Jake's chance

News Nov 22, 2006 Flamborough Review

Jake Tuin has an uncertain future.

The adorable toddler has a doting family, a cozy home and outstanding childcare. He's surrounded by love and affection, in a supportive rural neighbourhood.

He has all the building blocks of a happy, successful life. But without intervention - soon - this lovingly built foundation will crumble.

Jake is severely autistic. At three years old, he can't speak, make eye contact or communicate in any way.

His parents, Stacey and Peter, are left helpless. They watch him day after day, as he spins in circles or drops rocks in buckets for hours on end, with little awareness that there are people who love him so deeply, let alone that there are people at all.

Like any three-year-old, he has feelings and needs, but can't express them. He can't show that he's hungry or tired or has a sore throat, or wants to be held. He can't express that he feels happy, or sad, or that he loves his parents.

He lives in a bubble, watching the world, but unable to reach out and touch it, said Stacey. And he can't comprehend why no one understands him.

"My hearts breaks for him, watching this," she said.

Jake's not alone. Autism affects one in 500 people, affecting boys more than girls. It's the third most common developmental disorder, after mental retardation and cerebral palsy. It's more common than childhood cancer, yet receives a minute fraction of the research funding. There's no known cause and there's no cure.

Although Jake was born full of promise, Stacey and Peter knew that something was wrong by his first birthday. His speech development was almost non-existent. A word would appear one week, and not return for months, if at all.

"By 18 months, every word, including Mama was completely gone," said Stacey.

That launched a round of hearing tests; he'd had many ear infections as a baby. When those turned up negative, a wave of assessments started. A team was assembled at Chedoke Hospital. Developmental Pediatricians. Occupational Therapists. Speech Pathologists. They watched Jake play in his oddly repetitive manner. He'd move toys from one place to another and back again. He wouldn't make eye contact. He wouldn't engage with the people around him.

After months of testing came the dreaded diagnosis. Jake has Pervasive Developmental Disorder, part of the autism range of disorders.

"I hit the floor after that," said Stacey, fighting back emotions. "I hit the floor for a good two months. There was definitely a grieving process. I knew there was something not right. I had my suspicions it was PDD. But to me labels meant limitations."

Since then, the couple has read books, watched seminars, attended countless specialists' appointments. Through it all, they've managed to find ways for Jake to reach out, but no method is reliable. Sign language works some days, but not others. Some days, the PEC system works. In that method, pictures representing objects are placed around the home, like food, juice, a toilet. They're working to teach him to bring them a picture of what he needs. Sometimes, it works, and there's cause for celebration.

"Every milestone is like he's solved nuclear fusion," said Stacey.

Despite the little victories, life with autism is hard on everyone in the family. The Tuins have an older son, Josh, 5, who often gets pushed to the sidelines.

"We know he needs more attention, but we're always busy with Jake. He needs validation," said Stacey, who's worried that Josh is missing out, because going out with Jake is becoming too hard.

"He's bigger now, and more determined to have his own way," said Stacey. For instance, at the Rockton Fair, he couldn't understand that he couldn't get on a ride right away.

"He doesn't see the other people in line, he doesn't understand why he's not at the front," said Peter. To prevent a tantrum, Peter had to hold a place, while Stacey did laps of the fair with Jake.

The alternative is a meltdown, which happens often. To an outsider, Jake looks like a spoiled kid, throwing a tantrum. "People watching think he's a bad kid and that we're bad parents," said Peter. "You can see it on their faces. They're thinking 'just give that kid a smack,' but that wouldn't help."

Not even comfort has an affect on Jake, as long as the initial problem still exists.

The glares from uninformed strangers reached such a point that the Tuins now carry cards to hand out to irritated bystanders, explaining autism, and why Jake is acting the way he is.

'We thought it would be the most polite way of dealing with it," he said.

The challenge has left the couple visibly drained. Although they feel the experience has brought them closer together as a team, the workload is overwhelming. Every day, Jake requires constant supervision.

