Rock Bottom

Posted by on Sep 5, 2016 in Anxiety, Autism, Autism in Children, Executive Functioning, Hearing, Mental Illness, Sensory | 1 comment

Image of a stone found on a beach that looks like a human bottom.

Image of a stone found on a beach that looks like a human bottom.

I know the phrase “rock bottom” is generally reserved for the fall-out in addiction when you’ve lost everything and are finally ready to start making the climb out of the hole you’ve dug. This is not that kind of rock bottom. The kind I’m talking about is when a kid has such a bad experience with school that he doesn’t want to ever step into that school again. That’s probably not an official thing, but it should be.

Third grade was rock bottom for Zoo Keeper. I’ve blogged about some of the things as they happened, but I never really got around to the resolution and the backlash. I tried for months to write a summary of the year, but couldn’t bring myself to do it. I didn’t really understand why I was procrastinating until I started filling out forms for the new OT office Zoo Keeper is attending (because his favorite OT moved to a different practice). The history form was seven pages long. I would fill out one or two pages per day and be exhausted by the end of it. It feels silly to write that, but it’s true. Because each of the pages has questions about issues with your child’s development or goals that you have for your child in OT. And each of those questions requires you to dig deep into emotional territory; think about ways your family is different from typical families and from how you imagined it would be; think about issues you know you should be addressing, but you’re not. It’s emotionally draining.

Maybe that’s just me.

I had to complete forms for that OT and for our other OT that merged with some other therapists to form a new clinic and for the place the boys will be taking special needs swimming lessons this year. All of the forms x2 because Zoo Keeper and BamBam are individuals with distinct histories and goals. Before those, I completed forms for Zoo Keeper’s advocate and the school district’s autism specialist.

Eventually, I start thinking that everyone should already know all of this and wonder why I have to keep repeating myself. I know why, but that doesn’t make it any less frustrating.

All that to explain why I never wrote a summary of the horrible year for the blog.

But Zoo Keeper had a well-check appointment with his doctor in August and I didn’t want to have to explain why he had lost weight instead of gained this year in front of Zoo Keeper. Not that Zoo Keeper didn’t know everything I was going to say, I just didn’t want him to have to sit through all that. So, I wrote a letter to the doctor explaining the events of the year and what we’re doing about them and delivered it a week or so before the appointment so he’d have time to read it before we came in.

Image of a red quill upon a handwritten will on old parchment.

Image of a red quill upon a handwritten will on old parchment.

The letter was four pages long. I asked Sparky if it was too detailed and he said, “For any other doctor? Yes. But not for Dr. G.” Our doctor is fabulously thorough and well-informed, which is part of the reason we adore him. Sparky was right, too. Dr. G asked to speak to me alone for a minute and thanked me for the info and for getting it to him in advance. He also thanked me for being so detailed because I answered all the questions he would have asked, meaning he didn’t need to have Zoo Keeper talk about any of it unless he wanted to.

I’m copying most of the letter below as a summary for you, leaving out details of regression for privacy. In the next blog post, I’ll talk about Zoo Keeper’s summer and our preparations for the coming school year.

You know, the one that starts tomorrow. Eep!



Dear Dr. G,

I’m writing to tell you about Zoo Keeper’s horrible school year and its effects on his general health. His check-up is on Monday, 8/15/2016, and these are things I don’t want to tell you in front of Zoo Keeper. He knows all of it, but is only willing to talk about it in short bursts.

Last fall, Zoo Keeper’s school got a new principal, new secretary, and a brand spankin’ new third grade teacher. He was also switched to a new special education teacher, but I didn’t know that until after school started. Apparently, they changed the procedure sometime after Zoo Keeper started there so that they change special education teachers at the beginning of third grade. Worst time in the world to do that, but that’s another topic.

I trusted his former special education teacher to put him in the appropriate classroom. She is still BamBam’s special education teacher, so we were communicating over the summer and I didn’t know there had been a change until the classroom teacher told me after school had started.

The point of all that is none of these new people knew Zoo Keeper. I have often heard from teachers in other schools that, when a new teacher comes in, the practice is to dump all behavior problems in that classroom if possible. Since nobody on the special education team knew Zoo Keeper, he was dumped in that classroom. His teacher was not just a new teacher at the school. She was new to teaching. And quite young. The class pretty much swept the floor with her.

One of our specialists who observed in the classroom referred to the atmosphere as “competitively disruptive.”

The special ed teacher was…well, ineffective is the nicest thing I can think to say about her. I had to hound her to get the accommodations Zoo Keeper is afforded in his IEP like a Neo (a keyboard that outputs to a file instead of paper). When he did get the Neo, kids would play with it as they passed his desk. Once a girl was dared to delete the story Zoo Keeper and his partner were working on and she did.

