On the Pedestal: the Down syndrome Community, Stereotypes and Glow-Spins

As you read this post, please be aware that this is a muddle through a thought process that has evolved. The second part to this post is HERE

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There was a couple that visited our local Down syndrome Connection. The woman was pregnant, they had a 2 year old daughter who was also present. They had come as they had just received confirmation via amniocentesis that their 18 or 19-week old son was coming with an extra 21st chromosome: Down syndrome.

It took us a while to realize that they had not, in fact, already decided if they were going to keep the child, or if they were going to abort.

It also took us a while to realize that they were there, watching us, using our children as a litmus to decide whether or not they would terminate their child.

As pro-choice as I am, there is something really horrific about thinking that someone might go ahead and choose to end their child’s life because they didn’t like the way that my child was thrusting her tongue.

We were being analyzed while we were on a pedestal.

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The pedestal is now where I sit and where lots of others bloggers by and for Down syndrome sit. We sit on it and think about what our words are going to mean to someone reading them. You know, “are they going to want to abort their child because I’ve just written that my 3-year old with Down syndrome isn’t potty trained?” – we know that for those looking for information, every little bit that we put out there can literally mean a life.

So we want our truth to glow.

And we don’t want to perpetuate stereotypes because those are just so…. so old and boring. Spun out and tired and we remember how our own gag reflex was triggered when our babies were really babies and people were spinning the happy-Down syndrome-angel-baloney. Or the special-kids-for-special-moms-malarkey that still makes me involuntarily shudder.

We don’t want the stereotypes and we want to present this glowing truth of our reality – and we do present a glowing truth of our reality! – and then we stumble on some stereotypes right on their little stereotypical heads. Our kids do or say or behave in some stereotypical way that people with Down syndrome are said to. They love hugging. Or they are crazy-good dancers. Or they bolt. Something – they do something that hits us up broadside with a resounding smack and we want to write about it, talk about it, get some feedback, throw that out there, “holy cow! does this happen to you?”  kind of thing, but… it’s hard to be really upfront about things when you know you are on a pedestal.

You know people are going to be judging you because you are supposed to be over and done with the stereotypes.

But stereotypes come from someplace, don’t they? They don’t just arrive out of thin air. It’s not to say that you need to believe them or that they are true – duh, of course not! – it’s that they come from someplace. They are not utterly and completely without merit.

That “kids with Down syndrome are always happy” one? What they really meant with that was probably, “kids with Down syndrome are not always  happy, but when they are, their smile and joie de vivre seem like a joy-force of nature”.

Obviously, I haven’t met every kid with Down syndrome. I’m just talking about every. single. child with Down syndrome I’ve ever met: they are not always happy but when they are, Oh. My. God. Talk about a mega-watt bulb exploding in your heart from the power of their light!

As Moxie grows, she is growing into some of the few stereotypes for people with Down syndrome that I am aware of. 

She will bolt. She gets sensory overload from being around too many people at once. She is incredibly stubborn at times. She is the essence of ‘nurturing’ other times. She dances like nobody’s business.

For those of you that are looking at me on the pedestal right now, asking how I could possibly promote these stereotypes by saying that my daughter does this, what’s so different about what she’s doing and what a typical 3 year old does anyway? All 3 year olds are stubborn, all 3 year olds bolt, all 3 year olds can be nurturing and insanely gifted dancers…. right? But no. It’s not the same. It’s really not the same. The way in which my daughter will be stubborn, the speed and cleverness, the absolute lack of fear with which she will bolt, the spirit behind her tender nurturing… are all firsts for me.

I’m willing and wanting at this point to talk about this, even if it is seems like a ready invitation to criticize or question me for what some have said is a promotion of stereotypes. I’m willing and wanting to talk about it because this is the thing: having 3 copies of a chromosome does change things!

It does! It doesn’t change the fact that our children are beautiful and smart and deserve the same education, access, respect and consideration as their peers enjoy. It doesn’t change the fact that our children are really more alike the typically-chromosomed population than they are different.

But having an extra chromosome does change things!

What I’m struggling to get at here is that the things I want to know about – the things that make this tribe unique – the things that may seem more stereotypical than not – these are the things that will likely help us appreciate and value this tribe even more. The more we know, the more likely we’ll be able to one day say, “people with Down syndrome tend to have superior emotional-reading-ability; I want that girl on my team” – in the same way that people can say, ‘hey she uses a wheelchair; she’s going to notice things about the terrain that walking folk won’t; I want her outside-the-box point of view” – or even in the same way someone might want to hire a Japanese person because speaking in a stereotypes, they are culturally known to be able to work well in teams, to conform and to have superior gift-wrapping skills. Just sayin’

I think we need to be willing to talk – really talk – about what is different about our kids, what about them makes them unique. It’s so scary to do that though, because we are on a pedestal. We’ll be opening ourselves up wide to criticism within our own community, not to mention opening things up to the larger world out there that sometimes seems to be just looking for a reason to terminate T21 once and for all.

