New to Group

January 19, 2006

Hi Bonnie,

Welcome to the group! I just wanted to second everything Carol has

already told you. Keep us posted.

>

> Hi. I am new to the group. My son, Wesley, is 6 months old and

he just

> got the Starband on 1/3/06. We have had to make several return

visits for

> adjustments. I feel so stupid. I did not realize there was this

support group.

> I wish I had found this before he got his Starband. I didn't

realize there

> were so many different kinds of devises.

>

> Has anyone been to Valentine & Co. in Richmond, Virginia?. I

did not

> see them listed on the list. I was told they are the only ones in

Richmond

> that do this. I am really surprised since this is such a big city.

We even

> have Medical College of Virginia that is very well known.

>

> Also, my health insurance (Southern Health) had denied the claim

saying that

> it is just cosmetic. The tips on the website for filing an appeal

were very

> helpful. It is going to be $1,500, and I had to pay $750 upfront

when they

> did the cast. I have my fingers crossed it will be appealed.

>

> Thanks so much ---- Bonnie

>

January 19, 2006

Hi Bonnie,

Welcome to the group! I just wanted to second everything Carol has

already told you. Keep us posted.

>

> Hi. I am new to the group. My son, Wesley, is 6 months old and

he just

> got the Starband on 1/3/06. We have had to make several return

visits for

> adjustments. I feel so stupid. I did not realize there was this

support group.

> I wish I had found this before he got his Starband. I didn't

realize there

> were so many different kinds of devises.

>

> Has anyone been to Valentine & Co. in Richmond, Virginia?. I

did not

> see them listed on the list. I was told they are the only ones in

Richmond

> that do this. I am really surprised since this is such a big city.

We even

> have Medical College of Virginia that is very well known.

>

> Also, my health insurance (Southern Health) had denied the claim

saying that

> it is just cosmetic. The tips on the website for filing an appeal

were very

> helpful. It is going to be $1,500, and I had to pay $750 upfront

when they

> did the cast. I have my fingers crossed it will be appealed.

>

> Thanks so much ---- Bonnie

>

January 19, 2006

Hi Bonnie,

Welcome to the group. I used to live in Richmond about 10 years

ago Anyway it's not uncommon for there to be only one option in

town - even bigger towns.

Kiersten, 8 months, DOC Band 1/10/06, Tort

na, 2 1/2 yrs, DOC Grad Feb 04, Tort Resolved

www.thefilyaws.com

>

> Hi. I am new to the group. My son, Wesley, is 6 months old and

he just

> got the Starband on 1/3/06. We have had to make several return

visits for

> adjustments. I feel so stupid. I did not realize there was this

support group.

> I wish I had found this before he got his Starband. I didn't

realize there

> were so many different kinds of devises.

>

> Has anyone been to Valentine & Co. in Richmond, Virginia?. I

did not

> see them listed on the list. I was told they are the only ones in

Richmond

> that do this. I am really surprised since this is such a big

city. We even

> have Medical College of Virginia that is very well known.

>

> Also, my health insurance (Southern Health) had denied the claim

saying that

> it is just cosmetic. The tips on the website for filing an appeal

were very

> helpful. It is going to be $1,500, and I had to pay $750 upfront

when they

> did the cast. I have my fingers crossed it will be appealed.

>

> Thanks so much ---- Bonnie

>

January 19, 2006

Hi Bonnie,

Welcome to the group. I used to live in Richmond about 10 years

ago Anyway it's not uncommon for there to be only one option in

town - even bigger towns.

Kiersten, 8 months, DOC Band 1/10/06, Tort

na, 2 1/2 yrs, DOC Grad Feb 04, Tort Resolved

www.thefilyaws.com

>

> Hi. I am new to the group. My son, Wesley, is 6 months old and

he just

> got the Starband on 1/3/06. We have had to make several return

visits for

> adjustments. I feel so stupid. I did not realize there was this

support group.

> I wish I had found this before he got his Starband. I didn't

realize there

> were so many different kinds of devises.

>

> Has anyone been to Valentine & Co. in Richmond, Virginia?. I

did not

> see them listed on the list. I was told they are the only ones in

Richmond

> that do this. I am really surprised since this is such a big

city. We even

> have Medical College of Virginia that is very well known.

>

> Also, my health insurance (Southern Health) had denied the claim

saying that

> it is just cosmetic. The tips on the website for filing an appeal

were very

> helpful. It is going to be $1,500, and I had to pay $750 upfront

when they

> did the cast. I have my fingers crossed it will be appealed.

