ENDEAVOR A Publication for Families and Professionals Committed to Children Who Are Deaf and Hard of Hearing
A Look Inside the Family
INSIDE THIS ISSUE: A Guide for Parents : All Kinds of Families
Teaching While Deaf: Understanding Student Situations Political Action...CRPD
p. 39 p. 23 p. 27
Youâ€™re invited to an
Open House at Gallaudet University!
Fall 2012 Monday, October 8
ACT administered on Sunday, October 7
Friday, November 9 No ACT
Spring 2013 Friday, March 29
ACT administered on Saturday, March 30
Friday, April 19
ACT administered on Saturday, April 20
For more information and to register for Open House and/or the ACT at Gallaudet, visit admissions.gallaudet.edu.
800 Florida Avenue, NE . Washington, DC 20002 800-995-0550 (voice) . 202-250-2474 (vp) . www.gallaudet.edu
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) (202) 644-9204 VP email@example.com www.deafchildren.org THE ENDEAVOR STAFF Editor Tami Hossler firstname.lastname@example.org Managing Editors Anita Farb Publication Services T.S. Writing Services, LLC www.tswriting.com ASDC STAFF Director of Advocacy Cheri Dowling email@example.com © 2012 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.
A Look Inside EVERY ISSUE ASDC Board
A Note From the Editor
FEATURES Let’s Run the Race of Life Together
ASL Improves the English Literacy and Communication Abilities of All Children
The Affordable Care Act: What It Means for Individuals with Disabilities
Empower Your Family with the Power of Double Pride
Strategies for Working with Children With Autism: Social Stories™
Teaching While Deaf: Understanding Student Situations
ASDC Supports the Ratification of CRPD
My Two Cents: Cochlear Implants
A Guide for Parents: All Kinds of Families
Love Being Deaf
A Family Story about Wei
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 Avonne Rutowski, M.A. Austin, TX 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 Jeff Bravin, M.A. West Hartford, CT email@example.com Carrie Davenport, Ed.S. Columbus, OH firstname.lastname@example.org
John Egbert Ham Lake, MN email@example.com
Tami Hossler, M.A. Miromar Lakes, FL firstname.lastname@example.org
Lisalee Egbert, Ph.D. Sacramento, CA legbert@saclink. csus.edu
Erin Kane, M.A. Rochester, NY email@example.com
Stefanie Ellis-Gonzales, M.A. Pleasanton, CA firstname.lastname@example.org Robert Hill, M.A., M.Ed., Ed.S. Tucson, AZ email@example.com
Tony Ronco, P.Eng. La Mesa, CA firstname.lastname@example.org Council on Education of the Deaf Representatives Beth Benedict Jodee Crace
A Note From the Editor Welcome to another issue encouragement of peers, of The Endeavor. You’ll and so much more. notice that I now have You may have started to another new grandbaby, notice that ASDC focuses Miss Stella Rose. Boy, do I highly on language and cherish my family! language access in every This issue focuses on issue. It is ASDC’s everthe individual family: how present goal to provide Tami Hossler we are made up, how we parents with information interact and support each and support through The other, and the uniqueness of each Endeavor, the website, ASDC’s hotline, and every family. This is an especially and ASDC biennial family conferencimportant topic when it comes to fami- es. Through full access to language, lies with Deaf and Hard of Hearing chil- our children and our families have the dren. While we know it is important to greatest opportunities to share in each have community and school support other’s lives. in helping to raise healthy, successful My hope is that you look forward to and well-adjusted children, even more each issue and that you share it with important is the support, security, love other parents, educators, and profesand nurturing within the family. In sionals. If there is a particular topic this issue, you will find all kinds of arti- that you would like to have covered in cles written by professionals and ASDC upcoming issues or if you would like to families who believe in the bonds of write an article, feel free to contact me family, the support of role models, the at email@example.com.
Correction: Author credit for the article, Communication and Language: What’s the Difference? in the Spring/Summer 2012 issue should have been attributed to Matthew S. Moore and Linda Levitan.
ASDC Honors Joe Finnegan While hosting an exhibition booth at the National Association of the Deaf last July, ASDC board members honored past board member Joe Finnegan for his outstanding service to ASDC. Thanks, Joe!
Today’s Family is Diverse!
“Family is the most basic nities and our Nation safer element of self-identificaand more civilized.” tion for young children; We recognize that having it shapes and forms their a Deaf or Hard of Hearing sense of self and who child in a hearing family is they are in the world. It is a characteristic of family important for students to diversity. Jodee Crace see their families reflected In Handbook of Socializain the world around them, tion: Theory and Research, while at the same time it is written, “The diversity see the diversity of families that also of family structures in the Western exists in our communities” (as listed world is arguably greater today than at www.welcomingat any other point schools.org/family- Families provide a loving in history. Infants diversity). are being born into environment where In 2002, Presian array of different dent George W. children can flourish; family types, some of Bush issued a and they help ensure which were not even National Family that cultural traditions recognized as existWeek proclamation ing as recently as 50 and timeless values saying, “Families years ago.” are passed on to future provide a loving Family educaenvironment where generations. tion includes skilled children can flourproviders knowledgeish; and they help able in the family’s ensure that cultural traditions and culture and language, including competimeless values are passed on to future tence in family dynamics. It requires a generations. Strong families play a strong ability to connect and be prescritical role in developing the charac- ent with the family at that time. Someter of our Nation. They teach children times one has to have lived in similar important standards of conduct such experiences to be able to connect with as accepting responsibility, respecting another family’s needs. others, and distinguishing the differIn the realm of diverse families, ence between right and wrong. By there are parents with a Deaf or Hard helping America’s youth to grow into of Hearing child and a hearing child. mature, thoughtful, and caring citi- There are Deaf parents of hearing zens, families help make our commu- children (CODA). And there are also 4
Deaf parents of Deaf children or Deaf grandparents, and others. We are all diverse, indeed. There are plenty of publications about Deaf people as a part of a particular culture due to having shared experiences, values and language. How about we include Deaf and Hard of Hearing children in the ‘family diversity’ category instead of the ‘disability’ category? How can we promote this healthy perspective of Deaf and Hard of Hearing children in a hearing family within the family diversity framework? We can educate ourselves how other families work with diversity, and how they continue to strengthen each other and celebrate their children. We can ask for understanding of why assumptions remain about the Deaf and Hard of Hearing children’s supposed “inabilities”—and how we can remove such attitudinal barriers.
Strengthening family relationships requires the commitment and cooperation of all family members, and the healthy facilitation of providers and educators. It is ASDC’s goal that all families are supported, and that we have resources to empower parents to embrace their Deaf and Hard of Hearing children as diverse family members.
ASDC has a new videophone number! (202) 644-9204
ASDC’s Monthly E-Mails The ASDC monthly e-mail 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 firstname.lastname@example.org.
Learn More About Name Signs To explain how a name sign is chosen in the Deaf community, professor and researcher Sam Supalla wrote The Book of Name Signs. Revealing fascinating insights about the origins of American Sign Language name signs, Supalla shows how they serve the same function as given names used in the hearing community. He also details how the history of the name sign system dates back to the early years of deaf education in America. The book includes a list of more than 500 name signs one can choose from, plus illustrated charts. Learn more about the history of name signs through this enlightening book. Visit www.dawnsignpress.com to order a copy today.
Professionals in Deaf Education
ASDC seeks articles from professionals who work with Deaf children or students. The winter issue will take a look at auditory tools. If you have a story, submit it to Editor Tami Hossler at email@example.com by Jan. 15, 2013.
Let’s Run the Race of Life Together
By Donald Grushkin, Ed.D. Last summer, during the Olympics, my Facebook friends “shared” a picture of Oscar Pistorius, the double amputee Olympic runner. The picture (which can be seen at http://yhoo.it/Uaf34h) shows Pistorius, crouched in a running stance, looking down with a broad, whitetoothed grin at an angelic-looking little girl toddling along on her blades just like the ones Pistorius has. The picture simultaneously evokes a twinge of sympathy for this little girl as well as a frisson of happiness at seeing Pistorius —ready to show this girl she can do anything she aspires to. As a Deaf person, I’m compelled to look at Pistorius’ eyes, and in them, I see yet another story. Pistorius, in looking at the girl, is also seeing himself in her—he knows the struggles, frustrations, and joys this girl will experience as she grows up, since they will be similar to the struggles, frustrations and
joys that he himself has experienced. He is smiling that broad smile not only in encouragement of this girl, but at his younger self, represented through this girl, as if saying, You, too, can be like me; don’t let anyone tell you otherwise because you can be all that you can and want to be. I envision Pistorius maintaining contact with this girl throughout the rest of their lives, acting as a mentor, and even as something of an unofficial “uncle” to this girl. He will do this because he knows who she is and what she will experience, and wants to share with her ideas, tips and strategies from his own lifetime of experience. He wants to help minimize the frustration and negative feelings she might develop about herself as a result of not being like everybody else. How is it I’m able to see all this in that one picture? The reason is simple. It is the same impulse that I and many Deaf persons have upon seeing a Deaf child, especially one with hearing parents who have no contact with other Deaf people regardless of whether the child has a cochlear implant, hearing aid, is oral or uses cued speech or signed English. In these children, we see ourselves, and just like Pistorius, we know what these children are experiencing and will experience as they grow and mature. We, too, want to help these children devel7
op a sense of confidence and happiness about themselves as Deaf people, and to see them grow up to be fully functional members of society. Returning to Pistorius’ picture, the girl is obviously too young to have asked Pistorius for his advice. It is clear Pistorius was put in contact with the girl through some third party, and most certainly with her parents’ wholehearted approval. Although not shown, I see the girl’s mother somewhere out of the frame of the picture, smiling as she watches Pistorius engage with this child and share of himself and his spirit with her. In one Facebook thread about this picture, a commenter suggested that it should be shared with hearing parents of Deaf children, so that they might “get it” regarding why Deaf people feel
it is so important for Deaf children, and especially those with hearing families, to have positive contacts and interactions with Deaf adults like ourselves. I agree—if it’s almost immediately evident, even to uninitiated outsiders, that the child in the picture would benefit from her interaction(s) with Pistorius, then they should see that the
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same should also be true of Deaf children with Deaf adults. However, there is a major difference between Pistorius and culturally Deaf people. Pistorius speaks the same language as the society around him, while living among people who have feet. He is not speaking to the child in a language different from that of the parents. He is simply attempting to help teach the child how to thrive, to live as a person who walks with blades rather than feet, and to live as he does. Yet, this is exactly what we Deaf people want to do with these young Deaf children that we encounter: we want to help teach them how to thrive as a person who primarily use their eyes for interactions with the world instead of their ears; to live as we do. For culturally Deaf people, Deaf culture has evolved (as all cultures ultimately do) as a means of providing instruction in daily living strategies, especially when it comes to maximizing and navigating the visually-oriented world we live in as Deaf people, as well as navigating the auditory-oriented world of hearing people. We do not wish to take the children away from their parents; we want to see them
grow into healthy, functional, bicultural (if not multicultural) members of Deaf and hearing communities to which they belong. But what do we see happen for many Deaf children? Even though there are groups and agencies that do advocate for the use of sign language from the very beginning in a Deaf child’s life, believing (correctly) that this fosters a fulfilling and well-balanced life, too many misguided medical professionals and educators have unfortunately instilled a sense of guilt and perhaps shame in parents of Deaf children about sign language and the Deaf community. Parents are inf luenced to think that sign language needs to be avoided, even when there is no research to support that, and much research that contradicts this idea. As a result, there are countless stories within the Deaf community, including my own, about the communicative, academic and social harms that the limited (if not complete lack of) communicative access to family interactions created and could have been prevented through visual language like AS). While the intent is to integrate the Deaf child into the family’s life as well as society, the opposite result typically occurs: an emotion9
al and social barrier between the child and his or her family often develops, and Deaf people often feel somewhat marginalized from the greater society. Yet, for those Deaf people whose hearing parents learned and used sign language and involved their children in the Deaf community, they tend to have significantly healthier and closer relationships with their parents and are more positively engaged in society.
