posted May 18, 2009 at 1:25pm
Sophie wet her pants at school on the first day of the second week of fifth grade.
“Well, accidents happen,” I said to the school nurse when she called to explain why Sophie would be coming home in different clothes. I wasn’t so concerned at first; Sophie almost never wets her pants (I think maybe once in the last two or three years) but it’s true that people with Down syndrome tend to have low muscle tone that makes it hard to discern the urge — til it’s almost too late. Or worse.
Plus, Sophie really likes what she calls “nurse panties.”
But as I thought about it, driving home, I began to wonder: “Where was Mrs. A.?” That’s Sophie’s aide (I’m not using her name or even her initial here). She’s been with Sophie for more than two years. Doesn’t she know to remind her to use the bathroom?
“Where was Mrs. A. today?” I asked casually, later that evening.
“DIBELS,” Sophie said. DIBELS is a standardized test given several times a year; it requires one on one testing. Oh, I thought, they must have gotten Sophie a sub and pulled Mrs. A. to help for an afternoon. No biggie.
On Wednesday, Sophie didn’t have homework written down, and when I asked her about her day, she told me she’d started science and social studies, which is a big deal — new teachers, up a big flight of stairs from her homeroom class. “Sarah was my helper!” she said, referring to her best friend and fellow fifth grader.
“Where was Mrs. A.?” I asked.
By Friday morning I had written the principal a concerned email. Friday night, I asked Sophie if she’d seen Mrs. A. that day.
“Yes!” she said. “She gave me my DIBELS testing today.”
By Monday afternoon, the principal had investigated and Mrs. A. was back with Sophie. But I was left with questions, namely: How did this happen when Sophie’s IEP (a supposedly binding legal document) specifies that she have an aide?
Good timing: Sophie’s team was already scheduled to meet tomorrow after school. Here’s an edited version of the note I sent them last night:
First, please let me begin by saying how much we love and appreciate this school, and everything everyone has done and is doing for Sophie. She seems happy so far this year.
I believe I expressed to all of you before school started that I wasn’t in the least bit concerned about how fifth grade would go for Sophie — that my focus is already on sixth grade and finding her a fit as good as this one as she moves into junior high.
I probably should have made it clear that a huge part of why I was feeling that way is Mrs. A. Fifth grade is going to be hard and different for Sophie, and on top of that she has a new resource teacher. But I felt very confident that Mrs. A. would be a terrific bridge and a help in getting Sophie comfortable working with both the fifth grade teachers and the resource teacher.
Mrs. A. is truly amazing and has a wonderful way with Sophie; I didn’t have a care in the world, knowing she’d be with Sophie in fifth grade and I know we lucked out in getting her.
We waited several years before finally deciding to fight to get Sophie a aide at school, and it wasn’t a decision made lightly. But after a fairly serious bullying incident that jeopardized both her emotional and physical safety, it was clear that for Sophie to continue to thrive and be safe at the school, that’s what she needed. It happened, and was written into her IEP.
I knew that the school (like all schools these days) is short staffed and that Sophie would not need Mrs. A.’s direct attention 100 percent of the time.
But you can imagine my dismay when I realized that Sophie was completely without Mrs. A. — or any other aide — for an entire week, and not just any week but the second week of this school year. (And possibly more, I have frankly been afraid to ask.)
Sophie is not a 100 percent reliable narrator (although always an entertaining one) and so I was not convinced when she told me on several occasions last week that Mrs. A. was not with her because she was doing DIBELS testing.
I now understand that a reading specialist pulled Mrs. A. to do the testing. But what I don’t understand is how that happened, given that Sophie has an IEP. I don’t see how that honors either the letter of the law or the spirit. I considered not saying anything but I decided I had to for two reasons:
First, because of several incidents last week. Sophie wet her pants last Monday afternoon at school, something that has only happened once or twice in recent years. She came home several days last week without any homework written down. She told us that Sarah (her best friend, a fellow fifth grader) was her helper in science and social studies in lieu of Mrs. A. Her iPad went missing.
Now, those are things that could have happened with a personal/instructional aide present — but I doubt they would have. I am concerned because it was only the second week of school. I am concerned because the IEP team felt there was a real need for Sophie to have an aide, and yet no one mentioned it to me when that aide disappeared for a week. I am concerned because clearly I have no idea what goes on while Sophie is at school. I don’t know what else happened last week. Or what could have happened last week.
Which leads to my second reason for saying something. I feel very strongly that there’s been a breach of trust here. I do understand that there are hundreds of kids at this school, and limited resources. Every parent who drops their kid with you each morning is doing so with an understanding that certain things will take place throughout the day to ensure safety and the delivery of a good education. It’s true that in Sophie’s case it’s a a much longer list. And I’m grateful to have her at the school. But now I have strong doubts about what’s going on at school. Is this the first time Mrs. A. has been pulled for a week to do testing? What other times has she been pulled and who helped Sophie in her place? I am told that in order to perform DIBELS testing, one must be trained for several days. When did that happen?
Has Mrs. A. been with Sophie at all so far this year? I’m told that she will be, moving forward, and I want that to be enough, but it isn’t.
I really really hate that I am asking these questions, even in my head, let alone of you. I know you all love Sophie and the other kids at the school and are doing your best to deliver services to all. But more than a legal no-no, this was a violation of the trust of a family. It’s going to be a long time, if ever, til we will drop Sophie off at school in the morning and drive away without wondering what’s going to happen that day. And it’s not simply because Mrs. A. wasn’t with her; it’s because we had to hear that from Sophie herself. Nothing truly bad happened last week. No harm no foul, right? But it could have. Why does a reading specialist — whether at the school or district level — have the authority to violate the terms of an IEP? And how do I know that that — or something similar — won’t happen again? Not only was it not fair to Sophie, it was not fair to the personnel who had to pick up the slack in Mrs. A.’s absence.
That’s what I need to discuss on Wednesday: a protocol for how the aide provision in Sophie’s IEP will be delivered. I won’t be unreasonable; I just want to be informed.
I’d also like to discuss making sure Sophie’s math homework is enlarged on the copy machine; making sure her homework assignments are written down each day and easy for us to interpret; making sure there is a plan in place for typing or writing assignments; whether it would be possible to incorporate a goal in her IEP that will allow everyone to work on discouraging her from sucking her thumb. I’m not sure where that can be categorized in the goals, but I’m sure you will know. I’ll look forward to hearing what you have in mind, as well.
Thanks for reading this.