newsletter - philip j rock center and school · web viewpage 1 of 2a publication of project reach:...

HorizonsA Newsletter of Project Reach Deaf-Blind Services

Michelle Clyne, Editor Summer, 2016

Memories from The Family Leadership/Project Reach WeekendBy Michelle Clyne, Editor

Special report by Josh Sagez: My name is Josh Sagez, I am 18 years old and I have Usher’s Syndrome. I remember my mom telling me that we were going to a meeting in Peoria for Deaf and Blind people. I didn’t want to go because I thought it would be boring, but mom made me. By the end of the weekend I saw a boy I had gone to Lion’s camp

of 9A Publication of Project Reach: Illinois Deaf-Blind Services…Serving youth who are deaf-blind, their families, and their schools

818 DuPage Blvd., Glen Ellyn, IL 60137 - Voice (630)790-2474, TTY (800)771-1158, www.philiprockcenter.org

Serving youth who are deaf-blind, their families, and their schools

together and his brother. We had a lot of fun talking, watching basketball and hanging out. I also like learning about how to make a plan for my IEP. That was a lot of fun and we each stood up and presented what we had wrote about us. On the last day Bryan taught us about signing with touching. He was a great teacher and very funny! Now I will make my mom go again next year!

Photo above: Left to right, Bryen Yuneshko (presenter) and Angela Taylor (SSP and his assistant for this demonstration of Pro-Tactile cues), seated, crossed knees touching to demonstrate a Pro-Tactile technique. Angela’s left hand is on Bryen’s right forearm as he signs, hands slightly blurry because the photo was taken with hands in motion. In the background, Josh and Penny Sagez closely watch the demonstration.

Editor: In April, Project Reach held its annual Parent weekend in partnership with the Illinois Advocates for the DeafBlind. This year, there were new activities for teens, and three young men took full advantage of all of the learning opportunities offered! On Saturday, April 9, in Peoria, Project Reach teamed with the Illinois Family Leader Collaboration to host a great workshop, “Resources and Inspiration for Adult Family Members and Caregivers of Children with Disabilities”. The session was presented by veteran parent Nancy Brown, and self-advocates Bridget Brown and self-advocate Tyson Bedford.

Information was shared with parents, and students over age 14, on how you can start designing a purposeful life for your child with a disability (or

yourself) beginning in preschool, and how to use person-centered planning to empower youth of any age to self-advocate. Information on the process is available on Bridget’s website, Butterflies for Change, at

http://butterfliesforchange.org/Butterflies_for_Change.php Family members created plans for their children, and students attending created their own plans. This was a great start to the weekend! Photo at left: Zachary



http://butterfliesforchange.org/Butterflies_for_Change.php

Savackis, Austin Savackis, and Josh Sagaz, look intently at poster paper affixed to a wall while they write on the paper with magic markers. Penny Sagez looks on.

Next, Project Reach/IADB families gathered at the Peoria Springhill Suites by Marriott Hotel for our “DeafBlind only!” sessions. While everybody enjoyed a fun pizza dinner courtesy of Illinois Advocates for the DeafBlind, Molly Herman, a local teacher of the Deaf, taught us all signs related to eating a meal together.

Photo above: In background, Molly Herman standing, demonstrating a sign, seated next to her a sign language interpreter. People around a “U” shaped table with their backs to camera, watching Molly or interpreter, and two persons watching with faces visible, Kori Olehy and Justin Longbons. Papers, paper plates, and cans and bottles of soda pop are on the tables.

Finally, Sunday morning, Bryen Yuneshko gave an information-packed hands-on workshop on Pro-Tactile, a way to give more information to DeafBlind individuals while supporting DeafBlind empowerment. Due to limited time, he could only touch on the Philosophy, Method and Attitude of Pro-Tactile, but everybody had fun while trying some of the two- and three-way communication techniques Pro-Tactile offers. We hope to see more of Bryen soon! Photo above: Bryen, Josh, and Angela stand in a circle, Bryen’s

hands over Angela’s and Josh’s, and Josh having one hand over Angela, preparing for tactile sign language. All three have one foot touching in the center of their circle, a Pro-Tactile technique.

