Ahead of today's protest by parents outside the North Eastern Health Board offices in Navan, Elaine Keogh hears about the lack of facilities from one family
Jack Farrelly is aged only seven but goes through two VCRs a year; left to his own devices he would continually watch, rewind and watch again any video featuring trains; when the new railway station opens in his home town of Kingscourt in Co Cavan he will definitely be its most frequent visitor.
His mother Jennie does not say that light-heartedly, because Jack is autistic and he is obsessed with the television.
Jennie will be one of some 100 parents who will protest outside today's meeting of the North Eastern Health Board at the lack of services for children like him.
He was diagnosed when three and it is three years since his last psychological review. It is two years since he received any speech or occupational therapy.
Jennie is not just angry at this but determined to fight until Jack gets all the services he needs to help him reach his potential.
"I will be like a dog with a bone and I am not going to let go. I know at times it will be stressful but I have to remain optimistic for his sake," she said in their bright sunny home last week.
As Jennie spoke, Jack was doing what he started to do at 17 months, when the signs of his autism first emerged: he watched a video over and over again.
At the time she thought he had gone deaf because "he became silent and was obsessed with videos and the television. He stopped playing with his toys and, as Jack is very visual, television is his life." However loudly Jennie called his name he did not respond, yet he would hear the rustling of a sheet of paper. After failed attempts to test his hearing, he was eventually referred to a psychologist and diagnosed as severely autistic.
"We were told that day that he would never lead a normal life. I cried all the way home; I didn't know what I could do for him. We were not given any information or leaflets and I spent hours in the library reading about autism and trying to educate myself."
Although he is attending a special school five days a week, it took Jack six months to settle into it. There are no family outings to restaurants or weekends away because Jack becomes stressed and anxious. His routine is vital to him.
"Without the other supports in place, his school has become his lifeline. He has as a result developed into a more loving child and we can hug and cuddle him now, he used to push us away."
Despite the progress he has made through the school - the Holy Family Special School in Cootehill - Jack only said his first word last year and still only has three words.
Shortly after Jack was diagnosed, Jennie and another mum founded the North Eastern Autism Support Group, which is organising today's protest.
"This being the Year of People with Disabilities makes a complete mockery of the present health board service. I cannot and will not allow my son to become a statistic for the continuous failings of the North Eastern Health Board."
She says there was no early intervention by the health board after Jack was diagnosed and, although an autistic team was set up in the Cavan/Monaghan area in 2000, it slowly lost its four members and they have not been replaced.
"The parents in the group are fed up, it is an uphill battle every day and I refuse to let the board shirk away from its responsibilities to my son."
In a statement, the health board said it was reviewing "the needs, resource requirements and management structures required to deliver a quality, equitable and people- centred autism service."
Jennie and a number of parents are considering legal action: "My son has rights, he cannot stand up and speak for himself, but I will."