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.

 

 

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 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 🙂