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Congratulations !
 

Dear New Friend,
 
Congratulations on the birth of your new baby!
 
If you are reading this now, then you have probably found out that your baby may have Down syndrome. You are probably feeling afraid and uncertain. Most all parents experience this when they hear their child has an extra 21st chromosome.
 
Take a deep breath and relax a little. We have been where you are. Now is the time for you to get to know your baby and love each other. You probably have lots of questions and hopefully you may find some answers here on our website or through our support group.
 
Because Down syndrome is the most common viable chromosomal anomaly, there is a great deal of research and up-to-date reading material for you. Your child has had 47 chromosomes since conception, NOTHING YOU DID OR DIDN’T DO, BEFORE OR DURING YOUR PREGNANCY, caused the genetic defect. Each parent contributes 23 chromosomes to the child. In the case of Down syndrome, there is an extra 21st chromosome which occurs when there is a faulty cell division.
 
The physical features of the syndrome were first described by John Langdon Down during the 19th century which is why it is called “Down syndrome” and not “Down’s syndrome.” While it is more common for women thirty five and over to conceive a child with a genetic defect, you will find many of the mothers in our group were younger than thirty five when their child was born.
 
You may very well hold stereotypes in your own mind about what your child will look like and be like, but try to let that go. Accept no limitations. The more you expect from your child, the more he will grow to his full potential. The best thing you can do right now is love, nurture and relate to your child like you would any other.
 
We have many parents with experience who can help you successfully find out information about programs that your child can receive. One very important program, for example, is Early Steps/Early Intervention. This is one way which will help your child develop and reach higher potential. One of the key aspects of our organization is the stories, day-to-day experiences and support parents of children with Down syndrome can share with you and your family members. The association also sponsors a number of events during the year that allow our children and their families to get together and interact in relaxing environments. These events are special for the entire family.
 
You may find it comforting to just look at the pictures on the website and perhaps read some of the family narratives. We would then advise you to look at the website links and share the medical articles and growth carts with your pediatrician.
 
As members of the Down Syndrome Association of Acadiana, we have learned a tremendous amount from each other. We have many families, from all walks of life involved with our group. They are stay at home parents, teachers, therapists, counselors, secretaries, attorneys and plenty of other professionals. We want you to know that we are here for you. While you may not feel comfortable talking to someone you do not know, we encourage you to pick up the phone and make that first contact.
 
We have all experienced the full spectrum of emotions that comes with having a child with special needs. If you would like to have someone visit you at your home or in the hospital, for if you would like to ask questions about what it has been like for us, please do not hesitate to call on us. If your child has specific medical issues associated with the syndrome, there are members willing to talk about their child’s experience and share their insight. This is part of the parent to parent pairing we have through our association.
 
We also have a 24-hour information line which will give you information about our meetings and other events. You can leave your name and phone number and someone will return your call.
 
Please take your time in searching through our website, getting acquainted with our families and becoming more familiar with the links on Down syndrome. The first weeks after any baby’s birth are stressful and hectic for all parents. Be sure to allow yourself time to relax and to get to know your precious angel.
 
With Warmest Regards,

DSAA New Parent Support

 

Welcome To Holland
by Emily Perl Kingsley

©1987 by Emily Perl Kingsley. All rights reserved.  Reprinted by permission of the author.

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 flight attendant 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 out 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....and 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 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.

 

Down Syndrome Association of Acadiana
P.O. Box 81323
Lafayette, LA  70508-1323
Phone: 337-234-3109
dsaa@dsaa.info

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