Staying Calm When You Educate People About Down Syndrome

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For those who know me, I can be hot-tempered, saucy-tongued and not shy about telling you what I really think. I can still get that way, but after having my daughter, Erin, I have learned the value of staying calm.

For the first six years of Erin’s life, I really didn’t butt into people’s lives or try to speak out too vocally for my daughter. “Just keep us invisible and they won’t bother us.” However, a conversation I had with an acquaintance of my husband seemed to have flipped a switch. My husband and I were at a wine dinner with 100 other people and I sat next to a gentleman who had a fascinating life story. I was drawn into it, even talking about his fears of having a child with his wife because they were older when they started trying. He actually said, “My wife and I were afraid we would end up with a mongoloid.” When I heard that, all of my blood drained from my body. So many thoughts went through my head, but fortunately a quick, deep breath helped patience prevail. I said, “Actually, I have a daughter with Down syndrome, and that is how they prefer to be referred to now.” As I was doing an inner happy dance at my ability not to splash pinot noir into his face, he looked mortified and apologized profusely. I stayed calm and said, “I understand your concerns about having a child when you’re older. But, now that you are aware of how to refer to someone with Down syndrome, I’m sure you will continue to tell your story with that label instead of ‘mongoloid.’” He smiled and we kept talking for several minutes.

Since that day, I’ve gone out of my way to meet and talk to people with Down syndrome who are out and about or with their families. I recently ran for my local school board to help promote the importance of inclusion starting in school. While I did not win, I have found improvements in my daughter’s school experience as well as other students with disabilities. Parents of “typical” children approach me and talk about what a joy Erin is when they volunteer in the classroom. When we go to playgrounds on Saturdays, her classmates run to play with her. It’s such a great feeling.

That’s what it comes down to: a teachable moment. There are many people who just don’t know what they don’t know. Being calm and patient when trying to correct their misunderstanding can create a beautiful change. Don’t be afraid. Don’t try to be invisible anymore. Take a quick, deep breath, and help educate the world one person at a time about the joys and benefits of inclusion and acceptable labels.

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Thinkstock image by DenKuvaiev

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Why I Can't Imagine a World Without Down Syndrome

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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

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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

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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. johnscrazysocks.com

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

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

Hugs & Mugs – A retail and coffee shop in Hoffman Estates, Illinois. gigisplayhouse.org/hugsandmugs

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

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

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

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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.

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

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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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