#WDSD15: A Day in the Life with Down Syndrome

I’ll never forget those first couple days. I’d already started thinking that LP had Down syndrome but I hadn’t managed to utter the words. I thought, maybe, I’ll click my heels, wish really hard, and I’d be back from this alternate universe that seemed to be pulling me in. During the day, I managed to almost convince myself that I was, indeed, back in my sepia toned original life. Still had the same husband. Same kids. Baby, yup, same one I’d had a few days before I’d ever had the words “Down syndrome” enter my brain.

At night, things were different. In the dark, I’d hunch over my phone and follow whatever current my stream of consciousness took me. Try as I might, I just could not get a handle on what this life could be. I knew the dictionary definition of “developmental delay” or “low tone” but I simply could not grasp what that would look like. What would our lives be like?

This year for World Down Syndrome Day, I’m participating in a great project called A Day in the Life with Down Syndrome.  I also asked the Taters what they thought about living with their brother. Sparrow, of course was unable to say much despite that I know she has many thoughts and feelings on the topic. I’ve translated for you what I think she would say. I may or may not have taken some liberties there.

I hope that, through these pictures and my children’s words, people will see how Down syndrome in our lives just exists. We talk about disability in our house very often. Not in a holy-moly-we-have-a-disabled-child-now-what kind of way. Rather, as just a part of us. Just like we talk about race, gender, class, and other groups that apply to our lives.

Yes, Down syndrome and disability are real forces in our lives, I cannot and would not deny that. But it isn’t that alternate universe that I thought it was. It is this universe. This universe that you and I, reader, share. Turns out that no heel clicking or wishing for home would have mattered, because I was already home, exactly where I was supposed to be.

My pictures aren’t limited to a single day, but since I’m unable to sustain any kind of project for an entire day (I blame the kids), you’ll have to accept my piecemeal offerings and trust that I’m showing what is typical for our day to day lives. The Taters’ reflections are at the end, enjoy.

OUR LIFE IN PICTURES…

Picture focused on Sparrow with an alarmed expression, LP's face is blurry in the background, his hand is reaching for Sparrow's face.

Picture focused on Sparrow with an alarmed expression, LP’s face is blurry in the background, his hand is reaching for Sparrow’s head.

LP’s morning starts off on the potty, then tooth brushing, getting dressed (no I never get frustrated or lose my temper at this stage, never), all pretty humdrum little kiddo stuff. First thing in the morning, LP is usually looking for Sparrow, he loves him some baby sister time. He might not always get the whole “gentle” thing, but he gets points for effort.

2yo with Down syndrome (LP) in a green pajama shirt, sticking out his tongue. His 4 month old sister (Sparrow) watches.

Asian 2yo with Down syndrome (LP) in a green pajama shirt, sticking out his tongue. His 4 month old sister (Sparrow) watches.

When Sparrow was born, LP was still really on the fence about learning ASL. He had a handful of signs, but it seemed like it took forever for them to “stick” and become permanent in his mind. The sign for “baby” however, he got lickety split. It was also the first sign he generalized to other babies and even cartoon pictures. Ever since, he’s been all about signing. Like I said, he loves babies.

LP wearing a blue sweatshirt, cargo pants, and red Converse and his two older sisters walking in a line down the sidewalk, on the way to his school.

Three days a week, LP goes to something called the “Infant Development Program” at a preschool. It has that fancy title because it is funded through our Early Intervention services, but I refer to it as simply LP’s preschool, because for all intents and purposes, that is what it is. They have circle time, play with the rest of the preschool classes (made up of children with and without disabilities), eat snack, go for walks, ya know. Preschool stuff.

A woman sitting cross-legged, holding a board book in front of LP, who is pointing to different pictures on the page.

A woman sitting cross-legged, holding a board book in front of LP, who is pointing to different pictures on the page.

Twice a month, a speech therapist comes to our house. This is the only therapy we do. If you know anything about Down syndrome and therapy, you’ll know that twice a month therapy is very low on the therapy scale. This has been a very conscious choice on my part; I feel very strongly that there is a balance between this kind of push for developmental progress (I am actually not sold on the idea that therapy always changes children’s developmental timelines, but that is another post) and the happiness of the child and his family. Our balance lies somewhere in the “minimal therapy” zone.

