Posts Tagged ‘raising a deaf child’

Yiesell Rayon: A Rude Encounter

March 19, 2019

It’s always exciting to try new things, but I never expected a rude encounter to come with it…

After a week long conference, a group of us wanted to get out and try “Chicago’s favorites.” Karen Putz, Co-Director of DHH Infusion, lives in the Chicago area. Anita Dowd and Virginia Moore from the Kentucky Commission for the Deaf joined us. We grabbed lunch at Lou Malnatis pizza. Karen kept bragging about Garrett Popcorn Shops and told us we had to try it.

“Let’s do it!” I said.

We didn’t have much time before we had to be at the airport.

“I’ll pull up right in front of the shop and you and Anita can get the popcorn while we drive around,”  Karen said.

The plan was to be in and out of the shop and then on our way with the amazing popcorn we just had to try.

As Anita and I walked into the shop, I noticed it was empty. It was a perfect time to ask for samples. We had never been to Garrett’s and they had five different flavors to choose from. Anita pulled out her phone to FaceTime her daughter to ask what flavored popcorn she wanted.

As I was talking to the young lady behind the counter, a man walked into the store.

“Go ahead and help him. We are still not ready.”, I told her. The lady asked the man to go around us to the register to take his order.

“Excuse me”, he told Anita.

No response.

“Excuse me!”, he said again a bit louder.

“I’m sorry, she’s Deaf”, I said as I turned around and noticed Anita was focused on her phone with her daughter.

“Move!” he yelled.

“I just told you, she’s Deaf.” I said.

“Well, tell her to f&%$& move!”

I instantly froze.

I was upset and insulted with the man’s reaction. As I looked at Anita, I realized she still had no clue what was going on.

“You don’t need to be rude,” I said.

At that moment, I became angry.

I have a seven year old Deaf son and this is the ignorance he will have to deal with. Anita had been signing with her daughter the entire time. How did this man not think she may be Deaf? I had already tried to explain she was Deaf. Why would he decide to be so rude? How does anyone have the heart to treat someone this way?

My heart was immediately broken.

Not just for Anita, but for every Deaf or Hard of Hearing individual out here, including my Deaf son, Markie.

The man rudely got around Anita as he replied, “Its not my f&%$* fault she’s Deaf”.

I became very emotional and started to tear up. Anita looked up in confusion and asked what was going on. I briefly and quickly tried to explained to Anita, but the man continued to yell out comments. The security guard approached the man and asked him to calm down. The manager of the shop came out from behind.

To our surprise, the manager knew some signs. Not much, but enough to make Anita feel comfortable and take her order. All of the Garrett’s employees were kind and kept asking if we were okay. They showed compassion–and kept apologizing for the man they didn’t even know.

The man left the store, but he left me upset. I had heard many stories over the years, but I had never experienced anything like this myself. The incident didn’t involve me, but it involved my friend, my Deaf friend. Someone who has lived life being Deaf, someone just like my son. I am afraid for the day my son is mistreated simply because he couldn’t hear. The man was right. Anita being Deaf was not his fault, but it is not Anita’s fault either. Being Deaf may be a challenge in today’s society, but its not a bad thing. What is bad, is when someone thinks its okay to be disrespectful to someone simply because they are Deaf.

Yiesell Rayon, Director of Latino Support

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Katie McCarthy: Growing Up with Dual Identities

January 24, 2019

Today, I am a career-driven married woman, happily pursuing the little moments in life with a passion for human services, teaching, traveling, cooking and animals.

Ten years ago, I didn’t think it would even be possible to be married–and twenty years ago, I only had a glimpse into what life would be like for Deaf individuals.

Back then, I knew I could pursue any dream and I wanted to be a writer, however, I only met a few Deaf adults until college so I had a limited view of the opportunities that lay ahead as a Deaf individual. And back then, as a member of the LGBT community, my views were narrow, full of others’ fears and opinions thrust upon me, not my own happiness. Once I realized that I had to love myself first, that my worth and happiness were important and I was surrounded by people who saw me for who I was as a person, not my identities, my perceptions changed as I grew older.

When I was born, two identities were gifted to me. I was born profoundly Deaf, due to a premature birth, into a hearing family. I also realized I was not straight. Growing up with these two identities were honestly just like having two arms and legs, ten fingers and toes, green eyes, and a beating heart. I didn’t know any different inward. But outward, I realized quickly that growing up with dual identities was not simple. Many factors were at play – others’ opinions and social perceptions – and I had to navigate them.

