Wednesday, July 29, 2009
New York State Access Pass
An Access Pass permits a resident of New York State with a permanentdisability (partially defined below) free use of parks, historic sites andrecreational facilities operated by the New York State Office of Parks,Recreation and Historic Preservation and the NYS Department of EnvironmentalConservation. The pass holder may have free use of facilities operated bythese offices, for which there is normally a charge for example, parking,camping, greens fees, swimming. The Pass, however, is not valid at anyfacility within a park operated by a private concern under contract to theState, or for a waiver of fees such as those for seasonal marina dockage,for a group camp, for reservation of a picnic shelter, for performing artsprograms, for consumables (i.e. firewood, electric, or gas) forcampsite/cabin amenities, or for fees related to campsite/cabin reservationsand registrations.To qualify for an Access Pass, an applicant must be a resident ofNew York State and must provide proof of disability, in the form ofcertification for an appropriate agency (defined in the application) or by aphysician. A disability includes: Blindness, Developmental Disability,Physical Disability requiring physical assistance, wheelchair confinement,prosthetic devices. Refer to the Access Pass application for more completeinformation.To request an application, contact NYS Office of Parks andRecreation and Historic Preservation, Access Pass, Albany, NY 12238 or call518-474-2324.
Tuesday, July 28, 2009
Restrictive Diets May Not Be Appropriate for Children With Autism
July 28, 2009
Restrictive Diets May Not Be Appropriate for Children With Autism
By RONI CARYN RABIN
Many parents of autistic children have put their children on strict gluten-free or dairy-free diets, convinced that gastrointestinal problems are an underlying cause of the disorder. But a new study suggests the complicated food regimens may not be warranted.
Researchers at the Mayo Clinic reviewed the medical records of over 100 autistic children over an 18-year period and compared them to more than 200 children without the disorder. The scientists found no differences in the overall frequency of gastrointestinal problems reported by the two groups, though the autistic children suffered more frequently from bouts of constipation and were more likely to be picky eaters who had difficulty gaining weight.
The study, published on Monday in the journal Pediatrics, is the first to look at the incidence of gastrointestinal problems in an autistic population, according to the paper’s first author, Dr. Samar H. Ibrahim, a pediatric gastroenterologist at the Mayo Clinic. She suggested that autistic children should only be put on restrictive wheat-free or dairy-free diets after having appropriate diagnostic tests done.
“There is actually no trial that has proven so far that a gluten-free and casein-free diet improves autism,” she said. “The diets are not easy to follow and can sometimes cause nutritional deficiencies.”
The study found that the vast majority of both autistic and non-autistic children suffered from bouts of common gastrointestinal problems like constipation, diarrhea, abdominal bloating, reflux or vomitin.g Feeding issues and picky eating were also common. Some 77 percent of autistic children and 72 percent of non-autistic children were affected by one or more of these complaints over the 18-year period.
About 34 percent of the autistic children were affected by constipation, compared to 17.6 percent of the comparison group, while 24.5 percent of the autistic children had feeding issues and were selective in their eating, compared with only 16 percent of the non-autistic group.
But very few of the autistic children had a specific diagnosis of a gastrointestinal disease. Only one autistic child had Crohn’s disease, and one had intestinal disaccharidase deficiency and lacked enzymes necessary to digest certain carbohydrates. None suffered from celiac disease, which some reports have linked to autism.
Two of the non-autistic children in the comparison group suffered from lactose intolerance, and one had a milk allergy.
Dr. Ibrahim suggested that the loss of appetite and difficulty gaining weight in autistic children may be related to the use of stimulant medications, which are often prescribed for the condition, and that the constipation may be due to children not consuming enough fiber or drinking enough water.
Restrictive Diets May Not Be Appropriate for Children With Autism
By RONI CARYN RABIN
Many parents of autistic children have put their children on strict gluten-free or dairy-free diets, convinced that gastrointestinal problems are an underlying cause of the disorder. But a new study suggests the complicated food regimens may not be warranted.
Researchers at the Mayo Clinic reviewed the medical records of over 100 autistic children over an 18-year period and compared them to more than 200 children without the disorder. The scientists found no differences in the overall frequency of gastrointestinal problems reported by the two groups, though the autistic children suffered more frequently from bouts of constipation and were more likely to be picky eaters who had difficulty gaining weight.
The study, published on Monday in the journal Pediatrics, is the first to look at the incidence of gastrointestinal problems in an autistic population, according to the paper’s first author, Dr. Samar H. Ibrahim, a pediatric gastroenterologist at the Mayo Clinic. She suggested that autistic children should only be put on restrictive wheat-free or dairy-free diets after having appropriate diagnostic tests done.
“There is actually no trial that has proven so far that a gluten-free and casein-free diet improves autism,” she said. “The diets are not easy to follow and can sometimes cause nutritional deficiencies.”
The study found that the vast majority of both autistic and non-autistic children suffered from bouts of common gastrointestinal problems like constipation, diarrhea, abdominal bloating, reflux or vomitin.g Feeding issues and picky eating were also common. Some 77 percent of autistic children and 72 percent of non-autistic children were affected by one or more of these complaints over the 18-year period.
