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9 Great Children’s Books About Down Syndrome

This is a post about great children’s books about Down syndrome.

Children’s Books About Down Syndrome

Stories are a wonderful way to explain Down syndrome to a child,

Good children’s books find ways to convey the complexity – and simplicity – of Down syndrome, and they bring home the humanity of us all. I’ve personally enjoyed reading children’s books about Down syndrome to not only my sons (who do not have Down syndrome) but to my daughter (who does). It’s an easy way for her to understand her extra chromosome as well.

What’s Inside You Is Inside Me, Too: My Chromosomes Make Me Unique

“Every child, every person, every living thing is unique, in big part, due to chromosomes. Children with Down syndrome have an extra chromosome. this book informs people about Down syndrome in a fun illustrative way. In the process, it also explains chromosomes and their role in making every living thing special. A valuable tool for educators, siblings, individuals with Down syndrome, advocates and for those innately curious.”

What's Inside You

My Friend Has Down Syndrome

From the “Let’s Talk About it Series

“The sensitively written Let’s Talk About It Books encourage preschool-age and early-grades children to explore their feelings, deal with problems that trouble them, and understand others who have problems of their own. …Here, in this reassuring story, two children, one with Down syndrome and one without, learn that they are both good at different things and that by helping each other overcome their fears and difficulties they can accomplish a great deal together.”

My Friend Has Down Syndrome

From the “Friends With Disabilities” Series

“My friend Sarah has a disability called Down Syndrome. But that doesn’t matter to us. We tell jokes and laugh, go to ballet class together, and have a lot of fun. I’m glad Sarah is my friend!”

My Friend Has Down Syndrome

We’ll Paint the Octopus Red

“As six-year-old Emma anticipates the birth of her new baby brother or sister, she vividly imagines all of the things they can do together. Emma feels ready to be a big sister! Then when the baby is born, her dad tells her that it’s a boy and he has something called Down syndrome. Finally she asks, “If Isaac has this Down thing, then what can’t he do?”. Her dad thinks about it, then tells her that as long as they are patient with him, and help him when he needs it, there probably isn’t anything Isaac can’t do. In this touching story, Emma helps her father as much as he helps her to realise that Isaac is the baby they dreamed of. The book concludes with a set of commonly asked questions about Down syndrome with answers for children and how it might affect their sibling and family. For ages 3-7.”

We'll Paint the Octopus Red

Down on the Farm

“A beautiful story highlighting a sunny day visit to the farm. The reader is invited into a whimsical tale with animals and children enjoying their adventures. What makes this story unique, however, is that each of the children photographed in the book has Down Syndrome. The storyline is appropriate for all children and clearly shows the abilities of children with an extra chromosome.”

Down on the Farm

You’re All Kinds of Wonderful

“We’re not all the same. Thank goodness we’re not.
Life would be boring, and I mean… a lot.

And so, when we’re born, we’re supplied at the start
with our own bells and whistles to set us apart.

Think of your bells as the things you do best
things tucked away in your own treasure chest.

Part of growing up is discovering―and embracing―what makes us unique. From different abilities to different personalities, we are all wonderfully made with our own bells and whistles.

Once again, New York Times-bestselling author and artist Nancy Tillman takes a universal truth and makes it accessible for readers young and old.”

You're All Kinds of Wonderful

My Friend Isabelle

“(2004 iParenting Media Award Winner) Isabelle and Charlie are friends. They both like to draw, dance, read, and play at the park. They both like to eat Cheerios. They both cry if their feelings are hurt. And, like most friends, they are also different from each other. Isabelle has Down syndrome. Charlie doesn’t. Written by Isabelle’s mother, this charming tale encourages readers to think about what makes a friendship special. MY FRIEND ISABELLE also opens the door for young children to talk about differences and the world around them. It’s a wonderful story to read at bedtime or to share at school. Lively full color illustrations dovetail beautifully with the text to bring the simple story to life.”

My Friend Isabelle

Kids Like Me…Learn ABC’s

“Kids Like Me…Learn ABCs includes appealing photos of children with Down syndrome on a crisp white background, surrounded by colorful borders. Each child holds or interacts with an object that represents a letter of the alphabet. Surrounding images also show that letter in sign language, upper and lower case type, and an illustration of the featured object.

All children will enjoy this book, but children with Down syndrome will delight in seeing other kids just like them, having fun and learning about their ABCs..”

Kids Like Me...Learn ABC's

Kids Like Me… Learn Colors

“Kids Like Me…Learn Colors teaches primary colors, plus orange, green, purple, pink, brown, black, white, silver, gold, gray, and a multi-color rainbow. Every page features a child with Down syndrome wearing a shirt and playing with an object of the same color, photographed against a crisp, white background. Borders contain the word for English and Spanish. After all, it’s never too early to start bilingual education!”

Kids Like Me... Colors

I hope this collection of the great children’s books about Down syndrome has been useful.

Please remember to not let cost deter you from reading what is useful: ask your local library to stock up on these titles if they don’t carry them, make sure your local Down syndrome association or group carries them. Recommend them to your child’s school too!

For more information and to connect with other parents, don’t forget to read my:

super-comprehensive Down Syndrome Resources Guide
list of Facebook Groups Related to Down Syndrome
long list of free stuff for kids with disabilities
best Down syndrome Awareness videos
support Down syndrome owned businesses
….and speaking of which, come and buy a t-shirt from me!

Keep Reading

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Why I’m Glad the Doctor Told Me to Abort My Baby with Down Syndrome

In 2009, I went to the hospital for a 14-week scan of the fetus that I was carrying. The scan showed that she had diffuse fetal hydrops – there was fluid separating all of her skin and her body – and holes in her heart.

