Raising a Deaf or Hard of Hearing Child

Today was the day.

As parents of a deaf child, we always wondered how his future would be.

At some point, we felt overwhelmed, sad and very hopeless. We remember those days that we couldn’t see a clear future for him.

Today, he left from our nest and found his own wings. It was hard to let him go, but we knew he was ready.

He is ready because we didn’t let anyone dictate our choices.

He is ready because we never let him feel less capable of doing something, because we worked days and nights incessantly to make sure he developed a language.

He is ready because he had people around him that truly cared: teachers, audiologists, professionals and a wonderful organization, Hands & Voices where we together as a family learned so much and never again felt alone in this journey.

He is ready because we encouraged him to make friends, those that last forever, because he took advantage of every moment, every challenge, every adventure.

This is just a new beginning for him, there is still a lot more to do, only that this time he will do it by himself, he will advocate for himself and he will become a man.

Marbely Barahona

I have heard that oftentimes the first deaf or hard of hearing person some people meet is their own deaf or hard of hearing child. While for us that wasn’t the case, we had a similar experience, but with a different diagnosis. We have two boys who are both severe to profoundly deaf and bilateral cochlear implant users. Our youngest, also has Autism.

We knew one person with Autism. All we knew of Autism was what we saw in that one individual. I remember telling myself things like; no, our youngest doesn’t have Autism. He doesn’t act the same way or do the same things that person does. I think it’s just that we don’t socialize him enough since his big brother started school. His progress, or lack thereof, in speech is fine. We were told that not all children with cochlear implants progress at the same speed. The professionals advised us to not compare his progress in speech with his older brother’s progress.

A common question asked in our home is, “Is it the Autism, the hearing loss or just him being a kid?”. Our son was diagnosed as “Moderate” and “High-Functioning” on the Autism Spectrum. He is also non-verbal but uses some ASL and the Picture Exchange Communication System (PECS) to communicate with us. Over the years his receptive language skills have blossomed. Most days he wears his CIs with no issues. Other days, he knocks them off as if they are causing discomfort. It is often hard to determine whether or not he is having a sensory moment because of the Autism, being a “typical” child who is having a moment of defiance, or if there is something wrong with his CIs.

I like to say there is a lot of troubleshooting that goes on with our son. Some days he is happy to put his CIs on, while others days it can be a bit of a tug of war. I have a hard time somedays making him put his CIs on because in some ways I feel like I am not being mindful of his Autism diagnosis and what effects the “silence to instant sound” may have on him. Because his expressive language is still progressing, it can be a challenge to know exactly what is going on with him. He can let us know in sign or with PECS that he is hurt, sad, calm, or silly and wiggly. But when it comes to expressing exactly WHY he is feeling those ways, we aren’t always sure.

In the past, Logan has never really gotten a good “map” for his CIs and we think that is due to his Autism diagnosis. Getting him to reliably respond to any sounds he is hearing has been a work in progress. Before he was diagnosed, I dreaded going to the audiologist because it was a literal WWE match trying to hold him down just to run and impedance test. I can remember making sure that I wore clothes that would allow me to wrestle with him and not look completely disheveled after the appointment. Leaving those appointments, I would feel so defeated. I’d feel like I was a terrible parent for forcing him to go through the appointment. Then on the flip side, I knew that I wanted him to have as much good access to sound as possible because that’s what he needed if we wanted him to eventually use spoken language. For a number of years, all of his “maps” were manually made and set very conservatively.

Once we got the Autism diagnosis, things changed for the better. His behaviors all began to make sense. We started ABA therapy for him. His therapists have been quite accommodating in respecting our wishes of incorporating ASL in his therapy as a way of communication. Almost all of his therapists knew not one sign in ASL. Now, many of them have been inspired to learn more ASL and even use it with some of their other non-verbal clients. We’ve even had much better success at the audiologist! I can happily say that I no longer have to wear my “wrestling” attire to an appointment. With the help of his ABA therapists, we have worked on “mock audiology appointments” which have proven to be successful for Logan. He has gotten the best “maps” he’s ever had in his initial years of having cochlear implants.

