A Letter to Five Guys, From the Mom of a Teenager With Autism

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If you live in our community and catch a sight of us in public, you will see a young man hopping through the store, a cool looking device sitting in the shopping cart and a woman telling “hoppy” to come along. Some people stare. Some people smile. Some people are pretending not to stare.

It’s OK, really. He’s happy and I’m happy and that’s all the matters. We generally go through the stores without conversation with anyone else and that’s just fine with me. We do tend to live in just the space between us, where I understand him and he understands me.

Except there is one place in the community where Kreed’s hopping, dimple grin and sounds are a welcome sight, and people greet him with cheers and shout his name and immediately start his order — often times before I even open the door. Reminds me a little of Kreed’s very own Cheers place.

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Five Guys is Kreed’s favorite burger place on Earth. Literally. Ask Kreed where and what he wants to eat and it will be Five Guys every time. While their fries are delicious and burgers large and yummy, I know it has just as much to do with the people as the food. Kreed is accepted there without question. They aren’t staring at him but celebrating his uniqueness and love him for it. It’s a place where they actually talk to him and wait for him to respond on his device. They will give him all the time in the world to let him order even if it takes a few tries. They are careful to speak directly to Kreed and not look to me to translate. If Kreed gives them money, they give him back the change.

They are some of the most wonderful group of people, and they don’t even know it. It’s wonderful to have Kreed go somewhere and not be treated different, except maybe with more kindness and grace than he has ever experienced before.

Kreed is different and despite being an incredibly handsome (I’m not biased, I swear) young man of 17, it’s apparent he’s different within seconds from his hopping, to using his communication device. Most people expect me to answer for him or repeat their question to him and most just stare even if they try not to. On some level I know Kreed is aware of this by how he treats people. He knows when he is not cared about or treated as the same — so in turn, he will pretty much ignore you completely. In public we are in or own space, and he talks to me as if I am the only one that exists. When he walks into Five Guys, it’s like the greatest experience of his life.

For that, I will be forever grateful to Shane, Drew, Dolores, Joe (who tries to act like a tough guy instead of the teddy bear that he is), Max and Sara.

boy with five guys staff

They have enriched Kreed’s life more than they will ever realize. Thank you for respecting him and liking him and making sure each time he walks into Five Guys, that it’s an experience full of love for him.

People don’t often realize the impact they can make on someone’s life. For Kreed, they have made him into a Five Guys fan for life and we frequent the restaurant at least 4-5 times a week. They’ve helped him learn skills he had been unwilling to do before. And they’ve given him something he gets nowhere else — for this boy to feel such love from virtual strangers merely by being himself.

To those that love Kreed and live with him every day, that kind of impact is immeasurable. They have opened up his world in a social way that had not been possible before. He became interested in money so that he could go to Five Guys more, which in turn led to him learning to do chores around the house to earn such money.

He learned to use a huge part of his AAC device by going to Five Guys — he learned to ask for the food he wanted, to ask for “more water or fries or peanuts” when he ran out, and to tell me his feelings while he was there (happy and excited). I can’t begin to tell you the amount of language Kreed has learned because of the people at Five Guys.

We have visited numerous Five Guys over the years now, but none like the crew that is currently at the Dana Park location in Mesa, Arizona. I owe them a lifetime of gratitude for how kind they have been to Kreed. Kreed has also been going to the Flagstaff location as we transition to move there and many of the staff has gotten to know Kreed as well and are equally as kind.

But the staff at Dana Park truly love seeing Kreed and look forward to his visits. For Kreed to feel that kind of love from a place is amazing, and I will never ever forget the way they have touched Kreed’s life in this moment of time.

In a world where we hear about bullies and violence… there are still corners of this world where kindness rules. To the staff at the Dana Park Five Guys, you all have my love and respect and thanks for being such a bright light in Kreed’s World.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

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When I Realized the Grocery Store Bagger Has Autism

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A man about 25 years old works at our local supermarket. Let’s call him “Sam.”