About 34 percent of the autistic children were affected by constipation, compared to 17.6 percent of the comparison group, while 24.5 percent of the autistic children had feeding issues and were selective in their eating, compared with only 16 percent of the non-autistic group.
But very few of the autistic children had a specific diagnosis of a gastrointestinal disease. Only one autistic child had Crohn’s disease, and one had intestinal disaccharidase deficiency and lacked enzymes necessary to digest certain carbohydrates. None suffered from celiac disease, which some reports have linked to autism.
Two of the non-autistic children in the comparison group suffered from lactose intolerance, and one had a milk allergy.
Dr. Ibrahim suggested that the loss of appetite and difficulty gaining weight in autistic children may be related to the use of stimulant medications, which are often prescribed for the condition, and that the constipation may be due to children not consuming enough fiber or drinking enough water.
Monday, July 20, 2009
Celexa May Not Help Kids With Autism
Celexa May Not Help Kids With Autism
06.01.09, 04:00 PM EDT
Study finds no benefit, and more side effects, but not all agree
MONDAY, June 1 (HealthDay News) -- In contrast to the assumptions of some doctors, new research suggests that the antidepressant Celexa does not help relieve repetitive behaviors often seen in children and teens with autism.
But the findings still need to be confirmed by other studies, and at least one autism specialist said the drug has worked well in his patients of preschool age, who are younger than those in the study.
"The jury is still out on how autism should be treated," said the specialist, Dr. Andrew Zimmerman, a pediatric neurologist and director of medical autism research at the Kennedy Krieger Institute in Baltimore.
Antidepressants known as selective serotonin reuptake inhibitors, or SSRIs, are a common treatment for autism and given to perhaps 30 percent of children with the condition, said Dr. Bryan King, lead author of the study. Other common treatments, he said, include antipsychotic drugs, which calm people who use them, and stimulants such as Ritalin, which reduce hyperactivity and impulsive behaviors.
Celexa, also known by the generic name citalopram, is lesser known than similar antidepressants such as Prozac and Paxil. But it's easier to prescribe to autistic children because it comes in a liquid form, meaning that parents don't have to force their children to take pills, said King, a researcher and director of psychiatry and behavioral medicine at Seattle Children's Hospital and the University of Washington.
Also, the drug spends less time in the body before being flushed out, making it easier for doctors to quickly adjust the dosage, he said.
King's research team assumed that Celexa reduces symptoms of autism in children, such as repetitive motions, but they wanted to understand more about its powers.
"We didn't expect it to work for everyone, but we were hoping that we'd be able to drill down into the population for whom it was very helpful and begin to identify the predictor of what a positive response would be," he said.
They randomly gave either 16.5 milligrams, on average, of Celexa or a placebo to 149 children with autism who were 5 to 17 years old. The children took the drug or fake drug for three months, and 123 of them finished the study.
The number of children who improved -- defined as not engaging in as many repetitive behaviors -- was about a third in both groups.
In other words, Celexa appeared to make no difference compared with a placebo. And children on Celexa were more likely to suffer from apparent side effects such as diarrhea, insomnia, hyperactivity and repetition of movements, the study found.
In a statement, Forest Laboratories, the maker of Celexa, said that it "was not involved in this study and therefore cannot provide comment."
The results are in the June issue of Archives of General Psychiatry.
The finding raises questions about whether similar antidepressants are also not providing benefit, or as much benefit as doctors had assumed, King said.
Zimmerman, the Baltimore autism specialist, said he's successfully treated younger autistic children, ages 3 to 5, with the drug. He added that he uses smaller doses, which appear to not create as many side effects.
"If you start at a very low dose and build it up slowly, you see improvements in mood and decreases in repetitive behaviors," he said. "The kids are more attentive."
More information
The U.S. National Institute of Neurological Disorders and Stroke has more on autism.
06.01.09, 04:00 PM EDT
Study finds no benefit, and more side effects, but not all agree
MONDAY, June 1 (HealthDay News) -- In contrast to the assumptions of some doctors, new research suggests that the antidepressant Celexa does not help relieve repetitive behaviors often seen in children and teens with autism.
But the findings still need to be confirmed by other studies, and at least one autism specialist said the drug has worked well in his patients of preschool age, who are younger than those in the study.
"The jury is still out on how autism should be treated," said the specialist, Dr. Andrew Zimmerman, a pediatric neurologist and director of medical autism research at the Kennedy Krieger Institute in Baltimore.
Antidepressants known as selective serotonin reuptake inhibitors, or SSRIs, are a common treatment for autism and given to perhaps 30 percent of children with the condition, said Dr. Bryan King, lead author of the study. Other common treatments, he said, include antipsychotic drugs, which calm people who use them, and stimulants such as Ritalin, which reduce hyperactivity and impulsive behaviors.
Celexa, also known by the generic name citalopram, is lesser known than similar antidepressants such as Prozac and Paxil. But it's easier to prescribe to autistic children because it comes in a liquid form, meaning that parents don't have to force their children to take pills, said King, a researcher and director of psychiatry and behavioral medicine at Seattle Children's Hospital and the University of Washington.
