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April 2011 |
PerspectivesHome Away from Home: Reflections from the OAR “Family”
“OAR feels like another home away from home. As both a provider and a parent of a child with autism, I can rely on OAR for good, balanced information for making informed choices about treatments and approaches, and for supporting the search for new ideas and approaches,” says Joshua Feder, MD. “OAR is also military friendly, and as an ex-Navy doctor and dad, it is great to have OAR in the corner for all of our families of service members.” Dr. Feder got involved with OAR several years ago after Peter Gerhardt, Ed. D., then OAR’s president, and Mike Maloney, OAR’s executive director, asked him to review research proposals, having read his posts on Valerie’s List, a parent-run informational website for people living with or supporting people with autism. He continues to review proposals while taking on other projects for OAR, including helping with the Life Journey through Autism: A Guide for Military Families on developmental approaches to autism intervention. Today, in his job as director of research in the Graduate School of the Interdisciplinary Council on Developmental and Learning Disorders in San Diego, Calif., he also has his doctoral students look to OAR to apply for research grants. Last but certainly not least, he adds with a smile, “I always sponsor Mike Maloney when he runs the Marine Corps Marathon 10K to raise funds for OAR!” In addition to his work as director of research, Dr. Feder is also a clinical assistant professor at the University of California San Diego School of Medicine, teaching classes through ICDL and at UCSD in early intervention, biostatistics, research design, and psychopharmacology, neurobehavioral medicine, and application of DIR/Floortime with families and in schools and a child and family psychiatrist. OAR plays a critical role in supporting the development of new ideas, Dr. Feder believes. “It is a little bit like micro-enterprise, making accessible small grants for new and smaller researchers nationwide to get started and continue smaller projects without the enormous burdens of regulation required in larger government grants. The larger grants require so much administrative time and cost for that administrative work that there is little point in applying unless one is representing a large institution. Moreover, bigger grantors are less likely to risk giving grants to unknown researchers with new ideas. OAR grants are easy to understand and apply for, and require little administrative work by comparison, allowing for small innovative projects.” SaluteDodging Balls to Raise Money for OAR
When Amanda Vance talks about boots in the sand, she isn’t talking about a walk on the beach. A 21-year-old Army Specialist originally from Goodyear, Ariz., Vance is part of an active duty unit from Fort Bragg, North Carolina, deployed at a base in Baghdad, Iraq. “Boots in the Sand is an initiative my unit came up with after realizing there was very little coverage about soldiers in Iraq. We started taking the stories that were written and sending them back to soldiers’ hometowns where we could set up interviews with local newspapers.” When she started dating her fiancé last year, Vance met his son who is on the autism spectrum. “I started doing research to better understand what autism is and to help me communicate with him better and to understand his needs.” She soon found OAR’s Web site for military families, Operation Autism. “Military families have a unique set of needs. I feel like Operation Autism really answers those needs and helps to provide support to these families. It's the only Web site or organization that I've come across that really offers that support.” In appreciation for military families who are raising children with autism spectrum disorders and to educate soldiers on the base about autism, Vance decided to create a “Day of Awareness” as part of Boots in the Sand’s efforts. “After my unit got together and discussed what would likely be most popular among the troops and more fun, we decided to have a dodgeball tournament to raise money for OAR. We have plenty of basketball tournaments that go on here but we wanted to do something that set us apart from those.”
