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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Normalcy and the foyer

The other day, Zack returned to school after missing an entire week of school due to snowdays and a cold. It marked the EIGHTH week in a ROW that he didn’t go to his Pre-K program all four scheduled days in a week.

We did the best we could do with cabin fever and crafts, coughs and lots of coffee.

But there’s something about rounding that corner, you know? Everyone has their corner. For a tired, exhausted, overwhelmed mom of two cranky and bored kids in a miserably cold winter, that corner was the bus pulling in front of the house Monday morning and a smile creeping across both my face and Zack’s.

Even better than that bus pulling away and the calming sense of routine returning, was its return a few hours later.

Zack was smiling when I opened the door and yelled, “Call Uncle Brick!” which made me laugh so hard. He insisted on walking to the door, not being carried, and wanted to open the mailbox to check for “Momma letters”, too. I was so giddy with happiness. And it was in the high 40s that day, too! Hooray!

Addie was at the front door, blowing raspberries against the glass. Zack met her on the other side and blew drool all over the window, too. (Note to self: You still haven’t cleaned all those prints, oops!)

We opened the door and she squealed a thousand exclamations.

“Zack, you’re home!”

“I’m so glad you’re home!”

“Come into my playroom.”

And then, she grabbed the zipper on his coat, which he had been struggling with, and said, “I help you?”

He smiled and nodded, leaned over and kissed her forehead.

I froze.

The newspaper in my hand, only one boot off.

She pulled the zipper down, he tore the red and black jacket off and threw it across the room. They both laughed. I couldn’t help but giggle, too. And then he wrapped his arms around her.

“Home, Addie.”

Turned to me: “Schnack, Momma, please!” (Typical, haha)

And she returned the hug. A little ten-second bear squeeze. I still only have one boot on.

And she held out her hand, which he grabbed. And they marched into the living room and sat down at the couch together.

I heard Addie ask him if he was a good boy at school and that laughter from my throat made me take the other boot off, grab the backpack and the thrown jacket and walk back into normalcy, happiness and the appreciation of the little things.

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.

Under all that blue fur

My Momma Heart melted a bit again today.

It does this now and then — just lets loose and opens up and all the worrying and holding my breath and doubting myself laughs as the giggles and happy tears and smiley-round-the-mouth wrinkles spew from my heart.

Zack had his Halloween parade this morning at school.
I was hardly expecting it to be a crucial moment in his childhood. In fact, I was just counting it as a plus that the Cookie Monster hat was on his head for a solid ten minutes before school. Progress for a family that learns that sensory issues creep up out of nowhere, especially around a holiday geared towards itchy outfits and overwhelming sounds and feelings. He hopped on the bus and was holding hands with a SpiderMan when I waved good-bye.

So I chugged some coffee while picking up tufts of blue fur on the kitchen floor, scooped up Addie (who the night before had thrown her Elmo head into the garbage, causing Momma to search for an hour last night and some this morning before she just told me where it was. It’s been cleaned and is drying on a ceiling fan.) and off went our family of three (bonus Happy Momma points for Scott getting out of work super early today!) to Zack’s school just a few miles away.

There were dozens of parents and grandparents and siblings spaced along a downhill driveway’s fence on the property, phones out, cameras out, leaning further and further onto the concrete as 10 a.m. neared and most definitely ignoring at least half of what one administrator was saying before the parade.

And then, a commotion that can only come from 30 pre-school-age kiddos in costume attempting a single-file line outside of their building and routine.

Zack was one of the first ones, standing next to another Cookie Monster (doh!) and holding the hands of one of the school’s aides.

The hat was on… SUCCESS!, I thought.

And almost predictable, our quiet, observing boy came closer. One hand was fidgeting with the strap on the hat under his chin. And then, a wipe of the nose (classy, boy!) and you could almost see him pull his shoulders up with a mental pep talk as he trudged along, looking at the crazy cheering adults along his path.

And then he spotted us.
Oh, the smile he had. It was like everything changed. The hand at his face went down. The smile stayed. He was about five feet past us when he turned around, nearly dragging his aide down, and said “Hi, DaDa!” and waved.

