Who is Tobi?

It was late at night, early in the year 2000 and we were living in Germany. I woke up from a dream and beside me my husband was rousing from one, too. We began to talk, sleepily at first, about how we each had dreamt of a little girl. As it got stranger, we both sat up, clearly dismayed. Why had we both had a dream that same night, perhaps at the same moment, about a little girl named Tobi in a mint green dress? It seemed impossible that it could be true but then my husband and I have a really special relationship and this kind of thing happens to us. Not quite to the extent as it did that night, but then this was an extra ordinary dream of an extra ordinary girl.

Tobi was born the next year. It was unplanned and unexpected. I was even taking the birth control pill. True, I was late that month due to circumstances out of my control but when we found out we were having a baby, it was both terrifying and wonderful. Our 'happy accident' was not going to be our first child - we had two already, but this baby was going to have an age gap between her siblings of 8 and 10 years!

From the beginning, Jens and I didn't notice anything unusual about the new baby, but when my mom came to Germany to see her, she noticed that Tobi seemed extra sensitive to sensory stimuli. And since it had been a few years since Jacob had been a baby, it was hard to remember what was considered 'normal'. Add to that we didn't have many friends, I didn't speak German, and family was in the U.S. We were pretty sheltered; or rather I was; Jens is a German citizen. It was his domain. But for me, I developed agoraphobia and had little contact with anyone but Jens and the kids. There wasn't anyone on the outside looking in until we moved back to the States.

Asperger Syndrome was on the tip of many tongues in the beginning. I think initially family was treading carefully with any big words that might freak us out. We might as well have been brand new parents for all the knowledge we seemed to possess. Was Tobi hitting her milestones? Was her behavior normal? We always thought she was a little quirky but that was just Tobi. The shock that she was different came when we realized how badly our daughter's anxiety was. When we saw how it kept her from reaching milestones. And then she went to preschool.

School has been a trial for her ever since and it's only growing worse as she grows older. Today, we learned that Tobi's meds not only need increasing but will likely need several additional meds on top of the ones she's already taking. We were told it could even take years of adjustments before she gets to where school isn't so terrible that she develops eye twitches, facial grimaces, and full body shakes. We already knew this was a life-long condition but it was hard not to feel discouraged. It's hard to see Tobi suffer.

On May 22, Tobi turned 11 years old. She's had many, many evaluations, the first when she was about 5, and the next big one on the horizon. She's been working with the teachers and special education services people at her school since she started as a wee little thing, and she is currently seeing a counselor outside of school, as well. She has speech and language, comprehension and occupational therapy. She has ADHD, generalized anxiety disorder, and Aspergers. She's considered highly-functioning. She's smart and *amazing* at art and writing; you can ask her to spell any word and she can - she can read anything you give her - but she doesn't often understand what these words mean.

I'm not afraid to use the term 'autism spectrum disorder' but it seems the stigma attached to the word 'autism' is still going strong. I don't believe that Tobi should be afraid of the word; Aspergers is an autism spectrum disorder. It is what is. Tobi knows she has aspergers and we're working on helping her understand what it means. It's not bad, it's just different. Tobi knows she's different and that's ok. It doesn't make her any less special.