The magazine for the American Society for Deaf Children.
FALL 2011 The ENDEAVOR A Publication for Families and Professionals Committed to Children Who Are Deaf and Hard of Hearing Deaf Plus: Giving Kids a Chance INSIDE THIS ISSUE: Together We Aim High Autism in Deaf Children From “Horrible” to “Great”: Holidays p. 9 p. 33 p. 43 www.deafchildren.org THE ENDEAVOR American Society for Deaf Children #2047 800 Florida Avenue, NE Washington, D.C. 20002-3695 Fax: (410) 795-0965 Toll-Free Help Line: (800) 942-ASDC (2732) email@example.com www.deafchildren.org A Look Inside EVERY ISSUE ASDC Board 2 A Note from the Editor 4 President’s Column 6 Websites of Interest 53 Membership Form 56 FEATURES Together, We Aim High 9 The Endeavor Staff Editor Tami Hossler firstname.lastname@example.org From Birth to the Summer Academy 13 Cultural Ecology and Deaf Culture 20 Personalized Learning: An Alternative Education 22 Managing Editor Anita Farb 2011 ASDC Conference Photographs 29 Alleviating the Fear of the Unknown 30 What is Deaf Plus? 32 Autism in Deaf Children 33 History of Deaf Autism America 35 My Deaf Son With Autism 36 The Difficult Road to a Good Education 39 Smooth Transitions to Independence— Not Without Effort 40 From “Horrible” to “Great”: Holidays 43 Developmental Delays: Where to Start? 48 Raising RJ: A Deaf Mom and a Blind-Hard of Hearing Son Share in the Dance of Life 51 Publication Services T.S. Writing Services, LLC www.tswriting.com ASDC STAFF Director of Advocacy Cheri Dowling email@example.com © 2011 ASDC. The Endeavor is ASDC’s news magazine published three times a year. Published articles and advertisements are the personal expressions of their authors and do not necessarily represent the views of ASDC. The Endeavor is distributed free of charge to ASDC members. ADVERTISING For advertising information, contact firstname.lastname@example.org. ASDC is a 501(c)(3) public benefit corporation. Going Green! Would you like to help save trees and costs by receiving an online version of The Endeavor instead of a hard copy? If so, send an e-mail to email@example.com. 1 ASDC BOARD Executive Council Board of Directors President Jodee Crace, M.A. Indianapolis, IN firstname.lastname@example.org Treasurer Timothy Frelich, M.A. Jessup, MD email@example.com Vice President Joe Finnegan, M.S., M.A., Ed.S. St. Augustine, FL firstname.lastname@example.org Executive Secretary Kristen DiPerri, Ed.D. Falls, PA email@example.com Members at Large Past President Beth Benedict, Ph.D. Germantown, MD beth.benedict@gallaudet. edu Peter Bailey, M.A. Framington, MA firstname.lastname@example.org Stefanie Ellis-Gonzales, M.A. Pleasanton, CA email@example.com Jeff Bravin, M.A. West Hartford, CT firstname.lastname@example.org Richard Flores St. Augustine, FL email@example.com Tom Dâ€™Angelo Frederick, MD firstname.lastname@example.org Robert Hill, M.A., M.Ed., Ed.S. Tucson, AZ email@example.com Carrie Davenport, M.A. Columbus, OH firstname.lastname@example.org John Egbert Ham Lake, MN email@example.com 2 Lisalee Egbert, Ph.D. Sacramento, CA legbert@saclink. csus.edu Tami Hossler, M.A. Miromar Lakes, FL firstname.lastname@example.org Erin Kane, Ph.D. Rochester, NY email@example.com Carolyne Paradiso, M.A. Sulphur, OK firstname.lastname@example.org Todd Reeves, J.D., M.S. Etna, PA email@example.com Tony Ronco, P.Eng. La Mesa, CA firstname.lastname@example.org Avonne Rutowski, M.A. Austin, TX avonne.rutowski@tsd. state.tx.us Council on Education of the Deaf Representatives Beth Benedict Cathy Rhoten www.deafchildren.org Welcome, New Board Members Peter Bailey is the associate executive director of The Learning Center for the Deaf (TLC) in Framingham, Mass. He has worked for several Deaf schools in his 23-year career. Prior to his current role, Peter served as TLC’s director of student life and worked for Communication Service for the Deaf in South Dakota and Texas as the state director. He serves on the Conference of Educational Administrators of Schools and Programs for the Deaf (CEASD) board. With a master’s degree in organizational management and leadership from Springfield College, he comes from a large Deaf family and has hearing sons ages 14 and 12. Born Deaf to Deaf parents, Avonne BrookerRutowski graduated with a bachelor’s degree in psychology from Gallaudet University, followed by a master’s degree in Deaf education at McDaniel College. She also earned an education specialist degree from the Gallaudet Leadership Institute. Avonne secured her first job as a preschool teacher at Texas School for the Deaf (TSD). She then became the elementary school principal and later was appointed Director of Instruction in 2006. With 20 years of experience in Deaf education, she is enjoying her first year as an outreach program specialist at TSD. Avonne is also the proud mother of two children: Alexandria, 13, who attends TSD, and Andrew, 7, who loves to declare himself a CODA. Avonne resides in Austin with husband Paul. Tom D’Angelo, a ZVRS business account executive, has worked in the telecommunications field for over 10 years. Born Deaf to a Deaf family, Tom attended public school and then transferred to Model Secondary School for the Deaf. A 1996 graduate of Gallaudet University, he obtained an MBA from Colorado Technical University in 2005. Tom has been very active with the National Literacy and Leadership Camp as its director, and is excited to be part of the ASDC board. He resides in Frederick, Md., with wife Cindy and their three children, who attend the Maryland School for the Deaf. Carrie Davenport is the Early Childhood Education Consultant for the Center for Outreach Services at the Ohio School for the Deaf (OSD). Her job involves providing technical support and resources to early childhood professionals throughout Ohio as well as coordinating conferences and workContinued on page 4 3 A Note from the Editor children with autism. In The summer of 2011 was this issue, you will find a busy time for ASDC. The ASDC conference at the several articles relating to issues surrounding autism. Maryland School for the Families who have deaf Deaf in June was a huge children with cognitive or success! This issue contains physical issues—or Deaf pictures from the conferTami Hossler with Plus—face many challengence on pages 28-29. You daughter Erica es. By highlighting some will continue to see your of their stories in this kids and maybe yourself issue, we are able to bring attention to pop up in future issues. While at the conference, I was what works, what doesn’t work, and lucky enough to meet some wonder- what needs to happen to “give these ful parents who have some amazing children a chance.” Regardless of the stories to tell. I hope to highlight some specific category children who are Deaf Plus fit into, their families need of them in upcoming issues. ASDC welcomes Deaf Autistic Amer- our support. Get ready for some rather lengthy ica as an organizational member. With Deaf Autistic America’s help, we can reading in this issue of The Endeavor. It reach out to families who have deaf will be well worth your time! New Board Members Continued from page 3 shops. She earned a bachelor’s degree in Deaf education from Bowling Green State University, a master’s degree in family-centered early education from Gallaudet University, and an educational specialist degree through the Gallaudet Leadership Institute. She serves on Ohio’s Help Me Grow Advisory Council, the Universal Newborn Hearing Screening subcommittee and the Ohio Hands & Voices board. Stefanie D. Ellis-Gonzales is the Deaf mother of three Deaf children, one of whom has autism. She graduated with a bachelor’s degree in psychology from Gallaudet University and received a master’s degree in social work from San Francisco State University. Employed at National University as a Deaf/Hard of Hearing consultant, she is dedicated to high standards in deaf education and passionate about raising awareness and furthering opportunities for deaf individuals with autism. She also co-founded Deaf Autism America (DAA). Her family resides in the San Francisco Bay Area. 4 www.deafchildren.org From the Past President A Few Words of Appreciation As you probably know, ASDC has a new president: Jodee Crace from Indiana. If you know her, you are as excited as I am! ASDC is definitely in good hands with Jodee, in addition to a very dedicated board; I could not ask for better board members. I am so fortunate to have worked with a board so dedicated to ASDC’s work in addition to having formed such wonderful friendships. During my four years Beth S. Benedict, Ph.D. as president, I always felt so rewarded by the work we did. As I step down, I look forward to staying actively involved with ASDC, and I hope you are enthusiastic about being active members as well. We can help by sharing ASDC’s goals with newly-identified families, encouraging them to join ASDC, and raising money for ASDC. To everyone at ASDC, thank you very much for adding so much to my life. I am not going to say goodbye, especially because I am still here! Jodee, a heartfelt congratulations and I know you will do us very proud! – Past President Beth S. Benedict Thank you, Beth! ASDC thanks Past President Beth Benedict for her steadfast commitment to ASDC! 5 President’s Column With ASDC, We Are Family tics deserve wholehearted respect and love for the person for who he or she is meant to be. With all these this comes a healthy family. The We Are Family song, particularly the everyone Jodee Crace can see we’re together as we walk on by line, is an inspiration for ASDC. In this issue, we’re excited to cele– Bernard Rodgers & Nile Rodgers; brate Deaf Plus. Such individuals are originally performed by Sister Sledge Deaf or Hard of Hearing and have an with added words in parentheses “extra” identity (or identities) that may lead to unique approaches molding the The above song fits in perfectly with child perfectly, like a warm and cozy this issue of The Endeavor. This issue blanket. Because of ASDC’s commitcelebrates ASDC’s successes of the ment to supporting families with Deaf past few months. For instance, ASDC’s and Hard of Hearing children, we want 2011 conference was hosted by the to also celebrate their journey within Maryland School for the Deaf last this diversity. June. Huge cheers and hands waving The ASDC board is excited to for the valuable partnership the ASDC announce its partnership with Deaf “village” brings in support of families Autism America (DAA), a specialwith Deaf and Hard of Hearing chil- interest group founded by Stefanie dren. Ellis-Gonzales and Rosanglea Jaech in The nature of our lives and our jour- hopes of raising awareness, resources, neys includes surprises, challenges, and advocacy. Learn more about DAA joy and opportunities to embrace the on page 35 and in ASDC’s monthly unexpected. Raising expectations e-mail blasts. Welcome to the ASDC through families’ togetherness and Family, DAA! Everyone can see we’re respect for each other’s differences is together as we walk on by. what ASDC is all about. Everyone can Finally, the ASDC board and family see we’re together as we walk on by. are grateful for Beth Benedict’s wonderThe word difference can also mean ful leadership as the ASDC president diversity. With diversity comes unique for the past four years. I have utmost characteristics. Unique characteris- respect for her skills and dedication to We are family I got all my sisters (and brothers and parents) with me We are family Get up everybody and sing (and sign) Everyone can see we’re together As we walk on by… 6 www.deafchildren.org ASDC board members at the 2011 ASDC conference in Frederick, Md. the family empowerment philosophy she demonstrates through her daily work and play. We are fortunate that she will continue with ASDC in the role of past president. Most importantly, we have a wonderful and diverse board that I am honored to work with. Everyone can see we’re together as we walk on by. It is the ASDC board’s goal to continue reaching out to more families. It is our dream that all families can sing/ sign a few more lines to the We are Family song: Living life is fun and we’ve just begun To get our share of the world’s delights (HIGH!) high hopes we have for the future And our goal’s in sight Enjoy the fall season and please do share your feedback, ideas, wishes and dreams with the ASDC board. ASDC’s Jeff Gelona Passes Away ASDC is saddened to announce the passing of ASDC board member Jeff Gelona of Ardmore, Okla. Jeff is survived by his wife Vicki, their sons Nick and Joshua, Whitney Brown and Seve Sanchez. The contributions that Jeff made to ASDC will never be forgotten, and he is greatly missed. 7 ASDC Biennial Conference Highlights Parents and families from all across the country gathered on June 22-26 at the Maryland School for the Deaf (MSD) in Frederick, Md., for the 22nd ASDC Biennial Conference. The conference was once again a huge success. Handwaves to MSD for being a great host! ASDC children and teens connected with old friends and made new friends during the conference. They were kept busy with all kinds of fun activities including team-building for teens, juggling, yoga, visual theatre, horseback riding, and games for very young participants. Families and parents had an array of incredible workshop choices presented by some of the top professionals in Deaf education and advocacy from around the nation. Renowned keynote speakers included Maryland State Superintendent of Schools Dr. Nancy S. Grasmick, Clinical Neuropsychologist/Associate Professor at NTID Dr. Peter Hauser, Indiana School for the Deaf Superintendent Dr. David Geeslin, and Maryland School for the Deaf Superintendent James Tucker. The distinguished speaker was Thomas Holcomb. ASDC is blessed to have such wonderful parents and professionals as part of its family. The ASDC conferences continue to be a key to building lifelong friendships and networks. A special thanks goes to the Holcomb Family Fund for providing essential and valuable family conference scholarships! The 2013 ASDC Conference will be hosted by the Arizona School for the Deaf and Blind. In the meantime, enjoy the conference highlights in this issue! Deaf Culture Our Way: Anecdotes from the Deaf Community By Roy K. Holcomb, Samuel K. Holcomb and Thomas K. Holcomb Written by Roy Holcomb and his sons Samuel and Thomas, this popular book has expanded sections providing a delightful look at Deaf culture, including Classic Humor, Our Unique Ways, New Technology, New Hazards, Bathroom Tales, Classic Hazards, Travel & Transportation, Dining Out, Deaf Consumers, Misunderstandings, Communication, Myths, Mainstreaming and more. The book is available from DawnSignPress at www.dawnsignpress.com. The proceeds from this book have been donated to ASDC and have provided scholarships for many families to attend the ASDC conferences over the years. 