Posts Tagged ‘autism’

Acceptance and tolerance and forgiveness, those are life-altering lessons.  (Jessica Lange)

Today’s blog is the longest I have ever posted. Yet only this introductory paragraph comes from me. Kelsey Timmerman wrote the rest of it; I copied it verbatim with his permission. If you come from a different political platform, please hold on until the end. The purpose is not primarily political. It is human. Step into someone else’s shoes—at least for a few minutes. Peace, upon all:

…”I hated them because they voted for a man who I despised because of his hate speech. I hated hate so I hated and hated myself for hating.”

I wrote this piece on my blog after the election. Sharing again here on inauguration day:


There are a lot of reasons I didn’t want Donald J. Trump to be our next president, but there is one reason (and probably only one) that I’m glad he won.

The night of the election, I went to a watch party hosted at The Downtown Farm Stand. Gary Younge from the Guardian was there too. (Can you get more liberal than drinking organic beer and eating organic free-range, potato chips with your GMO-free friends, including a reporter from The Guardian? Probably not.) Like everyone else we expected to watch the election of the first female president. I can’t say I was a vigorous supporter of Hillary Clinton (there’s something rather unappealing about political dynasties), but earlier that day when I cast a vote for her I did get the “feels.” I have a daughter and if her fascination with burping and farting ever goes away, I’d like to think she could have any job, including President of the United States.

At the party, I thought, “If Trump did happen to win by some miracle, I’ll be more inspired than ever to get busy on my personal work and my work with The Facing Project connecting people through stories to strengthen community.”

At 9:30 PM it was obvious that Clinton was in trouble. The myth of the “silent Trump” voter was a reality. I stayed up until 3AM. I watched President-elect Trump’s victory speech. I felt like someone had died.

I had solid reasons to feel this way:

Since I’m a freelance troublemaker, we get our insurance through the ACA healthcare exchange. I have an autistic son who receives more than $100K of therapy each year. If/when President Trump repeals Obamacare, will a private insurance company outside the exchange insure us with Griffin’s “preexisting condition?” Or will we have to end therapy altogether?

Then there is Trump…

Did I mention I have a son with disabilities?

There’s the rhetoric of hate, fear, and misogyny. But I don’t want to write about all the reasons President Trump scares the shit out of me and makes me disappointed for our country, and how I feel for anyone that’s been labeled an outsider or other by the creepy nationalistic vibe that he represents. I want to write about how his being elected has inspired me more than ever to build empathy through stories.

On Wednesday I mourned. I skipped my morning workout and zombie-like drove Griffin to preschool. As I moved through the day, I’d see people and speculate that they voted for Trump on the smallest detail–what they wore, what they drove, facial hair. I was prejudging everyone and once I determined that they were a Trump voter, I hated them. I hated them because they voted for a man who I despised because of his hate speech. I hated hate so I hated and hated myself for hating.

On Thursday I was giving a talk at Northern Kentucky University. First year students at NKU read Where Am I Eating? as a common read. I had decided to make the talk entirely about the election and not mention our election once.

I told the story of a family who lived in the Mathare Valley slum in Nairobi Kenya. After a disputed election in 2008, violence spilled out across Kenya. The losing party was protesting the results of the election in which a candidate of the Luo tribe lost to a candidate from the Kikuyu tribe. Luo protestors went door-to-door in Mathare Valley and asked questions in their native tongue. If their questions couldn’t be answered, they killed all those inside. Shaddy Hopkid Marsha, the middle brother of the family, spoke both languages. He gathered up his neighbors and hid them inside his shanty. He answered the questions. He saved the lives of his neighbors.

“How many houses, dorm rooms, apartments, do you have to go from your home until you don’t know the names of the people who live there?” I asked the students and myself.

I shared a story about standing outside of a mosque in Bangladesh while men in prayer robes poured out. This was 2007, and, as much as I liked to think that the constant barrage of “fear the Muslims” in our media and society hadn’t sunk in, it had. My heart beat faster. I was nervous that if they knew I were an American, they wouldn’t like me. I was afraid. But then I spent then next month hanging out with people…people who were Muslim. They were amazing.

“How can we fear people who we’ve never met?” I asked the students and myself.

