EHDI 2019- By Senior ASTra Advocate-Vicki Hilpp

EHDI 2019
Chicago was COLD!
This year’s National Early Hearing Detection and Intervention conference was held in Chicago. Let me tell you that it was COLD in the Windy City, especially for this southern girl from Georgia! Temperatures were in the single digits, and we could see our breath as soon as we walked off the plane and onto the gangway into the airport. We had a fabulous group to travel with, including some of our Parent Guides, ASTra Advocates, our H&V Board President and even a Georgia Pines Early Intervention Specialist. After checking in, we headed out into the COLD for lunch, and were lucky enough to get the shuttle driver to drop us off close to our restaurant. However, we had to use foot power to get us back to the hotel. It was so COLD that we decided to double time it back and I think we made the 15-minute walk in less than 10.

Did I mention that Chicago was COLD?!? I think when I look back on that trip being “COLD” will be one of the things that stands out to me, so that will be my theme for describing this whirlwind of a conference. You may have figured that out by now 😊. Here are the COLD things that I took home from the conference:
Caring: Beyond the chilly temperatures, and in the confines of the beautiful (and warm) hotel, the Conference got kicked off with a great reception that evening. Catching up with old friends and mingling with new ones was such fun. The local H&V chapter hosted an incredible parent gathering that evening as well, and I think there were probably more than 100 parents in attendance! It was amazing to hear the stories from each family, hear about their journeys, challenges and successes. I have to say that I am moved to tears each time we have parent gatherings. The strength and understanding that we can give one another never ceases to tug at my heart. I’m so thankful to be part of such a caring, loving community of parents who all share a love for someone who is D/HH.
Optimism: One of the focuses of our ASTra program is engaging families who are transitioning from early intervention into preschool. I attended several sessions that taught about this ever-important transition period. There was some great information in the sessions, but what makes me so optimistic for our transitioning families in Georgia is the phenomenal collaboration between our stakeholders. At the Georgia Stakeholders meeting we had EHDI coordinators, early interventionists from GA Pines, Hands & Voices Guides and Advocates, and wide range of professionals around the state whose purpose is to enhance the lives of our children with hearing differences. Listening to each person describe what was working in their own job, what we can improve upon, and then brainstorming ideas to work together to make services and supports even better was truly amazing to me. I left the meeting feeling very optimistic about the working relationships in our state. Great things are continuing to come for our children!
Laughter: Well, there was a LOT of laughing going on at EHDI this year. Its wonderful when you work with a group of people who you truly like and respect. Although the days were packed with information, we still made time to enjoy each other’s company and made some new friends as well. I have to say I probably laughed the most during the Dad’s panel Lunch, which was also hosted by H&V. I always look forward to panel discussions involving Dads, because they have such a unique (and funny) perspective on life and this journey we all share.
Determination: I heard from and met professionals who are dedicated and on-fire for our children. I believe there were about 1000 people attending the conference this year. That’s a lot of determined people committed to ensuring positive outcomes for people who are Deaf or Hard of Hearing. As a community, we are a force to be reckoned with! Another favorite session I attended included college students who are also D/HH. Hearing their stories, you could feel their determination to have the lives they choose for themselves. They inspired me to dream big for my own daughter! The best quote of the whole conference was given by one of the students to a mom who was having to continuously fight for her child in school. She gave her some tips and ended with “Don’t give up! Be that mom from hell.” So, if you’re reading this post, and you’re feeling tired, or down, or just plain frustrated, listen to the words of this very wise young woman, and “Don’t give up!”
Also, you might want to steer clear of Chicago in early March, because its COLD there!
                                                -Vicki Hilpp, Sr. ASTra Advocate and lover of all things warm 😊


EDHI 2019: Chicago-by Parent Guide Katie Hope

EHDI 2019: Chicago

For those of you who know about EHDI and those of you who don’t, this post is for you!  I had the privilege of traveling to Chicago for the EHDI Annual Meeting with our Georgia Hands & Voices chapter, and WOW!!!  We had a blast together!  I left the conference feeling like information was oozing out of my eyes, ears and fingers.  I feel empowered, more informed, rejuvenated and my heart is full! I was also very ready to get home to my two redheaded loves, even though the younger of the two (ahem, Odin, I’m looking at you) is right in the middle of the terrible twos right now.  I digress. Back to EHDI!  I’m going to start with some background on what EHDI is and share some resources from the meeting, and then I will finish up with sharing more about my personal experience there!