Also, the drug spends less time in the body before being flushed out, making it easier for doctors to quickly adjust the dosage, he said.
King's research team assumed that Celexa reduces symptoms of autism in children, such as repetitive motions, but they wanted to understand more about its powers.
"We didn't expect it to work for everyone, but we were hoping that we'd be able to drill down into the population for whom it was very helpful and begin to identify the predictor of what a positive response would be," he said.
They randomly gave either 16.5 milligrams, on average, of Celexa or a placebo to 149 children with autism who were 5 to 17 years old. The children took the drug or fake drug for three months, and 123 of them finished the study.
The number of children who improved -- defined as not engaging in as many repetitive behaviors -- was about a third in both groups.
In other words, Celexa appeared to make no difference compared with a placebo. And children on Celexa were more likely to suffer from apparent side effects such as diarrhea, insomnia, hyperactivity and repetition of movements, the study found.
In a statement, Forest Laboratories, the maker of Celexa, said that it "was not involved in this study and therefore cannot provide comment."
The results are in the June issue of Archives of General Psychiatry.
The finding raises questions about whether similar antidepressants are also not providing benefit, or as much benefit as doctors had assumed, King said.
Zimmerman, the Baltimore autism specialist, said he's successfully treated younger autistic children, ages 3 to 5, with the drug. He added that he uses smaller doses, which appear to not create as many side effects.
"If you start at a very low dose and build it up slowly, you see improvements in mood and decreases in repetitive behaviors," he said. "The kids are more attentive."
More information
The U.S. National Institute of Neurological Disorders and Stroke has more on autism.
Monday, July 13, 2009
News from Disability Scoop
Disability Scoop Email News: Friday, July 10 , 2009
To check out these headlines and more, visit DisabilityScoop.com everyday for the latest in developmental disability news. Like what you see here? Feel free to forward this email to your friends and colleagues. And, if you haven't already, click here to register with Disability Scoop, it's free!
Latest Headlines:
Long-Term Care Enters Health Reform DebateJuly 10, 2009White House officials tell Disability Scoop the president supports the Community Choice Act, but are mum on including it in health care reform.
Children Often Age 3 Or More Before Fragile X ConfirmedJuly 9, 2009Despite increased awareness, there’s been practically no change in the age of diagnosis over the last seven years, a study finds.
Beware Of Free Drug Samples, Consumer Group SaysJuly 9, 2009Think twice before accepting free samples of drugs like Adderall XR, Concerta and Strattera, Consumer Reports is warning.
Push For Autism Insurance Mandate Shifts Into High GearJuly 8, 2009An ad campaign launched Wednesday by Autism Speaks urges Congress to include autism insurance coverage in its health care reform efforts.
Autism Brings Moms A Whole New Level Of Stress, Study SaysJuly 8, 2009Mothers of children with autism experience more stress than mothers of kids with other types of developmental delay.
Man With Down Syndrome To Be Honored At All-Star GameJuly 8, 2009A man with Down syndrome will be one of 30 heroes honored by People Magazine and Major League Baseball at the league’s All-Star Game.
Disability Groups Unite Behind Sotomayor ConfirmationJuly 8, 2009More than two dozen national disability organizations are asking the Senate to confirm Sonia Sotomayor’s nomination to the Supreme Court.
The Scoop:
Scoop Essentials: Preventing Violence, Abuse And NeglectJuly 7, 2009People with developmental disabilities can be seen as easy prey. Learn how to avoid being victimized from Nancy Fitzsimons, an associate professor of social work at Minnesota State University, Mankato who specializes in abuse prevention for people with disabilities. Check out what Fitzsimons has to say and then click here to submit your own questions to her.
Advertise With Disability ScoopLooking to get noticed ? Our new advertising program for companies, organizations and professionals offers targeted solutions for any budget. To learn more click here.
Announcements & Reminders...
Announcing Scoop Group, The Disability Scoop Discussion ForumBe among the first to post on Disability Scoop's discussion forum. Ask for advice, advocate for your cause, share ideas. It's up to you. You came for the news. Now, stay for the community on Scoop Group, your new way to connect to the developmental disability community.
Also, Now Available: Video "The IEP And You" (View In English Or Spanish)Accepting Questions About IEPsRecently we brought you Sc oop Essentials: IEPs Inside Out, a frank discussion of IEPs with the head of one of the nation's largest special education programs, Donnalyn Jaque-Antón. She is responding to reader questions. Click here to submit your own questions and check back soon to read her responses.Accepting Questions About Disclosing A DisabilityRecently we published Scoop Essentials: Disclosing Disability, Tackling A Dicey Proposition, a conversation about talking about disability with therapist Diane Smith. She is responding to reader questions. Click here to submit your own questions and check back soon to read her responses.
Disability Scoop Is On Twitter!Follow Disability Scoop on Twitter where you can sign up to receive news alerts on your mobile phone as text messages. Click here to check it out and don't forget to become a follower.
Become A Fan On FacebookClick here to check out the Disability Scoop page on Facebook and be sure to become a fan.
