How a Service Dog for My Son With Autism Impacted My Career

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Some people dream of doing great things in their life, that was never me, but I believe sometimes God has plans for our lives we never see coming. As a veteran firefighter, I thought I was doing enough to serve my community, until one day all that changed. In 2010 my wife found out that she was pregnant. While it was not planned, it was probably the single happiest moment of my life up to that point. Then I found out she was going to have a boy — wow, I was really in heaven now. I remember lying in bed thinking about all of the things we were going to do together: little league baseball, riding bicycles in the park, all of the things Dads and little boys do. Until, when my son was 3 years old, we learned about a 6 letter word that forever changed the direction of our lives: autism.

At the time I was crushed; all of those dreams and visions seemed shattered because I didn’t know anything about autism. In my mind our perfect little boy would never be, “normal.” I thought it was the end of the world, but it wasn’t. In fact, it was just the beginning of what I believe God had planned for me and my family. We didn’t sit around and feel sorry for ourselves very long. Yes, we grieved, and yes, it felt sad for a moment, but then we said, “Now what?” We started looking for ways to help our boy to the best of our ability. Then one day, while reading about different therapies, I saw an article about autism and service dogs. Who knew that article would change so much for my family and our community?

Service dogs, generally, are not cheap. In fact, the one I was looking at was about $15,000. However, we took the leap of faith and contacted the organization, they accepted us and we got started on what would be about a two and a half year journey. It was overwhelming to say the least, but we continued on. We began raising money, and it was coming in, slowly but surely. Then I contacted some people I work with at the fire department and our local IAFF union. They were excited to help, so we began to work on a fundraiser together. To make a long story short, we raised all the funds needed in just a few short months. I was flabbergasted! Why would all of these people want to help my family, my son? I had to do something to give back; I had to show my appreciation for what these people had done with more than just words, but how?

 

I pondered this for weeks, until one day it hit me like a ton of bricks. At this point in my life I had been a firefighter and EMT/Paramedic for 13 years and received thousands of hours of training, but I had never received any dealing with people with disabilities. That was it then — I was going to train other first responders how to interact with people with disabilities, not just autism, but developmental and intellectual disabilities as a whole. Even though I had never taught a class before, I worked for a year with many people and had lots of help developing a class and in January of 2017 we began teaching. I did not expect calls to come in from all over wanting our class, the news media showed up and pretty soon representatives from the State did, too.

I was way out of my element, but with the help and support of others, we continued on. Eventually we ended up in Gatlinburg, TN in a meeting with the State of TN commission on firefighting and the State Fire Marshal’s office. I was a nervous wreck, but that didn’t stop us. In about 10 minutes it was over, in a very uncharacteristic move for any state organization, the members of the committee made a unanimous decision on the spot. They made a motion to fund and see to it that every firefighter in the state of TN that receives state funded in-service would receive the class we had written.

There was no way to know that in a year’s time, I would go from reading an article about a service dog, to working on how to teach every firefighter in the state about disabilities, but that is exactly what happened.

My son’s service dog is a 15-month-old golden lab (golden retriever, lab mix) named Cinna, and we met him for the first time on Memorial Day, May 29th 2017. While I didn’t pick this journey, I believe God picked it for me. Because of that, he has allowed me to make the world a little bit safer for my son and people like him through a gift that I never even knew I had. While sometimes I wish life was different for my son, I can see now that it has a purpose. I believe God had different plans from little league ball or riding bikes in the park, God’s plan for us was much bigger, it just took a service dog named Cinna for us to see it.

Here is a video playlist of the class put together by the TN Dept of Intellectual and Developmental Disabilities.

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Photo image by Brittany Mowery

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How My Autism Diagnosis Gave Me a Sense of Belonging

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Before I was diagnosed with autism spectrum disorder (ASD) a year ago, I didn’t really know who I was. Growing up, I was an awkward kid who never really wanted to do the same things as her peers, and that only grew worse throughout my teenage years. I was really excited about things others around me were not, like 1960s sitcoms, subway systems and repetitively playing tic-tac-toe against myself. Everyone around me seemed to be making these new decisions with their time and money. They wanted to go on dates and shop at the mall for makeup, but I wanted to spend time talking about whatever my brain was stuck on that day or week or month. I just never seemed to fit.

