Archive for the ‘Hands & Voices’ Category
Having just flown back from our Annual H&V Leadership Conference, the buzz is in the air….on Facebook, email exchanges, twitter, Instagram, and texts….
“It was SO good to connect.”
“Thank you for helping me with what I needed for a strong healthy chapter”
“Thank you for supporting me in a situation I have with my own child”
It’s just so wonderful to see the connecting, the exchanging of support, the “Wisdom Among Us”. We get such little face time together, that when we are together we talk a lot about feeling like we are back together as a family. We share our unique and yet common experiences of raising a child who is Deaf/Hard of Hearing, and we CONNECT! I personally walk away from the conference every year filled up and ready to make sure parent-to-parent support is available to all, and to tackle the challenges of improving the lives of our children in the health, education, and other systems that serve us.
The ‘magic’ or our family in some ways has elements we can define and prepare for, but also just happens when we are together. The logistics of bringing a conference together, however, is not magic – it’s hard work, TO DO lists, endless planning of details, and dealing with onsite happenings you just can’t predict. We learn from these experiences and also grow from them. I want to give a shout out to Molly Martzke, and Jeannene Evenstad, along with our full H&V staff that made the logistics parts of this conference come together.
But it’s not just AT the conference where we get this vibe. In fact, I just wanted to share a few moments that happened AFTER the conference, and I mean IMMEDIATELY after the conference when everyone was tired, looking towards home, and back to the ‘inboxes’ we so willingly abandoned for a few short days.
At our conference this year, we had the privilege of welcoming some international guests to our ‘family’ for the conference from Russia, China, and Kenya. As we closed out our time, people from among us stepped up to ensure that our guests got where they needed to go, created even more opportunity to enjoy their visit here in the U.S. and to ensure that the network of not just a few, but of many, continued the networking.
So… thank you Stephanie Olson and Lisa Crawford for opening your home after the conference, spending more time with our Kenya partner, Jackie. Jacki Oduor is giving to us the gift of herself, energy, and commitment to families in Kenya. We are so grateful to be connected with her.
Photo: Stephanie, Jackie, Lisa
To Candace, who not only helped arrange a visit from two special guest professionals from China, but went on to Colorado and spent the next day showing elements of the U.S. educational system in Colorado, and other activities to help broaden the guests perspectives. To our professional partner, Christine Yoshinaga Itano who helped arrange this as well.
And to Molly, who is the Leader for our Russian/U.S. Partnership Project, driving our guests in a rather large, 15 passenger van that tested the limits at times of wearing the hat of ‘driver’ amongst her other duties.
I wanted to mention these rather ‘logistical’ elements of the ‘network’ that helps us, in the midst of limitations of our capacity, the amazing number of people who step up and abandon their title for just getting done what needs to get done.
I am so proud to be a part of this organization. Not just for the stars on our map on our website that shows our growth, but that in any given moment, the number of people that are willing to step up and ‘just get it done’ is astounding to me. Thank you all, for making this 12th Annual Conference the best ever, and for keeping the network going even when we are not face to face.
Finally, as the Chinese visitors were boarding a plane after the conference to the next step of their journey, they turned to Candace and said, about their being here to experience Hands & Voices, “This is Destiny”.
Yes, it is.
Janet DesGeorges, Executive Director, Hands & Voices Headquarters
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As Board President of Hands & Voices Headquarters, I was honored to represent H & V through a Hear the World Foundation Grant, by joining U.S. educators and audiologists who have the common goal of sharing strategies on how to foster language development in children who are deaf and hard of hearing. Dr. Christine Yoshinaga-Itano, Audiologist, Teacher, and Researcher, periodically leads a group in conjunction with Soaring Hope Mission. This year, our team of US, Chinese and Taiwanese professionals traveled to Nanjing for a conference with China’s Newborn Screening Committee and then on to Yinchuan to directly work with 150 children, parents and staff in a regional Rehab Center. Phonak graciously donated hearing aids and local representatives to join us as well.
