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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:

$15 and under!!!!! So – 

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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.

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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.

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

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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)

What feels like a million years ago, I was on the Baby Center Down syndrome Board. I was immersing myself in the questions, the comments, the endless threads. The talk, the chatter, the crying, the heartache. The “brag”s. One signature struck me in particular, “I never knew I wanted a child with Down syndrome until I got one.” I still don’t know who originally came up with that – do you? – but I clearly remember the pang in me that I felt when I first read it.

I never knew I wanted a child with Down syndrome until I got one.

At the time, I wondered over it. Wondered at the love behind it, wondered if I would ever feel the same. Wondered if I would lay claim to those words – not for stringing them first, but rather, lay claim to their meaning. Lay claim not just to my daughter, but to her extra chromosome. Because cognitive disability was hard for me. Very, very hard.

Hard to accept, hard to appreciate, hard to wrap my mind around its presence in my life through my child.

Moxie is three years old now and I can say it with all of my heart, ever fiber that makes me who I am: I never knew I wanted a child with Down syndrome until I got one.

Oh! How we love her.

It’s partly just who she is but it’s also partly the something that the little extra carries with it. Because some of the things that she does and some of the things that we love adore so completely about her are things that we hear from others who are also connected to this tribe.

Like: she can see into my soul.

She doesn’t normally cover me in hugs or kisses; she’s usually pretty hands off. But there are moments when I am crippled with sadness – and out of everyone around, with everyone around – she senses it. She comes over, cups my face in her tiny hands, kisses my cheek with matchless tenderness. My child, my heart.

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***

I was terribly cynical for a long time.

Pregnant with Moxie, I’d read things about how much mothers loved their little ones with Down syndrome and I thought things along the lines of, “that’s great, that’s wonderful, silver linings and all, good for them but I’d rather have a kid without Down syndrome, thanks”. I think in my heart of hearts, I didn’t believe it was possible for someone to truly be accepting of an intellectual disability, or to honestly see something anything desirable about it.

And even now, typing these words, I think of the person I was, I think of old friends of mine and wonder if they are reading this, how they are likely to be thinking I’ve either changed a lot or I’m pulling this out of my ass.

I’ll make it easy for you, my friend, by telling you straight up: I’ve changed.

People might say, ‘oh yeah, you can accept and love Moxie and all because it’s easy with her, she’s “high functioning” or whatever.

Besides the fact that I hate words like “high functioning” or “low functioning” and I hate how we seem to assign merit to people based on how alike mainstream they are, guess what? Moxie isn’t really “high functioning.” I don’t  know what’s what in all the “functioning” stuff but I do know this: she’s over three years old and maaaayyyyyyyyybe says 5 words. Sure, she understands just about everything we say to her, but she doesn’t talk much.

She’s not some “high functioning” child with Down syndrome. She’s just a little girl. Who has Down syndrome. That extra chromosome contributes to who she is – undeniably so. As I get to know her and by extension, it, I grow to love the whole package so deeply, so completely and…words escape me.

I never knew I wanted a child with Down syndrome until I got one.

IMG_7441I got her.

Swift moving child of light

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Exuberance and femininity, personified

IMG_7473She is a child with Down syndrome.

Strong willed, creative, musical. Rhythmic.

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She understands the world in her unique way, one in which I am learning and growing into

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I never knew I wanted a child with Down syndrome until I got one.

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I am infinitely grateful I did.

 

 

 

 

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?

****

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

****

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.

 

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

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!

****

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

____________________

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.

We all know apps can be great with kids… but what if your budget doesn’t allow for the purchase of an ipad itself? Here are some no cost options for getting your child (especially, your child with a disability) an ipad.

***

Local Resources:

Never underestimate the power of local. We ourselves received Moxie’s ipad from a local organization that my friend Mari told us about, the  The Shelby Clark Memorial Fund.

They were absolutely wonderful.

I contacted them off of their website, applied for a grant in honor of Shelby Clark, a beautiful little girl that passed away too soon.

We are deeply grateful to the Clarks for giving Moxie her ipad and try to honor the memory of their child.

Other Local Resources:

Rotary/Kiwani/Lions Club: your local business club is likely to have an outstanding commitment to championing education –  it might be a simple matter of asking if that commitment also covers ipads, which are used to help develop communication and cognition. If they don’t, encourage them to start one – with your child being the first recipient!