About Disability ScoopDisability Scoop is the first and only nationally focused online news organization serving the developmental disability community including autism, cerebral palsy, Down syndrome, fragile X and intellectual disability, among others. Launched in 2008, Disability Scoop is the premier source for developmental disability news. Learn more at http://www.disabilityscoop.com.
To check out these headlines and more, visit DisabilityScoop.com everyday for the latest in developmental disability news. Like what you see here? Feel free to forward this email to your friends and colleagues. And, if you haven't already, click here to register with Disability Scoop, it's free!
Latest Headlines:
Long-Term Care Enters Health Reform DebateJuly 10, 2009White House officials tell Disability Scoop the president supports the Community Choice Act, but are mum on including it in health care reform.
Children Often Age 3 Or More Before Fragile X ConfirmedJuly 9, 2009Despite increased awareness, there’s been practically no change in the age of diagnosis over the last seven years, a study finds.
Beware Of Free Drug Samples, Consumer Group SaysJuly 9, 2009Think twice before accepting free samples of drugs like Adderall XR, Concerta and Strattera, Consumer Reports is warning.
Push For Autism Insurance Mandate Shifts Into High GearJuly 8, 2009An ad campaign launched Wednesday by Autism Speaks urges Congress to include autism insurance coverage in its health care reform efforts.
Autism Brings Moms A Whole New Level Of Stress, Study SaysJuly 8, 2009Mothers of children with autism experience more stress than mothers of kids with other types of developmental delay.
Man With Down Syndrome To Be Honored At All-Star GameJuly 8, 2009A man with Down syndrome will be one of 30 heroes honored by People Magazine and Major League Baseball at the league’s All-Star Game.
Disability Groups Unite Behind Sotomayor ConfirmationJuly 8, 2009More than two dozen national disability organizations are asking the Senate to confirm Sonia Sotomayor’s nomination to the Supreme Court.
The Scoop:
Scoop Essentials: Preventing Violence, Abuse And NeglectJuly 7, 2009People with developmental disabilities can be seen as easy prey. Learn how to avoid being victimized from Nancy Fitzsimons, an associate professor of social work at Minnesota State University, Mankato who specializes in abuse prevention for people with disabilities. Check out what Fitzsimons has to say and then click here to submit your own questions to her.
Advertise With Disability ScoopLooking to get noticed ? Our new advertising program for companies, organizations and professionals offers targeted solutions for any budget. To learn more click here.
Announcements & Reminders...
Announcing Scoop Group, The Disability Scoop Discussion ForumBe among the first to post on Disability Scoop's discussion forum. Ask for advice, advocate for your cause, share ideas. It's up to you. You came for the news. Now, stay for the community on Scoop Group, your new way to connect to the developmental disability community.
Also, Now Available: Video "The IEP And You" (View In English Or Spanish)Accepting Questions About IEPsRecently we brought you Sc oop Essentials: IEPs Inside Out, a frank discussion of IEPs with the head of one of the nation's largest special education programs, Donnalyn Jaque-Antón. She is responding to reader questions. Click here to submit your own questions and check back soon to read her responses.Accepting Questions About Disclosing A DisabilityRecently we published Scoop Essentials: Disclosing Disability, Tackling A Dicey Proposition, a conversation about talking about disability with therapist Diane Smith. She is responding to reader questions. Click here to submit your own questions and check back soon to read her responses.
Disability Scoop Is On Twitter!Follow Disability Scoop on Twitter where you can sign up to receive news alerts on your mobile phone as text messages. Click here to check it out and don't forget to become a follower.
Become A Fan On FacebookClick here to check out the Disability Scoop page on Facebook and be sure to become a fan.
About Disability ScoopDisability Scoop is the first and only nationally focused online news organization serving the developmental disability community including autism, cerebral palsy, Down syndrome, fragile X and intellectual disability, among others. Launched in 2008, Disability Scoop is the premier source for developmental disability news. Learn more at http://www.disabilityscoop.com.
Monday, June 29, 2009
They Taught Him to Fish, Then Let Go
By PETER APPLEBOME
FREEPORT, N.Y.
The invitation for Dan Mulvaney’s graduation Sunday showed a burly young man with a hipster’s goatee wearing a graduation cap (courtesy of Photoshop) and holding a real striped bass he caught in the bay behind Long Beach High School.
It read: “ ’Twas said that by teaching a man to fish you feed him for a lifetime.
“Dan Mulvaney has learned to fish, learned to cook and accomplished many things. Dan is ready to take on the world. Join us in celebration of his graduation, with honor, from Long Beach High School.”
It concluded: “Casual cuisine, beach-friendly dress code, indescribable pride.”
You could sense that indescribable pride Friday as his father, Jim Mulvaney, watched his son at work at the recreation center in this Long Island suburb just across the bay from their home.
After all, Dan holds down two jobs, at the recreation center here and the Lakewood Stables in West Hempstead. He’s getting ready to move into a house with three friends. He cooks — mostly pasta — and picks up after himself and does his chores at home better than most of his peers. His mother, Barbara Fischkin, says when they walk on the boardwalk in this unpretentious seaside town, more people greet him than her. Dan often accompanies his father to a local bar like Geri’s or John Henry’s, nursing a Sprite and picking the olive out of his father’s martini.
