When I Heard the Word ‘Autism’ I Only Knew Stereotypes. Here’s What I Know Now.

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“I’m 100 percent certain she’s on the autism spectrum.”

As the doctor said the words, I felt her eyes on me, waiting for a reaction. Instead I found myself sitting perfectly still with a smile frozen on my lips as I watched her play with my 3-year-old daughter.

We were there because Mae had been having stomach problems and seemed to be in pain. When we’d walked in the door it’d seemed like a minor appointment. I wasn’t even sure if we should be there, but it had been going on for a while, and when I called they told me to bring her in.

I didn’t realize that before we walked out of the tiny exam room, I’d hear words that would rock the foundation of our little world.

Autism. I knew stereotypes. I knew nothing.

We stepped outside the doors to find that the world hadn’t come to a screeching halt because of our news. I called my husband. I called my mom. I called the number the doctor had given me. They could see us next week.

In the days that followed I began to keep a list of things to talk about at our appointment. What worries did I have?

Well, she was 3 and didn’t speak. When we were outside, if I let go of her hand she would start to run… and run… and run… without looking back. I was terrified of losing her. She was fearless. She climbed everything. We’d built special baby gates to keep her off the stairs. One was five feet high. It took her about ten seconds to scale it. One day I came into her room to find her hanging from the curtain rod, smiling at me. Oh… and she didn’t seem to feel pain. She’d run into another child while swinging high on the swings at the park and had been thrown a good six feet. My heart was in my throat as I ran to her, but she jumped up and started to giggle before I reached her.

The tests came and went in rapid succession.

I waited for the call that promised to tell me her results. When it came I was standing in the kitchen making lunch. She qualifies for therapy, the voice told me. What’s that mean? I asked. She was undoubtedly on the spectrum, they said.

I leaned against the counter and thanked the person on the other end of the line for delivering the news.

I’d known. But knowing deep down and officially being told are two different things. Suddenly the unknown loomed, larger than life.

People told me nothing had changed. I knew what they meant. My daughter was the same little adorable ball of energy she’d always been. But at the time it felt like everything had changed. I was an introvert, a homebody and suddenly we had doctor appointments and therapy sessions six times a week. What would the future hold?

Fourteen months have passed since we received her diagnosis. Sometimes it feels like no time at all, and sometimes it feels like a lifetime. I still don’t know what the future will hold for us. But that’s OK. No one does. I’ve learned a few things though, since the doctor first said those words that set us off on this path.

If I could go back in time, I would tell myself that it’s going to be better than OK — that it’s going to be amazing. I’d tell myself that there will be days that seem to stretch on forever, but that there will also be days when your heart will feel like it’s going to explode in your chest because you’ll appreciate the wonder of the simplest moments in ways that you never knew were possible.

When she looks at her newborn baby brother and says, “love, love, love” over and over again while touching his cheeks, his mouth, his nose with careful fingers, you’ll savor every touch, every word. When she holds your hand as you’re tucking her in and says, “Happy. Mama.” your heart will overflow with the wonderfulness of the moment.

You’ll also learn that words aren’t the only way to communicate and that sometimes they aren’t even the best way. A word, look, a sign, a gesture — life and the way we communicate will take on the richness of a sort of dance.

If I could tell myself one thing, it would be that you’re going to do so much more than survive. You’re going to love and laugh. And perhaps most of all, you’ll learn that the ordinary will take on an added sweetness and become extraordinary as the smallest moments take on the luminous glow of a hard-won triumph as you watch her grow into the person she is meant to be.

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For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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The Mantra I Adopted When My Son Was Diagnosed With Autism

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DSC_0335bw If I could go back to the day my son was diagnosed with autism, I would tell myself the following things:

1. There will be plenty of time for crying later. For every time he says a new word. For every time he points at something and looks at you for approval. For when he leaps into your bed in the middle of the day and snuggles with you and whispers “Good night.” For every trip to the beach or the pool, when you see the look of pure joy on his face while waves crash over his legs or as his kicks create a wake of chlorinated water behind him.

2. He’s still your perfect little boy. A diagnosis doesn’t take that away from you.

3. It’s not your fault. You didn’t do anything wrong. Because there is nothing wrong with him. He’s who he is. Because even if he flaps his arms and chews on his fingers and walks on his tiptoes until his last days, he’s perfect just the way he is. Let him be who he is, and don’t try to make him into someone he isn’t and cannot be. By all means, help him — provide him with the tools he needs to be his best self, but at the end of the day, accept him.

4. Buckle up, sister. You’re about to become a strange hybrid of a stay-at-home mom/special needs advocate/occupational therapist/physical therapist/speech-language pathologist/special educator. It’s your job to make sure he’s balanced, happy and fulfilled and that all of the therapists and professionals involved in his well-being and education are on the same page as you. Sometimes that means taking matters into your own hands — especially during those long spring, summer and winter breaks from school. Sometimes that means creating living room obstacle courses or bouncing your boy on the couch as you recite the ABC’s, holding him under his arms as you lift him up again and again only to toss him into the stacked cushions at the end of each verse. It’ll keep you young, and your arms will be ridiculously toned. Ah, there’s that silver lining!