She was given a zero percent chance of being born alive.

I was told to come back for an amniocentesis to find out what was causing the diffuse fetal hydrops in particular, and I did. The amniocentesis revealed the presence of an extra chromosome – Down syndrome.

The Doctor Advised Me to Abort My Daughter with Down Syndrome

I was advised by the doctor to abort my daughter with Down syndrome.

To be more clear, after he told us that she was going to come with Down syndrome, he asked us when we would like to schedule the termination. When we said we needed to think about it, he referred us to the perinatal specialist.

We met with the perinatal specialist.

The specialist urged us to abort our child, telling us how poor her quality of life would be, coming with Down syndrome.

I asked for specific information related to this “poor quality of life”, a brochure, a pamphlet on Down syndrome? Something?! “We don’t have that, ” he said.

I asked to meet a family with a child with Down syndrome, or to go to some kind of Down syndrome group, “We don’t do that, ” he said.

But, he said, “you really should think about the burden you will placing on your son by having a Down syndrome child.”

The conversation went on, with me asking for more information, the doctor having nothing in the way of concrete, real information, only endless opinions that pointed to his ableism, prejudice, and ignorance.

I was Leaning Toward Aborting My Daughter with Down Syndrome

I have written before about this, but having grown up with disabilities and facing all the ableism and abuse in my life has not been easy. I was terrified of bringing someone else into the world who would face something similar – but potentially far worse than me.

Intellectual and developmental disabilities are, after all, on the bottom rung of the disability ladder. There are frightening levels of abuse occurring with people with all disabilities, but most of all with intellectual and developmental disabilities.

The Struggle of Choosing: Abortion Because of Down Syndrome?

I had been fighting disability discrimination, ableism and prejudice for most of my life in some form or another. I am deaf, I have TBI and also C-PTSD (the latter which has manifested mostly as I have gotten older, with the layering of PTSD – it looks a lot like bi-polar disorder).

By the time I became pregnant with my daughter, I had reached a good place. I had a good job, I had friends, I was married. I felt as if I was liked and respected for my work and for myself, even with everyone knowing about my disabilities: I had “come out” with disability. I had already walked the hard path and had come to a sweet spot.

Thinking that I would bear a child with Down syndrome – bring someone with an intellectual and developmental disability into this world – made me tired. I felt like I had been carrying a sword all my life and had just put it down, only to realize that I had only been whetting it so far; that the real battles were all ahead of me, not behind me.

In the end, my indecision was my decision

I always want this part of my story to read differently, to say something like how I stood up and cried out loudly, majestically for my daughter’s right to live, that I castigated the doctors and marched on out of offices.

I wish I had been fierce at that moment, not frightened.

But the truth is what I tell best and the truth is that I was completely, totally terrified. I was so fucking scared, I couldn’t even really function: I couldn’t sleep, I couldn’t respond, I couldn’t process. I was in this numb-zone of being blanketed by fear, thinking of everything that could come, that might come, that had come. Round and round in a mindless loop, my own ableism, memories and trauma wrapped around and filled me.

In the end, I was stuck in some middle-ground of not being able to unequivocally, powerfully, compellingly say, “NO!” to the calls from the doctor to abort my baby with Down syndrome. In the end, I just closed up and didn’t respond to anything.

My arms went around my body and held tight, my head tucked into my chest and my legs drew up, cradling my unborn child and I walked through the terrors of my mind for the remainder of my pregnancy. I could not talk about my pain or fear, and only told a handful of people that my child was coming with Down syndrome.

Why I’m Glad the Doctor Told Me to Abort My Baby with Down Syndrome

This sounds like an awful thing to say, but at this point, I am glad that I was told that I should abort my baby with Down syndrome.

If the doctors had not told me to abort my baby, I would never have had to go through that grief process to the depth and the extent that I did.

The grief process for me involved facing my own internalized ableism. That is, facing all of the prejudice regarding disability that I have – because even as a person with disabilities, I have ableism – it was sucked into me through cultures I was raised in, through belief systems, through my own struggles with living in an inaccessible world that didn’t see value in the way my body or brain function.

For me, facing my own ableism involved me examining everything that disability is and stands for, and making the conscious decision to accept disability in my life.

In accepting it, I had to work through everything that I was not just scared of, but actually felt terror toward.

Piece by piece.

I was terrified of my daughter being abused (like I had been). I was terrified of her being outcast, a reject, an unwanted. As I have been.

I was scared of her being dull, without sparkle.

Choosing to have her – even if I was not fierce, loud or proud about it – was fundamentally a choice to face my fears. If the doctor had not encouraged me to abort her, I would never have had to make an active choice about any of it. It would have happened to me, as opposed to my own choice, and therein lies power.

Make no mistake though: I don’t think doctors should be encouraging any mother to abort her child. I am angry that my doctors refused to offer me actual information about Down syndrome, all the while bandying words like, “burden” around. I want laws with teeth that with hold these doctors accountable for their words.

But given that this happened already, I am glad that I had an active part in continuing with my pregnancy. I’m glad that I chose to keep my baby with Down syndrome. I’m glad that my fear did not overwhelm me to the extent that I would abort my baby. I’m glad that I played with the cards that I had been given, because it ended up being the best hand possible for me.

My Daughter Has Down Syndrome

She is a pretty typical with kid with Down syndrome. She has difficulty in talking. Articulating does not come easily for her. She is smart, capable – and this is normal for people with Down syndrome. Intellectual disability, I have learned, should never be confused with stupidity. They are very different things.

