June 10th, 2010
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The Autism News | English
Jakob Crowe
Jakob Crowe
By Stephanie Bertholdo | The Acorn
Jakob Crowe may not have spoken his first word until he was 3 years old, but music certainly speaks to him.
Jakob is an 11-year-old musician who is making his mark at A.E. Wright Middle School in Calabasas as the youngest student to join the school’s jazz band and wind ensemble. He and his family live in Agoura Hills.
Diagnosed with autism at the age of 2, Jakob spent many years learning to talk.
While Jakob struggles with nuanced communication, he has no problem expressing an emotional range in his music, says his mother, Bonnie Weinstein-Crowe.
On June 5, Jakob and his band mates performed at Disneyland. He was also chosen as a finalist for A.E. Wright’s Director’s Award for his performance of Eugene Bozza’s “Aria.”
Weinstein-Crowe says that there are many misconceptions about what children with autism can and cannot achieve.
“My son did not talk until he was 3 years old, and then he barely spoke sentences for several years,” Weinstein-Crowe said. “When he was little, in fact, they told me they didn’t think he’d ever talk and would never have a normal life. Jakob has worked so hard over the years . . . and now he’s thriving at A.E. Wright.”
Jakob attends all mainstream classes at the school, is a straight-A student, made the honor roll this year and will participate in the gifted program next year, Weinstein-Crowe said.
“I credit not only my son’s determination and hard work but also music and the kindness and compassion of his band mates as the reason he’s thriving so.”
Weinstein-Crowe says that Jakob communicates best when spoken to in very concrete terms rather than being addressed by open-ended questions.
Ashley Suhr, the music teacher at the school, said she was amazed at the maturity and emotional depth of the solo Jakob performed.
“Jakob is a talented musician who is not afraid to take risks,” Suhr said. “He is a great improviser and loves playing solos in jazz band.” She added that Jakob is a focused musician “although he also loves to tell a good joke or share a funny story.”
Jakob said that music makes him “feel good.”
“I like to play music,” Jakob said. “I’m good, they tell me.”
Jakob’s musical talent started to become apparent at the age of 7 when he taught himself to read music. He started taking alto sax lessons two years ago.
Weinstein-Crowe said that the best way to raise awareness about autism and give parents hope that a child diagnosed with autism can thrive was to share her son’s story.
“The music thing has been a total godsend,” Weinstein-Crowe said. “Things were so hard before. . . . Jakob didn’t have friends. He was very quiet.” Jakob’s band mates, she said, are very protective of him and give him support during class and practice.
“They all pat him on the back and say ‘good job,’” WeinsteinCrowe said.
Children with autism often hyper-focus on different things, she said. The focus on music has been a great outlet for Jakob, but the perfectionism autistic children strive for can sometimes go too far.
“It can make life hard,” she said. “Most parents pressure their children (to focus) and do well. I have to do the opposite. Part of our job as a family is to tell (Jakob) it is okay to make a mistake. The stress level is high for autistic kids.”
To help reduce stress, Jakob has a therapy dog, a Shih Tzu named Cuddles that has a calming effect on him and provides him with a safe way to show affection. WeinsteinCrowe says that children with autism don’t have to worry about social rules with dogs.
Another misconception that Weinstein-Crowe wants to dispel is that autistic children don’t like to be touched. She said that while Jakob’s autism presents itself through social challenges, he has no issue with being hugged and is a “very smiley” child.
Besides his love of music Jakob participates on the Special Olympics golf team.
“So many parents out there will be getting the same diagnosis and grim words that I received back when Jakob was little,” WeinsteinCrowe said. “I just want others to know not to limit your child.
“He worked hard his whole life to fit in and to control the many challenges he’s had because he’s on the (autism) spectrum. It’s the kindness and understanding of others, that help him most in his quest to thrive and fit in.”
