About two months ago, I was getting my regular blood test since I have rheumatoid arthritis (RA). It was busy on this particular day, so I struck up a conversation with the woman sitting next to me to pass the time.

I noticed she had exercise gear on so I asked her what she does to stay fit. We chatted about the gym and the exercises we each do.

She then asked me why I’m having blood tests done (I saw her eyeing the ankle brace on my left leg.) I told her I have rheumatoid arthritis and explained briefly what it is. This was her response: “Rather than going to the gym, you’d be better off killing yourself. That’s what I’d do. I’d kill myself if I had what you have.” I’m normally quick off the mark with comebacks, but I was so shocked I couldn’t respond.

While I might not have been able to respond at the time, I decided to even out the universe with some good karma, particularly since those same blood tests showed for the first time in two years my RA was in remission!

After a lot of thought, I decided to do some fundraising for rheumatoid arthritis research. Less than a month from now, I’ll be participating in a 226-kilometer team indoor Ironman challenge, which includes a 4-kilometer row, 180 kilometers on an exercise bike and 42 kilometers on a cross trainer.

I can’t do a traditional Ironman event because of my joint pain, but that’s kind of the point. How I do something in life may not look the same as the next person, but my life certainly has value, and there’s a lot I can contribute to the world. Unfortunately, there will always be people in the world who will be quick to judge, but I’m proud I took the opportunity to turn hate into hope.

Alana Schuurs the mighty

Words matter. Please be careful when using suicide-related language. And if you or someone you know needs help, please visit the National Suicide Prevention Lifeline. Head here for a list of crisis centers around the world.

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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Today is my birthday. I’m not sure if it’s the maturity that comes with age or the fact that I’ve learned from my little guy with Down syndrome it’s not all about me, but when I’m asked the question, “What do you want for your birthday?” it’s not material things that come to mind.

In the four and a half years since my son was born, I’ve been motivated to give back, help people along in their special needs journey, and connect people who can help with organizations and people who need help. My hope is that as I continue on this journey, I will make an impact, be an influencer and drive change.

So this year, my answer to “What do you want for your birthday?” is this: about five minutes of your time to ask you to do the following:

1. Visit www.changingthefaceofbeauty.org and learn about inclusive advertising. Then encourage businesses you use to join the campaign. People with disabilities are the largest minority, and as a group, have significant disposable income and are brand-loyal to the companies that embrace those of different abilities.

People with disabilities, people like our loved ones, consume the same food, clothing, toys, and goods that those without disabilities consume, yet they’re often completely left out of advertising. Changing the Face of Beauty seeks to help make sure our loved ones are included in advertising. They believe if it becomes part of the norm to see people of all abilities in advertising, then it will be part of the norm to see people of all abilities included in our workplaces, too.

2. Connect with the organizations helping our loved ones. For me, those organizations are The National Down Syndrome CongressThe Trisomy 21 Program at the Children’s Hospital of PhiladelphiaThe Buddy WalkThe Montgomery County Down Syndrome Interest Group,  and The T21 Club of the Delaware Valley. These organizations can help so much in providing you resources, medical information, support and a sense of belonging.

buddy walk photo

3. Support endeavors like Dreamers Coffeehouse. This business is online right now, but it will soon become a brick-and-mortar coffeehouse that will employ individuals of all abilities. We need more people to begin businesses like these that will employ our family members with special needs and provide them with satisfying employment experiences.

We can promote the creation of new businesses like these by ensuring the success of the ones already in existence. Soon we may see this business as place to go to enjoy a great latte or cup of coffee, being served by employing our loved ones who are proud of their wonderful job.

4. Challenge your workplaces to become more inclusive. (OK, this could take more than 5 minutes.) Connect with your recruiting departments, HR and employee resource groups that focus on the differently able (many workplaces have them), and let them know it’s important our workplaces hire people of all abilities. If you’re not sure how to make this happen, there are organizations that can help. Ruh Global and the US Business Leadership Network can help create disability-confident workplaces that embrace inclusion.

This year, instead of wanting things for my birthday, I want change, change that will make the world a more inclusive place, so that as my 4-year-old grows and matures, he will find a world just as ready for him as he is for the world.

little boy in changing the face of beauty shirt

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. Check out our “Share Your Story” page for more about our submission guidelines.

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Henry Pavitt started kicking soccer balls when he was still using a walker — a full six months before he started walking independently.

Henry, 6, from New South Wales, Australia, was born with Down syndrome and a congenital heart disease that requires regular surgery on his main aorta. Because of his many medical complications, Henry was tube-fed until age 3 and didn’t start walking on his own until he was 5.

