What Would Nathan Say? – Meet Kelly

by Kelly, Contributing Writer

Our beginning has been nothing short of rough. I was induced with Nathan one week after he was due. He appeared to be a healthy 7.12 pound baby. Unlike most other babies born with Cerebral Palsy, he wasn’t premature nor did he require any oxygen after birth.

Within an hour of being born, my gut told me something was wrong with Nathan. He would latch while nursing, but within seconds he would pull off and scream. After nursing my first two kids, I knew what I was doing and just felt something wasn’t right. This cycle continued for over 12 hours. I repeatedly told the nurses, he won’t stop crying there must be something wrong.

A year later, after I requested all of his hospital records, I would learn that those nurses were making notes in my chart that I was making no attempt to comfort him. I sure would love to give those nurses a piece of my mind. Had they really listened to me instead of making judgments, Nathan might not have suffered so much in his first year of life. After exactly 24 hours in the hospital, I asked to please leave as I felt there was nobody there helping me anyway.

Those first weeks were harsh and scary. The nursing problems continued. Nathan developed what the doctor called breastfeeding jaundice. He was so yellow; I have a hard time looking at the pictures of him like that. After several appointments and telling the pediatrician my concerns, he said Nathan was failing to thrive.

We took him in for weekly weight checks until he started to put on more weight. Nathan spent most of his days crying for hours. I was told by the doctor it was colic. His exact words were, “once he is 3 months old he will be perfect”. Again, the words I’d like to tell him now are very colorful!

After 3 months of doing everything possible to get Nathan to nurse, I quit. This broke my heart, as I knew how much he needed it. He took to the bottle much easier than he did nursing. We thought our problems were behind us, they weren’t.

Nathan developed extreme reflux. At about six months old, I decided to start him on solid foods. There seemed to be something off when I would feed him. Every time I put the spoon in his mouth he would also shove his hands in his mouth. While this is somewhat typical, he did it excessively. It was more than what was considered normal. So finally at 8 months old, Nathan started Occupational Therapy for feeding.

Everyone from friends, family, and doctors were telling me he will be fine. I honestly felt deep down inside, there was really something wrong. Hearing everyone’s reassurance just made me feel like I was crazy.

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While Nathan did sit up at the right age, he wasnt hitting any other major milestones. At 10 months old, he started physical therapy in addition to occupational therapy for issues outside of feeding. By the time Nathan was 1 year-old, he wasn’t crawling or walking. To me that justified, there was in fact something seriously wrong.

Nathan never really babbled, nor did he ever put things in his mouth as all babies do. Still, everyone in my life said he was just a “late bloomer” and he’ll catch up. As months passed, he didn’t. In addition, his head size began to fall off the charts. Head size says a lot about a child. Too big or too small is sometimes a red flag for concern.

In March of 2012, Nathan was sedated and given an MRI. Weeks later, his neurologist told me over the phone, that Nathan had a slightly enlarged right ventricle and decreased white matter. He then proceeded to tell me that this would fall under the umbrella term of Cerebral Palsy. Anytime there is an abnormality of the brain it can be classified as such.

There it was, the explanation I thought all this time had existed. As I researched the Internet for Cerebral Palsy I came to the realization that Nathan wasn’t the typical CP case. By this time he was already walking and his muscles didn’t seem to be that weak. To this day Nathan doesn’t appear to be a typical CP kid, as he has never been impacted by a muscle related issue. So I guess that’s one win. I did gladly accept the diagnosis, as this new label opened the door for him to receive more services.

After a year of weekly therapies, it was clear Nathan wasn’t making any improvement in speech. During a recheck with his feeding therapist, she mentioned Apraxia and asked me if anyone had ever mentioned that. Back to the researching I went. When I read the description of Childhood Apraxia of Speech, I knew this was what Nathan had.

The couple words that Nathan had, he would lose for months at time. That symptom of losing words really stuck out to me. The writing was on the wall; it wasn’t the Cerebral Palsy stopping him from talking, it was the Apraxia.

I went on to find the most trained and seasoned SLP for Apraxia, that was somewhat close to our area. We’ve been seeing her four times a week for two years now. Nathan is one of the most severe cases she has ever treated.

Even with years of treatment, Nathan still can’t talk. As he has hit the age of 5, the chance of him ever having speech as his primary form of communication is quickly dwindling. Every day is battle. Im sharing Nathan’s story because I want to let parents of other little warriors know that they aren’t alone. Not everyone’s fight can be won but we won’t give up trying.

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Winner of the Speech-EZ Giveaway!

Thank you to everyone who entered the Speech-EZ Giveaway, and took the time to get informed about the new Apraxia Picture Sound Cards app.

I was so excited to hold my first Giveaway on my blog, but I had no idea how hard it would be! After reading all of the comments, and hearing the brief descriptions of Apraxia kids around the Country, I wanted everyone to win! I hope at the very least, my readers feel informed about the app, and the Speech-EZ Apraxia program. Please feel free to contact me with any questions or concerns you have about the Apraxia Picture Sound Cards app. I’m here to help! sheilatufano@gmail.com

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Congratulations to…
Steve Greer!

