“He Needs to Learn the Boundaries”

The Wednesday before Thanksgiving is traditionally a half day. If you’ve had a school-aged child in the past fifteen years, you also know that many, many families forgo these wasted school days to add an extra day of vacation. What happens to our family is panic.

When other children miss school, The Boy can become inconsolable. And so it came to pass last Wednesday. He paced furiously, escaping the school at one point, sweeping things from surfaces in the office to the floor, “bumping” a counselor who he felt was in the way. He was allowed to call me, but my voice was not enough this time. He said he needed me to come pick him up. I told him it was a short day and to try to stick it out.

A wary-sounding counselor got back on the phone. I told her I had asked him to try to stick it out, and told her she could call me back if she needed to. Not ten minutes had gone by when she called and told me that there were “parents in the office who needed to get some things done” so I would need to come pick him up.

Wha…?

Ok. So I go to pick him up, and the principal asks me to “come on back” to her office. I was fairly unwilling. I do not need to be summoned into your office as if I’m some misbehaving child. I told her I didn’t have a lot of time, and followed her in. She said The Boy was upset because one of his friends was absent, and that he had even given his TA the finger. I almost laughed. I wanted to say, “So he’s communicating his anger in a pretty normal way? Awesome!” but I refrained. I just stopped talking, waiting for The Boy to be located and/or corralled back to the office. No one seemed to know what was really going on.

The Boy came back into the office, with his TA, and the principal immediately began speaking to him in that tone, telling him they would be discussing his behavior on Monday, and that he needed to apologize to his TA right now for giving her the finger. As is his wont, he immediately tried to tell me that he had “done something” to The Man this morning and needed to apologize for that, too. This was untrue, but this is what he does. When he perceives he is in trouble, he adds on imaginary infractions. I ensured he gave the TA a proper apology (or as close as we could get mid-meltdown), and then he announced he was going to stick it out for the rest of the day. Off they went.

The counselor and the principal informed me that we needed to meet regarding his behavior. (No, I’m thinking, we need to meet regarding your behavior.) I said we needed to be clear that this was autism, and this was going to happen from time to time. “He needs to learn the boundaries, here, that he can’t just leave the school!” the counselor said. I replied that The Boy is your best rule follower, but when one is in a meltdown, logic goes out the window. He is fully aware of the boundaries, but this would happen again. I said we need to be clear that this is not bad behavior. The principal assured me that she did. I said we needed to be clear that The Boy has a right to a public education. The principal assured me that they knew he did. I said we need the autism specialist at the meeting we were to have, and referred to her by first name. The principal had no idea who I was talking about, until I prompted her. She said she could make sure she was there. She said they need to tweak their strategies, as The Boy is getting older. I said ok, but this would happen again.

I was pretty riled. Their attitude, the tone they took with The Boy, the astonishment that he had “bumped” the counselor (yes, this happens all the time in special ed classrooms – is he the only child they have in the school with autism??)…

Strategies do need to be put in place because absolutely nothing has been done since the last time I was summoned to the principal’s office (do you think maybe a behavioral analysis might be a good idea??). After three years here, I am actually still shocked at the lack of autism awareness among the educators. I guess I need to pull out my lesson plans for Autism 101. “Class? Let’s begin. Rule number one: Behavior is Communication…”

Update: We had our meeting, and luckily the autism specialist was right on target (I basically ignored the principal and counselor, who weren’t contributing much anyway). We drafted a “crisis” plan, as well as a social story, and will meet again to formalize the plan and add it to the IEP. Unfortunately for the them, between absences surrounding the Thanksgiving weekend, and some suspicious activity at a couple of county schools (which turned out to be military personnel conducting a survey) and everyone keeping their kid home today, thinking this was somehow connected to the terror in San Bernadino yesterday… I’m anticipating the second morning phone call this week…

The Boy’s having a rough go right now, and I just hope they can pull this together.

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No News Isn’t Necessarily Good News

Communication from the school regarding The Boy has dwindled down to virtually nothing.  And I learned the hard way when The Boy was first in preschool that assuming that no news is good news is never a good idea.

