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Genes Week

by Christine Lindsey in From the Executive Director

This is an article written by Leaha Jones, one of our foster care therapists. Read what she has to say about down syndrome and raising awareness. 

As a new mother of a beautiful baby girl with Down syndrome, I feel it is important to promote awareness about this disorder.  March 21st is World Down Syndrome Day or “Gene Day”.  Individuals are asked to wear jeans on Wednesday, March 21st in order to show support and help raise awareness about Down syndrome.  Down syndrome is a genetic condition which causes intellectual and physical delays.  It occurs in one out of every 691 live births making it the most frequently occurring chromosomal disorder.

 

It is important to remember that while children with Down syndrome have mild to moderate impairments, they are more like other children than they are different.  With the help of early intervention services including: speech therapy, physical therapy and occupational therapy, many children and babies with Down syndrome develop right along with children who do not have the disorder.  Some children with Down syndrome can learn in a regular classroom setting while others require special education services.  Individuals with Down syndrome can graduate high school and are capable of attending higher education.

 

Many children with Down syndrome have health complications that go beyond that of other children.  Some examples may include: heart defects, childhood leukemia, lowered immune system causing a higher incidence of respiratory and viral infections, thyroid problems, hearing loss and vision problems.  However, with appropriate medical care, many people with Down syndrome can lead healthy lives.

 

It is important for families of children with Down syndrome to seek out support.  There are local groups that meet on a monthly basis and provide support to new parents.  Having a baby with Down syndrome comes with a variety of emotions but it is essential to remember that your baby is a baby first. 

 

Emily Perl Kingsley described what life was like with a child with Down syndrome in her essay, “Welcome to Holland”.  Here is the essay in entirety:

 

“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 Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several 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 guidebooks. 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. You begin to notice that Holland has windmills. Holland has tulips. And 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 experience will never, ever, ever, go away. 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.”

 

For more information about Down syndrome and how to find support in our community, please contact Lincoln Land Down Syndrome Society President, Jason Schnepp at (217) 741-1832 or visit www.lldss.org.

 

Leaha Jones, MSEd, LPC, NCC

Foster Care Therapist

Christine Lindsey Email