Dear Future Mom...
March 17, 2014 9:29 AM Subscribe
Italian advocacy group Coor Down helped a pregnant woman understand what to expect with her soon-to-be born Down Syndrome child by gathering 15 people with Down Syndrome from various countries to answer her question.
I saw this the other day and loved it. One of the little girls that I babysat when I was a teenager has Down Syndrome. She is all grown up now, and is constantly recruited to events around the country as a role model for other young people with Down Syndrome who are figuring out how to live independently. She's just an outstanding young person.
posted by roomthreeseventeen at 9:36 AM on March 17, 2014 [3 favorites]
posted by roomthreeseventeen at 9:36 AM on March 17, 2014 [3 favorites]
Aaaand just barely averted sobbing on a Monday afternoon.
…helped my dad fix his bike OH MAN HERE IT COMES AGAIN--going to make another coffee.
posted by chococat at 10:18 AM on March 17, 2014 [2 favorites]
…helped my dad fix his bike OH MAN HERE IT COMES AGAIN--going to make another coffee.
posted by chococat at 10:18 AM on March 17, 2014 [2 favorites]
I was doing fine...FINE!...until the parade of mommy hugs at the end.
posted by Pater Aletheias at 10:21 AM on March 17, 2014 [4 favorites]
posted by Pater Aletheias at 10:21 AM on March 17, 2014 [4 favorites]
This was very interesting to watch from the perspective of a parent of a child with Down syndrome.
From a production standpoint, the text has the flow of something that was written by an accomplished writer and that the talent read what was in front of them rather than speaking in their own words. While that would be much more challenging to edit together, it would feel more authentic and less spoon-fed. It was also very interesting to hear the tone of a person with Down syndrome through several different languages.
Here's an aside - one thing that inevitably shows up on my daughter's IEP (which gets written towards the end of her school year) is how much more intelligible her speech has become. This is highly entertaining to me because there is only one way to actually state that with any kind of accuracy: with measured data on how well she is making the sounds. What really happens is a new teacher/aide/whatever has grown accustomed to decoding my daughter's speech.
So why is the speech of Down syndrome hard to understand? Part and parcel to trisomy 21 is low muscle tone. Your muscles pull against each other all the time to balance each other. For example, if you lie down on the floor and "relax" your shoulders will be up off the floor and inch or two. If you ask my daughter to do the same thing, he shoulders go completely flat. Carrying her as a toddler/younger child was a challenge because she could willfully turn herself into a sack of gelatin.
That said, unless you have mosaicism, your tongue, cheeks, mouth, and throat are all affected and have to work harder to make typical noises. Challenges can include sss/sh distinction, k's, hard-g, f and v, l, r, and so on. Still, some of the speech like the rolled r's stood out so well!
One thing that is changing and needs to be stressed: people with Down syndrome are still people and deserve to be treated that way. My daughter just had 4th grade science fair and it had to be a family effort: we guided her through the process and had her do as much of the work and make as many of the choices as was practical and still get it done on time. Did she learn much? Not really. She can't tell you what the scientific method is and how it applied, but she can tell you how she planted seeds, watered them, measured them, and wrote down her data. When the fair was put on, I shadowed her in the gym to make sure that she didn't touch things that she shouldn't (impulse control/executive function is a problem with her), and I can't tell you how many kids made a point of addressing her, including one girl who passed by her and said, "Hey Alice!" and gave her a fist bump after which both of them made little fireworks with their fingers and the went on. The kind of familiarity that leads to that level of comfortable familiarity was something I never saw growing up - congrats to her class and her school for making the world better and assuming out of the gate that she's a kid.
And for those who think that everything is sunshine and butterflies with personality, I let Alice know that I was going to take her shopping and would she please stop watching TV now and change out of her jammies and brush her teeth. Alice spent the entire next hour up in her room yelling at me about the injustice of my request and how she was going to call the police and how her mother said that this was not going to happen. Age 11 - completely expected tween behavior.
posted by plinth at 10:38 AM on March 17, 2014 [31 favorites]
From a production standpoint, the text has the flow of something that was written by an accomplished writer and that the talent read what was in front of them rather than speaking in their own words. While that would be much more challenging to edit together, it would feel more authentic and less spoon-fed. It was also very interesting to hear the tone of a person with Down syndrome through several different languages.
