Sunday 22 September 2019

'We shouldn't have to fight a two-year battle for our son's school place' - Mark O'Keeffe

As children get ready to go back to school, celebrity hairdresser and Sugar Culture founder and chief executive Mark O'Keeffe explains why he is eternally grateful his autistic son Riley is actually starting school, and why there are hundreds of others like him who are not so lucky

Riley with his dad Mark O'Keefe.
Riley with his dad Mark O'Keefe.
After a two-year fight by his parents, Riley finally has a school place but many other children have not been so lucky

Mark O'Keeffe

After two months of the summer holidays, listening to complaints of boredom and struggling with childcare problems, there are parents the length and breadth of this country breathing a deep sigh of relief today as the majority of primary school children are back in school on a full-time basis on Monday morning.

After two years of endless campaigning, writing letters, protesting to the Dail, begging the Education Minister to listen to my public pleas and being rejected by every school we applied to, we are breathing a deep sigh of relief our child is actually going to any school at all.

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Yes, Riley finally got accepted to school and starts.

For this I feel grateful, blessed and incredibly lucky. It feels like I have won the Lotto. I know such words as 'grateful', 'blessed' and 'lucky' must surely seem excessive to any parent who doesn't know the battle parents of autistic children face to get them an education.

If your child is typical, you probably never even noticed that little special needs box at the bottom of the application form. A tick in that box sounds the death knell for children like Riley.

Regular readers of this newspaper may be aware I wrote a letter to Riley, my non-verbal, brave, beautiful, clever, almost six-year-old. I wanted to counter-balance all the rejection he has received from official Ireland in his young life, and to tell him he is perfect exactly as he is.

I promised him his daddy would be his voice until he learned to talk for himself. I wrote that letter out of desperation because I literally had no one else left I could write to. I had written to everyone I could think of and, mostly, I was just ignored.

How Riley got his place in school is entirely coincidental to any article I wrote. A friend mentioned there was a school opening nearby and it was actively encouraging applications.

At this stage we had been refused by every single school we had applied to in the Dublin 13 and Dublin 9 areas.

This time, I talked my partner, Aimee, into leaving that special needs box empty. Days later Aimee got a call from the principal excitedly telling her they would be delighted to accept Riley and that she would meet in the coming days to discuss further.

Aimee could not sleep as her meeting with the principal loomed. She felt like a child again and was being summoned to the principal's office for a bollocking.

However, luckily for us, the principal is an understanding, compassionate woman and accepted Riley into the school.

While it did not directly help my son, what did emerge as a result of me going public is the magnitude of the problem in this country.

Thousands of desperate parents reached out to me. The stories I heard would send chills down your spine. One mother went on hunger strike to get her child a place in school.

Countless fathers contacted me to tell me how helpless they felt trying to support their partners. I know that feeling. I listened. That's all I can do. I can listen and I can ask our Education Minister, Joe McHugh, to listen too. Listen and engage.

The Government was, and remains, deaf to these parents. I publicly begged the Education Minister to contact me, but his silence was deafening.

Indeed, days after the 'Letter to Riley' was published I was sitting down to yet another interview to try to get the Education Minister to engage, I was horrified to see him busy at a golfing launch.

One of the first things I learned as the parent of an autistic child was the importance of early intervention. Well, let me tell you about early intervention in this country. Children go on years-long waiting lists to even get a diagnosis before going back on years-long waiting lists to access any clinical support services, such as speech therapy, occupational therapy or psychological support.

By the time anything gets done, children are growing up, the autism is set in, and early intervention becomes 'sorry, it's too late intervention'. And here's the real kicker - while autistic children have no school place, they are removed from clinical support waiting lists. It's true!

The only correspondence I received while reaching out to the Government this summer, desperate for help, was a letter from the HSE to say Riley had been taken off the clinical support waiting lists he had been on for years because he was not signed up for school.

From diagnosis to speech therapy, Riley has never received any help from the Government. How many autistic children are there with no school place in this country? Nobody, except the Government, really knows.

The figure most widely used of more than 300, is a number from autism charity AsIam.

This number is misleading because it is based on a survey parents opt into taking while on its website.

It in no way reflects the real number of children without a school place tomorrow.

The person who runs the charity believes there are about 1,000 such children.

Judging by the number of parents getting in touch with me, there are at least a thousand.

The Government knows the number because they have access to all of the waiting lists for clinical support. They know how many children are autistic, where they are and the likely demand for schools.

Just over a week ago, Mr McHugh issued a press release to newsrooms stating he had sent a letter to six schools in the Dublin 15 area to encourage them to open special needs units.

School starts tomorrow, so that's too little too late. What about all the other children elsewhere in Dublin and around the country that he is well aware of?

Mr McHugh writes: "Ensuring that every child has a suitable placement available to them for the new school year is a key priority for me and the Government."

It clearly is not because, if it were, school places would be available to them tomorrow. There are no excuses.

While one in 50 children today is on the spectrum, schools have been reluctant to accept them. New legislation means the minister has the power to compel schools to cater to children with special needs.

Mr McHugh continually says that he would prefer "to see children welcomed into a school without the need for legal compulsion". Why the hell not?

If he will not use these special powers now at a time of national crisis, then when? Now is not the time for niceties. Nor holidays. Nor golf launches for that matter.

Now is a time for meaningful action - get our children into school. Now!

Despite the Government, Riley is going to school.

The Government will pay for its initial deafening silence and subsequent tone-deaf response in the polls.

I have witnessed it first hand - the people of Ireland are outraged by the treatment of our most vulnerable and needy children.

At the end of the day, the power lies with the electorate, not the elected.

To get Riley to school, we waged a two-year war and finally emerged victorious with just days to go, emotionally beaten, bruised, bloody, bashed and battle-weary.

For hundreds of others around the country today, that battle continues.

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