"It's like having a 40-pound one-year-old, with no sense of danger," said Stacey. One day, Peter turned his back momentarily, only to find Jake halfway to a pond on the property. He loves to see the splash from throwing rocks in the pond, and doesn't see the danger of jumping in himself.

Another day, Jake was running through the house with a knife he'd pulled from a child-locked drawer.

"It's things like that that scare us to death," said Stacey.

Despite their love and commitment, the Tuins don't have the training to teach Jake themselves. His only hope for a relatively normal life, they point out, is Applied Behavioral Analysis.

ABA is an education method that trains autistic children how to interact with the world. It uses a system of positive reinforcement to drill in the social cues other babies learn naturally. Eye contact is the first milestone. From there, they take the child as far as he or she can go. The goal is for autistic children to grow up with a disability invisible to the untrained eye. In fact, Stacey met one woman whose son had his autism label completely removed after several years in the therapy.

"I talked with this little boy on the phone, and I would never have guessed if I hadn't known," she said. "He was asking me questions. Autistic people don't ask questions, but he was having a real conversation with me."

ABA is a highly structured, rigourous therapy, requiring hours of intensive training by skilled professionals. It also requires lots of cash - at least $30,000 per year.

OHIP will cover an ABA program at Chedoke hospital. However, the waiting list has exploded to three years, following a court ruling that requires the hospital to accept children older than six. Before that ruling, the waiting list was kept at six months by limiting enrollment to toddlers and preschoolers; the therapy is most effective between the ages of 2 and 6.

"They learn best at that age. They're like sponges then, like all kids are," said Stacey.

The court ruling has devastated Jake's chances at a normal life. Without the training in these formative years, his future development is anyone's guess. He may never speak. The frustration he feels may make him violent. He may end up institutionalized, never setting foot in a normal school.

The fact is, by the time his name appears at the top of that waiting list, he may be six years old. His prime learning years will have been wasted.

"Chedoke understands our predicament. They're sympathetic. But their hands are tied," said Stacey.

The Tuins' only option for early intervention is a behavioral institute in Hamilton. They offer ABA, but it comes at a hefty price - roughly $30,000 per year. And that's a modest program.

"Some parents spend up to $70,000 per year," said Peter. "I don't know how they're doing that."

The program, he notes, costs as much per hour as many parents pay for a day of full-time daycare. If extra tests are required, that's added to the bill. If a specialist is brought in from another facility, that's tacked on too. Just an assessment is nearly $3,000.

"It's overwhelming," said Stacey. "How do people pay for this?"

The fact is, many can't, and suffer the consequences, she said. "We know one couple who remortgaged their house, and lost their house. Why bother teaching Jake the word 'roof' if we don't even have one?"

The couple is under the added strain that comes from being a single-income home. Taking care of Jake is Stacey's full-time, round-the-clock job. She's considered going back to work, but that would require not only after-school care for Josh, but specialized and costly care for Jake. He also has a constant flow of specialist appointments, which would interfere with even the most flexible job.

Despite the challenges, the Tuins are determined to find a way to help Jake be the best he can be.

"He's our boy," said Stacey. "We want to do everything we can for him."

But, like any typical, middle class household, working hard just to make ends meet, they can't manage it by themselves. They've set up a savings account to squirrel away any spare cash they can find, and are hopeful that local residents and service groups will help them give Jake the training he needs.

"This isn't about putting food on the table, or a roof over our heads. We can provide those things. But we've been thrown a real curveball with this," said Stacey.

With help, Jake can be assessed within days, and in a personalized training program within two weeks.

It's Jake's only shot at learning to break through his bubble, to join the world outside.

"It's all a matter of finding a path for them to learn," said Peter.

"We know him and we know how he learns. In this program, this kid would be astounding."

* * *

HOW YOU CAN HELP

Donations can be made to Jake's Fund at any TD Canada Trust branch. The bank asks that you please make donations payable to Stacey and Peter, in trust for Jake. The transit number is 3810, with account number 6284100.

