Meet Isabella

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For SJ’s birthday this year I thought it would be really special if she got an American Girl doll and and then we could take the doll to the American Girl Doll Hospital for hearing aids. The problem is I knew we couldn’t afford an American Girl doll right now. Normally I would just buy second hand, but even then I couldn’t find one anywhere near my price range. You can hardly touch them for under $75.

So I had this wild idea to post an ISO on some yard sale sites on Facebook.

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And the response was INCREDIBLE. Strangers were sharing my post and contacting friends and offering dolls left and right. I could hardly keep up with the outpouring of generosity!  I had one lady send me a private message saying that she was deaf in one ear and really wanted to give a doll to my daughter. She said that she would let me choose one from the three that she owns STILL IN THE BOX! I tried to refuse her offer telling her it was too generous. How could I accept such a personal and valuable gift from someone I don’t even know? She told me it was what she wanted to do and the doll needed to be played with. In almost no time at all I met up with her and gave her a huge hug while expressing my deepest gratitude.

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Then the doll waited  and waited quietly in my closet until the big day final came. The gift bag was so big we had to move it from the table to the floor so that our little birthday girl could reach inside. As SJ pulled out the doll she instantly fell in love with her new friend.

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I explained how her name is Isabelle and that she is going to get hearing aids. SJ calls her Isabella because she told me there is a girl named Isabella at her school who has cochlear implants.

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It’s only day three of having Isabella and SJ has hardly let her leave her side. Sometimes I mistakenly call her a doll and SJ will correct me saying “She is not a baby. She is not a doll. She is Isabella.”

It’s been really sweet to watch and later this week SJ and Isabella will take a trip with Mémé (my mom) to go to the American Girl Doll store at The Mall of America.

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The original idea of having hearing aids put in on the spot fizzled out when I learned that it doesn’t work that way. You have to ship the doll to the AG hospital which is not located in the store and then they will ship her back. That’s okay though, we still plan to do that and the outcome will be the same.

On top of all that I am wanting to start a non-profit for special needs girls that have hearing aids, or a wheel chair, arm crutches, a service dog etc. to be able to get a doll that they can relate to. All of these disability accessories that I have mentioned are offered through American Girl. Just think of all the dolls that need a new loving home that could be donated to girls that would otherwise never be able to have a doll that shared their uniqueness.

There is still so much that would have to happen to set up a doll sharing program for special needs girls, but I just can’t shake the idea so I do believe that it is something the Lord placed in my lap.

I want to give a special thanks to the two women that donated dolls already and for the many others that were willing to. These days “feel good stories” are hard to come by in this divisive political climate, but I am encouraged to know that there are still so many people out there whose hearts are overflowing with kindness. This whole experience has been such a blessing and I am encouraged to never stop paying it forward.

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By | March 6th, 2017|Hearing Loss, Special Needs|8 Comments

My Personal Hearing Loss Story

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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.

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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.

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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.

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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.

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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.

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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 | July 1st, 2016|Hearing Loss|3 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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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

Free Signing Time Video

I have great news for you all today! Signing Time has a released a  FREE Back to School Video Download. It’s hard to believe that one of the stars of the show (little Leah) is now going off to college in real life! She was 4 when they started the series and so this free download is in celebration of that wonderful milestone.

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This video is perfect timing to prepare your little one for school while teaching 30+ signs as a bonus. I want to do everything I can to spread the word because I love Signing Time so much and if this video reaches 500,000 new families by October 1st then they will realease a second FREE download.

Downloads are great because sometimes you need that a quick movie available on your phone or tablet when you don’t have wifi access (like on an an airplane). Some of you moms of littles know what I’m talking about!

Just to give a short personal background story, the Signing Time series has been very instrumental to my family and will always hold a special place in my heart. Not only have they helped all three of my children to learn some of the foundations of ASL, but there was a season where I watched the videos over and over, pausing and rewinding parts until they stuck when SJ was first diagnosed deaf. My husband, my parents, and I would all gather around for our Signing Time lessons and we are adults! That was a big part of how I was able to final speak with my baby girl for the first time.

I won’t go into all the details but SJ wasn’t diagnosed until she was 2 and she didn’t get hearing aids until she was 2 1/2 and even then they didn’t help. It was a year before she began to hear via use of cochlear implants! So the first three years of her life sign language was how we communicated.

If you are interested in your child being exposed to sign language for any reason at all (and there are many benefits by the way) then this is a great time to check out Signing Time because the video download is absolutely free. There is no obligation to buy anything and it’s really fast and easy to get on your computer or other electronic device instantly.

