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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Autistic Muppet

Posted by on Oct 26, 2015 in Autism, Autism in Adults, Autism in Children | 1 comment

They were talking about the new Muppet on NPR this afternoon. When Zoo Keeper heard that the Muppet is autistic, he said, “Like us!”

Yes, like us. Sort of.

I first heard about the autistic Muppet from Sparky, who sent me a direct link to the Sesame Street autism website. I was thrilled. An autistic Muppet hanging out on Sesame Street? How cool is that? Not only will Sesame Street be bringing autism awareness and acceptance directly into millions of homes, they’ll be showing about it rather than telling.

I went to check out the site. I’m not crazy about the theme song, but the videos for parents are great. BamBam has moved away from Sesame Street, but I couldn’t wait to pull him back in to check Julia, the new Muppet, out.

Then a friend sent me this People article about the new Muppet.

Frankly, I was crushed. I couldn’t believe  that the autistic girl is only a digital character. The article says that’s because “Families with autistic children tend to gravitate toward digital content, which is why we created Julia digitally.” Whether that’s true or not, this content shouldn’t be targeted toward families with autistic children. Don’t get me wrong: it will be great for autistic children and their families to see, Zoo Keeper’s certainly excited about it, but those families already know about autism. They live it. This content needs to be pervasive.

I don’t believe the general public will go out of its way to watch this digital content any more than they will seek out information about autism until it affects their lives in a personal way.

What Sesame Street really needs to help society move closer to autism acceptance is a physical autistic muppet to interact with Abby and Elmo on the actual show. Every day. Make her part of the group. Include her in outings and show how she might react to different situations. Don’t make it about autism. Make autism a part of the show.

For that matter, include a non-verbal autistic adult among the other adult actors on the show. Let everyone see that autistic people are just people who, though they may need accommodations to participate fully, are part of our society. Because autistic kids aren’t on the playground for one short, isolated segment of time and then gone any more than those same autistic kids disappear when they grow up. Available services and support disappear, but we’re still here.

That’s what I think, anyway. #SeeAmazing

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Routine Change

Posted by on Apr 10, 2015 in Autism, Autism in Adults, Autism in Children | 0 comments

I had lofty goals of writing a treatise on the state of special education in America this week, but then I remembered it was spring break. I think the only person in this house who handles change in routine remotely well is Sparky. He’s also the one who’s routine doesn’t really change this week.

In anticipation of having no time to myself this week, I signed both boys up for farm camp. It’s only three hours in the afternoon, so there’s plenty of time left for free play. The theme is barnyard animals and they were both really excited about it.

Until they got home on Monday. Well, Zoo Keeper is still excited about it, but BamBam refused to go back on Tuesday. When we picked Zoo Keeper up that day, he took BamBam and me to a clearing where two streams meet. He had discovered it last summer when he attended a similar camp. BamBam thought it was hella cool, but was mad that I wouldn’t let him step into the stream like his brother because he was wearing Crocs. With socks, because that’s how we roll in Seattle.

BamBam agreed to go back to camp on Wednesday because he wanted to wear boots back to the stream afterward. I probably should have told him that we could have gone back to the stream even if he didn’t go to camp, but I was concerned about what he would do with that information.

AllergiesAs we walked toward the camp building, he said, “I’m wearing my Batman boots to camp so I can go jump in the stream, but I’m not going to learn anything about animals because I’m allergic.”

“You’re allergic to learning about the animals or allergic to the animals themselves?”

“Um, I don’t know. I don’t actually know what allergic means.”

I explained what allergic meant and that you can’t be allergic to learning about something, then dropped them off at camp. We went to the clearing and BamBam was in it all of two minutes before the running water did it’s trick and we had to go find the bathroom. Except the bathrooms are closed for the winter, so BamBam had his first port-a-potty experience. I held the door open and coached BamBam on what to do while Zoo Keeper complained about the smell. BamBam was worried at first because there was “stuff” already in the toilet. I told him that was because you don’t flush a port-a-potty, to which he replied, “I don’t have to flush? Cool!” and did his business.

It’s now Thursday afternoon. BamBam is home from camp again. After he finished yelling at the Angry Birds Go app on his iPad (“Hey! No Fair! That’s cheating!” repeated at full volume several times – his volume goes to 11), he moved from the living room to the chair next to my desk in my office treating me to a stream of consciousness monologue about how many minutes are passing. They’re going really slow. Part of that may be because he’s counting them out of order.

My mother’s response to hearing this was, “Not sure why, but I seem to have a picture of you, at his age, in my head.”

Have I mentioned that I hate spring break?

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A New Plan

Posted by on Aug 1, 2014 in Autism, Autism in Adults, Autism in Children, Writing | 6 comments

ChangesAheadI was working on a post about how miserable I am when the temperature goes above 75°F, but have decided to table it until next week. Don’t get me wrong, I still find it nigh impossible to function in the heat, I’ve just found a topic that’s worth the Herculean effort this sweltering (to me – don’t judge) this Thursday afternoon.

