My Son is Autistic and You are Not the Victim

Let’s play a game. A drinking game perhaps? Go on, I’ll give you a moment to grab your beverage of choice… tea, coffee… vodka. I’ll even accept water if you just recently decided you needed to be more healthy. Do you have your drink? Are you ready? Okay. The game is ‘Never Have I Ever’ and if you don’t already know how to play, I say never have I ever been to Paris. If you have been to Paris, you drink. Got it? 

Okay. Never have I ever had to apologize for my child’s behavior. Did you drink? I can’t see, I’ll just have to take your word that you’re being honest. 

Never have I ever had to stop another parent from verbally or physically attacking my child. I’m drinking after all of my statements by the way. 

Never have I ever had to leave a family gathering or holiday because my child is overstimulated and offending the people around him. Never have I ever had to dry the tears of an adult because of something my child said to them while overwhelmed. Never have I ever had to explain to my son’s teachers that autism isn’t cured by a bucket of fidgets and a break corner and that by breaking his IEP they are sending him into a meltdown and no, they cannot blame him for it. Never have I ever been bit, scratched, kicked and punched by my child during a meltdown another adult caused. 

Never have I ever had to break down in anger and despair in the principal’s office because he had the school cop threaten to arrest my child and made no apologies for it.  

Wow. Good thing I was playing with water. How are you doing? I honestly hope you are fairly dehydrated at this point, but I know that my few examples are the “tip of the iceberg” and that instances like those are really not as rare as one would think. So to my fellow parents of any child, but especially environmentally challenged children, hi! I am so happy we found each other.

And if you are not the parent of an environmentally challenged child and really have no clue what I am talking about, but have stuck with this article out of sheer determination to finish it if nothing else, I am so glad you are here as well! I hope that you enjoy reading my blog and that, at the very least, you laugh and cry with me. That you walk away with another perspective on life and that, at the very most, you are able to use that new found perspective to make a difference in someone else’s life. That sounds like an epic task for just one person but honestly, it could be as simple as lending a smile to someone as they are comforting their child, or listening to someone on the spectrum with 100% of your attention, or just not judging while you’re in public and that “bratty” child over there is loud and you “would never let your child get away with that.” So see, easy peasy.

Anyway, raising an environmentally challenged child is like being Team Jacob when everyone is Team Edward (Twilight reference people, just roll with it). Sometimes the only side of your child other people are willing to see is the side that is underdeveloped and confusing. They only see your child’s screams when he “doesn’t get his way” or the kicking and hitting when a ride scares him at the fair but he won’t explain it to you. They only see the back talking and the disrespect and not the severe anxiety that motivates it. They only process the yelling and aggression and they don’t hear the sound of twenty other kids’ snow pants rubbing against each other in the hallway at school that sets him off in the first place because, sometimes, sounds do that. And no matter how much you explain it to them, they will never ever stop blaming your child.

Have you noticed that when a friend, family member or teacher (not all, but 95% of the ones I have had experience with) report to you what happened it’s always negative. For example, from his school IEP (Individualized Education Program) team you get “Jimmy won’t go to fifth period math anymore. He only does his math homework in the behavior room and yells at me when I tell him he needs to go to math class, or that he needs to check in with the math teacher before he works in the behavior room. And today he tipped over a desk and I asked him three times to pick it up and he wouldn’t so I told him no recess and then he ripped up his math homework.” 

Okay, that’s one perspective. This is what I hear: something is causing Jimmy to have severe anxiety about attending math class, but I see that he is self advocating and choosing to still do the homework in an environment that not only causes less anxiety, but was always an acceptable option by school staff. Jimmy isn’t good at expressing that to you, so when you keep pushing him and won’t accept plan B (which is part of his IEP by the way) he gets angry and explodes, lashes out and tips over the desk, because Jimmy has a harder time communicating and regulating his emotions. Immediately he feels terrible for tipping the desk over, but at this point you have proven to show anger instead of understanding, so now he feels hopeless. As you keep ignoring his real needs in favor of discipline, he tears his homework apart because now, what is the point? He was really looking forward to going outside at recess and playing basketball, but now he is reminded about how much he hates school. He hates the teachers, he hates homework and he just wants to go home.

Don’t get me wrong, teachers are angels. They are overworked and underpaid and do more good than not, but when you have an environmentally challenged child, a teacher who not only has the education to handle said child, but also the ability to see from that child’s perspective and express empathy is a rare find. You are so lucky if you have found that teacher (or if you are one, thank you!). My son will be attending high school shortly and in his entire educational career, I have come across a teacher of this species twice. The third was a behavioral specialist on his IEP team. Terrifying stat, don’t you agree?

Any-hoot, if there is one message I would like to spread across the world it’s this: my son is autistic and you are NOT the victim. He doesn’t have it out for you, he has mistrust in a system that has wronged him time and time again. He doesn’t mean the terrible things he says, he was triggered by something so normal to you, you didn’t even realize you heard it, such as the buzzing of the overhead lights, the cry of a child in the other room or the scrape of a fork across a glass plate. He’s not throwing a fit because he doesn’t get his way at the trampoline park, he just had an altercation with another child, which lead to a fist fight (because they almost always do) and he can’t tell you through his anger and tears that he hurts, that he’s mad, and that suddenly the things that didn’t overwhelm him a moment ago are just too much to deal with now. 

It’s a full time job advocating for a person who can’t advocate for themselves, but you do it. You do it not just because you love them, but because you see who they really are. You see the side that is not underdeveloped or confusing. You see his big heart and caring nature, like when he found that baby bird that fell from it’s nest and he held it in his hand for hours, feeding it watermelon, until he could get it under a heat lamp for his uncle to take care of. He named him Billy. You see his cunning sense of humor, like when he makes you laugh so hard you can’t breathe and you are both just holding onto your stomachs, tears rolling down your faces, throwing puns back and forth at each other until everyone else leaves the room. You see his excitement to try new things, like when you both get inspired after watching Master Chef Jr., and you watch him create wonderful dishes, on his own, with an apron around his waist and a smile on his face. You feel how much love he has to give when he holds you tight, when he cries in your arms, when he kisses your cheek goodnight and tells you how much he loves you.  

Our children are amazing, aren’t they? Strong, hopeful, resilient little things. We need them as much as they need us, truly. But they need us to be the adults, to carry the weight of the world on our backs so that they have room to breathe, to grow, to learn. We need to be smarter and more intuitive to behavioral challenged kids (people) because we are not the victim of their behavior. They are. 

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