Re: New member Intro

[Guest guest]

Welcome,

I hope you get some good answers soon.. it is so difficult when there are

unanswered questions. My daughter is 14 and has just been diagnosed with the

autism part..altho I knew since she was 3 or 4 that she was diffferent from our

other 3 boys who have Down syn(they are adopted)but more like our first son who

also has autism but a very late diagnosis. With him too, it was really classic,

but know one bothered to tell me!

Brigid

New member Intro

Hi,

This is my first time on this site and I'm already thinking I could

spend the rest of the day reading through all the messages - but

alas, my son Sam's video will finish shortly and so to will my 'time-

out'. My husband and I() live in Auckland, New Zealand and we

have a son who has DS-ASD. He will be four in June and was

diagnosed with Autism at the beginning of last year. At the time,

had I known more about Autism, I could have made the diagnosis myself

alot earlier. I had always had a feeling that Sam just wasn't quite

like his peers that I knew with Down Syndrome. Whenever I queried

some of our ongoing issues with various Therapists, they all assured

me they had dealt with other similar children with Down's (now I'm

thinking all those kids may have also had undiagnosed ASD aswell??).

Sam is non-verbal and does very little to communicate his needs. He

certainly lets us know if he's not happy with something, but like

most parents, we have become very good at anticipating his needs and

following a routine usually keeps him relatively happy. We have many

challenges and issues with Sam, but the two stand-out ones are 'Food

and Eating/Drinking' and 'socialising'.

Sam still eats pureed food and basically eats the same three meals

every day. He is not interested in finger food of any type (tasting,

touching, or holding) and gags or vomits (often on purpose) on the

slightist lump or different food. He only drinks milk from a special

cup with a spout, and still requires us to lie him on a pillow and

hold the cup for him. He also has a protein intolerance to chicken

and egg which just further limits the variety of foods we can offer.

All of these food related issues are further compounded by a constant

battle with his weight.

As far as the social aspect goes, Sam is very loving and affectionate

with myself and my husband and some other familiar adults and is

usually Ok with adults if he's with us, but does not like big groups

of people, particularly (young) children. This can make socialising

with a pre-schooler just about impossible as most of time these are

group situations with lots of kids! Last year I enrolled Sam at a

local preschool for a term and even accompanied him during every

session, but Sam would spend most of the time crying and when he

wasn't crying he was using alot of 'blocking behaviour' or 'stimming'

by constantly rolling a ball or something equally monotonous. This

was such a contrast to what he is like when he's at home or in a

familiar environment that I felt he would be better of at home where

he at least interacts with adults. I now pay a support worker to

come for two hours, twice a week and play with him while I have some

time out. He is usually OK if we have friends with one or two kids

visiting us, but is still very unpredictable - especially at other

peoples places.

I have recently checked out two local schools for children with

special needs, but still feel completely overwhelmed at the prospect

of Sam actually having to go to school when he's five. I really

don't know how he will cope, but I guess I'm not the first parent of

a child with special needs to feel this way. The frustrating thing

with a dual diagnosis is feeling like your child just doesn't really

slot in anywhere.

Apart from all that, we recently had what we thought were 'routine'

xrays done of Sam's knees after noticing a couple of boney bumps

which didn't go away. Two days after the first lot of xray's I was

asked by the hospital to bring Sam back in. I assumed they just maybe

wanted another view or something, but was discovered that the

radiologist had seen something unusual and wanted a full body set of

xray's done. After meeting the radiologist, I was told that he, and

two of the top experts in New Zealand (an American Paediatric

Radiologist and our leading Geneticist) had all looked at the first

set of xray's and have not seen anything like it before. They are

unable to tell us anything more and have sent the xray's to some

expert in America in the hope that he may be able to shed some light

on it. Of course in the meantime all the worst scenarios are going

through our minds and this has just placed an even bigger question

mark over what Sam's future holds. I trying not to dwell on it while

we await more news, however the prospect of getting any sort of

diagnosis looks fairly slim. It seems crazy to think that my son has

something wrong with his bones and is the only person in the world

with this particular problem??

