Re: Benefits of PT and OT?

[Guest guest]

HI Kathy, Here are some answers to some of your question:

>What have you guys seen in your experience? Is ongoing therapy or monitoring

>

>important?

For my family therapy has been necessary to provide medical necessity letters

for unusual needs. With episodes of deterioration, therapist can lend

suggestions that coupled with the doctors assessment can provide more

balanced recommendations.

Are there intermittent times where therapy is of definite need

>.

>. .like, say, after a major regression with illness or stroke-like episode

>to

>speed recovery of skills OR will recovery occur spontaneously if it is

>going

>to occur at all?

I think it is hard to know exactly for sure to what degree therapy impacts

ones ability to recover from regression or from a stroke type event. However

therapy can show you new ways to deal with your " new " deficits and a good

therapist can assist you with finding appropriate pieces of equipment that may

be needed with a sudden change. I and two of my children have benefited

from therapy in this way. As a general rule, we do without therapy as often

as possible just to save our insurance dollars. When there has been a

significant change suddenly, both my and my children's docs have recommended

therapy, say post stroke type event.

What about for mild motor delays?

I have a 16 year old who has lost some of what he used to have versus delay

to begin with. We use therapy on a consult basis and on an as need basis

instead of ongoing.

Have you seen therapy

>

>make a difference?

If I may be honest and say, I have not seen therapy make a difference in and

of itself above and beyond what family members are already doing (I am

speaking in regard to all of us, but more particularly to my 7 year old who

is our most affected). I have seen therapy teach us new ways of doing the

same thing and assist with equipment needs and the implementation of ROM has

been helpful to my youngest. However, he still needs AFO's and I still am the

one to do the majority of his ROM. The therapy is typically not helpful, but

the information gained from therapy can give a whole new lease on life when

one learns a whole new way of doing something one lost.

Early on, I used to depend upon the therapist for equipment needs and

recommendations. By this point in time, I do my own equipment research

because I have very good understanding of our condition and needs. Most

therapist are not up on the latest and the there may be something more

appropriate that the therapist is not aware of. I am presently researching

walkers for my 7 year old presently and when I finally make my request, it

will be an informed decision! The therapist may need to write a letter of

need however as that generally will not be accepted from me.

What are the goals of therapy for your children?

This is individual per child, but overall, we like to have access to

therapist for input and to ask their suggestions and ideas with problem areas.

Sometimes my suggestions are better suited to our needs, sometimes the

therapist suggestions are better. Our goals for therapy is to have assistance

with information to empower us to be as independent as possible. If my child

needs daily therapy of some nature (as my does and my 16 year old is

supposed to-another topic) then we learn what needs to be done and carry it

out ourselves. When my youngest lost his speech, we instantly increased

speech therapy to find out what needed to be done to help him. Therapy did

not help him, but through a multi discipline evaluation done at a center that

does such, I found out what pieces of equipment he needed to move forward

with communications. Today I am usually one step ahead of the therapist in

that regard as I take the time to research my son's needs to insure he is

getting what s appropriate for needs.

More directly, we use PT to help with mobility issues like wheelchair,

walker, leg braces, etc.

OT we use more for activities of daily living needs like ways to access his

AAC device, bath seat, cervical neck collars, etc.

ST we use for AAC and to help assess changes in speech that occur. Some ST's

can help me find software too.

You asked a lot of questions and I know the answers vary according to

individual circumstances. If I can share more to help, let me know,

Cheri

[Guest guest]

HI Kathy, Here are some answers to some of your question:

>What have you guys seen in your experience? Is ongoing therapy or monitoring

>

>important?

For my family therapy has been necessary to provide medical necessity letters

for unusual needs. With episodes of deterioration, therapist can lend

suggestions that coupled with the doctors assessment can provide more

balanced recommendations.

Are there intermittent times where therapy is of definite need

>.

>. .like, say, after a major regression with illness or stroke-like episode

>to

>speed recovery of skills OR will recovery occur spontaneously if it is

>going

>to occur at all?

I think it is hard to know exactly for sure to what degree therapy impacts

ones ability to recover from regression or from a stroke type event. However

therapy can show you new ways to deal with your " new " deficits and a good

therapist can assist you with finding appropriate pieces of equipment that may

be needed with a sudden change. I and two of my children have benefited

from therapy in this way. As a general rule, we do without therapy as often

as possible just to save our insurance dollars. When there has been a

significant change suddenly, both my and my children's docs have recommended

therapy, say post stroke type event.

What about for mild motor delays?

I have a 16 year old who has lost some of what he used to have versus delay

to begin with. We use therapy on a consult basis and on an as need basis

instead of ongoing.

Have you seen therapy

>

>make a difference?

If I may be honest and say, I have not seen therapy make a difference in and

of itself above and beyond what family members are already doing (I am

speaking in regard to all of us, but more particularly to my 7 year old who

is our most affected). I have seen therapy teach us new ways of doing the

same thing and assist with equipment needs and the implementation of ROM has

been helpful to my youngest. However, he still needs AFO's and I still am the

one to do the majority of his ROM. The therapy is typically not helpful, but

the information gained from therapy can give a whole new lease on life when

one learns a whole new way of doing something one lost.

