Tips for travel with autistic kids Taking the Kids by Eileen Ogintz - July 21, 2008 Wherever six-year-old Lennon Gunn goes—even to Germany to visit his dad—he's got his wooden-handled spatula in hand. His mom doesn't mind a bit and even carries spares. "It starts the dialogue," says Shannon Gunn. She explains to everyone she meets that he is autistic, and his spatula helps him feel more comfortable on unfamiliar turf. "I'm not afraid to explain," says Gunn, who works with parents of newly diagnosed children at the Village of Hope Center for Autism in San Antonio, Texas. We all know traveling with kids, especially young ones, is never easy. They don't want to put their blanket on the security belt at an airport. They get impatient in long lines, hate to sit still on airplanes, and may cry and spill their drinks. And the passengers, restaurant patrons, or hotel guests in the vicinity may not be sympathetic to the beleaguered parent's plight. That situation is only exacerbated for children who suffer from an autism spectrum disorder, a complex developmental disability that affects a person's ability to communicate and interact with others. These kids, who look perfectly normal, often are very anxious and find travel—the noise, the crowds, the lines, the disruption of their routine—particularly difficult, explains Dr. Lynda Geller, a psychologist and nationally known autism expert at the NYU Child Study Center. They may have a tantrum or make strange noises. The smallest thing might set them off. These kids, she adds, don't have the social skills to realize they are disturbing anyone else. "For these families, the judgment of others can make a very difficult situation far worse," Dr. Geller says. "They have no idea what that parent is going through." They just see a bratty child and inept parent, other parents who have autistic kids agree. "Think of standing in that parent's shoes," says Dr. Geller. "Be sympathetic rather than disapproving. How would you feel?" And no matter how well a parent prepares—as with any child—there can be a meltdown in a public place. That's what happened recently to North Carolina mom Janice Farrell, who ultimately was asked to get off an American Eagle flight with her two-year-old autistic son Jarett. "If they would have been a little more understanding, I think that none of this would have been a problem," she told local TV reporters. The situation caused an uproar in the blogosphere—more than 1,500 posts just on the Good Morning America website alone, after the family appeared there. American Airlines spokesperson Tim Smith said the bigger issue— besides the child's uncontrollable screaming—was that he wasn't buckled in his seatbelt, an FAA requirement for takeoff. "Every effort was made to help the passenger comply with safety regulations, " he said. "It was a last resort measure to deplane the two passengers." Smith added that it is possible for any passenger to note special needs in their customer record, which might have alerted the crew in advance to be prepared. Whatever airline you are flying and whatever special needs your family might have, that certainly is a good idea. Delta Airlines, in fact, is going a step further, developing special travel recommendations for families traveling with those who are developmentally disabled. The guidelines, prepared with Atlanta's Marcus Institute for Development and Learning, will soon be available on Delta's website, said Delta spokesperson Katie Connell. Autism is now the fastest-growing developmental disability, diagnosed in one in 150 births and impacting more than a million Americans, according to the Autism Society of America. The majority of those affected—more than 80 percent—are under 21, notes Peter Bell, executive vice president of Autism Speaks. Bell is himself the parent of an autistic teen. Bell says some families don't go anywhere, not even out to dinner, for fear of a situation like what happened to the Farrells; others, his own family included, opt "not to let autism rule our lives." Bell adds that his family of five has successfully navigated national parks, cross-country car trips, theme parks, ski resorts (many offer terrific adaptive programs), and Hawaii. "It takes extra time and practice," he says, and isn't often relaxing, but he encourages parents to try—and the rest of us to be more empathetic. Suburban Miami mom Katherine Revell, whose six-year-old son Eric has autism, said to encourage that empathy, she now hands out wallet-sized cards from the Autism Society of America that explain the disability to people, including airport security screeners. The good news is that there are more options for these families than ever before. The Autism Society of America, in fact, just brought 2,000 people to Orlando because Walt Disney World is so accommodating with front-of-the- line passes for autistic children who find it so difficult to wait, said spokesperson Marguerite Kirst-Colston, whose son has autism. Other theme parks, including SeaWorld and Busch Gardens, also have similar programs. Resorts such as Club Med and cruise lines such as Norwegian, Carnival, and Disney also try to be more inclusive in their organized activities. Adaptive Sports Centers are offering special camps and programming that enables these kids and their parents to get out and try activities—even whitewater rafting—that would be impossible otherwise. The Adaptive Sports Center in Crested Butte, Colorado, is having a special High Adventure Weekend for families with children who suffer from autism, while the National Ability Center in Park City, Utah, offers several weeklong day camps this summer. This allows autistic children to have a special program, the families to have some time with their other children, and the entire family to share vacation time together, said Ability Center spokesperson Ryan Jensen. The National Sports Center for the Disabled in Winter Park, Colorado, and Vermont Adaptive Ski and Sports also offer programs and activities appropriate for these families. As for Shannon Gunn, she and her twins just got back from Oregon and are looking forward to a Disney Cruise at Christmas. "Every time I take my child someplace," she says, "We all win." Preparing for your trip If you are traveling with a child with an autism spectrum disorder, here are some expert tips to make the experience easier: * Preparation is the best defense. Call ahead and inform the airline, hotel, resort, and cruise line of your child's condition and ask what special accommodations are available. Ask if you need a fridge, inside room, etc. Bring your child's own sheets, if you think that will make him or her more comfortable. * Select an environment your child can handle. * Talk online with other parents who have been there, done that. Simply Google the destination and "kids with autism" and you likely can connect with a local parents' group. * Book low season on a cruise or at a resort like Club Med so there will be fewer children and the staff will have more time to devote to yours. * Travel by car if you think flying will be too difficult. Opt to stay someplace where you can eat some of your meals in your room. * Be forthright explaining the situation to those you meet. * Develop stories, complete with pictures, that explain to your child exactly what you will be doing and where you are going. * Whatever happens, stay calm. Read Eileen's blog and more Taking the Kids columns at TakingtheKids. com. Flying can be a rough ride for autistic children, families By Rebecca Kaplan, USA TODAY With heightened security regulations and frequent delays, airplane travel can be an unpleasant ordeal for anyone. For a child who becomes anxious in close quarters, may have trouble communicating and is sensitive to loud noises, it can be terrifying. Those are common characteristics of autism, a developmental disability that affects about one in every 150 American children and one in every 94 boys, according to data from the Centers for Disease Control and Prevention. The condition has been getting more attention in the past five years through advocacy groups such as Autism Speaks and the Autism Society of America. But it still gets negative attention: Last week, syndicated talk radio host Michael Savage said on his show that 99% of the time, a child with autism was just "a brat who hasn't been told to cut the act out." The comment drew protests from the advocacy groups. His comments probably refer to the behavior autistic children can exhibit when they feel anxious, particularly in unfamiliar situations — they can have meltdowns that involve crying, screaming or kicking. Last month, Janice Farrell of Cary, N.C., and her 2-year-old autistic son, Jarret, were removed from their American Eagle flight after Jarret began crying and screaming uncontrollably. (The airline says Farrell also refused to stow her bag in the proper place, which she denies.) Airline travel, which is a necessity for many families, has many characteristics that can trigger such meltdowns. In addition to the break in the normal routine — which many autistic children find stressful because they have trouble anticipating what will happen — airplane travel involves sitting still for long periods and being surrounded by crowds, says Rebecca Landa, director of the Center for Autism at the Kennedy Krieger Institute in Baltimore. "Take all the issues (normal adults) have with flying, magnify that by 100, and put that into a child's body," Landa says. James Gillespie of Philadelphia, whose 14-year-old son, Brendan, has autism, says: "You will run into any number of well-intentioned people who just look at you as if you're a bad parent. There was a time that I was pretty defensive about it." Both Landa and Kelly Ernsperger, who counsels families in the greater Indianapolis area who are coping with autism, recommend preparing children in the days leading up to the trip by making sure they know exactly what to expect. "I encourage families to go online and try to get pictures of the airport terminals and planes and destination, " Ernsperger says. These pictures, along with conversations about what the child will be doing, help families create "social stories" so children are better able to anticipate exactly what will happen to them. Landa also recommends letting the child make some choices — such as choosing his seat — to defray some of the anxiety and creating simple rules to define the social situation. Gillespie made such a rule for Brendan to let him know what topics were off-limits on airplanes: terrorists, crashing and dying. He and other parents say snacks and earphones for a child's favorite music or movies are also a must. It's important to let the airlines know about the situation so they can accommodate the family as well. Many airlines have taken steps to make sure that flight attendants and airport employees are trained to assist customers with disabilities. "A lot of it is just being forthright and making sure you prepare your child, and you prepare those people who are going to come in contact with your child," says Peter Bell, executive vice president for Autism Speaks. The public can help too, Landa says. Her No. 1 rule: Don't judge. "It's best to think, 'How can I be helpful?' " she says, whether that is refraining from making a critical remark or offering to hold something for the family. Fringe autism treatment could get federal study By CARLA K. JOHNSON, Associated Press Writer Wed Jul 9, 7:46 AM ET CHICAGO - Pressured by desperate parents, government researchers are pushing to test an unproven treatment on autistic children, a move some scientists see as an unethical experiment in voodoo medicine. The treatment removes heavy metals from the body and is based on the fringe theory that mercury in vaccines triggers autism — a theory never proved and rejected by mainstream science. Mercury hasn't been in childhood vaccines since 2001, except for certain flu shots. But many parents