Did You Know ‘Arthur’ Had a Character With Asperger’s?

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The PBS Kids show “Arthur,” which follows the adventures of a cartoon, glasses-wearing ardvark, once explained Asperger’s syndrome in a way that children can understand.

A 2010 episode of the show, called “When George Met Carl,” has resurfaced online thanks to the Ruined Childhood Tumblr account. In it, a character with Asperger’s syndrome named Carl is introduced, BuzzFeed reported.

In an effort to understand Carl more, the character George asks his friend Alan about Asperger’s. Alan responds that his uncle has Asperger’s, and goes on to describe how his uncle has explained the condition to him in the past. The analogy Alan uses is that of an alien planet with different customs and behaviors that his uncle can’t always understand, but over time he has learned to adjust to it and make sense of it more and more.

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Imagine you’ve crash-landed on an alien planet,” Alan says in the video below. “It looks like Earth, but there are lots of differences. For one, a lot of people seem to talk really loudly. And even though you speak the same language, you sometimes have a hard time understanding what they mean.”

Check out a clip of the episode in the video below: 

h/t BuzzFeed

 

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Here’s the Thing About My Son’s Wheelchair: It’s Alive

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Here’s the thing about my son’s mobility device: sometimes, it feels a bit… alive.

I mean, I know in my brain that Simeon’s wheelchair isn’t actually alive, but way down deep in my heart, where I keep all the feeeeeeeelings, I totally believe it is.

Maybe it’s because my son never attached to a binkie or a lovie or any other cute little baby item. He never snuggled a blanket into sloppy oblivion from years of gummy affection and drool. He didn’t drag a teddy around the house or cuddle up with a stuffed rabbit (who became “real” after surviving a scarlet fever outbreak and being thrown away in the trash — but that’s a story for another time). Point is, nothing was by his side through thick and thin, during those first few years of life.

Unless you count the wheels.

I remember when they arrived in the mail, passed along to us by a family in Minnesota whose daughter had outgrown them. We sat him in the snug foam seat and placed his squishy little palms on the wheels, moving them back and forth as he watched us uncertainly. He sat in it all evening– even ate his dinner in it. He wasn’t going anywhere – not yet.

And then, a few hours later, he moved.

He wheeled up to the large wooden door of our dining room chest, the place where we kept our wine glasses and cork screws and fancy dishes. He pulled it open, maneuvering his wheels this way and that, figuring out how to bring his little face in close to the musty dark interior while making room for the wide swing of the cabinet door. He looked inside. He snatched up a little shot glass, turning it over in his hands, all while I sat on the floor taking pictures and beaming like my heart would burst.

It was the first time my 11-month-old was able to act on his curiosity – the first time he had the means to act on his wonder.

It was the start of a grand new chapter in my son’s life.

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But that was years ago. And babies get bigger and blankets fray. Teddy bears lose their stuffing, and wheels that once fit start feeling a bit too snug. Simeon had a good run with those wheels, but a few months ago, we knew we were at the end of the road. His legs are so long now that his feet almost touched the floor. The seat was too tight, and he preferred his big boy wheelchair. My husband and I went back and forth. Maybe we should keep it a few months more? His feet don’t quite touch the floor, they just almost touch the floor. Maybe his sister can use it? But we knew it was time.

So I messaged a fellow spina bifida mom, made the arrangements and headed to the FedEx store.

The man behind the counter set Simeon’s chair on his scale. He told me how much it would cost to ship and pack. He took my credit card and passed me a receipt to sign. “Thanks, you’re all set,” he said, giving me a little wave of dismissal.

And I just stood there with my mouth bunched up and my eyes wide and watery and my voice all pathetic saying, “You’re sure you don’t need anything else? I mean, you’ll make sure it gets there OK?”
I ran my hand along the foamy seat and felt the bumpy wheels under my palm.

“It’s just that… it’s really important to me.”

Here’s the thing about my son’s mobility device: sometimes, it feels a bit… alive.

Alive like something full of memories and joy and trouble. Alive like exploration and adventures. Alive like banging into walls and wheeling into ankles and chasing your dad down the driveway. Alive like crying in front of the FedEx guy, telling him to please take care of this thing that helped my son open a big wooden cabinet and grab a shot glass – this thing that took his curiosity and turned it into action.

I know in my brain that Simeon’s wheelchair isn’t actually alive, but way down deep in my heart, where my memories live and the FedEx guy can’t see, I totally believe it is. And one of the great things about being alive (and things that become real, like wheelchairs and Velveteen Rabbits) is that each chapter leads to another.

So we’ll turn the page and say farewell, old pal. Best of luck on your next adventure.

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The Velveteen Wheelchair now resides in California with our pal Maddux.

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You can follow Maddux’s adventures on his blog and Facebook page. You can learn about making your own Bumbo Wheelchair here.

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“‘Real isn’t how you are made,’ said the Skin Horse. ‘It’s a thing that happens to you. When a child loves you for a long, long time, not just to play with, but really loves you, then you become Real.’

