deaf – Messymom

My Personal Hearing Loss Story

This might be a bit of a bore, but I just got hearing aids and there are a lot of people shocked to learn that I have hearing loss. Shoot, even I am a little surprised in some ways. So here is the story start to finish.

When I was a little girl my parents took me in for a hearing test because it didn’t seem like I was responding as well as I should. At the time I was diagnosed with stubborn toddler syndrome. In other words there was no sign of hearing loss.

I never struggled in school or carrying on a conversation so the idea of hearing loss didn’t come up again. In high school I realized that I couldn’t hear really high pitches that my friends could hear, but that’s not a big deal.

When I was 20 (2002) I had a bad episode of vertigo and experienced ringing and stuffiness in my left ear.

I expected it to subside, but when it didn’t I found an ENT and had a hearing test done. Their report showed mild hearing loss, but I was told there was no remedy and to just play music to distract me from the ringing. It was such a discouraging consultation considering I had no insurance at the time and shelled out $350 for the exam. I just wanted some answers. I wanted help.

Fast forward about 10 years (2012) and my daughter SJ was diagnosed deaf.

Her hearing loss is genetic, but we were told that J and I are both carriers of the genetic mutation. So it’s recessive. We have no history of deafness in our families.

In the mean time my hearing seemed worse, but I put my needs on the back burner. I thought maybe I was imagining it because there was so much focus on hearing loss in our home. I was always misunderstanding people or not hearing them at all. One day my sister in law asked if I ever considered getting hearing aids. I dismissed it because compared to SJ I was hearing just fine. I was in denial.

However three years later (in early 2015) I bit the bullet and decided I would have another hearing test done. I went to a GP who referred me to an audiologist. The audiologist tested me in a sound booth and the results showed that I had moderate to severe hearing loss on the left and mild on the right. I had so many questions for the audiologist, but she had no answers. She said that I needed to see a different doctor. They told me they would call me and they never did. I could have followed up and been more assertive, but I had three children plus one on the way and again I put my needs on the back burner.

After Elle was born she failed the newborn hearing screening. I swore she could hear because she flinched and startled to noise. Yet she failed the screening over and over again. Sadly, I knew this meant she would eventually be deaf like her sister. HOWEVER, the genetic test (which takes about 6 weeks for results by the way) showed that her hearing loss is different than SJ! Her hearing loss is still genetic, but it’s generally a mild hearing loss. None of us saw that coming. The geneticist said the only way this is even possible is if either the mother or father also have this hearing loss. I voluntarily suggested that it was me. Basically between SJ’s DNA and Elle’s DNA they uncovered the missing link to my hearing loss mystery. So they ordered a genetic test for me just to be sure. I got it back a couple weeks ago and it confirmed that I do in fact have hearing loss due to genetic mutation (I know that sounds weird). I asked about why it didn’t show up as a real problem until later in life and so far no one has an answer for that.

Regardless, now that I had it in writing with DNA evidence I was ready to do something about it. I went back to the same doctor, and was sent to another doctor, and then to the audiologist and was tested AGAIN and FINALLY got my hearing aids. So even though it looks like this diagnosis and treatment came from out of nowhere it’s kind of been leading up to this point for a long time.

So that’s the back story. I have a daughter who is deaf, a daughter who has mild hearing loss, and between the two of them I finally recognized that I have moderate hearing loss.

Of course everyone wants to know if it’s related to gender at all, but it’s not. That part is completely coincidental.

I am still getting used to the devices, but I do feel like I can hear a lot better with them. That does not mean that I hear perfectly though, so please be patient with me if I am not understanding or if I have to ask you to repeat yourself. Thankfully I have been reminded by several professionals that no one hears perfectly so I don’t need to feel bad.

This whole hearing loss journey has been a wild ride, but I at least we’re getting somewhere.

By Natalie|2023-06-12T06:19:00+00:00July 1, 2016|Hearing Aids, Hearing Loss|3 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

Kindergarten Success!

I’ll admit to being apprehensive about the day SJ would go to Kindergarten. She has always been so far behind in speech (due to her late identified hearing loss) that I just didn’t know if she would even be ready in time. At the end of her IEP meetings they always ask if I have any goals that I would personally like to add to her plan and I would always say that I want to reach academic goals like knowing the alphabet or being able to count past 10. It’s been a big mountain in my mind. Last evaluation report I received she was at the level of a 3 year old with her speech. My concern was how on earth she would be able to not only catch up with her vocabulary and articulation, but to learn reading, writing, and mathmatics at the same time!

Well, it’s been a little less than 2 months since her first day of Kindergarten and I have been completely blown away with her progress.

I know I sound dramatic, but I really cannot express enough how amazed I have been with what she has learned in such a small amount of time. It is is unbelievable!!!

