Re: inclusion or not... MAJOR VENT

[Guest guest]

Whoa! Are the post-partum hormones kicking in or what? ; )

And I agree with Judi's statements and her passion. The education of

children with DS has been a continuing series of increased opportunities and

expectations since parents started bringing them home from the hospital

instead of sending them away to institutions. Each generation, each partial

generation, has had more services and strategies to work with and because of

their efforts and success, the possibilities expand for the next group of

children with DS. Rick and Jan are part of it, but it doesn't stop there

and no one should want it to. Rick is and should be proud of what they were

able to do with what they had, but we are still moving forward and, yes, it

does grate that instead of encouragement for that forward movement--even if

another parent's experience makes them uncertain or even doubtful--we hear

so much resignation to stepping back. Let's face it, there have been

relatively few adequate, let alone good, inclusive educational opportunities

for kids with DS. Until there are, we can't and shouldn't say it won't work

and produce the desired outcomes.

As far as inclusion being a means to make " life long friends, " I think

that's an unrealistic expectation. Not because some people don't have

life-long friends, but because many don't and don't see any problem with it.

You grow up, you move around, you make new friends. Inclusion should more

be considered useful in learning the life long skill of making friends where

you find yourself--geographically and experientially, not based on having a

developmental delay--than on making life long friends and just saying good

enough.

I think our children should have opportunities to get to know a variety of

people because the fact that they have a label that is the same as another

child's in no way means the two will become friends. I've had Jess in

situations where she can be with children with and without d/A's--she

strikes up friendships based on interests and--well, whatever it is that

draws people together. Sometimes she isn't drawn to anyone in groups of

nda, sometimes not in groups of children with d/a--just like my other kids

don't necessarily strike up a friendship just because another child is the

same race, religion, grade level, birth state, school. Sometimes she makes

friends with kids who don't immediately seem to have anything in common with

her--but turn out to anyway.

Gosh, I'm working myself up here too!

The point is, just because we do things differently doesn't mean we aren't

doing things right--for here and now and the kids we have. Have some

tolerance and have some faith. And a little encouragement wouldn't hurt

none either.

Other Judi

inclusion or not... MAJOR VENT

Jordan is new to the school system. Fully inclusioned this year, Monday,

as a matter of fact she started her first official day as a fully

inclusioned Transitioning First Grader. And you know, I find all this very

disheartening. On one hand people are saying how important it is to treat

our kids like everyone else's kids, then you hear on here the negativity

about our children - from our own list members!

Don't tell parents to push for this or that if you are then going to say, oh

well, " they are slower anyway so I guess it really doesn't matter because

they will always be. " You put your own kids down when you say that. YOU

create the stereotype that the majority of us are fighting so damn hard to

erase. And that's just not right. You are sending negative messages to the

rest of us who, yes in 5 or 10 years down the road may have a better

educational system in place for our kids. Just because things were

different 30 years ago than they are now, does not give any parent the right

to give someone else the idea that their child won't be able to handle full

inclusion or that it's not the right program for them because they are

'retarded'. Things are constantly changing. For the better. Education 5

or 10 years from now will be different. We have to accept that children who

were taught more than 10 years ago did not have the services that today's

children now have. Is it fair? No.. but we've made progress towards the

futures of our children. Today's kids with disabilities are better off now

than they were back then. But it's because of the " then " generation that we

have what we have TODAY. Because people saw a need for something better for

their kids. Our kids today are shaping how our kids of tomorrow will get

services and education. So lets not put down inclusion simply because " back

then " it wasn't as instrumental as it is now. You send the wrong message

when you do that.

You know, I worked so damn hard to get my child the supports and services

she needed to GET full inclusion in the first place. It makes me want to cry

when I hear all the negative things coming out of the mouths of people on

this very list who have seen the battles that most of us fight to get our

kids what they RIGHTFULLY deserve. What right does anyone have to say that

because my child has MR she doesn't need to be fully inclusioned? No one

knows my child but me and I have NEVER placed any ceilings over her head or

told her that she could not do something. She's independently operated a vcr

since the age of 2. She has her own computer... yes, she turns it on and

off, she knows the right way to put a cd in the cd tray, she manipulates the

mouse just like I taught her. She can make popcorn in the microwave,

pushing all the CORRECT buttons in the CORRECT order. She clears her plate

in the trash and puts it in the sink after dinner. She helps with the

laundry. She can feed Savannah and hold her. She knows how to bathe

herself - all but washing her hair. ALL THIS AND SHE'S ONLY SEVEN YEARS

OLD. Further more, I don't know of a single 'typical' seven year old that

can sign over 200 words.

