3rd day of semester

Winter break has been over for three day.  I mean, this is the third day, and I have this overwhelming feeling of wanting to be alone and quiet. This morning after Julia boarded the school van, I took a deep breath and bathed in the house silence.  I did not want to say a single word to anyone, and the usual morning pleasantries to the van driver (who is a very sweet man, by the way) were an incredible effort.  Peculiar thing is that Julia has had three very easy mornings following a relatively calm and easy winter break.  

The only challenge of the break, and indeed of the coming month (or so), is that she could not do her regular activities. There was no rowing last week and her zoom theater workshop was on break. The rowing class has now been cancelled for at least a week with the possibility of an extension.  Oh, how that email read like the first school closings in 2020!  The theater workshop which was rumored to go back to live meetings will stay on zoom, starting in February. Both these activities are important to our week, to her sanity.  I hate to lose them for any time at all. She will still have meetings with her therapist and her art mentor.  And for these, I am so grateful

It is another gray day which I do not mind in the slightest and, because I went food shopping yesterday, I have little reason to venture outside into the cold damp, although I acknowledge that a walk might do me some good.

I did not expect anything to change with the holidays or break.  I did not expect anything to change with the turning over of the calendar page. And yet, there have been changes—motions of moving backwards to extra precautions and zoom meetings. Back to Zoom choir rehearsals and church services, and very little chance of in-person HILR classes. When asked, I continue to say that I will sign neither Julia nor I up for any more zoom courses or groups.  Will I have to change that stance in the coming weeks?  Perhaps.

In 11 days, we will lose the Intensive Care Coordination (ICC) services from Riverside Community Care.  In some of the darkest days of last year, this team of mental health professionals and school staff was gathered and together helped us charter a way back to where Julia had been before Covid, before moving.  We may have even taken a few steps ahead. At least, that is how I feel right now. I am thankful for these people who came into our lives at that time and attribute a good deal of the good mental health that Julia is enjoying right now to her team.

ICC ends on Julia’s 21st birthday and I am more ready for this ending than I have been. A few months ago, when Julia had such a rough time beginning Community Connections, I thought that parting with ICC would be very hard.  I will miss everyone on the team, and the help they have provided.  I kinda’ hate to go it alone once again, although we do have support that will remain in our lives—Julia has a great relationship with her therapist, Michelle, and at Community Connections, she has bonded with the Social Worker, her Inclusion Facilitator and her Aide. She has another year at Community Connections—on her next birthday, she will transition once again to some adult program. 

Talking with our Family Counselor yesterday, I came to some sort of decision about what Julia needs next, what she needs for that next transition. So many adult programs rely on the agency of the individual to move forward. Julia does not have that forward thinking ability. At least, not yet. And I cannot wait for her to develop it in the abstract before she engages in and learns “adulting.” From what I can see, and I can be wrong, waiting for natural agency to develop, could result in Julia being eligible for adult programming that is little more than baby sitting.

Thinking about kids growing up and going to school—and I judge that Julia has probably middle school maturity—no one asks middle schoolers if they want to go to high school. Many, many students don’t have any choice of what subjects they take when they get to high school.  Perhaps one elective that first year, perhaps the choice between the regular or advance version of some curriculum.  And even with choices, so many times, it is the parents who make all those decisions.  

In the same manner, it is up to me to continue to figure out what comes next with only very small choices for Julia.  Currently, I’ve decided to work on cooking, a good independent skill.  If I asked Julia if she wanted to learn to cook in the abstract, she would say absolutely ‘no’!  But give her the choice of a PB&J sandwich in her lunch box or bringing a package of ramen noodles and a small container of veggies and tofu, and she’ll choose the ramen every time.  And learn to make it.

Job skills, volunteering, programming, eventual employment need to be learned the same way! I don’t quite know how, but I’m sure it needs to be the same way.

Julia did not have an easy morning at the program today, but not a completely awful one either.  Her social worker reported:

Julia seemed dysregulated during our morning meeting.  She scratched her hand over the course of several minutes while in the first morning group.  This did not cause any bleeding, but I could see some irritation / raised skin.

At first she was hesitant to leave the group to talk 1:1 with me.  Within a couple minutes she did join me.  She articulated that she was feeling “scratch-addicted” this morning.  I offered some alternative words to describe emotions and she ended up choosing “anxious” from the choices. She could not articulate any particular triggers or reasoning for scratching, but repeatedly came back to the phrasing of needing to / feeling addicted to scratching. 

Once we were 1:1 in my office, the strategies that worked well:

    • Mindfulness (attending to the colors and pattern on her dress in relation to the mountains of Japan) 
    • Sensory (picking a fidget – squishy ninja – to carry in her pocket for the day) 
    • Sensory (putting together a loose-leaf sachet of tea and then drinking the tea)
    • Encouragement to consider all that her body does for her, and to be kind in return to her body even when she is experiencing anxiety or an urge to scratch

She reflected that she does not need to scratch herself even when feeling tempted to do so, or experiencing any anxiety.  That many strategies may satiate that urge and are kinder to herself.

She was able to very easily transition to getting onto the JSC van with her aide and another peer/aide to head to Wegman’s. While at Wegmans, it was reported that she enjoyed looking at the Asian food section, and purchasing juice and bread.  She seemed to enjoy looking over the different selections.  She accessed the fidget on occasion.  And was able to engage in light conversations with a peer as well as her aide.

All’s well that ends well?  That report sounded so much smoother, so much less stressful than the reports of last Fall.  I can believe that life is getting easier for Julia.

I have heard many parents talk about needling and coaxing high school seniors of the typical variety to fill in college applications.  I’ve heard of some parents who do the filling in for their no-longer-children.  And many of those students go off without much protest to the college they get into without all that much agency.  Their parents hoping that it will all work out in the end.  And many times, it does.

I want to believe that even given the alternative journey that Julia is on, I can needle and coax and fill in applications and eventually, it will work on in the end. 

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