My journey to being diagnosed wasn’t simple. I went to a therapist my freshman year of college for obsessive-compulsive disorder. I did it all privately; I didn’t want to tell even my parents how much I was struggling with anxiety and the transition to college. I sat down for my first appointment. (If you’ve never been to a therapist, it is usually an intake appointment where they gather information about you to try to help figure out a treatment plan.) Within one hour, this therapist told me she suspected I had Asperger’s syndrome. I left thinking she was wrong and never went back. Two years later, I reassessed the situation after struggling with more sensory processing issues. I actually did some research and found out she was right — many of the symptoms fit me. I found another doctor, and after four hours of assessments, he deemed me to fit the criteria. I walked out with paperwork in my hand that said I was, in fact, on the autism spectrum.

 

For the first time in my life, I made sense. Some people might think being diagnosed with ASD would be devastating and take a toll on one’s self-esteem. For me, it was the exact opposite. I found other people like me. I started to realize they were like me. They had obsessions too, and they struggled with socializing like I did. I wasn’t alone anymore. That sense of belonging made me OK with being different. I finally had an explanation of why I was who I was. I found an identity and became OK with myself.

I have found myself. Some people search their whole lives for their true identity. I found mine when I was 20. I am self-confident and have learned how to work around any social limitations I come across. I also have learned it is OK not to fit that mold. All of the unspoken rules I missed, all of the time I spent doing my own thing, all of the obsessions, all of the difference, all of the everything — it’s all OK. I am OK.

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Why I Wanted the Autism Label for My Son

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There’s a saying you might have heard, “If you meet one person with autism, you’ve met one person with autism.”

Sometimes I wonder if only those who really know someone with autism get how little others understand this saying. Not everyone who has autism has the same characteristics or traits. Just because your friend’s child with autism doesn’t make eye contact doesn’t mean my child won’t either. Just because the man with autism you worked with has a photographic memory, it doesn’t mean my child does, too.

There is a reason it’s called autism spectrum disorder, and in case it’s not obvious, the key word is “spectrum.” Everyone with autism is unique and the spectrum is huge.

Primarily, my 5-year-old son, Brody, has an undiagnosed genetic disorder with a secondary diagnosis of autism spectrum disorder and epilepsy. We are members of a great charity called SWAN UK (Syndromes Without a Name) who support families like mine, who have children with no overarching diagnosis to explain all of their symptoms. And we are part of a huge genetic study, called the Deciphering Developmental Disorders (DDD) to try and find answers.

I regularly hear stories that it wasn’t easy for parents to get an autism diagnosis for their child. It wasn’t straightforward for us, either.

Brody’s pediatrician was reluctant to diagnose him in case his autistic traits could be part of his undiagnosed syndrome. But the truth is, we may never find out what syndrome Brody has, so I was keen to make sure he had a diagnosis of autism. Thanks to his speech and language therapist, he received it last year.

I wanted a diagnosis, like so many others, because sometimes a label can help. Yes, labels may bring prejudice and ignorance, but they can also bring understanding and much needed support.

Too many of us know that when you have a child with disabilities, you sometimes have to fight for help and services. Without a diagnosis, this fight is a lot tougher. A diagnosis can help you win some of those battles, even if it’s not all.

And when Brody is upset because a hand dryer has gone off in a public toilet, simply saying he has autism can sometimes help to explain his behavior to those around us.

For me, that helps.

So, what’s our autism story? Well, it doesn’t look like the “Rain Man” type characters you often see portrayed on television.

I hate the term high or low functioning. It’s uncomfortable, clinical and rude. After all, we’re talking about human beings. We’re talking about my beautiful child.

Brody has a learning disability and struggles with understanding. He is nonverbal and dependent on adult care. He needs help with personal needs. He has impulse control and sensory issues. He can laugh and cry in what appear to be inappropriate ways. He has no danger awareness. And at this point we don’t know if he will be able to live independently.

But regardless of these facts, Brody is not defined by his autism or any of his disabilities. He is Brody — our brilliant little boy who is much more than these things.

Brody, who can look you straight in the eye and share a laugh with you, like only you and him are in on the joke.

