New to this group

[Guest guest]

Nothing like a know-it-all therapist, is there?

I guess the best thing to do is get a new therapist or try educating the one

you have already. I'm sure neither option will be easy to do.

Welcome to the list.

Sissi

New to this group

> Hi,

>

> My name is Suzzanne and my 3-year-old daughter has just been

> diagnosed with autism. We have felt that something like this was a

> strong probability, since we have been dealing with her behaviours

> for a long time. She is very bright, but her behaviours get in the

> way of her daily life.

>

> I have tried to educate myself on autism and what might help Molly.

> There are so many different opinions, treatments, methods. She was

> diagnosed by three different doctors. When I told her OT at Easter

> Seals about her diagnosis, she let me know that she did not agree

> with the doctors. And of course, Molly rarely demonstrates rages,

> etc. during therapy because she is allowed to do whatever she wants

> and the therapist tries to incorporate therapy into what Molly wants

> to do. Well, guess what folks....... I cannot let Molly do whatever

> she wants to do, when she wants to do or not do something....... at

> home.

>

> Now I feel awkward at therapy since I know the therapist does not

> agree with the three doctors. I know that having been diagnosed,

> Molly has some issues that are specific to autism and that should be

> a tool for the therapist to help her zero in on Molly's unique

> needs.

>

> Well, I am confused, a bit frustrated and ready to hear your

> suggestions and add a word in wherever I can.

> I am glad to have found this group.

>

> Suzzanne, Mom to Molly, 3 yrs.

>

>

>

>

>

>

>

>

[Guest guest]

Suzzanne ~

Welcome , I unfortunately do not have any good advice as far as how

to deal with the therapists disbelief other than an OT isn't

qualified to make a diagnosis, so why an OT thinks the are able to

question when a qualified person makes a diagnosis is beyond me. But

hang in there this is a great list:)

Amy mom to

Noah 6 Lucas 8 ASD's

[Guest guest]

welcome suzzanne!

my name is michelle and i live with my husband paul, and two sons sebastian and

rowan in northern ontario. sebastian is 10 (11 in a couple of weeks) and rowan

is 6 years old today! he recieved his autism diagnosis in february of 1999.

i am curious about molly's OT. obviously molly has demonstrated some

difficulties in order to qualify her for occupational therapy services. i am

just wondering what the OT thinks is a more suitable diagnosis for molly if not

autism. i can understand why this would make you uncomfortable. do you think

molly has an accurate diagnosis? if so, you may have to become abit more

assertive with this OT to recieve the help you feel molly requires. just my

humble opinion!

i think you picked a good group - i am sure you'll love it here! by the way

sebastian may have been a molly if it weren't for the fact he was born a boy! i

love that name!

michelle

New to this group

Hi,

My name is Suzzanne and my 3-year-old daughter has just been

diagnosed with autism. We have felt that something like this was a

strong probability, since we have been dealing with her behaviours

for a long time. She is very bright, but her behaviours get in the

way of her daily life.

I have tried to educate myself on autism and what might help Molly.

There are so many different opinions, treatments, methods. She was

diagnosed by three different doctors. When I told her OT at Easter

Seals about her diagnosis, she let me know that she did not agree

with the doctors. And of course, Molly rarely demonstrates rages,

etc. during therapy because she is allowed to do whatever she wants

and the therapist tries to incorporate therapy into what Molly wants

to do. Well, guess what folks....... I cannot let Molly do whatever

she wants to do, when she wants to do or not do something....... at

home.

Now I feel awkward at therapy since I know the therapist does not

agree with the three doctors. I know that having been diagnosed,

Molly has some issues that are specific to autism and that should be

a tool for the therapist to help her zero in on Molly's unique

needs.

Well, I am confused, a bit frustrated and ready to hear your

suggestions and add a word in wherever I can.

I am glad to have found this group.

Suzzanne, Mom to Molly, 3 yrs.

[Guest guest]

Hi Suzzanne & Molly,

You've just joined a very supportive, inspiring, and comforting group.

There are a number of " newbies " here with just-diagnosed 3 yearolds.

