After a lot of dark days, a few lights appear.

First, some sobering reality.  The day program visit of two weeks ago that did not go particularly well, resulted in a rejection due to impulsive behavior and Julia’s use of an hour of the behavioral specialist’s time.  The rejection did not surprise me but it did scare me and I went into full catastrophizing mode.  What if this is every interview, every day spent visiting a new programs? 

The woman from a third program who visited Julia at Elliot House a few days before the unsuccessful visit to the second program was slightly more encouraging.  She could see why Elliot House was not right for Julia, pointing out that she did not see any sign of relationship building going on, something that Julia thrived on in the past.  For Julia, that is right on, (for a more independent and self-motivated person, Elliot House would be a very different experience). She told me that comparing Julia at Elliot House with how Julia might be at her program was an apples-to-oranges comparison, impossible for her to make. The woman offered a tour of her program for Julia and I and possibly a day visit to the program for Julia a few days after the tour.  I asked to do both when Julia finished her month at the arts camp she is attending hoping that some of the luster of the full internet days at Elliot House will be worn off.  Fingers and toes crossed.

It has occurred to me that for all the lip service by professionals acknowledging the regression and set backs that have happened since the covid shut downs and lack of programming, allowance for the behaviors stemming from those regressions is lacking.  Running through my brain is the idea that Julia from 2019 would have been more able to visit programs.  Anyway, I think that is so.  My hope is that I get a return of Julia’s 2019 sense of herself, but I can’t make that happen alone.  I need a program that will support her and foster the re-growth.  At the same time, that special program has to be willing to live through Julia’s transition to the program.  So far, I am not coming up with a program willing to do that.

Since last Monday, Julia has been attending the theater arts day program that PYD (Partners for Youth with Disabilities) is running.  She’s done other programs in the past that PYD has run and has always felt safe and cared for.  She has 4 weeks with PYD, each week a different topic.  Last week’s theme is theater/improv, this week is movement and drums.  I think Julia began slowly, not saying much and complaining a little bit.  At the end of her first day, a staff person came out to the car and said that Julia was expressing that she might not want to come back.  When I questioned her on the drive home, she did not agree, and when I wrote to the director, he got back to me the next morning even though he was on vacation.  He checked with the person covering for him and that person replied: 

“Hey D—, everything went well! Julia had a few instances of repetitive questions and inappropriate comments, but overall she was engaged and participated In the activities, I didn’t think she had a bad day. Most of the time she was like that during breaks/lunch; so I started checking in with her more during the breaks.”

Julia has gone six months (at Elliot House) without someone who is checking in with her during breaks!  

Later in the week, when she came out at the end of her day, she told me she did some coloring while some of the activities were going on.  Julia usually listens well while coloring.  This morning I was able to walk in with her —parking is slim to none in that part of Boston—and I was told that the rest of last week went very well, that Julia ended the week performing an improve by herself (she told me nothing about this) and that they were looking forward to this week with her. Again, this was the best news I’ve have in months.

I also walked in with her to ask if I could get their help in having her use The Ride, a paratransit service provides door-to-door, shared-ride public transportation to people who can’t use public transportation.  Julia is registered with them but there has to be the guarantee of someone at both ends of the ride.  I haven’t gotten that assurance from Elliot House.  D at PYD was happy to oblige.  I’d like her to use it coming home starting a few days this week. (And did I mention that D is just the best!)

I am cautiously hopeful.

Because she is spending days without electronics, I am giving her an hour a night on my iPad to do what she wants.  It appears, such moderation is working on many days. She is not complaining when I ask her to get off.  At least, not much complaining.  I do sense a shift in her, not every day, not every hour of every day.  She still holds plenty of anger but every so often, I see a bit of light shining through those cracks in her mostly angry veneer.  

Last weekend, Julia spent Friday to Sunday afternoon (47 hours!) at a respite house run by Charles River Center. The house is in Sharon which is a hefty drive on Friday afternoon with rush hour traffic both ways.  From all reports (and two pictures), Julia had a good time at the outing and in the house; however, when she got home, she became very angry and told me she never wanted to do that again.  And I would love to convince her to do it sometime in the late fall as I at least need the respite, perhaps much more than she does.  It was rather lovely and restful to go about an adult weekend without planning for, transporting and participating in activities that are built around Julia.  I fear at times that I sound a bit selfish wanting time away from Julia; however, after 17 years of intensive parenting with no prospect of change in the foreseeable future, I need that time no matter how it sounds to the rest of the world.

Julia was back at the arts camp today, which went well again, and is now working in the library. She gets to see her therapist after the library.  So far the day is going smoothly.  

Every day is a lesson in imposed moderation and they are tough.  Is moderation the last goal of the optimist? Is it the pot of gold at the end of the rainbow or am I growing into the Buddha of the internet? What ever it is, this moderation practice leaves me exhausted at the end of the day.