Change is a 4 Letter Word

Transition.  If you aren't a part of the special needs community, this word may not mean much to you.  I must confess that it strikes fear in my heart.  Transition is a fancy word for "change".  You can understand that one, right?  No one likes change.  In special education, "transition" refers to the process of preparing your child for life after high school.  I've got several years before this change takes place, but our school district wisely pushes us to start thinking and planning for this well in advance.  So that even if we aren't emotionally prepared, we are financially prepared.  They do have to push me into thinking about it too.  I would rather think about road kill than imagine what life could be like for Shelby as an adult.  How can I picture her all grown up when developmentally she is 21 months old?  Also, I can't imagine anyone taking care of Shelby besides me, but yet I also can't imagine taking care of her for the rest of my life.  So, transition planning, while necessary, makes me sad.  And a transition planning survey came home with Shelby from school just last week to ruin my evening.  On this survey, I was asked to circle any of the following that Shelby still needs help with:  dressing, toileting, hygiene, cooking, laundry, making change, transportation, social relationships, completing job tasks, etc.  Every item on the list - circled.  I was asked to look at 12 pages of applied independent living skills and assess whether Shelby needs full assistance, limited assistance or is independent.  Things like:  pulls pants down at toilet, puts on or takes off socks and shoes, opens or closes fasteners such as zippers, buttons or snaps, blows own nose, brushes/ combs hair, brushes teeth, knows when to take medicine, puts items away in appropriate places, folds towels and washclothes, crosses street safely, and so on, and so on.  From a 12 page list, the only items I could mark for her as idependent skills were opening and closing the microwave and flushing the toilet.  Now, I know these things about Shelby.  I live with her day in and day out.  But there is something about being confronted with her limitations in black and white that sends my heart down into my shoes.  
On a run the other day (it's cheaper than therapy), I took the picture posted above.  I wasn't sure at the time why it struck me, but I think now I do.  This old set of shutters was obviously thrown away and ended up washed down the creek.  I imagine that at one time, they were both beautiful and functional.  Useful.  Needed even.  But now, the shutters are trash.  No one wants them.  Probably no one else would even take a picture of them.  But as I look at them, I wonder about the people in the world who view Shelby like this.  Those who see no purpose for her.  No place for her.  Those who wonder why God would even allow her to be born if He knew she would never be an independent, productive member of society.  And then...I see her hug a complete stranger.  An old man.  And I wonder how long it has been since a cute little girl paid attention to him and made him smile.  I hear her teacher gush about how much she loves Shelby and misses her when she's not there.  I laugh out loud at her silly attempts to play peek-a-bo and other simple games.  I feel her arms encircle me and know pure, innocent, unconditional love.  I know why God made her.  I know her purpose - for as long as God sees fit to let us have her.  Her call is probably more important than my own.  "And now these three remain:  faith, hope and love.  But the greatest of these is love."  1 Corinthians 13:13

Originally published on Jan 26, 2013