Anne Dempsey hears how Enable Ireland supports and cares for those with special needs
Seven years ago in the 35th week of pregnancy, Kinta and Peter Oakes, Bray, Co Wicklow, found out their child had had a bleed in the brain, suffering the equivalent of a stroke in the womb.
"When Art was born, we were told he could be physically or mentally disabled. I had a vision of someone sitting dribbling in a wheelchair but could not relate it to this absolutely beautiful looking baby. When we finally brought him home, we didn't know who we were any more, or where we were going," says Kinta.
An MRI scan at eight weeks was no more enlightening. "I had pains in my chest from pure stress. It was explained to us that we were going through a bereavement, grieving the child we thought we were going to have. This grieving process goes on a long time."
Gradually, Art's symptoms became more obvious. The brain damage had affected his eyesight, both limiting vision and inhibiting ability to filter out non-essential images causing feelings of fear in new situations.
He suffers from epilepsy and struggles with audio-processing, so that while hearing is normal, Art has difficulty in retrieving and processing content. This means constant repetition, patient ongoing explanations which can still pass him by, again leading to confusion and frustration.
Peter is an architect, Kinta, a designer in children's clothing. Their eldest child, Louis, was two when Art was born, and they've since had a daughter, Alana. Kinta is Australian, and coping with Art was exacerbated by feelings of isolation and helplessness many thousands miles away from family.
At five months, she noticed the baby's right hand was stiffening and shortening, disappearing up his sleeve. By lucky coincidence, Peter was designing a new building for Enable Ireland (formerly Cerebral Palsy Ireland) at the time and, suspecting cerebral palsy, they made a physiotherapist appointment. In terms of support, they have never looked back.
"It was as if I had been drowning and someone threw me a lifeline. The stroke had affected his left hemisphere, impairing his body's right side. I rolled up my sleeves, got to work under their guidance, doing 72 stretching exercises a day with Art and saying goodbye to my business."
A programme of speech and occupational therapy was also devised, while a psychologist supported the whole family.
"As far as Louis was concerned, we kept disappearing off with this baby to hospital. Peter's mother came out to mind Louis a lot, and I can still see him standing at the window waving goodbye to us - again! Enable helped us become aware of Louis's needs and to explain what was going on."
Over the next few years, they worked with Enable therapists who corrected Art's posture, worked out a physiotherapy plan, and provided a comprehensive home approach. It is thanks to this systematic intensive intervention, Kinta believes, that Art walks today. Enable play therapists visited each week, then found Art a pre-school while providing ongoing support to his pre-school teacher. The next big hurdle was big school.
"Art's IQ makes him suitable for mainstream education. We want him to grow up and fit in the real world. We have been told he will be capable of having a normal life - with support - and we want to give him that life."
So two years ago, Art started in Junior Infants at St Andrew's National School, Bray, Co Wicklow.
Before his first day at school, Enable speech therapist Nancy Harrington, occupational therapist Stephen Oakes and psychologist Joan Curran had liaised intensively with the school principal and relevant teachers, explaining Art's needs, while the school had fought for and won a special needs assistant for Art, as well as learning how to deal with an epileptic episode.
"His first year in school was a rollercoaster. He had tantrums, disobeyed the teacher, struggled to cope in the new situation. Enable were, and are, our buffer, and the Enable team, the school, and Peter and I meet three times a year to discuss ongoing needs. I'm shortly beginning a course with them in assistive technology which will help Art to read.
"Art is very affectionate, he comes up and asks for a hug. He can also have extremely challenging behaviour, screaming, throwing things and calling me all the names under the sun.
"Going out with him is fire-fighting and people look at you disapprovingly. I explain that he has special needs but many don't understand. Australians are open and talk about things. I need to talk about Art. But this can be hard, as the Irish way can be to get on with things without acknowledging what's going on.
"As a parent of a special needs child, you become so involved with the organisation that they almost become your family.
"Enable has seen me through tearful times, elated times, they are the only people to say 'well done'.
"If you imagine being in a dark room not knowing where to go, and then finding a light, that's what Enable means to me. I can ask them anything I want - vital in a constantly changing situation.
"One of them recently described Art's life as like 'walking on bumpy ground while wearing fogged up glasses'. They are professional, they are committed and they care."
Through 14 regional branches, Enable Ireland looks after the physical, educational and social development of 3,000 children and adults with special needs.
Its Action Week on Disability, launched yesterday, to raise awareness and to fundraise through the sale of yellow button badges, runs until September 26th.