She deprived her young son of sleep, dressed him in unfamiliar clothes and filled him full of liquids so that he struggled to control his bladder. And she did it out of love, writes Caroline O’Doherty
A MOTHER describes the painful lengths she went to in order to ensure her eight-year-old boy, who has autism, was allocated a special needs assistant to help him cope with the school day:
“I am ashamed to say that before my son was diagnosed with ASD [autism spectrum disorder], I thought that when parents talked about having to fight for everything, they were exaggerating.
“We are living in a first-world country, in the 21st century, I thought. There are ASD units in schools, there are occupational therapists, there are speech therapists, people are more understanding. Nearly three years after his diagnosis, I am still coming to grips with how stupid and uninformed I was.
“All these services exist, but in such a shockingly sporadic manner that in many cases, children get so few appointments, they are close to useless.
“Having a special needs assistant [SNA] is a huge help to a child with ASD trying to cope with the noise, activity, and organisational demands of a classroom, and during the boom, SNAs were reasonably plentiful in schools.
“In 2010, however, the numbers were capped and despite some increases last year and more promised again for this year, it can still be very difficult to get one.
“A few weeks ago, I kept my son up until 11pm one night, then woke him before 6am and literally dragged him, dazed, on a 4km walk. I fed him glass after glass of water. I put unfamiliar shoes on his feet and gave him the wrong lunch going to school.
“All because a SENO [special education needs officer] was coming to observe him in school that day, and I was terrified she would think he was too well able to manage to be granted access to an SNA.
“All those things might not upset a ‘normal’ child too much, but they have the potential to be very disconcerting to a child on the autistic spectrum.
“I am upset about what I did, but I believe it to be fully justified because I honestly believe my son will not be properly educated, or have a fair chance of becoming a reasonably independent, happy adult, without getting enough help in school.
“I’m far from alone in this. Many, many, parents do the same and more. At the very least, having to spend many hundreds of euro on private reports to secure a public service for a child is simply wrong; but when your child is foundering in school, you do it.
“That was my last-ditch effort to get him an SNA, having been turned down when he was diagnosed with ASD two years ago. I, and all the truly excellent staff who work with him at his mainstream school, believe this is necessary if he’s to fulfil his educational potential, but we were still left with a mountain to climb.
“Over the past year, putting together our application, I’ve spent many hundreds of euro on private occupational therapy and speech therapy reports. We were lucky that we could afford to do so — many parents don’t have the resources to gather this additional expert evidence of their child’s needs.
“The school also had our son assessed by a psychologist from NEPS, the National Educational Psychological Service, which is part of the Department of Education, who clearly stated in a written report that access to an SNA was needed.
“However, this isn’t good enough for another arm of the civil service, the National Council for Special Education [NCSE], who trot out their SENO to make the decision.
“SENOs, the NCSE say, come from a variety of backgrounds including nursing, teaching, and management, but they are employed as administrators. There appears to be no requirement that they have specialist, up-to-date expertise in the educational challenges associated with autism or disability in general.
“Yet he or she holds incredible power. If she says yes, my son gets help and has a decent chance of keeping up with the rest of his class. Refuse the SNA, and he falls further and further behind.
“This entirely ludicrous system allocates SNAs for ‘care needs’. These are obvious when a child is, for example, a wheelchair user who needs help moving around, going to the toilet and so on.
“But SNAs are not given for educational needs — though, as I feel like shouting, ‘it’s a school’, the purpose of which is to educate.
“The fact that a child with ASD usually takes far longer to process information, can’t keep up writing work from the blackboard, doesn’t have the social skills to interact well with classmates, can’t keep track of homework and books, and has many, many more difficulties don’t count.
“There are very few children with ASD who don’t need access to an SNA, so why not just give it to them and cut out this crazy, heart-breaking, terrifying process?
“It makes money for private professionals writing reports, downgrades the work of highly-trained psychologists employed by the Department of Education, and disregards the opinion of experienced, highly competent teachers and principals who are vastly better qualified to make these decisions.
“There’s a good ending here. My son is getting SNA access in September, and I am strongly hoping that it will make a big difference to him. He’ll have one-to- one help with organising his desk and books, for example; he’ll get assistance to do maths using counters and concrete materials because he simply can’t understand abstract concepts well enough, and he’ll hopefully be helped to socialise better with classmates.
“Others aren’t so lucky. It’s a lottery. Some schools are clued up on how to successfully apply for SNAs, and the provision varies dramatically around the country depending on how generous the local SENO is.
“They can just as easily be taken away, which is why I’m writing this article anonymously. I’m terrified of being identified, yet I am extremely angry and frustrated by this ridiculous system.
“I would say to the minister for education: Give SNA access to all children on the autistic spectrum. Give school principals a meaningful amount of discretion in the provision of resources. They are far better equipped to decide which children need help, and much more than a civil servant in an office. And respect the opinions of highly trained professionals such as psychologists.
“Meanwhile, I’m on to the next hurdle. Those occupational and speech therapists I mentioned at the beginning? With an average of one appointment a year in each of those areas from the HSE, I’ll make as many 120-mile round trips for private appointments as I can afford during the summer holidays, when being off school means my son is less tired and better able to cope with the journeys.”
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