Anyway, it looks as if my time on the net is up for today. I look

forward to reading more of your messages and reminding myself that

there are other people out there going through some of the same

things!

Ciao for now

(Proud mum of Sam)

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

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

starting at 1 & cent;/min.

[Guest guest]

Welcome all new members. It seems like its been pretty busy with alot

of messages going on, nice to read what some are writing on what they

are sharing has me smiling, just to know how they've learn to cope with

many challenging issues which is so therapeutic as many of their post

were not like this in the past, its nice to know we are all not alone

and can relate and together we can learn with various techniques,

strategies, or just to share anything whom could understand where we're

coming from, looking forward reading more, this list has been my

lifeline. Please never hesitate to ask or share anything, you will

receive several messages and its always better reading something than

not having anything to challenge with.

I have a 17 y/o son with the dual dx of AU & DS and what a Blessing it

has been learning from my-cyber family aboard this ship. So welcome

aboard.

Irma,17,DS/ASD

[Guest guest]

welcome amanda!! and sam!! many prayers everything is ok with the bones, new

zealand must do eduacation differently, dont they have that early child

education? Here in iowa anyways, they started comeing to our home when nathan

was 1month old and working with him and training us how to work with him, OT,

PT, and ST, and a teacher came on a weekly basis too, having us work on concepts

etc with him, dont know if it did a great amount of good education wise but

every bit helps, and then when he turned 3years old he was enrooled in our DLC,

(disabled learning center) they continued to work on many of the some things

plus preschool things and it was right next door to a preschool, so he got to

start his integration immediately in preschool. is 14 now, still has to

have certain food groups pureed, eg vegies and some fruits, pastas, and meats

are hard, can eat hambuger mostly only chokes occasionally. Doesnt touch cold

cerals rarely chips, and i have yet to figure out a

salad, lol, still doesnt like big groups of people, but has learn to tolerate

as long as mom or dad is present, eg the public pool took years, but now he is a

fish, lol, he rarely plays with ohters but does like to be included and watch,

especailly with little brother likes to watch him and his friends. YOu are doing

great taking him to be with other kids keep it up!! maybe stay small and add

more and more. well ive yaked long enough, again welcome to the group!! shawna

__________________________________________________

[Guest guest]

In a message dated 6/23/2006 9:35:38 P.M. Eastern Standard Time,

kanosfamily@... writes:

I was also told that

it might be detrimental to have the dual dx because then the teachers,

etc might have lower expectations.

, HOGWASH!!!!! I was told this as well and it's nonsense. If you

don't call a *spade a spade* as they say, how are you going to deal with the

problem!!! The world we live in deems that labels are necessary to receive

certain kinds of services. Stinks, but that's the way it is. Maddie

(12, DS and autism) was dx'd with ASD at 5, even though we literally saw it

happening at 2. Yes, I wish we'd done it earlier, but thankfully, I came to

my senses in time for school to start, and certain programming to be put in

place. If teachers and professionals have lower expectations for our kids

based solely on their dx's, then they're in the wrong business.

BTW, welcome to the group and we look forward to getting to know you and

your family!!!

Donna

[Guest guest]

, Hi am Cyndi, mother of who is 11 yrs old.The Dual

Diagnoisis in early intervention is very important because it

totally makes a difference in the approach of the educators in how

teaching is approached with your child.Sometimes with autism being

the 2 nd dg they will want to switch autism to the 1st

diagnoisis.They kids need longer intervention and more aggressive

intervention than just DS.If you have the medicaid waiver program it

makes a differnce in getting more services.Do you have a medicaid

waiver card? My son would no doubtly be further along if we had had

the dg earlier.You should push for every bit of help now because

these kids benefit from the early intervention.It took my son

breaking his own nose to get the diagnoisis. What area do you live

in? Cyndi

>

> Hi - I am , mom of four children, two of whom have ds. I

suspect

> that my daughter with ds also has asd but she is not diagnosed. I

> would love some input regarding how it would benefit her to have

the

> official dual dx. I have asked at her school and was told that

they

> would still consider the ds primary and would keep her in the same

> class placement (rather than an autism class). I was also told

that

> it might be detrimental to have the dual dx because then the

teachers,

> etc might have lower expectations. She is 5 years old and will be

in

> a segregated special ed preschool/kindergarten class in August.