I focused on growing up as a Deaf person first, and kept my second identity at bay for a long time. I thought it was impossible to grow up with two identities. It would be too much and people would look at me through different lenses if I revealed my second identity. And when that happened, I found I was still breathing. I survived. Many children and young adults do not (are not able to) speak up about it and feel safe in the process.

The five main things I would have told my younger self are:

1. Be gentle with yourself.
2. You are more resilient than you think.
3. Connect with those that you trust to be yourself with.
4. Meet others who are or have gone on similar journeys as yours.
5. Don’t change who you are for anyone else.

I want to tell these children and adults who grow up being Deaf and a member of the LGBT community – you are loved just as who you are. And I want to tell their parents that, even though it may feel overwhelming walking by your child through their identity journey when you may not have been on either yourself before you met your child, your child is just meant to be exactly who they are. Nurture the core of who they are, focus on the things they CAN do, meet other adults like them, and help them thrive. It is important to ensure the child is heard, understood and loved first, and then go through the journey with them, not above them.

Once I realized my worth, things naturally fell into place. I met my wife and we have a rich life together–full of laughter, faith and adventure. I have to pinch myself sometimes. How did I get so lucky? Then I realize immediately after, these two identities are a gift…and I embrace them wholly.

 

Katie McCarthy can be reached via karen@handsandvoices.org –she is willing to talk with families who have children with dual identities. 

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LaShawna Sims: Deaf with Autism

December 5, 2018

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

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The Journey of Acceptance

October 24, 2018

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.

 

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Autism or Hearing Difference? Tweezing out the Differences

May 4, 2018

By: Kristi Riley

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One of the big questions researchers have in the D/HH and autism world is, how do you tell the difference between hearing loss symptoms and autism symptoms? As a mom of a child with a severe hearing difference and a child with both mild autism and a mild hearing difference, I have gotten to see first hand what some of these differences may look like. I am in the process of earning my doctorate degree in clinical audiology at the University of Wisconsin-Madison. I am also a family trainee in the Wisconsin LEND Program (Leadership Education in Neurodevelopmental and Related Disabilities) at the Waisman Center, where I have learned about different developmental disabilities in children. I was recently trained through LEND on how to administer the ADOS. I have friends who are D/HH and friends who are on the autism spectrum. I can tell you for certainty that narrowing down the symptoms of hearing loss and the symptoms of autism is no walk in the park, and requires the subjective feedback from both parents who know the child best and the objective analysis of trained professionals.

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In 2012 when my daughter Lauralee was born, she failed her newborn hearing screening. Right away, we were whisked into bimonthly audiology appointments. Being music teachers at the time, my husband, Justin, and I were concerned not only about her ability to enjoy music, but her ability to gain access to language and literacy. If you can’t hear, you can’t speak. If you can’t speak, you can’t read. If you can’t read, then just about every subject that crosses your path is affected. (Who cares about aspirations of Julliard!) Learning to talk, read, then write affects every single subject in school. Lauralee was not officially diagnosed until 6 months old. She did not get her first pair of hearing aids until she was 11 months old. We were worried about her language development.

Lauralee has always been very alert and interactive. She has always made good eye contact and loved to play. She is goofy and is such a joy to be around. Even though she did gain the stereotypical “mama and dada” babble in the first few months, she mostly talked with her facial expressions. I decided to get the Signing Time DVDs, and she and I soaked-up sign language. It was like we had our own “secret language”. I always felt like we had a deep connection. Sometimes, I seriously questioned whether she was truly deaf or if it was all a big mistake!

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In 2014 (right after I started my path to audiology), we had our son, Oliver. He was such a beautiful baby and I was ecstatic to find out he passed his newborn hearing screening. Even though he had a short NICU stay after he was born, he ultimately seemed healthy in every way. When we brought him home, right away I noticed he was a little different from Lauralee. He was fussier and cried a lot. I chalked it up to being a different personality. Besides, I was a fussy kid too! I’ll never forget, at around 7 weeks, I was holding Oliver in my lap attempting to do face time. He would not look at me nor smile. He seemed so disconnected. I would force my face into his gaze until I got a reaction. But ultimately, I did not connect with him like Lauralee. I felt guilty.

