How My Son With Down Syndrome Pushes Me to Be 'That Mom'

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I’m becoming “that mom.” You know the one:

The one who honestly thinks her child with Down syndrome would be an asset, rather than a liability to your typical kid’s classroom.

Who thinks her son doesn’t have to “keep up” to be included.

The one who cares when you say “retarded,” even when you argue that you “didn’t mean your son.”

Who writes all those annoying political posts about how Medicaid cuts would impact individuals with Down syndrome and take disability rights back a generation.

The one who thinks inclusion for her son is the civil rights debate of our time.

Who shouts that separate is never equal to anyone who will listen.

How dare she! The audacity of it all!

The evolution to becoming “that mom” isn’t an easy one for me. I’ve had to adapt to my new environment. I used to be so easily swayed. First I was a journalist who always tried hard to be unbiased. Then I was a teacher who ran my classroom like a well-oiled machine, not thinking much about the absence of any kids with disabilities in my school.

But what I now realize is if I don’t stand for my son, who will?

Courtney's son in school.
Courtney’s son in school.

Our culture has yet to embrace full inclusion of children like mine. Sure there’s been good progress, but you know how I can tell we’re not there yet? I can tell when I take my twin sons (one typical, the other with Down syndrome) to school, and one can enter a regular kindergarten class no questions asked; while the other must fight to earn a spot in the same class.

Federal law protects my son from this culture of exclusion. IDEA says he deserves an individualized, free, and appropriate education in the least restrictive environment. Still, these laws are not enforced the same across our nation.

Federal courts have ruled “Inclusion is a right, not a special privilege for a select few” in Oberti v. Board of Education. Still my friends tell me how their kid is doing laundry and vacuuming in primary school, instead of learning to read next to their typical peers.

Courtney and her son outside their senator's office.
Courtney and her son outside their senator’s office.

So instead of just hoping my son learns next to his brother, I’m applying to the Special Education Advocate Training through the Council of Parent Attorneys and Advocates. I will be an expert in the laws that protect my son in school.

Not only do I post on Facebook about legislation that impacts my son, I attend the Buddy Walk on Washington to actually meet with my legislator and tell them my son’s story.

Instead of waiting until my son turns 21 years old to think about what job he might get, I’ve started a local communications workshop for adult self-advocates to learn about their successes and challenges in employment.

Obviously you don’t have to go this far to be “that mom.” I’ve seen moms feared, misunderstood, and even pitied for a lot less.

I surprise even myself with my moxie.

But I’ve also gained a new clarity of my life’s ambition. Because if I don’t stand as an advocate for my son now, how will he ever know how to advocate for himself in the future?

If I don’t stand for something, I’ll fall for anything.

This story was originally posted on Courtney’s blog, www.inclusionevolution.com. Visit to learn how you can advocate at the local, state, and national level for individuals with Down syndrome.

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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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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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