I'm James Guttman, father of two children. One six year old (non verbal) and one nine year old (nonstop verbal). My mission is to share stories about his family, understanding autism, life after a quintuple bypass at 35, and overall topics that he feels might resonate with others.
It feels like my nine year old daughter has a new must-have list every few days. These wished for items have ranged from L.O.L. Surprise Dolls in little packages that shoot confetti to squishy versions of foods to spinning finger toys that no one seems to play with anymore.
This week, though, all she wants are three things – art glue, baking soda, and contact lens solution.
Weird, right? It reads like a pledge class scavenger hunt. Luckily, I have contact solution for her to use. Actually, I should say that I had contact solution for her to use. Within minutes, she had already squeezed most of it out into pieces of Tupperware around our house.
It’s the activator. Kelly uses shaving cream. I use contact lens solution.
It’s an activator in slime-making. For those who don’t know, slime making is the latest craze at my daughter’s school and, apparently, schools across the nation. Slime-making is when you spend $30 on supplies to make a handful of sticky goo that you could buy for 50 cents in the vending machines as you leave the supermarket.
Yet, here we are. Our table is full of glue and powder. Our daughter’s hands have glitter stuck all over them. It’s basically slimeageddon.
To be honest, though, there’s also something pure about the whole idea. While I reel in horror at the thought of how it could wreak slimy havoc on our kitchen table, I also see it for what it is. Slime making has steered my daughter to her creative side and allowed me to remember that same side of myself that may have fallen to the wayside.
I can say that with certainty because, out of the blue, Olivia decided that she wanted to make her own stress balls. Unlike creating sticky contact lens blobs, the stress balls were completely her idea and involved filling balloons with rice. It felt that her newly creative streak had begun to steer her away from playing with toys and more to creating them.
Do you know what’s embarrassing, though? As she was making it, I thought to myself, ‘What a waste of time. You can buy those things on Amazon in bulk for next to nothing.” I didn’t even consciously think this thought. It just happened in my head. It was as if I was listening to another voice say it and I never felt as old as I did in that moment.
I used to do all of those things. I’d spend hours creating outfits for wrestling figures from electrical tape or making my own Colorforms. I lived for that stuff. Sure, real accessories or store-bought Colorforms were great, but when you make your own, it becomes an achievement. It’s an achievement that I’ve all too often been outsourcing these past few decades to Amazon and Target.
It sounds so cliché to say “my nine year old daughter taught me about what’s important in life.” Every time I say it, I imagine rolling my eyes at someone else saying it. I don’t mean it to be a sugary platitude. I mean it seriously. It was as if she started humming the theme song to a TV show I forgot from when I was five. Without even knowing it, she reminded me of a part of me that I sometimes forget.
In many ways, I still do creative things, but with an adulty spin on it. I like to make pizza dough from scratch and do work around the house. I still know that feeling of accomplishment, but know it in practical terms. Like most adults, my hobbies have slowly begun to center around accomplishing tasks around the house. Whether it’s feeding people or fixing a broken bi-fold pantry door, my creative sparks tend to check off other items from my to-do list.
Not Olivia, though. Making slime benefits no one. Heck, it doesn’t even benefit her. Inevitably, she has glowing pride for a few hours…followed by disgusted hand washing…and eventual complaining about how it “doesn’t feel the same” the next day. Yet, she’ll do it over and over again with the same process following each time.
It could be mind boggling and I still hadn’t fully wrapped my head around her pointless project when she started complaining about her recipe. She was calling for more ingredients like Old King Cole calling for fiddlers. Her hands, covered in shaving cream and glue, were giving me panic as she screamed for more baking soda. I reached my breaking point and decided to find a less mess recipe of my own.
Olivia, there’s baking soda everywhere. I found a recipe that has three ingredients. That’s it. Here, let me have the bowl.
I began stirring and adding in the contact lens solution. As it got harder to stir, I could see her looking into the bowl. At this point, though, I was emotionally invested and nestled it like my baby. It was getting better and better with each turn.
When it was done, I acted like I had just built the great pyramids. I felt like I had.
Look at that. That’s slime.
I placed it in front of Olivia and she picked it up with all the scrutiny of a pawn shop dealer. Eyeing it closely, she gave a begrudging thumbs up.
Eh. That’s good slime. I like the one with shaving cream better. But it’s OK.
That wasn’t good enough.
No way. That’s the best slime you’ve ever seen. Write that recipe down. Daddy’s the slime king!
Sure, I could once again wrap this creative spark up in the chore of “I’m spending time with my kid”, but let’s be honest. Olivia may have brought me to the slimy table, but once I sat there, it was all me.
And that’s when I got it. I understood the slime-making. It wasn’t about making a toy that you will barely play with or even touch again. It’s about showcasing your talents, experimenting with ingredients, and taking pride in what you do. It’s about the journey, not the destination.
That’s a lesson I used to know. Now, thanks to my amazing slime-making skills, I know it again. That’s worth the price of the ingredients alone.
Parents exaggerate about their babies. It’s not a secret. If you’re a new parent and doing it right now, we know. We know because we all do.
Maybe your two month old was randomly waving his arms and appeared to gesture towards the TV. So you tell people how your genius baby pointed directly at a show you like on television. People smile and play along with something like, “Oooo. Maybe he’ll grow up to be a big TV star!” But deep down they know and you know that it was all just a random moment in time. It wasn’t done on purpose, but you’re still proud because that baby, with all his random pointing, is yours.
I’ve seen this on small and large scales. In high school, a customer would come into the place I worked at and talk endlessly about how her four year old was reading labels off of medicine bottles at CVS. She’d recount how he could pronounce technical terms I never heard of and every tale involved a stranger telling her how amazing he was. Granted, that’s an extreme example, but you get the point. People like to talk their kids up. It’s in our nature. I do it too.
