When a Person I'd Never Heard of Gave My Son an Award

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10933758_10153028358283841_6093409176430350505_n Sometimes, when I hear people speaking disparagingly about the disabled, I want to show them a picture of my son, Pete, and say, “This is what autism looks like.”  Because there’s nothing piteous or sad about my Pete. He’s about the best person I know, and I feel lucky to be his mom.

In some ways, Pete’s just like other teenagers. He likes hip hop music and sequestering himself in his bedroom. He likes to dress a certain way and likes hanging out with his friends. In some other ways, Pete is wonderfully unique. One of the most amazing things about Pete is the way he cares about other people. Pete likes to compile information about a person when he meets them and likes them. He’ll remember their birthday, their parents’ and siblings’ names, what kind of music they like. Pete will remember this forever. When we walk across the campus of his middle school together, kids always shout out, “Pete, when’s my birthday?” to which he will gleefully reply with the correct date.

Pete’s had to work hard with his speech therapist on friendship, though, because he’s struggled. He had to be taught how to keep a conversation going and how to ask questions and not dominate the conversation. He had to learn to bring up topics that a friend might be interested in and not just talk about presidents or hip hop. Pete made such great progress in this area that his speech therapist awarded him “Student of the Quarter” when he was a seventh-grader. Pete was proud and so was I.

I was astonished when he came home with another Student of the Quarter Award this year. This is what it said:

Pete has exhibited good citizenship and school work habits.  He is always in a good mood and respectful to students and staff.

It was signed by a person named Frank. I asked Pete who Frank was, because he’s not Pete’s special education teacher, mainstream teacher, adaptive PE teacher or speech therapist. Pete told me that Frank is the school’s janitor. He then proceeded to tell me Frank’s birthday, parents’ names, number of siblings (and all their birthdays) and details about Frank’s children.

Pete didn’t see why being nominated by Frank moved me so much. And that’s because Pete does not judge anyone. Pete values every human the same way, as long as the person is kind to him. Pete doesn’t know that most eighth-graders don’t want to hang around chatting with the janitor.

Being Pete’s mom has opened me up and pushed me out of my comfort zone over and over. He’s taught me things I don’t think I ever would have learned without him. I think so far, the most important lessons I’ve learned from Pete are how to be more accepting and how to see the best in people.

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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Yes, I’m Nonverbal. But That Doesn’t Mean I’m Unintelligent.

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Screen Shot 2015-01-30 at 9.26.24 AM All people communicate, but not everyone talks.

Some people talk a little but not conversationally. Some people say words and phrases out loud that don’t match what they really want to say.

Sometimes I use talking words, but I’m still very much nonverbal. Saying words out loud is not always possible or accurate for me. My pronunciation of words isn’t totally clear, and I say words in a different order than most people would. I can more fully express myself using a letter board or Proloquo2Go.

Many times I say nonsensical things like, “Larry boy!” or “Go back to green house!” and I repeat it many times for no reason. I hear myself and think, Boy, I sound ridiculous; and I wish I could stop, but I have no control.

When people ask me things, I know exactly what I want to say, but there is an ever-present blockade between my brain and my mouth. It is extremely frustrating, as you can imagine.

Especially damning are the assumptions that my intelligence is low because of my thwarted attempts to respond the way others expect — with verbal words. I can remember a time when a person said to Mom that I have a very low IQ of 40, and I wanted to scream, “No!” But I couldn’t. It was horrible not to be able to defend myself.

I sincerely, altruistically, hope and pray that more autism pros like teachers and doctors will realize that autism causes major issues with getting the body to cooperate with the brain to respond. But ability to comprehend is unaffected. This will make way for more appropriate help for people with autism.

This post originally appeared on Red Roses for Autism.

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Dear Disneyland Staff Member Who Saw Past My Meltdown

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My mom and I walked into guest services; I was visibly upset after a misunderstanding with a cast member. I sat there crying, in meltdown mode, as my mom began to explain the situation. You and your staff understood. You welcomed us to stay there as long as I needed to, which was a kind gesture.

But what happened next was the most magical of all.

After asking my mom, you came over to me, and I agreed to listen to your idea. You began to tell me how busy princess Rapunzel was. (She’s one of my favorites and was one of the two princesses I hadn’t met yet.) It was near the end of the evening’s Halloween party. I was overstimulated but determined to persevere and enjoy it after all we’d been through to get tickets to the sold-out event.

