Hi from a newbie

August 9, 2008

Hi ,

Looks like you're dealing with multiple layers of assistance-needing-

folks! Power and strength to you!

I have yet to find out just what is offered in my community as we

haven't qualified for ANYTHING up to now, but my regional center says

that probably all they'll be able to do is offer a social skills

group if anything can be found for my daughters' age group. I want

more. I think that an ABA type program or RDI program still stands a

chance of helping, but I would love to hear from folks who have

actually tried similar programs at this late date.

My daughters did not relate well to the handicapped meetings I

brought them to a couple of times in the past. They enjoyed the

crafts, but not the people.

Their one major interest in life is swing dancing. I am trying to

use that to be the wedge to break into other areas. Since this is

certainly a social activity, I'm trying to get help fast enough to

capitilize on this interest and help my daughters learn to interact

in a positive way that encourages other people to view them as dance

partners, and hopefully, friends.

My problem is that at this age, a parent's role becomes different and

my advice isn't necessarily what my daughters want to hear. I've got

to find an advisor who is familiar with autism that can take my

place. We tried one psychologist, but the responses she was drilling

just made her students sound like trite executives. Ah well.

Thanks,

Sheila

> There are also all kinds of activities in the community in which

you

> can get them involved. Check out your city parks and recreational

> centers to see what they offer. I know that we have a monthly

dance

> for mentally disabled adults. They also have a 3-day retreat twice

a

> year where they go up to a ranch that they rent out and take all of

> the " kids " horse back riding and sit around a camp fire and they

have

> a BLAST!

>

> I'm not sure if this information helps you at all or if it's what

you

> were looking for but I wish you and the twins all the best!

>

August 9, 2008

sheila where are of you located?

August 9, 2008

Hi Sondra,

I'm in Santa Barbara.

Sheila

>

> sheila where are of you located?

>

August 9, 2008

Hi Sondra,

I'm in Santa Barbara.

Sheila

>

> sheila where are of you located?

>

August 9, 2008

Hi Sondra,

I'm in Santa Barbara.

Sheila

>

> sheila where are of you located?

>

August 9, 2008

Hi Sheila,

We're in Ventura County (Newbury Park), so we also go through TCRC.

My daughter is 8. Have you spoken to anyone at the UCSB Autism

Center? My daughter went through the Koegel PRT program there and

they might give you some ideas and help steer you in the right

direction up in the SB area. We've got some great programs down here,

but I'm not so familiar with what you've got up there. Do you have a

good SC through Regional Center?

Take care,

August 9, 2008

Hi Sheila,

We're in Ventura County (Newbury Park), so we also go through TCRC.

My daughter is 8. Have you spoken to anyone at the UCSB Autism

Center? My daughter went through the Koegel PRT program there and

they might give you some ideas and help steer you in the right

direction up in the SB area. We've got some great programs down here,

but I'm not so familiar with what you've got up there. Do you have a

good SC through Regional Center?

Take care,

August 9, 2008

Hi Sheila,

We're in Ventura County (Newbury Park), so we also go through TCRC.

My daughter is 8. Have you spoken to anyone at the UCSB Autism

Center? My daughter went through the Koegel PRT program there and

they might give you some ideas and help steer you in the right

direction up in the SB area. We've got some great programs down here,

but I'm not so familiar with what you've got up there. Do you have a

good SC through Regional Center?

Take care,

August 9, 2008

santa barba is of far away from I to think because I to live in Ohio

and not sure where the other place is to be. I to be of curious as my

own daughter of Aimee is of similar to you daughter she loves of dance

more ballet and hip hop and modern and resists any sort of program set

for those with a variety of disability. she likes of the programs but

does not want to be centered out as a group she does not like that. but

she is of under a waiver in our state and does get of supports from

MRDD and gets of medicaid.

as for me that sort of thing does not cause of me an issue as much

because i to like to be part of a group doing a joint activity or

having a mutual purpose, but do not like to feel forced to have to

interact in a stuctured social way where I to feel centered out to

share with the purpose of so called forced friendships. I to like to

have of my own space and time to feel okay and find one I to connect to

and then can find a way to communicate at my own pace with that person.

if it feels forced it causes of me to shut down.

sondra

August 9, 2008

santa barba is of far away from I to think because I to live in Ohio

and not sure where the other place is to be. I to be of curious as my

own daughter of Aimee is of similar to you daughter she loves of dance

more ballet and hip hop and modern and resists any sort of program set

for those with a variety of disability. she likes of the programs but

does not want to be centered out as a group she does not like that. but

she is of under a waiver in our state and does get of supports from

MRDD and gets of medicaid.