She

> will be classified as a kindergartner. I am really looking

forward to

> hearing from many of you on this!

>

> Happy to be here,

>

> K

> Florida

>

[Guest guest]

Hi ,

I am Viola Mom to 3 children Tammy is 22, Tania is 19. and is 14 and

has down syndrome and PDD (nos). began with autistic traits at the age of

9, he was dx at the age of 11. I took him to Columbus childrens hospital

where he was dx. It has helped a lot in terms of what services he receives. ie

more speech, more ot., and really concentrating on sensory diet. Welcome to

the group!:

Hi - I am , mom of four children, two of whom have ds. I suspect

that my daughter with ds also has asd but she is not diagnosed. I

would love some input regarding how it would benefit her to have the

official dual dx. I have asked at her school and was told that they

would still consider the ds primary and would keep her in the same

class placement (rather than an autism class). I was also told that

it might be detrimental to have the dual dx because then the teachers,

etc might have lower expectations. She is 5 years old and will be in

a segregated special ed preschool/kindergara segregated special ed

will be classified as a kindergartner. I am really looking forward to

hearing from many of you on this!

Happy to be here,

K

Florida

[Guest guest]

>

> Welcome to the ds/asd list where expectations vary for all our

kids!

Thank you, Sara -

I hadn't thought about how having the dx now might help later if

serious behavioral problems arise.

- K

in FL

[Guest guest]

>

> , Hi am Cyndi, mother of who is 11 yrs old.The Dual

> Diagnoisis in early intervention is very important because it

> totally makes a difference in the approach of the educators in how

> teaching is approached with your child.Sometimes with autism being

> the 2 nd dg they will want to switch autism to the 1st

> diagnoisis.They kids need longer intervention and more aggressive

> intervention than just DS.If you have the medicaid waiver program it

> makes a differnce in getting more services.Do you have a medicaid

> waiver card? My son would no doubtly be further along if we had had

> the dg earlier.You should push for every bit of help now because

> these kids benefit from the early intervention.It took my son

> breaking his own nose to get the diagnoisis. What area do you live

> in? Cyndi

Thanks, Cyndi -

We are in the Tampa Bay, FL area. Here, Early Intervention ends at

age 3 and then they go to developmental preschool at the public school

until Kindergarten age. So Early Intervention is over for my ,

as she will be in K in August. We were recently added to the waiting

list for the Medicaid Waiver in FL, which is at leat 7 years long

right now.

I guess I should try to get the dx now in case it will help her to

have it at some point. I just didn't want to pursue the dx if it

would hold her back somehow.

I'm not even sure how to get the dx! Do I go through the school

psychologist? Our pediatrician doesn't seem to be the one, so I could

ask for a referral to a specialist. What type of specialist do I take

her to?

- K

in FL

[Guest guest]

Hi and welcome. I'm mom to two kids with DS. (12) has DS,

ADHD, and has also been diagnosed as having depression. Isaiah (9) has DS,

ADHD, and mild autism. We got our diagnosis about a year ago and this list has

been very helpful. The doctor that diagnosed both my kids is a Developmental

Pediatrician. As far as having a dual diagnosis helping Isaiah at school,

things haven't changed much. We're having a difficult time getting them to

accept that it's possible. He's in a regular class with an assistant. We got a

new psychologist, so hopefully things will be better for him next year.

Hopefully thing will be btter for you.

Good luck,

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

Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Guest guest]

I've been out of the loop for a while so I thought I would catch up.

I wanted to say that, as a teacher, I agree 100% with Cyndi's post.

Working with a child who has DS is one approach. When a child also

is diagnosed with Autism teachers have to approach the educational

process in a different way. Different issues have to be addressed

when the child is diagnosed withe the dual diagnosis. Doctors tend

to diagnose based on the evident. They don't go further. Let the

doctors know what you want. This goes for educators and staff

handling IEP's as well. If they work with or for your child be very

open with what you expect.

