{"id":68,"date":"2011-11-15T15:00:44","date_gmt":"2011-11-15T20:00:44","guid":{"rendered":"https:\/\/njcts.org\/tsparents\/?p=68"},"modified":"2011-11-15T15:00:44","modified_gmt":"2011-11-15T20:00:44","slug":"the-blessing-of-a-diagnosis-even-after-six-long-years","status":"publish","type":"post","link":"https:\/\/njcts.org\/tsparents\/the-blessing-of-a-diagnosis-even-after-six-long-years\/","title":{"rendered":"The blessing of a diagnosis, even after six long years"},"content":{"rendered":"

This is the third of three blogs today from New Jersey mom SarahG. Her first <\/a><\/strong>was on worrying less, while her second <\/a><\/strong>was on the decision to homeschool her sons.<\/em><\/p>\n

Often when I hear other parents tell their TS stories, I hear them talk about how devastated they were when they received their child\u2019s diagnosis.\u00a0 They were in a state of shock or disbelief, the whole world seemed to come crashing down on them.<\/p>\n

On some level, I can sympathize.\u00a0 I still have days where I find myself grieving for the \u201cnormal\u201d child I did not have.\u00a0 But I have to say, the day we received O\u2019s diagnosis is one of the brighter spots in our journey.<\/p>\n

It took us six years to obtain a diagnosis.\u00a0 We first began visiting doctors and looking for answers when O had just turned 3.\u00a0 O was 9 when Dr. Cathy Budman confirmed that he had TS.\u00a0 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.\u00a0 ADHD was a popular diagnosis, so was Asperger’s Syndrome.<\/p>\n

One doctor, instead of a diagnosis, gave us his philosophy of how a diagnosis is something that reveals itself over time.\u00a0 Try taking that<\/em> to a school when you are requesting accommodations!\u00a0 Medications were offered, with terrible results.<\/p>\n

Friends, relatives, other parents and random passers-by offered advice, diagnosis and criticisms.\u00a0 Daily beatings might help, said one.\u00a0 Set clearer expectations, said another.\u00a0 Be more lenient.\u00a0 Use positive language.\u00a0 One \u201cfriend\u201d was convinced that there was nothing wrong with O — the problem lay with me.\u00a0 So word was spread that I<\/em><\/strong> had Munchausen by proxy syndrome.<\/p>\n

After a while, I began to wonder if maybe I was<\/em> imagining things.\u00a0 I had read piles of books suggesting everything from diet to allergies to parenting could be causing O\u2019s problems.\u00a0 Checklists for different neurological disorders seemed to suggest that O had anywhere from four to six (or more!) distinct disorders.<\/p>\n

I was pretty sure that could not be possible \u2013 most of the time. \u00a0And yet, the behaviors told me that what we were dealing with was not just ADHD or Asperger\u2019s or whatever other pat answer doctors gave us before shooing us out of the office.<\/p>\n

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 \u201cother\u201d issues).\u00a0 She met with my husband and me, asked us a bunch of questions, took a history, and said \u201cWell, I just want to tell you that I believe you.\u00a0 I do not think you are making this up. You are not crazy.\u201d<\/p>\n

I nearly burst into tears on the spot, I was so relieved.\u00a0\u00a0 O was given a battery of tests.\u00a0 Then the doctor spent about twenty minutes just talking with O.\u00a0 She came out of the interview and said \u201cI counted over a dozen distinct vocal and motor tics during my meeting with O.\u00a0 I think this might be Tourette Syndrome.\u201d<\/p>\n

When O was 5, another parent I only knew online, who lived thousands of miles away, had suggested that O might have TS.\u00a0 O\u2019s symptoms sounded very similar to her son\u2019s.\u00a0 But until we went to Virginia, not one doctor we had seen had even mentioned TS.<\/p>\n

On our drive back to New Jersey, my husband and I were upbeat and optimistic.\u00a0 We had known for years that something was not right.\u00a0 Now, at last, we had confirmation that the problem was not all in our heads.\u00a0 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.<\/p>\n

And indeed, once we returned home, by chance I heard a PSA on the radio from TSANJ.\u00a0 I called the help line.\u00a0 I was put in touch with a doctor who might be able to help, and I was introduced to the psychological clinic at Rutgers.\u00a0 Dr. Budman came over to New Jersey, evaluated O, and said, yes, that\u2019s TS.\u00a0 And so the second part of our journey began\u2026.<\/p>\n

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