Volume 17 Issue 1
In This Issue
Interveners: One Key to Success
Sally and Mike Prouty
Our son Andy was born 28 years ago with CHARGE Syndrome. At that time we were living in the mountains of Washington State and planning a career move with the U.S. Forest Service to Alaska. Having an infant diagnosed with deafblindness changed everything. A career in the western forests suddenly looked a bit tenuous. We needed a new plan.
After the tears dried, resolve set in. We had heard the story of Helen Keller and Anne Sullivan and knew that Helen Keller was successful largely because Anne Sullivan brought the world and communication to her. We wanted to do the same for Andy, but there werent enough hours in the day for us to expose him to all of the concepts his older brother learned so easily. We wanted Andy to be as independent as possible, and we knew the early years were vital for educating our son. We were determined to find Andys own Anne. At that time we had not heard the term intervener, but as it turned out, a key to Andys success was the presence of interveners early on. Here is our story.
An Approach Comes into Focus
Our understanding of interveners became a bit sharper after we read the book Deaf-Blind Infants and Children: A Developmental Guide (1982), by John and Jacque McInnes of the W. Ross MacDonald School near Toronto, Canada. The McInneses were early advocates for an education and support model based on intervenors (the Canadian spelling for the term), and they stated unequivocally that intervenors dramatically improve the lives of children with deafblindness. We corresponded regularly with John and Jacque and met them two years later when, at our suggestion, they attended a deafblind family weekend event in Oregon where we had moved when Andy was one and a half. We had moved from the forests of central Washington to southern Oregon because our research revealed that there was an excellent preschool there with a teacher trained in deafblindness.
We realized that Andy lived in a bubble. He could only access information as far as he could hear and see. Because he is profoundly deaf and has vision in only one eye, his bubble is quite small. We didnt want Andy to grow up isolated from people and the world. We wanted him to be independent. If he was to be independent, then he needed to learn, and if he was to learn, he needed access to information and communication. It was overwhelming for us to provide all that Andy needed on our own. The only way as with the help of a trained person who could compensate for his hearing and vision losses. An INTERVENER!
When Necessary, Grow Your Own
Our conversations with the McInneses, as well as our own reading and observations, reinforced our belief that Andy would benefit from an intervener. At that time, there were no formal intervener training programs available, so we adopted a grow your own approach. We discovered two college students home for the summer who knew sign language and we trained them as best we could. We received a small grant from the Lady Lions Club in our community to pay these interveners to fill in the many hours of the day when we were unable to teach Andy ourselves. These young women, who were short on training but long on commitment and energy, worked on sign language vocabulary and concept development and supported the goals on Andys individualized education program (IEP).
Working closely with the school district, we were also able to obtain the service of an intervener at Andys preschool. She was an amazing woman who developed a trusting relationship with Andy, and this led to his making great strides in language, concept development, and independent mobility. This was a good start, but we were driven to provide more for our son. While he was still in preschool, we were thinking 20 years ahead. We realized that anything we did to help him academically as a young child would pay huge dividends in helping him to achieve independence later in life.
A New Chapter
We kept in touch with the McInneses, who told us about a grant-funded project at the SKI-HI Institute at Utah State University to hire community interveners for children with deafblindness. So when Andy was 3 years old we moved to Ogden, Utah, but we stayed there for only 3 years. In an effort to balance Andys needs, a career in the Forest Service, and our familys quality of life, we made the decision to move again in 1987. Our search took us briefly to Washington D.C., and then finally to St. Paul, Minnesota, where we still live today.
When we came to Minnesota 21 years ago, we were intrigued by a nonprofit agency now called DeafBlind Services Minnesota (DBSM). At that time, DBSM provided supports only to adults with deafblindness. We asked if they would consider serving children and suggested they contact the McInneses in Canada. As a result, DBSM requested funding from the Minnesota Department of Human Services, Deaf/Hard of Hearing and DeafBlind Services Division and received a grant to fund community interveners for children.
