This is the 500th post of the Wheeling Around Phoenixville blog. Not bad for a blog that started last October, a blog i write alone.
I've thought about adding ads and earning a few bucks from the site, but no. Ads on other blog sites are annoying. I'm not this site has enough traffic to warrant ads. I like it the way it is.
So, I'm not sure who is reading this. Hopefully someone is out there. It's fun to write and I rarely am symped for a topic. Even if no one is reading this, I still still enjoy it. It allows me to express myself and hopefully inform.
Here are the different departments that make up the blog:
* In The News- I get most of the material from the informative web site Disability Scoop. They are heavy on autism topics, but they have the best articles about anything disability, from accessibility to disabled rights to what's in the news every day.
*In My Life- What's happening in my world, my opinions, the quirks of life, reviews of music, movies, plays, concerts, TV shows, you name it. Makes the blog a little more realatable.
* Philly Sports Corner- My views on all things Philly sports.
* Phillies Phodder- All about the Phillies
* Chirping Birds- All about the Eagles.
* Six Shooters- A new category about Sixers basketball.
* Old-Time Wheeling- Reprinting the collection of articles I wrote for The Phoenix between 2004-2007, about 70 in total. The articles focus on disability issues and highlights special person in our world.
* Sports Quiz- I'm a trivia fan, so this topic is fun to write. In honor of the upcoming school year, I'll be writing more trivia and quizzes on a broader scope than just sports.
Just some of the things on the blog. It ry to keep it light and fun. It's not the final word on disability or in sports. It's simply a way to get the information out to people and offer topics for discussion.
Any questions or comments? Please email me at Gapsmith1@verizon.net Let me know if you read the blog daily and what topics are your favorites. Thanks for reading it!
Let's go for 1,000 posts!
Thursday, August 17, 2017
Wednesday, August 16, 2017
PHILLY SPORTS CORNER
Random thoughts on Philly sports...
* Good for Rhys Hoskins. Being forced to play left field ( his natural position is first base) only three days before being called up to the majors, then being thrust into the clean-up spot in the line-up, Hoskins blasted his third home run in two games last night vs. San Diego ( another loss).
Fans are asking, why wasn't Hoskins called up sooner? Because, GM Matt Klentak is a jerk. He has no plan for the organization, no plan for the young players. He is winging it.
Needless to say, if manager Pete Mackanin is fried at the end of the year ( and he probably will), then Klentak needs to go too. I can't think of one thing he has done right, from trades to free agent signings to the way he has handled the club.
If Andy MacFailure and John Middleton have any guts they will show Klentak the door and monitor his "exit velocity." I can't picture this guy taking the Phils to a championship, let along make trades or even picking prospects in next year's draft.
The organization is at a crossroads. Do we really trust Matt Klentak to do the right things?
* Iw ould love to see Hoskins, Alfaro, Williams and others do well for the rest of the season, if only to prove so-called "experts" in the media, such as Marcus Hayes, Todd Zelecki and Kevin Cooney ( all shills for the Phillies' organization) are total idiots.
Most of the media have surprisingly sided with Klentak in his moves. Only media members such as Angelo Cataldi and Howard Eskin have been honest not to kiss the Phillies' asses.
* I pick the Eagles to go 10-6 this season, but i'd be lying if I said that coach Doug Pederson doesn't worry me. I like his aggressiveness but it's one thing to be aggressive and another to be stupid. When it comes to the big stage and a critical call id warranted, will he choke, like in the Cowboy game last season in Dallas?
I also didn't like the way Pederson defended his questionable moves afterwards, even when the media, fans, everyone knew he screwed up. Even after the fact, it was like he didn't at least learn from the stupidity.
I also don't like his play-calling at times. He tends to get too cute instead of sticking with what works and using his personnel wisely. Such as, the Birds went out and got RB LaGarret Blount to get the tough, 3rd down short yardage and goal line situations. In the first pre-season game against Green Bay Pederson tried to out-smart himself and not use Blount in those short-yardage downs.
Why even get Blount if your'e not gong to use him in those situations? it makes no sense.
Speaking of running, I also fear QB Carson Wentz is going to throw the ball 40 times a game again. The eagles need a consistent running game to eat up the clock, maintiain ball control and take the heat off Wentz. That all comes down to Pederson.
So while I believe the team is improved and should be competitive in the division, when the lights turn on during the big games, I see Pederson shriveling up and not being able to meet the challenge. I hope I'm wrong.
* I still can't believe the Sixers don't seem to have a policy regarding accessible seating. The Phillies and Eagles are awesome when it comes to accessibility and making sure disabled fans are comfortable and get their tickets without hassle. The Flyers have a different policy but still re very accommodating.
