The Moment That Made Her Stop Hiding Her Autism and Start Advocating

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I’ll never forget the pain on my daughter’s face when she realized she was being made fun of once again. My daughter, Bree, has high-functioning autism and when stressed or concentrating, she tends to rock her head from side to side. One evening, we were racing to an appointment and stopped at a red light. A car of local high school boys drove up alongside us and began laughing and rocking their heads, mimicking her rocking motion. As the light changed and we moved forward, the realization they were mocking her hit her like a ton of bricks.

The pain was evident in the tears that flowed from her eyes. I tried to hold back my own tears and suppress the utter feeling of complete hopelessness in society that was consuming me.

For years, Bree didn’t want people to know she had autism, even though I felt the truth was better than her being misunderstood by her peers or called cruel names behind her back. Often she sits in the back row at school so as not to bring attention to her rocking. Bree’s head rocking was often the target of her classmates’ jokes. With social media, it was even used against her when her first boyfriend changed his relationship status to include her name. It wasn’t “that’s awesome” or “congrats”; it was mean comments about how she rocked or was different.

The night of the car incident, she decided to post a status on social media because she was so hurt and lost hope. Here’s what part of her post said:

“I’m so sick of people these days. So immature. I’m sick of people making fun of me because of my autism. I’ve been rocking my head since I was 6 months old. It’s something I have to because of my autism. I hope it makes you feel so good to make fun of somebody with a disability…”

To her surprise, she received over 200 likes from peers who normally never acknowledged her. Those “likes” restored our faith in humanity and from that moment on, Bree no longer hides her autism. She spends her time advocating for those with special needs. She’s a NISRA/Special Olympics athlete and global messenger, and through speeches and projects like “Reach Up,” she tries to show the world all that those with disabilities can do instead of focusing on what they can’t do. She hopes society can continue to appreciate everyone, even those who are different.

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The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond 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. Check out our “Share Your Story” page for more about our submission guidelines.

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Taylor Swift Donates $50,000 to Sick Fan Who Missed Her Show

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Taylor Swift is quickly becoming known for her generosity to her fans, but she’s really outdone herself this time.

Naomi Oakes, 11, was diagnosed with acute myeloid leukemia on June 25, according to the YouTube video below. The Taylor Swift fan is currently undergoing such aggressive treatment that she can’t leave the hospital for six to nine months. To get through this tough time, she chose Swift’s song “Bad Blood” as her cancer fight song and uses it with the slogan “Get rid of the bad blood.”

On top of all the other bad news, Naomi was dismayed to hear that her long hospital stay meant she’d have to miss the Taylor Swift concert on August 18th in Phoenix. Her parents had given her the concert tickets as a Christmas present.

So, in the hopes of cheering her up, Naomi’s family and friends decided to make and share the video below to try and get Swift’s attention.

And it worked.

Swift heard Naomi’s story, and on July 7, she donated $50,000 to her GoFundMe page.

To the beautiful and brave Naomi, I’m sorry you have to miss it, but there will always be more concerts,” Swift wrote on Naomi’s GoFundMe page. “Let’s focus on getting you feeling better. I’m sending the biggest hugs to you and your family.”

Check out Naomi’s reaction to Swift’s gesture in the video below: 

Swift’s generous donation will go toward Naomi and her family’s mounting medical costs as she continues to get treatment.

Go here to donate to Naomi’s GoFundMe page, or to hear more about her story. 

Check out the “Bad Blood” music video below.

h/t Mirror

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Why It’s OK My Daughter Received No Awards at Her 8th Grade Graduation

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It’s the 8th grade graduation at Higgins Middle School in Peabody, Massachusetts. In the midst of announcements recognizing junior honor society members, scholarship recipients, superlative winners and top students in records of attendance and community service, please let me introduce you to an academically average and otherwise ordinary student: my daughter, Mandy. Her name won’t be announced for any awards today. She sits among a large sea of faces in the letter “M” section of the incoming freshman high school class of 2019. 

To many, the most outstanding thing about Mandy is that she’s “the kid with the cane” the only student out of 450 in the 8th grade graduating class who uses a long white cane for safe independent travel.

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Mandy at her 8th grade graduation, smiling and wearing a colorful dress.

Mandy isn’t on the president’s list.

She isn’t a member of the student council.

