New Book Shows Kids What Happens When a Loved One Has Alzheimer’s

1k
1k

A new children’s book could help kids better understand why their loved ones who have Alzheimer’s disease or dementia act differently than they used to.

LR-RGB-LovelyOldLion

Written by Julia Jarman and illustrated by Susan Varley, “Lovely Old Lion” tells the story of a young lion named Lenny and his grandpa, King Lion, who has Alzheimer’s disease. No longer the playful grandpa Lenny always loved to play with, King Lion forgets names, doesn’t remember the rules to games and seems less interested in Lenny altogether. Confused and sad about what’s happening to his grandpa, Lenny turns to his friends and his grandma for help. Together, they all help King Lion by reminding him of good times past and encouraging him to play with them even when his memory isn’t clear.

page09[2]

Jarman, who lives in Bedfordshire, England, decided to write the book after a librarian friend told her there was a desperate need for books explaining dementia to children.

“So many children are feeling confused and upset because a grandparent is behaving oddly and even hurtfully, forgetting their names and not recognizing their faces,” Jarman told The Mighty in an email. “Many grandparents take such an active role these days, playing with grandchildren and helping with homework, so it’s very obvious when they stop.”

More than anything, Jarman wants children to understand that the changes in their loved ones due to Alzheimer’s disease are not their fault. She also hopes this book inspires young readers to do what they can to help, just as Lenny and his friends do for King Lion.

“They can’t cure dementia, but they can do something to make their [loved one] feel a bit better,” Jarman told The Mighty. “I just hope it does a little bit to help educate people and make them feel empowered to do something.”

page24[2]

Lovely Old Lion” is currently available for preorder and will be downloadable for Kindle on August 6. The book will be released in print in September 2015. 

Photos courtesy of Anderson Press.

h/t Day Nurseries U.K.

1k
1k
TOPICS
JOIN THE CONVERSATION

RELATED VIDEOS

When I Told My 4-Year-Old Daughter That Nobody’s Perfect

162
162

“I’m 4 today. I can’t walk. Will I ever walk?”

This was the first thing my daughter Julianna said when she woke up on her 4th birthday. A few seconds after the words left her mouth, she changed the subject.

juliana4

One of the most remarkable things about J is the way she accepts her physical condition. There’s no self-pity, ever. She knows all about the things she can’t do; she just doesn’t feel bad about it.

I wish I could say she learned this from me, but it’s quite the opposite. Today I’m able to read her words with just wistfulness. When I actually heard those words almost a year ago, I was gutted.

When your child has an awful disease, your heart can be broken in a million different ways. There’s the pain of unrequited hope when she doesn’t defy the odds. You ache — sometimes physically — when they lose milestones. And if the incurable disease becomes terminal, there’s despair. It’s too much for the already fractured mother’s heart.

I’ve been in all those places, and I know there will be more to come. For now, I’m in a better place. It doesn’t mean I’m at total peace with our situation. I believe there are some questions that cannot be answered on earth, and I still wrestle with the cruelty of it all.

The shift came gradually. As with most things related to J’s illness, I’ve found it best to follow her lead. She has the important things figured out. If she doesn’t mourn for a life she cannot have on this earth, how can I dwell on the what-ifs or why-nots?

My time here with Julianna is limited, and there’s so much more joy to experience. I’m grateful this is my focus now.

Below is a conversation Julianna and I had in April 2015:

J has watched “Beauty and the Beast” and now wants to role play.

Julianna: Mom, be Gaston.

Me: OK. Hi, I’m Gaston.

J: I’m 4 years old. I can talk, but I can’t walk.

M: Oh well… no one’s perfect.

J: But God made me perfect!

julianakitty

Follow this journey on Julianna Yuri.

162
162

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

6 Reasons Being a Single Special Needs Parent Rocks

1k
1k

Being a single parent is a tough task on its own, but being a single parent to a child with complex medical issues just makes it even tougher. I’ve always felt sad I had to handle everything on my own — until I realized it just makes me even more badass! I’m OK being single for the rest of my life, and I kind of look forward to proving I can do as well as any two-income home with or without a child with special needs. My confidence level has taken me almost three years to reach, but it’s a wonderful feeling to be where I am today with just my son and me. I believe if I can do it as a young, single mom, anybody else can, too!

Here’s a list of why I think being a single parent to a child with special needs rocks:

1. I get to make all of the decisions.

In my situation with my son, he does not and has never had a “father” in his life. Luckily, that means I’m the only one who chooses what I believe to be right or wrong for my son. I get to chose the school, the medication, the daycare, the respite worker and the discipline style. Plus I can co-sleep with my son without any complaint.

