Posts Tagged ‘Family Support’

Janel Frost: Reflections on Communication Access at Family Gatherings

October 18, 2017

Janel & Mason for Holley

What follows is my own reaction to Dianne’s post as a parent of a child:

This is my son. It pains me as a mom to watch my son go through feeling so left out at family get togethers, however, I don’t know what more to do for him. I’ve encouraged many family members to try harder to learn a language that could help him feel more included all the while realizing that they may use this new language one or two times a year. My husband and I have both taken turns to interpret when needed, but it’s not the same as direct access to communication–and who wants your mom a part of the nerf gun fight with all the cousins?

So I take delight in the fact that there is a place where my son can go to feel connected and a full participant–with others who use American Sign Language. We encourage and take part in his comfortable, communication accessible world as much as possible to let him know he is not alone. It is in that deaf community that we understand how he feels in the hearing world, and we don’t mind one bit.

This is my son’s reaction to my post:

Wow, mom. Yes this is exactly how I feel. I love my cousins, aunts, uncles and my grandparents, but when we have get togethers, it really is hard for me. I want to join in but get lost in almost every conversation and I just don’t want to bother anyone and ask to repeat for the third time. Uncle Greg and I will go out on the porch or in the basement just to find someplace quiet so that we can talk one on one. I like that he does that for me. It does sadden me sometimes that all my family members don’t know how to sign. I am glad I have the deaf community. I enjoy being able to talk for hours without having to stop to repeat. It just feels so free.

Janel Frost
Director/ASTra Coordinator
Michigan Hands & Voices
(248)845-8762
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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

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Pieces of the Puzzle: Jaden’s Story

October 7, 2016

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At birth Jaden had a hearing test like all newborns in our state and he failed; two weeks later he had a repeat test and he passed (or so we were told). The next several months went by without incident but at about 9 months, I felt he was not developing the way he should. Jaden was making milestones but later than most kids do.

At Jaden’s one year check-up I brought up my concerns to his pediatrician. it was shortly after this that Jaden began Early Intervention services.  Jaden began basic skills, physical and speech therapy.  Closer to 2 years of age Jaden also began occupational therapy.  Jaden’s days became filled with what I call “structured play”; every day of the week sometimes more than once a day, Jaden had one therapy or another.

It was by accepting the fact Jaden was not quite where he should be and by being willing to allow professionals into our home that we were able to start getting Jaden caught up.  He went from a boy not walking to one who could take steps and eventually run.

With the help of his therapists Jadan was making progress in most areas but his speech had not shown significant improvement.  Between 1 and 2 years of age, Jaden had 3 hearing tests all of which came back inconclusive.  Just after his 2nd birthday Jaden had an ABR and that is when we found out about his hearing loss.  Jaden has a severe to profound hearing loss in his right ear and a moderate hearing loss in his left ear.  He was fitted for hearing aids the same day he was diagnosed.  That day I was not upset; rather I felt relieved and almost vindicated.  I knew there was an issue and now I had the answer; we could begin to help Jaden in ways that we had not helped him before.  Finding out about Jaden’s hearing loss is what I call the first half of the puzzle that is Jaden.  His hearing loss did not explain all of his quirks, such as low muscle tone and feeding issues, but it did explain why he was not talking.

Within a week or two of Jaden being diagnosed we were put in touch with a teacher of the deaf for infants; she was a blessing to our family.  She began working with not just Jaden but our entire family once a week and what a difference it made!  Jaden started picking up signs right and left; especially signs for his favorite things like milk and cookies.  Now that Jaden had hearing aids, with the help of his speech therapist, his speech began to improve too.  Okay, so he was not talking yet but he was babbling which is something he had not done before.

In January of 2010 Jaden started at Little Listeners Pre-K class at the NYS School for the Deaf in Rome; since then there has been no looking back.  Sending our not yet 3 year old son on a bus to a school about 30 minutes away to attend a full day of school was an adjustment for the entire family but it has been one of the best choices we have ever made for him.  Jaden was in a small Pre-K class with a wonderful teacher and teacher’s aide.  At school Jaden also continued to get speech therapy from an amazing therapist every day of the week along with getting occupational and physical therapy both several times a week from great therapists.

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It is with the help, knowledge and daily communication that our family had with his team that blessed us with a whole new little boy. During his pre-k years with the help of his teacher and speech therapist Jaden went from a boy whose number of words could be counted on one hand to one who talks and talks and talks.  I never thought it was possible but there are days I crave silence; what a wonderful ‘problem’ to have!

