By Elena Charles, Helen Jackson, Beth Weltner

A year’s worth of seasons have gone by since our beloved student Jonathan George left his earthly body.  As the anniversary of his passing nears, we would like to take this opportunity to reflect on how he changed our lives.

We were blessed by his teasing manner and how he found humor in little things.  It reminds us to take joy in the little things too.

We were blessed by the constant and ever-present support of his family, who lovingly included Jonathan in every aspect of Yup’ik life, including all types of travel and subsistence activities.  Jonathan was well traveled indeed!  He went on trips to San Francisco and Florida, enjoying all the fantastic sights.  One fall he went moose hunting with his family, far up-river to the Selatna River.  This was a highlight for Jonathan, as he loved boat rides and being out camping with his family.

We are also thankful to SESA and the DSI program for all the support and trainings they   provided over the years, through which we learned more about communication and how to help Jonathan and his family.  In addition, these trainings helped our staff to grow as a team.   Without the support of the DSI program we would have struggled to meet his needs.  Even today, we continue to apply the skills we gained with other students.

Despite all of the supports we had as a team, we did face challenges.  Jonathan had fragile health.  We constantly feared passing a cold to him or impacting his health in some way, as he was frequently ill.  His family understood our concerns and was faithful and caring in their communication with us.  We were blessed to continue working with Jonathan until his last days.

We are thankful for our relationship with Jonathan’s parents, Liz and Sam, and his brother Jason.  They blessed us through their example of love and constant welcome into their home.  Jonathan, we learned from you to never give up and to always keep trying.  We learned humility as you humbly blessed us.  Thank you, Jonathan, for being part of our lives, and for all the precious memories.

John G. Conrad, Special Education Teacher
O&M Specialist/Anchorage School District

How many times have you heard your child who experiences severe disabilities ask a question about something they cannot find or do, and become distraught over it?

I cannot tell you how many times my stepson has lost something of value and had no idea how to begin searching for it. Or, when he could not figure something out and would simply not do it because he did not know how to ask for help, or more importantly, lacked the necessary problem solving skills to solve his immediate and future problems. It really has nothing to do with his low cognitive ability.

How many times have I heard, “Where is my gym bag, John?” What exactly does it take to learn the right tools to trigger problem-solving behaviors? Sometimes it is so hard to stand back and watch a student become incredibly frustrated because they cannot think of what to do to solve a problem. I had to take my wife aside, discuss the issue, and help her look into the future. What will he do in ten years if mom is not there to help? What does he need now to help him adequately prepare for the future?

I have been teaching in the Anchorage School District for twelve years, in the field of special education. My last five years have been spent working with students who experience severe disabilities. One of the key skills for their success has been learning problem-solving skills.

If they need $6.00 for lunch in the community:
How will they get it? Who will they ask? And, how will they know if they have enough?

After all these years of teaching, I now believe that the most important instruction is that of self-determination. Unfortunately, many educators have overlooked this over the years for numerous reasons. The most frequently identified reason is that teachers do not believe students would benefit from such instruction. This perception stems from a belief that people with severe disabilities cannot be self-determined because of the nature or extent of their impairment.

Over the last five years, I have proven this perception to be incorrect. Helping a person take control of his or her self is the most powerful tool they can learn. Watching students you have taught for four years solve their own problems is one of the most gratifying feelings you will experience. Aside from all the functional academics, alternate assessment, and other activities that take time and seem so important, the most powerful and life-long lasting skill is becoming self-determined and solving one’s own problems. Consequently, reaching a level of independence never dreamed of when students were younger due to the nature of their disability.

My teaching philosophy has always been, “If you don’t expect it, you will not get it.” Thus, I spend much of my time teaching self-determination. Not necessarily from a textbook standpoint, but with more emphasis on real life situations. Many students with severe disabilities will not be able to learn all the skills and   knowledge needed to solve difficult problems. However, this is equally true for most areas in which students with severe disabilities receive instruction, a situation that has been dealt with by the principle of partial participation. This principle states that even if a student cannot   perform all the steps in a task or activity, he or she can likely learn at least one step and maximize his or her participation.