 I have a hunch that that is another reason why some parents of older kids don’t write as much and are not as vocal in our online communities. I get the feeling that some of them don’t want to put their truth and reality out there because it may not glow the way the truth from a parent of a newborn does. But everyone  knows that a newborn’s poop smells like milk – and that poop changes – what we don’t seem to allow in this community though is for the natural to happen: for poop to change. For the glow to be real, warts and all. 

I’m not sure what you think of this… but this blog is a space to talk. I’d love to hear your thoughts. My hearing aids are on.

***

Remember: the second part to this post? It is HERE.

 

Meriah
Meriah Nichols is teacher and artist who lives in a yurt off the grid. She is deaf, has 3 kids (one with Down syndrome) and a lot of chickens. She writes about travel, disability, and getting dishes done. She likes her tea Earl Grey and hot.
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#deaf mom, teacher & #disability activist, living in a yurt #offthegrid. 3 kids (1 with #downsyndrome), a camera and a lot of chickens. Never a dull moment
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50 Comments

  • I have to say, I really loved this post. I really agree with you about everything. Honestly when I’m having a “real” conversation with someone, I feel closer to them and these people I know aren’t judging me. It’s also nice to know that I’m not alone on this journey. Some will judge I suppose, but I also think that judgement comes from an insecurity within a person. I also think with more knowledge comes understanding. I don’t know if I’m making any sense but this post is definitely something to think about and I enjoyed reading it very much!

  • I really love this post, especially the parts about “poop changing” and the fact that you point out that some people have certain strength and powers of observation on the basis of their culture or their abilities/disabilities. And I will second you on the mega-watt voltage of happiness that eminates from a child with Down syndrome. No one, for good or ill, can miss knowing my son is HAPPY, crazy HAPPY, assuming he is so. Thank you for saying this out loud and allowing us the freedom to breathe!!

  • I’m so glad you wrote this! I often find myself talking to expecting parents and feel the weight of their decision on MY shoulders, or more accurately, on Carter’s shoulders. I am also a huge supporter of ‘ warts and all’ writing. I wish I saw more of it.

  • What about the fact that these occur with kids who don’t have three chromonones? Is it okay to say that all black people are good dancers? Or are good at sports? Could it be that we read the actions that our kids do as being typical to Ds because we’ve been conditioned to think this way? What about the fact that study after study does show that even so called “positive” stereotypes are dangerous? Honestly my life with Jude is good in the same way that my life with all my kid is good. What I want to do on my blog is not sell Ds by putting us on a positive pedestal but rather show people that having a kid with Ds is normal. It’s good but life with all my kids is good.

    • hey Ginger, no, I don’t think it’s a conditioning. Unless you take noticing that our 3 year old doesn’t talk much “conditioning”, or that other things that have a direct relation to a specific group of people who have the same genetic condition.
      I think you’ll understand more of what I’m talking about as Jude gets older. Right now, it’s not really different – I think as the child grows, more of what’s typical within the Ds framework becomes clear.
      I don’t mean that as a brush off – I really, really don’t. It’s just that I can try and explain this till my hands ache but you really won’t understand this till you experience it and you *WILL* experience it, one way or another, in a couple of years.

      • See, this here pisses me off: “I think you’ll understand more of what I’m talking about as Jude gets older.” Seriously, Meriah? Moxie is THREE. And you’re the sage expert now? Finn is five, and I’m not seeing the stuff you’re saying. And I have five kids who came before him, and his happiness, when he chooses to expose it, is NOT any different than any of my other kids’ happiness. I honestly think that so much of this is perception. But the “Just wait, you’ll see” crap? Knock it off, okay? It’s offensive. Who are any of us to tell any other parent how it’s going to be for their kids?

        • whoah! “sage expert?” because I say ‘wait and see’? HUH? chill out, Lisa.
          I’m not claiming to be an expert, but I am claiming to have had what I experience change a HELL of a lot from Moxie being 6 months old and being 3. Huge. Massive. Gigantic changes.
          I wouldn’t have believed it possible if anyone had told me that when she was 6 months old and I was writing my posts that were remarkably similar to what Ginger is now writing.
          Now, Ginger’s perspective could very well not change at all. Or it could. If it does, I’ll eat crow. But that doesn’t change the fact that a LOT can happen to shift perspective in a few short years.
          I think the ‘wait and see’ thing can be annoying as crap so I apologize for saying it. I’m not sure what else to say though, given what my experience has been.
          I also don’t really think it’s cool to say that my EXPERIENCE about something is a CONDITIONED response. Like, hello, yeah, Pavlov said my kid has Ds so all of the sudden I’m IMAGINING a delay?
          Whatever.

