Monday, April 22, 2013

90 seconds with TS

The first time I truly understood what TS and the co morbid symptoms was like for a child was while watching a video given to educators on teaching to children with TS.  It can be ordered here 

The presenter has a son with TS and did an exercise for the educators to find out what it was like to live with TS.  I cried as  I watched.  I had no TRUE idea what my son was dealing with.  Yes I heard the words and it was explained to me.  Not until I attempted to do the following exercise did I start to have a light bulb go off in my head and said OMG what have I closed my eyes to.  How can I be the best advocate for my son if I didn't understand what he was going through.  This segment helps someone who needs an understanding for those who don't know TS,  Try the exercise as she does it.  When you are done think of Drew.
  Or as real as anyone who can have it for 90 seconds of the exercise.  You can go back to normal but a TS kids will keep on ticcing.

Something else people don't understand is the toll it takes on the body... Drew is in motion all the time  There is not a time when his body is not moving.  This includes when he sleeps.  Hard to sleep with constant movement.  I know teachers don't like it when I keep him home for a day or half a day to let him sleep.  His body needs time to recover when the episodes gets bad.  Some days are better than others.  some days are a nightmare.  He has injured himself with this tic but he strives to be normal.  He rockclimbs,tumbles, plays basketball, does regular kids stuff.

Watch the video, do the exercise and leave me a note as to how it went for you.  I would be interested to know..


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