I shared Amilcar Lozano‘s story. Amilcar left his job as a garment worker in Honduras and risked his life to come to the United States where he works today supporting his family in a way he couldn’t if he were actually with them. No matter where you are on the immigration debate, you can appreciate the sacrifice Amilcar made for his family and the courage it took to make his journey.

“When we start with stories instead of politics and ideology, we can have a conversation with anyone regardless of what political team they are on or who they voted for,” I told the students and myself.

I talked about knowing our neighbors, listening to them, not fearing people we don’t know, and about the responsibility we all have to use our own privilege and opportunity to help others.

It felt so damn good not to hate. It felt good to take positive action to make a difference instead of complaining about things I couldn’t control.

On Saturday, the Facing Racism Project in Muncie project shared 38 stories of people in our community who had a racism story to be told. The event sold out in a matter of days. I’m the co-founder of The Facing Project, a nationwide nonprofit storytelling initiative that seeks to build empathy, and I was also a writer and a part of the planning committee for the project.

The stories reminded us all how far we’ve come as a society, yet how very far we have to go. To collect the stories, volunteer writers sat with volunteer storytellers to listen and collaborate on each story, and actors brought the stories to life. Well over 100 people were involved in the project.

The participants and the audience reminded me that there are people who are willing to sit and listen to difficult subjects. There are people who are willing to connect with people who are different than them.

After the election, we didn’t wake up in a different country. This is our country. If you were surprised by the results like I was, we obviously weren’t listening to other people enough. We let our politics and our politicians divide us. We need to connect and seek to understand those who have different opinions than us.

Universities, bless their souls, are providing safe places for students to mourn the election results. I’ll give you Wednesday. Wednesday I needed a safe place to just not do Wednesday, so I stayed home as much as possible. But Thursday? We don’t need quiet places to be alone, we need to be meeting people, getting engaged with all parts of our community and not just people who look, think, and act like us.

I will make this important caveat though: I understand why certain people are afraid of a Trump presidency. They are afraid of being deported, having a loved one being deported, being rounded up into an internment camp, of being unmarried to a loved one, of not being able to afford health insurance. Those of us who are less impacted by the possibilities listed above need to be there for the groups of people who feel like they may lose rights or be discriminated against. We need to listen to them and stand with them.

We also need to listen to the people who voted for Trump. I have loved ones who I believe are some of the best damn people on the planet and they voted for Trump. I side with Jon Stewart on this.

Here’s what he had to say to Charlie Rose recently:

“I thought Donald Trump disqualified himself at numerous points. But there is now this idea that anyone who voted for him has to be defined by the worst of his rhetoric. Like, there are guys in my neighborhood that I love, that I respect, that I think have incredible qualities who are not afraid of Mexicans, and not afraid of Muslims, and not afraid of blacks. They’re afraid of their insurance premiums. In the liberal community, you hate this idea of creating people as a monolith. Don’t look at Muslims as a monolith. They are the individuals and it would be ignorance. But everybody who voted for Trump is a monolith, is a racist. That hypocrisy is also real in our country.”

We fear what we don’t know. When we don’t know our neighbors, we fear them.

We all need to listen to each other and have empathy for one another. This election has reminded me of that and that the work that I do and the work of The Facing Project is more important than ever. I hope you have similar work to pour yourself into that isn’t just a Facebook post, or a Change.org petition, or protesting. Those things are fine, but if you really want to make an impact, you need to go beyond being against things and work on the things you are for. You need to become part of the community out your actual front door.

If you aren’t sure what to do and want to build empathy story by story, The Facing Project needs volunteer coaches and editors. We also need resources–you can donate here to the Building Empathy Story by Story campaign – http://give.classy.org/empathy .

Since the election, I’ve completed the first draft of a book proposal and shipped it off to JL Stermer–another global quest–and feel absolutely reinvigorated and as passionate as ever toward my work with The Facing Project.

And for that I’m thankful. It’s not a new world. It’s the same world and this election has been a reminder we still have a lot of work to do.

photos taken from Facing Project web page, highlighted with Word tools

A team studies possible approaches in the top photo. Autistic children celebrate who they are in the lower pic.