Cross Disability Organizations:  United Cerebral Palsy, Easter Seals, etc. They might have a fund to tap into, or they might know of one.

Lending Libraries:  Here in the Bay Area,  the Center for Accessible Technology’s ipad project for people with speech disabilities, lends out ipads for specified periods of time. Check out your local libraries/non profits to see if similar projects are happening that you can tap into.

Non Profits: Speaking of non profits, check in with your  local Center for Independent Living about options. I know the CIL in Berkeley has a lot of resources and knowledge – make sure to talk to the person who works more with funding/grants/technology.

Word Out: Family and friends are traditionally the source for most of our information and contacts. Spread the word that you are looking and that your child would really benefit from an ipad. Ask your people to keep their eyes peeled and ears open.

photo 3

Organizations:

I was going to do a write up on A4CWSN -Apps for Children With Special Needs – include information on their apps, an interview with Gary James, the founder, and of course, information on how to enter to win a free iPad.

It seems, however, that there is a situation with A4CWSN . They are being investigated by the Attorney General of the state of Connecticut. That sucks in and of itself, but the part that really stinks is the founder deletes questions on his facebook page and attacks people that question him or what is going on.

So saying this, there are still people that have received ipads from the organization. I guess this is one of those potential sinkholes that you can navigate at your own risk. All links and information follow – you make your own call.

General website: Apps for Children with Special Needs

About the investigation: Contact information for the man in charge of the AG investigation. Terence Zehnder, Special Investigator, Trade Practices Division, Department of Consumer Protection: terence.zehnder@ct.gov

ph.(860) 713-6130 fax (860) 706-1315

Sites related to the investigation:
http://a4anon.blogspot.com/
http://a4cwsnsurvivor.blogspot.com/

photo 4

Moving On:

I just want to encourage other folks out there that might really want to get an ipad for their child (with or without a disability). Even if you have a low income, it shouldn’t stop you. Spend time googling local resources, organizations. Even unexpected ones, like those mentioned above.

Tell people you are looking, keep all doors open. It’s definitely possible.

There are also a million and two fundraising ideas floating around pinterest – you can even have bake sales to raise the money, a tip jar at work and so forth. It all counts and it all adds up. But that’s probably the subject of another post.

If you know of other resources, please leave them in the comments here so that everyone can read and learn.

photo 2Most of all, I think it’s important to keep a very positive outlook: BELIEVE it can happen, really believe that your child will receive what s/he needs to learn and that it’s simply a matter of finding the organization that is the best fit for your child, knock on doors and let them open.

Good luck.

We all know apps can be great with kids… but what if your budget doesn’t allow for the purchase of an ipad itself? Here are some no cost options for getting your child (especially, your child with a disability) an ipad.

***

Local Resources:

Never underestimate the power of local. We ourselves received Moxie’s ipad from a local organization that my friend Mari told us about, the  The Shelby Clark Memorial Fund.

They were absolutely wonderful.

I contacted them off of their website, applied for a grant in honor of Shelby Clark, a beautiful little girl that passed away too soon.

We are deeply grateful to the Clarks for giving Moxie her ipad and try to honor the memory of their child.

Other Local Resources:

Rotary/Kiwani/Lions Club: your local business club is likely to have an outstanding commitment to championing education –  it might be a simple matter of asking if that commitment also covers ipads, which are used to help develop communication and cognition. If they don’t, encourage them to start one – with your child being the first recipient!

Cross Disability Organizations:  United Cerebral Palsy, Easter Seals, etc. They might have a fund to tap into, or they might know of one.

Lending Libraries:  Here in the Bay Area,  the Center for Accessible Technology’s ipad project for people with speech disabilities, lends out ipads for specified periods of time. Check out your local libraries/non profits to see if similar projects are happening that you can tap into.

Non Profits: Speaking of non profits, check in with your  local Center for Independent Living about options. I know the CIL in Berkeley has a lot of resources and knowledge – make sure to talk to the person who works more with funding/grants/technology.

Word Out: Family and friends are traditionally the source for most of our information and contacts. Spread the word that you are looking and that your child would really benefit from an ipad. Ask your people to keep their eyes peeled and ears open.

photo 3

Organizations:

I was going to do a write up on A4CWSN -Apps for Children With Special Needs – include information on their apps, an interview with Gary James, the founder, and of course, information on how to enter to win a free iPad.