We are talking about a girl that has made great strides in speech, but she rarely talks in complete sentences, doesn’t know the ABC’s (the song, or the order, but she does actually recognize them) and a lot of the words she does know are extremely difficult for her to enunciate. I am not undermining how far she has come, but I didn’t see her being ready for Kindergarten work at all, until she came home and completely proved me wrong!

In the past 8 weeks she has learned when her birthday is, she is really close to knowing all of the months of the year and days of the week. She learned her city and state and how to spell it! She has come home talking about President Obama, The White House, and saying the pledge of Allegiance! In this video she leaves out “for which it stands”. It’s hit or miss, but she’s almost got it! *Never mind about the video for now. It’s too large to post, but I’ll work on that.

She knows several sight words and last night when she did her homework she was reading simple familiar sentences on her own and she had to write the missing word with multiple choice sight words. She did the whole lesson on her own (other than one written backwards, which is another topic entirely. I’ll have to tell you all about it sometime)

After she finished her assignment she said “I tell teacher I do homework by myself. Mommy, not help me.” I looked her and said “Yeah. That’s right” and she said “You proud me.” It wasn’t a question, it wasn’t Are you proud of me? She said it as a fact, because it’s true. I am proud of her. I am so so proud of her. I just about cried in that moment. She has to work twice as hard just to get to the starting point, but she’s doing it.

I was going to do a post about this anyway, but it’s perfect timing because Ohio Valley Voices (SJ’s school) has just a couple days left in a competition to win $10,000 as one of Cincinnati’s favorite nonprofits. They are only a few hundred votes behind first place. It’s easy to vote and it would mean so much to me, SJ, and all the people impacted by this incredible school.

Go to moment.com> Choose Cincinnati> Fill in your name, email, business name, and phone number> Choose Ohio Valley Voices (I think it’s the 6th one down on the list)>click VOTE. It takes seconds to complete. The short form will ask for a business name. I don’t even know what you are supposed to put there, but I just put OVV, so feel free to do the same.

Thank you so much for supporting such a wonderful cause. I can’t guarantee that we’ll win, but it sure would help the school if we did!

This has been the best school year so far. I don’t know why I ever doubted.

By Natalie|2015-10-14T15:14:16+00:00October 14, 2015|Schooling, Special Needs|0 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

The Deaf Elephant in the Room

All of my pregnancies and deliveries have been just about textbook, but there is one aspect of my pregnancy that is unusual.

It’s not something I want to make a big deal out of all, but I feel like it should be okay to acknowledge and talk about openly. The proverbial elephant in the room if you will.

My entire life I have been a carrier of a genetic mutation called connexin 26 and so has my husband, but we never knew it until three years ago. You may be a carrier of some kind of genetic abnormalities too. The thing about being a carrier is that it doesn’t affect you. From what I understand we all have genetic abnormalities. I believe it is approximately 1 in 50 people that have Cx26, if I remember correctly. I can’t seem to verify this information online so don’t quote me on that statistic. Anyway, it’s not all that uncommon, but like I said carrying only one copy of the gene doesn’t effect you, however if you have a child with someone else that has a copy of that gene you have a chance that you will pass one gene from each of you to that child. If the child has two copies of the mutated gene then they will be deaf. There are a lot of diseases and genetic abnormalities that work this way, so you may be familiar with the science behind it already.

Here is how it works when you have Connexin 26.

We have a 1 in 4 chance of having a child that gets two copies of the normal genes which means no genetic hearing loss at all, not even carriers (as shown in blue).

There is a 2 in 4 chance of having a child that receives 1 copy of the genetic mutation (shown in purple).

Lastly we have a 1 in 4 chance that the child will receive 2 copies of the genetic mutation and be deaf (shown in red).

I wrote all about it here on the blog when I first found out.

We never suspected that SJ’s hearing loss was genetic because we had no history of deafness in either of our families. She had testing done just before my due date when I was pregnant with Ezie. I remember talking to our speech therapist saying that I didn’t know if I wanted the results before the baby came because if it was genetic then I would be worried. They assured me that I did not have to hear what the results were until I was ready and it could wait. My response to that was, yeah right I am not going to have the patience to wait one extra second for an answer! I was just too curious about how all of this happened. In the end the problem took care of itself. Ezie was born passing the hearing test and then about a week later I learned of our genetics so I didn’t have to worry.

I say all of that because this is the first pregnancy where I am well aware of my odds. This child could be deaf and I know it. In fact I know lots of families from SJ’s school that have proven that it doesn’t really matter what the statistics are. The chips will fall where they may (if that’s how you want to look at it). I know a Cx26 family where 2 of their 3 children are deaf, one where 2 of 2 are deaf, another that has 3 of 4 even! So even though J likes to joke that we have our 1 out of 4 so we’re done, it obviously doesn’t really work that way.

