Sue and Sean Adelman thought it was about time a book’s main character was a person with Down syndrome. This way, kids like their daughter, Dev, could have a literary hero, families new to the genetic condition could find some hope and children unfamiliar with disability could learn that different is just… different. Not less.

So the Adelmans created a book series called “Sam’s Top Secret Journal.” Book one (“We Spy“) hit stores in May 2012, and the next two (“Secret Island” and “Memorial Day”) are in final production. All books are middle-reader range and suggested for upper elementary school classes.

“It’s our desire for kids with and without a diagnosis to have literary figures they can identify with in a positive way,” Sue Adelman told The Mighty in an email.


Eighteen years ago, Dev Adelman’s Down syndrome diagnosis surprised her parents.

“Getting news that your child is ‘disabled’ is hard,” Sue Adelman told The Mighty. “No way around it… We just treated her like her older sibling.”

Today, Dev, 18, is a high school senior in Seattle, Washington. She cheerleads, skis and plays soccer and piano. She loves that her parents’ book series’ main character, Sam, is based on her life — it makes her feel famous.


DevIBre (1)

“I think I’m a much better person having been included in the world of Down syndrome,” Sue Adelman told The Mighty. “I’m more optimistic, more patient, more willing to give someone a chance.”

In the video below, you can meet Sean and Dev Adelman, in an interview they gave when “We Spy” debuted. To purchase the book, head here.


On a recent road trip to central Nebraska, my son, Marcus, leaned back and sighed, “This is the good life.” That particular weekend there was much ado about Nebraska’s slogan, “The Good Life,” with talk of change. So I smiled in agreement while my mind wandered over the parallel metaphor to our world.

I admit, it gets old defending the place you call home. Sometimes a person gets tired of explaining what exactly is good about “the good life” to those who say they could never… To those who are filled with ill-conceived notions and stereotypes about our day-to-day… What beauties there are to see and experience.

Like many kids and their hometowns, I knew I’d leave Nebraska when I grew up. But the days went by and, though there were other opportunities along the way, I chose to stay. And sometimes there were circumstances that chose me instead. Which brings me to the parallel metaphor. Life with my son, Marcus.

It’s not a new idea, the metaphor of the physical place we find ourselves and our larger fate. So here we go…

Marcus & Me - The Good Life Every October we celebrate Down Syndrome Awareness Month. We celebrate because Down syndrome is part of who Marcus is. Like many families who find themselves in an unexpected place – it is not about making the best of it; it’s about celebrating the best of it. What I’d like to say to those who don’t live in the place we do: It’s not what you think.

Yes, sometimes storms come in and make life difficult. Like Marcus’ heart surgery when he was still a baby, handing my child over to the surgeons who would cut and mend, tear down my being and build us all up again, stronger, safer. And there are many beautiful places on this earth, including the amazing sunsets that linger on the horizon here. Yes, the same sun rises and sets in our world as yours and my love for my son is no more and no less than the love any mother can have for their child. I see his beauty, his talents, his ambitions, and these parts of him are not diminished by Down syndrome. My biggest disappointments come not from Marcus’ disabilities but rather the limitations of other people to recognize his abilities.

To me, the good life means preparation: when it’s cold, you put a coat on. The good life means consideration: please and thank you and working hard is something to be proud of. The good life means both seeing beauty in the peaceful moments as well as celebrating with the roar of a crowd.

For us it is also about a lifetime full of laughter. Marcus’ guiding principal is to make sure the people around him are happy. It’s nice to live with someone who has other’s happiness as a top priority.

Yes, Marcus lives with us. By the way, so do 6 million other adult children in this country. And just like many of them, this is a choice we have made together. There are options; we chose this one.

It’s not always an easy life. (Boring!) It’s not the perfect life. (Who has that?)

It is, in fact, quite a good life.

Check out more on Grown Ups & Downs.

When Krista Rowland-Collins’ daughter, Adele, was diagnosed with Down syndrome, the new mother realized few resources told positive stories about babies with the genetic condition. She didn’t want future moms to get the diagnosis with an “I’m sorry” and a list of symptoms.

