Sloop Johnnie B

Team Years: 2
https://www.ds-stride.org/columbusbuddywalk/profiles/team/SloopJohnnieB

Welcome to our 2019 Columbus Buddy Walk® team fundraising page!

Johnnie has brought us so much joy this past year and we can't wait to share all of the wonderful and amazing things he's been doing with you! Stop by one of our fundraising events or the Walk to give him a high five. He will brighten your day with a laugh and smile for sure!

We can't wait to join thousands of other participants at The Fortress on Sunday, September 29th, 2019 to celebrate all of our fundraising success! Please stay tuned for more information about our team regarding upcoming fundraising opportunities and our team's tailgating plans for the day of the walk. 

With over 250,000 people in the United States with Down syndrome, we strive to provide tools and opportunities that promote awarenessacceptance, and inclusion in our communities. Every dollar we raise brings us one step closer to ensuring that Johnnie and every individual will have the opportunity to reach their potential.

Our fundraising efforts will support local programs and services, as well as National Down Syndrome Society advocacy and public awareness initiatives that benefit all individuals with Down syndrome.

Make your tax-deductible donation today and take the first step toward helping us achieve our goal. Thank you for your support!

Our Funds Raised: $4,990.94
My goal: $5,000.00 99%
Fundraising History
Kim Ninke $50.00
Kathleen Pine $25.00
Go team Sloop Johnnie B!
Erin & Scott $50.00
Go Johnnie Go!
Nawojchik/Kennedy family $50.00
Pop Pop $100.00
Jimmie Halfen $25.00
Wesley Williamson $10.00
💛💙❤️
Anne Jubera $50.00
Bauer family $25.00
Carolyn Noll!! $5.00
Sorry tuition doesn’t allow me to donate more!! Love your sweet family <3
Liam and Anna $100.00
Go Johnnie Go! Wish we could be there!
Gutierrez Family Private
Go Johnnie Go!
Blake, Gabe, Marco $25.00
The Sloan Family $100.00
We love you! ♥️
Bill & Wendi $25.00
The Tanzillo Family $100.00
Love you guys! Wish we could be there.
Cara Flaherty $50.00
Jamela, Jamie & Emmylou $50.00
Allison Mertzman $100.00
Love you guys - give Johnnie and Juni hugs for me! Wish I could be there to walk. <3
Katie Miller $21.00
Calhoon Family $10.00
Isla Murden $25.00
Julz $40.00
Social Media Incentive $50.00
Team Captain Happy Hour Incentive $250.00
The Reynolds Family $50.00
Thinking of you guys & have a great time at the Walk! - Melissa
Sarah, Mark & Henry Flathman $100.00
Sorry we can't join you in person this year! Sending love & support from Oregon <3
Carole and Steve Wyatt $100.00
We love you Bailey family and can’t wait to be with you all for the buddy walk.
Dries family $200.00
Wishing you all a super walk. We are all cheering you on Johnnie and team Sloop Johnnie B. ❤️
Nana & Papa Julian $100.00
Jess and Ida $100.00
We are so proud of you Johnnie!
Anonymous Private
Julie, Todd, Ben, Harry, Ellabelle & Olivia Private
Team Stephens is proud to support Team Sloop Johnnie B!
Yard Sale Fundraiser $348.00
Pinball Tournament Fundraiser $630.00
Pinball Tournament and Raffle at Arcade Super Awesome
Chipotlle Fund Raiser $129.94
Chrissy's BD Fundraiser $85.00
Facebook
Simmons Family $25.00
Chrissy's Birthday Fundraiser $571.00
Evelyn Wiesner $79.00
Crystal & Robert Sherman $75.00
Sending our love & support! Go Johnnie!!
Laura, Dan, Asher, Tavi, & Micah Katz $50.00
Sending love and support to y'all. Wish we could walk with you!
Alexis Gutierrez Private
Go Johnnie! We love you!
Kathleen Hinkle $50.00
Anonymous $10.00
Happy World Down Syndrome Day
Matthew Bailey $21.00
Juniper Bailey $21.00
Chrissy Bailey $21.00
Kathleen Hinkle $21.00
Carole Wyatt $21.00
Steve Wyatt $21.00
Judy Bailey-Julian $21.00
Ellen Strand $21.00
Roxanne Bailey $21.00
Brooke Bailey $21.00
Tiffany Bailey $21.00
Dave Bailey $21.00
Genny Michelle $21.00
Millie Vaught $21.00
Jean Martin $21.00
Tradd Martin $21.00
Alex Martin $21.00
Robert Julian $21.00
Evelyn Weisner $21.00
Cam Martin $21.00
Barb syroney $21.00
Amy Armelie $21.00
Mike Armelie $21.00
Michael Armelie $21.00
Jack Armelie $21.00
Leslie Miller $21.00
Lucy Miller $21.00
William Miller $21.00
Liam Miller $21.00
Laura Cook $21.00
Isla Murden $21.00
Lauren Goodburn $21.00
Andy Clager $21.00
Johnny Clager $21.00
Kim Ninke $21.00
Lindsay Ninke $21.00
Tim Ninke $21.00