I'm one of them. I'm Karin, Mom to Jake (Jakob) who was diagnosed last

month and starts school next month.

Nice to meet you,

~ Karin

ebnsuzi wrote:

> Hi,

>

> My name is Suzzanne and my 3-year-old daughter has just been

> diagnosed with autism. We have felt that something like this was a

> strong probability, since we have been dealing with her behaviours

> for a long time. She is very bright, but her behaviours get in the

> way of her daily life.

>

> I have tried to educate myself on autism and what might help Molly.

> There are so many different opinions, treatments, methods. She was

> diagnosed by three different doctors. When I told her OT at Easter

> Seals about her diagnosis, she let me know that she did not agree

> with the doctors. And of course, Molly rarely demonstrates rages,

> etc. during therapy because she is allowed to do whatever she wants

> and the therapist tries to incorporate therapy into what Molly wants

> to do. Well, guess what folks....... I cannot let Molly do whatever

> she wants to do, when she wants to do or not do something....... at

> home.

>

> Now I feel awkward at therapy since I know the therapist does not

> agree with the three doctors. I know that having been diagnosed,

> Molly has some issues that are specific to autism and that should be

> a tool for the therapist to help her zero in on Molly's unique

> needs.

>

> Well, I am confused, a bit frustrated and ready to hear your

> suggestions and add a word in wherever I can.

> I am glad to have found this group.

>

> Suzzanne, Mom to Molly, 3 yrs.

>

[Guest guest]

Our speech therapist was the same way. Because really liked her, he

did pretty well with her, and there were no other children around, which is

his weakness. He hides, cries, etc when near other kids. His tantrums are

when we don't let him do one of his " rituals " , which she didn't encounter

much either. Luckily, she was with EI, and we're out of that now, because

he's 3 and with the school district.

Good luck to you, I know how difficult it is.

ellen

PS: You'll love it here! I've only been here a couple weeks, and feel like

I've known these people forever. :-)

New to this group

Hi,

My name is Suzzanne and my 3-year-old daughter has just been

diagnosed with autism. We have felt that something like this was a

strong probability, since we have been dealing with her behaviours

for a long time. She is very bright, but her behaviours get in the

way of her daily life.

I have tried to educate myself on autism and what might help Molly.

There are so many different opinions, treatments, methods. She was

diagnosed by three different doctors. When I told her OT at Easter

Seals about her diagnosis, she let me know that she did not agree

with the doctors. And of course, Molly rarely demonstrates rages,

etc. during therapy because she is allowed to do whatever she wants

and the therapist tries to incorporate therapy into what Molly wants

to do. Well, guess what folks....... I cannot let Molly do whatever

she wants to do, when she wants to do or not do something....... at

home.

Now I feel awkward at therapy since I know the therapist does not

agree with the three doctors. I know that having been diagnosed,

Molly has some issues that are specific to autism and that should be

a tool for the therapist to help her zero in on Molly's unique

needs.

Well, I am confused, a bit frustrated and ready to hear your

suggestions and add a word in wherever I can.

I am glad to have found this group.

Suzzanne, Mom to Molly, 3 yrs.

[Guest guest]

Hi Suzzanne, welcome. I have a 2 year old son, Jordan, who was

diagnosed with autism in July. He has a twin sister, , who is NT

(neurotypical). This group has been such a great place for me. I lurk

a lot, but even reading the other posts gives me comfort that I'm not

alone.

Did Molly's OT say why she didn't agree with the diagnosis? Jordan does

have rages either. He melts down on occasion but he's doesn't do that

typical angry freak out thing. He's also affectionate ... being cold &

unfeeling is another stereotype. Hope you work things out with the OT.

Debbie

[Guest guest]

Hi Suzzanne and welcome to the group! So glad you jumped right in . I'm Ali,

married to Iain, and we have 2 kids. Lyndsey is 7 and Andy will be 5 next month.

Andy has a diagnosis of PDD-NOS, also known as atypical autism. This is a great

group and I'm sure you will love it here !

