Family works to get autistic child back
Jacob Martinez grabs his green plastic chair, sits down and claps his hands.
It’s his way of signaling he’s ready to learn.
Mom Cathy Martinez puts a picture of a cat on the wall in front of him.
“OK, Jake. Cat.”
Jacob pops out of his chair, pulls the picture off the wall and drops back into his chair.
“Good job,” Martinez praises and gives Jake a Pringle’s potato chip — his favorite.
Over and over the Martinezes and their hired cadre of assistants teach 4-year-old Jacob to listen, respond and follow simple instructions, from placing a toy truck on a paper plate to taking Duplo blocks apart to pulling the right picture off the wall to grabbing simple objects like balls or cups on command.
Every time he coos, intonates or talks gibberish, his teachers compliment him.
“Nice talking, Jake.”
And they reward him with a Pringle, a mini M&M or a chocolate chip.
It’s a painstakingly intensive seven-days-a-week process that began 17 months ago.
But it’s the only way to get Jake back.
Jake has autism.
***
One out of every 150 children now has the baffling neurological disorder in which children’s voices, eyes and expressions disappear within the isolating walls of a brain misdirecting all human interaction.
Autism is the commonly used term for a whole spectrum of autistic disorders that can range from mild to profound. It can be coupled with other developmental disabilities, such as mental retardation, but just as easily can afflict otherwise “normal” children or even those who are highly intelligent and gifted.
Autism knows no socio-economic, racial or intellectual borders. It affects four times as many boys as girls — approximately one in 94 boys, according to Autism Speaks, a national organization.
There is no medical detection or cure for autism.
And scientists have no clue as to what causes the disorder. But as case numbers rise — at a rate of 10 percent to 17 percent a year — researchers are looking at a wide range of factors, from genetics to exposure to some type of environmental toxin in the womb to biological changes in the months after birth. Although some people claim it is triggered by mercury or thimerosal, a preservative used in some childhood vaccines, medical researchers have repeatedly said there is no link.
And today, very few vaccines contain thimerosal — for those that do, parents can request an alternative vaccine, said Dr. Wayne Fisher, director of the Center for Autism Spectrum Disorders at the University of Nebraska Medical Center’s Munroe-Meyer Institute.
What doctors do know is that the earlier autism is diagnosed, and behavior therapy started, the better the chance for a child to live a normal life.
It has taken decades to get to this point.
***
Once upon a time, autism was not diagnosed until age 3 or older.
Now pediatricians are trained to recognize the subtle red flags as early as 6 to 9 months — although the official diagnosis may not come until age 18 months or later. The American Academy of Pediatrics now recommends doctors screen children for autism twice before the age of 2.
And parents are being asked to track their infants’ developmental milestones from as early as 12 weeks of age.
However, even though autistic symptoms are detected earlier, treatment remains an issue.
Most treatment involves behavioral therapy, a way to program the brain to rewire itself and teach children through repetition how to interact, respond and communicate.
In Nebraska, children are eligible for special education services and related occupational, physical and speech therapies as soon as autism is medically diagnosed or “verified” through educational screening programs. Typically, that occurs around age 2 or 3.
However, an autism diagnosis also virtually guarantees that most insurance programs will exclude all coverage associated with that treatment.
Which means schools provide “appropriate” albeit limited services. Parents must pay out-of-pocket for any additional therapy they believe may improve their child’s progress. Treatment is costly. And the stay on waiting lists ranges from months to years.
Research finds that for best results, children with autism need intensive behavioral therapy as soon as the symptoms appear. School- provided early childhood special education programs often are limited to a few hours a week for infants and perhaps a few hours a day of preschool by the time the child reaches age 3.
Parents say that is woefully short of the six to 10 hours a day provided by nationally acclaimed Applied Behavior Analysis (ABA) programs offered by Munroe-Meyer or the Lovaas Institute in Minneapolis.
Children in these programs show astounding success at an equally astounding cost.
So parents like the Cesar and Cathy Martinez face gut-wrenching realities — accept that your child never will reach his potential, may never talk, communicate or form meaningful relationships because treatment will bankrupt you.
How do you give up? How do you simply accept that you cannot afford to do what is best for your child? How do you live forever with that nagging notion that you should have done something different?
Cathy and Cesar Martinez couldn’t.
They couldn’t just stand by and watch their one bubbly son further retreat into a wordless world of frenetic hyperactivity, ear piercing screams and social oblivion.