While things are progressively getting better, we still have our struggles. We are learning together as a family. It’s not easy to pick apart which diagnosis is causing whatever action, feeling or emotion he may be experiencing. All we can do is take it day by day and one step at a time. In all of those hours and steps, we revel in the fact that he is uniquely him and we love every little thing about him. It makes us stronger as individuals and stronger as a family. Even though we have had some hard days, it’s always nice to look back at those struggles and celebrate how far Logan has come. It’s a great reminder that despite our current struggle, we will overcome it together as a family. For that, we are blessed and grateful for this unique journey.

LaShawna Sims, Bilingual Southern Nevada Regional Guide

Nevada Hands & Voices

During a staff discussion, the topic of “acceptance” came up. The journey of raising a child who is deaf/hard of hearing is an intensely personal one.

Hands & Voices posted this question on our Facebook page.

Parents,

Tell us about your experience:

I realized that I accepted my child’s deaf/hard of hearing journey when__________________.

Here are the responses that were shared:

I realized that I was given the gift of being this small human’s mommy, and God had His own plans for me with this journey. It was about a week after she was identified with bilateral severe/profound sensori-neural loss.

When I was no longer angry! It took a long time to get there also, probably 7+ years.

I realized that I accepted my child’s hard of hearing journey when she answered audible questions in sign language. She also has Apraxia of Speech, so her ability to form verbal words is super tough.

I was young when I had my daughter 18, 19 when I found out her hearing loss. I use to blame myself, that I had done something to cause this. When I stopped blaming myself and realizing that she was extra special. We started signing when she was 5-6 months old. I accepted it, when I stopped punishing myself for it..When she was one she got implanted with cochlear implants and that’s when our real journey started. Reaching milestone after milestone. She started first grade this year!

I found a sign language book at the store at the mall (remember when they had them) and started teaching her myself. At that point, no one official accepted she was deaf. Later, we switched to cued speech. That was on us, too. It was a very rocky road before diagnosis (thanks, Arlington Hearing Resources!)

I let go of the idea of what a “normal” child should be.

I accepted it immediately so that I could move forward and educate myself for my child, as denial gives no benefit to anyone. However, I have experienced several evolutions of understanding and ways of guiding my child, since there is no one resource or guide that applies to all deaf/hoh, or their attitude towards deaf culture. It is ALL on us as parents, that’s for sure… Educators and deaf culture can’t come together, and it is a terribly sad thing.

Honestly, not sure if I have fully accepted it yet. Going on three years now. I am waiting for the day to talk about it without crying. Y’all give me hope I will one day be able to fully and truly accept it.

I realized that I accepted my child’s deaf/hard of hearing journey when I had connected with parents and families, deaf adults and providers to learn from and feel supported. Transformational learning can not be done in isolation.

When she became “okay” with it. She got her hearing aids in the 3rd grade and was excited. Until the 5th grade…seeing her struggle with self esteem and not socializing hurt me to the core. She is now 15…growing in self advocacy confidence is returning…she wears her aids with no problem and is beginning to make d/hoh friends thru the camps she attended this summer.

When I was told she was hard of hearing.  It didn’t make a difference to me.

Well I have a twin brother who is profoundly deaf. My oldest son, we knew something was up around 2 months old they didn’t do newborn screen then. I accepted it right away, maybe because I grew up with it.When I was pregnant with my daughter we were prepared either way she is fine. Then there’s my 9 year old, we knew the second I found out he was a boy I knew he would have a hearing loss just not sure how bad.He was miss diagnosed 2 times before it came back moderate hearing loss.He also had severe speech delay with it my oldest never had speech problems.

I realized I had accepted my child’s hard of hearing journey when I could tell our story to other parents and not cry, but smile because the journey had made us so much stronger.

When I realized my strong, intelligent, beautiful girl; full of personality, can do anything anyone else can. Straight A’s and headed to the 7th grade! Proud mama.

I realized that I accepted my two sons’ deaf journey when I made friends with deaf adults and learned that it was all going to work out. I now consider their deafness to be my greatest gift. I have grown in ways that I never dreamed were possible.

My son was diagnosed when he was three. H&V, you all are great, and helped us to understand what we were going thru. I miss you all .

When my child was able to ask for help via sign language (at 10 months).

My husband is partially deaf (50% without hearing aids, 80% with), so we always knew it was a possibility. For my daughter, after her hearing test at age three. She had already failed the newborn screening, and had had two inconclusive ABRs. My son was as soon as he was born. Failed his newborn screening, but does have better hearing than my daughter.

I realized that God had blessed us!

