Jump to content
RemedySpot.com
Sign in to follow this  
Guest guest

Re: Introduction: Ruby's father

Rate this topic

Recommended Posts

Guest guest

Hi ,

Welcome to the world of the painstakingly slow crawl of dealing with

the school distict. Seems like there are just continuing delays and

testing and indecisiveness, etc.

I too just survived our 504 meeting. Finally, after 6 years, we

have a sound field system written in the 504. I am too thrilled for

words.

We basically reviewed all the tests from last year and determined

that we had no educational delays that would warrant special ed

status, and thus an IEP. I still have some concerns, but over all,

he has progressed in the areas of concern, and his new teacher feels

like he will be just fine. (He is a July 30 baby, so is always the

youngest in his class) So, I am going with that, for the moment.

Most joyfully, I report that he is doing a great job of advocating

for himself in the classroom, choosing seating that allows him oral

access to information, moving to maintain speach reading etc. The

teacher has a workshop model of teaching, which it turns out is just

fabulous for my son, and she uses tons of visual aids when teaching,

as well as writes the homework on the board, and the daily

schedule. She has them do the daily planner writing at the begining

of the day, instead of the end when they are all tired, but my son

exceptionally so. So all in all he is off to a great start.

I have to say, that the teacher has not used the sound field system

yet (45 days after school has started, although it was installed

over the summer, it was not officially in the 504 plan, thus no plan

to show the teacher how it worked) and after discussing all the

succeses my son was having, thought there was no need to use it, nor

write it in the 504 plan. THANKFULLY, our TOD consultant was there,

and she quickly discussed the need for it, to reduce auditory

fatigue, etc. I also produced a copy of Carol Flexer's article for

her to review. The team concurred and wrote it in! Now, I will

wait and see if it will be used or not. I really hope she tries it,

as I think she will see what a great tool it can be.

Anyhow, just thought I would share my 504 experience. Can't say

enough how glad I am to have a Hearing Loss Professional not

employed by the school district to consult and advise.

And a happy new school year to all....

Tracey

>

> Hello Again-

>

> I just wanted to thank everyone again for the replies and ideas.

And

> let you know that I survived the IEP/504 meeting, although did not

get

> resolution. As it happens, land law allows that the school

system

> does not have to accept medical evaluations from " outside "

sources, no

> matter the quality of that source. So we ordered a new audiology

and

> speech assessment done by the school system and so are delayed in

> making decisions. The special ed representatives did say they see

> Ruby as a 504 kid, because she is so bright and not behind

> academically. While that is a common arguement, it is clear that

IDEA

> applies whenever the diability affects learning and provides for

> appropriate education, so many courts have held that using simply

> academic level is not the issue. What is appropriate education for

> Ruby includes more than just being able to score well on their

> ratings. She should be progressing consistently and also making

gains

> in things that are age appropriate like participating and

initiating

> interaction with peers, gathering skills for independent living,

etc.

> Really, anything that has a curricular impact relates to

learning, it

> seems to me. We'll see how it all shakes out, but I was pleased

that

> the members of the IEP team that were present were very nice to

work

> with and at least willing to think about my ideas. Of course, the

> head of the team was not there (with no prior notification or

reason

> given), so we'll see how it goes when he arrives at the next

meeting

> (75 days hence!).

>

> In the meantime, it is an interesting process. When I have new

> information about audiology and speech, I am sure I will be back

here

> looking for more input. Until then, I continue to appreciate

reading

> all your posts and seeing what a great community of advocates is

out

> there looking out for their kids.

>

> Thanks again,

> , father to Ruby (and Ethan, age 16 months... who is going to

> give *me* hearing loss if he doesn't start chilling out soon!)

>

Share this post


Link to post
Share on other sites
Guest guest

Hi Tracey - congratulations on the start of a good year! I do worry,

though, about the teacher not using the soundfield system. Sounds like

she's out of compliance and needs to work with it til she gets it!

Barbara

traceyandynathen wrote:

> Hi ,

> Welcome to the world of the painstakingly slow crawl of dealing with

> the school distict. Seems like there are just continuing delays and

> testing and indecisiveness, etc.

>

>

> I too just survived our 504 meeting. Finally, after 6 years, we

> have a sound field system written in the 504. I am too thrilled for

> words.

>

> We basically reviewed all the tests from last year and determined

> that we had no educational delays that would warrant special ed

> status, and thus an IEP. I still have some concerns, but over all,

> he has progressed in the areas of concern, and his new teacher feels

> like he will be just fine. (He is a July 30 baby, so is always the

> youngest in his class) So, I am going with that, for the moment.

>

> Most joyfully, I report that he is doing a great job of advocating

> for himself in the classroom, choosing seating that allows him oral

> access to information, moving to maintain speach reading etc. The

> teacher has a workshop model of teaching, which it turns out is just

> fabulous for my son, and she uses tons of visual aids when teaching,

> as well as writes the homework on the board, and the daily

> schedule. She has them do the daily planner writing at the begining

> of the day, instead of the end when they are all tired, but my son

> exceptionally so. So all in all he is off to a great start.

>

> I have to say, that the teacher has not used the sound field system

> yet (45 days after school has started, although it was installed

> over the summer, it was not officially in the 504 plan, thus no plan

> to show the teacher how it worked) and after discussing all the

> succeses my son was having, thought there was no need to use it, nor

> write it in the 504 plan. THANKFULLY, our TOD consultant was there,

> and she quickly discussed the need for it, to reduce auditory

> fatigue, etc. I also produced a copy of Carol Flexer's article for

> her to review. The team concurred and wrote it in! Now, I will

> wait and see if it will be used or not. I really hope she tries it,

> as I think she will see what a great tool it can be.

>

> Anyhow, just thought I would share my 504 experience. Can't say

> enough how glad I am to have a Hearing Loss Professional not

> employed by the school district to consult and advise.

>

> And a happy new school year to all....

> Tracey

>

>

>

>

>

>

>

>

>

>

>> Hello Again-

>>

>> I just wanted to thank everyone again for the replies and ideas.

>>

> And

>

>> let you know that I survived the IEP/504 meeting, although did not

>>

> get

>

>> resolution. As it happens, land law allows that the school

>>

> system

>

>> does not have to accept medical evaluations from " outside "

>>

> sources, no

>

>> matter the quality of that source. So we ordered a new audiology

>>

> and

>

>> speech assessment done by the school system and so are delayed in

>> making decisions. The special ed representatives did say they see

>> Ruby as a 504 kid, because she is so bright and not behind

>> academically. While that is a common arguement, it is clear that

>>

> IDEA

>

>> applies whenever the diability affects learning and provides for

>> appropriate education, so many courts have held that using simply

>> academic level is not the issue. What is appropriate education for

>> Ruby includes more than just being able to score well on their

>> ratings. She should be progressing consistently and also making

>>

> gains

>

>> in things that are age appropriate like participating and

>>

> initiating

>

>> interaction with peers, gathering skills for independent living,

>>

> etc.

>

>> Really, anything that has a curricular impact relates to

>>

> learning, it

>

>> seems to me. We'll see how it all shakes out, but I was pleased

>>

> that

>

>> the members of the IEP team that were present were very nice to

>>

> work

>

>> with and at least willing to think about my ideas. Of course, the

>> head of the team was not there (with no prior notification or

>>

> reason

>

>> given), so we'll see how it goes when he arrives at the next

>>

> meeting

>

>> (75 days hence!).

>>

>> In the meantime, it is an interesting process. When I have new

>> information about audiology and speech, I am sure I will be back

>>

> here

>

>> looking for more input. Until then, I continue to appreciate

>>

> reading

>

>> all your posts and seeing what a great community of advocates is

>>

> out

>

>> there looking out for their kids.

>>

>> Thanks again,

>> , father to Ruby (and Ethan, age 16 months... who is going to

>> give *me* hearing loss if he doesn't start chilling out soon!)

>>

>>

>

>

>

>

>

>

>

> All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

>

Share this post


Link to post
Share on other sites
Guest guest

Hi Tracey - congratulations on the start of a good year! I do worry,

though, about the teacher not using the soundfield system. Sounds like

she's out of compliance and needs to work with it til she gets it!

Barbara

traceyandynathen wrote:

> Hi ,

> Welcome to the world of the painstakingly slow crawl of dealing with

> the school distict. Seems like there are just continuing delays and

> testing and indecisiveness, etc.