Steve lives in New York, and is the father of a 7 year-old boy with Apraxia. Congratulations Steve, I hope you AND your SLP love the new Speech-EZ app! I know you will!

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If you’re curious about how the lucky winner was randomly chosen, I’d love to share the fun and easy website that I used. I toyed over using anything from Rafflecopter, to the good old-fashioned, names in a hat. I landed on a website called classtools.net, and it drew me in with it’s colorful wheel that is reminiscent of the classic show, Wheel Of Fortune. I manually put in all of the names, and in the exact order I received the entries. Maybe someday I’ll get fancy enough for Rafflecopter, but this was fun! Click on the link below to see the actual wheel with the winning name :).

http://www.classtools.net/random-name-picker/35_TjR32E

If you didn’t win, don’t be too discouraged! Speech-EZ is having a HUGE 48hr SALE today, Friday, August 7th at 12:00pm Eastern Time on all SPEECH-EZ® apps! Click the links below to learn the details of all the Speech-EZ apps.
Apraxia Picture Sound Cards (Pro) from $299 to $89.99
Apraxia Picture Sound Cards (Parent) from $179.99 to $79.99
Hand Cue Sound Matching from $29.99 to $4.99
Sound Matching from $29.99 to $4.99
Syllable Counting from $29.99 to $4.99
Auditory Figure Ground from $29.99 to $4.99
Auditory Rhyming from $29.99 to $4.99
Target Sound Identification from $29.99 to $4.99

As you can see, Speech-EZ pretty much covers the gamete on building speech/language/communication, and all based off of the Speech-EZ method.

I am passionate about the Speech-EZ Apraxia program for one simple reason; it changed my daughter’s life. Just nine months ago, Gia was a shell of who she is today. It’s the only method we’ve used, so the only one I can give my informed and educated opinion on.

When I called FDH to make my daughters first evaluation appointment, I was pleasantly surprised to find out that they were located just 5 minutes up the street from my house. I thought, “Well that’s nice and convenient!”

Fast-forward to meeting and talking with dozens of Apraxia parents – Nice and convenient?! More like, won the lottery! I had NO idea how many families were struggling to find not only the proper treatment for their child, but find someone that had ever even seen a child with Apraxia. It’s CRAZY! I know families who have picked up and moved across the country to Arizona. I know families that drive an hour each way, 5 times a week. Gia and I were extremely fortunate, and these stories were a huge reality check for me! Every child should have the same access to treatment, but until that becomes a reality, I want to point them in the direction of the most helpful and useful resources; which brings me back to the Speech-EZ apps.

My personal advice to those considering purchasing a Speech-EZ app would be this:

1. These are SIGNIFICANT discounts! Take advantage! Yes…..they’re worth every penny!

2. You are DEFINITELY getting the most bang for your buck with the Apraxia Picture Sound Cards (Parent). This is the app that will cover all of the needs of children in the beginning and middle phases of recovery. The children coming down the final stretch (yay!) may not need everything included in this app, but could really benefit from one of the others.

3. Consider the phase of of Apraxia/Phonological Disorder recovery that your child is in. Your little fighter may have reached a point of having very few specific needs being targeted in their ultimate mastery of communication. Apps like Auditory Figure Ground, or Syllable Counting, may be exactly what your child needs.

4. Get the whole family involved! If you decide to purchase a Speech-EZ app, make it something that parents, siblings, and even grandparents can enjoy with your child. This will be fun for your child, and make everyone who loves them feel like they’re helping. You may be providing therapy, but it doesn’t have to feel like it!

I decided to get Gia’s brother, Nicholas involved in helping Gia. I attached two short videos of the two of them using the Picture Cards portion of the APSC app. That day we worked on some CVC words, with /p/ and /s/ sounds. So I taught Nicholas those two Hand Cues and told him to give it a whirl! It was awesome!

I had trouble for a long time with Nick’s jealousy of Gia, and his resentment of the ways her disorder had changed our lives. It breaks my heart that he was hurting, but he didn’t really know why. He was acting out quite a bit, and only recently has seemed to let go of his anger. I’m always trying to find ways to make him feel special. If you watch him closely at the end of each video, you’ll see the pride in his face.

What have you done to get the family involved? I’d love to hear your ideas and stories!

Speech-EZ Review and Giveaway

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This time last year, Gia was beginning her first year of priority preschool. We started that school year with a daughter who had a severe and unexplained speech delay. Just 3 months later, we had a daughter with Apraxia. It’s because of Gia’s priority preschool speech therapist, Shannon, that we are finally getting her the help she needs. Shannon couldn’t help Gia with her Apraxia, but she spotted the speech disorder, and I will forever be grateful for that.

Shannon referred us to a local facility called the Foundations Developmental House (FDH), who had one of the few Apraxia-specific programs in the state. She assured us that we were in good hands.

We left the meeting in shock, but hopeful. That same night, and for many nights to follow, I did what worried moms do best – I researched. What is Apraxia? How do we treat it? Is there hope for my daughter? Much to my relief, all of my answers lied at the Foundations Developmental House, and a nationally recognized Speech and Language Pathologist, named Lynn Carahly. Lynn is not only the owner and director of FDH, but she is the developer of the Speech-EZ® Apraxia Program.

