I’m Told My Brother’s Needs Make Him ‘Hard to Please.’ It’s Just the Opposite.

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To my brother, the handsome man with autism:

When I first met you, you had brown hair that stuck out in every direction, grey-blue eyes, a squirmy, little body, and a crazy, loud scream.  You screamed a lot; I think you were trying to take in the whole world through your deep, wide-mouthed breaths… But all of the pictures, colors, sounds and people were just too much for one tiny baby.

As you grew older, you grew quiet — still taking the world in through your grey-blue eyes — watching “Sesame Street” with me, rocking back and forth to the music and flapping your wrists in your signature way. You liked to flap all the time… while eating hot dogs, watching movies, singing songs. Flapping was your happy place, but also your nervous one.

To this day, you flap when your t-shirt isn’t grey, when we are late for an appointment or when you don’t get to pick where we eat lunch. You are a genius, my brother, because you can communicate more with the flick of a wrist than Ernest Hemingway could in 50 pages of prose.

But that’s just my opinion…

And being a literalist, we both know you operate only on facts.

The fact is, you’re my brother, and sometimes you frustrate me. You’re a creature of habit. You’re set in your ways. You like watching movies that you can quote verbatim.  You’re ready to end a vacation after only two days away, and your world can sometimes melt without an afternoon nap.

I’m told your love for routine isn’t “normal,” that it’s one of the hallmarks of your autism. That it is awful, and life-upsetting, and makes you hard to please. But on the contrary, I find that you, with your steady, simple set of wants and needs, are easy to please. It’s the rest of the world, asking you to step outside of them, that can sometimes make life hard.

But that’s just my opinion…

And being a literalist, we both know you operate only on facts.

The fact is, I couldn’t imagine having any other brother but you, the handsome man with autism.

You’re the one who calls me up just to count down the days until my next trip home. The one who always wants to plan what we’ll eat, what we’ll watch and even what we’ll wear every time we’re together. The man who won’t be seen on Sundays without a tie and who doesn’t understand why blaring Christmas music at full volume in April would ever be objectionable.

You make me laugh. You sing and dance with me. You’re my personal fashion police every time I wear black with brown. You keep up with my Facebook posts, love interests and Saturday night dates. You make sure I’m eating at the Cheesecake Factory near my house. You check on me when I’m home sick from work and worry if I miss a gathering at church. You remember more about my schedule from 500 miles away than I do with it right in front of me.

You are my brother, the handsome man with autism, and I love you.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. 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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How I Learned to Choose Joy

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Finding my joy was easier as a child. As a teen. Even as a young adult.

The heartbreak of relationships stole that joy. The dream of being a writer that met obstacles like talent and grammar and platform and self-discipline slowly stole that joy.

Or rather, I allowed those things to steal my joy.

Suddenly, finding it became difficult.

I lived most of my adult years from ages 25-35 with a kind of pervasive hopelessness. A kind of non-joy.

I didn’t plan on having children.

I’d babysat all of my life, and I loved the hugs and the songs and the imagination, but I knew myself to be too self-centered and too spoiled to have any kids of my own.

I will never forget the sharp rebuttal from someone I’d dated who said I would be a horrible mother. To my face. I was unflinching. Hard.

Non-joyous.

As much as it hurt, in that moment, he was also right. That would have been a horrible way to mother.

Because children are fragile.

They can become wounded. Hurt. Hard.

When I had my boy, I was mostly in awe. Not happy. In awe.

Finding joy was still difficult.

He was beautiful. Perfect.

But I also had a baby boy who didn’t smile or laugh unless he was tickled or running.

He didn’t smile just seeing my face.

He didn’t giggle when I talked.

He didn’t coo unless I touched his lips.

He didn’t sleep, which means I didn’t sleep.

Until his 4th birthday, he never slept more than 2-3 hours at a time.

It was hard to find my joy.

It was hard to be joyous.

I don’t know exactly when it changed, but I do remember before it did. I was at my lowest.

He was 2 and a half, and he didn’t talk and he screamed for hours on end and he had night terrors and he ate bugs, and I swear his flesh caught fire every time I buckled him in a carseat.

I was back in college. I’d given up writing.

I was majoring in Early Childhood Education.

Because I loved kids, but I had no idea what to do with them. Because years of babysitting had made having kids seem fun, and I was not having fun. Part of me blamed my selfish nature.

