Special Needs

10 Years Later

Yesterday was the ten year anniversary of when SJ was diagnosed with profound hearing loss.

I wrote about that day in 2012 in a post called “Processing the Diagnosis”

Then in 2015 I wrote a post called Living in Holland (thought from a special needs mom) and if you have a special needs child you are probably familiar with the Welcome to Holland poem.

In that blog post from three years into our hearing loss journey I posted this graphic and said “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.”

Then four years later in 2019 I shared how I almost missed the anniversary of her diagnosis. This was a time of year that was always a major trigger for me so the fact that I didn’t even think about it was a big deal. I was processing that reality and described how it felt like a new chapter and that maybe we had reached the new normal.

Now here we are another three years have passed by and we’ve had a lot of significant breakthroughs recently.

SJ told us she wanted to be baptized.

She accompanied me in a sign language video we posted on YouTube and people we would never be able to reach in person watch it everyday.

It’s not at all viral, but I know from my YouTubeanalytics that there are new views from people in other countries every day and to think about that kind of impact is really cool! A friend of mine saw the Gratitude video and invited SJ to be a part of a ballet performance incorporating sign language and worship. She will perform at two locations this week! It’s so awesome. I can’t wait to share more about that.

SJ also graduated from speech and language therapy and is no longer on an IEP. This is huge!

Then in a couple of weeks she will be on an alumni panel from her deaf school to answer questions from parents and students who are about to transition into public school. The privilege of watching the Lord move in her life and use her story to touch so many is priceless.

Today I was listening to a podcast. Full disclosure, it was a true crime story. I am one of those weirdos that listens to select true crime podcasts. Anyway, they were talking about how this heinous crime split time for this small community into two parts, before the tragedy and after. I immediately thought of how I used to think of SJ’s diagnosis that way. I heard another mom whose child is blind describe it that way. There was life before diagnoses and after. It’s two different worlds.

Except I don’t see it that way now. I see SJ as our little girl who is courageous, talented, beautiful, thoughtful, and deaf. I also see her as an equal part of our whole family. If I were to describe my life as two parts it would have to be life before kids and life after. That feels like two different worlds to me, but to think of SJ without hearing loss now is an incomplete puzzle or a warped photograph.

I feel like it’s been important for me to write about this entire process the past ten years. It helps me, but I really hope that it’s helpful to others. I forget the rawness that I felt in those early days of this journey and when I have it in writing it gives me empathy. Maybe someone will stumble upon this blog post who just had their world split in two, before diagnosis and after. Maybe this blog post from a mom ten years down the road will give them hope.

By Natalie|2022-05-02T12:16:55+00:00April 30, 2022|Special Needs, Uncategorized|0 Comments

Tips for Helping Your Child to Read

As a mom, one of the hardest things to face is the fact that your child may not be progressing as quickly as they should. If your child is not reading at the correct grade level and you are a bit worried you don’t have to panic.

You can teach your child to read and do it successfully. However, you must be prepared to learn as much as you can about the reading process.

There are varying opinions about what works and what doesn’t. There are also opinions about what age children should be able to read.

If all this difference in opinion has you wondering, “When do kids learn how to read?” find out the answer to this question and discover some of the best reading strategies that you can use to help your child.

Use Nursery Rhymes

A nursery rhyme will capture your child’s attention. Children will hear rhymes and syllables in the words they are reading. This will help to build their phonemic awareness skills.

Phonemic awareness is the skill that allows your child to identify and manipulate the individual sounds that are found in the spoken word. You and your child should clap to the rhythm of the rhymes together.

While your child is having fun they will be setting the stage for developing solid reading skills in the future. Nursery rhymes are a great way for children with speech problems to learn how to pronounce words.

Make Word Cards

You can buy word cards but it is so much fun to make them. Begin with three-letter words and ask your child to choose cards and then call the word. Ask your child to identify each of the sounds they hear in the three-letter words.

Examples of good words to use are cat, cup, and pig. Try to choose three-letter words that lend themselves well to pictures since this will make it easy for your child to remember the word.

Creating cards takes very little time and they are a great way to build your child’s decoding skills. If your child is starting to learn the alphabet then this is a great activity to use to introduce them to the sounds each letter makes.

Make Your Home Print Rich

You should make it a practice to label everything in your home. In this way, your child will learn that everything has a name. This helps your child to connect words to concrete things and this makes it easier for them to learn.

