The FYI and that tree

Kindergarten registration, perhaps particularly for a child with a disability or handicap, is not for the weak at heart. I hesitated writing this post because I know this has been a redundant topic and I fear that it comes across as only negativity regarding Zack and our journey. Not my intention at all.

It was supposed to be 15 minutes of a quick screening, I was told. We were excited to finally have one of us┬ásee the inside of the “home school” for the kids (where Zack will attend is still up in the air). After our issue with the registrar’s office last month, I found my anxiety level in the last few days rising steadily. Still, I kept my chin up and my mind open and drove the mile and a half to the large brick building.

We took a photo out front and marched up the front steps, all three of us counting together. We were greeted in a lobby filled with Cat in the Hat cut-outs and smiling children.

And then we were given a packet, instructions for a six-part circuit in the gymnasium and, right on cue, Zack ran down the hallway and wouldn’t come back to me, smack in the middle of a handshake with the principal. The first stop after scooping him up and talking about danger and listening, was simple — letters and colors and shapes — the table where he’d impress and prove wrong the challengers.

He didn’t speak a single word. Not his favorite color or the first letter in his name. A Kindergarten teacher at the school shrugged it off and told me it was no big deal and sent us to the next station. He wouldn’t even sit down at the table where all he had to do was match letters and name the item in a picture. At the nurse’s station, a middle-aged woman asked questions about immunizations and I don’t know if she didn’t make eye contact because I was already holding back tears or if the tears came because I felt her give up.

At the top of Zack’s checklist, an hour later and now with “yes”s and “no”s alike, was a tiny yellow Post-It. “FYI” in large block letters. And the name of the LifeSkills class in another school miles away. At least they were kind enough to add a question mark, but by now, visions of a dismal, windowless room in the basement were already popping into my mind. The other school, the guidance counselor said as we left, ink still drying on our packet, “could be lovely, too.”

On the way out, Zack counted to 12 on his own and pointed to my Jeep and said “Momma’s white car.” I cried in that parking lot while the kids ate their gifted lollipops and attached stickers to their shirts.

I hated Down Syndrome more than ever before in that parking space under a flowering tree. I never even thought Kindergarden would be a blip on our radar this year. And now, the same strangers who assured us that ZMan could thrive in an elementary school, maybe even a regular classroom, go ahead and go through the process, what’s the worst that could happen? — Those strangers already counted him out or counted on this. I mean, FYI.

It’s not the recommendation that he does X or Y; it’s the getting there wondering if you’ve done enough.

The worst that could happen? This. This parking space and the phone call to my husband. The helplessness and the hopelessness. The reminder that everything is a battle and some battles can’t be absorbed by a lollipop and his Momma.

My friend is wise and calming and she told me today to “try not to borrow trouble.”

So I lay my worries on the ground and cover them up and plant something beautiful in their place. We will cherish and nurture the good that comes out of this mound of dirt and we will see where it takes us in these next few months. And we will grow. Perhaps into a flowering tree to harbor fears and shelter worries.

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Reminder days and promises

When Zack was seven days old, I held a chromosome test in my shaking hand. Two things happened.
Firstly, I wished so fervently that I had paid better attention in my science courses.
Secondly, I made a promise.

My promise was to this baby boy I barely knew at the time. I said “this will all be OK” to him, but really it was to me. I swore to him endless days of both of us working hard and pushing each other and making sure we left no stone unturned; that if it was the last and only thing I accomplished in my life, he would have years of independence and normalcy.

And today, in the simplest of phone calls from his teacher at school, I felt simultaneously like I was still keeping that promise and still failing him all at once.

Two and a half weeks ago, when we observed Zack in his school for a Halloween event, we saw firsthand and heard from his teacher that he needed a good amount of one-on-one attention from the staff during activities like circle time, reading, lessons, crafts. It saddened me a bit that day to see how the teachers took turns sitting beside him for a snack and a drink and a few minutes of Dora. I told myself to shake off that sadness another time and smile because my Cookie Monster was smiling, too.

But today, Miss Joanie said she couldn’t wait until the next event or observation or IEP meeting or evaluation. That Zack’s need for that one-on-one attention was so demanding and his constant running away from the activities or being distracted from the task at hand was not only draining their manpower from other students but most definitely hampering what she called his very awesome potential.

“He’s very, very smart,” she told me to fill the silence when she couldn’t hear me nodding politely and fighting a tear or two. “He is an incredible child. We all want what’s best for him.”

She’s sending paperwork home tomorrow all about TSS’s — basically an aide who will be by Zack’s side nonstop during school… this month, or this year, if we’re lucky, the teacher tells me, into Kindergarden and beyond.

I can’t say how much I love Zack’s school, and his teacher. How I feel like we are all on the same page, all on Team Zack.

You’re going to tell me the same thing my Dad told me this afternoon when I called him in tears.

Me: “I feel like I have failed him in some way.” (My dad tells me I’m stupid for thinking that.)
Me: “This is the furthest thing possible from an independent life.” (This is probably a really good thing, my dad assures me.)
Me: “I’m so strong and I’m so positive and I will do whatever I can for him if it’s best for him. Maybe I should have done more. I never thought he’d need such hands-on, in-your-face help.” (My dad half-laughs. It’s not what you want, he reminds me. It’s not about you, it’s not what’s easy. Just keep doing one day at a time. His future is going to be great.)

Tomorrow, I will take a list out of his backpack and instantly make phone calls and set up a series of interviews and another round of evaluations. And then someone will be by his side in his classroom, keeping him in his seat and putting pencils in his hand. Grabbing his attention, sometimes his hand. Tomorrow will suck.

Today sucks more.
Because today is like the day I held that chromosome test. I have already Google’d a thousand things about aides and TSS’s and yet another part of a future I don’t want for my child creeps into my head. Research and educating and an e-mail to family (er, please accept this blog entry?).

And then we inhale deeply and try to sleep today away. And make sure to write a note of gratitude to Miss Joanie in the morning. And turn around to the positive side and likely move on from it all before some of you even read this. We will appreciate extra help and extra possibilities. We will probably love him or her as much as we loved his Early Intervention therapists, some of whom we still FaceBook message and e-mail on a regular basis. Just like his first teachers. They’ve all been on Team Zack. If you’re not on our team, get off the freakin’ field.

I know how lucky I am and we are and how great Zack is doing. Vocabulary continues to grow by the day. Conversations happen and “I love you”s repeated. Eating difficult food with utensils on his own. Learning how to use the potty. He’s so, so smart.

It’s just that today, I need to let myself be angry and upset and just get through this in-my-face reminder. I have to again grieve a lost baby that we had planned for five years ago and reacquaint myself again with this beautiful boy who now rocks every minute of my life. Because every now and then, I forget that this is not what my other Mommy friends are doing. But I know also that there are a million Mommas with worse concerns and scarier moments.

Remind me that John Lennon said “Life is what happens when you’re busy making other plans,” I dare you. I’ve already listened to six Beatles songs today.

Every now and then, life and its’ plans stare me in the face. We salute our glasses, nod our heads, sing some John Lennon and we fight over who gets to hug Zack first and tighter and longer.

I will always fight harder. I will always squeeze tighter.
Like I did four years and three months ago. Then, I learned about an extra chromosome.
Today, I open my heart to an extra pair of hands. And am so grateful for my Dad 100 miles away in a restaurant parking lot reminding me of potential.

I will keep my promise, Zack.