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Family learning, coping after figuring out daughter’s ‘quirks’ were TS, other disorders

By 2 years old, I knew Bean was a little different than the other kids in her playgroup.  As my first child, I had always thought she was perfect — that her many “quirks” were just a part of her very vibrant personality and not anything that were strange or unusual.

Her extreme sensitivity to clothing — especially socks, tags, seams, waistbands and coats — I attributed to her very keen senses.  After all, she had never liked to be swaddled as an infant.  She had always thrown a fit when being strapped into a car seat.

She was not able to easily eat the finger foods her friends ate. I would have to break Cheerios and Veggie Booty into what seemed like a million tiny pieces for any chance of them making it down without her gagging on them. All of this I casually thought was not unusual, and it was all just a part of what made her, well, her.

Once, when attempting to watch a popular toddler move, the storyline very much upset her.  I was told how she is the most overly sensitive child this person had ever seen.  That comment was innocent enough, but sounded like, and felt like an insult, a criticism, a comment on my parenting.  I was hurt, and confused.  Why would he say that?  My daughter is no more sensitive than other kids her age…right?  What did he see that I did not?

There were clues everywhere, invisible to me at the time.

She was very concerned with what other people, other toddlers, thought of her.  Worried about how she was perceived.  At 2 years old.  A friend did not want to hold her hand on the way into preschool one day, and it devastated her.  She worried for weeks and questioned their friendship, wondered what she had done to turn her friend away.  Her friend, of course, being two year old, promptly forgot all about it, but Bean would never forget.  I reasoned that this was just a quirk of an intelligent child who was extremely self-aware.

Bean started to bite her fingernails, and the skin around them, when she was 2.  Bite them until they bled.  We tried everything.  Everything.  Nothing got her to stop.  This is when I started to accept that my baby, my perfect, beautiful, funny, smart and talented baby, was very…quirky.

She was prone to “habits” that she just couldn’t shake.  She was an amazing artist, extremely creative, ahead of her peers with every milestone, but was plagued by anxiety about her relationships, everyday situations, transitioning from one thing to the next, and by any unexpected change in plans.

Cut to spring 2010, Bean’s constant “habits” that had come one after the other all these years had started coming two, three, four at a time.  They started looking like mini seizures, with her eyes rolling back in her head while her shoulders shrugged, her head moved back and forth, and grunts uttered from her lips.

I watched it all happening from the window at a karate birthday party — horrified, knowing, for the first time, that there was something wrong with my little girl. I watched her convulsing beside the birthday boy in a video clip from the party a friend posted on her Facebook page.

I knew it was time to figure out what was wrong — and how we could help her — because she was suffering.

That summer she was officially diagnosed by a neurologist with Tourette Syndrome, Obsessive Compulsive Disorder, ADHD, depression and Intermittent Explosive Disorder.  This was not a surprise to me, because once I realized that she wasn’t just “quirky,” that that her sparkling intense personality wasn’t the cause for all of her differences, I spent day after day, night after night, scouring the Internet.

I jotted down every habit, every quirk, everything I could pull from the recesses of my mind, on endless sheets of paper.  Feverishly remembering, writing, grouping, formulating my own hypotheses; any possible diagnosis ideas scrawled on the sheets of paper; trying to make sense of it all.  Trying to fit the pieces of the puzzle together.

Because by this time I had decided that there were too many bits for there not to be one big something that explained it all.  Too many unanswered questions, too many quirks for her to not have one diagnosis that would solve the puzzle.  Feverishly obsessed and feeling like the answer was close at hand, I looked and read and searched.

And then I had it. The answer that fit all of the pieces of the puzzle together. My amazing, gorgeous daughter is not quirky or overly sensitive . She has Tourette Syndrome and its associated disorders.

And now …now we feel our way in this foreign land, taking each new development as it comes.  Continuing to explore, to read, to learn, to cope. And to try to find our way home.

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