Family Day (March 6, 2021)

It was a busy day for families attending the 2021 Texas Symposium on Deafblind Education. We welcomed families from six different countries form Canada all the way down to Argentina. There was a presentation by Jacqueline Izaguirre and Melanie Knapp, Texans on the board of NFADB, about advocacy and then a panel that included Vivecca Hartman, Wanda Schellenberg, and Suzanne Chen joining Melanie, Jacqueline, and Edgenie Bellah.  In a Zoom feat of virtual interaction, families moved into breakout rooms to share about issues and information on deafblind education and advocacy in their countries.  The day was capped off with the Mary O’Donnell Social hosted by NFADB (Diana Griffen, Vice President and Donia Shirley-Douglas, Board Member); Family Partners for the DeafBlind of Florida and the U.S. Virgin Islands Board (Katrina Michel, Doris Tellado, Jesefina Muro, Ana Browne); and Florida and Virgin Island DB collaborative (Pam Kissoondyal, Family Engagement Coordinator).

Map of the Americas showing where families are from who attended Family Day online.
Map of the Americas showing where families are from who attended Family Day online.

Families in Attendance

Family Day welcomed families from the following locations:

Argentina

Buenos Aires
Córdoba
Mendoz
Rosario

Brazil

Barreiras
Ilhabela
Ji-Paraná
Mato Grosso do Sul
Santo André
São Paulo
Salvador

Canada

Vancouver, BC

Chile

Santiago de Chile

Mexico

Aguascalientes
Ciudad de México
Comitán de Domínguez
Coyoacán
Cuernavaca
Guadalajara
Mérida
Mexico City
 

USA

Little Rock, AR
Downey, CA
Riverside, CA
Gainesville, FL
Saint Augustine, FL
Sarasota, FL
Downers Grove, IL
Glen Ellyn, IL
Overland Park, KS
Weymouth, MA
St. Louis, MO
Miles City, MT
Las Vegas, NV
Hastings-on-Hudson, NY
New York City, NY
Exton, PA
Irwin, PA
North Huntingdon, PA
Waymart, PA
Myrtle Beach, SC
Arlington, TX
Austin, TX
Dallas, TX
Fort Worth, TX
Harker Heights, TX
Houston, TX
Little Elm, TX
Lockhart, TX,
Round Rock, TX
Salado, TX
Sugar Land, TX
Wimberley, TX
Brattleboro, VT
Bellingham, WA
Burien, WA, USA
 
Welcome and What’s the Buzz?

The National Family Association for Deaf-Blind (NFADB), Deaf-Blind Multihandicapped Association of Texas, and Texas Chargers, Inc. started the day with a great big Texas hello and an invitation to learn more about these organizations to consider becoming a member. DBMAT and Texas Chargers, affiliates of NFADB shared information about their organizations. There are currently 11 affiliate organizations across the United States and US territories in the NFADB Affiliate Network.

Edgenie Bellah gave an official welcome to Djenne-Amal Morris, the new family engagement coordinator at Texas School for the School Outreach Center.

Sarah Karmacharya with HHSC Blind Children’s Program in Texas shared information about that agencies services for children 0-21 with a visual impairment. They provide case management, direct skills training, and parent education. They can make purchase to help each child receive services to meet individual goals. If you are a Texas family contact them at BlindChildrensProgram@hhs.texas.gov

Family Advocacy Skills: Taking It to the Next Level

Melanie Knapp, and Jacqueline Izaguirre, NFADB Board Members

Jacqueline and Melanie Policy, Information, and Education (PIE) Committee members with NFADB, shared information about types of advocacy, types, why, atrribues, etiquette. Advocacy means telling your story to impact the work of government and policy officials to support or benefit others. Advocacy is different from lobbying. Advocacy includes policy research, organizing the community, spending “a day on the hill”, etc. Lobbying relates to asking legislators to express a view about specific legislation and regulation. 501 (c) (3) can maintain insubstantial part of their activities in lobbying if they observe the expenditure cap.

Types of Advocacy

      • Self-Advocacy
      • Individual / Parent Adovocacy
      • Group Advocacy
      • Systems Advocacy

Qualified Personnel for students who are deafblind is an example of systems advocacy.

Jacqueline and Melanie shared brief stories about their children Patsy and Christian. Their children are their reason for advocating.