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Lynn Carahaly, M.A., CCC-SLP

Gia was making little to no progress in traditional speech therapy. So what makes Lynn’s program different? The Speech-EZ® Apraxia Program simultaneously tackles both the neurological and motor issues that define Apraxia. Specific techniques are implemented in order to build the neurological pathways needed for proper motor planning, which is key to intelligible communication. It’s a step-by-step process of using multisensory strategies to teach the child the correct movement sequences for speech.

Shannon was right, we were in good hands, and in November of 2014, we were officially a part of the The Speech-EZ® Apraxia Program. One day at a time, the well-trained and highly-skilled therapists at FDH are making a difference in Gia’s life.

Follow-up at home is an essential part of your child’s success. It really does take a village! However, implementing practices at home is sometimes easier said than done. When I heard about the latest version of the Speech-EZ Apraxia Picture Sound Cards app (APSC), I knew it was exactly what Gia and I needed. I knew she would take my attempts at helping her more seriously if my follow-up was more consistent with her therapy sessions.

My review of the Apraxia Picture Sound Cards app

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Included features of the app:

•FULL Speech-EZ® manual with print capabilities
•Session Data visible to BOTH parent and SLP
•Ability to customize and save/edit card sets and share to Homework file for parent home practice
•Greatly improved, sophisticated data collection and analytics
•Goals for CAS, Phonological Processes and more can be hand selected and customized from goal bank, saved to child’s profile, and shared with parent
•Over 1000 stimulus cards
•Sort by Vowel feature
•Sort by CV and VC feature
•Voice recording and playback
•Improved sort and shuffle abilities
•More control in settings such as start with back of card for reading

My top 3 features of the app:

1. Therapist/parent sharing technology:

11731711_10153412491985365_8551217957767990245_oThis is my favorite thing about the updated version. If the SLP has the Pro version, and the parent has the Parent version, SLP and parent can communicate between devices. The SLP can create customized stimulus homework sets and “share” directly to the parent’s app. This is something I can’t wait to get started on! Working toward common goals with your child’s SLP is crucial. This gives you and your therapist the ability to communicate those goals in ways you would have never dreamed were possible.

2. Voice Recording:

11117968_10153412510785365_9215212706482903445_oI loved having the ability to record and playback my sessions with Gia. It’s a great reference tool, and the playback sounds perfectly clear. With so many goals in mind, there’s so many reasons to listen back on your session. I found it was most helpful to really listen for the sounds that Gia was struggling with. I could then use that information when preparing for our next session, and plan accordingly.

3. Sorting Sounds:

11741125_10153412495305365_2713987462298234876_oDepending on your child’s individualized goals, you can select the appropriate sound combinations that you’re working toward mastering with your SLP. This goes back to the importance of communication with your SLP, and the benefit of the new therapist/parent sharing technology. Every possible combination of sounds is featured in the app, so every child at every level is covered. You can completely customize your sessions to be exactly what your child needs – nothing more, nothing less.

My take on the app:

My experience with the app has been nothing short of positive! It’s a total original, and unlike any speech app out there. Children with Apraxia get the most benefit from daily therapy, but daily therapy is unrealistic for most families. This app gives us as parents the tools to provide therapy in between sessions, and in our very own home. How cool is that? I needed the structure and Gia needed the consistency, and the Speech-EZ app provides both. The work is done for you, and beyond that, it just takes your commitment. I would definitely recommend familiarizing yourself with the app before starting a session with your child. Like with anything, there’s an initial learning curve, but once you get in there and navigate through it a bit, you’ll find that it’s very user-friendly.

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My very first “What Would Gia Say?” GIVEAWAY starts today! From now until August 6th, you can register to win the latest version of the Speech-EZ Apraxia Picture Sound Cards App! Winner of the GIVEAWAY will receive the Parent app ($179 value) AND a Pro app ($299 value) for your SLP!

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TO REGISTER FOR THE GIVEAWAY:
♦ You’ll have to complete at least one of the actions listed below. Earn bonus entries, and increase your chances of winning, by completing more than one of the actions.
1.   Sign up to follow my blog at the top of the page.
2.   Leave a comment about your child with Apraxia.
3.   Click “Like” on my “What Would Gia Say?” Facebook page.
4.   Share the Giveaway, and let me know in your comment.
♦ Registration for the giveaway will close at 5:00pm Eastern Time on Thursday, August 6th. The winner will be randomly selected, and notified via email on August 7th. Good luck!

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Visit the Speech-EZ Facebook page to enter even more amazing GIVEAWAYS, and learn details of the big SALE to follow! Click here

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What did you say?

Gia is almost always the first one awake in the Tufano household. She is the ultimate morning person. Her light is so bright when the sun comes up, as if she slept away the frustrations of her everyday life. She wakes up forgetting her struggle for words, and her insatiable desire for sensory input. She’s the purest form of herself in those early hours; her mind is restored, her body is refreshed and her soul is renewed.