What is EHDI?  
EHDI stands for Early Hearing Detection and Intervention, and it is an initiative to improve how early we identify hearing loss in children and enroll them in the appropriate early intervention programs.  Currently, the goal is 1:3:6:  each infant should have their hearing screened by 1 month of age, hearing loss confirmed and diagnosed by 3 months, and enrolled in early intervention by 6 months.  Every state has it’s own EHDI program.  Check below under resources to find a contact list to for your state EHDI representative for more information or to get involved! 

Why is early diagnosis and intervention important?  
Babies are born ready to take in language from the time they are born!  Isn’t that incredible?  However, hearing loss affects their ability to soak up language.  The sooner we know, the faster we can ensure they have ample access to language, whether signed, spoken (accessed with the appropriate hearing assistive technology) or both.  Accessible, interactive and abundant access to language is VITAL because language affects so many things – communication, thinking, learning, problem-solving and social-emotional development, all of which children need for success in both academics and in life! 

What is the EHDI Annual Meeting?  
Now about the conference! Every year, medical and educational professionals and nonprofit organizations who serve children who are Deaf or Hard of Hearing (DHH), as well as families and individuals who are DHH gather from across the nation to learn about all things hearing loss.  There are informational sessions on a wide variety of topics, an exhibit hall with booths and posters set up for mingling and learning about different research, resources, agencies, support groups and companies, three big presentations on current research or current topics.  Through all these avenues, we have the opportunity to learn about up-to-date research, resources, support opportunities, cultural competence and best practices on how to enhance the operation of EHDI programs and provide early language and literacy support for DHH children.  Best of all, we build relationships!  The meeting is a fantastic opportunity to network with a wide variety of people who work with DHH children and share our perspectives, collaborate and learn from one another!

Why is it important to share our various perspectives and areas of expertise?  
The more we learn about all the facets of caring for a child with hearing loss, the better we are able to provide 360 degrees of support!  As parents, we are seeking guidance and an important perspective from professionals on how to provide access, language, and promote literacy through audiological management and appropriate interventions, but it’s important to remember that our perspective as parents is a big piece of the pie too!  We may not have had formal education and training on hearing loss, but we’ve got some pretty amazing on-the-job training that you can’t get anywhere else, and we typically spend more time with our children than anyone else. All that to say, seek help and support and take advice, but remember to trust your gut and give that feedback to professionals too!  Every child is different, and you know your child best!  Also, it’s very hard to get caught up in the diagnosis and appointments and equipment and therapies and forget to enjoy our children.  A big message at the conference was to remember to slow down, savor the little moments and accomplishments, recognize your child’s strengths (and your own) and build upon those.  I think this is important to bring back to our team discussion for 360 degrees of support, as social and emotional wellbeing is equally important to our DHH children and our family as a whole, and that piece is often overlooked.  

Accessibility Wins!  
The conference was incredible.  The accessibility was amazing!  There were interpreters galore, preferential seating, augmented sound systems, captioning and sheer awareness of how we need to be considerate of access and inclusive with all of our conversations. Let’s take a moment and check out this picture from one of the sessions:

There are three interpreters here just in this one session!  The one at the podium is interpreting and signing everything for the audience.  Then there are two more interpreters sitting down in front of the panel.  One of the Dads on the panel is Deaf. Since he doesn’t have a good view of the interpreter at the podium, these seated interpreters are facing him so that one of them can sign to him everything that is being said.  The other voices whenever it’s the Dad’s turn to share. He signs, and she voices what he’s signing for the audience.   My brain was so tired and full from all that my eyes and ears were taking in, but it was incredible to see and feel the inclusion regardless of the mode of communication!!

