Excuses

Posted by on Oct 31, 2016 in Anxiety, Autism, Musings | 1 comment

Illustration of a boy shrugging his shoulders.

Last week’s post about things I’d like to take a break from has me thinking about excuses. Excuse used to mean a reason. Like an excused absence in school meant that you had a verified reason for being gone, usually that you were sick. It seems to me that it’s become something else entirely in today’s vernacular. Now I feel like it means an illegitimate reason; a way to get out of something you should do, but you just don’t want to. A justification.

It’s really always been both. I know that. I guess I’m saying it feels like the latter has overtaken the former.

Last summer, I got a summons to serve on a jury at the end of August. I had served on two juries in the previous 18-months, the first county and the second federal, so I could legally be called for county jury duty again. I could have served, as I’d done before, by arranging after-school care for the boys and canceling their therapy appointments I wouldn’t be available to drive them to. But I knew that Zookeeper would need all the support we could muster to make this a good school year from the first moment and convince him things would be completely different from the horrors of last year.

So, there was a legitimate reason I couldn’t serve at the end of August. I could defer my service, as I’d done when I was called for service in December last year, starting on the first day of winter vacation, but I didn’t want to. I wanted to be excused. While it’s true that I didn’t know how the year would go or when I could expect things to settle down enough to leave Zookeeper in after-school care and skip therapy sessions, it didn’t feel like a legitimate excuse not to serve. It still doesn’t, though that may be due to the fact that this school year has gone so much better than anticipated.

Still, I went online and asked to be excused because my autistic son was recovering from a traumatic school year and I didn’t feel it would be healthy for him to miss a single session with his psychotherapist, the only person he’s completely comfortable being honest about his feelings with, because I couldn’t take him. I felt like they would tell me to get real; that everybody has problems and I would just have to figure it out.

But they didn’t. I was excused almost immediately, without any follow-up questions. And I feel as if I’ve gotten away with something.

On the other hand…

When I first started talking about my own autism diagnosis, a friend made a comment about probably also being on the spectrum, but refusing confirmation for fear of using it as an excuse not to go to the gym. Presumably due to sensory issues and coordination. That really got to me and I became adamant that autism is not an excuse. You may need accommodations to go to the gym, but that’s not an excuse. It’s a need. And it’s okay to have needs. It’s imperative to have needs and seek to have them met. Every living thing in the universe has needs. It’s the nature of life. But I find it embarrassing. I don’t want to have needs. I’m happy meeting the needs of others, I just don’t want to have any myself. And I think that’s somehow selfish.

That paragraph went somewhere I wasn’t expecting. My intent was to point out that autism is not an illegitimate reason; that it’s okay to accept that something is outside your capabilities or that you need help to achieve it. But I went inside my own psyche instead. I went to one of my deepest fears: to have a need I cannot fill on my own.

Maybe showing that fear is appropriate for Halloween.
Illustration of a boy dressed as a superhero posing with thumbs up behind a sign that says, "The Perfect Kid."

The final example I planned to share involves a conversation with my mother-in-law. She visited us the summer before she passed away. She and I were sitting at the kitchen table together one afternoon talking about the boys. She complimented them on something and I immediately began my “yes, but…” refrain. My intent, as I discussed in the Break post, was to be open about the struggles we’ve been through to achieve whatever it was she was praising the boys for and about how far we still have to go. Well, to be honest, my intent was probably more to make sure she understood than to be open about it. I have a need for people to know that. I also have a need for people to know how wonderful our boys are. Which version of things you get depends on where I think you’re coming from. Since she hadn’t born witness to the struggles, I assumed my mother-in-law was coming from the “look how easy it is” camp.

Her reaction surprised me. She said, “Well, I think my grandchildren are perfect,” and walked away from the conversation.

I think they’re perfect, too. I resented her rejection of my need to show the struggle for a long time. Until after her death, really.

But now I think that maybe she understood that there was struggle and that there was nothing she could do about it, so she wanted to focus on the good. Maybe she feared for them because I seemed not to see their beauty.  Maybe we were saying the same thing, but approaching it from opposite directions.