>

>

> I too just survived our 504 meeting. Finally, after 6 years, we

> have a sound field system written in the 504. I am too thrilled for

> words.

>

> We basically reviewed all the tests from last year and determined

> that we had no educational delays that would warrant special ed

> status, and thus an IEP. I still have some concerns, but over all,

> he has progressed in the areas of concern, and his new teacher feels

> like he will be just fine. (He is a July 30 baby, so is always the

> youngest in his class) So, I am going with that, for the moment.

>

> Most joyfully, I report that he is doing a great job of advocating

> for himself in the classroom, choosing seating that allows him oral

> access to information, moving to maintain speach reading etc. The

> teacher has a workshop model of teaching, which it turns out is just

> fabulous for my son, and she uses tons of visual aids when teaching,

> as well as writes the homework on the board, and the daily

> schedule. She has them do the daily planner writing at the begining

> of the day, instead of the end when they are all tired, but my son

> exceptionally so. So all in all he is off to a great start.

>

> I have to say, that the teacher has not used the sound field system

> yet (45 days after school has started, although it was installed

> over the summer, it was not officially in the 504 plan, thus no plan

> to show the teacher how it worked) and after discussing all the

> succeses my son was having, thought there was no need to use it, nor

> write it in the 504 plan. THANKFULLY, our TOD consultant was there,

> and she quickly discussed the need for it, to reduce auditory

> fatigue, etc. I also produced a copy of Carol Flexer's article for

> her to review. The team concurred and wrote it in! Now, I will

> wait and see if it will be used or not. I really hope she tries it,

> as I think she will see what a great tool it can be.

>

> Anyhow, just thought I would share my 504 experience. Can't say

> enough how glad I am to have a Hearing Loss Professional not

> employed by the school district to consult and advise.

>

> And a happy new school year to all....

> Tracey

>

>

>

>

>

>

>

>

>

>

>> Hello Again-

>>

>> I just wanted to thank everyone again for the replies and ideas.

>>

> And

>

>> let you know that I survived the IEP/504 meeting, although did not

>>

> get

>

>> resolution. As it happens, land law allows that the school

>>

> system

>

>> does not have to accept medical evaluations from " outside "

>>

> sources, no

>

>> matter the quality of that source. So we ordered a new audiology

>>

> and

>

>> speech assessment done by the school system and so are delayed in

>> making decisions. The special ed representatives did say they see

>> Ruby as a 504 kid, because she is so bright and not behind

>> academically. While that is a common arguement, it is clear that

>>

> IDEA

>

>> applies whenever the diability affects learning and provides for

>> appropriate education, so many courts have held that using simply

>> academic level is not the issue. What is appropriate education for

>> Ruby includes more than just being able to score well on their

>> ratings. She should be progressing consistently and also making

>>

> gains

>

>> in things that are age appropriate like participating and

>>

> initiating

>

>> interaction with peers, gathering skills for independent living,

>>

> etc.

>

>> Really, anything that has a curricular impact relates to

>>

> learning, it

>

>> seems to me. We'll see how it all shakes out, but I was pleased

>>

> that

>

>> the members of the IEP team that were present were very nice to

>>

> work

>

>> with and at least willing to think about my ideas. Of course, the

>> head of the team was not there (with no prior notification or

>>

> reason

>

>> given), so we'll see how it goes when he arrives at the next

>>

> meeting

>

>> (75 days hence!).

>>

>> In the meantime, it is an interesting process. When I have new

>> information about audiology and speech, I am sure I will be back

>>

> here

>

>> looking for more input. Until then, I continue to appreciate

>>

> reading

>

>> all your posts and seeing what a great community of advocates is

>>

> out

>

>> there looking out for their kids.

>>

>> Thanks again,

>> , father to Ruby (and Ethan, age 16 months... who is going to

>> give *me* hearing loss if he doesn't start chilling out soon!)

>>

>>

>

>

>

>

>

>

>

> All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

>

Share this post


Link to post
Share on other sites
Guest guest

Hi Tracey - congratulations on the start of a good year! I do worry,

though, about the teacher not using the soundfield system. Sounds like

she's out of compliance and needs to work with it til she gets it!

Barbara

traceyandynathen wrote:

> Hi ,

> Welcome to the world of the painstakingly slow crawl of dealing with

> the school distict. Seems like there are just continuing delays and

> testing and indecisiveness, etc.

>

>

> I too just survived our 504 meeting. Finally, after 6 years, we

> have a sound field system written in the 504. I am too thrilled for

> words.

>

> We basically reviewed all the tests from last year and determined

> that we had no educational delays that would warrant special ed

> status, and thus an IEP. I still have some concerns, but over all,

> he has progressed in the areas of concern, and his new teacher feels

> like he will be just fine. (He is a July 30 baby, so is always the

> youngest in his class) So, I am going with that, for the moment.

>

> Most joyfully, I report that he is doing a great job of advocating

> for himself in the classroom, choosing seating that allows him oral

> access to information, moving to maintain speach reading etc. The

> teacher has a workshop model of teaching, which it turns out is just

> fabulous for my son, and she uses tons of visual aids when teaching,

> as well as writes the homework on the board, and the daily

> schedule. She has them do the daily planner writing at the begining

> of the day, instead of the end when they are all tired, but my son

> exceptionally so. So all in all he is off to a great start.

>

> I have to say, that the teacher has not used the sound field system

> yet (45 days after school has started, although it was installed

> over the summer, it was not officially in the 504 plan, thus no plan

> to show the teacher how it worked) and after discussing all the

> succeses my son was having, thought there was no need to use it, nor

> write it in the 504 plan. THANKFULLY, our TOD consultant was there,

> and she quickly discussed the need for it, to reduce auditory

> fatigue, etc. I also produced a copy of Carol Flexer's article for

> her to review. The team concurred and wrote it in! Now, I will

> wait and see if it will be used or not. I really hope she tries it,

> as I think she will see what a great tool it can be.

>

> Anyhow, just thought I would share my 504 experience. Can't say

> enough how glad I am to have a Hearing Loss Professional not

> employed by the school district to consult and advise.

>

> And a happy new school year to all....

> Tracey

>

>

>

>

>

>

>

>

>

>

>> Hello Again-

>>

>> I just wanted to thank everyone again for the replies and ideas.

>>

> And

>

>> let you know that I survived the IEP/504 meeting, although did not

>>

> get

>

>> resolution. As it happens, land law allows that the school

>>

> system

>

>> does not have to accept medical evaluations from " outside "

>>

> sources, no

>

>> matter the quality of that source. So we ordered a new audiology

>>

> and

>

>> speech assessment done by the school system and so are delayed in

>> making decisions. The special ed representatives did say they see

>> Ruby as a 504 kid, because she is so bright and not behind

>> academically. While that is a common arguement, it is clear that

>>

> IDEA

>

>> applies whenever the diability affects learning and provides for

>> appropriate education, so many courts have held that using simply

>> academic level is not the issue. What is appropriate education for

>> Ruby includes more than just being able to score well on their

>> ratings. She should be progressing consistently and also making

>>

> gains

>

>> in things that are age appropriate like participating and

>>

> initiating

>

>> interaction with peers, gathering skills for independent living,

>>

> etc.

>

>> Really, anything that has a curricular impact relates to

>>

> learning, it

>

>> seems to me. We'll see how it all shakes out, but I was pleased

>>

> that

>

>> the members of the IEP team that were present were very nice to

>>

> work

>

>> with and at least willing to think about my ideas. Of course, the

>> head of the team was not there (with no prior notification or

>>

> reason

>

>> given), so we'll see how it goes when he arrives at the next

>>

> meeting

>

>> (75 days hence!).

>>

>> In the meantime, it is an interesting process. When I have new

>> information about audiology and speech, I am sure I will be back

>>

> here

>

>> looking for more input. Until then, I continue to appreciate

>>

> reading

>

>> all your posts and seeing what a great community of advocates is

>>

> out

>

>> there looking out for their kids.

>>

>> Thanks again,

>> , father to Ruby (and Ethan, age 16 months... who is going to

>> give *me* hearing loss if he doesn't start chilling out soon!)

>>

>>

>

>

>

>

>

>

>

> All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

>

Share this post


Link to post
Share on other sites
Guest guest

Thanks Jill.

I completely agree and am prepared to do so and am just thrilled to

finally have it in writing so I have a leg to stand on! I truly am

not terrible worried about it in his class now, but am terrified of

what could happen next year in Middle School without it. A big

reason why I wanted it added this year.