          • Delay and personality are two completely different things. Personality is very much open to interpretation and perception. Have you not considered that maybe YOUR perception is wrong? Or at least that it’s just that – YOUR perception? What makes your perception the right one? And of course children go through massive changes between six months old and three years old – pretty much ALL children do, Ds or not.

            You did not just say “Wait and see” (although even that has a condescending tone to it). You said, “It’s just that I can try and explain this till my hands ache but you really won’t understand this till you experience it and you *WILL* experience it, one way or another, in a couple of years.” You are making a concrete prediction, basically patting her on the head and saying, “You’ll see I’m right in a couple years, just you wait and see . . .” It’s offensive, and it leaves no room for a different experience/outcome. You really don’t see the problem with that? What gives? Why are you so intent on promoting this line of thinking? I don’t get it. I don’t like it. It’s damaging and offensive. I think we should all stick to “This has been MY experience.” “This is how I see it.” and “I have enough respect for YOU – and the randomness of the universe – to acknowledge that I have no freaking idea how it’s going to play out for YOU.”

          • I am absolutely intent on being honest about my experience, Lisa. 100%. You don’t have to like it. I’m not asking for permission from you or anyone else to write my reality. I’m not going to PC-ify every*single*thing about this either: Ginger WILL learn more about Down syndrome and how it will represent itself in her child one way or another, and that is a fact. I could go and say “maybe” and “it might” but if her child has Down syndrome – as she does – her child will grow and she will learn more as her child grows.
            But I’m sick of this lid capping the reality of what I see. You didn’t like it when I said that it’s like Moxie can see into my soul – because why? because you don’t get that feeling with YOUR kid, so I can’t say that about MINE? Even if it’s the goddamn truth? Screw that.
            And I can’t say that when my kid – or every other child that I have personally met with Down syndrome – is happy it’s like a mega-watt of joy (or whatever it was that I said to the same effect) – because why? YOUR KID DOESN’T DO THAT? I can’t write about my experience, I can’t talk about MY TRUTH because it doesn’t agree with YOURS?!

          • Meriah, you absolutely SHOULD write honestly, and nobody is telling you not to. Yes, Ginger will learn more about Down syndrome and how it presents in HER kid as time goes on – as we all do – but you seem to be pushing a universal picture, and that’s where I have a problem. You’re not just expressing YOUR truth, and YOUR experience, and YOUR observations – you are selling them as THE Universal Truth. “Every. Single. Kid” you’ve met with Ds has had that “mega-watt” depth of happiness. Really? What if you met Finn? What if you met Finn and said the same thing about him? I would tell you that you’re way off, because it’s not true. I would tell you that it’s only your perception, and that my perception is different. So who would be right? You, who seems to see this Universal Truth about Ds, or me, his mother, who has lived with him every single day for five years? And are you going to tell me to “just wait and see . . .”? Are you? And you can say Moxie looks into your soul until the cows come home – I really don’t care. What does it mean, though? That she has supernatural powers bestowed on her by those extra chromosomes? What is it you are really trying to say here? That our kids are different because they have Down syndrome? Yes, of course they are different. I don’t dispute that at all. In fact, I can’t stand the “More Alike Than Different” Campaign, because it makes “difference” out to be something bad. Yes, they’re different. But that doesn’t mean they are all the same as each other. It doesn’t mean they have super powers. It doesn’t mean they all have a super capacity for happiness.

            Talk about Moxie. You are the expert on her. But when you start grouping all kids with Ds together by personality traits, I take issue with that. Not because I’m mad that Finn doesn’t have those extra wonderful qualities you describe, but because I think you’re diminishing their humanity.

          • Lisa, I haven’t met Finn. So please don’t go putting words in my mouth about what I’d say.
            And you are forgetting the fact that I wrote “every.single.kid THAT I HAVE MET”.
            I MET THEM.
            I formed my opinion after meeting them.
            AFTER MEETING THEM.
            This is an informed opinion – I am not jumping to some universal conclusion. I clearly said, EVERY SINGLE KID THAT I HAVE MET.
            You’d have something to talk about if I hadn’t. But I did. And it is my truth, so I think you should back off and quit telling me what to write about.

          • I’m not telling you what to write about. Well, maybe I am. I apologize. You are definitely recasting what you said, though. NOW, you’re not being honest.

