In a world that ranks kids by grades, likes, and labels…
Compassionate Friends whispers a different truth.

Every child deserves to know they are loved.
Not because of what they do, but because of who they are.

Compassionate Friends helps families, teachers and therapists,
start conversations about differences, kindness,
and what it looks like to treat others the way you want to be treated.

Compassionate Friends is an inspiring story for children
and an empowering reminder for grown-ups that…
~ You don’t have to be perfect to be loved.
~ You don’t have to change who you are to belong.
~ You are free to be who you were created to be.
~ So be wonderfully you!

The Story Behind the Story…

In Becky’s earliest memories her parents were busy caring for her baby sister and the medical needs of her older sister. So Becky tried to be helpful, but instead, she got in trouble for making mistakes. Becky’s insatiable curiosity and fierce determination earned her the label of “strong-willed child.” When her voice was harshly silenced, Becky became fearful and quietly began to write, filling countless journals over the years…

Born Different

Becky’s husband, Duane, and their younger daughter have the same syndrome as the main character in the book and movie Wonder. Becky wanted a book that could be used in schools, but for a younger audience. She searched for children’s books featuring children who have facial differences and wear Bone Anchored Hearing Aids (BAHA). Unable to find any such books, Becky’s husband Duane, encouraged her to create the solution, by writing children’s books to share the stories of their family and friends. 

In 2020 the Zingale family was featured on the Born Different show. With over 1.5 million views, the Zingale’s realized their story impacts a bigger audience than just those who have facial differences and hearing aids. This inspired Becky to begin writing children’s book featuring characters who are wonderfully different, not only for her own daughters, but so all children can see themselves represented in a story – whether they connect with a character’s personal challenges, physical appearance, interests, or personality.

Becky is finding her voice, and this time, she will not be silenced…

After becoming a published author with Wonderfully Different, Wonderfully Me, Becky grew in confidence, as she began discovering and becoming who she was created to be. Becky’s first book has sold over 1500 copies to families and teachers across the country, many of whom have incorporated it into their curriculum, and said Wonderfully Different, Wonderfully Me is their child’s favorite book! 

As a Super Sibling herself, Becky was honored to help her daughter, Chloe, feel seen and heard as Chloe wrote her story about Becoming A Super Sibling.

In simple language that is easy for kids to understand, Chloe explains…
Facial Differences, Cleft Palate, Hearing Loss, BAHA/Ponto Hearing Aids,
and of course, the ways she helps her sister! 

This heartwarming story offers hope and inspiration for families dealing with a challenging diagnosis and for those who want to lend their support.

Now in Compassionate Friends, Becky rewrote situations from her life story, to be filled with the messages of compassion she needed to hear and the affirmations she is learning to say to herself and her children. 

Compassionate Friends provides a model of how to show
kindness and compassion toward ourselves and others.

Becky wants all children to experience love, acceptance,
and freedom to be who they were created to be! 

Coming Soon! “Compassionate Friends” will be available for pre-order with special early-bird pricing for the first 48 hours.

Go to our ​kickstarter​ and click “Notify Me on Launch”
so you don’t miss out on this opportunity to get all 3 of our books at the lowest prices ever!

You’ll be notified when our kickstarter goes live on March 21st,
and then you can choose a reward you love and hit the green “Pledge” button.

Kickstarter will take your information, but no money will be charged until the successful completion of this campaign.

The post Compassionate Friends! appeared first on The Baha Mama.

I froze in my tracks and turned to face the woman who was speaking.

“My daughter has Treacher Collins Syndrome too!” I said, surprised to meet someone who had heard of such a rare facial syndrome. 

My daughter’s theatre group had just finished their first performance. She plays the part of a nameless orphan in the background of “Annie.” But even in the midst of children in drab outfits, my daughter stands out, with her facial differences and hearing aids. 

Today, those differences caught the attention of a Grandma, who was so encouraged to see my daughter on stage, having fun with her friends, feeling free to be herself, loving life and full of joy. Moments like this make this Mama’s heart so happy!

My daughter is the reason…

I opened my Etsy shop, The Baha Bowtique, making headbands and accessories for Baha/Ponto. She is also why I started writing children’s books featuring characters who are Wonderfully Different. I was inspired by my husband’s confidence, in spite of his challenges, growing up with facial differences and hearing aids, and I wanted our own children (and yours) grow in confidence too!

