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?
Well meaning people often ask, “How are you?” Sometimes this question comes from acquaintances you may see only occasionally and at other times it comes from friends and family. Most socially acceptable rules will tell you that you should just say “Well” or “Fine” and then ask the questioner the same. Well, I, as an Autism Mom often have an internal discussion on whether or not I am going to be truthful and if I am, exactly how truthful will I be? See, contrary to popular belief there are degrees of truthfulness. Casual acquaintances usually get the socially acceptable answer from me and I get the same from those who include me in their ‘acquaintance’ list. But for those closer to me, whom I feel may actually want an honest answer, I spend seconds scrolling through my mental rolodex (that’s an old-fashioned contacts list for those of the internet age) so that I can answer this question. Why is this so hard for me and many other Autism Moms? Read on. It is hard because I am constantly exhausted! I don’t mean the kind of exhausted you get where a good nap or extra sleep time will leave you feeling refreshed and ready to tackle that Mt. Washmore or Filemore waiting for you. I mean exhausted in mind, body, and soul. NO amount of sleep is ever enough. I am always on, always on high alert for the next fire to erupt, to try and read the small nuance that says today is going to be especially tough. Always defending, always explaining, always learning and discarding in an effort to give your child the best possible advantage. Most parents want the same, they want to give the best possible advantage to their children so that they can be happy and successful. The difference when your child has a disability or other challenges that set them apart from society’s idea of the norm, is a gaping gorge as large as the Grand Canyon. You can see where you want to go, but the road is winding, going up and down and around 100 year old trees, rock formations, and streams. It curves back on itself, there are wild animals at every turn looking to see if you might make a good meal, and every 2 steps, your travel companions has to stop and see the varying reds apparent on the rock to their left. I recently read an article that so accurately described the kind of stress induced exhaustion I live with that I wanted to share it with everyone. Back in 2009, Michelle Diament wrote an article on the site disabilityscoop.com entitled Autism Moms Have Stress Similar To Combat Soldiers. (Go ahead and click it to read for yourself) This article is based on research where a group of Autism Moms were followed, interviewed, and had their hormone levels tested. What they found was “that a hormone related to stress was extremely low”. In a nutshell, these Autism Moms experienced so much constant stress that the ‘stress hormone’ didn’t even react to the daily stressors of their lives! And according to Ms. Diament’s article, the researchers reported that this phenomenon is “consistent with people experiencing constant stress such as soldiers in combat”! Now when I think of soldiers, especially those in combat situations and hostile countries, I readily view that as dangerous and stressful. I think to myself, I am so blessed to not have to be in such a situation and equally as blessed that their are women and men willing and able to bear under constant barrage to ensure the life I lead here in the USA. You know what I never thought of…myself or any of the many Autism Moms/Caregivers who are all just trying to get their kids of the finish line like every other parent! This month we are promoting Autism Acceptance. Many in the Autism community are invested in making sure you know that Autism is not a death sentence, it doesn’t mean a person has nothing to say, or any worth in your community. It is not a disease to be cured, it is a people to accept and learn and love, the same way you do with everyone else in our sphere of influence. And if you have an Autism Mom in your life, remember they are under a type of duress most don’t have to face and they do it daily, so if you have it to give, share an extra bit of love and kindness. It goes a long way to counteract that stressful exhaustion.
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