Waiting in line.

How My Daughter With Down Syndrome Breaks Down Barriers Without Words

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Turned out nice again.

If there’s one topic of conversation we Brits do well, it’s the weather. I sometimes wonder what on earth we would talk about if our weather was always the same. Without it, I fear we would never talk to anyone ever again!

Picture the scene: a busy post office in a suburban town in the U.K. A queue (line.) Oh we do those well too, us Brits. Queues. Usually in silence and often impatiently, avoiding eye contact and hoping no one invades our personal space. These are unspoken rules of being British, and if you are a visitor to these shores or have made your home here, you will have possibly been on the receiving end of one of our glares or tuts of disapproval if you dared to get any of this wrong. Please accept our apologies if this has happened to you. We don’t mean to be so rude. At least I don’t think so.

But you are not alone. My daughter Hazel, who has Down syndrome, hasn’t learned those rules either. And I hope in some ways she never does.

As we took our place in the queue, me standing and Hazel in her wheelchair with shiny bright pink wheels, waiting our turn, she pretty much broke every one of them. Firstly, she cheered as we went in, hands waving frantically. Everyone turned and stared at us.

Shh, they said, not actually saying a word.

Then she laughed. Giggled. At what, I have no idea. Maybe the fact that there were lots of people all standing there saying nothing at all was very funny. It is,
if you stop and think about it.

The Post Master definitely smiled; I caught his eye from my place in the queue.

“Cashier number two please.” Two more still in front.

Then there was a commotion behind us, the whir of an electric wheelchair. Not pink and pretty, but cumbersome and clunky. The silent, staring, glaring faces turned again, then turned quickly back for fear of making eye contact with its occupant. He held a letter in one contorted hand, control stick in the other.

Fear. More silence, if there is such a thing as more silence when you already have silence. Perhaps relief that they were ahead and not behind.

I moved my daughter’s pink wheels to make room in the cramped waiting area for his black ones. As I did, she broke another rule. Or was it a barrier? She reached out her hand and placed it on his knee. And in a second the rule was broken, the barrier lifted.

“Hello, how are you?” he said, his voice as shaky as his hands.

She didn’t answer. She can’t. Yet. But she spoke louder and more clearly than all the articulate people in the post office put together.

The Post Master smiled. So did the other customers. One stepped forward to help our new friend put his letter on the counter. Another turned and spoke to Hazel, admiring her pink wheels.

Silence broken. Lines of communication opened.

As we left the post office, our electric-powered friend was already halfway up the road. There was no stopping him. Though I’m sure there are plenty more barriers he will have to face. As will we, but at least for now, in her 5-year-old
world, Hazel has no idea those barriers even exist.

Turned out nice again.

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Thinkstock photo by Ryan McVay.

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The Storm in My Mind as I Learn to Parent My Daughter With Down Syndrome

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Some days are great. Others, not so much. Those are the days I wake up and feel instantly swallowed up in my own personal tornado.

  • dishes, therapy, work, milk, appointments
  • laundry, positioning, gym, diapers
  • fear, schedules, visitors
  • questions, reflux
  • more therapy
  • colic

Some days I think therapy isn’t working or that I am not doing enough. I feel impatient in wanting Kara to hit major milestones. I question every little thing that could be holding her back. Some days I waste so much brainpower on these unknowns and these pointless worries.

Some days, I notice I am neglecting myself or the house. That we’re out of clean burp cloths or warm pajamas. I notice I haven’t been to the gym in a week and the polish on my nails has chipped into odd patterns at the tips of my fingers. The dust on the TV is an inch thick and the dog prints on the sliding backdoor make it impossible to see through.

All I hear are little raindrops all around me singing, “fail, fail, fail, fail, fail.

I feel there is no crawling out of this storm in my mind. I have no choice but to hold on tight until it passes. Afterwards, I may be left with the rubble, but I also have a fresh perspective.

I believe there is nothing that a good night’s sleep, a little coffee and a deep breath can’t cure. Suddenly, I realize I have survived the storm in my mind and the sun looks brighter than ever! After weeks of practicing, Kara starts to coo back at me and holds her head up longer. Then she naps just long enough for me to run the dishwasher and spray some Windex on that back door. I make myself a priority. I eat a healthy lunch and hit the gym while Jacob watches the baby. When I get home, I take a  long, steamy, relaxing shower because I deserve it.

