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A Publication about Visual Impairments and Deafblindness for Families and Professionals

FAMILY WISDOM

  • The Visual World in the Eyes of a Blind Child

    • Abstract: A woman who is blind describes how her family helped her to learn about the world around her.
    • Audio: The Visual World in the Eyes of a Blind Child
  • Making the switch to StarPlus: Here’s our experience!

    • Abstract: A parent describes her positive experience switching from a Medicaid waiver program to StarPlus as her son reached age 21.
    • Audio: Making the switch to StarPlus
  • The Continuum of Decision Making Supports  and Protections for a Young Adult

    • Abstract: In 2015, the Texas 84th Legislature passed two bills establishing supported decision making (House Bill 39 and Senate Bill 1881). This legislation allows families who have an adult with a disability a continuum of decision-making supports that extends beyond guardianship. The author, a parent of a young man preparing for transition, shares four main factors families and self-advocates should consider when developing an individual support plan.
    • Audio: The Continuum of Decision Making
  • Texas Chargers: Our family’s journey finding a community of support

    • Abstract: The author shares her family’s experience finding resources and connections through the Texas Chargers family organization.
    • Audio: Texas Chargers
  • Futures Planning Led Us to Touch Base: Center for the DeafBlind

    • Abstract: The author shares her family’s experience in establishing a non-profit organization to provide adult services specifically geared for people with Ness.
    • Audio: Futures Planning Led Us to Touch Base
  • The Possibilities are Endless

    • Abstract: A parent shares how her family finds opportunity for the Expanded Core Curriculum in her son’s participation in athletic events.
    • Audio: The Possibilities are Endless
  • Life After Graduation

    • Abstract: A young woman who is a TSBVI graduate describes her experience since graduation.
    • Audio: Life After Graduation
  • The Unexpected

    • Abstract: The author shares her personal journey of understanding the unexpected challenges and gifts of being married while bringing up two children with disabilities.
    • Audio: The Unexpected
  • A Family’s Participation in ECC Activities at Region 13

    • Abstract: Parent, Fran Schafers describes how participation in the Expanded Core Curriculum (ECC) activities offered at the Region 13 Educational Service Center impacted her family.
    • Audio: A Family's Participation in ECC
  • Behind a Closed Door: Ava’s DeafBlind Ability Statement

    • Abstract: A young author, who is DeafBlind as the result of Usher Syndrome, shares a poem she wrote for a school assignment where she was encouraged to express her abilities in artwork.
    • Audio: Behind a Closed Door
  • Parker’s Poems

    • Abstract: Parker, who will be a second grader school year 2017-2018, is a dual media learner. Parker’s mom shares that he loves technology, karate, and writing funny poems and stories on his Braille Note.
    • Audio: Parker's Poems
  • Letter from the TAPVI President

    • Abstract: The status of the Texas Association for Parents of Children with Visual Impairment is described, including ways to get involved with TAPVI.
    • Audio: Letter from the TAPVI President
  • Tips for Home or School: Promoting Wearing of Glasses

    • Abstract: The following Tips for Home or School can be beneficial to both families and educational staff in finding ways to help a child wear his or her eyeglasses.
    • Audio: Tips for Home or School: Promoting Wearing Glasses
  • Tips for Home or School: Questions for Parents of School Age Children in Planning Transitions to New Teachers

    • Abstract: The following Tips for Home or School can support families in preparing for changes in their child’s educational team membership.
    • Audio: Tips for Home or School: Questions for Parents of School Age Children in Planning Transitions to New Teachers

EFFECTIVE PRACTICES

  • A Developmental Sequence for Teaching Tactile Skills

    • Abstract: This article is a follow-up to “The Development of Tactile Skills” published in the last issue of TX SenseAbilities. It describes the importance of following a developmental sequence for teaching the use of tactile skills and provides another way of thinking about the progression of skills needed to be a proficient tactile learner. 
    • Audio: A Developmental Sequence for Teaching Tactile Skills
  • An Administrator’s Guide to  Evidence-Based Practices for Students with DeafBlindness

    • Abstract: This article provides a guide to aid administrators in addressing issues and practices related to students with DeafBlindness. It specifically focuses on IEP development and instruction for students with DeafBlindness.
    • Audio: An Administrator's Guide to Evidence-Based Practices for Students with DeafBlindness 
  • Suggested Resources for New TVIs & COMS:  Adding to and Maintaining Your Instructional Toolbox

    • Abstract: This article begins a new series of newsletter articles describing important resources for VI professionals, especially those who are new to the field of visual impairments. Additional resources will be added in each issue with links for accessing those materials.
    • Audio: Suggested Resources for New TVIs & COMS
  • Let's Talk DeafBlind Eligibility:  Frequently Asked Questions

    • Abstract: This FAQ article answers basic questions about student eligibility as DeafBlind andwhen it is recommended for a student to have a Deafblind label.
    • Audio: Let's Talk DeafBlind Eligibility
  • Paddles Up! Building a Dragon Boat Team at TSBVI

