Life

Saturday 21 September 2019

A letter for Riley - celebrity hairdresser Mark O'Keefe's plea for his son

In a searingly honest open letter to his five-year-old son, celebrity hairdresser and Sugar Culture owner Mark O'Keefe explains the devastation of having a child diagnosed with autism and how Riley is being denied an education, as no school is prepared to offer him a place this September

Riley with his dad Mark O'Keefe.
Riley with his dad Mark O'Keefe.
Riley with his mum Aimee, dad Mark, and little brother Frankie
Riley playing with Frankie
Riley graduating from pre-school in front of his proud father
Five-year-old Riley

Mark O'Keefe

Dear Riley, My son. My heart. My love. My life. It's me, Daddy.

I hope you don't come down to see me crying, son; I know how much that would upset you. See, my heart is breaking right now for the person you could have been, the person you should have been and even the person you absolutely have the potential to be.

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As I sit here and write this, you are upstairs tucked away, all warm and snuggly, safe and sound in your brand-new bedroom in our brand-new house, with your mum nursing your tiny, brand-new brother, Frankie, in the bedroom beside you.

From the outside in, it looks like a perfect scene of domestic bliss, and all should be as perfect as it looks - as you look, with your beautiful face and cool dude haircut - but it's not. To look at you, anybody would think that you are a typical little boy enjoying the freedom of the last of the summer holidays before you start school.

Riley with his mum Aimee, dad Mark, and little brother Frankie
Riley with his mum Aimee, dad Mark, and little brother Frankie

But you are not typical, and you will not be starting school.

Not now. Maybe never. As I write this, an education is something that this country is denying you and hundreds of other children like you. All because you have been diagnosed as having autism spectrum disorder (ASD).

When I put you to bed earlier tonight, I told you that I love you, and that I am the luckiest daddy in the world because I am your daddy.

Yet, as I sit here writing this, I am surrounded by a whole pile of PFO letters from schools that your mummy and I have been applying to all year. How many letters of rejection does one little boy need to realise that he is not good enough?

I was so angered by these rejection letters that I decided I was going to sit down and write to someone to tell them exactly how I felt, and to tell them that my son is beautiful, intelligent, loving, kind, funny and absolutely perfect as he is, and why no one should be denied the basic human right of an education, especially someone like you who, as I am always being told, would benefit hugely from 'early intervention' before the autism has time to become set in.

But who should I write to? The Taoiseach? The Minister for Education? The schools' boards of management? The principals? No, son. I know one day very soon you will be able to read this, and you will tell me that you understand why I had to do this to fight for you and your education.

Riley graduating from pre-school in front of his proud father
Riley graduating from pre-school in front of his proud father

Forget all of these letters saying that you are not good enough. Your daddy is writing you a letter to cancel out all of them, to tell you that you are sheer perfection just as you are, and to promise you that I will do anything and everything I can to get you the education that you deserve.

This is my letter for you, Riley:

Riley Francis O'Keeffe. You came into this world kicking and screaming on November 9, 2013. You were the first child for your mum, Aimee, and me. I had been married before and had three children - your sisters, Charlie and Issy, and your big bro, Ely. Your mum sailed through a perfect pregnancy and had the easiest of births.

When you were born at 6lbs 2ozs, I was in awe of the tiniest, most perfectly formed human being I had ever set eyes on. You were just beautiful, with the glittering green eyes of my adored mother, Peggy, whose own eyes closed permanently much too soon after a tragic series of events, years before you were born.

Why mess with perfection?

You also had the best head of thick, spiky hair that I had ever seen. It's funny, because your mum is widely considered one of the best hairdressers in Ireland (if not the best) with all of the biggest, most prestigious awards to her name, but for years she refused to cut your hair. When I asked her why, she answered, "Why mess with perfection?"

It is true, son, you were perfect then, are perfect now, and I would not change a hair on your head. That day, I took you in my arms, half-frightened I would crush your tiny body, and made a silent vow to you that I would do everything in my power to provide for you, protect you and educate you as best I could.

Over the next two years, you hit all of your milestones right on cue: crawling at eight months, coasting along the furniture by 10 months, walking at one, and running, climbing, jumping and bumping from there on in. Although your mum and I were no longer together at that stage, we both spent a lot of time with you, both together and apart, and we both loved and adored you.

All was going well until you got sick with a gastric virus when you were two and had to be hospitalised for seizures. That, for me, is when you changed. Your beautiful green eyes that had been so full of fun and life and mischief, went dull. It was as if we lost some of your spirit. That illness took a part of your being. You changed. We changed. I did not realise what it meant then, but with the benefit of retrospection, I believe that is when you became autistic.