as for me that sort of thing does not cause of me an issue as much

because i to like to be part of a group doing a joint activity or

having a mutual purpose, but do not like to feel forced to have to

interact in a stuctured social way where I to feel centered out to

share with the purpose of so called forced friendships. I to like to

have of my own space and time to feel okay and find one I to connect to

and then can find a way to communicate at my own pace with that person.

if it feels forced it causes of me to shut down.

sondra

August 9, 2008

santa barba is of far away from I to think because I to live in Ohio

and not sure where the other place is to be. I to be of curious as my

own daughter of Aimee is of similar to you daughter she loves of dance

more ballet and hip hop and modern and resists any sort of program set

for those with a variety of disability. she likes of the programs but

does not want to be centered out as a group she does not like that. but

she is of under a waiver in our state and does get of supports from

MRDD and gets of medicaid.

as for me that sort of thing does not cause of me an issue as much

because i to like to be part of a group doing a joint activity or

having a mutual purpose, but do not like to feel forced to have to

interact in a stuctured social way where I to feel centered out to

share with the purpose of so called forced friendships. I to like to

have of my own space and time to feel okay and find one I to connect to

and then can find a way to communicate at my own pace with that person.

if it feels forced it causes of me to shut down.

sondra

August 10, 2008

Hi Sheila,

Have you checked into a Big Sisters program? My sister had a " Big

Sister " and they palled around all over the place and just hung out

and my sister had a great time with her because sh didn't see her as

an authority figure as much as she did a best friend. They went out

to dinner, dancing, the movies, all the thing that " regular friends "

do. They may be able to take the girls dancing and offer the

additional assistance needed while allowing the freedom of not having

Mom watching.

Just food for thought!

>

> Hi ,

>

> Looks like you're dealing with multiple layers of assistance-

needing-

> folks! Power and strength to you!

>

> I have yet to find out just what is offered in my community as we

> haven't qualified for ANYTHING up to now, but my regional center

says

> that probably all they'll be able to do is offer a social skills

> group if anything can be found for my daughters' age group. I want

> more. I think that an ABA type program or RDI program still stands

a

> chance of helping, but I would love to hear from folks who have

> actually tried similar programs at this late date.

>

> My daughters did not relate well to the handicapped meetings I

> brought them to a couple of times in the past. They enjoyed the

> crafts, but not the people.

>

> Their one major interest in life is swing dancing. I am trying to

> use that to be the wedge to break into other areas. Since this is

> certainly a social activity, I'm trying to get help fast enough to

> capitilize on this interest and help my daughters learn to interact

> in a positive way that encourages other people to view them as

dance

> partners, and hopefully, friends.

>

> My problem is that at this age, a parent's role becomes different

and

> my advice isn't necessarily what my daughters want to hear. I've

got

> to find an advisor who is familiar with autism that can take my

> place. We tried one psychologist, but the responses she was

drilling

> just made her students sound like trite executives. Ah well.

>

> Thanks,

> Sheila

>

> > There are also all kinds of activities in the community in which

> you

> > can get them involved. Check out your city parks and recreational

> > centers to see what they offer. I know that we have a monthly

> dance

> > for mentally disabled adults. They also have a 3-day retreat

twice

> a

> > year where they go up to a ranch that they rent out and take all

of

> > the " kids " horse back riding and sit around a camp fire and they

> have

> > a BLAST!

> >

> > I'm not sure if this information helps you at all or if it's what

> you

> > were looking for but I wish you and the twins all the best!

> >

>

August 10, 2008

Hi Sheila,

Have you checked into a Big Sisters program? My sister had a " Big

Sister " and they palled around all over the place and just hung out

and my sister had a great time with her because sh didn't see her as

an authority figure as much as she did a best friend. They went out

to dinner, dancing, the movies, all the thing that " regular friends "

do. They may be able to take the girls dancing and offer the

additional assistance needed while allowing the freedom of not having

Mom watching.

Just food for thought!

>

> Hi ,

>

> Looks like you're dealing with multiple layers of assistance-

needing-

> folks! Power and strength to you!

>

> I have yet to find out just what is offered in my community as we

> haven't qualified for ANYTHING up to now, but my regional center

says

> that probably all they'll be able to do is offer a social skills

> group if anything can be found for my daughters' age group. I want

> more. I think that an ABA type program or RDI program still stands

a

> chance of helping, but I would love to hear from folks who have

> actually tried similar programs at this late date.

>

> My daughters did not relate well to the handicapped meetings I

> brought them to a couple of times in the past. They enjoyed the

> crafts, but not the people.