Jake's chance

News Nov 22, 2006 Flamborough Review

Jake Tuin has an uncertain future.

The adorable toddler has a doting family, a cozy home and outstanding childcare. He's surrounded by love and affection, in a supportive rural neighbourhood.

He has all the building blocks of a happy, successful life. But without intervention - soon - this lovingly built foundation will crumble.

Jake is severely autistic. At three years old, he can't speak, make eye contact or communicate in any way.

His parents, Stacey and Peter, are left helpless. They watch him day after day, as he spins in circles or drops rocks in buckets for hours on end, with little awareness that there are people who love him so deeply, let alone that there are people at all.

Like any three-year-old, he has feelings and needs, but can't express them. He can't show that he's hungry or tired or has a sore throat, or wants to be held. He can't express that he feels happy, or sad, or that he loves his parents.

He lives in a bubble, watching the world, but unable to reach out and touch it, said Stacey. And he can't comprehend why no one understands him.

"My hearts breaks for him, watching this," she said.

Jake's not alone. Autism affects one in 500 people, affecting boys more than girls. It's the third most common developmental disorder, after mental retardation and cerebral palsy. It's more common than childhood cancer, yet receives a minute fraction of the research funding. There's no known cause and there's no cure.

Although Jake was born full of promise, Stacey and Peter knew that something was wrong by his first birthday. His speech development was almost non-existent. A word would appear one week, and not return for months, if at all.

"By 18 months, every word, including Mama was completely gone," said Stacey.

That launched a round of hearing tests; he'd had many ear infections as a baby. When those turned up negative, a wave of assessments started. A team was assembled at Chedoke Hospital. Developmental Pediatricians. Occupational Therapists. Speech Pathologists. They watched Jake play in his oddly repetitive manner. He'd move toys from one place to another and back again. He wouldn't make eye contact. He wouldn't engage with the people around him.

After months of testing came the dreaded diagnosis. Jake has Pervasive Developmental Disorder, part of the autism range of disorders.

"I hit the floor after that," said Stacey, fighting back emotions. "I hit the floor for a good two months. There was definitely a grieving process. I knew there was something not right. I had my suspicions it was PDD. But to me labels meant limitations."

Since then, the couple has read books, watched seminars, attended countless specialists' appointments. Through it all, they've managed to find ways for Jake to reach out, but no method is reliable. Sign language works some days, but not others. Some days, the PEC system works. In that method, pictures representing objects are placed around the home, like food, juice, a toilet. They're working to teach him to bring them a picture of what he needs. Sometimes, it works, and there's cause for celebration.

"Every milestone is like he's solved nuclear fusion," said Stacey.

Despite the little victories, life with autism is hard on everyone in the family. The Tuins have an older son, Josh, 5, who often gets pushed to the sidelines.

"We know he needs more attention, but we're always busy with Jake. He needs validation," said Stacey, who's worried that Josh is missing out, because going out with Jake is becoming too hard.

"He's bigger now, and more determined to have his own way," said Stacey. For instance, at the Rockton Fair, he couldn't understand that he couldn't get on a ride right away.

"He doesn't see the other people in line, he doesn't understand why he's not at the front," said Peter. To prevent a tantrum, Peter had to hold a place, while Stacey did laps of the fair with Jake.

The alternative is a meltdown, which happens often. To an outsider, Jake looks like a spoiled kid, throwing a tantrum. "People watching think he's a bad kid and that we're bad parents," said Peter. "You can see it on their faces. They're thinking 'just give that kid a smack,' but that wouldn't help."

Not even comfort has an affect on Jake, as long as the initial problem still exists.

The glares from uninformed strangers reached such a point that the Tuins now carry cards to hand out to irritated bystanders, explaining autism, and why Jake is acting the way he is.

'We thought it would be the most polite way of dealing with it," he said.

The challenge has left the couple visibly drained. Although they feel the experience has brought them closer together as a team, the workload is overwhelming. Every day, Jake requires constant supervision.