It’s nice to have other families in the school that I can talk to because they’ve been in my shoes. I know one mom whose first two children were deaf and the last one was not. She tried to make nothing of it, but she distinctly remembers her last baby going berserk in her belly when the fireworks were going off on the 4th of July and she felt like the baby must be able to hear. She was right. I know another mom who said that with her 2nd (out of 3) who was deaf she didn’t have any clues until after the baby was born, but she could tell almost immediately after knowing what to look for with her other two.

Honestly, it’s not something I think about too often. I am going to be fine with it either way, but of course we would love it if the extra challenge of hearing loss was not something that this child or our family has to face. I was reading recently in the updates about the baby that her hearing is fully developed now. The book encourages you to talk to your baby and play music for your baby. It says that the baby will be able to recognize our voices when she is born. I paused in that moment and just allowed the emotion to well up into tears.

We do talk to our baby girl, and again I want to stress that Connexin 26 is not something I focus on, but the fact is- it’s a possibility. It’s information I never had to face when I was pregnant with the other three.

Who knows what will happen. The irony of all this is when SJ was a baby we had her vision tested because Z had such totally unexpected vision and eye problems when he was a baby that he actually had to have surgery. There we were. worried about her eye sight when it turns out that she had hearing loss the whole time! So the moment I think I prepare myself for one thing a completely different issue arises. All I know is that each one of our children are hand crafted by God. They are fearfully and wonderfully designed and he knows each of us in the womb. I put all of my trust in the Lord and I have a peace about it. I really do.

We will have the standard newborn screening at the hospital just like we did with Ezie. I probably won’t announce it right off the bat if there are any concerns. I just want the initial focus to be on the baby and all the fun aspects of birth announcements. If we do have anything that needs to be addressed medically, we’ll tell everyone soon enough after our family has had time to process things privately.

So that’s about it. I know that was a lot of info and this is quite a personal update, but I did want to get it out in the open. As far what we can tell so far the sweet little baby girl is healthy and the perfect measurements for my due date (which is 99 days away). I am 26 weeks and almost done with the 2nd trimester. She will be here before you know it. We are overjoyed.

By Natalie|2015-08-17T18:44:39+00:00August 17, 2015|Special Needs|6 Comments

Building a Language
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Building a Language

Babies & Toddlers, Parenting Tips, Special Needs, Uncategorized

Building a Language

My first response before I even knew the degree of SJ’s hearing loss was to learn American Sign Language and teach it to her. I never thought it would be be easy, but my original expectations might have been a little unrealistic.

I was already familiar with baby sign language. I figured that if babies can learn to sign before they can talk then this sign language thing should be a breeze, especially for SJ because she’s brilliant! Come to find out it’s not that simple and it has to do with what I wrote about last week in “the Science of Language”. You acquire your first language by being immersed in it and it all happens easily and naturally. It’s called first language acquisition.

Babies hear MILLIONS of words before they ever say their first! They are observing, listening and mentally taking it all in for the first year or so. It’s a critical time developmentally. A deaf baby born in a deaf family is going through the same process except with a manual language. These children are typically raised in deaf culture so they see sign language happening all around them through their parents, teachers, and communities. One of SJ’s therapist says a child needs to see a sign around 100 times before it sticks. I thought I would simply show SJ some signs and teach her how to talk, but I am up against her natural urge of language acquisition which is to imitate, and for the past 2 and a half years she hasn’t seen any proof that the world around her communicates through sign language. Even now, I try to sign quite a bit, but we are still no where near the amount of oral words she would be hearing if she could. I’m not sure if I am making sense, but this whole first language acquisition thing was a recent epiphany for me. I just never thought about it that way.

Realizing your child is at square one trapped in world without language is a tough pill to swallow. It’s different than realizing that they can’t hear, it’s like Okay. Wow, we have a lot of lost time to make up. I explain it to people using Z as an example. Z started watching signing time and learning ASL along with us just a few months ago. As a 4 year old he quickly picked up around 100 words with minimal effort. I can ask Z What is the sign for share? and he’ll show me. The difference between him and SJ (besides that Z is 2 1/2 years older) is that Z already has a language. He knows what share means and has been learning about this word for years, now he is just attaching a sign to it. Just because SJ is deaf it doesn’t mean she is naturally more inclined to pick up sign language, it’s going to be harder for her because of the lack of immersion that I mentioned earlier. Anyway, that was my light bulb moment last month, but taking all this into consideration she is doing awesome. Sometimes I take for granted how much she does communicate with us through ASL. I need to document more of those precious first words that we are seeing from her.

On another note, we got the test results back yesterday and praise the Lord SJ’s brain and ear anatomy looks great. This means the hearing loss is not caused by any shocking unforeseen damage or malformations. That is really good news and now we can move forward with getting a cochlear implant, which is another big ol’ topic that I need to write about sometime. Just another curve on this windy hilly journey that we are on. There are ups and downs, pit stops, and speed bumps, but I am trying to take in all the beautiful scenery along the way and I wouldn’t trade it for anything.