The families were gathered by corresponding class outside at the playground (quite the feat when you have a two-year-old sibling antsy to try out the slide) while the students were nestled inside with a Dora episode and a special treat.

When we got inside, Zack was near the front, sitting on a little stool with an aide rubbing his back and helping him with his drink. The hat was off, I noticed, but more than that, I was able to just observe.

He was a bit antsy but stayed in his seat the entire time as the teachers and aides took turns helping him out and talking to him here and there.
He was a good boy, I saw. Happy Momma.
He needed a lot of one-on-one help. Sad Momma.
He’s happy. Happy Momma.
They love him, you can see it. Happy Momma.

We watched for a while and then had the chance to meet two of the aides, who just raved about The Dude (I bet you tell that to all the Halloween Parade parents, I thought) and then, a great conversation with his teacher, Ms. Joanie.

Joanie told us things like “great speech” and “so smart” and “I can tell you have worked so hard” and I had to look away because these tears just welled up inside of my throat and I had to concentrate on the paper cup in my hand and Zack’s soft Cookie Monster fur to keep from falling apart in her arms with “Thank yous” and “you don’t know what this means to us.”

Under all that blue fur is one-third of my family. One-half of my children. 50 percent of the best thing I’ve ever created. Under all that blue fur are so many of my worries and so very many of my smiles. The calm, sweet, huggy boy that makes everyone in a room chin up and cheer up with a single unsolicited smooch.

I stressed the most during our move about finding the right school for Zack. And I have no doubt, after just an hour stolen from their days and days of hard work, that we found the perfect place. He has grown in so many ways just in the seven or so weeks of bus rides and letter show-and-tells and notes on yellow-lined paper back and forth.

If it’s just for that hour or for the rest of today or this week or every time I think about my little Cookie Monster or for the rest of our school year or the rest of our lives, they have given us hope and knowledge and tools and love.

I speak often about “Welcome to Holland” as the greatest analogy for having a child with Down Syndrome. And every now and then, I am so grateful that all the tulips and windmills and Rembrandts came our way. Because under all that blue fur today, is my son, struggling with all of the very real issues any mom of any four-year-old deals with — tantrums and nap times and diapers and not sharing with his sister. And under all that blue fur are the many lessons he has brought to me and the many ways he has made me a better person.

Under all that blue fur today is an incredible love that I wish everyone could experience and understand. It’s the most beautiful thing I’ve ever known.

Tomorrow is the last day of Down Syndrome Awareness Month. But knowledge must always continue. Questions can be sent directly to me or you can visit the pros at http://www.ndss.org, one of the best sources of information out there.

Consider a donation to help The National Down Syndrome Society continue their incredible work for research and advocacy or stop by their website every now and then just to learn a little more.

And I feel the need to say a might thank-you to the many people who love our Zack and our Addie and bring us warmth and support and kindness.

I am so grateful for our little world, currently lined with blue and red tufts of fur. And a heck of a lot of love.

Your first day

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Little Z-Man, you are starting school this week.
It’s just a lil DayCare/Pre-K program we found for you that you’ll attend three days a week for a few hours each day, but it’s a big, big deal.

This is the beginning of your education, which I promise you is one of the most important and precious things you’ll ever be given (in addition to wisdom and street smarts and love and respect and kindness and freedom and strength and so many other things).

From this moment on, you’ll spend the better part of two decades learning things that won’t make sense now but you’ll appreciate in the future (like doing math without a calculator) and things you’ll wish you would have learned (like balancing a checkbook or killing a spider in the best way for your Momma).

From this week on, you’ll make friends you think you’ll keep forever. Most of them will fade away. The ones you work hard at and the ones you fit best wish will remain for years and years and years. They’ll know your every dirty secret (like the time you peed through your Pull-Ups on the first day of school, which I’m just calling now as happening on Wednesday). They’ll probably know more about your sister than your parents will, too, so keep them close and if they get any good dirt, beat up some boys and tell your Momma.

