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 🙂

Quitting my job

I remember the day it happened, the day I knew. It was Friday, March 20th to be exact. I got off work at 5:00 and headed over to Nick and Gia’s preschool to pick them up for the day. I walked in and did my usual scan of the room, looking for the blonde-haired, blue-eyed children that look nothing like me. Nick and I locked eyes right away, and he greeted me with his typical, melt-my-heart “Hi mom! I missed you so much today! I didn’t pee my pants!”. My typical response followed, “Oh Nicky, I missed you so much today too! I’m so proud of you for not peeing your pants, but you do know that’s pretty normal right?” Now usually by this time Gia is right there with us, giving hugs and kisses, using her own special words to tell me all about the day. She was no where in sight. I took another scan of the room, and called out her name several times. She slowly popped her head up from behind a shelf, and I was shocked at what I saw. She looked like a disaster of complicated emotions. She looked sad, she looked weak, she looked angry, she looked tired, she looked discouraged, and she looked defeated. My eyes welled up as soon as I saw her. There was pain and struggle all over my daughter’s face, and it made my heart hurt. I glanced up at the teachers, looking for some kind of explanation. Before I could ask the inevitable questions of concern, the director approached me with the obvious, “She had a rough day”. Continue reading

Differently Gifted

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

The Apraxia Angels

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

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