When a Little Boy Asked, ‘Is She Still Autistic?’

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I had a great, albeit brief conversation with a 7-year-old about autism this week. We were at a small gathering with the kids from my daughter, Little Bird’s old school. As soon as we got there, LB and I headed down to the basement to where all the kids were playing. There were three boys and one girl, LB’s BFF, a typically developing, stunning sweetheart who happens to have brothers with Fragile X.

We reached the bottom of the stairs and one of the boys said, “Hey! {Little Bird} is here! We need to be extra careful now!” On the one hand, I really appreciate that he was looking out for her, but on the other it makes me a little sad. Then, it happened:

Boy: Is she still autistic?

Me: Yep! Hey, do you still have brown hair?

Boy: Ummm, yeah. Maybe you should give her an operation so she’s not autistic anymore.

Me: But why would I want to do that? We love {LB} just the way she is! {LB’s BFF}, don’t you love her just the way she is?

Girl: Yep!

Another boy: I like her, too!

Boy: But if she isn’t autistic, she could do more things like have sword fights and fencing!

Me: Well, sword fights aren’t for everyone. Plus, you know there are a lot of things that she can do.

At this point, he went ahead and had a sword fight with the air. Then a little bit later, he came back to me…

Boy: Were you autistic when you were a kid?

Me: Nope. But you know what I was? Short! I’m still pretty short, huh?

Boy: Yeah.

Me: Yep, and I’m okay with that.

Little Bird was having a rough time there and we left with her in snotty tears, which always sucks. That doesn’t happen a lot, but it does happen — the whole leave-before-the party-is-over (or sometimes even getting started), knowing-that-the-“normie”-parents-are-feeling-sorry-for-me thing.

Still, I define this experience as a success. I was reminded that kids are curious, they want to know about autism, and they have questions. So, parents, let’s answer those questions. Let’s pounce on these teachable moments. Not only are these kids the peers of our babies, but they’re the future advocates. I believe the children are our future. Teach them well and let them lead the way.

Including our children in activities with typically developing peers and educating those neuro-typical kids is the biggest and best anti-bullying campaign I can think of. What a great way to raise emotionally intelligent and compassionate kids. So, do you want a play date?

This post originally appeared on I’m Just That Way.

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A Letter to the Disease That Tries to Cut My Life Short

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Dear Muscular Dystrophy,

What doesn’t challenge me doesn’t change me. Boy, have you changed me. But to be honest, I don’t really think about you all that often. I can’t even really be mad at you at this point. After all, we grew up together, and I’ve never known life without you. Certainly you’ve made most aspects of my life more challenging, but if life were easy, it wouldn’t be interesting. The low points in life are what allow me to fully appreciate the small things.

You’ve made all physical aspects of my life a challenge. You’ve taken away so many of my abilities. You took away my ability to walk, then my ability to stand and now the use of my legs altogether. You’ve denied me the ability to sit up straight. You’ve stolen from me the possibility of ever feeding myself again. You’ve humbled me by forcing me to ask for help to use the bathroom. You literally leave me short of breath. Recently, you tried to stop me from ever eating solid food again.

But I can — and do — live without all those things. Despite taking so much away from me, in a lot of ways you’ve also given me things for which I’m grateful. You’ve changed my overall attitudes and outlook on life. I appreciate all things so much more than I probably would if you’d never come into my life. You allow me, sometimes force me, to live in the present and be thankful for each and every moment. Because of you I know I need to treat everyone with a high level of respect. You’ve helped me reach out and find people who probably wouldn’t have been in my life without you. My caregivers, my tutors, my physical and occupational therapists, my doctors, just to name a few. You’ve blessed me with the ability to trust, since I must rely on others for every single aspect of daily living.

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Sometimes you really scare me. You almost killed me a few times — one time in particular. You stopped my heart and convinced my doctors you were going to end it all. They even started telling my parents to plan for my death. But I wasn’t going to let you off the hook that easily. I fought back. And I’m going to continue to do so; I don’ care how you feel about it.

So overall, Muscular Dystrophy, we might as well get used to one another because we’re not going anywhere anytime soon without each other. This isn’t going to end. And who knows, maybe one day somebody will find a way to get rid of you forever. Wouldn’t that be incredible?

