If your child has special needs you may find yourself at odds with a systemthat can feel downright obstructive, writes Kathryn Holmquist.
More and more parents are learning that if they want effective therapies and services for their children with special needs, they have to go out and create these things for themselves. Kathryn Sinnott's battle is being replayed in families all over the State, and while Micheál Martin's ambitious National Health Strategy promises that every family should have a case worker assigned who will guide them through the system from the moment of a child's diagnosis, this aspiration has yet to materialise.
"If you don't do it, no one else will bother," says Hesline Marais of Waterford, who with her husband Keith Pethe, has been fighting a battle that no parent should have to endure. The couple have put every resource they have into finding the €50,00O a year that it costs to keep their six-year-old son Triston on the path to mental growth. It's a high price to pay, but nothing compared to the sheer courage of these parents in refusing to give up hope.
Given two weeks to live at birth, Triston was born with Congenital Rubella Syndrome, which gave him heart problems requiring surgery, made him profoundly deaf and rendered him blind in his right eye. Triston bashed his head against walls, slept only three to five hours a night and cried constantly.
"We have knocked on every door looking for help, since we knew that there was something else there, but we could not put a finger on it," says Hesline.
One of the doors they knocked on belonged to the Central Remedial Clinic in Dublin, where autism was eventually diagnosed. The family commuted weekly from Waterford to Dublin.
On a visit home to South Africa, Hesline discovered the Special Needs Adapted Programme (SNAPS), which has successfully modified the behaviour of children with autism. When Triston began the programme, he had two "signs" which he could use to communicate: "car" and "sweets". After four weeks with SNAPS, he had 150 signs. He is now reading and doing maths and the crying and head-banging have ceased.
Triston's parents continued the SNAPS programme back in Ireland by hiring a tutor. Triston's care is exhausting, since every interaction all day long must be handled strategically.
When other parents of children with autism discovered Triston's success with SNAPS, they wanted to become involved too. This group of parents have started a school in Waterford for five children aged four to seven with autism, called "The Jonah Project".
Why Jonah? "Autism is like a whale, it swallows up our kids and we want the whale to spit them out again," says Hesline.
The project costs €250,000 a year to run, so the parents are seeking donations. They have met the Department of Education and are still waiting for a positive response.
Programmes initiated by parents can work. For example, a year ago, I wrote in this column about Deirdre Muldoon and her speech and language playgroup in Dublin. The group is designed for children with language delays of various kinds. Many of these children cannot get speech and language services from their service providers due to staff shortages. A year later, the group has 20 children and is running two groups, meeting three times per week.
Alliances between parents and professionals in the private sector do work, although it takes incredible commitment to make such endeavours successful. Many parents, understandably, don't know where to start.
One parent of a child with ADHD advised me recently that a parent won't get anywhere unless she phones her local clinic or service provider and weeps with despair. It's not as manipulative as it sounds, because tears are often just beneath the surface for frustrated parents. Having to wear your distress on your sleeve is humiliating, but it is the kind of problem facing many parents of children with special needs.
There are some services available, but parents must be assertive, informed and articulate in order to access them. For example, the NAPS service can assess children, allocate resource teaching hours and, if necessary, ensure that a child is given a classroom assistant - this enables children with special needs to attend mainstream schools.
It really is left up to the parent, though, to get the ball rolling. Yet many parents don't know where to start. How do you negotiate the system? How do you even know what to ask for, if you are still unclear about which services your child needs? The latest trend is parenting courses aimed at helping parents of children with special needs - such as dyslexia, ADHD, dyspraxia, autism and giftedness - to cope with these issues.
Froebel College of Education in Blackrock, Co Dublin, is running year-long course for parents, teachers and special-needs classroom assistants. The course empowers parents by teaching them about current special education practice, education law and special education, and consulting and cooperating with mainstream teachers.
Another new course is Family Circles, run by a psychologist, Jane McNicholas, and her business partner Julie Neale. They are starting a parenting course that will teach parents of children with special needs how to negotiate the system and get the best care they can for their children.
Every parent feels that they can "make or break" their child's future, depending on how they handle certain issues. "It is a good thing that parents are aware of their importance and take their role seriously, but a by-product is the insecurity a parent may feel thinking that the future of their child rests with them," says McNicholas.
Parents need to learn to think about their children's problems in a constructive way, she advises. Many parents blame themselves for the problems, or may even allow others to blame them. McNicholas's aim is to help parents learn the skills they need to act positively around the situation.
"Unfortunately it is not as simple as finding a formula or any single solution. One of the things about parenting is that the ground is constantly changing. No sooner have you worked out how to get around a particular issue then your child comes up with something else," she says.
McNicholas aims to help parents clarify issues and find the help they need. "This Programme provides a collection of ideas from many different sources. It is not a 'how-to-do-it' manual. Instead, it is more about looking at the bigger picture and helping parents to make more conscious and informed decisions; to be proactive rather than reactive," says McNicholas.
Such advice, while coming from the private sector, is in line with "Investing in Parenthood to achieve best health for children", a strategy document produced by Best Health for Children, a project initiated by the CEOs of the health boards. The document is based on the deliberations of the Supporting Parents Sub-Committee of the National Conjoint Child Health Committee, two academic reviews commissioned for the project, consultations with parents themselves.
The strategy's vision is that parents are key to the health and well-being of children, but that parents need support in their role.
Facilitating access to supports is a key recommendation. In other words, everybody involved - parents and service providers alike - know what needs to be done to support the parents of children with special needs. All we need is the political will to do it. Until then, parents like Hesline and Keith are on their own.
Family Circles: Tel:(01) 282 0533; e-mail: info@family-circles.com. For information on the Jonah Project and SNAPS, call (051) 885832; 086 3716198; Fax - 051 889523. Froebel College: www.froebel.ie; email: admin@froebel.ie