Therefore, as a teacher and parent of children with disabilities, I take this principle and apply it to problem-solving skills because it works in the same way. If I can get my stepson to find his own things, without becoming emotionally distressed, then he has succeeded in solving his own problem without mom or John or anyone else to help. The same goes for my students; if they find their own gym bag, locate the lost shoe, seek out the missing jacket, gloves, or hat then they too have found success.

Assess your student’s interests and preferences and promote choice making. Promoting active choice making is the primary way teachers address self-determination for students with severe disabilities. Making a choice involves   the identification and communication of a preference. For students with severe disabilities, there are multiple barriers to making choices. Because many such students have too few opportunities, they do not know how to make choices and need targeted, direct instruction in this skill. Other students with severe disabilities do not express their preferences through conventional means and teachers must use alternative means to assess personal preferences.

Life is a basket of choices, some are good and some are bad, but we have to make them one way or another. So I teach my students and my children at home that the choices we make will ultimately predict how successful we become. If the person with severe needs does not know how to make these choices, they must be taught. Once learned, they then have to be applied, and that can be the hardest part of all. For a teacher or parent this is tough territory.

It is wonderfully gratifying to see students succeed. It is emotionally draining to see frustration, escalation of behaviors, and feelings of being totally overwhelmed. But, through it all, they succeed one task at a time. So the next time you are wondering how to get your child to tie their own shoes, put on his own belt, find his bottle of pills or locate the backpack that contains the precious lunch-box, think about how powerful it would be if they utilized self-determination skills and solved the problem on their own.

Step back for the ride and see the success one task at a time. No matter where you stand, it is an awesome sight!

Nancy O’Donnell, Coordinator of Special Projects,
Helen Keller National Center for Deaf-Blind Youths and Adults

Rubella. This simple word can cause terror in pregnant women. If a mother contracts rubella in the first trimester of pregnancy, there is a strong chance that her child will be born with one or more health issues related to congenital rubella syndrome” or CRS.

In the United States, between 1963 and 1966, an estimated 20,000 children were born deaf, blind, with heart problems and/or developmental delays due to CRS. With the introduction of the rubella vaccine in 1969 and the subsequent immunization campaign in the U.S., the number of births of children with CRS quickly   declined. In March of 2005, the Centers for Disease Control and Prevention in Atlanta, GA, announced that rubella had indeed been “eliminated” in the U.S. Yet, our response to this wonderful announcement must be tempered, for although “rubella” has been eliminated, adults with congenital rubella syndrome continue to live with the devastating effects of this virus.

Late Onset Manifestations

In 1941, Dr. Norman Gregg, an Australian ophthalmologist, was the first medical professional to propose a link between maternal rubella and a high incidence of congenital cataracts in babies born 9 months later. Twenty-five years later, an  inquisitive group of Australian researchers      wondered what the long-term effects of rubella might be in those born with CRS in the 1941 epidemic. These researchers conducted the first longitudinal study on this topic. Their findings  suggested “late onset health manifestations” in adults with CRS – the most notable of which were higher than expected rates of glaucoma, diabetes and thyroid disorder.

The Helen Keller National Center (HKNC) became aware of this research in the late 1980s, when deaf-blind children born in the epidemic of the 1960s were aging out of the educational system and challenging adult service  agencies. HKNC surveyed families, consumers with CRS and service providers to see what was happening in our young adults. Diabetes, glaucoma, hyper and hypo-thyroidism, premature aging, esophageal problems and, in rare cases, a degenerative process to the whole body were reported. These sobering  results prompted HKNC to continue monitoring this group and encouraged other countries to do similar surveys or testing.

International Scope

Despite increased vaccination efforts, the World Health Organization estimates that 100,000 babies continue to be born yearly, worldwide, with CRS. For many reasons, the number of medical professionals, internationally, who are experienced in working with adults with CRS is quite small. Recognizing the need for information sharing and support, HKNC established two listservs on the topic of CRS and hosted an international symposium in March 2005. With the support of representatives from 12 countries, an application was made to Deafblind International to create a new network on “Rubella.” Our first meeting was held at the DBI conference in Perth, Australia, 25-30 September 2007. We hope to continue to raise awareness of the late onset manifestations in adults with CRS, encourage additional research, share   information and maintain a database of professionals who are willing to be resources. We also hope to encourage research within the “deaf rubella” world in order to strengthen our knowledge of late onset health challenges and their impact on quality of life issues, including employment.

