Gia has a brother

Gia has a brother…his name is Nicholas.

12362671_609787462493490_493777291199457965_o

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.”

413834_104015089737399_2056068987_o

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.

1415852382112

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 Nathan Say? – Meet Kelly

by Kelly, Contributing Writer

Our beginning has been nothing short of rough. I was induced with Nathan one week after he was due. He appeared to be a healthy 7.12 pound baby. Unlike most other babies born with Cerebral Palsy, he wasn’t premature nor did he require any oxygen after birth.

Within an hour of being born, my gut told me something was wrong with Nathan. He would latch while nursing, but within seconds he would pull off and scream. After nursing my first two kids, I knew what I was doing and just felt something wasn’t right. This cycle continued for over 12 hours. I repeatedly told the nurses, he won’t stop crying there must be something wrong.

A year later, after I requested all of his hospital records, I would learn that those nurses were making notes in my chart that I was making no attempt to comfort him. I sure would love to give those nurses a piece of my mind. Had they really listened to me instead of making judgments, Nathan might not have suffered so much in his first year of life. After exactly 24 hours in the hospital, I asked to please leave as I felt there was nobody there helping me anyway.

Those first weeks were harsh and scary. The nursing problems continued. Nathan developed what the doctor called breastfeeding jaundice. He was so yellow; I have a hard time looking at the pictures of him like that. After several appointments and telling the pediatrician my concerns, he said Nathan was failing to thrive.

We took him in for weekly weight checks until he started to put on more weight. Nathan spent most of his days crying for hours. I was told by the doctor it was colic. His exact words were, “once he is 3 months old he will be perfect”. Again, the words I’d like to tell him now are very colorful!

After 3 months of doing everything possible to get Nathan to nurse, I quit. This broke my heart, as I knew how much he needed it. He took to the bottle much easier than he did nursing. We thought our problems were behind us, they weren’t.

Nathan developed extreme reflux. At about six months old, I decided to start him on solid foods. There seemed to be something off when I would feed him. Every time I put the spoon in his mouth he would also shove his hands in his mouth. While this is somewhat typical, he did it excessively. It was more than what was considered normal. So finally at 8 months old, Nathan started Occupational Therapy for feeding.

Everyone from friends, family, and doctors were telling me he will be fine. I honestly felt deep down inside, there was really something wrong. Hearing everyone’s reassurance just made me feel like I was crazy.

250423_103315176428814_3168410_n

While Nathan did sit up at the right age, he wasnt hitting any other major milestones. At 10 months old, he started physical therapy in addition to occupational therapy for issues outside of feeding. By the time Nathan was 1 year-old, he wasn’t crawling or walking. To me that justified, there was in fact something seriously wrong.

Nathan never really babbled, nor did he ever put things in his mouth as all babies do. Still, everyone in my life said he was just a “late bloomer” and he’ll catch up. As months passed, he didn’t. In addition, his head size began to fall off the charts. Head size says a lot about a child. Too big or too small is sometimes a red flag for concern.

In March of 2012, Nathan was sedated and given an MRI. Weeks later, his neurologist told me over the phone, that Nathan had a slightly enlarged right ventricle and decreased white matter. He then proceeded to tell me that this would fall under the umbrella term of Cerebral Palsy. Anytime there is an abnormality of the brain it can be classified as such.

There it was, the explanation I thought all this time had existed. As I researched the Internet for Cerebral Palsy I came to the realization that Nathan wasn’t the typical CP case. By this time he was already walking and his muscles didn’t seem to be that weak. To this day Nathan doesn’t appear to be a typical CP kid, as he has never been impacted by a muscle related issue. So I guess that’s one win. I did gladly accept the diagnosis, as this new label opened the door for him to receive more services.

After a year of weekly therapies, it was clear Nathan wasn’t making any improvement in speech. During a recheck with his feeding therapist, she mentioned Apraxia and asked me if anyone had ever mentioned that. Back to the researching I went. When I read the description of Childhood Apraxia of Speech, I knew this was what Nathan had.

The couple words that Nathan had, he would lose for months at time. That symptom of losing words really stuck out to me. The writing was on the wall; it wasn’t the Cerebral Palsy stopping him from talking, it was the Apraxia.

I went on to find the most trained and seasoned SLP for Apraxia, that was somewhat close to our area. We’ve been seeing her four times a week for two years now. Nathan is one of the most severe cases she has ever treated.

Even with years of treatment, Nathan still can’t talk. As he has hit the age of 5, the chance of him ever having speech as his primary form of communication is quickly dwindling. Every day is battle. Im sharing Nathan’s story because I want to let parents of other little warriors know that they aren’t alone. Not everyone’s fight can be won but we won’t give up trying.

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.

IMG_0999

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


IMG_0101
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

Gia’s First Progress Report

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

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

Differently Gifted

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

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

Apraxia?! What’s that?

To say that Gia was a surprise, would be an understatement! After needing fertility treatments to have my son, Nicholas, I found myself pregnant AGAIN, when he was three months old. Ready or not, Gia came into our lives just 9 months later. I was terrified at the thought of bringing home a second baby, but Gia made it not so terrifying. She was your typical baby, as long as her tummy was full, and her diaper was changed, she was happy! She slept through the night at 8 weeks-old, smiled like it was her job, and let her brother be the star that he so desperately wanted to be. In the first year of Gia’s life, she met all of the standard milestones on time; she rolled over at 4 months, sat on her own at 6 months, crawled at 9 months, and walked at 12 months. She babbled constantly, but had yet to say a real word by her first birthday. I wasn’t concerned, and neither was our pediatrician.

Gia’s 18-month checkup came, and still no words to speak of, just a lot of gibberish. My son was a late-talker, so I didn’t think much of it. I was looking at a healthy, normal little baby, and I figured that the pediatrician would see that too; I was wrong. She very bluntly said to me, “I’m going to flag her in the computer for Autism, because speech delay can be an early sign.” Two thoughts went through my head: one, “Oh my god, my daughter has Autism!”, and two, “What a B****! My daughter does not have Autism!” From that day, until Gia turned 2 years-old,  I found myself studying everything my daughter did. She would do something that I thought was “weird”, and I would run and google it; It was insane! I felt like my brain had been poisoned with this toxic information that I just wanted to go away. I stopped enjoying this happy, and carefree little girl in front of me, and became consumed with what everything meant. Continue reading