Hearing Loss

Mornings as a Deaf Child With Cochlear Implants

The other day someone asked me about SJ’s cochlear implants. The person I was talking with had never heard of them before. I hadn’t either before I had a deaf child. They are such a huge part of my life now that I forget that it’s not “normal” and there are still a lot of things people don’t understand about the procedure and the device.

So I had the idea to share a day in the life of a child with a cochlear implant (CI), but it would probably take a day to write so I am going to break it up a bit. We’ll start with the beginning of the day.

Keep in mind these routines aren’t the same for every child with hearing loss and things will change as each child advances in their journey, but for now this is what it’s like for SJ.

CI recipients wear their processors about the same amount that the visually impaired would wear glasses. The way it was described to me was that “The Three S’s” remind you when to take them off “Shower, Swim, Sleep” So SJ wakes up in silence. She had severe/profound hearing loss already, but when someone has the cochlear implant surgery it damages whatever preexisting hearing they had. So when the processors are off she hears nothing at all.

For now I wake her up, but many years from now when she is on her own there are special deaf alarm clocks that vibrate and there is a variety of options to choose from.

Some children may like to put their CIs on the moment they wake up. SJ doesn’t. She likes to ease into her day and have things quiet at first. I mentioned this to my family and my sister in law (who is hearing) said she is the same way. Makes sense to me. I’m not much of a morning person either.

Anyway, SJ can talk without wearing her processors. She sounds the same either way except she is usually oblivious to her volume. Kind of like when someone is wearing headphones and they don’t realize that they are shouting. So I have to remind her to speak softly when this happens. She also reads lips and signs, so we manage pretty well in the mornings before she puts her processors on. It isn’t long though before she has to be dressed and ready for school. That is when she puts her processors on.

The processor is the part that allows her to hear (shown in the photo above in white, the round part is a magnet) and the implant is inside her head (shown on the left). She calls the processors her “implants” because that word is easier to say. I wrote more extensively about the equipment in the post “All About The Cochlear Implant“.

Technically SJ can put her processors on all by herself, but it’s not easy. So for now I usually do it for her. When she is bigger they will simply hook on her ears and stay put, but right now her ears are just too small. They don’t make child size cochlear implants so a 1 year old wears the exact same processors as an adult. There are multiple options for children to keep the processors on though. SJ uses special headbands that my sister in law makes for her.

At Christmas she gave her some new sparkly ones and SJ has been thrilled to have more options to choose from.

You can get more elaborate with the CI headbands, but SJ’s are as simple as they look. It’s just a headband with an elastic loop.

Sometimes she doesn’t wear headbands and on those occasions we keep the CIs in place with toupee tape.

That pretty much covers the whole morning routine. After that she is hearing and ready to head out the door and go to her deaf school!

By Natalie|2023-06-12T06:22:41+00:00March 9, 2016|Cochlear Implants, Uncategorized|5 Comments

This Time is Different

I sat in the exam room with a tightness in my throat. I had felt fine, but as the reality of it all sank in the emotions rose up. I began to cry hot tears. I felt the need to apologize because I don’t like making other people feel uncomfortable. The audiologist responded in a firm voice ” Do not apologize.” She told me that I was completely entilted to respond any way I wanted and that just because I have been there before that does not make it any easier.

This was what happened a week and a half ago at Elle’s ABR hearing screening. As you can imagine this means that the results were not good. I thought Elle could hear, and I was right. She can hear. She responds to many different sounds, but she still has hearing loss and it’s in both ears. I wasn’t going to talk about it until I knew more, but I am ready to talk about it now. Especially since I just got off the phone with the early intervention specialists who are ready to come over and set up her first IFSP. SJ has an IEP which is an Individualized Education Program because she is in school. Before that you have an Individual Family Service Plan which is when case worker helps you come up with appropriate strategies or goals for your preschool age child with special needs.

So just like that Elle has Special Needs. She is 6 weeks old and already considered delayed because she can’t hear well. I am being blunt, but don’t worry. I am not concerned for her. I think labels are silly. I remember when I was being interviewed for a research study and I was asked how I felt about my daughter’s “exceptionality” and I said “Excuse me? Her what?”. “Exceptionality” she repeated. That’s what they are calling it now. I laughed at such a desperate attempt to not offend. I am comfortable with hearing loss, deafness, disability, exceptionality whatever you want to call it. It does however mean our calendar, our budget, and even major life decisions like where to live will look different over the next few years because of this.

