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This is an anecdotal piece about Moxie, a 7 year old with Down syndrome in 1st grade, and our journey this past academic year in school changes and IEP’s.

7 year old Moxie started school in Blue Lake, California this academic year.

It was a huge shift for her, going from the Mattole School on the Lost Coast with 98 students, k-12. Her class there had 12 students with a combined 3 grades, and she had known her classmates, teacher and aid for years. She was comfortable.

Everyone knew her and believed in her capabilities.

Blue Lake was a much bigger school, with over 100 students from kindergarten through 6th grade. Each class for each grade had over 20 students, and they had a classroom that was specifically for students with disabilities.

Moxie started off in general education at Blue Lake. Her IEP from Mattole was used (which called for 100% inclusion). She was, however, swiftly pulled from her general education class and put into the “special” class. The larger portion of each day was being spent with the segregated class and something like 20% being with the general class.

I was confused when I realized what was going on.

I didn’t want to make waves as I knew we were not going to be attending the school for long, but I also didn’t want my daughter to be placed in a segregated class.

Furthermore, nothing about the rationale made sense to me: she was reading only slightly below grade level, was completing all “regular” 1st grade assignments with only minor modifications.

What exactly was going on?

I called a meeting with her general education teacher which turned into a full-blown IEP meeting. I was armed, chock full of the wisdom of fellow parents from the Down syndrome community in the Facebook IEP group (oops, I was going to link the group here but I am a member of around 5 IEP groups and don’t remember which I posted in… 🙁 ). I had my binder, my STUFF READ. I was dressed in black, ready for business, yo!

But as soon as I entered the room, the principal said, “Meriah, we were wrong. Moxie belongs in the general education room.”

Talk about taking the wind out of my sails…. So, I just sat down and signed all the documents, and we agreed that Moxie would be in her general education class except for pull-outs for speech therapy and some one-on-one resource work with reading and math.

That worked great. She was doing well and very happy, and then we moved to Hawaii.

I was VERY nervous about this shift, because I’ve only heard negative stuff about schools here and students with disabilities. Added to that, I grew up here! I’m deaf! Of course I remember how kids in my own schools were treated; it’s partly why I never wanted identify as a person with a disability!

I was in big conversations with schools, trying to figure out what school would appreciate my child the most. Where would she be most likely to be accepted? Embraced? Encouraged? It was tough, and honestly, none of them seemed fantastic.

I chose the one that seemed the best overall fit for both Moxie and her siblings. The school – like most all schools here – is huge, with over 600 students. It aims for full inclusion, but does have the segregated classes. It doesn’t have a lot of resources.

I chose her school though, because it has a strong and large Pacific Islander and Hawaiian population. I chose it because it is mellow. I chose it because I like the way the parents hold their children and I like the way that the mothers walk slowly with their kids to school. Their flip-flops shuffle easily and their pace has time.

I thought that the vibe would best embrace Moxie.

2 months in and it’s… interesting.

There have been some great things and some not-so-great things. The not-so-great likely stemming from the school’s unfamiliarity in working with a 7 Year old with Down Syndrome in the 1st Grade. Namely:

Not-so-great is the absolute astonishment with which educators tell me that Moxie is “really pretty smart!” – and the tone that they have that indicates that they think they are telling me something I don’t know.

Not-so-great is also finding work in her folder that is incorrect, yet was not reviewed and re-done. Not just once or twice either.

Not-so-great is the nod that I see her teacher giving her classmate, that indicates that her classmate is helping her, and that Moxie is seen as someone to help; not as a full contributing member who is also capable of helping others. I don’t see the equal there.

Not-so-great is her special resource teacher telling me that they are really just focusing on the social with Moxie; that it’s really not “that important” that she do her homework.

BUT THE GREAT abounds too!

moxie 7 year old with down syndrome in 1st grade writing

Moxie’s speech has shot off – she has become a real chatterbox with millions of words. She’s hilarious, and she’s able to express it! (see the YouTube video at the end of this post for some Moxie-fun!)

She is reading and writing – and improving with both every day.

Her peers absolutely love her and it shows. She is very popular. Walking down the hall with her is what it feels like to be a rockstar, with every person saying, “hi Moxie!”, “hi!” She is welcomed. She is embraced.

