Teen’s Interview With His Grandma Reveals Harsh Realities of Alzheimer’s Disease

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Justin Boswick sees film as more than just a storytelling medium — he views it as a way to make a difference.

The 17-year-old from Medford Lakes, New Jersey, recently created “The Word Search,” a short five-minute documentary (video below) about his family’s experience with Alzheimer’s disease and a loving tribute to his grandmother.

The film centers on Justin’s interviews with Dorothy Landis, his grandmother who lives with Alzheimer’s disease, and Jennifer Boswick, Justin’s mother and Landis’s daughter. A third interviewee, Krista McCay, is the Director of Programs and Services at the Alzheimer’s Association.

Against a backdrop of old family photographs, video footage and snapshots of Landis’s current room in an assisted living home, Justin asks his grandmother questions about her previous years. He and his mother show her old photographs to try and trigger memories, but she has difficulty remembering and discussing them.

“Do you know that you’re diagnosed with Alzheimer’s disease?” Justin asks his grandmother in the film.

“No, I don’t know anything about that,” she replies.

Justin told The Burlington County Times he enjoys making films that resonate emotionally with viewers. He hopes the documentary helps people learn about Alzheimer’s disease and how severely it can affect families.

“You’d be hard pressed to meet someone and they say they have no idea what Alzheimer’s is or that they haven’t been impacted at all,” McCay says in the documentary. “Whether it’s a grandmother, an uncle, a mother or a father, somebody knows somebody with the disease.”

Watch the documentary in its entirety below.

“The Word Search” will be screened at the Princeton Student Film and Video Festival on July 23. It was one of 24 films selected from more than 200 submissions.

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Why This Amputee Army Veteran Is Suing a Six Flags Theme Park

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I’ve never felt disabled,” Larry Panayi says in the video below, “until that day.”

Panayi, an amputee veteran from Fort Worth, Texas, was visiting the Six Flags Over Texas theme park with his family in 2013 when ride operators refused to let him on as many as 13 rides, CBS News reported.

Now, he’s suing Six Flags for disability discrimination.

Panayi says the park would not allow him on the because he has only one leg, despite the fact that in the past he’s been allowed on with no problems. His lawsuit claims that the park’s decision to not allow certain amputees to ride is based on speculation about abilities and not on actual risks to the rider or others.

I’m here with my little nieces and nephew who look up to Uncle Larry who can do anything and accomplish anything despite his quote unquote disability,” Panayi told CBS News. “And they’re hearing somebody tell me I can’t ride a roller coaster? It’s just not right.”

Get more on the story in the video below: 

 

The Mighty reached out to Six Flags Over Texas for comment but received no response. 

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The Practical Special Needs Mom Survival Guide

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As special needs moms, we frequently find ourselves frazzled, scattered and well, quite honestly, tired. And when we’re in this scattered, frazzled and tired state, we don’t necessarily make the best decisions.

So pour yourself a cup of coffee and glance over this Lilliputian list. My hope is that maybe, just maybe, it will help some of you get your ducks in a row and stay on track when times get tough, hectic, busy and demanding. And for special needs moms, those times tend to be the hours when you’re awake, and, frequently, the hours when you should be sound asleep.

The following list is intended to be a gentle reminder. Just picture a diminutive little me in a long and flowing frock, sitting on your shoulder and whispering these pearls of wisdom directly into your brain.

1. Haircuts. Don’t.

This is probably the most important thing on the list, and it has taken me years to master this one. At least I think I have.

Don’t cut your hair. Not when it rains, not when you’re mad and especially not right after you have given birth. It will seem like a good idea at the time, but it rarely is.

You will think, “This is just what I need to boost my spirits!”

It’s not.

Throw it in a ponytail and sleep on it. I feel 99.9 percent confident in saying you will feel differently about tomorrow.

2. Chocolate. I don’t care what your budget is, buy it.

You need a stash. Build it, hoard it, hide it. It’s mandatory, essential, necessary and about eight other words I don’t have time to Google.

Trust me, you will not survive without it.

If you encounter people who say they don’t eat it, drink it or use it, they’re lying!

Cultivate your collection. Keep it safe and, above all else, never, ever disclose its location. I don’t care how sad or pitiful or upset the people in your family are or how distressed your best friend is, do not share.

This is your life line to sanity.

3. Coffee. It’s the life’s blood of my people.

It’s the magical, cure-all elixir every traveling snake oil salesman and Side Show Bob wishes they had invented.

