By Elizabeth Doherty
A MOTHER has told how she “dreams” of the day her autistic son will could go to university – in the hope of making Ireland a more equal country where children are treated fairly.
Fiona O’Flaherty, 44, from Tuam in Co Galway, is the epitome of a loving, Irish mother. She describes her son, Danny, 9, as a “mammy’s boy, with beautiful, big blue eyes.”
She dotes on her auburn-haired boy and loves him even when his condition makes him difficult to manage.
From the moment he was diagnosed with autism at 22 months – she knew she would have to “fight” more for Danny, than her daughter, 11.
Danny, would not, Fiona, admits be able to “dream as easily as his sister,” who is in mainstream school and is convinced she can conquer the world.
But for what Danny can’t envisage, Fiona is dreaming for him – as she points out “there is a division in Irish society and I want to change that.”
My hope, my dream for my son is that he could further himself. That he could go to university, just like his sister, when he leaves school.
“Right now, in Ireland, when an autistic child goes through the education system, at 18, they are just left there – there is nothing more, no education – nothing. And that isn’t right.
“In an ideal world, where we could have fairness and equality, my son should have just as much right as any child to go to university – but right now, that just isn’t the case.
It should be a human right to access third level education but the fact that university doesn’t seem to be an option for my son, shows we do not have equal rights for people with autism in this country.
“If we did, if my son and other children with autism, could look to a future where they could go on to study with their peers, then we would have a better society. It would change society’s perspective of people with autism.
“It would give the child hope that they too could do, and it would give their families hope for them to dream for their child, just as all parents should for every child.”
Fiona accepts that there would need to be teachers and a teaching method suitable for autistic people to be applied, to enable young people on the spectrum to attend university, but she does not see this as an impossibility.
She believes “People would actually pay in their taxes to see this happen,” and blames successive governments for not having a more compassionate and welcoming approach to those with intellectual disabilities.
For parents who do not have a child with autism, the very fact that third level isn’t usually even an option, would be something most had not even considered.
People who don’t have an autistic child, don’t even contemplate this inequality.
“It just doesn’t cross their mind,” Fiona said.
But having a child on the spectrum hadn’t crossed Fiona’s mind either until she was watching an episode of Oprah on TV when Danny was a baby.
On the show a mother was telling a doctor how her child was non-reactive and coincidentally some of the child’s behaviour echoed that of Danny’s.
“Danny wasn’t making milestones,” Fiona said. “I listened to the doctor on the show and I realised Danny was similar to what she was describing.
“I took him to the GP and then a specialist and he was diagnosed. ”
After diagnosis Fiona and Michael went through a transition period, worrying for their son’s future, but they set about researching how best they could look after his needs and provide him with the best chance.
“I started researching the condition. I read books and studied up on autism. I really feel you have to work to find out as much as you can for your child and I know education is key to helping autistic children learn how to communicate and fit in,” Fiona said.
The couple could not find a school to fit their son’s needs in their own community, so he attends the Abalta School for Children with Autism and Complex Needs half an hour away in Galway.
The facility is one of a group of schools currently recognised by the Department of Education and Skills, as a school established to educate those with autism and complex needs.
It has grown from its 2001 parent-led establishment, as a centre for children with autism, to its current status as a special school that offers a range of “child-centred, evidence based educational programmes, strongly focused on helping children with autism reach their individual potential.”
All children have a “very comprehensive Individualised educational plan which encompasses the National Curriculum, as well as individual, behavioural, communication and independence goals.”
As the mother to an autistic child, Fiona admits sometimes she feels “despair,” but when she looks in to her son’s eyes, her “heart melts,” and her mood can quickly turn to elation.
To her, Danny is simply everything – and that is clear in how she talks of him.
He is a very handsome boy. With his big blue eyes, a big head of auburn hair and gorgeous alabaster skin.
“He is also very sociable and he is always in the middle of a group of kids.
“My son can fixate his eyes on you and smile and you won’t want to go anywhere. He draws you in.
“And he loves his bike. It is one of his favourite things.”
But, naturally there are times when the condition is difficult to manage.
“As a parent of an autistic child, you can really struggle sometimes,” she said.
“But the more you feel despair, you are seeping in to a dark place and your child picks up on that, when they need you.
“You’re struggling and you are trying to teach your child – it’s a very difficult place, I know it is .
“But you can never give up on hope – hope that things will get better, that your child will have a chance. That you can change things.”
Right now in Ireland one in 100 people have autism. This is a lifelong neuro-developmental disability that affects the development of the brain.
People with autism have difficulties in communicating, forming relationships, developing language and understanding abstract concepts.
The condition impacts their ability to understand the world round them.
Yet despite all these matters affecting autistic children, Fiona and Micheal say it is like a “postcode lottery” what services will be made available to a child.
Even accessing speech therapy, a vital service, is extremely difficult, they say.
If we want speech therapy, we have to pay for it. For many people, it depends on the area they live. If there is less demand, there will be more access to services, but less access if there’s high demand.
“It’s like a postcode lottery,” said Micheal.
The couple do not feel life should be this way for children with autism or for their families.
They say those with intellectual disabilities are already being treated differently from the time they are born due to the lack of access to essential services that benefit their progression.
“If the Government was creative, instead of cutting medial cards, which they did a couple of years ago, from children with special needs – they would give these children a chance, a goal, a future as part of society,” said Fiona.
“My daughter can hope and she has dreams. She tells me about the things she wants to do, to achieve and I believe she can do it,” the mother said.
“Everything says in this society she can achieve if she works for it.
“But the saddest thing is that currently I cannot hope for her brother to have the same chances – because once autistic young people turn 18, they are out of education.
“And after that they have nothing unless there is a training centre to attend.
“They don’t have university to think about, to aim for – to be part of society.
“It makes me angry. It’s not progressive, not goal orientated.”
The mother talks about having seen one autistic child who had no educational “interventions” and it suddenly becomes clear how “dark” a world we could potentially live in, if these services were cut even further.
“This child was walking round in his own world. It was so sad to see,” she said.
“Danny needs a consistent, regular, mundane programme of education. It’s very repetitive, but children that have this education excel and as they become older they have a base line education.
But autistic children are not equal in society. They have no way to avail or apply or hope of any third level of education.
“They may be good at maths, but are not entitled to further their education. There’s no provision once they leave school.”
But no matter what, Fiona and Micheal O’Flaherty are not giving up.
“Enda Kenny has picked on vulnerable people during his term, cutting services like speech therapy and medical cards,” Fiona said.
“Ideas in this Government are not fostered or encouraged and I am sure some must have creative ideas to improve matters for children with special needs,” she added.
“Then we look at someone like Tom Clonan,” Micheal said.
“A man who is speaking up for equality for the disabled and we see such a huge contrast. We need political leaders like Tom.”
Dr Tom Clonan spoke earlier this week to Ireland Today about standing for the Seanad to rally for disabled rights, as he is also a carer for his son, Eoghan, and sees huge inequalities in society.
Tom will find out on Friday if he has been successful in his attempt to become a senator as the by-election results will be announced then.
But despite the result he has committed to continuing to campaign for disability rights.
Like Tom, the O’Flaherty’s believe things can change and it seems they are the type of people to push for that change.
“I won’t give up on my son,” said Fiona. “I am stubborn and I am a fighter. I will never give up hope and I will never stop having my dream for him – that he will go to university one day, just like his sister, just like his peers.
“Things can change for the better – it just takes will.”