>

> , Hi am Cyndi, mother of who is 11 yrs old.The Dual

> Diagnoisis in early intervention is very important because it

> totally makes a difference in the approach of the educators in how

> teaching is approached with your child.Sometimes with autism being

> the 2 nd dg they will want to switch autism to the 1st

> diagnoisis.They kids need longer intervention and more aggressive

> intervention than just DS.If you have the medicaid waiver program

it

> makes a differnce in getting more services.Do you have a medicaid

> waiver card? My son would no doubtly be further along if we had

had

> the dg earlier.You should push for every bit of help now because

> these kids benefit from the early intervention.It took my son

> breaking his own nose to get the diagnoisis. What area do you live

> in? Cyndi

> >

> > Hi - I am , mom of four children, two of whom have ds. I

> suspect

> > that my daughter with ds also has asd but she is not diagnosed.

I

> > would love some input regarding how it would benefit her to have

> the

> > official dual dx. I have asked at her school and was told that

> they

> > would still consider the ds primary and would keep her in the

same

> > class placement (rather than an autism class). I was also told

> that

> > it might be detrimental to have the dual dx because then the

> teachers,

> > etc might have lower expectations. She is 5 years old and will

be

> in

> > a segregated special ed preschool/kindergarten class in August.

> She

> > will be classified as a kindergartner. I am really looking

> forward to

> > hearing from many of you on this!

> >

> > Happy to be here,

> >

> > K

> > Florida

> >

>

[Guest guest]

Hi ~ Welcome. I am mom to Dylan who turned 11 in May & we just received

the diagnosis in March. I decided to pursue the official diagnosis & am happy I

did. It *seems* so far, to be helping me with school issues we were having. We

took Dylan to a developmental pediatrician for the diagnosis.

Becky

jlkanos wrote:

Hi - I am , mom of four children, two of whom have ds. I suspect

that my daughter with ds also has asd but she is not diagnosed. I

would love some input regarding how it would benefit her to have the

official dual dx. I have asked at her school and was told that they

would still consider the ds primary and would keep her in the same

class placement (rather than an autism class). I was also told that

it might be detrimental to have the dual dx because then the teachers,

etc might have lower expectations. She is 5 years old and will be in

a segregated special ed preschool/kindergarten class in August. She

will be classified as a kindergartner. I am really looking forward to

hearing from many of you on this!

Happy to be here,

K

Florida

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

Want to be your own boss? Learn how on Yahoo! Small Business.

[Guest guest]

Hi ,

You may want to consider an evaluation from your local neurodevelopmental

pediatrician as well as a second opinion. Our second opinion lead us to the

Kennedy Krieger Institute in Baltimore, MD. Dr. Capone is the

Director of the Down Syndrome Clinic and has a special interest and

experience in dual diagnosis. The telephone # is :. We had to

wait a few months for the appointment, but it was well worth it. Also,

should you decide to go to MD, bring a tape recorder with you ( we asked the

Dr. prior to the appt. if it was OK) and record your 2 hour session. I'm so

glad that we did and still refer to it from time to time. There's too much

info. discussed during the consultation to remember everything. Good luck!

Best,

Mom to , 34 mos. DS-PDD/NOS

>

>Reply-To:

>To:

>Subject: Re: New member intro

>Date: Sat, 24 Jun 2006 14:35:34 -0700 (PDT)

>

>Hi ~ Welcome. I am mom to Dylan who turned 11 in May & we just

>received the diagnosis in March. I decided to pursue the official

>diagnosis & am happy I did. It *seems* so far, to be helping me with

>school issues we were having. We took Dylan to a developmental

>pediatrician for the diagnosis.

>

> Becky

>

>jlkanos wrote:

> Hi - I am , mom of four children, two of whom have ds. I

>suspect

>that my daughter with ds also has asd but she is not diagnosed. I

>would love some input regarding how it would benefit her to have the

>official dual dx. I have asked at her school and was told that they

>would still consider the ds primary and would keep her in the same

>class placement (rather than an autism class). I was also told that

>it might be detrimental to have the dual dx because then the teachers,

>etc might have lower expectations. She is 5 years old and will be in

>a segregated special ed preschool/kindergarten class in August. She

>will be classified as a kindergartner. I am really looking forward to

>hearing from many of you on this!

