The Person Who Taught Me That Even If You Can’t Speak, You Can Still Have Something to Say

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Even though I was in a multi-handicapped classroom growing up, most of my classmates had ADD, ADHD, dyslexia, etc., but few had an autism diagnosis. I didn’t a peer with autism until I was a young adult. Because of that, I grew up not really grasping how wide the spectrum of autism really is.

Then I learned about Carly Fleischmann, a 20-year-old nonverbal adult from Toronto, who’s one of the leading voices we have in the autism community today. Diagnosed with autism at the age of 2 , Carly has lived with an oral motor condition that’s prevented her from speaking. While going through therapies, like many of us do on the autism spectrum, Carly found her voice through the help of a laptop. Today she has conversations and shares her thoughts via her computer and iPad. 

The first time I heard about this profound individual was when her book “Carly’s Voice: Breaking Through Autism” came out in the fall of 2012. Until then, I mistakenly considered individuals with autism who were nonverbal as people on the low-functioning end of the autism spectrum. Carly helped changed the conversation for me. I was unaware, and Carly helped opened my eyes to the abilities and brilliance of not only those who are nonverbal but those on all ends of the spectrum.

Later I would become even more aware of some of the challenges those with autism go through when Carly came out with a website called Carly’s Caféwhich shows what an individual with autism can go through when experiencing sensory overload. Much like in her book, it opened up another lens to the already wide spectrum I’d been learning about.

That’s the message I hope to leave with you today. I hope you understand that even if someone is unable to speak, it doesn’t mean they can’t communicate. Currently, it’s projected that one third of children and adults with autism are nonverbal in our community, but today some of the most brilliant individuals I know are on that end of the spectrum.

It just goes to show you, “If you’ve met one person with autism, you’ve met one person with autism.” And if you’re nonverbal, it doesn’t mean you don’t have a voice and something to say.

This blog originally appeared on Kerrymagro.com.

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When You’ve Given Up Hope That Things Can Get Better, Please Read This Letter

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To the One That Gave Up Hope,

I remember our conversation like it was yesterday. I asked you a question that I don’t think you were ready to answer. Maybe it was too soon to ask. Maybe you needed more time to come to the conclusion by yourself. It was a question I asked countless others in different situations, but your response was the one that had me thinking the most. 

I asked, “Can you tell me about the positives?”

You wrote back, “What would that do? Instill a sense of hope that things will get better?”

It took me a while to respond to you after that. It made me think a lot about the struggle we all have to believe in one another; to believe that hope can exist in this world.

Everyone’s circumstances are different, but in a society where hope can seem unattainable, it can be easy to come to the conclusion that things can’t get better. 

For me, though, hope is something I think we should all aspire to.

It was my family’s hope for me, their determination to fight for me, that led to my progress. Accomplishments that may seem small to some — like getting a job, finding a girlfriend, graduating from school — were things I could have never imagined achieving while I was growing up. 

I was put through the ringer as a kid, but hope gave me motivation — the same motivation I have today. I hope to show others, through my story, that great things are possible not only for those with disabilities but for everyone.

If you ever come across this letter, I hope you reach out to me again and let me show you the reason why things will and are getting better. I want to show you, just like my family showed me, that hope is possible and that there is someone willing to fight for you. Some days will obviously be better than others, but if you take anything from this letter I wish it’s this… 

Never close the door on hope. 

Hope helps us push through some of the toughest times in our lives and gives us the strength to get to that finish line when we don’t think anything else will. We’re all human beings who make mistakes and have to live our journeys the way they were meant to happen. 

I wish I could give you that hope now. I have enough hope for both of us, and there’s someone out there in this world who wants to be with you every day. There’s someone out there who would go to lengths unimaginable to make you see hope.

So, please, the next time you give up hope and believe things can’t get better, remember this letter. Give hope a chance now, and I promise you, if I can be there to guide you, it I will. I hope you know that now.

“We must accept finite disappointment, but never lose infinite hope.” — Martin Luther King Jr.

This post originally appeared on KerryMagro.com.