"It's like having a 40-pound one-year-old, with no sense of danger," said Stacey. One day, Peter turned his back momentarily, only to find Jake halfway to a pond on the property. He loves to see the splash from throwing rocks in the pond, and doesn't see the danger of jumping in himself.

Another day, Jake was running through the house with a knife he'd pulled from a child-locked drawer.

"It's things like that that scare us to death," said Stacey.

Despite their love and commitment, the Tuins don't have the training to teach Jake themselves. His only hope for a relatively normal life, they point out, is Applied Behavioral Analysis.

ABA is an education method that trains autistic children how to interact with the world. It uses a system of positive reinforcement to drill in the social cues other babies learn naturally. Eye contact is the first milestone. From there, they take the child as far as he or she can go. The goal is for autistic children to grow up with a disability invisible to the untrained eye. In fact, Stacey met one woman whose son had his autism label completely removed after several years in the therapy.

"I talked with this little boy on the phone, and I would never have guessed if I hadn't known," she said. "He was asking me questions. Autistic people don't ask questions, but he was having a real conversation with me."

ABA is a highly structured, rigourous therapy, requiring hours of intensive training by skilled professionals. It also requires lots of cash - at least $30,000 per year.

OHIP will cover an ABA program at Chedoke hospital. However, the waiting list has exploded to three years, following a court ruling that requires the hospital to accept children older than six. Before that ruling, the waiting list was kept at six months by limiting enrollment to toddlers and preschoolers; the therapy is most effective between the ages of 2 and 6.

"They learn best at that age. They're like sponges then, like all kids are," said Stacey.

The court ruling has devastated Jake's chances at a normal life. Without the training in these formative years, his future development is anyone's guess. He may never speak. The frustration he feels may make him violent. He may end up institutionalized, never setting foot in a normal school.

The fact is, by the time his name appears at the top of that waiting list, he may be six years old. His prime learning years will have been wasted.

"Chedoke understands our predicament. They're sympathetic. But their hands are tied," said Stacey.

The Tuins' only option for early intervention is a behavioral institute in Hamilton. They offer ABA, but it comes at a hefty price - roughly $30,000 per year. And that's a modest program.

"Some parents spend up to $70,000 per year," said Peter. "I don't know how they're doing that."

The program, he notes, costs as much per hour as many parents pay for a day of full-time daycare. If extra tests are required, that's added to the bill. If a specialist is brought in from another facility, that's tacked on too. Just an assessment is nearly $3,000.

"It's overwhelming," said Stacey. "How do people pay for this?"

The fact is, many can't, and suffer the consequences, she said. "We know one couple who remortgaged their house, and lost their house. Why bother teaching Jake the word 'roof' if we don't even have one?"

The couple is under the added strain that comes from being a single-income home. Taking care of Jake is Stacey's full-time, round-the-clock job. She's considered going back to work, but that would require not only after-school care for Josh, but specialized and costly care for Jake. He also has a constant flow of specialist appointments, which would interfere with even the most flexible job.

Despite the challenges, the Tuins are determined to find a way to help Jake be the best he can be.

"He's our boy," said Stacey. "We want to do everything we can for him."

But, like any typical, middle class household, working hard just to make ends meet, they can't manage it by themselves. They've set up a savings account to squirrel away any spare cash they can find, and are hopeful that local residents and service groups will help them give Jake the training he needs.

"This isn't about putting food on the table, or a roof over our heads. We can provide those things. But we've been thrown a real curveball with this," said Stacey.

With help, Jake can be assessed within days, and in a personalized training program within two weeks.

It's Jake's only shot at learning to break through his bubble, to join the world outside.

"It's all a matter of finding a path for them to learn," said Peter.

"We know him and we know how he learns. In this program, this kid would be astounding."

* * *

HOW YOU CAN HELP

Donations can be made to Jake's Fund at any TD Canada Trust branch. The bank asks that you please make donations payable to Stacey and Peter, in trust for Jake. The transit number is 3810, with account number 6284100.