Hearing that my daughter has hearing loss is so different this time. I continue to process a myriad of emotions. On the one hand Elle’s hearing loss is mild. It’s complicated and I won’t go into all the details, but that’s good news. SJ’s hearing loss was profound. At least by the time we found out it was. When Elle had her appointment J explained that we speculate SJ had previously had more hearing, but then lost it over time. He asked if that could happen with Elle. The audiologist said it certainly could. That’s a hard fact to swallow. I don’t know if I should assume the worst and hope for the best? I have a lot of questions for her ENT.

On that note, the fact that we already have an ENT, an audiologist, a school, and a support group in place is awesome! With SJ I was given a stack of books for parents of deaf children and I felt completely overwhelmed. This time is different. I have a newborn instead of a toddler. I live in Ohio rather than Kentucky. I will be dealing with hearing aids rather than cochlear implants (at least for now). I feel fairly equipped, but also uncertain.

I have so many questions and other concerns, but I will have to wait another month to even talk to certain specialists. The day of Elle’s hearing test was the first day of Christmas break for the kids and we went right into all of the Holiday gatherings. First was celebration with my family followed by a week of festivities with my in laws. That was actually good timing though because I had no obligations and have been pretty much distracted by Christmasy things. However now we prepare for evaluations, testing, hearing aids, and therapies. It’s really happening. I am doing okay, but I am also a bit of a basket case from time to time. Elle on the other hand is doing great. She is such a precious treasure and we all adore her.

I know many of my family and friends are going to be finding out about this for the first time. I didn’t know the best way to deliver this announcement. It’s not dreadful news like a terminal illness or something, but it’s not like announcing a pregnancy either.

I hope you’ll bear with me as I navigate this new journey because it might look similar, but this time is different.

By Natalie|2023-06-12T06:26:11+00:00December 28, 2015|Babies, Hearing Loss, My Life, Our Hearing Loss Journey|22 Comments

Awaiting the ABR… Again

Elle is now 5 weeks old. She had her one month check up this week and is now 10 pounds 22 inches. The Doctor has been extremely impressed by her growth. Here is a side by side from her first check up and her last which were taken exactly 4 weeks apart. Elle looks completely different.

She is really filling out. No more newborn diapers or clothes for her. She has outgrown them!

There aren’t a lot of updates. She smiles now, but it’s not often.

She still sleeps about 18 hours a day.

I did a little impromptu photo shoot of her on her 1 month birthday.

I love that she was born close to the holidays. I think about how our birth story was so unconventional and I wonder how Mary must have felt and what her birth story would be like (of course we know the story, but not from the perspective of Mary).

We have an important appointment coming up and I would love it if you would be in prayer for us during this time. I previously mentioned that Elle failed the newborn hearing screening. The first time they came in with the equipment to test her the tech lady had a unique personality and was rowdy. I think she was trying to be nice. For most people this is just a routine test. No reason to get too serious, but all kinds of faculty were coming in and out and joking around and making a racket so Elle woke up and was fussy for the second half of the test (the left side). So she failed on the left, but the boisterous tech assured us it was because she woke up and that’s all it was.

The next day a younger new tech came in while it was still dark and quiet in our hospital room. I asked if she could shut the door and maybe hang a do not disturb note or something. She looked at my like I was crazy, but at least it was a much more subdued and calmer atmosphere. She even let me nurse Elle during the test. Again Elle passed on the right, but she couldn’t even get a reading on the left. It was like it wasn’t hooked up right so the tech tried to adjust it. She never was able to figure out what was wrong so she said that she failed and she would refer us to an audiologist. I was hormonal, and tired, and obviously stressed so I sternly proclaimed “We have an audiologist. This is a big concern for us and I’d like to know what is going on” Then J and I asked more questions about the test. None of which she could answer. She looked really intimidated. She had never even heard of Connexin 26 which is the genetic hearing loss that we have in our family. It is the NUMBER ONE CAUSE of sensorineural deafness so you would think someone that tests for hearing loss would have some familiarity with it. I then asked to speak with a supervisor and did, but she mostly just had some paperwork for me.

I immediately called SJ’s school and talked to our audiologist. She made me feel much better about the whole thing and gave me advice on how to proceed.

I know a lot about hearing loss and I think Elle can hear. I feel very confident in that. I guess you could say we know she can because the test confirmed it on the right side. With Connexin 26 it is highly unlikely that it would be unilateral (only on one side) so chances are she is fine.

