Saturday, February 21, 2009

Making headway - With work, 3-year-old showing improvement

RONAN - The little boy works so hard to put the 12-piece jigsaw puzzle together. Watching him concentrate as he twists the pieces round and round, searching for two that will interlock, borders on nerve-wracking.

It's his first time with this particular puzzle. His frustration grows incrementally with your anxiety, and occasionally he emits an “Ee-oh-ee-oh-ee-oh” sound that, his mother is sure, is his version of a string of cuss words that would make a sailor blush.

Slowly but surely the “Snow White” scene comes together, until there is just one piece left to complete the picture.
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He's so close, so many times, and you want with all your heart to reach out and help him maneuver it that last fraction of an inch, so that it will fall into place for him.

But you don't.

You can't.

It's fine to help him, but he needs to learn to ask for help before you give it to him.

So until he does, the piece is twisted and pushed, twisted and pushed, the “Ee-oh-ee-oh-ee-oh” growing louder.

Suddenly, it's there, perfectly positioned. Decker Cote, age 3 1/2, shoves down on it and it locks in with the rest of the puzzle.

His eyes light up. Every adult in the room screams as if their underdog had just won the Super Bowl.

His teacher, Holly Porter, gives him a high five, then lifts the giggling boy and throws him into the air.

Back on the ground, Decker runs to his mother, Charlie Cote, who picks him up, nuzzles him, and tells him, “You're so smart. I'm so proud of you.”

In reality, it's only been six or seven minutes since Decker started the puzzle, but it seems like a lifetime.

And if you want to know why everyone is so excited about every little task that Decker Cote successfully completes, you need only to have known the little boy 10 short months ago.

Will and Charlie Cote's young son would foam at the mouth, bite himself until he drew blood, tear his hair out by the fistful, choke himself until he would vomit 20 times in the space of five minutes.

Decker Cote suffers from autism.

“It was so disturbing,” Charlie says. “All you could do was hold his arms by his side while he screamed, because you didn't know what else to do.”

Trips to the grocery store were a nightmare - the boy would end up underneath the shopping cart, his little fingers wrapped around the cart's bottom in a death grip, screaming bloody murder all the way. The family - which includes Decker's older brother Carter, now 6, and little sister Timber, who is 2 - quickly gave up on any outing that wasn't necessary.

The boy would sit in front of a kitchen cupboard and slam the door repeatedly for hours on end if you let him, finding some strange sort of comfort in the “bam” sound that echoed back at him endlessly.

Make him stop and he'd throw a skin-biting, hair-pulling, screaming and crying fit of monumental proportions.

The longest tantrum reached 17 consecutive hours.

“As a family, we fell off the face of the earth,” Charlie says. “We couldn't even go to dinner at my folks' house - any change in Decker's world turned ours upside-down for two to three days.”

It hadn't always been like this. For the first 12 months of his life there was nothing abnormal about Decker's behavior or development.

“He had speech as an infant,” Charlie says, “and just lost it. It was babbling, his own language, but it was there - ‘nana' for food; ‘hot,' he said it and knew what it meant, whether it was food he was eating or when I put him in the tub. He called his sister ‘Nice' because we were always saying, ‘Be nice to the baby.' ”

Just as important, Charlie says, Decker was “totally engaged” as an infant, smiling and giggling through games like “peek-a-boo.”

Then, over two to three months, it all went away, vanishing the way a setting sun leaves a world pitch black.

“He not only quit using the words he had developed, he didn't know what we were talking about when we used them,” Charlie says.

Most disturbing was the baby's refusal to look at his mother or father, or anyone else.

“You couldn't even force him to,” Charlie says. “If you tried to make him make eye contact, he'd cry like you'd slammed a door on his hand.”

It was a gradual slide. His parents were as confused as they were concerned.

“Will would say, ‘Is that right?' ” Charlie says. “Kids can be quirky, and we weren't sure. Timber was a new baby - was he just jealous? But it started getting to be too many things, there were too many signs.”

Decker Cote was disappearing into his own, strange, unknown world.

One of Will and Charlie's first thoughts was that Decker might be losing, or have lost, his hearing. It would explain why he wasn't talking anymore.

At the Confederated Salish and Kootenai Tribal Health Clinic, Eve Tolbert tested the not-yet-2-year-old.

