Gia has a brother

Gia has a brother…his name is Nicholas.

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In the same month that Gia received her apraxia diagnosis,  Nicholas started wetting his pants. In just two weeks time, Nick went from a once a day oops, to a six or seven times a day habit. It got so bad, that just leaving my house with him gave me serious anxiety. I felt like I was potty training my son all over again; the son that had been potty trained for a year and a half.

Nick’s preschool teachers were sending home a bag of soiled clothes almost everyday he was there. After about a month, his teachers finally spoke up, “Is there anything that’s changed at home? Have you recently moved? Is there anything different going on that we should know about? Anything?”

I racked my brain.

“Well…” I said, “I guess there is something different.”

It never occurred to me that Gia’s recent diagnosis could be the culprit of this dramatic statement that Nick was so obviously trying to make.

I remember my drive home that day vividly. The kids were in the backseat fighting, while I was in the front seat connecting dots.

So many little things about Nick had changed in such a short amount of time. In between all of the pants wetting, there was so much more. My sweet and compassionate little guy had become angry and combative. He cried a lot. He stopped doing the things that got him the positive feedback he normally thrived off of. He almost seemed to prefer negative attention.

Nick didn’t like Gia anymore. Everything about her bothered him. Everything – the way she played, the way she laughed, the way she hugged, all of it. Something about his sister just irked him to his core. Gia is no wallflower. She didn’t put up with a second of her brother’s mistreatment. She fought back and she fought back hard.

My days were spent breaking up fights that had become downright vicious at times. I watched my ‘Irish twins’ go from being best friends to the worst of enemies.

It was one of the most stressful times in my life.

Doesn’t Nick know I don’t have time for this? I have Gia’s apraxia to worry about!

Just days after my conversation with Nick’s teachers, and still under my cloud of apraxia grief, I walked in to the lobby of FDH with both of my kiddos in tow. It was just another day, just another speech therapy appointment. A family followed in behind us, and in typical Nick and Gia fashion, they made a beeline for the two kids. The kids were a little shy, so the mother quickly spoke up and said, “Hi there! What’s your name?”. Nick jumped in first, “My name is Nicholas”. The mother’s body language then turned to Gia. Just as I was preparing to explain why Gia wouldn’t be participating in the conversation, Nick wrapped his arm around Gia’s shoulder and pulled her close.

“This is my sister, Gia. She talks a little funny. You have to listen very very carefully, and you have to be very very patient.”

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I had spent so much time in my head, going over what I might say in this inevitable situation. Nick’s spontaneous explanation was so innocent but perfectly executed. I couldn’t have said it better myself. He taught me something that day. His words made such an impact on me, that I featured his statement in my apraxia awareness video.

I never explained Gia’s apraxia to Nick – after all, he was too young to understand.

I never coached Nick on what to say in this situation – after all, he was too young to understand.

I never demanded that Nick speak up for Gia – after all, he was too young to understand.

But was he too young to understand?

He showed me in that moment that he knew more than I ever gave him credit for. Which meant he had all of the feelings that went with that knowledge. His life had changed too. He was grieving the same as I was. His grief just came from a different place, a different perspective. The shift in our house was immediate and dramatic, and he felt it. He felt it all.

He was listening to me talk about Gia. He was riding to therapy for Gia. He was seeing me cry over Gia. He was watching me write about Gia. He was hearing my husband and I argue about Gia.

That day in FDH was a turning point for me. I knew Gia was going to be okay; that Nick would protect her, always. But I needed to protect Nick. It was my job, my obligation to create balance in my home again. Somewhere that Nick would feel safe, confident and important. Nick had joined me under my cloud, and it was my duty to lead the way out.

It was time to parent more consciously.

If Nick is talking, I listen. If Nick does something good, I praise him. If Nick helps me, I thank him. I try to be more present, make more eye contact. We get him involved in Gia’s speech therapy at home. We set aside alone time, just him with mom or dad. We give him positive reinforcement and reward him for good behavior.

So things got better. Then they got worse again. Then they got better. Then worse again. Then better. Then worse. You get the picture.

It’s been a little over a year since ALL of our lives changed. Nick’s struggle to adjust to apraxia life continues. His feelings toward his sister ebb and flow. Some days he embraces Gia, helping her with hand cues and sounding out words. Other days he loathes her, screaming that he “hates her words”. I tear up just writing that.

He resents her apraxia, but doesn’t want her to make progress. It’s confusing but it makes so much sense. Gia doesn’t need his help like she used to. She can introduce herself now.

So what is it that Nick needs, to feel like his value is the same as Gia’s apraxia? I still don’t have an answer to that question. Nick is just trying to find his place in all of this. What he needs may just be time.

Nicholas Tufano is one of the neatest people I know. There is something so special in his heart and in his mind. He is a deep, emotional and highly sensitive human being. He’s very intelligent, and that intelligence makes him complicated. So. Very. Complicated. He’s a genuine soul – like no one I’ve ever met. Sometimes I want to fast forward, just for a day, just to see who he becomes. That kid brings me so much joy. He’s my first born. He made me a mom.

