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Summer 2017

TX SenseAbilities - Summer 2017

By Ann Adkins, Education Specialist, TSBVI Outreach Program

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. 

Keywords: tactile skills, tactile learning, developmental sequence, Hierarchy of Tactile Skills, tactile development

In the previous issue of TX SenseAbilities, we published an article about the development of tactile skills. The authors stressed the importance of providing appropriate tactile experiences for students at all stages of development and suggested some resources, materials, and activities to help in the instruction of tactile skills at each stage. They also explained the sequential nature of tactile learning and the importance of having students demonstrate mastery of each step in the Hierarchy of Tactile Skills in order. This hierarchy emphasizes the cognitive aspects of tactile learning, delineating the sequence of skills needed to move from the concrete skills of tactile exploration, manipulation, and identification of real objects to the very abstract skills of discriminating braille symbols. 

A new publication from the TSBVI Curriculum Department, Nemeth at a Glance: A Math Resource, Grade-Level Chart, and Evaluation Tool (Cleveland et al., 2017…give link), includes an entire chapter on tactile skills and offers another way of thinking about the progression of skills needed by tactile learners. The authors share two different ways of thinking “in terms of both cognition and skill levels” (page 16), which are represented in the chart below. It may be helpful to examine both of these ways of thinking when determining a course of evaluation and instruction that will be most meaningful to specific students.

COGNITIVE SKILLS“The Hierarchy of Tactile Skills” from Concrete to Abstract

SENSORY SKILLS
“Levels of Tactile Learning”
Sensory Stages

 
  1. Real objects
  2. Object representations
  3. Graphic representations:

    1. Two-dimensional objects
    2. Solid embossed shapes
    3. Outlines
    4. Raised lines (solid and broken)
  4. Symbols (letters and number)
  1. Awareness and Attention 
  2. Structure and shape
  3. Part-to-whole relationships
  4. Graphic representations 
  5. Braille symbols

The chart above presents a side-by-side comparison of two different ways of thinking about the development of tactile skills. The information on the left side of the chart focuses on the cognitive issues related to tactile skills development, the Hierarchy of Tactile Skills described in the previous newsletter article (Adkins, Sewell & Cleveland, The Development of Tactile Skills). The right side of the chart emphasizes “skill levels”, delineating the physiological-sensory stages of development. It is adapted from the research of Barraga and Erin (Visual Handicaps and Learning, 1992), and while some of these sensory stages parallel the Hierarchy of Tactile Skills (the areas of graphic representations and braille symbols), it breaks down the early sensory stages into more specific components:

  • awareness of and attention to objects – “the beginning level of tactual learning” (Barraga & Erin, page 80),
  • tactile determination of the structure and shape of objects – Barraga and Erin cite a 1987 study by Klatzy, Lederman, and Reed which found that students were able to identify specific characteristics of objects in the following order: shape, hardness, texture, and size (page 79)
  • part-to-whole relationships - the necessity of developing an understanding of an entire object by “piecing together” information about the individual tactile components of the object, creating a “whole” out of the sum of its parts.

This third sensory stage requires that students build a “gestalt” of an unfamiliar object by exploring the object tactually and then using the information they’ve discovered to create an understanding of the object in its entirety. For additional clarification about the possible confusion and difficulty in this task, consider the ancient Indian fable about “The Blind Men and the Elephant”.  American poet John Godfrey Saxe (1816-1887) based his poem on the fable that was told in India many years ago, demonstrating “how our sensory perceptions can lead to some serious misinterpretations; especially, when the investigations of the component parts of a whole, and their relations in making up the whole, are inadequate and lack coordination. The goal, then, for VI professionals is to provide instruction that helps students develop the concepts and skills necessary for making the “part-to-whole” connection. Barraga and Erin suggest using a task-analysis approach, presenting tactile information in small increments, within an orderly progression (page 78). 

Although both of the approaches in the chart on The Sequence of Tactile Skills Development stress the importance of following a developmental sequence, it appears that there is a considerable leap from Barraga & Erin’s third sensory stage, part-to-whole relationships, to their fourth stage, graphic representations. The Hierarchy in the left column breaks down the area of graphic representations into four smaller categories of skills, illustrating that VI professionals would benefit from using BOTH developmental sequences in their approach to instruction. For more information and activities on the four areas of graphic representations, see the previous TX SenseAbilities article on “The Development of Tactile Skills”.

Cognitive skills and sensory skills are two of the important components of tactile skills development; motor skills is the third component. It is important to remember that ALL of the skills are equally important. Following a sequential progression of instruction, drawing from information on both sides of the chart, should allow for a smoother integration of skills, a task with which many of our students struggle. The information on motor skills from previous newsletter articles is also recommended (“Early Tactile Learning” and “The Development of Tactile Skills), as is the webinar on tactile skills from the TSBVI Outreach Program. It is hoped that suggestions from all of the sources can help students become more proficient users of their tactile skills, reducing the evidence of splinter skills and decreasing some of the tactile issues observed in many struggling readers. The mastery of these skills is important for all tactile learners; they are crucial, however, for students who will become braille readers.  

References

Adkins, A., Sewell, D. & Cleveland, J. (2016, Fall/Winter). The Development of Tactile Skills. TX SenseAbilities.

Barraga, Natalie & Erin, Jane. (1992). Visual handicaps & learning. Austin, TX: Pro-Ed Publishers.

Cleveland, Jeri & Sewell, Debra. (2009, Summer). Early Tactile Learning. TX SenseAbilities.

Cleveland, Jeri, et al. (2017). Nemeth at a glance: A math resource, grade-level chart, and evaluation tool. Austin, TX: Texas School for the Blind and Visually Impaired.

ECC Webinar Series: Compensatory Skills – Tactile Skills. December 10, 2015.

http://library.tsbvi.edu/Play/12996

Saxe, John Godfrey. (1855). The Blind Men and the Elephant. Retrieved on January 31, 2017 from: http://wordinfo.info/unit/1/ip:20; http://www.constitution.org/col/blind_men.htm and http://www.constitution.org/col/blind_men.htmlearning.

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 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 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 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