Bill might soon allow students to self-administer enzymes in school!

[randford]

This is an example of what happens when volunteers and families take the initiative. So I have to brag! CF Volunteer and Advocate, Debbie McConnell and CF family, Peggy Davis of the Clarksville, TN chapter, met with Tennessee State Senator Mike Green and a bill was crafted to allow CF students to self-administer enzymes. As you can see, the bill is in progress and there is great hope that it will soon be law!http://wapp.capitol.tn.gov/apps/BillInfo/Default.aspx?BillNumber=SB0724&ga=109

This is an example of what two people did on their own. They know how important it is for CF kids to function as normally as they can in a school environment and be spared embarrassment. That's a BIG deal to younger patients! Thank you Debbie and Peggy!

Debbie is a tireless advocate and supporter of CF. She had four family members who succumb to CF. Peggy has two sons, in school with CF so this is very important to her. They are just two people but they got done! You can do this in your state as well! Find out how. Contact your local CFF office. If nothing is happening already, call your state representative! This is a good thing and easy to do. It should be in every state...but that's up to you!! Be your own advocate!!

Debbie's page:
https://www.facebook.com/debbiemcconnell007

Peggy's Page:
https://www.facebook.com/peggy.smithdavis

 

[believingjesus]

Wow Randford! That is great! I know my son really needed that when he was growing up as he always had to go to the office to get his enzymes and the other kids would ask why he had to do that which is another reason for other kids to exclude another child for being "different" than they are. I like that two people were actually able to get something accomplished. That is a wonderful change for the better and I am glad for that. Thanks for posting it!

 

[ethan508]

I don't know if my parents just got it or my school wasn't so PC but I never went to the office for meds. Just kept a handful in my pocket and snuck to the drinking fountain right after lunch. No one knew I took meds unless I wanted them to know. It helped me feel in control (the last thing a kids needs is an idiot classmate teasing them about CF). Heck, after 4th or 5th grade I doubt any of my teachers knew I had CF (or if they did they didn't ever say anything about it). Times have changed.

Glad someone realizes presonal responsibility and personal privacy are important, even to kids.

 

[randford]

Ethan and Believing, you're right! One of my family members had to go to the office to get his enzymes and it was very embarrassing. The kids would raz him. So hopefully this law will help others in the future.

 

[Jet]

When I was a kid the schools would let me carry them myself. Like Ethan, I was pretty good at taking them quickly. Only my good friends and some teachers knew. I think it also made me take responsibility for my CF at an early age. I think that's very important because there is always something new to deal with CF everyday. The sooner you learn that the better. I'm glad that common sense might prevail.

 

[welshwitch]

As a kid I was allowed to make my enzymes myself at school. However, when our class went to science camp (essentially a sleep away camp in the woods for a week) I had to go to the camp office every time to take my pills. Very embarrassing. In fact, I still remember science camp for the pills thing rather than what it should have been, a great educational experience! What a stupid rule.

 

[nmw0615]

I must've had an extremely different school experience because I never minded going to the office to get my pills. The entire school knew I had CF because my dad and I did presentations for every class at the beginning of fundraising for the CFF, but I never felt ostracized for it. I'd walk to the lunchroom with my class, take a detour to take some pills, then meet up with my friends in the lunch line. I only started carrying my own pills in high school, and that was because we were allowed off campus for lunch.

 

[ethan508]

Welshwitch you reminded me the only time I had to go to the office for my pills was a the 2 CF Camps I went to as a kid. But in that case every kid was in line at the office so no big deal.

 

[LittleLab4CF]

When I was in school in the fifties and sixties the schools didn't involve themselves with any medicines except at a parent's request. I didn't have any children but was involved in the lives of my sister's children, sometimes they lived with us, involved. My eldest niece was in school beginning in 1983 when I had no more than casual knowledge of how school policies had changed. I was saddened to see how onerous the rules had become.

All common sense flexibility in the special cases were blunted by a zero tolerance policy by the time my niece began school. Like most policies driven by reactionary motives, everybody loses something and insults anybody who isn't the lowest common denominator.

Having said that, I caused a minor poisening of a fellow student that my guess is a big reason school systems have this new policy. When I was in fourth grade, thanks to CF I had a nasty case of canker mouth and was prescribed a mouthwash that I gargled and rinsed with after meals and such. To be portable and convenient, it came in a packet and I would dissolve it in a glass of water after lunch at school. Another kid got the packet away from me and poured it into another kid's milk. Despite my warnings not to try drinking the milk, the kid did drink it. Predictably, within a minute it was hurl city. When the inevitable meeting of the parents of the kid who got sickened, my parents and principal met, the rule that all students were required to check their medicines in with the nurse was made on the spot. Nothing I represented was in question, the other kid had told essentially the same account of the lunch room incedent. I hate to say it but I doubt that this would happen today. Everyone would have lawyers, the 600 pound gorilla in the room that for good or bad can turn a knee jerk into a marathon.

Being 8 or 9 years old, when this happened it was easy to feel indignant and unfairly treated. The only mistake I made was displaying the packet by placing on a lunch table filled with fourth graders. Duh! From the perspective of an adult with a lot of life experience, it is obvious that the entire incident was predictable. As a little boy it wasn't lost on me that I was culpable, my mistake was not being more discreet. I wasn't showing off with my mouth wash but it was what I was expecting to be accused of at the parent's conference.

In a way, it was a surprising time, and place. I am certain that the lack of any formal policy was an attitude of protecting people's privacy. Every boy had a pocket knife from first grade to graduation, and a volunteer staff tallied the attendance slips from every class, every hour from middle school on. If a student didn't show up for school or missed being accounted for, the parents were immediately contacted. This included sending a police officer to inform a parent that wasn't available by phone. A vestage of the Federal government's role in assuring that we had a uniform, educated society, everyone was required to complete 9th grade, special powers were granted to enforce compliance.

