When the Woman Cutting My Son’s Hair Asked, ‘What’s a Meltdown?'

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Yesterday My Boy got a haircut. Haircuts are a thing. Many parents both on and off the spectrum struggle with them.

Our struggle isn’t just getting through; it’s the possible negative scenario if he can’t get through.

Out of fairness and kindness, I do my best to prepare anyone cutting his hair that, should things go wrong, there is no need to be afraid. I’m 2 inches from his shoulder. My hand is within touching range. I’m right here.

I’m here for him, but I’m also here for you. Because My Boy has needs that you, a stranger, will be unlikely to help with. That isn’t because you are ignorant or selfish or uneducated. It isn’t because you are cruel or judgmental or indifferent. It is because my child is not your child.

You do not know his favorite foods or his favorite colors or his warning signs or his hopes or his dreams or the Christmas list he is preparing to recite to the Easter Bunny or how, in our home, that all makes perfect sense.

So to expect you to understand his sensory needs or his meltdowns or the years of behavioral adjustments that I, as his mother, have had to study and learn and re-learn, doesn’t make sense to me. I don’t expect you to see him and respond to him as I do.

So I took him to you, a stranger, to cut his hair yesterday. I thought you were a charming, sweet young woman. A beautiful African-American with long, delicate fingers, you made every effort to calm my son and make him comfortable while you cut his hair.

You moved slowly and carefully around him, reassuring me that his jerky movements and tics were perfectly fine. You checked on him repeatedly. Made certain that hair didn’t get in his eyes. Arched your tiny arms over his head so that you wouldn’t interrupt his field of vision so that YouTube Kids on my phone could continue to keep him in the chair.

And you asked questions. Concerned, friendly, uncertain questions. Questions that I haven’t answered in a long time. Questions like “What’s a meltdown? I don’t know what that means.” You didn’t know.

And I had to look at you. A sweet woman, a mother and hairstylist who sees countless people coming and going in her day, and realize that I have become so enmeshed in autism that I had forgotten people still don’t know.

When I write or speak about autism, I do so from my own level of understanding. When I answer questions, I use terminology that is the autism equivalent to Christianese: words that only those in the ‘’circle’’ understand.

Words like meltdown and OT and PT and SLP and IEP and spectrum and severe and verbal and non-verbal and sensory processing.

And autism. Yes. “Autism.” Really.

To millions, ‘’autism’’ is a son or a daughter or a brother or sister or cousin or friend’s child. It is a documentary. It is a blue light bulb. Or a puzzle piece. Or a blog post.

But to millions and millions and millions more, it is an unknown. Maybe frightening. Maybe a curiosity. Maybe nothing but a word. And if I can remember this, if I can remember that if you don’t live autism or experience autism or work with autism or write about autism, then I will remember that you are the person I desperately need to reach during this time of awareness.

You are the person that I need to remember doesn’t daily (or hourly) differentiate between meltdowns and tantrums.

You are the person that I need to remember maybe can’t understand that our lives are different from yours in so many ways and yet so very, very similar because you simply have never had the opportunity to be made aware.

Most of my opportunities to meet someone like you will be in the aisle of Wal-Mart where my screaming child is flailing and I am asking you to stand back while doing my best to safeguard him while handing you an awareness card while sweating and hot-flashing and wishing I had made a shorter grocery list.

And maybe you will be receptive or maybe you will be confused. Maybe you will understand and maybe you won’t.

But sometimes I have opportunities like this: Beautiful, quiet moments with a beautiful, quiet soul. Where you can touch and see and listen to My Boy. Where you can ask and be answered. And feel safe to ask and be answered.

You see, I am aware of autism. 24 hours a day, 7 days a week, 52 weeks per year. I am always aware. Because my child has autism.

So spending that 15 minutes to help make you aware in a safe and kind manner will buzz through my memories off and on until they begin to dissolve and finally to fade into other moments of awareness. I know because I know there will be hundreds and hundreds more.

But that 15 minutes with us gave you an opportunity that, if I had been closed off to it, may have altered or ruined your understanding of autism forever. Or, worse yet, may have simply never happened at all.

Should advocacy for autism stretch beyond simple awareness? Of course. I absolutely believe so.

Should I understand that simple awareness is the first step and is still absolutely necessary? I absolutely believe so.

And that is why I am sharing here what I shared with you. So that more people like you will have a moment, however brief, to be made aware of something that is affecting 1 in 68 children. To be made aware of something that some consider a gift and some consider a curse, but that all affected consider a matter of importance.

