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 see 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.

Where we are

One of my resolutions on the 1st (I wrote a long list this year) was to blog more often. I’m hoping we can all pretend that the first two weeks of the new year without a post never even happened and we can start working on this resolution from here on out, OK?

One of the reasons we haven’t had a blog post is because we’ve been so busy (Wendy’s photography business and Mary Kay team, visiting family, meetings with Zack’s school and much more). The other reason why we haven’t had a blog post is because among all of that craziness, I’m working really, really hard to disconnect more often and for longer periods of time and just be living in the quiet moment of Now. So, the kids and I have been playing pretend games together and Scott and I have enjoyed time together with some new favorite shows and even a game or two. I sometimes get so stuck on what I should be doing; who I should be helping; what I should be planning… that I forget about me and about Scott, Zack and Addie. No more of that nonsense. It’s all about balance.

So here we are.

I woke up a few days ago and just felt like we were on the cusp of something huge; something much greater than just a new year or a new month. We have spent so much of the past year transitioning from one home to another, one job to another, one lifestyle to another, that I finally feel as though we are ready to just live it now. To just be where we are and not where we are going or where we were.

Life is such an amazing adventure. I just want to soak up every minute of my journey.

Zack and Addie are the most wonderful little humans I’ve ever known. I might be biased.

Addie is so quick and witty. She greeted me at 7 a.m. today by shouting “Open the door, please, it’s good morning!” And when I opened the door, she reached out with her hand, shook mine and said, “Glad to meet you, Momma.”

She just continuously makes me laugh. More than four months after moving in to our home, she still asks her grandparents and random strangers if they want to come see her new room.

Her imagination is insane. She jumps from princesses in peril to babies and towers and hammering things that need fixed all within about 20 minutes. And there is so much drama! She knows how to work a pouty lip and lower her eyes and glance up at you through her dark eyelashes. You can’t not smile, I guarantee it.

We had some trouble with her stubbornness and strong disposition, but now we are getting a better handle on how to make her want to be a good girl instead of just going into discipline-the-bad-girl mode. She is relatively quick to clean up her toys, many times without me even asking, and she’s even more tolerant about sharing and brother hugs.

I love her quiet moments so very much.

The other day, I think we both wanted and needed some cuddly time together, so I suggested we watch a show under the blankets together while Zack was at school. I suggested princess movies and Bubble Guppies and even Dr. Seuss.

“No, momma,” She said. “I want to watch Momma’s show.”

I didn’t think it would last, but I gave it a try and flipped on the last 20 minutes of a terribly cheesy movie I watch on repeat whenever I get 20 minutes to catch my breath or eat a snack. She watched it all with me and held my hand tight. Near the end, she pointed to the lead female character, in a slightly sad scene, and told me that it was Momma.

But then quickly, she turned to look at me, put my face in her hands and said, “But Momma is happy because Addie makes Momma happy.”

She’s correct.

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And the Z-Man. Oh, how he is growing in so many ways in these recent weeks.

We are moving forward with getting him an aide for school and at home (about 14 hours/week total to start) and as long as the Commonwealth approves it, he’ll have someone by his side within the next two weeks. HIs most recent IEP meeting to discuss our plan for him for the next year, went well, all things considered.

It’s never easy to read a booklet on the most minute details of your firstborn. It’s never an enjoyable experience to hear things like “lifetime of needing special assistance” and “safety issues to himself” or words like “delay” and “lacking.” It doesn’t matter that we’ve done these types of meetings numerous times. It doesn’t matter that we are always grateful for them and for the handful of people in the room who care so much about Zack that it’s almost like he’s theirs, too. For me, it’s always like a rehashing of his Down Syndrome diagnosis. I grieve for a day or two, and then, we’re all OK. And I begin moving a thousand miles an hour to work on new ideas and areas of concentration. We’re asking a lot of “wh” questions (What color is that? Where is this?) to work on speech and we’ve got a lot of work to do to keep him attending to tasks without disrupting others or posing a safety concern to himself. But we have plans and we have dreams and they are all big and we are so excited.

Zack’s teacher spoke of his potential and she did it in such a proud way that I think “potential” is my current favorite word. Isn’t it exhilarating what power ‘potential’ has? You can do amazing things and be amazing. You can work to reach your potential because no one’s potential is just handed to them. Potential is a beautiful thing.

Zack has a good friend at school named Maggie. She’s a very quiet, shy girl who doesn’t typically like to be touched or disrupted, especially if she’s feeling a little anxiety. But for whatever reason, Zack can approach Maggie in any situation and hug her or hold her hand and she always lets him. This morning, it was just Zack and Maggie on the van to school. When we opened the door and he saw her, Zack just smiled and kept saying her name over and over like a song. Before I closed the door, I saw they were already holding hands.

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So here’s to more blogs. And to potential. And to holding hands and making people happy. Because that’s right where we are now.

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.

3 hours and 47 minutes

Addie went to “school” for the first time today. 

For this little almost-two-year-old, it means she went to the same church her brother does three times a week, stomped down the stairs wearing her little dinosaur backpack and marched down the hall from Zack to a little toddler room with blocks and a fish tank and six boys and girls that had no idea what they were in for with this little pink blur. 

Haters be hatin’ because when you say she’s too young and it’s not necessary and it’s whatever, well let me tell you what. I didn’t see a suffering baby girl screaming to be released from the pain and torture of (GASP) playtime with kids her age; nay, I opened up a door and saw a little girl lying down nicely on her mat, a smile creeping over her face as she showed me drawings, all with purple crayon, that she made for Momma. 

For one day a week, she doesn’t have to remain in the car watching Princess Sofia while I take her brother into this mystical place of mystery. For one day a week, she gets a break from Momma, and yes, oh yes, Momma gets a break, too. 

From the time I tiptoed sneakily out the door while she knocked on poor Fishy’s tank to the moment those blue eyes gazed up at me during Quiet Time, we had three hours and 47 minutes. 

 

I went grocery shopping. (No squirming or singing songs about squeaky wheels or condiments)

I put said groceries away. (All at one time)

I talked to my stepmother on the phone. 

I had a second cup of coffee (in one sitting).

I ordered food for Addie’s birthday party. 

I listened to (rap) music REALLY loud while driving by myself with all four windows down because I could.

I made playdates. 

I finalized Mothers Day items.

I worked on some Mary Kay things. 

Organized upcoming photo shoots.

I sat on a step outside, coffee in one hand, pretending to be planning some garden plants, but really and truly, I was planning (and, in a way, not planning at all) the potential for these Monday mornings. I could do nothing. I could do many things. I could do everything. That’s the thing. For four freakin’ hours a week, I have no said plans and no kiddos. 

I truly believe that these four hours will help me appreciate the good bad and ugly of the other 164 hours I’m focused on the kids and/or other people. 

But what these four hours mean to Addie are even greater. These could be her first best friends; her first lessons, her next burst of vocabulary or skills. 

So for three hours and 47 minutes, we all regrouped. 

We joined forces, marched out of that church, backpacks worn and steps being counted. Zack yelled “white car!” as he always does when we get to a parking lot and he and Addie proceeded to “gab” to one another for no less than five straight minutes. And we didn’t make it five miles down the road in that time, or even two miles, because there was one very happy Momma sitting in the front seat watching the interaction from a rearview mirror. She had many accessories — a headband, some sunglasses, and a badge of immense pride, hanging right there next to her heart on her Momma Sleeve. 

All because of three hours and 47 minutes.