening in a familiar space.

In the absence of the hands-on, practical, one-to-one professional care that he needs, Micah's distress manifests itself in "full-on meltdowns", with kicking, biting and lashing out.

Because he has no safety awareness, Micah must be kept under constant supervision. He sleeps very little, going to bed at 11pm and waking up at 4am.

A friend of Donna's, who has a child with similar needs, is able to sleep for only two hours a night.

How can you hold down a job on two hours of sleep a night?

How can you keep your marriage going when every exhausting minute of every exhausting day is taken up with keeping your child safe?

For families like this, the resumption of education for their children comes second to the desperate need for respite care. The gap left by the closure of Micah's special school is unfillable.

The Jennings presently rely on a small, but vital, amount of respite care from two charities, Solas and Kids Together, which are themselves under huge financial strain. It's nowhere near enough.

So do different lives have different values?

That's what Marian Bradley, whose 17-year-old daughter Meabh has cerebral palsy, wants to know. "Where do disabled people fit in, when it comes to decision-making?" she asks. "As far as I can see, they don't fit in at all."

Meabh, who is non-verbal, has benefited enormously from her time at special school. After years and years of painstaking work, she is now able to communicate with her family using a computer, which feels miraculous for everyone.

Practical skills are only one part of the unique partnership between health and education that special schools, at their best, can provide.

Marian tells me that for young people like Meabh, school means emotional support, socialisation, a place where they know that they are accepted, a place where they can grieve the limits their conditions place on their lives.

"Every single day Meabh has left in school is so precious," says Marian. "The loss of that is huge. Will she be given those days back?"

But Marian also admits that she is feeling very let down by the teachers at her daughter's school. She and Meabh have not been out of their front gate since early March; Marian wholeheartedly supports the need to shield such especially vulnerable children.

But why can't the teachers at least offer Zoom lessons, she asks, as they do in mainstream schools? Why have these young people and their families been cast adrift, to cope on their own, or with the help of a few small under-funded charities?

For those who are suffering most, Donna Jennings believes that the only answer is for schools, social services, the Public Health Agency (PHA), churches, community groups and other key players to sit down around a table and work out a way to cope, starting with the families who are currently closest to complete breakdown.

The need could not be more urgent.

Every life is valuable, in and of itself. Our government must act now and fulfil its duty of care to these children and their families, who are among the most voiceless in society.

They are the invisible victims of the coronavirus crisis. They must be seen - and heard.

Belfast Telegraph