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Brentley's journey with autism

Penticton Western News - 1/21/2018

"A nightmare."

Just a few months ago that was how a Penticton mother of two young children with autism described her life.

Living almost in isolation due to three-year-old Brentley General's severe, level-three autism, at the time the boy's prognosis and the family's future, was at best, bleak.

photo1"Brentley's been to hospital multiple times and I was told that he wasn't going to talk. I was told that it's okay he's hitting his head and that 'we're just going to put a helmet on him,'" recalled his mom Kelsey who has another son with autism, Lincoln, 2. "They (interventionists) actually spent more time trying to desensitize him to wear a helmet than they did to try and stop him from banging his head.

"A lot of (professional) people said he had severe autism and that meant he didn't like people, was just a classic sit-in-the corner."

Not about to give up on her son, she pulled Brentley from the structured program he was in and started researching other treatment options online.

One of the names she came across on the web was that of American-born, board-certified behaviour analyst Robert Schramm, who was living in Germany at the time.

His approach and methodology to Applied Behavioural Analysis (ABA) with Verbal Behaviour (VA) caught her attention.

Ironically, Schramm, 49, was in the process of moving to Penticton after working for 14 years as the lead supervising behaviour analyst for Europe's largest ABA/VB service that he started with his wife.

He found the Peach City on the web after choosing Canada over going back to the U.S. because of this country's better medical social system, more in line with what he was used to in Germany.

"Really, it was kind of accidental," said Schramm who visited Penticton with his family last summer and fell in love with it. "I looked up online for the best weather in Canada and the city of Penticton showed up as number one and I thought if we're going to move to Canada I want to go where the weather is nicest. It just felt like a cool place."

Although his methods go somewhat against the grain of traditional ABA approach, Schramm is an internationally known behaviour analyst and presenter at conferences around the world. He is regularly called upon to fix and upgrade ABA programs.

Schramm is also an author of the book Motivation and Reinforcement: Turning the Tables on Autism, which is a teaching manual to the VB approach to ABA, having sold over 10,000 copies in different languages worldwide.

Back to Brentley.

Sitting quietly on the couch, curled up with mom and watching his tablet, he looks up at her and smiles.

Two minutes later, he's up and on the go with that same smile, saying: "brush teeth, brush teeth."

This time it's Kelsey and Robert's turn to smile.

"Just him walking in here saying 'brush teeth' is such a big change in him," said Schramm. "When we started the number of requests spontaneously like this one, I think there were two or three things he could ask for and they were one-word sentences. Now he is asking for 53 different things spontaneously with multiple words; all that in just a few months."

Thinking back, Kelsey remembered that "Brentley would hit his head very hard on surfaces; now he rarely has any of those behaviours, maybe once or twice a week versus 100 times a day at one point." Brentley and mom

Schramm's technique is based on making learning fun for the child and looking at the world through their eyes to find out what motivates them.

"We create the 'fun with us' so that the child sees being with us, participating in learning, as the most fun they can have all day," he said. "We are trying to find a way to motivate a desire in the child to want to learn what we want to teach them. So, it's not just about, 'I'm going to teach you this because I want you to learn it,' but it's 'I'm going to find the way you are going to want to learn what I'm teaching you.'

"So when you've got the child really interested in wanting to learn, suddenly the door opens wide as to what the possibilities are."

He added the main goal is not just to teach skills but to teach them in a way to help the child to become a better learner – easier to teach in the future.

"Traditional forms of ABA that do not have a great understanding of verbal behaviour, like most of the ABA in the South Okanagan area, currently don't take into consideration the motivating operations to the degree that we do, and can teach skills, but often do so in a way that doesn't help the child becomes easier to teach," said Schramm, who is now the head of the new behaviour analysis department of Meridian Rehabilitation Consulting Inc. in Penticton.

At this point in the conversation, Brentley is on the move again, jumping off the couch, running down the hall yelling "chase me, chase me," and Schramm is quick to oblige. It's fun and part of the learning process.

"It's been life-changing for us and we still have a long way to go – he's not conversational, we've got a lot of skills to focus on, but the fact we can get through the day without professionals saying he needs a helmet, and professionals saying he'll never talk, is just incredible," said Kelsey.

Parent Involvement Critical in Helping Children with Autism

What is autism?

Behaviour analyst Robert Schramm describes it this way: "Autism is a description of behaviours that have no explanation."

He added many people don't understand the problem, considering it to be like Down syndrome which has a specific cause.

"With autism, we don't have the 'thing.' All you can do is look at the behaviour, so that's what's challenging about autism is that kids are being diagnosed because of their behaviour, not a specific abnormality," said Schramm.

One of the critical components of his treatment methodology is incorporating the adults involved with the child in the process.

"Everything we do is about teaching mom to be the most capable teacher she can be for her child," said Schramm.

"The person who spends the most time with Brentley (client Brentley General, 3) is the one who needs to know the most about how to help him.

"So instead of me taking Brentley and working with him one-on-one and trying to fix his problems and then give him back, what I want to do is teach mom and dad and the grandparents and EA (education assistant) and the school teacher how to work on those problems."

And often, it is the children who learn to control their surroundings because the parents are unable to find solutions on their own.

"Most of the kids that we meet for the first time, what's happened is the kids have trained the parents and the adults in the environment as to how they are allowed to behave around that child," said Schramm. "It's not the parents' fault, but the more a parent ultimately allows a child to control that environment the stronger those control behaviours become.

"So what the child learns is self-discovery, and when they learn self-discovery at a very early age then they don't develop the social desires, the social interests, because there's no value in it to them."

Brentley's mom Kelsey can see that the thought of a parent of filling the role of a therapist in their children's lives can seem daunting.

"I talked to a lot of parents who just want to be mom, and I think that barrier is understandable. You get scared because you're thinking, 'this kid runs my life, this kid, his behaviours are so overwhelming. But the fact is, it (helping them learn) is so natural.

"We're making ourselves fun, just as you would do with typical kids and they learn just like typical kids."

What that means for Kelsey is being able to take Brentley out in the community, to the swimming pool, without the constant fear of a meltdown and not knowing what to do.

"To some degree, we're teaching you how to be the parents you always wanted to be to your child, and because you understand the child better, you can actually be that parent, to be that friend," said Schramm. "We're teaching you to be the parent who says, 'come play, let's have fun, we're going to learn.' And the parent can do this with the confidence that they have the knowledge they need to be successful."

 
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