5. Invest in lots of carpet cleaner and bubble bath. Life is going to be messy!

6. Your mantra will soon be “Tomorrow is another day.” You’ll say it as you sing a lullaby to your little guy, his sweet smile lighting up the dark room, the air still thick with the day’s accomplishments and progress, as you envision the next day’s triumphs. You’ll say it as you tuck in your exhausted, emotional preschooler, as your tears commingle with his, both of you drained and frustrated and ready to give up and throw in the towel completely. It’s a bit dramatic and Scarlett O’Hara-ish of you, but it makes you feel better knowing you can wipe the slate clean and try again the next day. No one is perfect — the key is that you keep trying. And trying. And trying.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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Watch Celebrities Stammer Through a Tongue Twister to Support a Girl with a Rare Skin Condition

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Sohana Collins, 12, has Epidermolysis Bullosa (EB), a rare condition that causes her skin to burn and tear at the slightest touch, according to Channel 5 News. She experiences unimaginable pain; small cuts or bumps can quickly become blistering third-degree burns, and without eye drops, the surface of her eyes could be torn. 

“To see her do something really normal without pain would be absolutely incredible,” Sohana’s mom, Sharmila, says in the video below.

There’s currently no known cure for EB, but Sohana’s family in the UK has already helped raise £2,000,000 (more than $3,000,000) for research. Now, several notable new faces are backing their cause. Sharmila reached out to “Homeland” actor Damien Lewis, who not only agreed to support the charity but offered an idea to raise awareness for Sohana’s condition by filming himself blundering through a tongue twister. Since then, Sienna Miller, Benedict Cumberbatch and Emma Watson, among others, have supported the campaign on social media.

Learn more about Sohana’s condition and watch these celebs tackle a tongue twister to support her cause in the videos below.

 

To learn more about Sohana’s story, visit the Sohana Research Fund or search the hashtag #EBtonguetwister.

h/t Faithit

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Ellen Has a Sweet Surprise For Girl Fighting Cancer and Her Selfless Best Friend

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When Jesse, from Monroeville, Pennsylvania, read a story in the paper about a girl named Jasmine who was diagnosed with a rare brain cancer in 2011, he decided to write her a letter of support. The two have been best friends ever since, according to the video below.

Recently, Jesse had a Bar Mitzvah where he got $5,000. He donated all of it to Jasmine and her mom, who struggles to pay the bills while flying her daughter to Boston for cancer treatments. To thank Jesse for his act of kindness and to celebrate Jasmine’s strength, Ellen DeGeneres surprised both her guests with a $10,000 check, iPhone 6’s and a visit from the one of the kids’ favorite television stars.

Watch the video below to see Ellen reward these two deserving young people:

h/t GodVine

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New App Allows Strangers to Assist People With Visual Impairments From Anywhere in the World

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A nonprofit called Be My Eyes has created an app that could revolutionize the way we help others.

The app, launched by Danish developer Robocat, allows people with visual impairments to take live video of objects and writing they need help deciphering and send it to sighted volunteers who can describe the objects or read the text aloud, according to the app’s description on iTunes. A person with visual impairments can request help for anything from reading a label to identifying dangerous objects in their surroundings, all using the camera on their smartphone.

The app has been running in Denmark for several months now and so far there are about 700 “helpers” assisting blind users, Gigaom reported.

Apple is planning to feature the app in the App Store which will help to promote it and get more helpers,” Willi Wu, Robocat founder and lead developer, told the outlet. “We are not only looking for helpers, but also blind people so they can get the help when they need it. So we are trying to get the word of mouth out to people who know blind people that could be useful for them.”

Check out how Be My Eyes works in the video below: 

Visit this page to learn more or download the app.

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The Ocean Inspired This Man to Invent Something Potentially Life-Changing for Amputees

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After Randy Lord lost one of his legs from the knee down in a work-related accident, he rose to the challenge of acclimating to the world as an amputee. He embraced using a prosthetic limb, found new ways to exercise and relearned everyday actions such as climbing stairs and driving. But there was one thing he couldn’t do: swim in the ocean. So, he set out to change that.

Because prosthetics and seawater don’t mix, Lord and his wife, Lori, worked to create a swim fin that amputees could wear comfortably in the water, Bangor Daily News reported. They developed a design that fits directly onto the amputated limb, calling it the “Amp Fin.” The Lords claim that single or double amputees can wear Amp Fins in the water all day with no side effects.

When the Lords took Amp Fins to amputee and prosthetist Cory LaPlante, he reported that he could immediately feel muscles working that he hadn’t used in years, suggesting that the fin could also be a valuable tool for physical therapy.

Lord presented Amp Fins on Sunday at a public trial run in at the University of Maine pool in Presque Isle, Maine. “Able-bodied swimmers will have to try and keep up,” he told the crowd, according to Bangor Daily News.

The Lords are currently testing both hard and soft Amp Fin prototypes with five people and hope to have the product ready to market by April 2015.

Watch Amp Fins in action in the video clip below.

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