I realized I accepted my daughter’s Deah/HOH journey when I met and got to know happy, well-adjusted, self-confident & successful d/hh adults who were willing to share their stories & culture, and also connected with parents who were supportive & knowledgeable. This process of acceptance & honoring continues today as I get to experience her as a happy, successful, self-confident mother & professional who is bi-lingual/bi-cultural.

It took me like six years to accept that he was hard of hearing and in the seventh year, my girl was born with the same problem and for me it was very hard, she is 4 years old and the boy 10. and I think I have not accepted it completely, I still wonder why?

Me tomo como 6 años, aceptarque el tenia perdida de audición bilateral y al séptimo año nació mi niña con el mismo problema y para mi fue muy duro, ella tiene 4 años, y el niño, 10 años. Creo que no lo he aceptado completamente, aún me pregunto por que?

He was one day old and failed two newborn hearing screenings. God gave me this beautiful little soul and made him how he saw fit. It’s my job to join him on this journey and help him any way that I can. My baby can do ANYTHING he sets his mind to.

I had an official diagnosis.

I could mention it to other people without breaking down and bawling my eyes out. It’s still a tough pill to swallow but it’s getting easier, but I still wonder why it happened. Now I just worry about the bullying I’m afraid he’s going to receive growing up (kids are mean).

I just wanted to share with you about my hearing parents . My hearing parents wanted me to be like other hearing peers . She (my mom) wanted me to manage and communicate better in the hearing World. She wanted me to hear and speak better in order to communicate via hearing people . I understand and respect their wishes . I can not change their views and opinions . They’re my mom and dad …

EHDI (Early intervention) did not exist when my daughter was born. That being said, once we had the diagnosis I was relieved, but not surprised as there is a history of deafness in our family. We charged onward. My daughter is very strong, independent, proud, beautiful Deaf woman who dreams big!

I realized it when I began to meet other families with children who were both deaf and hard of hearing. Seeing how “normal” they were and how they did everything else hearing children do. Once I let go of feeling embarrassed, to be open about it. I’m so proud of my deaf daughter. I love educating people who ask me. It makes me feel empowered and honored to be her mama.  Plus, I’ve met the most amazing families along this journey and when I think about if it weren’t for my daughter I might not know any of them…wow. I am so lucky!

Right before our appointment where the audiologist confirmed hearing loss… (12.5 months) after 12 months and roughly 6 audiology visits, two ENT visits, and starting Early start a couple months prior, I realized how sad I would be if she was determined to have normal levels and we would be kicked out of the program we loved so much with all of our DHH infant friends. Def made it easier to face the other challenges that came our way.

I don’t know. When she got accepted to Gallaudet?
Seriously though, about a week after diagnosis. I come from a family peppered with Deaf people. I knew the old realities, but man, so much has changed.

I realized that I accepted my son’s hard of hearing journey when he began to wear his hearing aids without being asked to. When he began to realize he needed them, I knew it was a real deal!

…when a family member said “he won’t have to wear his hearing aid all the time, will he? Like in photos?”

…when others’ lack of acceptance becomes your moment of acceptance!!

I went to my first Michigan Hands and Voices conference and met so many others from infancy to adults who thrive each day. I knew that my son thrives in his own way.

Resources for Deaf and Hard of Hearing Adults Who Serve Families:

Family Leadership in Language and Learning (FL3)

Deaf and Hard of Hearing Guidelines:

These guidelines are intended to offer suggestions for EHDI systems as to recommended practices in provision of D/HH mentor/guide/role model services to families/children.

http://handsandvoices.org/fl3/fl3-docs/DHH-Guidelines.pdf

Interviews with Deaf and Hard of Hearing Adults and Other Resources:
Families can explore these links with a wealth of diverse perspectives through stories, articles, websites and research on this page.

http://handsandvoices.org/fl3/topics/dhh-involvement/resources.html

The Importance of Families Connecting With Deaf/Hard of Hearing Adults
An interview with Janet Des Georges, Executive Director of Hands & Voices and Karen Putz, Co-Director of Deaf and Hard of Hearing Infusion exploring the idea of meeting a D/HH adult who is different from your child.

http://handsandvoices.org/fl3/topics/dhh-involvement.html

Language, Literacy, and Social Development:

When a child is identified as deaf or hard of hearing, surrounding the family with multiple levels of support throughout a child’s journey to language, literacy, and social-emotional development adds to positive outcomes. This section covers websites, research, and resources.
http://handsandvoices.org/fl3/topics/lang-lit-soc.html

