trisomy21

I wear many hats these days as the Dad of our 3 year old “Amazing Abby.” I am her educator, entertainer, chef, cleanup crew & personal trainer. In November of 2019, I took a leave of absence from my job to became a full time Stay at Home Dad (SAHD). I had no idea what was in store.

Abby was a 78 day Children’s Hospital of Philadelphia (CHOP) NICU grad. Our 3lb miracle underwent surgery for duodenal atresia about a month after she was born. Flash-forward to today…this fun loving, energetic, world traveling three year old is the center of her our world. I always say “she is the light of our lives.”

In April 2020, Abby’s CHOP Physical Therapist mentioned having Abby start treadmill training. “Wait what?!?” I thought. My one year old. ON A TREADMILL. She was barely cruising! Abby’s therapist ensured both of us that it could be done and the benefits are exponential. So my wife and I went all in on treadmill training.

Since we could not access CHOP’s PT Gym because of COVID, my wife engineered a “MacGyver” style set up that includes two bar stools, one five iron & lots of duct tape. This has allowed Abby to effectively use our home treadmill. After breakfast, Abby jumps on the treadmill and watches a little Sesame Street on the iPad. This activity has been really instrumental in helping Abby to walk strong on her own. Not to mention I get the benefit of watching a little Sesame Street too.

Seeing the strides Abby has made in 3 years are so rewarding. I certainly understand that more challenges await with Abby’s development but I am hopeful that the work we are doing now will allow Abby to flourish into a strong, accepted, & admired member of our society.

Thanks for this opportunity to share.

#DownSyndrome #ds #t21 #trisomy21 #PhysicalTherapy ##PT #treadmill #treadmilltraining

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

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

Please follow my girl’s Instagram blog.. instagram.com/kinda.kilany
we document her journey with #DownSyndrome through pictures and videos ♥️
#trisomy21
#downsyndromeawareness
#nothingdownaboutit
#NotBroken

There are lines of clothing that have been developed by and/or for individuals with Down syndrome.

We have struggled in a few areas with AJ when trying to find clothes as well. Pants are often too long, while shirts are too short. All of those cute two piece outfits that come together? Forget it - his top and bottom are definitely not the same size.

In part this is due to his shorter stature, which is common in people with Down syndrome. It’s also due to his low muscle tone. The lower muscle tone results in his belly sticking out further, as the muscles in the abdominal wall relax more than most people’s do.

NBZ apparel is a clothing brand that was developed by the grandmother of a child with Down syndrome. They feature pants that have shorter legs, lower fronts that read below the belly, and higher backs.

Add to this that fine motor skills can be difficult for people with Down syndrome. Things like doing buttons can be incredibly challenging.

There are a number of brands who have been adding adaptive designs to their clothing lines. Lands End and Tommy Hilfiger have adaptive lines that use magnets beneath buttons, so clothing has the appearance of being buttoned but is much easier to get on and off.

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#DownSyndrome #trisomy21 #downsyndromeawareness #SpecialNeeds #adaptive #AdaptiveClothing

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