This Is What It Felt Like To Be Bullied as a Child With Autism

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This is a fictional tale based on my experiences of being bullied as a child. I have Asperger syndrome.

Her name was Lullaby.

Each day Lullaby woke up and smiled gently as the sun peeked shyly through her rose petal-colored curtains.

Her name was Lilly. 

Each day Lilly would wake up and for maybe ten seconds she would be at ease — until she remembered she had school that day. Then the butterflies in her stomach would start to flutter. She’d wonder if the bully in her class had a good morning at home and maybe would go easy on her that day.The sun would peek in through her curtains. She smiled. Maybe, today, the bully would only spit at her.

Lullaby stretched, then pulled her prettiest dress from her closet. She had fairy school that day, and they were going on a trip to the enchanted lake where she and her friends would go on little boats made of tree bark and laugh with the fish. They’d joke with the squirrels and fly with the butterflies. Lullaby could hardly wait.

Lilly pulled on her uniform. She likes her uniform; it makes everyone look the same and seem equal. In her pocket she carries a small pink pearl button that she handles when she gets nervous. She bites her lip until it’s bleeding as she thinks about the trip her class is going on that day. They’re going to a lake to go canoeing. “Wet and cold water,” Lilly thought, with dread. They would be expected to get into small groups for lessons on safety. Lilly prayed Tina would come in today. Tina is Lilly’s best and only friend. She’s also bullied. She likes to read. She’s quiet, shy and, like Lilly, has something called Asperger syndrome.

Asperger syndrome makes it hard for Lilly to say what she feels sometimes and makes some things difficult. She has a gift of being able to talk to animals; they always know what she means. Lilly climbs into trees sometimes, hiding and gently listening for the fairy folk she’s sure left her in this world. Her mother has told her the wiring in her brain is special and that’s why she finds loud noises painful, why too many words at once from a person make her want to run, and why she has always felt like she’s on the outside looking in. She knows she’s special and knows she has a gift the whole world will know about one day. If only the bully would know that.

Lullaby leaves her flower and swings down the stem. She flicks her wings out and flies up and over the meadow towards her school, where her friends cheer to greet her. She’s so lucky, she thinks, to be so popular and to be going on such a nice trip.Her best friend, Story, comes running over excited to be sitting next to Lullaby on the boat. They giggle as they plan their day.

Lilly slams the door and makes her way to school. She’s glad to see Tina up ahead holding her mother’s hand. She hurries to catch up and they plan their day. They decide to try to sit near the teacher. The bully won’t sit nearby. 

The bus draws in and they pile in. The bully pushes to the front to get first pick of the back seats. Lilly and Tina get on, ignoring the bully.

Lullaby has finished her lunch and is dozing, the hum of grasshoppers around her in the grass is soothing and she contemplates jumping on one for a ride. She’s to tired, all played out, and Story has made her laugh so much.

Lilly tries to sleep on the ride home. Tina tries to smile and tells her it doesn’t matter; they will be home soon. She says that no one saw Lilly fall into the mud when the bully tripped her, and it didn’t matter her lunch was ruined. Their moms were clever, she said, to pack double lunches in case they somehow lost their first lunch.

Lilly didn’t answer.

She shut her eyes tighter and knew one day she would tell Tina that none of this was real. That it was all make believe. That she wasn’t really sitting on the bus.

She was asleep in a meadow

Her names was Lullaby.

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10 Things I Wish Someone Told Me About Parenting a Child With Special Needs

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There’s no way you’d spot us in a crowd. We don’t have a secret handshake. But somehow, special needs parents always manage to find each other. Maybe it’s that unmistakable look of exhaustion and resolve many of us wear. Whatever it is, I’ve been part of this family for 20 years.

Even after all this time, I still sometimes stop myself and ask, “How in the world did I get here?” When my son was initially diagnosed with autism and epilepsy years ago, I didn’t know anyone else with a child like him. That was back in the dark ages, before the Internet. There were no websites or blogs to turn to for information and support. There was so much I didn’t know and so much I was desperate to learn; I could have used advice from a seasoned elder.

Now I’m that mom. The one with some mileage on her. There’s no road map to navigate raising a child with special needs, but here are some pointers I wish I’d had when I first set out on this journey.