You never know, in 50 years we just may have our first president with DS.

Maybe, maybe not. But it's not up to us to dash anyone else's dreams of a

better life for their child. I don't appreciate anyone giving me

information that causes me to second guess my decision on whether or not I

did the right thing. It's negative thinking like that, that causes setbacks

for our kids in the first place. If we keep telling ourselves that our kids

don't need to be inclusioned, then that's how the rest of the world will

perceive things. Those of you who oppose inclusion make it extremely

difficult for those of us who do feel inclusion is right for our kids

because we have to fight the battle that much harder.

Down syndrome or not, kids are kids first. If people weren't so busy

focusing on the wrong perception of the stereotype, and showed others that

it didn't matter, then maybe the educators and the law makers and the

doctors would take that lesson to heart and follow that example. And maybe

inclusion wouldn't be that big of a deal. It would be the norm, and isn't

that how we want our kids to be seen and treated anyway? In the norm? I

know if my kid was treated just like any other typical child, then I

wouldn't be having this VENT session because my kid would be in with

everyone else's kid and treated the same damn way already.

And as far as getting excepted by their peers in school... well again...

that just goes back to the damn stereotyping perception. If adults didn't

spend so much time focusing on what the differences are in our kids, maybe

our kids' peers wouldn't either. Children learn from the adults around

them. Change your perception, you change the stereotype. You won't

eliminate it, but you'll change it. I don't treat Jordan any differently

than I would my friends kids. If she's bad, she's punished. If she's good,

she's rewarded. If she doesn't eat her dinner... guess what.. she gets it

for breakfast the next day. I would do that with ANY of my kids....

diagnosed with something or not. Down syndrome doesn't make her. So she

has ONE extra lousy chromosome. Big friggin deal. It doesn't dictate the

kind of person she's going to be in life. Her environment and how she's

raised will do that. Hell, I was severely picked on in school to the point

that I wanted to off myself. I don't have a disability. I'm a typical

adult. Kids are cruel. To anyone that they have been taught is LESS than

they are. And who taught them that? Adults did by teaching them that

anyone who is not just like them, is different and that being different is

bad. How did they teach them? By staring, by comments, by being

judgmental in front of their kids. The kids picked up on that and learned

that it's okay for mom and dad to treat others differently. And that's

where it starts.

I am so getting off my soap box now because after this... I need a

cigarette.

Judi - Proud mother to Jordan 7, ds and Savannah 10 weeks, nda

Where ever you go....

There you are

[Guest guest]

Isn't it wonderful to see the progress so many children with DS are making?

Isn't it wonderful to see the opportunities today's kids have? I see so many

kids pushing the limits that were once placed on kids with DS, so many kids

so ahead of where my child was at their age and it just makes me glow with

pride for them!! You won't hear me telling parents of younger children to

stop trying to help their children achieve ..... go, go, go, push, push,

push!! Help those kids be all they can be!! ;-)

Don't listen to anyone that tells you otherwise!! ;-)

Does that mean it is happening everywhere ... at the same pace, with the same

level of support ?? No, we know that! Does it mean we are finished in our

search for FAPE? No!! We have to protect our children's rights. We have to

show the educators how to work with our children. We have to change the

attitudes that have such negative expectations for people with DS. We have

to make them accept our kids as learners and valued community members.

What amazes me is what the critics of inclusion keep saying it doesn't do.

They continue to labor under misunderstandings about the purpose of

inclusion. Whether they don't understand or just choose to ignore what

people here say doesn't matter any more. Listen to the people who have

experienced success. Listen to the ones who haven't. Forget the ones who

never tried. Learn from the ones who are " walking the walk and talking the

talk. " You are allowed to choose what your child needs. Make that choice

based on what you know is best for your child, not on what others tell you

they did or what you should do. Read the examples of what has worked and what

has not and keep that in mind when you formulate your child's IEP.

We are here to be a resource for each other, not to discourage one another.

Cheryl in VA

[Guest guest]

I moved around a lot as a child and was very lonely, I had very few friends.

When I left school I lost contact with all but one friend who lives 250

miles away from me now so we write occasionally. I have recently 'found'

two old school mates and its good to catch up but we're not close friends

any more. My 'best' friends are ones I made since nursing school and

getting married having my own family. I do worry about tims lack of play

mates, he has loads of friends at school but few who have called for him

themselves. But it doesn't really bother him, apart from one friend who

lives down the road and he mithers on at me to go visit about 50 times a

day! There was a study done here a few years ago about friendships in teens

with ds which found much as many of us have that our kids have friends at

school, many of whom are more in a caring role than an equal role, and that

many parents are bothered by this. But the teens themselves were not unduly

bothered, this covered special and mainstream school. I'll have to try and

dig the article out, I forget where I put it.

sue wong

>

> As far as inclusion being a means to make " life long friends, " I think

> that's an unrealistic expectation. Not because some people don't have

> life-long friends, but because many don't and don't see any problem with

it.

