For one autism mom, Sesame Street’s new autism content really hit home.

Mama Fry, a popular blogger who writes for The Mighty and also on her own site called Autism With a Side of Fries, joined her voice to the many who have been talking about Sesame Street’s new autism initiative. Mama Fry posted to her Facebook that the show’s animated short, called “Benny’s Story” was the coolest kid appropriate way to explain autism.

In the animation, which was created and voiced by a man with autism named Shane MacKaskle, a boy named Benny explains in his own words what having autism is like.

 

 

Many times I will hear from folks, “How do you explain autism to a child?” Well here is the probably the coolest kid…

Posted by Autism with a side of fries on Monday, October 26, 2015

 

Read the full text of Mama Fry’s Post below:

Many times I will hear from folks, “How do you explain autism to a child?” Well here is the probably the coolest kid appropriate clip that does just that called “Benny’s Story” from the Sesame Street‪#‎SeeAmazing‬ autism initiative.
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It is an animation created & voiced by Shane Mckaskle. Shane, who has autism, created the video through Exceptional Minds, a nonprofit vocational center and animation studio for young adults with autism to develop their artistic interests. And his classmates all pitched in to help bring his experience to life! Please watch, like, and share!

Watch Benny’s Story below: 

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Our 1-year-old son, Calvin, is paralyzed from the waist down and uses a wheelchair to get around (and get into trouble). We decided to incorporate his wheelchair into his Halloween costume because he likes candy as much as any toddler and needs a way to get to the front door! Using just a cardboard box, some spray paint and yellow duct tape, we transformed Calvin’s wheelchair into a John Deere tractor that is the envy of every trick-or-treater.

After spending a magical week on Grandpa’s farm, it became clear Calvin needed to be a farmer for Halloween. And what’s a farmer without his trusty tractor?

Using 2 cardboard boxes, 2 paper plates, some extra tires from our stroller, a $2 plastic plate from Target, spray paint, duct tape, some nuts and bolts and scraps of wood, we created tractor that has quickly become Calvin’s most prized possession.

We cut the big tires so they popped perfectly under his hand rails — no attaching necessary, and they easily pop in and out in case it rains, or we want to go somewhere without giant tractor tires. And we attached the paper plates to the cardboard using a large bolt, mostly for cosmetic purposes, likewise with the small tires.

The yellow and black are duct tape, and the exhaust pipe is a paper towel roll with the bottom of a Sonic cup on top, all wrapped in duct tape.

We attached the box to the wheelchair by first attaching the box to a thin piece of wood with drywall screws. We then attached the whole contraption to the wheelchair with two U-bolts. For the front tires, my husband, Nate, drilled two holes into a block of wood, then we popped the tires off our stroller and into the block and attached that to the box with a long, thin piece of wood. The whole front easily comes off, just in case Calvin needs to make a quick getaway (or we want to go somewhere without a giant tractor attached).

The steering wheel is a plastic plate with a hole drill in the middle; it’s attached with a long bolt. We made sure it spins, and Calvin loves it. The last part was wrapping the visible orange frame with duct tape (folded over so no sticky part actually touches the chair.) It was almost too cute to behold.

Calvin was pretty excited the first time he saw it all put together. Dad showed him how to drive it, and it wasn’t long before he took off.

We wanted to make his costume functional — it’s a little more difficult to turn, but other than that, he can navigate around in his chair with no problem. I thought he would crash and smash it all in about five seconds, but he’s been surprisingly aware and careful with the extra two feet of vehicle in front of him.

When our 3-year-old neighbor saw it, he said, “Wow Mom, look at that cool tractor!” Pretty much all the little boys are jealous.

Sometimes other kids are afraid or unsure of Calvin’s wheelchair, but when it’s decked out in an awesome costume, they’re able to see Calvin as he really is — just a normal kid who uses a wheelchair instead of legs and is super excited for all things Halloween.

He’s got the farmer’s wave down… He looks just like his grandpa and great-grandpa!

We used mostly what we had lying around, and the whole thing took only a few hours and about $20.

We have one happy farmer, and a Halloween win!

Follow this journey on Life Is a Bowl of Candy.


For a long time, I had difficulty answering a question that centered around the fact I received an autism spectrum disorder (ASD) diagnosis at the age of 30. It’s a question I get on a regular basis: “Why would anyone would seek an ASD diagnosis as an adult? If you’ve made it that far, what’s the point?”

