Re: A big YIPPIE today (!!!)

[Guest guest]

Toni all of your recent posts are such great news to hear. First about

Faith and the more detailed update you gave on what she is doing now

vs. before -and also on how amazing the EI system in PA is. I know

that NY also has an incredible worth moving to the area EI system in

place -just what you would expect with my coauthor Dr. Agin as the

Medical Director there of course!

What does EI recommend on how to deal with the IU there? If you

speak with Mauri who runs Children's Apraxia Network and Robin you

can get a list of parents and professionals running into walls with

the IU there -and the stories are just terrible. The best I can do

is put the word out because knowledge is power -and they can't get

away with what they are doing to so many kids. Some give up and

just move. Robin's talked about moving to Florida, and I know that

Mauri Blefeld who runs Children's Apraxia Network in PA is another

planned to move to Florida. (Florida has more than good weather

Disney and dolphins, Flipper and Miami, it has the McKay Scholarship

http://www.opportunityschools.org )

I know from Robin that even legal threats don't seem to budge the IU

in PA to do the right thing. The 7 day threat may just give them

heads up they have another week to push paper and figure out how to

stall you more. As Robin said they spend more money on legal

fighting back then on trying to give a FAPE. Who knows -

perhaps they get so many legal threats that at this point -what's

one more. That 'one more' to us is everything -it's our babies.

It's a great idea for all you guys there to talk.

So again, since the EI there is so good. Can you guys together as a

group speak with the EI to form a plan on how to fight the IU to

help all of you help the older children that already fell through

the cracks of the system there -and keep the little ones from ever

falling in the first place?

In the long run -since money is the bottom line for some -by helping

the children with appropriate early intervention, you will save not

just the children -but money.

=====

[Guest guest]

The EI and the therapists from UCP are giving parents who have kids turning

3 soon some information on how to handle the IU. Basically they're telling

parents to do the things I've done to get some action out of them. They're

now recommending The Complete IEP Guide for parents to really find out what

thier rights are, giving parents a list of places that do private

evaluations and are either inexpensive, take payments, and one of them will

waive the costs for low income parents trying to get a second opinion to

fight the IU.

they're also giving parents the phone numbers for the school district

administrators and school psychologists. In some districts, they even have

numbers for school board members who will go to bat for them at the school

district to get the IU off their duffs and do something.

I think that one, and pulling out the IEP guide (bookmarked and highlighted)

is what helped me get the IU to really listen and do something. When I hand

delivered the letter to the IU about returning my phone calls, I had also

delivered letters to the school psychologist and the school district

superintendant. In those letters I simply stated that the IU wasn't

responding to me or doing anything to help my daughter, and since the

ultimate responsibility under the law falls on the school district I wanted

to know what thier alternative plan was to get my daughter the help she

needed to be able to get a decent education.

the day I delivered that letter the school district superintendant was on

the phone with me finding out who I was trying to reach at the IU, the

details on Hope, her condition, her therapy and what we were trying to get

changed, making sure he had all the information on the paperwork the school

had me fill out was acccurate (they had me fill out some papers about Hope

so they have the special needs kids on record and can refer back to them).

He was apologizing for no one getting in touch with me and said he'd get to

the bottom of it quickly. When I pushed him he did say there is an

alternative they have set with the hospital that they will move Hope into if

they have to, but they try and use the IU as much as possible because of

funding issues.

It was the next morning the IU was on the phone with me, a week later we had

her IEP meeting to change what I was trying to get changed. When I called in

February to get her class changed to the hearing imparied class, per her

preschool teacher's suggestion, I had a phone call back the next day and her

meeting was set up a week later. The school district really got on their

case and I havent' had a problem since.

According to my mother and sister going after the school district was

sneaky, underhanded, and " b****y " , but under the law it's the school

district's responsibility to provide for these children. If the people they

have providing those services aren't doing thier job, then the school needs

to fix it or come up with another plan. A lot of the parents I know locally

spend a lot of time fighting with the IU and feel like thier banging their

heads against the wall. The ones who can afford it usually give up and go

with private therapy. The ones who can't afford it split thier time

fighting with the IU and fighting with thier private insurance companies

trying to get private therapy paid for. Some of the ones who were really

having a hard time with the IU followed what I did and they got the same

response. The school district made the IU do their job.

The schools dont want to spend more money then they have to, especially when

they have the IU there to do that job for them. they count on the laws

being confusing and parents either not understanding them or just being

totally unaware of their childrens' rights. It's sad that a school would

feel that ignorance is better, but in this case for them it is since then

the IU can sweep the kids under the carpet and no one goes after the

schools.

I'm not sure if getting a decent response from the IU is because the IU here

is more decent than some others (which I doubt) or if it's the school

district's doing. I'd be more willing to think it's the school district.

