Down Syndrome Awareness Month

Celebrating Persons of Worth, Part 2

Are you aware of the beauty that enters the world when a baby with Down Syndrome is born?

October is Down Syndrome Awareness Month.

In this series, which Janet and I put together for Bear Paw Creek, we have three goals:

  1. To appreciate the wonderful people in our lives who have Down Syndrome.
  2. To encourage family members who love people who have Down Syndrome. 
  3. To replace society’s fear of Down Syndrome with knowledge about and respect for people who are born with it.

This is part two of that series.

Down Syndrome Awareness

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What determines the worth of a person? 

Is it what a person has accomplished?

Is it how that person makes us feel or what he does for us?

By all of these measures, people born with Down Syndrome are people of worth.

In this second part of our series to celebrate people with Down Syndrome, we asked two moms of children born with Down Syndrome to share their hearts with you.

We don’t ask this lightly, but both Gloria Hsu and Joy Racicot have graciously agreed to give you a glimpse into their hearts and lives.

I knew Gloria Hsu when I was in high school and she was in elementary school. She had a different last name then. 😉 Our parents were friends and I babysat Gloria and her three sisters. They were a fun bunch, good memories! 

Fast forward a three decades… I remember reconnecting with Gloria and her family, then receiving the news that Russel had Down Syndrome. Since then, I’ve seen pictures of this bubbling bright boy and their loving family as he’s grown the last three years. It always gives me joy to see her pictures posted online and I’ll take all the joy I can get!

But joy isn’t all there is, there are tears too.

I want to let Gloria share an excerpt from her journal with you. It’s an exceptional privilege when someone will let you enter into their innermost thoughts like this.

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A “Tiny” Piece of Heaven, by Gloria Hsu

a-tiny-piece-of-heaven

Journal entry August 25, 2016 [Edited by Gloria Hsu]

Today a friend told me that her aunt, who had passed away several years ago, had Down Syndrome. As Trish started to share her aunt’s story, I could feel the strange mix of emotions that so often unexpectedly emerge on this journey with our three-year-old son, Russell, who has Down Syndrome.  Hope, joy, grief, love, mystery, connectedness to God. After her aunt passed away, Trish asked God for a sign that her Aunt Lori was okay. She had a dream in which her aunt was in heaven, and noted that she looked so beautiful. I urgently interrupted to ask the question that immediately came to my mind.  “Did she look like she had Down Syndrome?”  Trish smiled and said, “She looked like her, but she did not have Down Syndrome.”  Tears streamed down my face. I couldn’t be sure why I was crying.  

I cried again sharing the dream with my husband, Clive.  Later, I went into the kitchen and asked God out loud, “Why am I crying?”  My emotions took me back to when Russell was first born and then, at two weeks old, diagnosed with Down Syndrome. The memories came flooding back of me looking down at him and thinking that there was supposed to be another Russell without Down Syndrome, a Russell that I would never know. Tears would stream back then, too; grief and joy constant companions. In Heaven, we will know Russell without Down Syndrome, but he will still be him.  It makes me feel conflicted because Russell with Down Syndrome IS Russell and he is a true gift.  It’s so hard to put into words. Had I thought that Russell would have Down Syndrome in heaven? I hadn’t really processed it yet.

gorgeous-smile

Down Syndrome on earth is a gift.  It’s extra in a person. It’s a world-changer.  It’s a freedom to just BE.   Heaven doesn’t need people with an extra chromosome.  But Earth does. I remember talking to my dad about orphans with Down Syndrome the summer before Russell was born.  He said that he imagines that we will all get to heaven and discover that we had it all backwards, that those of us without Down Syndrome were actually the ones with special needs. Now that we have Russell, this suspicion is even more confirmed in my mind.  The world needs more Russells – reflections of pure love, of innocence in a world full of striving, anger, hate, hopelessness, and shame. Russell’s Down Syndrome on earth is a gift to us and to the world that isn’t needed in heaven, where there will finally be true innocence, joy, and love, with no more striving.

 

russels-paint-project

In Heaven, Russell will also be free to live to his fullest potential and ability, where here he has limitations. We didn’t know at what age he would take his first steps, or be able to run. We don’t know for sure that he will ever be able to speak clearly, get married, or go to college; yet witnessing the path that he is on now at just three years old, we are sure nothing will stop him! We ALL have limitations. Even our love on earth has limits. But Russell’s love has no limits, no filter, no judgment—it’s pure—and given freely to everyone.  Even when his exuberant waves of hello are so often unreturned, unacknowledged, or unnoticed, he never stops giving those waves freely and lovingly. He is amazing.  I can’t believe that we get him.  [journal entry ends]

 

Down Syndrome Awareness brothers

Many want to get down to the nitty-gritty theology of chromosomal abnormalities, whether God made them or allowed them, and if they are a result of a sinful, broken world. These are hard, natural questions. But only God knows the true and final answers.  He exceedingly responded to our hearts’ cries and our human wrestlings for answers soon after Russell was born.  While we were waiting the ten days to find out if our son had Down Syndrome, the following verse pierced my heart, and I wept as I read it on my balcony that night:  Isaiah 41:20, “so that people may see and know, may consider and understand, that the hand of the Lord has done this, that the Holy One of Israel has created it.”

