March 2014 A Supplement of the
A SPECIAL NEEDS MAGAZINE
The Hidden Disability Page 12
Schools Working with Therapists Page 10
Front Door Initiative
Rule Changes at Disney
BAIS EZRA d a e L & e v i r h T s l a u Where Individ
d e t a Elev Lives From infants to seniors, from siblings to parents, OHEL Bais Ezra provides a lifetime of comprehensive person-centered services to those with intellectual disabilities.
• After School Programs • At-home Behavior Training • Outreach Programs • Camp Kaylie • Respite Community Education • • School Holiday Programs • Supervised Residences • Community Habilitation • Shabbatons • Support Groups • Day Habilitation Programs Shabbos B’nos • • Supportive Apartments End of Summer Programs • • Summer Sleepaway Camps • Winter Camps • Family Reimbursement • Sunday Recreation Programs • Medicaid Service Coordination SERVING • Motzei Shabbos Programs BROOKLYN, QUEENS, ovative Programs: n n I ew N MANHATTAN, • Non-Medicaid Service Coordination STATEN ISLAND & ployment Training • Em al Services • Intensive Behavior tions • Free Clinical Evalua • Support Groups • Sibshops
1-800-603-OHEL LIVE HELP ONLINE www.ohelfamily.org CONFIDENTIAL RESPONSE email@example.com ALWAYS ON CALL
INSTITUTE FOR TRAINING
By The Editors
About This Issue
he special needs world is evolving and we at Building Blocks are evolving alongside it. Often in the news, from the tragic plight of Avonte Oquendo that raised awareness of the issue of wandering, to the many heartwarming stories of people with disabilities that have succeeded in the world of media, fashion, academia and sports, the disabilities community is becoming better informed and more able to advocate for transparency, change and the right to the acceptance and fulfillment that they deserve. Building Blocks has a new format, which will make it an even more indispensable resource to effect change for people with disabilities, their families and the general community. More frequent, quarterly publishing will enable it to
feature current and relevant issues that affect people with disabilities, with an informative and practical approach that will make a difference in family’s day to day lives. In-depth features will allow for exploration of issues and enhanced understanding of differing viewpoints. The spotlight on new treatments, products and resources, and familiar favorites like Mother in the Shoe will remain. This edition offers a wealth of information on current topics including: Hidden disabilities and the issue of disclosure; the problem of wandering and strategies to manage it including the latest technological advances; the backlash of families against Disney’s new procedures for people with disabilities; and an exploration of the very painful topic of judgment against par-
ents when their child acts out in public from the multi-layered perspectives of parents, storekeepers and bystanders. The feature on employment offers a new paradigm for thinking about people with disabilities leaving behind the idea of chesed and embracing the notion of a mutually beneficial arrangement that allows both employee and employer to succeed beyond imagination. We welcome your feedback, suggestions and comments at firstname.lastname@example.org as we continue our journey of providing information that is critical for parents; and informative and eye opening for the community - offering new perspectives and forging a more understanding and inclusive community for us all.
Our 12th Year
For more information, please contact: Simcha Scharf - Director Phone: 718.963.0090 • Fax: 718.963.0026 266 Penn Street • Brooklyn, NY 11211 email@example.com • www.campruachhachaim.org 44
March March 2014 2014
CONTENTS 4 7 8 10 12 16 20 22 24
From the Editors
The Paradox-Introduction By Rabbi Yaakov Klass
Compiled by Avigayil Perry
FEATURE ARTICLES Yeshiva X and the Special Services Dilemma By Yaakov Kornreich
By Gila Arnold
Developmentally Disabled Employees Shine in the Workplace By Sandy Eller
Deepening the Plot: Expanding Play and Conversations with Your Child By Serena Wieder, PhD
“Knock, Knock” “Who’s There?” The Front Door Initiative By Marc R. Katz, MA
DisneyWorld’s New Disability Regulations: Not That Helpful By Elisheva Stein
26 28 30 32 34 38 39 40 42
Wandering Children: How to Protect Children with Autism By Leah Rothstein
Occupational Therapy (OT): The tools you need to succeed By Mori Sokal
Insights Into… Tourette’s Syndrome By Rachel Wizenfeld
DEPARTMENTS How Can We Help?
By Ilene Chaya Klass and Juby Shapiro
Gluten Free Recipes
Ask the Expert; OT
Showcase and Products
Calendar of Events
Moshe Klass firstname.lastname@example.org
By Yaakov Kornreich
About The Cover The front page illustration commissioned for the cover story was created by Dena Ackerman, who is a fine artist and illustrator, whose paintings hangs in private homes, schools, and corporate offices. She also illustrates for magazines, websites, childrenâ€™s books, and teaches drawing and painting to adults. You can see her work at www.denaackerman.com.
Special Needs Pacesetters; Interview with Dr. Josh Weinstein
FAMILY FORUM EDITOR: Eli Stein
A SPECIAL NE EDS MAGAZIN
A Supplement of
The Hidden D
Schools Working with
Therapists Page 10
Front Door Initiative Page 22
Rule Changes at Disney Page 30
Heshy Korenblit email@example.com David Hoppenwasser firstname.lastname@example.org Leah Postelnik Leah@buildingblocksmagazine.com
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Elisheva Stein email@example.com
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Shoni Eidlisz, Rabbi Yaakov Klass, Hindy Klass, Abe Kopolovich, Melanie Kwestel, Brocha Holczer, Dana Ledereich, Breindy Rosenblatt, Juby Shapiro, Paul Stadler, Jared Wasserman, Rabbi Mayer Waxman, Rifky Weinberger
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Building Blocks Magazine is published in collaboration with the Jewish Press. Reproduction in whole or in part in any form without prior written permission from the publisher is prohibited. The publisher reserves the right to edit all articles for clarity, space and relevance. Building Blocks Magazine assumes no responsibility for the content of advertisements. The views and opinions expressed in this article are those of the authors and do not necessarily reflect the opinion of Building Blocks Magazine or the Jewish Press.
By Rabbi Yaakov Klass
ver look in an elementary or high school yearbook and scan the comments? Such a read borders on the entertaining. However, when revisiting the same yearbook many years later, the reader may be in for some ironies. “Joseph, a great sports enthusiast, diligent and organized, a real leader, science is his thing, destined for great things to come.” “Miriam, real nice kid, very well liked.”
rating the abilities of their friends. Now, fast forward – ten, twenty or thirty years later. Joe is now grossly overweight. He has a job but nothing that can be described as being that of a “real leader.” His present situation doesn’t fit with the description in that school yearbook years ago. Miriam’s yearbook entry may be a euphemistic description of a wallflower who is both socially and academically a low achiever.
“His present situation doesn’t fit with the description in that school yearbook years ago…” True, these are bios written by their peers who are themselves just kids. Nevertheless, we must assume that at age 12 or 17, those who distinguish themselves with an ability to write and edit their yearbooks are already imbued with a keen perception at viewing and
Yet meet her now, twenty years later, and she has a husband and three kids, has just opened her third franchise crafts store and is a member of numerous civic organizations. What happened to cause this lopsided result?
One’s early years are often overlooked, if not bypassed, very often not only by the individual or even her peers, but her parents and teachers who assume that this particular child is unable to succeed in school. In fact, this quiet child knew much more than even she realized and had greater ability than even her closest supporters imagined. Much knowledge was accumulating in the recesses of her brain all the while lying dormant until the time came that she made some big change – new elementary school, new high school, or even moving on to college. Coupled with a newfound confidence, it all came pouring out. On the other hand, some young people have certain innate capabilities but, as the saying goes, “easy come, easy go.” Neither parent nor teacher saw any reason to challenge the child to further accomplishments. Nowadays, due to routine pressures and exacerbated
by today’s more technologically complex society, he not only lost all drive for further advancement, but finds himself on a road of steady decline. We clearly see that the early years serve as important building blocks for one’s later growth. My teachers would often quote King David’s words (Psalms 126:5), “Ha’zor’im b’dim’ah b’rinah yiktzoru – Those who tearfully sow [with great effort], will reap out of mirth.” Commensurate to one’s own efforts and diligence are the results. Just as important, commensurate to our efforts, input, and vigilance are the results. As parent, teacher, or mentor, we are tasked with maximizing and assuring each child’s potential as a confident and productive member of society. Rabbi Yaakov Klass, rav of Congregation K’hal Bnei Matisyahu in Flatbush, Brooklyn, is Torah Editor of The Jewish Press. He can be contacted at email@example.com.
Early Intervention Services
For children birth - 3 years with special needs
Services Provided l Evaluations l Feeding
Therapy Education l Nutrition Counseling l Service Coordination l Family Support/Counseling l Speech/Language Therapy l Physical & Occupational Therapy l ABA Program – Center & Home Services l Special
Routines Based Interventions & Collaborative Coaching
TO REFER YOUR CHILD TO THE NYS EARLY INTERVENTION PROGRAM, CALL 311. Challenge is a contractor of the NYS Department of Health, Bureau of Early Intervention, a public program for children under the age of three who are either suspected of having or at risk for developmental delays or disabilities. This program is approved, regulated and funded by NYS Department of Health and the NYC Department of Health & Mental Hygiene. All Services are provided at no cost to parents. Health Insurance may be used for approved services. A child’s eligibility for the program can be determined only by state-approved evaluators under contract, and all services must be authorized by the NYC Early Intervention Officials.
For more information about CHALLENGE: T. 718.851.3300 W. challenge-ei.com March 2014
T Compiled by Avigayil Perry
Pioneer Profile Anne Sullivan – The Miracle Worker
Sullivan spent her entire adult life privately teaching Helen Keller, born blind, deaf, and mute. Sullivan’s difficult upbringing included losing a mother to tuberculosis, enduring an abusive and alcoholic father, and becoming blind from trachoma. Still, she persevered to overcome her past, graduating as valedictorian in her class at Perkins School for the Blind in Boston, Massachusetts. Not long after graduation, she became Keller’s lifelong teacher. At six years old, Keller was an unruly child but made vast improvements in learning upon coming to trust Sullivan. Sullivan made major progress in the education for the blind, deaf-blind, and visually impaired. Her pedagogical practices are still implemented nowadays. Author Samuel L. Clemens (Mark Twain) called her (Source: American Foundation for the Blind) a “miracle worker.”
In the News In 2015, the Education Department plans on thoroughly scrutinizing graduation rates as a strong assessment for individual state performance on special education programs. This could impact what states will be allowed to do with federal aid for special education. The majority of students with disabilities are held to perform at grade level standards with the right supports. Graduation disparities in the 2011-12 school year were based on a “four year adjusted cohort graduation rate,” measured by the number of diplomas earned divided by the number of students who entered ninth grade four years prior. Disparities ranged between 3% and 43% throughout the country. Next year, the Office of Special Education (OSEP), responsible for overseeing states’ fulfillment of IDEA requirements, hopes to implement a results driven accountability plan, including careful attention to graduation rates, dropout rates, and other “performance” indicators. The OSEP also hopes to create systemic improvement plans, enabling each state to present a plan for how they will yield better results for students with disabilities. (Source: Education Week)
Paralympics in Sochi
Competition from the 2014 Winter Paralympic Games held in Sochi, Russia, March 7-16, following the regular Olympic Winter Games at the same location. The games featured 72 medal events in five sports. It involved 550 athletes from 45 nations with six different categories of disabilities, including amputee, cerebral palsy, intellectual disability, wheelchair, visually impaired, and others.
5 Questions for… Rabbi Dr. Mordechai Salfer, Ph.D. serves as the founding executive director of Tree of Knowledge Learning Centers.
How did you get involved in online schooling? After my wife and I started a hospital tutoring/educational program for chronically and terminally ill children, we decided that an online charter school would best suit their needs. Eventually, the online schooling program became the Tree of Knowledge, or eTree program, offered to all children. Can you describe other forms of alternative education that you have been involved in? My wife and I began Tree of Knowledge Learning Centers in 1998, providing comprehensive educational services and therapies. In addition, I started and serve as the Rosh Yeshiva of Yeshivas Doresh, a boarding yeshiva high school/post high school in Miami, for boys who have social or learning challenges, and who have been unsuccessful in the mainstream classroom. What kinds of students would be the best candidates for online schooling? Some want to finish high school early and are highly motivated while others dropped out and want to catch up. Other students have families who have moved or switched schools mid-year, and the transition to a new environment is too much additional stress. A lot of students do credit recovery because they failed a few courses. Still, others need to keep up with their studies while taking a break from school for various reasons. How has the eTree program improved online schooling? We offer the hybrid program requires face time in addition to the online curriculum, allowing the student to work with a teacher for a number of hours per week. How should a parent respond to criticism regarding one’s choice to homeschool? Raising a child means doing what is best for that child. Parents must realize that the goal of raising a successful child is a lifelong endeavor.
In the News Sequestration, or federal budget cuts, has deeply impacted special education, resulting in larger class sizes, decline in services, and less providers. According to a survey conducted by the advocacy group, National Center for Learning Disabilities (NCLD), comprised of 1,065 respondents, 52.7% of parents noted modifications in services, and 29.5% declined to comment. 32.2% observed a rise in class sizes, 27.4% experienced a removal of service providers, and 13.1% had a child’s placement switched due to budget cuts. Under the Individuals with Disabilities Education Act (IDEA), Congress will cover a maximum of 40% of the average that states spend per student with disabilities. Due to sequestration, federal special education funding lost $579 million. Congress currently only covers 14% of this average, the lowest in over a decade, stated the NCLD. (Source: Huffington Post)
T Did You Know?
In the 1960’s, an increasing number of schools started accommodating children with disabilities, yielding the Education of all Handicapped Children Act, stating that the federal government will protect the rights of children with disabilities. Source: Specialednews.com
“Movie With Max” Sold Out When 23-year-old Max Colson, who has autism, was watching the previews at a movie theater near Plymouth, Massachusetts, in December, he became frightened and loud. He and his mother, Emily Colson, were subjected to a rain of “ugly” insults from other members of the audience and were forced to leave without being given a chance to explain the situation. When Renee Walston, a member of Emily’s church, read of the incident on Emily’s blog, imagined JPsheAD: 99 how such an experience would impact her own young children, and decided to arrange a special showing of “Muppets Most Wanted” at the Regal Cinema multiplex in Kingston, Massachusetts, on the evening of March 27, just for children with special needs. Unsure of the public response to the event, which she promoted as “Movie with Max,” Watson rented the smallest available theater, with 94-seats, but demand for tickets, especially from other parents of children with autism, was so great that it was moved to a 294-seat theater, which rapidly sold out.
please re-size ad to 8 5/8" wide x 5 5/8" high and change addressDid as You noted in the PDF. Know? Following World War II, advocacy groups for disabilities, such as The United Cerebral Palsy Association and Muscular Dystrophy Association, were founded, promoting universal education for every child, including those with special needs. Source: Specialednews.com
Cholesterol Medicine May Slow MS
A University College of London research study on 140 people with late stage multiple sclerosis indicates that simvastatin, a medication routinely used to control cholesterol, slowed the shrinkage of brain matter in patients with secondary-progressive MS by 43% compared to a control group, over a two year period. Larger clinical trials are being planned to confirm the finding.
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his article is about a serious educational problem within our community which very few school administrators are willing to talk about openly - the need for more mainstream day schools and yeshivos to cooperate more willingly and effectively in providing therapy and educational services for their students during the school day. Most of these therapies and services are provided at government expense under the student’s Individualized Education Program. They are identical to services typically provided to children with learning disabilities in Special Education programs. The topic is so sensitive that the few principals and school administrators who were willing to talk about it for this article invariably insisted that neither their name nor the name of their school be mentioned in this story. Those willing to talk voiced their frustration at the lack of resources in their school that would give their students the extra help they need. Many schools simply do not have enough rooms available to provide such services in a proper environment, or enough administrative help to coordinate the scheduling of such services for individual students during the day. Over the past 25 years, the religious community has established its own dedicated programs for
students with learning disabilities. Organizations formed by the parents of such children, such as P’tach, and joint programs for children with learning disabilities formed by the community schools themselves, such as CAHAL and Ichud, sponsor Special Education classrooms in a religious environment to meet student’s needs. They have demonstrated that Special Education techniques and professional therapy can enable children who otherwise could not learn in a mainstream classroom environment to overcome their learning disabilities and eventually lead normal, successful adult lives. But the enrollment in those programs represents only a fraction of the total number of children in the community who would benefit from the same kind of services. Within the nation’s public school system, children with learning disabilities represent about 5% of the student population. But they represent less than half of the 13% of American schoolchildren between the ages of 3-21 who qualify for government-supported services under the Individuals with Disabilities Education Act (IDEA). They include children with speech or language impairments, intellectual disabilities, emotional disturbances and many types of physical impairments. Even that does not represent the full extent of the problem. There
are many more children who suffer from milder forms of these impairments which do not meet the minimum requirements (25% of certain criteria in at least one area) to receive state-provided services free of charge, but who would doubtless also benefit from them. This is no doubt true for many of the students in the Jewish community’s mainstream schools today who could do much better academically if they got some of these kinds of help within the context of their normal school day. The problem is far more widespread even in our mainstream Jewish community schools, than many of us would like to realize. According to one administrator at a large school, let’s call it Yeshiva X, which is cooperating with parents in such an effort, about one-third of the school’s student body is receiving these services in one form or another, or some other type of professional counseling. As you might imagine, scheduling such services from outside providers during the school day without unduly interfering with regular classes for a third of the student population of a large school can itself be a full time administrative job. As the religious community has gained a better understanding of learning disabilities and the effectiveness of Special Education programs and the therapy and teach-
ing techniques these programs employ, many more parents have had their children evaluated and qualified for these governmentfunded services as their right under federal law. The next hurdle for these parents, getting their child’s school to cooperate in scheduling these services during the school day, is often a much more difficult challenge than one might expect. To their credit, the administrators of Yeshiva X are willing to cooperate in providing the services their students need. They see it as part of their responsibility to the students. In fact, they willingly serve as advocates for their students, to make sure that they receive all of the services to which they are entitled at the highest possible level. However, they do not want that willingness to jeopardize the reputation of their school as one that serves the entire spectrum of families and students in the community. As a result, they do not dare publicize their cooperation, for fear of being swamped with applications from parents desperate to get their children who need such services into a good school. Many other yeshivos and day schools are unwilling or reluctant to cooperate in the provision of these services to their students, for a variety of reasons. Some believe that their cooperation will hurt their carefully cultivated reputations for academic excellence, and make it more difficult for them to attract top students from families seeking the best school for their child. Others may not want their classes to be disrupted by students coming and going to receive services throughout the school day. Others may not want to allow outside service providers into the school whom they have not screened to work with their students. Other school administrations may simply not want to be bothered with the significant administrative hassles involved. According to an administrator at Yeshiva X, for the students to get the full benefit of the services they are receiving, there needs to be a team effort in which the parents, the student’s teacher, the service provider and the school administration are all on the same page of a well thought out game plan to help the child to succeed. In order for this to work, the child needs also to be properly diagnosed and his progress closely monitored.
The teacher, who probably does not have any Special Education training, also needs to understand the child’s specific issues problems and the goals of treatment, so that they can properly monitor the child’s progress in the classroom. Adjustments may be necessary in the child’s curriculum. Educational goals may need to be lowered to bring them within the child’s reach, enabling a feeling of accomplishment when the child reaches the goal, and encouraging the child to reach the next milestone. When a child is pulled out of the classroom for services, it has to be done with sensitivity. The child must not feel that they are being unfairly singled out, and helped to understand that the services are being provided for their benefit. When administered sensitively, the services can actually reinforce the child’s sense of self- worth, improving the outcome. Proper coordination of outside services involves a lot of effort and follow-up by school staff. As practical matter, most yeshivos simply don’t have enough administrative manpower available to do that for a significant portion of their student body. The result is often a lost service session for the student. If a therapy session is missed, it is gone forever, and the child will never get it back. In the past, mainstream Jewish schools were not in a position to offer much help for students who had trouble keeping up in class. Classroom teachers do not have enough time to provide much
personalized attention for an individual student. When a student would fall behind in their class work, parents were advised by their child’s teacher to spend more time helping their child with the homework, or to hire a tutor, at their own expense, to work on the subject or skill with which the child was encountering difficulty. More recently, schools would respond to students who would fall behind in specific subjects by setting up resource rooms to supply a limited amount of extra help, which was sometimes enough for otherwise capable students to make a difference. Schools which are large enough to run multiple parallel classes at the same grade level often deal with the problem of students who need more help to keep up by assigning them to the same class. The level of that class’ curriculum can then be reduced as necessary to better match the academic ability of those students. The class can also be assigned additional educational staff, if available, to provide each student with more personalized assistance. Parents are aware of this process, and some will lobby the school administration to re-assign their child to one of the higher-level classes, whether that is in their child’s best interests or not. Today, community schools are more willing to cooperate with the parents of their students. They are willing to invest the time and effort to enable their students to receive the outside services they need.
This is never an easy decision in a yeshiva environment, when there is never enough money to meet all student needs. But some community schools, such as Yeshiva X, have made outside service coordination a high priority, creating the administrative resources necessary to manage these services at a considerable sacrifice. Unfortunately, there are other schools with the opposite attitude. Their primary goal is to cultivate their elite status rather than serving the individual needs of each student. They only admit students who fit comfortably into their idealized stereotype of excellence. If a weakness does emerge in one of their students, they are not interested in cooperating with the parents in arranging for the outside services the child needs. Instead, they will not hesitate to tell the parents, “Your Child Doesn’t Belong Here – So Move On.” As a result, there are too many children in our community who could be helped by these available services, but who are being denied access to them by their school. Some are shuffled from school to school, and failure to failure as their parents become increasingly desperate to find a cooperative administration. Are more of our children facing such problems today? If so, perhaps it is due to the way they were raised at home during their preschool years. Were they allowed to spend too much time watching TV or playing videos? Did they get
enough personal attention from their parents and care givers? Child development experts say that children under age 5 should get at least 20 hours a week of face-to-face interaction with their care givers, being read to and learning how to socialize. Those who do not get that level of attention may be entering school inadequately prepared. A child’s performance in the classroom also suffers when their environment at home is impacted by illness, financial hardship or domestic dispute. Today, with so many families in crisis, our community-minded schools are finding it necessary to arrange for interventions to protect their students and to ease their psychological stresses when their parents no longer can. Schools like Yeshiva X which have the best interests of their students at heart, are extremely cooperative in taking the initiative and working with the parents to provide each student with the support services they need. While some yeshivos are abdicating their responsibilities to their students who are failing, others are stepping up, albeit quietly, to do whatever they can to help. They are among the unsung heroes of our community today.
