Archive for November 26, 2014
We have a day for giving thanks. We have two days for getting deals. Now, we have #GivingTuesday, a global day dedicated to giving back.
How do I #UNselfie?
3. Post it to Instagram, Facebook and/or Twitter and share with friends!
TELL everyone you can about how you are giving. Join us and be a part of a global celebration of a new tradition of generosity.
ASK people to share their support on Facebook, Twitter, and Instagram through status updates, posts, or other creative content. A few ideas include giving people a way to tell others about their donations on Facebook, or asking fans to change their profile pictures on Facebook and Instagram to your campaign image.
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.
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.
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
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.
Janet Des Georges
I couldn’t shake the feeling there was something “wrong” with my daughter throughout my entire pregnancy. The ultrasounds and tests came back normal, but I still felt a nagging dread. In my last trimester, I had repeated bouts of preterm labor that lasted hours and hours and I was certain she just needed to come out…that she would be much safer in the world than in my womb. So when Ruby was born and repeatedly failed the newborn hearing screen, I was actually relieved. Hearing loss? That was it? We could handle that. She was healthy and beautiful and we could do everything in our power to arm her with all the tools she needed to be successful in spite of ears that weren’t fully functional. Once we had confirmation of the hearing loss we already knew in our hearts she had, we set out to prepare to help her in every way we could. We worked with the local school system and were matched with an incredible deaf educator who was an absolute gift in helping us navigate everything. We started learning and using sign language. We pursued amplification options. And she was thriving. By six months, she had started signing herself, and watching her communication flourish made my heart swell with pride. By a year, she was stringing several signs together.
A few months after her first birthday, she would seem agitated and start looking around and signing “helicopter.” A few months after that, she started to frantically sign “helicopter ouch” and “helicopter out.” Desperate for an answer to what was troubling her, we took her to various audiologists and ENTs. Finally, when she was two-and-a-half, we learned a name for the sound she insisted she heard, but no one else did: tinnitus. We also learned that there was nothing we could do but distract her from it. A cochlear implant could also provide relief, but insurance would not provide coverage in her case. Around the same time, I clicked a link I saw on the Hands & Voices Facebook page I’d recently liked. It was a video of two young girls beautifully signing the lyrics of One Direction’s song “Story of my Life.” We’d just gotten an iPad and I pulled up the video to show Ruby. She was immediately enthralled. Ruby has never been one to sit still for long, but before the song had even fully ended, she signed “again.” She probably watched it ten times in a row. We soon realized it was exactly the distraction she needed when her ears were bothering her. And then she started asking for it on her own when the tinnitus was upsetting her.
A couple months later, on a whim, I emailed the publishers of the video – two young girls named Ren and Keely – to thank them for making and posting what had become such a wonderful distraction for our daughter. Half-jokingly, I mentioned Ruby’s obsession with the song “Let It Go” from Frozen, and that she would love to see an ASL translation of that if they were ever looking for ideas. I was completely floored when I received a response back – just days before Ruby’s third birthday – that they loved the idea and planned to make a video. I still can’t quite believe that two teen girls would take the time to make a video in the freezing cold for a toddler they’d never met. Ruby has watched all of Ren and Keely’s videos more times than I can count. I joke that she’s probably responsible for at least a third of their nearly 200,000 views on the “Let It Go” video. As we’ve watched them together over and over (and over), it’s occurred to me that these videos are invaluable not just because they offer such a wonderful distraction for our daughter. I’ve noticed my little girl lighting up and excitedly pointing out the girls’ hearing aids and eagerly showing off the new signs she’s picked up. And I’ve realized that the videos showcase something I hadn’t thought of when I was preparing her toolkit: positive role models. Ren and Keely (and the umpteen other ASL song translators we’ve since found and watched repeatedly on youtube) have helped Ruby find beauty in what makes her “different.” They’ve made her proud of who she is. She looks up to them, and while she’s never met them, she considers them her friends. I knew it was important for Ruby to meet peers who were deaf and hard of hearing, but I hadn’t considered the impact connecting her to deaf and hard of hearing teens and adults would have.
I’m so thankful for Hands and Voices and for all the incredible role models who serve as such wonderful inspiration for our family without ever knowing it. Jess Jacobsen-Buckley
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.
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.
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