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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What Gia is saying

Meet Gia and her sidekick, apraxia…

I have never posted a video of Gia talking.

Don’t get me wrong…I wanted to.

When I first got my blog up and running, I decided I would make progress videos of Gia. According to my plan, it would go flawlessly and Gia would really enjoy doing it. I would make one every three months, post it to my blog, and maybe even lay in bed on a Friday night and obsessively compare them to one another. It was gonna be so fun. The only bump in my road would be my husband laying next to me, rolling his eyes.

Gia decided otherwise. She hated that camera. The second it went up, she shut down. I didn’t understand – she was supposed to enjoy it. What was I going to do on my Friday nights?

So I had to concede that Gia didn’t give a crap about my plan and neither did apraxia.

For Gia, that camera represented some kind of pressure to perform. I could see that it made her uncomfortable. She knew she had a difficult time getting her words out, and she seemed to know what I was looking for. This combination caused her great anxiety, and she’d simply revert to silence.

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So I put that Camera down.

That was then and this is now. Gia has blossomed and found confidence in her words. She finally feels understood. And though she’s still a bit shy when the camera goes up, she embraces it.

I don’t take progress videos – I take Gia videos, and I’m sharing one with you today.

I’m sure many of you understood most, if not all of what she said. This is a milestone that every apraxia parent dreams of, and I’m grateful for it. But don’t let this video fool you.

As an outsider looking in, you may see a normal little girl with a speech delay – a little girl who’s a little behind. But lying underneath is a severe and complicated speech disorder. Beneath the surface is a daily fight for a daily function.

If you had to describe apraxia in two words, it would be – ‘unpredictable inconsistency’.

Now bare with me while I break this video down in therapy terms…

Question: “Gia, how old are you?”

Answer: “Four”

You’ll notice her initial answer is “bour”.

The /f/ sound has been particularly difficult for Gia. She has always replaced it with a /p/ or /b/ sound. It all depends on the word. Is the /f/ sound at the beginning or the end of the word? What sound comes after the /f/? What sound comes before the /f/? Where in the sentence is the word that has the /f/?

Am I giving you a headache?

It doesn’t make sense. There’s no rhyme or reason to any of it. This my friends…is apraxia, and this is why it’s so difficult to treat.

When she first began working on the /f/, her therapist would have to say, “bite sound”, and Gia would bite her top teeth down on her bottom lip, while using the Speech-EZ hand cue, and watching her therapist do it all at the same time. In other words – she had to hear it, see it and feel it (multi-sensory method), in order to correctly produce the sound. This is considered a ‘full prompting’.

As you saw in the video, Gia’s /f/ has graduated to ‘minimal prompting’ (this took months). All I had to do was remind her little brain about that sound it tends to forget, and she corrected herself without even looking my way.

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Question: “When is your birthday?”

Answer: “June 9th”

Let’s start with “June”.

The /j/ sound is one of the most difficult for Gia, and although it wasn’t articulated perfectly, she actually produced it pretty well here. But when she says her own name, which is also a /j/ sound, she requires ‘full prompting’ to produce it correctly. It’s been a year and a half and she still uses the short /g/ sound to say her name.

Again, it all depends on the word.

Moving on to, “9th”.

Did you notice she made an /f/ sound to replace the /th/? But just before that she needed to be prompted to use her /f/. Fascinating, right? That’s apraxia. You never know what sound will drop, when and why.

Question: “What do you want for your birthday?”

Answer: “Spider-Man, Power Rangers, Spider-Man, Hat Elsa, Backpack Elsa”

So Gia.

Starting with, “Hat Elsa, Backpack Elsa”.

This is a sequencing issue, and can be quite common in apraxic children. Sentences may get jumbled up and words may come out in the incorrect order. When she does this I simply repeat back what she said, but in the correct order (modeling).

Since taking this video just a few weeks ago, Gia has started consistently saying, “Elsa hat, backpack Elsa”. So her brain has corrected one but not the other. Why? Don’t know! Ask apraxia!

Lastly, “Spider-Man, Power Rangers, Spider-Man”

Notice Gia drops her /s/ sound in ‘Spider-Man’ (both of them), and goes straight to the /p/. But she uses her /s/ successfully in ‘Power Rangers’ and ‘Elsa’. Well hello there, apraxia!