Yaakov Kornreich is the Senior Editor of Building Blocks and the Health and Living Supplement of the Jewish Press. He has been writing for Jewish publications and organizations for more than 40 years. Most recently, he is the co-author of “Young Israel at 100” recently published by the Na-tional Council of Young Israel. March 2014
Cover Story By Gila Arnold
was in college, taking an audiology class for my speech therapy program, and we were given an assignment to do an audiological screening on each other. A friend and I paired up, and we went into the booth together. I switched on the machine, and tested her right ear. Beep. Beep. She raised her hand as I switched frequency levels and recorded her responses, like we’d been taught. Then I tested her left ear. Ten decibels. Beep. No response. Fifteen. Twenty. Still no response. Forty, fifty, sixty. The sound should have been at shouting level, but still, my friend did not raise her hand. Convinced there was something wrong with the machine, I looked up, confounded. And that’s when she told me she was deaf in one ear. I’d known her already for several years, but I never would have suspected she had a disability. Indeed, she had learned to compensate for her difficulty so effectively that she was able to lead a normal life and to the outside observer (who wasn’t wielding an audiometer), the disability was invisible. However, for many people, the disability they have is not so easily compensated for, and, while the blessing of having a disability hidden from the naked eye is that outsiders don’t treat you any differently than anyone else, this can be its curse as well.
The Price of Hiddenness Hidden disabilities can run the gamut from mental disorders to cognitive impairment to physical illness. While the ailments can be quite varied, the common thread among them all is that, unlike someone in a wheelchair, or with an easily-recognizable disability like Down Syndrome, individuals with these conditions cannot count on automatically receiving public sympathy and support for their struggles. “While I don’t fit into any neat diagnosis, I have symptoms of Complex Post-Traumatic Stress Disorder (PTSD),” relates Leah*. Complex PTSD is a much more involved psychological disorder than the standard PTSD, emerging as a result of prolonged trauma, and involving certain symptoms similar to a personality disorder, including a fear of trust-
ing people and of responsibility. “I get overwhelmed emotionally and tire easily, which prevents me from coping well in situations of responsibility,” she says. There have been many side effects of her disability in her life, foremost among them the collapse of her marriage, which led her to begin therapy. But the fact that her disability is hidden leads to further complications and misunderstandings. “While I’m not entertaining any shidduch suggestions until I progress in therapy, I can’t explain to people why not, and this makes things very uncomfortable,” she relates. “So rather than m a k ing a blanket statem e nt of ‘not r i g h t now’, I have to give an excuse e ach time, a n d that
causes them to start wondering why not, and speculating.” Even her immediate family doesn’t know of her disorder – part of the pain of mental illness is that many people still believe that it’s not a ‘real’ illness, that the individual is just being lazy and could snap out of it if she wished - and the loneliness of having to deal with the disability on her own is yet another repercussion of its being hidden. “People make comments all the time,” says Miriam*, who has ulcerative colitis, an inflammatory bowel disease similar to Krohn’s, since the birth of her second child. “I’m very thin as a result of the disease, and get intrusive comments from other people like, ‘Are you eating enough?’ ‘Is everything okay?’” The disease is aggravated during pregnancy, and she often gets comments from others about her lack of coping. “I think people think I just need to toughen up and deal with pregnancy better, that I don’t appreciate what a bracha it is.” Her disease can also lead to awkward situations, such as when she was by some relatives for Shabbos and didn’t eat the soup because the woman told her she’d combined that week’s soup with soup from the week before. “Flare-ups can be triggered by viral and bacterial infections, so I need to be very careful about eating fresh foods,” she explains. Like Leah, she has chosen to hide her illness even from some close family members. “Only a good friend and my parents know about it,” she says, explaining that she refrained from telling her in-laws because they are the worrying types who would constantly be asking her about it.
To Disclose or Not to Disclose
The issue of disclosure is a very sensitive one among those with hidden disabilities; when you’re a parent making this decision about your child it can be even touchier. “When my ten-year-old daughter received her diagnosis of mild Asperger’s Disorder, in a certain sense, it was helpful to have a label which could lead to a course of treatment,” says Sima*, a mother of four living in Jerusalem. “It also made us eligible for government services that we otherwise couldn’t have gotten. But aside from that, I felt that giving her a label had more negative consequences than positive.” Though her symptoms remain what they’ve always been (“We always knew she had issues; we just never had a name for it,” says Sima), people look at someone differently once they have an official ‘disorder’. For this reason, Sima and her husb a n d h a v e chosen not to d i s close the diagnosis – not
even to their daughter herself. “I don’t want her to be branded,” she explains. “She’s perfectly capable of blossoming as
long as she’s given the chances she deserves. I felt that if I would tell her that she has Asperger’s but tell her not to reveal it to anyone else, that would be unfairly burdening her with a secret, especially because part of her social disorder is that she can’t understand what’s so important about keeping it quiet.” What Sima does do is explain to her daughter why she is the way she is, but without identifying it with the specific diagnostic name, which carries negative connotations in the eyes of others. Thus Sima is helping her daughter to understand herself, without exposing her to being “branded” if she reveals her diagnosis by name or the stress of keeping it secret from others. They go for therapy once a week, part of which involves parent training for Sima and her husband. Additionally her daughter receives counseling in her school, which is aware of her diagnosis and has been, in Sima’s words, “exceptional in the way they’ve dealt with this.” “Last year my daughter’s math teacher had a screechy voice, and my daughter, who has sensory issues as part of her disorder, couldn’t handle the voice and acted out. The school was very understanding, and arranged for her to have a private math tutor instead.” Some might say that by telling the school of their daughter’s diagnosis, the parents have, in fact, disclosed her condition. This case suggests that in real life, there are situations when exceptions should be made for the benefit of a child. In such cases, discretion and sensitivity can be as important as strict confidentiality. Rivka*, a mother of three adults with Asperger’s, concurs with Sima’s concerns of disclosure, having made a change in her own policy over the years. “All the time my children were growing up, I was determined
not to hide their difficulties,” she relates. “I felt other people who had kids with invisible disabilities could benefit from my ‘bravery,’ that they wouldn’t feel so alone in their troubles. I felt people who didn’t know anything about Asperger’s would benefit from seeing that someone with Asperger’s could be mainstreamed and almost normal.” However, a few years ago, the Diagnostic and Statistical Manual of Mental Disorders (DSM) revised its definition of Aperger’s, placing it on the spectrum of autism rather than in its own category, and for Rivka, everything changed. “Now, people assume that if I say ‘Asperger’s’, I’m really saying ‘highfunctioning autistic’, and having to carry such a label, with such a stigma, isn’t fair to my children. So I no longer announce it.” Her children have a mild case of the syndrome (“While professionals blurt out the word ‘Asperger’s’ almost immediately when they meet them, laypeople just see them as slightly strange.”), and she has made the decision not to use the label in shidduchim, after getting burned from it. “One recent reference that I called for a shidduch wormed the word out of me, and we were rejected immediately, although a couple of people who knew both my son and the girl thought it was worth a try.” Just like a rose, Asperger’s, or any other disorder for that matter, would present the same whether or not it’s called by its label. Unfortunately certain disorders carry such a stigma that people run when they hear the names, without bothering to stop and see the person for who her or she is. Both Sima and Rivka say that they try to give their children a sense of who they are, building up their strengths and helping them to understand and receive the tools to overcome their weaknesses. While not advocating hiding actual facts and behaviors from potential shidduchim, they both agree that hiding one potentially explosive word is simply giving their children the chance to prove themselves for who they are. Under the best of circumstances, disclosure for shidduch purposes is an extremely delicate process. While, obviously, from both a
halachic and ethical sense, no one would justify any kind of deliberate deception, nevertheless, Rivka and other parents are convinced that applying a specific term would convey a grossly misleading impression about a potentially viable shidduch candidate, and choose instead to use alternative, but still accurate language to convey the same information without the stigma. It is always advisable to consult a rav in such cases. There are other parents, however, who feel that choosing to be open about their children’s disability has helped them in the long-run. “My son was diagnosed with learning disabilities at the age of six,” relates Temima*. While his subsequent educational road was long and bumpy – involving a stint in a special educational institution in their North American hometown which was not an appropriate setting for him, and, after making Aliyah following his bar mitzvah, enrollment in an Israeli middle school and high school which also did not work out (he ended up dropping out of school after ninth grade, which was effectively the end of his formal education) – they made the decision to disclose the disorder to family and friends, making it easier for them to understand the rough time he was going through. “Though, obviously, not every acquaintance knew, and I’m sure he got comments like ‘What’s wrong with you?’ he was a tough kid, with a nice dose of chutzpah, and that’s the way he handled his disorder.” Now thirty-five, he is married, with his own family and his own successful business, and – what is more – he seems to have overcome his learning disability as well, with the boy who had such trouble with reading now self-educated primarily through reading books on his own. “He told us recently that he’s considering going for a university degree,” says his mother. “He doesn’t need it – but I think he just wants to prove that he can do it.” Intentional and strategic disclosure can help both the parents and the child gain access to programs, therapies and strategies that will help the child overcome or comMarch 2014
Cover Story pensate for his or her disability, and help him gain greater acceptance and understanding from others. More importantly, if done with proper sensitivity, disclosure can minimize the shame and confusion that often accompanies a hidden disability and may assist the child in growing up with more confidence, openness and the skills to navigate into a successful adulthood.
A Psychological Toll Sima describes the emotional isolation she sometimes feels by not having others understand what her daughter is going through. “No one appreciates how much time I have to devote to my children!” Aside from her daughter, she also has a younger son with language, sensory and impulse issues. “I devote my entire life to my kids and my work. Friends ask me to come out to lunch with them, and they don’t understand why I’m always turning them down. I have absolutely no time for anything else.” She has chosen not to reveal her daughter’s disorder even to her extended family, including her parents and some of her siblings, because, “in my case, they aren’t open to being supportive. I would get a lot of judging and advice, but not the support that I need.” At family simchas, she will often sit on the side with her daughter, away from the crowds and noise that can trigger a meltdown. “I’m sure I antagonize some of my family members at time because they feel that I’m not there for them enough, but I’m busy with my children, and this is what my tafkid (job) is right now.” In her younger son’s case, he will 14
March 2014 2014
Disclosure in the Workplace
sometimes act up in public, and she’s sure other people are disapprovingly thinking, “That lady doesn’t know how to manage her kids,” but she has trained herself not to care, and to do what’s best for her son. “Hashem gave me a bracha that my oldest daughter is calm and helpful and happy to do what she’s told – a real treasure! So I gained confidence with my first that it’s not that I’m a worse parent than anyone else.”
Currently a hot topic, the question of whether to disclose a disability to a current or potential employer has legal implications as well as emotional ones. People with disabilities in the U.S. are covered by the Americans with Disabilities Act (ADA) and the Rehabilitation Act, both of which provide for protection from disability-related discrimination. However, an employer can only be held to these mandates and provide work-related accommodations if he’s aware of the disability. According to the U.S. Department of Labor, a person with disabilities should understand what his entitlements are, as well as his responsibilities to an employer. While there is no obligation to disclose – and they recommend disclosing only on a ‘need to know’ basis, to the person directly responsible for
While those with more overt disabilities don’t have the luxury of choosing whether or not to disclose their illness, the psychological impact of keeping a disease hidden can often be just as challenging as the disease itself. “Hiding your disability from the outside world means cutting yourself off from support,” says Beryl Tritel, MSW, a Ramat Beit Shemesh-based therapist who runs a private counseling practice. “The effort to cover up for your disability can be highly stressful, and often results in negative life consequences that add to the stress level.” These can take the form of failed relationships or lost jobs. “Even if you don’t want to disclose to your employer your actual illness, simply telling him or her that you’re dealing with a difficult issue can make a big difference in how understanding he is of what might otherwise be irresponsible behaviors.”
hiring and/or evaluating job performance, or the one authorized to provide whatever accommodations are required – if a person chooses to disclose, he has a right to expect full confidentiality, to be considered for a position based on his skills, and be questioned respectfully about his disability. At the same time, it is his responsibility to be truthful about limitations that may be posed by his disability, while being positive and emphasizing his skills and merits, and how he plans on working around these limitations to contribute productively to the job. The disclosure can happen at any point in the job process, either during the hiring stage or while already employed. While some people with hidden disabilities may understandably prefer not to disclose their disability, fearing that it will prevent them from being hired, it’s important for them to take into account the implications of non-disclosure, says Beryl Tritel. She tells about a client of hers,
“She has chosen not to reveal her daughter’s disorder even to her extended family, including her parents and some of her siblings, because…”
who kept losing job after job due to long-term mental health issues. “She refused to reveal anything about these issues to her employers, but this was causing havoc to her personal sense of self-worth, not to mention her financial situation.” Beryl worked with her to understand that while there might be benefits to keeping her situation under wraps, it’s important to weigh those against the benefits of disclosing at least a portion of her illness. “Recently, she was called in to her current boss, who wanted to let her go due to her lack of functioning on the job. My client decided to reveal to her boss that she was experiencing post-partum depression– though that’s really just scratching the surface of her disorders – but from that information alone, the boss decided to give her another chance and has been much more understanding and accommodating of her disorder. The disclosure of disabilities in the workplace benefits the employee by explaining their strengths and needs to their employer, who can then make accommodations or give them assignments that are more suitable to their strengths. Under the law, employees still retain the option of guarding their privacy by withholding additional information about their disability which does not impact their onthe-job performance. Disclosure is a delicate balance. Deciding the costs of revealing the disorder versus keeping it undisclosed is a calculation that every person with a hidden disability has learned to navigate. It is just one more burden in an already challenged life. Hidden disabilities come with the advantages of being able to mainstream more easily and the choice of whether or not to openly acknowledge one’s challenges. These individuals have the right to make that choice based on what they believe will be more personally advantageous to them. Our job as outsiders is to give them the acceptance and support that they so richly deserve. *names have been changed Gila Arnold works as a freelance writer and a speech therapist. She is a regular contributor to several Jewish publications. Gila lives with her husband and children in Ramat Beit Shemesh.
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Developmentally Disabled Employees Shine In The Workplace By Sandy Eller
sk any employer what qualities they look for in a prospective hire, and no matter what line of work they are in, many of the answers will be the same. Dedication. Responsibility. Loyalty. A good work ethic. Someone who is highly motivated. While some business owners lament the dearth of candidates who possess all those qualities, there are those who suggest that there is a large pool of talented individuals who are eager to join the workforce: adults with developmental disabilities. “We have placed people in all kinds of situations,” Perela Mayer, intake coordinator at Creative Business Resources (CBR), a division of the Brooklyn based Women’s League Community Residences, told The Jewish Press. From corporate to computers, from maintenance to deliveries, her people have done it all, according to Mrs. Mayer. As with any employee, finding a good fit is crucial. “We had one individual who worked for many years at a law firm while another who started in a corporate place that was okay for a while but we found that over time it just wasn’t working out,” said Mrs. Mayer. “Eventually, he started working somewhere doing deliveries and whereas at the corporate job he was falling asleep, here he is coming out of his shell and thriving.” The key to a positive situation in hiring developmentally disabled adults is a mutually beneficial relationship. “If someone is hired only as a chesed, then over time the employer becomes resentful,” postulated Mrs. Mayer. “This arrangement works best when an employer really has a need that can be filled. 16
When it is a fifty-fifty relationship and it is a good shidduch, then everyone is happy.” One of CBR’s most memorable hires was a young woman who was hired by the Warner Brothers flagship store in Midtown Manhattan. “The store’s uniform was black jeans and a black shirt, and Sarah was hired as a greeter,” recalled Mrs. Mayer. “She asked for her shirt in a larger size so that it would cover her elbows and she explained that she couldn’t wear pants for religious reasons. Her bosses called all the way up to Los Angeles to get permission from corporate and they agreed to let her wear a black jean skirt. People loved Sarah and I saw with my own eyes that people who connected with her almost always bought something in the store.” The trend of hiring from within the developmentally disabled community seems to be gathering steam, with Forbes Magazine reporting that Allegis Group, the largest staffing firm in the United States, is making a deal to acquire GettingHired.com, a job board serving the developmentally disabled community in December 2012. “We believe people with disabilities have been an underserved part of the job-seeking community. There are many talented individuals looking for employment and many companies looking for a good fit for their organizations,” said Michael McSally, vice president of enterprise operations at Allegis. Tzvi Styler is one of the many developmentally disabled adults who have joined the workforce through the employment program at OHEL Bais Ezra. An employee at Boro Park Lumber, Tzvi takes the
train to work from his Lower East Side home every day. In the almost yearlong period that Tzvi has been on the job, he has successfully increased both the number of days and the numbers of hours he puts in at work. “Tzvi understands a lot and he helps us out,” explained Yoeli Rosenberg of Boro Park Lumber. “He is very, very nice and usually puts in a three- or four-hour day. He is a helping hand and it is working out well.” The value of being employed goes beyond getting a paycheck for Tzvi, according to Matvey Khaimov, manager of OHEL Bais Ezra’s employment program. “Tzvi is a driven individual who loves what he does and the structure of his everyday job,” reported Khaimov. “He lit up when we suggested this job to him because working is so meaningful to him. He loves being a part of the conversation when he talks to his
Yachad members Sam Miller and Rosa Barr create specialty gift baskets for YachadGifts.com with the guidance of Project Manager Sara Kramer (standing).
family and people are discussing their jobs. He has a phenomenal work ethic and takes pride in what he does. Once he starts a task, he won’t leave in the middle, even if his time is up.” Understanding the realities of working with the developmentally disabled is essential. “Employers have to understand that our people will need some help and patience but they have so much to offer,” said Khaimov. “The last thing anyone wants to do is infantilize them or treat them as if they are not capable. Everyone deserves the opportunity to have a job.” “I love going to work,” said Tzvi, who reported that he prices screws, light bulbs and chemicals and stocks hardware. OHEL Bais Ezra currently has over fifty people placed in jobs, according to Suri Greenberg, an area
coordinator at Bais Ezra who noted that, for Tzvi, the benefits of meaningful employment are obvious. “Boro Park Lumber has really seen Tzvi’s strengths and given him work opportunities that focus on those strengths. This isn’t just a chesed, he has really been incorporated into the workforce and his whole life has changed. He is so happy and is more communicative. This has made such a difference in his life.” Ann Cohen, 56, lives in a Women’s League residence in Kensington and has been working at Aura Lighting in Boro Park for over 12 years, a job that was arranged by CBR. “I do the copying machine, filing, and shredding and I go to the other office to do paperwork,” reported Ann. “When I am late, I call the office to tell them I am late.” Ann describes her co-workers as “very, very nice and very patient,” and says that getting her paycheck is extremely rewarding. “I eat out once in a while, buy my own makeup, jewelry and perfume, and pay for my own trips,” said Ann, who plans to buy two new outfits for Pesach. Ann’s boss, Heshy Kasirer, describes her “as a breath of fresh air.” “As much as it is a mitzvah to employ her, we at Aura gain chizuk from her every day,” said Kasirer, who noted that Ann gleaned much of her knowledge of Orthodox Judaism from the Internet and that she is in the process of learning both Yiddish and Hebrew and frequently tries to help others increase their level of religious observance. Kasirer also had warm words for Ann’s work ethic, noting, “She comes to work and doesn’t miss a day, and if she takes off she always gives me notice.” Ann is extremely grateful to CBR for its services. “The highest form of charity is to give someone a job, according to the Rambam,” said Ann, who spends approximately 45 minutes to an hour each way on her twobus commute to work. Ann’s coach, Sarah Goldman, praised Ann’s devotion to her job and noted how working at Aura has added a measure of satisfaction and productivity to Ann’s life. “Everyone wants to get up in the morning, have a job and feel good about themselves,” said Mrs. Goldman, who also explained that the
Eller Continues on Page 18
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Ohel builds employment success for Tzvi Eller Continued from Page 16
role of a work coach is to prepare developmentally disabled individuals for their job. “We help them out for two weeks and get them ready. If we need to travel-train them, we will do that too, taking the bus with them and teaching them everything they need to know about using public transportation. Once they are good on their own, we check on them twice a month to see how they are doing, help them with new tasks and see how they are doing on their own.” At YACHAD/Jewish Union Foundation (JUF), the vocational services team teaches a wide array of skills to its members in an effort to help them succeed as employees, including work readiness, on-thejob and social-skills training, and offering both job placement and on-the- job support services. The JUF places members in a variety of fields, including schools, warehouses, restaurants, libraries, supermarkets, nursing homes and soup kitchens, and has partnered with both local businesses and agencies as well as big-name operations like CVS, T.J. Maxx and Staples. According to Yael Schochat, a job developer at the JUF, most of its members are currently occupied in meaningful pursuits, including volunteer experiences, internships and work opportunities. “Almost all of our clients are in-
eCycling program at Hasc Center
volved in some sort of work experience,” said Ms. Schochat. Devorah Lieberman, 29, was placed at the Foundation for Jewish Camp by the JUF. In addition to clerical duties, Devorah’s responsibilities include organizing the kitchen and the supply closet. Asked about her job, Devorah responded, “I love it!” Devorah enjoys spending time with her co-workers and, like anyone else, finds that nothing is as rewarding as receiving a paycheck with her name on it. “We are thrilled and excited to have Devorah working at the Foundation for Jewish Camp,” said Abby Knopp, vice president, Program and Strategy at Foundation
Creative Business Resources at work.
for Jewish Camp. “She has quickly become an asset to our organization and a part of our family. We look forward to a bright future with Devorah as a colleague, and enabling more young Jews to experience the power of Jewish camp.” Suri Englard, day services coordinator at HASC Center, estimates
her office currently has 50 consumers in the workforce, including Bracha*, who works at Canarsie’s Metro Center*. “I love it here,” enthused Bracha, whose official nameplate bears her current title, director of scanning services. “I do a lot of things: I lead meetings, I give out paychecks, and I scan delivery tickets.” Bracha’s boss, Isaac, fondly refers to Bracha, a nine-year employee who works 20-25 hours a week, as his “right-hand woman.” He considers her to be more than just a valued employee staff member. “Bracha isn’t just a good employee, she is family,” observed Isaac. “She knows my family, my kids. I just made a bar mitzvah and Bracha was there. There are 35 people in this company who care about her every day. If she ever doesn’t come for whatever reason, they come running up to me to make sure she is okay.” While Bracha takes a bus to work every day from her supportive apartment in Flatbush, fellow employees always make sure that in case of inclement weather, someone picks Bracha up and brings her to work. “Bracha started out at a much lower level but she has moved up as she has learned more and more,” added Mrs. Englard. “Bracha has earned everyone’s respect because she is a good employee. She is bright, willing to learn, and [is an] independent person.”