However, this whole thing brings up a lot of tender memories for me. We have to go through all the same testing that we did with SJ and we have to keep her asleep for 90 minutes which should be easy considering what I said about her sleep, but it’s still completely unpredictable and out of our control so that stresses me out.

I cried when I called and scheduled the appointment. I have openly expressed to people how I know that she is fine and it’s just a machine error which happens all the time. And hearing children do fail this test A LOT.

However, lately there have been other thoughts popping into my head that make me wonder why it was the left ear BOTH times. Maybe just a coincidence? I mean if something is going to go wrong with the test you have a 50/50 chance that it will be on the left side. Still part of me wonders if she has another problem on that side that doesn’t even have to do with Connexin 26. Or what if her hearing gets progressively worse, which can happen. What if she is one of those rare cases?

Luckily, most of these frantic thoughts didn’t really come into my mind until this week so at least I haven’t spent the past 4 weeks panicking.

Please pray that we get some answers with this test. I do have a peace about it, and all in all I think everything is going to be okay, but I hate the idea that if she doesn’t sleep we have to drag this out for another month or so. That would be terrible. I just want this to be over with.

The reason I titled this “Awaiting the ABR… Again” is because I wrote another post about 3 1/2 years ago when I was waiting for this same test for SJ. You can read “Awaiting the ABR” to find out what the test is and what the waiting period was like for me in that time when I didn’t know for sure whether or not SJ was deaf. It feels like a world away.

Thanks for all the prayers and support. Of course I will keep you posted.

By Natalie|2023-06-12T06:29:15+00:00December 16, 2015|Babies, Hearing Loss, My Life, Our Hearing Loss Journey, Pregnancy & Birth|4 Comments

Living in Holland (Thoughts From a Special Needs Mom)

If you have a child diagnosed with some form of special needs then you have probably come across the “Welcome To Holland” essay by Emily Perl Kingsley. Basically it compares the shock of finding out your child has a disability to the feelings you would have if you planned a trip to Italy, but landed in Holland. The idea behind the whole analogy is that Holland isn’t BAD it’s just different and may take time to readjust your original plans and learn your way around.

The comparison applies to my situation well. I thought I was raising a perfectly “normal” (for lack of a better word) child the first two years of her life before I learned that SJ was deaf. I was speaking Italian, bought all the guide books for Italy, and really believed I was in Italy until that point which I consider my crash landing in Holland.

I have known about SJ’s hearing loss for 3 years now. The 2 1/2 year mark was a significant threshold for me because at that point I knew that my daughter was deaf longer than I knew her as (I thought) a hearing child.

It really does get easier. I have an appreciation for Holland. I’ve met lots of new friends here and learned so much. I’ve got the Holland guide books and maps now. I might as well have a tshirt and bumper sticker declaring my loyalty to Holland! There are moments though. There are moments you remember this wasn’t your original destination. I am being candid because I know I am not the only special needs mom going through this.

For example I have never babied or coddled SJ for her disability. She can truly accomplish anything she wants to do. She has been learning to swim this summer and let me tell you she is a champ. She fearlessly tackles this mission with great passion and fervency. She does so without the use of her cochlear implants so she is completely without hearing the whole time. I try to sit by the pool for a little break and she will tug on me and sign “Practice! Practice! Mom, practice.” I see her going after it with all she’s got and when she comes up for air with the splashes of water blurring her vision I scream “Good job. Take a breath. KICK! KICK! KICK! You’ve got this!” but I know she can’t hear me. She can’t even read my lips or see me with the conditions that we are working with in that moment and I have felt helpless. Similarly, when my three kids are going to sleep (they share a room for now) I lie there in the dark with them for a while and Ezie says he wants to pray. After he finishes he wants his sister to take a turn. I tell him SJ can’t hear us right now because she doesn’t have her implants. If it were light it would be different because she reads lips so well, and with her implants she is just communicating non stop, but the next night we went through the same thing and Ezie said SJ needed to get her implants. He’s two and just starting to verbalize more himself, so it’s kind of heart breaking to hear him process all of it for the first time. Add to some of these emotions that SJ is starting kindergarten and she can’t go to the same school or have the same opportunities as her brother and it’s just another layer of Oh yeah, I was supposed to be in Italy.