She doesn’t volunteer as a peer mentor or tutor.

She isn’t in the band or on a sports team. 

She doesn’t even have perfect attendance with four eye disease specialists, appointments inevitably get scheduled during school hours. 

Mandy’s artwork doesn’t hang from the school corridor walls, though her boundless imagination colors everything she touches.

She doesn’t formally cheer at athletic events, but she’s the most lively cheerleader of American history her 8th grade social studies teacher has ever seen.

Mandy isn’t on record as one who “volunteered the most hours at the local food pantry.” Her community service includes encouraging a new shy classmate and consoling a much younger bus mate who was temporarily trapped in a damaged seatbelt.

Her exemplary performance comes not in straight A’s, but in achieving just one semester of honor roll while juggling lessons in Braille, assistive technology and orientation and mobility.

Her superb memory doesn’t produce perfect test scores, but instead inspires choosing a year-end gift for a favorite teacher based on an offhand remark made several months earlier, at the start of the school year.

She’s a member of the honor society for perseverance.

She earns a 4.0 in enthusiasm.

Her superlative is most inquisitive.

Her biggest achievement is adaptability.

She’s a recipient of scholarships for courage and kindness. 

Mandy’s strength comes out of her weakness and her assets are a direct result of her limitations. My daughter is daily learning to make advantage out of disadvantage.

 It’s a beautiful adventure to witness this miracle in mediocrity.

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Mandy smiling in between her parents.
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The Side of Infertility That’s Still Very Much Taboo

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Infertility isn’t glamorous. It isn’t always inspirational quotes and images of the ocean on tumblr. It isn’t always holding hands in waiting rooms and wishing the people you’ve met along the way, “Good luck.”

There’s a side of infertility that’s becoming more widely acknowledged in our society, but is still very much taboo. It’s the anger. The sadness. The grief. Nobody talks about these things because we’re supposed to remain positive. And while a positive attitude is important, we’re all only human. One of the hardest things I’ve had to do is find a balance between remaining positive and being human.

The day my wife told me we’re going to be aunts again is a day I’ll never forget. I cried the type of gut-wrenching sobs I’ve only cried two times before in my life: When my mother was diagnosed with late-stage cancer, and when my brother died. I spent the entire day on the couch eating peanut butter out of the jar while watching “Roseanne” reruns. I remember something Aunt Jackie said to Darlene in one particular episode: “Life is unfair. Life is this big unfair thing.”

Life sure is this big unfair thing, and there’s nothing anybody can do about it. Here we are, months out of our news with thousands of dollars less in the bank, and no baby. Procedure after procedure followed by surgery, and no baby. While it seems like the rest of the world tries once, twice, or not at all, we have to remain positive.

I cried so hard and so long that day because I hadn’t let myself cry before. I would shed a few tears here and there, and then go about my day. I never actually took the time to sit with myself and my feelings. I believed that if I let myself feel them, I was admitting that this would never work. I also let people make me believe that my feelings are somehow unimportant. After all, all I have is a combination of fertility problems. I don’t have a terminal illness… However, the truth is I have every right to feel my feelings, as unpleasant as they are sometimes. I’m grieving something that never existed while trying to balance my feelings towards everyone else’s happiness.

Because infertility often gets swept under the rug, those who experience it are left feeling alone. And feeling alone when you already feel like you have the weight of the world on your shoulders isn’t a good combination.

My advice to anyone currently walking this journey is simply be kind to yourself. In addition to giving myself permission to feel, I’ve learned to give myself more “me” time and not feel guilty for treating myself every now and then. If I don’t take care of myself, I can’t take care of anything else. If I can’t take care of anything at all, how will I ever find the light at the end of this tunnel?

Though some days I can see it more than others, I know that there is a way out. There is a bright light at the end of this journey, even if it isn’t what I’ve envisioned.

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Johnny Depp Dons Jack Sparrow Costume to Visit Kids in the Hospital

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Johnny Depp might be pretty busy filming the latest “Pirates of the Caribbean” movie in Australia, but he took some time to surprise kids at the Lady Cilento Children’s Hospital in his full Jack Sparrow costume, Nine News Brisbane reported.

Depp took photos and chatted with kids in the Brisbane hospital. One 7-year-old named Max Bennett, who was on life support just weeks ago, even received gold coins from the celeb, according to ABC News. You can watch the exchange in the video below:

The 52-year-old movie star often visits hospitals in costume, according to Nine News Brisbane.