Grow in Confidence and Compassion with Wonderfully Me books!

As a parent, I wrote “Wonderfully Different, Wonderfully Me,” not only for my own daughters, but so all children can see themselves represented in a story, whether they connect with a character’s personal challenges, physical appearance, interests, or personality. 

“Wonderfully Different, Wonderfully Me” is the children’s book that belongs in every household and classroom, to promote inclusion, acceptance and friendship. If you are a parent, teacher, or medical professional assisting a child who feels a bit different, “Wonderfully Different, Wonderfully Me” will inspire and encourage your children to find what they have in common with others and to celebrate what makes them, and others, wonderfully unique.

“Becoming a Super Sibling” is written from the perspective of big sister Chloe. In simple language that is easy for kids to understand, Chloe explains… Facial Differences, Cleft Palate, Hearing Loss, BAHA/Ponto Hearing Aids, and of course, the ways she helps her sister! This heartwarming story offers hope and inspiration for families dealing with a challenging diagnosis—and for those who want to lend their support.

Children grow in confidence and compassion when they see themselves, and their friends in the story, and not just their differences represented, but the beautiful things about who they are and who they can become. 

Wonderfully Me Books are a great gift for your children, classmates, parents, grandparents, teachers, medical professionals or anyone working with kids who are wonderfully different. This series can be used in homes, churches, schools, childcare centers, and waiting rooms to start conversations which promote inclusion, acceptance, and friendship. 

Resources, information, and hardcover books are available at: 
WonderfullyMeBooks.com or TheBahaBowtique.etsy.com
Follow on social media @OurWonderFamily (FaceBook, Instagram, YouTube)

The post Why do I do what I do? appeared first on The Baha Mama.

April 2018, I purchased A Beautiful Girl at a little local bookstore. Our girls loved the book! They enjoyed looking at pictures of cute little girls who each have different colors of hair, eyes, skin, as well as different personalities. My girls would say, “I am this girl!” and “you’re that girl,” and “this girl reminds me of a friend.”

I was especially touched by the page featuring a little girl who has cancer.

Inspired by that page, I reached out to the author, Nikki Rodgers, and asked, “have you thought of writing a book featuring children who have different special needs and focusing on the positive characteristics about them?”

She responded,

“I am not very familiar with that world, perhaps God is calling you to write the book that is on your heart?”

– Nikki

So much for that idea… I did not feel qualified to write such a book either. That was the end of that. So I thought. 

I had bought various hearing-aid theme books for our daughter, but none of them showed her style of BAHA hearing aids, so my husband encouraged me create a solution by writting our family’s story. Over the course of a couple years, I wrote Asha’s Little Ears, the story of when our daughter got her BAHA hearing aids. 

By the end of 2020, I was finally in the process of publishing Asha’s Little Ears, when the “Born Different” video came out, featuring our family.

After watching the video, my publishing coach called and said, “Asha’s Little Ears is a great book, but your family has a bigger message, something for everyone who is Born Different, and you need to write that book.”

I did not like that idea, because it meant starting over. After working on Asha’s Little Ears for over 2 years, I kind of wanted to publish the book I had already finished.

Then I remembered my conversation with Nikki, and I knew now is the time to write the book which God had put on my heart almost 3 years ago.

Over the course of the next few months, I watched YouTube videos, read books, and interviewed friends whose children are born different. Those children inspired the characters in my new book and brought them to life.

Wonderfully Different, Wonderfully Me, features a diverse group of children, including my daughter who wears BAHA hearing aids, her super sibling sister, and several of our friends. 

Wonderfully Different, Wonderfully Me celebrates each child’s unique strengths, and promotes inclusion, acceptance and friendship.

My goal in writing Wonderfully Different, Wonderfully Me, is for all children to be able to see themselves in at least one of the characters, whether they look similar, or have the same interests or personality. 

Reading Wonderfully Different, Wonderfully Me will encourage children to find what they have in common with others and to embrace what makes them, and others, wonderfully unique.

November 2020, I held a copy of Wonderfully Different, Wonderfully Me, in my hands, and by the end of December over 230 books had been mailed to families across the USA and Canada.