So they made a decision financially to risk it all for one year and provide Jake with ABA therapy at a cost of $55,000.
They took out a second mortgage. Cesar took a job that paid more, but kept him out of state four days a week. He works a second job when he’s home.
Cathy provides child care in her home. She’s hired college students majoring in early childhood special education to come in day and night to work one-on-one with Jake. Lovaas therapists come in weekly to train the parents and student teachers in ABA. They observe, test, review and fine-tune Jake’s therapy regularly.
They started in January 2007.
Today, the Martinezes are down to their last $5,000 — enough money for one more month of therapy.
What happens when the money is gone?
Cathy doesn’t even pause.
“We will either cash out our retirement fund or try to get a loan from the bank,” she said.
Stopping home treatment is not an option.
For the first time in more than three years, the Martinezes see Jake gaining ground, rather than falling deeper and deeper into an autistic abyss.
He has made progress — he can identify various objects and letters, he can follow simple commands, and he can say a few words, such as “juice,” “open,” “up,” rather than crying.
He turns 5 in July. In fall he will start kindergarten. He will start with half-days, working his way up to all-day kindergarten.
The Martinezes hope that will give Jake time to catch up with his peers. They definitely don’t want him to slip further behind.
Every day brings new worries and new struggles.
Autism is a very lonely diagnosis, Cathy says.
Jake’s story
Cathy Martinez knows kids. She’s raised four of her own, plus four stepchildren. She’s run an in- home day care for 14 years.
And yet, she wasn’t sure if there was something wrong with Jake, or if he simply was a late bloomer.
That first year, Jake developed normally. He was walking at 9½ months. He was talking. He recognized letters of the alphabet. Even made the appropriate sounds for some letters.
Around 20 months of age, he pulled away from playing with his siblings and the day care kids. He interacted only when prompted by his mother — and even that was disappearing.
“He wouldn’t play peek-a-boo. He wouldn’t play patty-cake. He stopped talking,” Cathy said.
He maintained eye contact — but with a newly acquired squint.
On a family vacation to Mexico, Cathy noticed a dramatic difference between Jake and his cousin, both just shy of 2.
Whereas the cousin talked in complete sentences, Jake hardly spoke words. The cousin was social and outgoing. Jake sat in a corner “banging his head on the floor,” Cathy said. He preferred to be off by himself, at times almost oblivious to others in the room.
Everyone reassured her Jake probably was fine. He had so many siblings he didn’t need to talk — they talked for him. He was a boy, and boys develop slower than girls. He’s just not gregarious; he prefers to entertain himself.
Cathy’s gut told her otherwise. At Jake’s 2-year checkup she voiced her concerns to the pediatrician.
“I may be crazy but ...” she prefaced before pointing out her observations.
The doctor questioned her extensively.
How many words did he know?
“Fifty.”
How many does he speak now?
“Few.”
“He wasn’t doing a lot of things,” Cathy said of Jake.
But he was doing some — he still maintained fairly good eye contact, his emotional responses were still appropriate. Jake went to Boys Town to have his hearing checked; he got a clean bill of health.
In July 2005, Jake went to LPS for a developmental screening.
LPS diagnosed him with moderate autism, falling in the 30s of a 1-80 Autistic Spectrum Disorder rating system.
Everyone reassured her; Jake was young. With early childhood education he could overcome many of the problems.
Jake immediately enrolled in special education.
After a full year of therapy, Cathy saw few changes. In fact, in some ways he had regressed.
It wasn’t that LPS had failed him. It was simply not enough to counteract the insidious aggression of the disorder.
Cathy fell into a deep depression — knowing they were quickly losing time.
At age 3 Jake still wasn’t potty-trained, wasn’t talking and wasn’t interacting with other kids.
Cathy sought help through Lincoln’s Autism Family Support Network. There she met dozens of families with children like Jake. And she realized she alone could not be to blame for Jake’s condition — it wasn’t because she fell once during her pregnancy, or that she had leg surgery, or that she drank diet pop or bottled water.
She stopped looking for reasons and redirected her energy into reclaiming Jake.
She’s become an “expert” of sort. She frequently receives phone calls from acquaintances of acquaintances asking “How did you know? Where can we go?”
It breaks her heart. It frustrates her. It drives her determination.
