3 Years Ago, My Letter to Autism Would Not Have Started This Way

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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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Angelman Syndrome Is One of the Biggest Influences in My Life. And I’m OK With That.

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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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Don’t Be an Autism Troll

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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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Why I’m Not Breaking Up With My Daughter’s Disability

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Screen Shot 2015-03-07 at 8.04.41 AM Dear Hypotonia,

We’ve been together for two years now. My daughter, Ceci, introduced us.

After our first meeting, I obsessed over you. I Googled you. And once I learned all about you, I cried. I cursed. I questioned God. By the time I was out of tears and words and prayers, I learned to accept you.

Together, we’ve met many people: doctors, therapists and friends. And together, we’ve found an amazing support system I never knew existed before you.

We’ve traveled to hospitals in search of diagnoses and to department stores to find shoes that would fit over braces. And although we don’t have any concrete answers yet, Ceci does have a great pair of shoes because of you.

You’ve stayed up with me late at night when worry and doubt have surrounded me. As I cheered when Ceci took her first steps, you were there too. In your own way, you’ve managed to take some typical everyday moments and make them extraordinary.

You’ve proven to me that a 2-year-old can be the strongest person I know. And in doing so, you taught me that strength is not something a person is born with. Strength is born out of effort and sheer determination.

I never asked to be on this journey with you. It would be easier to break up, to call if off, to be done. But I’m not a quitter.

So as much as I would like to make this breakup official, I can’t. It’s not you. It’s me. And I’m OK with that.  Because each and every day, you remind me that no matter what obstacle our family faces, there’s always hope. And hope is an amazing gift.

Love,

Ali

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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Why I Wouldn’t Get Rid of My Invisible or Visible Disability

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Dear Learning Disability and Severe Language Disorder,

I’ve lived with you since my early years. Because I was born just over three months prematurely, I’ve had to deal with a lot of developmental delays due to a lack of oxygen to my brain.

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Because I was diagnosed with you, I process concepts differently. Because of you, it takes me longer to read and to hand-write notes. But nevertheless, I overcome these challenges every day and showcase the abilities I’ve been able to accomplish in life.

You’re part of who I was created to be. In spite of the obstacles I deal with, I wouldn’t change or get rid of you.

In spite of my severe language disorder, I’ve slowly learned to speak, though it can be hard for others to understand me. I communicate via audio as an advocate for people with special needs.

You, dear disability, have taught me to be aware of the difference between invisible and visible disabilities. In my case, my learning disability is invisible and my severe language disorder is visible.

Despite the difficulties I face every day, I can still celebrate the many abilities I do have. This past month, I and 10 other finalists were named the national finalists for the American Association of People with Disabilities 2015 Paul G. Hearne Leadership Award. In 2012, I received the Les Brownlee Scholarship form the Chicago Headline Club and the Matthew Freeman Award for Social Justice from Roosevelt University, where I received a Bachelor of Arts in journalism.

I believe I’ve been given these disabilities as a way of being empathic toward others.

Your friend,

Daniel Smrokowski

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 [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Watch a Hockey Fan Who Cannot Walk or Speak Score the Best Goal Ever

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Cammy is a Chicago Blackhawks fan who was born unable to walk or speak. Her dream was to score a goal out on the ice with her favorite player. So, as part of the #WhatsYourGoal social media campaign, the Blackhawks set out to make that happen.

In the adorable video below, Blackhawks defenseman Duncan Keith, Cammy’s favorite player, straps a pair of skates on her, and the two hit the ice. Keith and Cammy maneuver around the rink, going over some basics before heading toward the Blackhawks goalie.

Cammy may not be able to speak, but her squeals of delight after she and Keith knock the puck into the net are unmistakable.

Watch Keith and Cammy’s heartwarming interaction in the video below.

*Feature image from the Chicago Blackhawks Instagram.

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