Last month I posted a blog entitled Designing the Best Vehicle for Autism, that touched briefly on what I would include in my own DIY owner’s manual parenting autism. Given that my experiences range over 25 years, by volume alone it would require multiple blogs, so my readers wouldn’t fall asleep at the wheel. Everything I know and have learned for the most part has come from my son. Every path parenting autism starts with your child. So as I look at my own manual, all roads lead to my son― past to present. This journey from the start has been all about Jonathan. And that beginning was over 20 years ago.
Looking back, some parts feel like it was just yesterday, others a blur of the past, and some have faded from my memory. One that time will never erase is the day Jonathan was diagnosed. I think it’s safe to say that hearing the words, “Your child is autistic” is like being broadsided. You are sent spinning in many different directions. Anger, fear, shock, grief and yes denial are all a part of the process― for you. The diagnosis does not change who your child is and has been since the first day you met. They know who they are and we need to remember they haven’t changed. While it may feel as though everything is about autism, in truth it’s more about the individual.
My autism operating guide is all about Jonathan and yours will be all about your child. It is where you will find answers and yes, questions. I think it’s safe to say we go into hyperdrive researching autism and given the enormous amount of information from countless sources become overwhelmed. Been there, done that. Pump the brakes, start slow and remember your child. Watch them, learn from them, delve into the world as they see it, feel it and perceive it. Honestly, I wish I had spent more time learning about autism through Jonathan than from professionals and so-called experts. And while I did acquire knowledge from some and my own research, my best resource guide has been my son. Learn and lead with your child for together you become the vehicle you seek in each other.
Initially I felt it was my role to determine everything for Jonathan. I was the parent, he was the child. He was autistic and couldn’t understand the world around him― or so I thought. I think a large part was my concern that Jonathan fit in and be accepted. What I failed to recognize at that time was Jonathan had every right to be his own unique self, no apologies necessary. As his mother I felt the need to protect him. The world can be a very cold, uncaring place. Add a diagnosis like autism to the mix and it becomes even more so. Until one day it dawned on me that while my intentions were good, they also sent the message that he needed to change. But he didn’t. We are who we are― the word autism just tells others we need support, acceptance and understanding. The world needs to catch up and it is my hope that someday it will. That’s where the real change needs to begin.
I think my first lesson in parenting and understanding through Jonathan came from an occurrence one day at preschool. It was snack time and he was using a PEC (Picture Exchange Communication) board. No doubt they are called something else now! Anyway, he handed the juice PEC to his paraprofessional. She poured his juice and put the PEC back on his communication board. He promptly removed it and handed it back to her. Puzzled, she looked at the teacher who laughed and replied that she had only filled his cup halfway. When she topped it off, he placed it back on the board. It reminded me that communication occurs in a variety of ways. Verbal, non-verbal― it doesn’t matter. What matters is being understood. Jonathan communicates his own way. This also led to a better understanding of his stims― where, when and why. His strong rote style of learning, sensory processing, sensitivity to certain sounds or textures or lights. Adapting to his world and supporting his needs, just as I have done for all 3 of my children-each their own unique individual.
Parenting a child with autism shifted my approach at times but not the foundation. The manual can get rather thick here as you build it. Age, autism, puberty etc. all play into each chapter. Children learn important lessons throughout their life― children with autism do as well. Life skills, independence, integrity, kindness and compassion to name a few. Learning from Jonathan as much as I did then and do now has proved an invaluable tool. Expectations taught us all that he was more than capable when given the opportunity and direction to be accountable for himself, his actions and outcomes. Remembering and respecting his individuality yet tempering it with the same love and guidance I gave his sisters opened more roads. Autism shouldn’t stop you from being who you are as a parent and it doesn’t define your child’s progress or possibilities. It is simply a part of the process. But the process is always unique to your child.
From day one, even before his diagnosis, Jonathan was always showing us who he was, what he wanted, liked, disliked etc. Observing has led to more and better understanding. That’s not to say it has been easy, in fact, often the opposite at times. But letting your child be their authentic self― autistic or not, is an invaluable tool. The more you know about your child and the more you share that with others, barriers and bias start to erode. Don’t let anyone ever make you or your child feel less than because of their disability. Channel your love and advocacy by showing others autistic is a word that means love and accept me for who I am. Autism is all about the individual so start and stay there as you write each chapter of your manual.
Any vehicle to success is all about embracing your child while living, learning and loving a life with autism.
(Next blog: The Early Years or If I knew then what I know now)