She is sporty: she is engaged in gymnastics, aikido. She’s a great swimmer and can ride waves expertly with her body-board.

young girl with down syndrome wearing a gymnastics jumper on a high beam, about to jump, there is an adult woman standing by her side making sure she is safe

girl with down syndrome holding boogie board: she is standing and smiling on the beach with the water behind her

girl with down syndrome in a white martial arts gi sits and waits her turn

My daughter is funny and is fun. She has a great sense of humor.

She oozes creativity, and is endlessly inspired with artistic ideas – like making her own clay figures while watching a show with claymation.

She gets her little brother to do it with her.

two children, one with down syndrome, with clay and iPads, looking up at the camera, smiling — working on her claymation with her little brother

how to get services for your disabled child: photo of a little girl with down syndrome in cross-legged yoga position — she's making fun of me here

Her life would not be more valuable if she wasn’t so athletic, or if she could speak more clearly; it would not have less value if she were not as fun as she is, or as artistic. It would just be different.

My life, after all, is not more valuable because I can speak clearly or because I cannot hear without hearing aids. It’s just different. I don’t need to hear to be of worth, do I? Well, she doesn’t need to be great at body-boarding to have value to the world.

No; our value – all of us, every. single. human. being. is intrinsic in and of ourselves. It is not conditional upon our physical self.

If we suck at running, we’re still valuable. If we do math well, more power to us.

For people with Down syndrome, it’s no different. Lives are lives and they are worth living, in all of their expressions, talents, skills, weaknesses and weirdness.

We’re good the way we are.

image of a girl with down syndrome shaping her hands to form a heart, she is smiling

how to get services for your child with special needs: photo of meriah nichols and her 3 kids: a woman smiling into the camera with three young children, one girl and two boys, all smiling

Down Syndrome Resources:

Lettercase: Getting information about Down syndrome to doctors to give to women who find their baby is coming with Down syndrome
Down Syndrome Pregnancy
Down Syndrome Diagnosis Network
Down Syndrome Groups on Facebook
The Best Books on Down Syndrome
Resources for New Parents of a Child with Down Syndrome

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Sex and Down syndrome!

I think we should be talking more about sexuality and Down syndrome, talking more about sex and Down syndrome. First, I want to talk a little about two nuggets that I feel address this subject most wonderfully.

Yo Tambien

I watched the Spanish movie, “Me Too” (- Yo Tambien). recently (available on Netflix). It’s about a man with Down syndrome who is looking for love and finds it with his coworker. His coworker does not have Down syndrome and this causes complications in their love story.

Within this lovely, thoughtful movie is another story – one of a couple, both with Down syndrome – who are trying to consummate their love for one another. The girl’s mother is treating her as if she’s a child (- she’s not; she’s 24 years old). They end up running away and – well, I think you need to watch it yourself. It’s on Netflix.

This whole movie kicked me in the gut and had me sobbing like a small child. It perfectly expresses what I would imagine it would mean to have Down syndrome and want love – as all people want love.

Life With a Superhero

This book has the worst title but I think it’s my favorite memoir of a parent of a person with Down syndrome. It’s my favorite because, beyond the author’s excellent writing, her son is a sexually active man living with his girlfriend when she leaves us.

This book is not the more-typical story of a parent coming to terms with a Down syndrome diagnosis, it’s not about the first 5 years of Michael’s life as much as it about his entire unfolding. That includes sexuality, masturbation and losing his virginity.

And I like that. I think all parents of a child with Down syndrome should be reading this book. We talk a great deal about wanting inclusion for our kids, about fighting for it. We talk about discrimination, about how we want our children to grow up and BE HAPPY.

Love and sex are a big part of being happy when you reach adulthood. That’s just a fact. We are sexual creatures who were given our parts right along with our feelings for a purpose: to use them.

Our children are going to grow up, they will become adults with Down syndrome. And just as adults with Down syndrome currently are, they will people who are (hopefully) sexual; people who enjoy that aspect of life and find fulfillment therein. People who love – both emotionally and physically.

People with disabilities are sexual too

My feelings on this are complicated. As a person with a disability who “passes” as non-disabled, I despaired of ever finding a partner who would love me.

Not just tolerate me; love me.

I thought it would be easier in some senses to be more visibly disabled – like a person with Down syndrome with clearly recognizable features – or like a person who uses a wheelchair. A visible disability seemed straightforward; direct, an automatic calling card. Like me or don’t. With a non-visible disability, it seemed to me that someone might love me up until they realized how disabled I really am, then BAM! that “love” would go out the window.

I don’t think it’s necessarily easier anymore.

I think one of the biggest battles I’ve seen my friends with visible disabilities fight is one of being seen as a sexual person POINT BLANK. Forget about the automatic calling card; it seems that most people with visible disabilities are shoved into this childlike box in which they are not even seen as having sexual needs or wanting love. They are seen as children, or as castrated adults or adults who are almost monastic, saints in their pure selves….

Can you take a step inside those shoes and just imagine how that would feel? To be a sexual person who desires love and to be viewed by the world as some kind of saintlike, sexless child?!

That would suck on a level that I can’t even wrap my head around.

Yo Tambien – the movie, “Me Too” gets to the heart of that and I love it for that honesty even while my heart breaks for those who experience that reality.

Life with a Superhero is inspiring to me, as there is an example of a man with Down syndrome who is being a sexual man, enjoying that part of life and in love with a person who loves him back.

Which is what I want for my daughter with Down syndrome.

Which is want for all of my kids.

