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

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|3 Comments

Hanging My Hat

I took this week off from blogging. Not because I didn’t feel like writing (because I really have). I just needed to focus on Elle this week. We had 4 different appointments so it’s been intense.

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After waiting a month for these evaluations, and really hoping for some concrete answers, we walked away with more questions. It wasn’t bad news. It was just conflicting. I feel like my hands are tied right now and I have prayed Lord is this just a season of waiting? Is there anything I can do to help my daughter? and I felt in my heart the word that was given to me at the beginning of the year. Next. And I was reminded to do the next right thing.

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So I called our current audiologist and asked if I could just come meet her in person and she graciously agreed. She allowed me to stop by right then! How amazing is that? We sat down and talked. She answered my questions. We came up with a plan. I needed a plan guys. I am a planner. I was willing to not have one if it was the right thing, but this was an answer to prayer for me.

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The plan right now is to hold off on hearing aids. With her head still being wobbly and her still sleeping so much, the hearing aid would be more of a nuisance than it would be beneficial. Once she is upright and on the move then we will do a hearing aid in the left ear.

Granted all of this could change. There is so much up in the air right now. I feel like my entire head is up in the air. My mom likes to use the idiom “where do you hang your hat?” and that is it. I needed to hang my hat on something! Another month of waiting for the next ENT visit, ABR, or genetic testing results would just make me go crazy. I can’t hold onto this hat. I need to hang it and so for now I know that is no hearing aids, I will continue with early intervention therapy, and continue monitoring for fluid and hearing tests. Even if it changes, I’m going to be okay, but for now that’s the plan . That’s the next right thing.

Thank you for all of the prayers. I know that they have made an impact.

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By | January 30th, 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

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

Our Pretty Little Girls

This was my status update last night on Facebook.

“Today Sedona found a penny and two nickels. Tonight when she prayed she said “Dear Jesus, thank you me find three dollars so I can go shopping in Jesus name.”

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Now for a little bit of background to this story that will make sense to those that follow my blog.

Here is an excerpt from something I wrote a few weeks ago

“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.”

The good news is since writing that I realized I needed to be more intentional about this special time of prayer with the kids. It’s kind of embarrassing. It’s not that I have never prayed aloud with SJ in 5 1/2 years. She knows what prayer is. But between bath time, pajama time, and her own exhaustion the cochlear implants are always off before we do bedtime prayers and because she just now has started really talking I never thought about having her pray out loud other than a “repeat after me” type prayer. Anyway, all that to say as we are going through our evening routine and wrapping up story time we do prayer time before she shuts down her hearing for the night.

Even though I know she doesn’t quite understand yet, she has had some fun little prayers such as “God is great, God is good. Merry Christmas. The end.” I know that each word blesses the Fathers heart and it makes me so happy too.

I just wanted to share that breakthrough and document how one of her very first prayer was about shopping (in Jesus name). So cute. Raising girls is truly a different ballgame than boys.

Today I have the opportunity to write about our story and share some encouragement that I have learned through SJ’s journey.

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The guest post is featured on Our Pretty Little Girls and I would love it if you stopped by and said hello.

 

By | September 17th, 2015|Family, Special Needs|2 Comments

Keep Your Kids Inside When Mowing the Lawn

Yesterday I mentioned Jude in my post about having a special needs child.

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While Jude has always been special, adorable, and loads of fun he wasn’t born with any disabilities or particular medical issues. However, just over a year ago he lost part of his legs due to a tragic lawn mower accident. I will never forget the day I got the message from my friend Jen last summer. J and I have been friends with this couple for almost 10 years now. Jen even contributed to the Messy Mom blog during my Lots of Hope in a Little Home series by allowing us to peak into her house and catch a glimpse of some of the brilliant strategies she uses to homeschool in a small space.

 

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This was one of the photos posted on my blog. That’s Jude on the far left. Now they have FIVE kids.

 

As I said yesterday, there are so many ways that I can relate to their story. I learned that SJ was deaf just after I had discovered that I was pregnant. When her surgery was scheduled I wasn’t sure if I was going to go into labor! Luckily, Ezie came early. Weeks later SJ got her first cochlear implant. The hospital gave us a little wagon for Ezie to sleep in so that he could stay with us in the hospital room after her surgery.

When Jude had to have his surgery very soon after the incident Jen was VERY pregnant. She even had to switch the hospital that she had originally planned to give birth at so that she could be at the same hospital as Jude. Their story really is a miraculous one. I won’t go into details because she has graciously agreed to do a guest post sometime which would be awesome! This whole family just radiates the love of Christ and their story has impacted so many already!

In fact they traveled across the country not that long ago to be a part of a campaign called Limbs Matter which raises awareness about lawn mower safety.

First of all, the local news station did a really great story last year with a follow up this year and I definitely encourage you to watch the clip.

Also, here is a video from the public service announcement they were a part of. It explains what Limbs Matter is all about.

The message is clear and simple “Keep your kids inside when mowing the lawn”. These kinds of irreversible incidents happen on a DAILY basis. I love Greg’s (Jude’s dad) message that he shared along with this video on Facebook

“Here it is.. Please share this friends! Had you asked me the day before our accident if I would ever back up over one of my children with the mower I might’ve chuckled at you and said, “Of course not I’m safe!” Well here we are with a double amputee. It can and does happen. I’m not a fear monger but I do hope to get the stats of these accidents going in the opposite direction.”

By the way Greg is the one with glasses at the end and you can probably recognize Jude from the shoes.

Greg is totally right. They are not fear driven people. They are also really responsible and cautious. Knowing this family on a close personal level I can say that it could happen to anyone. Accidents can and will happen, but as these families have conveyed if they help one child or one family not to go through this then it’s totally worth it. So spread the word about Limbs Matter. Share the videos and go like their Facebook page.

I am so proud of Greg, Jen, Jude and their whole beautiful family. Jude is such a fighter. He really does NOT quit and he is so strong and active. I can’t wait to see what he accomplishes next!

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By | September 1st, 2015|Parenting Tips, Special Needs|2 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