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

 

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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

Gia’s First Progress Report

Most who know me, know that I just love a good goal! Whether it’s a half marathon, or completing a beautiful wall collage, I thrive off of accomplishing something. When I learned that goals would be set for Gia’s therapy, and every 13 weeks, reflected in progress reports, I thought, “Great! This is right up my alley!” Boy, was I wrong!

Shortly before I was due to receive Gia’s first progress report, a slight bit of panic set in. The anticipation of what this piece of paper might say, was driving me mad! My head was consumed with anxiety-filled questions, “What are Gia’s goals? Has she met them? What if she hasn’t met them? What does that mean? I know she’s improving, but is it enough?” On one magical afternoon, our SLP, Anna-Alyse emailed me the progress report, and the suspense was finally over. When I spotted it in my inbox, I sat up in my chair like a board was glued from my back to the top of my head. My eyes were drawing in to the screen like a magnet, and I had a severe case of tunnel vision. I admit I was acting a little crazy, like this email had some sort of life-changing information in it. So I took a deep breath, and started to read. Continue reading

Differently Gifted

I was recently paid a long overdue visit, by a very special friend of mine. Now, when I say that Colleen is a special friend, I don’t just mean that she is someone who is important to me, I mean she is truly, a one-of-a-kind, special human-being. Losing her only child in 2007, Colleen has experienced tragedy, that many of us could never, and will never comprehend.  Her sudden loss had became a marker in her existence, dividing her life into 3 categories: before, during, and after her son’s death. I was lucky enough to have known Colleen during each category of her life. I always knew she was special, but I watched her evolve into greatness! Colleen is not super-human, she went through every stage of grief that anyone who suffers loss will experience. Through each inevitable stage of grief, she made choices that would little by little, change the direction of her life. The choices she made, were a reflection of the shift in her priorities, and the shift in her priorities, was a reflection of her loss. Just days after her son, Scott passed, she made a decision to use her son’s legacy, and create a positive impact in her community. To make a very long, and inspiring story short, Colleen is the founder of SCOTT Foundation, a non-profit organization that provides educational programs to inspire our youth towards selfless service. With the help of many other special people, Colleen was able to create something that she knew her son would be proud of. It was an amazing thing to watch! Continue reading

Sensing some sensory

“She’s just quirky.”, “She loves accessorizing!”, “She must be cold.”; this was my repertoire of justifications, every time Gia would come marching out of her room in an entire outfit that would include a jacket, a hat, a scarf, 5 headbands, 3 necklaces, 2 pairs of socks, and even a pair of gloves. It didn’t matter if it was winter or summer, she had this overwhelming desire to cover her body from head to toe. This didn’t happen all the time, but rather in very sudden, and explosive spurts. She would go to various areas of the house, seeking out items to consume her little frame, and it didn’t even have to be clothes; she would sit in a hamper, put a box over her head, or wrap her arm in string. I’ll be honest, it was weird, but it was Gia!  My son, Nick always took life a little more seriously, insisted on doing things perfectly, and generally didn’t see much outside the box. Gia on the other-hand, was my free-spirit, she was confident, independent, and did EVERYTHING outside the box, and I loved this about her! All kids are different, right? Well yes, but as Gia got older, I noticed these “quirky habits” were brinking on the edge of obsession. Other caretakers in Gia’s life began to take notice. The very first daycare she went to, gave her a cute little red basket with toy fruit for Christmas. I think their exact explanation for the gift was, “We know she likes to put baskets on her head!” Continue reading

The Apraxia Angels

Gia’s speech therapist had seen Apraxia in children before, and couldn’t help but notice some of the “typical” signs in Gia. As strong as her feelings were, she regrettably admitted that this was not something she was qualified to diagnose, or even provide therapy for. She explained that this wasn’t your typical speech delay, but that it was a neurological speech disorder, that would require years of intensive “drill” therapy by a specialized therapist. As I held back tears, I asked, “What does this mean for Gia’s future?” With a smile on her face, she replied, “Gia has a bright future!” She felt confident that someday, she will sound just like her peers, and this will all be a thing of the past. In the same breath, she was honest with us, and said this would be a very long road, and our lives will revolve around her treatment. “I’m going to refer you over to a place called The Foundations Developmental House, who specializes in Apraxia”, she said. “They will be able to help Gia”.

My husband and I were quiet on the way home. At that moment, we both needed to process this information on our own. We went to this meeting with very different views about Gia, but left with the same heart-breaking news. I went through a range of emotions on the 15 minute drive home, but as I sat in the passenger seat, staring out the window, I cried silent tears of relief. I finally knew how to help my daughter, my husband and I would finally be on the same page, and I could finally leave the months of denial behind me. Continue reading