By 6:00am, Gia is ready to take on the day, and she’s taking me with her whether I like it or not. Every morning she sneaks quietly into our room, looking for early morning company. She’s like a tip-toeing bandit on a mission for mom. I wake up to her big blue eyes and single-dimple smile looking up at me, just itching for an invitation in to bed. So I scoot my sleepy butt over, she crawls under the covers, and so begins our very predictable morning routine.

I get about 10 minutes of cuddle time with Gia before the inevitable question arises, “Bekfast?”. Her stomach wakes up as early as she does. So with one eye open, I follow her lead to the kitchen. “Mom, how’s you seepy day?”, she says to me.  What Gia is of course trying to ask me is, “How did you sleep last night?”, but her brain has not yet been able to process and express the common phrase accurately. This is a perfect example of Gia finding a way to replace typical language, but still get the same point across. I don’t correct her, because it’s freaking adorable! She’ll correct herself in time, and until then, I’m enjoying these words for what they are.  This simple greeting is like a daily reminder of how far she’s come. I’ve actually thought a lot about that inevitable morning that Gia greets me with, “How did you sleep last night?”. It seems strange to say, but the thought of it makes me kind of sad. As much as I want her to talk like everyone else, I’ll miss this phase in her journey to normal speech.

When we reach the kitchen, Gia will typically make one of two standard requests, “cereal!” or “waffle!”. These are her go-to breakfast foods, and this is exactly how she asks for them. One word and straight to the point. This is another example of the phase of speech that Gia has reached. In many of her statements and requests, she’ll use a single word that makes her point, and makes it quickly. It’s the word that makes the most impact, and provides the highest likelihood of success. Success = being understood = happy girl! She has spent her 4 short years of life navigating through the English language, looking for her sweet spot, and she’s found it! This is an essential stepping stone to Apraxia recovery, and a big accomplishment for Gia. As nice as it’s been to have a less frustrated child, it can also make for a less motivated child. This phase of recovery has been the most difficult to break through thus far. We need to recharge Gia’s brain to welcome the next phase, and not fall back on what feels comfortable. This is a big focus in Gia’s therapy right now; extending her one word, to a simple, three-word sentence. like, “I need shoes”, or “I want ball”. She says these with ease on command, but has not been able to apply them to real life (classic Apraxia). Instead she’ll say, “shoes”, or “ball”, and I fill in the blanks.

On a recent early morning that was not unlike the rest, Gia chose “cereal!”. So I opened the pantry as she sat at the counter waiting. Before I could even reach for the box, I hear, “Mom, I want cereal!”. I turned to look at her, “What did you say?”. She starred at me. “What did you say, Gi Gi?”, I repeated. Now with a smile on her face, “I want cereal…pease.”.

What can I say? It was just one of the moments – a moment I will remember forever. We had been working toward this moment for months, and I was watching it break through. I just looked at her with tears in my eyes, and she smiled at me with pride; she knew! I took her over to the couch and squeezed hugs into her on the way. We sat together and talked all about her accomplishment. She said a lot of gibberish while I gave a lot of praise. There were kisses, hugs, tears and giggles. We celebrated in a way that only the two of us could really understand.

Gia will read my blog someday, and I keep that in mind every time I write. I don’t need her to know every detail of her rocky road to normal speech, I just need her to know that she fought for the life she has. I want her to see it for the rollercoaster that it was; from the slow upward climbs, to the sudden stomach-turning dips.

Just as we finished our victory celebration, we heard the predictable little footsteps and yawns of my son coming down the hallway. Gia jumped off the couch and ran to greet Nick…”Hi Nick! How’s you seepy day?”

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I’ll take one Apraxia handbook, please!

My husband would refer to me as a “recipe follower”. As odd as the description is, it sums me up pretty well. I follow recipes down to the 1/8 teaspoon of pepper. If my awesome cook of a mother saw a recipe that called for 1/8 teaspoon pepper, she would toss some pepper in her palm, and throw it in the bowl. When I see it however, I get out my nifty little 1/8 teaspoon for measuring, poor the pepper in and slide a knife across the top. Yep. That’s me. In a nutshell. Don’t get me started on recipes that call for a “dash” of something. What does that even mean? I’ll just “dash” my way back to the cookbook and find a recipe that isn’t speaking nonsense.

Every few months my husband will challenge me, “Ok babe, how about tonight you try cooking without any measuring cups…Ohhhh snap!”. He thinks he’s funny, so I’ve humored him back and tried it a couple times. Just the act of it made me uncomfortable, but it doesn’t stop there. When we are sitting down to eat our meal of unmeasured ingredients, I’ve already convinced myself that it’s ruined. What if I had followed the recipe? What would it taste like? What would it look like? After all, recipes are there for a reason, right? They are there to say, “Oh you want Chicken Parmigiana tonight? Well here’s EXACTLY how to get it. You’re welcome.” It’s a beautiful thing!

So there you have it, I am a “recipe follower”, that has a child with Apraxia. What does being a “recipe follower” have to do with Apraxia, you ask? Let me explain.

