One in 150 Canadians are born with autism, but who really understands the impact it can have?
Proud parents, Delee and Dean, pose for a family picture with their sons, Dane, left, and Drew. - Katie Ryan Photo
By Katie Ryan
Panic. Fear. And that sick feeling in the bottom of your stomach are what any parent feels when their child disappears or runs away.
For Dean and Delee Segberg, it happened twice. Their eldest son, Drew, disappeared once when he ran down the street from their Lloydminster home and again last summer.
Following a two hour search that involved the help of family, friends, neighbours and the RCMP, a neighbour found the Segbergs’ energetic five-year-old playing contentedly in the mud underneath the deck of a house across the street from Drew’s home.
“The only reason we found him is because the neighbour beside the house had returned home and heard this humming from under the deck. He looked over the fence and there Drew was in the mud,” said Delee, adding that like any other young child, Drew was likely making his way to the park to play.
Humming is one of Drew’s “stemming” behaviours – behaviours which are characteristic of those like Drew who have been diagnosed with autism.
“It’s like Fort Knox here now,” laughed Delee, referring to locks and chains on the front door that Drew is now unable to unlock. “The entire neighbourhod was looking for him, RCMP had started to mobilize. We just had to say he was autistic and then they were (involved) right away.” “Be aware of that (autism), if you see a kid wandering by themselves there could be something more to it. Also, if you see a kid in Wal-Mart for instance, throwing a tantrum, he’s not just a brat there might be something more to it,” said Dean.
The term “autism” actually refers to a range of conditions that fall under a broad heading – Autism Spectrum Disorder. ASD is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in areas of social interaction and communication skills. Children and adults with ASD have difficulties in verbal and non-verbal communication, social interaction and other activities.
According to the Autism Society of Alberta, today one in 150 children born in Canada will be diagnosed with autism. ASD is also the fastest growing developmental disability, with a startling growth rate of 17 per cent.
As a spectrum disorder, ASD affects each individual differently and at varying degrees.
“When you mention autism a lot of people think right away for Dustin Hoffman in Rainman,” said Dean.
“Or the extreme,” added Delee, “of the child sitting in the corner self-mutilating, rocking back and forth, banging their head and screaming.”
Drew is “high functioning.” He attends First Lutheran preschool four days a week and will enroll in Kindergarten in the fall. Drew also participates in gymnastics, works with several clinicians including occupational therapists and speech therapists and is a best friend to his younger brother Dane.
“Monkey see, monkey do,” smiled Delee, as her sons clambered atop the couches in the family’s living room, snacking on apples.
DIAGNOSIS
Early detection is crucial and is strongly advocated by the Segbergs. Prior to Drew’s second birthday, he was like most growing babies.
“He was talking and everything,” said Delee. But when their 22-month-old child became violently ill around Christmas three years ago, everything changed.
“It was just like somebody turned the lights off,” said Delee. “He quit talking – everything.”
“If you looked into his eyes and even still today, you can see when he is going to have a bad day – his eyes are vacant. You then kind of prepare yourself to a degree for the next day or two until he gets back into his own,” said Dean. “But that week or two when he was really, really sick he was just like another person. He stared through you.
“That’s kind of the turn table for autism, right around that 1.5 to two years is when they notice it.”
Children younger than Drew have been diagnosed with ASD, but what’s common for many children with autism is slow language development. Coming from a family of “late talkers,” eased any worry Delee and Dean initially had, but as they found out later from speech language pathologists (SLP) that shouldn’t be the case.
“That’s the only thing that kept us from doing it because we just thought it was normal, he was progressing really well, but all of a sudden, bam – he stopped talking and slowly he started to drift away from us,” said Delee, with visible emotion. “If you even have a little bit of an inkling of a problem, take them in.”
Following Drew’s recovery, it was a family member who works with children with disabilities, who pointed out Drew’s condition.
“She was the one who finally swallowed it and brought it up to us that our child is possibly autistic,” said Delee.
And while the family knew the diagnosis, they were placed on a year long waiting list for two solid days of testing at the Glenrose Rehabilitation Hospital in Edmonton, which Drew eventually underwent in 2008.