It’s not the /s/ sound that is difficult for Gia, but the /sp/ sound. This is called a ‘consonant blend’, and takes a lot of motor planning – too much for many apraxia kids. So in this example, Gia’s fallback is to drop a sound that she has otherwise mastered, the /s/.

In the middle of Gia listing off her birthday wishes I asked, “What kind of Spider-Man?”. She sort of glossed over my question and continued on with her requests. She does this regularly.

If her brain is already busy planning, sequencing and coordinating the thoughts she’s trying to express, me jumping in and asking her to plan, sequence and coordinate another thought is pretty much not an option. Not yet.

If you watch the video back, notice the effort that goes into each word. They don’t flow from her mouth. You can see her concentrating. She has to think hard about what she says and how she says it. Her speech is slow and deliberate. Her answers are short and to the point. She doesn’t go in to great detail – she knows she’d lose success if she did.

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To sum up…

I’m glad you got to meet Gia – the little girl who’s changed me in so many ways, who’s taught me so many lessons.

But if you’ve met one child with apraxia…you’ve met one child with apraxia. It’s a spectrum, much like autism. The severity that some of these children and their parents face is heart wrenching. There are some that will never be verbal communicators.

This video gave me an opportunity to describe just a few of the classic characteristics of apraxia. But in reality, this is really just a glimpse.

In order to give people a truly accurate look in to Gia’s speech, I would have to follow her around all day with the camera. You’d hear words fall apart the longer she spoke. You’d listen to mumbling and gibberish when she just can’t find the words. You’d see heightened frustrations and find a sea of ‘unpredictable inconsistencies’.

But the reality of apraxia wouldn’t quite kick in, until you watched Gia talking to a “typical” two or three year old – speaking in sentences…so effortlessly.

I’m not gonna lie, It’s a painful reminder of what it was supposed to be, and a difficult truth to face.

But this is Gia.

This is what she’s saying.

This IS what it was supposed to be.

Mom knows best

by Kelly, Contributing Writer

Let me start by giving a huge shout out to Nathan’s speech therapist and his current occupational therapists, who are nothing short of amazing women. They are kind, understanding, and I truly feel they have Nathan’s best interest at heart.

As he embarks on Kindergarten in the Fall, I’m looking ahead to the future and what it will bring for Nathan. I’m left wondering – how will we possibly squeeze in seven therapy appointments a week into his new school schedule? How exhausted will he be?

With these questions in mind, I knew I had to start making adjustments in his current schedule so he was ready to go in the Fall.

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I placed Nathan on a wait list at two different clinics that are closer to his school. The one we go to now is 45 minutes away. In addition to the drive, we need a Friday afternoon spot and their office closes before we could even get there.

Finding time for all of Nathan’s therapy, along with school and extra-curricular activities, feels like a real life version of Tetris!

Nathan has been in occupational therapy since he was eight months old. It’s definitely been a long journey of trial and error. Up until this year, he hadn’t made any progress in regards to his fine motor skills, and I firmly believe it’s due to the approach that had previously been taken – a sensory approach.

I understand the importance of sensory integration in a child’s development. I have quite a few friends with kiddos on the spectrum and I know that sensory activities in OT are crucial. Nathan has just never fit the bill for a child with sensory issues.

He has never had a public meltdown because it was too loud, never had a tactile aversion to anything, never chewed on non-food items, or anything else that would hinder his daily life activities.

So why was my child being swung, playing in a ball pit and wearing a sensory vest? I couldn’t understand. But if they thought hanging him upside down would help, I’d let them do it.

So he did this every week.

There isn’t one thing I could say changed about Nathan during this time. After months of treatment, he made zero progress in his fine motor skills, which is what he needed most.

So I began to ask myself – will my child ever learn to write his name? Dress himself? Feed himself?

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But today I have HOPE!

The therapist that has been seeing Nathan since last summer has given me that hope.

She listened to me and my concerns, and did what she truly thought could help Nathan. Instead of working from a sensory perspective, he works on specific motor tasks. He sits, nicely, might i add, for 45 minutes working on various activities. He works on cutting, buttons, puzzles, hand writing etc etc.

While Nathan is still behind, he has made tremendous progress in this last year. He went from drawing a simple line, to now tracing his letters! He is also able to put on his shirt and even self feed!

Watching him accomplish these tasks and goals, feels like I’m watching a real life miracle happen. His determination along with his therapist’s help – this boy is moving mountains.

