Illustration of a boy wearing a backpack and running, sweat dripping from his face.

The first day of school in our district this year was September sixth, the day after Labor Day. We knew there would be wrinkles to iron out and were all apprehensive about what those things would be.

First thing, traffic was terrible. We would have walked, but I had a bag full of additional supplies to take to BamBam’s teacher and I didn’t want to carry them all the way to school. Had I remembered how full the parking lot gets between the parents staying for the First Morning Coffee and the ones who have no clue about drop off procedures, I would have either sucked it up and carried the supplies or put them off for another day.

But I didn’t remember and we were stuck trying to pull in to the parking lot a few minutes before the first bell. So Sparky stayed in the car while the boys and I ran for it. Not fun for all the neurotypical kids, so you can imagine how it was for us. BamBam said he was fine taking the supplies to class on his own, so Zookeeper and I headed to the office on our own.

Once we got through the front door, the first wrinkle hit. Zookeeper, a little ahead of me, walked right past the office and was headed outside when I stopped him. Even though we had discussed it the night before, he didn’t want to go to class through the office. He insisted that he would be fine waiting in the line with his classmates.

I knew we were both already overloaded and frantic, so I did my best to remain calm as I reminded him of the trouble he’d had with bullies in the morning line-up the previous year. I told him again that the plan was to go through the office, just so they could see his pass, and continue upstairs to his classroom where he would get his schedule and maybe sharpen a few pencils before going with his teacher to bring in the rest of the class.

Then I frog-marched walked him back to the office, showed the secretary his pass, and watched him walk through the office hall toward the stairs leading to his classroom. Sparky appeared as I was figuratively dusting my hands off from the effort.

After which I went to the parents’ coffee, where I was somehow talked into becoming the special needs liaison for our school’s PTSA (Parent-Teacher-Student Association). A position I’ve been turning down for a little over two years now. I agreed with the precept that expectations would be kept very low.

I waited with much anticipation to pick the boys up and hear about their days. BamBam had a terrific day, as I knew he would. Zookeeper’s day, however, was, “Meh.”

When asked what that meant, he said, “Well, you know Lamb is in my class.”

Illustration of a smiling wolf wearing a sheep costume. Bless his heart.

Lamb is a boy who has plagued Zookeeper since first grade. I’m calling him Lamb here in the same way Southerners often say, “Bless your heart.”* Lamb was in Zookeeper’s class last year, but wasn’t a problem for him because there were so many other negative things going on.

“He sits right next to me. He took pencils away and threw paperclips at me in class. Coming in from recess, he stuck his hand in my pocket to steal some of my rocks,” Zookeeper told me. He said everything else was fine, but you could tell this had squelched any hope he had for a better year.

I thanked him for telling me and being so open about it, then told him I would write an email to his teacher and have them separated.

His teacher emailed me back saying she had noticed the dynamic between them and planned to move their desks the next morning. She had also had a talk with Lamb about the rocks and planned to reinforce the rules the next day. I am so thrilled with her communication and the fact that she noticed, and acted, right away. It restored my hope, and I think Zookeeper’s, for a much better year.

Next week, I’ll tell you about how things are going with Lamb. Because, unfortunately, there is more to tell. But everything else at school is pretty good and that has our whole family smiling again.

*My mother has always said, “Bless your bones.” I never really thought about how the two phrases differ, but I like the explanation that heart is more superficial because getting into the bones is deeper, more like getting to the core of your being.

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.

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.

Thanks,

Me

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.

 

 

1984-1985 Montage 
Tom is in the group on the right, the one kneeling on the left. Tracy is opposite him sitting on the floor.

Sometimes I post pictures from high school on Facebook and people comment about themselves in the picture or ask the names of people they can’t identify.  A few years ago, I told my friend, Tom, that I would post the recordings I have from high school choir on my blog so he could listen to them.

But I never did it.

And then Tom died unexpectedly a little over two months ago. He had a wonderful life that I know he loved. He got to spend most of it with the love of his life, his high school sweetheart Tracy. Tom posted a picture of him holding their newest granddaughter shortly before he passed. He looked so proud and it breaks my heart that she won’t get to grow up in his presence. I know Tracy and their family will keep him alive for her through the stories they tell, which is great, but it’s not the same.

Tracy and Tom posing in their drum major uniforms.

Tom and Tracy were seniors when I was a sophomore, so we were only in choir together for a year, but they made a huge impression on me. They were married for over 30 years. I can’t even imagine how much she misses him. I was always amazed by Tracy’s talent. She was the accompanist for Montage AND sang alto at the same time. She and Tom were Drum Majors for the marching band. See?

Tom had autism in his family as well. He was always incredibly supportive about my experiences with the boys and encouraging of this blog. I hope he knew how much I appreciated it. I know he would understand why it took me so long to post the music from our year in choir together.

I’m so sorry I missed him, but I’m finally posting recordings from the 1984-1985 Montage choir. I’m hoping Tracy gets a smile from the memories.

I’ll post all of the music I have, including what’s here, on a static page later this month, but this post is for Tracy.

Montage Cavalcade 1985

*I just realized there’s a medley of Cats we did my sophomore year that’s missing from what I’ve got here. I don’t have time to find it tonight, but I’ll add it here when I do. Fingers crossed for tomorrow…