Back to school meetings

[Rebjane]

Had the back to school meet with my daughter's teacher. Gave the School and CF booklet; letter from the CF doc and my daughter already has a 504 plan so we should be good to go. I like to meet the teacher ahead of time as I have found most to have misconceptions about CF. Usually give the rundown on the intense amount of treatments my daughter does just so that they know before breakfast to get ready for school she has already done an hour of treatments. Let them know to push her scholastically. ya know the usual.

I got home from the meeting and I just feel down, sad. I don't talk about the CF that much anymore and to have to say everything just makes me realize all we do. I get this when i bring my daughter to clinic sometimes, especially at her yearly. Can anyone relate?

 

[Aboveallislove]

sending you a mommy hug. I think we all feel that way from different things. I'll often get the wave when we're doing nighttime treatments in the summer and we see all the families out walking with their kids while our little guy is strapped to his vest and breathing in meds. But then he'll snuggle in a little tighter and it'll pass. But it sucks. It always always sucks. another big hug.

 

[Ratatosk]

Now that DS is getting older, I worry more about others treating him different because of CF. During our meetings we stress that he's a normal child, go over the 504, importance of enzymes and reiterate that he's a normal child who shouldn't have any limits. I'm a little more gun shy this year because we had a difficult teacher last year. Add to that DS has overheard others (family) talk about cf, him, his health and he worries.

It bothers me more that we're so strapped for time in the evenings -- get home, treatments, supper, homework, playtime and we're always rushed.

 

[AleksandraKaczynska]

I also had a first meeting and also gave the teacher booklets, had a talk - turned out - 6 teachers showed up and wanted to know - I had more booklets so I gave them out, gave booklets to give to parents and also gave a what you call a 504 plan made basing on yours as such things are not done here - so I guess I might be the first even - the teachers where thrilled and said that they are sorry others do not this or even try to hide their kids cf - as was the case with an older girl in this school - when the teacher noticed her port - she then asked what is wrong and got information the girl has cf - and nothing more...so thank all of you for the idea with this 504 plan and wish Asia luck

 

[ccsalema]

Oh, wow, I love our annual school meeting. We do a lot of fundraising for the CFF and oftentimes make movies to chronicle our sons summer or sinus surgery or what have you. They're graphic usually and explain what he does on a daily basis and show things that people never see--pre-PICC placement, breathing treatments, hospitalizations, not in a bad way but more to show the side nobody sees. We show this to the school team, all the teachers in his particular grade, guidance couselor, cafeteria people, maintenance people--whoever shows up. Then we ask for their help keeping him well since they are typically with him more during waking hours than we are once school starts. We explain what is potentially dangerous for him (compost piles, standing water, sick kids, old air conditioners, etc, the whole weird list)...then we ask them to brainstorm ways that we haven't thought of that can help him while at school. All people we have ever met are always eager to help--if you explain and teach what CF is and ask for help people generally rise to the challenge...

Team work, team work, team work....

Good luck!

 

[AleksandraKaczynska]

ccsalema - great idea-short movies - I'll see if their are inetersed in this form of showing them what it's like with cf while outside of school. They where willing help and learn and I asked our cf fund to help - they will go to this school to teach them about cf. I'll try to be at that also. I guess it's a good idea to make short movies - but I'll talk to them first there will aslo be a meeting - meeting from my cf fund - to educate teachers - so I'll see what comes next.
There might be a cf girl two grades higher - they do not know since they had no contact with her parents since spring. The girl is in bad shape and was going to have home teaching - but they had no news so far - hard to tell why - the parents did everything to hide her cf and where not willing to go out to the school team and talk to them about cf and the girls needs.
Thursday I'm going to have to go out and talk to parents on a parents meeting - and then we'll see what information is needed more.