The girl on the right

I remember the day I found out that Gia was going to be a girl. It was a good day. It was the news I was hoping for. I already had my boy at home, and who doesn’t want one of each? Our family was complete, just how I pictured it.

For the next 20 weeks, I shopped for pink.

I couldn’t get enough ‘girl talk’. I welcomed the insight of others, reflecting on their own experiences with raising a daughter – what it looked like, what it felt like, what it sounded like.  Even perfect strangers were ready with their own unique findings and personal observations.

But really, there was nothing unique. Over the weeks I would hear a lot of the same. The differences in raising boys and girls was made quite clear.

“Girls are so much less active and rowdy than boys…”  “They play calmly and quietly.”

“Girls are so much less messy and dirty than boys…”  “They keep things neat and like to be clean.”

“Girls are so much more fun to shop for than boys…”  “They wear pretty dresses and fun little skirts.”

And of course there’s my favorite…

“Girls develop so much earlier than boys…”  “They talk sooner and mature faster.”

Well this was great – I had a plan – I love to have a plan! Before she was even born, I knew exactly who Gia was going to be. So I boxed her up in a pretty little package with a big, huge, sparkly bow on it. She was going to fit perfectly.

It was about three years old when Gia ripped off that bow, punched her way out of the box and dusted off the sparkles.

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Okay. It’s cool. I can go along with this. I didn’t really like bows that much anyway.

So I went with it, but was determined to figure her out.

Hmmm…what kind of box shall I try next…

So I tried every box I could come up with. I tied them with ribbon this time. No bows. Definitely no sparkle.

No, Gia? Okay. It’s cool. I just won’t curl the ribbon this time. It still looks pretty.

But no…

So I moved on to some new boxes, different shapes this time. I’ve got it! Twine! Maybe she’s a twine kinda girl. I like twine. It even comes in pink.

No, Gia? Okay. It’s cool. We can do the brown twine.

But no…

Here we are, two years later, and there’s not a box that could fit that girl. I searched far and wide. It doesn’t exist. As it turns out – she isn’t what ‘they’ told me she would be.

She’s actually so much cooler…

She chose a Spiderman Build-A-Bear – gave it a Minion voice – brought it home in a pink backpack.

When she’s done eating, you wonder if she got any in her mouth.

Her imagination will take her from ‘playing school’ to ‘ninja warriors’. She goes on bear hunts daily – sometimes with a “baby in her belly”.

She changes 5 times a day – I find outfits strewn about the house.

Elsa is her idol. Supergirl is her alter ego.

She hates dresses. Don’t get her started on skirts. But she’ll accessorize a t-shirt and jeans like nobody else.

Her energy never burns – she’s full of second winds.

She lives for the outdoors, the rain, the cold weather, the accessories that go with it.

Hand her a barbie and she’ll tear it limb from limb. Hand her a baby doll and she’ll nurture it like a fragile piece of glass.

She “booty dances” consistently throughout the day.

Her room has to be as pink as I can make it. It’s blinding.

And she has a speech disorder called apraxia. I didn’t hear the word “mom” until she was three years and one month old.

She’s also one of the happiest people I know.

Funny enough, I was a lot like Gia at her age. I decapitated every barbie I owned. I was a messy eater, and walked around with mystery stains on my shirts. I left a disaster everywhere I went. I’d lean back in my chair at the dinner table and fall to the ground, hitting my head – get myself up and did it all over again. I was carefree and clumsy.

I was an athlete. I preferred sneakers to high heals. I felt so uncomfortable in dresses. I probably would have worn jeans to the Prom if I could. Shopping was the WORST. I don’t ever remember liking the colors pink and purple. I was always more of a yellow and orange kinda girl.

But somewhere along the way, I wedged myself back into ‘the box’ – it’s pretty cramped in here.

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See that girl right smack-dab in the middle?

