Updated: Nov 4, 2019
World Down syndrome day is here! It's time for those of us with Down syndrome or who know someone with Down Syndrome to advocate and celebrate those with Trisomy 21. In honor of World Down syndrome day, here are 21 things that you can do for that extraordinary someone with an extra chromosome.
1. Educate Yourself
Down syndrome is not a disease and no one suffers from Down syndrome. Down syndrome is an atypical genetic condition in which the individual has 3 copies of the 21st chromosome instead of 2 like typical individuals. Down syndrome is the most common genetic anomaly in the United States with approximately 1 in 700 babies born with the extra chromosome . With that said, people with Down syndrome (referred to as DS from now on) do have a tendency towards a number of different medical issues ranging from hypothyroidism to leukemia. Although people with DS are more likely to experience medical issues, this doesn't mean that all individuals with DS do.
Take the time to reach out to someone with DS and ask them about their experiences. It is our job to help society become more open and inclusive. The only way that we can do this is by listening to the experiences of others, experiences which are usually completely foreign to our own. This opens up our minds to a world that we may not have known existed otherwise. Before I had a daughter with DS, I was grossly ignorant of the syndrome. I understood about the genetic abnormality but I never took the time to go into detail about what that meant for the individual living with it, although I had friends throughout my life who had DS. Listening to the experience of a person with DS might just help you reach a new and much needed understanding of the syndrome.
3. Check Your Pity At The Door
I'm thankful that society is becoming more inclusive but there is still much work to be done. There is a tendency in our society for a person to apologize upon learning that a parent has a child with DS. Whenever I tell someone new about my daughter's DS, I get the customary "I'm sorry". My reply? "I'm not. Why are you?" People with DS don't need our pity nor do they want it. A 2011 study showed that of the people with DS surveyed, a whopping 99% of them were happy with their lives! . If they aren't pitying themselves, then neither should we.
4. Be an Advocate
People with DS need someone who will stand in their corner and fight for them, not because they aren't able to do so themselves, but because we all need to support one another. Currently, there are only around 400,000 people in the United States with DS . Though that may seem like a substantial number, there are approximately 326 million people in the United States at this moment. Think of how powerful our voice could be if we joined as one in solidarity for the rights of individuals with DS.
5. Go Dancing
People with DS love music just as much as any one else (and if you ask my daughter she may say that she loves it more!). Going out to dance with a person with DS will be a fun way to get to know a new friend while also getting in much needed exercise. Some studies suggest that people with DS don't get enough exercise, which could lead to harmful effects like added weight gain and obesity. Dancing is a great way to combat this while having loads of fun!
6. Go the Gym with a Person with DS
On the note of exercise, you can encourage a person with DS to exercise more frequently by accompanying them to the gym. People with DS have a much greater chance of developing early dementia due to the increased oxidative stress of having an extra copy of chromosome 21. A 2016 study showed that exercising at least 30 minutes twice a week improved memory .
7. Wear Your Crazy Socks or Shoes!
World Down Syndrome Day is meant to be a fun day to bring attention to those who have DS. Wearing fun mismatched socks will bring attention to your feet and have people asking you "what's going on?" When they ask, you can tell them that the socks represent our unique differences just like people with DS are unique.
8. Post Pictures to Social Media
Let the world, or at least the virtual world, know that you are celebrating World Down Syndrome Day by posting pictures of you and your loved ones. Post pictures of your crazy socks, of your blue and yellow ribbons, of anything positive and fun that will get the attention of your social network to bring attention to DS.
9. Tell Your Children About DS
Our children are smart. They know when someone isn't "like them" and they will take our cues on how to respond to someone who they think is different. It is our job to teach our children that there are many different kinds of people in the world and each of us are unique and valuable. A good way to talk to children about DS is to tell them about what people with DS can do. Children won't understand things like chromosomes or DNA but they can understand playing and friendship. Tell your child that a kid with DS can do all the things a typical child can but it just takes a little while longer. Tell your child that a kid with DS isn't stupid and that he/she has feelings just like you. Teach your child to be a friend
10. Random Acts of Kindness
Everyone loves random acts of kindness. If you're in the line at Starbucks go ahead and pay it forward in honor of World Down Syndrome Day. Make sure to let the barista know about the occasion so that he can pass it on the car behind you!
