Wednesday 21 August 2019

'Don't let my boy's pleas fall on deaf ears'

Last week, Mark O'Keeffe wrote in this newspaper about his son Riley, and some of Ireland listened, writes Sarah Caden

FIGHTING: Mark O’Keeffe with his five-year-old son Riley who is struggling to find a school place for this September
FIGHTING: Mark O’Keeffe with his five-year-old son Riley who is struggling to find a school place for this September
HELLO: Riley says his first real word into an RTE microphone

Sarah Caden

In last Sunday's LIFE magazine, celebrity hairdresser, founder of Sugar Culture salons and "rookie autism campaigner" Mark O'Keeffe wrote a letter to his five-year-old son, Riley.

Mark was sick of writing letters, begging for a school place this September for Riley, who has autism. He has been turned down by every school in north County Dublin to which he has applied.

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No one seemed to be listening, so Mark wrote a public letter to his little boy, desperate for Riley to hear his love, his pride in him, his determination to get him the best start in life.

The new school year is approaching fast, and Mark and his fiancee Aimee Penco cannot believe that there is no school place for Riley. He needs the support of an ASD (Autism Spectrum Disorder) unit, and none of the schools in their wider area with such a unit, to which they have applied, can take him.

He has nowhere. And Mark was sick of letters telling Riley that he was "not good enough".

"I signed off my letter in LIFE by saying that I hoped Ireland was listening," Mark said to me late last week. "And Ireland did not let me down. Ireland listened to me and sent my family a tsunami of love and support that has buoyed us up and bolstered our determination to get our child the education to which he is entitled.

"From the bottom of my heart, thank you so very, very much. I have never felt so much positivity from friends, acquaintances and strangers alike. If good wishes alone could get my son an education, Riley would have a PhD by now."

As result of his letter, Riley's story went right across the media last week. He is a captivating kid, with his top knot and his sweet smile and he proved himself a natural in front of the camera.

"It's been a hectic week," Mark says, "with appearances on TV, on various radio stations, on the news and we even had online clips go viral.

"However, the highlight of the week was Riley saying his first real word. We had RTE News out to the house. Riley loved the recording equipment and grabbed a mic shouting "hello" into it. We were gobsmacked! It seemed all he needed was a camera crew and a microphone. I knew he was going to be a rock star."

Naturally, Mark and Aimee, who are also parents to baby Frankie, heard from hundreds of parents with children in similar situations to Riley. Children with no school place because suitable supports are not available. Children who can't get clinical support. Children who have lost their speech while waiting for a school place.

Mark felt the comfort of community, but he also saw up close that there is a lot of despair out there.

"There are hundreds of children in the exact same boat as Riley and they are being left at home to quite literally rot," he says.

He tells me about a parent who has three children all on the spectrum. These children go to three different schools, with friends and family co-opted in to help with drop-offs and collections. Another parent told him how they kept their other children out of school in order to draw the attention of authorities and, with any luck, highlight the case of their child with autism that way.

"They were willing to be prosecuted to finally get someone to listen to them," Mark says in horror.

"What has amazed me in these past few days is how surprised people outside of the autism community were to hear that there are children in 2019 Ireland that are being denied an education," he adds. "It's true! There are hundreds, if not thousands of them. They are left at home, outside of the system and nobody apart from their parents really gives a damn."

Mark had three children from his previous marriage before he and Aimee had Riley. He knows now that he took for granted that they would reach all the expected milestones and go through all the usual routes of education. He knows now that he took a lot for granted.

Having Riley has shown him that and he knows that he once was one of those people who assume that a constitutional right to education means exactly that. They assume that there is a place for every child, because that's what they are told. And yet, as Mark says, there are hundreds of children like his Riley, who do not have a school place because there is no appropriate, properly supportive place available.

The Education (Admission to Schools) Act 2018 provides for the Minister for Education and Skills to compel schools to make additional provisions for children with special needs, but this has been slow to happen. Schools can, and do, refuse children whose needs they cannot meet. They also decline to put the necessary supports in place. The department's power to compel is something that current minister, Joe McHugh, sees as "the measure of last resort" but he has, in recent months, put pressure on several schools in this regard.

The resistance on the part of many schools to go the extra mile for children with additional needs would surprise many people, who now regard Ireland as a country of model inclusivity.

Mark O'Keeffe surprised many people out of that illusion last Sunday.

Still, despite the massive response that reassured Mark that Ireland was listening, he has yet to hear from anyone who can make a change for Riley.

"In the past seven days, my son has both literally and figuratively found his voice," Mark says. "Leo Varadkar, Minister McHugh, where are yours? Minister, you are my boy's last hope. Please, please, please do not let his pleas fall on deaf ears. I am publicly begging you.

"By the way," Mark adds with a laugh. "Riley says hello. Now, what do you have to say to him?"

Sunday Independent

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