Answers, Still Waiting

I had hoped that my next entry would be one with the answers we've been waiting for.  But no such luck.  After so many appointments and evaluations we still don't have the one answer we want the most from the entity that has the most weight.



The visit to the developmental paediatrician was gravely disappointing.  After an hour of asking me questions while only occasionally glancing over at him sitting next to me she declared she had the final, definitive answer.  As she began to give her diagnosis I felt so confused, how do you come up with such a conclusion after such a sort visit?  Surely there must be more to look at, compare with different environments and stimuli.  An adult would not be diagnosed with a psychological disorder after an hour interview with their closest family member while the patient just sat there with occasional glances.  Why would the standard for a child be any different??

I could not accept ADHD.  Especially when the first word after that was "medication."  Too many things did not fit, too many things we did not get to go over.  She justified it with "he has friends" and "is affectionate."  She didn't ask how many friends or how those friendships came about.  He has two, both he has known his hole life.  He is comfortable with them and therefore can interact with them appropriately.  They are about his age and they seem to understand, even without being told, that he isn't quite right and treat him as such.  And yes, he is affectionate, he can be so very sweet.  But he also does not respond well to many emotional things kids his age do.  So many pieces of the puzzle just did not fit.

I took her referrals for occupational therapy and psychological therapy and decided to keep looking elsewhere for another answer.  A true "expert" in our suspicion.

A big hurdle has been the recent change from DSM 4 to DSM 5.  Some places have made the switch, others not yet.  So I had to go through both and see where he fell in both.  Then learn to ask which manual is being used to diagnose my child.  I never thought I'd be asking such a question, never crossed my mind that different doctors used different standards for diagnosing.  It has been a long and tedious journey.

His psychologist uses DSM 4 and says he has Asperger's.  That sounds about right to us.  He also has a behaviour disorder, which also seems to make sense.  The occupational therapist that evaluated him first said he has a sensory disorder, which we were so certain of, but not OCD.  We have learned the difference between OCD and ritualistic behaviours.  Ritualistic behaviours are typical of those on the spectrum.  And so are behavioural problems.

The local Regional Centre, which we have put all our faith on, has done an extensive evaluation of him.  He was seen by two different people in four two hour sessions.  I was asked all the questions I have now been asked about a thousand times, filled in different questionnaires, answered more questions, and Nicholas was observed in different places with different activities.  The last one was at a park where the evaluator observed him attempting to play in the playground.  It was so heartbreaking for me to watch.  I long stopped taking him to a park because he was not enjoying it.  There are too many children, he doesn't know how to interact with them and they don't know how to handle him.  He wandered aimlessly around the playground staring down at the sand.  He tried a couple of different things and tried interacting with some children but failed.  We are anxiously waiting for their final diagnosis.

For now he has OT twice a week and sees the psych once a week.  So far, we are not seeing any improvements but have been told things will likely get worse before they get better.  We are hopeful.