The largest part of me thought “This. This is why I shouldn’t have had children. I’m incapable. I’m a horrible mother.”

I enrolled in ECE because I thought someone there could teach me what to do.

And they did.

I found a large part of what I needed to learn in the “Special Kids with Special Needs” course.

Screaming. Biting. Hitting. No cooing. No speaking. No responding to his name. Bolting — oh my God did he bolt. Eating issue. Inability to sit still. Bizarre behaviors. Aggression. Spitting. Lack of ability to play with toys. Lack of eye contact (which, in our case, was not lack of eye contact but actually a screaming banshee if you did make eye contact).

Boy: (screaming)

Me: Quit looking at him! You’re making him scream!

Grandma: I should be able to look at him.

Me: You can’t!

But there it was. In my book.

Suddenly a little bit of the weight of my own inadequacy started to lift.

While I knew I might be grasping for straws, I also knew he was textbook. I could walk down that autism checklist and put a picture of his beautiful little face right next to each marker.

Over the years, my understanding of autism and my boy’s struggles have been a bit of a roller coaster.

Because it isn’t just autism.

It’s ADHD. It’s oppositional defiance. It’s disordered language.

And it’s me. Struggling to find a way to parent him and to find a way to exist with myself.

To find my joy.

Not just in parenting or in advocating for him but in myself.

Maybe a lot of you started off with joy.

Maybe finding your way back was easier.

I’d been without it for so long that it was hard.

But it did come.

In bits and pieces.

As my boy found his voice and as I learned how to communicate with him and as I saw the absolutely heartbreaking beauty in his existence, I began to find joy in so many little moments. My heart began to fill.

I found joy in the quiet moments before he woke in the morning. So I chose to wake before he did no matter how tired I was.

I found joy in his laughter. So I chose to tickle him and chase him more.

I found joy in the peace of prayer. So I chose to pray. Every day. Even if all I could pray was “please.”

I found joy in being strong. So I chose to be strong when I wanted to cry. To be his strength when he had none.

I found joy in being his mom. So I chose to be the best one I could be.

I chose joy.

The rough days are still rough.

But there is a confidence in me that wasn’t there before he arrived.

And while it’s too weighty to put my current, joyful existence on his shoulders, I know he was the reason I began to test my own strength and find my own joy.

If he wasn’t autistic, I don’t know what our lives would be like.

If he hadn’t struggled at a painful level as a toddler, I don’t know that I would have spent hours and hours and hours every day praying for hope and peace and a plan.

If he hadn’t screamed at night, I don’t know that I would have stared up at the ceiling in the dark, rocking him, begging God to help me.

If he hadn’t needed me so much, I don’t know that I would have gotten over myself.

If he hadn’t needed an advocate, I don’t know that anyone else would ever have been more important to me than me.

If he hadn’t been autistic, I don’t know that I would ever have fully, completely and as nakedly turned to God.

And found myself.

And found joy.

So when you read about our lives and I speak from a place of love and forgiveness and joy, I want you to know that it was a hard place to find.

It’s a place I have to root myself every day.

It’s a choice.

It’s a need.

While all these other things are beyond my control and beyond my boy’s control and while life seems unfair or hard or ugly sometimes, I know now what I never understood before:

Joy is a choice.

Maybe one made out of desperation.

But a choice.

And today, like so many days before, I choose joy.

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This post originally appeared on Letters From a Spectrum Mom.

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What People Should Know About Labels Like ‘Behavior Issues’

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In 1974, my little sister who had cerebral palsy started school. The teacher put stick figure PEC pictures all over her tray covered in I assume some type of clear box tape. This little girl came home and we had the most delightful conversation. She was vocal but not verbal, and through these simple pictures, she was able to tell me about her day. Her eyes lit up as she looked at me and we formed a quiet understanding of each other.

It was on that day I realized that a disability or disorder did not define who she was, nor did it define her hopes and dreams about her future. That was four decades ago; my only sister passed away a few years later.

Since then, I have had countless experiences of the same nature. Most of my adult career has revolved around being a caretaker, teacher, and most important, a friend to many individuals who have been labeled. I always see a child, not a disability.

Christian was a 5-year-old boy with autism. The principal asked me to be a one-on-one assistant for him because behavioral issues followed him from another school. The first day I saw him, he was smiling from ear to ear and ready to go. I affectionately called him “Tigger” for the bounce in his step and his never ending smile.

