The Day a Stranger Recognized My Son Has Down Syndrome

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The day came, the one I wondered about for quite some time, the day a stranger recognized the Down Syndrome traits in my child’s perfect little face, and she approached me.

It was like any other Costco trip before, except this time I only had two of my six children with me (this is rare). We were perusing the aisles before heading for my 11-year-old’s favorite part, the samples. As we wheeled past the cheese and crackers we paused and she caught my eye. Everyone always comments on my little one’s hair; I must say Cedar has some awesome locks. This was not unusual, but once the woman commented on his hair and made a bit of small talk about how old he was, she paused.  She just kept looking at him and I knew something was coming. Her hand lingered on his bare little foot just lighting on his big toe.

This, I might add, is one of those defining moments.  I have had them before, and I have failed. Like the time I missed a connection because I just didn’t want to talk about Down Syndrome. I have wondered, sometimes, if a stranger will catch me on a bad day and they’ll say something rude, or just ignorant.  Another blogger, Erin, at the Lucky Wells, wrote an entire post about just this thing and I read it shaking my head all too knowingly that the day would come.

A mom kissing her baby boy with Down syndrome, he is wearing a stripped red and white onsie.

The funny thing is, sometimes I don’t see Down Syndrome. I mean at certain angles in photos I see the textbook physical traits that my Cedar possesses, but overall, he’s just my sweet little babe and though I know it is a part of him, it isn’t the main thing I think about or see anymore. As a new mom of a child with Down syndrome, I sometimes wonder if people see it yet when they comment on his hair or something about him.

 

Time stood still for just a moment and when it did, I breathed and decided this could turn out to be an educational moment. But then she smiled and asked if we had chatted before. I didn’t remember ever seeing this woman before in my life so I smiled back and said I didn’t think so. She went on to tell me that she had a grandbaby just about the same age as my Cedar. Then she said, “My grandbaby is a twin, and one twin has Down Syndrome.” I was no longer tense, the ease that washed over me was likened to a wave leaving me, feeling refreshed and rejuvenated. I quickly blurted out, “My son has Down syndrome, too!” She smiled again and told me he was beautiful, it melted my heart.

So it happened, the physical traits that allow others to see that he indeed has something a little bit extra were visible to a complete stranger, but it led to the sweetest exchange. I love that this is the first experience I have had in public by a total stranger acknowledging my son’s extra chromosome. It was such a positive exchange and the woman’s eyes lit up when talking of her granddaughter. It was very special to make a connection like that.

I went home that day feeling excited, feeling like I no longer had to worry about the first time someone in public acknowledged my son has Down syndrome, because it had already happened and it was perfect. No ignorant comments this day, no grace-filled smile as I explained what Down syndrome is. Nope, just a sweet exchange between two women who both love someone with a little something extra.

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Children With Disabilities Don't Make Parents 'Special'

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“God gives ‘special kids’ to ‘special parents.’” You’ve probably heard the statement. You may have even said it yourself. It’s one that is pretty common. I don’t know if I’ve ever actually verbalized it myself, but I did assume it was true once upon a time. However, I now see it is simply not true.

I understand people mean well when they say it. I’ve done my best to be gracious and thankful to those who have said it to me since my son’s birth. I understand it is intended to be a compliment of sorts. People are trying to be encouraging. But I don’t think it’s particularly helpful for anyone.

My wife and I will be the first to admit we are not part of some exceptional brand of humanity. We get stressed out about caring for our little guy sometimes. We get tired. We become impatient. I can assure you, we are just like any other parents.

Sure, sometimes the term “special needs” is used because some needs are not the same as the needs of typical children. Our son currently sees four different therapists each week. He is 16 months old and just last week sat up unassisted for the first time (and we celebrated that accomplishment big time). That milestone came after many months of working with a therapist. He is still learning to feed himself. He does not crawl quite yet. I would be lying if I said all of this is not overwhelming at times.

And I suppose some people watching us see how much we love our son, and how much we seek the best care for him. They may take notice of how much time and effort we invest into seeing him succeed. Their observations may lead them to view us as truly “special” indeed. The problem is, if you removed from the equation that our son has Down syndrome and were looking at the parents of a typical baby, you would absolutely expect to see people who love their child, seek that child’s best care, and who put time and effort into seeing that child succeed. And if parents of that typical child did not exhibit those characteristics, you might view them as bad, selfish parents.

So then, what makes us so “special?”

We’re just doing what all parents naturally do. When you meet your child, you fall in love. And it’s the unconditional kind of love. When you fall in love with your child, you do what you must to take care of them. Some things are easier than others, but you endure because of the one for whom you are doing those things. It doesn’t make you “special,” it makes you a parent. It’s a job anyone can do regardless of what life with our little ones may look like. Kids with disabilities are just like kids without them; little humans who will be naturally loved by their parents. And when those parents fall in love, they step up to do the things the little one will need for them to do.

Anyone can be a parent to a child with disabilities. They only need to have love in their hearts.

