Posts Tagged ‘early intervention’

You Can’t Possibly Provide Support Without Bias

July 24, 2017

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I was wearing my “What’s your sign? ASL” t-shirt one day when a friend pointed it out and asked, “Isn’t that showing your bias when you display your communication choice? I thought Hands and Voices was ‘neutral’ when it comes to favoring communication choices?”

There are often a lot of misunderstandings about supporting families with deaf and hard of hearing children without a bias toward communication choices. “You can’t possibly provide support without bias,” people often challenge us at Hands & Voices.  I frequently see the word “neutral” associated with the idea of supporting families. In fact, I wrote about it here: Neutral is a Shade of Color, Not an Organization.

If anything, the opposite is true. The people who become a part of Hands & Voices are pretty passionate about a lot of things when it comes to supporting families with children who are D/deaf and hard of hearing. When you truly operate without bias–you are able to join a variety of organizations, mingle with people from every communication experience, be comfortable with every combination of choice, and open-minded about the experience of raising D/deaf and hard of hearing kids. No one blinks twice when you attend an event centered around a certain communication philosophy or technology. Because at Hands & Voices, we know that the more you learn, and the more you experience, and the more you open your mind–the more you can provide to families on the parenting journey.

Here’s more on Supporting Families without Bias.

Yes, you CAN celebrate your own experience, choices, and journey. You CAN share your expertise and experience in ways that do not manipulate another person’s journey. You CAN mentor/guide/educate without the intent to manipulate, belittle, or manage a family’s experience.

I have often said, “My journey does not define your journey.” Families can take what they want and need from my experience and frame it into ways that helps their own experience. There’s quite a difference in saying, “Let’s explore ways you can provide communication access for your child,” versus “I think you should provide your child with _________.”

You can take the journey “with” the family, not “for” the family.

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In my early days of being a Deaf Mentor in early intervention, I had families who opted for cochlear implants for their child. They asked me questions that I didn’t have answers to–I had hearing aids. So we learned together. I brought in others who could answer the families’ questions. I went above and beyond to learn everything I could. I went to the hospitals and provided support before and after surgery. That’s just one example of how you can provide support along the journey–even when the family’s experience is quite different from yours.

When people meet me, they often make assumptions based on my expression of communication. They usually throw me in one communication camp or other, based on what they see/hear at the time. What saddens me is that I come across this communication marginalization almost on a daily basis. Through my work with families and young deaf and hard of hearing adults I see this happening all the time: separation, judgment, and segmentation based on communication skills and choices. I’ve seen families torn to shreds on the web about the choices they make for their D/deaf or hard of hearing baby/child.

It breaks my heart.

I believe in the mission and the purpose of Hands & Voices:

Hands & Voices is dedicated to supporting families with children who are Deaf or Hard of Hearing without a bias around communication modes or methodology. We’re a parent-driven, non-profit organization providing families with the resources, networks, and information they need to improve communication access and educational outcomes for their children. Our outreach activities, parent/professional collaboration, and advocacy efforts are focused on enabling Deaf and Hard-of-Hearing children to reach their highest potential.

I’ve said this before, and I share it here again:

At any given time, Hands & Voices is whoever is a part of the organization. Families and individuals are not the sum of their communication experience and we don’t identify our Hands & Voices organization merely by those choices. We do our best to include everyone who wants to be a part of the movement of providing support without bias to families. Whenever we stumble along the process, we try harder yet again. The bottom line is to support families along the journey of raising deaf and hard of hearing children. We all have the same goal in mind: well-adjusted, successful kids.

As for being “neutral,” to me, that’s a shade of color, not an organization. What I love seeing instead is an organization that is passionate, vibrant, and colorful– an organization which is made up of amazing, diverse families, professionals, and individuals who celebrate the many different ways there are of being Deaf/deaf and hard of hearing.