So, it stands to reason that if exposure to a healthy, functional adult without feet is a good role model for this child without feet, then exposure to a healthy, functional Deaf adult should be a good role model for a Deaf child, right? One would think so, but then again, it seems where Deaf people are concerned, logic often seems to run away faster than Pistorius’ Olympic rivals. Donald Grushkin is an associate professor of Deaf Studies at California State University, Sacramento. Born Deaf, he was raised orally before attending the Model Secondary School for the Deaf and Gallaudet University. He lives in the Bay Area with his wife, two children and a dog, all hearing. His vlogs can be seen at www.deafhooddiscourses.com.
Seen Us Lately? Check out ASDC’s new and improved website at www.deafchildren.org!
ASL Improves the English Literacy and Communication Abilities of All Children By Marilyn Daniels, Ph.D. Today most Deaf children are in mainstream settings where generally their classmates do not know sign language. If more hearing children in these public schools had some knowledge of ASL, even a rudimentary capability, they could communicate with their Deaf classmates and also enhance their own English literacy. The procedures outlined in my books are reminiscent of Deaf education in the 19th century at the American School for the Deaf. Founder Thomas H. Gallaudet believed there was a great advantage in presenting language to children in a variety of forms. He wanted his students’ hearing siblings to learn to sign. As MRIs and CAT scans now show, we know that what Gallaudet believed about the benefits of knowing multiple languages, nearly 200 years ago, is true. Among many physiological reasons ASL presents an educational advantage for all children, there are five significant advantages. Multiple Memory Stores: Each language we know is located in its own memory store in the brain’s left hemisphere. A memory store is established after about nine hours with ASL signs. When a hearing child is presented with a spoken English word like “book” and an ASL signed version, the youngster
has two separate memory stores to search. Visual Right-Brain Involvement: Because ASL is visual and a child must be looking at the signer, there is a great deal more use of the right brain than when a word is merely spoken. This presents an advantage for all children, as more than 50% of the brain is devoted to visual processing. It also specifically benefits right-brain learners. Iconicity of Signs: Many of the signs that young children use are iconic—the beginning words of a language that look like what they mean. This offers visual clues for a child. Muscle Memory: Muscle memory refers to the memory found in the signer’s hand. His/her hand will recall how this sign feels and this will help him or her retrieve the word’s meaning. Active Involvement of Child: When children sign, they are actively involved in the communication; they cannot just passively listen. They must visually attend or they will miss the message. Marilyn Daniels is the author of three books about using ASL with hearing children. Signed copies of her two newest books may be purchased for $20 each. For information, e-mail firstname.lastname@example.org. 11
Conference Schedule Wednesday Registration and Opening “Sample Our City” Family Fun Night! Families will sample menu items from Frederick area restaurants, learn about Frederick cultural venues, shop at local merchant booths, and enjoy activities such as face painting, a petting zoo, games, and more.
unique experiences of deaf youth and siblings will be addressed through art, drama, and team building activities; sibling workshops; and games, field trips, and more.
Evening Activities: Family oriented activities each evening offer family and social time. On one evening, participants will explore Frederick’s sights, shops, Thursday through Saturday – galleries, and parks; enjoy Parent Workshops: Three dinner on their own; and full days of concurrent experience living history workshops on issues, choices, through Ghost Tours. consequences, and the many available resources that can Exhibit Hall: Sponsors, profoundly impact the businesses related to any of the development of deaf or hard of conference key areas, hearing children. Professionals educational institutions and will present in each of the five organizations, and local key areas covering such agencies and vendors will diverse topics as family display information and dynamics, cochlear implant products in the Exhibit Hall. effective use, language Museum: MSD’s Bjorlee development, secondary Museum is packed with conditions, education choices, historic information and community support options artifacts relating to the school, and access, and many more. Frederick, the Hessian BarChildren’s Program: A racks, multiple wars, and comprehensive three-day more. program of planned, Sunday morning – Final supervised activities Nancy O’Dell, Mom, TVfor Host, breakfast and Conference Best Buddies Board Member children and teens ages 0 to 21 and Philanthropist, Wrap-Up; airport withgroups. Saskia Vogt, age 8. in four age The transportation provided. informational needs and
Toys“R”Us® Unveils 2012 Edition of the Toys“R”Us Guide for Differently-Abled Kids® Toys“R”Us, Inc. announced the release of the 2012 edition of its annual Toys“R”Us Toy Guide for Differently-Abled Kids®, an easy-to-use toy selection resource for those who know, love and shop for children with special needs. This year, mom, TV host and philanthropist Nancy O’Dell appears on the cover alongside Saskia Vogt, a four-year-old girl with Down syndrome. “I have a strong personal connection and commitment to the special needs community, so I am proud to partner with Toys“R”Us in supporting this valuable resource,” said O’Dell. “Growing up, my best buddy was my Aunt Ellen, who was born with Down syndrome. Because of my memories of her, to this day she remains my inspiration for promoting inclusion for individuals of all abilities. In raising awareness of the Toys“R”Us Toy Guide for DifferentlyAbled Kids, I hope to help moms, dads, aunts, uncles, siblings and friends of differently-abled kids create magical play moments like those I shared with my own Aunt Ellen.” O’Dell has long served as an advocate through her involvement in charitable organizations like Best Buddies, as well as Muscular Dystrophy Association and National Down Syndrome Society. For nearly two decades, the Guide has served as a trusted resource for family, friends and caregivers of chil-
dren with special needs, providing a carefully selected assortment of toys that can help kids explore new worlds and achieve personal victories. Each of the nearly 100 toys featured in the 64-page resource has been selected in partnership with National Lekotek Center, a nonprofit organization dedicated to making play accessible to children of all abilities. Each item featured helps children with physical and cognitive disabilities develop critical skills through the power of play, including fine and gross motor, visual, language, creativity and more. In addition to toy recommendations, parents will also find value in the Guide’s “Top Ten Tips for Buying Toys,” as well as “Safe Play Tips for Children with Special Needs,” which were created with guidance from leading safety and special needs organizations to help avoid playtime injuries. “It’s a wonderful thing to bring joyful play experiences to children of all abilities, whether it’s helping them become an amazing superhero, an adorable princess or a fearless ninja through the magic of play.” said Sloane Lucas, Director, Corporate Philanthropy, Toys“R”Us, Inc. “The Toys“R”Us Toy Guide for DifferentlyAbled Kids is a labor of love for the Toys“R”Us family that we’re proud to have provided to our customers for nearly two decades. We’re so excited to share the 2012 edition.” 13
Since 1994, Toys“R”Us has partnered with the National Lekotek Center to assess the play value of toys for differently-abled children. The organization assigns at least two skillbuilding icons to each toy that appears in the Guide. These color-coded symbols help users easily identify toys most suitable for the child they’re shopping for by signifying the specific benefits of each item. At Toysrus.com/DifferentlyAbled, shopping by skill is even easier, as visitors can narrow the selection of nearly 100 toys featured in the print edition of the Guide to those more appropriate for the special needs child in their lives by simply clicking on any of the ten skill-building icons. The application will then show users a refined list of toys that can help a child develop that specific skill. Also, for shoppers who prefer to browse the Guide from the comfort of their own home, this dedicated microsite offers a digital, flippable version in both English and Spanish. Additionally, through its various social media channels, including Facebook, Twitter, YouTube and Pinterest, Toys“R”Us will provide its fans and followers with product highlights from the Guide throughout the year, as well as safe play and toy-buying tips for children with special needs. The company will also offer exclusive and engaging content, including special video messages from Nancy O’Dell, behind-the-scenes footage and photos from the cover shoot, toy trivia and more. 14
Through the Toys“R”Us Children’s Fund, a public charity affiliated with the company, Toys“R”Us, Inc. has long supported the special needs community. Organizations that receive support include: American Society for Deaf Children, Autism Speaks, Best Buddies, Children and Adults with Attention-Deficit/Hyperactivity Disorder, Eva’s Heroes, HollyRod Foundation, Muscular Dystrophy Association, National Down Syndrome Society, National Lekotek Center, National Organization of Parents of Blind Children, Special Olympics, Spina Bifida Association and United Cerebral Palsy. About Toys“R”Us Toys“R”Us, Inc. is the world’s leading dedicated toy and juvenile products retailer, offering a differentiated shopping experience through its family of brands. Merchandise is sold in 873 Toys“R”Us and Babies“R”Us stores in the United States and Puerto Rico, and in more than 625 international stores and over 145 licensed stores in 35 countries and jurisdictions. In addition, it exclusively operates the legendary FAO Schwarz brand. Additional information about Toys“R”Us, Inc. can be found on Toysrusinc.com. Published annually, this complimentary guide is available now in Toys“R”Us® and Babies“R”Us® stores nationwide and online, in both English and Spanish, at Toysrus.com/DifferentlyAbled.
The Affordable Care Act: What It Means for Individuals with Disabilities can no longer deny or exclude coverage By now, you have to anyone based on probably heard a pre-existing condiabout the Supreme tion. Furthermore, Court’s highly anticinsurers will not be ipated ruling on allowed to charge President Obama’s higher premiums health care reform for these individuals legislation, the to get coverage. Affordable Care Act. This is perhaps Much discussion the most signifihas focused on what this ruling means cant change impacting individuals with for the general public; however, little disabilities, especially those who have attention has been devoted to what previously been denied private health it means for people with disabilities. insurance coverage. Starting in 2014, Below is a summary of the act and how if you can afford private health insurit affects individuals with special needs. ance, you can get private health insurance. No Pre-Existing Condition Exclusions To bridge the period between now Currently, insurance policies cannot and 2014 when the law takes effect, deny or exclude coverage to any child the federal government has set up the under age 19 based on a pre-existing Pre-Existing Insurance Plan to provide condition. This means that children on coverage for eligible citizens who have a parent’s policy must be granted cover- been uninsured for 6 months due to a age. pre-existing condition. For more inforIf you have health coverage through mation on this program, visit www. your employer, the plan is allowed to pcip.gov. exclude coverage temporarily for preexisting conditions, including disabili- No Lifetime or Annual Limits ties, usually for no more than one year on Coverage and waiting periods for coverage of preUnder the ACA, starting in 2014, existing conditions starting in 2014 insurance policies can no longer impose will be limited to 90 days. lifetime or annual dollar limits on coverage. Previously, once you hit your maxiPre-Existing Conditions in 2014 mum benefit amount, you would have Starting in 2014, insurance policies to pay for all medical services out of By Melissa Stuart
your own pocket or have supplemental insurance coverage. Elimination of this cap on lifetime and annual benefits is significant for those with frequent and expensive medical costs. This provision applies to all policies in the new insurance exchanges and non-grandfathered policies. To see how your policy will be affected, contact your insurance carrier or agent.
bilitation and mental health services, pregnancy and newborn care.
