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What I Want You to See About My Life With Autism

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On Friday, September 9, I woke up without peripheral vision. As I struggled to get our kids ready for school, I silently thought to myself “I can’t see.”

I knew what that meant. It wasn’t a first-time experience. It was an impending migraine. I took my medication and went back to bed, but despite the fact that the medication rids me of my migraines pretty rapidly, I still only managed to leave my bed twice that day.

You see, on Thursday I drove to Birmingham, Alabama, to attend a one-day conference. It was exciting. It was inspiring. I learned a lot. I got a chance to spend time with an extraordinary young man I am mentoring. It was all worth it, but in the back of my mind I knew I would pay the price.

This is the ASD (autism spectrum disorder) I live with.

Social anxiety and sensory processing issues are a huge part of my experience. The way autism affects those who live with it is as vast as the personalities of the people themselves. My life with autism isn’t going to look like the life of the other person you know with autism.

In fact if you’re secretly looking for anything that would indicate I am on the spectrum, I would say that you most likely won’t see anything at all.

Sometimes understanding how autism affects me can only be found in what you don’t see.

Let me explain.

What you don’t see is me leaving my home much beyond work, church, and trips to the gym. You won’t see tons of pictures of me out with family and friends on social media.

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You won’t see me at the football game, or the concert that everyone is going to. You often won’t see me hanging out at the mall or at an amusement park. You won’t always see me at the Memorial Day, Labor Day, or Independence Day cook outs and fireworks shows.

I love all of those events and environments, but the reality I live with is that I am often forced to choose very carefully how I spend my time and my sensory resources.

Perhaps that’s why when you see me I appear to be fine. What you think you see is someone not affected by autism when in reality what you see is someone who has given up dozens of opportunities to leave home so I can be seen in the few places you always see me.

What you don’t see is how much I prepare and how much I pray.

Preparation and prayer for most people is something they do when they take an exam.

Preparation and prayer for me is what I have to do just to exit my home.

Every day I spend hours preparing to encounter a world that my brain isn’t built for, and I pray for the grace, courage, and strength to manage it successfully. 

When you see that I’m doing fine just know that fine is a short distance between not being able to get out of bed on a Friday and being able to speak in front of hundreds of people on Sunday morning.

Fine is a short distance between failure and faith and fatigue and focus. Like a smartphone app stuck in refresh mode, my brain is constantly searching for data, taking in the sights, sounds, and smells using up all of my precious data, and the end result is always a drained battery that leaves me with just enough physical energy to climb out of bed to use the restroom.

That’s what you don’t see, but let me tell you what you do see.

What you see is a warrior. Despite my difficulties with sensory processing and social anxiety what you don’t see is someone who is weak. I am strong. I am a fighter. I am a gladiator.

Like the athletes who grace the gridiron on Saturdays and Sundays playing the great sport of football, my life is the perfect blend between beauty and brutality and between grace and grit.

What you see is a gift given to me by God. A gift to persevere. A gift to overcome. A gift to inspire. What you see is a talent for transforming life’s toughest moments into life’s most teachable moments.

My life on the spectrum showcases the strength of the human spirit. My challenges haven’t defined me but rather I have publicly defied the odds that have been stacked against me.

What you see is God using the stage of my struggles as a platform to showcase a divine strength. A strength that is so other worldly that it actually makes my life look easy.

What you see is the grace to learn how to be less of a taker and more of a giver.

Life on the spectrum may have taken parts of me but rather than responding by becoming a victim and a taker it has motivated me not to take things for granted but to take chances, take risks, take opportunities, take charge, and to take a stand, and by taking these things I have in return been given the grace to give the world the best of me.

To all of my awesome autism warriors, keep fighting the good fight. We see you!

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When a Mom in a Parking Lot Tapped Me on the Shoulder After My Child's Meltdown

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I must admit that I used to be snooty. Oh, not outwardly, I mean my friends would never have described me as such, but in contrast to today, I was snooty. I looked at parents in stores with small children having temper tantrums, and I would think to myself, Boy am I glad my kids don’t behave that way! Then I had my fourth child, Katie (I call her Katie Bird). She is 8 years old and the apple of my eye.  She is extremely intelligent, hyperlexic (can read on a college level with pretty good comprehension), and can name characteristics of most every animal in the wild. Katie was diagnosed with autism just before her third birthday.

One busy Saturday afternoon two years ago, I took Katie with me to our local Costco for a relatively easy trip. At this point, she still liked to ride inside the big part of the cart. Then we reached the aisle that had toys – that was all she wrote. I refused to give her the stuffed animal she was screaming for.  So I immediately took the items in my cart to the checkout that thankfully wasn’t too long, and made it through with some crying and screaming. As she calmed down slightly, I decided to stop at the customer service counter to do some quick business there. While interacting with the clerk, she had a meltdown. I remember thinking to myself that this shouldn’t take long, and we’d be out of there quickly. But the clerk stepped away a little longer than expected, and then took longer on the computer, then took a phone call, etc… The meltdown grew. People were staring, muttering not-so-niceties, and some were even leaving the line. I was actually starting to sweat, all the while trying to rub a fast-kicking leg of a 6-year-old in severe mental anguish and distress with a calming tone of voice, saying, “It’s OK, Katie Bird, we’ll be done in a minute and we’ll go home and get your guys.” We call her stuffed animals “guys.”