            You said you wanted discussion, and now you seem unhappy with that discussion. I’m going to exit the conversation now because it doesn’t appear to be going anywhere except downhill, and frankly, I don’t have the energy for a circle jerk.

          • since when is telling someone what to write a discussion? You are just TELLING me that I’m wrong, you are TELLING me that I’m perpetuating stereotypes – you wrote a whole blog post on this supposed perpetuation.
            Then called your husband out to sic me when I actually defended myself.
            If and when you can really discuss – and not just try and tell me what to do or say – you know where to find me.

      • You know I wasn’t going to comment again because it’s very clear that I am an outlier in terms of this community but I came back and wow just wow. THIS Is why I am so tired and done. I am a 41 year old mother of FIVE. YES FIVE kids and you’re telling me to wait and see? It is insulting Meriah and it’s a brush off. It’s telling me that I don’t know what I’m talking about and that my opinion is invalid because my child is a baby. I have NEVER pulled “rank” on you but I could. I could say :What do you know about parenting when you’re oldest is only 7″ but I don’t because each parenting journey is our own. Period. But here’s the thing I’ve been parenting for 13 years now, and two of my children do have special needs. I also don’t think they are walking stereotypes either. Nor are my kids typically Latino, etc. They are their own people and I REFUSE to box them in.

        I also want to gently suggest that telling me what I will experience is extremely…well…pretty dogmatic don’t you think? I suspect that my journey will not be identical to yours for a variety of reasons. One of those thing is social conditioning which you so readily disregard.

        Thanks for the “warm” welcome. Maybe when Jude is older I’ll finally be given some validity.

        • I very much agree with what Ginger and Lisa have expressed. I’m not comfortable with the suppressed individuality as far as this random talk of a ‘tribe’ comes in. I resent a message of homogeneity when there is is clearly one of individuality available.

    • I couldn’t agree more with Ginger. An important distinction is the difference between stereotypes and generalizations. There are some general characteristics of children with Down syndrome beyond the physical markers. But in no way does that mean all kids with DS will have all those characteristics all of the time.

      A stereotype limits a person or a group of people to a caricature that is overwhelmingly proscribed by other people. It’s a way to hold some people out as “other” and make their humanity less important than that of the person applying the stereotype. The classic example is the “Noble Savage” often used to describe indigenous populations once they’ve been safely conquered and are no longer a threat to the population who conquered them. That the US population of Native Americans has a substantial problem with alcoholism may well be genetic, but is also undeniably a product of poverty and a marginalized existence in the larger society and those problems are directly the result of stereotyping an entire population. Today, the “drunken Indian” stereotype is the flip side of the coin of the the “environmental Indian cheif” stereotype (remember the one who cried in the anti-pollution commercials in the 1970s?).

      If we allow the sweeter than sugar DS kiddos/blessed mama stereotypes to persist, each and every person who does not fulfill that unattainable standard will be written off as the opposite stereotype: i.e. should be aborted, should never be a parent.

  • It’s funny you say this, because when I talk to people who try to say how “typical” it is to be a runner, or be stubborn. It is indeed much different! I had 3 children before Jax and Arina. While one was a wanderer, he did not move nearly as fast or purposeful as Arina does! She escapes faster than any child I’ve ever seen. So I hate it wen people say, oh I had a runner to, and he doesn’t have Down syndrome! Well darlin, I bet it’s much more different than you think!

  • Excellent post!! And I agree with what you said about that stereo type about our kids always being happy. I don’t think people mean that literally either. What I think they are trying to say is they notice something different tends to radiate from our children…And it’s hard to put into words what exactly that is. But it’s there. At least I believe it is.

    And I do find it hard sometimes to talk about or write about the tougher issues I face when it comes to raising Russell. I am afraid people will think “That looks so hard”, or “Thank God that isn’t me”…I would never want for people to think raising a child with Down syndrome is sad or depressing. But the truth is it is not all sunshine and roses either! And my truth is raising my eight year old was harder than what I am doing right now with Russell! lol

    But I agree with you Meriah…We do need to stop worrying about what people around us are going to think. We need to show, and talk, about the real stuff. The good, the bad, the ugly.

    Loved this post!

  • I really think the community needs to relieve itself of the “termination burden.” Honestly, I think if a family has decided to terminate, seeing my kiddo’s tongue thrust, or lack of verbal communication, isn’t going to be the reason. It may just reinforce their pre-existing beliefs, but I have a hard time believing a visit with my child will make or break a decision that has such life-altering consequences.