Special Topics and Takeaways:

Unilateral Hearing Loss 
One of the lectures focused solely on unilateral hearing loss.  Although they represent a substantial portion of the DHH population, these kiddos tend to be a very overlooked for early intervention and also in the school system.  Historically, people thought these kids would not have any unique needs since they have one typically hearing ear, assuming that putting them at the front of the classroom with their typically hearing ear toward the teacher would be sufficient.  However, current research shows they do have more speech and language, academic and social-behavioral difficulties than typically hearing peers.   Some of the challenges kids have with single-sided deafness or hearing loss are difficulty with localization and sound and word recognition, especially with background noise(classrooms are definitely not quiet environments).  Localization is figuring out where a sound is coming from.  Difficulty with this can be a safety concernsuch as when crossing the street or getting separated from a parent in a busy store and being unable to locate where their parent is standing and calling for them.  Research presented during the lecture shows that the grade repetition rate for children with UHL is TEN TIMES HIGHERthan typically hearing peers, and 50% struggle academically.  However, get this, only 3%have IEPs.  Another huge problem with any child with hearing loss (and kids with UHL are no exception) is listening effort and fatigue. They have to work so much harder than their peers to listen to what is going on in the classroom that they get very tired and have a much harder time focusing on school tasks on top of all the listening. 

So what do we do about it? We’re not entirely sure what the answer is, but making sure these children have IEPs and are:
·     receiving necessary services
·     being monitored for fatigue (they may need listening breaks)
·     teachers are following up with the student to make sure they are hearing AND understanding the curriculum or assignment (remember, they’re working very hard just to listen in the first place),
·     and ensuring proper hearing assistive technology and/or accessible visual languages are in place.

A friend of mine who has a daughter with single-sided deafness once told me that she feels as though people tend to focus on the “hearing” in Hard of Hearing or on the “typically” hearing ear and overlook the fact that they do also have one ear that doesn’t hear.  These kids do have unique needs for access to language and learning, so let’s work together to build awareness and make sure we help them get it!

Transitioning from Early Intervention to School:
One session I attended was focused on bridging the gap between early intervention and school.  The main point was that although there have been GREAT strides made for birth to 3, it’s important for both parents and professionals to understand that early intervention alone does not ensure that a child with hearing loss will continue to meet developmental milestones and stay on target and succeed academically. “Proper school placement and appropriate accommodations is an essential component to ensuring optimal outcomes for a child with hearing loss.”  Under resources, I included a helpful podcast about public education, advocacy and IEPs that is worth a listen if you need a place to start learning about the advocacy process for school!


·     Find your state EHDI representative! http://www.infanthearing.org/status/cnhs.php  

·     Hands and Voices FL3:  Family Leadership in Language and Learning Hands & Voices has just rolled out a new program to support continued development of state EHDI systems and to allow for meaningful parent involvement in those systems. Visit the website to find resources for language, literacy and social development, as well as ways to get involved!  I believe they partnered with the Clerc Center below to bring us a free online learning opportunity called “Focus on Early Accessible Language.”  See links under Clerc Center for more info.   http://www.handsandvoices.org/fl3/

·     Laurent Clerc National Deaf Education Center   The Clerc Center offers evidence-based resources, online learning and training opportunities and support to families and professionals working with DHH children.  Just this week, a free online learning opportunity was released: “Focusing on Early Accessible Language.” Check it out for the opportunity to learn, interact with other families of DHH children and watch a panel of professionals and parents discuss current research and personal experiences on providing language for DHH children.  The live sessions have ended, but the videos and comments will be available until the end of the month!
Also, here is a specific link on their website that is full of resources for families on how to provide early accessible language:

·     Sign On  This is a really awesome ASL “Virtual Immersion Program!”  Many states do not have Deaf Mentors, or sometimes there isn’t much opportunity to interact with local Deaf or Hard of Hearing adults to learn about Deaf Culture and learn and practice ASL.  Sign On offers online sessions with an ASL Ambassador (DHH adult who is trained and fluent in ASL) from the comfort of your own home!   https://signonconnect.com

·     ASL Connect  If you’re interested in learning some basic sign language, check out ASL Connect!  They offer free videos of basic ASL vocabulary (including ABCs, numbers 1-20, family, emotions, colors, and more).  They also offer free online ASL Lessons.  It’s a great place to get started, and they also offer more advanced online instruction.  https://www.gallaudet.edu/asl-connect

