This Is the Perception People Have of My Son. And This Is the Truth.

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Some people say that perception is reality. I don’t know. It’s just too black and white for me.  Maybe if we add one word, I can get on board with it.

Perception is sometimes reality.

There. The first quote seems to imply that perception is ALWAYS reality. I think the best way for me to explain my thinking on this is to share a few stories about my son, Matthew.

Perception: He’s in his own world and not listening to what others are saying, especially adults.
Reality: A few weeks ago (maybe over a month now… I can’t believe I could keep this story under wraps that long), we were sitting in church and our pastor was delivering the sermon. Our pastor mentioned the word Mt. Calvary. Matthew looked up at me and put his arms out and moved his body to signify “flying.” I know what you’re thinking… there were no airplanes at Mt. Calvary, but follow me a little bit longer. It took me a minute to make the connection, but when I put it together I was floored.

We recently figured out that when he made that flying gesture, it meant that he wanted to hear The Army Song (a song that we sing in Children’s Choir). That took some detective work to figure out, believe me. But when we sing the song, we put out our arms like we are flying for the line that says, “I may never fly over the enemy.” I quickly went through the words in the song in my head until I hit, “I may never march in the infantry, ride in the calvary…”  So even though the word calvary was used two different ways…he heard it…he was listening! The potential for what this could mean for him is HUGE!

Perception: He’s not aware of what’s going on around him.
Reality: One day at school he was heading up to the carpet and he passed a classmate who was having trouble finding her book. He paused, pulled her book out far enough for her to see and kept on walking up to the carpet to join his peers.

Perception: He probably has trouble with long-term memory.
Reality: If he has been to your house, he will remember exactly where you keep your vacuum. When we are driving and are one the same road as his doctor’s or dentist’s office, he will do his invented sign for those places. When we go to my sister’s cabin (which we only visit one to two times a year), he will remember specific places that objects are kept. And he will know if they are missing! We found that out the hard way last summer when he kept signing “wagon” because he remembered that they had had a riding toy that you can push.

Perception: He can’t problem-solve.
Reality: At school they started using a “standing desk” (a desk that is tall enough to stand at). They took pictures on his iPad and commented that he loves it. That week at dinner, he pushed away his chair and pulled up his stool and made a “standing table.”

Now I don’t condone this next behavior, but it does show his problem-solving abilities. He made garbage by unrolling toilet paper and throwing it away because he loves to empty wastebaskets (one time he threw away multiple pairs of underwear to make garbage.) When we are at restaurants or new places, he will sign “bathroom.” He often barely has to go, but he knows I will not say “no” to the bathroom sign and it gives him a chance to explore and see more.

Your perceptions will be based on what you initially see: Matthew’s noises, his jumping, his flapping, his smelling, his silly giggling, etc. Your perceptions will also be based on your experiences with other people with autism or other disabilities. If you’re in the education or medical field, your perceptions might even be influenced by a clinical definition of autism and its characteristics. And some of your perceptions might be true… SOME of the time.

At least that’s my perception. And you know what they say about perception…

perception versus reality

This post originally appeared on Autismic.

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‘Thank You’ Doesn’t Seem Like Enough, So I’ll Say This Instead

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When we began our autism journey five years ago, I had no idea the dramatic impact my son’s teachers and therapists would have on our lives. All I knew back then was that I was desperate for the meltdowns to stop and to somehow find a way to reach my precious boy. When he was 2 years old and newly diagnosed, he spent most of his day in aggressive tantrums and screaming. I had no idea how to calm him or communicate with him. In the middle of the night, with tears streaming down my face, I would wonder to myself “Does he even know I love him?” I felt like a complete failure as a mother.

Autism has often been described as a “child living in his own isolated world.” And finding ways to break thorough into his world would prove to be challenging, to say the least.

Since my son’s diagnosis, I’ve been introduced to the most amazing people. Teachers and therapists who have poured their hearts and souls into my precious boy. They are the most compassionate, patient, innovative and downright brilliant people who, had it not been for autism, I most likely would have never met. They refuse to give up on my son. They tirelessly keep going and always manage to do it with a smile on their faces. They celebrate him, not just tolerate him. And that has made all the difference.

This week is teacher appreciation week, and what do you say to the people who have given you more than you could possibly put into words? The phrase “thank you” just seems too small.

Michelangelo wrote: “I saw the angel in the stone and I carved until I set him free.”

So to all the “Michelangelos” who have touched our lives over the past five years, thank you for setting my angel free.

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Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Thanks!

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When 2 Women Whispered About Us in the Park

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The following blog was written by a mother in the perspective of her child. 

I was talked about today. Well, actually, they whispered.