When Oliver was about 3 or 4 months old I started subbing at a local daycare. Oliver stayed in the infant room while Lauralee was in the 2-year-old room. Lauralee was immediately the “favorite friend”. Kids would follow her around because she was so expressive and out-going. She caught-up academically and knew all her letters and sounds by the time she was 3. Oliver, on the other hand, was making minimal progress. He had little ticks like “twinkle hands” when he was curious, leg tensing and screaming when he was excited, and head shaking when he was bored. He did not learn to sit until he was over 10 months old.

When Oliver was around 12 months old, I contacted birth-to-3 about my concerns. He started receiving OT services right away. Weeks went by and Oliver did not learn to walk. He resisted every idea the therapist had. One night while crying my eyes out, my husband told me about this place called the Wisconsin Early Autism Project. I doubted autism because Oliver was gaining language and had okay eye contact but I went along with the idea just in case…

Two summers ago, I realized Oliver was saying “what?” a lot. Sometimes he would ignore me all together. He had not yet started autism therapy, and I wondered if it was his hearing. On a last ditch effort to prove it was NOT autism but something else, I asked my professor if we could test him. She agreed.

Testing day was a nightmare and an absolute embarrassment. Oliver screamed bloody murder in the sound booth and was ultimately untrainable. We waited six months and got a few frequencies. We waited another couple of months and got a few more frequencies- my professor is amazing! Ultimately, it looked like Oliver DID have a mild hearing loss in one ear (which newborn screenings do not catch). (YESSS!) We confirmed objectively through ABR over the summer. Even though he had a mild loss, my professor made the point that the loss would not affect his language development nor his behavior. The autism diagnosis stuck. (Darn.)

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I have finally come to terms with Oliver’s diagnosis. I don’t know why it took me so long. Maybe because there is a stigma about autism or a stigma about children with “poor behavior”. Lauralee made me feel like an amazing mom. Oliver challenges me every step of the way. Looking back, there’s no doubt Oliver has the right diagnosis. And to tell you the truth, he’s a good little boy.

Both autism disorder and hearing disorders are a spectrum. Every case is different. Someone could have the exact same audiogram as Lauralee but be affected more. There is so many intricate connections between the peripheral hearing system and the cortical synapses in the brain where hearing and cognition happen that something could go haywire at any point along the auditory pathway. Some one could have mild autism like Oliver but have a completely different set of abilities or behaviors affecting everyday life. Because of all these factors, it’s hard to truly come up with a set of “symptoms” that separate autism and hearing differences.

Maybe rather than separating the disabilities as two separate entities, maybe hearing loss is a symptom of autism. Autism on a basic level is caused by sensory wiring differences in the brain. There have been several studies showing the autistic auditory pathway is wired differently from the neuro-typical pathway. Perhaps hearing differences, whether peripheral or cortical, are a common symptom of autism. But the social insufficiencies that are commonly associated with autism do not translate to a person with deafness.

People who are deaf but given adequate language access through sign or otherwise, develop socially normal. Yes, a person may have to grab their attention differently but ultimately a deaf person is very socially aware. Autism can make a person seem “deaf” because they lack social cues like eye-contact and quick verbal responses. Neuro-typical people with deafness do not lack these social differences when given the chance to communicate. You can see it clearly in my children, but we are only one example on the entire spectrum.

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The Cornerstone of Parent Choice

April 2, 2018
Most recently, we have been asked to clarify our position on parent choice. Supporting parents in making their own informed choices for the child they know best is central to everything we do.
 
The Cornerstone of Parent Choice
By Karen Putz,
Co-Director of Deaf/Hard of Hearing Infusion
Hands & Voices
 
In my very first job right out of college, I informally took on the role of being a mentor to a family with a toddler who was deaf. I had no formal training, other than my own experience of growing up hard of hearing, becoming deaf as a teen, and learning American Sign Language shortly after. That first experience of working with families was so enjoyable for both the family and for me that I began to get calls from more and more families. I happily provided mentoring support, even though my primary job was structured toward independent living for teens and adults.
 
