James Guttman

@jamesguttman | contributor
James Guttman is the dad behind Hi Blog I'm Dad. He is the father of two children including one nonverbal son. Follow his writings about parenting, Autism Appreciation, mental health, positive thinking, and more at HiBlogImDad.com.
James Guttman

The Missing Piece of Autism Awareness

When people hear that my child has autism, it’s hard to tell who they are picturing in their minds. For most, it’s a duplicate copy of the person they have in their own lives who has autism. It could be a neighbor who was diagnosed in adulthood and sometimes feels uneasy at parties. It could be a cousin who asks many questions and has hobbies considered unique. It could be a TV character who solves crimes and goes to med school at 10 years old. It’s a thousand possibilities. Most times, though, I know they aren’t picturing my son. Lucas is 11 years old and non-verbal. His lack of speech is something that is made up for, to the best of his ability, by hand signals and communication devices. Still, he struggles with many life skills and motor functions that other children his age might have picked up already. A good amount of his missed milestones will remain missed and the help he needs will likely persist for much of his life. Even with all of that information, you’re still not picturing him. Lucas makes eye contact. He makes so much eye contact that he will repeatedly tap you on the shoulder and stretch his face to meet yours. He enjoys clapping, “Sesame Street,” and hugging. He has no aversions to loud noises to the point where I have seen him sleep through a fireworks display. No one loves with the same enthusiasm he does and it’s not abnormal for him to come by, out of the blue, with a kiss for me. Alongside his sister, he lights up my life, and all the help I offer him pales in comparison to the joy he fills in my heart each and every day. Still, that’s just a small part of what makes him the person he is. There aren’t enough words to describe the person he is and why he is such a huge part of our lives. Being aware of autism is a great step for those who might not know about it. This yearly campaign has done a lot of good. It leads to less uncomfortable moments in public and even fewer insulting stares from passing strangers. He’s not hidden away or kept home for family functions. Lucas is a part of our lives and the push for autism awareness has been a big help in making that a reality. It has given me comfort knowing that some ways that his behavior plays out won’t be as misunderstood by others as they once might have been. However, autism is a long spectrum with so many lives affected in countless different ways. Knowing my son is nothing like knowing another person with autism. He’s his own person. He’s unique. Saying “Autism Awareness” is like saying “Child Awareness.” Sure, you might know the kid next door, but you don’t know the kid down the block because of it. They’re different people. The same can be said for Lucas. Even another non-verbal child, close to his place on the spectrum, who shares many of his personality traits won’t mimic him to the point that they are identical. He can’t be found in a book. None of us can. We’re all unique. People with autism are just that – people. Being aware of what autism is may help to bridge the gap of understanding, but it doesn’t sum up everything in a neat little package. There are still things like Autism Acceptance and Autism Appreciation to focus on after you become aware. There’s also just getting to know someone as an individual and recognizing what makes them special. I want the world to know my boy. I want them to see that autism means many things. For my son, it makes up some of the best parts of his personality. My son isn’t a category or a label. He’s not a puzzle piece or a movie role. He’s amazing. If you really want to know who he is, you just have to know him. In my eyes, my son is less about Autism Awareness and more about Awesome Awareness. That sums up who he is best.