Finding the right response has been tough because people asking this can have a wide variety of intentions. Some people are simply curious. Some are skeptical. Other people are asking for themselves; they feel they may be on the spectrum and are sincerely interested in finding out whether or not they should pursue a diagnosis.

Over time, the more I engaged this topic, the more I realized my answers were always the same, no matter how or why the question was asked. In each case, I found myself returning to the same two basic ideas.

Why seek a spectrum diagnosis as an adult? If you’ve asked this, or know someone who has, here’s what you should know:

1. Self-knowledge makes it much easier to navigate life.

I believe we are born into identities and roles that the world forces upon us and pressures us into accepting. Examining our own nature and stepping outside of artificial social masks can be a valuable, necessary experience. And that’s as true for those on the autism spectrum as anyone else.

I think some people have a hard time seeing the value in this when it comes to the spectrum. Far too many people still view autism through the lens of negative stereotypes; they see autistics as being “shut down,” “living in their own world,” always the same and never changing. In fact, individuals on the autism spectrum have rich internal lives. We grow. We think. We change. And if someone on the spectrum reaches adulthood without a diagnosis, a huge amount of personal growth can be obtained if they are allowed to seek out more information about autism and how it might relate to their own experiences.

2. If you are on the spectrum, but undiagnosed, it’s easy to develop coping strategies that work against you.

This point is even more crucial than the first one. Not having an ASD diagnosis until the age of 30, I tried to deal with social challenges in ways that ended up doing more harm than good.

I felt pressured to hide differences. I put a huge amount of effort into “blending in” with others, concealing my social confusion and sensory pain. To some degree, I did manage to “blend,” but the end result was a lot of anxiety, depression and self-loathing.

Learning to mimic a narrow range of body language and conversation didn’t make life easier. It just became a grueling obstacle course that never seemed to end.

Only when I finally received a diagnosis was I able to piece together the specifics of my issues with social pragmatics and sensory issues. Only then could I develop new, beneficial coping strategies that were based on an understanding of my nature. These coping strategies massively improved the quality of my life.

Adults and autism diagnoses: What’s the point? The point is self-knowledge.

And the point is giving yourself a chance to dig out of toxic, maladaptive coping strategies. Lacking an accurate diagnosis just makes it so much easier to get mired in false ways of living. And in place of that lack, the world will always pressure you to be something you’re not.

Follow this journey on Invisible Strings.

Lead photo source: Thinkstock Images


Dear Teisha,

When you were diagnosed with multiple sclerosis (MS), the news was unexpected and devastating. But I reassured you that MS doesn’t signify the end. This new journey will be filled with incredible experiences. At the same time, I was up front by warning you there would be challenging times ahead.

This morning, such a time truly arrived. You’re not even properly awake, and you start punching something hard in your bed. You can’t work out what it is. Then your stomach drops. You realize you’re hitting your leg. Yet it’s numb. You can’t feel it. Worse still, the other leg doesn’t want to move, either.

Within a few hours, you’ll be in a hospital bed. It’s a shock. Lying under fluorescent lights in a sterile environment. Surrounded by beeping machines, tubes and strangers while grimacing in pain. I know you hate needles, and you’re now in a constant state of queasiness.

It’s not just your physical surroundings. It’s the reality of this new level of dysfunction. You look at your legs, and they feel disconnected. Over the coming weeks, you try so hard to will your toes to move. But no matter how much mental energy you channel, your body is non-responsive. It’s unbearably deflating. You feel claustrophobic and trapped in your own body. You’re worried you will never walk again.

Emotionally, you also struggle with this new level of dependency. You have valued your independence in your mid-20s. Studying, establishing a career and planning for the future. But now, none of this seems relevant. You despise not being able to function without assistance. Negotiating bed pans, being bathed and dressed. The thought of requiring this level of care for the rest of your life is nauseating.

During this time, MS becomes your identity. The hospital environment encourages you to become one with your disease. Interactions are based on what you have, not who you are.

For example, your doctors (fortunately, not your neurologist) do their rounds, test your symptoms, talk about you among themselves, write notes but rarely share their insights or ask how you’re feeling.

Your nurses usually don’t modify their interactions based on the individual. They talk loudly and simplistically, assuming your impaired mobility has impacted you cognitively.

Medical students eager for you to recount your medical history take note of your every symptom and practice their neurological-testing skills.

