Must Reads

“Welcome to Holland”

story by Emily Perl Kingsley

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. 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. 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.  Reprinted with permission of the author.
Pasted from http://www.ndsccenter.org/resources/package1.php

“A baby is a baby first”

http://www.ndsccenter.org/resources/package2.php

There is nothing quite like a baby…there’s a lurch in the heart when we touch the beginning of a life in the small person of an infant. For some parents, the lurch is made more poignant, even painful, by the fact of their baby’s diagnosis of Down syndrome.

Recently, I’ve had the great pleasure of holding a number of soft, beautiful babies who have Down syndrome. Their parents want to find out what it all means, what they can do, what to think about the future. The first professionals to talk to the parents of babies with Down syndrome tend to discuss the differences parents may see, difficulties babies will encounter. Armed with information about what milestones their child may not reach, what problems she may have, what services they should obtain to avoid potential problems, new parents want to help their babies as soon as possible. So they come to me (and to numerous others) to get this help…to find therapy, activities, and solutions to problems that may or may not exist.

We just don’t know, at an early age, in exactly which ways Down syndrome may affect a child. She may be really good at cognitive activities, but have significant delays in movement… thereby falling behind her peers in playground and paper-and-pencil activities. He may be fairly good at gross motor, excelling in sports. Ocular control may be an area of need, or may be perfect. Language may be good, or may need lots of work. However, one thing we know for certain… babies don’t deal with these things no matter what their chromosomes look like. They lie down and expect to be carried, cuddled, talked to, fed and generally catered to. They learn they are lovable, cute, and the center of the universe. They begin to know who their family members are, and who is the soft touch in the house in the middle of the night.

If these adorable creatures have Down syndrome they are at risk for certain physical and cognitive delays. It behooves parents to keep an eye open for problems that could arise. It’s important that they know something about their child’s diagnosis so that they can be alert and helpful. But my belief is that the most important things that parents of babies with Down syndrome can do are exactly those things that all parents do. You know: they cuddle, feed, sing and love. Not the kind of things you need a Developmental Therapist for… or any other therapist, for that matter.

I want to be clear. Young children with Down syndrome often show delays that need to be remedied so that these kids can be happy with themselves and do their very best. Very young babies with Down syndrome have specific concerns about early development. And doubtless, parents will find themselves driving this child about for ear infections, speech therapy, developmental evaluations, etc. But the main advice I have for parents of new babies with Down syndrome boils down to this:

You have a beautiful new baby.

There will be some areas that need work, but what you have right now

IS PRECIOUS AND PERFECTLY RIGHT.

Kate Sefton, Master Developmental Therapist