>

>Happy to be here,

>

> K

>Florida

>

>

>

>

>

>

>---------------------------------

>Want to be your own boss? Learn how on Yahoo! Small Business.

>

>

[Guest guest]

,

I am mom to Jake, 7 DS PDD and I can honestly say that having the dual diagnosis

has helped us a lot. Jake is in a life skills all day program at our local

school. He is considered all day kindergarten. We were also able to get him

into a new program called " The Amazing Kids Club " which he would not have been

able to be in with out the PDD diagnosis. I find that having the dual diagnosis

helps in explaining some of his issues and the educational side of PDD is very

different from just a DS standpoint. They have to put them in the best

placement, not just automatically in an AI class no matter what the diagnosis.

We have Jake with kids who have all kinds of other disabilities at school since

he likes to mimic and I did not want him to come home with some of the " typical

behaviors " that some kids with ASD have. My best advice is go with your gut and

don't let teaches and therapist tell you what is best for you and your family.

His education situation should not change just because of a diagnosis.

Holly

Re: New member intro

Hi ,

I am Viola Mom to 3 children Tammy is 22, Tania is 19. and is 14 and

has down syndrome and PDD (nos). began with autistic traits at the age of

9, he was dx at the age of 11. I took him to Columbus childrens hospital

where he was dx. It has helped a lot in terms of what services he receives. ie

more speech, more ot., and really concentrating on sensory diet. Welcome to

the group!:

Hi - I am , mom of four children, two of whom have ds. I suspect

that my daughter with ds also has asd but she is not diagnosed. I

would love some input regarding how it would benefit her to have the

official dual dx. I have asked at her school and was told that they

would still consider the ds primary and would keep her in the same

class placement (rather than an autism class). I was also told that

it might be detrimental to have the dual dx because then the teachers,

etc might have lower expectations. She is 5 years old and will be in

a segregated special ed preschool/kindergara segregated special ed

will be classified as a kindergartner. I am really looking forward to

hearing from many of you on this!

Happy to be here,

K

Florida

[Guest guest]

: I would definitely get an official diagnosis.. If your daughter is

Dual, the Autism takes over as the primary dx., and the DS become secondary.

Liz-Mom to Tori 6 y.o.

New member intro

Hi - I am , mom of four children, two of whom have ds. I suspect

that my daughter with ds also has asd but she is not diagnosed. I

would love some input regarding how it would benefit her to have the

official dual dx. I have asked at her school and was told that they

would still consider the ds primary and would keep her in the same

class placement (rather than an autism class). I was also told that

it might be detrimental to have the dual dx because then the teachers,

etc might have lower expectations. She is 5 years old and will be in

a segregated special ed preschool/kindergarten class in August. She

will be classified as a kindergartner. I am really looking forward to

hearing from many of you on this!

Happy to be here,

K

Florida

[Guest guest]

, No I would not use the opinion of the school get a medical

Diagnoisis.I would start with trying to find a local autism support

group and call them to find out where they got their dg.The other

option is to find a genetic specialist, or some neurologist can give

the dg.Pediatrician's are generally not the ones good at dg.You

could ask the pediatrician to recommend a good genetic speicalist,

What about the one who dg your child with DS? The only thing that

will hold your child back is not getting the earlist DG

possible.Have you applied for Supplemental Security Income because

that is another way to get the medical card? Cyndi

>

>

> >

> > , Hi am Cyndi, mother of who is 11 yrs old.The Dual

> > Diagnoisis in early intervention is very important because it

> > totally makes a difference in the approach of the educators in

how

> > teaching is approached with your child.Sometimes with autism

being

> > the 2 nd dg they will want to switch autism to the 1st

> > diagnoisis.They kids need longer intervention and more

aggressive

> > intervention than just DS.If you have the medicaid waiver

program it

> > makes a differnce in getting more services.Do you have a

medicaid

> > waiver card? My son would no doubtly be further along if we had

had

> > the dg earlier.You should push for every bit of help now because

> > these kids benefit from the early intervention.It took my son

> > breaking his own nose to get the diagnoisis. What area do you

live

> > in? Cyndi

>

>

> Thanks, Cyndi -

>

> We are in the Tampa Bay, FL area. Here, Early Intervention ends

at

> age 3 and then they go to developmental preschool at the public

school

> until Kindergarten age. So Early Intervention is over for my

,

> as she will be in K in August. We were recently added to the

waiting

> list for the Medicaid Waiver in FL, which is at leat 7 years long

> right now.

