Category Archives: Down Syndrome Awareness Month

Meet Leo

 

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Meet two-year-old Leo! This handsome guy is here today to help us celebrate day 20 of Down Syndrome Awareness Month. You can find his mama, Hillary on Instagram and Twitter as @hillaryschu and his dad, Michael, on Instagram as @goodbeerhunting and Twitter as @mpkiser.

 

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What are some things Leo thoroughly enjoy doing?
Leo loves to watch tv, play apps on the phone, and read books. He loves to run around the park, kick balls, and chase people. He likes to dance and play jokes on people. He loves to blow kisses and give high fives.

What are his favorite movies, games, or books?
Leo loves books—his favorites change often. He’s currently really into “The Book With No Pictures,” “Along a Long Road,” and “Pigeon Wants a Puppy.” His favorite TV shows are Curious George and Sarah and Duck (and he likes Mother Goose Club on YouTube). Leo likes pretty much all games. Right now we are playing My Very First Games – First Orchard and Thinkfun’s Roll and Play Board Game—games where he has to take turns and follow simple directions. He has a pretty long attention span for a toddler.

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What are a few things Leo is really good at?
Leo is great at matching and puzzles. He’s a good mimic and we’re working on his ABCs (he knows them just can’t quite say them all yet). He can identify colors, name all of his family members, and feed himself. He’s done a little modeling and he’s really good at it. He follows direction really well. He also does the best frog impression that you’ve ever heard.

What is the most wonderful part of knowing them?
Everyone loves Leo—joy just pours out of him. From the minute he was born, people have been drawn to him. Strangers smile at him, the girls at the grocery store fawn over him, everywhere we go, someone stops to talk to him. It has always felt like he was important—bound for something great—and I love just being near him, let alone helping to shape the man he’ll become.

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What is something you don’t think many people know about Down syndrome?
When I first found out in utero that Leo had Down syndrome, I was worried that he wouldn’t look like me or my husband. That he would look like “Down syndrome”—whatever I thought that was. But Leo looks JUST LIKE ME. Looking at photos of other parents and their kiddos with Ds, you can always see the resemblance.

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Check back tomorrow as we continue celebrating Down Syndrome Awareness Month or click below to read all of our previous posts.

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Meet Macyn & August

 

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I am thrilled to have Macyn & August with us today as we celebrate day 18 of Down Syndrome Awareness Month! I have been following this sweet family for the last few years and am consistently inspired by mama Heather’s posts. I remember the joy they shared when Truly (their middle child) and August joined their family through adoption and the hashtag #theluckyfew came about.  (Seriously, check out the hashtag. It’s amazing.) And the super exciting thing is that Heather is set to release a book about their journey in March 2017! Click over to her website to check out The Lucky Few book and to read her blog. You can also follow this crew on Instagram at @macymakesmyday. Thank you, Heather, for celebrating with us today!

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Do your kids have a favorite cartoon or movie character?
All the kids are crazy about Disney everything right now. We have annual passes to Disneyland and all they want to do is go to the shows to see the characters and walk around looking for the characters. August is especially obsessed with Goofy, which Macy loves them all.

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Who do they love to spend time with?
Macy loves to spend time with almost anyone of her family or friends. She LOVES being with people, it gives her life. She is always inviting people over to hang out and everyday asks who we are going to see. Macy especially loves her grandparents, aunties, uncles and cousins. Her cousin Kalli, who is closest to her in age, is her very favorite person to be with.

August, on the other hand, just wants to spend time with his dad and me, and his sisters too!!!! He gets shy and reserved and even nervous around anyone else. In his ideal world, we would be touching at all times, or at least always in the same room!

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How are they similar to and different from one another?
Macy and August both have Down syndrome, yet they could not be more different. Macy is our little miss cautious. This makes her less willing to try anything new. She is huge on expectations and when she does not know what to expect, or her expectations are not met, she gets bummed out and can tend to shut down (I’m the same way!). August is mr. throw caution to the wind. He is daring and bold and willing to try everything (except food!). He is also very high drama (can you say “drama king”?) while Macy is calm, and even when things feel stressful or don’t go her way, she never responds with dramatic outbursts. Because they both have Down syndrome we see some similarities in development etc., but really, they could not be more different.

Then there is our middle daughter, Truly, who does not have Down syndrome or any other kind of different ability. Truly is a born leader and is pretty sure the only way to do everything in life is her way. Sometimes her siblings put up with it and let her lead the room, sometimes there is plenty of bickering as Macy and/or August get frustrated with her inability to allow them to be in charge:). Truly is highly emotional and loves to take risks, just like August.

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What is the most wonderful part of knowing your children?
Knowing my kids with Down syndrome is like having a front row seat to a kind of magic. They have shown me that when we take the ups and the downs, the good and the bad, the celebrations and the sorrows, the bravery and the fear, and we intermingle them until we can hardly tell them apart, what we get is a new kind of beauty, a new kind of reality, that I have not found to exist anywhere else.

