Re: Request to Listserve: Wishlist to Educators

[Guest guest]

Katy,

I think your idea is a good one, but I also think we have to be

careful when addressing educators. Remember, I am a special ed

teacher as well as a mom of an RSS teen, so I can see both sides of

the coin, so to speak.

When we begin to make requests/demands for our RSS children, I think

we have to be very careful. It is good to make a long, detailed

list, but then I think we have to sort through it and pick out the

really important parts. It is very difficult, as an educator of many

children, to try to meet the individual needs of every single child

and then I begin to feel overwhelmed and even a bit angry/resentful.

It is not that I don't want to do things to help my students. It's

just that so many parents think that they can pose these lists and

expect every thing on it to be done and it just cannot all be done.

I will give you a personal example. We are in the process of going

through a transition for Max from 8th grade in private school to 9th

grade in our local public high school. We met with the child study

team, explained about RSS, described Max's needs in general with RSS

and now his very unique needs with his dysmotility and the recent

PICC line and TPN. By the time we were done listing all of the

things we wanted, everyone just looked around the room and did not

know where to start. I quickly realized that what I had to do was

then sort through everything and prioritize. Some of what we were

expecting from the school and special ed teachers were more important

than others and I felt that we would have greater success if we

focused on the more important ones.

I know that our children are entitled to a " free and appropriate

education, " one that is in the " least restricted environment, " but

our kids are not the only ones there and we don't stand much of a

chance of getting anything in a positive way, with a postive

attitude, if we rush in and demand the moon, sun and stars, so to

speak.

I hope I am not making anyone angry by writing this, but I am

speaking from experience on both sides and I want to be able to help,

not create a flurry of angry responses. Our kids are definitely at

risk, have special needs, and need to be looked after, but there are

a lot of kids like that popping up all the time. We have to take a

look at what the school offers, then use that, and then tweak the

system to get a few more things. Gradually, we can add more, if

necessary and it won't seem so overwhelming.

I hope that in my drugged haze I am not making a fool of myself and I

am making sense. I just think that so many of us parents think that

we can now go into school, demand that all of our child's needs/wants

be met and that they will be. What will happen in most cases is that

a poor relationship will develop and both sides will lose out.

Jodi

[Guest guest]

Hi Jodi,

You bring up good points....! The intent of my request isn't to

recreate an IEP (a detailed list of specific things RSS kids need),

but rather, a first step for educators who write me and ask what they

need to know about RSS. I'll share with all of you (look below) what

I wrote back to one pre-school teacher. After I sent it, it occurred

to me that I would like to get parents' perspective as well, hence my

request to all of you.

I think Jodi brings up an excellent point about how to manage the

detailed requests as we proceed through the education process. In

the U.S. this will involve IEPs..in other countries, other processes

are used to assess special needs. I agree completely that the most

important aspect of our children's education will be the mutual

respect and communication we have with our children's educators and

therapists. Going into a meeting with a grocery list of needs would

naturally intimidate anyone..

Anyway, take a look at what I recently wrote to the preschool

teacher...let me know what you would add or change (or delete!). And

thanks again, Jodi. Your comments were very insightful. I know that

with our son , we spend as much time figuring out how to best

communicate our requests to the special studies team, as we do in

figuring out what those needs might be! Prioritization is key!

Katy's email to an educator who recently wrote her:

ADVICE TO THE EDUCATOR WHO WILL BE WORKING WITH AN RSS CHILD:

1. If you haven't done so already, go to

http://www.magicfoundation.org/divisions/rss.htm. This will provide

you with basics of RSS. I am assuming (hoping!!) that the child's

parents are involved with MAGIC and have been sharing information

with you too.

2. If you join MAGIC (or if the child's parents joined) you can get

free copies of any number of over 100 articles and research

information pertaining to RSS, growth hormone therapy, therapies,

etc...