Classroom HighlightsBy Karen Windy, Project Reach Deaf-Blind Specialist

LAUREN BAKER’S CLASSROOM AT ARBURY HILL SCHOOL, MOKENA, IL



During the 2014-2015 school year, I had the pleasure of visiting Lauren Baker’s classroom in Arbury Hill School in Mokena. The emphasis when designing this classroom was to make communication accessible to every student and to provide a very structured schedule and curriculum. Two factors that played into this designed were routine and schedule. She had one student who was deaf-blind as well as several other students who had any combination of disabilities, including visual impairment, autism, and intellectual challenges, and other needs). As you will see below on this virtual “tour”, Lauren and her team designed many supports into the environment, as well as the daily routines of the class, that met the needs of many students, including a student with deaf-blindness.

Lauren’s classroom had multiple stations that were separated by mobile walls that helped to absorb sound. In the photo at left, there is a desk and surrounded by mobile walls. There are two chairs, and some papers on the walls.

To the left is a photo of a visual schedule with pictures showing two sessions of speech therapy, then occupational therapy. He will then go to the blue station and then the yellow station. Because these sessions are designed to keep the student’s attention and not be longer than they are able to attend, even a session of speech might be broken into two sessions, with a small break in-between. To help the student understand that a transition is taking place, Lauren uses a “Line Up” system with her students. To the right is a photo of the “Line Up” area in the classroom. Students line up on their specified

color square between every transition.



After students have identified on their schedule what they will do next, they go to that activity. They will take the card from their schedule and place it at that station. In the photo at the left, a smaller picture of a green circle is being matched with a larger picture of a green circle.

One of the stations in Lauren’s classroom also includes a “preference” area. This is an area that includes some activity that the student enjoys. It is something that he/she can work towards if motivation to continue a task or stay on task is needed. It is also a reward for good behavior or just a productive “down time”. The student is still involved in doing something, but something less demanding. In the photo on the left, the student is curled up in a special bean bag/air bag as a woman moves it around, as if he is riding it. He is encouraged to

ask for more only a few times to ensure he is still enjoying the activity.

New in the LibraryDeaf-Blind 101 Do-It-Yourself Simulation Kit

This kit includes visual simulation goggles, the “Sensory Perspectives” 2-disk interactive DVD set, foam ear plugs, and suggested activities to do while using the materials. It is available for loan for one month at a time. Contact Peggy Pausche [email protected] to make a reservation.

The following information is taken from the Vanda Pharmaceuticals White Paper and Clinical Trial Advertisement



mailto:[email protected]

WHAT IS NON-24?It's a serious, chronic circadian rhythm disorder very common in people who are totally blind, and it can arise at any age. Currently, there are 1.3 million people who are legally blind in the United States. Of the legally blind, 130,000 have no light perception, and as many as 70% suffer from Non-24.

A few of the key symptoms of Non-24 are: trouble falling asleep or staying asleep waking up groggy or not feeling as if you've gotten

enough rest an overwhelming urge to nap during the day or falling

asleep unexpectedly difficulties in managing school or work problems with concentration

Non-24 may make it difficult to focus on tasks and may affect the way sufferers interact with family, friends, and colleagues.

Non-24 occurs when the master body clock runs on its own natural rhythm. Hence the name, Non-24, which indicates a master body clock that is not 24-hours long. For unknown reasons, most people's body clock runs a little longer than 24 hours, which means most people could have Non-24-like characteristics to some degree. The difference is that for sighted people, environmental light-dark cycles signal the brain to reset the master body clock every day to 24 hours.

For people who are totally blind, there are no such light cues. The body clock is left to run its natural course, with extra minutes adding up day by day until their circadian rhythms are essentially upside down from a typical 24-hour day. Then, your cycle continues to shift until it’s back in sync with the typical 24-hour day and then begins to move back out of sync. That’s why people that suffer from Non-24 have some nights that are sleepless and days where they may feel very sleepy and need to nap, yet at other times their sleep pattern is normal.



