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Why parents of kids with additional needs should not be forced to go public

April is autism awareness month. It’s a noble idea but, unfortunately, many Irish children already live in a country that is well aware of their additional needs but still fails to respond to them. This week, we got a new Taoiseach. Simon Harris has credited witnessing someone he loved trying to access autism supports as the thing that galvanised him to get into politics in the first place. It was Harris’s desire to try to make the world a better place for his brother, Adam, that propelled him into the world of advocacy when he was only a teenager.

While the Ireland that we live in now is certainly one that is more aware, sensitive and educated about autism, progress on this issue has not been linear. In many ways, particularly in terms of waiting times for both assessments and interventions, things have gotten much worse. One wonders what the articulate, passionate and righteous 15-year-old Simon Harris would make of his own Government’s record on this issue, after 13 years in power?

Some children are left waiting so long for health and educational supports that they are entitled to, that they have actually aged out of them before they can access them. In lieu of appropriate state supports, desperate parents are taking online classes to try to teach themselves how to provide potentially life-changing interventions to their small children. None of us can truly understand the toll that this takes on a family.

Parents of children with additional needs in Ireland live in a country that doesn’t permit them to enjoy being mothers and fathers. They have to become advocates, litigants, full-time carers, educators. Careers are abandoned, relationships between parents can become strained and loveless. Time and attention due to other siblings is gobbled up by time spent researching, begging and pleading with the public disability services.

Then there are private services. I spoke to a mother before who recalled how a HSE public health nurse reached across to her and told her in no uncertain terms to beg, borrow and steal whatever she needed to be able to afford to go private for her child. Long delays for health interventions are torture for a parent, who has to watch a small person regress in real time on a public waiting list.

We sometimes talk about those with “the means” go private. The primal fear for their child often means that those who really don’t have the means will go private, too — spending a deposit that they had saved for a house, remortgaging, the child’s grandparents remortgaging, through debt. But even for those who manage to claw the funds together, accessing a private psychologist can also be a lottery due to extremely high demand. And that is before you consider the small but existent cohort of sharks, who exploit the unprotected title of psychologist to bleed desperate parents dry, without having the appropriate qualifications to carry out assessments at all.

Parents become even more desperate. Journalists like me end up being invited into people’s houses. We, as total strangers, sit at their kitchen tables as parents pour their hearts out. We take pictures of their toddlers and put them into the newspaper or on the television. As is so often the case in this country, some of the most vulnerable people in society have to embarrass the Government into helping them through the public pressure of the media.

I find covering the issues experienced by the families of children with additional needs to be one of the bleakest topics. Mothers have shown me thick sheaves of paper, full emails that they’ve sent to TDs, ministers, their local disability team that they’ve written late at night with their eyes swimming. And then say that a media interview is the first time they’ve felt listened to. How is that right?

There have been times in the past where parents have turned to this newspaper for help. And, after their story is covered, a call might come. Services that previously seemed to be non-existent and inaccessible are conjured from thin air. And that is a good thing. But it has a little bit of a sour taste.

Nobody should have to sacrifice their family’s privacy in exchange for access to resources. Parents should not have to tell the entire country about the depression that consumes them, as they spend every waking hour fighting like tigers for their children. But I don’t blame any parent who tries to get help from the media — I would try it too. Because, often, it seems to be the only thing that works.

A political system that’s only moved to respond to the needs of children who go public is an amoral one. Because it is implicitly turning children with additional needs into charity cases, instead of rights holders who live in a country operating a dereliction of duty.

Time and again, it is only when parents turn to the external forces of either the media or the legal system that the sluggish State starts to respond. Not every family is in a position to put their story in the paper, or take the State to court. Ireland has a lot more to do than just be “aware” of children with additional needs.

‘After their story is covered, a call might come. Services that previously seemed to be nonexistent and inaccessible are conjured from thin air’