Zoo Keeper’s therapist, A, went on maternity leave in August 2015. Zoo Keeper didn’t relate to the woman filling in for her and I know he really missed A. When he started regressing, I thought it was because of this change in routine.

In November 2015, Zoo Keeper had an episode of cough variant asthma. I started him back on his inhaler without plainly discussing with him why. Because it never occurred to me that he didn’t know he has asthma. He would try to get me to let him stay home from school, but I kept telling him no because he wasn’t really sick.

A bully in his class told him that he was dying. Specifically that he would die from his cough in five days. Zoo Keeper believed him and thought that I just didn’t care and wouldn’t do anything about it. He didn’t tell us anything until a few days after the five-day deadline had passed. It kills me that he went through that. Once he did tell me, I explained his asthma and told him the inhaler was medicine to help his cough go away. Also how much I love him and that I’d be devastated if anything ever happened to him. And that he can ask me or another adult about the veracity of peers’ statements if they worry him. Which is when he said he told his teacher about this incident right after it happened. Knowing nothing about autism, she brushed it off.

I sent the teacher an email to explain literal thinking and asking her to let us know if anything like that happened in the future.

A few weeks later, an aide who came into their class in the mornings to help everyone took it upon herself to organize/clean out Zoo Keeper’s desk without discussing it with him. He growled at her. He told me later on that he was growling as a warning like a dog would. I don’t know if he would have moved on to biting, but I wouldn’t be surprised if he had.

I explained to the school that he has hoarding issues in addition to executive functioning issues, which include organization. I asked that the teacher who cleaned out his desk not interact with him anymore and told them that he would need support to organize his desk if they really wanted him to do that, but they should really leave it alone for now.

After holiday break, the kid who told Zoo Keeper he was going to die actually threatened our family. As Zoo Keeper relayed it to me that afternoon, the kid said he was going to slice off our dog’s head and kill Sparky, BamBam, and me so that Zoo Keeper would be an orphan. Then he told Zoo Keeper he had talked to me and I told him where we live so he could come blow up our house.

I emailed the principal, teacher, and special ed teacher about it. The principal jumped in and dealt with it. But the kid kept taunting Zoo Keeper. They had writing practice together, just the two students in the hall with a teacher, and the kid would taunt Zoo Keeper whenever the teacher wasn’t looking. We eventually got the school to deal with that, too.

At this point, I realized that Zoo Keeper’s regressions were about much more than just A’s maternity leave. But I also knew I wasn’t equipped to deal with the school problems. The special education teacher talks a good game in meetings and then does nothing. Everything she says in a meeting seems good and it’s only later that I realize we didn’t actually solve the problem I brought up. I needed an impartial third party to keep meetings on track and make sure we got what Zoo Keeper needed, so I hired an advocate.

We had five meetings over the course of four months. Between the first and second meetings, Zoo Keeper told me that another bully in his class locked him out of the classroom during an emergency drill. He also said that sometimes kids throw grass on him at recess, call him names like skinny and grandma, and just generally laugh at him. I was ready to go in and sit next to him all day to make the kids leave him alone. Instead, the advocate helped me draft an email to the school about it. They really took notice that time because of the mention of the emergency drill. We figured out during the meeting that it didn’t actually happen during the drill, it happened after recess the same day and Zoo Keeper just merged the two events.

The day before spring break, Zoo Keeper’s only two friends in the class told him they were leaving the school. The timing was coincidental, but the reason was the same: the classroom atmosphere. This devastated Zoo Keeper, as you can imagine, and sent him into a faster decline. I talked to him about moving to a different class, but he refused because he didn’t want to give up his pencil sharpening job.

We ran into his teacher from the previous year at one point and she commented that she hadn’t seen him smile at all this year, which is out of character for him.

We requested an FBA (functional behavior analysis) and a BIP (Behavioral Intervention Plan) for him. In addition to all the other stuff going on, we had realized he wasn’t doing work or learning anything. He has executive functioning deficits that were being ignored and, once pointed out, not understood by any of the staff.

We talked about his executive functioning issues in every meeting, but they just didn’t get it. The classroom teacher cleaned out his desk not once, but twice more. The second time, she told me that she got him to calm down after walking in the hall for about five minutes. I am surprised he didn’t have a full on meltdown. I wouldn’t have blamed him a bit.

They also gave an assignment for a presentation where they pretended to be the person of their choice based on that person’s biography, but they didn’t break it into smaller tasks (called chunking) for him as we’d discussed in the meetings. When I asked what accommodations they were making for him, the teacher told me she and the special education teacher had gone through his IEP and found no accommodations applicable to this assignment. I asked about chunking and how he was doing on that in class. The teacher said she was sorry I misunderstood, but it was a homework assignment. That fact was in a newsletter I admittedly hadn’t bothered to read, but nowhere on the assignment. She also told me she had already broken it into chunks in the actual assignment in the form of questions the students should ask, at which point I explained what chunking was again and that the special education teacher should be doing it.

