Re: swallowing and IEP

[Guest guest]

Deedee--

Sounds like Bryce is doing great with feedings!! What Kind of treatments does Marcy do? Is there an age limit as to when to start these treatments?

How long does each treatment lasts or is it a series of treatments? I'm interested because the speech therapy for Josh's swallowing doesn't seem to be working. His mouth is so sensitive to everything except his fingers.

About the IEP--When Kriste was in elementary, the school district kept supplying speech therapist in the role of hearing impaired teacher. They would get an emergency certificate for a year. This occurred for two years.

I finally went to the board to get her transferred to the right school system--it was even out of state(I live in Southaven, MS just outside of Memphis, TN). When I demanded that her needs were not being provided per government policies, they were very open to payment to correct district. It was after I threatened to file an civil suit with the ACLU. This probably won't help but you will have to find a reason that the plan presented is not right for your son. Schooling is such a touchy situation..

Been there--do that--doing it again with grandchild

Iris, mother and grandmother to chargers--Kriste and Josh

[Guest guest]

Deedee-

I am amazed that the stim therapy could make such a remarkable

difference! Wow! I am so happy for all of you! Will you continue with

more? Will the effects last forever? I have so many questions.

Although Aubrie is eating orally, I am absolutely intrigued. I wonder

if this kind of therapy would have helped her as an infant and

eliminated the need for the tube we had for over a year.

Regarding the IEP -- The law does not allow for blanket policies like

that. They can't place Bryce at the home school just because that's

what they do now for kids like him. Placement by category and blanket

policy is against the IDEA. Remember it's an " individualized education

plan " . Sheryl in Iowa just fought and won a case related to the

district's responsibility to provide a full continuum of services.

Although the trend is moving towards inclusion, it's not right for every

child. The district must provide a full range of placement options,

ranging from full inclusion in the neighborhood school to a residential

facility. The decision for each child must be made by the team

considering the child's unique needs.

Perhaps your state's advocacy group could help by providing some support

and helping you to build your argument. I am convinced that what they

are doing is wrong. The challenge will be to change it. Good luck and

keep us posted!

Michele W

Aubrie's mom

[Guest guest]

Hi Deedee,

Welcome back! I'm so glad to hear of your success with oral eating! It is

one of the hardest struggles with CHARGE - the eating.

About the IEP. You are very lucky to have an Oral School For the Deaf. Our

daughter signed until she was 3 but we noticed she enjoyed using her

voice and talking. We then began Auditory Verbal Therapy and she began to

use verbal language ever increasingly. However, we do not have oral choices

here in Ontario. It's either the public school system or the Deaf School

and after checking, there were not any oral children enrolled when our

daughter was to go to Kindergarten and an oral class was not an option. We

tested the waters of the public system. It has been a long haul even though

is doing fairly well. We ended up repeating Kindergarten, enabling

her to have a good second year, more leadership qualities, more language

exposure. The second year, they began to introduce the grade 1 curriculum

then by the time she entered grade 1 she was at that level and didn't have

any difficulties. She made new friends too and now she goes up each grade

with them. She is fully integrated and receives the support of an

assistant, a Language Support class and a Teacher of the Deaf and Hard of

Hearing. I know Montreal has an Oral School and I would have loved that

option in order to build her skills better before exposure to the public

system. If Bryce is developing his oral skills with the implant than yes as

much exposure to sound and verbal skills are necessary (public system-but

with SUPPORTS!!!) but because this Oral School exists that sounds like a

better choice. If you feel he needs this environment to continue to build

his success and it provides him with good exposure to all learning, I would

find any way to make it happen! Because you are in the U.S. I'm not

familiar with what process you would need to follow. We wish you luck.

Pat, , (13), (9-CHARGE)

Rittgasser

Keswick, Ontario, Canada

swallowing and IEP

I am back on the list after a long abscence due to a flood in our house that

forcedus to move out for 3 months. But we are back. And we just returned

from

seeing Marcy Freed for the 2nd time and my son, Bryce (4 next month) is

eating everything! He was only eating puddings and yogurts before we went

for

round 2. We have been back one week and he is eating corn, cheese,

cereal,peas, chicken sticks,cookies etc... We are thrilled. I am a belever

in

the electric stim that Marcy does. Nothing else was working for Bryce. They

did a modified barium swallow before and after the treatments and the

improvement in his swallow was obvious on the x-rays. Marcy had not been

doing the treatments since July but she is now back up and running again.