I see this cliché as dangerous because it leads not so “special” people to think they are inadequate to care for their “special” little ones. Believe me, you can do it.

If you just found out your baby will have a disability, don’t assume you can’t take care of them. Don’t be scared. Don’t think for a minute you won’t like being their parent. I can assure you that you will love that child more than you ever imagined possible. No one is better equipped to nurture that baby than you, because no one will love that baby as much as you will.

God doesn’t give “special” children to “special” parents. I believe He gives children (regardless of their needs) to imperfect, ill-equipped people who slowly learn how to apply their love to the raising of children.

So please don’t call me “special,” because I don’t call you that either. Neither of us are.

We are parents. A “special” job, to be sure. But a job for ordinary people nonetheless.

Follow this journey on Adam’s Notepad.

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Dear Rep. Cathy McMorris Rodgers: Medicaid Cuts Would Hurt Our Sons

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Dear Rep. Rodgers,

Both of our first born sons have Down syndrome. We are both proud members of the disability community, and advocate tirelessly for our sons.

 Senator Cathy McMorris Rodgers with her son, Cole
Rep. Cathy McMorris Rodgers with her son, Cole.

I agreed with you wholeheartedly when you argued for fewer barriers to employment and independent living for people with cognitive disabilities. In 2011, you co-authored a bipartisan op-ed piece in which you argued “If Medicaid cuts are not done in a thoughtful manner, they will have disastrous consequences and will lead to systemic civil rights violations.”

So why did you vote for the American Health Care Act, which will cut $880 billion dollars from Medicaid? 

Per capita based cuts will have disastrous consequences for both our sons. By shifting the cost to states, they will be forced to cut optional programs our sons use, to instead pay for mandatory health services. Most Americans don’t realize that Medicaid helps support our most vulnerable citizens to be more self-reliant and keeps them out of institutions.

You did in fact receive the most campaign contributions from insurance and pharmaceutical health companies. So, when you say you support AHCA because of your son, I have to wonder if that’s really true. Our young sons depend on Medicaid in public school for therapies and special bus services. When they become adults, Medicaid will pay for job training, transportation to work, and independent living supports.

Our families are lucky! We both have really good health insurance. 

My husband is active duty military and we have absolutely no complaints about our healthcare. We’ve never been denied any specialized care for Troy. I’m sure you could say the same about the outstanding insurance you receive as Congresswoman.

But our private insurance won’t pay for the services I listed above.

Courtney Hansen with her son.
Courtney Hansen with her son.

Unless you’re amongst the most wealthy citizens of our country, there is no way families will be able to cover long-term services like job training, transportation to work, and independent living supports. Likely, I will have to stay at home and support my son myself, losing valuable income for our family.

Thousands of disability advocates around the nation stood opposed to the Medicaid cuts you support. Not one Down syndrome advocacy organization actively supports the AHCA as it stands. 

Here’s the list of disability organizations that have rallied on Capitol Hill against those cuts:
Consortium for Citizens with Disabilities CCD
American Association on Health and Disability
American Association of People with Disabilities
ACLU Nationwide
AFSCME (American Federation of State, County and Municipal Employees)
ANCOR American Network of Community Options and Resources
The Autistic Self Advocacy Network
APSE
The Arc of the United States
Association of University Centers on Disabilities
The Bazelon Center for Mental Health Law
Brain Injury Association of America
The Collaboration to Promote Self Determination
Center for American Progress
Center for Law and Social Policy
Center for Public Representation
Chronic Illness and Disability Partnership (Harvard Law School Center for Health Law and Policy Innovation)
Community Catalyst
Council for Exceptional Children (International Headquarters)
Human Rights Campaign
Justice In Aging
LeadingAge
Lutheran Services in America Disability Network
Center for Medicare Advocacy, Inc.
Medicare Rights Center
NASTAD
NAMI
National Council on Independent Living
The National Disability Rights Network
National Down Syndrome Congress
National Health Law Program (NHeLP)
Center for Popular Democracy
RESULTS
SEIU
TASH
United Cerebral Palsy

Lastly, Rep. Rodgers, I write to you wondering what I’m supposed to do now. I meet with my own representative, Ohio Senator Rob Portman, on June 20 to tell him my son’s story before he votes on the bill in the Senate. How do I tell him to oppose disastrous cuts to Medicaid when his own colleague in Congress and a mom of a son with a disability thinks they’re OK?

You’ve called for modernizing Medicaid to ensure more in-home and community based supports, versus the institutionalization of our loved ones. But there’s no provisions for this type of reform in AHCA. Disastrous cuts with no explanation as to how states should reform Medicaid is reckless and unconscionable. Our sons deserve better!

Sincerely,

Courtney
Fellow Disability Advocate

This story first appeared on Courtney’s blog. Follow Courtney’s journey of advocacy for her son who has Down syndrome at www.inclusionevolution.com 

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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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Thinkstock image by ipopba

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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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