At 21, he has even managed to learn to say a few words — hi, mom, dad, more, food, bathroom and a few others. He may indeed be ready to take on the world, but at the very low end of the autism developmental scale, he’ll take it on with very limited tools. He’ll almost certainly need a full-time caregiver for the rest of his life.
Every graduation has its own history and conflicting story lines — pride, nostalgia, joy, achievement, regret, separation. It’s hard to know who’s in for more change and who’s better prepared for it, the graduate or the parents.
But this is a graduation that seemed unlikely to happen, so you can multiply all the emotions by 2, 3 or 10. Dan seemed on a normal developmental track for his first three and a half years until things went haywire. His speech suddenly stopped. He sat in a corner gnawing on his shirt. His parents first thought it would pass, then that it was a hearing issue, and finall y the cold, terrifying diagnosis came.
In the early years, the school district had no idea what to do with him and said he was better off at home or a “special school.”
As a middle school student he was isolated from other children and placed in the corner of a foyer where the solution was to let him bounce on a trampoline, ride an exercise bike and nap as frequently as possible. His parents were told that at least one teacher referred to him as “an animal” from whom other students needed protection.
The school district insisted that Dan be sent to an institutional setting, an idea his parents balked at even before a state official had warned them that a school recommended by the district had problems with pedophilia.
And for all the expense and havoc, the $50,000 yearly baby-sitting bills, the disruption he created to careers and relationships, they didn’t want their son in an institution. They wanted him in a local school and in his own house.
“Parenthood is not something you can abdicate,” Mr. Mulvaney said. “No one is going to look after your child better than you, especially a hard child.”
SO instead, with the assistance of the district’s head of special education, Mary Tatem, they pushed and prodded, became total pests, made themselves and the district crazy but ended up with the best education Dan could hope for, one where he ate with other kids and became part of their world — good for him, good for them. And along the way Long Beach transformed itself from a district that barely knew how to deal with special-needs kids into one of the best in the region.
None of it is perfect. How could it be? But Sunday, Dan was coaxed into putting on his graduation gown and, after halting for a moment as if pleased and surprised by the enormous burst of applause, received his diploma. About 60 people came to his house to celebrate — parents, teachers, advocates for the autistic, his pediatrician, the friends who greet him on the boardwalk.
On Monday, he goes off to a summer camp, and then he’ll begin his new life at a group home. And he and his parents, like so many this time of year, will start anew with both a new set of possibilities and unalterable ties to the life they’ve somehow suddenly, miraculously outgrown.
E-mail: peappl@nytimes.com
FREEPORT, N.Y.
The invitation for Dan Mulvaney’s graduation Sunday showed a burly young man with a hipster’s goatee wearing a graduation cap (courtesy of Photoshop) and holding a real striped bass he caught in the bay behind Long Beach High School.
It read: “ ’Twas said that by teaching a man to fish you feed him for a lifetime.
“Dan Mulvaney has learned to fish, learned to cook and accomplished many things. Dan is ready to take on the world. Join us in celebration of his graduation, with honor, from Long Beach High School.”
It concluded: “Casual cuisine, beach-friendly dress code, indescribable pride.”
You could sense that indescribable pride Friday as his father, Jim Mulvaney, watched his son at work at the recreation center in this Long Island suburb just across the bay from their home.
After all, Dan holds down two jobs, at the recreation center here and the Lakewood Stables in West Hempstead. He’s getting ready to move into a house with three friends. He cooks — mostly pasta — and picks up after himself and does his chores at home better than most of his peers. His mother, Barbara Fischkin, says when they walk on the boardwalk in this unpretentious seaside town, more people greet him than her. Dan often accompanies his father to a local bar like Geri’s or John Henry’s, nursing a Sprite and picking the olive out of his father’s martini.
At 21, he has even managed to learn to say a few words — hi, mom, dad, more, food, bathroom and a few others. He may indeed be ready to take on the world, but at the very low end of the autism developmental scale, he’ll take it on with very limited tools. He’ll almost certainly need a full-time caregiver for the rest of his life.
Every graduation has its own history and conflicting story lines — pride, nostalgia, joy, achievement, regret, separation. It’s hard to know who’s in for more change and who’s better prepared for it, the graduate or the parents.
But this is a graduation that seemed unlikely to happen, so you can multiply all the emotions by 2, 3 or 10. Dan seemed on a normal developmental track for his first three and a half years until things went haywire. His speech suddenly stopped. He sat in a corner gnawing on his shirt. His parents first thought it would pass, then that it was a hearing issue, and finall y the cold, terrifying diagnosis came.
In the early years, the school district had no idea what to do with him and said he was better off at home or a “special school.”
As a middle school student he was isolated from other children and placed in the corner of a foyer where the solution was to let him bounce on a trampoline, ride an exercise bike and nap as frequently as possible. His parents were told that at least one teacher referred to him as “an animal” from whom other students needed protection.
The school district insisted that Dan be sent to an institutional setting, an idea his parents balked at even before a state official had warned them that a school recommended by the district had problems with pedophilia.