3. As far as younger RSS pre-schoolers, typically these are the

following considerations educators and parents need to consider:

a. Provide plenty of opportunities for the child to snack on high

protein, high complex carbohydrates throughout the day. Hypoglycemia

is a real concern, and hypoglycemic episodes can lead to learning

disabilities, mood swings, irratibility, etc.

b. If the child has a feeding tube, work with the parents to learn

how to ensure the tube should be monitored.

c. Make sure the child has access to speech, physical, social and

occupational assessments and therapies. RSS children (not all) can

experience hypotonia (weak muscles), articulation problems, difficulty

with handwriting.

d. If shortness is impeding normal progress, make sure the child has

access to correctly sized desks, chairs, stools, etc...

e. Most important!: Communicate consistently and constantly with the

parents. RSS parents tend to worry about what is happening during

the day with their children: are they eating well? how are they

getting along with peers? how do developmental milestones compare

with other children? is the

child being isolated or encouraged to particpate in group activities?

f. If the parents need assistance with insurance companies to get

coverage for therapies, including Growth Hormone, Speech, etc. make

sure you can provide them with any assessments, written evaluations,

your own caring observations, etc..

-- In RSS-Support , " magicrss3 " wrote:

> Katy,

>

> I think your idea is a good one, but I also think we have to be

> careful when addressing educators. Remember, I am a special ed

> teacher as well as a mom of an RSS teen, so I can see both sides of

> the coin, so to speak.

>

> When we begin to make requests/demands for our RSS children, I

think

> we have to be very careful. It is good to make a long, detailed

> list, but then I think we have to sort through it and pick out the

> really important parts. It is very difficult, as an educator of

many

> children, to try to meet the individual needs of every single child

> and then I begin to feel overwhelmed and even a bit

angry/resentful.

> It is not that I don't want to do things to help my students. It's

> just that so many parents think that they can pose these lists and

> expect every thing on it to be done and it just cannot all be done.

>

> I will give you a personal example. We are in the process of going

> through a transition for Max from 8th grade in private school to

9th

> grade in our local public high school. We met with the child study

> team, explained about RSS, described Max's needs in general with

RSS

> and now his very unique needs with his dysmotility and the recent

> PICC line and TPN. By the time we were done listing all of the

> things we wanted, everyone just looked around the room and did not

> know where to start. I quickly realized that what I had to do was

> then sort through everything and prioritize. Some of what we were

> expecting from the school and special ed teachers were more

important

> than others and I felt that we would have greater success if we

> focused on the more important ones.

>

> I know that our children are entitled to a " free and appropriate

> education, " one that is in the " least restricted environment, " but

> our kids are not the only ones there and we don't stand much of a

> chance of getting anything in a positive way, with a postive

> attitude, if we rush in and demand the moon, sun and stars, so to

> speak.

>

> I hope I am not making anyone angry by writing this, but I am

> speaking from experience on both sides and I want to be able to

help,

> not create a flurry of angry responses. Our kids are definitely at

> risk, have special needs, and need to be looked after, but there

are

> a lot of kids like that popping up all the time. We have to take a

> look at what the school offers, then use that, and then tweak the

> system to get a few more things. Gradually, we can add more, if

> necessary and it won't seem so overwhelming.

>

> I hope that in my drugged haze I am not making a fool of myself and

I

> am making sense. I just think that so many of us parents think

that

> we can now go into school, demand that all of our child's

needs/wants

> be met and that they will be. What will happen in most cases is

that

> a poor relationship will develop and both sides will lose out.

>

> Jodi

[Guest guest]

Katy

I love what you have written. I think it is quite excellent. One thing that

I find is a problem in my school......it occurs with a diabetic child, a

child on ritalin and Adam. They all " need " to eat small frequent meals. We

have a few idiots on staff who refuse to allow them to eat if they " fooled

around " during recess etc. I have tried to defend all of these children by

saying that they may or may not eat according to " the clock " and unless it

is an incredibly distracting moment, they should be allowed to munch on a

couple of cookies when THEY deem they need it. I hate these teachers (and I

can say it, being a teacher) who think they control everything........they

just want to cause trouble and will go out of their way just to stir it up.

