Raising a Deaf or Hard of Hearing Child

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

In-between Two Worlds – Our Journey with Progressive Hearing Loss

It is hard to believe that it has been 6 1/2 years since we first received our daughter’s diagnosis of hearing loss. I still remember the fear that washed over me, suddenly feeling unequipped to be her mom. I had never known a Deaf person, I didn’t know ASL, what do we do next?

At age three, we had her fitted for her first hearing aid, enrolled her in the Special Education Preschool in our district, and met with an ENT and geneticist to see if we could see what was causing her hearing loss. Just as we were settling in to our “new normal,” we found out our daughter has Pendred Syndrome, which is characterized by progressive hearing loss and possible Goiter that presents in early adulthood.

We have had our ups and downs with the diagnosis. The first audiogram that showed a significant increase in loss was a hard reminder of what our future held. Our “new normal” was always going to be changing. We were always going to be adapting, and making adjustments.

By kindergarten, she was in a mainstream classroom and excelling across the board. Her personality is infectious and she made friends wherever she went. She educates her peers on her hearing loss, and has become a strong advocate for herself.

It wasn’t until her brother was born that the issues with progressive hearing loss started to present. Our son, while a carrier for Pendred Syndrome, does not have hearing loss. My daughter was heartbroken. At first she didn’t want him to have it, but as we awaited the results, she was hoping for someone like her. She so desperately wanted to teach her brother about hearing loss, make hearing aid charms for him, and “have someone in the family like ‘her’.”

At that moment, she burst into tears, letting her emotions spill out. She was scared of losing her hearing, and losing everything she had known for the last 6 years. She was scared of losing her friends, but also feeling lonely having only met one other person with hearing loss.

Trying to find groups to join proved difficult. Family ASL classes were hard to come by. As a family, we felt most of our resources kept us in, isolated from both worlds. Eventually I was able to join some social media groups, but many recommendations didn’t really consider my daughter’s situation. She was deaf, but she had some of her hearing. She had her feet in two worlds.

During a third grade project, she had an amazing opportunity to interview one of her role models, Dame Evelyn Glennie. Evelyn is a world renowned solo concert percussionist who is not only deaf, but lost her hearing at age 12. It was a moment that will stay with my daughter forever. The opportunity boosted her self-confidence, and you could see the smile wash over her just to be talking to somebody like her. Not only was Evelyn deaf, but she knew what it was like to hear before her hearing went completely. She opened my daughter’s eyes to different ways of hearing, and for a time, removed the fear she was feeling about losing all of her hearing.

Fast forward to today, my nine year old fourth grader is in a new district, doing well, but facing new obstacles. She is the new kid at school AND she is deaf. These kids have not known her since kindergarten, and they don’t always know how to interact with her, even though it is the same as they would with anybody. Her sadness and exhaustion comes through more days than before.

Friendships take time, they thrive on common threads, and it has been this process of forming new friendships that has made her differences stand out to her. She has cried often, feeling alone, missing her old friends, and scared of when her hearing will go completely. It has rekindled the need and the drive to find deaf friends, to become more involved with Deaf culture, and to become fluent in ASL.

At times, it feels very lonely. The advice we often get is either “make her get a cochlear implant” or “you need to put her in a Deaf school.” It is always black or white, but Addie is deaf AND (for the time being) she is hearing.

We are working hard to prepare for the future, learning ASL, and at times it is uncomfortable. Though we are always welcomed warmly, we sometimes feel like outsiders at DHH events as we are still beginning to learn ASL. We also feel like our daughter’s hearing loss can be forgotten when we are in the hearing world and have to look for accommodations so that our daughter does not miss out on experiences.

I often wonder what her relationships in the future will look like. Will any of her hearing friends learn ASL? What will family functions look like? What is going to change and how will she feel with the inevitable changes? The waiting and wondering drives a lot of conversations in our household, and ultimately is basis for a lot of decision making.

