Re: Newly diagnosed

[Guest guest]

Hi new to the group, I am new too, just joined a couple of months ago and

I too would love all that wonderful information about DS/ASD but you know I

don't think that enough research has been done on this subject because like

you said for so long drs' teachers etc have assumed that everything was related

to having DS.

It seems there are a lot of experienced parents in this group that have

lived with this and the diagnosis for years now so they will be good sources of

information. Thank you all for being here for us. (Mom to Faith

6yrs DS/Autism.

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

5

48)

[Guest guest]

Welcome aboard this list. There are several who live out there in the

DFW area who also have son/daughter with DS & AU. Hopefully they would

love to respond and share their resource information.

I am a former resident from there too, plus this was one of my

childhood native town and still have my paternal side of the family

there, so I tend to visit once in awhile but most of all when there

are some wonderful workshops, meetings & State AU Conference.

As a matter of fact this year it will be held out in Arlington, hope

to see you there.

I have a 19 y/o son who was born with DS/Trisomy 21 & dx'd at 13 y/o

with Autism. Due to also doing some homework too.

We live out here in San .

When my son use to attend out there with the Keller SD & HEB school

district, no one knew how to work with him when he was 3-5 or 6 y/o.

At least his first public school teacher noticed something and told us

to have him tested for ADHD. We did and several doc's whom my son was

seen by ruled it out so of course I was just still trying to learn

about how to raise a child with Down syndrome. His teacher use to use

a Rifton chair on him as he would stay seated and he master being a

good runner & escape artist when on the loose.

At home we had to live like Fort Knox and the history begins with the

challenges we dealt with.

Did join the Tarrant DS support group when he was a youngster and we

just did not fit in.

The school your son attends, they could blame it on the DS all they

want but you continue to follow your gut instinct on what he needs, so

that he could be able to at least function on a daily basis and not

miss out like my son did.

The Disability Solutions Newsletter was one of the best resource

information but in the eyes of most Texas school district it is having

to empower/educate yourself with what you can.

Once my son was dx'd with autism, this was my new chapter of learning

what I could and when there was nothing here in SA that striked a cord

to what my son would benefit from when I came aboard this list whom

shared their experiences, especially programs that I never heard of or

mentioned during my son's elementary years, did lots of googling and

of course join other listserves and glad I did.

Finally a wonderful support group out in the DFW was formed and I

highly recommend that you check it out, this is what helped me during

my rookie years.

Do not overwhelm yourself too much, start of with the basics,

understanding about autism, behavior programs like ABA, sensory

integration or sensory process disorder, communication information and

a little of the nutrition part when Mika is one of the speakers, check

the schedule.

Add your name to their contact list so that you could receive some

wonderful information.

http://www.featnt.org/

There are more resource info around the DFW area but this would be a

good start in the mean time.

Also request from the school district what type of resource

information do they have, now that you have received the diagnosis and

it must be on his IEP.

Irma,19,DS/ASD

>

> Hello! I am new to the group. We live in the Dallas-Fort Worth area

> and have a 3 1/2 year old son with Mosaic Down Syndrome and he was just

> diagnosed with Autism two weeks ago. Finally, in all my research I

> found this group and am so thankful.

> I knew that getting services for Autism was difficult, but no one could

> have prepared me for what I have experienced in the last two weeks.

> From disbelief and doubt at my son's school regarding the diagnosis (he

> is in a program at our elementary school and they still think

> everything is just because of the Downs)to the lack of services that

> insurance will pay for-I must say that I am overwhelmed. Right now I

> am trying to take it all in and read as much as possible about the dual

> diagnosis-I know that I will have to help and educate the school

> district and his teachers and want to get as much information as

> possible. If anyone knows of any great resources out there to get

> information regarding DS-ASD, I would be most grateful. Also, if

> anyone out there lives in the DFW area and know of any specific

> resources in our metroplex, please let me know.

> I am looking forward to reading more and hearing more about your

> families. Thank you for this group.

>

[Guest guest]

>His teacher used a Rifton chair on him as he would (NOT)stay seated

and he master being a good runner & escape artist when on the loose.

Yep, a typo. Meant NOT.

