Tomorrow Is Too Long to Wait for Inclusion

Macyn’s First Day of First Grade

Macyn
This article was posted with the author’s permission and was originally published on The Lucky Few.

Today Macyn started first grade. Today I walked the three blocks to her school, lingered longer than any other parent there, and walked away leaving one third of my heart behind.

This growing up and getting big and being in someone else’s care for the majority of the day is happening just a bit too fast for this mama bear.

I watched Macyn hang her new sparkly backpack, the one that is almost as big as she is, on the hook outside of her classroom and follow her teachers and new friends inside. I looked through the door, slowly coming toward me until it latched shut and I could no longer see. Then I ran to the window, stood up on my tiptoes, cupped my hands around my eyes and watched as she sat on a green square on the rug. When I turned to walk away, I was crying. My husband asked what was wrong. I told him nothing… and everything. A thousand reasons to be a sobbing mess, yet not one I could articulate.

Macyn is in first grade.

As we start a new school year, we know its unfolding will be different for us than it is for most. I have a daughter who doesn’t fit into the common mold that (unfortunately) has been created for us. She’s a little different. She talks a little funny and doesn’t always know how to make her wants and needs known. She’s a pretty messy eater. Day to day tasks take her a little longer. She’s a little different.

But she’s a lot alike.

She felt the same butterflies your kid felt on the first day of school, and she talked about her teacher and potential new friends all morning as we got ready. Macyn loves to make new friends. She loves music and dancing. She likes watching movies and jumping on her trampoline. Her favorite foods are doughnuts and cake (although her mom and dad don’t let her eat those things very often). She doesn’t like to be alone, and she gets sad when other people are sad and happy when other people are happy. She’s a lot like the rest of us.

The thing that irks me though, the thing that gets my blood boiling is that most people only see the ways she’s different. This is especially obvious when we start a new school year.

And I get it. I think most of us are prone to seek out people who are similar to us. It’s comfortable and predictable and easy. I’ve seen how Macyn gets excited when she meets a friend who is “like her,” another child with Down syndrome.

But I’m learning that I am the best version of myself when I get uncomfortable and seek out relationships with people who are very different than me. People who challenge my thinking. People who look and act differently than me and in so doing open my eyes to the world around me, a world that I’m otherwise prone to ignore or overlook in everyday interactions.

Sure, it’s easy, and oftentimes it’s nice to be with people who are just like us. But life is so much richer when we allow ourselves to be stretched and challenged—when we take the time to learn from one another.

Macyn has taught me so much. She’s opened my eyes to a world I didn’t know, and I would have missed out on it if not for her. She has been my key to the gate of a secret garden, where the beauty of a flower grows from the dirt, where hard work is necessary and growth is slow and the fruit of our labor is so very, very sweet.

But being a parent of a child with Down syndrome has also opened my eyes to weeds and thorns and the occasional bee sting, not because of Macyn, but because of a society only willing to see how she’s different. There is adversity in any garden. There is a struggle happening within every bloom.

Sometimes, school is one of those struggles. School is a tricky part of raising a child with Down syndrome.

You see, she is in a Special Day Class (SDC), a learning environment apart from the other first graders. We would like her to be in a general education class with them, but this is not an option… at least, not without a little fight.

Macyn went through three years of preschool and then a year of kindergarten. In our four years of school, we’ve learned that this little fight for first grade is not going to be easy.

When it comes to our local public schools, I am discovering that when Macyn steps onto the campus, people are not only noticing Macyn’s differences and how they might hinder her education… they’re also worrying about how Macyn’s differences could hinder the education of the other kids. And this, my friends, simply sucks!

It’s such a strange feeling, loving my daughter with every ounce of my being and then feeling the need to convince people of her worth. When we start a new school year, one of the things at the forefront of my mind is the need to prove to the teachers and kids at school that Macyn is worthy of being there.

And she is. All kids with different abilities are worthy of being in class beside your kid(s). All kids with different abilities have great, great worth. And so what if their behavior is not ideal, if they’re in first grade and still learning the alphabet…so what!

As we start this school year I find myself wishing that when I walk into the office, almond-eyed girl in one hand, IEP in the other, people would greet us like this:

“What do you need?”

“We can do that!”

“Let’s get creative here.”

“Nothing is too tricky for us.”

“Anything to keep Macyn in our class!”

And then, the parent of a typical child would overhear the conversation and chime in…

“We are so excited for Macyn to be in our class!”

“Look, Sam, a new friend.”

“She can sit by Sam—he’d love to help her with her alphabet.”

“Gosh, this must be difficult. How can I help?”

At the start of a new school year, I feel as though I’m stepping onto a battle field alone with the goal of proving my child’s worth. MY CHILD!

I do think people mean well, and they do the best they can with the systems in place. I’m so thankful for friends sending me texts to say that they’re praying for us as we start school. I have friends who are teachers beside me in this battle. I have countless friends who have a child with Down syndrome; with one glance, they see the worth of my daughter. These people were perfect strangers to me until the day we were crying on each other’s shoulders because we “get it,” and not many people do.

So, today was Macyn’s first day of school.

She put on her new uniform and slung her new sparkly backpack over her shoulders and we walked to school. As I spied on her though the classroom window, I thought of all the times the Lord gently reminded me to hand her over to Him. I thought about a sick five-month-old being carried back for open heart surgery. I thought about a feisty two-year-old learning to walk. I thought about a confident three-year-old running into her preschool classroom, ready to take on the world. And then I watched her today, as she sat down on the rug with the rest of her classmates, and I know God’s got her. God created her, God sees her worth and not only does He have my back on this battlefield—He’s gone before us, as well.

Here’s to a great year—one that will have its fair share of thorns and weeds and lots of hard work, but one full of fragrant flowers and sweet, sweet fruits.

Photo Credit: Heather Avis

Heather AvisHeather Avis is wife to her handsome and hardworking man Josh, and mother to the adorable Macyn, Truly and August. After working as an Education Specialist she found herself as a full-time stay at home mom when she and her husband adopted their first daughter, Macyn, in 2008. Shortly thereafter, in 2011, they adopted their second daughter, Truly. And in 2013, their son August was born and came home to be theirs. Heather currently resides in Southern California where between oatmeal making, diaper changing and dance parties she is writing her first book and using her hit Instagram account @macymakesmyday, to share the awesomeness of all things Down syndrome and adoption.  She cares fiercely for the underdog and believes the beauty of Jesus is found in the most seemingly uncomfortable places. She’s a hugger and would love nothing more than to sit across a table from you sipping an Americano and delving into all things awesome. Heather can be found on her blog, The Lucky Few, and on Instagram.

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