11. Be a Friend
It's hard being different and people with DS know this all too well. The stares and the gawks I get when out with my children are indications that there is still much work to be done. Whenever my daughter gets old enough to understand that people are starting at her, I will tell her that they stare because she is beautiful. I mean look at her. She's beautiful right? (As is my boy) If you see someone with DS in your class or at the grocery, feel free to be a friend to him/her. That person just may surprise you and show you the true meaning of friendship.
12. Encourage Good Eating Habits
We all suffer from poor food choices at times but the consequences can be much greater for those with DS. As stated before, people with DS have a tendency toward low thyroid function which makes it easier for them to gain weight and harder to lose it. Encouraging proper eating habits can prevent unnecessary weight gain while optimizing nutrient and mineral intake. If your child with DS wants to eat out, go for the salads and vegetable soups instead of the burgers and fries. Your child will feel better and you'll thank yourself for it.
13. Accept that DS can be Challenging
In our efforts to advocate for the lives and quality of lives of people with DS, there are some who feel that we are glossing over the realities of DS. It's true that some people's experiences with DS will be more challenging than others. For example, my daughter was born with a congenital heart defect and required open heart surgery at 5 months old. A friend daughter's, who also had DS, didn't have any heart defects at all. While having DS or caring for someone with DS can be challenging, the vast majority of us are beyond grateful for our loved ones and only wish the best for them. With that said, a kind empathetic word can go a long way for someone with DS who's had a long day.
14. Look for Similarities Rather Than Differences
Although people with DS are different, as we all are, typical people seem to think that people with DS are alien. People with DS are just like you and me. They have the same wants, needs, hopes, and dreams. They need love and friendship just like anyone else. Try to look past the beautiful almond shaped eyes, and cute flattened nose, if you can, and see another human being who wants to enjoy life the same as you.
15. Celebrate the Differences
As human beings we tend to see and crave variety in everything. How odd then that we tend to shy away from and even shun those who are different from us? People with DS are different from typical people in that they have an extra chromosome but they are different from one another as well. In fact no two people are completely alike and we should celebrate those differences. There's no need to pretend that a person doesn't have DS just as there's no need to point it out that they do. Appreciate the person with DS' unique beauty and abilities and you will find yourself appreciating another human being just like you.
16. Ask Questions
If you want to know how a person with DS thinks, asks them. If you want to know their stance on an issue, ask them. Don't assume that you know what they believe because of their DS. Don't assume that they can't have their own opinions or beliefs because they may have cognitive delays. The only way for you to get to know a person with DS, is to put aside the diagnosis and get to know the person.
17. Be Gentle
As hard as it is to believe, there are still some people who think it's ok to use the word "retarded" when referring to a person with DS. These same people wouldn't even think to use any slurs against other people groups but they believe that it is ok to use this insulting word. No one likes to be insulted. People with DS know when you're being insulting and they can understand. It is never ok to use the "R word" or any other insult when speaking to a person with DS and using that word around a person with DS is insensitive. Try to be more gentle with your word and speech. A little kindness often goes a long way.
18. Slow Down
People with Down Syndrome can do anything that a typical person can but it usually takes more time. Slowing down will help you learn to start taking things more slowly and allow you to start enjoying life in a whole new way. Maybe the reason why people with DS are so happy is because they take the time to slow down and enjoy life.
19. Take Your Child With DS to a Naturopathic Doctor
Naturopathic doctors don't treat a condition or syndrome, we treat people. People with DS can benefit greatly from having a caring and compassionate naturopathic doctor overseeing their care. While there is nothing that can be done to "cure" DS or turn off the extra copy of the 21st chromosome, there is plenty that can be done to help mitigate the damage without the need for pharmaceuticals. Seeing a naturopathic doctor for your child's needs can help optimize their health potential greatly.
Don't take people with DS so seriously. They are individuals with unique senses of humor and love to laugh just as much as the rest of us. Laugh with them and laugh often because you will certainly have a great time being around someone with DS.
Don't stop learning, teaching, advocating, befriending or loving people with DS. Having someone with DS in your life is transformative, not only for them, but for you.
What are you going to do to celebrate World Down Syndrome Day? I'd love to know!
2. Skotko BG, Levine SP, Goldstein R. Self-perceptions from People with Down Syndrome. American journal of medical genetics Part A. 2011;0(10):2360-2369. doi:10.1002/ajmg.a.34235
4.Ptomey, L., Szabo, A., Willis, E., Gorczyca, A., Greene, J., Danon, J. and Donnelly, J. (2018). Changes in cognitive function after a 12-week exercise intervention in adults with Down syndrome. Disability and Health Journal.