As the Director of MN Hands & Voices at Lifetrack for over 14 years, I have had the pleasure of working with the most inspiring parents. I’ve been bolstered by the wisdom and life experiences of adult role models. I have also been humbled by the passion and dedication of professionals in the field.
As a parent of a young adult who is deaf, my role on this trip was intended to be that of mentor and counsel, based on my personal and work experience. At Hands & Voices, we use the term “Guide By Your Side” to refer to our trained Parent Guides who help families navigate next steps. In China, however, I learned far more than I can ever could impart. In the end, it was I who was “Guided By China.”
A blog of the trip can be found here: Guided By China
During a break at a recent Hands & Voices staff and board meeting, I took a good look around the room. Some of the staff and board members were engaged in one-on-one conversations. Others were in groups.
Over the years, every single person on the board and staff came to Hands & Voices because of one thing: a passion for families with deaf and hard of hearing children.
Isn’t that so frou-frou? Passion? I mean, come on.
Dedication. Involvement. Contribution. Those are certainly words to describe people who serve at every level of Hands & Voices.
What’s the core of what we do at Hands & Voices? What are we about? Who are we about? What’s our mission? What are our values? What is the “why” of what we do?
To those who may not be deeply familiar for what we stand for and how we support families, there’s often the misconception that we’re all about choices for families. That it’s all about communication methods and modalities.
But it’s not that.
It’s all too easy to get hung up on trying to balance the dance of equality among the choices out there. When you do that, you never win. It’s never balanced. It can’t be. This whole journey with deaf and hard of hearing children can’t be summed up by communication alone. To do that is to compartmentalize the journey.
At Hands & Voices we are sometimes bombarded with finger-pointing by others who insist we must remain neutral, balanced, and equal on every level in our daily work.
Instead, our work goes deeper than that. It’s about the emotional ups and downs of being a parent and understanding this journey. It’s about reaching out so that no one has to journey alone. It’s about providing support during the rough times and celebrating the joys.
Call it frou-frou if you will. We call it passion. It’s the fuel that drives us to do this day in and day out–without always having the funding to do so.
Passion is what keeps us up at nights responding to a parent who is frantic about the next day’s IEP meeting.
Passion is what allows us to have the energy to drive three hours to host an event for parents and children.
Passion is what pushes us to share resources, knowledge, and encouragement so other parents can be empowered on their own journeys.
Mom to David, Lauren, & Steven
Co-Coordinator of Deaf and Hard of Hearing Infusion at Hands & Voices
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.
Janet DesGeorges, H&V Executive Director
Below is a compilation of thoughts about what it takes to be a leader at Hands & Voices! Hope you enjoy these simple comments! These are taken from the bi-monthly H&V E-NEWS series. If you would like to get on the list to receive information, resources, and updates from Hands & Voices, contact: email@example.com
What are your priorities?
“It is easy to develop a list of fifteen to twenty priorities, but I would argue that this is the same as having no priorities. Human beings typically can perform at a high level only if they focus their efforts, and the greater the number of priorities you have, the harder it becomes to focus.”
(Robert Steven Kaplan, What to Ask the Person in the Mirror: Critical Questions for Becoming a More Effective Leader and Reaching Your Potential)
So, what are your priorities? I have discovered over the years that many people would like me to focus on their priorities, and if I don’t have a good mechanism for the n-word (“NO”), then I may never get to what is really important to me and to achieving our goals at H&V. Remember, sometimes saying ‘NO’ to someone else’s request for your time/energy is a ‘YES’ to getting to what you know are the really important things. So, today, you might want to practice a ‘no’ or two. Someone once told me that my plate is full, and every time I say ‘YES’ to something, something else on that plate is slipping off. That visual has helped me to understand that there are only so many hours in the day, and we just have to be smart about our desire to say ‘YES’ as well as our ‘NO’. I am so grateful for all of you out there that have said ‘YES’ to the priority of supporting families via the Hands & Voices network. Now THERE’S a good ‘YES’!
