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Taking control of chaos

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Stress

When Mac n’ Cheetos are more than Mac n’ Cheetos

Today, I promised my son Mac n’ Cheetos. He has been wanting to try them since he saw the first commercial last month, and I figured it would be easy enough to grab some as a snack tonight. I was so wrong.

We pulled into Burger King, and he excitedly pointed to the giant Mac n’ Cheetos picture on the order board. When the employee said, “We don’t have those anymore,” my boy said, “But the picture says they do, and I saw a commercial today. I want Mac n’ Cheetos.” I told the employee never mind about our order and pulled into an empty parking space.

As my son started a soliloquy about mac n’ cheese being his favorite food and Cheetos being his second-favorite food, I attempted to calm him down. “You said I could have Mac n’ Cheetos! You told me! They have a picture!” I offered alternative restaurants where we could buy mac n’ cheese, to no avail. I reminded him how much he loves mac n’ cheese from Boston Market and KFC, to no avail. His mind, thanks to autism, had locked onto Mac n’ Cheetos, and nothing else would do. He had been thinking about them for hours, and nothing else would do. He had planned his entire evening, the entire car trip, around those Mac n’ Cheetos, and nothing else would do. The order board said there were Mac n’ Cheetos, and nothing else would do.

I pulled out my phone and looked up other Burger Kings in our area and 15 pulled up. I started calling the 14 in whose parking lots we weren’t parked. Only one phone was answered, and that employee told me they no longer sell Mac n’ Cheetos, either. I looked over at my son and he was leaning against the car door, lightly tapping his head against the window.

“Hey, kiddo, if we can’t get Burger King, what do you want?” He tapped his head harder.

I pulled out of the Burger King parking lot and headed to another Burger King eight miles away. All the while, my son was tapping his head against the window. We found out at the order board that this location no longer carries Mac n’ Cheetos, either, even though the picture is still highlighted on their order board.

A full meltdown ensued, complete with wailing, head-slamming, and pressure hug. (Before anyone jumps in with, “He needs his butt whipped” or “He is spoiled,” a meltdown is far more than a tantrum. A tantrum happens because a child doesn’t get his way, and it is done for attention. A meltdown happens when a child simply can’t absorb or deal with a change in schedule, routine, or surroundings and is so overwhelmed that he loses his sh!t in epic proportions).

I wish to thank you, Burger King, for my evening. I wish to thank the two locations we visited for not updating their menu boards. I wish to thank the 13 locations I called whose phones went unanswered (with my luck, 12 of them still have the damned Mac n’ Cheetos). I wish to thank you for the gas and time lost due to the wasted trip to the second location. I wish to thank you for continuing to advertise an item no longer available in our area.

And this, folks, is what happens when you promise your child with autism anything…In essence, though, this wasn’t about Mac n’ Cheetos at all. It was about my son’s inability to roll with the punches and think on his feet. It was about his hyper-focus on one particular thing (Mac n’ Cheetos) over everything else. It was about my failure, once again, to fix a problem, and his realization that sometimes I just can’t. Sometimes Mac n’ Cheetos are so much more.

Teensy, Tiny Baby Steps

Parents of neurotypical children may not understand why this is such a huge deal. And that is okay. I, your autism interpreter, am here to explain it!

Last night I had to spend the night away from home (and away from my son) for the first time in years. This was planned a few weeks ahead of time, and we prepared him the best we could, with frequent reminders and reassurances that he could call me if he needed me, that I would be back today, that he is brave enough to handle one night without me. We prepared him, and I worried. Oh, he seemed fine with it. He just said, “Okay.” In the past, though, that “Okay”in response to upcoming events has been misleading, so I worried.

I worried because, despite my husband’s best efforts, my son simply has not bonded easily with him. I worried that, as usually happens, we would get to the day of the event (in this case, my leaving) and he would balk. That he would melt down at the sheer anxiety of living one single night without my close proximity. That this event would end like all of the past events that have become raging sh!tstorms.

