Hello, My Name Is Autism

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I recently had the honor of being published on The Mighty. The site shared this post that I wrote about my son for World Autism Day. The post was meant to document his journey as well as raise awareness for autism and Asperger’s syndrome. I’ve had wonderful responses to it and, because of the post, have connected with fantastic moms of kids around the country whose snowflakes are similar to mine. I’m so grateful for the opportunity to share our story.

There was just one thing.

When The Mighty shared our post, they gave it another title. On The Mighty, the post appears as “Most People Don’t Realize My Son Has Autism. I Want to Change That.

My first reaction to the new title was not a positive one. It brought to mind a giant sticker on my child’s forehead: “Hi! I may seem normal, but really I have AUTISM.” I didn’t even want to share the link to my published post. I was worried about judgment based on that title. But then the brilliance of it began to sink in…

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If you follow any autism organizations or blogs, you’re probably aware of a divide within the community. There’s a seemingly increasing gap between those who want to focus research and awareness around finding a “cure” for autism and other spectrum disorders and those who are more focused on understanding and accepting people with the condition. I’ve a hard time falling into either camp.

On one hand, if I could wave a magic wand and make my son’s anxiety disappear, I would. I’d love to know that I could send him to a science class without worrying that something will send him into a panic. I’d love if he could sleep at night without anxieties and nightmares. I know my husband would love to wave that same magic wand and make our son understand sarcasm (though I tend to find the literal interpretations amusing!). I might, however, wave away the difficulty my son has interpreting body language and other nonverbal cues. I might also zap away his sensory sensitivities or his difficulty focusing. It would certainly make life easier.

On the other hand, though, the longer I spend trying to trace my son’s unique thought processes and the more I strive to understand the way his mind works, the more amazed and enthralled I become and the more I realize that tied to so many of his challenges are his incredible strengths.

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He’s incredibly literal-minded and finds a lot of humor and nonverbal social cues difficult to decode. He probably won’t notice if you don’t really want to hear about all the different species of snakes he’s held. But what he does understand about emotions, he understands with all his being. If you’re crying, he will sit with you and hug you until you stop, probably shedding some tears himself. He protects his friends and his family from physical and emotional pain with a blinding intensity. He would, literally, give you his last cookie to make you smile.

He could not go into a public restroom for years because the sounds were too overwhelming, and he still refuses to use a hand dryer because of the noise. He can also, however, use that heightened sense of sound to recognize an impressive array of voice actors and common chords or melodies in seemingly unrelated pieces of music.

He sometimes has social difficulties due to his fixation on certain topics: animals, a TV show, dinosaurs, etc., but his knowledge on said topics would put most adults to shame, and the joy he finds in sharing new facts with the people he loves is beautiful to behold.

He has issues with attention and focus. It takes frequent reminders to keep him on task with schoolwork or chores, but when he picks up a book on extinct species, you will never pry him away. It’s almost as if his brain refuses to use its powers of focus and attention on common tasks; they must be reserved and stored for maximum strength to unleash on only the most important of subjects.

He sometimes has a difficult time relating to peers. The moodiness and “cool kid” act that seems pervasive in our culture right now is completely lost on him, but he will find a special toy to hand to the visiting toddler at our house, coo to a friend’s new baby or read to his preschool-aged brother with infinite patience.

He does have challenges I’d love to wave away or “cure,” but the way I see it, they’re almost all irrevocably tied to some pretty amazing strengths, and never would I want to wave away those. Those strengths, those quirks and even those challenges are all part of the complex fabric that is my beautiful son.

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So… do I want to label my son for all to see? Do I want everyone who meets him to say “Oh! He’s autistic!” Of course not. I take pride in the fact that he can and does blend well into most “mainstream” environments… but here’s what I would like to see change. When we talk about autism, I want us to talk about the strengths and not just the challenges. I want us to talk about the good and not just the bad.

My son recently accompanied to a series of classes on parent leadership. While the adults met, a supervising teacher and a group of teenage volunteers watched the kids in the next room. The volunteers loved my son. The first week, he drew flags for them from countries around the world and then a self-portrait in which he correctly labeled almost all of his anatomy. They raved to me that he was “the smartest kid ever” and begged me to tell them all about homeschooling, convinced that was why my son was so intelligent. Never once did it occur to them that he might have Asperger’s.

On the last night we attended, my son had a rough night. His brother had been tired and grumpy, and as I’ve mentioned, my son is fiercely protective. Somehow, he became convinced that one of the volunteers was trying to take away his brother’s special stuffie cow “Moo Moo.” I heard the screaming from the next room, and the teacher and volunteers begging him to calm down. When I bolted next door, I found him pressing himself between two bookshelves, holding his arms around his head, drenched in sweat and crying. As we left, the same volunteers who’d been praising him for weeks asked me “Is he OK? Wow…. That was…. Wow.” Now, they saw the autism.

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I don’t wear rose-colored glasses. I know autism can be angry and ugly and anxious and heart-wrenching and painful. I know I’m lucky that we’re at a point where most days those meltdowns are only simmering on the back-burner. I know that even in this “good place,” my son still struggles much more than a neuro-typical child. But I also know there’s beauty and strength and insight in my son that’s unique and special to him and his journey.

