A Letter to Alaska Airlines From an Autism Mom

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Dear Alaska Airlines,

This thank you note is overdue. I meant many times to sit down and write it, but life with a 6-year-old and 4-year-old took over once we were home, and I never did. However, given the awful experience that a fellow Oregon family just had with United Airlines asking them and their daughter with autism to leave the plane on a flight home, I felt I must write and thank you.

I must let you know that, recently, my family was almost that family. Except we had the benefit of dealing with you and your employees, who handled things much differently.

When Autism Spectrum Disorder families read about experiences like the one that occurred recently on United, they can feel dismayed, like this is just our lot in life. Our struggle will be met with intolerance and impatience. People should know it isn’t always so. People should know it doesn’t have to be like that.

In February, we surprised our two children with a trip to Disneyland. We had a lot to celebrate. Our oldest, who has high functioning autism, had been doing very well integrated into a regular classroom for both his kindergarten and first grade years. And our youngest son had been home with us from China for a year. We were celebrating his Gotcha Day and Adoption Day at Disneyland. With so much spent on our son’s therapies and the adoption, we don’t have the finances to travel much. And with my husband being in the military, we wanted to make this trip before he deploys again. This vacation was a big deal for us.

My oldest had flown several times before. The idea of flying in the airplane scares him, but once we’re in the air, he sees it’s all right and relaxes. In the past, he’s merely repeatedly expressed his desire not to fly to me (at a conversational volume) during boarding, had a white knuckle grip on me during takeoff, and then relaxed once we were in the air. He’s usually content to pass the flight time reading or drawing, as long as he can feel secure keeping his seat belt securely fastened, and I don’t get up without him. We’ve been lucky. Although my son has many sensory issues and anxieties, flying has gone well for him.

Which is why, when he had a panic attack on the plane from Portland to L.A., we were completely caught off-guard. We had just boarded and sat down when he began to cry and say, “Mommy, please tell them I can’t fly. Please tell them I have to get off the airplane.” Over and over. Quietly at first, then increasingly not so quiet. My husband and I both were explaining to him it was all right to be afraid, but that he couldn’t shout. He was in a window seat, away from the other passengers, and we kept him to a somewhat “reasonable” volume, but he was shaking himself in his seat and no doubt disrupting and unnerving other passengers.

I apologized and explained to those closest to us that he has autism and was scared, but would be OK once we were in the air. Most seemed very understanding, but I could feel everyone’s tension. As for me, I felt sick with worry and guilt that this was so much harder for him than we expected, and that we were responsible for the disruption of our fellow passengers.

When Ken, who was the head attendant on the flight, asked to speak with me for a moment, I was not surprised. He was just doing his job. But it was the respect and graciousness with which he did his job that was so important. He quietly led me to the back of plane to inquire about my son. The very first thing he said to me was, “I’m so sorry. I know the person that this is most hard on is you and your family. But I have to ask a few questions so we can assess if we’ll have a problem in the air.” Which was completely understandable. He asked if my son had flown before, how that had gone and what was my best guess on what would happen if we proceeded, since “you know him best.”

After I answered his questions, he thought for a moment and said, “OK, let’s do it.” My son continued to appeal to all of us that he could not fly until the pilot hit the accelerator down the runway. His cries abruptly stopped and he said, “Oh, we’re going really fast.” The minute he felt us lift off, he said, “Woah. We’re off the ground. I was scared, but it’s better now.” I saw a lady seated near us smile and do a small fist pump in the air in celebration for us. I saw everyone else visibly relax. It was going to be all right. A little while into the flight, Ken quietly came by with two kids meals in Disney boxes, one for each of my boys. Just to celebrate that we had done it, and were actually on our way to Disneyland! I was so grateful and relieved, I wanted to cry…

And that was that. We had no more problems on that flight to Disneyland, nor did we have any on our return flight. Having just done it days before was enough to give my son the confidence to do it again. And our time at the Happiest Place on Earth was exactly as advertised. But we wouldn’t have gotten there at all if it wasn’t for Ken and the folks at Alaska Airlines. Because it so easily could have gone the other way.

So thank you. Thank you for making our experience so different. People should know there is help and hope out there.