Sam works as a bagger and general helper at the supermarket. He’s a large young man — would have made a good linebacker in high school. Sam is one of the hardest workers at the store. Some of us understand Sam, and some do not. Some stare and crunch up their faces with a questionable look. Sam has autism.

On any given day you will find Sam at the end of the checkout lane conversing with himself. He has a vast knowledge of sports teams, remembering the dates of games, the score and the upcoming schedules of each team. He has a habit of smacking his hands together with such force that the sound resonates through the supermarket. I often wondered if this was a coping skill taught to him to use when he gets nervous or if it was a replacement given to him for a more offensive behavior. Or maybe for him, it’s a sensory issue.

One day as he was bagging I said, “So, Sam, how are you doing today?” He immediately put down the item he was bagging and walked away. Oh my God, I thought to myself, you scared him and he had to walk away to avoid reacting negatively to it. Then the cashier told me, ” He won’t touch pickles… If you buy a jar of pickles he won’t bag it.”

I breathed an autism mom sigh of relief. I was having an I-should-have-known-better moment there for a bit.

Sam will talk with anyone. Usually you can hear him spotting folks he knows in the market. He’ll call from two aisles over, “Hello, Mrs. Brandy Miller. How are you today?” “Mrs. Brandy Miller, are you still working at the bank?” “Nice to see you, Mrs. Brandy Miller, OK, talk to you soon.” The problem is, as I noticed today, sometimes the person to whom the greeting is directed, fails to respond. I find this sad.

Today, as I entered the checkout line, Sam was in a different position from his usual end-of-the-checkout bagger spot. Sam was a customer. “Sam,” I called, “are you doing your own shopping today?” “Yes, I am, how are you today, thank you, I’m doing very well,” he replied. He had a decent size cart of groceries.

My curiosity aroused.

As he had his groceries rung up, he conversed with the girl running the register. “Ashley, do you work tomorrow? I work 10 to 2, Ashely. Do you work tomorrow, Ashley? Ashley, I’ll see you tomorrow when I work 10 to 2. Ashley, what hours do you work tomorrow?”

I wondered if he was actually shopping or doing a practice run. I perused the groceries he’d selected. Many juice boxes, a jug of lemonade, ice tea, a bottle of vitamin water, a link of some type of smoked sausage, two or three Lean Cuisine-type dinners. And two Sunday newspapers. He bagged it all himself in the reusable, keep-it-green type of plastic shopping bags the store sells. The total: $133.

“I’m going to pay for my order in a minute, Ashley. Ashley, I will pay for my order in a minute.” He fished his debit card from his wallet. “I’m gonna pay for my order, Ashley.” His gaze changed to the computer screen that shows the total as the register records it. “Ashley, how much was that newspaper? It should be $1.75. The Carlisle paper is $2.00 and the Harrisburg paper is $1.75.” The cashier was confused.

“There are two newspapers there,” I pointed out to her. Sam knew the prices of both and noticed that the register had only rung up the one on the bottom as the cashier slid them over the scanner, since one was on top of the other. “I’m gonna pay for my order now, Ashley.” He slid his debit card through the machine, entered his code and announced, “I’m gonna go put these in the car now, Ashley. I will see you when I work 10 to 2 tomorrow, I will see you. When you are working tomorrow, Ashley? Have a nice day, Ashley, OK, bye, bye.”

And he departed.

I wanted to grab the lady behind me in line and shake her, saying, “Did you see what Sam just did? He bought his own groceries and paid for them correctly. He has a job, he earns his own money, and he came in here unescorted and did his own shopping. Do you understand what a great accomplishment that is?”

But of course I could not. It would take me hours to explain to the average person not aware of autism, how much work, bravery and fortitude it took for this young man to get to this point in his life. My frozen foods would melt in the time it would take me to explain that a grocery store full of crying babies, loudspeaker announcements, crowded aisles and a sea of colors can be a nightmare for our family members on the spectrum. So, I smiled to myself for his achievement and paid for my own order.