The tournament and Day of Awareness are scheduled for April 30. “I am working with another soldier in my unit to make sure this day is a success. I am also asking the other soldiers to participate when they can. We are expecting a turnout of 30 to 50 soldiers and civilians but I am hoping for more.” Choosing OAR as beneficiary was easy, Vance says, because of its Operation Autism Web site. “I love that OAR created a Web site specifically for military families that have children with autism.” She plans to take a low-key fundraising approach, asking them to donate to OAR directly and passing out cards with OAR’s Web site address on it. It’s hard to imagine a greater act of generosity than a group of soldiers doing hardship duty in Iraq, at great cost to their lives, banding together to create a day of awareness for families with children with autism and raising money for them. In appreciation for Amanda Vance’s efforts and those of her fellow soldiers, OAR salutes and says thank you! OAR NewsOAR Executive Director Embarks on First “Listening Tour” Prospective political candidates hit the road for “listening tours” in the preliminary stages of any election cycle, typically in places that happen to be the site of upcoming primaries. Ostensibly, they are speaking to constituents and testing the waters as to a serious campaign run. At the beginning of April, OAR Executive Director Mike Maloney embarked on a listening tour in Southern California that was truly about listening. He wanted to meet and listen to military parents of children with autism, staff personnel at Exceptional Family Member Program offices, and Navy medical staff who serve these families and their children with autism, and he did. “I was impressed by the level of interest in autism and the attention it receives everywhere I visited,” Maloney reports. “The challenges that accompany raising a child with autism for military families are there for sure, but the leaders, doctors, nurses, EFMP staff, and others in the support network I met are just as certainly committed to serving these families well.” In visits to two EFMP offices at Camp Pendleton and Marine Corps Air Station Miramar and Naval hospitals at Camp Pendleton and Balboa (San Diego), Maloney asked four basic questions, then listened and took notes. Question #1: “How familiar are you with OAR and the resources OAR has produced for military families impacted by autism: the Operation Autism Web site and Life Journey through Autism: A Guide for Military Families?” Not surprisingly, OAR was largely unknown, but many of the people Maloney talked with did know about the resources. In a few instances, Maloney introduced them to the materials. Question #2: “How useful are the resources and what are the best ways to put them in the hands of parents? The EFMP staff and medical personnel familiar with the resources were unanimous in their praise. The general response was, “It’s the best single source of information there is. We recommend (and in many cases provide) it to parents at the time of diagnosis.” The consensus on how to deliver the resources was a combined approach:
Question #3: “What are the most significant challenges faced by military families with children with autism?” As expected, this is where it became more complicated. Some EFMP staff mentioned the escalation in challenging behaviors for some children with autism coincident with one or both parents’ multiple deployments. The immediate question was where and to whom to turn for help. Maloney raised the possibility of OAR research and the development of resources that might be used to better prepare both the child with autism and the family for the effects of multiple deployments. As he told the people he met with, he plans to discuss the topic with Scientific Council Chairman, Dr. Peter Gerhardt. Navigating the system was perhaps the most frequently voiced concern. In one context, the discussion centered on the difficulty in transitioning through the phases 0-3, early intervention, then school. In the medical area, it included referral and screening, testing, which tests were used, access to ECHO and the Autism Demonstration Project, and what information is available for parents on local services and supports at the time of diagnosis. Another challenge described by medical officers was access to complete medical information. With many families often receiving treatment services from civilian providers, how does the primary care provider follow the patient’s full treatment regimen? Question #4: “Where, what, and how might OAR lend further support both to the families and to those who support them in any capacity? There was across the board consensus that OAR’s Guide for Military Families is a great resource, which ideally parents would receive at the time of diagnosis. Both among EFMP staff and Navy medical personnel, there was high interest in autism specific training, workshops, seminars, and possibly something along the lines of grand rounds, all ideas that Maloney sees as within OAR’s capacity to provide. Finally, there was a discussion about the potential of some of the emerging telemedicine technologies to address some of the medical records issues, enhance the capacity to serve families in more remote locations, and offer families in general greater continuity of care. “I came back with a much greater appreciation of the challenges for support agencies like EFMP offices, and within the overarching systems,” says Maloney. “And seeing all the military families at a fun fair following the Act Today for Military Families 5K/10K race in San Diego on April 2, was a vivid reminder of their spirit and the challenges at the family level. Clearly our efforts at OAR are well placed, and we will continue to do more.” OAR’s resources for military families, Operation Autism and A Guide for Military Families are accessible online. OAR also provides the published guide to military families and supporting agencies at no cost. To inquire, learn more, or offer suggestions about OAR’s initiatives in support of military families, please contact either Maloney or Allison Gilmour, director of programs and community outreach, at OAR.
