To My Son With Autism Who Doesn’t Realize He’s His Little Sister’s Hero

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Dear Son,

You probably don’t realize it, but you are someone’s hero.

You earned that title nearly five years ago when you first met your little sister. The baby who was in the NICU for three weeks you waited so patiently to meet. You were only 6 years old, and when I asked you what you thought of the tiny girl hooked up to all the wires and monitors you said, “She’s amazing!”

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Amazing was an accurate description. She had defied the odds. We were told she would likely be “incompatible with life.” Thankfully, she had other plans. She entered the world as a fighter, and that personality trait has only grown stronger over time.

Over the years, your bond with her has strengthened, and it’s easy to see the depth of your love for her. Although she is unable to speak, the twinkle in her eyes and the squeals of her laughter convey how happy she is when you are around. You read your video game books to her and also record your voice onto her favorite iPad apps, giving them a familiar and personal touch. If she is upset, you immediately go to her and try to pacify her. Knowing she can’t tell you what’s wrong, I can see the worry on your face for her.

You are so helpful. When we arrive at school each day to drop your little sister off, you instinctively get out of the car and pull open the trunk so I can remove her wheelchair. Routinely, you proceed to open her car door and ask her if she’s ready to see her friends. Then, you always unbuckle her car seat as I bring her wheelchair around to place her in it. You carry her little pink backpack with “Frozen” characters on it, no matter how much you detest anything “girly.”

Last year, when you attended the same school as her, you would stop by her classroom and remind the teacher to “take good care of her.” If you saw her being pushed down the hallway in her wheelchair, you would run up to her and give her a hug or kiss her forehead. You didn’t care if anyone saw you; it didn’t bother you to show affection to her in front of your friends.

You recently began writing a story about her and her classmates that you want to share with her class. In your story, you refer to them all as superheroes and describe how they have the power to “change bad guys into nice guys.” You tell me with an empathetic heart how these children work hard to overcome challenges and how that also makes them superheroes. You can’t possibly know how proud you make me feel.

You told me once you would like to care for her when I become too old to do so. At 11 years old, you told me she would live with you someday and have her own room in your family’s home. In that moment, I knew with certainty you were wise beyond your years. Your autism spectrum disorder has given you a great, impressive intellect, and you have a kind heart of equal greatness to match. I worry about you, too, just as much as I worry about her. I want life to be wonderful for you, and I strive to make things easier for you. Without realizing it, you do the same for your little sister and me.

Thank you for wanting to be such an integral part of her life. Thank you for being a hero of a big brother.

You are her hero, and you are also mine.

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Why This Photo Is More Than Just a Kid Going Down a Slide

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We have some time before dinner, so we go to the park to play for a little while. All three of us head to the playground equipment. My son, Bubba, is in the lead. I help my daughter navigate the first step, and she quickly lets go of my hand. She walks in the same direction as her big brother, so I assume she’s following him.

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She walks with confidence and determination past the small slides, across the bridge, past her big brother and up the steps of the big slide. When she reaches the top, she gets on all fours at the mouth of a slide. I gasp and yell, “That’s a big one, honey! Be careful! Bubba, go help her!” And before he can get to her, she disappears down the slide. I hold my breath.

In this moment so much flashes through my mind. This is not just a kid going down the slide. Oh no, it’s so much more than that.

It has taken us five years and six months to get here.

It has taken more than 200 physical therapy sessions and almost as many occupational therapy sessions.

Three sets of braces/orthotics.

Hours of cheering her on, holding her hands as she tried to walk or climb and helping her move her little arms and legs to get them to do what is being asked of her.

Countless massages to work out the pain and knots in my back from carrying her ever-growing body, contorting myself to help her with the latest exercises and crawling next to her.

This is the first time she has gone down the big twisting slide on her own.

At this park.

This is the park where we had her 3rd birthday party when she had to use a walker.

This is the playground bridge that terrified her, so she would instantly drop to her knees and crawl on it even after she could walk.

This is the park where I felt judged as an “overprotective parent” countless times as I navigated the equipment with her to keep her safe.

This is where I have spent hours feeling sorrow, hope, jealousy, joy, exhaustion and reinvigoration.

Then she reappears at the bottom of the slide all smiles, and I can breathe again. I offer my hand to help, but she gives me a high-five instead and walks straight back to the steps of the slide. And she rides down it three more times. Bubba cheers then continues to play.

She’s a big girl now and looks (mostly) like any other 5-year-old enjoying the park. And I am standing there, looking like an overprotective mama with tears in my eye, taking her picture at the top of her first big twisting slide. I text the evidence to her first physical and occupational therapists and her daddy. They know the glory of this moment is more than just a kid going down a slide.

