The Storm

This is not what I had pictured my first autism blog entry to be. It was going to be uplifting, or funny, or factual. I was going to show you all of the amazing things autism has taught me, or maybe some of the quirks and beautiful experiences, or how we have grown stronger as a family because of it.

You may want to come back at a later date if that is what you would prefer reading, because I am going to get super raw today. Like, catch a fish, slap it on some rice and eat it right in the boat kind of raw.

Today has not been a good day. We get those sometimes (…often…), but today was a really, REALLY not good day. Do you ever get so emotionally confused between being angry enough to explode and sad enough to cry for a week, so you end up just being numb and vacant? It has been one of those days.

We are in the process of adjusting Jason’s medications right now. We are trying to find that sweet spot with the perfect combination and dosage strengths to take the edge off his hyperactivity and rage. I like this new med. Except it doesn’t last long enough. Evenings (when the medication has worn off), night time, and mornings are absolute hell. Jason’s stims (this is an action that he has to do repeatedly…right now it is dangling objects in front of his eyes and bouncing them in a bungie motion) are so intense that if his toy doesn’t bounce in a specific way, he melts down. Today, Jason screamed and hit and kicked from the time he woke up until his medication kicked in. Even after the med kicks in, he is so raw from before that he cannot fully settle himself.

How can I explain Jason’s screams? I feel like they are something you have to experience to truly understand. They come from the depth of his soul, with the ferocity of his emotion hitting us like a Mack Truck. If the purest form of anger had a sound, this would be it. It is not him throwing a tantrum because he didn’t get his way. This is his autism taking over his body and revolting at the imperfect bounce of the elastic on his toy. You cannot reason with him. You cannot distract him. All you can do is ride out the tsunami and make sure he can’t hurt himself or any of us.

Each scream and hit and kick destroys his father and me, little by little, piece by piece. On days like today, we will be empty husks by bedtime. Then my husband, like the saint he is, will be up every hour with Jason during the night. We get up in the morning and brace ourselves, wondering if today is going to be like yesterday.

I don’t like to dwell on the negative. I want to be able to show you our happy moments, and how my love for my son is unwavering and fierce. But today I need to be real and honest, and tell you that it ISN’T always sunshine and rainbows, and there are days that I hate autism with such intensity that I am ashamed of myself. I struggle with wanting to love EVERY. SINGLE. PIECE. of my son, including his neurodiversity, and then feeling like a horrible parent when I just want the screaming to stop.

I chose to share this side of our life for two reasons. First, I’m selfish. I need someone to hear me, to read my thoughts and maybe understand a little bit of what happens in my mind. It is cathartic to write this down, opening my soul up to you and perhaps finding a little bit of myself in return. Second, I want other autism parents to know that you are not alone. There are others out there that feel the same way you do: angry, sad, ashamed, empty. I have found that no matter if you are new to this game or a seasoned veteran, it helps to know others are fighting the same battle between loving their child hating specific moments in time.

So, here we are. Jason is having a nap, finding his calm after the storm. My husband and I are finding our centers with hugs and positive words and love.

Forward we move…