When a Stranger at the Airport Reminded Me I'm Not on My Journey Alone

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Autism, sometimes you make things a little more difficult. Sometimes you make things downright hard.

An airplane trip isn’t simple, for example. It requires planning, as do vacations, etc.

I’m a true believer that autism is just a part of who I am. It’s what helps make me, well, me! But I must admit, during the hard moments, it’s hard. It’s hard to not be frustrated with you, autism, and the challenges that come with you.

Like when I don’t feel well and can’t explain what hurts or how it hurts. When I sit at the doctors’ office, looking helplessly, and saying, “It hurts, it hurts.” I don’t expect you to magically know the answer, but sometimes I wish you could read my mind. When I walk through airport security and am scared by the security machine and a pat-down can cause me to flinch and scream loudly. When I reach my limit and scream. When the whole airport turns in our direction… I wish it was easier sometimes.

But you know what? I’m reminded of how far I’ve come. I’m making progress each and every single day.  Not every day can be easy, but the good moments out-number the bad. I have a family and friends who love me, and believe in me, and therapists who believe in me and are there to tell me they are proud of me.

A moment not too long ago, after a long traveling day, aircraft trouble and missing our connecting flight home, even my best attempt at holding it together only lasted so long. I screamed and started to cry. Within a few moments, I was calm again. A mom, her son and her husband had been traveling with us all day, and were standing near us in line to rebook our flight when I screamed. LOUDLY.

My mom asked their son if I scared him, to which I said I was sorry and didn’t mean to scare him. His mom looked at my mom and me and said it was okay, not to worry, her friend’s daughter had autism. Then — and this moment will stay with me forever — she told me she thought I was doing a great job, and I could tell she meant it.

So often we are judged, and people stare or comment, but this other mom didn’t do that. I had just screamed so loudly that a large section of the airport could hear me, and she told me I was doing a good job. Sometimes a good job is simply trying your hardest and giving it all you’ve got. I’m always reminded that I’m not on this journey alone. Thank you, autism, for continuing to teach me so much about life.

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I Told My Partner I’m a Package Deal. He Responded With 3 Perfect Words.

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To the man who loves me (and my brother with autism):

I fell in love with you when I was 14. No, our lives haven’t been the typical fairytale romance story of many high school sweethearts. We’ve fallen out of touch, many times, and reconnected many times, only to fall out of touch again. But when I found you again at 19, this time, I knew you were here to stay.

At 19, we weren’t thinking about what our future would hold. We stayed up late, went to concerts, went out for ice cream in the summer and cheered for the Dawgs at Georgia football games. I was in love with you, you were in love with me, and I loved being young and in love. In the back of my mind, I always knew my brother with autism would become my responsibility someday, but it was a far-off concern, one that wasn’t tangible, one that wouldn’t happen for many years, and it certainly was not a concern that 19-year-old me needed to talk about with 19-year-old you.

author with boyfriend

Then 23 happened, and because of life’s ever-changing and unexpected circumstances, the responsibility started to became real. My parents started talking to me about finances, about Josh living with me in adulthood, about possibly buying property and hiring staff. I had to sit in on the “tough conversations.” I learned more about what was going to happen when my parents died than any 23-year-old should ever have to know. I was constantly thinking about my future, and where and how Joshua could (and would have to) fit in. My parents began the emotional conversations with me about how to make this “burden” just a little bit easier. I was terrified.

I told you all these things: my fears, my guilt, my hopes and my dreams. I told you that I loved my brother, but sometimes I felt trapped into a lifetime of caring for him. Some days, I felt incredible guilt for not wanting the responsibility. But most days, I felt incredible joy knowing that my brother and I shared such an incredible bond through intense, unconditional love; a bond that I knew was unbreakable. Many times, as I thought about all of these things, I cried in your arms.

“What if I can’t do it?” I asked you, “What if I can’t do all of these things I need to do? What if I fail him?”

You gently cupped my face in your hands. “It will all be okay,” you said, “I promise.”

You sat with me through that first planning meeting, and you listened to the future goals for what mine, and Joshua’s, life would look like. You learned about this part of my life, the “autism sibling” part of my life, quickly and unexpectedly, in a way that I felt was less than ideal. Sure, you had seen it before, but not like this. Not this logistical side of it, not this legal side of it, not this very, very, vulnerable side of it. I cried in your arms some more.