8 www.deafchildren.org Reflections from PSD Families Together, We Aim High By Tina Pakis, Brenda Wilford and Denise Tucker First, we at the Pennsylvania School for the Deaf (PSD) think the ASDC conference is the best thing since sliced bread. Since 2000, we have talked to our families and staff about the benefits of attending the ASDC conference and have supported the attendance of between 5 to 12 families at the conferences in Pittsburgh, Florida and Oklahoma. Two years ago, when we learned that the 2011 ASDC conference was going to be held practically in our backyard, we knew this was our opportunity to encourage a lot of families to attend. So we began our campaign more than a year ago to advertise the 2011 ASDC conference by drumming up some interest. Getting people interested in the conference was not a difficult thing to do. We have in our midst ASDCâ€™s biggest cheerleader, Denise Tucker. Denise, the grandmother of a former PSD student, was one of the two winners of the 2011 Lee Katz award. Denise has attended the last six ASDC conferences and she tells every parent she meets how important it is to attend. She always brings up the ASDC conference at any family venue where she can get an audience. As it turns out, this year we did raise the bar and were fortunate to bring 22 families and 3 staff members to the conference. ASDC staff asked us to tell the story of our success. Following are the nuts and bolts on how we made it happen. There were four key parts to our accomplishment: advertising, fundraising, school-wide information sharing and support, and bookkeeping. 1. Advertising: We began advertising the conference more than a year ahead of time. We included information about the conference in each monthly newsletter to families, in our Friday family e-mail announcements, at all of our family activities and all of our family meetings during the school year. When information about the conference was available online, we made personal contact with parents we thought would particularly enjoy the conference. 9 We called our first meeting to start filling out registration forms at the Conference Schedule end of October 2010. It is important Wednesday Registration and to note that many families thought Opening “Sample Our City” that the conference was beyond their FunItNight! Families reachFamily financially. is not an inexpenwill sample menu items from sive conference, but many of our famiFrederick lies do not havearea a lotrestaurants, of extra money. learn about Frederick We helped families ask forcultural scholarships, and supported them each step venues, shop at local merchant of the way. and enjoy activities booths, such as face painting, a petting 2. Fundraising: Partnership Aczoo, games, Our and more. tion Team for Community, Home, and Thursday through Saturdayde– School (PATCH&S) organization Workshops: cidedParent that the bulk of the Three money we full days of concurrent raised during the school year would on attend issues,the choices, go toworkshops help families conference.consequences, The PATCH&S and committee voted the many to support each family interested available resources that can in attending by contributing at least $100. Our numerousoffundraisers were unique experiences deaf varied. Some parents obtained donayouth and siblings will be tions fromthrough community businesses for addressed art, drama, these fundraisers. We had our first and team building activities; group fundraiser (a flea market) in sibling workshops; and games, mid-October 2010. During the year, field trips, and more. we offered our parents the opportuniEvening Family ty to sell Activities: everything from frozen pizza kits to Avon products, to candy bars to oriented activities each flower bulbs. ASDCand account was esevening offer An family tablished for each family, although no social time. On one evening, real money changed hands. One dad participants will explore sold $1,300sights, worthshops, of pizza kits, and Frederick’s his profit of over $300 went into his galleries, and parks; enjoy account. dinner on their own; and When we had group fundraising experience living history events such as bake sales, flea markets, through Ghost Tours. a Chinese auction of beautiful filled baskets,Hall: a Bingo night, Phillies tickExhibit Sponsors, profoundly impact the businesses related to any of the development of deaf or hard of conference key areas, Children’s Books Brought hearing children.Popular Professionals educational institutions and will present in each of five with organizations, local totheLife Sign and Language! key areas covering such agencies and vendors will diverse topics as family display information and ASL Inside Sign Language dynamics, cochlear implant products in the Exhibit Hall. Storytelling Series effective use, language Museum: MSD’s Bjorlee Music, voice and sign language add a development, secondary Museum is packed with conditions, education choices, whole new dimension to these beloved historic stories and information show children and of all hearing community support options artifacts to sign the language. school, abilities therelating richness of and access, and many more. Frederick, the Hessian BarRequest Children’s Program: A racks, multiple wars, and a FREE catalog! comprehensive three-day more. www.harriscomm.com (800) 825-6758 Voice program of planned, Sunday morning – Final (866) 789-3468 Videophone supervised activities for Stories Include: breakfast and Conference children and ages 0 to 21 • Gladys Goes Out to Lunch Goodnight Moon • Ateens Creature Was Stirring Wrap-Up; airport inLittle fourMonkeys age groups. Five JumpingThe on the Bed • There's Something in My Attic • Little Quack transportation provided. informational needs andBurt and Wiggles • Big Al A Pocket for Corduroy • Blue 10 www.deafchildren.org ets raffle, and 50/50 raffles, profits were equally distributed among each person who either worked the event or contributed. In addition, we supported parents in their entrepreneurships. One mother ordered Deaf Pride silicone bracelets, which were advertised by e-mail and newsletters and sold at all PSD events throughout the year. Others made beautiful items for children and families that were sold at school events and in the community. These earnings were added to their individual accounts. 3. SchoolWide Information Sharing and Support: We felt from the beginning that we needed to keep all stakeholders aware of our plans to attend the conference and to keep them posted on our progress. The stakeholders were not only the families who would be attending the conference, but also PSD staff, the PSD Board of Trustees and the PSD Alumni Association. We also knew that we would need our staff, alumni, and board to support our efforts. Several staff came forward to help raise funds. Some staff contributed to specific families with whom they had connections. Our head of school, Dr. Larry Taub, approved having PSD bus- es transport families to Maryland for the conference. Along with our staffâ€™s support, we kept parents very visible during the fundraising. We wanted everyone to remember that the conference was for families and ultimately for students. 4.Bookkeeping: Bookkeeping was done on a Google Docs spreadsheet. Once things started heating up, we sent out letters regularly to families informing them how much money they had been given, how much they had earned and how much they still needed. This was a little tricky because numbers were constantly changing. At one point, a family member had a crisis and needed the money she had put in. We helped get her through that crisis and she still could attend the conference because we made a special effort to get her back up to goal. An important point about the bookkeeping is that no one who worked solely through group PSD fundraisers could walk away with any cash if he or she decided not to attend the conference. However, if a parent earned money through entrepreneurship, we reimbursed that money if his or her plans to attend the conference 11 fell apart. That is why the bookkeeping had to be carefully managed. Any money earned through our fundraisers was split among the remaining attendees if a family changed its plans and decided not to attend. We felt it was important to make this point several times so that everyone understood that this fundraising was for the ASDC conference only, and not for personal gain. We learned a lot from this experience. First, we learned that we continued to love the conference. Moreover, we learned that the process to get there proved to be as important as the event. Our families gained friendships and a strengthened support system. We learned to work together, even if we didn’t always agree. Even as some parents met their goals, they continued to attend events and support their fellow parents. A month after we came back from the 2011 ASDC conference, we held a meeting to begin discussion of our fundraising efforts for the 2013 conference in Tucson, Ariz. Look out, Tucson—here we come! 2011 Lee Katz Award Winners Lee Katz was the first president and executive director of the International Association of Parents of the Deaf, now American Society for Deaf Children. She displayed outstanding leadership, dedication, and service to parents and families of children who were deaf or hard of hearing. The Lee Katz Award, presented at the ASDC biennial conference, recognizes extraordinary parents of children who are deaf or hard of hearing. ASDC congratulates the 2011 Lee Katz Award Winners. Denise V. Tucker of Philadelphia is a grandmother of a recent Pennsylvania School for the Deaf graduate. Denise has been active at PSD since her granddaughter was in the early intervention program. Denise is a doer and creative, thinks out of the box, has many interests and is always looking for ways to enhance PSD’s family program. She is nurturing and welcoming to new families by taking them under her wing as well as explaining why they need to attend the next ASDC conference. Rosemarie M. Greco of Terryville, Conn., is a American School for the Deaf (ASD) graduate and has been actively involved with ASD for many years. Rosemarie is a dedicated parent, advocate and volunteer at ASD. Her role as a parent has been an influential one, and she serves as a positive role model not only for parents but also for students. 12 www.deafchildren.org From Birth to the Summer Academy By Sheila Shea Last December, I was scrolling through e-mails with the intent to delete as many as possible. One message caught my eye: 2011 Summer Academy for Advancing Deaf and Hard of Hearing in Computing We are looking for smart and talented deaf and hard of hearing students, who are in college or ready to enter college, who want to explore a career in computing. Could YOU be who we are looking for? Are you up for the challenge? Unbelievable, I thought. I have two deaf sons, Daniel and Matthew, who fit the bill. I immediately called my husband, Alex Seita, and told him of this incredible opportunity. I tried to at once digest and explain the information to him. ”Deaf and hard of hearing students would be accepted for admission,” I said, ”and tuition, room, board, transportation are free!” Students would take a computer programming course for college credit and a class in animation. Better yet, field trips would be scheduled to visit technology companies in Seattle, such as Google and Microsoft, and students would meet successful deaf and hard of hearing role models already working in the computing field. My husband and I were excited about the possibility for our boys. We had searched, largely in vain for years, to identify academically challenging enrichment programs designed for deaf students. Being on the precipice of such an exciting opportunity was cause for great anticipation, but also for reflection, as I considered how far we had come on our family journey raising deaf children. In February 1994, Daniel, then just 18 months old, was diagnosed with a severe to profound bilateral hearing loss. Thinking back, I can say without hesitation that this news was devastating. We found support, however, when we were introduced to other parents who were raising deaf children, and joined ASDC. Where we lived, a support network of audiologists, teachers of the deaf, speech therapists and other early intervention professionals led us fairly quickly to the realization that while Daniel’s hearing loss would pose 13 obstacles for him, his potential was unlimited. We were still not totally prepared when, in August 1994, just six months after Daniel’s diagnosis, Matthew was identified with a profound bilateral hearing loss at birth. Despite the momentum we had to develop to meet Daniel’s needs, the realization that we had now two deaf sons was a setback. We found ourselves grieving for our children and perhaps ourselves. We were frightened and uncertain about their futures. Regrouping, we made several critical decisions. First, we elected not to have cochlear implant surgery for the boys. At that time, in 1994, the literature and research were inconclusive about the extent to which cochlear implants would benefit prelingually deaf children and we did not want to expose them to surgery unnecessarily. Second, we fit the boys with hearing aids and immersed them in a visual language. Perhaps most importantly, we decided against taking sides in the “oral versus manual” debate that seemed prevalent among educators of deaf students— embracing, instead, the idea that our deaf children should be introduced to speech and sign language. As we became more aware of Deaf culture, we wanted our children to be proficient in sign language as well as acquire fluency in spoken and written English. 