With all of this in mind, I knew for certain we had to continue the same approach when looking for a new OT.

After a few months on the wait list, we finally got an appointment at a therapy office we had previously gone to that is not far from his school. The only reason we didn’t still see an OT there was because ours had left and they hadn’t replaced her.

We went in for our very first appointment and I could tell Nathan was pretty stoked to be back at this office. Even after almost a year, he still remembered where they kept their stickers :).

We met our new OT whom seemed a little less friendly, but I always like to give everyone the benefit of the doubt. I figured it was Friday and she was ready for the weekend.

So I kindly explained to her that I would like to keep Nathan’s goals and working environment the same. I explained how the sensory approach used in the past hadn’t helped him, but that focusing on the specific motor skill did.

This apparently didn’t sit well with her. A few days later I got a call from the supervisor of the clinic telling me it wasn’t a good fit. The therapist felt I was too particular about how Nathan should be treated.

I was completely in shock. Nathan has had over ten therapists throughout his journey, and never once had I encountered something like this. Up until this point, every therapist we had met always wanted to help my sweet boy reach his full potential.

This therapist was brand new to the clinic and apparently couldn’t handle a situation that didn’t fit her agenda. Instead of expanding her knowledge and experience, she chose to punish my son over a few SIMPLE requests. Just so sad.

I had to remind myself that in the grand scheme of things, it’s better that Nathan not work with an inexperienced and closed-minded therapist. I voiced what was best for him and what has worked the most to help him achieve his goals. I make no apologies for that.

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He still doesn’t have a spot for his Fall schedule, but I’m working on it. I won’t stop working on it either.

I won’t stop fighting for him.

I won’t stop being his voice.

What Would Brennan Say?

“Mom, who is that in the picture?”

“That Gia…is a very special little boy.”

“Special? Oh really? What’s his name?”

“His name is Brennan The Brave!”

“Brennan The Brave? Is he a superhero?!”

“Actually…he is a superhero, Gia.”

“Oh wow! Can I meet him? Can he be my friend?”

“Ya know, Gia…I have a feeling that we’ll all meet Brennan someday.”

 

I’d like to introduce you to that very special little boy…

His name is Brennan Stringer.

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Better known as ‘Brennan The Brave’.

I went to high school with Brennan’s parents, Royce and Holly. At our 10 year class reunion, we spoke about their plans for a second pregnancy. They had a single child at the time, Karson, and like many new parents, were unsure of the right time to take that next step. So my husband and I wished them luck on the eventual expansion of their family, and said our goodbyes. We haven’t seen them since.

Baby Brennan was born about a year later.

Now imagine for a moment…

Imagine being told that your once, seemingly healthy baby would soon deteriorate before your eyes. The few skills they had would regress. Their development would come to an abrupt end. They would lose all function of their brain and body. The light at the end of the tunnel did not exist.

This was the news that Royce and Holly would learn of their second born son. On September 24th, 2013, it became official – Brennan had Infantile Tay-Sachs Disease – a rare and incurable genetic disease.

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I remember the day I read the news about Brennan. I cried tears of disbelief. I ran to my husband, Jeff, pleading with him, “How could this happen?”, “These are good people!”, “It’s just not fair!”.

Jeff held back tears of his own. He remembered that nice couple he met at my class reunion, and he remembered them fondly. He couldn’t wrap his mind around the news himself.

As a parent, you can’t help but trade places with them – just for a moment – just for a glimpse in to the unimaginable. I immediately wanted to trade back.

We gave our kids an extra kiss that night and thanked God for their health.

It was about a year later that we learned of Gia’s apraxia. I cried a similar plea, “Why did this happen to me?”, “I’m a good person!”, “This just isn’t fair!”.

It wasn’t long before the weight of Gia’s diagnosis would lift from my chest. I came to a place of acceptance. It was a comfortable place to be. But as time went on, I realized – I was given this life for a reason, and it was becoming impossible to ignore. So I went from accepting it to embracing it.

I just knew…Gia was a gift. God had a plan for us. He trusted us with his plan. He chose us to be Gia’s parents.

I can not relate to Royce and Holly. There are very few who can. But having a child with special needs gave me a new perspective on life in the Stringer home. I finally understood why this happened to these good people. It made it easier to trade places with them.

