When a 3-Year-Old Told His Mom That My Daughter Looked ‘Weird’

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For months, my daughter Betty’s physical therapist had encouraged me to have a short answer ready to explain her condition when the questions came. I thought about it a little, but felt pretty confident in how I could handle the “she has special needs” conversation with a curious onlooker. Plus, our entire community — family, friends, neighbors, strangers — had cradled us so supportingly, it was hard to believe that any hard questions or uncomfortable comments might ever come. But then one day, one did.

The thing that caught me most by surprise was the fact that a 3-year-old was the one who broke me. He came into the room as we got ready to leave a playdate and simply said to his mother, “Mom, Betty looks weird.” From the days when we first started to notice that something wasn’t right, through my daughter’s diagnosis and now nearly 18 months later, I had felt and acted uncannily strong. But in an instant, that façade collapsed, and I immediately felt the need to flee. I shoved our things in a bag as I felt the tears and a thousand different emotions surge to the surface. My friend, embarrassed, apologized for what her young son had said, to which he replied, “No, but Mom. Jack [his older brother] said she does. And I think so, too.”

Within a few seconds the metaphorical bough broke and all of that cradling from everyone around us was brought into question. Does everyone think she looks weird? Have they been lying to us when they tell us how cute she is? Is this just a preview to what the rest of her life — our life — will look like? Will she ever even be aware enough to realize people around her are saying hurtful things? I tried to reassure my friend and address the child’s concerns. In a shaky voice, “Yeah, she’s a little different, isn’t she? I guess we all are!” And then I left as quickly as possible so I could cry in the semi-privacy of my car with my two kids in the backseat.

Before I had children, friends who were parents had warned me that when your kids go through tough things you ache right along with them. But what I didn’t realize was that raising my daughter with special needs might mean that I would hurt for her. Betty likely had no idea what had been said. She didn’t feel the sting, the sadness, the hurt. But I did. It’s difficult to carry that and anticipate a lifetime of curious comments that might hurt. And though it’s a sad prospect to face, I’ve realized that this is a tiny part of her burden that I can carry for her. How many times do we wish we could deal with the challenges of our child’s disease, disorder or delays instead of them? This is one thing I can do for my daughter, one part of her life I can trade. And I’m more than happy to.

Dear little daughter, I will happily hurt for you. I’ll cheer for you and I’ll pray for you and I’ll believe in you. But I’ll also feel all of the pain you might not be able to feel. And that’s OK. Because I’m your mom and I love you.

Sarah Evans the mighty.2-001

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When a Man in a Shoe Store Thanked Me for Inspiring Him

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Years ago I worked at a shoe store.

It was a full-service store where we helped every customer find the perfect shoe for their needs. Sometimes this meant taking down and stacking boxes of shoes up to your eyeballs. We’d sit the customer down and have them try the shoes on, then ask them to walk or run around to see how they felt, oftentimes even tying the shoes for the customer.

Not until years after the fact did I ever think about how my customers must have felt when I, a guy with only one hand, tied their shoes for them.

One afternoon as I was stocking our shelves, I had that feeling. You know that feeling when you can sense that someone is behind you. Well, eventually I saw him. He was much older than me, probably in his early 60s. He looked nervous, almost scared.

At some point, I approached him and asked how I could help. I’ll never forget his response.

“I’m actually on my way to a job interview and I stopped in here to try and calm down,” he said. “I’m incredibly nervous. You see, I have a bad foot and it makes me very insecure. Even though I know you can’t see it and that nobody will notice it unless I tell them about it, I know it’s there and it makes me feel like a loser. I just wanted to tell you … I’ve been watching you for a while now and you’ve inspired me to go to the interview and do my best. You’ve been helping people confidently and you’ve been doing all of your other tasks without even thinking about your arm, it seems like. I’m envious of your confidence, honestly! So, thank you.”

I just stood there, stunned. I hadn’t been doing anything out of the ordinary. I’d just been doing the same things I did every day. I was just doing my job.

That gentleman was encouraged by me that day, but really, he gave me a gift, too. He taught me we don’t have to do extraordinary things to make an extraordinary difference in the world. You never know who you’ll inspire just by being you.