James Guttman

The Joys and Challenges of Parenting a Nonverbal Child With Autism

I talk a lot about being positive. To be honest, though, I’m not entirely sure what that means. I know that it’s about finding bright sides and silver linings with an upbeat attitude. In that sense, it is something I embrace. People hear my words, especially as it pertains to my nonverbal son with autism, and remark about how much positivity he and I share. The truth is, I definitely had to work my way up to certain understandings. When Lucas was still a baby, struggling to reach all the milestones the thick books said he should, I battled a silent, yet constant, inner fear. My head swirled with “what ifs” for his life and concerns about the judgments passed by those around me for his differences. Every confused stare from a family member left hanging on a high five and all the questions about whether “he has said anything yet” hit me hard and often. What if it was my fault? Either through nature or nurture, maybe I’m the reason for his tougher lot in life? Could I have caused his lack of speech myself? Family and friends, some well-meaning and some just awful human beings, posed those very questions to me at times. It made me feel guilty to just think about it, but of course, it wasn’t true. This stiff upper lip I display today developed with time. It came from watching him grow, learn and find his place in the world. Language still hasn’t come and there is still a long and probably unfinishable road ahead. However, certain things that were impossible for a baby Lucas to do started to become feasible with age. Whether it was sitting for a show or letting me cut his hair, my son was becoming his own person. I pointed that out last night, when I took him and my daughter out to the ol’ California Pizza Kitchen. Despite hunger and a long wait, Lucas politely sat, without any iPad or electronic toy, for the duration of the meal. I pointed it out to his sister. “Do you see this? Remember when we couldn’t take him out to a restaurant like this because he would get overwhelmed and try to escape or scream or fall asleep? Remember he fell asleep on the table at Friendly’s? Look how well he’s doing now!” Less impressed than me, but impressed nonetheless, she nodded in agreement. He has a lot to be proud of and we have a lot to be proud of him for. The happy train, while not running as often and strongly as some might assume, is still real around my head. Many days, Lucas is my favorite person to be around. For all the communication pitfalls we hit or messes he can’t clean, he is one of the easiest and cheerful companions I can have by my side. We share unspoken expressions that elicit laughter and his glowing smile for me, even when I’ve done nothing to earn it, makes me feel like the most special person in the world. It’s all good. Actually, it’s mostly good. To be honest, there are definite down times and almost all of them are due to me. The love I have for my child is so massive that, while it is the cause of my pride, it’s also the anchor of worry that hangs around my neck. Sometimes I vocalize my worries when we are alone. I’ll walk into the kitchen to find that he’s just gone into the fridge and stuck his hand into an uncooked platter of spinach artichoke dip waiting to be made for dinner. There are handprints all over the door, his pants, and his face. I stand there and, to put it mildly, I’m deflated. I’m not going to be here forever. I worry about you. Those moments where it is just him and me, I’m more honest with myself than at any other points of my day. Negative? Positive? Neither. The problem with all of this is that nothing I’ve said is untrue. One day I will be gone. One day he will be grown. I worry that he will struggle to find someone to help him. It rips me apart inside just to think about it. I know others who care for an adult with disabilities on some level. I know I am going to be one of them. Yet, am I positive most times? Yes. Seeing the good in my son isn’t some sort of mental “positivity” trick. It’s real. It’s about noticing the great things that are happening and the successful progress he’s making. He didn’t sit at the table nicely three years ago. Today he does. That’s not positive. That’s a fact. It’s a parental observation that, if noticed, can fill you with pride. That doesn’t erase the concerns that live in my head every single day. They’re the fuel that pushes me forward to teach him everything I can. Without that sense of dread that dwells in the back of my brain on a regular basis, the desperate race I run to help him reach those accomplishments might not feel so dire. Those negative feelings of worry push my positive actions of parenting. Sometimes it kills me inside to think about them, but they’re important. Without that knot in my stomach over his future, I might not be as present today to help him climb that ladder. Am I sure that these “negative” emotions make me a better parent? I’m positive.