My phone did not ring once. Let me repeat – my phone did not ring once. Not once did my son feel he needed to speak to me to reduce his anxiety. Not once did he feel so overwhelmed by my absence that he had to reach out for immediate reassurance. Not once did my husband feel so over his head that he had to call me for backup.

It was okay. I have no idea why…the social skills and executive functioning work the boy has been doing? The therapy? Progress with his anxiety? A slow (slow, slow, slow, slow) acceptance of my husband as a suitable, caring adult? All I know is that I was able to pull away and focus my attention someplace else it needed to be for one brief night…and it was okay.

Priorities

I have been feeling neglected and ignored lately. I think it comes down to a lifetime of doing everything I could to please others, to make them comfortable, to do whatever was necessary to keep the lid on the pending explosion from my father or ex-husband. In many ways, I have made positive changes. I no longer tolerate explosions at all. I no longer accept guilt trips tossed at me from the maws of those seeking to pull me under. Sometimes I put myself first. But not often enough.

I am 42 years old and have never had a birthday celebration of my own. Never. When I was a child, I shared a few parties with my younger brother. As an adult, I have baked him birthday cakes year after year, then watched my birthday pass by, unnoticed, a few days later.

Perhaps this is why it is so heartbreaking to me that my son has trouble with friendships…I want him to have those celebrations I never did. Hell, I would give anything for someone to think to throw a party for me. I don’t want him to have these same non-memories haunting him in his middle age. Despite his challenges, I want him to be recognized and cherished for the amazing person he is. Like I never was.

Recently, I graduated with my Master’s Degree. I did this while working full-time throughout my studies. I did this while beginning a completely new career. I did this while fighting a hostile work environment. I did this while sitting for and acing several career exams. I did this while juggling and putting out the fires that came with Dom’s diagnoses and therapies and routine changes. I did this while battling my own chronic illnesses. I did it, though. And the moment passed by. No recognition. No dinner out. Nothing.

I don’t believe this lack of recognition is necessarily the fault of those around me. I have trained others by minimizing my needs on a regular basis. I have trained others to dismiss my needs altogether, even to pretend they don’t exist.

Nevertheless, I have spent my life trying to accomplish enough, to be enough, to become enough, that someone would notice. That someone would care enough to celebrate me or even hear me when I speak. I am 42 years old and that has not happened yet. I am beginning to realize that if I want to be celebrated, if I want to be considered important, if I want my voice to be heard, it is up to me.

I am trying to reach the point at which it won’t matter that others don’t notice. For now, I am at the beginning. I have no idea where this journey will lead, but on the next nice weekend it will begin with a getaway celebration of me, of my son, of my Master’s Degree..the start of a new noticing of myself.

Put your head down and push through

So what do you do when someone you love and respect passes judgement not only on your son, but on your parenting? You put your head down and push through.

When someone says, “He talks to YOU, so he’s just being rude by not talking to me…” When someone says, “All he does is sit there and cry…” Especially when this person is an adult who should be able to put their own ego aside… You put your head down and push through.

When someone you love and respect tells you that, despite the fact that your life has been placed on hold to find the help your son needs, despite the fact that you have never had a real support system or break from special needs parenting, despite the fact that there have been times you’d give anything to have someone else take over for a while, despite all of this, you have been found lacking because it is sometimes all too much for you to handle alone… You put your head down and push through.

When your son is unable to tap properly into his emotions… When your son’s default reaction to emotions is to cry, but that’s better than where he was a year ago when emotions made him want to die… When he has made so much progress in so many areas of his life that you consider even this small gain a miracle… You put your head down and push through.

Because you know the truth…that in spite of the overwhelming panic and inadequacy you feel at times, you would  – and have – done everything you could for your son. In spite of the fact that you had to do it alone, you did it. And it has made an incredible difference in his life.

