I cried happy tears when my daughter said a complete sentence (Picture: Sam Carlisle)

The day my disabled daughter first said clearly ‘I want crisps please Mummy’, I felt like punching the air.

Elvi was 16 at the time and has profound learning disabilities. 

Before that day she had only been able to make one word demands like ‘toast’ and ‘iPad’ but the dedicated speech and language therapist at her special school had expanded her vocabulary and taught her to make sentences.

For me, that one sentence, the result of all that work with the specialist, was the equivalent of her winning an Oscar. I cried happy tears, then proudly gave her a bag of Walkers.

So when I saw a recent post from parenting forum Mumsnet, after it went viral on X, formerly Twitter, that suggested education for severely disabled children like Elvi is too expensive after it, it felt like I’d been punched in the stomach.

‘As a genuine question,’ the comment – subsequently deleted by site moderators – started, ‘why do children with such complex and severe SEN need to be in school?

‘They’re not ever going to be employed or use what they’ve learned in their education, £2.5million just seems to be a very expensive holding pen. And I’m going to guess this is what the majority of other readers will be thinking.’

Wow.

I’ve been distressed by a number of stories about disabled children (Picture: Sam Carlisle)

That language – especially ‘holding pen’ – just shows a lack of compassion and judgement that lives like Elvi’s are somehow less valuable. It felt to me like it’s straight out of a parenting guide to eugenics.

My take might sound dramatic, but if you don’t consider children worth the expense of an education, it doesn’t seem to me to be too great a leap to assume you probably don’t think they are worth the cost of a ventilator or a feeding tube that might keep a severely disabled child alive.

The Mumsnet remark came after the BBC ran a story about Leeds City Council paying Stafford Hall School in Halifax £2.5million for one child’s placement. But it didn’t say how long the child had been at that school, quite possibly they had been there from the age of 11 to 19.

It also didn’t say the school is residential, which is sometimes required for children with complex needs because it is impossible to stay awake 24/7 as a parent. 

Gillian Keegan has made a number of offensive comments (Picture: PA)

Or that such a placement is extremely rare. The Government’s own statistics suggest £6,000 is the upper threshold for SEND places. 

In better times, I would pass this ill-informed Mumsnet post off as a remark from a mother so full of self-hatred and prosecco that she takes her anger out on disabled children.

God forbid her darling child falls off a slide or runs into a busy road to chase a ball and becomes one of thousands of young people every year who suddenly acquires a brain injury – the leading cause of disability in children.

I am pretty sure her attitude to disabled children would change.

But I don’t have the luxury to ignore her bile because we live in a time when the rights of disabled children feel seriously under threat. The very institutions that are meant to support and protect our kids are turning on them.

It’s deeply worrying to think children like Elvi could be targeted (Picture: Sam Carlisle)

It’s not just this mum who considers our children less worthy, it’s our politicians and decision-makers, too. 

Many local councils are in trouble financially, some have already declared bankruptcy. 

But rather than blame lack of funding from the central government or the fact that some authorities have catastrophically mismanaged their finances, they are blaming the cost of disabled children.

I was distressed by one story in particular from North Yorkshire, where a council official from Rishi Sunak’s constituency told journalists, ‘It is getting to the stage where children with mild difficulties are taking funds away from children who actually need it. It is just unsustainable.’

The parents of special needs pupils who have left jobs, lost relationships and are exhausted from caring for their children without support are also terrified by the output from politicians.

Communities Minister Michael Gove recently told a conference that councils had to distinguish between ‘deserving’ cases, ‘rather than those with the loudest voices, or the deepest pockets, or the most persistent lawyers.’

While Secretary Gillian Keegan thought it was OK to talk to a headteachers’ conference about parents of disabled children like me apparently exploiting a ‘tribunal factor’ to secure access to the best schools. 

It’s deeply worrying to think we might be targeted in this way. It’s not about ‘demand’, it’s about ‘need’. 

I’m concerned that that provision for children with special needs is seen as fair game, whether from an online troll or a government minister. 

So I can’t ignore this mum’s comments. There is just too much at stake.

She is being immoral and is playing a very dangerous game.

We have to stop this narrative that our children are somehow different or less worthy of funding. 

Quite simply, we have to value all lives.

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The day my disabled daughter first said clearly ‘I want crisps please Mummy’, I felt like punching the air.