“From psychological to behavioural things, speech, physio–type work – you name it. They go right from top to bottom with your child,” said Delee. The test results were handed to a physician who then determined whether or not Drew was autistic.
Dean and Delee had been prepared for the news – that their son is autistic. But with the doctor’s confirmation, the family could finally access funding and other assistance from the provincial government for his specialized needs.
“We’ve had about 1.5 years of true funding and true help now, but before that we had about 1.5 years when it was all out of pocket, just doing the research all by ourselves,” said Dean, who works with National Oilwell. “It’s case by case. We get more than others, others get more than us – it’s determined case by case.”
PROGRESS
With the waiting behind them and a diagnosis in hand, the Segbergs were faced with a tough decision – how to treat their child’s autism.
“We were given a brown package with what is autism and these are the different things that you can do for it. You make the decision, it’s up to you,” said Delee. “When you go to the doctor they give you the diagnosis, but there is no ‘this is what helps autism, you have to do it because it’s the only thing that is proven’ – they don’t have that. They have 15 different possible roads that you could go down.”
The road Dean and Delee have chosen for Drew is called Kids First, a play–based therapy. While other parents might swear by a different therapy and its role in their autistic child’s progress, for the Segbergs Kids First allows Drew to be just that – a kid.
“They do the work within a play–based manner. They make it fun, there is no sitting at a table hammering flash cards,” said Delee, a massage therapist. “We still want him to be a kid, have some fun and go out and play, have his unstructured time,” said Dean.
When Drew was ill and “drifted away” he lost all of his language skills. But thanks to hard work, immeasurable amounts of patience and love, Drew has a voice. As proud parents, Dean and Delee are happy to report that their son, as of October 2009, is speaking in two word sentences and knows the entire alphabet from A to Z.
“Not everybody can understand him, but at least the main family can understand what is going on. We also have a picture exchange system that’s in order, so he has many different forms of communication,” said Delee.
Prior to then though, Drew was becoming increasingly frustrated, acting out violently even, because he was unable to communicate with his family. Celebrating the small triumphs, like learning a new word is important to the family of four. Drew’s progress is the result of a number of factors, including the Kids First program, socializing at preschool, his SLP, aids, the family’s holisti
c lifestyle and even his 2.5-year-old brother.
“It’s a combination of all of that and it’s having us – we are pretty determined parents,” said Delee. “We just want him to pay taxes,” Dean said with a chuckle. “That’s what I always say to everybody in any meeting we have when we are asked what our end goal for Drew is.”
Delee said her son still has a long way to go. Drew’s parents are teaching him the “bare, minimum basics” right now, such as how to brush his teeth, dress and use the potty.
“It’s a full, full–time job – just him,” said Dean.
AWARENESS
Cases of missing autistic children are becoming more and more the subject of headlines across the country, from Edmonton to Toronto and Nova Scotia. Here in Lloydminster, the Segbergs want other families with autistic children to know that they are not alone in the challenges they are faced with daily.
Delee estimates in the Prairie North Health Region there are upwards of 80 children, from 18 months to 18 years of age, diagnosed with autism – not including those currently on the waiting list.
“We are all one community and we don’t even know we are a community. It’s not a visible thing like other disabilities are,” said Dean.
The closest support group or organization for families with autistic children in Lloydminster is a 2.5 hour drive west – the Autism Society of Edmonton. While Dean and Delee said the foundation is a wealth of information, they would like to establish a support system closer to home. And in the near future the Segbergs are planning to start an ‘autism parent evening.’
“We plan to work our way up and hope to see something big out of it eventually, but Dean and I would like to start a once a month meeting for families,” said Delee.
It would be an evening of fellowship designed for parents of autistic children to meet and share their experiences, knowledge and tips with others who can relate to each other’s unique family. And while Delee knows that what might work for one family might not work with another, she thinks other families stand to gain a lot from a night out such as this.
“I am a big believer that you need a toolbox and you need to fill it with tonnes of different things because what works one day, might not work the next day or minute,” she said.