1. You are the expert on your child. No one else. Not your child’s doctor, his teacher, his neurologist and certainly not your Great Aunt Gussie who raised 10 kids of her own. Listen respectfully to them, but remember they are experts in their own spheres, not yours. All of them —therapists, family, friends — go home at the end of the day. You are in it for the long haul, and you know your child better than anyone.

2. You are parenting a person, not “treating” a cluster of “symptoms.” When your child is first diagnosed, you’re going to hear a lot about the deficits — all the things your child isn’t doing. Don’t lose sight of the fact that behind the “special needs” label there is the same wonderful child you had before the diagnosis, who needs your guidance and love. There’s a saying so popular in the autism community that it is practically a cliché: “Once you’ve met one person with autism, you’ve met one person with autism.” Your child is unique. Yes, you will get all caught up in searching out treatments and therapies, but please take the time to enjoy him right now, because he won’t be a child forever. Don’t let your fears of the future rob you of the pleasures of the present.

3. People will stare. This will eat at you in the beginning. It’s natural to feel uncomfortable, resentful, even mortified. It is also a natural instinct for people to look at anything that’s a little out of the ordinary. Your child’s quirky behaviors in public may draw attention, and what if they do? Stop worrying about it so much. Who cares what strangers think? And I can promise you this: You will learn to never, ever judge any other parent whose kid acts up in public. Eventually, you will figure out how to handle people’s inappropriate questions. I’ll never forget how taken aback I was at a wedding 15 years ago when my husband’s uncle abruptly asked, “Is there any hope for your son?” Sometimes, people may imply that you just aren’t trying hard enough. Or they will offer unsolicited advice or press the latest miracle cure on you. Worst of all, they will talk about your child right in front of him. Don’t let them. And don’t you do it either. Your child may not be verbal (yet), but his ears are working just fine.

4. Take care of yourself. Really. I’m not talking about a trip to Canyon Ranch. A study released a couple of years ago found that autism moms have stress levels similar to combat soldiers. I know there’s nothing you wouldn’t do for your child, but you count too, and you’re no good to anyone if you don’t stay healthy and strong. Physically and mentally. Medication is there for a reason. No, not for your child. For you. Don’t be afraid to ask for help if you need it. Because as all special needs parents know, we need to live forever.

Mick&Me

5. You will meet some of the best people you never wanted to know. Other special needs parents will not only validate your feelings and prop you up, they’ll be your best source for information. They are the ones who really, really get it. Embrace those fellow travelers — they’re your lifeline. Especially the wise-cracking ones. Your sense of humor will save you.

6. You and your partner/spouse/significant other are a team. Your child has no one else who loves him more. No question, having a child with a disability is stressful, but it’s imperative that you work together. Feelings can run high; you may each react differently to the diagnosis or disagree on treatment. Don’t focus on what might have been; focus on what you have together. Check in with each other frequently; keep talking about what you are feeling and experiencing.

7. Focus on your other children. When a child is diagnosed with a significant developmental problem, it affects the life of every single person in the family. It can be a big adjustment for siblings. Find ways-frequently-to give them your undivided attention. Let them express the full range of their feelings, in their own words.

8. There will be people who tell you that autism is a gift. Or that God singled you out to be a special needs parent for a reason. Don’t believe them. You weren’t singled out or chosen. What you are doing is rising to meet challenges and simply doing what every good parent does: giving your child everything he needs to thrive. My son has many abilities and strengths; he can be warm and funny and empathetic; he has an amazing memory; he’s a whiz with video games. But I’m not going to lie: Those early years with him were hard and scary. So is reaching the age of 20. His disability isn’t a gift. What is a gift is the joy he and his older brother bring to our lives.

9. Celebrate your child’s achievements, regardless of how they stack up against those of siblings, peers, relatives, fuzzy memories of your own youth or dreams you may have had for your child before he was born. Because there will be many. We waited years to hear our son’s first sentence, and it was a gem: “Mommy, snuggle me.” Your child is going to surprise and delight you, and you will never take any of those hard-won milestones for granted.

10. You will learn with utter certainty what matters most. Parenting a child with special needs will teach you about patience. Humility. Determination. Resilience. Acceptance. You will love your precious, beautiful child more fiercely than you ever thought possible.

