Monday, November 07, 2005

Monday Morning Reflections

I fell in love with the personality common in many children and adults who experience Down Syndrome more than 35 years ago because of our little neighbor girl. Over the years I have worked with many children and adults with Down Syndrome diagnoses. The frequent smiling and seeming to just go with the flow was common among those I worked with.
When Billy Ray came to us at 15 months old the only diagnosis was Down Syndrome and chronic ear infections. His personality was laid back and happy most of the time although he terrible twos set in quickly. He was content to do things with me around the house and go with me wherever we needed to go. Change in routine didn't bother him that much.
Now Billy Ray has a dual diagnosis of Down Syndrome and Autism plus a few other ones thrown in, bipolar, ADHD and medical ones we won't go into today. He is not nearly as "go with the flow". Change in routine can set him off in various ways ranging from "drop" (throwing himself on the floor in confusion or frustration) to full scale agitation (which might be aggression or throwing things including furniture). His constant noise, much of it just noise not verbalization and agitation is difficult to deal with for a Mom who loves quiet. The personsality I fell in love with all those years of working with persons experiencing Down Syndrome is still there but it doesn't come out as much. Our lives are full of routines and methods of communication that keep us fairly regimented.
My husband is visiting his sons in another state. Billy Ray doesn't like it when his stepfather goes away but he has handled it better this time than sometimes. When it happens on a weekend it is more difficult because he is already off schedule for weekends and we don't have support staff on Sundays.

After dealing with a clogged up tiolet which ran over onto the freshly mopped floor, our Sunday went fairly well. We didn't make it to church because of Billy Ray's need to stay close to the tiolet and dealing with the clogged tiolet. I anticipated an explosion or at least a "drop" at anytime but it didn't materialize.

I realized last night putting him in bed that we had a bit of the old Billy Ray while he experienced the single diagnosis of Down Syndrome yesterday. He was happy to work with me puttering around the house getting some things I have wanted to do for a while done. Other times he watched a movie in the living room where I could see him while dejunking the kitchen counters something I had longed to do for weeks. We made diabetic cookies together and he loved taking them off the cookie sheet with a spatula. We went out for an early dinner together despite the snow and had a pleasant time.

It was a nice time just being with my son this weekend. It reminded me of the time we spent together following his Dad's death when it was just us.

Until tomorrow,
Peggy Lou

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