Wonderfully Different, Wonderfully Me is available exclusively on my website: WonderfullyMeBooks.com 

Each Hardcover book includes these FREE Bonuses: 

• One Keepsake Magnet (3.5″ x 2″)
• One Beautifully Illustrated Sticker (3″ x 2″)
• The Complete Digital Reading Experience (website link is in the book)
• One Creativity-Boosting Printable PDF Coloring Book (sent to your e-mail)

There’s also an optional add-on item:

• Interactive Sticker Scene with all the characters from the book.

This beautiful hardcover book, Wonderfully Different, Wonderfully Me, is available exclusively on my website. Order your copy today at WonderfullyMeBooks.com

The post Wonderfully Different, Wonderfully Me appeared first on The Baha Mama.

The most common style of handmade masks has loops for around the ears, which poses a challenge for those who have microtia. Even people who do have ears, complain that the elastic is irritating.

One solution is to find (or make) a mask which ties behind your head.

But if your only option is a mask which has elastic straps for around your ears, here are some solutions:

1) Paperclip

I do not know who to credit for this idea, nor do I know whose picture this is, just found it floating around on the internet…

2) Mask Strap Remix There are several options of 3D printed devices like this one: https://www.thingiverse.com/thing:4249113

3) Sew 2 Buttons onto a piece of ribbon. https://www.facebook.com/bridgettec.mcquaig/posts/10219899852184261

4) Ribbon with Snaps – Personally, I do not enjoying sewing buttons, and I have lots of snaps, so I added snaps to a ribbon to create this Ribbon Mask Holder:

Ribbon Mask Holder can be purchased from my Etsy shop, The Baha Bowtique https://www.etsy.com/listing/779581952/ribbon-face-mask-holder-snap-on

5) Use a random toy, like a Monkey from Barrel of Monkeys. (This is my favorite idea so far!)

6) Ry-Bandz headbands have buttons sewn on https://www.ishopintheivy.com/

Ry-Bandz can be purchased at Shop In The Ivy: https://www.ishopintheivy.com/

Urban Halo has a similar item called a “Healthcare Headband” https://www.urbanhalo.com/product-category/healthcare-headbands/

And Sew By Katie also makes a knit headband with buttons https://sewcutebykatie.com/collections/headbands

7) Ear Savers – I am now making Ear Savers, which are permanently attached to the softband of your choice. Ear Savers can slide up and down along the softband to adjust to the correct position to hold face mask or sunglasses. The Softband and Ear Savers are sold separately, that way you can choose any color combination. So you will need to order both Ear Savers AND a Softband. Usually my softbands are made for Baha/Ponto, but I just added an option of a “Nurse Softband,” (which is not compatible with any hearing aid). These are available on my Etsy Shop: TheBahaBowtique.etsy.com

Here is the link to purchase Ear Savers on my Etsy shop: https://www.etsy.com/shop/thebahabowtique/?section_id=28488922

This is a compilation of ideas and solutions which I have found on the internet. If I come across more ideas, I’ll add to this list. Please feel free to comment below with your ideas and suggestions:

The post Masks For All… including those who do not have ears… appeared first on The Baha Mama.

I’m going to start with the youngest age and go up. I also include our amazon affiliate links. So if you chose to purchase using that link, Amazon will pay me very tiny commission for sharing these amazing books with you!

First is “Gracie’s Ears” https://amzn.to/2H9490C

It’s a hard-cover book with about 20 pages. It is a perfect little bed-time story for my preschooler, and my first grader can read this book all by herself. Each page has pictures and the whole story flows nicely with rhymes.

“When Gracie wakes up, she wiggles her toes.
She looks with eyes. She smells with her nose.
But Gracie’s ears are sleeping…”
Then when Gracie gets hearing aids, suddenly her ears are awake!

Last night, when I tucked my 4 year old daughter in bed, she handed me her hearing aids and said, “now my ears are sleeping, and my whole body will be sleeping soon too!” I love that language. It is way better than saying, her ears are “broken” and hearing aids “fix” them. Nope, her ears are just sleeping.

Next is El Deafo. https://amzn.to/39oLvy2

It’s the size of a novel, but written as a comic book, so very fun and easy to read. Cece gives the reader an inside experience to life with hearing aids. When her hearing aid batteries are dying, the text begins to fade. If a character has his back turned, the text is jumbled and harder to decipher. Her teacher uses a microphone which sends her voice directly to Cece’s hearing aids in an extra-large easy-to-read font.