    • Abstract: This article describes the creation of the dragon boat team at TSBVI and the skills that students must learn in order to paddle and race their boat. It also addresses the skills they needed to learn in order to work together successfully as a team.
    • Audio: Paddles Up!
  • Active Learning Approach and the Standard Curriculum

    • Abstract: This article explains how Active Learning, an educational approach developed by Dr. Lilli Nielsen, can be used to provide instruction for students with the most profound disabilities in both the standard curriculum and the expanded core curriculum.
    • Audio: Active Learning Approach and Standard Curriculum
  • I Can't Hear You, It's Too Dark in Here

    • Abstract: Enjoy these creative works by students with blindness, visual impairment, DeafBlindness, and multiple disabilities.
    • Audio: I Can't Hear You, It's Too Dark in Here
  • Where Are All the Babies? Early Identification of Visual Impairment and Combined Vision and Hearing Loss

    • Abstract: The importance of finding and serving infants and toddlers with vision impairment, and tips for sharing information with other professionals
    • Audio: Where Are All the Babies?
  • Understanding Concept Development and Related Challenges for Academic Students with DeafBlindness

    • Abstract: This article is a research-based examination of ways to understand the development of concepts by students with DeafBlindness. It also provides practical suggestions on how to teach and reinforce those concepts for academic students with DeafBlindness.
    • Audio: Understanding Concept Development
  • Ten Important Websites for Educators and Parents of Students with Visual Impairment, Including Those with Additional Disabilities and/or DeafBlindness

    • Abstract: This article adds to the list of suggested resources for TVIs and COMS. It includes information on and links to important websites for VI professionals and parents.
    • Audio: Ten Important Websites

NEWS AND VIEWS

TX SenseAbilities - Summer 2017

By Jena Moffet

Abstract: A woman who is blind describes how her family helped her to learn about the world around her.

Keywords: audio description, concepts, visual stimuli

Reprinted with permission from Tyler Lighthouse for the Blind.  For more of Jena’s blog

It is estimated that 40% of human sensory perception is visual. If you are sighted, you might think this would be bad news for a totally blind baby. But my loved ones found countless ways to let me see the world and develop visual concepts right along with my sighted peers. Whether it was colors, animals, changing landscapes and seasons, or intangibles like height and distance, they always found a way. If you are concerned that your visually impaired child will miss out on things, I give you the following examples from my own life to prove that her world will be as big and as interesting as you show her that it can be. Use any or all of the following ideas to give your child the world!

Audio description. For most children, the world outside a moving car is a wonder of new sights. But for a blind baby, the trip could be an exercise in boredom. My parents made car trips into fascinating adventures. They told me about cows in the pasture, the changing colors of autumn leaves, new buildings under construction, and bumper stickers on cars. We rolled down the windows to smell hay and cow manure as we drove by the pastures, flowers as we drove through woods, and oil and gasoline as we drove through cities. Very early in my life, I developed the concept that the world changes as you travel. On Thanksgiving morning, my mother told me about all the balloons on the Macy’s Thanksgiving Day Parade. Through her voice, I gained all the excitement about those balloons, even though I could not see them for myself. Whether it is the inflection of your voice, or the descriptive words you use, you can bring the visual world to life for your blind child, even if he can’t touch or hear the thing that’s being described to him. If you can pair your descriptions with his other senses, that’s even better.

Capitalize on a child’s natural curiosity, to show them how concepts are connected. One chilly drizzly afternoon, we drove past a bakery. I smelled something wonderful! My Momma told me they were baking bread. I learned that the bread we bought at the grocery store had to first be baked up fresh in that bakery, before it was ever packaged and sold to us to make sandwiches. On a hot summer day, we were driving with the windows down, when I heard cows. They were in their pasture home, mooing placidly. But I learned that those cows were milk cows, and that farmers milked them, put the milk in cartons, and sold it to the grocery store, where we would buy it and drink it. A child can learn a lot of things at once, if you help her connect the concepts. If she only ever saw milk in a cup, she might not know how it came to be there. But if she heard some cows, and had held a milk carton in her hand at the grocery store, you could easily use your words to build a bridge of concepts for her, concerning where milk comes from, and how it gets to the cup.

Every person in my life was a treasure trove of information. I bought groceries with my Nanny. We touched peaches, bananas, oranges, potatoes, bags of dog food, coffee cans, and milk cartons. We heard the cash register, so she told me how it worked. We smelled all the scents in the grocery store, and she told me what each one was. That’s how I learned that grocery stores were divided into aisles, and that aisles contained categories of items. We felt the chill of the freezer section, and I learned that meat, milk, fruits, and vegetables need to be stored in cold places. My Grandpa kept a garden every spring. I felt the dirt, the seeds, the growing vegetables and weeds, and the vegetables just out of the ground. I heard the sound of the tiller, and learned from him that he used that tiller to turn over the soil, to get it ready for planting. I gained a strong sense of the way that food comes to us, from seed, to prepared food. I stood behind the pulpit at my church, next to my preacher, and it gave me a concept of what it must be like to look out into an audience and address a group. My uncle held me up one day, so that I could touch the ceiling. It gave me a tangible concept of how tall a house could be. These instances may seem inconsequential, but each one built upon the others to give me a sense of myself in time, in space, in relation to everything that was around me. I learned early that no person was too young or too old to teach me something about my world.