The PE teacher told his class that they would be replacing the gym floor over the summer so that nobody would fall on the slick floor and split their head open. Zoo Keeper took this to mean that someone had slipped and busted their head open and was outraged that they weren’t addressing it immediately. Luckily, he told us that when he got home and we let the principal know right away. She and the PE teacher both talked to him the next day and convinced him she had been using hyperbole.

He kept it together well enough to get through the end of school, but he’s built up so much anger that he’s having trouble processing it. It’s always so close to the surface that he doesn’t have time to think things through when he gets angry. He just explodes. Says he can’t think to remember the tools we’ve given him to help calm himself.

A (the therapist on maternity leave) returned in early February and noticed that he had also developed a tick. He kind of bugs his eyes out, for lack of a better description. They started counting the rocks he collected in his pockets on the day of each session. Once he had almost 900. In one day. They’re all over his room, piled a foot high on his dresser, spilling out of zip lock bags from the days he had OT and needed them out of his pockets for that, and filling five or six big boxes on the floor.

And he’s lost weight. I think he will weigh less on Monday than he did at his well-check last year.

We have the BIP and the IEP is now to a point where I think it will actually help. The horrible special education teacher is transferring to a different school. The principal is very in tune and we have a plan to make sure next year is a much better one. But Zoo Keeper doesn’t trust that. He’s afraid to go back to school. I try to keep reminding him that we have a plan. I even typed it out for him so he’d have a visual.

I’m not going to push on the regressions until he’s feeling more stable again. I’m also not pushing him on food, though I think he’s doing a little better in that area now that school’s out. I’m holding boundaries, but trying to give him a wide berth to give him bandwidth to let the stress go.

That’s probably way more information than you want or need, but I wanted to give you the full picture. I’m also including a copy of his FBA/BIP and the latest neuropsych evaluation.



P.S. The kids also call him by his full name, which they know he hates. We are going to legally change his name to to his nickname so he can truthfully tell them his name is not __. And to make sure all the teachers and staff from now on know his name is the nickname.

So please call him by the nickname. Thanks.




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Spring Break Blues

Posted by on Apr 11, 2016 in Autism, Hearing, Sensory | 0 comments

Kid with fingerpaint on hands announcing Spring Break

Kid with fingerpaint on hands announcing Spring Break

I despise spring break. I know moms who look forward to it. They love the idea of free time with their children, unfettered by the constrictions of school. Many of them even enjoy it once it comes. I can’t even enjoy the idea of it because I know the misery it brings.

I know I will reel on Monday when it doesn’t seem as bad as I remembered. I won’t feel bogged down and exhausted as I expected. I know from experience that this is false hope, but I succumb to it every time.

By Thursday I can barely drag myself across the floor. And I’m surprised. Every time. Even though I knew it was coming. I do not understand this phenomenon, but it doesn’t care. In fact, I think it likes it this way. Sadistic bastard, my phenomenon.

This spring break has been particularly frustrating because my hard drive died on the first day. Saturday morning it said, “I don’t want to go,” and then the life escaped from it, only it didn’t leave the Matt Smith version in its wake. So I have been unable to do the things I’ve already procrastinated too long on and was hoping to finish this week. Like taxes. And emails regarding prep for the big IEP meeting that I thought was going well, but now realize not so much. Zoo Keeper found out on April 1st that his two friends in his class are leaving the school effective immediately because the teacher cannot get control of the classroom and several kids repeatedly take advantage of that. Zoo Keeper is devastated as am I.

My anguish over their departure has an additional facet, though. One of those moms told me she had seen changes in her kid’s behavior that she didn’t like. I have seen changes in Zoo Keeper’s behavior that I don’t like. I attributed it to his favorite therapist being out on maternity leave and him starting third grade with a new special ed teacher with whom I am underwhelmed, to say the least. It never occurred to me that the teacher’s lack of control could effect more than his academics. Now I’m wondering if I should have taken Zoo Keeper out of the school as well, though I have no idea where I would put him.

Woman with hands over her ears and a pained look on her face.

Woman with hands over her ears and a pained look on her face.

So this year included computer and school issues, filling spring break with frustration and dread, but there was also the age-old issue of sensory mis-match. I’m an introvert, meaning that being in a group of people, even if I love them very much, drains my energy. To recharge, I need quiet time by myself.

It used to be that the kids needed me constantly and that overloaded my senses. When that happens all day for five days straight, I am in overload overdrive and can barely manage to lift my head off the pillow by the end.

