Friday, August 24, 2007

Welcome to Holland

Emily Perl Kingsley was told by her doctor that the Down Syndrome baby she had would never amount to anything and that, to spare her the grief of "putting up with him", he should be institutionalized and forgotten. She wouldn't hear of it.

She wrote a famous piece that has inspired and encouraged countless parents of special children. I am honored to present that piece to you.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans - the coliseum, the Michelangelo David and the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands and the stewardess comes in and says, "Welcome to Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy!"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

© 1987, by Emily Perl Kingsley. All rights reserved.

As it turns out she was very right. Her "amounting to nothing" son Jason is an accomplished author, artist, musician, actor and linguist.
When we went to see her son's presentation we had the wonderful opportunity to meet Emily Perl Kingsley.

Here is the author with Mendele: She has a message for Mendele's family and friends:

"Hi, I'm Emily. I'm proud to be Jason's mom. I congradulate you on little Mendele who is going to be (he is already wonderful and he's just going to continue to be) more and more wonderful. Just keep loving him, stimulating him and giving him as enriched an environment and a life as you can and he'll be a joy to you and your whole family."

(Parenthetical note:
Jason's co-auther, Mitchell Levitz parents were also there and Mitchell's mom has a message for us as well:

"We're very happy that you're here and had an opportunity to meet Mitchell and Jason and get a sense of the road ahead. We hope that you have a very happy life and enjoy every day to the fullest."

Mitchell's father Jack Levitz with Mendele:

End of parenthetical note.)

Sunday, August 19, 2007

Count Us In

Welcome back friends.

Thursday, a couple of weeks ago, we went to see a presentation by two 30+ years old men with Down syndrome. These two men, Jason Kingsley and Mitchell Levitz are quite well known in the DS world for their (and their parents) amazing accomplishments both in their personal lives and on behalf of the entire DS and disabled community.

Perhaps their most valuable accomplishment was to write a book about living with Down syndrome. The book was originally published when Jason was 19 and Mitchell 22 years old.
It has recently been reprinted with a new afterward by the authors to include any new knowledge or wisdom collected over the past twelve years.
I've read and reread many of the wonderful pieces of this book and there are many great lessons in it but I think that if one were to sum the book up in just a few words this is what it's about:
Jason, Mitchell (and all people with Down syndrome) want you to know that they are regular people. They have feelings like you and me. They have dreams like you and me. They even fool around like you and me. These are regular hearts and minds, with feelings and thoughts, bottled up in a body with a disability. They hurt from it, it is not easy for them. However, given the right opportunities they will grow and blossom into wonderful, productive members of our society.
I think this sums up their message.
One of the wonderful things I noticed at the presentation is that people with Down syndrome have personalities just like you and me. Jason is a fun loving, happy go lucky guy and his outlook on life with DS is highly influenced by his passion for fun and games.
Mitchell on the other hand is the intellectual type. He's the kind of guy who is very well thought out, very practical, down to earth, not given to fantasies. Of course he expresses more of the pain and frustration people with disabilities feel. To this end Mitchell sits on community boards and government committees helping to change some of the current legislation regarding disabled and retarded people.
They are both living the lives they were born to live, Jason with a light job and a fun an games personal life (see below the picture of Jason and his housemates who call themselves "The Three Musketeers".) while Mitchell is, for all practical purposes a lawyer, a politician.
After the show we picked up a copy of their book "Count Us In- rowing Up With Down Syndrome" and got it personalized and signed by the authors. They wrote, "To Mendele a dear friend" and signed it.
And here they are holding their dear friend Mendele.

A real Kodak moment.Jason and his Housemates, "The Three Musketeers".
By the way, Jason Kingsley is the son of Emily Perl Kingsley, the author of "Welcome to Holland".
p.s. I suggest that parents read the book before allowing their children to, because many aspects of life are discussed quite openly.

Some more great pics

Mendele is learning how to balance himself while sitting.
Just a cute shot ;)
This is called Protective Extention, using our hands to stop ourselves from falling. Mendele is proud of his progress here.
What could be better than munching on a pepper.
Bath time - a favorite.
Some day G-D willing Mendele will take real lessons.
Anything the right size.
Mendele and his friend Baruch.
Lots more coming!

Thursday, August 16, 2007

Hi Friends!

My Mommy put me on my back, but I just rolled over!

And that's all I have to say.
So long... Mendele!

Saturday, August 11, 2007

Homeopathy's Answer to DS

Mendele's Zaidy gave him a homeopathic remedy soon after he was diagnosed with Down syndrome. Let me tell a little about this remedy:

A homeopath in India discovered that the “Mongol Child”, otherwise known as Down syndrome can be treated with a remedy called Baryta Carbonica. He found that the remedy can enhance the DS child’s development, in some cases improving his IQ to the point that the child can no longer be considered even mildly retarded.

Baryta carb. is made from a mineral called Barium Carbonate. This mineral is also called witherite after William Withering the man who discovered it. Barium is found in minerals in the earth's crust. It grows very much like quartz. If you heat it up it will glow in the dark. It’s used in the making of television screens, fancy glass goblets and eye glasses, bricks and cement.

Barium carbonate is actually quite poisonous. Its main use is in rat poison. However, homeopathy doesn’t use the actual substance in its remedies. The original ingredient is diluted so much that not even a molecule of it remains in the medicine. The only part that is left in these remedies is the electromagnetic energy.

Like most homeopathic remedies, the easiest way to understand Baryta carb. is by understanding the “Baryta character”. The main characteristic in Baryta people is that they don't act their age. Baryta children are behind in their development, Baryta adults behave childishly and old people act like children again.

All Baryta people have not fully matured in some aspect of their personality be it on the physical, emotional or mental plane. Children who need this remedy tend to be late walkers and talkers with large heads, whose bodies may not have grown properly or reached full maturity (thus the likelihood of infertility in DS children). Elderly people who require this remedy may have senile dementia or may have suffered a stroke and been left with a handicap.

In short Baryta carb. is meant to encourage the underdeveloped to finish developing. The suggested dosage is 1 dose of Baryta Carb 10M per year. (Please, do not administer anything without the guidance of someone knowledgeable in Homeopathy.)

Please let me know if you've tried this remedy and whether you've seen any major changes at all. Also if you have any questions about what I wrote here feel free to pick my brain.

Saturday, August 4, 2007

Mendele's Week

Hi friends.
This week Juliet and Leslie worked Mendele harder than ever. We are trying very hard to build his "trunk support", a vital ability without which one can neither sit nor stand and surely not walk.
Take a look:

Tada! After therapy it's back to play!
This is Mendele's new Bumbo Seat TM.
This is Mendele's xylophone, finally in picture!
And this is Mendele's new and improved smile.
So, from under the couch (the only place he can scoot to), Mendele wishes you all a good week.