> You grow up, you move around, you make new friends. Inclusion should more

> be considered useful in learning the life long skill of making friends

where

> you find yourself--geographically and experientially, not based on having

a

> developmental delay--than on making life long friends and just saying good

> enough.

[Guest guest]

YEAH LOL! They sure are!

Judi2 - Proud mother to Jordan 7, ds and Savannah 10 weeks, nda

Where ever you go....

There you are

RE: inclusion or not... MAJOR VENT

Whoa! Are the post-partum hormones kicking in or what? ; )

[Guest guest]

I think Rick has unwittingly opened a can of worms here.

One thing I think we all need to remember is that our kids are

handicapped. We all want full inclusion, but if you think logically it

will probably never happen. Now before you vent at me, BJ is fully

included in both his school settings. But he needs an aide. We all rely

on assistance , be it government, or private health or self funded, but

we all rely on aides. Now am I am all for BJ going to school with his

peers. He loves it. The kids he goes to school with also love him. But

BJ is only 5. Natasha is 11 months old and is chatting like BJ. OUr kids

are delayed. Yes they need help. Yes we need to push to get our kids

some services. But I sometimes wonder how hard should I push, when BJ

behavioral probs push people away. Now I realize that everyone kid is

different. And everyone's behaviors are probably worse than BJ's. But

right here and now at age 5 I can see the advantage of both a special

school and a normal school. Everyone gets teased at school, but if you

listen to the parents with older kids, our 15 yr. old kids cant relate

to kids their own age,. Yes it is hard. BUt I think we also need to

smell the coffee. We know our kids because we live with them. Doesn't

mean we have to shove everyone else nose in it constantly. If we want

and need them to succeed, then yes we need to push, but we need to see

what the KID can handle. It shouldn't be about what WE want as parents-

it should be about what your CHILD wants.

I will be watching BJ and seeing what he can handle before we make

decisions about schooling. I will put his name down in both places.

It is also hard for us parents who have had our DS child first. This is

normal to us. Natasha is freaking me out because BJ was slow at

everything. I think you tend to grade all other kids by your first one.

I tend to grade them all by BJ, and then wonder why I am told " he

should be able to do this. "

Inclusion is a wonderful great thing. But it is a personal thing.

--

Leis....mum to 5 & Natasha 11 months

The time you enjoy wasting is not wasted time.

Bertrand (1872 - 1970)

[Guest guest]

I agree too. Inclusion should certainly be given a chance.

was included before anyone heard of inclusion. He went to preschool with

regular kids and did all the same things, then went to a private school where

it was the same way. He didn't make lifelong friends but that isn't what he

went to school for. He had friends there. But they were scattered all over

the urban area so it was hard to keep in touch. His first teacher didn't

know that he wasn't supposed to be able to learn to read so she taught him,

and everything went on from there. He studied history and science and other

things with no modifications. No one was graded and classes were small so

there was no top or bottom of the class. It was ideal for him. Other kids

with DS and other problems followed him. And we didn't have to constantly

fight to get him in. He did not have OT, PT, etc, did have some speech

therapy. But he had those things outside of school.

I think every child should have at least a chance at inclusion. There

are probably circumstances, where services are good, that special services

are better but let's give inclusion a chance first.

Jessie

[Guest guest]

You go Jessie, or rather, went in 's case. And to do that 30

something years ago, to me, is quite remarkable.

Guys, listen the choices that Jessie might have had for are way less

than whats out there for our kids today.

People like Jessie and Rick are our pioneers and we need to look to them as

our mentors. here is the perfect example of one way working for one of our

kids and another working in a different way - and all that give or take 30

years ago!!!!

~ Mom to 12 DS and Diabetes Type 1 and 8 NY

[Guest guest]

Thank you, Sue

When one has had to fight hard to place their child in an inclusive

setting, it's probably very hard to hear that it might not be best.

However, that is just what has happened to more than one of us.

Danny has had plenty of opportunities to shine in inclusion. He has

always made it clear that he is not comfortable there. His father, his

teacher, and I all agree that he has been astute enough to know that he

can't operate at the same level as the other kids, so he withdraws rather

than embarass himself.