And for all the expense and havoc, the $50,000 yearly baby-sitting bills, the disruption he created to careers and relationships, they didn’t want their son in an institution. They wanted him in a local school and in his own house.
“Parenthood is not something you can abdicate,” Mr. Mulvaney said. “No one is going to look after your child better than you, especially a hard child.”
SO instead, with the assistance of the district’s head of special education, Mary Tatem, they pushed and prodded, became total pests, made themselves and the district crazy but ended up with the best education Dan could hope for, one where he ate with other kids and became part of their world — good for him, good for them. And along the way Long Beach transformed itself from a district that barely knew how to deal with special-needs kids into one of the best in the region.
None of it is perfect. How could it be? But Sunday, Dan was coaxed into putting on his graduation gown and, after halting for a moment as if pleased and surprised by the enormous burst of applause, received his diploma. About 60 people came to his house to celebrate — parents, teachers, advocates for the autistic, his pediatrician, the friends who greet him on the boardwalk.
On Monday, he goes off to a summer camp, and then he’ll begin his new life at a group home. And he and his parents, like so many this time of year, will start anew with both a new set of possibilities and unalterable ties to the life they’ve somehow suddenly, miraculously outgrown.
E-mail: peappl@nytimes.com
Wide World of Adaptive Sports
On Sunday June 14th, 2009 Kulanu, together with the Five Towns JCC, CAHAL, and TOVA, held its first Wide World of Adaptive Sports symposium for parents and their children with special needs at HAFTR Elementary school. Coaching parents in the techniques of breaking down sports to adaptive skills for their children, parents and children spent the morning at karate, yoga, basketball, soccer and aerobics workshops run by Kulanu specialists and visiting professionals. Information tables for other adaptive sporting events such as golf, baseball, horseback riding, Special Olympics, and track and field events were on hand. As an added perk, the first fifty participants were given free bike helmets.
The highlight of the day featured an inclusion baseball game played by Kulanu members and special guests from the Young Israel of Woodmere’s little league team. Parents burst with pride as their children hit, ran and fielded during the game. One parent commented that she’d like to someday see “kids with special needs integrated into community little league teams.”
Steven Cuomo, founder of Rolling Thunder, a Track and Field team that includes individuals with disabilities running side-by-side with “typical” runners, enthused about the importance of getting all kids involved in sports.
“In the classroom you can tell the difference between a child with autism and the others. Put the same group of teens on a track field and they all are same. It’s time we stated focusing on peoples abilities and help them build on their strengths instead of looking at what they can’t do.”
All participants were given a take-home guide to special needs sports that Kulanu compiled. If you would like a copy of the guide and further information about the many programs available to families with children with disabilities, please contact Leiby Brill at 516-569-6664 or e-mail to leiby@kulanukids.org.
SUMMER 2009 programs and camps for Special Needs families
Here's a quick outline of all the summer programs and special needs camps for SUMMER 2009! Attachments and listing will also be posted on our website, www.ManhassetSEPTA.org throughout the summer for your convenience-hope you find them helpful and wishes for a fun, healthy summer for all!
Events:
Special Day for Special Kids Event-Sat July 25 and Sun July 26, 11am-4pm. Summer Festival for children with developmental disabilities (including Autism Spectrum, ADHD, OCD, Tourette's, and related neurobiological disorders) and their families! Wall climbing, EuroBungee, mini golf, bouncy castle, giant slide, swimming pool and water slide, baseball, basketball, toddler and big kid playgrounds, paddle boat and MORE! West Hills Day Camp in Huntington $12/adult-$6 for kids 12-3y/o (free for 3y/o and under) Bring lunch-or buy it there. www.specialdayforspecilakids.com (See attached flyer.)
Learn to ride a two-wheel bike-ALL kids welcomed! Log on to www.bikeny.org and sign up for the free class. This group also helps fits helmets (can provide one also!) and size handlebars and seats to child's body and more! It's a 2 hrs workshop FREE--typical and special needs kids.
Free Summer Family Film Festival-Westbury Stadium 12 theaters at Brush Hollow Road is hosting free family movies every Tues and Weds at 10am all summer long! Space Chimps, Kung Fu Panda, Curious George, Barnyard and lots of family films your kids might have missed in the past years-or would love to see on the big screen again. Visit the Regal movies website for the complete listing (festival is nationwide!) http://www.regmovies.com/nowshowing/familyfilmfestivalschedule.aspx?state=NY
Surfer's Way will be having three special needs tandem surfing experiences this summer at Long Beach, NY. Everything is supplied and free including individual tandem surfing instructor, wetsuit, life vests and boards-just bring a towel and sunscreen! Check out their site for details and dates http://surfersway.org
Hooves for Hope at the Sand's Point Preserve is now accepting enrollment for their Equine assisted program for special needs children and their families. Check out their website for more information and an application http://www.hoovesforhope.org/ .
Programs:
The Mosaic School Summer Program for children 7-16 y/o with Autism offers a behavioral school program in Wantagh with 6 or 8 week program that includes recreational activities that support social skills, behavior management, and academics over the summer. Call 516-765-3696 for more details.
