Hikers with autism, Down syndrome mark trail with memorable moments.
Hiking 800 feet above the azure sea off South Laguna, Louis Wallace turns around at the sound of his name and stops.
"Hey Louis, wait up," leader Anthony Palmeri shouts.
"You're a strong hiker," I yell ahead while standing next to Palmeri, a 25-year-old Mission Viejo resident and graduate of the University of California, Irvine.
Wallace grins.
"Yes I am," he hollers back, raising clenched fists in the air and striking a pose that would make a body builder proud.
It's an honest and beautiful moment in a hike filled with honest, beautiful moments. It's Saturday morning, and Palmeri has invited me along one of his weekly hikes with three young men he has come to know through his job as a special education aide at Tesoro High School in South Orange County.
Today, we're on one of Palmeri's favorite outdoor gems, a wide path called Laguna Ridge Trail that starts at Badlands Park and offers a continuous feed of magnificent views of the coast from Monarch Point.
As we head south, we pass a series of large homes on the left that hug the ridgeline high above Pacific Island Drive. On our right, there is a drop-off that could make lesser men turn to jelly. But the hikers we're with have nerves of steel. They also happen to have what some call special needs. Wallace has Down syndrome.
Andrew Dennison is next to me. His eyes sparkle like the ocean below us, and an easy smile lights up his face. A sturdy 20-year-old, his hands flutter from his stomach to his mouth and to his nose. Then they make the journey again.
Dennison, who lives with his parents in Coto de Caza and is in adult transition at Saddleback College, doesn't seem to say much. But I hardly notice. His happy countenance communicates everything.
As Wallace, 18, saunters back toward the group, Palmeri pauses to share a story of a recent trip to Las Vegas with Dennison's family. As a surprise present for Dennison's mom, Palmeri, one of Dennison's siblings and Dennison had "Happy" – "Birthday" – "Mom" hennaed across their three stomachs to look like tattoos.
Dennison punctuates the story by lifting his shirt to show off the "Mom" on his belly. He points to the nearly faded letters and beams.
Blake Bernardin, 16, is just behind. Like Dennison, Bernardin has autism and says little, but he's careful to stay with the group. I clap the Tesoro High School student on the back for being a solid outdoorsman. A tiny smile betrays his secret pride.
We start down a steep rocky trail that forks off from the groomed path.
"Which way should we choose?" I ask Wallace, a Rancho Santa Margarita resident. He studies the terrain. There is a stream of rocks in the middle. On the right, it's relatively clear save for scattered pebbles. On the left, sharp rocks poke through the ground.
"Over there," Wallace says, pointing left.
I'm impressed. Many people would have taken the path to the right – where the pebbles might as well be marbles. Buried rocks offer solid footing.
For the first few minutes of our hike, I wasn't sure how to talk around the young men. Then I remembered my days teaching Down kids to swim. Be yourself.
We make our way down the trail, holding one another's hands so we don't slip. The young men handle the sketchy section with calm and grace.
As we head back, the breeze dies down and the temperature picks up. We've been hiking more than an hour and everyone is a little sweaty, something which Bernardin mentions with some frequency.
"Try my drink, half water, half Gatorade," I offer.
Bernardin downs half the bottle It's a good reminder we all get a little cranky when we're dehydrated.
After the hike, I talk to the guys' parents. Raising any child is hard work, and these men and women, along with aides like Palmeri, are heroes in my book.
Roseann Bernardin of Trabuco Canyon shares that her son, Blake, loves swimming and riding his beach cruiser bicycle. Still, he struggles with fine motor skills and is only able to write his name.
I inquire about a scar that runs the length of her son's back and discover this teenager who navigated the tricky trail had a 45-degree curvature of the spine until an operation for scoliosis just a few years ago. Doctors inserted 23 screws and two rods. I wonder how I would have done hiking with that much metal.
Dennison's mother, Joni, reports Andrew, like most sons, loves playing video games, eating and riding four-wheel all-terrain "quads."
I mention Andrew didn't talk much during the hike, though clearly he had a great time. I'm a little stunned at what she says next.
"At 28 months, he went into his own world and stopped talking. He doesn't talk."
Reflecting back on the hike, I realize Dennison never said a word and I hadn't noticed.
His heart said it all.