Fortunately, we are in an amazing school district that houses the DHH middle and high schools. We have been able to attend a few Family ASL classes, and have joined a parent support group. While we are very excited as a family, the whole process has highlighted the middle area that we fall in. The DHH program sounds AMAZING, and while my husband and I are very excited about it, our daughter is not. She is conflicted. She wants to make friends like her, but she also doesn’t want to leave her hearing friends again.

It feels like a constant struggle. When are we being good parents and letting her have a voice? When is it neglecting her needs? I imagine the conversation will get slightly easier as we get better at ASL and can submerge ourselves in the Deaf community more. For now, we feel like outsiders of both worlds, and are desperately trying to find the best way to blend the two for our situation.

Amanda Case

Visit Amanda and her daughter’s Hear with the Heart shop (Hearing aid charms)

Amanda’s blog: Hear with the Heart

Today was the day.

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

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

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

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

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

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

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

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

Marbely Barahona

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

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

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

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

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

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

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

LaShawna Sims, Bilingual Southern Nevada Regional Guide

Nevada Hands & Voices

Raising kids is hard. Add a diagnosis of hearing loss and you might find yourself thinking parenting is not for the faint of heart.

My children were born with needs categorized as “special.” They look like typical kids (with the exception of their devices) but they don’t hear like those with natural hearing.

Understanding and information are key.

Some things I recommend people avoid saying to a parent:

• My child also uses selective hearing.

Most people want to make you feel normal, only a hearing child’s experience is not the same as one who is deaf.  Sure, all kids use selective hearing from time-to-time, but kids with hearing loss experience sound much different.

According to an article written in Central Institute for the Deaf by Karen Anderson, PhD., when researchers examined fatigue in children with hearing loss they found that children reported a greater level of fatigue than those with typical hearing.

She goes on to say kids with hearing loss also exert more effort during listening tasks than their typically-hearing peers. Any degree of hearing loss, with or without amplification, requires a greater effort.

• I could never do what you do.

There are days I feel like I can’t do it or don’t want to do it. Only, that’s not an option. Throughout the years I have had moments I wished things were different. But, then I remember—this is us. And I wouldn’t change it.

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.

The Cue Sign Movement: Sign Language + Cued Speech = Love

by Lisa Ann Weiss, Esq.

Before you click through to the next thing or toss this aside, please just read the whole thing through.  I am writing this because it is important to me to share my perspective with you.  I promise it will only take a few minutes of your time and it may be important for you or someone you love.

For more than a decade I have shared my deaf story.  Yes.  I have a deaf story, even though I am hearing.  I have a deaf child and this automatically gives me story rights.  I will not entertain any arguments about that.

Most of the time what interests people about my deaf story is that I chose to learn a visual mode of communication that is not sign language.  In 2004 when I realized that my 2 ½ year old child was deaf I read a book called “Choices In Deafness” by Sue Schwartz.   As I have explained almost every time I’ve shared my story, that book was when I first learned that there were choices. Until then I assumed that all deaf people signed.  From the beginning I have always believed in whatever choice works, at any time and in any situation.  What I have learned is that the situations are constantly changing and it is beneficial to have lots of options.

My child is a native cuer because I learned Cued Speech first.   I also chose to give my child cochlear implants and an education in listening and spoken language, so my child uses spoken English.  I have always known that my child would sign at some point and that I would also learn sign.

From my perspective, deaf stories oftentimes involve a lack of connection.  Certainly, that has been my experience.  My family has attended Cued Speech camps since 2005. I am grateful for them.  My whole family appreciates them.  It is one of the few times we feel connected to a larger community and are able to really improve our family’s communication skills.  I have always longed for a larger community.

My high schooler and I attended the first Cue Sign Summit that was held at Gallaudet University in June 2018.  It was intended to broaden the community of people who communicate who use ASL and Cued Speech.  There was instruction in all levels of Cued Speech and ASL, as well as four days of opportunities to interact and learn the latest research and about people’s experiences.  When we arrived, my 16 year old knew slightly more sign than I did, which was essentially none.  There were roughly 60 people at the four day event, all with varying levels of fluency in Cued Speech and ASL.  What I experienced at Cue Sign Summit is a broadening my deaf experience I have been yearning for.  I don’t believe I am the only person who feels this way and I don’t believe it is specific to me being a cuer.