Thank You,
A Very Grateful Mother

Related Story: Police Escort Teen With Autism and Her Family Off a Plane

Related Story: Dear Mom Who Was Kicked Off the United Airlines Flight

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When a Stranger’s Question About My Son Brought Tears to My Eyes

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So last week, Romi and I went to grab some stuff — cough-cough, five boxes of frozen pizza with spicy olive oil, cough — at Trader Joe’s.

The Portland store — besides having a microscopic parking lot that brings on the anxiety of musical chairs from my preschool days — is flanked to the left by a loading dock, complete with a gigantic roll off dumpster that you can actually see inside. This delights Roman, and he runs ahead.

Trailing by a few steps, I see him excitedly jumping, finger pinching, then (sh*t!) start talking to a stranger. Lest you forget, the grocery store is where all the most “helpful” strangers gather to pass judgment on your ill-behaved child and on your inferior parenting skills. I steel myself.

Roman’s unwitting victim is a middle-aged woman, caught mid-step, ensnared in Romi’s world of hydraulics, construction vehicles, conveyor belts and trash. Romi touches her arm, talks rapidly about an orange garbage truck, which I know he desperately wants for Christmas, even though he already has two green ones. But she has no context and zero idea what he’s saying.

I see her familiar, scanning head turn as she wonders, “Is this child possibly here alone?” A weak smile on my face, I step in, catch her eye and nod, wordlessly reassuring her that I’m here — she can go. Instead of leaving though, she lingers, listening to Roman. My hand on Roman’s shoulder, I quickly say, “Sorry, autism,” feeling like a traitor for slapping a label on him like that. But here again, I’m expecting her to make her escape, because this is where most people reply with a weird “that’s OK” as if it weren’t and lumber off to their more normal lives.

Instead, she looks right at me, or through me, it seems, and asks, “How can I help?” Bewildered, I stare back. “Pardon me?” She slows her speech, kindly repeating, “What can I do now to help him?”

Tears immediately well up in my eyes, and I look down at Roman to hide my emotion. “Honestly,” I say, “I’m not sure. No one has ever asked me that.” Incredulous, she responds, “Really?” Um. Yes. 12 years of yes.

Weightless, my self-consciousness lifted, we form a little protective barrier around Roman. Both standing there, me with my arm around my little guy, listening to his scripts and animated dumpster speech. When he starts to slow down, I smile and say, “Hey, Romi, let’s go get a cart so we can get our shopping done.”

Trance broken, I awkwardly say to the lady, “Well … thank you.” And I hustle Roman away before my tears drop. Because even though this whole episode lasted no more than a minute, Roman is settled. His humanity validated by the undivided attention of a stranger, he’s ready to go get some pizza. Right after mama visits the chocolate aisle.

This post originally appeared on Kid Gigawatt.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? 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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When Taylor Swift Saw Me as More Than a Fan in a Wheelchair

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Dear Taylor,

I hope you remember me, even just a little.

I want to thank you again for you and your music. You’ve had such a positive impact on me. You’ve given me such strength and inspiration through my hardest times and challenges in life.

I was born with cerebral palsy. So I’m especially grateful for the memory in the picture below because you were so kind to me and treated me like my wheelchair didn’t matter. You treated me like I was a friend.

That’s something not many people do.

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Photo via Nicole Punzo

Usually, people shrug me off.

More people need to be like you.

There were times in life — too many times — especially throughout the last 18 months of fighting a skin infection in and out of the hospital, where I wanted to give up and let the darkness win.

But I didn’t…

because of the memory in this picture…

because of your kindness…

because of your wonderful music.

I want you to know how much you’ve meant to me. Because of you, I’m still here trying to rebuild my life.

I love you, and I can’t wait to see you on July 11 on your 1989 World Tour — my sixth show of yours.

Love you,

Nicole

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Thanks!

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10 Simple Ways People Rocked My Special Needs Parenting World

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When I was a little girl, my mom and I would get up early most mornings to read the Bible together. I always loved the stories in the Old Testament of battles and heroes and romance. I pictured myself as Esther speaking for her people, Deborah leading the armies into battle or Rahab saving the spies.  In my daydreams I was the biblical version of Wonder Woman, stepping up and saving the day when the men failed to get the job done. These days I’m too tired to play warrior princess. Since my daughter Alyssa got sick, another Old Testament story has resonated with me though.