For more information, contact Nancy O’Donnell, Coordinator of Special Projects, Helen Keller National Center for Deaf-Blind Youths and Adults, 141 Middle Neck Road, Sands Point, NY 11050 516-944-8900 ext 326;  hkncnod@aol.com or go to our website www.hknc.org

Tracy Jess, Family Consultant
Washington Sensory Disabilities Services

The physical therapist is coming this morning.  Susie has to go to the Ophthalmologist at 2:00.   Tonight is play-group.  Tomorrow is Tommy’s IEP/IFSP.  I need to remember to show the new care provider how to feed Sally through her g-tube.

Does this sound familiar to you? We as parents/guardians are so good at looking after the needs of our children.  But when was the last time you did something for yourself?  Without feeling GUILTY!

So often we get caught up in the daily needs of our child that we forget what it was like to: read a book, go for a walk, have an uninterrupted     conversation with a friend.

Reasons you need to Take Time for Yourself:

• To rejuvenate your mind, body, and soul.
• To pump up your energy.
• To reflect, re-group, and set priorities.
• To give your child a break away from you. (Yes, this is just as important for your child as it is for you!)
• To bring balance into your life.

Strategies on how to Take Time for Yourself:

• Determine what activity you would like to do and how much time it would take.
• Set an appointment with yourself just as if you had a doctor’s appointment, but this is with yourself as the physician.
• Be realistic!  Allow enough time to really  complete the activity or make sure you schedule multiple appointments with yourself in order to finish the activity.
• Solicit the help of others.  Family members, neighbors, care providers.  Many people are willing to watch someone if only asked.
• Be flexible. If something comes up that you  absolutely have to do, then make sure you reschedule your appointment with yourself.
• Keep a sense of humor.

Activities to consider:

• Read a book or look through a magazine.
• Go to a movie.Go shopping by yourself.
• Meet a friend for a cup of coffee.
• Go for a walk.
• Lock your bedroom door and take a short, power nap.
• Get a massage.
• Go to a park and just sit and daydream.
• Go to a shopping mall and watch people.
• Learn to scrapbook, dance, cook, play a musical instrument, etc.
• Think of things you loved to do prior to having children and schedule a time to do them.

Most of all remember: Your family needs you healthy, happy, and at peace.  This can only be accomplished by Taking Care of Yourself!

By Michelle Radin – DSI Specialist
Special Education Service Agency

I have a student who signs, but is losing his vision. Can I still sign with him?

Yes! Many deaf-blind individuals communicate through tactile sign language. In many ways it is just like American Sign Language (ASL), but is signed into the deaf-blind individual’s hands.

What are other situations when this might be appropriate?

Tactile Sign Language is appropriate for students who are blind and use sign language. It is also used for non-hearing impaired individuals who use ASL for cognitive, neurological, or behavioral reasons as well.

What student would Tactile Sign Language not be appropriate for?

Tactile Sign Language, like ASL, is not typically more concrete than speech. If a student’s cognitive status makes speech too complex to be accessible, then tactile signs may not be assessable   either. Other, more concrete communication     options for deaf-blind individuals include tangible symbols, specific devices, and touch cues.

How do I use Tactile Sign Language? Do I form the signs with my student’s hands, or do I sign and have the student touch my hands?

It is important that the student knows who is communicating. If you form the signs with his or her hands, the student may believe that you are prompting them to make the sign, rather than communicating to them. Additionally, manipulating a student’s hands promotes passivity. Having them feel your hands encourages choice making, to attend or not attend, as well as actively touching your hands, rather then waiting for you to touch theirs.

When the student signs to me, do I watch or feel their hands?

You may want to put your hands on theirs, to show them that you are paying attention, and are present. A student, who is more advanced, however, will have learned the role of communication partners.

Where can I learn more signs?