Heck, which is what I want for the whole world.

://kumbaya

4 Years: Essays from This Blog (with drawings, painting, photos and reflections on disability) ($4.99)
The Best Down Syndrome Awareness Videos
All of Meriah’s Down Syndrome Blog Posts and Resources

Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality

When Young People with Intellectual Disabilities and Autism Hit Puberty: A Parents’ Q&A Guide to Health, Sexuality and Relationships

Sexuality and Intellectual Disabilities

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Supporting Down Syndrome Owned Businesses

There is no such thing as “Down Syndrome Businesses” of course; this was for internet search and easy-recognition purposes. This list focuses on businesses which are owned by people with Down syndrome, or by families of allies of our community.

This Down syndrome Business list also focuses on companies which have items available for sale online.

Supporting Businesses with a Connection to Down Syndrome; “Down Syndrome Owned Businesses”

Our Down syndrome community is close-knit. Oh, we squabble on social media and have tiffs here and there, but we also have each other’s backs something fierce. When we have questions about IEP’s or band together to seek out solutions or justice, there is no stopping us.

We also like to support each other.

Here’s a guide with links and information that will help us in supporting Down syndrome businesses (that is, businesses with a positive connection to Down syndrome).

The sections have been categorized: businesses that are owned by individuals with Down syndrome, businesses that are owned by family members of an individual with Down syndrome, and companies that do great work in hiring individuals with Down syndrome.

1. Businesses that are run by individuals with Down syndrome

This means that the product is made by the individual with Down syndrome and the store is run largely through their own efforts.

Moira’s Ventures: Activist Moira Rossi set up a business in which she sells programs training other adults with Down syndrome in self-advocacy. I’m blown away.

Allie Art: Holy Mother of WOW! Allie’s art is gorgeous! Vibrant, color-rich and reasonably-priced. She has jewelry, too.

Designs by Lupita – Dynamic, popping stuff: really lovely. Lupita has prints and more for sale on her site.

Oliver Hellowell Photography

Gorgeous photos. Lots of nature-shots.

“Da Bomb,” Bath Bombs by Morgan Tibbens: Outstanding variety of “bath bombs” (these things you put into the bath to make your experience there something fragrantly divine.

Christian Royal Pottery:

Gorgeous, gorgeous pottery. Those leaves?! The designs? Brilliant! I think his slogan should be, “Stoneware with Impeccable Charm.”

snow-in-norway-4 Tazia Fawley: She makes cut-outs and paintings that are simply vibrant and bursting with energy. She is also the famous artist who gave Prince George one of her paintings, which was displayed in his nursery.

Geoffrey Mikol has an outstanding online shop, Riverbend Galleries, with images that he takes. Photos, calendars and more.

andrewweatherly_winterworlds_large Artlifting: Dreamy, often abstract art from the brilliant Andrew Weatherly. He has a wide collection of everything from rainbow swirls to sunrises.

Megalogy: Megan Bomgaars is one of my favorites from the hit series, “Born This Way,” because she reminds me a lot of my daughter, Moxie. She is also a total rockstar of creative awesomeness, selling everything from her hand-dyed silk scarves to yoga pants.

Poppin’ Joes: Gourmet kettle corn by Joe! Yum.

…and!

Dusty’s Puppets: Dusty makes, sells (and if you are local, performs with) puppets. Very, very cool.
Cameron’s Coffee & Chocolates: chocolate, coffee, tea, even granola and nuts!
DK Arts: greeting cards and prints
Florida Keys Art by Cinnamon – photographs and watercolors
Gracie’s Doggie Delights: stuff your best friend will love

Paying It Forward:

Brittany’s Baskets of Hope

Brittany (an individual with Down syndrome) pulls together gift baskets for new and expecting parents of children with Down syndrome. What a powerful thing to do! Although this is not a business that you receive something in exchange for an item, it’s definitely worth contributing your dollars towards: you can do so here.

2. Small businesses that are run by family and allies of the of individuals with Down syndrome

Meriah Made It: my photography, art, book, t-shirts – all available here!
4Peace Art: Two little girls – sisters of a young boy with Down syndrome – sell cards on Etsy and a portion of profit is donated to NDSC.
Kroc Co Paper Shop: All things paper! Super fun
Mighty Moose Alters: Very exciting shop: the mom modifies backpacks, purses, and diaper bags to accommodate feeding tubes, and is slowly getting into adaptive clothing as well – YESSSSS!
Cristina’s Tortina Shop: cupcakes, cakes & speciality treats made by a mom of an individual with Down syndrome, and who hires people with Down syndrome.
Reason to Bake: gluten free morsels of cookie deliciousness
Dreamer’s Coffee: Coffee distribution company run mostly by parents of individuals with Down syndrome, selling coffee & coffee-accompanying products. Here’s a link to Dawn’s Dreamer’s Coffee

Loving Memories Floral and Repurposed Designs: Lovely shadow boxes, wind chimes, repurposed art.
Beccability Bakery: Handmade marshmallows, shipped anywhere. Yum.
Mom & Me Designer Wreaths: Beautiful wreaths for every occasion and season.
Gracie’s Doggie Delights: healthy dog treats. No additives ever.
Jack’s Bar and Grill & Steamer’s Coffeehouse: jam, jelly, pie filling and gift baskets. This stuff looks delicious.
Sassy Fras Design: vinyl, embroidery and handcrafted design (including things like unicorn embroidered shirts!!!).
Handmade Weighted Blankets: all kinds of handmade weighted blankets, with all kinds of fabrics.
Designer Do Over: E-bay store selling used/new clothing and shoes
Cloth Diaper Outlet: all your cloth diapering needs (including gently used diaper covers!) and more
Creekside Cookies: fruit and cookies!
Waggies by Maggie & Friends – dog treats made by people with Intellectual Disabilities
Imperfect Creations: quilts and embroidery

T-Shirts:

Seanese – Sean, from “Born This Way” has his own line of bad-ass shirts (I want them all!)
Group Hug Apparel – very popular t-shirt company run by Andrew, who has Down syndrome
Reeve’s Tees
The Chromosome Shirt
Kale Chips Apparel: t-shirts and more

3. Businesses with great track records for hiring individuals with Down syndrome

Ever want to know what businesses have a good track record with disability?

