Re: Stressing Out and Need Advice On 504 Plans

June 28, 2006

Carey, please don't stress about the school issue, it's hard but not impossible!

Alot depends on conversations with people at the school that she will be

attending. We never had to have a formal plan in place the entire time that PJ

was in elementary school. We did have to bring in letters from his doctors at

Childrens hospital explaining that he had a periodic fever that he was being

treated for and that he would have frequent absences. That was it! Our school

had a 10 day limit on absences for the year before the child automatically fails

but the limit is null and void for medical reasons.

Keeping caught up with classwork is a whole other issue but again, it can be

dealt with by dealing with teachers and if needed, the counselor or principal.

At the start of each school year, we would request a 'Child study " during which

I explained to all of his teachers, at once, about his disease and what they

could expect as far as him getting sick at school and potential problems with

absences due to illness or doctor visits. They were very receptive, offering to

elimimate " nonsense " makeup work, etc.

It worked out really well for us considering that in thosae first few years

he missed an avarage of 30 days of school per year. It hepled that PJ was very

bright and caught up quickly with his classes. The only bad effect was that at

one point, he was kicked out of the program for gifted kids because he was

struggling to make up some regular classwork!

Again, alot will depend on the staff at your child's school. I think that

for the most part, if you just talk to them and explain the situation, they will

be more than happy to work with you. I know that this isn't always the case,

poor Fran had some difficulty with staff at ph's school but in the end, your

child has a medical condition and they HAVE TO deal with it!

Pat, mom to PJ, 13yo, FMF, Virginia

---------------------------------

Sneak preview the all-new .com. It's not radically different. Just

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June 29, 2006

Carey.

I too am a single Mom. I have always been a single mom and it was quite

difficult with such a sick child. Our bond though is tremendous!

I had to have an actual IEP implemented. 504 or IEP.. When the child goes to

school.. The topic of absent days needs to be immediately addressed. Here in

NC we have 20 days and they tell us the same thing. We go to NIH every 6

months for a week at a time. thus 10 days off the bat!!

Things are very different when you have an IEP or 504. The child can advance

if they keep up.

Now depending on your child and their ease of absorbing is another issue.

ph is definitely having problems. especially with reading. He also has

difficulty with writing formation. On top of poor fine motor and being a boy

(LOL). boys tend to have poor fine motors skills. he is lefty and he has

focusing and distraction issues along with sensory issues especially to

sound and light.

Once you get the 504 implemented or if you later see you need an IEP, you

need to REALLY keep in contact. (use notes etc) with the teacher and any

special ed people who may be part of the team.

My son got something called an ESY this year. Extended school year. He ONLY

received 7 hours, an hour a week with a special ed teacher to MAINTAIN

reading level. He JUST made a level 16 which is required to advance to

second grade. Now I know other kids here at the site do not seem to struggle

as much as ph. but ph has issues related to a specific mutation,

CIAS1 causing the focusing issues. But being out for any of these kids is

going to be a challenge.

I also am struggling having him with a tutor 2 hrs a week.. Also to help the

same issues. It is EXPENSIVE. $40.00 an hr and that is a GOOD rate.

Our IEP team met June 12 and we will meet the second week in September, JUST

before we head off to NIH for a week!

Go into the meeting with ALL her medical records. IF you kept a log of her

onset of fevers and joint pain bring that too. If she has difficulty

focusing or concentrating because of the fevers or pain.. Let them know

immediately. Complete any paperwork for administering medications at

school.. After her first year if you see her struggling with mental

challenges caused BY the fevers, you can ask for an IEP which OPENS the door

tremendously. Here you NEED your pediatrician to help because it needs to

state the medical condition is AFFECTING her learning ability. Once this is

implemented. YOU get many many open doors. Federal funds come in for your

child. Write to me off line for details.

Fran A Bulone

Mom to ph 7 yrs old

Waxhaw, NC

Owner & Moderator Group

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June 29, 2006

Carey ,

I am An Intensive special needs teacher. One off the things I have done is I

wrote out some things that might help parents when they start the process of a

504 or IEP. Please find these in the files section. If you have any other ?'s

I will try to help.

Stressing Out and Need Advice On 504 Plans

Hi Everyone

I have a question for those of you with children in school. I am

registering Hannah to start school and I am feeling a little

overwhelmed. While filling out her paperwork their was a sheet in

their about absentism. The policy of the school is if your child

misses more than 15 days in a calendar year they will not be advanced

to the next grade and parents may be subject to paying a fine of

$50.00 for each day missed. Well here is where I am a little

troubled. We have to fly to NIH atleast every 3 months. Each trip

is about five days. I can not be flexiable about this because NIH is

the only place that we can find hope. On top of that I am thinking

about all the days she may miss because she is just to sick to go. I

realize there will be days that she will have to go even if she isn't

feeling her best but I also know there are a lot of days that I would

have to question her ability to function. Now I know I will need a

504 plan but what do you do about all the missed days? How do I keep

her from getting behind and keep the school from letting her fall

through the cracks? I am really stressing about this. Hannah's

fevers have gotten better since she started the Singulair but so far

her joint pain is still in my opinion out of control. Unfortunately

I am a single mom with 2 jobs so home schooling is not really an

option. If anyone could give me some advise I really would

appreciate it. I have to turn her paperwork in tomarrow and they

said I would have to make an appointment with their 504 Coordinator.

I want to make sure when I go to the appointment I have all my ducks

in a row and know what to expect so I can ensure Hannah gets

everything that is available to her.

Thank you,

Carey mom to Hannah Rose 4 years old (Clinical HIDS)

ville, TN

June 29, 2006

Hi Carey,

I am a teacher as well as a parent of two children (10 and 3) with , of

which one has severe food allergies also. When my oldest one started school we

had her deemed medically fragile. Her regular pediatrician filled out the form.

After 15 days absent in a school year our system requires a doctors note for

each absence. This was no problem, there was a standing order at my daughters

peds. office for an absenteeism note per my request. Her ped knew I wouldn't

abuse this because I am a teacher and she knows that I have to work too. When

my youngest child begins school this year I am requiring the school to have a

medical plan for her due to her food allergies. This is an option for you too.

Holly White