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Moxie was chosen as a Tea Collection Ambassador, which meeeeeeeaaaans that they love her! And she loves them! It also means that they give her some of their great stuff from new lines so that she can test it out for it’s moxie.

She’s hard on clothes.

Tea Collection stuff holds up to Moxie’s big wheeling –

Big-Wheelin' with Moxie

and monkey-playing

hanging out

goofing around

and even the rare moment of quiet reflection


That dress is Moxie’s favorite, by the way, because: POCKETS!!

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You are still here?!!

Moxie graduated from Kindergarten almost a month ago, and I’m only just getting around to this post now. To be honest, if she didn’t have Down syndrome (- so, a lot of fellow parents from the Down syndrome community needing/wanting/hoping to see fun stuff like this) and if I didn’t have such cute photos of it all, I wouldn’t be posting!

The graduation ceremony itself is held at our local Grange.

The whole community comes together to eat a pot-luck dinner and hang out. The kids get together and play.

Two of these girls are Moxie’s best friends.


Here’s the back of her other best friend, Mack, in what he calls his “handsome jacket”

Moxie’s teacher is calling ORDER!

Then they all went on stage to sing:

Cute! So cute!  ( I wish I knew what they are singing…)

Mack, Mikey and Auntie Diane. Auntie Diane was the first person who was kind to us here, and is also the person who sticks with Moxie day in and day out at school and keeps her with busy with her R’s and from bolting. ♥

She’s capped and gowned!!!!

And so is her adorable class!

(I love these kids)

For parents who are nervous about their child with Down syndrome and school, all I can say is: PRESUME COMPETENCE.

Moxie has earned her graduation:

  • She reads.
  • She can compute (basic math).
  • Most of her skills are on-par with her typically developing peers.

She has Down syndrome – an intellectual disability – no doubt about it.

I want her to be defined by Down syndrome and not think of it as something to “overcome” – she doesn’t need to overcome it, it’s not a part of her to overcome. It’s a part of her that gives her a perspective and outlook on life that is her own.

My daughter, when I woke up on the morning of your birthday, you were awake already.

You had slipped out of your bed and headed straight for the art supplies.

After I kissed your sweet cheeks good morning (and gave you a hug), you said that the drawing was for me – “see?! MOMMY”

Ah! You had written, “mom” on it for me! And my heart melted, my love.

I love how you engage in your art anywhere, everywhere.

The way you open your mouth and try to swallow rainbows, because, RAINBOWS!

I love your curiosity, love of adventure and exploring.

You get your brother dressed and ready to “go on a trip,” leaving the house to travel down to the playground and pond.

You never met a tree you didn’t want to climb.

A forest you didn’t want to walk through.

A valley you didn’t run for

A space you didn’t want to run across

A plane you didn’t want to fly –

Or monkey bars you didn’t want to try and swing from!

I adore you.

I adore you completely, whole-heartedly.

You are the daughter I always wanted, brave and fierce and unafraid.

It comes to you naturally, without thinking. You just GO.

You see the wave and you want to ride it.

And then go back for more!

It’s as if you are on a quest to live as BIG as you possibly can.

Watching you with your brothers makes my heart swell with appreciation, gratitude and love.

You three have a bond

Nothing about your relationship is as they said it would be

“They” being the doctors who told us you were coming with Down syndrome, and “they” being false future-tellers who said you would be “a burden” of a sibling.

You give more than you get with them, teaching them to be bold, fearless, to live with a little moxie.

You teach them to act out dramas

Be adventurous, blow bubbles, dress up (because it’s fun), climb fences, sing with gusto, and – in the case of your older brother, you give him an opportunity to be kind.

I love you

I love your strength and your fearlessness, as also I love your tenderness.

my daughter with Down syndrome

I love your relationship with Daddy too –

If ever a daughter loved her father, it is you.

You know what you like

Be it time alone, drawing, running or CHEERIOS – you seem to have an enviable clarity of purpose and expression at all times.

my daughter with Down syndrome

I love that you play so hard that you literally pass out.

Moxie, my love. My precious daughter.

You came into this world 7 years ago. I was so scared of who you would be, how your extra chromosome would be expressed. I knew so little of Down syndrome, and had no idea that it would mean so much – but that the way that it would mean so much was different than what anyone said.

What it absolutely means to me now, 7 years later, is this: I don’t know how Down syndrome is expressed exactly in you, but it keeps me on my toes, both literally and figuratively.

I have to run to keep up with you.

I need to do my homework to make sure you can do yours.

I need to think about the world in new ways.

I am stretched past my comfort zones.

I am in a constant state of admiration over your beauty, joy, zest for life, and voracious appetite for adventure and fun.

I am so grateful for the gift of being your mother, and for being able to nurture and guide you through this life.

And I can’t wait to learn more about you and explore the world together.

Happy birthday, Moxie!

I love you now and forever.

I was like a snarling mama cat, clamouring for full inclusion until just recently. That is, for NOT having Moxie in a “special ed” classroom, in a classroom set aside in which all of the other children therein also have a cognitive disability.

Moxie learns by imitation, I thought, what sense does it make to put her in a room full of kids that are where she is? 

Right? I mean, since she really is a learn-by-watching kind of person, how is she going to learn to talk when she is around other kids that are mostly nonverbal?

And that might definitely be so. It very well may be. Because, like I said, she really does learn by watching.

