STRESSED out with the school run?

Wondering if you can successfully bi-locate and get Fionn to football and be back in time to collect Bebhinn from ballet? Can't figure out how to feed Dan (dairy-free) and Georgia (gluten-intolerant) a meal that they'll both eat? Ticked off because Tessa has been cast as a tree (again) and Sam didn't get a solo? Take a moment and spare a thought for the parents whose challenges are bigger than yours.

BEN PURCELL

"When Ben was born, we thought our lives were over" says Val Reid, mother of Ben Purcell, 12, who has Down's Syndrome.

"Now we don't know life without him."

Ben comes second in a family of four, with an older brother, Adam, 15, and a younger brother, Harry, 9, and sister, Molly, 6. Ben needed heart surgery when he was a baby, but since the age of 2 1/2 he has been very healthy and is a keen sportsman. "Ben's whole purpose in life is to compete in the Special Olympics, " says Tony, Ben's dad. "He plays basketball with the Blackrock Flyers, does gymnastics with the Tivoli Tigers and has just started learning to ski. He also plays for his school's [mainstream] hockey and basketball teams."

Most prized amongst Ben's possessions are the silver medals he won for basketball skills in the All-Ireland Special Olympics in Belfast in June of this year, and he has his sights set on the World Games in 2011.

Ben has been a pupil at Dalkey School Project, an Educate Together school with an inclusive ethos, for the past seven years. He settled in well right from the beginning and is clearly popular with his peers. Now in sixth class, he is preparing for secondary school next year. Along with many of his friends from DSP, he'll be going to Newpark comprehensive school, where his older brother Adam is already a student, and Val and Tony hope that he will be assigned a special needs assistant . . . he has had one all through primary school.

"In many ways, I feel our biggest challenges are ahead, " says Val. "I worry about all the normal things that any mother of an about-to-be-teenager worries about . . . girls and drink mainly . . . but I suppose in Ben's case my concerns are exacerbated.

At the moment he's biddable enough, I can manage him quite well and censure him when he needs it. His behaviour is really very good. I just want him to be happy, to behave appropriately, to have friends, to enjoy school and sport and to have a decent social life."

Ben's sporting talent means that he rarely finds himself on the sidelines, there's always someone to kick a ball or throw a few hoops with. And at his level, within the Special Olympics fold, he has the potential to excel. "He's larger than life, " says Val. "Life would probably have been a lot easier without Ben having Downs, but we don't know how it would be . . . we don't know it any other way."

DARA MORAN

"Dara's main challenge is his quietness, " says his father, Paul, who is a stay-home parent to Dara (3) and his brothers, Rory (5) and Oscar (1). Paul and his wife Catherine first noticed that there might be something amiss with their second son a couple of years ago. Dara was slow to point and to reference his surroundings, and is still largely non-verbal.

"A hundred years ago, he'd have just been left in a corner to get on with it. But we were keen to address whatever his issues were, and so we started taking him to speech therapy at our local health centre. They taught us the Hanen method of communication, which is all about turn taking and pre-verbal activities, thereby giving us the tool kit to work with Dara. Then we heard about the Early Language Intervention (ELI) playgroup, which is aimed specifically at kids with language delay, and it seemed like the right place for Dara."

Dara was enrolled in ELI's Stillorgan branch in March of this year. The family is in receipt of a home tuition grant which covers some of the costs of ELI. In his class, Paul saw other children like Dara. The family brought Dara for psychological assessment and in May of this year a diagnosis of Autistic Spectrum Disorder, or autism, was confirmed.

He's a charismatic little boy, very cute-looking, and without the traits that are often associated with autism. He has a lot of fun with two brothers who are so close in age. As Paul says, "Each child has a different experience of autism. Dara loves hugs and cuddles. His behaviour is good, he's easy to mind. He loves to go swimming and there's nothing he likes more than a busy playground. I was at a seminar in Trinity recently and people were talking about children being violent and disruptive. That's not our experience with Dara. Our challenge is to stop him from going in on himself, to provoke him into communicating with us. That and to get him eating a variety of foods. If it were up to Dara, he'd eat the same thing over and over again."

