It seems impossible now, but before my son was born, my knowledge of Down syndrome was limited to a few volunteer experiences in high school and the 1980s drama “Life Goes On.” Fast forward eight years, and it seems half of my friends are connected in some way to Down syndrome. Everywhere I go, I notice children and adults with the characteristic fea- tures of Trisomy 21 (an extra copy of the 21st chromosome). People with Down syndrome are in almost every community, thriving and going about their lives. How did I not notice before?
The month of October is Down Syndrome Awareness Month and it’s a great opportunity to clear up misconceptions
about the condition and show others how special and valuable our children are – as well as how normal they are. No, they aren’t angels sent from Heaven who are happy all the time. They’re individuals who have feelings and moods just like anyone else (although most are pretty darned charming). As a special needs parent, you’re an ambassador for your child 365 days a year. But here are some ways you can make even more of a difference during Down Syndrome Awareness month.
1. Spread Facts Far and Wide
Roughly 400,000 Americans have Down syndrome and about 6,000 babies with Down syndrome are born in the U.S. each year, accord- ing to the National Down Syndrome Society. That makes Down syndrome the most common genetic condition in the U.S. Even so, there are still a lot of myths and misinformation surrounding it.
If you’re active on social media, consider pulling together 31 different facts about Down syndrome and sharing one each day along with a brief explanation of your family’s personal experiences. If you don’t indulge in social media, consider adding a single fact to your email signature line at work. You may change your fact daily, or perhaps once a week. Either way, you’re spreading awareness. You might be sur- prised by the number of conversations you can start simply by sharing a fact with friends and colleagues.
2. Celebrate Your Child
Nothing makes a bigger impact on people than meeting our kids and getting to know them. That isn’t always possible in real life, but you can make a video about life with Down syndrome: what it is, what it means for your child and your family, and some of the special experiences you’ve had. Consider letting your child take over your social media for the month, posting funny pictures or moments with a quick explanation. Overshare milestones such as sleeping more regularly, healing from a surgery, or new communication skills. By sharing these moments with others, you are not only helping to spread awareness, but you are also creating a digital memory book that will allow you to look back on these moments and remember the feelings that you had at that exact time.
3. SHARE YOUR STORY
If you have a child with Down syndrome, you probably didn’t make it too far through your child’s first year before you received the dreaded question: “How did you feel when you found out your child had Down syndrome?” There are no easy answers to that; feelings are expectedly complex and fully textured. However, when you tell your story to others instead of passing it off with a quick comment, you’re giving them a small window into your experiences – what you thought then and how you feel now. Parents of a child with disabilities don’t want pity. Instead, we want others to see our kids as we do, celebrate their small victories, mourn their setbacks, and ultimately be a cheer- leader for them. As you share your story, you are building compassion for kids and adults with Down syndrome that can have a lasting ripple effect.
4. Words and Language Matter
Few things get me more riled up than the “r” word. Retarded is a loaded and offensive term, especially when it’s bandied about like an insult or joke. I know most people “don’t mean anything by it,” but for those of us who love someone with an intellectual disability, it’s the equivalent of other words that offend people of a certain cultures, races, or sexual orientations. The “r” word is a slap in the face to children and adults who have to work twice as hard every day to learn, grow, and master skills that others take for granted. People with Down syn- drome just want to fit in and be treated like everyone else. There is a national campaign called “Spread the Word to End the Word.” Start under your own roof and work outward from there.
Also, try to use “people first” language when talking about your child. People have Down syndrome. They don’t “suffer” from it. My son is not a “Down’s kid.” He’s a kid who happens to have Down syndrome. Individuals with disabilities are people first, so we should always talk about them that way. The emphasis should be on the individual, not the disability.
CORRECT: A baby or child with Down syndrome • INCORRECT: A ‘Down syndrome child’ or ‘Down’s baby’ 5. Tell People How They Can Help
Let your friends and family know how they can help. They can volunteer with Special Olympics or local organizations that provide sup- port and activities for people with Down syndrome. They can attend performances and support businesses by young people with Down syndrome. They can also donate to the National Down Syndrome Society, where contributions help to fund ongoing research into Down syndrome. Have questions about the charity to which you’re donating? Check out CharityNavigator.org for facts such as the impact of individual nonprofits.
Helping others see the challenges and beauty that come with Down syndrome can be an everyday affair. But Down Syndrome Awareness Month is a great opportunity to amp up your outreach and add your voice to the chorus of parents making a difference for their children.
For more info, visit www.wondermoms.org