“There have been a lot of challenges with Henry’s health over his almost seven years, but he faces them all with a smile,” Henry’s mother, Lee-Ann Pavitt, told The Mighty.

In June, during an inclusive Football4All event put on by Football NSW, an Australian soccer organization, photographer Gaven Leung snapped the photos below of Henry with his father, Dean Pavitt. The touching, candid shots convey a little boy who’s faced his challenges head-on, and a father who’s loved him unconditionally through it all.

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Photos by: Gavin Leung/G-shotphotography

“Football has given us the chance to strengthen our bond more, if possible, while at the same time giving Henry some exercise and helping him coordinate and improve his cognitive thought processes,” Dean Pavitt told The Mighty. “Henry loves the photos of himself and Dad. I tell him he is a soccer star and a soccer model. He smiles and nods ‘yes.'”

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Photos by: Gavin Leung/G-shotphotography

“When I look at the photos I’m so proud of Henry and the special bond we have,” Pavitt said. “Henry is my son, my best mate and the love of my life.”

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Photos by: Gavin Leung/G-shotphotography
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Photos by: Gavin Leung/G-shotphotography
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Photos by: Gavin Leung/G-shotphotography
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Photos by: Gavin Leung/G-shotphotography
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Photos by: Gavin Leung/G-shotphotography

h/t Daily Mail

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Conversation fills the air. A waitress serves appetizers on a silver platter to well-dressed guests. Soon, I’m in a conversation with someone I’ve never met when the question comes up. “What do you do?” As in, what do I do for a living? What value am I providing to society? What is my worth, net or otherwise?”

Have you been there?

Do I say I’m a special needs mother? An author? Or a blogger? Though all three are true, the majority of my time is dedicated to caring for our son. Do I recount his latest achievement of conquering crawling at 9 years old? Or how he’s just now learning to stand?

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I met another mom at a baby shower recently. She shared about her son and his antics playing with the dog in the swimming pool. I listened, wondering how I could relate to her. Interrupting my thoughts, she asked if I had any children. Yes, I answered. I shared a little of my journey and received the same blank look I must have given her when listening to her story. We were both moms, but we were at opposite ends of the spectrum. Special needs mom vs. non-special needs mom.

Is her role in raising her child more valuable than me raising my child with special needs? Who knows, maybe her son will be a future president. Is there value in raising Samuel? Is my worth as a mother less because my son won’t be president, a doctor or dentist? Perhaps, yes. But it depends on how you look at it.

When watching an action movie, we find ourselves routing for the underdog, overcoming all odds to surprise the audience causing them to cheer. My hope is that my son does the same. To point to his biggest achievement of surviving a lethal form of dwarfism. To share with the world that miracles happen. Though he may not walk or talk, I choose to focus on his life, a life that inspires without saying a word or taking a step.

Over the years, I’ve received many emails from other families who found Samuel’s story on the internet. They, too, were given a negative birth diagnosis. My son inspired them to believe that nothing is impossible. That hope is a precious commodity offered in the form of a little 20-pound package. Hope, inspiration… the stuff underdogs are made of, if you ask me.

And though I might not be able to relate to a non special needs mom extolling her child’s achievements, achievements my son will never reach, I find peace knowing Samuel touches lives in unique ways. So when I’m tempted to think my journey as a mother is less than other mothers’, I need to be reminded inspiration is a great achievement. May all our lives inspire.

As I go to a wedding this weekend, I’m sure I’ll be asked what I do. I can proudly say I’m the mom of a miracle. I’m special needs mom.

How about you? How do you answer the question, “What do you do?”

Follow this family’s journey on Miracle Mann.

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 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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Recently after speaking at a lifestyle expo, a member of the audience asked if there was one message I would give to reduce the stigma around mental illness, what would it be?

Now I’m not known for thinking on my feet, but strangely the answer popped straight into my head: “I would like people to know, in their hearts and in their heads, that depression is not a choice.”

My quick answer was inspired by an “inspirational” post on Facebook I had commented on earlier that week. “Happiness is a choice. Every single day you make a choice,” the post said.

I disagree. And I said so. I even advised the author to think carefully about language use. (I’m sure the user was grateful for my advice not!) A number of responses followed mine. Some agreed with me, while others asserted happiness was definitely a choice.

I don’t want to be a voice of gloom, but I do know the thoughts that tortured me. I constantly berated myself for not being happy.

I should feel happy. I should feel grateful. I should look on the bright side. The list is endless. All of these thoughts implied I have a choice and left me carrying huge guilt because I couldn’t do any of these things.