“Slow down and enjoy life. It’s not only the scenery you miss by going too fast – you also miss the sense of where you are going and why.” -Eddie Cantor
It is always good to reflect on how far we’ve come at Hands & Voices, and where we are going! With over 50 chapters in full swing here in the U.S. and abroad, it is more important than ever to know where we are going and why! To all of you who put your heart and soul into this organization, I want to thank you from the bottom of my heart.
Don’t forget to have a little ‘down time’ when needed. Remember that our organization is here for the long haul. We want to be a part of something that will exist beyond us, and into the next generation of children who are deaf/hh. So, relax…. AND get ready for a busy, action packed year of supporting families who have children who are d/hh. I know I am!
“When you come upon a wall, throw your hat over it, and then go get your hat.” – Anonymous
Feeling a bit overwhelmed? Wondering if you really have time for all this? (And by ‘this’ I mean improving the systems that serve our children who are deaf/hh.) There are times for all of us when the obstacles seem too challenging. Someone says, ‘we tried that and it can’t be done’ and that seems to diffuse or deflate us. We are not sure whether our efforts will really make a difference. REMEMBER where we have come from, what we have accomplished already, and what we want to achieve.
We seek to support:
-A solid foundational start to the journey for our kids through informed decision making.
-Strong, healthy, communicating, language-laden children.
-Educational Excellence for all deaf/hh students.
-Prepared students ready to enter the work force.
Sounds daunting? If it were easy, others before us would have achieved these goals already. Keep your eye on the prize and keep moving forward. Together we can make a difference!
Pass it On
PASS IT ON…. One of our HQ Board members, Harold Johnson recently sent me a link to a TED talk about ‘Crowd Accelerated Innovation’ – talking about the concept of information dissemination and innovation in this age of technology (specifically YouTube). Not only the ability to pass on information, but about how innovation can actually be replicated and improved upon as it is passed on from one source to another. It’s been one of the defining characteristics of H&V. One chapter has a good idea, and another chapter replicates and builds upon on it -and successful support to families grows in both quantity and quality. So, when you have a good idea, a successful event, or good resources you’ve come across -pass it on… If you are interested in this concept and want to see the TED talk, click here.
Process is Important
“It’s not just what we do, but how we do it!” One of our favorite sayings around H&V HQ is to ask ourselves as staff/board members, “If I was not able to continue in my position, could the organization go on without me?” That is sometimes hard to do when our self-identity and desire to be needed is embroiled in our lives as leaders. This question ties to our current strategic plan focusing on sustainability and capacity. Organizations at some point cannot exist or depend on one particular individual. But it’s important to expand this concept beyond just the ‘what’ needs to get done to the ‘how’. What are the processes in place that keep the organization healthy? Decision making, prioritization of projects, project management plans…. It’s not just our ‘to do’ items that need consideration. It’s ensuring the procedures are in place and in writing so that if we left tomorrow, others could step in and not only know what to do, but how to do it. We want H&V to be strong, healthy and moving forward long after we are gone. That’s an empowering thought!
Find out more about Janet: Janet DesGeorges at Hands & Voices
Every day, our Hands & Voices chapters are connecting with families and doing some awesome work. Here’s a quick summary and highlights from several chapters:
Michigan now has 14 Parent Guides in the GBYS Program and has increased the number of families served by 300% in one year. At the end of a second visit recently, the Parent Guide said to the Spanish-speaking family that she hoped she had been able to help them. The mother replied through the interpreter, “Oh, you have helped us so much. You have given us a recipe to bake a cake!”
The GBYS Guides recently received training on “Cover Oregon,” the state-funded insurance programs and Medicaid. Leadership training will be provided in June. The GBYS program is partnering with EHDI to reach out to the homebirth and midwifery community as well as improving data collection.
Five new guides have joined the GBYS Program. MN H &V hosted an Annual Roller Skating event during a very icy cold night in January. 113 people attended and had a chance to network and meet several adult role models who are deaf and hard of hearing, along with a fabulous representative from the Roller Girls and the team mascot! Upcoming events include another collaboration with the Minneapolis Children’s Theatre, summer playgroups, and developing webinars and culturally-specific parent groups. MN H & V will be hosting the first ASTra Educational Advocacy Training based on the new Educational Advocacy book.
