A QUARTERLY NEWSLETTER ABOUT VISUAL IMPAIRMENTS
AND DEAFBLINDNESS FOR FAMILIES AND PROFESSIONALS
A collaborative effort of The Texas School for the Blind and Visually Impaired
and Texas Commission for the Blind
Spring 2005 Volume 10, No. 2
TABLE OF CONTENTS
Turning ―Me‖ to ―We‖…………………………………………2
How I Learned What O&M Means………………………….8
Time to Think–
Preparing for Your Child‘s Hospital Stay……………12
Supporting Friends During Hospital Stays……………….17
Oh Yes You Can:
How Creativity and Assistive Technology
Helped My Child to Do Class Reports………………21
Sharing My Story With Those Who Need to Hear………27
Including Braille and Literacy in the Home: Don‘t Let
Your Summer Be a Vast Wasteland…………………31
Some Things to Learn from
Learning Through Touch ………………………… 43
Accommodations for Visually Impaired Students on
Statewide Assessments…………………………….. 55
NEWS & VIEWS
Of Alan Koenig………………………………………………60
Of Sally Mangold……………………………………………63
Want to Help Blind Children Succeed?
2005 Texas Symposium on Deafblindness: Awards, Learning Opportunities, and Community Building…………73
A Special Report: The National SSP Pilot Project……...78
Regional, State and National Training
Listings and Events………………………….………...85
Turning “Me” to “We”
By Edgenie Bellah, Family Support,
Texas Deafblind Project
Abstract: Find out about the first class of the Deafblind
Family Leadership Series and how they are putting their learning into practice by being top-notch leaders within their communities.
Keywords: Family, blind, deafblind, leadership, training
Turning ―Me‖ to ―We.‖ Although Dee Dee Elberle, Grant
Project Coordinator with The Arc of Texas, originally shared this phrase as a definition for advocacy, twelve parents from around Texas have adopted it as their unofficial motto for the yearlong adventure they are taking together as members of the first Deafblind Family Leadership Series. Sponsored by the Texas Deafblind Project, the new series assists family members to hone their leadership and mentoring skills so that they can have a strong voice in the decisions being made about services and supports for their children with deafblindness.
From the moment the Class of 2005 roster was finalized, they began setting themselves apart from traditional training participants. The small class of twelve represents the diversity of Texas and the parents have already demonstrated an interest in making an impact on services and supports for children with deafblindness in their local communities as well as statewide. Nominated for the class by professionals in the fields of education and rehabilitation, and officers from DBMAT and TAPVI, each participant made a wholehearted commitment to
participate in three trainings in Austin, complete Project SPARKLE, participate in a variety of distant education activities, and do three follow-up projects.
Front Row (left to right): Denise Sewell (Gilmer), BJ Bond (Wylie), Michelle Goodwin (Ft. Worth). 2nd row: Wayne Thompson (Sweetwater), Alicia Porras (El Paso). 3rd row: Teresa Dafft (The Woodlands), Mira Lopez (Copperas Cove), LaChandra Noel (Houston), Alaine Hinds (La Porte), Yolanda Scarlett (Coppell), Edgenie Bellah (TSBVI). Back Row: Jennifer Holweger (Pflugerville), Lisa Wick (Burkburnett).
The class came together for the first time in October. The weekend was spent studying the basics of
deafblindness. Building on what they learned through Project SPARKLE, participants received training from the Texas Deafblind Project staff to broaden their
understanding of deafblind issues beyond what they already knew about their own child. After the training, each of the parents completed a small follow-up assignment that demonstrated their understanding of deafblindness. Follow-up projects for the class included giving presentations to parents and teachers, writing articles, working with the media to increase awareness, and parent mentoring. Although the intent of the projects was to illustrate their knowledge, the actual outcome was a powerful demonstration of the talents of these parents!
Everyone came back together the first weekend of December to focus on understanding the community, educational, legislative, state agency and medical systems, and how to provide advocacy and leadership within each system. The follow-up assignments were designed to demonstrate the participant‘s leadership skills. Again, the high caliber of the class came through clearly. Emerging from the class were projects such as serving on state level workgroups, serving as editor for a special education booklet for a local school district and presenting at a family conference.
Becoming effective mentors will be the focus of the training session in late April. The best support a family receives sometimes comes from other families who have also ―been there,‖ and as leaders in their communities, class participants have already stepped up to the plate and offered this invaluable support to other families. Because this is the last training in the Deafblind Family Leadership Series, the follow-up assignment will combine all the training into a systems-change project. Again,
showing their dedication to the deafblind community, several participants have already started their projects.
To accommodate the participants‘ busy lives while attempting to quench their continued thirst for knowledge, the training includes some distance education activities. Beginning in the fall, the class began learning more about the Special Education process by reviewing several documents and articles and going through a guided book study. Through group email discussions and a couple of telephone conference calls, everyone will have an opportunity to discuss what TEA, Advocacy Inc., and The Arc of Texas have to say about being an effective advocate for children with disabilities. Using a similar format, the class will study active learning and Orientation and Mobility more in-depth for students who are deafblind multiply disabled.