Then I got a call that would change my life and eventually lead me formally down the path of parent support…
 
A mom called to ask for support services and resources. She had just found out her six-month old daughter was deaf. I debated whether to take the appointment, for I had just turned in my resignation letter to stay home with my own newborn baby. Since the family lived near my home, I took the appointment.
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I ended up mentoring that family on my own out of sheer passion for the work. We held sign classes in her home and the neighbors joined in. We mentored other families together. In an ironic twist, this mom was also there to support me when my toddler became profoundly deaf two years later. It was that moment that my journey became personal–now I was the mom of a deaf kid. Everything shifted in the way I provided support from that point on, because I was now walking down the parenting path with my own experiences. My husband and I were now facing the process of choices and decisions we had to make for our child (and the two that followed).
 
And that changed everything.
 
As a parent, we are responsible for all kinds of decisions for our children. My husband and I soon learned that NOT making a decision was a decision in itself–and we had to own the consequences of that path as well.
 
In 2004, I stumbled upon Hands & Voices while putting together a website for parents in Illinois. The minute I read the description of the organization, I knew it was a fit for our family.
 
Who are we? We are parents of ASL signers, cued speech users…. parents of kids with cochlear implants or total communicators… we are people who have common interests connected through the community of deafness. Hands & Voices is a safe place to explore options, get unemotional support (although we can be emotional about it!), learn from one another and share what we have in common. We value diversity and honor the role of parents and family as the single greatest factor in raising a WASK (our favorite acronym: Well-Adjusted Successful Kid).
 
“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.”
 
Hands & Voices is a nonprofit, parent-driven organization dedicated to supporting families of children who are deaf or hard of hearing. We are non-biased about communication methodologies and believe that families can make the best choices for their child if they have access to good information and support.
 
Everything about the organization matched what I felt was most needed. Parent choice. Support for diverse communication options. Coming together for common causes. Support by parents for parents on the parenting journey.
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It is now many years later; my kids are now young adults. I’ve been a board member, a founder of a state Hands & Voices chapter (along with the parent I previously mentored), and I am now working as staff. Through the years, we’ve remained steadfast in our mission and vision to provide support to parents on the journey. We work with a diverse group of parents from all walks of life and all different stages of their journey.
 
From time to time, we are asked for our position on a variety of topics. Most recently, we have been asked to clarify our position on parent choice. Supporting parents in making their own informed choices for the child they know best is central to everything we do. When it comes to the parent’s right to choose, we stand firmly behind this concept:
 
Parents not only have the right to choose language and communication modality for their child who is deaf or hard of hearing, they have the ethical, legal and moral obligation to do so. Furthermore, the research proves that the single greatest indicator of a DHH child’s eventual success—regardless of which mode or method of communication is used—is the meaningful involvement of his or her parents. The goal is to make that involvement authentic, effective and informed by the wisdom that so many have to share from direct experience…parent-to-parent, deaf or hard of hearing adult to parent, and professional to parent.
 
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The parenting journey is filled with twists and turns. As a mom of three kids, I’ve experienced this firsthand. As a Deaf Mentor in early intervention, I’ve had the honor of being a part of a family’s journey often from the beginning. As a staff person with Hands & Voices, I’ve had the opportunity to work with a variety of families negotiating this journey around the world. I’ve seen it time and time again–even in the midst of difficult situations and trying times–there’s so much more that unites us than divides us. We must continue to focus on the common goal: building an informed community surrounding parents so they can nurture the seed of potential in every child.
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Jordan Livingston: Becoming a Pilot

March 22, 2018

jordan livingston pilot

Jordan Livingston has a dream: he wants to become a commercial pilot, aviation safety officer, and a flight instructor. And he’s well on his way!

Jordan was born deaf and from a very young age, he dreamed of flying. Both of his parents worked in the aviation industry so Jordan grew up around planes. He obtained his pilot’s license in high school and interned at Southwest Airlines. He’s currently on a quest to complete his education and obtain the aviation hours necessary to certify him to fly commercially.

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Take a moment to watch this Hands & Voices interview with Jordan and learn how he’s blazing through the barriers to become a commercial pilot:

 

An article on Jordan: Deafness Doesn’t Ground Aspiring Pilot 

Jordan’s experience at Southwest Airlines:  Southwest Intern is Defying the Odds to Become a Pilot 

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Kathy Loo: Learning What is Best for My Son

June 26, 2017

Growing up, I never saw myself being the parent of a deaf child. Although my mom and brother are hard of hearing, it was never more to me than just part of  who they were. It wasn’t even that big a deal in my household.

