Posts Tagged ‘raising hard of hearing kids’

A New Model of Deaf and Hard of Hearing Infusion

September 25, 2017

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

By Christine Yoshinaga-Itano, Ph. D.

christine itano

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

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

Jessica Stern: JUST GOOGLE IT

August 28, 2017

“Information helps you to see that you’re not alone. That there’s somebody in Mississippi and somebody in Tokyo who all have wept, who’ve all longed and lost, who’ve all been happy. So the library helps you to see, not only that you are not alone but that you’re not really any different from everyone else.” -Maya Angelo

IMG_1638

In the 90’s, there was no Google website to go to when you wanted to search for tips on teaching your deaf child how to speak. There was no online forum where you could talk with other parents in your shoes in order to find out what worked for them. There was no app on your phone to help teach you ASL. Parents were left to their own resources and gut instincts, they were left with vague recommendations from their audiologists, and they were left with hand scribbled landline phone numbers of someone that had a deaf child.

My parents were in those shoes of not knowing what laid ahead for them. They had just been told that their 15 month old baby daughter was profoundly deaf in both ears as a result of Meningtis. They lived in rural Minnesota in a town of 1,200 people. The only deaf people in town were 80 years old or more. My parents desperately needed a family to empathize with and to relate with the issues they were going through.

The moment that gave them hope was getting a phone number for a couple in the Pilot Parent program. Dennis and Deb were the parents of a girl who also had Meningitis as a baby, and had been deaf for about 5 years. This family was the Morrows and they were our saving grace. Over the next decade, our moms became very close and learned to rely on each other. There were many phone calls to ask:

“Is this right?”

“Is this normal?”

“Tell me I am not ruining my baby…”

With everything they shared, the most important thing Deb told my mom was, “You will meet a lot of experts that will tell you what to do, but remember, the most important expert in her life will be you.” We were one of the lucky families, not everyone was able to find this type of guidance.

CHALLENGES BEYOND THE FRIENDSHIP

No matter the motherly advice my mom received from this family, there was always still a lack of professional advice based on real life cases. One of her biggest struggles was that she was not sure what accommodations the school system was legally required to offer. In an effort to know more, she joined a state board in order to surround herself with others who knew more.

With this support system, she was able to understand so much more when it came to IEP’s and services. In fact, with the expertise of other board members, I was the first D/HH child in Minnesota to have the public school system help financially with an interpreter within a private school. I did not stay long at the parochial school but it was something that my mom’s hard work and research helped make happen.

A significant lesson that my parents learned right off the bat was that you can and should try every tool out there. Each person is different and each person will benefit differently. Instead of looking at different routes as successes and failures, they looked at them as crossing out the items that didn’t work and keeping the items that did. There were many things that worked for us, and even more things that didn’t.

“YOU WANT THREE QUESADILLA MEALS!?”

We had a rule they made when we went out to eat because dining out was a chance for my parents to teach me how to be assertive. This story often makes my parents seem like they did not care, but it is the opposite… They cared so much that they struggled to watch me go through the situation of dining out. They started me with this practice at a very young age.

When it was time to order, whether it was McDonalds or Perkins, I was left to fend for myself and it would be a conversation between the waitress and me. If questions were asked by them, I had the chance to smile and nod or I had the chance to ask them to repeat themselves.

IMG_1634

For many years, my dad did not order a meal for himself because they knew with certainty that I would not get the food I ordered and he could eat my food. In fact, when I was 16, I accidentally ordered three quesadilla meals instead of three quesadillas. That was a $48 mistake…

As a child, I was the picky eater who would order a cheeseburger with no mustard, no onions, and no pickles. After smiling and nodding at the clerk, my order would come with extra onions, extra mustard, and pickles. My mom would just hand me more money and send me off for a second chance.

For years it seemed like I would not learn, but slowly and surely I began to ask the waitresses to repeat their questions, I would tell the cashier that I was deaf, and I would repeat my order back if needed. Now, as a 30 year old woman, I am confident going through a drive through and telling them I will see them at the window to give them my order.

“I’M A BARBIE GIRL, IN A BARBIE WORLD”

Music was one of those things that we struggled with trying to figure out. When a kid with hearing aids wants to learn lyrics to a song today, it’s easy to go to MetroLyrics or Lyrics.com. A song can be played on repeat until the feeling of the beats becomes natural and the words become second nature.

I grew up in the days where radio was the source of music and songs could not be played on repeat on iTunes or YouTube. There was no way to look up lyrics beyond learning them from sound.

In true family love fashion, my parents and sisters came together to make music work for me. My older sister, Dani, would sit in the car and record the radio to a cassette drive. Then, my mom and dad would listen to the cassette and write down the lyrics on a sheet of paper. They would have to listen very carefully, mulitple times, in order to make sure they were on track with the words. To this day, my mom always laughs and says that no grown man should know the words to “Barbie Girl” by Aqua.