Translate visual information into other senses. Concerning clouds, my uncle told me they looked like they would feel like marshmallows or cotton, and that they could change shapes. I imagined that God was finger painting with the clouds, rearranging them to his liking every day. When I was in school, and science taught me that clouds are made of gas, I just married the two concepts, to realize that a thing could feel one way, and look another. The correlation doesn’t have to be perfect. It just has to give meaning to the world. For example, my living room walls are painted “peach linen.” In my mind, this color becomes its own scenario in which I am at my Grandma’s house with the windows open on a hot summer evening, sitting with my legs beneath freshly laundered cool sheets, as I eat moist fluffy peach pound cake. That scenario represents peach linen to me. It may not be what you would see visually if you came into my home, but it gives meaning to what would otherwise be a purely visual concept.

The smallest and closest things can be the most interesting. My very first VI teacher, Joyce, taught me that the world right outside my door could be fun. I held a ladybug. We petted my Grandma’s cat, and felt how she always found a patch of sun to stretch out in. I could feel that she would lie on her side with all four feet stretched out, and I noticed that she would turn her head and lick her paws or her flanks. That’s where I learned how cats bathe. Sighted children pick up on these things automatically, as they view the world around them. For the blind child, it is simply a matter of having the freedom to explore, and the confidence to question. Sighted friends and relatives can encourage this spirit of exploration by talking about what they see and hear around them.

Freedom of movement: I rolled down the grassy hill outside my Grandma’s house, just because it was there and I could roll. I climbed up on chests and jumped off again. I spun in circles, for the sheer joy of spinning. I hung upside down over the back of the couch, just to see what it would be like. I stomped in mud, splashed in water, buried my hands in sand, kicked my feet in gravel, and walked on bubble wrap.

Sometimes in an attempt to keep a blind child safe, sighted caregivers discourage movement and exploration. It is essential to keep a child away from serious harm, but falling down a few times is a normal part of childhood, and the benefits of playing and feeling that freedom to explore far outweigh the costs.

Get into stuff: Whether it was the pots and pans in my Grandma’s kitchen cabinet, my Momma’s makeup bag, or my Grandpa’s toolbox, I was encouraged to check everything out. I held wrenches and screwdrivers in my hands, learned the difference between lipstick and foundation, and learned what was cooked in each pan. It may be temporarily messy for the parent, but the knowledge gain by the child will be priceless.

Visual experiences don’t have to be off limits. In 1980, 3D glasses were all the rage. You bought these cheap feeling glasses, and you could watch 3D movies on your television at home. I could see absolutely nothing with those glasses, but you better believe I had a pair! I sat right there in front of that TV with my brother who could see, we watched Superman, my Mom made frozen pizzas, we drank Dr. Peppers, and had a big time. I remember the experience, and it doesn’t matter that I missed out on the visual aspects. I got an Atari 2600 for my eighth birthday. I was blind, I think my high score for PacMan was 26. But I played those video games right along with everybody else, I had fun, and most of all, I felt a part of things, right up there with my sighted friends who went to the arcade. If you emphasize the fun parts of an experience, and don’t dwell on the visual aspects that a child is missing, the child will automatically do the same thing. It was a rare day that I ever felt left out as a kid, because my parents blessed me with the knowledge of how to look for what I had, instead of what I was missing.

Books expand the world. Everybody read to me, from my parents, to grandparents, to aunts and uncles. I learned so much about the world I couldn’t see through stories. Whether a book is read by a loved one, in braille, or digital, blind children learn much about the way things appear visually through reading. No 1970s childhood would be complete without Sesame Street and Mr. Rogers. With help from my Mom, Grover taught us about near and far, over and under etc.

There is no right or wrong way. When you are trying to conceptualize a thing for which you have no foundation, your way is the right way. My perception of colors may be completely different from your experience of them as a sighted person. But it is worth noting that your experience may be completely different than your sighted sibling. The idea is to develop a concept that brings meaning to your world. I hope these ideas will help you to expand the world for the blind child in your life, so that the day will come when he makes a habit of doing so on his own.

TX SenseAbilities - Summer 2017

By Debbie Wiederhold, Parent

Abstract: A parent describes her positive experience switching from a Medicaid waiver program to StarPlus as her son reached age 21.

Keywords: StarPlus, Medicaid waiver, Individual Service Plan 

Reprinted with permission from Texas Parent to Parent 2016 Fall Newsletter. If you have not had the pleasure of connecting with Texas Parent to Parent before, we invite you to do so by visiting their website.