The only deaf person I recall knowing aside from them was a friend from high school.  But again, it was just part of who he was.

We didn’t even think much about deafness until we started learning sign as a communication bridge for our youngest children. We started learning to sign when our oldest daughter was one year old and I was about 4 months pregnant with our youngest.

After we started learning we wanted to know more. We became involved in a deaf ministry near our home and started taking classes through Sacramento State.

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Little did we know, it would lead us to deaf adoption–and three years ago we brought home our son. Lots of time during our adoption process was invested in trying to figure out what was right for us. Everyone had an opinion. We even had some strong ones of our own, but that all changed the day we met him.

Suddenly it wasn’t about what was best for us, but what was best for him. It wasn’t about what we envisioned, but the potential we saw in him. Our first night with him he was so starved for communication that he soaked up around 65 signs.It was impressive  the amount of language he  gained in those first two weeks, after 8 years of minimal language.

At some point early on with us he discovered there were two worlds going on around him. Until he saw us signing with him and talking with each other, I don’t think he realized that sound actually existed.

He became enamored with the concept of sound and discovering how it works.

At that point we began to question our own biases. This was all unraveling as we watched a friend struggling with outside opinions of her son getting implanted. Was that a battle we even wanted to tackle?

We realized that no one had to answer to him but us, about what tools and opportunities we did and didn’t provide. We decided that any issue someone had based on a choice we felt was right for our child was not our problem, but theirs.

We opted for the implant and he was well on his way to discovering a world with sound. Unfortunately,  it malfunctioned a few months in, despite every effort to correct it.

We’ve since opted to do a 2nd surgery to see if replacing the internal equipment will correct the issue. We are optimistic, but no matter what we know we can stand before him and say “The only thoughts that mattered were yours. We followed your lead.”

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The most important things we’ve learned through this whole journey are:

  1. That WE are the experts in our child. No one else has been assigned the duty to love and care for him and provide his physical,  mental, emotional, and linguistic needs.

  2. It is important to surround yourself with people who support, love, respect, and understand you. Even if those people haven’t or wouldn’t make the same choices for their child that you would. They fully understand that you have the most skin in this game. No matter what, as parents we always do the best we know how and we will never get it perfect.  Despite what others think, no one has a perfect answer for raising ANY child.

  3. Every child is different. Even if they are in the same household.

Remember, we started signing with our oldest daughter. At the time, she was believed to have normal hearing. That has since come under question in the last year. The supports we provide for her aren’t the same as for our son.

There is no one size fits all. They have completely different needs and what would work for one isn’t as helpful (if at all helpful) for the other.

I encourage you to stay strong, be your child’s loudest advocate, and know that it is okay if you switch gears or make mistakes.

As parents of deaf children, we face challenges that most other people don’t have to consider in everyday life. The only thing we can really do right is to give it our all and hope for the best. Most of all, know that your best is going to be different from someone else’s and that’s okay. 20160131_142735-1

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Rhonda Bergsma: And This Was the Easy Part

December 22, 2016

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It was a frosty morning that April in 1982, the middle of the month– you’d think it would be warming up here in the Pacific Northwest. But maybe it was my nerves that was sending chills thru my body. We arrived at the Hospital early in the morning to get my labor started. This was my third baby and both previous births were not easy.  I was a bit nervous.

All settled in and ready to go, here we go , one more time, I can do it. This was me self-talking my way thru this ordeal called giving birth. The nurse came in to hook up the drug that would get my labor going, a must since my “water” broke the day before. In those days most people never knew if they were having a boy or girl, but then it really didn’t matter to us since this baby would have a brother who was 5 years older and a sister who was 3 1/2 years older.

To fast forward over all the gory details, labor was extremely hard but not too long, about 8 hours from start to finish. After much struggle, baby boy Bergsma was born. I noticed that all the doctors jumped up and looked concern at the moment of birth. I was so exhausted I could barely whisper “what’s wrong?”

“Nothing,” said the doctor.

But I noticed the umbilical cord was tightly wrapped around the baby’s neck and he was not breathing. He looked very pale and limp, dead-like really. After all that work, was he even alive?  It seemed like an hour went by but I’m quite sure it was only 20 seconds when I heard a wonderful newborn cry.

