World Down Syndrome Day 2013 - Celebrating Inclusion, Acceptance and Education

Happy 2013 World Down Syndrome Day!!! Today is also the 2nd birthday of Cowgirl Up! My husband reminded me last night that I started this blog two years ago. It is also my goddaughter's birthday and my brother's birthday. March 21 is a big day!

This year I was asked to write a guest post for the Summit DD blog in honor of today. It is my first guest post and it was such an honor to be asked to write about Joey and Down syndrome. I hope you enjoy it and I hope you have a wonderful World Down Syndrome Day!

World Down Syndrome Day 2013 - Celebrating Inclusion, Acceptance and Education

My name is Jennifer Towell and I am an attorney, blogger, writer, advocate and the proud mom of two young boys, Thomas (4 1/2) and Joseph (2 1/2). Our youngest son, Joey, was born with an extra 21st chromosome, which is also called Down syndrome. When we were pregnant with Joey we were told he would never survive because of fetal hydrops, a septated cystic hygroma and a congenital heart defect. To our great joy and surprise, Joey not only survived, but has thrived!

All photos by Nat at Love What I Do Photography.

When he was barely two months old we first met with our Early Intervention team through Help Me Grow. My husband and I were both working and I never thought we would qualify for the services that Joey received through Early Intervention and Help Me Grow. Fortunately, we were wrong. It was not us who qualified for services- it was Joey. For the past 2 1/2 years he has received support and advocacy through his Early Intervention team. It seemed so strange at first to not pay anyone for these services, but as my mom told me, we do pay, through our taxes and through levy support. For that we are very grateful to our community. Through open heart surgery, eye surgeries and other procedures, our EI team has provided us with guidance, encouragement and support.

This past year, we have worked hand in hand with Jennifer at the Community Partnership for Inclusion, which has helped provide Joey with the opportunity to attend the same preschool as his brother Tommy. We never dreamed in a million years that Joey would be able to attend a "typical" preschool at age 2. You see, at this time, Joey does not walk, stand or talk. He communicates with sign language and a few words, but because of CPI he is able attend It's All About Kids Preschool. Joey will stand, he will walk and he will talk someday and getting to attend preschool is what will help him achieve these and many other goals.

Today is one of his school days. He attends on Tuesdays and Thursdays and today he and his school will be celebrating World Down Syndrome Day. Today we celebrate and advocate for the rights, inclusion and well-being of individuals with Down syndrome. The date of 3-21 is significant in that individuals with Down syndrome have 3 copies of the 21st chromosome. In other words, they have an extra chromosome. Most people have 46 chromosomes, but individuals with Down syndrome have 47.  I like to say, "Joey has 47 chromosomes, how many do you have?"

Not everyone understands what Down syndrome is. When our son, Joey was first diagnosed with Down syndrome we were told he has a "genetic abnormality." We prefer to call it a natural genetic variation. Here are just a few facts about Down syndrome:

• Down syndrome is a genetic variation in which the individual has 47 chromosomes instead of 46.
• There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.
• Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.
• Individuals with Down syndrome have an extra copy of the 21^st chromosome (the smallest chromosome) and thus, 3:21 is the day World Down Syndrome Day is celebrated.
• Down syndrome occurs in people of all races and economic levels.
• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, leukemia, and thyroid conditions. Many of these conditions are now more treatable, so most people with Down syndrome lead healthy lives.
• Some of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
• Life expectancy for people with Down syndrome has increased dramatically in recent decades—from 12 in 1912, to 25 in 1983 to 60 today.
• People with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
• Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.
• Most importantly, people with Down syndrome are more like you and I than they are different.

What do I say to someone who is pregnant with a baby who has Down syndrome?

"Congratulations!" is the perfect thing to say to a family who is having a baby with Down syndrome. "Have you got the nursery ready?" is another option. What you should never say is, "I'm sorry." Please don't say that. We aren't sorry, we hope you don't feel sorry for us or for our child.

What do I say to someone who gives birth to a baby who has Down syndrome?

See above. "Congratulations!" is again the perfect response. Anything you would say to any other new parent is perfect. Things like, "What is the baby's name?" or "How much did she weigh?" or "How is he sleeping?" are all wonderful questions. Again, comments like "I'm sorry" or "How severe is the Down syndrome?" should be off-limits. Babies are a reason to celebrate! The last thing a new mom or dad wants to hear about their new bundle of joy is "I'm sorry."

What do I say to the parent on the playground who has a child with Down syndrome?

Please say anything you would say to start a conversation with any other parent. But, please, please don't stare. Please don't look our little one's helmets, glasses, orthotics or other equipment and just stare or break eye contact. Parents of children with Down syndrome are just like anyone else. We have great days. We have tough days. We love our kids. Some days our kids drive us crazy.

What do I say to a child with Down syndrome?

What would you say to any other 1, 2, 3, 4 or 5-year old? Say that. Ask the child his favorite color. Ask her what her favorite book is. Tell a funny story about yourself or your child. Basically-- just treat us and our kids like anyone else. That is all we ask. We ask for an opportunity to be a "typical" part of your church, your synagogue, your school, your neighborhood-- your life. The most important any of us can provide someone with a disability is one word-- opportunity. Opportunity to be a friend, a student, an employee. Opportunity to show you how we can shine and how we can live up to and beyond expectations.

Aren't people with Down syndrome happy all the time?

No! Absolutely not! This is a myth. Individuals with Down syndrome experience all emotions just like you and I do. They feel happy, sad, frustrated and angry like everyone else. Someone once told me that I was so lucky because Joey would never experience loneliness or despair. I told them he absolutely would experience those emotions. I think there is a common misunderstanding that individuals with developmental disabilities aren't intelligent enough or aware enough to feel sad. This is not true at all. Individuals with Down syndrome and other developmental disabilities may take a little longer to respond because of speech difficulties, but they have feelings like all of us and there are times when they experience joy and there are times when they experience sadness.

What do I talk to a teenager or an adult with Down syndrome about?

This is an area that I am not as familiar with, but I strongly believe in the same approach as above. While individuals with Down syndrome may have hearing or speaking difficulties, they DO understand your words and your actions. They may take longer to respond to a question, but they understand the spirit of your approach.

Below is a wonderful video called "Just Like You"  made with the Down Syndrome Guild of Greater Kansas City featuring three teenagers and their friends openly discussing the special needs of peers with Down syndrome.  I sincerely hope you will watch this video as the impact of what these individuals have to say about themselves tells far more than I could ever hope to express because unlike my view from the outside as a mom, these three teens have Down syndrome.

What is it like to have a child with Down syndrome?

Having Joey as a son has provided our family with more love and more joy than we could have ever imagined. He is so much like his older brother that on a daily basis my husband and I say to each other, "Do you remember when Tommy used to do that?" Joey's very existence has made our family more aware of the world around us and much more aware of the differences in every individual. Joey has made us more compassionate, more patient and more accepting. My heart feels like it will burst with pride on a daily basis as Joey makes progress and learns new skills. His life has been the best gift our family has ever received.

Happy World Down Syndrome Day!

As we celebrate this 21st day of the 3rd month, I ask you to consider how you might make a difference in our community for an individual with a developmental disability. Not just Down syndrome, but all disabilities. Do you have a place for a person like Joey in your school? In your classroom? In your workplace? In your church? In your world? In your heart?

We hope so.