Five Reasons You Should Go to The Colonial Beach Blues Festival
Third, and this is the big one, proceeds from the event will come straight to OAR to fund autism research. This is a first-time event not only for OAR but also for organizers and husband-and-wife team, Dom and Charlene Salemi. It helps, says Charlene, that Dom has organized and produced rock shows for clubs in Washington, D.C. and Baltimore. Dom is a lawyer for the United States Trademark Office and Charlene is a contract specialist for Imagine One Technology and Management Limited. The couple hopes this will be an annual event (reason #4 to go – so there will be another one). Why put in so much work as volunteers? In the Salemis’ case, it has a lot to do with their son, Nicholas, who is 15 and was diagnosed with an autism spectrum disorder at 4. And, Charlene adds with a laugh, to “alert the rest of the world as to how hip Colonial Beach can be!” (Reason #5) The Salemis chose OAR as the beneficiary because Charlene’s research told her that OAR was “particularly effective at raising funds and seeing they were placed in the hands of outstanding doctors and researchers.” Get festival details on the Web. You can also find information on Facebook at Colonial Beach Blues Festival, or contact the Salemis at cbbluessociety@gmail.com. Applied Research Competition Review Begins On April 1, the first phase of OAR’s 2011 Applied Autism Research Competition came to a close with the receipt of 69 research pre-proposals from researchers across the United States as well as from Australia, Canada, Italy, and Portugal. This year, OAR introduced a new, online-only application form, which has made the entire process more convenient and streamlined for both applicants and reviewers. After an internal review to ensure that each of the applications meets the criteria put forth in the Request for Proposals, OAR sends the pre-proposals out for review to members of OAR’s Scientific Council and a corps of external peer reviewers. As part of the initial review process, three doctoral-level reviewers, including at least one member of the Scientific Council, reviews each pre-proposal. Once those are completed, OAR records the scores and reviewer comments to support the screening process and later to share as constructive feedback for the principal investigator. In June, OAR will invite the authors of the most highly rated pre-proposals to submit full proposals for additional review later this year. In this second round, as in the first, three reviewers review the full proposals, but in this round, two of the reviewers are from the Scientific Council. OAR’s Scientific Council will exclusively conduct the third and final round of reviews on October 13 at their annual meeting. On the following day, OAR’s Board of Directors will meet to approve the final grant awards. Funding will commence on or after January 1, 2012.
“Tapas For a Cause” Raises Money For OAR LaTasca’s “Tapas for a Cause” raised $578 for OAR, raising awareness of autism in the process. Each month, La Tasca selects a charity that will receive a percentage of the profits earned on the first Tuesday. For April, Autism Awareness Month, OAR received the honor. On April 5, tables at this Spanish style restaurant were decorated with OAR information and materials. While enjoying small plates of delicious Spanish dishes and drinking sangria and other beverages, diners could also learn about autism and OAR’s work. OAR looks forward to participating again next year and thanks La Tasca for its generosity. Write for OAR In 2011, OAR is hoping to expand its list of authors and contributors to The OARacle by building a bank of people who would like to submit articles for publication. OAR invites people with autism, parents or siblings of people with autism, clinicians, and educators to submit first person or “how to” articles (750 words or less) related to autism, research, or research to practice. If interested, contact Alyssa Kruszyna at 703-243-9717 or akruszyna@researchautism.org. News from the Autism CommunityOAR-funded Researchers Appear in IACC’s 2010 Summary of Advances in ASD Research The IACC recently released its list of the top 20 scientific advances in autism spectrum disorder (ASD) research for 2010. The selected articles include new ways to understand ASD using cellular models and high-tech imaging techniques, studies uncovering new genetic risk factors and novel ways to diagnose ASD using speech patterns, and the first intervention proven to be effective for toddlers. The selections also include an evaluation of currently used interventions and treatment models and an assessment of whether early intervention programs can meet the increasing demand for services. The scientific discoveries described in the Summary of Advances represent significant steps forward in understanding ASD and improving quality of life for individuals and families affected by the disorder. OAR-funded Contributors Sam Odom, Ph.D., a member of the Scientific Council, was part of two research teams whose studies were selected. Another OAR-funded researcher, Kara Hume, Ph.D., who had both a graduate study and a research study funded by OAR, was part of the