Bracha brown-bags her lunch, typically spending her midday break with friends who work nearby. “I cook the night before,” said the soon-to-be 34-year-old Bracha. “I cook healthy things.” According to Mrs. Englard, Bracha recently took on a commitment to a more healthful lifestyle and has lost a significant amount of weight. In addition to preparing her own meals, Bracha has been exercising on a regular basis at a local women’s health club. While it took some time to find the right employment opportunity for Bracha, once she hired on at Metro Center it became obvious that it was a match made in heaven. “We had Bracha at other jobs but we always knew she was destined for more,” said Bracha’s coach, Yisroel. “She has risen through the ranks and every few years they promote her again.” Yisroel recalls asking Bracha at one point if he could speak to her supervisor. “She looked at me and said, ‘I am the supervisor!’ ” Yisroel said. *Names have been changed for reasons of privacy.
Sandy Eller is a freelance writer who has written for websites, newspapers, magazines and numerous private clients in addition to having written song lyrics and scripts for several full-scale productions. She can be contacted at firstname.lastname@example.org.
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Deepening the Plot:
By Serena Wieder, Ph.D
Expanding Play and
Conversations with Your Child
lay has long been considered the “work” of childhood where children create ideas, have fun, practice roles, learn to negotiate and solve problems, and build empathy. Play is also where parents connect to their children as “play partners” to share ideas, communicate, follow their attention and interests, and pursue their feelings in order to build the foundations for a lifetime of connection and relationships. But play is not always automatic, especially for children with uneven development who need more support and practice attuned to their level and preferred modalities to build this foundation. Consider the following: “Moshe just runs off when I try to play with him. I buy the best toys but he just wants the same old thing. When I ask about school, all I get is a blank stare. Why can’t we just have a conversation?” These and many similar thoughts run through the mind of every parent who yearns to have the back and forth pleasure communicating and sharing ideas with their child. These are developmental capacities achieved through interaction. They are not taught, but supported through experience. To play or have longer talks, more time must be invested in doing so every day. Follow your child’s lead – this means joining in with his interests and helping him do what he wants to do. This can simply mean
handing him the blocks he is stacking and, when he trusts you, adding one yourself. This is building anticipation as the tower grows. Or, plead for a bite of his pretend food through gestures or words, and then trade your cookie for his ice cream. You can also pretend to run from the “Big Bad Wolf ” asking, “What does he want?” “Are we safe?” and wait for his answer. This is easier said than done! Perhaps your child turns his back, or runs off to find something else, or has no idea what a wolf wants. Maybe he doesn’t know how to initiate an idea or share his attention with you and the toy. Perhaps he doesn’t know what to do next. Or he doesn’t comprehend or is scared of the idea. The capacities for initiation, intention, problem solving, creating ideas and thinking logically require a developmental foundation built through interactive experiences. It is essential to understand that your child’s sensory-motor and visual-spatial processing might be undermining progress. Are there gaps in comprehension? Is he living in his own world? Does he have difficulty with motor planning? Can he find the things he needs? Can he regulate his attention or is he moving too much or too little? It is important to address these challenges. Most important is establishing the foundation for your relationships and interactions with your child. You know your child, so start with what he enjoys. Follow his lead, respond to what he does or woo him into what he loves, but be sure he reciprocates. If he likes being tickled, get him to tickle you back. You can also play hide and
seek. You are his first toy, and you need to try to keep it going as long as you can, opening and closing circles of communication. You want your child to have more fun being with you than playing by himself. If he moves onto something else, join him again or try staying on topic by handing back the toy, saying, “Oops, you forgot this!” The secret to sustaining interaction is “affect”: the cues you provide through your tone of voice, your facial expressions, your gestures and pacing of your words and movement. It may be as simple as saying, “Here I come…” and moving slowly, with your fingers outstretched, using your voice to build anticipation and waiting to capture your child’s attention. Or saying, “It’s so yummy!” as you savor his delicious food and gesture for more. You can also try, “Uh oh, look…it’s a dinosaur!” letting your voice convey fear as you raise your arms to demonstrate what we should do. Words are not necessary even for the verbal child. It is the affect that conveys the message of safety, approval, acceptance, and pride, or the opposite. Slow and quiet whispers work as well as louder excitement depending on your child’s arousal and regulation needs. The affect cues help your child understand the meaning behind your words and sustain his interest as you tap into his curiosity and discover playing together. When your child is already verbal and interested in symbolic (pretend) play or ideas, then you can deepen the plot. Ask questions as you dramatize a character in the story or discuss reflectively, but be careful not to ask too many ques-
tions! Use affect cues to express your feelings and to pursue his feelings. Agree or disagree with his reasoning and see if he can figure out why before telling him. One sample conversation might go as follows: “Was there a reason the pirate wanted to steal the treasure?” “He wants the gold and silver.” “What will he do with it?” “I don’t know!” “Would you give him your treasure (toy)? “No!” “Why not?” “It’s mine!” “How did you get it?” “Bubbi gave it to me” “Uh oh, do you think she stole it?” Keep stretching and encouraging your child’s imagination. See if he understands the concepts through your questions, but do not give him the answers. Encourage empathy by having him put himself in someone else’s shoes and feelings. Do not rush him and give lots of credit for good thinking! Don’t be surprised if the child wants to do the story again to master the emotions. Now you can make it more complex to deepen the plot. This takes practice. You can do this during playtime or talks before bedtime. Invest the time at every level of development. This article is derived from DIR/Floortime. Read more in The Child with Special Needs and Engaging Autism by Greenspan and Wieder, and Visual Spatial Portals to Thinking, Feeling and Movement by Wieder and Wachs. See www.Profectum.org or write to email@example.com Dr. Wieder is now practicing in NYC.
As you play or converse, check if you are: ✓ Changing the topic ✓ Asking too many questions or asking another question before getting a response ✓ Not waiting long enough for child to process what you said or retrieve words to respond ✓ Providing affect cues and gestures to convey meanings ✓ Spend an hour or t wo every day playing/conversing to lengthen the back and forth interactions
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Paul Stadler MS OTR\L NDT (INPP)
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APRIL 23–25, 2014 The New Yorker Hotel
KEYNOTE SPEAKERS DR. ROBERT C. PIANTA
(Fordham Award Recipient) Dean, Novartis Professor of Education, & Founding Director of the Center for Advanced Study of Teaching and Learning, Curry School of Education at the University of Virginia
DR. SERENA WIEDER Clinical Director, Profectum Foundation, Co-Developer of the DIR®/Floortime™ Model
DR. AMI KLIN Georgia Research Alliance Eminent Scholar Professor & Chief; Director of the Marcus Autism Center, Children’s Healthcare of Atlanta & Emory University School of Medicine
OVERVIEW Over 100 Speakers More than 80 Conference Sessions Full and Half-day Workshops 40 Exhibitors & Over 1,200 Attendees expected TOPICS
ADHD Autism Essentials Behavior Management Bullying
Developmental Discipline Early Literacy Emotional Intelligence Educational Policy
DR. EDWARD M. HALLOWELL Child and Adult Psychiatrist NY Times bestselling author, world renowned speaker, and leading authority in the field of ADHD; Founder of The Hallowell Centers in Boston & New York City
DR. CATHERINE LORD Director for the Center for Autism & the Developing Brain Weill Cornell Medical College NY Presbyterian Hospital
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The Young Child Expo & Conference will provide early childhood professionals and parents the latest information about early childhood development, services, resources, and products to help all children reach their full potential. In one unique event, this conference integrates learning about a wide variety of important topics affecting typically developing children as well as those with special needs, including autism.
Music and Learning Positive Parenting Social Skills Development Speech Language Issues . . . and many more To register go to:
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MICHELLE GIELAN Founder of the Institute for Applied Positive Research
” k c o n K , k c ” o ? n e r e “K h e T h t s ' g o n h i m “W o c l e e W v i : t D a i t i D n I W r P o O o , MA z D t a t .K n R c o r Fr By Ma “What is the Front Door?” “Why is this change being made?” “How does this new approach affect me and my child with special needs?” These are some of the questions asked by parents of children with special needs as they embark upon the tedious process of establishing their child’s eligibility for services from the NYS Office of People with Developmental Disabilities (OPWDD), which serves 126,000+ New Yorkers. With the right information and understanding of key Front Door concepts, parents will be able to use the front door to unlock the services their child so desperately needs.
What is the Front Door? OPWDD has redesigned how they offer services to individuals in order to promote greater awareness and choice for individuals and families, with a strong emphasis on self-direction, employment, and community integration. This is known as the Front Door initiative. The Front Door builds on the philosophy of person-centered planning, and the understanding that individuals with developmental disabilities have the right to enjoy meaningful relationships with others in their lives, experience personal growth, fully participate in their communities, and live in the home of their choice. The Front Door’s key components are: (A) eligibility determination (B) assessment (C) identification of service needs (D) service authorization and (E) implementation.
Who must go through the Front Door? Individuals who are seeking services for the first time or who are interested in modifying current services are the first to use this new process. 22
An individual is considered “new” to OPWDD if: Eligibility has not been established yet Eligibility has been established but one is requesting Medicaid Service Coordination (MSC) or has MSC and now requesting Waiver services for the first time Young adults who are transitioning from public or residential schools into the OPWDD adult service system
Why is this change being made? Prior to the Front Door, voluntary agency staff was responsible for conducting a formal assessment for those requesting services. However, service recipients typically receive a multitude of services from several OPWDD funded agencies resulting in several different assessments from various agencies. These different assessments on the same person often yielded discrepancies about one’s overall level of functioning. In fact, OPWDD recently initiated pilot studies across various regions in order to analyze this data, suspecting that there were service recipients who were under-supported or over-supported based on these inconsistent assessments. Changes are therefore being made to ensure that service recipients are provided appropriate supports that meet their actual needs in the most integrated, appropriate settings possible during these fiscally chal-
At A Glance: The Front Door Process Determine OPWDD Eligibility Attending a Front Door Session
Partaking in a Front Door/ DDP2 Assessment
OPWDD Authorization for agencies to render services
lenging times. Requests to access services that are very expensive and designed to support those with higher needs (e.g., day rehabilitation and supervised residences) now require a more careful review process than less intensive home-based supports prior to authorization. Although the previous assessment tool (DDP-2) is currently being used, it will soon change to a more standardized assessment tool (CAS) for reliability and validity purposes to better accomplish equitable access of services to all. It is also expected that OPWDD, rather than contracted agencies, will maintain responsibility of eligibility determination and assessment even for people with existing services as the system moves to a managed care model. Managed care entities (e.g., Developmental Disabilities Individual Support and Care Coordination Organizations - DISCO) will authorize services in the near future and will shift away from OPWDD’s fee for service model. The Front Door will help facilitate this transition and promote greater uniformity and accountability by being the sole assessment provider.
The Role of Parents during the Assessment Process A determination of a developmental disability is still the first step (Phase A) in securing OPWDD services. Your child must meet a Level of Care Eligibility Determination (LCED) which is determined by OPWDD’s local developmental disabilities regional offices (DDRO) based on one’s psychological evaluation, medical report, and psychosocial assessment. Once your child is deemed eligible for OPWDD services, family members are now encouraged to partake in an almost two hour “Front Door” information session at one of OPWDD’s regional offices. Familes may attend these sessions even before eligibility is determined and will find it helpful too. Please see side bar: Front Door Contact Information and Resources. In the back pages of this issue, you will find a resource directory that consists of various agencies which provide assistance with evaluations, intake, and referral of services. Upon completion of the two-hour training session, a DDP2 assessment is typically conducted via phone interview or in person with Intake Specialist, Individual/ Family, and OPWDD’s Front Door Access team member. While the response of your child is the determining factor during
Developing a Service Plan for Services
the IQ testing, parents still play an important role during the assessment process, and are the primary source of information for those making the Front Door assessment. Parents know their children best and provide information which supplements the clinical impressions of the professionals who have earlier interacted with them in testing sessions. Yaakov, a 4 year-old boy, was recently tested due to suspected global developmental delays. However, Yaakov’s father and mother were too embarrassed to indicate their son’s everyday weaknesses during the phone call/ Front Door assessment process. As a result, the testing results did not accurately reflect Yaakov’s daily functioning and did not give him access to the services he needed. This resulted in further delay and unnecessary testing to justify Yaakov’s eligibility for desperately needed services. It is important to note that the phone interview and assessment are intended to measure your child’s adaptive skills and typical behavior, not his/her behavior under ideal circumstances. While it is natural for parents to want to portray their child in the best light possible, in this case, it is in their child’s best interest that they not overestimate their child’s everyday abilities, but rather depict the child’s usual functioning level accurately. Regarding those who only or will soon receive Medicaid Service Coordination (MSC), the role of MSCs will evolve due to the Front Door process. MSCs are traditionally responsible for helping others explore what they want and need in life, and then assist them with getting it. Although MSCs are not part of the Front Door Team, they are involved during the assessment process, as they work in partnership with families to make informed choices (based on needs, interests, and desires) and further assist in OPWDD service planning and identification of services. See At A Glance: The Front Door Process, which serves as a snapshot. While the Front Door Process is still striving to streamline the way people learn about OPWDD services, there is no greater feeling of accomplishment for empowering parents than translating this rebranded approach into the reality of critical services enabling them to better cope with the demands of caring for a child with a disability. Marc R. Katz, an NYS Certified School Psychologist, is a Director at OHEL Children’s Home and Family Services. For more information about evaluations, intake, or referral of services, please call 1-800-603-OHEL, visit www.ohelfamily.org for live help online, or e-mail firstname.lastname@example.org. OHEL delivers a breadth of community and residential services through OHEL Bais Ezra, OHEL Lifetime Care, OHEL Foster Care, OHEL Mental Health Services, OHEL Institute for Training, Camp Kaylie, and Etta at OHEL.
FRONT DOOR CONTACT INFORMATION & RESOURCES Eligibility coordinators can be contacted for scheduling informational sessions at http://www.opwdd.ny.gov/welcome-front-door/Front_Door_Contact_Numbers. The Front Door’s resource booklet and curriculum handouts are available at http://www3.opwdd.ny.gov/wp/wp_catalogy0109.jsp (as these resource materials are not usually given at these sessions.) A comprehensive resource guide to locate testing services can be found at http://www.opwdd.ny.gov/wt/forms/wt_guide_to_eligibility_assessment_resources_final.pdf. March 2014
DisneyWorld’s New Disability Regulations: Not That Helpful
By Elisheva Stein
e have traveled to Disney World several times with our son, Isaac, who is multiply disabled. He enjoys it tremendously. His first trip there was granted by a wish foundation, and he loves going so much that we have made it a priority to bring him back. There are four parks at Disney World with many rides and shows throughout the parks. In addition, there are certain areas set aside for the opportunity to meet with the Disney characters such as Mickey Mouse. In general, there are many obstacles when attending these parks with a disability. Some of these obstacles are the weather, medical schedules in the case of someone who is ill, or long waits for children with cognitive impairment. For example, Isaac has many medical needs. He is fed by a feeding tube, receives multiple medications throughout the day, needs to be suctioned and get respiratory treatments, and have his toileting needs cared for while lying down. In addition, due to all these needs, it takes a long time to get ready in the morning and it is quite often hours before we get to the park, leaving us with fewer hours per vacation day than most people have to enjoy everything. If you are traveling to Disney with a wish foundation, you get a pass which allows you to access the attractions easily without having to wait in line. When we started going there without those 24
organizations, we used to go to guest relations and obtain another kind of pass which allowed Isaac the same access. On occasion, we would be given a hard time by one of the workers at an individual attraction, but usually we would be able to go to the front of the line, so that Isaac did not have to wait. In October of 2013, Disney came out with new regulations for people with disabilities. From their website: Disney Parks is modifying the current Guest Assistance Card program, which provides access to attractions for guests with disabilities…. The new program… will also help control abuse that was, unfortunately, widespread and growing at an alarming rate. The new Disability Access Service (DAS) Card will allow Guests with disabilities at Walt Disney World Resort and Disneyland Resort to receive a return time for attractions based on the current wait time. Guest Relations at the front of each park will continue to assist Guests and provide assistance that is responsive to their unique circumstances. As soon as the Guest finishes one attraction, they can receive a return time for another. This service can be used in addition to Disney’s FASTPASS Service and Disney FastPass+ service. Disney Parks will continue…to work individually with guests with disabilities to provide assistance that is responsive to their
unique circumstances. Guests should visit Guest Relations to discuss their individual needs. Unfortunately, Disney has not thought this new service out completely and did not take all types of disabilities into account when creating this new Assistance Card Program. With a child like Isaac, attending to all of his needs requires a lot of time. Therefore, it is next to impossible to go to an attraction, receive a time to come back, and find something else to do for 20 minutes. Attending to his needs usually takes longer than that. It is also usually pretty hot outside, or sometimes it is raining, and there isn’t any place to be inside near the attractions except restaurants. When you keep kosher, this is an additional restriction. This past November, we were able to take Isaac to Disney World again. He has been extremely sick for the last 7 months and it was a miracle for us to get him there. He was on oxygen 24/7 and needed constant help to maintain his breathing and wellbeing. It was very difficult for us to travel there with him, but we did it to make him happy no matter what.
Unfortunately, it became increasingly difficult once we arrived at the parks. The Disney website states that they will make accommodations per individual need. However, when we went to the guest relations at Magic Kingdom, they did not help us or make any special accommodations based on Isaac’s needs. I spoke directly with someone at city hall in Magic Kingdom and was told these are their new regulations and we had to follow them. They told us to use the new disability card and be given a time to come back for each attraction. You are not allowed to get wait times for more than one attraction at a time, making it take almost as long as waiting on the regular line. Disney still has not worked out all the kinks in their new system. Even though they were adamant that we had to follow their guidelines, we asked at the different attractions if they could help us by letting us go right in. Many of the individual workers were kind enough to let us do that, especially considering Isaac was on oxygen, but it was at their discretion. Unfortunately, quite often we were not allowed to go ahead in the line and
ended up having to wait to see special characters or go on a ride. If they hadn’t let us do that, we would have had to have gotten a time to come back to a ride or show, then go to do something else to kill time. Meanwhile, we couldn’t get to a facility to attend Isaac’s toileting needs in that time (quite often we do this at the First Aid station which is a distance from most of the attractions) or even change his oxygen tank. This is very different than being with a wish organization or the way it was in the past, where we could just go up to the ride or show when we were ready and be escorted right in. …a Guest whose disability is based on the necessity to use a wheelchair or scooter does not need a DAS Card. Depending on the attraction, the Guest will either wait in the standard queue or receive a return time at the attraction based on the current wait time. For some attractions at Disneyland Resort, these guests will go directly to an alternate entrance. This means that anyone in a wheelchair cannot expect to get special treatment at the attractions unless they obtain a disability pass. They would need to wait in line like everybody else. This actually benefits us, as many people rent a power wheelchair (ECV) when they are there but do not have to prove the need for it. Then, if they are driving the power chair they take advantage of it and go in the disability entrance. We often find that people who do this rent it because it’s difficult to walk the large distances in the parks, but otherwise they would be fine walking. We have had first-hand experi-
ence with this “cheating the system”. Disney has special areas set aside for people with disabilities to watch the parades. Anyone who rents an ECV can use this as well. We were once at this spot when somebody parked their ECV, got up, walked away and went shopping. They then came back and had their better viewing spot at the parade. Disney workers are not allowed to say or do anything about this. It happens often, so I’m glad they changed the rules to ensure that only people who truly need it can get a disability pass. However, their system is still flawed and must be worked on so that children like Isaac and many others with all types of special needs can truly enjoy their time at Disney World. Elisheva Stein is mom to three wonderful children. Isaac has many needs and challenges and continues to amaze her.
Wandering Children: How to Protect Children with Autism By Leah Rothstein
hen my son was 8, he left the house by himself in the middle of the night.” Nechama knew her son Shalom, who has autism, sometimes had difficulty sleeping, but usually when he woke during the night he’d go downstairs by himself and play on the computer. On this particular night, the computer’s password was locked, so he got the back door open and wandered out of the house all by himself. She only found out when a neighbor called and woke her up, saying, “Shalom left your house, and the cops are knocking at your door.” The police had brought him home safely after he’d wandered around the neighborhood and woken up many neighbors, banging on different doors. Once she had him back, she grabbed him and fell on the couch, crying hysterically. She still gets emotional when remembering that night. “I aged ten years from that one event. It’s really a trauma.” But what could she do to prevent a recurrence? “The neighbors ask me, can’t you just lock your doors from the inside? Yes, but it’s a fire hazard- a real catch-22. So as a compromise, the next day we got two-way locks on the doors and keep the key within adult reach near the doors.” Shalom hasn’t wandered since then, but his mother says that “hearing the stories in the news keeps the worry frequently on my mind.” One of the stories that has attracted the most attention in recent months is the tragic events surrounding the disappearance of Avonte Oquendo. Avonte walked out of his school through an open door on Oct. 4, 26
2013 and disappeared, triggering an intensive search all over New York City. It remains a topic for debate if his school is culpable for how he was able to get out, and whether they responded quickly enough. Unfortunately, despite his family’s desperate hopes, Avonte’s remains were found in the East River in January and ID’d with DNA testing. At the end of February, after a battery of tests, the city medical examiner’s office announced that the cause of death was undetermined. Avonte’s case inspired Sena-
tor Charles Schumer to propose ‘Avonte’s Law’ to protect other children with autism by designating $10 million of federal funding to pay for GPS trackers for them. Modeled off a similar program for people with Alzheimer’s, funding will go to police departments to choose and purchase such devices. What makes wandering a problem serious enough to take such action? Don’t many young children tend to wander off? But for children with autism, such incidents can be much more
serious. 49% of children with autism are at risk of wandering, four times higher than siblings without autism. More than a third are nonverbal to the point where they cannot communicate their name, address, or phone number. More specifically, the National Autism Association defines wandering as follows: “When a person, who requires some level of supervision to be safe, leaves a supervised, safe space and/or the care of a responsible person and is exposed to potential dan-
ABOUT TRACKING DEVICES Choosing a tracking device can be overwhelming. Each type of device has its pros and cons. GPS-based trackers can cost over $100 plus monthly cell/satellite service fees, plus the signal can be interrupted if the child goes underground. Radio signal devices are cheaper, down to as little as $10 plus batteries, but they can only signal distance and not pinpoint a location like GPS. LoJack’s SafetyNet bracelet uses radio signals to alert public safety professionals, and is often used for children with autism or Alzheimer’s patients. AmberAlertGPS is a device children can wear on a necklace chain and parents can check their location anytime from a mobile app. It sends alerts if children walk past the boundary of designated “safe zones,” and has two-way calling with the press of a button. Project Lifesaver’s PAL (Protect and Locate) device looks like a watch but uses GPS to alert a caregiver if they leave their perimeter. eZoom, a GPS tracker made by Securus, can be placed on a child’s belt loop. Buddytag, runs on Bluetooth technology and connects children’s wristbands with parents’ smartphones. A child leaving the phone’s proximity triggers an alarm, especially useful for crowded open spaces or wandering in a mall. If the signal gets lost, it emails the child’s last known location, which gives a direction to start the search. The wristband also has a panic button for kid to press if they know they are lost.
