In the summer of 2008, two months before her third birthday, we took our little girl to be evaluated for the special education preschool program…and then we took off for the beach. We were on the verge of moving our child “into the system,” hearing just how far behind the norm she really was, and writing her first IEP. We sat in tiny chairs in a stifling elementary school classroom in August, half-listening to the school psychologist bombarding us with questions, as we desperately tried to eavesdrop on the teachers and therapists who were evaluating Kendall. Even from across the room, I could see that she wasn’t following their directions to put the cup on the plate or to hand them the green block. I knew that she was completely distracted because she was much more interested in dumping all of those colorful blocks out of the basket and lining them up on the table. I dug my fingers into my knees to keep myself from jumping up to try to explain it to her in a way she might understand. I wanted desperately to show them what she COULD do. But I knew the purpose of their method…
Finally, it was over. The car was packed, and we headed to Maine for a carefree week on the shore!
This family vacation stands out in our memory for so many reasons. It was Kendall’s first trip to the see the ocean, and it seemed almost magical at the time. Kendall couldn’t get enough of the sand and the waves. Every time we went back to the hotel room, she would bang on the door, calling “Outside! Outside!” I can’t remember a time when her smile was bigger. The unbelievable bliss made me want to stay on that beach forever, never returning to reality.
Looking back, though, I think that I remember that vacation so fondly because it was our last escape. There weren’t any concrete assessments of Kendall’s lack of ability weighing on our minds. We weren’t yet thinking about proper classroom placement and IEP goals. We knew that it was coming, and perhaps this made the feeling more sweet. We were able to literally keep our heads in the sand for one more week.
There are still times when I can feel myself making a conscious effort to keep my head in the sand. I don’t want to think about how far behind she is, the additional work that needs to be done, and the prognosis for the future. I don’t want to worry about the results of the last evaluation or the treatments that those results will bring. I don’t want to watch her side-by-side with other children and yet worlds apart. And please do not make me think too hard about the fact that she is now 11-years-old, and we are STILL watching Caillou!
My curiosity (and obvious parental responsibility) brings my head out of the sand, though. Kendall’s development is different and continues to change in incredibly interesting ways. At this point in her life, we have learned so much about the way that her mind and body work, but she’s still such a puzzle. Why is one-to-one correspondence an elusive concept for her? What could help her get a better sense of her physical surroundings (in other words, not have her legs constantly covered in bruises)? And, really, why does she still want to watch Caillou?!
She just had another 24-hour EEG last month–the fourth in her lifetime–and we met with the pediatric neurologist/behavioral pediatrician today to talk about the results. He’s been a solid member of Team Kendall for the past eight years. Based on the results, he’s recommending further neuropsychological testing and consultation with one of the other neurologists. More questions to be explored, which is exciting and terrifying all at once.
But I’ll keep my head out of the sand. Maybe, just maybe, we’ll find the Caillou off switch…
Team Kendall 