14 When the children became school age, we enrolled our sons in a public school with a regional deaf education program. Using sign language interpreters, notetakers and hearing aids, the boys thrived in their academic settings and took advantage of enrichment opportunities. They participated in regional interscholastic math competitions and were selected for the Johns Hopkins University Center for Talented Youth program. Nonetheless, these programs, while beneficial, were not tailored for deaf students; the boys always came home feeling that they had gained something, but were also left out due to communication barriers. Fast forward to 2010 and our unexpected introduction to the Summer Academy. We encouraged the boys to apply. They scrambled to secure the recommendations needed, while my husband and I researched the program. We learned that the Summer Academy was the brainchild of University of Washington Boeing Professor in Computer Science and Engineering. Richard Ladner, Ph.D. We were overwhelmed to learn that Ladner was the son of deaf parents, fluent in sign language and a Gallaudet University Board of Trustees member. An incredibly accomplished person, he is also renowned for his work on behalf of people with disabilities. After many years in theoretical computer science, Ladner turned his attention to accessibility technology research, especially for deaf, deaf-blind, hard of hearing and blind people. The prospect of our deaf sons being introduced to this www.deafchildren.org extraordinary individual confirmed our belief that this was a tremendous opportunity. More research revealed that the Summer Academy and was conceived to give students broad exposure to the field of computer science and demonstrate the possibilities that await them after college. As Ladner said, the Summer Academyâ€™s first goal is to build up the studentsâ€™ capacity to become successful in computer science, with the secondary goal of exciting and motivating them so that they have the capacity and desire to succeed. We were astounded and proud when we found out that both sons had met the rigorous criteria and were accepted. As we prepared for the boys to attend the program, they met the other 13 students via Facebook. The 15 students made an accomplished group from 11 states across the country. Five (including Matthew) were going into their senior year of high school, five had graduated from high school and were entering college, and three were already in college (including Daniel, now at Williams College). The students would live on the University of Washington campus in Seattle and be guided by Ladner, program coordinator Rob Roth (who is himself deaf) and three teaching assistants who were former Summer Academy students. Both Daniel and Matthew found their Summer Academy experiences mirrored the program goals. There is no question that the program built up their capacity to become successful in computer science, as well as instilling a sense of excitement and motivation about career opportunities in the computer science field. Daniel did not enter Williams College intending to major in computer science, but he has enrolled in an upper- level computer science course for the fall semester and will likely major in computer science. Matthew, who was just named as a National Merit Semi-Finalist, is now considering a computer science major in college next fall. The Summer Academy also introduced Daniel and Matthew to an aspiring deaf and hard of hearing peer group which was, in and of itself, a tremendous benefit. Our boys found their mates to be inquisitive, friendly and engaging, and they hope to maintain contact with their friends through social networking. The Summer Academy experience reminded us that deaf and hard of hearing students have a variety of communication styles and preferences. The divergent communication styles presented challenges at times, but gaps 15 were bridged through accommodations, including interpreters, real-time captioning, FM systems and notetaking. My younger son told us that the idea of being away from home for nine weeks seemed intimidating at first, but time went by quickly. Daniel and Matthew observed that they were always engaged, but also afforded ample free time, enabling them to achieve the right balance in an otherwise intense academic program. They expressed gratitude for the programâ€™s existence, staff and sponsors for extraordinary, life-changing experiences. As parents, we continue our journey and celebrate our deaf children, their aspirations and achievements. We are reminded, once again, of the myriad of sign language interpreters, speech therapists, note takers, teachers of the deaf and audiologists who have served our children along the way. We are so fortunate that our horizons, vision and dreams for our deaf children were expanded once againâ€”this time by the Summer Academy. 2012 Summer Academy in Computing for Deaf and Hard of Hearing Students The Summer Academy for Advancing Deaf and Hard of Hearing in Computing, sponsored by the University of Washington, seeks 10 deaf and hard of hearing students, ages 16 and over, who excel in and enjoy math, science and/ or computing. The Summer Academy is for students considering computer science, computer engineering, information science, information systems or information technology as a career. Admission is based on an assessment of academic ability and enthusiasm to participate in an intensive learning experience in all things computing. Students attend computer programming classes and complete a course in animation. Guest speakers are deaf or hard of hearing and currently working in computing fields meet with students. Students also visit companies such as Adobe, Cray, Google, Isilon, Microsoft and Valve. Tuition, room and board, and round-trip transportation is provided at no cost. This wonderful opportunity is made possible by the Bill and Melinda Gates Foundation, Johnson Scholarship Foundation, National Science Foundation, Google, Oracle, Cray and SignOn, Inc. Deadline: Dec. 23, 2011; applications received after the deadline will be considered on a space-available basis. For more information, visit www.washington.edu/accesscomputing/dhh/academy, or contact Robert Roth at email@example.com or (206) 685-3237. 16 www.deafchildren.org DVD About Protection from Sexual Abuse Protecting your Deaf Child from Sexual Abuse: A Parent’s Guide, a DVD produced by the Washington School for the Deaf in conjunction with Abused Deaf Women’s Advocacy Services, is now a part of the Described Captioned Media Program (DCMP) collection. The DVD’s catalog description states: Deaf students are especially vulnerable to sexual abuse. This abuse may come from family members, friends of the family, neighbors, or anyone else. These children may not be able to verbally express themselves, and their parents may not be able to communicate with them in sign language. Overviews the communication skills and tools to train these children in personal safety. Also, emphasizes the three basic rules of “No,” “Go,” and “Tell.” NOTE: Includes explicit signs and vocabulary related to human anatomy. DCMP members may borrow a copy of the DVD or view the title via streaming at www.dcmp.org. 17 Eva Longoria Lends Support to 2011 Toys “R” Us Toy Guide for Differently Abled Kids® For nearly 20 years, Toys“R”Us, Inc. has provided parents, caregivers and gift-givers with reliable toy recommendations for the children with special needs in their lives through the Toys“R”Us Toy Guide for Differently-Abled Kids®. Continuing this tradition, its 2011 edition features actress and philanthropist Eva Longoria on the cover, alongside Elijah De La Cerda, a five-year-old boy with Down syndrome from Fresno, Calif. Released annually, this complimentary resource is created with guidance from the National Lekotek Center, a nonprofit organization dedicated to making play accessible to children of all abilities. To help alleviate the guesswork in selecting toys most appropriate for a child’s physical, cognitive or developmental needs, all items featured in the guide are paired with colorful icons to indicate the skills that can be developed during playtime. With more pages and more toys than past editions, the guide is filled with everyday playthings specifically selected to help kids build 18 critical skills. Cover model Eva Longoria has strong ties and a deep passion for the special needs community. One of her sisters was born with developmental disabilities and inspired her to establish Eva’s Heroes in 2006. Based in Longoria’s hometown of San Antonio, Eva’s Heroes is a nonprofit organization dedicated to providing opportunities for individuals with special needs to interact, play, learn and enrich their lives. “Growing up in a tight-knit family and watching my sister face—and overcome— everyday challenges, I came to understand the critical importance of teamwork and socialization in the development of differentlyabled individuals,” Longoria said. “The Toys“R”Us Toy Guide for DifferentlyAbled Kids helps foster inclusive play environments by featuring toys that kids with special needs can enjoy alongside siblings and friends.” The guide is available in Toys“R”Us® and Babies“R”Us® stores nationwide in English and Spanish, and online at www.toysrus. com/DifferentlyAbled. www.deafchildren.org Invest in Our Future! The NAD joins hands with ASDC in investing in the future of deaf and hard of hearing children National Association of the Deaf www.nad.org/join 19 Cultural Ecology and Deaf Culture By Donald A. Grushkin, Ph.D. In today’s world, ecology is a subject of which many people are aware and concerned about. When we think of ecology, we usually bring to mind images of deforestation, loss of animal habitats and species, pollution of our soil and waters (such as oil spills), holes in the ozone layer and potential climate change. Ecology is of concern to us not only because of the potential harm to our immediate or distant future, but also due to the potential loss of natural resources. For example, Brazil’s rain forests are beautiful and home to a wide diversity of wildlife, but they are also more than that. Within these rainforests are numerous species of plant and animal life that have yet to be discovered by Western peoples. Even more important is the fact that we have discovered medical and other uses for some of these plants and animals. To illustrate, the venom secreted by the poison dart frog has been found to be useful while conducting heart surgery. If the poison dart frog had been extinct prior to this discovery, we might never have discovered this medical application and technique. What other applications and insights might we gain from the yet-to-be discovered flora and fauna of the world? Yet ecology does not apply solely to plants and animals. There is another form of ecology that is also worth 20 preserving: cultural ecology. All too often these days, traditional cultural values and “ways of knowing” are dismissed as being irrelevant in the name of progress and modernity. However, through contact with other cultures and peoples, we gain insight into new ways of producing art, literature, textiles, music, and more. How many of us enjoy eating Pad Thai, listening to soul or jazz music, waring lightweight clothing derived from African or Pacific styles, or reading a book describing other people’s ways of life? On the Food Network, it is often a point of pride among chefs to create fusions of different food traditions. On “Project Runway,” the designers often take inspirations from other cultures’ styles of dress. All cultures have things to offer their members as well as peoples from differing cultures. It has been well-established that Deaf people have a culture, with its own norms, traditions and values. It www.deafchildren.org is a tenet of traditional educational discourse that Deaf people must be assimilated into the hearing world, since it is believed that Deaf people are inherently “hearing.” Yet, Deaf people and their culture have already provided benefits to the “hearing world.” In addition to the art and literature Deaf people have created, new parents have found that they can communicate with their non-speaking infants through the use of baby signs. In addition, sign language is often provided as a communicative strategy for people with autism, Down Syndrome, and others who may be unable to vocalize. Moreover, the study of natural sign languages have provided linguists with new understandings of how languages are fundamentally universal regardless of external structure as well as the brain’s processing of linguistic and nonlinguistic information. Further, the study of Deaf people has increased our knowledge of how information can be organized in visual rather than auditory ways, which has potential for other fields such as information technology. There is a new project currently underway—Visual Learning and Visual Learning (VL2), which aims to explore how Deaf people learn and think through visually-based means. The results of the various studies being conducted in the VL2 project have potential applications to those with learning disabilities and/ or auditory processing disabilities. The benefits are not just for these specific groups, but also for all students from all walks of life, especially given the common knowledge that people learn through engagement of multiple senses. Harlan Lane, Ph.D., points out in his 1999 Mask of Benevolence that “cultural diversity is