In Exodus 17, we read a story about a battle the Israelites fought. In this particular battle, the Israelites prevailed as long as Moses held up his hands, but he grew tired as the battle raged. His weary arms started to sink; the enemy grew stronger. Seeing this, Aaron and Hur found a rock for Moses to sit on. Then they did something that changed the course of the battle. They stood beside Moses and held his arms up.

Parenting in general is hard work, but when a child has special needs it can start to feel like an impossible task. There are so many appointments and emergencies and daily trials — it’s enough to make your head spin. Ironically, as the world implodes and we need help the most, many special needs parents find their support systems dwindling. Some people choose to abandon us because our new lives don’t fit their sense of perfect. Some shrink away in fear that our tragedy might wear off on them. I honestly think, though, most stand back because they don’t know what to do. In the face of what seem like insurmountable obstacles, physical challenges and emotional devastation, they simply don’t believe they have anything to offer.

That could not be farther from the truth.

As I reflect back on the past two years, I remember many times when I felt like Moses, alone on a mountain, growing weary of the fight. There were moments though, when people came beside me and helped me bear the load. In small acts of kindness, friends and strangers came along and held our arms up.

It was the town pharmacist who saw us adding yet another medication and took the time to ask if I’m OK.

It was my MMA instructor doing an entire class of just punching the bag because I was too raw for anything more.

It was the time at work when I broke down and every woman in my office stopped what she was doing to hold me while I sobbed.

It was random text messages from people saying they were praying for me.

It was my mom sitting with Alyssa so I could sleep for a few hours after being awake at the hospital for days.

It was our brand new babysitter being willing to keep Alyssa even on bad days so I didn’t have to quit school.

It was the other mothers in a Facebook group who understood the true intensity behind a simple post of “I hate epilepsy” and offered their virtual support from around the globe.

It was the friend who let me take off the mommy hat for a little while and talk about school or clients or some other gossip that helped balance out my brain.

It was the people who gave my boys grace because they understood how hard it is to watch their sister fall apart.

It was the teacher’s aide who gently held Alyssa as she crossed the stage so she could still receive her pre-k awards last year after seizures left her disoriented and unstable.

What I want you to notice is that few of the things I’ve listed are world-changing actions, but they were slivers of light in an otherwise dark time. They cost their givers little but meant the world to me. There was no special skill or expertise required, only the willingness to stay when our life was anything but pretty and we were too depleted to give anything in return.

The truth is that you usually don’t have to do anything extravagant to support the special needs parents in your world. I don’t need you to fight my battles. I don’t need you to have all the answers or the perfect plan. I just need you to stand beside me sometimes and hold my arms up.

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This post originally appeared on Mom with an Asterisk.

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What I Learned About Naked Parenting

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My baby. It took me a while to whisper those words to the tiny, blood-red thing quivering within a nest of rolled-up cloth nappies. His hospital tags bore my name, but how could I have possibly earned the right to call myself Mom when the only thing I could do for my son each day was to change his nappy through the portholes of his incubator?

I was a helpless spectator, watching as strangers yanked the invisible strings, which I prayed would pull my baby one step closer to home. And every night I left my son alone in the hospital felt like an insult to the very definition of motherhood.

When you give birth to a micropremmie, every trace of the new parent journey you might otherwise expect is stripped away. Those first layers that help establish our relationship with our baby and shape our identify as a mother don’t exist in the NICU.

Or at least, not for a while.

So instead, tucked away in the corner of Ward 9, away from the joyful cacophony of the Special Care Unit babies, I learned about naked parenting.

premature babies the mighty

It took four and a half months, but slowly … achingly slowly … the privileges of my parenting experience were expanded. And somewhere along the way, I became a mother.

But when did it happen? Could it have been that first, incredible time I held Etienne skin-to-skin; when I felt the tiny weight of him relax into my chest, when I smelled him and kissed his downy head 10 days after he was born?

Or did I become a mother several weeks later, when I fed Etienne a fingernail’s worth of milk through his gastric tube, the first time I was able to sustain and nourish him?