“Does this scare you?” I asked. “Does it make you not want to be with me anymore? What do you think about all of this?”

“I think it’s something that I need to learn,” you said, “I don’t know much about it. But you and I will, we will learn it together.” I cried in your arms again, this time, tears of relief.

A few weeks later it came up again. We talked about what life would look like, and again I told you.

“You know,” I said, “I’m a package deal. I come with Josh, and that’s never going to change,” I said. “You get me, you get Josh.”

Package deal,” you said. “Period.”

author with brother

You’ve taken this on with me, this life of unique challenges, heartaches, joys, and triumphs. You could have said no; some people would have. Instead, you spend time with Josh, you talk with him, you ask him to come with us to the grocery store and sometimes to the movies.

You come with me to take him bowling with his friends. You tease him about his love of diet Snapple and easy-cheese. You buy him movies for Christmas, without me saying a word, because you’ve noticed him watching them over, and over, and over again. Sometimes, you even surprise him with diet Snapple, just because you know how much he loves it.

It doesn’t scare you that when I think about houses. I always talk to you about which part Josh will live in. It doesn’t make you mad that he will live with us someday. It doesn’t make you mad that such a huge part of me is, and always will be, dedicated to him, forever. It doesn’t make you mad because you love all the parts of me, including the incredibly vulnerable parts, the parts that others might have walked away from.

You could have said no. You could have walked away. But you didn’t. You stepped into my “autism sibling” world, and you never looked back.

So, to the man who loves me (and Joshua), thank you.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/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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12 Things Not to Say to Parents of Kids With Autism

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When you say, “My son/daughter has autism” people don’t know how to respond. Most folks know not to say, “Woo hoo!” and high-five me, so instead they fumble for their speech, they turn their gaze away, they make horrible social blunders, and then quickly try to escape an uncomfortable situation.

We get it. We know you are at a loss for words. We know you don’t know what the right response is. We know you feel awkward, unsure and really, really wish you had never stared rudely and commented on our child’s behavior, but once the cat is out of the bag, you can’t pretend you didn’t let it out. And neither can we.

So during this month of Autism Awareness, I thought I could help those awkward, at-a-loss-for-words people out as much as I could. Seeing as how every situation is different and every child with autism is different, I might not be able to tell you exactly what to say, but, I can give you some helpful hints on what not to say.

Boy sitting in a floral-print chair wearing a blue t-shirt

1. “But he looks so… normal?!”

Um, OK… thanks? I’m not exactly sure what “normal” looks like, but, I think my kid is gorgeous.

2. “Are you sure he’s autistic?”

Yes, I’m sure. I realize if he isn’t spinning, flapping, asking to watch Judge Wapner or yelling, “Bazinga,” he may not seem autistic to you, but, the 200 specialists we have seen, trying to reassure ourselves of that very question, confirmed that he is indeed autistic.

3. What do you think caused it?

We don’t know. We wonder, we question and we agonize over everything we did, everything we ate, and every place we went while pregnant. We spend countless hours blaming ourselves, the environment, genetics, etc., then we finally realized, what caused our child’s autism isn’t nearly as important as what we are doing to support him. We want you to realize that, too.

4. “Ohhhhh… what can he do?” 

I said that he has autism, not that he’s a circus monkey. We realize that there are misconceptions that all people with autism have some sort of exceptional ability, and although some do, some do not. So when you ask a mother this, not only does it reinforce that her child is “different” in the neurotypical world, it makes her feel like her child is “different” in the autistic world, too, so just don’t.

5. “Maybe if you just provided him with some discipline.”

Duck. If you say this, then either wear a face mask or duck very, very quickly.

Autism is not caused by poor parenting or a lack of discipline and what you are witnessing is not a temper tantrum. What may look like an “I’m not getting my way” tantrum is a sensory meltdown by a child who cannot tell his mother what is hurting him, how he feels or how to help him. This inability to help our child already feels like a punch in the gut; don’t add to our pain with your ignorance and judgments.

Boy in t-shirt and shorts standing near beach shore

6. “I try to talk to him, but, he always ignores me. Maybe you should get his hearing checked.”

We have. He is not deaf. He hears you. He sees you. He knows you are there. Just like he knows when you don’t see him, when you don’t hear him and when you give up on him. Just because he does not speak to you, does not mean he isn’t trying to communicate with you.