That is, that recruit, hire and retain employees with disabilities, that support accommodation and more?

Check out Return on Disability’s 2016 Annual Report.

They have deeply analyzed almost every aspect of employment and disability within major firms, and make it easy for you to decide where you want your money to go.

Added to that, they cover both the United States and Canada.

Diversity Inc also has a list (far less comprehensive): Top 10 Companies for People with Disabilities.

Focusing specifically on our (Down syndrome) community is a little trickier and requires more analysis and research than I can reasonably accomplish in the near future. Instead, I’ll give you the results from the Facebook Hive.

According to The Hive, here are big companies that are doing well in hiring people with Down syndrome:

Trader Joes
Publix
Walgreens
CVS
Petco
Safeway
Kroger
Wegman’s
Amazon (maybe Down syndrome; definitely for intellectual disability)

One Final Note

Please share this post and support businesses with a positive connection to Down syndrome in particular and disability in general.

Remember that our dollars speak the language of business by highlighting the need and desire for inclusion and acceptance, and they speak clearly and loudly.

Feel free to leave links in the comments section to businesses that have not been included.

Thank you!

Many thanks to Missy Skavlem for her 2013 post, “Businesses Owned by People with Down syndrome“, and Michelle with her 2012 post, “21 Days of Giveaways.”

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My Daughter Doesn’t Happen to Have Down Syndrome

A person “happens to have” small and inconsequential things.

Like, they “happen to have” a propensity for chocolate milk, they “happen to have” a love of power ballads. Maybe they “happen to have” freckles.

You don’t “happen to have” something that will affect every aspect of your life, like Down syndrome does.

You just HAVE IT.

You have a disability, you have the presence of absence of a motor function, hearing or sight. You don’t “happen to have” muscular dystrophy, spina bifida or cerebral palsy.

My daughter does not “happen to have” Down syndrome

She has Down syndrome.

The extra copy of the 21st chromosome is reflected in every aspect of who she is: it’s in the curve of her ear, her nose, her stature, her eyes; it’s in her learning style, her desire to run and never stop.

It’s in her metabolism, her speech; it’s in her hair, her scalp, her bowels, her expressions.

Down syndrome is a fundamental part of who she is, and this is the thing: there is nothing wrong with that!

I think when people say that someone with a disability just “happens to have” that disability, they are saying to pay attention to the whole of the person and to not pay too much attention to their disability.

But disability is an intrinsic part of those of us who have one.

Disability makes us who we are, it guides the framework upon which we experience our lives.

I’m deaf; it affects all of my relationships, it affects my employment, my opportunities; it affects how people see me and how they treat me. It fundamentally affects my entire life, so there is no “happen to have” deafness with me, it’s not inconsequential!

So what we need to shift our language to is that having a disability is a natural part of the human experience.

We are not broken.

We don’t need fixing.

We are fine the way we are.

Down syndrome affects everything about my daughter; it’s part of who she is.

She happens to have a love of chocolate milk, power ballads, and she happens to have freckles (which are ridiculously adorable).

And she HAS Down syndrome.

happen to have down syndrome And that’s just fine by me.

More Down Syndrome & Disability Appreciation Posts:

3 Reasons to Say “Disability” (Instead of “Special Needs”)
Let Down Syndrome Define You (a letter to my daughter)
Tell Me Why
Down Syndrome Resources & All Meriah’s Down Syndrome-Related Blog Posts

Wearable Advocacy! Go For It!

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The Best Down Syndrome Awareness Videos

This post is specifically about videos for promoting Down Syndrome Awareness, and they are all easily accessible on YouTube.

This post will be updated as new videos come out or are recommended.

The Best Down Syndrome Awareness Videos

For Kids

Not Special Needs

Awesome, super funny 2:00 short that’s great for anyone, really

Everyone Counts: My Friend Isabelle

Running just 3:59, this short video is meant for children around the ages of 5

Just Like You

13:37 of well-rounded awareness-raising, good for kids a little older

Down Syndrome 101

Solid 5:16 video about the basics.

My only caveat: I want to be care of the things like “help them” because I think it’s more empowering and truthful to say we all help each other (and NOT JUST people with Down syndrome teaching people without Down syndrome to be patient, kind, and so forth; I know in my household, my daughter with Down syndrome taught my typically developing sons how to be more athletic and take risks)

Lea Goes to School

2:43 short on Inclusion that has me sobbing like a small child. SO. GOOD.

For Teens

These are not focused specifically for teens – they are just the ones that I thought would be a good fit with a lot of teens

Chromosomes R Us

5:44 – Hilarious short about the chromosomal fundamentals, all actors with Down syndrome!

Libertad

3:03 rad Spanish short meant for teens

Kids Meet A Woman with Down Syndrome

5:58 video in which children of different ages – and teens – talk with a woman with Down syndrome about Down syndrome.