Thanks to this grant, Andy benefited from interveners until he was 21. These community interveners supported his IEP goals but did it in our home and community. Andy spent hundreds of hours over the years with his interveners practicing shopping, handling money, cooking, learning the layouts of stores and museums, participating in a group for teens with deafblindness, communicating with the public, and having fun in the process. Several of his interveners were members of the deaf community, so his use of American Sign Language also blossomed in the process. Because the role of interveners was not recognized in educational settings at that time, we requested the term interpreter/intervener when his IEP was written.
Andy was the first child in Minnesota to have an intervener, but currently at least 30 Minnesota children have interveners at home and/or in school. In 2003, the Minnesota Statewide DeafBlind Specialist at the Minnesota Department of Education established intervener training with a grant from that agency. Training consists of 72 hours of training over six weekends. Both community and school interveners receive training through this program. To date, over 100 community and school interveners have been trained in Minnesota. [Editor's note: This is a correction to an earlier version of this issue of Deaf-Blind Perspectives which stated that 30 community and school interveners have been trained in Minnesota
A Developing Field
Our family hasnt been alone in recognizing a need for interveners for children who are deafblind. The use of interveners has been a developing practice over the past 20 years throughout the United States. We and many other parents and professionals are convinced that school and community interveners create an excellent foundation for learning by providing:
Over the years we have heard many arguments from teachers and administrators why the use of interveners for children who are deafblind is not a good approach. Here are some of those arguments and our replies.
If your son gets an intervener, all parents of special needs students will want interveners. Their children could benefit from one-on-one learning too! This is true, but Andy is deaf and blind and does not have the same access to information and communication as hearing-sighted peers. An intervener provides access to things and people he cannot hear or see. Children who are deafblind need a way to access information, communication, and the world. Interveners provide this.
Your son will become too dependent on an intervener. If interveners are trained properly, children should become more independent. Initially, Andy did become dependent on new interveners as part of the process of developing trust and building a positive relationship, but once he felt secure and comfortable, he became increasingly independent.
An intervener will isolate your son from others. Just the opposite is true. Over the years, Andys interveners provided information to him that enabled him to better interact with others in and out of the classroom. Interveners must know when to step back to encourage independence and communication among peers. In the 1995 Teaching Research video series, You and Me, in which the intervener is called an interpreter-tutor, this person is described as an Ambassador for Friendships. We love that description! An intervener is a bridge to others, not a barrier.
An intervener does not have the proper licensure to teach your child. That is true, but the intervener works under the direction of licensed teaching staff. Frequent planning meetings with the education team keep everyone abreast of current goals, and the intervener is the team member who can provide much needed consistency for the child.
Recently when Andy was asked how interveners helped him, he said, My intervener helped me, for example, in school when the teacher would write on the blackboard. My intervener/interpreter would write or show me what was written on the blackboard. My intervener would also interpret what other kids said (signed). Well, if the kids were close, that was fine, but I couldnt see them farther away and she would interpret that for me. If I didnt have an intervener in my school, my teacher wouldnt be able to pay attention to the other students. The teacher would have to be close to me and sign and couldnt focus on the other students.
Andy continued, I think an intervener helped me when I was growing up because I am more independent now. I live in my own apartment, I pay my own bills, I do my own shopping, and I travel independently to work. I think it is important for deafblind children to have interveners for a variety of reasonsso they have access to the world and communication, fewer behavior problems, and independence. I think its important to pay for that. We agree. It is a small investment in a long future.
Conclusion Looking back over the past three decades, we see how important the influence of interveners on Andy and ourselves has been. We met amazing individuals who were committed, talented, and loving. We experienced life turns that we never anticipated, which opened up a new and exciting, albeit unorthodox, world to us. We were all united in our desire to make the best possible world for Andy. Our dream was realized when Andy moved into an apartment a few years ago. We see him frequently, but on his own terms. He is independent.