Our son has extensive medical expenses that have, until he turned 21, been covered by private insurance, traditional Medicaid through the Comprehensive Care Program (CCP) and the CLASS Medicaid waiver. (He did have MDCP previously, until his name came up on the CLASS waiting list and we switched to the CLASS waiver.) Daniel requires private duty nursing care and quite a bit of medical equipment for him to be able to live in the community and in his own (our) home. Services end with the Medicaid Comprehensive Care Program (CCP) when your child turns 21.

I knew changes were coming with the introduction of StarPlus, and had many days of angst about “giving up” CLASS – since it took us 7 years “waiting” to finally get the waiver. I weighed the options over and over, talking with the CLASS Case Manager and the StarPlus intake coordinators. I also thought at the time that he would no longer have an option when StarPlus was rolling out for all of Texas this year, so I thought we would just go ahead and do it when he transitioned from pediatric to adult care. Things have changed since that initial thought and individuals are able to keep their current waiver without switching. However, each individual’s needs vary and staying with the current waiver may be the best option for some, and not for others. We had several meetings with both case managers from CLASS and StarPlus, even preparing a “mock” budget, but in the end StarPlus was the one that would provide the best care for our son. I think we made the right decision to go ahead and switch, given the CLASS restraints (For instance, our son uses a lot of private duty nursing care. I still don’t know of a nursing agency willing to sign up with CLASS as a provider; however, there are several nursing agencies that do take StarPlus). Check with your insurance provider if your child or young adult family member requires nursing care for options. 

Since services end with the Medicaid Comprehensive Care Program (CCP) when your child turns 21, and we were already looking at having to change some of Daniel’s physicians due to “aging out”, we just added switching from CLASS to StarPlus in the mix. Luckily our son’s pediatrician helped with this transition as well, recommending an adult physician to transition to; he called and spoke with the physician prior to even meeting Daniel, to make sure it would be a good fit, and it has been! We did not see a lapse in his coverage or care during the switch, which was a huge relief seeing that his nursing care would continue uninterrupted. We’ve already had 2 budget meetings since then with Daniel’s StarPlus Case Manager (you still have to have annual budget meetings and set up an ISP --Individual Service Plan--for each year, just like the other waivers). The case managers are also required to check in with you several times a year, on the phone and in person, to make sure your child’s needs are being met. 

Our relationship with the StarPlus insurance provider has been a very good fit for us. They “go to bat” for items and services for Daniel and help to insure the best quality of care for him. If you are facing similar decisions ahead, don’t be afraid to ask questions! We are always in transition and this is just another one to add to the list of many!

TX SenseAbilities - Summer 2017

By Caroline Nelson, Parent, Austin Area

Abstract:  In 2015, the Texas 84th Legislature passed two bills establishing supported decision making (House Bill 39 and Senate Bill 1881). This legislation allows families who have an adult with a disability a continuum of decision-making supports that extends beyond guardianship. The author, a parent of a young man preparing for transition, shares four main factors families and self-advocates should consider when developing an individual support plan. To learn more about supported decision making, please visit website

Keywords: Family Wisdom, transition, guardianship alternatives

Reprinted with permission from Texas Parent to Parent 2016 Fall Newsletter. If you have not had the pleasure of connecting with Texas Parent to Parent before, we invite you to do so by visiting their website

Young adults on a typical developmental path don't immediately begin making every decision, and assuming every responsibility, the day after they turn 18. There are a variety of supports for decision-making, both formal and informal, that parents of all young adults can consider, regardless of the young person's disability or level of independence. Decision making supports can apply to medical, financial, educational and personal decisions.

There are four main factors to consider in order to make a meaningful support plan for your individual young adult with his or her own unique needs. The factors are: autonomy, capacity, responsibility for consequences, and protection.

Think about the young person you support. How much decision-making autonomy is wanted and needed? How capable is the individual of predicting and taking responsibility for the consequences of decisions? Consider the capacity for meaningful decision making or understanding the consequences of decisions. Is protection from undesirable consequences needed?

There are a variety of decision-making supports and tools to choose from, depending on the unique answers to these questions. These supports fall into four categories:

  • Autonomous decision-making
  • Joint decision-making
  • Decision-making on behalf of the student
  • Guardianship

Autonomous Decision Making

For a young adult with the most decision-making capacity and ability to handle the responsibilities and consequences that come with autonomy, parents may choose to put nothing formal in place, relying instead on parental leverage, or "power of the purse." An example of this would be when the parent sets a boundary around paying college tuition or providing a car if their child chooses (or doesn't choose) a given course of action.

Joint Decision-Making

For a young person who might benefit from help understanding decisions, interacting with professionals, and communicating wishes, but who ultimately has the capacity to make the final decision, a Supported Decision-Making Agreement or Power of Attorney might be appropriate. Both mechanisms assume capacity on the part of the student (including capacity to revoke the agreement or decide contrary to parents' wishes). These tools are permission-oriented. In other words, the young person gives the parent (or supporter) permission to assist with decision-making, but does not give away the final decision. A joint bank account serves the same function in that it allows independent decision-making by the young adult, but with the support or monitoring by the parent or joint account holder.