I know things will cycle back around and I will be hit with another mind tornado sooner rather than later. However, I know I can come out on the other side. Though things might get tough from time to time, I have learned it makes the good stuff that much better. Even with all of the stress, chaos, anxiety, and times of doubt, I wouldn’t have my life any other way. It’s all mine. I work hard for it.

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What's So Scary About Down Syndrome?

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Recently I read a story about a baby boy born in 1982, known to us only as Baby Doe. Interestingly, this baby who had no name quickly became the center of national debate over the value of human life.

In the court of public opinion, some found this newborn baby boy to be guilty of two grave offenses. First, he had Down syndrome. Somehow he had managed to breeze through pregnancy without being detected, thus taking away his parents’ ability to have an abortion. Second, he was born with a (surgically correctable) condition known as tracheoesophagael fistula. Yet while a nearby hospital and its medical team were ready and willing to perform surgery on him, Baby Doe’s parents chose instead to follow the archaic and biased advice of the mother’s obstetrician… and they did nothing.

This tragic story continued with the hospital fighting (and losing) for the chance to provide life-saving measures, many families coming forward with a desire to adopt Baby Doe, and a state child protective services investigation into the situation. In the end, medical pleas, legal processes and state intervention all failed Baby Doe. He lost his life just six days after birth because he was left alone with no sustenance. The cause of death was recorded as “chemical pneumonia, due to the regurgitation of his own stomach acid.”

While the story of Baby Doe’s life and death is, to many, heartbreaking and unimaginable, the reality of the injustices he faced are not all that uncommon. Though his story took place some 35 years ago, I’m afraid that in many ways, the suppression and annihilation of people with Down syndrome still persists even today. On the heels of reading Baby Doe’s story for the first time, I read another person’s story just a couple of days later. This mother’s story is the story of so many others… a prenatal suspicion or diagnosis of Down syndrome turned into pressure from one or more medical professionals to simply abort the baby and try again next time. It happens all the time (you can read many other mothers’ diagnosis stories here).

As I recall the many stories I’ve read or heard over the years, I can’t help but ask this question: What is the big deal about Down syndrome, anyway?

The prenatal threat against those with Down syndrome has never been greater as prenatal tests become more and more accurate. Furthermore, some medical and “ethical” scholars continue to argue not only for the abortion of fetuses suspected or diagnosed with Down syndrome prenatally, but for infanticide of those who receive a birth diagnosis. Yes, they are arguing for the legal right to kill babies born with Down syndrome, and other disabilities as well.

In many ways, these assaults are working, and the population of people with Down syndrome continues to decrease as the years go by. But why?

What’s so dangerous about Down syndrome?

The other day I was thinking out loud and questioning why our world seems so dead-set on eliminating people like our daughter. My husband listened to my rhetorical questions and offered his opinion: “Because it’s not easy. Parenting a child with Down syndrome takes a lot of work.” And while I wasn’t looking for an answer from him per se, I believe his answer exposed the truth about why some in our world want to wipe Down syndrome from our midst: fear.

Facing a reality of Down syndrome exposes our fears and forces us to recognize our vulnerabilities. We fear “hard,” so we run from it instead. We try to make it disappear. We fear Down syndrome will take away from our lives, destroy our normal, ruin our hopes and dreams. Fear drives this social war on Down syndrome, yet we fail to realize what we are trading our fears for in the process.

We are so busy running from pain, we forget the beauty that can come out of hardship. Nature reminds us of this truth, though. Even in the most barren desert, a flower still blooms. Even in a land devastated by volcanic activity, luscious vegetation will emerge once more. Beauty from ashes. Life from death.

What’s so dangerous about Down syndrome? I think we have it all wrong; we are fearing the wrong things.

I submit that the most dangerous threat Down syndrome poses to us as a society and as individuals is that it can enable us to become better people. Down syndrome threatens our devotion to self and reminds us that pursuit of personal pleasures leads to an empty life. A life well-lived is a life in which the needs of others are put before our own.

I will be the first to admit I grieved deeply over my daughter’s prenatal screening of Down syndrome. In fact, it was one of the darkest and most painful seasons of my life, and it led to an extremely difficult pregnancy, a nine-week stay in the hospital, and many days in my pregnancy of praying that the inevitable would not be true. At one time, I feared having a child with Down syndrome would mean the end of my world.