St. Mary's Kids at Roslyn now offers programs for k-3 and 4-8 grades including therapeutic listening, Wii exercise program, handwriting without tears, and more programs this summer. Call 516-621-2681 or email Sharon Pardo at spardo@stmaryskids.org for information on programs.
Power Pals' Afternoon Recreation Program-This program in Glen Cove is open to special needs and typically developing children ages 6-10 y/o from 1pm-4pm from June 29th to Aug 14th. Daily program includes bike riding lessons, sports snack and water play headed by "Skills-n-Drill Bootcamp's" own Coach Chris Speziali! Call 516-359-7734 or register online at www.power-pals.com. (See attached file)
For Teens and College Students with ASDs: Summer Organization and Academics Readiness at the Fay J. Lindner Center for Autism and Developmental Disabilities' Advantage Care Diagnostic and Treatment Center. This short term "coaching" therapy program focuses on self-awareness, organizational skills and executive functioning over 8weeks with a 1:1 skill building program (45 minutes per session). Bring a blank planner and get ready to get organized! If you are interested, please contact Laurie Perlis, Psy.D., program coordinator for more information at 516-686-4440.
Kehilla Vocation Experience at Sid Jacobson JCC is a 6 week summer vacation and work experience rolled into one for 16-21 y/o special needs young adults. Program includes two vocational sites throughout the summer and one day a week for fun-filled day trips, with fitness, art therapy and drama included as daily activities. (See attached flyer.) Contact Lisa Warren at lwarren@sjjcc.org or call 516-484-1545 ext 786.
Camps:
Ramapo Camp:
Footholds for the Future, a prep program for young adults with special needs who require supportive services on the road to independence. This program is designed to provide an inclusive group living experience focused on building healthy relationships, learning essential life skills, and practicing job-related competencies. Ramapo will operate two 12-week sessions in 2009 and three 12-week sessions in 2010 at Ramapo's Rhinebeck, NY campus. Participants may enroll in multiple sessions. 2009 Program Dates for summer; June-September 2009 (start and end dates are flexible) and fall; September 2-November 24, 2009 For more information and to apply, contact Mike Fleet at footholds@ramapoforchildren.org
Get Your Feet Wet for children is a new one-week camp program now available in August for first timers to sleep-away camp. Swimming, crafts, hikes, cookouts, and sing-alongs--all the best activities of the summer along with a wide range of special events will be offered during Ramapo's inaugural "Get Your Feet Wet" program, set for Saturday, August 22 through Saturday, August 29, 2009. For more information, please call us at (845) 876-8423 or e-mail mkunin@ramapoforchildren.org .
Camp Ramapo for 5-10y/o for one to six week programs. See attached flyer for details.
Mid Island Y JCC Afternoon Day Camp for Special Needs Children 3-10 y/o-The perfect compliment to CPSE or CSE morning programs, with a 2-to-1 child/counselor ratio to enjoy the summer camp experience. Program runs from June 30th to Aug 19th and includes swimming in their Olympic sized pool, sports, outside playground, music, snack and more. Contact Doreen McIlwaine at 516-822-3535 or via email at dmcilwaine@miyjcc.org for more info and prices.
Great website to help your summer routine and travel:
An online resource that helps walk parents through outlining and creating an ABA program to use at home, camp, and during summer happenings. www.rethinkautism.com
An online guide of gluten free eating for all of Long Island--www.GlutenfreeLI.com
And last..
NYS PTA's June Advocacy Newsletter and Legislative Briefs
Available on the website, www.nyspta.org, The Advocacy Newsletter reports information on education; environment; special education; health and wellness; parenting and family life; family, school and community engagement; and cyber/media safety. The Legislative Briefs... reports the latest information on both State and Federal legislative activity from the Legislation chairman.
Membership Connections
To help network and share information, SEPTA offers personal recommendations to explore and judge for yourself. Please email us with any recommendations or networking requests you may have!
Remember, KNOWLEDGE IS POWER-Please forward this on, and send us info to share! It is Manhasset SEPTA's mission to empower with knowledge, supporting parents and staff to give every child excellence in education and quality of life.
Many thanks, Manhasset SEPTA
Events:
Special Day for Special Kids Event-Sat July 25 and Sun July 26, 11am-4pm. Summer Festival for children with developmental disabilities (including Autism Spectrum, ADHD, OCD, Tourette's, and related neurobiological disorders) and their families! Wall climbing, EuroBungee, mini golf, bouncy castle, giant slide, swimming pool and water slide, baseball, basketball, toddler and big kid playgrounds, paddle boat and MORE! West Hills Day Camp in Huntington $12/adult-$6 for kids 12-3y/o (free for 3y/o and under) Bring lunch-or buy it there. www.specialdayforspecilakids.com (See attached flyer.)
Learn to ride a two-wheel bike-ALL kids welcomed! Log on to www.bikeny.org and sign up for the free class. This group also helps fits helmets (can provide one also!) and size handlebars and seats to child's body and more! It's a 2 hrs workshop FREE--typical and special needs kids.