7. “Maybe he just likes to be alone.”

He may “prefer” to be alone, but, that doesn’t mean he “likes” to be alone. Being alone is easier than trying to understand facial expressions, body language and conversations that are difficult to understand. Watching them be alone hurts, having people assume they “like” being alone, and letting them be alone, hurts even more.

8. “He’s not that bad.”

I didn’t say he was bad. I didn’t say he was broken. I didn’t say how he sees the world is wrong. I said he has autism. “Different” is not “bad.”

9. “He’ll eat when he’s hungry.” 

No. He. Won’t. (Duck again.) And let me ask you, would you test your child with this theory? Would you wait him or her out for days and days to see how hungry he gets before he will eat what is put in front of him and not the food his sensory system tells him he needs?

10. “You are so… [insert amazing, brave, strong, loving, etc. here].”

No, I’m not, but, he is.

11. “I’m sorry.”

Don’t be, I’m not (most days).

12. “Will he always be like that?” 

Will he always have autism? Yes. Will autism always impact his life in some way? Yes. Will he always see the world a little bit differently? Yes. Will he continue to grow, live, love and find joy while teaching me to see his world? Yes. And that’s why we don’t want you to be sorry.

Saying The A Word is hard. Responding to The A Word is hard. Educating yourself about The A Word is not. Thanks for taking the time to do so.

A longer version of this post appeared on The AWEnesty of Autism.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/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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I Know Why 2 Different Groups of Kids Bullied My Son Yesterday

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Yesterday was perfect. I took him to the zoo. We didn’t have one meltdown. He is learning to feed himself. He only bolted while playing on the playground, so all things considered, totally manageable.

He tried to make friends. He interacted with his surroundings. He played appropriately at the sandbox in the dinosaur exhibit. It couldn’t have been more perfect. More beautiful.

We’ve had so few of these issues over the past few years that sometimes I forget, or rather I don’t think about in clear, vibrant ways, that he is disabled.

Yeah, that word so many people don’t like: “disabled.” “Lacking in an ability.” And let me be very clear, My Boy is the shiz. But there are things he can’t do. And I know it. But I also forget quite often what it’s like to stand him next to a group of children and “compare.” And yeah, I think it’s an important thing to do. I need a plan for him. I need to know how far we have come. How far we have left to go. I need to know goals and what works and what doesn’t. I need to see so I know.

I saw him running and flapping and doing his “scarecrow dance” onto the playground shouting, “My friends are all here” and I watched to see if his simple joy was enough to make friends.

boy on slide at playground

I saw him playing along with the 3-years-olds, mostly able to follow their lead. And I watched them gang up to hit and kick him.

Was it his size? That he was so much bigger? Was it that they couldn’t understand his speech or his behaviors?

I saw. But I didn’t know what it was that I saw. And then I saw him leave the toddlers, whose games and dances he understood. I saw him approach the bigger kids his own age.

And I saw them decide to take him out, too. As if his very existence was billboarding him as an outsider. As bully-fodder. As if they could smell him.

Or see a flashing light over his head declaring, “I am different. And vulnerable. Come hurt me.”

And their taunting punches and kicks that landed softly, as if egging him on, were met with his blank, confused, thoughtful stare. He was present in that confusing, awful moment. And then when the ring leader decided to go after him for real, with me running full blast toward them, I saw My Boy punch that Kid-Bully in the jaw.

And when Kid-Bully stood stunned, I saw My Boy side kick him ninja-style in the hip. And down Kid-Bully went. And My Boy stared at him. A blank, thoughtful stare. Hurt. And confused.

And later in the car I answered My Boy’s questions as best I could. No. You are not allowed to hit… Well, Hit first… Yes, if someone hurts you, it is okay to fight back… Yes, you should come get Momma if you can… No, you are not a villain… I know it’s confusing… I’m proud of you for defending yourself.

And I’m heartbroken you had to. Why? Why is a boy who hasn’t mastered potty training and doesn’t know his ABCs having to learn how and when to defend himself? Why!

Why is My Boy, who just wanted to make friends, unable to do so in a setting that should be so natural? Why do I have to hover just to protect him?

