Re: Re: Names and new member intro

[Guest guest]

Hi ,

Welcome, I'm Mimi, married to , for 9 years and

sahm to Hannah, 7 1/2 (NT) and ,

5 1/2 (PDD)..and I'm a felllow Long Islander..we live

in Westbury, in Nassau County.

That great that the school you looked at has a place

for for both summer and fall..the early

intervention really makes a difference.

Sorry to hear that your dh is away.

You will find this list a wonderful source of

friendship and support.

Mimi

--- christine heeren

wrote:

> on 3/28/02 1:06 PM, kdminden2001 at

> kdminden2001@... wrote:

>

> My son, Brandt ph, is adopted....

>

> thanks for your wonderful story. I'm new on the

> list- looking for info,

> insite and support. I just found out a week ago my

> 2 and a half year old

> son may be autistic/pdd. He had his speech and OT

> tested, and i'm in the

> process of calling around trying to get him seen by

> a real doctor to find

> out for sure. The waiting list here at Stony Brook

> University Hospital is 6

> months.

> Does anyone have advice- kinda " if i knew then what

> i know now " sort of

> stuff? I have about 2-3 years experience working

> with autistic kids in

> Virginia- as an aide, therapist and babysitter.

> But, that was 6 years ago,

> and treatments have changed a little bit- and now

> i'm on Long Island.

> So far, we had the three test last week (speech, OT,

> Psych) and the

> evaluation is due next week (the speech and OT

> people said he " definately "

> needs therapy)- i'll be setting up an appt with the

> school system (longwood)

> in April. I looked into a special school here-

> " Just Kids " in Middle

> Island, NY. They have room for the summer and fall.

> I want to have tested for all sort of

> metals, etc-- that's what i

> need to find out. I know I need his lead level

> tests- and what else?

> I'm kinda on my own with this, my husband is

> currently involved in the

> campaign against terrorism and may not be back in

> the states for 3 more

> years. Thanks in advance for your help. Please

> feel free to email me

> personally also-

> I'm excited to read all of your posts and to get to

> know you and your

> wonderful children-

> Heeren, NY

>

> @...

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

on 3/28/02 5:27 PM, Mimi Holl at mommys2rubies@... wrote:

> Sorry to hear that your dh is away.

thanks Mimi

does anyone have a list of shortcuts-

like dh?

and any other terms i need to know

in NY

[Guest guest]

Welcome !

---

=====

Ginger, wife to Jeff

14 ADD

9 Autistic

8 NT

__________________________________________________

[Guest guest]

Welcome . Sorry that your dh is so far away. What sort of info

would you like?

Amy H--in Michigan

Kepler 4 1/2 ASD and Bethany 6 NT

" Harmony breeds ignorance. It is the dissonant chords of life that lead us

to wisdom. " ~me

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

In a message dated 3/29/2002 1:35:28 AM Eastern Standard Time,

@... writes:

1. Do you trust doctors? Yes and No - Regular ones don't know jack and the

ones that diagnoised her didn't say anything but ABA 25 hours a week is the

ONLY thing that will help your child. NOT that I'm bashing ABA we just

haven't tried it and I think everyone will agree that my daughter has made

wonderful progress. We see an DAN (Defeat Autism Now) doctor in Washington

Crossing PA that is also a homopath (herbalist) that has helped my daughter

but was VERY expensive but well worth the money.

2. Do you think autism will ever be cured? Not unless someone famous has a

child with it so that it gets more attention.

3. Does it help to go to those conferences on autism? Educationing yourself

is the

most important thing

4. Should i expect a fight with the schools about his IEP? Probably I have

had no

problems with early intervention though. is still under 3.

5. Did you all have a parents advocate for the IEP? No

6. Was that person helpful? N/A

7. Did you meet with them beforehand?

8. Do you think you know the cause of your child's condition? Yes

9. Are there any dishonest groups out there I should watch out for? Anything

that promises a cure or anything " quick "

> 0. Do you think parents really know best- or are we too close? No one has

> the

motivation that we do we know more than anyone else about our child. All our

kids

are different no one can know but us.

11. Is anyone going to that march in DC next month? not me

12. What tests have you given your child? has been tested for protein,

and

wheat allergies, and she has had metal testing.