Y’all. We need your help with two things.
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1. Captioning this photo by @brittney_cottman_photography
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2. Reaching our goal of raising $5000 for @dsaco_cbus. Join our team or make a small contribution at the link in our profile by August 31st!!! That’s just a little over one week left! Your donations help fund resource groups, scholarships, advocacy and awareness efforts, fitness and education programs, and social events for people with Down Syndrome and their families. 💙💛💙
•
#buddywalk2019 #captionme #nothingdownaboutit #theluckyfew #siblings #t21 #inclusionmatters #morealikethandifferent

Y’all. We need your help with two things. • 1. Captioning this photo by @brittney_cottman_photography • 2. Reaching our goal of raising $5000 for @dsaco_cbus. Join our team or make a small contribution at the link in our profile by August 31st!!! That’s just a little over one week left! Your donations help fund resource groups, scholarships, advocacy and awareness efforts, fitness and education programs, and social events for people with Down Syndrome and their families. 💙💛💙 • #buddywalk2019 #captionme #nothingdownaboutit #theluckyfew #siblings #t21 #inclusionmatters #morealikethandifferent

Johnnie says scoot on over to the Buddy Walk site and sign up to walk with us on September 29! It’s going to be the best day of celebration, inclusion, and love. Sign up or make your tax deductible donation by August 31st to be guaranteed a t-shirt and help us meet our fundraising goal ✌️💙 Link in profile.
•
#buddywalk2019 #theluckyfew #nothingdownaboutit

Johnnie says scoot on over to the Buddy Walk site and sign up to walk with us on September 29! It’s going to be the best day of celebration, inclusion, and love. Sign up or make your tax deductible donation by August 31st to be guaranteed a t-shirt and help us meet our fundraising goal ✌️💙 Link in profile. • #buddywalk2019 #theluckyfew #nothingdownaboutit

Buddy Walk Wednesday! These two would like to thank Wendi and @sirwilliamjohnston and Liam and @anna_m_drozda for your donations. And another round of gratitude to the Gutierrez family, @tea4tiger, and the Sloan Family for your double donations this year!
•
We are surprised and excited to announce that Johnnie will be on a @dsaco_cbus billboard in Columbus soon to advertise the Buddy Walk! Keep your eyes peeled 👀
•
#catsdontcountchromosomes #buddywalk2019 #nothingdownaboutit #theluckyfew

Buddy Walk Wednesday! These two would like to thank Wendi and @sirwilliamjohnston and Liam and @anna_m_drozda for your donations. And another round of gratitude to the Gutierrez family, @tea4tiger, and the Sloan Family for your double donations this year! • We are surprised and excited to announce that Johnnie will be on a @dsaco_cbus billboard in Columbus soon to advertise the Buddy Walk! Keep your eyes peeled 👀 • #catsdontcountchromosomes #buddywalk2019 #nothingdownaboutit #theluckyfew

