Our Five Ring Circus: What We REALLY Want You To Know About Down Syndrome

Tuesday, November 3, 2020

What We REALLY Want You To Know About Down Syndrome

Down syndrome

Down Syndrome Awareness Month has come to an end. Most people are aware of Down syndrome, but the majority of people don't understand exactly what it is. So many people still view it as a tragedy or something to fear. What they can't allow themselves to see is that a person with Down syndrome does have differences - just like any other person - but they truly are like every other person on this planet...just with an extra chromosome!

I advocate for Liam and his peers through inclusion. I share about life with Down syndrome by simply sharing our family. Liam does what we do, goes where we go, and is very much an intricate part of our family unit and our community. Down syndrome is a part of him, just like his big blue eyes that are flecked with Brushfield spots or his joyful smile, but we refuse to let it define him.  

I spent the month of October advocating for Liam by sharing how he has impacted the lives of those around him. I have been advocating for over 7 years, but my ways have definitely changed. I used to share facts, but now I just let Liam and our experiences lead the way. I always share from my heart, so I will let Liam's siblings and grandparents tell you all about life with Down syndrome, before wrapping it up with a few things I really want you to know about Down syndrome.

If you want to know how you should treat a person who has Down syndrome, just look to their siblings for guidance. My own children would tell you these things: Liam is loved. Liam is valued. Liam is appreciated. Liam is included. Life with Down syndrome has taught them dozens of life lessons, which made them kinder human beings. 

According to a very popular survey, more than 96% of siblings indicated that they had affection toward their sibling with Down syndrome, and 94% of older siblings expressed feelings of pride. Among older siblings, 88% felt that they were better people because of their siblings with Down syndrome, and more than 90% plan to remain involved in their sibling’s lives as they become adults. Yet despite those findings, the critics still say Down syndrome ruins the siblings' lives.

I can tell you about how Liam's relationship with his siblings over and over again, but it makes more of an impact if it comes directly from them. I asked Dylan, Lexie, and Lily to write something for Down Syndrome Awareness Month, and their responses made me cry. I will be sharing direct quotes from each of them to show you how Down syndrome has affected their lives. 

The Lucky Few

“Having a little brother with Down syndrome is not any different than having a little brother without a disability. Liam is not only a great little brother to me, but he is also my best friend. Liam is just an ordinary boy! He likes playing with toys, playing outside, watching movies, and so much more. Liam is no different than anybody else, and I am so glad to have him as my little brother!” -Dylan, age 15, oldest of 5 kids

Down syndrome Awareness Month

“Liam has taught me a lot over the years! He has taught me patience, kindness, and most important, unconditional love. I didn’t know you could love a person THAT much until I met Liam! He is a ray of sunshine, and can brighten up your day with one smile. He is a ball of energy, and there is never a dull moment with him. Liam is my brother, but he is also my buddy. He will always be my Liam!” - Lexie, age 13

Down syndrome blog

“People think Liam isn’t normal, but he really is. There’s so much more to him than just having a disability!

Me and Liam have a lot in common. We both love the same red popsicles, and eat them every day. We’re in the same school now, and I get to see him every day at recess and after school. At recess, I always run up to him to say hi, and he says hi and gives me a big hug! I love having him at school with me.

And guess what? Liam is really popular in school, and everyone we pass in the halls says hi to him. Everyone knows who he is and loves him! I think it’s because he has the biggest happiest smile!
My mom says Liam is more alike than different, and he really is!”
-Lily, age 9

Lily and Liam are 2 years apart. They are the closest in age of all of our kids. When Liam was born, she was only 2, so she didn’t understand what Down syndrome was. To her, Liam has never been anything different...just a little brother like any other!

siblings and Down syndrome

Coen might not be able to tell us about Liam yet in sentences, but I wanted to include him in my Down syndrome Awareness Month posts. I want to share how Down syndrome POSITIVELY impacts him.

To Coen, Liam is the cool big brother, and Coen doesn’t see him as being different. He wants to do everything Liam does, and Liam’s quirks are becoming Coen’s quirks. (Tapping plastic keys on a tablet screen for example.)
They get into scuffles like any other set of siblings, but Coen thinks Liam is the funniest kid around, and Liam watches over his baby brother. (Swipe to the last picture!)
Liam and Coen are an adventurous duo, and they love to explore together. They also love to create chaos together, which has earned them the nickname Double Trouble. I love watching them interact with each other!
The biggest impact has been with Coen’s growth and development. We spend countless hours working with Liam, and it benefits Coen, too. He absorbs it all like a sponge! At 1 1/2 years old, Coen has mastered running, jumping, climbing, using a small trike and scooter, and using a wobble board. He says so many words, knows animal sounds, is beginning to count and sing songs, and has mastered his fine motor skills. It’s all from learning alongside his big brother!
I know a time will come when Coen passes Liam up in height, speech, and development, but one thing will never change - Liam will always be his cool big brother, and one of his best friends!

big family blog

This post wouldn't be complete without the Liam's grandparents' perspectives, since they are a big part of his life!