It seems, however, that there is a situation with A4CWSN . They are being investigated by the Attorney General of the state of Connecticut. That sucks in and of itself, but the part that really stinks is the founder deletes questions on his facebook page and attacks people that question him or what is going on.

So saying this, there are still people that have received ipads from the organization. I guess this is one of those potential sinkholes that you can navigate at your own risk. All links and information follow – you make your own call.

General website: Apps for Children with Special Needs

About the investigation: Contact information for the man in charge of the AG investigation. Terence Zehnder, Special Investigator, Trade Practices Division, Department of Consumer Protection: terence.zehnder@ct.gov

ph.(860) 713-6130 fax (860) 706-1315

Sites related to the investigation:
http://a4anon.blogspot.com/
http://a4cwsnsurvivor.blogspot.com/

photo 4

Moving On:

I just want to encourage other folks out there that might really want to get an ipad for their child (with or without a disability). Even if you have a low income, it shouldn’t stop you. Spend time googling local resources, organizations. Even unexpected ones, like those mentioned above.

Tell people you are looking, keep all doors open. It’s definitely possible.

There are also a million and two fundraising ideas floating around pinterest – you can even have bake sales to raise the money, a tip jar at work and so forth. It all counts and it all adds up. But that’s probably the subject of another post.

If you know of other resources, please leave them in the comments here so that everyone can read and learn.

photo 2Most of all, I think it’s important to keep a very positive outlook: BELIEVE it can happen, really believe that your child will receive what s/he needs to learn and that it’s simply a matter of finding the organization that is the best fit for your child, knock on doors and let them open.

Good luck.

Monica and David: the story of a couple with Down syndrome who get married and begin their life together. It was originally aired a couple of years ago but Netflix just picked it up, which means I’m watching it for the first time.

I should note that since the captioning is not consistent, all of my neighbors got to watch it with me!

Yay for my neighbors!

Anyway. It really had me bawling like a small child through much of the first half. I think just watching it brought up so many of my hopes and fears regarding Moxie. That she’ll find love, be happy with someone. Wear a gorgeous wedding dress because I want to dress up my daughter, dammit! Have a wonderful party and celebrate love found. I want these things so much for her, my breath catches in my throat and my eyes well up. Again.

The story of the mothers – both young and whose husbands split – also made me tear up. Both Monica and David’s mothers love their children very, very much and that is abundantly clear.

They are also both, by their own words, over protective.

Now, while I can totally understand the propensity to be over protective, it’s hard for me to see that actually becoming a reality with our own Moxie. I’m just not sure she’d stand for it.

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The girl is more independent than any of us. She leads the way most of the time and we just kind of bumble along, following.

I don’t know how that’s going to play out over the years, of course, but it’s hard for me to see a situation like the one they had, in which Monica and David don’t go anywhere alone; they are constantly with Monica’s parents.

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Moxie isn’t even three and she throws huge, colossal, on the ground fits when we don’t let her ride her trike or do what she wants.

Good Lord.

Seriously.

But I don’t know how much of Monica and David’s willingness to go along with the chaperoning was learned or just came naturally, you know? Were they both every bit as independent as Moxie is, and then their mothers over-protected them out of it?

I don’t know.

The cooking bit also had me kerflummoxed.

Two grown ups, not cooking? How did that happen?

Mikey and I were watching it together at that point and we just looked at each other and shook our heads in incomprehension.

That’s so not going to happen with Moxie.

Even she didn’t want to cook (-she does), it wouldn’t because we are a Cooking Family if we are anything. We watch PBS cooking shows for fun; Micah calls us over if he sees a good Julia Child episode is on. We make yogurt and mayonnaise by hand and pie crust from cereal – and don’t get Mikey started on a discussion on the relative merits of bone marrow!

IMG_9580IMG_9539It WAS, however, a good reminder to make sure we continue to include Moxie in cooking endeavors in the same way we included Micah when he was her age.

Baby girl’s got to learn!

IMG_9514 IMG_9526Even sticking her cloves into an orange is good practice, right?

*****

Back to Monica and David.

I liked the documentary, overall. I thought it hit a nice tone, not overly sentimental and not “inspirational”. There is a lot of love in it, Monica for David, David for Monica, the parents for the couple and so forth – the love really spoke to me. I think things may be different in our respective parenting/disability philosophies, but I still feel a connection and sense of gratitude to both Monica and David’s mothers for raising such fine people.

Tell me: how’d you like it?

 

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I.
The beginning of my pregnancy with Moxie feels jumbled, as I recollect it now, some 3 years later. It’s a blur of happenings, events moving swiftly upon each other like quick waves that peak in a tsunami. The blur may be due to the events themselves or may be to the way my mind works – I have brain injury, sustained from jetting out of the windshield of a car when I was 4 years old. Memories for me often shape themselves in unusual ways.

Like the day that we went to see our daughter for the first time.

I remember being in a black short dress with pirate sleeves that was from H&M, with black flared yoga pants. I liked that dress. I remember wanting to wear cherry red lipstick and not having any. I remember I wore my Earth moonboots and that Mikey didn’t like them. I remember that we passed a moss green Nissan Cube on the way there. I remember the weather was crisp, dry and clear. I think I was about 10 weeks pregnant. I know I was 36 years old (I just did the math). I also know that I was pregnant after just having had a second trimester miscarriage.

We were on our way to the special clinic, the one where they send “higher risk” pregnancies to be examined. Once there, in the dim room with the brightness of the ultrasound machine in front of us, my belly exposed with glistening gel slathered on, we saw the blinking of our baby’s heart, knew she was alive and for that, were happy. But we knew that the long pause and the lack of chatter from the technician signaled a problem. She left, and returned with the very same perinatologist who had told me that my last child had died. My heart sank as I saw him and I blurted out something along the lines of, “but the baby is alive! I know it! I can see the heart beating!”

He nodded. Yes, our baby was alive but there were problems. He showed us the line of her skin and the line of her body: they were clearly separated. She had a condition called diffuse fetal hydrops, in which her skin was completely separated from her body, with fluid lying between the two. She had heart holes. She was unlikely to make it to term. “0%” chance of survival, he gave her.  He suggested that we have an amniocentesis before she died to find out the cause of the hydrops – not necessarily for her as she was clearly beyond saving, he said – but for future pregnancies.

Numb, and with aching hearts, we consented and returned a few weeks later for the test.

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II.
The amniocentesis revealed the presence of an extra chromosome. It also revealed that the baby was a girl. And miraculously – her diffuse fetal hydrops had completely resolved itself.

Despite being strongly encouraged to terminate her life on account of the Down syndrome, we chose to keep her.

Perhaps I should be more honest here: my husband chose to keep her. My husband was adamant about keeping her, saying that we needed to “play with the cards we are given.”

Continuing in this vein of honesty, I am not sure I would have kept her, had I not been with him.

Having grown up deaf, with brain injury and with my auditory processing disorder – not to mention with scars all over my face, I
know what it’s like to grow up with a disability. I know what it’s like to be excluded, mocked, and outcast. I know what it’s like to
literally have stones thrown at you, because you are different, an “other”. I have a chip in my front tooth from a time that I fought
back, but the (much larger) boy was wearing a ring when he punched me in the mouth.

I have been abused. I have been raped. And I am the norm in this: statistics clearly show that up to 90% of people with disabilities
have been sexually abused, a disproportionate number of those being people with intellectual disabilities.

Why then would I consciously choose to bring a daughter into this world, knowing full well that I could be exposing her to what I have been exposed to? Why would I choose to open the doors to the potential for boundless suffering? Keeping her seemed to be an act of pure selfishness.

Selfish, you see, because I did want her.

3

III.
I deeply regretted having the amniocentesis. I regretted knowing that she’d be coming with Down syndrome. My angst over our decision to keep her consumed me, kept me awake for most of my pregnancy, endless insomnia. Night after night I’d relive my own most horrific memories, wondering if I made the right choice, if I had simply conscripted my daughter to a life of misery.

Scared, too of Down syndrome and of intellectual disability, I pored over personal blogs, memoirs, articles – anything and everything to ease my fear of that unknown.

I envied people that had a birth diagnosis because I felt that at least they could hold their baby as they wept or dealt with grief. Me? I had to wrap my arms around my moving belly and walk alone amongst the dark thoughts in my own head.