Side note: I wish I could join you all on your fun day!

>

>

> In a message dated 9/27/2006 6:28:18 P.M. Eastern Standard Time,

> tracey@... writes:

>

> Now, I will

> wait and see if it will be used or not. I really hope she tries

it,

> as I think she will see what a great tool it can be.

>

>

>

>

>

> If she doesn't use it, then the school district is out of

compliance. So, if

> she doesn't " try " it soon, then I'd be making noise, and keeping

track of

> every day it's not used after having been written into the

official plan. Wait

> and watch is okay for the moment, but if the teacher ignores the

equipment for

> much longer, then I'd be making some loud noises.

>

> Best -- Jill

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

Actully, since yesterday was the first day of having it written into

the plan, today is the first day that she would be out of

compliance, and I am prepared to give her a day or two to get it

going. I can't wait to get home to ask my son if she used it today

or not. Honestly, after the TOD jumped in and explained things

further, I think she was committed to giving it a try. I know I can

force the issue, but this team is so cooperative (although rather

ignorant) that I hate to have that antagonism going unless I have

to. But I am not afraid to do what I have to do. I just don't want

everyone crossing the street when they see me coming, like they do

Jill! (just kidding) And I really do just love the 5th grade

teacher we have. She just pulsates with energy and excitement about

all the things the 5th graders are learning and my son just clicked

with her right away and loves school again. Such a huge relief

after the emotional, traumatic last year. I really think she will

absorb all the new information we have given her and embrace doing

everything she can to help my son. Gosh, I knew about my son's

hearing loss for almost 4 years before I figured out that I needed

to do anything to help him, and I am his Mom. But I have her on the

crash course and expect her to get it by about a week.

Thank you, Thank you to you all again. I know I wuoldn't be

informed and ready to tackle all of this with out your incredibley

generous sharing of your experiences.

And darn Yahoo for not having spell check!

Tracey

> >

> >> Hello Again-

> >>

> >> I just wanted to thank everyone again for the replies and

ideas.

> >>

> > And

> >

> >> let you know that I survived the IEP/504 meeting, although did

not

> >>

> > get

> >

> >> resolution. As it happens, land law allows that the school

> >>

> > system

> >

> >> does not have to accept medical evaluations from " outside "

> >>

> > sources, no

> >

> >> matter the quality of that source. So we ordered a new

audiology

> >>

> > and

> >

> >> speech assessment done by the school system and so are delayed

in

> >> making decisions. The special ed representatives did say they

see

> >> Ruby as a 504 kid, because she is so bright and not behind

> >> academically. While that is a common arguement, it is clear

that

> >>

> > IDEA

> >

> >> applies whenever the diability affects learning and provides for

> >> appropriate education, so many courts have held that using

simply

> >> academic level is not the issue. What is appropriate education

for

> >> Ruby includes more than just being able to score well on their

> >> ratings. She should be progressing consistently and also

making

> >>

> > gains

> >

> >> in things that are age appropriate like participating and

> >>

> > initiating

> >

> >> interaction with peers, gathering skills for independent

living,

> >>

> > etc.

> >

> >> Really, anything that has a curricular impact relates to

> >>

> > learning, it

> >

> >> seems to me. We'll see how it all shakes out, but I was

pleased

> >>

> > that

> >

> >> the members of the IEP team that were present were very nice to

> >>

> > work

> >

> >> with and at least willing to think about my ideas. Of course,

the

> >> head of the team was not there (with no prior notification or

> >>

> > reason

> >

> >> given), so we'll see how it goes when he arrives at the next

> >>

> > meeting

> >

> >> (75 days hence!).

> >>

> >> In the meantime, it is an interesting process. When I have new

> >> information about audiology and speech, I am sure I will be

back

> >>

> > here

> >

> >> looking for more input. Until then, I continue to appreciate

> >>

> > reading

> >

> >> all your posts and seeing what a great community of advocates

is

> >>

> > out

> >

> >> there looking out for their kids.

> >>

> >> Thanks again,

> >> , father to Ruby (and Ethan, age 16 months... who is going

to

> >> give *me* hearing loss if he doesn't start chilling out soon!)

> >>

> >>

> >

> >

> >

> >

> >

> >

> >

> > All messages posted to this list are private and confidential.

Each post is the intellectual property of the author and therefore

subject to copyright restrictions.

> >

Share this post


Link to post
Share on other sites
Guest guest

ha ha ha - I'm thinking " and proud of it! " .

So how far is Norwalk - that's Connecticut? - from Hanover NH. I guess

I could Mapquest it...

JillcWood@... wrote:

>

> In a message dated 9/27/2006 7:49:50 P.M. Eastern Standard Time,

> tracey@... writes:

>

> I just don't want

> everyone crossing the street when they see me coming, like they do

> Jill! (just kidding)

>

>

>

>

> Hey, I worked really hard to be this disliked, dare I say " despised " by so

> many. It's not easy, ya know, it's taken lots of hard work to get me where I

> am today.

>

> LOL!!

> Jill

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

Actually, this is yet another good line offered by ...let me guess....Baltimore

County/City, Harford County? Actually, IDEA supercedes COMAR regs (land

regs). There is absolutely NOTHING that says that the school system must test

your child. Did they provide legal citations proving these alleged statements

of fact. I can see by your email that you're at Hopkins. If you'd like someone

who has battled this for nearly 16 years with various Counties as an advocate

for my son and for others with special ed needs, mainly hearing loss, I'd be

happy to discuss the " reality " of the law vs the often willful misapplication of

the law by the local school systems. I can also provide you with the strategy

with which to battle these inaccuracies. If you'd like, I can give you my phone

number off list as I'm in Towson

-------------- Original message --------------

Hello Again-

I just wanted to thank everyone again for the replies and ideas. And

let you know that I survived the IEP/504 meeting, although did not get

resolution. As it happens, land law allows that the school system

does not have to accept medical evaluations from " outside " sources, no

matter the quality of that source. So we ordered a new audiology and

speech assessment done by the school system and so are delayed in

making decisions. The special ed representatives did say they see

Ruby as a 504 kid, because she is so bright and not behind

academically. While that is a common arguement, it is clear that IDEA

applies whenever the diability affects learning and provides for

appropriate education, so many courts have held that using simply

academic level is not the issue. What is appropriate education for

Ruby includes more than just being able to score well on their

ratings. She should be progressing consistently and also making gains

in things that are age appropriate like participating and initiating

interaction with peers, gathering skills for independent living, etc.

Really, anything that has a curricular impact relates to learning, it

seems to me. We'll see how it all shakes out, but I was pleased that

the members of the IEP team that were present were very nice to work

with and at least willing to think about my ideas. Of course, the

head of the team was not there (with no prior notification or reason

given), so we'll see how it goes when he arrives at the next meeting

(75 days hence!).

In the meantime, it is an interesting process. When I have new

information about audiology and speech, I am sure I will be back here

looking for more input. Until then, I continue to appreciate reading

all your posts and seeing what a great community of advocates is out

there looking out for their kids.

Thanks again,

, father to Ruby (and Ethan, age 16 months... who is going to

give *me* hearing loss if he doesn't start chilling out soon!)

Share this post


Link to post
Share on other sites
Guest guest

, this is an article that I got from another list that deals with

special ed law... I think it addresses part of your situation. Let me know

how it goes. I think we will be facing similar problems with

Elias.

Bonnie

--------------------------------------------------------------------------------\

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

Denial of Eligibility Because of Gifted Intellectual Ability and/or Lack of

Failure

The U.S. Department of Education, in a written response to questions from

the Learning Disabilities Association of North Carolina, stated that

" ...each child who is evaluated for a suspected learning disability must be

measured against his or her own expected performance, and not against some

arbitrary general standard. " As required by Part B regulation (34 CFR

§§300.540-300.543), the multidisciplinary evaluation team is responsible for

determining if a severe discrepancy exists between a student's ability and

performance. Under Part B of IDEA and Part B regulations there are no

" exclusions based on intelligence level in determining eligibility. " In

other words, a student cannot be excluded from consideration of eligibility

for special education services solely on the basis of a high IQ; no child's

IQ can be too high for that child to be considered for eligibility for

special education services -- even an intellectually gifted student may be

considered for eligibility for special education.