Ali

[Guest guest]

Hi Suzanne!

Welcome!

Don't put too much stock into whether your OT agrees or disagrees with the

diagnosis. We fought for 4 years to get my 9yr old educationally diagnosed

(he had 3 medical diagnosis' of autism), and we will finally receive it as

soon as the reports are in and we can reconviene his IEP! Anyway, we had an

OT that had worked with our kids since my oldest was 6 months old, and I

found out that after 2 years of fighting for the youngest, she was one of

the ones who disagreed and she was part of the team evaluating him!!! At

least you know up front where this woman stands.

I do have to admit though that you could be right that maybe she could

adjust Molly's services based on her diagnosis though. Is she receiving the

therapy for sensory issues or for motor delays? You also may be able to get

her services through your school district with the diagnosis.

Hope you like it here!

Sue in MI

Mom to: 12 1/2, HFA

9, AS/ADD

IM smgaska1

[Guest guest]

Welcome to the group Suzzanne. I know you'll love it here. My name is Amie. I

have two children. Karson is 3 and PDD and Peyton is 21 months and NT. We live

in Florida. Is it possible to switch therapists? Everyone needs to be on the

same page while working w/ Molly, esp about her behaviors. We all know about

the behaviors here--you are not alone. I look forward to reading your posts.

Amie

New to this group

Hi,

My name is Suzzanne and my 3-year-old daughter has just been

diagnosed with autism. We have felt that something like this was a

strong probability, since we have been dealing with her behaviours

for a long time. She is very bright, but her behaviours get in the

way of her daily life.

I have tried to educate myself on autism and what might help Molly.

There are so many different opinions, treatments, methods. She was

diagnosed by three different doctors. When I told her OT at Easter

Seals about her diagnosis, she let me know that she did not agree

with the doctors. And of course, Molly rarely demonstrates rages,

etc. during therapy because she is allowed to do whatever she wants

and the therapist tries to incorporate therapy into what Molly wants

to do. Well, guess what folks....... I cannot let Molly do whatever

she wants to do, when she wants to do or not do something....... at

home.

Now I feel awkward at therapy since I know the therapist does not

agree with the three doctors. I know that having been diagnosed,

Molly has some issues that are specific to autism and that should be

a tool for the therapist to help her zero in on Molly's unique

needs.

Well, I am confused, a bit frustrated and ready to hear your

suggestions and add a word in wherever I can.

I am glad to have found this group.

Suzzanne, Mom to Molly, 3 yrs.

[Guest guest]

Can anyone enlighten me about " PDD-NOS " and " atypical autism " ? I am so

confused by the PDD label. What is the difference? How can Autism be

atypical? By it's very nature it seems atypical, is there a " typical "

Autism? I'm sorry, I'm just really lost about the PDD thing. I finally

understood that Aspergers is basically Autism but without a speech delay

and with normal or above normal intelligence. Is that right?

~ Karin who just got back from a local Autism Society meeting where

everyone's kids have PDD, not Autism.

Alison Whitehill wrote:

>

> Hi Suzzanne and welcome to the group! So glad you jumped right in . I'm

> Ali, married to Iain, and we have 2 kids. Lyndsey is 7 and Andy will be

> 5 next month. Andy has a diagnosis of PDD-NOS, also known as atypical

> autism. This is a great group and I'm sure you will love it here !

>

> Ali

[Guest guest]

Karin, Andy got the dx aytpical autism because he doesn't meet all the criteria

for a dx of autism. Which parts, I have no idea. Usually I just tell people he's

autistic and if they ask about it then I'll explain in more detail.

Ali

Karin wrote:

Can anyone enlighten me about " PDD-NOS " and " atypical autism " ? I am so

confused by the PDD label. What is the difference? How can Autism be

atypical? By it's very nature it seems atypical, is there a " typical "

Autism? I'm sorry, I'm just really lost about the PDD thing. I finally

understood that Aspergers is basically Autism but without a speech delay

and with normal or above normal intelligence. Is that right?

~ Karin who just got back from a local Autism Society meeting where

everyone's kids have PDD, not Autism.