Project Lifesaver Pal
Amber Alert GPS
gers such as traffic, open water (drowning), falling from a high place, weather (hypothermia, heat stroke, dehydration) or unintended encounters with potentially predatory strangers.” There are several types of wandering: Goal-directed wandering has a purpose: to get to something, like a favorite store, or a place of obsession like a body of water. (Many children with autism are drawn to water, which is an added danger for wandering and the cause of 91% of wandering-related deaths in 20092011.) Bolting is a sudden response to a negative stimulus and an attempt to get away, without a specific goal in mind. Other types of wandering are due to disorientation, boredom, confusion, or just getting lost. Be proactive! There are many options for parents and caregivers who want to protect children at risk. Some are simple and basic, while others utilize the latest high-tech devices. To start off, take whatever lowtech steps will secure your child’s environment and decrease the opportunities for wandering. For example, get specialized locks on the doors and high fences in the backyard that will not compromise safety. Make sure siblings and guests always immediately lock the outside door after themselves. Introduce your child to all the neighbors and local shopkeepers so they will be recognized on sight if they wander from home. Write out a plan of action of what steps you need to take in case your child wanders. It should include likely locations to check, contact numbers for the police, missingchild hotlines, and friends willing to help search in case of emergency. You should distribute it to all relevant family members, teachers, neighbors and even local shopkeepers. You can download templates to guide you at http://nationalautismassociation.org/docs/BigRedSafetyToolkit.pdf. Training the child him/herself is a key step whenever possible, but children at different points on the autism spectrum have different levels of functioning. For those who can speak, you can teach them to repeat their phone number and address if they get lost, but even for those who can’t communicate, Julie Young, a behavior analyst who works with children on the autistic
spectrum, suggests a temporary tattoo with the parents’ contact information. Swimming lessons are extremely important, if the child is willing to try it. They should practice swimming when fully clothed as well. Even if the child becomes a competent swimmer, one should never rely on their abilities and always block access to pools and other bodies of water unless under close supervision. Mrs. Chana Tomsky received a safety book from Ohel that she reads every day with her son, who has autism. She shows him pictures and repeats messages like, “don’t run outside, don’t cross the street without adults, don’t leave the house by yourself.” Nonverbal children like Tomsky’s can’t explain why they run, but whenever possible you should try to recognize and identify triggers for wandering. Some children will wander at certain times, like at night, or when they pass a store with their favorite movie characters in the display window, so parents can be especially on their guard in those situations. Jason Bolton, the VP of Children and Family Programs at the Exceptional Children’s Foundation in LA, says, “It’s important for parents and caregivers to realize that wandering can occur in ANY environment and even when well-designed supervision plans are in place. While alert supervision still remains the best prevention for poor outcomes, families and others providing care, including schools, should consider taking other important proactive measures.” Some children have sensory sensitivities that make them uncomfortable when a wristband or anklet touches their skin, so they might take it off. Parents need to make sure the child will keep the device on and are comfortable. (Comment: since it’s not legal, I would remove this sentence).
As the mother of a son with autism, Chana Tomsky has a message to share with the public: don’t be so quick to judge what you don’t understand. “People jump to conclusions about parents, and schools. In reality, there’s only so much you can do.” Parents can’t stay up all night, they can’t watch their child every second, and they have other responsibilities and other children to take care of. “Many people assume that if your children wander, it means you weren’t taking proper care of your children,” Tomsky complains. “Even policemen have spoken to me accusingly when I reported that my son had wandered. As if I wanted him to! My kids are my number one priority and I have help from Ohel. Despite that, my son has run away several times. I’m one person and he’s fast and very smart and knows how to get away if he really wants to. He’s even run out of the back of the school bus while the driver was watching other kids getting off at the front.” She can’t leave him indoors all the time, either. “We take him out to the park, he needs to go out and have activities, too. I take precautions, but it’s scary knowing that after a one time mistake it could already be too late.” Awareness of this problem is growing, especially after high-profile cases like Oquendo’s, and many individuals are putting together registries of children at risk, creating devices that can help, and being supportive of parents who are struggling. The latest advances in technology, financial support for those who can’t afford tracking devices, and help from neighbors and friends can make a big difference in the lives of parents trying to protect their children. Leah Rothstein lives in Elizabeth, NJ and is a frequent contributor to The Jewish Press and Building Blocks Magazine. She is also the director of marketing and operations for www.jewinthecity.com.She is also the director of marketing and operations for www. jewinthecity.com.
One of the best collections of resources and information is http://www.autismspeaks.org/wandering-resources More resources are available at http://www.awaare.org/ Autism Emergency Contact form, to distribute to neighbors http://nationalautismassociation.org/docs/BigRedSafetyToolkit.pdf Tools mentioned in the article http://www.amberalertgps.com/ http://www.projectlifesaver.org/Pal-info/about-pal/ www.lojack.com/People-at-Risk http://www.mybuddytag.com/ https://www.securusgps.com/eZoomGPSforChildren.aspx March 2014
Occupational Therapy (OT): An overall therapy that is geared towards helping your child be successful by giving them the tools they need By Mori Sokal
s parents, we worry about our children all the time, often before they are even born. It is important to trust our instincts regarding our child’s health and development. We may suspect something is wrong before others notice, or we may be told by a doctor or a teacher. If we did not notice something ‘off ’ with our child, we may need to trust a professional, who is able to compare our child to a wide spectrum of his peers. As Rachel*, a mother of five children who each have their own special needs said, she did THE ABC’S of OT (and other therapies) AOTA - American Occupational Therapy Association EI - Early Intervention IDEA – Individuals with Disabilities Education Act IEP- Individualized Education Plan IFSP - Individual Family Service Plan LRE - Least Restrictive Environment OT - Occupational Therapy PT -Physical Therapy 28
not even know there was something ‘wrong’ with her older children until the third came along, and he was ahead of the older ones in some areas. Therefore, it is important to listen to doctors who have concerns about our child’s development, or teachers, or even friends who may notice something “off ”. However, Rachel says, it is most important to listen to ourselves. “If you have a hunch, act on it. Don’t be afraid to ask (questions) if you think your child is different…. you can get resources to help your child succeed.” If you feel concerned, the first step is noting your child’s difficulties with certain activities, such as walking properly, difficulty coloring or holding scissors, or riding a bike. Next, talk to your pediatrician, whose help you may need to access services. You can request that your child be evaluated to determine his needs and eligibility for services. Your child will then be referred for a primary evaluation, which tests your child in order to determine which therapies, if any, he needs. Your child may need more than one kind of therapy.
Editor’s Note: Building Blocks magazine is a resource for parents of children with special needs. As there are many kinds of special needs, as well as many different therapies which help our children, we will be including a running section on several different therapies and treatments. This will be a comprehensive overview of what the therapies are, who can benefit from them, and how parents can best utilize the therapy to help their children. It can be scary when we are told “Your child needs this,” without fully understanding what it is, and how it can help our children. It is even more difficult when those in the field throw initials or lingo at us and expect parents who are new to all this to understand, or to pick it up along the way. Parents do not need to be nervous or embarrassed to ask, but it is easy to pick up a vibe that the parent should know, even if that was unintended by the therapist. Therefore, this article aims to demystify some of the lingo and to remind parents that they are the most important part of the team that will be formed to help their child. We are starting with the basic herapies and will have some alternative therapies as well. The first area we are featuring is Occupational Therapy.
What is Occupational Therapy and who needs it? According to the AOTA (American Occupational Therapy Association), that which keeps us busy is our occupation, so if we need help with it, we need OT. For a child, that means basic development, such as eating, walking, dressing, and coloring/writing, as well as social skills like talking and relating to others. According to Riki Goldberg, a New Jersey home-based EI therapist, a child may get services based on need without being diagnosed. One child may have symptoms and be treated and be discharged, while others may be referred to OT for sensory issues and then it’s discovered that the child is on the autistic spectrum or has another diagnosis. [Sensory issues (minimal definition) are when the child has specific problems eating certain foods because of their texture/feeling, or wearing clothing that irritates them.]
The Evaluation Process According to Yarona Boster, program manager of the Arc of Essex County Shapiro Center EI program, NJ parents can contact the state 800 number, and will receive a telephone and then home evaluation, made by a multi-discipline team. The team will determine which therapies to implement, the frequency, and short and longterm goals based on the child’s requirements. You can find further information on NJEIS.org.
Once the state and the insurance companies approve your child for therapy, you are on the way. It is important to remember that, although labeling may be seen as undesirable, it is vital to getting your child the help they deserve, as per the law: “The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities.” (http://idea.ed.gov/). If your child’s developmental issues or disabilities are not obvious, you may want to discuss your child’s issues with his teacher so that he gets what he needs in order to progress. You can choose which professional to share your child’s diagnosis with as you deem appropriate.
EI (Early Intervention) In many states, EI services are available in your home. This is for birth to three years. A therapist will be assigned to you and will work out a goal sheet. This is known as an Individual Family Service Plan, or IFSP. The therapist will recommend goals for the child with input from the family. Then the therapist will work towards those goals during every service visit, and will make notes as to what is working and how the child is progressing. Riki says that one unique aspect of working in the child’s home environment is that “…you become part of the family’s life.” She understands when families may have difficulty doing follow up. That said, as a parent, the best part of home-based therapy is that you are involved, and can be a pivotal part of changing your child’s future by doing the recommended follow-up activities.
Ask questions; the therapist is there to help you help your child. After EI, some children are ready to be discharged and still others move on to CPSE (Committee on Preschool Special Education)/ school based interventions.
Ages 3 and up This age is when the IEP, or Individualized Education Plan, begins. If your child was not discharged from EI service, they will continue receiving therapies through school, or until a reevaluation determines that they no longer need services. The child may be evaluated as early as 6 months before he turns three. The parents should be involved in the IEP meeting to determine which goals need to be worked on in order to help the child. This applies to all therapies. The teacher will have to meet these goals as well, and take notes on progress. According to Peggy Gurock, a New Jersey school-based therapist who heads the Orthodox Association of OTs, the primary goal of OT is access. Peggy says that she became an OT because she likes to see children achieve and go on with life. The end goal of therapy is to “help the child be as functional as they can in their environment.” Therefore, although Peggy works with children and teens who may not be seen as “typical”, her work enables them to function as contributing, independent members of society. She says that OT is as basic as helping a child with motor issues learn how to eat or tie their shoes, or just getting them the right desk that will allow them to mainstream into a regular classroom. Peggy also points out, however, that OT “is a limited fix…to try to get the child to their optimal level.” In other words, there may come a point where you are told this is the most that can be done to help your child integrate. A basic tenet of IDEA is to get every child to be able to learn in his own Least Restrictive Environment (LRE). That means that if a child has sensory issues such as extreme sensitivity to sound, he may need the classroom desks to have tennis balls guarding the feet to reduce the noise level. That is part of an OT’s job. However, the OT who is coming to your house may be trying to help your child eat that food they hate due to sensory issues.
Riki says one of her great pleasures as an OT is seeing the child finally eat that food. Rina Shteren is a therapist who works both in school and a private clinic. She says that working in a school environment is hard work and you need to put a lot of your soul into the job, but she loves it. In school, Rina works with small groups of 1-5 students who have social and emotional issues. Her primary concern is getting the students the skills they need to function better in all their environments. These include learning how to act in a social setting as well as a classroom, and improving self-esteem. There are also classic OT physical tools that Rina obtains for her students such as special writing tools, desks, or whatever they may need in order to succeed in learning. Dena Lehrman, an OT who works privately in Israel, says most children’s issues are noticed primarily when they get to kindergarten. The child may have difficulty writing, using scissors, or walking. This can be a motor-planning problem, and we should not dismiss it as clumsiness. Dena says most cases do improve with therapy, but also the younger they start, the earlier they will get integrated into a regular classroom. She says, “OT is about functional goals. For a three year old, getting himself dressed is important, as
What is Occupational Therapy, and how would I know if my child needs it? When you look up Occupational Therapy online, you get a host of definitions. Even when speaking to therapists, you may find that it is the most complicated therapy to properly explain. As one therapist says, “The hardest part about being an OT is explaining what you do.” AOTA writes most clearly about who would need Occupational Therapy, explaining that an occupation is what we do all day, what we are occupied with (see link 1). This means play and development for a child, parenting and working for an adult, and living as independently as possible for an elderly person. Therefore, if we are hindered in any way, we may need OT at any stage in or lives. Our focus here is child development issues. We will discuss both Early Intervention (EI) and school-based therapies. From the American Occupational Therapy Association(AOTA) What is Occupational Therapy? “In its simplest terms, occupational therapists and occupational therapy assistants help people across the lifespan participate in the things they want and need to do through the therapeutic use of everyday activities (occupations).” - See more at: http://www.aota.org/en/About-Occupational-Therapy. Some of the definitions include the following: From the Buereau of Labor Statistics: Occupational therapists treat injured, ill, or disabled patients through the therapeutic use of everyday activities. daily activities, from home to school to socialization. One thing all the therapists interviewed say is that they most enjoy the way they need to be creative in order to individualize the therapy. If one way of therapy isn’t working for your child, ask the therapist to come up with other options—or make your own suggestions! Rachel relates how her son was thought to be simply uncoordinat-
Occupational therapy can help improve kids’ cognitive, physical, and motor skills and enhance their self-esteem and sense of accomplishment.
From kidshealth.org well as eating and playing. Older ed. He walked into things, couldn’t children need to be able to start ride a bike, and had many bruises and finish a project, which leads and scars from what seemed like to a real sense of accomplishment. inattention. When he got to first She adds that the exciting part of grade in a new community, the OT for her is seeing the child de- teacher noticed differences bevelop that inner voice of “I can do tween him and his peers and sugit.” Dena stresses that the therapist gested evaluation. During testis not there to replace the parents, ing, Rachel needed to correct the but to facilitate, and that the thera- evaluator’s misconceptions about her son. Once she corrected these, pist wants the parents involved. OT is no longer just about the process went more smoothly specific skill development but toward finding the right diagnosis about the integration of the and the right therapy, which inskills into all arenas of the child’s cluded medication, OT, and also
vision therapy. When he was retested in seventh grade, another misunderstanding occurred which led to an incorrect diagnosis of depression. In the end, the doctors agreed that the issue was his communication skills. This shows that it is up to us as parents to be our child’s loudest advocates, no matter what we may be told. Today, Rachel’s son is in a high level technology/engineering program, and is extremely social; he can have a conversation with anyone. This is due to Rachel getting her children the resources and help they needed to succeed through the correct therapies. Occupational therapy is a vital tool used to help children develop appropriately and learn the skills they need to maintain daily living activities and an occupation as they grow. *name was changed Links to articles: http://www.aota.org/-/media/Corporate/Files/AboutAOTA/Centennial/Brand/Toolbox/ Brand-Material/What-Is-OT-brochure.pdf What is the Difference between an IFSP and an IEP? http:// www.pacer.org/parent/php/PHPc59.pdf Mori Sokal has a Master’s degree in Early Childhood and Special Education. She taught in America for five years, and has tenure in the New York City Public Schools. She currently lives and teaches in Israel, where she works with both regular and Special Needs students. March 2014
s In t h g i s n I
By Rachel Wizenfeld
ourette Syndrome, or Tourette’s, in which a person exhibits involuntary, repetitive movements, or tics, affects as many as 1 in 100 Americans. Some tics, such as eye blinking or throat clearing, are more mild, while others can be quite severe and noticeable. In order to have an official diagnosis, a person needs to have both vocal and motor tics that have been present for at least a year. Tics usually have a waxing and waning cycle, so many kids will have months that are worse with tics and months that are better, according to Jeremy Lichtman, a doctoral student at the Rutgers University Tourette Syndrome program. Emotional states, like anxiety or stress, can worsen tics. Tics are usually apparent from birth in people with Tourette’s, but most parents don’t pick up on them until at least ages 4 or 5 or later; the most common age for diagnosis is 8 years old. The symptoms get worse with puberty – from ages 1114 is usually when Tourette’s hits its peak of highest intensity. Some of the more common tics include high levels of blinking, head shaking, some arm movements and shoulder shrugging. Common vocal tics include sniffing, grunting and squeaking-type noises. Simple tics are more common, such as thrusting the arm out or shaking the head. A complex motor tic can look more purposeful and orchestrated, and it might have multiple components, such as lifting the left shoulder, extending it out and moving it in a circle. People with Tourette’s often 30
describe a tic as a feeling like an intense urge, such as a need to scratch, and a need to fulfill that urge, whether it’s hunching one’s shoulders or sniffing. More often than not Tourette’s comes with a dual diagnosis: 50% of sufferers have ADHD, while 30% have OCD, according to Lichtman. This can complicate things, as a child with ADHD may be less likely to respond to certain behavioral treatments for Tourette’s (see sidebar). And ADHD and high functioning autism, another common dual diagnosis with Tourette’s, can exacerbate the social issues that are already present from having Tourette’s. What causes the syndrome is not really known. It’s a neurological condition with some strong genetic links, said Lichtman. Parents with the gene have about a 50% chance of passing it onto their children, and boys with the gene are three to four times more likely to develop Tourette’s. Other links, risk factors and causes are still being investigated. It’s a complex syndrome, likely caused by a combination of genetic and environmental factors.
One Family’s Struggle with Tourette’s Syndrome One New York-based mother talks honestly about her family’s struggle with her son’s sudden onset of Tourette’s. “It’s so, so hard,” she says. “My son had tics since he was a
baby, but we didn’t realize it. Then one summer he went off to camp, and all of a sudden when he came back he had such a massive amount of tics – flapping his arms, shrugging his shoulders…it was like it happened overnight. Now, looking back, we realized that he had had minor tics since he was a baby. I asked my son if he can tell me what it feels like, and he says it’s like an itch that you have to scratch. I was told it’s typical, that around ages 8,9 and 10 is when Tourette’s usually appears. But it’s so terrible for him and for us. All of a sudden you take a kid who’s so high functioning, so smart, and the tics took over his life! We worked so hard with him to help him be typical acting – he also has Asperger’s. We dressed him well so he would fit in with his friends, helped him become good at sports, and all of a sudden he took a nosedive down. We’re trying to find a medication that works. But these medications have very bad side effects. With one medication, he was always tired and spaced out, and it made him stand very statuesque. I stopped it and now am waiting for the doctor to get back to me. As much as the doctors know, it’s really trial and error. It’s a frustrating road to climb. Also, there’s the question of whether to medicate or not. You don’t really want to medicate – it’s playing with the chemicals in your brain, which is scary. But we want him to be normal. We’re really not sure of what we’re doing. It’s very embarrassing to the other kids in our family. A lot of them
were in tears when this happened. I have to do a lot of reassuring. He’s going to be what he’s going to be, and we have to give him the best shot possible. This is what he was given, and we’ll make the best of it. But it’s embarrassing when we’re in public and it’s so obvious. We go to the library and people say, “Sh, sh” [while he has his vocal tics]. There’s a lot of running to doctors, and a lot of the doctors don’t take insurances. Thank G-d I found a neurologist and a motor specialist that take my insurance. There are a lot of trips back and forth, fussing with medications, changing dosages and then running out of medication before you’re up for a refill. There are a lot of pieces to the puzzle.”
Treatment Options There’s no clear treatment for Tourette’s. Antihypertensive drugs, originally developed to treat high blood pressure, are often the first drugs used to treat tics, due to their milder side effects when compared with neuroleptic, or antipsychotic drugs, which are also used to treat Tourette’s, but which can have more severe side effects, including a dulling of cognitive ability or increasing risk factors for other diseases. SSRIs (selective serotonin reuptake inhibitors) or medications for ADHD such as Ritalin may be used for behavioral or emotional support in people with Tourette’s. There is also evidence supporting the use of cognitive behavioral
therapy for those afflicted by Tourette’s. Called habit reversal, the treatment involves teaching the child or adult to self-monitor and recognize when a tic is coming on, and then instead of doing the tic, do another behavior that actually interferes with the tic movement and is social acceptable, said Jeremy Lichtman, a doctoral student at the Rutgers University Tourette
Syndrome program. Called a competing response, this alternate action is meant to relieve the urge that precedes tics without performing the actual tic. Results are promising: in a 2012 study published in the Archives of General Psychiatry, researchers reported 38 percent of patients receiving cognitive behavioral intervention for tics (CBIT) showed
Breaking it Down ☞ A neurological disorder ☞ Characterized by repetitive, stereotyped, involuntary movements ☞ Named after Dr. George Gilles de la Tourette – the first neurologist to describe the condition.
