I wanted to give everyone more than one post last month, but it didn’t work out. It failed on an epic scale. Now you may not think that it was a fail, but I don’t have another word for it. The month ended up being full of sorrow. Read on to hear my heart.
How It Started
Last month started with a post full of my high hopes as we went into Autism Awareness month. What I got was days fraught with contention, lies, anger, impulsivity, and sadness. Do I know these things are part of living with my son? Sure I do. Do I long for the day it isn’t like this? Yes, yes, yes! I have spent many days in tears on the floor wondering why. I despair of a life I don’t even know.
The proverbial straw that broke the camel’s back was a day that started pretty good. Not too many preteen rebellion rearing its ugly head. Well, as we trooped to the car to go to school, it devolved into a maelstrom of refusal, unpreparedness, fear, and sadness. I had to let go, watch my son go into almost certain failure based on his poor decisions of last week. It is heartbreaking and hard to watch your kids fail, even knowing that there really wasn’t anything you could do.
The Common Struggle
Don’t we all feel like giving up sometimes?
I have long realized I struggle with sharing his burdens and challenges. For instance, I spend a lot of time saying “We have a problem.” instead of “He has a problem.” Many of the first few years of his diagnosis I spent advocating for him and trying to find the best group of practices to help him thrive. For me, what has happened is that I have glossed over some of the things he can do for himself. I get way too emotionally invested in whether or not he succeeds at something. But also whether or not he fails or remembers.
Kids’ behaviors often trigger moms emotionally. From talking to my friends with neurotypical kids, they struggle with this. For me, it is an even stronger tie based on my own history. This is a perfect storm of a child who struggles with impulsivity and anger and a parent who internalizes every confrontation as a confirmation of how horrible they are at this.
The Failure
The day I let him fail, made me feel done as the day unfolded. He struggled a lot last month and it felt as if there were 30 days of chaos. Both in my head and in my home. Feelings of sadness and anxiety and lots of crying after realizing there was going to be an imminent failure. I could not snap out of it. There was no emotional stability. I wanted to give up. The secret here is I often want to give up.
I know I’ve said it before, but I won’t give up on him. Or me for that matter. But the truth is, I live in sorrow a lot.
Once again, it is April and we find ourselves in Autism Awareness Month. I have written about it previously and why I am on board with Autism Acceptance and not (just) Awareness. You can read about my thoughts here. This year, I am going to show you two views of autism at our house.
Sometimes it is BAD
Picture of five people walking in a desert with the words “This is Bad” written across it.
Recently my son decided he did not want to go to his expected appointment. I decided that he was capable of doing so, therefore he would go. It didn’t end well for either of us. A bit of backstory, he works better when he has advance notice of places to be or things he has to do. Even with knowing in advance, he needs constant repetition for it not to feel overwhelming to him.
Fast forward to the day of his appointment. He knew of this appointment, it is recurring as a matter of fact. I had done my due diligence in reminding him often, the last being just an hour before. Once the time came to go, he felt bad and refused to leave. I assured him that he could talk to the professional and assess whether he could complete the appointment. This was a strategy we had come up with the last time this happened. He continued to insist that this time, that was not going to work and he didn’t care what I said, he wasn’t going.
Now, a lot of my parenting is spent keeping my inner 10-year old from coming out to eviscerate anyone it feels is out to get me. This often means my kids. They are not really out to get me, but the push back sounds like it to my inner kid. Keepiing that inner kid quiet looks like me speaking in calm, quiet tones. Not engaging when I am told how much I’m mean and hated. Walking away whenever the verbal attacks feel like too much or morphe into physical attacks. Most of the time it works and we can all reset and address the problem.
It gets WORSE
Pictue of red flames on a black background, the words “Then it was Worse” written across it.
That didn’t work this time. It failed spectacularly, with fireworks and club music as accompanying background. I started off well. I repeated what he should do, what was expected, how we could compromise and he still refused to budge. His refusal went so far as to have him falling on the floor in abject horror at the very idea. I realized I was not going to get him to move and had to accept it. Next was to move on and make sure I followed through with the expected consequences.
When I tried to walk away, he decided that was not acceptable. He then locked his body around my feet and legs in an effort to ensure I did not walk away. This was the beginning of the end. No matter the calm I had been able to foster up until this point, I now lost all of it. I ended up in fight to keep myself safe from my own son. I was heartbroken and wrong and devastated at what I saw as my failure to be able to handle anything.