McInnes, J. M., & Treffry, J. A. (1982). Deaf-blind infants and children: A developmental guide. Toronto: University of Toronto Press.
Teaching Research. (1995). You and meinterpreter-tutor. [Video]. Monmouth, OR: Teaching Research Division, Western Oregon University.
Sally Prouty is the project coordinator and family specialist at the Minnesota DeafBlind Project.
Transition Time at NCDB
John Killoran Director,
On July 11, 2009, after 11 years at the helm, Kat Stremel Thomas stepped down from the directorship of the National Consortium on Deaf-Blindness (NCDB). During Kats tenure as director of NCDB, and of its predecessor NTAC (National Technical Assistance Consortium on Children and Young Adults Who Are Deaf-Blind), she guided the project with a never-ending blend of passion and energy, while maintaining her, and the projects, focus on increasing the quality of services and supports for children with deaf-blindness and their families. As a result, not only did she affect the lives of the children and service providers with whom she worked, but also of each of us who worked so closely with her.
Among the many exciting things recently occurring in her life, Kat has received funding from the U.S. Department of Education for a proposal through which she continues her research and passion for working with young children who are deaf-blind who have received cochlear implants. We look forward to the results of her new research and the contributions it will make to what we all do. Although no longer serving as its director, Kat will remain involved with NCDB and will assist with a variety of technical assistance and leadership activities.
I am also pleased to announce that Jay Gense is now serving as the director of NCDB. Jay has nearly thirty years of experience in the field of deaf-blindness as a teacher, consultant, and project director, as well as extensive experience in state and regional agency administration. Having had previous experience as a state deaf-blind project director, he is familiar with the workings and activities of the federal technical assistance and dissemination network and with the role of NCDB. Jay has not only hit the ground running, but he brings new ideas, additional insight, and expertise to the project.
Please join me in congratulating both Kat and Jay as they embark on their new adventures!
As the new director of the National Consortium on Deaf-Blindness (NCDB), I am pleased to take this opportunity to introduce myself and express my heartfelt enthusiasm for the work ahead. Most readers of Deaf-Blind Perspectives know that NCDB is a national project funded by the U.S. Department of Education, specifically by the federal Office of Special Education Programs (OSEP). NCDB works collaboratively with families, state deaf-blind projects, and federal, state, and local agencies to provide technical assistance, information, and personnel training. NCDB brings together the resources of three agencies with long histories of expertise in the field of deaf-blindness, the Teaching Research Institute (TRI) at Western Oregon University, the Helen Keller National Center (HKNC), and the Hilton/Perkins Program at the Perkins School for the Blind.
Im very proud of and cherish my roots in working and teaching in the field of deaf-blindness. Upon reflection, I find it amazing that these roots now extend back over 30 years. The adage time flies when youre having fun certainly holds true! Although Ive spent the last 12 plus years working as an administrator at the Oregon Department of Education, serving as director of low incidence programs and director of special schools, I still consider myself first and foremost to be a teacher.
I began my journey in the field working in a deaf-blind program and classroom during the summer of 1977. This classroom was literally tucked away in a very large institutional environment, serving 13 students who were deaf-blind ranging from 3 years old to 22. After a single day of working in this program I recall being hooked, completely intrigued, and mesmerized by the complexities of deaf-blindness and driven by a newfound curiosity and subsequent passion for trying to understand its uniqueness. This experience served as the foundation for my journey in seeking a better understanding of the impact of deaf-blindness on learning and development. My professional goal, from that point forward, was to understand how to teach in a way that allowed children who are deaf-blind to process, manage, and use information individually, based on each childs abilities to use sensory information. Ive been seeking to enhance that understanding ever since.
My professional journey has allowed multiple opportunities to teach in numerous states in a variety of programs. I've taught in classrooms in residential and other specialized schools, in specialized classrooms, in local school-district classrooms, and I've served as an itinerant consultant in a variety of urban and rural settings.