David Whiting's column on people and places appears Tuesdays. He can be reached at 714-796-6869 or dwhiting@ocregister.com
Tuesday, August 4, 2009
Monday, March 9, 2009
Harbingers of Autism
Sharon Begley
The tragedy of autism is compounded by one fact that makes desperate parents wish they could turn back the hands of time: symptoms of the neurodevelopmental disorder typically show up when a child is 2 or 3 or even older, but by then it may be too late to prevent or reverse whatever glitches in brain development (still pretty much a mystery) underlie the disease. It is even on the late side for getting a child the behavioral interventions and special education that might mitigate some of the worst symptoms.
If scientists at the M.I.N.D. Institute of the University of California, Davis, are right, however, there may be a reliable warning sign of autism much earlier: how a child plays with his or her toys at the tender age of 12 months. In particular, scientists led by Sally Ozonoff will report in the journal Autism (it’s the October issue, but not out yet; keep checking the web site), children who were later diagnosed with autism were more likely to spin, repetitively rotate, stare at and look out of the corners of their eyes at toys such as a rattle.
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There is a big research effort aimed at picking up the earliest harbingers of autism. One of the most promising discoveries came in 2003, when researchers led by neuroscientist Eric Courchesne of the University of California, San Diego, concluded that an odd pattern of skull growth might be a tip to autism, as they described in a paper in the Journal of the American Medical Association. Children with autism, the scientists found, had a smaller head circumference at birth than healthy babies, and by 6 to 14 months their head circumference was in the 84th percentile, a huge increase and greater than the rate of increase in healthy children. “The clinical onset of autism appears to be preceded by 2 phases of brain growth abnormality: a reduced head size at birth and a sudden and excessive increase in head size between 1 to 2 months and 6 to 14 months,” the scientists wrote. “Abnormally accelerated rate of growth may serve as an early warning signal of risk for autism.” Still, the correlation wasn’t perfect: 6% of healthy infants in the study also showed abnormal head growth from birth to 6 to 14 months, and 41% of babies later diagnosed as autistic did not show that pattern.
The American Academy of Pediatrics recommends that all infants be screened for autism twice before they are 2. Pediatricians look for language delays and lack of interest in people, such as not responding to their name and failing to make eye contact. But these can be present even when autism is not. The latest findings are not perfect either, but they are something parents can watch for every day rather than relying on—and waiting for—a short visit to the doctor. “There is an urgent need to develop measures that can pick up early signs of autism, signs present before 24 months,” Ozonoff says. “The finding that the unusual use of toys is also present early in life means that this behavior could easily be added to a parent check-list.”
For the study, Ozonoff recruited 66 1-year-olds; 9 were later diagnosed with autism. The children were given a metal lid, a round plastic ring, a rattle and a baby bottle, one at a time for 30 seconds each while being videotaped. Seven of the 9 later diagnosed with autism were more likely to repeatedly spin and rotate the objects. They were also more likely to look at them in unusual ways, like glancing sideways at them or staring intently at them for a long time—behaviors that were rare in babies not later diagnosed with autism. “About a third of parents notice signs [of autism] before a child’s first birthday,” Ozonoff said. “We felt that our field could do a better job at early diagnosis. Our results suggest that these particular behaviors might be useful to include in screening tests. The earlier you treat a child for autism, the more of an impact you can have on that child’s future.”
The tragedy of autism is compounded by one fact that makes desperate parents wish they could turn back the hands of time: symptoms of the neurodevelopmental disorder typically show up when a child is 2 or 3 or even older, but by then it may be too late to prevent or reverse whatever glitches in brain development (still pretty much a mystery) underlie the disease. It is even on the late side for getting a child the behavioral interventions and special education that might mitigate some of the worst symptoms.
If scientists at the M.I.N.D. Institute of the University of California, Davis, are right, however, there may be a reliable warning sign of autism much earlier: how a child plays with his or her toys at the tender age of 12 months. In particular, scientists led by Sally Ozonoff will report in the journal Autism (it’s the October issue, but not out yet; keep checking the web site), children who were later diagnosed with autism were more likely to spin, repetitively rotate, stare at and look out of the corners of their eyes at toys such as a rattle.