What have you found to be good resources for learning more about Down syndrome?
The best resources are people who have Down syndrome or have a loved one with Down syndrome. Find us on social media, ask questions, let us become a part of your normal day to day lives. There is no better resource out there.

 

Check back tomorrow as we continue celebrating Down Syndrome Awareness Month or click below to read all of our previous posts.

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Meet Tessa

 

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Today we are graced with the sweet smile of 21-month-old Tessa Mae. Tessa’s darling, little pigtails always catch my eye on Instagram and bring a quick smile. Her mama, Cassandra, shares touching words with us as she reflects on life with her darling girl. You can follow their journey on Instagram at @cassandraallred. Happy 17th day of Down Syndrome Awareness Month!

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Tessa is the adventure we never knew we wanted, and she’s been surprising us since the moment we discovered she would have a little (extra).  Our initial thoughts of how our life would change with Tessa in it has turned out to look NOTHING like what we first imaged. Tessa brings as much, if not more, joy into our home as any of our other three children do. She is a light in our family, and we all adore her.

Tessa loves following her sisters around and getting into her brothers Legos (she knows the exact shelves that are off-limits and shoots directly for them)… Tessa loves her 8 year old brother the most and he often sends her into gut-laughing fits. Tessa loves to play, laugh and get tickled. She loves people and wants to be close to her family members by cuddling in and sucking her thumb. Tessa loves food, and eats anything and everything her siblings are eating. She’s learning to sign (and picking up new ones weekly) and loves to scream “Mama!” when she sees me across the room. Tessa is a people magnet wherever she goes, and loves to study new faces and play with other babies. Tessa loves baby dolls and likes to point to their eyes, ears and nose. Just like her siblings, she likes to nap in her own bed with her favorite blanket, she likes the straw cup best, and if I kiss her too much she bats my face away.

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I guess what I’ve realized most over these last 20 months is that life just feels normal with Tessa in it. Down syndrome didn’t collapse our world like I initially thought it would. Down syndrome hasn’t effected our quality of life or the love we share or the fun we have. In fact, quite the opposite. Down syndrome opened our eyes.  We want to celebrate and understand others differences and love them for it. In a world that feels so homogenous in style, fads, and culture, it’s a refreshing new perspective. I feel deeper and I love harder. I don’t take as much for granted. I want the world to know that Tessa is just a little baby girl, who loves her siblings, chocolate chip cookies, and cuddling with her blanket on her daddy’s lap. She also happens to have almond-shaped eyes and a third copy of her 21st chromosome- but don’t we all have something that make us unique? Life doesn’t let anyone off easy. Tessa will want and dream and become, just like any other child. And we can’t wait to be along for the awesome ride.

Finding and connecting with other families was my absolute saving grace while pregnant with Tessa. I mostly found them through social media. Because that was such a great sense of comfort to me, I share Tessa publicly on Instagram hoping that I can be a happy resource to a new family out there facing a diagnose that feels terrifying and unknown. Find our family at @cassandraallred.

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Check back tomorrow as we continue celebrating Down Syndrome Awareness Month or click below to read all of our previous posts.

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Meet Tessa Jo

 

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We are officially past the half way mark during Down Syndrome Awareness Month. Can you believe it?! So many more awesome kids to meet! Today I’d like you to introduce you to five-year-old Tessa Jo.  I connected with Tessa’s mom, Becky, a couple years ago through the magical world of Instagram (really, it’s by far my largest support network). Shortly after finding Becky, I discovered she had written a sweet book called  47 Strings: Tessa’s Special Code that explains the uniqueness of Down syndrome in a way children can understand. It’s beautiful. You can now follow Tessa Jo’s journey on Becky’s blog and on Instagram as  @dear_tessa. Thanks for joining us again today, and have a wonderful Sunday!

 

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What does Tessa Jo love to do?
Tessa really loves singing and dancing to Taylor Swift songs!  She also loves being outside, playing with her dog and her chickens and going for rides with her dad on the 4-wheeler.  Her favorite indoor activities are doing crafts, helping mommy in the kitchen and playing board games. She loves to eat, but I would say ice cream might top the list of all-time favorites.

What are her favorite movies and books?
She is a lover of Disney princesses; especially Elsa (shocker, I know.) Her current favorite movie is The Peanuts Movie.  One of her favorite books to read before bedtime is called Tickle Monster by Josie Bissett.

What do you think Tessa would do if she could do anything for a day?
If she could design a day by herself, I can’t even imagine what we would do…my guess would be that we would eat a big breakfast, then paint her nails or go to get them done at a salon.  Next I think she would love to go to a movie theater, get a great big bucket of popcorn and watch a movie. Then I think we would make cookies and head outside to play the afternoon and night away after that.  Of course I am sure she would love to close out her day by sleeping in my bed.