Early on, I used to depend upon the therapist for equipment needs and

recommendations. By this point in time, I do my own equipment research

because I have very good understanding of our condition and needs. Most

therapist are not up on the latest and the there may be something more

appropriate that the therapist is not aware of. I am presently researching

walkers for my 7 year old presently and when I finally make my request, it

will be an informed decision! The therapist may need to write a letter of

need however as that generally will not be accepted from me.

What are the goals of therapy for your children?

This is individual per child, but overall, we like to have access to

therapist for input and to ask their suggestions and ideas with problem areas.

Sometimes my suggestions are better suited to our needs, sometimes the

therapist suggestions are better. Our goals for therapy is to have assistance

with information to empower us to be as independent as possible. If my child

needs daily therapy of some nature (as my does and my 16 year old is

supposed to-another topic) then we learn what needs to be done and carry it

out ourselves. When my youngest lost his speech, we instantly increased

speech therapy to find out what needed to be done to help him. Therapy did

not help him, but through a multi discipline evaluation done at a center that

does such, I found out what pieces of equipment he needed to move forward

with communications. Today I am usually one step ahead of the therapist in

that regard as I take the time to research my son's needs to insure he is

getting what s appropriate for needs.

More directly, we use PT to help with mobility issues like wheelchair,

walker, leg braces, etc.

OT we use more for activities of daily living needs like ways to access his

AAC device, bath seat, cervical neck collars, etc.

ST we use for AAC and to help assess changes in speech that occur. Some ST's

can help me find software too.

You asked a lot of questions and I know the answers vary according to

individual circumstances. If I can share more to help, let me know,

Cheri

[Guest guest]

HI Kathy, Here are some answers to some of your question:

>What have you guys seen in your experience? Is ongoing therapy or monitoring

>

>important?

For my family therapy has been necessary to provide medical necessity letters

for unusual needs. With episodes of deterioration, therapist can lend

suggestions that coupled with the doctors assessment can provide more

balanced recommendations.

Are there intermittent times where therapy is of definite need

>.

>. .like, say, after a major regression with illness or stroke-like episode

>to

>speed recovery of skills OR will recovery occur spontaneously if it is

>going

>to occur at all?

I think it is hard to know exactly for sure to what degree therapy impacts

ones ability to recover from regression or from a stroke type event. However

therapy can show you new ways to deal with your " new " deficits and a good

therapist can assist you with finding appropriate pieces of equipment that may

be needed with a sudden change. I and two of my children have benefited

from therapy in this way. As a general rule, we do without therapy as often

as possible just to save our insurance dollars. When there has been a

significant change suddenly, both my and my children's docs have recommended

therapy, say post stroke type event.

What about for mild motor delays?

I have a 16 year old who has lost some of what he used to have versus delay

to begin with. We use therapy on a consult basis and on an as need basis

instead of ongoing.

Have you seen therapy

>

>make a difference?

If I may be honest and say, I have not seen therapy make a difference in and

of itself above and beyond what family members are already doing (I am

speaking in regard to all of us, but more particularly to my 7 year old who

is our most affected). I have seen therapy teach us new ways of doing the

same thing and assist with equipment needs and the implementation of ROM has

been helpful to my youngest. However, he still needs AFO's and I still am the

one to do the majority of his ROM. The therapy is typically not helpful, but

the information gained from therapy can give a whole new lease on life when

one learns a whole new way of doing something one lost.

Early on, I used to depend upon the therapist for equipment needs and

recommendations. By this point in time, I do my own equipment research

because I have very good understanding of our condition and needs. Most

therapist are not up on the latest and the there may be something more

appropriate that the therapist is not aware of. I am presently researching

walkers for my 7 year old presently and when I finally make my request, it

will be an informed decision! The therapist may need to write a letter of

need however as that generally will not be accepted from me.

What are the goals of therapy for your children?

This is individual per child, but overall, we like to have access to

therapist for input and to ask their suggestions and ideas with problem areas.

Sometimes my suggestions are better suited to our needs, sometimes the

therapist suggestions are better. Our goals for therapy is to have assistance

with information to empower us to be as independent as possible. If my child

needs daily therapy of some nature (as my does and my 16 year old is

supposed to-another topic) then we learn what needs to be done and carry it

out ourselves. When my youngest lost his speech, we instantly increased

speech therapy to find out what needed to be done to help him. Therapy did

not help him, but through a multi discipline evaluation done at a center that

does such, I found out what pieces of equipment he needed to move forward

with communications. Today I am usually one step ahead of the therapist in

that regard as I take the time to research my son's needs to insure he is

getting what s appropriate for needs.

More directly, we use PT to help with mobility issues like wheelchair,

walker, leg braces, etc.

OT we use more for activities of daily living needs like ways to access his

AAC device, bath seat, cervical neck collars, etc.

ST we use for AAC and to help assess changes in speech that occur. Some ST's

can help me find software too.

You asked a lot of questions and I know the answers vary according to

individual circumstances. If I can share more to help, let me know,

Cheri

[Guest guest]

Hi Kathy,

receives OT but not PT. She would probably benefit from it, but with

Music therapy, Speech Therapy, and Adaptive PE we decided to concentrate on

the OT. I think you will find that when he gets to school and they start

(at age 3 by law) to provide these therapies as part of his day, it won't be

perceived by either of you as medical. I notice a big difference in

when she is or is not getting regular therapy. I think it does help and is

definitely worth the time if you can get the district to do it. ML

--

Lou

mom to ,14 Complex I & III (our happy,little entertainer); Jeff 16 and

Greg 10 (typical active boys)

----------

>From: KCorley309@...

