Power, Peers, and a Sad Evening: Part III

tuba practice

Last Tuesday, The Boy took me to lunch with a gift card Poppy had given him to do just that. I picked him up from Grammy’s, and we went to McDonald’s. Somewhere along the way, I asked him if he was still sad about the concert.

“Hm,” he said, indicating he didn’t have a ready answer.

“Or maybe you haven’t been thinking about it too much,” I suggested.

“Yeah, I haven’t been thinking about it much,” he parroted back. “I just wish it hadn’t have happened.”

“Me too,” I said. “Those kids made a poor choice, didn’t they?”

“Yes, they did.”

I told him a little bit of the conversation I had with the principal. He asked if the band director had done anything about it. I told him the kids had had to talk to the principal and Mr. Collins about their choices. “The principal didn’t think the kids did it to be mean, though. What do you think?”

“I don’t know,” he said.

“It’s hard to tell if someone is just being mean, huh?”

“Yeah.”

“They told the principal they did it because you were playing wrong notes.”

“I wasn’t playing wrong notes!” he said, alarmed.

“Even if you were, it still wasn’t their place. You don’t touch other people’s instruments.”

“No, you don’t touch other people’s instruments,” he agreed.

I asked him to tell me if anything like that happened again, and our conversation moved on to other things. He’s sad because he can’t get that performance back. I think he knows the kids treated him differently than they would have treated a neurotypical kid. I think he’s wondering why they did it. I needed him to know the jist of what had been said at the meeting and what the kids involved had said to the principal. He has a right to know. Along with the right to play.

 

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Under the Surface

Kiddos on the spectrum process emotion differently than us neurotypicals.

“Duh,” you might say. And I would agree, but sometimes I forget how deeply this runs through my own kiddo.

Last week, I got notification from Fantastic Babysitter that they were most likely going to have to put their kitty down.  She was getting old and not feeling well, and not getting any better, and she was worried about The Boy.  I was too, because sometimes the death of an animal seems to hit him harder than the death of a human being, which is typical for those on the spectrum (“kitty” was his first word, after all).

One of our old kitties who is in kitty heaven now

One of our old kitties who is in kitty heaven now

I approached the subject with him and let him know that the kitty in question would probably be going to kitty heaven soon.  He asked why, and I explained that as animals and humans get older, their bodies fail them, and they start to get sick.  Sometimes, when animals get so sick, we put them to sleep so they can go play and run and chase mice with their friends in kitty heaven.  We talked about how it would be cool for Fantastic Babysitter’s kitty to go play with our old kitties in heaven, and that she would be happy there.  He had some questions, and I answered them to the best of my ability.  He seemed a bit bothered, but also seemed to handle it with grace.

I reassured Fantastic Babysitter that The Boy was ok, and we were sad for her. It’s never easy to let a pet go, but we had been through it a couple of times, so it shouldn’t be too Earth-shattering for The Boy.

And everything seemed ok.

But then, some other things went wrong in The Boy’s world last week, and the death of the kitty seemed to come back up to the surface and tip the scales, sending him off the edge.  You see, taken by itself, the absence of his friend-who-is-a-girl on Friday would have been upsetting, but not on-the-verge-of-a-meltdown all weekend.  But add the death of the kitty (which obviously affected him more than I could tell on the surface), and it gets to be too much to process.

Everyone is leaving him, he thought.

And for a kid that actually has been left behind by a parent, any dumba** could see the potential for meltdown.

I’m glad I have enough perspective to be able to understand in hindsight what contributes to his frame of mind. Maybe someday I’ll be able to predict a bit better to help him head off some of these catastrophic feelings.

Always a process, always learning.

Stop & Listen

A common theme here on Simple. I Just Do. is that I forget, sometimes.  Your kid gets to be 13 and you feel like you know everything until you don’t.  His behavior is wonky, he’s depressed and ready to blow for a week, and you scratch your head and say, “I hope he gets over this thing soon, because I have no idea what’s going on with him!”

And sometimes you lose it.  You lose your patience because you are just so tired of hearing the negative, and the same thing every day, the fixations on things that never happened, and the punishments he has dreamed up for himself for poor choices he didn’t make.  And you snap, because you just don’t have any more answers, you just can’t understand, and you just can’t listen to one more minute of the perseverations.

And you start talking to him like you would talk to a neurotypical kid who is lying, or has made a poor choice, or is misbehaving, all the while knowing that he is not that kid, and this is not any of those situations.  But you do it anyway because you’ve got nothing else.

“No, that’s not true.  No, that didn’t happen.  I need to understand the real reason why you are upset.”

And you may even raise your voice a little, because he just doesn’t understand you.  And you just don’t understand him. And there is complete communication breakdown. And he begins to get teary eyed.

And then he tells you something new.

He tells you he is upset because his plug and plays are not working right, and you remember that you were going to get the crud out of the battery compartment of that one plug and play, like, two weeks ago and you never did.

plug and playAnd so you hug him, and tell him to find his little screw driver so you can take the covers off of all of them.  When he brings you the screwdriver, you tell him to get the pack of batteries you bought him last weekend, and you sit down together.  And you start working on solving this problem.  This problem that he told you about two weeks ago.  This problem that you said you would help him with and you didn’t.

This problem that a neurotypical kid would have nagged you about, but that your actual autistic kid did not nag you about.

This problem that seemed small to you, but was probably huge to this boy who couldn’t communicate its importance to you.

You kick yourself because you knew and didn’t know at the same time.  You forgot that the importance of things is relative.  And he told you, but you weren’t listening.