Successful advocates are approachable, honest, respectful, organized, informed, committed, and persistent.

Basic Etiquette of Advocacy

      • Be honest (don’t pretend to know when you don’t know)
      • Polite & respectful
      • Introduce yourself
      • Know who you are talking to (do some background work on who they are and what they are interested in – find common ground)
      • Understand the rules
      • Stay positive (don’t argue)
      • Stay focused
      • Follow-through (provide additional information, be on time, etc.)
      • Follow-up (email, phone call)
      • Be persistent (they expect to hear from you more than once)

Historically we have had strong advocates for the field and support in national policies and funding. That is no longer the case.

Today issues are not being addressed. PIE Committee has been addressed creating Policy Papers on TDB, Interveners and Qualified Personnel. Advocates are desperately needed for deafblind. NFADB Family Advocacy Project is set to train family members and organizations to advocate for deafblind issues. Both family member and organizations who want to be part of this project have specific criteria they must meet, including the time and ability to attend some limited face-to-face meetings, have technology skills, and be involved in state and family boards.

Fall of 2021 training will begin leading up to February 2022 “A Day on the Hill”. You can join NFADB as an individual or organization.  Member benefits include be having your voice be heard, support so you are not alone, training opportunities, information and resources, and networking opportunities. You can join NFADB or become a committee member or an affiliate, you can find the application on the www.nfadb.org website.

Panel Discussion with Melanie Knapp and Jacqueline Izaguirre facilitated by Edgenie Bellah

Vivecca Hartman, Wanda Schellenberg, and Suzanne Chen joined Melanie, Jacqueline, and Edgenie following the break.    

Vivecca Hartman: My reason for advocacy is my son, Christopher. President of DBMAT that supports families and the professionals who work with them. When my son was newly entering school, she believed he would get FAPE, but that is not always in place at first. It is important to partner with your school system, and you need to be an advocate.   

Suzanne Chen: It is 5 PM in NY. Parker is 13 and has CHARGE and is smater, determine and has lots to prove. I advocated for appropriate therapies, intervener, and have educated council members, senators and others. I am the of NFADB . My reason why, 13 years ago when Parker was in the NICU there were all these conversations about what he would need (therapies, surgeries, etc.) and all I could see was this beautiful child.

I love something Sheri Stanger said one time, “An educated parent is a force to reckon with!”

Other quotes:

“Advocate like a mother.”

“If you are assigned this mountain show that you are force to move it. “

Wanda Schullenberg: I live in Vancouver and have 3 children. My youngest is a daughter who has 5 p-minus syndrome that includes deafblindness. She is very petite, social, and loveable. Advocacy did not come naturally to me; I needed help to get there. I learned about 4 weeks before she was born that she had this syndrome, and I was frankly afraid to meet her. But my husband spoke the first words of advocacy on her behalf and he said “This is a baby we can love.” I knew we needed not to do this on our own and I sought out others to support us in these efforts. The CDBA is one of our main sources of support. CDBA is over 40 years old and formed by parents. This group administers intervenor services, established independent housing, and produces a news magazine. I think a lot about “small-a” advocacy and know that we have to be aware of opportunities to advocate. We do need to educate others about people in general with diverse needs but especially about people with deafblindness. I have learned not to be put off by people who don’t know how to enter into your world. I have to make sure I take advantage of that moment to educate them about deafblindness. Sometimes they just want to express their own vulnerablility and seeing her makes them feel comfortable sharing.

One of my favorite quotes:

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.

Margarget Meade

What are some tips you can share about advocacy?

Melanie: now we have just hosted the 13th annual Christian Knapp Memorial Golf Tournament to raise money for DBMAT, so I have become a fund-raiser.

Vivecca: On a personal level my tip is: Get to know your school board and school district. Call and show up to visit your special education director; bring him some cookies. Put positives into the piggy bank so when you need it in the future you can draw on it. Reach out to Texas Deafblind Outreach and DBMAT to help you with advise and support.

Alone you can seem like a crazy person but together as a group YOU ARE A MOVEMENT!!!! – Vivecca Hartman

We go in tee shirts with the DBMAT logo, have packets that are organized you can share. Be approachable and be willing to join in with others. Reach for the heart with your own stories and relate as a parents. Pictures, pictures, pictures start a story and a connection. Office Depot non-profit accounts are great for saving money for preparing materials. Show up in your tee shirst and you look like a movement.