of autistic children are believers, and the head of the National Institute of Mental Health supports testing it on children provided the tests are safe. "So many moms have said, `It's saved my kids,'" institute director Dr. Thomas Insel said. For now, the proposed study, not widely known outside the community of autism research and advocacy groups, has been put on hold because of safety concerns, Insel told The Associated Press. The process, called chelation, is used to treat lead poisoning. Studies of adults have shown it to be ineffective unless there are high levels of metals in the blood. Any study in children would have to exclude those with high levels of lead or mercury, which would require treatment and preclude using a placebo. One of the drugs used for chelation, DMSA, can cause side effects including rashes and low white blood cell count. And there is evidence chelation may redistribute metals in the body, perhaps even into the central nervous system. "I don't really know why we have to do this in helpless children," said Ellen Silbergeld of Johns Hopkins University's Bloomberg School of Public Health, who was invited to comment on the study to a review board of the national institute. Despite lawsuits and at least one child's death, several thousand autistic children are already believed to be using chelation (pronounced kee-LAY'-shun), their parents not content to wait for a study. Among those parents is Christina Blakey of suburban Chicago, who uses chelation and a variety of other alternative therapies, including sessions in a hyperbaric chamber, on her 8-year-old son, Charlie. Before he started chelation at age 5, Charlie suffered tantrums. When she took him to school, she had to peel him off her body and walk away. But three weeks after he began chelation, his behavior changed, she said. "He lined up with his friends at school. He looked at me and waved and gave me a thumbs-up sign and walked into school," Blakey said. "All the moms who had been watching burst into tears. All of us did." There is no way to prove whether chelation made a difference or whether Charlie simply adjusted to the school routine. Autism is a spectrum of disorders that hamper a person's ability to communicate and interact with others. Most doctors believe there is no cure. Conventional treatments are limited to behavioral therapy and a few medications, such as the schizophrenia drug Risperdal, approved to treat irritability. Frustrated parents use more than 300 alternative treatments, most with little or no scientific evidence backing them up, according to the Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, Md. "With a lot of mothers, if they hear about a treatment, they feel like they need to try it," said project director Dr. Paul Law. "Anything that has a chance of benefiting their child, they're willing to give it a shot." More than 2 percent of the children tracked by the project use chelation. If that figure holds for the general population, it would mean more than 3,000 autistic children are on the treatment at any time in the United States. Chelation drugs can be taken in pill form, by rectal suppository and intravenously. Dr. Susan Swedo, who heads the federal institute's in-house autism research and wants to study chelation, gained notoriety by theorizing that strep throat had caused some cases of obsessive compulsive disorder. The theory was never proved. She proposed recruiting 120 autistic children ages 4 to 10 and giving half DMSA and the other half a dummy pill. The 12-week test would measure before-and-after blood mercury levels and autism symptoms. The study outline says that failing to find a difference between the two groups would counteract "anecdotal reports and widespread belief" that chelation works. But the study was put on hold for safety concerns after an animal study, published last year, linked DMSA to lasting brain problems in rats. It remains under review, Insel told the AP. Insel said he has come to believe after listening to parents that traditional scientific research, building incrementally on animal studies and published papers, wasn't answering questions fast enough. "This is an urgent set of questions," Insel said. "Let's make innovation the centerpiece of this effort as we study autism, its causes and treatments, and think of what we may be missing." Last year, the National Institutes of Health spent less than 5 percent of its $127 million autism research budget on alternative therapies, Insel said. He said he is hopeful the chelation study will be approved. Others say it would be unethical, even if it proves chelation doesn't work. Federal research agencies must "bring reason to science" without "catering to a public misperception," said Dr. Paul Offit, chief of infectious diseases at the Children's Hospital of Philadelphia and author of an upcoming book on autism research. "Science has been trumped by politics in some ways." Offit is concerned vaccination rates may fall to dangerous levels because some parents believe they cause autism. Dr. Martin Myers, former director of the federal National Vaccine Program Office, said he believes giving chelation to autistic children is unethical — but says the government can justify the study because so many parents are using chelation without scientific evidence. "It's incumbent on the scientific community to evaluate it," he said. Actress Jenny McCarthy, whose bestseller "Louder Than Words" details her search for treatments for her autistic son, Evan, told thousands of parents at a recent autism conference outside Chicago that she plans to try chelation on him this summer. "A lot of people are scared to chelate ... but it has triggered many recoveries," she said. But those claims are only anecdotal, and there are serious risks. Of the several drugs used in chelation, the only one recommended for intravenous use in children is edetate calcium disodium. Mixups with another drug with a similar name, edetate disodium, have led to three deaths, including one autistic child. A 5-year-old autistic boy went into cardiac arrest and died after he was given IV chelation therapy in 2005. A Pennsylvania doctor is being sued by the boy's parents for allegedly giving the wrong drug and using a risky technique. No deaths have been associated with DMSA, which can cause rashes, low white blood cell count and vomiting. It is also sold as a dietary supplement, which is how some parents of autistic children get it. A Food and Drug Administration spokeswoman said the agency is "is looking into how these products are marketed." Hands On Learning For The Visually Impaired ScienceDaily (Jun. 9, 2008) — European researchers have made it easy for software developers to build educational tools that let pupils collaborate to see, hear – and now also feel – what is on the computer screen. When you think of the solar system you probably picture a textbook diagram: nine planets, different sizes and colours, all circling the bright yellow sun. But how can a visually impaired child take in this information? How can they grasp how the solar system works? European researchers have developed a computer program that lets sighted and visually impaired pupils explore space together. Using a special device similar to a robotic arm, a visually impaired child can move around the solar system and hear about the planets. Sighted children can guide their visually impaired partners. As they move the mouse, the pressure and resistance in the robot arm gently nudges the visually impaired user in the right direction. Visionary research The space explorer is just one of many applications developed by the EU- funded MICOLE project which is bringing multi-modal interfaces into the classroom. The software is one of the first releases of multi-modal educational computer programs. It allows sighted children and the visually impaired to collaborate, helping to remove some of the barriers that the latter group faces every day in mainstream education. Multi-modal computing is on the rise. Soon a third sense could be added to the sight and sound that computers currently use as their mode of output. Haptic devices, such as the robot arm, enable users to control computers as if they were using a mouse. Such devices also provide output – of movement, pressures or even raised bumps to deliver information to the user via the sense of touch. This output is exploited in another MICOLE application. Current software drawing software allows pupils to create pictures, but the lines are in relief. Using the haptic device, they can actually feel the picture. As they move a virtual stylus over the picture on the screen the pupils can sense the raised lines through the device communicated to their fingertips. Collaborative design “These applications have been very welcomed in our test classrooms,” says project coordinator Roope Raisamo. “It has been wonderful to see visually impaired and sighted children really working together and sharing the same experiences and opportunities. “Our aim was to allow blind people to create, manipulate and share information using hearing and touch to replace use of vision, and to work with other blind and sighted people. We want to see visually impaired people take a full role in society and work at an equal level with sighted people.” Before MICOLE, very little was known about how multi-modality could be used when blind people work alongside those with full sight. But through its user-centred approach – lots of observation, focus groups, consultation and field-testing – the MICOLE partners have greatly added to our understanding about such collaborative work. “Adding the sense of touch to information and communication technology is just getting to the point where it can be commercialised,” Raisamo continues. “The first people to benefit are people with disabilities, especially people who are blind or have visual impairment. The more senses you can use, the more multi-modal your computer interface, the more inclusive the technology can be.” Much of the knowledge that the team has built up during the project's three years have been incorporated into guidelines for software developers on how to develop successful applications for collaborative learning. Raisamo believes the project has increased the potential for successful commercialisation of multi-modal software in all fields. A feeling for the future MICOLE’s researchers have done far more than publish theoretical documents and produce a few prototype applications. Their main output comes in the form of the ‘MICOLE architecture’ and an accompanying software development toolkit. The architecture is like a high level programming language. It provides the virtual environment – all the processes and mechanisms for software applications to function in a multi- modal fashion. It is designed so that software developers can quickly build new multi-modal applications for the visually impaired and can be used for applications in widespread disciplines including medicine, education or ‘edutainment’. “We've made it an open source architecture to encourage more people to access it, spread it, and adapt it for their own requirements without worrying about licenses or intellectual property,” says Raisamo. So far 14 organisations from outside the project have downloaded the architecture and toolkit files in the first six months since these were made available for download on the project's website. “This is encouraging,” Raisamo says. “We know that several groups are working on new applications and we hope that the market will take off soon.” Reachin Technology, a key MICOLE partner and a distributor of the haptic robot device, could be one of the first to sell multi-modal software based on MICOLE’s research. Fully functional Multi-modal interfaces can support people with many disabilities because if one of the modalities is missing, the system remains usable. “If multi-modal applications are used widely and match the needs of different users, they could narrow the gap between sighted and impaired children,” says Raisamo. MICOLE, which received funding from the EU's Sixth Framework Programme for research, ended in August 2007. However, the partners involved continue to push research and development in the field. Raisamo's team is currently working with local schools to develop new applications based on the architecture – one that explores physical phenomena, another the natural sciences. 