TheLuckyFew

This school in Pennsylvania read my book, “Kelly and the Great Pinewood Derby" about Kelly, a boy with Down syndrome. They read the book to the entire Kindergarten classes. Now they have started building derby cars. The superintendent of their district was on hand to help cut the cars! Here he is with Drew!! This is so cool! They are getting prepared for a pinewood derby race they will have in honor of World Down Syndrome Day.

#downsyndrome #downsyndromelove #downsyndromeawareness #koala #Bullying #childrensbook #Kellyandkelso #Friendship #Kindness #Downrightperfect #trisomy21 #TheLuckyFew #t21 #stopbullying #Inclusion #SpecialNeeds #Books #Book #booksforkids #kidsbookstagram #booksforchildren #childrenbooks #childrenbookillustration #childrensillustration #kidsbookswelove #bookswelove #lovethisbook

One of the heaviest loads we carry as parents comes in the waiting. It truly does seem like we spend a good deal of our time waiting. Some waits are harder than others.

We may be waiting for pregnancy results, waiting for our baby to arrive, waiting for teething, waiting for sitting up, waiting for the next big milestone.

There are many things in life we wait for; some expectantly, some happily, some impatiently, some fearfully.

I have spent a great deal of parenthood waiting. The most difficult waits have been when waiting for test results.

I specifically remember when my daughter was born. Down syndrome was suspected. We had to wait two weeks for a blood test confirmation…two weeks that felt like a lifetime. When we went to the doctor and she told me the results, she just grabbed me and hugged me. I will never forget it. Never.

Waiting for a diagnosis, then waiting for this doctor and that doctor, this surgery and that surgery, this health issue and that health issue. It was all new and it was all terrifying.

Waiting teaches us things that we are typically too stubborn to learn otherwise. It teaches us patience (begrudgingly). It teaches us to lean on our faith. It teaches us to understand the importance of every small moment.

Living inside your head while waiting is not always a happy place to be. Waiting is hard. It can be heavy. It can be lonely.

I believe waiting teaches us so much. It doesn’t teach us the easy things, but it teaches us still.

It is so important to find people who are with you. Find people who will hold you in the waiting, people who will carry you in prayer, people who will listen without judgment, people who will drop everything and run to your side when you need them. It is important to know that you are loved and supported and heard. If you feel no one understands you, reach out to find someone who you can relate to.

The wait is heavy. Please don’t carry it alone.

#DownSyndrome #Waiting #TheLuckyFew

I’m Mary and this is Reegan! Reegan is 17 and I couldn’t be more proud of her! We are here to shout the worth of people who are other-abled!! Everyone needs a friend like Reegan in their life!
#DownSyndrome #trisomy21 #TheLuckyFew

My homie with an extra chromie is so excited to kick off Down Syndrome Awareness month and let the world be aware of just how awesome he is! We’ve seen a local tea place name their drinks after #TheLuckyFew . What have you seen to raise awareness?

Insights from a chat with another medical mama tonight:

👉🏻 We make the best decisions we can with the information we have. Sometimes we have medical studies and journals full of information and statistics. Sometimes we are trailblazers and all we truly know is our own kids. But we all do the best we can.

👉🏻 We try our best to balance the fragility of our kids lives with our desire to have them experience the world around them in a “normal” way. Sometimes it means that we take risks so they can participate. Sometimes it means that they miss out. Life for us is less of a merry-go-round and more of an off balanced teeter totter.

👉🏻 We can’t protect our kids from everything, even when we think we can. Even in a perfect school environment where nobody sends their snotty kids to school, kids are contagious before they show symptoms. Even if we pull AJ from school, his sister or his parents might bring germs home too.

👉🏻 We often want to blame others for unexpected outcomes, but in many cases it’s not truly anyone’s fault - and even though that’s really freaking hard to accept sometimes, it’s really important to learn.

👉🏻 Along with that — non medical parents, and parents who make decisions differently than we do typically just want what’s best for their kids too. I don’t want this to be a pro/anti vax post, but it’s a big parenting debate and makes a good example. People on both sides of the fence feel they are making the right decisions for their children, even if people on the other side of the fence think they’re wrong.

👉🏻 We feel judged for almost every decision we make. Even if nobody says a word, we can feel the judgment internally , “of course you should xyz, why would you do anything else?” And “I can’t believe you chose to xyz...”. Sometimes the judgment is real and spoken. Sometimes it’s all in our heads. Either way, it doesn’t serve us and we need to let it go.
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Looking back at this list, it really (mostly) applies to all parents. Not just medical parents. But those risks are definitely bigger when you have a medically fragile kid under your wing.

More on our site at www.aaronandambersfamily.com

#DownSyndrome #TheLuckyFew #HLHS #HypoplasticLeftHeartSyndrome #CongenitalHeartDefectDisease #CongenitalHeartDefectDisease #PediatricStroke #Stroke #Tracheostomy #subglotticstenosis

I had no idea how massive the Down syndrome community was until a few months after AJ was born.

Community, by the way, is absolutely the perfect word for it. There are so many support groups and Facebook pages. There are local and national organizations. There are even conferences where you’re able to learn from other parents and professionals, both on stage and in networking.

The community is incredibly supportive. We all have very different stories. Our kids have different health issues and different strengths. But Down syndrome parents truly seem to be a bit of a unique breed who consider anyone impacted by Down syndrome as family and love their children fiercely, sometimes even as if they were their own.