Advertisement
There is a big research effort aimed at picking up the earliest harbingers of autism. One of the most promising discoveries came in 2003, when researchers led by neuroscientist Eric Courchesne of the University of California, San Diego, concluded that an odd pattern of skull growth might be a tip to autism, as they described in a paper in the Journal of the American Medical Association. Children with autism, the scientists found, had a smaller head circumference at birth than healthy babies, and by 6 to 14 months their head circumference was in the 84th percentile, a huge increase and greater than the rate of increase in healthy children. “The clinical onset of autism appears to be preceded by 2 phases of brain growth abnormality: a reduced head size at birth and a sudden and excessive increase in head size between 1 to 2 months and 6 to 14 months,” the scientists wrote. “Abnormally accelerated rate of growth may serve as an early warning signal of risk for autism.” Still, the correlation wasn’t perfect: 6% of healthy infants in the study also showed abnormal head growth from birth to 6 to 14 months, and 41% of babies later diagnosed as autistic did not show that pattern.
The American Academy of Pediatrics recommends that all infants be screened for autism twice before they are 2. Pediatricians look for language delays and lack of interest in people, such as not responding to their name and failing to make eye contact. But these can be present even when autism is not. The latest findings are not perfect either, but they are something parents can watch for every day rather than relying on—and waiting for—a short visit to the doctor. “There is an urgent need to develop measures that can pick up early signs of autism, signs present before 24 months,” Ozonoff says. “The finding that the unusual use of toys is also present early in life means that this behavior could easily be added to a parent check-list.”
For the study, Ozonoff recruited 66 1-year-olds; 9 were later diagnosed with autism. The children were given a metal lid, a round plastic ring, a rattle and a baby bottle, one at a time for 30 seconds each while being videotaped. Seven of the 9 later diagnosed with autism were more likely to repeatedly spin and rotate the objects. They were also more likely to look at them in unusual ways, like glancing sideways at them or staring intently at them for a long time—behaviors that were rare in babies not later diagnosed with autism. “About a third of parents notice signs [of autism] before a child’s first birthday,” Ozonoff said. “We felt that our field could do a better job at early diagnosis. Our results suggest that these particular behaviors might be useful to include in screening tests. The earlier you treat a child for autism, the more of an impact you can have on that child’s future.”
Monday, March 2, 2009
The Vaccine Dilemma: Many families, some fearing autism risk, choose to avoid children's immunizations
After Jayden Naughton lost his speech when he was 2 and was diagnosed with autism, his mother, Megan, made a crucial decision.
When the Avalon woman gave birth to her second son, Duncan, two years ago, she decided he would not be vaccinated, because she believed vaccinations might have had something to do with Jayden's regression.
Duncan is now 2, has never had a vaccination, and also has been diagnosed with autism.
Some might say that this suggests his autism has a genetic cause, but Mrs. Naughton doesn't buy it. In fact, she fears that starting to vaccinate him now could make his symptoms worse. And she's not particularly worried about him getting sick from the diseases the vaccines protect against.
"My grandparents had a lot of these diseases and they're fine," she said last week. "I think these childhood diseases are there for a reason. They're there to build up the immune system."
Whether you agree with her or not, Mrs. Naughton is part of a small but growing subset of parents who either won't vaccinate their children or want to space out their shots. Most of them believe there may be a connection between the vaccines and autism, despite a growing list of scientific studies that contend otherwise.
Even if they aren't worried about autism, some parents are bothered by what they see as an increasing assault on babies' immune systems.
"We do vaccinate, but they do scare me," one mother wrote on the Pittsburghmom.com Web site, which is owned by the Pittsburgh Post-Gazette. "[It's] not necessarily because of autism but just because they get so many of them now and I just wonder if they truly know that they are safe."
While many pediatricians and infectious disease experts feel that doctors should stand their ground in the face of such fears, there is an increasing number of doctors who are willing to accommodate these parents.
Tony Kovatch is one of them. Dr. Kovatch, of the Pediatric Alliance's Arcadia office in McCandless, doesn't agree with avoiding vaccinations altogether, and doesn't know any other pediatricians who do. But he is willing to delay certain vaccinations.
Under the standard schedule promulgated by the federal Centers for Disease Control and Prevention, children can get up to 27 doses of 14 different vaccines before they are 2. They often get up to six shots per visit.
Melinda Wharton, acting director of the immunization safety office at the CDC, said she sees no medical or scientific rationale for spacing out those inoculations.
But Dr. Kovatch responded that "I also don't see any biomedical justification for having to give so many all in one day." He said he believes the schedule was set up "to work into the template of the pediatric well-child visits at 2 months and 4 months and 6 months. But I think the anxiety and concerns of the well-informed public have trumped the convenience on the timing."