‘Does it hurt?’ asked the Rabbit.

‘Sometimes,’ said the Skin Horse, for he was always truthful. ‘When you are Real you don’t mind being hurt.’”

— Margery Williams, “The Velveteen Rabbit”

This post originally appeared on What Do You Do, Dear?

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Why This Drawing Is Just as Important as the Medications for My Daughter

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This drawing looks like an illustration from a children’s picture book. The spunky heroine scores the perfect pair of shoes! Some may wonder why shoe shopping would be part of a children’s story. A bit materialistic? And what’s all that stuff on the girl’s head?

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The girl in the story is wearing feathers and bows in her hair. Why not? There’s a tiara, too, because she’s unapologetically 100 percent princess. She’s enjoying a day out with her grandmother.

The illustrator is our talented friend, Christine. The storyteller is my daughter, Julianna, of course!

In real life, Julianna has never worn a pair of “normal” shoes. She has a terminal neuromuscular disease and hasn’t stood for over a year. She also can’t breathe on her own and wears a mask that forces air into her lungs every minute of every day. As a result, she rarely leaves the house or even her room.

Julianna’s mind is as sharp as her muscles are weak. She’s happy almost all of the time, but she knows what she’s missing. She knows there’s a world outside of our doors, and she remembers when she was able to go out into it.

A few times, we have had this conversation:

J: I don’t feel like I have a life.

M: What?

J: I don’t go anywhere. I don’t do anything.

With my heart sinking, I explain all the reasons why we can’t get her out of the house more and promise to try harder. There’s no condemnation in her words, though. They are simple, stated facts. She already knows and accepts. But she wishes that it were different.

With her imagination, it’s different. Her brain is always going and going and going (her words), and it takes her on fantastic adventures. In this story, she and Homie go on a shopping spree. They buy shoes and chandeliers. They eat at Red Robin and see a movie. The Julianna in this story doesn’t need five different pillows and a special positioning device to sit up. There are no feeding tubes or BiPAP. Anything is possible.

This drawing, you see, is not just a cute picture. It’s just as important as the medications and treatments. The medical stuff sustains her life. This helps make it worth living.

These days, Julianna’s most frequent request is “play!” She gets through uncomfortable respiratory treatments if we play. She wants to sit up even though it’s getting more and more difficult because it’s easier to play. So we play and draw and we sing and dance. Julianna’s imagination is infinitely more powerful than her disease, and she is surrounded by people who let it soar.

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Follow this journey on Julianna Yuri.

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To the Doctor Who Claimed My Son’s Autism Was a Social Construct

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When I came to you for a behavioral consultation, my son was 4. He wasn’t making eye contact. He threw tantrums at restaurants and parties when he became overstimulated. We boycotted all loud events. He had difficulty communicating how he was feeling. His fine and gross motor skills were delayed, and he wasn’t gaining skills at the rate of his male cousins.

I scheduled the consultation with you to discuss my concerns. You listened for two seconds and explained (hands extended and talking to me like a child) that my son’s brain was like a computer and that it was wired differently. You proceeded to tell me learning disabilities were a “social construct,” and my son was fine.

What you didn’t know is that my son has autism.

I knew better than to listen to you. I am his mother. I saw the frustration over communication. I watched him crawl under the table and cry when he was asked to write his name. I dried his tears when he had a meltdown because he couldn’t make his hands work together to create what he had imagined. I was the one who made social stories to help him learn to track with his finger while reading. I was the one who moved heaven and earth to help him learn to read and write.

Labels are social constructs, I’ll give you that. But without labels, we can’t identify who needs help. And without help, children with autism can’t learn social skills and get the support needed for academic success.

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I wish you could see my son today.

Because I didn’t listen to you, he worked with occupational therapists and speech therapists since kindergarten. With their help, he’s learning the self-regulation, fine motor skills and social skills he needs.

Because I didn’t listen to you, he can read at a high school level.

Because I didn’t listen to you, I know how to support his academic needs and advocate for other children like him.

Because I didn’t listen to you, I am hopeful he will be able to access a real career and quality relationships one day.

When you have a disability, it takes longer to gain the practice and skills needed to be successful. I didn’t need to wait for you to agree with me to give my son what he needed.

I hope I was not the only concerned mom who walked out of your office never to return. I hope there are no parents who agreed with your “social construct” mantra and failed to obtain help for their children.

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6 Ways to Build New Support When Facing an Invisible Disability

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Battling an invisible disability, especially for an ongoing period of time, can bring about many losses, limitations and changes none of us would choose to face.

It can be even harder to bear the adjustments when friends and family don’t seem to understand what we’re going through or why the condition isn’t getting better.

Sadly, because of this lack of understanding, many relationships can be broken. Frankly, sometimes loved ones don’t really want to work at it. Watching us hurt may be too painful, or they simply don’t know what to say.