She is enthusiastic about school – she loved going in the morning and is often pissed off about coming home. She adores her teacher, the class aids, the intern – everyone.

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Overall, I think it’s good – because the things that are harder to come by, work through or resolve are the things that we find easily with the school, and the things that I think we can fix are the things that need some fixin’.

That’s where I am, as I prepare this weekend for Moxie’s IEP meeting, in which we’ll be taking a look at what we’ve been following from Blue Lake (which followed Mattole), and I am supremely grateful to the Kansas City Down Syndrome Guild for this amazing IEP compilation that I’ve printed and prepared for the meeting.

moxie 7 year old with down syndrome in 1st grade reading

Moxie: A 7 Year Old with Down Syndrome in the 1st Grade

This academic year isn’t over yet – we still have a few months to go, and I know they will be important ones. The IEP that we will be setting next week, after all, will most likely be the one that all future ones will be based off of in some way or another.

I am nervous.

I am scared.

I want to do the best possible thing for my child, and to ensure her success and her place in school, in the world.

Moxie: A 7 Year Old with Down Syndrome in the 1st Grade

For More on Moxie Learning:
Moxie Having Some FUN!

This post contains affiliate links which means YOU get stuff on sale (40-70% off, see the whole post below), and Tea Collection is going to give this site a cut of their profit. (I don’t see how Tea Collection is making much profit from a sale like this, but hey, I’m not complaining)

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!!

They are having their Black Friday sale NOW – $15 dresses and under – I repeat:

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You are still here?!!

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.

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  • originally posted June 18, 2013

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

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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.

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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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.

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

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”

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 with Down syndrome looking down with light all around her

Happy birthday, Moxie.

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A Few Memoirs from Parents of People with Down Syndrome

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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!

meriah nichols aug (1 of 3)

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

meriah nichols aug (3 of 3)

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.

meriah nichols aug (2 of 3)

meriah nichols aug (1 of 1)-8

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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meriah nichols aug (3 of 4)

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.

meriah nichols aug (1 of 1)-4

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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.

meriah nichols aug (1 of 1)-7

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?

meriah nichols aug (1 of 1)-3

PS

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

*****

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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.

meriah nichols_

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

****

 

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.

moxieWe are experiencing things in a really unique way and we are going to move forward and we are going to bust through this with so much life under our belt, you guys! We are moving along this river of our lives with speed, with some fierceness, with moxie!

 

live with moxieAnd that brings me to this, the Living With Moxie piece. A continuation of the conversation started last weekend (was it only last weekend?).

About sharing our stories of living with moxie, about trying or doing the things that are NOT easy but which will allow us to ultimately grow.

About facing our fears. Whatever they are.

And allowing ourselves to be set free. Just like this says:  sometimes what you fear the most to do is the very thing that will set you free…

******************

 Last week, I lied.

Well, not really, but I did, sort of. I told you that I was going to commit to speaking Spanish every day. I know this sounds like a bona-fide goal because speaking any language isn’t ever easy for a deaf person and learning a new language when you are 40 isn’t either. But that was a cop out and I know it, so I admit it.

Choosing that as a goal to commit to was easier than another one that I think is probably more worthy of claiming here: getting published.

I’m not talking about getting published on the friendly, free sites that have welcomed me (and that welcome just about everyone). I’m talking about getting published on big sites that have a professional bent, sites that usually pay, sites that demand that I pull my sentences in and articulate with grace.

I get really nervous about trying to get published. Thoughts along the lines of, ‘why would anyone want to read what I have to say?’ bloom inside my head with ferocious abandon. And it’s not easy figuring any of this out: who to submit to, what email address, what post, what’s worth it, is any of it worth it? Why try, am I crazy, I must be crazy, I have brain injury after all, haha. And then I get distracted – I have 3 kids, I really do have brain injury, I try to get my calendars moving, try to get something written and LO!, some widget is broken on my site and I need to figure that out and the entire publishing thing takes a back burner…. and you know what?

I end up being kind of relieved that it is because it’s easier to not try.

It’s easier to not try because then I never fail.

I never get rejected.

But I’m not going to do that anymore. It may seem like I’m not failing by not trying but it’s really the ultimate failure, isn’t it, never trying at all? Never going to that place of being vulnerable, never stepping into a zone of discomfort because it is well, uncomfortable. It’s not secure.