    I also think this is part of the reason there are so few school age blogs. Even at 3 I’m slowing down on blogging because I’m finding a lot of what I want to say is not “ok” with the community. I want to talk about what it’s like to have a child that bolts. I want to talk about the challenge of tantrums caused by lack of communication skills. I want to talk about the fear of handing my child over to a school district that doesn’t seem to much care about her. Is it possible former bloggers ran out of time to write, or they just no longer feel a need to do so? Yes, I think that’s part of it. But I also think there is a hesitancy to lay it all out there for the world to see and judge – especially when you think “your own” are going to nail you for your own truth.

  • Yes and yes. My son with Down syndrome is 6 months old. I have been showered with lovely stories about how he’s a gift, but I am also hungry for information about what we’re stepping into. Last week I got the he’s-a-baby-first lecture from a doctor–which was helpful to hear in the first three days after his birth, but now it just comes off condescending. Yes, of course, he is an individual first. He is my baby first. He’ll teach me more about Ds than anyone else, I know that. But I also want to be aware of where the honest resources are in our community for the joys, the gripes, the differences we’re going to experience.

  • Clearly you’ve not met Finn. Seriously – every single kid you’ve met with Ds displays “mega-watt” happiness (when they’re happy)? Finn has a variety of moods, but when he’s happy, it is absolutely no more extreme than when any of my other kids is happy. I agree that having Ds – having an additional chromosome in every cell of the body – makes a person different in many ways than a person who doesn’t have Ds – totally agree with that. But as soon as we start buying into stereotypes – however “positive” they seem, we also buy into the notion that it’s okay to rob different categories of people of their individuality. So much of it is perception – what you see as “mega-watt” happiness someone else might see completely differently.

    I do agree that we should be able to write honestly about life with a kid with Ds – the joys as well as the struggles as well as the mundane – but I absolutely think this can be done without promoting stereotypes which, in the end, serve nobody.

    • Yep, every.single. kid I’ve met displays the ‘mega watt’ happiness! I’m definitely not saying anything about always happy, oh no. No way. But man, when the kids with Ds that I’ve met – when they are happy – WOW. that’s all I can say…

      There’s got to be a way, yeah, for exploring this stuff without promoting stereotypes. But this is the thing: why are stereotypes so inherently bad? Aren’t they bad when they become used as a tool with prejudice? Like, saying, this is SO and you are SO and this is must be the way it is. This is who you are. ?

      I’m not saying I’m pro-stereotypes, but I was raised in a place that was liberal with the application and use of them and it wasn’t a big deal because we didn’t actually judge people based on the stereotypes. It was more of a laid back kind of measure. I can totally say with ease that I fit a lot of the stereotypes of a deaf person – and I do qualify for the ‘deaf advantage’ with art. I don’t know. I don’t have answers here. Just a lot of questions: why is it bad. What makes it bad. We need to talk more. I want to know more.

      • Hi Meriah,

        I am an outsider from the down syndrome community, so I have not been privy to many discussions about this. However, I have heard the stereotypes.. And the problem that I have with stereotypes (not just with Ds) is that it sets people up for failure. Let’s say I met I met a girl Ds. What if she wasn’t a happy child? Or maybe she was, and I saw that goofy grin and heard the laughing thunder. That helps reinforce the stereotype in my mind that all children with Ds are happy. It’s not bad that the girl is like that – but because that is what I was taught, it is what I expect (in fact, this was one of the first things I was told when I first came across a child with Ds) By now, the stereotype is in my brain and it’s what I think all kids with Ds should be like. Then, what if the next child I meet with down syndrome is not happy? My expectation is for him to fit the stereotype, and It will set him up for failure, because he will not be the way I understand or expect him to be.

        If I had heard no stereotype, I would not be looking for specific qualities (good or bad, purposefully or subconsciously), and then the child could not fail expectation.

        I understand that in this example my expectation sets him up for failure. But in this case, the expectation comes from the stereotypes that have been perpetuated. Especially for someone who has limited interactions with children with Ds.

        Basically, I think stereotypes – though I agree they come from somewhere (which isn’t really hard since we can all look at 2 or 3 people of the same race, religion, etc. and generalize that “they must all be like that”) – set individuals up for failure.

        I haven’t met your Moxie, Lisa’s Finn, or Ginger’s Jude. And it’s great that your daughter is happy. But that doesn’t mean the child with Ds over here is, and while the stereotype would not really hurt my expectation of your daughter, it could very well hurt how I see Arina, or Finn, or Jude. Because I know that the stereotypes only make it hard for me to see each one as an individual, unique human being with personalities and traits that are as different as the kids without Ds that I watch.

        Just my perspective.