This book is 3-7th grade reading level, but I’m not sure at what age I’ll let my girls read this book, because…

1. In the book, Cece is embarrassed to wear her giant back-pack style hearing aid at school. Then it gets broken and she has to survive a month without it, and she realizes how amazing it is. But currently my daughter is Not embarrassed by her hearing aids, so I don’t want to give her that idea. But if/when my daughter is struggling with wanting to wear her hearing aids, then I’ll let her read this book.
2. Also at one point in the book Cece has a crush on a boy at school. So again, not an idea I want to introduce until my daughter is already at that stage, which is hopefully never, but that’s probably unrealistic…

I, as a Mama, throughly enjoyed reading this book, and now I’m curious to go read “Diary of a Wimpy Kid,” because I’m probably not too old to enjoy that, right?

Now Hear This https://amzn.to/38gTRaw

I just pre-ordered this book, but it’s not published yet (as of Feb 2020). I’ll say more after I see and read it.

I did chat with the author and she said, “We wrote it for kids to “grow” into. First, being read to and then reading on their own. My daughter Harper always had a love of reading, so she wanted it to be “rich” with language! We love words. But we also worked with the amazing Priscila Soares – My Luckyears to create illustrations that visually support the story and Harper’s voice. They turned out so amazing! They capture the essence of Harper!” 

I’m pretty sure everyone already knows about the book Wonder (or the movie). https://amzn.to/39oUe3d It is required reading for 4-5 graders at schools across the USA.

Wonder is about a boy, Augie who has craniofacial syndrome, and wears BAHA hearing aids (although the movie leaves that part out).

This book has been life-changing for people, like my husband and our daughter, who have craniofacial abnormalities. People used to stare or ask rude questions, “what’s wrong with your face?” But now we can break the ice by asking them, “have you seen the movie Wonder? My husband and our daughter have the same syndrome as Auggie.” Pretty much any 4-7 grader will respond, “No way! That’s so cool!” Of course adults realize it’s actually not that “cool” but they at least they have some context and know everyone looks different, and we are all wonders!

Normal https://amzn.to/2Suw40i i

These two books were just published (in 2020) and written by a mother, Magdalena, and her teenage son, Nathaniel. He has the same crainofacial syndrome as Auggie, my husband, and our daughter. I bought and read both books. I read the Magdalena’s first which has some comments from her son mixed in. After that, reading the kid’s version just felt like a summary with less details. If you’re going to read both, I think start with the kid’s book.

Do we need to buy both books? Well, my children will read the kid’s book, when they’re old enough. But as a mom, I enjoyed reading a mom’s perspective, it was very insightful into the reality of life with a crainofacial syndrome with all the challenges and surgeries. I am incredibly grateful that my husband and our daughter are not effected as severally as Nathaniel. Had I read this when my daughter was newborn, it would have been insightful to the road ahead of us and the potential challenges.

Diary of a Beautiful Disaster https://amzn.to/2uw6boR

Written by a lady who has that same crainofacial syndrome. I read it 2 years ago now, so my memory of it is a bit fuzzy. It’s her story of challenges, surgeries, trying to make herself beautiful, and then learning to love herself and see herself as beautiful just the way she is. She had some traumatic surgery experiences which sounded so awful and made me want to avoid surgery at all costs (unless it’s a matter of life or death). I recommend waiting to read this book until you (or your child) have made it past the necessary surgeries and are trying to decide if you want to do cosmetic surgeries.

As a Mama, this book made me realize how import it is for my daughter to know that she is loved and accepted and beautiful just the way she is.

That’s all I have for now, but as I find and read more books, I’ll add them to this list. And if you have any book recommendations, let me know what I should read next!

The post Books about Hearing Aids and more… appeared first on The Baha Mama.

Thank you!

The lady continued, asking, “what is her name?” …and… “oh, that’s so beautiful.”

I was having a lovely moment, appreciating the friendly reminder that most people think my daughter is adorable…

Because recently, I overheard the little boy say to his older sister, “that girl looks scary.” The children were maybe 4-8 years old. Their mom was right next to them, but busy on her phone. The boy said it a couple times, as his sister tried to hush him. I looked around to see who he was talking about. Then I realized he was looking at my daughter.

I realized this is a good teaching moment, although I’m not sure what to say to some random child, while his own parent was completely absorbed typing on her phone. Probably better that way. I would have felt bad if the mom was embarrassed and forced her son to apologize and turned it into a big awkward ordeal.

So I asked the little boy, “this girl?” Pointing to my daughter. 

The boy looked at me nervously, “yeah. She’s scary.” His big sister tried to hush him again.

I took a deep breath, and launched in, “she does not have cheek bones,” I explained, tapping my own cheeks, “so her face looks a bit different.” The boy shrugged and turned away, giving into his sister’s pleas and ducking behind his mom, ending our awkward conversation.

I’m not concerned about the opinion of one scared little boy,

because I know my daughter is super cute, and I believe that the majority of people agree with me. And it was lovely to have my opinion confirmed by this random lady at church today.

…But then she ruined my blissful moment with her next question,

“can I pray for her?”

Yep. That question. Again. We are at church after all. I do appreciate prayer, especially when my daughter was a baby and life was hard. But now she’s a perfectly happy, healthy little girl. So I was caught off guard and thinking, “why are you asking to pray for her?”

A million thoughts swirled through my head: What are you planning on asking God to do? For her to grow cheek bones? Or be able to hear? Do you even know those things on her headband are hearing aids? And she can hear great with them. Her Dad has TCS and hearing aids too, and he turned out just fine. He’s also been prayed for a billion times, but still hasn’t grown ears.

How many people are going to feel drawn to pray for my child just because she looks different?

Is my daughter going to feel loved and encouraged by all the prayers?

Or will she become annoyed by the attention, or disillusioned in her faith because she still hasn’t grown cheek bones?

Or will she start asking, “why doesn’t everyone just love me the way that I am? Why do they think I need cheek bones? Am I not good enough?”

My questions are rooted in my own childhood…

*read the following section with a hint a teenage sarcasm*

Growing up, my sister Hannah, was in a wheelchair. Our family lived on a Bible College campus, where my parents were on staff, so praying for Hannah was the trendy thing to do. We spent our entire childhood, hearing over and over, “can I pray for you?” And it just gets old. 

Don’t get me wrong, I appreciate prayer. I believe in the power of prayer. I have seen miracles. But as teenager, the whole, “lets pray for her again!” It gets annoying. 

One night at youth group, when Hannah was about 16 years old, a friend said, “lets pray for Hannah!” And I was thinking, “wow, so original” (I warned you about the sarcasm) “Here we go again.”

All the teens gathered around, praying heart-felt prayers. I prayed silently. I am pretty sure I have never told to anyone the incredibly faith-filled words I prayed that evening, something to the effect of, “God I am done. This is the last time I’m praying for her. You said in the Bible, that we could lay hands on people and see them be healed. So if you’re ever going to heal her, now would be a good time to do it. Cuz I am done.”  

That night at youth group, Hannah got out of her wheel chair and walked. 

When it came time to go home, everyone stayed, waited and watched as my mom arrived to pick us up. Mom opened the door, watching in shock as Hannah walked across the room to her. 

It was a powerful moment for everyone.

But I felt like a spectator, watching the events unfold around me. Maybe I was still in a bit of shock… I was not expecting today to be any different than the other million times we had prayed for Hannah.

In hindsight, that was a defining moment. 

I cannot fathom how different my life would be if God had NOT healed my sister that day. Thinking back, I wonder, if things had gone differently, where would I be today? What would I believe? Who would I have become? I don’t even know. I have never actually thought about that until writing it just now. This is the first time that I am fully aware of what a defining moment that event was for me. 

10+ years later, I fell in love with Duane.

Even though he looks “different” and a 50% chance our child would have facial differences, I was ok with that, thinking, “been there, done that. It’s no big deal.” Although that response changed, when our 2nd daughter actually was diagnosed with TCS. That hurt. Looking at my first-born daughter, thinking, “I’m sorry honey, this is not the childhood I would have chosen for you.” I was ok with the idea of being the mom to a child who had TCS, but it had not occurred to me that child might have a sibling, who did not have a choice in the matter.

Fortunately Big Sis enjoys all the cool toys they have in hospital waiting rooms, and says all the time, “my sister is so cute! I just love her!” Although Big Sis is jealous of Little Sister’s super cool hearing aids.

Fast-forward to now…

My little daughter’s 4th birthday, coinciding with the weekend when the local Bible College is back in session. The students are eager to pray for people, so a random lady at church asks, “can I pray for her?”