Dara's eye-contact is improving and, two weeks ago, he said 'Bye' to his friends and teachers as he was leaving ELI. It was the breakthrough that the family had been hoping for. Paul's aim . . . and that of ELI . . . is to have Dara ready for mainstream school when the time comes. Whether or not Dara will be better suited to a special or a mainstream school will have to be decided then. In the meantime, they will keep plugging away at 'the work' and keep an open mind as to what's best for Dara.

SHANE McGETTIGAN

Shane McGettigan, now 4 1/2, was adopted by his parents, Roisin and Steve, from Russia at the age of seven months. The couple have an older daughter, Laura, now aged 14. Roisin attributes his general developmental delay . . . Shane was slow to walk, had a lack of spatial awareness and, most importantly, had delayed speech . . . to a lack of basic nurture during his early months in the orphanage. "We first started to notice that something was not quite right when I started bringing Shane's pals home from playschool. They would have all been around 2 1/2then and I was flabbergasted to see how far ahead of him the other kids were, in every way. Nothing had been picked up either by the public health nurse or by the school. Until then I'd just thought he was a boy, so different to our daughter."

Roisin has been a member of the International Adoption Association, which offers support to pre- and post-adoptive families, since 1999 and has sat on various committees for the past five years. "We've made a submission to government on the lack of post-adoption services available here. For most people who adopt from abroad, their first point of contact is with a public health nurse or doctor, and they just don't seem to be familiar with the issues particular to adopted children. We are lobbying for a module on post-adoption needs to be incorporated into their training."

Roisin started to investigate the possibility of getting speech therapy for Shane and was told that in the public system she would have to wait for at least 18 months for an appointment.

Fortuitously, a newspaper advertisement for a summer camp for pre-schoolers with speech delay caught her eye and she enrolled Shane in ELI in the summer of 2005, when he was three. Since then, Project Shane has taken over Roisin's life.

"It's a window of opportunity, " she says, "and I'm not going to waste a moment of it. We have a chance until somewhere between the ages of five and six of making huge progress, it becomes much more difficult after that. I want to fix Shane for Shane, to enable him to be happy and calm."

Shane now attends ELI five afternoons a week and, in addition, has private weekly sessions with a speech therapist and an occupational therapist. The ELI approach is a holistic one, and Roisin has learnt that Shane's various issues are all interlinked. "ELI is amazing. We went in with what we thought was basically a speech problem, only to learn that Shane's motor skills, auditory processing, sensory integration dysfunction and behaviour are all connected. For instance, Shane never used to be able to sit still and we had him assessed for ADD and ADHD . . . neither of which he has. ELI put us in touch with a specialist paediatric occupational therapist, Pauline Moran, who has worked with us on Shane's fine and gross motor skills and on the sensory issues that he has. Combined with the behaviour strategies that we have developed with ELI we can see real improvements."

Certainly, the handsome, sociable and affectionate little boy who plays quietly with his cars seems happy in his skin. A week ago he went to a friend's party and stayed for the duration . . .something that would have been unthinkable a year ago.

Because of Shane's auditory processing issues, noise can still present problems of sensory overload. Last year's panto, for example, was a nightmare.

Roisin is hoping that, with further behavioural work to help him get used to crowds and noise, Shane will be able to attend a mainstream primary school and that he will be allocated a special needs assistant. "I dread to think what state we and Shane would be in now if we didn't have the resources to put into all this early intervention.

"The strides that he has made since we came into contact with ELI have been so enormous, yet we have had to pay for every bit of it ourselves. I reckon it costs us about 1,500 a month, every month. Of course, some of the costs are taxdeductible, but you have to have it each month in order to be able to do all of these things. It enrages me that only the privileged few can avail of a service as extraordinary as ELI . . . they get no state support whatsoever. If I didn't have the money, I'd be climbing the walls."

Early Language Intervention (ELI) 01 289 4503 www. eli-ireland. com
International Adoption Association 01 4579505 www. iaairealnd. org Pauline Moran, paediatric occupational therapist, 087 1344126