Then came the day when we had to start transitioning my then-two year old nonverbal son with Autism to preschool. We sat around my dining room table meeting with our coordinator and an administrator from the school district. I felt like I was in the principal’s office as we talked about numbers, reports, and observations from his home lessons.
For the bulk of the meeting, I sat and listened to all the things that my wonderful boy couldn’t do. I felt a bit attacked as they started rolling through them all one by one. It was a barrage that seemed to never end. Everything was about his shortcomings, which is the opposite of what the parent of a two year old expects to hear, and I just absorbed it over and over again until I felt numb. Finally, when the woman from the administration office asked if he has said any words and our coordinator answered “no”, my instincts kicked in and I said some words of my own.
He said “bye”.
Everything suddenly got very quiet.The woman from the district looked up at me and then back to her book, where she began taking notes.
He says “bye”. Anything else?
Our coordinator, who was familiar with my son, jumped in almost immediately.
I’ve never heard him say bye. He hasn’t said any words with me.
I saw how this one statement I blurted out had caused quite a stir. Still, I doubled down.
He did though. The other day. I said, “Bye!” Then he said like, “Ba”.
No one really said anything for a moment. They didn’t need to. I heard the way it sounded coming out of my mouth. Then our coordinator put her hand on my arm.
I know what you’re doing. It’s OK. This isn’t the time to do it, though. We need to make sure he gets the right type of placement.
That’s all it took. I sat there quietly for the rest of the meeting and, thankfully, he ended up getting the placement that he needed. Was it hard to endure? Yes. Am I glad that I did? Very.
It didn’t end that day either. Every year, we’re sent home a form from school asking us to fill in bubbles based on Lucas’s progress. They feature statements about his development and actions. Then I choose an answer of Always, Sometimes, or Never.
This isn’t a five question survey either. This is a small print booklet and the questions don’t take into account earlier answers. In other words, if question three asks if your child can speak and you answer “never”, you still have to go through questions about whether they use complete sentences or form questions. There is no section that says, “If “never” skip to question 40.”
So I find myself going line by line with an endless succession of “nevers”. Eventually, it gets ridiculous. They ask if my six year old can drive a car or hold a job. After the depressing task of confronting all the things – both relevant and nonsensical to his age – my son can’t do, I decided to send a note in with it last year that expressed my unhappiness over the process.
Of course, the school was very nice about it. They always are. His teacher and school psychologist called to ease my mind. After all, there was literally nothing they could do but let me vent. The next year, when they sent the same old form over, they included a note reminding me that this didn’t take into account what a wonderful boy my son is.
It was a nice gesture, but it still remains one of the hardest and strangest things about being an Autism parent. It’s not about saying your child has Autism. Sure, that can be jarring the first time, but that’s ultimately repeating what someone else told you. That’s not what this is.
It’s addressing your child’s needs in the rawest way possible. There’s no pretending, as parents sometimes do. For many, it’s confronting worries you had and learning that there were missed milestones that you didn’t even realize had been missed. You have to be completely transparent to get your child the best possible care. The early moments many parents get to exaggerate to a willing audience of family and friends aren’t part of the equation. There’s no box to fill in that says “maybe said a word last week”. No. You fill in “never”. Because deep down, you know that’s true.
We still have those private moments though. Lucas will often surprise me with something that sounds like a word out of the blue or a response I wasn’t expecting. I clap and hug him. It’s a moment for us. We might tell family or friends, who love hearing things like that. Deep down, though, I wouldn’t say he always does it or even sometimes he does it. He did it this time. That’s good enough for me in that moment.
Life, though, is full of so many other moments besides those. The interactions we have and the wonderful memories we create aren’t limited to a checklist of expectations from my world that he has to meet. I’ll never stop loving him and that’s the only never that matters.
I’m just going to say it. Hopefully you don’t get offended, but we have issues. You. Me. All of us.
Even if you consider yourself to be the most well-adjusted person to ever walk the Earth, there are things in your past that shaped who you are today and they’re not all positive. Those memories or situations are unique to you and separate you from others. Those, in a nutshell, are your issues.
You don’t have to have been locked in a basement for 20 years to have them. Sometimes it can be a cross word from a teacher or a terrifying camp counselor insisting you let him bite your ice cream first “to make sure it’s not poisoned.” It’s a long spectrum that includes things some people would consider tame and things that others would consider deeply traumatic. Regardless, if they’re moments that personally affected you, you feel it more than anyone else can realize.
People are aware of this and talk about it all the time. In many cases, they can actually pinpoint where some of their altered thinking started.
Hey. Do you want the last egg roll?
Yeah. When I was a kid, my uncle told me that they’re made out of human skin.
To a kid navigating life, any words or actions by adults seem like clues into how the world works. Insane statements and crazy behavior can make a child think that the entire planet follows suit. Tell them that everyone around them is evil and they’ll think the whole world is evil. To them, it is.
Sometimes baggage isn’t as lighthearted as an egg roll. You drag it with you every day like an invisible backpack. It pulls you down and forces memories to spring into your mind when you’d rather focus on anything else in the world. Standing on line at Starbucks can quickly turn into an internal film presentation of awful events from when you were in third grade. When you’re rocked back into reality, it sends your head into autopilot. You force out a smile and order your Venti whatever. No one suspects a thing.
We interact with each other all day while holding these bags on our shoulders. It affects our motivation and changes the reason behind why we do the things we do. To someone else, you seem very dedicated to changing the bed sheets because you’re want things to be nice. To you, you are very dedicated to changing the bed sheets because no one ever did it when you were a kid and you slept on bugs. Same outcome. Very different reasoning. No one knows it but you.