Not so the Sixers. Seems like the organization is sort of clumsy with all the increased volume of interest in the team. It's a business, which I get, but by the same token it's not right to rip the fans off, the same fans who suffered a long time with a team that sucked and an organization that was trying to lose on purpose.
* I see Tommy Joseph as being traded after the season. He's still only 26 and n average player, but in the right package, a team should be willing to take him on. He has no place on the Phils if Hoskins blossoms as expected.
Freddy Galvis has played a lot of baseball the last two seasons. He may be wearing down a bit, as he is slumping. Ina few weeks, if not sooner, prospect J.P. Crawford should be up.We know what we have in Freddie, a tremendous defender, an average bat with surprising pop, and a leader on the field and off as well.
What don't know what we have yet in Crawford,a t one time the franchise's prized prospect. Time to bring him up in September and see what he can do for a few weeks. Time to look forward to 2018 and beyond.
Unfortunately Scott Kingery isn't in the same boat. Because of service years issues, the Phillies probably won't promote him until spring training or even next May. Hopefully he forces their hand and comes up sooner then May.
Dylan Cozens, the Bash brother with Hoskins, should be called up. true, his average is low and he stills trikes out a ton, but isn't this the time to see what he can do? What do you have to lose?
I see Cozens hitting titanic homers at Citizens Bank Park, giving the fans something to watch and a home run hitter we haven't seen in ages (since Ryan Howard).
* Five Sports Personalities in Philly I Really Like:
1 .Carson Wentz
2 .Joel Embiid
3. Pete Mackanin
4 .Brett Brown
5 .Howie Roseman
Five Sports Personalities in Philly I Really Dislike:
1 .Matt Klentak
2. Odubel Hherrera
3. Joshua Harris
4. Dave Hackstol
5 .Doug Pederson
Five Philly Sports Media guys I Really Like:
1 .Ray Didinger
2. Angelo Cataldi
3.Howard Eskin
4 .Ricky Bottalico
5. ( Tie).Seth Joyner, Larry Andersen, John Kruk
Five Philly Sports Media Guys I Really Dislike:
1 .Marcus Hayes
2 .Kevin Cooney
3.Todd Zelecki
4 .Sam Donnellin
5..Big Daddy Graham
* Good for Rhys Hoskins. Being forced to play left field ( his natural position is first base) only three days before being called up to the majors, then being thrust into the clean-up spot in the line-up, Hoskins blasted his third home run in two games last night vs. San Diego ( another loss).
Fans are asking, why wasn't Hoskins called up sooner? Because, GM Matt Klentak is a jerk. He has no plan for the organization, no plan for the young players. He is winging it.
Needless to say, if manager Pete Mackanin is fried at the end of the year ( and he probably will), then Klentak needs to go too. I can't think of one thing he has done right, from trades to free agent signings to the way he has handled the club.
If Andy MacFailure and John Middleton have any guts they will show Klentak the door and monitor his "exit velocity." I can't picture this guy taking the Phils to a championship, let along make trades or even picking prospects in next year's draft.
The organization is at a crossroads. Do we really trust Matt Klentak to do the right things?
* Iw ould love to see Hoskins, Alfaro, Williams and others do well for the rest of the season, if only to prove so-called "experts" in the media, such as Marcus Hayes, Todd Zelecki and Kevin Cooney ( all shills for the Phillies' organization) are total idiots.
Most of the media have surprisingly sided with Klentak in his moves. Only media members such as Angelo Cataldi and Howard Eskin have been honest not to kiss the Phillies' asses.
* I pick the Eagles to go 10-6 this season, but i'd be lying if I said that coach Doug Pederson doesn't worry me. I like his aggressiveness but it's one thing to be aggressive and another to be stupid. When it comes to the big stage and a critical call id warranted, will he choke, like in the Cowboy game last season in Dallas?
I also didn't like the way Pederson defended his questionable moves afterwards, even when the media, fans, everyone knew he screwed up. Even after the fact, it was like he didn't at least learn from the stupidity.
I also don't like his play-calling at times. He tends to get too cute instead of sticking with what works and using his personnel wisely. Such as, the Birds went out and got RB LaGarret Blount to get the tough, 3rd down short yardage and goal line situations. In the first pre-season game against Green Bay Pederson tried to out-smart himself and not use Blount in those short-yardage downs.
Why even get Blount if your'e not gong to use him in those situations? it makes no sense.
Speaking of running, I also fear QB Carson Wentz is going to throw the ball 40 times a game again. The eagles need a consistent running game to eat up the clock, maintiain ball control and take the heat off Wentz. That all comes down to Pederson.
So while I believe the team is improved and should be competitive in the division, when the lights turn on during the big games, I see Pederson shriveling up and not being able to meet the challenge. I hope I'm wrong.