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What I Think Every Person With Autism Needs in Their Wallet

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There’s no time more stressful and dangerous than the moment a person with a cognitive or social disability, like autism, meets a police officer. The Wallet Card is a tool to help a person with autism communicate clearly with law enforcement or first responders and safely disclose their disability so the officer knows how to communicate with the card holder.

The Wallet Card is the first product of the CLARITY Campaign and is a collaboration between Disability Independence Group, The Coral Gables Police Department and The University of Miami-Nova Southeastern University Center for Autism and Related Disabilities. The CLARITY Campaign started with independent teenagers and adults who have autism spectrum disorder. It promotes heightened communication between law enforcement and persons with disabilities. As the project grows, The Wallet Card will include other disabilities.

police officer looks at wallet card of young man

This unique campaign brings together three different perspectives: professional law enforcement experience through the Coral Gables Police Department to address real-life interactions, legal expertise through Disability Independence Group to ensure that the rights of persons with autism spectrum disorders are preserved through identification and education, and experience in outreach and support to the community of persons with autism and related disabilities through University of Miami-Nova Southeastern University Center for Autism and Related Disabilities. These perspectives ensure that the card will be effective for both the person with a disability and for law enforcement.

The Wallet Card is different from other cards because it is personalized by Disability Independence Group, Inc. It includes an emergency contact name, phone number and specific traits of the card owner’s disability but is not a substitute for a valid state ID.

The CLARITY campaign has two parts. Watch a video (below) that shows teenagers and adults how to safely interact with law enforcement and first responders and then order a free Wallet Card through Disability Independence Group.

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To the Strangers Who Called Out My Daughter's Name at the Zoo

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In the summer of 2009, my daughter, Julia, who has Asperger syndrome, was 5 years old. A neighbor and I had taken our kids to the zoo. It was pretty busy that day. At one point I realized we didn’t have Julia.

She’d gone to the bathroom with some from the group but had not come back with them. There were a lot of summer school groups there that day. We were in the Africa exhibit, an extremely large area of the zoo. Our group split up and started looking for Julia. When I asked strangers if they’d seen my little girl they said no and then joined us in looking for her. Zoo personnel were on their walkie-talkies.

It seemed like hours, but it was probably 20-30 minutes later that a zoo employee told me someone had found her. We rushed to that area. A mom had found Julia, who was obviously lost, and had taken her hand and kept Julia with her as she sought out a zoo employee to report having found a missing child.

I was and am so grateful to all the many strangers who were concerned and joined us in looking for my daughter. I’m also extremely grateful to that mom who took Julia under her wing while she searched for us. That day, in the midst of my being overwhelmed, I heard complete strangers calling my daughter’s name. There were so many helpers.

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The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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.

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To the Helpers Who Walk My Daughter Down the Hallway

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IMG_3742 I dropped my daughter off a little late to school today. Her aide, Lisa, met us at the main office and Erin immediately enveloped her in one of her signature bear hugs. Lisa hugged her back and told her their class was in the library, knowing that would make Erin smile. It did. As I watched them walk away hand-in-hand down the hallway I paused to take a picture. It was a moment I wanted to keep and carry around with me all day.

Driving home I thought of a story a friend recently shared. When her daughters were younger and they were upset about something bad that had happened in the city where they live or some place they heard of in the news, she would borrow a lesson from Fred Rogers and remind them that though frightening things happen it’s important to “look for the helpers. You will always find people who are helping.”

As a parent of a special needs child, the unexpected and the scary has happened, and I am always on the lookout for the helpers. I cannot get Erin, who has a form of autism, through her days without them. I need someone to walk her down the hallway and to her classroom safely, and when that someone takes the time to hold her hand and make her smile, my gratitude knows no bounds. This leave taking – the act of entrusting your child to the care of another is a rite of passage for all parents, but for those with children who cannot communicate the details of their days, it is a leap of unimaginable faith.

The Mighty recently asked readers to describe in one word what it’s like to be the parent of a special needs child. My word is “appreciative.” You appreciate the smallest things your child says or does – but you also appreciate beyond measure the people who come into your life to help. Over the course of Erin’s 13 years I’ve relied on a wide safety net of family, friends, doctors, specialists, teachers, aides as well as a long trail of anonymous men and women whose smile or passing kindness have softened the edges of our often rough and sometimes scary days.