Me – I have a lot of issues. I’m aware of that. I’ve been aware of that for a long time. I also know that I now have children and, if I’m not careful, my issues can become their issues.
Most of our own baggage is the product of someone else’s baggage. That teacher who called you fat in fifth grade? She was called fat when she was in fourth grade. This goes on and on through time. Many confusing and scarring memories for a kid can be attributed to an adult who was dealing with their own confusing and scarring memories from when they were kids.
That’s the slippery slope, though. It’s the mentality that things were worse for you as a child, so the things you do now don’t count. It was like the time that I said the “F” word around Olivia. While I had accidentally cursed in the presence of my nine year old before, this time it was done without care and, while I didn’t curse at her and never have, I still felt pretty bad about the fact that I was so cavalier about using it around her. Afterwords I went to talk to her about it.
Hey. I’m sorry about what you heard me say this morning.
What? The F Word?
That’s OK. You say that all the time.
All the time? What was she talking about?
All the time? What are you talking about? How often do I say the F word around you?
She shrugged and guessed.
I don’t know. Once a month. Something like that.
Of course, growing up, I heard that word all the time from many different people and many of those times, it was directed at me. I vowed to not say it regularly in front of my kids. Yet, here we were. To me, saying the F word once a month was a great achievement. To her, it’s “all the time”. I’m sure some of the adults who spouted it off regularly when I was a kid heard it much more often and from many more people than I did.
We all can recognize that. As adults today, we know that some of the grownups from our youth could have handled things better. It’s obvious. Maybe you work through the memories. Maybe you let them sit there. Either way, you know that your mind is littered with thoughts that begin with “when I was a kid…”
I’m not the kid anymore, though. I’m the adult. There’s a whole new generation and, as crazy at sounds, one day we’ll be the dead grandparents and foggy memories they quote towards the end of the century. We’ll be the reasons behind their apprehension to egg rolls or Starbucks daydreams. That’s how it continues on.
Do I “F” up sometimes? Yeah. I do. We all do. The one thing I’ve always made sure of is that I never tell my kids a rule of life that has no other reasoning besides, “that’s how it was for me when I was a kid.” That’s it. If I can’t, as a grown up, figure out the logical reasoning behind a lesson I’ve held on to since childhood, I don’t pass it on to my children.
Make sure your kids understand why they’re punished and why certain lessons are important to how they interact with the world. While you’re at it, make sure you understand too. The adults who shaped your childhood could have been wonderful or they could have been horrible. It doesn’t matter. You have no control over them. All you have control over is the adult who shapes the childhood of this generation. It’s you. Shape them to be all the good things you are today and leave out any of the issues you have stashed in your heavy backpack. Neither one of you need them.
I was peeling sweet potatoes in the kitchen when I heard my wife call out.
Uh…who left a can of soda on the dining room table? Because now it’s everywhere.
I looked over to see my now-former beverage slowly turning into a dripping mess all over the floor. With a confused look, I asked a question that would have been ridiculous a year ago.
How did it get knocked over?
My wife, in a sarcastic tone and a give-me-a-break look on her face, repeated my question back to me. She said it in a way that turned the reason for my question into the actual question.
How did it get knocked over?
As the words spilled from her mouth like Diet Pepsi onto our tiles, Lucas wildly ran around her in circles. He had his iPad, blasting ABC Mouse, up to his ear and was bouncing all over the room like a pinball machine as he laughed along to the songs.
It’s long been known that my non-verbal son turns TV into a full contact cardio workout. His propensity for running at top speed during his video watching is the stuff of legends. When he first started to walk, it pretty much became his gimmick. No matter the structure, he knocked it over. No matter the drink, he spilled it.
Yet, here I was – shocked that he had spilled it. And, in that moment, I couldn’t be prouder.
Yes, you read that right. As I bent down on my hands and knees with a paper towel to wipe up what I was pretty sure was the last can of soda in the house, I was beaming with pride. It was bizarre. All I could think was that it had been so long since he knocked something over that I had forgotten that he even did that sort of thing.
My son’s ability to avoid smashing and crashing into things in our home didn’t happen overnight. At first, it was an insurmountable obstacle that I almost felt silly asking his teacher about. After all, if it was done out of spite, it would be easy to correct. It wasn’t. Lucas does almost nothing out of spite. He never wanted to knock down your Lego house, but if it was standing between him and the big screen TV’s presentation of Elmo’s World, then it was bye-bye house.
I expressed that concern to his teacher and the response was so simple that I felt silly for never thinking about it.
Why don’t you and your daughter set up things that you know he’ll knock over like a giant block tower in the middle of the living room? Then you all could pick them up together. He’ll learn not to do it that way and she’ll probably think it’s fun.
It was one of the best pieces of advice we ever received about Lucas. Olivia and I would construct massive towers of blocks in the middle of the room and then put on one of his favorite TV shows. As soon as it would begin, Lucas would come tearing into the living room and knock it all down like the Big Bad Wolf. I would pause the show and all three of us would laugh and pick up the pieces. We called it playing “Godzilla”.
From that point on, I made him pick up everything he dropped. Our remote controls, which are basically broken pieces of plastic that you have to hit with a hammer to change the channel with at this point, were regular victims of Godzilla. They would be knocked off tables or countertops or any other spot more than half a foot from the floor. When it would hit the ground and the batteries would spill out, I’d stop what we were doing and make him pick up each piece. I remember thinking how adorable he was in that moment, searching and carefully picking up each battery, but I stayed professional. When he handed it back to me, I’d always tell him he did a good job.
