Today is a special day for me. I asked my dear friend, Stephanie, to share with us some of her experiences and expertise being a mother of a child with Down syndrome. Stephanie is one of the most amazing mothers I have ever met with three adorable, intelligent and witty children. Stephanie has served in many organizations and board positions supporting children with Down syndrome and their mothers. She is also the author of a nationally recommended prenatal book about Down syndrome called Understanding a Down Syndrome Diagnosis. Even if you don’t have a child with DS, you may know someone. Stephanie also shares with us how we all can value those with DS. This is Stephanie who simply said…
When my husband and I found out that our son Andy was born with Down syndrome 10 years ago, we were devastated 23 year olds who were terrified about the future ahead of us. It didn’t take too long for the news to settle in and for us to take comfort in the ear-to-ear smiles of our baby and the scent of his wispy hair.
Now, that news has become a remarkably ordinary reality. Therapy schedules are simply part of our routine, and we go on vacations, referee sibling squabbles and ride bikes in the neighborhood just like everyone else. Don’t get me wrong, we work hard to help Andy overcome his challenges, but it’s just a part of life. However, I must admit that it has given us a clarity that has forever changed the way we see the world and the people in it.
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?
» Tell me… What do you think about Stephanie’s list? Share with me some of your experiences with Down syndrome or people you know with DS.