Aware that 1 in 68 children means we should all be “aware.”

You don’t have to be aware at my level. It’s okay that you don’t know what OT/PT/SLP/IEP/504/SPD/OMG mean.

But if you can ask and see and know the basics, then you are aware. And I am grateful for that. Because our lives will be more beautiful and more comfortable because of it.

And maybe because of this 15 minutes one day, if you do see us at Wal-Mart, you won’t need the awareness card. Because you’ll already be aware.

“Fancy,

A meltdown is similar to a tantrum, but at a much more intense level. You know how with a tantrum if you give in and give the child what they want they stop tantrum-ing? Because they were really throwing a fit for something they wanted? It was a manipulation?

When My Boy is having a meltdown, he can’t stop. You could give him what he wanted and he would be unable to calm himself.

He can hurt himself. He can hurt me. He can be completely unaware of anything around him.

It can be because he wanted something. That can trigger it. Or it can be triggered by a sound or a smell or a flashing light. Because sensory assaults can physically hurt him. Or it can be because he can’t communicate his needs.

He’s 5 and a half and he’s sitting here talking about Minecraft. But he could be thirsty and unable to process he is thirsty and begin screaming because his throat is parched and doesn’t know how to ask for a drink. And it hurts. And all he knows is that he has a need and I’m not meeting it. But he doesn’t know how to tell me he has a need. Because with autism, being able to speak doesn’t always mean being able to communicate. And not being able to communicate can really, really hurt a child.

And he could have a meltdown if I can’t anticipate his signals. If I am listening for words instead of looking for communication.

It’s confusing. There’s a lot to know. There’s a lot I don’t know. There’s a lot I am just now learning.

So it’s okay that you didn’t know. That you weren’t aware.”

This post originally appeared on “Letters From a Spectrum Mom.”

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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How I Got Over My Fear of Disciplining My Child With Autism

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I saw the signs at 14 months old, and I tricked my brain into thinking “No, I’m being ridiculous, she’s my second child, of course she’s going to be different.”

I believed people when they told me that she would “catch up.”

I thought she liked playing alone and was just shy.

“No, she’s tired, and she’s just rocking herself to sleep, she’s fine.”

Denial. Denial. Denial.

Evaluations, testing and then diagnosis day.

Denial sucks because it hangs on tight and attaches itself to you even long after you think it has left.

Blame and grief come hand in hand, and they too rest somewhere inside you; they creep up on you when you least expect them.

Intensive in-home therapy started when she was 19 months old; the diagnosis was official when she was 21 months old. For 20 hours a week, my home is not my home — it’s a school for Zoey and me. I sit down on the floor to participate. I learn from her four specialists and therapists. They’re her teachers, and I, too, become her teacher, advocate and caretaker. I’m always her Mommy who loves her.

Now here it comes…

[UNSET]

I treated her like a fragile piece of fine china, a porcelain doll I didn’t want to break. Oh, how I blamed myself! I let those emotions take over and I treated Zoey differently.

I babied her and let her get away with things I would never let my 4-year-old get away with…why, I don’t know.

When blame, grief and denial attach themselves to you, they can take over. At times, you hear yourself say “She doesn’t know any better… She can’t help but throw that cup across the room… She doesn’t understand the word ‘No!'”

Oh, but she does. She most definitely does.

Denial, blame and grief… you had me for a long time.

Zoey is just like my other child — she needs to hear the word “No,” and she needs to be told, “Get down” and “Not nice.” She needs discipline, and I wasn’t giving her that.

I treated her differently.

My daughter’s diagnosis has taught me that though she learns differently, she’s not different. She’s not a fragile porcelain doll that will break.

I noticed that when I said “No!” she looked at me and smiled, as if to say, “Yup, I’ve been testing you this whole time… I’m busted!” Now, I’m learning the difference between whether or not she’s testing me or she can’t help it. So I’m different now; I’m a changed mom. I see where I made mistakes, and I’m working hard on fixing them. It’s not easy, but it’s working.

So there’s my confession: I’m not perfect. I sure did learn more about autism from my child than I ever thought I would.

Follow this journey on Melissa’s Facebook page.

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When I Wondered Why a Woman Was Apologizing to Her Screaming Child

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I saw a woman standing outside Target the other day desperately trying to get her son into a shopping cart. He was a big kid, maybe 5 years old. He was screaming and stiff; she couldn’t even get him into the big part of the cart. He had a binky in his mouth and wasn’t talking or yelling anything at her. He was just mad, so mad. I think she was signing to him, but it could have just been her trying to make him laugh with hand movements. He was getting madder and madder. The part that was hard to watch was when he started grabbing and pulling her hair, jerking her head all over the place. He was unconsolable. Other people were staring at his mother, too.