* I still can't believe the Sixers don't seem to have a policy regarding accessible seating. The Phillies and Eagles are awesome when it comes to accessibility and making sure disabled fans are comfortable and get their tickets without hassle. The Flyers have a different policy but still re very accommodating.
Not so the Sixers. Seems like the organization is sort of clumsy with all the increased volume of interest in the team. It's a business, which I get, but by the same token it's not right to rip the fans off, the same fans who suffered a long time with a team that sucked and an organization that was trying to lose on purpose.
* I see Tommy Joseph as being traded after the season. He's still only 26 and n average player, but in the right package, a team should be willing to take him on. He has no place on the Phils if Hoskins blossoms as expected.
Freddy Galvis has played a lot of baseball the last two seasons. He may be wearing down a bit, as he is slumping. Ina few weeks, if not sooner, prospect J.P. Crawford should be up.We know what we have in Freddie, a tremendous defender, an average bat with surprising pop, and a leader on the field and off as well.
What don't know what we have yet in Crawford,a t one time the franchise's prized prospect. Time to bring him up in September and see what he can do for a few weeks. Time to look forward to 2018 and beyond.
Unfortunately Scott Kingery isn't in the same boat. Because of service years issues, the Phillies probably won't promote him until spring training or even next May. Hopefully he forces their hand and comes up sooner then May.
Dylan Cozens, the Bash brother with Hoskins, should be called up. true, his average is low and he stills trikes out a ton, but isn't this the time to see what he can do? What do you have to lose?
I see Cozens hitting titanic homers at Citizens Bank Park, giving the fans something to watch and a home run hitter we haven't seen in ages (since Ryan Howard).
* Five Sports Personalities in Philly I Really Like:
1 .Carson Wentz
2 .Joel Embiid
3. Pete Mackanin
4 .Brett Brown
5 .Howie Roseman
Five Sports Personalities in Philly I Really Dislike:
1 .Matt Klentak
2. Odubel Hherrera
3. Joshua Harris
4. Dave Hackstol
5 .Doug Pederson
Five Philly Sports Media guys I Really Like:
1 .Ray Didinger
2. Angelo Cataldi
3.Howard Eskin
4 .Ricky Bottalico
5. ( Tie).Seth Joyner, Larry Andersen, John Kruk
Five Philly Sports Media Guys I Really Dislike:
1 .Marcus Hayes
2 .Kevin Cooney
3.Todd Zelecki
4 .Sam Donnellin
5..Big Daddy Graham
SPORTS QUIZ
OLD-TIME BASEBALL is the topic of today's Sports Quiz..
1. What member of the Cincinnati Reds became, in 1977, the first major league player in more than a decade to slam more than 50 homers?
2. What was Bob Gibson's ERA in 1968?
3. Who combined with Hank Aaron and Dave Johnson to give the Atlanta Braves three 40-plus home run hitters in 1973?
4. What two brothers pitched for the Chicago Cubs in 1975?
5. Who was the first Little Leaguer to make it to the major leagues?
6. How many no-hitters did yogi Berra and Roy Campanella each catch?
7. How many World Series home runs did Willie Mays hit?
98. What was the first team Casey Stengel managed, in 1934?
9. How many hits did Ted Williams crack on the 1941 season's final day for a .406 average?
10. Who was the only man in uniform in the parks to witness both Roger Maris's 61st season home run and Hank Aaron's 715th career blow?
ANSWERS-
1. George Foster
2. 1.12
3. Darrell Evans
4. Paul and Rick Reuschel
5. Joey Jay
6. Three
7. Zero
8. Brooklyn Dodgers
9. Six
10. Al Downing
IN THE NEWS- BOOK CLUB DOESN'T LET DISABILITY GET IN THE WAY
The Columbus Dispatch offers the following article..
His body and brain work differently now. Bothwere severely injured when Bob Boddorf, riding a bicycle after drinking heavily, crossed paths with a dump truck.
Boddorf describes the accident matter-of-factly, referring to the nearly fatal experience a decade ago as "what happened to me before book club." He considers the time at hand- Boddorf and his fellow book-club members have gathered for their regular Thursday evening meeting- a cherished part of his salvation.
"It has helped me integrate myself back into society," he said.
Boddorf belongs to Next Chapter Book Club, a network of community-based book clubs for adults and adolescents with Down syndrome, autism, cerebral palsy and other intellectual and developmental disabilities.
Next Chapter was founded in 2002 by Tom Fish, of the Ohio State University Nisonger Center on Disabilities, who was looking for new ways for people with disabilities to take part in community and social activities. The idea has since blossomed beyond all expectation: Clubs are now thriving in 34 states and four countries, and the organization recently celebrated its 15th anniversary.