In order to qualify as having a specific learning disability, the student,

according to Part B of IDEA and Part B regulations, must have a severe

discrepancy between achievement and intellectual ability " in one or more of

the following areas: oral expression, listening comprehension, written

expression, basic reading skill, reading comprehension, mathematics

calculation, or mathematics reasoning. " Intellectual ability is determined

by administration of intelligence or IQ test(s). Achievement is determined

by administration of tests designed to measure basic reading skill and

comprehension, math computational and reasoning skills, and the ability of

the child to express his/her ideas in writing. Oral expression and listening

comprehension are generally determined by giving speech and language tests.

Scores earned on achievement and IQ tests are then compared.

In order to be eligible for special education services, the

multidisciplinary team must determine if the student has an " impairment " or

disability which " adversely affects educational performance " 34 CFR §300.7

(B) (1) - (B) (13). In a letter to M. Lybarger, Ed.D., dated

September 14, 1990, the Department of Education described " educational

performance " as different for each child, " determined on an individual

basis, " and " includ(ing) non-academic and academic skills. " In other words,

a student with suspected learning disabilities must need special education

and related services in order to qualify for those services.

A multidisciplinary team may find a child has a specific learning disability

if " the child does not achieve commensurate with his or her age and ability

levels in one or more of the areas listed in paragraph (a) (2) of this

section, when provided with learning experiences appropriate for the child's

age and ability levels ... " 34 CFR §300.541 (a) (1). The Department of

Education, in its letter to LDA of North Carolina, wrote that it is

" generally " appropriate for the multidisciplinary team to include in its

written report (to determine eligibility) information regarding " outside or

extra " instructional help or support which " may indicate the child's current

educational achievements reflects the service augmentation, not what the

child's achievement would be without such help. " Such information should be

considered by the team in deciding if the child has " a severe discrepancy

between achievement and ability that is not correctable without special

education and related services. " If, for example, a student with an IQ of

125 and significantly lower achievement scores maintains passing or even

exemplary grades, the team should consider whether or not the student

achieves only because of special assistance or support. If the student

receives no special help, the multidisciplinary team might conclude that

student would not need special education. If, on the other hand, the student

has tutoring several times a week, works for three to five hours each night

on homework with parental assistance, and must have extra time to complete

tests in order to pass or maintain a certain grade level, that student might

be considered to have a " specific learning disability. " His/her grades may

reflect all the assistance the student is getting rather than the student's

actual achievement level.

(Reference: Letter of Clarification from Hehir, Director, Office of

Special Education Programs, to Ms. M. Lillie, and Felton,

Ph.D., Learning Disabilities Association of North Carolina, Inc., dated

April 5, 1995. Portions of the letter have been bolded for emphasis.)

Share this post


Link to post
Share on other sites
Guest guest

, this is an article that I got from another list that deals with

special ed law... I think it addresses part of your situation. Let me know

how it goes. I think we will be facing similar problems with

Elias.

Bonnie

--------------------------------------------------------------------------------\

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

Denial of Eligibility Because of Gifted Intellectual Ability and/or Lack of

Failure

The U.S. Department of Education, in a written response to questions from

the Learning Disabilities Association of North Carolina, stated that

" ...each child who is evaluated for a suspected learning disability must be

measured against his or her own expected performance, and not against some

arbitrary general standard. " As required by Part B regulation (34 CFR

§§300.540-300.543), the multidisciplinary evaluation team is responsible for

determining if a severe discrepancy exists between a student's ability and

performance. Under Part B of IDEA and Part B regulations there are no

" exclusions based on intelligence level in determining eligibility. " In

other words, a student cannot be excluded from consideration of eligibility

for special education services solely on the basis of a high IQ; no child's

IQ can be too high for that child to be considered for eligibility for

special education services -- even an intellectually gifted student may be

considered for eligibility for special education.

In order to qualify as having a specific learning disability, the student,

according to Part B of IDEA and Part B regulations, must have a severe

discrepancy between achievement and intellectual ability " in one or more of

the following areas: oral expression, listening comprehension, written

expression, basic reading skill, reading comprehension, mathematics

calculation, or mathematics reasoning. " Intellectual ability is determined

by administration of intelligence or IQ test(s). Achievement is determined

by administration of tests designed to measure basic reading skill and

comprehension, math computational and reasoning skills, and the ability of

the child to express his/her ideas in writing. Oral expression and listening

comprehension are generally determined by giving speech and language tests.

Scores earned on achievement and IQ tests are then compared.

In order to be eligible for special education services, the

multidisciplinary team must determine if the student has an " impairment " or

disability which " adversely affects educational performance " 34 CFR §300.7

(B) (1) - (B) (13). In a letter to M. Lybarger, Ed.D., dated

September 14, 1990, the Department of Education described " educational

performance " as different for each child, " determined on an individual

basis, " and " includ(ing) non-academic and academic skills. " In other words,

a student with suspected learning disabilities must need special education

and related services in order to qualify for those services.

A multidisciplinary team may find a child has a specific learning disability

if " the child does not achieve commensurate with his or her age and ability

levels in one or more of the areas listed in paragraph (a) (2) of this

section, when provided with learning experiences appropriate for the child's

age and ability levels ... " 34 CFR §300.541 (a) (1). The Department of

Education, in its letter to LDA of North Carolina, wrote that it is

" generally " appropriate for the multidisciplinary team to include in its

written report (to determine eligibility) information regarding " outside or

extra " instructional help or support which " may indicate the child's current

educational achievements reflects the service augmentation, not what the

child's achievement would be without such help. " Such information should be

considered by the team in deciding if the child has " a severe discrepancy

between achievement and ability that is not correctable without special

education and related services. " If, for example, a student with an IQ of

125 and significantly lower achievement scores maintains passing or even

exemplary grades, the team should consider whether or not the student

achieves only because of special assistance or support. If the student

receives no special help, the multidisciplinary team might conclude that

student would not need special education. If, on the other hand, the student

has tutoring several times a week, works for three to five hours each night

on homework with parental assistance, and must have extra time to complete

tests in order to pass or maintain a certain grade level, that student might

be considered to have a " specific learning disability. " His/her grades may

reflect all the assistance the student is getting rather than the student's

actual achievement level.

(Reference: Letter of Clarification from Hehir, Director, Office of

Special Education Programs, to Ms. M. Lillie, and Felton,

Ph.D., Learning Disabilities Association of North Carolina, Inc., dated

April 5, 1995. Portions of the letter have been bolded for emphasis.)

Share this post


Link to post
Share on other sites
Guest guest

, this is an article that I got from another list that deals with

special ed law... I think it addresses part of your situation. Let me know

how it goes. I think we will be facing similar problems with

Elias.

Bonnie

--------------------------------------------------------------------------------\

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

Denial of Eligibility Because of Gifted Intellectual Ability and/or Lack of

Failure

The U.S. Department of Education, in a written response to questions from

the Learning Disabilities Association of North Carolina, stated that

" ...each child who is evaluated for a suspected learning disability must be

measured against his or her own expected performance, and not against some

arbitrary general standard. " As required by Part B regulation (34 CFR

§§300.540-300.543), the multidisciplinary evaluation team is responsible for

determining if a severe discrepancy exists between a student's ability and

performance. Under Part B of IDEA and Part B regulations there are no

" exclusions based on intelligence level in determining eligibility. " In

other words, a student cannot be excluded from consideration of eligibility

for special education services solely on the basis of a high IQ; no child's

IQ can be too high for that child to be considered for eligibility for

special education services -- even an intellectually gifted student may be

considered for eligibility for special education.

In order to qualify as having a specific learning disability, the student,

according to Part B of IDEA and Part B regulations, must have a severe

discrepancy between achievement and intellectual ability " in one or more of

the following areas: oral expression, listening comprehension, written

expression, basic reading skill, reading comprehension, mathematics

calculation, or mathematics reasoning. " Intellectual ability is determined

by administration of intelligence or IQ test(s). Achievement is determined

by administration of tests designed to measure basic reading skill and

comprehension, math computational and reasoning skills, and the ability of

the child to express his/her ideas in writing. Oral expression and listening

comprehension are generally determined by giving speech and language tests.

Scores earned on achievement and IQ tests are then compared.

In order to be eligible for special education services, the

multidisciplinary team must determine if the student has an " impairment " or

disability which " adversely affects educational performance " 34 CFR §300.7

(B) (1) - (B) (13). In a letter to M. Lybarger, Ed.D., dated

September 14, 1990, the Department of Education described " educational

performance " as different for each child, " determined on an individual

basis, " and " includ(ing) non-academic and academic skills. " In other words,

a student with suspected learning disabilities must need special education

and related services in order to qualify for those services.