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“What makes the desert beautiful,” said the little prince, “is that somewhere it hides a well…” Antoine de Saint-Exupéry

As I study Philip R. Rogers’ powerful rendering of my main character in “The Curse Under the Freckles” I recall the bottomless well when the story began, and the empty buckets that came to the surface. “The Curse Under the Freckles” can also be found at Joseph Beth online.

When Chapter One appeared in my first draft the tale had a different title as well as an older audience. I wanted to take a third-grader’s vocabulary and write a book for seventh graders. Although my granddaughter with Down syndrome was already showing an interest in every word in her story books, she opened my eyes to the larger world of kids with special needs.

Older children with limited reading abilities do not want to pick up a story about bunnies and kitties. Yet, the adventures prepared for teens and preteens contain too many words, too many syllables.

As I put together scenes, however, I felt as if I were trying to build a believable fantasy with stale super-sweet mini-marshmallow bricks. The plot reflected it, as predictable as an alphabetical listing and twice as boring. No subplots, insufficient conflict.

Bottom line—I wasn’t ready to serve. Many people believe that writing for children is easy. It isn’t. The editor and publisher’s expectations are higher for the author of children’s material.

Stories need to be fresh and entertaining yet stay within the realms of a young person’s understanding as well as the limits of respectability.

I don’t remember when I knew that giving up on my original goal was no longer an option. But I do know that is when the story took off—with plenty of hurdles of course.

Chase Powers, my hero, lost a few years. He became eleven instead of fourteen. He developed a sense of humor. His foes grew mightier. Some of my critique partners began comments with, “I don’t get this at all. But then I don’t even like fantasy…”

Oh well! Oh, very deep, what-the-heck-is-down-that-imagination-of-yours well?

One of my magical characters says, “It takes no courage to climb a steep mountain when you have been lifted to the top.” Sometimes this writer needs to listen to her own creations.

In the future I hope to help kids who have difficulty reading by writing in a style that is super-easy to read. This book travels through a 560-660 Lexile measure, fifth to sixth-grade reading level.

Perhaps, if I work hard enough I can tell a story with small words that touch and capture the wise. I know it can be done. My grandchildren have shown me that route. Often.

I’m not there yet. In the meantime I plan to have a signing at our local YMCA, and give a portion of my earnings to their autism program. These young persons have a lot to give; the program helps them to find those gifts. I have no idea how much water I can bring to the desert. But those extra drops aren’t noticed in the ocean.

One drop, one word, one action at a time…

back cover the curse under the freckles

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When you are grateful—when you can see what you have—you unlock blessings to flow in your life. (Suze Orman)

As I wait for the green light at an intersection in my neighborhood, I suspect the driver of the old black truck coming from the other direction is in a hurry although I can’t cite any evidence to prove this is true. My heart and mind are not focused on racing. The transience of existence slows my thoughts. I’m on my way to a funeral.

Let the driver make the first move, I tell myself. And see if I am simply being hyper-vigilant. The truck turns with jet-action speed a split section after the light changes.

We would have collided.

I thank God, then recall my best friend Linda’s intuition last night. We were at an outdoor concert. The air got thick and hot. I felt tightness in my chest and started coughing. “I think we’d better go,” she said. “The air is getting just too heavy.”

Lightning flashed in the distance. No thunder. However, we had scarcely hit the highway when the rain came down with such fury I could have sworn we were traveling underwater. Our friend Tom kept his cool as he drove. And I was grateful to arrive home safely.

Now I say goodbye to a friend’s granddaughter. She lived a good life. She was loved. She had autism; it did not own her. I never met the girl and yet her picture in the obituary notice draws me to her. I know her grandmother. And I understand grief. People who have special-needs folk in their lives appreciate the beauty of the bond possible with them.

I think about the wound on my Ella’s chest and wonder how long it is going to take to heal. And yet it will heal. Eventually. It only seems like an eternity.

We can’t celebrate everyone we love forever. I wish I had understood the power of each moment years ago. Actually, I wish I could carry that knowledge into the times that seem boring, difficult, or annoying. Now. As they are occurring and not later.

