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


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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The Unexpected Trinkets Autism Brings in Its Carry-On Bag


Dear Autism,

From the moment we learned your name, you’ve come with some crazy and sometimes painful extras in your carry-on bag.

You’re the reason for all those quirky compulsions, like stuffing toys under the fridge that my scrawny chicken wings can’t seem to budge. Or the itching desire to toss shoes in storm gutters so I have to call my husband and have him fish out that shoe with his extra long arms. In front of people. It’s your fault we can’t seem to master the art of not searching for coins endlessly, including in strangers’ purses.

You bring a lot of tough stuff we wish didn’t get tossed in with the mix, but our family can say this. You’ve brought us a deeper understanding of unconditional love and patience (even when you’ve created the urge to lose my diamond earrings in the tub drain). Those are replaceable. You’ve taught us that having differences is truly not that big of a deal. It doesn’t change the fact that everyone needs to feel loved and accepted. If anyone else wants to shout for joy while clapping in the grocery store, we’re totally joining in! Now, we truly know the value of great friends because you’ve helped us weed out the ones who just aren’t a good fit in our lives. And we’ll always have a funny story to share with them!

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Lastly, you make me appreciate the small but gigantic moments that are truly a big occasion for us, like seeing an IEP that has almost every goal met (I have one incredibly hardworking boy!) or hearing a first sentence put together on an iPad. Oh, the pride on both of our faces! I don’t think any mom or son has been more proud than we were in that moment.

I still think you’re a schmuck for all the tough stuff you bring, but thank you for allowing us the opportunity to cherish the small things we may have once overlooked. Those are the trinkets in that carry-on bag.

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

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I Lived With a Misdiagnosis for 33 Years. Here’s Why I Wouldn’t Trade My Experience.


jean
Before my dystonia diagnosis.

Dear Dopa Responsive Dystonia:

Why are you so difficult to diagnose? Why do all of your symptoms mimic cerebral palsy? Why do few doctors know what you are even though you’re so easy to treat? Why did you challenge my everyday living for 33 years, when a little pill could have eased all my pain? Why did you think you could take over my life? You must not have known how strong of a person I am because I rarely let you get the best of me.

I hate to tell you this, DRD, but I won! Even though I went untreated for three decades, I was able to make friends, go away to college, marry and have children despite the fact that I could barely move my arms or legs, despite the countless hours of spasms, stiffness and cramping throughout my body. You didn’t stop me, and I maintained a positive attitude and remained a joyful person.

I’m glad you chose me to live so many years with a cerebral palsy diagnosis because now I can share my story with the world. Because of you, I’m helping people, both young and old. My past and current experiences create awareness for parents who are now able to appreciate all the mundane tasks simply because they know I’m grateful for all I can do independently. I love that I can now put clean sheets on a bed, decorate my kids’ birthday cakes, cook meals every night and drive my children to all their activities. Yes, I’m busy and life can be stressful at times, but because of you and my “miracle drug,” I can do it all with a smile plastered across my face.

Dopa Responsive Dystonia, you may have tried to steal happiness from my life, but what you’ve really done is help me realize how wonderful the gift of mobility is. And for that, I thank you!

jeanafter
After diagnosis.

Follow this journey on JeanAbbott.com.

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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Autism, This Is Why I’m Glad You Found Us


Dear Autism,

You may not know me, but I know you. My family and I know you well. You see, we became a member of the developmental disabilities club when I was just 4 years old. We didn’t know Autism. How could the little girl who talked a mile a minute possibly have Autism? How come the little girl who loved to talk with adults just couldn’t seem to understand how to ask other kids to play? Well, I’m here to tell you it’s possible. I’m living it.

Autism, I’m glad you found us. After years of looking for an answer — one we knew existed — you found us. And you began to change our lives.

You make me who I am, along with all the other characteristics that help make me, well, me! But you don’t by any means define me. I’m smart, kind, creative, helpful, loving, caring, honest and so much more. I also have autism.

I’m not going to lie to you, Autism, you make life interesting some days (both good and bad). No day is ever boring. There have been days I’ve wondered, Why? There have been days I’ve wished you away, just because I was so frustrated and confused. I’m sorry for getting frustrated with you. I don’t think I ever really want to wish you away because you help make me who I am, but sometimes I do wish the struggles were easier.

Autism, you’ve opened my eyes and my world to a whole new community of people over the last few years, and I thank you for this. I can’t thank you enough. Autism, you’ve led me to find some wonderful teachers, therapists and professionals, and I can’t imagine not knowing these people. You’ve taught me a whole new vocabulary complete with lots of letters such as, APE, IEP, ISP, PT, OT, SLP, FBA, ABA, BCBA, etc. You’ve taught me to think outside the box, and most of all, you’ve taught me to never, ever give up!

