Some of the better moments of my parenting life have boiled down to this. Someone took ten seconds out of their lives to help us out. To accommodate us. To include my kiddo.

A simple gesture like the teenager who broke from her gaggle of friends to hold open the door for me when I was carrying/dragging my melting-down kiddo from the mall. She probably went right back to her friends and her life, but it made all the difference to me. Two years later, I’m still thinking about her.

“Hang on. Let me see what I can do.” I’ve heard this statement a lot when advocating for my kiddo. Sometimes they come back and they can do something. Sometimes not. Either way, they’re trying. I appreciate the effort regardless of the outcome. They’re taking ten seconds out of their day for me.

Imagine what you could do with ten seconds for someone else. It’s so easy in this autism life to dwell in all the times we’ve been shunned, scorned and screwed over. What would happen if we all shifted that attitude over to ten seconds of kindness? Not just helping each other out but everyone.

What if ten seconds of kindness meant accepting when something couldn’t be done for us the way we asked? What if we took that angry energy and channeled it into looking for a compromise?

What if we just accepted that people ask for help in different ways because their needs are different? What if we didn’t shun what they saw as solutions simply because it wouldn’t work for us?

What if we all just took ten seconds to take some deep breaths and chill the hell out a bit?

This post originally appeared on Autism With a Side of Fries.

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RELATED VIDEOS


Gabe+Film+Poster When Gabe Weil was diagnosed with Duchenne muscular dystrophy, doctors said he most likely wouldn’t live past 25. The genetic disorder led to progressive muscle deterioration and weakness; Weil began using a wheelchair at age 10 and required a full-time caretaker.

“I can’t stand up. I can’t move my arms. Just to breathe requires effort,” Weil says in video below. “When I was 15, my heart stopped and I nearly died.”

Despite a bleak prognosis, he set out to graduate college — in December 2013, he earned a degree from Washington University in St. Louis.

Right around that time, doctors told Weil he’d been misdiagnosed — they now estimated he’d live into his 50s. For the first time, Weil had to think about his longterm future. What would he do with his prolonged life? 

Weil’s journey is now subject to an upcoming documentary — “GABE.” You can watch the exclusive trailer above.

“GABE” is directed by Luke Terrell, a 23-year-old from Chicago, who first met Weil when he volunteered to be his notetaker and tutor in their junior year of college. Terrell knew immediately their relationship would extend past class — the two became quick best friends. The young director set out to help tell Weil’s story.

“Every interaction with Gabe, especially early on, left a deep imprint on me. The way in which Gabe navigates the world, both physically and emotionally, is so different from what I knew,” Terrell told The Mighty in an email. “It forced me to reevaluate my life philosophy and develop an intense appreciation for time.”

Terrell hopes sharing his friend’s story will help people unfamiliar with the disability community realize that we are all humans.

“Stereotypes exist for one reason only: a lack of exposure,” Terrell told The Mighty. “Gabe is not someone who wants pity. He has passions and interests. He has dreams.”

Weil doesn’t consider himself a hero, but Terrell disagrees. He says the reaction to the film so far, particularly from people living with muscular dystrophy, has been inspiring. Make sure you check out the first “GABE” trailer above.

“I’m just a guy trying to figure out my purpose in life,” he says in the clip. We’re certainly excited to see where he ends up.

The film is almost complete and filmmakers have recently launched a Kickstarter campaign for finishing costs.  You can learn more about the film on its website and also on Facebook.

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Dear Congenital Muscular Dystrophy,

You came into our world and crushed all our dreams. You changed the way we perceive a lot of things, the way we think about a lot of things. You forced us to alter our definition of “normal.” You made me cry rivers and gave me heartache I didn’t know was possible. Then you broadened my mind, my way of thinking.

Between January and September 2013, I would draw pictures in my mind of my daughter and her soon-to-come sibling holding hands and walking side-by-side, chasing each other around the house, laughing and playing. Then you stormed into our lives unannounced and walked all over my dreams, ripped my heart out and told us you were here to stay. Forever. I didn’t quite grasp that initially and did everything in my power to ignore you, pretend like you were not there staring me in the face all day, every day.

Eventually I guess you grew on me. I learned to accept your presence in our lives and started to see that maybe you weren’t entirely to blame for my misery and distress. Once that happened, you started to gradually alter my perception of my dreams. My daughters still laughed and played and held hands. You showed me it wasn’t you who crushed my dreams — I, in fact, crushed my own dreams when I was ignorant enough to believe that Celine’s entire life depended on bipedal locomotion.

