More 504 help

[CFHockeyMom]

Ok, my DH and I are having a disagreement about this. It's my understanding that we can request whatever we want for a 504 but the school doesn't necessarily have to oblige. It's up to them what actually ends up in the plan. DH says that whatever we want, we get. I don't think this is true because the school will not let Sean carry his enzymes on him and insist that he go down to the office for them. We've been fighting this battle since we moved here.

Can anyone give me an idea of what to expect when we go in with our list of demands. What kinds of resistance have you run into?

Thanks.

 

[anonymous]

Hi, I don't have the answer to your question but I also have a 10 y/o boy with CF who plays ice hockey. It might be nice for our boys to correspond, talk on the phone etc. Are you interested? strassle@earthlink.net

 

[Chaggie]

My high school tried to make me do that, we(my parents and
I) basically ignored them and I continued to carry them with
me and took them when I needed.  Have you explained how
disruptive it would be if your son went to the nurse every time he
ate something, and how much time he would be out of class?
 That is what I would focus on.

 

[folione]

It's my understanding that the 504 plan is only relevant to schools that receive public funds; so private schools do not have to accept or accomodate special needs if they don't receive any Federal/state funding.

 

[CFHockeyMom]

We're in a public school so the 504 will apply.

As far as the enzymes go, this particular district is drug paranoid. Unfortunately, they don't differentiate between drugs and meds. A dangerous precedent if you ask me but I didn't make the rules. We've tried to fight against it but our attorney said it would be an uphill battle tyring to prove that (at the time) a 7 year old is responsible enough to take his own medication. Also, there are a couple of other CFers in the district and their parents have decided to roll over an play dead thus setting a precedent for us to try and overturn. DH and I decided to take the fight up again once DS is in middle school.

 

[Chaggie]

How about some middle ground.  Have him keep his enzymes on
him for snacks and not tell the school, but have him go to the
nurse for lunch.  That is if you can get the teacher aboard or
have him take it without the teacher knowing.

 

[CFHockeyMom]

Good idea Chris. I've got a meeting with Sean's teacher today so maybe I'll suggest it. First I have to figure out if they'll even be havin snack in the classroom. If not, just another thing for the 504.

 

[Chaggie]

let us know how it turns out, I'm interested to see the change in
attitudes between teachers now and when I was your sons age.

 

[Ratatosk]

Several states have passed legislation -- I think Ohio was one, allowing cfers to carry their enzymes. Apparently a child got a bowel obstruction and required surgery because he wouldn't take his enzymes at school. I too worry about this issue when DS is older. Currently there's a policy that all meds have to be kept in a locked cabinet in the office and all the kids have to march down there for their meds. There isn't a full time nurse at most of the schools. I worry that DS will avoid taking enzymes 'cuz it's too much trouble or that the office staff is crabby and makes him feel bad...

Our state recently passed legislation allowing asthmatics to carry rescue inhalers. I contacted our local CF groups to see if they'd ever considered asking state legislators to add enzymes at the time and got ignored. Irony is the head of the CFA of ND is a big wig with the Republican Party. Oh well, we'll just deal with it when the time comes.

 

[2005CFmom]

I remember coming across some info when browsing the CFF website. It was about the 504 and carrying the enzymes issue. If the school comes back with its a "policy" that children do not carry meds ...remind them that the 504 is a federal "law" that would supersede any local "policy".

I'm going to search the CFF site to see if I can find it. It may have been part of a webcast or a Q&A post with the attorney Beth Sufian.

I'll post again if I find it!

 

[anonymous]

I am not aware of this 504 plan. I do have a kindergarten child with cf that goes to the clinic (where all the sick kids are!!!) 3 times a day. Two times for enzymes and once to drink a can of pediasure. So you are saying when he gets a little older he could carry his enzymes on him because of his illness?? I will broswe the website on more info. to.

Fourkidsmom

 

[2005CFmom]

<a target=_blank class=ftalternatingbarlinklarge href="http://www.multicastmedia.com/cff.htm
">http://www.multicastmedia.com/cff.htm
</a>
Go to...Patient Advocacy: Issues & Answers for CF

Play the Q&A portion
The question comes up at the 18 minute mark. I hope this helps.

 

[julie]

Our school had a policy like that too, but are you kidding me? I didn't abide by it. I don't have CF, but I got terrible terrible headaches. I would just fish out my pills and take them. It's a very stupid, disruptive policy and if I were you I WOULD fight it.

Would the CF doc be willing to write a note attesting to the fact that Sean IS repsonsible enough to handle his own enzymes and if he happens to take too many the only real side effect is some bathroom issues???

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>julie</b></i>

Our school had a policy like that too, but are you kidding me? I didn't abide by it. I don't have CF, but I got terrible terrible headaches. I would just fish out my pills and take them. It's a very stupid, disruptive policy and if I were you I WOULD fight it.



Would the CF doc be willing to write a note attesting to the fact that Sean IS repsonsible enough to handle his own enzymes and if he happens to take too many the only real side effect is some bathroom issues???</end quote></div>


I agree with this. Also the CF doc could explain that the enzymes would not be "harmful" if taken by another student. I think this is the biggest concern for the school. Harming another student if the pills were mishandled.