Irma

[Guest guest]

Welcome. You'll find there's not a lot of info on DS-ASD out there. Google it

and you will find some info. Also the Disability Solutions newsletter had an

issue on it that is still on that website. For us, it helped to give the school

the notes from the diagnosing doctors (in 's case, a developmental

pediatrician and then, for a second opinion, a child psychiatrist). Their

diagnosis notes were very complete and specific, and he qualified for autism

right away. Ironically, that led to them doing a nonverbal IQ test on him. He'd

always failed the verbal ones miserably. He scored 85-105 on all the nonverbal

measures and lost his MMR label as a result! Good thing he then had the autism

label to keep his services!

Good luck. Your son is still your son. Autism doesn't change him, just helps

explain him! My son was just diagnosed last summer, and I'm still on a learning

curve myself.

Beth, mom to , age 8, with DS, autism, and a leukemia survivor; also mom to

, 14, and , 11

Newly diagnosed

Hello! I am new to the group. We live in the Dallas-Fort Worth area

and have a 3 1/2 year old son with Mosaic Down Syndrome and he was just

diagnosed with Autism two weeks ago. Finally, in all my research I

found this group and am so thankful.

I knew that getting services for Autism was difficult, but no one could

have prepared me for what I have experienced in the last two weeks.

From disbelief and doubt at my son's school regarding the diagnosis (he

is in a program at our elementary school and they still think

everything is just because of the Downs)to the lack of services that

insurance will pay for-I must say that I am overwhelmed. Right now I

am trying to take it all in and read as much as possible about the dual

diagnosis-I know that I will have to help and educate the school

district and his teachers and want to get as much information as

possible. If anyone knows of any great resources out there to get

information regarding DS-ASD, I would be most grateful. Also, if

anyone out there lives in the DFW area and know of any specific

resources in our metroplex, please let me know.

I am looking forward to reading more and hearing more about your

families. Thank you for this group.

[Guest guest]

There is an article within this group called article from Dr. Capone all about

the differet types of issues that can and do come along with DS. I would print

it out and give it to everyone who is involved with your son. I pass it along

to doctors, teachers, therapist to show them that autism can exist and my son

does have it.

Hope it helps you.

Holly in PA

I used to live in the DFW area also!

[Guest guest]

Welcome to our new members. Please be sure to check out the files and links at

the group webpage where a ton of valuable info is stored. I didn't see this link

there but here is where you will find a history and complilation of alot of info

re: DS-Aut. Read it all!

For Autism, the link is:

http://www.altonweb.com/cs/downsyndrome/autism.html

Which opens the Autism & PDD folder.

THere is also a new book out called Mental Wellness inAdults with Down Syndrome

that has a chapter on the dual diagnosis; plus I just finished reading Kent

Mcleod's book from 5 years ago titled Down Syndrome and Vitamin Therapy in which

he mentions the dual diagnosis quite a bit.

Sherry mom to 19, DS-Aut, Crohn's (dtr)

[Guest guest]

Hello and welcome! You're lucky you were able to get your son dx'd

early. Kayla was dx'd when she just turned 3. We're in NY and haven't

had any problem getting our school district to accept the dual

diagnosis. But technically, it shouldn't really matter because the

IEP is supposed to be based on the INDIVIDUAL child's needs. So they

can't say " we only do this for kids with DS " or " we only do this for

kids with autism " . The reality of course if much different! We were

able to get Kayla an extra session of speech as well as ABA because

of her autism dx.

If you go on this groups yahoo site, there's lots of great links and

files to help you. It's a great place to start.

Ecki

Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

http://oppositekids.blogspot.com/

>

> >

> > Hello! I am new to the group. We live in the Dallas-Fort Worth

area

> > and have a 3 1/2 year old son with Mosaic Down Syndrome and he

was just

> > diagnosed with Autism two weeks ago. Finally, in all my research

I

> > found this group and am so thankful.

> > I knew that getting services for Autism was difficult, but no one

could

> > have prepared me for what I have experienced in the last two

weeks.

> > From disbelief and doubt at my son's school regarding the

diagnosis (he

> > is in a program at our elementary school and they still think

> > everything is just because of the Downs)to the lack of services

that

> > insurance will pay for-I must say that I am overwhelmed. Right

now I

> > am trying to take it all in and read as much as possible about

the dual

> > diagnosis-I know that I will have to help and educate the school

> > district and his teachers and want to get as much information as

> > possible. If anyone knows of any great resources out there to

get

> > information regarding DS-ASD, I would be most grateful. Also, if

> > anyone out there lives in the DFW area and know of any specific

> > resources in our metroplex, please let me know.