>To: mitoonelist, mitochondrialonelist

>Subject: Benefits of PT and OT?

>Date: Tue, Nov 16, 1999, 8:59 AM

>

> From: KCorley309@...

>

> Hi, all -

>

> Just wondering what you all have to say about the benefits of physical and

> occupational therapy for mito disorders. Need some feedback for a variety of

> reasons . . . dealing with the school system, to name one.

>

> My son, , is three and has mitochondrial encephalomyopathy, complex I and

> III defects . . . he is age appropriate in cognitive, language, and social

> skills, but has pretty significant motor issues (though he is mobile). He

> has been in physical therapy (with one break) since he was 4 months old. He

> has been in occupational therapy since he was about 20 months. I feel that

> we have seen some improvement, but I guess I can't really know whether he

> would have seen that improvement anyway if he had not received therapy.

>

> We recently saw a doctor who is familiar with mitochondrial disorders. We

> were talking about how my focus since diagnosis has shifted to figuring out

> the best way to manage symptoms as aggressively as possible while

> " de-medicalizing " his life to the greatest extent feasible. He mentioned

> something about trimming away things like PT and OT which might or might not

> make a difference.

>

> What have you guys seen in your experience? Is ongoing therapy or monitoring

> important? Are there intermittent times where therapy is of definite need .

> . .like, say, after a major regression with illness or stroke-like episode to

> speed recovery of skills OR will recovery occur spontaneously if it is going

> to occur at all? What about for mild motor delays? Have you seen therapy

> make a difference? What are the goals of therapy for your children?

>

> I do know that after a stroke like episode last spring, lost motor

> skills. We tried to set up PT (he had " graduated " at that point) but it took

> some time to get insurance and so on in place. He recovered skills during

> that interim even though he did not have therapy. Of course, maybe he would

> have recovered more quickly . . .

>

> Hmmmmmm. Very interested to hear what others think on both sides of the

> issue!

>

> Kathy

>

> Kathy

>

> > Brought to you by www.imdn.org - an on-line support group for those

> affected by mitochondrial disease.

>

[Guest guest]

Hi Kathy,

receives OT but not PT. She would probably benefit from it, but with

Music therapy, Speech Therapy, and Adaptive PE we decided to concentrate on

the OT. I think you will find that when he gets to school and they start

(at age 3 by law) to provide these therapies as part of his day, it won't be

perceived by either of you as medical. I notice a big difference in

when she is or is not getting regular therapy. I think it does help and is

definitely worth the time if you can get the district to do it. ML

--

Lou

mom to ,14 Complex I & III (our happy,little entertainer); Jeff 16 and

Greg 10 (typical active boys)

----------

>From: KCorley309@...

>To: mitoonelist, mitochondrialonelist

>Subject: Benefits of PT and OT?

>Date: Tue, Nov 16, 1999, 8:59 AM

>

> From: KCorley309@...

>

> Hi, all -

>

> Just wondering what you all have to say about the benefits of physical and

> occupational therapy for mito disorders. Need some feedback for a variety of

> reasons . . . dealing with the school system, to name one.

>

> My son, , is three and has mitochondrial encephalomyopathy, complex I and

> III defects . . . he is age appropriate in cognitive, language, and social

> skills, but has pretty significant motor issues (though he is mobile). He

> has been in physical therapy (with one break) since he was 4 months old. He

> has been in occupational therapy since he was about 20 months. I feel that

> we have seen some improvement, but I guess I can't really know whether he

> would have seen that improvement anyway if he had not received therapy.

>

> We recently saw a doctor who is familiar with mitochondrial disorders. We

> were talking about how my focus since diagnosis has shifted to figuring out

> the best way to manage symptoms as aggressively as possible while

> " de-medicalizing " his life to the greatest extent feasible. He mentioned

> something about trimming away things like PT and OT which might or might not

> make a difference.

>

> What have you guys seen in your experience? Is ongoing therapy or monitoring

> important? Are there intermittent times where therapy is of definite need .

> . .like, say, after a major regression with illness or stroke-like episode to

> speed recovery of skills OR will recovery occur spontaneously if it is going

> to occur at all? What about for mild motor delays? Have you seen therapy

> make a difference? What are the goals of therapy for your children?

>

> I do know that after a stroke like episode last spring, lost motor

> skills. We tried to set up PT (he had " graduated " at that point) but it took

> some time to get insurance and so on in place. He recovered skills during

> that interim even though he did not have therapy. Of course, maybe he would

> have recovered more quickly . . .

>

> Hmmmmmm. Very interested to hear what others think on both sides of the

> issue!

>

> Kathy

>

> Kathy

>

> > Brought to you by www.imdn.org - an on-line support group for those

> affected by mitochondrial disease.

>

[Guest guest]

Hi,

Do I understand that your child is in the school district's Early

Childhood Special Education? If so then they do indeed need to provide OT

and PT if it's needed!!!!!! He should be even if the only thing " wrong "

with him is his gross motor skills. And then if that's the main reason for

placement then they must provide at least PT. I reread your original post

and sounds like he would qualify based on the fine and gross motor delays.

