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A Publication about Visual Impairments and Deafblindness for Families and Professionals

TX SenseAbilities Spring/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! 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!

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 at http://www.touchbasecenter.org.

A picture of Tania sitting on the floor touching three therapy dogsA picture of Christopher and his intervener enjoying outdoor play equipmentA picture of Tania and her intervener working with clay on a potter's wheel