But I applied my own deafness to this picture. I thought about how I felt, being the ONLY DEAF KID in every.single.classroom I have ever been in, bar none. The ONLY KID who couldn’t hear, then the ONLY ADULT who struggled through a thousand class sessions, millions of minutes focusing on lips, lips, lips, zonking out over lips, lips, lips in this endless quest to get it right, get it down, hear through watching.

I’m not going to lie: it SUCKED.

I got a taste of how awesome it can be to have a friend who is the same as me when Katherine came to work for my program at UC Berkeley. She and I were, I’m sure, completely obnoxious at work parties when we would “converse” with one another completely by lip-reading, emitting no sounds whatsoever.

It gets lonely when you are the only kid – or adult for that matter – that sticks out in some way.

You feel your difference. Hence, I suppose, the appeal of all-girls schools. Or black colleges.

And now, I think, for special ed classrooms.

***

I think for me it’s more important that Moxie has friends and she feels included, confident and strong than it is that she be all academically stimulated. This is surely a luxury on my part, that feeling, since it stems from my training and background as a teacher. I know I can give her at home what a classroom may lack, academically speaking. Even if it’s the learn-by-watching – she has two brothers, remember?

I want Moxie to know deeply and surely that her extra chromosome is a wonderful thing, bringing with it a bunch of uniqueness that is marvelous!

I want her to embrace who she is, love the gift to the world that her presence brings. I feel that pushing her one way or another – into a room with a lot of other kids with an intellectual disability or into a room with a lot of other kids without an intellectual disability – is not what I want to do. Rather, I want to feel out makes the most sense in a given place. Take each school and classroom on a case-by-case basis.

I want to see what she wants to do.

***

Perhaps that is the sticker; the stone in my wheel. The feeling that a lot of schools would not let Moxie see what she wants to do, or would not value her own opinion. A lot of schools won’t let individuals with a cognitive disability – or their parents for that matter – decide what is best for themselves. Education is not so much about encouraging beautiful minds anymore as much as it is about dollars and scores.

I’m distrustful of any system that wants to segregate anyone. I think the best and most logical conclusion is to integrate everyone. Because really, with all skills present in a class, with all types of individuals, with a full spectrum of intellect and variations in learning styles at play, kids are really going to grow. They’ll be pushed further by helping one another; they’ll see the strengths in those with cognitive disabilities, not just  a societal-defined weakness. They’ll learn that Moxie might not talk as much as they do but she can teach them a thing or three about getting what she wants. Like all people – ALL PEOPLE – she has skills and contributions that she is bringing to the table.

The question is simply if she will be allowed to contribute or will she be a token inclusion in her class?

***

There we go. A flawed system and an imperfect world. What I want does not yet exist and if I choose to send my daughter to school, my choices right here, right now, are a segregated “special needs” classroom or a “mainstream” classroom in which Moxie would need help in the form of aides and such.

I have no answers that are solid but I do know that as much as I loathe segregation, I want my girl to feel accepted and valued. If she found that in a special ed classroom and not in a mainstream one, well, then, I’d think about it.

A special ed classroom is not out of the question anymore.

_______________________________________________________________

  • originally posted June 18, 2013

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The Case FOR Special Ed: when does a contained classroom make sense? If ever?

I don’t know if you remember my post about “Down syndrome Angels,” – I wrote it a long time ago, but in it, I was surprised to meet a guy with Down syndrome who knew how to use my iPhone better than I did. And I’m no slouch with the iPhone.

Moxie’s growing up to be the same as that guy.

She’s 6 and she knows how to get into the settings on iPads and configure the WiFi.

This is a problem for us because as we live off the grid and receive internet through satellite, we have a very limited data supply and can’t stream. What we usually do now is download a few episodes of Sofia the First from Netflix (you can download some episodes now from Netflix – did you know that?!) before 8am, when our data doesn’t count. But sometimes Moxie wants to watch something else, and will work out the passwords for the Kindle or an iPad, and then head over to Settings and get things going – and then use up our data supply for the month, streaming!

Anyway.

She tried this Fishing Game recently at a friend’s house and loved it. I bought it for her, she found it in the closet, opened it while all the rest of us were busy watching Star Trek. She wanted to play with it, and the fish heads were not opening or closing, like she remembered them doing when she played at her friend’s house, so what did she do?

The post about when my daughter with Down syndrome connected this charger to her fishing game

Right.

She brought it over to the charging station and tried to connect it with a cable.

In other words, she did the most sensible thing that a kid in this day and age, used to iPads and Kindles as they are, would do.

Never, ever, EVER underestimate your kid with Down syndrome.

Always presume competence.

Micah apologizes, but he couldn’t make a new video last week as he’s preoccupied getting his science stuff done for the upcoming fair.

He said he’ll make a new one for you next week – either another Harry Potty review (- he’s on a roll with Harry Potter), or a video about his science project! Do you have a preference?

In the meantime, here’s an older video of him interviewing Moxie 🙂

An Interview With Moxie

image is of an orange text box that reads "Kids Corner: Micah Interviews Moxie!", and a YouTube screenshot of moxie's face, and her black and white striped shirt.Drop Micah a line in the comments – he’ll appreciate hearing from you. 

The tooth fairy!

The tooth fairy hasn’t ever visited Moxie before.

Oh, Moxie’s been prepped with Silverlicious & The Tooth Fairy (link included because it’s one of her favorites and I’ve read it about 50 million times to her, so if you want a good book for a little pink-loving girl, this might it), and her big brother with his tooth-losing experiences.