Thank you, Lucas. Good work.
Yet, throughout all of that, here I was a year or two later wondering why my soda was knocked over. All of that work on the task that seemed impossible to fix was now mostly finished. In fact, I’d say he and I are pretty much tied for the amount of stuff we accidentally break or spill in the house.
No one notices that though. Sure he’s not knocking things over on a regular basis, but you don’t notice things that people don’t do. You notice what they do. No one ever says, “That’s really good the way you didn’t hit that car when you parallel parked just now.” Nope. But smash into a few Toyotas and suddenly everyone wants your insurance information.
The fact of the matter is that one day, Lucas stopped randomly barreling through things in our home and we didn’t even know it. Chances are we were focused on some other task. We’re all constantly moving forward so we sometimes forget how things were in the past. One day, we’re complaining about spilled drinks as we pick them up. The next day, we’re not constantly wiping up spilled drinks…but we don’t realize it because we’re too busy dealing with what’s coming up next.
It wasn’t until Lucas spilled my soda that I remembered how far we have come since the days of destroying Magnatile mansions and uncovered cups of water. That moment, which seemingly should have sent me into a frustrated fit of eye rolling had the opposite effect. It reminded me how hard he had focused to overcome this issue and how we had all worked together to make it happen. In this small moment that could be seen as a failure, I saw nothing but big-picture success.
I’m proud of him for learning to watch his steps and stay aware of his surroundings. It might sound strange to a parent of a child who never struggled with this, but it’s our reality. In a world of baseball trophies and Honor Rolls, they don’t make bumper stickers that say, “My Child Didn’t Break My Daughter’s Barbie House Today”. Essentially, you don’t get many chances to brag about how your child stopped smashing the things in his path.
Until now. That’s kind of what this is – me telling the world how proud I am of my boy. It may not be a major thing to those outside our house, but to us, it’s all his trophies and honors rolled into one.
A few months back, I was walking Olivia home from school when we passed an older woman walking a small dog on a leash. As we approached, he began yipping and tugging her forward to get closer to us. It was pretty adorable.
When things like this happen, the owner will usually try to hush their pet or tell us how friendly he is. That’s what I was expecting when she opened her mouth and began to speak. What I didn’t expect was this:
Look at that. All the time. Ever since you were five years old, he’d always do that. Yip yip at you. All he wants to do is play with you. Ha ha. That whole time.
I responded with a polite, “Aw, such a cute little dog.” Olivia said nothing. The reason why? We both had no idea who this woman was.
As we began to walk in opposite directions, my daughter turned her head to me, contorted her face into a weird look, and, in a pretty loud voice, let out a comedic…
Yeah, sometimes I’m convinced that the nine year old girl who lives in my house is actually Jerry Lewis in disguise. Keep in mind, the woman was literally ten feet away from us at this point. Without missing a step, I leaned in, nudged her arm, and gave her a look that spoke volumes.
Proving that my Jerry Lewis theory was wrong and she actually was a nine year old kid, she followed up with the worst excuse ever.
Oh, Daddy. I wasn’t making that sound about the lady. Ha ha. No. I was thinking of something else that happened today.
Rather than play some roundabout reverse psychology guessing game for an hour, I opted to be straight forward. My blunt answer wasn’t what she was expecting.
No. That’s not true at all. You made that sound because we have no idea who that woman is.
She broke into hysterics and made a face that showed she knew she had been caught. That’s when I got all Ward Cleaver on her.
You have to remember, though. That lady might have a life that’s not as fun as ours. Maybe she sees us once every few months while walking her dog. It’s not a big deal to us because we forget about it, but maybe it’s a big part of her day. Maybe she doesn’t have anyone else in her life. So while it might seem strange to us, she’s just being nice. So we shouldn’t make her feel bad, right?
I didn’t think much about any of this until I started to get older. That’s the only time when it becomes relevant. When you’re young, everything is monumental. Most of your friends have been there since you can remember. Every fight is a war. Every crush is a romantic love affair. Every misstep is a Greek tragedy. As time goes on, though, you realize that it’s all a matter of perspective. The most important moments to you might mean nothing to someone else and the times you forgot all about could be something someone else holds on to forever.
It’s why you see so many people rolling their eyes at “dramatic” teenagers. It’s not that they’re being dramatic. It’s that they still think that not getting invited to Cheryl’s birthday party is the end of the world. They still haven’t hit the age where they run into Cheryl at the supermarket with her two kids and accidentally call her “Carol”.
This is the type of lesson you only understand as life plays out. It’s showing up to a wedding of an old friend and being excited about seeing someone there. Then, when you show up, they seem like couldn’t care less. It can make you feel pretty bad and, the first few times these scenarios play out, they can feel confusing.
On the other side of the coin, I’ve had old acquaintances run up to me with stories of wild unforgettable times we had together. They retell memories from days gone by as if they happened yesterday.
Hey! I was thinking about that time you and I were hanging on the back of that jeep and pretended we were surfing. Then that guy yelled at us to stop! Oh man. I was just telling me wife about that yesterday.
Yeah. That was a lot of fun.
That’s a better response than, “I have no idea what you’re talking about. I don’t remember ever hanging out with you. Are you sure that happened?”
Most of us experience this from both perspectives and it tells you a lot about life. It’s a reminder that the memories we replay in our mind to our detriment might not even matter. All the mental thrashings we give ourselves over mistakes from long ago could be memories that no one else has retained.
The same can be said about positive memories too. Just because it was the greatest summer of your life doesn’t mean it was the same for all the others you shared it with. That doesn’t mean it shouldn’t be a treasured memory. It just means that it’s primarily your memory. They all are. If someone else who experienced it doesn’t feel the same way, it shouldn’t make it any less special.