13. After having a delayed child, were you worried about having other

children. No

[Guest guest]

on 3/28/02 9:48 PM, Amy Helmuth at ajhelmuth@... wrote:

> Welcome . Sorry that your dh is so far away. What sort of info

> would you like?

that's ok Amy- I know my husband's job is important (navy). He's been gone

over three years- and may not be back with us for good for another three.

At least we don't fight all the time, like some couples. And i get to make

most of the decisions- which can be cool

ok- what info do i want-----????

let's see......

these questions are open to anybody-

1. Do you trust doctors?

2. Do you think autism will ever be cured?

3. Does it help to go to those conferences on autism?

4. Should i expect a fight with the schools about his IEP?

5. Did you all have a parents advocate for the IEP?

6. Was that person helpful?

7. Did you meet with them beforehand?

8. Do you think you know the cause of your child's condition?

9. Are there any dishonest groups out there I should watch out for?

10. Do you think parents really know best- or are we too close?

11. Is anyone going to that march in DC next month?

12. What tests have you given your child?

13. After having a delayed child, were you worried about having other

children?

i'm sure when i get 's eval next week i'll have more questions-

but that's all for now

thanks everyone!

in NY

[Guest guest]

In a message dated 3/29/2002 1:35:28 AM Eastern Standard Time,

@... writes:

> 1. Do you trust doctors? Some of them:) I am actually in " love " with Jare's

> current neuro. I finally found a good one I think:) It took a bit of time,

> but he keeps me sane.

> 2. Do you think autism will ever be cured? I dunno. I think if they get

> gene therapy down there could be a real chance. I don't know if that will

> help the affected or just the future babies, but all my hope lies there.

> 3. Does it help to go to those conferences on autism? I have never attended

> one.

> 4. Should i expect a fight with the schools about his IEP? I haven't had

> any fights until the very last one. The I actually cried because of

> frustration, but eventually it went my way:)

> 5. Did you all have a parents advocate for the IEP? I had one at one time,

> but have no idea what happened to them. Weren't there during the one I

> needed them to be at.

> 6. Was that person helpful? Actually no, so I guess it didn't matter if

> they were at the last one.

> 7. Did you meet with them beforehand? No.

> 8. Do you think you know the cause of your child's condition? No...hehe,

> some other list I was on had me questioning every which way he could have

> been affected, and after numerous tests(gut stuff, mercury

> levels.blah,blah) I still don't know. Jare is 6 now, so I no longer really

> care how.

>

> 9. Are there any dishonest groups out there I should watch out for? All

> " and then they will wake up normal " groups endorsing those quick " cures "

> 10. Do you think parents really know best- or are we too close? I don't

> know about others, but same as my NT kids, I know best for mine:)

> 11. Is anyone going to that march in DC next month? No. hehe, well I'm sure

> someone is, not just me.

> 12. What tests have you given your child? protein, wheat, lead, mercury and

> whatever metals I obsessed about, EEG's and mri's.

> 13. After having a delayed child, were you worried about having other

> children?

> I wasn't worried about having more children, just more alert to all the

milestones in the other one after Jare. My Seb(5) has a lot of

characteristics of autism (hand-flapping, toy lining up,) but he's not, it's

just that to him Jare is typical and he looks up to his big bro:)

[Guest guest]

> 1. Do you trust doctors?

no. no no no no no.

> 2. Do you think autism will ever be cured?

On this list, we don't usually talk about that. But personally, I think -

no.

> 3. Does it help to go to those conferences on autism?

Going to one soon -- I think it will help!

> 4. Should i expect a fight with the schools about his IEP?

Generally this is the case, but you could get lucky. It happens.

> 5. Did you all have a parents advocate for the IEP?

Mine was at my last meeting. She was just as intimidated by the school as I

was.

6. Was that person helpful?

Not at the meeting, nope.

7. Did you meet with them beforehand?

yep - and she was helpful there! Helped me getr my thoughts organized.

> 8. Do you think you know the cause of your child's condition?

Again, we don't usually talk about this, but -- for my son, genetics.

> 10. Do you think parents really know best- or are we too close?