> > I am looking forward to reading more and hearing more about your

> > families. Thank you for this group.

> >

>

[Guest guest]

>Hello. My name is Stella Harrelson and I have a daughter that is 10

yrs old. She was recently diagnoised with Autism probably about 6mts

ago. We have been trying her some differant mecidines, Zoloft and

Tenax. We live in Florida, and I was told yest. that the school

system no longer goes by a Dr's order to " label " them with a dual

digonises; that the school had test and evualuations to preform. I

had to fill out a social history form yest. and return it today in

order to get ready for the IEP. Has anyone else heard of that?

> > >

> > > Hello! I am new to the group. We live in the Dallas-Fort

Worth

> area

> > > and have a 3 1/2 year old son with Mosaic Down Syndrome and he

> was just

> > > diagnosed with Autism two weeks ago. Finally, in all my

research

> I

> > > found this group and am so thankful.

> > > I knew that getting services for Autism was difficult, but no

one

> could

> > > have prepared me for what I have experienced in the last two

> weeks.

> > > From disbelief and doubt at my son's school regarding the

> diagnosis (he

> > > is in a program at our elementary school and they still think

> > > everything is just because of the Downs)to the lack of services

> that

> > > insurance will pay for-I must say that I am overwhelmed. Right

> now I

> > > am trying to take it all in and read as much as possible about

> the dual

> > > diagnosis-I know that I will have to help and educate the

school

> > > district and his teachers and want to get as much information

as

> > > possible. If anyone knows of any great resources out there to

> get

> > > information regarding DS-ASD, I would be most grateful. Also,

if

> > > anyone out there lives in the DFW area and know of any specific

> > > resources in our metroplex, please let me know.

> > > I am looking forward to reading more and hearing more about

your

> > > families. Thank you for this group.

> > >

> >

>

[Guest guest]

Hi!

I also live in Florida and my 14 year-old has DS and PDD...(an umbrella

diagnosis for sure). He has many signs and symptoms of autism! Anyway, when he

was diagnosed at the University of Florida, (we live in Gainesville, how about

you?) we were referred to the Center for Autism and Related Disorders. I often

joked how his autism diagnosis was the best thing that ever happened as it is

the only thing that has gotten us services. Services, meaning someone from CARD

who manages his case and has been a great consultant over the years. Our CARD

person has attended IEPs, medical appointments with us and I have discovered in

the last few years that there is a partnership program with CARD and the school

system so that Jake's CARD person visits his class (last year it was 2Xmonth and

this year 1X month) - but that is negotiable depending on the needs of the child

- and works with his teacher to help create the best classroom atmosphere and

offer " best practices " for instruction. This is in the inclusive class as well

as self-contained models. Do you have a CARD center near you? As I write I am

aware that the Florida CARD conference has just started for the weekend. I

think it is in Orlando or Tampa. Anyway, hope this helps!

________________________________

> To:

> From: stellarah@...

> Date: Fri, 25 Jan 2008 21:14:39 +0000

> Subject: Re: Newly diagnosed

>

>

>>Hello. My name is Stella Harrelson and I have a daughter that is 10

> yrs old. She was recently diagnoised with Autism probably about 6mts

> ago. We have been trying her some differant mecidines, Zoloft and

> Tenax. We live in Florida, and I was told yest. that the school

> system no longer goes by a Dr's order to " label " them with a dual

> digonises; that the school had test and evualuations to preform. I

> had to fill out a social history form yest. and return it today in

> order to get ready for the IEP. Has anyone else heard of that?

>

> --- In

_________________________________________________________________

Need to know the score, the latest news, or you need your Hotmail®-get your

" fix " .

http://www.msnmobilefix.com/Default.aspx

[Guest guest]

Our school district always does a triennial review. I just had to to a

Vineland interview for my older daughter to see if she is " still " on

the spectrum. I don't know why people think autism just goes away.