If only he knew.

Nicholas has a sister…her name is Gia.

View More: http://molliecostleyphotography.pass.us/tufano15

 

A new year, a new Gia

I knew it when I saw it. This was it. This was my cover photo. This was the picture that would introduce Gia to the world. The picture that would unveil my less than perfect reality.

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I love this picture. It’s beautiful. But it’s so much more than that – it’s symbolic.

This photo was captured just two weeks before Gia’s diagnosis with Childhood Apraxia of Speech, during what could only be described as a disaster of a photo session.

I remember it like it was yesterday. The fall family pictures of 2014. You know the pictures – the ones you need to go perfectly so you can send out the perfect holiday card that looks like everything went perfectly. Yep, it was those pictures.

So on October 28th of 2014, we drove to the perfect setting, dressed in the perfect outfits, to meet the perfect photographer. It was going to be just perfect!

As soon as Gia stepped out of the car, it was like she stepped on to another planet – Planet Overdrive. She was so distracted by everything around her, that you couldn’t get her attention for anything. She wanted nothing to do with us, the camera, or even an ice cream truck if it drove by. The entire session became a broken record of, “Gia! Gia! Gia!”. Nothing. We had no control over her, and she seemed to have no more control over herself.

Well there goes my perfect holiday card.

I left holding back tears. Had I completely failed as a mom? Was I raising an undisciplined, out-of-control brat? Or was her behavior symptomatic of a bigger problem? But what problem?

The apraxia news came shortly after, followed by the “suspected” Sensory Processing Disorder conversation.

My world imploded, but it suddenly made sense – beginning with our family pictures. It was one of many lightbulb moments to come. You can’t ask a child with untreated sensory issues to join you in an unknown environment, with a camera in their face and everyone shouting their name. You just can’t.

It was one year ago that I wrote my first post,  Apraxia? What’s that?, and What Would Gia Say? was officially born. When it had come time to choose the cover photo for my blogI turned to my imperfect fall family photos.

In a sea of perfectly unposed “candid” shots, there it was – the perfect picture.

It was a flawless representation of Gia at the time. She was like any other three year old that was ready to talk, but she couldn’t, and she didn’t understand why. This picture shows her struggle. I see a little girl who looks vulnerable and insecure, who’s confidence is depleting. She even looks a little lost, a little scared. When I look at this picture, I can see her, she’s in there. She’s a beautiful flower that’s just waiting to bloom.

I remember standing behind our photographer as she took this picture, desperately trying to get Gia to look, smile, pay attention…anything! I pleaded with her to get that scarf out of her face and stop covering her mouth. If Gia had listened to me, this would have been a pretty picture, but not my cover photo.

Here we are today. It’s a new year, and a new Gia.

The little girl you see in that black and white photo is not who Gia is today. So that beautifully imperfect picture has been retired. It makes me sad to see it go, but so grateful for what it means to leave it behind. What that picture represents now is so much deeper, and something only I, as Gia’s mom will ever really understand. It will forever be special to me.

So for my regular readers, I’m sure you’ve noticed – a new cover photo, and a lighter and brighter blog!

On October 3rd of 2015, I gave those fall family photos another try, only this time around, the word perfect had taken on a whole new meaning. You might call it, perspective. I simply hoped for the best, and the best was whatever Gia could give me.

Once again, I left holding back tears. Did that really just happen? Was that my daughter? Has she really come this far? Made that much growth?

Gia was happy, confident and controlled. She was completely in-tune with us and the reason we were there. Her environment was secondary, and she looked comfortable in it. Not only was she excited to take pictures, but she TALKED about getting them taken. It was a dream.

I was so proud of her.

Needless to say, I had a lot of pictures to choose from. My husband and I both agreed, this was the one. The new cover photo. The new Gia.

View More: http://molliecostleyphotography.pass.us/tufano15

This picture spoke to me much like the other. It fully embodies Gia and the stage of apraxia that she’s in today. I’ll let you use your own interpretation of why we might have chosen this particular photo (I’d love to hear what it is).

I’m going to end this post and start a new year with the famous words that every apraxia parent has or will at one point utter – she has come so far, but she still has so far to go.

What Would Taylor Say? – Meet Crystal

I’m honored to introduce Crystal – a mom to a six year old girl with apraxia. I asked Crystal to contribute to What Would Gia Say?, because she and her daughter represent hope; something I and so many others are searching for everyday. They also represent a later stage of therapy for apraxia, that took a lot of fight and heartache to get to. This family is truly inspirational. Click here to learn more about Crystal, and how we came to know one another.

by Crystal, Contributing Writer

From about three months of age, my husband and I knew something just wasn’t developmentally right with our daughter.

Taylor, who is our third child, was not developing like our first two kids. People say not to compare your children, but it’s hard not to; comparing them may be the reason we knew something was off. Going against my motherly instinct, my husband and I decided to let things go and hope that Taylor would just suddenly, “catch-up” developmentally.