Intuitions are gifts. The scene at the light saved me from a serious accident. My friend’s insight saved four long-time friends from a mob in a thunderstorm. Neither incident spared me from the real world or a finite existence. Chances are tomorrow will offer opportunities to laugh, cry, get angry, enthused, embarrassed, frightened, anxious, or inspired.

I pray to cling to the gifts.

a smile from God

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To find someone who will love you for no reason, and to shower that person with reasons, that is the ultimate happiness. (Robert Brault)

Several years ago Jay and I were at the Y kiddie pool with Ella when the children from the special-needs class had their outdoor time.

“Ella looks like she could be Payton’s little sister,” one of the teachers commented.

The resemblance was amazing: blonde, blue-eyed girls, both with loveable auras. I found myself watching Ella’s look-alike and telling her she was incredible, but not to drink the pool water. A grandmother’s kind of response.

Recently I met the beautiful lady who calls herself Payton’s sister. She isn’t. Sisters aren’t always this close. Bethany has babysat for Payton since she was considered legally old enough to be a responsible child. Their meeting was a coincidence, or as one of my friends calls it, a God-incidence.

Bethany’s mother delivered frozen food to people who had difficulty picking it up. She knew Payton’s family because she had worked as an assistant at her school, but had been laid off during a financial cutback. Bethany had just happened to be tagging along when her mother made the delivery.  Bethany’s mother treated each child in the school as a valuable individual. Therefore, Bethany learned respect for all persons naturally.  Three-year-old Payton could easily reach her with the beauty of her spirit. A relationship developed.

Bethany could love Payton for no reason and shower her with reasons.

Payton does not speak. When she was six years old she was tested for autism. She has both autism and Down syndrome. These limitations do not stop her from being a good friend and an A-plus example of unconditional love.

Bethany has chosen to act as Payton’s legal guardian. Will this be difficult at times? Maybe, maybe not. No worthwhile choice is without risk.

Recently I spoke to someone who doesn’t know Ella. I told her about our granddaughter’s open heart surgery. The woman nodded, with me until I mentioned Down syndrome. Then came the stepped-back oh-I’m-sorry look. Neither Ella nor Payton are their tripled chromosome any more than my essence is summed up in my height, weight, or allergic status.

Meet Bethany and Payton. And find blessings.

collage made by Bethany in honor of National Down Syndrome Day

Bethany and Payton collage

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I am different, not less. (Temple Grandin)

 If I could I would shout Temple Grandin’s statement across the Internet, national news forecasts, and local gossip networks: “I am different, not less.” Autism did not prevent Grandin from earning a doctorate degree. Actually, when I grow up I hope to be just like my youngest granddaughter, Ella. She has Down syndrome.

Some people turn away when they see someone with a disability like Down syndrome, as if the tripled twenty-first chromosome were contagious, or as if communication with an individual with a rounded face and slightly slanted eyes were similar to interaction with an alien from another planet. Organizations such as the National Down Syndrome Society have helped alter that notion. Efforts to change attitudes toward folk with other disabilities continue. The Autism Society explains how a person with autism perceives reality.

I have to admit that I have learned more from Ella than she has learned from me!

Our little girl has charisma. Her mission begins with a smile that reaches into the heart, an acceptance that doesn’t judge. When Daddy and Cousin Kate stopped by the daycare center to take Ella on a trip to visit her great-grandmother, the other children formed a circle around her, keeping Ella captive. They were unwilling to relinquish their princess. Daddy needed to trick the children into a race so that he could grab his daughter and run.

Ella does not present herself as better—or less—than anyone else. True, her life has barely begun; she needs to double her age to reach double-digits, but I have never seen any signs of ego, impatience, or striking-out-in-uncontrolled-anger. Oh, she knows the word no and uses it often, but not as a weapon. She seeks independence the way any other child does.

Our granddaughter has had three surgeries, two that were serious; she is terrified of medical settings. However, after each visit she recovers into her smiling self with remarkable speed. She lives in each moment; now is the only time that offers usable power.

I study a photo of the toddler son of a friend. He, too, has Down syndrome. He has had multiple surgeries. Nevertheless, he grins at the camera as he waits for his breakfast. I think about how few adults would respond with such enthusiasm. Not only would they be repeating poor me as if it were a refrain in a popular song, they would be wondering why they had to wait to be served, considering all they need to endure. Most folk with a tripled chromosome don’t see themselves with the sun rotating around their needs.

