Maria's daughter, Jordan Grace.

Why I Can't Imagine a World Without Down Syndrome

I recently watched a documentary called “A World Without Down’s Syndrome” (spelled the English way). The title in itself makes me sad. Yes, my initial response to the news that our second baby would have Down syndrome was shock and fear of the unknown. But I thank God I had the time to get to know the baby inside me and know she had both a heart defect and Down syndrome ahead of time. I had time to process the gift and it made her birth a celebration, not something to mourn.

Hindsight is always 20/20, and though people could have said and did say amazing things to me about their loved ones with Down syndrome, I wasn’t ready to hear them or to accept my future. Unless you are in our shoes, it’s hard to picture having a child with Down syndrome and really experiencing this kind of love. It cannot be put into words, though I’ve tried many times — the feelings I have as a mother, and what I see each day in her sister’s eyes and in her father. Just incredible, unconditional love.

I believe we are called #theluckyfew for a reason. We have the opportunity to know what it truly means to love someone with Down syndrome. I’m not here to convince anyone to love my daughter, I just want to share what I know as an insider.

There are many forms of screening, and we had a few of them done. Down syndrome was not detected in the early stages of my pregnancy. We were told at our 20-week ultrasound that our baby had a heart defect most commonly correlated with Down syndrome.

We, like many others who have been in our situation, were devastated to say the least. Why? Because the doctor who delivered the news was very much for termination of the baby. He told us the baby, who we now knew was the little sister our oldest daughter had prayed for, would be a burden. He tried to talk us into an abortion for a period of time.

As a practicing Catholic, I’ve never believed in abortion. But as faithful as I’ve been all my life, this doctor was trying to talk me into terminating a 20-week-old life inside me. In such deep despair, I found myself in doubt. This doctor, who never spoke about anything but termination, failed to tell me what her life would truly be like.

He was completely wrong. She’s not a burden; in fact, she’s a blessing.

I came to terms with the Down syndrome diagnosis at some point during my pregnancy. I don’t remember when, but I did. I didn’t embrace it, however, until Jordan Grace turned 2 years old. After writing a children’s book and finally filling out an application to become a member of the Down syndrome societies, both local and national, I jumped in with both feet.

We often don’t imagine that doctors could be wrong. We believe what they tell us. But along my sweet journey of endless families telling the same story, I’ve seen how they weren’t given the facts, either.

I never imagined my life would turn out this way. It’s actually a lot better than I expected it to be. Jordan Grace is a regular little girl; she talks, plays, laughs and enjoys every single minute of her life. It kills me to think of my life without her.

Her life is worthy and her life means something. She is a valuable human being and she deserves to be loved, respected and included. It is my life’s mission to advocate for her and for all who are “different.” I cannot imagine a world without Down syndrome.

I have so much pride in my family. We are not perfect, no one is, but we sure are blessed and happy with the way our story turned out. This life is about this beautiful journey we’re on. I am loving every speed bump, every traffic stop, every green light, and every yield!

For those of you who walk with us, we are proud to know you. For those of you who judge us, it doesn’t bother us, because we are living this beauty. For those of you who pity us, you wouldn’t if you knew this kind of love. For those of you who learn from us, we are humbled. For those of you who love us, thank you for opening your heart! We will keep sharing our story of love.

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What Other Parents Helped Me Recognize About My Son's Down Syndrome Diagnosis

I am reluctant to admit I was pretty sad when we received Henry’s birth diagnosis of Down syndrome. I thought I was going to have this “perfect” baby, and now my head was filled with all of the things I thought he wouldn’t be able to do. While I accepted the diagnosis relatively quickly and loved our son unconditionally, I still felt concerned about the future. What did this diagnosis mean for him? What did it mean for our marriage? What did it mean for our family?

I read several books and scoured the internet for support groups those first few weeks. I soon noticed a common theme.

When parents of kids with Down syndrome were asked if they would change their child and take away Down syndrome if it were possible, many parents I read about said no. I did not only read  about one or two parents, but dozens of families. Many of them expressed even if it were possible to take away the Down syndrome, they wouldn’t.

This struck me. I started to realize Down syndrome might not be so bad. After all, if it were, wouldn’t all of these families take it away given the opportunity?

It was the first step in me realizing our son’s future is as bright as we make it to be. He has many opportunities, the same as any other child. Down syndrome doesn’t take away from him, it makes him wonderful.

A family of four, mom, dad, little brother, and newborn baby with Down syndrome

I understand now what these parents were saying when they expressed they wouldn’t take anything away from their child if they could. I know whether Henry was born with 46 or 47 chromosomes, I wouldn’t change anything about him. Henry is Henry, and he’s everything we could have ever wanted in a child.

So Henry, if someday you read this, just remember like Bruno Mars sings, “If perfect is what you’re searching for, then just stay the same.”

Follow this journey at The Lucky Wells

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Businesses Founded By And For People With Down Syndrome

These businesses support the idea that people with Down syndrome are just as capable of success as anyone else.

Read the full transcript:

It’s time to stop underestimating people with Down syndrome.

