I know that we are writing a story. I know that in every good story there are plot twists and antagonists. I know that there is going to be mystery but what if that story is constant stuggle? Is there a point in the comings and goings of characters where the story loses its vigor? As I travel my way through watching a show from season to season there are episodes that i have to push to get through because of the boredom but then it picks back up a few episodes later and i say “ahhhh so that’s where they were going with that”. Maybe that’s what life is like.
As i watch him struggle in some areas like urinary accidents that weren’t a problem a few months prior while watching him excel in other areas like communication and understanding I cant help but sit perplexed and stagnated. I want to find out what changed to make his potty accidents increase but at the same time I don’t want to change anything because of his increase of reciprocal communication. I sit in a state of constant anxiety because i cant seem to figure it out. Not to mention our therapist center we had been working with for over a year decided they could not contend with the behavioral issues at hand and have given us a thirty day window to secure services with another company (which is next to impossible after you jump through the insurance and evaluation hoops not to mention the wait lists and team formations). SO i will be left out in the open to figure all of this out on my own once again.
Yesterday after a small medical procedure I had done I awoke from anesthesia and my first words were “why wont anyone help him” as I sobbed. The nurses just stood in the room unsure of what to say knowing that i was not yet fully in the world with them. As i came to a bit more i began to apologize and as I cleared more i went silent and began joking with them something completely off topic. But as i sit back now and think about it I remember dreaming about it while i was “under”. It’s all I ever think about. Sometimes as I smile with people in conversation I cant help but realize that the smile is not really a smile at all its a cringe. It’s a pained expression hidden behind giggles and laughs.
Yesterday, after my procedure i went home and I couldn’t rest. Still sore and groggy I knew there was no rest in store. When you have a child with special needs there are no sick days. He walked through the door and I took him to the bathroom and gathered my things and ordered Chinese (knowing I couldn’t cook in my state) I drove us out to the Chinese restaurant and we walked in as he clutched my phone in his hand. I set him down at a table as he flapped and yelled happily as he watched the PBS Kids jingle for the seven millionth time and couldn’t help but see the woman waiting by the wall staring at him. I got angry. I usually don’t get angry. As I walked still a bit slunched over from the pain i paid for the food, walked over, grabbed aiden and began to lead him out the door when I heard her lean over and tell the person next to her that “he must be retarded”. Now, I realize that she is older and that is the school of thought that they held and just continued walking as the tears built up but never fell. I got us into the car put the food on the floor so it wouldn’t fall off the seat in transit and turned to aiden for the “1…2…3 give it to me” talk but he resisted giving me the phone. Knowing that David was going out of state the next day and would need the left over data for his trip i knew this was a battle i was going to have to win. So i slithered out of the drivers seat wincing with every movement and grabbed it out of his hands as he looked at me angerly.
We arrived home before my other children’s bus was set to arrive so i sat and ate and put his favorite noodles on his plate and tried to get him to sit and eat but this battle would not be had today. As he ran back and forth grabbing handfuls and dropping food as he ran i just sat there watching the mess I would have to clean later grow but i was in no condition to stop it. I was empty both physically and emotionally. I stepped into the back yard to take a breath of fresh air knowing that this would be one of the last days that the weather would be good before the snow hit. But the moment i stepped outside i looked over and saw that he had taken everything not secured to something in our second story bedroom and threw it out the window. I just sighed and began to pick things up calling Caleb (Aiden’s younger brother) to help me to pick things up as I praised him and thanked him for his help. Another scentsy warmer broken I thought to myself as I picked up the pieces defeated.
By the time my husband got home I was depleted, void of any energy and if I’m honest hope. He told me to go rest but then he was tired too. We both layed down and before i knew it he was snoring and i was angry. I got up to check on aiden and he was sitting in his sensory swing in his room with the ipad and all I saw was the puddle underneath him. I lost it. I got mad at my husband, I got mad at aiden, I got mad at Autism and I got mad at myself for not maintaining control. I began to yell at my husband “YOU KNOW I HAD SURGERY TODAY RIGHT?! RIGHT?!” And he grew on the defensive and all hell broke loose. There were hurtful words passed, there was anger hurled and uncontrolled frustrations at the whole of things.
As I put aiden to bed I couldn’t help but feel that I had failed. This seems to be the most of my feelings as of late. I feel like I’m failing everyone including myself despite my best efforts. I feel like everything is swirling all around me and nothing makes any sense. My brain feels like a puddle of mush as I try to figure out this thing called autism that really makes no sense at all.
As I grasp at straws trying to figure this out and the people I had put in place to help us continue to bail as things get harder and harder I cant help but wonder when I will have to say I can’t do this anymore. IF even the professionals who are only here six hours a week are bailing who am I to think that I can do it 24/7? But then I think about the whole of things and what waits for him out there. If I give up then he has NO ONE. If I give up then what am I teaching my other children? I feel like giving up isnt an option. So then, how do I navigate this? How do I plan for the rest of MY life? I know I need to start with forgiving myself. I need to be more gentile with myself when I lose myself in anger or grief. Sometimes I need to let myself sit and mourn its part of it. I need to stop comparing myself to the other moms who adorn perfect makeup everyday and just be content in my yoga pants and hoodies. I need to stop striving for perfection and instead strive to be the best I can be. I need to stop hiding the fact that I’m tired. I need to stop hiding the fact that apart from my years of inpatient and my degree in psychology I have absolutely no clue what I’m doing. I do know that I’m doing my best. But the hardest part is that I am seeing that even my best isn’t good enough in this case.
Everyone tells me to “take care of yourself” or “you need time for you” truth is I don’t even know who I am anymore let alone what I would do with “free time”. I don’t even know what this world is like anymore. Autism has taken over my life in a way that cant be described. I cant make sense of anything and the darkness of people has been shown to me in a way that I cant seem to let my guard down much. I’m so angry. So disillusioned. It’s hard to strive to see the light at the end of the tunnel when it seems that everyone on our journey continues to bail when things get tough. But me, I’m still standing here right at his side. I’m watching a boy who doesn’t know he needs help and I’m trying to save him as the waves come crashing in harder and harder. And even though there are bad days and trials when this journey began I promised him and myself that I would remain steadfast in my promise to keep him home and protect him and this is still a promise I’m holding to. Even if its not always graceful this is my burden to bare and I have my moments of questioning my resolution to my promise I know deep down giving up it not an option and that is what keeps me going day after day. And this will always be Life as we know it. And that’s our story. A story based on Love that knows now bounds even when the world doesn’t understand the sacrifices made I will continue on knowing this is our story to write. Not the worlds.