A woman with three children (LP and his two big sisters) sitting in a circle, doing the ASL sign for "shark" as part of the nursery song Slippery Fish.

A woman with three children (LP and his two big sisters) sitting in a circle, doing the ASL sign for “shark” as part of the nursery song Slippery Fish.

They play, read, sing. I think from LP’s perspective, our speech therapist is a lady who knows a lot of ASL and comes with a big bag of awesome toys. From my perspective, she’s a resource to talk to about his speech development.

LP with his two big sisters under a fort made of a white sheet and various tables and chairs. LP is tilting his head and smiling.

LP with his two big sisters under a fort made of a white sheet and various tables and chairs. LP is tilting his head and smiling.

There are forts. There are fights. There are uncontrollable giggle sessions.

LP and his sisters in a large cardboard box, all doing the ASL sign for "shark" as part of the Slippery Fish song. LP is sitting on one sister's lap only wearing a shirt and underwear.

LP and his sisters in a large cardboard box, all doing the ASL sign for “shark” as part of the Slippery Fish song. LP is sitting on one sister’s lap only wearing a shirt and underwear.

Lately, there is A LOT of Slippery Fish being sung in our house. Sometimes I fall asleep thinking, “slippery fish, slippery fish, gulp, gulp, gulp…”

A white man (LP's dad) in the background. LP and one of his big sisters (Chipmunk) both sitting in a cart together. The cart has steering wheels in both seats, both children are pretending to drive the cart.

A white man (LP’s dad) in the background. LP and one of his big sisters (Chipmunk) both sitting in a cart together. The cart has steering wheels in both seats, both children are pretending to drive the cart.

On the weekends, we play, we do projects, we veg out.

Seven children lined up on a bed, all looking off in the same direction, watching TV. The children range in age from one to six.

Seven children lined up on a bed, all looking off in the same direction, watching TV. The children range in age from one to six.

There are fun times with friends. Really, really, cute friends.

LP in a swing, waving at the camera. He's smiling. It is a sunny day, and the park climbing structure is visible in the background.

LP in a swing, waving at the camera. He’s smiling. It is a sunny day, and the park climbing structure is visible in the background.

And days at the park.

Latke with LP sitting on his lap, holding a book. Chipmunk and Mouse sit close by, listening and watching their father read aloud.

Latke with LP sitting on his lap, holding a book. Chipmunk and Mouse sit close by, listening and watching their father read aloud.

LP shares a room with his sisters right now. We have family story time every night, then lights out. I know, you are just dying with jealousy at our exotic life, aren’t you?

WHAT DO THE TATERS SAY ABOUT THEIR BROTHER?  

Mouse (6 1/2 years old):
I like playing with my brother, even though he destructos our games. Sometimes it is frustrating because he doesn’t always get our games. The thing I like most about him is that he is silly when he destructos. That’s funny because what I don’t like about him is also what I like about him. He gives really cozy hugs.

Chipmunk (4 years old):
I like showing my brother how to do stuff. When I show him, he does it back. It is hard to catch him when he runs away. He is like Rarity [from My Little Pony], except not, because Rarity can find special stuff but my brother can hide special stuff from other people.

Sparrow (4 months old):
Yes, that one, hm, what can I say. I think he’s suspicious. He throws toys at me and Mom is all brainwashed, she thinks he’s trying to “share” with me. And then there’s the thing where he’ll come over and start out holding my hand all gently, then that turns into a tap, tap, bang, bang, BAM! That sucks. But you know what is the worst, most suspicious part? Despite this constant threat of violence, I still smile at him every time he comes over, my face just does that and I can’t control it, I think I’ve also been brainwashed! I guess it is because it pleases me so much when he sings Slippery Fish to me, that stuff is fuuuunny. I pooped and need some more milk. Anyone? Hello?

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And there you go, life in the KimchiLatkes household! xo

DSDN is partnering with my friend Meriah from A Little Moxie to create a year long project called A Day in the Life with Down Syndrome. If you have Down syndrome, or know someone with it, I hope you’ll consider participating. The website will continue to be available for submissions past World Down Syndrome Day.


Christian Grey and Mean Princes

Mouse has been writing a lot of stories lately.  Her first story with any kind of recognizable story arc was about… A princess.  Of course.