Alison Whitehill wrote:

>

> Hi Suzzanne and welcome to the group! So glad you jumped right in . I'm

> Ali, married to Iain, and we have 2 kids. Lyndsey is 7 and Andy will be

> 5 next month. Andy has a diagnosis of PDD-NOS, also known as atypical

> autism. This is a great group and I'm sure you will love it here !

>

> Ali

[Guest guest]

Suzzanne:

Welcome to the group. You'll love it here. I am Tina W. (23),

single mom to Mark (will be 3 on Nov. 18). Ask away, I'm sure you'll

find lot's of answers here!

Tina W.

[Guest guest]

Either that or she can go mad with the rest of us. Hee hee.

Hi Suzzanne! I am Georga, I have 7 children (the oldest is 9, the youngest is

almost 2). ...one with a formal DX of high functioning ASD " most likely

Aspergers Syndrome " and three others that we believe to be on the specturm.

Georga

Your purchase of Usborne Books will help the Marine Corps and Toys for Tots.

Please visit www.ubah.com/BF11768

Register to win $50 in free books. Visit www.ubah.com/F1549

Re: New to this group

Suzzanne:

Welcome to the group. You'll love it here. I am Tina W. (23),

single mom to Mark (will be 3 on Nov. 18). Ask away, I'm sure you'll

find lot's of answers here!

Tina W.

[Guest guest]

Hi Suzzanne!

Nice to meet you and Molly.

Welcome to the group.

My first word of advice: The OT works for YOU. Therefore; she needs to

listen to you and work on behaviors that YOU feel you are having issues

with.

You'll always know your daughter best.

Keep asking questions, we're here to help.

Penny

Mom to Jacqui, HFA 7 1/2 (acting like an NT 2 year old lately)

Jeff, 20

New to this group

Hi,

My name is Suzzanne and my 3-year-old daughter has just been

diagnosed with autism. We have felt that something like this was a

strong probability, since we have been dealing with her behaviours

for a long time. She is very bright, but her behaviours get in the

way of her daily life.

[Guest guest]

i don't profess to be an expert on this subject at all but i will share what i

know/think . as far as i understand, ASD or autism spectrum disorder has

replaced the term PDD or pervasive developmental disorder. both are intended to

be umbrella terms which cover a spectrum of diagnosis. at the convention i

attended last week this was a topic touched on by many if not all of the

speakers. apparently ASD is the new preferred universal term. however, some

clinicians are still handing out the older PDD diagnosis, and of course there

are thousands of children out there with a PDD diagnosis from before they tryed

to phase this term out.

the PDD - NOS (not otherwise specified) diagnosis was used to provide a label

for children who did not meet DSM IV criteria for autism but perhaps exhibited

alot of autistic tendencies. this is wher the " atypical " description comes in

because it describes a child who doesn't conform to a classic autistic

diagnostic model. the professionals who i heard from last week said the PDD-NOS

label was a tragic blunder as it was too ambiguos to secure sufficient services

for some children.

yes, you are correct about aspergers children - no language delay and average to

above average IQ. aspergers is largely a social and communicative disorder.

if i am mistaken in any of this please step in and correct away. like i said i

am not an expert.

michelle

Re: New to this group

Can anyone enlighten me about " PDD-NOS " and " atypical autism " ? I am so

confused by the PDD label. What is the difference? How can Autism be

atypical? By it's very nature it seems atypical, is there a " typical "

Autism? I'm sorry, I'm just really lost about the PDD thing. I finally

understood that Aspergers is basically Autism but without a speech delay

and with normal or above normal intelligence. Is that right?

~ Karin who just got back from a local Autism Society meeting where

everyone's kids have PDD, not Autism.

Alison Whitehill wrote:

>

> Hi Suzzanne and welcome to the group! So glad you jumped right in . I'm

> Ali, married to Iain, and we have 2 kids. Lyndsey is 7 and Andy will be

> 5 next month. Andy has a diagnosis of PDD-NOS, also known as atypical

> autism. This is a great group and I'm sure you will love it here !

