‘One of Many’ Truck Helps Drive Autism Awareness

Autism Truck "One of Many"

If you were in Wildwood, Florida, this past weekend for 75 Chrome Shop’s annual truck show, you wouldn’t have been able to miss this Ausome® “One of Many” truck. One of our readers sent us the video below, which clearly shows the truck’s many custom-built items depicting the popular Autism puzzle pieces. This beautiful big rig has been spreading Autism Awareness every time it hits the road.

The truck is the brainchild of Mike Manuel of Michael A. Manuel Trucking in Front Royal, Virginia. Mike enjoys building show trucks, and this, his fourth one, was inspired by his daughter, Kara. The idea of a truck dedicated to autism awareness came to Mike a few years ago, and he began talking to companies and gathering sponsorships while attending various shows.

When the truck was ready to be built, Manuel Trucking still had sponsorships available and Brandon Key of Rush Peterbilt, jumped onboard. His daughter, Maggie, also has autism, and he and Mike shared stories about their daughters as the truck was taking shape. The names of both girls are on the truck, along with the various logos and names of the people and businesses that helped make the truck become a reality.

While there is no set schedule for the One of Many truck, it did make a recent visit to a middle school in Winchester, Virginia, where 20 of the students are on the autism spectrum. It also appeared in the parade around Bristol Speedway before the Fitzgerald Glider Kits 300 race on April 16. The next big show you can see the truck is at Fitzgerald Glider Kits in Crossville, Tennessee, in July.

A Manuel Trucking company representative was careful to stress that they and the truck weren’t “affiliated with any one charity foundation.” Instead, they “want to be able to bring it or show it wherever to help out any and all charities donating to the [autism] cause.”

Honk if you’re a fan. We know we are.

‘Quiet Hour’ to Benefit Shoppers With Special Needs

ASDA Living

A store manager in the U.K. recently decided to roll out a “quiet hour” at his ASDA Living store to benefit people with autism and other special needs. Simon Lea was moved to implement this new concept after witnessing a boy having what appeared to be a tantrum in the store a few weeks ago. Simon said the child was screaming and kicking and carrying on loudly, and the child’s mom, who looked “drained,” told him that her son has autism and was having a meltdown. Simon, who has two kids of his own, gave the boy a toy football to play with, which helped calm him down and enabled his mom to finish shopping.

Afterward, Simon was still considering the situation and wondering what he could do to help out customers with special needs. He talked to an employee who has a child with autism and to customers themselves, and came up with the idea of the quiet hour–a time when the escalators stop running and both the TV displays and the in-store music will be silenced. Additionally, there will be no use of the store-wide announcement system. Although the store may still have colorful displays of products, the overwhelming sounds will no longer be an issue during that one hour.

Simon is especially empathetic because he suffered from anxiety for years. “I used to absolutely hate going into busy stores,” he explained to the Manchester Evening News. Furthermore, he’s learned to judge less, saying, “Six months ago I would have said ‘control your child’ even though I’ve got children. But speaking to people with autism and disabled people has helped me think about how I can make it a better place to shop.”

The first quiet hour will be held on Saturday, May 7, at 8 a.m. The ASDA Living store is located in Cheetham Hill, Manchester.

These Are the Moments

These Are The Moments

Running around this morning, I was trying to get myself ready for work, and my kids ready for school. Mia wasn’t getting up and, after calling down to her multiple times, I knew I was going to have to go down and get her out of bed myself. Before I even made it to her room, I could feel my frustration level rising.

It was nothing she had done; it was just one of those days.

And, while I normally have the patience to handle what I knew to be coming, today I felt tapped out. On top of having ADHD and Autism, my daughter has ODD (Oppositional Defiant Disorder). For those of you who have a child with ODD, you know that it’s a real treat. You almost can’t understand the apparent absurdity of it until you’ve witnessed it firsthand.

I‘ve come to realize that every morning my daughter’s first words will be “No,” or some semblance of that. All mornings start the same:

“Good morning sunshine! Ready to get up? ” No.

“Time to get up babe, Breakfast is ready.” No it isn’t.

“Hey Mia, look out your window! It snowed last night!” No it didn’t.

“What a nice day! You’re going to have fun playing outside!” No I won’t.

“Let’s get up and get ready! You have swimming lessons tonight!” No I don’t.

And on, and on, and on.

When my husband takes his turn and I hear him say, “Alright, let’s go. Time to get up!” I catch myself in the next room thinking, “No it isn’t.” I know it’s not her fault. She can’t control this. She has barely opened her eyes or woken out of sleep, and regardless of the circumstance, it’s her first response. Understanding that this is part of her genetic makeup (Who wants to say no all the time?), this part of my morning usually gives me perspective, a dose of patience, and a sense of protectiveness, and acts as an early-morning reminder of what this little girl has to deal with.