central to our understanding of what it means to be a human being; each culture lost, each language allowed to die out, reduces the scope of every person’s humanity” (pp. 237–238). Thus, it can be easily said that saving Deaf culture benefits us all, whether we are Deaf or hearing. But preserving Deaf culture is not just good for us as human beings; it is vital for our Deaf children into posterity. Be sure to stop by ASDC’s website at www.deafchildren.org! 21 Personalized Learning: An Alternative Education By Angela Choate and Lisalee Egbert, Ph.D. One of the most important questions for a parent of a Deaf or Hard of Hearing (D/HH) child is what the child’s educational options are. Furthermore, is it possible to receive public educational services if the parent should choose to homeschool? The answer is that very few services, if any, are available for independent homeschool families. Even though we c o n t r i b u te tax dollars to the public education system, a child with special needs cannot receive free public educational services if he or she is independently homeschooled; all expenses are out of pocket. Plenick (2007) states, “since private and homeschooled students are classified as non-public students, they are treated very differently from public school students” (p. 23). In other words, if a family chooses to homeschool, then the family chooses to opt out of the services provided for “equal access to a public education” or a “free appropri22 ate public education.” However, there is a somewhat new alternative education on the rise, personalized learning— known as the 21st century approach to public education. Personalized learning is becoming an increasingly advantageous option. Jeff Rice, with Association of Personalized Learning Schools & Services (APLUS+), describes it as “a unique, blended classroom-based and nonclassroom-based public educational model that is tailored to the needs and interests of each individual student” (2002, 2009, para. 1). Since personalized learning charter schools provide choices in curriculum, class instruction, social activities, and most importantly, choices in a child’s education, this model of education may work for some D/HH children. Given that personalized learning is done through public charter schools www.deafchildren.org with certified teachers overseeing the child’s education, there are really no legal qualifications for a parent to be the child’s primary instructor in the home. However, oftentimes prior to enrolling in a public charter school using the personalized learning approach, there is a pre-meeting scheduled to discuss the child’s needs, learning styles, and other issues that may help determine the best educational plan for the student. If enrollment has been agreed upon, “the student, parent, and supervising teacher contract as a team to facilitate this process” (CDE, 2000, 7-1) by signing a form of acknowledgement and responsibilities agreement between the parent, student, and staff, which usually indicate the parent’s commitment and responsibilities of participating, supervising, and facilitating the educational plan developed, the student’s responsibilities that includes successfully completing his or her work and displaying academic and social growth, and the supervising teacher’s responsibilities of implementing his or her credentialed expertise. According to 2000 California Dept. of Education guidelines, “D/HH [children] have the same ability to learn as do hearing children. But, for D/HH children to learn, they need, like all children, to be in a linguistically-rich environment in which language is fully accessible,” which can partly be provided by having a choice in curriculum (2000b, p. 80). There are a variety of resources and curricula to choose from, including traditional textbooks, media, visual aids, technology, and much more. As a result, it is important for a parent to know and communicate what their child’s needs and learning styles are. With the parent’s personal knowledge combined with the supervising teacher’s expertise, an appropriate curriculum can be selected and a solid academic course can be developed. Many personalized learning centers provide smaller classroom-based instruction that is optional, which can be very beneficial to a D/HH student and provide a more positive learning environment. Often times in an overpopulated traditional mainstream program, D/HH students are ridiculed by the general population. In a smaller classroom setting, children are more apt to be acceptable of one another’s 23 differences. There are also fewer visual and noise distractions when there are fewer students in a classroom. Although some students may take advantage of the classroom experience, others may still choose to do all of their coursework at home. The choices in social activities can also be beneficial to a D/HH student’s over all social and future success. It is detrimental to deprive any child of social interaction; therefore, parents and students can choose to participate in specific, planned school activities, social networks, or have the time to get involved in their own community. Either way, socialization and peer interaction depends on the student’s effort and the parent’s commitment to provide the best education not only academically but socially as well. The Independent Study Operations Manual reports “independent study has proved to be the solution for many because the instructional strategy for each student is as individualized as his or her particular need requires” (CDE, 2000, p. 3-2). Furthermore, “Research confirms that children look to their parents as their primary role models for learning. Parents, in turn, are ultimately responsible for guiding their child’s learning and education” (Rice, 200x, para. 20). Personalized learning empowers parents to be at the core of their child’s education. However, it must be recognized that this model of education is not in the best interest of some families. The ability to effectively instruct and teach children at home demands that parents share the same language and remain committed to their children’s best interest. Unfortunately, less than 10% of parents with D/HH children know sign language. If a parent is unable to effectively communicate with his or her child about common daily activities, then that parent is unable to introduce new academic concepts. If the parent and student are able to acknowledge, agree, and exhibit their responsibilities that are laid out in the contract with the school staff, and if the parent remains committed to search out options, to provide social interaction, and to effectively instruct and teach his or her child, then the personalized learning model of education can provide an optimum educational experience for D/HH children, especially for families who want to homeschool, yet need public services for their child’s special needs. Professionals in Deaf Education ASDC seeks articles from professionals who work with Deaf children or students. If you have articles that may benefit families with Deaf children, please submit the articles and accompanying photographs by Jan. 15, 2012, to Editor Tami Hossler at firstname.lastname@example.org. 24 www.deafchildren.org References California Department of Education. (2000a). Independent Study Operations Manual. Retrieved from http://www.cde.ca.gov California Department of Education. (2000b). Programs for Deaf and Hard of Hearing Students: Guidelines for Quality Standards. Retrieved from http:// www.cde.ca.gov/sp/ss/dh/documents/proguidlns.pdf Rice, J. (2002, 2009). Association of Personalized Learning Schools & Services. The APLUS+. Retrieved from http://www.theaplus.org/personalized_learning. html Plecnik, J. (2007). Equal access to public education: An examination of the state constitutional and statutory rights of nonpublic students to participate in public school programs on a part-time basis in North Carolina and across the Nation. Texas Journal on Civil Liberties & Civil Rights, 13(1), 1-30. Retrieved from ProQuest Education Journals. (Document ID: 1472237081) Angela M. Choate is an advocate for Community Options in Resources and Education. She and her husband have two grown daughters who have utilized their options and experienced the benefits of a homebased education. Lisalee D. Egbert, Ph.D., is an assistant professor at California State University, Sacramento, in its Deaf Studies program. She and her husband are proud parents of three gifted boys, one of whom is in special education. ASDC’s Monthly E-Mail Blast The ASDC monthly e-mail blast is full of information about ASDC, member news, updated conference news, book reviews, websites, and more. If you are a member and are not receiving the e-mail blast, we may not have your correct e-mail address. Please keep ASDC informed about any address or e-mail changes by e-mailing email@example.com. 25 IDEA Final Regulations Released The U.S. Dept. of Education has announced the release of the final regulations for the early intervention program under Part C of the Individuals with Disabilities Education Act (IDEA). These final regulations are to help improve services and outcomes for Americaâ€™s infants and toddlers with disabilities and their families. The final Part C regulations incorporate provisions in the 2004 amendments to Part C of the IDEA. Additionally, the regulations provide states with flexibility in some areas, while ensuring state accountability to improve results and providing needed services. The regulations focus on measuring and improving outcomes for the approximately 350,000 children served by the Part C program, with the goal of ensuring that such children are ready for preschool and kindergarten. The pre-publication Part C final regulations are posted online at www2. ed.gov/about/offices/list/osers/news.html. In addition, the Part C portion is now available for anyone to browse through at idea.ed.gov. The official final regulations will be published in the Federal Register. 26 www.deafchildren.org 27 At the Austine School of the Vermont Center for the Deaf and Hard of Hearing, students use their hands not only to communicate, but also to make connections to the world around them, both in the classroom and out. Through our collaboration with Brattleboro Union High School, Austine students have access to the public schoolâ€™s full range of academic and technical training resources while also receiving the specialized assistance of a deaf educator and the support of a close-knit community of deaf and hard of hearing peers. As with all programs at Austine, our goal is to promote both lifelong learning and lifelong friendships, while providing students with the knowledge, confidence and determination to ensure their future success. Learn more at: www.vcdhh.org/hs 28 www.deafchildren.org 2011 ASDC Conference Maryland School for the Deaf, Frederick, MD June 22-26, 2011 29 Alleviating the Fear of the Unknown By Anshu Basnyat, LCPC My family and I attended the 22nd Biennial American Society for Deaf Children Conference in Frederick, Md. last June. We are a new family to the Deaf community and this was the first time we attended this conference. It was a wonderful experience where we learned a lot about Deaf culture through research findings and shared experiences. We left the conference feeling warm and fuzzy, albeit very exhausted RIT • • by the fourth day. What really touched me was the impact it had on my six-year-old hearing son, Ajay. While the parents attended workshops, the children attended day camp full of fun activities. On the first day, Ajay was excited since he did not know what to expect, but only knew there would be many fun activities to do. On our way home that day, he stated he had fun but felt left out because he did not know sign language. He felt uncomfortable communicating Rochester Institute of Technology Prepare for Success Cutting-edge career education for students with hearing loss • Dynamic, high-tech learning environment • Hands-on experience in your field • Outstanding access and support services For more information, call 585-475-6700 (voice/TTY) or email NTIDadmissions@rit.edu www.rit.edu/ntid/asdce 30 www.deafchildren.org with others even though there were hearing people around. Ajay could not tell who was deaf and who was hearing. The morning of the second day of camp, he insisted he did not want to go because he could not sign and was uncomfortable. I tried reassuring him that there would be plenty of nice people at the camp to help him. I also took this as an opportunity to teach him about tolerance and embracing the Deaf culture by learning sign language. Furthermore, I explained to him that his younger sister needed us to learn sign language so we could communicate with her. At this point he said, “Can’t we just teach her to talk so she doesn’t have to learn sign language?” All the explaining was of no avail, and he continued to whine, whine, and whine some more. He reluctantly followed us to the car and during our drive to the conference, I decided to create a story about a fictitious family with a deaf child who was like everybody except that she needed sign language to communicate with her family and friends. He listened to the story and made parallels to our own reality. Given all of the drama at the house earlier, I was pleasa n t l y surprised that the car ride was fairly calm. When we arrived at camp, I explained to the camp leader that my son was having a hard time since he did not know sign language and it would be greatly appreciated if they could keep an eye on him. The camp counselors were very understanding and reassured him that he could go to any of them if he needed help. At this moment, I could see it in his face that the fears were alleviated and he happily joined his group. At pick-up, he was his normal highly energetic self and reported he had a great day. He relayed everything that he did in camp on our ride back home. He reported that more people were talking today and he even learned a few signs. On