Rapunzel was busy, but I wanted to see her. I didn’t know what you had planned. You asked me if I’d like Rapunzel to write me a letter — you’d call her and ask her to do it, you said, and I could pick it up at the end of the evening. I agreed. Off mom and I went, and later, on our way out, we walked into guest services, and sure enough, an envelope with a signed picture of Rapunzel and Flynn Rider was in it. I was ecstatic! I’m sure you probably pulled it out of a file and signed it yourself, but for the purpose of this, I’m choosing to focus on the magic… because it’s Disney, after all.

If you ever read this, thank you, from the bottom of my heart

Thank you for not making assumptions about me.

Thank you for not assuming I was acting like a brat.

Thank you for not judging me or making me feel bad.

I don’t remember your name, but thank you.

Thank you for looking past my meltdown and seeing a young lady who was truly overloaded and frustrated and who believed in every ounce of magic Disney had to offer.

chloe

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 Woman in the 99 Cents Store Who Witnessed My 33-Year-Old Brother's Outburst

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My brother, Dar, is a handsome and huge 33-year-old man with autism.

A couple of years ago, he and I were in the 99 Cent Store shopping for groceries and happily hurrying so we could go pick my boys up from school. Suddenly, my brother made a dash toward the dairy section.

Standing next to the milk and butter he clapped his hands loudly, jumped up and down and screamed for joy. I giggled and asked him to please celebrate a little bit quieter.

Then I noticed the old woman standing just behind me. She had her hand on her heart and her face was pale and ashen looking. “Are you OK?” I asked her, feeling concerned.

“Yes,” she answered with a crooked half-smile, “your friend almost gave me a heart attack.” I apologized for my brother’s surprising behavior while my brother smiled at her and showed her the butter in his hand. She was already looking healthier as she smiled at Dar. “It’s fine. But I really did almost have a heart attack. I’ve just gotten out of the hospital for heart problems!” She gave a little giggle and continued with her shopping, as we continued with ours.

That is a very strong memory of mine. The woman had been kind — and she could have died! Yet she seemed to believe that neither her quality of life nor my brother’s, was more important than the other. We should all do our best to be considerate of the world around us. All of us. It’s not just up to the world to be considerate of my brother, and it’s not only up to my brother to be considerate of the world. My brother is learning, and he is challenging others to do the same.

Thank-you so much to the lady at the 99 Cent Store.

We remember you often, and I’m so glad you did not have a heart attack that day.

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This post originally appeared on Autism Answers with Tsara Shelton.

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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How We Helped Our Son With Autism Attend a Birthday Party

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Typically it’s not a hard sell to get a 7-year-old to go to a birthday party with their friends. Unfortunately that’s not always the case when said 7-year-old is on the autism spectrum.

This is further exasperated when the aforementioned party is a play and may involve costumes (or, as my son would put it, “mascots”). For years we’ve had to be creative with sporting events, amusement parks and other venues where some person dressed as a cartoon character may invade my oldest son’s personal space and send him into anxiety and terror.

Some may look at this as a problem.

What we’ve come to realize, however, is that after countless bouts of arguments, tantrums and fits of rage there can be a way. It just takes a little coercing.

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First off: What works for us is when we don’t let him pull the “leave me home with Mommy/Daddy/Grandma” card. He has to know this is an obligation. We explain that we’ve already made a commitment to be there and that it would be socially irresponsible to cancel at the last minute. This gives us an opportunity to teach him a little about social norms as well. We don’t overload him, though. We explain that he can stay in the lobby or towards that back and that he doesn’t have to be where the action is. This at least gets us in the door and eases the transition.

Once inside, we ease him into the activities. By showing up early, we can take a look around and see that it isn’t so scary. We talk to the staff and see if we can get a feel for the environment. We maybe take a staff member aside and explain our child’s developmental needs so they’ll be more attentive.

Finally, once he’s comfortable with his surroundings, we step aside and let him get in his element. That’s when we expect to see some fantastic achievements. Getting him out of his comfort zone will lead to his ability to engage with others and develop his skills and talents beyond his or our expectations.

This post originally appeared on resurgencewebdesign.

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10 Insightful Memoirs About What It’s Like to Have Autism

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If you or a loved one has autism, you know that sometimes the only people who understand what you’re going through are others going through similar experiences.

Here are 10 memoirs about autism written by people who have been there. The list includes some titles our readers recommended, along with a few of our own selections.

