New Parent

Congratuations!

Congratulations on your new baby! 

If your newborn has just received a Down syndrome diagnosis, you are probably experiencing a whirlwind of emotions. The first thing to understand is that you are not alone. In the Greater Charlotte Area, there are over 500 families whose children have Down syndrome. The DSAGC represents the interests of all these families, providing critical support and programs, such as the Parent's First Call Program, the latest information and opportunities to connect with a parent mentor.  

Parents’ First Call Program
For new parents of babies with Down syndrome, an opportunity to speak with other parents who have experienced what you are experiencing can be invaluable. The DSAGC Parents' First Call Program is a volunteer group of trained parent mentors available 24/7 to listen, share, answer questions, and provide valuable information.  If you would like to speak with a First Call parent, please call 704-916-9871 or e-mail mailto:tleyton@dsacnc.org.

Online Resources

Recommended Books 

  • Down Syndrome Parenting 101 by Natalie Hale
  • Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, edited by Kathryn Lynard Soper. 
  • Common Threads: Celebrating Life with Down Syndrome by Cynthia Kidder and Brian Skotko. 

The NDSC has a recommended reading list as well. Woodbine House Publishers  specialize in books on a variety of developmental disabilities, including Down syndrome.

Adoption
We understand that not all birth families feel they are able to meet the needs of children with Down syndrome. The National Down Syndrome Adoption Network provides information to birth families who may be seeking alternatives to parenting as they prepare for the arrival of their child. The network currently has over 200 registered families, each waiting to adopt a baby with Down syndrome.  You may contact them directly at (513) 213-9615. 

(Many thanks to the Massachusetts Down Syndrome Congress for support of our Parents' First Call program.)

Welcome to Holland

by Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved.

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 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.

 

How We Help

• Bi-Monthly newsletter
• Camp Horizon for children with Down syndrome; ages 10–17
• Camp Holiday for children with Down syndrome, ages 5–16
• Community groups
• Information on DSAGC web site (www.dsa-gc.org)
• Lending library
• Local educational seminars for families and professionals
• New parent brunch
• On-line chat group
• Scholarships to national conferences
• Social gatherings
• Support for Spanish speaking families

  • 08/29/2013 -- DSAGC Creates First Public Service Announcement! ... Read More
  • 09/30/2013 -- Radio interview with Kathryn Lariviere, Cam Brasin ... Read More
  • 10/29/2013 -- Parents' First Call Program Featured ... Read More
  • Down syndrome Charlotte