>

> I guess I should try to get the dx now in case it will help her to

> have it at some point. I just didn't want to pursue the dx if it

> would hold her back somehow.

>

> I'm not even sure how to get the dx! Do I go through the school

> psychologist? Our pediatrician doesn't seem to be the one, so I

could

> ask for a referral to a specialist. What type of specialist do I

take

> her to?

>

> - K

> in FL

>

[Guest guest]

I want to say as a parent of a child with autism, I would have been

lost without the guidance of counselors, therapists, and others who

helped me along the way throughout my son's education.Yes, sometimes

they are wrong but for the most part if they are good they know what

they are talking about.Also, a good teacher will not tell a parent

what is best for a family. Speaking as a teacher assistant I can

tell you that we work as a team to find what is best for the child.

Children are the number one priority. Knowing a dual diagnosis

benefits the child because if/when behaviors appear we know that

this could be a sensory or other issue and can try to fix it. I'm

not an expert by any means but I know what services would be made

available to a child with th dual diagnosis as opposed to what is

available to a child who has only DS.I hope this made sense I'm

having a migraine at the moment. Have a good day!

-- In , " Holly Giglio " wrote:

>

> ,

> I am mom to Jake, 7 DS PDD and I can honestly say that having the

dual diagnosis has helped us a lot. Jake is in a life skills all

day program at our local school. He is considered all day

kindergarten. We were also able to get him into a new program

called " The Amazing Kids Club " which he would not have been able to

be in with out the PDD diagnosis. I find that having the dual

diagnosis helps in explaining some of his issues and the educational

side of PDD is very different from just a DS standpoint. They have

to put them in the best placement, not just automatically in an AI

class no matter what the diagnosis. We have Jake with kids who have

all kinds of other disabilities at school since he likes to mimic

and I did not want him to come home with some of the " typical

behaviors " that some kids with ASD have. My best advice is go with

your gut and don't let teaches and therapist tell you what is best

for you and your family. His education situation should not change

just because of a diagnosis.

> Holly

>

> Re: New member intro

>

>

>

> Hi ,

> I am Viola Mom to 3 children Tammy is 22, Tania is 19. and

is 14 and

> has down syndrome and PDD (nos). began with autistic traits

at the age of

> 9, he was dx at the age of 11. I took him to Columbus childrens

hospital

> where he was dx. It has helped a lot in terms of what services

he receives. ie

> more speech, more ot., and really concentrating on sensory diet.

Welcome to

> the group!:

>

> Hi - I am , mom of four children, two of whom have ds. I

suspect

> that my daughter with ds also has asd but she is not diagnosed.

I

> would love some input regarding how it would benefit her to have

the

> official dual dx. I have asked at her school and was told that

they

> would still consider the ds primary and would keep her in the

same

> class placement (rather than an autism class). I was also told

that

> it might be detrimental to have the dual dx because then the

teachers,

> etc might have lower expectations. She is 5 years old and will

be in

> a segregated special ed preschool/kindergara segregated special

ed

> will be classified as a kindergartner. I am really looking

forward to

> hearing from many of you on this!

>

> Happy to be here,

>

> K

> Florida

>

>

[Guest guest]

I just wanted to thank you all for your input regarding whether or not it is

beneficial to have an official asd diagnosis. I have learned so much in a short

few days from your posts. I think I will contact the Dev Ped's office at our

Children's Hospital and go from there. I am also keeping the info regarding Dr

Capone at KKI. My husband asked me how I intend to get our from FL to MD

- she most certainly wouldn't tolerate an airplane - even elevators are out of

the question! This was a good laugh for us - she's too phobic to survive a trip

to be diagnosed! Sweet little thing.