She’s the one looking desperately at her dance instructor for guidance. She refuses to raise her left arm until she knows exactly what it takes to create the perfect Plie. She carefully studies the movement in her head, coming up with every possible scenario that could lead her to failure.

She’s the one that looks confused and a little insecure – but boy is she determined. That girl is motivated. She will nail that Plie if it’s the last thing she does. Nothing will stop her – but boy is she guarded.

She’s the one beating herself up, but refusing to give up. She wants to be the best, but really, she just wants to blend in. But if she doesn’t stand out, she’s doing something wrong.

That’s me. I’m that girl.

I strive to join Gia on the right. She invites me everyday. It looks more fun over there.

 

 

Dear Gia

Dear Gia,

Daddy and I just dropped you off – it’s your first day of Kindergarten.

Right about now I’m supposed to say, “That just flew by!”, or “Where did the time go?”. But I’d be lying if I said those words – I’d be trying to blend in with the other parents. We didn’t get to take the path where time flies. Our path was long and uphill, with a lot of rough terrain.

But you know what, Gia? You did it. You earned your spot in that classroom. I couldn’t have done this for you. I couldn’t have gotten you here on my own. I gave you the boat, but it was your job to paddle. You’ve worked tirelessly for every word you have. Every. Single. Word. From therapy, to doctors, to preschool and back – your work never stopped.

And you know something else, Gia? You never complained about it. Not once.

I’ve spent the last two years advocating in your fight to be heard. It’s been really hard. At times it had more ups and downs than mommy could take. But it was your attitude that kept me going. It was your strength that pulled me forward.

Now here I am, sitting in an empty house, feeling a little lost without you. I miss you deeply. My calendar looks so empty. It’s been you and me against apraxia. We’re a team…I feel like I’ve lost my partner.

I’ll be honest though, Gia…I’m a little tired. I could really use a break. A nap sounds kinda nice. A pedicure sounds even nicer. I could use some lunch dates with daddy and some morning coffee with your Aunt Trish.

So today is bitter sweet. It’s a day I’ve both feared and looked forward to.

I did everything I could to get you ready for this moment. But today, as we made our way up to your new school, I couldn’t help but wonder if I had done enough. With your hand in mine, we walked into a classroom full of Kindergarteners. My head was spinning with questions I felt desperate to know the answer to – will your peers understand you? Accept you? Make fun of you? Will you struggle with Reading? Writing? Dyslexia?

Did I do enough?

In your own little way, you brought me peace and turned off all the noise. You looked so at home in that classroom – so happy and self-assured – so ready. It was clear, you were right where you wanted to be – where you needed to be.

So I grabbed your heart-shaped little face, looked you right in those big blue eyes and said goodbye with a kiss. I slowly made my way out the door, watching you as I left. But I couldn’t leave just yet. I needed just one last picture. So with camera in hand, I ran back to greet you at your desk. But you, Gia, you greeted me back with exactly the words I needed to hear…

“Mom, you gotta go!”

I’m so proud of you, Gia. Today is your day!

Love,
Mommy

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Registering for Kindergarten

I sat on my bed hustling through Gia’s Kindergarten registration packet – parent’s names, child’s name, address, phone number, etc. etc., same old same old…let’s get through this.

Then it came. There it was.

This page wasn’t supposed to apply to me. This wasn’t supposed to be my life. This was other parents. This was other kids. Not me. Not my child.

But it was me. It was my child. It just didn’t feel real.

I’ve had a year and a half to get ready for this moment, but I wasn’t ready. I accepted this reality a long time ago. So why did this feel so new? I felt the same punch in the stomach I did when I found out Gia had apraxia. That same rush of feelings went straight to my gut.

So next to Special Education Services, I set the ball of my pen in the “yes” box. I think I held it there for a full minute. I made my checkmark and burst in to tears. I didn’t just cry, I sobbed.

