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A life less ordinary

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FAMILY TIESJohn and Edel Madden with their children, from left: Tom, Conor and Isabelle, at their home in Mount Temple, Co Westmeath. Pic: Ann Hennessy

Former Mayo goalkeeper John Madden, and his wife Edel, on the challenges of raising a child with autism

Edwin McGreal


Twenty-two years ago John Madden was in goal for the Mayo football team that came within a bounce of a ball of All-Ireland glory against Meath.
Life moves on and since then the Ballycastle native has settled in the midlands, working in Athlone as a Project Manager with Ericsson and living with his wife Edel and their three children in their beautiful home in Mount Temple, a tranquil village in the Westmeath countryside.
Being a parent brings its share of challenges, but they are particularly pronounced for John and Edel. Their youngest child, Conor, is six years old and is profoundly autistic.
Every day brings a fresh series of challenges. Some days go well, others do not.
On World Autism Day on April 2 last, John took to social media to post what he described as his ‘annual rant’.
It was heartfelt and very real. In 900 words he laid bare the realities of living with autism.
It’s worth repeating large parts of it.
“As you know, every person with autism is different. Everyone is affected in different ways. We only ever hear though about the high achievers (unless you follow various autism blogs) … the kid with an outrageous gift on the piano, the kid who was non-verbal at nine but now communicates perfectly, the beautiful girl from Killard School in Co Down with the angelic voice when singing Leonard Cohen’s Alleluia, etc.
“This of course is all great. I’m delighted for those kids – it inspires me and motivates me to work harder with my little man. But my little man and the others that make up 90 percent of the autism population are the silent majority. The silent majority for whom this – barring miracles – will never be their story.
“I can understand why the 90 percent are never part of the ‘feel good’ stories that people share and like. I mean what is to like about the day-to-day grind, the stress, the battles fought, the planning that is needed on a daily basis. What do I mean? Well my little man, six-year-old Conor. Non-verbal. Minimal comprehension of anything we say to him. ‘Feel good’ stories? Well, let’s see ...
“When he has a sudden and immediate sensory need and can’t find anything on the spot so bites into his hand, almost drawing blood.
“When we know that he recognizes the need to go to the toilet but doesn’t … ever ...
“When he wakes at 4am and decides that that’s it, slept enough. Every time of course myself or Edel will lie beside him and convince ourselves he will fall back asleep. And just as I am falling back asleep and think he is about to as well, and thinking all is well in the world, he will decide ‘enough, I want to get up’ and so will stick his teeth into me to basically tell me to get out of the way (and oh man but he can bite hard). Yes, a few hidden scars.
“Oh and as you settle him back down again, I can assure you that that desperate empty feeling you get when you consider where this is all going in the years ahead is certainly not a ‘feel good’ f***ing story.
“When he goes out in the back garden and jumps for Ireland on the trampoline (great) but take your eye off him for a minute and he is over to a pool of dirty water somewhere and trying to drink it.
“Stimming …. there is nothing ‘feel good’ about watching or listening to him with his guttural noises and infatuation with shadows. We know stimming is important as a regulatory mechanism for him but it can take over so completely and utterly for long periods of time that it completely takes him into his own world for that period. The frequency of it basically prevents us from bringing him anywhere bar immediate family celebrations. Restaurant, mass, kids football, etc, etc … forget about it.
“The guilt ... I hate the damn guilt. Go for a cycle on a Saturday … or spend the time 1:1 with Conor. Spend money on a new gadget or extra hours home tutoring etc.
“And his brother and sister having to deal with this too isn’t ‘feel good’ or fair. But damn it, they are brilliant. Absolutely brilliant!
“And his mother – the wonderful Edel Madden. Still not being able to go back to work six years after Conor was born wasn’t part of any plan. Having Conor full-on all this week for example – definitely not a ‘feel good’ story.
“Part of me hates sort of bursting the bubble of this whole Autism Awareness Day/Week/Month thing a little bit. But we’re one of the 90 percent and unfortunately we’re at the wrong end of that grouping, ie: we have many many hurdles to jump before we worry about acceptance and awareness in society. Part of me also cannot understand those parents who say of their profoundly autistic child: ‘I wouldn’t change him for the world’. Well I would of Conor. I would in a heartbeat. I’d sell my soul to the devil for Conor to be neurotypical.
“You know what though? We’re going to keep trying to jump those damn hurdles. Some of those hurdles actually feel higher than they were this time last year and sometimes we think we’re fooling ourselves thinking they will ever be achievable. An inch really is a f***ing mile. As with any parent in the situation, there is no option or alternative though. And while there is no destination, every hurdle jumped is a bonus.”
The replies and the comments were plentiful. Far less worthy things have went viral. For most people who read it, reflected in the comments, the post provided true insight. On Autism Awareness Day, John Madden greatly raised awareness of the condition.
 