>

> Thanks so much ---- Bonnie

>

January 21, 2006

Welcome to the group! It's great to hear that Enbrel is working so well for

you. Are you still taking MTX?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New to group

> Hello all,

> I have just found this group and registered.

> I am 62 and was diagnosed with RA, 2 yrs ago.

> My doctor put me on Methotrexate and Etodolac.

> I was in remission for about 6 months, then the flares came back

> in full force. I was having debilitating flares about every 2 wks.

> My doctor put me on Enbrel, and I haven't had a flare for about

> 2 1/2 months. I still suffer from some fatigue, but I am able to

> work and have my life back. I am grateful to find this website

> because there do not seem to be any support groups for RA in my city.

> It is good to have contact with others who understand.

>

> Thank you for being there.

January 21, 2006

-Thank you for the welcome. Yes I do take MTX with

Enbrel. Doctor has reduced the amount of MTX a bit,

and may reduce even more at some point.

Dianne

-- In , " "

<Matsumura_Clan@m...> wrote:

>

> Welcome to the group! It's great to hear that Enbrel is working so

well for

> you. Are you still taking MTX?

>

> Not an MD

>

> I'll tell you where to go!

>

> Mayo Clinic in Rochester

> http://www.mayoclinic.org/rochester

>

> s Hopkins Medicine

> http://www.hopkinsmedicine.org

>

> [ ] New to group

>

> > Hello all,

> > I have just found this group and registered.

> > I am 62 and was diagnosed with RA, 2 yrs ago.

> > My doctor put me on Methotrexate and Etodolac.

> > I was in remission for about 6 months, then the flares came back

> > in full force. I was having debilitating flares about every 2

wks.

> > My doctor put me on Enbrel, and I haven't had a flare for about

> > 2 1/2 months. I still suffer from some fatigue, but I am able to

> > work and have my life back. I am grateful to find this website

> > because there do not seem to be any support groups for RA in my

city.

> > It is good to have contact with others who understand.

> >

> > Thank you for being there.

>

January 25, 2006

In a message dated 1/19/2006 1:47:25 PM Eastern Standard Time,

vonita4@... writes:

Hello All, This is my first post as I'm new to the group. I have 4

boys and my 6 year old has been diagnosed with Aspergers. He's the

3rd to the last child. We've been aware of his situation since he was

3 and everyday is still a learning process for us. My son is and has

always been fascinated by movies. He started with Barney which is

harmless. At the age of 3 he knew how to operate the dvd player so

he's very independent in that area. He loves Disney movies and he

memorizes lines in the movies. He can tell you which actors play in

different movies. He's such a blessing. Now that he's 6 he still

watches disney movies but now he likes action movies and he imitates

the fighting/kicking scene. I'm thinking of enrolling him in a karate

class. Well now the problem is that he's threatening to punch

teachers and other classmates. He's enrolled in public school and he

is that only autistic child in his class. So the teachers have

notified me that his behavior is disrupting the other classmates.

He's not social so he doesn't have friends. He basically plays by

himself on the playground. I recently had a meeting with a few of his

teachers and I was very disappointed in their lack of interest in his

education. My son is in the 1st grade and can read at a 4th grade

level. One teacher told me that when he reads he doesn't understand

what he's reading. I let her know that he understands when I ask him.

I suggested that maybe they can rephrase a question when asking him

and they basically told me that it's too time consuming. I'm so

disappointed in his school system. Everyday my child comes home with

a note about disruptive behavior. When I dropped him off at school

last week I noticed there was a partition that separated him from the

rest of the class. I was never notified of this and I had no idea how

long it was there. During the meeting we had with his teachers, they

informed me that they placed it there because his behavior was

distracting the other children. On one day his eraser came off his

pencil and he had a very bad day. I felt so angry with this staff.

They can't understand how upsetting this one thing can be to my son.

I really wish I could afford to stay home and homeschool my son but I

can't financially. Every morning when I get him dressed to go to

school he tells me that he doesn't want to go and it's been happening

more frequently. It's a struggle for me as his mother. I want to

protect him from the world. I let him stay home yesterday. It's so

hard because I want him to stay home rather than go to school. Any

advice on how to handle this? We only have 1 elementary school in our

district so transferring him to another school isn't an option.

Vonita

Hi Vonita,

They need to get educated. You should go to wrightslaw.com and start

learning about the process and your rights.