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The Note That Helped Pull Me Out Of My Depression

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About a year ago I went off my medicine. I was just feeling so goodish and normalish, I decided it was time to try life again without meds. Sometimes medicine can be used as a life boat to get you from drowning to solid ground. I thought I was on solid ground. So anyway, I went off and had some good months. But then, well, I kind of went downward from there.

It’s hard to explain what it’s like when I slide back into anxiety and depression, but I’ll try. You know how when something scary or really hard is about to happen you feel fluttery, wired and nervous until it’s over? Anxiety is a little bit like that, except “the thing” is never over. The thing is life. And the constant fear, jitters or whatever it is makes it impossible for me to enter the moment. This is the best way for me to describe it — I’m never grounded. Never relaxed. Never present. On stage in front of thousands or in my kitchen talking to my daughter about her day — I am not there. You can look at me and see me, but I’m not there. All my energy/thought/emotion goes into calming my nerves and soothing myself. Anxiety is like a shaky hovering.

Good times.

And depression is like putting a heavy, itchy blanket on top of anxiety. It’s like pouring spilt pea soup all over fear. It’s like a sucking out of the soul. It’s a disappearing act, really. It takes all the colors that a person is and bashes them all together until no color is left at all. All the person is or feels or reflects is gray, gray, gray. There’s not life anymore, just existing.

And I know this. I know this. But it doesn’t matter.

When anxiety and depression first set in, I assumed I was tired. That lasted a week or so. I got extra rest. Then when I didn’t feel better, I switched up my diet. Less sugar usually helps me feel better. I committed to yoga and exercise. I was very tender with myself. I spent a lot of time in bed just babying myself. I read my comfort books. I upped my therapy. I spent a lot of time snuggling my people. Curling up in a ball on my husband’s lap. I reminded myself there are gifts inside these times.

And then after a couple of months, sitting on the couch after snapping at my husband and the kids for the millionth time, I realized I was just gone. I couldn’t feel anything. I couldn’t remember why I loved life or what was special or good about me.  And something about “what’s the point?” made me remember something.

Sometimes I have my “down-self” write notes to my “up-self” to help me with therapy. I also write notes from my up-self to my down-self to remind myself who I am.

So I ran to find my note. This is the one I found.

Note to myself

Don’t be afraid. Remember.

So I called my doctor and got back on my meds.

A few weeks later I was sitting back on that same couch, folding my kids’ laundry and watching some stupid Bravo show  I felt a wave of joy. I love this life, I thought. I love the smell of that incense and I love making these teeny piles of clothes. I love trash TV and I love being alone in this house. And, oh my gosh! Wait, what? Joy? Is that joy I’m feeling? I’m back, baby! I’m back. So I called my husband and then I called my sister and then my parents and said I’m sorry I was gone for so long. I’m back. I’m back now.

So now I’m in the returning part, which has its own challenges. I feel so grateful. But I also feel fresh — new, baby-like — vulnerable, exposed, skinless. Like a soft shell crab that has outgrown its previous shell but hasn’t quite found a new one to wear yet.

For me, these depression times are exactly like an eraser. They come and stay and when they leave, they take everything with them. The only way I can describe it is that I feel totally new — like I’ve forgotten all the wisdom I learned before. Like I’m starting over. It’s a little distressing for a writer. I don’t know anything again. It’s like spiritual amnesia. I’m Dory from “Finding Nemo”: Wait! Where are we? Hold on: Here I am and I swear I knew some things yesterday! What were those things! Oh, who cares! Look! A whale!

I hate it a little bit. I feel untethered. But when I talk to God about it, when I say to God: What’s the deal with all the erasing? God says: Honey, take heart. I’m doing a new thing.

And when I say: But I worked so hard to know all those things, God. And it’s my job to know things. People line up to hear me say things I know

God says: Silly. You know nothing. You don’t teach by knowing, you teach by loving. You can do that. They don’t come to hear what you know, they come to hear your awe. And awe comes from having childlike eyes. Fresh. Post-erased eyes.

Beginners mind, they call it. Depression leaves us no choice but to begin again and again and again with beginners’ minds and eyes and ears and hands. Depression leaves no room for pride. What a beautiful thing.

This piece was originally featured on Momastery.

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8 People Who Prove Having Depression Doesn’t Make You Lazy

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What you think of someone who experiences depression, who do you see?

Is she locked up in her room, shades down, watching soap operas? Is he finishing a carton of ice cream and writing sad poetry in a diary?

Whatever the stereotype, the truth is this: Approximately 6.7 percent of American adults − about 14.8 million people − live with major depression, and about 19 million experience depression in any given one-year period.

But having depression isn’t an indicator of whether or not you will succeed. Millions of Americans aren’t hiding in their rooms. Here are some badass, accomplished individuals, who also happened to have experienced depression.