We know best. We are the only ones who know our children. In some cases,

we knew for years that there was something wrong, before the doctors finally

agreed.

> 13. After having a delayed child, were you worried about having other

> children?

Yes. I won't have another. Aside from the possibility of another ASD

child, there are other factors to consider. I just won't risk it.

Jacquie

[Guest guest]

-

Welcome to the list!!!

My advice to you is to follow your instincts...You know your child better

than ANYONE. If it feels right to you, if probably is...If it doesn't, it

probably isn't.

Don't let the so-called professionals call all the shots. I know that

sounds a bit cynical, but no one knows Autism like a parent who lives with

it. It sounds like you've had some experience with Autistic children also,

which is a plus.

Our kids are " kids " first, and then Autistic. They are individuals and what

works for one may now work for another.

Sorry to hear your husband is away...We'll help you anyway we can.

Penny

Mom to Jacqui, 7 HFA

Jeff, 19

[Guest guest]

> I am pregnant right now after having both Greggory and Alec dx'd

> autistic and Alec also BP and ADHD. We are concerned but decided we

> were willing to take the risk.

Jacquie:

I don't recall when you are due, but it must be fairly soon? Another month

or two or am I remembering wrong?

Salli

[Guest guest]

>

>

>1. Do you trust doctors?

I trust Kep's doc, but he is very good and very knowledgable about autism.

I trust him but I do still question him. I've found through Kep's dx, that

doctor's really don't always know what is best for your child. I always,

always do my own research before we start anything new.

>2. Do you think autism will ever be cured?

Not in Kep's lifetime.

>3. Does it help to go to those conferences on autism?

Any kind of education is good!

>4. Should i expect a fight with the schools about his IEP?

Always, always expect a fight. You may not have one, but if you are

expecting it you will be better prepared for the meeting.

>8. Do you think you know the cause of your child's condition?

I'm sure for Kep it is genetic. One of my sisters is autisitc as well.

>9. Are there any dishonest groups out there I should watch out for?

Never, ever believe in an overnight, miracle cure.

>10. Do you think parents really know best- or are we too close?

I believe that we definitely know best, because we are so close. If the doc

(before the one we have now) had taken my concerns more seriously, we would

have had a dx and services much sooner.

>11. Is anyone going to that march in DC next month?

Not this year, but I went last year. Go if you can. All of the speakers

were excellent! I truly enjoyed the experience.

>12. What tests have you given your child?

If you want to contact me privately, I can tell you what we've done so far.

>13. After having a delayed child, were you worried about having other

>children?

Yes, we've worried about that, but we are not actively trying NOT to have a

child.

>

Hope that helps.

Amy H--in Michigan

Kepler 4 1/2 ASD and Bethany 6 NT

" Harmony breeds ignorance. It is the dissonant chords of life that lead us

to wisdom. " ~me

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

's birthday is July 6! Do the boys want

another brother..or do they want a sister..?

Mimi

--- doops_shmoops wrote:

> Salli,

> I am due July 7th. I told you guys as soon as I

> found out. In fact

> you guys knew even before Jeff Maybe that is why

> it seems like it

> has already been a very long time. LOL

> Jacquie H

>

>

>

> >

> > > I am pregnant right now after having both

> Greggory and Alec dx'd

> > > autistic and Alec also BP and ADHD. We are

> concerned but decided

> we

> > > were willing to take the risk.

> >

> > Jacquie:

> >

> > I don't recall when you are due, but it must be

> fairly soon?

> Another month

> > or two or am I remembering wrong?

> >

> > Salli

>

>

__________________________________________________

[Guest guest]

> I am due July 7th. I told you guys as soon as I found out. In fact

> you guys knew even before Jeff

Ha, ha, I remember that!

Maybe that is why it seems like it

> has already been a very long time. LOL

But you are feeling a bit better these days?

Salli

[Guest guest]

Hi ! Welcome!

The responses you've gotten so far cover any I would have had so I'm not

going to add anything.

in MI

Mom to 11 (HFA), 8 (HFA, ADD)

Yahoo and AOL IM smg5862

[Guest guest]

>>>>

these questions are open to anybody-

1. Do you trust doctors?

-----It's not so much a matter of trust as it is a matter of knowledge.