Now, if they don't agree with the dual dx and don't provide the

services....well, if push comes to shove and you take them to court, a

judge is probably more likely to take the report of an experienced MD

(or two or three, get whatever you need) over that of a mere school

psychologist. Of course, if you are filling out or being interviewed on

those standardized tests and you " need " an diagnosis, it's really not

too hard to answer them in such a way to get it.

Ecki

Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

http://oppositekids.blogspot.com/

> >>Hello. My name is Stella Harrelson and I have a daughter that is 10

> > yrs old. She was recently diagnoised with Autism probably about 6mts

> > ago. We have been trying her some differant mecidines, Zoloft and

> > Tenax. We live in Florida, and I was told yest. that the school

> > system no longer goes by a Dr's order to " label " them with a dual

> > digonises; that the school had test and evualuations to preform. I

> > had to fill out a social history form yest. and return it today in

> > order to get ready for the IEP. Has anyone else heard of that?

> >

> > --- In

> _________________________________________________________________

[Guest guest]

>

> Our school district always does a triennial review. I just had to

to a

> Vineland interview for my older daughter to see if she is " still "

on

> the spectrum. I don't know why people think autism just goes away.

>

> Now, if they don't agree with the dual dx and don't provide the

> services....well, if push comes to shove and you take them to

court, a

> judge is probably more likely to take the report of an experienced

MD

> (or two or three, get whatever you need) over that of a mere

school

> psychologist. Of course, if you are filling out or being

interviewed on

> those standardized tests and you " need " an diagnosis, it's really

not

> too hard to answer them in such a way to get it.

>

> Ecki

> Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

> http://oppositekids.blogspot.com/

>

>

> > >>Hello. My name is Stella Harrelson and I have a daughter that

is 10

> > > yrs old. She was recently diagnoised with Autism probably

about 6mts

> > > ago. We have been trying her some differant mecidines, Zoloft

and

> > > Tenax. We live in Florida, and I was told yest. that the school

> > > system no longer goes by a Dr's order to " label " them with a

dual

> > > digonises; that the school had test and evualuations to

preform. I

> > > had to fill out a social history form yest. and return it

today in

> > > order to get ready for the IEP. Has anyone else heard of that?

> > >

> > > --- In

> > _________________________________________________________________

>I have never heard that the school psychologist and school testing

comes before a medical diagnosis by an experienced MD. I think the

best MD in the country for dual diagnosis with DS and autism is Dr.

Capone at Hopkins, if you can go there, he is the best.

Lots of people in the DS community respect him. He also will back

you up in the school community and helps with an onsite

social/schoool consultant. They will actually call your school

district for you, if needed. He really helped us, we are in PA.

[Guest guest]

Hey ,

a was accepted into the CARD program this year, but I wasn't

sure what all they offered. I haven't had anyone help out this far.

Thanks for the advise. She has a IEP coming up and maybe once then I

can get someone to help out on her curriculum. We live in the North

part of the County. Close to Pensacola. Thats where I have to take

her to see the Nuero. She has a great one, they see her in at the CMS

hospital. Everyone is trying to manage her medicines because she has

been acting so out of character. a goes to Westgate, which she

gets all kinds of Therapy. The school actually has a Snoozelon

Center. Its wonderful!!! It has all types of sensory items that is

suppose to help bring the kids out. I know they told me that she

responds good to items such as lava lamps, black lights, magnic

lights, music, and such. I'll find the schools website and give you

the website if you would like to look into the Snoozelon Center. It

might give you some ideas.

>

>

> Hi!

> I also live in Florida and my 14 year-old has DS and PDD...(an

umbrella diagnosis for sure). He has many signs and symptoms of

autism! Anyway, when he was diagnosed at the University of Florida,

(we live in Gainesville, how about you?) we were referred to the

Center for Autism and Related Disorders. I often joked how his

autism diagnosis was the best thing that ever happened as it is the

only thing that has gotten us services. Services, meaning someone

from CARD who manages his case and has been a great consultant over

the years. Our CARD person has attended IEPs, medical appointments

with us and I have discovered in the last few years that there is a

partnership program with CARD and the school system so that Jake's

CARD person visits his class (last year it was 2Xmonth and this year

1X month) - but that is negotiable depending on the needs of the

child - and works with his teacher to help create the best classroom

atmosphere and offer " best practices " for instruction. This is in

the inclusive class as well as self-contained models. Do you have a

CARD center near you? As I write I am aware that the Florida CARD

conference has just started for the weekend. I think it is in

Orlando or Tampa. Anyway, hope this helps!

