Re: Note to other old timers

June 21, 2010

Some children in the ASD have parents that do all the right things

and their children still don't get better. Perhaps you should feel

grateful and blessed your children are better. Autism is still a

very difficult medical condition to overcome and if all the right

answers were out there, perhaps all the children would be as

successful as the few that are " normal " or totally indistinguishable

from their peers.

" Ms. Michele "

In a message dated 6/21/2010 9:16:28 A.M. Eastern Daylight Time,

annmaclaren@... writes:

OK, this email is for all the old timers out there. I am usually a lurker

so now I will write:} I am feeling a little jaded these days. I need a vent

session on how utterly frustrating it is when parents want help with their

ASD kids yet they don't want to educate themselves or invest in the time

to learn more :} Like Marsha Hinds, I too have twins going off to college,

driving and doing all the things I never expected after being a " kid " .

I try to spread the word and champion the cause but I have also had to

pull away at times and take a mental holiday because it does become so

frustrating.

I live in Indiana so no local doctors (We see ). I get lots of

inquires about my boys because they are poster children for what can be

achieved with kids on the spectrum. BUT, I have also found most people just

want that superficial " fell good " image but don't want to do anything that

becomes an inconvenience on their part. It amazes me how parents will

continue to do things they aren't satisfied with the results yet do nothing to

change that- not even educate themselves when information is given directly

to them. They also feel it is the school and local doctor's job to fix

their kid. I know ASD students with CFS who are on every sleep/awake drug out

there. The parents acknowledge this but they " fixed " the problem by

manipulating the environment and allowing sleep time. Even knowing my son no

longer

has that problem and even directly giving them Goldberg's website with

CFS they do nothing. They are amazed how well my boys have done 5 years

later after we are "

living proof " . These parents continue to adapt the environment with extra

sleep time and see the same doctor. It is really hard for me to accept an

invitation to speak on autism from these people because it really doesn't

mean anything. Argh!

I also find it interesting that the majority of parents won't travel for

autism treatment yet they will travel to go on a vacation to Disney World or

Cancun. Umm priorities.. As soon as you say a doctor is out of state, the

parent looses interest and comments " Too bad the doctor is out of state, I

would have seen him if he was closer " Umm, would the response be the same

if their child had cancer or HIV and had to go out of state for tx?.So these

parents flounder on the side lines not really happy with their current

neighborhood physician yet very vocal within the school and local autism

support groups on what other people need to do for their kid.

I find it interesting that most support groups shy away from any medical i

ntervention discussion-it's all about services and the school. The cop out

answer is " Every parent needs to make their own choices on what is best

for their child " . I totally agree with that statement within text. When my

kids were younger, I wanted to hear EVERYTHING that was out there so I could

get educated and know quackery from medically sound. Knowledge not

ignorance is the foundation of good choices. It is surprising how many people

really don't know anything about a program or therapy they send their kid off

to. The scarier thing is the person giving a recommendation doesn't have a

good grasp either. Again, people don't want to do their homework. Therapy

and medical intervention has to be " convenient " . OK, you'll have to wait

another generation for that to happen. I know parents who do some medical

intervention that is HARMFUL and they know little about the procedures or

long term effects.

Yet, they have done incredible research regarding IEPsand have a vast

knowledge of what the school and everyone else should be doing for their child.

I wish they put that same enthusiasm and effort into helping their child

medically. Somehow the big picture is missing a few pieces:}

I vacillate between wanting to save every child and tired of beating my

head against the wall. I get renewed energy when I get that phone call or

email from a parent you know has that " spark " and desire to help their child

and will do something. I also email Dr. Goldberg's website to those

searching for more information and willing to offer up my experience. BUT, if

parents don't invest their own time to read and learn to help their own child,

then I am also less inclined to spend time away from my own kids to teach

them because I know it will go nowhere. I don't want to feel the way I do. I

just ache for those kids who will never reach their own fully

potential-whatever that might be. I'll go back to lurking now:}

[Non-text portions of this message have been removed]

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June 21, 2010

I would like to respond to your rant. I am a parent of a " D'd "

autistic child. We investigated only to find out later my son had

Kernicterus- jaundice poisoning.

Parents are overwhelmed, disappointed, detected and confused with this

disease. It is no wonder that they do not 'jump on the band wagon'

Elliott

Sent from my iPhone

On Jun 21, 2010, at 8:15 AM, Ann/ MacLaren

<annmaclaren@...> wrote:

> OK, this email is for all the old timers out there. I am usually a

> lurker so now I will write:} I am feeling a little jaded these days.