Our family owns several Signing Time videos, we also have checked them out from the Library for ones we don’t own. We’ve seen Rachel and the gang on Nickelodeon and PBS as well as Netflix, but coinsidentally the school episode is one that is NOT on Netflix and we don’t own it. SCORE!

If I had to give one critique (it’s not really a critique at all, it’s just a personal difference). We use all the signs from Signing Time except for some of the finger spelling ones. For example there is a video where they teach the sign for “Toy” and they finger spell it “T-O-Y”. I own a signing dictionary and have local deaf friends that sign it the same as “play” but with the letter “T”. That doesn’t mean that finger spelling it is wrong AT ALL, I’m sure it’s more accurate to some degree. ASL is complex in that there are many different regional dialects and acceptable variations.

For SJ we used sign language as a practical bridge for communication and she still is not at a place where any fingerspelling has worked for her. So we are more likely to use what is called a “home sign” before we would learn a bunch of fingerspelling words. From what I understand this is not uncommon for young deaf children the same way hearing children have variations of words that they use before they are able to articulate. I mention all of this because the “Back to School Video” finger spells “Glue” and “Pen’.

Sorry, I’m rambling now, but I really do believe in this program and I’m thrilled to share this awesome deal with all of you. Again, the full length video is “Signing Time Back to School” and you can watch it instantly and download it to keep as your own. Just go to

www.signingtime.com/free-video

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Oh, and don’t forget to share this special offer with all of your friends.

 

 

 

 

2 Years of Speech

 SJ said her first word just barely over two years ago, when she was three years old. She said “up” and pointed to go upstairs. I freaked out. Just a little bit.

From then on I started documenting everything. Okay, maybe not every word she said, but I have notes on my phone that I use to keep track. The name of the list on my phone from that time was “Words SJ Said Without Prompting”

What that means is that she said them spontaneously without anyone coaxing her and cuing her to say a specific word. She was able to parrot a lot of words, but she didn’t necessarily know them. Things really took off in the fall of that year.

The next year, in 2014 she started putting words together

This time last year she said “Mom. I hear phone!” and it was a huge breakthrough.

The words just kept rolling in and she was beginning to really communicate her needs.

Over the summer she was saying sentences and I started a new list called to “Sentences SJ Said”

or “Stuff SJ said at Christmas time”

So she progressed from sounds, to words, to spontaneous language, to multiple words, then sentences and lastly conversations.

That is where we are now. Good grief, I am crying just typing this out. Sometimes it feels like we aren’t getting anywhere, but as I look back I can see how far she’s come.

I used to get really excited when I noticed her say a new word. Now she has so many words I can’t keep track. Instead I find it cute when she doesn’t know a word and I get to teach her one. Like recently when she asked the word for feather or honey. Or yesterday when she called the refrigerator a closet.

It’s so hard to get video of anything. She’ll be chatting up a storm, but the times I actually sit down to record something she is a vault. I do have some snippets of a 15 minute conversation I had with her while she was preparing a snack. Please excuse her wild end of the day hair and the disaster in the background. I don’t call this space messy mom for nothing.

She has a LONG way to go before she is caught up. I’m proud of how far she has come though and I have to focus on that and remember my favorite Bible verse Jeremiah 29:11 to keep things in perspective.

I am going to paraphrase a little here, but you’ll understand why.

For I know the plans I have for SJ declares the Lord, plans to prosper her and not harm her, plans to give her hope and a future.

By | March 23rd, 2015|Hearing Loss, Uncategorized|11 Comments

Meeting a Project Runway Fashion Designer

A couple years ago my best friend called me to let me know that there was a deaf designer on Project Runway that signed and had a cochlear implant. I had never watched the show before that or since then, but I religiously followed that entire season rooting for Justin LeBlanc the entire time. At one point he was actually eliminated and it was very emotional. I might have okay, I did shed a tear, but then he was able to get back on the show because you know how those reality shows can go.

 I was thrilled to see a role model on a popular TV show that was deaf like my daughter and I even blogged about how I was a big fan. So when I found out that Justin LeBlanc was coming to my SJ’s school I was ecstatic! I had the opportunity to photograph the event for the school. After LeBlanc was introduced to the kids (grades K-2) they had a Q&A which mostly included 

Can you make shirts?
Can you make a hat?
Can you make shoes? 
Did you make your clothes?
Did you make my clothes? 
Can you make toys?
And lastly, How old are you?

 The answer is yes he can make just about any clothing item, but no he did not make the clothes anyone there was wearing, and he is 28 years old.