Born on a Blue Day Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant by Daniel Tammet

Tammet has savant syndrome, an extremely rare condition in which people with autism also have mind-blowing intellectual capabilities. Rather than interpreting numbers as simple values, the way the average mind does, Tammet sees them as colors, shapes and textures. This helps him achieve amazing feats, such as calculating the day of the week on which someone was born based on the birth year and memorizing more than 20,000 digits of Pi. Tammet takes readers on a fascinating journey of his own mind in this moving account of all the colors and textures that comprise his world.

The Reason I Jump The Reason I Jump: The Inner Voice of a 13-Year-Old Boy With Autism by Naoki Higashida

Higashida was nonverbal and just 13 years old when he wrote this series of explanations about living with autism, using a Japanese alphabet grid to compose his words. The Reason I Jump is comprised of short essays, each of which begins with a common question he faces about autism, like “Why do people with autism talk so loudly and weirdly?” or “Why do you ask the same questions over and over?”

Look Me in the Eye Look Me in the Eye: My Life With Asperger’s by John Elder Robison

Growing up in the 1960s, before a name for his diagnosis existed, Robison always struggled to fit in and never understood why. In Look Me in the Eye, Robison chronicles how he acclimated to a world he didn’t understand, from surviving an abusive childhood to dropping out of school to working on Pink Floyd’s sound team to eventually starting his own business — all before he was finally diagnosed with autism in 1996.

Thinking in Pictures Thinking in Pictures: My Life With Autism by Temple Grandin

One of the best-known writers and speakers with autism, Grandin, an animal scientist, explains how her autism enables her perspective as a scientist and how she’s learned to utilize that perspective to revolutionize the way livestock is treated in the U.S.

 

 

The Journal of Best Practices The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband by David Finch

Five years into a marriage accentuated with quirks and peculiar routines, Finch was diagnosed with autism. Though he and his wife finally have an explanation for his behavior, it doesn’t make life too much easier. Finch realizes that if his marriage is going to be successful, he needs to be a better husband. In In The Journal of Best Practices, he describes with humor and love how he improved his marriage, one hard-earned realization at a time.

Following Ezra Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love From His Extraordinary Son by Tom Fields-Meyer

After a therapist suggests Fields-Meyer grieve for the child his son, Ezra, “didn’t turn out to be,” the dad sets out to do the opposite: love his child for exactly who he is. This sweet memoir depicts his bond with his son through the first 10 years of Ezra’s life, giving readers glimpses into the tender moments as well as the struggles that accompany raising a child with autism.

How to Be a Sister How to Be a Sister: A Love Story With a Twist of Autism by Eileen Garvin

Garvin’s’s older sister, Margaret, was diagnosed with autism at age 3. This compelling book portrays with humor and intimacy what it was like to grow up with an older sibling on the spectrum and reflects on how Garvin’s childhood experiences with Margaret continue to affect their relationship as adults.

 

 

Life, Animated Life, Animated: A Story of Sidekicks, Heroes, and Autism by Ron Suskind

Just before Suskind’s son, Owen, turned 3, he suddenly became mute, stopped understanding speech and could no longer eat or sleep with ease. Diagnosed with a regressive form of autism, Owen’s only source of comfort was the Disney movies he loved. Life, Animated is his father’s gripping account of his family’s story as they learn to reach Owen the only way they can: through Disney dialogue.

The Ride Together The Ride Together: A Brother and Sister’s Memoir of Autism in the Family by Paul and Judy Karasik

In this unique dual-perspective memoir, Judy Karasik narrates while Paul Karasik uses comics to express what it was like to grow up with their older brother, David, who has autism. Their story follows David from childhood through middle age, divulging a family’s strange inner world that the Karasiks always considered perfectly normal.

I Am Intelligent I Am Intelligent: From Heartbreak to Healing–A Mother and Daughter’s Journey Through Autism by Peyton and Dianne Goddard

In 1980, Peyton Goddard, 6, was diagnosed with severe autism and deemed “worthless” by everyone but her parents. But at age 22, Peyton, who still lacked the ability to communicate or control her body movements, surprised everyone by typing “I am intlgent” on a keypad, revealing a gifted mind that had remained stifled her entire life. I Am Intelligent is a first-hand account of how low expectations and labels can harm children with special needs and urges the importance of treating them as respected members of society.

What would you add to this list? Let us know in the comments below. 

Check out our previous round up of books about disease and disability.

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