Autism Caregiving and Mental Endurance

*Written on another platform July 26,2018*

Picture this it’s 630 am on a summer morning and while all the other kids are sleeping in on their summer vacations your kid wakes you up at 6:30 every morning It’s the same.routeine you hear him stirring, your door swings open and. You hear him unplugging the ipad you placed on the charger the night before in hopes for just one more hour of sleep in the morning.
After about ten minutes you hear the screaming in the living room downstairs and you sit stagnated knowing that really no one is in danger your autistic kid just stole the ipad from your atypical kid and your atypical kid wont fight back. Knowing that in a few minutes you will be down stairs playing referee and separating the two You take a deep breath and repeat some inappropriate words in your head and your day begins.
I took a tally today of the number of times my kid asked me the same question and when i hit 71 at 1pm i quit taking note. As i scurried around town today planning my middle sons birthday party i was already mumbling under my breath. “What else? What else can happen today? I had a near flat tire this am and everything i had planned for the morning fell to crap”. You see, i had planned to make my son a cake for his birthday party on Saturday and knowing that aiden would be home from school at 1215 i raced to get all the needed items. After purchasing all the necessairy items I realized this was already going to be a $50 cake and it wasnt even made yet! realizing this I packed up the kids and went back and returned everything i had purchased. After the last item was taken back i looked at the clock in the truck and realized only 20 minutes until aiden arrived at home and that meant that i would be stuck there for the remainder of the day.
This is where mental endurance comes in. Day after day it is the same routine. It is the same questions hundreds of times and the same battles. It is the isolation, the silence and the hyper vigilance. It is the constant state of anxiety wondering what will precede the next scream or the never ending fear of his eloping behaviors.
You see, i have alarms on all of my doors and one would think that would give me piece of mind and it does trust me. But even so, at least three times a day when things are quiet my adrenaline rushes and i run searching asking all the kids frantically where aiden is fearing that one time the alarms wont work. That’s just a small picture of the reality of it.
I have had people recommend i take anti-anxiety medications but often i counteract that recommendation with “but this is reality,. This is not some made up delusion in my head. I have seen him in a police car. I have had him run away. How is an anti-anxiety medication going to help to ease areality?”
I cant tell you how much self talk i have to do to get me through a day. I am my own therapist. I dont have time to go to weekly sessions. I don’t have time to sit back and feel sorry for myself. It is neither feesable nor productive. This is my life and to survive I have to focus on the logic. That is not to say that i dont have my moments. Those breakdown moments where i get angry or cry uncontrollably. I have those moments quite often but there are also those moments where i surprise even myself. Those moments where i can talk myself through the worst of moments like a professional without a hitch and walk away thinking “wow did i just survive that alone”?
Mental endurance… such a powerful term. I have read many articles how “autism moms have anxiety levels close to those of combat soldiers”…. Please do not think that i am, in anyway, or believe that what i face on a daily basis is even close to those who have stood on the front lines of war that is something i could not even imagine those are the true heros they are fitting for people they dont even know! What i will argue is that those with children of special needs dont have a discharge date. They dont have vacations they dont have honorary leave. This is a day after day after day fight. And that builds up my friends. There comes a point where it can almost become an obsession to keep your kid safe.
I cant walk into a store without first walking the perimeter scoping out if they have DVDs or not. WHether he is with me or not. And if i do find. A dvd i curse that damn thing in my head. And often ask silently “arent you obsolet YET?!”
In public you fear a meltdown because you know a battle will ensue and far worse than the embarassment is the fear that someone might misconstrue your attempts at passification as abuse not understanding that your kid is not “a brat” but rather is struggling and you are just trying to remove him from the situation using behavioral intervention methods.
Which leads me into yet another point. Autism parents as their kids progress in age and disorder begin to fear the police. There is a manifested distrust of those placed in fields of Law enforcement as the stories of officers unaware of autism symptoms arresting our children cross our news feeds on what seems to be a weekly basis. As we try to remain neutral we have to admit that we no longer see law enforcement (or any first responder) as a viable answer to our calls for help and so we manage as best we can behind closed doors and screwed shut windows.
Today felt unbearingly isolating. And as i swept my living room floor for the third time this evening I finally just set the broom down and said “forget it. I picked up my wireless keyboard and opened the notes app on my phone and just began typing and let it go. This after running across a post from a fellow autism mom venting about the hurdles of trying to get services for her son and coming along side her of her reminding her of my 5 year battle for help.
So next time you are stressed to the max and your kid asks you the same question fo the third time remember that there is an autism parent who was asked the same question over 200 times and not just one day but for every day for the past year. Take a deep breath. Answer that question and enjoy your kid. Because your kid is amazing.

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