Sorry for not posting anything for a long time. Besides being swamped with work (for a residential facility hellbent on moving institutionalized individuals into the community; will get into this in another post), they updated their network servers which now block my ability to blog at work (the nerve, right??). It winds up being easier to post to the Beyond Autism Awareness Facebook page , or tweet links and stories on Twitter. Like the rest of you, I am usually too busy or tired after work to post anything of value, or more likely than not, life in general just gets in the way. But that’s commonplace for families on the Spectrum, so I know you understand.
Sooo, what’s new on this end? Well just a few things, really. Mike continued to learn new things in his Computer class given by the Nassau County PAL Special Needs Unit, and is continuing to make progress in school. He had a successful season with his Farmingdale Splash friends that culminated in winning 2 medals at a Special Olympics swim meet. He was really proud of himself, and of course, so were we.
He also had 2 of his drawings featured at the Long Island Children’s Museum, alongside some of his peers.
Last but not least, he wrote a short biographical piece that will be featured on The Golden Hat Foundation’s Blog page.
All in all, it’s been a really hectic year so far, and I hope it continues; every step regardless of how small is always a step forward.
Peace to you all. -Ed
Jonathan Brunot has competed in nine marathons.
STAATSBURG, N.Y. — Competing in nine marathons is a major accomplishment for any runner.
But imagine taking on that challenge while also being challenged as a person with autism.
Twenty-four year old Jonathan Brunot, a Dutchess County resident who is an adult consumer at the Anderson Center for Autism in Staatsburg, has done just that. Brunot, a young man who didn’t even like running until about six years ago, has become an inspiration and role model for other youngsters and adults dealing with the disorder.
“Jonathan came to us at Anderson about two years ago,” said Amanda Coons, a behavior analyst and Special Olympics coordinator at the center. “We are a very small part of his story. Jonathan just thoroughly enjoys running.”
Brunot was diagnosed with autism when he was 2 1/2 years old and has extremely limited verbal and comprehension skills, along with hyperactivity.
His mother, Olga, was the person who decided to get Brunot involved in running. About six years ago, she enrolled Brunot in the Rolling Thunder Special Needs Program in Long Island. The program helps special needs individuals take part in running, walking and wheelchair racing.
“His mother was the one who got him going,” Coons said. “She’s always been there to cheer him on and give him so much support. I’ve found her to be a wonderful woman and mother.”
At first, Brunot could not complete one lap on the track. His older brother, Verlaine, and his mother, did what they could to keep Brunot moving on the track when he seemed as though he didn’t want to. It was a meeting with Vincent Del-Cid, a running coach in New York City, that somehow sparked Brunot’s interest in running. In a three-mile run, with Del-Cid running alongside, Brunot finished without stopping.
After that experience, there appears to be no way to slow him down. “Jonathan is a big ball of energy,” said John DeLorenzo, another Special Olympics coordinator at Anderson. “His peers are in awe of what he does. He is breaking down barriers and opening doors.”
Brunot has lost about 25 pounds since he started running and now averages about 25-30 miles per week. His coaches in the city train with him and run alongside of him in every long distance race.
While the most common danger in running is either an injury or dealing with terrain or traffic, Brunot almost experienced a much more serious threat as a participant at this year’s Boston Marathon. “The time that the bomb at the finish line went off is very close to his normal time for a marathon,” Coons said. “Fortunately, his mother had made an arrangement with a news reporter to stop with Jonathan along the way and he was actually about 10 minutes away from finishing. If he hadn’t stopped, he and his family could have been at the finish. Jonathan doesn’t even know what happened.”
Brunot has become a celebrity of sorts at Anderson, especially as its track star. Because of his challenge, Brunot doesn’t have a competitive drive, never doubts himself and refuses to quit. “Our program (at Anderson) is one of the biggest in the state for Special Olympics,” DeLorenzo said. “Jonathan runs in a bunch of track events and this year, he plans to start swimming. He was voted as the Most Inspirational Athlete last year.”
