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A Day in the Life with Down Syndrome: Down Syndrome Awareness Month

Once upon a time October was just like any other month. Our family participated in fun Fall activities and celebrated Halloween. Three years ago, however, October had new meaning. That was when we started celebrating Down Syndrome Awareness Month.

Most people are aware of Down syndrome but there’s a very good reason for Down Syndrome Awareness Month. People might think they know what Down syndrome is but the harsh reality for us parents is that few people are actually knowledgeable about this genetic condition. Just imagine living in a world where you have to justify why your child should even be allowed to exist. Yes the world is finally changing but there are still so many old school opinions and misconceptions.

October is a time for parents in the Down syndrome community to celebrate this often misunderstood genetic condition and educate others.  Yes, I chose the word celebrate. Contrary to popular belief (oh how we love people on the internet) we ARE happy and we adore our children just as they are! We spend the month of October trying to show what life with Down syndrome is like through pictures, words and actions. People are often surprised by what they learn. The truth is life with Down syndrome is nothing like what it used to be and nothing like how people expect it to be.

Meet Liam. He’s 3 years old. He loves animals, playing with cars and trains, music, books, playing outside and going to the park. His favorite food is salad with ranch dressing. Liam is a toddler tornado who can create a path of destruction in 3.5 seconds and is a little daredevil who loves to climb and jump. He has the most contagious smile, is full of love and the joy just radiates from him.  At first glance (and sometimes two or three) you might not notice that he’s rocking an extra chromosome.  I like to think that it’s because people notice the fact that he’s just like any other boy before they notice Down syndrome.

Down Syndrome Awareness Month

Liam does not have a fan page or a blog solely devoted to him because he is just one part of what makes our family a whole. I believe that he and his three older siblings are equally important and have value. My goal is not to glorify Down syndrome. I simply aim to show exactly what our life with Down syndrome is like and I aim to break those stereotypes and misconceptions.  I’m kicking off Down Syndrome Awareness Month by sharing what life is like with the little boy who rocks our world!

A Day In The Life with Down Syndrome

10:00 AM  Liam wakes up completely happy. He is an amazing sleeper who gets 12-14 hours of sleep each night!  The first sign of him being awake is the talking and singing coming from his room. As soon as he sees me he greets me with a huge smile, wraps his arms around my neck and starts patting my back. A hug from a child who has Down syndrome compares to no other.

Down Syndrome Awareness Month

10:15 AM It’s time for breakfast! Liam’s favorite meal is an egg, a cereal bar, fruit and almond milk.

10:30 AM We meet our friend to get some exercise at a nearby park. Liam happily settles into the stroller for several miles while we chat. After nearly 4 miles I let him out of the stroller so he can finish the last leg of the walking path. He grins and takes off!

Down Syndrome Awareness Month

11:15 AM We squeeze in a quick photoshoot. Liam is a brand rep which means he receives clothing for free in exchange for photos. He truly is a natural!

Down Syndrome Awareness Month

11:30 AM We get back in the car and drive to the school to pick up Liam’s older sister, Lily, from Kindergarten. He is always so excited to see her!

11:50 AM We spend a half hour at the park on Tuesdays, Wednesdays and Thursdays because there isn’t enough time to head home between Kindergarten pickup and preschool drop-off.  The kids play on the playground and eat a small snack at the picnic table.  Liam is always very social and has no problem keeping up with the “typical” kids.

Down Syndrome Awareness Month

12:30 PM On Tuesdays, Wednesdays and Thursdays Liam goes to preschool. He receives all of his therapies (Speech, OT and PT) at preschool now. Prior to starting school a few weeks ago all of his therapists came to our home from birth until age 3. It was a HUGE transition for all of us but he is going to thrive in a school setting!

Down Syndrome Awareness Month

3:00 PM We pick up Liam from preschool. As soon as he spots us he smiles and runs into my arms. We are always so happy to be reunited!

Down Syndrome Awareness Month

3:30 PM Liam has one of his yearly appointments and gets a clean bill of health! People who have Down syndrome CAN be perfectly healthy. Liam certainly is! Each year he goes to 5-6 annual appointments. It may seem like a lot when they are scheduled all at once but preventative medicine is key!

Down Syndrome Awareness Month

4:00 PM It’s time for a nap. Liam does log in a lot of hours of sleep overnight so his nap is short. He definitely still needs his nap to recharge!

5:00 PM Liam loves to play outside with his three older siblings! If he could spend the entire day outside he would. If it’s raining he plays inside with the large number of sensory toys that fill our home.

Down Syndrome Awareness Month

Down Syndrome Awareness Month

6:00 PM It’s time for dinner! Liam loves pasta and salad. When we go out to eat he always wants salad…even on the rare occasions when we get fast food!

Down Syndrome Awareness Month

7:00 PM One of the disadvantages of having older siblings is having to attend all their activities. Most recently Liam has been working the waiting area at the dance studio while his sisters dance. He walks back and forth for an entire hour charming everyone he passes.  Lots of hellos, goodbyes, hugs and smiles are shared.

8:00 PM Bath time is another favorite in Liam’s day. It’s not a success unless more water ends up out of the tub than in it!

Down Syndrome Awareness Month

8:30 PM Liam spends some time playing, hanging out with his daddy and chasing our pet rabbits. It’s good to get rid of that excess energy before bed!

9:00 PM Liam’s day has come to an end! He brushes his teeth and cuddles with me while I read him a book.  He curls up in bed with a few of his favorite books and sleeps through the night.

Down Syndrome Awareness Month

This was just a sample of a typical weekday for Liam paired with pictures from our week. On the days he doesn’t have school he has playdates, visits family, goes to the zoo, visits our horse at the stable, goes to the library and just spends more time playing at home. Oh, and did I mention potty training?!? We are often on the go and Liam adapts quite well. If there’s anything that you got from this post I would hope it’s the realization that Liam is living life just like any other child his age!   People are most surprised when they realize that Liam leads a very typical, happy, healthy life. THIS is Down syndrome!

Down Syndrome Awareness Month

Down Syndrome Awareness Month is about celebrating Down syndrome and educating others. But it’s also about one more thing: Normalizing Down syndrome.  Our kids are out in the world. They aren’t living their lives in institutions or being hid away in their homes by embarrassed parents. They are working, modeling, attending college, winning Emmy’s and getting married. And they have just as much of a right to be here as you and I do. They are trying to live their lives like any other and just want the world to accept them for who they are. 

Down syndrome is becoming more mainstream each year and that’s the way it should be. An entire army of devoted parents works tirelessly year round to share the REAL truth about Down syndrome and kicks it up a notch during the month of October. Instead of being annoyed by another awareness month take the time to learn a REAL fact and be a part of the change. Forget what you think you know or what facts you read. Get the truth from the real experts on Down syndrome: The parents who are living with it and the people who are rocking it!

Happy Down Syndrome Awareness Month from one family who is rocking it to you and yours! I’m here to tell you that Down syndrome is not scary. It’s simply misunderstood. I am just one proud mama making one big plea: Please don’t limit our kids. They are absolutely worth getting to know and they are capable of more than you realize!

 

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Stefanie and Liam are on a mission to help change the world! Celebrate Down Syndrome Awareness Month with them on Lexie Loo, Lily, Liam & Dylan Too and on Instagram.

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