Suzanne: Remember that you are worthy; your voice and your child matter. Tell your story. Don’t be afraid. Your actions will help the families that follow. Be present and attentive. Sit on any kind of committees to learn more about how to tell your story and be part of a group. Start small and work your way up. Join the parent organization. Collect information from families you meet and share information about your organization. Make it personal – bring a picture, bring coffee and cookies, remind them it is a meeting for my son. Connect with others families, professionals and others. Never burn bridges. I still keep in touch with the NICU staff and others and invited them to his 10th birthday party. These professionals are on the journey with me.

Wanda Schullenberg: Educate yourself about deafblindness, strategies and techniques unique to deafblindness. We were lucky to have Linda Mamer as our Deafblind Consultant and she followed my daughter throughout the years. She would encourage me to be a part of workshops and conferences for professionals. I am always interested in courses. We lack trained professionals to work with our children when they are out of school. When my daughter left school, I worked to create a booklet about her (My Booklet BC).It is a template for answering questions in the voice of the child. Page example: This is important to me – this is important for me. This was helpful in introducing new people into our lives and her life. Find a person or people who can continue to collaborate with you in supporting your child.

If you could push a button and makes things change what would those be?

Recognize interveners. Educate all the educators and medical staff in NY about deafblindness so we don’t have to do it every year.

Formal education for interveners that would be recognized with a degree across North and South America.

Alone we can do so little; together we can do so much. - Helen Keller
Alone we can do so little; together we can do so much. – Helen Keller

 

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.

Quote by Margarget Meade

 

I love something Sheri Stanger said one time, “An educated parent is a force to reckon with!”

Other quotes:

“Advocate like a mother.”

“If you are assigned this mountain show that you are force to move it. “

Comments from Suzanne Chen

Alone you can seem like a crazy person but together as a group YOU ARE A MOVEMENT!!!!

Comment from Vivecca Hartman

Families Uniting Internationally

Families met in small groups and notetakers captured their thoughts through an app called Padlet. Below are some of the comments from these small group breakouts.

Magic button wishes

If you could push a magic button and make a wish come true instantly, what would you wish for?

      • DBMD waiver spots
      • Interveners
      • education reform
      • presuming competence in all children
      • Community services/Educational fund that FOLLOWS wherever my child goes.
      • More broad access to interveners and teachers of the DB.
      • Would like adult service agencies to work with education agencies and families so the transition to adult life isn’t such an ordeal.
      • More involvement from others in the organizations! We welcome new parents and caregivers to volunteer!
      • Interveners available for families with older individuals.
      • Desde Argentina, agradezco la posibilidad de participar y poder escucharlas es un placer.
      • access to qualified teachers and staff for all Deaf, Hard of Hearing or DeafBlind child.
      • Ter um livro de o que esperar de uma pessoa com Surdocegueira seria de grande ajuda
      • Reconhecimento nacional
      • equity
      • numa sociedade melhor, sem preconceito
      • eu daria para Janine o poder de ouvir
      • Eu daria o poder de se mover a Micaela
      • Eu daria para camila o poder de enxergar
      • Eu daria o poder de enxergar para Gabi

Advocacy Efforts

What are some of the advocacy efforts you have been involved in?

      • Cogswell Macy Act
      • Lead-K
      • Active parent participation in the IEP
      • Para defender el derecho a la educación de mi hijo y otras 51 familias
      • Abrapascem em Brasil por saúde
      • He participado en propugnacion con mi hija para apoyo de un tratamiento que necesitaba
      • My son’s education.
      • More waiver slots for TX’s DBMD Waiver
      • Support Service Providers for DeafBlind Texans
      • Representing families of deaf/deafblind and speaking to senators and assemblymen about deaf and deafblind issues.
      • Education and getting my daughter the needed Dyslexia qualifications for services
      • Interveners from birth and raises for interveners
      • Reconhecimento da surdocegueira como espectro… assim podemos potencializar sim.
      • Escrevi uma carta ao Secretário de Educação do meu Estado, solicitando atendimento especializado ao Surdocego e consegui.
      • yes, I have done it for several years for visualize the needs and rights of blind and deaf people, not only for my son
      • Membro de Conselho Municipal dos Direitos das Pessoas com Deficiência

General

General throughts to pass along:

      • “Being a parent advocate is a GOOD thing”- Vivecca Hartman
      • “Advocate like a mother”- Suzanne Chen
      • “This is certainly a baby we can love”- Wanda Schellenberg’s husband
      • “Use every moment as a teachable moment!”- Suzanne Chen
      • “Reach their hearts and minds through a story”- Vivecca Hartman
      • “Don’t be afraid to be the first”- Suzanne Chen
      • I liked that parents and professionals have been together in the panel presentations.
      • You cannot start preparing for transition early enough.