Source: http://www.theacorn.com/news/2010-06-10/Health_%28and%29_Wellness/11yearold_discovers_innate_talent.html
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The Autism News | English
By Dr. Sapna Parikh’s report | FOX 5 Health
WHAT CAUSES AUTISM?:: We’re still trying to figure out if autism is caused by genetics or by something in the environment. Scientists from around the world have just found dozens of autism-related genes. It is part of the international autism genome project. But they also found that it is more complex than first thought. Even the most common genetic changes were only in 1-percent of autism patients.
EARLY SCHOOL START DANGERS?: Starting high school classes earlier could lead to more car accidents among teenage drivers. This study out of Eastern Virginia Medical school compared school districts in two cities with different start times: one started at 7:20 a.m.; the other started at 8:40 a.m. Researchers say the school district with earlier start times had 90 percent more students involved in car crashes.
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Tim Stack goes over the 12 disciples with his son, John. 
Ann Stack gives her son, John, a reassuring touch on his arm during his Sunday school lesson. 
John Stack sings with his mother, Ann, while learning about Jesus to the tune of ‘Bingo.’ Tim and Ann Stack started a special needs Sunday school class at State Street Baptist Church in Cayce after looking for the right place to start one.
The Autism News | English
Tim Stack goes over the 12 disciples with his son, John.
By Carolyn Click | The State
For the moment, there is only one Sunday school pupil in Room 120 at State Street Baptist Church, a 19-year-old man who loves puzzles and songs and has painstakingly memorized the books of the Bible.
John Stack’s autism and halted mental development set him apart. But his parents, Tim and Ann Stack, don’t believe that should limit their son’s access to Sunday school and the spiritual lessons that have been so important to him through his life.
The Stacks have developed a class for teenagers and young adults like John Stack, people with special needs who require routine and repetition but who have “aged out” of traditional Sunday school classes.
They hope that soon John will have classmates joining him in Bible study.
“We had been thinking about this for several years,” Ann Stack said. “He really towered over the other children, because they were third- and fourth-graders. Mentally he fit, but physically he didn’t.”
John Stack always had enjoyed Sunday School and church. For years, a church volunteer, Kathy Collins, served as his “shadow,” attending classes with him and helping him follow the Bible lessons and craft instructions.
But the Stacks knew that John no longer belonged at the little tables.
“We just felt that it was time for him to move on, and there wasn’t another place for him to go,” his mother, a retired school teacher, said. “We wanted him to continue to grow spiritually and in the church, and we just didn’t see that that would happen there.”
The “A” Word
As a baby, John Stack developed normally until about 10 months of age, when he suffered a massive seizure.
He continued having small seizures, and at about 1 year of age was diagnosed with epilepsy, his parents said. At 18 months, his intellectual abilities started to slide.
“We went through all the available medications at that time,” Ann Stack said, “and that is how we got on the surgery track.”
Eventually, after examination at the Medical College of Georgia, Emory University and the Scripps Institute in California, John underwent the first of several surgeries at age 4 to remove parts of the brain that triggered the seizures.
Then, at age 6, doctors told the Stacks that John was autistic.
“It was the first time we had heard the ‘A’ word,” Ann Stack said.
They adjusted their lives — and their dreams — to accommodate their son’s needs, and worked to keep him at home.
“In 2001, he was so mentally unstable we didn’t know if we could keep him,” Ann Stack said. But eventually, their son’s physicians were able to prescribe medications that stabilized their son.
“We wouldn’t trade him for anything,” she said. “So many people have regrets and don’t live the life God gave them. We feel like that they are God’s gifts and we can learn from them.”
God as your next-door neighbor
The couple researched curriculum and attended special needs classes at congregations to prepare for the kind of class that would appeal to mentally and physically challenged young people like their son.
Several large congregations, including First Baptist Church in downtown Columbia, have developed such programs.
They attended classes at Mount Horeb United Methodist Church in Lexington, which not only offers a weekly Sunday school class but also a special needs Vacation Bible School and basketball league.
The Stacks also sought counsel from Steve Cannon, whose late father founded a successful special education class in 1967 at Spartanburg’s Bethel United Methodist Church. Jack Cannon developed the class because his daughter, Suzanne, was mentally and physically challenged, his son said.