That reminds me of this quote,

Security is mostly a superstition. It does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than outright exposure. Life is either a daring adventure, or nothing. To keep our faces toward change and behave like free spirits in the presence of fate is strength undefeatable.

– Helen Keller

Chills up my spine.

To keep our faces toward change and behave like free spirits in the presence of fate is strength undefeatable

With that, I’m going to make my goal here, get published.

I’m going to get published and I’m going to pull together a book proposal to boot.

Two things. Two goals that flip my head around and make my heart beat faster and put me in that space of discomfort because they are two things that I care about and would like to succeed in. Two things that rock my boat of safety, of security.

See? I’m scared already just writing that. I’m nervous just putting that out there. I think that’s a sign that it’s the right goal.

How are you guys doing? What’s floating your moxie boat? What are you up to? What are you doing that scares you and pushes you?

 Guest Post

Our first guest post is coming up next on a Story Developing Moxie – if you want to share your story, I’d love it – just email me your story (see below), we’ll put it on up next week.

Seriously, everyone is welcome. So, let’s share.

Use a fake name if that makes it easier. Or none at all. Your email address is for me only, it won’t be published or shared. I’ve added the story-sharing boxes to both the right side bar and to the bottom bar, so you can access it pretty much anywhere on this blog – and I’d love it if you would.

 Oh man, would I ever love it. I want so badly to hear what you guys are doing to push yourselves outside of your comfort zone, what you are doing to live with moxie, what it’s all about for you.

2

[contact-form][contact-field label=’Name (fake one if you want or none at all)’ type=’name’/][contact-field label=’Email’ type=’email’ required=’1’/][contact-field label=’your story%26#x002c; your commitment%26#x002c; your challenge’ type=’textarea’ required=’1’/][/contact-form]

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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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.

DSC_0498

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.

 

IMG_3964

 

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.

Before I had Moxie – when I was searching online for something positive about Down syndrome, something that I could sink into with a sigh of relief, “oh, it’s going to be okay”, I came upon reasons why parents were grateful that they have a child with Down syndrome.

Learning to slow down was often one of those reasons.

The parents would write about how grateful they were to their child with Down syndrome because that child had taught them to slow down, enjoy life at a slower pace and so forth.

I never found comfort in those types of posts.

I’m a fairly quick person. I tend to move, speak, type, work, paint and act with speed (“precision” is a totally different story). I like quick; I admire things done quickly.

So those posts saying how grateful a given parent was to learn to slow down… yeah, well. It didn’t sit well or bring me happiness.

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Now my child with Down syndrome is 3 and a half years old.

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And the thing that mostly comes to my mind is,

Learning to go SLOWER?!!!

IMG_2903

 

WHERE ON EARTH DID THAT COME FROM?!

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Nothing has made me move faster – EVER – in my life than having Moxie.

Moxie moves fast, thinks fast, acts fast. She keeps on my physical toes. Figuring out ways to teach  her to talk, to sign and so forth keeps me constantly on the mental move and oh my God! Chasing after her!

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This isn’t true of all children with Down syndrome. Of course it’s not. Just like not all typically developing children have brown eyes or like watching Mister Rogers. All kids are different! And it boggles me how easy is it for us to lump children that have something that we are not familiar with together – if one child with Down syndrome isn’t quick, we tend to assume ALL children with Down syndrome are not quick! But we would go to great lengths to defend the fact that not all children like watching Mister Rogers.

Children with Down syndrome are simply not given the type of consideration, benefit of the doubt, breadth of thought and room for diversity that typically developing children are.

Down syndrome is not a one-size fits all mold.

Everyone is different.

My child is QUICK. My child has not – emphatically NOT taught me to “slow down” and “enjoy the ride”; she’s taught me to fun faster and better. She’s taught me to watch where I’m going so I don’t fall.

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She’s taught me to embrace elements of fearlessness that I didn’t know I had in me.

She lives with moxie; she’s teaching me to do the same.

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I really appreciate the outpouring of support that came my way after some of the more vitriolic comments from my post regarding stereotypes and Down syndrome. I am grateful for those of you that have been friends with me – virtually or in person – real and true  enough to hang in there and work with me through the semantics of what I was trying to get to.