BC H & V recently completed a GBYS Parent Guide training. They are conducting interviews for another Parent Guide position.
BC H & V had an amazing Unilateral Coffee Night last month. Great support happening between families plus an adult with unilateral hearing herself offered wonderful attitude and perspective on growing up with unilateral hearing. BC H & V will be doing more of these specialized coffee nights in future.
Illinois now has 16 guides and recently completed a training. IL H & V hosted a “network event” during a teacher conference which allowed the guides to introduce themselves to the participating professionals/organizations and then we allowed each organization five minutes to share about their organization and leave each guide with their materials. We had over 20 organizations participate giving us a “one stop” experience to learn more about each other. IL H & V held two Mom’s Night Inns, one in the Chicago area and another in the central part of the state and they are gearing up for a spring family event. IL President, Andrea Marwah held an IDEA training at the ITHI Conference.
DE H & V brought Harold Johnson out to speak at Delaware’s Still Listening, the state Department of Health hearing loss conference to introduce the O.U.R. Project. DE H & V is working on setting up a series of Kidpower workshops.
In the works is a social event for families at the Delaware Natural History Museum with free admission, snacks, and interpreted tours. After all, everybody loves dinosaurs.
NM H & V will be establishing a GBYS program soon. The Christmas gift-wrapping fundraiser was a success.
The VA GBYS is now up to 150 families (23 are Spanish speaking) since August 2012. GBYS training is coming up in April. Two “Meet and Greet” gatherings for families are coming up.
TX H & V just finished an annual GBYS training which included a break-out session for D/HH Guides. Texas has nine Parent Guides (Four Spanish speaking) and four D/HH Guides. The number of families served is growing. TX H & V hosts an average of eight family events per month and recently produced videos in English and Spanish for a companion parent site.
KY H & V has been involved in several activities, including Lexington Hands Alive, a teen panel, Explore Your Future, New Beginnings Riding Program, Family Learning Vacation, and a parent night. A Big Brother/Big Sister initiative is in the works as well as a proposed Senate bill requiring hearing tests for all children prior to entering school. KY H & V welcomed three new board members to the team.
WI H & V GBYS is using Tele-Connect options to pair Guides with families. Face-to-face contact is still the best option, but the Tele-Connect option works well if families have a sick child or in the case of inclement weather. Two Spanish-speaking Guides have joined the team.
CO H & V has a new GBYS Coordinator, Liesel Thomas, a parent of two deaf children. Her story is here: The Thomas Family: A Story of Passionate Perseverance in Parenting. CO H & V is partnering with two deaf organizations to create a Role Model program and is also working with a graduate student to survey EHDI experiences and parent to parent support for families with deaf and hard of hearing children.
WA H & V GBYS is in the fourth year and has one coordinator and six Parent Guides. The goal is to increase the referrals and work with more families as well as hosting events.
NV H & V GBYS recently hired a new Parent Guide for the Vegas area and looking to add a Spanish-speaking Parent Guide. Working closely with the state EHDI program and looking to expand services to families.
TN H & V will be offering monthly open conference calls to share resources and connections. The final revisions of the TN Resource Guide for Families of Deaf & Hard of Hearing Children are being worked on. The Advocacy Committee is working on a Deaf Child Bill of Rights.
PA H & V GBYS is now getting direct referrals from the Department of Health. A total of ten Parent Guides have been trained and offer a diverse background of experiences. Parents can be matched up with more than one Guide if they have specific interests.
GBYS training, website, and brochure are under way with a focus on collaboration and outreach with agencies and organizations. The Guides will be attending upcoming parent workshops and EHDI. NE H & V continues to collaborate with the “Connect” program and the monthly reading program which connects families with D/HH adults.
UT H & V hosted two activities in February, a Night at the Capitol (pizza, met with legislators, and toured the Capitol) and a family game night that was popular with families with young children. Utah is focusing on outreach and activities to families in the rural areas of the state.