James Guttman

Why I Believe Autism Awareness Is Still Needed

Autism awareness can be a polarizing subject. For some, it’s something to be celebrated, shared, and written about. For others, it’s offensive and can cause unhappy and resentful reactions. The most common reason from those who stand against the day, month, and idea of Autism Awareness is that it implies those with autism aren’t prevalent enough to be seen normally by society. When questioned, they will usually say, “People should already be aware of autism.” They wouldn’t be wrong. People should already be aware of autism. But people should already be aware of a lot of things. The fact of the matter is that people aren’t usually aware of anything that hasn’t personally affected them or their family. It doesn’t matter whether that thing is a disability, preference, belief, or superpower, once you have a loved one with that experience, be it positive or negative, you find yourself educated on it on a deeper level. Find a parent with a child who plays soccer and they will repeat everything back to you about the rules and regulations on the field. Find a person who had a parent with cancer and they will tell you all about the treatments doctors suggest. Talk to Batman’s butler and he’ll tell you the cheapest place to buy bat food. I have a child with autism and, truth be told, I was mildly aware of what it was before he was diagnosed. However, as I later learned, awareness is not about simply being aware. I was aware of autism, but everything I thought I knew came from television and movies. When they said my boy was on the spectrum, I imagined him lining up shoes or asking many questions. I envisioned a lifetime without hugging or affection. My mind drifted to television characters who became socially awkward doctors or could solve a mystery when no one else could see the truth. I had a world of ideas about what my son would be and how autism would affect him. I was aware of what the world told me autism was. Lucas is none of those things. He loves to come over and hug me and, since he is non-verbal, he doesn’t ask me any questions at all. There are no lined-up toys or shoes. In fact, he tosses his bedsheets around every morning like a tornado. He struggles with certain life skills and excels at others. He needs assistance in many activities but can follow a routine amazingly. He’s unlike anyone I ever met or anyone the movies told me that someone with autism should be. As he was growing up, I would press the professionals about how this could be. I’d say, “He gives me kisses throughout the day. How can he have autism?” I thought of Dustin Hoffman screaming when Tom Cruise put his hands on him. That was autism, right? Rain Man said so and, if my boy didn’t do that, he didn’t have autism, right? Wrong. He does have autism. What I learned was that autism isn’t one specific thing and it changes from person to person. It’s one of the most unique and frankly, beautiful personality traits I have ever witnessed. My boy doesn’t have an ego. He’s not selfish or cruel. He’s not duplicitous or snide. His autism is a big part of what makes him so loving and, in many ways, vulnerable. It’s hard to get that through to people. They assume that his inability to speak will cause him to lash out. They warn me that as he gets older he will be “harder to control.” They make assumptions based on people they know, stories they heard, and autistic children they’ve witnessed act out. My son isn’t those people. My son is who he is and, while the world might be aware of the term “autism,” they’re not aware of my son. They’re not aware of his individuality. They don’t know him. It’s my job, as his father, to make sure they do. That is what Autism Awareness means to me and that’s why it is so important. It’s not something to be offended by and it doesn’t suggest that the world is unaware that autism exists. They are aware. They know it and they see it. In order to truly understand it, though, days like Autism Awareness Day and months like April are important. It’s a chance for parents like me and people like him, provided they are able to communicate their experiences, to share their stories. The world is ready to listen and it’s up to us to say it out loud. Make people aware of autism and, if they say they already are, make sure you clarify exactly what it means to you, your family, and the people you love. I think you’ll find that no matter how aware someone is, they can always use more information and a fresh perspective from people who are willing to offer it. It will help more of those in the world to understand and accept the beauty of people like my son.