We went to the park to tire out my noisy sister. Mom and I had been on the swings together and she had helped me have fun on the big slide. After we had some fun she put me back in my wheelchair-pram — it was time for her to have some fun with my sister.

My pram was at the edge of the park, and Mom and my noisy sister were on the swings.

Some ladies were there. They were having fun at the park, too. They talked about me, asking each other, “Do you know Dexter?” And then, standing between Mom and I, they started whispering.

We don’t know what they said.

Maybe, they were talking about how much fun I had been having and how well I was doing at holding my head up. Maybe they were talking about my cool bike and the trips to the park I make on it. Maybe they were talking about my efforts at walking.

We know they talked about my preschool because we heard that word.

Maybe, they were talking about how cool I looked, like a Ninja Turtle, or they might have been talking about my cool preschool paintings.

We’re not sure what they were talking about because they started whispering. But we were right there.

They didn’t say hello.

They didn’t smile.

They didn’t even look at Mom.

We get looked at, pointed at and talked about all the time.

Every day.

We’re getting used to it… a little bit. But the whispering? The whispering hurt.

We left the park not much after they started their whispering. And, when we left, Mom had a little tear in her eye.

I was recognized by some other people today. It was earlier in the day. The lady and the man knew me from preschool. They have a child who goes to the same school.

My preschool friend’s mom recognized us. She told her husband I was there.

Mom didn’t know them and I don’t have the words to tell her. But, she recognized the other mom as soon as she smiled. The man turned around and gave Mom a big smile too, then he called me a preschool friend and smiled again.

That made Mom smile.

Thank you for saying, “Hi.”

A hello and a smile is always nicer than a whisper. Whispers hurt.

A version of this post originally appeared on Love Dexter.

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The Promise I Made My Newborn as We Cried Together

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 “I asked the Zebra,
Are you black with white stripes?
Or white with black stripes?
And the zebra asked me,
Are you good with bad habits?
Or are you bad with good habits?
Are you noisy with quiet times?
Or are you quiet with noisy times?
Are you happy with some sad days?
Or are you sad with some happy days?
Are you neat with some sloppy ways?
Or are you sloppy with some neat ways?
And on and on and on and on and on and on he went.
I’ll never ask a zebra about stripes…again.”

                                                               — Shel Silverstein

My daughter Addie was born early. Three weeks early. I started having contractions in the parking lot of an Olive Garden while Frank Sinatra was singing on the radio, “Let’s take it nice and easy…” It was almost Halloween, and that night in the maternity department all that was on TV were old scary movies. Addie was delivered into this world in the morning “sunny side-up,” as they described it to me. It was not a dramatic delivery. The biggest issue initially was correctly the nurse who thought I said Addie’s middle name was “Tracy” not “Faith.” To which she responded “Oh, that’s so much better…” (Sorry to any Tracys out there.)

Addie was a little bit of a baby — tiny all around with little waves at the bottom of her hair. She struggled a bit with her blood sugar being low and then with feeding. She had some problems swallowing and latching on. She cried a lot. We found that the only way she didn’t cry was if she slept in something moving. She was trying to tell us something. We just didn’t know what it was yet. She was hospitalized two times within her first month of life, then again two months later. She had many specialists, many appointments and many hospital stays. After her third set of ear tubes, an adenoidectomy, a GI biopsy and a lung biopsy, it was determined that she had ciliary dyskinesia, a rare lung disorder treated a lot like cystic fibrosis. It means the cilia in her body aren’t all intact and can’t rid the body of things that would cause lung infections or ear infections. We also found out she had colitis. She was allergic to milk and soy (she’s 4 now and now not allergic to either thankfully). But Addie still cried. She had a lot of trouble feeding and eating and was delayed. Mysteries still lurked. 

I remember the phone call well. It was a Thursday morning at work. Her neurologist wanted to review her MRI. I didn’t have time to Google. I grabbed a piece of paper on my desk and started writing everything I possibly could. The paper had these words written sporadically: “Brain Malformation,” “Vascular accident?” “Trauma?” “May never know – result is the same,” “Static but unknown future,” “Mild,” “Unilateral,” “many small folds”, “unique pattern,” “may blossom with continued therapy,” “will know more as she grows,” “high risk of seizures,” “mild CP?” I needed the following: information and what to do specifically. I specifically saw the words “may blossom” and felt those two words were the hope given to us to have faith in the doctors and faith that the future would be bright.  

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I remember being in my bedroom. It was nighttime, and Addie was crying. For some reason, this night, the swing wasn’t calming her. The swing was supposed to be the lifeline. It sat next to my side of the bed. If I heard it start to slow, I knew to get up and change the batteries as soon as humanly possible.