I catch myself fussing with a bouncing cursor that reminds me of a drunk fly circling spilled honey; my irritation almost reaches uncontrolled cursing of another kind. This should not happen!

Yeah, well, I’ll figure it out, eventually. In the meantime, today is a day to celebrate, September 8, 2014. Ella is five-years-old. (Posting won’t happen today, however. I need a day or so to let the words settle before I edit them. I cannot claim perfection on any level. I don’t even feel free to be totally me no matter where I am; Ella is still giving me lessons in that area.)

I am sharing a photo of her birthday cake, not because it is beautiful, but because it is delicious inside and a tad ordinary on the outside. I have never taken a decorating class and probably won’t—I have a tendency to eat too much of the art form. The layer-fit alone disqualifies my creation from any cooking magazine, but I bake from scratch and the frosting contains fresh strawberry.

Happy Birthday, Ella! May we celebrate the differences that make any ordinary individual spectacular.

Ella's birthday cake, five years old

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There is no such thing in anyone’s life as an unimportant day. (Alexander Woollcott) 

Ordinarily quiet and I get along like cake served with ice cream. However, I’d rather be at my aerobics class. Unfortunately, my breathing sounds as if my lungs were tossing pebbles at one another. After a while those pebble turn into stones and they sting. This isn’t the best time for lively exercise. Left kick, right kick, mamba, turn, and wheeze. Besides, my cough could scare off a class of battle-trained marines.

Since the monster wheeze responds only to steroid treatment I am now faced with the steroid monster’s side effects. I have the attention span of a two-year-old who has devoured half a bag of candy, and I probably won’t sleep much for the next twelve days. However, breathing is not generally considered an extra.

Okay, Ter, focus. How can I do that when one-thing-at-a-time feels as possible as collecting a foot of snow in a thimble?

First, drain that coffee and switch to herbal tea for heaven’s sake! Then try one task that requires physical effort—but not too much since my mind may think I’m marathon-ready. My body will balk.

Ah yes, one small section of an untidy cabinet. Face it, girl. Only one portion of cabinet. Slowly. Yeah, I know buzzed-on-prednisone brain, you also want to write an entire synopsis, make your Christmas presents, scrub the floors, finish this blog, annihilate every cob web in the house, and do laundry…all before your husband comes home from that beloved exercise class and the grocery store. Oh, and you will check your e-mail 47 times in between.

Right. Maybe that’s not the most efficient plan.

After that one reorganized section looks decent, I notice there’s a spill in the microwave. My actions snowball, with only one, okay two stops to check e-mail. As I struggle to keep my thoughts under control and lungs working properly, I think about the difficulties other people face. My husband is reading, “The Reason I Jump,” by Naoki Higashida. When Jay is finished he has promised to let me read it. When he comes home from class and the store he tells me he is ready to share the book.

I turn to David Mitchell’s Introduction and I’m lost in words, in pages, in this world opened by a boy born in Japan in 1992. This story explains the autistic world. It isn’t what an observer sees; it is as different as the interior and exterior of a locked cabinet, a wrapped gift, or a capped unlabeled bottle. Seeing the actions of an autistic person doesn’t tell what happens inside.

Day dissolves into dusk and I continue to read, needing to pause once for a drink of water and once for an inhaler break. Naoki answers questions that appear almost rude, with style and grace. He is thirteen. He cannot speak. He uses an alphabet board. Not all autistic people are alike any more than all people are alike.

One experience Naoki relates concerns listening to others instead of looking at them. Eye contact is too overwhelming. He sees with his ears and that is sufficient stimulation. Thanks to Naoki for helping me to focus, using my heart, paying attention to someone else instead of my own petty miseries.

Here is the Amazon link to his incredible and beautiful story: http://www.amazon.com/Reason-Jump-voice-silence-autism-ebook/dp/B00BVJG3CS/ref=sr_1_1?ie=UTF8&qid=1384473869&sr=8-1&keywords=the+reason+i+

walking in someone else's shoes

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