Down Syndrome Awareness Month in John’s World

October is very special in John’s World.  It is not only Down Syndrome Awareness Month, it is the month of his birthday.  My son, John is Down Syndrome. He has lived with me for almost thirty years, but I am not his birth mother. It is my honor as his stepmother and guardian that John calls me “Mom.”

According to the dictionary definition

Down Syndrome is a congenital disorder arising from a chromosome defect, causing intellectual impairment and physical abnormalities including short stature and a broad facial profile. It arises from a defect involving chromosome 21, usually an extra copy (trisomy-21).

So, John has an extra chromosome that the rest of us do not.  That difference causes him to view the world from a unique perspective.  John can relate better to Rain Man, Forrest Gump and to Kevin, from the movie, Home Alone.

Although we will be celebrating his 48th birthday, his developmental age is somewhere between six and seven.  This is the same place it was last year and the year before that.

John has a way to put a smile on everyone’s face.

He embraces the simple pleasures of life that many of us take for granted.

John is proud to be Down Syndrome
John is proud to be Down Syndrome

October is the most important time of the year in John’s world.  Not just for a day, but all month John will be celebrating the fact that he is alive!

On October 29th he will be 48 years old.  There will be company to greet and gifts to open.  And, there will be cake and ice cream and balloons.  He can see it all now as he looks forward to the great event.

John’s enthusiasm is contagious.

He has reached another milestone.  Nobody gets more joy from hearing the words “Happy Birthday” or blowing out the candles.

In John’s world, his birthday is something to share with the world.  He makes sure that every one knows about it well in advance — the librarian, the grocery clerk, his pastor, other folks at church, the neighbors, the mailman, his family in Texas, in Oklahoma, in Delaware — EVERYBODY!

And, lest they forget, John will be sure to remind them at least ten times before the great day.  Anticipation is everything.

Then for the grand finale, John gets to dress up for Halloween.  Right now, he is vacillates between whether to dress up as Elvis Presley, the green Power Ranger, or Mrs. Doubtfire.

He has a hug for everyone who drops a piece of candy in his bag.

John still sees the world with the eyes of a child even though he has passed this way many times before.

For John there is great comfort in knowing what to anticipate.  Too often John gets confused and finds it difficult to understand or anticipate what is to happen next in day-to-day life.

But smiles and hugs and laughter are free.  Why not do it every day?

I learn from John. He reminds that I need to be grateful that I am alive. Often, he teaches me to celebrate more and appreciate the simple joys of life. John puts a smile on my face.  And I am thankful for the talents and gifts with which God has blessed me. He reminds me that if I were wise, I would spend less time lamenting what I do not have and focus more on putting what I do have to good use.

October is Down Syndrome Awareness month.

Where I live, we are fortunate to have a very active Down Syndrome Guild of Greater Kansas City.  On a recent visit to the guild office I noticed this sign on the wall.

Motto on the wall of the Down Syndrome Guild in Kansas City
Motto on the wall of the Down Syndrome Guild in Kansas City

People with Down Syndrome have the same basic needs we all share — to be loved and accepted.

Can you let some one into your life who may not be your equal, who may not be your peer?  Maybe they will not be able to follow an intellectual discussion – or cannot express themselves as well as you.  This person may live in a different world.  It isn’t always easy.

The Down Syndrome Guild (DSG) supports parents and infants from the moment they learn that the child in the womb is Downs.  Adult Down Syndrome, like John, enjoy free monthly activities for learning and socializing and just having fun.

In fact there is an October Costume Dance Party the night before John’s birthday.  (Oops, John might try to invite everyone there to his birthday party! What do I do then? Rent a hall?)

It is a wonderful organization!

They help educators and business to assimilate our folks with an extra chromosome into the mainstream of the world in which they live.

I have copied the following from the Down Syndrome Guild of Greater Kansas City website:

A COMMON GOAL AND SYMBOL
There are a number of organizations supporting the acceptance and inclusion of people with Down Syndrome. We all share a common goal. Yet, Down syndrome lacks a common identity. So we created one. This universal symbol of DS brings forward in a unique way the one thing that makes Trisomy 21 special— one extra chromosome. With this universal symbol we hope to gain better awareness and ultimately create better outcomes for the individuals and families affected by DS.