She’s also even lost teeth before (I think one at school? She also did lose one that had another tooth growing behind it), but Mama didn’t have her spoons in her pocket, so the Tooth Fairy stayed in Fairy Land.

Not this time! We were ready, set, raring to GO, and the Tooth Fairy was, too!

Moxie and the Tooth Fairy

Here's Moxie, talking about her experience with the Tooth Fairy!

Captions added using the easy-to-follow tutorial on the National Center on Disability and Access to Education. #NoMoreCraptions

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I don’t know about you, but I remember a bunch of weird crap from when I was a kid. It’s so random – like, those 25 lb bags of carrots that my mom used to buy for us to snack on, and how I ate so many that I could see in the dark something fierce.

I have no idea what my kids are going to remember from this lushly weird childhood that we are giving them. I sure hope it’s going to be good stuff.

Like… I hope they remember how they enjoyed saying, “hi!” to each and every person as we waited to see the doctor – and how the faces of those that they greeted lit up in surprise and delight by their cheerful friendliness.

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I hope they remember how much FUN they made each and every playground visit. How they ruled those small spaces and absolutely wrung out every bit of joy they could.

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I hope they remember stopping to look at flowers with me. I hope they think of me when I’m old, and think of flowers.

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Like I think of them and think of sunshine and bright light.

I hope their memories with one another blend together in a long stream of togetherness and solidify like colorful jello.

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In the midst of all this, I hope they know I tried.

Most of the time, I feel like I’m herding, yelling, nourishing, dressing, praising, admonishing them. It’s like this endless –‘ing. I feel like “no” comes to my lips faster than any “yes” and that bothers me a lot.

I don’t want to be that kind of mother.

But I also don’t want my kids eating crap all day long while being tethered to some device.

“no”, “no”, “NO!”

Meriah Nichols Effort-17

I honestly try. I try to rise above my “no’s”, I try to get things going and keep them moving in a happy way. I don’t know if this will be the one thing that they will just happen to remember, you know? Like how I remember the bag of carrots from my own childhood.

Meriah Nichols Effort-5 Meriah Nichols Effort-21 Meriah Nichols Effort-18 Meriah Nichols Effort-16 Meriah Nichols Effort-15 Meriah Nichols Effort-14Solo parenting kicks my ass and I don’t know how single mothers do it.

At least I have Mikey around SOME of the time; at least I have him full time for 5 months of the year.

Meriah Nichols Effort-9 Meriah Nichols Effort-8 Meriah Nichols Effort-6 Meriah Nichols Effort-7But it’s lonely. And it’s hard.

Then somehow we slip into these grooves – like, where the kids just seem to understand me (and I, them) so well – we are on this higher level of intuitiveness. We just seem to gel and I don’t have to actually say much anymore.

Meriah Nichols Effort-13 Meriah Nichols Effort-12 Meriah Nichols Effort-11And then… oh, it’s so sweet.

Like they are sponges dipped in water, soaking it up, soaking it up. And when I need it, they just pour it right back.

Meriah Nichols Effort-3

6 years ago I went to the hospital for an ultrasound. I had recently suffered a second trimester miscarriage and needed to know that the Rainbow Baby that I was carrying was alive.

She was.

But with fluid separating her skin from her body – a condition called “diffuse fetal hydrops” and with heart holes, the doctor told me that she had a “zero percent” chance of being born alive.

Let’s hold that a moment: zero percent.

He said she had a zero percent chance. He said that I should have an amniocentesis, not for her as she had no chance of surviving, but to know what was going on so that we would be prepared for a similar situation should it happen with a future pregnancy.

Gulp. Zero percent.

So, I did. I went back in the hospital with my husband by my side, and had the amnio, which ultimately revealed the presence of an extra chromosome. Down syndrome.

By the time she was born, her diffuse fetal hydrops had “miraculously” resolved itself, as had her heart holes.

Moxie was born with no health issues whatsoever.

Tell me why now.

Tell me why it’s okay for the doctor to give a sentence like “zero percent”

Tell me why he can get away with this, when if I had believed him and followed through on his recommendation to terminate her life, I would have ended the life of a perfectly healthy child – not that there is anything wrong with a child being born unhealthy. It’s simply that by his own reasoning – health – he was completely, utterly and profoundly wrong.

Tell me why doctors can say “zero” percent and not be held accountable.

Tell me how many other babies are aborted based on a doctor saying “zero percent.”

Tell me why.

Tell me why a doctor – or any person for that matter – can say things to new mothers of a child with Down syndrome.

Tell me why it’s ever okay to spin out baloney, whip up suppositions and slap “Down syndrome” on it. We’ll believe it because we are all know so little and are scared.

Tell me why so many of us are scared of Down syndrome.

child walking through trees with sunlight on her, back to camera

Tell me why.

Tell me why for every little thing that my daughter does, I still feel a strange urge to talk about it, as if her life in and of itself isn’t something to be celebrated. It needs to be explained, justified.

child walking on grass, back to camera

Tell me why.

