This is Down Syndrome

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This is Down Syndrome
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The Lonely Side of Down Syndrome

If someone were to ask me what it is like to be the parent of a baby with Down Syndrome, I would compare it to riding the world’s fastest roller coaster with no seatbelt. There are highs, lows, head spinning spirals, but most of the time you are just going along hanging on for dear life.

I realize that this seems absolutely crazy for most people to hear, but I tend to forget, in a sense, that Ace has DS. You see, after a while, I sometimes don’t even see it when I look at him. To me, he looks like any other baby and most days our family feels like any other family.

But we are not any other family. We are different. No matter how much I may forget and view us through my rose colored glasses, there are days that the real world comes crashing down and I am reminded just how different we are.

The truth is that sometimes I get envious when I see your 7 month old baby sitting up all by himself and my 9 month old still isn’t able to.

The truth is my head starts spinning when I call Ace’s name 3 times and he still doesn’t turn his head to respond to me. My mind immediately goes to all the things that could be wrong and within seconds I’m googling Down Syndrome + Autism or Down Syndrome + Brain Development and then it’s down a dark hole of “what if’s” that may never even be true.

The truth is I get totally overwhelmed when I’m preparing for my baby’s 4th surgical procedure in 9 months and trying to make sure I have coordinated with his four different therapists to reschedule anything he may miss. I long for the days that I didn’t need a planner just to try to keep up with all of the therapies and doctor appointments.

The truth is that I don’t feel like changing my shirt for the 3rd time in 15 minutes because he just spit up all over me again because even after spending 2 weeks in the hospital, having 2 surgical procedures, undergoing 3 swallow studies, having his very own feeding team of specialists, and still not even being on solid food, Ace is still struggling with keeping formula down.

And the hardest truth of them all is that I’m tired. I’m tired of smiling and telling everyone how everything is going great because the truth is having a baby with DS is lonely. No one can understand your life and you realize this. So rather than be a Debbie Downer, you fight those tears, put a smile on, and keep moving forward and just hope that the next roller coaster high is coming soon.

Please understand that everyday is not like this. These are the lows. We also have highs that the average family doesn’t get to experience either. We get to live with these angels of Earth loving us day in and out. For that alone, we are blessed beyond anyone. Just know that the next time you see that smiling mom with a child who has DS, behind that smile is most likely a lot more going on than you could imagine. #ThisIsDownSyndrome

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Best highchair for low muscle tone??#ColtonLane #DownSyndrome #NothingDown #BrittanysBasketsOfHope #ThisIsDownSyndrome #down

Hard to believe but my little man is almost ☝️!! Looking for the best high chairs for low muscle tone. I’ve googled yes, but would rather have recommendations from all of you! Thank you in advance!

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How the Media Failed Down Syndrome

We are adding our voice to a matter that is being discussed with great emotion in the Down syndrome community. We have been very fortunate in being able to share our daughter’s prenatal Down syndrome diagnosis story on some amazing platforms. But recently it felt like some of our hard work was undone when the Today Show, with a much larger platform, broadcast a story about Olympic gymnast Shawn Johnson and her “pregnancy scare” that occurred when they thought her baby might have Down syndrome.

Natalie Morales narrated the Today Show segment saying: “Then came the news they had been praying for. The tests were negative for Down syndrome”. Shawn and her husband posted, very beautifully and heartfelt, that they would have loved their baby (Down syndrome and all) but that they just wanted it to be “healthy”. ⁣ ⁣

But this is the problem. The Today Show had an opportunity to correct misperceptions. To tell the world that a baby with Down syndrome can be as healthy as a baby without it, but that no baby is ever truly safe from health risks. To encourage people to remember that while a Down syndrome diagnosis is scary and emotional, that a baby with Down syndrome is still a wonderful, beautiful, human baby. Instead they used language such as “risk, scary, healthy, relief” and “uplifting update AFTER pregnancy complications”.

Any parent working through a diagnosis would see the message being reinforced that a diagnosis of Down syndrome is scary and undesirable. These messages are exactly what made our experience finding out our daughter Gwendolyn’s diagnosis last year when I was 11 weeks pregnant so completely and unnecessarily devastating. ⁣ ⁣

Can you imagine the Today Show celebrating a baby for being “healthy” in relation to sexual orientation, skin color, gender, or ethnicity? When are we going to have social change and finally just wake up?

There has been much emphasis on the “me too” movement, which is awesome, and we celebrate different races, colors, and sexual orientations. But people with disabilities are left bringing up the caboose. They are the last thought about, the most vulnerable, and in need of our voices the most.

We just wish the Today Show had done more, with this experience of Shawn Johnson’s prenatal testing, to help remove the culture of fear surrounding Down syndrome. We need to help parents work through a prenatal diagnosis in a healthier way. We, and so many others in our community, wish the Today Show had used this opportunity to spread a positive message about Down syndrome. Despite this, we know there is so much love being spread about Down syndrome from other sources, and we are glad to be part of that movement!

#DownSyndrome #DownSyndromeDiagnosis #PrenatalDownSyndromeDiagnosis #TodayShow #Media #speakup #ThisIsDownSyndrome

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So proud of Clara, my superdaughter!