When Jaden was almost 4 years old, he was diagnosed with a genetic condition called 22q Deletion Syndrome; this is the 2nd half of the puzzle that is Jaden.  We are fortunate in that Jaden does not have many of the health issues that others with this condition do.  Though this was not something I considered to be good news, it is something we are fortunate to know for it explains many of Jaden’s quirks; such as feeding issues which he no longer has and weak muscle tone and fine motor skills which we now know he will likely always have.

 

jaden-spring-2016

Over the past several years Jaden has blossomed into a funny, smart, confident and witty little boy in large part thanks to the knowledge that we have been fortunate enough to find out about him and being willing to accept the help and information that others could give us.

Today Jaden is 9 years old and in the 4th grade. Jaden’s newest adventure began in September of this year. Jaden has entered a mainstream school setting in our local school district (New York Mills).  We are fortunate in that Jaden has many of people rooting for him. Our family has had and continues to have tons of support from individuals that have worked with Jaden in the past as well as those that are new to his team. Jaden seems to be settling in nicely to his new school and he’s even joined drama club and band. I’m sure there will be some bumps in the road as Jaden embarks on this new journey however, we have every expectation that Jaden will continue to thrive and excel at his new school.        

I think Jaden’s story shows that the saying “Knowledge is Power” is so very true; accept the knowledge that others can give you about your child, embrace it and use it to help your child.  For our family, it is the knowledge that we have been given about Jaden, both good and not so good, that has allowed us to help him become the wonderful boy he is today.

 

Wendy Roback

 

 

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David Cluff: Inspiring Deaf and Hard of Hearing Teens

October 5, 2016

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My name is David Cluff and I am deaf, and this is my story.

In March of 1993 I was born with a virus called Cytomegalovirus, which is known as CMV. This virus has many side effects and doctors thought I might not survive. I was born pre-mature and despite what doctors initially thought, I was born healthy. I was welcomed by loving parents and would eventually be the oldest of four children.

My childhood was not like most kids growing up. At age three I was diagnosed with hearing loss and fitted with my first set of hearing aids. At age six, I woke up one morning and any hearing I had the night before was completely gone. Just like that, something that I cherished so much was gone. My world had changed in a matter of moments. I felt broken, unsure, and I missed the way things used to be.

Shortly after losing all my hearing, I was given the option to receive a Cochlear Implant. After lots of prayers and help from family, friends and people I hardly knew, I got my first Cochlear Implant in October of 1999. Shortly after recovery, I got the Cochlear Implant turned on–and very quickly, my ability to hear my parents, my own footsteps and the water running was restored.

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Did that magically make everything perfect again?

Nope.

Rather, it was the beginning of a journey of faith as I re-learned to hear the world around me. It was like a matching game of “what sound goes with what.” As the years went by and after a major move to the great city of St. Louis, Missouri, I was given another opportunity to receive a second Cochlear Implant for my left ear. It was my dream to hear with two ears again. I was once again faced with the challenge of re-learning to hear. Hearing with two ears is not the same as hearing with one.

Back in 2007, I was working closely with my surgeon, Dr. Hullar, on a five-year research study. He became a good friend and a great mentor to me. During one of the meetings in his lab he overheard my parents and I brainstorming on what project I should do for my Eagle Scout rank in Boy Scouts (BSA). Dr. Hullar knew my background in computers and said, “Why not build a website for deaf teens like yourself?” It was like a huge light bulb went off and I found something to be passionate about. Before I could actually start the project I had to get it approved by the BSA board. I was nervous as I really wanted to do this project no matter what and being able to do it as my Eagle Scout Project would make it more meaningful. The board members approved the project.

