Raising a Deaf or Hard of Hearing Child

Panel Session: Engaging Families and Leaders in a Diverse World

This year the Hands & Voices Leadership Conference brought cultural diversity to the table. A group of seven women, moms and clinicians whose cultural heritage represents many corners of the world, participated in a discussion panel.

Cultural diversity is a topic we need to discuss so we can better serve families from different cultural backgrounds. Culture is the integrated pattern of learned beliefs and behaviors (Nunez, 2006; Betancourt, 2003). It explains how we view and value the world. It is influenced by socioeconomic status, religion, sexual orientation, occupation, etc. (2006, 2003). Culture is the way we think, act, and interact with others. People from the same race do not necessarily share the same culture. As service providers, we should practice, grow and master our cultural competence skills. Cultural competence allows us to determine the social and cultural influences in a person’s health beliefs and behaviors. It is the ability to interact with people who are different than ourselves (Nunez, 2006, Dy, 2011).

In the following paragraphs, parent-guides/panel participants discuss key aspects to keep in mind when serving our Hands & Voices families:

Different cultures have different reactions to a diagnosis of hearing loss. Those reactions influence how and when we seek support. As parent-guides we can help families access support services sooner rather than later if we can connect with them and understand where they are in their own journey.

Our Connection: As parent-guides serving families from different cultures, we need to keep in mind that there is a common connection between us and the DHH families that we serve, and that the connection is the common diagnosis. This is an unbreakable bond that will open the door for us to serve and support those families. Language and translations: Language barriers also create challenges. Terms in English may not reflect the same meaning in different languages. Families need to understand exact terminology, be able to share the correct information, and exchange viewpoints about their child’s care to ensure a clear understanding of the decisions they make on behalf of their children. Are we connecting families with similar backgrounds so that they can feel a sense of familiarity especially at a time when everything is new and unknown?

Family preferences: We need to understand where each family is in their own journey. Find out about the families’ view of hearing loss, and support them accordingly. For instance, after the diagnosis some families are comfortable jumping in and starting an action plan. However, other families may need time to absorb, digest, and understand what their child’s diagnosis means to them and how they choose to approach the decisions they need to make regarding their child’s language acquisition, education, and even medical or professional treatment. It is important to provide a wide variety of opportunities for engagement. Small intimate gatherings are just as effective as big social events. Educational opportunities both virtual and real-time can bring important information. Resources should be accessible at a time that is convenient for families. We need to keep our hand on the pulse of the family when it comes to introducing new supports, like a deaf mentor, support group, family activities, etc.

Extended Families: Extended large families also play a role in many cultures and may impact how we support certain families. As members of Hands & Voices, we already know that it takes a village to raise a Deaf or Hard of Hearing Child. It is important to think about grandparents’ or other family members’ views on deafness or Hard of Hearing, and how we can include and involve them in our efforts to serve and educate their families.

Asking for help: Things may get difficult, and the tools that we have may not be sufficient for supporting some diverse families. At Hands & Voices, we have members from different cultural backgrounds. Reaching out to them may help parent-guides discover new resources or learn different options on how to better support a specific family. We should all keep in mind that asking for help and resources does not make us lesser advocates or guides, because all parent-guides face many challenges serving families from a different culture than theirs

We should pay close attention to each family’s dynamics and preferences, be aware of cultural influences, and offer our support accordingly. We are not alone. We all are constantly navigating others’ beliefs and behaviors. Finally, we should ask for help when in doubt, or if we think we are running short of resources. We are here to help each other help more families succeed.

Thank you to Rana Ottallah & Rosabel Agbayani parent-guides for their input in writing this summary. Thank you to all the panel participants for the content of this summary: Apryl Chauhan (CA), Yiesell Rayon (HQ,CA), Janet DesGeorges(HQ), Djenne-amal Morris (HQ), Rana Ottallah (LA), Rosabel Agbayani (CA), and Alejandra Ullauri (IL).

References:

Betancourt, J.R. (2003). Cross-Cultural Medical Education: Conceptual Approaches and Frameworks for Evaluation. Academic Medicine, 78(6), 560-569.

Dy, C.J., Nelson, C.L. (2011). Diversity, Cultural Competence, and Patient Trust. Clinical Orthop Related Research 469, 1878-1882.

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.

The China group visiting a Colorado preschool after flying from the conference in Texas to Colorado.

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.

You try parking this huge van perfectly every time.

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.

Networking together.

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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Disclaimer:

The blogs listed below are written by parents of deaf and hard of hearing children. The blogs are shared as a resource for families with deaf and hard of hearing children and do not indicate an endorsement by Hands & Voices.

A Mom’s Musings

An American Mom in Tuscany

CI Circle Parent Blogs

Kodiak, My Little Grizzly

Mothering Three Deaf Daughters–My Journey

Musings of a Momma