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To My Autistic Grandson on Your Birthday

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When my babies were born, my mom gave me some great advice. She told me I should write down all the things my kids did or said because she knew how easily I would forget. Like most great advice from my mom, I only halfway heeded it. I started a journal I wrote in occasionally, but I was lazy. I wanted to. I really did. But life took over and the kids grew up.

I found that journal a few months ago and read it. Although I hadn’t written much, it brought back so many memories. Cherished memories I had forgotten. It was really great advice, Mom, so I resolved then and there to start a journal for my grandson Noah. This is how my blog started. I guess you could say I took this whole “journal writing” thing to a whole new level. However, these random thoughts I put to paper are not necessarily the things I want to tell Noah. They are just my thoughts. My coping technique. When he grows up, I want him to be able to see how much progress he made every year. So I decided to write him a letter on every one of his birthdays. I missed his 1st birthday, so this is his first annual birthday letter.

My dearest Noah,

You came into this world much like you would spend your next two years. Very quietly. As soon as you were delivered, you were transferred to a little warmer with bright lights shining down in your eyes, and the nurse started, very roughly I might add, to clean you off with towels. Your little eyes were swollen and your skin was tinged blue with the very typical cone head that newborns have. You looked around and let out a little grunt of discomfort, or perhaps irritation, at the fact the we had removed you from such a warm comfortable place.

Your eyes darted around the room, trying to process all the information they were seeing. The lights were so bright. The voices so loud. I’ve always wondered if the process of being born is scary. What goes through an infant’s mind as they emerge from their watery, safe cocoon? Some enter the world screaming and thrashing about as if in pain, or at the very least, confused. But you, my little blue-eyed wonder boy, were just the opposite. After your initial grunt of disapproval, you stayed really quiet. You were so quiet, in fact, that I think you had the nurses a bit worried. I could hear them say, “He’s not crying.” After a quick once-over by the nurse, she gave you the OK and wrapped you up tightly in the little striped hospital blanket, put a tiny knit hat on your cone-shaped head and placed all six pounds, nine ounces of you in your exhausted mommy’s arms.

Your eyes began to focus on her face, and your little tongue was jutting in and out, like a baby snake, as if you were tasting the air. It was one of the most beautiful things I’ve ever seen. You two, staring into each other’s eyes. Both of you were exhausted, but your mommy was on cloud nine. You absorbed your mommy’s gaze like a wildflower absorbs the sun’s rays and gazed right back. Never making a sound.

If I only knew then what I know now…

The first couple of months with you were quite the roller coaster ride. Not because you were a difficult baby; just because you were a baby. You had a lot to teach us and we had a lot to learn. Your G-Paw and I were surprisingly out of practice and your mommy was just a beginner, and trust me — there’s a big learning curve.

Through all the attempts at diaper changes and people coming in and out and dogs barking and bottles that were just a bit too cold or a tad too warm, you remained calm. Crying only when you were hungry or wet. Never complaining about the amateur way you were being held or cared for. You were so patient with us while we learned how to care for you. Always sleeping best on G-Paw’s chest. I would call you a “soap opera baby” because, just like the babies on TV, you were always so quiet and content. I remember watching those shows when my kids were babies and thought, “That’s ridiculous. Babies are never that quiet.” But you were.

If I only knew then what I know now…

Around 5 months old, you started watching “Sesame Street.” A lot. We had to put a time limit on it because it was just too easy to let you watch it. It would keep you occupied for the whole 30 minutes. Without a peep. You would smile at the characters and even giggle at them occasionally. You would turn your head to follow the TV better than any toy or hand movement or person. We laughed about it and said how cute it was that you loved “Sesame Street” so much.

If I only knew then what I know now…

You started becoming mobile at around 7 or 8 months. You were starting to crawl and pull yourself up. You were giggling and playing and just being an all around great baby. But it was here that we started to notice. You weren’t clapping yet. You weren’t making eye contact enough. You weren’t pointing yet. Something was different.

If I only knew then what I know now…

Over the next year and a half, the light inside of you started to shine brightly in our house. You lit it up with hilarious giggles when we played peek a boo with the stuffed Elmo. You would shriek with delight at the sight of bubbles and slides. You learned to walk and then you learned to run. And climb. Boy, did you learn how to climb. Going outside became an insatiable daily desire. You became obsessed with anything that had to do with the alphabet or numbers. You even learned how to put a whole ABC puzzle together by the time you were 18 months old. We were so proud of you! But you still wouldn’t talk.

If I only knew then what I know now…

Somewhere in there, we took you to see a doctor, and he told us about your autism. At first, we were sad about it. We didn’t know what it meant. We were scared. But soon, we learned how to take care of you, and you worked hard for us. You patiently went to every therapy appointment twice a week. You learned how to use some sign language and point for things you wanted. You started to make a little more eye contact. You learned how to lead us where you wanted to go by grabbing our finger and taking us there.

