We whisper. We move to a more private room. We use vague terms. We are given privacy policy documents. We are assured that our feedback will be given anonymously. Because that is expected.

There is so much secrecy around disability.

It has become so normal to hide a mental disability, that it’s just assumed we won’t want anyone to know about our situation. It is just expected that we will want to keep this quiet.

I understand the need for it to some extent. I understand that it is meant to help us. But I think the secrecy that is designed to protect us is also creating, or at least perpetuating, the problems that we fear the most: discrimination and bullying.

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It is so rampant and accepted, that we are made to feel like we must hide from it. We are led to believe that this is the only way to protect our children from the haters and the bullies who might attack us if they knew. And so we do it.

We tell the autistic child not to flap or make his noises in public, so people won’t stare.  

We try to keep him quiet in a restaurant, so people won’t say something to us.  

We try to get him to dress like the other kids so that he won’t stand out at school by wearing his baggy sweatpants every day. 

We tell him to keep his hands out of his mouth or his fingers out of his hair, so that people don’t see his stimming behavior and think he is “weird.” 

But why?

Why should our child be made to act like someone he is not? Why should he have to work even harder to fit into somebody else’s standard of “normal”? Why are we to be punished because we have a child who is different?

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Why should we be the ones to hide? Why should we be the ones to feel ashamed?

Just so that the haters won’t have a target?

I think discrimination and bullying happen because of a lack of understanding, a lack of familiarity, and a lack of empathy. I think people fear (and sometimes lash out at) what they don’t understand. And by keeping disability in the closet, we are doing nothing to help people understand. We are doing nothing to demonstrate to them that even people with disabilities aren’t abnormal, they’re just different. We are not helping to create any familiarity or empathy. We aren’t educating them that differences are OK, that differences are what make us great. All we are doing is perpetuating the behavior that we fear.

I don’t want to do it anymore.

What if we refused to hide? What if instead, we were all out in the open? What if we refused to make our child fit their definition of “normal”?

What if all of the parents with special needs kids banded together and forced the world to look our children square in the face and accept them for the beautiful, unique, loving people that they are?

Imagine what might happen…

lisa marsh kids the mighty

A longer version of this post originally appeared on Another Normal Day.

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Dear Autism,

I will never forget the day we met. It will forever be burned into my memory. That was the day you almost took control of not only my son but my entire family. You almost had me, Autism. For an instant, I became victim to the fears that so often accompany you.

How could you possibly be knocking on my door? I’d done everything right. I never missed a prenatal exam. I ate right. I breastfed exclusively for an entire year. I was diligent with his doctor appointments. You must have had the wrong house. But you came anyway. And then you proceeded to subject me to endless nights full of guilt and unrest.

What had I done to cause this? This must be my fault. You filled my head with self-doubt and self-loathing. I started to grieve for the son I thought I’d lost to you. I often found myself feeling sad for my younger daughter, who became nearly invisible amongst the tantrums and therapies. I had a fear of what the future would hold for my precious son. Will he be independent? Will he attend college? Will he get married? Will he be bullied or labeled by a society who doesn’t understand him? Will I be capable of being the mother he needs me to be? Can I build him up when he feels different? Will I be able to show him what an amazing person he is? Will I have the tools to show him he is more than his diagnosis? Will I ever hear the words I so desperately long to hear, “I love you, Mommy?”

I have so many questions and so few answers. I still find myself going to those dark places from time to time. But from all those negative feelings, I’ve become a phoenix from the autism fire. I’ve become stronger than I ever thought possible. I can look at my beautiful baby boy and no longer see the face of autism. I see Tyler. I see a sweet, smiling little boy who is full of curiosity and energy.

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He’s my spectacular puzzle. All I want to do is keep that sweet smile on his face. I want to expose him to every experience I can that might be the key to opening something new and adventurous for him. He is my teacher. He is my gift from God. He has taught me how to see things from his perspective, and now, life is so much more colorful than I’ve ever seen it before. He’s taught me that everyone has a story, and sometimes people need more support and less judgment. He’s taught me to appreciate every milestone.

Because of you, Autism, I’ve met some of the most amazing people I’ve ever known. People I would probably never have met otherwise. We’ve been a support system for each other when you’ve tried to lock us up in your dark hole. Because of you, Autism, my family and marriage are stronger than ever. I’ve become an advocate and an encyclopedia, if you will, of information for families that unwillingly have you in their lives.