You begin to think, “I am MS.” You feel invisible. You withdraw. You lose your voice. You wonder whether anyone can see you — the person, not the symptom or disease.

If I were there, I’d ask you to repeat this phrase over and over:

“I am more than my disease. MS may be the reason for my stay. But it does not define who I am.”

I could spend my energy telling others of your attributes, achievements and dreams for the future. But when you’re lying in the hospital and feeling overwhelmed by your situation, it’s more important for you to remember you are more than your disease.

Teisha Rose.2-001

Next week, you will overhear doctors talking to each other: “At least she can use her arms.” “The relapse is aggressive.” “Damage may be permanent.” These words will create unbearable anxiety and fear.   

But remember, “You are more than your disease.” These doctors can’t see your tenacity. Your determination. Your fight. Such qualities aren’t quantifiable. They don’t appear on neurological tests, nor are they considered when prognoses are inadvertently delivered.

When faced with a hospital stay (sorry there will be a few more), the qualities you’ve displayed in all aspects of your life won’t abandon you. These qualities define who you are. Not MS. And these qualities will influence your recovery and how you respond to any of life’s challenges.

The next few months are going to be tough, but you will get out of bed, out of the wheelchair and walk again. It’s going to be a grueling process, so here’s an incentive to keep going. Next year, you celebrate your good health by immersing yourself in the freedom of travel. You will experience new cultures, meet new people and be surrounded by new beauty. You’ll reclaim your carefree 20s and overcome your memories of this hospital stay.

Be inspired, be excited and keep remembering you are more than MS. It may be a part of your story. But it does not define who you are.

From,

Teisha (15 years older and wiser!)

Follow this journey on Lives Interrupted.


Driving home the other day, I thought about my post-traumatic stress disorder (PTSD) diagnosis, and all the shock and shame that came with it.

I thought of subsequent visits to therapy and all the prescriptions I’d filled.

I thought of how often “experts” talk to us — those with PTSD — one by one. How we sit in the same chairs in the same offices and they listen to us, but we don’t get to hear each other.

It tricks us into thinking we’re alone.

People with PTSD have almost always been in total silence, shame and isolation outside of clinical settings or cyber chat rooms.

But things are changing. We’re coming out of the shadows. We’re using our voices. We’re saying, “Here we are” and claiming our role as experts, knowers and truth-tellers. We’re bonding as rape survivors, veterans, adults abused as children and those who lived through horrific car accidents.

We’re starting to notice, nod at and bear witness to one another.

But even so, too often we speak in whispers. We hesitate and stammer and apologize.

How could this change?

How could things be different, better and easier from the get-go for those receiving a PTSD diagnosis?

What if instead of just pills, pity or pamphlets we got a letter or a hearty handshake, too? What if we got a talking to from someone who’s been there and walked the same road?

What if we got a mentor?

What if we gave and got letters, notes and messages from the been-there tribe?

Dear Kick-Ass Warrior,

You survived something that tried to snuff you out. It didn’t. Congratulations.

P.S. You have PTSD.

Wouldn’t that be a little bit better?

What if we were that real, irreverent and honest?

What if we shared survival recipes, tools and secrets?

I know it’s been epically hard and you’ve battled – are still battling. There might have been times you wished you didn’t live, but you kept at it. That’s how gritty you are and I’m so glad.

What if we said all of the unsaid things we feel, think and notice?

I know the blood isn’t dry and the wounds are still gaping.

I know it’s been forever and still feels fresh and raw.

What if we said it all without censoring or apology? What might our words do for one another if we gave them freely?

I know you feel weak. I still think you are stronger than steel. Rest up.

Let me tell you what I see – your bravery is staggering. Go you.

Your victory was unlikely. The odds were stacked against you. Trauma raged and furied and slammed your life and you’re still here. Wow.

What if we gave each other permission to swear and rant and be angry?

F*ck. F*ck. F*ck it hard and often. Go to hell. It hurts.

What if we admitted it all?

F*ck-yeah, I’m angry and sad.

Your scars and injuries will not scare everyone forever.

Not even you.

And what you are now is beautiful, needed and meaningful.

Can you see me cheering, roaring and on my feet for you?

You are not damaged or broken beyond repair. That awful feeling is just a feeling.

And it can change.

Let’s say true things and be a lifeline to one another. No sugar flower BS or sing-song sunshine when it’s raining inside. No platitudes. Rainbows will return, but it might be stormy for a long time.