Here's an aside - one thing that inevitably shows up on my daughter's IEP (which gets written towards the end of her school year) is how much more intelligible her speech has become. This is highly entertaining to me because there is only one way to actually state that with any kind of accuracy: with measured data on how well she is making the sounds. What really happens is a new teacher/aide/whatever has grown accustomed to decoding my daughter's speech.
So why is the speech of Down syndrome hard to understand? Part and parcel to trisomy 21 is low muscle tone. Your muscles pull against each other all the time to balance each other. For example, if you lie down on the floor and "relax" your shoulders will be up off the floor and inch or two. If you ask my daughter to do the same thing, he shoulders go completely flat. Carrying her as a toddler/younger child was a challenge because she could willfully turn herself into a sack of gelatin.
That said, unless you have mosaicism, your tongue, cheeks, mouth, and throat are all affected and have to work harder to make typical noises. Challenges can include sss/sh distinction, k's, hard-g, f and v, l, r, and so on. Still, some of the speech like the rolled r's stood out so well!
One thing that is changing and needs to be stressed: people with Down syndrome are still people and deserve to be treated that way. My daughter just had 4th grade science fair and it had to be a family effort: we guided her through the process and had her do as much of the work and make as many of the choices as was practical and still get it done on time. Did she learn much? Not really. She can't tell you what the scientific method is and how it applied, but she can tell you how she planted seeds, watered them, measured them, and wrote down her data. When the fair was put on, I shadowed her in the gym to make sure that she didn't touch things that she shouldn't (impulse control/executive function is a problem with her), and I can't tell you how many kids made a point of addressing her, including one girl who passed by her and said, "Hey Alice!" and gave her a fist bump after which both of them made little fireworks with their fingers and the went on. The kind of familiarity that leads to that level of comfortable familiarity was something I never saw growing up - congrats to her class and her school for making the world better and assuming out of the gate that she's a kid.
And for those who think that everything is sunshine and butterflies with personality, I let Alice know that I was going to take her shopping and would she please stop watching TV now and change out of her jammies and brush her teeth. Alice spent the entire next hour up in her room yelling at me about the injustice of my request and how she was going to call the police and how her mother said that this was not going to happen. Age 11 - completely expected tween behavior.
posted by plinth at 10:38 AM on March 17, 2014 [31 favorites]
plinth, I read through your incredibly informative post thinking that you were a mother. I feel bad about that.
posted by ethnomethodologist at 11:03 AM on March 17, 2014 [1 favorite]
posted by ethnomethodologist at 11:03 AM on March 17, 2014 [1 favorite]
I was doing fine...FINE!...until the parade of mommy hugs at the end.
Ditto.
posted by GrapeApiary at 12:10 PM on March 17, 2014
Ditto.
posted by GrapeApiary at 12:10 PM on March 17, 2014
Yeah I was crying almost immediately, and I've never been particularly close to anyone with Down Syndrome (Down's Syndrome? I'm going with what Coor Down and plinth are using.)
And big thanks to plinth for his educational comment. I started wondering while watching this whether certain languages are easier for people with Down Syndrome to speak than others (which I imagine must be the case at least to some degree) and found that based on this extremely small sample size, the French sounded clear as a bell and comprehensible to me, even though French is a distant-second language to me.
I doubt that plinth is a linguist, but he seems to be pretty smart and invested in these issues so I'm curious if he has any answers to that. I obviously can't really imagine what my life (in terms of needs, desires, etc.) would be like with Down Syndrome, but I imagine that if there were a way to make speech and communication lass taxing, I'd be drawn towards it.
I hope none of this was offensive, I don't know that much about it and found this touching and wonderful and it just made me curious about things.
posted by Navelgazer at 12:35 PM on March 17, 2014 [1 favorite]
And big thanks to plinth for his educational comment. I started wondering while watching this whether certain languages are easier for people with Down Syndrome to speak than others (which I imagine must be the case at least to some degree) and found that based on this extremely small sample size, the French sounded clear as a bell and comprehensible to me, even though French is a distant-second language to me.
