Baby with Down syndrome sitting in a bouncy chair wearing a blue jumper and gumming a piece of bread

What Does It Mean When the Doctor Asks If My Son With Down Syndrome Is 'Thriving'?

I don’t like the word “thriving.”

The Oxford dictionary describes the word “thriving” as, “prosperous and growing; flourishing.” If you looked up the word in a thesaurus, synonyms include, “advancing,” “blooming,” “developing” and “doing well.” I am not yet sure what it means in the context of parenting kids with disabilities. The National Health Service website does not describe what they mean by “thriving,” but does explain “failure to thrive” means your baby is growing more slowly than other children of the same age.

I believe we are all unique and individual, which is why I struggle with the word. We have different shapes and sizes; we grow and develop at our own pace, even as adults. My son, Harry, has Down syndrome, and I’m not sure what doctors mean when they ask me, “Is he thriving?” I wonder if the question is somewhat different to what they mean when they ask parents of “typical” babies the same age as Harry.

I was recently asked, “Is he thriving?” and I must admit my first thought was, “Isn’t that your job to assess?” I’m hardly going to answer “no” to that question. When I think about my son thriving, I think of all the amazing things my child has accomplished. I am not focused on the delays or what other “typical” babies are expected to be doing at this age.

My answer to this question was very bland: “He feeds well and is growing nicely.”

What I wish I’d said was this: “He is amazing! He has a smile that lights up a room. He has a laugh that could melt a frozen heart. He has the most beautiful, expressive eyes. His hands have the softest, gentlest touch on my face.”

To me, the happiness of my child is as important as when it comes to his development. After all, isn’t that what having children is all about anyway?

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What Inclusion Really Means

I can count on one hand the amount of people with disabilities I knew as a kid — a few from our church and a couple from the neighborhood. I did not know anyone with a disability from my Catholic school, my soccer team or acting class. I don’t think anyone with a disability played tag with us or rode bikes with us to the pool. Even though I later worked at a summer camp with kid with disabilities, I still had very few relationships with people with disabilities. I originally studied special education in college until I discovered my other passion — writing. After a short career in television and a long career in child welfare, I returned to the work I loved, where I felt I most belonged — advocating for and with people with disabilities.

That singular professional role changed one late summer morning in 2014 when I was 12 weeks pregnant with my second daughter. A prenatal blood test revealed she had Down syndrome. When my doctor told me my baby had Down syndrome, she asked if I planned to terminate. Why was this the doctor’s narrative? I wondered if it was because this doctor might not have gone to school, grown up with or worked with people with disabilities. I wondered if her own isolated bias impacted her worldview and her approach as our doctor.

Lorelei Green, age 3

Picture a young boy who only sees people with disabilities occasionally when he is at the movies or grocery store, and a group of four to eight people with developmental disabilities, along with a paid staff, shows up. (Those individuals live in a group home and are on a “community outing.” This type of outing is what some people call inclusion. But, when you go to the movies or grocery store, do you call it a “community outing?” Probably not. This is not inclusion.) What does that look like to this young boy? He probably sees them as different; not like him. He goes to the public school but there are no students with disabilities. The children with disabilities are bussed to a different school. He goes to college, gets a job, and he even laughs at and retells jokes about people with disabilities. He uses the “r” word when he’s angry with his beloved sports team for screwing up a play. What will this boy’s narrative be if he’s told his unborn daughter has Down syndrome? In those early days of the diagnosis, he will probably be incredibly lost and confused. How many other mothers and fathers receiving the news that their child has a disability feel this way? If he reaches out to parents of kids with Down syndrome, his inexperience can turn to knowledge, and he can become a father with a purpose and a drive to change his community.

Today, expectant parents continue to be advised on Down syndrome by medical professionals who have little to no knowledge on what it is like to be a person with Down syndrome or a parent to a child with Down syndrome. Their “expertise” is often based on outdated and inaccurate information. Parents often trust their advice because they don’t know any different. This is where loss begins and a society goes unchanged. This kind of ignorance is not just sad, it’s devastatingly painful and unjust to me.

To merely judge our doctor is unfair. After all, she had mentors and colleagues, she read what she thought was the latest research. But, experience can have a much more profound impact on knowledge than words in a book. She was a fine doctor who delivered both our daughters and since delivering our second daughter, her narrative has changed. As we look toward the school years, we begin gathering research and preparing for a possible battle: the Individualized Education Plan (IEP) meeting. We hope we do not have to fight administrators whose society failed them too. We do not want our daughter included in the classroom with her peers just for her sake but for the advancement of all the children in the classroom. Children with and without disabilities grow up to become teachers, doctors, lawyers, business owners, community leaders, activists and moms and dads.

When a boy in our daughter’s preschool class grows up and is told his daughter has Down syndrome, will he be scared or empowered? Will he have the experiences he needs to be the father and advocate he wants to be?

Will a young girl in our daughter’s dance class grow up to become a doctor who someday tells expectant parents their beautiful baby has Down syndrome? Will she tell those parents they can still have dreams for her daughter — that she will go to school, work and live her life?

