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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Yes, I Can Hear You

Posted by on Jul 18, 2014 in Autism, Hearing, Sensory | 2 comments

Sparky, man among men, told me to go stay at a hotel for a few days. That man rocks! The air conditioning in this hotel? Not so much. So, I stepped out to have lunch with a dear friend while they fixed it. Lunch was wonderful; air conditioning is on probation.

On my way back to the room, I was joined in the elevator by two women who were having a conversation about the color a friend had chosen for her wedding. I think; it wasn’t all in English. The elevator here has no carpeting in it, so the acoustics are…intense. As the doors opened and we got in, the volume of their conversation amplified ten fold. It reverberated off the walls and made my ears throb. All I could think was, OMG! don’t they know how loud they’re talking? I guess they didn’t because they didn’t lower their voices an iota. I’d probably be deaf by now if they had gone further than the second floor. I’m only mostly kidding about that.

So, yeah. Loud noises. Not a fan.

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Where’s My Partition?

Posted by on Jul 11, 2014 in Autism, Hearing, Musings, Sensory | 5 comments

Stressed MomI wrote this a few months ago, but it applies well to this week and I think it will speak to any parent shuttling kids around this summer. This week, we had the boys in camps that are about a 30 minute drive from each other. Neither kid wanted to attend the camp I chose for him. The schedule was different from last week and will be different from next week, so it’s been like a double transition week. Any kind of transition is extra fun for us. Add to that the fact that only one of our collective seven therapies was on its regular time/day. Oh, and we have family both visiting and moving to the area this week. And it’s hot and dry here, expected to remain that way through September thanks to El Niño. Let’s face it: I’d be cranky if the heat were all that was going on.

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