The Doctor Didn't Follow Protocol After Our Down Syndrome Diagnosis

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Going to the self-help section of any bookstore is rough. You go because you have something that needs fixing, right? So you’re pretty excited because you’ve committed to at least this part of the process. Then the books like “Overcome Your BIGGEST Fears!” begin to pop out at you. You know if you just read these books, you too will achieve that success and overcome your biggest challenges. But after a few weeks of reading and a lack of quick improvement, you’re either back where you started or in an even worse place.

The big words in these book titles sell you on them, but I don’t believe they’re based in our realities. I believe they create an unrealistic expectation that might actually end up being worse for the person facing a major challenge or “mountain” in life.

When we had our son, Henry, over six years ago, we were faced with our biggest “mountain.” Henry has Down syndrome. It’s an impossible task to explain how a parent feels when they first hear the news. When Henry arrived, we didn’t know he had Down syndrome. We asked the question immediately after delivery because a previous ultrasound indicated that he might. The doctors and nurses assured us there was nothing to indicate he did, but they would do a blood test to be sure. They added they were 90 percent sure he didn’t. With that, we felt some relief and enjoyed holding and snuggling this beautiful new boy.

Our pediatrician arrived within a few hours to check Henry out. We had never met this woman, since we had only been in this town for nine months. She looked Henry over, handed him back and said, “Well, I am about 80 percent sure your son has Down syndrome…” 

As our hearts descended into the pits of our stomachs and tears began to well up, she added these words: “…and that is awesome!”

We looked up, confused, as she turned around her laptop and opened it up. She showed us pictures of her daughter who has Down syndrome — a beautiful young girl, 5 years old in pigtails, playing soccer, cheering and seemingly having a blast in life. A slight smile began to invade our shell-shocked state.

This was the first time we realized our mountain was being minimized — not overcome, because we both still had a ways to go to fully understand and accept this, but minimized. We also began to believe that perhaps this choice of pediatricians was not so random, and that she was meant to be in our lives. We still have a close relationship with our pediatrician. She has given us guidance and understanding we feel we wouldn’t have received elsewhere within our community.

In the days, weeks, months and even years ahead, I began to look back at our process of acceptance. I noticed so many times and ways we minimized our mountain. They came in different forms and at different times. There was never a single moment, but many amazing, wonderful moments. It came in the meals our friends made for us, educating ourselves thoroughly, the local Down syndrome support group providing a gift basket, meeting other parents in our situation, getting to know people with special needs and so much more.

To this day, I have not nor do I wish to “overcome” having a child with special needs. That initial mountain of ours has become the greatest thing that ever happened to us. Henry has inspired all of us, and it’s hard to express the love and happiness he provides each day. We minimized our mountain so we could manage the hill, and we found a way to come out stronger and happier on the other side.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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To My Daughter's Teacher, From 'That' Parent

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Dear Teacher,

I’m sorry I’m “that” parent. That parent who calls, emails and sends notes in the agenda asking about how my child, Phoenix, is keeping up with the expectations of the classroom. That parent who asks you for the names of the kids Phoenix plays with so we can ask her about her day. That parent who expected the school to be fully prepared to support her on the first day of school and every day thereafter.

Please understand that my expectations for excellence lie not just with you, but with our entire system. As a teacher myself, I can understand the difficulty of achieving balance between meeting the needs of all the students, producing and performing lesson plans, meeting the demands of the administration, coordinating with other professionals like occupational therapists, preparing student agendas and handouts, writing report cards and writing and implementing IPPs (individual program plans).

I know it’s a big job, and I know you’re doing it to the best of your ability.

However, I’d like to tell you about my job.

Johanna Hirons's daughter

It’s my job to love, nourish and support this little girl to be the best she can be with the challenges she has been born with. So while you focus on teaching my child the skills she will need to pass this year, I focus on the skills she will need for her lifetime.

