‘My son has no voice in the school yard’

'He is in a school yard of about 200 children, with no voice. It's very difficult." It's a stark image that Bridgette Keane conjures up of her non-verbal, nine-year-old son Mark Butler who has Down syndrome and attends a mainstream national school in north Dublin.

Like many a parent of a child with special needs, she knows she has to be his voice to try to maximise the chances of him reaching his full potential within the education system.

She’s not afraid to put her head above the parapet, although she knows other parents in similar situations fear that speaking out publicly may backfire when it comes to seeking support for their children.

“Mark falls into every gap,” she says with exasperation, whether it has been very sporadic speech and language therapy in the past 15 months; a lack of services due to maternity leave not being covered; or the absence of the July tutoring provision to which children on the autism spectrum are entitled. And her fight for the past year to get assisted technology for him to use as a communication tool in school is no exception.

The youngest of six children, Mark is in third class at Bayside Senior National school, along with his twin brother who doesn’t have special needs. His mother has nothing but praise for the school, and the separate junior school where Mark started at the age of 5½, not yet toilet trained but not adjudged to need a full-time special needs assistant.

The schools have been “amazing, but they are being hung out to dry”, she says.

Keane believes the use of a tablet with apps such as the award-winning Aacorn that is designed to help non-verbal children communicate in school could be of huge benefit.

“It’s not to take away from speech, it is to help with the speech,” she explains. She is aware of how frustrating it must be not only for Mark, being in a class with 24 other children and not being able to speak, but for his teachers and peers as well. The tablet could also be used for homework; Mark is left-handed and has low muscle tone so handwriting is extremely challenging.

Mark's service provider, St Michael's House, Ballymun, said it didn't have anyone qualified to carry out the assessment of him required by the Department of Education for assisted technology, and referred him to the Central Remedial Clinic (CRC).

“But the CRC turned us down because he has only an intellectual disability, not a physical disability, so he is not under its remit. I can understand this but I find it hard that nobody else in the country can do this assessment of a child with an intellectual disability.”

Applied for funding

In December she applied to get funding for an educational tablet through the HSE and, at the time of writing, is still waiting to hear from them. If it comes through, she has been told she must put the device on her home insurance policy, even though it will be travelling in and out of the school.

Such twists and turns in the labyrinth that parents of children with special educational needs have to navigate are not unusual. But it is wearying and, for those coming to it new, not a little daunting.

Of course the term “special educational needs” covers a multitude, ranging from those such as Mark born with an intellectual disability, or a physical disability, to those whose needs become apparent only after they have started school, be it a learning disability or an autism spectrum disorder.

Up to one in four children has some sort of special educational need, according to an ESRI study in 2011, which applied the broad definition of the Education for Persons with Special Educational Needs (EPSEN) Act of 2004 to data gathered by the Growing Up in Ireland survey.

Parents' difficulties in trying to ensure their children have the right support doesn't always come down to lack of resources, says Donald Ewing, head of psychological and educational services with the Dyslexia Association of Ireland.

“Policy-makers and resource-allocation bodies could improve systems to make it far easier for parents to navigate,” he suggests. Even working for an advocacy organisation, he finds himself regularly needing to go back and look at memos that were sent from a department to head teachers 21 years ago but are still a fundamentally relevant document in trying to address a resource issue.

“That is not something to be proud of in a 21st century education system,” says Ewing, who believes the expertise of parents is often overlooked.

“If you ask parents of children with challenging educational needs what they want, they want their child to be happy and comfortable and not stretched. They also, paradoxically, want high expectations to be given to their child but not to the point of being stressed.”

Right balance

Getting that balance right is not easy, he says, “but your key expert in that process is the parent. And yet, sometimes inadvertently and sometimes systemically, they are held at arm’s length.”

As a result, parents can’t be part of the process until they inform themselves how the system works and then, crucially, are prepared to assert what their child needs.

“There is information there but you need to know what you’re looking for and you definitely need confidence to go in and talk to teachers about it,” says Rita O’Reilly, chief executive of Parentline. “Some schools are more welcoming than others.”

Through its national phone support service, Parentline gets an overview of some of the issues these parents struggle with. As a result, it is running a conference in Dublin later this week on Parenting the Child with Educational Difficulties, aimed at informing and empowering parents.

Ewing will be one of the speakers, sharing insights from the world of dyslexia that would apply equally to children with other problems, and there will also be a chance to hear from a special education needs organiser (Seno), who deals with school applications for support.

O’Reilly hopes those attending will walk away with the confidence, language and assertiveness to ask questions and to look for services, and not feel they are demanding something they don’t deserve. Some parents struggle with the dilemma about labelling a child with a diagnosis, she says, but “you have to label your child to get the support”, says Ewing. Yet the label can be a burden if it means children view themselves as different, and it can lower their expectations and the expectations of others.

Ewing sees some parents pushing professionals very hard to put a diagnosis on their child’s difficulties.

“It can be a positive thing: it can explain a child’s needs, it can open doors to support, resources, advice.” On the other side there are parents who don’t want their child labelled, who see it as limiting.

So a support system needs not only to accommodate a huge range of diversity among children but also differing parental preferences, he says.