Communication Considerations: What Role Can Adults Who Are Deaf or Hard of Hearing Play

Family-to-Family Support
Parents who are just beginning the journey can be supported and learn from parents with lived experiences of the joys and challenges of raising a child who is deaf or hard of hearing. There is something incredibly unique and important in receiving support from other parents and families who have children that are deaf or hard of hearing and have “been there.”
This section covers support opportunities and resources, including links to other parent organizations:
http://handsandvoices.org/fl3/topics/fam-fam-support.html

Hands & Voices Facebook Groups:
D/HH Guides: https://www.facebook.com/groups/DHHGuides/
D/HH Guides, Role Models, and Mentors: https://www.facebook.com/groups/DHHMentorsGuidesRoleModels
Military Families: https://www.facebook.com/groups/HandsVoicesMilitarySupport
D/HH Plus: https://www.facebook.com/groups/deafhardofhearingplus
O.U.R. Group: https://www.facebook.com/groups/HVOurChildren/
Unilateral Hearing Loss: https://www.facebook.com/groups/HVUnilateral

The National Center for Hearing Assessment and Management (NCHAM)
NCHAM has conducted a nationwide survey to gather information about programs that involve D/HH adults as role models, guides and/or Deaf Mentors in the EHDI system and beyond.
For a state-by-state list of D/HH Adult programs:

http://infanthearing.org/dhhadultinvolvement/states/index.html

NCHAM Deaf and Hard of Hearing Adult Involvement Learning Community:
http://infanthearing.org/dhhadultinvolvement/d-hh-learning-community-home.html

Publications Related to Deaf Mentor Programs: https://www.infanthearing.org/webinars/docs/deaf-mentor-summary.pdf

 

“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.”

 

I have attended two Hands & Voices Leadership conferences and my first Early Hearing Detection and Intervention (EHDI) conference. There is no place on earth that felt like home than those three conferences.

Being a parent of Deaf/Hard of hearing child, with strong beliefs and convictions–is a lonely place. Single motherhood is a lonely place, strong advocacy for Deaf and Hard of hearing children is a lonely place, being a female community leader is a lonely place. All of these roles come with lots of emotional pressures, and the pressure to look strong and capable all the time. Educated , informed, calm, collected , on top of your game, and prepared for any and all changes of plans–at each and every setting.

The weight of responsibilities on my shoulders gets heavier and heavier by the day–I feel emotionally and physically drained. I feel lonely,and on my own. Nobody gets it or understands it.

The first time I attended a Hands & Voices Leadership conference, I met other parents and listened to their stories, I felt complete, whole and at Home. I wasn’t alone anymore. I felt the warmth of home surrounded by mothers like me, experiencing the same emotions and feeling similar pressure

Things came into prospective and the vision became much clearer when I listened to other mothers tell their stories, share milestones, and share emotional highs and lows.

I realized that it is okay to feel down, overwhelmed, frustrated, but it’s not okay to feel alone when I am a member of the Hands & Voices home. There are hundreds of Hands & Voices mothers and leaders out there who get it, understand it, and are available to pull me up when I am down, wipe my  tears when I cry, and cheer me up when I feel helpless and frustrated.

I no longer feel alone, I found my way home.

A home filled with Hands & Voices warmth, support, and unconditional love and understanding of parents and family struggles.

I am emotionally charged and ready for whatever comes my way. I am headed to my smaller home a better mom, stronger advocate, and more capable community leader with so much to give and so much to share.

Thank you Hands & Voices for bringing me home.

Rana Ottallah

When my father was diagnosed with prostate cancer, I didn’t give it much thought. The prognosis was very good and the treatment was quick. My three deaf and hard of hearing kids were pretty young at that point and I actually waited to share the news until their grandpa was well into treatment. There were a few questions which I answered and life went on.

The second time around, my dad was diagnosed with Stage II Esophageal cancer. This time, the kids were teens. So from day one, they were involved and informed. We were optimistic that the cancer could be contained. My dad, a former Marine and World War II vet, approached chemotherapy like a war and hunkered down for the fight. The following year, a PET scan and blood work came back with good news: the cancer was in remission.

It didn’t last long.

When we arrived at the point when the doctor gently suggested hospice care, my siblings and I were all still deep into denial. Even after the hospice care nurse left, we figured hospice was something “down the road much later.”

