The First Day With a Hearing Aid

Yesterday was my first day with my new hearing aid. As with most physical therapy treatments you have to press through a lot of challenges in order to get your body to respond in the way it is supposed to.

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So it’s been a rough 24 hours (minus when I slept). I knew there was skill involved in learning to listen with a hearing device because of having a daughter with a cochlear implant, but I assumed since I can hear and was born hearing that I would be exempt from such a difficult transition stage. I was wrong.

It is way more challenging than I ever imagined. When I put the device on yesterday it sounded like the world was on “speaker phone” mode and I don’t know if you have ever had your voice echo when someone else has you on their speaker phone, but it’s annoying and that’s how it was at first. Luckily, the initial reverb didn’t last too long. However everything still sounds like I am in a cave or something. It’s not natural. Have you ever talked while plugging your ears? If not, go ahead and try it. Do you hear your voice muffled inside your head? That’s what my voice sounds like all the time to me right now. I feel like I should be whispering because the sound of my voice is so loud. Some things sound close to normal, but there are thousands of small sounds that appear to be amplified. This is what happens when you go without typical hearing for a while (or have never had it). Your ears interpret all sound the same. It’s all coming at you equally and your brain gradually decides what is needed and what to filter out.

One example I can think of experiencing this phenomenon was when we moved into our first home which was a few miles from a railroad track. I will never forget that first night while our mattress was still laying on the floor of a room full of unpacked boxes. I thought the train sounded like it was running through our house and rattling my brains. It was SO loud. Oh no. What have we done? I thought. I wasn’t sure how we would ever sleep with the train and it’s notorious whistle so close by. However, the sensation didn’t last. I am not sure how long it took, I just know that despite the trains schedule and location remaining the same I no longer heard it. My brain filtered it out. That’s what is supposed to happen with hearing aids. I even asked my daughter’s audiologist for second opinion. Are you sure it’s not being amplified louder than it should be? I shouldn’t be able to hear the toilet paper slide off the roll. She assured me that my case was no different than the others and I just had to push through and allow my brain to file away that distracting background noise.

It can be debilitating though. This is what it is like running a simple errand.

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When you walk to the car you hear footsteps on the pavement and the grass. You hear wind (the way it sounds on a phone or home movie, very loud and distorted). You can hear your keys jingling and cars driving by.

As you get in the car you hear the door unlock, unlatch, and the seatbelt slides and clicks into place. You hear the engine start, the AC starts, there is lots of beeping and clicking with putting the car into gear or using the turning signal. And if you are thinking that you already hear all of those things, you are right. But do you always notice them? Do they distract you? Would you consider them loud and intrusive?

As you drive you have some coins in your console that keep sliding back and forth with every turn and slope. You grab a bottle of water and the plastic crumples and sounds ear piercing. You hear the cap unscrew, you hear the water go down your throat, then you hear yourself put the cap back on and return the water to the cup holder.

When you arrive at the store you hear the music which sounds normal, but the hangers on the rack sound extremely loud, a child is playing with a toy in the distance and you hear that. You feel like everyone that is talking is close by, but they are not. When you pay you hear yourself get out your wallet and all the items inside your purse starts banging up against each other like some kind of violent mosh pit. You hear yourself open the wallet, and I kid you not, you hear the debit card slide out of the wallet. You hear the beeping of the cash register as you normally would, but the magnitude of the stapler that the employee uses sounds like she must have used an industrial strength nail gun to combine two receipts. You flinch and hear yourself clasp your purse and grab the plastic bag which never stops crumpling loudly up against your leg.

Are you tired yet? I am. It sounds like I must be exaggerating, but everything I have read and all the professionals I have spoken with tell me this is just how it goes at first. This article form Starkey.com was really helpful and explains everything so realistically. They say “the learning curve can take anywhere from six weeks to six months. Success comes from practice and commitment.” So I am going to keep at it. Many of the articles I have read describe the adjustment time as tiring and disorenting which are the exact words I have used.

I go back in 2 weeks to see my audiologist and see how I am coming along. It may not be perfect by then, but it should be much easier. I hope. Feel free to ask me any questions. I have said so much, and yet there is so much I haven’t covered. Thanks for the prayers and encouragement.

By | June 15th, 2016|Uncategorized|2 Comments

Create Your Own Speech Therapy Book

When SJ was first diagnosed with hearing loss I was encouraged to create an experience book. Books are a great resource for speech delays anyway, but a book that has pictures and experiences that your child can directly identify with is even better.

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I try to make a new one every year so that we can expand on what she has learned. Here is a look at how easy it is to create and implement.

First Words

The first book was the most basic both in it’s design and the words that were in it. For this one all you need is

  • 4×6 photo album
  • Pictures of your child or objects that are familiar
  • Index cards to spell out the words you are encouraging the child to say

I chose words like hurt along with a picture of SJ with a boo boo

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or sleep with a pic of her sleeping.

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Trash is a word you may not find in your typical “first words” book, but trash (or some people say garbage) is a word we use everyday. That’s the beauty of customizing your own language book. You get to choose what to put in it.

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When we first made this book we weren’t even ready to start with saying words we were mostly working on the ling sounds like “Shhhhhh” for sleeping or “mmmm” for eating. Eventually she learned all the words and it was time to make a new, more advanced book!

First Sentences

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At this point she was learning the names of everyone in the family

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Along with the places we visited frequently (like the grocery store, museum, or school).

