Have you ever stopped to look at the world and thought “how did I get here? Where is everything I had dreamed of? Where is the love story? Where is the safety?” This is not at all how I had this pictured.
Today, as my middle child yelled and screamed in the other room talking through sobs because his other brother (who is severely autistic) bit him in the back while trying to take the PS4 remote for the 200th time I stood there looking at the apparent anger in his face and couldn’t help but feel like a failure. I took the PS4 and hid it from the entire family and sat down at the table and cried. I failed to protect him but then, I remember how many times I had told him to just give him the remote and come to me whenever he tried to take it away. Its the idea of “help me to help you”. Regardless of the fact that this is not normal in the everyday life of most eight year old children I, at first, showed concern and leniency and later, once everything had calmed and the pain had subsided I sternly but gently reminded him that he needs to listen to what I tell him because I tell him things to protect him. “give him the remote, come get me and I will fight for you” I said.
This morning I woke up, picked up the pre-ordered groceries, mowed and weed whacked the lawn all by eleven am (trying to fit this all in while my sons therapist had him and I wouldn’t have to run in and out panicking that he had somehow left the house or was on the roof again) and as I walked behind the lawnmower I couldn’t help but contemplate what I thought that life would be. There is a certain anxiety that had settled in my soul about my children and what I may or may not be doing wrong in raising them. I couldn’t help but think about the door alarms, the toilet paper I have to hide, the calls from school social workers about the behaviors of my middle child, the times I have found Aiden on the roof or in a police car or even the times I lose my patience and yell at a boy that can’t understand and feel defeated.
After telling the ABA therapist that I was going to take a shower and obtaining her go ahead I grabbed my shampoo and changed the shower head setting and just stood there in the hot water. I thought about how alone I felt and how one day just leads into another and then another with no real breaks.
I have caught myself feeling more and more angry lately. I feel like I am on the front lines alone. His therapists aren’t listening and I can feel the desperation setting in once more. I have been pulling away from people more and more as everything around me seems to continue crashing in as I just sit there unable to hold it all together. As I sat the other night scrolling through some of my old blog posts on Facebook I found evidence of a theme even though it was not my intention almost every post though about autism in the foreground really talked about kindness and acceptance. I began to ponder what was leading to all of this talk in my soul. I thought about why my soul keeps coming back to this even before Aiden.
I thought about my already discontent spirit as a girl. I thought about how I had never really fit in and about all the bullying I had endured. I thought about the days I would walk in the entrance of the school and right out the back door just so I wouldn’t have to be there. I thought about the days that I would get home from school and just go right to sleep because I was so exhausted from fighting my way through the day. I thought about the night my mustang I had owned for just three days had been egged in the ice rink parking lot by an ex-boyfriend and had to take it into the zamboni bay to clean it off before the paint faded. I thought about the nights I would sleep in my car in the driveway because I just didn’t want to go into the house because I didn’t know who my dad was that day whether he was in a good mood or a bad one. I thought about college and all the failed relationships. I thought about working at the pet shop in town for the town drunk and how mean he could be to me for no reason and how my heart would pound whenever he was around. I thought about the psychiatric unit and how for the past thirteen years I continue to walk onto the cold unit where obscenities, urine, feces and whatever is not tied down to something is thrown at me for no reason other than I am trying to help them and yet this is one of the safest places I feel sometimes. and last but not least, I thought about my son, and how none of us asked for this. We didn’t ask for autism. we didn’t ask for screaming. we didn’t ask for therapists who don’t care. we didn’t ask for any of it but yet here we are facing it day after day.
There are times I just sit and stare out the window and wonder what God is doing with me. And I know that everyone eventually comes to that point. I guess I am at the place where I am looking for that one safe place. Not really sure where I should be going or what I should be doing I just keep coasting. Knowing my soul is not content. My soul is sad. My soul is tired. I continue cheering on those around me because that is what I would want from someone else. As I try to contain the chaos not only in my life but inside of me I find that I am losing more and more control of everything. I guess that just comes with the territory of mental illness. So many construe autism as a disorder forgetting that it is in the DSM (Diagnostic and statistical manual of mental disorders) which basically means that it is a mental illness. and I have heard it said that mental illness is often harder on those around the individual with mental illness than it is on the person actually affected. Let me tell you this is so true. Its the unpredictability of everything that gets me the most. That and the isolation that comes with it. Its not something you throw an antibiotic pill at that makes it all better and sometimes I just stand there staring at him as he chews the eraser off yet another pencil and think this behavior appropriate “theres no erasing this. this is what it is.” as i pivot and look behind me to see a therapist texting on her phone because he is on break.
My head is always so full. I forget everything. I can’t tell you how many times my co worker (thank god for him) has found my planner at work and put it safely in his locker for me. Even my autistic kid when he finds my keys throws them in the clean dish strainer so i wont lose them. Its not just the tasks of life. Its the emotional endurance it takes to survive a day. Its hard to constantly fight for someone else when deep inside you yourself are falling apart. But that’s what I do, everyday. I fight.
I wonder where my wonder for the world has gone. I feel like I am just surviving. and the hardest part is knowing that God can fix this if he wanted to but he doesn’t so I sit patiently. I try to find the beauty in everyday. I try to place the beauty in the interactions with others on the same journey but some days that’s hard. Like today, as I pulled his wheelchair out of the back of the van we use only for restraint purposes I couldn’t help but feel angry. I can feel my physical strength depleting as I approach my mid thirties and that 50lb wheelchair is becoming more and more difficult to lift in and out of the van and I fear there will come a day when I won’t be able to keep him home as he continues to grow into a man.
I guess this is all a part of growing up. Trying to find contentment despite all the realities you have realized in the world. Its about choosing to smile when its time and cry when its time. I guess its about compartmentalizing and living in the moment that you are in. I think the greatest lesson I should be learning and practicing at this point is being where I am when I am there. I need to stop thinking about all that I am missing in the world when I am home because I am not out there I’m in here. I need to focus on the lessons and not on the struggles. I need to see the beauty of the boy in front of me instead of seeing the struggle and allowing the fear of his unknown future to overtake me. And as far as my other children, I need to let them feel what they need to feel without analyzing it. I need to stop leading their journey instead I need to step back and support them on their journey.