Tell me why I see this incredible spirit bursting from her, her light, her energy, her glee – and even while I marvel in who she is, I think things like, “if only I had known this when I was pregnant”

child about to slide down a mound on a piece of cardboard two children laughing on the ground

Tell me why people will jump to the conclusion that she is “high functioning” because somehow so much beauty and moxie are not justifiable in someone who isn’t.

child sitting at the base of the mound on her knees, looking down

Tell me why we care so much about “functioning”

child striding through meadow

Tell me what that means anyway

two children hugging each other

Tell me if it’s important in living a life that is meant to be lived

child walking through grass, back to camera

Because I can tell you this:

“function” as a verb means ‘ to work or operate in a proper or particular way’ and as a noun, it means ‘an activity or purpose natural to or intended for a person or thing.’

child walking in meadow with back to camera

Moxie operates in a particular way – which may not be proper. But there is no doubt that her movement in the world is with purpose natural to and intended for her person.

She is exactly who she should be.

child on large mountain

Moxie is 5 today.

Everything that I want to say about her sounds wrongly quantifiable or as if I am justifying who she is, what she is about. I want to say how bright she makes our family, how her energy and light indisputably make our world a more enjoyable place to be. I want to say how smart she is, how creative, ballsy and curious. I want to say that I thank God every.single.day for this child, this child that I would have aborted if I had listened to what the doctors had said.

blurry photo of child looking at the camera

And so even today, as I celebrate the day she came into this world. I want to know why, I want someone to tell me why doctors can say “zero” percent and not be held accountable. I want to know why we, as a culture, are so quick to jump on and eradicate what we suppose will be imperfect when it was so very perfect all along.

child looking down with light all around her

Happy birthday, Moxie.

Moxie is an exceptionally visual child.

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She has a natural propensity and talent for the visual arts – drawing, painting and photography.

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So we have been taking photo walks together – she uses our old iPhone (in the lifeproof case) and plays with some of the photo apps (- mostly Hipstamatic). Here are some of her shots:

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– she caught Daddy!!!!!

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photo by Micah

The Best School Ever said that it’s okay that Moxie isn’t potty trained, they want her (and more stuff like that that has me looking at my toes because I’m always worried I’ll start crying over their total awesomeness). But even with them saying so, I know it’s a good thing to get her on the bandwagon now. I’ve been feeling guilty on account of how MUCH she wanted to do it before and how LITTLE I did, and so… we didn’t. But I’m ready now!

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I am potty training BOTH Moxie and MacQuinn: Moxie’s 4 years old and her typically developing little brother MacQuinn, is almost 2. I decided to just work with them both at the same time – I mean, why not?! Their level of interest was about the same and if I’m doing one, may as well do both, right?

This is a work in progress: we are not done

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I have been doing this for about 10 days now, but we are far from done. This is going to take some time, it seems. This post is more of a beginning of the process as it has led me.

Prep for Potty Training

I prepared by googling “Down syndrome + Potty Training” – useful links are at the end of this post – and also googled plan ole’ “potty training techniques”.

I ended up liking Julie Fellom’s Diaper Free Toddlers Program the best, wherein you let your child run around naked from the waist down – and make the potty the centre of your existence for those three days.

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We got busy.

I took the clothes off of their lower parts and set the timer on my iphone to every half hour.

Then every half hour after the timer buzzed, we sang “Potty Time” (- from Signing Time) and sat down in turns, Mac and Moxie.

Both children would go potty in their toilet but to date neither poops. They both poop outside – squat, go and then come over to tell me about it. Since they both have predictably-timed bowel movements, I think I need to follow them around at that time and place them on the potty when they start to squat.

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Cloth diapers

I have cloth diapers that can be pulled up and used like underwear but with a little more absorbency. (I use Charlie Banana that we bought 50% off from Target -does the job). I use these now around the house,  but I use regular diapers for when we go out/to bed.

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I also use the cloth diapers when we hike around the property since it will keep their privates protected. Hill and tree climbing, you know.

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So far…

The kids have been half naked A LOT. Mac-Q will go on an almost laughably Pavlov-like basis – he hears the ringer go off and BAM! I just have to hope the potty is nearby.

Moxie will go (it seems) when she feels like it. She’s far less conditioned than he is.

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meriah nichols aug (1 of 3)-2If I drop the ball and forget the timer on the iPhone, I live to regret it.

But overall, I try to keep perspective and laugh and remember that it’s all a work in progress and it’ll happen.

Maybe slower than I want, but it will.

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Links for Potty Training Your Child (with Down syndrome):

Toilet Training Children with Down syndrome (NDSSS)

Toilet Training Children with Down syndrome (article by Kennedy)

Potty Training in Three Days (- Baby Center)

Diaper Free Toddlers Program (- Livestrong, because I couldn’t find a link to the actual program)

Naked Potty Training (- site)

Down syndrome Potty Training Facebook Group

 

Programs that are GOLD!

Potty Time – from Signing Time – includes songs and lots of inspiration for the kiddos. They love it!

Daniel Tiger’s Neighborhood – Potty episode – it is on youtube, amazon instant video and mayyyybe on netflix?

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PS

I’d seriously LOVE to hear your potty training stories or tips!

*****

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She is as naked as the day she was born, running through the small meadow, the tall grass swaying in the wind around her. Her hair catches the evening light and a halo is born.

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She is a small girl, clearly loving the feel of her body, her skin, her world – she twirls in circles, at first slowly and then picks up speed with the wind moving around her and she laughs out loud, the peels of her joy ringing strong. Dizzy at last, she collapses in a small heap, the grass swallows her for a second, but only a second. She pops up, running again, arms stretched out wide, open to receive the universe, eager to experience everything she can.