the third day of camp, he excitedly joined the camp with many deaf and hard of hearing children and adults. This positive exposure carried on to the next few days where he showed an immense interest in learning sign language by watching videos, practicing signs, and even searched on the Internet for his favorite Signing Time videos. He stumbled across interviews with the Signing Time child actors (Alex and Leah) and became really engaged in what they had to say. I know this is a start of a beautiful, lifelong journey of embracing Deaf culture and learning American Sign Language for our family. Kudos to all of the wonderful people who made this conference happen! Anshu Basnyat has a blog at http:// theempoweredparent.blogspot.com. 31 What is Deaf Plus? The term Deaf Plus refers to a person having physical or cognitive conditions in addition to being deaf or hard of hearing. According to Gallaudet University Institute, more than 40% of deaf children qualify as Deaf Plus. Those born with additional conditions have unique needs that require special assistance and educational services. At the forefront of Deaf Plus is language acquisition and communication. In order to accomplish these, parents need to feel supported by the educational services in their states. Joining a special interest group is a valuable way to network with other families facing similar challenges of raising a Deaf Plus child. Deaf Plus may include: • Autism • Visual impairment/Deaf• Syndrome-related blindness • Emotional/behavioral • Developmental/cognitive/ • Traumatic brain injury intellectual delay • Chronic medical conditions/ • Orthopedic/physical diagnoses impairment • Other medical conditions • Specific learning disability I Deafinitely Can! The Endeavor is excited to feature stories of deaf and hard of hearing individuals who test and go above their limits. If you know of someone with a story to tell, e-mail the editor at firstname.lastname@example.org. 32 www.deafchildren.org Autism in Deaf Children By Ann Moxley, Ph.D. Autism is a spectrum disorder, meaning the characteristics can be expressed in different combinations with variable severity. Some children may have only mild impairments while others have more severe symptoms. The hallmarks of autism are severe and pervasive impairments in development, specifically relating to others, significant communication problems, and stereotypic or unusual behaviors or restrictions in activities and interests. The most common diagnostic categories are Autistic Spectrum Disorder and Aspergerâ€™s Disorder. The majority of children with autism show cognitive abnormalities with uneven development of their intellectual abilities. Epilepsy, or seizure disorders, can also co-occur. The exact causes of autism spectrum disorders are really unknown. Most likely, both genetic and environmental factors are at play. Multiple interacting genes are a more likely cause than a single gene and the environment can affect the expression of those genes. However, there is no credible evidence that inoculations and childhood immunizations are to blame. While these problems manifest themselves at an early age, with onset before three years of age, they may go unrecognized in the first two years of life, or even later in the case of Aspergerâ€™s. Some children with autism begin to develop language skills only to lose them as the disorder becomes more evident. The range of behavioral symptoms may include hyperactivity, short attention span, impulsivity, self-injurious behavior, temper tantrums, or even aggressiveness. The child with autismâ€™s response to sensory stimulation can be atypical from extreme sensitivities to smells, touch, or light to a preoccupation with such stimuli. A need for sameness or ritualistic behavior is common. These children have a limited range of interests, often repeating the same behavior over and over or being absorbed for hours with one activity. Children with autism have difficulty making eye contact, or sustaining any kind of interaction with others, and often retreat into their own worlds, which makes communication and interaction especially challenging if the child is Deaf as well. The diagnosis is more complicated in Deaf children because language delays are also common and can be mistaken for the communication problems seen in children with autism. Also, individuals with language problems can develop unusual behaviors to express 33 their needs, such as becoming more physical in their interpersonal interactions or even withdrawing from social situations. Because language is based on social interactions, a lack of normal language development has a significant impact on a child’s social skills. To differentiate autism spectrum disorders from a primary language problem in this population, one should look for signs that a child desires interactions with others even though he or she may be awkward or sometimes inappropriate, which could point more to a primary language problem. Early signs and symptoms of autism are often the absence of typical behaviors. Some things to look for are: • Lack of eye contact • Not smiling in response to a smile from an adult • Inability to read and understand other people’s facial expressions • Not seeking your attention • Lack of awareness of other people • Aversion or lack of response to touch, cuddling, being held • Not using gestures such as pointing • Not asking for help or making basic requests • Lack of imitation of others movements, facial expressions, gestures, or signs • Not sharing interests or successes with others • Lack of “pretend” play • Repeating words or actions over and over • Unusual attachments to objects or toys 34 • Obsessively lining up objects or wanting things arranged in a specific order • Need for a rigid routine and difficulty adapting to change • Not following objects visually • Abnormal postures or unusual ways of moving (always walking on tiptoe) • Atypical reaction to sights, smells, textures, touch, or taste • Self-stimulatory behaviors which can include: • Hand-flapping • Rocking • Spinning • Head banging • Staring at lights • Tapping ears There is no cure for autism, but early and intensive intervention can reduce the effects of the symptoms and maximize the child’s development. If you suspect your child has autism, have him or her evaluated by someone familiar with both autism spectrum disorders and Deaf individuals/Deaf culture. Ann Moxley earned her Ph.D. in clinical psychology from the University of Florida and received post-doctoral training in neuropsychology from the VA Hospital in San Francisco. Her specialty areas of assessment include deaf and hard of hearing individuals, developmental disabilities, autism spectrum disorders, learning disabilities, brain injuries, and other psychological problems, primarily in children and adolescents. www.deafchildren.org History of Deaf Autism America By Rosangela Jaech and Stefanie Ellis-Gonzales The artwork, as seen above, was designed by a deaf parent of a deaf child with autism who participated in the 2006 Autreat. The official sign for autism is shown here. The hand moving towards the inside symbolizes the person with autism’s inclination to retreat within his or her own self, and the cupped hand represents his/her world. The sign also represents inclusion and involvement, serving as a reminder that it is vital and essential to the human spirit to give and receive love and attention. We are deaf mothers of deaf children with autism who co-founded the first Autreat for families of deaf children with autism at South Dakota’s Camp Lakodia in April 2006. The Autreat was a valuable and rewarding experience for all in attendance. With 22 parents, 16 children, and 8 speakers participating, a wealth of information, ideas, resources, and much more were shared during those few days. Over the years, our dream of establishing a formal organization for deaf individuals with autism never wavered. Last summer, an opportunity arose to become affiliated with ASDC. Through this partnership, Deaf Autism America (DAA) has an outstanding opportunity to truly grow and reach out to parents and professionals involved with deaf children with autism. Education, advocacy, networking and support are DAA’s goals, which coincide with ASDC’s mission. DAA’s mission is to support and educate professionals in the field of deaf education and families of deaf children with autism, and to advocate for high-quality programs and services for deaf children with autism. DAA is very interested in recruiting more families and professionals involved with deaf children with autism. The goal is to form a larger, inclusive group of individuals interested in learning and sharing experiences at future conferences, as well as becoming part of a referral and information network. Interested parties should contact Rosangela Jaech at deafautism@hotmail. com for more information. You will receive a form to fill out, along with updates on membership, conferences, and other information related to autism and deaf people. 35 My Deaf Son With Autism By Jennine Gosk I am a deaf mother of a deaf three-yearold with autism, Zachary. We have been on the journey of autism for more than two years. Zachary was born Deaf. My vision was that he would go to a Deaf school, be part of the Deaf community, play sports, and be around his deaf friends, just like his mom. I felt a sense of pride that my child was Deaf. Over time, he learned to sign 12 words, played with other children and his family members, and was a bright toddler. I had no idea anything would happen to him when he turned 18 months old. I used to imagine that he would grow up as a neurotypical deaf child. In July 2009, we moved from Pennsylvania so he could attend a playgroup at the Delaware School for the Deaf (DSD). Around that time, Zach stopped signing, had repetitive behavior, and didn’t play with other children. I thought he was feeling overwhelmed due to the move, and I didn’t really pay attention to his symptoms. In August, I brought him over to my aunt’s house. My cousin Kevin noticed his odd behavior, and studied him carefully, noting specific symptoms: chewing his shoes, poor eye contact, dislike of being touched, and 36 no signing. Kevin wrote a long note telling me that he suspected Zach might have autism. I was stunned and in disbelief at this revelation. I said, “But he wasn’t born with autism.” Kevin explained that as a speech pathologist working at a school for children with autism, he recognized Zach’s behavior was similar to his students’. He also said that 90% of those children’s symptoms appear between 18 and 30 months old. He added that Zach needed to be evaluated by a professional. The very next day, I called Zach’s social worker and playgroup teacher. The DSD team and social worker recommended that I wait a few months to see whether Zach’s behavior would change once he started playgroup. After a few months, there still wasn’t any improvement, so DSD called for a team evaluation, which included a psychologist, teacher, and pathologist, from Delaware Autism Program at Brennan School. It often happens that autism is misdiagnosed in deaf children because of communication difficulties or simply not paying attention. The team knew my son used to sign and that he came from a Deaf family, so they carefully observed him in the classroom three times. Other kids attempted to approach Zach to www.deafchildren.org play or share toys, but he continually ignored them. On Dec. 16, 2009, the team diagnosed Zach with autism. The recommendation was for him to get 30 hours of Applied Behavior Analysis (ABA) at Delaware Autism Program. I was utterly heartbroken by the diagnosis. I feared that he no longer belonged in the Deaf school and could not be part of the Deaf community. I was lost and did not know how to educate myself regarding autism. How could I make the right decisions for Zach? What was the best way to educate him? All the new terms were foreign to me: Applied Behavior Analysis (ABA), Floortime, SonRise, biomedical, gluten-free and casein-free diets, and many more. My son started ABA at Delaware Autism Program on March 1, 2010. My heart told me something wasnâ€™t right. One day, I dropped him off in the morning, and watched the sessions through a one-way window as he was prompted through a series of trials. He cried a great deal. I kept thinking that he might need to increase interaction opportunities with his peers and adults, but I did not know where to find the answer. A few months later, I learned about Floortime through an online discussion group, and read Engaging Autism by Stanley Greenspan, M.D. Floortime focuses on developing thinking, interacting, and communicating through relationships between parents, teachers, and peers. This suddenly felt like the right approach for Zach. I decided to move back to Pennsyl- vania in order to get more services for Zach, as well as better insurance coverage for his biomedical treatments and therapies. I took my son to a Floortime clinic, Kids Space, in November. The therapist was wonderful. She coached me on developing positive interaction with my son in sign language. I followed his lead engaging in interactions that brought him pleasure and joy. For example, Zach enjoyed walking back and forth on a straight line, so I did the same. Suddenly, he looked up at me and smiled. I set up tunnels and a blanket to make a tent, and he wriggled inside. I joined him under the blanket. We lay together and looked at each other for over a minute. This helped him develop better eye contact, but even today takes a lot of practice. More importantly, I focused on his sensory issues. The therapist gave me some sensory integration articles. Zachary is easily over-stimulated and has strong oral motor cravings. When he gets hyper and overexcited, I bring him to the trampoline and swing to provide sensory input. When he needs to put things in his mouth, I give him rubber tubes to chew on to ease his tense jaws. The therapy was a great beginning for us. Last