I know why. And it has nothing to do with “Autism Awareness.” And it has nothing to do with “Autism Acceptance.” It has nothing to do with special needs or childhood independence. It has to do with them.

The ones standing in line for lunch at the zoo who think it’s okay to roll their eyes at the awkward teen girl who invaded their perceived “space” as she reached past them to grab a pudding.

It has to do with them. The parents standing in line for the zoo train wearing their babies. When their 3-year-old points at my 5.5-year-old and says, “He’s in a baby seat!” And I reply “No, it’s just a stroller.”

And they usher their kid around the corner without correction or apology or even a glance to let me know they didn’t know what to say. Because I know what you probably told him. Not considering the needs of others who will need strollers throughout childhood or adulthood, you told him that he didn’t need to ride in a “baby seat” today. Because trying to foster independence you, unwittingly, I presume, taught him that children with other needs are babies.

It has to do with them. The parents who let their kids mock and bully a child who acts differently and speaks differently. Because “they’ll work it out on their own” is such a solid parenting plan. And you couldn’t care less who gets hurt.

Until your child gets punched and side-kicked by the boy with autism. And then suddenly, in the flurry of emotions I can’t even name and the flailing scenes moving so fast my mind can’t keep up with my eyes, it isn’t about you; it’s about us.

And it’s about the fact that I am us and you are them.

It’s about me realizing that raising your level of awareness isn’t enough. Because there will never be enough autism awareness to make you move over in line so the awkward teenager all alone can grab her pudding without being visibly mocked by adults. There will never be enough autism awareness to teach you that a simple “Would you like to sit with us?” could have taught others to accept and not reject the teen who was different from yours.

There will never be enough autism awareness to teach you that telling your child “a kid in a stroller isn’t a baby, he’s just a kid” would have made all the difference to the mother pushing the stroller. Or to the kid in the stroller who understands more than you think, because his stroller doesn’t inhibit his hearing.

“Autism Awareness” can’t be “Autism Acceptance” until you are willing to be a kind human. Until you are willing to practice “Human Awareness” and someday, if you possibly can, “Human Acceptance.” Even if it’s just to help another mom have less of a hard day. Even if it’s just so you don’t underestimate the strength and the fortitude of that kid with delays as he takes out your son on the playground. Even if it’s just to stop making everything them versus us and you versus me.

Can we start there? Please? So sometime, somewhere, someday the perfect and beautiful day at the zoo will be less of a hard day. For all of us.

A longer version of this post originally appeared on Letters From a Spectrum Mom.

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The Best Way I Can Describe What It's Like to Have Autism

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I haven’t written a post for Autism Awareness Month before. Part of it is because when I was getting my website going, I thought I would only ever write on one subject… basketball. The other part is that, honestly, I still haven’t figured out my stance on the entire thing. How can I write on a topic when I’m not sure how I feel about it?

There are so many different ways I could address Autism Awareness Month. I could talk about how I don’t agree with some groups’ stances. I could talk about what color I think you should wear. I could talk about whether to call me “a person with autism” or “an autistic person.” I could talk about functioning labels or how far the spectrum is supposed to go. But here’s the thing: I’m not sure about most of this.

So instead, I’ll tell you how autism affects me. That’s all I can do. I can’t tell you how autism affects someone else. We are all affected by autism in different ways, whether we are on the spectrum ourselves or not. I don’t know how autism makes you feel. But I can tell you how it makes me feel… or I can try. We’ll see.

My first “official” experience with autism came when I decided to begin spending time in a self-contained classroom at a local elementary school as a junior in high school. I was very comfortable in that classroom, loved the kids and the teachers (still do!), and looked forward to every day that I got to spend with them (still do!). I still love visiting that classroom and spending time with students past and present.

As it would turn out, I had been experiencing autism my entire life. When I was diagnosed with autism, I initially felt very conflicted. Soon thereafter, I felt thankful. Today, I feel happy… mostly.

There are lots of things that make an individual unique. One thing that makes me unique is my job and how I got here. Another thing that makes me unique is that my grandfather was the mayor of my hometown growing up. Autism is just another one of those things that makes me unique.

Autism makes my life loud. That’s the best adjective I have found. Everything is amplified. I don’t mean this only in terms of my sense of hearing, although that is one part of it. I feel loudly. A light touch feels not so light. A bright light feels brighter. A soft buzzing from a light feels thunderous. Instead of happy, I feel overwhelmed. Instead of sad, I feel overwhelmed. The general perception is that autistic people don’t feel empathy. I, along with most individuals on the spectrum, find the reverse is true. You can read more about the Intense World Theory here.

Autism makes my life stressful. When everything is louder, situations tend to be a little more stressful. I’m super easy to sneak up on. I live my life constantly on edge. And sometimes, I fall off the edge and a meltdown occurs. And that’s OK. Well, maybe it isn’t OK. But it has to be. I don’t have a choice. It has to be OK and I have to keep going. I work hard to notice when I see myself trending toward a meltdown, so I can change course. It has taken a lot of work for me to get to this point of self-awareness, but it still doesn’t work all the time.

Autism makes my life organized. Actually, that’s probably the OCD, which is a common comorbidity associated with autism. I do the same thing the same way every time. I count lots of things, notice things that most think are unimportant, and stress over tiny imperfections. I get thoughts stuck in my head, over and over and over again. Phrases, images, memories, patterns. These can all become overwhelming. I use them to my advantage as much as I can. I think this is part of why I am good at my job. And I am very good at my job. I notice the little things, the nuances that others tend to overlook. I find the pattern and I find it quickly.

It’s funny, though, that as much as I notice the little things, I tend to miss the big picture. I’m much more likely to notice that your tag is sticking out of your shirt (which would never happen to me because I hate tags) than notice that you are sad.

There is no doubt that autism makes my life difficult, but it also makes my life beautiful. When everything is more intense, then the everyday, the mundane, the typical, the normal… those things become outstanding. I can’t speak for you or anyone else, on the spectrum or not. Our experiences are all unique. Regardless, I do believe that it is important to find the beautiful. Recognize that there is bad, there is ugly, there is disrespect, there is ignorance and there are meltdowns. Those things are inevitable. But there is also good.

Find your support system and acknowledge them. Find the good and celebrate it. Find the beautiful and treasure it.

Follow this journey on Erinmmckinney.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/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 My Student With Autism Caught Me Crying Over My Divorce

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There are two things I said I’d never do when I graduated: teach junior high and teach special education.

When I graduated my teaching program, Texas was in crisis. Education funding had been cut, districts were laying off teachers and hiring freezes were put in place. To get my foot in the door, I decided to sub.

One day, I got a phone call. Would I mind subbing a classroom of children with autism?

I thought, “Well, you can do anything for a day!” and I agreed. I subbed there for a week, and I fell in love. 

That experience led me to get my special education certification. My first teaching position was another classroom of children with autism. And it was life-changing. These students had already been through three teachers, I was told. These students are elopers, I was told. These students have high behaviors, I was told. These students are yours, I was told.

In the midst of setting up my classroom and learning everything I could about eloping and behavior and structured classrooms, I failed to notice my marriage was falling apart. Two months into my new position, my husband asked me for a divorce.

I was devastated and crying behind my desk. What was I doing here? I can’t teach these kids. I can’t take care of myself. I’ve made a mistake. This is not for me.

My classroom door burst open and running in came one of my most favorite loves. He’d escaped from his assistant (again). I dried my eyes and turned around to greet him. Before I could grab his hand and lead him back to where he was meant to go, he stopped.

SchoolPic1

He cocked his head to the right, he cocked his head to the left. He reached up and held my head in both of his hands. He smiled. An ear-to-ear smile. He slightly touched his head to mine. He held his head there until I looked at him. He bumped his forehead against mine again and smiled. I smiled back. He bumped forehead with me once more and went off with his assistant.

It was a life-changing moment. 

A wordless, life-changing moment. One I will never forget. In that look, he made my heart hurt less, he made me realize people needed me, he made me realize I was doing what I was supposed to be doing all along, he made me realize I was going to be fine.

I’ve since moved to another district and now teach in a middle school classroom of kids with autism.

And every single day I think of that wordless moment that made me realize I was worthy.

When desks are flying at me, I am worthy.

When routines and schedules get changed and I’m in the middle of using visuals to talk a student through a meltdown, I am worthy.

When I’m getting bit, hit, and kicked, I am worthy.

And you know what? So are they. 

Whatever my students learn from me, I hope the lesson that stays is one it took a third grader with autism to teach me — you are worthy.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. 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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