These days, Zoo Keeper has revealed his introvert stripes and prefers to spend much of his time on his own. Plus he’s become kind of surly of late, especially toward me. BamBam, on the other hand, is an extrovert. He spent much of spring break talking to me. He’ll stop for a bit and, just when I’ve started to do something like try to fix problems with the new hard drive, he’s back. Talking to me about what he’s doing on his iPad. Insisting I watch scenes from his Spiderman game that don’t make sense. Telling me to choose which one is my favorite.

That’s what he was doing right before this exchange that I posted on Facebook:

BamBam was talking to me this afternoon while I worked on my computer, trying to fix stuff after the new hard drive was installed. We decided we would take Annie for a walk and BamBam asked if we could do it “right now.” I told him I needed five minutes and asked if he wanted to put it on the timer, but he said he could just use the clock in my office. We noted the time and I went back to work.

BamBam didn’t stop talking, though. He didn’t take a breath until I turned and told him that I could only be ready in the five minutes if I could concentrate on what I was doing and I couldn’t concentrate if I was also listening to him. I asked for two minutes of quiet concentration time. He agreed and we noted the time again. He was totally quiet and I finished ahead of time.

I told him we could go, but he said, “No, that doesn’t work. It’s only been one minute.” He looked back at the clock, waited a beat, and said, “Okay, that’s two minutes. Let’s go.”

BamBam doesn’t mess around with time.

I posted that to show how frustrated I was. But, then, one of my FB friends commented that it was an impressive how we handled it “such understanding and concrete referencing of time.” I had only looked at it through the lens of frustration, but her version helped me see that I was handling spring break much better than I had thought. At least outwardly.

I still hate the hell out of spring break, but it seems I may be getting better at getting through it.

BamBam just told me he doesn’t want to do any camps this summer. Meaning he’ll be home with me. Every. Single. Day. A summer-long spring break. Because I don’t hate the heat of summer enough on its own.


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The Happiest Place on Earth

Posted by on May 15, 2015 in Anxiety, Awkward!, Sensory | 3 comments

We interrupt this writer’s narrative experience of jury duty to bring you coverage of Overstimfest 2015.

Photo of Mickey and Minnie Mouse riding in a parade float alongside a sign that says, "Disney Parks."

Photo of Mickey and Minnie Mouse riding in a parade float alongside a sign that says, “Disney Parks.”

The Quirky family went to Disneyland the first week of May, 2015 to experience what will forever be known in Quirkylore as Overstimfest 2015. Five days in the happiest place on Earth did not go well for these four crazy travelers.

Monday: The flight and trip to the hotel pretty much wiped the parents out. The kids did not care, so the family went from the hotel to Disneyland to stand in long lines. They did get to go on the jungle cruise ride, which was, admittedly, pretty cool. Then they went back to the hotel for a dip in the pool. Unfortunately, Anaheim had traded weather with Seattle for the week, making the pool water a bit nippy. The family pressed on bravely, but decided not to return to the pool for the remainder of the trip. Ravenous from exertion after the very light lunch where the children opted not to eat anything ordered for them in the Downtown Disney District restaurant that did not have chicken strips on its menu, they went in search of a restaurant acceptable to all parties. The La Brea Bakery was the ultimate destination and their braised spareribs turned out to be the best thing this author had to eat the entire trip.

Tuesday: Disneyland and California Adventure Park alternate opening their doors to resort hotel guests an hour early each morning. Tuesday, May 5th, was Disneyland, so that’s where the family began their day. This author woke up with a sore back and, although she spent the early morning icing it, was in a good deal of pain by the time the family arrived at City Hall in Disneyland. They had foregone City Hall the previous day due to a long line and anxious children, but knew they needed to stop there for disability passes if they had any hope of actually getting on any rides. City Hall wasn’t even open yet, but there was already a line. It was decided that the kids and their father would go find a ride while this author waited in line. And wait she did. The line finally started to move and, just before she got to the front, there was an announcement that people needing birthday buttons should form a line to the right of the original line. As she was not in search of a birthday button, this author stayed where she was.

When the Disney cast member helping the original line was finished with the person in front of this author…you know what? I’m dropping the third person stuff because it’s exhausting. When the lady finished helping the person in front of me, she turned to the line that was waiting for birthday buttons, even though she could see me standing in front of her. Confused (and in pain – did I mention the pain?), I said, “Excuse me?” quite politely, I felt. She turned and asked what I needed.

“I’m autistic, as are both of my sons, and I need to talk to someone about accommodations,” I said.

“Okay, you need to go stand in that line over there.” I followed her point to the line that had formed to the left of the original line.

I looked back at her and said, “You mean that relatively long line that wasn’t there a moment ago?”