This post originally appeared on Kveller.com as part of their series for Jewish Disability Awareness Month.

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To the Dad Who Felt Guilty for Not Knowing How to Raise a Child With Autism

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Dear Dad,

You and I have been through it all. Rather than feel sad about the time and laughs and talks we missed, I like to think about how much stronger the tie binds us has become. It’s been pulled, knotted and tested in every way possible. I know the autism diagnosis I received not even a month after my 21st birthday was one of the bigger stressors in our relationship. Autism combines amazing strengths and surprising deficits, and I’ve got both.

For a long time, I thought your distance was because you didn’t believe the diagnosis. That made me feel like you were denying just how hard some things are for me and just how great I am at others. It took me some years to realize that the reason you tip-toed around the a-word was not at all because you disagreed that I have a shockingly good memory, some mighty quirky social skills and a hard time communicating my emotions. The apple sure doesn’t fall far from the tree — and that’s just it. You knew that.

You knew there wasn’t a thing wrong with my social skills or my complete infatuation and insistence on talking about cats. You knew there wasn’t a thing wrong with the way I tended to lose control of myself when my emotions got too big and I could no longer put them into words. You knew I wasn’t broken. You knew I was a whole lot like you. The reason you were so wary of the word “autism” was because it carried a medical tone, and you never wanted me to see myself as diseased or broken or defective in any way. I didn’t need treatment and medications and cures — I needed to be supported in a different way, and the very first step in all of that was to know there was and is nothing wrong with me at all.

More recently, I’ve picked up on the ways you felt sad, maybe even guilty, about my life as a little one.  No one thought of autism when a 2-year-old girl talked about the life cycles of aphids or when a 4-year-old read chapter books on long car rides. No one thought of autism when that girl screamed bloody murder and then flat out refused to put on tights of any kind, or when she rejected every shoe in the store, or worse yet, when she refused every food option in the house. It wasn’t an issue of my autism being too subtle for anyone to recognize; it was an issue of many professionals being oblivious. They lauded my strengths, and they put the blame on me for my weaknesses. Try harder, you’re smart enough to know better, stop being so dramatic!

They told you to take control. They told you I’d eventually cave and eat all those foods my brain didn’t register as edible. They told you that when my ankles and knees and wrists hurt, that sometimes kids say those sorts of things for attention, and if I didn’t get any, I would stop.

I know it hurts you because I’ve heard you say so many times that you would have done so many things differently, had you just known. I know you see how much my little sister has been able to achieve since her struggles, though different, were identified earlier than mine.

But, Dad, here’s the thing, and please, listen closely: You did so much right.

christmas 2 years crop You knew that putting clothes on a kid that made her scream served absolutely no purpose except to show power over her. Out went the tags from all my shirts. You knew that starving a 3-year-old was completely senseless, that I wouldn’t have eaten a raw piece of broccoli if it was the one way available to save my own life. You knew that encouraging my quirky and intense interests was a fabulous way for me to learn far beyond on the classroom; we discussed Morse code, and I watched as you plotted a pin on a big map of the world every time you spoke with another person on your home-build radios. When I wanted to shave, just like Daddy, you didn’t explain that girls become women and that whole thing… you quickly came home with a kid’s shaving kit so I could shave with you. We cooked, and we camped, and, though it’s hard for me to believe I ever did, we inspected the grubs that came up in the soil when you worked in the garden. You wrapped my sore joints and gave me an ice pack. You played the song you wrote for me when I was a baby — no lyrics, just the most beautiful melody I’ve ever heard, and also one of my earliest memories.

You raised an Asperger kid in precisely the way I believe almost every kid should be raised. As an advocate. I engage with many parents and answer their questions about which therapies, which groups, which pre-set curricula to choose. I tell almost everyone that most kids need to talk to people in Bolivia on hand-built radios, then plot the spot on the map, and hold grubs in their hands, and listen to their very own lullabies and learn to find the keys on the piano.

There’s certainly a lot fighting against me to have any kind of normal life. But I cannot imagine a reality more incredible than the one I live. I have a Master’s, a great many irons in the fire that advocate for autism and fill my time with my greatest passion, and no kids but one delightful kitty. Not to mention, I have the confidence to tell everyone I meet all about that kitty of mine because my kitty obsession is what makes me who I am.

