The Moving Target: Before Diagnosis

Since Katherine's Tourettes began she has been a moving target. Before she began taking meds, the tics were continually getting worse or there were new tics or new triggers for old tics. And we were constantly looking for new and better ways to help her.

When Katherine's only problem was autism, her existence was pretty stable. Her sensory needs stayed pretty much the same. She liked to spin and look at things from a very short distance. Her language skills changed gradually and completely in conjunction with what we were teaching her. Her motor skills were fantastic and her food tastes pretty predictable. Pretty much any significant changes in her could be traced to her environment and managed with behavioral teaching.

But after her additional neurological issues began to develop in the June of 2010, that was no longer the case. Her Tourettes symptoms started small and we had no idea what they were. Her first tics were just mouth and arm movements. As summer turned to fall, her tics became much more dramatic. By mid-September her tics were already substantially more intense than what most people with Tourettes ever experience. We continued to try to manage it behaviorally. We didn't know it was a medical issue. We didn't know it was Tourettes and, as with most tics, her movements seemed intentional and often occurred at times that reinforced that perception.

The behavioral techniques weren't working. We ignored the ticcing and rewarded her for not-ticcing. We tried using successive approximation. We finally, in late October, in desperation, we started giving her consequences for ticcing. We didn't know that the movements were involuntary! Oh that poor little girl! Her own body has turned against her in very intense ways. She must have been frightened and confused. And then the people she trusted and counted on to help her began punishing her for doing the very things she already didn't want to do as if the tics themselves were not punishment enough.

She began to lash out at us. When tics come in clusters, she would tic for 5 to 10 seconds and then have 1 to 2 seconds of reprieve. She had control of her body during those two seconds and she began to turn toward the closest adult such that her blows against her own body were hitting that adult too. Inside she must have been crying out. Why aren't you helping me?! Why is this happening to me?! Her tics were things that would badly frighten ANY child. How much worse must it be for a child who doesn't have the language skills to take understand an explanation or to be able to express her feelings about what was happening to her?

By December, we began to see that the tics were involuntary. That she hated ticcing. And we began to comfort her instead of punishing her. She was still miserable, the poor little thing, but at least we were now on her side. She responded almost immediately by making every effort not to hit or kick other people.

We continued to limp through the rest of the year without any answers. She had blood work and her first appointment in a set of referrals to new specialists but they yielded nothing.  She was miserable and so was our family. Life was revolving around Katherine in a way that it never had before. Managing Katherine's tics was the relentless purpose of our existence. We still managed to go through most of the motions of a normal family. We had to try to live as normal a life as possible under the circumstances but the burden was enormous and pretending things were okay became harder and harder.