Jo Flood has just learnt that her 13-year-old son, Harrison, will be able to attend a local mainstream school near New Ross in Co Wexford next September that is opening a new autism spectrum disorder (ASD) unit.
At the moment, he attends a special school in Goresbridge in Co Kilkenny, which she says is “not the most appropriate placement” for him but adds that the staff there are “exceptional”.
She had to drive 1,000km a week just to get him to and from the school, but a school transport grant application was recently approved and Harrison now gets a taxi instead.
For Jo, these two developments are among the few positives in what has been a long, sometimes difficult and often expensive saga concerning Harrison’s school education that has included issues with inaccurate disability assessments, poor teacher training and breakdowns in communications with schools.
Harrison has ASD and a behavioural disorder.
But Jo has no regrets about the many battles she has fought on the special education front, not just for Harrison, but for members of the Cottage Autism Network, a Wexford parents support group that she chaired for two years.
She also home-schooled Harrison for a year following a disastrous experience with a local mainstream school.
“Because I had made good choices, up until this point, even though they were hard choices to make but good choices because they were benefiting Harrison, I said I was going to look out for what I think is the best school, because I know this chap better than anyone. He is a very special kind of a guy.”
Just over 30km away in Oilgate, near Enniscorthy, Margaret Nolan and her husband, Paul, live on a farm with their two boys, Liam, 12, and Sean, 10, who both have Fragile X syndrome, resulting in moderate intellectual disability, speech and language delay as well as ADHD (attention deficit hyperactivity disorder) and social anxiety problems.
After attending their local Montessori pre-school, Liam and then Sean enrolled at St Senan's primary school, a mainstream school with an ASD unit in Enniscorthy town, a school that Margaret has nothing but praise for.
"They're whole attitude was integration, making sure that there was no child left behind. Their enrolment policy includes all children of all abilities and all disabilities. I really do believe it's a unique setting."
All the same, Margaret and Paul do appreciate how lucky they have been.
“I’m in the company of parents of children of special needs frequently, and it can be very depressing because everybody is giving out about something,” said Margaret.
“You know, ‘What did you not get’, and all the fights you have to have to get this, that and the other.
“I’ve never had a fight because, I don’t know, somebody is looking after us and we happened upon this fantastic school, and we have been very lucky to have very good people who sent us down the right pathway.”
The contrasting experiences of these two sets of parents of children with (broadly) comparable special needs illustrates just how much of a geographical lottery it can be – even within the same county – to get access to good quality and appropriate education for special needs children in a local mainstream school setting.
Many of the parents we spoke to highlighted serious problems relating to poor training, information not shared or parents and professionals simply not working together well.
On the other hand, a 2008 survey of 1,400 parents commissioned by the National Council for Special Education showed that 75 per cent of parents were either satisfied or very satisfied with the support their children were getting at school.
How parents would respond to the same survey today given the cuts and caps in funding since then is less clear.
But what do the children themselves think? How are they faring with both their social and academic inclusion?
The ESRI's Growing Up in Ireland, a Government-funded longitudinal study of children, found that, overall, 12 per cent of children with special needs said they never liked school, compared with 7 per cent of their peers without special needs.
Researcher Joanne Banks said: “They were asked to what extent do you like school, and for a nine year old to say they never like school we would consider to be quite a strong statement, but 12 per cent of children with special educational needs reported never liking school.
“It’s quite a significant difference.”
Dr Joseph Travers, director of special education at St Patrick's College in Drumcondra, acknowledges the difficulties in engineering social inclusion.
“Social integration may not happen as naturally as people think. It requires more interventions and structure for it to happen.”
But the scale of the problem may be underestimated.
“Some parents actually opt for special schools at second-level around issues like that. That they feel their child may be more socially included in a special school setting. So that’s a challenge to inclusive education in mainstream schools that they need to respond to.”
Brendan O’Sullivan, a special needs teacher in Leixlip, Co Kildare, and president of the INTO, says his experience of the social integration in his school as a special needs teacher in mainstream school has been hugely positive, but adds that the pressure to pursue it even in cases where it demonstrably doesn’t work is still strong.
“It should be about what is best for the child, not what is best for your notion of equality, or your notion of what equality demands.
“Equality demands many things and it might demand, in some instances, treating people differently.”
Teachers report that differentiating the curriculum for an increasingly diverse class group can be very difficult without the right support and resources, while O’Sullivan hints at the frustration many teachers feel about the growing reams of research and information on special needs.
“There is a lot of information about diagnosis and what characteristics tell us about ADHD, autism and Asperger’s. It’s not quite as clear when it comes to the point of saying, ‘Well, what do we do?’”
Lorraine Dunne is a resource teacher at North Kildare Educate Together school in Celbridge, Co Kildare. She loves her job, but feels a permanent sense of "shifting sands" as the Department of Education tries to react to new thinking about teaching children with special needs.
“What seems to happen is that the department just moves it onto the teachers and now, because they need to see what we’re doing, they require a huge amount of paperwork from us . . . whereas before, you knew in your heart that this was something you should run with, you went with it.
"Now, you have to plan it in advance, make sure it's written down, and report back on it."
Special education module
Newly qualified teachers will have undertaken a module in special education as part of their ordinary teaching degree course, but there remains many more within the teacher body with no formal qualifications in this area.
Even in special schools, less than a third of teachers have any qualifications at post-graduate level, according to 2009 study by the NCSE.
Although she has no post-grad diploma in special education, Dunne has 12 years’ experience and was previously a visiting teacher for Traveller children.