> I need a vent session on how utterly frustrating it is when parents

> want help with their ASD kids yet they don't want to educate

> themselves or invest in the time to learn more :} Like Marsha Hinds,

> I too have twins going off to college, driving and doing all the

> things I never expected after being a " kid " . I try to spread

> the word and champion the cause but I have also had to pull away at

> times and take a mental holiday because it does become so frustrating.

>

> I live in Indiana so no local doctors (We see ). I get

> lots of inquires about my boys because they are poster children for

> what can be achieved with kids on the spectrum. BUT, I have also

> found most people just want that superficial " fell good " image but

> don't want to do anything that becomes an inconvenience on their

> part. It amazes me how parents will continue to do things they

> aren't satisfied with the results yet do nothing to change that-

> not even educate themselves when information is given directly to

> them. They also feel it is the school and local doctor's job to fix

> their kid. I know ASD students with CFS who are on every sleep/awake

> drug out there. The parents acknowledge this but they " fixed " the

> problem by manipulating the environment and allowing sleep time.

> Even knowing my son no longer has that problem and even directly

> giving them Goldberg's website with CFS they do nothing. They are

> amazed how well my boys have done 5 years later after we are " living

> proof " . These parents continue to adapt the environment with extra

> sleep time and see the same doctor. It is really hard for me to

> accept an invitation to speak on autism from these people because it

> really doesn't mean anything. Argh!

>

> I also find it interesting that the majority of parents won't travel

> for autism treatment yet they will travel to go on a vacation to

> Disney World or Cancun. Umm priorities.. As soon as you say a doctor

> is out of state, the parent looses interest and comments " Too bad

> the doctor is out of state, I would have seen him if he was closer "

> Umm, would the response be the same if their child had cancer or HIV

> and had to go out of state for tx?.So these parents flounder on the

> side lines not really happy with their current neighborhood

> physician yet very vocal within the school and local autism support

> groups on what other people need to do for their kid.

>

> I find it interesting that most support groups shy away from any

> medical intervention discussion-it's all about services and the

> school. The cop out answer is " Every parent needs to make their own

> choices on what is best for their child " . I totally agree with that

> statement within text. When my kids were younger, I wanted to hear

> EVERYTHING that was out there so I could get educated and know

> quackery from medically sound. Knowledge not ignorance is the

> foundation of good choices. It is surprising how many people really

> don't know anything about a program or therapy they send their kid

> off to. The scarier thing is the person giving a recommendation

> doesn't have a good grasp either. Again, people don't want to do

> their homework. Therapy and medical intervention has to be

> " convenient " . OK, you'll have to wait another generation for that

> to happen. I know parents who do some medical intervention that is

> HARMFUL and they know little about the procedures or long term

> effects. Yet,

> they have done incredible research regarding IEPsand have a vast

> knowledge of what the school and everyone else should be doing for

> their child. I wish they put that same enthusiasm and effort into

> helping their child medically. Somehow the big picture is missing a

> few pieces:}

>

> I vacillate between wanting to save every child and tired of beating

> my head against the wall. I get renewed energy when I get that phone

> call or email from a parent you know has that " spark " and desire to

> help their child and will do something. I also email Dr. Goldberg's

> website to those searching for more information and willing to offer

> up my experience. BUT, if parents don't invest their own time to

> read and learn to help their own child, then I am also less inclined

> to spend time away from my own kids to teach them because I know it

> will go nowhere. I don't want to feel the way I do. I just ache for

> those kids who will never reach their own fully potential-whatever

> that might be. I'll go back to lurking now:}

>

June 21, 2010

I'm not an old timer. In fact, I will be seeing Dr. as soon an

appointment can be scheduled (after lab work next week). However, I do

understand the frustration. I have seen big changes in my child since changing

his diet a year ago. Parents have asked, " Well, isn't that hard? " No, it's not

the easiest thing in the world to change. However, the smile on his face and

the progress I see is worth any " food habits " we have to change. I am so

thrilled that we have found , and I have all the hope in the world that our

family will be the better for it. Our child is the youngest of four, and we

have learned so very much from him. Along this journey, it is nice to see a

light at the end of the tunnel and to hear encouraging stories of triumph. I

know you were venting, but keep on telling parents. There may be another one

like me who has been searching relentlessly. : )

>

> OK, this email is for all the old timers out there. I am usually a lurker so

now I will write:} I am feeling a little jaded these days. I need a vent session

on how utterly frustrating it is when parents want help with their ASD kids yet

they don't want to educate themselves or invest in the time to learn more :}

Like Marsha Hinds, I too have twins going off to college, driving and doing all

the things I never expected after being a " kid " . I try to spread the word

and champion the cause but I have also had to pull away at times and take a

mental holiday because it does become so frustrating.