Decision-Making on behalf of the student

As we think more about the young person's capacity to make sound decisions or to deal with consequences, parents may consider mechanisms that do not allow their adult child access to certain types of decisions, in particular, financial decisions. Examples of these mechanisms could include becoming, or naming, a Representative Payee for social security benefits, or putting assets in trust with a trustee as decision-maker on behalf of the young person as beneficiary.

Guardianship

The final category, guardianship, supports a young person who lacks capacity to make meaningful decisions about adult needs and responsibilities. Unlike the other types of decision-making support, a guardianship removes the adult rights from the person, and vests them in the guardian. A person under a guardianship (a "ward") functions as a decision maker the way a minor (under 18 year-old) does: choices such as marriage, voting, entering into contracts, or making medical, financial or educational decisions ultimately are the guardian’s to approve. A young person under a guardianship is also the most protected from the consequences of decisions made independently.

Each of these levels of support and protection can be changed, as a young adult continues to mature. The most important thing is to consider your student's unique decision-making and support needs as he presents today. There is no one right answer.

TX SenseAbilities - Summer 2017

By Jill Bradshaw, Texas Chargers board member, parent, Austin area

Abstract: The author shares her family’s experience finding resources and connections through the Texas Chargers family organization.

Keywords: Family Wisdom, Texas Chargers, Charge Syndrome, family leadership, resources, community connections

What is CHARGE Syndrome?   
"CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years."  (National Charge Syndrome Foundation website 2012)

My daughter, Elise, was diagnosed with Charge Syndrome in 2013, and we found ourselves immersed in a whole new world with endless questions. We knew nothing about the DeafBlind world or how to deal with the growing amount of medical diagnoses that were stacking up or where to start getting her the help and support we need. We left the doctor’s office with more questions than answers and were completely overwhelmed.

Elise on the beach holding her hand up in the “I love you” sign

We were fortunate that we found the Texas Chargers organization soon after my daughter was diagnosed. Through Texas Chargers we were able to attend our first family conference a few months later and able to connect to local resources with other local families, which has helped us navigate this new world and make the most informed choices possible. 

Annual Conference

We attended our first Texas Chargers conference in 2013 when Elise was 9 months old. The annual conferences that Texas Chargers hosts take a lot of work from everyone involved, but the time spent has been invaluable to our family and is hard to put into words how much we have appreciated these conferences. 

Photo of a group of children and youth in red t-shirts at the Texas Chargers conference

The conferences bring in world experts on Charge Syndrome who can answer questions that are at the top of my mind. Getting to spend time talking to these top researchers about our daughter has been invaluable. Some of the topics we have benefited from were information on how to approach\and provide solutions to behavior, learning, communication and development from a multisensory point of view. Every year as she grows the various experts have all contributed to us making informed decisions as parents.

Providing support and resources is another important facet of the Texas Charger’s mission. During the retreat this support is provided through a variety of support groups and special informational sessions. During this time, the moms, dads, siblings, and grandparents of those with CHARGE meet to share and connect. The retreat is supported with resources from the Texas School for the Blind and Visually Impaired (TSBVI), Texas School of the Deaf (TSD), the various Educational Service Centers (ESC’s) of Texas, the Health and Human Services Blind Children’s Program and Office for the Deaf and Hard and Hearing. These partners support with outreach and information, financial assistance, and many of them attend the retreat and conference, too! Their presence helps ensure families are knowledgeable of not only what resources are available, but how to obtain them. 

Each year at the conference we celebrate a special Charger by awarding the “Star Charger” award to an individual with CHARGE. The Star Charger provides us with a presentation of life with CHARGE and ways for us to view the world through the “eyes” of a person with CHARGE. We are encouraged by their communication styles (often multimedia presentations with friends and families to put it all together), self-advocacy, and an incredible spirit. Every year these incredible presentations inspire us all. It’s the highlight of many of our weekends because it’s the very essence of why we get together: to share and celebrate the unique life of someone living with CHARGE.

While parents attend sessions, Chargers and their brothers and sisters get to attend camp and have fun in a safe environment. Regardless of age or ability, they are kept busy with crafts, games, animals, movies, and time to socialize. Some of the kids’ favorite characters usually visit, they take train rides, try horseback riding, and sensory activities are available. Then, one of the highlights of every conference is the social on Saturday night where families relax, visit, and dance. 

The author and her family at the International CHARGE Syndrome Conference in 2015

We look forward to the conference every year and also make it a priority to attend the national conferences, where a lot of the research on CHARGE Syndrome is being funded and presented. Texas Chargers supports the National Charge Foundation and encourages families to get involved. However, we find support in both groups, as Texas Chargers is able to dive deep into Texas issues and resources facing families. 

Connecting our family to local resources

As Elise grows, our family’s needs for support evolve and different questions become top of our minds, the continuing support we get from Texas Chargers has had a huge impact on finding the right medical, education, and community support that we need. 

Photo of Elise and Ivuk at Texas Chargers

When your child has a rare disorder, it is uncommon to know other families with the same syndrome. Thanks to the website and the Texas Chargers Facebook group, we have been able to connect and form friendships with a whole community of other families who are in the same phases and working on the same goals at the same times. We sometimes have local playdates with other moms, where the kids get together and play. 