No, he WILL qualify for ECSE based on his fine and gross motor delays. It

sounds like your school is trying to pull a fast one. Does your school have

preschool for normal kids? Most don't and if he's in your school's

preschool program, that is special education. However, the OT and PT need

to be academically related. That is easy though. ) You can list all

kinds of goals. For example, my uses a power chair. In years past

one of his PT goals was to navigate safely through the school campus.

That's also one of his APE goals this year. Lately the goals have been to

keep him stretched out so he can sit in his chair and do his school work

(ie: meet his IEP goals). For fine motor his goals include accessing the

keyboard so he can continue to do his work (he cannot write at all and uses

a laptop for all work). As for you question about whether OT/PT is

beneficial for mito kids, well that's a different story. It's true that

you cannot push too hard or it can hurt them. That's push PT too much, not

OT. I will use my kids as an example. They both are regressing and will

never be strong or ever gain what they have lost. They fatigue more this

year so we have cut back, a little, on the direct but not the consult time.

I think it's beneficial though, because even though my kids are VERY

hypotonic, they do get stiff. It's important to keep them limber and

stretched to the best they can be. So I would say PT is beneficial.

Especially if the child is in a wheelchair! OT should also be given if fine

motor is involved. I think what's important is you look at your child and

see if it's benefitting him or is it frustrating him. All the therapy in

the world will do no good if the kid won't do it. It has to be fun. We

have good therapists and the kids look forward to therapy. In our case the

OT/PT co-treat and it works our well. Especially with . He needs at

least 4 hands to keep him upright in the proper position! ) Most of the

excersises they do are passive type things. They do no weight bearing or

strengthening of any kind. It just makes the kids tired.

When your son gets to Kindergarten and beyond when he's going full

days, definately put in the IEP that he will be allowed rest breaks when

needed. Make sure you specify where you want those rest breaks or they

might just stick him on the floor. Which is fine if you want that. Just

make sure they provide a mat then. I have go in the nurses office and

the aide lays him on the couch and massages his feet and back. ) I kid

you not! That child has everyone at that school wrapped around his little

finger. ) I have to be the bad guy and tell them to stop taking out

of class!

I don't if I was helpful or even got the facts straight, but I hope I

helped. ) Good luck and keep us posted...

Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker

-8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

[Guest guest]

Hi,

Do I understand that your child is in the school district's Early

Childhood Special Education? If so then they do indeed need to provide OT

and PT if it's needed!!!!!! He should be even if the only thing " wrong "

with him is his gross motor skills. And then if that's the main reason for

placement then they must provide at least PT. I reread your original post

and sounds like he would qualify based on the fine and gross motor delays.

No, he WILL qualify for ECSE based on his fine and gross motor delays. It

sounds like your school is trying to pull a fast one. Does your school have

preschool for normal kids? Most don't and if he's in your school's

preschool program, that is special education. However, the OT and PT need

to be academically related. That is easy though. ) You can list all

kinds of goals. For example, my uses a power chair. In years past

one of his PT goals was to navigate safely through the school campus.

That's also one of his APE goals this year. Lately the goals have been to

keep him stretched out so he can sit in his chair and do his school work

(ie: meet his IEP goals). For fine motor his goals include accessing the

keyboard so he can continue to do his work (he cannot write at all and uses

a laptop for all work). As for you question about whether OT/PT is

beneficial for mito kids, well that's a different story. It's true that

you cannot push too hard or it can hurt them. That's push PT too much, not

OT. I will use my kids as an example. They both are regressing and will

never be strong or ever gain what they have lost. They fatigue more this

year so we have cut back, a little, on the direct but not the consult time.

I think it's beneficial though, because even though my kids are VERY

hypotonic, they do get stiff. It's important to keep them limber and

stretched to the best they can be. So I would say PT is beneficial.

Especially if the child is in a wheelchair! OT should also be given if fine

motor is involved. I think what's important is you look at your child and

see if it's benefitting him or is it frustrating him. All the therapy in

the world will do no good if the kid won't do it. It has to be fun. We

have good therapists and the kids look forward to therapy. In our case the

OT/PT co-treat and it works our well. Especially with . He needs at

least 4 hands to keep him upright in the proper position! ) Most of the

excersises they do are passive type things. They do no weight bearing or

strengthening of any kind. It just makes the kids tired.

When your son gets to Kindergarten and beyond when he's going full

days, definately put in the IEP that he will be allowed rest breaks when

needed. Make sure you specify where you want those rest breaks or they

might just stick him on the floor. Which is fine if you want that. Just

make sure they provide a mat then. I have go in the nurses office and

the aide lays him on the couch and massages his feet and back. ) I kid

you not! That child has everyone at that school wrapped around his little

finger. ) I have to be the bad guy and tell them to stop taking out

of class!

I don't if I was helpful or even got the facts straight, but I hope I

helped. ) Good luck and keep us posted...

Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker

-8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

[Guest guest]

Hi,

Do I understand that your child is in the school district's Early

Childhood Special Education? If so then they do indeed need to provide OT

and PT if it's needed!!!!!! He should be even if the only thing " wrong "

with him is his gross motor skills. And then if that's the main reason for

placement then they must provide at least PT. I reread your original post

and sounds like he would qualify based on the fine and gross motor delays.

