A Different Kind of “Tired.” And an Aut-Nado.
I’m exhausted: not in the typical “Parent/Mommyhood is CRAZY,” kind of tired, but a different type of tired: a new, unfamiliar type of tired that doesn’t seem to go away. I’ve been trying, unsuccessfully, for weeks now to find the words to describe this “mental fatigue” to my husband. My hope is that other ASD parents have felt similarly, and can advise me on how to move past this.
See, I have technically been the parent of an autistic child now for 12 years. However, his diagnosis wasn’t formalized until this past school year, and that is how I know this is a different kind of tired. It is since his formal diagnosis that I have experienced this “different kind of tired.”
I keep saying “my brain hurts.” That is the only way that I can describe how I am feeling. The past 6 months has been a whirlwind for me: from the crushing blow of the initial diagnosis; to the grieving process; to the realization that my child will require up to 40 hours a week of therapy; and the guilt of not intervening sooner; amongst countless other things. It’s been a doozy on my whole family. It’s like an autism tornado (Aut-nado? Another great movie idea?) has ravaged or lives and flipped everything upside down.
But, instead of looking around and seeing the devastation – you look around and everything is the same. Now after a tornado, if you look around and everything is okay, most people would consider themselves lucky. Or they would just summarize “Oh, thank goodness Toto, we are back in freaking Kansas.”
However, after an “Aut-Nado,” when you look around and everything looks the same, a feeling of despair swells over you. See, everything you are doing is supposed to make things better. That is why you are doing 40 plus hours of ABA (Applied Behavior Analysis) a week, plus speech therapy, occupational therapy, social skills groups, and tutoring. This is why all your time is spent trolling websites and researching article after article, trying to make sense of the vast amount of information, and misinformation, that is available to us. This is why you are doing so much: you are wanting to see a change.
As a newly diagnosed ASD parent, our mind is constantly learning. We are learning from the books we are given, we are learning from our children’s therapists, we are learning from the research that we are constantly doing, and no matter what it may appear we are doing — we are constantly learning. For every answer that we find, we uncover a dozen (or more) questions. Is my childs’ behavior due to his autism or his AD/HD? Where do I draw that line? Is he fidgeting or stimming (there is a difference.)? How do I de-escalate this meltdown? What did his ABA therapist tell me to do again? I’m supposed to make this quantifiable, how do I quantify the fact that I want him to sit still?
From every angle we are getting parenting advice. The best advice comes from our newly adopted autism ABA team-members: they really “get it” and they are able to make some sense of his illogical behavior. Sometimes good advice can come from fellow ASD parents, which we spend all our time chatting with online, but even then sometimes we will receive conflicting information. Then everyone else seems to chime in: even people that you haven’t seen or spoken to since high school want to chime in. My favorite is always the advice from people who not only lack experience in dealing with an autistic child, but aren’t even parents at all. This crowd is notorious for saying things like “autism isn’t real,” “autism is over-diagnosed,” “autism is just due to bad parenting,” “You just need to be more firm! ” and “your child doesn’t seem like they have autism, are you sure?” Five minutes alone with him, and forty five illogical questions later, and I assure you, you’ll pick up the ASD vibe, my friend.
But I’m a good friend and a (relatively) nice person so I try to focus on that persons good intentions. I tell myself “they are just trying to help,” and then spend another half hour educating them. This takes time and energy away from the ongoing research that I’m constantly doing, as well as time and energy away from the seventeen other things I need to be doing.
In addition to all this “mind work” that’s battling inside my cranium, there is the ongoing battle with the school system. Apparently, when a child has higher-functioning autism, and their grades are average or better, then they don’t need any educational supports in place, according to our local school board (the Americans with Disabilities Act, or ADA, and the Individuals with Disabilities Education Act, or IDEA, would vehemently disagree). As parents of a child with autism, more energy than one could imagine is expended fighting the school system for simple accommodations that (ironically) don’t even cost the school a single penny. For example, accommodations like allowing the child the opportunity to leave the classroom when they are feeling overwhelmed, or to change out for PE in a private bathroom, are nearly impossible for a child with high-functioning-autism to get. So, instead of your child being protected, what happens instead your child is tortured, taunted and bullied by both the other children and the schools staff: every single day. Every day you send your child to school, you can make a pretty big bet that something horrible will happen to them, and when your child comes home, you will have lost another puzzle piece of them. Soon their behaviors regress at an exponential rate and they begin having nightmares. Suddenly getting them out the door in the morning becomes almost impossible: not because they dislike school, but because they are afraid for their safety.
So while you fight the school, you also worry about the psychological impacts of sending him to school every day. At this point, if I’m able to avoid long term PTSD with my child, it will be an absolute miracle.
On top of all of this, your child is still exhibiting the behaviors that prompted you to seek help in the first place. In my household, that’s hundreds of questions daily (many of which I have no answer), meltdowns over everything, a lack of social understanding and awareness, over-stimulation by normal/ordinary things, a very rigid, and exhausting way of thinking, and a constant need for him to be in our “space.” I will honest, I am more patient than most would be with my child. Partially because I’m so very fond of him, and partially because he is an only child, and over the years I’ve developed quite a “Cassius tolerance.”
However, when it is 9:32 pm, I’m out. His bedtime is 9:30, and if it gets past 9:30 and I’m still dealing with meltdowns and his rigid thinking, I lose my patience. Fair and square. As I’ve learned more about autism, I’m trying to find more patience and understanding. At first, I was doing okay.
The past few weeks, though, I’ve noticed that fuse is getting shorter and shorter. When asked what is wrong, the only thing I can say is “my brain just hurts.”
My brain is tired from the meltdowns.
My brain is tired from explaining his social awkwardness to strangers.
My brain is tired from his rigid thinking.
My brain is tired from all the questions.
My brain is tired from explaining everything to him.
My brain is tired from being “on” the job 24/7.
My brain is tired from trying to learn so much about how to appropriately handle his stimming and meltdowns according to ABA theory.
My brain is tired from fighting with the insurance company
My brain is VERY tired of fighting with his school.
- My brain is tired from fighting with him and my husband about him.
And my brain is tired from all the hours of therapy we are initiating, only to look around my house and see that everything seems the same. Sometimes it feels like the only difference now is that I am insanely busy and overwhelmed.
I feel it’s important to emphasize that this a new kind of tired. A tired I’ve never before experienced — even when I was working two jobs, going to nursing school full-time and taking care of a kiddo while my husband was on deployment. This is a different type of tired: a type of exhaustion that doesn’t improve with a nap or a good night’s rest, but somehow permeates into every conversation, every waking thought, and even my dreams.
I may not see the devastation around me with my eyes — but I can feel the devastation of this “Aut-nado” with my brain.
Granted, if one is looking for huge differences, one would be quickly disappointed. Cassius is making progress — and even if it is slow progress, it is still progress. This is a mantra I keep replaying in my head, over and over.
Which, now that I think about it, might make my brain more tired, but I digress.
I’m wondering if anyone out there has ever felt this way before? And how did you get stronger? I know that I’ll get through this, I just am not quite sure how.