A multidisciplinary team may find a child has a specific learning disability

if " the child does not achieve commensurate with his or her age and ability

levels in one or more of the areas listed in paragraph (a) (2) of this

section, when provided with learning experiences appropriate for the child's

age and ability levels ... " 34 CFR §300.541 (a) (1). The Department of

Education, in its letter to LDA of North Carolina, wrote that it is

" generally " appropriate for the multidisciplinary team to include in its

written report (to determine eligibility) information regarding " outside or

extra " instructional help or support which " may indicate the child's current

educational achievements reflects the service augmentation, not what the

child's achievement would be without such help. " Such information should be

considered by the team in deciding if the child has " a severe discrepancy

between achievement and ability that is not correctable without special

education and related services. " If, for example, a student with an IQ of

125 and significantly lower achievement scores maintains passing or even

exemplary grades, the team should consider whether or not the student

achieves only because of special assistance or support. If the student

receives no special help, the multidisciplinary team might conclude that

student would not need special education. If, on the other hand, the student

has tutoring several times a week, works for three to five hours each night

on homework with parental assistance, and must have extra time to complete

tests in order to pass or maintain a certain grade level, that student might

be considered to have a " specific learning disability. " His/her grades may

reflect all the assistance the student is getting rather than the student's

actual achievement level.

(Reference: Letter of Clarification from Hehir, Director, Office of

Special Education Programs, to Ms. M. Lillie, and Felton,

Ph.D., Learning Disabilities Association of North Carolina, Inc., dated

April 5, 1995. Portions of the letter have been bolded for emphasis.)

Share this post


Link to post
Share on other sites
Guest guest

This is great. Thanks very much. I am on my way out of town, but am

going to print it and read it and may reply more on Monday.

Thanks!

>

> , this is an article that I got from another list that deals with

> special ed law... I think it addresses part of your situation. Let

me know

> how it goes. I think we will be facing similar problems with

> Elias.

>

> Bonnie

>

>

--------------------------------------------------------------------------------\

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

> Denial of Eligibility Because of Gifted Intellectual Ability and/or

Lack of

> Failure

>

>

> The U.S. Department of Education, in a written response to questions

from

> the Learning Disabilities Association of North Carolina, stated that

> " ...each child who is evaluated for a suspected learning disability

must be

> measured against his or her own expected performance, and not

against some

> arbitrary general standard. " As required by Part B regulation (34 CFR

> §§300.540-300.543), the multidisciplinary evaluation team is

responsible for

> determining if a severe discrepancy exists between a student's

ability and

> performance. Under Part B of IDEA and Part B regulations there are no

> " exclusions based on intelligence level in determining eligibility. " In

> other words, a student cannot be excluded from consideration of

eligibility

> for special education services solely on the basis of a high IQ; no

child's

> IQ can be too high for that child to be considered for eligibility for

> special education services -- even an intellectually gifted student

may be

> considered for eligibility for special education.

>

> In order to qualify as having a specific learning disability, the

student,

> according to Part B of IDEA and Part B regulations, must have a severe

> discrepancy between achievement and intellectual ability " in one or

more of

> the following areas: oral expression, listening comprehension, written

> expression, basic reading skill, reading comprehension, mathematics

> calculation, or mathematics reasoning. " Intellectual ability is

determined

> by administration of intelligence or IQ test(s). Achievement is

determined

> by administration of tests designed to measure basic reading skill and

> comprehension, math computational and reasoning skills, and the

ability of

> the child to express his/her ideas in writing. Oral expression and

listening

> comprehension are generally determined by giving speech and language

tests.

> Scores earned on achievement and IQ tests are then compared.

>

> In order to be eligible for special education services, the

> multidisciplinary team must determine if the student has an

" impairment " or

> disability which " adversely affects educational performance " 34 CFR

§300.7

> (B) (1) - (B) (13). In a letter to M. Lybarger, Ed.D., dated

> September 14, 1990, the Department of Education described " educational

> performance " as different for each child, " determined on an individual

> basis, " and " includ(ing) non-academic and academic skills. " In other

words,

> a student with suspected learning disabilities must need special

education

> and related services in order to qualify for those services.

>

> A multidisciplinary team may find a child has a specific learning

disability

> if " the child does not achieve commensurate with his or her age and

ability

> levels in one or more of the areas listed in paragraph (a) (2) of this

> section, when provided with learning experiences appropriate for the

child's

> age and ability levels ... " 34 CFR §300.541 (a) (1). The Department of

> Education, in its letter to LDA of North Carolina, wrote that it is

> " generally " appropriate for the multidisciplinary team to include in its

> written report (to determine eligibility) information regarding

" outside or

> extra " instructional help or support which " may indicate the child's

current

> educational achievements reflects the service augmentation, not what the

> child's achievement would be without such help. " Such information

should be

> considered by the team in deciding if the child has " a severe

discrepancy

> between achievement and ability that is not correctable without special

> education and related services. " If, for example, a student with an

IQ of

> 125 and significantly lower achievement scores maintains passing or even

> exemplary grades, the team should consider whether or not the student

> achieves only because of special assistance or support. If the student

> receives no special help, the multidisciplinary team might conclude that

> student would not need special education. If, on the other hand, the

student

> has tutoring several times a week, works for three to five hours

each night

> on homework with parental assistance, and must have extra time to

complete

> tests in order to pass or maintain a certain grade level, that

student might

> be considered to have a " specific learning disability. " His/her

grades may

> reflect all the assistance the student is getting rather than the

student's

> actual achievement level.

>

> (Reference: Letter of Clarification from Hehir, Director,

Office of

> Special Education Programs, to Ms. M. Lillie, and

Felton,

> Ph.D., Learning Disabilities Association of North Carolina, Inc., dated

> April 5, 1995. Portions of the letter have been bolded for emphasis.)

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

Hi Bonnie-

She is about 10 months out of the second transplant. They do the

neuropsych eval before so they have a baseline to evaluate the late

effect impacts of exactly the things you mention (TBI, etc.). No

doubt that the consent form for the TBI, with possibility of cognitive

effects was the hardest to sign of the zillions I have signed. But it

was the best option we had and so we sucked it up and did it. One

nice thing is that the preliminary data from these levels of radiation

have shown not actual dimunition in IQ in the small cohort they have

followed for over five years. Without checking the protocol, I am not

100% sure of the timing for the next eval. I think it is at two years

and I know that it is not valid to redo the eval before one year

(having to do with the testing itself). At this point, there is

nothing medically to be done to prevent the effects, so in a sense

there is no rush.

As for hearing loss, she saw plenty of cisplatin and carboplatin as

well as the TBI and a few weeks of gentamicin and vancomicin which

are, obviously, potentiall problematic. But only carbo once

transplant started. Amazingly, she had no measureable hearing loss

before transplant. The nurse practioneer actually thought she had the

wrong audiology report. But in transplant she had carbo, TBI and some

gent, plus maybe the previous stuff kicked in, so what can ya do?

Interesting about Elias's late walking and low tone with no clear

reason. Ruby was also in Early Intervention/Infants and Toddler, but

the transition to regular IDEA/IEP stuff got botched up because she

was hospitalized and in active treatment. We had an IEP in place, but

it was canceled since we couldn't participate in any meetings and Ruby

was in Philadelphia. I think I could have dealt with that and made

things easier for the transition, but I was, obviously, pretty focused

elsewhere. I have had many unchartible thoughts about the special ed

folks here in Baltimore through our five years in the system! But

it's a new day and I am hoping for better!

Gotta run.

Thanks-

> >

> > Hi Bonnie-

> >

> > Thanks for the reply and hello. In answer to your questions: Yes, I

> > did find this list through you note on the ACOR Neuroblastoma list.

> > Thanks. I have been reading this one a bit, but have been so busy and

> > it is all such a new " language " to me, that I haven't been able to

> > absorb it. But now I think it is time I get going up the learning

> > curve about this hearing loss stuff!