Despite its prevalence, autism is misunderstood. It is not like diabetes, which can be controlled through diet and medication. It is not like Attention Deficit Hyperactivity Disorder where persistence, patience and pills can pull them into the present. It is not caused by lax parenting, willful disobedience or rebellion.
It is a brain disorder affecting every aspect of a child’s life — touch, taste, sound and sight. Kids with the disorder are hypersensitive virtually to every sensation. Certain fabrics, foods, noises, surfaces can trigger an intense meltdown indicative of tremendous distress, rather than a childish temper tantrum.
Children with autism tend to be very rigid — things need to be done the same way every time, usually in the same place with the same people.
It took months to train Jake to tolerate a haircut, Cathy says. Today he loves them.
Progress is painfully slow.
Everything must be repeated — several times in a row, day after day, week after week. Praise alone is not enough to reinforce proper behavior. He needs physical rewards — that he wants — a Cheese Nip, a piece of a Dorito, popcorn, chocolate chip, granola or a turn on a swing or playing with a desired toy.
They are forever building upon skills. He no longer receives praise for simply making a sound, today he must try and use appropriate words: “open” if he wants something out of the refrigerator; “juice” or “cracker” to get what he wants.
He must try to call objects by an appropriate or reasonable approximation of their actual name.
“Otter otter” means teeter-totter. He calls the swing “wee” as in “wheee.”
He’s progressed from being able to identify a drawing of a cat, to identifying cats, cups and other objects in various forms from photographs, to drawings, to computer images, to toys, to the real thing.
The Martinezes pay teachers and therapists to work with Jake in their home 33 hours a week Monday through Saturday. In addition Jake attends LPS preschool 12½ hours a week.
When the hired teachers leave, Cathy, Cesar and the rest of the family take over — reinforcing, repeating, redirecting Jake’s behavior.
Just how much Jake eventually will regain and recover is unknown.
But Cathy and Cesar Martinez have no doubt they are doing the right thing.
“Forty years from now, I can live with the idea that we went bankrupt because insurance didn’t pay for treatment,” Cathy said. “But I cannot live with the question of ‘what would he be like if we had done treatment?’
“So we have taken control. We are going to put everything into it during this window of opportunity, and see what we get.”
Reach Erin Andersen at 473-7217 or eandersen@journalstar.com.
It’s his way of signaling he’s ready to learn.
Mom Cathy Martinez puts a picture of a cat on the wall in front of him.
“OK, Jake. Cat.”
Jacob pops out of his chair, pulls the picture off the wall and drops back into his chair.
“Good job,” Martinez praises and gives Jake a Pringle’s potato chip — his favorite.
Over and over the Martinezes and their hired cadre of assistants teach 4-year-old Jacob to listen, respond and follow simple instructions, from placing a toy truck on a paper plate to taking Duplo blocks apart to pulling the right picture off the wall to grabbing simple objects like balls or cups on command.
Every time he coos, intonates or talks gibberish, his teachers compliment him.
“Nice talking, Jake.”
And they reward him with a Pringle, a mini M&M or a chocolate chip.
It’s a painstakingly intensive seven-days-a-week process that began 17 months ago.
But it’s the only way to get Jake back.
Jake has autism.
***
One out of every 150 children now has the baffling neurological disorder in which children’s voices, eyes and expressions disappear within the isolating walls of a brain misdirecting all human interaction.
Autism is the commonly used term for a whole spectrum of autistic disorders that can range from mild to profound. It can be coupled with other developmental disabilities, such as mental retardation, but just as easily can afflict otherwise “normal” children or even those who are highly intelligent and gifted.
Autism knows no socio-economic, racial or intellectual borders. It affects four times as many boys as girls — approximately one in 94 boys, according to Autism Speaks, a national organization.
There is no medical detection or cure for autism.
And scientists have no clue as to what causes the disorder. But as case numbers rise — at a rate of 10 percent to 17 percent a year — researchers are looking at a wide range of factors, from genetics to exposure to some type of environmental toxin in the womb to biological changes in the months after birth. Although some people claim it is triggered by mercury or thimerosal, a preservative used in some childhood vaccines, medical researchers have repeatedly said there is no link.
And today, very few vaccines contain thimerosal — for those that do, parents can request an alternative vaccine, said Dr. Wayne Fisher, director of the Center for Autism Spectrum Disorders at the University of Nebraska Medical Center’s Munroe-Meyer Institute.