Most of us are accustomed to relying on loved ones, work and hobbies to keep us active socially. When those aspects in our lives dwindle down or disappear, we’re left with a dilapidated infrastructure.

Here are six ways to build a new foundation of support and purpose when facing an invisible illness:

1. Loved ones

Friends and family may try to be supportive by saying things they believe will encourage us to fight harder. But it can be hurtful when they say things like, “But you look good” or “Can’t you just try harder?” These kinds of statements can leave us feeling as if they have no idea how hard we are fighting and how much we want our lives back. Subsequently, loved ones may avoid us to avoid confrontation or take our saying “no” to a holiday dinner personally. Inadvertently, we become “out of sight, out of mind.” No matter what the reasons, we oftentimes feel misunderstood, abandoned and forgotten. Sometimes we have to work at keeping those not-so-perfect relationships. Other times, we need to move on and find new relationships.

2. Medical teams

For many people living with chronic illnesses, tests, doctor appointments and treatments can be a routine part of our lives. Therefore, it’s extremely important to build a great team of doctors, counselors and/or practitioners who care enough to listen and are capable of digging deeper into our case.   

3. Social support

Finding a social outlet is crucial to combating loneliness. This can be found through a community center, club, church or support group where we can meet others facing similar challenges. Of course, it can be extremely difficult for some people to get out and about. So we can find ways that work for us, such as an online support group.

4. Purpose and passion

We must remember that even without our careers or other things we have lost that gave us identity, we all have purpose and value. Therefore, we must grasp onto knowing that no matter what, our lives have meaning. To find our passion, sometimes we have to pull out an old hobby or create a new one such as artwork, crafts or writing. We can also find gratification in reaching out to others or volunteering. Even if we can’t get out of our homes to help in a local soup kitchen, we can send encouraging notes in the mail, email, social media or in an online support group. Who we are is what we enjoy, what we believe and how we love. Although how we express it can be limited, it can’t be taken away.

5. Healthy living

Many people don’t think twice about the environment around us. Yet, it’s important for us to do our best to rid our homes and bodies of unnecessary chemicals. We can also seek out a healthy diet and nutritional plan, as well as address hidden food sensitivities, allergies or vitamin deficiencies. Being intentional about watching and listening to encouraging or funny things is another helpful strategy. Hope and laughter is good for the soul and the body. These things may not cure us, but we are giving our bodies the best fighting chance for optimum health.

6. Advocacy

Get involved in a nonprofit organization that speaks to your challenges. Support their cause. Tell others about their website and resources. Participate in their special projects.

2015 Invisible Disabilities Week, sponsored by the Invisible Disabilities Association, is a great way to get involved. The world-wide campaign for people living with illness, pain and injury takes place on Oct. 18-24.

There will be a week of activities, and people can participate online. People will have the opportunity to share their stories, as well as spread awareness, education and support through photos, videos and memes. This social media campaign will be on Facebook, Twitter and Instagram. Join us and see details at www.InvisibleDisabilitiesWeek.org.

Follow this journey on SherriConnell.com.

Lead photo source: Thinkstock Images

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To Anyone Considering Working With Young People With Mental Illness

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Dear doctor, psychiatrist, occupational therapist, nurse, manager, health care assistant or soon-to-be any of the above,

So you want to work with young people with mental health problems? Or maybe you already do. Either way, welcome to the wonderful world of child and adolescent mental health services.

You’re likely to be, or have been, met by a group of young people. Some of whom will be kind and nice and some of whom who will not. Don’t rule any of them out just yet. Even the nicest, kindest and friendliest people on this ward might have days where their illness gets the best of them. Mental illness blocks the light and makes pleasantries difficult sometimes.

If you’re boasting your experience is based on the fact you’ve “survived being a teenager” — stop. Yes, we are “average teenage,” but with acute and chronic illness that — were it anywhere else in the body — might lead to hospital tubes and wires. If today we’re ignoring you, please don’t take it personally. We aren’t ignoring you; we’re trying to ignore the demons you can’t see. Some illnesses can’t be helped by tubes and wires.

You’re going to work long hours with, I won’t lie, people who sometimes wished you didn’t bother. You’re an occupational therapist pushing a new group, a psychiatrist cutting a medication or a nurse saying no to leave. You might be sworn at. You might be insulted. But we need you to keep trying. We are the ones who’ve seen it all. Collectively, we’ve had abusers, attackers, family issues, health issues — the works. Don’t expect to be told you’re doing a good job everyday, but know you’ve done a good job when one of us can go our own way. Even if you can’t “cure” us, you can help us open the box, rearrange the pieces and fill in the gaps.

We need you to keep us safe until we can do it for ourselves. One day at a time. We can be unreasonable, illogical and our illnesses can be consuming, but we need to know, even when we shout, you’ll still be back in the morning. We need you to tell us you’re trying your hardest to make it OK.

So…are you in or out?

Follow this journey on The Upside Down Chronicles.

The Mighty is asking for the following: Write a piece to a specific group or person, telling them what you wish they knew about your mental illness. 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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