2 Types of Tics ☞ Motor Tics – movements of the body that are difficult to control. Examples are: ☛ Eye blinking, shoulder shrugging, arm jerking, hand or finger flicking ☞ Vocal Tics – Sounds that a person makes with his or her mouth or voice Examples are: ☛ Humming, throat clearing, yelling or words or phrases, lip smacking, tongue clicking
Simple Vs. Complex Tics ☞ Simple Tics ☛ Sudden, brief, repetitive movements involving only a few muscle groups and only one or a few parts of the body ☛ Common simple tics can include; Eye squinting, blinking, facial grimacing, shrugging, sniffing, head or shoulder jerking. ☛ Simple vocal tics may include repetitive throat clearing, coughing, snorting, grunting or barking. ☞ Complex Tics – are distinct and coordinated patterns of movements involving several muscle groups. i.e. facial grimacing and throat clearing combined with a head twist and shoulder shrug. ☛ These Tics may appear purposeful, such as touching objects, jumping, twisting and sniffing. ☛ They may include saying or yelling words or phrases. ☛ Some tics can include patterns that result in self harm. i.e. punching oneself in the face, head, etc. ☛ Coprolalia – a vocal tic where the individual utters words or saying that are socially inappropriate such as swearing (only present in 10-15 % of individuals with TS).
Symptoms: ☞ The main symptom of TS are tics ☞ Tics typically worsen during times of stress, anxiety, or excitement, and tend to improve when they are calm or focused on an activity.
Age of Onset ☞ Typically begins in children 3-10 yrs of age ☞ Many parents say their child had a tic earlier on, but it went unrecognized as a Tourettes tic till other tics developed. ☞ Some individual’s symptoms worsen by early adolescence and can improve or disappear by late teens into adulthood.
significant symptom improvement compared to 6 percent receiving the control treatment. Lichtman has seen success himself using CBIT for Tourette’s, but he said the treatment can be tough for children with ADHD – as many as 50% of people with Tourette’s have ADHD – since it requires focus. Tourette’s is a hard disease which affects everyone in the family, how-
ever most individuals can be contributing members of society and go on to lead a fulfilling life. According to the NY mom- “though it’s not always easy to raise with a child with TS, I wouldn’t trade him for the world. He may not be like your son but that’s what makes him mine”. Rachel Wizenfeld is a frequent contributor to many Jewish publications. She lives with her family in Los Angeles.
Course of TS: ☞ Motor tics usually proceed vocal tics ☞ Simple tics proceed vocal tics ☞ Tics typically begin in the head and neck and may spread to the trunk and extremities. ☞ Tics can come and go over time and vary in type, frequency and severity. ☞ Tics can also change, appear, disappear and reappear over time.
Other facts about Tourettes Syndrome ☞ TS is a chronic disorder. ☞ Everyone’s experience with TS varies. ☞ For many people with TS, tics do not interfere in their everyday lives. For others it can have a profound effect on them and their families. ☞ Tics may not go away during sleep, but they may decrease.
Diagnosis of Tourettes Syndrome: ☞ There are no diagnostic tests (i.e. blood, laboratory, or imaging tests) to diagnose TS ☞ Doctors use guidelines to diagnose TS ☞ To be diagnosed with TS one must have: ☛ Motor and vocal tics ☛ Symptoms must be present for at least one year
Treatments ☞ There is no known cure for TS ☞ There are medications to control the tics ☞ Behavioral treatments are available, such as awareness training, cognitive behavioral training, and biofeedback. Opinions vary on their effectiveness.
Co-Morbid (Dual Diagnosis) Factors: ☞ Among children diagnosed with TS 79% have a dual diagnosis of at least one mental health, behavioral or developmental condition. Some of these conditions are: ☛ Obsessive compulsive disorder (OCD) - comes along with intrusive thoughts, behaviors, and ritualistic behaviors. ☛ Attention Deficit Hyperactivity Disorder (ADHD) ☛ Depression ☛ Anxiety disorder
Risk Factors and Causes: ☞ No known exact cause of TS ☞ Current research speculates its cause as an abnormality in specific parts of the brain (basal ganglia, frontal lobes, and cortex) ☞ Other research suggests it is caused by the neurotransmitters such as Dopamine, Serotonin, and norepinephrine. ☞ Research suggests that it is an inherited/genetic condition that is passed from parent to child through the genes.
Prevelence: ☞ 3 of every 1000 children ages 6-17 yrs ☞ Affects all racial and ethnic groups ☞ Males are affected 3-4x more than females.
☞ In the US, 200 people have the most severe form and 1 in 100 have a milder, less complex form. March 2014
By Ilene Chaya Klass and Juby Shapiro
Dealing with Meltdowns I
have a nine year old child with Autism, who appears as a typical child to someone who doesn’t know he has a disability. On a recent visit to a local shoe store, my child had a meltdown. After a short time, I was asked by the storeowner to leave, because he claimed that my child was making the other customers uncomfortable. People in the store stared at me, rolled their eyes and sighed. I left the store feeling humiliated like I was the world’s worst mother. It was a very traumatic experience not only for me and my child with special needs, but for my other children as well who were with me at the time. What can I do differently to avoid such a situation like this in the future? Firstly, I thank you for sharing your personal story with us. Though this was a humiliating and upsetting experience for you it is very commendable that you are trying to channel that pain into a learning experience. To address your question, let’s examine all the players in this scenario. There is the store owner, the other customers, yourself, your child with special needs, and the siblings.
What could the store owner have done differently?
❄ If your child was truly making the other customers uncomfortable he could have serviced your child first. 32
❄ He could have offered to make an appointment at opening or just before closing, where your child would not have to deal with crowds. He could also advise you when he thinks the store is less likely to be crowded. ❄ He could have taken your phone number to call you to come back when it was your turn so you could remove your child from the stressful situation and calm him down. ❄ Most importantly the store owner should have shown more compassion and respected your privacy.
What could the parent have done differently:
❄ Scout out the venue - bring your child to the shoe store for a very short time to introduce him to the place, smells, visual stimuli, and noises without overwhelming him. Show him the surroundings and what he can expect, so that he becomes less anxious. You may have to make a couple of trips to the store gradually increasing the time until you feel your child is ready for the fitting. ❄ Prepare, prepare, and prepare some more. I cannot stress how important preparedness is. Here are some ideas; ❅ Bring along “comfort things” that can help calm your child if needed. For example, a favorite blanket, book, foods, music, etc. ❅ Have a plan - Determine a “time
out” place ahead of time where you can take your child to calm if a tantrum begins. Examples of this can be your car, a stroller covered with a blanket, etc. ❅ If your child is sensitive to sounds, headphones/ear buds with soft music can help drown out some of the noise. ❅ Do not be shy or ashamed to ask for accommodations - Even if your child has a hidden disability that may not be obvious to others, you are entitled to them. For example, if you take your child to an amusement park and cannot wait on long lines, don’t be afraid to ask for a special pass that takes you to the front of the line. It will make the outing much more enjoyable for everyone. In fact, waiting less time on lines may make your other children appreciate having their special sibling with them. ❅ If your child is verbal and somewhat aware of his limits – have a
“time out word” that your child can use to indicate that he needs a break. ❄ Plan your visit for a time that you are more likely to have success. For example do not go shopping for shoes two days before a holiday or the beginning of the school year. ❄ Speak to the store owner for advice - explain your child’s needs beforehand and find out when is the best time to go. ❄ Understand that your child with special needs does not have to accompany you on all your errands. Sometimes it is beneficial to make two separate trips. This way both your child with special needs and the siblings get their needs met. Sometimes the siblings need one to one time as well. ❄ Most importantly – be gentle with yourself and know that all you can do is your best. Know that you are the one who knows your child best! Obviously the store owner did not handle this situation properly.
eing a parent of a child with a disability is extremely rewarding. However, it can often be emotionally and physically exhausting as well. Whereas running a typical family is a juggling act, managing a family that has one or more children with special needs can quickly become overwhelming. Caregiver burnout is common but can be minimized or avoided. Many well-meaning people want to help them but don’t know how.Here are some easy things that you can do to make a meaningful difference in so many lives: 1 Offer or arrange for someone to do some cleaning on a regular, scheduled basis; A Offer to wash, fold and put away a few loads of laundry, either in their home or yours. B Offer to wash dishes or load/unload the dishwasher. 2 Offer mom a few hours off; A To take a shower, nap, or play with the other children B Give mom a small spa gift basket – and offer to babysit while she takes a nice bath C Give mom and dad a gift certificate for dinner out and care for the family while mom and dad go out for dinner. 3 Deliver hot meals or arrange a schedule among friends and neighbors to each bring meals once a week. A Keep in mind that the meals should be given in containers that don’t need to be re
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What could the other customers could have done:
❄ They could have allowed you to be served first - If your child was truly bothering them they could have allowed you to go before them. ❄ They could have offered their assistance – other patrons could have offered you help. However, there are a few important things to consider when offering help to someone with a special child; ❅ Offer concrete ways as to how they could be of assistance. For ex-
other activities. B Offer to take kids to the bus stop 9 Put together a list of contacts of people who are willing and able to help in case of an emergency. 10 Offer to provide scheduled updates on their child’s progress to family and friends. In this way the parents don’t get bombarded with phone calls and have to re-tell details over and over. This is especially helpful if their child is in the hospital. 11 Offer to visit in a non-pressuring manner many parents of children with special needs feel isolated and alone. However, they are also very busy and overwhelmed so if they turn turned, so they don’t have the chore to clean you down once or twice, don’t be ashamed to and return the containers. ask again. B Ask mom what the family likes to eat and if 12 Be a listening ear – Call often and just there are any foods that the family cannot eat listen and empathize in a non-judgmental way. (allergies, special diet) and inform the A Do not try to fix the problem because families that will be cooking for them. unfortunately you can’t. Simply allowing the C Ask the friends and neighbors that will be caregiver to express themselves is often cooking what they are planning to make to helpful enough. ensure that the family does not receive B Don’t offer unsolicited advice as they have chicken five days in a row. probably heard it all. If they want advice, 4 Offer, or arrange rides by family, friends and they will ask for it. neighbors to doctor appointments, therapy, etc. C Don’t give phrases that may be hurtful even 5 Set up a fun hour for the siblings where you though well intended such as I could never take them to do something fun or arrange a do what you do, or you’ll get through it, etc. fun activity at your home. Many siblings crave D Be a shoulder to cry on if needed. Empathy one on one time, which can often be limited. (not sympathy) goes a long way. This also allows the parent to worry only 13 Make the offers of help wholeheartedly about the child with special needs and give without expecting reciprocation. Parents them some one on one attention. are so often physically and emotionally over 6 Offer to run errands for them whelmed that they may forget to express A Offer to go shopping with a list provided thanks each and every time. Know that they by the parents appreciate it greatly and take satisfaction in B Offer to pick up staple grocery items on a the fact that you are doing what is right. weekly basis like milk, eggs, bread, diapers, etc. When you put out kindness it comes back to C Offer to pick up the dry cleaning. you in other ways. 7 Ask mom if it would be helpful for you to I realize that this list may appear over organize and design a visual family schedule. whelming as we all have very busy lives. Then she can call or text you if she needs Even if you can accomplish one of the items something added to the schedule. from the above mentioned list it would be a 8 Offer to help with school-related needs help. Sometimes all it takes is one person to A Offer to do carpool for the other reach out and remove one stressor to make children to get to school, sports, tutoring, or all the difference.
ample, offering to keep the siblings busy while the parent helps the special child. ❅ Don’t offer the child with special needs anything like snacks or prizes. You may be reinforcing negative behaviors that the parents are working hard to change. The parents are familiar with what works and what doesn’t. The best thing to do is genuinely say “I am here if I can be of help to you”. ❄ They should be aware of their facial expressions – making sure not to roll their eyes, sigh, laugh, etc. Sometimes we don’t realize how much our facial expressions
and body language say about what we are really thinking. ❄ Do not whisper to someone else – even if it’s not about the child who is throwing a tantrum. The parents may think you are whispering about them. ❄ Don’t judge – be assured that the parent/s is trying their best and your judgment just makes it harder on them. ❄ Don’t offer unsolicited advice – The parents have their go-to people such as therapists, teachers, and doctors who they can reach out to if advice if needed. They say it takes a village to raise
a child – imagine how much more it takes to raise a child with special needs. If we all work together and pitch in to help one another, imagine what we are capable of. Juby Shapiro is a special education advocate and the parent of two children with special needs. She is the founder and director of Tafkid, a not for profit organization dedicated to helping families whose children have a variety of disabilities and special needs. She can be reached at 718.252.2236 or email@example.com. Chaya Ilene Klass, MS OTR/L, is an occupational therapist who works for the NYC Department of Education and treats children in the community. She can be reached at 347.466.6960 or ileneklass@ aol.com. March March2014 2014
By Bracha Goetz
We’ve Got It Backwards
What Kovy Taught Me
Dearest Kovy, When you were a baby, and a respected neurologist told me you would never be able to walk or talk or learn, I didn’t accept that. I fought for you to have the best therapy, equipment, technology. Everything possible to help you. Not because I was in denial; but because with all the unknowns, I didn’t want to face you after 120 years, and find out that maybe there was something more I could’ve done, and you would’ve been able to do all of those things. Or some of those things. I wanted you to have the chance, to have every opportunity, to be all that you could be. I wanted to never regret not having done more. You defied every one of those limits. It took sweat and tears and of course Divine Intervention, but you walked (with bulky KAFO leg braces and a walker); you talked (although it was often hard to understand everything you said); and you learned (in a special class, with very patient and devoted teachers and therapists). But most of all, you taught. You taught me, and you taught everyone around you. You taught that there are no absolutes in this world. No one has a right to definitively state what you will or will not be able to do; because they just don’t know. They just can’t know. You taught that there is always hope, even when things look so bleak and hopeless. You taught that limits are meant to be broken. You taught the meaning of perseverance, of stubbornly getting right back up again. And again, and again. And now, Kovy, we are facing a new battle. Now it’s not just your muscles that are challenging you, but now your nerves, too. They are deteriorating. Some of the skills and milestones which took so long for you to master are starting to slip. Your confident albeit awkward gait with your walker has slowed to a shuffle. You’re falling more. And I just want to cry at the injustice of it. You’ve had to work so, so hard to get to where you are, and now it will be taken away from you?? All the blood and sweat and tears were for… what? To lose it all eventually? Kovy, then I think back to all that you’ve taught me. It’s not about the end result. It’s about the process. It’s about what you put in. It’s about always believing and never saying never. Even if one day you may not have it anymore. It’s about waking up each morning and declaring, “Today I’m going to be the best that I can be. Today I will do the most I can. I will give it my all, and never let anyone tell me I can’t.” What you can do doesn’t define who you are. And when I look into your twinkling eyes, I know that I have done everything I possibly could, and maybe even more than that. And I will not stop now. I accept that there are a lot of things beyond our control; I do not know what the result will be. But I do know that your life has a deep, rich meaning; your very being radiates a message of hope and perseverance to everyone. You are a miracle; you are an inspiration. Facing irreversible challenges doesn’t take away from all that you’ve accomplished; no one and nothing can take that away from you. I love you with all my heart and soul, and I always will. --Mommy 34
“Mommy, I can’t read this. It’s all upside down! Mommy, it’s the truth Why do you have that frown?” “b’s and d’s aren’t easy. For me, they are hard. M’s and W’s I can’t tell them apart.” “Tatte, I can’t daven, Like others in shul. I don’t want to go. I look like a fool.” “Kids laugh at me. It’s because I’m so slow.” Years have passed by, And you sure did grow. There was no instant cure. You worked hard many hours. You didn’t give up, Drawing out untapped powers. Doors started to open, We thought were sealed tight. The first blessing read, Brought such huge delight. There’s still dyslexia, But your eyes shine with joy. Courage is now, A big part of our boy. You learned how to struggle. You’re not scared to try. You fall down. You get up. I barely hear you sigh. “It’s all upside down!” Your words were not wrong. Those given a big weakness, Can end up the most strong. Bracha Goetz is the author of 24 Jewish children’s books, including Let’s Stay Safe, Let’s Stay Pure and The Invisible Book. She can be reached at firstname.lastname@example.org.
By Yehuda M.
For Your Viewing Pleasure…
n my last article, mention was made that our computer is often used to provide entertainment for 5 of our children, ranging from 4 to 14. Granted, 4 of those 5 children have special needs- 2 of whom are on the spectrum and 2 others with ADD/ADHD. I said that explanation would be required for this phenomenon. In truth, the only thing that can come close is a classic Uncle Moishy or a particularly moving episode of Winnie the Pooh. Otherwise, the inevitable litany of questions arise as the children jockey for position: “who’s turn is it?”, “doesn’t she have homework to do?”, “doesn’t he need to go to shul with Tatty?”, “doesn’t she still have kriah to do with Ima?”, “is the living room completely clean yet so he can go on”, “I don’t think I want to come to Shoprite this time (see previous article), etc. While most families may take the time to make an organized schedule, our solution has gone in a slightly different direction. Through the last year, we have inherited, begged for, purchased at rockbottom prices other computers in order to deal with this issue. Of course, you have to treat each machine just right if you want it to do what you want. Namely, one has no volume- only children who can script entire episodes can watch that one. Another has volume but the speaker is erratic so either it is too low or the whole house can benefit from what is being watched. Another one has no access to shows but has a functioning DVD player. And finally, the one with everything but is in the basement with no heat. I know what you must be thinking- he’s making that up- there is no way that can actually be true. Wouldn’t that be nice??
A Little Chocolate Milk Can Go A Long Way
y previous submission ended with the question “How can 5 children, 4 with special needs, be able to go, (and dare I say look forward to going), to Shoprite each Sunday afternoon without causing too much of a scene in a potentially crowded store?” Well…firstly, timing is everything. We go when we think the most amounts of people are at home. So… I love football season since the 4:00 Giants game is my best friend. Only the people who are paid to be in Shoprite or have no interest in football are in the store. I fall into neither category but that doesn’t matter…what matters is that the only people left are people who are paid to be courteous or people who are tolerant of others (I haven’t done an official study but my experience is that sports fans (short for FANATICS) tend to bring their passion to other areas as well-not a good recipe (pardon the pun) for a father with several special needs children in a store. Secondly, it’s all in the carrot and the stick. The carrot- everyone is entitled to the drink of their choice (provided of course it is less than a dollar- “is the good chocolate milk on sale this week?”). Hence, “who’s going to behave in the store?” is always met with a resounding “yes”. Of course, over years of doing this we could probably shunt that money to solve the deficit of some third world countries but don’t get me started on that!. Now the stick- drinks are selected midway through the trip but only given out on the car ride home. Therefore, suffice it to say that some drink privileges have been lost in the parking lot on the way to the car. Too strict?? Take 5 kids to Shoprite for countless Sundays and get back to me on that one!
By Laura Palley
They’re Getting Older and So Are We…or… Are We There Yet?
ome things just take a while to sink in. My husband and I, rapidly approaching our 60’s, finally realize we won’t be ‘retiring’ as specialneeds parents any time soon. We still hope that our kids will reach independence, despite their challenges and quirks. But the hard truth is that all four of our kids, ages 15-27, (three on the spectrum) are living at home, and we are very much involved in their daily management. We are still carpooling; attending program reviews; managing emotional crises; meeting with doctors, therapists and case workers; searching for job opportunities; and teaching social skills while our peers are enjoying grandchildren, buying vacation condos, making aliyah, or discovering second careers. (I know, never compare, but still… one can’t help but notice.) It’s not that my husband and I have no lives of our own – far from it. We have friends, hobbies, and volunteer work. We travel (maybe not so often.) We make a conscious effort to have fun together (this year we’re taking pottery at the Y!) What sets us apart is that we travel a slower road, separate in time and space from our friends, and that our priorities are different. The longterm needs of our kids still take precedence, much as they did when they were younger. The tremendous effort and stamina required sometimes leave us exhausted, with limited time for socializing. On the other hand, thank G-d, we still have our health, some of our sanity, and a lot of perseverance and life experience to offer our kids as, step-by-step, they reach for their goals. It’s a tremendous amount of work, but the rewards are rich when they come. For instance, our daughter will soon be graduating from Stern College after overcoming many challenges. Her achievement is well earned and our pride and pleasure in her are profoundly deep. That’s the gold we strive for – the satisfaction of seeing their hard-earned successes. I guess those ‘golden years’ will just have to wait. With continued good fortune, we will live to see our adult children launched into their own (separate) orbits. Let’s hope we still have the health and energy to enjoy our ‘retirement’ years when they come. Gotta go. Carpool is in 15 minutes… Laura Paley lives with her husband, 4 children and 3 cats in Paramus, NJ March 2014 35
You just can’t make this up! After a very long winter, spring will soon be upon us. For many parents of children with special needs, spring is also IEP time. The following are real quotes said to parents by their school districts: “We were told that we can’t give health paras today” Why? Did they run out of them? “You can have 2 OT and 3 Speech or 3 OT and 2 Speech, but if you also want PT, then you can have 2 PT, 2 OT and 2 Speech”
You can pick door #1, door # 2 or door #3… Maybe the health para is behind door #4??? “Parent members don’t legally need to attend IEP meetings anymore. Please sign this waiver, waiving your right to a parent member otherwise we will not be able to conduct your child’s IEP meeting today” Perhaps I couldn’t waive my right to a parent member because no parent member was present… “A non verbal child cannot be bilingual?” Really??? Can they be monolingual? “Your child is too low functioning to benefit from a psychological evaluation” How did you determine that if you do not first perform a
psychological evaluation? “I understand that your child is at the bottom of her class, but somebody has to be there” I didn’t know the DOE was into pyramid schemes… “Your child attends an NPS school and the State has sent an internal memo that students in NPS schools cannot receive related services outside of school. We are not permitted to give you a copy of the memo”
Was it written in invisible ink??? Will it self destruct??? “We don’t do methodology” Do you also not “do” progress??? “You wouldn’t “really” place your child in a public school?” FAPE stands for a Free Appropriate what???? “We cannot resolve things at resolution meetings” ???Say what???