No, he WILL qualify for ECSE based on his fine and gross motor delays. It

sounds like your school is trying to pull a fast one. Does your school have

preschool for normal kids? Most don't and if he's in your school's

preschool program, that is special education. However, the OT and PT need

to be academically related. That is easy though. ) You can list all

kinds of goals. For example, my uses a power chair. In years past

one of his PT goals was to navigate safely through the school campus.

That's also one of his APE goals this year. Lately the goals have been to

keep him stretched out so he can sit in his chair and do his school work

(ie: meet his IEP goals). For fine motor his goals include accessing the

keyboard so he can continue to do his work (he cannot write at all and uses

a laptop for all work). As for you question about whether OT/PT is

beneficial for mito kids, well that's a different story. It's true that

you cannot push too hard or it can hurt them. That's push PT too much, not

OT. I will use my kids as an example. They both are regressing and will

never be strong or ever gain what they have lost. They fatigue more this

year so we have cut back, a little, on the direct but not the consult time.

I think it's beneficial though, because even though my kids are VERY

hypotonic, they do get stiff. It's important to keep them limber and

stretched to the best they can be. So I would say PT is beneficial.

Especially if the child is in a wheelchair! OT should also be given if fine

motor is involved. I think what's important is you look at your child and

see if it's benefitting him or is it frustrating him. All the therapy in

the world will do no good if the kid won't do it. It has to be fun. We

have good therapists and the kids look forward to therapy. In our case the

OT/PT co-treat and it works our well. Especially with . He needs at

least 4 hands to keep him upright in the proper position! ) Most of the

excersises they do are passive type things. They do no weight bearing or

strengthening of any kind. It just makes the kids tired.

When your son gets to Kindergarten and beyond when he's going full

days, definately put in the IEP that he will be allowed rest breaks when

needed. Make sure you specify where you want those rest breaks or they

might just stick him on the floor. Which is fine if you want that. Just

make sure they provide a mat then. I have go in the nurses office and

the aide lays him on the couch and massages his feet and back. ) I kid

you not! That child has everyone at that school wrapped around his little

finger. ) I have to be the bad guy and tell them to stop taking out

of class!

I don't if I was helpful or even got the facts straight, but I hope I

helped. ) Good luck and keep us posted...

Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker

-8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

[Guest guest]

In a message dated 11/16/99 9:42:59 PM Eastern Standard Time,

Cheri77777@... writes:

<< You asked a lot of questions and I know the answers vary according to

individual circumstances. If I can share more to help, let me know,

Cheri >>

Cheri! This information is invaluable. Thanks for taking the time to answer

my questions. It actually has helped to see other reasons why therapy is

beneficial even if " catching up " with age appropriate skills is something

that may not be possible.

I appreciate it!!!!!!

Kathy

[Guest guest]

In a message dated 11/16/99 9:42:59 PM Eastern Standard Time,

Cheri77777@... writes:

<< You asked a lot of questions and I know the answers vary according to

individual circumstances. If I can share more to help, let me know,

Cheri >>

Cheri! This information is invaluable. Thanks for taking the time to answer

my questions. It actually has helped to see other reasons why therapy is

beneficial even if " catching up " with age appropriate skills is something

that may not be possible.

I appreciate it!!!!!!

Kathy

[Guest guest]

Kathy,

would qualify for special services under medically impaired. As Terri

said, the school system has to provide appropriate services and OT/PT should not

require to move to a different class....they are ancillary services.

I have talked to you some about 's OT/PT history and I do think you should

press the school to provide what YOU want for in this area. If it is a

home program, with periodic re-evals by the therapist, they should PROVIDE it.

If it means the therapists visit his classroom and provide the teacher with ways

to incorporate OT/PT goals into his daily schedule without having him pulled out

of class for therapy, they should DO it. You CAN get them to do it, it is HIS

right!

I know (believe me, I KNOW) that sense of not wanting to rock the boat or make

the school system mad. I used to work for a pediatric rehab facility (before I

*ever* dreamed we would need services for !) and I had heard horror stories

about IEP meetings. When faced with the reality that *we* would be having IEP's

for , I made up my mind that I was going to be the nice, easy-to-get-along

with parent so that they would always treat him good.

I lied! I started out that way but over the course of the years, I have found

that if I DON'T stand up for him, no one will and he will get shoved aside and

lost in the shuffle. Granted, there are ways to go about it and I always have

tried to do it the right way. But, I once had to end an IEP meeting and yell

504 violation in order to get what needed.....they brought in all these

people from Nashville and in 5 minutes, they determined that I was right.

Subsequently, there were no hard feelings, has ALWAYS been treated with

respect AND love (he had BETTER be!), and the system and I have a new respect

for each other. Many times we have had to disagree, acknowledge that we did,

and come to terms.

Hang in there and let me know how it goes!

[Guest guest]

Kathy,

would qualify for special services under medically impaired. As Terri

said, the school system has to provide appropriate services and OT/PT should not

require to move to a different class....they are ancillary services.

I have talked to you some about 's OT/PT history and I do think you should

press the school to provide what YOU want for in this area. If it is a

home program, with periodic re-evals by the therapist, they should PROVIDE it.

If it means the therapists visit his classroom and provide the teacher with ways

to incorporate OT/PT goals into his daily schedule without having him pulled out

of class for therapy, they should DO it. You CAN get them to do it, it is HIS

right!