I like to think we understand each other now; that we both see their beauty and love them unconditionally, no excuses necessary.

 

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First Day

Posted by on Sep 26, 2016 in Anxiety, Autism, Executive Functioning, Impulse Control | 0 comments

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

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.

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.

 

 

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Nervous Much?

Posted by on Sep 19, 2016 in Anxiety, Autism, Awkward! | 0 comments

Image of two people falling from a tightrope, one of them grabbing the rope with one hand and the second person with the other, thus saving them both.I didn’t get much sleep this week. I had three meetings and the nerves really got to me. Two of the meetings were for school and the other was just for me.

To recap the plan from last week’s post, we needed

  • FBA/BIP and accommodations to be in place – √ (Yes, I know that’s a square root sign, but I couldn’t find a checkmark. Refer to first sentence of this post.)
  • Officially change Zookeeper’s name and submit it to school – √
  • Meet teacher and special education teacher before school starts – √ and meetings to be described in this post
  • Mom talk to class about autism – much sweating, hemming, and hawing has commenced regarding this step
  • Mom/Dad check in with Zookeeper every day/week and make changes as needed – √ and I’ll tell you about it next week

The first order of business was to find out who Zookeeper’s teachers would be. Because it’s written into his IEP, we were able to find out which teachers Zookeeper would have a week before anyone else. There was a service day, where volunteers sign up to come get the school/teachers ready for the year, on Saturday, August 27th. I signed the four of us up in the hope that we would know who the teachers were by then and meet them ahead of the swarming crowds that gather at the official Meet and Greet.

We did. So, while BamBam and I went to his teacher’s classroom to help, Sparky and Zookeeper went to his teacher’s classroom. I didn’t tell the boys that these were their teachers until after because I didn’t want them to go tell their friends, but it also turned out to be a good idea because there was no pressure on them. BamBam was hoping for the teacher every second grader in the school was hoping for, the equivalent of my friend Lora, but he didn’t get her. I was really worried about that, but meeting his teacher helped me see that this teacher might be even better for him. Which is also the equivalent of Lora because she would absolutely be the best teacher ever for my boys. Meeting her first helped to soften the blow when I told him he would be in her class instead.

I didn’t spend much time with Zookeeper’s teacher that day, but he and Sparky really liked her a lot. I didn’t make the split on purpose, but I now realize it was better for me to go to BamBam’s class because I think the room would have been emotionally charged had I been the one with Zookeeper.

So, Zookeeper meeting his teacher DONE!

Next was my meeting with Zookeeper’s teacher, special education teacher, and principal. We set that meeting for Wednesday, August 31st. The principal told me in advance that his former special ed teacher, the one we loved, will be his special ed teacher again. I told Zookeeper and his response was, “Good.” Sounds anticlimactic, but it was said with enthusiasm.

I got an assortment of pastries to bring in to show how much I appreciated them taking the time to meet with me. We had a very productive meeting, going over all the accommodations and how they will work. The principal even mentioned that Zookeeper had trouble with kids while waiting in line to go into class first thing in the morning. There’s no supervision at that time, except for the safety patrol walking around the building, and some of the kids are out there a long time before the bell rings. They get restless.

The special education teacher suggested that Zookeeper go through the office in the mornings, show them a pass she made for him, and go straight up to his classroom. There he will pick up a schedule for the day, compare it to the regular schedule to see if there’s anything different, then either help teachers with tasks or read quietly until it’s time to bring the class in.

They even suggested he start this the first day of school. Because once Zookeeper starts a routine, even if it’s one he doesn’t like, there is no getting him to change it. He is definitely a stick-with-the-devil-you-know kind of kid.

So, meeting with teacher and special ed teacher DONE!

Earlier in the week, I got an email from the choir I’m in about the start of the new season on September 3rd. The choir is in its seventh year, so the email listed the goals and accomplishments for the previous years and for the one ahead. The new goal is to establish a small, auditioned sub-choir.