Extension of Dependent Coverage Currently in effect and unaffected by the Supreme Court’s decision, children can stay on their parent’s insurance policy through the age of 26. For individuals with disabilities, this coverage may be extended throughout adulthood depending on state law and policy rules for dependent coverage.
Expansion of Programs There are many provisions in the ACA that include funding for the expansion of programs for people with disabilities. For example, the ACA includes new grants for Medicaid waiver programs to support state initiatives to provide greater community-based services. The ACA, for the first time, makes private insurance a viable option for individuals with disabilities. Scholars speculate that the availability of private insurance may lead to less reliance on federal benefits like SSI, which are often a pre-cursor to Medicaid. Choosing to go with private insurance or Medicaid should be based on an informed decision looking at health care needs and financial resources and goals. Information in this article cannot replace consultation with an attorney specializing in special needs issues. Reprinted with permission from http:// bit.ly/UahLa4. Melissa Stuart is an associate attorney at Cohen & Malad, LLP in Indianapolis. Nothing in this blog post should be construed as legal advice. Information in this article is not intended and cannot replace consultation with an attorney specializing in special needs issues.
Access to Preventative Care Services The ACA requires health plans to offer coverage for certain preventative services without charging the consumer a co-pay, coinsurance, or a deductible. This means that some preventative services, like an annual physical exam, are now available at no cost, so long as you have health insurance. This is important, as people with disabilities may have avoided these types of services in order to conserve their health care resources needed for other services. Coverage for Essential Services Starting in 2014, new individual policies and plans purchased through the insurance exchanges will have to cover essential benefits like hospitalizations, doctor visits, prescription drugs, reha16
Policies Cannot Be Cancelled Policies cannot be cancelled if it is found that the consumer made a minor error on the application. Furthermore, insurance companies cannot rescind the policy or decline to renew the policy if an individual becomes sick.
ASDC Annual Appeal 2012 Dear ASDC Family & Friends, Family is the cornerstone of shared values, memories, and love. With these lasting virtues, we remain committed to embracing, encouraging, and enriching families with Deaf and Hard of Hearing children. The American Society for Deaf Children (ASDC) strives to celebrate all families. With that in mind, we are dedicated to providing necessary resources and assistance to those families. With your donation, we continue to foster invaluable partnerships in order to provide essential services and support to these families. Below is just a sampling of the support that ASDC provides: • The Endeavor (three times per year) • A network with families across the nation • Collaboration with organizations and professionals to improve the future of the children we serve • Access to our advocacy team • Scholarships to attend ASDC’s biennial conference • Valuable resources through ASDC’s website, www.deafchildren.org • A 24-hour hotline at 800-942-2732 • A monthly e-mail blast containing up-to-date information • Easy access to ASDC’s Facebook page The ASDC board is composed of 17 dedicated, diverse, and talented parents of Deaf and Hard of Hearing children, educators, and professionals from across the U.S. The board works diligently to maintain ASDC’s high standards and excellent reputation as a parent-helping-parent organization, ensuring that services and resources are readily available to families and professionals. One of ASDC’s most highly anticipated and celebrated events is our biennial Family Conference. ASDC is partnering with the Arizona School for the Deaf and Blind in hosting our upcoming conference in Tucson on June 26-30, 2013, with the theme of Embracing your Whole Child. It is always inspiring to see families come together and celebrate our and your Deaf and Hard of Hearing children. Since our establishment in 1967, the American Society for Deaf Children has grown exponentially. Our growth would not have been possible without the continued support and generous contributions from friends and supporters like you. Please make your tax-deductible gift to ASDC today. By supporting ASDC, 17
you are investing in the future of Deaf and Hard of Hearing children and their families. Your contribution of $25 or more will make a tremendous difference towards supporting and empowering families of Deaf and Hard of Hearing children. If you would like to donate via credit card, you can do so via PayPal, or go to www. deafchildren.org and click on â€œDonateâ€? in the bottom right corner of the website. Checks may be made payable to: ASDC 800 Florida Ave. NE #2047 Washington, D.C. 20002 Heartfelt thanks for your continued support and commitment to an enhanced quality of life for Deaf and Hard of Hearing children and families throughout America. Warmest regards, Jodee Crace Jodee S. Crace, M.A. ASDC President
ASDC Referral Hotline Are you a parent or professional with a question, comment or concern? ASDC has a referral hotline. Our trained staff is available to answer your questions. Just call (800) 942-2732 or (202) 644-9204 videophone.
Empower Your Family with the Power of Double Pride By Sheila Jacobs, MFT Double Pride™ Home Program offers various family-friendly programs to assist each family in becoming a successful “Double Pride Family.” These programs include workshops, retreats, after-school programs, camps, plus hearing and deaf siblings programs. Double Pride has a five-generational view of a deaf child’s family experience, beginning with each deaf child who grows up with hearing parents and hearing grandparents. Once the deaf child becomes a deaf adult, he/ she often marries another deaf person from a hearing family. This deaf couple usually has hearing children, the fourth generation of Kodas (Kids of Deaf Adults) who grow up to produce the fifth generation of Godas (Grandchildren of Deaf Adults). As a result, Deaf individuals are sandwiched between four generations of hearing relatives: two generations that came before, their hearing parents and hearing grandparents, and two generations that come after, their hearing kids and hearing grandkids. Double Pride seeks to link each of these generations together with successful Double Pride Family Communication tools and programs. Double Pride has co-sponsored two successful “Deaf and Hearing Adult
Siblings Retreats” in Fremont, Calif., in 2011 and 2012. The visionaries of the Siblings Retreat were Sheila Jacobs, Double Pride CEO, and her deaf sister, Lisa Jacobs, who works at Gallaudet University. They are planning to add a teen program to the Third Deaf and Hearing Siblings Retreat scheduled for June 2013 on the California School for the Deaf campus in Fremont. Double Pride works with teachers to help them implement various strategies in their classrooms to build more successful bridges between their deaf students and their hearing siblings. Teachers design homework assignments around activities that enhance the communication between siblings, such as baking cookies to learn various mathematical concepts of measurement. Double Pride refers to this as the Attachment-Oriented Deaf Education Curriculum. Double Pride also encourages teachers to show their deaf students how to teach their hearing families/siblings 10 new signs per week for one month. That becomes 40 new signs in four weeks which becomes 400 new signs in 10 months which results in 4,000 Continued on page 38 19
Strategies for Working With Children with Autism: Social Stories ™
By Raschelle Theoharis, Ph.D., Gallaudet University, Deborah Griswold, Ph.D., University of Kansas and Christina Yuknis, Ph. D., Gallaudet University This is the third article in a series that discusses strategies for working with children who are deaf and have autism. The first article provided an overview of strategies to support communication at home and in the community. This article will provide an in-depth description and strategies for using Social Stories™, developed by Carol Gray. There is a significant amount of research related to Social Stories™ and children with autism, proving them to be an effective tool (Simpson, et al., 2005). However, we know little about effective interventions specifically for deaf children with autism. Though the research is lacking, the components of Social Stories™ may provide the support deaf children need in specific situations. Social Stories™ are written using a formula of descriptive, perspective, directive, affirmative and partial sentences (Gray, 2000). Parents will find resources and examples of this unique strategy at www.thegraycenter. org/social-stories. Deaf children with autism face significant challenges in three areas: communication, behavior, and socialization (American Psychiatric Association 20
[APA], 2000). Every day, whether at home, in school, or out in the community, is filled with numerous social activities (i.e., greeting friends, following instruction, and turn taking) where deaf students with autism are expected to interact and participate. These activities require skills from all three areas. Social stories provide text and visual support for deaf children with autism as they interact with others in a variety of settings and situations (Barry & Burlew, 2004). The stories are written to provide an individual with support through transitions or changes in routine, provide insight about others’ perspectives, and present alternatives to problem behaviors (Kuoch & Mirenda, 2003). Overview of Social Stories™ Social Stories™ are simple stories written from the child’s perspective that describe a specific situation or event through both print and pictures (Spencer, Simpson, & Lynch, 2008). The
stories illustrate, for the deaf student with autism, positive and appropriate social behavior. Language used in social stories follow a specific format (typically 5-10 sentences): description of the situation, directive statements (let the child know how to appropriately respond), other people’s perspectives and feelings, and a description of typical behaviors that may help the situation (Gray, 1995). It is important to note social stories are not used in isolation; they should be included with other strategies (Spencer, Simpson, & Lynch, 2008). A critical component of the Social Story™ is to encourage a child (The Gray Center, n.d.). The Gray Center for Social Learning and Understanding provides an informative and parent-friendly website (www. thegraycenter.org/ social-stories). There are video clips that provide information about the purpose and use of Social Stories™. Some of the clips have a button to display the transcribed text. The website also provides Social Stories™ examples. Classroom Application Social Stories™ can be written by any individual familiar with the child and the circumstances that are to be addressed (Simpson, et al., 2005). Teaching the appropriate behavior, helping a student prepare for a new activity, skill, event, or
a routine by using social stories is facilitated by repeating the reading or signing of the story several times in preparation for the skill or event. Pictures or icons illustrate the story, providing visual support. The author writes the social story using language to match the child’s level of understanding following the prescribed formula. Pictures (drawings, clip art or photographs) are then added to provide visual representation of the concepts. Teachers read the story with the child, making sure he understands the concepts and the skills being addressed. Next, depending on the child, the child can read the story independently, read it aloud or sign the story, or have the story read or signed to them. Some may need to have the story read to them or read the story several times a day. The need for the social story decreases as the child begins to use the appropriate behavior. Finally, the teacher provides the child with opportunities to practice the skill. Throughout the school day, the teacher will prompt the child to use the skill focused on in the story whenever appropriate and praise the child for using the appropriate behavior (Spenser, Simpson, & Lynch, 2008). Home and Community The flexibility of Social Stories™ allows them to be used in any setting, 21
lenging social situations while working to improve communication, behavior, and social skills. In addition, they can assist with bridging the gap between home and school. The next article in this series will discuss using power cards to continue supporting their development. to address a myriad of events. They can be used at home to help a child prepare for bedtime, get ready for school, or make a scary situation less fearful. For example, if a child is afraid of a dog, reading the social story about meeting or visiting a dog may help the child prepare for seeing the dog and adjusting to the dogâ€™s behaviors (dogs bark, dogs lick people and so forth). If a child struggles with a concept at home and school, the same social story can be used. Families can adapt social stories teachers use to fit their situations at home. Finally, new social stories can be developed for families to use at home and in the community. It is important for families to remember to follow the same steps as in the classroom application: the child will need to be allowed to read or have the story read to them often and have opportunities to practice the skills presented in the story. The child will need to be praised often for choosing to use the appropriate behavior in the given situation. Conclusion Social stories are developed to support each individual through chal22
References Barry, L. M., & Burlew, S. B. (2004). Using social stories to teach choice and play skills to children with autism. Focus on Autism and Other Developmental Disabilities, 19(1), 45-51. Gray, C. (2000). Writing social stories with Carol Gray: Accompanying workbook to video. The Gray Center for Social Learning and Understanding. Jenizon, MI: Future Horizons, Inc. Gray, C. (1995). Teaching children with autism to â€œreadâ€? social situations. In K. Quill (Ed), Teaching children with autism: Strategies to enhance communication and socialization (pp. 219-241). Albany, NY: Delmar. The Gray Center for Social Learning and Understanding. http://www.thegraycenter. org/social-stories Kuoch, H., & Mirenda, P. (2003). Social story interventions for young children with Autism Spectrum Disorders. Focus on Autism and Other Developmental Disabilities, 18(4), 219-227. Simpson, R. L., de Boer-Ott, S. R.; Griswold, D. E. et al. (2005). Autism Spectrum Disorders: Interventions and treatments for children and youth. Thousand Oaks, CA: Corwin Press. Spencer, V. G., Simpson, C. G., & Lynch, S. A. (2008). Using social stories to increase positive behaviors for children with autism spectrum disorders. Intervention School and Clinic, 44(1), 58-61.