Things People with Down's Syndrome Are Tired of Hearing

4:44 – British video in which various individuals with Down syndrome talk about annoying stereotypes! This is a great one for teens and adults

For Adults & Trainings

These are the types of videos to start off a training that you might have with typically developing people, the type of videos that you can lead in with and then really flesh out stereotypes and use as tools to dive into deeper conversations.

Reasons to Celebrate

1:48 – This is another masterpiece from CoorDown Onlus, and it’s suitable for all ages. It could be used to kick off a training for adults, or with kids (I lean a little more with teens for this one, but my kids loved it too).

Downistie

3:04, Dutch video. Hold on minute 2:47!!!!

The Interviewer

12:52, made by the brilliant Australian Bus Stop Films, this is an excellent, thought-provoking short.

Guest Room

Highly thought provoking 12 minute short film. I wrote a post on it that provides lots of areas of conversation, linked here.

Frank Stephens' Speech on Down Syndrome

7:14 testimonial about life with Down syndrome from a real expert

Indelible

16:46 – gorgeous Indian short documentary on the lives of a few individuals with Down syndrome in India

Don't Limit Me!

4:18 – Megan Bomgaars’ message to teachers in schools is direct, powerful, and important

Born This Way

This trailer is about 3 minutes long. I think a full episode or a part of an episode of the hit A&E series, Born This Way, would make a great introduction to a Down Syndrome Awareness Training. So much in all of the episodes to springboard from!

Dear Future Mom

While targeting moms who are pregnant with a child with Down syndrome, this 2:13 short (tearjerking) video is told by people with Down syndrome, and addresses many fears that expectant parents face

Dreams in Reality

4:10 – this video highlights everyday triumphs of many people with Down syndrome

Monica and David

1:05:47 – full film. This is a documentary on two adults with Down syndrome who are in love. I wrote about it here; this is a great video to share either as a whole, or in parts.

John and Michael

https://www.nfb.ca/film/john_and_michael/

10:32 – an animated film on intimacy between two men with Down syndrome.

I’m hoping to augment this list of the best Down syndrome awareness videos, so please do list any of your favorites that I’ve missed in the comments!

Also note: I will not link to any videos that do have captions (even “craptions” – automatic YouTube captions). If I can’t hear it, I won’t promote it!

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Down syndrome

Down Syndrome Breastfeeding Resources, Stories & Encouragement

This post is about Down syndrome and breastfeeding.

It is written from my perspective as a mother. I breastfed my daughter with Down syndrome for 2 years, and breastfed my two typically developing sons. While I am pro-breastfeeding, breastfeeding was not an easy experience for me, nor did it come easily.

The purpose of this post is to encourage mothers of babies with Down syndrome to breastfeed and to provide some Down syndrome breastfeeding resources.

This post is NOT meant to shame anyone who did not breastfeed, because Fed is Best.

I just want to encourage other mothers to trust their gut and stick to what feels right for them and their baby, despite what medical professionals or even lactation consultants might be saying. I also want to encourage other moms to remember that our babies with Down syndrome are BABIES FIRST – they come with all the weird, wild an wacky combinations that all babies come with, and so do we.

Learning to breastfeed is a process, with or without the presence of an extra chromosome. We’ve got to remember that!

Please click on the table of contents below if you are looking for a specific component to breastfeeding a baby with Down syndrome, and click on the section that you are interested in.

Down syndrome and Breastfeeding

My Back-story of Breastfeeding Before My Daughter with Down syndrome

The story of breastfeeding my child with Down syndrome is a story that has a necessary prequel, the one about breastfeeding my first born (typically-developing) child:

My typically-developing firstborn son was born in the hospital as a planned C-section due to the fact that he was breech. After he was born, He had trouble latching. The lactation consultants on hand said that his frenulum (the bit of skin that attached your tongue to your mouth) was short and that was the root of the problem. The suggested that I either cut his frenulum or use a nipple shield.

Unable to bear the thought of hurting him, I chose the nipple shield. The lactation specialists said that it was fine, that using it would make nursing that much easier for him. That it was just a bit of plastic that wouldn’t cause any trouble at all.

I believed them…and over the course of the next 9 months, I saw my milk supply steadily dwindle. I never made enough milk to fully feed my boy, ever. I didn’t understand it – other women made plenty of milk and I simply could not understand why I couldn’t. I did everything – I took herbs to stimulate my milk production, ate foods that were good for supply building. I pumped a lot in addition to trying to nurse. But it simply did not happen.

Over time, I became convinced that it was the nipple shield. The only thing, you see, that was different from me and the women who were producing well was that bit of plastic: I was using it and they were not.

When I started to think about it, it made no sense that my milk could actually come in well – my senses were dulled with the plastic around my nipple – how could I really receive the stimulation that my body needed from my baby to produce more? Because it’s really through the aerola that the body picks up on the need to make more/less milk.

Micah was naturally weaned when I became pregnant with Ziggy – my milk supply completely dried up and Micah was quite happy to simply go for the bottle full time.

The Story of Breastfeeding My Baby with Down syndrome

I knew that my daughter Moxie was coming with Down syndrome.

Knowing that, I was completely determined that she be 100% breastfed for as long as possible. Starting out life with an intellectual disability was hard enough, I reckoned. Why not give her every advantage I possibly could? A home-birth, sans drugs (which might hurt her), coupled with as much breast milk as she could handle.

I had the home birth.

22 hours.

Nursing My Baby with Down syndrome

After she was born, she nursed, and nursed hard.

The next day, we were trying again and it wasn’t happening well.