Walking among all the dark thoughts in my head served its purpose though. I finally realized that my daughter’s life is her own and not mine. Her path is fresh and clear and her disability is not mine. The way the world sees her and the way in which she will move and grow will be different from me. As Gibran says,

Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

The grief that enveloped me for so much of my pregnancy also served a purpose: it completely purged me of anything other than my thorough joy and delight in her existence.

Choosing Moxie: Choosing to keep our daughter with Down syndrome

IV. Moxie Jean

She is now 5 years old. She goes to school, is learning to read. She bosses both her older and little brother around and chases our chickens. She is sparkly, bright, curious, smart. She runs and loves soccer. She is learning to ride a bike.

She has perfect health. Her heart holes and her diffuse fetal hydrops were completely resolved in utero and she was born a healthy, hearty baby, simply with an extra chromosome.

She is beautiful.

I think back to what the doctors told me and the fear that I had and while the fear seems silly to me now in light of the child that Moxie actually is, it was terribly real at that time. The predictions of the doctors regarding who she would be were final, held no space in their tone for error, and yet they were completely wrong. They should be held accountable for their words, words which could easily have ended the life of this precious person.

SaveSave

SaveSave

So I’m sitting here with a sleeping Mac in my lap.

I’m crying over him, big fat tears plopping all over his legs.

I’m trying to figure out why exactly I’m so upset.

The administrator’s parting comment over Micah reading Rumpelstiltskin (the book he brought along to read on his own during the meeting) rings in my ears, “ha! no delay there!

– at the time, in the room, I turned to her with my jaw open and that was right when Mac spat up a few mouthfuls all over me, Moxie was running out and I had to go.

My automatic response anyway is never a good one. It usually involves a lot of cussing and bitch slapping, so it’s probably a good thing I had to run out after Moxie, drenched in spit up.

*****

Let me backtrack so you understand what I am even talking about.

We met with Moxie’s Regional Center caseworker. The Regional Center is the organization that funds the services that Moxie receives that are not covered by insurance. The only service we have really been receiving for the past year has been Speech Therapy (- Moxie is mostly non verbal). The Regional Center only covers therapies, etc, until the child is 3 years old – at which point a given “case” is handed to the local school district and an “Individual Education Plan” – IEP – is drawn up.

Well, Moxie’s going to be 3 in May. Her case is being transferred.

I’m not honestly sure what our situation is going to be, come May. If we will still be here or if we’ll have left already. I’m not sure if I’ll be homeschooling or if preschool seems to be a good option for Moxie – I’m just not sure about a lot right now. So I was going to the meeting more as a way of keeping all options open than as a means toward achieving a pre-desired end.

I didn’t draft up questions about…anything.

I didn’t have my guard up or armour on as I simply assumed were going to have a quick conversation about next steps. Moxie’s Regional Center caseworker was, as I mentioned, present. I like her, and had relaxed in our comfortable relationship.

And so, like some kind of (frazzled) shell-less turtle, I arrived with all 3 kids in tow. Moxie was sleepy, having been woken up from a nap and her spaced-out look that tends to make the features associated with Down syndrome more pronounced was in full force. When we walked in, I apologized for bringing all the kids and stated that Moxie was pretty sleepy. One of the ladies gave her this…knowing  look, this look that just screamed, “yeah sure, your kid has Down syndrome and you are trying to make it seem like she’s just sleepy.”

Boy, did my hackles rise.

From that point on, it was the little things. It was the small looks (please remember: I am deaf. Small looks for me are not what they are for the non-deaf). It was the side glances, the shrugs. As far as what was actually said, well,it was the need for Moxie be tested, assessed and evaluated, to be plied upon with therapy like therapy was water and she was traveling the Sahara, dehydrated. It was their suggestion that Moxie go to a “special needs” classroom as opposed to an inclusive class, their insistence that a Montessori school would “clearly” not be a good choice for her because of well, “you know…the role playing.”

I was then the recipient of the “sure, whatever you want” responses, all the while shrugging and rolling their eyes at me.  I was kind of glad I was feeding Mac while all this was happening because I swear to God, my hands were twitching by the end of the hour.

I was patronized and treated like an ignoramus.  But worse was how they clearly felt about my Moxie.  How dare they treat my daughter like so much a disease. How dare they try and push her into a tiny, isolated box of “special needs.”

How dare they treat her like she is stupid?