But being able to handle everything is not the mark of a good parent, it isn’t the mark of a bad one either, frankly, it is just a lie we have told ourselves. Where does it say we are supposed to handle every situation with grace and aplomb? Nowhere I have found. I spend a lot of time with my son, schooling him, transporting him to appointments, and everything in between. Somehow, I still fall into the myth that I am in control of him. Well, I am not. I can not control him, just as I can not control any other person. At the end of hours of back and forth, I felt defeated and torn apart by the actions and words we had inflicted on one another. I wanted to give up, and I probably did for a few hours at the end there.
Other times, it is awe-inspiring
Phot of a field of white and blue wildflowers, the word “Awed” is written over it.
My son has a keen and quick mind. It is often used in myriad efforts designed to make his life easier. Unfortunately his idea of easy, is really just him cutting corners and trying to get the most with the least effort. This sounds like a terrible thing, and in some cases it is just delaying the inevitable. Sometimes though, he comes up with great ideas that work well, especially for him.
There was the time he made grilled cheese by toasting bread, buttering it, then melting cheese between the slices in the microwave. All because he didn’t want to clean up a pan, nor wait for it to heat up. I may not want to eat this type of grilled cheese, but he loves it, can do it himself, and doesn’t leave a mess I have to beg him to clean up later.
There was the time I realized he saw adding three digit numbers and multiplying as patterns he broke down in his head to get the right answers. I would require him to show his work as he started working multi-step problems. My son would balk at the very idea of writing any more than he absolutely had to in order to get the answer. Often, in his mind, this meant he only wrote down an answer. I finally stopped complaining and cajoling and asked him how he got the answer.
Then he explained himself and my mouth dropped open, I had to ask him to slow down and repeat himself. The answer was a complicated, to me, series of patterns that he saw clearly and used to come to the answer. I have taken several higher level math courses and had never thought in the ways he did. Some of his ways were better for understanding what was going on anyway. And that should be the outcome of education. We should understand so that we can then apply it and answer problems. We should not be memorizing facts that last for a year or shorter with no way to translate it to the next step.
Nothing is dull
As in many areas of our lives, life with him is good and bad, up and down. What it isn’t is a death sentence. It isn’t a sad thing. He struggles with some things, at others he excels beyond my imaginings. Life with him is not what I pictured when I found out I was pregnant. In many, many ways, it is so much harder and painful. Yet, when I stop focusing on the difficult, negative things, I see the great beauty of viewing life the way he does. It is quirky, and funny, and wild. It is full of breath stopping hugs and kisses on your arm when you least expect it. He brings a dimension to our lives that only he can. And I know, God made him for just such a time as this.
I challenge you to accept, not only the autistic people in your life, but anyone different than yourself. Different isn’t bad, or wrong, or made to be hidden. Different is, just as the sun is. And you wouldn’t want to be without the sun, would you?
It is hard to put yourself and your struggle out in the world. For me, when I write a post that is personal, it is in the hope that my current reality will reach and help someone. It is also cathartic. So, in that vein, this post is about the struggle of impulsivity on our family.
Impulsivity is associated with a number of diagnoses, such as Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), and anxiety, all of which my son has. It is like a perfect storm of impulsivity in his little body. Impulsivity is characterized as acting on a whim, with little to no forethought, or consideration of the consequences. Now imagine that you have what I like to term as an overdeveloped emotional quotient. I envision this as being heavily influenced by the constant ebb and flow of other people’s emotions and your own. For example, your friend is having a day where they really need space, some down time and don’t really want to hang out or talk. You can’t understand this temporary change of normal interaction you have with your friend. This leads you to be upset, to question whether or not this friend likes you anymore, to dissect their interaction with everyone else and casting yourself in a bad light. Since this is happening in your head, you can’t focus on your work, or your other friends, and you become angry and unable to exhibit expected or required reactions to anything else. Your entire emotional health has been upended by a perceived emotion of this friend. So, you have been influenced by your friend’s emotions and your emotions have become explosive as a result. Think of it as not only being sad by someone else’s misfortune, but devastated and you feel out of control and unable to think through the consequences of your choices. Now imagine you are a prepubescent child with this added struggle. Do you see the recipe for constant upheaval? I do, but recently I realized that this overdeveloped emotional quotient can enhance the impulsivity towards the negative.