I, having no real experience nursing a child naturally, was completely green. The midwife was intimidated by Moxie’s Down syndrome and said it was likely that because she has Down syndrome, she couldn’t latch well. She pulled out the nipple shield.

While I abhorred going that route again, I too was intimidated by Down syndrome. What did I know of anything? What if her latch really was weak? She had nursed what seemed to be hard the previous night, but how could I really tell, when I didn’t know about these things at all and people were telling me that babies with Down syndrome tend to have a weak latch?

So… I put the nipple shield on and tried that route, but Moxie steadily lost weight.

Breastfeeding My Child With Down syndrome — newborn Moxie

She had been born a bonny 8.8lbs, healthy as a round, pink peach.

My little plump peach slowly shrank and shriveled to 6.8lbs.

Yes, she lost 2 whole pounds in one month.

Down syndrome Feeding Issues

Down syndrome feeding issues are well known on the internet – if you google, you’ll come up with pages of information on Down syndrome feeding issues. And trust me, by that time, I was very busy on google, looking all of it up.

I was waking up Moxie every few hours to feed her. I was pumping and nursing round the clock. I was trying to stimulate my milk production. I was drinking gallons of coconut water and fenugreek tea.

Nothing seemed to make much difference.

After calling La Leche League, a specialist came to my house to take a look at everything and help us. She did, and yet with all of her experience, could not explain what was going on, nor could she give me helpful advice on why my milk supply wasn’t increasing, or why Moxie was losing so much weight.

The La Leche League consultant called another consultant over, and both of them concluded that it “must” simply be a Down syndrome feeding issue, that it must be something to do with Down syndrome.

The next week, I suddenly became paralyzed with excruciating, crippling pain from my waist down in the course of a few hours.

Over the course of that week – the week that I spent in the hospital all alone without my baby or family – I hemorrhaged, had transfusions, innard-cameras, two uterus dilations and scrapings and a raging fever.

Ultimately, I was told that the midwives had left about 3cm of placenta in me– which had become infected.

That had been the source of my milk loss and inability to feed Moxie.

So, there had been no Down syndrome feeding issues; it had all been about placenta left in me after birth. The midwives had not known that placenta from a child with Down syndrome also has an extra chromosome, and that extra chromosome causes it to behave differently than “typical” placenta.

But no-one thought to look beyond Moxie’s Down syndrome at the time.

If she had NOT had Down syndrome, I wonder how things would have been different, and what types of questions nursing and lactation professionals would ask if a typically-developing baby lost 2 lbs in the course of their first month with their mother desperately trying to produce milk that just wasn’t fully coming in.

The Final Chapter in Breastfeeding My Baby with Down syndrome

When I came home, I was still being fed a solid diet of drugs and although the doctors said it was safe to breastfeed, they had never done studies on the effects of those drugs on humans.

As such, I wasn’t going to give it a shot with my Moxie. So I pumped and dumped for one month while my tiny daughter was exclusively formula bottle-fed.

Finally. Finally: when she was a little over 8 weeks old, we tried to breast feed again.

****

I will never forget the feeling of being so weak.

My body had been so crushed by the Placenta Incident, so whipped by the drugs, but the pain, so worn out from the process of healing and hurt that I simply sat there, with Moxie on my lap, and cried over her as I tried to get her to nurse from my breast. I remember how big tears fell from my eyes directly onto her small face, causing her to blink in surprise.

She howled with the breastfeeding effort. She didn’t know what to do with it. She pushed me away. She howled harder. She had no idea how to nurse, and I honestly wasn’t quite sure what to do other than watch some Jack Newman videosand try pushing my breast in her mouth. Again.

And I cried more.

Then tried again. And again. And again. And again. Sans nipple shield, every. single. time.

I tried so much, so often that sometimes I wondered if I was simply a glutton for punishment; why do this?Everyone said babies with Down syndrome had a hard time nursing. Why was I pushing it? I think breast is best of course, but FED is amazing, full stop. I am not against formula – it saved Moxie’s life for the first 2 months, after all.

In the end…it was just that I hadto. This was just something I had to go through and I had to know for myself that I tried as hard as I could – and if it didn’t work, I could put it in the bag and store it and reach for the formula knowing that was cool.

Finally – two or three weeks into the trying – Moxie caught on. Latched on. And never looked back.

She was exclusively breastfed until she was over a year old, with the exception of the introduction of solid food. She continued to be breastfed (and drink cow’s milk) until Monday, April 9th when we simply skipped the single daily nursing that we had dropped down to.

We stopped for the same reason I stopped with Micah: because my milk dried up with a new pregnancy.

Nursing my baby girl was a wonderful experience for me

Without a nipple shield and without placenta in me, I was fully capable of meeting all of her needs.

Moxie has been sick only a couple of times in her life – if only we were all so lucky! – and I give breast milk ample credit for its immunity-building.

Moxie is clever – she has a developmental disability, yes, but she is an extremely smart child with few delays. I think part of that is due to breast milk. She is secure, she is attached – again, I think that can at least partially be attributed to almost two years of nursing.

People have a myriad of assumptions about children with Down syndrome.

It is all too easy for new parents and those who are unfamiliar with disability and/or Down syndrome to fall into the traps of thinking we don’t know enough, that surely those “professionals” know what they are talking about.

Even me: I am deaf and have worked in disability advocacy and the disability community for nearly two decades and yet I still completely went the route of trusting them and doubting myself.

That’s the driving push behind writing this post; I want as much information out there to help support mothers who want to breastfeed and who may be looking for support and affirmation that it can work for a baby with Down syndrome, and that it is the first course to pursue if at all possible.