Her e-mail address is marcy.freed@... if anyone wants to contact her.

But we arrived back to a new challenge that I need your help with. North

Carolina is changing the way that they serve deaf kids. To make a long story

short, they are removing Bryce from his trained teachers and speech

therapists at the oral school for the deaf and putting him in the greater

public school system with teachers and therapists who have not worked with

deaf preschoolers who are just getting language. I want to make the argument

at his IEP on Feb. 26th that Bryce is not the kid to practice on (the new

teachers are willing to learn auditory verbal therapy) because of all his

other complications which have put him in the seriously delayed catagory.

We

believe Bryce can get spoken language but he needs every advantage to do so.

He started talking the week before Christmas and now knows about 30 words.

(His coclear implant just started working a few months ago and he heard

nothing with aids.) Anyway, I'm asking for IEP advice for this situation. We

want them to make an exception to this new policy and allow Bryce to stay

with the teachers he has.Thanks.

Deedee, Mom to a kid who is eating like crazy!

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

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

CHARGE Syndrome Foundation's newsletter. "

For information about the CHARGE Syndrome

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

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

[Guest guest]

Iris,

Marcy will work with anyone of any age. There is no limit on either end

as far as I know. She believes that the sooner the better to avoid

complications that come from not eating orally. The treatments are given one

a day for up to 15 days. We had 12 treatments the second time. They last 1

hour a day and are non-aversive. The kids play or watch TV while the stim is

going on. However, I don't know how much it would help with extreme oral

sensitivity. I would contact Marcy directly about that one.

Deedee

[Guest guest]

For those of new on the list - Where is Marcy located? Kim mom to age

2 - Gtube fed

Re: swallowing and IEP

Iris,

Marcy will work with anyone of any age. There is no limit on either end

as far as I know. She believes that the sooner the better to avoid

complications that come from not eating orally. The treatments are given one

a day for up to 15 days. We had 12 treatments the second time. They last 1

hour a day and are non-aversive. The kids play or watch TV while the stim is

going on. However, I don't know how much it would help with extreme oral

sensitivity. I would contact Marcy directly about that one.

Deedee

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

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

CHARGE Syndrome Foundation's newsletter. "

For information about the CHARGE Syndrome

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

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

[Guest guest]

I just wanted to put in a little note about what I

have learned about this from Wyatt's OT. She had us

get a little " kit " located by the children's tooth

brushes, etc that has like 3 little " wands " in them.

They are rubber and have little bumps on the ends.

These are used for Oral Stimulation. We used them

right before his feedings (on tongue, gums) and they

really seemed to help. Their name escapes me right

now...The only name that pops in my head is " Num " but

don't know if that's cause it's the name, or just

cause my foot is asleep right now, but either way,

they worked wonders for Wyatt...just a thought for you

all.

--- JDDUNGETHEIM749@... wrote:

> Iris,

> Marcy will work with anyone of any age. There is

> no limit on either end

> as far as I know. She believes that the sooner the

> better to avoid

> complications that come from not eating orally. The

> treatments are given one

> a day for up to 15 days. We had 12 treatments the

> second time. They last 1

> hour a day and are non-aversive. The kids play or

> watch TV while the stim is

> going on. However, I don't know how much it would

> help with extreme oral

> sensitivity. I would contact Marcy directly about

> that one.

> Deedee

>

__________________________________________________

[Guest guest]

-

The brushes you're talking about are Nuk brushes. They seem to be a

standard tool for speech therapists and OT working on oral stimulation.

They are available at Toys R Us etc in the toothbrush dept. I believe

they are sold as an infants first toothbrush set.

Michele W

Aubrie's mom

[Guest guest]

Marcy is in Cleveland, Ohio.

Deedee

[Guest guest]

DeeDee,

I am so thrilled to hear about Bryce & his eating! Kennedy has a chest infection/poss. pneumonia right now and I don't know if it's from eating or just regular pneumonia, I wish we could lick this eating thing, everything else is coming so great.