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I was especially grateful for the voices that were chiming in from the moms of older kids. The post, after all, had a lot to do with that, wondering why we don’t hear as much from those moms. I deeply appreciate their perspective – like from Jean, Gary and Walkersvillemom.

Walkersvillemom was the one that led me to my AHA!! moment, actually getting to the heart of what I was struggling over, when she said,

…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?”

SYNDROME!!

It is a SYNDROME!! We are talking about a SYNDROME! Which is to say, a group of symptoms that consistently occur together or a condition characterized by a set of associated symptoms.

RIGHT!

I was fumbling over words and the thing that came to my mind was “stereotypes” – but that’s not it at all because we are actually talking about a SYNDROME, and a syndrome that we honestly don’t know very much about.

We do not know how exactly Down syndrome is expressed in our children. We don’t know how anything will unfold, we do know that it WILL, because they have an actual syndrome. But we don’t know HOW.

We don’t know the why’s and wherefore’s. We notice that some of our kids cross their ankles a certain way or tend to be __________(fill in the blank), but we do not know any of this for certain: that it will happen or that it is necessarily something that is specifically caused by having an extra copy of the 21st chromosome.

So what I am saying is that as I notice things develop with Moxie, as I notice her changing or certain behaviors that are associated with people with Down syndrome, I want very much to talk about it. I want to talk with others about it, I want to know more.

This really dovetails with Becca’s recent post on research and One21.

Did you read it? Okay, so, in brief, One21 is about setting up a biobank for Down syndrome research. Dr. Costa, (- a powerhouse of research and the father of a young adult with Down syndrome) explains why a biobank is critical:

(warning: the captions are scattered)

At this point, the One21 campaign is trying to spread awareness – you can sign up for more information and to stay in the loop as more develops. I did. This is definitely something I would like to be a part of.

It gets to the core of what I was trying to say: I want to understand my child better. I want to understand the commonalities between people with Down syndrome. I want to understand the “syndrome” part of Down “syndrome”.

Since we know so little, I think research will help us get there.

If you are with this, it’d be wonderful if you can help spread the word. Join One21 and invite others to join as well.

Like their bi-line says, “A community united can achieve great things.”

And we can.

We can achieve great things.

Indeed, isn’t it as Margaret Mead says? “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

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Moxie got her ears cleaned and checked this week. That is, the ENT (- which means the Ear, Nose and Throat) guy strapped her down to this thing called a “Papoose” so she looked like this:

papooseOnly – dare I say? – more adorable. She was comfortable but confused. The ENT was fabulous, really deserves a 5-stars (which he will get when the hospital sounds me that “How Did He Do?” questionnaire). He was with Moxie the whole time, talking to her, calming her. When I suggested he show her the wax, he readily assented and complied. Moxie was fascinated. That much wax! HOLY COW!

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Those among you reading who are squeamish…well, let’s just say that you are probably prettttttttttyyyyyyyyy glad I didn’t take any pictures of that! haha.

So then we trotted on back to the waiting room to play for a while

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Then headed  over to the Audiologist and I was all hopeful-dipped-in-skeptical because let me tell you one thing: I know my audiologists! Ha. I’ve been in and out of those sound proof boxes since I was probably conceived. Okay, I’m exaggerating, but just barely.

Anyway.

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So we went into this Audiologist’s beige sound-proof box (why are they always beige, by the way? can’t they make them in any other colour? ever?) and I was impressed because this guy was all about Moxie. He was talking completely to her, all of his attention was focused, respectful, polite. I really liked the way he talked to her.

She did too. Because she quickly relaxed and played along with what he wanted her to play along with, stacked the ring things and lifted her hand at the tone and all that stuff.IMG_7889

I got a weird feeling mid way through. I realized that Moxie – my daughter with Down syndrome – was responding to sounds that I could not hear AT ALL. I mean, not a squeak. Not a pip. Zilch. Nada.

It was an interesting feeling.

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I can’t say I was proud of her – no, pride wasn’t the feeling. I wasn’t sad because I can’t hear what she did. No. It was more this strangely surreal moment of recognizing this truth: my daughter hears things I never will. Wow.

They say our children are more than we’ll ever be, huh. I just never expected it to happen so soon.