The project began and I was no longer alone on the website as teens from around the world joined in to help me. Out of all the teens, I created a group of key team members to help manage the project. Team members included JoEllen from Tennessee, Lesley from Texas, Josh from Missouri and Lissa from the United Kingdom. All of them are deaf and use cochlear implants and/or other hearing devices. I could never have done it without their support.  We did not only build this website together but formed friendships. We also had community professionals volunteer their expertise in graphic design, web design and more! It was amazing!  In 2012, I decided to put everything on hold and serve a two-year church mission where I was able to meet and help so many people. Upon my return home in 2014, the servers for deafteens.org had failed and it was lost. As devastating as it was, it was a great learning experience for me.
After months of working on a website design, logo work, and building content, deafteens.org became LIVE once again in May 2016. It was a thrilling moment as I sat with my wife and we launched the website to the public once again. This project is one of my biggest passions. At one point I thought, “I am no longer a teenager, so maybe I need to put it on the shelf.” But, as we can see, it did not stay on the shelf for too long. It was always on my mind and I knew I needed to bring it back.
Because of Dr. Hullar’s mentorship, I developed a confidence that I can do anything. Deafteens.org has become a huge passion of mine as I want to help others, especially teens, gain support to reach their dreams.

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Today, I am happily married to my best friend and a father to an energetic 8-month-old boy. Even as an adult, I am still learning to hear the world around me and cherish every moment I can. I have come to realize that life isn’t supposed to be perfect; rather, it is like a puzzle. When you get a puzzle in a box or bag you now have the choice to either put the puzzle together or let it sit on the shelf. My challenges came like a bag of puzzle pieces. So many pieces that it often felt like it would take years to put each one together to match the master photo. Yet, I had a choice. Am I going to let it sit on the shelf and let my challenges hold me back or am I going to do my best to put the puzzle together? Once completed you see the whole picture; but notice how there are lines going all over the place from each puzzle piece. It is not seamless at all, but it is also not broken. That is like life. We are given pieces of a puzzle and with time, we come to see the masterpiece.

My master puzzle is still in the works and I am seeing parts of it coming together–and that is when I know that everything is all right and that everything will work out.

Read more about David’s story, visit: www.davidbcluff.com

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Tabby Belhorn: There’s Room for Everyone On Our Path

April 4, 2016

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Thirteen years ago I was grieving the loss of having a child that could hear. My daughter had just been diagnosed with a permanent hearing loss. I was facing a lot of decisions to make about amplification, communication, doctors, and therapies. I left the audiologist’s office that day with a hundred emotions swirling inside.  I realized my daughter had most likely never heard me say “I love you” or calling to her from the another room in the house to say, “It’s okay, Momma’s right here” while she was crying. I also realized that day, that her life was exactly the same as the day before. She was happy, smiling, still had her favorite foods, toys, books, and TV show. Most importantly, she knew she was loved and she knew how to love as well.

My life changed that day, not hers.

Shortly after that day, my husband and I were contacted by  professionals to help us know what to do. We were provided guidance and information, but ultimately, we had to make choices for our daughter and our family. We were not aware of the conflict and controversies surrounding communication and amplification options for deaf or hard-of-hearing children. We simply made decisions that felt right to us for our family and our daughter.

We continued to make decisions that were right for our child and our family. We were lucky though, we knew we had options and choices. Part of this was because of our location, part because we worked with experienced and knowledgeable professionals, and part because we had support–family and friends were beside us to support our decisions.

A couple of years later I found myself working as a parent mentor.  Somehow I had become the parent that others went to for advice and guidance. During those two years, the job brought me into a world of differences and really taught me how to support parents who have a different perspective and those who made different choices than I did. That shift in focus was hard for me. Some days I didn’t understand why parents made the choices they did for their child and family. When I took the time to listen, and I mean really listen and hear what parents were telling me, I realized we were not all that different. We had the same goals for child and family, the only difference was the path we chose to get there.

One of my job duties was to establish a support program for parents and families of deaf children. My job was to provide support without bias for families of all deaf children regardless of the choices they made. This is how I found Hands & Voices.

Hands & Voices was founded by parents who were tired of the communication wars. They quite simply wanted to support each other, because raising a deaf or hard of hearing child alone is hard. The parents involved wanted unbiased and unbridled emotional support. A group of parents guiding parents.

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The first Hands & Voices conference I attended felt like home. In my life as “Reagan’s Mom,” I often found myself explaining the choices we made for our family and why, but when I attended the Hands & Voices conference, there was no need to explain myself. No one there judged us, disagreed with our choices, or disrespected our choices. Everyone had open arms and welcomed me and my family, because now we were all family.

Hands & Voices has shown me that it is okay to have my own opinion and personal belief system, but also how to set those aside and walk beside any parent of a child who is deaf or hard of hearing. Hands & Voices has a wonderful way of respectfully accepting individual differences, while focusing on our common goals to achieve success-individually and collectively. We do not let our differences separate us, but instead our differences bring us together.