>

> Ali

[Guest guest]

Autism is a PDD....Pervasive Developmental Disorder....

The NOS in PDD-NOS stands for " Not otherwise specified "

There are a couple of reasons for a PDD or PDD-NOS dx. One, the child does

not meet all of the criteria in the DSM-IV for " Autism " ...Two, some docs do

not like to/will not " label " a child with Autism.

That's the short answer.

Penny

Re: New to this group

Can anyone enlighten me about " PDD-NOS " and " atypical autism " ? I am so

confused by the PDD label. What is the difference? How can Autism be

atypical? By it's very nature it seems atypical, is there a " typical "

Autism? I'm sorry, I'm just really lost about the PDD thing. I finally

understood that Aspergers is basically Autism but without a speech delay

and with normal or above normal intelligence. Is that right?

~ Karin who just got back from a local Autism Society meeting where

everyone's kids have PDD, not Autism.

[Guest guest]

Thank you, this was helpful to my poor little addled brain. :-)

~ Karin

Murdoch-Gibson wrote:

> i don't profess to be an expert on this subject at all but i will share

> what i know/think . as far as i understand, ASD or autism spectrum

> disorder has replaced the term PDD or pervasive developmental disorder.

> both are intended to be umbrella terms which cover a spectrum of

> diagnosis. at the convention i attended last week this was a topic

> touched on by many if not all of the speakers. apparently ASD is the

> new preferred universal term. however, some clinicians are still

> handing out the older PDD diagnosis, and of course there are thousands

> of children out there with a PDD diagnosis from before they tryed to

> phase this term out.

>

> the PDD - NOS (not otherwise specified) diagnosis was used to provide a

> label for children who did not meet DSM IV criteria for autism but

> perhaps exhibited alot of autistic tendencies. this is wher the

> " atypical " description comes in because it describes a child who doesn't

> conform to a classic autistic diagnostic model. the professionals who i

> heard from last week said the PDD-NOS label was a tragic blunder as it

> was too ambiguos to secure sufficient services for some children.

>

> yes, you are correct about aspergers children - no language delay and

> average to above average IQ. aspergers is largely a social and

> communicative disorder.

>

> if i am mistaken in any of this please step in and correct away. like i

> said i am not an expert.

> michelle

[Guest guest]

Yeah, the more the merrier.... :-S

Re: Re: New to this group

Either that or she can go mad with the rest of us. Hee hee.

[Guest guest]

glad i could help! you seem to have a perfectly good brain from where i am

sitting ;o)

michelle

Re: New to this group

Thank you, this was helpful to my poor little addled brain. :-)

~ Karin

Murdoch-Gibson wrote:

> i don't profess to be an expert on this subject at all but i will share

> what i know/think . as far as i understand, ASD or autism spectrum

> disorder has replaced the term PDD or pervasive developmental disorder.

> both are intended to be umbrella terms which cover a spectrum of

> diagnosis. at the convention i attended last week this was a topic

> touched on by many if not all of the speakers. apparently ASD is the

> new preferred universal term. however, some clinicians are still

> handing out the older PDD diagnosis, and of course there are thousands

> of children out there with a PDD diagnosis from before they tryed to

> phase this term out.

>

> the PDD - NOS (not otherwise specified) diagnosis was used to provide a

> label for children who did not meet DSM IV criteria for autism but

> perhaps exhibited alot of autistic tendencies. this is wher the

> " atypical " description comes in because it describes a child who doesn't

> conform to a classic autistic diagnostic model. the professionals who i

> heard from last week said the PDD-NOS label was a tragic blunder as it

> was too ambiguos to secure sufficient services for some children.

>

> yes, you are correct about aspergers children - no language delay and

> average to above average IQ. aspergers is largely a social and

> communicative disorder.

>

> if i am mistaken in any of this please step in and correct away. like i

> said i am not an expert.

> michelle

[Guest guest]

Hi Suzanne,

My name is , I am in Australia. I have been part of this group for

about a month now and I love it. Like someone else said I just lurk alot as

well and pop up every now and then. But I have to check the posts everyday

as the support you get from these ladies is terrific. Welcome!