I hope you get some answers to your school dilemma, things are so different it seems up here in Canada that I"m afraid I wouldn't be of much help other than to tell you what you already know, don't give up until you get what you know he needs! Good luck!

Mom to Kennedy 3yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/kawfolksICQ #1426476

swallowing and IEP

I am back on the list after a long abscence due to a flood in our house that forcedus to move out for 3 months. But we are back. And we just returned from seeing Marcy Freed for the 2nd time and my son, Bryce (4 next month) is eating everything! He was only eating puddings and yogurts before we went for round 2. We have been back one week and he is eating corn, cheese, cereal,peas, chicken sticks,cookies etc... We are thrilled. I am a belever in the electric stim that Marcy does. Nothing else was working for Bryce. They did a modified barium swallow before and after the treatments and the improvement in his swallow was obvious on the x-rays. Marcy had not been doing the treatments since July but she is now back up and running again.Her e-mail address is marcy.freed@... if anyone wants to contact her. But we arrived back to a new challenge that I need your help with. North Carolina is changing the way that they serve deaf kids. To make a long story short, they are removing Bryce from his trained teachers and speech therapists at the oral school for the deaf and putting him in the greater public school system with teachers and therapists who have not worked with deaf preschoolers who are just getting language. I want to make the argument at his IEP on Feb. 26th that Bryce is not the kid to practice on (the new teachers are willing to learn auditory verbal therapy) because of all his other complications which have put him in the seriously delayed catagory. We believe Bryce can get spoken language but he needs every advantage to do so. He started talking the week before Christmas and now knows about 30 words. (His coclear implant just started working a few months ago and he heard nothing with aids.) Anyway, I'm asking for IEP advice for this situation. We want them to make an exception to this new policy and allow Bryce to stay with the teachers he has.Thanks.Deedee, Mom to a kid who is eating like crazy! "5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Deedee,

I know nothing of this therapy in which you speak of. Are there any

articles on line or can you lead me to where I can find out as much

information about this as possible.

Thanks!

Nicol mom to 7 CHARGE and Jordan 3

At 08:15 AM 2/18/01 -0500, you wrote:

>I am back on the list after a long abscence due to a flood in our house that

>forcedus to move out for 3 months. But we are back. And we just returned from

>seeing Marcy Freed for the 2nd time and my son, Bryce (4 next month) is

>eating everything! He was only eating puddings and yogurts before we went for

>round 2. We have been back one week and he is eating corn, cheese,

>cereal,peas, chicken sticks,cookies etc... We are thrilled. I am a belever in

>the electric stim that Marcy does. Nothing else was working for Bryce. They

>did a modified barium swallow before and after the treatments and the

>improvement in his swallow was obvious on the x-rays. Marcy had not been

>doing the treatments since July but she is now back up and running again.

>Her e-mail address is marcy.freed@... if anyone wants to contact her.

>

> But we arrived back to a new challenge that I need your help with. North

>Carolina is changing the way that they serve deaf kids. To make a long story

>short, they are removing Bryce from his trained teachers and speech

>therapists at the oral school for the deaf and putting him in the greater

>public school system with teachers and therapists who have not worked with

>deaf preschoolers who are just getting language. I want to make the argument

>at his IEP on Feb. 26th that Bryce is not the kid to practice on (the new

>teachers are willing to learn auditory verbal therapy) because of all his

>other complications which have put him in the seriously delayed catagory. We

>believe Bryce can get spoken language but he needs every advantage to do so.

>He started talking the week before Christmas and now knows about 30 words.

>(His coclear implant just started working a few months ago and he heard

>nothing with aids.) Anyway, I'm asking for IEP advice for this situation. We

>want them to make an exception to this new policy and allow Bryce to stay

>with the teachers he has.Thanks.

>

>Deedee, Mom to a kid who is eating like crazy!

>

>

>

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

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

>CHARGE Syndrome Foundation's newsletter. "

>

>For information about the CHARGE Syndrome

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

>please contact marion@... or visit

>the CHARGE Syndrome Foundation web page

>at http://www.chargesyndrome.org