The need for change
June in Mount Temple and John Madden answers the door. He is as trim and athletic as in his Mayo days and still returning home to play for Ballycastle’s second team. He talks openly and honestly about the challenges from when Conor was first diagnosed at two years and three months old right through to the current day.
Later on, Edel Madden arrives home and shortly after that the main man, Conor, is dropped off by bus and comes flying into the kitchen where we are, like a human tornado.
He’s a gorgeous young boy and physically looks like a healthy six year old. It is only when he tries to communicate that you see him struggle.
In our short time there you can see how it can be a challenge for his parents, but you also see the love they have for him and the patience in dealing with constant challenges.
This, John tells us, is a good time of the year. The heatwave Ireland is in the midst of is a particular blessing in the Madden home. Conor is a bundle of energy and being able to be out the back playing all evening means that these nights he is sleeping ten hours a night. Everyone is better able to deal with the challenges when they are well rested and not woken at 4am.
John even allows his mind to wander to ‘what ifs’ as we comment on Conor’s agility.
“He’s incredibly agile, his fitness and energy levels are very good. You can’t help but sort of wonder ‘Jesus if he was neurotypical where would he be in terms of playing football or whatever’? That’s only more of a curiosity thing than a thing I’d stress about. Anyone who stresses over those sort of things, you’d almost be jealous of them, that they don’t have too many worries,” he admits.
Two things the Maddens feel can actually change though is society’s attitude and the type of State support available.
John and Edel both say Ireland has improved but still has a way to go. Language is one part of it.
“We’re still a nation that commonly uses phrases like ‘slow’ and ‘simple’ and ‘weird’ in a dismissive way about people.
“Maybe these people are just different. Neurologically, they are just a little bit different. What makes ‘different’ any better or any worse? Who is the person to judge that? Conor is neurologically wired a little bit different to the rest of us but we’re all wired a bit different to each other. He is just wired a little bit more differently to most other people.
“I think we’re all guilty of getting frustrated with someone in some scenario or setting because they are little bit different to the norm. We don’t think of the incident or the person in a passive or compassionate or empathetical manner, we consider it that ‘he’s a nuisance to me’,” said John.
“You find it more with adults than children actually. Kids in Conor’s school are great with him and their levels of empathy and awareness increase greatly because they are so familiar with seeing kids with ASD and know there is nothing to be afraid of,” said Edel.
Edel says their two older children, Isabelle (10) and Tom (8) have developed much greater emotional intelligence as a result, but she recalls Tom asking about the future when John and Edel are no longer around.
“Kids are perceptive. They are too young to have to think like that. They’re exposed to more reality at a young age. You’d prefer if that wasn’t the case,” said Edel.

Smart spend
The Maddens are far from critical of the level of investment from the State, saying the total spend is quite high but its direction is another story.
“It is not being spent smartly. The Government spend a lot on schooling but then the child doesn’t get enough speech therapy or occupational therapy.
“We’re lucky that we can pay privately for a really good tutor to come into the house every week but you have to make sacrifices for that. We’re not going on a family holiday this year because the right thing to do is to keep that resource going on a constant basis,” said John.
Both are hopeful that Senator James Reilly’s ASD bill, if implemented, will represent a significant improvement. It calls for a Government strategy to address the needs on an individual basis, from childhood to adulthood.
John and Edel have learned a lot on their journey with Conor. They initially poured themselves into everything they could, looking for progress before a realisation came.
“I remember two or three years ago we had a tutor here and Conor responded to a visual of a cookie and repeated it. He pronounced it pretty well, and still does. I thought ‘this is it, this is the trigger’ and was going to really develop his language skills.
“It felt like we were after winning the Euro Millions but there was a gradual realisation over the weeks and months that followed that actually the Euro Millions is being pulled away bit by bit because the language never came and we are back to a near bankrupt state. “You have to learn to take it day by day and not set unrealistic goals and expectations.
“Up until a year ago I was completely obsessed by doing everything I could and was completely consumed by it. I realised you need to step back and you have to leave him to his own devices, to a point. Yes, we will lead him and guide him but we’re not going to get completely obsessed about it because that’s not helping him, that’s not helping us.
“When you are on an airline and they give the safety demonstration and say to put your own oxygen mask on first before you worry about your kids. It’s like that. You have to be able to breathe yourself if you are to be able to help your child.”
They are grateful for the family support they receive and single out John’s mother Ann in particular for her willingness to ‘come up at the drop of a hat to help’. They feel there’s a lesson to be learned there too.
“Having talked to other parents, sometimes people are not sure how they can help, be it family or friends. If you know someone and haven’t been sure how you might be able to help, offer and see what happens.
“It might be a case of one weekend a year taking that child and giving the family a weekend off. There will be people who don’t want the burden on others, but there will be people damn glad of the offer too.”
Because there can be no doubt about it, the day to day takes its toll. But it is a journey the Maddens are on together, with their families and friends. Ní neart go cur le chéile.