He started preschool at his home school in January after being kicked out of his speech-based preschool run by the hospital. In March, his dad and I went to teacher conferences and asked about kindergarten. The teacher laughed and said, “Oh he won’t be ready for kindergarten next year! We’re going to recommend he do another year of preschool.” She waited 3 months to tell us she didn’t think he’d be ready. We went home and started looking for a house in a district with better schools and a better reputation for kids with autism.

Question Mark Graffiti by Bilal KamoonAnd now, everyone from his school has gone dark… Maybe I’m gaining a reputation for being “that mom” and they don’t want to poke the bear. I don’t know. I do know that the district is depending on a TA with three other children on her load to act as my son’s primary special education teacher. The teacher who teaches his special education math and language arts classes was out for a week last week, but tends to freak out about things that aren’t very freak-out worthy. I’m supposed to get an IEP progress report with his report card, and haven’t yet received one although I’ve had the report card for over a week.  His classroom teachers don’t often communicate directly with home, and expect parents to “look online” for assignments, tests, grades, everything. That makes their job easier, and mine infinitely harder (which assignments have been modified, are the due dates and number of questions the same for my kid, or not?). Two of his teachers have started a texting thing, where they will send out mass texts about upcoming quizzes and tests – great! Except the last text I got was on a Sunday, saying there was a test the next day… I was signing his agenda every night, and that is also supposed to be where assignments are written, but it’s pretty blank now, so I haven’t been checking or signing it.

They’ve taken him out of a social skills class (that’s in his IEP), and put him with his TA for an hour at the end of the day. They still call it “Social Skills” but the teacher is listed as his TA (is that even legal? I asked the principal in my last email and she didn’t respond to that question), and from what I can tell there are no other kids in it. They work on getting homework done. I don’t know if the class he left remains, or if they reassigned that teacher. She also used to teach him math, but they took him out of her class for that, as well (and she was a good one).

I’d love to sit down with The Boy’s TA over coffee and just have a heart to heart with her. Let her know that I believe she is the only thing keeping my kid afloat over there. Let her know that it’s not fair for the district to use her like they are. And let her know that she doesn’t have to try to solve everything herself. I think she’s trying to keep me from worrying.

But the lack of communication is making me nervous. Time to investigate, I guess.

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.

 

Some Rough Days

The Boy has been having some rough days at school this week.  Lots of talk about people being absent from school, and students who have “left” school and may never come back.  None of it is true, but he has emotional reactions to these “events” and we are left to try to figure out what is at the heart of it. Add that to lots of perseveration on his favorite topics, and anyone can see he’s anxious about something.

His teacher emailed me the other day commenting that he seems to let one small correction bother him, and then add real infractions to ensure he gets “punished” or sent home, or some judgement that seems worthy in his mind.  I let her know that this is a common occurrence at home, as well.  Yesterday, I could tell she was frustrated because her email started with “Another bad morning today…” at 10:07am. Rather than respond, I let it ride. She’s young, and doesn’t seem to have the patience the job requires all the time.  Maybe she just needed to vent. I wanted to remind her of Rule Number 1: Behavior = Communication, but I didn’t.  People don’t like it when you tell them how to do their jobs.

crabby

And sometimes he’s just crabby… Kiddos on the spectrum are allowed to have emotions, too.

I’m not sure what’s going on with The Boy, but he seemed much happier yesterday afternoon than he has been in about a week.  I hope that whatever has triggered this latest round of rough days has resolved itself, but only time will tell.  The Boy and I did talk yesterday evening, and I got the sense that we had turned a corner.

Sometimes we figure it out, and sometimes we let it ride and walk on eggshells for a bit. As our very favorite teacher always used to say, “Tomorrow’s another day.”

Behavior Analysis for Dummies

I opened yesterday’s post with a series of oft-asked questions of parents of kiddos on the spectrum, the biggest of which I suspect is “Why in the hell is he doing that?”