Trust me, I have defended many students in my school on this exact subject

(with doctor's notes) that these teachers have no business challenging. But

they lack such self esteem that they will do anything to exert their

" power " . Can you tell I'm a bit bitter on this? Had a huge discussion on

Thursday with the french teacher over a student with ritalin. There is a doc

note saying eat whenever she wants!!! This one wanted to challenge it.

UGH>>>>

I think what you have written is well done. As a teacher I would appreciate

that guidance.

Debby

Re: Request to Listserve: Wishlist to Educators

> Hi Jodi,

> You bring up good points....! The intent of my request isn't to

> recreate an IEP (a detailed list of specific things RSS kids need),

> but rather, a first step for educators who write me and ask what they

> need to know about RSS. I'll share with all of you (look below) what

> I wrote back to one pre-school teacher. After I sent it, it occurred

> to me that I would like to get parents' perspective as well, hence my

> request to all of you.

>

> I think Jodi brings up an excellent point about how to manage the

> detailed requests as we proceed through the education process. In

> the U.S. this will involve IEPs..in other countries, other processes

> are used to assess special needs. I agree completely that the most

> important aspect of our children's education will be the mutual

> respect and communication we have with our children's educators and

> therapists. Going into a meeting with a grocery list of needs would

> naturally intimidate anyone..

>

> Anyway, take a look at what I recently wrote to the preschool

> teacher...let me know what you would add or change (or delete!). And

> thanks again, Jodi. Your comments were very insightful. I know that

> with our son , we spend as much time figuring out how to best

> communicate our requests to the special studies team, as we do in

> figuring out what those needs might be! Prioritization is key!

>

> Katy's email to an educator who recently wrote her:

> ADVICE TO THE EDUCATOR WHO WILL BE WORKING WITH AN RSS CHILD:

>

> 1. If you haven't done so already, go to

> http://www.magicfoundation.org/divisions/rss.htm. This will provide

> you with basics of RSS. I am assuming (hoping!!) that the child's

> parents are involved with MAGIC and have been sharing information

> with you too.

>

> 2. If you join MAGIC (or if the child's parents joined) you can get

> free copies of any number of over 100 articles and research

> information pertaining to RSS, growth hormone therapy, therapies,

> etc...

>

> 3. As far as younger RSS pre-schoolers, typically these are the

> following considerations educators and parents need to consider:

> a. Provide plenty of opportunities for the child to snack on high

> protein, high complex carbohydrates throughout the day. Hypoglycemia

> is a real concern, and hypoglycemic episodes can lead to learning

> disabilities, mood swings, irratibility, etc.

> b. If the child has a feeding tube, work with the parents to learn

> how to ensure the tube should be monitored.

> c. Make sure the child has access to speech, physical, social and

> occupational assessments and therapies. RSS children (not all) can

> experience hypotonia (weak muscles), articulation problems, difficulty

> with handwriting.

> d. If shortness is impeding normal progress, make sure the child has

> access to correctly sized desks, chairs, stools, etc...

> e. Most important!: Communicate consistently and constantly with the

> parents. RSS parents tend to worry about what is happening during

> the day with their children: are they eating well? how are they

> getting along with peers? how do developmental milestones compare

> with other children? is the

> child being isolated or encouraged to particpate in group activities?

> f. If the parents need assistance with insurance companies to get

> coverage for therapies, including Growth Hormone, Speech, etc. make

> sure you can provide them with any assessments, written evaluations,

> your own caring observations, etc..

> -- In RSS-Support , " magicrss3 " wrote:

> > Katy,

> >

> > I think your idea is a good one, but I also think we have to be

> > careful when addressing educators. Remember, I am a special ed

> > teacher as well as a mom of an RSS teen, so I can see both sides of

> > the coin, so to speak.