10 Tips for Ending the School Year by Pat Howey, Advocate 1. Visit the new school or classroom. Will your child make a major transition next fall? Will your child be moving from preschool to kindergarten, from elementary to middle school, or from middle school to high school? Plan to take your child to visit the new school or classroom before the first day of school. 2. Review your child’s IEP and progress. Did your child make progress this school year? Did the school properly implement the IEP? Does the IEP adequately address your child’s needs? Do your child’s Goals prepare your child for further education, employment, and independent living? 3. Ask for an IEP Team Meeting if necessary. Did you answer “No” to any of the questions above? Ask for an IEP Team Meeting to resolve these concerns. Do not let another year go by with an inappropriate IEP. 4. Prepare for the IEP Team Meeting. Prepare a list of your child's present levels of performance. The list includes you child's strengths and the areas that are challenging. Look carefully at this list and you will better understand what your child needs. Add these needs to your list of present levels of performance. You can also add Goals, Related Services, Assistive Technology, and anything else that your list justifies as an educational need. 5. Say "Thank You" to those who helped. Did your child have a great school year? Was this success due to a wonderful teacher, a helpful classroom aide, or a thoughtful bus driver? Say “thank you” to those who helped your child succeed. Look at what made this a good year for your child. Add that information to the list of your child’s present levels of performance. 6. Give your information list to the IEP Team before the meeting. Do not surprise other members of the IEP Team. At least one week before the meeting, give a copy of your list to each member of the IEP Team. Take extra copies to the meeting for anyone who forgets to bring their copy. Your IEP Team Meeting will go faster and smoother if everyone has your list ahead of time. 7. Ask for a copy of any information that has been given to other members of the IEP Team. You do not want to be surprised. Ask for copies of all information the IEP Team will discuss. You cannot be a full team member if you are left out of the loop. Ask for things like copies of teacher reports, evaluation reports, and group achievement testing. 8. Ask the IEP Team to address Extended School Year (ESY). ESY Ask the IEP Team to address ESY early in the second semester. If there is disagreement about whether your child needs an ESY, you will need enough time to resolve this with one of the due process procedures available. 9. Find out what summer educational resources are available for your child. An ESY is not the same as summer school. Summer School is usually a generic program that is not designed to meet your child’s individual needs. An ESY program is intended to meet the specific educational needs of your child as identified in his or her IEP. Make sure you know what services the school is offering! 10. Determine whether your child needs a new evaluation. Does your child need new evaluations? Are you unsure whether your child has made adequate progress? Achievement testing at the beginning and end of every year will give objective answers about your child’s progress. (See Chapter 8, Your Child’s Evaluation, in Wrightslaw: From Emotions to Advocacy, 2nd Edition). www.wrightslaw.com/howey/10tips.end.sch.yr.htm Bookshare.org Partners With Don Johnston to Provide Free Text Reader for Print Disabled Students Read:OutLoud® Bookshare.org Edition 'Text Reader' Will Provide Technology Access To Thousands of Online Educational Materials FOR IMMEDIATE RELEASE Contact: Ann Harrison, Benetech 415-637-5262, ann.h@benetech. org Contact: Valerie Chernek, Don Johnston, Inc. 410-871-2670 vchernek@donjohnston.com March 13, 2008, Palo Alto, CA - Volo, IL - Bookshare.org and Don Johnston have announced a partnership to provide qualified print disabled students with a free text reader to access electronic books from the Bookshare.org library. This technology access partnership announced at the 2008 CSUN conference in Los Angeles, CA, will serve an estimated 1-3% of the total K- 12 student population who receive special education services and qualify under the 1996 Chafee Amendment. Beginning at the start of the 2008-09 school year, qualified students will have the opportunity to use Don Johnston’s Read:OutLoud Bookshare.org Edition text reader (Windows Version) to access more than 36,000 books, magazines and newspapers in the Bookshare.org library. The Read:OutLoud Bookshare.org Edition text reader offers embedded reading comprehension strategies and instructional supports that align with state educational standards. The text reader software includes audio feedback, electronic highlighting and note-taking features that allow students to effectively capture ideas. A Mac version will follow in 2009. “Don Johnston and his products have a solid reputation in the special education community,” says CSUN keynote speaker Jim Fruchterman, CEO of Benetech, the Palo Alto, California-based nonprofit organization that operates Bookshare.org. “We chose Read:OutLoud because of its strong support tools for students with reading disabilities and its ability to read DAISY files that have the richness that comes from the NIMAS publisher files. Benetech and the team at Don Johnston are working closely together to create more equality for students with learning disabilities and special needs.” The goal of this partnership is to help eliminate barriers for print disabled students and provide the tools needed to ensure access to educational texts. Bookshare.org offers digital books produced from the National Instructional Materials Accessibility Standard (NIMAS) and delivers them to students in the BRF Braille file format and the Digital Accessible Information System (DAISY) standard for Digital Talking Books. Don Johnston’s Read: OutLoud Bookshare Edition text reader gives students better access to books and effective reading instruction through a direct connection to Bookshare.org’ s digital texts. "Now that students with the most significant print disabilities will have free technology access to Bookshare.org’ s library of texts, we want to make sure that they will also benefit from using our technology to improve their reading comprehension skills and study habits,” says Ruth Ziolkowski, President of Don Johnston. # # # About Bookshare.org Bookshare.org is an online community that allows people with print disabilities to legally download books and periodicals to be read as Braille, large print or synthetic speech. In October of 2007, Bookshare.org received a $32 million five-year award from the U.S. Department of Education to significantly expand the availability of accessible digital books and software for reading those books. Over the next five years, Bookshare.org expects to add over 100,000 new book titles and textbooks to its collection. About Don Johnston Incorporated Don Johnston empowers educators with supplemental instruction and intervention solutions to help struggling learners build core literacy skills with confidence. Since 1980, the company has partnered with literacy experts, psychologists, teachers, researchers, and scientists to develop over a dozen educational technology access products. The company also publishes Start-to-Finish® , a collection of paperback, audio and computer books to engage struggling readers and ESL learners. 1-800-999-4660 - www.donjohnston.com Resource Links: CSUN – California State University at Northridge Annual International Technology and Persons with Disabilities Conference - www.csun.edu/cod/conf/2008/ American Foundation for the Blind - Chafee Amendment: Initiated by the late Senator John J. Chafee (R-RI), enables students with visual and print disabilities to qualify for specialized technology to access print materials. http://www.afb.org/Section.asp? SectionID=44&TopicID=16&SubTopicID=33&DocumentID=1785 US Copyright Law: http://www.loc. gov/nls/referenc e/factsheets/ copyright. html Learn about NIMAS. Watch NIMAS 101: What Educators Need to Know: www. donjohnston.com./prof_services/nimas/index.html Summer is Here. Good Tips on helping kids stay safe. Wriiten By: Carin Yavorcik, ASA Kid CallCard ensures phone numbers are always nearby. In a large crowd (e.g., a major sporting event, the shopping mall, an amusement park, the beach, etc.), an accidental separation between parents (or chaperones) and children can and often does occur. With The Kid CallCard, the lost child is usually reunited in 5 minutes - as opposed to 35 or 45 minutes, or longer. The Kid CallCard facilitates a very practical, common-sense idea: A child should have the cell phone numbers of chaperones in case an accidental separation occurs. The Kid CallCard is a two-sided waterproof card that holds up to 10 cell phone numbers on one side, and is personalized with your child's first name on the other. It's the size of a credit card, and provides space for two primary cell numbers (usually Mom and Dad), and up to 10 secondary cell numbers for grandparents, aunts, uncles, family friends, etc., with whom your child attends outings. Learn more or purchase a card at http://kidcallcard.com/. Safety When Out Tips * Attach a dog tag with your child’s name, your name, your phone number (preferably cell phone), and the word “autism” to the inner laces of your child’s shoe. * Write out your child’s name and phone number and have him practice reciting it. * Carry a recent photo of your child in your wallet in the event he wanders away from you. For more ASA Tips of the Day, visit www.autism-society.org CEC SmartBrief May 22, 2008 http://r.smartbrief.com/resp/lhwQsndNvMyZsiCibSlrdnBq TODAY'S HEADLINES CURRICULUM & INSTRUCTION * Virginia to merge schools for students with vision, hearing impairments * Man with autism graduates with honors, 3.92 GPA * Musical rhythms help Navajo students learn new concepts * School cooking classes a way for students to learn healthy eating EDUCATIONAL LEADERSHIP * Former professor tutors immigrants despite hearing impairments * Education college teaches students how to integrate lessons on diversity TECHNOLOGY TRENDS * Online credit-recovery courses offer struggling students more options POLICY NEWS * Wisconsin Supreme Court declines to hear special education case * Staff shortages lead Texas institutions to rehire troubled workers * Coca-Cola, Special Olympics renew partnership EYE ON EXCEPTIONALITIES * Early identification, therapy may help researchers prevent autism * Woman with perfect memory curses ability CEC SPOTLIGHT * Be a presenter at CEC's 2009 Convention & Expo in Seattle! * Help teachers use the power of co-teaching Follow the link below to read quick summaries of these stories and others. r.smartbrief.com/resp/lhwQsndNvMyZsiCibSlrdnBq Sensory treatment yields promising results for children with autism Friday, April 25, 2008 Written by Anna Nguyen For the Temple Times CONTACT: Eryn Jelesiewicz <dobeck@temple.edu> 215-707-0730 Parents of children with autism are increasingly turning to sensory integration treatment to help their children deal with the disorder, and they’ re seeing good results. In 2007, 71 percent of parents who pursued alternatives to traditional treatment used sensory integration methods, and 91 percent found these methods helpful. A new study from Temple University