I know I shouldn’t feel guilty sharing some of these stories, but I do because we are so blessed and I love SJ exactly as she is. We are to the point now that if I try to think of what life would be like if she weren’t deaf I absolutely can’t wrap my brain around it because it’s a part of who she is. It’s like trying to picture what she would be like if she had been a boy. That’s just not who she is and I don’t want to change a thing.

As far as the little bumps in the road, we can purchase special gear that she can wear in the water to swim with her cochlear implants on. We can make sure everyone takes a turn praying in bed before SJ takes her implants off. She goes to a phenomenal school, and will have tons of wonderful experiences this year in Kindergarten. These are really minor things, but as in the Holland analogy it’s different and it takes some getting used to.

I have a friend whose son just crossed the one year mark of being a double amputee and that family has the most incredible testimony.

I have loved cheering them along as I have watched all that their little man has achieved and I can’t wait to see what comes next. They have a caring bridge site where they post updates about Jude’s progress. Reading some of their experience has been like reliving my own. Even though SJ has artificial hearing and Jude has artificial legs there are just TONS of similarities.

I don’t know it all (that’s for sure) but since I feel like I am a couple years ahead on this journey I shared with my friend what I have come to realize after being thrown into the world of special needs parenting. I wanted to encourage her that just because it’s been a year doesn’t mean that you should be completely adjusted and move on. It’s been 3 years since SJ’s diagnosis and we are still in the transition stage. I look at the timeline like this Old normal, shock, transition (or adjustment, or adaptation), and then new normal.

We spent just over two years living in the old normal, there was probably a year of living in shock and just doing my best to stay afloat. The last two years have been transition and we’ll be here for a while. I feel pretty darn close to “New Normal” but we still have such a long way to go. I feel like for us that will be when she goes to main stream schooling. I’m sure it looks different for everyone and more experienced moms could give a lot more insight into all this and the multifaceted layers. I am just learning, but this is my message for those in similar situations. Don’t feel like you have to rush into coping or adjusting. It’s going to be uncomfortable at times for some more than others, and somedays you are in Holland with a map from Italy. That’s okay, you will get there. I will get there. Our precious babies will get there and boy will we have stories of all the adventures we’ve had!

By Natalie|2023-06-12T06:26:27+00:00August 31, 2015|Cochlear Implants, Hearing Loss, Motherhood, My Life, Our Hearing Loss Journey, Parenting Tips, Special Needs, Uncategorized|5 Comments

Summer School

I have been blown away by SJ’s recent progress with speech. This time a year ago these were the new phrases she said

Daddy has keys

I want chocolate milk

Snack for later

These short sentences were huge breakthroughs for her at the time!

Aiming high in this photo from last summer.

These are the latest things I have heard her say. Of course there are countless others, but these are ones I managed to write down.

Daddy, I want shut this because I am hot. This was referring to the sunroof.

Mommy I found missing piece under bed. This was referring to a puzzle.

One minute. I am trying to put all stuff in my bag.

Ezie won’t get out of bathroom mommy! There are two people in bathroom! Two people is bad choice.

That not kitty cat. That Hello Kitty. See he has a bow on his head and he has pants on.

There mommy car over there next to daddy’s car.

I like go to Chuck E. Cheese with my family.

Obviously she is still leaving articles out of sentences, but we are moving right along.

Her preschool graduation program. Some children are wearing a cap and gown because they were graduating from the school and will begin mainstream schooling.

She had less than a week off before starting summer school, but the summer program is only half day and at the end of last week she came home wearing a straw hat with a lei and drinking the milk from a coconut.

The end of beach week at summer school.

So there is no shortage of fun. It’s like camp for her.

In other exciting news she is officially a Kindergartener! I honestly didn’t know how they would place her considering her speech percentile is so very low, but she will be in a credited kindergarten program at her deaf school. The curriculum will certainly be modified, but she has already transferred to the kindergarten classroom with her new teacher. So far she really likes it.

A silly pose in front of the sign at her school that she has attended for just over 2 years now.

I have had some total tear jerker moments lately hearing her talk to other children at the park, or even just saying the title of the movie “Frozen” and the names of the characters “Elsa, Anna, and Olaf”. There was a time not that long ago that only dreamed of her being able to say the names of movies or things that she enjoyed. She loves to talk about the baby and how mommy is growing and growing.

I’ve had so many people give me such encouraging reports about how they heard her talking for the first time or just acknowledging how far she’s come. It’s been another big wave of vocabulary. It does tend to come in waves and summer is usually a plataue, but I am really, REALLY hoping she continues to ride this wave and show growth throughout the summer, even as therapy slows down.