One physician who disagrees is Andrew Nowalk, an infectious disease specialist at Children's Hospital of Pittsburgh.
"One of the reasons we are so hot on the vaccination schedule as it is, is that otherwise, you can put your child at risk for some of these diseases, many of which are quite serious. My response to parents who say 'what's the harm in spacing them out' is that many of these diseases are quite devastating."
While they don't see eye to eye on the vaccination schedule, Dr. Kovatch and Dr. Nowalk do agree that some of the diseases the vaccines protect against are more of a threat than others.
Before age 1 children should get the diphtheria-pertussis-tetanus shot and those for haemophilus influenzae B (also known as Hib) and pneumococcal infections, Dr. Kovatch said.
The Hib and pneumococcal vaccines are designed to guard against bacterial meningitis, which used to infect 18,000 children in the United States each year and kill 1,000 of them in the era before the vaccines were available, Dr. Nowalk said.
The pertussis vaccine protects against whooping cough, which has not been eradicated in the United States. Before scientists developed a pertussis vaccine for older children in 2005, there were about 10 to 20 deaths from whooping cough in the country annually, and most were in young children, the CDC's Dr. Wharton said.
For those vaccines, Dr. Kovatch said, he will sometimes suggest to parents who are concerned about the frequency of immunizations that they come into the office more often, and get one vaccine each month rather than three at a time.
He's willing to delay past age 1 the hepatitis B vaccine and the polio vaccine, especially if the family isn't planning overseas travel.
Some doctors follow the schedule advocated by Dr. Bob Sears, a California pediatrician and author of "The Vaccine Book -- Making the Right Decision for your Child."
In his "selective schedule," Dr. Sears never gives more than two vaccinations per visit and delays vaccinations for measles, mumps, rubella, chickenpox and hepatitis A until age 10, and then only if a child's blood tests show a lack of immunity to these diseases.
Spacing out vaccines, he wrote in an e-mail, "allows parents who would otherwise refuse all vaccines to get their babies protected, and helps protect our nation as a whole by raising vaccination rates among worried parents."
Dr. Wharton said she is not a fan of spacing out immunizations, but isn't unalterably opposed.
The problem, she said, is that if too many parents avoid or delay vaccinations, it can allow clusters of childhood diseases to erupt. Outbreaks of measles in the Southwest last year and of haemophilus infections in Minnesota this year were both traced in part to families with unvaccinated children.
Underlying the vaccine delay is the idea that the current schedule puts too much stress on children's immune systems.
But Dr. Wharton offered two arguments against that.
First, she said, children's immune systems are exposed to far more challenges from daily living than they are from all the vaccinations combined.
Second, even though children get far more vaccinations today than they did 40 years ago, they are exposed to far fewer substances in those vaccines that trigger an immune reaction.
The particles in vaccines that build up immunity are called antigens. A 2002 study in the Journal Pediatrics said that the 11 vaccines children were getting in 2000 contained 123 to 126 antigens, while the five that children got in 1960 -- smallpox, diphtheria, tetanus, pertussis and polio -- contained 3,217 antigens.
The major reason for the huge decrease was eliminating the smallpox vaccine from the schedule after that disease was eradicated (it contained 200 antigens), and devising a new pertussis vaccine that dropped the antigen count from 3,000 to about five.
Tricia Baum, of Canonsburg, the mother of a 5-year-old son with autism, said she had not heard that information before -- but it still doesn't change her suspicion that vaccines may have triggered her son's condition.
When she took Nicholas for his 16-month doctor's visit, she said, he was sick and fussy, "and I asked whether he should get his shots, but the doctor checked his ears, and then he said, 'I'm his physician and we're going to go ahead with his vaccinations today and we're going to give him his flu shot as well.' "
She said Nicholas had been developing normally until then, except for a delay in his vocabulary, but not long after that visit, he began to lose what words he had and retreat into himself.
Ms. Baum recently switched to a pediatrician who agreed to measure Nicholas' blood antibody levels before deciding whether to give him a measle-mumps-rubella booster.
Nicholas hasn't had any booster shots yet, she said, and won't as long as his antibody measurements stay high enough.
Elliot Frank, who has a teenage son diagnosed with Asperger's syndrome, is the chairman of local support group ABOARD -- Advisory Board on Autism and Related Disorders.