We ended up having a great conversation, and I encouraged him the best I could to give it everything he had at that interview. To be confident. To focus on his strengths and to let them know why he was the best person for the job.

If this were a storybook, I’d tell you that he stopped in a couple weeks later to tell me he got the job. But, it’s not and he didn’t. And that’s OK. Because that’s life. We have a moment and then we move on.

I was happy he was able to learn something from me that day, but I’m even more grateful for the lesson he taught me.

Ryan Haack the mighty.2-001

Follow this journey on Living One Handed.

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This Woman Is Empowering Kids With Special Needs With Superhero Capes

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In August 2012, Robyn Rosenberger thought it would be fun to sew a superhero cape for her nephew for his birthday. She’d never made a cape before and it was her first sewing project, but she enjoyed it and continued to make capes for her son, her dog and her friends’ children that same year.

During this time, she was following the site Blessed by Brenna, a blog about a young girl around her son’s age who was born with a severe skin disorder called harlequin ichthyosis. Rosenberger was reading Brenna’s story on her phone while rocking her son to sleep one night when she had an “aha” moment.

“Brenna needed a cape,” Rosenberger told The Mighty in an email. “My son looked super cute in one, but Brenna needed one.”

Rosenberger sent Super Brenna a custom-made cape in January 2013. With that, TinySuperheroes, a small business that sends homemade capes to children living with illnesses or disabilities, was born.

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Rosenberger runs TinySuperheroes out of her home in Saint Louis, Missouri. The capes are custom-made, come in a variety of sizes and colors and each feature the child recipient’s first initial. Families can purchase a cape for their child or nominate a loved one to be placed on the TinySuperheroes waiting list. With every cape purchased, an additional cape goes to a child on the waiting list.

As of summer 2015, Rosenberger has sent more than 6,000 capes to kids all over the world. But, she says, she’s just getting started.

Rosenberger can recall the exact moment she realized TinySuperheroes was her calling. She received an email from a father whose son had passed away days after receiving his cape. He wanted her to know the impact it had on his son and on their family was so great they decided to have him buried in his cape.

“This is the hardest part of this journey, to know that some of our TinySuperheroes will not make it to kindergarten, or to their 16th birthdays,” Rosenberger told The Mighty. “But to know that I have the opportunity to provide something tangible that could provide a single ounce of joy to a family during the most difficult moment of their lives meant that I was in this for the long haul.”

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Rosenberger hopes TinySuperheroes helps the children feel empowered and proud of who they are. She wants families to feel bolstered and encouraged when they see their children wearing the capes.

But more than anything, Rosenberger hopes TinySuperheroes can change the way the world thinks about illness and disability in children.

“I hope that through superhero capes, we can train people to see their TinySuperPowers instead of their differences,” she told The Mighty.

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Super Tayen Gilbert GOOD

Learn more about the TinySuperheroes mission in the video below.

To learn more about this project or to order a cape for the tiny superhero in your life, visit the TinySuperheroes website.

Photos courtesy of Robyn Rosenberger.

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Dad Creates Superheroes Who Use Their Disabilities as Superpowers

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Dan White couldn’t find a character anywhere in the media that his daughter Emily, who uses a wheelchair, could relate to. Emily was born with spina bifida, a birth defect that affects the spine and nerves.

White eventually noticed there were some characters in wheelchairs, but he none who he felt really showcased disabilities in a way children of all abilities to admire. So, he decided to illustrate his own set of characters — ones who use their disabilities as their superpowers.

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Aimee, Dan and Emily White. Via Dan White

“I wanted a broad range of diverse characters that would be unique, original and be fun for all kids to look [to] and emulate,” White told The Mighty in an email. “[The characters] show the wider world that disability can be a power, that it’s easy for disability to be mainstream without being frightening or misunderstood.”

The characters, who are all part of what White calls the “Department of Ability,” include Emily, an alien, a ghost and two animals. They all use what makes them different to their advantage. Pawsy the cheetah has a prosthetic leg, which helps him outrun everyone he meets, and Emily has a multi-functional airborne wheelchair. Her catchphrase is “Eat my wheels.”

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Emily as a character in the Department of Abilities. Via Dan White.