February, he was placed at Easter Seals in southeastern Pennsylvania. What made it even more wonderful was that the autism educator signed to both the hearing and deaf children. A Deaf educator worked with Zach on signing and playing three times weekly. Socialization with his peers was one of my concerns. By luck, I happened to 37 find a play/social therapist from the WannaPlay program in New Jersey who could sign very well. She got Zach a signing playmate, Paul, who is neurotypical. Through this interaction, Zach’s imitation skills improved. He laughed out loud when Paul made silly faces. The relationship was heartwarming to see. Zach began playing with the neighborhood kids a few months ago. Last year, he would stay on the outskirts and not join in. This year he noticed some boys riding bikes over ramps. To my amazement, he picked up a small bike and walked it over the ramps. Zach now has a favorite friend who visits once a while. In the beginning, she followed his lead every time, and he eventually started doing the same. They play games, take baths together, and chase and tickle each other. Zach is still attending TheraPlay for sensory integration and feeding therapy; he continues to resist many new foods. The therapist, through sign language, works on his sensory input such as swinging, jumping, brushing, giving massages with lotion and using Picture Exchange Communication System (PECS) for a half hour then eventually bringing him over to the feeding room. She puts his favor38 ite toys near the new food. This leads him to play near or with the new food: touching, smelling, and eventually tasting. Overall, Floortime and sensory integration are very beneficial for Zach and I feel comfortable with learning in positive ways without resistance and frustration. For any parents of a deaf child with autism, I recommend using signs during Floortime, especially for interaction. Every child is different. It doesn’t mean that I expect my child to lose his diagnosis. However, he has shown great improvement in a year. I also use a combination of biomedical, Feingold, gluten-free, and casein-free diets and autism education. I remind myself that autism is not a sprint; it is a marathon. I have dreams for Zach and my wish is for him to return to the Deaf school, be part of the Deaf community, lead a good life, and develop independence. All I can do as his mother is give him plenty of love, attention and happiness…and remind myself it is okay to shed tears sometimes. Jennine Gosk graduated with a bachelor’s degree in child development from Gallaudet University. She is currently a stay-at-home mother to her son, Zachary. www.deafchildren.org The Difficult Road to a Good Education By Karen Hodgson My Deaf son, Hunter, is nine. He knew 50 signs until he was about 20 months old, then suddenly didn’t know any signs. He was three years old when he was enrolled, without expressive communication, at a Deaf school. It was very frustrating trying to figure out what he wanted, due to the communication barriers and his frequent emotional and behavioral outbreaks. The preschool tried its best to help him. When he was five and in kindergarten, he was assigned to the special needs program. From there, everything went downhill. If he was touched or grabbed, he became aggressive; he disliked being touched—a common issue among children with autism. He was expelled due to behavioral issues. Hunter was then enrolled in a public school. The teachers there had no experience with a deaf child with autism. After going through three teachers and three “sign language” interpreters, he finally got a teacher who stayed with him for two years. When he was six, he was finally diagnosed with Pervasive Development Disorder (PDD), a highfunctioning Autism Spectrum Disorder (ASD). He learned to communicate using gestures, but I was resistant, preferring him to use sign language. Later, he was introduced to the Picture Exchange Communication System (PECS). He eventually picked up signing; his teacher was enthusiastic, had lots of patience and gave posi- tive reinforcement, which helped him to thrive. After those two years, I was finally able to have two-way communication with him. He was thriving. Unfortunately the teacher left his job, so Hunter was introduced to a new teacher. Once again Hunter had a difficult time adapting, and behavioral issues arose. What I learned through these experiences was that when teachers do not know how to handle Hunter, the easiest way for them to deal with the situation is simply suspend him. This was and still is frustrating. I made the decision to take matters into my own hands and homeschool Hunter. Homeschooling is a challenge for me as his mother: going through this with him, teaching him what I feel he needs to know, giving him encouragement, showing him places and how it all came to life. Even with challenges, homeschooling Continued on page 42 39 Deaf Plus: Smooth Transitions to Independence— Not Without Effort There may be times when we are powerless to prevent injustice, but there must never be a time when we fail to protest. –Elie Wiesel By Cathy Ernisse sign class? I remember years ago in my American Sign Language (ASL) class Deaf individuals with secondary thinking of my three-year-old deaf, disabilities deserve opportunities for multiply-disabled daughter. Learning independence and a self-determined this language was my only real way to life, but these opportunities are many be part of her life. I remember leaving times not easy to come by. I know this class, my eyes brimming with tears, because I have a daughter, Kyra, who is saying to God, “I must have the abildeaf and has a traumatic brain injury as ity to learn this language, you would a result of a brain tumor she was born not send one of your precious children with. After an eight-hour craniotomy through me if I were not able to learn at seven weeks old, the doctors told us her language to fully support her in this Kyra would most likely never survive life. She deserves an involved supportand she had less than a 5% chance of ive mother just like my three hearing seeing her first birthday. She has just children have.” turned 19, beating these odds. There Kyra attended a school for the deaf are other things that are just as devas- from the age of three to nineteen. tating as cancer—such as the attitude With the constant visual input of of indifference. language, she learned to sign—but All parents desire it took time. I know the same for their chilnot all deaf, multiplydren: good health, a disabled children are good, solid education, this fortunate. Some loving relationships are turned away from and an independent deaf schools because and productive life. of their secondary When a deaf child is disabilities. Deaf born into a hearing schools report these family, parents are kids are too expensive faced with many questo try to educate. The kids then end up in tions. Family relationmainstream programs ships can be tested. where the signing Do you choose to go to 40 www.deafchildren.org environment is limited. With only one person signing with them all day, how long does it take these students to acquire language? Some children grow increasingly frustrated without language and this often turns into behavioral and emotional problems. Without a rich language experience, a child cannot grow to his or her greatest potential. I know from personal experience that deaf multiply-disabled children can learn language if exposed to a languagerich environment at an early age— including at home. I know it is not easy, but I say to other parents: just do it for your child. Transition from school to adult life has been one of the most difficult periods as I advocate for Kyra. One night when she was 16, I asked, “What kind of work do you want to do when you graduate from Rochester School for the Deaf?” Her signed response was, “I WORK DEAF PEOPLE, HEARING PEOPLE THAT SIGN.” Thinking she misunderstood my question, I asked the same question. Her response was the same. I sat there for a minute processing what she said. She was telling me she wanted direct communication where she worked when she was done with school. She wanted to be independent. I was overjoyed! She had come a long way since she was seven, when I would drive her to school as she vomited in a bucket and then have staff peel her from my leg; I then drove home crying my eyes out. It has been a long road but now she wants independence! Luckily, we live in Rochester, N.Y., near the National Technical Institute for the Deaf (NTID). Our home school district of West Irondequoit was willing to hire an agency to do a communitybased work assessment. I did not want Kyra’s language to impede the results; I wanted the assessment done at NTID where they understand and know how to work with deaf individuals. Kyra was placed in a small office there for two weeks in May 2009. This experience was so positive, I asked if she could return for the 20092010 school year. She returned for one morning a week; she loved being there. Our district sent a job coach/interpreter to support her in learning tasks. In January 2010, I inquired if Kyra could return in the fall, but was denied. I left that meeting in shock. There are many jobs our kids can learn to do. My daughter and her peers can be trained to do the least difficult jobs for a variety of settings; such opportunities give them the chance to be included and productive members of the community. The Education of the Deaf Act (EDA) will be re-authorized by Congress in 2013. It needs to be amended to include deaf individuals with intel41 lectual disabilities. If Congress cannot do this, I believe we should advocate to stop federal funding to schools and universities that turn away our kids. The opposite of love is not hate, it’s indifference. The opposite of art is not ugliness, it’s indifference. The opposite of faith is not heresy, it’s indifference. And the opposite of life is not death, it’s indifference. – Elie Wiesel I continue to search for a somewhat inclusive work environment for my daughter. I am looking for a business within our community that would be willing to let her come in with her interpreter to learn tasks for the next two years until she graduates. With this kind of opportunity, Kyra can learn skills and tasks that she can do independently so that after she graduates at 21, she may find employment. We won’t have to search for a community agency to support Kyra as she searches for a job and we won’t have to find a job coach who might know sign language. Deaf kids with secondary disabilities have the right to leave school at 21 with job skills that they can do and are Road to a Good Education Continued from page 39 is benefiting Hunter so far, especially since he loves hands-on activities and going on field trips. This is where we are at now, in our difficult journey through the educational system. Having gone through all this, there needs to be greater professional qualifications at Deaf schools and in mainstream programs for working 42 comfortable with. Transition services for these deserving kids needs improvement. There must be better federally-funded programs to support deaf education and self-sufficiency for all deaf individuals. Please write your federal representatives. Our kids need your support for an independent and productive life! EDA Reauthorization The Education of the Deaf Act (EDA) is up for reauthorization in 2013. Cathy Ernisse is working with her federal legislators to amend the act to include Deaf individuals who have intellectual disabilities. The goal is to to provide training during transitional years from the ages of 18 to 21. This would provide those individuals the opportunity to learn skills to be productive and employable—benefiting them financially, socially, and emotionally. Please write your federal representative to ask for support. with deaf children. Such professionals need to have a great deal of training and patience. Our children deserve the opportunity of a good education in an environment that respects their uniqueness. Karen Hodgson graduated from Model Secondary School for the Deaf and attended Gallaudet University. She and her husband Derek reside in Florida with their three children: Hunter, 9, Janelle, 7, and Xavier, 5. www.deafchildren.org From “Horrible” to “Great”: Holidays By Linda Twilling, Ph.D. It’s January in my secondfloor psychotherapy office where the couch pillows are a tranquil blue and the portable heater provides extra warmth on this chilly winter day. The shades are tilted up so that backlighting doesn’t interfere with visual communication. On the hour, I see well-functioning Deaf* and hearing adults. People come in to talk about everything from minor life stresses to more severe mental health conditions. My appointment schedule is full and every hour is unique, with one person talking about issues of aging, another adjusting to antidepressant medication, and a third who is trying to figure out how to convince a teen to stop experimenting with drugs. Prior to our meeting, I greet each person in the waiting area and we chat—in signs or speech—and I casually ask about the holidays. Hearing people and Deaf people from Deaf families smile and tell me about the family visit, the stress of shopping, or complain about Uncle Fred, who always drinks too much at holiday dinners. However, many Deaf people from hearing families respond to my question about the holidays with a single sign: “horrible.” “Horrible” describes an experience that always begins with high expectations and ends with isolation and disappointment, although there are two different versions of “horrible.” Most commonly, Deaf people tell me that they once again joined beloved family members for latkes or turkey or New Year’s Day brunch. They go on to tell me about crowded dining rooms with everyone eating and talking at once. They tell me how they were frustrated when requests were misunderstood. Most horrible was a 20-minute story by Uncle Joe who had the whole