Free Summer Family Film Festival-Westbury Stadium 12 theaters at Brush Hollow Road is hosting free family movies every Tues and Weds at 10am all summer long! Space Chimps, Kung Fu Panda, Curious George, Barnyard and lots of family films your kids might have missed in the past years-or would love to see on the big screen again. Visit the Regal movies website for the complete listing (festival is nationwide!) http://www.regmovies.com/nowshowing/familyfilmfestivalschedule.aspx?state=NY
Surfer's Way will be having three special needs tandem surfing experiences this summer at Long Beach, NY. Everything is supplied and free including individual tandem surfing instructor, wetsuit, life vests and boards-just bring a towel and sunscreen! Check out their site for details and dates http://surfersway.org
Hooves for Hope at the Sand's Point Preserve is now accepting enrollment for their Equine assisted program for special needs children and their families. Check out their website for more information and an application http://www.hoovesforhope.org/ .
Programs:
The Mosaic School Summer Program for children 7-16 y/o with Autism offers a behavioral school program in Wantagh with 6 or 8 week program that includes recreational activities that support social skills, behavior management, and academics over the summer. Call 516-765-3696 for more details.
St. Mary's Kids at Roslyn now offers programs for k-3 and 4-8 grades including therapeutic listening, Wii exercise program, handwriting without tears, and more programs this summer. Call 516-621-2681 or email Sharon Pardo at spardo@stmaryskids.org for information on programs.
Power Pals' Afternoon Recreation Program-This program in Glen Cove is open to special needs and typically developing children ages 6-10 y/o from 1pm-4pm from June 29th to Aug 14th. Daily program includes bike riding lessons, sports snack and water play headed by "Skills-n-Drill Bootcamp's" own Coach Chris Speziali! Call 516-359-7734 or register online at www.power-pals.com. (See attached file)
For Teens and College Students with ASDs: Summer Organization and Academics Readiness at the Fay J. Lindner Center for Autism and Developmental Disabilities' Advantage Care Diagnostic and Treatment Center. This short term "coaching" therapy program focuses on self-awareness, organizational skills and executive functioning over 8weeks with a 1:1 skill building program (45 minutes per session). Bring a blank planner and get ready to get organized! If you are interested, please contact Laurie Perlis, Psy.D., program coordinator for more information at 516-686-4440.
Kehilla Vocation Experience at Sid Jacobson JCC is a 6 week summer vacation and work experience rolled into one for 16-21 y/o special needs young adults. Program includes two vocational sites throughout the summer and one day a week for fun-filled day trips, with fitness, art therapy and drama included as daily activities. (See attached flyer.) Contact Lisa Warren at lwarren@sjjcc.org or call 516-484-1545 ext 786.
Camps:
Ramapo Camp:
Footholds for the Future, a prep program for young adults with special needs who require supportive services on the road to independence. This program is designed to provide an inclusive group living experience focused on building healthy relationships, learning essential life skills, and practicing job-related competencies. Ramapo will operate two 12-week sessions in 2009 and three 12-week sessions in 2010 at Ramapo's Rhinebeck, NY campus. Participants may enroll in multiple sessions. 2009 Program Dates for summer; June-September 2009 (start and end dates are flexible) and fall; September 2-November 24, 2009 For more information and to apply, contact Mike Fleet at footholds@ramapoforchildren.org
Get Your Feet Wet for children is a new one-week camp program now available in August for first timers to sleep-away camp. Swimming, crafts, hikes, cookouts, and sing-alongs--all the best activities of the summer along with a wide range of special events will be offered during Ramapo's inaugural "Get Your Feet Wet" program, set for Saturday, August 22 through Saturday, August 29, 2009. For more information, please call us at (845) 876-8423 or e-mail mkunin@ramapoforchildren.org .
Camp Ramapo for 5-10y/o for one to six week programs. See attached flyer for details.
Mid Island Y JCC Afternoon Day Camp for Special Needs Children 3-10 y/o-The perfect compliment to CPSE or CSE morning programs, with a 2-to-1 child/counselor ratio to enjoy the summer camp experience. Program runs from June 30th to Aug 19th and includes swimming in their Olympic sized pool, sports, outside playground, music, snack and more. Contact Doreen McIlwaine at 516-822-3535 or via email at dmcilwaine@miyjcc.org for more info and prices.
Great website to help your summer routine and travel:
An online resource that helps walk parents through outlining and creating an ABA program to use at home, camp, and during summer happenings. www.rethinkautism.com
An online guide of gluten free eating for all of Long Island--www.GlutenfreeLI.com
And last..
NYS PTA's June Advocacy Newsletter and Legislative Briefs
Available on the website, www.nyspta.org, The Advocacy Newsletter reports information on education; environment; special education; health and wellness; parenting and family life; family, school and community engagement; and cyber/media safety. The Legislative Briefs... reports the latest information on both State and Federal legislative activity from the Legislation chairman.
Membership Connections
To help network and share information, SEPTA offers personal recommendations to explore and judge for yourself. Please email us with any recommendations or networking requests you may have!
Remember, KNOWLEDGE IS POWER-Please forward this on, and send us info to share! It is Manhasset SEPTA's mission to empower with knowledge, supporting parents and staff to give every child excellence in education and quality of life.
Many thanks, Manhasset SEPTA
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