Whew.

As I looked over at him, he was nice size–I thought, maybe 9 pounds.

I was close he was 8lbs 14 oz and doing pretty well by now. Andy and I were ready to introduce Mitchel Kent Bergsma.
At home, Mitch was spoiled by his sister who loved to sit and hold him. He was a very good baby.  I didn’t know what a good baby was like since both his older brother Tyler and sister Tandi were always crying. They cried so much I didn’t know if I could handle another baby who cried. The first week we are doing good, no crying, and on we went , no crying.

I can’t remember exactly when I took Mitch to the doctor in concern. I laid baby Mitchie on the table and said, “There. Take a look at him, something must be wrong.”

Dr Johnson, our kids’ pediatrician, looked at the baby and said, “What’s wrong?

I told him it’s been months and I’ve not heard him cry yet, so something must be wrong with him. The doctor took the baby and checked him out thoroughly. He turned to me and said, “Well, I’m not sure what to tell you.”

I knew it, I thought, something is wrong!

“I think you have a good baby this time” and then he smiled.

I think I actually cried, never had I actually enjoyed the newborn stage of my other two babies because they cried all day. At this point I don’t actually believe it to be true but I went home and told my husband what the doctor said.
Baby Mitchie was such a good baby that he would sleep 12 hours at night and take a couple very long naps during the day. When he was awake he was always happy. He seemed a bit different though and I chalked it up to being such a good baby. And remember, we had never experienced this up till now.  He was extremely visual, he would watch and copy facial expressions, if you smiled big at him he would do the same back to you with his two huge dimples.

As he lay in the little seat on the table he made such a loud noise that we all covered our ears. It was a weird sound coming out of a small baby I thought. But I had a good baby this time and that’s what they are like I  guess. Looking back, I now know different but at the time, that’s what I thought.
Baby Mitchie was a very huggable baby, so lovable and very happy, always smiling. I can’t really ever say I remember him crabby or crying. When he was around 8 months old when I carried him in my arms he would always put his hand on my throat when I would talk. He did such cute things, so different from his brother and sister.
One time we left him with my sister and her family when he was around 15 months old.  It was over the Fourth of July and they took him to a fireworks show. My sister mentioned that he sat the whole time with his eyes shut and seemed scared. It seemed that whenever he was scared or not sure of what was happening he would just shut down and close his eyes. Months later we know why he behaved that way, but it seemed odd at the time.

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Months went by, he was still a good baby, but now I’m noticing that he seems to look me in the face and follow my expression but doesn’t really respond to anything I say to him. If I would say “Daddy’s home” and by this close to a year old he should understand some of what I’m saying and respond to me. Sometime he wouldn’t even look at me when I’d talk to him. Again I thought was he just good-natured or a bit odd? Actually I hate to say this but I did think at one point that maybe he just wasn’t very bright.

It was time for his 9 month check up. One thing I really liked about Dr David Johnson was that he never rushed thru the visit, he would sit and listen to any concerns I had. He didn’t disappoint this time either. The doctor asked how everything was going, I hesitated to say this, but I had to get my concern out

“I think maybe this baby is not very smart.”

Doctor J. sat down next to me and said   “Well, tell me about it, why do you say that?”

I went on to tell him how the baby ignored me when I was trying to get his attention or how he didn’t respond to me correctly.

The doctor thought for a few minutes, and said, “Maybe he doesn’t hear you.”

Doesn’t hear me I thought? What, everyone hears, especially babies. After some thought I said, “Okay, then maybe he needs tubes in his ears, I hear that fixes most babies ear problems?”

“Well…” The doctor looked through his files.  “He hasn’t had any ear infections. So that’s not the problem.”

My mind was running wild.  What!? Doesn’t hear me! What, everyone hears!  What’s happening here?  The doctor said to go home, talk to my husband Andy, think about it and come back in a few months for the next check up and we’ll see what we think then.

As I am driving home, I can’t stop thinking about it and it is starting to come together.  After talking it through with Mitch’s dad, it didn’t take long for us to realize that its possible that Mitch doesn’t hear. I am thinking of all the things that were different: the strange noises he made, so loud we covered our ears and he made weird little noises in his throat, and always focusing on our faces.