The biggest lesson I take away from all of this is to watch my moments. I try to make sure that the way I interact with others is a way I’m proud of. I’m not always successful but I make a genuine attempt to remember that snapping at a co-worker or friend might feel justified in that moment because you’re having a bad day, but it could also be a moment that they never forget.
You can say the same for positive moments too. It takes very little to brighten someone’s afternoon. A positive word or a kind action can take all of ten seconds but define how that person sees you from that point forward. Then again, it might not. You never know what moments will truly stick, so it’s best to try and make them all as positive as you can.
In the end, though, it doesn’t make a difference if people remember or not. The memories aren’t the main reason to treat others with kindness. It’s to make the world a nicer place for you and those around you. That’s good enough for me.
I didn’t need to take a test to be a parent. No one made me fill out a questionnaire or pass a background check. I actually had to jump through more hoops to get my library card than I did to have a kid.
Not only that, but I also didn’t need to do anything to become an “Autism Parent”. It was the same routine for my son, who is non-verbal and on the spectrum, as it was for my daughter, who is non-stop verbal and not on the spectrum. I simply became a dad. Everything that came after was part of the experience.
That doesn’t stop others from making reverent generalizations about the parents of children with Autism or any special needs though. The idea is that we’re special or “super“ in some way. The mere fact that we are there for our children, who might require different care than others, is enough to elevate us to a pedestal that doesn’t always feel appropriate.
I was reminded of this while watching a cable drama a few months back. In order to avoid spoilers, I won’t tell you the character or show. The gist, though, was that our star, fresh out of prison, was having confusing flashbacks of being tortured by an unhinged guard. Throughout the unfolding saga, the audience is left wondering if the memories are real or simply manifestations of the man’s madness.
Upon his release, our main character heads straight for his alleged antagonist’s home. As he arrives, a young boy answers the door. Without making eye contact, the child demonstrates many stereotypical signs of Autism and speaks in very few words. When he becomes upset over the man’s presence at his doorstep, the boy is comforted by the possibly torturous security guard – shockingly revealed to be his father.
As the confused former prisoner dramatically reels back to watch the scene unfold, we’re all supposed to view it the same way he does. We’re supposed to say, “Wow. This guard is so nice. He’s comforting his special needs child. There’s no way he could ever torture anyone.”
Which, by the way, is complete nonsense.
Look, I’m going to be honest here. I don’t torture people, but that’s not because I have a non-verbal child with Autism. It’s because I know I’m not supposed to torture people. The two aren’t mutually exclusive. I know plenty of parents who love their children…and who I can also totally picture torturing people.
If I’m going to be frank, I see my care for Lucas as an almost selfish thing. I don’t consider it doing a good deed or generating positive karma. He’s my son. I made him. He’s a part of me. Any good I do for him, I do for me.
Even if you take the biological aspect away from it, an Autism parent’s child – whether by birth or other circumstances – is still their child. There’s no need for applause. It’s not “babysitting” when it’s your own kid. It’s life.
What I do for Lucas is because I love him and I’m responsible for his happiness as any parent would be for any of their children. Not just that, but I chose to bring him into my life. He didn’t mail us a telegram asking to be born or send a friend request to join our family. We decided. We brought him here. So being there for him is just part of the whole family thing. Making sure that he feels safe and cared for is the same responsibility that I have for my daughter and my wife. Heck, you can even throw our cats into that group too. No one is calling me a “hero” for petting them even when I’d rather be left alone to watch TV. We’re a family.
Caring for a child with Autism or any other special needs does require different attention and, while I appreciate that people might realize that, I don’t think it makes me someone unique or super human.
I don’t need applause. To be honest, if anything, I just need understanding at times. I need people to understand if we’re late to a function or if I have to leave early with my son. I need them to see that we can’t always go to the events we wish we could go to or drag him to the boring grown-up things that other children could quietly sit through with a picture book. It’s more helpful for people to understand those things rather than admiring me for doing them. And, honestly, I say “need”, but I don’t even need people to understand those things. To put it bluntly, I don’t need anything. I’m parenting just like everyone else. No more, no less.
Can the responsibility of caring for a special needs child soften or change someone? Sure. Are there people who can alter their view of the world through this experience? Absolutely. Does having a child with Autism automatically make someone an angelic gift of patience to the world? No. No it doesn’t.
As parents, we make promises to the universe that we’ll keep our kids safe and love them unconditionally. Your child doesn’t have to have Autism in order to produce stressful and frustrating moments for you. Kids can wrap you up in knots whether they’re on the spectrum or not. It’s the type of thing they’d make you pass on a test before letting you have kids…if they did that sort of thing. But they don’t. You have kids. You love your kids. Autism or not, that’s what real parents do.
Any parent can become an Autism parent. When the time comes, they step up to the plate as best they can and love their child with all the enthusiasm they can muster. If they can’t do that, then Autism was never the issue. It just means they never were a real parent to begin with.
I was walking Olivia to school last year when I found myself explaining income taxes. I knew she was eight at the time, but I still figured that information might come in handy one day. I also figured the window on her listening to me for long periods of time was closing. So now was my chance to drone on. She was kicking leaves and half-paying attention.
If you tax people, you have to let them vote on things. There was a famous historical event about that.
She stared blankly at me.
During the American Revolution. In Boston?
Then, almost in one breath, she shouted.
The Great Boston Molasses Flood of 1919!
I began laughing so hard that I fell to one knee. I had never heard of the Boston Molasses Flood of 1919. In that moment, I thought she had made it up. It was such a detailed answer that it slapped me across the face from left field. It took my ears a second to process what she had even said.