There are going to be challenges and there are going to be solutions. The solution might not be ideal, but there is almost always a way around it.

IMG_1632

THE FUTURE IS BRIGHT

If there is any advice I have for parents, it would be that the future is bright. There are so many opportunities out there for support and resources. I would be confident saying that my parents would be jealous of the options out there today as you begin this journey with your D/HH child.

Take advantage of everything you can get your hands on. Go to the family camps, try out the different technology options, follow blogs of those who have gone through this already, and never set limitations for yourself or your child. And if all else fails, at least you have Google, Siri, and Alexa to ask for help.

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

You Can’t Possibly Provide Support Without Bias

July 24, 2017

FullSizeRender (5)

I was wearing my “What’s your sign? ASL” t-shirt one day when a friend pointed it out and asked, “Isn’t that showing your bias when you display your communication choice? I thought Hands and Voices was ‘neutral’ when it comes to favoring communication choices?”

There are often a lot of misunderstandings about supporting families with deaf and hard of hearing children without a bias toward communication choices. “You can’t possibly provide support without bias,” people often challenge us at Hands & Voices.  I frequently see the word “neutral” associated with the idea of supporting families. In fact, I wrote about it here: Neutral is a Shade of Color, Not an Organization.

If anything, the opposite is true. The people who become a part of Hands & Voices are pretty passionate about a lot of things when it comes to supporting families with children who are D/deaf and hard of hearing. When you truly operate without bias–you are able to join a variety of organizations, mingle with people from every communication experience, be comfortable with every combination of choice, and open-minded about the experience of raising D/deaf and hard of hearing kids. No one blinks twice when you attend an event centered around a certain communication philosophy or technology. Because at Hands & Voices, we know that the more you learn, and the more you experience, and the more you open your mind–the more you can provide to families on the parenting journey.

Here’s more on Supporting Families without Bias.

Yes, you CAN celebrate your own experience, choices, and journey. You CAN share your expertise and experience in ways that do not manipulate another person’s journey. You CAN mentor/guide/educate without the intent to manipulate, belittle, or manage a family’s experience.

I have often said, “My journey does not define your journey.” Families can take what they want and need from my experience and frame it into ways that helps their own experience. There’s quite a difference in saying, “Let’s explore ways you can provide communication access for your child,” versus “I think you should provide your child with _________.”

You can take the journey “with” the family, not “for” the family.

hands and voices babies

In my early days of being a Deaf Mentor in early intervention, I had families who opted for cochlear implants for their child. They asked me questions that I didn’t have answers to–I had hearing aids. So we learned together. I brought in others who could answer the families’ questions. I went above and beyond to learn everything I could. I went to the hospitals and provided support before and after surgery. That’s just one example of how you can provide support along the journey–even when the family’s experience is quite different from yours.

When people meet me, they often make assumptions based on my expression of communication. They usually throw me in one communication camp or other, based on what they see/hear at the time. What saddens me is that I come across this communication marginalization almost on a daily basis. Through my work with families and young deaf and hard of hearing adults I see this happening all the time: separation, judgment, and segmentation based on communication skills and choices. I’ve seen families torn to shreds on the web about the choices they make for their D/deaf or hard of hearing baby/child.

It breaks my heart.

I believe in the mission and the purpose of Hands & Voices:

Hands & Voices is dedicated to supporting families with children who are Deaf or Hard of Hearing without a bias around communication modes or methodology. We’re a parent-driven, non-profit organization providing families with the resources, networks, and information they need to improve communication access and educational outcomes for their children. Our outreach activities, parent/professional collaboration, and advocacy efforts are focused on enabling Deaf and Hard-of-Hearing children to reach their highest potential.

I’ve said this before, and I share it here again:

At any given time, Hands & Voices is whoever is a part of the organization. Families and individuals are not the sum of their communication experience and we don’t identify our Hands & Voices organization merely by those choices. We do our best to include everyone who wants to be a part of the movement of providing support without bias to families. Whenever we stumble along the process, we try harder yet again. The bottom line is to support families along the journey of raising deaf and hard of hearing children. We all have the same goal in mind: well-adjusted, successful kids.

As for being “neutral,” to me, that’s a shade of color, not an organization. What I love seeing instead is an organization that is passionate, vibrant, and colorful– an organization which is made up of amazing, diverse families, professionals, and individuals who celebrate the many different ways there are of being Deaf/deaf and hard of hearing.

Now that’s Hands & Voices. And I invite you to be a part of it.

www.handsandvoices.org 

Karen Putz

 

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail