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This post is about the politically correct term for disabled and politically correct term for special needs. It’s for everyone out there like my friend who asked me to write this post because she was just confused by all the talk out there about what to call us!

So here we go.

The Trajectory of the Disabled

I’ve been a person with a disability for most of my life, and a member of the Down syndrome community (thanks to my daughter!) for 8 years. In between my life lived with disabilities and being a parent of a child with a disability, I’ve seen an awful lot of upset over words that are directed towards the disability community, however inadvertently. I myself have been one of those that have been upset.

It happens something like this with the Down syndrome community:

Someone famous says something offensive (- usually involving the word, “retard”)

  • The Down syndrome community bellows
  • The famous person or situation or whatever apologizes
  • The Down syndrome  community simmers down.
  • …and repeat

The Greater Disability Community:

With the greater (cross-disability) community, it’s more of a matter of never ending-ness. It’s the constant little pin-pricks of the “handi-capable”, “special needs”, the references to “wheelchair bound”, and the “differently-abled.”

Everyone is pretty sick of it. The Down syndrome community is sick of it, the greater (cross-disability) disability is sick of it, and there we go.

What is the Politically Correct Term for Disabled People?

I know – just like most of you do as well – that there is a certain amount of weariness felt by members outside of our community.

That is, people outside of our community who care about us and our kids, people who want to be our friends and allies, people who want to do and say the right thing.

And the weariness easily switches to wariness.

Like, nervousness about saying something offensive.

When is a word okay? How is a world okay? If the word is okay with YOU, will it be okay with THEM? Is that person over there going to jump on me?

But wait – YOU said it was okay, YOU say that yourself -? Arrrrrghhhh!

I completely get it and I don’t think there are easy answers because I think so much of this depends on individual preference. There are no universal agreed-upon guidelines. That makes it tricky, you know, for allies to the disabled/Down syndrome parent community.

They say “people with disabilities” and you say “disabled.”

But that girl using a wheelchair says “gimp” or “crip”.

You are not a “person with deafness”, you are a “deaf person” but Moxie is not a “Down syndrome child”; she’s a “person with Down syndrome.”

It’s person first language…until it’s identify-first.

That is, it’s person-first language – a person with a disability – until the person sees disability as an identity, then it becomes identify first.

Identify-first is: deaf person, blind person, disabled person.

Then you get the really fun stuff: Archaic Words!

Those are words that have evolved but still carry some of their original meaning.

Moron, idiot, cretin, mongo all fall under that – as well as retard. So, what do you do? Do you say none of the words? What if you want to use the actual meaning of the word in a correct context, like “retard growth”?

What if you forget?

What if you never knew?

What if you SUCK and just MESS UP and someone catches you and you are proved to be a COMPLETELY INSENSITIVE and HURTFUL HUMAN BEING?!!!!!!

Oh, you monster.

YEAH.

No easy answers. I don’t know what to say, really, because I know if I tell you something, someone else will be telling you something different.

And then the person over in that group over there is going to tell you it’s all balderdash anyway

So, what IS the politically correct term for the disabled? “Special Needs”?

No. Don’t call us “special needs.” Our needs are not “special”, they are human. With that in mind, some basic guidelines for politically correct and the disabled:

  1. “Special needs” WAS an educational term, not a disability term. Now, it’s just a term that you should be staying way the hell away from  (see this post)
  2. “Disability” is a particular way of seeing, hearing, feeling, thinking, moving, learning, sensing, being. It’s not negative. It’s a way of experiencing the world.
  3. Nothing about “disability” indicates “ability” (see this post)
  4. Saying ‘disabled’ is fine; ‘person with a disability’ is fine too, but see how the person wants to be referred to as. Roll with their example.
  5. When you don’t know… ASK

Originally published on June 26, 2015

Many years ago, I took care of an old man with Alzheimer’s.

For over six months, I fed him, gave him his showers, dressed him, kept him company, wiped his butt, took him for walks.

Fended his ‘crazy’ spurts – like when he tried to hit me all the way out of the house, then locked me out and was laughing maniacally through the window (oh yes. Ha. Ha. Ha. ).

the old man

I took care of him because in the initial interview, I took to his wife – I really liked her. With dark circles under her eyes, she was completely overwhelmed, struggling to care for him 24/7.

But man…. the love she showed her husband! The tender way she looked at him! He had no idea who she was but still. She didn’t skip a beat. I wanted to help her. So I joined ship.

his wife

That period taught me a lot, you know. I was in such a raw state in my own life and self that I could not bear to be touched.

But this old man could sometimes only be soothed by my holding his hand. I’d have to hold his hand and get to this place of stillness inside myself and let that energy come across…and only then would he quiet whatever agitation might have stirred up.

But somehow in that all, he taught me how to hold hands. He taught me how to open up to other people again from a trusting heart space.

****

I’d watch him for hours as he gazed outside.

He saw things that I didn’t. I wondered what they were.

the old man, looking out the window

I’d wonder if his glasses were magical, that through them he could view other worlds. I’d wonder at the workings of his mind. The path of emotion that he walked upon.

You could say he was suffering, but while I’ll never know for certain, I don’t think it would be true. He looked just fine to me. His mind was almost gone to another place, that is true, but for the most part, he seemed happy and healthy.

The people that really could have been suffering in this were his family. His many children. His bright wife. But to suffer or not was their choice and they chose to not.

They consciously chose to take his Alzheimer’s in stride and learn and grow as a familial unit. Bond ever-tighter.

To request help when they needed it (enter me), but to form a net of pure love and catch this man who meant so much to them.

Alzheimer’s was a tragedy in that it took this man, while alive, from his family.

It was a gift in that it allowed them an opportunity to grow – in spirit, as a family – that they may not have had otherwise. Who knows? But they saw it that way, they took it that way and let me tell you: it had some results.

They were lovely people.

Now, my daughter has an extra chromosome.

A lot of people like to say that she’s afflicted, that she’s suffering from the Down syndrome.

I don’t know if she is. She doesn’t seem like she is.

 But what do I know?

Maybe this is the face of “suffering” and “affliction“?

I like to think that she’s a maverick spirit that wanted to experience the world from a different perspective.

This little girl will never fit into a box; any box. The very nature of Down syndrome means that you don’t know what is going to happen.

I need to love her as she is. In this very moment. With the future as it unfolds, however that may be. I think this is worth learning. And so I thank my lucky stars that this person is in my life.

my little Maverick. In front of the big painting of the Old Man, looking out into his garden through his magic glass and seeing his young self out there

(originally posted on April 9, 2011)

This is the ultimate guide to the best carriers for a baby with Down syndrome!

This post was written with the advice from many, many mamas (and some papas too!), and all carriers in this post came recommended by families who actually used them with their babies with Down syndrome.

There are affiliate links in this post, which means if you buy a carrier using our link, we will get a small percentage of the sale but you pay no more than you would have had you bought the carrier using another link.

Thanks for helping me to help support you!

Babywearing has never been more popular in recent times, and for good reason: it’s a practical way to transport a baby, and it allows the person carrying the baby freedom of movement.

It allows for easy breastfeeding, constant nurturing and comfort. It is inexpensive and sensible. It provides the baby with touch, loving interaction and an opportunity to organize their environment and strengthen their muscles

There are a plethora of carriers for babies out there, and the question of which carrier will be right for whom is always something a new parent faces. This becomes a little more complicated with the presence of Down syndrome, and some of the unique considerations that babies with Down syndrome have. So, let’s talk about those considerations.

Best practices in researching the best carriers for a baby with Down syndrome

Things to Be Aware of With Infants with Down Syndrome

  1. Low Tone (Hypotonia)

Infants with Down syndrome – and indeed, most all individuals with Down syndrome – have low muscle tone (hypotonia), and loose ligaments.

What this means:

In layman’s terms, this means that most babies with Down syndrome will feel floppy when you hold them – their muscles don’t have a great deal of control.

This means that they often need more support to hold themselves upright, and may tend to slump down in a baby carrier.  We need to be sure to choose carriers that supports their upper back as well as their tailbone through the base of their neck.

It also means that we need to be careful as we hold them in a carrier so that their ligaments don’t stretch further. We want to keep the ligaments together. These are the ligaments in the hips (especially) as well as in the neck.

2. Greater risk for respiratory problems

What this means:

Because babies with Down syndrome are at a greater risk for developing respiratory problems, it’s very important to follow safe airway practices in carrying them.

These practices may need to continue beyond the normally recommended three month period.

3. Loose Joints

Infants with Down syndrome have increased joint laxity – loose joints. This means that their joints are more flexible.

What this means:

The normal spread-squat in a child carrier of approximately 90-100 degrees may not be the best for a baby with Down syndrome. Keeping the baby’s legs closer together will help prevent hip dysplasia (- dislocation of the hip joint).

4. Slower Growth

Children with Down syndrome usually grow more slowly than their typically-developing peers.

What this means:

The carrier will be used for longer than it would for a typically-developing child. This means that paying attention to the low tone and loose ligaments is more important than ever – it will really make a difference in the hip development of the child.

The physical pieces are important with our kids, and should definitely be taken into consideration as we discern the best carriers for a baby with Down syndrome.

The short list of options in the table below should be checked by your child’s physical therapist or physician for your child’s unique needs.

But bear in mind that while choosing your child’s carrier might be more involved when your child has Down syndrome, baby-wearing is still usually the best option! Baby-wearing provides your baby with so much that is virtually impossible to gain unless your baby is in close physical contact with you throughout much of the day.

With that in mind, here are popular options for carriers.

Best Carriers for a Baby with Down Syndrome

MailChimp vs. ConvertKit

 PriceEast of Use:
Intuitiveness
SupportDesignMail
Integrations
MailChimpCheap before you have over 2,000 subscribers or want to do more with your list Not so easy to set up email chains or more intricate listsGood support, really nice people. Gorgeous design; fun, popping gifs, easy drag-and-drop form buildersYes: Easy to set up the integrations from sites through plugins
ConvertKitExpensive before you have 2,000 or more subscribers. From then on, it's cheaperIntuitive, easy to set upExcellent support. Lots of patient and friendly hand holdingText only. No drag and drop email builders. Just plain text.Yes: Easy to set up the integrations from sites through plugins
A table comparing the two email services

This table makes it obvious that there are some really great carriers out there for our babies with Down syndrome.

One thing to note in many of these is that the infant insert is a real game-changer. The insert is basically a little stool that you sit your tiny baby on and allows them to nestle in the carrier with their legs closed. This prevents anything negative happening with their joints or hips.

Another great thing to note is that most of these carriers can easily be purchased – and returned – online. It’s also easy to add them to your baby registries.

Good luck! We look forward to meeting your little one!

This post on the best stroller for a child with Down syndrome is NOT sponsored but there are affiliate links in it. I’m not writing this post as an ad; I’m writing it because I really do want newer parents to know this is the best rugged, long-term, high-weight-capacity stroller out there.

The Best Stroller for a Child with a Disability

The best stroller for a child with a disability is obviously going to need to be a fit for the child’s disability. For the purpose of this post, by “disability” I simply mean, “a disability that necessitates using a stroller for a longer period of time than is customary for comparative ages.” That may cover Down syndrome, autism, cerebral palsy and so forth.

My Story:

When I was pregnant with my daughter with Down syndrome, I  went to a park to meet a mom of a child with Down syndrome, and the child herself. They were lovely people.

The child bolted – it was the first time I saw bolting in action – and I admit I thought the mom was over-reacting at the time (little did I know how bolting would later shape my own life…). After the mom had raced and caught up with the child, the child was plunked in a stroller and strapped in. The child was 7 years old.

At the time, I understood plunking the child in the stroller, but I did not understand bolting. I also clearly remember thinking that stroller – a McLaren umbrella type – was too small for the little girl – she looked squished in it.

Fast Forward 7 Years

My own daughter is 7 years old now, and she bolts. She also ‘flops and drops’ occasionally.

I  travel a lot with my kids, and get out, go. There is not a weekend that goes by in which we don’t go someplace, be it the beach, forest, river or just long walks down fun trails.

The Best Stroller for a Child with Down Syndrome

Given that my daughter with Down syndrome bolts, flops n’ drops and is not ready to ride a bike, I knew I needed a stroller with a lot of room to grow into, a high weight capacity, and rugged durability to satisfy both the exigencies of Ds and my own personal ‘get out and go’ needs. The BOB Revolution is the only stroller that I have found to satisfy both needs.

BOB Revolution Pro Duallie Stroller and Disability

We had the BOB Revolution initially with my (typically developing) firstborn. My (then) husband was a bicycle mechanic and the BOB was something that his bike shop sold. We got it at cost.

Now, the fact that bike shops sell the BOB says a lot about the BOB. It’s built like a rugged mountain bike, with the suspension, shock absorbers, etc. You can use bike tires with it, no problem. We used that stroller for SEVEN YEARS – in the end, it died after we were hauling it around Angkor Wat in Cambodia with all 3 kids on it.

I turned to the BOB double, which is called the “duallie”.

The BOB Revolution Pro Duallie Stroller is like a steroid on wheels. My two youngest plopped right in – Moxie, who has Down syndrome, age 8 and Mack, who is typically developing, age 5. The stroller doesn’t blink; their weight is nothing, and I can easily use it for some time.

Other Strollers for a Child with a Disability

Other strollers will work of course. I’m not trying to say that the BOB is the only one out there!

I had a  for a while and really loved it while traveling in urban areas, New York City in particular.

For 2 kids, that thing was awesome (moveable seats! a single streamlined carriage! huge underbelly for storing stuff! folds flat!). But the kids outgrew it pretty quickly – the seats are much smaller and can’t handle as much weight.

Why I Will Only Recommend the BOB Revolution for another Parent of a Child with a Disability:

Strollers are hella expensive these days. A good one is Pricey (yes, with a capital “P”). When you get a stroller, you want to make sure it will last a long time, especially if you have a child with a disability and know you will likely need it longer than you might if your child didn’t have the disability. It’s an investment.

The Best Stroller for a Child with Down SyndromeSince the stroller is really an investment, put it on your shower list or office/church/friend registry so others can help chip in, and make sure the stroller you get will be something that can actually carry your child comfortably past 8 years of age. I have not actually seen any stroller except the BOB Revolution capable of doing that, and I myself only own a duallie now.

 

Some things to note:

  • The single BOB is more sturdy than the double. But that does not mean that the double isn’t sturdy; basically, it means that the single is a tank and the double is a jeep.
  • It costs a lot. You have to buy the snack trays and your own drink holder separately. If you get this when you are about to have your second/third child, you can put the baby in it AND the toddler and they will continue to use the stroller until they are both well past 5 years old. I fooled around with lower-cost options and ended up regretting it. I should have just bought this one (more expensive but far superior) stroller to begin with.
  • It’s wide, but NO WIDER THAN A WHEELCHAIR. So if it’s a hassle getting it in somewhere, you don’t need to apologize; all pathways in the US should be able to accommodate it by the Americans with Disabilities Act (ADA) and if they are not, then they should. No excuses; this is almost 2020, for crying out loud.
  • It folds close down and locks; the hand brake is good; the foot brake is the one I usually use myself.
  • Make sure you get the Flex or Pro because the Jogger’s wheel does not turn.

The Duallie is a tool that you will totally think is worth it’s weight in gold when you encounter bolting issues – or flop and drops – with your child with Down syndrome (great post from Confessions of the Chromosally Enhanced linked here). It will last you for years, and years of hard wear and abuse.

It’s a worthy stroller.

(and believe it or not, this was NOT a sponsored post!!)


Buy the BOB Single Pro or BOB Revolution Pro Duallie (Pro is better because the sunshades are longer and the wheel is not locked so it can really go ANYWHERE)

Bob Revolution Duallie onAmazon

REI sells the BOB too (if you are a member, this is a great option because of the co-op membership cash back)

SaveSave

SaveSave

Sara Weir is the President of the National Down Syndrome Society (NDSS), which is the organization that spearheads and financially benefits from the Buddy Walks ®™ . NDSS claims to be the “leading human rights organization for all individuals with Down syndrome,” and yet in the face of the loss of Medicaid, they have been, for all intents and purposes, silent.

Silent, when the NDSS has promised to be at every table and stand up and fiercely advocate for people with Down syndrome and disabilities.

Sara Weir President of the NDSS

 

Silent, when The NDSS actually have the connections to affect powerful change right here, right now.

A Little Background on Medicaid:

  1. Medicaid is the federal partnership that provides states with money to help pay for healthcare AND programs that help people across the disability spectrum.
  2. A lot of the program funding has something to do with things the Down syndrome community deeply cares about: keeping our kids and their tribe out of institutions. Helping them work. Helping them be productive and integral members of our communities.
  3. If these cuts happen, our kids are likely to be stuck at home, without work supports. Without health care. Without help to reach their goals and dreams.

A Little Background on Sara Weir & NDSS

  1. The NDSS is The National Down Syndrome Society – they raise large amounts of money through their very popular Buddy Walks ®™ across the United States.
  2. That money is supposed to be used to fund the NDSS to help us when we need it.
  3. The NDSS has LOTS of Republican connections – in fact, Sara Weir, the President of NDSS, has a personal membership to the Capitol Hill Club, the exclusive Republican social club, in which she has frequent meetings on behalf of the NDSS.
  4. A strong stance against Medicaid cuts and caps, a strong stance against the new healthcare bill, signed by both Sara Weir and Robert Taishoff (the Chairman of NDSS), leading the public call against these cuts will be powerful.

So far, Sara Weir has not added her own name to any public statement on Medicaid made by the NDSS, nor has Robert Taishoff.

My fellow people with disabilities are placing their bodies literally on the line  against these cuts; parents of people with Down syndrome making videos that are going viral about what these Medicaid cuts are going to do to their families. We have columns and articles being written, we have parents, allies, advocates fighting tooth and nail against these proposed cuts that will be so devastating for people with disabilities in the United States of America.

But we are without direct connections to Mitch McConnell’s office or other power-players that Sara Weir, Rob Taishoff and the NDSS have. And the NDSS are not utilizing those connections or speaking up about it now.

In times of crisis, we look for who is MOST able to help in the fight.

Please. Join me in asking – no, demanding – that Sara Weir and the NDSS step up to take a strong stance against this devastating proposed piece of “healthcare” that will affect us all so drastically.

Join me in demanding that Sara Weir walk her talk about being at the table and “storming” the hill in defense of people with disabilities.

Join me in holding her accountable to do what we are paying her to do: we are paying her to help our kids and community stay safe, healthy and able to participate, through Medicaid and the continued Medicaid funding.

Join me in urging Sara Weir to use her intimate connections with Republicans  to halt this devastating proposed bill.

Her email address is: sweir@ndss.org

UPDATE:

I have posted all correspondence between Sara and myself HERE, along with form letter that she has sent to many blog readers when they write to her about these issues.

NDSS Board Members and emails that I have:

For More:

TrumpCare ToolKit

Information on WHAT TO DO NOW: Medicaid Will Be Gone Forever

One of the more rampant stereotypes about people with Down syndrome is that they are always happy. Don’t ask why that sticks in the face of a screaming child with Down syndrome – even when someone actually sees my child in a rage, they have been known to comment (with a chuckle) about how “those” kids are “always so happy.” Incredulous, I’ve pointed at my daughter, her face turning purple and her tiny mouth pressed hard into a perfect wail of discontent, and the “always happy” commenter just laughs. Like her rage is just a quirky frame for her happiness.

When I saw the title of Kari’s book, “Not Always Happy,” I laughed. I knew right off the bat that I’d like it – even if I was totally judging it by the cover.

It’s a great read. It’s the story of her love for her husband (and their love of Whitman and movies!, and the birth of their family, through the adoption of their son, Thorin. Who has Down syndrome. And who – (drumroll please) is NOT always happy.

What I Liked About "Not Always Happy"

1. It’s entertaining

2. Kari writes in a super-approachable way

3. It’s funny

4. She uses a lot of movie references, and I love movies

5. She tells the no-fun sides of an IEP process in crystal-clear detail

6. It’s informative: I learned a lot about the adoption process through their story

Why You Should Read It

1. It’s a smooth, fun read

2. It stretches you, but not uncomfortably so

3. It will give you a better understanding of what the challenges that the educational system and our culture present with regard to raising a child with Down syndrome

4. It will make you laugh

5. You will also fall in love with their family

Read It!

Kari’s publisher is giving away a copy of this wonderful story to one reader here, anywhere in the world! 

To enter, just leave a comment here, or answer this question: “is your child always happy?!”

Winner picked by random.org in a week.

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

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

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

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

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

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

I love your curiosity, love of adventure and exploring.

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

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

A forest you didn’t want to walk through.

A valley you didn’t run for

A space you didn’t want to run across

A plane you didn’t want to fly –

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

I adore you.

I adore you completely, whole-heartedly.

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

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

You see the wave and you want to ride it.

And then go back for more!

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

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

You three have a bond

Nothing about your relationship is as they said it would be

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

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

You teach them to act out dramas

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

I love you

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

my daughter with Down syndrome

I love your relationship with Daddy too –

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

You know what you like

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

my daughter with Down syndrome

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

Moxie, my love. My precious daughter.

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

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

I have to run to keep up with you.

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

I need to think about the world in new ways.

I am stretched past my comfort zones.

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

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

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

Happy birthday, Moxie!

I love you now and forever.

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

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

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

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

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

I’m not going to lie: it SUCKED.

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

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

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

And now, I think, for special ed classrooms.

***

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

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

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

I want to see what she wants to do.

***

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

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

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

***

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

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

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

_______________________________________________________________

  • originally posted June 18, 2013

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

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Resources for  New Parents of a Child with Down syndrome

Resources for  new parents of a child with Down syndrome are crucial, as I discovered seven years ago while I was expecting my daughter, Moxie.

Having had an amnio, I knew she was coming with Down syndrome. I suppose my background in disability should have made it easier, same goes for my being deaf and having TBI, PTSD… but it didn’t.

I locked myself up everyday in my offices either at work or at home, and spent countless hours scouring the internet in hope of finding information that would point to a life that would not be bad, either for our daughter or for ourselves.

I wanted pictures. I wanted  stories that I could connect with. I wanted groups. I wanted mentors. I wanted friends who understood.

Now you are here, and if you are here because you googled “Down syndrome” or “expecting a child with Down syndrome”, I want you to find what you need.

Here are some links that will hopefully prove to be helpful resources for new parents of a child with Down syndrome.

My free e-book

“4 Years” is a collection of essays from this blog, covering Moxie’s diagnosis, what to say to me (when you hear I have a child with Down syndrome), fear, the choice to suffer, the choice to keep a child, learning to run, speaking, abuse, breastfeeding, “more alike than different”, siblings, learning to have courage and more.

142 pages with lots of photos and artwork by me.

e-book from i-tunes (this is the nicer format but it can only be read using an i-device)

pdf version (can be read anywhere, on any device)

Stories in Book Form:

Expecting the Unexpected: stories from families, broken down by category (free pdf book)

Down syndrome Pregnancy: if parents could say something to themselves when they received the news… (short stories on the website)

Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives: 10th Anniversary Edition
(actual book compilations of stories purchased through Amazon or elsewhere)

The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood

Very Useful Sites:

Down syndrome Pregnancy

Down syndrome Diagnosis Network

Baby Center (- the Down syndrome Pregnancy group and Down syndrome group)

Parent Blogs

Down syndrome Blogs – blogs by sub-category

A Day in the Life with Down syndrome – read about a day lived in a life with Down syndrome. A community space, posts from a wide variety of families and individuals.

Online Groups

Please check out this list that I’ve compiled of Facebook Groups related to Down syndrome. If this is overwhelming (and it is!), please try out BabyCenter (- the Down syndrome Pregnancy group and Down syndrome group). It’s anonymous, very supportive, friendly, and you can slowly move into the Facebook world from there.

Real Life

It’s a good idea to get to know kids and adults with Down syndrome, and connect with community (face to face). If you live in the US, check out your local Down syndrome Association – google it if you need to find out where it is. The Down syndrome Diagnosis Network and International Down Syndrome Coalition also have fantastic live groups and gatherings.

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

You are not alone. Please contact me if I can help in any way.

 


for Pinterest:

Resources for New Parents of a Child with Down syndrome

March 21st is World Down Syndrome Day.

March 21st is World Down Syndrome Day as March (3rd month) and 21st (day) is 3/21 = 3 copies of the 21st chromosome. (clever!)

Since it’s a global celebration of Down syndrome, there is a lot going on. I thought I’d write a quick post on some of my favorite things that are happening:

1. Get Ready: Get the T-Shirt!

The Down syndrome Chromosome Shirt- available here: https://www.zazzle.com/down_syndrome_stuff/products

A lot of the things to do for World Down Syndrome Day are made (even) more fun by wearing The Down Syndrome Chromosome Shirt. This shirt is available on zazzle, it’s customizable, available in kid’s and infant sizes, and it shows everyone exactly what Down syndrome really is: a third copy of the twenty-first chromosome.

Oh and the proceeds go to fund A Day in the Life with Down syndrome, a ripping website that helps share all the mundane glory of our lives that are shared with someone with Down syndrome.

Talk about a win all-around!

For more information on the T-Shirt, click HERE.

World Down Syndrome Day: Random Acts of Kindness2. Random Acts of Kindness on World Down Syndrome Day

  • On March 21st, wear a t-shirt that is Down syndrome-related (see above!)
  • Choose an act of kindness, like bringing an overwhelmed mom a dinner package or giving warm socks and a shoe certificate to a homeless person (for more suggestions, check out the the list on the FB page below)
  • Print out a WDSD postcard (see right) and give it out or place it with your Random Act of Kindness.
  • Take pictures of your random act if possible and post it on your social media pages with the hashtag #WDSD17.

For the postcards to print out and idea lists, click here to go to the Random Acts of Kindness page on Facebook site.

3. The 3*21 Pledge for World Down Syndrome Day

The 3*21 Pledge is to pledge to:

  • Donate just $21.
  • Pledge to be kind and considerate to peeps of all abilities.
  • Ask three friends to do the same.

While the second part of it is a little annoying to me (- why does it have to say “of all abilities”? Can it just be to pledge to try and be a kind and considerate human being?), I LOVE that the $21 goes to college funds for adults with Down syndrome.

I pledged.

Click here to pledge and learn more about this super fantastic endeavor. The videos on the website are fantastic, and it’s also fun following Ruby’s Rainbow on Instagram.

4. Down syndrome Diagnosis Network

The DSDN has one super-fantastic goal: to get their information out to local organizations, local Down syndrome clinics, doctor offices, Local DDD office (or service coordinator), Therapy clinics, local welcome basket programs, etc. Why is this so important? Because they provide (both online and in-real-life) networks and support for families, and help with updating the information that providers use regarding Down syndrome.

DSDN is happy to send you or your local org their materials to distribute to your local OB-GYN, Pediatrician, DDD provider or Therapist’s Office. Go here to request: https://docs.google.com/forms/d/1dtr_mPOXSMEi9p1dNZGQ_-dvGqADkS_ABgU21XEzTXM/viewform?edit_requested=true

You can also download an information sheet here.

5. A Day in the Life of Down syndrome

Yes, I’m coordinating the project, but really. This is a good one. “A Day in the Life with Down syndrome” is an awesome smorgasbord of stories from days in the life of those with Down syndrome. It’s a great way to take a peek at other’s lives, and to celebrate your own, or the person you love who has Down syndrome.

Down syndrome Blogs is folded into the A Day in the Life with Down syndrome site, you can also browse blogs that have a connection with Down syndrome and get to know some other families and voices from the Down syndrome global community.

6. Give

If you feel like giving money, I’d like to personally suggest a few places:

  1. Lettercase

They are the ones who produce the outstanding books on “Understanding a Down syndrome Diagnosis”. They do truly amazing work with outreach to physicians and expectant parents, and have recently released a Spanish-language booklet. Read more about their work here. The link to donate is here.

2. The National Down syndrome Adoption Network

This is totally grassroots and they literally accomplish life-changing feats on the slimmest of budgets. They can use support. The link to learn more about them is here. The link to donate is here.

3. Give to Research

There are few organizations that do great work with researching Down syndrome – there is still SO MUCH we do not know about this syndrome, that would be really helpful to know. The links between Down syndrome and leukemia? Down syndrome and Alzheimers? What about that zero-impulse control piece, or visual learning in individuals with Down syndrome?

Here are some organizations to give to –

Any other ideas? Did I miss anything (and I’m not talking about socks; I left that out on purpose because I think it’s a complete and total waste of resources and I refuse to correlate a foot covering with my daughter’s extra chromosome).

Peace out! Happy World Down Syndrome Day!

_____________________

Pin It6 Things to do for World Down Syndrome Day 2017

 

The Down Syndrome Chromosome T-Shirt is back!

World Down Syndrome Day is coming up on March 21st –  what better way to celebrate this day than to do so wearing the  Down Syndrome Chromosome Shirt?!

“What is the Down Syndrome Chromosome Shirt?” you might very well be asking. If you are, here’s the answer:

The Down Syndrome Chromosome T-Shirt:

The Down Syndrome Chromosome T-Shirt is simply a t-shirt that has the actual third copy of the 21st chromosome on it. It’s what Down syndrome really is – Trisomy 21.

I’m selling it over on Zazzle

The cool thing about making it on Zazzle is that you can customize your shirt.

Customizing Your Shirt on Zazzle

When you first go to the shirt store, you see a bunch of white t-shirts, a mug and a raglan with black sleeves (like this below):

The Down syndrome Chromosome Shirt

Well, the full page looks like this, and I’ve highlighted the areas that allow you to customize your shirt!The Down syndrome Chromosome Shirt- available here: https://www.zazzle.com/down_syndrome_stuff/products

So, instead of the white raglan with black sleeves, you could choose a white raglan with red sleeves, or a blue raglan with white sleeves or this:

The Down syndrome Chromosome Shirt- available here: https://www.zazzle.com/down_syndrome_stuff/products

When you click on the “customize” button, it takes you to this page, where you can add text, change the size of the chromosome design (want it bigger? Smaller? no sweat!). So you could add “Happy World Down Syndrome Day” to it,  “It’s Just a Little Extra” or “Hey! Cheetos!” – it’s your call.

The Down syndrome Chromosome Shirt- available here: https://www.zazzle.com/down_syndrome_stuff/products

The Kid's Shirts

The kids shirts are simple tees, but also customizable AND with a huge color selection.

Like the adult shirts, it seems like there are only white shirts for sale on the main shop page. The Down syndrome Chromosome Shirt- available here: https://www.zazzle.com/down_syndrome_stuff/products

But if you click on the shirt, it opens up to the color selection and customization page:

The Down syndrome Chromosome Shirt- available here: https://www.zazzle.com/down_syndrome_stuff/products

Same goes for the baby onesies (so cute!) and everything else. Don’t forget about the mug.

Here’s your link to head over to Zazzle and order yours! Down Syndrome Chromosome T-Shirt 

Or just click below

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Disclosure: There are some affiliate links below, but these are all products I highly recommend. I won’t put anything on this page that I haven’t verified and/or personally read. Please read my disclosure page for more info.


Down syndrome Book Resources: some parents feel like they can never get enough.

That makes sense, given the fact that Down syndrome is still not fully understood, and that for most of us parents, our child with Down syndrome is our entry into the world of Down syndrome, Development Disability and sometimes Special Needs*(see note below).

Our child is our guide, and wanting to understand more, we seek out all of the books we can get our hands on.

I myself purchased or reviewed all of the books listed below.

The ones that I most highly recommend I have put an * before.

Your local library should offer most of these books, and/or your local Down syndrome Association.

Most are also easily available through Kindle (on Amazon) or Nook (Barnes and Noble). The medical/education books may be available through your child’s school or you can request them to purchase it as a part of your child’s IEP.

Please add your own recommendations in the comments.

Down syndrome Book Resources

Practical/Skills/Training/Medically Oriented

Supporting Positive Behavior in Children and Teens with Down Syndrome

Gross Motor Skills in Children With Down Syndrome: A Guide for Parents and Professionals 

Fine Motor Skills for Children With Down Syndrome: A Guide for Parents And Professionals 

Teaching Children with Down syndrome About Their Bodies, Boundaries and Sexuality

Early Communication Skills for Children with Down Syndrome: A Guide for Parents and Professionals

Babies with Down Syndrome: A New Parents’ Guide

http://downsyndromepregnancy.org/the-pregnancy-book/ – free downloadable book + ripping site with resources

Education

Teaching Math to People with Down syndrome and Other Hands-On Learners

Teaching Reading to Children with Down syndrome: A Guide for Parents and Teachers

 

Collections

The Parent’s Guide to Down syndromeAdvice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood

Reasons to Smile: Celebrating People Living with Down Syndrome

Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives – 10th Anniversary Edition (updated, with more stories) – this is a MUST-read

Gifts 1: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

Gifts 2: How People with Down Syndrome Enrich the World

 

Memoirs/Personal Stories

* Up Syndrome (a memoir by a woman with Down syndrome)

The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery

Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic

The Shape of the Eye: Down Syndrome, Family, and the Stories We Inherit

Life with a Superhero

From Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome

Sun Shine Down

Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny

Road Map to Holland: How I Found My Way Through My Son’s First Two Years With Down Syndrome

Choosing Naia: A Family’s Journey

My Heart Can’t Even Believe It: A Story of Science, Love and Down syndrome

 

Fiction:

The Unfinished Child

 

Read Book Reviews:T21 Writers Alliance

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* Note: “Special needs” and “disability” are commonly used interchangeably. This is incorrect.

A “special need” is an educational term referring to an individual’s unique educational need, as defined through an IEP. A “disability” is a way of seeing, hearing, speaking, thinking, behaving, moving, feeling that is less common than most. A person may have a “special need” and no disability; likewise a person may have a disability and no educational “special need”.

The words are NOT interchangeable, and the word “disability” is not a bad word. Please use it to refer to your child’s Down syndrome, and use “special need” to refer to their unique educational needs, if any.

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

Direct  Amazon Shop for Down syndrome-Related Books :

 

Down syndrome book resources for parents of people with Down syndrome

Behavioral Issues and Down syndrome

Moxie, my daughter who has Down syndrome, has recently had behavioral issues at school.

A bit of background: Moxie goes to The Best School Ever. She has a wonderful, caring teacher and Moxie’s aide is a lovely woman whom Moxie has known and trusted for years now – ever since we first moved to the Lost Coast.

In a nutshell, the situation is as good as it gets: Moxie’s in a fantastic environment for her, she loves her classmates, she has friends, she is learning and really thriving.

So, Moxie up and starts saying, “no”

As in, saying “no” to her teacher and her aide’s requests for her to behave, sit down, etc. Just flat-out “no” and continuing with what she (- Moxie!) wanted to do.

We’ve had IEP meetings of course, and while we’ve covered speech and general assistance in them, we’ve never covered behavior. We also haven’t covered some of the other pieces that I’ve found are pretty common to cover with kids with Down syndrome.

We didn’t have an IEP to turn to with this new behavioral development of Moxie’s, and all of us were kind of stuck: what to do??

First, I turned to my parent tribe

No one ever gets this stuff like someone else who has walked it. Parent-Tribes of kids with Down syndrome rock!!! I’m so grateful for the people who have gone through this already and are ready and willing to share their hard-won wisdom with me.

Educational Strategies for Children with Down Syndrome – this is a closed Facebook group with some 6,000 members. A wonderful group to belong to (and that I have mentioned on my resources page). I checked in with the group about Moxie’s behavioral issues and asked them for advice. Almost immediately, I received numerous comments with very helpful tried and true ideas and advice.

With this in hand, I turned to The Book: Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don’t React Method

Supporting Positive Behavior in Children and Teens with Down Syndrome

This is a “must-own” for the parent of a child with Down syndrome. It covers the fabulous “flop and drop,” bolting, and other common issues experienced in raising people with that extra chromosome.

It’s short, an easy read, and jam-packed with useful tips. This is hands-down the most useful book that I own in helping me raise my child with Down syndrome.

Many of the tried-and-true ideas and advice that came from my parent tribe matched what The Book said, so I summarized it all into a plan and gave it to Moxie’s teacher and her aide.

The plan goes like this:

The problem:

Moxie will refuse to do something as asked. She may become upset and frustrated.

Some solutions:

  1. Create a visual schedule

Create a chart of the class schedule… in pictures. Have an arrow or place holder which moves to each section as the day progresses. Moxie as a visual learner, will have a better sense of what is coming and what to expect.

  1. Create a visual chart for transitions

For each transition area and/or time that Moxie might usually have difficulty in working, give her a visual check – a sticker, etc. Have it clearly outlined that after so many stickers, she will get a prize (for example, place a gold sticker at the end). Rewards that work at home are time with mommy or daddy – such as mommy will watch her favorite show with her, or do art together. What could work at school could perhaps be taking a swing ride with her aide or  having special time with her teacher? She craves the attention and social interaction more than anything.

  1. Use a clock/timer/hourglass/bell

Use a clock/timer/hourglass/bell to signal “changing activities is 5 minutes” “Look, we have 2 more minutes so lets start our clean up now.” etc. She could have a paper clock on her desk to signal “Time for reading” and she can compare the pictures on her paper clock to the wall clock” Lots of kids have trouble with transitions and they simply need more cues to change.

  1. First/Then

Implement the “first/then” system. Which is, “first we sit, THEN we color”, or “first math, THEN recess.” You may need to word it in ways that work for her, just being sure to keep the “first, THEN”. She tends to resist or try to bargain, but then will work it out and make it her own, usually repeating it back like it was her idea.

  1. Positive Praise

Tons of positive praise works better with her than chastisement. She will stop caring if you chastise too much, but she’s eager to work with you with lots of praise and focus on what she’s doing right. So, tons of praise for doing the right thing when that happens, and make a huge deal out of sitting, following directions, completing a task. That can include high fives, a pat on the back, and verbal announcement of how hard she worked.

  1. Breaking Tasks Down and Restructuring

It’s recommended that her educational tasks are interesting and include visuals and manipulatives. Sometimes things need to be broken down into smaller steps with breaks for success.

Moxie may not have the same stamina for focusing on a task as typically-developing peers, especially if it’s a non-preferred activity. So spending a shorter amount of time on the task and then moving on to a few easier related tasks that are more fun. For example in writing, she can provide most verbal information on what to write. The actual writing is more challenging, so Moxie could trace the words and then after finishing a few sentences or a page, she could perhaps move on to letter tracing with a marker, and then some easier tracing sheets.

  1. Respond, but Don’t React

Moxie does some negative things because she enjoys the attention and reaction she receives from you – even if it’s negative. Bolting, refusing to comply could all fall under this. This is because, like many people with Down syndrome, she is highly social and tuned into you – you are often the reward, even if you are only giving her negative attention.

When she does something along those lines, you should:

  • Take away eye contact
  • Keep your facial expressions neutral
  • Speak very little, if at all
  • Keep your tone of voice neutral
  • Keep your emotions under control
  • If removing attention and emotions is not enough, direct Moxie to “take a break”

And you should not:

  • Look right at her
  • Make angry, upset faces
  • Try to explain, using words, why what she did was wrong
  • Speak in a hard or animated way
  • Show strong emotions

When you remove the emotions and attention, it’s not as fun for her and she stops the behavior.

  1. Keep in Mind:

Things that tend to work well with people with Down syndrome:

  • Predictability
  • Structure
  • Visuals

What doesn’t work well:

  • An unpredictable environment/not knowing what to expect next
  • Lack of routine or structure
  • Explanations given with speech alone

It would be good to keep a Behavior Log so that you at school can let us know what is working and not working, and we can do the same. It’s very important to keep our methods consistent.

 

We’re still working this out – Moxie’s teacher and her aide are testing this all out with her, and seeing what’s a fit.

I’m excited to keep the learning and experimenting up, and figure out how best to continue to help this awesome little girl flourish.

Pin-Ready – 

Behavioral Issues and Down syndrome have recently caused some issues with my child with Down syndrome at school. This is what we did

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.

7 years ago I found out that I was carrying a child that was given a “zero chance” of survival on account of her diffuse fetal hydrops. We had an amniocentesis, and found out that she was coming with an extra chromosome, that she had Down syndrome.

Honestly, this is all so ridiculous to me now, it’s hard for me to write this and take it seriously.

The angst I felt! Holy shit. The prayers I prayed, hoping against hope that the amnio would be wrong. The hours that I spent walking and crying. Time spent poring over photos of children with Down syndrome, reading blogs, trying to get a sense of some alternative normal.

The misery. Oh. My. God. The misery! It was so real and yet from where I stand now, it was so stupid.

Maybe it’s not really fair to say that though. I mean, the misery and concern for my child and her health, her well-being, was real. It was very real. The struggle over her home birth was real, and the placenta that was left in me by the midwives after her birth was also real. The paralysis that I got from the infected placenta was real. The changes that I made in my own life and in the life of our family were also very real. I quit my job. I became a stay-at-home mom. I started getting into farming. I became committed to a life lived as authentically as possible. I inspired my husband to want to quit his job and travel down the Pan American Highway in search of a better place for our family. Then we ended up moving here, to the Lost Coast of California, because my brother bought a farm and wanted us on it! I mean, there is so much that changed.

Down syndrome was sort of the catalyst for that change –

Down syndrome came with our daughter Moxie, a part of her physical package.

I can honestly say that Down syndrome changed our lives. But it changed our lives only inasmuch as we let it. We opened ourselves up to change, holding fast to a dream of our daughter’s personal power, with/without the extra chromosome.

Now, I don’t know if that makes sense or just sounds like a bunch of goofy new-agey gibberish to you reading.

It’s like this: we could have gone on with our regular lives in the San Francisco Bay Area. I could have continued to work, my husband, too. We could have put the kids in daycare, and struggled to pay all the bills, living our life on a treadmill. We could have plunked Moxie down for all the therapy that was recommended to her, and I could have swung with the school district when I went in for the IEP. I could have turned into a fighter-mama-“Speechless“-type.

That could have been our life.

That’s not a bad life. I know that many of you reading this are living a version of that life. But for Mikey and I, having grown up as “third culture kids” abroad, we didn’t have strong roots or many friends in the San Francisco Bay Area. It wasn’t worth it to us to go through all that to stay there. We didn’t have enough holding us, and the dream of owning our own place wasn’t in reach there. My stable, great job was probably the strongest thread that was binding us to the area.

That thread was screwed up by getting paralyzed by the placenta that was left in me after Moxie’s birth. That week in the hospital, hemorrhaging blood and with a raging fever really hammered it home that life is fleeting. I had a gut realization that I need to make more of this life than I have, simply because that’s important to me. I need to quit playing it small and safe, because that does no one any good, least of all, me.

So I opened myself up to change.

And I opened myself up to the idea that Moxie has personal power, that she will grow into an awesome person. My job as her mother is to provide her with the right environment, give her freedom and ways of expression.

6 years into parenting a child with Down syndrome

6 years into this parenting a child with Down syndrome and here we are. I am not the fighter-mama-type. I don’t need to be. We are in a highly supportive environment at The Best School Ever. I’m not interested in living in a place in which I have to become the fighter-mama-type in order to have my daughter accepted. Would I move again, if she wasn’t accepted anymore here?

when a flower doesn't grow, you fix the environment in which it grows. Not the flower.Hell, yes.

I’d try and make it work first, of course – our community is so small that it would definitely stand a chance. But I would move if that would make it better for Moxie.

I would rather change her environment than change her.

And I know that my husband Mikey feels the same way as I do.

Even though we would do pretty much anything to ensure Moxie’s rightful place in any given community, Down syndrome itself plays a precious tiny bit of almost nothing in our day-to-day lives. Moxie bolts and she has a difficult time talking. She learns in her own way, space and time. But other than those pieces, Down syndrome has no affect on our lives.

That’s why thinking about how it was 7 years ago feels ridiculous. That’s why it all feels so stupid. Because while Down syndrome changed our lives as far as we allowed it to, it plays such a miniscule part of our lives now.

We have a beautiful daughter who will hopefully one day be proud that she has Down syndrome. And it’s an honor raising this really cool person, helping her learn to navigate her way through this world.

child with Down syndrome holds yellow daffodils and looks up

____________________

for you pinning on Pinterest –

Down syndrome changed our lives. Here's why

 

Down syndrome is not a big deal at all with our family. If you’ve been following this blog at all, you know that already.

Meriah Nichols-9Social stigma or stereotypes and prejudice don’t affect us all that much. Moxie has no health issues. She has difficulty with speaking, but we can all work with it and we don’t have issues communicating with her, nor she with us. She is a beautiful child – smart, funny, creative, personable, friendly.

She is the daughter that I always wanted.

Meriah Nichols-7The only thing that I truly hate about Down syndrome is the bolting – the zero impulse control.

That is, when Moxie wants to go somewhere sometimes, she just takes off. She bolts, runs. She doesn’t think about the consequences, doesn’t seem to hold anything in her head other than her desire to GO.

Meriah Nichols-5It’s terrifying. It messes with my stomach, clenching it into balls of worry, fatigue, fear.

I wrote about this before – after (then-3 year old) Moxie figured out how to unlock the door and slip out to the big street, when strangers found her and figured out where she lived and brought her back. The post is linked here.

I think that while in some ways it’s better because Moxie will reason now, if I catch and call out to her, she will stop or pause at some point. But it’s still so bad that honestly, I don’t want to go out sometimes. It’s just not worth the headache and worry and the running after her and calling and the terror.

I don’t think anyone other than another parent of a child who bolts understands this. 

Sometimes when we are around other people, I can see the quizzical look in their eye as I run after Moxie or yell for her, like, they think I’m over reacting or don’t understand why she doesn’t stop. She doesn’t react or behave like typically developing kids do with this – not even remotely.

This is the one thing that I would change about the components in her extra chromosome if I could. This is the one thing about Down syndrome that I absolutely hate.

It makes me not want to take the kids out. Makes me anxious, tense. It changes so many pieces and details about our life – from the fact that I can’t simply hang out with other adults and trust that she’s going to be like the other kids and stay in the play yard – I know damn well that she can take off and start running across a road where cars drive too fast, or she can run down to any number of areas where she could easily be hurt. She’ll lock herself in bathrooms, open other people’s car doors, play in their car.

YOU NAME IT; she can do it. Or has done it already.

Meriah Nichols-6This isn’t a post with answers. There are devices and systems that I wrote about already (linked here). Some of these will be useful for you reading – especially with younger kids – but they aren’t all that helpful now for us. GPS tracking? Nah. The dogs are better at that out here, and it’s useless when the danger is her crossing a road where people drive too fast. Gates? Nah. Over 84 acres?! Fences, yes, when Mikey can make the time to build them, but that’s only for home – what about all the times when we are out? Strollers? Yes, for sure, but when we are shopping, she can (and has) unbuckled herself from the cart, climbed out and run away. That fast, that fast, you have no idea how fast she is.

So this isn’t a post with answers. It’s just a post about, damn, this is hard. I wish it wasn’t hard. I want this to not be so hard. I want us all to understand Down syndrome better, to know where this is coming from, why it happens with our kids, and I want us to find real solutions for the bolting.

I want to be able to uncurl my stomach from its tenseness and know that my precious girl will be safe.

Meriah Nichols-2

 

 

Moxie, my love. It seems that some kids aren’t letting Down syndrome define them. It seems that some kids aren’t getting the memo that they have Down syndrome.

Seems like some parents are tickled that their child with Down syndrome is acting more like a typically developing child than not. That is, when their child is growing, learning, speaking, moving and acting as a typically developing child would at the same points in time. They don’t want their child to be “defined” by Down syndrome.

Moxie, I want you to get the memo that you have Down syndrome. And I want you to be defined by Down syndrome.

You know why?

Because Down syndrome gives you something that only one in seven hundred people have: your extra chromosome.

The way that your extra chromosome expresses itself is a part of what makes you, you.

It’s more than the physical pieces – your lovely eyes, crinkly ears, petite size – it’s the way your brain works. It’s a part of how you receive and process information. It’s the way you see and interact with your world.

Down syndrome is like the feet upon which you stand – it’s a part of you. It can carry you forward, it can move you in new directions if you allow it.

It’s like me and my deafness and my own mental pieces.

I am deaf and will always be. I also have TBI, PTSD and was diagnosed with bi-polar disorder. The total package of these bits are also things that I stand upon that propel me forward. They move me in new directions as I lean in and appreciate what they give me.

They give me a lot: a sensitivity to the world. The wherewithal to see language in movement. Creativity and energy burst out of my seams. I appreciate color, light and beauty so much that a new shade combination found in nature can literally make my day.

They give me keen empathy and sharp intuition, based both upon my ability to hear what is not said and my ability to pick up on emotions.

The thing about my disabilities, my love – and the same with yours – is that they are not well understood and they carry stigma with them. The positive sides of our disabilities are not well known. We are thought to be broken people, needing of fixing – you, with supplements and therapy; me with hearing aids and medication.

But I don’t think we are broken.

I think we are whole and are exactly as we should be.

I am proud of my non verbal strength – my ability to understand what is not said. I like the creative flares in my mind and I appreciate being able to step back and be still and feel solutions come to me. I am grateful that I can feel what others feel. Despite the world being inaccessible to me at times, despite discrimination and prejudice I have faced, I like being deaf. I like my disabilities.

I want you to like having Down syndrome.

I want you grow up knowing the beautiful aspects of the pieces of you that come with your syndrome. I want you to grow up saying with pride,

My Down syndrome defines me

I want you to be defined by Down syndrome as I am defined by my deafness, as Temple Grandin is by being autistic, as Kathy Martinez is by being blind, as Neil Jacobson is by having Cerebral Palsy, as Judy Heumann is with Post-Polio.

I want you to be defined by your disability as all of us who have learned our disabilities are an integral part of ourselves are. I want you to see Down syndrome as a fundamental part of your identity, and to claim it as the powerful piece that is a part of your human experience.

We are not who we are “despite” our disabilities; we are who we are because of them.