I tried to compose myself as I knelt down on the side of the street. She was now in equal hysterics.
Did you make that up?
Ha ha. No. We learned it in school. It’s a thing.
So I Googled it and, yup. It’s a thing. In fact, it was a pretty serious thing and, despite being humorous in the moment because it was said unexpectedly, there’s nothing funny about the actual tragedy itself. Basically, a company transporting molasses filled a tanker past capacity and it caused an explosion that flooded a neighborhood, killing 21 people. It was shocking and, until Olivia said it, I had never heard of it.
Of course, we’re glossing over the fact that no one had taught this kid about the Boston Tea Party yet, but that’s beside the point. Taxation without representation aside, I was pretty impressed with her knowledge of obscure and interesting historical events.
In the weeks that followed, the Boston Molasses Flood of 1919 became a topic in our house. We watched Youtube videos describing it and tried tolearn all we could. We were becoming experts. When people who never heard of it would come by, Olivia and I would go into incredible detail.
You never heard of the Boston Molasses Flood of 1919? Want us to tell you about it?
I’d watch her eyes light up as she jumped in with a fact I may have missed.
They filled the tank so much that people could hear it creaking!
Then, around Christmas, we decided to go on a road trip to Boston. The kids had never been there and it was within driving distance, so we started to make our plans. I asked Olivia to think of some things she might want to do there. Almost immediately and with the same one-breath delivery used when she first told me about the flood, she blurted out:
The Great Boston Molasses Flood of 1919 Memorial!
Wow. Was there one? She said it with such certainty. So I asked.
Is there really a Great Boston Molasses Flood of 1919 Memorial?
I’ll never forget her reply. She shrugged her shoulders and said.
There’s gotta be.
So once again, I turned to Google and once again it was there. An unassuming green plaque at the entry to a park. It looked like every plaque in every park, but it was like the Holy Grail for us. We made it our goal to go there.
And so we did.
There’s not much to say about our actual visit. It was more of a, “There it is. Let’s hop out of the car and take a picture” thing. The entire event took less than ten minutes and was book-ended by debates about where to eat breakfast, but it wasn’t about the event itself. It was about the fact that we did it.
I kept marveling at how we made our goal happen. I wanted to drive that point home to Olivia. It was something I reminded her of and framed the whole experience as a life lesson in addition to being a historic one. As we all drove off from the site, I made it seem like we had just climbed Mount Everest.
Hey, everybody. I’m proud of us. You, me, Mommy, Lucas – we’ve been talking about it for a year and now we saw it. We made it to the Great Boston Molasses Flood of 1919 Memorial!
A four hour car ride wasn’t the biggest conquest of our lives, but Olivia didn’t know that. I could see in her face that she was pretty proud. It might not have been Everest, but to her, it was.
The most amazing thing is how easily it all could have never happened. Had I just brushed her reply aside like an arrogant grown-up and began lecturing her about the Boston Tea Party, chances are she would have listened, nodded, and then moved on. That didn’t happen.
Don’t misread that statement either. I’m not saying that I’m such an amazing parent that I would never do that. It’s the opposite actually. There’s actually a very good chance that I could have done that. That’s what’s so great about it.
In an effort to fill her head with knowledge, there are plenty of times I can drone on to my daughter’s dead ears. That day could have been one of them. After all, the whole story started with me lecturing about income tax while my disinterested third grader kicked leaves down the road.
Luckily it wasn’t. We grabbed that one passing moment and turned it into a lasting memory. Sometimes that’s all it takes.
My son has priorities after he gets off the school bus and they usually don’t include greeting anyone already in the house. Being non-verbal prevents us from having conversations about how his day went, but it’s not just about skipping a chat. When Lucas comes home, you get, at most, a passing wave. He has just one thing in mind and it’s very important.
He rushes in from front door and whips past anything in his way to get to either his iPad or the television. We slow him down to get an obligatory hug but that’s all academic to him. His main focus is on getting his eyes on some form of Sesame Street style entertainment. As soon as his show starts, it’s like Mardi Gras in our living room.
Lucas starts laughing and clapping with a torrential downpour of enthusiasm. With each hit of his hands, he jumps so high that it looks like he’s ready to fly away. The whole scene is right off the Price Is Right.
Instinctively, something inside me says to calm him down. My first thought is to put a hand on his shoulder and say, “Relax there, buddy.”
But why? Why would I tell him to do that? Sadly, I’ve thought about it and there’s only one reason I can even remotely come up with.
It’s because I’ve been telling myself that for my whole life.
I mean, let’s be honest here. Who doesn’t want to do that? Who doesn’t want to come back from a long day of shopping or work or party with acquaintances and run into the house with a beeline towards the remote control? I’d love nothing more than to push aside pressing issues and questions about my day in favor of getting to that one thing I had most been thinking about the whole time.
Then, when that TV goes on, I’d love to jump in the air and shout my happiness from the rooftops. I want to squeeze every bit of joy out for all to see and embrace the fact that, after a long time away, I’ve returned to what I wanted to do most of all. I want to scream, laugh, and jump with each clap. “Yeah, baby! I’m watching TV! Finally!”
But I don’t. I don’t because people say you’re not supposed to. Sadly, I’m one of those people too. Internally, I tell myself to cool it before anyone else has to. That would be embarrassing or something.
My son doesn’t, though. He gets to react the exact way he wants. His happiness is the purest I’ve ever seen. It’s not a forced smile while unwrapping an As Seen On TV gift you never wanted or a polite grin over an unfunny joke. No. This is jubilation in its purest form.
And my first instinct is to have him tone it down. That says a lot more about me than him.