Putting my vulnerability pants on for this Monday’s question! I love answering these because they make me think about and put into words things that I probably wouldn’t put out there otherwise. Follow along at #raisinglittleworldchangersweek9.
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“What is your biggest fear surrounding Down Syndrome, and what do you do to work through it?”
•
Every parent worries! And worries are constantly evolving. One of my big, long-term worries is how others will treat Johnnie and how I will react. I cannot control what others say to him or about him, but I can control my response. It’s hard not to react with raw emotion, but to diffuse and educate instead. What will I say if someone uses the r-word? How do I advocate in IEP meetings? How will I help defeat stereotypes? How do I shift the narrative and work towards inclusion? We are muddling through this fear by learning from others and educating ourselves, but we are still terrified 😆! This question was tricky and it’s hard to put everything we feel about it into words, but there ya go. •
#theluckyfew #downsyndromeawareness #morealikethandifferent #t21 #nothingdownaboutit #inclusionmatters #shouttheirworth

Putting my vulnerability pants on for this Monday’s question! I love answering these because they make me think about and put into words things that I probably wouldn’t put out there otherwise. Follow along at #raisinglittleworldchangersweek9. • “What is your biggest fear surrounding Down Syndrome, and what do you do to work through it?” • Every parent worries! And worries are constantly evolving. One of my big, long-term worries is how others will treat Johnnie and how I will react. I cannot control what others say to him or about him, but I can control my response. It’s hard not to react with raw emotion, but to diffuse and educate instead. What will I say if someone uses the r-word? How do I advocate in IEP meetings? How will I help defeat stereotypes? How do I shift the narrative and work towards inclusion? We are muddling through this fear by learning from others and educating ourselves, but we are still terrified 😆! This question was tricky and it’s hard to put everything we feel about it into words, but there ya go. • #theluckyfew #downsyndromeawareness #morealikethandifferent #t21 #nothingdownaboutit #inclusionmatters #shouttheirworth

Johnnie loves nana’s tee shirt 🥰 @poochie_10
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#theluckyfew #nothingdownaboutit #extraordinary

Johnnie loves nana’s tee shirt 🥰 @poochie_10 • #theluckyfew #nothingdownaboutit #extraordinary

So, what are y’all gettin into this weekend?
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How about throwing a few bucks at this silly guy’s Buddy Walk team to kick it off right? 😉 Every little bit helps us get closer to reaching our goal! Link in profile✌️❤️🤗
•
#buddywalk2019 #nothingdownaboutit #theluckyfew #t21 #toddlersofinstagram

So, what are y’all gettin into this weekend? • How about throwing a few bucks at this silly guy’s Buddy Walk team to kick it off right? 😉 Every little bit helps us get closer to reaching our goal! Link in profile✌️❤️🤗 • #buddywalk2019 #nothingdownaboutit #theluckyfew #t21 #toddlersofinstagram

“Why do you think it’s important to support @dsaco_cbus and the Columbus Buddy Walk?”
•
Matt and I think of ourselves as somewhat socially conscious individuals - volunteering and supporting different causes throughout our lives, keeping up with what’s going on in the world, that kind of thing. Nothing huge, but trying to contribute and do our part to give back.
•
However, we have always come from a pretty privileged position of choosing the causes that spoke to us and that we support. Welp, on November 28, 2017 the Buddy Walk picked us and for that we are endlessly grateful. We are still new to this and the subtle reasons why we fundraise may change and evolve each year. This is a learning process for us! But our main reasons for supporting @dsaco_cbus and the Buddy Walk walk will always prevail. We want to raise awareness and promote inclusion and acceptance of people with Down Syndrome. We want to shout their worth. We want to shift the narrative. We want Johnnie and others with DS to have every opportunity that any typically developing person would have. We want people to presume competence. We want it all!!!
•
@dsaco_cbus is going to be here with us through every stage of life, as we learn and grow as advocates and as a family. Down Syndrome occurs in all races and socioeconomic backgrounds. Your contributions are not only helping our family, but families from all walks of life.
•
That’s why we are doing this and that is why we are grateful for your support. It means so much and we thank you from the bottom of our hearts.