First, when a child's behavior is interfering with his education or the

education of others, they need to do a " functional behavior assessment. " My

computer is in the hospital so I don't have my links handy, however you can put

that in any search engine and find out about how they work.

He needs an IEP and people need to get involved with helping him learn how

to behave appropriately and more importantly, how to make friends and be a

friend. All of these skills are vital to growing up to be independent.

Another

thing is that you will have to be the one who pushes these folks to learn

about AS and about ways of educating them. I would vigorously advocate for

them to attend local conferences, find books or video's and loan them to the

teachers (Tony Attwood has a great video on AS, for instance). I would find

out

where your sped services come from - for example here in Ohio we have

" serrc's " which are regional centers of information and education about sped

needs.

They should be helpful in providing information to you and to the school.

Also, try to find a therapist or advocate or doctor in your area who can help

you advocate and bring in information as well. Being a small school is no

excuse for not providing an appropriate education. You will just have to do a

lot of pushing to get it to happen.

Roxanna

January 25, 2006

Thanks Roxanna. I see that I have a huge road ahead of me and I know

that my son's education is most important to me and I don't feel as

if the teachers feel the same way. Everyday he's coming home with

referrals to the principal's office related to his behavior. They are

telling me things like his behavior is frightening the other

children. He " growled " in class yesterday. A 6 year old boy growling

in class is scaring the other students. I get so mad at this school.

He's the only autistic child in his classroom and his behavior

definitely stands out from the others. They make a point of telling

me this almost daily. Right now I'm considering homeschooling him.

I'm just so fed up. I have a lot of research to do and I never ever

thought that the school didn't have my son's best interest in mind,

until now.

Vonita

Re: ( ) New to group

In a message dated 1/19/2006 1:47:25 PM Eastern Standard Time,

vonita4@... writes:

Hello All, This is my first post as I'm new to the group. I have 4

boys and my 6 year old has been diagnosed with Aspergers. He's the

3rd to the last child. We've been aware of his situation since he

was

3 and everyday is still a learning process for us. My son is and has

always been fascinated by movies. He started with Barney which is

harmless. At the age of 3 he knew how to operate the dvd player so

he's very independent in that area. He loves Disney movies and he

memorizes lines in the movies. He can tell you which actors play in

different movies. He's such a blessing. Now that he's 6 he still

watches disney movies but now he likes action movies and he imitates

the fighting/kicking scene. I'm thinking of enrolling him in a

karate

class. Well now the problem is that he's threatening to punch

teachers and other classmates. He's enrolled in public school and he

is that only autistic child in his class. So the teachers have

notified me that his behavior is disrupting the other classmates.

He's not social so he doesn't have friends. He basically plays by

himself on the playground. I recently had a meeting with a few of

his

teachers and I was very disappointed in their lack of interest in

his

education. My son is in the 1st grade and can read at a 4th grade

level. One teacher told me that when he reads he doesn't understand

what he's reading. I let her know that he understands when I ask

him.

I suggested that maybe they can rephrase a question when asking him

and they basically told me that it's too time consuming. I'm so

disappointed in his school system. Everyday my child comes home with

a note about disruptive behavior. When I dropped him off at school

last week I noticed there was a partition that separated him from

the

rest of the class. I was never notified of this and I had no idea

how

long it was there. During the meeting we had with his teachers, they

informed me that they placed it there because his behavior was

distracting the other children. On one day his eraser came off his

pencil and he had a very bad day. I felt so angry with this staff.

They can't understand how upsetting this one thing can be to my son.

I really wish I could afford to stay home and homeschool my son but

I

can't financially. Every morning when I get him dressed to go to

school he tells me that he doesn't want to go and it's been

happening

more frequently. It's a struggle for me as his mother. I want to

protect him from the world. I let him stay home yesterday. It's so

hard because I want him to stay home rather than go to school. Any

advice on how to handle this? We only have 1 elementary school in

our

district so transferring him to another school isn't an option.

Vonita

Hi Vonita,

They need to get educated. You should go to wrightslaw.com and

start

learning about the process and your rights.

First, when a child's behavior is interfering with his education or

the

education of others, they need to do a " functional behavior

assessment. " My

computer is in the hospital so I don't have my links handy, however

you can put

that in any search engine and find out about how they work.

He needs an IEP and people need to get involved with helping him

learn how

to behave appropriately and more importantly, how to make friends and

be a

friend. All of these skills are vital to growing up to be

independent. Another

thing is that you will have to be the one who pushes these folks to

learn

about AS and about ways of educating them. I would vigorously

advocate for

them to attend local conferences, find books or video's and loan

them to the

teachers (Tony Attwood has a great video on AS, for instance). I

would find out

where your sped services come from - for example here in Ohio we

have

" serrc's " which are regional centers of information and education

about sped needs.