Since moving into educational administration, I've continued to serve programs in these varied environments. While at the Oregon Department of Education, I also served as director of the Oregon Deafblind Project. This experience, as well as direct and indirect work with scores of other state deaf-blind projects, has left me with great respect and admiration for the work of the state projects and of the many partnerships each has established.
So, why did I accept the appointment as director of NCDB? First, I believe that the current state of our field of deaf-blindness and our renewed national focus on the provision of quality education programs for all students provide a unique set of opportunities to serve children and families well. Second, I have great admiration and respect for the state deaf-blind projects, and I treasure the opportunity to partner with them through NCDB. Third, I believe that OSEP has established a quality infrastructure for national supports and services through their Technical Assistance and Dissemination (TA&D) network. I look forward to working within this network, through the collective talents and wisdom of NCDB staff, with the state deaf-blind projects and with partner agencies throughout the country to improve the infrastructures for delivery of quality services to some of the most complex children in our schools today. Finally, and most importantly, I have great respect and appreciation for the infants, children, and youth who are deaf-blind and for their families. It is an honor to accept a position in which I will have the opportunity to work on their behalf. I'm committed to bringing my past experiences and perspectives to the table and excited about being open to new experiences and perspectives, as we work together to improve and enhance quality programs.
I appreciate this opportunity to join NCDB and its many collaborative partners as we move forward in these opportune times. In future Deaf-Blind Perspectives issues, I plan to share some personal thoughts about services and systems, and perhaps to challenge present perspectives. I will always welcome input and feedback about NCDB services and supports, comments of praise and constructive criticisms, and specific ideas and suggestions for improvement. It is clear that the field of deaf-blindness benefits from carefully planned systemic collaborations and partnerships. The needs of the children and families we serve are far too complex to assume that any single approach to service and support will suffice. However, it's also clear that working together, our collective passions for quality will help us all to meet our ultimate goal of quality services for children.
An Experience of a Lifetime
For one week in June 2009, six other young adults with deafblindness and I participated in an advocacy training program called Deaf-Blind Youth in Action. The one-week course was held at Gallaudet University, a university for the deaf in Washington D.C. Instructors Amy Parker from Texas Tech University and Suzanne Ressa from the Helen Keller National Center had shared a dream to one day gather a group of young adults to learn to advocate and speak not only for themselves, but for deafblind individuals who may not have the ability to do so. We learned how to present information to senators, congressional representatives, and their staffs. While the program was intense at times, we all enjoyed our stay at Gallaudet and the work we did there. Interpreters, aides, staff members, and volunteers helped coordinate the activities so that we could all learn together. This was the first time many of us met other deafblind people our age, and then to top it off, we met President Obama and brought awareness of deafblindness to the White House and to states all around the country. We have a plan of action that we are continuing to work on today.
As a part of our wonderful journey to Washington , D.C. , we had the opportunity to meet many important decision-making persons from the U.S. House of Representatives and the Senate. Being in those buildings and communicating with those people were powerful experiences that changed my mind about how our government and its representatives work together to create change for all of us.
Another part of our journey was a tour of the White House. Walking with my fellow classmates and our interpreters and teachers up to the White House was very moving for me, especially knowing that the last person with deafblindness to meet a United States president was Helen Keller. We walked through the East Reception Room where most people wait to meet the first lady. A secret service agent explained to us that former first ladies' pictures were on the wall. She then described each room we toured and some of the contributions made by those who have lived in the White House. We were allowed to touch items in each room very carefully. We saw the Green Room, the Red Room, the Blue Room, and the State Dining Room in all of their grandeur. We tried to get descriptions that were as detailed as possible from our interpreters and teachers.