Yours Truly,

Chloe Rothschild

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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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This Is Why Down Syndrome Awareness Really Matters


You hear the word “awareness” a lot (I say it all the time). Raising awareness for this, spread awareness about that — and in the past I would participate in campaigns and show my support, but never really consider what it truly meant. I never really asked, “Why does awareness matter?”

Then I became a mom to a child with Down syndrome.

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All parents worry about their children. They worry about big things and little things — their safety, their health, who they are friends with, who they will grow up to be. I have those worries too, about both of my kids, but in Connor’s case I think I worry most about the world around him.

For Connor, if the community isn’t willing to expect great things from him then his opportunities in life are directly impacted.

I know Connor will be a self-advocate as he grows. He already makes a point of proving me wrong daily. But the reality is he will have to fight harder than most to break down barriers put in front of him by others, even well-meaning people.

There are some common stereotypes and misconceptions out there about Down syndrome, particularly because it is arguably one of the more recognizable disabilities. The problem with these stereotypes is they are often based on outdated information and experiences, and can result in assumptions about what Connor can do, and what he understands. My amazing little boy loves to show off what he can do, but he will perform to your expectations.

Give him a three-piece puzzle and he’ll complete the three-piece puzzle and celebrate with you, because it made you happy. He won’t tell you he can complete a 26-piece alphabet puzzle, understands the letter names and can recite many of the letter sounds. But if he keeps doing three-piece puzzles every day and everyone keeps being thrilled for him, that becomes his limit and he stops growing.

Being a parent of a child with a disability comes down to community. The community of people you love, the network of support around you and your child and the broader “global” community your child will enter, bit by bit, as they establish their independence. We are lucky to have an incredible, supportive network around us right now. One that has grown even more powerful as Connor is able to draw people in on his own (sometimes it only takes one of his infectious, genuine smiles and you’re hooked).

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Fairly or unfairly, Connor’s success is tied more directly to his community and the “global” community than it will be for his typically developing peers. Not because he is a drain on resources, but because others have more control over his access to opportunities.

It is important that those communities are supportive, celebrate his successes and encourage him to do more.

Awareness is about having an open mind and being willing to have what you think you know be challenged. It can be as simple as having a conversation, asking questions, or even just spending a few seconds watching. It can happen in-person, online, in media and by reading something new. Knowledge leads to understanding, which leads to an inclusive world. Not just for individuals with Down syndrome, or any disability, but for everyone. Keep an open mind in all of your interactions and it will not only change your world, but change the world for others too.

So, give Connor the chance to shine, and I promise you he will. See his abilities first and you will be amazed at how far he will go.

This is why awareness matters.

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How Being the Victim of a Crime Changed My Life for the Better


I’m going to start this piece by saying I am South African and proud to be one, but crime is a daily reality in this country.

I work as the communications manager for a national emergency response coordinator comparable to 911 in the US, and because of this I thought I’d know how to handle myself if I were ever the victim of a crime.

I was wrong.

In November my cousin and I were ambushed by a robber as we prepared to leave the house for a business meeting. I was then trapped alone in the car for 45 minutes while the man pushed my cousin from room to room, deciding what he would steal.

Thankfully, when I didn’t arrive for the meeting, my colleague came to the house. This led to our attacker’s arrest, leaving us traumatized but physically unharmed. Aside from psychological counseling, what has helped me overcome the experience is becoming a student of a taekwondo blackbelt named Sean Cremer.

I met Sean several years ago while working as a journalist. Shortly after the robbery, I asked if he could train me because I was resolved never to be helpless again. When I asked, I truly expected Sean to turn me down, because after all, I am a quadriplegic.

To my deep gratitude and surprise, Sean took me on with no hesitation. This got me thinking about the unconscious limitations society places on the disabled, without us even realizing it. In fact, when I told an old friend (who also happens to be a paraplegic) about my training, his immediate reaction was, “But we’re in wheelchairs, we can’t do that stuff.”

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Several months on, I am now confident that in a life or death situation, I could put an attacker down. But training has become about much more than combat. The rigorous exercise has enabled me to get in and out of cars unaided, as well as on and off the toilet.

These were things I used to consider impossible.

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What’s more is I have found a level of camaraderie with Sean and his other students that those unfamiliar with martial arts probably wouldn’t understand. The tenets of taekwondo are courtesy, integrity, perseverance, self-control and indomitable spirit. This group exemplifies these values.

They have shown me that if I have the courage to try, I can go well beyond my own or anyone else’s preconceived limits.

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