I don’t regret for one second the grief I felt and the heartache I have endured in different seasons of this surprising twist to our journey. We did not ask for Down syndrome, and the grief has been a normal process in unexpected and unanticipated life circumstances. But I also don’t believe the grief I have experienced in any way minimizes or takes away from the value of our daughter Alisa’s life. I will never accept that the detour Down syndrome brought to my original life plans would have justified killing Alisa, prenatally or just after birth.

Alisa has Down syndrome, but she is so much more than the many misconceptions and misled beliefs our world still holds about people with Down syndrome. She is not “a blob,” as the obstetrician of Baby Doe’s mom predicted he most certainly would be. She is not “an unbearable burden on the family and on society as a whole,” as is conjectured in this journal’s publication. She is not suffering, and she poses no threat to those who come into contact with her. But even if she was more medically fragile, even if she did require even more of my time, energy and sacrifice, I believe we should never compromise the value of human life for the sake of our own fears.

In the proverbial storms of our lives, if we trade our fears for comfort and pleasure, we lose out on the character, the strength, and the beauty that can emerge when a storm is weathered. After all, diamonds aren’t formed in easy conditions or safe environments. If we run from pain and numb our senses to the grief that accompanies “hard,” we miss opportunities to love and to give and to make this world a better place, even if it means making just one life better. Parenting a child with Down syndrome is not always easy, yes, but parenting any child is not always easy. Life is not easy!

Facing a reality of Down syndrome does not have to be the death sentence the world often tries to convince us it is. While Down syndrome reminds us that life does not always go according to our plans, it can also teach us that the real purpose of life is not in getting what we want but in emerging from the unexpected twists and turns of life as people of character, integrity, and strength. People with Down syndrome demonstrate to us that the pace of life does not have to be fast and furious. We do not have to look, behave, and achieve the way the world pressures us to. Human diversity in all of its many forms is a beautiful thing.

We fear the unknowns of Down syndrome, and we believe it is the person with Down syndrome who is somehow lacking, unworthy, too different to be given the same respect as other human beings. Yet I have found it is not my child with Down syndrome who has needed to change, but me. It is not my daughter who has Down syndrome who was lacking, but me.

What’s so dangerous about Down syndrome? When Down syndrome touches your life, you cannot remain the same person you once were. Yet if only we would all but walk into the “hard” and embrace the challenge, I believe we would find the change Down syndrome threatened to bring was, all along, something we shouldn’t have feared at all…

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I Believe I Was Meant to Be a Mom to My Daughter With Down Syndrome

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I’ve never known what I wanted to do with my life, what I was meant for, what kind of impact I could have on the world, if any, and who I wanted to be?

When you’re a kid, adults ask, “What do you want to be when you grow up?”

I have a vivid memory as a kid and my mom was driving me and my little brother somewhere, she told us, “You can be anything you want to be when you grow up.”

I looked out the window into the trees, “I want to be a deer.”

My brother followed suit and said, “I want to be a dragon.”

I wish I could go back and see my mom’s face at that moment.

Well, apparently I was meant for more than prancing through the forest and my brother never did develop fire-breathing skills.

In high school, we took those personality tests that are supposed to tell you what field is best to pursue after graduation. I remember that mine hit somewhere near the medical field, helping people in some way. I aced my Medical Terminology classes, but scraped by in Anatomy. I temporarily worked towards a degree in Radiology. I even looked into Dentistry and Massage Therapy at one point. I did all of this, even though I never felt like it was my calling. I eventually realized I am too absent-minded and riddled with anxiety to succeed in the medical field.

I felt lost, like I needed a plan. So, of course, I began to over-think everything.

Where am I heading?

I don’t cook.

I can’t paint.

I am a horrible driver.

I am not CEO material.

I don’t like talking to people.

I am not made for standing in front of a classroom.

Long story short, I ended up with a Bachelor’s in Business Administration and was lucky to snag some good jobs along the way (including my current remote position).

Now, here I am, in the midst of my life’s story. My path has led me here. All of the decisions I made landed me the job I was meant for all along: Motherhood.

This job puts all of my best skills to use:

I am bossy.

I am driven.

I am attentive.

I am protective.

I am structured.

I am passionate.

I am open-minded.

I am obsessively organized.