The reasons behind the total flip flop has more to do with all of the other students than the child wise beyond her or his years with respect to the medicines they take. As long as kids needing to carry medicines are discreet when getting them out and taking them, there shouldn't be any issues. It is wonderful news.

Kids who are accustomed to taking medicines and dealing with a chronic illness shouldn't be punished for the actions of other kids. The sad truth of this is the very children that for whatever reasons would be inclined to take one kid's medicines and perpetrate an incident are the same children that will harass a kid who goes to the nurse to get and take their medicines.

It is a wonderful idea to educate and diffuse any questions and concerns at a school. It is also possible to inadvertently mark your child for others who weren't possible to enlighten, maybe one or two and that may be enough. Kids go through so many stages and I don't remember any that didn't have times when they were overly self conscious. I would prefer to see these policies protecting the rights of the patients. We can baby proof a home but I find the tendency to baby proof the world revolting.

Thanks for bringing the Hopefully, Good News,

LL

 

[donin]

I was able to negotiate my son carrying his own enzymes starting in kindergarten. But, he is 26 so it was before the panicked, over-protective, zero-tolerance era. Once in middle school a teacher found them and was exercised because he thought he had a red-hot felony on his hands - but it was quickly resolved. I hope that bill passes and that cooler, more logical heads prevail.

 

[randford]

LittleLab4CF, thanks for the story. No doubt school systems these days have a zero tolerance, knee-jerk reaction to everything when common sense should prevail. As a result, a great number of students suffer by the hands of school boards that are more concerned about law suits than anything else. They may have their reasons but in the end, the children suffer.

When I was in school in the fifties and sixties the schools didn't involve themselves with any medicines except at a parent's request. I didn't have any children but was involved in the lives of my sister's children, sometimes they lived with us, involved. My eldest niece was in school beginning in 1983 when I had no more than casual knowledge of how school policies had changed. I was saddened to see how onerous the rules had become.

All common sense flexibility in the special cases were blunted by a zero tolerance policy by the time my niece began school. Like most policies driven by reactionary motives, everybody loses something and insults anybody who isn't the lowest common denominator.

Having said that, I caused a minor poisening of a fellow student that my guess is a big reason school systems have this new policy. When I was in fourth grade, thanks to CF I had a nasty case of canker mouth and was prescribed a mouthwash that I gargled and rinsed with after meals and such. To be portable and convenient, it came in a packet and I would dissolve it in a glass of water after lunch at school. Another kid got the packet away from me and poured it into another kid's milk. Despite my warnings not to try drinking the milk, the kid did drink it. Predictably, within a minute it was hurl city. When the inevitable meeting of the parents of the kid who got sickened, my parents and principal met, the rule that all students were required to check their medicines in with the nurse was made on the spot. Nothing I represented was in question, the other kid had told essentially the same account of the lunch room incedent. I hate to say it but I doubt that this would happen today. Everyone would have lawyers, the 600 pound gorilla in the room that for good or bad can turn a knee jerk into a marathon.

Being 8 or 9 years old, when this happened it was easy to feel indignant and unfairly treated. The only mistake I made was displaying the packet by placing on a lunch table filled with fourth graders. Duh! From the perspective of an adult with a lot of life experience, it is obvious that the entire incident was predictable. As a little boy it wasn't lost on me that I was culpable, my mistake was not being more discreet. I wasn't showing off with my mouth wash but it was what I was expecting to be accused of at the parent's conference.

In a way, it was a surprising time, and place. I am certain that the lack of any formal policy was an attitude of protecting people's privacy. Every boy had a pocket knife from first grade to graduation, and a volunteer staff tallied the attendance slips from every class, every hour from middle school on. If a student didn't show up for school or missed being accounted for, the parents were immediately contacted. This included sending a police officer to inform a parent that wasn't available by phone. A vestage of the Federal government's role in assuring that we had a uniform, educated society, everyone was required to complete 9th grade, special powers were granted to enforce compliance.

The reasons behind the total flip flop has more to do with all of the other students than the child wise beyond her or his years with respect to the medicines they take. As long as kids needing to carry medicines are discreet when getting them out and taking them, there shouldn't be any issues. It is wonderful news.

Kids who are accustomed to taking medicines and dealing with a chronic illness shouldn't be punished for the actions of other kids. The sad truth of this is the very children that for whatever reasons would be inclined to take one kid's medicines and perpetrate an incident are the same children that will harass a kid who goes to the nurse to get and take their medicines.

It is a wonderful idea to educate and diffuse any questions and concerns at a school. It is also possible to inadvertently mark your child for others who weren't possible to enlighten, maybe one or two and that may be enough. Kids go through so many stages and I don't remember any that didn't have times when they were overly self conscious. I would prefer to see these policies protecting the rights of the patients. We can baby proof a home but I find the tendency to baby proof the world revolting.

Thanks for bringing the Hopefully, Good News,

LL

 

[Printer]

The law in the Commonwealth of Massachusetts, specifically allows CF students to have and self administer any and all CF Drugs.

If anyone needs a copy of this law, let me know and I'll get the Chapter and Section number.

Bill

 

[randford]

Thanks for the info! Some states already allow self-administering enzymes but if your state does not...find out what you can do to make a difference to students with CF!

The law in the Commonwealth of Massachusetts, specifically allows CF students to have and self administer any and all CF Drugs.

If anyone needs a copy of this law, let me know and I'll get the Chapter and Section number.

Bill