We're having the opposite problem of the battle for inclusion. We'd love

for him to be in APE; he has always participated well in that setting. But

the school system says he doesn't " qualify " for APE, so he must go to

regular PE, where he rarely does anything but sit on the floor.

Please stop the name calling. Those of us who have had to choose a more

restrictive setting for our children have already experienced some

disappointment and heartbreak over it. We don't need to have it insinuated

that we are less than ideal parents because of it.

Bev

-----Original Message-----

From: Sue Wong [mailto:crowndale@...]

The point here is that inclusion is a right

but it doesn't have to be (or shouldn't have to be) every parents choice.

Many on this list have children in more restrictive settings becoz they know

their child and that suits their child.

[Guest guest]

This is sooo true Judi. Inclusion without proper supports is just simply

dumping and it, of course never works. " Educators " have used this many times as

an excuse not to include. " Educating " is an example of dumping and I felt

so sorry for , the other children and especially that underpaid, overworked

teacher.

Elaine

Re: inclusion or not... MAJOR VENT

I am a big advocate of inclusion for all children with special needs, but I

am also a big advocate of parental choice.

[Guest guest]

First of all, if this is directed at me, then read my post in it's entirety.

I'm not the one doing the name calling.

By the way, My child was DENIED her LRE FIRST. She was placed, not in a more

restrictive environment, but in the MOST restrictive environment without FIRST

having the chance to explore what her LEAST restrictive environment was. And as

for me... this single parent has had to fight to get her child the LRE that she

deserved in the first place. I think I know how hard I fought to get her there.

Furthermore, I never said that ANYONE was a " less than ideal parent " because

their child was not in a LRE. Those were not my words nor was it ever an

accusation that I had made. Again, my original post NEEDS to be read to get the

point.

You did what was right for your child. I never stated that you or anyone else

was wrong for doing so.

It's funny how my words seem to get so twisted.

Judi - Proud mother to Jordan 7, ds and Savannah 10 weeks, nda

Where ever you go....

There you are

RE: inclusion or not... MAJOR VENT

Thank you, Sue

When one has had to fight hard to place their child in an inclusive

setting, it's probably very hard to hear that it might not be best.

However, that is just what has happened to more than one of us.

Danny has had plenty of opportunities to shine in inclusion. He has

always made it clear that he is not comfortable there. His father, his

teacher, and I all agree that he has been astute enough to know that he

can't operate at the same level as the other kids, so he withdraws rather

than embarass himself.

We're having the opposite problem of the battle for inclusion. We'd love

for him to be in APE; he has always participated well in that setting. But

the school system says he doesn't " qualify " for APE, so he must go to

regular PE, where he rarely does anything but sit on the floor.

Please stop the name calling. Those of us who have had to choose a more

restrictive setting for our children have already experienced some

disappointment and heartbreak over it. We don't need to have it insinuated

that we are less than ideal parents because of it.

Bev

[Guest guest]

In a message dated 1/15/2003 11:46:19 PM Eastern Standard Time,

JB66111@... writes:

>

> I think every child should have at least a chance at inclusion. There

> are probably circumstances, where services are good, that special services

> are better but let's give inclusion a chance first.

>

Many parents do not understand that it is the right of every child to start

with the LRE. And every IEP team should consider that as the first choice

for each child. It does not mean the child has to perform academically at

grade level, it does not mean the child has to " fit " into that model. The

only requirement is that the child make " progress " on their IEP goals. If

that environment will not give the child that progress, you move down the

line to the next LRE and consider it. Regardless of whatever programs are in

place already, regardless of what the school has done in the past.

And the most important thing parents should remember, every child is

guaranteed a right to access the regular curriculum. So, even in self

contained classes, children have the right to learn math, science, social

studies, language arts, pe and health, everything the regular ed children

have access to, modified if necessary, but part of their academics. Self

contained classes do not have to be functional only curriculum, teacher

dictated curriculum, same worksheets year after year, or quilts!

Wherever your child goes for their education, make it a meaningful

education!!!

Cheryl in VA

[Guest guest]

I have never heard anyone in this group say that inclusion is not good for

all kids with ds. I have heard, and said myself, that full inclusion is not

the right setting for some of our kids. I, too, have fought long and hard in

TN for inclusion for all kids, then only to realize that my kid was one of

the ones that could not handle it. A lot of kids with ds can handle, and

indeed thrive in a full inclusion setting. But there are a lot of kids with

ds out there that just can't handle it. It creates a setting of to much

stimulation and chaos, thereby not allowing the child to be able to sort out

what is coming into the brain and learn from it.