 

[anonymous]

I have had some experience with IEP's with my son who has multiple disabilties (including CF) so I am assuming the 504 plans work similar to that. In my experience it all depends on your school disctrict as to how willing they are to give you want you want. Some school districts bend over backwards to accommodate your child's needs and some do the least that they can get away with. In the prefect world you would assume that since this is a federal law then it would be smooth sailing, but in reality you will probably have to push them to give you what you are wanting. Keep in mind though that if your child is going to be in that school district for the long hall then you need to keep a good relationship with the administrators. Not to be a pushover though, I get what I need for my son by knowing the law and not backing down when they make stupid comments on why they can't do something. I just try very hard not to let my emotions get the best of me when the school is being stupid. I know in Ohio there is the Ohio Legal Right Commission that will go to bat for you if you have problems, I'm sure there is something like that where you live also.

Pam

 

[anonymous]

I have and 8 year old son (also named Sean). His school policy is very strict on "medication" in the classroom; however the principal did hint last year that she too would like him to eventually take his own enzymes. The way I see it is that the 504 plan is a law requiring schools to make reasonable requests to accomodate their child's medical needs. I don't think they have to give us everything - they just have to make sure that somehow the basic need is met.

I know in our case, one of the reasons why they are so strict is they are "uncertain" about the ability of a child to handle his own medication. Once they got to know Sean and got used to the fact that he takes his own medicine, they have relax tremedously. Right now he goes to the office before snack, lunch and any other time food is involved. We are going to ask for him to bring his enzymes with his lunch and then keep enzymes on hand in the office just in case.

Does anyone know where they found out about the state laws and taking medication. We live in California. I am curious which states have adjusted their laws and which ones haven't. It might be a good resource to use when I sit down with Sean's principal

--Katrina, mom of Sean (8 w/CF), Carolyn (7, w/o CF) and Allison (5, w/o CF)

 

[Emily65Roses]

I understand the basic need for medication safety rules.

HOWEVER. CF is different. I hate sounding like we deserve special treatment... but hello! Enzymes before we eat ANYTHING, and we've been taking them our whole life. It's not like we're going to screw it up. As someone else said, it's not like giving a healthy kid enzymes is going to make them have seizures. And going all the way to the nurse before any meal was always a pain in my @ss. I did it through elementary and middle schools. When I got to the high school, I just gave up. I kept enzymes in my backpack and never told anyone. No one questioned it, and I never had a problem. Plus, it was ten times easier.

Oh and this rarely applies to anyone else... but just a little story. When I got to the high school, I had the same nurse. She had been my nurse at elementary school and then moved to the high school. So she had had me for 5-6 years already. She knew me well, and knew I was smart. Knew I knew my sh*t and knew I wasn't going to be a dumb@ss. So when I did go see her at the high school, I think maybe once, she asked about the enzymes. I told her I just didn't say anything and kept them in my backpack and she said it made more sense, and pretended "not to know." Love that woman. lol

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>2005CFmom</b></i>

If the school comes back with its a "policy" that children do not carry meds ...remind them that the 504 is a federal "law" that would supersede any local "policy".

!</end quote></div>

This is absolutely true! However, the parents have to work with the school to come up with the original document. A school could deny a request, but they usually don't. Schools are scared of law suits and bad press. After a 504 is signed it IS legal. My kids both have them.

 

[anonymous]

Both of my children have 504 plans and our school has been wonderful. They even hired a school nurse full time and a health aid to help her 3 days a week. As for as the enzymes both of my kids go to the nurses office before and after they eat to get their enzymes. They have to be locked up. We tried to get it where the teacher could keep them but they wouldn't allow it at this time. They also let the kids both have a water bottle in class with them so they don't drink from the water fountains and they informed all staff about getting over heated and letting them come inside when it is hot to get a drink an get a salty snack. I also am in the process of getting the prinipal to approve no tardies due to two kids getting treatments and having only one vest machine that they share. I have not been late yet but they have been pretty well this far. The school has been pretty good about things. Sydney is 9 will be 10 in Feb and wishes she could just take her enzymes by herself like she does at home but is tolerating it ok. Good luck with everything.
Jeanine mom to Sydney9 w/cf, Trey 5 w/cf and Abbey 2 w/out cf

 

[ReneeP]

Am I the only one who worries that thier child won't take the enzymes if left on their own to do so? I am so glad the nurse has to give them to the girls at school because at least I know they are getting them. The nurse will tell me if they don't show up for them. They only get them for lunch because the nurse doesn't get there in time for breakfast so they have totake their own for that. Heck, I have to remind them at least 2-3 times per meal at home to take them, I can't imagine what it's like when I'm not around. No one else seems to have this problem... is it just me? I wonder what I am doing wrong. It's not like it's a new thing... Kaitlyn is almost 12 and Kacie is 7 1/2...you'd think they'd be used to it... urgh...