If you would like to read the story of how God miraculously prepared Gloria and her husband for the birth of their son with Down Syndrome, you can read it at www.lifeisamist.wordpress.com.

 

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Gloria Hsu lives with her husband, Clive, and their 4 boys, on the island of Taiwan, a country of 23,000,000 people, that has one of the highest abortion rates in the world. Almost 100% of babies diagnosed with Down Syndrome in utero are aborted. The year Russell was born, there were only 14 people born with Down Syndrome on the entire island. God prepared the way for Gloria and a friend to open a crisis pregnancy center in the city of Taichung, even before Gloria knew Russell would be her son. You can learn more about their ministry on their Facebook page Pregnancy Support Center-PSC or their website at www.pregnancysupport.tw. Gloria would love to hear from you at [email protected]

 

the-hsu-family-2

 

Meet Deon and Tim.

Take the time watch the videos below so you can meet Deon and Tim and hear them talk about their lives and what they’re excited about. Notice the pride and love which pours from their friends and family when they speak of them these young men. You’ll be inspired and encouraged. These young men aren’t alone. All across the world are men and women with Down Syndrome who are like to learn, work hard, and want to be a part of caring for those around them.

Back to the question of worth.

While people with Down Syndrome are great people and able to contribute to our lives in a way that’s meaningful, I contend their worth doesn’t come from those factors, but from a place more intrinsic.

We need to agree that all people are worth our love regardless of the pain or effort their lives draw out of them and us.

I’d like you to meet another mom who has walked this road with her children and has encouragement to give. Joy Racicot is the second mom whom Janet invited to share regarding Down Syndrome. Our friend Joy wrote a post called In the Image of God and posted it on her blog www.beanpostfarmstead.com. She was excited to let us share the link to her post with you. Her writing is  honest about the fears and struggles, yet she encourages us to understand that the worth of a person comes from their Creator. 

It seems to me that suffering, pain, and sorrow are not the enemy of love and joy. Love and joy shine in the most trying times; they wither in the presence of  fear. That’s why I propose that we all learn to be courageous, realizing that life is hard, but that we and our children can face what’s ahead by God’s grace and by giving each other grace.

[Tweet “Love & joy shine in the most trying times; they wither in the presence of fear.”]

Links to more stories and information about Down Syndrome Awareness Month.

Please join us in celebrating Down Syndrome Awareness Month. Below are more links for information and more inspiring stories. I hope you them and share them with others:

In an age where the media discusses the dangers and merits of designer babies, where does that put people who are born with an extra chromosome? It puts them exactly where they have always been, as precious people of worth in our families and in society. Mothers and fathers, whose babies are diagnosed with Down Syndrome en utero, often feel pressured to abort them and they may be filled with fear for the future (The exact numbers of babies aborted because of a Down Syndrome Diagnoses are unknown, but this article sheds some light on the numbers www.lifeissues.org.)

Down Syndrome Awareness Month is an opportunity for us to remind each other of the potential of each baby born with Down Syndrome and to bring hope and courage to the fight against fear. Let’s not miss the joy that a child can bring into this world or rob them of the chance to live up to their own potential whether or not he or she has Down Syndrome.

Let’s break down fear, and draw back the curtain on how much people with Down Syndrome contribute to our lives and our culture! 

 

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Balloon Ball Activity Ideas

Balloon Ball Activity Ideas

Written by: Julie Palmieri, MM, MT-BC is the owner of Serenade Designs, which specializes in helping music therapists create, enhance, and ROCK their online presence. She is a board-certified music therapist, wife, and Momma to 2 beautiful little girls. She loves Christmas, chocolate, and Detroit Red Wings hockey. Visit her website and follow her on social media: Serenade-Designs.com

 

All about the Balloon Ball:

From simple movements to creating your own Balloon Ball Olympics!

The balloon ball is extremely versatile when using it within your sessions and classes. What’s even better is that the balloon ball is super soft, lightweight, and protects the balloon from being popped.

It comes in many themes and variations: rainbow, pumpkin, flower, snow, Valentine, St. Patrick’s Day, or watermelon. You place a balloon through the slit on the bottom, blow it up, tie it off, tuck in the tail…and the FUN begins!