It has had me thinking quite a bit about fairy tales, and the power of narrative over our lives.  It is a chicken and the egg question, of course, whether narrative informs our world or it is the other way around.  A realistic guess is that it goes both ways.

At any rate, my six year old has given me more to ponder than I’d ever expected.  Here is her story, with spelling corrected for ease of reading.

There was a princess.  Her name was Princess Rose.  Her palace is beautiful.  She found a prince.  He was not nice.  But Rose had always wanted a prince.  But she would not marry a mean prince.  So she stopped looking.

After a while she looked again.  The mean prince was still there.  She wondered why he stayed.  She said, “Do you wish you were married?”  He said yes.  She did not actually want to marry.  She was not talking anyone, until she couldn’t hold it.  They tried to marry until she said, I can’t marry. So he got on his horse and rode away.

After the mean prince left, she wondered, would she find another prince that is nice?  Yes, she did and his name is Tom.  They watched each other for a while.  This is this a new prince,” she thought.  She said, “Can we marry?” Tom said yes so they did.

Here is a picture of the first page that I shared weeks ago, before I realized her story was going to send me down the rabbit hole of contemplation.

Here is a picture of the first page that I shared weeks ago, before I realized her story was going to send me down the rabbit hole of contemplation.

So you can imagine that I was confused as to why Rose got engaged to the mean prince, fully knowing he was mean. I asked Mouse why this was.  Her answer? Rose did not want anyone to think that she was mean.  Not only that, Rose thought by marrying him, he would learn to be nice. Apparently, he couldn’t help that he was mean; no one had taught him to be nice.  Huh.

Suddenly, a voice in my mind recited, “Sugar and spice and everything nice, that’s what little girls are made of.”

It gave me real pause to consider that my six-year-old daughter already has gotten the message that women are expected to sacrifice themselves to others in the name of being “good”. She might not be able to articulate it beyond a little girl’s princess story, but it is clear to me that the message has been delivered.

Mouse explained more of the story to me.  Rose was extra careful the next time (this is why she and Tom “watched each other”), because she did not want to get stuck with another mean prince. I pointed out that if the new prince was mean, she could always choose to call off the engagement, or that maybe she doesn’t need to be with a prince at all.  Mouse repeated that Rose really wanted a prince. More importantly, if Rose kept calling off engagements, no more princes might come, knowing that she was so likely to say no.  Huh.

So Rose waits, protecting her reputation, and then makes the first move once she is confident.  Ok, I thought, this is good.  I liked that in her story, a good man can wait for the woman to approach on her own terms.  I’m so weary of unreasonable fairy tales that promise happiness for women who compromise themselves.  Little mermaid Ariel, change your body so you can find love.  Belle, go live with the mean angry beast to please your father.  Better yet, return to captivity and you’ll be rewarded beyond imagination.  Cinderella, don’t make waves for your father, endure abuse and neglect and one day a different man will pluck you from that hell and all will be right.  I could go on, but you get my point.  You can tell I’m not a Disney fan.  And don’t tell me that this stuff doesn’t matter because they’re too young.  Kids are sharp, they get it more than they let on.

I have been reading the commentary around the Fifty Shades of Grey movie, and while I think both sound pretty ridiculous (I did read the first book out of curiosity and vow not to partake any further), I can’t help but think, goodness, how is this not a fairy tale all grown up?  I’m not judging anyone’s fantasies.  What we imagine in the privacy of our own minds doesn’t have to be laid bare for public critique.  The question is more about what we choose to elevate, what grips us and why.  Virgin finds impossibly seductive millionaire with violent desires to control his romantic partners.  She surrenders against her better judgement yet all ends well.  Fifty Shades of Grey promises to be a dark fairy tale for adults, complete with a modern day equivalents of a palace, chariots, and even a dungeon.  It is the “bad boy” story that goes right.  But just as I’ve never heard anyone’s captor turning into a kind prince with a magical kiss, I’ve never heard of a real life example of an abuser miraculously reforming simply because someone loved him or her enough.