The naysayers, Fish said with a grin, were all wrong. "People didn't think people with disabilities could read, didn't think they would be interested," he said. "We always say.'This is more about reading to learn than learning to read.'"
Franklin County alone has more than 25 Next Chapter clubs, which vary widely by age, disability and reading level. Two volunteer facilitators help guide the discussions, while members- most groups have four to eight- take turns reading aloud. No one sweats the occasional stumble or mispronounced word.
"We're not going to criticize." said 18-year-old Zach Wemlinger, the youngest member of the next Chapter club meeting. Boddorf is the oldest in the club at 50.
"We're a very accepting group. " said Wemlinger, whose 24-year-old brother, Kevin, is in the same club. "We don't judge."
Nichele Lyndes, a social worker, has been volunteering with Next Chapter for the past seven years. The weekly meetings have become as much a part of her heart as her schedule.
"Honestly, I see some of them more than I do my closest friends, " she said. "very few things have remained the same in my life since 2010, but that's the one consistent thing that's always been there- my Thursday nights."
For those with disabilities, positive and reliable social events can be tough to come by, Lyndes said "Some don't do a lot outisde of this. We try to make it as social as possible."
The club that Lyndes and volunteer Ashlee Phillips coordinate has enthusiastic readers with a fondness for dystopian fiction. because many of their book selections also are movies, the group sometimes goes to the cinema or to a member's house to watch a DVD.
That's been a pretty big deal for Bobiann. Bidwell, 20, who had never gone out to a movie until she joined her book-club friends. The notion of a dark theater with loud, unexpected noise, scared her.
"I conquered my fear!" she said.
Last year, the National Book Foundation gave its Innovations in Reading Prize to Next Chapter Book Club. The honor still feels extra sweet, Fish said, because "it's not a disability award. It's a book award."
He thinks much of the success is rooted in the program's warm, easy style. 'This is real low-cost stuff, and it's real simple stuff," Fish said. "It's letting people be equals. Like on 'Cheers'- everybody wants to go where people know their name."
His body and brain work differently now. Bothwere severely injured when Bob Boddorf, riding a bicycle after drinking heavily, crossed paths with a dump truck.
Boddorf describes the accident matter-of-factly, referring to the nearly fatal experience a decade ago as "what happened to me before book club." He considers the time at hand- Boddorf and his fellow book-club members have gathered for their regular Thursday evening meeting- a cherished part of his salvation.
"It has helped me integrate myself back into society," he said.
Boddorf belongs to Next Chapter Book Club, a network of community-based book clubs for adults and adolescents with Down syndrome, autism, cerebral palsy and other intellectual and developmental disabilities.
Next Chapter was founded in 2002 by Tom Fish, of the Ohio State University Nisonger Center on Disabilities, who was looking for new ways for people with disabilities to take part in community and social activities. The idea has since blossomed beyond all expectation: Clubs are now thriving in 34 states and four countries, and the organization recently celebrated its 15th anniversary.
The naysayers, Fish said with a grin, were all wrong. "People didn't think people with disabilities could read, didn't think they would be interested," he said. "We always say.'This is more about reading to learn than learning to read.'"
Franklin County alone has more than 25 Next Chapter clubs, which vary widely by age, disability and reading level. Two volunteer facilitators help guide the discussions, while members- most groups have four to eight- take turns reading aloud. No one sweats the occasional stumble or mispronounced word.
"We're not going to criticize." said 18-year-old Zach Wemlinger, the youngest member of the next Chapter club meeting. Boddorf is the oldest in the club at 50.
"We're a very accepting group. " said Wemlinger, whose 24-year-old brother, Kevin, is in the same club. "We don't judge."
Nichele Lyndes, a social worker, has been volunteering with Next Chapter for the past seven years. The weekly meetings have become as much a part of her heart as her schedule.
"Honestly, I see some of them more than I do my closest friends, " she said. "very few things have remained the same in my life since 2010, but that's the one consistent thing that's always been there- my Thursday nights."
For those with disabilities, positive and reliable social events can be tough to come by, Lyndes said "Some don't do a lot outisde of this. We try to make it as social as possible."
The club that Lyndes and volunteer Ashlee Phillips coordinate has enthusiastic readers with a fondness for dystopian fiction. because many of their book selections also are movies, the group sometimes goes to the cinema or to a member's house to watch a DVD.
That's been a pretty big deal for Bobiann. Bidwell, 20, who had never gone out to a movie until she joined her book-club friends. The notion of a dark theater with loud, unexpected noise, scared her.
"I conquered my fear!" she said.