When you are out with your child, make a conscious effort to point out printed words in the environment. A good place to start is by drawing their attention to signs that you see.

You can sound out the letters for them that make these words. You can begin by focusing on the sound of the first letter in the words you see. Ask your child to tell you the sound of the first letter and what word rhymes with the word you pointed out on the sign.

You can also begin using the word in a sentence right away and let your child repeat these sentences. This is the best way to subtly help your child understand the meaning of a word.

Children Love Games

Children like to play and word games are the perfect way to capture their attention and keep it. These games should help your child to identify and manipulate all the sounds they hear in a word.

Another great way to get your child interested in learning new words is to write and use sand or wool to outline them. Let your child close their eyes and use their sense of touch to guess the word they are feeling.

Let them tell you the sound of each letter they have identified in the word.

Know the 5 Skills

For your child to read and comprehend what they have read, there are five skills they need to develop. Once you know what they are then you should do all you can to research them and find learning materials that will help to develop each skill.

The skills that your child must master are the following:

Phonemic Awareness
Phonics
Vocabulary
Reading Comprehension
Fluency

The first hurdle you need to cross is phonemic awareness. Next, you need to develop your child’s skills in phonics. When your child begins to understand the connection between letters and the sounds they make then they are well on their way to developing their vocabulary.

Comprehension is probably the hardest skill for many children to develop. This is why as soon as you can you should have your child use the words they have learned in sentences this will ensure that they have a solid idea of the words they are reading.

Fluency will develop when all the other skills are developed. Fluency happens when your child is confident in identifying words. This brings speed and accuracy.

Use Technology

One of the easiest ways to grab a child’s attention is to use videos. With so many videos available on the internet that teach phonics and developing reading skills, it is up to you to choose the one that is right for your child.

Pay attention to your child’s expressions as they learn from the videos. Ask them questions afterward to see what they have grasped.

Once you find a style of video that works then you can use it often to make your child develop reading skills.

There are also software, apps, and learning academies online that will help you to teach your child. The wonderful thing about the internet is the amount of information it provides. You don’t have to go it alone.

Model Good Reading Habits

If you are that parent who doesn’t like to read then it is time to change all of that. It’s good for your child to see you reading since this will help them to develop their interest in reading. Aside from this perhaps the best reading strategy you can use is to read to your child daily.

Read a variety of books to your child. This approach will help you to introduce a lot of different stories. Make sure you read books about things your child is interested in since this will make it easier for your child to relate to what is being read.

The next thing you should do is buy read along books. Those that have picture clues are the best ones and make it less likely that your child will fail at recognizing a word. This will help them to develop confidence.

Help your child to select books that they are likely to succeed with. The five-finger test is an excellent way to know if a book is too hard for a child. To do this test open the book to the middle.

Ask your child to begin reading the page. Every time they see a word they don’t recognize they should raise a finger. If by the end of the page five fingers are up then the book is too hard for them.

Time to Read

Now that you know some of the main things you should be focusing on it will be a lot easier for you to get your child to read.

Once you notice your child’s strengths work to develop them even more. The same is true for any weaknesses that you notice. Be consistent and patient because every child develops reading skills at a different pace.

By Natalie|2021-01-04T08:43:06+00:00January 4, 2021|Education, Motherhood, Parenting Tips, Schooling, Special Needs|0 Comments

Meet Isabella

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.

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.

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.

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.

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.

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.

By Natalie|2023-06-12T06:20:00+00:00March 6, 2017|Hearing Aids, Hearing Loss, Special Needs|1 Comment

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.

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

or sleep with a pic of her sleeping.

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.

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

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

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

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.

Early Reading and Abstract concepts

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.

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.”

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.

By Natalie|2023-06-12T06:33:06+00:00March 21, 2016|Babies & Toddlers, Creativity, Hearing Loss, Schooling, Special Needs, Speech Therapy|1 Comment

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.

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.

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.

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.

By Natalie|2016-01-30T22:10:14+00:00January 30, 2016|Special Needs, Uncategorized|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.

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.

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.

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.

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!

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.

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

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!

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!

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 Natalie|2015-10-16T14:35:00+00:00October 16, 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.

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

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

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

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

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

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

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

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

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

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

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.”

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.

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

By Natalie|2015-09-17T14:06:36+00:00September 17, 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.

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.

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!

By Natalie|2015-09-01T14:28:18+00:00September 1, 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.

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

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

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

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

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

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