Thirteen years on my path raising a deaf child and 11 years into my role supporting parents has made me realize two things; there is no fork in the road and we are all sharing the same path. We all want happy, well-adjusted kids. The path we walk is shared with parents, families, children, friends, Deaf adults, doctors, audiologists, speech-language pathologists, teachers, interpreters, and more. I urge you to take the time to talk to and listen to the people sharing your path and find the shared respect and support we all need.

There is room for everyone on our path.

 

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Guided by China, A Journey Abroad and Within

June 11, 2015

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As Board President of Hands & Voices Headquarters, I was honored to represent H & V through a Hear the World Foundation Grant, by joining U.S. educators and audiologists who have the common goal of sharing strategies on how to foster language development in children who are deaf and hard of hearing. Dr. Christine Yoshinaga-Itano, Audiologist, Teacher, and Researcher, periodically leads a group in conjunction with Soaring Hope Mission. This year, our team of US, Chinese and Taiwanese professionals traveled to Nanjing for a conference with China’s Newborn Screening Committee and then on to Yinchuan to directly work with 150 children, parents and staff in a regional Rehab Center.  Phonak graciously donated hearing aids and local representatives to join us as well.

As the Director of MN Hands & Voices at Lifetrack for over 14 years, I have had the pleasure of working with the most inspiring parents. I’ve been bolstered by the wisdom and life experiences of adult role models. I have also been humbled by the passion and dedication of professionals in the field.

As a parent of a young adult who is deaf, my role on this trip was intended to be that of mentor and counsel, based on my personal and work experience. At Hands & Voices, we use the term “Guide By Your Side” to refer to our trained Parent Guides who help families navigate next steps. In China, however, I learned far more than I can ever could impart. In the end, it was who was “Guided By China.”

A blog of the trip can be found here: Guided By China

Candace Lindow-Davies

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The ‘Why’ of What We Do at Hands & Voices

March 3, 2015

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During a break at a recent Hands & Voices staff and board meeting, I took a good look around the room. Some of the staff and board members were engaged in one-on-one conversations. Others were in groups. 

Over the years, every single person on the board and staff came to Hands & Voices because of one thing: a passion for families with deaf and hard of hearing children.

Passion.

Isn’t that so frou-frou? Passion? I mean, come on.

Dedication. Involvement. Contribution. Those are certainly words to describe people who serve at every level of Hands & Voices.

What’s the core of what we do at Hands & Voices? What are we about? Who are we about? What’s our mission? What are our values? What is the “why” of what we do?

To those who may not be deeply familiar for what we stand for and how we support families, there’s often the misconception that we’re all about choices for families. That it’s all about communication methods and modalities.

But it’s not that.

It’s all too easy to get hung up on trying to balance the dance of equality among the choices out there. When you do that, you never win. It’s never balanced. It can’t be. This whole journey with deaf and hard of hearing children can’t be summed up by communication alone. To do that is to compartmentalize the journey.

At Hands & Voices we are sometimes bombarded with finger-pointing by others who insist we must remain neutral, balanced, and equal on every level in our daily work.

Instead, our work goes deeper than that. It’s about the emotional ups and downs of being a parent and understanding this journey. It’s about reaching out so that no one has to journey alone. It’s about providing support during the rough times and celebrating the joys.

Call it frou-frou if you will. We call it passion. It’s the fuel that drives us to do this day in and day out–without always having the funding to do so.

Passion is what keeps us up at nights responding to a parent who is frantic about the next day’s IEP meeting.

Passion is what allows us to have the energy to drive three hours to host an event for parents and children.

Passion is what pushes us to share resources, knowledge, and encouragement so other parents can be empowered on their own journeys.

 

Karen Putz

Mom to David, Lauren, & Steven

Co-Coordinator of Deaf and Hard of Hearing Infusion at Hands & Voices

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What I Learned from Raising Three Deaf and Hard of Hearing Kids

December 10, 2013

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I’m nearing the end of my parenting season.  My kids are on the cusp of adulthood (or so, they think.)  At 20, 18, and 16, they’re at the point where they are deep into their own lives.  I’ve heard it said you never end your journey as a parent, so I’ve segmented this into seasons instead.  I would say the school years were one long winter season! Fortunately, I like snow skiing, so there were lots of times when we just skied through it. Other times, the school years felt like being stuck on a chairlift for hours with the wind and snow blowing through my bones. Yeah, parenting is like that!

