Sometimes when you edit a project like the Autism Awareness Month guest blogs, something unexpectedly amazing happens. I received a submission from Susan Sullivan on the first day. I received a submission from Andy Sullivan last night. I went to High School with Andy. I have never met Susan. Their son, Brian, is on the spectrum. I would tell you a little more about them, but their writing tells me everything I need to know. They are both important, strong voices in our community.
This guest blog is exactly what this project is all about. I have two different perspectives on raising the same child. You'll love them.
Ladies and Gentlemen, I present Ms. Susan Sullivan...
Upon seeing the challenge of explaining what Autism means to me, so many thoughts, feelings, and experiences collided inside my head that I decided to just make a list. Some parts are from my head, some from my heart, and some straight from my soul. Maybe you can identify. I hope you can enjoy.
Autism is learning. About myself, about my son, about my friends and family, about learning itself.
Autism is taking and finding wonder in the world as seen by my son. A butterfly flying by, a bike lane sign on a street corner, the moon in the sky, a copy machine spitting copies out into the finish tray...
Autism is grief. My son will never be and do many of the things I dreamed for him.
Autism is joy. Each and every tiny step he makes forward gives me the greatest joy I have ever known.
Autism is memorization of "Goodnight Moon" and "The Very Hungry Caterpillar".
Autism is frustration. Will he ever master poop?
Autism is hard work. It's hard work to be the best friend of a 7 year old boy!
Autism is a puzzle. What in the world is the "white peanut butter" he suddenly wants on his pasta? (turns out it's just butter) and Why on earth is he counting loudly while climbing up a ladder at the park and shouting "Oh, no!" as he goes down a slide? (Ah-ha! He's playing Chutes and Ladders!)
Autism is belly-laughing and giggles on the 4th of July when colors explode in the sky.
Autism is discovering that another name for a library could be a "book hotel".
Autism is riding in each and every elevator in town.
Autism is uplifting. My son cheerfully says hello and goodbye to the person in each and every drive-through window we visit.
Autism is sadness that I missed being in the family photo at my brother's wedding because my son was heading toward sensory overload and needed to leave.
Autism is sweetness in the form of genuine concern for his grandmother's sadness after the death of a beloved dog. He made a card for her with valentine heart stickers that said "hugs" and "kisses", then delivered it in person with lots of said hugs and kisses.
Autism is heartache when we have a hard day and father and son or mother and son are butting heads and there is a communication barrier between.
Autism is learning all of the episodes of Little Einsteins and Mickey Mouse Clubhouse.
Autism is an adventure. What interesting viewpoint will he show me today? Will he like this new experience?
Autism is tears. Tears can and do accompany all of the above from time to time.
Autism is learning. How each person deals with autism is a choice. I can choose to focus on what I'll call the dark side of autism with meltdowns and medical problems and learning disabilities. Or, I can choose to focus on the positive, amusing, and flat-out joy of having a child who views life from a different angle. I learned to put aside the grief, sadness, and frustration and embrace my child as he is and for what he can be. I choose to focus on the joy and deal with the dark as needed.
Ladies and Gentleman, I present Mr. Andy Sullivan...
What autism means to me?
I am truly grateful for leadership of people like Jordan and the other bloggers and advocates taking the lead in spreading information and hope among those of us that are rowing the same boat. When I read about this guest blogging opportunity, I told my wife that she HAD to write to this prompt. My reasons are these: A] She is smarter than I am, B] She is more insightful than I am, C] She is a better writer than I am, and D] She is far better looking than I am. However, after looking at a blank page in much the same way a drummer looks at sheet music, an idea came to mind that can offer a different way of looking at our collective predicaments.
Let me first preface this by saying if what I am about to say offends you, well tough because the prompt is what it means to me. Let me also say if you are offended, you are probably correct in your assessment and I am tool. My purpose with this response piece is not to convince you of my brilliance nor tell you how to deal with your child. I would never be so presumptuous as to tell you how to deal with your child. It is to answer the question, what autism means to me?
What autism means to me is……..
NOT A DAMN THING!!
Wow, that is harsh, but it is the way I look at it. We are raising our child, Brian. We are raising our child Brian, who has autism. We are NOT raising our autistic child, Brian. Our boy is 7 and a half and we are dealing with HIS issues, some of those are created by his condition, while some are just the growing pains of a 7 year old. The goal is to move him from one second to the next, hour by hour, day by day and hopefully done in a manner that is not really different normal parents. Whether I am teaching my boy how to throw a baseball or to use the toilet effectively, the life skill being taught is one that still needs to be taught. When I look at my son from this perspective, it helps me see my son in a way that most parents see their kids. I could try to explain this further, but this says it in a way that I can’t match [http://phatjaye.blogspot.com/2013/03/feels-like-first-time.html].
There is a reason that I look at our family’s situation through this lens. The short answer is that it is the way I was trained to handle it. I was born a healthy baby until around a year to 18 months old. Basically I would get sick and never get better. It had doctors stumped for the longest time. During this time I kept getting worse and worse. I was eventually diagnosed as missing roughly one third of my immune system (there is a technical name, but the name is not important and contains more characters than a month of twitter posts.) The best way to encapsulate my situation is to tell you that I did get the polio vaccine. The heat weakened live vaccine is designed to be so weak that the body fights it off so if you are exposed to the real thing you already have the antibodies ready to go. Well the vaccine was stronger than I was and I ended up with polio at the injection site.
I don’t go through the last paragraph to gather pity, but to explain that as I was growing up, the life lesson was, yes, I am/was more likely to get sick and feel physically awful. I had to learn to suck up what I was physically feeling in order to accomplish what needed to get done or what I wanted to do. If I did not learn that lesson, I was going to spend a hell of a lot of time kept in a physical prison of illness. If I wanted to play baseball, I had to put my head down and learn how to run without a limp. Putting my head down and dealing with each problem in an incremental manner was the only way to move past my physical problems and lead a normal life.
I can drop in all of the clichés about life being a journey and that journeys are taken one step at a time. Well, they are clichés because there is some kernel of truth to them. We are all walking our own journey alongside our kids. The best way to deal with some of our son’s problems is to break them down into the bite size chunks he needs to learn, just like how our parent’s taught us. Every child has some sort of problem or challenge or issue that needs to be dealt with in some way. Autism is a name for a grouping of problems that are often more severe than those of “NT” children, but as for what it means to me, it’s nothing. We still approach our son as we would any child with love and an attempt to teach and lead him in the best possible way for him. It just happens that he needs to learn in different chunks. Sometimes the best way to handle our “life with autism” is to do what our children have already done that started each of us down this road and follow the guidelines of Mythbuster, Adam Savage: “I reject your reality and substitute my own.”