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How is Tessa both similar to and different from her siblings?
Tessa is incredibly patient and laid back most of the time.  This is where she differs from her younger, and much less patient, sister.  Tessa’s nurturing disposition is something that her little sister is picking up on.  At just twenty months apart, her younger sister really looks up to her and idolizes the things Tessa does; like going to school, riding her bike and writing letters.  However, it is Tessa’s little sister that is teaching Tessa more life skills in a way that I can’t; and I think that is largely in part to their closeness in age and how they relate in that aspect.  Tessa also idolizes her older brother who is a middle schooler now.  Tessa and her brother have very similar personalities.  Tessa has taught him a lot about recognizing and respecting differences in all people.  He is helping her learn patience with school work and she really loves when he reads books to her.

What do you want everyone to know about your daughter?
I wish everyone knew how capable Tessa is; that her diagnosis does not specifically define or limit her.  I think she is changing that in the way others see her by simply doing the things that all kids do and breaking down stereotypes in her everyday life.  The most wonderful part of knowing her is how much she has opened my eyes to a world I paid so little attention to before her.  She has been through so much medically, and she has really put life into perspective for me.  Tessa faces challenges and obstacles with a lot of courage and compassion. She shows me that it is okay to not get something right the first time; that the journey to achieving our goals happens in stages.  I always think about the moment we heard her diagnosis; and how I would give anything back to that moment now, knowing what I know.

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Check back tomorrow as we continue celebrating Down Syndrome Awareness Month or click below to read all of our previous posts.

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Meet William

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We’ve got another birthday today! William is celebrating turning eight! His mom, Elena, is sharing a few beautiful thoughts about her son today for day 15 of Down Syndrome Awareness Month. You can follow Elena and William on Instagram as @elenakathryn and on Elena’s blog Monkey Bear and Buddy.

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William’s favorite people are his two sisters. Just like any other brother, his favorite activity is tackling and wrestling them! William loves an adventure and this summer we went to Santa’s Village. William rode on every ride and swam in every pool. He is a fun loving guy but definitely likes things his way. William is not a fan of waiting and that can make some outings a little hard. Along with Down syndrome, William has apraxia so his speech can be very hard to understand but his big sister understands almost everything he says. When William is overwhelmed with frustration, his big sister is often the only one who can calm him down.

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William has taught my daughters to not make snap judgments of other children. He teaches them to be in every moment and not worry about what tomorrow will bring. He teaches them patience. As they continue to grow I know the lessons they learn from him will increase.

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As a mom of a child with Down syndrome, I think it is important to put William out in the world so others can learn from him as well. If I knew a child with Down syndrome before I had one of my own, I think I would have been less afraid. There is such a fear in the unknown. The medical jargon is so scary. But the reality of having a child with Down syndrome is nothing like what you imagine. William is perfect just the way he is and the love and joy he brings us is priceless.

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Check back tomorrow as we continue celebrating Down Syndrome Awareness Month or click below to read all of our previous posts.

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Meet Wil

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Have you seen Wil fly? He’s amazing! And today Wil is celebrating his third birthday right here on The Mango Memoirs! One year ago, I first introduced you to Wil and his incredible power of flight, made possible with a little help from his mom and dad, Nikki and Alan. They’ve had some pretty fantastic attention in the last year while sharing about the incredible potential of those with Down syndrome. Wil even has a calendar! Half of all proceeds from the sale of the calendars will go to Ruby’s Rainbow (I introduced you to Ruby just a few days ago) and to Reece’s Rainbow, two organizations changing the world for so many with Down syndrome. Pre-orders for the 2017 calendar can be placed right now by clicking here. You can continue to follow Wil’s flight at ThatDadBlog.com and on Instagram @thatdadblog and @nikkizl. Happy birthday, Wil!!

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What are some things Wil really likes to do?
run around making messes, playing with his siblings, teasing, reading books, playing with the toy kitchen and cooking everyone food which we must all try 🙂

What is his favorite movie?
Veggie Tales. Bob the Tomato is his favorite.

What would Wil do if he could design his own day?
He’d go from room to room making a huge mess!

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Who does he love to spend time with and what do they do?
He loves being with his siblings.  He mostly just lets them spoil him rotten.

What is something you want everyone to know about Wil?
Wil is the sunshine in our family.  Whenever someone is having a bad day or is upset, we send them to spend time with Wil and get a giant Wil Hug.  He radiates joy and happiness to all around him.  We are so thankful for him in our family.

What is something you don’t think many people know about Down syndrome?
They have a special spirit about them, they are so close to God.  If we all could look at life with as much joy as they do, we would all be better people.

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Check back tomorrow as we continue celebrating Down Syndrome Awareness Month or click below to read all of our previous posts.

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