James Guttman

Finding Connection as Families With a Child on the Autism Spectrum

I remember Father’s Day was a warm one that year. We had a great time, but leaving the house for dinner felt like a chore. The family was all hot, tired, and just ready to feed our faces. Unfortunately, going to a Long Island restaurant on Father’s Day can often feel like a visit to the Department of Motor Vehicles on Awful Day. Between the waiting, crowding, and the noise, it can be a little overwhelming. Scenes like that always make me worry about Lucas. While his older sister can endure these types of outings with only moderate whining, my son sometimes doesn’t adapt as well. As a non-verbal 7-year-old with autism, Lucas could get antsy and fidgety. Even with his iPad mini firmly in his grasp, he’d sometimes find himself overwhelmed with boredom. I try to keep that in mind and focus on making sure he’s content. This day, he really held himself together. Sure, there was some aggravation over what turned into an unusually long wait, but we made the best out of it. Sitting nicely at the table with the view of Freeport’s waterfront behind him, Lucas was bouncy and happy, so I was too. We all were. From over his shoulder, through the window, there was a slightly older boy seated at an outdoor table with his family. He was in my peripheral vision, but I could clearly see him jumping around in his seat and seemingly entertaining his mom and dad. I barely noticed them at first. After all, I was there to focus on feeding my face and having a good Father’s Day. As the meal went on, I noticed the boy peering through the window at my son’s iPad. Again, it was just from the corner of my eye, so I didn’t get a clear view of it all, but I could see it happening. My dad senses spiked, but ultimately I ignored it and figured it was just what kids do. They’re curious. There was nothing wrong with that, and as long as no one bothered us, I wasn’t bothered. We were fine. Lucas, I want to add, was being fantastic here. The food took forever to come out, but he displayed a great deal of patience. I couldn’t have been prouder. While my focus was on how wonderful my son was, though, my hazy side view peered over his head to the window behind him. That’s where, I was almost positive, I saw the boy look at him, laugh, and turn back to his family. What the heck? I felt that protective anger bubble up inside. I stared through the glass to see this kid quickly turn around to peer in our direction again with uproarious laughter and then turn back to his parents. Surprisingly, they were laughing too. I started to get even more enraged. What should I do? My immediate instinct was to smash the glass Hulk-style and barrel through like an action movie screaming, “What exactly is so funny?!” Then again, I knew that would ruin Father’s Day, and probably my life, all for an offensive action that I wasn’t sure was even happening. To be honest, I was more confused by it than angry. Keep in mind, this rarely happens to me. Strangers don’t comment on Lucas or cause conflict with him when I’m around, but I constantly struggle with not wanting to overreact to ambiguously minor moments. This felt like it might be one of those, so I took some time to process it and see if I should maybe relax. I continued to glare through the window at this giggly family and was no longer hiding it. I hated how this happy-go-lucky group was all laughing together at my son for what they apparently saw as being “different.” What kind of family would do that? I just sat there staring at them. Giggling. Eating garlic bread. The dad putting the son on his lap and tickling him. The… Wait. What? Yeah. This kid was about 10 years old. Most children don’t do that in the middle of restaurants when they start hitting that age. I know my daughter didn’t. It seems like something more in tune with what Lucas would do. For the first time the whole meal, I really looked at this boy and his family – not from an angry side gaze but from a direct stare. That’s when I saw it. He wasn’t making fun of Lucas. He was just like Lucas. I don’t simply mean that he appeared to be non-verbal. He did, but he also shadowed my son’s mannerisms and behavior more than anyone I had ever seen. He laughed wildly as his parents bopped him up and down on their laps. I noticed his darting glances, casual shouts, and, for the first time, I saw his iPad. It was the same as the one my son has — complete with a matching carrying case. That’s what they had been looking at. That’s why they had been laughing. The stares, laughs, and seemingly rude behavior was all just their reaction to seeing something they thought was similar about us, not different. I never saw it coming. I’ve thought a lot about that day. I’ve gone over my false assumptions and paranoid approach to strangers. I imagined the worse and assumed it all was happening around me. Yet, when I stopped imagining and focused — both figuratively and literally — on the people who really were around us, I saw that it wasn’t about our differences. I saw that these people were much more like us than I could have ever thought. From the side of my eye, I didn’t notice. I had to look directly to see who they really were. If I never did, my memory of that day would have been much different than the reality it truly was. Poetic, right? I mean, this is some classic novel fodder for English classes to debate. Yet, it happened in real life. The symbolism was shockingly on point. It was as if someone was writing this out for me to read, rather than to live. It was a reminder that while autism is unique and disabilities aren’t shared by the majority of people, they still exist outside of our home. With everyone repeating “if you meet one person with autism, you’ve met one person with autism,” it can be easy to forget that. It can be easy to feel alone. This boy and his family showed me that we weren’t as alone in the world as I felt at the start of that meal. There are plenty of people just like me, Lucas, and all of my loved ones. Sure, the differences can be overwhelming at first glance, but once you focus on who people truly are rather than hazy assumptions from the corner of your eye, you’ll see many more similarities than you ever did before. I know I did.