I’ll end with the best compliment of all which comes from my 4 old niece who will be 5 in a couple weeks.

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SJ with her cousin last weekend.

This is what I was told she said to her parents after spending Sunday afternoon with SJ

“Guess what!? I almost forgot to tell you the good news!

SJ can talk almost as good as me now. She says hi and can say other things sounding just like me!”

Little kids don’t sugar coat details, we know that. There is no doubt that at 5 years old other children will notice that SJ is different, but to hear her cousin give this update is legit. She is slowly, but surely starting to catch up.

I curled her hair for church and it lasted two seconds of course. It was already flat by the time I took this photo.

By Natalie|2023-06-12T06:34:54+00:00June 19, 2015|Speech Therapy, Uncategorized|8 Comments

SJ Latest Vocab Explosion
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SJ Latest Vocab Explosion

Hearing Loss, My Life, Our Hearing Loss Journey

SJ Latest Vocab Explosion

This was one of my most recent updates about SJ’s progress in her cochlear implant journey, which was posted August 12, 2014.

“I feel like we have been at a stand still over the summer. I always keep a log of new words and phrases that I notice SJ saying and the last time I did an entry was the two months ago. Maybe some of it’s because I have been too busy to notice, or maybe it’s because she was on vacation and out of school so she is just plateauing. Or perhaps this would be a slower time anyway. These burst of vocabulary breakthroughs do tend to happen in waves.”

I tried to stay positive, but when I know SJ has so much catching up to do it is hard to see so little progress. Fortunately we did have another wave of new words come last month. She was suddenly communicating so much I could barely keep up.

One day in September I dropped Z off at Sunday School, but since there are no classes for my youngest children I just take them to have donuts with my mom (their Me’me’). I told my mom that was one time I was a little grateful that SJ couldn’t talk too much because if she told her brother he was missing donut time he’d be upset.

It wasn’t but a week later that we were going to do our donut tradition and SJ piped up “Donuts with Me’Me’?” I couldn’t believe my ears. She wasn’t copying something I said, she just had the language to say it herself and I was blown away. Although it was also a little comical since I had been trying to keep our donut outing a secret!

Another time shortly after that I was trying to convince her to wear a headband.

She used to wear headbands all the time to keep her Cochlear Implants on until one day she decided she didn’t like them anymore. So now we keep the CI’s on her ears with special tape. It’s technically used for wigs and toupees. Anyway, I prefer the headbands for various reasons so I thought I would see if she would switch back, but she clearly told me

“I don’t like headband. I like tape.”

This is a big breakthrough for her to be able to express her desires so clearly. It certainly alleviates a lot of frustration for both of us.

I have just a few more stories for you, and for me actually because I want to look back this time next year and remember what her sentences were like.

One night SJ brought me a package of Oreos and with a sheepish grin she lifts up a finger and says “One?” Then she says “Not two. Not five.” As she shakes her head. How can I resist? I tell her okay then she immediately asks “One for baby Ezie?” Again I was just amazed at how much she was able to communicate and it certainly is hard to turn down requests when she does!

These last two milestones were SO exciting for me and I will never forget them. You know how you can’t really see your children grow, but sometimes you see growth? Well, maybe that doesn’t make sense, but that is what these were like.

J is in school a lot so SJ always asks “where daddy?” and I tell her “Daddy is at school” One day she didn’t even ask where daddy was because she knew the routine by now, she simply said “Daddy with teacher?” I turned around wondering if I heard her right. Did you say “Daddy with teacher?” and she said yeah. Again I was stunned, because she had put the pieces together. I never said daddy was with a teacher, but she knew what school was and that there were teachers and that daddy was probably at school.

A similar breakthrough happened when J was calling my name from the other room and I heard SJ say “Mommy?” and he said “Yes, I need mommy. Can you get her for me?” She said “Okay”(which usually sounds like oh-hey) and I heard her little feet pitter patter down the hall. I was excited to see what she would do because this wasn’t the norm at all. I knew for sure she wasn’t going to say Mommy, daddy wants you. but as she approached the doorway she declared with confidence. “Mommy, daddy talking.” I said, Okay! Thank you! and squeezed her so tight she was probably wondering what in the world the big deal was.