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I observed these so-called “behaviors” in a special education room for about two weeks. During that time, I figured out again through a quiet understanding that he was a rambunctious, typical 5-year-old boy. No one gave him tools to communicate, and what better way to get someone’s attention? That’s right, by being overly rambunctious.

During those two weeks, I introduced sign language and PEC pictures. I asked the special education teacher if I could mainstream him in his kindergarten classroom. Both general and special education teachers were leery but gave it a shot. He flourished around his peers. He still was rambunctious, but he saved that for the playground. He participated in all activities in his general education class, rarely visiting the special education room. He was curious, inquisitive, and loved to explore. Fast forward 15 years later, he is now verbal and transitioning into independent living.

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Zion is a 7-year-old I met last year. He has Charge syndrome. He is very medically fragile to most, but to me, he was a curious little boy who spoke through his eyes and facial expressions.

The classroom teacher was petrified of him because he had MRSA and she was afraid of getting it. Thus, his classroom experience was limited. He was bored with baby toys that were handed to him day after day.

I knew he needed change, so I created a time for reading group. I would read a story and through PEC pictures I would ask comprehension questions to him and let him tell me by pointing to the appropriate pictures. Booyah! He was right on target with his reading and comprehension skills. He is such a strong, courageous little boy who is also typical in his curiosity and love of learning.

He had a simple goal of going 200 feet in the gym in a gate trainer. He surpassed that and then some. How? Because like all kids, he wanted someone to play with him. So that’s what we did. We played bowling, basketball, even dancing and there were days that he went around that 200-foot gym three times. He loves attention and likes to pull you close, especially your hair, so I taught him the art of a hug! He’s the best hugger around.

The list could go on and on with the amazing experiences that I have had with these beautiful children. In the end, they’ve taught me to see past a label and see the child in front of me. They want what all children want: encouragement, guidance, love and attention. My preschool/childcare welcomes children most centers will not accept due to a label that they aren’t sure they are experienced for, when all they needed was experience with kids.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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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When Doctors Predicted My Sister May Be a ‘Vegetable’ Her Entire Life

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I remember feeling shocked when my mom first told me the doctors had initially predicted my sister, Anna, may be a “vegetable” her entire life.

That’s not her at all.

Anna was born 24 years ago with an underdeveloped brain due to unknown causes after a seemingly normal pregnancy. Doctors were unable to determine a diagnosis, yet they somehow were able to estimate that Anna may never crawl, walk or communicate.

Anna learned how to walk at the same time I was learning how to walk. She went through a lot of physical therapy and had to wear leg braces, but today she can stand up and walk completely on her own. She can’t talk, but she undoubtedly understands speech and has her own way of communicating with us. The doctors’ beliefs held no truth. She’s completely shattered their expectations.

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Anna is a constant reminder that we have no idea what our limits are. I’m a firm believer that the perception of our limitations is our greatest obstacle. Anna was not aware of the doctor’s predictions. To her, anything was possible. 

305960_4435451017134_1570286035_n Anna is living proof that ability is not predetermined and that we shouldn’t place too much importance on it. Anna is perfect, but she would still be perfect if she’d never learned to crawl, walk or communicate. My worth does not depend on where I fall on a spectrum of ability defined by society. This fact is so easy to forget in a culture that so highly values how many zeroes are behind the dollar sign of your salary.

Anna may never function independently or have a job. And I’m going to be honest, having a sibling with special needs can be incredibly challenging at times. But her contributions to this world are in no way less valuable than anyone else’s. Growing up with her was the single most defining experience of my life, and she has helped to shape the woman I’ve become. More important, she’s brought my family more love than we could have asked for.

There’s a good chance at one point in your life, you’ll lose your capacity to do something that once “defined” you as a person. You may become sick and have to rely on the support of others. Not one person on this planet can make it through this world in complete isolation. As much as I hate using clichés, the love you surround yourself with is the only thing that really matters. If you have a hard time wrapping your head around this truth, come over to my house and watch the sparkle of pure joy in my sister’s eyes when my dad takes her for walk.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. 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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I Used to Feel Negative About Autism Awareness Month. Not Anymore.

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Forty years ago, I never saw people with autism in the community. Autism was a taboo topic, and people with it were often institutionalized. Today, people with autism are living in our communities — which are also their communities — and teaching us exactly what they have to share with the world. That’s progress.