Through other families we have learned about specialists, educational options, camps, and received a lot of advice in real time as challengescome up. We are very fortunate to have this larger community of families who are willing to help.

Conclusion

If you don’t have a support system as a parent, I encourage you to find one. If it doesn’t exist I encourage you to create one. Starting small with a Facebook group and having small get-togethers is one way to do this. TSBVI also has some great programs and training to help parents looking for support to connect or learn about how to start a group.

As life became a bit more normal for us and less medical concerns came up daily, I joined the board of the Texas Chargers two and a half years ago and serve as Secretary. There are nine people on the board, in addition to lots of other parents who help volunteer. Our goal is that everyone has a shared amount of responsibility making sure the conferences and other events and activities come together as planned.

If you have a child with Charge Syndrome, I encourage you to get involved with Texas Chargers, join our Facebook group, and if possible attend our 2017 Texas Chargers Retreat on November 3 - 5, 2017 in Camp Allen Texas. Learn more.

Elise with her mother and father

TX SenseAbilities - Summer 2017

By Vivecca Hartman, DBMAT Vice President, Houston

Keywords: Family Wisdom, DeafBlind, adult services, teacher of students with DeafBlindness, intervener, person center planning, futures planning.

Abstract: The author shares her family’s experience in establishing a non-profit organization to provide adult services specifically geared for people with Ness. 

As the parent of a child who is DeafBlind, you realize pretty early on that there is so much to learn! I recall the Early Childhood Intervention (ECI) years of therapists that visit your home to help you learn techniques to help your child develop. Wow, I am so grateful for those early learning years. (I do wish there was early training about communication methods for the DeafBlind, as this is so vital to establish early. All members of the family need to get accustomed to, and be consistent for the child's learning from a reliable and repetitive communication method.) Then you hit the school years where you, as the parent, get to relay all that you know about DeafBlindness every time your education team changes and keep learning and sharing as there's a lot to learn and share. Also, when you move schools, be sure to politely share information with the administration and those around your education team to ensure they have the supports they need in their environment. Now, as we are approaching the ending years in the education system, we look to the future!

In planning for life after school, it is important to visit and be familiar with a wide variety of the adult programs in your area. Planning visits and coordinating various broader team members (i.e. Blind Children’s Program/Transition Program/Vocational Rehabilitation Program, school transition planning staff, school team members, waiver case managers, etc.) to go with you on these visits to help in the planning of the future is important. Fortunately, I live in a large city with multiple options. However, as you may have guessed, none had any openings that were familiar with or prepared for a DeafBlind child.

After having spent a few years of visits and observing options, the discussions on the visits started turning into "if I had a choice I would like a place that had X from one place we observed and Y from another place." It was through this collaborative ongoing discussion that in a dream world we would have a place that was understanding of DeafBlind time, communication needs, and accessible for our son to feel safe and independent in that environment. Additionally, it would need to be a place that had enough going on that he felt engaged or had the opportunity to opt out of an activity that he was uncomfortable with. We would want friendships, comradery and healthy positive interactions with the people within the program and the opportunity to go out in the community as well. We want him to have some feelings of self-confidence and control of his day to day life, while having structure and safety built in.

Another family, the Khans, had similar ideas and a sence of urgency, as their daughter’s graduation was a year away, so we all dove in head first! The researching of options ensued by all of us. We quickly realized that we needed to create a program in order to meet the unique needs of our young adults with DeafBlindness. Our biggest breakthrough that kicked things into motion was getting some legal support in forming the company documents. Then we prepared the application to be a tax-exempt charity which helped us solidify much of the plan! The Khan's family had space to allow us to use, which is very helpful. We are also fortunate to have an awesome board consisting of great people that have a wide variety of experience to guide us.

Touch Base: Center for the DeafBlind opened its doors on June 20, 2016!

Tanya sits on the floor and touches three therapy dogs

It is an amazing place! 

The very first day I was there to go over some paper work with the coordinator, who was a teacher of the DeafBlind, she had to excuse herself to go assist with the clients. It happened to be my son. He was playing with a toy that snapped apart and broke. His intervener was taking the broken parts to the trash and the coordinator stopped the intervener to recommend that he explain to Christopher, my son, that the lid had broken so it is now trash and to have him take it to the trash together so that Christopher would learn more about what happened. So that is what the intervener did and it all was great because Christopher was part of it and did not just sit waiting while things happened that he was unaware of. It happened that when they went to put the parts into the trash, that the trash was full. So an explanation about the trash being full was encouraged and it led to Christopher taking the trash out and putting a new bag in. This became his job from that point forward! I love it!

Another day, I stopped in to see how things were going and found Christopher at the table having lunch with another client at his side. Their interveners were on the outer sides and encouraging the clients to interact. Christopher was smiling and laughing because the other client was giving him cookies. That sure made him want to keep reaching for her hand!