2. There’s twice as much love.

My son is the biggest cuddler ever. So I get all the hugs, snuggles and sometimes kisses I want without having to share. (I know… I’m selfish.)

3. The one-parent-only policy for hospital rooms isn’t a problem.

In all the hospitals my son has been admitted into, they have a strict policy about only one parent being in the room with the child. Luckily, I can be the one with my son the entire time to comfort him.

4. I’ve learned how to become an advocate on my own.

I thought my son and I would be treated better if I had a husband with me. Luckily, I’ve learned how to get taken seriously, and I’m constantly praised by medical professionals for how well I do as a young, single mom, given my son’s complex medical problems. I feel like being Ben’s mom is what I was born to do.

5. I’ve learned how to juggle.

Not literally juggle, but you sure have to learn how to do things without any help. I can take him to all his therapists, specialists, get medical supplies, basically be my kid’s secretary and manager, and then work and go to school full time on top of it all. But just to bring my cockiness down, I will throw in that my house is only ever clean for as long as one day a week.

6. I do all of the heavy lifting.

Literally. I can lift my 50-pound kid without flinching. I can also fold and pack my sons wheelchair in the trunk about 10 seconds. I’ve seen people’s jaws drop when they see how quick I am. I have wicked arm muscles and win arm wrestling matches all the time.

I know this list will not resonate with every person who may read this. But if it does reach out to one person feeling down about being a single parent, I hope I’ve helped you see there is so much positivity, even in situations that feel hopeless!

1k
1k
TOPICS
JOIN THE CONVERSATION

Lawsuit Filed Against Sheriff Accused of Handcuffing Kids With Disabilities

2k
2k

On Monday, August 3,  the American Civil Liberties Union (ACLU) filed a federal lawsuit against a Kentucky police officer for handcuffing two children with disabilities, according to the ACLU website.

Kenton County Deputy Sheriff and school resource officer Kevin Sumner allegedly locked handcuffs around the small children’s biceps at a school in Covington, Kentucky. The ACLU claims the experience was both painful and traumatizing to the children.

The lawsuit asks the U.S. District Court for the Eastern District of Kentucky to declare officer Sumner’s actions to be unconstitutional and a violation of the Americans with Disabilities Act, according to the lawsuit. It claims that the allegedly illegal handcuffing was an unnecessary and excessive use of force.

The ACLU released a video showing an 8-year-old boy shackled and crying out in pain. The video description says that he was left in that position for 15 minutes and that he was restrained because of behavior related to attention deficit hyperactivity disorder (ADHD) and a history of trauma. An unnamed member of the school’s staff took the video.

See the video of the incident below: 

The incident took place in November and the boy, a third-grader, is identified only as S.R. The lawsuit alleges that another child, a 9-year-old girl identified as L.G., was restrained in a similar way on two separate occasions because of behavior related to ADHD and other special needs.

Shackling children is not OK. It is traumatizing, and in this case it is also illegal,” said Susan Mizner, disability counsel for the ACLU, in a statement on the ACLU website. “Using law enforcement to discipline students with disabilities only serves to traumatize children. It makes behavioral issues worse and interferes with the school’s role in developing appropriate educational and behavioral plans for them.”

The ACLU is joined in the suit by the The Children’s Law Center and a Cincinnati law firm called Dinsmore & Shohl. The complaint seeks to change the policies by the Kenton County Sheriff’s Office in addition to requiring training for school resource officers in dealing with young children and children with special needs. It also seeks an unspecified amount of monetary damages against Sumner.

For more information, visit the ACLU website.

2k
2k
JOIN THE CONVERSATION

How I’m Showing the Side of Cancer That Brochures Leave Out

934
934

There’s something eerie about the way cancer survivors are portrayed. It starts with the smiling, hat-donning models that look out from rows of informational brochures at the cancer center. Touting headlines such as “Lymphoma and You” or “End of Life Options,” the brochures make for macabre advertisement.

A bright-eyed woman holding hands with a loved one on the cover of a brochure titled “All You Need to Know About Colon Cancer” seems to say, “Look how fascinating this cancer diagnosis can be! I’m looking forward to this process. You should, too!”

A stoic grandfatherly looking gentleman leans against a tree on cover of brochure titled “Understanding Your Prostate.” The look on his face seems to imply that he never wanted his prostate, anyway.

After the diagnosis of cancer, the next images that are typically laid out for public consumption are those of  “survivors.” You know the ones: pink hats, smiling faces and strength, strength, strength.