Vote for Meir Efraim
any of you will remember that last year at about this time, Meir Efraim Turner was entered into the NMEDA Mobility Awareness Month online contest to win a wheelchair accessible van. With your help, he received an amazing 6,000 votes in the space of a few short weeks, but failed to make it into the contest finals. Even though Meir Efraim was a bit short of making it as one of the few finalists, he was the true winner in every way! For who else can say that they have so many thousands of people who cared enough to try to make him happy? Each of you that voted brought such joy to him throughout each and every day of the contest! To him, the rapidly multiplying numbers of votes meant more than even winning the van itself—for these were HIS FRIENDS voting FOR HIM! And those of you who stopped him in the street, called, and emailed him to show your support really made his day! This year, with your help, he is going to give it another try. He has been registered in the NMEDA contest, and awaits your help to make him a winner. Please go online every day to vote and spread the word to your friends and family. Anyone—anywhere in the world—can vote, but only one voter per IP address (meaning a network counts as one vote). You can double your vote by answering a daily mobility question before voting. Anyone who wants to receive a daily email reminder with the answer to the mobility question can contact Golda@Beineinu.org.
To vote, go to at http://www.mobilityawarenessmonth.com/entrant/ meir-efraim-turner-monsey-ny/. Enter your user name, and you will be emailed a username and password to use each time you vote. And yes, your daily vote DOES count. 6000 votes were obtained by hundreds of people who took the few minutes every day from their hectic schedules to show that they care. Thank you in advance for your support.
Letter to Chavie
My dearest Chavie, my princess, Tomorrow is your birthday. 19 years have passed in the blink of an eye. I can remember as if yesterday learning I was pregnant with you, full of joy and wonder as you made me a mother. You entered this word on Shabbbos, our holiest day. A holy soul always. I was just looking at pictures of you. Beyond beautiful, your smile lighting up a room, always smiling, with your eyes, so happy. Your giggle was infectious, your attitude incredible. Your love of music and certain people, your good taste abundant. Always ready to “go” at a moments notice. You were everybody’s princess, and you knew it. You never walked by yourself, never talked, never drove. Yet you had so many friends and loved ones. So many years of discomfort and pain, how we tried to help you. And you smiled. Tomorrow is a birthday you will never see, and the pain in my heart is unbearable. You, just like your brother, loved birthdays the most, sharing everybody’s all year long. What do we do with no cake, no candles, no balloons? We are adrift, lost without you. How we miss you and miss you I am still your mother and always will be. I will remember the good times and sad, cherish the love, hugs, and kisses and that beautiful smile forever for all time. Love, --Mommy
Experiencing Nature in a Special Way
efore enlisting in the IDF, I put a lot of consideration into where I wanted to serve. I thought about how I would be able to make the most of my abilities and how I can best contribute of myself, how I would be able to positively affect people. I understood that I would have to do something that I loved and felt connected to. I love nature. I believe it is a therapeutic tool, an inseparable part of what we are and an inseparable part of the continuation of our existence here on the face of this earth. I see “walking our land” as the best way to feel and connect to the place we live. This is how I decided to be a tour guide, one of the positions in the Education Corps that is offered by the IDF to new recruits in the army. I accidentally became a guide in LOTEM. On the day of my screenings for tour guiding in the army, I heard about the organization LOTEM as part of a panel where different “green organizations” were being presented. LOTEM- Making Nature Accessible, is involved with tour guiding and running nature activities for people with special needs, with the intention of empowering these individuals. I believe that regardless of one’s limits in life, each person deserves to enjoy nature, to hike in the Land of Israel and to feel equal to every other individual. During my army service I was privileged to also learn much about the Land of Israel, to become familiar with it by foot, to learn about nature and the people who passed here throughout history and the people who live here today. I met many different groups of individuals- those with physical disabilities, some of whom use a walker or wheelchair, children and adults with developmental disabilities, children with behavioral and
emotional problems, people with communication disorders such as autism and many other populations. I met people who can go into nature but who require special attention and tailored instruction or a path that is appropriate to their needs, such as paths that are wheelchair accessible (which we unfortunately do not have enough of), paths that are more comfortable for those who have difficulty walking, paths that challenge at risk youth. I was privileged to bring into nature children who never had been on a hike before and to join in their excitement of chirping birds and flowing water. To understand what is nature and how it can be enjoyed with all the senses. To visit historical sites with adults who live in Israel but never had the opportunity to visit these places. I had the privilege to be present in their moments of difficulty during a challenging hike which ultimately led to feelings of success and ability. I had the privilege to receive much love that people with special needs know how to give. I was privileged to experience with them the joy that bursts forth on a hike when vast spaces become opened before them, when the wind blows on their faces, when the voices of animals are heard and their feelings and capabilities are strengthened. Each year, LOTEM succeeds to bring thousands of people of all ages and abilities on nature outings, providing them a sense of empowerment, ability and equality. LOTEM- Making Nature Accessible is the leading organization in Israel providing accessible
hikes and nature activities to children and adults with special needs. A JNF partner organization, LOTEM serves 30,000 people a year. To make a donation go to www.jnf.org/lotem March 2014
Crustless Sweet Potato Pie
Gluten Free Recipes
oday, there are many gluten-free products on the market for people who cannot tolerate gluten due to Celiac or other conditions. It is no longer difficult to create healthy, nutritious, and appetizing meals and snacks for your family. Following are a few tempting gluten-free recipes courtesy of some of our Beineinu members. Recipes can also be found online at www. glutenfreesteve.wordpress.com and www.delightglutenfree.com.
Cook needed amount of brown rice, slightly on the moist side. Flavor the rice (Ideas below for flavor combinations) Spoon while hot, into cups in muffin pans, and press in firmly. Let cool. Reheat or serve at room temperature. It sticks together but this is not gluten. Also useful for those with egg allergies / intolerances) When rewarmed, they are in one “unit”. This means: its finger food for the kids. It also looks attractive on a Shabbos plate. You can be creative w/ your flavors, but here are some ideas: olive oil (1 Tbsp. or less), onion powder (or sautéed), garlic powder (or fresh minced), parsley, sea salt cinnamon, raisins or craisins, honey italian seasoning, onion and garlic pdr, olive oil and sea salt honey, lemon rind (zest) vanilla and chocolate chips (remember for those sugar free people, Gefen makes one with maltitol) shredded carrots, ginger powder and tamari (wheat free is available for gluten free diets) teriyaki flavor: garlic, tamari/ soy sauce, ginger and honey shredded carrots, honey and raisins (nice for Rosh Hashana for those needing sweet and gluten free) 38
Spray a springform pan with oil spray Crust: 5-GF cookies Put cookies in blender or food processor and make into crumbs. Cover the bottom of the pan with the crumbs. Filling: 2-8 oz packages of dairy-free cream cheese 1 and 1/4 cup granulated sugar Egg Replacer for 4 eggs 1/3 cup dairy-free sour cream Topping: Another 1/3 cup of dairy-free sour cream Preheat oven to 350ºF. Beat cream cheese in food processor or with mixer. Add sugar, egg replacer, and sour cream. Pour in springform pan. Bake for about an hour or until the cake looks solid and lightly browned. Cool and spread on the remaining sour cream. Put in refrigerator for a couple of hours. Top with blueberries or strawberries or serve as is.
3-4 large sweet potatoes, peeled and cubed ½ cup sugar ½ cup soy milk 1 large egg, beaten 3 Tbsp margarine, sliced ½ tsp vanilla ½ cup brown sugar 1/3 cup all purpose gluten free flour 3 Tbsp margarine, melted ½ cup pecan pieces Preheat oven to 350ºF. Spray a 2 quart baking dish with nonstick oil spray; set aside. In a large pot, bring 2 inches of water to boil. Add sweet potatoes. Cook for 25-30 minutes (until tender). Drain and return to pot. Add sugar, soy milk, egg, margarine, and vanilla to the sweet potatoes. Using the back of a wooden spoon, gently mix the ingredients, not mashing the sweet potatoes too much. Transfer mixture to baking dish. In a small bowl, combine the brown sugar, flour, melted margarine, and pecan pieces. Sprinkle topping over the sweet potatoes. Bake uncovered for 25 minutes until set.
Oatmeal Date Bars
3/4 cup chopped dates (can be partly raisins and prunes) 6 tablespoons light olive oil 1 beaten egg 1/2 teaspoon vanilla 1 1/4 cup oatmeal 1/4 cup chopped nuts or sunflower seeds(optional), 1/2 teaspoon cinnamon (optional) 1/4 teaspoon baking soda 1 tsp. vanilla 1/2 cup dried sweetened cranberries (optional) Preheat oven to 350ºF. Combine dates, oil, egg and vanilla and blend until thick but smooth. Add flour, nuts, cinnamon, and baking soda. Mix until dry ingredients are moistened and spread evenly into a greased 9”x9” pan. Bake about 20 minutes, or till firm. Cool and cut into 3 inch bars. Store tightly covered.
Vegan Chocolate Tapioca Pudding
1 box of Chocolate Coconut Milk 1/2 cup tapioca balls Mix tapioca into a pan with the milk. Let sit for 15 minutes. Cook on low heat until it boils and starts to thicken. Turn off and let cool.
Brown Rice Cookies
1 cup Brown Rice Flour 2 tbs. vegetable oil ¼ cup honey or maple syrup ½ teaspoon salt 1 tsp. (gluten free) vanilla 1 egg (beaten) 1 cup nuts (ground) Optional: add 1/8 cup of medium shredded raw apple (baking apples) Blend all ingredients thoroughly. Chill for several hours or overnight. Roll the cookies into 1-inch balls and arrange on oiled baking sheet. Press flat with bottom of glass. Bake at 350ºF for 10-12 minutes.
Peanut Butter Brownies
¾ cup packed brown sugar ¾ cup sugar 2 eggs 2 tsp. vanilla ½ cup peanut butter 1/3 cup oil 1 cup all purpose gluten free flour 1 tsp. baking powder ¼ tsp. salt 12 oz. chocolate chips Preheat oven to 350ºF Beat first four ingredients together until creamy. Add eggs and vanilla. Mix in flour, baking powder, and salt, and spread into greased 9 x 13 pan. Sprinkle chocolate chips on top. Bake for 5 minutes. Remove from oven and swirl batter. Return to oven and bake for 30 minutes.
By Elliot M. Katz MA, OTR/L
Wheelchair postural support and therefore re- propriate mobility system will be This position affords the child with the best position to interact with quire built-in support. A child with recommended. Positioning: decreased trunk strength and con- Mobility specialists are able to his/her environment. The mobility
How do I know if my child is correctly positioned in a manual wheelchair?
trol may not be able to hold themselves upright in a typical stroller. Parents are advised to consult with the therapist to create an effective support insert to use with the
custom fit the wheelchair for the child. The following are some of the measurements that they consider to ensure a comfortable position for the child:
stroller. When a child physically outgrows a stroller or becomes able to self-propel a wheelchair, parents should reevaluate if the stroller is still most optimal or if another option should be considered. . When it is determined that a child needs a wheelchair, Seating and Mobility Experts, such as OTs or PTs, conduct a wheelchair evaluation. This evaluation includes: assessing a child’s medical history examining the current use of mobility devices (e.g., pediatric walkers and crutches) and orthotic devices (e.g., braces) conducting a physical mat assessment to assess postural alignment (in which range of motion and strength are measured for the person’s trunk, pelvis, hip and lower extremities in both a sitting and supine position) and to obtain body measurements observing activities of daily living (such as dressing and bed transfers) identifying any physical barriers in the home environment. Based on the results of the evaluation, the most ap-
Seat Width – the widest distance between both hips for the even distribution of weight. Wheelchair width dimensions may be categorized as preschool (10”), pediatric (12”-14”), and junior (16”). Seat Depth – the distance between the rear of the buttocks to inside of a bent knee to allow weight bearing through the thigh. Footrest clearance – the distance between the floor and footrest to allow ground clearance on various surfaces (e.g., carpet, tile, etc.). Back Height – the distance between the seat base and the top of shoulders to provide back support. Head rests will be recommended for children who have low neck tone or lack head control. Arm Height - the distance between the seat base upholstery to the position of bent arms to maintain symmetrical alignment of the upper extremities. Typically, the ‘90-90-90 degree’ sitting strategy where elbows, hips, knees and ankles are positioned at 90 degrees) is used as a framework for ideal wheelchair positioning.
It is very important to make sure that people of all ages with orthopedic and neurological conditions are positioned correctly in a wheelchair. Manual wheelchairs are the primary means of functional mobility for children with congenital neurological conditions (such as cerebral palsy) and short-term orthopedic conditions (such as leg fractures). Selecting an appropriate wheelchair is a multi-interactive process which involves the collaboration of the parent / child, physician, occupational therapist (OT) or physical therapist (PT), assistive technology professional and an insurance payer. The primary goal of prescribing a manual wheelchair is to promote an optimal seating posture, to maintain skin integrity of the human body, and to improve independent functional mobility in order to actively engage in daily activities. Infants and small children with orthopedic and neurological conditions are primarily transported in strollers. Strollers are simply lightweight mobility bases. Strollers are dependent-push mobility systems, meaning, parents will push the stroller to transport their children instead of the children being able to push themselves (as is the case with an Independent push mobility system such as a wheelchair). The height of the push handles are typically 70%-80% of the height of the parent / caregiver to allow a comfortable arm-hand position. Though strollers are easily portable and appear non-wheelchair like, they may not provide appropriate
specialist will recommend a wheelchair that fits the child when positioned at 90/90/90 degrees. Some children, due to physical limitations, are not able to be comfortably assume or maintain a 90/90/90 degree position for a length of time. In such cases, the therapist has to modify the wheelchair to comfortably seat the child. . There are customized seat back options and adjustable mobility bases that are used in such instances. . An equally important concern that the therapist must consider is regarding wheelchair cushions. Clinicians must identify the length of time spent in a manual wheelchair, skin integrity / history of pressure sores, and ability to weight shift in the wheelchair to determine an appropriate seating cushion. This will ensure comfort and decrease the possibility of getting pressure sores from sitting for extended periods of time. Parents should periodically check that their child is still positioned in his/her optimal position because as he/she grows their wheelchair position may need to be repositioned. The child should be checked regularly for the appearance of pressure sores. If they are found, they must be treated and brought to the attention of the therapist so that the therapist can adjust the cushioning on the wheelchair. Finally, monthly routine check-ups of wheelchair components (such as brakes and tires) should be conducted to ensure wheelchair safety. Parents can do this or ask the therapist for help. Elliot M. Katz MA, OTR/L is a Senior Occupational Therapist at Beth Israel Medical Center in New York City. He was an adjunct instructor in the professional entry-level OT Program at SUNY Health Science Center at Brooklyn (Downstate) for 10 years. His specialty includes Adult Rehabilitation, Seating & Positioning, & Homecare OT Services. March 2014
J Cooper has been developing Assistive Technology (for special needs) since 1983. He is considered a pioneer in his field, going back to the early days of Apple when there was no tech for special needs. These days he tries to stay current and relevant, with the iPad. Nothing has changed this field more than the iPad. There is a lot of power in the tablet, to be a voice for someone, to play, to listen to music, to learn, to communicate online, to surf the internet, and more. The battery life, the portability, the availability of so many apps is a real step forward in tech for ‘our’ kids! RJ has re-invented himself for this new technology.
JP AD: 75
Full Elastic Pants with Mock Fly
He offers many iPad accessories and apps at the client’s request. That is, his inventions/adaptations come from them asking him to find, adapt, or create something for their child. Most times, there are other children that might be able to use this technology. However the iPad, although portrayed (even by Apple) as a “magical” device, is not. The same lessons of moving through shaping and progressions that technology developers have learned since the early days still apply. These lessons are what many are trying to pass over. Successful implementation takes more than
presentation of the iPad and a high level AAC app. According to RJ: “You must walk before you run.” He offers his experience and education (Dev. Psych., Computer Science, Autism Instruction), by listening to his client’s needs and trying to help with tech, techniques, suggestions, and guidelines. RJ Cooper Special Needs Tech Specialist 1-800-RJCooper www.rjcooper.com infoRJ@rjcooper.com https://twitter.com/ intent/follow?screen_ name=rjcooper725
eBook/App Turns Child’s First Hospital Visit into an Enlightening Experience
One Piece Jumpsuit with Back Zipper
handler, AZ July 18, 2013 – Luca Lashes llc. continues its efforts to turn children’s “fearful firsts” into educational experiences with the release of its eighth multilingual eBook and app for children in this series. Entitled Luca Lashes® Visits Mommy in the Hospital, the book helps young children and children with special needs better understand the many facets of visiting someone in the hospital. The main character of the book, Luca, is a boy who has magic eyelashes that give him special powers and make him brave. The story is available in any one of several languages – English, Spanish, Chinese, French, and Italian – to meet diverse language needs, as well as to introduce new languages to children. The app version of the book also includes… lots of interac-
tive opportunities that combine learning and fun. The app can be played in a “read to me” format to provide young chil-
dren with assistance in reading the book, or narration can be paused, so children can explore the page.
Created by long-time educators Nicole and Damir Fonovich, the Luca Lashes® eBook and app series were inspired by their little boy, Lucas, and their desire to help him be brave in all his childhood discoveries. The back of the book offers a parental section to help initiate a discussion. About Luca Lashes® LLC Luca Lashes® is a series of interactive apps and eBooks helping children to be brave when confronting new, unexpected and sometimes fearful, experiences.. To stay up to date on Luca Lashes, visit www.LucaLashes.com and sign up for the e-newsletter. You can also connect with Luca Lashes® on Facebook, Twitter, YouTube, LinkedIn, Pinterest, Google+, or its blog.
The Therapy Resource for Families & Professionals!
Parent-centered Activities • Speech & Language • Sensory Integration • Early Learning •
225 Arlington Street Framingham, MA 01702 Tel: (800) 257-5376 Fax: (800) 268-6624 www.therapro.com
Serving the Community Since 1979
Explore the Possibilities
Come to the Expo to experience:
Fun For Kids
Essentials For Seniors
Assistance Animals Important Services
Dance Dance Dance
Register online for priority access
Continue your Expo experience all year with Abilities365.com—our new online resource community! Atlanta
New York Metro May 2 - 4, 2014
June 27-29, 2014
Georgia World Congress Center
New Jersey Conv. & Expo Center
Schaumburg Convention Center
March 14-16, 2014
July 25-27, 2014
Sept. 5-7, 2014
Nov. 21-23, 2014
Boston Conv./Exhibition Center
San Jose Conv. Center
Los Angeles TBD, 2015 March 2014
BULLETIN BOARD Compiled By Elisheva Stein
Yeshiva Ohr Dovid - a Great Mainstream Alternative
e live in a wonderful community. One in which none of us is ever alone or forsaken. Among us, there are many children struggling to overcome social, emotional, and behavioral challenges. For them, there is a beacon of hope to be had inside the walls of Yeshiva Ohr Dovid. Established over 15 years ago as Haor Beacon School and renamed in memory of Dr. Dovid Pearl, Yeshiva Ohr Dovid is a unique and exclusive yeshiva. We have small self contained classes from pre 1A through eighth grade, all led by master-level experienced Rebbeim and teachers, and assisted by highly trained and professional classroom paras. Our school welcomes but is not limited to children who may be struggling with ADD/ ADHD, ODD, Aspergers, and PDD as well as other emotion-
al disabilities which may or may not affect their academic capabilities. Our curriculum mimics a mainstream yeshiva
school’s mission of ensuring that each child becomes a productive member of society, we invest a tremendous
in both Hebrew and English subjects; however, we offer individualized instruction based on each child’s learning style and level. In order to achieve our
amount of time and effort in behavior modification strategies and social-skills training. Originally set up by a child psychologist from the NYU Child Study Center, each
grade has an individualized behavior system- based on the concept of a token economy, modified according to their individual needs. Through the use of the Social Thinking method, our students participate in daily social groups, learning and mastering a wide array of specific social goals. In addition, we accommodate a child’s IEP by providing highly skilled and experienced, speech, physical, occupational, therapists, as well as a social worker to fill each child’s mandate. Our children enjoy a variety of extracurricular activities, such as educational trips, weekly basketball, as well as exciting and interactive Rosh Chodesh Assemblies. For more information about our school or to schedule a visit, Please contact us at 718.951.3650.
Camp Discovery-Summer Should be Fun for Everyone
ifteen years seems like a lifetime, but to Jonathan Cooper, LCSW, who was the first Kulanu employee to be hired it seems like a blink. Seeing the need for a summer camp for children with special needs, Cooper approached Camp Hillel in Cedarhurst to get space. Camp Discovery began by accepting campers with any type of disability. “We were not going to discriminate against our own”, said Cooper. Anyone who had a disability was entitled to a good summer. Thus began a camp program that initially had volunteers as counselors to presently including paid professional and experts in the areas of their activities and support of children with Special needs. Three years ago Kulanu moved to their state of the art new building. Included in this building are therapy rooms, a Snoezelan sensory room , an indoor gym and many other amenities. Camp Discovery now provides inclusion opportunities, various levels of care from high functioning to one on one. We offer a variety of activities given by activity specialists who have a back-
ground in special education. We offer vocational training, social skills training and an extended educational program for that student with an IEP. In addition to our camp, Kulanu Academy offers a 12 month education program 12-21, vocational training program for 18-and up, and a parent advocacy center.. Included in the social service program is respite, and weekend and after school programs. For information please call Vicki at 516.569.3083 x140 or Vicki@kulanukids.org.