She says it would be nice to have such a qualification, but “I think what really prepares you for this job is experience and, unfortunately, the two things are up against each other”.
St Pat’s has provided post-graduate teacher training in special education for nearly 50 years, but dr Travers doesn’t recommend developing undergraduate courses in special education, as they do in several other countries.
“I suppose it’s separating special education too much away from general education. Whereas if you go the post-grad route, you have your general education, you see the connections, and then you are specialising after that. That makes more sense to me.”
Such courses are often over-subscribed but, given the low base, it’s unrealistic to expect all of the nearly 10,000 special needs teachers to have specialist qualifications.
“What you could do is have a system whereby every school in the country got at least one person with a post-grad qualification in this area,” he says.
There is evidence that teachers are collaborating together much more effectively, including with the SNAs, says Dr Michael Shevlin, a senior lecturer in special education at Trinity College Dublin.
“If it’s a good school with strong commitment to the children, then generally you find that they find ways of working together. They develop teams of people, supporting each other. That’s what’s beginning to happen.
“That’s the big change I have seen, especially at primary level. Often, the resource teacher before was on their own.”
And, given the extent to which disputes are still being fought between parents and professionals, a balanced working relationship is essential there, too.
Educational psychologist Dr David J Carey says: "Co-operation which is power-hungry, that puts one person in a position – be it a principal, teacher or parent, by the way – in a position of decreeing or demanding exactly what is going to be done, is counter-productive and it doesn't help the child.
“Parents know the child best, but the professionals ought to be in a position to listen really carefully, respond appropriately and hope parents understand what kind of strategies, techniques and instrumental supports that are needed for the child. That’s genuine co-operation.”
Additional research: Alvean Jones
To read a longer version of this article, visit johncradden.ie
Case study: Despite mainstream schooling, the system can still fail
Sinead Winters Smith and Julie Anne Cunneen have two things in common. They are both parents to deaf children, and they are also deaf themselves. But there, their similarities end.
Sinead's three children are all deaf, with her two older boys, Callum and Oisín, attending St Joseph's School for Deaf Boys in Cabra, Dublin, while the third child, Eva, is at a pre-school but is expected to attend the local mainstream school in Arklow, Co Wicklow, as she is not as deaf as her brothers.
Sinead’s eldest son, Callum, who became severely deaf as a toddler, first attended the local mainstream school and seemed to manage fine in the beginning.
But as he got older, there were clues that he was missing out on what was being said, and he also became more aware of his deafness.
“His confidence started to suffer as a result of being seen as being different,” said Sinead, whose first language is Irish Sign Language (ISL).
By this time, Oisín had started in St Joseph’s school and, eventually, Sinead and her husband decided to enrol him there, too, against the strong advice of the same visiting teacher for the deaf who had urged them to send Callum to mainstream school years previously.
But the difference in Callum was clear: “He has come along in leaps and bounds in terms of vocabulary, learning and in his self-confidence,” said Sinead.
Julie Anne Cunneen's son, Liam, had, until recently, been attending both the deaf special class and a mainstream class at St Columba's National School in Douglas, Cork. He has sensory processing disorders as well as severe deafness, and has a cochlear implant – as does his mother.
Julie Anne, also on the advice of a visiting teacher, sent her son to the deaf special class along with six other deaf children in St Columba’s in September 2011.
Six months later, he got a cochlear implant from Beaumont Hospital, and his speech quickly improved.
“We were told that our son’s speech and language had bypassed the other children in the unit who used Irish Sign Language, and that he needed to move to the mainstream school.”
But in order to make the full transition from a class of six to a mainstream class of 30, the educational psychologist recommended that he have access to a full-time SNA because of his sensory processing disorder and other complex needs.
The bizarre upshot was that, from last April, Liam was restricted to one hour of school a day, which was the maximum amount of time the school could allocate a special needs assistant and his parents were told he would get no more unless the school could increase its SNA allocation.
But why not put him back in the deaf special class until more SNA support became available? According to Julie Anne, the principal said the special class could not meet his oral needs and would not allow him back in.
“Liam, like me, is a verbal deaf person. He uses very little ISL and he himself prefers to use oral communication.
“However, our problem now is that he seems to be stuck in no-man’s land. He can’t stay in the unit, and the mainstream class of 30 children is too much for him.”
Shortly after talking to The Irish Times, Julie Anne pulled her son out of the school and is tutoring him at home until another school can be found.
In their own different ways, Sinead and Julie Anne's stories highlight how, even though the vast majority of deaf and hard-of-hearing children are today educated in mainstream settings, the system can still fail them badly, or else offer very stark choices for their parents.
And at a time when the Department of Health has agreed to allocate nearly €13 million towards bilateral cochlear implants for children, advocates for Irish Sign Language point out that visiting teachers and other professionals still regularly fail to inform parents about family tutoring supports available for ISL, or even continue to argue that teaching deaf kids to speak English and use sign language are mutually exclusive choices.
"There would have been misinformation in the past that using sign language would hurt speech development and that's not accurate, or that there would be information that if the child was using speech that they don't need sign language," says Elizabeth Mathews, co-ordinator of the Deaf Education Centre, which produces research and offers advice to parents.
“Sign language is frequently discussed on a ‘needs’ basis, in that it should only be used if you need it, or if you don’t have speech, and that sign language is used almost as a form of rehabilitation.
“But it’s not. It’s a language in its own right and it has all the links to cognitive development that you’d like to see in a language.”
This article (and accompanying videos) was supported by the Mary Raftery Journalism Fund.