table laughing as the Deaf person asked, “What is he saying? Why are you laughing?” only to be told, “I’ll tell you later” in basic signs. “Later,” my patient received a one-sentence summary: “He told us a funny story about his trip to Canada.” The details are never filled in as the loved-one then responds to another conversation or serves the pumpkin pie. Other Deaf people tell me stories of hope and disappointment. These Deaf people often decide to avoid the holiday 43 dinners with their hearing families, because of past isolation. Instead, they join friends for dinner or stay home to watch a movie. Unfortunately, there is still an instinctual yearning to be with family for the holiday and, once again, there is disappointment and isolation. Parents do not want their children to experience a “horrible” holiday. I also work at a children’s hospital where I talk with parents of young deaf children who are fully committed to their children’s inclusion in the family. So what happens? What happens between the time these parents make a commitment to their preschoolers and the time these adults come into my office? Or, more appropriately, what doesn’t happen? The answer to that question emerges when I talk to those Deaf people from hearing families who respond to my small-talk about the holidays with a different word: “Great!” I was taken aback the first time someone said, “Great!” I asked the young woman about her holidays and she talked about the traditions, the food, and chatting with family members. I told her it was unusual to hear such good things about big family dinners from Deaf adults in hearing families; more often, they tell me that they are not fully included. She looked at me with understanding and said that many of her friends complain about the same thing. “It’s not like that in my family,” she asserted. Her family knows that it’s impossible for her to participate in a noisy environment without signs, and everybody knows some signs; her 44 mother and her sister sign well. Another time, a Deaf woman told me about a “great” holiday trip where her family encouraged her to invite a Deaf friend. With two Deaf people at the vacation home, it was obvious that group communication needed to include them. Although this woman commonly functions by speaking and speechreading within her family, they made the effort to communicate more visually, and include her and her friend in planning and conversations. Another time I heard “Great!” was when the family pitched in to hire a sign language interpreter for a major holiday so that everyone could communicate with the Deaf son. Even though this was a significant expense for the family, they not only included their son in the party, they also demonstrated total acceptance of him. Both the woman on the holiday trip and the Deaf son with the interpreter told me about earlier experiences when their families expected them to participate in oral environments that were impossible for them; they recognized and appreciated that their families now were trying to meet them half-way. Let’s try to banish “horrible” holi- www.deafchildren.org days. In mid-January, let’s have Deaf and hearing people alike raving about their holiday desserts and complaining about their extra five pounds. One way to stop “horrible” holidays is to look at the “bright spots,” or Deaf people who describe great holiday experiences with their families. What we can learn from these amazing Deaf people and their amazing families is how to fully include everyone, not only when children are toddlers, and communication is simple, but also when they are young adults, and they are traveling across the country to connect with their family. How can families facilitate communication with a Deaf family member from childhood through adulthood? Recognize Differences Hearing families who have effective communication with a deaf family member know that the child is similar to his or her hearing siblings: the child loves them, likes friends and fun, and wants to have a good life. But these families also accept that their deaf children have a difference and they need to accommodate that difference, not expect the child to make all of the accommodations. How the family accommodates will be different for different families, depending on the child’s age, interests, talents and the choices parents make. It can include taking sign language classes, recognizing that a cochlear implant does not provide normal auditory input, educating the whole family and community about the need to provide visual communication, provid- ing appropriate books and toys, meeting other families with deaf children, and interacting with other people who share this unique difference—Deaf adults. Don’t Treat Differences as a Disability Families that enjoy effective communication among all members encourage their deaf children to expect the same level of interaction as their hearing siblings. They know that their Deaf children wants to participate in family conversations, have play-dates, and attend a good school. And, just as they do for their hearing children, the family makes changes in order to accommodate the deaf child’s needs. These families embrace the idea that their child will be fully successful, and that “success” will look different for different children. Be Open to New Information Families who fully include their deaf children in the holidays are open 45 to new information and they avoid making judgments. Historically, many professionals have not been so open. They often had strong opinions about the best communication and education options for a deaf child, and they only shared information that supported that view. Thankfully, this is changing, and professionals acknowledge that we don’t have all the answers about what is “best” for a deaf child; professionals openly share the contradictor y information that makes it difficult to provide a single direction for parents of young deaf children. With or without professional support, families who fully include their children are open to the options that work best for their child and family—and those options are all considered successful. Engage in Constant Re-Evaluation Families should recognize that they have limited information and cannot see into the future, and yet they must make choices that will have a huge impact on the children’s lives. They know that they must constantly re-evaluate and reconsider choices to ensure that communication, peer group and school environments are appropriate for their son or daughter. 46 An environment with four same-age peers may be perfect for a preschooler but will likely stunt the social development of a teenager. Learn About Your Child’s World From the moment these parents find out that their children is deaf, they find books, movies, videos, documentaries, and internet sites to help them learn more about kids and grown-ups who share their child’s hearing status. These parents know that if they yell over the back fence for their hearing children to come home for dinner, they need to give their deaf children a vibrating pager so they can have that same neighborhood freedom. Even if their children can integrate into a hearing environment, they let their children know that there is also a Deaf environment, and that’s also an important place to explore. “Great!” Families from a Christian background celebrate Easter, those from a Jewish background celebrate Passover, Muslims celebrate the birthday of Mohammed, and we all celebrate the Fourth of July. Holidays are important in every culture as a time to come www.deafchildren.org together and share food, traditions and love. It is also an important time for families to stop and reflect on their many blessings and problem-solve new challenges. For all families, and especially those with Deaf family members, it is a time to ensure that every family member—from tiny toddler to independent teen to well-launched young adult—is included in the joyful celebration of traditions, food, and family love. It’s a time for everyone to have a “great” holiday. *Following the preference of many Deaf people, I use the term “Deaf ” to refer to people who consider themselves to be a part of the Deaf community, use sign language and identify with Deaf culture. I also use the term “deaf,” primarily to refer to children who have hearing loss and may, or may not, be part of the Deaf community. Linda Twilling, Ph.D. is a psychologist who works with Deaf and hearing adults at Kaiser Permanente Medical Center in Fremont, Calif. She also works as a consulting psychologist at Children’s Hospital and Research Center in Oakland, Calif., with young deaf children and their families. She can be contacted at email@example.com. Did You Know? The International Association of Parents of Deaf was founded in 1967 by concerned parents of deaf and hard of hearing children. The organization changed its name in 1985 to the American Society for Deaf Children. Today: • ASDC is the oldest national organization founded by and governed by parents of deaf and hard of hearing children. • ASDC depends solely on donations, memberships, and proceeds from conferences for operations. • ASDC’s board is a “volunteer” board with members who pay their own travel and lodging expenses for all ASDC events. Become a part of this innovative organization by joining today! See membership form on page 56. www.deafchildren.org 47 Developmental Delays: Where to Start? Think of all the skills that children have to learn when they come into the world: smiling, turning over, responding to people, communicating, eating solid food, crawling, standing, and on and on. We expect these skills to emerge naturally over time and know more or less when they should. At three months, Susana will probably be doing this, at four months, she’ll be doing that. By a year, well, she’ll be tottering around, getting into everything. This time-table for skills to emerge is commonly called the developmental milestones. What’s considered normal development is described broadly, because children don’t necessarily learn skills at the same pace. Two different children born on the same day may learn the same skill months apart, and both can be considered “on schedule.” It’s when skills don’t emerge as expected, more or less on that broad schedule, that parents and caregivers may become concerned. 48 If You’re Concerned About a Child’s Development If you’re reading this, perhaps you’ve become concerned about your child or one you care for. We’re glad you’re reading this, because there are many immediate things you can do to learn more and help your child. First, know that there’s help available to find out just what the difficulties are, if any, and there’s help available to address those difficulties. The good news is that this help is usually free, and it’s available in every state. Developmental Delay First, you may want to talk with your pediatrician about your child’s development. Don’t be surprised if the pediatrician tells you not to worry, to be patient, to give your child more time to develop. Often, that’s what parents hear, especially in the early stages of investigating their child’s seeming delays. And it’s often true. Children develop at different rates; the pediatrician is well aware that many children show sudden bursts in development rather than slow, steady growth. On the other hand, your pediatrician may suggest that a developmen- www.deafchildren.org tal screening be conducted to see if, indeed, your child is experiencing a developmental delay. The screening is a quick, general measure of your child’s skills and development. It’s not detailed enough to make a diagnosis, but its results indicate broadly whether or not a child should be referred for a more in-depth developmental evaluation. What’s Involved in the Developmental Evaluation The developmental evaluation should be conducted by a highly trained professional who can use the results to create a profile of your child’s strengths and weaknesses across the range of five developmental areas. Those areas are: • Physical development (fine motor skills, gross motor skills) • Cognitive development (intellectual abilities) • Communication development (speech and language) • Social or emotional development (social skills, emotional control) • Adaptive development (selfcare skills) The results of the developmental evaluation will be used to decide if your child needs early intervention services and/or a treatment plan. Early intervention services are specifically tailored to meet a child’s individual needs and, as such, are a very important resource to children experiencing developmental delays. For example, early intervention services can include: • Assistive technology (devices a child might need) • Audiology or hearing services • Speech and language services • Counseling and training for a family • Medical services • Nursing services • Nutrition services • Occupational therapy • Physical therapy • Psychological services Things to Know • States have a positive obligation to help children who are experiencing a developmental delay in one or more areas. • Through the Child Find system that each state operates, developmental screenings and devel- 49 • • • • opmental evaluations are usually provided free of charge to families. If you’re concerned about your child’s development, talk to your child’s pediatrician, who can refer you to the Child Find system in your area. Early intervention services are meant for children under the age of three. These services are usually provided to eligible families either free of charge or on a sliding payment scale that’s determined by the family’s income. You can find out how to access early intervention services in your area by talking to your child’s pediatrician, calling a local hospital, or using NICHCY’s State Resource Sheet for your state. All of our sheets are available at www.nichcy. org/Pages/StateSpecificInfo.aspx The National Early Childhood Technical Assistance Center is also a great source of this