Teaching While Deaf: Understanding Student Situations By Joseph Santini It is vital for teachers to recognize unique aspects of Deaf students’ experience, especially in the mainstream. This can be tough for a teacher who hasn’t personally experienced what Deaf people do on a daily basis, or doesn’t know Deaf adults who can explain their experiences. This lack of insight is often exacerbated by the distance inserted between teacher and student through the use of an interpreter, paraprofessional, or a physical aide. Below are some of my observations from five years of working in the mainstream in addition to a lifetime as a mostly mainstreamed student. 1. Eyes get tired. Kids in mainstream programs using interpreters sometimes go into zombie mode; their eyes get exhausted1 and they can no longer make the muscles function (this is especially true with the high-glare halogen lights used in many public classrooms).2 I certainly did, and I have students who do. Even kids with
teachers who are themselves Deaf will go into zombie mode. Watching interpreters or signing for long periods of time takes practice, and even then, the eyes still need a rest. Looking is active. This can have a positive effect; active watchers are more likely to process and analyze information. What to do about this? When I see kids go into zombie mode— and I don’t know how easy it is for people to identify this, but I can always see the eyes glaze over— I encourage them to go get water or go to the bathroom. A couple minutes of eyerest can make sure the student is engaged for the rest of class. Ignoring the problem means the student may miss half the information provided. Another solution is to bring in lamps and use that lighting instead, if legal in your area. Such a solution may not be permissible during state examinations. 2. Kids with limited communication at home have limited power. I applaud parents who learn ASL. Unfortunately, the U.S. government 23
will spend thousands on experimental audiological equipment that works on a functional level for less than half of the recipients. They will not spend a far smaller amount to help parents learn a language that will last forever and works for all Deaf kids. There is no Deaf student who cannot learn ASL 100%. This is why I support the use of both languages in the mainstream. Until the student reaches the age of complex language use, it’s tough for a teacher to determine how functional those audiological aids are on a practical level, especially in busy classrooms with heated discussions. I have seen students graduate with and without benefit, and none have complained about knowledge of ASL. But many Deaf adults have admitted that, while “successful” in the mainstream, there was much they missed by depending on hearing aids alone. When kids can’t communicate at home (or at school), they often have less power to control their daily lives. This past summer I had students come to me desperate because parents scheduled appointments without consulting with them on days when they had tests. Further, when students don’t have the ability to communicate, they are often infantilized at home.3 I’ve had parents tell me summer school wasn’t important. Behind that is the unspoken assumption that the student himself is limited. I was fortunate to have parents who insisted on including me in scheduling appointments and ensured that I had the most opportu24
nities to achieve. How to solve this? Teachers are sometimes the only voice in support of students having increased responsibility. Students need to be independent yet supported. Discussing strategies to accomplish this is very important. Sometimes parents and I will discuss these things in depth prior to the IEP. I have found that parents who understand the importance of independence are more likely to advocate at their child’s IEP meeting. Giving parents opportunities to learn ASL, to help bridge the communication gap, is also important. It’s also equally important to encourage kids to bridge those communication gaps. I have students who think there’s no point, or who are so overwhelmed by the power dynamics of the family that they don’t think of trying to engage in dialogue. Helping students figure out how to frame their
needs is a critical skill. 3. Hearing aids and audiological aids aren’t always pleasant. Mine often sound like someone screaming at me. They demand attention. I often take off my hearing aids to think and process. I’ve discussed this with my students; about one-third of them report no problem at all; others report lots of problems. The design and structure of the hearing aid/implant itself is also an issue. When you are a student paying attention to a speaking teacher and suddenly your left ear goes explodes with sirens, you need to make a decision: Do you announce it’s time to change the battery and you have to leave class or do you decide to sit there and endure the sirens so you don’t miss a point? Is sitting in front REALLY the best place for the student? It may not be for all people, or with all hearing aids; some now have technology that isolates voices, or automatically adjusts volume. The student might find sitting in the center or on the side more beneficial. Or they might want to be in back, because it helps them visually locate other students, the teachers and so forth. Talking to students about their needs and experiences is vital. Asking students what works well for them gives them independence and empowers them to begin the process of
analyzing those needs. 4. The parent’s perspectives, prejudices, and problems with Deafness sometimes extend to the student. When a parent has an 18-yearold, six-foot-tall Deaf son and she or he requires that person to go on the little yellow bus from mainstream school “for safety reasons,” what is actually happening? Is the student really more “safe,” or is it just the parent’s worry that’s assuaged? Even more practical, what happens with that bus? Buses sometimes don’t show, and students miss class. Buses need to leave on time. Those fears spill over into other areas of the students’ life—and when you grow up with that kind of hemmed-in limitation, you often don’t question it. The result often is a student, already in need of more world knowledge, having even less. How to deal with these fears? Being a Deaf teacher in a mainstream school has helped me enormously. Parents see an educated, capable Deaf adult, and often ask me how I got that way. It’s tough to be a model. It’s important to remember all Deaf kids are different. Some do warrant such fears. Sitting down with parents and students and helping them engage in dialogue is vital. These are all issues I encounter and experience as a teacher. There are no easy solutions. Everything is a process, 25
References 1 Waech, 2007. http://new.vawnet.org/ Assoc_Files_VAWnet/DeafAtoZ.pdf 2 99% Invisible.http://99percent invisible.org/episode50deafspace 3 Johnson, 2010. http://www.wellsphere.com/hearing-loss-deafness-article/ one-of-deaf-education-8217-s-dirty-160secrets-8230/1207227
and the process will continue for the family and the Deaf student way past graduation. Recognizing this takes some of the pressure off. Even a tiny push to create better dialogue is a great step. Recognizing those small achievements makes the process even more beneficial.
Joseph Santini was born in New York City and graduated from Haverford College, the University of Bristol, and the City College of New York. He spent several years teaching Deaf adults and children in public school settings. He is now working on doctoral research at Gallaudet University in Washington, D.C.
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ASDC Supports the Ratification of CRPD Please join the efforts and contact your U.S. Senator to vote YES. By Barbara Raimondo, Esq. “The purpose of the . . . Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.” (CRPD Article I) The Convention on the Rights of Persons with Disabilities (CRPD) was adopted by the United Nations (UN) on December 13, 2006, and opened for signature on March 30, 2007. To date, 153 states (nations) have signed it and 90 have ratified it. President Obama signed it on on July 30, 2009 and submitted it to the U.S. Senate on May 17, 2012, for ratification. On July 26, (the 20th anniversary of the passage of the Americans with Disabilities Act [ADA]), the Senate Committee on Foreign Relations voted to send the CRPD to the Senate floor with a recommendation that it be ratified. Ratification will require a “yes” vote from 67 of the 100 Senate members. Will the CRPD require the U.S. to change the implementation of its discrimination laws, such as the Individuals with Disabilities Education Act and the ADA? No. The CRPD is not self-executing, “thus would not be directly enforced by U.S. courts or of itself give rise to individually enforceable rights”
(Executive Summary, U.N. Convention on the Rights of Persons with Disabilities, Treaty Doc. 112-7, page 2). The CRPD does nothing to change the implementation of existing American law. Will the CRPD require the U.S. to change the content of any of its laws? No. “[E]xisting law and practice would be sufficient to implement the convention fully in the United States” (Executive Summary, page 3). If our country’s laws and practices around disability rights will remain the same, what is the advantage to Americans of having the CRPD? “While Americans with disabilities already enjoy these rights at home, U.S. citizens and other individuals with disabilities frequently face barriers when they travel, work, serve, study, and reside in other countries. The rights of Americans with disabilities should not end at our Nation’s shores. Ratification of the Disabilities Convention by the United States would position the United States to occupy the global leadership role to which our domestic record already attests. We would thus seek to use the Convention as a tool through which to enhance the rights of Americans with disabilities, including our veterans” (President Barack Obama, Letter of Transmittal, Treaty Doc. 112-7). 27
Does the CRPD refer to sign language? Yes. For example: “States Parties [nations] shall enable persons with disabilities to learn life and social development skills to facilitate their full and equal participation in education and as members of the community. To this end, States Parties shall take appropriate measures, including “facilitating the learning of sign language and the promotion of the linguistic identity of the deaf community” (CRPD Article 24, Section 3).
“In addition . . . since 1975, the [Individuals with Disabilities Education Act] . . . and its predecessors have required that the United States ensure the provision of a free, appropriate public education to each child with a disability who, because of that disability, needs special education and related services. Through the IDEA, eligible children are entitled to appropriate special education and related services and supplementary aids and services.”
Does this mean that the CRPD requires deaf and hard of hearing children to learn sign language? No. The CRPD requires States Parties to “ensur[e] that the education of persons, and in particular children, who are blind, deaf or deafblind, is delivered in the most appropriate languages and modes and means of communication for the individual, and in environments which maximize academic and social development” (CRPD Article 24, Section 3). Existing law would apply: “Under the regulations implementing Section 504 [of the US Rehabilitation Act], which applies to educational programs and activities receiving federal financial assistance, and Title II of the ADA, public elementary and secondary school systems must provide children with disabilities with a “free appropriate public education” that is designed to meet the individual needs of children with disabilities as adequately as the needs of nondisabled children are met” (Executive Summary, page 54).
“The IDEA requires that, to the maximum extent appropriate to the needs of the individual child, he or she is educated in regular classes with nondisabled children and that removal from regular classes occurs only when education for the child with a disability cannot be satisfactorily achieved in the regular setting . . . An individualized education program team writes an individualized education program (IEP) that [among other things] identifies measurable annual academic and functional goals for the child . . . and a statement of the special education supplementary aids and services to be provided for the child” (Executive Summary, page 55).
The IEP team, including the child’s parents, individualizes educational services based on the child’s needs. IDEA does not impose an obligation on IEP teams to include any services that are not agreed upon by the IEP team.
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â€œEmbracing Your Whole Childâ€? ARIZONA STATE SCHOOLS FOR THE DEAF AND THE BLIND
June 26th - 30th, 2013 Tucson, Arizona
Save the Dates Now! The ASDC Biennial Conference provides families with five days of information and fun! Daytime workshops captivate parents while children participate in educational and recreational activities. Evening events bring families together, providing the opportunity to form new friendships and peer support. Alliances built and information gathered make this conference a once in a lifetime experience for families across the nation.
For additional information please contact: ASDC Conference Committee:
Please visit: www.deafchildren.org
WE BELIEVE ALL LEARNING SHOULD BE HANDS-ON. 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 32
Holiday Tips for Your Family The holidays often are challenging for families trying to make sure their Deaf and Hard of Hearing children are fully included. Below are a few tips that may help during the holidays. • If your child uses American Sign Language (ASL), consider hiring an interpreter for large gatherings. Sometimes, the interpreter may be provided at no charge to your family. • If an interpreter is not an option, establish a communication game plan for the day. At the dinner table, ask the family to take turns so that your child can be a part of the conversation. • Provide helpful tips to the extended family prior to the
events. Send them a courtesy e-mail with tips to help the day go well. One-on-one conversations are great. Use the technology you have at home to keep communication happening, even if it’s simply paper and pen. Enjoy the holidays!
