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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Friday, January 28, 2011

A Work In Progress

Yesterday morning we all finally met to have Jenna's 504 plan meeting. We have only been trying to do this since the beginning of November. It's now the end of January. ZOINKS. Mother Nature played a role in it, cancelling school and therefore the meeting on two occasions. Plus trying to coordinate with our schedule, her teacher, PE teacher, principal, guidance counselor and school nurse (who is shared w/ another school) is tricky at best.
I was so nervous going into this. I don't do well in these kinds of situations. It always feels very confrontational to me and I don't do well at all with confrontation. That, plus, our initial meeting didn't go real well. We left there feeling as though we would need to battle school officials to get this for her since she is ahead of her grade level academically. *I* knew that her medical conditions entitled her to a 504 plan to ensure her comfort and attendance at school were not an issue. Just not sure they knew.
We felt much more supported at this meeting. The majority of the room seemed to understand, have compassion and be on Jenna's side. Makes sense given this is a K-3 school right? Compassion? Understanding? For children?? Eh...at any rate, some great ideas were thought up and I feel confident that everything will work out.
I did mention that at her March appointment at Duke Children's I would be speaking with the social worker there and I will see if she can contact the school guidance counselor directly to iron some things out. I really think that may be the best route.
I emailed her teacher this morning to see if the tempurpedic cushion we had brought in for her chair had made it to the classroom. She said it did indeed and so far it seemed to be working great for her! She also said however that this had her classmates asking a lot of questions. She felt it was time to sit them down and discuss Jenna's illness with them but wanted to check with us first to make sure that was okay. I love that she is so in tune with all these kids. I told her it is absolutely okay. Jenna won't be comfortable with it but she needs to learn that her friends can be her biggest support system. This disease is a part of who she is. She needs to own it. I am very eager to hear how this all played out today.

6 comments:

Courtney said...

Work in progress but going in the RIGHT direction it sounds like! I am happy to know this.

As for her teacher wanted to talk with the other kids, great idea! I don't think that Jackson's classmates have any idea since the meds are working so well for him. I'm hoping to get with Tony, our local arthritis foundation connection, to brainstorm some ideas about going in and talking with the Principal/Asst. Principal to see about some support for the walk, be it money wise or joining our team.

Amy Cunningham said...

DEFINITELY heading in the right direction!
Getting your local AF involved with spreading awareness at Jackson's school is a great idea! Keep us all posted!

Alexandra {{Awareness Warrior}} said...

I was nervous when you said "It could've been worse" that you were just trying to sound upbeat when you preceded it with "OK!" Sounds like things are going in the right direction! I'm glad.

I'm kinda surprised that if she's above grade level academically that they are setting up a 504 versus an IEP. I'm gifted in language arts (not overall, and it sure doesn't mean I keep up with my work, but nevertheless I'm gifted and have an above average IQ), so I fall under the individualized education program umbrella, gifted and other health impaired. Basically I have the 504 accommodations, plus the school gets extra funding for having to teach a gifted student. That's actually why they switched me to the IEP, was because they get money for kids on IEPs, but not 504s. Now that I'm older and have more of a role in the meetings than I did before, they get to know me and the fact that they're not going to get anything done if they're not honest with their motivations and blunt about what's going to happen or not happen. Beating around the bush doesn't do any good, because we've been doing this for five years now and know their tricks. :)

I think having the hospital social worker talk to the school counselor is a great idea, by the way. I'm really glad, too, that the school didn't get all offended over it.

The focus should always be on the child. Teachers are there to teach the child. The nurse is there to treat the child. The guidance counselor is there to guide the child. When the school forgets that because they're more worried about how difficult it will be on them, all it does is hurt the child and take time away from the parent that the parent needed to take care of the child. I don't mean to say that teachers have an easy job. But there are so many that could use to be a lot more cooperative and understanding.

< / end rant >

Amaday said...

Oh, I am sooooo glad to read this! I've been so exhausted this week... I'm sorry to say that I didn't even see that you posted until I was heading to bed last night.

Jenna's teacher sounds like Emily's kindergarten teacher. She was AMAZING!!! Our school has really looked out for her. I'm hoping that maybe now your school will look out for Jenna more now that the principal & vp are in the loop. I hope so. That makes it so much easier.

Amaday said...

Oh, I am sooooo glad to read this! I've been so exhausted this week... I'm sorry to say that I didn't even see that you posted until I was heading to bed last night.

Jenna's teacher sounds like Emily's kindergarten teacher. She was AMAZING!!! Our school has really looked out for her. I'm hoping that maybe now your school will look out for Jenna more now that the principal & vp are in the loop. I hope so. That makes it so much easier.

Amy Cunningham said...

Alex, I have to say again, you are one AMAZING kid! It's interesting that being gifted got you an IEP. I was told those are for kids that struggle with their education. Interesting. Possibly as you pointed out, they simply don't want the work involved in getting it together. Oh and the reason I said it went "OK" is that I have to be careful with what I say in public settings :)
Danielle, been wondering where you have been! Her teacher really is amazing :) I am hoping the same. That now that we have this rolling, it will put things into a new light for them. Also, the pillow coming into the classroom got the kids asking questions, SO, with my permission, the teacher sat all the kids down and explained everything to them. So now her classmates are in the loop too. As uncomfortable as it made Bean I think it's also a relief for her. The elephant in the room is now really out in the open and he has a name.