 Afterwards LeBlanc helped all them decorate their own hat. It really was the coolest thing! It was like watching the mini version of Project Runway with all of them busily losing themselves in the fabric and materials.


Then came the fashion show! 

 All of the elementary age students walked down the runway in front of their classmates and other special guests. It was adorable to say the least. 

At the end LeBlanc shared a little bit more about his hearing loss and what his passions are.  I was able to get a picture and talk to him briefly when everything ended. In classic fan girl fashion I started sputtering out “It is SO great to meet you. I never even watched Project Runway until you were on it” and his response was “Yeah, me neither.” I have had a lot of PR fans ask about what he was like in real life, not that I hung out with him for a week or anything, but for that afternoon he was so polite, sincere, and always had this smile on his face.

His parents were there too. Whenever there is a deaf celebrity I am always most interested in the parents behind the scenes, because that’s what I relate to and I loved getting to visit with them. 

 I’m sure everyone there took away different things from the experience, but the highlights for me were hearing LeBlanc talk about how Project Runway was kind of like a designer summer camp for him because he had six weeks being completely unplugged. No cell phone. No social networking. No TV. Just hours upon hours spent working on clothes and really getting to focus on his craft, which he had never had that opportunity to do to that extent before. 

On top of all that channel 12 in Cincinnati was there. 

Much to my surprise they decided to interview me (I am the only woman in the video. It’s about the halfway point and they also show a short clip of SJ while I am talking). I’ll admit it was a little bit intimidating and definitely made me self-conscious, it was still a great experience though. The cameraman and anchorwoman were so personable and down-to-earth. You can view the video on their website. 

 Local 12 WKRC-TV Cincinnati – Top Stories

I really can’t say enough good things about the fashion show at Ohio Valley Voices and I do want to give credit to Justin Leblanc designs, Sewn Studios, and TJ Maxx for donating their time and materials. I know that it means so much to these kids and their families.

 I meant what I said in my interview

“It’s really inspiring to have someone that’s deaf that’s shown how successful you can be despite whatever challenges you may face. I think they had a great time”

By | March 10th, 2015|Hearing Loss, My Life, Special Needs, Uncategorized|15 Comments

My Favorite Gift (SJ’s Christmas Message)

One of my all time favorite Messy Mom blog posts is The Littlest Christmas Star which I wrote this time last year . If you haven’t read it I would encourage you to check it out.  It’s about SJ’s first Christmas program at her deaf school. Her line last year was to say I love you mommy, daddy, and her brother’s names. She could barely muster out I love you mama. It wasn’t much, but it meant a great deal to me because she tried. She’s come a long way since then. I had heard her practicing saying her lines at home. “I love you mommy, daddy, Zion, Ezra” Sometimes she would even talk about whose turn it was and also recite her classmates lines.

When the day of the Christmas program arrived we headed to the school and I heard her practicing in the backseat, but I also heard her say “I want Minnie Mouse”. I could tell it was part of what she would be saying in the program and not just random chatter because children tend to sound like zombies when they recite lines (to quote Gru from Despicable me 2). I almost cried before it even started because in that moment I realized she was going to say more than just I love you to us! It might not sound like much, but this meant she was able to memorize more, speak a lot more, and most importantly it meant that she has made advancements since last year that her teachers deemed ready to take to the next level! 
Sure enough SJ approaches the microphone and it’s not intelligible to everyone, I get that. To me as her mom though, I understood every. single. word. And for the first time I got to hear her say
“Santa I want a Minnie Mouse for Christmas. I love you mommy, daddy, Zion, and Ezra.” 
She nailed it. All the mothers in the auditorium that know us and know how far SJ has come all looked back at me to see tears flowing down my cheeks. I tried not to cry, which is worse, because that just equates to an ugly contorted face, but whatevs. Some of them were crying too because it was such a beautiful moment. 
For the record she DID get a Minnie Mouse for Christmas.
 Ezie got Mickey too so they love to play together with them. He actually calls him Minnie because he hears that from his sister so often. I don’t know if Mickey’s name has ever been uttered in our household.
The mouse presents continued when we went to Texas and she got a Minnie Mouse outfit 
and a Minnie Mouse Puzzle. 
All of which she has announced to many people. She says “I have Minnie Mouse toy. I have Minnie Mouse coat… pants… puzzle. I have four Minnie Mouse.” 
So that may have been her favorite gift of the year, but mine was just hearing her be able to ask for it. It is a wonderful life. 
By | January 7th, 2015|Hearing Loss, My Life|8 Comments

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 | November 19th, 2014|Hearing Loss, My Life|4 Comments