There have been lots of little connections happening. Phrases like “I need help pajamas” and “That mommy’s coffee” and “I will hold it”. Her teachers and therapist are much better at explaining exactly what all of the milestones are and the new goals of syntax, phenomes and receptive learning. All I know is that things are clicking in a new and exciting way. She has gone from just learning vocabulary, labeling, and reciting to actually understanding and communicating her thoughts and needs. We still have a long way to go and there are many times we just flat out can’t understand her, but I am happy with the recent progress and it just makes me more excited to see what comes next!

By Natalie|2023-06-12T06:26:43+00:00November 19, 2014|Hearing Loss, My Life, Our Hearing Loss Journey|4 Comments

A Progress Report
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A Progress Report

Our Hearing Loss Journey

A Progress Report

SJ’s last day of school was on Tuesday. She goes back again on Monday for summer school though. Speaking of which, I have a praise report about that. Last year we lived outside of Ohio so we had to do a great big fundraiser to collect the $800 she would need for the program. You may remember that. This year since we moved we were supposed to get funding through our counties developmental disability services. Turns out they ran out of money. I didn’t even know that could happen. Panic struck, but I just did not feel led to try to get all of the money on my own like I did last year. The school helped us apply for some grants and today I got an email saying it was all covered through the Building Blocks 4 Kids foundation. I will share more about that later.

We went through some tough times here recently with SJ not wanting to wear her cochlear implant at home. I am fine with her taking a break her and there, but this was starting to happen far too often. I talked to the team at her school during one of my parent education sessions and I hate to say I shot down their ideas left and right, but I did. I wasn’t trying to be difficult, it’s just that I had tried it all before. Then her teacher mentioned perhaps decorating the implants or letting her pick out her bows and head band. She knew that SJ enjoys dressing herself and showcasing her own sense of style. I told them I would give it a try. Every set of implants comes with a cover that you can put on the outside to add some flair. Long story short, we’ve been alternating covers and it has helped a ton! She isn’t wearing the headbands as often and that can be a hassle, because her ears are so small and the devices so big, but I am just glad she’s wearing them.

I feel very encouraged as we close the chapter of this school year. This is the first time she was able to start and finish a program. After her diagnosis we went from doctor to doctor and therapist to therapist. There was a lot of change and adjustment in that season. Now that we have settled on this school for her we are staying. It’s like I said about not moving from our apartment, it’s the slightest sense of stability. I like that.

As I look back at where we were last year tears come to my eyes. We were still working on the idea of listening and responding to her name which is something I don’t even think about anymore. At the end of school last year she had about a dozen words, now she has hundreds. I can’t keep track, and every time I turn around I hear her say things I didn’t realize the she new like “basket, shovel, scoot back, tomorrow…” The latest sentences she has said completely on her own that have taken me off guard are

Daddy HAS keys

I want CHOCOLATE milk

I NEED help WITH socks

SNACK FOR LATER

Mommy sit RIGHT HERE

SJ PICK ONE book

TWO WHITE car ONE BLACK car

I DON’T like chicken NASTY (compared to “no chicken” or just a complete melt downa couple months ago)

I capitalized some of the words that she recently added.

She is doing great, but I have never once thought that it was all happening quicker than I expected. I don’t take any of her progress for granted, but it feels like a “slowly but surely” process. I am so glad that she has ended this school year on a good note though. It’s encouraging and I need all the motivation I can get to cross the bridge of the summer.

By Natalie|2023-06-12T06:27:26+00:00June 5, 2014|Our Hearing Loss Journey|1 Comment

My New Favorite Deaf Celebrity
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My New Favorite Deaf Celebrity

Hearing Loss, Uncategorized

My New Favorite Deaf Celebrity

You aren’t going to see a ton of deaf people in the media. So whenever I see someone on TV with hearing loss I’m instantly drawn to their story. Many of you know I watch Switched at Birth for one reason- the ASL. So when I was on the ABC family website and I saw that the character Emmit, played by Sean Berdy was the weekly crush I clicked to get the scoop. Normally I wouldn’t care about some teenage pretty boy, but because Sean Berdy is deaf I was curious what type of hearing loss he has. Was he born deaf? Does he use ASL exclusively? Are his parents deaf? When did he begin acting? All I could do was laugh when I clicked on the link and it said “Sean Berdy is such a heart throb! He has gorgeous eyes, great hair, and a charming personality. That is why he is our new weekly crush!”

Silly me! I forgot their target audience is half my age and listening to One Direction. And here I was interested in this guy’s story or anything that he might have to say.