> >

> >

> >

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

Hi Bonnie-

She is about 10 months out of the second transplant. They do the

neuropsych eval before so they have a baseline to evaluate the late

effect impacts of exactly the things you mention (TBI, etc.). No

doubt that the consent form for the TBI, with possibility of cognitive

effects was the hardest to sign of the zillions I have signed. But it

was the best option we had and so we sucked it up and did it. One

nice thing is that the preliminary data from these levels of radiation

have shown not actual dimunition in IQ in the small cohort they have

followed for over five years. Without checking the protocol, I am not

100% sure of the timing for the next eval. I think it is at two years

and I know that it is not valid to redo the eval before one year

(having to do with the testing itself). At this point, there is

nothing medically to be done to prevent the effects, so in a sense

there is no rush.

As for hearing loss, she saw plenty of cisplatin and carboplatin as

well as the TBI and a few weeks of gentamicin and vancomicin which

are, obviously, potentiall problematic. But only carbo once

transplant started. Amazingly, she had no measureable hearing loss

before transplant. The nurse practioneer actually thought she had the

wrong audiology report. But in transplant she had carbo, TBI and some

gent, plus maybe the previous stuff kicked in, so what can ya do?

Interesting about Elias's late walking and low tone with no clear

reason. Ruby was also in Early Intervention/Infants and Toddler, but

the transition to regular IDEA/IEP stuff got botched up because she

was hospitalized and in active treatment. We had an IEP in place, but

it was canceled since we couldn't participate in any meetings and Ruby

was in Philadelphia. I think I could have dealt with that and made

things easier for the transition, but I was, obviously, pretty focused

elsewhere. I have had many unchartible thoughts about the special ed

folks here in Baltimore through our five years in the system! But

it's a new day and I am hoping for better!

Gotta run.

Thanks-

> >

> > Hi Bonnie-

> >

> > Thanks for the reply and hello. In answer to your questions: Yes, I

> > did find this list through you note on the ACOR Neuroblastoma list.

> > Thanks. I have been reading this one a bit, but have been so busy and

> > it is all such a new " language " to me, that I haven't been able to

> > absorb it. But now I think it is time I get going up the learning

> > curve about this hearing loss stuff!

> >

> >

> >

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

Ah yes, those consent forms. I remember having to sign off on those,

and feeling so sad about the hearing loss part. We are a musical family,

and it just seemed so awful. Now, of course, I am totally happy to be

dealing with hearing aids instead of neuroblastoma (and I realize people

on this list will not understand that but it is how it is). The hearing loss

is correctable, and while I do have to keep on top of it, I just keep saying

" We can deal with this! " . Elias is even signed up to take music lessons

starting in a few weeks. And he is as musical as his brother.

I have a friend here in Westchester whose daughter is a 4 year survivor

of stage IV neuroblastoma. She didn't do TBI, but she had head radiation

because of mets to her skull. She has to do the neuropsych every year

because of it, but it never shows any learning problems. She also somehow

escaped the hearing loss part - lucky kid! I think that may contribute

to her lack of learning problems, actually.

And cancelling the IEP because you couldn't get to the meetings was

illegal, illegal, illegal! The law says clearly that meetings have to

be scheduled so that the parents can participate. Our district tried to

pull that one on us last spring. They scheduled the meeting right during

an antibody round, and sent me a form that made it look like I had

to take that meeting time or waive the right to be present. On the advice

of friends who were knowledgable in this stuff, I took their stupid

form and put my own note on it saying that the meeting had to be

rescheduled so that I could be there.

I totally understand how hard it is to focus on IEPs when your child

is in treatment. Elias was entirely in the EI system during treatment,

which is a little more parent-friendly. Even there, it was dicey - trying

to get evals done when we had no idea if he would be inpatient

or outpatient - oh boy was that hard. He actually had his speech eval

done while he was inpatient at MSKCC. The EI person was willing

to come there. And his motor skills eval was done in the evening after

he had been discharged that morning. We called the evaluator on

our drive home from MSKCC and said " can you come this evening?

He's home, but we don't know for how long " . And she came.

I think I set all that up mainly as a distraction from the horrors of chemo.

It was something more hopeful to think about.

Have a good trip, and I hope everything is working out well for you.

Bonnie

>

> Hi Bonnie-

>

> She is about 10 months out of the second transplant. They do the

> neuropsych eval before so they have a baseline to evaluate the late

> effect impacts of exactly the things you mention (TBI, etc.). No

> doubt that the consent form for the TBI, with possibility of cognitive

> effects was the hardest to sign of the zillions I have signed. But it

> was the best option we had and so we sucked it up and did it. One

> nice thing is that the preliminary data from these levels of radiation

> have shown not actual dimunition in IQ in the small cohort they have

> followed for over five years. Without checking the protocol, I am not

> 100% sure of the timing for the next eval. I think it is at two years

> and I know that it is not valid to redo the eval before one year

> (having to do with the testing itself). At this point, there is

> nothing medically to be done to prevent the effects, so in a sense

> there is no rush.

>

> As for hearing loss, she saw plenty of cisplatin and carboplatin as

> well as the TBI and a few weeks of gentamicin and vancomicin which

> are, obviously, potentiall problematic. But only carbo once

> transplant started. Amazingly, she had no measureable hearing loss

> before transplant. The nurse practioneer actually thought she had the

> wrong audiology report. But in transplant she had carbo, TBI and some

> gent, plus maybe the previous stuff kicked in, so what can ya do?

>

> Interesting about Elias's late walking and low tone with no clear

> reason. Ruby was also in Early Intervention/Infants and Toddler, but

> the transition to regular IDEA/IEP stuff got botched up because she

> was hospitalized and in active treatment. We had an IEP in place, but

> it was canceled since we couldn't participate in any meetings and Ruby

> was in Philadelphia. I think I could have dealt with that and made

> things easier for the transition, but I was, obviously, pretty focused

> elsewhere. I have had many unchartible thoughts about the special ed

> folks here in Baltimore through our five years in the system! But

> it's a new day and I am hoping for better!

>

> Gotta run.

>

> Thanks-

>

>

>

> > >

> > > Hi Bonnie-

> > >

> > > Thanks for the reply and hello. In answer to your questions: Yes, I

> > > did find this list through you note on the ACOR Neuroblastoma list.

> > > Thanks. I have been reading this one a bit, but have been so busy and

> > > it is all such a new " language " to me, that I haven't been able to

> > > absorb it. But now I think it is time I get going up the learning

> > > curve about this hearing loss stuff!

> > >

> > >

> > >

> >

> >

> >

Share this post


Link to post
Share on other sites
Guest guest

Ah yes, those consent forms. I remember having to sign off on those,

and feeling so sad about the hearing loss part. We are a musical family,

and it just seemed so awful. Now, of course, I am totally happy to be

dealing with hearing aids instead of neuroblastoma (and I realize people

on this list will not understand that but it is how it is). The hearing loss

is correctable, and while I do have to keep on top of it, I just keep saying

" We can deal with this! " . Elias is even signed up to take music lessons

starting in a few weeks. And he is as musical as his brother.

I have a friend here in Westchester whose daughter is a 4 year survivor

of stage IV neuroblastoma. She didn't do TBI, but she had head radiation

because of mets to her skull. She has to do the neuropsych every year

because of it, but it never shows any learning problems. She also somehow

escaped the hearing loss part - lucky kid! I think that may contribute

to her lack of learning problems, actually.

And cancelling the IEP because you couldn't get to the meetings was

illegal, illegal, illegal! The law says clearly that meetings have to

be scheduled so that the parents can participate. Our district tried to

pull that one on us last spring. They scheduled the meeting right during

an antibody round, and sent me a form that made it look like I had

to take that meeting time or waive the right to be present. On the advice

of friends who were knowledgable in this stuff, I took their stupid

form and put my own note on it saying that the meeting had to be

rescheduled so that I could be there.

I totally understand how hard it is to focus on IEPs when your child

is in treatment. Elias was entirely in the EI system during treatment,

which is a little more parent-friendly. Even there, it was dicey - trying

to get evals done when we had no idea if he would be inpatient

or outpatient - oh boy was that hard. He actually had his speech eval

done while he was inpatient at MSKCC. The EI person was willing

to come there. And his motor skills eval was done in the evening after

he had been discharged that morning. We called the evaluator on

our drive home from MSKCC and said " can you come this evening?

He's home, but we don't know for how long " . And she came.

I think I set all that up mainly as a distraction from the horrors of chemo.

It was something more hopeful to think about.

Have a good trip, and I hope everything is working out well for you.