I don’t want everyone to see the label when they look at my child… but I’d like them to see it not just when he shows them the challenges. I’d like them to see it in the strengths as well.

This post originally appeared on Finders Seekers.

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When I Realized ‘Normal’ Is Just a Dial on the Washing Machine

For the longest time, I remember wishing I could be just like everyone else. Wishing I could play sports and just to be able to conquer the rock climbing wall in elementary school. I didn’t realize I had cerebral palsy then… let me rephrase that, I didn’t accept that I had cerebral palsy then. I knew I was different, but I still had that hope that one day I would be able to be “normal.”

It wasn’t until I was put back on my IEP in eighth grade that I realized that I needed some help. They put me on my IEP because it seemed has if my muscles were getting in the way off my education, so they put me in a school-based therapy program.

The next year I started high school and was able to see that in life, nobody is “normal.” Everyone has their differences. Some people are short, while others are tall. Some are thin, while others are not. Normal is just a dial on a washing machine.

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The moral of this story is that it’s OK to me different. We shouldn’t have to hide who we are just to make other comfortable. And I have learned to embrace my differences.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to [email protected]ghty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The True Heroes Who Don’t Make It Into Museums or History Books

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I spent Easter weekend in DC visiting my brother and hitting the museums. Mostly the air and space museums. I went to both. The one on the mall and the giant one out at Dulles. They have the Space Shuttle and the SR-71 Blackbird.

Seems to me that humans have been trying to defy gravity for a long time, but gravity always wins. You can’t escape it.

I also took some time on Easter Sunday to visit Arlington National Cemetary. If you want to experience gravity, I suggest you take some time to walk the solemn grounds and come back to Earth a little.

I was visiting the internment site of my cousin, Christie Day. She was just as much a hero as all the people I learned about who tried to defy gravity. But she was the opposite of them. She accepted gravity. She stuck close to the ground and focused on the task at hand, raising an amazing son who has autism.

She was a real hero, but not one you will read about in a museum. She was just as brave, if not braver. She was the reason her son is an amazing young man now, who is his dad’s best friend and who is smart as a whip. You see, Christie was his hero. She home-schooled him and personally and tirelessly made sure he was ready for the world even though she was dying from cancer. The gravity of all gravity.

She was barely 50 years old. She built a classroom for her son in her house and educated him perhaps better than any school could. She never stopped smiling and fighting the disease that would eventually win. She is one of the people who make Mom cry when remembered. You see, people like Christie and Mom have a special tie because of the gravity that has forced them to remain grounded for a greater purpose. I am sure they would love to spread their wings and fly for the stars, but they cannot.

They are tasked with a much greater but much unheralded purpose: They care for us. The special ones. They sacrifice their potential in the world that we herald in museums,  only to be the heroes in my world. They deserve to be laid to rest amongst those whose bravery is unchallenged. They are the true pioneers who brave new worlds for their children.

They make the future brighter, if only for their child. They defy gravity every day. Their museum is in our hearts.

The Mighty is asking the following: What’s a memory with a loved one that you didn’t realize meant so much until they passed away? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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To Anyone Who’s Ever Said I Can’t Dance, Watch This

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I’m a teen with cerebral palsy, and I love to dance.

Throughout my life, people have bullied me because of the way I walk. They’ve made assumptions about me because of my condition. Since I love to dance, I thought I would make a video of me dancing. I’d like to hopefully inspire others to do what they love, despite what others think of them.

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I Knew She’d Have Lots of Needs. I Didn’t Know How Much I’d Need Her.

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I’ve had a lot of titles in my life, both professional and personal, but one of my favorites has always been “Stephanie’s sister.”

I was 9 and she was 8 when she was adopted. I have a vague recollection beforehand of my parents explaining to my siblings and me what it would mean to welcome her into our family. I remember them saying we had to all be on board, that this was a commitment we were all making together.

As a 9-year-old, I doubt I grasped at all what they were asking of me. As a 9-year-old, I was happy to make her my sister. She was a great playmate and I didn’t mind sharing my room with her. To me, these were the requirements of a sibling. She has stayed a great playmate for children between the ages of about 4 and 9.

What I understand now that I’m not sure I did then is that my little sister is never going to grow up.

Stephanie was born ridiculously early and weighed a grand total of 1 pound, 8 ounces. Her birth mother was unable to care for her.

Stephanie has pretty severe cerebral palsy and is mentally about 3-4 years old. We’re going on 12 years of watching “Arthur” and “Sesame Street” together and I couldn’t be more thrilled.

It hasn’t always been easy. Sacrifices have been made both by me and by all of my other siblings. Today, Stephanie is 22 and she can’t be home alone. She can’t feed herself, clothe herself, or use the bathroom; she is completely dependent upon me, my siblings, and our parents.