Common identity symbol to represent advocacy for Down Syndrome
Common identity symbol to represent advocacy for Down Syndrome

You can get the full scoop on the DSG and order stickers online at kcdsg.org

A couple of those other organization include:

  •  The International Down Syndrome Coalition, www.theidsc.org which coordinates volunteers from around the world that do tremendous work.
  • The National Down Syndrome Society, ndss.org whose mission it is to value, advocate, and strive for inclusion of Down Syndrome into main stream society.

While attending a Down Syndrome Conference last winter, I was amazed to learned about the advances that have been made, particularly in the area of early intervention.  Had these advances been available when John was born, had he not been institutionalized, he would probably be living much more independently now.

Sometimes I feel bad for John.

I wish he could live life to the fullest.  He has missed out, and is left out, of so many things.  People are generally very kind and thoughtful.  But, other times they just won’t let him in. They ignore him because they don’t understand.  Or, they become uncomfortable.  Some people stare at him and this makes him want to hide.

We lived in Panama City, Florida when John was getting ready to celebrate his 25th birthday. It occurred to me that John had never really gone to a prom and that he probably would never get married.

So, I came up with a brilliant idea by my own standards.  Maybe for his 25th birthday, we could take this occasion to splurge!

His Dad and I discussed it and together we decided to gift him with the luxury of a special date night, unsupervised by parents.  John would be dating Cheyenne, a young Down Syndrome friend from his school days.

1993 - For John’s 25th birthday, we hired a limo and rented a tux for him and John and his girlfriend Cheyenne went out on the town in Panama City Beach. John asked the driver to take them to Hooters Restaurant (where the manager gave them free t-shirts and a meal on the house) and to Fun City (amusement part).
1993 – John’s 25th birthday with his girlfriend Cheyenne.  They went out on the town in Panama City Beach, Florida

A limousine driver agreed to play chaperone and chauffeured the couple.  The instructions to the driver were to take the young couple anywhere on Panama City Beach that they wanted to go, within the budget given him.

Dressed in their finest

John in a rented tuxedo and Cheyenne in her Sunday best, took off from our drive way with no parents to pester them, scold them, or otherwise get in the way!

Where did John want to go?  According to the limo driver, John wanted to go to Hooters, Hooters.com.  Yes, this was the restaurant on the beach with the waitresses who all had big boobs (hooters).

In John’s world, Hooters made the best hamburgers so naturally that was the ideal place to treat his date. The restaurant staff was great!

My mind’s eye can only imagine what the restaurant employees and guests must have thought.  Their customers were usually in shorts and tank tops or bathing suits.  After all, this was the beach.

But, John and Cheyenne pulled up in the limo, and walked right into that restaurant arm in arm with their heads held high.

John was THE MAN of the evening.

The manager was entertained and I suppose everyone else was joining in on the celebration. As a birthday gift, the management gave them each a free Hooters T-shirt.  On top of that, Hooters would not accept payment for their hamburgers, fries and sodas.  Dinner was on the house!

Next, they went to Fun City, a Panama City Beach amusement park at that time.  They laughed together and threw their hands in the air, enjoying the rides and feeling a sense of carefree joy and freedom.  It was a memorable night on the town.

It was so memorable that John told his caretaker, Jody, just last night, that he got married on his 25th birthday in the limo on Panama City Beach.  (I wonder if there is more to the story than the limo driver let on.)  

Anyway, during October, I know that in John’s world, he doesn’t know everything, but he does know how to live and love and enjoy life in a way that I admire.  So, I am happy to help him celebrate October, celebrate his birthday, and celebrate life.  Join us!

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4 thoughts on “Down Syndrome Awareness Month in John’s World”

  1. Man, you sure can write ! Your posts can pick me up and set me down in the midst of your world. This is a beautiful story. It just makes me want to spend the rest of my time today being a better person. It is uncommon to read an article written so well. What I felt when I read it was grace. That hard to explain feeling that the reader gets when they read anything that picks them up, sets them down in the middle of this new and different world, and at the end, they feel that they are a better person for visiting. Thanks for posting it, and tell John I said Happy Birthday !

    1. Jamie, thanks a million. And, I will be sure to give John the message! I would like to here what problems you are having or questions you would like to see addressed in the blog. So far, I am just writing as the spirit moves me.

  2. Beautifully written. You’ve brightened my day. I will continue to follow your blog as it will remind me of all that I have. I, too, have been blessed by a son named John. Thank you.

    1. Thanks, Susan. John’s enthusiasm is contagious! Last night he took my hand and asked me to come out on the back patio to see all the stars in the sky. Simple pleasures :-). It is encouraging to me that you will continue to follow the blog. This makes it worth writing.

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