t21fam

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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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    Please include me...

    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.

    ——

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

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    Medical Cares Will Not Stop Us From Going Out in Public

    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.

    —-

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

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    Please stop using the R word!

    Once upon a time, babies, children and adults were diagnosed as mentally r-tarded. They were thrown into mental institutions. Parents, siblings and spouses were told there was no hope for those they loved who were r-tarded.

    That time really wasn’t all that long ago.

    The words “mentally r-tarded” have been replaced more recently with words like “intellectual disability” and “developmentally delayed”. Those new words are a much more accurate description of what life is like for people who have those diagnoses.

    Unfortunately the word “r-tard” was adopted as a slur, essentially used to insult someone or something by comparing them to someone who is “mentally r-tarded”.

    Confession - I used to say things like “that’s r-tarded” a lot. In fact one of my earliest roommates used to charge me 25¢ every time I used the word. I’m pretty sure she would have collected $5/week from me if I had ever actually paid her.

    At the time, I didn’t understand what the big deal was. I didn’t mean it as an insult to people with disabilities, it was simply a word that I grew up associating as a synonym to dumb, or stupid.

    But newsflash? It doesn’t matter if I meant it that way or not. That is the origin of that usage of the word.

    We wouldn’t accept an argument like that to normalize other slurs. Racial slurs, ethnic slurs, slurs about someone’s sexual orientation or their religion... it doesn’t matter where or how you learned it, but it does matter that it’s insulting to the people that it impacts.

    It doesn’t matter how deeply embedded into your mindset and language it is. What matters is that it’s hurtful to an entire population of people. People like AJ.

    And yes, we may have learned some bad behaviors in the past, myself included. Sometimes those things are even so engrained that we don’t always catch them before they’re out of our mouths. But that doesn’t mean that you can’t actively work to stop using it and to educate yourself and others about the why behind the movement to end the usage of the “r word”.

    #DownSyndrome #IntellectualDisability #Rword #SpreadTheWord #SpreadTheWordToEndTheWord #developmentallydelayed #trisomy21 #t21 #t21fam

    *side note for those who want to argue for using the word to mean slow down - as in a musical sense or a speed sense - technically, that’s still an appropriate use of the word, though it’s a bit of a stretch since most people don’t use those words commonly anymore*

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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