I look at barriers like weak hand muscles and poor fine motor skills and think, “Well, we’ll just teach her how to type.” I arrange occupational therapy to help us find ways to modify and adapt clothes to make them easier to put on and take off. I work with Phoenix on reading flashcards, not only to teach her the fundamental skill of reading, but to have her practice speech and articulation daily. I was the one to teach her sign language as a baby to help her communicate her wants and needs before she could speak.

I advocate. I write. I research and I connect with others like me in the Down syndrome community who are blazing a trail, demanding equality for our children.

You see, because Phoenix was born with an extra 21st chromosome, she falls into a group of people who are some of the most marginalized in our entire society. So not only do I worry about her ability to make friends, complete school work and negotiate the education system, I also worry that her inclusion in this very visible group makes her a target for low expectations, preconceived ideas about her competence and outdated ideas about where children like her “belong.”

Did you know there are still administrators and teachers who believe children like Phoenix don’t belong in a classroom of their peers? That it’s a waste of resources to teach a child like Phoenix who may never achieve a high school diploma, go to college or contribute to society in a meaningful way? (Their biases, not mine.) Did you know it’s only within our lifetime that children like Phoenix have been entitled to go to school with their peers?

Did you know that in the generations preceding mine, parents with a child like Phoenix were encouraged to abandon their child in an institution because this child was considered uneducable? That it was doctors and experts who recommended this, and that it was families like mine who pushed back to make this practice unacceptable? Did you know there are places in the world where this practice still happens?

Did you know that these ideas still influence perceptions of children and adults with Down syndrome today? And that adults with disabilities face a large barrier to finding employment?

Dear Teacher, I’m aware of these things.

I’m aware of the prejudices and biases. I know people look at Phoenix and underestimate her abilities and knowledge. People look at Phoenix and they lower their expectations. I see it all the time.

I’m not trying to interfere when I ask to speak to her aide about how things in the classroom are going, or when I question what Phoenix is able to do. I need to know your expectations for what her year looks like are just as high as mine. That you will expect good behavior and use positive incentives to encourage good choices. I need to know you see her as a child who is willing and able to learn — if she is given the right supports to do so.

I’m building this child up to face challenges, meet expectations and feel confident enough to take chances. I’m fostering her loving and accepting nature. I give her hugs, dry her tears of frustration and encourage her to try again. I nurture her spirit.

Dear Teacher, we both have important jobs to do here. My actions and thoughts will always be guided by what I feel is in Phoenix’s best interests.

Johanna Hirons's daughter

Follow this journey on Celebrating Phoenix.

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When We Encountered a Teacher Who Didn't Want to Teach Our Child

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As a special needs parent, you tend to research a lot. I’ll let you in on a secret: I love to read and I adore researching. I love to learn and expand my knowledge. Over the last few years, I have read thousands of articles all devoted to the subject of inclusion. Many of them have been absolute tear-jerking articles, full of love and happiness. Some of them absolute horror stories where children with additional needs have been victimized, cruelly treated and scapegoated.

For the last few years we’ve chosen our educational establishments well for our daughter, Evie (pats self on back). We have never truly encountered anyone in the system who just doesn’t “get it.” We’ve had brushes with haphazard professionals who forget things or don’t know what they’re doing. They’ve irritated and annoyed, but ultimately issues were resolved or managed.

Then over the last few weeks, we have encountered someone who clearly has no clue what inclusion actually means.

Perhaps I am naive, but I have always assumed that teachers teach because they love education; they love to see their students learn, regardless of ability.

I thought it would be accepted that some children are academic, others not. Some fantastic at math, others English. Some awesome at practical things, but not everyone. Some learn through fun.

I didn’t realize there were teachers out there who just don’t understand this. That they expect there to be one way to learn and that’s it.

You see, I thought the barriers were broken down. I thought that people would understand that it doesn’t matter what Evie achieves, as long as she tries her best and has fun in doing so. I thought the principle of inclusion is so fundamental to the very bones of our society, that the job was done.