Inclusion is wonderful. ALL kids should be fully included in all schools.

But full inclusion just isn't for everyone. That doesn't mean it isn't right

for your child. That doesn't mean that you shouldn't keep on fighting for

what you know is right.

My child with ds is 11 years old now. I have fought a good fight for the

last 11 years. I have taken our school to due process one time, and

threatened to do it several other times. The director of special ed knows

where I stand, and I know where she stands. I know the laws, and she knows

that, too. She knows that I am not afraid to take it to the extent of the

law. Heck, I even sat outside the door of the superintendent of schools one

day, until he came out and talked to me about a situation. (I had not been

able to get him on the phone for 2 weeks) DON'T EVER STOP FIGHTING FOR WHAT

YOU KNOW IS NEEDED FOR YOUR CHILD! You CAN change the world!

But keep in mind-those of us who's kids are a little older than yours-we have

been where you have been. We still have the same dreams for our kids that

you have for Jordan. We have researched and found out the facts. We have

done the home teaching. We have had endless IEP meetings. We have been

through the mediation and due process meetings. We have had a few more years

than you to try out different methods of teaching our kids. And we have

found what is right for THEM. And we have gone with that and insisted on

getting the best teaching and services we can for them within that realm. We

have not given up. We have not sold out to the powers that be. Even though

we may feel like we have sometimes. We have made an educated decision for

someone that can't make that decision for themselves yet. And we will

continue to do whatever we can to help our kids with ds to get the education

they need to get along in this world to the best of THEIR ability. Whatever

that may be. And it is different with each child. Just as our nda kids are

each different, so our ds kids are all different. With different levels of

learning that they are able to accomplish. With different levels of

socialization that they are able to accomplish. I think Jasmine will make a

fine Wall Mart greeter. But she may choose to do something else. llThat will

be her choice. No one will ever put a ceiling on what she can learn or do or

become, and quite frankly, I resent you saying that any of us would even

think about doing that!

Toni-Mom to Jasmine-11-ds-and doing very well with her education in TN, thank

you!

[Guest guest]

What I find disheartening is that people say things that seem to indicate

parents making inclusion choices are in " denial " or don't understand their

child's ability (or disability). They try to infer that students in certain

environments are sure to suffer self esteem problems when they don't even

know the child. Or that parents are " doing inclusion " for some self serving

reason, such as " erasing " their differences from their non-disabled peers. I

find statements like that just plain absurd, even insulting. Many people have

different definitions of inclusion and that in itself creates some of the

opinion differences we see on this list.

It has taken quite a long time and quite a few discussion on this list and

others to bring some people to the point where they even acknowledge that

classes and environments are different building to building. That the

programs and staff in one state are not matched in another. That they

academics their child participated are not available for other children.

That opportunities and choice is what is important for all parents.

None of us need to justify our educational decisions to anyone other than our

child. It is quite evident to those of us that have been posting for a long

time who feels the most passionate about what topic. And that passion comes

out when the right buttons are pushed. Many of us know who is going to push

the buttons and can even predict how they will do it ... it's usually a

repeat. The good news I see is that SLOWLY, slowly, the comments have

changed somewhat, the other perspective is acknowledged more than it was in

the past. I have great hope that we will come to the point where we can all

say, " Hey, I'm happy to hear your child is doing well in the environment you

chose for them. Good for them! Let me tell you about my child's success in

where they are in school. "

Cheryl in VA

[Guest guest]

In a message dated 1/20/2003 3:22:43 PM Eastern Standard Time,

info@... writes:

> that once my child is 22, 32, 42....62 and we are

> at the mercy of our community to value us for there to be support

> for those who need it, I hope I can be gracious, yet vigorous in my

> creativity to support him. There's no law to back families of kids

> who are older...but there's sure a lot of learning opportunities

> available in the 40+ years after IDEA ends.

>

Mercy is right! We battle for community support for adults with

disabilities every day at my work! We have helped young adults with

disabilities leave nursing homes to live in different settings (dare I say

better settings?) in our efforts to help them with inclusion into the

community. While very rewarding, it is very depressing too. Many young

adults do not have family support. The challenges of being on " their own "

are sometimes very overwhelming for them. Finding the right people to support

them is difficult. And many of them are lonely. No family, few friends, no

jobs, no social activities, these adults do not have the ideal life. They

can be taken advantage of in many ways. They have staff that do not show up

for work or who show up late, who eat their food, who steal from them.

Sometimes the obstacles are huge for these young adults. Laws and monies to

support them are few and far between.

Most of our community has no idea what is going on in the lives of these

adults.