What doctors do know is that the earlier autism is diagnosed, and behavior therapy started, the better the chance for a child to live a normal life.
It has taken decades to get to this point.
***
Once upon a time, autism was not diagnosed until age 3 or older.
Now pediatricians are trained to recognize the subtle red flags as early as 6 to 9 months — although the official diagnosis may not come until age 18 months or later. The American Academy of Pediatrics now recommends doctors screen children for autism twice before the age of 2.
And parents are being asked to track their infants’ developmental milestones from as early as 12 weeks of age.
However, even though autistic symptoms are detected earlier, treatment remains an issue.
Most treatment involves behavioral therapy, a way to program the brain to rewire itself and teach children through repetition how to interact, respond and communicate.
In Nebraska, children are eligible for special education services and related occupational, physical and speech therapies as soon as autism is medically diagnosed or “verified” through educational screening programs. Typically, that occurs around age 2 or 3.
However, an autism diagnosis also virtually guarantees that most insurance programs will exclude all coverage associated with that treatment.
Which means schools provide “appropriate” albeit limited services. Parents must pay out-of-pocket for any additional therapy they believe may improve their child’s progress. Treatment is costly. And the stay on waiting lists ranges from months to years.
Research finds that for best results, children with autism need intensive behavioral therapy as soon as the symptoms appear. School- provided early childhood special education programs often are limited to a few hours a week for infants and perhaps a few hours a day of preschool by the time the child reaches age 3.
Parents say that is woefully short of the six to 10 hours a day provided by nationally acclaimed Applied Behavior Analysis (ABA) programs offered by Munroe-Meyer or the Lovaas Institute in Minneapolis.
Children in these programs show astounding success at an equally astounding cost.
So parents like the Cesar and Cathy Martinez face gut-wrenching realities — accept that your child never will reach his potential, may never talk, communicate or form meaningful relationships because treatment will bankrupt you.
How do you give up? How do you simply accept that you cannot afford to do what is best for your child? How do you live forever with that nagging notion that you should have done something different?
Cathy and Cesar Martinez couldn’t.
They couldn’t just stand by and watch their one bubbly son further retreat into a wordless world of frenetic hyperactivity, ear piercing screams and social oblivion.
So they made a decision financially to risk it all for one year and provide Jake with ABA therapy at a cost of $55,000.
They took out a second mortgage. Cesar took a job that paid more, but kept him out of state four days a week. He works a second job when he’s home.
Cathy provides child care in her home. She’s hired college students majoring in early childhood special education to come in day and night to work one-on-one with Jake. Lovaas therapists come in weekly to train the parents and student teachers in ABA. They observe, test, review and fine-tune Jake’s therapy regularly.
They started in January 2007.
Today, the Martinezes are down to their last $5,000 — enough money for one more month of therapy.
What happens when the money is gone?
Cathy doesn’t even pause.
“We will either cash out our retirement fund or try to get a loan from the bank,” she said.
Stopping home treatment is not an option.
For the first time in more than three years, the Martinezes see Jake gaining ground, rather than falling deeper and deeper into an autistic abyss.
He has made progress — he can identify various objects and letters, he can follow simple commands, and he can say a few words, such as “juice,” “open,” “up,” rather than crying.
He turns 5 in July. In fall he will start kindergarten. He will start with half-days, working his way up to all-day kindergarten.
The Martinezes hope that will give Jake time to catch up with his peers. They definitely don’t want him to slip further behind.
Every day brings new worries and new struggles.
Autism is a very lonely diagnosis, Cathy says.
Jake’s story
Cathy Martinez knows kids. She’s raised four of her own, plus four stepchildren. She’s run an in- home day care for 14 years.
And yet, she wasn’t sure if there was something wrong with Jake, or if he simply was a late bloomer.
That first year, Jake developed normally. He was walking at 9½ months. He was talking. He recognized letters of the alphabet. Even made the appropriate sounds for some letters.
Around 20 months of age, he pulled away from playing with his siblings and the day care kids. He interacted only when prompted by his mother — and even that was disappearing.
“He wouldn’t play peek-a-boo. He wouldn’t play patty-cake. He stopped talking,” Cathy said.
He maintained eye contact — but with a newly acquired squint.
On a family vacation to Mexico, Cathy noticed a dramatic difference between Jake and his cousin, both just shy of 2.