This one night, the swing itself was working fine mechanically, but the swing’s magic was not working. So I did the next best thing, and I held her and paced. We walked back and forth across my room. At one point I started crying with her. I don’t know why. I wasn’t feeling sorry for myself. I know I was overtired. But it was something else. I couldn’t put my finger on it. We just cried together; we cried hard. I let myself cry with her. I don’t even know if she knew I was crying. But we had this long moment together of pacing and crying. I wanted so badly to help her. I wanted so badly to “fix” what was wrong. I didn’t know “what was “wrong” with Addie yet, but looking back I truly believe it was in that moment that I knew something was seriously going on, and I let myself cry. And Addie let me pace, hold her and cry. We let ourselves have that moment together. This was nothing monumental, but it was poignant to me. When she — and I — finally calmed, I held her tight and close to me. She was sweating, her heart was racing and I whispered lovingly into her ear, “It’s OK, Addie. Mommy knows there is something wrong. You don’t have to fight it; I will fight for you from this moment on. I promise. I love you as you are.” And just like that – poof! Like when you make a wish on a coin and throw it into a wishing well, I made this commitment to my daughter in her ear, and I let it go. And I never looked back. 

I later found out the actual diagnosis Addie was given was called “Polymicrogyria” or PMG. This means “many small folds.” I find it fitting; my Addie-bug is indeed full of many small mysterious folds — this is her personality. This makes sense.

Addie is now 4 and Audrey is 6. Addie is doing great. She has a service dog named Data and is in a Pre-K classroom in a public school system. Her dog goes with her to school. She has occupational, physical and speech therapy. She loves her big sister to pieces. She was diagnosed on the autism spectrum along with the other above diagnoses, but she’s excelling. I’m thankful for the day I let it go. I’m thankful for the day I accepted it all and moved with her and loved her for her — for all her unique stripes. To this day she hasn’t stopped moving, and I haven’t stopped moving with her.

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The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. 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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Why a Taxi Ride Taught Me an Important Lesson About Disease and Grief

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It was at the end of a short, intense visit to Memphis in June 2012, midway through my project. I’d been traveling the country, meeting people living with multiple sclerosis, hearing their stories, meeting their families and taking their photograph in candid moments.

That weekend was brutally hot and full of challenges. But one moment in particular served as a powerful lesson and turning point for how I understood illness and disability. The whole reason for my expedition.

All of the little moments from Tennessee, plus ones from Washington, New Mexico, New Hampshire, North Carolina and more, are part of a journey beginning a year after my mother’s death from a difficult 20 years with primary progressive MS. The road is coming to an end, I sense, as I am far different from the bitter, afraid and cloistered person I was during her life. After her death, I wanted to change that; I traveled the United States to see how other people felt about disease.

Read more about my photo project here: Enlightening Photo Series Tells a Deeper Story About Life With Multiple Sclerosis.

I sat in awe of each participant’s story, drank with them, celebrated their achievements and grieved their losses all in order to destabilize how we — strangers, the media, friends, me — understand the word “chronic.” There are no heroes in illness, or Brave Battles or any other “Reader’s Digest” smarm in my travels. There’s just wonderful people and new friends. Artists, scientists, athletes, parents who are not their disease. Their stories, collected in a book of portraits, will be completed this summer, and according to her Go Fund Me page, partial proceeds from the book will go to MS research.

The moment that served as an especially powerful lesson and turning point for me is one I have not shared yet. Perhaps because I, an opinionated atheist, have been reluctant to share its overt spirituality. Maybe because it was so early, so solitary, I imagined it. But I haven’t forgotten it.

It was the taxi ride back to the Memphis airport, a 5:30 a.m. balm. My driver stepped out to get gas, his unbuttoned shirt blowing open in the hot Southern breeze. As he pumped, I listened to the radio, his preferred Sunday morning station murmuring an evangelical program. The preacher’s story lasted only the length of time it took to fill the tank. It was so early, and silent, and it seemed like nobody else was alive but the driver and me. Maybe I was the only one who heard it.

Forgive me for lacking the preacher’s eloquence, but here’s what the radio said:

Two men sat fishing. One caught a huge fish, looked at it, threw it back. Caught another, inspected, threw it back. Then he caught a third, a tiny one, and held onto it. Bewildered, the other fisherman finally asked, “What’s going on? Why keep the little one when you catch these huge, magnificent fish?” The other man replied, “Because my skillet is only 10 inches.”

The congregation went so nuts at this, it echoed in the station’s parking lot from the open window. I jumped — I’d forgotten there were real people there, and he wasn’t just some radio ghost designed just for me. But they roared and clapped with understanding.

The preacher continued over the din. We fear the power of possibilities and the weight of greatness, he said. “We don’t decide it,” he crescendoed, “we serve it.”