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My Two Cents: Cochlear Implants By Rachel Coleman I used to feel sorry for children who had cochlear implants. I did. When I saw them it broke my heart because I really believed that their parents just didn’t understand deafness. I judged those parents. I assumed that the parents were looking for a quick fix to something that in my opinion didn’t require fixing. I said things like, “I would never do THAT to my child.” Aaron and I talked about giving Leah choices and we decided that she could choose to have an implant when she turned 18. We think that Leah was born profoundly deaf. We didn’t discover that she was deaf until she was 14 months old. When her deafness was diagnosed, we immediately started signing with her. It seemed the obvious choice…I mean, she was deaf. We never bought into the old wives’ tale that signing would delay our child’s speech. Many people warned us that Leah might never learn talk if we signed with her. I always laughed and said, “She’s deaf, she might never learn to talk anyway!” My concern wasn’t for my child’s ability to say words. I wanted much more than that! I wanted full connection and communication with my daughter. I wanted her to be a critical thinker. When Leah was seven, Leah asked for a cochlear implant. She had been going without hearing aids for a few years, because, as she put it, “They don’t work! They don’t help me. They just make my ears itch.”
Let’s just say there were a few things I had to get over…like realizing that some people out there might judge me, just as I had been so judgmental of others. (Ouch! Ouch! Ouch! Don’t you hate that one?) Leah has now been implanted for seven years, the same amount of time she had gone without hearing a thing. I have found that one of the BIGGEST misconceptions still floating around when it comes to choices in deafness is in thinking that sign language and cochlear implants are mutually exclusive. They are not. Actually it is our family’s experience that Leah’s success with her cochlear implant was because she was already fluent in American Sign Language* when she got her implant AND because we have continued to sign with her. We never stopped signing. (*She was also already fluent in written English by that time.) When someone receives a cochlear implant, there is a period of adjustment as the recipient begins to understand the sounds of the world around them. It was invaluable to us to have a full language (American Sign Language) 35
to communicate with Leah during this new learning period. We had full and complete communication as our child experienced the sometimes scary world of sound. Yes, our ENT told us to stop signing immediately after Leah’s implant surgery, which was baffling to me. “She just had major surgery and you want us to refuse to communicate with her through recovery? Her implant won’t be turned on for weeks and you want us to stop communicating with her?” To me, that sounded like a form of child abuse. We never stopped signing with Leah and we never will stop. Leah is a very successful implant recipient. We feel that these are a few of the factors that helped her to use it so successfully: 1. Leah chose to have an implant, it wasn’t something that was done to her. She was old enough to control the settings and she was old enough to ask to be “re-mapped” when she was ready for more sound. We viewed the implant as another tool to help Leah communicate, not the only tool. 2. Leah was already bilingual when she was implanted. She understood ASL and her written English was exceptional. She was reading beyond her grade level. With the addition of her cochlear implant she could simply focus on acquiring and improving her listening skills and pronunciation, because now she could actually hear 36
some things. She wasn’t trying to learn English with her cochlear implant, thankfully she was already fluent in it and her focus was entirely on learning what English sounded like and how to make those sounds herself. 3. We always focused on our child’s strengths. Prior to her implant, we did not do private speech therapy. Why? Simple. Because Leah couldn’t hear.) We didn’t need her to learn how to say words in order to connect and communicate because we all learned to sign. Speech is a skill that your child has a lifetime to acquire. Speech is not a language. Speech is one way to deliver a language. English is a language, American Sign Language is a language, but speech… speech is a skill. You want your deaf child to learn their first language before the age of 3 if possible. If they can’t hear, don’t waste your time and theirs trying to get them to learn a listened to, spoken language. Since Leah couldn’t hear English we didn’t try to get her to learn it through speaking. She learned it through reading and writing. (If your child is deaf, please read #3 until it makes sense. Do not get stuck with the thought that you “just want your child to talk.” Trust me, you don’t just want that. You want so much more for them!) 4. Language doesn’t delay language.
The fear of signing is ridiculous and thinking that a child will not talk because they first signed is as preposterous as saying, “don’t let your child crawl or they will never learn to walk.” Babies crawl before they walk and they sign before they talk. If your child has the ability to deliver a spoken language, they will acquire that skill whether or not you sign with them. If they happen to have a speech delay or a disability that gets in the way of speaking, then thank heavens you are signing with them and giving them a way to be understood. If your child’s speech is delayed, it is not the signing that delays speech… it is something else entirely, because communication doesn’t delay communication. Technology frequently changes and even fails. Cochlear implants can be rejected by the recipient. The implant may fail or simply never work at all. Batteries die and parts break. Programming can accidentally get erased. Sign language will never fail, the batteries will not die, you can use it while swimming, you never have to “turn it on” or struggle to locate it in the middle of the night. Sign language can get soaking wet and it’s always at your fingertips. Leah will always be deaf. Her first language is American Sign Language. She has learned English as a second language through reading and writing. With her cochlear implant, Leah has learned how to pronounce words and to understand English when it is spoken to her. She is a child who has it all. If you are considering implanting your deaf child, my recommendation is
this – do not put all of your eggs in one basket. Give your child EVERY opportunity to communicate. Give them many tools! Cochlear implants do not work for all children, implants are not always successful and should not be portrayed as a “cure” for deafness. Similarly, hearing aids do not work for all children, they are not always successful and should not be portrayed as a “cure” for deafness. You might want to consider that deafness doesn’t need a cure. Leah recently saw her ENT, the same one who had asked us to stop signing with her seven years ago. He asked her this time if she would like to implant her other ear, since she only has one ear implanted. She looked at him and said, “Tell me what you think that would really do for me?” He smiled and said, “actually not much, you do so well. Leah, I think you should save your other ear for the future. There are some exciting medical advancements that you will see in your lifetime.” My two cents: Sign language should be the first choice for a deaf child, no matter what additional options you pursue. Reprinted with permission from www. rachelcoleman.com. Rachel Coleman is the mother of two exceptional children, Leah (15) is deaf, and Lucy (12) has cerebral palsy and spina bifida. Rachel’s desire to create a world where children can communicate regardless of their abilities (or disabilities) led her to co-create and host the DVD and public television series “Signing Time!” for which she received an Emmy nomination in 2008. 37
Continued from page 19 new signs in 10 years. Sheila Jacobs is working with the San Diego Deaf community to develop a fall interactive family event that will include a lecture series, an introduction to the new Double Pride Performance Group, and an interactive Double Pride Signing Café. She hopes to have a Deaf chef provide a cooking and signing demonstration, Deaf waiters, and Deaf special guests to eat with hearing families and their deaf and hearing children. She also presented a well-attended and very successful CAL-ED (California Educators for the Deaf) workshop for teachers, Strengthening Sibling Bonds at Home AND in the Classroom:
An Important Ingredient for Successful Bilingual Families AND Bilingual Education, last March. A video can be seen at www.youtube.com/ watch?v=2NB8xGiYIWM. Double Pride hopes to provide a Young Siblings Program at CAL-ED’s March 2013 Conference in Los Angeles. Double Pride also hopes to bring some of its programs to the ASDC conference in June 2013. For more information on Double Pride, visit www. doublepride.com or check Facebook under Double Pride. Watch the Deaf and Hearing Sibs Party 2012 video at www.youtube. com/watch?v=wCxj4Grlmh8.
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A Guide for Parents:
All Kinds of Families
By Jan Hare and Lizbeth A. Gray University of Wisconsin, Stout, and Oregon State University If your family doesn’t fit the historical definition, then you and your children may occasionally face some difficult situations. For example, you may wonder, “How do I explain our family structure to my children?” One purpose of this publication is to help you talk to your children about what really makes a group of people a family. You can help your children recognize that a family is better defined by what the people in them do for one another than by the way it is structured. Another purpose is to reassure you that many types of family exist in the United States, so you aren’t alone in your efforts to establish a happy, healthy family. Families Take Many Shapes Since the industrial age began, a family has been defined as a heterosexual couple and their offspring, sharing a common dwelling and dividing work by
gender. In this definition, the woman takes care of the children inside the home and the man works outside the home. Few of today’s American families fit this definition, however. In fact, according to the US Census Bureau, in 2006, only 15 percent of all American families resembled the so-called typical American family, that is, a married couple who are the biological parents of two children, where the father works outside the home and the mother is a homemaker. Families, like the people in them, are diverse! American children live in a variety of family forms: For example, while some children live with both parents, many live with only one parent; others live with one biological or adoptive parent and one stepparent. Some do not live with either parent; instead, they are cared for by other relatives or foster parents, or child care providers. The parents of some children are married and others are not. Some children live with parents of the same sex. It is important to mention that couples without children also constitute a family. 39
Letâ€™s take a look at some varieties of families in which children live. They vary as much as their individual homes. Family Forms Married Nuclear Families In these families, both adults are the biological or adoptive parents of the children. This group makes up about two-thirds of family households in the US. There are three types of married nuclear families. In the first, both husband and wife work outside the home. According to the census bureau, this is the case for about two-thirds of all married couples with children. In the second type of married, nuclear family, the husband works outside the home, while the wife works inside the home caring for children. In the third type of married nuclear family, the woman works outside the home and the man cares for the children. This constitutes only a small percentage of families, about four percent. Cohabiting Families In this kind of family, a man and woman live together but are not 40
married. If there are children, at least one of the adults is a biological or adoptive parent. Single-Parent Family In this family there is only one parent in the home. The number of single-parent families in the US has remained stable since 1995, and makes up about 25 percent of all households. The primary reason is divorce rates are at slightly more than 50% and births to women who do not wish to marry. Sixty percent of all children will spend some of their lives in a single-parent family. Currently, about 88% of these families are headed by women. Blended Families and Stepfamilies These families are generally created by divorce and remarriage. In blended families, biologically unrelated children may live in the same household. Grandparent-led Families Sometimes, children are reared by their grandparents when their biological parents have died or can no longer take care of them. Eight percent of US children live in households headed by their grandparents. In addition, many grandparents take the lead responsibility for child care, particularly when both parents work. Families in Which the Adult or Adults are Lesbian or Gay Children are sometimes reared by a lesbian or gay single parent or two gay or lesbian parents. Adults may bring children from a heterosexual relationship to these families; other children may have been adopted or conceived
by assisted reproductive technologies, such as intrauterine insemination or in vitro fertilization. Sometimes one parent is the genetic parent and the other parent adopts the child. Sometimes one is the gestational parent and the other is the genetic parent. Commuter Families In these families, the parents live and work in different towns or states. One parent provides the primary residence, and the other parent comes home for short periods of time, such as weekends and holidays. This occurs for different reasons. For example, it may be difficult to find two professional jobs in the same city, or one or both parents may have military obligations that require them to be gone from their families for periods of time Foster and Group Home Families Foster parents and institutional child care workers often provide a substitute family for children referred by the courts or government agencies. While problems with their parents or guardians are being resolved, the children may live in these families. As you can see, there are many different family structures. Because American society tends to promote the traditional family as the norm through literature, schools and television, children who live in other types of families may feel that theirs is not a real family and may be embarrassed by different family structures. It is important to let children know that the so-called “traditional family” is less common than most other types in the U.S. It is also important to help