“Yes,” she smiled.

“So, I’m at the front of this line, but I have to go stand at the end of that line, which goes up stairs with no ramp, to get disability passes so that you can hand out birthday buttons?” Well, I said most of that, everything but the ramp and birthday button parts.

“Yes,” she smiled again. “They made an announcement. Didn’t you hear it?”

“No, I guess I didn’t.” I gave her my best evil eye. She just smiled. “So, I have to go to the end of that line to get the disability passes.”

“Yes,” she nodded this time for emphasis. “Sorry.”

I bet.

So I went to the back of the other line, trying to light her on fire with my laser eyes, and listened to the people in front of me discussing whether or not it was worth it to do the Fast Pass. When I was finally waved inside, I spread my hands on the counter and, with a shaky voice, said, “I’m autistic and I’m pretty close to having a meltdown.” Then I told him what I’d just experienced.

He said, “Technically, all of the people in the party have to be present to do this,” I held up the four lanyards with our 5-day passes in them. And shook them. A little. He began to talk faster, “but, since it would take a while for your family to get back and then you’d all have to stand in line, I’ll make an exception for you. Because this is supposed to be a happy thing.” Uh-huh.

I found the boys, but they were half-way through the line for a ride, so we stayed there. For what felt like hours. I discovered that the two things that made my back hurt more were walking long distances and standing in one place. Like you do when you’re waiting in line. Forever. I don’t even remember what the ride was, but it definitely was not worth it.

Then we rode the monorail and probably some other rides that I don’t remember. I was not happy with Disneyland that day.

Photo of Michelle wearing a hat made from balloons of all colors of the rainbow.

Photo of Michelle wearing a hat made from balloons of all colors of the rainbow.

That night, we went to an Italian restaurant in the Downtown Disney District. Once again, there were balloon animals to be had. Zoo Keeper asked for a shark. BamBam asked for a rainbow hat he then refused to wear. Too big to put anywhere on the table and too windy to put on the floor, Sparky and I took turns wearing it.

Reentry into daily life is taking a lot out of me, so I’m going to stop here and leave the rest of the trip for another post.


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The Jury Room

Posted by on May 8, 2015 in Anxiety, Awkward!, Sensory | 0 comments

This morning went much better than yesterday, the first day of jury duty. Today there was an entertaining pair of pants on the curb at the bus stop. A fellow bus traveler wondered if their owner had been vaporized by someone else or was practicing disapparition and had forgotten his pants. I discovered the bus has a scrolling monitor that tells the time and the cross street for the next stop, so I didn’t mis my stop like I did yesterday. I got to the jury room early, so there were plenty of seats to choose from.

After a while, I wen to get a hot chocolate from the machine in the kitchenette. Upon returning, I found a heavy smoker occupying the formerly empty seat next to mine. Gagging on the smell of stale cigarettes, I left to find another seat, which is what I should have done much much earlier than I did yesterday.

Speaking of the yesterday, I passed by that jerk on my way back from the kitchenette. He was sitting up by the main desk, so, when I moved, I went back to the place I was sitting yesterday. I actually just heard people talking about him back here, so I guess I’m not the only one who returned to this area. The woman who first spoke up is here, sitting in the same seat. She jumped a little when she saw me, which makes me feel bad all over again.

But wait!

I haven’t told you about yesterday yet. Let me back up.

At the very back of the jury waiting room, there’s a little alcove with four round tables. The chairs are even less comfortable than the ones in the main jury room, but the tables make up for that for people with laptops or notepads, like me. I ended up back here yesterday simply because it was the only seat I could find, but I liked it. At first, anyway.

Frustrated muscular man with thought balloon sits next to loud man on mobile telephone. Thought bubble says, "OMG! STFU!"

Frustrated muscular man with thought balloon sits next to loud man on mobile telephone. Thought bubble says, “OMG! STFU!”

After orientation was over, a man at the next table began to talk on his cell phone. Loudly. In French. Continuously for what felt like an hour. I realize now that this probably was not annoying to most of the people around us. But after a 45 minute bus ride with people standing in the aisle and missing my stop because I couldn’t see street signs and a long walk with an even longer line to get in to the courthouse, meaning I was late, which is why there were no other seats available and nowhere I could move to get away from the French phone call, I was pretty much one big exposed nerve. I couldn’t concentrate to write, which didn’t really matter anyway, as my legs were bouncing away (one of my stims) and I was trying not to touch the table so that I wouldn’t make it shake.

Eventually, the woman sitting next to me – the one who reacted when she saw me today – said to me, “Is that bothering you, too?”