Although he doesn't believe vaccines cause autism, he knows many families in his organization who do, and he understands the emotions that are driving that idea. "We talk to our parents about how you can't blame yourself for what has happened, but I think it's human nature that you've got to blame something, because you had this image of what your child would grow up to be and at a very young age it's taken away from you, and you've got to blame somebody for life being that unfair."
Dr. Nowalk, who has a child with Down syndrome, understands that as well, but said, he can't abandon his principles as a doctor over the vaccine issue.
"I know they work because I've seen them in my lifetime as a physician protect children against diseases. And they are safe."
When the Avalon woman gave birth to her second son, Duncan, two years ago, she decided he would not be vaccinated, because she believed vaccinations might have had something to do with Jayden's regression.
Duncan is now 2, has never had a vaccination, and also has been diagnosed with autism.
Some might say that this suggests his autism has a genetic cause, but Mrs. Naughton doesn't buy it. In fact, she fears that starting to vaccinate him now could make his symptoms worse. And she's not particularly worried about him getting sick from the diseases the vaccines protect against.
"My grandparents had a lot of these diseases and they're fine," she said last week. "I think these childhood diseases are there for a reason. They're there to build up the immune system."
Whether you agree with her or not, Mrs. Naughton is part of a small but growing subset of parents who either won't vaccinate their children or want to space out their shots. Most of them believe there may be a connection between the vaccines and autism, despite a growing list of scientific studies that contend otherwise.
Even if they aren't worried about autism, some parents are bothered by what they see as an increasing assault on babies' immune systems.
"We do vaccinate, but they do scare me," one mother wrote on the Pittsburghmom.com Web site, which is owned by the Pittsburgh Post-Gazette. "[It's] not necessarily because of autism but just because they get so many of them now and I just wonder if they truly know that they are safe."
While many pediatricians and infectious disease experts feel that doctors should stand their ground in the face of such fears, there is an increasing number of doctors who are willing to accommodate these parents.
Tony Kovatch is one of them. Dr. Kovatch, of the Pediatric Alliance's Arcadia office in McCandless, doesn't agree with avoiding vaccinations altogether, and doesn't know any other pediatricians who do. But he is willing to delay certain vaccinations.
Under the standard schedule promulgated by the federal Centers for Disease Control and Prevention, children can get up to 27 doses of 14 different vaccines before they are 2. They often get up to six shots per visit.
Melinda Wharton, acting director of the immunization safety office at the CDC, said she sees no medical or scientific rationale for spacing out those inoculations.
But Dr. Kovatch responded that "I also don't see any biomedical justification for having to give so many all in one day." He said he believes the schedule was set up "to work into the template of the pediatric well-child visits at 2 months and 4 months and 6 months. But I think the anxiety and concerns of the well-informed public have trumped the convenience on the timing."
One physician who disagrees is Andrew Nowalk, an infectious disease specialist at Children's Hospital of Pittsburgh.
"One of the reasons we are so hot on the vaccination schedule as it is, is that otherwise, you can put your child at risk for some of these diseases, many of which are quite serious. My response to parents who say 'what's the harm in spacing them out' is that many of these diseases are quite devastating."
While they don't see eye to eye on the vaccination schedule, Dr. Kovatch and Dr. Nowalk do agree that some of the diseases the vaccines protect against are more of a threat than others.
Before age 1 children should get the diphtheria-pertussis-tetanus shot and those for haemophilus influenzae B (also known as Hib) and pneumococcal infections, Dr. Kovatch said.
The Hib and pneumococcal vaccines are designed to guard against bacterial meningitis, which used to infect 18,000 children in the United States each year and kill 1,000 of them in the era before the vaccines were available, Dr. Nowalk said.
The pertussis vaccine protects against whooping cough, which has not been eradicated in the United States. Before scientists developed a pertussis vaccine for older children in 2005, there were about 10 to 20 deaths from whooping cough in the country annually, and most were in young children, the CDC's Dr. Wharton said.
For those vaccines, Dr. Kovatch said, he will sometimes suggest to parents who are concerned about the frequency of immunizations that they come into the office more often, and get one vaccine each month rather than three at a time.
He's willing to delay past age 1 the hepatitis B vaccine and the polio vaccine, especially if the family isn't planning overseas travel.
Some doctors follow the schedule advocated by Dr. Bob Sears, a California pediatrician and author of "The Vaccine Book -- Making the Right Decision for your Child."