Using a balloon ball can help with the following goal areas:
  • Enhancing eye-hand coordination
  • Following directions
  • Improving peer-to-peer and social interaction
  • Increasing gross motor movement and coordination
  • Improving motor control and planning
  • Crossing midline
  • Increasing range of motion
  • Enhancing visual stimulation
Balloon Ball Activity Ideas | Bear Paw Creek

Twelve simple movements to do with the balloon ball:

These can be done individually or in small groups…

  • Tap
  • Gently drum and create rhythms
  • Toss and catch
  • Kick
  • Roll (here’s a perfect balloon ball rolling song from Rachel Rambach of Listen & Learn Music)
  • Throw and catch with a partner
  • Hide around the room
  • Balance (on your hand, on your head)
  • Keep It Up (off the ground)
  • Toss, turn 360 degrees, and catch
  • Bounce off a body part (head, knee, elbow, hand)
  • Freeze dance

 

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Balloon Ball Olympics | Bear Paw Creek

You can create your own Olympic-style competition with the balloon ball. These “sports” can help with eye-hand coordination and motor control, as well as provide opportunities to cross midline. You need a balloon ball and a few extra props, and you’re set to play some sports!

Some additional props needed:

  • Pool noodles (you can cut them in half, if needed)
  • Boogie boards
  • Laundry baskets
  • Plastic fly swatter
  • Hula hoop

Balloon Ball Olympics can consist of the following sports: 

Balloon Hockey: Team members push the balloon ball with a pool noodle into a laundry basket goal

Balloon Baseball: Team members hit the balloon ball with a pool noodle or a boogie board for a bat (bonus points for a solid swinging motion that crosses midline!)

Balloon Tennis: Team members serve up an ace with the balloon ball and a fly swatter as a racket

Balloon Basketball: Team members shoot three-points with the balloon ball into the middle of a hula hoop

Additional Balloon Ball Ideas:

  1. Have a Penguin Waddle Race (to be used with individuals or small groups) 
  2. Hang the balloon ball from the ceiling and bump, swat, swing, bounce, and tap off of certain body parts
  3. Throw your balloon ball in the middle of your parachute! Such colorful and visually stimulating fun!

Purchase your balloon ball here!

Ribbons and Dancing and Scarves! Oh, My!

 

Ribbons and Dancing and Scarves! Oh, My!

Jenette Clay is a blogger, SEO content and podcast show notes writer. She loves dancing with her little kids and annoying her older ones. She admires Janet Stephens and all that she has done as a wife, a mom and owner of Bear Paw Creek.

 

Have you ever danced with ribbons or watched someone else (whether they were dance professionals or your kids in your living room)? Here’s a list of songs and activities you can use with kids and in elder care.
 
The effect of the fabric streaming out behind as you move is fascinating and adds dimension to motion – ramping up the fun quotient exponentially.

Hold an impromptu dance party in for your kids

Visual Music

Fluttering waves

Swirling rainbows
Giggles, pirouettes, motion music
Purple…chasing blue…chasing gold overlap in dancing ripples
A final bow
Collapsing into piles of laughter and smiles
 
Granted this would be a scene in my living room, not a well-organized class or a performance at the ballet, but ribbons and scarves, music and dancing are a feast for the senses. Have you ever seen a Chinese scarf dance (or the dances with dresses which have the long silky sleeve ribbons)? The dancers move gracefully as their arm movements cause the ribbons to ripple around them like water or twirl above their heads cascading back down again as they weave a tapestry of color on the stage. It is mesmerizing.
 
 Movement Scarf Set of 12, 6 colors
If you’ve ever danced with ribbons or scarves, you know how much fun and fascinating it is to see what shapes your motions can conjur up. You don’t have to be a professional to enjoy it.
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I’ve got some resources for you!

If you need ideas to for activities to get people moving in elder care, at school, for youth groups or in your living room, I have a line up of links to get you inspired. I also have a list of activities and songs you can use with scarves and streamers that you can print out and take with you. Very handy!

So, here we go:

  1. I like the fabulously fun and creative Beverly Meyer. She calls herself The Music Lady and you can watch what she does here, on Youtube, to see what a blast kids and adults can have singing and dancing together.
  2. Miss Jen, Children’s Librarian, sings All the fish are swimming in the water (illustrating a song that makes great use of the effects in the movement of the scarves.) on Youtube
  3. Here is a great Pinterest Board with plenty lots of video suggestions for songs and activities using scarves by curated by Dana and Lindsey, Children’s Librarians.
  4. I love these ideas from the Future Librarian Superhero
  5. Great for the church nursery and for moms at home. I found this, on Youtube – perfect for babies and toddlers.
  6. One of my favorite songs is from Macaroni Soup, Dancing Scarf Blues! It’s pretty jazzy and I think would be a great resource for activities directors involved in Elder Care. Brighten up the lives of people in nursing homes by getting out a batch of beautiful scarves and putting on some music to dance to.

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Take a look at those sites, get the list, and tell us what you think. How long has it been since you’ve danced with ribbons, streamers or scarves? How long has it been since you’ve danced with ribbons, streamers or scarves? Do you have some songs or activities to add to this list? I’d love to hear from you and have you add your suggestions to mine!

Activities and Songs for Scarves and Streamers

 

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