I put me hand on my own throat, as Mitch always did, then made a sound.  Oh man, it hit me, he was feeling my voice!  Now I get it, he would feel my voice and then look me in the face. He liked the vibration in my throat. He knew something was happening, he was a smart baby, so very smart, really!  At such a young age he was already adapting! I think he was figuring out his surroundings in his own way and learning to deal with them.
That night, Andy and I were going over all the details of this baby’s short life so far and all the ways and funny things he did differently than the other two kids. We knew that night, we might have a deaf baby. We bonded together and decided that we would find out everything we could so we would know how to help this truly delightful baby.
I can look back today and say we never had the dreaded “why us” thoughts. We had hard times and a new path to fight through but seldom a pity us syndrome. We thanked God for that first wonderful year of Mitch’s life without the wonder of something being wrong.
And this was the easy part….

Half Full or Half Empty? 

Of course there were times we wanted to have a pity-party about having a deaf child. Not often, but it did happen. The sadness of something that never will be, things that we love that he will never have the opportunity to hear, like music, birds chirping. Things, I thought at the time, he would never be able to do; drive a car, go into a store alone and function alone in this big world. The dangers are everywhere for a deaf child. I didn’t really know any deaf kids or families for that matter so this whole deal was new to us. We had no knowledge or experience; what we should or shouldn’t do. But then it’s that way with every parent, but at least your family can guide you along. This was a whole new world for us and we were going to just have to “wing it.”

Luckily we had a very happy child, he only knows his life as it is; not as it could have been.

When Mitch was around 6 years old. our family went camping at a Washington State Park. That summer they had a few ponies for the kids to ride. We rented a pony for the kids. Mitch’s brother  Tyler and sister Tandi didn’t want to ride one, but Mitch sure did. He climbed up and of course they only let you ride it in a circle with the owner holding tight. Mitch loved every minute of it!

Then this little girl and her mom came up to ride a pony. The girl was blind and as they put her in the saddle, her mom described the pony to her. She told her the pony was black and guided her hand around his mane and head as she petted him. The mom was really good with her. We stood back in awe, as the complete opposite was happening right before us from what were experiencing with Mitch.

On one pony there was a deaf child and the other pony was a blind child; who has more of disadvantage?

Mitch couldn’t hear the clip clop of the hooves, the sounds the pony makes; snorts, whining, the owner talking to the pony. But he could see the color, he knew what black was and what the horse looked like, how tall it was, the coarseness of its hair as it flew up in the wind, the fullness of its mane, its big beautiful eyes and eyelashes. I don’t remember her name, but this little girl could hear the sounds; the snorts, the whining, the clip clop, the owner as she guided the pony around the circle. But she has no idea that the color black is very dark, what the actual animal looks like, where she was riding or who is even guiding her. She must have so much trust in those around her.

We told Mitch the little girl couldn’t see, and her mom told her  daughter  there was a little boy on the other pony that couldn’t hear. She could hear us talk but not see us sign to Mitch. Her mom explained how we used our hands to talk to him. Mitch was fascinated by her and the fact she couldn’t see and wondered why. And she was just as fascinated about him. He just couldn’t imagine not seeing, and she couldn’t imagine not hearing. They both asked why the other couldn’t hear or see.

It was an experience I will never forget; who was better off, who has the advantage? I’m sure each thought they were the one better off. As most of us enjoy both  sight and sound, our glass is half full, is theirs also half  full or is it half empty. If you asked each one of them today they would probably say they are the lucky one. She was so happy to hear her mom’s voice and the noises around her and Mitch was really happy he could see the things around him.

One day, Mitch told his dad he wanted to play hockey. He was around 10 years old at the time.

“Hockey!” we said. “Why? Why would you want to do that?”

But Mitch was very insistent, so  Mitch’s dad and uncle George took him to a Canucks game in Canada one day. Mitch came home even more excited to play. We signed him up at the local arena, bought all his gear. Then we realized that he has never been on the ice, what if he hates it or can’t skate? Too late now, we are $500 deep into this thing. He is playing even if he hates it.

Well, on his first day on the ice, he came to me and said, “Mom, you can’t know the feeling, its like floating!” He was hooked. He took to skating like he’d done it for years. I think he played for 6 years then it became a whole different game, more serious.

