On Lights and Shadows

June 20, 2014
There are hours that leave shadows lasting for days. Only for two hours between 10PM and midnight, Robert was insisting on washing and then on finding (after I had hidden it.) dirty bed sheet. He was determined. He was obsessed. He was anxious. Very anxious. He kept checking the same closets, drawers, cabinets many times. He asked over and over. We both, Jan and I, tried to be as calm and soothing as possible, despite noticing how distraught Robert was. Only two hours, but the shadow spread over a few days. Even after finding a sheet and washing it, the following morning, Robert was more anxious than he usually is. I kept worrying about Robert’s obsessive need to keep everything the same way. I kept asking myself what other changes would make Robert so anxious. And of course, I kept questioning my reaction. Wouldn’t it be better to let Robert do laundry that same night. It wouldn’t last as long. He would calm down knowing that the order of the Universe had been restored.
In this shadow of cascading worries, many bright events seem dim. They remain unnoticed or are ignored as lacking any positive value.
Still, there are days of calm happiness. Days that shows steady growth. Days that expand Robert’s universe without causing any distress, but to the contrary, offering a new kind of freedom.

When I write this blog, I tend to use more words to describe the ways we stumbled, tripped, or were blocked than to report on those times when we moved smoothly forward.
Of course, when I encountered a problem I also think about two things: how it would affect Robert’s future and what can be done to fix it.
For instance, after the event with a bed sheet, I looked differently at Robert’s insistence on using always the same towel. I thought about ways to change it without causing too much protests. At this point I persuaded Robert to keep two towels on “his” towel rack and use either one or the other. So the “shadow” is a way to anticipating and preventing future problems. Is not all bad and it shouldn’t be avoided.

Nonetheless, I should not skip recording small gains, specially since I didn’t expect them. From mature behavior during blood test or X-ray, to helping during house cleaning, to uttering longer sentences (well, still prompted.), and to…tolerating two towels on “his” towel rack.

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3 Comments

  1. Michael

     /  June 23, 2014

    Hi Maria, Michael McDermott. Roberts old teacher I just happened upon some old notes from my Norwood days and was reminded about your blog. I hope you all are well and I was so happy to be reminded of Robert’s many gifts through your stories. We had a lot of fun together. I miss his fried eggplant dish….so yummy.

    Reply
    • Michael, Thank you for writing. You became such a great teacher in this second year. But I was so mad for you for leaving. I know I gave you often hard time, but I both liked you and I in this last 6 months I considered you a great teacher, I just was mad that you left.
      Robert is not in Lifeworks. For now three times a day. He works very well, although he still sometimes has some issues.
      I felt like Mrs. Doliner and I were fighting for your teacher’s soul. And I appreciated so much your work on Language for Learning, as it really allowed Robert to understand the sentence structure. Your weekly trips, so well prepared were everything I had ever wished for Robert’s teacher to do. I hope your new students and their parents appreciate your attitudes and work as much as I did in that second year.

      Reply
  2. michael

     /  June 24, 2014

    I felt terrible that I never got to say goodbye to you guys. I really miss Robert. I learned quite a bit from working with you and Robert. Right now I am just doing Vocational Training so most of my work is done in the community or writing vocational assessments. I went back for training at ICI/ Umass Boston as part of the Transition Leadership Certification. So I feel much more empowered and supported with the colleagues I have made through this program. I also had a great mentor from the Nemasket Group in New Bedford who I have been able to work with fairly often.
    I now live in Magnolia which is part of Gloucester. The area is beautiful and it has proved to be a great place to raise my son.
    Be well,

    I will keep in touch

    Reply

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