>

> ________________________________

> > To:

> > From: stellarah@...

> > Date: Fri, 25 Jan 2008 21:14:39 +0000

> > Subject: Re: Newly diagnosed

> >

> >

> >>Hello. My name is Stella Harrelson and I have a daughter that is

10

> > yrs old. She was recently diagnoised with Autism probably about

6mts

> > ago. We have been trying her some differant mecidines, Zoloft and

> > Tenax. We live in Florida, and I was told yest. that the school

> > system no longer goes by a Dr's order to " label " them with a dual

> > digonises; that the school had test and evualuations to preform. I

> > had to fill out a social history form yest. and return it today in

> > order to get ready for the IEP. Has anyone else heard of that?

> >

> > --- In

> _________________________________________________________________

> Need to know the score, the latest news, or you need your Hotmail®-

get your " fix " .

> http://www.msnmobilefix.com/Default.aspx

>

[Guest guest]

For years we made visits to the mall just so Elie could go to the store

which sells novelties and has lots of black lights and lava lamps,

fluorescent possters, etc. I had never heard of Snoozelen so when I first

saw a room like that I was immediately reminded of our favorite store!!!

> Hey ,

>

> a was accepted into the CARD program this year, but I wasn't

> sure what all they offered. I haven't had anyone help out this far.

> Thanks for the advise. She has a IEP coming up and maybe once then I

> can get someone to help out on her curriculum. We live in the North

> part of the County. Close to Pensacola. Thats where I have to take

> her to see the Nuero. She has a great one, they see her in at the CMS

> hospital. Everyone is trying to manage her medicines because she has

> been acting so out of character. a goes to Westgate, which she

> gets all kinds of Therapy. The school actually has a Snoozelon

> Center. Its wonderful!!! It has all types of sensory items that is

> suppose to help bring the kids out. I know they told me that she

> responds good to items such as lava lamps, black lights, magnic

> lights, music, and such. I'll find the schools website and give you

> the website if you would like to look into the Snoozelon Center. It

> might give you some ideas.

>

> >

> >

> > Hi!

> > I also live in Florida and my 14 year-old has DS and PDD...(an

> umbrella diagnosis for sure). He has many signs and symptoms of

> autism! Anyway, when he was diagnosed at the University of Florida,

> (we live in Gainesville, how about you?) we were referred to the

> Center for Autism and Related Disorders. I often joked how his

> autism diagnosis was the best thing that ever happened as it is the

> only thing that has gotten us services. Services, meaning someone

> from CARD who manages his case and has been a great consultant over

> the years. Our CARD person has attended IEPs, medical appointments

> with us and I have discovered in the last few years that there is a

> partnership program with CARD and the school system so that Jake's

> CARD person visits his class (last year it was 2Xmonth and this year

> 1X month) - but that is negotiable depending on the needs of the

> child - and works with his teacher to help create the best classroom

> atmosphere and offer " best practices " for instruction. This is in

> the inclusive class as well as self-contained models. Do you have a

> CARD center near you? As I write I am aware that the Florida CARD

> conference has just started for the weekend. I think it is in

> Orlando or Tampa. Anyway, hope this helps!

> >

> > ________________________________

> > > To:

> > > From: stellarah@...

> > > Date: Fri, 25 Jan 2008 21:14:39 +0000

> > > Subject: Re: Newly diagnosed

> > >

> > >

> > >>Hello. My name is Stella Harrelson and I have a daughter that is

> 10

> > > yrs old. She was recently diagnoised with Autism probably about

> 6mts

> > > ago. We have been trying her some differant mecidines, Zoloft and

> > > Tenax. We live in Florida, and I was told yest. that the school

> > > system no longer goes by a Dr's order to " label " them with a dual

> > > digonises; that the school had test and evualuations to preform. I

> > > had to fill out a social history form yest. and return it today in

> > > order to get ready for the IEP. Has anyone else heard of that?

> > >

> > > --- In

> > __________________________________________________________

> > Need to know the score, the latest news, or you need your Hotmail®-

> get your " fix " .