I know this will NOT be the last time we hear that question. I should probably figure out how to respond…

I suppose the question, “may I pray for her?” could be a roundabout way of asking for an explanation of TCS / hearing loss. As well as an opportunity for me to share specific prayer requests. My thought is to respond in such a way as to imply, “she’s a normal kid, and needs the same things any other child would.” Some sort of response which helps people realize we do not have any major concerns, so please do not feel “burdened” to “travail” in prayer for her.

I got some ideas from other Mamas of kids have facial differences and/or hearing loss:

“Come up with specific things your family wants prayers for – stuff like acceptance from others, being God’s light in the world, making new friends, help making some sort of goal she has set, or even if she is getting over a cold.” – Jenn Snow 

“Often people don’t know how to help, so they offer prayers. We appreciate these gestures because it means there is one more person praying for our son. We don’t pray for healing. We pray that he will love himself and know he is loved, that he will make friends easily, and that we make the best decisions for him. We have seen miracle after miracle in his little life, so we’re thankful for the prayers, even from strangers.” – Tara Glandon 

“Pray that he loves himself and feels the love we have for him, and that God has for him. Pray that people will be kind. Pray that the school system does not limit him. Pray that his surgeries go well, when he has them. And pray for me. Pray that I have an outlet for stress that’s healthy. Pray that I show him how to love the Lord with all his heart. Pray that I win the lotto so staying home with him isn’t so hard. (Joking.. not joking). Pray that I can appreciate the time I have at home with my boys. Pray for his brother. That he is strong, protective, independent, and loving. He’s already those things, but more can’t hurt. Pray for my husband. He supports us all on his own now. That’s no easy thing these days. Pray for faith and strength. Please don’t bother praying for him to get better. He is well and thriving. He is not sickly. He runs, plays, throws toys at his brother, and speaks 2 languages. (Sign Language and English) he also understands everything you say. So don’t act like something is wrong with him. He’s wonderful.” – Jennifer Spiegelberg

Thanks to those ideas, my prayer request would be:

For my daughter, please pray: that people will be kind. That they will see the beauty in her, and love her for who she is. That she will know she is loved and know she is beautiful. Pray that she would make friend easily have true friendship, not out of pity or obligation. Pray that she would continue to be a brave, bold little girl and to conquer any challenges which come up, and that she would inspire others to never give up. Pray that her life and our family would be a light and encouragement to other families.

The post That Question. Again… appeared first on The Baha Mama.

I have heard stories of that moment when a child asks about their own little ears or wonders, “why do I have a hearing aid?”

I have been waiting to see if my own daughter will even needs to ask. Our family is unique in that my husband and our 2nd daughter have BAHAs. Also I make and sell softbands for children who wear BAHAs. Whenever anyone asks what my job is, that leads to explaining how the Baha works and showing them my husband’s Baha on the abutment, and then explaining how my daughter’s softband holds her Pontos.

Softbands and hearing aids are everyday topic of conversation in our home, as our world seems to revolve around BAHA’s. So much so, that Big Sister is jealous because she only has headbands but no hearing aid. 

So I’ve wondered, will my daughter someday realize she’s “different,” or does she already know? But as it turns out, she wants to know: why is my Mama different?

This past weekend, we went out for Dinner and Ice Cream for Dada’s birthday. Afterwards, we sat on the grassy yard by the restaurant, letting the kids run off all that sugar. PipSqueak took a break to sit next to me. Looking at me thoughtfully, she began to ask…

“Mama, when you was a kid, do you has a headban?” 

“yeah,” I answered, “I wore headbands sometimes. just like I do now.”

PipSqueak tapped her Pontos, “wis 2 hearing aids like me?”

“No, honey I’ve never had hearing aids.”

PipSqueak looked confused, “Oh. But how is you hearing?”

“Um. I hear through my ears,” I explained, “I have ear drums, so I don’t need a Baha hearing aid.”

PipSqueak looked at me like I’m crazy, hearing through the ears, without a hearing aid? That’s unheard of! She looked over at Dada, “Dada has a hearing aid and no headban. Did Dada hab a headban when he was a kid?”

Dada joined the conversation, “I didn’t have a headband, I had a backpack.”

When Dada was kid, his hearing aid was so big, he wore it like a backwards backpack on his belly. Fortunately, technology has come a long way, and now kids get to wear a little tiny hearing aid on a cute softband, which is much nicer looking then Dada’s “backpack” hearing aid. 