In his "selective schedule," Dr. Sears never gives more than two vaccinations per visit and delays vaccinations for measles, mumps, rubella, chickenpox and hepatitis A until age 10, and then only if a child's blood tests show a lack of immunity to these diseases.
Spacing out vaccines, he wrote in an e-mail, "allows parents who would otherwise refuse all vaccines to get their babies protected, and helps protect our nation as a whole by raising vaccination rates among worried parents."
Dr. Wharton said she is not a fan of spacing out immunizations, but isn't unalterably opposed.
The problem, she said, is that if too many parents avoid or delay vaccinations, it can allow clusters of childhood diseases to erupt. Outbreaks of measles in the Southwest last year and of haemophilus infections in Minnesota this year were both traced in part to families with unvaccinated children.
Underlying the vaccine delay is the idea that the current schedule puts too much stress on children's immune systems.
But Dr. Wharton offered two arguments against that.
First, she said, children's immune systems are exposed to far more challenges from daily living than they are from all the vaccinations combined.
Second, even though children get far more vaccinations today than they did 40 years ago, they are exposed to far fewer substances in those vaccines that trigger an immune reaction.
The particles in vaccines that build up immunity are called antigens. A 2002 study in the Journal Pediatrics said that the 11 vaccines children were getting in 2000 contained 123 to 126 antigens, while the five that children got in 1960 -- smallpox, diphtheria, tetanus, pertussis and polio -- contained 3,217 antigens.
The major reason for the huge decrease was eliminating the smallpox vaccine from the schedule after that disease was eradicated (it contained 200 antigens), and devising a new pertussis vaccine that dropped the antigen count from 3,000 to about five.
Tricia Baum, of Canonsburg, the mother of a 5-year-old son with autism, said she had not heard that information before -- but it still doesn't change her suspicion that vaccines may have triggered her son's condition.
When she took Nicholas for his 16-month doctor's visit, she said, he was sick and fussy, "and I asked whether he should get his shots, but the doctor checked his ears, and then he said, 'I'm his physician and we're going to go ahead with his vaccinations today and we're going to give him his flu shot as well.' "
She said Nicholas had been developing normally until then, except for a delay in his vocabulary, but not long after that visit, he began to lose what words he had and retreat into himself.
Ms. Baum recently switched to a pediatrician who agreed to measure Nicholas' blood antibody levels before deciding whether to give him a measle-mumps-rubella booster.
Nicholas hasn't had any booster shots yet, she said, and won't as long as his antibody measurements stay high enough.
Elliot Frank, who has a teenage son diagnosed with Asperger's syndrome, is the chairman of local support group ABOARD -- Advisory Board on Autism and Related Disorders.
Although he doesn't believe vaccines cause autism, he knows many families in his organization who do, and he understands the emotions that are driving that idea. "We talk to our parents about how you can't blame yourself for what has happened, but I think it's human nature that you've got to blame something, because you had this image of what your child would grow up to be and at a very young age it's taken away from you, and you've got to blame somebody for life being that unfair."
Dr. Nowalk, who has a child with Down syndrome, understands that as well, but said, he can't abandon his principles as a doctor over the vaccine issue.
"I know they work because I've seen them in my lifetime as a physician protect children against diseases. And they are safe."
Friday, February 27, 2009
What a Hit: Port Resident Has Kids With Autism Coming Up Winners
Port Washingtonian, John Crawley, left his architectural job last year to help his son Patrick who was diagnosed with autism. It was a daunting task, but if anyone knows how to take a project and run with it, it's Crawley. An avid sportsman and former quarterback, Crawley needed to find ways to get Patrick to connect with the outside world better and learn to work with others. Crawley used his own background and instead of designing buildings he designed a sports program for autistic kids.
"It's the most rewarding project I've ever embraced. I can't tell you what it's like to finally see your child connect with others and realize they are part of a team outside of themselves," said Crawley.
Through his effort and determination, the Children's Athletic Enrichment CAE was born. Its mission: allow each child to become what he or she is capable of. The key with this program is that it has been developed and run by educational professionals and certified ABA (applied behavioral analysis) therapists who work with kids with autism on a daily basis. Each child has different needs and therefore, Crawley says the professionals evaluate every child and work with them individually to learn a sport. Each child's progress is documented with charts and graphs and is integrated into the child's existing academic and behavioral program in school.