> > http://www.msnmobilefix.com/Default.aspx

> >

>

>

>

--

Sara - Life is a journey- we choose the path.

[Guest guest]

Yes, we were just told at our son's tri-annual, that he does not fit their

profile for Autism " educationally " , but medically, it would still be in his

record. After about 45 minutes of what I consider to be " chicken and egg "

symantics, I conceded as medically, it is in his record. Their theory was

that because of the DS, they could not say that Autism was the reason he

exhibited x, y, and z characteristics. We just kept going round in circles

and since it wasn't going to change his services, we just moved on. They

couldn't get past the fact that he had always exhibited these things - well,

DUH! He has ALWAYS been autistic, it just took until he was older to get

the diagnosis.

Good luck.

_____

From: [mailto: ] On Behalf

Of stellarah

Sent: Friday, January 25, 2008 3:15 PM

To:

Subject: Re: Newly diagnosed

>Hello. My name is Stella Harrelson and I have a daughter that is 10

yrs old. She was recently diagnoised with Autism probably about 6mts

ago. We have been trying her some differant mecidines, Zoloft and

Tenax. We live in Florida, and I was told yest. that the school

system no longer goes by a Dr's order to " label " them with a dual

digonises; that the school had test and evualuations to preform. I

had to fill out a social history form yest. and return it today in

order to get ready for the IEP. Has anyone else heard of that?

> > >

> > > Hello! I am new to the group. We live in the Dallas-Fort

Worth

> area

> > > and have a 3 1/2 year old son with Mosaic Down Syndrome and he

> was just

> > > diagnosed with Autism two weeks ago. Finally, in all my

research

> I

> > > found this group and am so thankful.

> > > I knew that getting services for Autism was difficult, but no

one

> could

> > > have prepared me for what I have experienced in the last two

> weeks.

> > > From disbelief and doubt at my son's school regarding the

> diagnosis (he

> > > is in a program at our elementary school and they still think

> > > everything is just because of the Downs)to the lack of services

> that

> > > insurance will pay for-I must say that I am overwhelmed. Right

> now I

> > > am trying to take it all in and read as much as possible about

> the dual

> > > diagnosis-I know that I will have to help and educate the

school

> > > district and his teachers and want to get as much information

as

> > > possible. If anyone knows of any great resources out there to

> get

> > > information regarding DS-ASD, I would be most grateful. Also,

if

> > > anyone out there lives in the DFW area and know of any specific

> > > resources in our metroplex, please let me know.

> > > I am looking forward to reading more and hearing more about

your

> > > families. Thank you for this group.

> > >

> >

>

[Guest guest]

Ecki,

I am so with you on this one. I have struggled with for a long

time and have not joined any of the autism groups yet, but am hoping to get

a jump on this this year. I do wish there were local support groups for

kids that have both diagnosis. I live in North Carolina and whenever I have

attended DS support meetings(which I consequently was in charge of for a few

years) I remember feeling very sad and like what am I doing wrong, what do they

know that I don't. I just got a call in between writing and it was from a

Mom who has a typical DS child who attends the same school as my daughter only

she is in a regular classroom with a one on one. My daughter is in the

Autistic classroom with one on one I did not even ask for so I feel blessed in

so many ways to have her in her base school, with good teachers, assistants

and a place where she is accepted, but when I got the call, the Mom was asking

if we wanted tickets to see her daughter perform in a ballet recital today.

I can't go since we have church at 1:00 but a part of me could not help but

feel a little envious that her child can do this. That getting a place and a

person to work one one one with her child was easy, she did not have to

struggle to get anything. She said I want my daughter to go to school here ,

I

want my daughter to dance here etc. I have always had to struggle and fight

for everything and persist and take steps back and forth to get anything for

my daughter. All that being said, I still feel grateful for has been

given and done for my daughter this year. We have gone from darkness to light

this year.

The peace I have felt has been the biggest blessing I could ever ask for.

I do keep hope alive though that we will be able to find a

support group that we will fit into on a local level one day. We are not

alone

I'm sure but in the meantime I have you all.