As I exited the store, the idea crossed my mind that I would love to be able to speak with his parents. I would love to ask them how they managed to teach him all they had that got him to this level of independence. I scanned the parking lot hoping that perhaps he was still loading groceries into the car. I swore to myself I would approach them and congratulate them and Sam for his job well done. But alas, he was gone.

Every time I see Sam at work at the market, I’m reminded that I too have a son with autism. I wonder, can I teach him what he will need to know to at least reach this level of self sufficiency?

I suppose it will be one day at a time — one jar of pickles at a time.

This post originally appeared on Joey’s Ma.

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Why I Hate Functioning Labels

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I am an adult with autism, raising a son with autism.

And I hate functioning labels.

I do. I despise them. I don’t care for labels at all, but as an autism parent, I do understand how these labels get our kiddos the help they need.

But really… functioning labels are the worst. They’re designed to show where our children are on the spectrum, but they’re actually limiting our kids.

Here’s an example.

My son, Liam, has been diagnosed by four doctors as having autism — as well as bipolar disorder and many other things. (He has a full plate.) Two doctors said he’s high-functioning. The other two said he was moderate.

Why two different functioning labels? Let me tell you. Liam’s IQ is 120.  He tests gifted in math and vocabulary. But his reading comprehension is bad. He can read to me, but he can’t tell me what he just read. He’s considered “learning disabled” in that area. Even though he spoke early, his speech was so hard to decipher that it was considered a speech delay.

So it would seem that based on his IQ and some of his test scores, he’s high-functioning. But, based on his disabilities and behaviors, he’s moderate.

Liam has also learned to pass. For those of you not familiar with the term, “passing,” it’s when a person with autism is able to pass as “normal.” There are some days where Liam can play with his peers or be in a public setting, and no one would know he’s on the spectrum. But before long, passing becomes too much work, and a meltdown ensues. There are also days where he doesn’t even try to pass. It seems at 8 years old, he’s realized that, around the people who accept him most, there’s no need to pass.

So you see, Liam is literally all over that spectrum. He doesn’t fall into one convenient slot. And the more parents I’ve spoken to, the more I’ve learned that Liam isn’t alone. So why do doctors and therapists insist on using these functioning labels?

Autism isn’t a competition.

I don’t care where you or your child fall on the spectrum. My child doesn’t care where you or your child fall on the spectrum. People are different. Autism is different. Not one of us is the same.

So in my world, there are no labels. Last year I was told I was on the spectrum. The term she used was “high-functioning.” No. I don’t consider myself high-functioning. I’m simply on the spectrum. Where I am on the spectrum depends on the day. My mood. The situation.

Basically, my autism is my autism. Liam’s autism is his autism. And your autism is your autism.

This post originally appeared on My Life With My AuSome Son.

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Autism Haunts My House 365 Days a Year. And I'm OK With That.

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I hear footsteps, crashes, doors opening and closing, voices and strange noises on a regular basis. I’m often jolted from my sleep in a panic. I’m unable to locate objects or find that they have been moved. I often find things inexplicably broken.

Yes, my house is haunted – it has been for years.

In the movies, we often find ourselves wondering why the families do not move out of their haunted houses. Why do they subject themselves to the stress and anxiety of living with ghosts? Who would want to live in fear, waiting for the next haunting to occur, always on edge and unable to fully relax in their own homes? Why do they stay?

For me, the answer is simple. Moving would be pointless, there is no eluding the ghosts. They haunt me wherever I am. Even in solitude, there is no reprieve, for I know the phone can ring at any moment. A single call can rip me from a seemly normal routine and turn my day upside down.

Several years ago, I used that analogy to describe to a friend what it is like living with autism. I’ve never been able to come up with a more accurate description of my home life. I live with a heightened sense of awareness, constantly monitoring my environment for unexplained or unwanted noises and even silence. For I know from experience that any of those things could mean disaster. The unexpected is expected – it’s only a matter of time.

Among other thing, over the years, those unexpected sounds have included broken lamps, a TV being pulled off the stand, leather furniture being punctured with a candlestick, broken glass on a fireplace, the pool cleaning brush breaking out the screens of the pool enclosure, a stuffed animal being sucked into the pool pump system and a $12,000 flood.