ASL and Cued Speech sitting in a Tree, K-I-S-S-I-N-G.  First comes love.  Then comes connection, understanding, and respect for one another.  Then comes a whole new community of people who are happier, healthier, and united.  Okay.  So I’ve changed the words.  Plus it doesn’t rhyme at all.  But this what I see.  My child has now enrolled at a deaf school where they only teach in ASL.  The people at this school are welcoming my native cuer with their minds and arms wide open.

(By the way, this isn’t an article about how to get your child into a deaf university or any university. It’s about a moment as a parent when you consider the future – the unknown – and your course changes a little bit. A little bit for the better.)

By Scott Smith, Nebraska H&V

My wife or I have been on the Nebraska Chapter’s Board for a few years now. Back in 2016, we decided to go to the Leadership Conference in Estes Park, Colorado. We networked with people from all over the Midwest and from all over the country: parents, deaf adults, medical professionals, and teaching professionals. It was great. They covered all manner of topics from technical updates, to building stronger Chapters, to legislative highlights, to restorative self-care classes, and yes, there were some touching moments that pulled a few tears.

Let me stop a moment and say, if you are reading this, you are likely a member or are supporting Hands & Voices. (Soapbox: On) Consider becoming involved with your local board of directors. These are usually a bunch of cool parents, cool professionals and cool deaf adults that want to help other parents of deaf and hard of hearing children in some of the unique challenges we face from day to day. Someday you will have the opportunity to go to an amazing event like the Leadership Conference. It will have a positive affect on you as a parent. (Soapbox: off).

Disclaimer: I am not cool.

We started this journey when our son was born hard-of-hearing in 2007. Due to trauma during his birth, some of his fine motor skills in his legs, arms, including his finger and hand muscles and some of those in his lips and tongue are affected. Like all of our children, Charlie is a blessing and has changed our lives in wonderful ways. But for Charlie, and even for our other three children, we don’t know what the future holds.

During one of the breaks at the conference I walked through a hall of exhibitors on my way to the snack table. “What is that?” There was a booth for Gallaudet University and the National Technical Institute for the Deaf at the Rochester Institute for Technology was also there. After a few minutes talking to the representatives, I got to thinking about college. I had never thought about college for Charlie. Well, let’s just say we hadn’t spent a ton of time thinking that far ahead. (By the way, this isn’t an article about how to get your child into a deaf university or any university. It’s about a moment as a parent when you consider the future–the unknown–and your course changes a little bit. A little bit for the better.)

Like I said earlier, we don’t know what the future holds for our kids. I’ll be honest; I was more worried about Charlie graduating from high school. On the way home from the conference, I was really in my head. “What can I do? What more can I do?” My wife and I work full time, which sometimes require travel and extra hours. We also have three other children. I am blessed to work for an employer that gave me the opportunity to go from a 40-hour work week to a 32-hour work week. First off, shaving 20% off the family budget was difficult. But it gave me the time to become more familiar with Charlie’s school friends, school staff and curriculum.

A friend was teaching a chess club for third through sixth-graders at Charlie’s school, and asked if I could assist. I know more about Gallaudet than I do about chess, which means “not much”. I said, “Sure. Can Charlie join?” He said yes, and two weeks later, I was helping teach chess and chess-related signs once a week to students in the club. In the spring of 2018, Charlie played in a school chess tournament and had a 2-1-1 record and did pretty well. He wants to play again this year. That probably wouldn’t have happened if we hadn’t thought about working toward college and taking the leap to lower my work hours.

Next year, Charlie transitions from elementary to middle school. Our department of education closed our Nebraska School for the Deaf many years ago. We are faced with various blends of mainstreaming through middle and high school. As parents, we do not feel Charlie will have much success with this approach. So our next big adventure may be obtaining residency in a state that has a school for the deaf. Maybe in six years, I’ll write an article on how to get your Deaf Plus child into college. In the meantime, I look forward to the moments that will change the course of my family’s life a little bit, just like the Leadership Conference did for me. Those moments opened a multitude of doors that have provided experiences for Charlie and me that we never would have had…experiences that make the unknowns ahead less daunting.

