The hard times. They impact our lives so greatly yet are the least talked about out loud.
Why is this? Why do we hold back? Are we afraid of judgment? Are we afraid people will not believe us? Do we not want to relive the moments? Are we sugar-coating our experience?
I don’t know. It’s probably a little of all of that.
We, as families, just move with these times. Grow with them. They are our burden to bear and simply a “part of Autism”.
But in not speaking about the hard times, we are doing a disservice to our emotional well-being. We are not helping those newer on the journey, not shedding light on the path ahead for them.
Our journey with behaviors started small. Little moments here and there when he was upset. More like tantrums than full blown meltdowns. When they are small and have meltdowns, you can pick them up and move them to a safe place. You can hug them and they can’t get away. They do not have the motor skills to do much damage.
Flash forward several years and Z had just about reached my height. He had become stronger, had gained motor skills that I would normally be proud of. At this point, moving him to a safe place became harder. I could not just pick him up and put him down where I wanted him to be. He could throw items across the room with enough force to break them or whatever they came into contact with. Suddenly, we found ourselves working through his behaviors while also surveying the room for potential objects to throw or break.
Then he hit puberty. Puberty is hard enough for any typical kid. Add the complexities, challenges, emotions of Autism to this and it is a perfect storm. In my case, my child grew and grew. He became the tallest in our family. He has super strength during a meltdown. I don’t think he even knows his strength during these times.
But instead of focusing on what the behaviors are, I want to share my side of the story. As strong as you appear, the warrior mama you are, you get your feelings hurt. You grew this human being, you developed a connection with them before they even existed physically in the world. You are most likely the parent carrying the heavier load of caring for this child. You give your all to them and sacrifice a lot. You deserve to be placed on a pedestal by all of your children.
And then the meltdown occurs. You realize it is not just about simply “getting in the way” when you take a hit but that your child is coming for you. And the thought is inconceivable. Even writing it here is hard. When it first starts to happen you are confused. Wait, is that what happened or am I just being overly sensitive? Where was I standing? Close enough to get hit or did he really cross the room to hit me? And you realize exactly what is happening. And it hurts to the core of your motherly heart. You would give everything and more to your child to ensure their happiness and in less than an hour they can break your heart.
It is a difficult concept that just isn’t spoken about in our society. This scary part of Autism is whispered among parents and specialists. Parents often experience this and then head into work or a social function and you would never know. We disguise our hurt so as not to burden others. How many times has this happened to me and I have cried an entire night and never written about it, never told my closest confidants?
But here’s the thing that keeps us going. That allows us to immediately function in society as if nothing happened. I know it is not personal. Read that again… It is not personal.
This took me a long time to learn. A meltdown could go on for 30 minutes where you experience the full gamut of emotions. You are bruised both physically and emotionally. It is an out of body experience for Z. I know it is not him, the eyes are not his. His emotions and body simply take over. It is not rational, not pre-planned, not voluntary.
I vividly remember a time when Z was smaller and during a meltdown I was simply hugging him, waiting for it to pass, keeping him safe. I physically felt his body change, relax. And he was back. He was laughing and smiling. And in those days I didn’t know how to bring myself back as quick as him. My feelings were hurt for days. What did I do wrong? Why does he hate me? I am the worst mom! All these thoughts would swirl for days upon days, quietly.
Quietly….
I rarely voiced them. No one knew. Z looked happy, the rest of the family looked happy and I was silently struggling. I felt it was a burden to always talk about his meltdowns. Like always being the stormy cloud in someone’s bright sunshine.
I am still working on being open about these feelings. But what I have learned is how to bounce back. Trust me, it is not easy. And for new parents of Autism, I know you are not here yet. But you will be. After time, after enough experiences. You will understand that none of this has to do with you.
My child is suffering, it is out of their control. I am here to support. That is all. Sure, there will be teaching moments and parenting moments once the dust has settled. But during the meltdown, you are support. You are there, as you are, as the Mom or Dad that loves them and would do anything for them.
Your feelings will get hurt (sorry, that part doesn’t go away). You may steal some moments to yourself afterwards and have a good cry. You may have some “woe is me” thoughts. And that’s okay. That is healthy.
But when they come back, come back. Show up. Continue to support and pour on the love.
And when things are good, enjoy the good. Relish the good instead of living in the past. This is when you recharge your emotional battery and get it ready for whatever is to come.
And always remember. They love you, they look up to you, they NEED you.
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Tilted Axis 