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Article on CHARGE Syndrome

Here is an article written by a friend of ours. Liz Lewis has a sister who is an adult with Charge Syndrome.  Liz is also an anthropologist who uses her profession to better understand the disability community.  Her latest article,  In the Community but Alone is about her sister's community living arrangement and, more broadly, on the need for more social inclusion and services for adults with disabilities in our communities.  She has given me permission to share so feel free to pass it on if you like.  Also, I encourage you to check out Bloom (a blogspot for parents who have kids with disabilities). 
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Tactile Timer

image of tactile timer in useThese pictures depict a tactile timer to use in anticipatory routines. You can pair this with a kitchen timer that has the dial and rings when it's done. You would set the timer for 1-3 three minute intervals and each time it goes off, the student would pull a piece off of the tactile calendar and put it in a finished basket. When there are no more tactile strips on the timer the activity is finished. With this timer we are using strips of different textured material. You could also use ping pong balls velcroed to a piece of carpet, etc.... It's really the concept of anticipation and counting down to the end that you are trying to teach. [caption id="attachment_161" align="alignleft" width="150"] Tactile Timer in Use [caption id="attachment_160" align="alignleft" width="150"] Tactile Timer               Chris Montgomery Education Consultant Deafblind Outreach Texas School for the Blind...
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New Closed-Captioning Glasses Help Deaf Go Out To The Movies

This story is from All Tech Considered  Technology News from NPR. by RACHEL ROOD May 12, 2013 3:48 PM There will be a special attraction for deaf people in theaters nationwide soon. By the end of this month, Regal Cinemas plans to have distributed closed-captioning glasses to more than 6,000 theaters across the country. Sony Entertainment Access Glasses are sort of like 3-D glasses, but for captioning. The captions are projected onto the glasses and appear to float about 10 feet in front of the user. They also come with audio tracks that describe the action on the screen for blind people, or they can boost the audio levels of the movie for those who are hard of hearing. Randy Smith Jr., the chief executive officer for Regal Cinemas, says he has worked for more than a decade to find a solution to this problem. He tells Arun Rath, host of weekends on All Things...
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Handsmatter Workshop

hands signing         On February 21, 2013 a HANDSMATTER workshop took place with deafblind students and their interveners and teachers at the Texas School for the Blind and Visually Impaired in Austin. The workshop was led by the European artist Guido Dettoni. Handsmatter at TSBVI Video.Captions are available in: English – Transcripts:  English – Spanish – Italian Please share your comments and interpretations on the YouTube videos. The artist also facilitated the Handsmatter workshops with participants at the Texas Symposium on Deafblindness in Austin, TX on February 22-23, 2013. An unexpected experience with 8 hands together evolved. 8 HANDS Video Please share your comments and interpretations on the YouTube videos. Thanks to the support of TSBVI, NESHER Stichting and FESOCE (Spanish Deafblindness Federation). Previously Guido Dettoni had performed with APSOCECAT the first Handsmatter workshop oriented to this community. Out of this experience arose a tactile symbol for Deafblindness, the DEAFBLINDSHAPE. For...
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NATIONAL INTERVENER CREDENTIAL

Picture of Ruthanne “Mimi” Cisneros Garcia[caption id="attachment_126" align="alignleft" width="150"] Ruthanne “Mimi” Cisneros Garcia In October 2012 Ruthanne “Mimi” Cisneros Garcia became the first in Texas to be awarded a national Intervener credential.  Mimi completed her coursework through Utah State University. She did her practicum with a deafblind student at the Texas School for the Blind and Visually Impaired.  Jenny Lace, Education Specialist with the Texas Deafblind Outreach Project, was Mimi’s coach during her practicum at TSBVI.   Mimi applied for a national Intervener credential to:    The National Resource Center for Paraeducators and Related Service Providers (www.nrcpara.org). The National Intervener Credentialing Program, administered by NRCP, establishes common standards, competencies, and practices in a way that is both rigorous and affordable. The requirements include:  A minimum of 10 hours of credited coursework from an Institution of Higher Education (university or college). This coursework must include a supervised practicum experience.  A Practicum experience (minimum of 2 credit hours) under...
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2013 Texas Symposium on Deafblindness: Hands Matter!

