Facebook memories pop up: 3 years ago today, we were at Coogee Beach in Australia; 4 years ago we were cruising in Alaska; 5 years ago we were in the lovely town of Orta San Giulio in Italy and 6 years ago, we were with Julia’s China Sisters in Ohio. We are going to Ohio tomorrow and I hope for some fun. But today I gather my thoughts to write where Julia is these days and ask for help.
This morning I arrived at sudden clarity after months of confusion and muddle, and maybe a little hope that some of my greatest concerns could work themselves out. Nothing has worked out “by itself.” There are no answers this morning, but I can see where we are with Julia’s life, the little that is going well and all the rest.
This was excruciating to write; however, necessary. The four weeks of ESY (Extended School Year) have not gone well. Every week Julia has had some days of refusing to do the work of the day, threatening self-harm at school and having rough mornings or evenings at home. Nothing I have done at home in previous years is working. Before the school year and the new transition program begins, I need to work out some things that help Julia. She is NOT going to blend in and get adjusted by herself. She is NOT going to transition without effort. She is still on high alert and on the brink of meltdown every day. She is as hypervigilent and affected by trauma as she was 12 years ago.
What is abundantly clear is that I need help and guidance. I’ve needed it so many times and sometime I got it and sometimes I muddled through. I don’t think I can muddle through again. I sent this to past and future educators and Julia’s therapy team. I am looking for suggestions.
Julia’s Summer Profile:
Things Julia needs to work on and learn about although admittedly she is either not inclined to or vehemently refuses to spend time working on any of these:
-Ambition, including but not limited to, self-determination, willingness to be active, finding some joy in doing anything and learning how to want
Things that don’t work: work sheets, sitting around talking, planning something that she has not done before, setting timers, posted lists of activities, charts to check off with or without rewards, asking Julia what she wants to do, taking away her electronic devices, putting time limits on her use of the phone (the phone is never used for communication), zoom meetings.
Things she likes to do and will pick up by herself: watch YouTube videos, use her phone to find new apps, read manga, play dating games, learn more about male homosexual relationships, listen to K-pop and deep dive into various anime worlds filled with violence and sex. She is willing to talk at almost anyone who will listen to her about her interests.
Things I can ask/forced her to do: practice cello, draw, post some pictures on her blog, do an occasional DonnaLee page, extreme dot-to-dot, housework including vacuuming, dusting, putting away clothes or the dishes, follow simple directions for cooking (with my supervision), talk to her/our therapists, Michelle and Gail, draw with her (new) art mentor, Deb, go to PYD ATT theater workshop via zoom.
Things that are working: Julia’s relationship with her therapist, Michelle, and rowing practice. Julia had good relationships with her inclusion facilitator and her counselor at school, but those relationships are over. Julia has a good but somewhat resistant relationship with Miles, her cello teacher. She enjoyed unified sports at school during the spring semester. Previewing activities can work for Julia, especially if the activities are new; however, previewing can also make her more resistant to trying new things or doing regular activities.
Prior to arriving in Newton in the summer of 2019, I supplemented what schools provided. Julia had a lot of therapy of all kinds, including vision therapy and cognitive enhancement using visual imagery. Julia has had cello lessons and art lessons. During summers, I would set up daily work—reading with some kind of journaling, writing or drawing, math practice including working on time and money, memory practice using journaling of what she did during her days, work on concepts like before and after, and of course, drawing. We carried daily work when we travelled and, together with meditation, the daily work provided stability and, I think, a calm to help her to advance in thinking and understanding. Since the Covid shut down, Julia will not be convinced to do daily work. I don’t know if it is the result of all that has changed since 2019 or her finishing school.
Julia had a very hard transition to Newton, although clearly the school and services here are far superior to what we had back in Wisconsin. Covid shut down, which was the spring semester of Julia’s first year in Newton, did not go well for Julia no matter how many zoom classes and activities she attended. Julia attended school physically last school year although for months her classes were online. She limped through the year. Relationships with teachers and aids coaxed her to do some school work and arrive at the end of her schooling. I never got the feeling that she was happy about any of her work at school. She never wanted to do any school work at home.
I don’t think she learned anything in the last two years save how to do a few household tasks. I think she has been surviving day by day and we, teachers, therapists and I, have tried to keep her from melting down every single day. That’s it. She is always on the brink of a melt down, usually brought on by someone, including me, asking her to get off her phone or school laptop. Her “go to” response at school is to threaten self-harm whenever she is frustrated. Threatening self-harm at school gets her attention which eventually deescalates her extreme emotional response after she talks to a counselor or teacher. When I talk to her about these events, she tells me “she will fix it.” She wants to fix or be fixed, she does not want to work on or through her emotions, her responses, etc. She has been very clear about not wanting to talk about or work on her inability to self-regulate.
Socially she has lost what little ground she had. She has no one outside of our small family and school and healthcare providers that she talks to. Mentors via zoom, theraputic and through PYD, have been unsuccessful. Rarely does she spontaneously greet people we know and if people greet her, she usually needs a few prompts to respond.
She has no curiosity beyond internet trolling on her phone. She doesn’t really want to learn or do anything right now. She has no future plans, hopes or dreams. She can be coaxed to say she wants to live with friends or work at a “con” or make art; however, she doesn’t have any friends and she has only been to two cons and has no idea what working at one means.
Last summer, after some very hard times including using my credit card twice without permission, I took her iPad away from her. She had a phone but it was old and only good for calling or texting. I hoped that without internet stimulation she would become interested in doing old or new activities. For a very short time during the summer it worked but when school began she had access to a chrome book that allowed her to “sneak” onto the internet whenever she could.
I gave her a new phone during the winter to help her ease into post-covid life and hopefully, foster some connection with people that she knew from school or old Madison friends. This was a mistake. I made her agree to time limits that I put on the phone— generally on from 9 am to 9 pm with 2-hour limits on any app. She is still very angry about the limits and uses her anger over the limits to “ramp up” and melt down frequently. She has gathered many, many apps. Most of the time she finds and installs apps and never looks at them. Sometimes she reads on apps, stories about romance and sexual exploits of boys and men. Julia wants to be trolling the internet on her phone all the time. If I took all limits off her phone and did not ask anything of her, she would do it without stop for as long as she could stay awake.