        • My kid’s not especially happy (she’s two). I’m not especially happy. Ever. We’re Finnish. Does your article imply that being a sombre Finn is *less* than being a happy person with Ds? Or that she’s unlike everyone else with Ds? I’m pretty sure she doesn’t see into my soul, but you know, with her being Finnish and all, I can’t be sure.

          • Hey Tania,

            I have that post up still for context. It doesn’t really make sense to me to pick it apart any more than it has been already, as I said in the beginning of the post and again at the end, that my thought process on it all has evolved. This is where I am at now: http://www.withalittlemoxie.com/blog/stereotype-syndrome-one21/

            If you want to talk about whether or not it makes sense to understand the SYNDROME better, than that’s cool, but my terminology in this post was off, and I acknowledged it as I moved forward in the post on stereotypes/syndrome and One 21.

            PS.
            Finnish! My great-grandma was from Finland!

  • This is the comment I left on Lisa’s post about this: I guess I’m not sure on how I feel about certain stereotypes and things that are said with Ds. These are the stereotypes that I hate: “God only gives special babies to special parents; Kids with Ds are ALWAYS happy; She’ll be your easiest child!; Babies with Ds can’t breastfeed; Kids with Ds can’t learn how to read (or whatever they want to put in the blank)”. I’m ok with generalizations that are more common in Ds: can be more stubborn (this one is not true with Morgan, however); can bolt or wander with little safety concern (still true with Morgan and she’s 11 years old); Most are visual learners (SO true with Morgan! Without this information she wouldn’t have been reading in Kindergarten and now reading on a 4th grade level). etc. I just don’t think knowing that there are many things that they share in common by having the extra chromosome is marginalizing them as humans or devalues my child.

    • Heather, this is what I’m talking about. It’s by sharing the commonalities and talking about things that we can learn more – like how you taught me about the visual learning. I never would have known that if you hadn’t told me (- and thank you!). Bolting, I wish I had known – I had NO IDEA until Moxie bolted. None. I would have done more to have prevented it – and I think this should be common knowledge because the child can actually come to great harm if they bolt in the wrong time/place. Maybe the child won’t bolt, but knowing that kids with Ds have a propensity to will at least help with some safeguards.

    • But I don’t know how this got all twisted around to indicate that I am for perpetuating stereotypes? I really don’t understand that. What I am FOR is, learning more about our kids. Understanding the ways in which the extra chromosome will most likely present itself. That is it.

    • Heather I have a little boy that is 10 reading on a k-early 1st grade level. I would love any tips or advice you would be willing to share.

  • Meriah, I typically do not post on other people’s blogs (except for Mrs. Odie’s), but I went back and re-read your post above to make sure I wasn’t misunderstanding you. What makes it look like you’re promoting stereotypes is what you said here:

    The more we know, the more likely we’ll be able to one day say, “people with Down syndrome tend to have superior emotional-reading-ability; I want that girl on my team” – in the same way that people can say, ‘hey she uses a wheelchair; she’s going to notice things about the terrain that walking folk won’t; I want her outside-the-box point of view” – or even in the same way someone might want to hire a Japanese person because speaking in a stereotypes, they are culturally known to be able to work well in teams, to conform and to have superior gift-wrapping skills. Just sayin’”

    That really does appear to be use of stereotypes. If it’s not, then I’m not sure I understand. You want to be able to talk about these things, and yeah, that’s cool, but I guess I don’t understand what you mean by the above quoted passage. Sorry.

  • I currently don’t have a child with special needs – but am expecting and am very well aware that the baby I am carrying has a 50% chance of having a genetic disorder (not DS), while I could have had an amnio to confirm 100%, I chose not to because it wouldn’t change my decision to have this baby. All that to say I am very well aware of what I can expect medically, should we land in that 50% and what typical kids, adults who have that disorder can be like. Stereotypes? Yup. But right now that’s all I have to go by, until I’m living it…which I won’t know until the baby’s born and we start testing. I will say this, I am a mother to a boy. A very, stereotypical boy. He’s 20 months…and yes, when he’s older, that could change and he could suddenly like dolls, fashion and make-up…. But right now, he wants to throw things, destroy things, break things, get dirty, touch bugs, eat dirt, slap, hit, kick and bite. Oh wait, those are also stereotypes of a typical toddler/pain in the ass, and for all I know a toddler with DS. I’m not saying making blanket statements about one person or a group of people is always correct, but stereotypes come from somewhere….it’s not necessarily true for the majority of a group of people, but it perhaps is right for a group of people, or enough of a group that this conclusion was drawn. Is it true that all black people are good at basketball? No. But then again, statistically you look at the NBA and there are way more black players in the NBA than black hockey players in the NHL. (and as a Canadian, I can tell you we are a pretty diverse country, and basketball is a popular sport, James Naismith the “inventor of basketball” was actually Canadian, and our University teams, local teams have a higher percentage of black players than white and the reverse for our hockey teams). That might lead to someone to stereotype a young athlete into a particular sport based on race. Without any malicious intent, simply based on their experience, statistics or what they know. I guess I’m just trying to say is there is some truth (albeit small) to stereotypes. Just my two cents.