What have we learned?

What have we learned so far at the Symposium?

 
      • Every day we learn something new
      • To learn and share it with other parents that are starting the journey.
      • Licenciada en pedagogía – Laura V
      • The experiences from other parents have inspired me
      • Tapping into advocacy training and bring into our state – through an affiliate or the SDBP
      • This is my first time in a symposium like this. I cannot believe how many people are involved in this field.
      • me ha servido para saber sobre el desarrollo de mi hija
      • Aprendizaje para hacer valoración para mi hija
      • Miss being in the same room with individuals who made a difference in my child’s life!
      • me ha enseñado que mi hija no iene limite , que los limites se lospongo yo, que debo seguir adelante por ella.
      • This symposium has taught me that we are the ones who limit our children.
      • Confirmation in listening to Paul Hart – lead by following, let the child be the curriculum, simple but so profound – and often missed and not taken seriously – love to be immersed in these philosophies of allowing our child to take the lead.
      • me ayudo a saber que eeuu hay escuelas que nos pueden ayudar.
      • Alma C. 3 anos DB child, El simpo me ha enseñado que mi hija no tiene límite, y como papas puedes hacer mucho para ellos. Primer nina en méxico menos de 2 años impantada con cochlear
      • me ayudo a saber que no estamos solas
      • tienes una familia de la sordoceguera que siempre te va apoyar
      • Brought back to me why I began advocacy – of educators thinking my son needs to fit into the known educational programming for the masses.
      • me brindaron estrategias para abrirle el mundo a mi hija
      • I have learned new information and strategies how I can open the world to my daughter.
      • Ebely M. Mexico, 5 yrs, Me ha gustado por la informacion extensa que no fácilmente se obtiene.
      • Teachers of the DB – needs to be everywhere! As well as Interveners!
      • he aprendido bastante, lo mas importante fue escuchar educacion es poder. Si tu no estas educado no puedes conseguir lo que necesita tu hijo
      • Kenia S, hija de 15 años CHARGE mexicana de GDL, he aprendido bastante y algo que me llevo “Educacion es Poder” de una madre participantes. Hay bastante información que tenemos que buscar y aprender.
      • Continued inspiration to advocate for my child.
      • This symposium is an opportunity continue learning
      • es maravillosa esta oportunidad de educacion continua, me ayuda a usar mas estrategias con mi hija, es maravilloso poder compartirla con otros padres
      • Josefina G. maravilloso tener estas oportunidades para tener poder y usar estrategias para mi hija, tener la oportunidad de también compartir con otros padres. te ilumina a seguir un camino y es mucha información con estrategias para aplicar con familia.
      • Loved the presentation of Jude Nicolas
      • Beatriz, Morelos hijo de 10 años, Jude Nicholas, presentation me cambio toda la perspectiva y lo vamos a aprovechar.
      • me maravillo la presentacion del miercoles y me recordo lo importante del tacto
      • cada vez , es mas informacion a nuevas familias, eso es maravilloso
      • Myran Medina, dos hijos uno DB, yo soy la persona que lleva a cabo el curso. segundo piloto en planes. Yo he atendido varias veces y es muy enriquecedor, informacion invaluable. hay que tomar todo lo que se pueda.
      • Parent voice is so needed!
      • lo importante es lo que dijieron los profesionales, como podemos apoyarnos unas a otras, sacarnos los miedos y trabajar juntas. las animo a seguir a delante y a seguir trabajando juntas
      • Everyone (families) has a time – this is a journey of becoming an advocate.
      • hacer una comunidad grande , hoy tenemos la posibilidad por medio de la tecnologia.
      • una comunidad de apoyos entre familias
      • Renewed energy regarding advocacy.
      • tenemos un hijo que nos une, que me guio hasta aqui, es un baile que debemos bailar entre familias y profesionales
      • Family perspective is so helpful. Excited of what TX has done with TODB.
      • Advocacy is a journey – from keeping my child alive and then with the school – diverse needs require different methods of advocacy dependent on the need.