Check out more photos from his heartwarming visit below:

 

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A Guide for Parents Who Are New to the NICU

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Dear New NICU Parents,

Welcome! Congratulations on your amazing gift.

I know you’d much rather be in your own room snuggling your baby on your chest, but alas, life has brought you here. Please know you’re not alone on this journey.

This is your Day 1. Breathe.

You’ll undergo orientation for everything that’s happening where and how to wash your hands, what you can or cannot eat or drink (Nothing, unless you’re nursing. Then water), who your doctors are (Yes plural), what team you’re on and who your discharge nurse is. You’ll learn the term “assessment” and watch bright lines and waves on black monitors. Don’t worry they’ll make sense soon. You’ll learn about the bed your baby is in. You’ll figure out what medicines he or she is on. You’ll get frustrated, and that’s OK. When you go to find a soda to get some sugar in you because you haven’t eaten in two days, you’ll realize there isn’t one ounce of real sugar in this place. You’ll get nervous when you realize only two people are allowed by your baby’s bedside, because you need support from your family, friends or both. You might not think so, but you’ll get through it. You might be terrified, but you’ve got this. You’ve got more courage than you know.

By Day 5, you’ll figure what time doctors actually make their rounds, not the assumed or expected time. You’ll figure out you must first listen to their round and then ask questions when they’re done. You’ll start to pick up on how to help with baths, stretches and, hopefully, dressing and diapering. You might still be recovering. Give your body grace to heal.

On Day 15, although I secretly hope you’re already home, you’ll start to pick up on which primary nurses love your little one like their own. You’ll start to strategically steal the good rocking chairs. You’ll know by now how to take temperatures. You’ll know which sound is an alarm and which alarm is a feeding. With all that walking through the hospital, you’ll wear sneakers more and flip flops less. You’ll figure out, although the cafeteria has a few junk food items, the real food (i.e. M&M’s) are in the vending machine on Floor 3. Or ask another NICU Mama she usually has at least half a chocolate bar in her bag.

photo credit: Baker Baker Photo
photo credit: Baker Baker Photo

It’s Day 29 and you’ve mastered the five-minute I-don’t-really-care shower. You’ll notice pajamas are just as acceptable as the outfit you’ve been wearing three days in a row. By now, you’ll have mellowed out a bit. You’ll know when it’s OK to trust the amazing nurses and get out. I highly suggest when this time comes to choose a nap over anything else. You’ll feel guilty at first leaving your little one, but will realize you need to take care of yourself as well.

Day 52 and you’re on autopilot. Just warning you. It’s OK to coast for a while. This can be a long haul, but you can do it. You’ll be oddly thankful for those rushes of adrenaline when they come. You’ll start calling some of your doctors by their first names. They might even cry with you when answering hard questions. It’s because they love your kiddo. It’s not just their job, it’s their passion. And if it’s not, find a new doctor. Feel free to talk to patient advocacy. That’s your choice.

At this point you’ve seen many babies come and go after only a few days. Outwardly, you’ll be happy for them. Inwardly, it’s OK to grieve. It’s OK you’re longing for that day. 

By now I hope with all my heart you’re already home.

Day 64: You’ll be drained. But that’s expected. You’ll be frustrated. It’s OK to be. You’ll be more comfortable changing a diaper with wires than without. You’ll soon get to bring in new clothes. The simple task of washing them will make you feel like a mommy. You’ve figured out there’s no sugary drinks anywhere within a 10-mile radius of the hospital. You know the nearest coffee shop and exactly which restaurants deliver after 11 p.m. You’ll start forgetting what level you parked your car. Sadly, you’ll probably see a baby pass away. Your heart will be torn out of your chest. You’ll panic. You’ll cry. It’s OK. Let the emotions roll. You’ll start thinking what if, but don’t let yourself go there. Focus on the good. Weep with those who weep and have joy for those who have joy.

You’ll start to realize, as odd as it sounds, there really are good days in the NICU. You’ll celebrate your little one’s every milestone. Tears of joy are accepted here. Tell other mamas — we want to celebrate with you! You’ll learn that word spreads fast in this tight-knit family.

Be prepared for your life to change forever, and to witness love and life like you’ve never known before.

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