Then last August my best friend mentioned one of the contestants on Project Runway had an interpreter and a cochlear implant.

Say no more! I immediately started following the show and when they highlighted him on the Lifetime website it actually did elaborate about his life story this time. So that was neat.

Fast forward to this year and I saw this Duracell commercial, which features Seahawk’s player Derrick Coleman and talks about the struggles he had growing up deaf and playing football.

http://www.youtube.com/watch?v=u2HD57z4F8E

I couldn’t hold the tears back when I watched it the first time. I say first time because I have watched it many times. It’s very inspiring. On top of that he responded to a letter that a little girl wrote to him about how she looks up to him and how he has overcome similar challenges in his life. So from that point on I was rooting for the Seahawks, and that was before they were in the SuperBowl. Granted, Richard Sherman’s cocky rant was enough to make me want to jump ship, but as far as I am concerned Coleman’s humility, even in the midst of all the publicity he has gotten, is enough to make up for it. If you go to ESPN.com you can find the front page story with more details about Coleman’s journey. If you go to his Facebook page you’ll find his most recent status update that says FAITH in all caps followed by many exclamation marks and the scripture from Hebrews 11:1-3. On top of all of that, he gave a shout out to a boy that graduated from SJ’s school a couple years ago and he even posted a link to help raise funding for him to get a special football helmet designed to work with the Cochlear Implant.

How cool to have a deaf role model playing in the Super Bowl. I’m not the biggest Football fan, but I’ll be rooting for #40 on Sunday! And to Coleman, in his own words; No Excuses. Play Hard. Have FAITH!!!

By Natalie|2023-06-12T06:29:51+00:00February 1, 2014|Hearing Loss, Uncategorized|3 Comments

A Recap of the First Year with Cochlear Implants
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A Recap of the First Year with Cochlear Implants

Cochlear Implants, Hearing Loss, Our Hearing Loss Journey, Uncategorized

A Recap of the First Year with Cochlear Implants

It’s been a year since SJ had her cochlear implant activated. There have been a lot of highs and lows, but I feel like FINALLY, we are getting some momentum and everyday SJ is saying new words and responding with a new level of understanding. In order to document what’s happened this past year I wanted to do a little recap. And even though SJ’s situation is not typical, especially compared to a baby diagnosed at infancy, I still hope that this time line could be informative for parents of deaf children researching what to expect. Here is the progress from SJ first 12 months of hearing beginning at age 2 1/2.

1. On November 21, 2012 SJ cochlear implant was activated. They call this the hearing birthday. It was not the party I was expecting. She barely responded and she did not want to wear it. I tried to be positive and I didn’t even expound too much about my disappointment on my blog, but I actually cried a lot after we left the audiologist that day.

2. SJ turned to her name for the first time, and made the B sound. We also had an appointment where the volume was turned up on her implant.

What may look insignificance was a huge milestone for SJ. It was exactly 6 months a

3. We enrolled SJ in a deaf school hours away and made plans to move along with scheduling the 2nd surgery so that she could be bilateral.

4. February was a big month for SJ because even though the surgery was scheduled the audiologist was not on board (because she is, in her words, conservative about these things) and we had to write to her respectfully disagreeing with her decision. We had run-ins with insurance as well, but following the advice of SJ’s ENT, teachers, therapists, and our own intuition, we pushed through until we could get

was going to be best for our daughter and had the surgery approved.

After all that we geared up for surgery, and it was successful.

At this point I was able to see a little more response from SJ in terms of hearing, but not much and her school was concerned because their professional diagnosis showed that she was not even detecting speech sounds and needed a new mapping. And they were right!

5. At the end of February SJ was activated on her left side and hearing bilaterally for the fist time. Despite the direct requests from the school and ENT, SJ’s audiologist still hesitated to add much volume to SJ’s implants (again she was self proclaimed “conservative”). In the meantime SJ’s was healing well and we were becoming more comfortable with the cochlear implant devices.

6. The school volunteered to have their audiologist take over with SJ’s mapping and it was like NIGHT AND DAY! It is so important to have the right mapping (in layman’s terms this is basically the setting/volume, it’s a complicated process). When SJ had her CI’s remapped in March she was really hearing most sounds for the first time and it was amazing to watch. She even said her first word, “up”

7 & 8. SJ continued to grow leaps and bounds once she had the proper mapping she was consistently turning to environmental sounds and to her name. She started saying uh-oh, more, and some animal noises on her own and many other words with prompting.

