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

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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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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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How Autism Shaped One of the Most Important People in My Life

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Dear Autism,

I knew we were going to be intimately acquainted long before my son got his official diagnosis. I saw the signs, and I worried, but I was also so completely and blissfully in love with my son. His quirks made me happy. His obsessions became my obsessions. I soon learned every business in our town with Thomas the Tank trains and ceiling fans. It was just our life, and although there were worries, frustrations and struggles, I loved being a mom to Pete. I still do.

I’m lucky that my son is growing up in a time where I can read about the neurodiversity movement and what adults with autism have to say on the Internet. There is no way I could imagine my Pete without autism — so much of him is tied to being autistic. I wish some things were easier for him, but there is no way I would undo his autism. He would no longer be Pete, and at only 13 years old, Pete is one of the best people I know. I can only imagine the wonderful man he will become.

I should also thank you for turning me into the mother, and really, the person, I am. I am a better person with autism in my life than I ever would have been without it. Because of autism, I know how to advocate for both my sons. I learned early on that if I didn’t push myself out of my own comfort zone to help Pete, he would not get what he needs or deserves. That changed me. I also quickly learned which of my friends are true friends. Having an autistic son is a great bullsh*t detector. I don’t care anymore if people want to judge my parenting. I know it’s none of their business, and I know my family is fine.

Another great thing about having autism in my life is it’s helped me get to know other people with autism besides my son. I’ve met people with disabilities other than autism and their parents and families, too. These are my people. I found where we fit in the world, and I like it here. Pete participated in Special Olympics earlier this year, and I’m not exaggerating when I say it was one of the best days of my life. The feeling of being surrounded with love and acceptance is something I will carry with me for a long time.

So thanks, Autism, for your part in shaping an extremely important person in my life.

Sincerely,

Karen

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