A CORK mum of a child with autism says she won’t rest until her son gets the national school place he deserves and she won’t accept anything less.
Trish O’Neill’s son Conor was diagnosed with autism when he was two-and-a-half years old and while dealing with the shock at the life-changing news, she set about doing the very best she could for her boy.
That saw him attend the ASD Unit in Rathduff NS, the closest unit to where the family live in Donaghmore, and where he progressed to the Junior Infants class there.
But in another blow he was also recently diagnosed with a mild to moderate intellectual disability, after which Trish said his behaviour deteriorated at school and last December the placement ‘broke down’.
It was then decided Conor should be home tutored while he waited for a place in an appropriate special needs school.
It’s a decision she regrets accepting as she says her six-and-a-half-year-old son is now ‘heartbroken to be stuck at home’ and the waiting list for a place in a suitable school such as Cara Junior School in Mayfield is between two and three years. He’s already been on the list for that school since last April.
“What we have now is 20 hours of home tuition a week sanctioned by the Department of Education, but Conor is getting increasingly lonely and frustrated,” said Trish.
“He needs an education but it’s pointless teaching him like this as he needs to learn how to socially exist, how to take turns, how to be kind, how to develop life skills. As it is he’s just locked away in a bubble,” said Trish who is mum to two other children, aged three-and-a- half and two-and-a-half.
He used to hop up and down with excitement when he’d see his uniform and hop on to the school bus, she recalls: “It’s not fair all that has been taken away from him. He craves being around other children and needs to be taught in that environment.”
Trish, 38, has previously written in this newspaper about being a mother of a child with autism, describing his diagnosis as the day her world turned blue, and she doesn’t sugar coat the challenges it presents.
She had her son assessed privately, which led to her fears being confirmed, when he was around two, as he wasn’t speaking and was displaying some mannerisms consistent with autism.
Conor is non-verbal and struggles to communicate what he feels, which leads to frustration, anger and then outbursts. He can head butt, shout and scream and become aggressive out of pure anger, she says.
“He’s innately curious and would run towards water or into traffic so he’s a flight risk. We’ve just spent €4,000 on changing all the locks on our windows and doors in our house and have put in a big gate and fence as he recently ran out in front of a tractor.
“I remember he went missing in Mahon Point about a year ago, which was the worst feeling I’ve ever encountered and it was the longest 20 minutes of my life.
“He doesn’t do well with transition either and survives on routine so as a family that isolates us, which is a tough one.”
Since he finished going out to school last December his sleep has also deteriorated, and he suffered a particularly bad spell over Christmas, which Trish says nearly ‘broke’ herself and husband Eoin, who she describes as her ‘rock’.
“He just stopped sleeping literally. He’d be awake until 11.15pm and then would be up again at 12.30am and up again at 5.30am. I was working at the time and it nearly broke us.
“I’ve been through lack of sleep with newborns but it was worse than that, it was torture and it made me angry with everyone. It went on for three to four weeks and was horrendous but thankfully he’s come out of it.”
As a result of Conor losing his school place, Trish has had to take a leave of absence from her work in HR at Apple, who she praised for being so understanding and supportive.
However, there has been some much-needed good news for the family, who have just welcomed an assistance dog from the Irish Guide Dogs into their family.
Trish completed an intense week of training with Quelda, a Labrador golden retriever cross, and while Conor doesn’t usually show interest in dogs, his mum said he was immediately drawn to her.
The dog’s primary function will be to keep him safe and on their first meeting, she even stopped him bolting in front of traffic. They’re also known for their calming effects — something which Trish says she can also benefit from.
She admits the past few years have taken a toll on her mental health.
“I availed of a counsellor through work, which was helpful, but I do cry, I do get upset, but if I’m down Conor will feed off that. Anxiety is a thing for me and sleep — I’d be awake worrying about his future, worrying if I’m a good enough mother to my other children, a good wife. It can be hard not to get down.”
Sport, specifically karate, has been her saviour.
“I rely on karate and go twice a week to Bishopstown — for me it’s a place where there’s no autism, and no kids that are mine. I’ve been going there since I was 14. It gives me a chance to recuperate so I can continue the fight.”
Trish isn’t prepared to just sit and wait until Conor advances through the waiting list for his place in primary school and says she’ll do whatever it takes.
“I just can’t do that — he’s suffering. And if I do he could be eight when he starts school, which is crazy.
“Everyone knows that early intervention is crucial with autism. It’s like a third world when it comes to our education system.”
“I’m a taxpayer and the Department of Education have failed me, while a charity like the Irish Guide Dogs have delivered — that just makes no sense. It’s the people you least expect to help are the ones that support you.”