The Impact we Have

This will be my last year at my current school. It is closing, and students are being transferred all over the county. I will never see many of my kids after this year, and that has been difficult to accept. I call them “my kids” because they are…I help them grow their minds and their worldviews, and I can’t fully express how much that means. It is amazing to watch them adjust as they learn more about the world around them…I love teaching high school!

This year, I have had a lot of thoughts like, “What difference could I possibly make in this last year? It’s just one year out of their education.” I am used to having relationships with students over multiple years. Once they leave my class I still check up on them. My impact with this year’s students is such a tiny part of their experience that it couldn’t possibly make a difference, right?

This morning, a few things happened to change my thinking.

A student I’ve only substitute taught while her regular teacher is out came to say good morning, even though her class is nowhere near my room. We chatted a bit, and she hugged me when she headed off to class and asked if she could come by at lunch time. I have no idea what is going in her life right now, but I am honored to be a known safe person.

Two of my students were rapping in the hall, and one of them dropped the “N-word” as it is used in the song. When he saw me, he apologized immediately. “Mrs. Johnson… I’m sorry. I know you don’t like that word.” No, I don’t. And you shouldn’t. You’re better than that word. Remember that.

A student came by after the bell rang. I immediately told him I wasn’t going to give him a pass to get into class, that he had to go to the office. He held up a pass in his hand and said, “No…I came to see you! I’m going to miss you next year.” I told him I would miss him, too, and he asked, “Do you think I could have one of the books from your library to keep? And maybe you can sign it for me?” If you promise to read it, if you promise to read anything, yes! Yes! Yes!

This one year contains many moments in which I can make an impact on my kids. I had forgotten that in the emotional chaos of the school closing. I am so thankful for these reminders.

Overwhelmed…S.O.S.

It has always been incredibly difficult for me to admit I need help, probably because, for most of my life, help wasn’t forthcoming. Right now, I am unable to manage any single part of my life, and I don’t know how to fix it. I am completely overwhelmed, and it seems much easier to simply curl into a ball until everything passes by. I have been living each day in survival mode, simply attempting to exist until bedtime.

While Dom is making some progress in his speech-language and social skills, he has backslid in his self-care and independence skills. Self-advocacy has always been an issue, but it seems to be a much larger problem the older he gets. While other kids his age are learning to prepare simple meals, Dom sits starving until I ask if he’s hungry. If anyone else asks, his answer is no. If I don’t ask, he remains hungry until he gets sick. Simple chores require Herculean effort, as he regularly forgets how to do them, even when there are directions posted.  After five years of dressing himself, he still has trouble remembering all of the steps involved in that process.

His progress with social interactions has increased dramatically, but last Saturday we were back at Step 1 when his normal social skills therapist was out. Despite two weeks of planning and the inclusion of the substitute in those two weeks of work, Dom still refused to interact with the substitute at all when his normal therapist was not present. That day’s therapy session was a waste of time, and it served as a reminder that he still has so far to go.

Between Dom and some problems with other family members, I am an anxious wreck myself. As a result, I go through teach day in a fog, just trying to put one foot in front of the other.

I am in the midst of an ongoing battle with our insurance company to get Dom’s ABA therapy approved. Carefirst says the mental health insurance company is responsible, and that company says Carefirst is responsible, and the end result is that we wait. More time passes without Dom getting help he needs, and I get more anxious as that time passes by.

Today, as I spilled my guts and tears all over my mentor teacher, she asked me, “Isn’t there anyone willing to help?” My answer was, unequivocally, “Yes, but…” Her response was, “If you try to do it all, you’re going to kill yourself, and then there will be nobody to do any of it.”

I don’t know what parts of this chaos anyone could help with. I don’t know how I could foist Dom off on anyone, knowing that his reaction could be swift and severe. What I do know is that I’m going to break if things don’t change for the better soon, so if you can do nothing else, please pray.

To Worry or Not to Worry

I am a worrier. I have high anxiety and have always spent my life waiting for the other shoe to drop. I worry about money, car breakdowns, unemployment, illness, my kids, my kids’ illnesses, allergies, and on and on…endlessly. I worry even in the face of all logical reassurances. I worry even when I know I don’t really need to worry at all.