It’s essential as the air we breathe. Take it away at your own peril.

If I were one to use this phrase, I would insert a “’nuff said” right here.

4. Alone time. Frequently, you’ll hear this described as “me time” or “time for myself.”

When some tiny woman in head-to-toe coordinated workout wear is trying to convince you hot yoga is all you need to feel good and possess unlimited energy, just smile and nod.

You can make fun of her later while you’re pouring yourself a cup of coffee, eating some chocolate and talking to your best friend on the phone in the bathroom, which is also known as my hiding place.

5. A best friend.

They come in all shapes and sizes. They’re found in all kinds of places. They say cheesy things like, “They’re totally aces!”

For the special needs mom, best friends are lifesavers.

When you have an argument with your husband, they’ll back you up. And they’ll never judge you the next day when you say you can’t imagine being married to anyone else.

They’re the ones who are there with a laugh just when you need it, and they cry with you when your heart is broken. Because that’s what friends are for. (There’s a little Dionne Warwick flashback for you.)

Best friends are hard to find. They’re more valuable than chocolate, coffee and especially hot yoga, whatever that is.

Beth Clay the mighty

Follow this journey on Speaking in Grace.

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. 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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They Tried to Keep This Fighter With Down Syndrome Out of the Ring

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Five years ago, Garrett “G-Money” Holeve stepped into a Mixed Martial Arts (MMA) gym with his father in Cooper City, Florida. Ever since, fighting has been a passion for the 25-year-old, who has Down syndrome.

I fight because it makes me happy,” Holeve told ESPN. “It makes me feel good.”

However, despite his enthusiasm for the sport, many obstacles have prevented him from pursuing it.

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In August of 2013, Holeve was preparing to fight David Steffan, a fellow MMA fighter and former Special Olympian with cerebral palsy. Twenty minutes before the fight, the state of Florida served the fight promoter with a cease and desist order, subsequently canceling the event.

“He was devastaed,” Holeve’s father, Mitch Holeve, told The Mighty.

Despite the fact that both Garrett Holeve and Steffan had passed the necessary physicals beforehand, the state would not allow them to compete in a sanctioned MMA fight.

“There was a general fear in the community, especially on the regulatory end, that it wasn’t a good thing for the sport to have people with disabilities fighting, because, God forbid one of these guys get hurt, [they thought] it would be bad news for the sport,” Mitch Holeve told The Mighty. “It was discriminatory. They had labeled Garret with Down syndrome but didn’t even know what his ability was.”

Father and son got in touch with Disability Rights Florida and sued two of the state’s authorized sanctioning organizations for not complying with the Americans with Disabilities Act (ADA). Garrett Holeve testified in Florida District court that he had just as much of a right to fight and compete in MMA as anyone else. The legal battle ended in January 2015 — Holeve would have the right to fight.

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Garrett Holeve with his father, Mitch. Courtesy of Mitch Holeve.

Many came out in support of Holeve’s battle during the legal proceedings. The National Down Syndrome Society released a statement of support and even gave him their Self-Advocate of the Year Award. A Change.org petition for his cause received nearly 125,000 signatures.

“Everybody deserves the right to pursue their passion,” Mitch Holeve told The Mighty. “We’ve never treated him any differently, so when he’s denied his right to be like everybody else it hurts him.”

Now, finally, after two years of legal battles, Holeve will have his fight. On July 11, Passions Night Club in Hollywood, Florida, will host Holeve and Steffan in a sanctioned MMA fight.

“He’s excited. He’s thrilled to have the opportunity to fight at home. It’s been his dream for two years now. He really wants to show everybody what he can do,” Mitch Holeve told The Mighty. “It’s recognition of what they’ve achieved.”

Check out some more photos of Garrett Holeve below: 

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Courtesy of Mitch Holeve.
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Courtesy of Mitch Holeve.
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Courtesy of Mitch Holeve.

Below is the full feature ESPN did on Holeve: 

For more information on the fight or on Garrett Holeve’s journey, visit his website.

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The Wonderful Way This 8-Year-Old Is Honoring His Best Friend’s Life

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Connor Herrero and Connor Jacobs shared a first name and an inseparable bond.

So when Jacobs, who lived with cerebral palsy and was nonverbal, unexpectedly died in May, Herrero knew immediately that he wanted to do something big to honor his best friend’s memory.

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Connor Herrero, right, and Connor Jacobs

We loved each other as much as the universe could take. Basically we just could not be separated,” 8-year-old Herrero told AL.com. “The day I heard about when he died, that’s when it struck me our hearts are too strong to be broken. I just really miss him and I’m sad that he’s gone.”