That’s right in my wheelhouse! Given, that wheelhouse has 30 years of cobwebs on it, but still.

I signed up for the 7:40pm audition on September 1st, thinking that it would be soon enough that I wouldn’t chicken out, but after the school meetings so I would be relieved and able to relax.

Turns out, not so much with the relaxed. Because, once I’d finished the meetings and was satisfied we had done everything we could until school starts, I realized how totally freaked out I was about the audition. I had nightmares on Wednesday night and slept even less than I had the night before.

The email didn’t say anything about what the audition entailed. Neither did the sign-up sheet. I could have postponed my audition until after the first rehearsal, where I was sure there would be more information (there was), but I was afraid I would chicken out all together if I didn’t do it on September 1st. I had convinced myself that I could not ask anyone and, once I decide something like that, well, let’s just say Zookeeper’s rigidity apple didn’t have very far to fall.

I started trying to remember what was involved in high school and, for some reason, all I could think of was harmonic and melodic minor scales. Turns out the audition involved most of the all-state choir audition parts except for the scales.

Image of a large woman belting out a song.The director had me warm up a little, then she told me what the four parts of the audition would be: more warm up to check out my range, call and response (what I’m calling it because she plays notes on the piano and I sing them back to her),sight singing, and a PREPARED PIECE. Why couldn’t the prepared piece be what I remembered from high school?

I crapped out on the range. My voice just stopped coming out. I used to be a mezzo soprano, but now I’m close to a contralto. Very strange. She said it’s because I haven’t sung for a while and it’ll take more time for it to come back.

The call and response went well. I think she said I got all five.

The sight singing was disastrous. I started off okay, but then missed a couple of intervals and it went downhill from there. I commented on how flat I was and she said yes, but that I’d ended on the right note in reference to the piece. Meaning I was in the general vicinity of the right note, I guess.

Then there was the prepared piece and the fact that I didn’t have one. She said I could sing something from our last show or Amazing Grace or Happy Birthday or Do Re Mi…

I still have a bit of a chip on my shoulder about Do Re Me from our last concert, so I picked that one without pausing to give it thought. I should have picked Happy Birthday. She asked what general key I wanted, but I didn’t know, so she just chose one and I took off singing. By about Mi I realized it was too high for me. I kept going, but it felt like a disaster.

I was so nervous that I babbled about god knows what all the way through the audition. It was an embarrassment to the memory of the singer I used to be. The director was very kind and patient and said I did a great job. I guess we’ll see. The last of the auditions are on September 20th and the first rehearsal is the 26th, so I’ll know soon.

Either way, I’m hoping I can relax now and get some sleep.

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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.

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.

 

 

 

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Cautious Optimism

Posted by on May 2, 2016 in Anxiety, Autism | 1 comment

The school responded to my email quickly and we had a meeting on Wednesday morning before school. I think it went pretty well. The district autism support specialist was there and I liked what she had to say.

The principal wanted to clarify whether the locking out incident happened during the drill or not. Since there are lots of adults walking around checking to make sure things go well during the drill, I agreed that it probably happened at a different time and Zoo Keeper just put the two big events together in his mind because they both happened that day. Then the OT and teacher tried to take us off on a tangent about which doors are locked and other technical stuff, but the principal nipped that in the bud by saying that this wasn’t about proving if these individual things happened to Zoo Keeper or even whether they were intentional, but about how Zoo Keeper perceives them and our goal is to help him to feel safe and cared about at school. I knew she had asked about the timing of the door locking because that would be a whole other problem for her if it did happen during the drill, but I was still relieved when she voiced that we were focusing on helping Zoo Keeper rather than individual incidents.

Chalkboard style progress bar that says HOPE LOADING.

Chalkboard style progress bar that says HOPE LOADING.

They agreed right away to do a functional behavior analysis (FBA)  and a behavioral intervention plan (BIP).  The FBA is where someone observes the kid, taking data on said kid’s behavior and the things that happen before (antecedent) and after (consequence), and then looks for patterns. The BIP is the plan they make based on that data from the FBA to change the behavior. These are usually used when there’s a behavior problem, but here it will be to figure out what things are causing Zoo Keeper so much stress and anger and anxiety, so we can figure out what to do about them to help.