At the recent Special Olympics Spring Games in West Point, Brunot got to run with the torch to kick off the opening ceremonies, surrounded by cadets from the United States Military Academy. “Every athlete is paired with a cadet and Jonathan’s was so impressed with his running and his spirit,” Coons said. “Watching him run at West Point was great,” DeLorenzo added. “His family was right there and their involvement in his life has been so important.”
Coons said Brunot is setting the bar for other athletes with emotional and developmental challenges.
“He makes running look so easy,” she said. “He doesn’t realize it, but he leads by his example. He is able to do such amazing things that the other guys can’t help but to be inspired by him.”
Click the link to view the video: http://swfs.bimvid.com/bimvid_player-3_2_7.swf?x-bim-callletters=WFAA
ARLINGTON – Crowds cheered loudly for Special Olympians in Arlington earlier this month.
They’re all overcoming challenges, but very few have beaten the challenge that teenager Briannah Buckley whipped, just to be able to sprint down the track.
And maybe no one has done it quite like she did.
As we first showed you in November, Briannah, who has autism, contracted a mysterious infection on her leg. Doctors couldn’t diagnose it, and couldn’t stop it.
“I felt like I was in a bad dream,” said her mother, Brandi Teplicek.
Doctors at Cook Children’s Medical Center removed more and more tissue, while trying to identify the relentless bug.
Infectious disease specialist Dr. Donald Murphey recalled frustration and desperation. He remembers thinking if the infection wasn’t contained, Briannah wouldn’t survive.
After weeks failures and experimental treatments, a lab in Seattle finally identified an extremely rare, fungus-like organism that sounds like a Harry Potter spell.
“Then we found out it was the pythius insidiosum, and tried medicines that worked best for that, and it still got worse,” Murphey said.
Doctors determined the only way to save her life was to take her leg.
Before surgery, she prayed for the team. The day after, she was already walking on crutches.
And when Briannah left the hospital, the staff cheered her on. They were all moved by her physical and emotional strength.
“She’s adapted to having a prosthetic leg better than anyone I’ve ever seen,” Murphey said.
He and Briannah’s parents believe her autism has acted as a shield. It’s only one remarkable aspect now making Briannah a medical case study.
“This is a very unusual case,” Murphey said. “There’s only a handful of cases of pythium infection of people in the U.S. She’s an important example of a very unusual infection.”
It’s believed the organism is contracted through water.
But only one case a year is usually reported in the U.S. Briannah’s story will make physicians more aware of it, and new high tech resources to diagnose it.
“Using molecular biology to find answers quickly to what microbe or organism has invaded our body,” Murphey explained.
Doctors narrowly won the race to save Briannah Buckley’s life.
Life force is more like it, as she showed at this month’s Special Olympics.
She jumped and cheered wildly after mounting the podium to receive her medals. She never even mentioned her new metal leg.
It was a beautiful Spring day at Connetquot HS today as we brought Mike to participate in the Special Olympics Spring Games. He is a member of the FREE Hurricanes; FREE is the parent organization for Mike’s socialization group Helping Hands Behavioral Outreach. Mike is determined to win a gold medal despite anything we tell him about ‘doing his best’ or that a silver or bronze is good too. This is Mike’s second year with the FREE Hurricanes; the team is coached by Steve, Melissa and Tim, who did a great job getting the team ready and enthusiastic to compete.
Mike participated in the Softball Throw
and the 50 Meter Dash
He earned a Silver medal in the Softball Throw and a Bronze in the Dash. He was a little disappointed that he didn’t win a Gold this year but rightfully earned a great deal of praise. He even saw his school gym teacher Patrick who also gave him a medal and promised to blast the Rock n’ Roll music in gym class tomorrow as a reward. I am proud of my young man. Proud that he participated, proud that he indeed did his best and most of all, proud of his Gold medal attitude. He even got to sit on a few big bikes.
Onward and upward!