research team for the study on evidence of comprehensive treatment models for individuals with autism spectrum disorders, published in the Journal of Autism & Developmental Disorders, April 2010. The second Odom study, Evidence-based Practices in Interventions for Children and Youth with Autism Spectrum Disorders, was published by Preventing School Failure in May 2010. Dr. Odom’s, Dr. Hume’s, and Dr. Kasari’s studies all fell under the IACC question: “Intervention – Which Treatments and Interventions Will Help?” Almost all of the studies funded by OAR tie in to this category. However, some OAR-funded research does fall under other questions addressed in the published studies. In the first question, “Diagnosis – When Should I Be Concerned?” the IACC cited a national study on implementing developmental screening and referrals (published in Pediatrics,February 2010). In 2004, OAR funded a study by Karen Pierce, Ph.D. and Eric Courchesne, Ph.D. on the need for early identification of autism, developing a protocol for identifying infants at-risk for autism at the 1-year well-baby check-up based on a combination of behavioral and brain growth indices. OAR-funded researcher Paul Shattuck’s, Ph.D., study on how using services might determine the success of young people on the autism spectrum to transition to independence, which was funded in 2008, fits into the last question addressed by the IACC, “Infrastructure – What Other Infrastructure and Surveillance Needs Must Be Met?” Dr. Shattuck’s study used longitudinal data on 922 youth with autism from the National Longitudinal Transition Study 2, a nationally representative sample that generalizes to all special education students in the autism exceptionality category who were in 7th through 12th grade and ages 13 through 16 on December 1, 2000. The study sought to identify underserved populations, barriers to service access, and factors that enable improved access to help target policy reforms and the design of new transition services. How-ToBy Julie LaBerge, M.S. Ed.10 Steps to Starting a Peer Support Program in Your School
The Bonduel School District, a rural public school with just under 900 students in Northeast Wisconsin, was chosen to serve as a model rural school site for the National Professional Development Center on Autism Spectrum Disorders project during the 2008-09 (middle school) and 2009-10 (high school and elementary) school years.
With guidance from experts from the Waisman Center at the University of Wisconsin-Madison, staff at the Bonduel Middle School determined that there was a need to increase social opportunities for students with autism spectrum disorders (ASD) during the 2008-09 school year. When considering the options of evidence-based practices available at that time, it was determined that peer-mediated instruction and intervention (PMII) would be the most appropriate intervention to consider implementing. At the middle school in the first year, four students with autism spectrum disorders (ASD) and 18 typically developing peers participated. In 2009-10, the district added one group at the middle school, two at the elementary school, and one at the high school. A total of seven students with ASD and one student with another disability who has social needs participated and 46 typically developing peers. This year, there are a total of eight students with ASD and 40 typically developing peers trained as peer supports. As we implemented a peer support program, we discovered some practical steps that helped us as we developed the program:
New students have been identified as needing supports since our first year. Since we have expanded the program district-wide we have needed to recruit at the elementary and high school levels. The middle school groups have remained pretty constant. Adolescence is an especially challenging time in life, and this program appears to have provided much-needed social support for several students over the past couple of years. Over 50 students have participated in peer support groups throughout the district. One high school group operates independently of adult facilitators. Several non-disabled students get together weekly to support a student with autism and have developed relationships that are likely to continue beyond high school. This program has been the most rewarding experience that I have been involved with thus far in my career. Students with autism who once struggled to connect with non-disabled peers now express that they have friends and enjoy coming school. Their social skills are improving which will benefit them throughout life. It doesn’t get much better than that! Applying ResearchUsing Scripts to Ask for Help at Work Difficulties with employment for individuals with autism do not end with finding employment, maintaining employment is also a challenge. Employers report unhappiness with employees who do not know what to do when something goes wrong. A recent study, Teaching Adolescents with Autism to Describe a Problem and Request Assistance During Simulated Vocational Tasks, focused on techniques for teaching four secondary students with autism how to ask for specific help when something went wrong on the