Aspiring to success... supporting children with Asperger syndrome
Veronica Leaney talks about some of the obstacles that she and other families face when it comes to supporting children, such as her son Sean, who are living with Asperger syndrome
One day Veronica Leaney took her two children to a mother and toddler group. She watched, transfixed, while her baby daughter shuffled over to join the other children. "She didn't care if it was girls with dolls, or boys with trains, as long as she could be with the other kids," says Veronica. Meanwhile, her older son Sean, was, as usual, sitting in someone's lap being read to. "Then it hit me with a bang, that there was more to this than just wanting to be on his own sometimes," says Veronica.
Soon after Sean started school, his parents took him for a private assessment. "We were told by the psychologist that he was very bright. She said such children tended to be bored when they started school, and so she gave us strategies for stimulating him intellectually." Soon after, Veronica was asked by the then director at the Centre for Talented Youth if Sean could read. She replied that he couldn't. But a couple of days later, he stunned her by suddenly reading the headline from the Sunday Independent out loud.
As time went on, Sean continued to be unsettled at school. "It was clear he was bored, but he also didn't know how to behave appropriately," says Veronica. "He would wander around the classroom, even when the teacher was reading to them. He was disruptive and different from the other children."
Sean concurs, with his mother. "I don't think I was hugely interested in being in the group. But I didn't want to be left out of things either," he says. Part of the reason may be because he was also battling with all sorts of psychological and sensory issues. He found it difficult to deal with extraneous noise. Flickering neon lights, smells, and the touch of other children all irked him.
Because children develop at different speeds, a general educational assessment is not usually done until the age of eight, when most pupils would be expected to have settled down at school.
"A five-year-old sitting under the table is cute; but less so when they are eight," says Veronica. "By then we were having to accept that he was definitely different, and that this [behaviour] was not going to go away." Sean was referred to the Child and Adolescent Mental Health Services, and was eventually diagnosed with Asperger syndrome (AS).
According to Aileen Cruise, development manager with Aspire Ireland, Asperger syndrome (or high-functioning autism) is a neurological condition whereby people think differently. This can affect their social, communication and flexible thinking skills, and can have a significant impact on the way they view the world, and the people around them.
This wasn't good news, but it did give the Leaneys something to work with. "We looked at the weaknesses revealed in Sean's diagnostic report. They said he needed occupational therapy and social-skills intervention, but they couldn't provide those services. So we took him to Wendy Rudd, a private occupational therapist."
Sean's fine motor skills were poor. This meant using a pen was a slow, almost painful process that resulted in an illegible script. So he began using a keyboard to do his homework, and fortunately he was allowed to use a computer for exams. This helped him enormously. He had many other difficulties, some practical, some social. For example, Sean had problems drowning out sounds. Fortunately, Wendy was able to help him tackle some of these issues. He also had a quirky side. "When he was about to make his First Holy Communion, he told the priest that he didn't believe in God. Father Donal said that was 'refreshing', he usually only heard this from the Leaving Certs," Veronica recalls,
In spite of his various problems, Sean made a successful transition to Scoil Chaitriona in Glasnevin. He adapted well to secondary school, even though he was forced to do two subjects that he disliked intensely. "Irish is a hybrid that doesn't know what it wants to be," says Sean emphatically. "While English is an arts subject about literature and poetry." However, he did take to Japanese and French (because of the "structure"), while chemistry, biology and physics, really ticked the boxes for him.
"He was the school's first pupil with Asperger," says Veronica, "and they were extremely proactive. Sean had a special needs assistant (SNA) and was allowed to leave class when he was stressed. Helen Dennehy, who coordinated resources at the school, would keep an eye on Sean's moods, and if there were problems, she'd call us. When the department tried to pull his SNA, she fought tooth and nail to get the SNA reinstated."
However, around exam time, Sean would become very stressed. "The school handled it brilliantly, and put specific strategies in place to deal with that," says Veronica. "Nonetheless, the six months before the Leaving Cert were still very hard for him."
Thanks to the support he got from his family, school staff and the other pupils, Sean got a raft of Bs and Cs, which earned him a place at Dublin City University (DCU).
At college he joined the Tea Society, and various other clubs, involving computer and board games, rock climbing and archery. All this in spite of the fact that he remains completely lacking in self-confidence. "I spend a significant amount of time being angry with myself," he volunteers. "I never miss an opportunity to insult myself. I also assume I'm getting it wrong all the time. Then I imagine I'm causing offence."
And painful as this may seem, Sean believes he would be much worse off if he hadn't attended drama sessions at Aspire, from the age of 11 until he was 18.
"There was no singing and dancing," he says, clearly relieved, "but we did a lot of role playing through drama, and all in a safe space." The sessions, he adds, endeavoured to build emotional resilience and to find tools that might help people living with Asperger syndrome deal with the challenges that they face.
Right now, Sean is in the third year of his chemical and pharmaceutical science degree at DCU. Veronica, who is clearly very proud of her clever and most endearing son, says he's hoping to work in the field of cancer research. Sean, for his part, is in a good space. "Now I actually have friends with whom I have things in common," he says enthusiastically.
Aspire Ireland (The Asperger Syndrome Association of Ireland), has been supporting people with Asperger syndrome, and their families, for the past 20 years. For more information, see aspireireland.ie
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