The road we travel TOGETHER: Our Family Journey

By Rosabel O. Agbayani, MPH

“If you want to change the world, go home and love your family.” -Mother Theresa

Sometimes we think that in order to make change we have to make a lot of noise. What I have learned from my experience of raising my children, and especially raising my deaf child, is that you have to be able to drown out the noise and listen to your heart.

We found out my son was deaf in September 2010. I’m not sure why I was so shocked because after almost six months of testing we finally had an answer. But I still remember that feeling when I heard the words “Your son has a hearing loss.” My heart sank, tears fell, and this overwhelming feeling of shock took over. The Audiologist had many well-meaning things to say. But I felt like I was in the scene of a Charlie Brown cartoon when the adults talking sound like jibberish. All I could focus on was “What was my son’s life going to be like?” “What is our family’s life going to be like?”

We came home from that appointment and I felt defeated. But with a six-month old infant, a teenager, and now a Deaf child, I had no time to feel sorry for myself. So I spent most of my time on the internet looking to find every answer to calm the worries in my head. We asked for second opinions, I went through parent training modules, but there was no place in the internet that reassured me that everything was going to be okay.

Reaching out to family had challenges of its own. Those closest to me felt pity for our circumstance. Pity was not going to help me, so I found myself getting angry with them and frustrated having to explain what I was trying to do for my child.

To further complicate the issue, in my culture and within the community of family, disabilities is not something to be discussed. Filipinos have a tendency not to share, for fear that if others realize our weakness then we, ourselves are perceived as weak and therefore bring shame to a family. So even in my own family I felt lost and out of place.

In fact, we lost a lot of friends and family along the way. Well-meaning individuals who would minimalize his hearing loss, or say things like “Well just get a set of Rosetta Stone and he will learn language like normal.” One of the most hurtful things I witnessed was at a family party when my nephews were playing a game of “Can you hear me now?” They would walk around my son asking him if he could hear them. Because my son is the playful type, he innocently went along with the game while they laughed at his expense. It was then that I realized the true meaning of “You must learn to walk away from the things that no longer serve you.” It was a painful but necessary lesson. Their noise was clouding my vision.

The first time I ever felt “normal” again was in February of 2011. We had just fought and won our first battle to get our son into the only non-public oral deaf school in our area (a story I will leave for rainy day). I remember clearly his first day, walking through the gates of Oralingua School for the Deaf in San Marcos, California. We were all welcomed and greeted by mothers who were so excited to see another child admitted to the program. There were only six children at the time and my son made the 7th student at the school.

I finally felt at home with our new community. When our kids were busy learning, the parents (we proudly referred to ourselves as the “Parking Lot Moms”) would gather at the local coffee shop and share our stories, retell how our children were diagnosed, explain how they got to the school, and their journey. With each story I heard, my heart felt at ease. Finally, I met another parent who understood me. I didn’t have to speak but just listen. Every word healed my soul. Till this day, these mothers are like my sisters and our children are like siblings from another mother.

I realized early on how important it was to have this kind of network when you are going through something unique and unfamiliar to you. Parents can benefit when we learn from each other. When we can listen and share the choices we have made with each other. We learn to open our minds to new ways that we can help shape our children’s future.

At the time when my son was diagnosed, I only knew three people who were Deaf. My Uncle (my mother’s youngest brother) who had been deaf since he was an infant, an Uncle who was late deafened as an adult, and a friend I met later in life. I asked so many questions at the time. I wanted to know what their lives were like, what challenges they had to overcome and how they got to be who they were today. Deaf adults have a significant role in our understanding as parents. I learned that they have something I cannot give to my child, an insight to the Deaf experience that was critical for my own understanding.

I especially remember talking to my friend and asking her about her hearing aids and school. I was so focused on the technical aspects and she kindly responded to all of my questions. She shared about her experiences growing up in the United States when her parents found out she was deaf. Her mother sacrificed everything she had, left her husband and their life in the Philippines, and brought her and her sister to the United States so she could have a better life. John Tracy Clinic had an international program at the time and she had the opportunity attend the school. It was then that I started to think that maybe our problems were not necessarily about my son’s hearing (I can never change that), but about giving our deaf child opportunities so that he can be the person he is meant to be.