I mean. That is a good story.

I don’t believe in God. I do believe in people, that we may fear what makes us great, that we limit ourselves and limit others without their permission. Neither are fair. Disability, illness, chronic, are just words. They are often painful, sad, frustrating, devastating words too; I’ve seen that in my own life and in the lives of those I’ve met.

Through their stories and their friendship, I finally saw we are more than our bodies, our grief. I finally allowed my mother into my heart. Too late? I am trying to make up for lost time. And while I have this body and this mission, I will continue to try.

Serve your greatness. It’s the only choice.

Read more about Nadine Friedman-Roberts’ photo series about multiple sclerosis on NadineFriedman.com.

Clarification: A previous version of this article stated that proceeds from her book are going to the National Multiple Sclerosis Society. According to her Go Fund Me Page, partial proceeds are going to MS research.

The Mighty is asking its readers the following: What’s one secret about your or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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7 Easy Ways to Support Colleagues With Mental Illness

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May is Mental Health Month. This year it’s of special significance to me since I recently lost my brother Spencer, who lived with schizophrenia. It’s been heartbreaking.

Like many people with a mental illness, Spencer was unable to make a living. I know this contributed to his despair. It’s a shame because he was bright-eyed and intelligent and had so much to offer.

Chances are you have a colleague who suffers from a mental illness — probably silently, unbeknownst to others. The U.S. National Institute of Mental Health estimates that one in four adults has a mental health disorder. One in seventeen has a more serious variety like schizophrenia or bipolar disorder.

It may be the founder of the business where you work. It could be the CFO, who experiences bouts of serious depression; the creative director who’s doing her best to manage bipolar disorder; or the computer programmer who’s autistic. Maybe it’s you, and that’s a-OK.

It’s easier than you think to support these colleagues, even if you’re not sure who they are. Here are some simple things you can to do help:

1. Read up on mental illness — increase your awareness.

Check out National Alliance on Mental Illness. Learn about suicide preventionADHDAsperger’s syndrome and different types of depression.  

2. Post something in honor of Mental Health Month, even if it’s small.

It’s amazing how much a simple post or retweet can signal support and respect to your colleagues, especially those who suffer silently. Consider joining a NAMIwalk or adding your name to the Stamp Out Stigma pledge. Then post about it. Follow the #MentalHealthAwarenessMonth hashtag and retweet something. Do something, even if it’s as simple as sharing this article.

3. Improve the way you talk about mental health issues.

This may be the number one, most helpful thing you can do. Think twice before making offhand remarks about “going crazy,” “acting psycho,” being “schizo” or “ADD,” or saying that something is “making me want to shoot myself.” Here’s an excellent article with more communication tips. I’m still working on this, so feel free to offer other suggestions in the comments.

4. Ask!

If you know a colleague who lives with a mental illness, consider asking them how you might better support them or if there are any changes you can make to work better together. You might be surprised by how simple the suggestions are.

5. Improve your health insurance and work policies.

If you’re in a position to influence your health insurance or work policies, reevaluate them with the perspective of wanting to retain talented employees who live with a mental illness. Invest in mental health benefits. Again, small tweaks can make a big difference.

6. Respect different personality types. 

Think of this as emotional and neurological diversity. Just as a good teacher accommodates different styles of learning, create a sense of openness to different personality types and operating systems. By showing respect for different modes of working, you make it safer for people to bring their full talents to bear. You may find that it leads to better results.

7. Read this article in Harvard Business Review. 

It’s a brave, honest account with some practical suggestions.

“There are no simple answers for organizations. But as someone who has suffered, sometimes silently, from a mental illness for more than 30 years, I can speak personally about how it can be managed on the job. I have worked for world-class consulting firms and publishing companies, both in Europe and America. Life in a hard-driving corporation may not have the life-or-death responsibilities that commercial pilots must bear, but it can be just as stressful.”

In sharing these tips, I want to be clear that I’m not advocating being soft on business results or boundaries. Issues around mental illness are complex — in the workplace and in general. The onus is on those with a mental illness to seek treatment.

But it’s on the rest of us — business owners, colleagues, managers — to provide a workplace that’s supportive. It’s not just a moral imperative, it’s smart business. The productivity upside is huge.

For many people, a job isn’t just a means to make a living but core to their dignity. It’s a livelihood in the fullest sense. If some small action makes it easier for them to hold on to that, why not do something?

So take a step. You’ll be helping someone’s brother.

What other simple steps can people take to support colleagues with a mental illness? Add to the comments below. You can follow me @jeffgiesea.

If you or someone you know needs help, please visit the National Suicide Prevention LifelineHead here for a list of crisis centers around the world.

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