We love to use the shopping bags we’ve acquired from friends. This one is from cousin Stef in Sydney. We are thinking of all our Ausie cousins who are, for the moment, on lock down. Sending love to all of you!

Home and with not much to do for this weekend.  We expect a storm tomorrow and the governor advised all to stay home tomorrow.  I am still not used to hurricanes, their warnings and their fierce rains even though I grew up with them.  The first one I remember was Hurricane Donna in 1960.  I remember weather men breaking into my favorite tv shows  and my parents shushing us to listen.  And I remember picking up tree branches after it was all over. I remember tv news and pictures of places where homes and businesses were destroyed, and some cars floating down flooded streets.  I think it may have been when I realized that humans, particularly my parents, didn’t control everything.

Julia asked if she could take some time to draw this morning, and she is still at it 2 hours later.  This is the third day in a row that she has asked for the time. Cautiously, I wonder if going back to therapies that we’ve used before is giving her something.

Back a few months, I wondered out loud to our family therapist what kinds of therapies and interventions were appropriate, helpful and useful to Julia now.  Therapies and exercises always call for me to organize and facilitate.  When I wondered out loud, I felt tired and feeling like nothing that I had done for the past two years had done much good.   When I told her last week about things I was bringing back and things I was exploring, she reminded me that I had asked the question and evidently had come to an answer.  

So much of what I did for and with Julia over the years was about what she could accomplish in school.  Clearly, academic learning is over, at least for the time being, for her right now.  There are many skills, some very basic, that Julia needs to learn but I’ve questioned the value of social group therapy and the cognitive therapies that we had done in the past.  I let many practices and therapies go for the last two years—life during transition to Newton and then shutdown was too difficult.  Perhaps I should have fought harder to keep some of what we did in the past, but keeping her on zoom for school and then in school last year was where I spent energy.  I still don’t have the perfect vision of hindsight to determine if I was on the right track or allowed us to get completely off the rails.

Camp Echobridge provided a bit of breathing space.  Here was somewhere that Julia wanted to go every day.  I didn’t feel like I was battling the angry Julia every minute of every day. Or always trying to keep her from melting down.  Those two weeks at camp reminded me that it was possible for Julia to be happy and willing.  On some level, I had forgotten that. And I was perhaps too tuned into the reality of the present.

Julia is getting further and further from her age peers.  We had an appointment with her new MRC (MA Rehabilitation Commission) counselor on Thursday and Julia was unwilling, and possibility unable, to participate in the meeting in any meaningful way.  She could not/would not answer questions about her future, even the coming fall.  She flopped on the table and said she was tired, and continually talked about how much she wanted a Japanese (or Korean) boyfriend and wanted to learn to play guitar.  Both topics are part of her fantasy world. Her preference for nationality of boyfriends is about the anime/manga she is watching or reading not anything real.  There is a friendly Asian young man who is in her rowing group who frequently greets her, and Julia does not give him the time of day.

I’m off on a tangent when I wanted to just write about taking up of old therapies.

So, we went up to New Hampshire for a in person and zoom eye appointment with Dr. Debra Zelinsky in Chicago and Dr. Amy Pruzenski in Portsmouth.  The result was new therapeutic lenses for Julia to wear, plus some exercises:

1.  Dr. Zelinsky sent Julie 8-prism diopter yoked prism goggles with bases oriented at 3:00 and at 6:00 for Julie to use while drawing, eating, watching TV twice per day for about ten minutes in each position.

2. Julia will tap her thigh and count, then say something she would see in her bedroom, or where she is, three times.

Marilyn Holschuh, our Wisconsin attachment/trauma therapist, had introduced us to EFT or tapping as a technique to deal with difficult emotions.  We have been tapping every day for about a week, mostly about anxiety, stress and feeling unhappy.

Finally, I got in touch with Donalee Markus, who used to work with Julia using visual imagery exercises to strengthen brain weakness and create new neuro-pathways.  She is thinking about a plan for Julia and also suggested I research a procedure done by Dr. Eugene Lipov.

Dr. Lipov uses a Stellate Ganglion Block (SGB) with people who have experienced trauma to reset their fight or flight response. The website explains it better than I can.   (https://stellacenter.com/how-sgb-works).  I am investigating this with Julia’s medical caregivers.  It is not a cure for the effects of trauma but some relief that may allow for more conventional therapies to work better.  Julia has been taught, oh so many times, methods to reduce her escalation into meltdown.  She has a whole “tool box” of possibilities, and yet when she is aroused, the tools are impossible to utilize.  She escalates and she enjoys the rush of it—as if her brain is bathed in cortisol, she recognizes the emotions and indulges in them. Her reactions to negative events, be they very small or very large, is always extravagant.  If her reactions were able to be tuned down, perhaps she would have access to what can calm her down.  Perhaps over time, she would not seek to sustain her most difficult behaviors.  I get ahead of myself, but a Julia without trauma reactions would be an improvement, might make her life easier.

And Julia is still drawing.

Julia has alway been an onion, like Shrek the ogre was an onion—so many issues pilled one on top of the other—ASD, RAD, trauma and pretty severe cognitive challenges.  What to work on, in what sequence, towards what goals.  We did peel away at the RAD layer, and although not typical, Julia is attached to me and Cheshire and Justin and some others.  What if we could get to that trauma layer?  

2 thoughts on “onions

  1. Thank you, my dear friend. I guess on this life’s journey, I am always the one who is climbing some tree to see what is over the next hill. We are here to tell and today, I feel like I can muster a bit of patience. It was great seeing the picture of your “girls” all home together!

  2. Suzanne, you survived a year of lockdown and moving and reestablishing almost all connections. That, my friend, is a glowing success story. Both you and Julia are here to tell. Now or the coming months are soon enough to try and figure out a new track! No need to feel rushed into anything. You certainly have lots of ideas for what might be next, in time one or a few choices will become clear, kwim?!

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