school issues (long posting)

February 16, 2003

Hi all, just checking in to update you all with some news about ,

first of all, we just found out that my grandmothers sister's child who is 45

yrs old has cystic fibrosis. Apparently he has been healthy most of his life

up until now, he has the same gene mutations as , so that's good news,

's doctor did tell us that would live to be past his 30's so

this gives us hope. Well, anyway, I really need some assurance, was

accepted to a program through the state of Florida, called early intervention

program due to this illness and adhd. He will be starting school in March. I

have already put his 504 plan together and we are just getting ready to

finish his I E P plan. I took the liberty to put together workbooks for

's teacher, school nurse and the principal, which basically explains

just about everything about what his needs are. ( by the way thankyou Bev for

the info) I have even gone as far as highlighting the important parts. Here

is the biggie, I am worried that will have a hard time adjusting,

awhile back (about 2 yrs) went to preschool and he cried every day,

he would just latch on to me and it was hard for me, usually I left crying,

well it didn't help that I was pregnant at that time with his brother, I was

really hormonal lol. At that time we didn't know had this disease so

maybe that had to do a lot with it. I've got butterflies, I have so many

questions that I want and need answered. I like to know what's going on and I

like to be prepared and organized. will be seeing a behaviorist in

March due to symptoms of adhd, I am hoping that he will be able to give me

some insight on what to expect and so forth, I have a lot on my mind, I

talked to my husband but he really doesn't know what to say, My family says

that I'm rushing into school, he is almost five years old. His

doctors believe that he needs structure and a routine and going to school

will be able to accomplish that, I agree. How did you all as parents deal

with your child going to school for the very first time? and with cystic

fibrosis on top of that. Did your kids cry? Did you cry? Please could you all

give me some insight, I really would appreciate it.

Thanks, , mommy of 4yrs 10 months old w/cf and adhd and 19

months old no/cf

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