My husband, Jeff looked up from his desk, “What’s wrong??”. I could barely talk when I looked over at him to respond. I finally got out the three short words that summed up my tears, “It’s just surreal”.

Jeff likes logic. He’s a big picture kind of guy. He likes to fix. You have a problem? Well he has your solution. So he did what he does best and tried to help me through my feelings the only way he knew how. It felt like a math equation – this plus this equals the reason you’re feeling this. So I stopped him. “This is not what I need, Jeff.” I cried. “I just need like 10 minutes to just cry. That’s all I need. I just need to cry, Jeff. Please just let me cry!”

My son walked in to ask his daddy something. I held my breath, looked down and covered my face with my shirt. My husband lead himself and Nicholas out of the bedroom and shut the door behind them. He could see it wasn’t time for solutions. So he gave me what I asked for – he gave me my 10 minutes.

I got under my covers and let it all out.

I cried and I cried and I cried…for about 10 minutes. My tears turned in to sniffles and my sniffles turned in to a blank stare at the ceiling.

There was part of me that wanted to call Jeff back in to hear his math equation – maybe he could fix me.

There was part of me that wanted to call my mom and ask for her words of wisdom – maybe even cry some more.

There was part of me that wanted to call my sister for her empathetic ear – maybe she’ll cry some more with me.

But no. Not this time. How could I possibly explain this ridiculously weak moment? I didn’t understand it myself. It was far too deep for Jeff’s Math, too complicated for my mom’s wisdom and too confusing for my sister’s empathy.

I’ll just have to figure this one out on my own.

Checking that “yes” box brought me all the way back to phase one of apraxia grief – the darkest and loneliest phase of them all. The questions of the future, the fears of the unknown – it was all back. The wound reopened. It was a pain I didn’t ever want to feel again, and didn’t expect to. I was at least two phases past this.

But here we are…the future has officially begun, and the unknown is starring me square in the face. The real worries of apraxia begin on that first day of school.

What will apraxia mean for Gia? Which apraxia recovery story will she be? Will she be the one that graduates from speech at 5 years old, excelling in school without a hint of disability? Will she be the teenager still in therapy, and struggling with dyslexia to boot? Or one of the many scenarios in between?

I don’t know. I hate not knowing. I’m not good with the not knowing.

Come July 25th, I have no choice but to let her fly on her own. But what will she do without me?

Then I look at my daughter and I ask myself, “Does she look worried?”

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No. Not at all. She looks ready to take on the world. She’s beaming with confidence and I’ve never felt more vulnerable in my life. She’s as independent as they come and I feel completely out of control.

Maybe the real question should be…what will I do without her?

I’ve spent so much time building Gia’s wings, never realizing that I was going to need wings of my own.

The next day…

I approached my son, “Guess what, Nicholas?! You and Gia are going to be in the same school next year!”

“What? Really?” he replies.

“Yes! Really! Isn’t that exciting guy!” I said

Concerned he says, “Well…I guess…”

I look at him puzzled, “What’s wrong, Nick? Why do you look sad about it?”

His voice starts to crack, “I don’t know…it’s just…is her teacher going to be able to understand her, mom?”

I smirk a little, “Her teacher will know she has a problem with her speech, Nick. She’ll know that she has to be patient with Gia’s words.”

His eyes well up, “What does she do if the teacher doesn’t understand her? I just don’t get that, mom. How is she gonna learn things? How is she gonna make friends?”

I tried again, “Nicholas, you don’t have to worry about all of this. Gia will be fine. Her teacher will make adjustments for her when she needs to. She can learn the same as the rest of the kids. And Gia has no problem making friends. She’ll be fine.”

He bursts in to tears, “Adjustments?? What does that even mean?? I just don’t get this, mom! Her words are too funny to go to school!”

And then it hit me…

It wasn’t time for solutions.

He didn’t want me to fix it.

So I walked out of the room…

And gave him his 10 minutes.

 

 

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.

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.

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 🙂