The people we have met through AJ and the Down syndrome community are nothing short of amazing, and we are thankful to have them in our lives.

If you have a child with Down syndrome, I strongly urge you to get to know other families in the area, the advice of “been-there-done-that” parents is some of the best advise you can get. (In Eastern Iowa - try Hawkeye Area Down Syndrome Association).

It’s how we learned where to buy socks and shoes that fit AJs AFO/SMOs.

iIt’s where we learned about the baby signing time app.

It’s how we learned about low tone resulting in our kids often having their tongues out and exercises we can do to combat it.

It’s one of the few places and groups we know we can turn to for any type of issue - health, behavioral, and there will likely always be someone who can step up and say “I hear you, I know it’s hard, keep on fighting.” And sometimes, hearing that from someone who has walked the road before you is the absolute best thing in the world.

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#DownSyndrome #DownSyndromeAwarenessMonth #downsyndromefacts #trisomy21 #t21fam #t21facts #NothingDown #TheLuckyFew #hadsa #Support #dsmom #dsfam #t21mom

There is certainly something to be said about the importance of seeing something being done for many of us when learning. AJ is definitely a kid who has to see something before he will do it or understand it.

This often applies to simple instructions, as well as more complex ones. For example as we have been focusing on him learning to walk at home, we have repeatedly modeled walking. We all had to be conscious of not crawling or scooting on the floor, and we would often reinforce our actions with words, saying things like “Mom is walking to the door.”

When around other kids, we do the same thing. “Chris is walking to the slide.” The more AJ sees other people - kids and adults - demonstrating the skills he is working on, the more likely he is to want to do the same things.

This works with school tasks as well - reading, writing, coloring, even imaginative play. The more AJ is exposed to his peers doing things, the more he wants to do them too.

As he gets older, being presented with the same curriculum as his classmates will likely continue to be important for his language development. It makes sure that he’s exposed to words and complex sentences that are at the same level as his friends. Even if AJ isn’t speaking language, his perception and understanding of what he is being told or of stories that are being read to him is incredibly impressive.

A few weeks ago a friend shared a story about her daughter finally understanding multiplication thanks to the support of one of her classmates explaining it to her in a different way and modeling it for her. In the general classroom, there are many children that have the opportunity to learn from each other. The same is not typically true of learning in a segregated classroom.

There are a whole host of reasons that inclusive classrooms and education are preferred by families with children who have Down syndrome in most cases. I’m barely hitting the tip of the iceberg, but hopefully you can see the point. (Ha, ha)

There are also benefits for the rest of the school and students. Among other things it increases an understanding of diversity and acceptance. Kids who will learn problem solving skills and how to better communicate....

And if AJ’s current attitude and approach to life is any indicator, they’ll certainly learn to enjoy the little things, the value of hard work, to continue to try even when things seem impossible, and to celebrating all of the milestones (no matter how small) along the way.

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#DownSyndrome #Inclusion #trisomy21 #t21fam #TheLuckyFew #Diversity

When we first came home with AJ, I was really self conscious about doing his medical cares in public.

I would take his stroller outside of the restaurant to suction him. I would schedule our trips into town and stores to be in between his meals and meds so that I wouldn’t have to do them in public.

It wasn’t because I didn’t know what I was doing, it was because I was afraid of offending someone else. It was because I had read stories from other parents who had been confronted by strangers, or were even asked to leave a restaurant because caring for their kid was “gross”.

I really wish I could go back to the me who thought that way and shake some sense into her.

First - I was setting a ridiculous example for AJ, showing him that he should essentially be embarrassed by his medical cares. I don’t want AJ to grow up thinking that he should try to hide himself from the rest of the world for any reason - medical or not.

AJ has just as much right to experience the world as anyone else. I would actually argue that he has fought so hard for his life that he deserves those experiences more than most. His medical needs should not hinder him from getting the most out of his life - even if that is just a trip to Target for groceries. (Well, except during cold/flu/rsv season when we go into lockdown, but that’s a whole different story!)

Second - If AJ needs to be suctioned, then he needs to be suctioned. If it bothers someone at a table in a restaurant, or in the waiting area at sports clips, then oh well. And the same can be said of him getting his meds and food.

Maybe it sounds harsh, but those meds and cares are what keep him alive. If it ruins someone else’s meal to hear a suction machine then oh well. That person will live just fine without finishing their loaded mashed potatoes. AJ, on the other hand, might not live without his cares.

Third - People in general really aren’t mean. They may look quizzically at you, or do a double take. They may turn around to see what the noise is. They may even ask a question or two. But we haven’t had one person say anything negative to us at all while we have been out and about.

In fact, we’ve had more of the opposite. People will tell us they think it’s amazing that we are able to get out and see the world with AJ. Or they will tell us how cute or sweet he is. We’ve even had strangers anonymously pay our bill at restaurants.

Ultimately, if someone has something negative to say or are offended by the medical cares he needs to have done while we are out and about, the real problem is that they’re missing out on seeing the truly amazing kid that’s right there in front of them.

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#DownSyndrome #trisomy21 #t21fam #TheLuckyFew #TrachMom #Trach #Tracheostomy #Gtube #blendeddiet #blenderizeddiet #medicalmama #SpecialNeedsParent #Awareness #Acceptance #targetrun