Last year, the National Book Foundation gave its Innovations in Reading Prize to Next Chapter Book Club. The honor still feels extra sweet, Fish said, because "it's not a disability award. It's a book award."
He thinks much of the success is rooted in the program's warm, easy style. 'This is real low-cost stuff, and it's real simple stuff," Fish said. "It's letting people be equals. Like on 'Cheers'- everybody wants to go where people know their name."
Tuesday, August 15, 2017
IN THE NEWS- HOTEL LOOKS TO MAKE STAYS EASIER FOR GUESTS WITH SPECIAL NEEDS
From The Orange County Register...
On top of the usual baggage for four, the Behuras pack extra things for 10-year-old Maximilian.
Special food, east-to-use plates and utensils, medication, iPads and tablets, light-up toys, an oversized stroller.
Traveling with a child with autism can be real tough, but the Yorba Linda, Calif. family refuses to miss out on vacations.
For years, Alexander Behura, 17, has helped his parents plan ahead for trips with Max, who has autism. From this brotherly love grew a major Anaheim hotel's desire to help those like the Behura family.
Max has soft eyes and the gangly arms of a young boy tll for his age. He's friendly and energetic. he likes to hold and be held; often clutching someone's arm in a friendly manner., even a stranger's.
Alexander is a straight-A student who speaks four languages. He plans to be a cardiovascular doctor. Born with a congenital heart disease, Alexander has a five- inch scar like a zipper on his chest. He's had two open-heart surgeries and a third is expected.
They play video games together, old games such as Mega Man and Super Mario Bros. Max calls him Dada, Bengali for older brother.
Some nights when Max has a hard time falling asleep, he sneaks into Alexander's room and boinks his brother on the head with his own before plopping on top of Alexander and falling asleep.
"I don't really mind it," Alexander said. "He only does it to the people he loves. Max likes to hold onto someone."
last year, while the family stayed at the Sheraton in Palo Alto, Calif.scouting colleges, Max ran out of diapers. he wanted to swim, too, but Alexander and his parents didn't know where they could buy diapers and a swim vest.
And that's when an idea struck Alexander: 'Wouldn't it be great, rather than having to pack up all this stuff, if the hotel had these items?"
It was a wish from experience, from more than 30 family trips around the world, dealing with Max's extra luggage and a lack of understanding by others.
In China, Alexander typed a letter with a few phrases in Mandarin about his brother's condition that his parents carried around to offer explanations.
At a tour stop in Norway, Max threw a mini-fit; Alexander held his brother's hand to calm him, but two women spoke ill of Max's behavior in Italian. Alexander and his parents turned around and- in Italian- explained Max's condition.
'After 7,000 times you see it, or hear it, and come to expect it, but it still hurts," Alexander said. "I've grown numb to it. I expect them to not know what it is."
Oftentimes, said the brothers' mom, Sylvia, "Families like us don't want to travel."
Karry Landauer, executive director of the Regional center of Orange County, a nonprofit providing services and support for individuals with developmental disabilities including autism, said traveling does present special challenges for many on the autism spectrum and their loved ones because of unpredictability.
At home, many live a life based on a regimented routine.
"Sensory challenges and extreme hypersensitivitiy can be magnified in new environments, and special diets that many follow can be difficult for families to really relax and enjoy a vacation."
But the Behuras push on, on the road.
'We love tot ravel and see it as a learning experience for our children," said Sylvia Behura, a math teacher.
Still, Alexander thought, traveling should be easier.
"You could tell, it's something he was already thinking about it," said Alexander's dad. Nathaniel, president of an engineering consulting firm. "We encourage him to write letters."
The letter took months. it wasn't so much a letter, but an audacious business proposal to create an autism awareness and support program. The teenager sent his five-page misisve to autism organizations, airlines, cruise ships, elected officials.
He wait, for months.
One organization said it was too bold. A congressman wrote back the office didn't support individual causes. others didn't bother to reply.
Alexander persisted.
With his parents' help, he shortened the letter and focused on a hotel near Disneyland- a popular destination for families with children with autism.
"It's so rare to receive a personalized letter, something that you can hold, a supposed to something you just read on a screen," said ian Gee, general manager of the Sheraton Park Hotel. "There was a lot of detail and passion in the letter. He presented his family and the challenges his family faces and how they overcame them. But what I liked about it was it wasn't a complaint; he offered suggestions."
gee invited Alexander and his father in to present the ideas. Gee liked what he heard. He asked Alexander to make a presentation to Sheraton Park's managers.
"it was intimidating," Alexander said. "They were all wearing suits."
They liked what they heard, too.
"I did not realize how prevalent autism is, how it affects people in different ways, and never thought how it impacts their travel plans," Gee said. "The staff wholeheartedly embraced it."