I know (believe me, I KNOW) that sense of not wanting to rock the boat or make

the school system mad. I used to work for a pediatric rehab facility (before I

*ever* dreamed we would need services for !) and I had heard horror stories

about IEP meetings. When faced with the reality that *we* would be having IEP's

for , I made up my mind that I was going to be the nice, easy-to-get-along

with parent so that they would always treat him good.

I lied! I started out that way but over the course of the years, I have found

that if I DON'T stand up for him, no one will and he will get shoved aside and

lost in the shuffle. Granted, there are ways to go about it and I always have

tried to do it the right way. But, I once had to end an IEP meeting and yell

504 violation in order to get what needed.....they brought in all these

people from Nashville and in 5 minutes, they determined that I was right.

Subsequently, there were no hard feelings, has ALWAYS been treated with

respect AND love (he had BETTER be!), and the system and I have a new respect

for each other. Many times we have had to disagree, acknowledge that we did,

and come to terms.

Hang in there and let me know how it goes!

[Guest guest]

In a message dated 11/17/99 12:38:02 AM Eastern Standard Time, jscb@...

writes:

<< Do I understand that your child is in the school district's Early

Childhood Special Education? If so then they do indeed need to provide OT

and PT if it's needed!!!!!! He should be even if the only thing " wrong "

with him is his gross motor skills. >>

Sue -

Thanks for your input and your support!!!!!!!!

He is not being served by the school district in special education right now.

He is being served through the Early Intervention system and is

transitioning to the school district (he turns three on Saturday). He

qualifies under the category of " other health impairment " rather than as

" developmentally delayed " . Developmental delay requires a 25% or greater

delay in 2 or more functional areas, or a 40% delay in one area. Fine and

gross motor are lumped into one area as " motor skills " , and has a 35%

delay in the motor area. Therefore, we qualified him as other health

impaired which requires a Form 12 certification from a physician of a life

long impairment that impacts the child's educational needs. We have a form

12 stating that needs support for his fine and gross motor skills,

therefore he qualifies. The issue is that they claim that unless I enroll

him in the only setting they have available, which is a class for multiply

handicapped, non-verbal, non-mobile and MR children, he cannot have PT and OT

monitoring. That setting is not appropriate for because he is mobile,

verbal, and cognitively within normal limits. He needs the socialization in

an inclusive setting with typically developing children. There are NO

typically developing children in this classroom. The children are severely

impaired. While it might meet 's motor needs, it would not be beneficial

for his language, social, and cognitive development. They do not have

another placement available, so I have placed him in a private preschool

asking them only to provide the OT and PT monitoring. They will not do it

(YET!).

This is clearly wrong . . . the IDEA mandates a free appropriate public

education in the least restrictive environment possible with a range of

alternative placement options based upon the individual needs of the child.

I plan to pursue it . . . but, gosh, I am tired right now!!!!

Nice to have others out there validate my feelings. I appreciate you!

Kathy

[Guest guest]

In a message dated 11/17/99 12:38:02 AM Eastern Standard Time, jscb@...

writes:

<< Do I understand that your child is in the school district's Early

Childhood Special Education? If so then they do indeed need to provide OT

and PT if it's needed!!!!!! He should be even if the only thing " wrong "

with him is his gross motor skills. >>

Sue -

Thanks for your input and your support!!!!!!!!

He is not being served by the school district in special education right now.

He is being served through the Early Intervention system and is

transitioning to the school district (he turns three on Saturday). He

qualifies under the category of " other health impairment " rather than as

" developmentally delayed " . Developmental delay requires a 25% or greater

delay in 2 or more functional areas, or a 40% delay in one area. Fine and

gross motor are lumped into one area as " motor skills " , and has a 35%

delay in the motor area. Therefore, we qualified him as other health

impaired which requires a Form 12 certification from a physician of a life

long impairment that impacts the child's educational needs. We have a form

12 stating that needs support for his fine and gross motor skills,

therefore he qualifies. The issue is that they claim that unless I enroll

him in the only setting they have available, which is a class for multiply

handicapped, non-verbal, non-mobile and MR children, he cannot have PT and OT

monitoring. That setting is not appropriate for because he is mobile,

verbal, and cognitively within normal limits. He needs the socialization in

an inclusive setting with typically developing children. There are NO

typically developing children in this classroom. The children are severely

impaired. While it might meet 's motor needs, it would not be beneficial

for his language, social, and cognitive development. They do not have

another placement available, so I have placed him in a private preschool

asking them only to provide the OT and PT monitoring. They will not do it

(YET!).

This is clearly wrong . . . the IDEA mandates a free appropriate public

education in the least restrictive environment possible with a range of

alternative placement options based upon the individual needs of the child.

I plan to pursue it . . . but, gosh, I am tired right now!!!!

Nice to have others out there validate my feelings. I appreciate you!

Kathy

[Guest guest]

In a message dated 11/17/99 6:47:21 PM Eastern Standard Time,

sfitzger@... writes:

<< But my son is only mildly delayed in some areas and is

very bright overall and I am so scared that he will regress if placed in an

environment with severely

autistic and mentally retarded children. Of course money is a big issue

here, and the more programs they

get my son into the more grants the school gets. At least that's how it

works in my jurisdiction.