“Decker was way out of hand, and I think she knew,” Charlie says of Tolbert. “I think it's the first time I heard anyone say the word ‘autism.' ”

A trip to the Child Development Center in Missoula for an autism spectrum disorder evaluation was next, but the Cotes discovered there was a long waiting list to get in.

“It's a bummer, because early intervention is critical,” Charlie says. “We were put on a call list. We were quite certain by this time it was autism, but I wanted to be wrong so bad you can't believe it. We weren't craving the diagnosis, but you have to have it before you can get services.”

It took six months to get in, but once there, Charlie says the team that diagnosed Decker with autism was exceptional. William Cook, the doctor who broke the news to Will and Charlie, was “just great,” she says. “There was nothing clinical about it. He was such a human being. You could tell it just broke his heart to tell us.”

One of the possible reasons?

“I've often thought, ‘What if Decker had been diagnosed with cancer?' ” Charlie says. “That would be terrible, too, but at least with a cancer diagnosis they can tell you what to do - you do this, you do that, you get sent to Seattle, there are actions you take. When the diagnosis is autism, there is no game plan. You've got to go find it.”

And so Charlie Cote did. In fact, she had started before the official diagnosis was delivered.

Her one rule: Avoid the Internet.

“You can get eaten up by all the information on the Internet,” she says. “Try this diet, use these biomedical treatments, try this drug or that injection. I wanted to find something that's been done for a while, and that works. I didn't want to experiment on him. It's my child.”

Her best source, Charlie says, was a book, “Facing Autism,” by Lynn Hamilton.

“All your homework done by a mom who's gone ahead of you,” she explains.

That helped lead her to the work of Dr. O. Ivar Lovaas, a UCLA professor with four decades invested in autism research. The Lovaas approach to Applied Behavior Analysis, Charlie says, is simple. It rewards and praises appropriate behavior in an autistic child and ignores irresponsible behavior.

If the child completes a task successfully - it can be as simple as placing a block in a bucket - they “get a big party,” Charlie says. “It can be licking a sucker, or getting tickled, or playing with a toy they like, or throwing them into the air and swinging them around.”

If they don't do it, there's no punishment - but there's no party, either.

It does sound simple, and at its core, it is.

But each child with autism is different, and there is a lot of work involved in getting a tortured child like Decker from where he was last March, to where he is today.

Their first step was to contact Steven Michalski, founder and director of the Redwood Learning Center in Sandy, Utah.

Michalski had studied under Lovaas at UCLA.

Twenty-eight-year-old Will Cote and his father operate two Mission Valley businesses, a welding and fabricating shop and Cross Diamond Boom, a crane service. Will and Charlie also have a small cow-and-calf operation on their ranch west of Ronan, plus run the ranch next door that belonged to Charlie's parents after her father passed away.

To several full-time jobs the Cotes added another: Recovering their son from the grips of autism.

There are arguments about whether autism is a disease or a disorder, and arguments about how to treat it, but the Cotes chose the route with 40 years to back it up.

Will remodeled his workshop on the ranch into a classroom for Decker. Charlie hit up dozens of local businesses for help, organized a fundraising spaghetti feed that drew so many people from the community - 600 - that both Ronan's grocery stores were emptied of their hamburger and sauce before the night was over, and lined up a group of friends, family and neighbors who would become Decker's teachers.

Michalski traveled from Utah to conduct a three-day workshop to teach the teachers how to teach Decker.

Most of the group was stunned when Michalski began working with the boy, then 2 1/2, for the first time, and they saw what they were getting into.

“Decker did everything but pull a knife on Steve,” Holly Porter says. “He was biting and hitting and scratching and kicking, and the tantrum seemed to last for days.”

“To Will and I it was nothing we hadn't seen every day for a year,” Charlie says. “All the teachers were crying, but to us that day was a launching pad for getting our son back.”

Michalski delivered an important message that day to Decker's new battalion of teachers, which include Porter, Marge Coursen, RaLynn Brown, Joanne Ploskunak, Jody Jones and Lisa Jones-Park.

“Don't react to his behavior, stay neutral,” Coursen says. “Keep him in his chair working - if he's doing his ring-stacker, physically take his hand and make him keep putting rings on it.”

“He showed us all that we're battling autism, not Decker,” Charlie says.

The therapy demands a lot from the 3-year-old.

It lasts eight hours a day. A pair of three-hour sessions in the home-built classroom on the ranch are interrupted at midday by two hours in town at Ronan's Head Start program, which Charlie says has gone “above and beyond” to help.

Even when school's out, it's not, not really.