job. Already familiar with the job tasks, participants were taught scripts for stating what was wrong and questions to get help to correct the problem. After learning the scripts, the teacher randomly set up situations during work where the student would be missing material, have broken material, or have incorrect material. For example, when completing the task of emptying the garbage, the bags would be missing. The student had to approach the teacher and say, “The bag is missing. Do you know where I can get more bags?” which he had been taught using a script. Each participant learned the scripts and used them independently while working on work tasks in the classroom and an office location. While further research is needed to assure this technique can generalize to community work settings, scripts may be helpful in increasing communication and getting help to solve a problem, skills necessary for maintaining employment. Reference Dotto-Fojust, K. M., Reeve, K. F., Townsend, D.B., and Progar, P.R. (2011). Teaching adolescents with autism to describe a problem and request assistance during simulated vocational tasks. Research in Autism Spectrum Disorders. 5 (2), 826-833. Research 2011A Closer Look at 2010 OAR-Funded Research Study: Expanding the Reach of Toddler Treatment in Autism Spectrum Disorder Amount of OAR Funding: $30,000.00 Researcher: Laurie A. Vismara, PhD, BCBA-D Purpose: The purpose of the proposed study is to demonstrate the efficacy of a telemedicine-delivered parent coaching program for providing innovative, individualized interventions to families of children with autism spectrum disorders (ASD). The project's overall goal is to develop and test the use of telemedicine technology to deliver a manualized, parent-implemented intervention for families of children with ASD, ages 15-48 months. The intervention will use an Internet-based video conferencing program to teach families how to integrate the parent curriculum of the Early Start Denver Model into natural, developmentally and age-appropriate play activities and caretaking routines in their homes. At the end of the study, Dr. Vismara plans to have created written materials involving interactive treatment manuals, fidelity measures, and procedural implementation materials for providing remote intervention and support to parent-child interactions as they occur in daily routines as well as a proposal for a larger scale, controlled study. Why Is This Study Needed? Study Methodology In Brief ESDM is a developmentally based, relationship-focused, and behaviorally informed intervention developed to be delivered by parents within typical parent-child play and caretaking activities. During the study, parents can access the program from any computer or laptop, enabling families to practice the ESDM interactive procedures anywhere in their homes (e.g., play room, bedroom, kitchen, backyard) and to solicit coaching and feedback on unlimited types of child behaviors (e.g., communication, self-help, play, problem behaviors). Weekly online sessions will involve seven segments that include:
Researchers Laurie Vismara, PhD, BCBA-D, is a board-certified behavior analyst and an assistant research scientist in the Department of Psychiatry and Behavioral Sciences at the University of California Davis Medical Center in Sacramento, Calif. She specializes in conducting treatment research with young children with autism and their families. She is collaborating with Sally Rogers, PhD, in examining treatment efficacy and effectiveness in autism using the ESDM, as well as developing a coaching curriculum and parent education model for immediate provision of intervention to at-risk infants and toddlers. In addition, she studies the effectiveness of distance coaching through the use of telemedicine technology, as well as various teaching modalities to best disseminate evidence-based intervention models to families and community-based service providers.News from the RUN FOR AUTISMHalfway Out of the Dawg Pound: We Need You OAR is getting fans out of the Dawg Pound and on to the Cleveland Browns Field, in custom Cleveland 5K singlets no less. Come join the members of OAR’s RUN FOR AUTISM-Cleveland 5K team as they finish their race on the 50-yard line! The RUN FOR AUTISM- Cleveland team participating in the Rite Aid Cleveland 5K is halfway toward its goal of having 300 participants. So, invite a friend and sign up for the May 14 event with the RUN FOR AUTISM- Cleveland team today by contacting Alexandra van Wees at run@researchautism.org. Another Reason to RUN FOR AUTISM in Cleveland OAR is excited to announce that the top 20 RUN FOR AUTISM fundraisers in the Cleveland Marathon, 10k, or 5k will receive complimentary conference registrations to Life-Long Strategies for Success: Milestones 9th Annual Autism/Asperger’s Conference. This conference on Tuesday, June 21, in Cleveland, Ohio, brings 700 members of the autism community to learn from 31 presentations by autism experts on a wide range of topics. For the first time, OAR will offer a track of speakers consisting of OAR-funded researchers and associates. Attending the Milestones Conference is a must for those in the autism community; don’t miss