Margaret Lennon still feels a stab of fear when she remembers first realising autism was taking over her son's life.
"I'll never forget it. My older son, who was 10 at the time, came up to me and said, 'Adam doesn't play with me anymore and he's stopped talking'. I knew then. I was afraid to say the word 'autism'. The only things I knew then were pretty horrific. My understanding then was that his future was in an institution, and that my children would have no real life at home," the Kilkenny mother-of-three said.
Adam was around 15 months old at the time. He appeared to be making normal progress. Rapidly, however, he began to regress, losing his speech, throwing uncontrollable temper tantrums and even beating his head off the ground in frustration.
Now, on the verge of his fifth birthday, things have changed dramatically for the boy.
He has regained his speech, he is starting to read and write and he has lost his self-injurious behaviour. She put his progress down to a highly intensive and structured form of education known as Applied Behaviour Analysis (ABA), which has produced dramatic results among autistic children.
When Margaret first looked to health authorities for help she found little, she said. There was a waiting list of up to a year for a psychological assessment. In the meantime there was nothing to address his rapidly deteriorating condition.
Instead she and her husband, Michael, paid privately for an assessment. With few of the recommended therapies available, she did a course on ABA and set up a home tuition programme for Adam with trained professionals.
"We had a detailed assessment across all areas of development and targeted things like self injurious behaviour and communication skills. Very quickly, within two weeks, we began to see changes," he said.
It cost the Lennons €85,000 to provide home education. To pay for it they re-mortgaged the house and used up savings set aside for their older son's college education.
The home programme, now run by a group called Saplings, has since expanded to cater for six children in the Kilkenny area. A pilot project is due to be established shortly which will provide an ABA approach to education for at least 12 autistic children in the area.
Adam is now almost ready to attend a mainstream primary school. His mother says he will need a tutor from Saplings, trained in ABA, to ensure he continues to make progress. The Department of Education, she said, has not agreed to this and has offered a special needs assistant.
That is her next battle, she said. But she has no regrets over the sacrifices the family has made to provide education for Adam.
"He's starting to read and write now, we could take him anywhere with us. They are like miraculous advancements. He saw Santy this year, he was trying to write a letter to him. He's making up games with his sister. We don't take any of it for granted."
