Kevin and Heidi and Family: March 2010

I belong to a couple of online Down syndrome forums. Somebody posted a link to this article. It actually made me cry... in a good way. I wanted to share it with everyone who loves us and our Kyle.

Simply Said… Stephanie about Down syndrome
In Simply Said on March 25, 2010 at 9:00 am

Top five truths about Down syndrome
1. Like everyone else, people with Down syndrome are individuals with their own strengths and challenges. Andy is an amazing photographer, bike rider and tech wiz like his dad, but reading and math are harder for him. Others of his friends with Down syndrome are reading at grade level and working on fractions but may struggle with speech. However, one thing they have in common is that opportunities continue to improve for all of them.

2. Most parents of children with Down syndrome say their children have a positive impact on their entire family and increase their appreciation for humanity and empathy for others. In fact, the parents of children with Down syndrome actually have a lower divorce rate than average. For us, Andy’s birth was the defining moment of our lives. You can find some amazing stories at Kelle Hampton’s blog and in the book, Gifts.

3. Studies show that most siblings of children with Down syndrome actually tend to be more compassionate and well adjusted than their peers. My 7-year-old daughter Kate says of all the different kids we meet who have Down syndrome, cerebral palsy and autism, “They’re just like us.” At such a young age, she understands naturally what it means to view people without bias or stigma — a true gift. You can hear more stories from siblings in Gifts 2 and from Brian Skotko — one of my favorite sibs and a leader in the community. My essay about Andy’s first cub scout Pinewood derby also appears in this book.

4. People with Down syndrome are increasingly finding meaningful jobs — like teaching assistants, legal assistants, lab technicians, artists, actors and more. One of my personal heroes is Karen Gaffney, a teacher’s assistant and long distance swimmer. But, this is definitely an area where we hope for even more opportunities.

5. People with Down syndrome do experience some legitimate challenges with learning, speech, health, etc. that require additional services and patience. This is where you can help.

Five ways you can value people with Down syndrome
1. If you know parents who have a baby with Down syndrome, tell them, “Congratulations” and offer to listen. Never say, “I’m sorry.” I actually waited three days to tell my friends about Andy’s birth. The reason: I was devastated about the diagnosis and terribly depressed about him being in the NICU, but I wanted to compose myself enough so that no one ever apologized. Even though I was sad, I fiercely loved him, and never wanted anyone to be sorry about him.

2. People with Down syndrome want friends and relationships just like everyone else. So, invite our children over for parties, play dates and library field trips to start friendships that last a lifetime. These relationships can be meaningful and fulfilling on both sides. Studies show that, like siblings, students at schools that include people with disabilities are actually more compassionate and improve their own learning by teaching.

3. Be understanding about challenges. Even though most people with Down syndrome can understand you, they sometimes struggle to follow complex directions or to communicate as quickly as they would like to. Take the time to listen, teach and be patient. You can also ask their parents if you are unsure about what adjustments you might need to make.

4. Use respectful language and avoid stereotypes of both children with Down syndrome and their parents. Parents don’t want to be called saints — it puts us on a pedestal that makes us feel different, and our children aren’t always “sweet.” In fact, sometimes they are downright cranky — just like all kids.
Most parents would also prefer that you use “people first” language, which means you say “a child with Down syndrome” rather than “a Down syndrome child.” The point is that the most important thing about them is not their diagnosis. And, of course, pretty much all of us hate the r-word.

5. Encourage people with Down syndrome to reach their potential. Sincerely congratulate their achievements, nurture their talents and invite them to be part of your community — at school, on the playground and at work. Isn’t this true for everyone, really?