out on this opportunity to attend for free! The deadline for earning a free conference registration is May 23. If you run and get a free registration but can’t attend, your spouse or another family member may go in your place. OAR Has Entries to Fall’s Biggest Sold-Out Races The Bank of America Chicago Marathon on October 9 and the Marine Corps Marathon on October 30 sold out in record-setting time this year. That’s the bad news. The good news is that, as an official charity partner of both races, OAR still has entries available to anyone who wants to join one of the teams. The two marathon events are the largest of the RUN FOR AUTISM’s annual events, making them a lot of fun and inspiring as well. The Chicago Marathon is the pinnacle of achievement for elite athletes and everyday runners alike. Runners take to the streets of the Windy City and wind through beautiful, historic, lively neighborhoods. Runners who commit to raising $950 can register for the race though OAR. OAR is excited to partner with the Chicago Area Runners Association (CARA) again this year, which offers those who commit to run with the RUN FOR AUTISM team complimentary 18-week marathon training. The Marine Corps Marathon is one of the most inspiring marathon courses in the country. This race includes such highlights as the National Mall and the Jefferson, Lincoln, FDR, Korean War, and Vietnam Veterans memorials. The final stretch challenges runners with an incline that builds up to a patriotic finish in front of the Marine Corps War Memorial and a finishers’ chute lined with uniformed Marines. Runners who commit to raising $600 can register for the race though OAR. Those who registered through either of the races’ Web sites before the races sold out can also be on the team when they commit to raising $250. The RUN FOR AUTISM is looking forward to having a record-setting year in 2011, and these two races are predicted to be very successful. OAR Teams up With Training Program for DC Area Runners Marine Corps Marathoners--what's your training plan? OAR is teaming up with the Marathon Charity Cooperation (MCC) to get you ready for the fall race! Joining OAR for the MCM 10K? No problem! Train with the group to build mileage and camaraderie. Participants will have the chance to meet fellow OAR runners and some of the OAR staff. The MCC training program is available at no cost to all DC area RUN FOR AUTISM team members who commit to raising $600 or more for autism research. Marathon training kicks off at 8 a.m. on Saturday, May 7, so mark the date now. What do participants get when they join the MCC training program? Coaches. MCC President Nick Panebianco leads a team of five certified coaches who will rotate throughout the program. Three or four coaches will be present at the program's long runs on Saturdays. Location, location, location! The MCC program accommodates runners from the D.C. metro area and keeps your long runs fresh and interesting by rotating among D.C., Maryland, and Virginia. Check out the MCC Web site for the Saturday long run schedule. A peer who runs at your pace. Whether you're a speedster or a jogger, this training plan is for you! The pace of past MCC participants has ranged from a 7-minute mile to a 13-minute mile. Additional guidance. The MCC program provides a day-to-day training schedule, Saturday seminars, and post-run yoga sessions. For more information on joining the training program or the RUN FOR AUTISM team, contact the RUN staff at run@researchautism.org or call RUN Coordinator Chelsea Steed at 703-243-9710 x224. For more information on the MCC training runs, visit the MCC Web site.
RUN FOR AUTISM-NYC Team Smashes Previous OAR Records “I always said there's nothing more fun than running through the streets of NYC,” Stephanie Burdge shared after finishing the NYC Half Marathon in March, “but I am now convincedthere is nothing more fun than running for charity.” Burdge ran the course with 86 RUN FOR AUTISM teammates, a new OAR participant record at this event. Those 86 runners were part of a total 10,000 runners for the half marathon, which took them on a quick loop of Central Park, through Times Square, down the river-hugging West Side Highway, and into the Battery Park City finishers’ chute on March 20. Smile-Worthy For her RUN teammate Korin Levi, accomplishment came in simply finishing the race. She registered for the race to mark her 35th birthday and chronicled the start of her training by saying, “Forsomebody whohasn't worked out in her life and has never been in a sportteam, [running this race is] so excitingand a little bit scary at the same time. But even though I am in the beginning of my training,I am already convinced I can do it, and anybody who really wants can do it.” She multiplied her accomplishment by running for autism. “It's an amazing feeling to wear our OAR t-shirt, tell people our cause, and pass the finish line. It was one of the most awesome days of my life.” An Awesome Fundraising Effort Binder is one of OAR’s all-time top fundraisers, having brought in $17,000 in honor of his 10-year-old son Luke, who has Asperger Syndrome. He was so impassioned by his experience racing and raising money for OAR that