Denial isn’t just a river in Egypt. It’s a coping mechanism that kicks in when you’re not ready to face what’s happening in front of you.

So we kept paddling down that river. Of course, I didn’t tell my kids what we were facing, because I was deep into denial myself. My dad was in a wheelchair at this point and we had a hospital bed set up in the family room.

The kids started asking questions to which I had no answers for.

Is he dying?

Will he get better?

How long will it take for him to be able to walk again? 

When my brother and I took my dad to the doctor, reality finally hit. I cornered the doctor in his office and asked him how much time we had left.

“I don’t think it’s days or weeks, but maybe…months.”

Yes, reality hit.

The only way to tell the kids was to gently but clearly tell them the news. I don’t even remember how or what I said, I just remember the sad looks on their faces as the reality hit them too. They had never experienced the death of anyone close to them and this was all new.

As painful as it was to see my own kids grieve and cry, I stopped trying to be the “strong one” and just broke down too.  Expressing what you feel is an important part of loss. Our greatest danger with handling the emotional pain comes from stuffing it inside and pushing it away. Deaf and hard of hearing kids–any kids–need to see what we feel. The healthy thing to do is to feel every aspect of it–let it out, let it flow. Go into the pain, instead of away from it. When kids see their parents handling life from a place of raw emotion with recovery, they too, learn that it’s okay to feel, to express, to reflect.

One of the most helpful things for my kids to get through the loss of Grandpa was to reflect on their best and funniest moments with him. We sat and shared stories. We also talked about the dark times as well. Anything and everything was on the table to be asked. Of course, depending on the ages of your kid/s, you’ll need to adjust your language in a way they can understand and process.

Keep it simple.

Keep it truthful.

Death and dying tends to be a subject we want to dance around. Instead, be upfront with your kids–see it as part of the celebrating of life, the imprint of one soul on this earth.

Karen Putz is the Co-Director of Deaf and Hard of Hearing Infusion at Hands & Voices. karen@handsandvoices.org 

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.

Towards a New Model for the Deaf Infusion of Leadership in EHDI Services

By Christine Yoshinaga-Itano, Ph. D.

The following is a Synopsis of the Libby Harricks Memorial Oration number 17 given in Australia in June 2015. The Deafness Forum of Australia granted permission for this printed synopsis.  

Imagine a world where a family with a newly diagnosed child with hearing loss is provided services by a pediatrician who is him/herself deaf.

Today, we have some examples of individuals with this level of education, but, if we are successful, these numbers will increase. Perhaps the Ear, Nose and Throat physician is also deaf or hard of hearing and the audiologist who diagnoses the hearing loss is deaf or hard of hearing. The parents are contacted by an early interventionist who is deaf or hard of hearing. The psychologist, social-worker, or counsellor who assesses the family’s child or who assists them through their adaptation to the diagnosis is deaf or hard of hearing. Some of these individuals communicate exclusively through spoken language. Others switch from spoken language to sign language depending upon the conversational partner. Others communicate exclusively through sign language.

In this imagined world, parents would navigate through the health and educational systems being provided services by individuals who are themselves deaf or hard of hearing, as well as professionals who are hearing. They are interacting with these individuals, not because they are deaf or hard of hearing, but because they have a significant service and expertise to provide the family.

Thus, we arrive at a concept of infusion into the fabric of the entire system. Many parents who have newborns diagnosed with hearing loss have never met or interacted with an individual who is deaf or hard of hearing. They may have only stereotypes of what it means to be deaf or hard of hearing. Their adaptation to the diagnosis which often involves grief and mourning is influenced by their previous experience with deafness and hearing loss. If parents’ initial interactions with the newborn hearing system happen to be with individuals who are deaf or hard of hearing, there to provide them with professional expertise, they will focus not on the deafness/hearing loss, but on the person who is supporting them. Knowledge about what a child who is deaf or hard of hearing could become and the things s/he could accomplish, can dramatically alter the sequence of the process of grieving.

As children who have benefited from early hearing detection and intervention (EHDI) systems grow up, there are an increasing number of them who are choosing to participate in the system as professionals in a variety of capacities. There are, for example, increasing numbers of children who are deaf or hard of hearing, users of hearing aids and cochlear implants, who have chosen to become audiologists. Some have chosen to become early intervention providers or teachers of the deaf. There is a growing number of individuals who are deaf or hard of hearing who have become allied health professionals, physicians, psychologists, social workers, teachers, pharmacists, dentists, occupational therapists, and speech/language therapists.