Lucas does everything I wish I could do. There are no hang-ups about social pleasantries. For instance, while watching a wrestling video, I might want the uninterested others in the room to see my favorite parts. So, I will begin a growing wave of nag that goes something like this:
Hey. Watch this one thing. Are you watching? Hold on. Right here. He’s going to do it. Watch this. Are you watching? You’re not watching. Watch. Look. It’s happening…wait. You missed it. Let me rewind it. Here. Look. Watch this. Are you watching? Look. Look up. Come on! You missed it again!
This happens more times in my life than I’d like to mention. Few things make me feel dumber than moments like that.
Do you know what Lucas does when he wants me to watch a part of his show? He will come over and begin tapping my shoulder. If I fail to look at the screen, he will turn his body towards me until we’re face to face. Then, he will hold his iPad up for me to see. He does this roughly every five minutes throughout some of his favorite videos. Guess what else. I watch every moment that he wants me to.
I get that there are parts of my world that he might not fit into. That’s fine. Honestly, though, I look at the way he sees the world and I wish I could fit into his more easily instead. He might not speak and has struggles that I wish I could take away and put on my own shoulders, but overall his view of the world is so much purer than mine has ever been.
He reminds me what is important. I’ve had times where I was sitting at my desk thinking about something miserable or feeling sorry for myself. Trapped in my own head, I’d mentally beat myself up and do guilt-based gymnastics over whatever was weighing me down. Seeing me there, Lucas will come by and put his hand on mine.
…Then he will lead me from the chair and into the kitchen, where he’ll then place that same hand on a box of Ritz crackers and double tap his chest to ask me to give him some.
This has happened on more than one occasion and it never ceases to knock me for a loop. It’s like, without using words, he’s telling me, “Yo. Stop frowning. Let’s put some crackers in our face. It’ll make us happy”
So we do. And it does.
Sometimes he’s not there for food. Sometimes he makes me get up and dance along to “Shake My Sillies Out” during his eternally playing Raffi concert or something similar. Either way, it’s rare that I leave an interaction with Lucas without smiling a little bit more than when I went in.
The truth is that he is not at a point where he thinks deeply about regrets in life or worries about being reserved over his excitement for TV shows. I’m kind of okay with that, though. In fact, I’m pretty happy about it.
As a parent, my goal isn’t to place my son above or below anyone else in the world. It’s not about speech or getting him into Harvard or marrying him off to a magical princess. My main (and only) goal is to make sure he’s happy. He is. That much I know for sure. So I’m happy too. No matter where he goes from here, as long as he always holds on to that love of life, I’ll know I’ve succeeded.
I was ten years old in 1987 and pretty obsessed with professional wrestling. One of the most hated stars of the WWF at the time was “Adorable” Adrian Adonis. He was a devious dress-wearing villain with a gimmick that didn’t age well hiding behind his personal bodyguard, “Ace Cowboy” Bob Orton. In typical over-the-top wrestling fashion, Adonis gave his evil henchman a futuristic nickname.
The Super Bodyguard of 1995!
It blew my ten year old mind and I can still remember the first time he said it. Wow. 1995. It was a far-off year that I had never even thought about. I immediately started doing the math in my head and realized that 1995 was the year I was set to graduate from high school. As a fifth grader, it felt like a ridiculous amount of time away. It would never be 1995.
Then, one day, it was 1995. The years between hadn’t gone by quickly or slowly, but they went by and I was there every step of the way. This insanely far amount of time was behind me and I was now graduating from high school. Adrian Adonis had long since passed away and I was living in the future world that he spoke of. If I’m being honest, it felt a lot like 1987. The day by day passage of time seemed to help with that.
But that could be because 1995 wasn’t such a big deal. Nah. The year 2000 was the big one. That was always the future to kids from the 1980s. Every futuristic toy they sold to us ended with the number “2000”. Spaceships, laser guns, video games, and all the rest were branded with that date long before I was ever born and we had all been patiently waiting for that magical day when we no longer had 19s printed on our checks. We were entering the time of the Terminator and Marty McFly’s kids.
Then, one day, it was the year 2000. The clocks changed and we were living in a new millennium. The Y2K worry was a bust. Computers didn’t explode. Airplanes didn’t tumble into the sea. So that was good. Of course, there were no flying cars or Rosie Robot maids, but you take the good with the bad. Life went on. It was totally the future and we were living in it. The year 2000 had come.
Honestly? It felt a lot like 1995…and 1987. It all just felt like, well, now.
Time moved on and I moved on with it. I saw famous court cases from my childhood become so old that the prison terms ended. I watched regular people become famous and famous people become regular. I witnessed legacies crumble, icons die, and truths come out. It just kept happening.
I found myself making plans for years even further into the future like 2005 and 2008, only to see them come, go, and become memories. Before long, I found myself marveling at the year when I say it out loud.
2018. What the heck?!
Right around the turn of the century, I remember going online to look up when people would start referring to the year with the traditional “twenty” instead of “two thousand and”. According to one of the resources I found, it would all definitely change by 2020.
I remember laughing when I read that. 2020? No way. How is that a real year? What is this? Star Trek? Now it’s less than two years away.
While what I’m saying here applies to everyone over time, I definitely feel like it’s only those who lived through that transitional phase from 1999 to now who felt it the most. For us, the entire date changed on that one day. Every single number in the year moved. That won’t happen for another one thousand years and we lived through it. People had been anticipating it for hundreds of years. The dates from our lives look like dates from science fiction novels dating back centuries.
The future to kids born today is around 2050. Blah. It doesn’t have the same “oomph” as a the complete odometer turnover that we experienced. Even when things turn to 2100, it won’t be the same.