If you’re the parent of a child with autism, you know exactly what I am writing about. Being jolted from our normal lives is our normal life. We are constantly on edge and alert. Even sleep, when we get it, brings little relief. Being jolted in the middle of the night is a common occurrence.

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My favorite ghostbuster.

It’s not surprising to learn that many parents suffer from depression, anxiety attacks and even post traumatic stress disorder (PTSD). We never fully turn off from our commitment and responsibilities. We’re on call 24 hours a day, seven days a week, 365 days a year, and it never ends.

While I’m “haunted” less frequently now that Mike is older, I’m no longer “living with the ghosts.” Simply put, we cohabit. I’m unaffected and unfazed by situations that would cause most people to run for the door. For me, accepting cohabitation was the only way I could gain control and achieve happiness. It was a choice to let go of being irritated by the accommodations one must make to live in a haunted house. By making that choice, I’ve been able to find my happiness within his happiness, even when it inconveniences and/or annoys me.

I’ve accepted that my house will always be haunted. I’ve been able to exercise the most annoying ghosts and even enjoy some of them. Thankfully, for now, the ghosts have not been as startling, but who knows what tomorrow might bring? See that is the thing about living in a haunted house – you never know what will jump out to get you next.

This post originally appeared on Autism Hippie.

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This 2-Minute Film May Help You Understand the Mind of a Child With Autism

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The world of a child with nonverbal autism is one that no one but that child can fully understand. However, these two filmmakers have made an attempt to offer the world a small glimpse into what life might be like for children on the spectrum.

Marisabel Fernandez and Alexander Bernard created a short film called “Listen” for their Ringling College of Art and Design senior thesis, according to their Vimeo description. The film delves into the mind of a girl with nonverbal autism using shapes, colors and sounds to try to articulate feelings of sensory overload and misunderstanding.

“Our wish with this piece is to give a glimpse into the lives of children living with autism,” the description on Vimeo reads, “and, in any way we can, to inspire positive change through a deeper tolerance and understanding.”

The filmmakers also qualify that, as autism is a wide spectrum with complex and different experiences across it, “Listen” is just their interpretation inspired by research and time spent within the autism community.

Recently, the two-minute-long film won Fernandez and Bernard the Grand Prize in the 2014 Adobe Design Achievement Awards, according to PR Web.

Watch the short film “Listen” above.

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Living With Autism: Why I Hate Talking on the Phone

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It’s not an exaggeration to say that hearing my phone ring fills me with an overwhelming cocktail of dread, fear and panic.

Calling someone is a million times worse. In fact, most of the time I physically can’t do it. It’s as if the phone is encased inside a solid brick wall, and there are very few situations in which I’m able to break through. I’m not even entirely certain I could do it in an emergency. I know I would definitely rather go hungry than phone for a pizza.

The reasons for this reaction are complex. Lots of autistic people find using the phone unpleasant, but most of the solutions I’ve read focus on the social complexities and anxiety of initiating conversations with people you don’t know. And while there’s certainly an element of that in my discomfort, I don’t think it’s the whole story. At least for me it’s just not that simple — I hate using the phone with everyone, including people I know really well.

From chatting with other autistic people it seems that I’m not alone in that. There’s obviously a lot more going on than just social difficulties, and the solution is more complex than just making people practice. So I thought it might be useful to explain some of the other reasons why I find the phone so difficult and even painful to use.

There’s too much attention.

Without the discomfort of eye contact, you might expect that speaking over the phone would feel much more relaxing than doing so in person, right? But it feels just as overwhelming for me and leaves me feeling perhaps even more vulnerable.

And that’s because on the phone I feel trapped — someone wants something from me and there is nowhere to hide. Their full attention is directed my way, as if there’s a big fat spotlight shining directly at my head. This focus can be extremely exhausting, and I can only keep it up for short periods at a time.

It’s sudden, unexpected and unpredictable.

A ringing phone feels like an invasion, as if someone has just stepped into my house without warning. I don’t know who it is or what they want from me, and at that moment, the not knowing is unbearable. Thinking that my phone could suddenly start ringing at any moment is stressful for me, like a random social connection without any preamble or context.

When I’m making a call and waiting for someone to answer, listening to the ringing phone is like turning the handle and waiting for the jack-in-the-box to burst out. Not knowing whether or when someone will pick up is just really nerve-wracking… and there are only two options, each as awful as the other: someone will pick up or it will go to voicemail.

Voicemail is the worst. Talking to nobody feels so uncomfortable that I can almost never bring myself to do it, but I know that if I don’t leave a message I’ll have to go through it all again… argh! The pressure to decide before the beep freaks me out, and I almost always hang up.

It requires language processing without visuals.

Visual input helps me to process auditory input. When someone’s talking to me in person, I read their lips to get the added context and anchor the sounds so that I can interpret them. Without that visual I get lost in the rhythm and cadence of the isolated voice. The tones are translated in my mind not as words, but as waves of color that rise and fall and loop and bend… so focusing on spoken words without a corresponding visual is very, very hard work for me.

It relies on verbal communication.

Words are the focus of a phone conversation. They come with so much pressure to respond, and it’s always verbal. When you’re face-to-face you can at least nod or smile to show that you’re paying attention, or use other non-verbal stuff to cover the gaps when your auditory processing is lagging or you’re finding it hard to access language. On the phone any silence is incredibly noticeable and really, really uncomfortable.

And I can’t wave my hands around for emphasis like I usually do, so I have to use exaggerated tone and inflection to make the same point. There’s also the need to speak clearly, and both of these things require a great deal of effort.

I’m also a chronic interrupter. I’ve worked really hard over the years to try and stop myself from talking all over other people, with only limited success. I’m constantly misjudging when it’s my turn to speak, and on the phone it’s even harder for me to figure that out. Reading emotions is also a thousand times harder over the phone, when most of the evidence and context are obscured. So it feels like there are just a lot more opportunities for misunderstandings.

It feels unnatural.

Without the visual presence of the person I’m talking to the phone can often feel like talking to a machine or out loud to myself, which is just… weird. So the whole thing has a quality of play acting about it that feels super uncomfortable to me.

Sensory issues.

Last but certainly not least, it physically hurts to hold the phone next to my ear. Keeping my hands still when I talk is a challenge, and the sensory onslaught of the sound directed right into my ear canal at varying volumes and inconsistent rate can be overwhelming after only a few minutes.

All of these reasons just seem to add up to an overall feeling of my body screaming at me that something isn’t right, which makes it hard to break through that invisible wall that seems to encase my phone.

Things that help:

There are a few situations in which I can use the phone with a lot less stress. One of them is calling to make an appointment of some kind, probably because I know in advance exactly how it’s going to go and what’s expected of me. There’s a script I can follow and things happen in a predictable way, and that takes the pressure off.

It’s the same with any call that’s a simple exchange of information – can you tell me what time you close, do you sell Apple products, here’s my credit card number – that kind of thing.

Obviously I vastly prefer to communicate via texts or email, so I use these wherever possible. If I can’t do that, then it helps if people text me to let me know that they’re about to call. It also helps me to let calls go through to voicemail. That way I know who it is and what they want before we start talking, and I have time to get my thoughts together. There’s also a chance I might not have to call them back or can reply via text or email.

None of these things make using the phone easier, they just make it slightly less sucky. For the most part I will do whatever I can to avoid making a call – that means if you don’t text me or have an email address then I’m probably not going to contact you, at least not until I absolutely have to!

So that’s the story with me and the phone. I leave you now with the profound albeit paraphrased words of Carly Rae Jepsen.

Hey, I just met you
and this is crazy,
but here’s my number
and I would really appreciate it if you never used it.
Unless you’re texting.
Just don’t call me.
Like, ever.
Thanks.

This post originally appeared on Snagglebox.

 

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