> >

> > When we begin to make requests/demands for our RSS children, I

> think

> > we have to be very careful. It is good to make a long, detailed

> > list, but then I think we have to sort through it and pick out the

> > really important parts. It is very difficult, as an educator of

> many

> > children, to try to meet the individual needs of every single child

> > and then I begin to feel overwhelmed and even a bit

> angry/resentful.

> > It is not that I don't want to do things to help my students. It's

> > just that so many parents think that they can pose these lists and

> > expect every thing on it to be done and it just cannot all be done.

> >

> > I will give you a personal example. We are in the process of going

> > through a transition for Max from 8th grade in private school to

> 9th

> > grade in our local public high school. We met with the child study

> > team, explained about RSS, described Max's needs in general with

> RSS

> > and now his very unique needs with his dysmotility and the recent

> > PICC line and TPN. By the time we were done listing all of the

> > things we wanted, everyone just looked around the room and did not

> > know where to start. I quickly realized that what I had to do was

> > then sort through everything and prioritize. Some of what we were

> > expecting from the school and special ed teachers were more

> important

> > than others and I felt that we would have greater success if we

> > focused on the more important ones.

> >

> > I know that our children are entitled to a " free and appropriate

> > education, " one that is in the " least restricted environment, " but

> > our kids are not the only ones there and we don't stand much of a

> > chance of getting anything in a positive way, with a postive

> > attitude, if we rush in and demand the moon, sun and stars, so to

> > speak.

> >

> > I hope I am not making anyone angry by writing this, but I am

> > speaking from experience on both sides and I want to be able to

> help,

> > not create a flurry of angry responses. Our kids are definitely at

> > risk, have special needs, and need to be looked after, but there

> are

> > a lot of kids like that popping up all the time. We have to take a

> > look at what the school offers, then use that, and then tweak the

> > system to get a few more things. Gradually, we can add more, if

> > necessary and it won't seem so overwhelming.

> >

> > I hope that in my drugged haze I am not making a fool of myself and

> I

> > am making sense. I just think that so many of us parents think

> that

> > we can now go into school, demand that all of our child's

> needs/wants

> > be met and that they will be. What will happen in most cases is

> that

> > a poor relationship will develop and both sides will lose out.

> >

> > Jodi

>

>

>

>

>

>

[Guest guest]

As usual, Katy, you wrote a great reply. You have a gift of knowing

how to say things. Good job!

Jodi

[Guest guest]

Oh, Debby, I am with you on this subject!!! There are teachers in my

school who do the same thing with Max - and I am right there to see

it happening!

I'll give you one example. When Max was on the TPN, the director

made a direct statement to all the teachers that food not be used in

the classroom around Max. It was not fair to him that he was not

allowed to eat and it only made him feel worse about his situation.

Well, one teacher felt she was above all of this, I guess. She did

one lesson using apples and oranges as a way of teaching about Venn

Diagrams, and then the next week she brought in donuts for the

class! How stupid can anyone be?

Me, I am so sensitive to things that, for example, when one of my

students was bar mitzvahed and I knew that everyone in the class

except for one boy was invited (even I was invited), I would not

allow the kids to talk about it at all while they were with me. Why

talk about it and make the boy feel even worse???

But unfortunately, you and I are more senstive to things and we

respect the kids and their needs. I wish more people were that way.

Jodi

[Guest guest]

An RSS Parent's Wishlist to his/her child's

therapist/teacher/daycare/principal:

My RSS child, and I, as an RSS parent, need the following from you: (

you can also list what you DON'T WANT!)

__________________________________________

Please do not point out to my child that he is different from his

peers. He is very aware that he is not as big, but he needs to be

given the opportunity to try everything everyone else is trying

without help if he does not want it!

Also, be aware that he tires more easily than his peers and must have

more breaks, water, and snacks without it being a big deal!

Carmen & Storm (1st grade)