And you learned how to fly.

You have taught this family more things in these two short years than most people could even conceive.

You’ve taught us to trust ourselves more than we already did.

You’ve taught your mommy that she is stronger than she ever knew.

You’ve taught us that a diagnosis of autism isn’t the end of the world.

And you have taught us all to fly.

And you know what?

If I only knew then what I know now…

I wouldn’t change a thing.

We love you, Noah.

Just the way you are.

Your mommy adores you.

Your G-Paw thinks you hung the moon.

And I think you are just about the sweetest baby in the whole wide world.

And as I listen to your heartfelt, deep down belly laughs coming from the next room because of tickles from your mommy, I know you have so much more to teach us. You have so much to teach the world. And we all can’t wait to learn.

Follow this journey on G-Maw and Noah.

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How Owl City's Music Helps Me Through Sensory Overload

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It is difficult for me to find music that does not negatively affect me. Everything I listen to seems to swirl in my mind. Finding a musical fit for me is like finding someone to fit Cinderella’s slipper. It is a difficult task, but once I find the right ones, I am able to experience a music-inspired joy.

Music means more to me than it might for some other people. It drags me straight into a world of colors, which I experience due to my synesthesia. It calms me down, while most other things would do the opposite. I feel a smile begin on my lips, which unlike most of my smiles, is entirely real. However, if the music does not fit me, it will do the opposite. The colors will flash quickly in front of me. It causes me to feel shaky. Often, it can cause sensory overload.

My teacher in elementary school was the first to introduce me to Owl City. She was telling us about hot air balloons, and decided to play a song along with it. “Hot Air Balloon” by Owl City became one of the first
songs I truly enjoyed. Later on, after “Wreck-It Ralph” came out, I fell in love with another one of Owl City’s songs, “When Can I See You Again?” Life decided to introduce me to his wonderful music at the most perfect time, which I realized after I experienced my first panic attack at age 11.

I soon approached the point where I was unable to leave the house without headphones. As soon as I felt a sensory overload coming on, I would remember the lyrics to one of my favorite songs.

“I was so far out of place
Watching those stars in outer space
’cause I am so far from where you are”

“There’s a light show out my window somewhere way up there”

The lyrics not only were calming, but also were relatable. I felt as if someone were comforting me when I listened to the music. Every time I felt my life was out of control, I would put on my headphones and tune out my troubles. “Reality is a lovely place, but I wouldn’t want to live there,” one of his songs, “The Real World,” quotes. I relate to those words in many ways. Adam Young, also known as Owl City, might share many of my troubles. He has talked in an interview about possibly having Asperger’s syndrome, a form of autism. He has also discussed having insomnia, which is the inspiration for his famous song “Fireflies.”

Although I discovered his music way back in 2009, it still helps me today. I am able to shake my arms in joy when I hear his songs come on. For me, Owl City means being calm, and not only that but being happy.

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Photo source: Owl City Facebook page

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To My Brother on the Autism Spectrum as I Move Away From Home

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Life has never seemed easy for you. Our parents knew there was something different when you were 3 years old and not hearing. I was 6 at the time and didn’t understand autism like I do now. I thank you for helping me understand.

I remember how sad Mom was when they told her you might never talk, but you did.

I remember how frustrated Dad got because you didn’t make many friends, but now you are happy.

I remember how mean some of the kids were to you, and the first time someone called you the “r” word. At the time, you didn’t understand it was wrong. Now, when people call you that, you get upset but you tell them why it’s wrong.

I remember as a kid not quite understanding you were different, but loving you none the less. Sometimes you can be hard to understand, but not any more than our other siblings.

I remember your high school graduation and Mom’s tears of joy because people told her you would never graduate high school.

I remember when I got sick. You kept asking why I wasn’t getting better. Now you know I never will, but you show empathy and unconditional love for me. I will never forget that time a couple months ago when you were walking home from work in the cold, but you called me to ask if I wanted you to pick up a sandwich for me on the way home.

Finally, I remember telling you I was moving away. I still don’t know if you fully understand I’m not coming back for more than a week at a time. You and I hugged for what felt like an eternity and in that moment I realized what a remarkable young man you have become. You have proved so many people wrong. I hope life gets easier for you, but sometimes being an adult means rising up to face more challenges. I have no doubt you will.  And no matter how far away I am, I will always be one of your biggest supporters and cheerleaders.

Editor’s note: This story has been published with permission from the author’s brother.

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5 Autism Stereotypes I Fit, and 5 I Don't

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I wanted to write an article for April, for Autism Awareness month. Of course, I’m a bit late to the party, but I spent awhile deciding what to write about. Finally I settled on it: autism stereotypes. There are a lot of autism stereotypes out there, some good and some bad. But they can never apply to everyone. So I decided to break down 10 autism stereotypes I’ve come across — five I do fit, and five I don’t — to help prove this point.

