Wednesday, November 20, 2013

"Maybe Ifs" on Diagnosis Day


Angry. This morning I woke up and I was so angry. No, not angry… Furious, hateful, irate... 
My alarm went off, I kept my eyes shut. I wasn’t going to open them. Kelson wasn’t awake yet. He didn’t need to go to school. We’d just sleep in. We’d just hide from the world today. We’d just pretend nothing was wrong with anyone. We’d just pretend that everything was just fine. You see, I got a phone call last night informing me that all of Kelson’s testing had been “scored” and the school psychologist is now ready to “go over it” with me. This morning I was weak. I didn’t care. I turned off my alarm, covered my face with my blankets, I rocked myself back and forth, I cried and cried and cried. I tried my hardest to fall back asleep but I couldn’t escape the ugliness in my head. I thought;
Maybe if I hadn’t been so young… Kelson wouldn’t have autism. 
Maybe if I had focused more on Kelson and less on my own education, Kelson wouldn’t have autism.
Maybe if I hadn’t worked so hard… Maybe if I had worked harder… Kelson wouldn’t have autism.
Maybe if I had more money or more time… Kelson wouldn’t have autism. 
Maybe if I hadn’t been “too tired,” “too stressed,” “too busy”…. Kelson wouldn’t have autism. 
Maybe if I didn’t have 2 more kids… Kelson wouldn’t have autism.
Maybe if I had been more stable and moved less… Kelson wouldn’t have autism. 
Maybe if I had breastfed him.. Or maybe if I hadn’t vaccinated him… Kelson wouldn’t have autism. 
Maybe if I hadn’t spent so many years hating God… Kelson wouldn’t have autism. 
Maybe if I hadn’t been so weak… Kelson wouldn’t have autism. 
Maybe if I had been a better mother… Kelson wouldn’t have autism. 
Maybe if I hadn’t been so selfish… Maybe if I’d given him up for adoption (like so many suggested I do) to a more deserving, loving, and prepared mother… Kelson wouldn’t have autism. 
Maybe Kelson doesn’t have autism… No, maybe if I hadn’t been in denial for so long… Kelson wouldn’t have autism.

All emotional irrationality aside, it didn’t much matter this morning. What was done was done and here we were, finally being forced to face this long awaited “judgment day.” I had envisioned the day that an actual diagnosis was made being a day that we sat down and outlined all the mistakes I have made as a mother, a day where I promised that I had matured and that I am a much better mother than I used to be, and a day that would negatively define my innocent child for the rest of his life. A part of me hoped that I was making it all up, that I would walk in there and the psychologist would roll his eyes and tell me that I am being overdramatic; my child is absolutely fine… I guess I knew that wasn’t going to happen though.
Moving along. Kelson got up at about 9 and came into my bedroom dressed and ready to go to school. I drug myself out of bed, got the little kids dressed, and strapped them all into the car. I drove slower than usual. I wasn’t ready. I tapped the breaks a few times as we passed several little dirt roads that I seriously considered turning down, just to avoid going to the school. I have driven this road a thousand times but today, it seemed so short. In no time, we were there. Kelson hopped out of the car and walked into the school. I had to take Kaylee and Grant to my mom’s house. I wanted so badly to reach out and grab onto him. I wanted to beg him to stay with me! I didn’t want him going in there. I was angry. I hated school. I hated psychology. I hated myself. Mostly, I HATED AUTISM! I couldn’t see how any of this was fair. I couldn’t understand who the hell anyone in that building thought they were or why they thought they had the right to decide who is sick or not sick, who is crazy or not crazy! How dare they “score” my child. How dare they judge him, me, US!
Once I finally returned to the school for my meeting, my eyes poured tears at the site of the playground. I just wanted him to be normal. I just wanted him to play and bask in the sweet innocence of childhood like I did on that very playground. It wasn’t fair. It isn’t fair. I nodded my head and quietly whispered the occasional, “Okay… Yeah” as the psychologist went over the test results. It took everything I had to hold in my anger, my hatred for the disorder. Once the word “autism” was finally said out loud, the psychologist gave me a strange look and said, 
“You didn’t have much of a response to the word, you must have already suspected autism.”
I wanted to yell, stomp, and cry… Yes. I had “suspected” it. Yes. I have known for some time that my son was struggling. I tried. I begged. I pleaded. I asked over and over again for help and was repeatedly told, “Wait for kindergarten.” I spent an entire summer anxiously awaiting and dreading this very moment. YES! I KNOW MY SON HAS AUTISM BUT FOR SOME ABSURD REASON, SOMEONE HAS TO HEAR IT FROM YOU BEFORE THEY WILL DO A DAMN THING ABOUT IT!

As he went on about the test results, my mind wondered back to a time, 3 or so years ago, that I took my sweet little Kelson to a counselor. I was in the middle of a divorce and Kelson’s behavioral problems escalated to an all time high. He was out of control. Worse though, was that I was out of control. Neither of us could control our emotions or our anger toward the crappy hands we had been dealt. I sat with this counselor and Kelson for an hour talking about the problems we were having. She had no answers. She offered no advice. She walked me out to my car and Kelson started one of his tantrums because he didn’t want to buckle into his car seat. She smirked and I so vividly remember watching the words,
“I don’t know what you are going to do. All I know is that he is never going to be an easy child” come out of her mouth.

Today, after finally getting through the most difficult conversation that I have had to have in my entire life, I have only 2 words for the counselor who saw Kelson and I 3 years ago, SCREW YOU! He is not a “difficult child.” He is not damaged and neither am I. He is going to get through this. He is going to be something great because there are good, caring people in the world like Mr. Loveless (the school psychologist), Mrs. Hulet (Kelson’s teacher), Mr. Heaton (Kelson’s principle), and Ms. Munz (sp? Special Ed teacher) who are watching out for him now. As hard as this day has been, I am more grateful than ever for the Iron County School District and Escalante Valley Elementary. FINALLY someone is here to help us. Tonight, I may feel just as lost as I did this morning but it is so nice to know that I am no longer alone in this battle.
The term “autism” still leaves a bitter taste in my mouth and a soreness in my heart. He doesn’t deserve this. It isn’t fair. Life just isn’t fair sometimes. But he is alive. He is strong, healthy, and happy. He is my hero. My tiny, knight in shining armor because tonight, as I tried SO hard to hold in the tears that wouldn’t stop coming; he held my hand, looked into my eyes, giggled a little, and said, 

“LET’S TURN THAT FROWN UPSIDE DOWN AND MAKE A MUSIC BIDEO (video)”


…so tonight, the evening following the day that my deepest fears were confirmed, we made a music video to Lady Gaga’s Born This Way.
Someday, I will look back on this day and I won’t remember the terror, the anxiety, the anger. I will remember the way we danced… how we laughed… and laughed… and laughed…