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Fitting in doesn't just happen, we have to make it happen. :-) Think about

it, even on this group with most of our children having the dual dx they are

still very different in so many ways. Even on this list we don't always fit

in, some of our kids are in regular classrooms with support, some are in

self-contained and some have moved on to private placement. Some can talk and

answer questions and take tests and some has only a handful or words and is

still at pre-K skills. A support group should not be limited in what they

support, ex. DS verses DS-Autism but accept them all. I no more want a cookie

cutter support group than I do a cookie cutter IEP. I do not limit myself to

just ds or or even autism support groups because not one group will

meet all the different needs we come across in raising our special needs

children. Even within the groups a person can sometimes feel isolated or a

misfit

because they think different or their child doesn't have the same problems

etc., we tend to drift to the people that are the same and yet sometimes the

very people we think are not going through the same issues as us might be of

more help than we realize and they might even be going through other issues

that we have never had to focus on which might be just as hard for them as the

issues we face are to us. We all have needs and we should all be able to

express those needs regardless of which support group we attend at any given

time. After all support should not be limited to a certain dx but to the needs

of the people involved in raising special needs children. JMHO

Carol

Trishasmom

She isn't typical, She's Trisha!

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

,

I went throught his same thing this past year with our school. However, I had 2

doctors diagnos Jake with Autism including the Kennedy Krieger Autism Center in

Baltimore. On top of that the school did 2 evals of their own in which he

tested Profoundly Autistic and most likely Autistic. They still want to

question whether all his " autistic traits " are from the DS or autism. Like you

said DUH!

I won in the end by mostly stressing the point that Jake is not stupid, he is

very clever and learns through seeing and doing. I wanted him taught more like

an autistic child with pictures sign, etc. I wanted the sensory issues

addressed and also I did NOT want new people who came into his life thinking

that he was profoundly retarded and giving up trying to teach him. I wanted it

stated that his actions were a result of his autism (ignoring people, panicing

in large groups, etc). They did add the PDDNOS to his IEP along with the MR

diagnosisand speech deficits.

Holly

[Guest guest]

The shame of all this arguments is that if the schools would teach our

children as to their needs - all these discussions would be moot. Who cares

what the name is- jusst teaach to the needs. Thus a kid who panics in

crowds, shouldn't be expected to go into large auditoriums or cafeteriaas

without long working pre-teaching. And those with sensory needs would get

the sensory diet that they need.

But we all KNOW THAT - now we need to convince the PROFESSIONALS>

You parents with school age children work so hard to teach the obvious to

the oblivious.

> ,

> I went throught his same thing this past year with our school. However, I

> had 2 doctors diagnos Jake with Autism including the Kennedy Krieger Autism

> Center in Baltimore. On top of that the school did 2 evals of their own in

> which he tested Profoundly Autistic and most likely Autistic. They still

> want to question whether all his " autistic traits " are from the DS or

> autism. Like you said DUH!

>

> I won in the end by mostly stressing the point that Jake is not stupid, he

> is very clever and learns through seeing and doing. I wanted him taught more

> like an autistic child with pictures sign, etc. I wanted the sensory issues

> addressed and also I did NOT want new people who came into his life thinking

> that he was profoundly retarded and giving up trying to teach him. I wanted

> it stated that his actions were a result of his autism (ignoring people,

> panicing in large groups, etc). They did add the PDDNOS to his IEP along

> with the MR diagnosisand speech deficits.

>

> Holly

>

>

>

[Guest guest]

I have told our professionals...put a paper bag over Tori's head (not for real-I

hope you all know that!) and watch the behaviors. If they don't see the DS,

they can definitely SEE the Autism.

Liz

[Guest guest]

Group all of our kids in a room full of kids with DS and see who stands out from

the typical DS diagnosis!

Group all of our kids in a room full of kids with Autism and the only thing that

stands out are their DS characteristics.

Liz

[Guest guest]

I had trouble when I first joined our local ASA chapter because Tori was

different from the other kids. We really didn't fit in. But the group now

comes to me because I live in 2 worlds and they have found I know more about the

Autism and services than they ever did because of my history of constant

research from the day Tori was born.

We can all become the best advocates for all kids with Autism. We are here and

we fight for our kids.

Liz

[Guest guest]

It is so strange not fitting in anywhere. I'm involved with our local

DS group, but it really pains me to be around those kids because they

are almost all doing so much better than Kayla. I feel like I have a

whole different set of challenges that they just don't get. Man, it

seems like DS alone is easy!