2013 Texas Symposium on Deafblindness:  Hands Matter! Omni Austin Hotel in South Park  February 21st - 23rd, 2013 This year our theme is "Hands Matter" and many of our sessions will focus on the importance of developing the tactile sense and hand-use in students with deafblindness.  Of course, there are many other topics in the breakout sessions including student and family issues, professional development, orientation and mobility, communication, transition, self-determination, behavioral challenges and mental health concerns, the impact of pain on functioning and orientation and mobility.  TSBVI Outreach Programs is pleased to announce that Barbara Miles and Paul Hart will be the keynote presenters at the 2013 Texas Deafblind Symposium.  Many of you already know Barbara Miles and her valuable contributions to the field of deafblindness.  Paul Hart may be new to many of you because he is from Scotland!  Paul has collaborated with Barbara, and others, as a part of...
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Deaf-Blind Perspectives Newsletter

The National Consortium on Deaf-Blindness puts out a newsletter called Deaf-Blind Perspectives twice a year with fabulous information.  This is a great way to hear about what is going on across the nation - and often enough describes Texas initiatives, too!  In this issue is a tribute to our own, much missed Jim Durkel.   The current issue of Deaf-Blind Perspectives is available online http://www.nationaldb.org/dbp/current.htm In This Issue  Moving Forward Together D. Jay Gense One Dad’s Nuts and Bolts of Advocacy on the State Level Jamey McVicker Improving Connections among Professionals in Deaf-Blind Education Jon Harding NCDB Plans for A New Nationaldb.org Website Gail Leslie Early Identification and Referral: Partnerships in Action Heather Herbster Reflections from the Field Kathee Scoggin Moving Forward with Intervener Services Recommendations Peggy Malloy “I Can Connect!” Betsy McGinnity Remembering Colleagues Who Passed Away in 2011–2012
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Webinar on How to Provide Described and Captioned Video

A second forward-looking webinar will be presented on October 24, 2012 for teachers, administrators, and parents. In collaboration with the DCMP (Described and Captioned Media Program), the Video Description Research and Development Center (VDRDC) continues to provide a solid foundation for anyone interested in providing better access to video (including web-based) for students who are blind and visually impaired. This webinar is entitled "Do It Yourself" Educational Description: Guidelines and Tools. Topics will include: An update of the activities of the VDRDC The "Dos and Don'ts" of description Live demonstrations of two FREE software programs which can be used to add description to media  An overview of resources for obtaining described materials for use in the classroom Mary Ann Siller, M.Ed. National Consultant in Blindness and Low Vision Dallas, Texas
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Learning to Sign Together

Of the top three questions I’m asked is some sort of variation of “how can I learn sign language so that I’m staying a couple of steps ahead of my child’s communication development?”  This question is a great one to ask.  One of the best ways to promote our children learning sign language is for their communication partners – your family, including your other children –  to have enough signs to take advantage of spontaneous opportunities.  While there are great sign language classes offered in a lot of towns, it is often hard for parents to attend these classes because of busy family schedules and child care issues.  If the family happens to live in rural communities, the distance between their home and the nearest class presents a barrier.  Thankfully, the traditional sign language classes are not the only option.  Videos: Last November, Kate Hurst posted a blog highlighting Sign with...
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Top 15 Reasons To Be Part of the DBMAT and Texas Chargers Family Retreats This Year!

Texans are fond of saying that it ain’t bragging if it’s true!  Well, Texas claims the right to do some serious bragging that we have four strong, ever growing, and active family organizations.  Not only should we be proud that we have so many, but thankful that they lead our community in making services, supports, and connections the best they can be for individuals who are visually impaired and deafblind.    These four organizations are the Texas Association for Parents of Children with Visual Impairments (TAPVI), Texas Parents of Blind Children (TPOBC), Deaf-Blind Multihandicapped Association of Texas (DBMAT), and Texas Chargers. In this blog, I want to highlight the two organizations that are part of the deafblind community – DBMAT and Texas Chargers, Inc. – and their family conferences.    If you haven’t had the opportunity to participate in one of these annual events, this is your year! The 40th Annual DBMAT Family...
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Southeast Family Deafblind Transition Institute

