Between the Desert Places (#290)

To the list of autism parent synonyms, I found a new one to add today:

A solid stretch of clear blue sky spring days often herald a lot of smiles, a lot of learning, and a peaceful easy feeling boy, walking by the Hudson River and riding his bike. Today brought 78 degrees and all kinds of weather, from sunshine to a sudden darkening of the sky portending a thunderstorm (with lightning), with the sky going muggy and the air getting heavy with dust and moisture—with a change in the barometric pressure that has been known to set off a behavior squall in Charlie.

Charlie’s day was hardly an “off” one—he waited on the couch for his ABA therapist in the morning, went to the grocery store and a good walk with my parents, worked hard and talked a lot at a late afternoon verbal behavior session. But it was the time between all those activities that Charlie struggled through–flopping down and crying out on the kitchen floor, knocking the back of his head on the wall by the refrigerator when he asked for “spring rolls” at 3pm and heard me say “it’s kind of early for dinner.”

In other words, it was a day of transitional weather and day of Charlie having trouble with transitions.

I used to think that Charlie had minimal difficulty with transitions. As a toddler, he rarely protested when asked to stop playing and come to the table, or to go from being in his classroom to going to speech therapy. I liked to think, by keeping his daily diet of activities varied enough, we could “avoid the curse of the rewind button,” of Charlie always insisting on performing certain scripts of repetitive activities.

More and more in the past few months, Charlie has had behavior squall behaviors—head-banging–at transitional moments, just after coming into the house after being out in the car, or just after waking up, or just towards the end of a therapy session. A special picture schedule has helped a great deal for the past three days of being off from school for Spring Break. And today was the fourth; Charlie has had no more than a week off in the past, and I have to wonder if his internal clock was saying to him today, time to go back…….

That is, today was the day that (in previous years) has meant the beginning of the end of the break. Meant a transition from days at home with Gong Gong and Po Po to back to school. And, while Charlie loves his school, it is still a transition to go from break-mode to school-mode, and so was today punctuated with knockings of his head and a kind of strained, consternated look on Charlie’s face.

“It’s all about transitions,” Jim said to me this morning and reminded me how, back in St. Paul, Charlie had trouble at the beginning of walks: He would always have to walk to the right not the left on a walk. I had always thought of this as an example of OCD inflexibility (which it is) but realized today that, back then in Minnesota in 1999, just-diagnosed-with-autism Charlie needed to walk right towards the stone wall to negotiate the transition from our house to the street. To go from home-mode to walk-mode, Charlie needed a certain transition of walking right and did he howl (until we taught him he could handle it) as if in pain.

Or, in pain. I have begun to think, something physically hurts in Charlie’s head when he has to switch from different modes–of consciousness (waking to sleeping), of activity or location (being outside, coming inside). When he has to switch from his way of being and seeing the world to what might be to him a different reality.

Charlie’s “transitional mode” was also in the form of him feeling physically uncomfortably for much of the day and especially through the afternoon. His face was blandly glum and he was quiet in the car to and from the center where he does verbal behavior. He ran into the house to eat the cauliflower and noodles my mom had prepared, ate a little, threw his plate, lay on the couch, took a shower, had a big stomachache, watched Goodnight Moon and curled up beside my mom before going up to bed.

The forecast for tomorrow is rain and clouds and I’d best be more ready than I was today.

After all, you could say that a weatherman is someone who no one listens to and who doesn’t get it right anyways……. Might that be a metaphor for an autism parent, stumbling on the road to helping their child?

I’d say, autism parenting is a long journey of “whether.” (Man!)

And of “why?” and “how?” and “what?”, to negotiate all those desert spaces, those places inbetween.

4 Responses to “Between the Desert Places (#290)”
  1. zilari says:

    It’s uncanny to read about other people having such familiar difficulties.

    As a child, I remember VERY vividly being extremely fixated on certain videos. If my family put on a different film (other than one of my “special” ones) I would sit there wishing with all my might that the new movie was all a mistake, and would turn into my favorite any moment. When it didn’t, I would often lose interest or make a fuss (not in the manipulative sense but in the sense that it seemed like there was no continuity in the Universe). However, sometimes the new movies did end up being things that were also interesting. I do like learning and experiencing new things, but on my own timetable. The first time seeing, or playing, or doing anything I’ve never done before feels like trying to navigate a busy intersection on stilts during a windstorm. While blindfolded. So I have learned to gradually introduce new things, even things like books to read.

    It is also definitely something that gets better as one gets older. As a child I recall thinking that only very, very few possibilities existed in terms of What Could Happen. Over time I built up an increasingly larger database of possibilities, and it has gotten easier to accept that things may not always go as I expect. One way I’ve been able to manage this is to keep a fair number of special-routine activities that I can usually depend on to be the same, that I have near-complete control over. Like being able to come home in the afternoon and turn on my computer. Having my pad of post-it notes ready, in the same place, at work every morning. My pens lined up in rainbow-order. Having these little islands of familiarity helps maintain consistency in the midst of changes I have no influence over.

    I am not sure how to teach someone this skill, but I think that many adult autistics do develop (on their own) the ability to balance the new with the familiar. It is very, very stressful for me to have changes forced. Especially if they are unannounced. Giving some advance notice is definitely a good idea…people who know me have learned to do this and things are much more peaceful for it.

    Also, I never (and I’m sure Charlie doesn’t, ever) melted down at a transition due to any sort of sense of entitlement or anything like that (not that you’re saying that, but I do feel it is necessary to point out the very real and very important difference between genuine trouble with transitions and being “spoiled”)…it really is a matter of suddenly feeling as if one no longer has access to important parts of one’s brain. It is, as you say, a change in mode of consciousness.

  2. KC'sMommy says:

    Hi Kristina:)

    Meteorologist, yes exactly! That word should be added:)
    K.C. has a tough time transitioning too 😦
    I remember in your posts Charlie liked Hummus. Does he still ask for Hummus? I wish K.C. would eat something different but he is fixed with certain textures and it’s hard for him to to try anything new. How did you get Charlie to try different foods?

  3. Zilari, your comment came at just the right time today as Charlie woke up with the same knocking of head on the wall. I’ve been thinking he’s struggling with the notion of weekdays in which he doesn’t have school.

    KC’s mom, Charlie hasn’t been so interested in hummous in his lunch but if I’m eating some, he comes right over and wants it. We did a whole “new foods program” for Charlie—perhaps you might ask your home therapy consultant about this? I will also try to find some notes I made about this sort of program.

  4. squaregirl says:

    Parent: Mother, father, friend, teacher, helper, caregiver, advocate, protector, defender, student, educator, playmate, actor, chef, sometimes therapist, picker-upper-after, freedom fighter, peacemaker, doctor, detective, listener, nurse, teknopoinos, chauffeur, coach, companion, believer, seeker of justice, fan, parent.

    Kristina, I loved this! This is why I need to set aside time and put on my thinking cap when reding your posts…I love it when I get to check out your links to previous posts.

    And yes, “Meteorologist” (figuratively and literally)is quite an important one ! When I taught, and had eight of my friends at a time, I really saw how the weather makes a huge impact on children (ALL children).

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