I started this blog almost nine years ago with a list of things I planned to accomplish by my next birthday. I had gotten the idea – of the list, not the blog – from a book I’d read about a woman who took over another woman’s list of big goals and it changed her life. The things on my list had nothing to do with the every day activities of my life at the time and I think that was part of the point. My life was changing in ways that, for the first time in my life, I had absolutely no control over.

Before I had kids, my life sometimes felt out of my control, but it never really was. Of course I had moments when someone else exerted control over me or their choices affected me in ways that made me feel powerless, but the way I moved on from those moments was always up to me. I got to choose the general direction of my life. When I didn’t like jobs or boyfriends or friends or living situations I could choose to leave them behind. I was even lucky enough to be able to choose to stay home with my first child. I had been consistently employed from the age of 16 to 37, but leaving that behind was still my choice. How I handled being a mom to our first baby and then to our second was still under my control.

But nine years ago I first heard the term pervasive developmental delay and my life was suddenly no longer under my control. I was standing in this room, back when it was a spare bedroom rather than my office, on the phone with Dr. G when the world dropped out from under me. I was suddenly propelled into a world of occupational therapy and speech therapy and decisions about evaluations and whose advice to take because nobody seemed certain about anything anymore. I was faced with choices I didn’t know how to make with repercussions I couldn’t fathom, let alone process and understand.

So, looking back, I’m not surprised that I made a list of goals that I could accomplish. It was my way of reconnecting with a familiar world where I had control over outcomes. I made a list of five goals and started a blog I named Destination 140, though it might have been called Desperation 140. I accomplished almost everything on the list by my deadline, too.

• I read 20+ books that I already owned.
• I learned how to knit and made a placemat and half a scarf. I haven’t knit a stitch since, but I think about picking it up again sometimes.
• I wrote a book with a beginning, middle, and end, though it is still unfinished nearly a decade later and I’m STILL working on a version of it almost a decade later.
• I ran a 5k with BC Maven’s help. God, I miss her. Cancer killed another good friend a few weeks ago, one day shy of her 34th birthday. BCM was 35. Fuck cancer.
• I lost 80 pounds from my peak pregnancy weight. I was supposed to lose 100, but decided that I got close enough to count.
• I fit into the purple dress…and started the climb back to my peak pregnancy weight where I currently sit.

None of those achievements changed my life, but this blog did. Writing this blog helped me sort out my feelings about autism. It helped me improve my writing in ways that still surprise me when I look back. It revealed things about myself that I didn’t know until they poured out on the page. It helped me connect to people, even my husband, in ways I’m not capable of in the moment. In person. I even had a friend tell me recently that she knew my blog before we met.

This blog helped me find my authentic voice.

Then the 2016 election happened and I was so appalled by the outcome and the subsequent attitudes of people I had considered friends that I stopped posting here. In truth, I stopped writing altogether. I still have trouble stomaching where we are as a country, as a society, really.

I think I would have eventually come back to this blog, though, had it not been for the school situation. I had blogged about the bullying situation Zoo Keeper experienced in the 2015-2016 school year, discussing the advocate a little bit, though not as much as I thought I had. I put a summary in the post Rock Bottom. In Climbing Out, I wrote:

“Our happy, smiley, silly boy had turned sulky, scowling, and snappish. And angry. His anger was always just below the surface, ready to pounce. His OTs, psychologist, and I all talked to him about figuring out what his body feels like while he’s getting angry so he can learn to do some self soothing before he starts screaming. Or growling. He maintains that it happens too fast to do anything about it, which I think means it’s still too close to the surface all the time.”

We hoped the 2016-2017 school year would be better, but it wasn’t. By the end of that school year, he was home with me much of the time and we pulled him out of public school in desperation after a particularly combative IEP meeting. We put him in a private school that takes special care with traumatized kids for the 2017-2018 school year. Though he liked the school and the teachers there, he refused to go most of the time due to PTSD from the public school situation. He spent most of the year at home with me. His brother also requested to be moved to this private school and by the end of the school year they were both home with me most of the time.

After winter break that year, Zoo Keeper refused to go to school for two solid weeks. He had daily panic attacks, sometimes lasting hours, and the only way I could talk him down was by discussing suing the school district. By the time I got him to go back to the school building, I was convinced that’s what we needed to do, so I went looking for a special education lawyer. Once the lawyer got involved, the school district decided to find an appropriate placement for Zoo Keeper to start in the fall.

I had signed both boys up for summer camps, but BamBam’s depression had already come to a point where he was missing lots of school, so I shouldn’t have been surprised that he refused to attend summer camp more than one day a week. Once again I had a kid at home with me almost all the time.

We had also gotten a dog that was supposed to have been trained as a sensory companion. As it turned out, that meant he needed me to meet his sensory needs. With our other dog and the boys home most of the time, it was like I suddenly had four preschoolers home with me. One of them likes to bark a lot.

Basically, I’ve been running on empty for a long time.

But fall of 2018 brought some relief to our family. The new placement for Zoo Keeper is going really well. He is almost back to the sweet, funny, happy kid he was before third grade happened. It’s wonderful to see him happy again. BamBam is there, too, and he likes it, though he’s not making friends as fast as he’d like. We had tried some depression and anxiety meds for him that didn’t work, so we had a genetic test done that verified those particular meds were not good for him. He’s been on a new one the test recommended for a couple of weeks now. Can’t tell if it’s working yet, but at least it hasn’t made him more depressed like the other two did.

There are still issues for both of them, but I think the dark days are behind us. For now, at least.

I was able to get away for two whole weeks by myself in October. My mom came to stay with Sparky and the boys – Thanks Mom!

I’ve found myself ready to get back to blogging. I’m ready for a new list. But, unlike the one that kicked off this blog, the new list isn’t about finding my way in a new normal. This one’s about reestablishing myself now that I have a little bit of time to focus. I guess it’s about reintroducing focus into my life. Hello, Focus, I’ve missed you.

http://mockingbirdjane.com

Where the previous list was about taking some control back, the new one is about focusing my energy to achieve my goals. I think I need a new blog for that. As this blog grew far beyond the list I made at its inception, I’m sure the new blog will grow beyond its list. I’m hoping to be more of a resource for families with special needs at the new blog, but I’m sure there will be plenty of introspection, too. I can’t seem to help myself in that area.

So, this will be my final post here on Life with the Quirky Boys. I hope you will join me in my new digs over at Mockingbird Jane. Please come subscribe – it’s kind of lonely over there right now. Plus, I wrote a children’s book that I’m about to publish (EEP!) and I want to tell you all about it.

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.

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.

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.

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.

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.

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.

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.