So over the last six months, Gee and his staff worked with Alexander and his family to make changes. The hotel spent about $8,000.
A behavioral therapist was brought in to train the staff. The hotel's restaurant menu added gluten-and casein-free offerings and was stocked with special adaptive plates, utensils and sippy cups.
The front desk now offers, for free, iPads and tablets,a weighed vest and exercise balls. In the gift shop, adult diapers, swim diapers, floaties and other supplies are available for purchase.
Prior to checking in, the hotel surveys families with children with autism for their needs and room preference. Accommodations are made so they don't wait in long lines. The hotel also offers oversized stroller rentals and a sitting service that specializes in autism spectrum disorder care for parents who want a date night.
Drew A. Nguyen, CEO of Behavior Functions, a company specializing in behavioral therapy and training for autism and special needs, said he hasn't seen a program like this at a hotel before. Nguyen, who estimates nearly 3.5 million people in the country live with an autism spectrum disorder, was brought in to train the staff.
"These families face so many barriers, either staff not understanding autism or (viewing it as) a stigma. Some don't go out at all," Nguyen said of the families. "This is really a big project, and we ar ehoping this program can allw many of these families to go out into the community and be in a comfortable area and enjoy life and make memories."
Gee said if the pilot program is successful in Anaheim, Sheraton's parent company, Marriott, may implement it in more of its hotels.
"I did this for my brother," Alexander said.
The program is called Member of Autism Care Services. For short, the hotel employees call it the MAX program.
On top of the usual baggage for four, the Behuras pack extra things for 10-year-old Maximilian.
Special food, east-to-use plates and utensils, medication, iPads and tablets, light-up toys, an oversized stroller.
Traveling with a child with autism can be real tough, but the Yorba Linda, Calif. family refuses to miss out on vacations.
For years, Alexander Behura, 17, has helped his parents plan ahead for trips with Max, who has autism. From this brotherly love grew a major Anaheim hotel's desire to help those like the Behura family.
Max has soft eyes and the gangly arms of a young boy tll for his age. He's friendly and energetic. he likes to hold and be held; often clutching someone's arm in a friendly manner., even a stranger's.
Alexander is a straight-A student who speaks four languages. He plans to be a cardiovascular doctor. Born with a congenital heart disease, Alexander has a five- inch scar like a zipper on his chest. He's had two open-heart surgeries and a third is expected.
They play video games together, old games such as Mega Man and Super Mario Bros. Max calls him Dada, Bengali for older brother.
Some nights when Max has a hard time falling asleep, he sneaks into Alexander's room and boinks his brother on the head with his own before plopping on top of Alexander and falling asleep.
"I don't really mind it," Alexander said. "He only does it to the people he loves. Max likes to hold onto someone."
last year, while the family stayed at the Sheraton in Palo Alto, Calif.scouting colleges, Max ran out of diapers. he wanted to swim, too, but Alexander and his parents didn't know where they could buy diapers and a swim vest.
And that's when an idea struck Alexander: 'Wouldn't it be great, rather than having to pack up all this stuff, if the hotel had these items?"
It was a wish from experience, from more than 30 family trips around the world, dealing with Max's extra luggage and a lack of understanding by others.
In China, Alexander typed a letter with a few phrases in Mandarin about his brother's condition that his parents carried around to offer explanations.
At a tour stop in Norway, Max threw a mini-fit; Alexander held his brother's hand to calm him, but two women spoke ill of Max's behavior in Italian. Alexander and his parents turned around and- in Italian- explained Max's condition.
'After 7,000 times you see it, or hear it, and come to expect it, but it still hurts," Alexander said. "I've grown numb to it. I expect them to not know what it is."
Oftentimes, said the brothers' mom, Sylvia, "Families like us don't want to travel."
Karry Landauer, executive director of the Regional center of Orange County, a nonprofit providing services and support for individuals with developmental disabilities including autism, said traveling does present special challenges for many on the autism spectrum and their loved ones because of unpredictability.
At home, many live a life based on a regimented routine.
"Sensory challenges and extreme hypersensitivitiy can be magnified in new environments, and special diets that many follow can be difficult for families to really relax and enjoy a vacation."
But the Behuras push on, on the road.
'We love tot ravel and see it as a learning experience for our children," said Sylvia Behura, a math teacher.
Still, Alexander thought, traveling should be easier.
"You could tell, it's something he was already thinking about it," said Alexander's dad. Nathaniel, president of an engineering consulting firm. "We encourage him to write letters."
The letter took months. it wasn't so much a letter, but an audacious business proposal to create an autism awareness and support program. The teenager sent his five-page misisve to autism organizations, airlines, cruise ships, elected officials.