Cheryl in VA

[Guest guest]

In a message dated 1/20/03 11:07:58 AM Central Standard Time,

wildwards@... writes:

> What I find disheartening is that people say things that seem to indicate

> parents making inclusion choices are in " denial " or don't understand their

> child's ability (or disability). They try to infer that students in

> certain

> environments are sure to suffer self esteem problems when they don't even

> know the child. Or that parents are " doing inclusion " for some self serving

>

> reason, such as " erasing " their differences from their non-disabled peers.

> I

> find statements like that just plain absurd, even insulting. Many people

> have

> different definitions of inclusion and that in itself creates some of the

> opinion differences we see on this list.

>

You've seen this here?

What I've seen is parents who've had to deal with something different then

what they had first dreamt of. I've seen older parents who've tried to

prepare or make us really look at our childs reality and see how it's

changing as they grow older. I see a change in and her peers, some of

you don't. I don't hear that inclusion is bad, but that sometimes we as

parents will really have to look at what or how our child feels.

Personally I've never read anti inclusion in Rick's posts and yes I

understand why soem feel he's saying something like that. LOL He's never

said that inclusion isn't good, he's tried to get people to really look at

the options that are a vailable and to really look at our child. (

definatly is not the social butterfly type, hehe, she tends to withdraw, tho

this has become better over the years, but I would say the big mistake we

made was putting her in a very overstimulating classroom at age of 3, we

still deal with many self stim behaviors that began at that time, hindsight

is really something, lol) Jan sounds like an amazing woman, she accomplished

what she did because her parents chose a different path for her education

then what was the norm at that time, plus they included her in everything

they did.

Life's about choices, and we try to guide our kids without messing up to

much. LOL

I'm one of those who's had to deal with a different reality then what I'd

planned on. :-)

Joy

[Guest guest]

In a message dated 1/20/2003 5:53:33 PM Eastern Standard Time, JTesmer799

writes:

> You've seen this here?

Oh yes, in fact in this thread it is very present. Just re-read the posts if

you missed the remarks the first time.

Cheryl in VA

[Guest guest]

In a message dated 1/20/2003 4:55:41 PM Central Standard Time,

JTesmer799@... writes:

> >You've seen this here?

HI Joy playing devils advocate lol

Well some have seen it here or we wouldn't be having trouble with this

thread lol I myself play the duck and let it slide off my back .......... but

I can pick up on the way certain words are used. My sisters are great at

this, the play on words .... my Mom says " Sara's growing like a weed " sister

says " this is what Kathy claims " now I could walk away thinking hmmmmm they

don't believe me heehee but instead I think who cares lol

>

> >What I've seen is parents who've had to deal with something different

> then

> >what they had first dreamt of. I've seen older parents who've tried to

> >prepare or make us really look at our childs reality and see how it's

> >changing as they grow older.

>

On this idea, I don't think my reality is any different from what I pictured

lol Sara was sassy at 4 and she still is lol now as far as preparing me for

life with Sara, no one could predict her medical issues and no one can tell

me her future because of them a few here though can understand seizure

disorder and the worst scenarios .... Waiting for the other shoe to fall.

In my posts all I want to do is celebrate what has worked for you all and

share what has worked for us OK maybe not in that order lol

Kathy mom to Sara 11 ........... we have to be careful discussing reality, I

haven't seen any signs that indicate someone needs a reality check heehee

well except for Tim and his allegedly cute buttocks

[Guest guest]

In a message dated 1/20/2003 7:39:27 PM Eastern Standard Time,

lowenthalrj@... writes:

> The posters may or may not have intended to put it in, but it was

> there and it's very discouraging for those who already have to struggle

> with

> the negativity in other areas.

>

I have no doubts it was intended. It's not the first time those type of

comments have been made. That's what leads to the type of discussions we

have now and have had in the past.

I'm still trying to see the postive support for parents in the following

comment (part of a sentence) from a post in this thread:

" whose kids aren't the >high flyers without problems that some claim to

have. "

Do we have to support our " claims " here?

Cheryl in VA

[Guest guest]

In a message dated 1/20/03 6:56:21 PM Central Standard Time,

b4alltoday@... writes:

>

> HI Joy playing devils advocate lol

Oh shame on you. LOL

>

> Well some have seen it here or we wouldn't be having trouble with this

> thread lol I myself play the duck and let it slide off my back ..........