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PS

Moxie’s ears are now as wax-free as they are likely to ever be and her hearing is excellent. Her eye surgery is still scheduled for August 1st. Thanks to everyone for your super awesome vibes & healing energy – and thank you to Auntie Jane – Moxie *loves* her lamb (and Micah is now singing, “Moxie had a little lamb, little lamb, little lamb… Moxie had a little lamb…“)!! xo

 

 

 

I feel the spirit of Ethan so strongly.

I don’t like talking about it because it seems ripe for a trip to FruitLoop Land,  but you know what? I do.

I feel his spirit.

I look at my daughter, Moxie

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Capricious, delightful, strong willed.

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Smart.

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Beautiful.

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Funny.

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With such a devoted, loving relationship with her brothers.

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And I think of Ethan.

He had family too, a sister and a brother who loved him.

A mother he cried out for as he was held down. Dying.

I see my daughter and her extra chromosome and I see the potential for this type of horror to also happen to her.

You say, “no, it’s different” – but really – is it?

Ethan was 3 years old once. The same age that Moxie will be soon. Who was to say then that he would be held down and killed over a movie ticket, some 20 years later in the future?

Who is to say the same thing can’t or won’t happen to my precious daughter, the light of our lives?

Who is to say it won’t happen to your child, the light of your life?

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Please join our international Down syndrome community in a vigil on Thursday, April 11th. We will be honoring the life of Ethan, showing our support to his family. Sharing our love.

And we will form a band on twitter and call attention to #justiceforethan.Please be a part of this. Show us that you too, care and that the independent investigation into the homicide of Robert “Ethan” Saylor needs to happen. Lend your voice to ours so that we may be strong and be heard.

#justiceforethan

Twitter Rally: THURSDAY, April 11th, 9pm EST, 8pm CST, 7pm MST, 6pm PST. Have your Twitter Handle sheet ready along with your TweetSheet (if you need it). When the clock hits your respective timezone, log into Twitter. Start tweeting.

This is the thing: it doesn’t matter how many followers you have. It doesn’t matter at all. What matters is the sheer volume of tweets we can send to the people listed, and the number of times we can raise the hashtag #justiceforethan. If you have a lot of followers, that’s cool – the people who follow you may choose to join – but it’s not necessary, so don’t worry if it’s just you and your best friend. That’s fine.

  • Twitter Handles
  • Timely Tweets (“tweetsheet”)
  • Twitter 101 (in case you need a refresher)
  • and the shortlink for the neutral post on what happened (for media): http://wp.me/P2ZfJC-23c

Vigil: On the evening marking nearly 3 months since Ethan lost his life, join us in remembering his life and in marking in our hearts the injustice done to Ethan. Take a moment to light a candle, eat some pizza and listen to Bob Marley (something Ethan loved doing). Thursday, April 11th.

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We will not be silent

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Contributing to the Ethan Saylor Memorial Fund:

Because Ethan wasn’t eligible for life insurance, his family has had to pay everything out of pocket. The Ethan Saylor Memorial Fund has been created to help out.

Checks can be made out to
Kim Mercier
400 Oak Court, Baltimore, MD 21228 **notation on the check Ethan Saylor Memorial Fund
All donations are welcome : Just go to “Transfer Money” – the email address to enter is:  ethansaylorfund@gmail.com

Thank you!

I think my story in and of itself is a plump one.
Take your pick, but most of the facets are individually pieces that people will write long about – from the early years on the rural sheep farm to the car accident. My parents becoming Baha’i’s, then moving to the Fiji Islands. Growing up white “kaivalangi”, deaf, attending a Chinese Catholic school for years. Moving to Hawai’i, sent to Japan alone at age 15 to go to a Japanese high school. College at 16. Rural Taiwan, then Japanese prep school (in Japan) at 17. Back to college in Hawai’i, graduation and starting off as an elementary school teacher in Macau (- then a Portuguese colony in China) at age 20.
Trust me.
That’s all just the tip of the iceberg.
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I feel the greatest story of my life was the choice to have Moxie.
This choice slammed me up against the grill of my beliefs, expectations, hopes, fears. It pushed me through the door of radical change and demanded that I re-evaluate my life and everything that I was living by and for.