I always felt like complaining was not an option. In high school, I couldn’t stay after and hang out with my friends because I had to get Stephanie off the bus. Sometimes I couldn’t go out because Stephanie needed a babysitter. A lot of my parents’ extra time and money went to her care. Sometimes my issues and my concerns felt less important, which hurt my feelings occasionally. She also occasionally has a temper. You’d better not take her favorite doll, blanket, or change the channel on her favorite show or you will feel her wrath. She can scream louder than almost anyone else I know.

It’s not been completely magic growing up with Stephanie, but it’s been pretty close. My sister, in spite of all her limitations, is one of the happiest people I know. She always has a willing and warm smile for anyone walking into a room. She is friendly, outgoing, always wanting to play and be the center of attention. She is essentially the star and light of any room she is in.

I’m pretty certain that there wasn’t a single high school dance she didn’t attend; boys would call my mother and ask if they could take Stephanie. They’d take her to dinner, generally a child-appropriate movie, home for a quick diaper change, and then the dance. She was even voted high school royalty her junior year at the Sweethearts dance.  She was certainly more popular than I was. I had my friends, but Stephanie had the entire school wrapped around her finger.

It was in high school that complete strangers began approaching me asking if I was “Stephanie’s sister,” but it wasn’t limited to her school friends. Children in the neighborhood would ask the same thing, kids at church, and occasionally people around town at the grocery store or just filling up on gas. Stephanie has made the lives of everyone she has met at least a little better.

Stephanie is perpetually the sunlight in a stormy world. On my most difficult days, I have found safety and comfort simply lying on the floor next to her. Stephanie has made me a better human being. She has taught me patience and compassion. She has shown me to how to smile through pain and face life head on. She has taught me to not judge people based on their appearance or their abilities.  She has taught me through example what it means to give and receive unconditional love.

When I reflect back to being 9 years old and sitting around the dinner table, listening to my parents try to explain the kind of commitment my sister would be, I can’t imagine they could even began to fathom how much better our world would become once she was in it. I’m sure they knew it would be hard, and it would be different, but I can’t presume they even began to understand how much better we would all become for having her in our lives.

I love my little sister so incredibly much and even now as an adult, when life is hard and I’m not sure what to do, she’s the one I want see. She’s the one I want to play with. She’s the one that I want to watch the same re-run of “Arthur” with for the hundredth time. Being her big sister is not only my favorite title, but also an incredible privilege. I love you, Stephanie.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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How 2 Strangers Showed Me the Error of Wanting ‘Perfect’ Kids

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By the time Nicolas was about 2 years old, my hope that his diagnosis of a genetic disorder was somehow a mistake had dwindled. My dream that I would wake up one morning and he would speak, or crawl or do something “normal” was fading. I still had the faith, once in a blue moon, to pray for God to heal him.  But I was on my last straw with God, too.

Then one afternoon as I exited a training course,  the instructor asked me how Nicolas was doing. I guess because the course content was on counseling and eliciting honest responses, I couldn’t muster the usual “He’s fine!”  Rather, I complained that I was frustrated. Because the instructor also happened to be a pastor, I explained that my frustration was with God. I had grown tired of praying for Nicolas, and wasn’t sure what to do next. “I just want him to be perfect” was the exact quote I used to justify my despair.

The pastor then began to tell me a story about some friends. He had recently been to dinner with a couple whose teenage daughter has Down syndrome. He described how wonderful their family dynamic and quality of life was, and how they had told him at dinner: if they could go back and change their daughter’s diagnosis, they would not. The pastor then challenged me to consider that my son is already perfect, and that perhaps I’m the one who needs God’s touch.

Well imagine my outrage! I couldn’t even put into words what horrible people I judged those parents to be. Who would be so cruel as to not want their child to be perfect? To willfully accept the additional hardships and struggles that will follow their child her entire life, and actually refuse a change of course? I argued with those people I’d never met all afternoon. But they wouldn’t leave me.

By evening, I was physically exhausted from the mental and emotional battle I’d waged all day inside myself. It started out aimed at the mystery family, but ended up directed at God. Despite my protests to the contrary,  I couldn’t shake the distinct feeling that this was God’s message for me: stop begging Him to make my son perfect, and see that my son IS perfect. Shift my perspective.

In my fatigue,  I begrudgingly uttered this one small prayer: “God, if you want me to have the same stupid attitude as those other people, you are going to have to really change my heart and mind. I don’t understand, but if that’s what you want, you have a huge job ahead of you.”

That was the moment. I believed that I gave God permission to show me His perspective about His creation. Over the next few years, I began to have the filter of my own selfishness removed from my eyes, and was able to truly see my son, Nicolas, in all the splendor that I believe God intended for his life. My perspective was radically changed, and it affected every area of my life.

Nicolas is now 14 and he’s fantastic! He has impacted more lives for good than most people ever impact in a lifetime. He is special in every wonderful way possible. He is a unique treasure that has come with a cost, as all valuable treasure does.

I never knew the name of that couple, or their daughter. Never met them. But they are the ones who, by sharing their story with all who encountered them, changed the way I will forever see special needs. What would I say today, if given the opportunity to go back in time and change that diagnosis? Absolutely NOT.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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