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Friday, July 22, 2011

35. Rock and a Hard Place

I had been feeling confident about how I was managing Sean's autism. Even though it was always two steps ahead of me, I felt certain I'd catch up to it eventually. At the rate of Sean's improvement since his diagnosis, I just knew he would be nearly normal by the time he was a young adult. I was encouraged and impressed with his early intervention. We had time to make this happen.

Family, friends and people in general asked the same questions on a regular basis:

"What will life be like when Sean is older? Will he be able to live on his own?" 

I had no answer. How could I know? But I thought about it a lot. I thought surely he would be nearly normal one day. Excuse me, I mean, nearly "typical". Oh the lingo. Whatever.


Typ-i-cal:
adj.
  • Exhibiting the qualities, traits or characteristics that identify a kind, class, group or category.
    Sean was far from exhibiting typical behavior according to typical people's terms. He was not completely potty trained. He was five years old and still in a diaper which was the least of our worries. He was showing progress. Let me assure you he could sink a Cheerio with his pee stream in seconds flat. Focal points were necessary!

    One morning before the bus came to pick him up for training, I put a clean diaper on him and dressed him. He began to throw a fit, pull on his diaper and scream, "BIPER"(diaper). I checked the diaper and it was fine. He kept at me to change his diaper. I changed it, checked to make sure it was on properly and he screamed, "BIPER!!!!"again. He brought me another diaper. I changed it again. He was in a total meltdown. He was stuck. I was stuck. I stopped changing his diaper but he was freaking out. This behavior continued until I put him on the bus. He was a mess. I was devastated. I hadn't seen this behavior since his "Winnie Pooh" video tape incident. It was the first time I saw true desperation. I was used to the repetitive stimming behavior but I was not used to the obsessive-compulsive type  behavior. Was it OCD? OCD is a different beast altogether. I knew that no amount of behavior modification could change it. It would take medication. It would take Prozac.

    The diaper incident was a one time experience. These bouts with various vicious circles were enough to do me in but I followed along (two steps behind) trying desperately to break them. They were maddening. They were typical.

    2 comments:

    1. Oh my gosh, and I thought I had it bad. I usually could stop and redirect unless it was the low point of Wesley's Bipolar cycle. He's beginning to recognize his body/mind, and tell me when his mood starts to change. He'll say, "I'm beginning to feel angry." So, we know there will be 10 days ahead that are very difficult, and we can PLAN. I can't imagine the total chaos you are STILL living in!!! Prayers, hugs, and love!

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    2. Carolyn, Your struggles are as hard, I'm sure! I am so glad Wesley is recognizing when his moods are coming. I imagine that opens up a whole new set of solutions - not fixes, but more ways to be creative with his behavior management. My household is doing alright at the moment. I have a new calm approach to Sean's anger. It is the hardest thing I've ever had to do but I am staying calm so he can model after me. I missed that boat early on. We're in the stage of reconditioning. Bless you!

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