Sincerely,

Gabe

You can read The Mighty’s story on Gabe here.

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 Children’s Hospital Just Pulled the Cutest April Fools’ Prank

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Well, this is the most adorable April Fools’ prank we’ve ever seen.

To bring smiles to a few faces, Children’s Healthcare of Atlanta‘s service dogs have taken over the hospital’s social media accounts.

The precious pups started posting on Twitter, Instagram and Facebook on Wednesday, April 1, as they went about their therapy dog duties. We think the stunt is pretty (p)awesome.

Check out some of the shenanigans they’ve been up to in the photos below: 

Check out CHOA’s last photo project: Dreaming NICU Babies.

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Dear Health Insurance Company: Here Are 7 Ways I’ll Make You Rich

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Hi Company,

Listening? Would you be if this were titled “I Want to Help Give Your Customers What They Need”? Truth is, you’ll be more lucrative if you provide the best care — aka, treat customers like humans and allow them the right treatment. This isn’t a joke. Here’s how. 

1. Good customer service and healthcare means more business. Instead of being at the helm of your customers’ horror stories, you’ll be getting rave reviews. Self-explanatory. 

2. If you stop being stressful, your patients will be healthier. Poor service is making your customers sicker. I’ve collected salivary cortisol samples (stress hormones) in lab studies where subjects were exposed to less maddening scenarios than dealing with you, and their cortisol levels still surged. Chronic cortisol levels are associated with a host of conditions. Learn about allostatic load. A lack of control over health, work and ensuing financial strains are correlated with heart disease.

You’re a master of stress. From coverage denials to calls that get disconnected (me giving you my number in case we get cut off, and you saying you can’t take it. Then me saying, Can I have your name? and you saying you don’t have an extension). Your representatives hike blood pressure, heart rate and cortisol levels like it’s their job.

3. Stop rigid “customer satisfaction surveys.” You called my father about a specific call. He asked, Which instance? He’s been on the phone so much regarding his wife’s multiple sclerosis, he couldn’t pinpoint one. When he tried to get into a new inquiry, the rep asked him to recall an old date, prompting more scripted, robot questions. He proceeded to lash out at you. Your protocol brings out the worst in people.

4. Listen to more stories from customers. I woke up the other day thinking, “Good thing I have a treatment this week!” While standing in CVS on the phone with you (about a whole other issue), I triple-checked that my appointment was all set. You told me the infusion didn’t have prior authorization (the infusion center told me it did, so I had to play middleman today). I was then told another medicine is “not the preferred medicine.” Oh, but my body prefers it, and that’s where it’s going. Why throw a wrench in a regimen I’ve carefully titrated for years?

5. Listen to what the doctor is prescribing. Let’s not go with the mystery drugs. My sensitive body may have a reaction to the drugs you want me to have. Then I’ll have to get pumped with drugs that combat the reaction — you know what that mean$. Got your attention again? Think of it the way you understand: new mystery drug means more money for you when complications come. (OK, just learned you’ll let me have my “preferred meds” after I hit my high deductible. Fine, I’m willing to spend a ton now if you let me have what I need later.) 

6. Don’t be shortsighted about “unnecessary treatments.” Sometimes procedures that manage symptoms and cancer risks are “unnecessary,” and only emergencies are covered. Think big and practically — emergencies are more costly. And remember there’s a human who’s enduring the complications you’d then be paying for.

7. Know who to listen to about your business. I don’t hate you, Insurance Company. I want to help you, help them. I don’t need to do this muckraker journalist style. It’s no secret there’s muck, I won’t expose every maddening instance of it. You want to spend less money on me, and I want to be healthy. If my doctors suggest treatments they know will do that, please let me have it.

My desire to help make your customers less stressed and given the best health treatment will raise your profits longterm. Let’s help each other. Maybe we can be friends. 

Sincerely,

Angelica, your new sugar momma
[email protected]

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The Tattoo That Gave Me Strength After My Mastectomy

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On April 25, 2013, I was diagnosed with breast cancer after a routine mammogram. The news hit me like a left hook. I was shocked, numb, scared. Immediately, I felt like a victim.