I can’t seem to get Mouse’s story out of my mind, because it reminds me that my children will one day meet mean princes and Christian Greys.  Men who might appeal to their sense of “good” in order to draw them into dysfunctional or, even worse, abusive relationships.  I’m glad that my daughter’s princess story doesn’t end with her surrendering to the mean prince.  Whether her six year old musings will carry over into her real life decisions, well, I lose some sleep over that.


Disability, Inclusion, and the Zombie Apocalypse

Look.  Contrary to how we seem to be acting, we are not actually in the zombie apocalypse.  Or, any kind of apocalypse at all. If you doubt my claims, I suggest you look out of your window.  Go on, peep.  Are there undead corpses roaming around?  Are there locusts and frogs raining down from the heavens?  The sky is up high and the ground is down low, right?  Oceans where you left them?  Phew!  What a relief.

I am so sick and tired of people justifying exclusion and discrimination by making it seem like we are in the end of days.  I mean, okay, for most of human history, the struggle to survive has been real.  Back in the day, we were romping about the earth in furs and spears, sure, life was more tenuous.  But.  That was a verrrrry long time ago.

In the last, say, two hundred years, humans have been ridiculously busy.  Anesthesia, dishwashers, photography, air travel, mechanized farming, the internet, nuclear power, toilet paper, vaccines, instant coffee, machine guns, antibiotics, contraceptive pills… These are all from the last blink of an eye in the timeline of human history.  Some good, some bad, some TBD.

With all that modern invention, we have gotten to the point that we collectively make 2,720 kilocalories of food for every person on this space rock of ours.  Yes, I believe it is true.  Yet somehow, huge numbers of us are starving and in poverty, because we can’t stop fighting and trashing the planet long enough to take care of our fellow human beings.  We are our own worst enemies.

In this country, especially, I cannot believe that we are arguing about lacking resources to address poverty, lack of access, and inequality.  We throw out more food than paper, plastic, metal or glass combined in this country, and we have the largest material requirements in the world (to support our apparently dire need of huge houses, extra cars, bottled water, etc.).  I mean, we are a nation that is willing to pay upwards of $10,000 for Super Bowl tickets, for crying out loud.

What about the “if everyone did that” argument?  If everyone were in a wheelchair?  What if everyone had Down syndrome?  If everyone were this, that and the other?  I concede that yes, if every single person on the face of the planet suddenly lost use of his or her legs, sure, perhaps we would be in a pickle.  If tomorrow, every single baby were born with a disability, yes, it would give me legitimate reason to pause.

These imaginary scenarios, however, are never going to happen.  This obsession we have about what the ideal human should or shouldn’t be has got to stop.  We are not all the same.  That is the genius of the human condition.  We are a diverse species, and that makes us strong.  Maybe it is wired deep in our brains to worry about this stuff because back in the day, it was an actual possibility that 3 out of the 5 good hunters in the clan broke a limb or succumbed to a disability causing illness, and then the baby born that year had some significant condition.  I get it, that would put the group in a real bind.  But look, the interwebs tells me that the UN estimates there are somewhere around 7 billion people in this world.  Between us all, we can stand to have a little variance.  And, we make enough food to feed every single one of us.  So is our situation actually so dire that people need to rant and rave in the comment section of every article about disability that “they” are sucking all of our resources?  It isn’t about lacking resources, we need better systems to make the world more equitable (and this issue is not limited to disability, of course).

Which brings me to my original point: the zombie apocalypse.  Given that we have left the period of human history in which we are living in truly tenuous times, I’ve tried to look into the future.  Would there ever be a time in which this irrational obsession with (actually not so limited) resources would become somewhat rational?  The only scenario I’ve managed to come up with is the zombie apocalypse.  Even then, I’m more of a “live together, die together” type of gal, myself.  But go look out the window again.  No zombies.  I’m even gonna go out on a limb and guess that there are no zombies in our immediate or even long-term future.  We are more in danger of irreparably trashing the Earth in the next few decades, in which case the zombies won’t even have a planet to overrun, so no worries.

I’m an optimist.  We can absolutely take care of each other, and in so doing, we will all benefit.  We can have a more inclusive society; the resources exist, the talent exists, some people are working very hard at it.  If we put more energy into supporting those efforts, I think we’d all be a lot happier.  Plus, in the off-chance the zombie apocalypse does happen, I think learning how to more successfully cooperate will mean we’ll have a better chance at surviving anyways, am I right?


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