“Why do you think it’s important to support @dsaco_cbus and the Columbus Buddy Walk?” • Matt and I think of ourselves as somewhat socially conscious individuals - volunteering and supporting different causes throughout our lives, keeping up with what’s going on in the world, that kind of thing. Nothing huge, but trying to contribute and do our part to give back. • However, we have always come from a pretty privileged position of choosing the causes that spoke to us and that we support. Welp, on November 28, 2017 the Buddy Walk picked us and for that we are endlessly grateful. We are still new to this and the subtle reasons why we fundraise may change and evolve each year. This is a learning process for us! But our main reasons for supporting @dsaco_cbus and the Buddy Walk walk will always prevail. We want to raise awareness and promote inclusion and acceptance of people with Down Syndrome. We want to shout their worth. We want to shift the narrative. We want Johnnie and others with DS to have every opportunity that any typically developing person would have. We want people to presume competence. We want it all!!! • @dsaco_cbus is going to be here with us through every stage of life, as we learn and grow as advocates and as a family. Down Syndrome occurs in all races and socioeconomic backgrounds. Your contributions are not only helping our family, but families from all walks of life. • That’s why we are doing this and that is why we are grateful for your support. It means so much and we thank you from the bottom of our hearts.

Buddy Walk Wednesday Gratitude! Thank you so much to the @nictanzillo family for you generous donation! And thank you to @legoobs @acloogs and Johnny for joining the team! Cannot wait to walk with y’all again 💙
•
@thefightinglibrarian @totalswoon @pjthepony and @poochie_10 let’s see those t-shirts when you get them! Thank you for supporting the team through this fundraiser 💛 we love you all and our hearts are overflowing with your support 🤗

Buddy Walk Wednesday Gratitude! Thank you so much to the @nictanzillo family for you generous donation! And thank you to @legoobs @acloogs and Johnny for joining the team! Cannot wait to walk with y’all again 💙 • @thefightinglibrarian @totalswoon @pjthepony and @poochie_10 let’s see those t-shirts when you get them! Thank you for supporting the team through this fundraiser 💛 we love you all and our hearts are overflowing with your support 🤗

Question Monday! I’m joining others to spread awareness about people with different abilities. “What is your favorite thing about Down Syndrome?” I’m interested to read other answers this week because it can be interpreted in lots of different ways! Follow along at #whatiloveaboutyouqandaweek8.
•
I have so many favorite things about Johnnie, but he is not Down syndrome. While he may share some of the same physical traits and characteristics as others with Trisomy 21, he is his own unique individual, just as anyone with any diagnosis is. So, for us the best thing that has come along with the diagnosis of DS is the community. It feels amazing to have been welcomed into this group of friends and mentors. We are each experiencing something different, but united by one special extra chromosome. Words can’t describe the understanding, love, unity, acceptance, generosity, and support we have received from our community. And much of that is tied into our local organization @dsaco_cbus. They are there for us in so many ways each and every day!
•
That said, my favorite things about Johnnie are his laugh, his smile, his snuggles (rare these days because toddlerhood), his easy going nature, his social personality, his independence, the way he moves and communicates, and so much more. But these things are Johnnie and I know that many factors influence who he is - like being a second child, his temperament that he was born with, his sister and family, and his genetic makeup.
•
#downsyndromeawareness #theluckyfew #nothingdownaboutit #t21 #whatiloveaboutyouqandaweek8

