Monday, January 11, 2010

Random Happenings

Robin's Wedding

My niece got married this weekend.  What a joy.  She's sweet, he's a good guy, and now she has a different last name.  Changing her name made it "real" to me.  I got onto Facebook and she popped up not as the girl I knew but as the married woman she now is.  Sniff... sniff...

The wedding was, of course, beautiful.  The church was, of course, beautiful.  The bride was, of course, beautiful.  The groom was, of course, handsome if somewhat pale.  What made it even more special was that her father (my brother-in-law) performed part of the ceremony, as he is a minister (and it was his church).  He beamed his way down the aisle and lovingly (and with humor) married his daughter to the groom.  My kids even paid attention.

I should qualify that last statement:  Tom's focus was to read until he had to pay attention and then to get back to his book, all to mark time until he could play his DS at the reception.  And that's what he did.  He played his DS.  The whole time.  Except when he got in line to get a plateful of cookies.  Even while he ate his plateful of cookies.  Nobody bothered him; he bothered nobody.  He didn't visit with relatives or make friends with the kids his age, and we didn't ask him to.  He just played his DS.  By the end, his stress level was elevated, but he got in the car (playing his DS), sat in the hotel room as we all changed (playing his DS), set it down for a trip into Toys R Us to part with his Christmas money, and picked it back up again to drive to the restaurant for a family dinner, where he played his DS.  His first comment on the evening?  "Yeah, it was so loud in there that no one could hear my DS, and I had it the whole way up."  His second comment:  "I liked the french fries, but I didn't like the chicken."  Then he played his DS all the way back to the hotel.  Do I wish things were different? Do I wish that such gatherings were fun for him?  Do I wish that I had used it as a learning experience for him?  Sure.  I could wish...  But he "got through" a social event without a significant meltdown, and for now, that's enough.

Pride and Prejudice

I found a great website, http://librivox.org/ , which offers free downloads of audio books for works in the public domain.  I'm loving this website.  I downloaded A Christmas Carol first, as I was in the mood for it, and listened to it as I did some projects around the house.  Then I listened to Pride and Prejudice, which is my all-time favorite book -- Elizabeth and Darcy's courtship gets me every time -- as I cleaned the basement, did laundry, and prepped for my Girl Scout meeting.  Here's where I had a little trouble:  Most of the time, the readers, who are volunteers, set a good tone for listening and simply disappear into the background as the story engages me.  However, every once in a while, someone jarring comes along, and instead of listening to the story, I find myself listening to the reader and, more often than not, being annoyed.  I can live with it since it's free and since readers in this book change off every couple of chapters.  So I listened all the way to New Jersey and home again for Robin's wedding.

Checking Out

My friend has posted several entries on her blog.  Some I cried over, but I haven't been able to leave a comment, I think in part because I don't have anything to say except, "I keep on lifting you up in prayer, almost hourly," and in part because I had to "check out" for a couple of days in order to get to/through this wedding.  I feel so constantly sorrowful for her and her sweet child, but I needed to put it on hold to be happy for my niece and new nephew.  I don't feel any less.  I've just wrapped it up and pushed it to the side.  It's there, and I know it's there; I have to go get it and open it up and deal with it.

The Car and the Tree

I've been thinking quite a bit about a time in my life when my children's needs were so great and outside help so unforthcoming that I felt more than overwhelmed.  It was a long time ago, relatively speaking, (Tom was diagnosed with AS 9+ years ago.) but I can recall feeling so tired, all the time, and so very overwhelmed.  I was doing the best I could to get Tom's needs met.  I went to CNMC, where Dr. Gilotty pretty much saved our family.  (I still hear her voice in my ear from time to time reminding me to "speak low and slow" when dealing with him or explaining that this is not willful defiance and noncompliance but rather is a neurological, brain-based, constitutional disorder.)  I took Tom to private OT and PT and social skills groups and adaptive swimming lessons.  I did Therapeutic Listening and the Wilbarger Brushing Protocal at home.  And I bought Boardmaker and picture scheduled the heck out of every action and event.  But I couldn't get our school team to program appropriately for him.  I couldn't get them to not blame him for his diagnosis.  His principal once said to me (at his post-suspension re-admission meeting), "You have to admit, Ms. Griest, that we've given 110%.  We've done everything we can."  I remember thinking at the time that 110% of the wrong thing is 0% of the right.  I despaired of the school team's ever overcoming their ignorance, and that the pattern of problems not being resolved year after year would continue.

I remember once while driving them to the allergist after picking Tom up from school to get him his (weekly) allergy shots -- for which I had prepared the Boardmaker card and the toy bag and the snack bag and the car tv/vcr -- that I just wanted to run the car into a tree.  I didn't want to kill myself, and I certainly didn't want to hurt Tom and Nat.  I just wanted to be taken to the hospital and allowed to sleep while someone else took good care of my kids.  Just a little rest from the constant demands and the hopelessness of the school situation.  Needless to say, I didn't do that.  I pulled into the parking lot, allowed my kids to finish watching the episode of Scooby Doo (because one cannot possibly leave in the middle of an episode), and struggled through the parking lot with my loaded toy bag and two kids to sit in the crowded waiting room until we were called back for shots, only to return to the crowded waiting room to pass our mandatory 20 minutes before checking the injection sites and pronouncing ourselves good to go back to the car, in which we returned home to enjoy our highly structured evening.  I have since learned the proper term for not running my car into a tree to get a little rest.  I can hear my friend saying it now: "Suck it up, Buttercup."  Sometimes sucking it up hurts.  But it moves you on to the next thing.

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