How is Non-24 Diagnosed?Diagnosis of Non-24 is primarily based on a person’s history of sleep and wakefulness complaints. This is typically recorded in a sleep diary to show the irregular intervals of sleep and wake periods within a 24-hour period.

What are the Treatment Options for a Child with Non-24?No currently FDA approved therapies exist to treat Non-24 in children or adolescents. Anecdotally, individuals with Non-24 report that receiving a proper diagnosis is beneficial to their well-being. Following a rigid structure, particularly with regard to daytime and bedtime rituals, may provide some limited relief, but will not treat the underlying problem. Even with additional structure, good sleep hygiene practices, and sleep training methods such as Ferber’s, the child’s internal clock will cycle through phases in which they will be out of sync with the environment leading to sleep disturbances.

To learn more about Non-24 Hour Sleep-Wake Disorder please visit the NON-24 website at http://www.non-24.com/

Announcing Upcoming Sleep Studiesin Blind Children and Teens

Is your child blind? Do they have problems sleeping or trouble with daytime sleepiness? Non-24-hour Sleep-Wake Disorder (Non-24) occurs primarily in individuals who are totally blind. People with Non-24 have a “body clock” that does not reset daily. This can lead to problems with sleep and/or excessive daytime sleepiness. We are looking for parents or guardians of children and teens up to age 18 who are blind. You can help researchers understand Non-24 by taking a brief phone survey. In addition, you will have the opportunity to be informed of upcoming clinical studies recruiting in your area. The investigational medication being studied for children is approved for use in adults.

Survey participants need to be parents or guardians of children who are: • up to age 18 • blind, and • have sleep problems and/or daytime sleepiness Collected information will be kept strictly confidential.



http://www.non-24.com/

For each completed survey, a donation of $24 up to $50,000 will be made to organizations that support people with blindness.

If you want to participate in the survey, please call toll-free 1-844-361-2424 Monday-Friday between 9:00 AM and 5:00 PM ET, email [email protected], or contact us online at www.non24registry.com. Thank you!

Hot off the presses from the National Center on Deaf-Blindness!Are Intervener Services Appropriate for Your Student With Deaf-Blindness?

An IEP Team Discussion Guide

Have you heard about Deaf-Blind Interveners, but are unsure if an intervener is right for your student? This free discussion guide helps educational teams “make informed decisions about whether intervener services are appropriate for a particular student.” Sections include topics like identifying a team member with deaf-blind expertise, reviewing student evaluation data, understanding what an intervener does, using a standardized flow chart to organize the discussion and consider relevant information, summarizing the discussion, make the decision and recording the rationale. https://nationaldb.org/library/page/2598Download your free copy of the guide at https://91372e5fba0d1fb26b72-13cee80c2bfb23b1a8fcedea15638c1f.ssl.cf1.rackcdn.com/cms/IEPGuide_NatlDB_822.pdf

The contents of this newsletter were developed under a grant from the U.S. Department of Education #H326T130081. However, those contents do not necessarily represent the policy of the US Department of Education, and you should not assume endorsement by the Federal Government. Project Officer, Louise Tripoli.



https://91372e5fba0d1fb26b72-13cee80c2bfb23b1a8fcedea15638c1f.ssl.cf1.rackcdn.com/cms/IEPGuide_NatlDB_822.pdf



https://nationaldb.org/library/page/2598

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Philip J. Rock Center and School818 DuPage Blvd.Glen Ellyn, IL 60137



A Publication of the Philip J. Rock Center and School…Serving individuals who are both auditorily and visually impaired. 818 DuPage Blvd., Glen Ellyn, IL 60137 – Voice: (630)790-2474, Fax: (630)790-4893, TTY: (800)771-1158,

www.philiprockcenter.org; email: [email protected]

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