Kathleen Freeman has waited years to get a diagnosis for her son's learning difficulties, so he can get the help he needs, writes Kathy Sheridan
Kathleen Freeman's file on her son Jack is thick, methodical and up-to-the-minute. The professional assessments, reports and appointment letters from health and education bodies suggest a co-ordinated drive by the State to resolve Jack's learning difficulties.
It also includes her personal notes, résumés of phone conversations and her own periodic assessments of Jack's development. The language is strong, unemotional and courageous, her observations spelt out in a manner that no mother wants to see applied to her five-and-a-half-year-old child, let alone by herself.
To any impartial reader, there is an Alice-in-Wonderland quality about this assembly of documents. It is clear that Jack is a child crying out for a definitive diagnosis - a diagnosis that is hinted at repeatedly, but that, bafflingly, no one feels able to give.
No fewer than three different professionals, orally and/or in writing, have linked his condition to dyspraxia, a learning disability caused by a breakdown in communications between the senses and the brain. Two, including a psychologist from the National Educational Psychological Service (NEPS), have stated in writing that Jack needs one-to-one help in the classroom.
But Department of Education rules insist that he needs that definitive diagnosis. Without it, he will be deprived of the one-to-one classroom and playground help he is deemed to need by competent professionals.
To get such a diagnosis, Jack must see an occupational therapist (OT). His mother has been told this could take two and a half years.
In the Wexford area, home to the Freemans, there is a more than 1,000-strong waiting list and even the terminally ill have a waiting list of six weeks to see an OT, according to Con Pierce, general manager of Community Services in Wexford.
At the end of 2005, the waiting list for the two specialist paediatric OTs was 340. A third specialist was appointed this year, Pierce says, "but I would imagine that the figure hasn't changed substantially". In any event, none of the three is in a position to do in-school assessments. While optimistic that resources must increase in line with the introduction of the Disability and Special Needs Acts next year, Con Pierce agrees that a child could "quite possibly be facing a wait of two years".
By then, Jack will be eight, six years on from the time his mother first expressed concerns about his development.
Not surprisingly, Kathleen Freeman's every word is weighted with the sense that each passing moment represents the squandering of a precious opportunity to salvage Jack's childhood, his education, perhaps even his life.
Martina Gately, the learning support teacher at Oylegate National School and stalwart advocate for Jack ("you'd be very very fond of him") and children like him, describes how Jack will still be rooting around for the book, his senses unable to synchronise with his brain, long after the class has read and moved on. After her visit, the NEPS psychologist noted that "if the teacher had constantly tried to keep Jack on task . . . this would have taken up much time and effort on the teacher's part" and that Jack will "require considerable support to progress to the next stages of literacy and numeracy".
His poignant isolation in the playground is a direct result of his condition, the fidgety inability to concentrate or sit still, the desire to join others' games inevitably wrecked when Jack thunders into a little group, bringing chaos and further isolation.
"Children with dyspraxia have no idea of social boundaries. They're in your face," says Martina Gately. "In the yard, Jack is becoming more frustrated. He sees that they won't play with him. He just doesn't understand why they won't. He gets tired easily because he has to concentrate so much on what he's doing. It's awful."
ADVISED TO GET him socially engaged and involved in sports, his parents paid for private swimming lessons among other things. "That was because we didn't want to see him getting totally rejected again. But he was lost again. I'd see him on the hurling field and he'd be standing in the middle of the field, dragging the hurley up and down behind him. Other kids would be running the ball through, around and behind him, and their parents would be watching and laughing. And you're there praying that some day, the penny will drop."
For Kathleen and Jimmy Freeman - the self-effacing backbone of community life in the village of Oylegate living modestly, rearing five children under eight (Jack is one of triplets), working 14-hour days to build up their shop and post office business - going public was not an easy option. They have already lost a child. In 1999, Rebecca, their first-born, was killed with her 19-year-old aunt (Kathleen's sister), in a car accident.
"I'm not going to lose another child," she says. "If I'm in old age and thinking is there something that I didn't do for Jack . . . if he ended up in Mountjoy because of frustration. I don't want to be wondering if I should have gone to the papers."
Up to now, all the reports describe him as a well-behaved, pleasant little boy. But in her most recent observations for the file, Kathleen has noted a disturbing trend.
"At home," she writes, "we have noted that Jack is becoming increasingly agitated and aggressive. His temper is becoming more erratic and it is becoming more difficult to reason with him. He keeps saying 'Why am I not able to do X, Y and Z?' He has noted that his classmates can do much better than him and it has started to become an issue. He says that he 'can't run very fast', that he can't understand his work/words, reading and writing, that he feels the other children do not want him to join in their games because he doesn't 'do things right'."
Already, at five-and-a-half, despite the best efforts of his parents and school, Jack Freeman is becoming increasingly at odds with the world, his peers and a normal childhood.
According to the professionals on the education side, a special needs assistant in the classroom and playground is required to help him back on track. The educational psychologist also recommended "liaison between the occupational therapist and Jack's teachers to allow for appropriate programme planning".
DESPITE THIS, IN the absence of a diagnosis from the health side, Jack ticks none of the 14 boxes under the Disability Code, according to Martina Gately. Therefore, the Special Educational Needs Organisers (SENOs) of the National Council for Special Education (NCSE), who deal with applications for support for children with special education needs, were able to inform Kathleen Freeman last Friday that there would be no special needs assistant for Jack and that his next assessment would be with an occupational therapist - which means a wait of two years; they were still working on cases from 2004, she was told.
With characteristic thoroughness, Kathleen Freeman asked for this "refusal to sanction help" in writing. In this Alice-in-Wonderland world, however, this does not amount to a refusal of anything, she was told, because Jack has not yet been assessed by the occupational therapist.
"They're refusing to refuse," says Kathleen succinctly. "Can you imagine what it's like for a parent who is not as confident or as up to speed as Kathleen?" asks Martina Gately.
John Carr, general secretary of the Irish National Teachers Organisation (INTO), says that children with special needs "are being failed by the lack of co-ordination between the Departments of Health and Education. An example of this is the way the Department of Education and Science insists on assessments that contain a definitive diagnosis of need before additional resources are provided. At the same time, assessments by health professionals of young children tend to be tentative rather than definitive. The result is that thousands of children are denied vital resources."
At Oylegate National School, its NEPS quota (two days a year with an educational psychologist) has already been used up but four other pupils need psychological assessment. Last year, the school privately funded assessments for five children (all confirmed to have speech and learning difficulties) at a cost of €350 a head, money originally intended for disadvantaged children.
"All our funding last year went to learning resources," says the principal, Pat Hackett. "How a school treats its less able should be the measure of a good school." Sources suggest that the Vincent de Paul Society has also funded such assessments.
The Freemans have already paid large amounts of money for various essential services for Jack, including an initial speech and language assessment and eye-care. His vision was down to 20 per cent in each eye. Jack's clumsiness has cost the family five pairs of glasses in the past seven months.
In desperation, with the help of the school, they have now turned to the private sector for a definitive diagnosis. Even there, the earliest appointment available is next March - at a cost of between €400 and €700, and an additional €90 for a report.
But Kathleen has seen tantalising glimmers of Jack's potential. "If he gets through the education system, gets through it without being bullied and teased - because no matter how good the school is, they can't stop someone laughing at him on the hurling field or on the street - if he can become an adolescent and a young man without being damaged by this, I believe he will be normal. If he gets the help he needs now, Jack will be a normal, average person."