White quit his job to focus on the “Department of Ability” full time. Right now, he’s working with charities in the U.K., such as Strongbones Children’s Charitable Trust, to distribute the comic once it’s done (hopefully in 2016). In the future, White hopes the “Department of Ability” characters will go global, and he wants to turn the comic book into a television show.

You can watch the Whites’ interview with the BBC below.

They’re the “Department of Abilities” – Comic book heroes whose special powers are their disabilities. Its the work of…

Posted by BBC South Today on Wednesday, July 22, 2015

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How ‘Guardians of the Galaxy’ Helped a Little Boy With Dyspraxia

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We never know the full scale of how what we do can impact the lives of others.

James Gunn, known most famously as the writer and director of the 2014 film “Guardians of the Galaxy,” was touched by a post a fan recently shared on his Facebook wall.

This month marks one year since the release of “Guardians of the Galaxy,” which prompted Josh Dunlap, from Las Vegas, Nevada, to send Gunn a message concerning Dunlap’s son, Sawyer. Sawyer, 4, lives with a developmental coordination disorder called dyspraxia.

Sawyer connected with the character Groot from the movie, and Dunlap credits the character and the film with helping Sawyer learn to communicate better and eventually enter speech therapy.

See Dunlap’s touching message to Gunn below: 

 

Hi James...This is in response to your recent post about Guardians being released a year ago and the effect it has had...

Posted by Josh Dunlap on Friday, August 14, 2015

Touched by Dunlap’s words, Gunn shared the message on his Facebook page and said, “I love making movies because of stories like this. Thank you.”

See the Guardians of the Galaxy trailer below: 

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When a Little Girl Asked Why My Son Can’t Talk Like Her

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I can’t tell you how often I hear, “Don’t compare your child to others.” I’m also guilty of telling other parents and friends this same thing.

But I’ve never really believed it.

We naturally compare our kids to others. We compare ourselves to others. We compare our families to other families. And I don’t think we do this out of jealousy or competition. I think we make comparisons because we want to fit in. We particularly and desperately want our children to fit in. It is a hard-wired mommy concern. It’s why we do what we do. (Do you really love doing annual holiday photo cards and taking young children to Disneyland and going on all those playdates? I don’t love it, but I do ’em all.) While you and I know that fitting in isn’t of the utmost importance, it’s hard for our kids to realize this at such a sensitive and insecure stage. Even though you and I know conformity isn’t “all that,” we mighty still want it, at least part of it.

I’ve been thinking about this a lot, ever since my neighbor’s child said something about my son’s speech delay. She is nearly the exact chronological age as Ben (4) and she is a highly verbal child. Ben, on the other hand, can barely say his own name. He refers to himself as “Beh” and is limited in speech due to verbal apraxia. She asked me, “Why can’t Ben talk like me?” I felt a wince of pain in my heart but pushed it aside and answered her question. A year or so ago I would have held onto that pain, but I think I have gained more perspective and confidence in Ben’s abilities in the past year.

We might always compare our kids to others. But it’s important to do so with perspective. Be cognizant that your child is unique, and always keep your focus on both the future and the past. Some typical parents don’t have to worry about the past; they might be able to keep looking forward. But as a special needs parent, I feel tied to it. I have to keep looking back, comparing, analyzing and appreciating the past. It’s important to me to know what other kids are doing and what we have to aim for. It’s hard to compare without sadness or jealousy, and it’s something I actively work on by reminding myself of the past.

As a doctor, I understand developmental milestones. I know it will take years and years of speech therapy and dedication on my part to help Ben talk like other kids. I can understand this with my doctor brain, but my mommy brain aches for him. It aches when I see other kids running, dancing and talking circles around him. I know he’s behind in his verbal skills. But I’ve also seen him grow immensely over this year. Already at age 4, he has faced adversities that my neighbor’s child will probably never face — and he is overcoming them. As the years go by, I’m gaining strength, too — strength to keep running this marathon alongside him.

I have also learned that Ben’s apraxia is an opportunity to teach others about our diversity and acceptance. While this seemed hard to do at first, it went over well with my neighbor. When she asked me about his speech delay, I told her all kids talk and learn differently and that it’s hard for him to make words like her. I stressed that it was a chance for her to help him with his words. She smiled and ran over to play with him. That part made my heart a little happier.

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