> but

> I can pick up on the way certain words are used. My sisters are great at

> this, the play on words .... my Mom says " Sara's growing like a weed "

> sister

> says " this is what Kathy claims " now I could walk away thinking hmmmmm they

>

> don't believe me heehee but instead I think who cares lol

>

>

But many are still sensitive about having to have made a more restictive

choice based on the needs of their child, it's very easy to read things

between the lines in some 'pro inclusion' posts, I can see that. I've been

able to be the duck for a quite some time now. LOL

But I have to admit from my reading I've seen some strongly worded statements

against those who discuss their more restictive choices (even those who had

no real inclusion choice at the time thier child was in school), But I'm

reading from more of that point of view, having made that choice. :-)

Nothing like keeping the discussion lively. LOL So sorry that people are

getting flamed tho....sometimes need to go back and try to restate what you

really meant.

> >

> > >What I've seen is parents who've had to deal with something different

> >then

> > >what they had first dreamt of. I've seen older parents who've tried to

>

> > >prepare or make us really look at our childs reality and see how it's

> > >changing as they grow older.

> >

>

> On this idea, I don't think my reality is any different from what I

> pictured

> lol Sara was sassy at 4 and she still is lol now as far as preparing me for

>

> life with Sara, no one could predict her medical issues and no one can tell

>

> me her future because of them a few here though can understand seizure

> disorder and the worst scenarios .... Waiting for the other shoe to fall.

>

Ahhh, but Kathy, MY reality of my child IS differnt from what I envisioned

when she was smaller. Does this make it a bad reality? no of course not, but

it is going to Holland all over again. (after all as I said to the mom who

came to talk to me in the hospital, that laying there I kept asking myself

why my baby? then kept telling myself the answer...why not your's your a

human to aren't you? why should it be someone elses baby? LOL she said it

took her a year to get to that point, hehe) I cannot make make into

something she's not, no matter how much I'd like her to be what I concider

more 'normal'. She's doing great in her restricted setting. :-) BTW, no

one can predict any individual's medical issues, in some areas you do deal

with higher risks now. (while I deal with bad behaviors that I find out

were caused by constipation of all things, sigh)

> In my posts all I want to do is celebrate what has worked for you all and

> share what has worked for us OK maybe not in that order lol

>

> Kathy mom to Sara 11 ........... we have to be careful discussing reality,

> I

> haven't seen any signs that indicate someone needs a reality check heehee

> well except for Tim and his allegedly cute buttocks

>

>

>

The reality that needs to be checked is if we are really listening to the

kid, sometimes in our push for what we want we don't listen (yeah I can be

guilty). LOL And the check is to remember that they're all individuals

which seems to be left out sometimes in some posts.

Reality has a way of intruding sometimes. LOL (yes Kathy I have needed

reality checks at times, hehe)

Joy .........who always discusses her reality. hehe. Who also needs to get

done with her English assignment....what was she thinking when she signed up

for a college English class?

now about Tim's buns.........I've never met him, so are they cute? LOL

[Guest guest]

This is so scary to think about. Makes me wonder what's in store for Jordan.

When I look at her sweet innocent face I think to myself, why would anyone want

to take advantage of these kids? Maybe we can lobby for better accountability

on the law books when it comes to abusing adults with disabilities. I don't

and wouldn't know where to start since Jordan is only 7, but I'm willing to help

ensure that if someone chooses to work with our children, that they be held to

the highest of standards when it comes to caring for them. Maybe if we hold

those people accountable, then the School Districts will take that and learn

from it. I find it sad that there's going to be no accountability when it comes

to Jordan's old school district and what they did to her. and now I'm so

totally off topic.... it's been that kind of day.

Judi - Proud mother to Jordan 7, ds and Savannah 10 weeks, nda

Where ever you go....

There you are

Re: Re: inclusion or not... MAJOR VENT

They

can be taken advantage of in many ways. They have staff that do not show up

for work or who show up late, who eat their food, who steal from them.

Sometimes the obstacles are huge for these young adults. Laws and monies to

support them are few and far between.

Most of our community has no idea what is going on in the lives of these

adults.

Cheryl in VA

[Guest guest]

In a message dated 1/20/03 8:50:18 PM Central Standard Time,

info@... writes:

> He's a complicated kid. But HE holds the answers to what is right.

> Not me.

>

> Respectfully,

> Joan

>

>

Truthfully with her communication problems is pretty complicated to.

LOL

And many times the lists have been a lifesaver since they've helped me to

look from a different angle at the problem, helped me to see what I was

missing. :-)

I'll have you know that Iwas even on the right track with the awful behavior

for the last two months of the year, I'd written 'the letter' requestig they

collect data on the incidents of extreme resistance on her part, with

possibly doing a behavior assessment, since her attitude about going to

school in the mornings was she really wanted to go, so it wasn't school

itself.