I do appreciate each of you who responded to my inquiry. I'll keep you posted

on our progress.

- K in FL

Re: New member intro

, No I would not use the opinion of the school get a medical

Diagnoisis.I would start with trying to find a local autism support

group and call them to find out where they got their dg.The other

option is to find a genetic specialist, or some neurologist can give

the dg.Pediatrician's are generally not the ones good at dg.You

could ask the pediatrician to recommend a good genetic speicalist,

What about the one who dg your child with DS? The only thing that

will hold your child back is not getting the earlist DG

possible.Have you applied for Supplemental Security Income because

that is another way to get the medical card? Cyndi

>

>

> >

> > , Hi am Cyndi, mother of who is 11 yrs old.The Dual

> > Diagnoisis in early intervention is very important because it

> > totally makes a difference in the approach of the educators in

how

> > teaching is approached with your child.Sometimes with autism

being

> > the 2 nd dg they will want to switch autism to the 1st

> > diagnoisis.They kids need longer intervention and more

aggressive

> > intervention than just DS.If you have the medicaid waiver

program it

> > makes a differnce in getting more services.Do you have a

medicaid

> > waiver card? My son would no doubtly be further along if we had

had

> > the dg earlier.You should push for every bit of help now because

> > these kids benefit from the early intervention.It took my son

> > breaking his own nose to get the diagnoisis. What area do you

live

> > in? Cyndi

>

>

> Thanks, Cyndi -

>

> We are in the Tampa Bay, FL area. Here, Early Intervention ends

at

> age 3 and then they go to developmental preschool at the public

school

> until Kindergarten age. So Early Intervention is over for my

,

> as she will be in K in August. We were recently added to the

waiting

> list for the Medicaid Waiver in FL, which is at leat 7 years long

> right now.

>

> I guess I should try to get the dx now in case it will help her to

> have it at some point. I just didn't want to pursue the dx if it

> would hold her back somehow.

>

> I'm not even sure how to get the dx! Do I go through the school

> psychologist? Our pediatrician doesn't seem to be the one, so I

could

> ask for a referral to a specialist. What type of specialist do I

take

> her to?

>

> - K

> in FL

>

[Guest guest]

: Dr. Capone is wonderful. We saw him last year for an eval. We live in

Pa. but our insurance won't cover the cost. We have to lay the money out first.

So what we did was see Dr. C last year and now we have both he and Tori's Dev.

Ped in cahoots as to how to treat her. He is wonderful and would give you the

best info. Her Dev. Ped keeps track of her, and we go to Dr. C if we get stuck.

He gets updated on a bi-monthly basis on how we are doing.

Liz-Mom to Tori

Re: New member intro

, No I would not use the opinion of the school get a medical

Diagnoisis.I would start with trying to find a local autism support

group and call them to find out where they got their dg.The other

option is to find a genetic specialist, or some neurologist can give

the dg.Pediatrician's are generally not the ones good at dg.You

could ask the pediatrician to recommend a good genetic speicalist,

What about the one who dg your child with DS? The only thing that

will hold your child back is not getting the earlist DG

possible.Have you applied for Supplemental Security Income because

that is another way to get the medical card? Cyndi

>

>

> >

> > , Hi am Cyndi, mother of who is 11 yrs old.The Dual

> > Diagnoisis in early intervention is very important because it

> > totally makes a difference in the approach of the educators in

how

> > teaching is approached with your child.Sometimes with autism

being

> > the 2 nd dg they will want to switch autism to the 1st

> > diagnoisis.They kids need longer intervention and more

aggressive

> > intervention than just DS.If you have the medicaid waiver

program it

> > makes a differnce in getting more services.Do you have a

medicaid

> > waiver card? My son would no doubtly be further along if we had

had

> > the dg earlier.You should push for every bit of help now because

> > these kids benefit from the early intervention.It took my son

> > breaking his own nose to get the diagnoisis. What area do you

live

> > in? Cyndi

>

>

> Thanks, Cyndi -

>

> We are in the Tampa Bay, FL area. Here, Early Intervention ends

at

> age 3 and then they go to developmental preschool at the public

school

> until Kindergarten age. So Early Intervention is over for my

,

> as she will be in K in August. We were recently added to the

waiting

> list for the Medicaid Waiver in FL, which is at leat 7 years long

> right now.