Next came a surreal swirl of events: a mastectomy, reconstructive surgery, then a horrible infection that delayed my chemotherapy. The tissue expander they’d inserted to begin the reconstruction process had to be removed. Instead of a perfect fake breast, I had a concave, empty space where Leftie used to be. I looked even more battered and defeated, instead of like the Amazon warrior I needed to be.

But I had more important things to worry about. Like not dying. Even though I was Stage 1 and my chances of survival were 86 percent, I obsessed about my 14 percent chance of not living through this ordeal. I adopted the Alcoholics Anonymous “one day at a time” credo, determined to wake up each morning and make it through the next chemotherapy infusion, the next doctor’s appointment.

By some miracle, I did.

As I write this, I’m 15 months post-chemo. My hair has grown back. I’ve become less afraid and can live my life in more than one-month increments — planning any further than a month in the future used to make me hyperventilate.

But I’m faced with a new reality, with a different woman I see in the mirror. A damaged woman. A jigsaw girl with a missing puzzle piece. A woman with a divot and a jagged scar where her left breast used to be.

I tried hard to convince myself to revisit plastic surgery, but the thought of it made me extremely anxious. Would I get another infection? Would they be able to close me up this time? Would I be able to weather at least two more surgeries and the painful months of the reconstruction process?

My answer was no. I couldn’t. I wouldn’t. I didn’t want to. But still, there was that broken woman who stared back at me in the mirror with a slouched, almost apologetic posture.

After much soul searching and deliberation, I decided to turn a negative into a positive. I decided to turn my scar into a badge of survival. I decided to get a tattoo.

I surfed the Internet, combed through Pinterest, Babble and Instagram. While my 14-year-old son suggested a dragon (at least, to him, I was a fierce cancer warrior), I sought something more symbolic. You see, I was diagnosed in the middle of cherry-blossom season. Soon after receiving that terrible news, I remember standing in the Brooklyn Botanic Garden, looking up into a canopy of vibrant pink and wondering if I’d ever see another spring.

I decided my tattoo would be a cherry blossom branch that not only traced the lines of my scar but embraced it. I just had to find a tattoo artist willing and able to help bring my vision to light. I began shopping in a field that men dominated Besides someone with talent, I needed someone sensitive to what I’d just gone through. I needed a woman.

I found just what I sought in the skilled hands of Gen “Pistol” Gordon of Guts’n Glory Ink in Rosendale, New York. I knew it the minute I walked into the shop, which was bright, airy and inviting. Maybe it was Sagan, the cool pooch who stood guard. Maybe it was Gen herself, a School of Visual Arts graduate and self-described nerd, who resembled Bettie Page’s adorable, slightly bookish younger sister. Maybe it was the way Gen looked at my scar without disgust or the way she touched me, softly yet solidly. I was no longer a cancer victim. To Gen, I was a flesh canvas that she could transform into something beautiful.

On September 27, 2014, I began that transformation. Gen created an exquisite custom-drawn cherry blossom branch, using the pictures she’d taken with her iPhone for reference. Gen transferred the design onto a stencil and gently pressed the stencil to my chest, warming it with her hand so it would take better. When she began tracing the outline with her tattoo needles, I felt little pain — more than 18 months later, my scar was still numb. What I did feel was a metamorphosis.

I thought I would cry; I didn’t. Maybe I’d cried enough. Maybe I was done crying.

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After the first tattoo session, Gen and I were only halfway done. She didn’t want to overly traumatize an area of my body which had seen enough trauma. A bold black outline masked my scar, snaked around it, defied it.

Even with my tattoo half finished, I felt differently about myself. Maybe it was my imagination, but I began walking taller. I began to feel more sensual. I had a secret under my shirt that few people besides my husband, me and Gen would probably ever see in person — but it made me feel almost whole again.

On October 18, Gen finished my cherry blossoms. I’d turned 55 a few days earlier, marking two birthdays since my diagnosis. It seemed a fitting gift to myself. I stared in disbelief at the reflection in the tattoo shop’s mirror. A strong, yet delicate branch, bursting with persimmon-colored flowers caressed my mastectomy scar, symbolic of my rebirth. It gave me strength. It gave me ownership. It gave me hope.