She held him in her arms while he flailed and arched his back, shaking his head, still pulling her hair. He actually he pulled some of it out. She kept saying to him, “We have to go shopping, I’m sorry you’re so mad and frustrated. You can hold my hand and walk or get in the cart.”

The look on her face was so odd though.

She looked so calm. She never raised her voice. She just waited for the storm to wash over.

The screaming stopped for a minute, and she whispered something to him and all of a sudden he relaxed. Still holding him, she walked towards the store.

She was telling him, “I’m so sorry.”

I was trying to figure out what the hell she was sorry for.

Later that I day I saw the same lady.

I was at the mall, and this time, she had her son back in a carrier. He had a cup of binkies, a whole cup. He wasn’t screaming this time, but he was pulling her hair again and trying to throw his weight around to get her to where he wanted to go. He was tossing his binkies, and every time someone looked at him, he’d hide his face and cry.

I couldn’t believe I was seeing her again. She had the same look on her face and kept talking to him, telling him they needed to do this and that she was sorry.

Seriously… what is she sorry for?

But I realized that woman is no stranger to me; that woman is me. The kid that looks like he’s 5 years old is my son, who just turned 3. I’ve heard people talk or say snide comments as they walk by when my son is having a hard time. I remember not being a parent and seeing parents out with their kids and watching their kids freak out and judging or assuming I knew whatever it was they were doing wrong.

Everything stops and slows down when your child is having a meltdown. I have to quickly figure out who, what, where and why he might be struggling with whatever it is that sends him over the edge. I have to think about the entire week, our day and where we are. Sometimes I have no clue what actually triggered the meltdown. I just have to find a way to get through to him in that moment.

My son is notorious for pulling my hair when he gets frustrated or overwhelmed. Trust me, it hurts so badly. I muster everything I have to not scream at him or squish his little hand to get him to let go. I try hard not to yell back at him. I find a soothing tone and talk to him even though he can’t think straight. I cannot put him down when he’s like this or he will throw himself on the ground or just bolt. I’d rather have him pull my hair, even if he’s pulling it out.

My job is to keep him safe and try to understand why he’s feeling the way he is.

This is the part of autism that I have a hard time with.

Not because he physically hurts me or because people stare or make comments, but because I know he’s in so much pain.

Suddenly, I understood why that woman was sorry.

Because I’ve been sorry for dragging him out of the house knowing all he wanted to do was stay home and watch TV and cuddle with me. I’ve been sorry when he had horrible diaper rash and we had to go to the store so I could get him ointment. I’ve been be sorry when I couldn’t just give in and go home because we needed other items. I’ve been sorry when I knew the week was full of firsts for him and he was struggling to understand why there were so many changes. I’ve been sorry he was hurting so bad and I couldn’t make it stop.

This post originally appeared on Finders Seekers.

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Know Someone With Autism Seeking Employment? This Company Is Hiring.

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Last week, Microsoft made an exciting announcement. The company has launched a new pilot program aimed at hiring people on the autism spectrum.

The initiative involves collaboration with Specialisterne, a company that specializes in finding employment for people with autism. The company aims to fill full-time positions at their Redmond, Washington offices, according to a Microsoft blog.

Mary Ellen Smith, Corporate Vice President of Microsoft, wrote the blog making the announcement after attending World Autism Day events last week. She takes personal pride in the program as she has a college-aged son with autism.

It’s simple,” writes Smith. “People with autism bring strengths that we need at Microsoft, each individual is different, some have amazing ability to retain information, think at a level of detail and depth or excel in math or code. It’s a talent pool that we want to continue to bring to Microsoft.”

Candidates interested in applying for the pilot program are encouraged to email a resume [email protected]

h/t HuffPost

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I Have Nonverbal Autism. Here's What I Want You to Know.

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My 12-year-old son, Philip, has nonverbal autism but can communicate with others by typing. He keeps a blog where he describes his experiences living with autism and clears up common misconceptions. He wrote this essay in response to the question, “What do you want people to be aware of on Autism Awareness Day?”

boy with autism using an ipad I want people to know autism is another way of being. I am weary of stereotypes that make us out to be less human than neurotypical people. I have listened to people talk negatively about autism since I was diagnosed and, as a result, I learned to hate myself and think I was a monster for causing so much hardship. I can’t let others continue living under these common misconceptions about autism.