·     Ripple Language – Bilingual Language Growth Chart  Katherine and Mandy are Speech Language Pathologists who work in early intervention, authored a book together on closing the language gap for children who are DHH and also developed a very helpful (and visual) Bilingual Language Growth Chart:  the DRIP-EY, that can help you track a child’s language(s) and determine if they have a language gap.  The chart is used to plot and track language assessment scores so you can literally see a comparison between the child’s chronological age and their language age, and you can track two languages at a time if the child is bilingual.  Very cool!  They also offer professional development as well as online RIPPLE chats for parents during which they provide language resources, everyday language experiences for families, shared reading principles and story telling, as well as interaction with other families of DHH children.  https://ripplelanguage.com/services

·     One Deaf Child - Rachel Coleman  https://youtu.be/b1VUpNv80IQ

·     All Ears at Child’s Voice – A Hearing Loss Podcast  This is a wonderful and informative podcast specifically about public education, parent rights, IEPs. You can learn how to advocate for your child or how to support families through the transition process and throughout their school years.

My Top 5 Moments from EHDI!
I absolutely cherished being surrounded by other parents, professionals and my own colleagues who have influenced, challenged, provided validation, and/or supported our journey with Odin!  There’s no way I can choose a favorite part of the meeting.  However, I can narrow it down to my Top 5 favorite experiences!

Meeting my mom friends, my tribe, my community
My Meag and my Lana.  We are part of a small group of mom friends who all have Deaf and Hard of Hearing children.  We are all very different, and we even live in 6 different states.  However, all 6 of us chose a similar path with our DHH kiddos: to raise them bilingually with both spoken English and ASL.  We also ALL had no idea how to do that and struggled to find ways to learn and practice our ASL or how to balance both languages.  Almost a year ago, we were all searching and hoping for someone to practice signing with, and we found one another on Instagram through @whyisign!  Immediately, we started practicing together through a video chat app, and it was like an emotional catharsis! What we all felt but hadn’t really acknowledged to ourselves was that deep down we were also yearning for a connection with other moms who understood the specific challenges we were each facing. This group of strangers practicing our ASL through an app on our phones quickly transformed into an emotionally supportive, loving and accepting community.  We have talked almost every single day for a year!  We’ve been through so much already on our individual journeys with our kids, but through it all we still lean on one another and can be open and honest about what we feel without worrying about judgment.  We share laughter, tears, resources, language ideas and talk equipment, advocacy and IEPs/504 plans.  We love and adore all of our families’ children from afar and celebrate birthdays and celebrations through video on our phones.  This was the first time I got to meet Meag and Lana in person! While it was both thrilling to actually meet them in real life and hug their necks, I also felt like I was meeting up with longtime friends that I just haven’t seen in a while.  Next up, let’s get ALL of us together!!!  So much love to my “Signing Mamas!!!”

                                           Signing with Stacy
So remember when I mentioned above that I met Meag and Lana through @whyisign on Instagram? That is Stacy’s account!  She started it to help people share their stories about why they sign in hopes that we can all inspire and connect with one another!  Well, mission accomplished!!  Meeting Stacy was definitely a fan girl moment for me, both because I admire her so and see her as an icon and major role model in the Deaf Community (she is also the Coordinator of Training at the Clerc Center and she is very passionate about helping hearing parents find resources for their DHH children), but also because she is Deaf and a native signer and I was sooooo nervous about signing with her!!!! But you know what, she was so warm and wonderful and all that anxiety melted away and simply became genuine connection and an amazing and very personal chat.  I walked away feeling even comforted and more confident in our family’s choices and decisions for Odin because of her openness and willingness to share her perspective and experience.  Also, I got a real taste of “Deaf Bing” (Deaf tendencies) with Stacy – and that was the long goodbye!  I think she and I must have said we have to go and goodbye at least 5 times before we actually went our separate ways haha!  I already cannot wait to meet again!

GEORGIA Representation and Collaboration! 
The first plenary presenter spoke of coalition and a collage being bigger than the individual pictures, of working as a team, and I really see that in our state.  I have never been so proud to be from Georgia than since I joined Georgia Hands & Voices.  Our representation at our Georgia Stakeholder’s Meeting was incredible, and I believe that we are collectively moving in the right direction for our DHH children and their education!   As a parent and new Parent Guide, I truly appreciated the presence of so many different stakeholders and the collaboration, and also how passionate each of them is about improving our EHDI system. 

