“I Didn’t Know I Had Down Syndrome Until I Was Almost 21”

When I was almost twenty one years old, my parents sat me down and told me something I never expected to hear.

They told me I was born with Down syndrome.

I just looked at them.

I didn’t know what to say.

I thought maybe they were joking at first.

Then they told me they had known since before I was born.

My family knew.

My doctors knew.

My teachers knew.

I was the only person who didn’t.

A lot of people think I should have been angry.

Maybe they would have been.

But I really wasn’t.

I was just surprised.

I kept thinking, “How did everybody know except me?”

The strange thing is that after they told me, nothing really changed.

The next morning I woke up and I still felt like myself.

I still liked the same things.

I still had the same dreams.

I still laughed at the same jokes.

I still wanted to work hard and have a good life.

The only difference was now I knew why some things had always been harder for me.

School was not easy.

Writing took me a long time.

Math was even harder.

Sometimes everybody else understood things much faster than I did.

I always thought that was just who I was.

I got extra help in school.

I had tutoring.

People worked with me one on one.

I never really questioned it.

I thought maybe some kids just needed more help than others.

I didn’t know there was another reason.

When I asked my parents why they never told me, they said they wanted me to grow up feeling like everybody else.

They didn’t want me thinking I couldn’t do something before I even tried.

They didn’t want me using Down syndrome to decide what my life could be.

They wanted me to believe I could chase my own dreams.

I have thought about that a lot.

Maybe if I had known when I was little, I would have looked at myself differently.

Maybe every time I had trouble in school I would have said, “Well, that’s because I have Down syndrome.”

Maybe I would have stopped trying as hard.

Or maybe I wouldn’t have.

I don’t really know.

Nobody can know.

What I do know is that I had a happy childhood.

I never walked around thinking I was different.

I thought I was just another kid.

I made friends.

I went to school.

I played games.

I laughed.

I dreamed about the future.

That was my life.

Finding out didn’t erase any of those memories.

It just helped explain some things.

Now I understand why writing has always been difficult for me.

Sometimes I know exactly what I want to say, but getting the words out is hard.

That can be frustrating.

But it doesn’t mean I don’t have thoughts.

It just means I need a little more time.

People sometimes think having Down syndrome means you can’t have a normal life.

I don’t believe that.

I have hobbies.

I like learning new things.

I want a good job.

I want to keep getting better every year.

I have goals just like everybody else.

One thing I really love is space.

I can spend hours learning about planets and stars.

I think about how big the universe is and how much we still don’t know.

It makes me excited.

Maybe one day I can help people learn about space too.

Who knows?

That would be pretty awesome.

After learning about my diagnosis, I also learned something about myself.

I realized I had never been living as “a person with Down syndrome.”

I had just been living as me.

Maybe that’s why the news didn’t change me very much.

I didn’t suddenly become a different person.

I was still the same son.

The same friend.

The same guy who likes to laugh.

The same person who wants to work hard.

The same person who wants a good future.

Some people have told me they would have wanted to know much earlier.

I understand that.

Everybody feels differently.

For me, I don’t spend a lot of time wondering what would have happened if things had been different.

I like looking forward more than looking backward.

Life is already happening.

I don’t want to miss it because I’m always thinking about the past.

If there is one thing I hope people understand after hearing my story, it is this.

Down syndrome is something I have.

It is not everything I am.

I still wake up every morning thinking about what I want to do that day.

I still make plans.

I still have dreams.

I still want to keep learning.

I still want to make people smile.

At the end of the day, I am just a person trying to live a good life.

I think that is something everybody can understand.