I clearly was wrong.

When someone so obviously does not want to teach your child, it hurts.

When someone purposely puts the most ridiculous of barriers in your path to try to prevent inclusion, it becomes infuriating.

When you’re criticized by them for telephoning them to talk about Evie as a potential student, yet their letter invited you to do just that.

When that person tries to blame you for their not wanting to teach your child, that’s wrong and enough to make me scream.

Once again I am left thinking, “Is it me? What did I do? How could I have handled it differently?”

I tried to explain Evie’s little nuances. The way that she learns. What her strengths are. Why she struggles. How to help her. Why it doesn’t really matter if she achieves or not, as long as she has a chance.

And then as clear as day, I see it.

I say –

“What are you scared of?”

The denial.

I say –

“I don’t think you’re the right person to teach Evie. We’d better leave it here.”

Yet they don’t let it go. They don’t see they are the ones who are wrong.

Why is it so hard for people like this to understand?

Our children are our most precious things. We should only have the very best teaching them. Those who are genuinely interested in them. I do not want anyone near my children who doesn’t understand this. Regardless of the individual needs of my children, I want them to be taught by those who care more about them as a whole person than as an academic problem.

Inclusion matters.

It matters to the child.

It matters to their contemporaries.

It matters to the child’s whole family. It matters to the whole basis of our society.

Shame on you, should you ever read this. Shame on you.

(Please note this is not directly related to Evie’s schools who have always been fabulously inclusive.)

Follow this journey on It’s All About Evie.

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To the Mom Grieving Over a Down Syndrome Diagnosis

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One of the greatest privileges I have in writing is helping mothers who have just received a Down syndrome diagnosis for their child. To the moms and dads who are sad or grieving, here’s what I want you to know.

Dear Mom,

I too listened to those five soul-wrenching words, “Your baby has Down syndrome.” I sat on the same hard doctor’s office bed, surrounded by white walls and fluorescent lights that all seemed to spin around me.

I also walked those tear-stained steps back to the car, amazed I had enough strength to turn on the ignition.

Like you, I sat behind the steering wheel. I watched happy kids whiz by on scooters, their laughter bringing more tears, wondering if my child would ever have friends.

As you are doing now, I lay in bed. The emotional exhaustion made falling asleep easy. But waking up. Waking up and realizing it wasn’t a dream. The nightmare was my life.

I stood at the bathroom sink. I questioned whether my eyes would ever not be swollen. I stared at the bottle of prenatal vitamins you’re staring at now and I speculated if there was any point in taking them.

I watched my toddler the way you are watching your toddler today. Her joy suddenly brought me profound sadness. I feared what having a sibling with special needs would do to her. I also slipped up by crying in front of that sweet baby, starting a chorus of tears.

I prayed your prayers, asking God what I did to deserve this pain, asking Him why my child has to suffer.

But I have also been to places you cannot see yet.

I lay in a hospital bed. I gazed at my baby with almond-shaped eyes as he stared into my soul, feeling waves of peace wash over me for the first time in months.

I rocked in his empty nursery, waiting for him to come home from the NICU, feeling hollow without him.

I heard him laugh for the first time, a sound so joyful it forever zapped any last feelings of grief.

I held my husband’s hand as a surgeon cut open our son’s heart, wondering how I could possibly go on if anything were to happen to him.

I am watching him fight to achieve every milestone, renewing my own strength that seemed to be lost for a time.

I have fallen so deeply in love with this child that I can’t imagine him any other way.

It’s OK to grieve. But know your grief cannot understand what has yet to come.

Yes, there will be challenges. But like anything in life, every step you take prepares you for the next.

Your child is not ill because of Down syndrome. All is not lost because of Down syndrome.

In fact, Down syndrome can help heal. Down syndrome can help you find yourself. Down syndrome can add layers of meaning to your life you never imagined.

So, grieve. Grieve if you need to, but don’t stay there too long. Don’t let your grief steal the joy that’s coming.