I don’t like math. And I’m not good at it. There seems to be a stereotype that anyone with autism has to be a whiz at math. I’ve had people, when told about my autism, say things like “Well, at least you’re really good at math!” Nope. Math has always been my worst subject. For some reason, as soon as I see numbers, my brain wants to shut down. I took a logic class in college that replaced numbers with letters, and it made so much more sense to me. Still, this stereotype is so strong, I’ve had people who suddenly seem to doubt my diagnosis because I’m not a math genius. It’s important to remember that everyone has their own strengths and weaknesses — and yes, of course this applies to those with autism as well.

I do love animals. I’ve always been able to relate to animals better than to people, ever since I was a kid. There’s something about the way animals accept you and don’t judge that is comforting. Their body language is simple and easy to understand for me. Frankly, I understood cat body language long before I understood human. They rarely try to hide what they’re feeling and they’re very predictable. Perhaps because of all this, I find it easier to feel empathy towards animals than to people.

I don’t get confused by sarcasm. I have a t-shirt that says “I Speak Fluent Sarcasm.” Because I am a very sarcastic person. While it is common for people with autism to misunderstand and be confused by sarcasm, that’s not always the case. I’m a writer, I get sarcasm, I get irony, I get figurative language. I’ve always liked learning about words and how to put them together. I think this may actually stem from my autism — I had such difficulty expressing myself that I was eager to learn as many words as I could to express myself as best I could. I now have a tendency to use occasionally throw bigger, fancier words into conversation — not to show off, but to make the exact point I’m trying to. Fortunately, this trait really helps me as a writer.

I do have trouble with body language. I am getting better at this, but I do sometimes struggle. One big example I remember is when I was having an argument with an acting teacher of mine. He called my dad afterwards to tell him that, not only was I disrespectful, but I also walked away in the middle of the argument. When my dad confronted me, I explained I thought he was done talking. He had leaned back in his chair and put his head down, and I read that as “I can’t deal with this right now,” so I thought I was supposed to leave quietly. Apparently, that wasn’t what he meant.

Looking back, I can only assume he was trying to think of his next point, but at the time I was 100 percent convinced that he wanted me to leave, and that it would be the best thing for me to do.

I don’t hate parties. I actually like parties. When I was a kid I loved when we’d have parties at our house. My favorites were the Halloween parties we’d have, where we’d invite everyone in my grade. We’d have a haunted house room, a fortune teller room, a scavenger hunt, a piñata, costume contests… they were always the best. And I still like parties, though I may not be the biggest social butterfly. I enjoy chatting with small groups of people, participating in activities, and then leaving when I’m tired. I often need a day to “recover” from the intense socialization, but it’s usually worth it.

I do need time to myself. I need more time to myself than the average person might. That’s how I recharge. Again, it’s not that I don’t like being social. But it’s like a person who loves to run marathons (I have to imagine this, since I personally hate running). They may love running them, but they have to recharge in between or they won’t have the energy or capacity to run. It’s the same for me and socializing. I need time, by myself, doing something like playing video games or watching TV, to restore my energy.

I don’t hate talking. I tend to be pretty chatty, actually. Especially in classes — I’m the one who always has their hand up. I have an opinion on everything and always want to share. When I was in fifth or sixth grade, I wasn’t allowed to comment on other kids’ presentations because I had a tendency to correct them. It wasn’t about showing off or embarrassing them, but the idea that someone would leave the room with inaccurate information bothered me! Nowadays, I tend to strike up conversations when I’m bored.

I do have specific interests (that I love to talk about!). I’m especially chatty when you get me talking about my interests. If it’s about a video game I play, a musical I’ve seen, an animal I love, or a television show I watch, I’ll talk your ear off. Paired with my difficulty in understanding body language, I may ask you if you’re bored, since I have a hard time telling. And don’t be afraid to be honest. It won’t hurt my feelings, and I’ll just end up frustrated that I upset you.

I don’t lack empathy. Going off that last point, while I sometimes struggle to express it, I do have empathy. I care about what other people are feeling and am, deep down, a people pleaser. I have a bad habit of putting other people’s need ahead of my own, and I hate conflict. It’s ironic that I was often thought to be a troublemaker as a kid. In reality, the “trouble” I caused was always because of misunderstandings — not because I actually wanted to upset anyone! I can actually be a rather meek person and will usually let someone else “win” an argument just to end it. Of course, if it’s something I’m passionate enough about, that can be a different story.

I do have meltdowns. If I’m ever rude or mean, it’ll be for one of two reasons — either you’ve caught me in a really bad mood (we’ve all been there), or I’m having a meltdown. When I have a meltdown, generally caused by stress and/or sensory overload, I lose quite a bit of control over my body. I may lash out physically or verbally, all while feeling terrible about it. My brain is telling me to stop, but my body doesn’t seem to listen. I’ve gotten better at preventing and controlling my meltdowns over the years, but I still slip up from time to time.