Christopher and his intervener enjoy outdoor play equipment

One of the biggest benefits we also plan on is for Touch Base to be a collaborative center for interveners to talk and share ideas while working with their clients who are DeafBlind. This is an environment welcoming feedback and encouraging support of all parties! I want all our loved ones who are DeafBlind to have happy fulfilling days while they continue to learn and communicate so they can be active within their community! We would certainly be happy to help others who live elsewhere to start something by sharing what we have learned in this process.

Here is the Mission Statement of Touch Base: Center for the DeafBlind:

"For people with DeafBlindness, and those who support them, to build connections with the community, promote self-respect, improve communication and daily living skills, while creating moments of joy."

To learn more about Touch Base, please visit our website 

Tanya and her intervener work with clay on a ceramics wheel.

TX SenseAbilities - Summer 2017

By Amanda Bowdoin, Parent

Abstract: A parent shares how her family finds opportunity for the Expanded Core Curriculum in her son’s participation in athletic events.

Keywords: family wisdom, DeafBlind, CHARGE Syndrome, Expanded Core Curriculum, home life

Imagine being told by doctors when your child is born that there is no chance of your baby making it, being told he is going into renal failure, needs not one but two heart surgeries, followed by more than 25 surgeries over the last 11 years. Imagine after nine months in the hospital coming home with 24-hour nursing care, an oxygen tank, having a trache tube, and having trouble gaining weight. Imagine when your baby is four months old, being told by your insurance caseworker to let him go and pull the plug. Imagine having this baby along with a twin sister, and she also needs the attention, love and support. Imagine all of that. Now, imagine 11 years later he is getting healthy, communicating with American Sign Language (ASL), walking with support and doing his first triathlon. 

My son JD Bowdoin was born Sept 13, 2005 with CHARGE Syndrome. He had visual and hearing impairments (is considered DeafBlind) and needed breathing treatments every 3-4 hours with 24-hour nursing care. I was scared at the hospital and had to make some quick decisions with my husband. I know he wanted a son and no matter what, he had love for him that I had never seen.  Today they communicate through sign language and share the love of watching Texas Christian University (TCU) football and baseball. 

JD at an outdoor event

Over the summer, JD learned to love the water and was part of the Ellis County Sting Ray Special Olympics Team. He won first place twice at the area meet in Rockwall, Texas. On September 5, 2016, JD participated in a triathlon in Waxahachie, Texas. With assistance and lots of support, JD rode a raft for the swim, and I pushed him in a stroller for the bike and run. As his mother who loves to run and is always inspired because of JD’s “not giving up” motto, I got to swim with him and run the last part of the race. It was so emotional, since 11 years ago I was in the hospital not sure of what was going on with my twin babies. Today all those worries and “what ifs” are a thing of the past, and a full life is possible for him and his family. 

JD sitting in a bicycle trailer

In the educational setting JD has specific goals that are supported through Expanded Core Curriculum, (ECC) that are addressed in annual meetings. We were able to take the ECC in the classroom and push it outside the educational setting through a program known as Ainsely’s Angels of America. Ainsley’s Angels’ goal is to build awareness about the special needs community through inclusion in all aspects of life, by promoting awareness, providing education, and participating as active members in local communities. Ainsley’s Angels does this by giving kids of all abilities across the US the opportunity to participate in races and events. 

JD on the road in a bicycle trailer riding behind the bicycle

Our family’s ability to participate in Ainsely’s Angels was made possible with the help of Rick Phelan, who calmed my fears and worries and did the triathlon with JD. JD had so much support from coaches, Kelly Rozier - owner of Buffalo Creek CrossFit in Waxahachie, John Zabojnik - an IRONMAN competitor; and the Waxahachie Running Club and Triathlon Club. Some of the comments about JD were how much he was smiling, clapping every time he saw a fellow runner and laughing every time Rick would go over the bumps. 

JD about to board an inflatable canoe

In closing, I want parents to know that anything is possible and there are people who want to run with your child and give them the smile you want to see. Today was an emotional day for my family and a day we will always remember.

TX SenseAbilities - Summer 2017

By Rachel Simpson, Family Engagement Specialist

Abstract: A young woman who is a TSBVI graduate describes her experience since graduation.

Keywords: advocacy, problem-solving 

Blessed is the word that Kieara Maps uses to describe herself and her path in life. Kieara is a 2015 graduate of Texas School for the Blind and Visually Impaired (TSBVI). She describes TSBVI as her “first love,” a “safe-haven,” and a place to be understood. 

Kieara developed an interest in the culinary arts while in high school and decided to pursue a training program at Texas State Technical College (TSTC). She said that she learned a lot while at TSTC, but ultimately decided to change her career goal.

Kieara now lives in Austin with roommates in a local apartment complex. She works as a Substitute Resident Instructor at TSBVI, while studying public speaking and communications at Austin Community College. Kieara would like to use what she learns to serve as an advocate for people with disabilities, specifically people with blindness and visual impairment. She wants people with disabilities to know that they are important and have a role in society. 