Jake's chance

News Nov 22, 2006 Flamborough Review

Jake Tuin has an uncertain future.

The adorable toddler has a doting family, a cozy home and outstanding childcare. He's surrounded by love and affection, in a supportive rural neighbourhood.

He has all the building blocks of a happy, successful life. But without intervention - soon - this lovingly built foundation will crumble.

Jake is severely autistic. At three years old, he can't speak, make eye contact or communicate in any way.

His parents, Stacey and Peter, are left helpless. They watch him day after day, as he spins in circles or drops rocks in buckets for hours on end, with little awareness that there are people who love him so deeply, let alone that there are people at all.

Like any three-year-old, he has feelings and needs, but can't express them. He can't show that he's hungry or tired or has a sore throat, or wants to be held. He can't express that he feels happy, or sad, or that he loves his parents.

He lives in a bubble, watching the world, but unable to reach out and touch it, said Stacey. And he can't comprehend why no one understands him.

"My hearts breaks for him, watching this," she said.

Jake's not alone. Autism affects one in 500 people, affecting boys more than girls. It's the third most common developmental disorder, after mental retardation and cerebral palsy. It's more common than childhood cancer, yet receives a minute fraction of the research funding. There's no known cause and there's no cure.

Although Jake was born full of promise, Stacey and Peter knew that something was wrong by his first birthday. His speech development was almost non-existent. A word would appear one week, and not return for months, if at all.

"By 18 months, every word, including Mama was completely gone," said Stacey.

That launched a round of hearing tests; he'd had many ear infections as a baby. When those turned up negative, a wave of assessments started. A team was assembled at Chedoke Hospital. Developmental Pediatricians. Occupational Therapists. Speech Pathologists. They watched Jake play in his oddly repetitive manner. He'd move toys from one place to another and back again. He wouldn't make eye contact. He wouldn't engage with the people around him.

After months of testing came the dreaded diagnosis. Jake has Pervasive Developmental Disorder, part of the autism range of disorders.

"I hit the floor after that," said Stacey, fighting back emotions. "I hit the floor for a good two months. There was definitely a grieving process. I knew there was something not right. I had my suspicions it was PDD. But to me labels meant limitations."

Since then, the couple has read books, watched seminars, attended countless specialists' appointments. Through it all, they've managed to find ways for Jake to reach out, but no method is reliable. Sign language works some days, but not others. Some days, the PEC system works. In that method, pictures representing objects are placed around the home, like food, juice, a toilet. They're working to teach him to bring them a picture of what he needs. Sometimes, it works, and there's cause for celebration.

"Every milestone is like he's solved nuclear fusion," said Stacey.

Despite the little victories, life with autism is hard on everyone in the family. The Tuins have an older son, Josh, 5, who often gets pushed to the sidelines.

"We know he needs more attention, but we're always busy with Jake. He needs validation," said Stacey, who's worried that Josh is missing out, because going out with Jake is becoming too hard.

"He's bigger now, and more determined to have his own way," said Stacey. For instance, at the Rockton Fair, he couldn't understand that he couldn't get on a ride right away.

"He doesn't see the other people in line, he doesn't understand why he's not at the front," said Peter. To prevent a tantrum, Peter had to hold a place, while Stacey did laps of the fair with Jake.

The alternative is a meltdown, which happens often. To an outsider, Jake looks like a spoiled kid, throwing a tantrum. "People watching think he's a bad kid and that we're bad parents," said Peter. "You can see it on their faces. They're thinking 'just give that kid a smack,' but that wouldn't help."

Not even comfort has an affect on Jake, as long as the initial problem still exists.

The glares from uninformed strangers reached such a point that the Tuins now carry cards to hand out to irritated bystanders, explaining autism, and why Jake is acting the way he is.

'We thought it would be the most polite way of dealing with it," he said.

The challenge has left the couple visibly drained. Although they feel the experience has brought them closer together as a team, the workload is overwhelming. Every day, Jake requires constant supervision.