Prejudice, you see, isn’t easy to face.

It’s ugly.
It’s ignorant.
It brings out the parts in us that we wish didn’t have, that we are not proud of, don’t particularly want others to see.
Prejudice is our crown of shame, and when we wear it, consciously or not, we can feel the weight of it.
Before I had Moxie – even with my being deaf, even with my work in disability employment advocacy and counseling – I had a lot of prejudice about Down syndrome, about what it means to have a child with Down syndrome, about the syndrome itself, about intellectual disability.
I’d see parents with their offspring with Down syndrome at parks, in public and I’d pity the parent. I wanted no part of the “special.”
I wasn’t proud of my feelings and I would never have said them aloud. They were simply too ugly, too ignorant and I knew it even then.
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Choosing to have Moxie freed me in a way I’m still trying to fully comprehend.

It released me from the shackles of constantly trying to be like other families, trying to live a typical life (and who was I kidding anyway?! I’ve never had a typical life!). Freed me from matching my clothes in any way other than what was most pleasing to my own self. It told me to wear the bright red lipstick, go camp on the beach in Mexico for a month with my babies, plant tulips because they are pretty and purple carrots because, hey! Purple carrots!
My Great Story – my greatest story so far – was about facing my fear and prejudice and allowing this little girl into my life and heart, and allowing my mind to open to those that are radically different from me.
And now that I have her, I know how uniquely precious she is. I am learning about how her Tribe thinks, acts, ways in which we are all united and ways in which we can savour our differences.
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I know how alike a diva she can be, how we  laugh at the way she might flip out if we so much as touch her plate when she is engaged in eating, or how she imperially insists on independently doing her own everything. We shake our heads ruefully and laugh, “oh man… Princess Moxie!
This is the thing that I can’t get out of my head over Robert “Ethan” Saylor: he was likely the same way as my Moxie. He probably flipped out if someone touched his plate – or his arm – when he was doing something. Perhaps something like sitting in a theatre, watching a movie, enjoying a snack.
My daughter could be that young man. Anyone who thinks, acts or looks different from the mainstream could be that young man. Anyone to whom there is prejudice for could be that young man.
I can’t get this out of my head because unless and until we truly start to root out prejudice from our minds and hearts, this type of event can happen – a young man or woman can be killed over a movie ticket.
Killed over a movie ticket. Or rather, killed over the prejudice that tempered a moment.
 
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More that you can do:

The change.org petition:

https://www.change.org/petitions/justice-for-robert-saylor
Then:

You can call the U.S. Department of Justice- (202) 307-5138

This is important as they have stated that “there are no concrete action steps at this time. It’s a little bit early for us. We’re trying to assess the situation and see how much community tension there is.”

So let’s make some tension, community. Call!

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You can use these form letters to send:
To the U.S. Department of Justice –
AskDOJ@usdoj.gov
or by mail sent to

U.S. Department of Justice
950 Pennsylvania Avenue, NW
Washington, DC 20530-0001
According to a press release from  the State’s Attorney for Frederick county, Robert Ethan Saylor died as a  result of three individuals’ actions on January 12, 2013 in Frederick,  Maryland. His death was and remains classified a HOMICIDE.
Robert Ethan Saylor was a healthy, 26-year-old man, who also had Down syndrome.
However, the above press release also states that Robert Ethan Saylor  was “…compromised by his Down’s syndrome…” and concludes that no  criminal charges are necessary in Mr. Saylor’s death.
I believe  that the above decision speaks to a continuing bias in society to see  Down syndrome as a disease, those with Down syndrome as lesser humans  and not deserving of the same respect warranted to those without Down  syndrome. I strongly believe, and do not stand alone, that it is a  violation of basic human rights to view Mr. Saylor’s death as somehow  due to his genetic makeup when his death has been classified a HOMICIDE.
I’m contacting you today to ask you to launch an independent inquiry  into the death of Mr. Saylor. I am asking you to prove to me that your  department believes in the humanity and equality of everyone, including  those with intellectual and developmental disabilities.
Respectfully,
[your name]

And again, the change.org petition:

https://www.change.org/petitions/justice-for-robert-saylor
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You are acting for Robert “Ethan” Saylor, acting for justice, acting against prejudice.

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 You are helping to make your own story great.

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