"The current system all revolves around diagnosis," says Lorraine Dempsey, chairwoman of the Special Needs Parents Association, but she is hopeful that change to a more flexible process, better geared to meeting individual needs of children, is on the way.

New model

The association has been consulted on, and is supporting, a proposed new model for allocating resources drawn up by the National Council for Special Education (NCSE). Designed to give schools more autonomy on the division of resources among its pupils and reduce the pressure on parents to pay for private diagnoses, the model is currently being piloted in a number of schools.

“It is imperative that we get it right,” says Dempsey. However, it will still be only a recommendation coming from the NCSE, and having it established as Department of Education policy is another huge step.

Ewing, for one, is “not filled with optimism”. While the NCSE “writes brilliant stuff”, some parts of the 2004 Epsen Act are yet to be implemented, so he wonders about the fate of mere recommendations.

With a general election imminent, Dempsey knows well that children with special needs is always a very emotive topic and something politicians will talk about. But she urges current and aspiring politicians “to please not use us as pawns in electioneering” and to ensure that anything they say is accurate and not “unnecessarily scaremongering”. “We are dealing with very, very stressed parents and families,” she says. “If they start putting out misinformation, parents will lock on to it.”

The phone calls the association gets are indicative of the difficulties parents encounter in seeking assistance for their children. One of the biggest issues is “lack of support from the health sector, where the school doesn’t feel supported in being able to address the needs of a child or issuing of reports”, she says.

“There should be no division between health and education – supports from both are needed to get these children through school as best as they are able.”

Typically there are problems around behaviour arising from a child’s disability and a breakdown in the school placement follows.

In such cases there can be one of two scenarios: either there are supports available and schools, for whatever reason, decide not to adopt the plans set out by the therapists, or there are no supports from the health side, and the school, the child and the family are all let down, she explains. “Both scenarios are difficult to overcome.”

Lengthy meetings

A Limerick mother of four, who asks not to be identified to protect her family's privacy, tells The Irish Times how recently she had to attend two separate, lengthy meetings on the same day, at different institutions, during which the continued school attendance of two of her children, both of whom have an autism spectrum disorder (ASD), hung in the balance.

Her 16-year-old son has high-functioning autism and is in fifth year in a mainstream secondary school. Her 15-year-old daughter has been in a special needs education setting from the age of eight.

They are two very different and complex cases within the same family but listening to her recount their start-stop-start journey through educational and health services, it’s clear that the common denominator is the need for tireless advocacy on the part of parents.

“No matter what we do, we feel like we are banging on brick walls at times,” she says. “Health and education need to mix here and it’s not happening,” she says.

Her son has had severe mental health difficulties and has made several suicide attempts, yet despite this and missing a lot of school, he did well in his Junior Cert. She believes he deserves the chance to do the Leaving Cert.

Meanwhile, her daughter was suspended after assaulting another child and a member of staff at school and is now being phased back in.

“Currently we have no psychological support, no psychiatric support and we have had no counselling” for their daughter, she says, and they are being forced to source and pay for it privately. “These all have to be put in place as she transitions back to school.”

In her experience, there are more challenges as children with special needs move into secondary school, yet it is a time when supports tend to drop away.

“Through the hormonal and teenage stage, the children are very vulnerable,” she says.

“It is when they start to identify they are a little different. There is nothing in the lines of support given to parents on how to deal with those challenging changes.”

However, she doesn’t view what she has to do for her teenagers as a burden. “They are my children and I will advocate for the best while there’s a breath in me. They need normality and, for them to progress into adults and to have any kind of a normal life, the resources need to be put in now.” Names have been changed in this piece

The Parentline conference, “Parenting the Child with Educational Difficulties”, is on Friday, January 29th, 10am-3pm in Wynn’s Hotel, Dublin, admission €20. For more information see parentline.ie.

For more information on the Special Needs Parents Association, see specialneedsparents.ie

swayman@irishtimes.ie

‘Moving Peter to a new school was the best thing we did’

The best thing single mother Mary says she ever did for her now 12-year-old son Peter was to change schools.

I was “that mother”, she says of her constant to-ing and fro-ing with her son’s first national school. But she feels she was fobbed off and not listened to.

When problems about his reading were first raised in senior infants, she was convinced that it was dyslexia because it was in the family.

But behavioural problems were causing the school more concern and she felt her opinion counted for little.

She had to pay for a private psychological assessment and he now has diagnoses of ADHD, dyslexia and dyspraxia.

The response of the first school was to “completely overload him” with work and it was suggested that she was mollycoddling him.

The question of an exemption from Irish was not entertained.

When she transferred him to an Educate Together school for third class, she suddenly found her views were valued as somebody who knew her son's needs better than anybody else.

It also offered gross motor activities and IT support and training, which have been of huge benefit to him.

The two schools are run under the same curriculum with the same State financing, she points out, yet it took the second one, “to turn his life around”.

It echoes a point made by Lorraine Dempsey of the Special Needs Parents Association that sometimes the problems encountered are not so much the system itself but individuals within the system.

But parents need to be well informed and persistent to see a way around that for their child.