There are only 50 cases of Tay Sachs in the United States, Brennan being the only child in Arizona with the disease. With such inconceivable odds, how could this be a mistake? It wasn’t. Royce and Holly were given the incredible responsibility of caring for this beautiful boy…and they were embracing it.

I just knew…Brennan was a gift. God had a plan for them. He trusted them with his plan. He chose them to be Brennan’s parents.

I can’t think of anything more special.

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On March 4th, 2016, God decided he was ready for his very special boy. At just 3 1/2 years old, ‘Brennan The Brave’ took his last breath.

He took a lot of hearts with him.

I never met Brennan, but somehow…I knew him.

That brave little boy helped me through some very difficult times. He gave me strength when I needed it most. When I was feeling tired of the uphill climb of apraxia – he showed me that you never give up. When Gia’s progress just wasn’t fast enough – he showed me how to live for today. When life felt like it was just too hard – he showed me how to count my blessings.

Because of Brennan, I hug my kids harder, hold them closer and love them louder.

He was a gift to more than just his parents. He was a gift to all who knew him and to all who followed his story. He left a mark on this world that can never be erased.

I am forever grateful to Royce and Holly, for letting me and so many others into their lives. They took us on a journey filled with hope, dedication, perseverance and faith. Through their devotion to Brennan, they demonstrated the very meaning of unconditional love. Their resilience through it all inspires me everyday.

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Even so…no parent should ever have to lose a child. I only hope they find peace in all of the lives that they’ve touched with their story.

Tay-Sachs denied Brennan and his family of so much – including the joys of speech. Just before Brennan’s disease took over, he spoke one of the only words his parents would ever hear him say, “Ma Ma”. But there was so much more in there. I just know there was.

As an apraxia mom with an apraxia blog, I can’t help but ask myself…

What would Brennan Say?


Please take this opportunity to educate yourself and others.

Click on the links below to learn more about Tay-Sach Disease and the Stringer family.
–  Learn more about Tay-Sachs Disease –
–  Stringer family Tay-Sachs awareness video –
–  Donate to the Stringer family
–  The Daily Courier article –

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.

Healing From The Inside Out

Gia has always had health issues. Nothing serious or life-threatening, just annoying little pests that made her uncomfortable and made us frustrated.

It all started with a harmless case of cradle cap. Before the scaly patches of skin could make their official exit, the eczema developed. Although not cute to look at, these were common medical conditions that gave me no cause for worry. The solution? Steroid creams!

I was always fighting diaper rashes with Gia. Again, this is common, but many of her diaper rashes turned in to yeast infections. ITCH AND OUCH! They were awful, and frankly, traumatizing. The solution? More steroid creams!

So here I was with my pink, patchy, dry, scaly, itchy, burning, fungus-filled and perfect little angel baby.

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If you click the picture you’ll see Gia’s cradle cap and rosy face.

Soon after she turned one, Gia took her first bite of a peanut butter and jelly sandwich. Within minutes, her mouth was surrounded by hives. My stomach dropped. I cried. You have to be kidding me!

Gia went on to test positive for a significant allergy to all nuts as well as eggs. She showed a mild allergy to tomatoes, a slight intolerance to soy, and a little sensitivity to lactose. Our pediatrician advised that we completely avoid nuts and eggs, but welcomed us to feed her tomatoes, soy and lactose as long as they didn’t seem to cause her discomfort. Every two years we would retest. The solution? Don’t feed her nuts and eggs!

I really felt like Gia just got sick too often. She had frequent, low-grade fevers that were almost always a sign of an ear infection on it’s way. The solution? Ten days worth of antibiotics! Usually only finishing seven!

So now here I was with my allergic, intolerant, sensitive, infection-filled and perfect little angel baby.

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Gia broke out slightly anytime food sat on her chest.

Sure, these health issues added an additional layer of stress to raising Gia, but I never thought to ask myself why it was all happening. It never even occurred to me. I was too busy to care about the “why”, I just wanted her to feel better.

Today, the “why” is all I can think about.

My revelation came over months of hearing apraxia stories filled with sensory issues, coordination problems, low muscle tone, eczema, food allergies/intolerances, GI issues etc. These are patterns that shouldn’t be ignored, and it was these patterns that prompted my reflection on Gia’s life.

I finally started looking at Gia as a whole person, not just Gia with a speech disorder. I became convinced that her developmental, emotional and physical state were symptoms of a much bigger problem; a problem that started long ago. She is missing a sense of balance and well-being, that she really never had.