children understand that what the family provides for its members is more important than the way it is structured. Challenges to Children Children who don’t live with their married, biological parents sometimes face social challenges. Although loyal to their family, they may sometimes feel self-conscious about being part of a family that is “different.” Here are examples of some of the challenges these children may face: A boy living with his mother and stepfather often sees his biological father, who lives in the same town and is very involved in his son’s upbringing. Sometimes he needs to explain to friends that his stepfather is not his “Dad.” A 15-year-old girl lives with her father. Her mother works 1,500 miles away and comes home four days a month and most holidays. The daughter sometimes has to explain to her friends that her parents are not divorced and that
her mother participates by telephone in nearly all family decisions. For example, she may have to tell a teacher, “I’ll have to call my mom before I can volunteer as a camp counselor.” The parents of a 12-year-old girl have joint custody. She often needs to explain her living circumstances, “I live here with my mother during the school year, and during the summer I live on the East Coast with my father.” Another boy in a joint custody family explains, “I live one week with my mom and the next with my dad. I’ll give you both of my phone numbers.” Eight-year-old twins live in a singleparent family and explain to the Girl Scout leader that they are bringing their mother to the fathers’ night banquet. A 10-year-old girl with two mothers (one who is her genetic mother and the other, who was pregnant with her) explains to her friend that she really does not have a dad and really does have two moms. A preschool boy, the adopted son of a gay man who lives with his partner of ten years, introduces his family as “Daddy Tom and Daddy Jim.” Children can be secure and welladjusted in all kinds of family structures. However, even in the best of circumstances, being from a “different” kind of family is sometimes difficult because of misunderstandings outside the family. As a parent in a nontraditional family, you can help your children 42
cope with these sometimes complicated situations by regularly encouraging open discussion. Here are some suggestions for creating an environment conducive to open communication: Define family for your children. One of the best definitions of family was given by a child who said that a family is “a group of people who love and take care of each other.” Help your children think about families in terms of what family members do for each other. Consider your own attitudes. Sometimes parents and others unknowingly convey a negative sense of the family to children. For example, a single mother may feel that until she is married again she and her children are not really a family. The mother’s attitude, created by her discomfort and feelings of insecurity, may create a sense of inferiority in her children. Single-parent families are sometimes viewed as broken families. It is important to emphasize that they may not be broken nor need fixing. Love and caring
for each other make a family strong and whole. When parents encourage strong bonds between family members, the children are more likely to feel secure. They are less likely to be concerned about their family being different. Talk to your children about the many different ways people can be a family. Children can better understand your meaning if you use examples of people they know. For instance, you might say: “Jenni’s parents don’t live together anymore. Jenni lives with her mother and her mother’s partner, Scott.” “Jason does not have a dad, but he has two moms who take care of him.” “Jessica’s mother and father are not able to take care of her right now. For the time being Jessica lives with Sally and Paul, her foster parents. Encourage your children to ask questions. In order for children to understand what might be a complicated family situation, they need to feel comfortable asking whatever questions may be on their minds. It is important to answer questions in a straightforward manner. For example, an 11-year-old child might ask her father, “Why did you have to divorce Mommy and marry Susan?” One response might be, “Your mother and I grew to be unhappy living together. Nothing about our troubles was your fault. I now love Susan very much and she is a part of our family. Now you have both your Mom and Susan in your life.” A second example may be that of a
four-year-old child conceived by assisted reproductive technologies asking, “Do I have a daddy?” One way of replying is to say, “You don’t have someone we call Daddy. You have a father, but he is not a part of our lives. You have two mommies who love you very much.” As the child grows older, it is important to explain more about alternative insemination and the reasons for choosing this method of conception. Recognize potential societal barriers. A complicated situation may develop when adults of the same sex join together. Gay men and lesbians often experience prejudice. As a result, children can be fearful about disclosing information about their family. It is helpful for parents to provide as much support as possible for the child and also to respect the way the child wishes to control personal information. Patience and understanding often go a long way toward creating acceptance. Many children who are allowed to control what their peers know about the family eventually gain the confidence to acknowledge the adults’ relationship and cope well with responses from others. Peers who sense the child’s own comfort often accept the family situation. Let your children control the information they want to give. If a new stepfather is about to join a singleparent family, allow your children to tell their friends about the marriage. A family discussion about the ways your children might explain this change to friends might be helpful. For example, it might be helpful to invite your chil43
dren to safely experience with you how it would be to say, “My Mom’s getting married again. I’m going to have a stepdad.”
Help your children creatively describe your family. Picture drawing Ask your children to draw a picture of the whole family. When they are finished drawing, simply ask them to tell you about it. This drawing may give you a good idea about each child’s view of the family. Notice the placement of figures. Who is next to whom? Is anyone left out? What are the emotions displayed by family members? You might want to collect a few drawings from your children at different times over the course of a few months. What a child draws on a happy day may be different from what the child draws on a sad day. Be sure to let them talk about the drawing. The best interpretation comes from the child who created the drawing. 44
Family maps Drawing a map of family relationships can help your child to understand connections among immediate and extended family members. It can be fun, too! Younger children live in a very literal world. They need simple explanations. Giving a simple description of what may be a very complicated family situation is not an easy task! Here are two families who have complicated histories. Each family functions very well as a group of people who love and care for each other. Their family maps provide clear visual explanations off complicated situations. Family #1 When her children, Joshua and Samuel, were one and three years old, Martha and her husband divorced. The boys and their mother lived together as a single-parent family for 12 years. When the boys were in their teens, Martha married Ben. The boys’ relationship with Ben was difficult in the beginning but improved over the years. Two years after their marriage, Ben and Martha had a son, Zach. The older boys’ biological father was an uninvolved family member. However, their paternal grandfather played an active role in their lives. Zach is now seven years old and very attached to his older brothers. He has begun asking why Joshua and Sam have a different grandfather than he does. Zach’s moth-
er draws him a family map that explains the different relationships. Family #2 David lived with his mother in New York. When he was five years old, his mother died of cancer. Because he had never known his father, he went to Oregon to live with his maternal grandmother, Kate. David’s 24 year-old Uncle John still lives with Grandmother Kate. He drives David to school every morning because Kate cannot drive anymore. Grandmother Kate is David’s primary parent and now has full custody of him. Uncle John helps as much as he can and has agreed to assume responsibility for David if Grandmother Kate dies before David is 18. Photo art Family portraits and family photo albums also may have special importance to children. Children can keep their own albums or create photo collages of the family. These photos can help them to understand the special connections among people and serve to validate their sense of family. Developing Community Support Equally important in providing children a sense of security is support from community groups. For example, most people know a family that has experienced divorce and remarriage. Other family structures, such as children who live with same-sex parents, are less common. In general, it is important to consider sharing information about the family structure with some community groups, especially the schools, churches, family physicians, and children’s
groups such as the Scouts. The school should know who the responsible adults are in the child’s life, especially in circumstances involving joint custody. The school should also have some idea of the living arrangements of the child. For example, understanding that the child has two moms can help school personnel respond appropriately to the child’s family. It is important to keep in mind that you are the judge of how you want to help teachers and other community professionals understand and interact with your children. Your values are the key to the decisions you make about your children. American families are our greatest resource. Families are better defined by what the people in them do for each other than by the way they are structured. They deserve to be preserved and nurtured in all their diversity. Reprinted from www1.cyfernet.org/ prog/fam/nontradfam.html.
A Family Fun Event Start planning now to attend ASDC’s Biennial Conference in Tucson, AZ! June 26-29, 2013 www.deafchildren.org 45
Love Makes a Family By Michael and Brian Berry-Berlinski Like many other families, we are alike in that we love each other, share fun times together, comfort each other in our moments of sadness, and so on. But when we go out to restaurants, go food shopping, play at the park, or spend some time browsing through our local library, it seems that we often get noticed. At these times, we imagine some folks may be seeing how different we are, setting us apart from other families. Michael is hearing and Brian is Deaf. We are the proud fathers of three beautiful Deaf children: Zenaida, Juan, and Mario. Zenaida is seven years old, Juan is six years old, and Mario is five years old. They are enrolled at California School for the Deaf in Fremont, which provides students with a language-rich environment for optimal learning. We communicate with our kids through ASL, their natural language. We met each other in September 2008 through one of the most unlikely connections, Michael’s mother Belanie. From the very beginning, we were clear we wanted to raise children, at least two kids. For a year, we talked about the possibility of adopting through a 46
private agency that handles open adoptions of newborns. It was important to us that our children have a healthy, empowering relationship with their birth parent or parents. We also wanted to have at least one Deaf child in our family. Setting out on our adoption journey, we gathered more information about our options. In November 2009, we attended an introductory seminar at a private adoption agency. We were impressed by the assurance that the agency would provide ASL interpreters for every meeting. By the end of the seminar, we had visions of coming home with a baby. In July 2010, we were married in a commitment ceremony in Maui. A few months later, we revisited our plan to adopt through the agency. Michael brought up another adoption option: the foster care system. At first, Brian resisted the idea, but eventually understood Michael’s point. Through this other option, we would be able to know whether there were Deaf children in need of a Forever Family. If we worked with the private adoption agency, chances were that we wouldn’t know if any of the expecting mothers would be giving birth to a Deaf baby.
That conversation took place on Octo- decided who would continue working ber 15, 2010. The very next day, a mira- (Michael), and who would stay home cle happened. Brian went out of town to take care of the kids (Brian). On top on a business trip with his coworkers. of his work schedule, Michael made a He shared with his supervisor, Julie, the commitment to take ASL classes. It was conversation he had regarding adopting a tremendous change for all of us! a Deaf child in foster care. ImmediOn June 15, 2012, we finalized our ately, Julie responded, “I just met three children’s adoption. It was one of the Deaf children last Saturday when I was happiest days of our lives. In retroshopping with my husband. They were spect, we feel incredibly blessed for with their foster parents, both of whom many reasons. We appreciate the fact are Deaf. I knew there was something that our kids had abundant love and special about these kids.” support from their foster parents. We Although Brian did not know the appreciate that our kids have amazing foster parents, he birth parents who …to love our children for love them very much. knew the foster mother’s sister, who who they are, for how they We also appreciate is also Deaf. With are, and to understand the support we were her help, we connect- and honor their choices in given by the kids’ ed with the foster teachers, their social how they see life, through family, and about a workers, and their month later, we visit- their own eyes. therapists so that ed their home and we could address our met Zenaida, Juan, and Mario for the children’s varying needs. first time. Our journey as a Forever Family It was a day we would never forget. has been, and will continue to be a Our experience in meeting the kids celebration of the differences among was that we fell in love with them, their ourselves, and how we are different unique qualities, their sense of humor, from other families. Moreover, we the way they teased us and laughed with celebrate with the awareness that, deep us. Through our own eyes, we saw they down, we are all the same – that we all were very special kids. Being with them came from love. With the guidance we moved our hearts with magnificent joy. have received from our close friends We so wanted to adopt them. and family throughout our journey of After some careful planning over the becoming parents, we have learned next three months, the kids moved into our role as a parent is simply this: to our home. In a short time, we made love our children for who they are, for major life adjustments: trading in our how they are, and to understand and SUV for a minivan, and moving from honor their choices in how they see life, a studio loft to a three-bedroom apart- through their own eyes. ment. After serious consideration, we 47
Parental Involvement: You Make a Difference!
