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Taking control of chaos

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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.

On raising a not-obviously-black son

little boy
light boy
broken

Can I still play with my [darker] brother?
Mommy?
I don’t want to die.

**************

Yesterday, while we were at a doctor’s office, my son caught the news of the Baton Rouge and Minneapolis shootings on a wall-mounted television. His eyes filled with tears and he said, “Thank God I’m light.” His comment demonstrated for me his disconnect from a vital part of his heritage. Although my boy is half black, his looks make his race hard to pin down. His hair is straight, his skin light enough to be tan, and he looks like his Native/White mother. I was a single mother for many years, and my son has special needs. Teaching him to accept his own uniquely American blend simply wasn’t on my radar because teaching him to talk to people/write/play with others/do his therapies made a larger impact on his daily life. We are now part of a beautifully-blended family and he is surrounded by darker-skinned siblings. Yet I have somehow missed an extremely important part of his education.

I don’t care what color people are, and I have been careful to expose my son to friends and experiences from a variety of races, religions, and cultures. I grew up straddling two worlds and never quite belonging to either, and I didn’t want that isolation for him. I have carefully raised him to be kind to everyone and to take a stand for right when necessary. He recognizes racism and homophobia, and he speaks against their unfairness. In my world of [non-black] privilege, I thought that was enough. It wasn’t. It isn’t. Because here was my boy, my amazing, kind, funny, smart, adorable boy, instinctively placing himself in a less-assaulted color category.

“Thank God I’m light.” Thank God the police won’t shoot me on sight because I don’t look as dangerous as other black people. Thank God I don’t look stereotypically black. Thank God I can pass.

This experience has highlighted even more for me that America’s cultural attack on black people cuts so much deeper than the physical murders making the news on a daily basis. Black people are also being attacked from within, faced with fissures between skin tones. This has been happening to some extent for hundreds of years, but now is the time to end it. We have to end it. The systemic, deadly racism America now faces is urging us to separate at a time when we most need to work together for change.

Now, after Dallas, we must fight even harder not to be separated. In the face of extremist officers or snipers, we are all at higher risk in our interactions with one another. I don’t want to live in a world in which my black son weighs the safety of playing outside with a darker friend. I don’t want to live in a world in which he is thankful he doesn’t look like half of himself. We have to end it.

Stepmommying

Being a step-parent is the second hardest job I have faced after autism mommy.

You walk into the lives of these kids, still feeling pain from their parents’ split, wondering on whom they can rely after their worlds were torn apart once before. Your very presence demands that they trust you will be there for them.They may fall right into a comfortable rhythm with you, or they may resist all efforts for as long as they possibly can. Eventually, if you hold on long enough, they realize that you are with them for the long haul, and you become more than friends, less than parent/children.

Their mother has done an amazing job raising them. These kids are smart, polite, caring, and confident. You do your best to stand in for her in her absence, and you try to make your own place in their lives in her presence. While she must be reeling at the changes to the family dynamic (namely, YOU), she is accepting of your love for her children, and she is careful to include you in important events. Together you carve out a weird you-shaped, kind-of-family-maybe spot.

In the blink of an eye, the kids become teenagers. You see them less often as their friends become more important, you struggle to keep up with their latest interests, and you watch huge amounts of food disappear from your fridge and pantry in a weekend. You are both less and more certain of your place in their lives. They are reaching more milestones, and you hold back slightly because these moments rightfully belong to their mother. However, they begin to notice that you may be almost as smart as they are, and as you are better able to offer advice, you try to hold on more tightly because you know the day is coming.

And the day does come. You look at these kids, these former little, little kids that once enthralled you with their barely-shaped personalities, and you realize it has happened. They are no longer teenagers. They are adults. They are a Mom with a baby of her own, handling motherhood seemingly as though it were nothing more than a new laundry routine. They are an Air Force Airman, fearlessly going off into the wild blue yonder to follow her dreams. There are two more of these kids following close behind, trailed by your own biological baby. It is too soon.

You cry more than a little. Time has moved so quickly, and you didn’t get to share those early years.  Stepmommying is equal parts rollercoaster, grueling decathlon, and lottery winning. In the end you feel a tremendous sense of pride because, no matter how small the part you played, you helped create these amazing gifts for the world.

 

Why do I share our story?

Lately, I have come across a huge number of autism parents who believe that autism is about their children, not them, that it is their children’s story, not theirs, and that they therefore would be wrong to share any information about their children’s disability, their own coping strategies, or how autism affects their family.

I disagree, and I honestly believe that this movement is moving us backward in our journey towards acceptance. Once upon a time (not very long ago), children with autism were locked away. They were not challenged or enabled to become productive members of society. They were considered less than human, problems to be dealt with silently, a family secret. Parents didn’t speak of these children, is my main point here. Instead they remained quietly ashamed.

This new movement has the same end result. Children are locked away without awareness of the commonality of their disabilities. They are kept from accessing supports that would be available if their parents were willing to share their stories with those who could help.

So why do I share our story? Our struggles? Our triumphs? Because I am not ashamed of my son. I am proud of every gain he makes. I don’t think there is anything wrong with stating his disability or the ways it has affected our family. Numerous parents at the beginning of their own autism journeys have approached me, and I pray that our story has helped them.

Likewise, sometimes you must share information at work. I had intermittent FMLA leave last year due to my son’s challenges. I had to share some information in order to get approval and even to ease some of the tension with other teachers who had to cover for me when I dealt with emergencies. Once my coworkers understood why I was missing work, the environment became much less strained and stressful.

Finally, I know my son has been helped tremendously by learning that he is not alone, that there are others in our community who share his challenges and disability. If nobody ever shared their stories, so many people would remain isolated and lost.

Remaining silent (and seemingly ashamed) does nothing to promote awareness or community. And community is what pulls you through your darkest days. That is why I share our story.

 

Mother’s Day: Love and Loss

On this Mother’s Day, Rivi would have been 11 1/2. His little brother just turned 10. With every milestone his younger brother achieves, a piece of my heart aches…the Rivi-shaped piece.

That little heart spot hurts at other times, too, Mid-September through October, Rivi’s original due date, the beginning of every school year, but especially today, Mother’s Day.

My first Mother’s Day without Rivi passed silently. There were no flowers, no cards, no dinners out or gifts. Instead, there was me, quietly and desperately pretending it was just another day. I didn’t know how else to commemorate the tiny boy I’d lost, so I went and got a tattoo of Rivi’s name on my ankle, my first Mother’s Day gift.

By my second Mother’s Day, I had a living boy in my arms, but I still barricaded myself in my apartment, only taking a call from my mother. In advance, I refused all celebration. I held the boy I could and mourned the one I couldn’t.

This is my 12th Mother’s Day, and it is still an emotionally raw, bipolar day. I suspect it always will be to some extent. I thank God that I have an amazing boy here to ease my pain, but other mothers of lost babies aren’t so blessed.

To all of those mothers of invisible children, I say that I still feel your pain. 12 years later, I can only tell you to be gentle with yourselves and to celebrate your motherhood, no matter how fleeting the physical portion of it was. Remember your babies and do whatever you must to survive the day…and that pain? That pain is Motherhood.

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.

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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