As I replied affirmatively, so did a second man, who was sitting behind the woman, in a seat not affiliated with a table. He added that it’s really rude and how people have no consideration for others anymore and how he had been accosted by people in the line to get in the courthouse simply because he refused to let a woman cut in front of him.  The woman who asked the question gave him a blank look, which is when I realized she was talking about the intermittent squeaky noise coming from the wall opposite us.

“Oh, you mean the noise,” I said.

“Yes,” she said, as the man behind her said, “No, the guy on the phone.”

I nodded at him and said, “Me, too.” I told the woman I thought the noise was one of the air vents or something with a joint that needed oil.

The man behind us got up and down a few times, sometimes saying stuff about rude people on phones, while the French man went right on talking and consulting his iPad as if this were his private office.

There were four other women sitting at the table with me. The upset man finally said to us, “Is it just me?”

This is the part I regret. I said, “No, it’s not just you.”

He nodded, got up, and began to berate the French man, who ignored him for a few minutes, then stopped talking into the phone and looked up from his iPad. “Are you talking to me? I’m sorry, I didn’t realize you were talking to me.” He said that a few times while the other man continued to rant, and then the French man left the area. Pretty graciously under the circumstances.

Everyone in the area was stunned. I was ashamed by my complicity.

Over the next hour or so, the women at the table with me would try to talk to each other. Not to me, which was fine by me, but each other. The angry man would invariable insert himself into the conversation, talk over everyone, and not notice that the original conversants had gone back to staring at their devices.

There was one point where he began talking about how we’re not supposed to talk to anyone or seek out news regarding a trial we’re on (that was part of the jury orientation) and how he would disregard that were he chosen because they don’t tell you everything in a trial. They throw out the information you really need to make a decision, so he would look that up on the internet or watch news programs for it.

You know I couldn’t stay silent for that, right?

I said, “And you think you’re going to get the information you need from the media?” He missed my point and kept right on talking.

One by one, the other women at my table got up and left the area. In fairness, two of them were called to courts for jury selection, but still.

New people wandered in to fill the empty seats, including the one vacated by the French man. And people began to talk on their phones. Not like the Frenchman; these people were making an effort to lower their voices and the calls were short. I even made one to cancel an appointment I’d forgotten for today. I went over by the bathrooms to do it because I thought that would be quieter, but a woman just did the same thing a few minutes ago and it actually acts like a microphone. Oops.

The angry man began to grumble again. As I took my seat after my phone call, he bagan to rail at a man sitting at the French man’s former table. This time, though, people around the alcove defended the man on the phone.

“Hey, his mother just died and he’s making arrangements.”

“He’s not bothering anyone.”

“We all have to be here, let’s just be tolerant.”

Cartoon businessman standing, angry and yelling on phone.

Cartoon businessman standing, angry and yelling on phone.

The angry man escalated. He yelled about how he has sick relatives and is missing work, he’s not bothering people with his phone calls. “People should take it outside! Maybe I should just call my friends and talk really loud for an hour. See how everyone likes that!”

One of the other men said, “Go ahead. Nobody’s going to say anything about it. You’re the only one who’s being rude here.”

So he got on his cell and began to pace around, telling the person he called about his new “friends” (quotation marks his) and how they were persecuting him and everyone is out to get him.

That’s when I walked away to another area. Shaking. They let us go for the day not long after and I was still shaking when I got home. I was still arguing with him in my head this morning, even though I said nothing at the time.

I found out today that the man whose mother had died has been on a jury for six months and they wouldn’t let him leave to take care of business for his mom. They have run out of alternates and, if they’d let this man go, it would be declared a mistrial and the six months would have been a wasted effort for everyone involved. Apparently jurors on that trial have had all kinds of things happen: one fell off a ladder, one’s mother had a heart attack, one woman’s job refuses to pay her while she’s serving. There were others, but I couldn’t write fast enough. I don’t know what kind of trial it was because you’re not allowed to say – because they don’t want people giving you their unsolicited opinions about whatever the alleged offense is – but I’m guessing murder. What else would take six months to try?

At noon today they let all but 20 of us go home, having completed jury service if you hadn’t been called by that point. Guess whose name was called last to stay for jury selection. Me. The angry man isn’t staying, but the woman who reacted when she saw me this morning is. I really hope we aren’t both chosen for the jury.

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The Price of Interaction

Posted by on May 1, 2015 in Anxiety, Executive Functioning, Sensory | 1 comment

Illustration of an anxious-looking girl in a blue dress standing against a wall.

Illustration of an anxious-looking girl in a blue dress standing against a wall.

As many of you know, Book Club Maven died earlier this year. Her service and celebration of life reception were held a week after her death. I spent the reception standing against the back wall with another introverted friend, sipping wine and watching the slideshow of BCM pictures. I even heard the term wallflower used to describe us. It wasn’t that I didn’t know anyone or didn’t want to interact; this is just what I do when I’m overwhelmed. By crowds. By noise. By emotion.