>

> Their one major interest in life is swing dancing. I am trying to

> use that to be the wedge to break into other areas. Since this is

> certainly a social activity, I'm trying to get help fast enough to

> capitilize on this interest and help my daughters learn to interact

> in a positive way that encourages other people to view them as

dance

> partners, and hopefully, friends.

>

> My problem is that at this age, a parent's role becomes different

and

> my advice isn't necessarily what my daughters want to hear. I've

got

> to find an advisor who is familiar with autism that can take my

> place. We tried one psychologist, but the responses she was

drilling

> just made her students sound like trite executives. Ah well.

>

> Thanks,

> Sheila

>

> > There are also all kinds of activities in the community in which

> you

> > can get them involved. Check out your city parks and recreational

> > centers to see what they offer. I know that we have a monthly

> dance

> > for mentally disabled adults. They also have a 3-day retreat

twice

> a

> > year where they go up to a ranch that they rent out and take all

of

> > the " kids " horse back riding and sit around a camp fire and they

> have

> > a BLAST!

> >

> > I'm not sure if this information helps you at all or if it's what

> you

> > were looking for but I wish you and the twins all the best!

> >

>

August 10, 2008

Hi ,

A Big Sister sounds like fun. I don't have any idea if there are any

in town -- do you know who usually sponsors a Big Sister program?

Thanks,

Sheila

> >

> > Hi ,

> >

> > Looks like you're dealing with multiple layers of assistance-

> needing-

> > folks! Power and strength to you!

> >

> > I have yet to find out just what is offered in my community as we

> > haven't qualified for ANYTHING up to now, but my regional center

> says

> > that probably all they'll be able to do is offer a social skills

> > group if anything can be found for my daughters' age group. I

want

> > more. I think that an ABA type program or RDI program still

stands

> a

> > chance of helping, but I would love to hear from folks who have

> > actually tried similar programs at this late date.

> >

> > My daughters did not relate well to the handicapped meetings I

> > brought them to a couple of times in the past. They enjoyed the

> > crafts, but not the people.

> >

> > Their one major interest in life is swing dancing. I am trying

to

> > use that to be the wedge to break into other areas. Since this

is

> > certainly a social activity, I'm trying to get help fast enough

to

> > capitilize on this interest and help my daughters learn to

interact

> > in a positive way that encourages other people to view them as

> dance

> > partners, and hopefully, friends.

> >

> > My problem is that at this age, a parent's role becomes different

> and

> > my advice isn't necessarily what my daughters want to hear. I've

> got

> > to find an advisor who is familiar with autism that can take my

> > place. We tried one psychologist, but the responses she was

> drilling

> > just made her students sound like trite executives. Ah well.

> >

> > Thanks,

> > Sheila

> >

> > > There are also all kinds of activities in the community in

which

> > you

> > > can get them involved. Check out your city parks and

recreational

> > > centers to see what they offer. I know that we have a monthly

> > dance

> > > for mentally disabled adults. They also have a 3-day retreat

> twice

> > a

> > > year where they go up to a ranch that they rent out and take

all

> of

> > > the " kids " horse back riding and sit around a camp fire and

they

> > have

> > > a BLAST!

> > >

> > > I'm not sure if this information helps you at all or if it's

what

> > you

> > > were looking for but I wish you and the twins all the best!

> > >

> >

>

August 10, 2008

In a message dated 8/9/08 4:56:28 P.M. Eastern Daylight Time,

brucem@... writes:

I'm in Santa Barbara.

Sheila

hi sheila

im eric married to pennie for 13 years. and our daughter abby is 11. and 4

inches taller then my wife we are in michigan welcome to the group.

eric abbys dad

**************Looking for a car that's sporty, fun and fits in your budget?

Read reviews on AOL Autos.

(http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017

)

August 10, 2008

In a message dated 8/9/08 4:56:28 P.M. Eastern Daylight Time,

brucem@... writes:

I'm in Santa Barbara.

Sheila

hi sheila

im eric married to pennie for 13 years. and our daughter abby is 11. and 4

inches taller then my wife we are in michigan welcome to the group.

eric abbys dad

**************Looking for a car that's sporty, fun and fits in your budget?

Read reviews on AOL Autos.

(http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017

)

August 10, 2008

In a message dated 8/9/08 4:56:28 P.M. Eastern Daylight Time,

brucem@... writes:

I'm in Santa Barbara.

Sheila

hi sheila

im eric married to pennie for 13 years. and our daughter abby is 11. and 4

inches taller then my wife we are in michigan welcome to the group.

eric abbys dad

**************Looking for a car that's sporty, fun and fits in your budget?

Read reviews on AOL Autos.

