7 April 2005 Edition
Coping with a special needs child - one family's story
BY JOANNE CORCORAN
It's almost a month now since the issue of children with special needs was thrown into the spotlight, after the five O'Hara children from Kells, four of whom have autism, were taken away from their family and put into care by social services. The children's parents had gone to the media with their heartbreaking story of trying to raise the children without state support and resources and spoke of how they were finding it hard to cope. After immense public pressure and several court hearings, the children were returned to their family.
A couple of weeks later, the Mohan family came forward to tell how their 12-year-old foster son, whom they had raised since he was a baby, had been taken from school by social services last December. They had rang up the North Eastern Health Board to say they needed more help, but had never expected that their son would not be coming home from school that Friday.
Both stories affected the public deeply, but ironically, many families who are suffering because of the absence of state structures to cope with children with special needs are now afraid to speak out about their pain, having witnessed the ordeals the O'Hara and Mohan families were put through.
This week, Jenny Farrelly from Cavan, a co-founder of the North Eastern Autism Support Group, agreed to talk to An Phoblacht about the difficulties involved in raising a child with special needs in a state which has long neglected this area of care.
"You don't get your hopes up"
"Jack is my youngest son. He was diagnosed with autism when he was three, back in 1998. We found out straight away that there were no services to help him or us cope. When we left the psychologist's office we didn't know where to turn, we didn't know how this would impact on our lives.
I went to the library to find out about autism. I was going through a kind of grieving process, but I had to snap out of it quickly, because the rest of the family would have suffered.
I educated myself and then, through word of mouth, I started to hear about other families who had autistic children. In a short time I met up with three families. Our children had all been diagnosed within a short time of each other and we knew we couldn't be the only parents dealing with this.
We'd all had the same experiences before we met. If you put autism into the internet, it tells you the standard characteristics, but nothing else. I rang up the Irish Society for Autism in Dublin but I found the information I got to be just factual. There was no advice, no hope given. Soon we had nine families in Cavan and Monaghan and we decided that we'd form a support group. We gave our story to local newspapers and people started to contact us from all over the northeast. So we became the North Eastern Autism Support Group and were registered as a charity.
We decided to ask parents what they wanted from us. We found out that we all needed information on education, teaching, and help at home. We fundraised enough to bring over experts from America to train us in TEACCH, a method of teaching autistic children. The Department of Education has since adopted that method.
Our group has been going from strength to strength. A few weeks ago we held a workshop in Mullingar and it was attended by parents and teachers interested in getting information and support.
I know now that Jack should have received early intervention and behavioural management therapy. Jack's autism is non-verbal and because of his inability to communicate his needs he was really frustrated. He would scream and cry and hit himself and us. It was a really upsetting time.
We had a nine-year-old as well, and when you have other children you have to explain to them that their brother or sister will never be like them. As a family we can't go to McDonalds or the pictures, because Jack doesn't like noise or crowds and he's resistant to change. We're lucky that our eldest is very protective of him and it's never been a problem, but he has missed out on so much.
It's heartbreaking, but you hear some parents say that they would prefer if their child had an obvious disability because there are more structures in place for physical handicaps and also, you can see that that child has an impairment. Autistic children look fine, and yet their behaviour can be so extreme and shocking.
I think that the government needs to do a lot more for children with special needs, especially in terms of research. For example, there are a lot of parents out there who have concerns that the MMR shots may cause autism. I don't believe they do, and if I had another child I wouldn't hesitate to get them, because vaccination is important. I think the government needs to research the genetic side of autism, which is completely neglected.
There really isn't enough being done at the moment. When you mix with children with autism you see that they have specific needs. They like being on their own, for instance. But if you're lucky enough to have access to respite care, you see that most of these places are completely unsuitable for autistic children. They're open plan and have no structure. They aren't designed to meet specific needs.
For instance, Jack will only eat toast, chips, fried rice and curry sauce, crisps and Petit Filous yoghurts. He won't eat anything else. Imagine a respite centre having to cope with this sort of individual demands.
Our group has lobbied extensively to get more funding for the educational side of things, like speech and occupational therapy and dietary experts. Jack went without speech therapy for three years. In fact, he had no help at all until he went to school, that's been his lifeline.
We're lucky he's in a special school. It means he can stay until he's 18. In a lot of cases, special needs classes are aligned with mainstream schools and when the children reach 12, the parents have to find a secondary school that can continue on with this. That transition period is really difficult because there aren't many schools that can.
In recent years, the health board has set up a team to deal with children with disabilities, but our concern is that their remit is too broad. They will take all children between the ages of six and 18, whatever their disability, and with those numbers, how can we expect a proper service?
A lot of people ask me how I cope. The answer is, you just do. You've no choice. We love Jack so much. We wouldn't swap him for the world and our lives revolve around him. We do the best we can, but we're realistic in our expectations. We hope he can learn life-skills though school, but we don't expect much else, because he's not academic.
When it comes to the state providing more, you just don't get your hopes up.
There are individuals who do so much. I can't thank Caoimhghín Ó Caoláin enough. He is the only man who has ever done anything for us. He came to Jack's school on a tour (we're trying to get money for an extension and repairs) and he met the children and talked to the parents and he and his colleagues put forward a Bill on special needs in the Dáil recently.
But in the end, it's the government that needs to do more."
• Parents of autistic children, or people who wish to fundraise for or donate to the North Eastern Autism Support Group, can contact Jenny on 042 9668167/0876749980
• Information on autism can also be obtained from the Irish Society for Autism's website: www.iol.ie/~dary/isa, or the PAPA Resource Centre website: www.ulst.ac.uk/PAPA