Toni

[ ] Re: A big YIPPIE today (!!!)

Toni all of your recent posts are such great news to hear. First about

Faith and the more detailed update you gave on what she is doing now

vs. before -and also on how amazing the EI system in PA is. I know

that NY also has an incredible worth moving to the area EI system in

place -just what you would expect with my coauthor Dr. Agin as the

Medical Director there of course!

What does EI recommend on how to deal with the IU there? If you

speak with Mauri who runs Children's Apraxia Network and Robin you

can get a list of parents and professionals running into walls with

the IU there -and the stories are just terrible. The best I can do

is put the word out because knowledge is power -and they can't get

away with what they are doing to so many kids. Some give up and

just move. Robin's talked about moving to Florida, and I know that

Mauri Blefeld who runs Children's Apraxia Network in PA is another

planned to move to Florida. (Florida has more than good weather

Disney and dolphins, Flipper and Miami, it has the McKay Scholarship

http://www.opportunityschools.org )

I know from Robin that even legal threats don't seem to budge the IU

in PA to do the right thing. The 7 day threat may just give them

heads up they have another week to push paper and figure out how to

stall you more. As Robin said they spend more money on legal

fighting back then on trying to give a FAPE. Who knows -

perhaps they get so many legal threats that at this point -what's

one more. That 'one more' to us is everything -it's our babies.

It's a great idea for all you guys there to talk.

So again, since the EI there is so good. Can you guys together as a

group speak with the EI to form a plan on how to fight the IU to

help all of you help the older children that already fell through

the cracks of the system there -and keep the little ones from ever

falling in the first place?

In the long run -since money is the bottom line for some -by helping

the children with appropriate early intervention, you will save not

just the children -but money.

=====

[Guest guest]

Toni wrote " they're also giving parents the phone numbers for the school

district

administrators and school psychologists. In some districts, they even have

numbers for school board members who will go to bat for them at the school

district to get the IU off their duffs and do something "

LOLLLLLLLLLLLLLLL.......the Director of Special Education here sent out a flyer,

telling parents to visit a session at a local food store, which sold natural

products. That by serving " whole, natural foods, your child's ADHD symptoms

will be unrecognizable " . My ADHD network phone was JAMMED with parents that

were outraged. <sigh> So much for special ed here in PA.....

I've done countless IEPs for parents, however an IEP for an ADHD kid is surely

different than that of an apraxic, SID or speech disabled child. Fact is

this......they don't want to give you services. End of story. They did SOOOOOO

many things that were clearly not in Jordan's best interest. Toni, please don't

get fooled. These are NOT nice people. They are NOT acting in your child's

best interest. They are acting in THEIRS. Even at my insistance, they kept

Jordan in a classroom of children who are 2 years his junior. The SLP there is

absolutely INCOMPETENT....we won't even address the unprofessional

part......TOTALLY AND COMPLETELY INCOMPETENT. And that we can prove by tapes of

Jordan speaking. It really chaps my butt that these people collect a salary and

amazing benefits, while parents are fighting and struggling to get what's best

for these children......and having to pay out of their own pockets for services

OUTSIDE OF THE IU to get the help these children need, while they laugh at how

stupid we are for not fighting them. Well guess what, the party is now

over.....we're going to not only fight them, but go public with it. And until

that darling 24 year old SLP who " knows everything there is to know about speech

disorders " is no longer employed by this state, I won't stop. I'm more than

angry now, and the more I see parents get buffaloed (as Jordan would say,

" buckaloed " ) it just inflames me to no end. DO NOT GET FOOLED......I'm sure

Robin can back me up on this one.

So now my fight begins, my child has been at a wonderful place called

" Theraplay " , here in Montgomery/Bucks County, PA.....It is speech, OT, and

listening pediatric therapy, in a PLAY environment. AMAZING.....He has made

more progress in one month, than in 2 years at the IU. His OT starts this week,

and with the addition of Hippotherapy, I believe he will be on his way. My

oldest (PRE-pre med) is working with him every day....and has begun documenting

progresses and we are tracking a lot of what's working, other than what these

very lovely and talented SLP's from Theraplay are doing. I'm relieved to see him

turning the corner. And I'm sickened that people can literally " tinkle in your

eye and tell you it's raining " and because they work for the state, get away

with it. <shaking head>

YES, Jordan has come a long way. But I SURELY don't attribute it to THEM. He

would have most likely developed BETTER in a typical preschool, with supports,

which they denied him. His growth would have been more age appropriate, and I

believe his language and use thereof would also have been better.

OK, Im off the soapbox....

