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Michele, I think my son Tim's iep states developmental delays as one of the criteria. He is blind in left eye, but has 20/20 in right, has a slight hearing loss in left ear, and right is fine. But has serious gross and fine motor delays as well as speech, also organization skills are low, etc. maybe this would help? I don't know all the ins and outs of this just know luckily we have helpful people who know what they are doing from the start. He attends a regular pre-k program, but started in pre-k handicapped, and has always had services from the commission of the blind and visually impared in addition to school, private pt still comes to the house and hippo-therapy is private also. I've rambled again--must be this pregnancy thing.

, mom to Timmy 5 charge, keegan 2, baby #3 still unnamed, and wife to pat (getting impatient w/ me about name)

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Colleen-

I don't recall anyone answering your question about ka's IEP meeting

having not yet occurred and her birthday being literally right around

the corner. (BTW-- I hope you have a wonderful celebration!) I'm not

sure what to say except that I would find your state protection and

advocacy agency and get some help. What will happen to ka's 0-3

therapy services (I'm assuming she's getting plenty) as of her

birthday?? Legally, the school is obligated to provide those services

starting on Oct. 5. The Early Intervention system is no longer

obligated after her birthday. So... seems to me she could be left

hanging. And what has been the hold up with the school district?? I

think you need to find out and see what you can do to get the ball

rolling. If you need more help, ask again. There are legal timelines

to insure that there is an IEP ready to be implemented on the third

birthday.

We had Aubrie's initial IEP meeting on Monday. We spent 5 hours and

didn't get past the diagnosis. Very frustrating. I'm too drained to

even go into it. And so overwhelmed with questions I wouldn't know

where to start. It doesn't have to be a difficult process, but it sure

has to start. Good luck getting it going!

Michele W

Aubrie's mom

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five hours to get past the diagnosis? This seems rather strange. Let me

know if I can help with questions, etc.

Tim Hartshorne (father of )

Michele Westmaas wrote:

> Colleen-

> I don't recall anyone answering your question about ka's IEP meeting

> having not yet occurred and her birthday being literally right around

> the corner. (BTW-- I hope you have a wonderful celebration!) I'm not

> sure what to say except that I would find your state protection and

> advocacy agency and get some help. What will happen to ka's 0-3

> therapy services (I'm assuming she's getting plenty) as of her

> birthday?? Legally, the school is obligated to provide those services

> starting on Oct. 5. The Early Intervention system is no longer

> obligated after her birthday. So... seems to me she could be left

> hanging. And what has been the hold up with the school district?? I

> think you need to find out and see what you can do to get the ball

> rolling. If you need more help, ask again. There are legal timelines

> to insure that there is an IEP ready to be implemented on the third

> birthday.

>

> We had Aubrie's initial IEP meeting on Monday. We spent 5 hours and

> didn't get past the diagnosis. Very frustrating. I'm too drained to

> even go into it. And so overwhelmed with questions I wouldn't know

> where to start. It doesn't have to be a difficult process, but it sure

> has to start. Good luck getting it going!

>

> Michele W

> Aubrie's mom

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

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OPPPSS sent this to Tim instead of the group by mistake...

Jacque,

I did a quick search of IDEA and couldn't find anything on if it said

you

had to specify times... BUT.... it seems to me that they would

have to if

nothing else to get the federal reimbursement... I don't think

anything

like that would stand up to a challenge at all. Do to the fact that

they

by fed law have to specify goals and objectives with a plan on how

those

goals are to be met, seems to me that any plan worth a darn would

have to

have times included.. I know they have to in the state of CA. I'll do

some more looking but right now I have to get Aari to the hosp for

blood

tests and x-rays.. finally got my darling HMO to get me a new endo

that

will a least look into GHD instead of one that says " yup he's short,

yup

he's little and yup he's not growing right... oh well.... "