The same sort of exercises and routines from his daytime teachers continue on into the evenings, on weekends, every day of the year with his parents.

Charlie and Will had Decker into the classroom on Christmas Day, New Year's Eve.

“The autism doesn't take a day off,” Charlie explains, “so neither can we.”

But the progress has been stunning to them. Charlie says 40 percent to 50 percent of children diagnosed with autism, if in the right range on the spectrum chart and treated early enough with ABA, can recover huge amounts of their speech and social skills.

Consider the child jigsaw puzzles. When they first started working the puzzles, the puzzles were whole save for one piece that the teachers would remove and hand to Decker.

That's all he could handle just a few short months ago. One piece, and it took him as long to figure it out as it does to do an entire puzzle from scratch now.

The battery of teachers painstakingly charts how he did on each exercise, and how much time it took.

Once a week, they gather with Charlie for a two-hour session to plan out the coming week.

Michalski flies up from Utah every few weeks to read over the charts, work with Decker and offer directions for his therapy. His services cost $150 an hour plus expenses, and $75 for phone or e-mail communication from Utah.

But Charlie says Michalski never charges for conversations that last just a few minutes, or simple e-mails. He's fine with sleeping in the bunkhouse next door on her mother's property, and many of his flights have been covered by folks in the Mission Valley who have donated frequent-flier miles.

The Cotes' goal is for Decker to recover enough that they can enroll him in a regular kindergarten class by the time he's 6.

Their son's autism has been “quite possibly the biggest challenge we will face in our lifetimes,” Charlie and Will say.

But the puzzle is coming together.

Day by day, Decker Cote is emerging from a terrifying world not of his making.

Piece by piece, Will and Charlie are getting their son back.

Measure requires insurers to provide coverage for autism

By VINCE DEVLIN of the Missoulian

RONAN - Will and Charlie Cote thrust their plight - and that of their 3 1/2-year-old son, Decker - into the public eye last week, when they traveled to Helena to testify in favor of Senate Bill 234.

Sponsored by Sen. Kim Gillan, D-Billings, “Brandon's Bill” would require insurance companies to provide coverage for the diagnosis and treatment of autism.

Eight states - Arizona, Florida, Louisiana, Illinois, Indiana, Pennsylvania, South Carolina and Texas - have enacted autism insurance reform legislation, and Montana is one of several more considering similar bills during the current session.

According to Autism Speaks, a national organization that backs the legislation, most states do not require private insurance companies to cover even essential autism treatments and services.

“In the absence of coverage, families often pay as much as they can out of pocket for services that can cost upward of $50,000 per year,” Autism Speaks says. “In the process, many risk their homes and the educations of their unaffected children - essentially mortgaging their entire futures.”

To Charlie Cote, it makes no more sense than it would be to allow health insurance companies to refuse to pay for chemotherapy for a person covered by insurance and diagnosed with cancer.

“We're trying to save our son's life,” she says of the aggressive Applied Behavior Analysis approach they've elected to take with Decker (see accompanying story).

It costs the Cotes $4,000 to $5,000 a month.

“Decker,” she told the committee, “has begun a beautiful transformation. A year ago, he was in discontent 90 percent of his day. He would tantrum for hours on end. Decker went 18 months without sleeping a night through. When he was sleepless he was injuring himself by pulling his own hair out, biting through his own skin, choking and gagging himself to vomit multiple times in a matter of minutes. He lost all speech and all eye contact (and) withdrew into this unpredictable world.”

“These are not moments pulled from our darkest days,” Charlie went on. “This was every day. Our family changed. We became a family with autism.”

ABA, one of the treatments SB 234 would require insurance companies to cover, has made such a huge difference in the life of Decker and his family, Charlie says, that it's hard to put into words.

The Cotes are lucky, she says, to have family and friends and neighbors - really, the entire community of Ronan - to lean on for help in paying for and delivering to Decker the care he needs.

“When we were in Helena,” she says, “I couldn't help thinking what it would be like for a 19-year-old single mom to try to deal with what we're dealing with.”

SB 234 would require insurance companies to cover diagnosis, rehabilitative, pharmacy, psychiatric, psychological and therapeutic care and ABA treatments, up to $50,000 a year.

“We are in favor (of SB 234) not only for the benefit of our own son, but for every child that follows behind him,” Cote told legislators. “Unfortunately, there will be many. Let us as a state embrace them, and give them the treatment that they need and deserve.”

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