I am strong.

I am a mom. And I’m good at what I do.

Nay, I am great at what I do.

I am mom, but not just any mom. I am Kara’s mom.

This job description is longer and more complicated than I ever thought I could handle. Because of her I am a physical therapist, speech and language pathologist and occupational therapist all rolled into one. I am a baby-food chef. I am creative and artsy. I am a cautious driver. I am a leader and an advocate. I am a teacher.

Looking back, I realize there was no way to know where I was heading. There was no test to tell me that my best course in life was to be a mother. Not only that, but a mom to a child with Down syndrome.

I was meant for this life I’m living. I was made to be sitting here in front of my computer with views of my husband’s police car from my window. It is parked right next to the black mailbox with the big blue ribbon tied around it.

I sit here thinking about how beautiful this life is, even on the hard days. This job will evolve and I will change with it. Right now, it requires napping on the floor next to the baby swing and rinsing the squash from in-between my fingers. It’s about going to the gym when I can and realizing halfway through my workout that I have dried broccoli on my watch and/or spit up on my shoulder. It’s about feeling tipsy after half a glass of wine and getting a babysitter on a Friday night so I can enjoy a hot bath alone.

I sit here, writing about my daughter, our life and striving to help others through my words. I am finally right where I am needed and doing exactly what I was meant to do. Turns out, that high school test wasn’t so far off.

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When a Little Girl Made a Joke About Having 'Special Needs'

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Entering the world of Down syndrome has been extremely humbling. For me it’s been like leaving my house for the first time. I thought I had it all figured out. I knew every nook and cranny of the house, but just one step out the door changed my perspective. By the time I made it to the mailbox, I realized much had been happening right under my nose. I just never thought to peek out the windows before.

Reflecting on this is incredibly important to me. The person I once was is the type of person I’m trying to reach today. I am trying to reach the people who are well-intentioned and caring, yet unfamiliar with Down syndrome and people with disabilities.

There is so much to know about Down syndrome (not to mention other disabilities). I have learned something new every day since getting that call from our doctor saying our child had Down syndrome. There’s no time to slow down either. The world is changing and its changing fast.

When it comes to Kara’s disability, I’ve been told to disregard anything that is more than five years old because it is most likely outdated. Think of where we’ll be in another five years! The future for Kara is so limitless that I can’t possibly imagine what she is going to accomplish.

I believe in her with all of my heart.

That’s not to say I don’t have times of doubt. There are days when it is very hard to put one foot in front of the other, when Kara seems to regress and I can’t help but blame myself. I’m still human and sometimes succumb to pessimism.

I was at a friend’s house for a gathering and I toted Kara around because she didn’t want to be held by anyone else. It was hot. I was exhausted. She was feeling especially heavy. But, of course, I wore a smile to cover the frustration.

After mingling for a while, I eventually stepped aside to take a breath. Kara and I found ourselves next to the back door, feeling the cool and welcomed breeze come through the screen.

That’s when I faced my greatest fear for the very first time.

A young girl walked up to the screen door and tried to open it. I was watching her, thinking she looked uncannily like my sweet, younger cousin. She seemed like a good kid, a nice girl. Then she called out for help. The girl announced she had “special needs” because she couldn’t figure out how to open the door. She laughed as she said it and I lost my breath.

It was the most awful feeling. She was standing right next to me and Kara. I had no idea what to do.

I felt embarrassed, dumbfounded, completely caught off guard. My first reaction was to look around. Did anyone else realize that someone made fun of “special needs” in front of my baby? I fought off the urge to burst into tears.

It might seem silly to some because I’m sure this girl meant no harm. I’m sure she didn’t think twice about what she was saying. Regardless, this is what I heard when she said those words, “I’m so dumb, I’m incapable of figuring out this lock, just like a person with a disability.”

I stood in shock. What was I supposed to do? Do I call her out? Tell her, “Hey, my daughter here has ‘special needs.’ Don’t say that.”  Do I pull her mother aside and tell her she needs to have a talk with her kid?

Then I did the worst thing possible — I did nothing.

I was about to leave right then and there. I needed to be alone. I needed to sit down and think about this, about how I was feeling and how I’m supposed to react. My stomach was turning, but I toughed it out a little while until I finally excused myself and carried my sweet girl out to the car. I didn’t make it halfway before I felt the tears release. In that instant, all my pessimistic emotions melted away. As I strapped her in her car seat I looked directly in her blue eyes and told her, “You remember, you are smart and you are beautiful, and I love you so so so much.”