There’s a lot of guilt one feels as a parent to a kiddo on the spectrum.  After the meltdown, or public incident, or whatever the negative behavior that just occurred was, we often think, “Was that my fault?  Did I do something wrong that caused that?” While feelings of guilt are rarely productive (although feelings are feelings and we can’t control them, really), this questions is a good starting point for a little behavior analysis.

You see, most autism parents already do this naturally, but may not know it had a name.

observation.jpgWhen your kiddo starts to have a problem at school, the IEP team may suggest a functional behavior assessment.  This is where someone (probably with a lot of credentials) will come in to observe your child over several days, and collect data about his/her schedule and routines, and more specifically, exactly what happens before the negative behavior occurs.  The reason they do this is to figure out the “trigger” for the negative behavior, so that we can better understand what the child is attempting to communicate through the negative behavior, and then plan strategies to avoid or minimize the trigger so that the negative behavior decreases, or plan strategies for how the kiddo can cope with a trigger that cannot be reduced or avoided.

Let’s say I get a phone call that The Boy is repeatedly attempting to escape from science class (yep, this happened in real life).  A functional behavior assessment would serve to identify if this is occurring at a consistent time, and what the cause might be – is it another child with lots of body spray sitting next to him? Is it the brightness or noise of the projector that is turned on next to his seat at the beginning of class each day?  Does he have to pee?  Does he have anxiety about being late to his next class?  Does he feel like he is missing something important elsewhere in the building? Is he frustrated because he doesn’t understand the material? Is there too much handwriting so he is falling behind?  Through observation, they can determine what the constant variable is whenever he escapes, and then come up with a plan (move the projector, move his seat, allow him to use a study buddy or word processor to take notes, have a talk with the teacher of his next class about being welcoming and not marking him late, or allow him to use the restroom when he needs to, rather than at passing time).  Strategies often include the use of motivators and rewards, as well, to give your kiddo positive reinforcement to keep up the good work. For instance, if The Boy uses the strategy put in place, and stopped escaping from science, he could earn some extra iPad time in social skills class.

You see, we autism parents often do the same thing at home.  It’s how I know to expect some hyperactivity after we have Goldfish, especially the multicolored kind – I discovered that through careful observation of my own. The triggers for negative behavior I mentioned yesterday came from careful observation of my own, as well.

So if you are ever ready to throw your hands up and scream “WHY??”, take a deep breath, grab a notebook, and start observing.  You already do this fancy thing called Behavior Analysis, and no one knows your kid better than you. You are no “dummy”.  It may take days, weeks, or months, but you’ll get to the bottom of it. You got this. 😉

The Formula

More and more, this school year, I am wondering what the heck The Boy is communicating through all of this behavior.  My sweet little boy is refusing to do work, refusing to go to class, refusing to go to school… like someone has flipped a switch. When we experience a negative behavior (i.e. when all hell breaks loose), after the initial shock (Who is that demon child and where did he put my son?), I am left to figure. Autism parents are familiar with this. Determine the trigger and try to eliminate or decrease it so you can better manage the fallout, and predict when it might happen again. Except when you cannot for the life of you figure out the trigger.  Could it be puberty? That magical ingredient that changes body chemistry and is our current prime suspect? Is it medication that needs tweaking? Is it a virus, which always makes The Boy’s behavior completely wonky? Is it someone at school making fun of him? Is it a teacher? Is it..? Is it..? We are trying to take this thing and try to determine its formula, its ingredients. And it’s a difficult, difficult thing.

Who are you and what have you done with The Boy??

Who are you and what have you done with The Boy??

Shared here at Mama Moments Mondays – check it out!

Helpless and Dumb

Whenever I was sick as a child, my mom would say, “I hate it when you’re sick,” and I never truly understood the depth of that until I had my own child.  Today, I looked at The Boy and said, “I hate it when you’re upset,” and burst into tears.  “Why are you crying, Mom?” he asked.