researchers, presented this month at the American Occupational Therapy Association’s 2008 conference, found that children with autistic spectrum disorders who underwent sensory integration therapy exhibited fewer autistic mannerisms compared to children who received standard treatments. Such mannerisms, including repetitive hand movements or actions, making noises, jumping or having highly restricted interests, often interfere with paying attention and learning. The children assigned to the sensory integration intervention group also reached more goals specified by their parents and therapists, said study authors Beth Pfeiffer, Ph.D., OTR/L, BCP, and Moya Kinnealey, Ph.D., OTR/L, from the Occupational Therapy Department in Temple University’s College of Health Professions. The children made progress toward goals in the areas of sensory processing/regulation, social-emotional and functional motor tasks. Sensory integration is the ability of the brain to properly integrate and adapt to the onslaught of information coming in through the senses. Dysfunction in this area makes it difficult for people with autism to adapt to and function like others in their environment. They may be hypersensitive to sound or touch, or unable to screen out distracting noise or clothing textures. Their response might be impulsive motor acts, making noises or running away. Pfeiffer and Kinnealey are part of a group of researchers seeking to bring more scientific understanding to occupational therapy using a sensory integration approach. “It’s been heavily documented that children on the autistic spectrum have differences in the way they process sensory information and respond motorically,” Pfeiffer said. “While more families are seeking out the sensory integration approach because of its positive results, more research is needed to scientifically establish its effectiveness.” Children receiving sensory integration therapy typically participate in sensory-based activities to enable them to better regulate their behavioral responses to sensations and situations that they find disturbing or painful. A child who is oversensitive to light touch may enjoy rolling and playing in a giant foam pillow, after which he might be more able to calmly explore, touch and play with other textures. This in turn makes self-care such as dressing and washing and classroom activities that require touch more manageable. Interpreting the child’s behavior as intentional and controllable and not recognizing the underlying cause and hypersensitivities is common in educational and home settings, but is an approach that Kinnealey discourages as stressful for the child. The study took place this past summer at a camp near Allentown, Pa., for children with autism. Participants were between the ages of 6 and 12 years old and diagnosed with autism or Pervasive Developmental Disorder–Not Otherwise Specified (PDD-NOS). One group (17) received traditional fine motor therapy and the other group (20) received sensory integration therapy. Each child received 18 treatment sessions over a period of six weeks. A statistician randomly assigned the participants to groups; this information was provided to the project coordinator at the site. The primary researchers were blinded to group assignment and served as evaluators before and after the study. Parents were also blinded to the interventions that their children were assigned to and were not on site. However, there was the potential for the verbal children to talk about the activities that they participated in, which may have influenced the blinding for the parents. For their outcome data, researchers used a series of scales that measure behavior. While both groups showed significant improvements, the children in the sensory integration group showed more progress in specific areas at the end of the study. “This pilot study provided a foundation for how we should design randomized control trials for sensory integration interventions with larger sample sizes,” Pfeiffer said. “Specifically, it identified issues with measurement such as the sensitivity of evaluation tools to measure changes in this population. “Sensory integration treatment is a widely used intervention in occupational therapy. There is a real need for research such as randomized control trials to validate what we are doing with sensory integration in the profession,” she added. The other presenter was Kristie Koenig, Ph.D., OTR/L, Steinhardt School of Culture, Education and Human Development, New York University. Funding was provided by Autism Speaks, which is dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism and raising public awareness about autism and its effects on individuals, families, and society. CEC SmartBrief May 13, 2008 Follow the link below to read quick summaries of these stories and others. http://r.smartbrief.com/resp/kDlAsndNvMxjaACibSlrQLAE TODAY'S HEADLINES CURRICULUM & INSTRUCTION * Multiple sclerosis may affect children's learning * Museum helps people with visual disabilities experience art * NCLB restructuring mandates don't necessarily spark radical change * Middle school says energy drinks and academics a bad mix EDUCATIONAL LEADERSHIP * Obituary: Professor championed rights for people with disabilities * Letter: Shortage of special-educators forces district to rehire retirees TECHNOLOGY TRENDS * Lawmaker calls for more accessible Internet video * Discourage cheerleading to engage more students in online discussions POLICY NEWS * Federal autism case resumes * Word "say" sparked trademark lawsuit against special-ed company EYE ON EXCEPTIONALITIES * Culture clash arises over student-teacher's service dog * Wisconsin community to build accessible playground CEC SPOTLIGHT* "Using the National Gifted Education Standards for University Teacher Preparation Programs" * Be a presenter at CEC's 2009 Convention & Expo in Seattle! Pete and Pam Wright: Founders of Wrightslaw, www.wrightslaw.com At Wrightslaw, our mission is to provide parents, advocates, educators, and attorneys with accurate, up-to-date information about special education law and advocacy so they can be effective catalysts. You will find articles, cases, newsletters, and resources on dozens of topics in the Advocacy Libraries and Law Libraries. You may subscribe to The Special Ed Advocate, the free weekly e-newsletter about special education legal and advocacy topics. Here is a sample of what is on the site. Spring is here and the end of the school year is fast approaching. Yes, it's IEP season. IEP meeting: Do you understand what your role is at IEP meetings? Do you know how to request that an IEP be revised? Do you know that the IEP must include measurable goals? Do you know that the school must provide you with progress reports on a regular basis? Do you know the required members of your child's IEP team? Do you know who may be excused from IEP meetings, when, how? Are there circumstances when a child's IEP may be changed without convening an IEP meeting? Does the IEP team have to address a child's behavioral needs in the IEP? Don't miss the special tip at the end of the newsletter. It's time to take a closer look at the legal requirements of IEPs. If you have questions about IEPs, please look at our new multi-media training program, Legal Requirements of IEPs. The program shows you exactly what the law requires. In this issue of the Special Ed Advocate you'll find answers to your questions about IEPs,and how to use tactics and strategies to get quality services in your child's IEP. You'll even find a unique way to introduce your child to the IEP Team. IEPs for Children with Behavior Problems In What You Need to Know About IEPs for Children with Behavior Problems, advocate Pat Howey answers questions from parents whose children have behavior problems. IDEA 2004 and the federal special education regulations include specific requirements for IEPs of children whose behavior impedes their learning or the learning of other children. These requirements include training teachers to use positive behavioral interventions and strategies. In What You Need to Know About IEPs for Children with Behavior Problems, Pat describes these requirements and offers strategies parents can use to request help. Read more articles by Pat in Ask the Advocate. IEP Members and IEP Team Attendance "I understand that parents are no longer required participants on their child's IEP team." "Are teachers excluded from IEP meetings?" Question: Does it make sense that a child's IEP team would not include the child's parents and teachers? If you answer, NO, you're right! Amazingly, we get questions like this every week. According to IDEA 2004, Section 1414(d)(1)(B), the IEP team must include parents and teachers. Read What You Need to Know About IEP Team Members & IEP Team Attendance to learn about IEP team members and IEP team attendance, when team members may be excused from a meeting, and what parents and the school district must do before a team member may be excused. IEP Tips: What to Do at an IEP Meeting Do you feel overwhelmed or intimidated at IEP meetings? Are your confused about your parental role?IEP Meeting In IEP Tips: What to Do at an IEP Meeting, Anne Eason and Kathleen Whitbread teach you how to prepare for IEP meetings and strategies you can use to be a more effective participant in the IEP process. * Send your agenda to the district a few days ahead of time. * Write to the school and request that all reports, evaluations, and proposed goals and objectives to be given to you at least 5 days ahead of the meeting. * If the school did not provide records, evaluations, or proposed IEP goals ahead of time and you feel your ability to participate in the meeting has been compromised, consider rescheduling the meeting (with the utmost of tact and class). * Be an active listener. * Bring your child to the IEP meeting. See what's available in the Wrightslaw Store. Introduce Your Child to the IEP Team IEP and Inclusion Tips for Parents & Teachers recommends the following: * Discuss IEPs with your childIEP video from YouTube * Ask your child what he wants in his IEP * Bring your child (and his siblings, for support) to the IEP meeting A Unique Approach Some parents have used video to introduce their children - and the child's "unique needs" to the IEP team. A United Vision for Success By Kelly Henderson Hagen May 4, 2008 The FCCPTA special education committee has watched with interest as implementation of Positive Behavior Support has spread across the county. We applaud a program that is truly inclusive and benefits all children in schools. Because children with disabilities thrive when schools offer consistent and clear expectations, our children may particularly benefit without having to be singled out. Our fourth article in our series discusses the advantages that PBS can offer when faithfully implemented. This is undoubtedly familiar to you all; we want you to know that you have our full support as you work on your own PBS systems. Positive Behavior Supports: A True Promise for All? Positive Behavior Support holds much value for students with disabilities, their families and the staff who serve them. Schoolwide Positive Behavior Support (PBS) is a comprehensive, systems approach to establishing the social culture and behavioral supports needed for all children in a school to achieve both social and academic success. It is not a packaged curriculum, but a framework that defines core elements that can be achieved through a variety of strategies (Sugai & Horner, 2007). Since 2002, 107 FCPS schools (74 elementary and 33 secondary) have been trained in the use of PBS, and enthusiasm for adoption and implementation among school staff continues to build. What is Positive Behavior Support? PBS applies a three-tiered approach to identifying and addressing the needs of ALL students and staff in a school. The first and broadest tier is primary prevention of serious behavioral and social challenges. In