As for my GA Hands & Voices ladies - I am surrounded by such an amazing, smart, compassionate, fierce, down to earth, and just plain fun group of moms!!  We had SUCH a great time bonding over the conference, sharing stories and soooo much laughter!  One of my favorite times was sitting around the dinner table and listening to them tell hilarious stories of how, amidst all the emotional and stressful ups and downs of this roller coaster of a journey, they have been able to find humor all along the way!  I love their hearts and their group dynamic and that I get to be a part of this group and build upon that, learning from their experiences so that I can be a better version of myself to give back to families who are just beginning their journeys with their DHH children!

Panel of Deaf and Hard of Hearing College Students
This was by far my favorite session at EHDI!  A group of DHH college students shared their personal and educational experiences growing up in hearing families and in a hearing world.  I relished their perspectives as a younger generation of DHH adults and felt so moved by them and empowered in my own decisions for Odin.  Several of them did not have full access to language until they were older, and although they may have experienced some degree language deprivation from that, there they sat in front of me as college students, insightful, compassionate, powerful, strong in their identities, and it was amazing to watch their hands and fingers just fly!  
One thing that was hard for me and always is when I read or hear about it, was that several of them felt very disconnected from their families because they never learned to sign and there always felt like a barrier between them.  It’s one of the things that scares me the most – that one day Odin will seek connection outside of our family because he couldn’t find it within it.  On the other hand, they were very encouraging for hearing parents and didn’t resent their own parents.  They seemed to accept and respect that their parents were doing what they thought best at the time, and I found that very comforting because I think most of us are all just doing the best we can with the information and resources we have.  

One of my biggest takeaways here brings me back to the Hands & Voices motto – “What works for your child makes the decision right.”  I want to listen to Odin and follow his lead.  I’m teaching him to listen, so I need to be sure I’m listening too!  If he’s showing signs of social and emotional struggle, or if he’s asking me to advocate for him or I see that he needs it, or if he chooses not to sign or to take off his cochlear implants, I want to be able to put my feelings and comfort aside and help provide him with what he needs so that he always feels supported and included, especially within our family! 
I also found myself feeling very appreciative for the accessibility on my side of the table this time!  As a relatively new ASL user, I am nowhere near fluent.  I would have missed so much of the nuances of what these students were sharing, so I was very grateful to have an interpreter so that I could follow and understand their full message! 

Rachel Coleman giving Odin a shout out! 
While I was at the EHDI meeting last week, I got to meet and sit down with “the” Rachel Coleman!!  I was completely star struck and kind of like a 13 year old girl at a Backstreet Boys concert (a little embarrassing at 33). But you have to understand that this amazing mom has been “in our living room” on our tv for a big part of Odin’s life. He absolutely adores her. He frequently asks to see Rachel (meaning: I want to watch Signing Time or Rachel and the Treeschoolers) and constantly signs and sings “Helping out around the house,” “the 7 continents song” “H2O-whoa whoa whoa whoa” and “jingle bells.”  Yep.  Still Christmas over here, according to Odin.  

Rachel has inspired me as a mom, an advocate, a learner and a teacher.  At the base of it all, we are both hearing moms who have a child with hearing loss, so she’s been there and knows alllll about the challenges we face in providing language and also about finding celebration in all the small things. So my fan-girling was in part because of the role model she’s been to me, but also because she is so special to Odin too. He thinks he knows her!  And she was so sweet and made him a video while we were sitting there on her couch chatting it up!  

In addition to Signing Time, if you’re a parent and your kiddo is Deaf or Hard of Hearing, I highly recommend you watch her video, “One Deaf Child” (link listed in Resources section).  She has a wonderful way of sharing in and validating our fears and worries, while also providing us with a fresh and beautiful perspective - her young daughter’s view of the world. I’m so grateful to have her ahead of us on this journey and for all that she has provided other families and children as she and her daughter, Leah, have walked together on their own hearing loss journey!