Now that’s Hands & Voices. And I invite you to be a part of it.

www.handsandvoices.org 

Karen Putz

 

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The Legendary Marion Downs

November 19, 2014

 

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It is with sadness but celebration, that we hear of the passing of a true pioneer and the Grand Madame of pediatric audiology, Marion Downs. As she lived her life, she passed away with dignity and grace on November 13, 2014. At 100 years of age, she leaves a legacy that touches all of us; parents for her perseverance in the implementation of newborn hearing screening and advocacy for parent choice; children who have better outcomes and opportunities as a result of early diagnosis and intervention; professionals in audiology, medicine and deaf education who have had the benefit of her teaching, influence, and mentorship; and mankind for a woman who taught us all to “Shut Up and Live” with meaning, laughter, and pride.

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I was fortunate to have Marion as a teacher when I was a graduate student and as a mentor throughout my career.  As a parent, she helped me gain confidence in my own advocacy abilities for my daughter and for her education.

Marion will remain a role model and guiding light as we continue our advocacy work on behalf of parents and children who are deaf and hard of hearing. Her influence changed our world and inspired many. May her legacy be not only the grace, kindness, and patience with which she treated people, but also her optimism, determination, and fearlessness in living her life.

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Cheryl Johnson, Past President, Hands & Voices

 

 

If you didn’t get a chance to meet her, she was a spitfire of a lady: grounded, interested in all of life, and just sparkling with energy and drive. She packed several lives into her century: skydiving and triathlons, research and authorship included. I got such a kick out of her story about why she chose audiology: that enrollment line in college was the shortest! We are glad you picked “our” line, Marion, but I do have the feeling that any field of study would have benefited from your closer look at how things are and how they might be. At Hands & Voices, we truly appreciate her respect and encouragement of families to truly have a place at the table in designing systems for hearing screening and follow up. Her friend and co-worker Dr. Jerry Northern introduced her at her 100th birthday party last January. He remembered something she often quoted: ‘Live for today…plan for tomorrow…but let’s party tonight!’” Work hard and play hard – it’s a good motto.

Sara Kennedy, Executive Director of Colorado Hands & Voices

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I was fortunate to live in Colorado and be a part of the Marion Downs National Center as the parent consultant starting in 1996.  It was there that I began to get to know Marion.  My favorite memories of Marion include being in committee meetings with her when a group of us would be discussing a complex issue or situation, and begin to commiserate on why something couldn’t get down and/or why the system couldn’t change.  At some point in the meeting, Marion would speak up and say,  “Well, let’s just get it done”.  And that was it.  She never looked at why something couldn’t happen, but just to keep moving forward and MAKE things happen on behalf of families and kids who are Deaf/Hard of Hearing. I always thought Marion was just one of those ‘lucky’ older individuals that didn’t have to deal with what others had to deal with in old age.  She was just one of the lucky ones for whom age didn’t really matter.  It wasn’t until I read her book,  “Shut Up and Live” that I realized that Marion was human after all, that she was subject to the same ailments and challenges of growing older – but there was a difference!  In spite of those things, she kept busy, active, moving forward, jumping out of airplanes, contributing to her lifelong commitment in her career to improve the lives of children.  The world was a better place with her in it!  She will be missed.

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Janet Des Georges

About Marion Downs

Marion Downs Interview

In the Minds of Champions–Marion Downs

Marion Down’s 100th Birthday

Million Dollar Gift for Marion Downs Center

Marion Downs Passes Away

 

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The U.S./Russian Partnership: Supporting Families with Deaf and Hard of Hearing Children

November 3, 2014

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In July, 2014, Hands & Voices (H&V) was awarded a grant through the US-Russia Peer-to-Peer Program Grant administered through the U.S. Embassy. With over 240 applicants, Hands & Voices was one of only 26 selected. The grant was written in partnership with the St. Petersburg Early Intervention Institute (EII).