information. Described and Captioned Media Program Free-Loan Media for Educational Accessibility The DCMP library provides over 4,000 captioned educational media titles to teachers, family members, and others who work with K-12 students who are deaf, hard of hearing, or deaf-blind. www.readcaptions acrossamerica.org 50 • Use NECTAC’s Contact Finder— located under “State Programs Under IDEA”—and select “Part C Coordinators” at http://www.nectac.org/contact/contact.asp Special education services are meant for children over the age of three. Services are provided to eligible children free of charge through the public school system. If your child has passed his or her third birthday and you’re concerned about a developmental delay or disability, call your local school (even if your child isn’t enrolled there). Ask how and where to have your child evaluated under IDEA, our nation’s special education law. Reprinted with Permission National Dissemination Center for Children with Disabilities (800) 695-0285 Voice/TTY firstname.lastname@example.org www.nichcy.org Do You Have a Story to Tell? The Endeavor wants stories from you. These stories can be about your experiences finding out your child was deaf, early intervention, education, socialization, advocacy, or anything else that can help other families on their journeys. The deadline to submit stories for the winter issue of The Endeavor is January 15, 2012. Send stories and photographs to Editor Tami Hossler at email@example.com. www.deafchildren.org Raising RJ: A Deaf Mom and a Blind-Hard of Hearing Son Share in the Dance of Life By Jodee Crace RJ is our Blind and Hard of Hearing adult son who works as a project assistant at a prominent communications company, utilizing his college degree in communications with an emphasis in news writing. How did he get to where he is now? How did we, as Deaf parents of different identities, do our unique dance with RJ? Several key factors come to mind as a parent without an instruction booklet. • Embracing the unexpected with new eyes. People are compelled to respond to situations in ways that will support or be consistent with their beliefs. • Attuning to who the child is, for what the child was meant to be. People may want to determine the course of the child’s differences by altering them to match the expectation of “normal” in society. • Celebrating the magic of the child’s uniqueness. People have the natural inclination to mold the child into parents’ values and expectations. RJ, as a living expert, also shares key factors: • Figuring out how the child functions best is an essential parenting skill. • Pushing the child to do things that might not be in their comfort zone is a necessity. • Making sure the child is surrounded by people who care, who are supportive, and who believe in the child. This process of attunement is essential. Putting all of these factors together helped develop the dancing steps in our lives: • The unlimited love, respect, and acceptance were instilled in RJ at birth, upon identification, and during the course of figuring out the steps. • The affirmation that RJ could do anything he strived to do, as long as he had the tools to be sufficient, happy, and independent. • The mantra that RJ had the freedom to be just RJ. RJ is dancing his way through life and I am his greatest fan. Editor’s Note: This story was shared at a family conference for parents and professionals working with Blind children at the Perkins School for the Blind last spring. 51 Tips for Parents of Children With Autism By Ann Moxley, Ph.D. 1. Learn about autism and autism spectrum disorders and seek out support from others. 2. Become an expert on your child: • Learn what elicits positive behaviors or responses and what leads to disruptive behavior. • Help your school develop a treatment plan by being aware of your child’s needs, strengths and weaknesses, and how your child learns best. 3. Provide structure and safety: • Be consistent and follow through with consequences to provide predictability. • Adapt your routines and schedules to your child’s needs. • Change the environment as necessary to keep your child safe. • Be aware of any sensory sensitivities and remove overwhelming sensory stimuli. • Provide appropriate sensory input to substitute for spinning, staring or other self-stimulatory behaviors. You might use bear hugs, weighted vests, rolling your child in a blanket, or providing movement toys and activities. 4. Find nonverbal ways to connect and be aware of your child’s nonverbal communication such as facial expressions, gestures, and body language. 5. Modify your expectations: • Accept your child and his or her positive characteristics. • Enjoy and have fun with your child. • Celebrate small successes. • Reward appropriate behavior. • Don’t compare your child to other children but to himself or herself. • Don’t worry about others’ opinions. 52 www.deafchildren.org Websites of Interest Deaf Plus Disabilities http://deafness.about.com/od/ multipledisabilities/Deaf_Plus_ Disabilities.htm Deaf Plus Organization http://www.deafplus.org/ Why Sign? http://www.whysign.com/ The Color of Language http://coloroflanguage.com/ Resources/ Clercâ€™s Children http://clercschildren.com/pitch/ parentsZone/ Easter Seals Special Needs Apps http://www.snapps4kids.com A community of parents, therapists, doctors and teachers who share information on mobile devices and more than 30,000 apps for children with special needs. Deaf Learners and Successful Cognitive Achievement http://www.learnnc.org/lp/editions/ every-learner/6393 Act Early: Autism Fact Sheet http://www.cdc.gov/ncbddd/actearly/ downloads.html Available in English and Spanish. Talk About Curing Autism http://www.tacanow.org/familyresources/the-back-to-schoolassignment-for-parents-of-specialneeds-kids/ Deaf Autism https://www.facebook.com/group. php?gid=7682821508&v=wall Back to School for the Child with Learning Disabilities http://www.education.com/magazine/ article/school-child-learningdisabilities/ Choosing Your Battles: Targeting Behavior Problems Worth Fighting For http://specialchildren.about.com/od/ behaviorissues/a/battles.htmÂ Project Endeavor http:// www.projectendeavor.org Provides deaf and hard of hearing Americans with broadband or high- speed Internet plans through discounted plans and devices. Have a website you think The Endeavor readers would like to check out? Share the website by e-mailing firstname.lastname@example.org. 53 ASDC’s Renewing Educational and Organizational Members Audism Free America audismfreeamerica. blogspot.com Audism Free America is a grassroots Deaf activist organization that advocates for Deaf American rights, cultural resurgence, and seeks primarily to challenge the ideological foundations of audism in America. Communication Service for the Deaf, Inc. (CSD) 102 N. Krohn Place Sioux Falls, SD 57103 605-496-0738 VP 605-367-5760 Voice 605-367-5958 Fax www.c-s-d.org CSD is a private, non-profit organization dedicated to providing services to deaf and hard of hearing individuals. Kentucky Commission on the Deaf and Hard of Hearing 632 Versailles Road Frankfort, KY 40601 502-573-2604 www.kcdhh.ky.gov The Kentucky Commission on the Deaf and Hard of Hearing, established in 1982, provides effective and efficient leadership, education, advocacy and direct services to eliminate barriers and to 54 meet the social, economic, educational, cultural and intellectual needs of deaf and hard of hearing Kentuckians. Missouri Commission for the Deaf and Hard of Hearing 1500 Southridge Drive Suite 201 Jefferson City, MO 65109 573-526-5205 www.mcdhh.mo.gov The Missouri Commission for the Deaf and Hard of Hearing functions as an agency of the state to advocate for public policies, regulations, and programs to improve the quality and coordination of existing services for individuals with hearing loss, and to promote new services whenever necessary. Missouri School for the Deaf 505 East 5th Street Fulton, MO 65251 573-592-4000 573-592-2570 Fax www.msd.k12.mo.us The Missouri School for the Deaf provides a wellrounded educational program for deaf children in the state. MSD was established in 1851 and is the oldest state supported school of its kind west of the Mississippi River. Separate facilities for elementary, junior high and senior high school students occupy nearly 90 acres. Students are prepared for the world of work and for post-secondary education opportunities, according to each individual’s potential. New Jersey School for the Deaf 320 Sullivan Way Trenton, NJ 08625 609-530-3100 Voice 609-530-5791 Fax www.mksd.org Katzenbach School has over 100 years of experience educating New Jersey’s Deaf and Hard of Hearing children. Katzenbach provides students with an atmosphere rich in Deaf culture, an environment of direct communication, and a curriculum that meets New Jersey’s Core Curriculum Content Standards. The goal of the educational program is to facilitate the highest level of achievement among the students using a Total Communication policy. Programming is also available to students who are deaf with other handicapping conditions. www.deafchildren.org Pressley Ridge School for the Deaf 8236 Ohio River Blvd. Pittsburgh, PA 15202 412-761-1929 Voice 866-858-0305 VP www.pressleyridge.org A nonprofit organization founded in 1832, Pressley Ridge provides foster care services, residential services, community-based services and education to families and to troubled and troubling children while helping these children remain close to their families and communities. All of Pressley Ridge services are guided by Re-Education beliefs: it is possible to teach competence; change is possible; and the development of trusting relationships with caring, committed adults is the most significant factor in turning around the lives of seriously troubled children. Rhode Island Commission on Deaf and Hard of Hearing Dept. of Administration Building One Capitol Hill, Ground Level Providence, RI 02908 401-256-5511 Voice/VP 401-222-5736 Fax www.cdhh.ri.gov The Commission on the Deaf and Hard of Hearing (CDHH) is an advocating, coordinating, and service-providing entity committed to promoting an environment in which the Deaf and Hard of Hearing in Rhode Island are afforded equal opportunity in all aspects of their lives. Rhode Island School for the Deaf One Corliss Park Providence, RI 02908-1795 401-222-3525 Voice 401-243-1024 VP www.rideaf.net The Rhode Island School for the Deaf is a critical, strategic and responsive educational center with a commitment to educational excellence for children who are Deaf or Hard of Hearing. The Rhode Island School for the Deaf’s mission is to ensure that all Rhode Island children who are Deaf or Hard of Hearing become literate, independent, and productive citizens who set and achieve life goals. Membership Package for Schools/Organizations ASDC provides a very special membership option for schools and organizations. If your school or organization would like to join ASDC as an Educational Member, ASDC will provide your school or organization with: • A free one-year membership for all of your families • A special thank you in the next monthly e-mail blast • A special thank you in The Endeavor • A special thank you in the news section of the ASDC website • A link to your school or organization’s website • A post of your contact information on ASDC’s Educational/Organizational Membership webpage Membership is only $250. If you would like more information, e-mail email@example.com or call (800) 942-2732. 55 firstname.lastname@example.org Parent Information and Referral Line: (800) 942-ASDC (2732) MEMBERSHIP FORM Name:__________________________ E-mail: ___________________________ Address: __________________________________________________________ City: ___________________________ State:____________ Zip:__________ Phone: Voice/TTY/Videophone Membership Type Individual memberships _______$40 per year: Individual/Family Membership _______$100 per year: Three-year Individual/Family Membership _______$5,000 one-time fee: Lifetime Membership _______First-Year Free Membership (Families with deaf or hard of hearing children are eligible for a FREE one-year membership. Just fill out this form and mail, e-mail or fax it back to us.) Deaf or Hard of Hearing Child’s Name: ___________________________________ Date of Birth: ___________________________________ Group memberships _______$250 per year: Parent Affiliate Group ( ____ Number of Parent Members) _______$125 per year: Library Membership _______$250 per year: Educational Membership _______$250 per year: Organizational Membership I would like to send more than my membership dues. Enclosed is a tax-deductible donation: $10 $25 $50 $100 _______Other Total Enclosed: $__________ Make checks payable to American Society for Deaf Children. Please charge my Visa or MasterCard: Card Number:_________________________________Expiration Date:______________ Please return to: American Society for Deaf Children #2047 800 Florida Ave. NE, Washington, D.C. 20002-3695 FAX: (410) 795-0965 • Phone: (800) 942-2732 • E-mail: email@example.com 56 WPSD 300 E. Swissvale Ave. Pittsburgh PA 15218 Non-Profit Org. U.S. Postage PAID Camp Hill, PA Permit No. 993 Our children are our future. Mission Statement The American Society for Deaf Children supports and educates families of deaf and hard of hearing children and advocates for highquality programs and services. Consider joining ASDC today, and receive four issues of The Endeavor each year, discount admission to the ASDC biennial conference, access to invaluable resources from the ASDC media library, and access to speakers for your parent support group or event. You will also join forces with thousands of other families across the country, and support an organization that advocates for crucial national legislation and services for deaf and hard of hearing children. American Society for Deaf Children #2047 800 Florida Ave. NE • Washington, D.C. 20002-3695 (800) 942-2732 • firstname.lastname@example.org • www.deafchildren.org