Let’s pretend you are like me. You can’t talk, but you have a well-functioning mind and can understand people. Imagine you answer everyone who says something to you, but only you can hear it. Others hear your voice saying things you don’t necessarily mean. They think that’s all you are capable of thinking. People see your repetitive flapping or tapping and they think it serves no purpose. They don’t understand that the minute you stop, the moment is flooded with lights that hum, loud sounds that echo, kids moving too fast for you to keep up with and people trying to engage with you. It is hard on me to put my stimming away, but I try.

People see your hyper movement. They prefer you sit quietly. It’s hard for me to feel my body in space, so I prefer to move because I can feel my body better.

In school, interesting subjects like math, science, social studies and language arts stimulate my thinking, ease my mind and teach me something about the world. I did not always feel this way. Many years of my life were spent in an Applied Behavior Analysis (ABA) school. I had to do my drills over and over until I was bored and frustrated with my teachers. Then I would have meltdowns. For me, ABA is not a solution. I experienced long hours meeting goals like pointing to flashcards and pointing to my own nose. I believe people need to be able to set their own goals. No person should be without a voice. I believe in teaching communication first. Meaningful communication means being able to say what I want to say. People must believe we are capable and that our minds are intact.

My parents have been great. They support me by communicating to others about autism and me. They play. They make my life as normal as possible.

I peacefully make friends now. I learn normally. My school values me, and I make my own goals. I feel loved when I am accepted. I feel loved when I am seen not by my momentary deficits but by my attributes that make me a complete person.

I think living with autism is no better or worse than living a typical life. Each life is special in its own way. I love my life with autism.

 This post originally appeared on Faith, Hope, and Love… With Autism.

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When Our Child With Autism Began Using a Letter Board

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I realized that my son, Ryan, was autistic on August 25, 2008. It was my best friend’s daughter’s birthday —she was turning 2 just a month and a half before Ryan. I’d made an appointment to check in with Ryan’s pediatrician on that day. Ryan was currently enrolled in feeding therapy and speech therapy, and he was being evaluated for occupational therapy. I wanted to make sure Ryan’s doctor was in the loop and wanted her thoughts about these therapies. Up until that day, I thought I just had a sensitive kid who was behind in some developmental milestones. I figured he would be a late talker, like his dad was.

I brought my husband, Randy, with us to the appointment, and that is when the pediatrician stated, “We can’t rule out mild autism.” She continued to talk. I abruptly interrupted her and said, “Excuse me, did you say mild autism?” She said yes and continued with the appointment. When I got home, I researched everything I could about autism. I felt like a bus had hit me. Ryan fit every single criteria. 

Every. Single. One. 

I spent the next two days feeling sad and feeling sorry for Ryan and for our family. Then I decided that was enough and I needed to get to work for him.

When Ryan was diagnosed, right on his 2nd birthday, I was sure I was going to “cure him” and that he would be in a typical kindergarten classroom with no signs of autism or a speech delay. We embarked on special diets, supplements, applied behavior analysis (ABA), floor time, speech therapy, occupational therapy, feeding therapy and even physical therapy. I was told to engage him in every waking hour. He needed “intensive early intervention” and I was to lead this. At the time I was seven months pregnant with my daughter, Grace.

I look back at the initial diagnosis and the following years, and I don’t feel like I have a lot of regrets. Randy and I did everything we could to help Ryan. We left no stone unturned. The thing is, to the outside observer, Ryan became less “mild” and more “severe.” His odd behaviors were hard to ignore. The hand flapping and screeching increased. He had repetitive interests and movements, and he seemed uninterested to the outside world. He gained some speech at 23 months old and then gradually lost it. He then regained speech at 4 and a half years old, with almost 50 single words, only to lose it after having two seizures within two weeks of each other. He had no words after that. He still cannot speak.

We moved to California for Randy’s career in July 2011. I’d researched autism in the state of California and definitely felt as though this was the right move for our family. California has been good to us; Ryan attended an excellent private preschool that the school district paid for, we receive respite (free babysitting with a qualified provider) through the state, and I’m able to stay home with my children because the state pays me to take care of Ryan. 

Some days are hard. And I don’t mean the kind of hard days most people have. 