Was I a mother after I’d bathed him, or clothed him or picked him up when he cried? Or did it only happen once I’d strapped him into the car seat to go home?

Today, my parental identity has evolved into complex layers of experiences, emotions, insecurities and unanswered questions. But I confidently call myself a mother. So the only way I can answer that question is to strip my identity back again. To find the common connection between the me of today and that scared woman in the NICU, hesitant to call herself Mom.

So let’s take away the home-cooked meals and the carefully chosen outfits, remove playtime and the rituals of a baby routine; strip away the kisses, and the hugs, and the guilt, and the worry and the burden of “not good enough.” And what will stand before you, the essence of this naked mother, is just one remaining layer.

It existed even before I saw my son, before I touched him, bathed or fed him. Even before he drew his first breath.

I’m guessing this last layer is the same in all mothers.  

And that’s a fiercely protective, unwavering and unconditional love for our children.

So if you’re questioning your parental identity because you’re separated from your child, or because they’re in the NICU (or worse), or just because you’re another mom who feels like you’ll never live up to the impossible expectations of others … strip it back.

Take it back to the naked essence of motherhood, which is not about comforting or nourishing, or protecting or teaching. They’re just consequences of that final layer. 

I want to say this to the woman I was back then and to any other woman who ever doubted that title of Mom: At the very moment when our children existed, and we loved them, we earned the right to call ourselves a mother.

Then and forever more.

And once we accept that love is the foundation of motherhood, and every action or decision we subsequently make regarding our children is just an outcome of that final layer, perhaps then we’ll stop questioning and second-guessing and start loving ourselves a little more, too.

carmen gould naked parenting the mighty

This post originally appeared on 558 Grams.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? 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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The Important Reason This Woman Posted Her Graphic Selfie

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Tawny Willoughby is using her mistakes to teach the world about skin cancer prevention.

The 27-year-old mom has had basal cell carcinoma five times and squamous cell carcinoma once, according to her Facebook post below. On April 25, she decided to share the gruesome side to skin cancer treatment by uploading the graphic selfie below to Facebook.

If anyone needs a little motivation to not lay in the tanning bed and sun here ya go! This is what skin cancer treatment...

Posted by Tawny Willoughby on Saturday, April 25, 2015

The post’s original message read:

If anyone needs a little motivation to not lay in the tanning bed and sun here ya go! This is what skin cancer treatment can look like. Wear sunscreen and get a spray tan. You only get one skin and you should take care of it. Learn from other people’s mistakes. Don’t let tanning prevent you from seeing your children grow up. That’s my biggest fear now that I have a two year old little boy of my own.

After her post garnered attention, Willoughby added information about her previous tanning routine:

To answer a few questions and comments I’ve seen, I did the bulk of my tanning in high school. I probably laid an average of 4-5 times a week (I laid frequently because my tan faded very fast). I never laid in the tanning bed and in the sun in the same day. I never laid in the tanning bed twice in one day. I had my first skin cancer diagnosis at 21. Now, at 27, I’ve had basal cell carcinoma 5 times and squamous cell carcinoma once (excluding my face). I go to the dermatologist every 6-12 months and usually have a skin cancer removed at each checkup. I’m very thankful to not have had melanoma!

She also offered some education:

Skin cancer is not always moles, only one of mine has been a mole. Get any suspicious, new and growing spot checked out. Anything that doesn’t heal, possibly bleeds on and off and crusts. The sooner you find it the less likely it will leave a disfiguring scar or grow deep enough to metastasize. Melanoma kills, non melanoma disfigures (and can also kill). Don’t be a statistic! This treatment was done using a cream called Aldara (imiquimod). I’ve also had the following treatments: Curettage and Electrodessication, Cryosurgery (freezing with liquid nitrogen), Surgical Excision and Photodynamic Therapy (PDT).

Willoughby wrote on Facebook that in just two weeks, her photo was shared more than 5,000 times. As of May 12, though, that number had surpassed 50,000.

I’ve lost count of how many people shared it now and told me I’ve helped them,” Willoughby told CNN. “It’s really cool to hear people say they won’t tan anymore. I’ve had mothers thank me after sharing my pictures with their daughters. People in my hometown said they are selling their tanning beds.”

h/t BuzzFeed

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