Keep going. Hang on. Trauma tried to kill you. It didn’t. That alone makes you all kinds of amazing.

Trauma sucks. You don’t.

I believed for so long the best I could do was manage, gut it out and suffer with some grace.

I gave up on happy, peace and love.

I gave up on people and myself.

I was wrong. I was wrong about all of it. I love life and myself now.

You might be wrong, too.

Someday, you might even say, “Congratulations warrior – you have PTSD.”

And you won’t feel pity or shame.

Not a bit.

None.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.


Dear Parent-to-be,

Welcome to the first day of the best of your life.

There are so many things I want to tell you, I’m bursting. I’m so happy for you that I’m not sure where to begin.

Perhaps I should start with the words the social worker said the moment she placed my son, Charley, in my arms 25 years ago. He was 2 months old then. “Get ready for more love than you will know what to do with,” she said.

I didn’t know it then, but she was right. There are no words to describe this kind of love.

How can you verbalize the magic of those eyes that look so deep into your soul, even you never knew how deeply you existed? It will happen, and you, my friend, will open up like you never have before. Life won’t look the same as it did before.

Your life is about to change. Every parent is forced to change routines, priorities and all the things that go with them. But there’s so much more because the change you’re about to experience is a change in you. A reinventing so profound you may not even see it for years to come, and here’s the wonder of it — it’s coming from the one source who wouldn’t change you for the world.

Although there have been great strides made in awareness of Down syndrome, you may be shocked by the insensitive remarks of others. Or, as one woman said about our Charley, “He’s damaged.” There will even be uninformed comments such as, “Is he still Downs?”

I don’t know how many times I’ve sat in a doctor’s office, only to have some parent shield their child from mine, as if his Down syndrome is contagious. You may see fear on their faces and pity in their eyes. And you will shake your fist at their ignorance. Then, just as angry as you feel, you will find yourself feeling sorry for them. Pity those who don’t know the unbridled heart of Down syndrome; they could use a dose of what you live with every day. Believe me, most people are curious and wouldn’t hurt you or your child for the world.

My husband and I are acutely aware of the gift we’ve been given. Each time we’re knocked down by this thing called life, all we have to do is look at Charley’s face. We see God there. His affirmation. His endless hugs that wrap around us like a warming blanket. His smile that says, “You are still OK with me.” His words that say, “I love you much.”

So often I feel unworthy of him. I believe Charley is exactly who he’s supposed to be — a person who calls those around him to open their hearts. To accept others just as they are. I believe that when God bestows that extra chromosome, it’s His way of saying, “You only think you know what matters.”

People often say we must have incredible patience to have chosen a “child like that,” but they would be wrong. It’s our son who has taught us patience. He had to be patient with us while we learned what it meant to be his parents.

You may have to defend your decision to adopt. I don’t know how many people tried to talk us out of it, but there were several. We’ve heard it all. “Are you sure you know what you’re doing?” “It’s still not too late to change your mind.” “Why would you put yourself in that position?” “It’s a lifetime commitment, you know.”

I won’t lie to you, it’s not an easy journey. It’s not for everybody. It’s a life that demands all of you, 100 percent. You will be tested, sometimes daily. Some days you will know a lot. Other days, you will wonder if you know anything at all. And just like any other parent, there will be those moments when you will want to pull your hair out. But then, just when you need it the most, there will be that hug around your neck, and that sticky kiss on your cheek that will pull you back from the edge. Those are the moments when your child’s eyes will melt you like butter, and you’ll wonder how you ever lived without him (or her), or if you ever could.

The good news is that much has changed for parents of people with Down syndrome since we adopted Charley. There are systems in place that weren’t there before.

There is a community of families who reach out to each other and offer their experience, strength and hope. There are associations, blogs, Buddy Walks, Special Olympics and a host of families on the Internet. Don’t be afraid to reach out. These are the people who will offer you the hand of friendship and much-needed social connections.

I could go on and on, but I’ll leave it at this: When you’ve had this gift in your home, when you’ve been loved like no love you’ve ever known, when you’ve had your soul opened up, don’t forget to pay it forward. There are people who need your story. Help them to know your child. Help them see what you see.

The words I heard 25 years ago still echo in my thoughts today. They’re the words I now say to you: “Get ready for more love than you will know what to do with.”

Welcome to the first day of the best of your life.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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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