Nothing is being taken away from you. You are instead getting more than you could have ever imagined.

Dear mom, know this: Your life is not over. A new life has just begun.

Follow this journey on News Anchor to Homemaker.

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To My Wife on the Day Our Daughter With Down Syndrome Was Born

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Dear Kerry,

Twenty-six years ago, we brought a child into this world who made us cry and fear for everything: Her future, our future, the lives of everyone we knew well and held dear. We didn’t know it then, because no one does, but that day birthed a new us, and everything we could ever have possibly hoped for.

Jillian Phillips Daugherty checked in on October 17, 1989 — the day of the San Francisco earthquake, for those hunting metaphors. She weighed 6 pounds, 11 ounces and was rosy-healthy upon arrival. Unlike her quiet, curious brother who preceded her by three years, Jillian greeted the world wailing and pumping her fist.

She had a big, round face and eyes like almond slivers. And peculiar horizontal lines that ran the breadth of her tiny hands. “Simian creases on the palms,’’ someone had written on the medical chart hanging from the foot of your hospital bed. Jillian’s pinkie fingers curled inward.

Woman holding a baby.

You didn’t notice that then. You were glowing. You’ve never looked more beautiful than on our wedding day, unless it was on the days you gave birth to our children.

It was a few hours until you learned Jillian had Down syndrome. A doctor who thought someone had told you dropped it into casual conversation, along with a reference to Jillian’s “floppy’’ muscle tone. I had gone home, to bring our son, Kelly, back to the hospital to meet his little sister. You called me.

“The doctors think Jillian has Down syndrome,’’ you said.

It was the worst moment of our married lives. 

You handled it better than I did. While I busied myself cursing God and beseeching Him to spare Jillian and take me, you didn’t even cry. You didn’t want to upset Kelly. Or your parents, who arrived late that first morning. I can’t imagine the strength it took to do that. Or the compassion for others.

The details of those first 24 hours remain clear: the phone calls we made to my family, the good face we wore for Kelly, the complete and utter wish that the day would go away and come back perfect.

“What are we going to do?’’ I asked. You had no answer. Not on that first day.

That was the last bad day, thanks to you. Your will saved us. It set the tone, then and now. When the well-meaning nurses and counselors arrived bearing information detailing all that Jillian likely wouldn’t do, you were the one to throw it in the trash. Literature warning us of Jillian’s potential health issues found the same abyss.

“We wouldn’t allow anyone to define Kelly,’’ you’ve recalled a million times since that day. “Why would we allow it for Jillian?’’

We have operated on that basis forever. Whether it was school administrators wanting to keep Jillian from regular-ed classrooms or the general public assuming Jillian couldn’t achieve like a typical kid, it was your palm — sometimes gentle, others forceful, always persistent — in the small of perception’s back. Nudging.

We might have developed together our guiding mantras — Expect Don’t Accept; See Jillian, Don’t Look at Her; Live in the Moment – but you were the one who put them into play, every day. Jillian would not be Jillian without you.

The first day of Jillian’s life was unlike any other. We allowed ourselves to grieve and process. At about 2 in the morning, I heard you crying softly. “Come on,’’ I said.

At 2 a.m., a hospital ward comes with its own contradictions. Hopeful and hopeless, peaceful and dreadful, all at once. I didn’t know what we were going to do tomorrow or the rest of our lives with Jillian. I only knew what we would do that moment, and that was walk down the hall to the NICU and ask to hold our child.

Jillian was wrapped deeply in a pink blanket. Someone had attached a pink bow to the wisps of her brown hair. I handed her to you. “It’s going to be OK,’’ I said. Whether I believed that or not didn’t matter. “Our little girl is going to be all right.’’

Mother posing with her daughter, who has Down syndrome.

Twenty-six years later, Jillian is married and living on her own. She works full-time. She has taught us more about ourselves and what matters in the world than we could ever have imagined. She is the best person we know.