You never wanted me to think of myself as broken, and Dad, there is nothing broken about the way my brain processes the world. It’s just like yours, except I must have gotten the talking gene, whereas you got the listening one. Nothing makes me prouder than someone saying I’m just like my dad. So much of the person I am and the confidence in that person comes from the example you’ve set all these years.

If I could go back to diagnosis day, almost exactly six years ago, I would tell you all this right up front to save you the sadness of the time you didn’t know you’ve done everything just right.

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Why My Daughter's Unusual Reaction to a Change in Plans Was a Big Deal

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Screen Shot 2015-01-28 at 8.29.22 AM Life with my daughter, Bethany, is unfortunately not all roses and lollipops, that’s for sure! She has a tendency to be uncooperative, and she can throw some pretty mean and aggressive tantrums.

So it’s a major big deal when Bethany has an awesome minute of happiness and good behavior, let alone a whole weekend of pure stellar behavior bliss.

Let me tell ya, we don’t take good, happy moments with Bethany for granted, ever.

We celebrate every good and happy moment we happen to be blessed with.

This weekend was full of many such blissful moments, despite experiencing some near disastrous blunders cause by yours truly.

This weekend, Bethany managed a catastrophe well. In fact, she actually handled two catastrophes well.

On Sunday the plan was for Bethany’s aide, Kristin, to take her to the library and then to her special needs social group, Flash Club.

Except, I neglected to tell Kristin which library to go to. So naturally she took Bethany to the only one she knew existed, which was closed. She called me and I quickly told her which library to go to.

But then Bethany decided she didn’t want to go to the other library. She stubbornly dug in her heels and refused to budge off the closed library porch. She wanted to wait right there until it opened again… on Tuesday.

Thankfully, Dad just happened to drive by at the right time and saw Kristin trying to convince Bethany to get back in the car. They finally talked her into it and off they zoomed to the open library.

The fact that Bethany didn’t react to this unplanned incident by having a violent meltdown or a “stop and drop to the ground” moment is pretty phenomenal. She handled this glitch like a real trooper.

Later at Flash Club, Bethany experienced another glitch. I’d forgotten to pack her sneakers for basketball. All Bethany had to wear on her feet was snow boots. (I still can’t believe I forgot to send her sneakers with her!)

Her club leader just happened to have two pairs of sneakers with her and Bethany actually agreed to wear one of them — another unbelievable reaction.

Normally, unplanned changes in routine or incidents like these are catastrophic to Bethany and send her over the edge into despair and despondency.

But this time they didn’t. This time she handled them. This time she paused, took a deep breath and soldiered on.

This time she did not let a catastrophe ruin her life, hallelujah!

This post originally appeared on Faith, Hope and Love.

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When My Son Had a Public Meltdown, Everyone Stared and Judged. One Woman Didn't.

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My boys are only 19 months apart. Shortly after my oldest son’s second birthday, his meltdowns became increasingly explosive. I felt at a loss. Autism was not on our radar; I thought maybe my child was just willful.

One day I took the boys to the mall. We had a routine: we went to the play area, the store that had the Thomas the Tank Engine table, the fish tanks and the food court for a pretzel. I never realized, it but it was always in this order. But on this day I only planned on the play area because we were meeting the grandparents for lunch. I had no reason to believe it would be an issue.

I wore Eli in a sling carrier and held Andrew’s hand. Andrew was so excited because I usually took a stroller when going out in public. He played happily until it was time to go and willingly put on his shoes. So far so good. But when we walked out of the play area, I turned right instead of our typical left.

Then it began. Andrew started shouting and screaming, “No!” He threw himself on the floor in the middle of the mall and had a full-on meltdown. Having the baby in a sling, I couldn’t pick up my screaming toddler. Out of the corner of my eye I could see people shaking their heads and muttering.  I even heard one mother say, “My child would never do something like that.” I’m sure she meant for me to hear. I knelt by my son to try to reason with him or at least comfort him. He tried to hit me; now I was trying to protect Eli. All around me people were staring. It grew quiet as everyone stopped what they were doing. I wondered what I was doing wrong to have a child like this. I had no idea what to do next.