BULLETIN BOARD F
or many years HASC Center has been enhancing the lives of individuals with developmental challenges through a spectrum of residential, day habilitation, residential habilitation and respite programs. What is somewhat lesser known is that HASC Center has been at the forefront of pre-vocational, supportive work, volunteer opportunities and competitive employment placements. These job related initiatives demanded a multifaceted approach which involved the cooperation of many people working in concert in the arenas of job development, travel training, intensive job coaching, counseling and finding employment opportunities whose employers are willing to hire those who are different than their traditional employees. Today HASC Center can name individuals with special needs who are competitively
f you’re an occupational therapist, take a break from Pesach cleaning and join fellow OT’s at the Annual AOTA Conference on April 3-6 in Baltimore. In addition to partaking in a communal Friday night and Shabbos lunch seuda, there will also be an afternoon of Torah lectures and issues related to the OT profession. While socializing with peers in your field, you will have the
HASC CENTER eCycling: A new path to Employment employed, integrated into the mainstream work environment, earning at least a minimum wage and contributing gainfully to society. To date, HASC Center, has retro-fitted a factory-like facility setting, into a modern, technologically sophisticated work environment with specialized equipment and highly complex security systems. These systems track each piece of electronic equipment which enters the facility until it is disassembled into its component parts. Large pallets of used comput-
ers, digital boxes, printers and copiers arrive at the facility where they are catalogued and immediately thereafter the dis-
assembly begins. The workers both with disabilities and without, using hand-held electric screwdrivers, drills and other
tools take apart the particular item and then place each component part into a respective bin. Hard drives are ground up in a specially acquired piece machinery consistent with certified R2 rating. The eCycling Center provides “green tech” jobs for the disabled. However, the eCycling program is very much dependent on individuals, mid-size businesses, and large corporations in providing their unwanted electronic equipment to the eCycling Center. There are three im-
portant advantages for businesses that send HASC Center’s eCycling their ‘retired’ equipment. First, their business continues to grow without concern about how and where to discard aging equipment. Second, they know that their ‘retired’ equipment is being discarded in an eco-friendly manner helping the environment and not contributing to the waste stream. Third, they are helping to support the employment of people with disabilities which will facilitate their growth and contribute to their establishing productive and meaningful lives. From every perspective, recycling with HASC Center is a winwin experience. For more information please call Josh at 646.285.5362. eCycling drop off is at HASC Center, 5601 First Avenue, Brooklyn, NY 11220 and 1221 East 14th Street Brooklyn, NY 11230 from 9 am – 5 pm.
AOTA opportunity to discuss and address religious obstacles that may arise on the job and learn how to resolve them during past AOTA President’s, Barabara Kornblau, JD, OTR/L, talk on discrimination from a personal, professional and legal perspective and also a round-table discussion led by Rivka Molinsky, PhD, OTR/L Chair/Director Touro College OTA Program. There will also be several
educational lectures that will enhance your knowledge of the profession such as speaker Shoshana Shamburg’s thoughts on “Jews, Medicine and Miracles: Origins of Todays Holistic Healing Using Biblical Sources” and “MultiSensory Education & OT from a Torah Perspective.” The Shabbos program will be held at the AOTA Conference Hotel, the Hilton Baltimore (401 West Pratt Street)
which is connected by a skywalk directly to the Baltimore Convention Center (there is no Eruv in this part of Baltimore). There will be davening on Shabbos as well as during the weekdays and Torah reading if there are enough male participants. Contact Baltimore@OJOTC.org for further information.
March March 2014 2014
BULLETIN BOARD Tu Beshvat Tree-Planting Ceremony Symbolizes Ongoing Growth at Seeach Sod
n recent years, horticulture therapy has earned increasing recognition as a valuable rehabilitative tool, particularly in the field of special education. Horticulture therapy has been proven to help improve memory, cognitive abilities, task initiation, language skills, and socialization. In honor of Tu Beshvat, the students of Seeach Sod participated in a large-scale tree planting ceremony, as part of the Horticulture Program. A total of 60 fruit trees, including fig, pomegranate, olive, orange, and lemon trees, will
be planted over the course of this month in the courtyards of Seeach Sod’s various campuses. The saplings were donated by generous donors from the United States, who hope to see the students of Seeach Sod blossom and grow, just like the trees they have planted. These newly planted trees will provide another dimension to Seeach Sod student’s horticulture experience – they will be in charge of watering and tending to the trees while exercising their patience as they wait for the first shoots
to bloom. Seeach Sod’s CEO Rabbi Shimon Levy said during the Tu Beshvat ceremony: “The planting of these trees is a poignant representation of our students’ blossoming growth. May these trees yield abundant fruits, which we should merit eating in the
Send information about your organization for the Bulletin Board to email@example.com
Beis Hamikdash!” Participating as guests of honor were Rabbi and Mrs. Ginzburg, the Rav of the Chofetz Chaim Torah Center in Cedarhurst, New York and Shmuel Sackett, an activist who promotes tree planting in Israel.
CALENDAR OF EVENTS APRIL 2014 1
Asperger and High Functioning Autism Parent Support Group
Brooklyn Center For The Independence of The Disabled Where: 27 Smith Street, Brooklyn, New York Time: 6:00-7:30 pm More Info: 718.951.5186 or e-mail: firstname.lastname@example.org Go to www.autismsupport2014.everbrite.com to register
Support group dealing with children diagnosed with ADD/ ADHD. Sponsored by SHEMESH and CHADD of Baltimore.
3-6 Occupational Therapy Shabbaton
The Orthodox Jewish Occupational Therapy Chavrusa invites all Occupational Therapists and OT students to join us at a Shabbaton in conjunction with the annual Conference of the American Occupational Therapy Association.
Where: Holiday Inn, Clark, NJ www.autismnj.org Time: 8:15am
Model Matzah Bakery
JCC of Central NJ, Where: 1391 Martine Avenue, Scotch Plains, New Jersey More Info: 908.790.0008 or www.chabaduc.com
The Friendship Circle of Union County presents PrePassover Family Fun Day for children with special needs and their families. Make your own matzah from start to finish. Registration requested.
Are you looking for support and guidance, for networking with other parents, for services and resources available in the community or to learn how to be the best advocate? Join us monthly to learn, talk and share in this circle. Free sessions are facilitated by Leslie Morris Glass, MSW/LCSW
Long Island Special Needs Expo
Where: The Viscardi Center 201 I.U. Willets Road, Albertson, New York Time: 10:00 am-5:00 pm More Info: 516.279.3727 or email at email@example.com
Discover Special Needs Resources for Children and Adults. Meet a large variety of product and service providers, attend seminars and demonstrations. Free Admission.
Brooklyn Center For The Independence of The Disabled Where: 27 Smith Street, Brooklyn, New York Time: 6:00-7:30 pm More Info: 718.951.5186 or email - firstname.lastname@example.org Go to www.autismsupport2014.everbrite.com to register
A support groups which allows parents to voice their concerns and share ideas and strategies. Registration requested.
Where: 4 West 54th Street, New York, NY Time: 11:00am-1:00pm for ages 5-17 2:00-4:00pm for ages 18 and up More Info: 212.408.6347 email@example.com
A program for individuals with learning or developmental disabilities and their families. Each month, the focus is on a different theme, exploring various artworks in the galleries and creative artworks in the classroom.
Los Ninos Young Child Expo and Conference Where: New York, New York
Shema Kolainu Autism Workshop
Where: 4302 New Utrecht Ave., Brooklyn, NY Time: 10:00am-12:00pm More Info: 718.686.9600 www.shemakolainu.org • firstname.lastname@example.org
Curriculum Development for Early Learners to Advance Learners. Registration requested. (Type II BCBA CEU’s available for this workshop)
See April 1st listing for information
8 Address: 1768 Ocean Avenue, Brooklyn, NY
More Info: 718.686.3491 Chayala Greenwald Chayale_greenwald@ohelfamily.org Jewish group offering fun, inspiration, and support for high school girls who have a sibling with special needs. Sibshops are open to all siblings, regardless of where the individual has service coordination. There is a small fee for attending, with discounts for multiple siblings.
Where: Stamford, Connecticut More Info: www.yachad.org/family
Ohel Sibshops—Brooklyn Boys 11 Where: 1768 Ocean Ave. bet. Ave. L and M
Brooklyn, New York More Info: 718.686.3491 Chayala Greenwald Chayale_greenwald@ohelfamily.org
Jewish group offering fun, inspiration, and support for boys aged 7-11 who have a sibling with special needs. Sibshops are open to all siblings, regardless of where the individual has service coordination. There is a small fee for attending, with discounts for multiple siblings.
Museum of Modern Art Create Ability: Picture This!: Photography
See April 13th listing for more information
Ohel Sibshops—5 Towns Teens 22 See May 4th listing for more information Ohel Sibshops—5 Towns Girls 25 See May 4th listing for more information Ohel Sibshops—Brooklyn Girls 25 See May 11th listing for more information Shema Kolainu Autism Workshop 29 See April 30th listing for more information
Ohel Sibshops—5 Towns Boys
Jewish group offering fun, inspiration, and support for boys aged 7-11 who have a sibling with special needs. Sibshops are open to all siblings, regardless of where the individual has service coordination. There is a small fee for attending, with discounts for multiple siblings.
YACHAD Northeast Shabbaton
YACHAD’s Northeast retreat for individuals and families with special needs, featuring a weekend full of leaning, sharing, fun, games, and togetherness. Come enjoy networking, workshops, and an enjoyable weekend. Scholarships available upon request.
Where: NJ Convention & Expo Center 97 Sunfield Avenue, Edison, NJ More Info: www.abilitiesexpo.com
Where: 156 Beach 9th Street, side entrance on Seagirt • Far Rockaway, NY More Info: 718.686.3491 Chayala Greenwald Chayale_greenwald@ohelfamily.org
See April 8th listing for information
Ohel Sibshops—Brooklyn Teens
Abilities Expo is the place for people with disabilities to find solutions. They showcase the latest in products and services, as well as solutions for physical, sensory, learning, and developmental disabilities. Vendors are on hand to demonstrate their products. Activities include workshops on travel, home modifications, and more, as well as adaptive sports demos. The expo is held yearly in Atlanta, Boston, Chicago, Houston, Los Angeles, New York, and San Jose. Admission is FREE!
Special Needs Parenting Support Group
Support Group For Parents of Children With Attention Issues
13 Museum of Modern Art Create Ability: Full Spectrum: Exploring Color
Autism NJ Transition Conference
Autism New Jersey’s first conference focused exclusively on the transition to adulthood. This critical time in the life of a person with autism requires careful planning and preparation on the part of parents, caregivers and professionals. Navigating the changes from school to the adult service system is challenging. Speakers will present on a variety of legal, educational, vocational, social, and financial topics specifically addressing adolescence and the changes that come with the high school years and beyond.
Where: JCC of Central NJ, Scotch Plains, New Jersey More Info: email@example.com.
Asperger and High Functioning Autism Parent Support Group
Where: Washington, DC More Info: www.disabilitypolicyseminar.org
Special Needs Parenting Support Group
Where: Hilton Hotel, Baltimore, MD More Info: www.ojotc.org or 973.777.6549
ARC Disability Policy Seminar
Advance the grassroots movement for people with intellectual and developmental disabilities. Come together with other advocates, learn about the issues, and speak with your elected officials about what is important to you.
Support Group For Parents of Children With Attention Issues
Address: CHAI Building, 5809 Park Heights Avenue, Baltimore MD Time: 7:30-9:00 pm More Info: Gila at firstname.lastname@example.org 410.843.7588
A support groups which allows parents to voice their concerns and share ideas and strategies. Registration requested.
Autism Symposium hosted by Children’s Specialized Hospital
Where: Pines Manor, 2085 State Rt. 27, Edison, New Jersey Time: 8:15am-4:30pm More Info: Lsavatore@childrens-specialized.org
This full day symposium for families and professionals will provide current perspectives from individuals diagnosed with autism spectrum disorder, family members and professionals, related to daily living, education, social interactions, recreation, and employment. March 2014
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Building Blocks Service Marketplace
formerly known as
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THEAPPLICATIONS ONLY SCHOOL OF BEING ITSGKIND CURRENTLY R ACCEPTED FOR 2014-2015 SCHOOL YEAR WITH A PRE-1A CLASS 2884 NOSTRAND AVENUE · BROOKLYN, NY 11229 APPLICATIONS 718.951.3650
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Kulanu Academy 620 Central Ave, Cedarhurst, NY 11516 516-565-3083 ext. 140 www.kulanukids.org Kulanu runs a school program for children & young adults ages 12-21 with special needs. They also run Adult Supportive Employment program and a Parent Resource Center. Also, Camp Discovery, Respite Programs and after school weekend programs. Otsar Family Services 2334 West 13th St., Brooklyn New York 11223 718-946-7301 • www.otsar.org Provides assistance with IEP meetings and impartial hearings in NYC. Tafkid 718-252-2236 Tafkid assists families whose children have been diagnosed with a variety of disabilities and special needs. Teach NYS High School Academic Resource Center 212-566-5400 ext. 13 www.ou-teachnys-educationresources.org Teach NYS helps access services, provides guidance in navigating the system and works with your child’s school. United Cerebral Palsy of New York City 80 Maiden Lane, 8th Floor, New York, NY 10038 877-827-2666 or 212-683-6700 www.ucpnyc.org United Cerebral Palsy of New York City (UCP of NYC) is a leading nonprofit provider of direct services, technology, and advocacy to children and adults with cerebral palsy and other disabilities. They offer more than 75 comprehensive programs including medical, clinical, educational, technological, residential, and habilitative services to over 14,000 individuals and families annually. Their mission is to create opportunities for people with disabilities to lead independent and fulfilling lives.
Careers in Special Needs TTI – Testing & Training International 877-RING.TTI • 718-376-0974 ext. 11 www.testingandtraining.com Get your Master’s in Special Ed. Call today for your reg. packet!
Community Support Challenge Early Intervention Center Exec. Office: 649 39th Street Brooklyn, NY 11232 Queens Office: 72-38 Main Street Flushing, NY 11367 Staten Island Office: 1911 Richmond Ave. Staten Island, NY 10314 718-851-3300 • challenge-ei.com Home, Center & Community Based Early Intervention Evaluations / Services for eligible children at no cost to families. Initial & ongoing service coordination, Home/Center based ABA program for children diagnosed w/ Autism Spectrum Disorder, Speech, Feeding, Occupational & Physical Therapy, Special Education, Vision, Nutrition, Parent Training, Assistive Technology Svces, Support groups, parent workshops. NYS DOH, Bureau of EI approved contractor. Highest quality EIP Services for over 25 years. Hand in Hand Family Services 390 Kings Hwy, F11, Brooklyn, NY 11223 718-336-6073 • www.hihfs.org Works to help people with developmental disabilities achieve productive and fulfilling lives by creating opportunities and supporting them in ways that allow them to access the supports and services they want and need. Kulanu Academy 620 Central Ave, Cedarhurst, NY 11516 516-565-3083 ext. 140 www.kulanukids.org Kulanu runs a school program for children & young adults ages 12-21 with special needs. They also run Adult Supportive Employment program and a Parent Resource Center. Also, Camp Discovery, Respite Programs and after school weekend programs.
Building Blocks Service Marketplace OHEL Children’s Home & Family Services 4510 16th Avenue Brooklyn, NY 11204 800-603-OHEL www.ohelfamily.org From trauma services to advice for a child with ADHD, marital counseling to support to an individual with a developmental or psychiatric disability, access the full range of OHEL services.
Jumpstart Early Intervention 3914 15th Ave, Brooklyn, NY 11218 718-853-9700 womensleague.org/jumpstart Provides Early Intervention evaluations and therapy services for children birth to three years old, experiencing mild to severe developmental delays, speech and language impairment, ADD/ADHD, hearing impairment, multiply handicapped etc.
United Cerebral Palsy of New York City 80 Maiden Lane, 8th Floor, New York, NY 10038 877-827-2666 or 212-683-6700 www.ucpnyc.org United Cerebral Palsy of New York City (UCP of NYC) is a leading nonprofit provider of direct services, technology, and advocacy to children and adults with cerebral palsy and other disabilities. They offer more than 75 comprehensive programs including medical, clinical, educational, technological, residential, and habilitative services to over 14,000 individuals and families annually. Their mission is to create opportunities for people with disabilities to lead independent and fulfilling lives.
OHEL Children’s Home & Family Services 4510 16th Avenue Brooklyn, NY 11204 800-603-OHEL www.ohelfamily.org From trauma services to advice for a child with ADHD, marital counseling to support to an individual with a developmental or psychiatric disability, access the full range of OHEL services.
Early Intervention Programs Challenge Early Intervention Center Exec. Office: 649 39th St, Brooklyn, NY 11232 Queens Office: 72-38 Main St, Flushing, NY 11367 Staten Island Office: 1911 Richmond Ave, Staten Island, NY 10314 718-851-3300 • challenge-ei.com Home, Center & Community Based Early Intervention Evaluations / Services for eligible children at no cost to families. Initial & ongoing service coordination, Home/Center based ABA program for children diagnosed w/ Autism Spectrum Disorder, Speech, Feeding, Occupational & Physical Therapy, Special Education, Vision, Nutrition, Parent Training, Assistive Technology Svces, Support groups, parent workshops. NYS DOH, Bureau of EI approved contractor. Highest quality EIP Services for over 25 years.
YOUR CHILD is struggling in school. YOU want him to be included. WE PLAN FOR IT – not only for today, but for his future.
(Job Training, Placement…)
Creative Business Resources 1556 38th St, Brooklyn, NY 11218 718-853-0900 www.womensleague.org/cbr Provides pre-employment classes, job development and training and ongoing coaching for individuals with learning or developmental disabilities. Kulanu Academy 620 Central Ave, Cedarhurst, NY 11516 516-565-3083 ext. 140 www.kulanukids.org Adult Supportive Employment program. See other categories for other services. OHEL Children’s Home & Family Services 4510 16th Avenue Brooklyn, NY 11204 800-603-OHEL • www.ohelfamily.org From trauma services to advice for a child with ADHD, marital counseling to support to an individual with a developmental or psychiatric disability, access the full range of OHEL services. YAI Network 460 West 34th Street, New York, NY 10001 866-2-YAI-LINK - www.yai.org Home and Center services. ABA, Floor Time, Sensory Integration.
INCLUSION by DESIGN ™ Only at 888-993-1552 www.sinaischools.org/nyc
Special education uniquely integrated within Jewish Day Schools • Individualization • Educational excellence • Meeting each child’s educational, social, and emotional needs Elementary Schools • High School • Adult Day Habilitation
SERVING THE GREATER METROPOLITAN AREA
Building Blocks Service Marketplace Events Abilities Expo www.abilitiesexpo.com provides demonstrations and information pertaining to physical handicaps, including the latest products and assistance animals. Events throughout the US.
Medicaid Waiver & Other Programs (Including Day-Hab, Comm-Hab, Respite…)
Hand in Hand Family Services 390 Kings Hwy, F11, Brooklyn, NY 11223 718-336-6073 • www.hihfs.org Works to help people with developmental disabilities achieve productive and fulfilling lives by creating opportunities and supporting them in ways that allow them to access the supports and services they want and need. HASC School Age Program 6220 14th Ave, Brooklyn, New York 11230 718-331-1624 www.hasc.net/camp No-fee after school program 4 days a week for male & female ages 5-21, mixed groups, handicap accessible, transportation provided, Kosher food provided, take children not toilet trained. JBFCS/Mishkon 1358 56th St, Brooklyn, NY 11219 718-851-7100 • jbfcs.org Group homes (IRA and ICF) in the Boro Park & Midwood communities. They offer Comm-Hab, Medcaid Service Coordination Respite, Parent Training & camp reimbursement. National Jewish Council for Disabilities (NJCD) / Yachad 11 Broadway, 13th Fl. NY, NY 10004 212-613-8229 • www.njcd.org Medicaid Waiver, respite, overnight respite, Sunday program and Shabbatons.
OHEL Children’s Home & Family Services 4510 16th Avenue Brooklyn, NY 11204 800-603-OHEL www.ohelfamily.org From trauma services to advice for a child with ADHD, marital counseling to support to an individual with a developmental or psychiatric disability, access the full range of OHEL services. Otsar Family Services 2334 West 13th St., Brooklyn New York 11223 718-946-7301 • www.otsar.org A Medicaid Waiver provider that offers parent support groups, respite, overnight respite, Sunday program and dayhab, ages 5-21. Special Care for Families and Children’s Services 1421 East 2nd St, Brooklyn, New York 11230 718-252-3365 Medicaid Waiver, Respite, Evaluation to determine OPWDD eligibility. Help with new Front Door Initiative. Women’s League Community Residences, Inc. 1556 38th St, Brooklyn, NY 11218 718-853-0900 www.womensleague.org Provides Medicaid Waiver, Community Habilitation & Respite for individuals with developmental and intellectual disabilities living in the community. United Cerebral Palsy of New York City 80 Maiden Lane, 8th Floor, New York, NY 10038 877-827-2666 or 212-683-6700 www.ucpnyc.org United Cerebral Palsy of New York City (UCP of NYC) is a leading nonprofit provider of direct services, technology, and advocacy to children and adults with cerebral palsy and otherdisabilities. They offer more than 75 comprehensive programs including medical, clinical, educational, technological, residential, and habilitative services to over 14,000
YAI Network 460 West 34th Street New York, NY 10001 (866) 2-YAI-LINK - www.yai.org Center-based, DayHab Without Walls, Handicap Accessible, Transportation Provided, Vocational services offered. IRA’s, Supportive Apartments. Medicaid Waiver, Family Support Services for parents & siblings, Respite, Overnight Respite, Sunday Program for all ages. Many other programs. See other categories for more Information.
United Cerebral Palsy of New York City 80 Maiden Lane, 8th Floor, New York, NY 10038 877-827-2666 or 212-683-6700 www.ucpnyc.org United Cerebral Palsy of New York City (UCP of NYC) is a leading nonprofit provider of direct services, technology, and advocacy to children and adults with cerebral palsy and other disabilities. They offer more than 75 comprehensive programs including medical, clinical, educational, technological, residential, and habilitative services to over 14,000 individuals and families annually. Their mission is to create opportunities for people with disabilities to lead independent and fulfilling lives.
individuals and families annually. Their mission is to create opportunities for people with disabilities to lead independent and fulfilling lives.
Beineinu-Connecting Parents of Children with Special Needs 48 West Maple Avenue Monsey, New York 10952 347-743-4900 www.Beineinu.org Parent Matching, Internet research for medical information for internet-free families, Translation of medical information into Hebrew, Zichron Yehuda Equipment Exchange, Growing International database of Resources, Information of Interest to those dealing with various special needs, Library of Chizuk and Inspirational articles, pictures and videos. OHEL Children’s Home & Family Services 4510 16th Avenue Brooklyn, NY 11204 800-603-OHEL www.ohelfamily.org From trauma services to advice for a child with ADHD, marital counseling to support to an individual with a developmental or psychiatric disability, access the full range of OHEL services.