Question Monday! I’m joining others to spread awareness about people with different abilities. “What is your favorite thing about Down Syndrome?” I’m interested to read other answers this week because it can be interpreted in lots of different ways! Follow along at #whatiloveaboutyouqandaweek8. • I have so many favorite things about Johnnie, but he is not Down syndrome. While he may share some of the same physical traits and characteristics as others with Trisomy 21, he is his own unique individual, just as anyone with any diagnosis is. So, for us the best thing that has come along with the diagnosis of DS is the community. It feels amazing to have been welcomed into this group of friends and mentors. We are each experiencing something different, but united by one special extra chromosome. Words can’t describe the understanding, love, unity, acceptance, generosity, and support we have received from our community. And much of that is tied into our local organization @dsaco_cbus. They are there for us in so many ways each and every day! • That said, my favorite things about Johnnie are his laugh, his smile, his snuggles (rare these days because toddlerhood), his easy going nature, his social personality, his independence, the way he moves and communicates, and so much more. But these things are Johnnie and I know that many factors influence who he is - like being a second child, his temperament that he was born with, his sister and family, and his genetic makeup. • #downsyndromeawareness #theluckyfew #nothingdownaboutit #t21 #whatiloveaboutyouqandaweek8

#fbf to last year’s photo shoot with @brittney_cottman_photography. And one from our shoot this summer!  @dsaco_cbus provides free portrait sessions for families each year. Photographers like Brittney volunteer their time and DSACO creates a beautiful calendar each year to help raise awareness for Down Syndrome in the community.
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#familyportraits #theluckyfew #dsaco #nothingdownaboutit #fbf #downsyndromeawareness #t21

#fbf to last year’s photo shoot with @brittney_cottman_photography. And one from our shoot this summer! @dsaco_cbus provides free portrait sessions for families each year. Photographers like Brittney volunteer their time and DSACO creates a beautiful calendar each year to help raise awareness for Down Syndrome in the community. • #familyportraits #theluckyfew #dsaco #nothingdownaboutit #fbf #downsyndromeawareness #t21

Damn fine advocacy. Grab a shirt at the link in profile. All proceeds go towards Team Sloop Johnnie B.
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#twinpeaks #buddywalk #t21 #nothingdownaboutit #shouttheirworth #downsyndromeawareness #theluckyfew

Damn fine advocacy. Grab a shirt at the link in profile. All proceeds go towards Team Sloop Johnnie B. • #twinpeaks #buddywalk #t21 #nothingdownaboutit #shouttheirworth #downsyndromeawareness #theluckyfew

This guy tried cotton candy for the first time today at the @ohiostatefair!
•
And now for some Buddy Walk Wednesday thank youuuuuus! We are grateful to have @islachristineprice on the team and as a donor! And so much love to @caraef, @amertzman, @rider1969, Katie Miller, Julz, and the Calhoun family for your super generous donations!
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Your contributions fund things like the new parent packages given to families in Central Ohio who have a new baby with Down Syndrome. This welcome gift is the gateway into the most amazing, supportive, and wonderful community of #theluckyfew. This is how every baby with DS should be welcomed into the world! Showered with gifts and love and @dsaco_cbus helps make that happen with your support! This gift package, among other things that DSACO did for us, helped us to realize that Johnnie’s birth diagnosis wasn’t something scary. That indeed he would be #morealikethandifferent and one of the best things that has ever happened to our family!
•
#dsaco #buddywalk2019 #shouttheirworth #nothingdownaboutit

This guy tried cotton candy for the first time today at the @ohiostatefair! • And now for some Buddy Walk Wednesday thank youuuuuus! We are grateful to have @islachristineprice on the team and as a donor! And so much love to @caraef, @amertzman, @rider1969, Katie Miller, Julz, and the Calhoun family for your super generous donations! • Your contributions fund things like the new parent packages given to families in Central Ohio who have a new baby with Down Syndrome. This welcome gift is the gateway into the most amazing, supportive, and wonderful community of #theluckyfew. This is how every baby with DS should be welcomed into the world! Showered with gifts and love and @dsaco_cbus helps make that happen with your support! This gift package, among other things that DSACO did for us, helped us to realize that Johnnie’s birth diagnosis wasn’t something scary. That indeed he would be #morealikethandifferent and one of the best things that has ever happened to our family! • #dsaco #buddywalk2019 #shouttheirworth #nothingdownaboutit