So there we have it folks, my daughter has noticed that Mama is different, and thinks it’s a bit strange that I do not have a hearing aid.

The post Well, that’s different… appeared first on The Baha Mama.

146 comments. Everything from people making a pun about ears, to angry parents whose children who born without an ear. You can read all the comments here: https://www.facebook.com/260234427427165/posts/2296682540449000

My husband has 2 prosthetic ears

Actually he has 4 prosthetic ears, but the one pair is super old and needed replaced because the color was faded the magnets were falling out. He only wears the new pair, because 2 ears looks better than 4. His ears look just like the one in the picture. I mean, not exactly, his are a different shape. Designed after his dad’s ears, because I guess his dad has good looking ears. Can’t say I’ve noticed his dad’s ears. I just know what my husband’s ears look like, because I see them laying on the nightstand, or I get to hold them (and his glasses and hearing aid) when he randomly decides to jump in the lake.

Our Daughter’s Ears

When I was pregnant with our first baby, I asked the ultrasound tech, “does she have cheek bones and ears?” The Tech responded, “yes, and finger and toes.”

“Um I know she has fingers and toes, but my husband, her dad, doesn’t have cheek bones or ears, so can you check and see if she does?”

Then when our daughter was born, my husband said, “she has my ears!” I responded, “what on earth? She actually has ears. Do you mean she has your dad’s ears? Cuz you don’t even know what your ears are supposed to look like.” He answered something to the effect of, “she has my ears, that’s why I don’t have any ears.” Isn’t it so kind of him to give his ears to his daughter?

Duane’s Childhood

Growing up, Duane was friends with the bullies, and the cool kids thought he was cool too. Everyone loved him! Why? He had a great sense of humor.

Duane says that everyone gets teased about something, but he had an advantage, because he knew what kids would tease him about (ears/face/hearing aid) and already had a great come-back ready to go. Someone would make a pun, he would respond with a better pun. He would defuse a bully situation by making fun of himself, which made the bully feel uncomfortable and he didn’t know how to respond after that.

Kids don’t know how to act / respond when they see someone who looks different, it’s intimidating. They’ve been taught not to stare. Not to ask questions. So what does that leave? Nothing except to whisper behind their back. That back-fires because people who have prosthetic ears, usually have Bone Anchored Hearing Aids, which work very well. So Duane could take his ears off and still hear better than I can. In fact sometimes, when our kids are whining, he takes his ears off and says, “I can’t hear you.” They respond, “yes you can hear me, Dady, you still have your Baha on!!”

Our response to the FB post

All that leads up to: our response to the previously mentioned post on facebook, people’s comments, and the comments on the comments, and people freaking out about the comments.

Yes. Prosthetic ears are super expensive. No, they do not have serial numbers (but they should, that’s a great idea!).

On one hand, some of the comments are rude and immature. It’s no wonder kids are bullies, they learned it from their parents (the ones who are making mean comments on FB). On the flip side, I’m not surprised when kids who have microtia etc are insecure about their appearance, or get angry when people make comments. They learn that from their parents too.

So please, think about how you respond to comments and stares. Teach your kids to be comfortable and confident in who they are, and learn to have a sense of humor.

And maybe come up with some great puns of your own and practice some responses to defuse the bully situation. Example: I once met a guy who has a crazy looking scar. He says he got bit by a shark. Kid’s eyes get huge. He tells a great story. Then he says, “just kidding, here’s what really happened…” When you are totally comfortable talking about the elephant in the room, that greatly reduces the tension in the air.

Be the one to start the conversation

Usually if I see kids staring, I ask them, “have you seen the movie: Wonder? Duane has the same syndrome as Auggie (the main character)” Thus far, every time, the response is, “no way, that’s so cool!” Personally I wouldn’t say TCS is cool, but it is cool that they think it’s cool. Thank God for “Wonder” and it’s perfect timing, coming out just after the birth of our second daughter, who has TCS, just like her Dada (and Auggie). She is missing a bit of her cheek-bones. When I was pregnant with her, we made sure to pray for ears, at the timing that her ears were growing, and she does have cute little ears (very mild microtia). But we forgot to ask for an ear-drum, so she still needs hearing aids just like her Dada. And I’m learning to be more specific and detailed with prayer requests.

