Posts Tagged ‘early intervention’

How a Deaf Mentor Helped Our Family

July 25, 2018

We brought our boys home from Russia when they were 15 months old.  When they were 22 months old, Mark was diagnosed with severe to profound hearing loss.  He was fitted with hearing aids a month later.  Mark is now a teenager.  I remember feeling completely overwhelmed. We had so many questions; will Mark learn to speak? Will he use sign language? How will he hear the phone? How will we teach him to read?  We had so many questions; And, so few answers.

 

After he was diagnosed, we started early intervention with bi-weekly speech lessons.  Each week we went to speech and we had little progress.  Because we believe that language is vital for toddlers, we began to inquire about sign language. No one could recommend a class or teacher for us. This process continued for about six months with no success and we all became more and more frustrated, especially Mark. No one was able to help us.

 

One day, at a local grocery store, a woman asked me about the cord holding Mark’s hearing aids on.  We began to talk and she informed me her son (who was not hearing impaired) used sign language to communicate because he had no spoken language.  I asked her how/where/who she used to learn sign language.  She gave me a name, Karen, and told me she was a “deaf mentor” and she said we should ask if we could get Karen’s services through early intervention.  We called our early intervention coordinator the next day.

 

Karen came to our house within days.   As it turns out, she is deaf.  Her husband is deaf. Her children are deaf. Finally, someone who could help us.  Someone who was able to teach us how to teach our child to be a successful person in a hearing world.   She came weekly to our home.  She came at all different times and began to teach us sign language. Her philosophy is to get language (any type-spoken or signed) into a child as soon as possible. Without language, children fall behind in every aspect of life.

 

She came when the boys ate lunch. She signed hot dogs, more, milk, cookie, green bean.  Simple words that helped language make sense to Mark.  She came before nap time and read books with us. She taught us the words to “Brown Bear Brown Bear” and “Polar Bear Polar Bear” and other board book favorites.  She would come after naps and play music and sign the words to songs and play instruments and help Mark make the vital connections between things and language.

 

But, she did more than give Mark language. She helped our entire family. She told us about door bells that light up when the bell rings so people who are deaf/hard of hearing know someone is at the door. She told us about alarm clocks that shake instead of buzz.  She taught our family what it is like to live without being able to hear. Honestly, we had never thought of any of this, after all, we can hear.  It is amazing the things we take for granted.

 

In the year that followed, the biggest question our family faced was what type of communication we were going to use.  We were not sure if we were going to use sign language, pursue an oral education, or try to find a total communication school. This decision is hard and it caused emotional grief for our family.  As usual, Karen was there for us when we were questioning what to do for Mark.  The best advice anyone has given me came from her.  She said, “Remember, nothing is permanent. Make a choice, do it for six months and if it doesn’t work, change strategies and try something different.” We still live by that advice.

We had never heard of a deaf mentor before we met Karen and now we tell everyone we meet who has a deaf or hard of hearing child. Karen clued us in on what deaf and hard of hearing people face on a daily basis. Karen believes nothing is impossible for deaf and hard of hearing people and she helped our family realize that too.

Jessica Bianco

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The Cornerstone of Parent Choice

April 2, 2018
Most recently, we have been asked to clarify our position on parent choice. Supporting parents in making their own informed choices for the child they know best is central to everything we do.
 
The Cornerstone of Parent Choice
By Karen Putz,
Co-Director of Deaf/Hard of Hearing Infusion
Hands & Voices
 
In my very first job right out of college, I informally took on the role of being a mentor to a family with a toddler who was deaf. I had no formal training, other than my own experience of growing up hard of hearing, becoming deaf as a teen, and learning American Sign Language shortly after. That first experience of working with families was so enjoyable for both the family and for me that I began to get calls from more and more families. I happily provided mentoring support, even though my primary job was structured toward independent living for teens and adults.
 