he’ll be donning the OAR tri-top this August in the Nautica New York City Triathlon. Binder will continue to fundraise for OAR in conjunction with the race’s Drive For Rebecca charity program. Economos also put a lot of heart into his fundraising effort, raising money in honor of a good friend’s son with autism. While he simply “[hoped] to make a small difference,” Economos ended up raising an impressive $7,800. Ayiesha and Ragui Selwanes did their part by returning for a second year on the OAR team and beating their previous fundraising total, raising $8,900 this year. “We don't pursue this cause to cure our niece,” the Selwanes wrote in a message to their friends and family, “Rather, [we hope to grow] smarter and more well equipped in helping her develop a full and meaningful life. While through her parents, and the love of family and friends, she has been afforded many privileges, the reality is that there is still so much that we don't understand.” It is the pursuit of such an understanding that continues to inspire OAR’s runners, staff, and researchers. Thank you, NYC Half team, for giving this race your all! Why I RUNIt Only Takes One Reason “My brother’s name is Henry. He’s 18. We are very close. He’s lots of fun to spend time with because he is so child-like. He’s very inquisitive, witty, and possesses a lot of energy which radiates on to everyone around him.” When Monica Punjabi, 24, describes Henry, who as a young child was diagnosed to be at the more severe end of the autism spectrum, she is describing the reason she runs.
Punjabi, who lives with her parents and Henry in Boston, Mass., is new to the RUN FOR AUTISM, having recently completed her first run, a half marathon in New York City on March 20. Through that one effort, she raised more than $3,500 for OAR. Like many other RUN FOR AUTISM team members, Punjabi came to OAR because she wanted to get fit. “I was pretty active in college but after I graduated and started working in finance, I was sitting at a desk all day. I needed a way to stay in shape, so I began training for a half marathon.” She chose the New York City Half Marathon, only to be told there were no registrations left. She turned to the charity list and soon found OAR. “I looked at the Web site and read the newsletter. It seemed like a wonderful organization. Autism awareness is a cause I’ve always felt strongly about, and running for OAR felt like a great way to contribute to it.”
When she found OAR, she not only found a great cause, she also found a great resource. She has passed on OAR’s Web site to her mom and dad for their information. “The information is relevant to what we want and need to know. OAR does a great job of connecting families going through the same experiences and educating us on developments in the autism community. My mom and dad are dedicated to Henry’s wellbeing and are always seeking out ways to learn more about how they can help him. Henry has brought us closer together and taught us important virtues, such as perseverance.” While her brother stays active and busy, his diagnosis means he cannot read or write, suffers from anxiety and depression, and needs full-time care, which “our mother selflessly provides,” Punjabi says. That doesn’t mean Henry doesn’t live a full life, Punjabi points out, going to a special needs school, participating in an Arc program, volunteering at local church, and being involved in the community as well. His parents, sister, and a wider family circle as well as friends provide him with an active social life. In fact, Punjabi’s run for autism turned into a family affair. “My parents, three of my cousins, a couple of friends, and Henry all came to cheer me on and see me finish. Henry was super excited.” One reason to run, a lot of people educated about autism, and thousands of dollars raised for autism. That’s a great way to add up numbers. |
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Mark your calendars now for the Colonial Beach Blues Festival in Colonial Beach, Va., on June 25 and 26. Why? Well, for one, it’s going to be a rockin’ good time with 12 outstanding musical acts. Two, it’s fun at frugal prices, only $15 for one day and $25 for two.
Julie LaBerge is the mother of 14-year-old identical twins sons with autism and a typically developing 9-year-old daughter and is happily married to her husband, David. She is employed as the director of special education & pupil services as well as a school psychologist in the Bonduel School District in Bonduel, Wisconsin. She also serves as a consultant and resource for parents, educators, community agencies, and support groups and has been a guest speaker numerous times on several disability topics, with a focus on autism spectrum disorders. She has taught graduate courses related to autism for Viterbo University for the past 10 years.
As participants in this national project, several staff members, including general and special education teachers, speech and language therapists, and an occupational therapist, along with a parent representative, committed to learning more about evidence-based practices that could be used with students with autism spectrum disorders in our school district. 