Think of it like this:

If I had a broken leg, would I be telling myself I should be able to run and jump and hop and skip? No. I would know I couldn’t. Would I feel guilty? No. Is it likely anyone would tell me if only I changed my thoughts I would be able to jump, hop and skip? I doubt it. What about if I just “cheered up?” Could I run, skip and jump then? I don’t think so.

So, what’s the difference?

The difference is some people believe it’s a choice to be depressed. There are no blood tests to confirm it. There are no X-rays to confirm it. Although I’ve been told if my brain had been scanned while I was at my worst the image “would have lit up like a Christmas tree.” Strangely, this was reassuring to me. If I had scans to show the physical “proof,” it would have helped with the guilt. How sad.

I’m sure if the general population understood depression is not a choice, there would be less stigma. Perhaps empathy would replace impatience,  and understanding would replace cynicism. Education is the solution.

But there’s something that is a choice: Seeking professional help.

As hard as it is, it’s the only way to go. And, just like any other illness, the earlier we seek help, the earlier treatment can begin and the better the outcome is for everyone. Would you hesitate to seek professional help if you broke your leg? What a ridiculous question. Of course you wouldn’t. Would it be a sign of weakness? Another ridiculous question.

So be strong. Be proud. Ask for professional help. Be proud of yourself for doing so.

To those professionals who changed and saved my life, I thank you.

Follow this journey on Write Strong.

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Vinnie and her students

Vinnie Page is a 31-year-old teacher who grew up in Rome, New York. As a cheerleader in high school, she frequently went to events at the New York State School for the Deaf, a local school for children with hearing difficulties. Now, Page has returned to the school and teaches second grade. She has a small class with four boys.

This school year, The Mighty asked its readers to nominate a special needs teacher who made a difference in their or their loved one’s life. To nominate, they submitted an essay to us. Our staff then picked five teachers, and Page made the cut. So we reached out to her to learn more about what makes her so Mighty.

Describe the moment you knew you wanted to be a special needs educator.

I remember in elementary school we had a career day, and I always knew it was something I wanted to do. I wanted to teach. I think I really knew I wanted to be in special education when I was in middle school. I knew then that was my passion.

How do you communicate with students?

I teach students who have cochlear implants and hearing aids. I use voice and sign language all day, and I use a voice amplification system. It’s a piece I wear around my neck, and it has surround sound throughout the classroom. We do a lot of visual, hands-on things, whether it be on the promethean board or other technology like laptops or iPads. I use a lot of visual manipulatives.

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Students using technology in Vinnie’s classroom

What specific technology do you use? It’s similar to a SMART board, but it’s a promethean board. It’s an interactive white board. It’s really neat. I can display anything from my computer screen onto it. The kids can actively use it up on the board as opposed to sitting in front of the computer. It’s a huge motivational piece to not have to sit. They want to interact.

What advice would you give someone who’s just starting out as a special needs teacher? Your former self?

The biggest thing I stick by and the one thing I think is most important for myself and my students is building a relationship with them. A key factor is being able to relate to your students and build some sort of a relationship other than just being their teacher. I give my kids a hug every day when then leave and every morning when they arrive. We talk about what they did the night before. It lets them know you care and that you’re there for them.

Describe a moment when you were satisfied with your job.

Always. I love what I do. I love my kids. I love the people I work with. I feel so blessed to be working where I am. I’m thankful every day because I enjoy everyone. All the students, all the staff. I’m just fortunate. Knowing the kids come in with a smile and that they want to be here, that just makes my day.

If you had a $1,000 grant for your classroom, what would you buy?

Any sort of technology, like interactive tables.

IMG_4692 What can parents of special needs children do to ensure their child gets the most out of school?

Being a part of every aspect of their education. Being involved and making sure they’re getting what they need. That’s important. Educators want parents to be involved.

What’s one way you make learning fun for your students?

Asking them their opinions and ideas so they feel like they have a part in deciding.

What’s the most memorable thing either a student or a parent has said to you?

Students telling me how much they love me and that they love coming to school. I actually had a student write to me, “Thank you so much for giving me a second chance.”

How do you motivate a reluctant learner?

By taking something of interest to them and turning that into a lesson. For example, I have a student who loves Mario and Luigi. We were trying to learn some vocabulary words the other day and we were talking about heroes. He just wasn’t interested at all so I said, “OK, how about Mario and Luigi? Who do they save?” And he said, “Oh the princess, and I said, ‘He’s kind of like a hero, he saves her.'”

What’s the most rewarding part of your job? Being able to work here every day with these kids. They’re awesome.

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