We need your help!!! Vote for your TWO favorite Johnnie pics in the comments or send us a message by Tuesday, August 6th!
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During the Buddy Walk @dsaco_cbus creates a video showcase of all the teams to project on the four jumbotrons at @fortressobetz! We need help picking our top two favorite pictures for the slideshow and we’d love your input.
•
Then register and join us on September 29th to see Johnnie IRL and on the jumbotrons 😉
•
#buddywalk2019 #jumbotron #dsaco #theluckyfew #t21 #nothingdownaboutit #shouttheirworth #inclusionmatters

We need your help!!! Vote for your TWO favorite Johnnie pics in the comments or send us a message by Tuesday, August 6th! • During the Buddy Walk @dsaco_cbus creates a video showcase of all the teams to project on the four jumbotrons at @fortressobetz! We need help picking our top two favorite pictures for the slideshow and we’d love your input. • Then register and join us on September 29th to see Johnnie IRL and on the jumbotrons 😉 • #buddywalk2019 #jumbotron #dsaco #theluckyfew #t21 #nothingdownaboutit #shouttheirworth #inclusionmatters

It’s Raising Lil World Changers Question Monday. Spreading love and awareness for people with different abilities! Follow along with #raisinglittleworldchangersquestion7 to see so many other answers to this fun question 🥰 and check out my stories for highlights of our friends!
•
“What are Johnnie’s five favorite things right now?” He takes joy in pretty much everything so it was hard to narrow down. Runner ups include all the toys, his bottle, and the sandbox 🙃
•
1. Our cat Magic - His sign for cat is the cutest thing! He will holler and sign as soon as Magic walks in the room 😻
2. His sister - Especially performing ballet with her. Dad and I can’t get enough of this sibling relationship at the moment 👫
3. Reading books - Piles and piles of books. He will sit for at least 20 minutes looking at books independently. My former librarian heart is ecstatic about this 📚 
4. Veggie straws - Sometimes Johnnie only wants to eat crunchy things that aren’t super nutritious. Sometimes we abide 🤪
5. Bathtime or any kind of water play - Our boy is a sensory seeker and one of his favorite sensory play activities is splashing in the water 💦

It’s Raising Lil World Changers Question Monday. Spreading love and awareness for people with different abilities! Follow along with #raisinglittleworldchangersquestion7 to see so many other answers to this fun question 🥰 and check out my stories for highlights of our friends! • “What are Johnnie’s five favorite things right now?” He takes joy in pretty much everything so it was hard to narrow down. Runner ups include all the toys, his bottle, and the sandbox 🙃 • 1. Our cat Magic - His sign for cat is the cutest thing! He will holler and sign as soon as Magic walks in the room 😻 2. His sister - Especially performing ballet with her. Dad and I can’t get enough of this sibling relationship at the moment 👫 3. Reading books - Piles and piles of books. He will sit for at least 20 minutes looking at books independently. My former librarian heart is ecstatic about this 📚 4. Veggie straws - Sometimes Johnnie only wants to eat crunchy things that aren’t super nutritious. Sometimes we abide 🤪 5. Bathtime or any kind of water play - Our boy is a sensory seeker and one of his favorite sensory play activities is splashing in the water 💦

PT last year! Check out some snippets from PT today in my stories.
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#tbt #nothingdownaboutit #dsdn #theluckyfew #rody

PT last year! Check out some snippets from PT today in my stories. • #tbt #nothingdownaboutit #dsdn #theluckyfew #rody

Just crawled up the playground steps all by myself for the first time, nbd 🎉
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Buddy Walk Wednesday! So thrilled to walk with Auntie Laurie and the Miller family. Thank you for joining the team!!! And enormous thanks to @totalswoon and @missmeliss2665 for your generous donations. Every contribution helps to foster awareness, acceptance, and inclusion for people with Down Syndrome. We are grateful.
•
Y’all we are halfway to our fundraising goal! Even a small contribution will help us reach it, so don’t delay register or donate today. 31 sale is running through Saturday now and don’t forget to snag a tee at www.sloopjohnnieb.com (link in profile).

