Troy on the ballfield.

How My Twins' T-Ball Team Learned About Inclusion

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Like many 4-year-olds, my twin boys, Hunter and Troy, love baseball! But when it came time to sign them up for t-ball, I couldn’t help but be anxious.
Inclusion Evolution.
Typically, parents wouldn’t bat an eye at signing their twin boys up for the same t-ball team, but our situation is not so typical. Troy has Down syndrome, and I wasn’t sure how he would be received. Should I call and tell the coach that one of my boys has a cognitive disability? During the first practice, should I describe Troy’s low tone and how it may impact his ability to keep up? During the games, should I apologize for my son’s performance?

In the end, I didn’t say anything.

Troy on the ballfield.
Troy on the ballfield.

We play backyard baseball all the time. Troy is as good, if not better, than his typical twin brother at hitting, throwing, and catching the ball, which is to say they both suck as much as any 4-year-old who has never played. I hoped his team would accept him as any other first-time player.

We showed up to the first practice, and I could tell Troy was really nervous. Even though he’s as good as any other kid his age, he hates crowds. I hear about other kids with Down syndrome loving the spotlight. Troy is the opposite. If you laugh or cheer at his successes, he shuts down. I’m not sure if he thinks people are laughing at him, or if it’s too much sensory overload.

His seemingly lack of interest in the game was predictable, but still bummed me out. I wanted his team to see the enthusiastic ball player I watch in our backyard. I did mention to his coach that Troy has Down syndrome, and he may or may not decide to play. “That’s OK, right?” I asked with bated breath.

Coach Kyle, a laid-back father of two, said “This is my first time coaching. I think we’re all nervous. Let’s give him some time to get used to his team and the game.”

This is inclusion at its finest, and Coach Kyle seemed to come by it naturally. There was no hesitation to include Troy. Just an open-mind, and support if needed.

Troy at the base.
Troy at the base.

I wish I could say the team’s acceptance of Troy made his apprehension to play go away. It didn’t. He practiced with the team, he even played the field a few innings each game, but when it came time to hit the ball stage fright took over.

It took five games for Troy to finally hit the ball. But when he did, you could see the pride and pure happiness in his face! You could see the excitement in his teammates’ and their parents’ faces! They were genuinely excited to have Troy as part of the team, and more importantly see him succeed.

Troy at bat.
Troy at bat.

One particular player, 5-year-old Michael, always made a point to talk to Troy during the games he didn’t play. When Troy played his first full game, you could see the impact it had on Michael. He was so proud of his friend.

Although most of the kids on Troy’s team are too young to understand Troy’s difference, there’s still an important lesson to be learned by his presence. I know these sports encounters will become less as Troy gets older. We expect that Troy will play on typical sports teams, as well as in the Special Olympics. But these early encounters can change perceptions of individuals with Down syndrome, and open doors for Troy later. His teammates will one day be employers, teachers, or friends who will remember that Troy is more alike than different.

Follow Troy’s journey of inclusion at www.inclusionevolution.com.

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I'm Not Sorry My Sister Has Down Syndrome

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“I’m sorry.”

I can vividly recall the exact moment I first heard those two little words in a brand new context.

They caught me completely off guard and left me confused. Those two little words momentarily stalled my train of thought and prevented me from uttering a coherent response.

From conversations I’ve had with many parents and siblings of individuals with disabilities, I realize I’m not alone in remembering this encounter in striking detail. It was a moment I’ll never forget.

In all previous situations, those two little words had demonstrated empathy, concern, and genuine care.

However, in this context, those two little words didn’t seem appropriate at all. Instead, “I’m sorry” suddenly became a phrase that made me realize how truly blessed I was.

Sitting with my steaming hot cup of coffee at a small local shop, I was waiting for a friend. At the table next to me, a younger, professionally dressed gentleman sat with his laptop out, busy working.

I can’t remember how we began chatting or exactly what questions were asked, but like I often do when talking with complete strangers, I remember sharing something about my younger sister, Sarah. It may have been a comment about how inviting and caring her demeanor is. Or it could’ve been a story about how she’s able to bring a smile to the face of anyone who encounters her.

Whatever I said, I know it had to do with how Sarah has completely changed the trajectory of my life, and my family members’ lives — for the better.

I forget what the gentleman asked me, exactly, but I began responding with, “Sarah has Down syndrome and –”

Immediately, the man’s eyes darted away from me and back to his laptop as he mumbled those two little words, “I’m sorry.”

Sometime after this chance encounter at the coffee shop, I remember reflecting on how that conversation made me feel.

I was never angry at the talkative and friendly stranger. He hadn’t intended to hurt my feelings or to pass judgement on me or my family. He was simply at a loss for words and did his best to say what he thought was appropriate given the situation. He was just unaware.

That day in the coffee shop, I was glad my friend was running a few minutes late because it gave me time to briefly share with this complete stranger how truly blessed I was by having Sarah in my life.

What did I enjoy most about this chance encounter? That I could offer a new and positive perspective to a total stranger.

Who knows who this gentleman has come into contact with since our conversation. Does he see individuals with disabilities any differently now? Maybe he chooses to extend a kind smile and a warm, “Hello there” to someone who he wouldn’t have in the past.

For me, this experience opened my eyes to the reality that not everyone shares my optimistic perspective on having a sibling with a disability. Sarah is truly a blessing in my life, personally, and she is the inspiration for what I do professionally. But other people have different perspectives, which makes it all the more important that I keep telling about Sarah and sharing how everyone has the ability to have an impact in the lives of others.

How are you raising awareness, promoting acceptance and changing perspectives?

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A version of this post appeared on Enable

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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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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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