  • Hi Everyone, It seems everyone here has younger children with DS. My son just turned 21 so I’m sort of the odd woman out here….which by the way I ok with! 😀 I can say from my own perspective and the many parents I know who have children with different needs, there are no blogs because we are wore the hell out from fighting for the last 20 years. There have been huge changes in the last few years but it has also been done on a learning curve for all of us too and we did not always have the internet as a resource. Laws didn’t exist that do now and attitudes are changing although some slower than others. In addition, once our kids become adults it’s a whole new ballgame and it’s almost starting from ground zero with lack of resources, needs, and what now?? We don’t have a lot of time to write about the journey because it continues and evolves ALWAYS. At 18 boys still have to register for the draft (I was floored), they legally are adults like everyone else and you no longer have the same rights to medical records and many other things( this I found from a parent of an older child and about a VERY expensive Conservator ship needed) or how they cannot have assets in their name (enter a special needs trust fund, thank you to dear Abby for that one!). Basically, a very different kind of support system at the time.
    We have had this journey with several young men and women with DS. All have different skill sets that they utilize at different levels and in different ways. All have very different personality traits as do most children from different families. And they also have similar traits unique to DS.There have been many times I found that a comforting thought. Some potty trained easier than others, some read at a higher level, some are more athletic or artistic.
    BTW-none of Zakk’s friends who have DS or Zakk himself were/are runners….they all are extremely stubborn and can be extremely focused on things at times.
    I think what I have come away with our journey this far is that everyone does the best they can with what they have. Disability or not. We are human beings with commonalities and differences…Knowing all the possibilities of what might happen is impossible but it is important for everyone to have a “safe” place to talk about all of it. The journey IS different for everyone but it is easier when you don’t have to do it alone.
    I’ve often told people “I don’t need you to beat me up…I can do that all by myself!”

    • Hi Jean and Meriah! From another “odd woman out” I totally agree with the “wore the hell out from fighting” perspective. That’s really what all of this boils down to – perspective. We’ll all have different realities but we also have common threads because of our shared perspective as a parent of someone with an extra chromosome. We’re already in a minority on that level – I just get really frustrated when we turn on each other in such personal and heated ways.

      As for my two cents on the topic- the definition of syndrome (from Google) is: “a group of symptoms that consistently occur together or a condition characterized by a set of associated symptoms”. In this case, there are going to be similar characteristics (not necessarily the medical-ized word “symptoms”). Does that mean they are “stereotypes?”

      And yes, your perspective will change as your child (any child) gets older. Jean expressed it perfectly. The battles are different, fought on completely new grounds. I was so happy when Josh finished school – no more IEPs, no more teachers explaining my kid to me… Little did I know that was just one stage, and there were more to come. I try to write about everyday “Joshisms” that show how he inspires and teaches me still to this day (he’s 26) but also show that he IS “different” and that’s ok with me.

      The pedestal thing is a tough one to swallow. I’m not sure I’ve really dealt with that one. You’ve given me something to think about there and isn’t that the real point of blogging and sharing? I hope we can all continue to share our own truths and give everyone the space to express their own perspective. That’s the only way we’ll learn from each other.

      Thanks for writing! Keep it up!

  • I think it is funny how not only Lisa will jump in and stir it up.. But she will be the first to write on her post that she doesn’t believe in god and then in the next breath says, I let me children be open and learn. Does she not think that her belief in NO God doesn’t effect her childrens way of thinking. I have posted on her blog before and she has said, “This is My World and basically, if you don’t like what I say, then don’t visit”.. I would tell her the same. Nice touch that her husband had to jump in and start asking question. I have read her blog and the first time anyone questions, or calls her out she justifies why she said, what she said.. She sounds like a bitter person who always has to be correct and she most certainly is not. Of course, there are similarities to children with that extra chromosone. There facial features, I can tell when I child has DS, it isn’t a bad thing but yes (they have almond shaped eyes that is one big characteristic)… There is nothing wrong with what you said, if that is how you see things (this is your blog) you write and say what you want and if someone doesn’t like it don’t visit.