So she began making care packages in her basement that she sends to parents of babies with Down syndrome. She calls the project, “Adele’s Over the Rainbow Baskets,” and blogs about raising a child with Down syndrome on “A Perfect Extra Chromosome.”

In the Global News segment below, you’ll meet a recipient of one of those baskets — Kerry Godbout.

“I remember [our son] looking at me, and he’s thinking, ‘I’m not what you expected but love me anyways,’” Godbout told Global News. “And we did, we instantly did.”

Watch this beautiful story below:

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Just over six months ago, I took a dream job with a small family foundation focused on serving families and children with special needs. I’ve spent this time 100 percent focused on the Down syndrome community – and specifically, working for an innovative social enterprise that is helping to strengthen and support the fundraising, social media and community-building infrastructure of the many small, local Down syndrome associations around the country who put on annual events known as the NDSS Buddy Walk®. Here’s what I have learned during my time working within the Down syndrome community:

1. People-first language is essential. One of the first things I learned is that we never call children with Down syndrome “Down syndrome kids” or “Down’s kids.” People-first language means always leading with the child or individual. Down syndrome is merely a condition and one part of the whole child. A child might have red hair, green eyes, a fantastic smile and Down syndrome – it’s just one factor and shouldn’t be considered the defining one. Similarly, you might meet a young adult who has Down syndrome – but that young adult is so much more than just that one diagnosis. In our words and in life, we must always focus on the person first.

2. The ‘R’ word is never OK. It blows my mind that there are still people who say, “Oh, don’t be so serious, I’m just goofing around, I don’t mean any harm” to defend their use of the ‘R’-word. STOP using it to describe yourself, to describe your friends, to describe anything. Even – and especially – if you think you mean well, stop saying it. It is a horrendous thing to use language that hurts others so deeply it makes them want to vomit. Why would you ever want to use a word so hurtful and hateful? Yes, we as a society used to use that word – but that was before we knew better. File it away with other hate speech and do not use this word. Please and thank you.

3. The medical establishment has it wrong about Down syndrome. Perhaps one of the most shocking things I’ve learned during my time working in this amazing community is just how negatively most medical practitioners share this diagnosis with families. It’s usually preceded by an “I’m sorry” and delivered in a serious or even sad tone. Are you kidding? These people either just had a beautiful baby or are about to have one – unless there’s some sort of life-threatening situation going on, let’s start with congratulations! I loved this blogger’s take on the diagnosis and how this important news should be shared. Clearly, doctors know a lot – but they don’t know everything, especially when it comes to Down syndrome. The docs who deliver the news so gravely clearly haven’t been to a dance party with kids or adults who have Down syndrome.

4. The Buddy Walk® is an important event worthy of your support and participation. There are many causes in this world – some get a lot of attention, others are lesser-known. I love the way a rare disease like ALS became part of the country’s consciousness this summer when the ice bucket challenge went viral. I wish for something like this to happen to the cause of Down syndrome awareness, because these kids and individuals are part of our community and part of us. As is often said in these circles, “We are more alike than different.” It’s so true – but sometimes it takes having a friend, neighbor, relative or colleague with Down syndrome to learn how truly alike we are. I encourage you to seek out the local NDSS Buddy Walk® in your area, find a team and walk with them, or simply make a donation. Funds go to much-needed support services that can be a real help to families and individuals with Down syndrome. And you will never attend a more joyful, fun and family-focused event than the Buddy Walk.

I will leave this job a better person – and that’s not something we can always say. I’m so glad my chosen career path brought me into the Down syndrome community even if for just a short while, and I can honestly say that I will always be a fan of the Buddy Walk and the great work that local and national Down syndrome organizations are doing for families, children and adults with Down syndrome. Next time you see someone with Down syndrome out in your neighborhood or community, smile and say hi. You might just make a friend for life.

This post originally appeared on DS-Connex.

When Reddit user “MrsEtcheto” learned her unborn child has an increased risk of having Down syndrome, she reached out to strangers for advice.