Autism, you almost had me. But the joke is on you, because we’re thriving.

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Eight-year-old Casey is in many ways like any other boy, especially when it comes to his passion for sports. But he has a problem that affects us all.

Casey is autistic. That isn’t the problem. 

Casey would be thrilled if he could swim in a relay race with his peers and feel the sense of camaraderie of a team. Autism isn’t standing in the way of this. Sure, it’s potentially a roadblock, but years of various therapies have given him the motor skills, coordination and focus to begin competing with his peers. That is, if he’d been able to start playing sports when they did, way back when they were 3 years old.

At this point, it doesn’t matter what sorts of laws exist to demand equal opportunity for kids with disabilities in school sports. Casey is so far behind typical kids in his access to athletics that he’s missed out on all of the developmental and social benefits he could have been gaining, and he won’t have a prayer of making any school team when they start in middle school.

This isn’t just a squandered opportunity for Casey. It’s a loss for the entire community.

I believe sports are important in our culture. Youth sports play a significant role in the community life of my neighborhood; it’s hard to stay in  the social loop if you don’t participate. Whether you believe that the increasingly ramped-up intensity and competition for young kids in sports are a good thing or not, we can all recognize that playing sports provides a host of benefits for our bodies and minds, from exercise to community engagement to the development of social skills, self-esteem, teamwork and leadership. Children like Casey often gain even more from sports, as they tend to be more deficient in the skills that sports enhances. As their peers grow stronger and more confident from their participation in sports, kids with autism can fall further behind, so the social and physical gaps between them and typical peers grow even wider. Their exclusion from community sports and the associated social activities that surround sports, sets the stage for further segregation and isolation.

This isn’t just damaging to the children who are left out. When typical children are denied exposure to children with differences, they lose the opportunity to learn important life lessons, like how to accept people who may not look or act like you do. These are harder concepts to teach when kids are older, after the clay has hardened and there has been little interaction.

And of course it’s not just the children with disabilities who become isolated. Their families grow increasingly separated from the community, with fewer common activities and occasions to interact.

In 2010, the U.S. Government Accountability Office released a report that found students with disabilities participated in sports “at consistently lower rates than students without disabilities.” Subsequently, the U.S. Department of Education issued a letter of guidance to school districts nationwide clarifying their obligations under federal civil rights law to guarantee students with disabilities equal rights to participate in school sports and other extracurricular activities in public schools.

Problem solved, right? Not exactly. The organizations and town-sponsored recreation leagues that run sports classes and teams for preschool and elementary school-aged children, where many children get their start, are not subject to these laws. So by the time Casey gets to middle school, when competitive teams begin, his typical peers will have hundreds of hours of sports training that he missed out on.

No one is asking community sports organizations to fundamentally alter the tenor of their teams to accommodate kids who might need a lot of special help getting out of the starting block.

But there’s a middle ground between political correctness run amok and total exclusivity.

Given the current reality, families of kids with autism are banding together to form their own teams. I’ve met some of these families and was so inspired by their determination that I began filming their experiences for a documentary film.

The Jersey Hammerheads swim team was formed by a family from Edison, New Jersey, that decided to create their own opportunities, and the result has been life-changing for everyone involved. Two boys on the team are now swimming with their local YMCA’s team, two more swim for their high school teams and one swims with an elite private swim club that boasts Rebecca Soni as an alumna. The experience is revelatory for both the children on the team, which includes Casey, and their parents.

“We didn’t realize how important sports could be in our son’s life,” one mother told me. “His capability and success have changed my whole outlook on what’s possible for his future.” She now believes that as a result of his success in sports, and especially swimming, college is within reach for her son. “If he can learn this, he can learn other things too.”

Homegrown teams like the Jersey Hammerheads and organizations like Special Olympics can serve as a springboard for inclusion of athletes with disabilities onto typical teams. They’re a great place to start for the child who needs to learn at his own pace in a supportive environment.

But that doesn’t mean there shouldn’t be more and earlier on-ramps to community teams for kids who require support to play with their typical peers or that the community should be exempt from creating alternate teams for kids who need their own space to learn. Families of kids with disabilities are already overwhelmed. They deserve a wider array of support, and it shouldn’t be left up to them to create sports teams from scratch.