The journey for families typically starts at the referral from the universal newborn hearing screening (UNHS) in the hospital to either an outpatient re-screen or a diagnostic audiological evaluation. The anxiety of families arises when they are told that the child did not pass the hearing screening and increases at each level of the system and with the time that elapses until the family receives more information. For the family who is greeted by an audiologist who is a hearing aid, or a cochlear implant user or has chosen a visual communication without the use of amplification, the family begins, often for the first time, to establish an idea of what it means to grow up deaf or hard of hearing.

Deaf/Hard of Hearing Infusion in an existing EHDI system

In one metropolitan hospital system, two of the audiologists have congenital hearing loss. Families whose infants are tested by one of these audiologists would have the confirmation that the child is deaf or hard of hearing delivered by a professional who is deaf or hard of hearing. Immediately after the diagnosis from any audiologist at this hospital, the parents go to an office at the same hospital, where they are introduced to a professional who is profoundly deaf and who has cochlear implants but who used hearing aids for most of her life. She has worked as an early intervention professional for families who have infants and toddlers who are deaf or hard of hearing for over 25 years. This experienced professional provides counselling services immediately after the diagnosis of hearing loss to a significant proportion of families with newborns identified after UNHS in the state of Colorado, because she works in a pediatric hospital that is a center for excellence for pediatric patients with hearing loss.

Such interactions create a new “normal” for parents of newly-identified infants/children who are deaf or hard of hearing. Their perspective about deafness and hearing loss is now impacted by an individual who provides them support and professional services, knows what it is like to grow up as a deaf/hard of hearing individual and what it is like to live and work as an adult who is deaf.

If the family lives in the largest metropolitan city in this state, the first contact in early intervention is an educator of the deaf who specializes in early childhood deafness. She has a Master’s degree in deaf education and also in Spanish. She grew up with a bilateral severe-to-profound hearing loss and received a cochlear implant as an adult. She is fluent in sign language, spoken English and spoken Spanish. She has extensive experience working with families with newly identified children who are deaf or hard of hearing. She is a Colorado Hearing Coordinator who is designated as the first contact for families in the most highly populated metropolitan area in the state.

This Colorado Hearing Coordinator provides families with the many options that are available for their family, including early intervention services focusing on language, cognition and social-emotional development and if the family chooses, sign language instruction in the home from an instructor who is deaf or hard of hearing and a native and/or fluent signer. These services can be provided weekly in the home, in addition to other intervention services and the family may include other members of the family or care providers

A parent of an early-identified child in the state of Colorado provided this quote: “When we first received our son’s diagnosis, I looked at the doctor, he was hearing. I looked at the audiologist, she was hearing. I looked at the nurse, she was hearing; and as we walked out, I looked back at the receptionist and she was hearing. I had no idea what this (raising a deaf or hard of hearing child) was going to look like until you (the deaf adult) walked in the door.”

In all of the scenarios described above, the professionals who are deaf or hard of hearing, have professional training and experience in the professional service that they are providing to the family. In some cases, unless the professional identifies her/himself as a person who is deaf or hard of hearing, the family may not be aware or may not immediately realize that the professional is an individual who is deaf or hard of hearing.

While it is unlikely that any one family would see all of these professionals who are deaf or hard of hearing, the odds that they will encounter at least one of these professionals is quite high. On average, the families in Colorado will have interacted meaningfully with multiple and diverse professionals who are deaf or hard of hearing in the first few years of life.

In each of these situations, the family has an opportunity to ask these professionals questions about their personal stories and what it was like to grow up deaf or hard of hearing. Just as would occur with a hearing child, the family and child are exposed to a vast variety of diverse individuals, thus, providing a perspective early in the child’s life that there is a world of opportunities available, things they can anticipate as their child grows up, as well as challenges that families and children face.

Deaf/Hard of Hearing Role Models

In some systems, individuals are trained as role models.

Parents often ask basic questions: What’s wrong with my child? What will my child be like later? What can be done to help my child? (Bagnato, Neisworth, & Munson, 1997). Deaf and hard of hearing individuals with training are especially skilled at being able to respond to these families.

