I remember the articles I started reading about autism after my son was diagnosed. Like many mothers, I needed a reason for the autism so I tried to find out how and why this happened to me and my son.
I read so many articles that theorized all sorts of possibilities for why autism might show up in a child. I read about genetic reasons that could contribute. Family history. Genetic disorders. Low oxygen during birth. Age of parents...and on and on the list grew.
Despite being a biology major in college, being able to read the actual research papers and understanding the statistics and methods of the study everything I read increased my level of guilt with my son’s disorder. No matter what I read everything made me feel as if I could have controlled this. I could have either stopped it or I was the direct cause of it. Within a year of my son’s diagnosis, I was certain that his autism was my fault.
Certainly not at a logical level. If you had asked me, “did you cause your son’s autism?” I would totally have said, “no, of course not! That’s just ridiculous”. And it is ridiculous. But my heart didn’t believe it, just my brain. In my heart, I felt for sure that I had done something wrong. This belief became one of 6 completely unhelpful mindsets in growing through this experience. These mindsets created a path for me that led me in the opposite direction of where I wanted to go.
When I was thinking about the birth of my son I was planning proms, sports, and dates with girls. I was thinking of his first car, his first bike ride, hanging out with friends. When we were told he had autism all of those things seemed to disappear instantly. It was like a puff of wind came and just blew them right out of the sky. The feelings that came with that were fear, sadness, anger, and guilt. So, so much guilt.
The promise I had in my head of how my life was going to go didn’t include autism. It didn’t include a non-verbal child. It didn’t include OT and speech and ABA therapies. So when the label was put on my son I fought it with everything I had. Not only was it not on the plan, but in my heart, I was the cause. I had created it. At best, I hadn’t stopped it. And by God, I was going to fix this thing so my son would have the life he was supposed to have damn it.
The guilt for feeling in some way responsible for this pushed me to almost obsessive behavior in understanding autism. After several months of denial and not even being able to hear the word autism I started consuming every single thing I could find on it. Every. Single. Thing.
I read books, blogs, and articles. I listened to audio stories, podcasts, and news reports. I bought reference manuals, software, and audiobooks. Anything I could get my hands on to understand and GET RID of this affliction was my top priority. And everywhere, this guilt persisted. The responsibility that I had taken on created so much stress for me that it leaked into other areas of my life. I wasn’t able to spend the kind of time my daughter needed me to with her. I wasn’t able to be happy at home, at work, with friends. I felt paranoid that others could see that I was the reason for this. That they pitied me and my family.
Slowly things began to pile up. All my life I have been able to handle problems, find solutions, make things work but in this I was losing. My marriage was in a bad place before the diagnosis, within a few years it was ending. It was then that I had my moment of clarity. In this very dark place in my mind I was completely done. I had nothing left to do, to give, to anything. I just laid on the floor in the bathroom and cried. Ugly cry.
I remember so clearly when the thought came to me that I wasn’t making it better and my tears slowed. It was literally like I took a breath and suddenly there was this tiny bit of piece. And I hear my voice in my head say to me are you going to make this better? I realized that I had been spending to years creating resentment and anger instead of actually working the problem.
And what was the problem? The real problem was what I felt about my son’s autism. It wasn't autism itself. It was the meaning I had given it. It was the importance, the power, in addition to everything I thought about it. I thought autism was my enemy...so I was at war. But you can only fight if you have an opponent, otherwise there is nothing to fight with. I started to slowly piece together the idea that maybe autism wasn’t my enemy. Was it possible that I didn’t need to be at war? And if I wasn’t at war, and if there was no enemy, was it possible that I wasn’t responsible?
These first few moments of curiosity were brief. Very brief. But I came away with the knowledge that I needed to radically shift how I was thinking about autism and the impact it was having in my life. I recognized that my strategy to that point had not been helpful and that if I continued in that direction more of my life was going to start to hurt. Including more pain on my two children. This willingness to be wrong was critical to my ability to shift my mindset on how I was thinking. It took courage because I had to be vulnerable. I needed to stand in my fears and decide they weren’t real. That I had created a monster out of that fear.
The first fear I needed to face was that I caused Jack’s autism. This was a lie I had been telling myself in subtle ways for two years and there was no reason to continue. The guilt that this put on me pushed me to act in ways that were angry and fearful and then I wouldn’t get the outcome I was looking for. I had to shift that belief. Essentially I had to believe something different. Something not only more factual but also more helpful and healthy.
This was not my fault.
It really really wasn’t.
When you begin to shift a belief and mindset you need to start with some really simple plain logic. There is not one “thing” that “causes” autism. Or most anything really. Autism is a hugely complicated dynamic disorder and we don’t know anything that “causes” it. We have an idea about some things that might make it more probable, but not cause it. Cause is a singular exchange. X = Y. You don’t do one thing and cause autism. It just doesn’t happen. PERIOD.
I knew this was true but I needed to believe if from the head down. So I started the process of “convincing” that I wasn’t responsible for Jack’s autism. Because I wasn’t and continuing to act like it was, even when I knew it wasn’t, was making things worse, not better.
I say convincing because that is what it feels like to make a change like this. It feels like you are lying to yourself. It didn’t feel like I wasn’t responsible. But I knew I wasn’t so I needed to do the work to make that shift.
I’m not going to lie to you guys. This shit is hard to do. It takes time. It takes commitment. It takes courage.
But you can do it. Yes by God you can do it.
Progress is slow at first. It’s awkward. But a little at a time you begin to make this shift. And when you do the payout is so worth the time. One day you wake up and you don’t feel hopeless.
One day you go to bed and you don’t feel empty.
One day you really know that this isn’t your fault and you can even give people reasons for why it isn’t.
Because it’s the TRUTH.
And it is just as true for you, I promise.
If you are struggling with a new diagnosis for your child, parent, spouse...whomever. Don’t sit in the pain a second longer than you already have. You can do something to make it better, don’t make it worse.
You can start asking yourself the questions to see how to shift both what you believe and your mindset about what you were handed. You can make the decision to do the work. That decision comes when you will no longer allow for anything else to happen. You simply just don’t have the capacity to do anything else but change.
Making your life worth it is about deliberate decisions on how to think, act and believe. It’s about taking time to consider your life and then being on purpose with living it. Not dreaming it. Not wishing for it. Not even creating it...but living it. And if you need help, reach out. Schedule a free session with me so we can talk about what you need to shift and how to do it https://calendly.com/consider-jennifer/coaching-session
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