As the business finally concluded at the customer service counter, I made my usual apologies to the clerk, and started pushing the cart out the front door. As I was walking up to the gentleman who checks your receipt, he simply waved me on which at first I thought was nice… until he started clapping. And the clapping didn’t stop until after all the laughing started behind me. I was humiliated! I finally made it to my car and opened the side door to the van, picked Katie up from the cart and put her in her seat and started to belt her in when I felt a tap on my shoulder… Oh, here it comes, I thought… It’s a holier-than-thou parent to tell me off! So I spun around to find a small, young, smiling woman, holding her son’s hand.

She simply said, “Hi, what’s your name?” I sighed and said, “Julie”, and then started to blurt out that my daughter was autistic, but this woman put a hand on my arm and said, “I know, I know, it’s OK.” She went on to tell me that her nephew is also autistic, and that she thought I had done such a wonderful job inside the store with my child that she wanted to come tell me. Tears started running down my face as I muttered my thanks, and then she asked if she could say a prayer with me. She put both hands on my shoulders and started to pray as I silently wept. She told me her name, and then she was off as quickly as she had arrived.

I don’t remember her name, but I will always remember my little angel that day because she truly turned me from thinking everyone in the whole world was mean to thinking that there are some really good people out there, and sometimes you just need to be receptive to other’s help and prayers. I now pay attention to struggling moms in stores and ask them if there’s anything I can do to help — because it’s not the help, but just knowing that someone else can empathize with what you are going through and that you’re not alone.

As a side note, I did call the Costco manager to speak with him about the employee at the door. I asked that he not be fired, but counseled on autism spectrum disorder, and that not all screaming children are just “spoiled” by “indulgent parents.”

Image via Wikimedia Commons

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To the Woman Who Gave Me Something to Strive for as a Person on the Autism Spectrum

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Quite a few years ago, before online movie streaming, there was a place some folks may remember as the video rental store. I went there quite a few times, picking up some of my favorite movies that I would watch to escape from the world.

I loved looking through the return slot outside and trying to watch the movies disappear when I brought them back. The people who worked there were extra special. They were fun, kind and understanding. And this was before I was even diagnosed as being on the autism spectrum.

One day, my mom came home from renting a movie. I met her in the driveway as she got out of the car. We started having an everyday conversation, and then she stopped.

“By the way, I wanted to tell you that as I was going to pay for the movie, the young woman behind the counter was talking about you,” she said. “She looked at me and said that you are going to go far in life. I said back to her that I thought so, too. But she responded by saying no. She said she knows you will go far. I just thought you should hear that.”

At the time, I didn’t really understand. It was nice to know that someone believed in me like that. But I didn’t realize how amazing that was. I look back on it now, probably over 10 years later, and I still hear those words clearly. Someone who barely knew me truly believed in me. And every time I faced challenges, I remembered those words again. It gave me something to strive for. I wanted to live up to what she had said. I wanted to go far.

And as someone on the spectrum, I have. I can drive. I am independent. I’m an author and a public speaker. I even volunteer my time to help others. These have been huge accomplishments for me.

So, to the woman at the video rental store, I want to thank you. Thank you for believing in me when I didn’t really know what to believe. Thank you for seeing me for the person I am, and for reminding me how capable I am. I hope that I’ve lived up to your expectations, and that I continue to do so.

Lead photo source: Thinkstock Images

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It's Not About You. It's About Me and My Son.

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It’s not about you, it’s about me and my son.

Please understand I am beyond grateful for the kind gesture of goodwill or wishes you send our way. However there does come a time when I stand up for my son and myself. A time when I say enough is enough. Or a time when I say no thank you, we are fine. While I am sure you have the best of intentions, please know that while I always welcome trying new things, I will always put my family first.

When I don’t accept your invitation to a party, please know it’s not about you, it’s about me. You see, large crowds are tough for us. It takes a lot of strength for my son to take all of the sensory information and process it in a manageable form. At the party, being around food my son cannot eat is tough because it can quickly set off a meltdown. It takes a lot of preparation for such a party. We prepare food for him, and we may even ask to coordinate with you. We may complete his scheduled therapy and medications at alternate times just to be there. Don’t get me wrong, we want to be there, but sometimes we need to say no. We have a lot going on, and our family downtime has become essential.

When I turn down an idea you may have for my son, please know it is not about you, it is about me. I am not trying to be difficult. Please know the idea you recommended makes sense, and the reason I am turning it down probably does not. But I know my son, and I know the idea you have suggested will more than likely not work out the way you see it going. While I want my son to be included more than anything, I need him to be in an environment where he has a fair opportunity to learn the same as every other child.