PBS, primary prevention involves establishing rules, routines, and physical arrangements that are developed and taught by school staff to prevent initial occurrences of problem behavior. Behavioral expectations for the entire school are defined, and routines for facilitating those expectations are implemented. In some cases, the physical arrangement of a particular part of the school may be adjusted. Examples include altering the table configuration in the cafeteria or placing a center line down the hallway to facilitate better traffic flow between classes. The design and delivery of an acknowledgement system (e.g., rewards and reinforcement) for students who meet behavioral expectations is an essential component of schoolwide primary prevention efforts, as is a continuum of consequences for addressing behavioral violations. In addition to the continuum of positive and negative consequences (i.e., rewards, reinforcers) , PBS also relies on continuous active supervision or monitoring across all school settings, and continuous collection, monitoring, and use of data for decision-making. About 80% of a school population will positively respond to schoolwide primary prevention efforts. The next tier of secondary prevention is designed to provide intensive or targeted interventions to support students who are not responding to primary prevention efforts and are at risk for engaging in more serious problem behavior. Secondary support is typically delivered to targeted small groups of 10 or more students, though simple individualized interventions may also be used. Examples of targeted interventions include social skills groups and mentoring programs. The narrowest tier encompasses tertiary prevention practices for those students with the most significant behavioral problems. Individualized tertiary supports involve a process of functional behavioral assessment ( FBA ) and a Behavior Intervention Plan (BIP) comprised of individualized, assessment-based intervention strategies. These interventions must include teaching and reinforcing new skills as a replacement for problem behaviors, and systemically altering the environment in which the problem behaviors occur. For example, limiting the number of school supplies available to the student at his desk may help to prevent the inappropriate use of a ruler to duel his tablemate. In some cases, the BIP may also include emergency procedures to ensure safety and rapid de-escalation of severe episodes or major ecological changes, such as changes in school placements. Of course, changes in placement of a student with a disability must involve the IEP team. What does a PBS school look like? Because there is no one model for PBS, schools use varied approaches to implementation based on their individual needs. Evidence of PBS initiatives is evident immediately. Visitors often remark on their impression of orderliness and calm structure when first entering a school with PBS. Physical reminders of the behavioral expectations reinforce schoolwide routines. An example can be found in the entranceway mural to Centreville Elementary where features related to the school’s four keys to success (respecting self, others, learning, and school) are prominently displayed. Sheri D’Amato, library specialist and one of the school’s PBS coaches, reports that schoolwide expectations are posted throughout the common areas of the school- hallways, cafeteria, library, gym, and that the names of classes winning the “golden key” classroom incentive are displayed prominently. Staff members carry yellow paper keys to success on lanyards ready for on-the-spot award to individual students who display respectful behavior. At Glasgow Middle, students who are “living above the line” receive an incentive card which can be placed in a box; names selected once each quarter for school wide recognition. The incentives can be earned in classrooms or common areas alike, and are bestowed by any adult in the school including custodians, clerical staff, and bus drivers. Glasgow special education teacher Helen McNeill finds the schoolwide incentives- being recognized during announcements, pencils, cookies, and certificates- simple but effective tools for recognizing those students who go above and beyond. Rewards are typically given out during the times that students have trouble focusing and staying on task, such as just before the long holiday breaks, in an effort to maintain high behavioral expectations during those challenging periods. Since the school adopted PBS, Glasgow parent and FCPS school psychologist Anne Brosnan has witnessed a remarkable improvement during transitions between classes since the school focused emphasis on expectations for hallway behavior. More teachers are “out there in the halls, fewer bottlenecks, and kids going where they are supposed to.” Students are recognized and acknowledged for meeting the expectations and more kids get to class on time. A former Glasgow student now in high school recently reported back that she now misses the orderliness of between class transitions. Typically a committee of administrators, teachers, and student services personnel oversees the design and implementation of PBS in the school, helps to facilitate a smooth introduction, and maintains momentum and consistency in implementing the specific schoolwide practices. Committees not only help to set PBS practices into motion, they also meet regularly to evaluate progress and problem solve regarding particularly challenging situations or individuals. Centreville Elementary’s PBS team meets regularly and examines data on disciplinary referrals to create or target interventions for those students who are not consistently meeting the behavioral expectations. Like any comprehensive approach to schoolwide change, truly effective implementation of PBS takes time, consistent support and on-going attention. Schools at all stages of implementation do report impressive results. Following Glasgow Middle School ’s first year of intensive focus on hallways behavior, disciplinary referrals for all students dropped 47%. Helen McNeill attributes such success to a real change in the school’s culture that includes developing a “common language and vision that helps all of us to living harmoniously in our environment”. Direct instruction to all students about how to meet expectations was also key. At Liberty Middle School , a similar shift has occurred. Parent Mary Zempolich reports that the nature of the relationship between staff and students has changed drastically since adoption of PBS and the expectation that Liberty Lions are respectful, responsible and right on time. The new system encourages staff to “look for the kids doing good things, rather than being punitive and taking points away. … The school is always doing something to encourage good behavior. The positive atmosphere is so much better… The staff are happier, students are happier.” What does PBS contribute to the delivery of appropriate special education and related services to students with disabilities and their families? With an emphasis on primary prevention, PBS clearly contributes to improvement of the whole school and all the children or youth and adults there. Debra Lane , principal of Rolling Valley Elementary appreciates that PBS focuses on positive behavior for all children. “It is school wide, focuses on positive skills for students, praises students, and there is buy-in.” But does PBS offer any added value for students with disabilities, who may already have individualized programs in place? Absolutely, affirm administrators, teachers, and parents who implement PBS. Some of the features that make it a great fit for all students are exactly those that benefit students with disabilities. These features can be characterized by three essential qualities- clarity, comprehensiveness and competence. Examples of how PBS schools incorporate these qualities are detailed below: 3 C’s of PBS- Clarity, Comprehensiveness and Competence Clarity- All students, but especially students with disabilities, benefit from a clear and shared understanding about how they are expected to behave and what will occur if they do or do not. PBS provides a structure for making rules and consequences uniform and unambiguous. Expectations are posted throughout the school and are reinforced continually by all school personnel including teachers, administrators, and support staff. Some schools use very concrete tools to help students distinguish differing expectations for behavior; elementary schools have designated red zones, where the expectation is silence, yellow zones where low voices and whispering are acceptable, and green zones such as the playground where outside voices are OK. At Centreville Elementary, the implementation of common expectations across the school has helped students with disabilities who participate in multiple classrooms. In addition, the PBS team developed well-received lesson plans for all teachers to use to directly instruct the expectations at the beginning of the school year. Often, attention is given to securing buy-in for the schoolwide acknowledgement system. Rolling Valley ES inaugurated its 2nd year of PBS implementation with a pep rally during which two students from each classroom were recognized for their outstanding demonstration of the Three Rs: Be Responsible, Be Respectful, and Be Ready. The rally marked the kick-off of a Rockin’ Robin-themed contest for penning a new school theme song incorporating the expectations to the tune of the classic song. Comprehensiveness- The three-tiered PBS approach lends itself to meeting the needs of all students. Processes and resources support the broad and basic needs of the majority of students. But mechanisms are in place for identifying and meeting the more targeted needs of students who are not meeting the schoolwide expectations with those universal supports. School personnel in one school use a system of report referral forms to provide immediate information used by the school’s intervention team in targeting physical areas, routines, or subgroups of students for more intensive supports. After reviewing referral data and finding that boys of a certain age were struggling to meet expectations, a mentoring program was established to address the more intensive needs of this small group. At Liberty Middle, administrators and special education staff are in constant contact with each other in an effort to identify and prevent problem behaviors. Regardless of formal identification or disability category, special education staff step in to avert potential problems. Teachers are aware of which colleagues to contact with a concern and feel confident that issues will be addressed and they will be supported in trying to meet the needs of their students. Parent Mary Zempolich reports that the ability to well serve students with significant needs has improved under PBS. The implementation of PBS has occurred simultaneously with an expansion of Liberty ’s wide offering of afterschool programs and those two programs provide support for many students with more intensive needs who may be at risk of educational failure. Students in the Preschool Autism Classes at Centreville Elementary also participate in aspects of schoolwide PBS. The incentives themselves have been adapted to better meet their needs, and PAC students are very motivated by the schoolwide incentives. Competence- Critical to the success of PBS is the direct instruction of the skills necessary for students to meet the schoolwide expectations for behavior. For students with disabilities, this explicit teaching of social and related skills is a proven approach. At Centreville Elementary School , the 4 keys to success (respect for self, others, learning, and the school) are taught by classroom teachers at the beginning of the school year. Lesson plans target the differing expectations in the common areas of the school including