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As Gia was receiving her diagnosis I, like all Apraxia parents, wanted to know what was next. Tell me what to do and I’ll do it. Just lay it all out and I’m on board. Please just tell me how to fix this. You leave the therapists office with your plan of action, and a whole lot of hope. But wait, you forgot to give me my handbook! Oh that’s ok, I’ll just do a little research online, find my trusty little Apraxia handbook, it will tell me EXACTLY how to fix this, and voila! So I researched, and nothing. Researched again, still nothing. Not one Apraxia handbook, not one recipe for the perfect Apraxia stew, not one instructional guide to the fastest Apraxia resolve, and not one set of directions to an Apraxia-free life. Nothing. Doesn’t Apraxia know the value of a good old-fashioned, step-by-step recipe?!

So here I am 7 months later, and still no handbook. As anxiety-provoking as it was, I had no choice but to accept that I would never find my black and white answer to Apraxia, and I would be living in the gray for years to come. This was nothing that my measuring cups could fix. Every child’s Apraxia recipe is different, and I had to depend on a team of people to help me create Gia’s. The reality is, the recipe changes – sometimes daily! Miss Anna-Alyse may have a plan for Gia’s session that I like to believe looks something like this…

Gia’s Apraxia Recipe:
3/4 cup of 2-syllable words
1/4 cup of ‘L’ & ‘R’ sounds
2 tablespoons of 3-word sentences

…then my spunky, strong-willed, stubborn like her daddy 4 year-old comes in all like…

My Apraxia Recipe for today!!! 🙂 😦 🙂 😦 😦 :/
1 cup of 1-syllable words
1 cup of sensory seeking
A dash of tantrum


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4 year-olds think about two things: playing and sugar. Having a 4 year-old in this much therapy is not normal. It’s a constant balancing act of getting in as much therapy as we can in the hopes of quicker results, and not working her too hard with the fear of overwhelming her to point of regression. There’s this voice in your head that one week is saying, “She’s exhausted, maybe I need to cut back on therapy.”, and the next week is saying, “She’s doing awesome! Let’s add two more days of therapy!” It could drive you insane!

I recently went through a bit of a “funk”, where I had a nagging feeling that I needed to change something about Gia’s Apraxia recipe; both at home and at therapy. On the home front, we are testing out the new Speech E-Z Apraxia Program App (this is exciting!), we are cutting back on her sugar intake (this should be fun!), and we are starting Gia on a daily routine of fish oil, choline, and probiotics (yay for research!). On the therapy front, I had a much needed meeting with one of Gia’s PATIENT SLP’s, Anna-Alyse. Our meeting turned in to a counseling session, that in the end helped me make a decision I had pondered over for weeks. So I added another day of Speech, and decided to try some Music therapy once a week to top it off. So yes, overnight I added two more hours of therapy a week to Gia’s recipe, and I feel good about it! My gut was telling me she could handle more and needed more, so I listened to it. If it’s all too much for Gia, then I’m only a few steps away from the simple solution: First, my gut will tell me, then I’ll obsess about it, then I’ll have Anna-Alyse make me feel better, then I’ll just change the recipe again. Simple!

Having no control over something as life-changing as Apraxia has been a tough pill to swallow. I had to go through many sleepless nights and nail-biting sessions to finally swallow that square-shaped pill. I have my ups and downs, my days that Apraxia and I just aren’t seeing eye to eye. I can promise you I will have these days until the last minute of Gia’s last therapy session, and probably even after. Apraxia goes against everything that I am – it’s my dash of salt. I like instructions, I like directions, and I really, really like recipes! Gia and her clingy little sidekick, Apraxia are going to teach me a thing or two about life – let go, have faith and trust.

Gia is currently working toward mastering her 3-word sentences. With that being said, there are very few phrases she can use intelligibly that have more than 3 words. I’m going to leave you with one of them…

“Mom, calm down mom… Mom, calm down. Just calm down, mom.”

We’re meant for each other 🙂

Sharing my story (the truth)

Public speaking is scary for a lot of people, for a lot of different reasons. For some people, their fear is so debilitating, that they spend their entire lives avoiding it. For others, it’s a natural-born gift, and they thrive off the adrenaline rush. I would say for me, I land somewhere in the middle. I don’t hate it, but I certainly don’t love it either. The reason that it’s hard for me personally, is exactly that – it’s me, and I’m hard on me. I can be a bit of a perfectionist, a bit obsessive, and a bit of an over-thinker, and those three qualities can be a brutal combination for public anything. Plain and simple, being in the center of it all is just not my thing. I prefer to blend in. After college, most of us leave our public speaking days behind us. Unless giving presentations or speeches is part of your job description, many of us don’t have to worry about all of those eyes starring up at us, waiting for you to say something interesting. Up until recently, I thought I would be a part of the majority, and I was good with that. When you have a friend like Colleen, you will never be part of the majority.

Anyone who follows me on any level has probably heard about my friend Colleen, and her non-profit organization, SCOTT Foundation. If you are new to my blog however, you can catch yourself up on Colleen in two previous posts, “Differently Gifted” and “Speaking up for Gia“. I can promise you’ll hear her name again, and again and again!