Just crawled up the playground steps all by myself for the first time, nbd 🎉 • Buddy Walk Wednesday! So thrilled to walk with Auntie Laurie and the Miller family. Thank you for joining the team!!! And enormous thanks to @totalswoon and @missmeliss2665 for your generous donations. Every contribution helps to foster awareness, acceptance, and inclusion for people with Down Syndrome. We are grateful. • Y’all we are halfway to our fundraising goal! Even a small contribution will help us reach it, so don’t delay register or donate today. 31 sale is running through Saturday now and don’t forget to snag a tee at www.sloopjohnnieb.com (link in profile).

It’s question Monday! We are here to spread awareness and share the awesomeness of those in our lives with different abilities. “How does your day with a child that has Down Syndrome differ than that of a typical child?” Follow #raisingworldchangersqandaweek6 to see lots of different perspectives!
•
There are couple of aspects that are a bit different than a “typical” 20 month old day, but for the most part, it doesn’t seem very out of the ordinary at all. The big difference is oxygen. Johnnie wears a nasal cannula overnight for sleep apnea. Apnea can be a pretty common problem for people with DS due to low tone, smaller facial structure, oversized tongue, and more soft tissue. Most kids with DS will have a sleep study by age 4. Johnnie will have his 4th one in September 😖 So the first thing we do in the morning is take off the O2. Some nights we worry if his cannula isn’t placed quite right or if he’s waking up from apnea. This is an extra step in the bedtime routine too, but after 20 months of taping that sucker onto his cheeks, I almost didn’t remember to include it in this post!
•
Occasionally we have a slew of doctors appointments or therapies, but lately we’ve had more free days as Johnnie is getting older. Every other week he has physical and feeding therapy. And that’s where the other subtle differences come in to play. Johnnie can crawl all over the house (and get into everything as any 20 month old would) but if we are out and about he’s in the stroller or I’m carrying him since he’s not walking yet. And we are still working on self feeding. I think these differences are most challenging for his sister because she’s ready for him to be more independent and wants him to run and play at the park. In the fall Johnnie will be starting at the Early Intervention infant and toddler preschool and they will do a chunk of his therapy there!
•
So most days we have a pretty normal and kind of boring routine! We are really enjoying a laid back summer schedule but fall and school will bring many changes, so we are soaking up these days while we can.
•
I’m sharing a few other answers in my stories so be sure to check those out.

It’s question Monday! We are here to spread awareness and share the awesomeness of those in our lives with different abilities. “How does your day with a child that has Down Syndrome differ than that of a typical child?” Follow #raisingworldchangersqandaweek6 to see lots of different perspectives! • There are couple of aspects that are a bit different than a “typical” 20 month old day, but for the most part, it doesn’t seem very out of the ordinary at all. The big difference is oxygen. Johnnie wears a nasal cannula overnight for sleep apnea. Apnea can be a pretty common problem for people with DS due to low tone, smaller facial structure, oversized tongue, and more soft tissue. Most kids with DS will have a sleep study by age 4. Johnnie will have his 4th one in September 😖 So the first thing we do in the morning is take off the O2. Some nights we worry if his cannula isn’t placed quite right or if he’s waking up from apnea. This is an extra step in the bedtime routine too, but after 20 months of taping that sucker onto his cheeks, I almost didn’t remember to include it in this post! • Occasionally we have a slew of doctors appointments or therapies, but lately we’ve had more free days as Johnnie is getting older. Every other week he has physical and feeding therapy. And that’s where the other subtle differences come in to play. Johnnie can crawl all over the house (and get into everything as any 20 month old would) but if we are out and about he’s in the stroller or I’m carrying him since he’s not walking yet. And we are still working on self feeding. I think these differences are most challenging for his sister because she’s ready for him to be more independent and wants him to run and play at the park. In the fall Johnnie will be starting at the Early Intervention infant and toddler preschool and they will do a chunk of his therapy there! • So most days we have a pretty normal and kind of boring routine! We are really enjoying a laid back summer schedule but fall and school will bring many changes, so we are soaking up these days while we can. • I’m sharing a few other answers in my stories so be sure to check those out.