9. We raised money for SJ to be able to go to summer school and her vocabulary continued to grow to up to 20 words. Some days were better than others as far as communication related frustration and cooperation with even wearing the implants, but we were excited about the upcoming school year where SJ would be going full time.

10. On SJ’s first day of school we had to pick her up early to have a CT scan at the children’s hospital because her right implant was causing her pain. The scans came back fine, but apparently she had some shifting that is not traumatic, but does take a few weeks to heal before the scar tissue sets the device back into place. This was scary, but praise the Lord everything turned out fine.

11. At this point between IEP meetings, a research study group, and observations. I felt like things were at a stand still again. It’s hard to see your child be so far behind her peers, but luckily I now know that it gets better.

12. In October SJ had a breakthrough. She can now refers to several people by name and she knows over 60 words. Everyday I hear her saying new things and I really, Really, REALLy believe that the worst is behind us this time.

*I am going to get a better video up soon! One where she is talking on her own without being fed all the answers!

By Natalie|2023-06-12T06:22:57+00:00November 22, 2013|Cochlear Implants, Hearing Loss, Our Hearing Loss Journey, Uncategorized|3 Comments

A Little Cochlear Panic Attack
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A Little Cochlear Panic Attack

My Life, Our Hearing Loss Journey

A Little Cochlear Panic Attack

I haven’t done an update in a while reporting how far along SJ is with new words and hearing milestones. It’s been a bit discouraging lately. I have had a hard time getting her to keep her CI’s on. She does fine at church and school, but anywhere else it is an everyday battle. Then add to that the set back of her having the pain on the right side (which is gone now, praise God) and then on Sunday one of her processors looked like it was broken and then there are the times that they are lost and it’s always stressful! Those little flashing magnetic “earrings”are by far those valuable things we own monetarily.

In fact even if you added up all of our assets it still wouldn’t be close to the worth of her processors.

Imagine how I felt yesterday when the kids were playing on the balcony and SJ had her headband off. Then I saw her looking through the cracks of wood down to the balcony below us.

There are some spaces between the planks and she thought it would be fun to drop her barrette, headband, and each processor individually through the cracks. AND it appeared that one of them landed in a bowl of water, which meant I had 30 minutes before that thing became worthless. To say I freaked out is probably an understatement. I don’t remember exactly how I reacted because that whole moment felt like it happened in another dimension.

The first thing I needed to do was just simply ask our downstairs neighbors if I could retrieve it. So I bolted down the stairs and started knocking and then banging on the door. No answer. So I went back upstairs and tried to think like Tom Cruise’s character in Mission Impossible. Could I climb down, not without dying. Would a broom reach, not even close, I tried. Think, think, think! Call the landlords’s? I felt uneasy about our downstairs neighbors. I think I can safely explain without them finding out because the chances of them reading a mom blog, especially mine, are slim to none. Anyway, the downstairs neighbors have a Pit Bull, his name is Ozzie and if the dog could talk he would probably curse like Ozzie just like his owners do. None the less I had no time to loose. I scribbled out a note along with my phone number and I went back downstairs to tape it to the door. The door has a fuzzy black wreath hanging on it along with an eyeball welcome mat.
I know that some people decorate early for Halloween, but this might be year round decor for them. I snapped a pic with my phone because after my relentless knocking I knew I wasn’t bothering anybody.

Finally when I returned up to my apartment I had a stroke of genius and I remembered a giant paper clip that I could probably make a hook out of and we had some string from the recent pinata festivities so I had to basically make a fishing line. Because the processors are magnetic I was able to lower the metal hook down through the crack and it stuck right to the first one which was in the water.

Getting it back through the crack without knocking it off was the most nerve wrecking, but it worked. That was the biggest relief. Getting the second one was harder because it wasn’t a straight shot, but eventually after jerking the string up and down to cause the clip to land in different spaces I got it and at that point I was on a roll so I went for the hairband too. The kids were crowded around me watching as if it were a scene from the Sandlot (remember “I’ve got get that ball back. You don’t understand”). Except instead of a ball signed by Babe Ruth it was some cochlear Implants and instead of The Beast it was Ozzie (who luckily was not on the porch).

I told J the day that I have less than 3 major crisis/emergencies will be a good day and for the past week or so I’ve had some really bad days. All is well that end well.

By Natalie|2023-06-12T06:23:15+00:00September 6, 2013|My Life, Our Hearing Loss Journey|4 Comments

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