James Guttman

I'm Not a Hero for Being a Good Dad to My Son With Autism

I’ve received some strange compliments in my life, especially as it relates to raising my children. As a very-involved father, some professionals have marveled at the fact that I’m involved at all. In the words of one shocked special education coordinator, upon receiving a call from me rather than my wife, “Oh, well. OK. Ha ha. We like dads here too!” I told you. Weird. The bizarre reactions to a man who cares for his children stretch even further when one of those children has autism or anything deemed a “challenge.” It’s at this point where all the memes, focus, and discussion centers around mothers. Whether it’s a comedic infographic on Facebook or a t-shirt with way too many words printed on it, all anyone can talk about is the strength of the “mama bear” in the face of this somewhat-overhyped adversity. As the father of an 8-year-old nonverbal son, I have dealt with surprised professionals and bizarre praise. The most perplexing happened early on, and to this day, I still think about it. We were going over my son’s eventual school plan with a number of different “experts.” One, with her studious spectacles and three-ring binder, offered me these words of… uh, something. “It’s good that you’re so involved with Lucas. Many fathers in your position can’t accept their children.” I wasn’t sure what she meant. So, I asked her. “What do you mean? Accept them?” I wasn’t prepared for her confused expression. In hindsight, I guess she was so used to saying things like that without being asked to explain that it put her on the defensive. If it was meant as praise, it shouldn’t have been so difficult to offer clarification. “Well, they don’t accept them. They can’t really come to grips with it.” She hadn’t explained anything, but simply swirled the letters around in her word salad, so I told her the assumption I had made about her “compliment.” “Are you saying they leave? The fathers leave their families?” I was familiar with the feeling in the air. It was that awkward moment I had created at different times in my life. A voice in my head says, “Just let it go, weirdo. She’s being nice.” But another voice says, “Yo. This lady is badmouthing your kid.” She seemed uncomfortable. I was too. But still, she had no choice but to answer. “Yeah. I guess.” “Well, I’m not going to leave him,” I responded. “I love him. I guess he’s lucky to have me.” That back-and-forth exchange has rattled around in my brain for the better part of six years. It was one of the most insulting things — not just to me, but to dads in general. It was praise for not being a piece of garbage parent. It was applause for not leaving my family because my child hadn’t turned out in a way some people would deem perfect. While many mothers are being congratulated for honoring commitments to their children with disabilities, fathers are being congratulated for staying in the house. It’s such a difference in bar placement, and one I find a bit insulting as a dad who couldn’t imagine any other scenario. I love my children and wouldn’t change them for the world. My son has autism. My daughter does not. My love for each one is different but equal. The bonds I share with both are stronger than I have with any other person on the planet. I can’t describe what we share, but I know it’s special. Raising them isn’t just a commitment. It’s a privilege and an honor. There’s no reason to marvel at the fact that I’ve remained with my kids. Instead, marvel at those who choose not to. Marvel at those who decide to bring a baby into the world and then walk away because they aren’t some sort of idealized dream they had of what a baby “should” be. Point at those fathers. Give them the criticism they deserve. Their choices aren’t the norm and mine isn’t the exception. At least, it shouldn’t be. Just like that coordinator said many years ago, “we like dads here too.” We should. We all should and we should hold them to a higher standard. Our responsibilities are just as real as all the mama grizzlies sending each other positive vibes on social media. Our standards for all parents should be higher and it’s about time we held ourselves to them.