And if all this weren‘t enough learning to jam into one year together, the class has yet another project to complete in order to graduate. To pull everything together, each participant will be completing the Parent Portfolio Notebook: Turning Life Experience into Credentials workbook, a tool developed by the Family Resource Center Network of Los Angeles County. This workbook will help participants take those incredible life experiences they have had caring for their loved ones with deafblindness and turn them into credentials that open doors to leadership opportunities.
Balancing family responsibilities and leadership activities can often be hard. However, maintaining that balance is 6 FAMILY
essential in order to be an effective leader and to avoid burnout. Throughout the training, participants receive information and support through telephone conference calls, group email discussions, being mentors with each other, and individual consultations to develop strategies that will help them proactively take care of their personal needs while also being leaders. This strand is
affectionately called ―Taking Care of Ourselves.‖ This aspect of the training is used to remind ourselves of the importance of bringing joy into our own lives as well as the power of ―we.‖
I anticipated being the energy and planner behind the training, but this class clearly stepped up to the task of designing their own learning opportunities. We‘ve experienced several unanticipated outcomes of the training. The class quickly came together as a cohesive, effective group that is building upon each person‘s skills and talents. The degree of mentoring and resource sharing has flowed well beyond the twelve parents to benefit families across the state. The follow-up projects far exceeded any expectations we had when we wrote this activity into our state‘s deafblind project grant.
In the Family Section, you will be hearing from several of the Deafblind Family Leadership Series participants from this first class. This summer, applications will be going out to pull together the next group of potential leaders. So don‘t be surprised when one of these talented leaders taps you on the shoulder and says, ―You‘re next!‖
How I Learned What O&M Means
By B.J. Bond,
Deafblind Family Leadership Participant, Wylie, TX
Abstract: One of the Deafblind Family Leaders share her experiences in learning what O&M means for her young daughter who has multiple disabilities.
Keywords: Family, blind, deafblind, Orientation & Mobility
I‘ll never forget the very first IFSP for our younger daughter. Milena was only three months old and had already been diagnosed with Cortical Visual Impairment before she ever left the NICU. There was a teacher of the visually impaired present (TVI) at the IFSP and vision services were set at once a week. As we were signing the papers, she leaned to me and said, ―I‘m certified in O&M, so I‘ll be working on some of that too even though it‘s not in the IFSP yet.‖ She smiled and patted my hand, so I
assumed this was a good thing and smiled at her with a convincing, ―Okay.‖
Whatever O&M was, she was welcome to do it. Milena had endured what we call ―a bumpy start to life,‖ which amounted to an extreme lack of oxygen at birth (she was resuscitated after delivery), followed by a massive cerebral stroke during her first week struggling to survive. We knew we were going to need all of the help we could get for Milena to make any progress at all. So whatever this O&M thing was that the helpful vision teacher would be squeezing in was certainly fine with me.
During that first year, I learned how to explain to my friends what the TVI does with my daughter. They would look at me puzzled, asking what on earth would be done during the times she came to our home. I finally learned to say, ―the teacher of the visually impaired works with Melina on learning a particular objective through directed play with specific toys.‖ It sounded fancy enough. But I never mentioned that the vision teacher was also doing O&M. There was no way to explain what I still didn‘t know. During her visits, I noticed that our TVI was using descriptive words like, ―behind‖, ―beside,‖ and ―next to,‖ as well as colors of objects such as ―the red ball‖ or ―the pink pom-pom.‖ I thought she was insane for using these
specific terms that Milena obviously could no more understand than our cat could. Why was she so insistent on specifics?
The answer would come during our second IFSP meeting, when O&M services would actually be added in formally. It was here that O&M was spelled out for me, and I learned that it meant Orientation and Mobility. Once I had the official name, I bravely stepped in by asking what exactly would be done during the O&M session. The TVI/O&M teacher explained that she would be working on helping Milena get oriented so that she could move about in her world. Now this really sounded crazy. Milena had just been diagnosed with cerebral palsy and wasn‘t even sitting up by herself, much less trying to crawl or walk or anything else. And we‘re
talking about moving through her world? The look on my face gave me away. The O&M teacher smiled at me and said, ―I know she‘s not moving anywhere on her own. But if we start now, giving her ideas about relations in space—
directive and descriptive words—then when she is starting
to move on her own, she‘ll already know where her left and right are, along with beside her and behind her, as well as all the colors to help her navigate. We have to plant that seed now.‖ Okay, now this made sense. We
were laying groundwork for the day she would walk and tool about on her own.
In the next few months, it became apparent that walking was a further-reaching goal than we had thought. Milena had finally just learned to keep herself in the sitting position without holding on to anyone. She made it perfectly clear that she wasn‘t going anywhere alone. During O&M sessions, the teacher would get down in the floor with her and try to get her in different positions: resting on her hands, kneeling, all fours. This looked like the same work that the Occupational Therapist was doing. If Milena wasn‘t going to walk, and everything during O&M seemed a repeat of the occupational therapist visit, why were we even keeping O&M in the mix?
It seemed pointless until one afternoon when I was playing with Milena and I tried to convince her to get on all fours to play. By this time, we could tell she could see people, and she would often look at us right in the eye. On this particular day, she began fighting me immediately so I somehow positioned myself where I could see her face better and she would hopefully see me. She looked up at me and cried out with the most pained and scared look on her face. I instantly scooped her up and held her close to let her know that she was okay. When I mentioned this the next day to the O&M teacher, she looked at me and simply