Who is wise?

We are spending the next couple of weekends in New York because of commitments Barry has on Friday and Monday. Tomorrow we are having friends join us for lunch. We have decided to trust the weekend weather forecast and last night Barry bought tickets for the Mets game on Sunday afternoon. We did not want to go to the zoo or the botanical garden because they are very crowded on any nice Sunday, particularly on Mother’s Day.

I have written a number of times about our young friend, Coby, who has Down Syndrome. Recently his mother gave his teacher (at the public school he attends) an interesting article she had read that led the teacher to ask Coby if he wanted to speak to his classmates about having Down Syndrome.

Coby was thrilled with the idea and got started immediately. He wrote the first two pages freehand and then started to type on his own, bringing home the document on his flash drive. His mother helped him to organize the material but the words are his. The final product, which he is to present to his class next week, follows.

Down Syndrome: A New Perspective

By COBY

My name is Coby. I am 14 years old and I have Down syndrome.

I was born on December 12^th 1999 with Down syndrome and I will have it my whole life.

My parents did not know they were going to have a baby named Coby who was going to have Down syndrome. It was a surprise when they found out.  But they tell me I was the best surprise ever and they got very lucky!

Do you want to know what Down syndrome is?

Down syndrome is when someone is born with an extra chromosome.  Most people have 46 chromosomes. Chromosomes come from your mom and dad and shape the way you look, learn and are as a person. I have an extra one! That means I have 47 chromosomes!

My extra chromosome makes me different, but at the same time, I am also a regular teenager just like you guys.

Because I have an extra chromosome, there are some things that might seem or look different about me.

For example, sometimes it takes me longer to learn something or understand how to do something that you might learn very quickly. Like math and money. I work really hard to remember how to count, add and recognize all the coins and bills. But sometimes I forget the things I learned and have to practice a lot more than you do to remember them again.  I wish it wasn’t so hard for me, but this is the way I am, so I do my best.

Another example is that it is harder for me to do sports. I might run a little slower or I might not be able to catch a ball all the time when it’s thrown to me. I work really hard to make myself stronger. I do Physical therapy every Monday night. It helps me become stronger. I also practice tennis and gymnastics to make sure I can do the same things everyone else can do. I work really hard and practice a lot.  

Another thing that happens when someone has Down syndrome is that it is harder for us to speak clearly. The reason is, we have low muscle tone and our muscles in our mouth are not as strong as yours. Just like the muscles in my body are not as strong as yours.  What I do for this is I have speech therapy every week to practice my speaking. So when you go home at night after school to do homework or play a sport or watch TV, I go home and do a therapy to help me do things the way other people do.

I am lucky to have awesome best friends that also have Down syndrome like me.  Their names are Alex, Mia, Andrea, Sam and Chad. I have some pictures to show you that I will pass around.  We get to do a lot of fun things together and like to just hang out. Because we all have Down syndrome we don’t judge each other or feel bad for each other. We just have fun and are happy to be together. 

Even though we all have Down syndrome, we are still different from each other. Some times people make a mistake and think that everyone that has Down syndrome is the same. That is just silly. We are all different people just like all people are different from each other. We don’t all look the same and act the same only because we have Down syndrome. We’re each a different person with a different look and a different personality.

Also some of us can read better than the other, and some of us can play sports better than the other. Some of my friends are in a regular school like me, and some of my friends are in a special school for kids with disabilities because they need extra help with learning and schoolwork. So just like all kids are different from each other in so many ways, so are kids with Down syndrome.

Having Down syndrome can be hard sometimes. There are times in which I get frustrated because I want to fit in and it is hard for me to do all the same things you guys do. And just like everyone else, I can also get my feelings hurt, and it is hard for me to share those feelings most of the time, since not everyone understands what I’m saying, and I get shy, and also like to be happy all the time.

I wish, if someone did not understand me, that they would just ask me to explain what I am saying a little slower and show them. If they give me a little extra time, I can pretty much do the same stuff you do. It just take me a bit longer. So that can be frustrating for me and I know it is something I will always have to deal with in my life.

But I am very lucky to have a loving family and amazing friends who love me for who I am and always tell me how proud they are of the things I am doing.  Every year we all get together and walk for Down syndrome at the Buddy Walk. It is my favorite day of the year. All the people I love get together to walk together for Down syndrome, to raise money for more research and make people in the world aware that we are NOT very different than you.

My mom is awesome because she helps me a lot and she also organizes Down syndrome teen events for my friends and I to enjoy.

I like Beachside because everyone here knows me and treats me nice most of the time. Sometimes when someone does not treat me nicely, I get sad, but I know they probably just don’t understand why I am different. But I have so many great friends here that I really love so much because they take care of me and help me a lot in school and spend time with me, so I love going to school every day.

I am also lucky that my family knows how cool I really am and doesn’t get upset that I can’t do all the things a regular teenager would do. I love hanging out with all of them and I do look forward to going to college and getting a job like everyone else.

I know I might have to work a little harder than a regular kid to do all that, but I am ok with it. And even if it takes me longer to get to college and get a job, I am not going to rush and not going to worry. My mom says I can take my time and one day I will be able to do it all. 

I hope you now understand a little bit more about Down syndrome and what it is like to have it.

If you want to ask me any questions that is ok. I will try to answer as best as I can.

Thank you for listening and learning about Down syndrome.

You guys are really great.

The Talmud, in chapter 4 of Pirkei Avot, Lessons of the Fathers, provides simple answers to some basic, fundamental questions:

Who is one that is wise? One who learns from all people.

Coby has been an amazing teacher!

Love,

Rebecca