James Guttman

Joining My Nonverbal Son's World

When my family goes out, sometimes it can feel like there are many eyes on us. Because my son is nonverbal with autism, there can be some moments that garner people’s attention or reactions. I don’t blame others for this. Sometimes Lucas’ excited yelps even startle us, so it’s hard to be offended when a stranger jumps in a public place. As long as the reaction isn’t dramatic or rude, we just let it go. We’re used to Lucas’ occasional shouts. Strangers aren’t. We get it. I can also understand their position because there was a time when I didn’t have a child on the autism spectrum. In fact, there was a time when I had no kids at all. It was a million years ago, but it definitely happened. I have pictures. It’s those outside world moments that stand in stark contrast to the inside world our family shares together. It’s a world, behind our front door, where we can all be ourselves whether we’re on or off the spectrum. The happy screams or repeated actions that might attract attention at an Applebees, are just a regular part of our family. It’s the same as how my daughter will spin around laughing until she falls down and, usually, hurts herself. We all have our personalities and we all love each other for it. There’s no judgment or disapproval. No one tells anyone else how to be in our home. You get to be who you are. That’s us. That’s the real us. It’s who my son gets to be when we break away from the pressures of using forks or sitting nicely for a dinner out. Waiters don’t rush over during an impromptu meltdown to assure me, “It’s alright. Don’t’ worry.” At home, he doesn’t have to be who the world wants him to be. I don’t either. None of us do. We can just be us. We can sit with a board book and, with the turn of each page, flick the corner to make a “boing” noise. No one tells us it’s wrong and there are no eyes watching from across the room with a twist of misplaced sympathy. To outsiders, who view him in fleeting moments where he’s expected to conduct himself a certain way, Lucas might seem so far away and unable to interact. That’s pretty far from the truth, though. His approach to the world is the most unique I’ve ever seen, but it’s not oblivious. There are things he loves just like everyone else. I love discovering what they are and trying to figure out what he loves about them. When he was smaller, I didn’t fully understand that yet. I don’t blame myself for not understanding. That’s the natural role of a new parent to a child on the autism spectrum. New moms and dads are usually new to kids in general, so navigating a nonverbal relationship can seem more than daunting when you’re still trying to figure out how to just be a parent. You try to get your kid to play with Legos or wave to the guy in the Santa suit. When he doesn’t, you hurt because you see it as something your child is missing out on. I was the one who was missing, though, but not in the way I was thinking. I was missing out on Lucas’s whole world. It was happening in front of me, but I was too busy wringing my hands over his actions to notice what they were. The clapping, the spinning of wheels on his toy car, and his fascination with reflections were all on full display. Instead of taking part or wondering what he loved about doing these actions, I’d see them and think, “How can I get him to stop doing this and do the things I want?” It’s a selfish way to approach a relationship. Of course, Lucas should try to play my games and take part in my activities. That makes sense. Why then am I not taking part in his? The same apathetic nature he had to my events mirrored the way I acted with his. I felt like a huge hypocrite. Nearly every day, I watched as he took his toy telephone and would wheel it in and out from under the chair in our living room. He’d stare at the mirror behind it and watch as it popped out slightly. The look on his face was very serious. Then, one day, I waited until he stopped for a moment and patted my chest to ask if I could join him. He let go of the car and allowed me to wheel it myself in and out from under the chair. He watched intently in the mirror as someone else was doing it for the first time. When I finished, he leaned in and gave me a hug. At that moment, I knew I had done the right thing. In my heart, I knew that he didn’t feel as alone as he had before I joined him. Our relationship changed that day and it’s been better ever since. Just as my son will now wave to company or sit nicely in his seat for me, I will bounce a rubber ball on the corners of his bed or watch the same Raffi song over and over on Youtube until my ears fall off for him. It’s only fair. Just as I want him in my world, he wants me in his. Nothing makes a father feel prouder than that.