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1. Jon Hamm

In 2010, the “Mad Men” star opened up about his experience with chronic depression. “I did do therapy and antidepressants for a brief period, which helped me,” he told The Observer. This year, Hamm finally won in Emmy for his portrayal of Don Draper, a successful advertising man with a dark past.

 

 

 

 

2. Amanda Beard

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She’s a model, swimmer and seven-time Olympic medalist. She’s a former world-record holder in the 200-meter breaststroke. She made her first Olympic appearance at the age of 14. She’s also experienced depression and lived with an eating disorder.

Her husband Sasha Brown helped the athlete reach out for help. “I always thought if someone saw my true colors, they would just turn away,” Beard told MLive. “He didn’t. He was very loving and supportive.”

Her memoir, “In the Water They Can’t See You Cry,” chronicles her journey with mental health issues.

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3. Philip Burguieres

As one of the youngest CEOs ever to run a Fortune 500 company, Burguieres actually resigned because he feared the stigma around mental health problems, according to PBS. He never used the word “depression” when explaining the situation to his peers, and the cause of his resignation was cited to unspecific “health problems.” Even doctors blamed his experiences on the job or “situational stress.”

But it really wasn’t just the job, and it wasn’t just stress,” Burguieres told PBS. “I think my major episode was really the culmination of undiagnosed depression, a condition I had been fighting for years.”

He eventually made a full recovery and re-entered corporate life as vice chairman of the Houston Texans.

Screen Shot 2015-10-15 at 11.57.35 AM 4. Stephen King

Author of “IT,” “Carrie,” “The Shining,” 51 other novels and nearly 200 short stories, King has dealt with both depression and addiction. “There were nine months when I was out of gas, depressed,” he told The Guardian. “And despite what some people say, depression is not conducive to good writing or to bad writing,”

 

 

Premiere Of New Line's "A Nightmare On Elm Street" - Arrivals 5. Kid Cudi

The rapper has been open about his experiences with depression and suicidal thoughts in both interviews and in his music. “I know what that feels like, I know it comes from loneliness, I know it comes from not having self-worth, not loving yourself,” he said about experiencing suicidal thoughts to HipHop DX. In a genre that typically doesn’t address issues of mental health, he’s a two-time Grammy award winner.

 

 

 

Screen Shot 2015-10-15 at 12.09.07 PM 6. JK Rowling

The creator of the beloved Harry Potter franchise was actually experiencing depression when she wrote, “Harry Potter and the Sorcerer’s Stone.” These dark times manifested themselves in the one of the mystical creatures in her series, Dementors, hooded creatures who feed off happiness.

 

Opening Ceremony And 'The Great Gatsby' Premiere - The 66th Annual Cannes Film Festival 7. Cara Delevingne

Model and actor Cara Delevingne experienced depression during her rise to fame. “[In my] external life, I couldn’t be luckier or more blessed,” the 23-year-old said in an interview at the Women in the World summit. “But internal battles were going on. I also felt like I never deserved [the fame]. That I was living someone else’s dream.”

Most recently, Delevingne starred in “Paper Towns.

 

 

8. Sarah Silverman 

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The comedian recently opened up about depression in a personal essay in Glamour magazine, where she discusses first experiencing the symptoms at age 13. “I went from being the class clown to not being able to see life in that casual way anymore,” the essay reads. “I couldn’t deal with being with my friends, I didn’t go to school for months, and I started having panic attacks.”

She began recovery, got hired as an writer-performer for “Saturday Night Live” at age 22, but relapsed again soon after.

Since then I’ve lived with depression and learned to control it,” Silverman shared with Glamour, “or at least to ride the waves as best I can.”

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Woman With Partial Paralysis Ignores Naysayers, Becomes Aerial Acrobat

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Lauren Watson was told it would be impossible for her to participate in aerial acrobatics because she’s partially paralyzed. She didn’t listen.

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Watson, from the Gold Coast of Australia, was in a car accident in 2000 that left her partially paralyzed from the waist down, a condition known as incomplete paraplegia.

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Since then, Watson started and stopped physiotherapy many times, but it never made her happy. Then, she discovered aerial performing.

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I needed something fun and exciting to challenge me to move my body and that’s how I stumbled on aerial and thought, ‘What is more challenging than a person hanging upside down from material rigged from the ceiling who can only use half of their body?'” Watson wrote on her blog.

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Watson spent months trying to find a place that would teach her, BuzzFeed reported. Finally she found Industry Aerial Arts. She spent the next six months just trying to drag herself into a standing position on one leg, but she never gave up.

I thought, That has to be impossible,” Watson told BuzzFeed, “but if I can master it I’ll be able to do anything.”

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When Watson asked her physiotherapist for leg-strengthening exercises to help her perform and was told it wasn’t achievable, she became even more motivated to accomplish it.