In this moment, there is only golden.

On this hill upon which we live, there is only her and our understanding of her, there are only moments in which we see this fierce beauty grow and blossom.

This is a moment, a golden moment, a moment to hold tight in my heart and treasure for as long as my life may be.

This is the essence of what being a parent is to me – to watch my child gulp down joy and be herself in a space that is hers.

To catch a glimpse of a rainbow growing, pure, strong and bright.

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I marvel at her, all that she is, all that she seems like she is growing to be.

She is not who I thought she might be – what did I think she might be? – certainly not someone as fierce, so in control of what she wants. I didn’t imagine that I’d ever have a daughter who would always choose to jump, climb, dance and slide. Always. Whenever she can.

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…at the end of day when I need something good to hold in my heart, to make me smile and think all is right in the world… I think of Moxie, our precious butterfly in the meadow.

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*****

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Somehow, somewhere along the line, I stopped disciplining Moxie the same as I discipline Micah, or rather even, the same as I disciplined Micah when he was Moxie’s age.

And I don’t know what happened exactly to change that.

I suspect that her  inexhaustible appetite for adventure and mischief  had something to do with it – she simply wore me down and I was too tired to muster the energy to do much else but sigh.

I suspect that her relentless adorability, the fact that her eyes take up about half of her face, her precious pout and infectious giggle had something else to do with it.

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But I also think Down syndrome had a part in this.

Not disciplining Moxie because she has Down syndrome

I know Moxie is clever and yet I’ve caught myself wondering if she understands what exactly is going on, if disciplining her is going to work.

My Mom called me on it – she has been here at the training center with us, watching the kidlets the entire time that I am in training with my hearing service dog. On break one day, I was helping out, Moxie did something she wasn’t supposed to and I just started cleaning, maybe after saying, “noooooooooooooooooooooooo Moxieeeeeeeeeeeeeee!”

My Mom asked me why I wasn’t doing anything about it, that she saw that expression in Moxie’s eyes of, “oh YAY! got away!” At first I denied that I was letting her get away with it, but thought about it all for about two whole minutes and knew that my Mom had hit the nail on its head: I was totally letting Moxie get away with it. 

No way in high hell would I have let Micah dump a cup of milk on the floor and not have a time out AND clean up his mess. No way would I let ANY kid do that; why on earth was I letting Moxie out of a discipline?

Huh. Oh, hi there, Down syndrome. 

I’ve revved it all up about 50 million notches and Moxie’s getting immediate time outs for the things that she knows very well that she is not to do. She dumped a cup of milk in the kitchen last night and I said, “no!”(- firmly, clearly, without the drawing out of the “noooooooooooooo”) then placed her in a 3 minute time out. When the time out was over, I went to her, looked at her in the eye while crouching down in front of her and said, “no dumping milk, Moxie. No. Say you are sorry.” – she signed “sorry” “now clean up this mess, Moxie” – I gave her a towel and she got up and cleaned the whole mess up.

Every little bit of milk.

://the end

meriah nichols_-2

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The first word out of Moxie in the morning is usually, “oooooo-RA!”; the last word from her is usually the same. Out of the 10 or so words that Moxie speaks, half are related to Dora the Explorer.

Moxie has it bad, really, reeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeaaallly bad. And yet we don’t tune it down a notch; in fact, we bumped up her access to the shows, bought her a Dora doll, backpack and Boots. And yet Dora is second only to Caillou in annoyance-levels for us – hearing the questions Dora asks on repeat is like listening to a bad, broken record that mated with nails on chalkboard.

This is why I think Dora the Explorer is worth it:

  1. Dora is interactive: Moxie cannot sit down and watch Dora – she jumps up and participates. She answers Dora when she is asked a question, she hand-stops Swiper from swiping, she cheers them on and “sings” along.meriah nichols_dora-the-explorer
  2. Dora is repetitive: yeah, sure, it drives ME nuts and I think I’m going to tear my hair out if I hear those directions drawn out ONE. MORE. TIME, but this is perfect for Moxie. Lots of repetition helps her get it and helps her be confident and in charge. She knows what’s coming next.meriah nichols_dora-the-explorer
  3. The Spanish – I thought it was a crock but then I heard Moxie saying “- asssssH” and realized she was saying “gracias” – holy cow!
  4. Dora is self-sufficient: she brings what she needs and she finds what she doesn’t have. I like Moxie having a role model that uses her head.meriah nichols_dora-the-explorer
  5. Dora is a practical problem-solver: Dora’s like the Spanish-speaking Nancy Drew for little kids – she has the inexhaustable backpack, she uses maps, she solves problems using logic. She approaches everything in a calm, level-headed way, and finds a way through obstacles. Sometimes the way through just happens to involve going through a volcano.
  6. meriah nichols_dora-the-explorerDora celebrates accomplishments: that “we did it” song and dance?! It’s actually pretty great – a recap of the adventure, celebrating what they did that was hard for them. We use that with other things at home now – when Moxie clears her plate, puts on her clothes by herself, makes her bed, “we did it, we did it, we did it, YAY! Moxie cleared her plate and put her dish away, YAY!” – she loves it.
  7. Moxie’s Dora and Boots dolls: They provide Moxie with an opportunity to role play. Which she does. She puts the Dora doll to bed, she “talks” to the doll, brushes her hair (- she also throws her out the window and out of the loft but that’s a different story).meriah nichols_dora-the-explorer
  8. Her clothes: this is more for the original Dora – but I really liked that Dora was always wearing something simple and non-frilly. Just shorts and a t-shirt. Sensible shoes. She wasn’t trying to pander to anyone except the adventures she wanted to have and be prepared for.
  9. Her family: her family plays a small role in the series altogether, but her mom is pretty empowering – an archaeologist! Even though her parents let her wander around alone in a forest with a monkey, they seem to be solid and caring with wholesome values.meriah nichols_dora-the-explorer

…and, a bonus reason!