As a parent of a child with special needs, you go through many cycles of joy, pain, confusion, and brief moments of clarity. Some days you just lose it, it comes with the territory. It doesn’t have to be anything significant that happens but some days are just tough.

I remember one day, it was just like most days. I was carrying my twelve-month old in my arms, dropped off my eldest at high school, and went to the hospital for one of my son’s many appointments. I must have been very exhausted because after one of my son’s back to back appointments I just sat in my car and cried. The emotions I held in my heart just suddenly overwhelmed me. Beaten and broken, I wanted my faith to show me a sign, anything to help me understand why life had to be so hard. I was never angry that my son was deaf but I was frustrated because I didn’t know if what I was doing was ever going to be enough.

Suddenly, my three year old deaf son (who had just learned how to put 2-3 word utterances together) looked at me, wiped the tears from my eyes, and said “Mom, why cry?” His sentiments made me smile. I just gave him a big hug. It was what I needed at just the right time. From that moment on I realized, there was NOTHING wrong with him. He didn’t know any differently that he was different. My answer was there beside me, telling me that I was doing EVERYTHING right. In his beautiful world he didn’t know he was “deaf”. All he cared about was that I loved him. I was the one who was broken and HE was the one who fixed me!

Sometimes we get so focused on taking care of others needs that we fail to tend to our own needs! Our kids need us to take care of ourselves! It is as much a priority as our responsibilities as a parent! When you are on a plane they instruct you to put your own oxygen mask first before you do it for your child. I needed my air so I could breathe and think clearly. Then I could refocus and care for the needs of all of my children.

When I finally stopped feeling sorry for myself, I got myself together, and started focusing on my own needs. It had been six months since I got a haircut and it was one of the first things I did for myself. I forgot how good it felt to feel “normal”. Little by little our lives transformed and we found our “New Norm”. I made it to the gym, spent time with friends, and enjoyed my family time.

It was important for my husband and I to spend time together finding moments of joy with each other, despite the hardships we were experiencing. We squeezed in date nights when we could, even if it meant driving in the car till “The Littles” fell asleep to have ice cream cones together. It’s those sweet moments that I cherish the most.

My husband is a hard worker. He worked full-time to support the family while I was busy managing our family business, taking care of the kids, and driving to appointments. When I needed rest or a moment of sanity he gladly stepped in and did his daddy duties with pride. We spent a lot of time talking to each other as a family, having conversations about everything. We love to travel and we learned from our experiences together.

We knew that if we were going to help our son communicate with the world we needed to learn how to communicate as a family. Because when you have a deaf child, you become a deaf family. As with most families, the diagnosis of having a deaf child changes your life and the dynamics of a family. This was not our weakness, it only made us stronger.

My son’s diagnosis changed me too! I have always been a bookworm and self-proclaimed nerd. So when life settled to a comfortable pace, I went back to school and started online classes to earn a second bachelor’s degree in Communicative Disorders and Deaf Education at Utah State University. I graduated on the Dean’s List in 2013. I always felt lucky that I had the kind of training that most of my fellow classmates didn’t have. Regardless of my degree, I was a parent first. I used my new found knowledge and taught my son how to read and write. I learned to communicate with him and create opportunities for him to learn how to communicate with others. It was exciting to use the tools I learned and see my son’s progress. I was fortunate to have on the job training! This knowledge helped me create better relationships with his educators. I knew that if he was going to meet his goals, as a part of his IEP team, we needed to work together.

When my son was mainstreamed in our home school I decided to take a job as an aide in a Special Education classroom. I worked my way up to becoming a Behavior Intervention Instructional Assistant working with kids on the Autism Spectrum. I also volunteered at the local Children’s Hospital working with kids who were Deaf and Hard of Hearing. I also volunteered briefly for an Audiology office observing Aural Habilitation techniques used for kids with Hearing aids and Cochlear Implants.

