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?”

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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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The Unique Grief of Special Needs Parents

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The day I found out my boy had autism, I wasn’t shocked or upset or wounded.  I was relieved.

I was also in denial.

My boy was smart, and I knew that all too well. He was high-functioning, and I was confident that we would be able to help him overcome any obstacles before starting kindergarten. By the time he started school, no one would even know. They might just think he was a little quirky. Plenty of people are quirky. No big deal.

So I spent that first year with few cares at all, reading a handful of books, learning about social stories and visual schedules and the basics of Asperger’s, convinced that we would be past all of it in a couple of years.

Then kindergarten came, and my world got smashed to pieces.

Things didn’t work. The new school, the new teacher, everything we had prepared for… it broke faster than I could scurry around and pick up the pieces. Less than six weeks into the school year, we requested an ARD meeting and moved him to an autism program at a different school.

We are four years further down the road now. The social differences are much more noticeable at age 9 than they were at 5.

I don’t know what it is like to lose a child. It breaks my heart when it happens, because I’m not sure if or how a parent ever recovers from it. Yet I know brave souls who somehow go on after a child’s death. I can’t imagine what the grief is like.

The Unique Grief of Special Needs Parents

There is a kind of grieving that can exist as well with having a child with special needs. My child is very much alive, and I am so grateful, especially since I have witnessed his seizures and considered the possibility, if just for that split second, that he was dying.

But the hopes and dreams I had for my child change a little more each day as I watch him move forward in life. When he was just 5 or 6, I had hope that he would outgrow certain behaviors with age, that he would function better. It was that hope that kept me going. Yet here we are at age 9, and while some behaviors have improved, others have declined.

Adolescence is just around the corner and it is scary. To accompany the grief, there is its sister – guilt.

Guilt that I did something to cause it.

That I should have noticed the signs sooner, sought a different course or path.

That I should be doing more, reading more, helping more, trying harder.

That I should spend more time, more money, more effort supporting my child.

That I should experiment with a different therapy, a different drug, a different teacher, a different diet.

And whenever I try to give myself a break, cut myself some slack from overworking, overthinking, over-trying — there’s always a judgmental comment or stare to put me back in my place.

Sometimes it brings me to uncontrollable sobbing.

I can’t make the grief or the guilt go away.

My 13-year-old and I got into a shouting match one day about it. “Why don’t you and Dad do anything? Why don’t you make him behave?” he yelled.

With hot tears washing my mascara away, I argued back, “What would you have me do? I’ve tried everything! Please, tell me what to do! Tell me! Is there another book to read? Another therapy? Another anti-psychotic drug? I’d love to hear your suggestions!”

Not my finest parenting moment.

And yet, if there was one thing I’d want other parents to know, it’s to please be aware that we — the moms and dads of kids with special needs — are sometimes hurting.

Yes, we love our kids. No, we wouldn’t trade them for anything in the world. But the love we have doesn’t take our pain away. In fact, it just intensifies it. Because we can’t take their hurt away. We can try and try and try, and we do, and it might even help a little, but we can’t make always make the pain go away.

When you look at us like we are “weird,” when you stare and ogle, when you move your kids away from ours, or worse, never include our child in your child’s activities, it’s like rubbing salt into our already raw wounds.

For my son’s ninth birthday, we sent printed invitations to school. We invited the entire class of children with special needs, as well as the entire class of children without special needs. The invitations indicated that we were serving pizza and that families were welcome. We wanted to make sure people showed up. So we bribed them with free food.

Fortunately, all my son’s friends with special needs came. We have to stick together because kids with special needs don’t always get invited to that many parties.

One boy from the other class came. One.

That’s enough to just break a momma’s heart right in two.

My anxiety directly correlates to my son’s behavior. When he’s doing well, I usually do OK. When he struggles, I get worse. I’m sure it could be defined in some complex mathematical formula. All I know is that when he hurts, I hurt more.

So next time you are at the Chick-fil-A playground, or at a church picnic, or a Cub Scout campout, try looking at those kids and their parents a little differently, please? Try to remember that the parents are desperately in love with their baby.

And by being a friend instead of a judge or a finger-pointer, you might just make somebody’s grieving a little easier.

Editor’s note: This post has been updated since publication to meet our editorial guidelines.

A version of this post originally appeared on “Sheri Dacon – Lyrics for Life.”

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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Autism Awareness Is Important, but Here's What Else We Can Do

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During each of my waking moments today — and likely all of those in which I’m sleeping as well — I will be thinking about autism in some way. You see, that’s because my beautiful, red-headed, skinny, tall, affectionate, hysterically funny son was diagnosed to be on the spectrum just after his second birthday.

On April 2, many people will be thinking about autism in some way, as it is Autism Awareness Day. My inbox runneth over with reminders from various groups to which I subscribe that April 2 is Autism Awareness Day. My Facebook page is inundated with similar reminders. It’s a powerful thing to see so many people rally together in support of a special needs community. But at the same time, I wonder what this day means to those people who are not directly affected by autism. What would it have meant to me two and a half years ago? Probably not much.

On April 2, most news outlets and many talk shows, some schools and some radio shows, will devote some time to talk about autism. They’ll spout out the statistics—1 in 68 children, 1 in 42 boys—but what do numbers mean to those who aren’t personally affected? Those who don’t have a child, a grandchild, a niece or nephew on the spectrum? Those who don’t teach children in special needs classrooms?

The statistics, while important, have been repeated so many times that I’m afraid they’ve lost all their meaning, their importance, their impact. And they shed little light on what it means to have autism. We need to be aware of more than just the statistics.

Awareness is important. By being aware, we can understand. We can empathize. We can restrain our judgments. We can attempt to be helpful. We can learn. We can teach others what we know.

So if you see a child throw a tantrum in the middle of a store, don’t judge. Don’t shake your head. Don’t mutter things under your breath. This may not be a tantrum — it might be a meltdown due to overstimulation. Children on the spectrum have difficulty expressing themselves and can get overwhelmed by lights, noise and activity around them. It’s difficult for them to process the flurry of activity that you or I can simply filter out.

If you see a child preoccupied with his or her iPad or another electronic device, don’t judge. Maybe this child is on the spectrum. Many such devices are not only used to aid in communication, but can also be great tools in helping a child who is overwhelmed by the outside world. They provide a focus, and often white noise, to the cacophony of noises and whirlwind of activity that a child on the spectrum cannot handle.

If you see a child refusing to eat certain things, eating with his or her hands, or being hand-fed by his or her parents, don’t judge. Children on the spectrum often have sensory issues with food, and avoid eating—and even touching—things of certain textures.  Autism can affect one’s motor skills as well, making eating with utensils a struggle.

If you see an older child being pushed in a stroller, don’t judge. The child isn’t lazy, and neither are the parents. Strollers are often a necessity for older children on the spectrum, whose poor motor skills make walking long distances a struggle. Also, children on the spectrum may pose a risk for elopement — or running away. Strollers can assist parents in cutting down on this safety risk.

If you see a child flapping his or her arms or walking on his or her toes, or making strange sounds, or repeating the same words over and over again, don’t look away. That child is beautiful and perfect just as he or she is. Smile at him, even though he may not smile back.

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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