Someday, when the right person asks about my daughter’s hearing aid. I’m going to tell them it’s a child-training tool, and if she mis-behaves, I can shock her… but I don’t want to freak people out. So I’m pretty boring and usually just say “it’s a hearing aid.” Although I have been asked if it’s a bluetooth device. Why on earth would my toddler need that?! She does not have a cell phone yet. But my husband’s Baha does have bluetooth built in, so he really does use it to stream phone calls directly into his head…so “bluetooth” device is a pretty good guess…

Now you’re probably wondering, if Duane can hear without ears, and is totally comfortable making fun of himself, why did he choose to get prosthetic ears? Well, he needed something to hold his glasses on. $10,000, his glasses are looking great. Unless he puts a child on his shoulders, then ears, glasses, hearing aid, it all falls off, like Mr Potato Head….

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Drew’s Mom and Grandma tried many different materials and prototypes and had them tested by audiologists, because it was of paramount importance for Drew to be able to hear clearly, as well as wear hats and look like a young boy.

Thanks to there innovation, Drew could now wear hats to keep his head warm in winter (he got his baha in October). Then when spring & summer came, he could wear baseball caps and visors to protect his blond head from the sun.

Almost every picture of Drew is in a hat. He even had permission to wear hats to school. When it came time to get the BAHA implanted (at age 6), his family fought the doctor to make sure his BAHA was implanted low enough that he can still wear a hat. Now, at age 14, there is not one day that he leaves the house without a hat.

Drew’s family called this attachment piece a “Block.” It was designed to be used a hats similar to a button in a button hole. Drew spelled backwards is “Werd.” It eventually became known as the “ForWerd Button Block.” The Button Block Connector was designed to provide hearing options for Drew and also for you!

Button Block Connector Vs Oticon Medical’s Sound Connector

The Button Block Connector is not the same as Oticon Medical’s “Sound Connector.” The “Sound Connector” is 2 pieces which snap together permanently attached to a hat, whereas the Button Block Connector is moveable, so you only need 1 Button Block (or 2 if you have Bilateral BAHAs). Your BAHA snaps onto Button Block Connector which can be easily transferred between hats and softbands which are made with a flexible o-ring to hold the Button Block.

How use the Button Block Connector on a baseball hat or visor.

Instructions:

• Find a hat which fits snugly on head
• While wearing the hat, use a marker to mark where you want to cut a hole in the hat, usually just behind the ear.
• Remove hat from head and cut a 1/2 inch x 1/2 circular hole in the hat.
• Sew the edges of the hole by hand using only one or two threads.
• Insert the Button Block in the hole.

If the hat is a little loose on the head and cannot be adjusted tighter, put a wee bit of padding into the band on the hat where the hole is NOT going to be cut. As the head grows, remove this padding so the hat is never too tight.

Now boys can wear baseball hats and visors. And little girls can wear cute hats and sunbonnets!

Here is my first attempt at adapting my daughter’s hat to hold the Button Block Connector to hold her Ponto.

The Button Block Connector can be purchased from the Baha Bowtique on Etsy. There are three styles of Button Block Connectors, one is compatible with Oticon Ponto and a different one is designed to use with Cochlear Baha, and another style for MedEl AdHear. so be sure to choose the one which is compatible with your hearing device. Here is the link to purchase Connectors for Baha, Ponto, or Adhear.

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Finally, someone shared a solution: Ask your audiologist to run the “feedback manager.” At our next audiology appointment, I made the request. But our audiologist said “no.” She was afraid that doing so would “lower the gain on important speech sounds.” 

A few months later, my daughter had a head-cold. When she is not feeling well, she does not like to wear her headband. The problem is either the pressure on her head, or the noise. Either way, I do not blame her. I do not want to wear glasses when my sinus are congested.

After that head-cold, my daughter was having a hard time getting back in the habit of wearing her softband all day. She likes to wear hats, which causes feed-back squeals, so she kept taking her BAHA off. I made another appointment with audiology. Again I asked about running the feed-back manager. Again our audiologist expressed concern that doing so would “lower the gain on important speech sounds.” I shared, “she does not like to wear her BAHA for more than a couple hours a day, so wouldn’t it be better for her to wear it all day, every day, even if she is missing important speech sounds?” Our audiologist agreed, and ran the feed-back manager. She was delighted to discover that doing so had zero effect on important speech sounds. Now PipSqueak can wear hats and hoodies, with no squealing. 

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