Then I got a call that would change my life and eventually lead me formally down the path of parent support…
 
A mom called to ask for support services and resources. She had just found out her six-month old daughter was deaf. I debated whether to take the appointment, for I had just turned in my resignation letter to stay home with my own newborn baby. Since the family lived near my home, I took the appointment.
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I ended up mentoring that family on my own out of sheer passion for the work. We held sign classes in her home and the neighbors joined in. We mentored other families together. In an ironic twist, this mom was also there to support me when my toddler became profoundly deaf two years later. It was that moment that my journey became personal–now I was the mom of a deaf kid. Everything shifted in the way I provided support from that point on, because I was now walking down the parenting path with my own experiences. My husband and I were now facing the process of choices and decisions we had to make for our child (and the two that followed).
 
And that changed everything.
 
As a parent, we are responsible for all kinds of decisions for our children. My husband and I soon learned that NOT making a decision was a decision in itself–and we had to own the consequences of that path as well.
 
In 2004, I stumbled upon Hands & Voices while putting together a website for parents in Illinois. The minute I read the description of the organization, I knew it was a fit for our family.
 
Who are we? We are parents of ASL signers, cued speech users…. parents of kids with cochlear implants or total communicators… we are people who have common interests connected through the community of deafness. Hands & Voices is a safe place to explore options, get unemotional support (although we can be emotional about it!), learn from one another and share what we have in common. We value diversity and honor the role of parents and family as the single greatest factor in raising a WASK (our favorite acronym: Well-Adjusted Successful Kid).
 
“There is room in the community of deafness for an organization like Hands & Voices, and in fact, I think parents, and even many professionals, have been crying out for a group like this,” says Leeanne Seaver, Board member. “Somehow parents connecting to other parents provides an element of credibility; there’s a level of ‘knowing & feeling’ that only a parent experiences. And parents, especially parents of babies newly identified with deafness or hearing loss, need a way to connect like this without being wary of a sponsoring agenda from a service provider.”
 
Hands & Voices is a nonprofit, parent-driven organization dedicated to supporting families of children who are deaf or hard of hearing. We are non-biased about communication methodologies and believe that families can make the best choices for their child if they have access to good information and support.
 
Everything about the organization matched what I felt was most needed. Parent choice. Support for diverse communication options. Coming together for common causes. Support by parents for parents on the parenting journey.
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It is now many years later; my kids are now young adults. I’ve been a board member, a founder of a state Hands & Voices chapter (along with the parent I previously mentored), and I am now working as staff. Through the years, we’ve remained steadfast in our mission and vision to provide support to parents on the journey. We work with a diverse group of parents from all walks of life and all different stages of their journey.
 
From time to time, we are asked for our position on a variety of topics. Most recently, we have been asked to clarify our position on parent choice. Supporting parents in making their own informed choices for the child they know best is central to everything we do. When it comes to the parent’s right to choose, we stand firmly behind this concept:
 
Parents not only have the right to choose language and communication modality for their child who is deaf or hard of hearing, they have the ethical, legal and moral obligation to do so. Furthermore, the research proves that the single greatest indicator of a DHH child’s eventual success—regardless of which mode or method of communication is used—is the meaningful involvement of his or her parents. The goal is to make that involvement authentic, effective and informed by the wisdom that so many have to share from direct experience…parent-to-parent, deaf or hard of hearing adult to parent, and professional to parent.
 
putz kids
The parenting journey is filled with twists and turns. As a mom of three kids, I’ve experienced this firsthand. As a Deaf Mentor in early intervention, I’ve had the honor of being a part of a family’s journey often from the beginning. As a staff person with Hands & Voices, I’ve had the opportunity to work with a variety of families negotiating this journey around the world. I’ve seen it time and time again–even in the midst of difficult situations and trying times–there’s so much more that unites us than divides us. We must continue to focus on the common goal: building an informed community surrounding parents so they can nurture the seed of potential in every child.
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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.

hands and voices babies

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

 

marion downs 2

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.

shut up and live

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

marion sara yoel

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

russia trip

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.

savannah 1

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.

russia trip 2

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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