By Lauren Truitt and Deborah S. Stryker, Ph.D. Parents play a pivotal role in a child’s education; they are their child’s first teacher. It is important that parents realize this key role in the academic success of their child. Knowing that almost 92% of children who are deaf or hard of hearing (DHH) are born to hearing parents (Mitchell & Karchmer, 2004), hearing parents may not have the necessary background knowledge about being deaf to effectively decide how to educate their child (King, 2010). Professionals from various fields can supply parents with background knowledge and information about being deaf which may assist or overwhelm them, thus possibly making educational decisions more difficult. Think back to your childhood. Did your parents: Attend school functions? Help you with your homework? Provide you with moral support? Encourage 48
educational play within the home? These are all areas in which parents can become involved in the life of their DHH child. For you as a parent, what activities come to mind when you envision your involvement in your DHH child’s schooling? Will you focus your attention on areas specifically related to school? Will you think about what you can do for your child in your home or out in the community? It is important for you to realize the importance of your role in your child’s education. The following list of activities has been researched to facilitate parental involvement in the success of DHH children’s education: • Having high expectations for your child. • Volunteering in the school and if possible in your child’s classroom. • Attending school activities or events on a regular basis. • Helping with homework and emphasizing good study habits and grades. • Communicating with your child at mealtime, on a walk, watching TV and discussing interests with your child. • Communicating with school personnel on a regular basis, using a home/school notebook.
Participating actively in your child’s Individualized Education Plan (IEP). • Attending school meetings, teacher-parent conferences and asking questions. • Reading to your child; create a special place and time for this activity. • Taking sign language classes and having sign dictionaries available in the kitchen and car. Parents need to be proactive in getting involved in their child’s education, and equally, teachers need to be proactive in encouraging and welcoming parents to become involved. Stressors that affect parental involvement will constantly change and will vary by family. Therefore, it is important that parents know any amount of positive involvement will benefit their child. Often in a struggling economy, both parents need to work or a single parent works multiple jobs to ease the financial burdens. This takes away from the parents’ ability to be involved in their child’s life. Remember to reserve a time during the day when you and your child are home, can sit down together, and spend quality time together. Advocating for your child is important. Get involved in any way possible to learn more about your child and his or her academics. Professionals have equal responsibility to help parents become more involved in their DHH child’s education. Communication between professionals and parents is often challenging and becomes harder when the two do not share the same language,
whether it is English, American Sign Language (ASL), Spanish, or another language. Providing interpreters for parent-teacher communication, sending school notifications home in the parents’ native language, or creating cultural days where parents can come in and share their culture/language with students could have a tremendous impact on parental involvement. If professionals want to increase parental involvement, they need to be willing to help in any way possible to encourage it. Hopefully, professionals will reach out to parents, but if not, parents should not hesitant to initiate contact. Parents should make it known to professionals that they want to be involved. All of these aspects of involvement can seem quite overwhelming, so take a deep breath and think about taking one step at a time. Think about how you can become even more involved in your child’s academic success. Consider attending more school functions, converse with your child at the dinner table every night, or devise your own way of being an active member in your child’s life and academics. Lauren M. Truitt is completing her master’s degree in education of the deaf and hard of hearing at Bloomsburg University of Pennsylvania. Deborah S. Stryker is an associate professor in the graduate teacher preparation education of the deaf program at Bloomsburg University of Pennsylvania. For the full reference list, please contact the authors at lmt10471@huskies. bloomu.edu. 49
Love Being Deaf By Chad Taylor Being Deaf At 36, I am a programmer who is Deaf, cannot speak a whit and use American Sign Language (ASL)— and I love it. I am married to a lovely Deaf wife and have a Deaf five-year-old son who brings me nothing but joy. If I attempted speech, zookeepers would storm out, thinking a chimp just broke out of its cage. Suffice it to say, I never speak and never wear assistive hearing devices. Life is good. Deaf Culture Deaf culture has been the best thing for me. It allows me to be completely myself. I can speak in my native language, which I think is one of the most expressive, beautiful languages. I do not engage in Deaf culture because I’m lonely and it’s the last resort. Human beings are social creatures, and we thrive by associating with others. People with healthy identities are able to engage in social settings and their communities with ease. The Deaf community provides that for me by affirming my being and identity. I also engage in it because it allows me to be with people who are Deaf and communicate using the same language. Just like any other culture, the Deaf culture exists because people share common beliefs and goals, simple as that. I’m not angry at the hearing world. I love my family members, who are hear50
ing. They made the best decision when they sent me to a Deaf school, where I was educated using sign language. My family learned sign to communicate with me, and they are now able to communicate with my wife and son. If one views being not able to hear as a significant disadvantage, it is because he or she chooses that perception. I have always thought being Deaf is beautiful just like hearing people think that music is beautiful. Being Deaf in the World of Work I’ve been involved with several successful start-ups as a programmer, and am currently employed with the San Francisco-based company ThoughtMatrix, where I’ve had the opportunity to work with a Deaf co-worker and plenty of sign-impaired (i.e., hearing) co-workers. We all communicate via instant messaging software. Even the signimpaired co-workers use this mode of communication with each other, so the playing field is level for all. When we
resort to phone conversations, we use video relay services easily. As for staff meetings and happy hours, ThoughtMatrix hires an ASL interpreter to allow us to participate on equal footing. I realize most companies are not willing to set aside finances for accessibility, so I do feel fortunate to be employed by a company sensitive to accessibility needs. I’ve landed one job after another. I’ve never been unemployed in between. I tell people this: “It’s not what you know. It’s who you know.” This is the very reason why I never have any problem finding jobs. I can understand that it may be difficult if I wanted to divert from my established “network” and apply for a job at Google, but that is true for any person. My networks were built mostly through college (fraternity, theatre, student organizations) and meeting people throughout my career. I would never compromise myself by accepting a job or being interviewed by a company not sensitive to equality for all (hint: accessibility). At least, it makes my filtering process a lot easier. Solitude and Group Discussions I never viewed deafness as not under-
standing anyone; “deafness” is a clinical concept’; it implies absence, a lack of something, therefore I am inferior. Its logic is so devastating, it is almost too easy to fall for it, as many people have. If the world is examined closely enough, we will find it is not true. There are a thousand and one possibilities and ways of being. I am culturally Deaf, wherein I gain my identity and a unique window to the world. I would be lying to you if I said I never miss anything. However, I never took it as a negative thing. We often resort to gesturing which has potential to bring humor to the table. When I’m not in the mood for small talk, I catch up with the break-neck speed of technology news using Zite on my iPad. I will never consider getting a cochlear implant. I used to wear hearing aids, but the sounds made the world spin, and I hated the disturbances. I feel fine the way I am, and, besides, I do not have to “hear” to be successful. If I am the last to hear about things, then that tells a lot about the respect my employer and co-workers have for me as an individual. I would never want to work for an employer who basically leaves me out hanging in the corner and in my own world. 51
Love At the risk of sounding cliche, love is love. It has absolutely nothing to do with being Deaf. I know many Deaf people who have been married, both to Deaf and hearing people, and it does not appear to make any difference. My wife, Tara, and I have our ups and downs just like any other married couples. I love her not because she is Deaf but because of her personality and well-being, her outlook on life, and how great of a mother she is to our son. My five-year-old son, Pax, is also Deaf. Tara and I do not argue on “how to raise him right based on his hearing loss.” Tara and I raise him based on the basic principles of equality, respect, and self-esteem. We hope for him to turn into a curious, questioning, and engaged citizen of the world. We hope to raise him with a healthy identity in order to challenge all systems of discrimination and oppression. Being a parent, I’m biased, but Pax is definitely a fine young boy who is teaching me so many things about life. I’m the proudest parent you could find. Tara and I are expecting another child. We are thrilled and will raise him/her with the same principles whether s/he is deaf or hearing. Accessible Services I have no problems in this area. When I need interpreters, they’re always 52
available. When I need to engage in phone conversations, there are video relay services that give me zero barriers. Of course, access can always be improved. The same is true for anything else in life. We have to constantly challenge ourselves and others to create better solutions. Final Words How you live your life, regardless whether you identify as Deaf or not, is about the choices you make. I cannot stress the importance of positive thinking as it enables you to do amazing things. People have told me I’ve done amazing things but I never feel satisfied—I always want to do more, just like an artist who is never satisfied with his corpus of work. I like this quote by Henry Ford: “Whether you think you can or can’t, you’re right.” Never will I wish anything to be different. If I did, I would never have met Tara and be a father to an amazing son, Pax.
A Family Story about Wei By Deb Skjeveland I have two brothers and always wanted a sister. When I was 12, I approached my parents asking them to have one more child, hopefully a sister for me. They said no; they were happy and satisfied with three kids. I kept begging with no luck. I asked my parents to consider adopting, and they smiled but said no. Years later while a student at Gallaudet University, I met a wonderful man from Minnesota. John was a sophomore and I was a freshman from New York; when we met, I just knew he would be my husband. After we graduated from Gallaudet, we got engaged and married nine months later. From time to time throughout our relationship, I mentioned to John that my dream was to adopt a girl from China. We had Joshua, Brittany, and then another daughter, Courtney. All of them were born deaf, the fifth generation on my side. We were living in Sioux Falls, when one evening, I sat down with John and told him I was ready to explore adoption. John looked at me and asked if I was serious. I told him my desire to adopt had never gone away. I started to browse the Internet. I was surprised to learn there were so many deaf and hard of hearing kids in the world who needed families. I began to receive pictures of adorable deaf and hard of hearing kids from different adoption agencies and printed them to
show to John. He would smile but did not show any desire. I didn’t give up, though. I kept printing pictures, but his reaction didn’t change. I decided to get our kids involved. Sure enough, in a short time, Joshua, Brittany and Courtney were on my team and it was now four of us versus John. Two years later, I printed a picture of a handsome four-year-old boy from China. Given that I already had two daughters, I thought an addition of a son would be perfect. I gave the picture to John and walked away. I noticed John did a double take with that picture. Later in the evening, John took another look. Maybe this child hit a soft spot in John’s heart, I hoped. The next morning, John said, “Let’s get more information on Wei Liang.” I wasted no time and contacted the Spence Chapin adoption agency. We agreed Wei belonged with our family, and the kids were ecstatic. It took us nine months to complete the home study, paperwork, and all 53
the details. It felt like a pre g nanc y of paperwork. I was working at Camp Lakodia as a program specialist when I received an e-mail telling me it was time to go and pick up our son. I will never forget that moment. My co-worker, Jody, was next to me and we hugged. I sent John a text and told him that we had to fly out in two weeks. The next two weeks were a blur getting everything together. John and I agreed it would be best for us to first bond with Wei before bringing him home to our other kids. We also asked our friends to help donate baby items for the orphanage such as bottles, toys, etc. It was an emotional time because we knew we had to leave our kids for two weeks but we also knew Wei needed us more than ever. He was four by now and would be five when we arrived. John and I had two days in China to recover from jet lag before going to the courthouse in Hefei. We were both nervous and excited as we waited. At last the door opened and there was Wei. He was smiling and had the photo album we mailed him in his hands. The photo album was filled with pictures 54
of us, our home, and our pets to help prepare for his new family. Although John and I wanted to hug Wei because we had waited so long for him, we had been advised to go slow and gentle, as it was an overwhelming time for Wei. He first sat on Johnâ€™s lap then sat next to me, and we played with toys. John and I kept staring at him. We couldnâ€™t believe we had our son at last. Wei had no language aside from five signs in Chinese. We started off with gestures, and then we showed Wei signs for different things. Throughout our two-week stay in China, we continued signing, and Wei caught on fast. It was a beautiful experience, and we spent time learning all about each other. We also had to work with his behavior. After all, this was a new world for Wei. He had been the only deaf child in the orphanage and had spent much of his time with babies. Now Wei had parents, access to the world outside of the orphanage, to different food, to toys, and most of all, to a language and communication. When we got home, we worked hard on language and communication. Our kids were awesome. They took turns
Websites of Interest The Learning Community “Tips for Parents: Diverse Families www.thelearningcommunity.us/ resources-by-format/tips-forparents/diverse-families.aspx California School for the Deaf Interested in viewing story signing strategies for children? www.youtube.com/watch?v=drMbd flqL5E&feature=plcp. Odyssey Magazine: Laurent Clerc National Deaf Education Center The Odyssey is packed with articles to help support you in raising and educating your Deaf or Hard of Hearing Child. www.gallaudet.edu/clerc_center/ information_and_resources/ products_and_publications/ odyssey.html
Off to College with Autism | Navigating College Website Navigating College, a project of The Autistic Self-Advocacy Network (ASAN), is an introduction to the college experience by and for people with autism. The writers and contributors are autistic adults, giving the advice they wish they had been given when starting college. www.navigatingcollege.org DeafNation Expo 2012 www.deafnation.com DeafNation Expo is the foremost touring trade show for, by, and about deaf people. DeafNation provides exhibitions and entertainment around the United States at no charge to the public. • Oct. 13: Pleasanton, CA • Oct. 20: Seattle, WA • Nov. 3: Chicago, IL
working with Wei and within weeks, Wei was fluent in American Sign Language. He was also becoming more fluent in written English. With this language access came greatly improved behavior. It has been an amazing process for our family to witness how language development helped Wei blossom into a happy and content boy. We recently celebrated his “Gotcha Day” (the day Wei joined our family). He has been a part of our family for six years, and I am itching to adopt again. John always rolls his eyes when I say, “Just one more.” He knows that one wouldn’t be enough for me. Although John feels our family is complete, my children and I won’t give up. I would love to have a brother from China for Wei. Let’s see what happens… 55
ASDCâ€™s Renewing Educational and Organizational Members Alabama Institute for Deaf and Blind 205 East South Street Talladega, AL 35160 256-761-3215 www.aidb.org
American School f/t Deaf 139 North Main Street W. Hartford, CT 06107 860-570-2300 www.asd-1817.org Arizona School f/t Deaf and the Blind P.O. Box 88510 Tucson, AZ 85754 520-770-3468 www.asdb.az.us Arkansas School f/t Deaf 2400 W. Markham St. Little Rock, AR 72205 501-324-9543 www.arschoolforthedeaf. org Beverly School f/t Deaf 6 Echo Ave. Beverly, MA 01915 978-927-7070 www. beverlyschoolforthedeaf. org California School f/t Deaf 39350 Gallaudet Drive Fremont, CA 94538 510-794-3685 www.csdeagles.com 56
Cleary School f/t Deaf 301 Smithtown Blvd Nesconset, NY 11767 531-588-0530 www.clearyschool.org
Indiana School f/t Deaf 1200 East 42nd Street Indianapolis, IN 46205 317-550-4800 www.deafhoosiers.org
Colorado School f/t Deaf and Blind 33 N. Institute Street Colorado Springs, CO 80903 719-578-2100 www.csdb.org
Iowa School f/t Deaf 3501 Harry Langdon Blvd. Council Bluffs, IA 51503 712-366-0571 www. iowaschoolforthedeaf.org
Delaware School f/t Deaf 620 E. Chestnut Hill Rd. Newark, DE 19713 302-545-2301 www.christina.k12.de.us
Kansas School f/t Deaf 450 E. Park Street Olathe, KS 66061 913-791-0573 www.ksdeaf.org
Educational Service Unit #9 1117 S. East Street Hastings, NE 68901 402-463-5611 www.esu9.org
Kendall Demonstration Elementary School 800 Florida Avenue NE Washington, DC 20002 202-651-5206 www.gallaudet.edu/ clerc_center
Florida School f/t Deaf & Blind 207 N. San Marco Ave. St. Augustine, FL 32084 800-344-3732 www.fsdb.k12.fl.us Gallaudet University 800 Florida Avenue NE Washington, DC 20002 202-651-5000 www.gallaudet.edu
Lamar University P.O. Box 10076 Beaumont, TX 77710 409-880-7011 www.lamar.edu Laurent Clerc National Deaf Education Center 800 Florida Avenue NE Washington, DC 20002 202-541-5855 www.gallaudet.edu/ clerc-center
Maryland School f/t Deaf PO Box 250 Frederick, MD 21705 301-360-2000 www.msd.edu
Missouri School f/t Deaf 505 East 5th Street Fulton, MO 65251 573-592-4000 www.msd.k12.mo.us
Michigan School f/t Deaf 1667 Miller Road Flint, MI 48503 810-257-1400 www.deaftartars.com
Model Secondary School f/t Deaf 800 Florida Avenue NE Washington, DC 20002 202-651-5031 www.gallaudet.edu/ clerc_center
Mill Neck Manor School f/t Deaf P.O. Box 12 Mill Neck, NY 11765 800-264-0662 www.millneck.org Minnesota State Academy f/t Deaf 615 Olof Hanson Drive Faribault, MN 55021 800-657-3996 www.msad.state.mn.us
Montana School f/t Deaf and Blind 3911 Central Avenue Great Falls, MT 59405 406-771-6000 www.msdb.mt.gov National Center on Deafness California State University/Northridge
18111 Nordhoff Street Northridge, CA 91330 818-677-2145 www.csun.edu/ncod/ National Technical Institute f/t Deaf 52 Lomb Memorial Drive Rochester, NY 14623 585-475-6426 www.ntid.rit.edu New Jersey School f/t Deaf Box 535 Trenton, NJ 08625 609-530-3100 www.mksd.org New Mexico School f/t Deaf 1060 Cerrillos Road Santa Fe, NM 87505 505-827-6700 www.nmsd.k12.nm.us
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. 57
Ohio School f/t Deaf 500 Morse Rd. Columbus, OH 43214 614-728-1422 www. ohioschoolforthedeaf.org Oklahoma School f/t Deaf 1100 E. Oklahoma Ave. Sulphur, OK 73086 580-622-8812 www.osd.k12.ok.us
Rochester, NY 14621 585-544-1240 www.rsdeaf.org Scranton School for Deaf and Hard of Hearing Children 537 Venard Rd. Clarks Summit, PA 18411 866-400-9080 www.thescrantonschool. org
Pennsylvania School f/t Deaf 100 W. School House Ln. Philadelphia, PA 19144 215-951-4700 www.psd.org
St. Joseph’s School f/t Deaf 1000 Hutchinson River Pkwy. Bronx, NY 14065 718-828-9000 www.sjsdny.org
Phoenix Day School f/t Deaf 7654 N. 19th Ave. Phoenix, AZ 85021 602-771-5300 www.asdb.az.gov
St. Rita’s School f/t Deaf 1720 Glendale Mildord Rd. Cincinnati, OH 45215 513-771-7600 www.srsdeaf.org
Pressley Ridge School f/t Deaf 8236 Ohio River Blvd. Pittsburgh, PA 15202 412-761-1929 www.pressleyridge.com
Texas School f/t Deaf 1102 S. Congress Ave. Austin, TX 78704 512-462-5353 www.tsd.state.tx.us
Rhode Island School f/t Deaf One Corliss Park Providence, RI 02908 401-222-3525 www.rideaf.net Rochester School f/t Deaf 1545 St. Paul Street 58
The Learning Center f/t Deaf 848 Central St. Framingham, MA 01701 508-879-5110 www.tlcdeaf.org Utah School f/t Deaf and the Blind 742 Harrison Blvd. Ogden, UT 84404
801-431-5100 www.usdb.org Vermont Center f/t Deaf and Hard of Hearing 209 Austine Dr. Brattleboro, VT 0301 802-258-9500 www.vcdhh.org Washington School f/t Deaf 611 Grand Blvd. Vancouver, WA 98661 360-696-6525 www.wsd.wa.gov Western Pennsylvania School f/t Deaf 300 East Swissvale Ave. Pittsburgh, PA 15218 800-624-3323 www.wpsd.org Willie Ross School f/t Deaf 32 Norway St. Longmeadow, MA 01106 413-567-0374 www.willierossschool. org Wisconsin School f/t Deaf 309 W. Walworth Ave. Delavan, WI 53115 262-740-2066 www.dpi.wi.gov/wsd
Competitions for Deaf and Hard-of-Hearing Students Win cash and prizes valued at up to $650!
Students in 6th – 12th grade can compete individually or with a team. The fair takes place at RIT March 22 – 24, 2013 Deadline to enter: December 15, 2012 For details, visit: www.rit.edu/NTID/ScienceFairAB
Writers in 10th and 11th grade can enter their best work. Awards ceremony takes place at RIT in the summer. Deadline to enter: March 15, 2013 For details, visit: www.rit.edu/NTID/WritingContestAB Questions? Call 585-475-7695 (voice/TTY) 585-286-4555 (videophone)
Enter today! Rochester Institute of Technology • National Technical Institute for the Deaf • Rochester, New York
firstname.lastname@example.org Parent Information and Referral Line: (800) 942-ASDC (2732)
MEMBERSHIP FORM Name:__________________________
Address: __________________________________________________________ City: ___________________________
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
Get blown away with Unlimited conversations using the Sprint® Mobile IP app on your Sprint Android™ powered device
Sprint Mobile IP app is available for Deaf, Hard-of-Hearing, and people with speech-disabilities to place internet relay calls, connect with a qualified relay operator, and communicate using text on our devices. n
Tap, connect and chat wirelessly
Save or send text conversations
Receive incoming calls
Scan the Sprint Mobile IP app with a QR Code reader.
Sprint IP Relay Service is a free service offered to Deaf, Hard of Hearing and Speech disabled individuals that allow them to place relay calls over the Internet between locations in the United States (including its territories). International calls will either be blocked or terminated. Available only in USA and US territories. Due to FCC regulations that Deaf, Hard of Hearing and people with speech disabilities can only use this service. Registration required using this service – register to get your 10 Digit Number from www.mysprintrelay. com. Although Sprint IP Relay can be used for emergency calling, such emergency calling may not function the same as traditional 911/E911 services. By using Sprint IP Relay for emergency calling, you agree that Sprint is not responsible for any damages resulting from errors, defects, malfunctions, interruptions or failures in accessing or attempting to access emergency services through Sprint IP Relay; whether caused by the negligence of Sprint or otherwise. Other restrictions apply. For details, see www.sprintrelay.com. © 2012 Sprint. Sprint and its logos are trademarks of Sprint. Android is a trademark of Google, Inc. #122004
ASDC #2047 800 Florida Ave., NE Washington, D.C. 20002
Non-Profit Org. U.S. Postage PAID Washington, D.C. Permit No. 863243
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 high-quality programs and services. Consider joining ASDC today, and receive The Endeavor three times 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
The magazine for the American Society for Deaf Children