Frustration

The word for the day is…FRUSTRATION. I sent Taylor to school today because she has been fever free for over 24 hours. Well, I got a call from the school nurse at noon saying I needed to come get Taylor because she had a temperature of 100.3. Taylor's teacher and I both tried to explain to the nurse that the new seizure medicine Taylor has started has a side effect of increased temperature. Also, Taylor can't regulate her body temperature because of her brain defect. This is documented by a doctor in her school file.

However, the fever nazi didn't want to listen to any of that. I even sent the print out from the pharmacy listing the side effects of the drug. The teacher tried to explain to the nurse that they can tell when Taylor is sick by her actions and she was not acting sick in any way, shape, or form. Taylor did not want to come home. She loves school. Besides, I had her 3 year evaluation meeting at the school anyway, so I had to bring her back with me. She had 25+ seizures in 30 minutes this morning as well, so that was just one more thing for the nurse to latch on to though her teachers are very good at dealing with Taylor when she has bad seizure days. I love her teacher and the aides…they rock!

It's always fun when Taylor is evaluated by the psychologist. It's so anti-climactic. Taylor is still a tardy…what a surprise. Okay, I realize that sounds awful but honestly, sometimes you just wonder where common sense is. Taylor can't take an IQ test. She only has 9 words in her whole vocabulary and maybe 10 signs. I don't need it in writing that my child has a lower IQ than 99% of the people her age.

Some of the things they write are funny. I love this line from Taylor's evaluation…"She knows several signs receptively and signs the word "bathroom" when she needs to use the restroom, but also seems to use the sign when she wants to escape an activity." That is just too funny to me. Sometimes these evaluations can make me a little down, but for the most part, I've gotten past that.

It's trying to figure out what Taylor will be able to do after she "graduates" from school that is frustrating. She is such a social butterfly and not going to school every day is going to be rough for her. She is also too delayed to get a job. I do think we've found a program for her that will meet her needs for 2 – 3 days a week, a couple of hours a day. I still have until June to figure it out.