As the evening wore on and the crowds thinned, several friends made their way over to talk to us. We got to hear the story of how they got together from BCM’s husband. He tells it much better than BCM did (sorry, babe!), though that may have to do with the wine and fewer interruptions from small children. It’s a funny story and, if you know Mr. BCM, I recommend asking him about it.

I didn’t see much of Marathon Girl or Cookie or Hostess, who flew in from California to say goodbye. I think that was a little bit protective, on my part at least. I love them dearly, but I wasn’t quite ready for the four of us to be together without BCM. It was too soon for me. I’m not really in denial, as I’ve been claiming lately. I know she’s gone. I just prefer not to remind myself of her absence at the moment and I can’t do that when there’s an obvious gaping BCM-shaped hole in a group.

When the evening was almost over, some of the members of the book club BCM started (hence her alias of Book Club Maven) six years ago came over to talk to me. I stopped going to book club around the time the boys were diagnosed. There was just too much going on for me. They have decided to keep the club going and asked me to return.  I told them I would like to, which is true, but that I couldn’t on the date they were suggesting because I have jury duty, which is also true.

“Jury duty will be over by then.” This is also true and I totally understand why it was said. For a non-autistic extrovert, that fact must seem pretty straight forward. For an introverted autistic, it’s anything but.

Now, I want to preface what I’m about to write with the fact that I am beyond excited about being called for jury duty. I’ve always wanted to serve on one and this is the first time I’ve ever been called.

But I’m also dreading it. That’s true of most new activities that take place outside of my house, whether they are things I’m excited about or not.

Illustration of a city block jam-packed with buildings and cars and signs and people.  This is what my brain does when I try to plan a trip to somewhere new.

Illustration of a city block jam-packed with buildings and cars and signs and people.
This is what my brain does when I try to plan a trip to somewhere new.

First off, I need to plan things, especially new things, so I can be prepared. The more prepared I am, the less energy I have to devote to switching gears in my head to deal with unexpected situations. Most people who know me have no idea that unexpected situations drain my energy because I’ve spent 46 years perfecting a neutral facade. The problem with that is the facade costs energy, as well. So, before I’ve even begun to expend energy on the unexpected thing that’s come up, I’ve already spent some of my limited-to-begin-with energy on switching gears in my head and on upholding my neutral facade. Planning helps me save that energy for other things.

With jury duty, you have to call the court after 5pm on the day before you’re supposed to report to see if they even need you to show up. So, ability to plan for that day is out the window.

If I do go that day, there’s no way for me to know how long I’ll be there or whether I’ll need to come back the next day. Or the day after. So, there goes the planning for the whole week. I’m exhausted just thinking about it. The one thing I have a little control over is transportation. They sent a bus pass with the jury summons, so all I have to do is choose between driving myself or taking the bus, right? Yeah, not so much.

Driving myself means parking downtown, where parking is scarce on a good day. Even when you can find a space, it’s tiny and impossible to get into. Or it’s street parking, which generally means parallel and I suck at parallel parking. Then there’s traffic, which is unpredictable by definition, but right now my city has decided to block every exit from our neighborhood with construction – the kind that brings the street down to one lane, so the flaggers get to decide when it’s your side’s turn to use the lane.

The bus, on the other hand, means I don’t have to park. And it’s better for the environment and for my health (lots of walking to the bus stop). Unfortunately, it also means less predictable timing. I could miss the bus or it could be running late.

And it means exercising my poor sense of direction. Which side of the street do I stand on to catch the bus, for instance? I used to take the bus to the job that brought us to Washington in 2001. I took two buses, transferring to the second in the University District. On the first day, the only information I could get out of people was to stand on the north side of the street. That doesn’t help much when you’re standing there trying to figure out which way is north. “You can’t miss it,” is like throwing down a gauntlet for me. “Watch me,” I say. I miss turns and big pink buildings and landmarks all the time because it’s hard for me to concentrate on driving while looking for signs. Most people don’t know this about me because I plan and practice and leave early to make sure I have time to correct whatever I mess up.

I have a friend who lives on a cul de sac off a street with thee culs de sac that look identical to me. I once asked her at a party to remind me which street she lived on. I thought I had been really nonchalant about it, but she gave me an incredulous look and said, “It’s on the route you walk.” Which is true. I walked by it every time I exercised, about three times a week at that point. Then she said, “And you’ve been to my house.”  Which is also true. And I ended up at the same wrong house before eventually finding hers every damn time. I tried to laugh it off, as if I had been joking, but I think she was still having weird thoughts about me.