I had an amazing opportunity brought to me, by a pediatric eye doc that I know,

and love. He has a group that is entirely made up of professionals for LD

children. I've been asked to join that group. Details to follow <after I take

off my boxing gloves with PA>

~Karyn

[ ] Re: A big YIPPIE today (!!!)

The EI and the therapists from UCP are giving parents who have kids turning

3 soon some information on how to handle the IU. Basically they're telling

parents to do the things I've done to get some action out of them. They're

now recommending The Complete IEP Guide for parents to really find out what

thier rights are, giving parents a list of places that do private

evaluations and are either inexpensive, take payments, and one of them will

waive the costs for low income parents trying to get a second opinion to

fight the IU.

they're also giving parents the phone numbers for the school district

administrators and school psychologists. In some districts, they even have

numbers for school board members who will go to bat for them at the school

district to get the IU off their duffs and do something.

I think that one, and pulling out the IEP guide (bookmarked and highlighted)

is what helped me get the IU to really listen and do something. When I hand

delivered the letter to the IU about returning my phone calls, I had also

delivered letters to the school psychologist and the school district

superintendant. In those letters I simply stated that the IU wasn't

responding to me or doing anything to help my daughter, and since the

ultimate responsibility under the law falls on the school district I wanted

to know what thier alternative plan was to get my daughter the help she

needed to be able to get a decent education.

the day I delivered that letter the school district superintendant was on

the phone with me finding out who I was trying to reach at the IU, the

details on Hope, her condition, her therapy and what we were trying to get

changed, making sure he had all the information on the paperwork the school

had me fill out was acccurate (they had me fill out some papers about Hope

so they have the special needs kids on record and can refer back to them).

He was apologizing for no one getting in touch with me and said he'd get to

the bottom of it quickly. When I pushed him he did say there is an

alternative they have set with the hospital that they will move Hope into if

they have to, but they try and use the IU as much as possible because of

funding issues.

It was the next morning the IU was on the phone with me, a week later we had

her IEP meeting to change what I was trying to get changed. When I called in

February to get her class changed to the hearing imparied class, per her

preschool teacher's suggestion, I had a phone call back the next day and her

meeting was set up a week later. The school district really got on their

case and I havent' had a problem since.

According to my mother and sister going after the school district was

sneaky, underhanded, and " b****y " , but under the law it's the school

district's responsibility to provide for these children. If the people they

have providing those services aren't doing thier job, then the school needs

to fix it or come up with another plan. A lot of the parents I know locally

spend a lot of time fighting with the IU and feel like thier banging their

heads against the wall. The ones who can afford it usually give up and go

with private therapy. The ones who can't afford it split thier time

fighting with the IU and fighting with thier private insurance companies

trying to get private therapy paid for. Some of the ones who were really

having a hard time with the IU followed what I did and they got the same

response. The school district made the IU do their job.

The schools dont want to spend more money then they have to, especially when

they have the IU there to do that job for them. they count on the laws

being confusing and parents either not understanding them or just being

totally unaware of their childrens' rights. It's sad that a school would

feel that ignorance is better, but in this case for them it is since then

the IU can sweep the kids under the carpet and no one goes after the

schools.

I'm not sure if getting a decent response from the IU is because the IU here

is more decent than some others (which I doubt) or if it's the school

district's doing. I'd be more willing to think it's the school district.

Toni

[Guest guest]

All I can say is sorry you're going through that whole mess with your IU. I

can only speak from experience with the IU here and the school district I

live in. They both responded to my letters and phone calls, and are now

doing everything they need to for Hope. I had a little discussion, I cant

even call it a disagreement, with the IU last week about therapy during the

summer. Hope's IEP is written up for speech therapy twice a week, 30

minutes each session, from 2-11-04 until 9-30-04. There is no notation in

there about a summer break. But her therapists were telling me they werent'

working during the summer. After our discussion, Hope is getting her

therapy all summer. That's what was written, that's what she gets. Her

therapists are still not working during the summer, but they found a

therapist who IS working during the summer. And Holly used to work with

Hope so it's nothing new. Holly is here every week for Faith's speech

therapy anyway. :-)

Yeah they dont want to give anyone services, after all it costs them money

to do it. But what my school district quickly found out that what was in

THEIR best interests was to do what was in HOPE'S best interests. Otherwise

they had one mad momma on thier hands. And we all know if momma aint

happy....nobody's happy.

Toni

Re: [ ] Re: A big YIPPIE today (!!!)

LOLLLLLLLLLLLLLLL.......the Director of Special Education here sent out a

flyer, telling parents to visit a session at a local food store, which sold

natural products. That by serving " whole, natural foods, your child's ADHD

symptoms will be unrecognizable " . My ADHD network phone was JAMMED with

parents that were outraged. <sigh> So much for special ed here in PA.....