I spent years pumping Gia’s little body full of steroids and antibiotics, only to come back to the same exact state it was in before. During her third year of life, I had lost all control of Gia’s symptoms both internally and externally. She looked unhappy and uncomfortable.

There is a serious barrier up between Gia and her fullest potential as a human being, that goes far deeper than our SLP’s and OT’s can dig.

This new mindset is what brought me to homeopathy.

Homeopathy is a therapeutic system of medicine that is based on the principle of the Law of Similars or “Like Cures Like”. The law of similars states that the same substance that produces disease symptoms in a healthy person, when given in concentrated doses, can also cure a sick person with similar symptoms, when given in a very diluted form.

I was drawn to the concept of homeopathy for one reason – it treats all of the symptoms as one, by addressing the CAUSE of those symptoms, not the symptoms themselves. Homeopathy heals from the inside out.

No more bandaids.

So I did my homework and found Dr. Jamie Oskin from Arizona Natural Health Center.

Dr. Oskin is a naturopathic physician who has an expertise in pediatrics. He is nationally recognized for his use of homeopathy to help children overcome developmental disorders.

With a healthy skepticism, I made an appointment.

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Dr. Jamie Oskin, N.D.

I liked Dr. Oskin from the get-go. He was the yin to my yang; the calming confidence to my anxious uncertainty.

Dr. Oskin spent four hours getting to know Gia on a mental, emotional and physical level. Those hours were filled with questions that I never dreamed would have any relevance to her treatment. With every question came further reflection. It forced me to think about my daughter on a much deeper level; like I was living a day in the life of Gia.

We left with a homeopathic remedy and a plan of action.

Three weeks after she took her first remedy, Gia had taken on a new level of communication. With no knowledge of her starting homeopathy, all five of our therapists mentioned Gia’s sudden surge in speech. It was an overnight change, and everyone took notice.

I have some thoughts on this sudden surge of speech.

What we all saw happen with Gia was no coincidence. Her communication improved in very specific ways. These were things her therapists had been working on for months. They were simple goals that Gia couldn’t fully grasp.

Our SLP’s gave Gia all the tools to reach these goals, and Dr. Oskin simply cleared the path for them to finally break through. It was like a volcano boiling over that finally erupted.

There is nothing and never will be anything that can replace speech therapy. Homeopathy is simply working along side our SLP’s, helping Gia take in each session more effectively; it’s clearing a fog that took four years to build up.

Gia has been looking for the door in a pitch black room, and homeopathy turned the light on and said, “There, does that help?”.

Since that little explosion, Gia is back to making a steady uphill climb of progress in her speech and communication. The only difference is, instead of walking up the hill, she’s jogging. She’s always made progress, but never at this pace and consistency.

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Dr. Oskin and Gia after her first follow-up appointment.

Let me back up a bit…

I really don’t believe in coincidences. I’m an, “everything happens for a reason” kinda girl. The day of our first appointment with Dr. Oskin is a perfect example.

We were waiting in the lobby of Arizona Natural Health Center, when I noticed Gia start to look flush, feel warm and act irritable. Sure enough, she started tugging at her ear. I couldn’t believe it. This would be her third ear infection in six weeks. That means another ten days of antibiotics.

My first thought was, “Great! Of all days to get sick, it’s today!” When Dr. Oskin greeted us, I casually warned him of Gia’s symptoms, and he casually responded, “I can help her with that”.

After finding an infection in both ears, Dr. Oskin sent us home with a remedy. Later that same day, my son started holding his ears and screaming in pain. Whatever Gia had, he was catching it. With a little hesitation, I gave him the remedy too.

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I have to admit that this whole remedy for ear infections thing was making me uncomfortable. I was itching to call the pediatrician and get them antibiotics, because that’s all I’ve ever known. You better believe I would have had Gia at the pediatrician a third time for a stronger antibiotic if I hadn’t been in Dr. Oskin’s office that day.

Their infections were gone in less than 48 hours, and have yet to return.

This is just the beginning of our homeopathy story. There’s so much more to share because there’s so much more to Gia.

I would encourage everyone to take a moment to look at your child – what do you see?

 

Disclaimer: This is based solely off of my personal experience with 
homeopathy. I am in no way telling anyone that they would have the 
same experience. I am not receiving anything in return for this post.