I cry because I’m helpless and I know nothing.  I had to come and pick you up at school today because you wouldn’t go to class, and then tried to escape school.  I don’t know why.  No one does, and when we ask you, you start talking about your bus driver from last year, and how he must have retired because he doesn’t come to pick you up anymore. You talk about not going back to school until next week, or returning to that other middle school you went to for a quarter last year until I screamed enough to get you into a better one, the one you go to now.

I cry because I don’t understand your motivations, and I just want to make it better and easier for you.  Can we clarify the bus rules for you?  Let’s make a checklist so you don’t forget your band binder again. How can I make it better?  And I get no answer.

I cry because you are my only son, and I can’t see past this very day for you.  I hope I can get you on the bus tomorrow, but I don’t know if you will go.  I don’t know what will happen then.  I don’t even know if I will be able to return to work later today, if you will be able to calm down, if we will be able to come up with a reasonable plan to get you back to school and going to class.

I cry because there are no answers.  All of us autism parents just throw stuff onto the wall to see if it sticks every damn day.  Some of it sticks, and a whole hell of a lot of it doesn’t and you go back to the drawing board.  If I had a dollar for every time I said or thought “I don’t know what to do…”

All I can do is rely on experience, try, try, try, and hope, hope, hope.  But in the meantime, I hate it when he’s upset. 😦

A First: Saying No to an Obsession

Obsessions are a part of autism.  And most of the time they are at least benign (like Sonic the Hedgehog), if not something we parents wish to encourage towards a future career (like computers).  Usually, we tolerate the obsession until we ourselves become experts, learning about every type of car dome headlight that is made on the planet.  Sometimes we have to limit the time we talk about cats for our very sanity.

But I have never before had to say no to an obsession.

363px-Decorative_toilet_seatSeveral years ago, The Boy had an obsession with toilets.  He went through a period where he learned just about every brand of toilet, and would watch YouTube videos of toilets flushing all day if we let him (and yes, there are lots and lots of YouTube videos about toilets, if you didn’t know).  And after awhile, as most obsessions do, it petered out, replaced by something else.

And after his visit to his dad’s this spring, The Boy’s obsession with toilets resurfaced, as obsessions sometimes do (especially after infrequent visits with his dad).  But this time, he graduated to an obsessive (almost compulsive) desire to experience real live toilets.  He would spend hours in the toilet aisle at Lowe’s (if we let him), and at the Habitat for Humanity ReStore.  He began to take his iPad into the bathrooms at home and at Grammy’s to videotape them flushing.  And then he began to take his iPad into public restrooms, when empty, to videotape them, as well.

He seemed to understand that it was not OK to make videos when other people were in the restroom, but that necessitated our waiting until the coast was clear, which was not always easy.  And then the obsession intensified so that he would need to see and/or video every toilet at every stop we made in a day (and if you’ve read the blog at all, you may remember that The Man stops in quite a few convenience stores in a day to refill his diet coke or to pee, the only vice he has).

And then a few weekends ago, we spent $50 to take a ferry ride to a nearby National Park site (The Boy’s idea so he could “visit” the toilets there), which resulted in a meltdown and another ferry ride back within the hour.  I didn’t even get to the beach.

I began to plan a reduced amount of time where he would be allowed to do this, which I knew would be painful.

And then we had another incident this past weekend. And we had to just say no more.  No more videotaping of toilets in public restrooms.  We were in the car a couple of hours from home, so he couldn’t run away, and couldn’t really rage too much.  He is a better listener and communicator in the car. He wasn’t happy, and I wasn’t comfortable with the complete elimination, knowing it would be a very difficult transition for him.  But he seemed to accept it by the time we arrived home.  “I can take pictures with my invisible camera and save them to the cloud,” he said.  “Or you could take them with the camera in your mind and just remember them,” I offered.  He seemed to like that.

The Man and I were cautiously hopeful.

The next day, the Boy expected to be able to go videotape some bathroom again, and again I told him we weren’t going to do that anymore.  He still didn’t like it.

“I guess I’m not interested in that anymore,” he said angrily.  And my heart broke a little.