>>

I think in our case it is more an issue of the school system knows they are

required to provide the least restrictive setting possible, but they don't

have another setting readily available and they don't want to have to pay for

his private preschool (which I didn't even ask them to do). So they are

disqualifying him unless I will enroll him in the more restrictive setting

that is already established and easier for them, though it will not

adequately meet his needs.

I, too, see the value in specialized settings. There are some children whose

needs are possibly better served in a specialized setting with professionals

who have specialized knowledge and training (though I am a HUGE proponent of

inclusion whenever possible, provided that the supports are in place for

meeting the child's special needs). I think that is why the IDEA mandates

least restrictive environment with a range of alternative placement options

based upon the child's individual needs. I just think that a more

restrictive setting is not appropriate for .

Hope your situation works out for you . . .

Kathy

[Guest guest]

In a message dated 11/17/99 6:47:21 PM Eastern Standard Time,

sfitzger@... writes:

<< But my son is only mildly delayed in some areas and is

very bright overall and I am so scared that he will regress if placed in an

environment with severely

autistic and mentally retarded children. Of course money is a big issue

here, and the more programs they

get my son into the more grants the school gets. At least that's how it

works in my jurisdiction.

>>

I think in our case it is more an issue of the school system knows they are

required to provide the least restrictive setting possible, but they don't

have another setting readily available and they don't want to have to pay for

his private preschool (which I didn't even ask them to do). So they are

disqualifying him unless I will enroll him in the more restrictive setting

that is already established and easier for them, though it will not

adequately meet his needs.

I, too, see the value in specialized settings. There are some children whose

needs are possibly better served in a specialized setting with professionals

who have specialized knowledge and training (though I am a HUGE proponent of

inclusion whenever possible, provided that the supports are in place for

meeting the child's special needs). I think that is why the IDEA mandates

least restrictive environment with a range of alternative placement options

based upon the child's individual needs. I just think that a more

restrictive setting is not appropriate for .

Hope your situation works out for you . . .

Kathy

[Guest guest]

In a message dated 11/17/99 7:51:19 PM Eastern Standard Time,

KnoxVolNut@... writes:

<< Subsequently, there were no hard feelings, has ALWAYS been treated

with respect AND love (he had BETTER be!), and the system and I have a new

respect for each other. Many times we have had to disagree, acknowledge that

we did, and come to terms.

>>

Thanks, as always, for your support, ! I am new to this but I know

that I am correct about my interpretation of the IDEA. I am going to press

ahead. I will keep you updated!

Kathy

[Guest guest]

In a message dated 11/17/99 7:51:19 PM Eastern Standard Time,

KnoxVolNut@... writes:

<< Subsequently, there were no hard feelings, has ALWAYS been treated

with respect AND love (he had BETTER be!), and the system and I have a new

respect for each other. Many times we have had to disagree, acknowledge that

we did, and come to terms.

>>

Thanks, as always, for your support, ! I am new to this but I know

that I am correct about my interpretation of the IDEA. I am going to press

ahead. I will keep you updated!

Kathy

[Guest guest]

Hi Kathy,

I understand about being tired!! ) The way I'm thinking you should

approach this situation is like this. Think of the goals you want for your

child. Things like, will interact with non-disabled peers, etc. Any goals

that are as far from what the school's placement can provide. Write that

IEP so there is no placement choice BUT the private preschool with OT/PT

services from the school. And remember, don't tell them this private school

is the *BEST* place for your child, they don't have to provide the BEST of

anything, but they do need to provide what's appropriate. I'm sure you know

this already, so excuse me if I'm preaching to the choir here. ) Best of

luck and keep us updated. )

Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker

-8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

> Thanks for your input and your support!!!!!!!!

>

> He is not being served by the school district in special education right

now.

> He is being served through the Early Intervention system and is

> transitioning to the school district (he turns three on Saturday). He

> qualifies under the category of " other health impairment " rather than as

> " developmentally delayed " . Developmental delay requires a 25% or greater

> delay in 2 or more functional areas, or a 40% delay in one area. Fine and

> gross motor are lumped into one area as " motor skills " , and has a 35%

> delay in the motor area. Therefore, we qualified him as other health

> impaired which requires a Form 12 certification from a physician of a life

> long impairment that impacts the child's educational needs. We have a

form

> 12 stating that needs support for his fine and gross motor skills,

> therefore he qualifies. The issue is that they claim that unless I enroll

> him in the only setting they have available, which is a class for multiply

> handicapped, non-verbal, non-mobile and MR children, he cannot have PT and

OT

> monitoring. That setting is not appropriate for because he is

mobile,

> verbal, and cognitively within normal limits. He needs the socialization

in

> an inclusive setting with typically developing children. There are NO

> typically developing children in this classroom. The children are

severely

> impaired. While it might meet 's motor needs, it would not be

beneficial

> for his language, social, and cognitive development. They do not have

> another placement available, so I have placed him in a private preschool

> asking them only to provide the OT and PT monitoring. They will not do it

> (YET!).

>

> This is clearly wrong . . . the IDEA mandates a free appropriate public

> education in the least restrictive environment possible with a range of

> alternative placement options based upon the individual needs of the

child.

> I plan to pursue it . . . but, gosh, I am tired right now!!!!

>

> Nice to have others out there validate my feelings. I appreciate you!

