The blessing of a diagnosis, even after six long years

This is the third of three blogs today from New Jersey mom SarahG. Her first was on worrying less, while her second was on the decision to homeschool her sons.

Often when I hear other parents tell their TS stories, I hear them talk about how devastated they were when they received their child’s diagnosis.  They were in a state of shock or disbelief, the whole world seemed to come crashing down on them.

On some level, I can sympathize.  I still have days where I find myself grieving for the “normal” child I did not have.  But I have to say, the day we received O’s diagnosis is one of the brighter spots in our journey.

It took us six years to obtain a diagnosis.  We first began visiting doctors and looking for answers when O had just turned 3.  O was 9 when Dr. Cathy Budman confirmed that he had TS.  In the years in between, we went to countless therapists, neurologists, psychologists and pediatricians, all of whom had a different explanation for what was happening.  ADHD was a popular diagnosis, so was Asperger’s Syndrome.

One doctor, instead of a diagnosis, gave us his philosophy of how a diagnosis is something that reveals itself over time.  Try taking that to a school when you are requesting accommodations!  Medications were offered, with terrible results.

Friends, relatives, other parents and random passers-by offered advice, diagnosis and criticisms.  Daily beatings might help, said one.  Set clearer expectations, said another.  Be more lenient.  Use positive language.  One “friend” was convinced that there was nothing wrong with O — the problem lay with me.  So word was spread that I had Munchausen by proxy syndrome.

After a while, I began to wonder if maybe I was imagining things.  I had read piles of books suggesting everything from diet to allergies to parenting could be causing O’s problems.  Checklists for different neurological disorders seemed to suggest that O had anywhere from four to six (or more!) distinct disorders.

I was pretty sure that could not be possible – most of the time.  And yet, the behaviors told me that what we were dealing with was not just ADHD or Asperger’s or whatever other pat answer doctors gave us before shooing us out of the office.

Finally, when O was nearly 9 years old, we took him to Virginia for a neuropsychological evaluation by a doctor who specializes in children like O (gifted children with “other” issues).  She met with my husband and me, asked us a bunch of questions, took a history, and said “Well, I just want to tell you that I believe you.  I do not think you are making this up. You are not crazy.”

I nearly burst into tears on the spot, I was so relieved.   O was given a battery of tests.  Then the doctor spent about twenty minutes just talking with O.  She came out of the interview and said “I counted over a dozen distinct vocal and motor tics during my meeting with O.  I think this might be Tourette Syndrome.”

When O was 5, another parent I only knew online, who lived thousands of miles away, had suggested that O might have TS.  O’s symptoms sounded very similar to her son’s.  But until we went to Virginia, not one doctor we had seen had even mentioned TS.

On our drive back to New Jersey, my husband and I were upbeat and optimistic.  We had known for years that something was not right.  Now, at last, we had confirmation that the problem was not all in our heads.  A diagnosis was a starting point; it allowed us to formulate a plan, to seek out the right doctors and pursue actions that might actually help, instead of grasping wildly for something, anything.

And indeed, once we returned home, by chance I heard a PSA on the radio from TSANJ.  I called the help line.  I was put in touch with a doctor who might be able to help, and I was introduced to the psychological clinic at Rutgers.  Dr. Budman came over to New Jersey, evaluated O, and said, yes, that’s TS.  And so the second part of our journey began….

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