He wait, for months.
One organization said it was too bold. A congressman wrote back the office didn't support individual causes. others didn't bother to reply.
Alexander persisted.
With his parents' help, he shortened the letter and focused on a hotel near Disneyland- a popular destination for families with children with autism.
"It's so rare to receive a personalized letter, something that you can hold, a supposed to something you just read on a screen," said ian Gee, general manager of the Sheraton Park Hotel. "There was a lot of detail and passion in the letter. He presented his family and the challenges his family faces and how they overcame them. But what I liked about it was it wasn't a complaint; he offered suggestions."
gee invited Alexander and his father in to present the ideas. Gee liked what he heard. He asked Alexander to make a presentation to Sheraton Park's managers.
"it was intimidating," Alexander said. "They were all wearing suits."
They liked what they heard, too.
"I did not realize how prevalent autism is, how it affects people in different ways, and never thought how it impacts their travel plans," Gee said. "The staff wholeheartedly embraced it."
So over the last six months, Gee and his staff worked with Alexander and his family to make changes. The hotel spent about $8,000.
A behavioral therapist was brought in to train the staff. The hotel's restaurant menu added gluten-and casein-free offerings and was stocked with special adaptive plates, utensils and sippy cups.
The front desk now offers, for free, iPads and tablets,a weighed vest and exercise balls. In the gift shop, adult diapers, swim diapers, floaties and other supplies are available for purchase.
Prior to checking in, the hotel surveys families with children with autism for their needs and room preference. Accommodations are made so they don't wait in long lines. The hotel also offers oversized stroller rentals and a sitting service that specializes in autism spectrum disorder care for parents who want a date night.
Drew A. Nguyen, CEO of Behavior Functions, a company specializing in behavioral therapy and training for autism and special needs, said he hasn't seen a program like this at a hotel before. Nguyen, who estimates nearly 3.5 million people in the country live with an autism spectrum disorder, was brought in to train the staff.
"These families face so many barriers, either staff not understanding autism or (viewing it as) a stigma. Some don't go out at all," Nguyen said of the families. "This is really a big project, and we ar ehoping this program can allw many of these families to go out into the community and be in a comfortable area and enjoy life and make memories."
Gee said if the pilot program is successful in Anaheim, Sheraton's parent company, Marriott, may implement it in more of its hotels.
"I did this for my brother," Alexander said.
The program is called Member of Autism Care Services. For short, the hotel employees call it the MAX program.
IN MY LIFE-SIXERS TICKETS
I called the Sixers today for info regarding handicapped accessible seating.
When I go to a Flyers game, they longer sell accessible seats directly to me. I don't know why, maybe because able-bodied fans were sneaking into the special section, for the last few years I've had to buy inaccessible seats- upper deck, whatever- then get to the Wells Fargo center as the doors open, and l;literally race to Customer Service and exchange the tix for accessible seats.
First come, first serve. If we are stuck in traffic or late, we don't get accessible seats ( I don't know what happens then).
Anyway, as crazy as it sounds, we haven't had problems with the Flyers, They have always been able to relocate us ( BTW, the Phillies and Eagles are excellent when it comes to accessible seating).
When I called the Sixers today, since I haven't been to a Sixer game in years (I wonder why), I just wanted to know if their policy is the same as the Flyers.
A young kid named Marshall answered. To make along article short, the kid couldn't tell me what their policy is regarding accessible seating, even after speaking to a supervisor.
He persistently tried to sell me season tickets, saying it was "the only way to assure my handicapped spot " "Since we don't own the building, there is nothing we can do."
I asked him if their policy was the same as the Flyers, and he didn't know. He said single game tickets go on sale "in a month", and tickets are sold thru StubHub, I again asked if I needed to buy tickets thru them, then go to Customer Service to relocate. Again, he didn't know.
Before I hung up, he asked for my name and email and said "they would be in touch during the season"(I'm sure I'll be getting a lot of emails). He also wanted to know how many games I intended to see this year, and "what do I usually pay for a game."
Again, I told him I hadn't been to a Sixer game in years, but for the Flyers, I get upper deck seats, then exchange them at Customer Service. For the Phillies, depending on the team, tix may run anywhere from $60-$80 a game. For the eagles, anywhere from $105-$125 per game.
He very quickly got rid of then, and I assumed Sixer tix were out of my price range.
One last try, he wanted to sell me season tickets again ( annoying). I finally said, thanks but no thanks, I can't afford them. I can't go to all of those games, plus I'm not interested in season tickets.
He did apologize for not being able to help me. "I wish I could help you, but we don't own the building" (whatever that means).
So, I guess I'll try Stubhub and do what we do for the Flyers, try to exchange them the day of the game. But I'm still not sure what to do.