Whereas the cousin talked in complete sentences, Jake hardly spoke words. The cousin was social and outgoing. Jake sat in a corner “banging his head on the floor,” Cathy said. He preferred to be off by himself, at times almost oblivious to others in the room.
Everyone reassured her Jake probably was fine. He had so many siblings he didn’t need to talk — they talked for him. He was a boy, and boys develop slower than girls. He’s just not gregarious; he prefers to entertain himself.
Cathy’s gut told her otherwise. At Jake’s 2-year checkup she voiced her concerns to the pediatrician.
“I may be crazy but ...” she prefaced before pointing out her observations.
The doctor questioned her extensively.
How many words did he know?
“Fifty.”
How many does he speak now?
“Few.”
“He wasn’t doing a lot of things,” Cathy said of Jake.
But he was doing some — he still maintained fairly good eye contact, his emotional responses were still appropriate. Jake went to Boys Town to have his hearing checked; he got a clean bill of health.
In July 2005, Jake went to LPS for a developmental screening.
LPS diagnosed him with moderate autism, falling in the 30s of a 1-80 Autistic Spectrum Disorder rating system.
Everyone reassured her; Jake was young. With early childhood education he could overcome many of the problems.
Jake immediately enrolled in special education.
After a full year of therapy, Cathy saw few changes. In fact, in some ways he had regressed.
It wasn’t that LPS had failed him. It was simply not enough to counteract the insidious aggression of the disorder.
Cathy fell into a deep depression — knowing they were quickly losing time.
At age 3 Jake still wasn’t potty-trained, wasn’t talking and wasn’t interacting with other kids.
Cathy sought help through Lincoln’s Autism Family Support Network. There she met dozens of families with children like Jake. And she realized she alone could not be to blame for Jake’s condition — it wasn’t because she fell once during her pregnancy, or that she had leg surgery, or that she drank diet pop or bottled water.
She stopped looking for reasons and redirected her energy into reclaiming Jake.
She’s become an “expert” of sort. She frequently receives phone calls from acquaintances of acquaintances asking “How did you know? Where can we go?”
It breaks her heart. It frustrates her. It drives her determination.
Despite its prevalence, autism is misunderstood. It is not like diabetes, which can be controlled through diet and medication. It is not like Attention Deficit Hyperactivity Disorder where persistence, patience and pills can pull them into the present. It is not caused by lax parenting, willful disobedience or rebellion.
It is a brain disorder affecting every aspect of a child’s life — touch, taste, sound and sight. Kids with the disorder are hypersensitive virtually to every sensation. Certain fabrics, foods, noises, surfaces can trigger an intense meltdown indicative of tremendous distress, rather than a childish temper tantrum.
Children with autism tend to be very rigid — things need to be done the same way every time, usually in the same place with the same people.
It took months to train Jake to tolerate a haircut, Cathy says. Today he loves them.
Progress is painfully slow.
Everything must be repeated — several times in a row, day after day, week after week. Praise alone is not enough to reinforce proper behavior. He needs physical rewards — that he wants — a Cheese Nip, a piece of a Dorito, popcorn, chocolate chip, granola or a turn on a swing or playing with a desired toy.
They are forever building upon skills. He no longer receives praise for simply making a sound, today he must try and use appropriate words: “open” if he wants something out of the refrigerator; “juice” or “cracker” to get what he wants.
He must try to call objects by an appropriate or reasonable approximation of their actual name.
“Otter otter” means teeter-totter. He calls the swing “wee” as in “wheee.”
He’s progressed from being able to identify a drawing of a cat, to identifying cats, cups and other objects in various forms from photographs, to drawings, to computer images, to toys, to the real thing.
The Martinezes pay teachers and therapists to work with Jake in their home 33 hours a week Monday through Saturday. In addition Jake attends LPS preschool 12½ hours a week.
When the hired teachers leave, Cathy, Cesar and the rest of the family take over — reinforcing, repeating, redirecting Jake’s behavior.
Just how much Jake eventually will regain and recover is unknown.
But Cathy and Cesar Martinez have no doubt they are doing the right thing.
“Forty years from now, I can live with the idea that we went bankrupt because insurance didn’t pay for treatment,” Cathy said. “But I cannot live with the question of ‘what would he be like if we had done treatment?’
“So we have taken control. We are going to put everything into it during this window of opportunity, and see what we get.”
Reach Erin Andersen at 473-7217 or eandersen@journalstar.com.
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