'He's been robbed of his potential'

The O'Carolans have been battling for almost three years for an education for their son, writes Carl O'Brien.

The O'Carolans have been battling for almost three years for an education for their son, writes Carl O'Brien.

It took almost three years of fighting to secure what was eventually distilled to just four simple paragraphs.

"I don't know what the mystery was all about," says Lewis O'Carolan's mother, Annette, reading through yesterday's ruling. "The simplicity of what he needs is laid out here. Instead, he's been robbed of time and his potential. We've been made to feel like criminals because we're looking for an education service and dignified quality of life for him."

Yesterday a new set of proposals for the education of autistic boy Lewis O'Carolan were agreed by the High Court and the State agreed to pay damages of €120,000 to compensate for the breach of his right to education and care to date.

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"It's the first concrete acknowledgment of a specific service that's required for Lewis," says Annette."This is also a sign of hope for other parents who are worn down by the system or don't have the heart to fight. Many are afraid to challenge it because they fear what they have will be taken away."

Lewis, who is autistic and has severe behavioural problems, is due to turn 16 soon and has been out of school since the age of 12.

The O'Carolans' terraced house in Phibsboro on Dublin's northside, where he has spent the last number of years, shows all the signs of his troubled behaviour.

The doors have been ripped from their hinges, there are gaping holes in some of the walls and much of the crockery has been destroyed.

"We buy paper or plastic cups in Tesco," says Colm O'Carolan. "You divorce yourself from the broken world around you. The fundamentals of normality are gone. . . It changes you. You become mouthy. I was a quiet, shy chap before. That's all changed."

For parents of autistic children, Lewis's story encapsulates the poor planning and crisis management that has characterised much of the State's approach to autism education.

Demand among parents of autistic children for appropriate education services has grown in recent years due to increasing awareness that, with early intervention, many children can be rescued from the worst effects of the condition.

As a toddler, Lewis was bright, curious and talkative. Then, one by one, his skills began to disappear. He became more withdrawn. He stopped making eye contact, stopped smiling, and lost his speech.

Autism began to rob Lewis of his most basic skills, to the point where he had difficulty deciphering the world around him.

It took several years to get a diagnosis for him, says Annette, while the special school he attended did not have staff qualified to provide autism-specific tuition. After his behaviour continued to deteriorate there, his parents took him home at the age of 12.

"His behaviour didn't get bad overnight," says Colm. "It developed because there was no proper intervention which met his needs."

Following two years of legal wrangling over his right to appropriate education, the High Court ruled that plans put forward by the State were "objectively adequate" and "constitutionally appropriate".

The O'Carolans rejected the plans, which they said were linked to a psychiatric facility, and opted to send their son to a centre in Wales which specialises in dealing with autism and challenging behaviour.

This placement, however, was suspended after a few days due partly to the number of female professionals working with him, say his parents. Lewis becomes acutely distressed among strangers, especially women, since his first experience of the education system.

Following yesterday's ruling, they are waiting to see how much of Lewis's potential can be rescued once he begins to receive appropriate education and therapy.

"The professionals tell us he has highly developed visual skills, but he processes things so quickly that his mind becomes dammed with stimulus," says Annette.

"His behaviour is linked to this, it's a form of communication. He can recover, but we don't know to what extent."

Their battle isn't over yet, adds Colm, who says the State's attitude to parents and children with learning disabilities needs to change.

"The State's treatment of Lewis wasn't a personal thing," he says. "They just have set policies to keep things as they are and to keep the system as it is. Lewis is just one boy whose story has been told - there are many others out there."