Flippin hills

I'm listening to Frozen 2. On my own. "The Next Right Thing," sung by my celebrity crush Kristen Bell, fits my mood. And the next song, "Into the Unknown," is also apropos.

Yesterday morning we made a family goal: Make asking for breaks during the day a priority. My husband and I want to reward listening to our bodies and meeting our needs in a healthy way. It's a helpful reminder for us as a collective, but particularly for C as he was returning to school following Friday's episode.

I gave myself breaks during the day. I was afraid of venturing too far, but I completed my errands and then gave myself the gift of a short run up the local ski slope, my favorite hill workout. I even smelled the apple blossoms! And I showered! And the result was that I felt hopeful as I arrived at the school to pick up the children.

C seemed to be in a good mood, but a few minutes after pickup he expressed some frustration. I asked for a break, but they wouldn't let me have it! Huh. I figured there was more to the story, as I know his teachers are good about letting him take breaks when he needs them. I asked him if he wanted to talk with his teacher briefly and perhaps we could sort it out; I know she loves and supports you, Buddy. Maybe it's a misunderstanding. He agreed, and trailed behind me back into the building.

We found his teacher, and I asked if she had five minutes to spare, as we wanted to figure out the asking-for-breaks situation. She seemed reluctant but ultimately agreed, and we sat down at a little table in the hallway. C was still hiding behind me, but not eloping; the fact that he came back into the building on his own volition to have a difficult conversation a huge step. But then the teacher sent him away; she asked him to wait in the classroom. This was the first red flag.

I'm still so confused by the conversation that followed. The teacher (who, by the way, has been fantastic this year) started out by defensively blurting: We always give him breaks when he needs them! I explained that I understood and said that I just wanted to get a better idea of what had transpired. She proceeded to repeat, like a broken record, that C didn't ask for a break because he needed one, he asked for a break because he wanted to avoid a difficult conversation. She wanted to talk with him about Friday's events and practice accountability and reparations, and she viewed his refusal as avoidance. I tried to explain that these conversations are incredibly difficult for him because of the shame piece, and that it's something we've been working on extensively in therapy.

Things devolved from there. She insisted he was being avoidant; I insisted she was missing the point of what we've been focusing on for the last two years; she refused to have a larger conversation without the principal and rest of the team present; the social worker showed up and - when I complained about lack of communication - chimed in that I was the only parent that got monthly meetings out of all the school's special education population. At this point I was crying in earnest, and I needed to gather C from the classroom (where I'm sure he felt punished) and B from the playground and get them both into the car so we could make it to equine therapy.

Yet again I cried on the playground and everyone saw, including other parents and my own children. C felt a lot of shame and started crying, too, and B was worried about me. I explained that I had a difficult conversation with another adult and that I tend to cry during difficult conversations, but I reassured them that everything was ok and I'd be happy to chat about it more later. B suggested that I talk to her therapist, as it might help me feel better. (Not sure what to think about that. On the one hand, I'm glad she recognizes that that's what therapy is for. On the other hand, I don't want her to feel responsible for my feelings.)

I cried on the whole drive to therapy. Thank goodness the kids were preoccupied with their Nintendo Switches. At the farm, C played another game on his Nintendo and B began her therapy, and I ended up having a few free moments to speak with our advocate privately as I walked up and down the gravel road that leads to the horse farm. What an incredibly helpful conversation. She was reassuring and affirming and had some good suggestions. We're going to hire a private behavioral analyst to review the school files and help us all get on the same page with a plan for C. The problem, my advocate pointed out, was that C experienced a significant event, and protocol wasn't followed. They did not appear to follow the IEP or attached Behavior Plan. I still haven't received anything written from the school; the principal, with whom I have a strained relationship, gave me a 15 minute recap on Friday of the event and that's the extent of my information. The teacher doesn't understand or believe in the Behavior Plan, apparently, and is addressing C in a punitive manner. And, btw, parents have a right to monthly meetings; just because I'm the only one who asked for them doesn't mean I shouldn't get them. My advocate reassured me: You're not crazy.

My husband and I only had a few minutes to debrief last night before we collapsed into sleep. I still hope I handled things correctly for C. I want him to both trust and respect his teachers, so I need to be consistent in the way I discuss things in front of him. I did share with him that I believed him when he said he had asked for and needed a break.

I was too exhausted to do anything last night, so I emailed the school this morning. I ran the email by our advocate and my husband before hitting send. I asked them to hold off discussing the event further with C until we had time to discuss a plan, and told them that we were hiring an independent BCBA to help with the process.

The school social worker reached out via email and asked to schedule a phone call for mid-morning. I didn't want to, but I agreed. I keep looking around, mentally, to see if someone else can handle this shit, but it appears I'm the only game in town. Dammit.

The conversation with the social worker went a lot better than the conversation with C's teacher yesterday. There was more listening and less defensiveness, although she did take umbrage at my accusation that communication between the school and home was poor.

Thank god we're hiring an expert, because I'm doing a terrible job of explaining things, what with my blubbering and emotions, which, again, are being weaponized against me.

The whole g-d point of the IEP and Behavior Plan is to deal with tough episodes, and apparently we needed this fire drill because no one knows what to do. Or they think they know what to do or how things should be done instead of what is written in the Plan. And yet again, I feel like that annoying parent that everyone hates, the overly sensitive, rude, pain in the butt "Karen" who believes her children who should get special treatment and not be held accountable for their actions, which is bullshit. Disabilities that are not readily visible to the outside world are bastards, because they're often not believed or not taken as seriously as a more self-evident condition. Especially something as new as sensory processing, or something still somewhat controversial like ADD. The fact that there are legitimate brain differences and professional opinions still doesn't make it easy.

Fuck me. I do not want to face the school or the teachers again; I don't want to see the other parents at pickup with a puffy face; I don't want to have to explain myself again and again; I don't want to have yet another conversation on next steps and plans; I don't want to participate in my telehealth psychiatry appointment in a few minutes. But guess what? I have to. So I'll keep showing up in all of my messiness. How I am perceived doesn't matter, as long as C is supported. I will keep hauling my sorry ass up that fucking hill of special education and mental health, because if I have one quality, it's endurance. Maybe I am wrong in my approach or beliefs about what C needs, but I feel I have to continue on this path until I'm shown another one.

- - - -

Just did my telehealth. I blubbered on about how I don't know how to trust myself and am worried I'm getting it all wrong. What if I mischaracterize everything in my retelling? What is the true reality? My psychiatrist told me with characteristic frankness that she wasn't sure she completely understood, but that it didn't matter, because I'm the only one who knows how I feel. And I don't need to care about what anyone else thinks right now. I'm in fight mode, and I need to be selfish in thinking only about myself and my family.

She's really good at her job.

- - - -

Just received a call from the elementary school; the principal provided more information on what transpired during the last two days. It was actually a somewhat helpful, non-confrontational conversation.

I need to send out more updates to C's therapist, etc, but my eyes are so swollen it's hard to stare at the computer screen any longer. Stick a fork in me, I'm done.