This experience is what fuels me to write about our lives. I wish I could keep Kara from hearing these things, but of course, that’s just not possible. Brace yourself for when I encounter something much harsher than a silly, indirect comment from a little girl. My inner “mama bear” grows fiercer each day.

Follow this journey at Baby Lemonade Blog

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How a Caring Dentist Helped My Daughter With Down Syndrome

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In my head, I imagine it’s like fingernails raked across a 90’s chalkboard, or a metal fork scraped across a plate. Either way, my daughter’s body language spoke fear.
The way her hands and face shook — extreme anxiety.

In the “typical” world, a trip to the dentist’s office would be a simple inconvenience. But not if you have a teen with sensory integration dysfunction.
Sensory integration involves the way a person receives input such as touch, sound, smell, and even movement and balance. If the brain has trouble interpreting this type of information, then one might have trouble with simple daily activities, such as eating or brushing teeth.

My daughter Tayler has a diagnosis of Down syndrome and is considered nonverbal.  She has had difficulty with sensory integration since birth, and her sensory-seeking behavior has sometimes been a struggle for her.

I had no idea that our dentist would know exactly how to help her.

Since Tayler was born, her sensory difficulties have included grinding her teeth when anxious, frequent body movements, aversion to hair washing, and most recently large crowds and noisy areas. I can see the pain and anguish on her face. Since she is unable to express her thoughts verbally, I use my mother’s intuition and her body language to make my best guess as to how she is feeling. I often see frustration mixed with pain. I hurt for her sometimes.

Today was an unforeseen struggle, but Dr. Ralph Nixon was prepared. I’m not sure what the scientific term was for his technique, but my guess is they didn’t teach it in dental school. As Tayler and I walked into the room, Tayler sat in an orange, metal chair. The room appeared like any other typical dentist office, full of tools and gadgets. Dr. Nixon, his nurses and I spoke quietly and discussed the possibility of panoramic x-rays. My decision was “No”, because it requires one to be completely still, and I knew Tayler already showed signs of feeling stressed.

After our discussion, I gently attempted to get Tayler to lie on the exam table. She refused.

I tried to persuade her, “OK Tayler — it’s your turn. It won’t take long,” I explained.
She pulled her arm away and dropped down to the floor. We have visited Dr. Nixon for years, but I guess today in teenage-fashion, she decided to exert her independence. I tried my best to pick her up, but at 100+ pounds, it was impossible for me. Dr. Nixon tried to assist, but Tayler refused again.

So like any sensitive, intelligent, empathetic human being, Dr. Nixon decided to track and adjust.

He walked over to Tayler and sat beside her on the cold ceramic floor to talk to her. He asked Tayler if she was OK, gave her several pats on the back, and explained that we needed to check her teeth.  He made multiple attempts to engage her, and make her smile and laugh. He seemed to sense her difficulty and fear of the exam, and gently praised both of us for her dental health.

“She has good dental hygiene. Do you help her?”

I answered, “Well, sometimes, because she hates brushing so much.”

Dr. Nixon then said, “That’s wonderful that you help her take such good care of her teeth. It shows.”

Once Dr. Nixon finished speaking, he sat in a random, nearby chair. He seemed to think for a while, then inquired, “Do you think I can examine her right here?”

I replied with an emphatic “Yes please!” He then gently rested her head on his knee. I remained seated in the floor holding Tayler’s hands. In an obviously uncomfortable position and with his nurse’s assistance, Dr. Nixon proceeded to give my daughter a dental exam.

I stared in disbelief and briefly zoned out, because my heart knew this world would be such a better place if more people and professionals were like him. We had both made attempts to change Tayler’s sensory response and her fearful reaction in that moment, but Dr. Nixon changed his response. He took the time to empathize, be in the moment, and simply care. I hope other professionals will learn to “think outside the box” and do the same.

After the exam was over and it was time to leave, Tayler effortlessly stood up and kissed Dr. Nixon on the cheek. She started to giggle. He hugged her.

No parent likes to see a child in pain. But today I felt content knowing there are truly good people and professionals who care about their patients, and are willing to go against the norm to help.

We need more professionals like him.

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