Beyond the considerations of kids with special needs, typical children shouldn’t be denied the positive experience of interacting with their peers with disabilities through sports — especially when they’ll find that on the field, on the court or in the pool, they have more in common than not.

When every child is shown early on that inclusiveness is a paramount value to strive for, we all win.

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Dear Bipolar Disorder,

I filled up a whole journal dedicated just to you, BPD.  My cursive letters swirling around; every word different, but every meaning the same. In high school, you decided to keep me low, keep me worthless, which I told my journal.

“I’m so stupid, I deserve to die. I’m so worthless, life is wasted on me. I’m such a burden, why does anyone claim to love me? I’m so ugly, how do people not vomit after looking at me?”

Always at my side like a shadow, your pitch-black fingers wrapped around every thought I had, and even the purest thoughts became stained.

My family surely thought you were going to be the death of me. Senior year, I became friends with the other girls in the psych hospital three different times. My grandparents had already lost a daughter, and now you made them fear that they would a granddaughter, too? How disgusting.

I fought you constantly with medications. Instead, you became ice-cold water, crashed down upon me, and rusted everything. You tidal-waved me again and again, rusted every set of armor I had. I still got up. You made me breathless, but you could not drown me.

Finally, I found an armor that, while chinked, could stand up to you. You saw this, and regrouped.  You realized that I could swim, but you knew I couldn’t fly.

You made me think I could, though. You waved a white flag and signed a peace treaty with me. You let me think that my medicine made you innocuous, that we could live side-by-side in harmony. Your fingers, no longer black, but the brightest, shiniest, most intense white, found their way back into my brain. You told me that, yes, driving 110 miles per hour was a good idea. You told me that sex was inconsequential.

Death got in your way, though. It didn’t stop you, just made you change your approach. When my grandfather died, you jumped at the opportunity to whisper worrying-nothings in my ear. You called up your good friend, General Anxiety Disorder, got together for brunch, and really brainstormed ways to make me miserable.

If I thought you were bad, BPD, I had another thing coming with GAD. He did a great job. For about a week after Grumpy, my grandfather, died, he made me hallucinate. Do you know what it’s like to feel like there’s a demon floating above you as you try to sleep? Do you know what it feels like to think its tongue is working its way into your ears? Do you know what it’s like to go to school with zero hours of sleep because of this, feeling crazy from the night before? I do.

GAD made my chest burn, and my stomach churn. And now when I get heartburn, I wonder what’s making me anxious. Do you know how hard it is to go to school when you have a panic attack a week? That didn’t stop me though. Even with all your BS, I’ve never failed a class.

Eventually, I decided I’d had enough of you, and I found a new psychiatrist. I told her about you, about everything, really.

It’s been about 9 months on my new medicine. I haven’t had a cigarette in seven and a half months. I’ve had one panic attack in this time. I’ve lost 40 pounds. I never skip class just because I feel like it. I do my homework and I listen to my professors. I find silver linings. I’m living on my own. I’m happy. And the best part is I know you can’t stand it. Good.

So I guess here’s what I would really like to say to you:

You put me through hell. You made me do things I regret tremendously. You made me think that I was worth nothing more than casual hookups. You put me in the hospital three times. You almost killed me.

But you know what? You also taught me that I am stronger than anything this world has to throw at me. By making me feel worthless, you taught me that I am worth the world. By making me feel like a burden, you taught me that I am a gift.

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By keeping me in the dark, you taught me to always look for the light. You made my life either black or white, but I’ve learned that this world is a mix of grey. You tried so hard to break me. And yeah, maybe you gave me a couple dents; maybe I cracked in a couple of places. But you failed.

I am whole. I am unbroken. I am beautiful, and smart, and funny, and caring. I am an important part of this world, no matter how many times you told me that the world didn’t need me. I love myself a million times more than you ever hated me. I am so much more than you. You will never control me again, just watch.

Not yours anymore,
Sydney

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There was a mysterious little hallway tucked away at Armstrong Middle School that nobody, at least nobody I knew of, had classes in. You saw kids once in a blue moon wander in there, but for what? Who knew?

When the computer lab opened up in that hall, kids started to notice the different world they stepped in. It turned out to be a place called “K wing” but properly known as the special education department.

In 1999, when I was in the sixth grade, I was introduced to the world of the K wing. I spent some time in special ed when I was younger, but this time, I wasn’t a student.