Here are some online resources for learning ASL or Signed English:

Online ASL resources and classes

Online ASL Classes

http://www.lifeprint.com/asl101/
A deaf individual teaches this free, on-line ASL class. I highly recommend it. It doesn’t offer credits, but for a fee you can receive a certificate saying you completed it.

http://www.signingonline.com/about/index.html
These online ASL classes cost $49.95 each, and offer 1.5 CEUs for each class. They have four levels.

http://www.aslpro.com/
This website offers additional resources for    people enrolled in or teaching ASL classes, but does not have a comprehensive class in itself. It was designed specifically for the classroom teacher. It also offers a dictionary of religious signs, a fingerspelling lesson, and a quiz.

http://www.lessontutor.com/ASLgenhome.html
This list of self-paced online lessons is free, but does not offer credits. It teaches Signed English, and explains the difference between Signed   English and American Sign Language.

http://www.handspeak.com/
This site offers many interesting classes, including ones in baby sign. They also offer tips on using ASL with students who are deaf and/or have additional disabilities. A subscription fee of approximately $5 a month buys extensive services. Make sure you are looking at the ASL or baby sign sections, and not the International Sign, Animal Talk, or “others” sections. Offers free  information as well, such as ASL grammar tips.

http://www.snow.edu/online.html
Snow College in Utah offers a full, three-credit introduction to ASL class, and an independent study ASL course online. It costs $354.

ASL Dictionaries

http://www.aslpro.com/cgi-bin/aslpro/aslpro.cgi
This easy-to-use on-line dictionary offers video clips of signs. They also have obscure words, such as “searchlight” and “jaywalking.”

http://commtechlab.msu.edu/Sites/aslweb/browser.htm
Offers more obscure signs, but the quality of the video isn’t as good.

http://www.lifeprint.com/asl101/pages-layout/signs.htm
This dictionary is good because it offers specific uses for each word in ASL. For example, for the word “know” it gives the note, “Often times the sign for “KNOW” is done on the cheek. This is not “lazy” (as some people report), this is simply efficient signing–best suited to a casual environment.” On the negative side, there are no videos for each picture, but a series of still photos.

http://www.lessontutor.com/eesASLdictionarylinks.html
This dictionary offers many common school-related words in Signed English, along with Signed English phrases.

http://www.sesa.org/ceehi/signdictionary.html
An Alaska native-specific dictionary compiled by SESA’s very own Krista Galyen.

Fingerspelling Practice

http://www.asl.ms/
Has an easy-to-access quiz. Presents fingerspelling as a series of still photos, which is more consistent with signed English or the beginning signer of ASL. Kid-friendly as well.

http://www.jal.cc.il.us/ipp/fingspell/
Includes video clips of fingerspelling examples that are consistent with advanced ASL grammar and deaf culture.

Fingerspelling Fonts

http://www.lifeprint.com/asl101/pages-layout/gallaudettruetypefont.htm
Has a Mac and PC version of a line-drawn font.

http://www.lapiakdesign.com/fonts.html
A graphic fingerspelling font that’s a bit unusual. Great for viewing at a distance, such as on a bulletin board. Has both Mac and PC versions.

http://www.tsbvi.edu/Education/fonts.html
Has some ASL and Braille fonts for both PC and Mac.

Classes in ASL that meet in person are held through UAA (http://www.uaa.alaska.edu/) and APU (http://www.alaskapacific.edu/).

Tactile Sign Language Resources

To my knowledge, there is only one comprehensive guide to Tactile American Sign Language on the web. http://www.sesa.org/?view=article&catid=53%3Adsi-resources&id=481%3Atactile-american-sign-language&Itemid=86&option=com_content

There is only one comprehensive book published on the subject. http://www.amazon.com/Tactile-Sign-Language-Conversations-International/dp/3927731803/ref=pd_bbs_sr_1/103-9192487-8184637?ie=UTF8&s=books&qid=1194293083&sr=8-1
Tactile Sign language: Turn Taking and Questions in Signed Conversations of Deaf-blind People by Joanna Mesche

Elias Kabakov and Debbie Toubi
The Center for Deaf-Blind Persons, Israel

The Center for Deaf-Blind Persons of the Beth David Institute in Israel has developed an innovative program for children with Usher Syndrome. Through work with mentors, children learn about their diagnosis and receive exposure to a successful coping model. The program is open to every child with Usher Syndrome in the entire country, including Jews, Muslims, and Christians. It aims to serve 40 children a year.