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People tell me I’m an inspiration. That I’m brave. That I’m awesome, cool and gutsy. Mostly, I tell them I’m a little bit vain. I just got tired of looking at my scar in the mirror — and decided to do something about it.

This story first appeared at Ravishly.com, an alternative news+culture women’s website. It’s also appeared on Better After 50. More from Ravishly:

How I Learned To Get Naked With Strangers Again After My Mastectomy

Fatal Brain Candy: How Prescription Pills Almost Killed Me

Being Thin Didn’t Make Me Happy, But Being “Fat” Does

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Why It’s OK That My Sons Don’t Always Love Their Sister’s Autism

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I recently came across an online journal dedicated to people whose lives have been touched by a wide variety of disabilities. As the parent of a 13-year-old with an autism spectrum disorder, I found it inspiring and empowering to read one uplifting story after another about how this or that diagnosis has turned out to be a gift —  and how the writer wouldn’t change a thing about the person they love… or their own condition. I’ve even shared a few of our own stories about my daughter, Erin – the perspective she gives and the exceptional people who have come into our lives as a result of her disability.

Many individuals with more mild forms of autism embrace their diagnosis, reject the term “disability” and instead celebrate the uniqueness it’s bestowed upon them. If given the choice, Temple Grandin, autism’s unofficial spokesperson, has said if “I could snap my fingers and become non-autistic, I would not.” She asserts, and rightly so, that she is “different, not less.” 

As the autism community prepares to kick off Autism Awareness Month with a celebration of World Autism Day on April 2nd, I wonder, however, if in embracing and spotlighting the many positive sides of different, we’re somehow rounding off the edges of this neurological disorder in a way that makes it difficult for some to say this is actually not so fabulous. I’m quite familiar with a few who feel this way.

If my sons could “snap their fingers” and change their big sister’s disability, they would in a heartbeat. They ask me all the time if there will ever be a cure for autism.  

Last fall a close family friend received a cancer diagnosis. But it was thankfully caught early and after aggressive treatment, she’s now cancer free. My boys promptly asked if we could do something like that for Erin.  

They love their sister, but they don’t love that she has autism. 

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It’s not funny for them when she has a meltdown in a public place. They don’t like that she can’t dress or care for herself. That she screams through a shower. That she often gets into their stuff and writes on their books or tears up a poster or important school form. That she reads to herself rather loudly regardless of whether they’re watching a movie or game and the score is tied with ten seconds left. That she takes up so much of Mom’s time and attention and thoughts and concern.

“You love Erin the most,” I’ve heard more than once — though generally when a demand has been placed on them and not her.  

They get embarrassed and frustrated and scared about what the future holds for her and them. Where will she live? Who will take care of her? Will she go to college? Will she get married?  

When my oldest son was in kindergarten and had a friend over for the first time, he prepped the playmate with a long list of potential pitfalls: “I just want to tell you that my sister has autism, and she might jump up and down in front of the TV or spill her juice or scratch you. Oh and she eats her pizza backwards!” (The friend, undeterred, happily entered the house and a rather uneventful playdate ensued.) 

Insecurities aside, I like to think it’s their love for her that makes them hate her diagnosis. They would like to see her live a typical life — or rather, a life just like theirs. She should be running off to practice and studying for the next big test alongside them. Helping them navigate social media. Sharing their inside jokes. Snickering at inappropriate movies as opposed to “Barney” re-runs.

I know if Erin were typical there’s no guarantee there’d be this rosy relationship and life would be all milk and honey. There would be other hurdles and issues. I’m sure there are still plenty ahead.  

I’m also well aware that some people with autism or who have children with autism feel that they have been blessed and given a window into a special world — a world they would never have known if they had not been born with their disability. There’s no denying that.

And while this is true to an extent in our home – yes, Erin has taught us to smile, to hug and to love unconditionally – if her brothers could alter the conditions of her life – remove the impediments – I know they would.  

As much as I want them to accept and embrace what life gives, I don’t want them to feel guilty for wishing that Erin could tie her shoes or write her name or talk to them about how Mom or life can be so mean and unfair and yes, even fun, sometimes.  

I want them to know it’s OK to love their sister, while not loving that she has autism.

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The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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