Brody, who likes to be pushed in his swing or spun around in his IKEA egg chair.

Brody, who loves the car wash.

Brody, who likes to use your hand to point to things in books.

Brody, who could eat an impressive amount of McDonalds’ Chicken Nuggets if given the chance.

Brody, who loves to be tickled.

Brody, who although is up at the crack of dawn each day, loves to lean against you downstairs in the dark and snuggle (with his iPad of course) so you can get over the tiredness a little easier.

Brody, who has a smile that will light up the darkest of rooms and who has the best sense of humor.

I’m glad our son has an autism diagnosis — and I’m pleased that this diagnosis can hopefully help to ensure we can get him the right support he needs as he grows older.

But admittedly, I hope people don’t hear the word autism and just see a label.

I hope they see Brody — just like we see him.

For all of the wonderful things he is.

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Why I Initiate the Conversation About My Daughter Being on the Autism Spectrum

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Moms, dads, grandparents and caregivers everywhere, let this serve as your official warning: If I am out in public with my little girl, and she begins to “act out” in a way that is foreign to you, I will initiate a conversation.

I will talk about something which you might not know how to respond.

I will meet your gaze and tell you my daughter’s name is Piper, and she has autism. I am that mom.

Please don’t mistake my intentions. I will not initiate that conversation to make excuses for my child any more than I will utter those words with the intent of backing you into a corner. My goal is quite the opposite. I’ll tell you she has autism to open the door to reciprocal conversation. I’ll want you to know that as my reality plays out before your eyes, it is OK to ask questions. I will tell you her name to make her “real” to you, and not just some child having a hard time in a parking lot or on a playground.

I will tell you as little or as much as you care to hear. I will tell you autism is different for every child. I will tell you the behaviors Piper is exhibiting may seem odd to you (like continuous spinning or repetitive actions) but they are actually helping ground her in a situation that is beginning to feel overwhelming. I may even get personal, if the conversation leads that way, and tell you how painful it is when people choose to look away, as if she and what she is experiencing don’t exist at all. Because when it comes down to it, regularly averted eyes and silence hit me with a much greater force than any words someone could speak out loud. Because even if words are hurtful, I know Piper is present to the person speaking them.

I am that mom. I will tell you about Piper if you’ll let me. Perhaps we will have a meaningful conversation. That is my ultimate goal. Even if you don’t know how to follow up to what I have told you, and you change the subject or move on, maybe I will have given you something to think about later. Maybe you’ll look up some information about autism in your down-time, and the next time you find yourself in that situation with another mom like me, you’ll feel more comfortable reaching out. Maybe the information you find will enable you to give an informed answer to your own child when they ask you why my daughter was acting a certain way. As long as a door opens somewhere as the result of my words, awareness will have spread a little bit more.

I seek to spread autism awareness because it is key to the future of children like Piper. The little conversations you have with your children about her, and others like her, will shape how she is viewed and treated by her peers. This has a direct impact on self-esteem, especially in social settings, which can be most challenging for anyone on the autism spectrum.

My experience as the mother to a child with autism has taught me that sometimes people don’t know what to say, and other times, they don’t know if it’s OK to ask questions. By initiating a conversation that might feel uncomfortable to you, I am giving you my permission (practically begging you, as a matter of fact) to ask away. I am an open book, and Piper’s story is still being written. If, in response to what I say to you during our brief encounter, you step out of your comfort zone and learn, this gives you the power to help write a positive chapter somewhere in her story. Just by learning, you have the opportunity to positively impact a life. I believe that can be rewarding for both of us.

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Connecting With My Son Over Watermelon Slices

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He was about 5 years old at the time and just like most kids, interested in exploring his surroundings. Although, as a child with Fragile X syndrome and autism, he explored his world a bit differently than other children.

That day we were at Wal-Mart.

In the produce section.

Payton was diagnosed as being on the spectrum shortly after turning 2. After visiting with many physicians, psychologists and therapists, it wasn’t until we met a wonderful physician 150 miles from our home who, within five minutes, was able to determine our son was on the spectrum and having Fragile X syndrome. A couple genetics tests and a few weeks later, we knew for sure.