Being asked by Colleen to share my story of Apraxia publicly at a SCOTT Foundation luncheon, was both exhilarating and taxing all at the same time. I love taking on new challenges that force me out of my comfort zone, but I equally hate failing at them. I can put so much pressure on myself, that it would be easier to just stay in my own little box that presents no real challenges (but that wouldn’t be much fun, would it?!). These are two sides of my brain that have battled each other since my early teenage years. So of course my first reaction to the opportunity is, “Of course I’ll make a speech! That sounds new and fun!”. Meanwhile, my husband is on the sidelines saying, “Oh god…here we go”. What can I say, he knows me well!

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The people that attend these luncheons are some of the most inspiring and selfless human beings I’ve ever had the privilege of meeting. Like myself, and like all of you, they all have a story. They are the perfect example of how we ourselves can control how our story ends. They have overcome their personal struggles by inspiring change and making a positive impact in their community. I was in such aw of this group after my first luncheon, that I called Colleen and told her I felt a little out of place. She somehow convinced me that I was not only worthy of sitting alongside these wonderful people, but that I was worthy of standing in front of them to share my story. How do you inspire, inspiring people? Well according to Colleen it’s simple, just be yourself! Do you know me but at all, Colleen?

I could have taken my speech in a few different directions, and one of the most difficult parts of preparing for it was deciding which direction I wanted to take. I kept going back to the idea that just one year ago, I would have never thought I would be in this space – a space of peace and acceptance. The world of Apraxia does not breed feelings of contentment, but rather quite the opposite. It’s a world of the unknown, that keeps you white-knuckling the edge of your seat. So how did I get here? Well, that gave me my answer. My story was much deeper than my daughter’s speech disorder, and I was going to tell it in it’s entirety. Essentially saying, here is where I was, here is where I am now, and here is how I got here. Writing that speech was therapeutic and reaffirming. I am there representing “What Would Gia Say?”, but “What Would Gia Say?” wouldn’t exist if it weren’t for the beginning and middle of my story, and I believe that now more than ever.

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Colleen and I right before my speech at the SCOTT Foundation luncheon.

My speech went well! I shared some things that I had never shared publicly before, and never thought I would. Sharing those things was the only real way to tell my true story. If I wanted people to fully understand how I got to this place of strength and optimism, I had to lead people down my path, and my path wasn’t always pretty. Yes, I cried through about half of it. They weren’t happy tears or sad tears. Speaking your truth is an overwhelming release, and that’s really where my tears came from. They were also tears for Gia. Not because of how difficult it is to have a child with Apraxia, but because of everything that child with Apraxia has taught me. Gia is the reason I had the courage to stand up there that day.

From the day I told Colleen about Gia’s diagnosis with Apraxia, there was two things she was determined to help me with: finding peace with my new reality, and raising awareness to the unknown disorder. Colleen regularly puts opportunities in front of me that have the potential to bring about awareness, make connections with others, and encourage personal growth. She leaves it up to me to take the opportunity or not. I’ve questioned and obsessed over every opportunity I’ve taken. but not once have I regretted taking one. I’m extending my path and adding chapters to my story, and that is the key to living a full and regret-free life.

Colleen built SCOTT Foundation from the ground up, not knowing anything about the non-profit community. She now selflessly takes her knowledge, connections and resources to others. She has a giving spirit and never wants a thing in return. Whether it’s someone looking to start a Foundation themselves, or someone who is simply going through a tough transition in their lives, she points them in the direction they need to go. She doesn’t lead them, she guides them. She doesn’t save them, she helps them save themselves. I’ve heard Colleen described as an angel more than once, and there are many people that would say she changed their life. Colleen doesn’t change lives, she changes people, and people change their lives.

Speaking up for Gia

May 14th, 2015 was our families first Apraxia Awareness Day since Gia’s diagnosis.

I started the day with the posting of my video. It was well received, and seemed to make an impact on a lot of people. I’m confident that my video did what I had intended for it to do. I think it brought comfort to my fellow Apraxia families, and I think it gave others a much better understanding of this mystery speech disorder they had never really heard of. I was amazed by all of the people who showed their support by not only sharing my video, but wearing blue to recognize the day.

Our family of course dressed in our blue that morning, and I got a quick picture with my kiddos to commemorate the day. If my dog could hold a camera, my husband would be in there too :). Nick is holding his IPad and Gia is holding a snack…typical. I love this picture for so many reasons.

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Soon after this picture was taken, my husband and I would be sharing Gia’s story for the very first time in a public setting.

That morning, we were scheduled to speak in Miss Kelly’s 6th grade classroom at Kyrene Centennial Middle School. Our family was to be part of a “Practice of Compassion” service project for these students, which I’ll explain shortly. This amazing opportunity was gifted to us by SCOTT Foundation, a non-profit organization that provides educational programs and experiences that inspire children toward selfless service. In a previous post, “Differently Gifted”, you can learn a little more about SCOTT Foundation, and my dear friend Colleen, who created it.