You got her to this place, Kerry. You took her to the therapies, you studied the law that gave backbone to our education argument. You scouted the colleges. You planned the wedding. More than that, your DNA (equal parts determination, wisdom and compassion) found its way into Jillian. She is you. Thusly fortified, she has always been able to meet the standards you set, 26 years ago.

That first day gave life to a fine human being, but also to the notion that everyone should have the right to define him or herself. Happy 26th, Jillian. Happy day, again, Kerry. You rock.

Paul Daugherty is the author of “An Uncomplicated Life,” a memoir of raising Jillian. It’s available on Amazon.com and on Paul’s website, uncomplicated.life.

The Mighty is asking the following: Write a love letter to someone special in your life. What do you wish he or she knew? How has he or she made a difference? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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A Heartbreaking Loss Inspired This Photo Series of Kids With Down Syndrome

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Photographer Julie Willson has wanted to do a portrait series of children with Down syndrome ever since her sister Dina passed away four years ago.

Dina had Down syndrome; she died from heart failure at the age of 35. Doctors didn’t expect her to live past the age of 7, and Willson wrote on her blog that the uncertainty about Dina’s life was a “literal roller coaster for my parents.”

Julie Willlson and her husband on their wedding day with her sister, Dina. Dina sang at the ceremony.
Julie Willlson and her husband on their wedding day with her sister, Dina. Dina sang at the ceremony.

On Oct. 11, Willson used her photography idea to honor her sister’s life.

Willson, who also teaches kindergarten full-time in Egg Harbor Township, New Jersey, first put out a casting call on Facebook. She told local news site Shore News Today that the response overwhelmed her. Willson teamed up with 11 families for the shoot, and she wrote on her blog that the memories of her sister came flooding back, as well as some tears.

“Some of the kids were happy as ever, some overwhelmed, some naughty and some stubborn,” she wrote. “These are all the adjectives that I think of when I think of my sister… There were a few times that I looked over to see my mom with tears in her eyes and a smile on her face as she reminisced of my sister being that small.”

Girl wearing white dress sitting on chair outside
Photo courtesy of Julie Willson / JuleD Photography
Baby wearing bow tie and suspenders sitting in chair outside
Photo courtesy of Julie Willson / JuleD Photography

Willson says Dina was her hero.

“Dina completely inspired my photo shoot,” Willson told The Mighty in an email. “Because of her and because of the joy she brought to my life, I thought doing the photo shoot for Down syndrome awareness month would bring me the same joy. But in all honesty, this shoot was more amazing than I could have ever dreamed.”

Children with Down syndrome sitting on blanket in a park
Photo courtesy of Julie Willson / JuleD Photography
Baby wearing bow tie and suspenders sitting on a chair in a park
Photo courtesy of Julie Willson / JuleD Photography

Girl wearing white dress sitting in a chair in a park

Willson didn’t cry at the shoot, but she admitted that she’s cried every day since. She knows Dina would love the photo series, and she’s certainly thought about how her sister might have reacted to the photos if she was still alive.

“She would have been sitting here with the biggest smile on her face and giggling non stop,” Willson told The Mighty. “As I’m writing this, I can actually hear her giggle and the picture of her in my head could not be any more clear… She would have been so proud of me.”

Baby with a bow sitting in chair in a park
Photo courtesy of Julie Willson / JuleD Photography
Boy sitting in chair in a park
Photo courtesy of Julie Willson / JuleD Photography
Girl sitting in chair in a park
Photo courtesy of Julie Willson / JuleD Photography
Boy sitting on a chair in a park
Photo courtesy of Julie Willson / JuleD Photography
Baby girl sitting on a chair in a park
Photo courtesy of Julie Willson / JuleD Photography
Baby wearing bow tie and suspenders sitting on a chair in a park
Photo courtesy of Julie Willson / JuleD Photography

For more of Julie Willson’s photography, be sure to check out her Facebook page.

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