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Taking control of chaos

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Special Needs

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.

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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.

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.

 

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.

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