I Have Down Syndrome Too!

I Have Down Syndrome Too!

This week our guest blogger is Mary Goewey. You can see updates on Nicholas' progress on Instagram @limitlessnicholas and learn more about their story at www.limitlessnicholas.com.

I went through a difficult time following my son’s diagnosis six days after his birth. I can only describe this time as a depressing and anxiety-filled blur. I didn’t want to talk to anyone, I didn’t want to accept anyone’s help, and I certainly did not want people looking at my son and picking out flaws on his perfect little face.  

When I returned to my job as a second-grade teacher months later, I was not fully prepared to discuss Nicholas's diagnosis yet.  I was so afraid that if someone brought it up, I would break down crying.  What would the kids think of their long-absent teacher then?  What would my colleagues think?

As World Down Syndrome day approached, I knew I had to tell my students.  As much as I wasn’t ready to talk about it, I could not let this day go by uncelebrated. I was afraid of what their reactions might be. What if they said something hurtful? What if they used the r-word?  I am good at controlling a conversation in a classroom in a way that keeps me unbiased usually, but this couldn't be one of those times. Not when we were talking about my baby.

I went online and bought a couple of books to help me out, and chose one that seemed pretty kid friendly.  I read one to them a few days before World Down Syndrome Day, and I had also prepared a slideshow with a couple of facts about Down syndrome, explaining that it isn't something you can "catch" and it doesn't mean you have a disease. It just means you were born a little different.  This is the picture I chose to introduce them to Nicholas:

They gave the reaction that most people would give to this picture:


“This is Nicholas, the baby that I had while I was away from you all.  He actually has Down syndrome.”

The room was silent for a moment.  I told them that sometimes, it might take kids with Down syndrome longer to learn to do things, like run fast, ride a bike, or read. I used Nicholas as an example, saying that other babies his age are sitting up and supporting their heads, and he is not quite there yet.

Then, one student said something that started the most meaningful conversation around Down syndrome that I could have never started on my own.

"I have Down syndrome."

Of course, this student did not have Down syndrome, and he sometimes was a behavior problem in class. I wasn't sure whether he was truly confused, or he was just trying some attention-seeking behaviors. I stayed quiet for about ten seconds, searching for a response.

"Why do you say that, my friend?"

"Because it takes me longer to do a lot of stuff.  Everyone in the class can read better than me."

Then, it completely clicked in my head. This is perfect, and I am going to run with it.

"This is a perfect example of how students with Down syndrome are more like you all than they are different."

Then, another kid piped in.

"I can't ride a bike yet, but all of the kids on my street can.  Do I have Down syndrome?"

At this point, I was getting a little teary-eyed.  It was as if they were explaining to me why everything was going to be okay. All the kiddos in my class, who I was just getting to know, had the same difficulties that Nicholas might face. This was a more profound moment in my life than those kids could have realized.They became so interested in learning about Down syndrome that I had to get a lot more materials together.

On World Down Syndrome Day, I paired them up with students who I had noticed did not interact with each other very much. I had them interview each other, and fill out a Venn diagram. Each diagram was jam packed in the “alike” sections and bare on the “different” sections.They then did a writing piece about how they are more alike than different from each other.  Many of them came that day with some facts that they researched on their own about Down syndrome. It was such a beautiful day.

I rediscovered my purpose as a teacher: to show my students that differences in other people in our communities is a beautiful thing.  All people are different! They all have different skills. They all succeed at different paces. If I can continue this way of teaching, then maybe someday we will live in a place where differences are celebrated in the world as much as they are in my classroom.

If you are just learning that your child has Down syndrome, I hope you can find it in your heart to celebrate it, rather than fear it.  My biggest regret is being so blind to the possibilities for Nicholas that I was actually sad when I heard the news. I can’t even believe that version of myself existed. He has made me such a better person and teacher.  I would not change a single thing about Nicholas. I know now that I am the lucky one.

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