I know his interests are a part of him, and by saying “no more” it is hurting him.  But he is a big kid now, taller than me, and people out there are not as patient with tweens as they are with the cute little ones.  I just don’t trust that someone won’t call the cops on him for being creepy.  We have explained that to The Boy in the simplest terms, and I hope he is starting to understand, but there’s really no way to know.

So far, it hasn’t been a daily battle, but I think it will be tougher on the weekends, when we are out and about.  I know we need to try to “replace” this obsession with a new one, too, but that is much easier said than done.  So this will be a struggle for us, and we’ll just have to see how it plays out.  It’s a first for all of us, and no fun for any of us.

Behavior Really Is Communication

Behavior is Communication.  This was one of the tenets of autism I learned early on.  I remember sitting in a workshop with my then-husband, who really just didn’t get it, and this was the key piece I walked away with – I already knew it, but the workshop had reinforced it, and I had hoped my then-husband would have an a-ha! moment, but it never came.

The ex has now cancelled on The Boy for his week of visitation next month, and I broke it to The Boy late last week.  He had equated this planned trip to his dad’s to the escape plan of the tank fish in Finding Nemo, and would talk about how he was looking forward to seeing whether or not the escape plan would work.

Well it didn’t.

And at first, The Boy seemed OK.  “I guess the escape plan didn’t work.  I guess we’re stuck in the tank,” he would say.  I knew he didn’t really feel like he was stuck here with us, but that the plan fell through.

As the weekend wore on, and we began to witness more teenager-y behavior (refusal to do things we asked, etc.), it took my mom pointing out to me that this behavior was probably coming from the cancellation of plans.  And I had a Doh! moment.  I should know better, because of that basic rule, BEHAVIOR = COMMUNICATION.

Of course, that explains why he was being such a jerkface this weekend!

It’s still a sore subject, but figuring it out has helped The Man and me gain a little perspective, and retain a little more compassion for him right now.  Sometimes it’s hard to be compassionate to someone who is being a jerkface, but The Boy is still just a kid, and a kid who has been cancelled on again by his dad.

“I knew this escape plan wasn’t going to work.  Do you remember me telling you that before?”

😦

 

 

Once You Get to Know Him

IMG_1303Throughout his life, The Boy has attracted a great number of fans.  He has lots of people who love him deeply, including Fantastic Babysitter, his former ASD teacher(s), and lots of caregivers and therapists who have made up his support team.  Of course, The Man, The Boy’s grandparents and I adore him, too.  He makes us laugh, and surprises us everyday with his intelligence, sense of humor, and amazing abilities.  And when mentioned by name to teachers and administrators in schools of many hundreds, only his first name is necessary.  Everyone knows The Boy.

But usually, it doesn’t start out that way.

Usually, it takes a while for people to get to know The Boy, as I’m sure is the case with most kids and people on the spectrum.  The very challenges that define the disorder make it difficult for neuro-typical people to get to know him.  They tend to gloss over his human-ness and focus on what he can’t or won’t do for them.  And as they get increasingly frustrated with him, he picks up on it and begins to distrust that person, which increases the likelihood that he will not or won’t be able to do what they need or want him to do.

This is the downward slope upon which we were sliding with his band director.  But as sometimes happens, a realization was made that this kid (The Boy) is freaking awesome, and a second realization comes close behind – “If I was wrong about that, what else was I wrong about?”  As soon as a doubter sees the error of his or her ways, they not only like him, but they become a fan, and a crusader to get him whatever he needs to succeed.

Now that the band director has seen and heard what The Boy can do (including make the entire class – including the band director himself! – laugh with a joke), he has been extremely helpful and communicative.  He emailed after a recent playing test, saying how “proud” he was, probably because, as his program teacher said in her email that day, “his was the best tuba test of the day!”

I will take what I can get – no lie, this is a huge victory for The Boy.  And I absolutely love how loved my boy is.  But it sure would be nice for people to treat him well, and give him the benefit of the doubt before getting to know how awesome he is.  He shouldn’t have to prove it before people will accommodate him.