Re: long story - talking to someone about Autism

[Guest guest]

Wow Georga.

I'm struck by how many of us were brushed off or

treated badly by the so-called experts. We should

write a book. Put all of our stories together. We

could call it " The Autism Experience " or something

like that. And it would be required reading for all

health care students and professionals.

(((Georga)))

Tuna

=====

You can learn many things from children.

How much patience you have, for instance.

- lin P.

______________________________________________________________________

Post your free ad now! http://personals.yahoo.ca

[Guest guest]

You can add mine too-- was dx when he was 2. When he was 4 he was dxed

with siezure disorder. Then at 6 1/2 he was spoted with scoliosis. We had

a ped doctor here in the city that told me that was not autistic and he

does not have seizure disorder. So I question his judgement and asked him if

he was telling me that Sick Kids Hospital in Toronto was wrong about

everything.

Then I told him to shove his practice up his ass and I would be reporting

him to the medical association.

Which I did but like they said it would be his word against mine and nothing

would come of it. So I did nothing because I could never afford a lawyer to

fight it.

Lori

-- Re: long story - talking to someone about Autism

you can add my story - my family doctor told me " you are paranoid, you read

too many books. you'll ruin your kid's life looking for something to be

wrong with him. " that was at rowan's 18 month check up. six months later we

started actively seeking a diagnosis. turns out i wasn't so paranoid

afterall. if only that were the case :'o(

michelle mg

[Guest guest]

I agree!!

We should send a copy to each and every " professional " that brushed us all off

with a note remember us!!

I have been thinking the same thing reading this thread, as far as how similar

peoples stories are. I just can't believe it.

I saw our GP last week and she said to give him a label would be disastrous and

I said not too if it is warranted would not get him what he needs either. So

what do you do???

Jen

[Guest guest]

I agree!!

We should send a copy to each and every " professional " that brushed us all off

with a note remember us!!

I have been thinking the same thing reading this thread, as far as how similar

peoples stories are. I just can't believe it.

I saw our GP last week and she said to give him a label would be disastrous and

I said not too if it is warranted would not get him what he needs either. So

what do you do???

Jen

[Guest guest]

you can add my story - my family doctor told me " you are paranoid, you read too

many books. you'll ruin your kid's life looking for something to be wrong with

him. " that was at rowan's 18 month check up. six months later we started

actively seeking a diagnosis. turns out i wasn't so paranoid afterall. if only

that were the case :'o(

michelle mg

[Guest guest]

you can add my story - my family doctor told me " you are paranoid, you read too

many books. you'll ruin your kid's life looking for something to be wrong with

him. " that was at rowan's 18 month check up. six months later we started

actively seeking a diagnosis. turns out i wasn't so paranoid afterall. if only

that were the case :'o(

michelle mg

[Guest guest]

In a message dated 1/5/03 10:19:12 PM Eastern Standard Time,

michellemg69@... writes:

> you'll ruin your kid's life looking for something to be wrong with him. "

Yea we wanted all the pity that comes with the diagnois, yea right. (insert

sarcasm here) I was surprised after the dx by how long it took my Mom and my

husband to come to terms with it. My Mom was and still is the worst. Every

decision is second guessed and talked down. Why are you doing this? Do you

really need all these people? Oh lets go shopping and then we'll " do a

little ABA, " - or of course my personal favorite - " Do you really need a

therapist? You have ME to talk to. " Yea I wanted to dx just for all the

support and understanding.

[Guest guest]

In a message dated 1/5/03 10:19:12 PM Eastern Standard Time,

michellemg69@... writes:

> you'll ruin your kid's life looking for something to be wrong with him. "

Yea we wanted all the pity that comes with the diagnois, yea right. (insert

sarcasm here) I was surprised after the dx by how long it took my Mom and my

husband to come to terms with it. My Mom was and still is the worst. Every

decision is second guessed and talked down. Why are you doing this? Do you

really need all these people? Oh lets go shopping and then we'll " do a

little ABA, " - or of course my personal favorite - " Do you really need a

therapist? You have ME to talk to. " Yea I wanted to dx just for all the

support and understanding.

[Guest guest]

In a message dated 1/5/03 10:19:12 PM Eastern Standard Time,

michellemg69@... writes:

> you'll ruin your kid's life looking for something to be wrong with him. "

Yea we wanted all the pity that comes with the diagnois, yea right. (insert

sarcasm here) I was surprised after the dx by how long it took my Mom and my

husband to come to terms with it. My Mom was and still is the worst. Every

decision is second guessed and talked down. Why are you doing this? Do you

really need all these people? Oh lets go shopping and then we'll " do a

little ABA, " - or of course my personal favorite - " Do you really need a

therapist? You have ME to talk to. " Yea I wanted to dx just for all the

support and understanding.

[Guest guest]

Hi Jen!

I'd still go for the diagnosis. It would give you the answers of what

you're dealing with, explain his behaviors, provide you with something

definite to research to get your best options to help him, provide you with

something concrete for family members to help them understand the things he

does, and open the door for any future services he may need.

But hey, that's what I'd do. :-)

Sue

[Guest guest]

> I saw our GP last week and she said to give him a label would be

> disastrous and I said not too if it is warranted would not get

> him what he needs either. So what do you do???

Well, every situation is different, but in our case, without a dx

would not be getting any special help at all, and THAT would be disastrous.

He desperately needs it. I honestly cannot imagine what hell our life would

be now if we hadn't had him dx'd. The self-injury, the sleep disturbances,

the lack of ability to communicate...It's hard enough when we HAVE the label

to make people understand what he needs. Without it we would be utterly

lost.