Down syndrome Breastfeeding Resources

Down syndrome Breastfeeding Print Resources

The Breastfeeding Book: Everything You Need to Know About Nursing Your Child from Birth Through Weaning – The Sears’ youngest child has Down syndrome, and there is a chapter in this book devoted to Down syndrome and breastfeeding.

– The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood – comprehensive, down-to-earth book about pretty much everything.

Down syndrome Breastfeeding Internet Resources

I combed through a lot of sites out there and only put the most relevant and recent content below:

Canadian Down Syndrome Society’s awesome free pdf that’s exclusively about babies with Down syndrome breastfeeding: Breastfeeding a Baby with Down Syndrome

Breastfeeding an Infant with Down Syndrome, from Children’s Hospitals and Clinics of Minnesota

Helping Babies Who Have Down Syndrome Learn to Breastfeed, by J. Renee Toth, posted on Motherhood International

Jack Newman, a Canadian doctor, was the most helpful to me in learning how to breastfeed my baby with Down syndrome. While not specifically about Down syndrome and breastfeeding, his videos and guides are clear, supportive, and really understandable. Jack Newman videos linked here.

La Leche League has such a great reputation and they have helped many, many people. I was not one of the mothers helped, despite turning to them with all 3 of my children. I hesitate to include this link, to be honest, because in reading through what the link contains, I feel like it’s perpetuating old stereotypes about our children. I mean, “often a baby with special needs is reluctant to take the breast..”?! They also go on about the “tongue protrusion” which just is not correct. But it’s your call. Link is here.

More stories about breastfeeding a baby with Down syndrome are found here on Down syndrome Pregnancy

The power of community and asking questions to other parents: Down syndrome groups on Facebook

I went through the long list of resources on the internet and honestly, I just don’t feel like adding links for the sake of adding them. I don’t think anything else is as useful as what I’ve included in this post – either they are outdated by date, or they are outdated by content (one of the highest ranked sites in the “breastfeeding and down syndrome resources” on google linked to “Welcome to Holland.” Yes, really, and yes, I wish I was joking.

Anyway.

Again, this post is meant to be helpful and to encourage moms who want to breastfeed their babies with Down syndrome. While I do believe that breastfeeding has nutritional and emotional benefits that can’t be beat, the ultimate goal here is to feed our kids, and I think we need to be supportive of each other in how we determine (for ourselves) the best way to do that.

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Resources

The Very Best Down Syndrome Book Resources

This post is about best Down syndrome book resources – from memoirs to resource books. It’s intended for parents and professionals working with people with Down syndrome. The ones that I most highly recommend I have put an * before. Remember: your local library should offer most of these books, and if they don’t, you can request it for free. Please add your own recommendations in the comments so we can all benefit from your suggestion!

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, developmental and intellectual disability.

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

Best Down Syndrome Book Resources as Follows

Down Syndrome Related Books on Practical Skills and Training

* 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

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

Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges

The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles

Down Syndrome and Sexuality

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

When Young People with Intellectual Disabilities and Autism Hit Puberty: A Parents’ Q&A Guide to Health, Sexuality and Relationships

The Girls’ Guide to Growing Up: Choices & Changes in the Tween Years

The Boys’ Guide to Growing Up: Choices and Changes During Puberty

Boyfriends & Girlfriends: A Guide to Dating for People with Disabilities

Free Canadian Down Syndrome Society Mind & Body pdf

Down syndrome and Education

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

* Teaching Math to People with Down Syndrome and Other Hands-On Learners: Book 2, Advanced Survival Skills

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

Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion

Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide

Wrightslw: All About IEP’s

Collections of Stories about Down syndrome and Parenting

* The Parent’s Guide to Down syndrome: Advice, 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

Adults with Down Syndrome

Memoirs and Personal Stories About Down Syndrome

* 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

4 Years: Essays with a Little Moxie

An Uncomplicated Life: A Father’s Memoir of His Exceptional Daughter

The Lucky Few: Finding God’s Best in the Most Unlikely Places

Reflections from Holland: A New Mother’s Journey with Down Syndrome

Not Always Happy

Fiction Related to Down Syndrome

The Unfinished Child

Children’s Books About Down Syndrome: Explaining Down Syndrome to Children

47 Strings: Tessa’s Special Code

What’s Inside You Is Inside Me Too: My Chromosomes Make Me Unique

My Friend Has Down Syndrome (Let’s Talk About It Series)

My Friend Has Down Syndrome (Friends with Disabilities)

We’ll Paint the Octopus Red

My Friend Has Down’s Syndrome (Let’s Talk)

Down on the Farm

You’re All Kinds of Wonderful

Kids Like Me…Learn Colors

Kids Like Me… Learn ABC

I hope this collection of the best books about Down syndrome has been useful. Please remember to not let cost deter you from reading what is useful: ask your local library to stock up on these titles if they don’t carry them, make sure your local Down syndrome association or group carries them. Recommend them to your child’s school (their IEP might pay for some).

For more information and to connect with other parents, don’t forget to read my super-comprehensive Down Syndrome Resources Guide my list of Facebook Groups Related to Down Syndrome and of course my long list of free stuff for kids with disabilities.

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Book Related

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:

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.

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.

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.

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.

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.

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.

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.

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.

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Down syndrome

Tell Me Why

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.

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”

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.

Tell me why we care so much about “functioning”

Tell me what that means anyway

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

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.’

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.

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.

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.

Happy birthday, Moxie.

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A Few Memoirs from Parents of People with Down Syndrome

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