I met Colleen at the Middle School just as the classes were changing over, so things were a little chaotic. It was a fun kind of chaos that brought back some fun memories.

I was standing just outside the classroom, waiting for my husband, Jeff to arrive. I had asked him a week prior if he wanted to join me, and he happily agreed. Jeff is a pretty private guy, who supports me behind the scenes. Of all the things I involve myself in, I knew this was one he would appreciate being a part of. This was a big deal for me, and he knows when it’s time to step out of the shadows.

I started to feel nervous and unsure as I waited for him. I felt vulnerable without my laptop in front of me. I couldn’t write – I had to talk, and people were listening.

Just when I thought I might throw up, a bubbly 6th grade girl popped out of the classroom and with a sweet little grin on her face says to me, “I hope your daughter learns how to talk soon!” I just looked into her eyes in disbelief. No one had ever put it so innocently and clearly to me before. As adults, we generally don’t use such simple terms. This little girl was telling me what everyone ultimately wants to say, clear-cut and right to the point. It was an amazingly refreshing experience. So I cried a little inside, I may have gotten out a thank you, and just asked if I could hug her.

I took a huge breath of relief. This was going to go better than I thought.

Jeff arrived, and Colleen surprised him with a, “You’re going to be reading a book to the class”. Now Jeff prefers to be the background guy, so he was a little like, “Hehehehe (uncomfortable)”. He hesitatingly agreed, and Colleen happily giggled. I know Colleen well, and I knew what her giggle meant. It meant something along the lines of, “Oh, look how cute Jeff is…he really has no idea what’s about to transpire…”. Meanwhile, I’m standing there in the middle, rambling on like an idiot, “You’ll be fine Jeff. He’ll be fine. You’re good at reading stories. He’s good. You’ll be fine Jeff. He’ll be good. Yep. He’s good at books.” And……….break!

Colleen started the class off by briefing the kids about SCOTT Foundation. Sharing with them the joys of being kind to others.

Jeff was up next, and he was already looking more comfortable. How could you not after listening to Colleen? The story he would read is a book written by Vicki Savini called, “The Light Inside of Me”. This book encourages children towards listening to their inner feelings, and making good choices. It was the perfect ice breaker for us and the students, and so fitting for a SCOTT Foundation occasion.

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Colleen stood up a final time, explaining to the class the service project that they would be participating in. She told them about the little girl named Gia who suffers from a speech disorder. She asked that they really think about what it would be like to struggle everyday just to speak what’s on your mind. I could already see the wheels spinning in their heads.

Colleen then introduced Jeff and I as Gia’s mom and dad, telling them that we were here to share Gia’s story.

All of the students were given a “What Would Gia Say?” postcard, and asked that after they’ve heard from Gia’s parents, to write down their thoughts to this question, “If Gia could say anything, what do you think she would say?”. This would be their selfless service – giving a voice to a child with apraxia, and providing comfort and forever memories to her parents.

All eyes were on me. These were 11 and 12 year old kids, and It was my responsibility to explain the complicated disorder, as well as the feelings that come with it. I had no idea what to expect from them, or how they would take to me. I had no real plan, I just started talking.

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I proceeded with Gia’s story with Jeff by my side, popping in from time to time. Jeff surprised me by sharing more of the emotional side of apraxia than I did. He was opening his heart to these students, and I felt myself doing the same.

The more we talked the more I realized that these kids were actually listening. They looked curious and concerned. Toward the end of our talk, it was clear. These students truly understood Gia’s struggle. They had questions, lots of questions, great questions! They were the kind of questions that took thought and care to come up with.

The time came for their Practice of Compassion. If Gia could say anything, what would she say? Without a wink of hesitation, they started to write. It was emotional just watching them. Gia was just a name, she was just a face on a postcard, just a story. None of that seemed to matter to them. They wrote like Gia was their sister.

It was time for the most anticipated moment of the morning. One-by-one, the students would stand and read aloud, giving our daughter a voice, telling us what it was she wanted to say.

I was no where near prepared for what I was about to hear.

The first student stood up and read us her thoughts. I just remember being shocked at what she said. Her words were so much deeper and so much more thought provoking than I ever imagined a 6th grader could be. It was so unbelievable, that I couldn’t even cry. I was just sort of stunned.

She walked the postcard up to Jeff and I, we posed for a picture, and she picked up her signature SCOTT Foundation pillow pet.

What this girl had to say was no fluke, it just kept getting better. Not only did they take the time to share what they think Gia might say, but almost all of them took the time to write their own words to Gia herself. It was amazing.

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After the class ended and the room was starting to empty, I looked over to see two girls still sitting and writing. They ran out of room on their postcards and got a piece of paper from their notebook. They weren’t worried that the bell had rung, they weren’t stopping until they were done. The letters they wrote were specifically addressed to Jeff and I. They had taken the time to write to us, Gia’s parents, filling us with love, support and encouragement. My heart was so full, I couldn’t even take anymore.

I could never truly describe the time I spent with Miss Kelly’s class, or how it made me feel. It’s something you can’t put in to words. They gave me one of the most special gifts that I’ll probably ever receive. It was one of the most pure and genuine experiences I’ve had in my life.