In a truly inclusive society, we see and nurture everyone’s potential. We do not label and isolate. We embrace and empower everyone. In a truly inclusive society, children with and without disabilities see each other as classmates, teammates and friends. They are known by their names, not by their diagnosis.

In a truly inclusive society, no one could fathom a world where our children with Down syndrome should not exist.

In a truly inclusive society, I don’t have to write about the importance of inclusion because it is simply a natural part of the human experience.

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Meagan Nash Asks OshKosh B'gosh to Include Her Son, Who Has Down Syndrome, in Its Ads

Willow recovering in the hospital but looking cheerful.

What Doctors Didn't Tell Me About My Daughter's Down Syndrome

When my daughter, Willow, was born we heard over and over again how weak she was because of her Down syndrome. Doctors and nurses used words like “fragile” and “frail.” Willow’s medical file was filled with even uglier words. “Failure to thrive” topped the list. Hypotonia, or low tone, quickly followed. Every word reeked of weakness. If only they had told me…
Jennifer holding baby Willow.
This past week, I used every muscle in my body to restrain my daughter as she lay in my lap, mask on her face, breathing in the medicine that would eventually put her to sleep for surgery. She’s 3 and a half years old. I’m 39! What happened to the girl once described as weak?

Willow’s “sleepy medicine” eventually kicked in and her tonsils and adenoids were removed. She also got some new tubes put in her ears and a fancy pants hearing test performed on her while she was under anesthesia. Despite my fears, everything went smoothly. We even have proof that Willow can hear us perfectly! That whole “I can’t hear you” bit she pulls won’t work anymore. Nope.

Willow in the hospital but looking cheerful.

Going into surgery, I heard recovery would be rough, so I prepared for the worst. I ordered suppositories in the event Willow wouldn’t take her pain reliever. I bought every flavor of gelatin Wal-Mart carries. I even called my mother to stay with us for a week and help out. Sorry, husband.

While Willow woke up from surgery a little sad, she quickly recovered, especially when she saw the hospital had some of her favorite DVDs on file. Within a few hours she was slurping a grape popsicle and watching  Disney’s “Tangled.” Weak? I don’t think so.

Willow with a purple mouth from eating a grape popsicle.

The next day Willow was released from the hospital and we headed home. While it took her a good day before she would drink or eat anything, Willow wasted no time getting back to her favorite pastime, dancing.

Willow dancing with her sister.

We used a total of one suppository. My older kids ate most of the gelatin. And Grandma, well, I guess you could say she carried the “burden” of being Willow’s favorite dance partner for the week.

Willow dancing with her grandma.

I won’t say it’s been easy, but I guess I thought it would be harder.

If only they had told me…

If only doctors had told me the baby they were labeling weak would someday be the definition of strong.

If only they had told me the baby so many would doubt in the beginning, would grow to inspire.

If only they had told me the baby they thought was fragile would prove unbreakable, surviving multiple surgeries and procedures.

If only they had told me that despite my baby looking weak, Down syndrome is characterized by strength.

If only they had told me… But then again, I don’t know if I would have believed them. I needed to see it for myself. And boy, is she beautiful. Strong and beautiful.

Willow and her sister smiling.

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Young man with Down syndrome working in an office.

21 Things Everyone Should Know About People With Down Syndrome

March 21 is World Down Syndrome Day. Since 38 percent of Americans know someone who has Down syndrome, I thought it would be beneficial to spread some awareness about these people who make up so much of our population. Without further adieu, here are 21 things everyone should know about people with Down Syndrome.

1. They come in all shapes, sizes, genders, and races. They don’t all look like the actors you see on TV!

2. They can go to school from preschool age all the way up to their mid-20s. If they want, they can even go back to school once they’re older.

3. Once out of school, they can get jobs based on their skills and qualifications.

4. Many can go shopping and provide for themselves.

5. They can socialize well with others and often have friends in school, at work, and in their day-to-day lives.

6. Many can take driver’s training and maintain a driver’s license.

7. Some individuals enjoy watching TV for hours on end.

8. Some individuals could spend an entire day running around outside, playing sports or just basking in the sun.

9. At the proper age, they can drink alcohol.

10. They are liable to get the stomach flu and a common cold from time to time.

11. Some individuals are social butterflies, always wanting to be the center of attention or the class clown.

12. Some individuals are quiet, and more content observing conversations than being a part of them.

13. They can have many hobbies, like photography, drawing, and writing.

14. They can go on to have a wide range of successful careers, such as acting, singing, teaching, and so much more.

15. Some individuals can carry on lengthy conversations about a multitude of topics.

16. Some individuals are more keen on listening than talking.

17. They can have many emotions, including joy, fear, sadness or anger.

18. Provided they aren’t allergic, they can have and take care of pets.

19. They can have boyfriends or girlfriends, husbands, wives, and children.

20. They can live long and happy lives surrounded by their loving families.

21. Genetically speaking, they have all or part of a third copy of chromosome 21, hence World Down Syndrome Day occurring on March 21 (3/21).