You know it when you see it — that determined look, that extra mile or lap, that high-five jump, that pat on the back, that enormous smile. It’s the power of sports. For people with intellectual disabilities, Special Olympics is often the only place where they have an opportunity to participate in their communities, develop belief in themselves, and feel like champions. But for every inspiring Special Olympics athlete, there are many more waiting for their chance to shine.
Spring Games South
Location: Connetquot High School
Primary Contact: Tim Flynn, 631-254-1465, firstname.lastname@example.org
Details: Volunteer Registration
Student delivers speech to peers
“(Kids in school) said, ‘You’re a retard. You are,'” said David Thompson, a junior at Oregon High School. “And I said, ‘Excuse me?'”
Living with autism, Thompson said he has felt the pain of the “R” word too many times to stay quiet. It’s why he is urging his peers to “Spread the Word to End the Word.”
On Wednesday, Thompson gave a speech to several of his peers at school.
“I was nervous,” Thompson said of the speech. “I couldn’t sleep last night.”
“Five years ago, I would have never in a million years imagined that David would even consider doing something like this,” said his mother, Amy Verheyden. “He would come home from school and say, ‘Mom, somebody called me … ‘ and he would say the word.”
In his speech, Thompson told his fellow students that he wants a change at Oregon High School.
“I hear the ‘R’ word at least two times a day, and that needs to stop. And so I’m asking if you hear the ‘R’ word, and one of your friends says it, please tell them to stop it,” Thompson said. “And promise me that you will turn that ‘R’ word into Respect. That’s all I’m asking.”
Thompson’s speech was followed by applause from all who listened Wednesday.
“David gave a really great presentation,” said Natalie Sarcona, one of Thompson’s classmates. “Obviously, it’s a great message, and it means a lot to me because my sister has special needs.”
Thompson is an active member of Special Olympics, and he has traveled to Washington, D.C., on behalf of the organization.
- Copyright 2012 by Channel 3000. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
- Oregon teen urges peers to stop using ‘R’ word (channel3000.com)
Children with autism: Nothing for granted
(CNN) — Watching a child take his first steps is one of the biggest milestones for a parent.
Lindsay Williamson says the moment she heard her son, Reed, call his father “Daddy” instead of “juice box” was just as amazing.
He was a month shy of his third birthday, and the family had spent months in autism evaluations that Reed wouldn’t participate in.
“We were not sure we would ever hear ‘Daddy,'” said Williamson, whose family lives in Lewes, Delaware. “It meant so much to us.”
On World Autism Awareness Day, CNN iReport asked families affected by the developmental disorder to tell the world what their lives are like. Parents of children along the autism spectrum described incredible highs and lows: Desperation for answers about why autism rates are rising, fears about their children’s prospects in adulthood, but also great pride in watching them develop and overcome obstacles.
‘Never give up’
Early diagnosis and better access to treatments have helped families reach goals they weren’t sure were possible.
Lindsay Mansfield’s son, Travis, made little to no eye contact when he was diagnosed with autism in the first grade. Loud sounds frightened him. He would clap his hands and rock or jump up and down in crowded places.
It was draining for the family until they learned how his brain worked.
“We all began to learn the skills. It wasn’t just about him; it was also about us, the people who interacted with him,” Mansfield, of Queen Creek, Arizona, wrote in her iReport. “We all began to learn how to communicate through these situations. If something is loud, cover your ears. Too many people? Maybe there’s another way we can get through this store.”
To get through stressful homework sessions, she used blocks for addition and subtraction “so he could touch every one.”
Today, Travis is thriving in fourth grade. Mansfield said he has friends and sits at the dinner table and talks with his family.
“Never give up,” she said.
Waiting for ‘Mama’
Parents of children with autism say they learn to measure milestones differently. They appreciate the successes, however late they come.
Mothers of children with autism can wait years to hear their child say the words, “I love you, Mommy” — or even call them “Mommy,” said Lin Wessels, whose son, Sam, is 10.
“I remember distinctly the first time Sam said ‘Mama’ and he was actually meaning me. I started bawling,” she said.