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Connor Herrero

Herrero and Jacobs had dreamed of one day playing on an inclusive playground together, but none existed near their home in the Pelham, Alabama. So, in honor of Jacobs, Herrero set out to fundraise for Carly’s Clubhouse, a fully accessible playground that’s currently in the works.

The playground will stretch 30,000 feet and will feature cooperative games, sensory rich activities and quiet areas to ensure children with and without disabilities and their families can play together.

Playground

To help raise money for the playground, Herrero organized a campaign where students at the local elementary and middle school could pay $1 to wear a hat to school. He raised $755 between the two campuses, AL.com reported.

Herrero is now on the Carly’s Clubhouse junior board, which aims to work with the city to raise the $800,000 needed to fully fund the playground. With help from his mother, Ashlea Herrero, Connor Herrero also set up a GoFundMe page in the hopes of raising $20,000. So far, the page has raised just more than $1,700.

I want to do it because he was my best friend and we never got to play on playgrounds together,” Herrero said, according to his GoFundMe page. “And Carly’s Clubhouse… when it is built, me and Connor could’ve played together and could’ve played with typical children like me. And if another friend has a disability, they can go there and play.”

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To learn more about Carly’s Clubhouse and contribute to Herrero’s campaign, check out his GoFundMe page.

All photos courtesy of Ashlea Herrero.

RELATED: “The Latest Inclusive Playground to Open Is All Kinds of Magical

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The Letter I Want My Daughter to Read If She Gets Bullied

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The issue of bullying and kiddo meanness surfaced when I recently talked to other special needs parents. It made me realize our battle against bullying may be a tough one, but it’s one I know we can win together.

The other day I was swapping stores with a friend whose child also has some physical limitations. She shared that her 4-year-old was made fun of in a bouncy house because she didn’t “hop like everyone else.”

Is nothing sacred anymore? 4 years old?! A bouncy house, for god’s sake?! What is this world coming to?

After we had that out of the way, we moved on to how to parent during that tough, horrible moment. We agreed the best course of action is helping your child, your baby, through the bullying just as we were helped by our loved ones.

One hard lesson I’m going to need to learn as a parent: Kids get picked on. It doesn’t matter what you do to protect them; it’s bound to happen at some point. And I think our job as parents is to help them learn from it, to treat others with respect and to move on and be stronger because of it.

To my own baby girl, I hope you read this one day and know your mom truly gets it.

My Dear Olivia Michelle, 

This letter is for you to read when you’re sad and feel alone, like the world is against you.

You are not alone.

I was picked on. A lot. The random person standing next to you at the store was also picked on.

One day, you’ll find people who love you for who you are, I promise.

When you’ve had your feelings hurt, there is nothing to be embarrassed about. I know because I’ve been there. Not because of spina bifida or some other disability; just for being a kid who was different in some way from everyone else.

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Exhibit A that Mom “gets it”:

In fourth grade, I got glasses six months into starting a new school. I went from semi-popular to bottom of the barrel practically overnight. My “friends” wrote a play about me where I got beat up (perhaps worse, I really blocked out the details), and I didn’t go to my last two weeks of school because they made me feel so horrible. Then we moved back to Illinois. (Yay!)

This photo is from 1992, pre-glasses. I can’t find one from the time post-glasses. (I probably didn’t want to take them after the play was written.)

Exhibit B:

During school my nickname was “Chewbacca”  like the character from “Star Wars.” Funny, right? And now it may even be cool, but this was way before Star Wars was cool. I got the name because I had dark hair on my arms.  No seriously. That happened. By my friends — people I actually liked (and still do like).

So what’s the point of sharing these two examples (of many more)?

Because you will thrive. Each time you encounter a stumble, you will get back up. Children can be cruel, mean and vicious. But they’re also loving, caring, developing, nurturing and supportive. For all the mean I experienced, there was always good.

And remember, sometimes a friend can hurt your feelings but still be part of the good. Don’t forget that either.

Forgive as much as humanly possible.

Find the good, baby girl. It’s there, I promise.

Find what makes you happy, and never be anything other than you.

For all the tough days, there will be so many days of light. I can’t wait to help you discover them.

This message isn’t just to my Olivia. It’s to all children bullied, picked on and just feeling down. You will get past it. You will. Don’t let the bullies and meanies win.

I love you,

Mom

mom and daughter

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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