So here’s the deal: There’s a lot that happens in the middle. And it’s not all knowing smiles and pretty pink hats.

I understand why images of smiling, happy people are chosen for “the face of cancer.” No one would pick up a brochure with grandmother breaking down and mouthing, “Why me?” But I also believe it’s important to be honest and to be able to really prepare those who are on this path.

Cancer — and its treatment — isn’t pretty. Surviving means getting down to the core of being human with all the grit and grace that goes along with it.

This is why, on a cold day in October, my best friend and I ventured out into the woods to document “the middle” of cancer. At that point in time, I had completed five of six chemo treatments. I was not at my thinnest; I would lose another six pounds, require saline and blood to get through my final treatment. And though these photos would never be used on cover of a brochure titled “Breast Cancer and You,” they are reality.

Cancer is a brutal adversary. But there is beauty and strength in standing up to it – and being honest. I was here. This is part of my story, too. I am not afraid.

Heather Caro the mighty.1-001

Heather Caro the mighty.2-001

Heather Caro the mighty.3-001

Heather Caro the mighty.4-001

Follow this journey on My Life, Distilled.

Photo credit: Jennifer Borst

934
934
JOIN THE CONVERSATION

Why Phrases Like ‘Stay Positive’ Don’t Help My Life With Chronic Illness

4k
4k

I have had so many individuals question how I deal with the undeviating devastation of a progressive and fatal illness. When bad news seems to be a constant in my life, how have I not fallen into a deep, unfathomable depression. I have thought long and hard about this topic and found that the answer may have even surprised myself slightly.

What I had attributed to “always staying positive” during the turmoil that is my daily existence, turned out to be almost the exact opposite. I found I had the ability to keep my bubbly and lightheaded demeanor simply by not anticipating anything positive at all. In a nutshell, I always expect the worst and keep my expectations low.

While that sounds like a heartbreaking way to live, the truth is when  you’re dealing with a disease like systemic scleroderma, there truly aren’t many other options. Before jumping to the conclusion that I am a pessimistic, morose individual, let me explain my reasoning:

When navigating the devastation of a degenerative illness, you become familiar with phrases your loved ones or even complete strangers may send your way, such as “Dream, Believe, Achieve,” “Always stay positive” and “The best is yet to come.”

While these expressions come with good intent, I found none of them helpful in my situation; I could not simply believe my illness away. No matter how hard I dreamed of a functioning body and no matter how positive I stayed, my test results always presented further progression of my disease.

The company around me encouraged me to stay positive and have confidence that I would receive good news from my next round of testing, so each time I was presented with poor results, I was devastated. Each deficient medical result was another blow that took weeks to recover from. With this forced sunny disposition about an illness that is anything but, life seemed so bleak; constantly receiving information about the deterioration of my health when I was hoping for the exact opposite took a serious toll on my mental stability over time. I could no longer live like that — It was time for a change.

Chanel White the mighty.2-001

I had had enough of this “Dream, Believe, Achieve” perspective. It was unrealistic, and, frankly, counterproductive since a skilled physician had already expressed that this illness would take my life. Why would I stay positive for suitable test results when I knew they weren’t going to come? Why would I put myself through the torture of constant let-downs? Why would I submit myself to the torment of persistent disappointment?

Instead, I decided from that moment on I would prepare myself for the reality of my illness and acknowledge the desolation it would wreak in my life. I told myself then and there that I was no longer going to hide from my reality, but embrace the lifestyle that had been thrust upon me. No longer would I cower in fear of unpleasant results or the progression of my fatal illness. I would meet these results and new challenges head on!

While many people around me depicted this mindset as “pessimistic,” I utterly disagreed. I believed wholeheartedly that my view was one of acceptance, realism and endurance; what I liked to call “a realistic optimistic perspective.” With this new outlook in place, each of those negative test results or new symptoms that developed didn’t knock me back for quite as long. I felt composed, calm and prepared; I knew these results were coming and I wasn’t surprised. I still felt the tinge of disappointment, but no longer the devastation and horrendous sadness that used to accompany my results. While there were still some days that tears flowed down my cheeks, my recovery was easier. With the full acceptance of my illness, I was able to find more joy in my life and celebrate the small victories that manifested themselves; no longer in a constant state of mourning over my deteriorating health, happiness became easier to find.

I am in no way stating patients should halt their belief in miracles or that they should abandon their hope. I myself believe strongly in the power of miracles, however, I will not put my life on hold for something that may not manifest itself in my lifetime. I would much rather be prepared for the wreckage than live in fear of it.

Follow this journey on A Day in the Life of a Tube Fed Wife.

4k
4k
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.