Now, two years later, Watson has achieved a lot. She’s performed with Australian specialized aerial training and stunt school Flyworx, was featured in a music video for Sydney band Little Fox and has a large social media following on Facebook and Instagram.

Check out the compilation video below of Watson spinning while doing aerial.

 

Spinning mashup for Instagram. I remember the first time I had to spin – I hated it. I got sick every time and tried everything; ginger, motion sickness bands and tablets until i discovered a few secrets. Check out my blog post for some tips in the air! (Shots taken at Industry Aerial Arts – Director Tammy Zarb, Vulcana Women’s Circus and AP8)http://fitnesstofree.com/2014/09/13/spinning-how-not-to-get-sick-doing-it/

Posted by Lauren Watson – Adaptive Artist on Sunday, August 16, 2015

 To see more of Watson performing, visit her Facebook page or Instagram.

Front page photo credit: Provoke Magazine via Instagram

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To United Airlines, From the Mom of 2 Toddlers With Special Needs

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To United Airlines,

My husband and I are lucky enough to be parents of two toddlers with special needs who fill our days with so much joy. These kids have overcome incredible odds just to survive, and they deserve everything we can give them and more.

We’ve never considered traveling without them. Traveling is such an important part of who we are as a family, and they deserve to be a part of that. They deserve to see far-away friends and family, to explore new cultures and to get away from the stress of daily therapies and medical appointments. It never occurred to us that travel should only be a privilege of the able-bodied, until we attempted to check in for a flight with our children and no one would help us.

In August, my daughter and I embarked on a mother-daughter trip to Seattle. Because I was traveling alone with my 22-month-old, I wanted to make certain I had everything I needed and was adequately prepared. Before our flight, I spent countless hours researching the best way to prepare for air travel with children who have special needs. Then I spent even more hours getting letters of medical clearance and equipment specifications from doctors and specialists. I also called United to alert the disabilities desk that we were traveling with medical equipment and would need to check medical supplies, and I called TSA to be assigned a passenger support specialist who would help us get through security with the medically necessary liquid. Then I printed medical alert tags for our bags.

But when I attempted to check our boxes for the flight, United Airlines agents treated me as if I had made a terrible request. My daughter and I were forced to go person to person, line to line, with each person directing us to the next person in the next line until I ran out of people to talk to. I honestly didn’t know if they were going to let us check our supplies. Finally, a supervisor allowed us to check some but not all of our supplies. She made me carry a heavy box of my daughter’s prescription formula through the airport, despite the obvious fact that I was traveling by myself with a toddler and a bag of supplies she would need in-flight. I got the clear message no one wanted to deal with me or my child, but I optimistically hoped this experience was uncommon, perhaps just a group of employees who had a bad day.

Sadly, that optimism was short-lived. Fast-forward a month later, my husband dropped me off with both of our young children to check in for our flight to Dallas. Bags packed, car seats loaded, documents in hand, babies snuggly and happy, I thought we were ready to go. I walked up to the first desk agent and, using language carefully selected from the United website, I let them know I needed to check two bags of medical supplies. “You what? Talk to that guy over there.” So I stood in that line and got an even more confused reaction: “You have to check in at the kiosk.”

Once again I was directed to multiple other people before taking my cart full of luggage, a car seat on wheels, a baby in a stroller and a baby in my arms and chasing down an airlines agent. He didn’t know how to help me either, but at least he tried, perhaps because tears were filling my eyes and I was alone with a parade of baggage and babies.

He found someone who did help me, but it shouldn’t have been this hard to check medically necessary equipment. Can you comprehend the stress of traveling with children with medical needs in the first place? Looking back, I still can’t figure out if all those other agents didn’t know how to help me, or if they didn’t want to. Could they really all be so untrained that they don’t know how to check a bag of medical supplies? Or is it so complicated that they didn’t want to deal with it?

After all I had done to prepare, how could I have been left feeling so helpless and frustrated? Considering how much liquid I needed to carry on, I thought getting through security would’ve been the challenge, but that was a breeze because the TSA agents were skilled and knowledgeable about traveling with special needs. I wish I could say as much about United Airlines.

I share our story to ask you to resolve this before my children are old enough to realize their medical needs are the reason they’re being turned away from each desk. Traveling shouldn’t be a luxury afforded only to children without disabilities simply because United Airlines doesn’t want to deal with them. I never want my children to feel they are a burden or a problem, which is exactly how you made me feel.

Until you resolve this, the only way I can assure my children will not be sent this devastating message is to never fly your airline again, and I will continue to advise all other special needs parents to do the same.

Sincerely,

The special needs mother you left with a baby in her arms and her eyes filling with tears in the middle of an airport because no one would help her — twice.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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. Check out our Share Your Story page for more about our submission guidelines.

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