They should be helpful in providing information to you and to the

school.

Also, try to find a therapist or advocate or doctor in your area who

can help

you advocate and bring in information as well. Being a small school

is no

excuse for not providing an appropriate education. You will just

have to do a

lot of pushing to get it to happen.

Roxanna

January 26, 2006

On Wed, 2006-01-25 at 11:13, vonitabjn wrote:

> Thanks Roxanna. I see that I have a huge road ahead of me and I know

> that my son's education is most important to me and I don't feel as

> if the teachers feel the same way. Everyday he's coming home with

> referrals to the principal's office related to his behavior. They are

> telling me things like his behavior is frightening the other

> children. He " growled " in class yesterday. A 6 year old boy growling

> in class is scaring the other students. I get so mad at this school.

> He's the only autistic child in his classroom and his behavior

> definitely stands out from the others. They make a point of telling

> me this almost daily. Right now I'm considering homeschooling him.

> I'm just so fed up. I have a lot of research to do and I never ever

> thought that the school didn't have my son's best interest in mind,

> until now.

** There is a really good Aspie homeschooling list if you are interested

in that. I have been homeschooling mine and I've noticed that his

behaviors are so much easier to manage.

** **

>

> ______________________________________________________________________

January 26, 2006

Thanks I'm interested.

Vonita

> > Thanks Roxanna. I see that I have a huge road ahead of me and I

know

> > that my son's education is most important to me and I don't feel

as

> > if the teachers feel the same way. Everyday he's coming home with

> > referrals to the principal's office related to his behavior. They

are

> > telling me things like his behavior is frightening the other

> > children. He " growled " in class yesterday. A 6 year old boy

growling

> > in class is scaring the other students. I get so mad at this

school.

> > He's the only autistic child in his classroom and his behavior

> > definitely stands out from the others. They make a point of

telling

> > me this almost daily. Right now I'm considering homeschooling

him.

> > I'm just so fed up. I have a lot of research to do and I never

ever

> > thought that the school didn't have my son's best interest in

mind,

> > until now.

>

> ** There is a really good Aspie homeschooling list if you are

interested

> in that. I have been homeschooling mine and I've noticed that his

> behaviors are so much easier to manage.

>

> ** **

> >

______________________________________________________________________

>

January 26, 2006

Thanks I'm interested.

Vonita

> > Thanks Roxanna. I see that I have a huge road ahead of me and I

know

> > that my son's education is most important to me and I don't feel

as

> > if the teachers feel the same way. Everyday he's coming home with

> > referrals to the principal's office related to his behavior. They

are

> > telling me things like his behavior is frightening the other

> > children. He " growled " in class yesterday. A 6 year old boy

growling

> > in class is scaring the other students. I get so mad at this

school.

> > He's the only autistic child in his classroom and his behavior

> > definitely stands out from the others. They make a point of

telling

> > me this almost daily. Right now I'm considering homeschooling

him.

> > I'm just so fed up. I have a lot of research to do and I never

ever

> > thought that the school didn't have my son's best interest in

mind,

> > until now.

>

> ** There is a really good Aspie homeschooling list if you are

interested

> in that. I have been homeschooling mine and I've noticed that his

> behaviors are so much easier to manage.

>

> ** **

> >

______________________________________________________________________

>

January 26, 2006

On Thu, 2006-01-26 at 14:05, vonitabjn wrote:

> Thanks I'm interested.

** The name of the group is asyoulikeit

It's a great group with a lot of really cool people! I highly recommend

it.

My Aspie does so well, I know he'd have been lost in the cracks at

public school. Here at home he learns at his own pace AND does things at

levels way faster then they could accomidate at public schools. Plus I

have the added help of having therapies that I can schedule during the

day instead of after school. He's doing wonderfully and I highly

recommend homeschooling to parents who feel up to it. It's a challenge

but in certain areas homeschooling is just SO much better! Here in Texas

its great!

** **

>

> ______________________________________________________________________

January 31, 2006

On Thu, 2006-01-26 at 14:05, vonitabjn wrote:

> Thanks I'm interested.

>

** Check out the group asyoulikeit

It's worth it.

** Li Ferelwing **

>

> ______________________________________________________________________

February 2, 2006

In a message dated 1/26/2006 1:55:59 PM Eastern Standard Time,