As predicted, we went through the same song and dance this morning. She said no, I lifted her little 8-year-old self out of bed, she put up a fuss, and then eventually we started the school morning routine. Only this morning I didn’t feel that patience; I couldn’t find the perspective. I felt frustrated. Please God, just one school morning. Why can’t she just get up and be happy? As someone who doesn’t hide their emotions well—a blessing and a curse if you ask my husband—I stayed quiet. I have learned that there’s no point in getting upset. I bit my tongue, said my silent prayers (pleas), and started through the motions of the morning.

Today, because she decided that she was going to wear a dress that she can’t get into without assistance, I was quietly kneeling down in front of her, doing up the buttons on the front of her dress when I felt it. Two little arms wrap around me, followed by a kiss on my neck. As affectionate as Mia can be, she has never kissed me on the neck. In that moment, processing all at once how much I love her, how sweet her intentions were, how extremely innocent she is, and fighting the guilt I had for being frustrated—she told me she loved me, thanked me for helping her get ready, and hugged me again. With that, she skipped out of the room, ready to start her day.

These are the moments: the moments that make the hardest of days manageable, the moments that make me so thankful that Mia is my daughter and that I’m the one that God chose to deal with all of the perceived absurdity and to help her navigate the challenges that are yet to come. These are the moments where what I stress about is put into perspective and I stop to appreciate the true joys that come with raising a child with special needs. It’s not always a kiss. It’s when she says she’s sorry for something that I know she can’t help, when she runs to me after school as if she hasn’t seen me in ages, when she looks at me desperately during a basketball tryout because she hadn’t realized there was so much running involved, and yes—sometimes it’s when I get a kiss on the neck, at that very same moment when I’m feeling like I’m not enough.

I don’t know what tomorrow holds, but as for today… I’m thankful for the moments—every single one of them.

Baseball Game Hits a Home Run for Autism Awareness

We asked Awenesty of Autism blog writer Kate Hooven to write an introduction for this local news video showcasing a local baseball game that she organized for Autism Awareness Day. It was a memorable day for her as, besides spreading awareness, she also got to watch both of her sons participating.

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Ever since he can remember, Ryan was dragged from ball field to ball field to attend his big brother Kyle’s baseball games. For a kid who’s not a fan of bugs, heat, wind, rain or cold, he endured a lot to support his big brother. During many games, Ryan sat in the car because it was too cold, too windy, too bright, too hot or too buggy, but when Kyle would step up to the plate, Ryan’s voice would carry across the baseball diamond as he popped his head out of the van’s sun roof and cheered for his brother. Ryan has always been Kyle’s No. 1 fan.

To have the tables turn on a cool, windy spring day, and hear Kyle’s voice drift across the infield cheering on Ryan, was a beautiful turn of events. It was the CV Eagles first-ever Autism Awareness Baseball Game and Kyle was crouched down behind home plate waiting for his little brother Ryan to step up on the mound and throw out the ceremonial first pitch. From where I stood along the first-base line, I could see Kyle’s smile, his pride and his admiration for his little brother— Kyle has never seen him as his autistic brother, only as his brother.

On that cold, windy day, Ryan said happily, “I felt like I had fans for the first time ever today.” Little does Ryan know that, although there were many fans over the years sitting in the stands, cheering on his big brother as Kyle made diving catches, turned two and ripped the ball down the left-field line, Ryan has always had a fan on and off the ball field who cheers for him louder than anyone.

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Kate and her family have lived in Mechanicsburg, PA, for the past 20 years. When Kate is not busy advocating “different, not less,” she enjoys reading, binging on Netflix and spending time with her family and friends.

Kate HoovenIn addition to her advocacy service and her blog, Kate is also a Justice System Consultant for PA’s ASERT (Autism Services, Education, Resources and Training) Collaborative. With her prior experience working in PA’s Juvenile Justice System and her passion for advocating for children and adults living with autism, Kate enjoys her time training probation officers, police officers, attorneys, judges, correctional officers and others employed in the justice system in order to raise awareness of the impact an autism diagnosis has on those that become involved in our juvenile and criminal justice systems.

Kate hopes that, through her writing, she is sharing a real, raw and AWEnest look at how autism impacts her family, and in doing so, she may help other parents recognize that they are not alone on this autism journey. Her stories and photos are shared with permission from her incredibly AWEsome son, Ryan, who also wants people to believe that even though he is “different,” he is not ever “less.”

To read more from Kate, follow her on Facebook or visit The AWEnesty of Autism website today.

I’m Not Naughty, I’m Autistic

In an effort to spread more understanding about autism, The National Autistic Society made this short, 85-second video of an outing at a shopping mall from the viewpoint of a boy with autism. In it, we get to experience the overwhelming sensory chaos that assaults him during what is, for most people, an enjoyable trip out.