10. Dora is great bait for US: we use Dora shamelessly to get Moxie to come back, to turn around, to eat, to clean up – “Dora eats!”, “want to watch Dora?”, “Hey Moxie! DORRRRAAAAA!” – it’s gold.

017at this moment four years ago, I was in labor, on the ball, on my hands and knees, walking, hanging on to the door frame

at this moment four years ago, I was still hoping that the amniocentesis would be wrong. She had had diffuse fetal hydrops (- in which all of her skin was lifted off her body and filled with fluid) and she had had heart holes, all of which had miraculously healed. I was hoping (against hope) that she would be the 1% (or was it the .1%?) that was wrong, hoping that she’d pull a miracle again and be born without Down syndrome.

at this moment four years ago, I was not longing to meet her.

at this moment four years ago, I was very scared. I didn’t know what she would look like, had no mental image for what she would be like, scared that I might not love her or want her.

at this moment four years ago I had been in labor for 8 hours… I had 13 hours to go.

at this moment four years ago, the pain and pressure of childbirth was triggering my brain and knocking me out – surely I’m one of the rare few that had to be slapped to stay awake while engaged in the act of childbirth?

at this moment four years ago, I didn’t know that placenta would be left in me after birth and would fester for a month before paralyzing me and changing our lives completely.

at this moment four years ago, I was like a bird in its egg, with a new world waiting for me on the other side of breaking free. I didn’t know that I was birthing my own moxie as well as my daughter Moxie, that accepting her disability would lead to the acceptance of my own, and that the pain of the Placenta Incident,and walking on fire would resurface my soles and re-brand my heart.

at this moment four years ago, I didn’t know the future.

at this moment four years ago, I was terrified of what it would be.

***

moxie
moxie

I want this post to be about Moxie and about what a glorious person she is, how fun she is, smart and sparkly and oh-so-pretty.

I want this to be about all of that and yet, Moxie’s birth feels to me to be something more than a celebration of the day that she came.

Because when Moxie was born, I welcomed into this world both a slippery 8 lb peach and my own courage.

After she was born and after the Placenta Incident, my life shifted into focus.

She was born. I was re-born. 

Many parents say that their children teach them so much, particularly their children with a disability. I think what the parents actually mean by that is that the parents opened up their own hearts in response to their children and their own hearts taught them the way.

Their own hearts taught them. But it was the child coming that enabled their hearts to open to accept this new space and understanding of courage and of prejudice, helped them to look at the world through a focused lens.

I am no different.

She came. My heart opened. My heart taught me. And I am full of gratitude to her for coming, so happy to have this precious Rainbow.

moxie nichols

 Happy birthday, sweet Moxie

***

PS:

The book which I have been working on is almost done – it should be available tomorrow. Stay tuned!

The foundation that we are starting, the Foundation for Living with a little Moxie, will also be starting very soon – details coming.

xoxo meriah

This blog now seems to have an audience that is made up of travelers, people with disabilities and parents of kids with special needs/disabilities. This makes sense to me, because, after all, living life in a unique way is something that all three of these groups have in common, right?

Travel

We travel to experience the world, for the thrill of the new. We travel to stretch ourselves, learn, have fun, see new things, eat. We travel to change landscapes, push ideologies, see, taste, experience, be.

 Disability

When we have a disability, we venture forth into the world in a unique way, from different vantage points off the mainstream. Our senses, limbs, organs or thinking are wired up in a way that allows us to live life from a place that not everyone can experience. Living with a disability has much in common with traveling: they are both avenues of experiencing the new, a different way of doing something.

Parents of a Child with a Disability

A parent of child with a disability – or “special needs” as it’s becoming popular to say – is forced to venture forth into this unknown, this different way of doing things by virtue of the fact that their child is on this road. Like it or not, their child is on this path and if they want to help their child or allow their child to be all they can be, they need to learn to travel too.

We’re all on this road together. Some of us chose it. Some of us didn’t. Sometimes it’s framed in more sexy ways than others – “beaches in Baja” sounds way cooler than “brain injury” might, but you know what? In the end, you are sitting there and a butterfly passes you and you swear it winked. Which is to say: Your perspective on this world is going to shift dramatically with either travel or disability and that’s just a fact.

But even for the people that wanted change – the travelers among us – even for them, things can get hard. Culture shock hits, you get to this point in which you want to fling the new food at the wall or scream that you don’t give a shit about cross cultural understanding, or peace, love and ecosystems.

You just want the electricity to WORK, you just want the water to RUN and you want frickin’ wifi ACCESS, is that so much to ask?! Or people to quit pointing at you, quit mocking you, quit treating you like a goddamn walking dollar bill.

So what’s it like then, for the person with a disability? The travelers who travel the world in their body, who experience life in a way that is unique but which they often didn’t choose? It can get hard too – culture, only it’s your OWN culture here – slams you up and kicks you in the face, tells you that you can’t participate, you don’t belong, you can’t work, you are good for nothing but some happy photo of a meme that will get passed around Facebook, you have a “good attitude”.