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When we started the book we kept it very simple and I had her repeat the words “Breakfast” “Lunch” “Dinner”. Eventually she started saying sentences and so we could expand to say “I see my teacher”. You can show a picture of a friend or a teacher, but it’s more meaningful to the child when they see their friend or their teacher.

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Early Reading and Abstract concepts

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She got this book for her birthday and she absolutely LOVES it. For this book I wanted to put in some sentences that she could read on her own because she is learning to read now. So for example “I love my family” is not expanding her speech because that is a sentence she has been able to say for a while now, but it’s simple enough to read. SJ loves to point to and sound out all the words.

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Then I included parts that are a little more difficult to read, but they are words and ideas that I hope she will start to have a better understanding of. For example, this page says “Sometimes I am sad, but I still obey mommy and daddy because that is a good choice. If I make a bad choice I say I am sorry. Mommy and daddy love me when I am happy or sad. They will always love me.”

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This can certainly apply to any child, not just special needs. My oldest son has recently requested that I make a book for him and I plan to do that next.

Now let’s look at the progression

If the first book says “School”

The next book says “I go to School at Ohio Valley Voices”

Then the next book says “I go to School at Ohio Valley Voices in Loveland Ohio”

It’s been so rewarding to watch SJ learn to communicate. I am really grateful that the idea for this was introduced to me and I hope it can be helpful to others.

Both of the hardback photo books shown here are from Shutterfly and I cannot recommend them enough. Right now there is a promotion going on for a free 8×8 photo book just like the one I’ve shown on here. The coupon code is ” SPRINGONIT “It expires tomorrow (March 22, 2016) so I know that’s not much time, but I will tell you that the Shutterfly website makes it so easy to throw these books together, so it doesn’t take much effort and they turn out beautifully. If you miss this offer you can catch the next one. Just Like Shutterfly on Facebook or sign up for their email to be in the know on the latest deals.

Your child will love seeing their pictures in print and you will love hearing them say all the new words. It’s a simple, but wonderful tool all the way around.

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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.

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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.

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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.

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

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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.

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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 | March 9th, 2016|Special Needs, 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.

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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.

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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 | December 28th, 2015|Babies, Hearing Loss, My Life, Special Needs|25 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.

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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.

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She still sleeps about 18 hours a day.

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

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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).

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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.


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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.

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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 | December 16th, 2015|Babies, Hearing Loss, My Life, Pregnancy & Birth|4 Comments

Mirrored Writing

Have you ever seen the servers write their name upside down at Macaroni Grill? I waited tables there for years and really had the backwards cursive signature down pat. It took practice though. It wasn’t like I just automatically write in reverse although sometimes it looks like my daughter SJ does.

 

left handed mirrored writing

She hasn’t been writing for long, but in the past couple years I have noticed a trend where she not only writes from right to left, but the letters are often backwards as well.

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Above is a drawing of her dad teaching her to ride her bike. The names are Daddy, Ezra, Sedona, and Mommy. Not all spelled correctly, but clearly written starting on the right. Writing her family’s names is one of her favorite things to do and it always looks something like this.

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Of course I freaked out a little bit when I saw this repeatedly because she has been a detail oriented perfectionists since she was two. I could tell story after story of how visual and focused she is. I think some of it comes from her delayed access to sound. So I knew it must be something that was a mix up going on inside her mind and not just her being silly or sloppy.

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It sounds like I am the perfectionist, but I am not! Not at all. Thanks to her speech delay I have never expected her to be able to write at age four. I was just worried because I hated the idea of her as a special needs child to have another hurdle to face.

I do realize dyslexia is more than just backwards letters, but at the same time I didn’t like how consistent she was with this mirrored writing. All kids mix up letters and left and right from time to time, but this was so thorough!

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The above is her copy of the “EAT MOR CHIKIN” sign from Chic-fil-A. So in this case she was looking directly at the message she was copying. The words below were completely from memory and those are some of her sight words. I, am, the, little.

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Here is the beginning of the alphabet (she did this in the car recently)

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And here is the same image MIRRORED. There are a few backwards letters like J, N, and P, but she’s still learning. I think if she knew the “right” way to write them then she probably would have written all of them backwards!

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I could give other examples about reading or journaling from back to front, but I have been asking about this for years and the experts didn’t seem concerned. She goes to a special private school where they give frequent assessments and go through everything with a fine tooth comb. They told me not to worry. When she is at school with the lined paper and direct instruction she seems to be doing everything the correct way from left to right. Most importantly she really enjoys reading and writing. And she absolutely loves homework!

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Still, at the last parent teacher conference I brought it up AGAIN and they looked through some samples I brought and explained why the order and precision of her work does not show signs of dyslexia at all. Not that I think dyslexia is the worst thing in the world. Like I said though, she has enough extra obstacles due to her hearing loss without adding any other disabilities.

The more people I talk to and the more I research online it looks like her mirrored writing can probably be attributed to her being left handed. Just one of the many resources I have found to support this is from the Better Health Channel and it says

  • Left-handed children learning to write often write back to front (‘mirror’ writing). This is a natural inclination, not a sign of dyslexia, and will resolve given time, practice and encouragement.

She just has to be the minority in every aspect doesn’t she? That little stinker! I am just joking. I am serious though about being grateful that this whole mystery is pretty much solved.

Have you seen or known any mirror writers? This was a first for me.

By | October 16th, 2015|Schooling, Special Needs|8 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.

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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!!!

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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.

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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.

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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!

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

By | October 14th, 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.

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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.

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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.

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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 | August 31st, 2015|Motherhood, My Life, 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.

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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.

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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.

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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.


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By | August 17th, 2015|Special Needs|6 Comments