They empathized on a different level. It was on a level that adults can’t understand, because we’ve just been here too long. These 6th graders are still new to this world, just trying to find their place, just trying to fit in. They want Gia to fit in too. Just the thought of this three year old girl struggling with being different, affected them. These kids gave me hope. They made me feel better about Gia starting school someday.

All we ever hear about is the bullies. Kids like this don’t make the news. I didn’t even know that this kind of good could exist in kids who are growing up in a world with a whole lot of bad.

I will share these postcards with Gia some day, taking them out during different phases in her life. There will come a time when Gia’s therapy days are over, and this is all a thing of the past, but Apraxia will always be a part of Gia, it will always be with her. These little gifts we receive along the way will be comforting reminders of the countless people that were fighting for her voice to be heard.

So you can experience even a little of what Jeff and I did, I took some shorts clips from what the students wrote, and listed them below. Enjoy!

What Gia would say…

“One day my light will shine bright”

“I am normal, I am like any other child. I’m just a little different, but that’s ok. Different is amazing.”

“Things happen for a reason, and I will overcome my challenge.”

“My light inside of me shines with ideas and thoughts.”

“Thank you for not giving up on me.”

“People will know what I’m thinking, one day it will happen.”

“Thank you mom and dad, for working just as hard as I do.”

“Thank you mom and dad, for accepting how I choose to express my feelings.”

“Don’t take speaking for granted.”


What they would say to Gia…

“Even though I don’t know you, I love you.”

“Gia, you are beautiful and you can do anything.”

“You are a fighter.”

“Being different is good, no one wants to be ordinary.”

“I would accept you as a friend.”

“You are special, that makes your personality.”

“Chase your dreams and they will come true.”

“You are perfect and hardworking”

“If you need help, we can help.”

“I love you.”

“Gia, you are unique and beautiful.”

Apraxia Awareness Video 2015

Awareness-Day-Logo-4Today is a special day. It’s a day that just one year ago, I would have never recognized or even known existed. Today is Apraxia Awareness Day.

On May 14th, 2013, the Childhood Apraxia of Speech Association of North America (CASANA), celebrated the first ever Apraxia Awareness Day. This was a victory for families of Apraxia, to have their child’s struggles finally be recognized. These kids are fighters.

No matter what the day of awareness may be, It’s a time to educate and inform ourselves and others. Every year that goes by, there will be misconceptions to unmask, new statistics released, the latest treatments available, and so much more. Never again will I scroll through an Awareness Day announcement on social media, without googling and learning more, and I would challenge everyone to do the same. We help ourselves, our children, and our community when we educate ourselves.

CE66joiUIAAHN4-To recognize my first Apraxia Awareness Day, I put together a special video with the help of just a few of Gia’s biggestsupporters; her family. Through this video I hope to bring comfort to families who are fighting the Apraxia fight, and open the eyes and ears of those who are not.

A very special thank you to Gia’s Aunts, Uncles, Cousins and Grandparents who participated, and of course her daddy. Gia will thank you all someday.

Another thank you to Tori Starling of Jakes Journey with Apraxia, for featuring Gia today. Tori’s blog is the inspiration behind What Would Gia Say, and I would encourage everyone to see how far Jake has come in his journey. He gives me hope.
http://jakes-journey-apraxia.com

Quitting my job

I remember the day it happened, the day I knew. It was Friday, March 20th to be exact. I got off work at 5:00 and headed over to Nick and Gia’s preschool to pick them up for the day. I walked in and did my usual scan of the room, looking for the blonde-haired, blue-eyed children that look nothing like me. Nick and I locked eyes right away, and he greeted me with his typical, melt-my-heart “Hi mom! I missed you so much today! I didn’t pee my pants!”. My typical response followed, “Oh Nicky, I missed you so much today too! I’m so proud of you for not peeing your pants, but you do know that’s pretty normal right?” Now usually by this time Gia is right there with us, giving hugs and kisses, using her own special words to tell me all about the day. She was no where in sight. I took another scan of the room, and called out her name several times. She slowly popped her head up from behind a shelf, and I was shocked at what I saw. She looked like a disaster of complicated emotions. She looked sad, she looked weak, she looked angry, she looked tired, she looked discouraged, and she looked defeated. My eyes welled up as soon as I saw her. There was pain and struggle all over my daughter’s face, and it made my heart hurt. I glanced up at the teachers, looking for some kind of explanation. Before I could ask the inevitable questions of concern, the director approached me with the obvious, “She had a rough day”. Continue reading

What Would Gia Say?

What would Gia say
If I told her she was smart
If I told her to stand up, stand out
You set yourself apart

What would Gia say
If I told her she was brave
If I told her to look forward
Walk the path that I will pave

What would Gia say
If I told her she was strong
If I told her don’t give up your fight
This journey will be long

What would Gia say
If I told her I was proud
If I told her keep on reaching
Stick your head above the cloud

What would Gia say
If I told her there was hope
If I told her she will conquer this
Together we will cope

These thoughts of adoration
New feelings everyday
Often times I ask myself
What would Gia say?

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