22 November 2016 – CANDACE ALLAN sensed there was something wrong with her son Kobe pretty much from the day he was born in May 2012.
“He always used to scream and scream, all night long,” the Hamilton mother-of-three explains over the noise of Nickelodeon TV playing in the other room to her children and a visiting nephew.
Her doctor, friends and family suggested it was colic or reflux – Candace still had her doubts.
Soon after he turned one, Kobe got severe tonsillitis and when he was two, a surgeon took the infected tonsils out and medical staff said removal of the swollen nodes could improve the toddler’s behaviour.
“I went back to them two months later and said that ‘I still think something is not right can we get him assessed’. Not much had changed. He didn’t say mum or dad; he couldn’t wave or do anything you would expect a two-year-old to do. But he could count and knew every letter of the alphabet.”
On referral to Waikato District Health Board’s Child Development Centre, Candace and husband Carl got the news that Kobe was “severely autistic” and had global development delays.
“We had the choice of three places to go with Kobe and chose the McKenzie Centre.”
McKenzie Centre is an Early Intervention service for children, aged from birth to six years, who have special needs, developmental delays and disabilities. The centre enhances a child’s potential for growth and development. At McKenzie Centre, children and their families get information, therapy, support and guidance on all aspects related to the child’s development and well-being, to help the child realise their potential.
“Getting that early intervention was amazing, I would encourage people to do that. It was a life saver for us. It gave us someone to talk to who takes the time to get to know each individual child and family. They then work alongside the families, early childhood education centres and anyone else involved to get the most out of the kids. We were so lucky to have the support of the McKenzie Centre – they have been amazing,” she says.
Earlier this year Candace became a parent representative on the McKenzie Trust Board and enjoys the opportunity to provide a parent’s perspective.
Candace and Carl are both school teachers which she concedes does help in some ways – both are able to put some structure in at home that makes parenting on the spectrum a little easier in terms of managing behaviour and understanding children and their individual needs.
Kobe, 4, is the middle child. Tyson, 5, is already at Glenview School, where Carl works. Youngest child Armani is 3 and yes if you are doing the maths, that’s three children under three when Armani was born.
“It’s been great for Kobe having siblings all close together, it has helped with the socialisation and his ability to play and share with others. It has also been great for Tyson and Armani to learn that everyone is different and to accept people for who they are and that their differences are a good thing. I do worry about Kobe getting bullied at school (when he starts), but I worry about the other two just as much.”
Candace soaks up whatever information she can about autism.
“I’m constantly learning, constantly sitting up at night reading things online about different strategies and things to do; talking to Suzanne at McKenzie Centre about new strategies and ideas. Looking at ways we can encourage and help him. It has tested me and taken a lot of time and effort, but it’s made me such a better person and a much better teacher too,” she says.
Her top tip for other parents is that autism is a good thing, not a bad thing.
“Kobe can do anything, he just takes a lot more work and time than a typical kid.
“Many see the diagnosis as a negative thing and that their child will struggle through life. Rather than that they should look at the positives and think about how amazing their child can be.
“The way Kobe thinks is so amazing, he is so clever and looks at everything in life through such a different lens. Children with autism think a bit differently but there is nothing they can’t do. They just take a little bit longer and require a little bit more support to get there. They do it though, they get there, I have seen it time and time again with my son.
“There’s nothing Kobe can’t do; he blows me away every day with the stuff he does. He achieves things I never thought would be possible.
“Sure I had major worries and concerns when I first found out and also thought that this was going to be such a major thing for not only him but also my family. In the end, it has been such an awesome learning experience for everyone and makes us better people, he teaches me things everyday I have learnt so much from him.
“Every child with autism is different. Get to know your kid and what triggers them. You’ve got to stop thinking this kid can’t do it because he is autistic. The label of autism should be used to get funding and support for the child but not used as an excuse not to achieve.”
It is important too for parents to keep living their own lives.
“It’s awesome to have the support of good friends and family, and continue doing everything you usually would, family trips, going to restaurants and many more.”
Next challenge is school for Kobe.
“He’s super clever and rote learns everything so quickly. He doesn’t like to follow instructions, especially if they don’t interest him which might make school quite interesting but we are definitely looking forward to what he will show us. He’s quite an outgoing boy, he’d live outside, he’d live on his bike, he’d live in the mud and the sand – that’s him.”
Kobe loves dancing too. Candace is also a dance teacher and runs a dance school. She recently started a dance class for children with special needs and their siblings.
“I wanted him to do dance because it will help with co-ordination, following instructions, being around others, and encourage his brain to cross over by his body movements. I just think dance and the structure and discipline that goes with this is fantastic for any kid. And it’s fun! It’s great for him and he gets to do it with his brother and sister. The dance and music gets him going, he loves music and also loves music time at the McKenzie Centre.”
Candace is convinced there’s not one model that fits all autistic children.
“The way he thinks is just so cool. I’d love to be in his head for just a second. He is just wired so differently and he’s the most loving, caring kid. There are no hidden agendas behind anything he does.
“He will be amazing,” says Candace.
This article was first published in Altogether Autism Journal Issue 4, November 2016 read the latest edition.