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By this time, Mitch was more interested in water sports. I always say he went from solid to liquid; ice to water. One of his high school friends had a wakeboard boat  and Mitch would go every weekend. He found a new love in this sport. He did seem to excel at this sport too. He would go on to be very skilled on the water, but in Washington the summers are short and only a couple of months of warm enough weather.Then his friend and family moved back to Colorado.

When Mitch was around 20 he decided to move to Colorado to live with his friend and his family so he could get away from our small town and get back on the wakeboard. I didn’t think he would actually do it as he had never driven a car to the next town let alone across the country. And now he was talking about driving his car and pulling a U-Haul trailer with all his motorcycles in it across  5 states to Colorado. He must be nuts!

The night before he left, I was in absolute disbelief and utter stock. I cried like a baby, worried myself absolutely sick, literally shook with fear and really thought I would never see him again. Had we prepared him enough for the world?  The things he might come in contact with were too much for me to bear. What if he gets lost, or an accident? How can I stop him from going?

Mitch was not afraid. He was totally prepared, with his laptop in the car with his journey all mapped out and every stop tagged. He knew what he was doing and where he was going and why. I was forced to trust him at this point and let go. My husband Andy didn’t seem to have the reservations and fears that I did. He assured me that he would be fine.

Well morning came, I had cried all night.  Mitch loaded up his car and drove away with me filling a river with tears. He said to me, as he stood in the driveway, “Do you want me to stay here forever or go live my life?”

(I have to say this is the only time that I tried to use the “deaf card.”) “Mitch! Did you forget you’re deaf?”

This sent him in a laughing fit and he assured me that he would be fine, and that I can stay in constant contact with him along the way. Which I did.

(Mitch took up competition and became a wakeboard pro. Check out his skills:

A YouTube Star is Born

Today, as I look back on this, I can be so thankful that his glass was half full and that Mitch was willing to step outside the safe box, go explore the world. He was full of life and wanted to experience so many things and adventures away from the safety net of home. But at that time I gained a few gray hairs and shed a bucket of tears. My husband would remind me that’s how we raised him and not to try to hold him back now. But at that moment, I sure regretted the independence we instilled in him.

Mitch started creating YouTube videos and all of a sudden, he attracted a large audience.  Mitch’s success on YouTube and notoriety around the world really gave him even more richness in his life. For some reason it seems to be “cool” that he is deaf. Would he have had the appeal if he was hearing? He found an outlet in this digital world to really explore his talents in videography, bring it to the world and actually make money doing it. We bought him a video camera for high school graduation because he loved photography. We had no idea he had the “eye”. He told me he did when he was younger but I didn’t really believe him.  So many doors have opened for him because he has explored this avenue.

When I traveled to Brussels with Mitch in the summer of 2014, while he was there producing a commercial, just the sounds of the languages around me were fascinating. One day at lunchtime we decided to go to the “Grand Place”  at an outside cafe. I wanted to sit next to this park-like spot because this young lady was there playing a song beautifully by Andrea Bocelli on her flute. When Bocelli sings it just makes me stop everything and listen, it romantically represents Europe to me for some reason.   Mitch asked me why I wanted to sit there and I responded that the music was so beautiful that I wanted to listen to it. He looked at me and shook his head like he understood but really he has no idea how music can speak to your soul. When I returned to work after that trip I teared up as I was telling one of my co-workers how the music that day really touched me, and how much I love music, the sad fact that he just doesn’t get the same enjoyment from it and never will. But in respect to that; sign language is a feast for the eyes, it lays out the story and transcends you into the mood and right into the song. I have a hard time watching someone signing a song and not tearing up. The movements just become the words and they paint the story so beautifully. There are times when I can’t help but sign when listening to a song, to me a song is complete when the beauty of sign language is added. A beautiful replacement for sound.

Mitch is definitely living his life to the fullest. He is now married. He still has a long list of countries to visit and things to experience  but he has done more to date than I ever expected from him in his whole life.  My view of success for a deaf child in adulthood was a job, an apartment, a car and hopefully someone to love. To date he can check all those boxes…and more.

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How do we make sure our deaf kids view the glass as half-full? I don’t have any great answers but it seems to me that experiences are what fill up that glass. We were lucky that we had a child who wanted to explore and experience life to its fullest. I think this is to be encouraged–not just our deaf kids–but all kids.

 

Rhonda Bergsma

Follow her on her blog, Deaf-initely Mitch

 

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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.

 

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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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