Since that time, his mother and I did everything we could to learn about his world. We researched what therapies to use. Visited potential schools for Payton. We did everything parents do so their children will succeed. But in that time, through all the research, the traveling and the discussions with specialists, nothing prepared me for a seemingly widening gap between Payton and me.

Payton and I weren’t connecting with one another. Sure, he would return a smile or two if prompted, but would quickly return to whatever he was focused on at the moment. I would try and do what he was doing, get to his level, yet he was completely secure in his own world. It was disheartening at times.

Here was a boy with a loving father who so desperately wanted to share experiences with him. A father who wanted to explore the world together and become a super tandem of father and son.

But that didn’t happen until, “Whose kid is this?” A loud, booming voice could be heard over my left shoulder. I held the cooler door open with my right hand as I turned my head in the direction toward the man’s voice.

It was my kid, Payton.

It must have taken him less than a few seconds to wander about 30 feet away from me. He was standing there, startled and looking into a refrigerated, open shelf display unit used for fruit. The man, about five feet away from Payton, was easily four or five inches taller than my six foot frame, and probably twice my weight.

I dropped the shopping basket as the cooler door slammed shut and ran over to my son.

“People want to eat these, he shouldn’t be doing that!” He was just as loud as the first time. Almost as if he wanted to make an example out of my son.

“Sir, I can explain. You see my — “

Before I could finish he continued, “It don’t matter about your son. You need to curb your kid!”

It don’t matter? Of course it does! Doesn’t he understand?

My inner voice was formulating a wonderfully articulate response about the tendencies autistic children have in a new environment. But I knew it was useless. The Wal-Mart produce section isn’t the place to hold an intellectual conversation about the rearing skills necessary to raise a child on the spectrum. And even if it was, this man surely wasn’t going to listen.

“Yes sir. I’m sorry. I will keep a better eye on him next time,” I responded as I stepped between him and Payton.

“Well, you better. We are shopping here and don’t need our fruits all messed up.”

“I understand, thank you.” And with that I turned around, realizing I didn’t even know why the man was upset in the first place.

On the open shelves, and in the cooler below, were dozens of watermelon slices neatly packaged on white styrofoam squares and wrapped with cellophane. They were on sale and seemed to be a popular item on this summer day.

At first, I couldn’t find any reason why the burly man made such a scene. Perhaps Payton was simply in his way. But the display was huge with plenty of room for anyone to easily select a nice piece of watermelon.

And then I saw it. On the lowest shelf just above the cooler, there was a piece of watermelon with what appeared to be holes in it. There were about five or six holes pushed about an inch deep into the flesh of the watermelon, just the size of a 5-year-old’s finger.

I looked at the one next to it which had about four holes pressed into the cellophane and into the fruit. Below, another one with about eight holes. Another with six holes. And another. In total, there were about a whole watermelon’s worth of slices which Payton had effectively dented into cratered pieces of pink melon.

The picture formed in my head. In the few seconds I was determining if I wanted sausage or pepperoni on our frozen pizza, my son was systematically ruining each piece of watermelon with his tiny fingers. Payton was a quick worker and I could see that it may not have taken much longer for the remaining “good” pieces to feel his fingers, and the burly man sought to stop it immediately.

But why holes in watermelon?

I had read early on — and seen firsthand — how Payton will explore his environment through tactile signals. He loved to touch, hold and feel everything. But here he was simply sticking his finger in fruit!

I looked down at him. He briefly looked back, a bit curious but unconcerned, and swiftly proceeded with his mission of sticking each piece of watermelon with his index finger. I didn’t stop him but just watched for a moment. Squish, squish, squish. He kept going one hole at time. After five or six holes, he moved onto the next piece.

I don’t know why I did it, but I stuck my finger into a piece which was on a higher shelf than Payton’s, almost chest high. Squish. I could feel the watermelon easily give way under the pressure of my finger. Even more, I could feel the actual structure of the watermelon break down the further I pushed in. It was a curious sensation, one I did not expect.

Payton stopped.

He was looking up at my piece of watermelon. Then he looked at me, in my eyes, for longest time.

I looked back at my piece of watermelon and gave it another squish from my finger. My head turned back to Payton who was watching intently. Then he turned and stuck his tiny finger into a fresh piece of watermelon. He looked back at me with a smile, it was now my turn.