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You shed light on Celine’s incredible mind, her bubbly personality and her sense of humor, which was apparent before she even turned 1. You reminded me that it was the brain that achieved miracles, not the legs. Walking is merely a form of transport, and if her legs can’t transport her, a wheelchair will do the job.

I feel bad for despising you so much initially, CMD. I can’t say I love you or that I don’t wish you would miraculously disappear, but I don’t think your so bad anymore. You’ve only been with us for 18 months, so maybe it takes more time; maybe I need to put in more effort to accept you, but I’m doing everything I can. Maybe over time as Celine achieves more, I’ll build more strength and be able to put in more effort. Maybe. I don’t know…

Sincerely,
Celine’s Mama

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Dear Autism,

Thank you.

I know, right? I’m just as surprised as you are. If I’d been asked to write this letter a few years ago, it might have started out more along the lines of “f*&ck you.” Amazing how much your perspective can change in just three and a half years.

That’s right. It’s been three and a half years since you first officially entered our lives. Three and a half years since my son was first diagnosed “on the spectrum” (pervasive developmental delay – not otherwise specified).

A lot has happened in three and a half years. My son has grown and learned and changed. I’ve grown and learned and changed. The others members of our family (my husband and my daughter) have grown and learned and changed as well.

This morning, I was dropping my kids off at school. We stopped outside my son’s classroom so I could help him change from his boots into his sneakers. We got one shoe on successfully, but just when I thought we were finished, he looked me in the eye and said, “Mom, my shoe is uncomfortable. Can we try again?”

Let me break that down for you. He looked me in the eye. He spoke to me using words. He used those words in a calm voice. There was no yelling. There were no tears. The uncomfortable shoe remained on his foot as he waited patiently for me to respond to his words. It didn’t get yanked angrily off his foot. It didn’t get thrown across the hallway. It didn’t get pounded against the floor, the chair or me.

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As the mom of a child on the spectrum, I see my son face challenges every day. His brain is wired differently, so there are many things that come easily to others (making eye contact, using words to express feelings, remaining calm in a stressful situation) that are challenging for him. And you know what, autism? That used to make me really, really mad at you.

I’m not going to lie, I’m still a little mad at you for all the challenges you present to my son. It’s not fun to always be thinking and troubleshooting about how the little bumps in the road and unexpected schedule changes are going to affect our predictability-obsessed little guy. But I’ve gotten to the point where the joy I feel in witnessing my son overcoming his personal obstacles far outweigh the stress of those moments.

So now I’ve told you about the challenges linked to my son’s neurology. But, that’s not all there is to you, is it, autism? That same neurology that makes some situations and tasks so difficult is also at the root of my favorite things about my son. The way he vibrates with bouncy, flappy excitement when he’s engaged in an activity he loves. The way he explodes into giggly, chortling belly laughs when he finds something funny, even when it’s something he’s seen or heard a million times. The way he gives hugs so powerful he almost melts into me. The way he says, “I love you, Mommy” with such complete devotion it leaves not one inch of doubt.

And so, autism, I can safely say that while I don’t enjoy the ways you make my child struggle, I can appreciate the satisfaction and pride that comes with seeing him overcome obstacles. I can appreciate the joy that comes from small accomplishments I might have overlooked if they hadn’t been so hard-won. I’m grateful for the opportunity to love someone who engages in the world in such an intense and uninhibited way.

I’m also grateful for the way you’ve helped me grow and learn and change over the past three and a half years.  As I’ve done what I’ve needed to do to help my son be successful on his unique path, I’ve become more empathic, more flexible and more patient. I’ve learned to accept and even embrace things I know I can’t change. And I’ve learned to passionately advocate for things I can change. I’m proud of the person I’m becoming, just as I’m proud of the person my son is becoming.

A lot of that growth is because of you, autism. I don’t know what the future has in store for us, autism… but if the last three and half years are any indication, I know you will provide many opportunities for us all to learn and to grow into people we never dreamed we could be.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Screen Shot 2015-03-08 at 8.49.22 AM To UBE3A,

I’d never even heard of you until Sean was 7 months old, but you were there all along. Actually, that’s when I learned you weren’t there. How could one little gene on chromosome 15 matter so much? We have something like 24,000 genes in our body, so how could missing just one little gene cause so many problems? Thanks to Dr. Harry Angelman’s discovery, we call you Angelman syndrome.