Here are just a few of the businesses founded by or for people with Down syndrome.

John’s Crazy Socks – An online sock store owned by John Cronin.

21 Reasons Why – Clothing line by Australian model Madeline Stuart.

River Bend Gallery – Professional artist, Geoffrey Mikol’s art gallery.

Hugs & Mugs – A retail and coffee shop in Hoffman Estates, Illinois.

Reason to Bake – A bakery that specializes in Gluten-free cookies.

Buba Bar – This will be the first accessible cafe in Croatia. Tentative opening June 2017

Selfie of autor riding in the car, she has sort blond hair and wears glasses, both her daughters are sitting in the back seat and waving at the camera.

Why I Don't Identify Myself as a 'Special Needs Mom'

I’m a mother.

Many people might call me a special needs mom, but I don’t think of myself that way. I’m a swim mom, a dance mom, a music mom, a girls mom. But not a special needs mom.

When my younger daughter was born with Down syndrome, it was initially difficult to wrap my head around it, but it didn’t take me long to figure out what it meant to me as her mother. There were many “aha” moments  in first six months of her life, but what really defined how I was going to approach this whole, unplanned journey, was my experience as a teacher.

I was familiar with Individualized Education Plans (IEPs) and 504 plans. I had also worked with programs like Special Olympics and knew children with all sorts of disabilities. But it was the teacher part — and the fact that I had worked with children most of my life — that really helped me figure it out. When I went back to teaching after she was born, I looked at all the kids  in my classes. There was a moment when I realized each of these kids had special needs — needs that were different and unique to each of them. The difference was, I had an idea of what my daughter was going to need from birth.

It’s still my belief every kid has their own needs. Maybe that kid can’t stay organized, that one has trouble with handwriting, that one might need to go to the bathroom more than others.  One kid may have trouble studying for a variety of reasons. One may have trouble sitting still. Still another may rarely get enough sleep. Another may never have a pencil. That one is too shy to speak in class.

See, each student has at least one special need. Any need you or I or anyone else has is special to you. In my opinion almost every individual need is special.

I’m the mother of two girls. They’re difficult and funny, each in their own way. As their mother, I’m trying to meet all their varied and different needs. They both have special and specific needs, and I don’t hold one of their needs higher than the other — although I’m pretty sure they would each argue with that statement.

The older of my daughters is nearly 14, nearly a freshman, nearly in high school. She’s steady and silly and quiet and loud. She’s reliable and gets her homework done without any prodding from me. She loves swimming and singing and hanging with her friends. She’s a teen and she’s difficult to read. She’s pulling away a bit (although she still seems to need her mom quite a bit as well). She’s snarky and then sweet as sugar. She makes my head spin and sometimes makes me question everything about my life and my parenting skills. She wants her privacy and she want to be noticed. She wants attention, but she doesn’t want to be the center of attention. She wants her mom, but she doesn’t want to tell me she wants me. She needs me, and she needs specific things from me. I try to come through for her.

My younger daughter is 12. The two girls are 15 months apart, although they’re three years apart in school.

Because of her can’t-stop-won’t-stop personality, my 12-year-old is the complete opposite of her sister. She believes she is the cherry on top of the sundae, the bow on the present, the star on the Christmas tree. She has the kind of confidence we all wish we had. But, as the mother of such a child, I can tell you it’s tough to reign in that kind of confidence. And it’s also very tough for my other, older daughter.

She’s completely honest, holding nothing back. She loves unconditionally and largely, and loves everyone. The hardest thing is she thinks she knows everyone, and that everyone knows her (she seriously believes she is famous). She’s emotional, crying at the drop of a hat. She sticks up for those she loves with a fierceness that’s sometimes scary. She will work her hardest to get you to love her if she thinks you’re worth it.

She’s easily bored, but just as easily amused. She’s a slightly picky eater, but eats the things she loves with gusto. She doesn’t make a fuss when I serve food she doesn’t like; she doesn’t throw a fit and whine about me making something else (maybe she’s learned that’s not happening). She just won’t eat it — but may ask for ice cream later. She’s exhausting and endearing, unyielding in her desire for the things she loves, including her family. She doesn’t stop talking until she gets what she wants. Usually I don’t know whether to pull my hair out or laugh. Most often I split the difference, I smile and shake my head.

It doesn’t really matter to me that one of my daughters has Down syndrome. I’m their mom and have to fulfill both of their many, many needs in many areas of their lives. My two girls are completely different. I’m sure every mom can say this about their children. And they both need me and their father in different ways. They both have their special needs.

Many would qualify me as a “special needs mom.” I don’t see my self that way. I’m the mother of a teenager and a tween. I’m the mother of a swimmer, and of a dancer, and of a singer. I’m the mother of a child who wants to tell me nothing, and the mother of a daughter who wants to tell me everything. I’m the mother of a daughter with a lot of self-motivation, and also the mother of a daughter with a lot of self-confidence.

I’m the mother of daughters.

I’m a mother trying to figure out what each of my daughters needs.

I’m just a mother.

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Editor’s note: This story has been published with permission from the author’s two daughters.

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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