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Not so rare, and definitely not alone.

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.

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

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Transplants and Down Syndrome

This fact makes me incredibly angry. When we were first discussing AJ’s diagnosis, so many people would ask us why he couldn’t “just do a heart transplant

And the short answer was - because Iowa isn’t one of the few states that protect against this kind of discrimination.

In fact - the only states that do are listed below:

California (AB 2861) (1996)
New Jersey (SB1456) (2013)
Maryland (SB 792) (2015)
Massachusetts (Chapter 328) (2016)
Oregon (HB 2839) (2017)
Delaware (HB 21) (2017)
Kansas (HB 2343) (2018)
Ohio (HB 332) (2018)
Pennsylvania (Act 90) (2018)
Washington (HB 5405) (2019)
Louisiana (HB 143) (2019)
Indiana (SB 112) (2019)

Notice something a out those? Most of those states only adopted those protections in the last few years. At the time AJ was born, there were only three states on this list.

Now - I’m AJs case there’s would have likely been other contributing factors, like his pulmonary hypertension, but the fact is that nobody even looked that far. Once he had the official trisomy 21 diagnosis, our options for treatment, or at least the manner in which people talked to us about our options, shifted.

There is definitely work left to do in this area. I don’t believe that a persons diagnosis of Down syndrome alone makes them less worthy of receiving care or support than anyone else, and will continue to push for better protection from discrimination and awareness.

#DownSyndrome #Transplant #downsyndromefacts #trisomy21 #t21fam #stopdiscrimination #MoreAlikeThanDifferent #DownSyndromeAwarenessMonth