When I say no to helping you on a certain day, please know it is not about you, it is about me. I was up until midnight last night working and up at 4 this morning with a screaming child. I just cleaned up for the fifth time before noon today. I have dirty dishes in the sink, three therapy appointments today and a child who needs me. I want to come help you and be available, but I also need to take five minutes to breathe and take care of myself.

There was a time when I said yes, when I said yes it was about you and not me. I learned that by taking care of myself I am better able to take care of my family, and part of taking care of myself is saying no.

Image via Thinkstock.

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If the World Was Built for Me

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If the world was built for me, there would be nothing “wrong” with me. I would be happy and safe and certain and successful.

If the world was built for me, when I met people there would be no expectation of physical contact or small talk. We may ignore each other with a socially acceptable nod, or throw ourselves into a deep and meaningful conversation.

If the world was built for me, we would all sit next to each other, not opposite. Things would be based on literal words, not guessed expressions and gestures.

If the world was built for me, there would be a compulsory day off for everyone after any social event. Just so we could all take the time to recharge and process things.

If the world was built for me, work would be about working and nothing else. There wouldn’t be the necessary interaction that goes with it. My productivity would skyrocket. Working days would shorten. Free time would be shared.

If the world was built for me, you’d ask me why I’m constantly fiddling with a piece of whatever it is I need that day, and I’d tell you with a smile. You’d chuckle and accept it. I’d like you more.

woman on a tire swing

If the world was built for me, noise cancelling headphones would be handed out in crowded places, trains would be bigger, people would be banned from touching people they don’t know without permission. (I don’t mean criminalized. We have that, and it doesn’t work. I mean magically banned.)

If the world was built for me, I could touch and revel and find joy in the textures that please me. And I could hide from and keep away from those that fill me with pain and revulsion.

If the world was built for me, you wouldn’t ask me how your clothes look, unless you want my honest opinion.

If the world was built for me, there would be an airlock between my home and the real world. A buffer zone for daily encroachers. An arm’s length.

If the world was built for me, any invitation would come with a detailed plan of where and when and how. I would be able to construct a plan and a map with little extra effort from me. I would know what was happening.

If the world was built for me, people would let me know if plans needed to change. They would message me and minimize the pain in my head as I grind the gears to adjust.

If the world was built for me, family gatherings would keep me safe. Touching, hugging, kissing, would all be on my terms. Talk would not make me feel alien and alone. It would be safe and kind and loving.

If the world was built for me, real rules would be explicit, and fake rules would come with an explanation. I wouldn’t find myself following rules that everyone else knows aren’t real.

But the world isn’t built for me.

It’s built for people who like those things, or can cope with them, or don’t like them but don’t mind, or don’t like them and can say they don’t like them, for reasons that are valid in the world of everyone-else.

The world isn’t built for me. So as the person with a brain that isn’t the norm, I have to find a way to fit.

I sometimes wonder if you would like my world, with its gentle structure and routine, its beauty and its simplicity, its honesty and its truth, its patterns.

I sometimes wonder if I’d miss your world if it went away. As exhausting and painful as it can be, like cold, blunt metal, all ridged and hard to lean on, it has its charms. It has its moments. It has its joys.

If the world was built for me, I would make sure the world could be built for you too.

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Going Beyond Books to the 'Whole Different Story' of Living With Autism

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We have a saying in the autism community, “It’s easy to read about autism, but it’s a whole different story to live it.”

We are at a crossroads in our community today because there are countless people on the autism spectrum, along with their families and friends, sharing their stories in blogs, journal entries, books, documentaries and so much more.

When I was growing up with autism, that wasn’t always the case. Then John Elder Robison came out with his book “Look Me in the Eye” in 2007. He tells his story of being diagnosed with Asperger’s syndrome and his incredible life growing up on the spectrum. It became a New York Times Bestseller and led to a movement of other people with autism wanting to share their own autobiographies with the world.

In 2010 HBO Films released “Temple Grandin,” starring Claire Danes, a biopic about Dr. Temple Grandin, a famed animal husbandry expert who was diagnosed with classic autism at a very early age. The film received critical acclaim and won several Emmy Awards including the Primetime Emmy Award for Outstanding Television Movie. This helped spur another movement towards the entertainment industry looking to tell more stories about people on the autism spectrum.

Because of that, I have a favor to ask of everyone reading this article today. The next time you are trying to learn more about autism, consider having people with autism speak about their experiences at your events. While reading about autism is important, listening to the experiences of those who have grown up with autism will give you a whole new outlook on our community. Hear their successes, their challenges, and you will learn about how wide of a spectrum we have out there.

You may be surprised to learn how many people with autism are going into the world of motivational speaking. I started speaking professionally about my life on the autism spectrum in 2011 and have never looked back. Other names in these ranks include Dr. Temple Grandin, John Elder Robison, and Dr. Stephen Shore along with countless others. In addition, we need to hear from families of those who are on the severe end of the spectrum, who may have challenges that require lifetime care and supports.

With all of these voices in our community, let’s make sure they are given the opportunity to be heard.

A version of this story originally appeared on Kerrymagro.com.

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