"It's like having a 40-pound one-year-old, with no sense of danger," said Stacey. One day, Peter turned his back momentarily, only to find Jake halfway to a pond on the property. He loves to see the splash from throwing rocks in the pond, and doesn't see the danger of jumping in himself.

Another day, Jake was running through the house with a knife he'd pulled from a child-locked drawer.

"It's things like that that scare us to death," said Stacey.

Despite their love and commitment, the Tuins don't have the training to teach Jake themselves. His only hope for a relatively normal life, they point out, is Applied Behavioral Analysis.

ABA is an education method that trains autistic children how to interact with the world. It uses a system of positive reinforcement to drill in the social cues other babies learn naturally. Eye contact is the first milestone. From there, they take the child as far as he or she can go. The goal is for autistic children to grow up with a disability invisible to the untrained eye. In fact, Stacey met one woman whose son had his autism label completely removed after several years in the therapy.

"I talked with this little boy on the phone, and I would never have guessed if I hadn't known," she said. "He was asking me questions. Autistic people don't ask questions, but he was having a real conversation with me."

ABA is a highly structured, rigourous therapy, requiring hours of intensive training by skilled professionals. It also requires lots of cash - at least $30,000 per year.

OHIP will cover an ABA program at Chedoke hospital. However, the waiting list has exploded to three years, following a court ruling that requires the hospital to accept children older than six. Before that ruling, the waiting list was kept at six months by limiting enrollment to toddlers and preschoolers; the therapy is most effective between the ages of 2 and 6.

"They learn best at that age. They're like sponges then, like all kids are," said Stacey.

The court ruling has devastated Jake's chances at a normal life. Without the training in these formative years, his future development is anyone's guess. He may never speak. The frustration he feels may make him violent. He may end up institutionalized, never setting foot in a normal school.

The fact is, by the time his name appears at the top of that waiting list, he may be six years old. His prime learning years will have been wasted.

"Chedoke understands our predicament. They're sympathetic. But their hands are tied," said Stacey.

The Tuins' only option for early intervention is a behavioral institute in Hamilton. They offer ABA, but it comes at a hefty price - roughly $30,000 per year. And that's a modest program.

"Some parents spend up to $70,000 per year," said Peter. "I don't know how they're doing that."

The program, he notes, costs as much per hour as many parents pay for a day of full-time daycare. If extra tests are required, that's added to the bill. If a specialist is brought in from another facility, that's tacked on too. Just an assessment is nearly $3,000.

"It's overwhelming," said Stacey. "How do people pay for this?"

The fact is, many can't, and suffer the consequences, she said. "We know one couple who remortgaged their house, and lost their house. Why bother teaching Jake the word 'roof' if we don't even have one?"

The couple is under the added strain that comes from being a single-income home. Taking care of Jake is Stacey's full-time, round-the-clock job. She's considered going back to work, but that would require not only after-school care for Josh, but specialized and costly care for Jake. He also has a constant flow of specialist appointments, which would interfere with even the most flexible job.

Despite the challenges, the Tuins are determined to find a way to help Jake be the best he can be.

"He's our boy," said Stacey. "We want to do everything we can for him."

But, like any typical, middle class household, working hard just to make ends meet, they can't manage it by themselves. They've set up a savings account to squirrel away any spare cash they can find, and are hopeful that local residents and service groups will help them give Jake the training he needs.

"This isn't about putting food on the table, or a roof over our heads. We can provide those things. But we've been thrown a real curveball with this," said Stacey.

With help, Jake can be assessed within days, and in a personalized training program within two weeks.

It's Jake's only shot at learning to break through his bubble, to join the world outside.

"It's all a matter of finding a path for them to learn," said Peter.

"We know him and we know how he learns. In this program, this kid would be astounding."

* * *

HOW YOU CAN HELP

Donations can be made to Jake's Fund at any TD Canada Trust branch. The bank asks that you please make donations payable to Stacey and Peter, in trust for Jake. The transit number is 3810, with account number 6284100.