Once you recovered, life went on as normal. Over the next few months, we did not notice anything wrong with you, and you had none of the classic 'signs' or 'symptoms' that we are all aware are associated with autism; there were no sensory issues, no problem with eye contact or no stimming. The only concern we had was that you were late to start talking.

It was September 2016 when we took our perfect boy to the hospital to have his hearing checked. We thought you might need to have your ears drained and maybe have some grommets put in to help you hear better. You would be talking in no time... or so we thought.

I was so naive back then. I remember thinking that I would take that morning off to bring you to your doctor's appointment, and would probably be able to go back to work in the afternoon and carry on as if nothing happened. However, that was the day that would change all of our lives.

Your consultant, although brusque and gruff in his manner, casually told us that your ears were fine and told us to go off to get a diagnosis. Sorry, a what? A diagnosis? For what? From where? Were you very sick? Were you dying? I had no idea of what he was talking about, and I had to follow him out of the room to get it out of him that he was talking about autism.

Where should we go? Who would help us? We were by ourselves and we very quickly learned that the resources for diagnosing and dealing with autism are shamefully insufficient in this country. The world as I knew it fell apart in those few seconds. I remember the aimless, helpless feeling I had walking out the hospital, as I was both literally and figuratively confused about where to go from there. I didn't know whether to go left or right or straight ahead.

Dreams I ha

Over the next few months, I crashed. I had to mourn for the person I thought you were, and learn to accept the person that you really were.

I didn't realise that I already had dreams for you. I dreamed you would come work with the old man one day, managing one of the salons. I would teach you all I had learned, and learn from you along the way.

I wanted you to be a part-time rock star, but most of all, I just wanted you to have the freedom to be whoever and whatever you wanted to be. I hoped you would fall in love, get married to a wonderful woman (or man - whatever makes you happy), travel, have kids if you wanted, and live your best life. Yet, all that crashed and burned as soon as I understood what that doctor meant by 'diagnosis'.

They say that every cloud has a silver lining, and it was after you were diagnosed that I fell back in love with your mum. She was just so strong, and fought for you like no one else. I was impressed with how quickly she educated herself and the selflessness with which she fought on your behalf.

Having said that, she really should not have had to fight. She says that the biggest worry we should have had with getting you a place in school was where we left your birth cert.

We met some amazing people along the way, including Senator Aodhan O'Riordain, who really listened to us and raised the issue at government level. I get so angry when I think of your heavily pregnant mother, out in the pouring rain, protesting outside the Dail earlier this year for a place for you in school. She didn't know, but she was coming down with the mumps that day, and needed to spend time in hospital straight after that 'Enough Is Enough' protest.

Your mummy is beautiful inside and out, and trust me, son, when I say, you were blessed the day you got her as your mother.

Your diagnosis renewed a love and respect that I had for your mother. We had you in common - only she understood how I felt, and how hard I was fighting for you. We leaned on each other and could never be without each other again. We have since bought our house together, got engaged and had another baby. I will let you in on a secret, son. Without you and your diagnosis, there would be no Frankie. I am delighted that you love him so much. He brings out that tender side of you that melts my heart. You are so gentle with him. I am so proud of the big brother you are.

Your mummy always talks about how emotionally aware you are and your ability to pick up on the emotions of others. You have her wrapped around your finger, and know exactly how to push her buttons to get the result you want. She loves when you play with her ear to stop her from being angry with you. Actually, she rarely gets angry with you. She is an amazing mother.

While your mummy is impressed with your emotional intelligence, I am impressed with your intellectual ability. I know from all of your assessments and tests that you are very intelligent, but I love watching your clever mind at work.

When we had that family barbecue earlier this summer, I watched you to see how you would interact with the children in the garden. You observed your big brother scale the six-foot wall and were curious as to where he disappeared to. As you are a lot smaller than him, you could not simply climb the wall, so you gathered some bits and pieces in the garden and built your own ladder out of odds and ends. Up and over you went to find your brother. Easy as! I was so proud of you. Go on my boy!

After that fateful morning with the consultant, I educated myself on the condition, and discovered that autism is not a life sentence. People just like you can lead fulfilling, meaningful lives. Indeed, some of the most intelligent and successful people in the world are/were on the spectrum: Bill Gates. Steve Jobs, Einstein, Warhol, Darwin, Newton, Yeats and Mozart, to name but a few.

After much searching, we went privately for a diagnosis, and discovered you are mildly to moderately autistic, with a good prognosis with the right support. You have delayed speech, but are very likely to acquire speech; you just need to be taught. Unfortunately, you will not be taught - not how to speak, read, write, or anything else for that matter.

There is no school in the Dublin 13 area where we live (and Dublin 9, where your maternal grandparents live) that is willing to take you, and as far as the State is concerned, you, and hundreds of children like you, can sit home and rot while 'normal' children get their entitlement of an education. I would be prosecuted for not sending your 'normal' siblings to school and ensuring their education; I am guessing that Tusla would be after me quick-smart, but nobody gives a damn about you.

Shame on us

When Fianna Fail Education Minister Donogh O'Malley famously announced the introduction of free secondary education on September 10, 1966, he said: "We will be judged by future generations on what we did for the children of our time".

Well, shame on us for refusing the most vulnerable, yet potentially brilliant, children in our society the basic human right to an education. We are treating an entire section of society as second-class citizens, and are condemning them to a dark future of nothingness.

What happened to the wonderful, accepting, inclusive country that has recently emerged from the dark ages to grant equal legal status to the LGBTQ community and allow women the right to autonomy over their own sexual and reproductive health?

This issue is today's dark stain on the national conscience.

Why is it ok that Ireland 2019 is treating its children with such disrespect and disdain? Why are we not all shouting about this issue? Why are those who are shouting not being listened to?

The litmus test for the quality of any civilised society is the way it treats those on the fringes, who are potentially society's most vulnerable members.

Ireland, listen to my silent son's father. I speak for him and the hundreds like him. The time has now come for us to finally address this issue by drawing those of our children who have ASD in from the margins and meeting their most fundamental of needs, starting with real and meaningful access to education.

I am not asking for special treatment, or for anything that you are not entitled to. This right to education has very sound legal footing in this country. I just mentioned a couple of constitutional changes that occurred in Ireland in the space of your little lifetime that make me very, very proud to call myself Irish.

Yet, a corollary to that is that your right to an education has been enshrined in the Constitution ever since it was drafted. Within Article 42.4 of the Constitution, there is a constitutional obligation upon the State to provide for free, basic, elementary education of all children.

The Supreme Court has held that such education constitutes "…giving each child such advice, instruction and teaching as would enable him or her to make the best possible use of his or her inherent and potential capacities, physical, mental or moral, however limited these capacities might be".

The Constitution is the pinnacle of all Irish law, taking precedence over any legislation or case law. Yet, there is a widespread flouting of constitutional educational rights of all children in this country.

On an international level, Article 2 of Protocol No 1 to the European Convention on Human Rights guarantees to protect the right of all children to an education. The court has held that states must provide sufficient educational placements for children with special needs to include ASD.

In Ireland, it is government policy to provide for the inclusive education of children with special educational needs, including ASD, in mainstream school settings, unless such a placement would not be in the best interests of the child concerned, or the children with whom they are to be educated.

The Education (Admission to Schools) Act 2018 was signed on October 3, 2018, and contained four provisions. The fourth provision of this legislation came into effect on December 3, 2018, and provides the Minister for Education and Skills Joe McHugh with a power to compel a school to make additional provision for the education of children with special educational needs.

While the Minister was initially reluctant to invoke these powers, with his department issuing a press release on his behalf as recently as April 30, 2019, stating: "The power has yet to be invoked and I believe it should only be used as a measure of last resort", I was delighted when I recently heard that the Minister was willing to use his legislative powers to compel a number of schools, specifically in the west Dublin area, to open special classes to cater to pupils with disabilities.

As I write this, many of the schools are resisting his efforts, citing lack of resources, funding, etc. Unfortunately for Riley, who lives in north Dublin, it is too little, too late, and my son has certainly not benefitted.

I beg you, Minister, please use every last resort you can to help Riley and other beautiful, wonderful, individually perfect, little lost souls like him. More can be done. The time is now.

I went to a graduation from primary school earlier this summer for my eldest daughter, and I was very moved by the speech that the principal gave. She said something to the effect that every child should be educated to reach their potential and that they should all reach for the stars.

Riley, you will never come near to reaching your potential unless you get an education, and you will never be in a position to reach for the stars.

Right now, if I were to reach for the stars, I would watch you go through the gates of that very school on the first day of school in September, holding hands with your big sister and brother who are still pupils there.

I only wish that school had an ASD unit, which is essentially a unit within a mainstream school especially equipped for children with ASD. The intention is that children with ASD can and may be integrated with all of the other children as they progress, perhaps by starting with art or PE classes. In our particular area of Dublin, only a tiny proportion of mainstream schools have these ASD units, and every single one of them has said no to you.

September is quickly approaching. I hope and pray that very soon we will be putting on your little uniform and you will be going to school like all of the other children.

I can but dream.

I love you, my son, and until you learn to speak for yourself, I am your voice. It is not if you talk, but when you talk. I will make sure you are heard then, just like I am making sure you are heard now.

I just hope Ireland is listening.

Love, Daddy.

PS: If you want to do that rock-star thing full time, your old man will understand. Oh, and just a quick heads-up - if you are ever pulling a sickie to get out of going to school, you might get past me, but you will never get past your mum! Good luck, anyway!

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