Family · Uncategorized

Autism Speaks… and screams.

My beautiful son, Trenton, is an incredible kid. He has blonde hair and blue eyes and he’s nearly five feet tall and weighs over one hundred pounds. He wears a size 14 husky pant and extra large t shirt, and size 5.5 to 6 shoe, depending on the manufacturer. He is so smart, when he wants to, he reads books that most seven year old children wouldn’t even pick up, and he adds numbers in his head like a little human calculator. He has an amazing sense of humor and an imagination that will take you wherever you want to go in the world. He is high energy, and on good days, he could motivate a Tony Robbins seminar better than Tony. He is a creative problem solver and is constantly curious about the world around him. In addition to all of these amazing characteristics of Trenton, he has a secret superpower… Autism.

I call it a ‘secret’ superpower, because until you spend time with him, you don’t notice his sensory ticks. You don’t see how terrified he genuinely is of anything going outside of his normal routine. His tantrums seem like fits of entitled rage, perpetuated by his father and I spoiling him. You don’t see his confusion about why people feel differently than he does, or why they don’t want to be tickled right now. You don’t see that he only slept about three hours because he convinced himself a ghost was in his room and no one could convince him otherwise. What you see, is everything I mentioned first, and your assumption is, he’s ‘normal,’ so when he responds in an ‘abnormal,’ way, you don’t know how to react.

I’m not upset with you, I understand how you feel. My husband and I had the same confusion. Except, unlike you, we couldn’t just leave the store or restaurant or doctors office and ignore his fit. We couldn’t trade him for a calmer child. We couldn’t convince him to love what we love, either. Our hearts were broken when he would tell us he hated us, or bite me, or hit me, or pull my hair because he felt trapped in his car seat and was trying to literally claw his way out. We were fortunate. We had a pediatrician who saw the signs early and directed us to TEIS. We were even more fortunate the TEIS coordinators they put us with loved their job, loved Trenton, and through their love, loved us too. They reminded us that we weren’t horrible parents and encouraged our decisions. They provided resources to us and made sure we knew our rights. I spent hours on google researching ADA, sensory disorders, and speech delay. We went to counselors and behavioral specialists, we spent thousands of dollars searching for answers that weren’t autism. We fought it until last summer, when it stared us in the face. He wasn’t growing out of this, this is who he is. For two weeks, neither me nor my husband could say, “I have a child with autism.” So how in the world could I expect a stranger to understand?

Oh wait. You have google too. You don’t live under a rock. Autism Speaks. It’s everywhere. The little puzzle pieces. The mantra, ‘Different, not Less.’ But, you expect Autism to look like a non verbal child, who waves his or her hands uncontrollably, or clearly isn’t ‘normal.’ This is where those assumptions are wrong. Autism is a spectrum disorder, meaning there are different ‘level’s’ of Autism, and every case looks different. It’s sort of like depression. Really bad depression could look like suicide, sadness could look like nothing to people who don’t know the person. So, I’m still not upset with you for not knowing, but I kindly ask, if you ever go into the public, please educate yourself or at least, don’t judge what you don’t know.

I digressed, I apologize. Back to Trenton.

He’s amazing. As amazing as he is, he has some struggles. For one, he has no empathy. None. At all. Doesn’t even try. For my husband and I, it’s the hardest part of his personality for us to work with. To give an example, when I was a child, one of my favorite things to do with my dad was go to a restaurant and pick someone sitting alone, and buy their lunch. I tried this once with Trenton and he genuinely did not understand why I would do such a thing. He was offended! He thought I was assuming that person couldn’t afford their meal, or I was spending money on them I could spend on him. We were looking for items to donate to Gatlinburg after the wildfires, and he didn’t understand why people couldn’t buy their own stuff. He asked me, ‘why would they even want my old stuff?’ As difficult and appalling as these questions are sometimes, my husband and I respond with love. We take our time to explain things a little more and ask him to really put himself in the shoes of the person we are helping. Sometimes, we have to create the situation for him, guide him through his thoughts and feelings, and then he will understand, although he will never feel the satisfaction that comes from giving to another. He will do it because we’ve told him it’s right and nice, but he won’t ever do it because it makes him ‘feel’ good.

He is sensory driven. 110% sensory driven. If he’s overstimulated, he panics. He has to escape by any means necessary. Scream, cry, kick, fight, bite, punch, bang his head into the floor, bite himself, it doesn’t matter as long as it gets him out of whatever situation has him overstimulated. If he’s under-stimulated, he gets aggressive, argumentative, he bangs his head into the wall, he bites himself or he flees. If he catches himself going to one extreme or another before it happens, he will isolate himself and hide. He has a heavy blanket at home that he likes, and at school he hides in laundry baskets in the classroom. His school is amazing at working with him. In public, it’s this behavior that is the hardest. We are working with him to learn more appropriate responses, to identify what he’s feeling and how he is feeling and develop other methods of coping. This is difficult with Trenton, because he is rational and logical, feelings are neither.

Jon and I have struggled with managing his Autism. We’ve had to grieve the life we planned for him to accept how it will be different because of his Autism. We’ve also had to allow ourselves to believe that he could potentially still have the life we wanted for him, if we work hard enough. We’ve also accepted that his life can be better than we ever imagined as long as he’s happy with where he goes and what he does. His choices for himself may be completely the opposite of what we would have chosen for him. We have faced the guilt of our choices. We fought medicine for a long time, so the first week he was on medication, when his teacher sent us a letter saying what a wonderful week Trenton had, we cried, believing we failed him. We fought the diagnosis for a long time, so when someone finally explained Trenton’s ticks, showed me the DSM5, and suddenly Jon and I both saw Trenton and understood him, we cried with guilt. Unless you adopt, you just don’t plan for a special needs child. They’re incredible and they challenge you. I, personally, battled the guilt that *I* was responsible for Trenton’s struggles because I did something wrong during pregnancy. I know now that I didn’t, but it didn’t make that feeling feel any less.

What makes all of this bearable is our unconditional love for Trenton. We prayed for a baby and he was the one God chose for us. When he hugs us, everything is worth it. When he says, ‘mommy, don’t say bad words, we are a family who loves each other so we don’t say bad words,’ it feels like maybe we’re doing something right. He teaches us about ourselves, every single day. He sees the world from a different perspective, which makes us better people. We love him, we believe in him, we support him, and we are thankful for him. Ultimately, he is healthy and we still have him. We are incredibly blessed.

If you are a parent with a child who has Autism, I encourage you to research your rights. Reach out for help. Network with other parents. Know you’re not alone. Don’t assume negative intent from strangers, truth is a lot of them just really don’t understand. If you’re a stranger and you’re witnessing a situation with a child you don’t understand, don’t assume negative intent. Educate yourself. Encourage that parent. I recommend doing this at a distance, as for some Autistic children, a stranger who tries to approach them during a meltdown can be even scarier than whatever set off the tantrum. Remember, that sometimes Autism Speaks… other times, it screams.

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