>

> I guess I should try to get the dx now in case it will help her to

> have it at some point. I just didn't want to pursue the dx if it

> would hold her back somehow.

>

> I'm not even sure how to get the dx! Do I go through the school

> psychologist? Our pediatrician doesn't seem to be the one, so I

could

> ask for a referral to a specialist. What type of specialist do I

take

> her to?

>

> - K

> in FL

>

[Guest guest]

I do not know what school district " Indyred " is serving as a teaching

assistant, but this is a rare place!1

I have had spec ed senior officials DEMAND that I medicate my child, come to

school to change him, deny that a kid with DS can also have ASD, refuse to

honor a dx given by a reputable child development clinic, and then blame his

out of control behaviors on the parent.

So when you speak of people who welcome and work together with parents, I am

afraid that is much less than the average - altho I do hold hope that people

can learn to work together for the common good.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To:

>Subject: Re: New member intro

>Date: Mon, 26 Jun 2006 23:21:17 -0000

>

>I want to say as a parent of a child with autism, I would have been

>lost without the guidance of counselors, therapists, and others who

>helped me along the way throughout my son's education.Yes, sometimes

>they are wrong but for the most part if they are good they know what

>they are talking about.Also, a good teacher will not tell a parent

>what is best for a family. Speaking as a teacher assistant I can

>tell you that we work as a team to find what is best for the child.

>Children are the number one priority. Knowing a dual diagnosis

>benefits the child because if/when behaviors appear we know that

>this could be a sensory or other issue and can try to fix it. I'm

>not an expert by any means but I know what services would be made

>available to a child with th dual diagnosis as opposed to what is

>available to a child who has only DS.I hope this made sense I'm

>having a migraine at the moment. Have a good day!

>

>-- In , " Holly Giglio " wrote:

> >

> > ,

> > I am mom to Jake, 7 DS PDD and I can honestly say that having the

>dual diagnosis has helped us a lot. Jake is in a life skills all

>day program at our local school. He is considered all day

>kindergarten. We were also able to get him into a new program

>called " The Amazing Kids Club " which he would not have been able to

>be in with out the PDD diagnosis. I find that having the dual

>diagnosis helps in explaining some of his issues and the educational

>side of PDD is very different from just a DS standpoint. They have

>to put them in the best placement, not just automatically in an AI

>class no matter what the diagnosis. We have Jake with kids who have

>all kinds of other disabilities at school since he likes to mimic

>and I did not want him to come home with some of the " typical

>behaviors " that some kids with ASD have. My best advice is go with

>your gut and don't let teaches and therapist tell you what is best

>for you and your family. His education situation should not change

>just because of a diagnosis.

> > Holly

> >

> > Re: New member intro

> >

> >

> >

> > Hi ,

> > I am Viola Mom to 3 children Tammy is 22, Tania is 19. and

>is 14 and

> > has down syndrome and PDD (nos). began with autistic traits

>at the age of

> > 9, he was dx at the age of 11. I took him to Columbus childrens

>hospital

> > where he was dx. It has helped a lot in terms of what services

>he receives. ie

> > more speech, more ot., and really concentrating on sensory diet.

>Welcome to

> > the group!:

> >

> > Hi - I am , mom of four children, two of whom have ds. I

>suspect

> > that my daughter with ds also has asd but she is not diagnosed.

>I

> > would love some input regarding how it would benefit her to have

>the

> > official dual dx. I have asked at her school and was told that

>they

> > would still consider the ds primary and would keep her in the

>same

> > class placement (rather than an autism class). I was also told

>that

> > it might be detrimental to have the dual dx because then the

>teachers,

> > etc might have lower expectations. She is 5 years old and will

>be in

> > a segregated special ed preschool/kindergara segregated special

>ed

> > will be classified as a kindergartner. I am really looking

>forward to

> > hearing from many of you on this!

> >

> > Happy to be here,

> >

> > K

> > Florida

> >

> >