I struggle with my relationship with you. I hate you for what you’ve done to my son, but I love my son for exactly who he is and can’t imagine him any other way. Because of you, Sean will need 24-hour care throughout his life. I’ve never heard him speak a single word, and I know he has so many thoughts he’d like to express but struggles to do so. You’ve come close to taking his life with seizures. He’s had several surgeries and countless hospitalizations.

Without you, I wonder what kind of mom I’d be. When I became a mom, I became a special needs mom. I don’t know what it’s like to parent a child who doesn’t need your constant presence. You affect our entire family and every major decision we make. If Sean wasn’t missing you, what would his life be like? What would my life be like? Would my marriage be any different? How have you shaped my other children’s lives?

But I’m certain of a few things. I see the world differently now. I’m a better person for knowing you. I don’t sweat the small stuff. Life is all about how you handle plan B, and I know how to wing it. I have a deep appreciation for the amount of work it takes to achieve what others may take for granted. Sean began walking independently last week at age 14! I know you’re one of the reasons my marriage is strong. My younger three kids don’t know life without you. You have no doubt shaped their character traits. They too know how to go with the flow. They’re compassionate, caring, sensitive and loving individuals.

I think about all the amazing people you’ve brought into my life, not just through mutual connections we have but because of other genetic anomalies. I was inducted into a special club. I went in fighting, and now I can’t imagine leaving. These people have enriched my life in unimaginable ways. I’ve formed lifelong friendships with moms and dads, teachers, physical therapists, occupational therapists, speech therapists, music therapists, aquatic therapists, doctors, nurses, pharmacists, case managers and even our UPS delivery guy who delivers all of Sean’s supplies with gentle care.

It doesn’t do me any good to think about the what-ifs had our paths never crossed. You’ve been one of the biggest influences in my life, and I’m OK with that. I wasn’t always OK with that, but I am now.

Sean’s Mom

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For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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My class informed me that I’m a troll.

At first I thought they were referring to a hideous creature that hides under a bridge in fairytales or the troll from Harry Potter or maybe Fiona from Shrek. Then I learnt it was for another reason.

I told my class I was going to post a discussion forum online between 9 p.m. and 9:15 p.m. so they could pick tutorial subject options. I created the discussion but forgot to hit the “publish” button. Unfortunately, some kids were still awake at 11 p.m. waiting for me to publish it. They said they could imagine me sitting at home laughing like an evil super villain. So now, I’m the internet troll teacher — someone who causes trouble on the Internet just for fun. IT WAS AN ACCIDENT!

Why am I talking to you about this? I’m now going to introduce you to a weird creature — a twisted, nosey, irritating creature. This creature is the autism troll. Autism trolls lurk in the workplace and sometimes, in your own family. They may strike at any time; they will blindside you, and try as you might to forget it, their comments resonate.

One autism troll was a family member. Upon learning that Mr. H had been diagnosed with autism, the troll declared, “Oh yes, I know.” Um, how would you know? “Oh, you can just tell something is wrong with him.”  Boom, troll tries to make a hit; it grazes the chin, but Mom bounces back. I’d been obvious to me that something was going on with Mr. H, and it was probably obvious to some other people, but you don’t say that out loud!

Another autism troll’s habitat is the workplace. Upon informing the troll that Mr. H had been diagnosed with autism, this troll used the opportunity to tell everyone about the diagnosis and inform my boss I wasn’t coping in the workplace. Boom, troll tries to make a hit, but Mom deflects. Not much damage done. Lesson for that troll: Don’t mess with me! Believe me, I took care of business there.

The final autism troll I’m going to discuss also lurked in the workplace. I was in the staffroom, photocopying and chatting when a lovely non-troll asked me how Mr. H was doing. I explained things were going great and out of nowhere the troll said, “My husband has been doing some reading and do you know your son is autistic because you got him vaccinated?” Boom, troll makes a hit. We’ve got a stunned mom down, we’ve got a stunned mom down. All I heard was “Did you know you gave your son autism?” I’d never been spoken to like that before. Dear friends have asked me about the link between vaccinations and autism, and we’ve had some discussions but, I mean, who says that?

What you say and how you say things to a parent of a child with a disability does matter. Be a friend, ask questions, be supportive, but don’t be a troll.

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