MS H & V is moving along toward chapter authorization and accepting applications for board members. They held a Valentine’s banquet and attended many state conferences and workshops.
IA H & V has welcomed several new board members and continues to build up the GBYS program and plan for the upcoming Hearing Loss Symposium.
ME H & V held a family winter event which involved sledding, building snowmen, and popcorn and hot chocolate. The group is working hard to incorporate GBYS into the state and expanding their board with new parents.
WY H & V added a Fundraising/Grant Specialist to the team. The 2nd Annual Night 5K is in the works. Hearing Aid legislation did not pass, but the state funded a Hearing Aid program to cover hearing aids for children.
GA H & V is gearing up for the Hands & Voices Conference to be held in the fall and has just submitted the GBYS application. The chapter is participating in a number of projects, coalitions, and initiatives: Let Georgia Hear (insurance coverage for children’s hearing aids), Georgia Pathway to Language and Literacy, UNHSI State Stakeholders’ Group.
February 26, 2014 the Manitoba chapter launched!
These are just some of the updates we’ve highlighted from our recent GBYS/ H &V Chapters meeting. We will share more updates in future posts. It is truly exciting to see each program in action!
The Hands & Voices annual Leadership Conference is always my safe haven. One year’s theme, “Finding the Balance Within” was exactly what I needed. In my role with Hands &Voices, I have spoken to over 200 moms around Oregon. I have seen marriages stressed, mothers feeling overwhelmed and siblings trying to figure out where they fit in with all the appointments and worry associated with having a sibling with hearing loss.
Studies show that 95% of parents of deaf/hard of hearing children have no history or experience with hearing loss. Having a newborn in itself can be stressful. When your newborn is diagnosed with hearing loss or deaf+, the diagnosis can challenge many areas of your life and create a strain on relationships, marriages, and can send parents spiraling in all directions as they face this new reality.
Parents of school aged kiddos face their own levels of stressors as they ensure the educational and emotional health of their child. I know three sets of parents who have had to leave Oregon to find the right school for their child.
Have more fun… it’s what I have been telling myself for the last 8 months, and what I heard in the opening plenery of the Leadership Conference. I know I need to pick up my camera and do what I love to do. I know I need to spend more time with my friends. I see that many of us parents are not feeding our souls; we are not having fun.
Getting back to who we are, not our labels, not our IEP challenges; but who we are, our being. It’s really hard to have fun and be ourselves, especially in the beginning of the process. I have spoken with parents of school aged kiddos who feel if they let their guard down or relax for one moment, their child’s communication will falter, their school life could suffer or their emotional well-being will dwindle.
We forget that if we don’t take care of ourselves first, if we don’t get back to who we are, the individual within, we won’t have what we need to advocate and support our child. We also forget to ask for help. Our Guide By Your Side program and chapters are here to assist you in supporting your child in school, at home, and on the playground! Those of you new to the process don’t know what you should know and you certainly don’t know where you need help. Parents of school-aged kiddos have been attending IEP meetings for awhile and may not consider the benefits of having someone else at the table or just having another (trained) parent to talk to.
What do you need that you don’t have? What would a balanced life look like to you? How do you feel when you lay down at night? If you don’t know then tonight when you go to bed take a deep breath and listen. That is your authentic feeling. Do you need to make any changes?!
So as spring slowly approached and the days lengthen, we hope that you also slow down, set aside your worries and challenges and enjoy the warmth of the sun that is just around the corner! Watching kids play outside and in the pool is a great reminder to get a little more ‘child-like’ and have fun. So do that. Go jump in a pool, run through some sprinklers, lay in the grass looking up at the stars, and eat a smore. It’s time for all of us to recharge and remember that we are parents first; parents to kids who just want to be kids.
We were dropping Ashlin off at college. We walked into her dorm room to find that it had been entirely decorated by her roommate. I was dumbfounded. I asked the roommate, a pretty young brunette with lots of energy why she decorated the entire room without Ashlin. “She’s deaf. I didn’t think she’d mind”, she retorted. My mind whirled. I won’t tell you how this dream/nightmare ended, but I did wake up sweating and breathing heavy; worried beyond belief. Should I go to the dean of students if this happens, I wondered. This is a form of bullying. Who do you do to at the college level? What does the Dean of Students do anyway?!