James Guttman

Why I'm Sometimes Defensive as a Parent of a Child With Autism

When my daughter was a baby, people often gave me compliments on how well she was doing. Every wave or smile was like an extra bullet point on my parental resume. In my eyes, and perhaps the eyes of others, her victories were also my victories. Olivia did all sorts of baby tricks, like high-fiving and wobbling across the floor while visitors applauded in amazement and credited her success to my parenting skills. On the rare occasion our little superstar would slip up, those same guests offered fresh ideas to get her on course, often citing real life examples from raising their own children. These well-wishers gave us parenting tips to make our smooth sailing even smoother. Most times, they were ideas we had never considered and helped with whatever small issue we had. While my daughter hit all of those milestone check boxes either right on time or ahead of schedule, my son didn’t. As a 7-year-old nonverbal boy on the autism spectrum, Lucas has had a very different story. Those early moments of baby-performing we had relished just a few years earlier with his sister, were now gut-wrenching pressure auditions for loved ones. We’d all stare for what seemed like an eternity, waiting for my son to do that wave I was absolutely positive I saw him do last week. They’d hold their hands out patiently for high-fives that didn’t happen or words that weren’t said. I had done nothing wrong, but at the time, their confused glances sure made me feel that way. Rarely does anyone say anything about autism suspicions or learning delays when talking to a parent. Most friends and family will avoid it all together in favor of, what I can only imagine feels like, a better option to discuss. They imply you’re doing something wrong and offer advice to correct it. While not said with intentional malice, their words only solidified the misplaced feelings of responsibility I had been battling in my brain. Now keep in mind, parenting tips aren’t exclusive to a child with delays. As I mentioned, we heard suggestions for my daughter, too. The difference, though, was that these unsolicited pieces of advice, since dealing with a situation many parents can’t relate to, were often so basic that they felt insulting. They weren’t unique secrets about putting VapoRub in the humidifier or mashing up hidden vegetables in a toddler’s dinner. These were things like this: “You know what it is? You have to talk to him. The more you talk to him, the more he’ll pick up.” The sad part is this statement isn’t said in an cruel way. It’s presented as genuine advice, even though common sense would tell you that it would be infuriating. The basic idea here is that I talk to my son so little that he hasn’t heard enough words to start speaking them yet. Wow, right? Sounds rough when you put it like that. The most infuriating aspect of this particular piece of wisdom is that it’s the polar opposite of the truth. I actually babble on to Lucas so much, that I wind up talking to him in his sleep. I’m not using a figure of speech either. I literally talk to him in his sleep. Strolling through a Target or driving with him in the backseat, I will carry on a lopsided conversation nearly the entire time. “Hey. Lucas. Luuuuucas. Hey. Look at that, buddy. I used to hang out down the block when I was a kid. You see that? We’re driving past it now. Look. See? Wave. Hi! Maybe we’ll get lunch. What do you want to eat? We’ll get you something good…” It goes on from there. He can’t tell me to shut up, so I just drone on to him about everything and anything. I’ve done it since the day he came home from the hospital and continue to this day. I tell him stories from my childhood and thoughts about pop culture. I sing him songs and complain about people who annoy me. I say it all, and Lucas listens to it all. Yeah, and Lucas sleeps a lot, too. It’s kind of his gimmick. Mid-sentence, I’ll glance down at him in a shopping cart and, while I see that he’s passed out, won’t let it stop my on-going narrative. “…I don’t know. I’ll see how I feel, I guess. Hey, I — oh, you’re asleep. When did you fall asleep, buddy? You must have been tired. Hey, do you like that shirt over there? Should we buy it? Let’s go look…” I speak to Lucas more than pretty much anyone else in my life. Our conversations may be mostly one-sided, but they happen and I enjoy them. I know it’s helped him learn and grow, but that’s not the main reason why I speak with him so much. Sure, it’s a great perk, but I would talk to him no matter what. I do it because I want to. He’s my son and I love him. The thing that people need to understand is that parents of kids with autism have most likely done much more research on autism than you can imagine. We read and ask questions constantly. Raising a child on the spectrum is a new experience for many, and when it affects your life, it brings a world of knowledge to learn with it. I’ve read a lot about autism since my son’s birth, but still stand in awe of the insight that so many other parents of kids on the autism spectrum and professionals possess. It’s doing all that research and then being told that, “you just have to talk to him” by someone who has not that can feel like a slap across the face. It’s like wandering into a room full of perplexed mathematicians trying to decipher an unsolvable formula they’ve devoted their lives to, you look at the cluttered whiteboard of numbers and suggest, “You know what you need to do? Math. That’s the key here. Addition is a good one. You can do subtraction, too. Have you tried all the maths?” They’re doing math. I’m talking to my son. We got it. In my life, I’ve never asked anyone how to “fix” Lucas or where his autism might have come from. Yet, I’ve been presented with many opinions about both. If my response to those people seems defensive, then that’s probably because it is. Any parent, whether their child has autism or not, would react strongly to a comment that implies their kid needs to be repaired. That’s just common sense. My kid’s not broken. In fact, my kid is perfect. If reminding people of that is considered “defensive,” then I’ll happily be defensive for the rest of my life.