In the midst of this chaos, a tiny old lady tapped me on the shoulder.

“Sweetheart,” she said, “Let me hold the baby so you can tend to your son. I’ll sit right here on this bench next to you so you can see me. We’ll be fine.” It shows you my state of mind that I let her. She sat on the bench, her feet barely touching the ground and cuddled my little one. I gathered Andrew in my arms and carried him to the bench as he kicked and screamed. We sat there while he raged and cried. Every so often I would look at the old lady. She talked to Eli and made him laugh. In less than five minutes he was asleep in her arms.

I focused my attention on Andrew. I told him about going to see his grandparents and going to eat at his favorite restaurant. After what felt like an hour — but was really only 15 minutes — he was ready to go. As I took my sleeping baby from the old woman, she looked at me and said, “You were wonderful.  You never got angry, and you showed your son love. You are going to be just fine.”  Like that, she was gone.

That was the first time I realized my son might not be exactly typical. I didn’t know what was wrong, but I felt in my heart that something wasn’t quite right. I truly don’t know what I would have done without the help of this sweet woman. While others were judging me, she helped, and her compassion brings tears to my eyes to this day. Her words gave me strength and helped me persevere. Twelve years later, Andrew is an amazing young man, and we are fine.

She was right.

two boys at the zoo

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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The Moment My Son Taught Me What It Means to Dance Like No One's Watching

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The author and his son We left the pool earlier than my son, Darrin Khan, wanted, but on Sunday the pool closes at 6 p.m. We sat by the side of the pool for a while hoping the lifeguards would blow their whistles and invite the one remaining child back in. After some convincing, we headed for the showers. DK enjoys this part because unlike at home, he can use as much foamy soap as he wants. I’m still not sure what he does with it, but he really likes it.

Eventually we head for the lockers where I get him dressed. This day, we picked lockers that were right in front of the large mirror above the wall of sinks. Once he had his socks and underwear on, he hopped up on the bench facing the mirrors and started dancing to the overhead music. I don’t recall the song, but Chubby Checker would have been impressed with his moves. I enjoy watching him dance and I love that he gets so much joy from it. But I have to admit — I had mixed emotions this day because of the two other members in our locker area. I confess, it’s my own hang-up, but I have a chip on my shoulder about people judging my son, who has autism. Their smiles put me at ease a bit and DK wasn’t about to pass up a chance to dance to cool music with mirrors present. Then one of the men said to me, “That’s what we all would do if it was politically correct.” I’m not sure about the politics, but I understood his meaning just fine – and he was right.

It took me almost 40 years to be comfortable enough to really be myself. Part of my shyness as a kid came from the understanding that other kids were judging my every move. One of the reasons I loved sports was because I could increase my social rank without saying a word. I envied the kids who seemed to be oblivious to the judgment all around us. So, while I often find myself right back in middle school, aware of the judging eyes all around my son, I’m also in awe of my son’s complete lack of concern about it. For his entire life he’s embodied one of my favorite quotes: Dance like no one is watching, love like you’ll never be hurt, sing like no one is listening, and live like it’s heaven on earth. — William Purkey

The author's son wearing a yellow shirt I would be lying if I said my son’s style makes life easy for him. But conformity is a necessity in school and many aspects of life. The education system was not designed for kids like Darrin Khan and his desire to literally dance to the beat of a different drum meets conflict with a system that requires kids “get with the program.” So therein lies the dilemma that parents with kids who don’t fit the model of modern education face. We fight for the ideal while coming to terms with the fact that “not that bad” might be the best we can do – even in the best schools. Kids like DK are the first thing we think about when we wake up in the morning and the last thing we think about when we go to bed at night. They light up the lives of those around them and they consistently steal the hearts of those who get close to that light.

Last night we took him to a mixed martial arts class for the first time. The instructor is amazing and knows Darrin Khan. True to form, DK found joy in the experience while failing to meet the class objectives. What can I say? He’s a dancer, not a fighter. Communication is more than just speech and we would do well to listen with more than our ears. I would tell him to “dance like no one is watching,” but he’s already there. We need to catch up. It does seem odd that we spend so much time teaching our kids to conform while spending the rest of our adult lives teaching people to be authentic.

This post originally appeared on LinkedIn.

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