Welcome to the World
In Honor of a New Neshoma; An insider’s Perspective
Welcome to the world.
I’ve been here for 25 years.
I also have Down syndrome.
I’ll help you get aquatinted with your special journey.
Our families are very close.
In fact, your mother and I are very close.
She was a teenager when I used to visit her and she was always very loving towards me.
Little did she know what the future had in store for her.
Her mother and my mother are best friends.
Hey, ya’ never know how things come about.
As you might have noticed, you were created differently.
Didn’t anyone tell you before your arrival?
Your parents had no clue when you were born.
I’m sure they were in shock.
Your extra chromosome definitely put a wrench into their plans for you.
So much for dreaming.
Did you notice their tears in the hospital?
Did you pick up on the somber atmosphere or the hushed conversations that came along with your birth?
Despite the delicious food at your Bris, there was an undertone of solemnity.
Did you hear the sobbing coming from the ladies’ section?
It was definitely not the typical scene you might have been expecting.
Your father spoke beautifully and touchingly about this new journey thrust upon them.
But I could tell that he wasn’t too happy about what he now has to deal with.
Truth is, he has NO CLUE what’s ahead.
But knowing him and your mother, they’re going to be awesome!!
You’re lucky to be born into such an accepting and embracing family.
Your parents and grandparents are crazy about you!!
They love you for who you are, not for who you aren’t.
My experience was somewhat different.
I was born 25 years ago.
My grandparents had a hard time adjusting to the new reality even though I felt their love immediately.
My grandmother cried.
I remember seeing her tears.
She was very distraught.
But with time she became my biggest advocate and was very supportive of my mother and father.
She acknowledged their struggles and validated their pain.
She and my grandfather visited often and I could feel their love, but I also sensed their feelings of loss.
Down syndrome comes along with a mixed bag of emotions; love for the child, yet sadness of what could’ve been; the loss of a dream, the loss of potential.
It takes a lot of effort to change expectations.
It takes a long time to reach “acceptance”.
Their generation considered me a “Mongoloid”.
Sounds like a monster from a horror movie.
Thankfully we don’t use this archaic and degrading word anymore.
“Down syndrome” doesn’t sound great either.
But it happens to be named for the physician who actually recognized our unique condition.
I always wondered why his name couldn’t be Dr. Happy instead of Dr. John Langdon Down.
Would you believe that my eccentric great-uncle actually referred to me as a “tragedy”?
Isn’t that insane??
He actually wrote a heartfelt card to my mother saying
“I’m sorry about your tragedy.”
My mother called him up and invited him over to meet the “tragedy”.
But, of course, after meeting me and getting to see how adorable I was, he was hooked and loved hanging out with me.
I had him wrapped around my pudgy little fingers.
Just to set your expectations, because of your low muscle tone, you’re going to be working very hard to improve it.
You’re going to meet many devoted therapists and teachers who will drive you crazy while helping you reach your goals.
Be nice to them.
Your physical therapists will be trying to get your low muscle tone to optimal levels so that you can sit, crawl and eventually walk.
The same goes for your speech therapists who will help you with language, vocabulary, articulation and audibility.
You need these skills so that you can express yourself clearly and communicate your needs and thoughts.
After all, shmoozing is the name of the game.
We love to shmooze.
The occupational therapists will focus on your fine motor skills which will help you dress, take care of your personal hygienic needs and a host of other things you will need to do for yourself at some point.
Be grateful for their help.
It’s hard work, but crucial for your development.
My first steps took place on my Shabbos table at age 2.
I didn’t speak for a few years which caused many unpleasant behaviors.
Toilet training is not a topic I want to discuss,
But let’s just say I took my time, which drove my mother crazy.
Looking back at my life I know deep down what an asset I was and still am to my family.
I also recognize how challenging it was.
I owe my parents my deepest gratitude for stretching in ways they could have never possibly imagined.
My family, and community have all gained from knowing me.
I see the positive influence that I have made on others and the impact that I continue to make on the world, one person at a time.
I continue to bring Simcha into the lives of those who know me. I see it in their smiles.
I have made a difference in the world and
am proud of my accomplishments.
I wish for you Chaim, the same.
Welcome to the world.
Enjoy your journey.