James Guttman

My Heart, My Son's Autism and What's Really Important

In 2012, I had a heart attack — out of nowhere — at the age of 35. When I was finally wheeled into the hospital, I learned I would need to have a quintuple bypass that night. It all happened very quickly, and I wasn’t sure if I would ever step back into my home again. I would be lying if I said the months leading up to this event weren’t stressful. I had many different issues hitting me from many different sides. Some problems were more pressing than others, but they all swirled in my head and they all lead me to that gurney in that operating room with that stupid little blue shower cap on my head. My 18-month-old son, Lucas, was one of those concerns. It was still a few months away from anyone mentioning the word “autism,” but it was clear that he had significant delays. He never hit the same milestones as his older sister. While he was smiley and squishy, he had yet to start really developing skills that you’d expect from someone his age. On his first birthday, we had to prop him up with blankets for pictures, so he wouldn’t tumble over while sitting. I loved him so much, and that’s what made it so stressful. My brain would strain with worry over how I could “fix” him. It ate away at me. I constructed ultimatums in my head — telling myself that he would be talking by this age or running by that age. In the end, all of those demands I put on myself and my son were pointless. He was going to do what he was going to do at the rate he was going to do it. There was no way to pinpoint a definite date. That bothered me. I can still feel the painful frustration, feeling like I had done something wrong. At the time of my bypass, the last picture I had on my phone was from the night before, and it was of Lucas playing with a new toy. He had just been given one of those wooden peg boards that babies hammer into the holes. I remember how he not only couldn’t hammer them in, but struggled to even hold the mallet — I felt responsible. That was the night before, though. This was the day that I was having a surgery so major that, up until a few hours earlier, I don’t even think I knew existed. I was convinced that I was going to come out of this thing as less than what I was going in. Best case scenario, the new me would have a long road to recovery. Worst case scenario — new me is dead me. Spoiler alert: I did not die. I woke up the next morning sore in every possible way. It included such great moments as a tube down my throat and a fragile chest that felt like a garbage bag full of glass being held together by scotch tape. I laid in bed, moaning and flipping through channels for about a week. All I wanted was to be home again with my wife and kids. I just wanted to see them. I didn’t care what they could or couldn’t do. I never laid in bed and thought, “Oh. But Lucas doesn’t speak.” That never even entered my mind. I didn’t miss him because of what he could or couldn’t do; I missed him because he’s my boy and he’s one of my favorite people on Earth. All I wanted was to wrap my arms around them all again. Even the picture on my phone took on a different meaning. I no longer stared at it with a sense of sadness, lamenting over how he couldn’t hammer the peg. I looked at it with a sense of pride. This is my son and he’s waiting at my house for me. I can’t wait to see him. When I finally returned home, things were different. They’re still different to this day. I don’t look at my family for what they don’t do, but for what they do. Today, at 7 years old, Lucas has autism and doesn’t speak. Also, Olivia is 9 years old and doesn’t professionally sing opera. Life goes on. The things my son does, though, are fantastic. He lights up when I walk into a room and claps when I get him up in the morning. We share glances and expressions that say more than words ever could. He shares a bond with me that isn’t dependent on language. It’s a bond unlike any I share with anyone else. On the day when I thought everything I loved was about to be taken away, I missed the things I had, not the things I didn’t. Once I realized that, my life changed forever.