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Months began to go by, and still, Taylor did not coo, did not babble, and was not meeting any of the developmental milestones.

After an evaluation from a near-by children’s developmental center, it was determined that Taylor, at 1.5 years old, was considered to be at 8 months old developmentally. After reviewing the results of the evaluations, the center recommended Taylor be seen for speech and cognitive therapy.

I asked myself, “What did I do wrong? Why is she so far behind? What piece of the puzzle was I missing?”.

At her two year wellness visit, Taylor’s doctor wasn’t overly concerned. He said it was probably because she was our third child. “Why would she talk?”, he stated, “Everyone does everything for her and speaks for her”. He explained that if Taylor was making progress, even if it was slow, that it was okay to just watch her grow for now. He did however, recommend we have her hearing tested along with a cat scan to make sure all the normal structures of the brain had developed properly.

Since Taylor was making slight progress, and the fact that a CT would expose her to an abundance of radiation, we opted out of the test.

So we continued with her therapy hoping it was just a delay.

After little progress and many speech sessions, Taylor’s speech language pathologist said, “I think Taylor has what is called apraxia. Have you heard of it?”  At the time, I had never heard the term “apraxia,” so I had no idea what it was.

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Taylor with Erin Dona (from Childrens Developmental Center in Casper, WY). Erin worked with Taylor starting at age two, up until our move to Arizona.

Until that moment, I was thinking that Taylor was just severely developmentally delayed in her speech, but deep down I knew something was different. My second child had a speech delay and needed help with articulation but this was completely different. Taylor was two and a half and completely non-verbal. I anticipated her needs and could communicate with her using the  20-30 signs that she had. She wanted so desperately to speak, but the moment she opened her mouth, no words came out. Her SLP was working with bubbles at the time and it seemed almost impossible for Taylor to say “pop”.

I ran home and instantly researched apraxia.

After reviewing the signs and symptoms, I quickly realized that my daughter is a child who suffers from childhood apraxia of speech.

I was so relieved to finally feel like someone knew what they were talking about. Until then, her pediatrician, ENT, and other doctors and therapists seemed clueless as to what might be happening with Taylor.

I wanted my child to be able to sing “Twinkle, Twinkle, Little Star” before bedtime, or let me know what her birthday wishes were. I didn’t know if that day would ever come.

Soon after Taylor’s SLP suggested she had apraxia, we moved.

After looking long and hard and experiencing many SLPs trying to tell my daughter to say such things as “Mom” or “Dad”, and getting frustrated with her because she wouldn’t perform for them, we finally found our fit at the Foundations Developmental House (FDH).

FDH specializes in apraxia diagnosis. What a relief! It was here that we learned how uncommon it is for apraxia to be the only diagnosis, and that it often times is a secondary diagnosis. This explained so much.

Taylor began therapy with a new SLP, Jeremy. He was the best thing for Taylor and I. Jeremy worked with Taylor two days a week for two years, making huge strides.

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Taylor and Jeremy Legaspi (from Foundations Developmental House in Chandler, AZ). Jeremy worked with Taylor for two years starting at the age of three.

Jeremy was always so patient with Taylor. When she had her “moments”, he would refer to them as “Taylorisms”, and he would just keep going.

There were so many moments that were difficult and challenging for Taylor and our family as a whole. I look forward to sharing more, and giving hope to other apraxia families.

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?! What’s that?

To say that Gia was a surprise, would be an understatement! After needing fertility treatments to have my son, Nicholas, I found myself pregnant AGAIN, when he was three months old. Ready or not, Gia came into our lives just 9 months later. I was terrified at the thought of bringing home a second baby, but Gia made it not so terrifying. She was your typical baby, as long as her tummy was full, and her diaper was changed, she was happy! She slept through the night at 8 weeks-old, smiled like it was her job, and let her brother be the star that he so desperately wanted to be. In the first year of Gia’s life, she met all of the standard milestones on time; she rolled over at 4 months, sat on her own at 6 months, crawled at 9 months, and walked at 12 months. She babbled constantly, but had yet to say a real word by her first birthday. I wasn’t concerned, and neither was our pediatrician.

Gia’s 18-month checkup came, and still no words to speak of, just a lot of gibberish. My son was a late-talker, so I didn’t think much of it. I was looking at a healthy, normal little baby, and I figured that the pediatrician would see that too; I was wrong. She very bluntly said to me, “I’m going to flag her in the computer for Autism, because speech delay can be an early sign.” Two thoughts went through my head: one, “Oh my god, my daughter has Autism!”, and two, “What a B****! My daughter does not have Autism!” From that day, until Gia turned 2 years-old,  I found myself studying everything my daughter did. She would do something that I thought was “weird”, and I would run and google it; It was insane! I felt like my brain had been poisoned with this toxic information that I just wanted to go away. I stopped enjoying this happy, and carefree little girl in front of me, and became consumed with what everything meant. Continue reading