      • Strength in numbers – validate parents, knowing that it is exhausting at times, relying on others who have the energy.
      • Empezar por nosotros para poder ensenarles a los demas
      • Dr. Cameron sharing the brain and how experiences effect pathways in the brain. I found this validating.
      • Processing time – wait time is very important.
      • The brain – we’re learning so much all the time, and there is still so much we don’t know. I’m so grateful we know that the brain has so much plasticity, and my child can be a lifelong learner.
      • Hay que fortalecer a las familias
      • The speakers have explained the “why” about why things I do work, and it’s really validating.
      • “Let the child lead you” has been powerful for me. I get so much information by observing my son.
      • La tecnologia nos ayuda a acercanos como comunidad
      • creer en nuestros hijos, que ellos pueden
      • defesa de direitos, tema de hj
      • The history of deafblind education and how we got interveners. Things are different now, and are continuing to change.
      • Ver a nuestros hijos como personas, como seres humanos, no como una discapacidad.
      • Gostei muito dos temas tratados durante a semana. Os cérebros são tão perfeitos que ainda que faltem dois sentidos, se pode aprender.
      • aprendí a verlo como un ser humano, no como una discapacidad, hay que darle respeto que el se merece.
      • Mi hijo es un joven de 20 anos no es un bebe.
      • Hay que darles la dignidad que ellos se merecen
      • It’s been a reminder into why I do this.
      • The concept of interveners…I need to look into that. I hadn’t heard of an intervener before.
      • Jude Nicolas’s description of no tactile receptors for wet but concept of wet is combination of receptors. Concepts can be identified through other pathways in the same way that we perceive things as being wet
      • Dr. Cameron and Dr. Nicolas’s description of how the brain develops. The fact that hearing other people’s stories can serve as a recharge center.
      • The idea of a stress basket. How the levels of stress can grow and overflow out of the basket. I can share the idea of a stress basket when talking to others about my child.
      • Seeing so many families who can lead and connect with each other
      • Paul Hart “Our curriculum is called the child”
      • When I think back to my first symposium I realized that I wasn’t alone. There were other people who were experiencing what I was and I realized that I wanted to be one of those people to lead in the future
      • The presentation on advocacy was refreshing. It was helpful to know that you’re not alone.
      • Dr. Paul Hart’s assertion that everyone’s education should be tailored to them. That’s especially true for children who are deafblind and I’m so grateful that my child has that opportunity.
      • aprendi que yo inteantaba enseñarle lo que se me ocurria en el momento, pero el primer dia escuche algo impotante , sobre la repeticion de la experiencias ayuda a su memoria
      • Entre mas experiencias tenga, mas repeticiones, mas va a aprender.
      • nunca habia escuchado cuando la dra hablaba que aunque mi hijo fuera sordo debia hablarle igual. cuando era niño lo invitabamos a jugar con sonido, pero no le hablabamos. .
      • otro tema que me marco fue el tema del stress mi esposa estuvo con mucho stress.
      • por mas dificil que haya sido lavida de cada uno en nuestros paises , hemos aprendido que lo mas importante es la comunicación y el amor.; simplemente hay que trabajar con nuestros hijos.

Mary O’Donnell Social

Hosted by NFADB (Diana Griffen, Vice President and Donia Shirley-Douglas, Board Member); Family Partners for the DeafBlind of Florida and the U.S. Virgin Islands Board (Katrina Michel, Doris Tellado, Jesefina Muro, Ana Browne); and Florida and Virgin Island DB collaborative (Pam Kissoondyal, Family Engagement Coordinator)

To close out Family Day, families had the pleasure of participating in this year’s Mary O’Donnell Family Social. This has been the highlight of every NFADB gathering with this year being no exception. During this time, families were able to play fun games, win “Zoomprizes” (think door prizes virtually). The time together ended with a special Story Time with the whole family. The smiles on the young peoples’ faces lit up the Zoom screens as everyone enjoyed the performance by Gwyn McCormack.