Sam was about 3 years old at the time and had stopped speaking. He was learning to express himself using sign language and cards with pictures on them.
“That all helped Sam to realize that words have use — that by using them, something happens. It was just kind of a progression that ‘Oh, that’s Mom, and I can call her Mama and she will come.'”
Wessels, who lives in Rock Rapids, Iowa, felt another wave of pride last year when she saw Sam swinging in the backyard all by himself. Other children are able to learn how to swing just by watching others. Sam, who struggles with coordination, required years of therapy to be able to pump his legs while pushing and pulling the ropes, all while balancing his body on the seat.
“He was 9, and I started crying, because you don’t know if you’ll ever see your child do those things — things other children do when they’re 4,” she said. “Those kinds of things give you a lot of hope that there’s more to come.”
Milestones missed, dreams revised
Still, as hard as families try, some rites of passage are missed. Wessels says Sam still doesn’t have the coordination to ride a bicycle or play other sports, aside from Special Olympics once a year.
“It is not for lack of trying. We have tried the entire gamut of sports activities, but Sam just does not have the executive functioning skills, coordination or motor planning they require,” she said.
Crystal McCoy of Conway, Arkansas, said she had to accept the truth that her daughter “just doesn’t think like us.” Seven-year-old A’jaylin started hurting herself last year — picking scabs, then knocking her own teeth out — and was briefly placed in a mental hospital.
“We thought that if we did the right things she would be able to live a normal life,” McCoy wrote. “I used to dream of all the things she would be. Now my every hope or thought goes to whether she will hurt herself too bad, or if she will even live to that point and if she does if it will be in a hospital.”
Similarly, Luke Ferguson of Lebanon, Pennsylvania, said it was painful to revise the dreams he had for his little boy. His son, Sammy, is 6 and suffers from severe autism. He doesn’t speak, and still wears diapers.
“When he was one, I wanted to teach him how to play soccer and chess,” Ferguson said. “By the time he was three, I just wanted to be able to understand him when he is sad. The turning point … was for me to understand that my role is not to fix him but to love him.”
Even as she celebrates her son’s milestones — like calling his father “Daddy” — Lindsay Williamson often worries what will happen when Reed reaches adulthood. He is only 4, but group homes and other services for adults with autism are frequent topics of discussion in the parents group Williamson belongs to.
“Who will care for our kids when we are gone is a huge concern,” she said. “Who will be there to help them? Where will they live? What will they do?”
An estimated 500,000 children with autism will become adults in the next decade, and parents “have every right to be concerned,” said Peter Bell, executive vice president at Autism Speaks and father of a 19-year-old with autism.
Even adults with mild forms of autism face high unemployment rates because of social, communication and behavior problems, advocates say. A small study published in 2010, tracking 66 young adults after high school, found only 18 percent of them had jobs, and none were full-time. In some states, families have been waiting years for spots in group homes, vocational programs and other services.
“We know a lot more about autism today than we did 10 years ago, we continue to do much more research, and I think where we fail is in really providing appropriate services lifelong for individuals,” said Jim Ball, chairman of the Autism Society national board of directors.
The early diagnosis and therapies more prevalent than a couple decades ago appear to be improving that prognosis, but it’s not clear what percentage of the population will be able to live on their own, need 24-hour care or something in between.
Lin Wessels hopes that her son, Sam, will one day live on his own, find a meaningful career, maybe get married. She will never sell him short. She says she and her husband will continue to work with Sam as long as they live, advocate for more autism research and resources, and they give thanks to the parents who raised children with autism before her.
“The parents that went before us 20 and 30 years ago … a lot of times they were told, ‘Don’t have expectations, just plan on finding a permanent placement for your child.’ Now that kind of thinking is very backwards,” Wessels said. “Hopefully we’re blazing that trail even wider and bigger for the parents that follow, so there’s even more for their kids.
- Inspiring stories speaking for autism (nadiariell.com)