The goals of this project seek to expand the knowledge and experiences of parents of children who are deaf and hard of hearing as well as the professionals who support them, and to share cultural perspectives and recommended practices in early intervention and parent to parent support–with the aim of improving services and child outcomes. The Partnership is based upon cultivating a parent to parent organizational system that provides emotional support, information dissemination, and modeling. The partnership is focusing on three distinct activities: translation of materials, direct exchange of knowledge and fostering of relationships through on-site visitations, and online exchange of knowledge and experiences.

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The study visit to the U.S. by the Russian parents and professionals included an opportunity to attend the Hands & Voices Leadership Conference in Savannah, Georgia from September 19-21st, 2014. An additional day of exchange to forge partnerships between the two groups was included immediately following the conference. While parents have the most expertise about the reality of raising a child who is deaf or hard of hearing, they are rarely given the opportunity to be trained to be meaningful participants in the systems which serve them, especially regarding the unique language, communication, emotional, and educational considerations associated with hearing loss. The 11th Annual H&V Leadership Conference is a two-day training that enables parents and professionals to increase their advocacy skills and understanding of the systems they seek to improve. Professionals and deaf/hard of hearing community members also attend to learn about parent-perspectives on the systems they represent. This conference was able to create a platform of training from which the Russian partners participated, interacted, and learned from the H&V leadership attending. They were also contributors and role models for the U.S. and Canadian participants in the work that this group is doing in Russia.

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The participants from the U.S. then traveled to St. Petersburg to attend and present at the “Communication, Sound, and Light” conference, October 20th – 23rd, 2014, at the Pavlov Institute of Physiology, Russian Academy of Sciences. This Institute is dedicated to the memory of Ludmilla Chistovich, Valerij Kozhevnikov and Andrey Popov. The laboratories of Ludmilla Chistovich and Valerij Kozhevnikov specialized in speech perception. Beginning in 1960,they worked in close cooperation with researchers from the U.S. (e.g. MIT), Sweden (e.g., Kungliga Tekniska Högskolan, known as KTH or the Royal Institute of Technology), France, Germany, Japan, and the U.K. These connections and friendship helped to start early intervention programs in Leningrad/ St. Petersburg in the late 1980’s to early 1990’s.

A parent workshop was held in St. Petersburg with over 35 parents attending. The U.S. team shared insights into the parenting journey and the building blocks of establishing parent-to-parent support. Karen Putz, one of the members of the US Team, also was able to enjoy a dinner out with several deaf moms and an evening of performances at the St. Petersburg Deaf Cultural Center – bridging and building relationships among other Deaf adults. She discovered it was rather easy to pick up Russian signs and vice versa.

As the team shared a dinner together on the last night in St. Peterburg, spirits were high, and you could feel the good energy at the table. After the Russian team had been to the U.S., and now our U.S. team had just spent a week in St. Petersburg – we were familiar with one another and enjoyed sharing our hopes and dreams for our children who are Deaf/HH. We were celebrating our week of hard work and what was to come.

The waiter approached the table with a bottle of vodka. It had been sent over by four gentlemen who were sitting nearby. One of the men approached us and made this speech: “I can see that your group is working well together. I am so moved by this exchange and the feeling that you are working together between U.S. and Russia. I want you to remember when you go home, that the Russian people are very interested in collaborating with U.S. Do not believe everything you hear on TV. I honor and toast to what is happening at this table right now.“

He was very emotional as he gave this speech, and those of us at the table felt the impact of what this project was producing–not just for our organizations and for our mission of improving the lives of Deaf children and their families–but that the opportunity for us to work together is building bridges beyond this grant. That we as human beings must bridge the gaps wherever we go – to stay focused on our common themes and common experiences.

The Russian – American exchange of families who have children who are deaf and hard of hearing will continue their collaboration by on-going peer-to-peer discussions and support throughout the partnership via live webinars connecting families during the partnership.

By Janet DesGeorges, Molly Martzke, and Karen Putz

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