As with anything in Crawley's hands, this program has taken off and has already won awards for innovation. At least seven major universities in the United States have validated the program. It is on track to become a model for sports programs for kids with autism. Clinical psychologist, Molly Algermissen, PH.D. Columbia University, has worked with Crawley and has recommended the CAE program. "It provides a unique combination of occupational therapy, ABA training and social skills development in a natural environment for maximum therapeutic benefit," said Algermissen.
"The main difference with what we do with kids with autism is that we put them in a team setting outdoors so they are forced to socialize and have partners. Other outdoor programs generally provide individualized athletics such as horseback riding or surfing," said Crawley. "Kids with autism love to be by themselves. This program forces them to be in a group setting, which will make mainstreaming in school easier," said Crawley.
The program is only in its second year and it has met with rounds of success from children, parents and educational professionals. The children have been offered baseball/softball, soccer, swimming and the newest sport, gymnastics just started this year.
Sheila Bluni of Port Washington signed up her 6-year-old son as soon as she heard about the CAE program. Gavin has attended every sport that has been offered.
"I'm so glad this program is right here in our town. Our son, Gavin loves the CAE programs!" said Sheila Bluni of Port Washington. "He has participated in every program the CAE has offered and we are constantly amazed at the professionalism and educational value of the program, not to mention the fun! Gavin is a visual learner. The coaches give him detailed pictures of the sport so he can see exactly what he's supposed to do, how to hold the bat, where to run, etc. I also feel they really understand Gavin and encourage him to meet his full potential. Now Gavin likes to play baseball at home and loves to hit home runs with his siblings!" said Bluni.
Bluni says she will continue to sign up Gavin for more CAE sports-including baseball, swimming and soccer.
The program is offered for boys and girls ages 4 to 8. Crawley is a volunteer, but the educators are all paid and certified and include master's level: adaptive phys ed. teachers, occupational and physical therapists and ABA therapists. Sports uses gross motor skills and so the CAE program is recognized for complementing the therapeutic benefits of the academic programs for these children. Each child takes home an individualized book, which include PECS - picture exchange communication system, a visual explanation of the sport. The book also shows real pictures of the child playing the sport and interacting as a team member. They have color-coded uniforms so they can identify team members.
It is so exciting to me that we have so many kids who want to be in the program said Crawley. Only 18 kids are accepted per program and they have to fall within the autistic spectrum. The cost is $300 per kid per 6-week session. CAE raises money to supplement the fees that go above that. If a child can't afford it, Crawley works with the parents. In fact, Crawley says half of the kids receive some sort of scholarship funding. As a grassroots, not-for-profit organization, CAE has caught the eye of many service organizations, like the Lions Club, who want to help. In 2008, the International Lions Club organization awarded Crawley with the Most Innovative Program Award. Local businesses have also taken an interest in the program. Senator Craig Johnson, Port SEPTA, The Rexford Group, PW Water Pollution Control District, Port Washington Tennis Academy. LaCorte's Family Auto, recently held a fundraiser and donated all the funds directly to the program.
The next program, baseball, starts in April. Sheila Bluni and her son Gavin will be first in line to sign up!
"It's the most rewarding project I've ever embraced. I can't tell you what it's like to finally see your child connect with others and realize they are part of a team outside of themselves," said Crawley.
Through his effort and determination, the Children's Athletic Enrichment CAE was born. Its mission: allow each child to become what he or she is capable of. The key with this program is that it has been developed and run by educational professionals and certified ABA (applied behavioral analysis) therapists who work with kids with autism on a daily basis. Each child has different needs and therefore, Crawley says the professionals evaluate every child and work with them individually to learn a sport. Each child's progress is documented with charts and graphs and is integrated into the child's existing academic and behavioral program in school.
As with anything in Crawley's hands, this program has taken off and has already won awards for innovation. At least seven major universities in the United States have validated the program. It is on track to become a model for sports programs for kids with autism. Clinical psychologist, Molly Algermissen, PH.D. Columbia University, has worked with Crawley and has recommended the CAE program. "It provides a unique combination of occupational therapy, ABA training and social skills development in a natural environment for maximum therapeutic benefit," said Algermissen.
"The main difference with what we do with kids with autism is that we put them in a team setting outdoors so they are forced to socialize and have partners. Other outdoor programs generally provide individualized athletics such as horseback riding or surfing," said Crawley. "Kids with autism love to be by themselves. This program forces them to be in a group setting, which will make mainstreaming in school easier," said Crawley.