You just want to WORK, you just want the opportunity to RUN, you want some frickin’ ACCESS, is that so much to ask?! Or people to quit pointing at you, quit mocking you, quit treating you like you are going to cost them a goddam dollar bill.

It ends up being very, very similar, you see.

red dawn oregon california (11 of 14) red dawn oregon california (7 of 7)

Far more similar than most people think.

I want people to understand this similarity because I think it will help in understanding how many of us with a disability do not see our disabilities as something bad. Having a disability is a way of experiencing the world, it is my way of traveling, and it’s something that I usually enjoy.

What I do not enjoy, however, is when the world is inaccessible; when the disability equivalent to a broken ATM happens. When I can’t join in a telephone conference call and there are no chat options. When I can’t hear in a classroom and so I have to memorize the textbook and hope it covered everything the lecturer said.

But it’s not my deafness that bothers me. It’s narrow path that the world is currently walking along, one which is simply not necessary, because it’s not hard to make a path wider.

red dawn oregon california (5 of 7)

One of the things I love about road travel is how conducive it is to reflection.

I’ve been reflecting on moxie.

moxie

I’m going to be honest here: I’ve wanted to put this post out forever. But I keep feeling like I’m too small fry of a blog, too much of a dork, I’m not cool enough, I’m lacking the hot-sauce and juju necessary for a post like what I’m writing and the challenge that’s in it.

I’m scared I’m going to be left like the kid sitting all alone at the cafeteria.

But I’m going to stick my neck out – I’m going to wear my heart on my sleeve and I’m going to go through with this. Bear with me, please. It’s kind of a long post.

*******

We gave Moxie her name because we felt she had earned it.

First she was said to have a “0%” chance of survival, then it was said that she would be born with extreme health issues. We had been encouraged to abort her – and in all honesty, I had strongly considered it.

I chose to have the moxie to keep my daughter, and that means that I chose courage. I chose to have the courage to face one of my greatest fears: having a child with a disability.

This fear stemmed from growing up with disabilities, knowing exactly how it feels to be shunned for being different and how much it hurts when you understand that there will always be those that will not want to talk to you because they are fundamentally scared of the difference that you represent.

And I was molested growing up. This is common for people with disabilities – knowing this, and knowing that my daughter would have an intellectual disability, which would make her an even better candidate for being sexually abused than I – was heartbreaking for me and was the piece that pulled me closest to terminating her.

 But this post isn’t about my decision to keep my daughter Moxie.

This post is about finding courage, finding [the noun] moxie.

****

We all have something scares the shit out of us, something that stops us from going where we want. It’s a million things or it’s one thing or it’s any combination of the two. But there is a release that comes with the choice to turn around and grab that thing that we fear by its shoulders and stare it right in the eye.

My decision to keep Moxie was really my grabbing my fear of discrimination, my insecurities regarding my disabilities, my pain and sorrow over what happened to me as a child, looking them all in the eye, and telling them that I was going to lay them to rest. The little monsters.

My decision to keep Moxie wasn’t about religion or God or blessings or rising above whatever. It wasn’t about doing the right thing or being good. I am pro-choice and abortion is legal and it would have been much easier to simply abort her.

But this is the thing: if I had aborted her, I would never have come to terms with my fears. I would never have been freed. I would still be shackled to the life that I was living. By keeping Moxie and by facing my fears, I not only gained the most beautiful, intelligent, artistic little girl I could ever hope for, I gained freedom.

True freedom, freedom of my spirit.

Freedom to finally be myself. Freedom to follow my own path. Freedom from endless, stifling conformity.

 This is the heart of what this blog is about:

a little moxie – it’s about living a life with moxie, choosing to do what may not be the easiest thing, but will be the thing that will set you free.

It’s about choosing to live with courage, choosing to face fears. Choosing to be who you truly want to be, do what you truly want to do, and to be free from a conforming culture.

Everything that we are doing now: slow traveling the Pan American Highway, being a full-time family, learning Spanish, immersing ourselves in different cultures and ways of living, teaching our kids by ourselves, striving for our larger goal of creating an Inn that will work by and for disability – all of this every.single.part – of this came with the decision to keep Moxie.

Everything started with that first step of having the courage to have moxie, to have Moxie.

live with moxie

 Choosing moxie is ongoing.

It’s not as huge nor as dramatic as the piece that started the process – choosing not to abort our daughter – but it is ongoing. Choosing to have courage when things are not easy is a daily choice. Choosing verve instead of insecurity is another daily choice. All of those good/hard things like choosing lesser versions of anger, fear, jealousy, hate, all that.

 Choosing moxie is ongoing.

Choosing moxie is also not always easy. It’s like this endless back and forth dance: one step forward, one step back. Two step forward, three back then three forward. Little by little, little by little, doing the small things, making the tiny choices that end up being massively life changing, little by little moving forward, bit by bit.

It’s really hard for me sometimes.

I know that it seems like I’ve made so much headway – we’re on the road! Yay! – and I think it’s true, I have. But I also know that I have a long way to go still. I struggle to grow moxie almost every day.

 Moxie Stories

I don’t know if you want to share your ‘moxie’ stories – your ‘life with moxie’, your ‘growing moxie’ stories – they things that you do that are hard for you but which you feel move you forward?