First I want to share a special story with you. My parents showed up at the hospital with our three older kids shortly after Liam was born. They knew Liam was a boy, but we didn’t share the pediatrician’s suspicion with them over the phone. When they walked into the room, Liam was out for more testing, and my parents saw my tears and knew something was wrong. When I told them the doctor thought he had Down syndrome, my mom’s reaction was one of utter shock. My dad, however, didn’t miss a beat. He just immediately smiled, and he said, “Okay, where’s my grandson? I want to meet him!”
From the moment my dad and Liam met, they were smitten with each other, and their bond has only grown stronger over the years. My dad simply sees Liam, and not Down syndrome, and Liam absolutely adores his Papa!

“When I first held Liam on the day he was born I knew that we had been given a special gift. I bonded with him instantly and that bond has grown stronger through the seven years that he has been with us. His smile brings me joy. He can be cantankerous at times but his smile and love certainly makes up for it. He is like any other of my many grandkids and when I'm with him I thank God for this precious gift.” -Liam’s Papa, Darryl

Down syndrome awareness

“When I worked in an assisted -living facility, the Pastor who visited the residents congratulated me on the birth of my grandson. Then he said ‘I'm told he had Down Syndrome.’ And then he just looked at me and said ‘They are better than us, you know.’ He is correct....these beautiful people do not judge nor hate. Indeed he has challenges but he simply works hard until he masters those challenges. He is a happy, lovable little boy. He has a fascinating mind....he remembers everything! Thank you, Liam, for the blessing you are and the incredible journey you have taken us on.” Arlene, Liam’s Nana

My mom was every bit as shocked as we were when we found out Liam might have Down syndrome, but he quickly had her wrapped around his tiny finger! Liam absolutely loves his Nana, and he greets her with a big hug and smile every time he sees her!

Down syndrome blogs

“Liam taught me that it's ok to be yourself...no matter what. He doesn't worry about what people think ...he loves unconditionally...and his love is contagious!
I see him as one of my 5 grandchildren...he laughs, he cries, he dances, he hugs, he plays, he goes to school and sometimes he can be an instigator....he fits in perfectly with our family....and I wouldn't have it any other way. ” -Kathy, Liam’s MawNaw

Life with Down syndrome

I advocate for Liam during Down syndrome Awareness Month, but truthfully I never stop. The world NEEDS to change and become a kinder, more accepting place. To wrap up a month of advocating, I want to tell you what I REALLY want you to know about Down syndrome.

This is Liam. He is a 7 year old boy who loves playing outside, Blippi, Toy Story, Boss Baby, Moana, playing musical instruments, and vehicles of all kinds.
Liam has an endless amount of energy, is more active than most people, and his physical strength is very surprising considering his tiny size. (Just ask Dylan, who repeatedly gets his butt kicked while wrestling his 43 lb brother!)
Liam is very healthy, and doesn’t have any conditions associated with Down syndrome. He has quite a few yearly appointments to make sure he stays at optimal health!
Although he does have a speech delay, his receptive language is just like any other child his age. Please don’t talk down to him or treat him like a baby. I assure you that he understands you perfectly!
Liam is in 2nd Grade, and goes to public school. He belongs there. He is smart, and he CAN and DOES learn. He has the ability to come up with creative solutions for any problem, and often leaves us feeling stunned over something he figures out. He definitely thinks outside the box!
Liam is very social and loving. He has more compassion and empathy than most adults (please don’t disregard emotional IQ). He is more accepting than most people, and he just LOVES everyone. He has the ability to brighten days with his beaming smile, incredible hugs, and a “Hiiiiiiiii” that lasts about 5 syllables and makes you feel like the most special person on Earth.
Just like any other child, Liam experiences every emotion. There are challenges that come with raising a child who has Ds, but there are challenges to raising ANY child! The majority of our challenges, however, do not exist within our home - they exist in the outside world with people who refuse to accept people who have Down syndrome or believe they have a right to live.
We have hopes and dreams for Liam, just like the rest of our children. We envision him living a happy life of independence doing something he enjoys. We envision a life filled with choices and meaningful relationships. And we will do everything we can to help him get there.
Liam is not Downs or a Down’s child. He is a person who HAS Down syndrome. It is only a tiny fraction of who he is. And he is certainly not the R word. If you are still using that word, you haven’t progressed as a human being, and have a lot of work to do.

Liam has worth. He is ABLE. He is a valuable member of our family and our community. Above all, please remember that he is someone’s child, brother, grandson, nephew, cousin, and friend. He is loved SO MUCH and he certainly belongs in this world! Always look past the diagnosis and see the person!

Down syndrome

What My Family Really Wants You To Know About Down syndrome

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