Bonnie

>

> Hi Bonnie-

>

> She is about 10 months out of the second transplant. They do the

> neuropsych eval before so they have a baseline to evaluate the late

> effect impacts of exactly the things you mention (TBI, etc.). No

> doubt that the consent form for the TBI, with possibility of cognitive

> effects was the hardest to sign of the zillions I have signed. But it

> was the best option we had and so we sucked it up and did it. One

> nice thing is that the preliminary data from these levels of radiation

> have shown not actual dimunition in IQ in the small cohort they have

> followed for over five years. Without checking the protocol, I am not

> 100% sure of the timing for the next eval. I think it is at two years

> and I know that it is not valid to redo the eval before one year

> (having to do with the testing itself). At this point, there is

> nothing medically to be done to prevent the effects, so in a sense

> there is no rush.

>

> As for hearing loss, she saw plenty of cisplatin and carboplatin as

> well as the TBI and a few weeks of gentamicin and vancomicin which

> are, obviously, potentiall problematic. But only carbo once

> transplant started. Amazingly, she had no measureable hearing loss

> before transplant. The nurse practioneer actually thought she had the

> wrong audiology report. But in transplant she had carbo, TBI and some

> gent, plus maybe the previous stuff kicked in, so what can ya do?

>

> Interesting about Elias's late walking and low tone with no clear

> reason. Ruby was also in Early Intervention/Infants and Toddler, but

> the transition to regular IDEA/IEP stuff got botched up because she

> was hospitalized and in active treatment. We had an IEP in place, but

> it was canceled since we couldn't participate in any meetings and Ruby

> was in Philadelphia. I think I could have dealt with that and made

> things easier for the transition, but I was, obviously, pretty focused

> elsewhere. I have had many unchartible thoughts about the special ed

> folks here in Baltimore through our five years in the system! But

> it's a new day and I am hoping for better!

>

> Gotta run.

>

> Thanks-

>

>

>

> > >

> > > Hi Bonnie-

> > >

> > > Thanks for the reply and hello. In answer to your questions: Yes, I

> > > did find this list through you note on the ACOR Neuroblastoma list.

> > > Thanks. I have been reading this one a bit, but have been so busy and

> > > it is all such a new " language " to me, that I haven't been able to

> > > absorb it. But now I think it is time I get going up the learning

> > > curve about this hearing loss stuff!

> > >

> > >

> > >

> >

> >

> >

Share this post


Link to post
Share on other sites
Guest guest

Ah yes, those consent forms. I remember having to sign off on those,

and feeling so sad about the hearing loss part. We are a musical family,

and it just seemed so awful. Now, of course, I am totally happy to be

dealing with hearing aids instead of neuroblastoma (and I realize people

on this list will not understand that but it is how it is). The hearing loss

is correctable, and while I do have to keep on top of it, I just keep saying

" We can deal with this! " . Elias is even signed up to take music lessons

starting in a few weeks. And he is as musical as his brother.

I have a friend here in Westchester whose daughter is a 4 year survivor

of stage IV neuroblastoma. She didn't do TBI, but she had head radiation

because of mets to her skull. She has to do the neuropsych every year

because of it, but it never shows any learning problems. She also somehow

escaped the hearing loss part - lucky kid! I think that may contribute

to her lack of learning problems, actually.

And cancelling the IEP because you couldn't get to the meetings was

illegal, illegal, illegal! The law says clearly that meetings have to

be scheduled so that the parents can participate. Our district tried to

pull that one on us last spring. They scheduled the meeting right during

an antibody round, and sent me a form that made it look like I had

to take that meeting time or waive the right to be present. On the advice

of friends who were knowledgable in this stuff, I took their stupid

form and put my own note on it saying that the meeting had to be

rescheduled so that I could be there.

I totally understand how hard it is to focus on IEPs when your child

is in treatment. Elias was entirely in the EI system during treatment,

which is a little more parent-friendly. Even there, it was dicey - trying

to get evals done when we had no idea if he would be inpatient

or outpatient - oh boy was that hard. He actually had his speech eval

done while he was inpatient at MSKCC. The EI person was willing

to come there. And his motor skills eval was done in the evening after

he had been discharged that morning. We called the evaluator on

our drive home from MSKCC and said " can you come this evening?

He's home, but we don't know for how long " . And she came.

I think I set all that up mainly as a distraction from the horrors of chemo.

It was something more hopeful to think about.

Have a good trip, and I hope everything is working out well for you.

Bonnie

>

> Hi Bonnie-

>

> She is about 10 months out of the second transplant. They do the

> neuropsych eval before so they have a baseline to evaluate the late

> effect impacts of exactly the things you mention (TBI, etc.). No

> doubt that the consent form for the TBI, with possibility of cognitive

> effects was the hardest to sign of the zillions I have signed. But it

> was the best option we had and so we sucked it up and did it. One

> nice thing is that the preliminary data from these levels of radiation

> have shown not actual dimunition in IQ in the small cohort they have

> followed for over five years. Without checking the protocol, I am not

> 100% sure of the timing for the next eval. I think it is at two years

> and I know that it is not valid to redo the eval before one year

> (having to do with the testing itself). At this point, there is

> nothing medically to be done to prevent the effects, so in a sense

> there is no rush.

>

> As for hearing loss, she saw plenty of cisplatin and carboplatin as

> well as the TBI and a few weeks of gentamicin and vancomicin which

> are, obviously, potentiall problematic. But only carbo once

> transplant started. Amazingly, she had no measureable hearing loss

> before transplant. The nurse practioneer actually thought she had the

> wrong audiology report. But in transplant she had carbo, TBI and some

> gent, plus maybe the previous stuff kicked in, so what can ya do?

>

> Interesting about Elias's late walking and low tone with no clear

> reason. Ruby was also in Early Intervention/Infants and Toddler, but

> the transition to regular IDEA/IEP stuff got botched up because she

> was hospitalized and in active treatment. We had an IEP in place, but

> it was canceled since we couldn't participate in any meetings and Ruby

> was in Philadelphia. I think I could have dealt with that and made

> things easier for the transition, but I was, obviously, pretty focused

> elsewhere. I have had many unchartible thoughts about the special ed

> folks here in Baltimore through our five years in the system! But

> it's a new day and I am hoping for better!

>

> Gotta run.

>

> Thanks-

>

>

>

> > >

> > > Hi Bonnie-

> > >

> > > Thanks for the reply and hello. In answer to your questions: Yes, I

> > > did find this list through you note on the ACOR Neuroblastoma list.

> > > Thanks. I have been reading this one a bit, but have been so busy and

> > > it is all such a new " language " to me, that I haven't been able to

> > > absorb it. But now I think it is time I get going up the learning

> > > curve about this hearing loss stuff!

> > >

> > >

> > >

> >

> >

> >

Share this post


Link to post
Share on other sites
Guest guest

A deaf boy in our school district was first chair clarinet player several

years ago. He used an instrument clipped onto his clarinet that showed if

he was on pitch. Tish

Share this post


Link to post
Share on other sites
Guest guest

A deaf boy in our school district was first chair clarinet player several

years ago. He used an instrument clipped onto his clarinet that showed if

he was on pitch. Tish

Share this post


Link to post
Share on other sites
Guest guest

A deaf boy in our school district was first chair clarinet player several

years ago. He used an instrument clipped onto his clarinet that showed if

he was on pitch. Tish

Share this post


Link to post
Share on other sites
Guest guest

Now that is very cool! Thanks for sharing that. I come from the

musical part of my family and had always hoped that Ruby would share

that with me. Time will tell I guess. She has only recently seemed

to develop much ability to sing on pitch and we have been living

without my piano, so she hasn't had the benefit of being around that.

But she has always connected with my guitar playing, singing, violin

and some rhythm stuff, so hopefully it is in there and if it is, I

suspect it will find a way to come out. Her paralysis makes dancing

awkward, but I have also seen the amazing teenage wheelchair athletes

we know at a dance and, you know, there is just no stopping a

determined teenager from dancing when they are moved to do so!

Thanks again for letting me know-

>

> A deaf boy in our school district was first chair clarinet player

several

> years ago. He used an instrument clipped onto his clarinet that

showed if

> he was on pitch. Tish

>

Share this post


Link to post
Share on other sites
Guest guest

Yeah, music is mostly my thing, not my wife's. Growing up, I played

piano, violin, trombone, a little bit of other random things without

lessons and sang inschool chrouses and productions. I added guitar

later in life. Initially, Ruby wanted ot play guitar, but I think it

is not a great instrument to start on. Especially young. Mostly

because it is kind of hard for small hands without a lot of dexterity

and strength. My guess is that it takes more strength than violin.