Turns out that going through her notebook, even they had written enough (data

is data) to figure it out, but it was spaced to far apart to really 'see'.

Did she have a stomach ache? was one of the questions I asked them to include

in their data collection UGH. poor kid. :-( blind mom. But now a well

prepared for IEP meeting mom, copies of notes made to show the importance of

collecting data. :-) Let me tell you she's a differnt child since she's no

longer constipated. Tho I really have been watching her.

Now since I've written my little english paper I really need to write my

little speech for the IEP meeting. Since we are evidently going to write the

IEPand discuss the 'appropriateness' of the placement I needs to be prepared.

i have to go in quest of that form to organize my requests. Communitcation

will be a biggie so they can't try to find a different setting. This meeting

has come about all because I wrote a request for collection of data. sheese.

how can I help them as they want me to if I can't get a good idea of what

might be going on????????????? ackkkkkkk......

joy.....who must really be frustrated since she's been talkign on the list so

much lately. hehe. :-)

[Guest guest]

Agreed. The posters may or may not have intended to put it in, but it was

there and it's very discouraging for those who already have to struggle with

the negativity in other areas.

Other Judi (who thought about leaving the list, but couldn't remember the

password to let her manage her account, darn it! I'll never be able to

get off!)

Re: inclusion or not... MAJOR VENT

In a message dated 1/20/2003 5:53:33 PM Eastern Standard Time, JTesmer799

writes:

> You've seen this here?

Oh yes, in fact in this thread it is very present. Just re-read the posts

if

you missed the remarks the first time.

Cheryl in VA

[Guest guest]

The reality that needs to be checked is if we are really listening

to the

kid, sometimes in our push for what we want we don't listen

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

My reality is very different from what I was expecting, and I often

meet with some judgemental folks until I let them know all the

things my son faces each day.

In short, his success comes when *I* advocate for what *he* is

telling me. School folks still think it's about me...no matter how

much I tell them it's about seeing the world through *Andy's* eyes.

And that world has a very well-planned " inclusive " period of the

day...and another good portion of the day that allows him to learn

to use his communication systems and meet his sensory needs without

being overwhelmed by axiety and panic due to fear and sensory

overload.

He's a complicated kid. But HE holds the answers to what is right.

Not me.

Respectfully,

Joan

[Guest guest]

In a message dated 1/20/2003 9:55:59 PM Eastern Standard Time,

JTesmer799@... writes:

> But many are still sensitive about having to have made a more restictive

> choice based on the needs of their child, it's very easy to read things

> between the lines in some 'pro inclusion' posts, I can see that.

I think it's easy to read between the lines of any post if that is what

people want to do. Inclusion is not even a word used in any of the laws

regarding education ..... LRE is. I am PRO CHOICE ...... PRO OPPORTUNITY

..... PRO CURRICULUM.

I think every parent should have every option explained and offered to them

before a placement choice is made .... offered with all the supports the

student would need.

Whatever choice a parent makes for their child is up to them .... but I do

not want to hear that I should do what someone else has done any more than

they would want me to tell them they should do what we have done. I have

shared that my daughter has not had the supports she needed and still done ok

in spite of that ....we were lucky there, and someone else may not have been

able to do that.

I would not want any parent to choose a LRE without checking it out. I would

not want any parent to choose a functional curriculum if that is not what

they wanted. I try to help parents understand what the law tells the school

system they should do vs what the school system tell parents they have

available ... in many cases there is a BIG difference.

I don't think anyone on this list can give me a better picture of my

daughter's reality than we have from living it .... sorry that sounds like

the school personnel telling me about DS and why she needs to be in a certain

LRE they have in mind!

Cheryl in VA

[Guest guest]

I agree with this. Unfortunately, Jordan's LRE rights were not fully given to

me back in August of '01 when she started elementary education. It was totally

skipped over and ignored. I guess the SD figured that if they didn't give me

those LRE options, that I wouldn't hear or find out about them. I'm glad I did

find out, but still, it should have been the SD's obligation to inform me about

her LRE first. Then discuss placement in a more restrictive environment. IF

this had happened, Jordan would have NEVER been in Life Skills to begin with.

Not to say that she wouldn't have been in another type of placement, but I

should have at least had the opportunity to know about it first.

Judi - Proud mother to Jordan 7, ds and Savannah 10 weeks, nda

Where ever you go....

There you are

Re: inclusion or not... MAJOR VENT

I think every parent should have every option explained and offered to them

before a placement choice is made .... offered with all the supports the

student would need.

Whatever choice a parent makes for their child is up to them