Casey

Mom to Dawn 21 HH, Ken 11 ADHD, 8 CHARGE

ICQ 728514 AIM ZeeCasey

CHARGE Web Page:

http://www.geocities.com/Heartland/1220

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Exactly -- in order to be eligible for placement at the School for the Deaf you

need a primary dx of hearing impairment. Since she has multiple dx's and one is

not obviously more important than the others, we were hoping to get hearing as

primary. We're not certain that the School for the Deaf would be the best

placement, but we wanted to keep it as an option as we determine needs, goals,

etc

before choosing placement. Unfortunately, I don't think the team is going to

agree with that because her hearing tests are all inconclusive. She's never

" passed " a hearing test, but we don't know for sure the extent of her loss or if

there really is any. If there is, it's likely to be unilateral and she's

compensating for it beautifully.

Michele W

Aubrie's mom

sdoolit272@... wrote:

> In a message dated 10/3/2000 11:23:03 PM Central Daylight Time,

> west@... writes:

>

> << We spent 5 hours and

> didn't get past the diagnosis.>>

> Michele,

>

> Are you talking about her diagnosis or were you trying to come up with a

> label that fits her diagnosis so that she is able to get the maximum services?

>

> Sheryl, Mom to Mitch 14 and 14 CHARGE

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

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In a message dated 10/3/2000 11:23:03 PM Central Daylight Time,

west@... writes:

<< We spent 5 hours and

didn't get past the diagnosis.>>

Michele,

Are you talking about her diagnosis or were you trying to come up with a

label that fits her diagnosis so that she is able to get the maximum services?

Sheryl, Mom to Mitch 14 and 14 CHARGE

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on 10/5/00 4:20 AM, Michele Westmaas at west@... wrote:

> Exactly -- in order to be eligible for placement at the School for the Deaf

> you

> need a primary dx of hearing impairment. Since she has multiple dx's and one

> is

> not obviously more important than the others, we were hoping to get hearing as

> primary. We're not certain that the School for the Deaf would be the best

> placement, but we wanted to keep it as an option as we determine needs, goals,

> etc

> before choosing placement. Unfortunately, I don't think the team is going to

> agree with that because her hearing tests are all inconclusive. She's never

> " passed " a hearing test, but we don't know for sure the extent of her loss or

> if

> there really is any. If there is, it's likely to be unilateral and she's

> compensating for it beautifully.

>

> Michele W

> Aubrie's mom

>

>

> sdoolit272@... wrote:

>

>> In a message dated 10/3/2000 11:23:03 PM Central Daylight Time,

>> west@... writes:

>>

>> << We spent 5 hours and

>> didn't get past the diagnosis.>>

>> Michele,

>>

>> Are you talking about her diagnosis or were you trying to come up with a

>> label that fits her diagnosis so that she is able to get the maximum

>> services?

>>

>> Sheryl, Mom to Mitch 14 and 14 CHARGE

>>

>> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

>> 20-22, 2001. Information will be available first in CHARGE Accounts, the

>> CHARGE Syndrome Foundation's newsletter. "

>>

>> For information about the CHARGE Syndrome

>> Foundation or to become a member (and get the newsletter)

>> please contact marion@... or visit

>> the CHARGE Syndrome Foundation web page

>> at http://www.chargesyndrome.org

>

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

>

There's something I absolutely do not understand. My child has bilateral

colobomas and is hearing impaired (born with " mild " impairment in right ear,

severe in left; we learned on Monday after a new ABR that she's now

profoundly deaf in both ears). We have fought for years to maintain an

educational diagnosis of deafblindness.

THAT is our primary diagnosis. I do not understand why this is not

universal across all states. What am I missing here? This is a hot, hot

issue in our state. Martha

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I agree with you whole hartedly. I remember when I went out to the

mandarin (chinese resterant) with Angie and Nic. A lot of people did

stare, I think it did bother a family on another table. But they

kinda left. but the Mandarin people were nice and it did not bother

them.

I also remember saying that once when she took kennedy to a

restarant the manager asked if that was a new way of eating or

something.

Chantelle

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