But obviously lots of little kids do play, so who knows? I thikn that

classically, violin and piano are good starters since they can clearly

carry a melody. I actually got Ruby a nice ukelele when she was two

or three which filled her desire for a guitar for a while and she has

enjoyed strumming along, making up songs of one sort or another. I

have great pictures of heron day +1 or +2 of transplant, sitting up in

bed playing her uke and making up a song called " I'm not a honey

bear " . Amazing to me to look at, knowing she has had lethalchemo at

that point and is in limbo waiting to see if she will engraft or die

and yet there she is singing.

Ruby wanted a violin last year, but on the advice of my old piano

teacher, I put her off. I did Suzuki as a kid and I think it has

pluses nad missus. I decided I wanted her to learn another way if she

did it and also not start so early that she then got bored or bummed

at it. I am thinking that if she shows interest again, we'll go for

it. I wish I had time to play or write or sing again now. Maybe when

life gets simple again! lol!

> >

> > Now that is very cool! Thanks for sharing that. I come from the

> > musical part of my family and had always hoped that Ruby would share

> > that with me. Time will tell I guess. She has only recently seemed

> > to develop much ability to sing on pitch and we have been living

> > without my piano, so she hasn't had the benefit of being around that.

> > But she has always connected with my guitar playing, singing, violin

> > and some rhythm stuff, so hopefully it is in there and if it is, I

> > suspect it will find a way to come out. Her paralysis makes dancing

> > awkward, but I have also seen the amazing teenage wheelchair athletes

> > we know at a dance and, you know, there is just no stopping a

> > determined teenager from dancing when they are moved to do so!

> >

> > Thanks again for letting me know-

> >

> >

> >

> >

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

Trust me, life will never get simple again... But you will have time to

make music again. We're finally at that point again. You'll get there.

I didn't do Suzuki as a child, and wish I had. I like the focus on

ear training. My older son did two years of it, but bailed this

year because he didn't like the teacher (whose heart wasn't

in Suzuki anyway), and the book gets kind of boring. But Suzuki

was great prep for playing fiddle music, which is all about

playing by ear. He is really loving his fiddle lessons.

I think the reason Elias wants to play guitar is because

the Wiggles have a guitar player. Wiggles videos were

his constant comfort during the 2 years of painful 3F8 treatments.

He even met them once at MSKCC!

To take this back on track with this mailing list - I am wondering

about using the FM system when Elias starts music class.

He starts a Dalcroize Eurythimics class in 2 weeks. The school

says that the instructor has a lot of experience with special

needs kids, and teaches in their music therapy division. But this

class is for non-special-needs class. I am wondering if I should

ask the instructor to use the FM system during class.

Bonnie

>

> Yeah, music is mostly my thing, not my wife's. Growing up, I played

> piano, violin, trombone, a little bit of other random things without

> lessons and sang inschool chrouses and productions. I added guitar

> later in life. Initially, Ruby wanted ot play guitar, but I think it

> is not a great instrument to start on. Especially young. Mostly

> because it is kind of hard for small hands without a lot of dexterity

> and strength. My guess is that it takes more strength than violin.

> But obviously lots of little kids do play, so who knows? I thikn that

> classically, violin and piano are good starters since they can clearly

> carry a melody. I actually got Ruby a nice ukelele when she was two

> or three which filled her desire for a guitar for a while and she has

> enjoyed strumming along, making up songs of one sort or another. I

> have great pictures of heron day +1 or +2 of transplant, sitting up in

> bed playing her uke and making up a song called " I'm not a honey

> bear " . Amazing to me to look at, knowing she has had lethalchemo at

> that point and is in limbo waiting to see if she will engraft or die

> and yet there she is singing.

>

> Ruby wanted a violin last year, but on the advice of my old piano

> teacher, I put her off. I did Suzuki as a kid and I think it has

> pluses nad missus. I decided I wanted her to learn another way if she

> did it and also not start so early that she then got bored or bummed

> at it. I am thinking that if she shows interest again, we'll go for

> it. I wish I had time to play or write or sing again now. Maybe when

> life gets simple again! lol!

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

How fun! My undergrad degree is in music - I'm a classical organist.

When I found out that both my kids were deaf, I figured neither would do

music but my Sam loves it. He's in two choruses and also plays the sax

in band. My boy!

We did have the teacher use the FM in music class and for the most part

it worked well. He/she just needs to turn it off with a group sing (if

that's the focus of the class) and one of our music teachers played the

piano while the kids sang so in that situation, it needed to be turned

off. You might want to monitor the class a time or two to see how it

works but our guys liked it.

Oh - once our boys could read, we'd have the teacher give them the words

to the songs; before they read they'd give them to us and we'd go over

the lyrics with our guys.

Barbara

Bonnie MacKellar wrote:

> Trust me, life will never get simple again... But you will have time to

> make music again. We're finally at that point again. You'll get there.

>

> I didn't do Suzuki as a child, and wish I had. I like the focus on

> ear training. My older son did two years of it, but bailed this

> year because he didn't like the teacher (whose heart wasn't

> in Suzuki anyway), and the book gets kind of boring. But Suzuki

> was great prep for playing fiddle music, which is all about

> playing by ear. He is really loving his fiddle lessons.

>

> I think the reason Elias wants to play guitar is because

> the Wiggles have a guitar player. Wiggles videos were

> his constant comfort during the 2 years of painful 3F8 treatments.

> He even met them once at MSKCC!

>

> To take this back on track with this mailing list - I am wondering

> about using the FM system when Elias starts music class.

> He starts a Dalcroize Eurythimics class in 2 weeks. The school

> says that the instructor has a lot of experience with special

> needs kids, and teaches in their music therapy division. But this

> class is for non-special-needs class. I am wondering if I should

> ask the instructor to use the FM system during class.

>

> Bonnie

>

>

>

>> Yeah, music is mostly my thing, not my wife's. Growing up, I played

>> piano, violin, trombone, a little bit of other random things without

>> lessons and sang inschool chrouses and productions. I added guitar

>> later in life. Initially, Ruby wanted ot play guitar, but I think it

>> is not a great instrument to start on. Especially young. Mostly

>> because it is kind of hard for small hands without a lot of dexterity

>> and strength. My guess is that it takes more strength than violin.

>> But obviously lots of little kids do play, so who knows? I thikn that

>> classically, violin and piano are good starters since they can clearly

>> carry a melody. I actually got Ruby a nice ukelele when she was two

>> or three which filled her desire for a guitar for a while and she has

>> enjoyed strumming along, making up songs of one sort or another. I

>> have great pictures of heron day +1 or +2 of transplant, sitting up in

>> bed playing her uke and making up a song called " I'm not a honey

>> bear " . Amazing to me to look at, knowing she has had lethalchemo at

>> that point and is in limbo waiting to see if she will engraft or die

>> and yet there she is singing.

>>

>> Ruby wanted a violin last year, but on the advice of my old piano

>> teacher, I put her off. I did Suzuki as a kid and I think it has

>> pluses nad missus. I decided I wanted her to learn another way if she

>> did it and also not start so early that she then got bored or bummed

>> at it. I am thinking that if she shows interest again, we'll go for

>> it. I wish I had time to play or write or sing again now. Maybe when

>> life gets simple again! lol!

>>

>>

>>

>>

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

We did Yamaha with Maggie and her older sister. Older sister was " singing " on

key before she was 1 year old! So she definitely inherited the family's musical

ear. She did Yamaha and then went on to regular piano lessons from the Yamaha

teacher who knew how to make the transition. She sings very well and learned to

harmonize in about an hour. I benefitted from the solfege singing to the point

where I can now sing alto harmony (the musical ear is in my husband's family!).

But it took me a few YEARS. Maggie didn't get much out of Yamaha but I really

think she might have if we'd had the FM then. She did develop a love for music

though. We found in 5th grade when she tried to play the baritone horn that she

simply couldn't hear the difference in half steps. Was fine with whole steps.

We have found over the years that if she sings along with a CD and knows the

song well she can carry a tune, but it takes work on her part. We have always

chalked it up to the hearing loss but there are plenty of people with hearing

loss that can hear and do music. So Bonnie, I'd definitely suggest trying the

FM in music class.

Share this post


Link to post
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
Sign in to follow this  

×
×
  • Create New...