The back and forth continued. His turn, my turn. A few minutes had passed before a store employee approached.

“I’ll pay for any damaged watermelons,” I said before she could speak.

She smiled, “have fun!”

I can only imagine what other people were thinking, I could feel a few eyes setting on us and nods of disapproval in my peripheral, but I didn’t care. Payton and I had a job to do, or maybe it was a game. Either way, for the first time I felt we were on the same page, completely and uniquely connected through this new, fun activity of ours.

Finally! We were the dynamic father and son duo!

It was a wonderful feeling I’ll never forget. I often look back upon that day at times when Payton and I can’t seem to connect, I remind myself to slow down and enjoy the moment. Inevitably something will appear and become a catalyst for a connection. Just like it did the first time in the Wal-Mart produce section.

Oh, and for dinner that night Payton choose the sausage pizza, while I provided us with 19 slightly dented watermelon slices!

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To the Hairdresser Who Helped My Son on the Autism Spectrum

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They say we affect the universe even when we move a finger. Everything we do has an impact. Anything others do to us has an effect. We are all the product of each other’s actions and our lives are intertwined in ways we might not even know. That is the reason why I insist on being kind to everyone we come across because our kindness can turn an ordinary day extraordinary. This time my son and I were at the receiving end of this kindness, and that, too, in the most unexpected situation.

I love long hair on my son, but I love it even more when I get his hair trimmed and suddenly I see his twinkling eyes all round and bright that were peeping from behind his mane a while ago. However, this joy is entirely one-sided, because a trip to the hairdresser is no walk in the park for my son.

The hair dryers, clippers, trimmers, scissors, the apron they put on him, the holding his head down — there are too many things that make him extremely anxious and uncomfortable. Going to the hairdresser is an ordeal and we really plan ahead as a family for this trip. We always ensure both my husband and I are there, we have extra clothes packed in case my son throws up out of nervousness and we carry some distractions like his iPad and some fidget toys to keep him distracted.

This trip was not supposed to be any different. It was one of those “deal days” at the salon and it was rather busy, even at an odd time of the day. The wait in a crowded room and the hum and buzz around him had already pushed our son to the edge. When he was called in he resisted, and it was only after some convincing that he finally sat on the chair. I introduced him, I explained his sensory issues and other challenges — a routine I’ve learned to follow over the years as it makes things less complicated.

The hairdresser seemed nice. Like many people who have not worked with an autistic child but don’t want to do something “wrong,” she was cautious and careful, like she was working with hot glass while standing on egg shells. My son was already nervous and was trying to jump off the chair. In between trying to sit him still, distract him and cut his hair , it was complete chaos — like always.

It was then this lady, Terry,  who had checked us in walked up to us and held my son’s hand. She knelt on the floor and gestured the hairdresser to pause. She talked to my son in very gentle whispers, rubbing his palms, reassuring him and singing rhymes to him. I could see she was rusty with the rhymes, but she tried and laughed softly every time she messed up the lyrics. We could see a smile slowly sweeping across our son’s face. He felt safe with his hands firmly secure in his new friend’s hands. Unlike all our previous visits, we were no longer trying to hold our son’s head in place, or hug him tight to hold him down. He was not stressed anymore.

As the hairdresser quickly and swiftly resumed her job, some of this magic brushed off on her, too, and she felt more at ease. She was now also singing to my son while Terry sat there talking to him, keeping him not just distracted but also engaged. The iPad seemed useless against the magic she was weaving with her words and actions. I could see Terry covered from head to toe in my son’s hair, still smiling that charming smile, still greeting her customers, still comforting my son. Not a frown on her face.

Before we knew, we were done. This time it did not seem like an ordeal and these 10 minutes did not feel like an hour. It all felt like a gentle breeze that brushed past us and left us refreshed. Those 10 minutes taught us the beauty of kindness.

Sometimes all it takes is a warm hug, a reaching hand, a genuine smile and a wonderful heart to make a day extraordinary. Life is made up of these beautiful, grateful moments. The rest is just frills, like a glass of martini with a fancy stirrer, good to look at but it’s the martini that keeps you going, not the stirrer. Thanks Terry for adding another glass of martini to my life!

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