Clara Loves Cooking! for her birthday party on December 10, she made some « sablés » and wanted to make everyone taste them! a delight! #ThisIsDownSyndrome #Cooking ##cookingwithdownsyndrome #DownSyndrome


#deardoctor film sparks movement in Down syndrome community

We often hear of the heartbreaking ways in which many families receive their child's Down syndrome diagnosis. Earlier this year, Nothing Down co-founders, Shannon Daughtry and Julie Willson, invited ten families to share their stories for a documentary on the overwhelmingly negative way in which medical professionals tend to deliver a #DownSyndrome diagnosis. This video has sparked a huge movement in the Down syndrome community! Thousands of parents are sharing their own personal #DearDoctor stories along with sharing this video. It’s gone viral in less than 24 hours which is so exciting for our community! And it’s even more exciting for the difference this could make for future parents receiving their child’s diagnosis.  It is our goal to change the narrative and to work with the medical community to ensure that EVERY parent is delivered their child's diagnosis with compassion, up-to-date education, proper resources, and #hope. We believe that this film has the strong potential to ignite a much needed change for future parents.
We want you to #JoinTheMovement! Please take part by posting this video along with your own #DearDoctor moment, sharing with the medical community how your diagnosis was received and offering suggestion on how to make it better.
Thank you to the families involved for sharing your stories with the world. We are so grateful to each and every one of you. #BeTheChange #jointhemovement #ThisIsDownSyndrome #NothingDown #unexpecteddiagnosis


What wasn’t mentioned is worth mentioning

I kept seeing the cartoon depiction of a child and a man with a ginger colored beard on IG and didn’t understand what it meant until I saw this video today.
What I noticed first about it is what my heart is full of and what I want to spread... LOVE! The second thing I noticed is there is no mention of this precious child having #DownSyndrome .❤️🙌🏼
The video shown here isn’t about a diagnosis or a title! To me, it represents what this child and #PrinceHarry have in their hearts and who they are!
I have struggled with the question to mention DS or not to mention DS when it comes to Savannah. So, sometimes I do, sometimes I don’t!
I don’t want to talk so much about Down Syndrome that I attract more attention to the diagnosis than Savannah herself!
Yes, I want to advocate for Savannah and those that are differently abled! I want to educate those that know nothing about DS (like I used to be). I also want to encourage others that have recently received a diagnosis while being to them the person I once needed.
The purpose of my blog posts and IG feed posts is to show the diverse family we have, real life stuff that is apart of our journey, and overcoming obstacles is possible! We just have a little something extra that is apart of our journey.
Even though DS is what #SavannahLanier has, it isn’t who she is and it’s not what our family is.
I pray our journey and our lives reflect the love of God and the beauty depicted in this video, whether DS is mentioned or not. #StrongerTogether #Love #Diversity #HumanRace #MoreAlikeThanDifferent #BeTheChange #TheLuckyFew #nothingdownaboutit #DownSyndromeAwarenessMonth #October #United #Momlife #Momblogger #ThisIsDownSyndrome #WeAreTheChange #WorldChangers #ComeTogether #LetsDoThis #Bekind #advocate #Acceptance #IWillShoutYourWorth



I never heard a discourag word from a doctor, nurse family or friend The social wor in the hospital told me to celebrate my daughers birth like all others ! My ped told me to breast feed and the genetist told me that her patients with down syndrome were acting like very typical teen agers deciding what colir nail polish to wear We were very blessed that we never heard a discouraging word and I probably would not have listened



Every time I go out and see a young child with Down syndrome, I want so badly to go introduce myself to their parents. I want to say “hi, my sister has Down syndrome, and don’t worry - they’re just as sassy when they’re 15, extra chromosome or not.” I want to tell them how she still calls me names, tries to tackle me when I annoy her, and yells at me for eating her fries. I want to let them know that despite what all the doctors told them, their child will lead a fulfilling life with all the ups and downs associated with growing up. But most of all, I just want them to see that this diagnosis, it doesn’t hinder their child - it’s creating connections with a whole community of supporters and cheerleaders, people like me.


New to the DS world......

My son and daughter in law found out that their first baby, a boy, in utero at 13 weeks has Down syndrome. We were shocked as she is only 29 and their chances are 1 in 824.  However, now that we know and are more used to the idea, we are so looking forward to meeting him in 2/19.  It is so helpful to hear how 'normal' kids with DS are.......everything on their own timeline!  I love that!!


More Alike than Different

Wyatt got his helmet today and the build up to it just about broke this mama’s heart. As usual, I spent way too much time on Google and came across so many (seriously, SO MANY) stories of other moms whose babes needed a helmet and what crushed my soul the most was how many wrote about “being afraid” that “other people would think” their baby had “a mental disability, or “a developmental disorder.” Here’s the thing: Wyatt does not need a helmet because he has Down syndrome, although it would be totally fine if that WAS the reason. He spent 67 days in the NICU, the majority of that in an isolette (we could touch him through the port holes and on good days, do skin to skin). As hard as we worked on positioning there (and when we got home) it resulted in a flat spot. A flat spot is bad for many reasons, including it can make his ears go out of alignment which would make wearing glasses (likely for him, someday) a challenge. The thought was that he’d have a growth spurt and grow out of it but said growth spurt hasn’t happened, so here we are. And here’s what I want my fellow helmet mamas to know: yes. My son has a developmental disability. And he needs a helmet like yours, who doesn’t. They are both just babies getting their noggins fixed. And they are more alike than different. #morealikerhandifferent #ThisIsDownSyndrome #tour _de_Wyatt #dsam #downsyndromeawareness #MightyTogether