“For autistic people, the world can be a really terrifying place. And for their families, the looks and stares make it a really lonely one too,” said Mark Lever, CEO of the National Autistic Society.

“We wanted people to see the looks and stares that Alexander and his mom get on a shopping trip, and then perhaps ask themselves have they done that before in that particular situation. Maybe after having seen the film they might react differently in the future and, in doing so, they really will have made a world of difference.”

Watch for yourself.

What People With Autism Want You To Know

Everyone Has to Have a Voice

Apple’s recent videos profiling Dillan, a non-verbal teenager with autism, are just beautiful. Too often people assume that those who don’t talk also don’t think, even though speech and mind function are rarely tied to one another. As most of us know, and the rest of the world needs to be shown, just because somebody can’t communicate doesn’t mean they don’t feel or love. And Dillan proves this when he receives the computer that finally helps him open his world’s locked door.

In the first video, he explains how he experiences the world in a unique way–with his senses heightened and more intense than those of most other people—and feels emotions from those he loves.

The ability to finally have a voice gives him more control, by helping him hold onto his thoughts. It means he can finally say what he thinks, and let the people who love him know that he loves them too. Having a voice means no more isolation.

In the second video, Dillan’s mom and his therapist/communication partner discuss how the biggest challenge used to be not knowing what Dillan was thinking or feeling. We all know the value that our society puts on eye contact, with the preconceived notion that those who don’t look you in the eye when you speak aren’t listening and/or understanding you. This belief is ingrained in us since we’re young, and is one of our cultural norms that we need to change.

So many assumptions that we know aren’t true need to be shown as the falsehoods they are. Non-verbal does not mean non-intelligent. As Dillan’s mom puts so succinctly, “Not being able to speak isn’t the same as not having something to say.”

As for Dillan, he can finally show people the person he truly is inside, and not just the person they might see and not understand. Best explained by Dillan, himself, “People need a voice, not only so they’re heard, but so they’re understood and known.”

On The First Anniversary Of Our Autism Diagnosis

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To the parents anxiously awaiting that first doctors appointment. Hoping, wishing, and praying that all those “idiosyncrsies” you see in your precious child, are just that, eccentric quirks. You’re longing to hear that everything will be fine – that it’s all in your head. That you’re just being overprotective, over reacting or jumping to conclusions.

I was you 365 days ago.

One year ago I sat in that sterile, white neurologists office regurgitating information about my son while he threw blocks, cars, and anything else he could get his hands on in the corner of the room.

One year ago I was told that my life was essentially over – while attempting to keep my composure, words I never thought would describe my life as a brand new mother were thrown my way – autism spectrum disorder, lifelong care, endless therapy, and thousands of dollars out of pocket. I sat there, attempting to take it all in – to absorb everything as I listened to a man who had just met my sweet son and I try and tell me that my son may never live alone and I may go broke attempting to care for him.

But today, today I’m drinking a glass of wine (or five) and skipping my evening workout. I’m going to sit in front of my TV and binge watch Chuggington on Netflix while I hold my precious little boy at my side.

Because we’ve survived.

We’ve survived one whole year of autism in our life.

If you would have asked me a year ago, I’m not sure I ever thought we would make it to the one year mark unscathed.

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To you newly diagnosed parents, I know it might seem like theres a dark cloud following you around and although this is new territory you’re venturing into, if theres any advice I wish I received at the beginning of our diagnosis, it would be…

Don’t google.

Google is NOT your friend. I repeat, Google is NOT your friend! The day my precious baby was diagnosed with autism, I immediately went home, locked myself away in my bedroom and googled. A plethora of information, most scary and worst case scenarios came up in my searches. It was information overload.

It’s okay to feel grief.

One of the hardest things about this autism journey is getting past the grief you feel and the expectations you previously held for your child’s future. It’s perfectly normal to feel a twinge of sadness as you see other children your child’s age jumping through hoops in terms of milestones, while your child is seemingly getting left behind. It’s okay to cry, it’s okay to take time for yourself. It’s okay if you don’t know what to do yet. It’s okay to search for what works best for your family.  It’s okay to scream and lock yourself away for a little bit, because sometimes that is the only place where you can find solace, as long as you realize when it’s time to brush yourself off, get up and be an advocate for your child.

Not everyone you meet will be kind.

Not everyone you meet will be sympathetic. Not everyone you meet will understand the struggle of raising a limited verbal child. Not everyone will understand how hard it is to go out in public and not have an anxiety attack or cry an ocean of tears, right along with your child when they’re arching their back, hitting themselves compulsively in the face, and throwing everything off the grocery store shelves. When they struggle, you struggle. When they hurt, you hurt. When they feel overwhelmed with the world, you can’t help but feel the same. You wish more than anything that the world would just understand your child. The stares. The whispers. The unkind words. The looks of disgust. Try not to let them hurt you too much, although easier said than done. Not everyone knows, understands, or cares about your battle. Allow those unkind and challenging instances to give autism a voice and to educate those around you.

Everyone will all of a sudden become “autism experts.”

Many times when people think of autism, they immediately think of Rainman. Remember, every child with autism is unique. Post diagnosis, the floodgates of advice will open. Most mean well, but some don’t. You will be told that your child “looks normal”, you’ll be asked “if you’re sure.” You will most likely get the spiel that vaccinating your child caused it – or that if you would just give them this or that, your child will be cured. Your child will be compared to your uncles, brothers, sisters, cousins, friend with autism. Your journey may be vastly different from those around you. What worked for one person, may not work for someone else. Oh yeah, and Jenny McCarthy is not God.

Find your tribe.

You can’t do this journey alone. It’s just not possible. When the world feels like it’s spinning and you aren’t able to stand still, your tribe will be there to keep you grounded. They will understand the struggles, the meltdowns, the anger and grief, the feeling of being alone. Find them. Love them. Cry with them. Thank them for being so freaking awesome in your life. Seek out any and every avenue to meet others faced with the same journey.

Don’t discount those little milestones.

For us special needs parents, it’s the little milestones that many neurotypical parents take for granted that mean the most to us. I remember the joy I felt the first time my son looked at me when I called his name. Or the time he used sign language correctly, after 8 months of practice, to communicate his need of wanting more juice. I think we both jumped up and down like crazy people the day he pointed to the fridge and attempted to say the word “apple” – meaning he wanted applesauce. You will never take those seemingly small moments for granted – and you will feel on top of the world, each and every time they occur. So many times your child will surprise you and exceed and surpass your expectations.

I know it might seem as though you have a huge mountain to climb – and you’re afraid because you can’t see what’s on the other side, but I’m here to tell you that things WILL be okay. I was YOU one short year ago. I remember being devastated and terrified of this new life I was forced to live.

I won’t tell you that it’s been easy – there have been more days than I care to admit that I would want nothing more than to crawl into a hole and hide away from the world. There are more days than I care to admit that I wish and pray autism away. There are more days than I care to admit the defeat I feel for my child when I see how long it takes him to master a skill. There are more days than I care to admit where I feel sadness thinking of the struggles my child will face later in life. There are more days than I care to admit where I wish I could understand that little boy’s world. There are more days than I care to admit where I wish self-injurious behaviors, anger, anxiety, and aggression didn’t rule our life every second of every day.

Raising a child with special needs can be a tough pill to swallow. It alters your perspective on parenting and transforms you as a mother, whether you want it to or not. The days seemingly become longer and longer, and patience starts to run thinner and thinner. One year ago my world came crashing down around my feet.

But, over the past 12 months, we have been able to pick up those broken and shattered pieces of our life. We have been able to find some amazing therapy and a place that feels like home. A place that has allowed my child to thrive and progress, more than we ever imagined possible. We have pulled strength, courage, and determination from places we never knew or even realized exisisted, ESPECIALLY on those days where the weight of the world seems and feels like a never ending struggle. We have immersed ourselves in autism groups and become advocates for a child that doesn’t yet have a voice. But, don’t let that fool you, because even without words, this little boy is sharing his love of life with the world.

I feel hopeful and confident about our future. We have prevailed. We have overcome an abundant amount of roadblocks, many that I never imagined we would be able to maneuver through. I may not have all the answers yet and there may be more twists and turns on this adventure than I would like, but I realize our life isn’t over and that autism doesn’t mean a death sentence. That this is just the beginning of our new and beautiful life.

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This Ausome™ article was originally published on Caitlin Cavallaro’s blog, “Life Through a Different Lens” and republished with permission. Please visit Caitlin’s website or like her Facebook page for more great words.

Unless You Walk a Mile…

A Little Patience and a Small Dose of Love

Love and Patience

She doesn’t pick up on social queues like girls her age should, and she doesn’t understand the concept of personal space- especially with people that she cares about.

She has a sensitivity to sound and her eye contact is poor.

She has to work extra hard when following multi-step directions.

She gives the best, tightest hugs and if you give her your time and patience, you would never question for one second how much she loves you.

She has no intellectual impairment but rather an encyclopedic memory that would blow you away.

Her glasses are always crooked and there are kids that exclude her, she also has friends that look for her and think she is hilarious.

She takes under her wing, and has a special place in her little 7-year-old heart for kids that are visibly struggling- so naturally and so much so, that if you were paying attention, it would make you stop and catch your breath.

She loves Star Wars and Pokemon, her books, music on the radio, her friends and her older sister.

She doesn’t listen well and gets obsessive about things such as time, schedules and menus.

Along with her sister, she makes up my whole world.

I would ask that you remember that you can’t always see what people struggle with on the inside.

A little patience, some understanding, and a small dose of love can make all the difference in somebody’s world.