>

> I live in Indiana so no local doctors (We see ). I get lots of

inquires about my boys because they are poster children for what can be achieved

with kids on the spectrum. BUT, I have also found most people just want that

superficial " fell good " image but don't want to do anything that becomes an

inconvenience on their part. It amazes me how parents will continue to do things

they aren't satisfied with the results yet do nothing to change that- not even

educate themselves when information is given directly to them. They also feel it

is the school and local doctor's job to fix their kid. I know ASD students with

CFS who are on every sleep/awake drug out there. The parents acknowledge this

but they " fixed " the problem by manipulating the environment and allowing sleep

time. Even knowing my son no longer has that problem and even directly giving

them Goldberg's website with CFS they do nothing. They are amazed how well my

boys have done 5 years later after we are " living proof " . These parents continue

to adapt the environment with extra sleep time and see the same doctor. It is

really hard for me to accept an invitation to speak on autism from these people

because it really doesn't mean anything. Argh!

>

> I also find it interesting that the majority of parents won't travel for

autism treatment yet they will travel to go on a vacation to Disney World or

Cancun. Umm priorities.. As soon as you say a doctor is out of state, the parent

looses interest and comments " Too bad the doctor is out of state, I would have

seen him if he was closer " Umm, would the response be the same if their child

had cancer or HIV and had to go out of state for tx?.So these parents flounder

on the side lines not really happy with their current neighborhood physician yet

very vocal within the school and local autism support groups on what other

people need to do for their kid.

>

> I find it interesting that most support groups shy away from any medical

intervention discussion-it's all about services and the school. The cop out

answer is " Every parent needs to make their own choices on what is best for

their child " . I totally agree with that statement within text. When my kids

were younger, I wanted to hear EVERYTHING that was out there so I could get

educated and know quackery from medically sound. Knowledge not ignorance is the

foundation of good choices. It is surprising how many people really don't know

anything about a program or therapy they send their kid off to. The scarier

thing is the person giving a recommendation doesn't have a good grasp either.

Again, people don't want to do their homework. Therapy and medical intervention

has to be " convenient " . OK, you'll have to wait another generation for that to

happen. I know parents who do some medical intervention that is HARMFUL and

they know little about the procedures or long term effects. Yet, they have done

incredible research regarding IEPsand have a vast knowledge of what the school

and everyone else should be doing for their child. I wish they put that same

enthusiasm and effort into helping their child medically. Somehow the big

picture is missing a few pieces:}

>

> I vacillate between wanting to save every child and tired of beating my head

against the wall. I get renewed energy when I get that phone call or email from

a parent you know has that " spark " and desire to help their child and will do

something. I also email Dr. Goldberg's website to those searching for more

information and willing to offer up my experience. BUT, if parents don't invest

their own time to read and learn to help their own child, then I am also less

inclined to spend time away from my own kids to teach them because I know it

will go nowhere. I don't want to feel the way I do. I just ache for those kids

who will never reach their own fully potential-whatever that might be. I'll go

back to lurking now:}

>

June 21, 2010

Hi Ann,

Don't despair! You have a great heart! I know it's hard to share

with other parents, especially if " they know everything " , but

there are a lot more people that are desperate to help their children

and will listen. Just to give you a little update on our son, we

started with Dr. G when he was 4 & 1/2 (after trying DAN without

success), he's now 12... He no longer gets the constant ear infections

(used to be every month!), rarely gets dark circles, stools are

normalized (no longer constipated), we don't use antihistamines or

nose sprays! He just promoted from 5th grade and went through the

whole ceremony without covering his ears, we go to church every sunday

and he sits quietly and listens (we'll he might fall asleep once in a

while), he eats almost anything now, except veggies (went from just

2-3 foods), he is even eating celery with peanut butter now! He has a

" best friend " in school! We don't have any problems, with behaviours,

not even at the dentist! he's very patient and kind. He's about a

year behind academically, but is catching up to peers (our school

district is 2 years ahead of the state standards), so he's doing

well! Our only out-of-school therapy is Private Speech two hours a

week! We still have a lot of work ahead of us, but we have great hope

for his future!

This Friday, we will be leaving for the Dominican Republic and Haiti

for 16 days on a mission trip! He's excited to go and even suggested

that we don't give the kids candy because it's not healthy! He

suggested bananas instead, after we explained he realized that these

kids don't eat candy and it's okay to give them a treat once in a

while, and he felt bad for them! I can still hear the doctor that

diagnosed him telling us that he will never be a normal child, and

might have to be institutionalized, because there is no cure for

Autism!!! We're so blessed to have found Doctor Goldberg, and prove

them WRONG!

I'll go back to lurking as well God bless!

Argie

On Jun 21, 2010, at 6:15 AM, Ann/ MacLaren wrote: