"First you have to get over grieving for the normal child you thought you had, but don't".
Mireille and I heard these words on the night of the 26th of May, 1999, at a meeting hosted in Dun Laoire for parents whose children had recently been diagnosed as autistic. Our son Oisin had just turned 5, and been diagnosed as "on the spectrum". I can date it exactly because that night after the meeting I walked across the road to a pub to check the score in the Champions League final. It was into injury time, and Man Utd were losing 1-0 to Bayern Munich. I told Mireille United had lost unless they got a last second goal to bring it to extra time as we drove the short distance home. Ten minutes later I'm looking at my TV confused watching: there's no extra time, but United are somehow celebrating. Confusing to say the least.
I've often thought of those words in the 15 years since, and wondered if I ever did get over grieving for the normal son I never had. Like most fathers, I had high hopes for all my children, and probably projected a few thwarted dreams of my own onto him. Oisin was an enormous baby and toddler, and it was clear from the start he was going to be an enormous man as he was at the top of all juvenile growth charts. So as soon as he could walk I was throwing a rugby ball to him in the back yard, thinking that might be his game. They were very few indications of his autism in his first year. He cried a bit more than other kids, he didn't respond as well to the comforting touches of parents and siblings, and new experiences and noises seemed to alarm him more than they should. But it was all shrugged off as just a little different. It was only when his second birthday passed, and then his third, without him uttering a word that we started to wonder. Doctors were consulted, specialists were attended, and still no firm diagnosis.
He was eventually diagnosed by a psychologist in the Lucena Clinic as on the autistic spectrum. At the age of 4, he was enrolled in Benincasa, a wonderful school in Blackrock that catered for kids not just with autism but the full spectrum of disabilities. In the course of the next two years, our son who still hadn't said his first words and showed no indication of understanding or relating to the world around him at the start of the year was talking, reading and writing to the level of a normal 6 year old by the end of it. Suddenly all seemed well, and we could see Oisin leading a full rich adult life when the time came.
And then we moved. As the Celtic Tiger emboldened landlords to increase rents, ours tried to almost double the rent in one fell swoop. We decided it was time to buy a place ourselves, and bought the house we now live in. Oisin's rapid development in his first years at school perhaps made us complacent: we were soon to realize this was a near miraculous anomaly rather than a commonplace outcome. A similar school we identified nearby in Castleknock as perfect fell through when parents of the autistic kids intended for there objected to their kids being banded together with kids with other intellectual disabilities. We strongly disagreed with their position as our experience with Benincasa was that it was preferable to educate different types of kids together rather than narrowing the focus to just autism, but we were a minority opinion unable to sway the majority. Now, the State hummed and hawed for 18 months and didn't provide Oisin with a new school in our new area until forced to by lawsuit. In these 18 months, Oisin became depressed and regressed. The normal 6 year old was now an 8 year old with the speaking skills of a toddler. But we told ourselves all would be fine once he finally did start in school again.
But things were never fine again. Those years in his first school in Blackrock live in our memory as the last time we felt our son could grow to lead a normal adult life. Despite the best efforts of teachers and class assistants, and privately hired speech therapists, and his parents, Oisin simply never caught up. There were years when the teacher was great and he would improve, but there were years when the teacher was less than great and he regressed. As he grew in size and age, he became more and more frustrated with his lot, and more and more difficult to control. There were more and more calls for us to go talk to a headmaster and be told Oisin had hit someone or broken something. Informal cooling off periods at home became longer and longer. In his final year there the school seems to have just given up. While nominally still attending, he actually spent very little time there, and we were essentially told to keep him at home until an adult placement could be found for him. As the full fallout from the banking crisis spread through Government departments who were apparently told their only priority was to cut costs, the Government once again failed Oisin. They strung us along with no firm offers of adult placement or even respite facilities. They took advantage of knowing that we would never abandon our son no matter how violent or disruptive he became, even if that was the only way we could force them to take responsibility for him.
The past 6 years have seen Oisin regress deeper into his autism. He never settled in a secondary school that seemed to not know how to deal with him and his special needs. Cooped up in our house with just his parents to interact with, he became more and more scared of the world outside and unable to cope with it, and less willing to leave his room. Acutely conscious of the burden he was on us but unable to do anything about it, he buzzed and hummed and threw temper tantrums to try to drown out the world without and the turmoil within. These 6 years overlap with my poker career. So for most of those 6 years, I have sat in front of a computer screen clicking buttons trying myself to drown out the noise, leaving Mireille to deal with Oisin. When his screams of anguish got too loud for me to concentrate, I put on music. Only when he tipped over into violence or started breaking stuff was I forced to click the Sit Out button and leave my desk to physically restrain him. This got increasingly difficult as he grew to tower over me. On one occasion when I had to leave my computer screens only to see him punch Mireille in the head and wrestle her to the ground, I lost control and decided I was going to throttle him. Thankfully I quickly regained control, but sufficeth to say that Mireille's appeals to social services to do something for Oisin became more frantic, and I offered the unhelpful but heartfelt opinion that if this Hell wasn't ended soon, it would end with someone killing someone else.
The unspoken deal between myself and Mireille was she would deal with Oisin, while I went about the business of making enough money to cover our not inconsiderable expenses living and caring for him (and supporting our other two adult children). There's no doubt I got the better part of this deal. I just had to click the right button more often than the wrong ones: she had to deal with a deeply unhappy and increasingly desperate Oisin who was like a prisoner in our house, albeit a prisoner who didn't want to be anywhere else. When he was calm, he would never dream of leaving the house, but when his mental demons stirred he would try to run from the house screaming. Fearful that he would seriously hurt himself or someone else outside, we had to lock us all in, and face the full brunt of his rages. It was like having lightning in a bottle.
Mireille's every waking moment was consumed with fear of what he might do next, what might set off a tantrum. A prisoner in her own house unable even to accompany me on trips away. An abiding memory of these past 6 years is me sitting in a hotel room in Vegas, or Newcastle, or Barcelona, getting frantic texts from Mireille about what Oisin is doing now and saying she can't take it any more. Alone in a hotel room in Riga at an EMOP a few years ago, I thought I had reached that point myself and decided to end it all. Thankfully, I copped myself on as to what a hideous act of cowardice and selfishness my suicide would have been.
As the Government continue to display an inability to provide possible options (it seems they have a bigger problem with definitive commitments than your average teenage boy), we discovered ruefully that as in so many things in Dublin there's a geographical bias. All the best places are on the southside. But even had we been there and Oisin been eligible, a placement would have been difficult to come by as they are all crammed to capacity. Autism is a lifelong condition: you don't suddenly get better and free up a space. So the demand for facilities grows as more autistic children become autistic adults.
As strong as our desire to have the house to ourselves, it didn't tip over to dumping Oisin in the first hole that would have him. The first place that seemed possibly suitable (although we had doubts) fell through when they demanded more money from the state than they were willing to pay. As the burden of hassling the relevant authorities and visiting unsuitable places fell on Mireille, she became increasingly despairing of ever finding somewhere even half decent. Then finally a few months ago, a ray of hope. She was brought to a place in north County Dublin that seemed ideal. It was quiet (vital for Oisin who is driven frantic by a wide array of noises the rest of us find merely slightly annoying), intimate, had space, and the staff seemed very competent. The ray of hope grew stronger as they agreed to accept Oisin, subject to Government funding. As all the stops were pulled out to pressurize politicians with reminders of how bad a mass family suicide or bloodbath in their constituency would look come the next election, and social workers as to how bad it would look in their personnel file, everything finally aligned and the authorities caved. A date for Oisin's move was set (last Wednesday).
Mireille was told it was up to us (meaning her) to prepare Oisin for the move. She made the big decision simply not to tell him, and was not swayed when social workers, friends and family expressed horror at this course. I supported her decision, because she knows Oisin better than anyone. She knew that from the moment he was told to the moment he was dragged kicking and screaming from our house (and it would have taken that), it would be a living Hell for the three of us, and there was the distinct possibility Oisin might harm himself or one of us. So instead she stuck to a vague discourse of how the time for him to be an independent adult was coming.
On Wednesday, a heavily tranquillised Oisin left our house on a bus with two social workers, believing he was going on a routine visit to the park. But after the park, he was brought to his new home. As barbaric as this sounds, Mireille and I are convinced there was no other way. We didn't expect it to be easy. We knew it would be traumatic for Oisin. The mother of the guy he is now sharing with told Mireille it took her son three years to accept the new situation. We hoped it would not be so long for Oisin, but we felt it would be months before he accepted his new living arrangements, and we could visit him and try to repair our relationship with him after this apparent betrayal.
That night, Mireille phoned and was told Oisin was spending all his time in his room crying. We both sent him an email to try to explain the situation, and why we had done what we had done. Oisin responded to Mireille with a sad email asking her to come and bring him home, because this place "gave him the creeps". He followed that up the next morning with an angry email demanding she return his stuff which had been moved from our house to his new place, and never move his stuff again. Before she could even respond to that, he sent another email, reversing his previous position and asking for more of his stuff to be brought to him. When she did this, she came back saying Oisin seemed remarkably settled already. The following day she went with our oldest son Paddy to visit him. Paddy noted that while the place seemed great and Oisin seemed to be settling, there was sadness and perhaps resentment too that he had been moved here without warning. As Paddy put it succinctly, "Oisin is not smiling any more".
The following day (Saturday) Mireille drove me up there for the first time, holding his pet fish Blinky (name chosen by Oisin himself) in a jar on my lap. As we pulled up outside the gate of the community, Oisin saw me. He looked relieved and happy to see me again, and he waved and smiled briefly. He went to the office to get them to open the gate for us. He looked calmer than I have seen him in years. No distressed buzzing or humming or hand flapping. I had the closest thing I've had to a normal conversation in about ten years with him. He told me about the place and proudly showed me his room. I was stunned when he said "I don't have Internet yet but will soon" as at home in our place, even a 5 minute interruption would trigger a violent tantrum. He listened attentively to Mireille as she explained to him how to feed the fish. He wrote a detailed list of cables and DVDs he wants, and told Mireille to make sure the USB cable was for Windows 8. I was stunned to see him communicate his wants and needs so clearly. After a while, Mireille asked if we could go and he said yes. He said goodbye to me and added it was nice to see me again.
We drove home feeling pretty elated at how well he was coping and settling in. When I got home around 7 PM, I started regging for my normal nightly tournaments. By 11 I knew this was a mistake and was frantically unregging. I was sitting in front of my screens barely able to see them through the tears. Somehow as I thoughtlessly clicked buttons my earlier positive thoughts about Oisin had been shooed from my brain by creeping nagging negative ones. I had seen my 20 year old son have to get someone to open a gate to let us in to see him. No matter how many times I've wished him gone from the house these past few years, I can't imagine any father would ever enjoy seeing his son effectively institutionalized at such a young age. When I talked to my friend David Lappin on Skype about the place and sent him a link to the website, David concluded it's basically a bit like an old folk's home. That's not entirely true: it's not just a holding centre, Oisin will receive occupational therapy and other useful services there that hold the potential for him one day to lead an even more independent life, but there's no denying that in the sense of a bunch of similar people being looked after by staff it is somewhat similar. And as happy as I was to see Oisin settled, and to see the happiness and relief in his eyes at seeing me again, I'm not blind. I also saw the sadness, hurt and sense of betrayal Paddy saw in those eyes the day before. With all these thoughts running through my mind, accompanied by flashbacks to previous times both good and bad that raised questions over mistakes we made as parents, I found myself crying for the first time since....actually I can't remember the last time I cried. It was beaten into me at an early age that boys and men are not supposed to cry, so I was probably a small child the last time I did. Even when my first girlfriend who I loved deeply died and left me a nervous devastated wreck, I never actually cried. I know this because her friends remarked on it at the time. So this sudden outburst of tears was unexpected to say the least.
Mireille and I are not perfect parents. We did more or less the best we could, but we fall far short of perfect (me far more so than her: she's actually pretty damn close to perfect), and made many mistakes. With our other two kids, these mistakes seem to have been minor in consequence. Maybe our daughter Fiona would be more interested in athletics if I had been less of a pushy Dad in this regard, and maybe we went a little too far instilling sensitivity into our son Paddy. But Paddy and Fiona are two admirable adults so we can feel some measure of pride that at least we didn't fuck it all up. But with Oisin, or with any autistic child, the stakes are just so much higher. As I reflect on that year when Oisin was 6 and it seemed all would be well, I ask myself how big a mistake our decision to move rather than pay the jacked up rent in Dun Laoire was. Perhaps Oisin would have regressed anyway due to internal reasons (it is a hallmark of autism), or perhaps something else would have triggered him to but....perhaps not. Maybe he now lives behind a gate unable to cope with normal every day life because we decided to move. And maybe even though I now understand and accept that Oisin is autistic, I never got over grieving for the "normal" boy I thought he was for a few years. Maybe I never will, and maybe I will go to my grave cursing my own shortcomings as a father as the reason things turned out like they did for Oisin.
As we drove home on Saturday, Mireille remarked that nobody could ever understand what it's like to live with an autistic son (or daughter) unless they actually do it. If nothing else, I hope this blog at least gives a glimpse of what it is like. The last few years dealing with Oisin has been as close to Hell as any of us are willing to go. Closer in fact: but we put up with it on the basis that things could get better. I genuinely think they will. I think Oisin will be happy in his new home. I think the staff there will help him to the point where his life will be as fulfilling as it can be. But I also know I will never fully shake off the sadness we have all endured going through his first 20 years, and I remember the lines of a poem I first heard when I asked the smartest guy I know what his favourite poem was and he recited these lines:
"They fuck you up, your mum and dad.
They may not mean to, but they do.
They fill you with the faults they had
And add some extra, just for you.
But they were fucked up in their turn
By fools in old-style hats and coats,
Who half the time were soppy-stern
And half at one another’s throats.
Man hands on misery to man.
It deepens like a coastal shelf.
Get out as early as you can,
And don’t have any kids yourself."
(Philip Larkin ~ This Be The Verse)