Matt designed our first Buddy Walk shirts and tote! We hope to have new designs each year. All proceeds go to Team Sloop Johnnie B in support of the 2019 Columbus Buddy Walk! Head to the link in the profile to grab one.
•
#twinpeaks #firewalkwithme #buddywalkwithme #buddywalk2019 #dsaco #theluckyfew #extraordinary #t21 #downsyndromeawareness

Matt designed our first Buddy Walk shirts and tote! We hope to have new designs each year. All proceeds go to Team Sloop Johnnie B in support of the 2019 Columbus Buddy Walk! Head to the link in the profile to grab one. • #twinpeaks #firewalkwithme #buddywalkwithme #buddywalk2019 #dsaco #theluckyfew #extraordinary #t21 #downsyndromeawareness

Hey buds! We want 10 new team members by Sunday 🤝 come join us!
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#buddywalk2019 #dsaco #raisinglittleworldchangers #theluckyfew  #morealikethandifferent #nothingdownaboutit #siblings

Hey buds! We want 10 new team members by Sunday 🤝 come join us! • #buddywalk2019 #dsaco #raisinglittleworldchangers #theluckyfew #morealikethandifferent #nothingdownaboutit #siblings

Today I feel really grateful to be a part of #theluckyfew. This morning we celebrated the one year heartiversary of Johnnie’s good buddy. What an occasion!!! 💙💛💙
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This evening I attended a Columbus Buddy Walk meeting with many other team captains to check out the new location at The Fortress! You do not want to miss this event. The space is going to be awesome for tailgating, walking, and all the super fun activities, including touch-a-truck, face painting, a bounce house, mascots, and cheerleaders cheering on these amazing people we have in our lives! I never knew that this is where we’d be, but now that we are here I wouldn’t change a thing.
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Buddy Walk funds account for HALF of @dsaco_cbus operating budget! Help support the truly terrific work they do by joining us on September 29 at The Fortress or by making a tax deductible donation at the link in profile. Check out my stories for more pics from the day.
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#raisinglittleworldchangers #morealikethandifferent #buddywalk2019 #dsaco #nothingdownaboutit #shouttheirworth #wouldntchangeathing

Today I feel really grateful to be a part of #theluckyfew. This morning we celebrated the one year heartiversary of Johnnie’s good buddy. What an occasion!!! 💙💛💙 • This evening I attended a Columbus Buddy Walk meeting with many other team captains to check out the new location at The Fortress! You do not want to miss this event. The space is going to be awesome for tailgating, walking, and all the super fun activities, including touch-a-truck, face painting, a bounce house, mascots, and cheerleaders cheering on these amazing people we have in our lives! I never knew that this is where we’d be, but now that we are here I wouldn’t change a thing. • Buddy Walk funds account for HALF of @dsaco_cbus operating budget! Help support the truly terrific work they do by joining us on September 29 at The Fortress or by making a tax deductible donation at the link in profile. Check out my stories for more pics from the day. • #raisinglittleworldchangers #morealikethandifferent #buddywalk2019 #dsaco #nothingdownaboutit #shouttheirworth #wouldntchangeathing