Questions reported by Hands & Voices organization indicate that some common questions that parents ask Deaf/Hard of Hearing Role Models are:

1) I saw on the internet that deaf adults have a low reading level – is that true?

2) What will my child’s speech be like?

3) You have good speech – how can I make sure my baby does?

4) Do you wear hearing aids? Why or why not?

5) Will you get an implant? Why or why not?

6) Should I stop playing my guitar?

7) Kids are cruel…. How can I make sure that my child won’t be teased?

8) You have good self esteem – how do I develop that in my child?

9) When will I stop crying?

10) What about school… can my child go school with his sister? Or does he need a special school? Did you go to public school?

They often ask personal questions such as:

1) Do you have kids? A spouse? Hearing or deaf?

2) What about sports?

3) Can you talk on the phone?

4) Can you drive?

5) How do you hear in the dark?

Parents appreciate a personal perspective from a D/HH role model. It increases the families’ openness to examine issues in greater detail. Families report that interactions with D/HH individuals calm anxiety.

Parents often believe initially that they have lost a modality forever. Most parents of newly identified children do not realize how meeting a deaf or hard of hearing adult will help them until after they have had the opportunity. Systems must create opportunities for parents to meet deaf and hard of hearing adults through presentations, workshops, home visits, and social events. Deaf and hearing families interacting together in everyday social environments, such as birthday parties, family get-togethers, attending sports events (baseball, basketball, football) games, theater, and dances, should be a normal expectation of life for our children of the present and future. Parents who see D/deaf and hard of hearing adults as valuable members of their team begin to understand the potential in their child. Often the D/deaf/hard of hearing adult is able to articulate what the child cannot yet. They lend ability and creditability for the child’s upcoming/future needs. They assist the parents as they discover the potential and strengths of their child. They can give hope and encouragement through the inevitable ups and downs of those early years and they can assist the family in finding new ways of communicating and thinking and living with deafness and hearing loss becomes the new normal for families. Families have probably never thought about:

1) driving with an inside car light on for visual cues,

2) looping the car, using FM assistive technology,

3) saying goodnight with the light on,

4) going upstairs facing the child and not speaking while climbing stairs without facing the child,

5) watching for opportunities to close the gap (incidental learning),

6) pointing out opportunities to cue the child to awareness of sound, or

7) using a vibrating alarm clock.

The deaf or hard of hearing child lives in a hearing world (family, church, neighbors). Meeting the deaf adult soon after diagnosis provides the family with an early opportunity to ask some of their questions and see these communication strategies modeled. The involvement of adults who are Deaf and Hard of Hearing should not be as token members, but leaders and trendsetters in our systems of care. Individuals who are D/HH can help families overcome family barriers to open, honest communication. They can provide families with examples of a sense of humor. They themselves provide an exceptional model for great inter-personal skills. Hearing professionals can benefit by inviting a role model to accompany them on family visits. However, if these individuals are serving a professional role, then there should be a mechanism for monetary compensation for their time and expertise. Deaf and hard of hearing individuals should be included in panel discussions and social opportunities. Play groups opportunities should include both deaf and hearing parents. In the Colorado system, the activities sponsored through our Families for Hands & Voices provide many opportunities for social and professional interactions with D/HH adults and their families. The Hands & Voices organization has a policy for the Infusion of Deaf/Hard of Hearing participation within Hands & Voices. This policy can be found at the following website: http:// www.handsandvoices.org/articles/deafpersp/V15-2_deafinfusion.htm

Deaf Mentors

Watkins, Pittman and Walden (1998) published outcomes from the Experimental Deaf Mentor Program established in the 1990s. The program provided families with a Deaf Mentor who taught the families American Sign Language, information about deaf culture and their personal knowledge of deafness. The children receiving a Deaf Mentor in Utah were matched with children in a SKI-HI early intervention program in Tennessee who did not have a Deaf Mentor. They found that the children participating in the Deaf Mentor program had significantly higher scores on tests of early receptive and expressive language. Today, the Deaf Mentor program includes about 18 states but not all states have programs that provide services to all families who have children who are D/deaf or hard of hearing who would like to learn American Sign Language.

In addition, there are other states that have initiated sign language instruction programs including Arizona, Arkansas, Georgia, Hawaii, Illinois, Vermont, Minnesota and Wisconsin, New Mexico (Abrams & Gallegos, 2011), and outside the United States, Kenya. Some programs call these sign language instruction programs Deaf Role Model Programs, (Abrams & Gallegos, 2011, Mohay, Milton, Hindmarsh, Ganley, 1998, Parasnis & Fischer, 2005; Takala, Kuusela & Takala, 2001).