My heart ached most of the day. How am I going to protect her? How is she going to protect herself? What if her dorm mates play a prank on her in the middle of the night? How would we know if she was safe and okay? There are days when I am driving and I come up with ways for the girls to turn down a drink without loosing face at college (they could just say they are allergic, right?!). I don’t think I am neurotic; I may be Italian but all parents think this way, right?!
The thought of keeping my girls in a bubble is so appealing. No one will be able to play pranks on them or hurt them. No one will tease them. As Ashlin approaches double digits in age this spring I realize that more and more she is going to have to take care of herself; I am going to have to trust that she can do it and that she will be okay.
It is my and her father’s job to ensure she can take care of herself. It is our job to let her go and experience the world and the people in it; the good and the not so good. And you better believe that she will learn how to physically take care of herself! I guess I have to slowly start letting her take more care of herself. Both my girls are strong beings. They will be just fine! Right?!!!
- process of change: a process or period in which something undergoes a change and passes from one state, stage, form, or activity to another.
As parents of any child we go through transitions as our children graduate to different stages in their own life. I am finding myself in that category right now as my baby just turned 5 (yikes! No more babies!!), and my oldest is about to turn 9 (that sounds so old!). Obviously as they gain more independence so do I which is incredible (and timely!!)
There is also a level of angst in this next phase of our life. My girls have been nicely wrapped up in the arms of a great private school for the last 7 years. By the end of this month we will know if they have been accepted at one of the mainstream schools we’ve applied for next fall. Why leave such a wonderful school that has taught my girls so well and has held and supported me in the early, tenuous years? Well, it’s time. The thought of leaving our school makes me incredibly sad, but I know that with transition and change come so many incredible opportunities.
The other part of my angst is that as the girls get older there are so many more things to teach them! Just the other day at the grocery store I mentioned needing to go back to the ‘produce’ department. Neither girl knew what I meant. “The produce department”, I said. They both looked at me vacantly. Immediately I went into panic mode. “I haven’t taught them about the departments in a grocery store and soon enough I am going to have teach about some really important things about life! I am terrible at this! I am clearly NOT ready!” I screamed internally at myself.
I remember listening to some of Hands & Voices colleagues and fellow parents talk about the grief they re-entered as their child grew up and transitioned into pre-school, middle school and college. I know these changes are tough on any parent, and I think for us as parents of deaf/hard of hearing children there is a deeper layer of grief, and release that we experience. When Ashlin moved from Early Intervention into pre-school I encountered so much anxiety. I had such a strong, personal relationship with our Early Intervention provider who took care of me as much as she did my daughter. Who was going to fill that void for me? There was also physical space created as I no longer had weekly Early Intervention appointments. What would I do with that time? Actually work?! That particular transition, just like the one I am currently entering, gave me space and time to focus on myself. I am currently finding that to be an uncomfortable place to be in.
For the last 7 years (Ashlin was identified at 18 months as deaf), I have fought insurance companies, got a legislative bill passed, learned and learned some more, gone to countless appointments, learned how to teach my girls language…. And, thankfully, I also walked into my role with Hands &Voices. And now with this new transition a space has been created so that I can really grow and succeed in my own life.
Last year’s theme at the Hands & Voices Leadership conference was about creating balance. I was interpreting that as taking time to go for a run and maybe have a girl’s night out every so often. Almost a year later (okay, so I can be a slow learner!!), I think the message was really about remembering who we are at our core; feeding our core being so that as we encounter these transitions with our children we aren’t so lost. In the beginning of this journey it is definitely challenging, but I encourage you to try. Do something each day or each week that feeds your core being.
And yes, the girls now know all the departments in a grocery store. They learned that same day! The other shoppers likely thought I was crazy (well, I did have a crazed panic look on my face!), but I feel better as a mother!
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