Note to other old timers

[Guest guest]

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:}