When asked what advice she has for parents of children with visual impairments, Kieara encourages parents not to “hold their kids back” by over protecting them, as the parents will not always be there to intervene. In addition, she would like to encourage parents to allow their children to make mistakes, so they can learn from their mistakes. She suggests that children also be allowed the opportunity to practice/develop problem-solving skills and learn to advocate for themselves.

I look forward to hearing more from Kieara as she continues her journey in life. To be continued…

photo of Kieara sitting next to a tree

TX SenseAbilities - Summer 2017

By Heather Joy Magdeleno, Parent, Phoenix, AZ

Abstract: The author shares her personal journey of understanding the unexpected challenges and gifts of being married while bringing up two children with disabilities. We invite you to check out Heather Joy’s other blogs

Key Words: Family Wisdom, deafblind, special needs parenting, marriage, resiliency, attachment parenting

I didn’t expect marriage to look like this. Maybe I was imagining what some of us might imagine before getting married and having children: going on trips together, creating a home together, him doing his own creative projects, me gardening, us supporting each other, loving each other. Him taking care of the bills, me doing the shopping. Maybe we would find an “open-minded” church together, maybe we would build community. Friends would come by for a bonfire in the front yard, we would host neighborhood dinner parties. We would give birth to our beautiful children, at home, in water. I would breastfeed and practice attachment parenting. We wouldn’t need to go to the doctor much because of our conscious eating and living. We would visit family whenever we wanted, in Santa Barbara and Colorado. We would visit beautiful places with our kids and camp and walk on the beach and love each other in the night. We would have the world in the palm of our hands and we would look at each other and be proud. This is the life I imagined, some of the reasons why I thought marriage and kids might be a good idea. Although I didn’t really know. Just this feeling of what it could and should be.

Then we had two babies that required constant care. The nights were broken up, rarely a full night sleep and our regular conversations were suddenly about pumping and breastmilk and poop and lack of it and exhaustion and fear of the future and survival. Our days blended into the nights and we were overwhelmed. We had moments of calm and connection and loving each other, but mostly we were caring for our babies, at times, just keeping them alive. Our marriage began to slip away. Out of fear I became controlling. Everything was out of my control, so I tried to control my husband, my mom, my family. I survived only and lived fearing the future. I started to question, “What is the point of being married anyway?” This became my attitude and I was no longer able to see my ally by my side. Walls were built and we spent more energy keeping them up than if we had softened our hearts. We lived like this for years. Unhappy. Fighting against the very person we needed.

Then one night my heart opened up to him. It was a miracle. I thought we were over. For almost a year we had been living together, lovingly taking care of our children, determined to not let go of this, but we were no longer “together”. Suddenly, on this full moon night, my heart opened and I knew it was the right thing. This man wasn't going anywhere, he was not going to leave my side. He had been with us through thick and thin and I knew I needed him.

TX SenseAbilities - Summer 2017

By Fran Shafers, parent

Abstract: Parent, Fran Schafers describes how participation in the Expanded Core Curriculum (ECC) activities offered at the Region 13 Educational Service Center impacted her family.

Key Words: Expanded Core Curriculum, encouragement, Goalball, social network

As you may know, the Expanded Core Curriculum (ECC) is comprised of nine skill areas of instruction that were created specifically for children with blindness or visual impairment. The nine skill areas include: compensatory access, sensory efficiency, assistive technology, orientation and mobility, independent living, social interaction, recreation and leisure, career education and self-determination. Many of us learn these skills by observation. Children with visual impairment have limited opportunities to observe such skills and therefore need specific instruction in order to learn and use them in their everyday lives.

Kylie's participation in the ECC programs offered through the Region 13 Educational Service Center has helped her to develop more confidence in her skill levels and have enhanced her ability to participate with her peers at school. She has used her iPad and BrailleNote for communication with her peers. They have expressed interest in how Kylie uses braille and speech output programs. Kylie has really come leaps and bounds since beginning middle school!

In addition, participation in the activities through Region 13 has helped our family bond together. When we took part in the rowing activity as a family (which we never would have thought of doing, because of Kylie's fear of trying new things) we saw Kylie develop a desire to improve herself by hearing words of encouragement from her peers. To her surprise with multiple attempts she did it!

Through Goalball, she has increased her fitness, and communication skills. When she goes to practice it makes her feel like she's part of a team. It gives her the sense of belonging and that she is not the only blind child, but there are others that can do amazing things! She comes out of it with more motivation and drive to excel because her teammates and her coach teach her to push through to succeed. Because when you get hit, you get back up! They are giving her the tools she'll need to carry her through the obstacles she'll face throughout her life and that to me is invaluable.

To be with other families that have children with same disability gives you a sense of hope, peace and encouragement. It gives us the opportunity to come together and share our experiences for our children to take, and use with them to succeed in their lives.

Knowing that you are not alone, and there are other families that deal with the same challenges, is the greatest gift. Because, when we share our experiences, we hope to encourage other families to do the same.

I just want other families to know that there are resources out there that are within your reach. Our children need to connect and build the social network they need to feel a part of a community.