Thursday, 05 November 2009

• The Ups and Downs

  

  Time goes by.  Summer has turned to fall.  My children grow.

  Alex goes through changes.  No two days being the same; no two consecutive days holding hope for the immediate future.

  We’ve been going through meds.  Rather, going through his latest of Depakote.  Up, down and up again.  Grogginess, breakthroughs, verbalization and sleepless nights of spike and wave activities.  We can’t tell if he’s coming or going…and neither can he.

  The erratic nature of Landau-Kleffner Syndrome is apparently one of its hallmarks.  It’s unnerving, exhausting, enough to make you stop breathing and stand on guard, at the constant post of fight vs. flight.  It takes the hope you gain from a day of clear and concise communication, sentences, actions, sleep and great behaviors and shreds them. The surrender to the heaviness of the struggle, nonsensical ramblings, hitting, kicking, biting, eyes marbling as pin balls bouncing around the edges of his mind, the constancy of guarding your children, yourself, him…it breaks down any last bit of hope that remains from the shred.

  Sigh. 
  

  We’ve heard the words “mastered” used to describe Alex and some of his IEP Goals.  MASTERED.  We’ve heard the words regression, usually after a collaboration between sleeplessness nights – which was expected.

  Teachers have been taken aback by behaviors that were once thought to be confined to our home.  “Spitting on peers” (must have been raspberries), an inability to keep his hands to himself, getting kicked out of PE.  These same teachers allowed the shine to glisten to the edge of their eyes while they told us how Alex’s personality has flourished; how it has burst from him in rays they thought not possible as of last year.

  It would seem, even with answers, Alex is still a conundrum.

  

  
  

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