I doubt that plinth is a linguist, but he seems to be pretty smart and invested in these issues so I'm curious if he has any answers to that. I obviously can't really imagine what my life (in terms of needs, desires, etc.) would be like with Down Syndrome, but I imagine that if there were a way to make speech and communication lass taxing, I'd be drawn towards it.
I hope none of this was offensive, I don't know that much about it and found this touching and wonderful and it just made me curious about things.
posted by Navelgazer at 12:35 PM on March 17, 2014 [1 favorite]
I just sat up and went 'omg, plinth is on mefi!' because I have been reading his blog about parenting the very awesome Alice for a few years now. Plinth!
posted by viggorlijah at 1:44 PM on March 17, 2014 [3 favorites]
posted by viggorlijah at 1:44 PM on March 17, 2014 [3 favorites]
FWIW - I'm an armchair linguist. I always was to a certain degree, but having a child with speech and language delays makes the interest more motivated. For the most part, I've read a bunch of research, attended some talks (and Libby Kumin is an absolute gift) and done a lot of listening.
I speak decent enough French and my opinion is that certain sounds that are common between the languages are going to be just as challenging (hard g, s, soft and hard c, l, f, v, d/t distinction), some should be easier (r, for example), and some would be uniquely challenging like (eu and other sounds with a moué). To my ear, some of the speakers were very good, but they all carried a DS overtone.
Cognitive dissonance is seeing a person with many physical tells of Down syndrome (longer torso, short legs, epicanthic folds, sloppy gait, etc) walk up to a microphone and then speak with perfect articulation. When I saw this, I had a jarring pause while my mind pulled out 'oh, mosaicism'.
So for example, Carrie Bergeron (who I've met - she's a genuinely sweet woman), as tremendously clear speech, but she has a smaller midface and palate which makes her tongue appear larger (which proportionally to her mouth, it probably is).
posted by plinth at 2:07 PM on March 17, 2014 [3 favorites]
I speak decent enough French and my opinion is that certain sounds that are common between the languages are going to be just as challenging (hard g, s, soft and hard c, l, f, v, d/t distinction), some should be easier (r, for example), and some would be uniquely challenging like (eu and other sounds with a moué). To my ear, some of the speakers were very good, but they all carried a DS overtone.
Cognitive dissonance is seeing a person with many physical tells of Down syndrome (longer torso, short legs, epicanthic folds, sloppy gait, etc) walk up to a microphone and then speak with perfect articulation. When I saw this, I had a jarring pause while my mind pulled out 'oh, mosaicism'.
So for example, Carrie Bergeron (who I've met - she's a genuinely sweet woman), as tremendously clear speech, but she has a smaller midface and palate which makes her tongue appear larger (which proportionally to her mouth, it probably is).
posted by plinth at 2:07 PM on March 17, 2014 [3 favorites]
plinth: thanks.
posted by Navelgazer at 2:11 PM on March 17, 2014
posted by Navelgazer at 2:11 PM on March 17, 2014
A good friend has an older brother with Downs. Tom lives in a beautiful group home which he actively helps maintain, loves his housemates, goes to a job every day and once in a while even gets to a pro baseball game or a movie.
When his family visit, they often find him so engrossed in his daily life that he doesn't want to take time out to do things with them. And when he does, he overflows with stories about his friends and his job.
He's very happy at 62 and his life is more productive and more socially rich than that of nearly anyone that I know.
Thanks for posting.
posted by kinnakeet at 10:01 AM on March 18, 2014
When his family visit, they often find him so engrossed in his daily life that he doesn't want to take time out to do things with them. And when he does, he overflows with stories about his friends and his job.
He's very happy at 62 and his life is more productive and more socially rich than that of nearly anyone that I know.
Thanks for posting.
posted by kinnakeet at 10:01 AM on March 18, 2014
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posted by Fizz at 9:35 AM on March 17, 2014 [6 favorites]