Her three-year-old daughter Mary has Down syndrome. She is clever, funny and chatty, but that may hold her back from getting the extra educational help she needs outside the classroom. The system seems to punish those with mild forms of Downs whilst not recognising it as a learning disability, she says
I don't boast about my older daughter. She's perfectly smart and bright and, obviously, I think she's a wonder, but I wouldn't say it out loud to anyone, because one doesn't. When it comes to my younger daughter, however, I want to scream her smartness from the rooftops. But I don't do that, either, and not because boasting about your kids is not the done thing, but because it's not necessarily a good thing. Well, it is; it's great that Mary, who has just turned three and has Down syndrome, is clever and funny and chatty and keen to keep up with her peers, but, at the same time, it's not. In about a year from now, before she starts school, Mary's learning disability will be assessed. And if Mary comes out of this as mild, instead of moderate or severe, she will be punished.
When Mary was born, in August 2010, warnings about pre-school assessments reached my ears before almost anything else. I heard about them before we even left the hospital. I heard about parents keeping their kids with Down syndrome up all night before they were assessed, about them feeding their children chocolatey cereal before the test, about coaching of kids to pretend that they couldn't hear properly. Anything to secure a "moderate" assessment, which, I was told, meant their child would get appropriate extra support at a mainstream school. A mild assessment, they warned me, would be a disaster. I'll be honest and admit that I thought there was a degree of scaremongering going on. I wish.
Since then, the word "mild" has become a bad word in my mind. I want it, oh, I want it so badly, for Mary, because it seems to suggest a slightly easier path, but not if it throws extra obstacles in her way. So you long for the boost of proof that she's the brightest little baba ever and then you brace yourself for the backlash. In Ireland, if you do OK in the geography lottery, then you will enjoy good early intervention services, such as speech therapy, physiotherapy, occupational and speech therapies, pre-school services and general support. Early intervention is proven to make a massive difference to children with DS in that baby-and- toddler window of opportunity, but it concludes when your child turns six. Then, it's up to the education system and that won't necessarily keep up the good work.
As Sarah Murphy, mother to five-year-old Tom, says: "It's like preparing for a famine. You feed them up for the first years, hoping that you've laid down enough fat for the lean years to come." But it's not enough, not by a long chalk.
At the moment, schools get learning support hours in proportion to the number of pupils in the school, and it is at their discretion to dole them out. Then there are resource hours, which are a specific number of one-to-one hours given to children who meet certain "low incidence disability" criteria. Emotional disturbance, autism spectrum disorders, vision and speech impairments, moderate and severe learning disabilities qualify a child for resource hours. Down syndrome is not on the list. Children with DS and a moderate or severe assessment qualify – but not because they have DS, but because they have an "assessed syndrome" with something tacked on to it. So, unless a child with DS and a mild assessment has something else too, well, then they're not disabled enough. Oh, and while speech problems might seem an obvious add-on for kids with DS, no, you need to have an average IQ to go with your speech difficulties to qualify under that one.
If your kid with DS and a mild assessment doesn't have an add-on – which, in any other situation, you wouldn't wish for in a fit – they are regarded as on a par with children of similar IQ and treated similarly. The tragedy of being treated similarly is the greatest irony of all, however, given that to be treated similarly would be your wish for your child in any other context.
So if the country's education policy doesn't cater for these children, it's basically down to the goodwill of the school, which is something I hear from every parent I speak to with a child in this situation. But goodwill is discretionary and down to good luck. If policy doesn't back it up – and if the policy makers appear to lack the same goodwill – then what about the schools that don't look kindly on these children, or can't make time for them?
Children in this situation are a stress on the school, much as it kills me to say it, because if they get no dedicated resource hours for them, then they have to give them a portion of the precious learning support hours that are there for the whole school population. Even I, with my bias, can understand that being able to group three kids together for a 40-minute maths boost seems far more attractive than giving a single child with DS all that time, all to themselves. Further, most people can understand that a child with DS has entirely different issues with learning than a typically developing child. It's not just to do with IQ, though the Department doesn't seem to accept that.
Lucy Harrington's daughter, Elisha Gallagher, 6, is in senior infants. Her teacher, on her own initiative and in her own time, took an online course in methods of teaching children with DS before Elisha started school last year. "Elisha's speech is very good for a child with Downs," Lucy explains, "but it's not up to par with her peers. If you're looking at more complex things, like describing things in the past tense, for example, we are having to do a lot of work on that at home. She gets no resource hours, and this year she'll get learning support with five other children for 30 minutes a day, and it's only around reading and literacy, with children whose needs are completely different."
"We've always done a lot of work with Elisha at home and I still do, every evening," says Lucy, "but I said to my husband last night, 'If Elisha had resource hours, it would be like winning the lotto.' But it wouldn't even cost that much. There is such a limited number of kids with DS with mild assessment that the floodgates are not going to open. And the long-term benefits could be so good. Elisha could go on and do her Leaving Cert, get a job, all that, but she'll need support to achieve that."