 

Luckily, all he cares about is that what’s been bugging him is being fixed. He is no longer negative and depressed, but excited and chatty.  Communication breakthrough. Peace restored.  And he doesn’t hold it against you like a neurotypical kid might.  And that makes all the difference in the world.

 

Peer to Peer: How to Make Sure Pranks on Kids with Autism Don’t Happen

There are too many stories of horrific acts done to kids on the spectrum these days.  The ice bucket challenge “prank” in Ohio, the boy in Pittsburgh duct-taped to a soccer goal… Targeted hate crimes if you ask me.  I’m appalled that schools and law enforcement seem to be utterly reactive in these situations, as well.  Taking plenty of time to “investigate” while handing down weak “discipline”.  It is so utterly disheartening to read about these attacks.

What I know is that the chances of that type of thing happening in the district where The Boy went to school from kindergarten through 5th grade were  and are slim to none.  Why?  Because they were proactive.  When they created an autism program, they also created a program for the neurotypical students that would be encountering this population in their classrooms.

In The Boy’s case, it started as “Grub Club” where the kids in the ASD program were able to go out into the community for lunch once a month and invite an NT student/friend.  The kids in the spectrum get real practice using social skills, and the NT kids get to know the ASD kids as real people, away from the peer pressure.

Grub Club morphed into the LINKS program (more info here), and by the time The Boy was in 5th grade, almost the entire 5th grade class had signed up to be a LINK.  They received special “training” and volunteered to buddy up with their ASD friends in class on projects.  When I watched The Boy and his classmates, they never hesitated to help him find where to go at the choir concert, and never refused a birthday party invitation.

friends

You can’t expect neurotypical kids to know how to deal with kids on the spectrum.  You can hope their families have given them some good training on how to treat other human beings, but sadly, this is not even the case the majority of the time.  If you are going to teach my kid with autism how to react to the neurotypical world, you had better also be teaching those NT kids how to deal with my kid with autism.  When you don’t, you are missing teaching lessons as important as anything in the Common Core.  And maybe your district will be the next one on the national news, dealing with some horrific act perpetrated by your students who were never taught these important life lessons.

The Problem with a Spectrum Disorder

Spectrum4websiteEval“The difference between ‘high functioning’ and ‘low functioning’:high functioning may mean your child’s deficits are ignored and low functioning may mean that your child’s assets may be ignored.  It is our job to educate and make the community aware of our child’s strengths.  Inspire others to do the same.”

Picked this up on facebook (someone point out the original attribute if you know).  These “functioning” classifications have always irked me a bit, but in spite of that, part of me says, “Hell, yes!  This is the truth!”  And I suppose it is for many on the spectrum who are clearly “high functioning” and many who are clearly “low functioning.”  It’s a paradox for kids (and adults) who “pass” for neurotypical – People see no tangible issues and have expectations that can be unreasonably high, as well as for kids (and adults) who clearly have issues, and as a result people have expectations that are unreasonably low.

The other part of me says, “And the kids who are in between are the most misunderstood,” because that is The Boy, and he is misunderstood.  He’s bright and clever, and with proper supports, is very capable of A level work in school.  But he needs the supports, and is a good bit away from “passing” for neurotypical.  People see his issues, and have no idea what to expect.

Here’re my two cents: While it is important to enlighten the community about typical behaviors, commonly used strategies, and the like, we must also hammer home that every child has different strengths and “areas of opportunity” – nothing is as it seems.  No child on the spectrum is what you expect, and only by getting to know each individual will you begin to understand them, their struggles, their triumphs, and their potential.

Book Club Discussion: The Reason I Jump, “Earthling and Autisman”

reasonI’m continuing the discussion here today because The Reason I Jump is an important book.  Naoki Hagashida, at age 13, answered questions about autism from his viewpoint, and while his experiences are not the same as probably anyone else’s on the spectrum, his thoughts provide insight, and provoke thought, neither of which can be bad for those of us who desperately want a glimpse into the minds of our children.

Question 22 asks, “Do you hate it when we make you do things?” Naoki explains that kids with autism often don’t know how to do things the same way as neurotypical people, no matter how many times they are shown how.  He explains that they understand that we don’t know if they are even listening or understanding, but that they still want to do their best, and they know when someone has given up on them.  “When we sense you’ve given up on us, it makes us feel miserable.  So please keep helping us, through to the end.”

Question 23 asks, “What’s the worst thing about having autism?”  Naoki says we can’t imagine how miserable kids with autism are.  An inability to communicate makes it that much harder.  He says, “We can put up with our own hardships okay, but the thought that our lives are the source of other people’s unhappiness, that’s plain unbearable.”  I have found that people assume those with autism to lack empathy, but my theory is that people with autism actually have an overabundance of empathy, and that many of their behaviors are an attempt at trying not to feel so much.  When I have been able to point out The Boy’s effect on those who love him, he is usually much more able to control his behaviors.

Question 24 asks, “Would you like to be ‘normal’?” I know what I was hoping to hear.  Naoki says that when he was younger, he would have jumped at the chance to be normal, but not anymore.  He says that by striving to do your best, and that is how you achieve happiness.  He says, “For us, you see, having autism is normal – so we can’t know for sure what your ‘normal’ is even like.  But so long as we can learn to love ourselves, I’m not sure how much it matters whether we’re normal or autistic.”  Are you crying yet?  Such wise words from a young man.

I hope that you’ve gotten your hands on a copy of this book.  Even if it isn’t the experience of every single person with autism, it is the experience of one, and that’s worthwhile.