Today, I saw someone with a tattoo that said simply, “Choose Joy.” It took a bit for that to settle.

When it comes down to the most basic atoms of my worry, I choose it. Sure, I have an anxiety disorder that sometimes completely takes over and removes the choice from my hands. But my regular, day-to-day worries? Those are me choosing to worry, instead of pushing the worry out of my mind, where it belongs. Instead, I need to choose joy.

I am going to do a small trial…when I start to worry about things that are completely out of my control, I am going to start doing something instead that brings me joy. Whether that means spending time with my family, reading a good book, or getting lost in a Netflix binge, I am going to do my best to choose joy.

I don’t expect this to be easy at first. I am, after all, wired for worry after a lifetime of wrapping it around me. There will still be days when worry overtakes my life. But if I can have fewer of those days, if I can choose joy on some days, what a difference that would make to my life!

As I sit here…

My teaching day just ended. I should straighten up my room. I should change my board to tomorrow’s warm-ups, objectives, classwork assignments, and vocabulary.  I should call the building’s IT guru to figure out why the internet has been down all afternoon, requiring me to use my phone as a hot-spot to get my work done.

Instead, I am sitting here. As I sit here, I am wondering whether it is all worth it. It seems that my reasons for becoming a teacher are being slowly chipped away by a system more concerned about bureaucracy than students.

Today, my last class of the day was assigned a standardized test. Boring, oh so boring, but necessary. Not really for them, but for me. Because that boring test influences the student achievement portion of my evaluations. Only one student bothered doing the test.

Today, I spent my free period meeting with students about their grades and troubleshooting solutions with my colleagues. Today, I comforted a student mourning a friend lost to violence. Today, I advised a student facing a life-altering decision. Today, I split my lunch between two students because their mothers don’t have any money right now to add to their lunch accounts. Today, I locked my classroom door and cried over a student whom I simply can’t seem to reach. Today, I sent healthy snacks home with a student for him to share with his siblings for dinner. Today, I fretted over the consequences to my students of our probable school closure. Today, I worried about the outcomes my students will face now that the school system has decided to discontinue the intensive-level placements they need in order to be successful.

As I sit here, I wonder why an employer would sacrifice an employee’s meaningful work on the alter of assessments students don’t take seriously. I wonder why an employee would continue working a job in which they are so devalued. But what do I know? I’m just a teacher.

Let’s Get This Started!

Hello! I am all kinds of overwhelmed by my family, my job and my health. For far too long, my health has taken a back burner to everything else in my life. That needs to stop now. I could continue to come up with a million reasons to continue as I am…

I don’t have time to cook from scratch. Honestly, though, I love to cook. Other things are just always more important. But even though I can’t cook 12-course meals, I can make some better choices.

My kids need me too much. My youngest has autism, ADHD, sensory processing disorder, and specific learning disabilities. We spend our evenings at various therapy appointments (which is why I don’t have time to cook). My daughter is nearly 16 and, well, dramatic (and she has ADHD, too). But if I flip this one around, they need me so much that I need to take better care of myself, right? I need to make myself more of a priority.

I am too stressed at work. I am a teacher. I am on my feet in the classroom all day long, except during my planning period, which I spend in meetings. I usually don’t get to eat my lunch until 1:30…I gulp it down from 1:30 – 1:35 between classes. By then, though, it is usually too late to prevent a migraine, so my evenings are hellish. Which leads to…

I am too sick to get myself better. Even though I know a better lifestyle would give me a better quality of life, it is hard to care when I am in the throes of a pukey migraine or a fibromyalgia flare. This is the Catch-22 for me: I feel like crap, so I can’t do the things I need to do to stop feeling like crap. I need to do them, anyway.

My loose plan is to share my life, my journey here. I will try recipes and give some honest reviews. I will ask for kicks in the butt when necessary to keep me moving. Mostly, I hope that writing it all down will help me stay focused.

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