Sinead Toolan's six-year-old son Liam, from Glasnevin, Dublin, went into Senior Infants in September. He got a mild learning disability assessment before starting school and received no resource hours as a result. "Liam was the first child with Down syndrome to go to his school," says Sinead, "and they weren't aware of that loophole. They weren't bothered by it and they will do everything for him, but they know he needs resource hours."
"Last year," adds Sinead, "he got 30 minutes' learning support every day, one-to-one, but we don't know yet what he'll get this year, because there are more children in the school with needs this year."
Sinead gets Liam private speech therapy and occupational therapy to keep him up to speed and, further, she does one hour of homework with him every night, where his classmates do about one-quarter of that. "If he was getting that at school," Sinead says, "he could have a more normal life."
Lucy Harrington backs this up. She talks about having scant time to give her other, younger child the attention he needs because she's so involved with helping Elisha and outlines how much time she gives to keeping up to speed with the latest research. "But I'm not supposed to be a researcher," Lucy says. "I'm supposed to be Elisha's mother."
How, I ask all the parents I speak to, does the Department seem to fail to understand the needs of this small group of children? Have they never, in a country where one in less than 600 babies per year are born with DS, met a person with it? Of course they have, which means that all you can infer from their policy- making and apparent failure to get it, is that they refuse to get it.
What this fosters, in parents like me, is a sense of impending doom and the stories you hear from other parents – which include, no kidding, plenty of accounts of children who are getting no additional hours whatsoever – are not at all reassuring. Even in writing this, I feel anxious about the school which I hope Mary will attend. As sure as I am of the principal's decency and kindness, I dread that she might be put off taking Mary. It is her job, after all, to think of the whole school and all of the pupils.
"The problem," says Sinead, "is that there is no equitable allocation of resources. As the [qualifying] list stands now, some people get resources regardless of intellectual disability, whereas that's all they take into account with Down syndrome. We see that there's a finite amount of resources, but we want them shared out equitably. We're trying to emphasise that Down syndrome is not just an intellectual disability."
One of the earliest bits of advice you get when you have a child with a disability is not to think too far down the road, because it will paralyse you in the now, but it's hard to live it all the time. Sarah Murphy, whose son Tom will start school in September 2014, and who is part of a parents' group called Down Syndrome Equality Advocates, both longs for and dreads a mild assessment. She has been encouraged to teach Tom to read, but she's reluctant. Ability to read might make him more attractive – there's that horrible word again – to prospective schools, but if he saunters in to his assessment with a book under his arm, then mild is all he'll be leaving with. And yet, Sarah feels that she must make him attractive, as at least one prospective school has told her that he really might be better off at a special school.
"I want him to go to mainstream," Sarah says, "but I don't want him to get lost in a class of 30 children and I don't want to feel that my child is a big drain on the school in general and you really shouldn't feel dependent on the school's goodwill to keep him in mainstream."
For my Mary's part, in our catchment area, I have been told that if she gets a mild assessment she will not be eligible to join a special class in a regular school that exists in the area. Further, she will be discharged from the services, meaning she cannot attend speech or occupational therapy that they provide, or even attend the friendship clubs. So mainstream school it is, where, as supported by studies in the UK, kids with DS thrive. Children with DS are great imitators and in mainstream they learn massively about appropriate socialisation, they strive to keep up intellectually in order to fit in and they learn invaluable lessons about how to work in groups and how to function in society. They learn, in mainstream, how to get on in the world and, if it's money we're worrying about, they cost the State far less and are likely to cost the State less in the future if they are helped to grow up into adults capable of working and earning.
For most parents of a kid with DS, it's about keeping them in mainstream as long as possible, because even our children who have mild assessments at the age of four will most likely mature into a moderate range of learning disability.
In case you're wondering what the SNAs are doing in all of this, they are doing their job and their job is not, officially, an educational one. Employed by the HSE, rather than the Department of Education, they are there to help with practical things like the toilet, taking off and on coats and shoes, keeping control of the child and so on. Of course, it goes without saying that SNAs help the child in their charge with their school work, but only out of the aforementioned goodwill.
One logical and inexpensive solution to giving children with DS and a mild assessment a boost would be to train up SNAs, Sarah Murphy says, though she laughs at the chances of this happening.
"I'm shocked at how unfair the Department of Education is to my child. This is a bureaucratical oversight," Sarah says of the failure to recognise DS as a classification of learning disability, "and they won't just say they were wrong. Of course children with Down syndrome need extra help, all children with Down syndrome, regardless of whether they are assessed as mild, moderate or severe. Anyone can see it. I wouldn't mind if it wasn't so ridiculous."
"There is a working group on it at the moment, on the provision of special education," she adds, "and they're reporting back in April, but who knows when it will actually happen? And who knows when their recommendations will be implemented? They say they want to change the system entirely, but when? Something should be put in place for these children in the interim."
I know that the year between now and my Mary's assessment will fly past. It will be upon us before we know it and I doubt that anything will have changed, in terms of education policy. What will have changed is Mary, because I and the girls in her Montessori and the staff in her early intervention services will have put the work in. And she, the determined, quick-minded little article that she is, will have worked just as hard. And, as things stand, all I can hope is that the goodwill of her prospective school won't have changed because that, it seems, is the only thing upon which Mary can rely.