After being caught up in some nonsense preteen melodrama, I vented to my guidance counselor that nobody understood the struggles I faced as a person with a disability. As a matter of fact, my exact words to her were, “I am the only one in this school with a disability. Why isn’t there anyone else like me?”

“Oh, but you’re not the only one,” she reassured me. “Meet me in the K wing tomorrow. You’ll be surprised at what’s in there.”

The following day, I walked into a large room with a group of about 12 teens of various disabilities, doing everything from passing out their homework assignments to learning how to make coffee for the teachers — minor tasks aimed at helping them be successful in the adult world. Some were in wheelchairs, others used little picture devices that reminded me of a modern iPad. But all of them were like me — a teenager just looking for acceptance and strength.

I became captivated by their world and got to know plenty of them on a personal level. They enjoyed having someone to spend their homeroom period with them.

“I think I might make this a thing,” I thought.

From that moment, I figured I could make a difference, even if it meant sticking out like a sore thumb. The plan to be as normal as possible went out the window, but I didn’t care. Each homeroom period, I made an attempt to be there. I was eventually added to their homeroom roster.

A few good friends came out of it, and a lot of great friends from the mainstream classes wanted to join in on the fun. Soon it became a thing.

Eventually, word got out that the kids our fellow student body made fun of were actually cool. We shared stuff in common like music, movies, cartoons and the like.

We were the K crew.

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From our time together, we made friendships that lasted a lifetime — not to mention we gained a better understanding of what life was on the other side of the hallway.

Eventually, we had it set where some of the younger kids who were caught teasing would spend a week with us to learn the same lessons we learned on our own. By volunteering our time, we made a small indent on our student body.

We learned what would soon be referred to as inclusion. I guess you can say we were the “O.G.’s of Inclusion,” as the kiddos put it. We learned we are all the same, despite what society and our peers had to say.

What started off as a simple tour in an attempt to ease my teenage woes became something beautiful.

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I haven’t always been vulnerable. Autism made me this way. It’s not a complaint, just a fact.

A week into his summer vacation, my son, Jack, told me he was bored. Well, he typed to me that he was bored. On November 7, 2012, our world was been turned upside down when our otherwise nonverbal son spelled out on a stencil board, “I am trying” and “I am really smart.”

Jack has progressed to typing on an iPad, and we can have some pretty productive conversations some days. It’s not, however, all rainbows and flowers now that Jack can type. He still has autism. And, quite frankly, it affects him tremendously. It sucks.

He types that he wants to learn on a regular basis. I appreciate his eagerness to learn, but when he typed he was bored, I decided we needed an adventure. Adventures in “autism-land” require a lot of patience and time. I need to be mentally ready for the stares. (We attract a lot of attention just with a service dog. But add in headphones and a kid who weighs 115 pounds and still holds Mom’s hand? People stare.) There’s also always the potential for aggression. This is just a part of Jack’s autism, and it ebbs and flows depending on a long list of items that may or may not be present. I need to be ready to have Jack’s impulsivity take over just when I think everything is going smoothly.

He likes history and battles, so I thought a trip to the Gettysburg Battlefields, only an hour away, was perfect. I enlisted the help of his amazing sisters. They were dead to the world in a teenage slumber when I happily announced, “We are going on an adventure!” Kudos to them — they came with little to no complaining. I was pumped. I could do this!

I was immensely proud of how the girls handled the stares and mumblings from bystanders. The “special” attention we get is a bonus from my perspective — preferred seating, fast service and going to the front of most long lines. For my teenage daughters, however, it just makes us stand out even more.

Our afternoon is going along swimmingly when, just like that, it starts. The aggression. Hair pulling, pinching, grabbing and screaming. Imagine the scene. It doesn’t look right when a kid pulls his mother’s hair. It doesn’t look right when a kid grabs his sister’s face while the other family members quietly try to pry his hands off her. It doesn’t look right when a big boy is having a tantrum equivalent to that of a 4-year-old.

Herein lies the vulnerability. To be in public, I have to admit we are a different family. We are louder than most, and sometimes, our behavior makes people stare with crazed eyes and mouths agape.

But today, I am congratulating myself for doing it. Our day ended a bit earlier than I predicted, but I put us out there, and we all handled it like champs. Autism might suck some days, but my family rocks every day.

This post originally appeared on Hardly Getting By

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