Southeast Region Transition Institute is designed for deafblind students in their teens preparing to transition from high school to college or employment. This conference gives students the knowledge they need to know how to access their dreams for the future.  http://southeastregiontransition.blogspot.com/ Jenny Lace Education Consultant, Texas Deafblind Project Texas School for the Blind & Visually Impaired Deafblind Outreach
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Southeast Family Deafblind Transition Institute

2012 SE Teens and Mentors with Motivational Speaker, Cody Colchado Purpose The southeast regional deafblind projects along with The National Consortium on Deafblindness and Helen Keller National Center partner to offer a unique opportunity for tomorrow’s leaders.  The annual weekend transition institutes support teens and young adults with deafblindness to plan for the future, develop friendships and community, and become self-advocates.  Youth 15 years of age through 22 years of age with both vision and hearing loss and a formal communication system,  who are on a career path to work, technical school, or college are invited to apply.  Presenters who are positive role models and young adult mentors with deafblindness address topics related to transition, technology, self-determination, social skills and self-advocacy.  Separate sessions are offered to the parents featuring transition issues and opportunities to share their experiences.  Youth Outcome Goals Increase self-awareness Develop more appropriate transition goals for post-secondary education...
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High Touch and Low Incidence - What I have learned from the Deafblind Census

In a conversation I had with Jay Gense, director of the National Consortium on Deaf-Blindness (NCDB), he estimated the incidence of deafblindness for children and youth birth to 22 years old in the United States is around .01%. The incidence in Texas is slightly higher at about .017%.  This means that out of the 4 million plus students in public education in Texas, around 750 are identified as having both hearing and vision problems.  Here is a different perspective:  4 million miles will take you around the Earth at the equator 161 times.  It is almost exactly a 750 mile drive from Houston to El Paso.  Quite a difference (And you thought Texas was so big!). One of the lessons I have learned from looking at the Deafblind Census is that no two of the students are alike.  There may be 79 students who are considered deafblind as the result of...
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Teacher of the Deafblind (TDB) Pilot Program

There is a movement afoot in the world of deafblind education..... Movement afoot you say?!?!?  That's A Big Yes Pardner.... TSBVI Outreach is currently partnering with the Region 4 Education Service Center on a Teacher of the Deafblind (TDB) Pilot program. The Pilot program is just starting on it's first year of a two year cycle. Select teachers and administrators from the Cy-Fair Regional Day School for the Deaf, Katy ISD, and TSBVI's Comprehensive Programs are participating. Our goal is to start small with this group, define the role of a TDB, establish a great program for technical assistance, and grow it into a sustainable model that is recognized on a state and national level. Another really great aspect of this program is that we are able to work with Texas Tech, who has online, graduate level, coursework in deafblindness. We are encouraging our Pilot TDB's to enroll and reap the...
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Guest — Linda Hagood
I have heard that Amy Parker is no longer affiliated with TTU. This is such a great loss for Texas! Her absence will certainly i... Read More
Saturday, 11 February 2012 08:17
Guest — administrator
Yes, it is a great loss to Texas and her absence will be felt. We are also going to gain a national resource with her move, so in ... Read More
Wednesday, 15 February 2012 10:03
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An Abundance of Training on the Web

When I joined the Texas Deafblind Project over twenty years ago, there was very little training available on working with students who faced the unique educational challenges of deafblindness.  Now, the abundance of workshops and conferences is impressive.  More importantly (as we all face challenges in getting to these events) the number of web-based training activities has sky-rocketed.  Here are just a few of my favorites from TSBVI and Perkins. From Texas School for the Blind & Visually Impaired: Communication for Children with Deafblindness and Multiple Impairments Cortical/Cerebral Visual Impairment Training School-Based Therapy Training Module: a primer for occupational and physical therapists (OTs and PTs) regarding how to work with students that have deafblindness. From Perkins School for the Blind: CHARGE Syndrome: An Overview By Pam Ryan CHARGE Syndrome: Behavioral Issues By Dr. Timothy Hartshorne CHARGE Syndrome: Teaching Strategies for Children By Sharon Stelzer CHARGE Syndrome: The Impact on Communication and...
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