For Fran Bulone ...

[Guest guest]

Hi Fran,

I was wondering if you could help me with something. As you may

recall your son ph and my son Mason both have the same CIAS1

gene mutation at 703K ... well, I also recalled at some point in

time you mentioning your son having some difficulty in school. Do I

recall this correctly? If so, how did you go about getting him

help? Did the school have to do an IEP for him, or how do you go

about getting him better services in school specialized to his

needs? Do I also recall you mentioning the NIH had one of their

specialists run some tests in regards to his educational needs? If

so, I also could use some advice on that and how to go about getting

them to help out.

Mason is really struggling in school. I have to wonder if he's

dyslexic or something ... its like his brain just doesn't get the

signal to his hands. He has great difficulty with fine motor

skills, like writing, zippering his coat up and down, putting on his

socks and shoes, tying his shoes, etc. and it takes him really long

to write anything and everything on paper. Now you ask him a

question and he's very quick, no time at all he responds with the

correct answer ... but getting his hands to write it out and it

takes really long, like he's gotta process it for awhile before he

can write it. That may sound really dumb/weird, but that is how he

is.

He also is having lots of difficulty with reading comprehension. He

can read really great ... he's in the top reading level in his

class. But when it comes to then answering questions (via writing

it down) to a story he just read, he will sit there for minutes on

end just to recall the story so he can write it down. He said he

forgets.

Mason hasn't fevered in probably a year now, but as you may recall

when he was younger he fevered very regularly and generally always

above 103, but lower than 106. But I would think after years of

that, it had to have some lasting effects on his brain.

He's in second grade, and his Teacher works so hard to keep him up

with the rest of his class ... but I think she's feeling drained,

exhausted, etc. too because he does require so much more of her.

I would really appreciate hearing what you've been through with

ph again so I know where to start. I'm really at a loss. Right

now we have a Section 504 plan set up for him, but that isn't what

he needs at this point ... I think he needs an IEP.

Thanks so much. I remember you being such a wealth of knowledge ...

I also haven't seen you post in awhile and was wondering how you and

ph are doing.

Heidi

Mommy of Mason, 8 years old, (CIAS1 gene mutation at 703K, unknown

PFS, post sigmoid colon resection, numerous colon surgeries, asthma,

GERD, mickey button surgery 9/07)

Amber, 12 years old, hearing loss and asthma

, 15 years old, Crohn's disease diagnosed 7/08

and happily married to

[Guest guest]

Heidi,

I was reading your post to Fran. We just added Other Health Issues

to our sons current IEP. The school is then responsible for

educating our son to meet his medical needs. Our son is seeing an

Occupational Therapist and she has noted some visual perception

issues. My sister who works in a school in another state is going to

test our son for dyslexia. She does this testing in her school. I

asked my school to do it and they gave me a little run around and

wanted to test him for learning disabilities. They are NOT the

same. Having a child in school for dyslexia is costly for a school

and they just want to have a general learning disability that won't

fit your childs need. After my sister tests him over Christmas she

said we will have more ground to address the school on this issue if

he is showing he has dyslexia. Keep PACER in mind if you have not

heard of them. They are at www.pacer.org They know all the laws

and have no problem advocating for your child. They are located in

MN, but they are for anyone to use. Fortunately for MN residents

they will drive to IEP meetings if they are available and the schools

in MN do not want PACER involved because they know they have to bow

down to them. PACER will help you get what your child needs if he

meets the criteria. If a school is not following the 504 plan or

IEP, watch out because PACER will eat them up. I have called PACER

several times just to ask questions and they mail you information for

free on what the laws are based on your question. Best wishes, Lynn