Down Syndrome Awareness: Answering Your Child’s Questions

Down Syndrome Awareness | Twin Cities Moms Blog

Everywhere we go, all eyes are usually on us.  Sometimes, I like to try to guess what people are thinking.  I look nothing like my children, so I think maybe they are figuring out if I’m the mother or the nanny.  I also get the “you sure have your hands full” look with my three boys.  And I’ve been told that I look young, so I get those not-so-kind looks too.  But I know what people are staring at – my youngest son, Ronin.  He has almond-shaped eyes, a cute little button nose and the most magnetic smile in the universe.  You are probably trying to figure out if he has Down syndrome or not… Well the answer is… YES, yes he does.  

Our experiences out in public are different, to put it lightly.  I’m still in the process of deciding if I like the attention or not in public.  It honestly changes everyday.  While the majority of our encounters are kind and quiet, there are times we have experienced negative and overly positive encounters (yes there is such a thing).  Just recently, we had an encounter in an eating area at a popular grocery store.

Do you ever have that feeling that someone is talking about you?  Yeah…. try like 20 people at once.  A room full of adults, staring at us.  Not one smile.  I could read multiple lips with blank stares that read “Down syndrome,” and one family with children would not say hello back to my son, who had gone over to say hi to their child sitting in a high chair.  These are the experiences that break my heart as a mother and as a human being.  If I were a superhero, I would have climbed up on the table in the eating area and in my supersonic, hypnotizing voice shouted from the top of my lungs, “This is Ronin, yes he does have Down syndrome and he is awesome!”  

Now, the overly positive encounters.  What would you do if you saw your favorite celebrity?  Probably ambush them, right?  I feel like my son is a celebrity at times or an attraction at the zoo.  We’ve had people and whole families pretty much ambush us and corner us to where we couldn’t escape the encounter, telling me how they LOVE people with Down syndrome.  Their intent isn’t negative in nature, but it causes discomfort.  But my son isn’t Down syndrome, but is Ronin first.  Again, if I were a superhero, I would have taken my son and flown away faster than the speed of light.

But I possess no superpowers as a special needs mom, except for the power of education and the power to see my child’s limitless abilities.

Down Syndrome Awareness | Twin Cities Moms Blog

So, how do you think you react and how are you teaching your children to react to others who are differently-abled?  Children are keen at noticing differences.  My seven-year old son would tell me, “Mom, that man has Down syndrome just like my brother,” when he was only five years old.  My boy’s grandma is also in a wheelchair due to Multiple Sclerosis.  Grandma uses a wheelchair and it’s normal life for our family.  But most children have no exposure like we do in their lives.  I bet it rarely comes up at the dinner table and I bet it never came up at your dinner table growing up.  But what happens when your child sees someone different out in public or at school?  What will their questions be and how will the scenario play out?  Will what you say create a negative experience for your child and also to the person who is differently-abled?

Down Syndrome Awareness | Twin Cities Moms Blog

The most common reaction is, “It’s not polite to stare.”

I used this many times growing up with my younger brother and even my kids before Ronin was born.  Very true, but I am here to tell you that there can be a polite way to stare and it may be more than looking from a distance.  When your child asks why my Ronin looks different, what will you say?  Will you say he has different features because he has an extra chromosome?  Will you say he has a disability or is handicapped?  Will you say he is very sick or has a disease?  What if you didn’t have to focus on the differences and only focus on the similarities?  When your child asks why he looks different, you could say, “Well, I see he has two eyes, a nose and mouth like you.”  When your child asks if he is disabled, you could say, “He looks to be running away from his mom just like you did when you were his age.”  When your child asks you if he is sick? Please say, “No.” Down syndrome is not an illness or disease.  Instead say, “He looks to be very healthy, he’s not coughing or sneezing.”

I want you to tell your children that he is just a kid like them.

We all have our own strengths and weaknesses as human beings, his will be different than others, but he has both like all of us.  The similarities are endless with our kids!  Ronin can operate a cellphone way too well for his age, dips all his food in ketchup, loves the library, knows all the songs to Moana and Trolls, hates veggies, can hit a ball off a tee, has a good arm, says “no” to me all day long and is a typical three-nager.  While we may have to overcome different obstacles in life than most people, WE ALL will have obstacles none the less.  We all just want the best for our children and want to help them grow into the best human being they can be. 

When your child asks these questions, it opens up the opportunity to discuss the diversity of all human beings.  Everyone deserves to be treated with dignity and respect.  And parents, it all starts with you.  Just think if ONE of those adults in the cafeteria would have given us ONE smile, I wouldn’t have had to write about it right now.  All it takes is ONE  kind person who holds the door at Target and says I’m doing a good job to prevent me from coming home from Target sobbing because someone said something mean or rolled their eyes at us.  At school, all it takes is ONE child who includes a differently-abled child during their school day for them to go home and tell their mom and dad that they had the BEST day ever!  

These reactions are nothing special; they are normal reactions that are given to typical people daily.  But for my child and my family, they are so much more.  They shouldn’t have to be more, but for now they are. I know I will have to fight and advocate for my child for a very long time just to reach the edge of equal. So I am asking you, the parents to typically-abled children, to please help me, help us.  It all comes back to the golden rule, “Treat people the way you would want to be treated.”  That’s it. Very simple.  I just ask that this is a lesson you will keep in mind to teach and remind your children of when that instance comes up where they meet someone different than them.  It will happen, I can guarantee you that.

Down Syndrome Awareness | Twin Cities Moms Blog

As Maya Angelou said, “In diversity, there is beauty and strength.”  In our case, my child with Down syndrome has shown all of a us a beauty we never knew existed, and I have witnessed a strength in him that goes far beyond what I thought strength really was.  I was meant to be his mom and hope for an equal path on this adventure called life. 

Down Syndrome Awareness | Twin Cities Moms Blog

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