I wrote last week about the pending re-evaluations for the boys. We won’t have the written reports for a month or so, but Sparky and I met with the neuropsychologist yesterday and were blown away. In addition to autism, he had a new diagnosis to add for each boy. Zoo Keeper has nonverbal learning disorder and BamBam has ADHD. I made a joke with that one about it being no wonder I’m so tired all the time, but rather than taking it as I intended, he said, “Well, yeah.” Then he told us that in a room of 100 five-year-olds, BamBam would be one of four who were unable to control their impulses. The other 96 would all have the ability to focus and their parents wouldn’t have to follow them around reminding them not to touch this or that and then taking it away from them when they touched it anyway.

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The Lineup Exposed!

Posted by on Apr 18, 2014 in Autism, Autism in Children | 0 comments

Congratulations to those of you who guessed BamBam! Here’s how I knew:

Zoo Keeper likes to set up zoos, BamBam likes to line things up.

That’s the simplistic reason, though, and not the thing that made me smile when I saw the animals on the bookshelves.

Here are pictures of one of Zoo Keeper’s zoos when he was BamBam’s current age of five years old:

Photo of a bookshelf with books in disarray, animal figurines standing in various places.

Photo of a bookshelf with books in disarray, animal figurines standing in various places.











Another photo of the bookshelf, this time only the bottom and floor in front of it. Several books are placed on the floor, each with its own animal figurine on top.

Another photo of the bookshelf, this time only the bottom and floor in front of it. Several books are placed on the floor, each with its own animal figurine on top.









See how the animals are in groups? And each group is in its own space – an individual book or pile of books or area on a shelf? Even the petting zoo on the top shelf (with the cow on the right) has each animal in its own space. Zoo Keeper is very strict about keeping each animal in its proper habitat.

BamBam used to line up cars and trains. That’s a pretty classic autistic trait. When he began to play with Zoo Keeper’s animals, he would line them up as well. The elephants would all be standing in a straight line, facing the same way. Zoo Keeper was okay with that. Eventually, though, BamBam started to mix the animals up. It drove Zoo Keeper crazy when he found the flamingos visiting the zebras and the gorillas lounging in the hippo pool. Accusations flew. BamBam was unapologetic.

This morning, when I saw the lineup on my shelves, I knew it was BamBam’s handiwork, but I also realized something new. He has a story behind each arrangement. It shouldn’t have surprised me, but it did. I think it was the penguin on the book that made it click for me.

I took pictures from different angles and my own stories popped into place.


German Shepherd and Chetah, hungry and tired of running, have persuaded baby zebra to follow them around the corner into the alley behind A Casual Vacancy.

German Shepherd and Chetah, hungry and tired of running, have persuaded baby zebra to follow them around the corner into the alley behind A Casual Vacancy.









Baby Zebra spies an observer and says, "What? Bad idea?"

Baby Zebra spies an observer and says, “What? Bad idea?”










Elephant, Red Panda, and Penguin wait for the parade to start.

Elephant, Red Panda, and Penguin wait for the parade to start.








I imagine myself to be the gorilla. I'm just waiting for the penguin to get the fuck off my book.

I imagine myself to be the gorilla. I’m just waiting for the penguin to get the fuck off my book.

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The Lineup

Posted by on Apr 11, 2014 in Autism, Autism in Children | 1 comment

Quirkyland is experiencing spring break this week, so I’m just going to write about something I noticed this morning. I sat on my bed to put my socks on and looked up to see plastic animals arranged on the bookshelves. I knew immediately which kid had been in our room and it made me smile.

Sparky and I used to restrict access to our bedroom because we wanted to limit the number of drawers toddlers could rummage through and we didn’t want to put baby locks on the ones in our bedroom. If I leaned over to my nightstand at 3am to get a cough-drop and couldn’t open the drawer…let’s just say things might get broken.

Now that they’re older, though, we generally leave the door open and they come in sometimes. Now that they have free access, our room is kind of boring for them, so they’re usually looking for one of us.  Sometimes, after a shower or something, I’ll come in the room and notice that the boys have rearranged things for us. Lucky for them it’s usually not the folded laundry waiting to be put away.

I’m going to post two pictures I took this morning below. See if you can tell whether this was done by Zoo Keeper or BamBam. Put your guesses and reasoning in the comments and I’ll post the answers and background next week.


Zebra, cheetah, and dog figurines walking across a bookshelf.

Zebra, cheetah, and dog figurines walking across a bookshelf.








Elephant, Red Panda, and Penguin standing on the edge of a bookshelf, all facing the same way. Penguin is on the pewter gorilla bookend; perched atop the open book held by the ape.

Elephant, Red Panda, and Penguin standing on the edge of a bookshelf, all facing the same way. Penguin is on the pewter gorilla bookend; perched atop the open book held by the ape.


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