“Cody was born perfectly healthy and oh so beautiful. He met all his milestones. Really, everything was unremarkable and just so very perfect.
Then when he was 17 months old, everything changed. He was different. He lacked eye contact. He was spinning and flapping constantly. If anyone walked into the room, he never even turned to notice. It was as if he was existing within our world but wasn’t a part of it.
We noticed he had difficulty sleeping. It was difficult to even put him to sleep at night. I remember holding his hand and standing at the crib or rocking him for hours. Oftentimes, I would fall asleep while standing and end up slamming my head into a nearby wall. It always seemed like he needed my comfort in order to fall asleep.
This went on for so many years.
I remember standing behind him and yelling to my husband to watch as I stood behind Cody and clapped repeatedly behind his head loudly. He didn’t even flinch. I said, ‘He’s deaf, right?’
That started the countless doctor appointments to see what was happening.
In the end, the diagnosis — autism. Years later, as he didn’t progress rapidly enough, his diagnosis was then replaced with severe nonverbal autism, then years later, severe non-verbal aggressive autism with I.D. (intellectual disability).
Every diagnosis was so heartbreaking. It seemed no matter how hard we tried, he just wasn’t progressing and instead, he was slipping away.
I spent my days with a highly agitated little boy who lashed out repeatedly, all day long. I spent my entire day just keeping him safe and my nights researching the internet for hours night after night trying to find help or understanding or maybe why this happened to my baby.
I decided long ago, whatever happened has happened. Instead of blaming or spending my time and energy trying to find out the answer to that question, finding out why or how wouldn’t change a thing.
My son has this debilitating condition that will ultimately decide how his future plays out. My son needed me to help him learn how to deal with the anxiety, which pushes him to the edge and causes his severe meltdowns.
He needs tools. My only job to help him cope so he can have a happy full life and that is the path I have chosen. After we got the diagnosis, I worked hard to get all of his services in place. We first started with early intervention. Then later, he started school, which were very hard years.
He never did well in school, especially in the early years. The teachers didn’t know how to cope, and I would get so many calls asking us to pick him up due to meltdowns. He was always isolated from the others, which I hated.
When he was in elementary school, he was physically abused by a speech pathologist. That is another story I may tell one day.
I spent so many years trying to get the right program for him. In the end, we really never found the right fit. He struggled many years with being misunderstood and I truly think they didn’t know enough about autism then. Now there is so much more known and there are more services available.
He was a very unhappy, explosive little boy in the early years. Looking back, I now know it’s because he was unable to communicate but it didn’t make it any easier at that moment. The meltdowns would happen for hours at a time. For so many years, I felt as though I was losing the battle. He was slipping away, and I didn’t know how much longer I could hold on.
He was getting bigger and stronger and more explosive every day. I became afraid of him and he knew it. I watched him run through the house, screaming and kicking walls and breaking windows. He ripped every screen from every window of our home at one point. I watched him throw an entire barbeque over to the ground with ease. I remember him doing these things like it was yesterday. They are forever engrained in my memory and this is where I flashback to whenever he has a bad day.
I fear these behaviors will return. No matter how hard you work on being positive and looking toward the future, these memories are hard to forget.
I remember calling the police at one point because I just needed a witness. I needed a witness when my son hurt himself so when I brought him to the emergency room, they wouldn’t blame me for abuse. I knew he was going to harm himself. I could no longer keep him safe.
I reached out — oh, believe me — I reached out to anyone and everyone for help, but I was left empty-handed for a very long time. I was primarily alone during these times. My husband worked very long hours and I rarely spoke of what was happening.
I didn’t know anyone with a child like mine. I felt like no one could even relate. It was isolating and it felt as though I was the only one living this life.
To be perfectly honest, while writing this and reflecting, I don’t know how I made it through. It seems as though I’m writing about someone else’s life. It seems like a horrible nightmare, to be honest. I couldn’t believe this was my life. I couldn’t believe I did everything right and still, my child suffers. I couldn’t believe I could be strong enough.
Sometimes I’m still not.
I cry uncontrollably when watching a movie with a perfectly painted picture of a family not riddled with such struggles or when I think about the future and what it will look like for my son when I’m gone. It terrifies me.
My son deserves so much. He’s perfect to me but riddled with so much and it’s just not fair.
Why do I share this with you? Simply because when I share videos of Cody, he is so happy. It is true that he is primarily happy, but it has taken a very long time to get here.
Maybe it’s not that different from your side of autism. Please know you are not alone, my friend. You are never alone.”
This story was submitted to Love What Matters by Leasa Hoogerwerf. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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