The program is only in its second year and it has met with rounds of success from children, parents and educational professionals. The children have been offered baseball/softball, soccer, swimming and the newest sport, gymnastics just started this year.
Sheila Bluni of Port Washington signed up her 6-year-old son as soon as she heard about the CAE program. Gavin has attended every sport that has been offered.
"I'm so glad this program is right here in our town. Our son, Gavin loves the CAE programs!" said Sheila Bluni of Port Washington. "He has participated in every program the CAE has offered and we are constantly amazed at the professionalism and educational value of the program, not to mention the fun! Gavin is a visual learner. The coaches give him detailed pictures of the sport so he can see exactly what he's supposed to do, how to hold the bat, where to run, etc. I also feel they really understand Gavin and encourage him to meet his full potential. Now Gavin likes to play baseball at home and loves to hit home runs with his siblings!" said Bluni.
Bluni says she will continue to sign up Gavin for more CAE sports-including baseball, swimming and soccer.
The program is offered for boys and girls ages 4 to 8. Crawley is a volunteer, but the educators are all paid and certified and include master's level: adaptive phys ed. teachers, occupational and physical therapists and ABA therapists. Sports uses gross motor skills and so the CAE program is recognized for complementing the therapeutic benefits of the academic programs for these children. Each child takes home an individualized book, which include PECS - picture exchange communication system, a visual explanation of the sport. The book also shows real pictures of the child playing the sport and interacting as a team member. They have color-coded uniforms so they can identify team members.
It is so exciting to me that we have so many kids who want to be in the program said Crawley. Only 18 kids are accepted per program and they have to fall within the autistic spectrum. The cost is $300 per kid per 6-week session. CAE raises money to supplement the fees that go above that. If a child can't afford it, Crawley works with the parents. In fact, Crawley says half of the kids receive some sort of scholarship funding. As a grassroots, not-for-profit organization, CAE has caught the eye of many service organizations, like the Lions Club, who want to help. In 2008, the International Lions Club organization awarded Crawley with the Most Innovative Program Award. Local businesses have also taken an interest in the program. Senator Craig Johnson, Port SEPTA, The Rexford Group, PW Water Pollution Control District, Port Washington Tennis Academy. LaCorte's Family Auto, recently held a fundraiser and donated all the funds directly to the program.
The next program, baseball, starts in April. Sheila Bluni and her son Gavin will be first in line to sign up!
Wednesday, February 25, 2009
Couple Lives With Autism, Comfort of Each Other
Love Bloomed After Socializing Was Learned
By THEA TRACHTENBERG and LINDSAY GOLDWERT
Feb. 25, 2009
David Hamrick, 29, and Lindsey Nebeker, 27, look like a typical couple in love, but what's not apparent is how hard they've worked to be together.
A couple finds a connection despite both having autism.
Hamrick and Nebeker live together in a Jackson, Miss., apartment, yet they have separate bedrooms, eat meals apart and spend most of their time focused on their own interests.
This unusual setup is how Hamrick and Nebeker, who are both autistic, make their relationship work.
About 1.5 million people in the United States have autism, with varying degrees of severity. Many people with autism struggle with the most basic social interactions, so finding love may seem like an impossibility.
Hamrick and Nebeker are high-functioning but, since childhood, both have found it difficult to make friends and even harder to keep them.
"All of her socialization had to be learned, usually by hard experience," said Nebeker's father, Gordon Nebeker.
By THEA TRACHTENBERG and LINDSAY GOLDWERT
Feb. 25, 2009
David Hamrick, 29, and Lindsey Nebeker, 27, look like a typical couple in love, but what's not apparent is how hard they've worked to be together.
A couple finds a connection despite both having autism.
Hamrick and Nebeker live together in a Jackson, Miss., apartment, yet they have separate bedrooms, eat meals apart and spend most of their time focused on their own interests.
This unusual setup is how Hamrick and Nebeker, who are both autistic, make their relationship work.
About 1.5 million people in the United States have autism, with varying degrees of severity. Many people with autism struggle with the most basic social interactions, so finding love may seem like an impossibility.
Hamrick and Nebeker are high-functioning but, since childhood, both have found it difficult to make friends and even harder to keep them.
"All of her socialization had to be learned, usually by hard experience," said Nebeker's father, Gordon Nebeker.
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