I’m a believer in awareness that leads to education and acceptance. When my son, who has autism, was younger, I harbored some negativity about the public jumping on board for one day/month every year and then disappearing the rest of the year. I thought acknowledging Autism Awareness Month was a way of making themselves feel good. Now I see there’s nothing wrong with that. If acceptance starts with one day of them feeling better about themselves so they want to continue to raise awareness, then so be it. That’s progress.

My son is now 20 and still non-verbal. If the world can look at him when he’s jumping and flapping in a grocery store line and realize he has autism and that through his flapping he may be expressing he’s happy or overstimulated, then he may be able to navigate his community and forge relationships more easily. That’s progress.

It’s not a perfect world. People with autism and other disabilities continue to be excluded, bullied and sidelined. Wearing blue and displaying blue lights won’t solve everything, but it’s the beginning of our world moving toward acceptance. My wish for my son and for those who are on this journey with us all over the world, is that we continue along this path. In the past half-century, we’ve gone from hiding people with disabilities because we believed they had nothing to offer, to celebrating their existence. That’s progress, my friends. Progress.

This post originally appeared on Mother Autism.

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Entire Community Came Together to Give Boy With Brain Cancer His Dream Bedroom

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Five-year-old John Marandola’s dream of becoming a firefighter just came true.

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Photo credit Josh Street Design

“John John” loves everything to do with firefighters and wants to be one when he grows up. He also has Stage IV anaplastic ganglioglioma, a rare and aggressive form of brain cancer. Last year, doctors said he had just three to nine months to live. So, an organization called The Corner Kingdom Project stepped in to help make his dream a reality.

The Corner Kingdom Project is a New Hampshire-based nonprofit that redecorates bedrooms for children who are living with a disability or terminal disease. The program receives nominations for “kings” or “queens” in the northeastern U.S. Once they’ve selected a room recipient, they begin fundraising and connecting with sponsors. The organization then completes the room redesign with help from volunteers within one weekend.

For its first project, Corner Kingdom teamed up with Evesham Fire Rescue and BELFOR Restoration to turn John’s family’s living room in Willingboro, New Jersey, into his Dream Firefighter bedroom.

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Photo of John and his family via The Corner Kingdom Project, Inc. Facebook page

Now while John continues to fight cancer, he gets to be surrounded by what he loves most.

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Photo credit Catch the Action

John’s new bedroom includes a firetruck bed complete with lights, a siren, a hose and a bunk bed for his sister, Hope.

More than 200 fire departments donated patches for his quilt and the area surrounding his bed.

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Via The Corner Kingdom Project, Inc. Facebook page
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Via The Corner Kingdom Project, Inc. Facebook page

One of Corner Kingdom’s goals was to make any necessary medical equipment in the room feel less sterile and more a part of the room design. John’s bedroom requires a freezer, so the designers covered it with vinyl and created a fire station scene out of magnets.

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Via The Corner Kingdom Project, Inc. Facebook page

Corner Kingdom raised nearly $11,000 to make the project a reality. More than 50 volunteers showed up to help create the room, many of them local firefighters. “It was amazing to see how many people came together to make this project possible,” Tiffany Gagnon, Corner Kingdom’s president and founder, told The Mighty in an email. “It was humbling and wonderful to hear that other people felt that inner drive to do something good and make a difference. The people and stories intertwined throughout the project are truly amazing. ”

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Photo credit Catch the Action

Gagnon was inspired to start the nonprofit after reading stories online about children living with disease and disability. “I knew I wanted to give back somehow. I’m not a doctor, so I can’t treat these children. I’m not a therapist, so I can’t offer guidance to these families,” Gagnon told The Mighty. “I’m a designer, and I can provide nurturing and functional spaces.”

For Gagnon, the moment she realized she was truly helping John and his family was when the 5-year-old first walked in and saw his new room. “The mother cried. The little boy yelled with excitement and hopped right onto his fire truck bed and began playing with the lights and siren,” she told The Mighty.

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Via The Corner Kingdom Project, Inc. Facebook page
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John and his sister, Hope. Photo credit Josh Street Design
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Photo credit Josh Street Design
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John, Hope and the Evesham Fire Department. Photo credit Josh Street Design

For more information about The Corner Kingdoms Project or to learn more about the Marandolas’ story, visit the organization’s website and Facebook page.

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