Often, the inability to control impulses is characterized by lying in our house. The unknown consequence of truth-telling when you know it confesses wrong doing is debilitating and therefore you lie hoping no one catches it. This lying then becomes the idea that your family can’t possible love or like you because you can’t get it right. Every time you mess up even the smallest bit, your mind tells you that you are a terrible and unlovable person. This is when impulsivity may lead to harmful actions. But you don’t recognize that harmful acts mean you are physically injured.You act without thought that running into the street can lead to pain, you act without thinking that hitting yourself can be damaging, you can believe that not being around is better than being terrible. But you don’t realize that not being here is permanent. We must recognize that these thoughts and actions may be indicative of depression also. Depression is not only an immense sadness, it is sometimes the inability to process emotions and thoughts which leads to dangerous impulses. Many medications used to treat symptoms exhibited by those with ASD, ADHD, and anxiety may cause depression. You now have a diagnosis that increases lack of impulse control and are given medications that may lead to depression. Recently we had the misfortune of learning how destructive this intersection of impulsivity and depression can be. My son was incredibly upset by emotions of others at school, then struggled to make good decisions and choices, which then led to him impulsively exhibiting self harmful actions. Our response has been swift in hopes of helping him understand that even when you don’t want to harm yourself, taking actions that could lead to harm can easily turn into being harmed. That being harmed is permanent, that our lives aren’t movies or television where the hurt and damage isn’t real. He is constantly battling the emotional part of his brain trying to take over and he barely knows what that means.
I continue to learn that we have a long way to go to understand what mental illness can look like in children. There is a great need to research how we can help our children when mental illness is present with other illnesses of the brain. But, I still have to go figure out, with the professionals, how to treat this adolescent depression and keep my son safe. I fumble with the words to reassure him that emotions are a fact but our reaction to them is ever evolving and in our control. I try to help him understand that he can review his day and recognize where he might be influenced by negativity in someone else. This is a hard thing when awareness of others and self is still an emerging skill. But, he has always been a hard worker, so I am encouraged that he will put his tenacity to work here.
This Mental Health Awareness month, I hope that you are educated on how impulsivity and mental illness can coexist, that you can love and support someone who struggles with this, that you can see someone you love in here and seek help. I hope that we continue the conversation, the education, and the support so that no one is left to languish in the convergence of impulsivity and mental illness.
I wrote the following words earlier this week: As I listen to the discordant, high-pitched voice trample my love and concern, I dream of the day I don’t have to be my own champion. I wrote them in a fictional setting, but these sentiments follow me into my real life quit often. I thought I had gotten to a place where I wasn’t quite so invested in the behavior of my number one son. I tend to take it personally, though I know he has a number of medical diagnoses that exacerbate the severity of his behaviors, that the words he screams in anger don’t mean anything to him. Yet, I keep running to my room in tears, with my heart-broken and my body heavy with the weight of despair.
I have written in the past about my autistic son who also suffers with anxiety and oppositional defiance disorder. So, he has trouble with executive functioning skills, he has poor memory, he is terribly impulsive, and can’t stop talking to save his life. Also, like most children, he is the center of the universe and wants what he wants. Lately, he has become aggressive again. This time around he is bigger and stronger and louder. I leave rounds of aggression with him and am covered in bruises, and two minutes after he calms down enough to apologize he inevitably acts like there wasn’t a hurricane of emotional tantrum with him at the center. Right this moment, for the second time today, he is screaming about how hurt he is, how much we hate him, how we don’t listen to him, how it is basically our fault as his parents that he is screaming and kicking walls loud enough for the neighbors to be concerned. He is harming himself and breaking our hearts and I don’t know what more to do for him. Have you ever wanted to give up? I WANT TO GIVE UP, I WANT TO GIVE UP, I WANT TO GIVE UP! But I don’t. I DON’T give up. Every day I get up and do it all over again, because he is my child and I love him. But, I am not going softly into the abyss. I continue to work at getting him the best medical care and therapy I can. I am just really afraid that one day soon, the decision on how to care for him will be taken from me and my husband.
Does he understand what he is doing and uses the extreme behavior as a way to escape the things he doesn’t like and doesn’t want to do? Does he really not remember, or understand how he is hurting himself, how he is hurting those around him? I feel I no longer know what is prepubescent boy and what is ASD, or Oppositional Defiance, or Anxiety. Hell, maybe it is some nice combination of it all. That is usually how this works, right? Hardly anything dealing with the mind and body is completely autonomous and I should know that. Only, it is hard to be dispassionate and calm in the face of such anger. I know that I want him to accept and respond to help for this latest crisis, I want him to not only realize his potential but reach it too.
I am scared. I am tired. I am hurt. I will pray and continue looking for a good therapist to add to the roster. I will get up every day and do it all again.
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