So, while riding a bus, I worry about missing my stop. I’m constantly trying to see street signs that are impossible to see from inside the bus. The bus driver calls them out, but…audio processing disorder! I can’t hear them with all the noise of the bus and the road.

And then there are the people. Buses can be crowded. I abhor crowds. Individual people are fine, but crowds are noisy, touchy, smelly, grumpy fiends, myself included.

I’ve spent weeks deliberating: drive or bus, bus or drive. Still no decision and it’s coming down to the wire.

Once I get to the jury room, I imagine it to be a big room of noisy, touchy, smelly, grumpy fiends, much like the bus. Only these people are extra annoyed because they have been compelled to leave their regular lives to be there. And, in the jury room, they’re not going anywhere; they’re just waiting. What level of Hell is that, Dante?

I’m hoping that waiting will result in me getting to actually serve on a jury, but there’s not even a guarantee of that.

So, after a day of ups; downs; crowds; noise; anticipation; and disappointment, I’m guessing I’ll need a lot of time to recharge. I believe that extroverts do that by going to a party or hanging out with friends, blowing off steam. If I did that, it would not be restorative in the least. Rather, it would further deplete my energy stores. I would likely snap at a friend for saying hello too loudly. She, and likely our friendship, would be hurt and  I would be embarassed and ashamed.

No. After jury duty, I’ll need to go sit in a corner by myself for awhile. Probably a very long while.

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Daisy the Dog

Posted by on Mar 27, 2015 in Autism, Sensory, Smell, Touch | 0 comments

Zoo Keeper’s class for the last three years has written persuasive letters. Zoo Keeper’s are always to me and always ask for the same thing: a dog. Until this year, I’ve had solidarity with BamBam, who was afraid of dogs. He started kindergarten this year, though, and has adopted his brother’s persuasive letter subject.

Ben Persuasive letter kindergarten

Now BamBam says he’s ready, leaving me as the sole hold out.

Which is crazy, as I’m this family’s original dog lover.

But that also means I’m the only one who knows all that having a dog entails. What it means to raise a dog. And what it means to lose one.

I have lots of reasons for waiting. Most have to do with time and freedom from constant needy companions. In this one area, I’ve been willing to put my needs first.

But last week, for reasons likely related to the death of my best friend, I decided it was time.

I told the boys it will be soon, but not now. Then I went on Petfinder and found two awesome dogs. I applied for both, but only heard back on one.

This is Daisy.

This is Daisy.


Daisy is supposedly part husky and part shih-tze. I drove two hours to see her on Friday night, planning to bring the boys back to meet her on Saturday and, if that, went well, bring her home with us.

I wasn’t at all convinced the meeting with the boys would go well because I think BamBam is still skittish about dogs, but I never dreamed I would be the problem.

Daisy was perfect for our family. Potty-trained; friendly; playful, but not hyper; outgoing. She even rolled over so I could pet her tummy.

She has a flea allergy, but we could control that with meds. She likes to run and is a bit of a flight risk, but so is BamBam.

As I pet her, I could feel the oils from her skin on my hands. Not what I’d expected. I rubbed my fingers together, thinking it wasn’t as bad as what I get with Labradors, so maybe it would be okay. I held that hope until I got out to the car and found that I couldn’t bring myself to touch the steering wheel.

I tried using a wet wipe. It didn’t make much difference, but I was able to grip the steering wheel enough to drive. I drove around the darkened town until I found an open fast food restaurant. I went straight to the bathroom to wash my hands. Of course, they had the nasty-smelling soap. So gross, but at least it got the oil residue off.

I got some food and sat thinking while I ate. This dog seemed so perfect, but could I live with needing to immediately wash my hands every time I touched her to keep my skin from crawling?

And would one of the boys have the same problem? What if they fell in love with this dog and we had to say no?

I was still debating when I got home and told Sparky how perfect she was save this one thing. He said, “Then she’s not perfect.”

So I sent an email to the foster mom letting her know we wouldn’t be there the next day.

That night, I hovered between sadness and relief, but now I’ve come down firmly on the relief side.

I posted about it on facebook. One friend said she was allergic to the oil on her dog’s skin, but she just bathed him every week and it was fine.

Before I knew anything about autism, I probably would have brought Daisy home with me and done just that. I would have suffered in silence because this dog was perfect in every other way. I would have assumed there was something wrong with me and kept quiet about it so no one would notice that I’m not normal in this way.

One of the perks of accepting I’m autistic is knowing I’m not obligated to pass for normal. I can love Labradors and husky/shih-tze mixes without making one part of our family.

And I can do that without explaining myself, though I’m sure I will whenever I talk about it because that’s part of who I am, too.

And I can keep looking for the right dog for our family. For all of us, which includes me and the dog. Without suffering, silent or not, for any of us.

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