You and I, my beautiful child, we both move through the world on the framework of our disability.

Our disabilities speak nothing of our capability – the word “disability” has nothing to do with our ability, right? It never did. It’s only a word that, for want of a better one that everyone can agree on, collectively embraces all of us who speak, move, see, hear, think, feel, learn, grow and live in ways that are directly related to a part of our body that is different from mainstream.

We are not broken. We do not need fixing. We are whole and precisely as we should be.

Moxie, my love: You have Down syndrome.

The world may not always be accessible for you. You have already faced discrimination and prejudice and you are likely to face more.

So let Down syndrome define you

Let Down syndrome define you: move forward and be who you are because of who you are.

Be who you are because disability is a fundamental part of you – and embracing your disability will give you the strength to not only navigate an inaccessible world, but to help create a world that accepts us all.

A new short film just came out for World Down syndrome Day.

“How Do You See Me”

Some people wildly loved it! Some wildly hated it!

Some people hate this short because they think it promotes disability erasure. That is, that the film is trying to get people with disabilities see themselves as without a disability.

I don’t agree with that perspective. I liked “How Do You See Me.”

My take on it was that it had nothing to do with the woman with Down syndrome wanting to be “normal” or not accepting herself, but rather that she loves who she is. The mirror of image (with the person without Down syndrome) to me is simply a creative way of asking the viewer to examine their prejudice and conceptions about people with Down syndrome.

To me, this is about questioning our stereotypes, not about denying disability identity.

BUT, HAVING SAID THAT, there are so many people whose opinions I respect who did not see this short in the same way as I did  AT ALL. Even my Beloved didn’t – he watched it and immediately thought it was promoting disability erasure.

I think if the overall response to it is so divided, it’s not a win. I think something much more clear-cut would be better – like someone suggested, having the camera showing the narrator from the back, so you can’t see her face until the end, so that it always only shows the woman with Down syndrome.

But the one thing that “How Do You See Me” got right was that it certainly stimulated a lot of thoughtful discussion about disability identity, disability erasure, inspiration porn, and what would constitute a great acceptance piece. I am just wondering about the thoughts on individuals with Down syndrome.

Where is the voice of the actress with Down syndrome in all of this? How does she feel about it? What about other adults with Ds? I’m sure that there is likely to be as much of a mix of opinions within the adult Down syndrome community as there is in within the adult deaf community – or the cross/disability community – but it always rubs me wrong (in a sad and feeling-helpless way) that when something like this emerges and there is a lot of discussion on it, we don’t hear from the voices that matter the most on it: the voices of individuals with Down syndrome.

 

Some other posts on this piece:

Girl With a Cane

Crippled Scholar

The twitter conversation on it

Parasynchronies

how do you see me

 

 

 

 

The movie, Song of the Sea, found it’s way to our Kindle Fire. Don’t ask me how; I have no idea – it’s not the type of movie that I am more prone to purchasing. It’s not rounded enough for my Pixar-iefied, Disney-bred taste. It’s an Irish movie, I believe, and while it’s for kids, it’s deep. It had dark edges. It has sorrow woven into it’s marrow, it is heavy, with slathers of joyful wonder and the entire story is dipped in magic.

My kids loved it.

That is actually how I found out it was on the Kindle at all. We wondered what they were sitting so still, watching. We hadn’t seen them do that before (we haven’t seen them do that since either). And watch it, they did. Over and over, again and again. It was as if each viewing of it was the first and enthralled them as it had in the initial experience.

This is the story: “When Saoirse and Ben’s mother mysteriously disappears into the ocean, the two children go on an epic journey to find out the truth about her, and in the process, discover mystical secrets about both their mother and Saoirse herself” The truth of Saoirse herself is that she is a selkie, a creature that lives as a seal in the sea, but becomes human on land.

The selkie is a creature of extraordinary powers, and as the story unfolds, Saoirse’s own powers as a selkie awaken, and she develops the ability to save the spirit world from disappearing forever. Silent since birth, however, she needs to find her voice.

The conch shell flute is the key to just that. In playing it, she is able to sing, and when she sings, she saves the magic world.

This was all very beautiful and moving, but it was just a lovely little story to me. A lovely little story that my children loved, and I left it at that until I saw Moxie standing with a shell to her ear.

And it hit me like a ton of bricks, she is trying to find her voice.

Trying to Find Her Voice

October is Down syndrome Awareness Month in the United States. I wrote a piece for the Huffington Post last year called Beyond Awareness. In it, I talk about how I yearn for acceptance for people with Down syndrome, not merely the “awareness” that October touts. I don’t have more to say about that, because there isn’t a part of me that feels differently.

I still want us all to be working outside the box – to match our good feelings with actual action. Because it’s all very well to pass along cute memes, inspiring messages and little videos. It really is. But it’s not enough.

It’s simply not enough when we have a culture that overall, is okay with treating people with developmental disabilities as less-than. As the ever-funny butt of a joke, deserving of sup-par wages, subject to rampant discrimination and abuse – emotional, sexual and physical.

I’ve spent many an hour thinking about this, you know. Wondering how best to accomplish a revolution, wondering how anyone ever changed a culture to affect real change. Fundamental change, the kind of change that starts from the heart and moves out, up to the head and through the nerves, muscles and bone to spill forth into inspired action.

I think it boils down to focus.

That is, those that want to implement the change will focus on the change that they want to see.

They believe in the change, before they can even see it.

And act in the ways that suit their particular gifts best.

Some of us are gifted with the means to hire people with Down syndrome. Others have a gift of reason and can help explain processes to others, push for political change. Others have the gift of creating, and through their art, can help convey the beauty that lies in us all. Others are gifted in bringing people together – or in raising and identifying resources.

We are all gifted with something that can contribute to focused acceptance; of that there is no doubt.

So where do we come in? Where do I come in? Me, Meriah, mother of Moxie, small child-who-thinks-she-is-a-selkie with Down syndrome? My question – no, my challenge – to myself has been in trying to determine what I bring to the table that can help affect change in some way. I mean, I am not loaded with money, I live off the grid in a yurt, for crying out loud, with uncertain internet access and without phone access at all! With an outhouse to boot! Oh, and I’m DEAF! With freakin’ PTSD and brain injury! Sometimes I feel it’s almost comical, and those small voices in me have their way with me from time to time. “Who do you think you are? What can you do?”

And this is where I step back and remember that my playing small serves no-one, least of all my daughter. Like everyone else, I can focus on what I bring to the table, on what my gifts might be.

Since I love stories and I believe in the power of the story to affect social change, I am focusing on that. I pulled together a site called “A Day in the Life with Down syndrome“. This site is not a month-long deal; this is an ongoing project that seeks to capture stories and moments in the lives of people with Down syndrome.

This project joins the “Pro-Information” Movement; that is, the the movement that seeks to give women information about what a life lived with Down syndrome looks like. It tries to battle the eugenics movement against people with Down syndrome through information and conscious choice, as opposed to forcing people to a pro-choice or pro-life side. The “Pro Information” Movement is neutral and stands firmly in the camp of information.

And so, even with my disability posts now being posted on Two Thirds of the Planet and not on this blog, I wanted to share this project and hope that you can join and share in the way that you can.

 

Let us help those with Down syndrome find their voices.

A Day in the Life with Down syndrome

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