A few years ago when Erin was 7, I lost her on Manhattan’s Upper West Side. My sister and I were shopping for her newborn and each thought the other had Erin. When we realized this was not the case, my heart stopped as I anticipated the sound of a car crash, had she wandered on to the street outside. As employees blocked the exits and conducted a frantic search, a woman in her mid-sixties suddenly appeared, asking if anyone had lost a little girl. She and three friends who were visiting the city had found Erin hesitating at the top of an escalator in a store next door. Erin, who remains fascinated by the movement of escalators but has trouble timing her step to board, was clutching a bright green t-shirt with a picture of Curious George. A tag from Gap Kids dangled from one of the sleeves. Finding Erin safely encircled by this group of women, I think I said thank you, though I may have said nothing at all.  They seemed to think nothing of it – good timing, glad they could help, happy to move along their way.

It took me weeks to recover.

I still get weak thinking about it – both the feeling of losing her – and the appreciation I felt for these complete strangers – these helpers who found her and took the time to find me.

They are everywhere.

Sometimes we know their names. And sometimes they float in and out of your day, your life so briefly, you barely get a chance to acknowledge them, let alone to stop and take a picture.

In either case their imprint and my gratitude will always be there.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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.

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To the Kindhearted Baker Who Helped My Son With Autism

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My son, Lucas, has autism, and his sensory issues and unwillingness to change his routines have made him a picky eater. If he likes a certain food, he doesn’t mind eating it every day. As a mom, though, I like for him to discover new things so he can have a balanced diet and also because being able to eat different things makes his life a whole lot easier. So every time he accepts something new, I cheer inside.

He’s often attracted to distinct tastes and odd combinations, so it’s not always easy to figure out what he might like. When he was around 9 years old, he insisted on an unusual breakfast every day. It consisted of brown gravy, which had to be prepared in a special way and be a certain temperature, and a bowl of Coco Pops on the side, served dry, which he washed down with a glass of orange juice. Hot salty gravy, dry, sweet chocolate cereal, and cold, tangy orange juice – a peculiar breakfast but one he liked, and I was happy he’d found something to please his palate.

The rest of us in the family usually have bread for breakfast, and every so often I’d offer Lucas different kinds to try. Suspiciously, he’d smell it at first, sometimes refuse it and at other times take a small bite. Occasionally, he’d swallow it with a look of discomfort on his face or simply spit it out. But then, one Christmas, he tried Swedish Christmas bread, Vörtbröd, which is a spiced bread made with rye and beer and sweetened with raisins. I know it sounds strange, but it actually tastes good. Lucas sniffed at it with a curious look on his face, and then he put it in his mouth, chewed it and swallowed it with a smile. Immediately, he asked for more. Bingo!

Xmas Voertbread

I was happy I could add another item to his menu. Since it was a seasonal bread and in the stores only around Christmas time, I stocked up my freezer. Lucas didn’t change his breakfast routine, but he did gladly add a slice of Vörtbröd to the menu. A few months after Christmas, my supply of Vörtbröd was all gone. I tried to entice him with other breads but to no avail.

When I was shopping for bread one time, I told the young baker how much my son with autism had loved his Christmas bread and that it was the only bread he’d ever eaten. I asked him if I could possibly have the recipe. He lit up and was delighted that my son loved his bread, and then he said:

Lucas “You probably have your hands full already. Why don’t I bake a large batch and keep it here in my freezer? Then you can come by and shop whenever you want.”

I was totally amazed at his helpful offer. What a thoughtful young baker! He went on to tell me that his mother had worked with autistic kids, and he knew what challenges it could pose.

This kindhearted baker baked Christmas bread for Lucas for a whole year, and after that Lucas started eating several other kinds of the baker’s lovely bread.

Once in a while, you meet people with a big heart who go out of their way to help others. This young man touched our lives, and I hope, by this story, he touches yours as well.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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.

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