So, what does all this mean? Well, it means that I live in the future. It means that all of us live in the future. Time is always going to move on and, provided you stay alive, you’re going to move with it. When you do, the future will feel a lot like right now. It’s because it will be.
It makes me think back to all of the worry and anxiety that never really made a difference. The scenarios in my life that seemed insurmountable were eventually, well, surmounted. No matter how down I’ve been, I’ve managed to survive and come out the other side.
We all have. Every time. Maybe you took your lumps, but if you’re able to read this right now, you made it to this moment. You survived. Don’t forget that.
If all goes well, I’ll be here next year, the year after, and hopefully even the quasi-futuristic 2050. Whatever I have to go through, I’ll go through. I’ll live in the future until I don’t anymore. When that day comes, I too will be a memory. I’m good with that and it’s why I’m going to enjoy every minute of now while I can.
We took a family trip to Boston over the holidays. While walking my son through the hotel lobby, my wife passed a bellhop who said to Lucas:
Hey there, buddy.
When he failed to get a response, the bellhop jokingly took it personally.
Oh. You don’t want to say hi to me?
To this, she replied.
He doesn’t speak. He has Autism.
Then they walked on. No long discussions. No educational seminar. Not every mention of Lucas’s Autism has to turn into a learning experience for someone. It just is what is. Sometimes that’s all that matters.
Years ago, a response like that would have been unheard of for us. After all, it would have been easy to just smile at the bellhop in a way that says, “Yup. He totally hates you, dippy” and continue walking. What difference would it make? Who is this guy anyway?
I think that’s the main differentiation that needs to be made here. In his younger days, we didn’t withhold our son’s Autism out of misplaced shame or sadness. It was more of a, “What business is it of theirs?” type of thing. Why bother telling a bellhop we’ll never see again?
It was different then, though. Up until that time, Autism had been silent thoughts that turned to quiet whispers around our home. It was a private matter that we saw as something we were privately handling. Today, it’s a part of our lives and my son is part of the world.
I had seen Autism as a serious and secret word in my mind. It brought up stress and sadness and loss and fear and a million other heart-wrenching emotions that weren’t based on anything concrete. It wasn’t until I began to tell others outside of our inner circle that the word lost some of that mystique. Soon it was just another aspect of our lives and categorized along with all of the other quirks in our family.
I actually remember the first time I joked about it. It was when Lucas was around three and we were preparing to go to a party. I said we should tell people that he’s very politically active and the reason he doesn’t speak is because he’s vowed to keep silent in protest until those being oppressed around the world were given their chance to speak. It lightened the mood at the time and I still laugh about that one in my head.
Lucas shares jokes with me too that center around his behavior. In fact, humor seems to help us get ahead of some difficult times. If I’m able to predict an upcoming tantrum, say at bedtime, I will do it myself before he can. With an outstretched hand, I will call out, “Time for bed!” Then I will suddenly drop to the floor with my arms outstretched and let out a loud cry. It’s identical to what he was planning on doing and, seeing me do it first, will cause him to stop short and laugh his little head off. It gets him every time.
His personal favorite (but not really mine) is my head hit game. When Lucas doesn’t want to do something like cut his hair or hear a certain song, he will make eye contact and tap his head. If you continue to do it, he will hit his head even harder. That’s usually when I immediately spring into a panic and try to comfort him. I always hated it and, while I was happy that he was trying to communicate, I was unhappy with how hard he was hitting himself in order to make his point. So, like bedtime tantrums, I got ahead of it by taking away the serious nature of it all.
One song that always brings on a tap is Raffi’s Little Red Wagon. He doesn’t want me singing it for some reason. Knowing this, I turned to him one day in his room and began belting it out with the familiar opening of, “Bopping up and down in my little red wagon…”. However, just as the sentence ended, I loudly slapped myself in the head exactly as he does and fell to the floor like Ric Flair taking a chop to the throat. As I stumbled back to my feet, I kept singing, and did it again. He loved it. To this day, the hard head slap has become more of a funny thing that Daddy does rather than a scary thing that Lucas does.
Without taking away the heavy-handed tone of Autism, that wouldn’t have been possible. I would be too tied up in knots over the fact that he’s his hitting his head than trying to change it in a funny way. It’s the ability to speak freely about this behavior that we once categorized as heart-wrenching that took away its power. At least in my house, being open about Autism is how we really break through.
Being able to do that comes with familiarity. It comes from being open to strangers like that bellhop and not holding back even when it makes for awkward moments…kind of like that time I had to call Verizon because my cable box wasn’t working.
Lucas was in the living room, watching his favorite Raffi concert and screeching like it was his job. His high pitched shrieks, which everyone living in my house has become accustomed to, filled the air. We could hear him in the background of my customer service call.
OK, Mr. Guttman, we’re going to get our tech team looking into that cable box for you now. Just doing a few tests. How are you today?
I’m doing well. Thank you.
Yeah. Say, do you have birds?
Birds? No. I don’t have birds.
Really? Are you sure? I, uh, think I hear some birds back there.
Oh that? No. That’s my son. He has Autism and he’s screaming while watching a show he likes.
Yup. So…Any word on those cable box tests?
To this day, it still surprises me that he asked if I was sure I didn’t have birds. I don’t know how he thinks that could have slipped my mind. Either way, the moment might have been awkward, but not for me. I’m good. The more open you are about something, whether to yourself or others, the less awkward it can be for you.
My son has Autism. He’s non-verbal. He might speak one day. He might not. I say those things out loud now. They’re not fears. They’re facts. I love both of my children for who they are. If Autism is part of who he is, then it’s one of the many reasons why I love him.
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