Why I Must Live Forever

This happens all the time. Every setting, different people, but mostly at school. And I don’t blame anybody; how could those not around him all the time know?? Zach arrives in his classroom only to engage in a ritual of repacking his lunch. He is scanning the room for signs of disorder. For trouble. He tries to zip the backpacks that are slightly or fully unzipped. The class is going to PE but he cannot tear away from the compulsions.

You encourage the termination of the obsession (Zach, the water bottle and baggies are just fine). He ignores. The staff tells him the kids are going to the track. He shakes his head no. He pulls zippers so hard they break. Everyone departs. His paraeducator stands behind him. Zach is anxious about the door opening & closing. No one notices that.

The teacher tells the aide to meet them at the track. She reminds the aide to take the route past the bathroom. Suddenly Zach becomes agitated. He shakes his head no. He pulls on the aide’s arm. “You don’t want to go to PE?” the teacher says. Zach nods no. They think he means he doesn’t want to go to PE but that’s not it.

He WANTS to go to PE; he likes PE. But they start talking about keeping him in the room because he is agitated. Because he shook his head no to the question. Then he attempts to shut the door. They take this as another sign he doesn’t want PE. The staff is contemplating what to do. Zach is trapped. Trapped in his rituals. Trapped by misunderstanding. Trapped as he knows no one gets him.

I can see the look in his eyes. There’s anxiety in his bones. I can feel the tension in his gut and the temperature of his brain rising. What could happen next – which no one wants to have happen, least of all Zach – is a fit of hysteria, complete with a level four tantrum where someone’s arm gets scratched and bloodied. Or worse. So here comes mom again.

As they discuss how to keep Zach occupied while everyone else goes to the track, I intervene as his distress spikes. “He WANTS to go to PE. He does not want to go to the bathroom. He thinks you meant take him to the bathroom when you said to take the route past the BATHROOM. He heard that as a directive.”  Everyone just pauses. Eyelids blink. Silence. Zach looks at me quickly and nods yes. “Do you want PE?” the teacher asks. He nods yes and turns to go. With one final check of the backpacks and a slam of the open door (to make sure it’s shut), he walks on.

To be misunderstand time after time, day after day. No wonder he acts out. To hear things people say in close proximity to him, and to take those words as prompts or demands, it must be so stress-inducing. I exist in a place where I am in the outside world and I am in the mind of my son. Simultaneously. My love for him puts me there, and I’m glad to be there as best I can be. But what a strange place that can be sometimes. Interpreter. Translator. Detective. Mouthpiece. Figure-outer-er. Am I right 24-7-365? Nope. But I hit the bullseye pretty darn close relatively fast. Meltdown averted. Maybe stress reduced. He gets to go to PE with the other kids. Not sequestered in a lonely classroom for an hour where his rage and hurt and frustration stew and leave him miserable.

This is why I cannot die. It is a fear most special needs parents have; no one will know their child the way they know their child. No one will have the level of internal knowledge we have or the decades of experience for this “job.” It’s quite a scary predicament to realize you are going to pass away someday and leave your dependent son or daughter to fend for themselves in a world that is not always kind or understanding or patient. There will be those in his life who think he obviously doesn’t “want PE” and will punish him for “acting out.” Sequester him. Leave him behind. They will see what they see and arrive at wrong conclusions, leaving him helpless to straighten it out. 

That is the only answer, isn’t it? To live forever?

2018-09-12T14:47:25+00:00

6 Comments

  1. Jan Janek September 12, 2018 at 4:07 pm - Reply

    As usual, you eloquently write about our common experiences. So true and so maddening.

  2. Janet Wuchner September 12, 2018 at 4:24 pm - Reply

    Keri that was a good article you wrote but sad too.

    Sad for Zach and for you and probably the aides get frustrated as they don’t know what he wants or needs.

    I wish I had a magic wand or something for him.

  3. Kim Smith September 12, 2018 at 4:29 pm - Reply

    Eeeearily so so true!! So well written!! It’s like I’m there with him!

  4. Michelle Burk September 12, 2018 at 6:59 pm - Reply

    I love reading your articles Keri. This one is frustrating. I want “everyone” to have to read it so “everyone” can have another perspective or just take an extra moment to contemplate decisions, judgement etc.

  5. Teresa September 15, 2018 at 8:36 am - Reply

    You painted such a clear picture, of Zach, the situation, of yourself. Love the writing and your honesty. Thank you for this.

  6. Charmayne Danton September 27, 2018 at 3:06 pm - Reply

    The not being able to live forever, or at least through his whole life has to be a huge concern. One I have often thought about for all of you in this kind of situation. 🙁

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