Pending Good News: I received a voice mail from the Pegasus people to say that our daughter has a 95% chance of being in the Fall riding program. We will find out Thursday. At 12:30 today the Ability Beyond Disability staff and our DDS case manager meet at an ABD office to discuss the last thirty days since the CRS (Continuous Residential Supports) opened in their Ridgefield apartment on August 1, 2011. I am not sure what is expected of me here but I will bring everyone up to date on pending family events and the Pegasus possibility which would be scheduled on our daughter’s “individualized activity day” thereby not interfering with her DSO (Day Service Options) or vocational programming.
The Calendar Maven: Our daughter called me twice yesterday to remind me of this meeting today. I am so impressed by her newly acquired calendar facility which coalesced at last in her last year at Riverview. The ease with which she identifies whether it is a Wednesday or a Thursday is a welcome and recent development. For many years, starting as a very little girl, our daughter has struggled to organize time and activity. She clearly had a strong desire even as young as three or four years old to put plans into some predictable order but never could master the days of the week in a useful sequence. Consequently, when she eagerly awaited an event like going to theater, celebrating Christmas, seeing cousins, or traveling to Florida, the weeks leading up to the event were almost intolerable for her as she struggled to figure out “how many more days until we go to Florida” or “tomorrow does Rosa visit?” It was actually heartbreaking to see her scramble to regulate anticipation and excitement within this limbo of time in which she resided.
Temporal Reality: Teachers and specialists would tell me to set up a calendar, a chart with pictures, and go over it with her daily. I taped calendars with dogs and horses and funny faces in places where she sat but at home she eschewed all these attempts to track the days, though at school she was able to organize what class or subject followed lunch or recess. Today, to watch her facility with her days, while moving ever closer to organizing weeks, months and years, makes me so happy for her. I know that her history of anxiety was in no small measure due to the inability to make concrete the sequence of activities and plans that make up one’s life. Now she feels that connection to her place in time and the confidence and safety that awareness of temporal reality provides.
The Guarantee of Growth: I wondered if her growth would level off, plateau at some point. Now I know that in fact, she and all of us, keep growing and expanding our knowledge and capacity, if stimulated and rewarded by life. Our daughter has the gift of curiosity which sows the seeds for her continuous progress and the love of life that rewards us all for trying. Fingers crossed, she will remain lucky, stimulated, loved and loving.
©Jill Edelman, M.S.W., L.C.S.W. 2011