If you look over this list, you may notice something. These facts aren’t unique to people with Down syndrome. In fact, we can all relate to the first 20 things mentioned on the list. The only difference is that extra bit of chromosome 21. That’s all. While that genetic difference affects some cognitive processing and physical features, they live the same lives. They have families and friends, schools and jobs, and a wide range of hobbies and emotions and characteristics. To sum it up, they’re just like everyone else.

So, on World Down Syndrome Day, I think this is something important to keep in mind. By all means, let’s celebrate people with Down syndrome! Let’s show them we know how awesome they are. But, let’s also remember to do that every other day of the year. Treat them like you would treat anybody else. Remind them that they’re just as awesome as the kids they sit next to in class or the coworkers they chat with around the water cooler.

Let’s use March 21 as an opportunity to let the world know that people with Down syndrome are no different than anyone else!

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Boy in car seat in car, wearing beanie and laughing

Why Allies Matter to the Down Syndrome Community

The wheel has turned round for a fifth time since my son Rukai joined humanity, and here we are on the cusp of another World Down Syndrome Day  —  Tuesday, March 21. “Yeah, rah rah, so what?” you might say. “What on earth can you tell me that someone already hasn’t?”

AHA! There’s the rub…

I can’t tell you a thing.

I can’t tell you a thing, because just as I predicted five years ago, Rukai is pretty much exactly like any other kid, and there’s only so much clinical jargon I can hurl about when it comes to the condition which is supposed to make him an anomaly.

But (and you know where this is going) he’s still not. He’s a kid. A 5-year-old boy called Rukai. He is no one to fear, nor to pity, nor to discard.

A kid with possibility. A future. Feelings and emotions and a distinct, raging lack of opportunity lain before him by others because he has a learning disability.

That is what is to be pitied. But I digress…

Of my son, I can’t tell you a thing, other than to ramble on about what he has learned, how he’s developed, how much more deeply he’s embedded himself into my heart — a heart which in size is quite pathetic in comparison to his own. That little, huge heart which seems to me to begin at “delight” and end at “joy.” That heart which loves first, questions and answers all in one breath and demands to light up, to elevate, to soar.

I have not seen Rukai do self-pity, or jealousy, or hatred, or envy, or malice.

He sure does crabby and stubborn and annoyed, but the real dark stuff? No, I have only seen light here.

And this is a problem, how?

The other day I saw a clip of some televised interview where the subtitle still referred to my child as a “Down baby”— those poor uneducated editors or producers or whomever’s job it is to categorize human beings throwing that phrase out as they’d throw my boy out, without any inkling of what they’re missing. The presenters’ discomfort seemed palpable to me, as if they no idea where to look or what to say other than “he’s so cute!”

But I know better. So many of us know better. And as God is my witness, I hope with all my nattering for half a decade, and from all the others who know, with all our angst and anger and fear and upset and triumph and compromise and adjustment, with all those things…

I hope you know better, too.

Unless you want a full run-down on every milestone my son’s hit, or every holiday we’ve taken, every party we’ve attended, every school day we’ve enjoyed, every dance class we’ve loved, every friend we’ve made.

I can’t tell you a thing.

Because what I’d say would be so typical, so ordinary, so normal, that it would bore you to tears. But out there in society, there is such an undertow about this condition, the misinformation churning, threatening, sucking people under the mire of falsehoods, of confusion, of gut-wrenching fear.

Lies, lies and damned lies.

Yet here I sit, pounding away on keys that have so many stories hidden within them. I know the past year has been difficult for the Ds community, in terms of political tides, so-called medical “advances,” those things which, prior to having Rukai, I would have welcomed with open arms. Because I only heard what medicine and society were saying: “Problem.” I only heard what fear was saying: “You can’t handle it.”

And today, five years on, I answer them all: Joy. Fortune. Stronger than you think.

I won’t kid you. Life is hard. But before Rukai, life was harder.

Because before Rukai I didn’t have unconditional love. I didn’t have someone who was like a sponge, eager to learn and sharp as a tack. Although he takes longer to learn, he does learn. But more importantly, I learn.

More still, you learn.

So now that you’ve heard me for that half-decade… Now that I’ve written those words which stick in your craw, which jab you like a sharpened elbow in a shopping mall…

Take them.

Take them in, pack them up, wrap them in a tight bow, and give them away.

Go ahead and teach someone else. Tell them. Help them see. Help them understand.

Down syndrome is not a disaster. It is a difference. People with Down syndrome are people. They are not a malfunction. They are not a flaw. They are not a problem.

They are not “they.”

Rukai is my son. Rukai is my heart. Rukai is my world. Rukai is a person. He is not “Down syndrome.”

Since the day he was born, I made a promise to him, in my cold hospital room, listening to Adele singing about a fire starting in her heart. Mine was blazing too.

“I’ve got your back,” I whispered. “Welcome to the world, little man.”

If you’re reading this, if you are feeling this, if you care about this — take it and teach. Welcome him to the world once and for all.

I cannot do this alone.


Follow this journey on Down In Front, Please.

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