I mean “hard” as in calling 911 because I’d accidentally left the garage door open and I thought Ryan had wandered from our home. Randy was at work and Grace was just 2 years old. I was sure my son was dead; there was no sign of him. He’s fascinated with water and had no regard for street safety at 4 years old. After 15 minutes, with police officers at our home, I found him in the house, in a hidden corner of my bedroom. I still worry daily that his impulses will get the best of him and that he’ll wander off.

I mean “hard” as in I dreaded waking up every morning in December 2012 – February 2013 because Ryan would awaken in pain and cry as I’d get him on the bus (this is when he had duodenal ulcers and severe gastritis and could not tell us).

I mean “hard” as in waking up in the middle of the night on January 1, 2013 to Ryan screaming in pain and clawing at me desperately for an hour and a half. We found out the next day via X-ray that he’d swallowed small screws. Ryan has pica, which means he eats many non-edible items even though he knows he shouldn’t.

I mean “hard” as in getting a call from my son’s school stating that he’d had a seizure for three to four minutes and was now sleeping on a bean bag chair.

Everyday life in the Curry household isn’t easy. I have countless stories like these that show the worry and frustration our family constantly goes through. I share all of this so those of you who are not affected by autism on a daily basis know what it can be like for an affected family.

But not every day is a bad one. There are some good days. OK, there are some great days.

This past year has been nothing short of life-changing for Ryan and our family. We have so much to celebrate, and I’ve never been more hopeful for his future than I am right now.

Ryan may not be able to speak, but we’re finding his voice. He’s been working with professionals and with me for over a year now with Rapid Prompt Method (RPM). We started with Ryan at 7 years old with answering choices for academic lessons. Ryan progressed from choices to spelling out his answers on three stencils (using A-I, J-R, S-Z) to using just two stencils, using a 26-letter board that can be folded in half for A-O and P-Z. He can now answer and communicate using a full letterboard.

Some of the things he’s expressed to us in the last eight months seem implausible. We’ve thought, How could an 8-year-old boy have such complex thoughts when he is still watching the same “Mickey Mouse Clubhouse” episodes on his iPad that he watched at 18 months old? The boy who seemed to be so much in his own world, who preferred to play with ribbons or beads all day long. The boy who was still just matching colors and letters in school.

The thing is, Ryan has always been learning. That’s the misconception with autism. The thought is that these children don’t understand what we say to them. Over and over again, professionals told us to speak in “short phrases” and to “keep it simple.” We’re told that because our kids cannot demonstrate understanding, they don’t understand. I say that this is simply untrue.

Ryan can read and spell. He taught himself.

Ryan has compassion. He almost seems to have too much compassion at times. 

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He’s affectionate. He cares about others.

He has an imagination. He wrote a story about a basketball player, a zebra and a lion. It can be found here and here. These are some of the thoughts that Ryan has spelled out:

“MY MOM IS THE NICEST MOM IN THE WORLD.”

“IN MY MIND, I KNOW THAT MY MOM MISSES HER DAD.”

When he got into trouble for doing something he wasn’t supposed to do he stated, “IN HINDSIGHT I KNOW BETTER.”

While in a session with another boy who was having difficulty, he asked, “ARE YOU OK, WILL?”

In that same session he stated, “I WOULD LIKE A LOT OF PETS.” And when Will told him pets are an endless amount of work, Ryan retorted, “YES, WILL, HOWEVER, MOMS WILL CLEAN.”

“MY TIME IN WISCONSIN HAS FELT HAPPY.”

“I AM BELIEVING ALREADY GOOD THINGS WILL HAPPEN.”

“I AM WONDERING IF MY GRANDPA BOB WOULD ACCEPT ME?”

“LONESOME TODAY.”

“I THINK GOD IS FAMILY BUT MYSTERY. I AM SAD. CAN’T HE MAKE ME TALK? IT IS NOT EASY, BUT I TRY.”

So this year I challenge you to rethink what you know about autism. Try and put any preconceived notions aside. Ryan and other children and people with autism are just like us. 

They want to be loved. They want an education. They want friends. They want acceptance.

Their bodies don’t always show this. In fact, their bodies may do the exact opposite of what their mind is thinking. Examples of this are nodding for “yes” when really meaning “no,” walking away from a situation they really do want to be a part of, and laughing when they’re being scolded when in reality they know the situation is not funny.

I also ask that today, and going forward, you speak to people with autism just as you would want to be spoken to. Treat them as you would anyone else.

What I would also like to share with all of you is to never, ever give up. Randy and I and our entire family have more hope than ever for Ryan. We truly believe he can do anything he wants to do in life. And we hope he’s up for the challenge. I know we are.

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