hallways, cafeteria and playground. Teachers at Glasgow Middle use a common homeroom period to teach skills related to the expectations. A refresher lesson was developed this year for eighth graders who were taught the core skills last year and materials for teacher-led discussions and other instructional activities have been developed. Liberty Middle students receive booster lessons as needed throughout the school year. The greater focus on shared responsibility for all students also provides an opportunity for increasing competence of school staff. In some schools, the direct instruction and schoolwide incentive and consequences have presented an opportunity for general education teachers to communicate more frequently and openly with their specialist colleagues. This increased collaboration helps staff build skills for meeting the needs of students with disabilities, and expectations for the success of all students rise. Collectively, these three qualities of PBS benefit students with disabilities and their families within the context of improved school discipline for all students. When implemented well, PBS is a true win-win situation for everyone. Resources on Schoolwide Positive Behavior Support: Dr. Kathy McQuillan, FCPS PBS Educational Specialist, Kathleen. McQuillan@fcps.edu Sugai, G. & Horner, R. (2007). Is School-wide Positive Behavior Support an Evidence-based Practice? Report available at: http://pbis. org/files/101007evidencebase4pbs.pdf The National Technical Assistance Center on Positive Behavioral Interventions and Supports: pbis.org Overcoming Autism A local high school student succeeds with lots of help from parents and teachers. By David Schultz/The Connection Tuesday, April 08, 2008 DANIEL STARR runs swiftly up the stairs and comes back down with a menagerie of miniature ships, trains and airplanes, thousands of them, each meticulously crafted out of modeling clay. A junior at Yorktown High School, Daniel made each of the figurines by hand and the amount of time he spent on them is readily apparent; many of the ships feature detailed international flags no larger than a quarter of an inch. They’ve taken him years to amass but, according to Daniel’s mother, Victoria, he can make one “almost without looking.” “He’ll sit there with the TV on and his fingers are going a mile a minute and all of a sudden he’ll have this little critter,” she said. Daniel is a tall, exuberant and talented 18 year old who likes basketball, swimming, tugboats, SpongeBob SquarePants, the movie Cars and anime, not necessarily in that order. Daniel is also autistic. He has difficulty communicating with other people and at times gets lots in his own train of thought. When Daniel was a toddler, doctors told his parents that he’d never be able to live independently. But now, a decade and a half later, Daniel is thriving. He is engaged in numerous extracurricular activities and is set to become the first graduate of Yorktown who has been diagnosed as autistic. “We’ve always pushed Danny to get to the next level and he’s always exceeded our expectations,” Victoria Starr said. “When we thought it was going to be hard he would just do it.” IN RECOGNITION of his accomplishment, Daniel was given the Yes I Can! award from the Council for Exceptional Children, an international organization for special education teachers, at a ceremony in Boston last week. The awards were developed in 1982 to honor students who achieve despite their disabilities. “Students with disabilities often have outstanding accomplishments but are not often recognized,” Council for Exceptional Children spokesperson Linda Van Kuren said. “We wanted to raise the awareness of these students.” Daniel was one of 29 students to receive the award out of 250 nominees from across the country. “It’s just incredible,” said Ilene Schwartz, an educational consultant who worked with the Starrs in charting Daniel’s academic course. “He was a child that no one thought he could graduate with any kind of academic skills and now he is going to have a full diploma.” Schwartz was responsible for nominating Daniel for the award. “Danny is setting the example for other kids and showing the example for what other kids can do,” she said. “I really just see him as a model… I just wanted to make sure he was recognized.” Daniel himself has a modest attitude towards the plaudit. “I wasn’t focused on winning the award,” he said, recalling how he felt when his parents told him he had won. “But I think I got a little excited.” THE AWARD is especially gratifying for Daniel’s parents. When he was a toddler, doctors told them that Daniel would never be able to lead a normal life. Daniel didn’t start talking until the fourth grade and struggled throughout elementary and middle school. Desperate to find an academic foothold for Daniel, his parents enrolled him at the Arlington Career Center when he started high school. “For our family, that was a huge, huge turning point,” Victoria Starr said. At the Career Center, Daniel got involved with media production and began to make his own Claymation movies using the figurines he had been constructing. Making the movies was painstaking work but, according to Career Center multimedia instructor Tom O’Day, “It came easy… In minutes he would put together these detailed little trains.” O’Day has been working with Daniel for six year. In that time, O’Day said, he has progressed from being uncooperative with those around him to being the subject of awe from his classmates. “In the beginning students would see that Dan was a little different,” O’Day said. “But as soon as they’d see his work the respect factor went up. It was immediate respect amongst his peers.” GETTING INVOLVED with filmmaking at the Career Center opened up a whole new world for Daniel. He began interacting with his classmates and started doing much better in school. In ninth grade, Daniel didn’t pass any of his Standards Of Learning tests, which are required to graduate. This year, he passed all but one. “It gave him something to look forward to every day,” Victoria Starr said. “The Career Center has been phenomenal.” Daniel is also working on an ambitious film project. He is planning on making over 100 short films about the British cartoon series Thomas the Tank Engine, which he adores. So far, he’s written the scripts for almost half of the films and has commissioned his classmates to lend their voices to his project. “He’d say ‘I need you to read these lines,’” O’Day recalled. “He’d get a big, intimidating kid and say ‘I need you over here.’ I couldn’t get them to do these things but Danny would be able to sweet talk them.” “Daniel has been able to focus his efforts,” Van Kuren said. “He has a gift and he uses it in many different areas.” “I film whatever I want to shoot,” Daniel said. “I have this urge to get it done.” DANIEL’S PARENTS say that communication and determination were two things that have been essential to ensuring their son’s education over the years. “You have to keep up communication with the school,” Daniel’s mother said. “We’ve been more lucky in that we are in regular contact with the school and the teachers. They’ve always been amiable to us.” The Starrs also have a 13-year-old, Daisy, who was diagnosed with Down Syndrome so they are all too aware of the effort that special needs children require. “Parents have to fight for opportunities for their kids,” Victoria Starr said. “And it doesn’t stop. It’s year after year.” She called Daniel an “18-year project.” “To raise this kid there’s a lot going on behind the scenes,” she said. But the Starrs aren’t alone. An entire community of children with autism and their parents are trying to navigate the same educational hazards that Daniel faced. According to a recent CDC report, autism now affects one in every 150 children and almost one in 94 boys. “He’s on the tip of this tidal wave that’s coming at the schools,” Daniel’s mother said. But Daniel is not letting his condition define him and is turning his disability into a strength, all thanks to determined and supportive set of parents, educators and friends. “Don’t ever give up,” Victoria Starr said about the lessons she’s learned from raising her children. “Everybody can be educated.” Getting help for a child with autism By Elizabeth Cohen CNN In recognition of World Autism Awareness Day April 2, CNN reports on the global impact, latest science and controversies related to the brain disorder. Watch for expanded coverage on CNN.com and CNN TV. ATLANTA, Georgia (CNN) -- When her son Justin was a newborn, Shannon Kinninger looked up from the kitchen where she was washing dishes, and saw a large, heavy toy fall on his head. Justin didn't cry. Shannon Kinninger feels her son Justin's autism diagnosis was delayed. Kinninger thought that was odd, and it wasn't the only thing that seemed strange about Justin. At her weekly playgroup, she watched the other babies hit their developmental milestones more or less on schedule. Justin lagged far behind. "When he was supposed to be sitting up, he wasn't sitting up. When he was supposed to be holding his head up, he wasn't holding his head up. When he was supposed to be rolling over, he wasn't rolling over," says Kinninger, a nurse who lives in Fayetteville, Georgia. Kinninger brought up her concerns to her pediatrician, but he told her not to worry. "The doctor kept saying that boys develop more slowly than girls," she says. "He kept reassuring me he'd be OK." Even though she felt frustrated, Kinninger accepted this explanation for years. Finally, when Justin was 4, she decided enough was enough. Justin wasn't potty trained, and he had unusual repetitive behaviors, such as switching lights on and off for extended periods of time, or washing his hands over and over. Plus, he wouldn't look at people -- he looked "through" them. She switched doctors, and the new pediatrician referred her to a developmental pediatrician. "He said, 'He's autistic. I knew five minutes after you came in,' " Kinninger says. "I thought, finally, we get a diagnosis." Now Kinninger thinks about all those lost years -- from babyhood to 4 years old -- critical years when Justin could have been receiving therapy for children with autism, but didn't. She now tells other parents of children with autism they need to be advocates for their children, from the very first moment they show signs of having autism. Video Empowered Patient: Steps to take to get help for a child with autism » Here, from mothers of children with autism, are ways parents should fight for their children with autism, from babyhood through the school years. 1. Trouble getting a diagnosis? Bring in video, letters. If you're concerned your child has autism, and you're getting the same response Kinninger got from her pediatrician, remember doctor's visits are often short, and your child may not be displaying the worrisome behavior you've seen so often at home. Alison Singer, executive vice president of Austism Speaks an awareness and advocacy organization, suggests videotaping your child's behavior and showing it to the doctor. "You could play it on your laptop, or even just bring in the video camera," she says. Getting a letter of support from your child's day-care provider or preschool teacher might also help. "Teachers are seen as other professionals, and a letter saying, 'In 20 years of teaching, this behavior is really unusual,' can go far," says Singer, who has a 10-year-old daughter with autism. If your child isn't in day care or school, even a letter from a neighbor who knows your child could help, she says. Singer emphasizes that parents shouldn't push their pediatrician for a diagnosis. "We're saying, refer the child to a developmental pediatrician for additional screening and testing. Because when a parent thinks something is wrong with their child, they're usually right," she says. Educating yourself about autism will also help you have a discussion with your pediatrician. Autism Speaks, First Signs, and the American Academy of Pediatrics all give excellent overviews. Autism Speaks' Video Glossary has more than 100 video clips comparing the behavior of children with autism spectrum disorders with the behavior of a typical child. 