>

> Kathy

[Guest guest]

Hi Kathy,

I understand about being tired!! ) The way I'm thinking you should

approach this situation is like this. Think of the goals you want for your

child. Things like, will interact with non-disabled peers, etc. Any goals

that are as far from what the school's placement can provide. Write that

IEP so there is no placement choice BUT the private preschool with OT/PT

services from the school. And remember, don't tell them this private school

is the *BEST* place for your child, they don't have to provide the BEST of

anything, but they do need to provide what's appropriate. I'm sure you know

this already, so excuse me if I'm preaching to the choir here. ) Best of

luck and keep us updated. )

Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker

-8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

> Thanks for your input and your support!!!!!!!!

>

> He is not being served by the school district in special education right

now.

> He is being served through the Early Intervention system and is

> transitioning to the school district (he turns three on Saturday). He

> qualifies under the category of " other health impairment " rather than as

> " developmentally delayed " . Developmental delay requires a 25% or greater

> delay in 2 or more functional areas, or a 40% delay in one area. Fine and

> gross motor are lumped into one area as " motor skills " , and has a 35%

> delay in the motor area. Therefore, we qualified him as other health

> impaired which requires a Form 12 certification from a physician of a life

> long impairment that impacts the child's educational needs. We have a

form

> 12 stating that needs support for his fine and gross motor skills,

> therefore he qualifies. The issue is that they claim that unless I enroll

> him in the only setting they have available, which is a class for multiply

> handicapped, non-verbal, non-mobile and MR children, he cannot have PT and

OT

> monitoring. That setting is not appropriate for because he is

mobile,

> verbal, and cognitively within normal limits. He needs the socialization

in

> an inclusive setting with typically developing children. There are NO

> typically developing children in this classroom. The children are

severely

> impaired. While it might meet 's motor needs, it would not be

beneficial

> for his language, social, and cognitive development. They do not have

> another placement available, so I have placed him in a private preschool

> asking them only to provide the OT and PT monitoring. They will not do it

> (YET!).

>

> This is clearly wrong . . . the IDEA mandates a free appropriate public

> education in the least restrictive environment possible with a range of

> alternative placement options based upon the individual needs of the

child.

> I plan to pursue it . . . but, gosh, I am tired right now!!!!

>

> Nice to have others out there validate my feelings. I appreciate you!

>

> Kathy

[Guest guest]

In a message dated 11/18/99 1:49:42 AM Eastern Standard Time, jscb@...

writes:

<< Best of

luck and keep us updated. )

>>

Thanks, Sue! I will.

Kathy

[Guest guest]

Kathy,

Please *do* keep me updated! I remember so well when was 's age and we

were starting on the school journey. I will be thinking about you - let me know

if I can help in any way at all.

After reading more of your posts, what has really become clear is that your

system has to either (1) set up a new class that is appropriate for - they

can't try to " make him fit " into what they already have for their convenience)

or (2) pay for his private program. From my experiences, you are handling this

just right and I'm confident the end result will be what is best for .

Best Regards,

>Thanks, as always, for your support, ! I am new >to this but I know

that I am correct about my >interpretation of the IDEA. I am going to press

ahead. >I will keep you updated!

> Kathy

[Guest guest]

Kathy,

Please *do* keep me updated! I remember so well when was 's age and we

were starting on the school journey. I will be thinking about you - let me know

if I can help in any way at all.

After reading more of your posts, what has really become clear is that your

system has to either (1) set up a new class that is appropriate for - they

can't try to " make him fit " into what they already have for their convenience)

or (2) pay for his private program. From my experiences, you are handling this

just right and I'm confident the end result will be what is best for .

Best Regards,

>Thanks, as always, for your support, ! I am new >to this but I know

that I am correct about my >interpretation of the IDEA. I am going to press

ahead. >I will keep you updated!

> Kathy

[Guest guest]

Kathy,

I don't have any experience with school provided OT or PT, because

Caitlin has been classified as Home bound tutored and has been primarily

educated at home until just recently. We've done the private PT route

and I can attest to it's value. There was a time when we had to stop it

because she was too sick. Then we were a little slow in starting it

back up and she really lost muscle mass.

When we really got aggressive about the PT again, she had an increase in

stamina as well as muscle mass. It was also at the same time that we

started her on polycitra and that was also thought to be of benefit.

Between the two, she also gained 20 pounds. Muscle weighs more!

We try to keep her active now, as much as she is able. We've found

swimming to be very helpful. For both Caitlin and I it seems that the

more we swim the better our muscle function is, and the less active we

are, the faster we lose that function......... even if it's just a few

minutes each day.

Jeannine

[Guest guest]

Kathy,

I don't have any experience with school provided OT or PT, because

Caitlin has been classified as Home bound tutored and has been primarily

educated at home until just recently. We've done the private PT route

and I can attest to it's value. There was a time when we had to stop it

because she was too sick. Then we were a little slow in starting it

back up and she really lost muscle mass.

When we really got aggressive about the PT again, she had an increase in

stamina as well as muscle mass. It was also at the same time that we

started her on polycitra and that was also thought to be of benefit.

Between the two, she also gained 20 pounds. Muscle weighs more!

We try to keep her active now, as much as she is able. We've found

swimming to be very helpful. For both Caitlin and I it seems that the

more we swim the better our muscle function is, and the less active we

are, the faster we lose that function......... even if it's just a few

minutes each day.

Jeannine