“We have been going strong for 42 years,” said Cannon, who took over as director of the class after his father’s death in 1996. The Spartanburg class averages about 30 to 35 students weekly, all mentally challenged and some autistic. It has been an ecumenical outreach, Steve Cannon said, drawing Episcopalians, Presbyterians, Greek Orthodox and Mormons among the membership.
“You don’t know exactly what gets in their heads,” Cannon said. “You have to present God as if he was your next-door neighbor.”
He predicted that once word spreads about the Stacks’ class, families will avail themselves of the spiritual opportunity.
“If they build it, they will come,” he said.
The Stacks already knew that repetition and routine worked for John in his daily life, and they were determined to keep that orderly approach as they worked on their lesson plans, just as Cannon and others recommended.
“We really copied a lot of his format,” said Tim Stack. “You really can’t go deep. You have to stay on the surface.”
God and family
On a recent Sunday, the lesson came from 1 Timothy 5:4: “But if any widow has children or children’s children, let these see that it is right to take care of their family and their fathers and mothers: for this is pleasing in the eyes of God.”
For special needs students, that Biblical complexity is reduced to one simple phrase: “Take care of your family.”
But first, John participated in his every Sunday routine: singing “America the Beautiful,” and reciting three pledges: the Pledge of Allegiance, the Christian Pledge of Allegiance, and the Pledge to the Bible. He then recited familiar Bible verses including John 3:16 and Psalm 23 and sang some favorite songs.
John followed along on a television set linked to a computer. Cayce police officer Tim Shealy, a member of the State Street congregation, arranged for the donation of the equipment from a Cayce civic club.
John then read a simple version of the Old Testament story of Joseph, who reunited with and forgave the brothers who sold him into slavery in Egypt.
Tim Stack asked simple questions to make sure John understands the story: “Where did Joseph live?” “How can we show that we love and care for our family?”
And this: “Who is in your family?”
John looked from one parent to the other: “Mommy, Daddy and John.”
After a prayer, the lesson ended right on time, and John prepared for his snack.
But not before he turned and hugged his mother.
Ann Stack gives her son, John, a reassuring touch on his arm during his Sunday school lesson.
John Stack sings with his mother, Ann, while learning about Jesus to the tune of ‘Bingo.’ Tim and Ann Stack started a special needs Sunday school class at State Street Baptist Church in Cayce after looking for the right place to start one.
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The Autism News | English
By Marshall Griffin | St. Louis Public Radio
Missouri Governor Jay Nixon will sign the autism insurance bill into law Thursday in St. Louis.
Passing an autism bill was a top priority this year for the Democratic governor and for lawmakers from both parties. It provides up to $40,000 a year in coverage for kids with autism age 18 and younger.
State Senator Eric Schmitt (R, Glendale) has a 5-year-old son with autism.
“These therapies can really be the difference between a child having meaningful relationships with other kids…being invited to a birthday party, a mom being able to take her daughter to a movie theater, a dad being able to take his son to a ball game, or a family being able to go out to a restaurant without having to leave after 15 minutes,” Schmitt said.
Starting January 1st, insurance companies in Missouri will be required to cover Applied Behavioral Analysis, a therapy that has a successful track record but can also cost tens of thousands of dollars. State Representative Dwight Scharnhorst (R, Valley Park) sponsored the bill in the House.
“I’ve had families visit my office that have actually maxed out credit cards, paying household expenses and day-to-day things in order to provide the educational and medical treatment that their children (with autism) need,” Scharnhorst said.
Scharnhorst added that the $40,000 in coverage will be adjusted annually for inflation.
Small business owners will be allowed to opt out if they can prove that providing autism insurance coverage causes their premiums to rise more than 2.5 percent a year.
Nixon will first sign the bill at a ceremony in St. Louis at 10 a.m., followed by ceremonies in Springfield and Columbia. Two more are scheduled for Friday in Kansas City and Joplin. A sixth ceremony is tentatively planned for next week in Cape Girardeau.
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