My work experiences helped me have a different perspective compared to working with my own child. It helped me understand that professionals have a responsibility to heal, to habilitate, and to provide a service that meets a specific need for our child. But that does not take away from the real learning that comes from home. As a parent, our job is to meet professionals and educators half way. They hold the piece of the puzzle that we need to understand our own journey. It’s our job as parents to put the pieces together in a way that fits best for our family.

As a parent and a “wannabe” professional, I met Auditory Verbal Therapists, ENTs, Speech Pathologists, Occupational Therapists, Reading Specialists, and Deaf Educators and Specialists along the way who gave me different tools to use. I like to think of these moments like a trip to the “Special Needs Home Depot”, you can fill your toolbox with many tools and use it if (and when) the time is right. I filled my head with a lot of information, gave myself the opportunity to fill my toolbox as much as I could. I didn’t want to miss the opportunity of having something fit just right for my family or for the children that I worked with. My advice for new families is to always keep that toolbox open and learn as much as you can! Together with your child you can figure out what works best!

In 2015, I got my first job working on a research project studying outcomes of Deaf and Hard of Hearing Children with Cochlear Implants. Having a better understanding of the CI candidacy process and collecting data from educators helped me understand the many different factors that can influence a child’s ability to succeed academically as well as communicate effectively. The bottom line (as a parent by this time I was NOT surprised) family involvement in their child’s education has a positive correlation to overall success.

Because I was no longer just on the receiving end of services, I gained a newfound appreciation of the fact that we all have different perspectives, but our hearts are in the same place. Professionals, even those who think differently, expect different outcomes, or provide a viewpoint different from ours also want the best for our children. We are more alike than we are different. I often think to myself, “Imagine how much we can accomplish as a group if we focus on the sameness and not differences.” Our children need us to work together.

Togetherness is a concept that speaks to the core of what it was like for me parenting a child who is DHH. It is a re-occuring theme in my life, in our journey as a family, and now for me as a professional. When everything was falling apart, I struggled to keep my heart, my family, and my community together. Some days were better than others and progress was not always perfect or prompt. What gave me hope when times were tough was realizing that along the road, I walked the journey with people (my son, my family, DHH parents, and everyone else that crossed my path) who reminded me that I was not alone.

It seems like a lifetime ago when my son was diagnosed. My son is now 11 years old, entering his last elementary school year in the 5th Grade. He has friends (both hearing and DHH), plays baseball (his favorite positions are 3rd base and catcher), loves Hip-Hop music, and annoying his two siblings. My eldest daughter, a senior at CSUN in the Music Therapy Program and President of the Music Therapy Student Association, hopes to pursue a career helping others with specials needs. My youngest daughter (who is now eight years old and grew up alongside our beautiful journey) has won awards at school for good character, recognized for being kind and having compassion for her fellow students. My husband and I can only look back and think about how far we have come. Married for 10 years and after everything we have been through, we live the truth of that “which does not kill you will only make your stronger”! Our lives have never been without struggle, but we wouldn’t change a thing.

Currently, I work as a Pediatric Clinical Research Coordinator for Rady Children’s Hospital in San Diego, I serve as PTA President for my children’s school and on the Community Advisory Committee for Poway Unified School District. Most importantly, I remain committed to my role working with California Hands & Voices helping to build bridges between parents, professionals, educators, and others in the DHH Community.

Together we grow. While my son was learning how to speak, learn, read, write, communicate; I was learning too! When he struggled, I learned how to help him succeed. While his knowledge of the world around him grew into his identity, his identity defined who I am today. His deafness helped me learn how to listen to my heart and my heart allowed me to follow my passion.

Healing begins when you can find purpose in your pain. What started off as a desperate mom looking for answers has led me on a path where I have combined my real life experiences as a DHH mom with the knowledge of as a Professional. Because of this, I feel a responsibility to share my unique insight with others. Everyone has an important role to play. As Parents, Deaf Children, Deaf Adults, Medical Professionals, Educators, Researchers, and Advocates we all have the power to create a community for DHH Children and their families…TOGETHER.

By: Kristi Riley

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.

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!

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.)

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.