Based on more than a decade of experience working with deaf-blind individuals and inspired by the book Usher Syndrome in the  School Setting (Miner & Cioffi, 1996), we have concluded that children with Usher Syndrome need early contact with adults who also have Usher Syndrome. The children can easily identify with these adults, and interaction enables them to learn about progressive vision loss in a positive setting,   unlike cases we have seen of children who become depressed by doctors who provide misleading information and make fatalistic statements such as “You’re going blind.” We have found that children are inspired by contact with young, vibrant, and successful persons with Usher Syndrome who are enjoying an active life.

This program, which is the first of its kind in Israel, took shape under the professional and personal  guidance of Yael Halevi. Yael, who has Usher Syndrome herself, holds a BA in   Literature and is a certified movement therapist. The program begins by identifying children between the ages of 10 and 21 and  simultaneously recruiting and training young adults with Usher Syndrome to become mentors. Requirements for mentors include a certain level of maturity and life experience, good communication skills, high motivation, and an open and accepting attitude toward their deaf-blindness. The mentors participate in a mandatory training program to learn how to teach the children to function with Usher Syndrome at work and leisure and how to set an example of success despite obstacles. In addition to the initial training, the mentors all receive weekly guidance and learn how to approach sensitive issues that the children may raise, such as the desire for a driver’s license or when and  how to tell friends that they have Usher Syndrome.

Over the course of a year, the mentors meet with the children weekly— individually or in small groups. Through this structured contact, the children learn very gradually about Usher Syndrome through the presentation of facts and personal  examples. They gain skills and knowledge to help them broaden their horizons and be willing to accept help from others. They also learn to come to terms emotionally with their physical limitations. This contact is critical to future success in that it helps children gain a foundation of independence, self-esteem, and confidence. As they progress, they tend to become more open to learning mobility skills and alternative communication methods.

A double-empowerment process takes place during this program. The children learn useful skills and coping strategies, and the mentors gain valuable work experience that may lead to new career opportunities. The mentor training they participate in also provides them with a valuable support group. Most have never before participated in a similar group situation.

Early mentoring offers action and the hope of success as opposed to passivity and a feeling of impending failure. This program benefits not only the deaf-blind community, but also Israeli society as a whole. Instead of supporting these children when they become adults, it gains members of society who make valuable contributions.

The Center for Deaf-Blind Persons provides comprehensive rehabilitation, educational, and social services for the deaf-blind population in Israel. We continually develop and run a wide range of innovative programs and strive to enable deaf-blind individuals to live full and independent lives, to as great a degree as possible. The Center encourages all people with deaf-blindness to learn about their disability and helps them to cope and play an active role in their own rehabilitation and that of others.

For more information about this or other programs, please contact Elias Kabakov, professional director, Center for Deaf-Blind Persons, by mail at P.O.B. 9259 Tel Aviv, 61092 ISRAEL, by fax at +972-3-6316419, or by e-mail at elias@cdb.org.il.

Reference
Miner, I., & Cioffi, J. (1996). Usher Syndrome in the school setting. Sands Point, NY: Helen Keller National Center.
Printed with Permission from: Deaf Blind Perspectives: The National Consortium on Deaf-Blindness

http://www.dblink.org/

DB-Link is a partner in the National Consortium on Deaf-Blindness.

DB-Link is a fantastic resource for information on deafblindness. Information is well organized on topics such as: research, new parents, teaching materials, library products, online courses, etc. The site is easy to navigate and the staff very helpful.

For those wanting to read specific topics, visit the following link to access Deaf-Blind Perspectives:
http://www.tr.wou.edu/tr/dbp/

Deaf-Blind Perspectives is a free publication with articles, essays, and announcements about topics related to deaf-blind people. Published two times a year (Spring and Fall) by the Teaching Research Institute of Western Oregon University, its purpose is to provide information and serve as a forum for discussion and sharing ideas. The intended audience includes deaf-blind individuals, family members, teachers, and other service providers and professionals. Visit the following link for internet resources on deafblindness: http://www.dblink.org/lib/resources.htm

How to contact DB-LINK staff:
DB-LINK provides personalized information service to parents, teachers, and others who work with deaf-blind children. They can be reached by phone, email, or fax. They welcome questions on information needs.
By phone:        800.438.9376
By TTY:           800.854.7013
By fax:            503.838.8150
By email:        dblink@tr.wou.edu

This really is a one-stop site for information on deafblindness and related topics!