It's all so confusing and it doesn't have to be. Once again, we disabled fans feel "different"and are on the outside looking in.
When I go to a Flyers game, they longer sell accessible seats directly to me. I don't know why, maybe because able-bodied fans were sneaking into the special section, for the last few years I've had to buy inaccessible seats- upper deck, whatever- then get to the Wells Fargo center as the doors open, and l;literally race to Customer Service and exchange the tix for accessible seats.
First come, first serve. If we are stuck in traffic or late, we don't get accessible seats ( I don't know what happens then).
Anyway, as crazy as it sounds, we haven't had problems with the Flyers, They have always been able to relocate us ( BTW, the Phillies and Eagles are excellent when it comes to accessible seating).
When I called the Sixers today, since I haven't been to a Sixer game in years (I wonder why), I just wanted to know if their policy is the same as the Flyers.
A young kid named Marshall answered. To make along article short, the kid couldn't tell me what their policy is regarding accessible seating, even after speaking to a supervisor.
He persistently tried to sell me season tickets, saying it was "the only way to assure my handicapped spot " "Since we don't own the building, there is nothing we can do."
I asked him if their policy was the same as the Flyers, and he didn't know. He said single game tickets go on sale "in a month", and tickets are sold thru StubHub, I again asked if I needed to buy tickets thru them, then go to Customer Service to relocate. Again, he didn't know.
Before I hung up, he asked for my name and email and said "they would be in touch during the season"(I'm sure I'll be getting a lot of emails). He also wanted to know how many games I intended to see this year, and "what do I usually pay for a game."
Again, I told him I hadn't been to a Sixer game in years, but for the Flyers, I get upper deck seats, then exchange them at Customer Service. For the Phillies, depending on the team, tix may run anywhere from $60-$80 a game. For the eagles, anywhere from $105-$125 per game.
He very quickly got rid of then, and I assumed Sixer tix were out of my price range.
One last try, he wanted to sell me season tickets again ( annoying). I finally said, thanks but no thanks, I can't afford them. I can't go to all of those games, plus I'm not interested in season tickets.
He did apologize for not being able to help me. "I wish I could help you, but we don't own the building" (whatever that means).
So, I guess I'll try Stubhub and do what we do for the Flyers, try to exchange them the day of the game. But I'm still not sure what to do.
It's all so confusing and it doesn't have to be. Once again, we disabled fans feel "different"and are on the outside looking in.
IN THE NEWS- DOWN SYNDROME DOCUMENTARY COMING TO PBS
From the website Disability Scoop..
Deep questions about independence- or lack thereof- for adults with Down syndrome are at the center of a new film that's set to make its television debut.
"The Grown-Ups" will air next month as part of PBS's POV series.
The documentary focuses on the experiences of a group of middle-aged adults with Down syndrome in Chile who attend a center where they go to school, participate in regular therapy sessions and staff a catering business.
the film finds its subjects with a variety of outside limitations.
One couple wishes to get married, but learns that a union between two people with Down syndrome would not be legally recognized in their country. They also must deal with the reality of menopause curbing their ability to have a child since adoption would be restricted or prohibited as well.
Meanwhile, another man struggles with the fact that he works two jobs, but still earns far too little to be able to live independently.
'The unforgettable characters at the center of this film highlight important questions about the constraints placed on those deemed 'less than' by various societal institutions," said Chris White, executive producer of POV. "A remarkable and impassioned work, it forces us to consider the pain that can be imposed by varying notions of how much freedom is appropriate for those living with developmental disabilities."
"The Grown-Ups" ill appear Sept. 4 at 10 p.m. ET.
Deep questions about independence- or lack thereof- for adults with Down syndrome are at the center of a new film that's set to make its television debut.
"The Grown-Ups" will air next month as part of PBS's POV series.
The documentary focuses on the experiences of a group of middle-aged adults with Down syndrome in Chile who attend a center where they go to school, participate in regular therapy sessions and staff a catering business.
the film finds its subjects with a variety of outside limitations.
One couple wishes to get married, but learns that a union between two people with Down syndrome would not be legally recognized in their country. They also must deal with the reality of menopause curbing their ability to have a child since adoption would be restricted or prohibited as well.
Meanwhile, another man struggles with the fact that he works two jobs, but still earns far too little to be able to live independently.
'The unforgettable characters at the center of this film highlight important questions about the constraints placed on those deemed 'less than' by various societal institutions," said Chris White, executive producer of POV. "A remarkable and impassioned work, it forces us to consider the pain that can be imposed by varying notions of how much freedom is appropriate for those living with developmental disabilities."
"The Grown-Ups" ill appear Sept. 4 at 10 p.m. ET.
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