Here are some random things that popped into my mind this morning as I reflected back:

Finding Support is a Blessing

In the early years of raising three deaf and hard of hearing kids, the most crucial piece for me was the support of other families with deaf and hard of hearing children.  They say it takes a village to raise a child and you’ll have to create that village for your kid.  I stayed open to meeting as many different families as possible. I didn’t care about the communication modes or methods, that wasn’t important to me. I wanted to connect over the common bond of raising our deaf and hard of hearing kids and getting through the occasional challenges.  I found families everywhere– in my town, state, across the U.S. and thanks to the Internet, literally everywhere.  I set up play groups in my home, at the mall, in the parks, and at the pool.  We’ve lost touch with some of the families who we connected with during the early years and have formed second families with others.  Each one of them had an impact on my kids while they were growing up. There’s that human need for connection and I just wanted to fill it on every level.  We sometimes drove for hours to attend an event with other families. There were some days I questioned the purpose of stuffing three screaming, cranky kids into the car for a short event, but in every case it was always worth it.

 

Kids Need Kids

Which leads me to the next random thought: the important of peers.  When I was growing up, I was the only kid with a hearing aid in my school–until I met my first hard of hearing friend, Shawn, in high school.  Just seeing the hearing aids perched on Shawn’s ears wasn’t enough to get me to connect with her.  If anything, I didn’t want to be reminded of my hearing status. Shawn and I were as different as night and day. Without the common bond of hearing aids, we likely would have never connected but a stubborn itinerant teacher insisted we spend time together.  Shawn was a rebel, a “rough around the edges” gal. I was a Goody Two Shoes.  She introduced me to brass knuckles and numchucks. I taught her the value of paying attention in class. We are still friends today.

At the time, I didn’t realize how important it was for me to connect with another person who also struggled to understand day-to-day conversation and understood the loneliness of being left out.  So when my deaf and hard of hearing kids were growing up, I connected them with as many other deaf and hard of hearing kids as I could.  And again, I didn’t care about how much or how little hearing they had, whether they had hearing aids, implants, or none, or how they communicated.  My kids grew up with kids who cued, signed, spoke, or combined–you name it.

 

Deaf and Hard of Hearing Adults are Essential

I can’t stress this part enough. Connect your kids with deaf and hard of hearing adults while they’re growing up.  If your kid wants to be a fireman, doctor, lawyer, pilot, pharmacist, engineer, janitor, entrepreneur, nurse, counselor, teacher, author, professional athlete, or Nobel Prize winner–go find a deaf/hard of hearing adult living that dream and connect your child to them.  Deaf and hard of hearing adults are out there in all walks of life just like everyone else, but it’s essential for deaf and hard of hearing kids to know them, see them, and connect with them in some way.  If you can’t find someone on the path your child wants to take, then perhaps your deaf/hard of hearing kid is going to be the one to blaze a new path.  Someone has to be the first down a path that hasn’t been taken before–perhaps it’s going to be your child.

 

Last, but Not Least

For years, I tried hard to blend in, fit in, and fly under the radar while growing up hard of hearing.  After I became deaf as a teen, I changed my attitude and embraced the journey.  There’s a line from the movie, “What a Girl Wants” and this line is something I’ve been telling my kids for a long time:

“Why are you trying so hard to fit in when you were born to stand out?”

Our kids were born to stand out. Let ’em shine!

 

Karen Putz

Director of Deaf and Hard of Hearing Infusion

Hands & Voices Board Member

 

 

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Candace Lindow-Davies: What Hands & Voices Means to Me

November 23, 2013

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I vividly remember the day we learned our son was deaf.  New parents as we were, I remember being unsure of his future, feeling crushed by the decisions we faced, and feeling so incredibly alone.  But what slowly built up our strength in those early months, throughout his life, and even today is the reassurance that we are, in fact, NOT alone.  We learned that there are families all across Minnesota, all across the United States, and the world on the same journey.  And when we come together and start to share our experiences, the differences between our geography, our cultures, our choices and paths…fall away.  What is left is this common bond of loving our child so much and our need to reach out to each other for acceptance, wisdom, guidance, innovation, resilience, and even laughter.  Hands & Voices means my family and most importantly, my son has a positive, up-lifting community who sees the gifts he brings and together, celebrates them.

Candace Lindow-Davies

 

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