We traveled through the Vermeil, China , and Diplomatic rooms before reaching the East Room. When we arrived there, I looked to my left and saw what looked like a harpsichord, which I discovered was actually the White House piano. I looked at my interpreter and we both smiled because I am a composer and musician. The agent told me that I could play a note if I wanted. I told her I couldn't because I was so nervous. She offered again, and I just could not resist. I walked calmly over to the piano, touched the top of it and then the highly polished keys, and played my favorite jazz chord with a small melody above it. I just let the chords hang on and listened to how it sounded in the big room. I stood in shock as the agent told me, Stevie Wonder played that piano. I just could not believe what I was told! I was in shock all day. Not many musicians have a chance to play the White House piano! What an honor for me. The agent told me that it was a one-of-a-kind Steinway made for the White House. It is supported by three golden eagles and has beautiful red felt inside.
After that wonderful experience, we retreated to a local restaurant while we waited to return to the White House to meet President Obama. While waiting, we were so worried that something would come up and cause our visit to be canceled. But it wasn't, and we were all thankful. We approached the East Gate and went through security, got our passes, and proceeded to walk up the driveway and into the reception office to wait our turn to meet President Obama in the Oval Office. We visited as a group, with our interpreters, staff, and teachers all trying to imagine what it would be like. We were called by the agent to walk in a line down the hallway and towards the Oval Office where President Obama was waiting for us. In the small hallway, an entry way was visible where one-by-one we walked into the Oval Office to meet him personally.
My interpreter introduced herself, and then President Obama asked me my name, where I lived, where I went to school, and how I liked Austin . He said that he liked Austin and liked to visit there. He then asked me, Who is your buddy with you?, meaning my guide dog, Umbro. I told him Umbro's name and that he is almost 6 years old. He then reached down and petted Umbro and said, Umbro is a good boy! He also visited with the other dogs in the room, Jerry and Spencer. President Obama said I wish my dog behaved as well as your dogs; he is still a baby.
It was then time to gather as a group for a professional photo with the president. President Obama then let everyone know that he is proud of our efforts in D.C. and that he supports what the Helen Keller National Center is doing for the deafblind community. We then stood for a group photo, and shortly after, I began to make my way out since the agent told us to start heading out of the office. I didn't realize that the president was still visiting and saying good-bye to the other students. My interpreter and I started to turn away, and President Obama called my name, Crystal ! He made an effort to call me back into the room to say good-bye and wish me well in the future. I just wish I was able to hear him speak. We shook hands for the last time, and I said, Thank you very much, and proceeded to walk out of the Oval Office into the hallway where we were all in shock after meeting the president and getting to visit with him.
What an amazing experience for us all, a once-in-a-lifetime event. We are all so proud to be the first deafblind group since Helen Keller to meet the president and to be the first disability group to meet our new president of the United States of America . We are all so honored.
Crystal Morales is from Austin , Texas . She is a recent graduate of East Central University in Oklahoma and has a B.A. in Human Resources with an emphasis in vocational rehabilitation. She is an accomplished musician and composer and an experienced presenter on the topic of deafblindness.
Internet Social Networking Sites: Building Community One Friend at a Time
Internet social networking sites have become a part of our culture. They provide opportunities for interpersonal connection that transcend race, religion, and creed, and in many ways, disabilities. Two of the most popular sites, MySpace and Facebook, have more than one hundred million subscribers worldwide. The popularity of these sites has influenced how Americans share information and express their social, political, and economic interests. During the 2008 presidential election, the Obama campaign adeptly used these sites to cultivate the interest and energy of youth who had previously been passive observers of the democratic process.
Social networking sites have also created a more level playing field for people with disabilities. This includes people with deaf-blindness who often lack opportunities to forge meaningful relationships because of the challenges that combined hearing and vision loss create for connecting with other people and accessing information. This article explores the impact, challenges, and usefulness of social networking sites for deaf-blind youth. Many of the young adults who were interviewed are avid Facebook users who are either pursuing academic degrees, looking for employment, or developing life skills.