I do not at all mean to tell you what to do. Your child, and your life

situation, is different from mine. All I can do is share my own

experiences.

-Sara.

[Guest guest]

> I saw our GP last week and she said to give him a label would be

> disastrous and I said not too if it is warranted would not get

> him what he needs either. So what do you do???

Well, every situation is different, but in our case, without a dx

would not be getting any special help at all, and THAT would be disastrous.

He desperately needs it. I honestly cannot imagine what hell our life would

be now if we hadn't had him dx'd. The self-injury, the sleep disturbances,

the lack of ability to communicate...It's hard enough when we HAVE the label

to make people understand what he needs. Without it we would be utterly

lost.

I do not at all mean to tell you what to do. Your child, and your life

situation, is different from mine. All I can do is share my own

experiences.

-Sara.

[Guest guest]

> I saw our GP last week and she said to give him a label would be

> disastrous and I said not too if it is warranted would not get

> him what he needs either. So what do you do???

Well, every situation is different, but in our case, without a dx

would not be getting any special help at all, and THAT would be disastrous.

He desperately needs it. I honestly cannot imagine what hell our life would

be now if we hadn't had him dx'd. The self-injury, the sleep disturbances,

the lack of ability to communicate...It's hard enough when we HAVE the label

to make people understand what he needs. Without it we would be utterly

lost.

I do not at all mean to tell you what to do. Your child, and your life

situation, is different from mine. All I can do is share my own

experiences.

-Sara.

[Guest guest]

Re: long story - talking to someone about Autism

>

> > you'll ruin your kid's life looking for something to be wrong with him. "

>

> Yea we wanted all the pity that comes with the diagnois, yea right.

(insert

> sarcasm here)

Hey, don't forget my personal favorite from my kids file;

" We need to address mom's need to keep her son young and disabled "

This from a school social worker!!

Sue

[Guest guest]

Re: long story - talking to someone about Autism

>

> > you'll ruin your kid's life looking for something to be wrong with him. "

>

> Yea we wanted all the pity that comes with the diagnois, yea right.

(insert

> sarcasm here)

Hey, don't forget my personal favorite from my kids file;

" We need to address mom's need to keep her son young and disabled "

This from a school social worker!!

Sue

[Guest guest]

In a message dated 1/6/03 3:03:32 PM Eastern Standard Time,

smgaska@... writes:

> " We need to address mom's need to keep her son young and disabled "

so Sue how did they address YOUR problem Did you tell them to get their

heads out of their ______?

Grin ~~~ >

[Guest guest]

In a message dated 1/6/03 3:03:32 PM Eastern Standard Time,

smgaska@... writes:

> " We need to address mom's need to keep her son young and disabled "

so Sue how did they address YOUR problem Did you tell them to get their

heads out of their ______?

Grin ~~~ >

[Guest guest]

In a message dated 1/6/03 3:03:32 PM Eastern Standard Time,

smgaska@... writes:

> " We need to address mom's need to keep her son young and disabled "

so Sue how did they address YOUR problem Did you tell them to get their

heads out of their ______?

Grin ~~~ >

[Guest guest]

> > > you'll ruin your kid's life looking for something to be wrong with

him. "

> >

> > Yea we wanted all the pity that comes with the diagnois, yea right.

> (insert

> > sarcasm here)

>

> Hey, don't forget my personal favorite from my kids file;

> " We need to address mom's need to keep her son young and disabled "

>

> This from a school social worker!!

>

> Sue

ACKKKKK!!!!!!

Sissi who just fainted dead away

[Guest guest]

> > > you'll ruin your kid's life looking for something to be wrong with

him. "

> >

> > Yea we wanted all the pity that comes with the diagnois, yea right.

> (insert

> > sarcasm here)

>

> Hey, don't forget my personal favorite from my kids file;

> " We need to address mom's need to keep her son young and disabled "

>

> This from a school social worker!!

>

> Sue

ACKKKKK!!!!!!

Sissi who just fainted dead away

[Guest guest]

> > > you'll ruin your kid's life looking for something to be wrong with

him. "

> >

> > Yea we wanted all the pity that comes with the diagnois, yea right.

> (insert

> > sarcasm here)

>

> Hey, don't forget my personal favorite from my kids file;

> " We need to address mom's need to keep her son young and disabled "

>

> This from a school social worker!!

>

> Sue

ACKKKKK!!!!!!

Sissi who just fainted dead away

[Guest guest]

<sigh>

Boone was diagnosed during a two hour interview with no testing whatsoever.

I wrote a story about that too.

http://home.isoa.net/~nitetrax/evaluation.htm

Sissi -- who really thinks it's time for a humorous " Putter Tale "

[Guest guest]

<sigh>

Boone was diagnosed during a two hour interview with no testing whatsoever.

I wrote a story about that too.

http://home.isoa.net/~nitetrax/evaluation.htm

Sissi -- who really thinks it's time for a humorous " Putter Tale "

[Guest guest]

<sigh>

Boone was diagnosed during a two hour interview with no testing whatsoever.

I wrote a story about that too.

http://home.isoa.net/~nitetrax/evaluation.htm

Sissi -- who really thinks it's time for a humorous " Putter Tale "

[Guest guest]

Sissi,

That one made me cry. Getting the diagnosis has been the hardest part

of all of this.

Thank you for putting into words what I haven't been able to yet.

Debbie

Re: long story - talking to someone about

Autism

<sigh>

Boone was diagnosed during a two hour interview with no testing

whatsoever.

I wrote a story about that too.

http://home.isoa.net/~nitetrax/evaluation.htm

Sissi -- who really thinks it's time for a humorous " Putter Tale "