(http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017

)

August 10, 2008

Hi Rhonda,

My daughters just graduated. Yes, they maintained grade level and

above, actually completing a year of college before high school

graduation. We started to home-school in sixth grade when it became

obvious that they no longer fit into our public school. I hoped that

if I could build their confidence in academics that it would carry

over to other areas of their lives. They finally discovered that,

yes, they are intelligent. (Confidence didn't carry over to other

areas, though, unfortunately.) The last five years we've been home-

schooling through a public charter school which gives us access to

our community college, takes care of paperwork, and provides

educational services such as an accredited teacher. Good!

But....the district doesn't have any kind of transition services, we

would have to drive an hour each way to have the possibility of

speech therapy...you get the idea. Except for extra test time, I'm

afraid the school had zilch to offer. I had hoped for social

coaching, but didn't get anywhere with that request. Nada for

anything social (guess that has nothing to do with academics lol)

GRUMBLE! So, I'm now pinning my hopes on our regional center and

don't know what I'll do if they don't come through with something.

Thanks for advice,

Sheila

> >

> > Greetings,

> >

> > I'm the mother of twin girls, 18, who have had a recent diagnosis

> of

> > autism (and prior diagnoses of Asperger's and PDD/NOS). Now that

> we

> > are finally being seen by our Regional Center, I would appreciate

> > input as to what programs might be beneficial for older

> kids/adults.

> > Do any of you have any experiences for this age group?

> >

> > Let me give you a brief bio of our romp through the medical and

> > educational communities.

> >

> > There were " soft signs of autism " from infancy. The girls didn't

> > look in my face when nursing, didn't explore, and didn't always

> turn

> > towards their name or noise.

> >

> > When the girls were about 3.5 yrs old, we had them evaluated for

> > autism (which turned out to be one of the worst experiences of my

> > life). The doctor's diagnosis was that she didn't know what the

> > problem was but it must be something that I was doing.

> >

> > At 8 yrs, one girl was seen by a psychiatrist who diagnosed

> > PDD/NOS. She was the first one to say Prozac was the treatment

(with

> > no further suggestions). This was also my first round of talking

to

> > the school, where the special ed. teacher said that my daughters

> > didn't have autism, it was purely behavioral, and there would be

no

> > place for school assistance. I didn't know enough to realize that

I

> > should start at the top of the educational chain rather than the

> > bottom. I think this was the first time I contacted our regional

> > center, but didn't make it past the receptionist. Since we didn't

> > want to do Prozac, and the school wouldn't help, I was stymied.

> >

> > Age 9 -- diagnosis by development expert of twin symbiosis.

> >

> > Age 15 -- diagnosis of anxiety with underlying autism by

> psychologist

> > (who sent us to a different psychiatrist) and tried hypnosis.

> >

> > Age 16 -- evaluation by psychiatrist with diagnosis of Asperger's

> > Syndrome or PDD/NOS. He, too, only suggested Prozac. This was when

> > I also really really tried to get some help from the school

> district,

> > but they ended up just suggesting I go to our regional center

(and

> > also gave extra test time). There were no transition or other

> > services available in our district. Of course, at our regional

> > center, I didn't get past the telephone receptionist.

> >

> > Age 17 -- saw a different psychiatrist who seemed to agree with

the

> > last one, but without giving a complete evaluation. His only

> program,

> > also, was for medications.

> >

> > age 18 -- thorough evaluation by a psychologist at California

> > Institute of Technology because the girls signed up to be research

> > subjects for autism research the school is conducting. This was

> > actually the best and most thorough evaluation they've had, and

the

> > diagnosis was autism (not Asperger's or PDD/NOS)

> >

> > age 18 -- meetings with local psychologist and physician (whom I

> > met through TACA), both of whom said they thought a diagnosis of

> > autism and not Asperger's would be correct and that I should be

> seen

> > by our regional center.

> >

> > age 18 -- finally fought my way past the TCRC receptionist (who

once

> > again said that if there were no academic difficulties, then it

> > wasn't a TCRC problem) and was given an intake appointment. Last

> month

> > we had the psychological evaluation and the diagnosis was autism

> > with the suggestion of TCRC assistance (with the evaluator

> wondering

> > why we hadn't applied before -- ARRGGHH). So, now, 15 years after

I

> > first tried to get help for what I was sure from my own research

> > would be considered something on the autism spectrum, I think we

> > might be getting somewhere (if I continue to push and know what to

> > push for!) Do I regret having lost 15 years of help? YES!

> >

> > Your input is appreciated.

> >

> > Sheila

> >

>

August 10, 2008