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.

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