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To My Son With Down Syndrome on Your Last Week of Elementary School

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Dear Alex,

Here it is: The week I’ve been anticipating since the first day of school. Tomorrow, you begin your very last week of elementary school. Wow. How quickly it arrived, and what a journey it’s been.

When you started kindergarten six years ago, it was a new experience for both of us. You were excited, probably because it meant a bus ride to and from school and daily access to the school playground. I was optimistic you would be a rock star, and you would have an awesome time in elementary school. What I didn’t realize was how much noise I would have to make at school in order for you to have the experience your dad and I envisioned for you. (You were and always will be a total rock star. No worries there.)

Al, your mom doesn’t like confrontations. While I may have been blessed with a passion for writing, speaking up just isn’t my thing. Before you even started kindergarten, I began to realize I would just have to get over my reluctance to do that — and fast.

Our society tends to operate with a “but we’ve always done it this way” philosophy, and when someone shows up to change that, it’s not always well received. That explains my last six years in a nutshell. You weren’t invited to kindergarten orientation, you weren’t assigned a “job” in your kindergarten class and you didn’t even have lunch with your kindergarten classmates. It seems the two words that were repeated throughout all the paperwork — Down syndrome — preceded you to school and defined your path before you even stepped foot into a classroom. It wasn’t done intentionally to leave you out; this is just how it worked back then.

I was flabbergasted. I had heard stories about children with disabilities not being included and parents who spent a fortune on special needs attorneys so their children would have the same opportunities. I blew it all off. We’re in an excellent school district, and I refused to believe we would have to make a fuss just so you could have a turn being a “line leader” in your kindergarten class. Yet, there we were. I have always been your advocate, Alex, but it was then that I knew I was going to have to turn up my efforts to make sure we were heard.

We started asking for meetings, and I began challenging the standards. And with just a few days left in school, I still haven’t let up. It’s not always received well, and quite often we get the impression our inquiries aren’t appreciated and are taken personally. But we forged on. If hoop jumping were an Olympic sport, I’d be a gold-medal contender! We made a lot of progress. You went from a kindergartner who only joined your peers for a short time each day to a fifth grader who spends most of your day with your peers (as it should be).

It hasn’t always been perfect, Alex. There have been many, many bumps along the way. But the beauty of this whole situation is that you love school. You have wonderful friends, and you like your teachers. You have no idea how much of a pain in the butt I’ve been to the school district. You don’t know how often I’ve banged my head on my desk (sometimes literally!) and cried in frustration after reading your assignments that weren’t properly modified.

You have no idea how often I’ve felt discouraged, how I’ve doubted my advocacy efforts or how I just felt like giving up on some days. But I won’t give up — not ever — because of the other things you haven’t yet realized. Although you’re learning a ton from your peers just by being in class with them, they’re also learning from you. You have yet to discover you’re teaching people that it’s OK to be different. You’re unknowingly showing everyone that if we stop to see the ability in all people, great things can happen across the board. Together, we’re proving that inclusion matters.

There’s still a lot of work ahead of us, buddy. It will continue to be a challenge for me to speak up to ensure you get the education to which you are entitled. Your dad and I will do it, though. We will continue to work hard behind the scenes to make sure you’re seen as Alex and not as a label. You deserve better than that, and I’ll continue to demand it.

So as you walk the halls on Friday for the fifth grade “clap out,” I’ll beam with joy and probably fight back some tears, but I won’t be sad you’re leaving that building. I’m proud of the work we’ve done there, but it’s time to look ahead to the next milestone. We’ll certainly celebrate your accomplishments of the last six years, but I’ve already turned my attention to the adventure that is middle school.

Congratulations, Alex. You’re absolutely a rock star, and I couldn’t be prouder. Cheers to you!

Love, Mom

Follow this journey on Tales From the Duck Pond.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

Originally published: May 22, 2016
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