Friday 25 May 2018

'He’s entitled to the same life as any other child' - Irish mother calls for greater understanding of autism

Sinead O'Toole and Michelle Rowe
Sinead O'Toole and Michelle Rowe
Geraldine Gittens

Geraldine Gittens

Sinead O’Toole’s son Daniel (10) has a mild form of autism. He has language delay, and his behaviour can be unpredictable when he becomes overwhelmed.

But he loves video games; and his television, iPad, and Wii U are his security blankets - they make him feel safe. He also enjoys activities like swimming.

“The autism spectrum is so big; every single child on the spectrum is different. My son would be classed as mild, he has delayed language so it’s difficult for him to socialise,” she tells Independent.ie.

“I worry about him all the time. I worry what the future holds for him. People ask can you see him living on his own and living an independent life. My answer is 'I don’t know', I take every day as it comes.”

People with autism often “stim” as a way of relieving their brains of over-stimulation. Stimming usually manifests as hand-flapping, rocking, spinning, or repetition of words and phrases.

During family trips outside, bystanders react differently to Daniel’s stimming and unpredictable behaviours. Some stare, some react, while others smile and move on.

Awareness, Sinead hopes, will help people to understand why a person with autism stims or starts behaving unpredictably.

“It’s really difficult at times. Daniel can be quite unpredictable; if something triggers him when we’re out, he could get very upset which could lead to bad behaviours. I find that often people will look and they will judge and they will say things. Sometimes I’ll say my son is on the autism spectrum and I’ll try and explain what it is, and some people are nice about it.”

“We bring our kids into Dublin on the train as a treat. He always gets a seat, and one day, because there were no seats on this particular train, he became upset and he would try and sit on someone.”

“My husband was trying to bring him down to the other end of the train, trying to distract him, but what we had to do in the end was to get off at Maynooth train station.”

“There was one particular person who wasn’t very kind. It was a young girl.”

“I just wanted to get home at that stage. But we saw that there was another train empty and we showed him that it was empty and that we’d get a seat, so he was fine after that.”

“He has to be prepared for every social outing so that he knows where we’re going, what we’re doing, but if something doesn’t happen that was planned, it’s difficult.”

Sinead and her friend Michelle Bowe, who also has a child on the spectrum, are doing their skydive to educate people about autism. At the same time, they’ll raise funds for activities and sensory equipment at St Joseph’s school in Kilcock.

 “[As a parent of a child with autism] you’re very much alone. When he started school, I’d just given up work. When people see your child acting out, it was hard because I knew it was so difficult for him, and people are looking and they are judging.”

She added: “People shouldn’t be afraid to talk to [children with autism], and if they don’t talk back it mightn’t be that they don’t hear you, they mightn’t know how to talk back.”

“Please don’t stare, have good body language, be open about it. If you see a child that there’s something going on there, and they’re not just being bold, don’t judge. Give the child and the parent a chance to sort through it. I’d nearly prefer if a person smiled and walked away.”

“When a child is the same height as you and they’re having a meltdown it’s difficult, when a tall 10 year-old is frustrated and can’t tell you why, the last thing you want is to be stared at and judged and have eyes rolled up at you.”

Daniel has taught the family a lot about how to communicate with each other, Sinead says.

“He’s taught me a lot about myself aswell. He’s made us, the family... we’re very tight knit. We do a lot together and we never let it stop us doing anything either. He’s entitled to the same life as any other child.”

“It’s taken time, it hasn’t been an easy journey. He was my first child and it was quite a shock to be given the diagnosis. Once you accept it, and educate yourself, it’s easier.”

She explained: “Daniel would run a lot, he’d be quite active and run up and down; he’d make noises, and you’d get funny looks. But that’s just how he processes things.”

“We don’t holiday outside Ireland anymore now as he’s getting older. We find that when we holiday in Ireland we can bring a TV, his Wii U, our own internet and his ipad and some of his toys, and it gives us all quiet times in the evenings. He doesn’t feel safe if he doesn’t have those things with him.”

Sinead's two children Dylan (6) and Keela (5) are very understanding of their brother too, she says.

“They’re quite amazing in their empathy of him. They want to be friends with everyone and include everyone. That’s because I know they see how hard it is for Daniel.”

But she added: “It’s not hard all the time. We would go to the zoo a lot, and I try and go on a quiet time. If he hears a noise or a scream from a baby or a child, that could upset him, and he’ll go over and ask the child why they’re crying.”

“Last Saturday we went to the National Aquatic Centre and we showed him photos of it before we went, and when we were there we explained when exactly we’d be leaving, and it was three hours of bliss that we spent as a family.”

Sinead and Michelle will perform their skydive on April 21 with the Irish Parachute Club.

“[The skydive is] to raise awareness that there are children that have autism in the community. We want to teach the other children what it is and that the children who have autism are not just being bold when they have a meltdown.”

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