Update from A Roller Coaster Ride

September 13, 2018

The last few weeks have been difficult.  Robert has been screaming for the reasons I could only guess and thus I couldn’t do much about it.  I am sure he is suffering. I do believe that some of his screaming is related to physical pain.  And I suspect that everything beginning with his stomach, through his lungs, possibly teeth to the spastic muscles of face and neck might be affected.

We have seen the gastroenterology specialist.  No relief, no explanation. Moreover, Robert’s belly still seems extended and hard to touch. We have seen the neurologist, done CT Scan of the brain. The scan didn’t show any changes except for a mucus retaining cyst behind one eye.  The ENT doctor  assured me that it shouldn’t cause any discomfort.  I try to believe him. Robert is seeing physical therapist for spastic muscles.  the therapy relaxes him but doesn’t prevent other episodes of screaming.  We have seen psychiatrist – believing that he might be very anxious.  Robert got a new proscription but the only result is extreme sleepiness in the morning.

To make matter more complicated, some of the episodes of very sharp screaming come out of the blue in the environment which has been always relaxing and has never produced such episodes before:  car ride with Tim or bathtub time.

Some episodes, however, come as a reaction to change in the environment and can be attributed to Robert’s OCD.  I believe that I can tell the difference based on the pitch and volume of the shouts, but nobody, I mean no physician,  is inclined to believe me. For them all is autism, all is OCD, all is my imagination.

Those are very difficult moments. I think I leave to another occasion the description  of those episodes, as this writing has drained me already.

So, on a brighter note I have to state that we are still learning together, although I make studying much easier for Robert.  Robert completes pages from the old workbook Write from the Start.  We practice pronunciation using very old Weber’s workbook.  We review some science information from the third grade level Real Math and we practice math skills with the help of Fifth Grade Singapore Math.  Each day, we read one chapter of an abridged children’s classic.  Currently it is Robinson Crusoe. Each day we solve one easy Web Sudoku. Robert continues to ride a horse once a week, swim once a week, play basketball or Frisbee for a few minutes each week (Not very fond yet, but going there). He continues helping with laundry and he does write, as needed,  a shopping list with names of items and stores you can purchase them from. Every few weeks, he either builds with his dad  wooden birdhouses or does a science projects. When weather permits, he rides his bike with dad or goes to Audubon Parks. When the weather is not great, he might go to the Science Museum or movie Theater.  Yes, he does scream, but he does all those things too.

Still, I am very concerned.




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1 Comment

  1. jeanpalmateer

     /  September 14, 2018

    So hard to know a loved one is in pain, and not be able to understand enough to help them.


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