Some of your friendships you’ll lose. But the memories of those friends — the sleepovers, the laughs, the mistakes and the note-passing — these things you will carry with you forever. I still think about some of those moments from 20 years ago when a name pops up on FaceBook now and then. They made me who I am today — their families welcomed me in to their homes and fed me dinners and took me on vacations.

So all I can hope is that you will be brave and make friends. Build block towers together and chase each other outside at recess. I can’t wait until we all make new friends and I sip coffee with a new friend’s Momma while you play together.

Listen to your teachers. Always. I had some strict teachers and some easy ones; I had some kind ones and some mean ones. But they all taught me not just school lessons but life lessons. I had a second-grade teacher who sent me to the office during a lesson on prejudice and racism and discrimination simply because I had blue eyes. I’ll never forget the fear and confusion and sadness, but to this day, I remember Mrs. N and treat everyone I meet as an equal. My fourth-grade teacher came to Grandma’s funeral and gave me a great big hug that let me know she cared. That meant a lot. My sixth-grade teacher embraced my sarcasm but taught me not to ever cross the line. (I’m still working on this one) My sophomore English teacher told me I was a good writer and introduced me to the school newspaper. I’ve been writing almost every day of my life since then in some way. My freshman year of college, a professor made me feel like I was a number, not a person and I made it my goal never to just be a number in a group again but to always stand out as a good person. I hope you always respect and listen to teachers — they are not just adults at school — they are family, they are friends, they are coaches, they are sweet lil ladies in the fruit section of the supermarket.

I don’t know what education will be like for you. For reasons I will never understand but have to embrace, you were given challenges before you were even born. If I could have, I would have waved my magic Mommy wand and made all of your struggles disappear. But we are given obstacles and challenges for a reason. We must make the most of them and learn from them and grow from them. I hope that education pushes you but doesn’t tear you down; I hope people understand your challenges but never limit your possibility and potential. I will never settle than the absolute best for you and I will never, ever let someone tell us that you can’t do something. All of the above goes for your sister, too. You are both full of potential and I am going to make sure you have the brightest, happiest futures I can offer you.

We may have to take different approaches; we may have to take a detour or re-route our path. There are probably not going to be many shortcuts, but I promise you my patience and my help in any way I can give it.

And may the Lord protect anyone who disagrees with that.

So we start on Wednesday with a new backpack. In it will be a change of clothes and some Pull-Ups since you’re a Big Boy and learning to use the potty and it’s not always perfect. There also will be a communication log one of Mommy’s friends who works in Special Education recommended we start. I began with a letter to your teachers telling them thank you and letting them know all about your family and your favorite things. We’ll get little notes back from them talking about what you’re working on and how we can help and if you’ve had a good day or a bad day. We’re developing an IEP for you (Individualized Education Program, where we outline your potential and let your teachers know that you have a disability but you are not defined by that disability). You may even still receive some of your therapies (probably speech for sure, your toughest area currently).

If you get scared or lost for a moment, remember you love music and start yourself a dance party. I’ll be dancing in spirit right there with you, fingers pointing in the air. Or pick up a book and share a story with someone. Do what makes you happy and what makes you comfortable and the rest will come to you.

I am so blessed to be able to take you to your first day of school. We will make it short and sweet and Addie and I will offer you big hugs and kisses and find you a fun activity to start your day. I’ll squeeze Addie a little tighter and kiss her as I put her in the carseat. And I will try hard not to but very likely will bawl my eyes out for a few moments. I promise they will be happy tears because I’m so proud of you and I’m so proud of this huge, awesome support system you’ve had around you to get you ready for this day.

And I will have an extra cup of coffee and go and enjoy time with your little sister and some of Mommy’s friends and their babies. And just a few hours later, I will pick you up and I bet you anything that you’ll look bigger!

We never take anything for granted in life anymore. You have taught us about the many gifts in life. And this Wednesday, with your little “Zachary” backpack over your tiny shoulders, heading inside a building to meet new friends and learn lots of new things, you will give us another gift.

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“Dearest, when you go away
My heart will go, too,
Will be with you all the day,
All the night with you.
Where you are through lonely years,
There my heart will be.
I will guide you past all fears
And bring you back to me.”
(Edna St Vincent Millay, “Song”)