2. Sign up for early intervention Any child younger than age 3 with a developmental delay is eligible to receive services through Early Intervention, a government-mandated program that provides services to eligible children. Services are free of charge, and vary from state to state, but may include speech and language instruction and occupational and physical therapy. To learn how to apply for Early Intervention, click on this state-by-state directory from the National Dissemination Center for Children with Disabilities and scroll down. Early Intervention is invaluable because it links parents to services in the community, but Lisa Goring, mother of a child with autism and director of family services at Autism Speaks, warns that parents may also have to search on their own, since it can be hard to find services without a long waiting list. "There just aren't enough service providers for the kids who need them," Goring says. To find services on your own, wrightslaw.com, which offers information about special education law and advocacy, has a Yellow Pages for Kids that lists providers. Long waits are so prevalent that Nancy Wiseman, founder and president of the advocacy group First Signs, whose 12-year-old daughter has autism, has a few suggestions for how to get in quicker. First, parents should stress the age of their child (many clinics will give priority to children under 3), and should ask the pediatrician to make a call to the specialist. More suggestions are in her book "Could it be Autism? A Parent's Guide to the First Signs and Next Steps." 3. Know your child's rights in school When your child enters public school, he or she has rights under federal and state laws. The U.S. Department of Education has information about federal laws and state laws. The National Association of Parents with Children in Special Education has information about children's legal rights as well. Wiseman says that even with these protections, you'll still have to work to get what's best for your child. For example, Wiseman moved to get into a different school district, and then a few years later, when that district no longer worked well for her daughter, she twice fought to place her child out of the district. "It's very frustrating to battle a school, and you really have to do your homework," she says. You and the district will come up with an Individual Education Plan. Wiseman recommends "The Complete IEP Guide: How to Advocate for Your Special Ed Child" by attorney Lawrence Siegel. Also, school districts often have a Special Education Parent Teacher Association. Parents there can often give good advice on how to work with the school district. 4. Sign up for a research study If you live near a major research university, Wiseman suggests finding out whether anyone is looking for children with autism for research studies. Sometimes, these universities will provide care for your child as part of the study. Wiseman's group, First Signs, has a list, as does Autism Speaks. 5. Get support from other parents Judith Steuber, who raised two grandsons with autism, said that if she had to do it all over again, she would do one thing very differently. "From the beginning, I wish I'd had more support from other parents," says Steuber, who now acts as a mentor for special-needs parents in her school district. "I think that makes a big difference." advertisement Autism Speaks has a state-by-state list of support groups. You can find a chapter of The Autism Society of America here. There are electronic support groups on Yahoo, the Berkeley Parents Network, and Autism Web. The Arc has support groups for people with intellectual and developmental disabilities; Wiseman says many have a large number of parents of children with autism. Elizabeth Cohen is a correspondent with CNN Medical News. Senior producer Jennifer Pifer and intern Jennifer Kabak contributed to this report. Give us answers on vaccines By DAVID KIRBY Atlantic Journal Constitution Thursday, March 20, 2008 By now, many parents in America have heard of the Hannah Poling court case. They know the government has acknowledged that vaccines contributed to autism in at least one little girl from Georgia. Understandably, they are worried, and they want answers. But instead of frank talk from leading health officials, their concerns are being met with stonewalling, denial and misinformation. By refusing to address what really happened to Hannah — by commanding parents to settle down and adhere to the nation's rigid immunization regime — officials will only drive people away from vaccines in anxiety-ridden droves. But what if we could test children for underlying conditions that might increase their risk of vaccine injury and autism? And what if we allowed those at risk to slightly delay and spread out their shots? It's a difficult, but not impossible, proposition. And I believe doing so would reduce the rate of autism, seizure disorders and even asthma in some children. And we would boost vaccination rates by restoring faith in the nation's teetering immunization program. Why do I say this? New documents have surfaced in the Poling case that shine more light on how Hannah's vaccine injury led to autism. A government document filed in the case last November conceded that Hannah's vaccines had aggravated an underlying disorder of the mitochondria. Mitochondria are the tiny powerhouses within each cell that convert food and oxygen into energy. Government officials acknowledged that Hannah's disorder led to a condition known as low cellular energy metabolism, which was aggravated by vaccines and ultimately led to an autism diagnosis. It was a tantalizing admission but did little to explain just how the vaccines had aggravated the disorder or caused autism. But on Feb. 21, the U.S. government made a second, unpublicized concession in the case. In addition to triggering autism, officials now admitted, Hannah's vaccines had also led to her "seizure disorder," or epilepsy. And there was more. The November document claimed that Hannah had a mitochondrial "disorder." But by February, this was modulated to a mere mitochondrial "dysfunction. " That's because Hannah's underlying condition was asymptomatic and most likely environmentally acquired. It was not some rare, grave, inherited disease that would have progressed to autism anyway, as many officials contend. The November report said Hannah's vaccine reaction had "manifested" as early-onset brain disease, with "features of autism spectrum disorder." But the February report is more blunt. It says that Hannah's vaccines "caused" her "autistic" brain disease. But the real bombshell was this: Hannah's autism was caused by vaccine- induced fever and overstimulation of her immune system, according to court documents. Her low cellular energy and reduced metabolic reserves, due to mitochondrial dysfunction, were overstressed by the contents of nine vaccines (including mercury) at once. The Cleveland Clinic defines low cellular energy metabolism disorder this way: "The process of converting food and oxygen (fuel) into energy requires hundreds of chemical reactions, and each chemical reaction must run almost perfectly in order to have a continuous supply of energy. When one or more components of these chemical reactions does not run perfectly, there is an energy crisis, and the cells cannot function normally. As a result, the incompletely burned food might accumulate as poison inside the body." The cause of Hannah's mitochondrial dysfunction is up for debate, though ample evidence exists to implicate heavy metals in air, water, food and vaccines as possible suspects. But the government has acknowledged that low cellular energy can increase the risk of immune system overdrive, and regression into autism. Now, one would think that investigating — and preventing — such vaccine- induced overstimulation in susceptible children would be a top priority of health officials. But it is not. Dr. Julie Gerberding, director of the Centers for Disease Control and Prevention, has vowed to "adamantly" enforce the one-size-fits- all vaccine schedule, no matter what happened to Hannah and other kids like her. Frantic parents, desperate for answers, were admonished by Gerberding to "set aside this very isolated, unusual situation" in so-called Vaccine Court, even though "the court apparently made the decision that it is fair to say that vaccinations may have been one of the precipitators. " Gerberding was either grossly misinformed, or lying. To begin with, this "decision" was not made by the court at all, but by medical personnel working for the Secretary of Health and Human Services, Gerberding's boss. More important, the Poling case is neither isolated nor unusual. At least 12 other autism-related claims have been paid out in Vaccine Court to date, and perhaps hundreds more cases like Hannah's are pending. Most striking is how typical Hannah's cellular dysfunction may be among children with autism. While extremely rare in the general population, at two per 10,000 people, it seems unusually common in autism — with estimates up to 2,000 per 10,000. Many opinion leaders are calling on the government to release all relevant documents leading to the Poling concessions. The family has waived all claims to privacy, and the public has a right to know. For now, all we have is the CDC Web site, which says that "simultaneous vaccination with multiple vaccines has no adverse effect on the normal childhood immune system." But did Hannah have a "normal" immune system? Are other kids out there also metabolically primed for overstimulation from too many shots at once? Should their vaccines be spread out? Instead of answers, we get adamant silence. This is not a matter of national security. It's a national emergency. Millions of parents are anxiously waiting for their government to tell them what the hell is going on. • David Kirby, an investigative journalist, is author of "Evidence of Harm – Mercury in Vaccines and the Autism Epidemic: A Medical Controversy" Montgomery Parents Help Give Kids a Solid Foundation Nonprofit Group Funds Exercise Therapy for Children By Erin Donaghue Gazette Staff Writer Thursday, March 6, 2008; Page GZ05 Christopher Henry, 15, wasn't able to ride a bike before he started sessions at Fitness for Health, a therapeutic exercise facility for young people in Rockville. Christopher, who was born prematurely, struggles with autism, attention- deficit hyperactivity disorder and a lung ailment. But through a series of targeted games and exercises, the Fort Washington resident has been able to gradually increase his balance and motor skills. "Within a month, Christopher was riding his bike independently," said Marcelle Henry, Christopher's mother. Henry said she has also noticed marked improvement in her son's social skills and self-esteem since he began sessions in June at Fitness for Health, which serves children of all ability levels. "I have seen so much growth in Christopher and so much self-esteem has built up inside him," Henry said. "Now he's very outgoing and he speaks to everyone, which he wasn't doing before," she said. The program, which usually costs about $97 per session, would not have been financially possible for Christopher without a scholarship from the Kids Feeling Fit Foundation. The nonprofit organization was started in 2001 by Potomac resident Richard Saltzman, a sales executive for a candy company, and other Montgomery County parents. The nonprofit group offers scholarships to young people such as Christopher who face physical challenges, and aims to improve their confidence and physical ability. "We saw a need for this in the community," Saltzman said. The foundation, which