Adaptive Clothing Showroom 877-222-1055 AdaptiveClothingShowroom.com Large selection of clothing and accessories for special needs children and adults. RJ Cooper 1-800-RJCooper www.RJCooper.com iPad “stuff” specifically for special needs. Carry cases, wheelchair mounts, apps, keyboards, switches/interfaces, and more! Speech Pathology Associates, LLC 207-741-2443 www.chewytubes.com Therapro 225 Arlington Street Framingham, MA 01702 800-257-5376 www.therapro.com Large online store with thousands of items for parents and therapists. (Personal favorite of Building Blocks Magazine staff – Ed)
JP AD: 96
Building Blocks Service Marketplace Schools
(Including CPSE & CSE Providers)
HASC School Age Program 6220 14th Ave, Brooklyn, New York 11230 718-331-1624 School for ages 5-21. Serving those with moderate to severe developmental delays, Autism/PDD, multiply handicapped. Provides ABA, Carbone, OT, PT, Speech, Counseling, Vision, Hearing, Medically Frail, Nurse State Approved, After School Program, Kosher Breakfast and Lunch, Transportation provided through the Board of Education IVDU Elementary School for Girls 1277 East 14th St. Brooklyn, NY 718-758-2999 • www.njcd.org A school for children with learning disabilities, speech and language delays, ADD and ADHD attending Kindergarten- 5th grade. Provides OT, PT and SEIT. IVDU Upper School Girls Division 1277 East 14th St. Brooklyn, NY 718-677-4279 • www.njcd.org A school for girls with learning disabilities, speech and language delays, ADD and ADHD, ages 13-21. Provides OT, speech and vocational training. IVDU Upper School Boys Division 1305 Coney Island Ave., Brooklyn, NY 718-372-7203 • www.njcd.org A school for boys with learning disabilities, speech and language delays, ADD and ADHD, ages 13-21. Provides OT, speech and vocational training. Kew Gardens SEP 159-16 Union Turnpike, Fresh Meadows, NY 11366 718-263-KIDS (5437) Serves ages 3-5 (CPSE). Provides OT, PT, Special Ed, SLP, SEIT & Counseling. Assists with all steps of the process. Kulanu Academy 620 Central Ave, Cedarhurst, NY 11516 516-565-3083 ext. 140 • www.kulanukids.org Kulanu runs a school program for children & young adults ages 12-21 with special needs. They also run Adult Supportive Employment program and a Parent Resource Center. Also, Camp Discovery, Respite Programs and after school weekend programs. National Jewish Council for Disabilities (NJCD) / Yachad 11 Broadway, 13th fl. NY, NY 10004 212-613-8229 • www.njcd.org A center-based program, which will also
send providers to schools for individuals Pleasewith re-size to dimensions:2 3/4 W x 3 1/2 H autism, speech and language delays, hearing impairments, and ADD/ADHD. Ohr Dovid formerlyWelcome known as Haor tothe The ShefaWelcome School! to The Shefa School! Beacon School 2884 Nostrand Avenue, Brooklyn, NY 11229 t h e 718-951-3650 Welcome to The Shefa School! A Yeshiva servicing boys with social, behavioral and learning challenges. Ages 5-13. s tc hh e o o l Small self-contained classrooms, intensive behavior modification, Orton Gillingham reading program. school A New K-8 Jewish Day School A New K-8 Jewish Day School for Children with Language-Based Learning Disabilities Pathway The Language-Based School for Children with Language-Based 3300 Kings Highway, Brooklyn, NY 11234 Opening September 2014 for students in 2nd-5th Grades Learning Disabilities 718-887-6030 • pathwaystudycenter.org A New K-8 Jewish Day School Applications available now at www.shefaschool.org Individual instruction using the Orton JP AD: 103 for Children with Language-Based Learning Disabilities Opening September 2014 Gillingham & other multi-sensory methods. Ilana Ruskay-Kidd, Head of School For children with dyslexia, auditory and for2014 students in 2nd-5th Grades Opening September for students in 2nd-5th Grades related issues. Separate divisions for boys and Applications available now at Applications available now at www.shefaschool.org girls. Ps’s accepted. www.shefaschool.org
Ptach 1689 East 5th Street, Brooklyn, NY 11230 718-854-8600
Ilana Ruskay-Kidd, Head of School
The Shefa School 180 Amsterdam Avenue, New York NY 10023 212-284-6627 • www.shefaschool.org K-8 Jewish Day School for children with language-based learning disabilities. Sinai Schools 1485 Teaneck Rd, Teaneck, NJ 888-993-1552 • www.sinaischools.org/newyorkcity Various schools in New Jersey which provide special education integrated within Jewish day schools in the Greater Metropolitan area. Serving individuals with mild to severe developmental delays, ADD, ADHD and other challenges and delays. United Cerebral Palsy of New York City 80 Maiden Lane, 8th Floor, New York, NY 10038 877-827-2666 or 212-683-6700 www.ucpnyc.org United Cerebral Palsy of New York City (UCP of NYC) is a leading nonprofit provider of direct services, technology, and advocacy to children and adults with cerebral palsy and other disabilities. They offer more than 75 comprehensive programs including medical, clinical, educational, technological, residential, and habilitative services to over 14,000 individuals and families annually. Their mission is to create opportunities for people with disabilities to lead independent and fulfilling lives.
Serena Wieder, Ph.D.
CLINICAL PSYCHOLOGIST Co-Creator of the DIR Model
Is pleased to announce the opening of her New York practice for Autistic Spectrum, Sensory Processing and related emotional and learning disorders at all ages. Co-Author of The Child with Special Needs, Engaging Autism and Visual Spatial Portals to Thinking, Feeling & Movement
575 West End Ave (88th Street) Ground Floor A New York, New York 10024 Phone: 240-423-3673 E-Mail: email@example.com March 2014
Building Blocks Service Marketplace YAI Network 460 West 34th Street, New York, NY 10001 866-2-YAI-LINK • www.yai.org YAI Network provides many services including SEIT, OT, PT, Speech, Play therapy/ counseling, ABA, Floor Time, Sensory integration. They service a population of Mild-severe developmental delays, Autism/ PDD, Speech & Language impaired, Learning Disabled, ADD/ADHD, Multiply handicapped. All therapies for children and adults of all ages.
Summer Camps & Extracurricular Programs
(Inc. Sunday & After School Programs)
Camp Ruach Hachaim 266 Penn Street, Brooklyn, New York 11211 718-963-0090 • www.campruachhachaim.org 8 weeks Sleep-Away camp for men, for ages 7-30. Serving individuals with mild to moderate to severe developmental delays, Autism/PDD, Down Syndrome, Speech & Language impaired, Learning disabled, ADD/ ADHD, Hearing Impaired.
assists families whose children have been diagnosed with a variety of disabilities and special needs.
Services provided by TAFKID include:
D Family Support Services & Information D Educational Advocacy D Individual Case Consultation D Referrals to Doctors, Therapists, Schools and Government Programs D Parent Matching D Family Recreation Programs D Parent Training and Meetings D Guest Lecturers D Community Sensitivity and Training D Informational Publications D Pediatric Equipment Lending Program D Tape/Video Lending
is a not-for-profit organization services are free of charge to all families. For more information call TAFKID at (718) 252-2236 or e-mail: firstname.lastname@example.org
Kulanu Academy 620 Central Ave, Cedarhurst, NY 11516 516-565-3083 ext. 140 • www.kulanukids.org Camp Discovery, Respite Programs and after school weekend programs. See other categories for other services. National Jewish Council for Disabilities (NJCD) / Yachad 11 Broadway, 13th fl. NY, NY 10004 212-613-8229 • www.njcd.org Various sleepaway camps for individuals with mild-severe developmental delays, autism/ PDD, speech and language delays, hearing impaired, learning disabled and ADD/ADHD in many areas, including Camp Chaveirim, Camp Kesher, Camp Shoshanim, Camp Lavi, Camp Mesorah and Camp Morasha. OHEL Children’s Home & Family Services 4510 16th Avenue, Brooklyn, NY 11204 800-603-OHEL • www.ohelfamily.org From trauma services to advice for a child with ADHD, marital counseling to support to an individual with a developmental or psychiatric disability, access the full range of OHEL services. Otsar Family Services 2334 West 13th St., Brooklyn New York 11223 718-946-7301 • www.otsar.org A day camp for individuals with mild to
severe developmental delays, autism and PDD, ages 5-15. United Cerebral Palsy of New York City 80 Maiden Lane, 8th Floor, New York, NY 10038 877-827-2666 or 212-683-6700 www.ucpnyc.org United Cerebral Palsy of New York City (UCP of NYC) is a leading nonprofit provider of direct services, technology, and advocacy to children and adults with cerebral palsy and other disabilities. They offer more than 75 comprehensive programs including medical, clinical, educational, technological, residential, and habilitative services to over 14,000 individuals and families annually. Their mission is to create opportunities for people with disabilities to lead independent and fulfilling lives. YAI Network 460 West 34th Street, New York, NY 10001 866-2-YAI-LINK • www.yai.org Provides Day camp & Sleep-away camp Sleep away camp in Claryville, NY in the Catskills; day camp in Rockland County Male & Female, separate sleeping quarters, mixed activities. Serves a population with mild-severe developmental delays, Autism/ PDD, Speech & Language impaired, Learning Disabled, ADD/ADHD, Multiply handicapped. Kosher food provided at sleep away camp.
Support Groups Challenge Early Intervention Center Exec. Office: 649 39th St, Brooklyn, NY 11232 Queens Office: 72-38 Main St, Flushing, NY 11367 Staten Island Office: 1911 Richmond Ave, Staten Island, NY 10314 718-851-3300 • challenge-ei.com Support groups, parent workshops. See other categories for other services. Kulanu Academy 620 Central Ave, Cedarhurst, NY 11516 516-565-3083 ext. 140 • www.kulanukids.org Parent Resource Center. See other categories for other services. OHEL Children’s Home & Family Services 4510 16th Avenue • Brooklyn, NY 11204 800-603-OHEL • www.ohelfamily.org From trauma services to advice for a child with ADHD, marital counseling to support
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to an individual with a developmental or psychiatric disability, access the full range of OHEL services. Ohel Sibshops 718-686-3491 (chayaleat) www.ohelfamily.org/sibshops Monthly support groups for siblings of individuals with special needs. Separate boy and girl groups. United Cerebral Palsy of New York City 80 Maiden Lane, 8th Floor, New York, NY 10038 877-827-2666 or 212-683-6700 www.ucpnyc.org United Cerebral Palsy of New York City (UCP of NYC) is a leading nonprofit provider of direct services, technology, and advocacy to children and adults with cerebral palsy and other disabilities. They offer more than 75 comprehensive programs including medical, clinical, educational, technological, residential, and habilitative services to over 14,000 individuals and families annually. Their mission is to create opportunities for people with disabilities to lead independent and fulfilling lives.
Therapy & Evaluation Centers The Ability Center 3521 Avenue S, Brooklyn, New York 718-336-3832 Theabilitycenter.net Provides Speech therapy, OT, PT, Sensory Integration, MEDEK. Accepts RSA’s, Handicapped Accessible. Challenge Early Intervention Center Exec. Office: 649 39th St, Brooklyn, NY 11232 Queens Office: 72-38 Main St, Flushing, NY 11367 Staten Island Office: 1911 Richmond Ave, Staten Island, NY 10314 718-851-3300 challenge-ei.com Home, Center & Community Based Early Intervention Evaluations / Services for eligible children at no cost to families. Initial & ongoing service coordination, Home/Center based ABA program for children diagnosed w/ Autism Spectrum Disorder, Speech, Feeding, Occupational & Physical Therapy, Special Education, Vision, Nutrition, Parent Training,
Assistive Technology Svces, Support groups, parent workshops. NYS DOH, Bureau of EI approved contractor. Highest quality EIP Services for over 25 years. Hand in Hand Family Services 390 Kings Hwy, F11, Brooklyn, NY 11223 718-336-6073 • www.hihfs.org Works to help people with developmental disabilities achieve productive and fulfilling lives by creating opportunities and supporting them in ways that allow them to access the supports and services they want and need. OHEL Children’s Home & Family Services 4510 16th Avenue Brooklyn, NY 11204 800-603-OHEL www.ohelfamily.org From trauma services to advice for a child with ADHD, marital counseling to support to an individual with a developmental or psychiatric disability, access the full range of OHEL services. Paul Stadler, MS OTRL NDT (INPP) 347-247-6835 • www.paulstadler.net Evaluations for ADD, Dyslexia, Aspergers Syndrome, Reading Issues and other challenges using the INPP Method.
For a full list of conditions we treat,visit www.2ndNatureAcu.com Email: AcupuncturEsther@gmail.com
Esther Hornstein L.Ac., Dipl.
SUNDAY RECREATIONAL PROGRAM Openings available JP AD: 106in our Sunday Program for Manhattan & Queens families.
Call 718-946-7301 x 205
UNITED UNITED CEREBRAL CEREBRAL PALSY PALSY OF OF NEW NEW YORK YORK CITY CITY
UNITED CEREBRAL PALSY OF NEW YORK CITY UNIVERSAL PRE-K PROGRAM UNIVERSAL UNIVERSAL PRE-K PRE-K PROGRAM PROGRAM
ENROLLING NOW IN ENROLLING NOW IN ENROLLING NOW IN BROOKLYN, MANHATTAN, STATEN ISLAND & THE BRONX BROOKLYN, MANHATTAN, BROOKLYN, MANHATTAN, STATEN STATEN ISLAND ISLAND & & THE THE BRONX BRONX
Serena Wieder, Ph.D. 575 West End Avenue (88th Street) Ground Floor A UNITED CEREBRAL PALSY OF NEW YORK CITY New York, NY 10024 PRE-K for for 44 year year olds olds PRE-K 240-423-3673 UNIVERSAL PRE-K PROGRAM PRE-K for 4 year olds Serena is a clinical psychologist and the co-c ENROLLING NOW IN OurUniversal Universal Pre-K program offersBRONX familiesaaFREE, FREE, Creator of the DIR Model. New practice MANHATTAN, BROOKLYN, STATEN ISLAND & offers THE Our Pre-K program families Our Universal Pre-K program offers families a FREE, high quality, family friendly learning environment for Autistic Spectrum, Sensory Processing high family friendly learning high quality, quality, family learningenvironment environment for children of friendly all developmental levels. and related disorders. for children ofof all developmental levels. for children all developmental levels. See her article in this magazine on page 20. • NYS certified teachers and teaching assistants • •• NYS teachers and assistants •• NYS certified teachers and teaching teaching assistants •certified Technology enhanced classrooms • United Cerebral Palsy of New York City PRE-K for 4 year olds •• Technology classrooms • Close to enhanced public transportation • •• 80 Maiden Lane, 8th Floor, Technology enhanced classrooms New York, NY 10038 •• Close toto public transportation •• contact Close public transportation For more information please Our Universal Pre-K program offers families a FREE, 877-827-2666 or 212-683-6700 PROJECT CONNECT For more information please contact high quality, family friendly learning environment www.ucpnyc.org For more 1.877.827.2666 information please contact email@example.com PROJECT CONNECT for (UCP children of all developmental levels. United Cerebral Palsy of New York City PROJECT CONNECT 1.877.827.2666 www.ucpnyc.org 1.877.827.2666 of NYC) is a leading nonprofit provider of firstname.lastname@example.org email@example.com • NYS certified assistants • direct services, technology, and advocacy to teachers and teachingwww.ucpnyc.org www.ucpnyc.org children and adults with cerebral palsy and • Technology enhanced classrooms • other disabilities. They offer more than 75 • Close to public transportation • comprehensive programs including medical, clinical, educational, technological, residential, For more information please contact and habilitative services to over 14,000 individPROJECT CONNECT 1.877.827.2666 uals and families annually. Their mission is to firstname.lastname@example.org create opportunities for people with disabilities www.ucpnyc.org to lead independent and fulfilling lives.
RECRUITMENT After-School Hours
Positions available for Community Hab trainers with experience. Well paying jobs with special needs kids. P/T late afternoon hrs Sun-Thurs.
Email resume to Shanie@Otsar.org
To advertise in this section of Building Blocks Magazine, please contact David at email@example.com or 718.330.1100x372.
JBFCS/Mishkon is looking for full time
to work Full time in our group homes for individuals with Developmental Disabilities. Experience preferred passion for the population required. E-mail resume to firstname.lastname@example.org 52
RECRUITMENT Want to make a huge difference - in someone else’s life? - in your own life? BECOME A VOLUNTEER! Spend just one hour per week with a child or adult with disabilities.
Boro Park/Flatbush group home settings. Read, learn, play a game/music, walk together, be a friend, share a hobby, etc.
Male and Female volunteers welcome, ages 16 and up.
Contact Shaindy Womens League Community Residences 718-853-0900 ext. 308
Positions available for E.I., preschool & school-aged children: SLPs, OTs, PTs Licensed Psychologists Special Educators—ABA Service Coordinators
$100 Sign-on bonus!
BILINGUAL A PLUS Geographical Areas: Nassau, Suffolk, Queens, Brooklyn
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Special Needs Pacesetters
New Resources for Dealing with Autism Based on an Interview with Dr. Joshua Weinstein By Yaakov Kornreich
he development of Jewish communitybased organizations dedicated specifically to dealing with the challenges of autism is a relatively recent phenomenon. Dr. Joshua Weinstein founded the Shema Kolainu - Hear Our Voices (SK-HOV) program in September, 1998, after spending decades in education as a public school teacher, assistant principal, yeshiva principal, and the Executive Director of the Williamsburg Y. The SK-HOV program was a response to many requests by religious parents of children with autism who wanted an alternative to public school programs based upon the most evidence-based approach, ABA (Applied Behavior Analysis). Structured on the teachings of Dr. Douglas Greer of the Columbia University Teachers College, SK-HOV employs scientifically proven CABAS teaching techniques. It enhances development and self-direction to improve reading, communication, academic and social skills in the child. It also develops adaptive living skills, such as personal hygiene and making their own bed. Shema Kolainu was the first independent Jewish school for children with autism. Launched in September, 1998, by 2000, Shema Kolainu had received New York State approval for its school age and pre-school programs. Its current facility, located in Boro Park, hosts 3 preschool classes and 4 school-age classes serving a total of 60 children between the ages of 3 and 11. Shema Kolainu provides individualized treatment for each of its students, including different specialized rooms such as a sensory gym, an adaptive daily living skills room, a grocery store, and augmentative communication. Shema Kolainu uses the most up to date technology tools available to ensure that the Verbal Behavior model used maximizes student potential on all levels. Its homebased program serves over 1,000 children with autism or other disabilities in the 5 boros of New York City and Westchester County, between the ages of 18 months and 21 years.
The supervisory staff provides an intensive in-service training program for the educational staff, which includes many board certified behavior analysts. They are kept current in state of the art techniques and pursue degrees at the Masters and Doctoral levels. The school receives NYC council funding that sponsors public workshops for educators and parents on such topics as biomedical intervention for those on the autism spectrum, sensory integration therapy and autism intervention on multiple levels.
Dr. Weinstein says that one of the greatest challenges facing the autism community today is the more than 50,000 autistic high school age students who have no place in today’s workplace. But with proper training, they can become highly efficient workers because of their superior ability to focus on their tasks at hand. He is also working with autistic self-advocates such as Dr. Stephen M. Shore, of Adelphi University, who seek acceptance of their autism not as a disorder, but rather as a distinctive lifestyle of its own. They provide a valuable insider’s view of the needs of children with autism. Shema Kolainu’s new legal services department assists families to obtain services from the government for their children with autism which is their right under law. In 2004, Dr. Weinstein launched the International Center for Autism Research and Education (ICare4Autism.org). It promotes research,
autism awareness, materials for ABA teacher training, conferences in cooperation with institutions and governments around the world. It also features a global, state-of-the-art online database known as ICAP for Autism. The web site also provides autism-related news, webinars and on-line streaming coverage of major autism conferences. Working with contacts in Great Britain, South Korea, Singapore, South Africa, Eastern Europe and Pakistan, Icare4autism is developing a model school, programs for teaching music and art, and providing ABA training for principals, teachers and government officials. Its apolitical goal is to share breakthrough innovations with autism organizations around the world which will replicate them under their own names. ICare4Autism is working with the U.N.’s World Health Organization (WHO), to develop the largest online e-Center for Autism and with various universities to develop new degree-bearing autism education programs. It is also setting up an international on-line university. It has also set up an international advisory committee whose members are distinguished autism experts from universities around the world. ICare4Autism is organizing a 3-day professional conference at the Hotel Pennsylvania in NYC beginning on June 30, to explore replicable workforce practices for individuals with autism, the latest medical, prenatal research and educational research, and guidelines for starting high school programs for students with autism. So far, research has not yet revealed the underlying biological mechanism behind autism. Evidence points to multiple causes. Genetics, potentially involving hundreds of different genes, contributes to about 20% of the cases. Other suspected risk factors include environmental and food causes, such as contaminants in water systems and diets containing gluten, birth complications and advanced paternal age. There is a great deal we still do not understand, but thanks to research, the dark ages of autism are over. For parents, a diagnosis of autism is still a disorientating and frustrating experience. No instant cures are available, but there is a great deal that can be done to give autistic children a better quality of life and real hope for a better future. Dr. Weinstein believes that more research, better educational techniques and training pediatricians to diagnose autism at younger ages are the keys to better outcomes. Joshua Weinstein has been an educator and administrator for over four decades. He holds a Ph.D., two Masters Degrees in Educational Administration and Supervision and an MBA in Executive Administration. He has been the CEO in healthcare, social services, and business corporations. He’s the president and founder of Shema Kolainu-Hear Our Voices and ICare4Autism. He can be reached via email at email@example.com.
June 2014 A Supplement of the
A SPECIAL NEEDS MAGAZINE
Join Us for Our June 2014 issue
: Featuring er ༇ Summ Planning g stifyin ༇ Demy ts Assesmen ase ༇ The C Against eds Special Ne
BONUS PRODUCT SECTION
s â€™ d a h YInclausicve Summer
s m a r g o r P Camp
cialization, Fostering So and Fun for e c n e d n e p e Ind s Special Need h it w ls a u id indiv
Children and young adults ages 8-21 Camp activities with typically developing campers
TRAVEL/Vacation PROGRAMs young adults ages 17-45 Participants vacation and tour the US and Israel
Children ages 9-15 Campers are placed within a mainstream bunk
young adults ages 22-30 Participants enjoy job satisfaction and develop life skills with job coaches
For more information contact: firstname.lastname@example.org | 212.613.8369 www.yachad.org/summerprograms
Yachad Programs Take Place In:
Yachad Is an agencY of The orThodox UnIon