She might have an intellectual disability but she is far from stupid. That in and of itself is raging ignorance, to confuse her disability with stupidity and I wanted to blast that through their narrow little minds.

****

It was horrible and I was not prepared. I was completely unprepared.

Mac’s still sleeping here in my lap. Moxie just came in. She picked up my sling in the living room and was trying to put her doll in it to carry it around and… I’m sorry. Tears are filling my eyes again.

photo(7)

She is so bright, so capable, so smart.

But Jesus! Even if she wasn’t.

How dare they.

 

Although I’ve had a disability since I was 4 years old (that we know of anyway), I was mainstreamed at all times. In my family, “disability” was something reserved for people who used wheelchairs. The answer to any disability-related issue I may have had growing up was invariably:

  • try a little harder
  • God only gives you what you can handle
  • suffering is good! “with fire we test the gold!”

Saying I tried to “pass” and fit in among the non-deaf, non-disabled is like saying the Pope is Catholic. Yeah, well, duh. I bent over backwards and twisted myself into loops to try and pass! I happily applied  hairspray into a firm helmet of lacquer to keep my hair from flying back and revealing my dastardly, huge medically-unsexy-looking hearing aids. HEARING AIDS! Who wears the suckers when they are FIFTEEN YEARS OLD?! Who has their perfectly-hearing grandparents cutting out coupons for hearing-ware for them?!

The only people who were lower than me on the totem of uncool were people with developmental disabilities. I wouldn’t come within 10 feet of  someone with a developmental disability. It’s the curse of those of us that desperately want to be “normal” in that sometimes we can be the most cruel. Or sometimes we want so badly to fit in that we shun anyone that might might expose us to be who we actually are: different.

****

After I started working at UC Berkeley and met fierce people within the community who had a disability, I started to realize that my fear of being labeled “deaf” or “disabled” had a lot to do with this perception that I had of “disability” and “deaf” equating helplessness, incapability – and perhaps even stupidity. Uncool, for sure, uncool.

Meeting people that I found inexpressibly hip, savvy, adept – who had a disability – was huge for me. I met tens, hundreds of people at UC Berkeley and in the San Francisco Bay Area that I oozed respect for. Capable, smart, funny people. People who did something with their lives, people who were often good looking, well dressed. Disabled.

Liane Yasumoto’s Superfest pushed me farther by exposing me to people with disabilities high on the artistry level. Producing movies and art that I deeply appreciated.

Sue Schweik’s Disability Studies course, my mentor Sarah Dunham and her book recommendations – the reading that I did – the Oral History Project – all of these pieces swirled for me before laying into a new and complete picture of disability that looked nothing like what I once thought it to be. This new look – the new picture – was full of opportunity. It had pride. Beauty. Humour and grace.

Was not, is not about sorry, sad and tired cliches.

****

But then. I was told my daughter would be coming with Down syndrome – a developmental disability!

My world crumbled, yes, and all the self-acceptance, pride, and love for disability was stripped clean off me, reverting me to my terribly insecure 15 year old self. Every injustice, every hurt, every wrong I’d ever suffered in my life came back and reverberated in my soul, in my marrow for the remaining 6 months of my pregnancy.

I was that kid they hit because she was scar faced and deaf; my daughter would know that pain. I was that girl scorned because she was different; my daughter would know that feeling. I was the girl who hurt so bad she’d get nosebleeds from crying because she didn’t, couldn’t fit in; my daughter would know that feeling.

People talk a lot about ‘right to life’ in the Down syndrome community. It’s not that I don’t believe in a right to life; it’s that I have walked the walk of disability, you see. I know first hand how hard it can be. To choose to keep my daughter, while knowing full well how difficult her life might be was without question the most agonizing decision of my life. Like all parents, I wanted to know that I was doing everything that I could to give my child a life better than what I had, and I wasn’t sure I was doing that by letting her live.

Ultimately, what saved us all was coming to an understanding that her life is hers. It is not mine. As Gibran says:

Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow…

Moxie has a disability; how her life unfolds will be different from mine. Different by virtue of the fact that we are different people, different because I have walked this path and am more aware than my mother could ever have been with me. Different because she’s Moxie – and she has it, too.

***

For the post on my experience with Down syndrome before Moxie came: Down syndrome Angels?! HELL’S Angels!

Full text from Kahlil Gibran’s ‘On Children’

Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

 

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