Tuesday, November 17, 2009

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.


12 comments:

GrammieMommy said...

Hi Dawn, dropping by your blog to say hi. Sorry they sent Taylor home; I can feel how frustrated you are. I hope you both have a better day tomorrow, no more elevated temps and such.
Take care ☺ and hugs.
GM

My name is Sarah said...

This is Joyce. Oh so frustating about the temp. The future. Oh that is a big one for me right now too. We had some programs in our area but they are drying up due to funding. I hope it works out for you and Taylor.

TravelingMom said...

Hey Dawn -- Haven't seen you around in awhile. Hope all is well. I love how you talk about Taylor. She seems like such an awesome girl, but I can tell just how much love you have for her :-)

Kathleen said...

Hey Dawn, Long time no chat. Sucks about those damn fever nazis. I, too, use the bathroom ruse to escape activities I don't like.

Trudy said...

Dawn, I also love to escape. lol
I wish thing were going faster with the meds. Thinking of you. Trudy

GothicBttrfly said...

Dawn wanted to say how sorry I am about your fever nazi, we had an incident with our school nurse and a fever this week as well. I think the whole country is going crazy over this H1N1 scare. BTW tell Taylor I love her escape method, it works well for me as well ;)

Becca said...

Wow, temperatures are the "hot" topic these days! I'm so sorry you had to jump through such hoops to try to explain things to the nurse. I'd be incredibly frustrated, too. Good luck deciding what to do after next year. I am sure you'll find something that works best for you and for Taylor, but it really just sounds so daunting. I'll be interested in hearing more about it.

Tina said...

Dawn..

Sorry they sent Taylor home...

Hope you figure out a program for Taylor once she finishes HS..

~Hugs

kathychurch111 said...

My thoughts and prayers are with you all.

hugs,
kathleen

Rebecca said...

Taylor is a beautiful girl, and your love for her is so evident. You are a wonderful advocate for her, and I am sure whatever she ends up doing after school will be a perfect fit. What a joy your relationship is, even with all the challenges.

Jennifer said...

I love that Taylor uses her signs to get out of doing work she doesn't want to do. Sounds pretty darn smart to me!

Sorry they sent her home. Hopefully they'll figure it out pretty quick so that Taylor's schedule won't keep getting screwed up.

I gave you an award on my blog again! I promise, I'm not stalking you or anything, it's just that you are one of my very favoritist reads!

*Tasha* said...

Hey, I've never been to your blog before & just happened to get here...I like your blog! It's lovely, as is Taylor. I have heard that certain students with an IEP can stay in school until they are 21....that could be an option! Maybe even slowly wean her off of school?? That would be easier on anybody. I remember missing school although not the early hours, ha! :] you should look into that...! Best wishes