is run by Potomac and Bethesda area volunteers, finances the scholarships through grass-roots fundraising and several grants from the Life Enrichment Awards Program, which is run through the HSC Foundation in the District, a group that aims to improve access to services for people with social or health challenges. Saltzman estimates that his group has offered nine scholarships in the past two years, some of which are used for six months of classes at Fitness for Health and others to pay for fitness equipment, exercise classes, nutritionists or other needs. The award recipients are chosen based on financial and physical needs, he said. Robin Feldman, a board member of the Kids Feeling Fit Foundation, said the Fitness for Health facility helped her son Larry, 11, improve his motor skills. She became involved with the foundation, she said, because she wanted to make sure others have the same opportunity he did. "I had medical insurance to be able to provide this for my son, but I knew there were a lot of people that had no insurance whatsoever," Feldman said. Marc Sickel, the facility's founder, said the idea is for kids to have so much fun they forget they are working. Sickel's facility includes a 30-foot trampoline, a ropes course, an indoor batting machine and several climbing walls, including two that glow in the dark. "Kids all know what's hard for them, and they tend to avoid those things," Sickel said. "You want to put them in an environment where success builds success." What You Should Know about Evaluations by Robert K. Crabtree, Esq. from www.wrightslaw.com Know Your Rights Your school system, under IDEA and its state counterparts, is required to fully evaluate any child who may need special education services "in all areas related to the suspected disability, including, if appropriate, health, vision, hearing, social and emotional status, general intelligence, academic performance, communicative status, and motor abilities." (34 CFR Sec. 300.532) Before the school does so, and before providing or changing special education services, it must notify you in writing. For the first evaluation and placement, schools must also obtain parental consent. Parental Consent IDEA's requirements for parental consent vary depending on whether the LEA is seeking an initial evaluation or a reevaluation and on whether the parents affirmatively respond to a request for consent or simply do not respond or cannot be located. 20 USC Ch 33 Sec 1414 (c)(3) provides that an LEA must "obtain informed parental consent . . . prior to conducting any re-evaluation of a child with a disability, except that such informed parent consent need not be obtained if the local educational agency can demonstrate that it had taken reasonable measures to obtain such consent and the child's parent has failed to respond." Thus, while an LEA may proceed to re-evaluate without parental consent, that is true only if it has first taken reasonable, documentable measures to obtain consent. Per 34 C.F.R. sec. 300.345(d) this means the LEA must be able to show documents such as records of attempts to call the parents, correspondence to and from the parents, and/or records of visits to the parents' home or place(s) of employment. If parents do respond, but affirmatively refuse to consent to the LEA's re-evaluation, the LEA would have to seek an order to override the parents' refusal to consent. 34 C.F.R. sec. 300.505(b). For an initial evaluation, it appears that even with documentable reasonable efforts to obtain consent, if the parents do not respond, the LEA cannot go ahead with the evaluation without further steps. In that case, if the reason consent could not be obtained is that the parents cannot be identified or located, presumably the LEA could seek the appointment of an educational surrogate (see 20 U.S.C. sec. 1415(b)(2)), or seek an order from the due process agency (presumably, this would be a "matter relating to the identification, evaluation, or educational placement of the child" and thus within the agency's jurisdiction.) If parents respond but refuse to consent to the initial evaluation, the LEA can seek an order from the due process agency to permit the evaluation. 34 C.F.R. sec. 300.505(b). Your Never-ending Role As a parent, you must make sure that all areas of possible need are assessed as quickly as possible. While some parents would rather not allow their school system to evaluate their child, a refusal to cooperate at this stage of the process can backfire if you need to ask for more or for different services later. It may also affect your ability to have the school system pay for an independent evaluation. Due Process After the evaluations, your child's team (includes parents, teacher, service providers, school and independent evaluator, chairperson, child -- if 14 or older -- and anyone else a parent wants to invite, such as outside evaluators or advocates) must meet to decide what, if any, special education services should be provided, and to write an Individual Education Plan (IEP). Your school is supposed to give you copies of its written assessments before that meeting. Ask for explanations of anything you don't understand in those reports before the team convenes. If you have concerns about the evaluation results or the team's program recommendations, you can request independent evaluations at the school system's expense. You'll need to select a "qualified" professional, and -- although it is a good idea to let the system know you are obtaining such an evaluation -- you are not required to notify the school in advance. In some states like Massachusetts, the law allows parents to obtain an independent evaluation even in an area the school system has not assessed, as long as it relates to an area of suspected need. There is a good argument that this is so under IDEA as well. (See 34 CFR s.503(e) and 34 CFR §330.532(f)) Selecting an Independent Evaluator Selecting an independent evaluator is one of your most important decisions. Parents rarely succeed at due process hearings without the testimony of expert witnesses who are competent, experienced, and credible. Here are a few rules of thumb to help you make that decision. * If the school system disputes your right to have an independent evaluation at their expense, don't wait until that dispute is resolved before you schedule your evaluation. In the long run, the question of who pays for the evaluation is much less important than getting the evaluation done. * Some school systems will give you a list of "approved independent evaluators." Your choice is not restricted to that list. Just be sure to choose an evaluator with the right license or other credentials. * Ask organizations involved with your child's type of disability, your pediatrician, other parents, advocates, parent organizations, and special education lawyers to find out which experts are well respected in the particular area of disability. It is important to find evaluators who can demonstrate objectivity and expertise in your child's disability. Evaluators with a reputation for being "hired guns" or for always recommending the same program will not be as effective in supporting their recommendations either at a team meeting or in a hearing. * Find out about an evaluator's willingness and availability to follow through on her recommendations. Will the expert observe your child's program? Attend a team meeting? Observe and evaluate alternative placements or services? Testify at a hearing (and cooperate with preparation for that hearing)? Often, the experts who work outside of hospital facilities are more available and willing to do these things. * If you are referred to a hospital facility, check out the particular group of evaluators within that facility. There can be great differences in approach, quality, and follow-through from one division to another. * An evaluator should be able not only to write a convincing report, but to "sell" the recommendations in that report. A good evaluator has "people" skills and can speak with school personnel without antagonizing them -- while sticking to her recommendations. * The best evaluators are in great demand. Be prepared to wait -- for an appointment for testing, for a written report, and for anything else you may need. Working with Your Evaluator Once you have an excellent evaluator (or team of evaluators), stick with them. The more an expert sees of your child, the more convincing her recommendations will be. (Remember that the school system's experts -- the classroom teachers and other service providers -- see your child every day, while the independent evaluator normally only sees her for the time it takes to test her.) Don't ask an independent evaluator for legal advice. Unless she has studied the decisions issued by courts and hearing officers and the rules and regulations that govern special education process, she can't advise you reliably on your options and strategies. Be skeptical -- even of an independent evaluator's findings and recommendations. You know your child best. Remember that an evaluator sees her for brief, though intense, periods of time and can only get a snapshot. Also remember that the evaluator's advice is only as good as the information available to her. For example, if she suggests that a particular program would be a good fit for your child, find out how well the evaluator really knows the program: Has she seen it recently? Does she know what the program's population and/or staffing and/or approach is like? Remember that special education law requires a school system to provide a "free appropriate public education" which must be provided, to the maximum extent appropriate, in the "least restrictive environment" (LRE). Some independent evaluators are quick to assume that no school system can provide the kind of program she is recommending. Despite the evaluator's opinion, in most cases you will have to seriously evaluate the services available within the school system before having a chance to win an outside placement at a hearing. Accordingly, you should work with the evaluator to assess how much can happen right in your child's school system. Old-Fashioned Play Builds Serious Skills February 21, 2008 by Alix Spiegel www.npr.org Better Ways to Play Self-regulation is a critical skill for kids. Unfortunately, most kids today spend a lot of time doing three things: watching television, playing video games and taking lessons. None of these activities promote self-regulation. We asked for alternatives from three researchers: Deborah Leong, professor of psychology at Metropolitan State College of Denver, Elena Bodrova, senior researcher with Mid-Continent Research for Education and Learning, and Laura Berk, professor of psychology at Illinois State University. Here are their suggestions: Simon Says: Simon Says is a game that requires children to inhibit themselves. You have to think and not do something, which helps to build self-regulation. Complex Imaginative Play: This is play where your child plans scenarios and enacts those scenarios for a fair amount of time, a half-hour at a minimum, though longer is better. Sustained play that last for hours is best. Realistic props are good for very young children, but otherwise encourage kids to use symbolic props that they create and make through their imaginations. For example, a stick becomes a sword. Activities That Require Planning: Games with directions, patterns for construction, recipes for cooking, for instance. Joint Storybook Reading: "Reading storybooks with preschoolers promotes self-regulation, not just because it fosters language development, but because children's stories are filled with characters who model effective self- regulatory strategies," says researcher Laura Berk. She cites the classic example of Watty Piper's The Little Engine That Could, in which a little blue engine pulling a train of toys and food over a mountain breaks down and must find a way to |