In 2013, the Early Intervention Supplement to the Joint Committee on Infant Hearing Position Statement (2007) was published (http://pediatrics.ons.org/content/131/4/e1324.full JCIH, 2007). Two objectives dealt with deaf and hard of hearing individuals. Of the 11 objectives, three of them include objectives related to the topic of this presentation. The following discussion includes the exact wording of this Early Intervention Supplement, designed to be as recommended practice.

Goal 3a. (pg. e1328) Intervention services to teach American Sign Language (ASL) will be provided by professionals who have native or fluent skills and are trained to teach parents/families and young children.

Goal 10. (pg. e1337) Individuals who are D/HH will be active participants in the development and implementation of EHDI systems at the national, state/territory, and local levels. Their participation will be an expected and integral component of the EHDI systems.

Goal 11 (pg. e1338) All children who are D/HH and their families have access to support, mentorship, and guidance from individuals who are D/HH. This goal intends that families have access to meaningful interactions with adults who are deaf or hard of hearing who have the knowledge and skills to mentor, support, and guide families in culturally and linguistically sensitive ways and to serve as communication/language and social role models and mentors for deaf and hard of hearing children and their families.

The overarching goal is to have deaf and hard of hearing individuals woven into the fabric of EHDI systems at every level. Deaf and hard of hearing individuals know “what works” to meet their language and communication needs in a way that hearing people cannot. Since the support of language and communication of babies is intended to be the heart of EHDI systems, it is critical to include deaf and hard of hearing adults in these systems.

Currently, there are few, if any, EHDI systems that include deaf and hard of hearing participants in a meaningful way. The system should have diversity of representation at many levels. Deaf and hard of hearing persons should be included, for example, as EHDI directors, EHDI advisory panel chairs and members, administrators, Part C coordinators, audiologists, pediatricians, counselors, mentors, sign language teachers, and in other roles.

The Joint Committee on Infant Hearing Year 2007 Position Statement includes numerous recommendations supporting the inclusion of deaf and hard of hearing individuals in the lives of families with deaf and hard of hearing children (JCIH, 2007). The JCIH states:

“Almost all families choose at some time during their early childhood programs to seek out both adults             and child peers who are deaf or hard of hearing. Programs should ensure that these opportunities are             available and can be delivered to families through a variety of communication means, such as Web sites,e-mail, newsletters, videos, retreats, picnics and other social events, and educational forums forparents” (JCIH, 2007, p. 909)

Research demonstrates the benefits to families of connections with members of the deaf and hard of hearing community. Parents who have many contacts with deaf and hard of hearing adults exhibit a strong sense of competence in regard to raising their child (Hintermair, 2000). Hearing parents identify deaf parents as one of the most important sources of support (after teachers, therapists, and spouses) (Meadow-Orlans, Mertens, & Sass-Lehrer, 2003). Children from families who received deaf mentor services made greater language gains, had considerably larger vocabularies, and scored higher on measures of communication, language, and English syntax than similarly situated children without deaf mentor services (Pittman, 1998). Deaf community members are able to provide deaf children with something hearing parents cannot, experience as a deaf person.

In summary, the purpose of EHDI systems is for children who are deaf or hard of hearing to have the opportunity to achieve their potential, to have comparable opportunities to children with hearing. When individuals who are deaf or hard of hearing are infused throughout our EHDI systems, so that children who are deaf or hard of hearing can decide to become doctors, psychologists, audiologists, teachers, social workers, early intervention providers, sign language instructors, or deaf role models, successful accomplishment of the goals of EHDI will be met. Providing families and children with the support they need to develop skills commensurate with their cognitive potential should result in a world of opportunity for the newborns that are identified. That world is within our reach.

About the Deafness Forum Of Australia

The Australian Government funded the establishment of Deafness Forum in 1993 to provide quality advice to it on behalf of the entire deafness sector. This advice, offered consistently over two decades has informed government policy and played an important role in building a fairer and more inclusive nation.

The full monograph of this presentation including information on the Deaf Child’s Bill of Rights as implemented within educational systems is available at http://www.deafnessforum.org.au/index.php/events/libby-harricks-memorial-oration