  • What “Ruffles my Feathers” is when someone will call you out on Grouping Individuals and they do the same thing when referencing “Christians”… and they do it all the time and then justify their statement by using the lame excuse of referencing their experiences with the Christians that surround them. How IGNORANT.. it is no different then your statement and your expereince with DS. I will stop (Grouping/Sterotyping the extra chromosone) when people stop (Grouping/Sterotyping Christians)… Talk about double standards!!! That is like me saying Athiest have no spirtual side and when bad things happen to them it is because they don’t believe in God. Which is a completely IGNORANT statement…

  • I find it really ironic that so many people are slamming Meriah on a post that talks about a reluctance to post about one’s true experience

  • Wow. Wow. And super wow. I’ve been thinking about all this for the past couple of days. I say good for you for opening up a discussion like this. It’s not surprising that it’s a controversial topic and that there will be a variety of opinions expressed, but I was a little surprised to see it get so personal. But I guess when you start stirring up things that people believe so strongly in, emotions run high.

    Personally, I only have 1 child and she is only 2-1/2. But yes, I do see a lot of things in her that may fit some stereotypes. Is that because she has Down syndrome, though? I don’t know, but I certainly can’t say that it is not. I realize that I look through the biased eyes of a doting mother, but I know that I am not alone in feeling that she has a mega watt glow. There is something about her that just isn’t like most other kids. There is a degree to her stubbornness and her defiance that is just different. And I think it’s pretty likely that once she really gets up and walking she’ll probably do some bolting. But can I make a call one way or the other that Ds is the cause? Not really.

    I like the idea of sharing our thoughts on whether there are commonalities. How else can we actually look at these things, or even start to consider the sides of T21 that may not be expressed in a way that can be studied medically? At the same time, these kinds of observations are completely subjective. Every one of us is going to look at these kinds of questions through the lens of our own beliefs. Someone that is looking for meaning and purpose and believes that their child is a gift is probably more likely to be looking for evidence of positive commonalities. And vice versa for those that want to deny them altogether. If as individuals we believe that some of these commanlities can be positive, then acknowledging some truth in them may not seem so damning. And really, as parents, we get to form these thoughts and ideas on our own. Just because someone sees something that could be considered a stereotype in their child does not mean that they are going to stop pursuing what is best for their child or that they do not see their child as an individual. I agree that stereotypes CAN rob groups of people of individuality and that that can be harmful. But we and our children will have the opportunity to challenge preconceived ideas in so many ways. I doubt that believing in our own child’s “inner light” probably isn’t going to prevent that.

    I don’t know the right answer. I can see some truth in many different perspectives. And I can value that we each have our own perspectives, our own beliefs, and our own children to support and believe in. And I think we are all doing that just fine. Who says we all have to be on the same page?

  • My daughter with Down syndrome is nine years old. I have three children, the oldest of which is seventeen years old. I’ve had my share of parenting experiences. In addition, I am a respite provider for two counties in my state. I have worked with (and currently work with) a NUMBER of children with Down syndrome. And yes, they do have commonalities (or stereotypical characteristics, if you prefer.) However, if you expect Joey to act like Matthew because they both have Down syndrome, the fault is on no one but YOU.

    Do you expect everyone with dark hair to have commonalities? What about people with blue eyes? Those with a college degree? All Christians? All gay people? All homeschoolers? All wives? All husbands? Of course not! Whether an individual has a disability or not, why would you expect them to act or be like anyone else WITHOUT GETTING TO KNOW THEM?! This goes towards an individuals preconceived notion regarding a group of people and not on actual individuals the person has had contact with. That being said, once you DO get to know someone, there ARE commonalities present. By definition, all those commonalities are tied together under an umbrella defined by the syndrome.

    When I was looking at adopting a child with Down syndrome, I spoke to parents of infants, toddlers, teenagers and adults. You want to know the common theme I heard from the parents of older adults? I was told to NOT look at their child to define the potential of MY child. There has been an explosion of discoveries in regards to therapies, resources and KNOWLEDGE in the last twenty years. For instance, MOST individuals with Down syndrome are visual learners. We did not know this years ago! However, because we have been able to assess a great number individuals with commonalities, we now know how to help and work with MOST individuals with Down syndrome. Why? Because they share that commonality.

    Stereotypes can be positive or negative, a lot of it is in how we USE them. If we use them to our advantage, we can help educate a new parent on the obstacles they MAY face. We can help society understand WHY people with Down syndrome MAY have certain personality traits or predispositions. We can figure out how to help our children excel and move beyond what previous generations may have been capable (or likely) of doing.

    Without these commonalities and our willingness to embrace them, we wouldn’t have behavioral plans. We wouldn’t have IEPs. We wouldn’t have new methods for helping our children live, grow and reach their potential. Stereotypes do not have to be a negative thing…it is all in how you decide to USE them.

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