Facebook was originally created as a free-access social networking website to connect friends within college communities. It allows subscribers to share personal information and photographs about their lifestyles, interests, friends, and communities. Subscribers can invite friends to their Facebook page, join organizations, become founders of organizations, support causes, and engage in online conversations.
The growing popularity of sites like Facebook have made it possible for deaf-blind youth to expand their social networks, cultivate friendships with a broad range of people, and join national organizations that support social causes they care about. Howard, a graduate of the National Technical Institute for the Deaf (NTID) has been a long-time subscriber to Facebook and likes the personal touch it gives him that he feels is missing when e-mailing. Facebook is appealing to me, he says, because I choose who I want to share my life with, and these friends within my network can learn more about me in a more natural way. When I show photographs of me laughing at my cousin's wedding, it tells more about me than an e-mail describing the same wedding. He also likes having the ability to control the stream of information he shares with friends and acquaintances. He says, I like that for a point in time we are playing on the same field as people without disabilities and we are not seen as disabled, as we are offline, and that is refreshing for me.
Howard uses the program ZoomText to magnify the font size on his computer screen and finds that it works well with Facebook. Kata former student at the Helen Keller National Centeruses Jaws 10, a voice output program and likes how it interfaces with Facebook as well. I can check my mail, she says, and connect with friends from my childhood. Other than the excessive advertisements and the incompatibility of various applications created by private users, I find Facebook to be easy to navigate.
Facebook encourages users to be a part of a social community and to expand that community to befriend others whom one would otherwise not have met. The usual places where teens gather after school are typically not easily accessible to youth with unique needs and limited resources. Social sites like Facebook appeal to many youth with deaf-blindness because, historically, they have not had the opportunity to forge friendships and often find themselves in the position of being mostly in the company of paid personnel (Petroff, 1999, p. 103). Jason, a recent college graduate, would like to see these social networking sites used to improve the lifestyles of and perceptions about youth with sensory impairments. Jason says, I use Facebook to gather information about events and to share experiences with my peers and adults who may not know that we are capable of doing great things too. Parents are the hard people to convince that we can be independent and still make mistakes just like other people. He likes to think of Facebook as a resource for youth who might feel more comfortable asking friends within this community for help with issues that they are not comfortable discussing with parents or school personnel.
While in high school, Greg had a passion for art and skill as an artist but often complained about his vision. He thought that buying a good pair of glasses would remedy his situation. He was not aware that he had Usher Syndrome until he graduated and began to consider employment options. He was embarrassed to speak with his family and was overwhelmed by the prospect of having to research and educate himself about the topic. He learned about an Usher group (Usher Life) on Facebook where he could ask other people about their experiences. This helped reduce some of his anxiety. Greg says, There are a number of different organizations and forums created by people with disabilities that I feel I can be comfortable joining, and I don't feel alone as much.
Many organizations representing people with disabilities have recognized the importance and popularity of sites like Facebook. The sites allow organizations to publicize events, request donations, maintain a national presence, and expand their membership base. Jason started his own deaf-blind group and was excited to learn that 80 members consisting of consumers, professionals, and family members joined within the first week. He also learned that there were deaf-blind communities in other countries that were excited to connect with like communities of people in the United States . Jason's online community now includes people from Japan , Ireland , Australia , and the UK .
Jason recognizes the value and opportunity of forging relationships with a variety of people. I decided that I should encourage adults in the American Association of the Deaf-Blind (AADB) to join Facebook. He says, I shared my members with them so now we are a larger community, which is good for people who want to connect with a big organization and not just me. He continues to encourage people he meets at youth workshops to join these organizations and use them as resources for issues they consider to be important.