I would love to share because it is so fricking hard for me sometimes. I’d love to know I’m not alone but most of all, I’d love us to encourage and support each other in what is hard.

I’m not talking only about the big, huge ‘moxie’ stories – although those are always welcome – it’s the small ones too. Like, one example is that I really want to swim more and yet I hate cold water. The water here can be cold and I usually just wade out, stand there forever and then turn back because I don’t want to be cold.

What I’ve been doing recently is thinking of my beloved late Great Aunt Ruby and how she’d dive into the cold water with glee, and I ask her spirit now to help me get my ass in gear and then I also think of my kids and how I want them to grow up thinking their mom is really fearless, the kind of lady my Great Aunt Ruby was. So I dive in.

You’re probably rolling your eyes right now, cold water, whatever – but it’s a big deal for me!

Anyway, my idea for this is that we can share the stories about things we do that are helping us to grow our moxie. It can be a full post to guest post here on this blog, or just a space to talk about what we are doing. Stuff we are struggling with. Disability-related or travel-related or just plain ole’ life/parenting related?

Like growing moxie often is, we can just make this small – it’s mostly all about the small steps, the little things. Like diving into cold water, right?

Will you join me at my table? Can we talk together about this stuff?

The benefit of this being the internet also is that we can talk about these things anonymously.

I’ve had people privately email me about the steps they are taking to overcome prejudice towards disability, or about how they are trying to overcome depression, or things like that. Big things. You can talk about those too, and you don’t need to use your real name.

What do you say?

The Challenge:

Pick one thing. Anything – just one, that you want to work on, that scares you or that you find difficult. One thing that is a step.

Talk about it here, in the comments – you can make up a name to keep yourself anonymous. Make a commitment to check back in a week.

We’ll hold ourselves accountable to each other, help with the gold stars or whatever that keeps the flame burning.

Mine: I’m going to commit to talking to someone in Spanish every day, rather than hiding because it’s hard to hear them, or because Mikey speaks Spanish really well.

I’m also going to commit to 5 minutes of meditation every morning. I’d like to say 30 minutes but I need to start small.

How about you?

Will you join me? Do something that will help grow your own moxie?

****

Share your story of living with a little moxie, of striving for moxie

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We’ll be back soon with the rest of the La Paz Mini Series, harking back to our first trip there and continuing through to 2014. But while I edit the older photos, here’s this, a photo essay. Probably my favorite little string of photos I’ve ever taken. Circa 2012, in the Hotel California in La Paz.

I hope you like them too.

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with a little moxie stairway to heaven with a little moxie stairway to heaven with a little moxie stairway to heaven with a little moxie stairway to heaven with a little moxie stairway to heaven with a little moxie stairway to heaven with a little moxie stairway to heaven****

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I came upon Moxie the other day as she was sitting by herself. The ‘Big, Little’ book was open on her lap, her legs outstretched. She was signing the pictures, signing “tree” then signing ‘flower”, turning the page (with a flourish and slam) and signing on.

I thought my heart was going to bust out of my chest with the explosion of pride that I felt in her. It’s similar to the feeling that I get as I set a blank sheet of paper in front of her along with some art supplies and watch her just tear in. Or the feeling that I get as she walks down the beach: she knows her own mind so well, she is clear about what she wants and the path she desires. Her “yes”’s and “no”s are firm.

 I am so proud of her.

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Far from challenging me to enjoy a slower pace in life as many people talk of with their children with Down syndrome, Moxie pushes me to run as fast as I can. She is quick.

In response to my post on how I appreciate her speedI have been asked, What if she were slow?” – That is to say, what if she didn’t move as swiftly as she does, what if her “yes”’s and “no”’s were not firm, if she didn’t know her mind as well as she does? What if she embodied all that I have not professed to value?

It has been asked if I would still  appreciate and adore Moxie if she were none of these things.

 

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Well.

Moxie has Down syndrome. She has an extra chromosome, she has an intellectual disability.

There are so many cards that are stacked against her, I don’t even know where to begin. The biggest one though, the most glaring one to me is this idea that we have as a culture that there is something wrong with her, that she’s broken or something.

“People with disabilities are broken”

There is this idea that she needs to be molded into some kind of mainstream form. That she needs to do as all do, that instead of looking to her to see what she offer and trying to move with her flow, we staunch her flow and divert her stream.

We will never truly learn what anyone with Down syndrome – or any disability, or plain ole’ human being when it comes to that – have to offer if we push people into molds. If we don’t let them be who they are, if we don’t encourage every aspect of who they are to flourish so that flowers that we never even knew existed would have the wherewithal to emerge, sprout and bloom.

And that’s part of the key here to me – ‘flowers that we never even knew existed‘ – because we know very little about Down syndrome in particular and intellectual disabilities in general. We have been so busy for so long in not listening.

 

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I want to listen. And I want to encourage her to flourish in all the ways that I know, and I want us to provide a space in which all the ways that we are not aware of will have the positive soil in which to emerge.

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If Moxie was not quick, if she was not so sure of herself, there would be something else.

Three years into raising this child and I’m sure at this point that that something else would shine so brightly that I’d forget about how much I admire whatever it is that I laud now. I’d be singing about that something else.

It’s not that I’m oh-such-a-holier-than-thou-pollyanna.

It’s simply that she is my daughter.

And I love her.

I’ll always see the bright in her.

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Not that she makes it hard.

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