“While I know this isn’t a diagnosis, I want some insight as to what to expect, how to prepare and how to better parent a child with [Down syndrome],” she wrote on Reddit. “I don’t want to go into this blind. I want to be the best parent I can for her and help her reach her own goals as best I can.”

Here’s what Reddit had to say:

1. “Let your kid be your kid. The traditional milestones may be pushed out a bit further, but when you hit them, they’ll be that much sweeter. Don’t grieve for the child you think you lost; celebrate the child you have.”

2. You will be your child’s biggest advocate. Don’t accept something just because it’s from a teacher or a doctor. The more you fight for services the more you will get them.”

3. “When you hold your baby in your arms for the first time, you fall in love. Downs or no Downs. It makes no difference. A child is a child. And that child needs you to love them no matter what.

4.Don’t ever let someone tell you your child can’t do something. What the heck do they know?”

5. “Check out the blog, ‘Noah’s Dad,’ great stuff from a great parent of a little boy with Down syndrome.

6. The Down syndrome community is an awesome group no matter where you go, and I’d suggest involving yourself with other local parents who have kids with DS.”

7. Treat the little one like you would any other child; everything will be fine.”

8. “Whether your child has Downs or not, it’s going to be wonderful experience.”

9. Congratulations. You’re going to be a great parent.”

Related: If you haven’t seen the video below, it’s worth your time.

Have advice for this mom? Leave a note in the comment section below.

Editor’s note: Some responses above have been edited and condensed.

Screen Shot 2014-09-22 at 6.55.19 AM I typed quickly, with a fervor and a fire that couldn’t be extinguished.

Then, with the same intensity, I deleted every blackened letter and stared blankly at the white space.

The words weren’t right.

They flowed about as fluidly as liquid through a straw with a lemon seed stuck in its interior.

I closed the computer, tucked it safely in my school bag.

It was sandwiched between data meeting agendas and notes for the next day’s professional development.

I beckoned sleep, but sleep did not beckon me.

My head held ideas tossing forward and back, as the sheets enveloped my body, mimicking the motion.

The thoughts won the unfairly-weighted battle, and I retrieved the sleeping computer.

It whirred noisily in my lap and wakened as cantankerously as a teenager on a Saturday morning.

I have wrapped Down syndrome in a package.

The edges have been folded and carefully secured with transparent tape.

A big, bright, shiny bow has been looped, swooped and pulled until a masterpiece tops the beautifully adorned parcel.

This is the way I present it, just as this is the way it was presented to me.

Most of the time, Down syndrome is gifted and received with the joy and excitement of a child on Christmas morning.

It is beautiful.

It is most worthy of pictures and “oohhs” and” ahhs.”

It warrants proclamations of exultations and declarations of appreciation to the Most Gracious Giver of Gifts.

It has opened doors and paved paths.

It has introduced new friends and greater faith.

It is a part of our life — one I wouldn’t trade for anything in the world.

But some days, I recognize the struggles Baker has and will continue to endure, and my heart aches for him.

As a baby, as a toddler, as a child, as a teenager, as an adult, in some way, shape or form, his different ability will hinder his development.

He will work longer, try harder, more persistently persevere.

Menial tasks will be more arduous.

I am his mother. His protector. His cheerleader. His advocate.

As such, I want to shield him from all of the hurts, all of the hard days, all of the unkind words, all of the sideways stares.

And when I admit that, the so carefully crafted carton begins to unravel.

The tape begins to lose its adhesion.

The bow is unfastened.

Down syndrome breaks free, and when it does, something more magnificent than even the most marvelously manicured package manifests.

It no longer conforms to the confines of a casing.

The wrapping paper has been relinquished.

There is beauty in the imperfection.

A beauty no box can contain and no décor can disguise.

The packaging has been cast aside.

It has been trampled on by our traipsing through the living room in our nightly routine of catch-me-if-you-can, and stop-me-if-you-dare.

It has been diminished in the laughter emanating from our back porch dance parties illuminated by the moon’s glow.

It has been squelched in the squeals of tickle fights.

This boy of mine, he is a present no package could contain.

This post originally appeared on Baker Is Our Dream Come True.

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