Deaf-blindness is a disability of access. This can be literally interpreted as lack of access to environmental features such as ramps, elevators, and accessible transportation, but also as lack of access to information and to people. It adversely impacts social, educational, and personal development. The use of social networking sites bridges some of these gaps, but young adults are often vulnerable and may find the nuances of online social sites difficult to understand. There are communication barriers, misunderstood social overtures, and the danger of befriending a person who may not have one's best interests at heart. Laura, a high school student who likes to search for friends she meets at camp, warns others to be cautious when making new acquaintances online. "I made friends with a man who didn't care that my English was not that good, she says. He didn't care that I was deaf either. I liked him, but he started to ask me for money, and when I told him I was broke he stopped chatting with me.
Art Roehrig, the president of AADB, issued a warning in one of the organization's newsletters about scammers who attempt to illegally use the organization's name to solicit money through the instant messaging services of popular Internet service providers. Both of these examples highlight the inherent risk that exists when using the Internet. Youth who are inexperienced may perceive these social sites as safe places and should be taught to exercise caution.
As they increase in popularity and continue to attract new users both young and old, social networking sites may change how people process information. President Obama's inaugural address was reportedly attended by 120,000 Facebook users who were logged on to post and share comments. This included members of the disability community interested in employment, health care, housing, and the stimulus and recovery package. CNN partnered with Facebook to conduct opinion polls on the housing crisis and the future prospects of the economy during their live coverage. One of the young adults, who was not able to watch the address but had been following the updated postings on her Facebook page, wrote on her page the next day, I missed the speech last night but I voted for him. It was the first time I ever voted and now he is president. How cool is that?
Petroff, J.G. (1999). A national transition follow-up study of youth indentified as deafblind: Parent perspectives. (Doctoral dissertation, Temple University ).
CHARGE Syndrome Conference
This year's CHARGE Syndrome Conference started on July 23 with a preconference, the first ever CHARGE Syndrome Conference for Professionals. Historically, we have integrated Professional Day into the first day of the conference. At previous conferences, this gathering of professionals (medical/scientific, education, and special education), college and university training program faculty, and parents, has been an informal opportunity to discuss interests and research and provide a forum for posing questions and providing answers. Because of the increasing number of professionals joining the conference and wanting more information, this year Professional Day became a bigger, more formal event. Twelve professional papers and 16 poster sessions were presented. It was very well attended, and we are hoping that new interest in CHARGE Syndrome will be sparked as a result of the attendees'sharing knowledge that will benefit children and adults with CHARGE Syndrome in their own states and countries.
The official start of the 9th International CHARGE Syndrome Conference was July 24, with the largest ever number of participants. Over 757 people converged on Bloomingdale , Illinois , from most corners of the world. Participants came from several countries including Canada , Australia , Israel , and Chile , and from most of the United States . Families, professionals, and young adults and adults with CHARGE Syndrome came to hear professionals in the fields of education, gene research, hearing loss, and related fields, discuss a wide variety of topics that included cochlear implants and bone-anchored implants, the impact of CHARGE Syndrome on vision, and parenting issues (e.g., the neonatal intensive care unit experience, stress, and planning for future needs). We also had two sessions specifically for those individuals over 18 years of age with CHARGE Syndrome who are getting ready for work and/or planning for college.
In addition to the academic portion of our conference, we also offered entertaining events: the first ever Conference Idol talent extravaganza, a visit and show by Rachel Coleman from Signing Times (a very popular video series focused on teaching young children sign language), a silent auction, and the ever-popular carnival, complete with a DJ and dancing. It is safe to say that a fun time was had by all during the 3 days of the conference.
As a member of the board of directors of the CHARGE Syndrome Foundation, I would like to invite you to visit our website at www.chargesyndrome.org to learn more about who we are, who we serve, and what our mission is. You will also see several informational packets related to CHARGE Syndrome that are downloadable for free. You may also want to visit www.perkins.org for a new webcast related to CHARGE Syndrome. Perhaps we will see some of you at our next conference in 2011 in Orlando , Florida !
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