Rising to a special challenge

Catherine Avila, who lives in Buncrana, in Co Donegal, has three children, two girls and a boy. Her only son, Eddie, is eight. Eddie has autism. This is  her family's story

My first expectation of the mainstream school in my community was that Eddie would be accepted as a student there. Fortunately for us, this was not a problem, but for some parents who struggle with special needs children it is a problem.

It is very important to us as a family that Eddie be "mainstreamed" into a school with his sisters. For my daughters' sake, it is important that their friends know about Eddie and are able to accept him. As a result of his attending a mainstream school, they are familiar with Eddie.

I accept that a mainstream placement is not always the right one for every child. We are thankful that Eddie is in a special class, in a standard school. Schools, boards of management, principals and teachers must be flexible and creative when it comes to placements for children with special needs. All it takes to make it work is the will to make it work.

From Eddie's point of view, it means he is able to go to school with his peers. He is given the opportunity to celebrate special events in a child's life at the same time, and along with his peers. Eddie recently made his First Confession and First Communion alongside his peers. It was a very emotional day for me, as I looked at these children. They were all the same age as Eddie. I realised his deficiency in communication and socialisation obstructed any hope of friendship with his classmates. But then, this is the way life is with a special-needs child. Eddie is accepted and known in his community as a result of attending the same school as his peers, and therefore their families are familiar with Eddie.

Now that Eddie has a placement in a mainstream school, I expect that the resources he requires to address his needs will be in place. For me this is a very simple matter. If Eddie needed glasses he would get them, if he needed a hearing aid he would get it, if he needed a wheelchair he would get it. Fortunately Eddie doesn't need these things. Unfortunately Eddie's needs are not easily seen at first glance.

Eddie has no sense of danger. He is incontinent and, left to his own devices, he will constantly run, with no thought as to what may happen. Just recently, he was found in a river, waist high in water. He was rescued by gardaí, but I had let go of his hand long enough to turn the key in the door - and he was gone, not for the first time and probably not for the last. I am not alone in this struggle. A child with autism has a variety of mental deficits that require constant supervision.

For any child with a disability, it seems that it has to be an ongoing battle to get the resources required. Eddie needs one-to-one supervision at all times. For his safety and the safety of others, he cannot be left without this. He requires constant supervision and needs to be given both verbal and visual prompts to be able to follow any instruction. After a lot of heartache, fighting and tears, Eddie was granted a one-to-one special-needs assistant.

Now, to our dismay, other children with needs just as great as Eddie's are joining his class without an assistant. In reality this means that nobody has one-to-one, although they all need it.

From my point of view, as Eddie's mother, this is a terrible situation to be put into. I am made to feel that Eddie has to compete with others in his class for the resources he needs to continue to make the gains that he has made in the last two years. I am made to feel resentful of children joining this class without an assistant and taking away from my son the resources he once had. And from this resentment also comes guilt. Guilt because I also realise that these other parents just want for their children what I want for Eddie: the best that I can get.

This is a very divisive situation and can only lead to frustration all round. All of these children should be entitled to a one-to-one special-needs assistant, because without one it is impossible for them to make any of the gains they are able to.

I am a member of a local parent group, Inishowen Children's Autism and Related Education, or ICARE. We are in touch with similar groups around the State. I do not understand why certain schools seem to be able to get one-to-one attention for their students while others cannot. If these schools can get the resources they need, why will the Department of Education and Science not give the same resources to mainstream schools or other special schools?

The system seems to be very unfair. Surely my son and those like him should be entitled to the same resources as other children, regardless of where they happen to live.

The message from the Department of Education and Science appears to be loud and clear. It will make knee-jerk reactions to parent pressure or those in a position to go to court. Thus you feel as though you need to go into battle all the time for what should be a given. It becomes tiring having to fight for every little gain.

I have recently been involved in drawing up Eddie's individual education plan. I am delighted to be able to be involved in this process and feel very much a partner in Eddie's education. Good communication with the school is extremely important for Eddie. Links between home and the school are vitally important for special-needs children, particularly when they are non-verbal - like Eddie - and when other agencies are involved, such as speech therapy and occupational therapy. I feel there is a huge need for a home-school liaison officer who could co-ordinate between the home, school and different agencies involved with children with special needs.

I would like to take this opportunity to thank everyone at Scoil Iosagáin in Buncrana, Co Donegal, for everything that they have done for Eddie. For teaching him how to match things, for teaching him a method to request items, for teaching him how to tolerate other children a little bit more and thus being somewhat sociable (a great difficulty for children with autism), for teaching him a little patience and to wait his turn. Without the help of those at Scoil Iosagáin, I would still have great difficulty taking Eddie to a restaurant or a shop. And, of course, for preparing him and giving him the opportunity to make his First Communion. With their help, Eddie is more readily accepted by the local community. For all of this, I am extremely grateful.

One teacher described my son as a lovely boy who happened to have autism. What a lovely way to put it. It is not often that people see Eddie as just a little boy first.

Of course his autism must be addressed, but at the end of the day he is just that - a little boy of eight, with a gap between his two front teeth and the most beautiful big brown eyes.

I want for Eddie exactly what I want for his two sisters - that he will be happy and be able to reach his full potential.

I see the frustration of his teacher and principal when they cannot get the resources they need to do the job they want to do and would be able to do. I know first hand the frustration for Eddie and the rest of our family when things are not running smoothly. It is a nightmare and extremely upsetting.

Is it too much to think that in 2003, the year of the disabled, when we in Ireland celebrated those with special needs at the Special Olympics, that people in Ireland with special needs should expect anything other than a fair deal?

Lastly, I would like to ask teachers never to underestimate the role they play in the lives of children. Even though we may not often say it, we parents do know how hard teachers work, the long hours put in outside the classroom and how committed teachers are. We have a shared goal in that we all want the best for the children. Teachers can and do make a huge difference to the children they teach. Often with limited resources.

Hopefully, if we all work together, we can make things better for everyone.