I haven't gotten involved with the local autism groups yet, even though

autism affects Kayla way more than the DS does.

Ecki

Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

http://oppositekids.blogspot.com/

>

> I had trouble when I first joined our local ASA chapter because Tori

was different from the other kids. We really didn't fit in. But the

group now comes to me because I live in 2 worlds and they have found I

know more about the Autism and services than they ever did because of

my history of constant research from the day Tori was born.

>

> We can all become the best advocates for all kids with Autism. We

are here and we fight for our kids.

>

> Liz

>

>

[Guest guest]

Ecki: My thing was, once Tori was diagnosed, the Autism became her primary dx.

We feel that the DS is more medical and the Autism is what is really

interferring with he daily life. I suggest everyone get involved with their

local ASA chapter and make yourself heard. Our lives are more complicated due

to the fact that we deal with both the DS and the Autism. I am promoting

awareness of the dual dx within our ASA chapter as well as in my Ds center.

Remember 10% of kids with Ds are Autistic, it's just many are not diagnosed.

Liz

[Guest guest]

Ecki and ,

Thank you for your candor regarding the struggles that all of us have when we

are faced with the differences of our children vs. those children who have DS

alone. I think that we try to be as positive as possible, and celebrate each

accomplishment of our child, but sometimes it is very hard when we see how other

children can do things that ours can't do. It's just human to have these

feelings- any parent would have the same reaction if they were in our shoes.

I am so amazed and blessed by the tenacity and courage of the members of this

list serve and how all of us continue to " fight the good fight " despite the

tremendous daily challenges. It's true that most folks couldn't or wouldn't want

to be in our situation- yet, they do not know our precious children and how they

are so worth every opportunity to help them realize their full potential.

Therefore, I believe that it is no coincidence that we have the children that we

have- we are the perfect parents for them, despite our own shortcomings.

I also hope that local dual diagnosis support groups will be available in the

near future- it would be great to meet other folks in our situation face to face

on a regular basis. In the meantime, thank goodness for this group!! The wisdom

and support from the members has both validated my concerns and given me

strength to run the race, especially on certain occasions when I didn't think I

could go one more step.

Sending support and wishing all of us abundant blessings in our daily journey,

Mom to , 4 yrs.old

DS/PDD-NOS

To: @...: keith9164@...: Sun, 27 Jan 2008

11:25:42 -0500Subject: Re: Re: Newly diagnosed

Ecki,I am so with you on this one. I have struggled with for a long time and

have not joined any of the autism groups yet, but am hoping to get a jump on

this this year. I do wish there were local support groups for kids that have

both diagnosis. I live in North Carolina and whenever I have attended DS support

meetings(which I consequently was in charge of for a few years) I remember

feeling very sad and like what am I doing wrong, what do they know that I don't.

I just got a call in between writing and it was from a Mom who has a typical DS

child who attends the same school as my daughter only she is in a regular

classroom with a one on one. My daughter is in the Autistic classroom with one

on one I did not even ask for so I feel blessed in so many ways to have her in

her base school, with good teachers, assistants and a place where she is

accepted, but when I got the call, the Mom was asking if we wanted tickets to

see her daughter perform in a ballet recital today. I can't go since we have

church at 1:00 but a part of me could not help but feel a little envious that

her child can do this. That getting a place and a person to work one one one

with her child was easy, she did not have to struggle to get anything. She said

I want my daughter to go to school here , I want my daughter to dance here etc.

I have always had to struggle and fight for everything and persist and take

steps back and forth to get anything for my daughter. All that being said, I

still feel grateful for has been given and done for my daughter this year. We

have gone from darkness to light this year.The peace I have felt has been the

biggest blessing I could ever ask for.I do keep hope alive though that we will

be able to find a support group that we will fit into on a local level one day.

We are not alone I'm sure but in the meantime I have you all.

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489[Non-text

portions of this message have been removed]

[Guest guest]

Sara,

One of the many things that makes me crazy is to think that schools keep a child

with particular diagnosis just because of funding issues. It is as " if they

give the Autism on the IEP, they will HAVE to provide, XYZ " When like you

said...In reality, they should be providing XYZ because the child needs it

period! It is such a battle.

Holly