I have (NT) almost 5 and almost 2. The pead is 90% sure

is Autistic. I too am experiencing the problems that people do not

believe what the pead has said. (childcare, some family, friends)

can be loving and he holds good eye contact, but, his behaviour is terrible.

His speech is behind but we are seeing improvements, I hope it stays. He is

fine at child care as he to can wander and do as he pleases. How is Molly's

speech? Is that part of the reason the OT has doubts?

Just remember you are her Mum and you know her the best. (That coming from a

Mum that is sick of hearing, Are they sure? He does the same as my little so

& so? He looks alright to me!!!)

Take care,

Jen

[Guest guest]

Hello Suzzanne, welcome!

Your OT is probably making assumptions based on another autistic child she

knows. My son's teacher did this. She assumed was as low-functioning as

this other boy and when she found he wasn't, she completely re-did the program

for him. Maybe you could give your OT some books on autism or refer her to a

couple websites?

Glad you joined us

Tuna

http://www.autism-pdd.net/checklist.html

http://www.nichcy.org/pubs/factshe/fs1txt.htm

*********Get more from the Web. FREE MSN Explorer download :

http://explorer.msn.com

[Guest guest]

Ok. meets all the criteria for autism, but he is considered aspergers

because he didn't lack speech when he was younger and has that little

professor type of speech.

Sue

Re: New to this group

>

>

> Can anyone enlighten me about " PDD-NOS " and " atypical autism " ? I am so

> confused by the PDD label. What is the difference? How can Autism be

> atypical? By it's very nature it seems atypical, is there a " typical "

> Autism? I'm sorry, I'm just really lost about the PDD thing. I finally

> understood that Aspergers is basically Autism but without a speech delay

> and with normal or above normal intelligence. Is that right?

>

> ~ Karin who just got back from a local Autism Society meeting where

> everyone's kids have PDD, not Autism.

>

>

>

> Alison Whitehill wrote:

>

> >

> > Hi Suzzanne and welcome to the group! So glad you jumped right in .

I'm

> > Ali, married to Iain, and we have 2 kids. Lyndsey is 7 and Andy will

be

> > 5 next month. Andy has a diagnosis of PDD-NOS, also known as atypical

> > autism. This is a great group and I'm sure you will love it here !

> >

> > Ali

>

>

>

>

[Guest guest]

High price does not always mean better. I went with Dr. Levin. Dr.

Levin and his staff are just wonderful! I believe you will really

like him.

Tammy

> Hi. I'm new to this group. I have a phone consult scheduled with

Dr.

> Levin Fri. Feb. 14th. I am very anxious about this. Not about the

> procedure but about choosing the right doctor. I live in

Springfield,

> IL and the dr's here charge $10-12,000. Also there's a doctor in

St.

> Louis which is very close to me and his price is about $10,000. Why

> the big range between prices? Does higher price mean better doctor?

> I'm really having a hard time deciding where to go. I would

> appreciate any input. Thanks! Misty

[Guest guest]

Welcome, Misty.. First of all no the higher the price does not mean

the better the MD. Most ladies here prefer Dr. L and have chatted

with him.

This is a wonderful group of ladies and you will find all the love,

support, laughter, tears and a wide range of emotions here.

you are truly among sisters here. Pull up a chair and make yourself

at home.

Oh by the way, I'm usually a big mouth...

Hugs,

PAM

> Hi. I'm new to this group. I have a phone consult scheduled with

Dr.

> Levin Fri. Feb. 14th. I am very anxious about this. Not about the

> procedure but about choosing the right doctor. I live in

Springfield,

> IL and the dr's here charge $10-12,000. Also there's a doctor in

St.

> Louis which is very close to me and his price is about $10,000. Why

> the big range between prices? Does higher price mean better doctor?

> I'm really having a hard time deciding where to go. I would

> appreciate any input. Thanks! Misty

[Guest guest]

Hi, Roxanne - welcome to the group. You'll find that we're a caring,

supportive bunch.

D.