We asked for the FBA and BIP to be done by an expert not employed by the district. The principal wouldn’t commit to that because someone at higher level has to approve it. That person couldn’t make the meeting because it was such short notice, but the principal let us know she had sent the request later that day. The autism specialist seemed to think it wouldn’t be a problem.

Next we agreed that the autism specialist will meet with Zoo Keeper’s OT and psychotherapist to get ideas on strategies that work with Zoo Keeper, in terms of self-soothing and emotional regulation, so they can be consistent with them at school. We requested that at the last meeting, but the special education teacher pushed it off as the para educator’s responsibility and never did anything about it.

I sent an email to introduce the therapists to the autism support specialist (and the principal because she wanted to know how to help Zoo Keeper, too, which makes me happy). I heard back that the specialist had already contacted the therapists. There is going to be a conference call next week with the psychotherapist. I’m not sure yet if the OT will be on that call as well or if the specialist will travel to the OT’s office to discuss Zoo Keeper because OT is much more hands on.

We discussed some of the things Zoo Keeper has told us about how he feels. Like he does not want to change classrooms, he just wants the school to be better. And he feels like none of the staff at the school care about him. Everyone at the meeting agreed to check in with him and say hi to him in the halls and stuff to let him know they care.

Zoo Keeper told Sparky recently that his teacher from second grade, Ms. J, is his favorite teacher. The school librarian retired last year and Ms. J took over as librarian. The principal arranged for him to hang out in the library for 10 minutes or so right before school starts and he’s very excited about that.

Toward the end of the meeting, the advocate passed around notes from the previous meeting with questions on how the action items are going. Some of the questions had been answered that day, but a few had not. Most of those left unanswered are for the special education teacher. Questions like: Has he been added to the third grade social skills group yet? Have you tried the video-modeling program you suggested might help? When will he have the assistive technology assessment?

Unsurprisingly, I’ve heard nothing about these issues yet. I will draft an email to night to ask the questions specifically to her with everyone else copied. First I have to email the advocate to make sure she actually did hand out the notes. ‘Cause I’ll be pretty embarrassed if I ask and no one knows what I’m talking about.

Woman standing, facing a beach, with a checkered umbrella unfolded over her shoulder and her hand out to the side checking for rain.

Woman standing, facing a beach, with a checkered umbrella unfolded over her shoulder and her hand out to the side checking for rain.

The principal told us that she checked in with Zoo Keeper Wednesday after the meeting and specifically told him she cares about him. He had his first morning with Ms. J on Friday and that seemed to go well. On Friday afternoon, though, he was angry with the school again. This time because the kids are not allowed to have toy weapons, specifically paper ninja stars, at school. Unfortunately for him, I am completely on board with this rule. Sparky and I tried, unsuccessfully to explain the reason for the rule to Zoo Keeper, but he wasn’t buying it. We asked what he would do with them and this is what followed:

ZK: I just want to have them.

M&S: So you’ll just walk around and look at them?

ZK: Yeah. And practice throwing them and stuff.

M&S: What will you throw them at?

ZK: Nothing. Walls and stuff.

M&S: People?

ZK: No. I would never throw them at people.

M&S: We get that, but what about other kids. What if {current bully} had some ninja stars? What do you think he would do with them? Do you think he would throw them at people?

ZK: Okay, but why can’t we even hold our fingers like a gun?

M&S: How would you feel if someone pointed a pretend gun at you? Would that hurt your feelings? What if it was {current bully} pretending to fire his finger gun at you?

ZK: Okay, okay. Fair point. Can we stop talking about this now?

So, Zoo Keeper remains angry as ever with the school. I think he’s earned that and then some. It will take the school a while to implement all the measures we discussed and it will take even longer for Zoo Keeper to process his anger and trust the school to do the right thing. Much, much longer.

I, on the other hand, am now cautiously optimistic.

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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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