Right now, on Autism Awareness Day 2014, I’m sitting next to my son while he chews on and sniffs his blanket. He’s six and excited about his 7th birthday in a couple weeks. He loves Minecraft, Legos, and- like most kids- tells jokes that make no sense (which he forcefully fake-laughs at because he’s learning people laugh when jokes are told).
I sat with him today in Panera eating our Blue Puzzle Piece cookies to benefit the Cleveland Clinic Children’s Center for Autism. I was beaming with pride as he happily soaked up stories of his first word (car) at age 3 and his first year of speaking (which consisted of parroting commercials, cartoons, and the phrase “copyright 1995”).
I decided that our homeschooling today would consist of learning about Autism. He’s displayed Autism characteristics since I can remember, even in infancy. We have very few pictures of him smiling, looking at the camera, etc. Most are of him crying or lining up any object he could find all across the floor. It was concerning to have a baby who cried nearly 24/7 and didn’t sleep for days. I thought he may have had issues with milk allergies or something painful that was causing such upset. At around 14 months, any communication turned to just screaming. That’s when I began to learn his language. That may sound like a strange concept but, for an Autism parent, it’s completely understandable. I can now take a scream and decipher what it means, what he needs, or what’s wrong. That has come from nearly 7 years of guessing until I could figure it out. He speaks now, eloquently, I might add. It’s nearly always centered around his interest at the moment and he interrupts constantly because he kind of forgets others are there unless they make their presence known to him by touching him. (Not for too long or too softly. He hates that) He sees none of this or most of his other characteristics. So, I set out to teach him today about Autism and what it means.
He knows he has Autism. He knew that, last year, he was moved in his first couple weeks of school from a typical classroom to a combo/transitional room of special needs and “typical” children with a teacher and an aide. He hid under the table, was spinning during storytime, screaming, crying because they had no seatbelts on the bus (the rule is to always wear a seatbelt when we drive, so he would panic without seatbelts and lie on the floor of the bus to feel safe), trying to leave school or scale the walls of the playground. He was moved to a special needs 1:1 student-teacher ratio room and a special needs bus with an aide. They also were having such a hard time seeing that the things they were punishing him for and reporting home as “problem behavior” were actually characteristics of Autism and ADHD (which he also has). These were teachers specifically trained in caring for kids with special needs including Autism. They actually would have him stay at school during special ed field trips and do physical labor instead.
Even his own (ex-) Autism Specialist declared him as “cured” simply because he began talking.
I remember his first kindergarten teacher (an incredible man who cared very much) calling at lunch and crying because he’d never seen anything like this. See, my boy was diagnosed at 14 months. At a year old, he was banging his head on everything around him so much that he was splitting his forehead open and we were having to go to the ER to get it glued shut. He’d bang his face on the coffee table until blood was running down his face and laugh the entire time while I frantically tried to figure out how to hold his head to stop this for hours at a time. His doctor actually had me give him Benedryl on a few occasions because it was safer than the concussion he would have given himself. My little man wore a helmet for nearly two years. He screamed and had meltdowns at every public place we went. It got to the point that we couldn’t leave home.
I brought this up at his checkup appointment, filled out their questionnaire, and brought it back. They said he was off the charts in his social impairment and rating for concerns of Autism. We were referred to a Neurodevelopmental Pediatrics office in the local Children’s Hospital. After consults and evaluations, he was officially diagnosed with Autism and I was given a “grim outlook” because of the severity. He’d never talk, never say “Mom”, never function in society. We started therapy, but it felt like we were simply trying to change him into someone else and not learn how to best support and care for him.
Around that time, I heard about Temple Grandin. She was in the same situation (only older) when diagnosed and her mom was told back then that they put children with Autism in living centers. Her mother refused and began to work with her Autism, not against it. Over the years, Temple Grandin went on to college and used her unique characteristics to her advantage. She developed better systems for farming and slaughterhouses. She was quoted as saying that people with Autism are “different, not less”.
It was an awakening. My son was not diseased, sick, or broken. He was amazingly different. He was unique and needed a unique approach. I started to make myself aware of Autism, but Awareness is a beginning, not an end. Awareness needs more to make a difference. Awareness needs education, caring, concern, empathy, and understanding. Awareness needs to become acceptance and inclusion.
Just last week, I took my son for ice cream and playtime at McDonald’s. He only eats vanilla and had a meltdown because they forgot the cherry on top. He was on the floor, sobbing and punching himself in the face, then ran and hid behind a display. He’s 70 pounds and there was no way I could carry him out to calm down outside, so my only option was to work it out right there. It may sound minuscule to most, but to a child with Autism- to my son- routines and knowing what to expect can mean the difference between a good day and the world falling apart. You may be thinking that he needs to “learn” to cope. And we talk about preparing for situations and try to plan out everything. But, at that moment, learning to cope was no more easily done than for me to learn to not have trouble breathing during an asthma attack. When those things happen, it’s about helping the situation and returning to his normalcy. As a crowd formed around us, staring at him and pointing, whispering and rolling their eyes, saying “if a parent lets their kid act like that, they should have their kid taken away” in a volume to be sure I’d hear, trying to grab him or tell me he “needs a good spanking” and what their mom did for behavior like that…I realized the need for more than Awareness. Probably 90% of those people had heard of Autism. Probably 90% of them envisioned Rain Man. Obviously, none had envisioned my son- a boy who physically looks like any other child.
In honor of my sweet, loving, misunderstood son and the millions out there like him (and not-so-like him!) with Autism, please take time to familiarize yourself with Autism and the Spectrum. You may not recognize them at first glance in a child you see at the grocery store or restaurant but the knowledge will enable you to understand. Remember to offer help, not advice. Remember to care, not to judge. Remember that, while cookies and wearing blue on a certain day or month is a nice gesture, it’s just the beginning to a world that includes my son in it and that rejoices in the things he does in place of punishing him for the things he doesn’t.
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