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The First Day

  • Posted on September 3, 2014 at 10:00 AM

The boys are at school for their first full day of school today. This is the first full day of the new school year. It’s the start of new things:

  • Learning new things in new classes,
  • Attending class with new students and (for Willy, at least) new teachers,
  • Meeting (or not) new expectations, and
  • Aligning to new routines and new patterns.

Even though some of all this newness is actually the same as last year, it’s still new because there has been such a significant break between the end of last year and the beginning of this year. Furthermore, all three boys have made substantial growth in non-academic areas over the course of the summer, so they’re like new people heading into what may be an old environment.

After the rush of activity to buy new materials, new shoes, and new clothes for the start of this school year, I’m ready for the boys to go to school. I’m ready for the quiet and the relative inactivity. I’m ready to get back to my studies and get back to work. I’m ready to adjust that I may get back into the “normal” pattern of things. Whether it’s normal to human nature or not, the school year makes up the bulk of our yearly time, so it’s the “normal” we experience the most.

As ready as I am for the boys to be back in school, I still feel the loss of the moment and I still feel an overwhelming wave of anxiety for my children. I close my eyes and bring up all the words I have about all my children and fill the darkness of my pictureless minds with all their wonderful attributes. I silently pray, “Let this be a good day. Let the people of their new world see them for the wonderful people they are and appreciate them for all of who they are.” I hold each child in my mind for a moment. Then, I get back to work. I have a full day of work and studying to fit into this brief period away from my children. I have adjustments of my own to make to this new pattern of things. It’s a “first day” for me and for Mark, too.

Christmas: A Series of Adjustments

  • Posted on December 27, 2010 at 3:19 PM

When our boys were diagnosed with autism, Mark and I braced ourselves for a lot of adjustments.  We needed to adjust the ways we addressed our boys’ behavioral problems.  We needed to adjust the ways we thought about these behaviors (challenges vs. problems, for example).  We needed to adjust the ways we thought about their futures and our future.  And we needed to adjust to our present, even as it changed on a daily basis or as it seemed not to change.

Holidays have required different adjustments.  In a way, our ability to cope with these recurring events has been less than I’d like.  Part of it is that they only occur once a year, so we don’t get as much practice as we get with some of the other things.  Part of it is that much of our lives revolve around coping.  Holidays require extra energy and extra effort.  Often, I just don’t have the “extra” to spare.  And part of it is that our boys are thrown off by these events, just as we are, perhaps more than we are, and so the cues I usually rely on get skewed.

This Christmas was no different, and yet it was different.  This Christmas we adjusted a little closer to what our boys needed.  But, we still haven’t figured out how to get that merry Christmas spirit pulsing through our lives.

On top of the usual festive difficulties, Ben was sick and so he wasn’t quite up to joining in the reindeer games…or much of anything else.

One adjustment we made somewhat successfully this year was the lack of a Christmas feast.  My boys don’t feast.  We’ve tried adding special things—their usual fare—just for them, but they still won’t be lured to the table.  Willy will sit down and try one or two things, just like he will for a regular meal, but he won’t feast.  It makes for a somber, disappointing mood, so I just didn’t do it.  Sure, we baked a ham—yummy stuff.  But, we didn’t make a bunch of fixings or make a big deal out of it.

Of course, when we went down to Illinois to celebrate Christmas with the extended family, Alex went on something of a hunger strike.  (Ben stayed at home with my mom—too sick to go.)  Alex didn’t eat dinner.  He ate (I think) his cold grilled cheese sandwich (from dinner) for breakfast, but refused all the breakfast foods.  And, during the Christmas party (lunch), he only ate sugar cookies.  It’s not that he wasn’t hungry, but he was so out of sorts he wasn’t willing to try much.  Even things he liked in other settings.  And we really don’t know how to make that better for him.

Another adjustment we made was not to make the big rush to Christmas morning.  The anticipation of morning presents affects Willy, but only when the morning comes.  None of our kids wake up early in anticipation.  None of them want to be woken up just because one of their brothers is up and ready for presents (almost always Willy).  And this year, Ben didn’t even want to open his presents.

So, it feels like Christmas is lacking something in our house.  Mark and I lack the energy to make a big deal out of it.  Our boys lack the interest to make a big deal out of it.  And so, while Christmas was held, Christmas was not celebrated by my family.  And, once again—like holiday after holiday, year after year before—it feels like something was missing.  And we still don’t know how to adjust to fill in the missing pieces.