So, that’s my list. I enjoyed writing it, and it really made me think about different conditions, and how multiple people with the same diagnosis can still be so different. I encourage anyone who has a diagnosis of any sort to stop and think about making your own list. You don’t need to share it, but it can be an enlightening experience.

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What Overstimulation Feels Like for Me as Someone on the Autism Spectrum

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As someone on the autism spectrum, I can get overwhelmed and overstimulated at times. This doesn’t always deter me from wanting to join in large social events, however. (I personally tend to be a social butterfly.) So when my friends asked me to join them at one, I decided to try.

We got onto the train that would take us to the event, and automatically I became a bit nervous. The train was much more crowded than usual. By the time we arrived at the station, I was feeling overwhelmed by the large amount of people and movement.

I began to drift away in my mind. I put on my sunglasses even though it was raining, trying to reduce the visual input. Soon after, I simply grabbed onto my friend’s hand and they led me through the crowds. Some music started, and so I put in earplugs. But it wasn’t so much the noise that was bothering me as the movement. Everything I looked at was moving in some way. By the time the event was over, I was still lost in my mind.

The best way I can describe my personal experience would be similar to being lost in a cave. The inside of the cave is my mind, and the cave walls are formed to block the sensory overload and overstimulation. I don’t want to be in there. I want to connect with the outside world. But I can’t find the exits. Or when I finally do, it’s only for a moment. I finally process what someone has said to me, and respond. But then I get sucked back into the cave again. It’s not always a choice for me, but my brain’s automatic response.

My friends helped me to get away from the crowds, and we ended up in a quieter restaurant for lunch. After maybe 30 more minutes of drifting in and out of my mental cave, I finally felt like I could process the world around me again.

Sensory overload and overstimulation is very real to me, and my reaction to it is not necessarily a choice. Only when I can get time and space in a calm environment will I be able to find the exits out of my mental cave I’m lost in.

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Autism at Work Summit Seeks to Increase Employment Opportunities

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Anka Wittenberg, Chief Diversity and Inclusion for SAP, stood at the platform to kick off the “Autism at Work Summit 2017,” part of an ongoing initiative the company started four years ago. The goals of the initiative were to:

  • Drive employment and greater inclusion for autistic individuals.
  • Share findings and best practices to change how companies
    define “talent.”
  • Create a platform for collaboration between the medical, academia, for profit and public sectors.

“It’s the only way we can find sustainable solutions,” she said.

The summit is a two-day event designed to spark that collaboration. Held at Stanford University, like-minded people have gathered to exchange ideas and find solutions. The hopeful outcome will be furthering what autistic adults need most in the workplace:

  • Acceptance
  • Accommodation
  • Quality of Life

The group will collectively look at how we can drive awareness towards acceptance and action. They’ll share ideas about the challenges, including how to scale the employment opportunities that currently exist.

“Every company, large or small, can benefit from having an autistic employee,” said Jose Velasco, SAP’s VP Products and Innovation, Autism at Work. “At the summit, we’re going to try and figure out how we can create durable employment opportunities.”

There’s been something happening with many employers. It’s a slow but steady shift but it seems to be gaining momentum. Companies are moving from having a charitable mentality, “We need to hire people with autism out of the goodness of our hearts,” to “We need to hire autistic employees because it’s a good business decision.” Yes, autistic employees are positively impacting the bottom line, and more companies are adopting this new mindset. The best part of the kick off was the panel discussion on “How Neurodiversity Drives Innovation” with John Elder Robison, Dr. Stephen Shore and Steve Silberman.

It was so exciting to see all three of these advocate authors on stage together to talk about this topic.

Collectively, they debunked the myths that autistic individuals aren’t capable of socializing, contributing to the workforce and making an impact for a company. “Instead of focusing on what we can’t do, let’s focus on what we can,” said Dr. Stephen Shore.

“I always wanted to blend in but I realized that everything that has contributed to my successes has been my differences, said John Elder Robison. “I see the great gift of being different.”

“Silicon Valley was built, in part, by autistic people,” said Steve Silberman.

So why do we need an Autism at Work Initiative?

John Elder Robison says that autistics have always been here. They are not new to society. Many have contributed to some of the world’s greatest inventions and discoveries. What’s changed is path to success, from academia to employment. Not everyone fits that formula and, as a society, we must break down the barriers and create new paths to employment.

“We’re just beginning,” said Jose Velasco, “When it comes to autism at work, we want to take the opportunities that are extraordinary today and make them ordinary.”

Here’s a link to watch the panel discussion. User: sap Password: bees

A version of this post originally appeared on Geek Club Books blog.

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