2. Do you think autism will ever be cured?

-----I don't think it's something that " can " be " cured " ...I think that there

are different things that we can do to help our children get along in " our

world " , but they do not need to be cured of their individuality.

3. Does it help to go to those conferences on autism?

----Depends on the conference and the content. The last " conference " I went

to was on ABA, and it put me off on ABA BIG TIME.

4. Should i expect a fight with the schools about his IEP?

----Well, depends on what you want... and it depends on your school

district.

5. Did you all have a parents advocate for the IEP?

-----Nope.

6. Was that person helpful?

-----See #5

7. Did you meet with them beforehand?

-----See #6

8. Do you think you know the cause of your child's condition?

-----For sure? No. Do I have a guess? Yes. Does that sometimes change?

Yes.

9. Are there any dishonest groups out there I should watch out for?

-----Any group who says they can " cure " your child using " ABC cure " . - and

any group who disclaims any other group because " their own " treatment is the

only one that really works.

10. Do you think parents really know best- or are we too close?

-----We parents ABSOLUTELY know more about our children than anyone on this

earth.

11. Is anyone going to that march in DC next month?

-----Not me.

12. What tests have you given your child?

-----ADI (Autism Diagnostic Inventory), which led to the dx, Urine Peptide

test.

13. After having a delayed child, were you worried about having other

children?

-----No. We decided not to have anymore children long before we realized

Jacqui was autistic.

i'm sure when i get 's eval next week i'll have more questions-

but that's all for now

thanks everyone!

in NY

[Guest guest]

Jacquie,

My sis is due June 2. If she actually decides to come out then, she'll be

born on my birthday. :-)

Sue

Re: Names and new member intro

> Salli,

> I am due July 7th. I told you guys as soon as I found out. In fact

> you guys knew even before Jeff Maybe that is why it seems like it

> has already been a very long time. LOL

> Jacquie H

>

>

>

> >

> > > I am pregnant right now after having both Greggory and Alec dx'd

> > > autistic and Alec also BP and ADHD. We are concerned but decided

> we

> > > were willing to take the risk.

> >

> > Jacquie:

> >

> > I don't recall when you are due, but it must be fairly soon?

> Another month

> > or two or am I remembering wrong?

> >

> > Salli

>

>

>

>

>

>

>

>

[Guest guest]

Still catching up...

1. Do you trust doctors?

I know there are trustworthy doctors; there are also many who aren't. Many

pediatricians are trustworth, but just don't know enough about ASDs to be

helpful. Some will even ask for more information. I am still searching for one

in my area that I feel meets Nicky's needs.

2. Do you think autism will ever be cured?

I think that diseases can be cured. Unfortunately, autism is not a disease.

that doesn't mean there isn't anything we can do to make our children more

functional in the NT world, or that, someday researchers might find something

that will make autism avoidable.

3. Does it help to go to those conferences on autism?

Any way you can get more information is helpful. Conferences also give you a

chance to meet other people who are dealing with the same types of problems that

you are. Realizing that you are not alone is always helpful too.

4. Should i expect a fight with the schools about his IEP?

Always prepare for a fight. If you don't get one, you have information that may

become useful later on.

5. Did you all have a parents advocate for the IEP?

Nicky won't have his first IEP until October, but I am already talking to an

official advocate, as well as other people that might serve the same function if

he isn't available at the time.

6. Was that person helpful?

Wehaven't really talked enough for me to get much from him yet.

7. Did you meet with them beforehand?

See #5

8. Do you think you know the cause of your child's condition?

I have my suspicions, but I am not sure.

9. Are there any dishonest groups out there I should watch out for?

Yes there are. Avoid anyone offering a " cure " for autism, and anyone saying

that their way of treating it is the only way.

10. Do you think parents really know best- or are we too close?

I don't know of anyone else who is close enough.

11. Is anyone going to that march in DC next month?

I wish I could afford to go.

12. What tests have you given your child?

MRI, EEG, CARS evaluation, BDI evaluation, genetic profile for fragile X, speech

evaluation, OT evaluation, PT evaluation. My own experimentation with diet and

supplements.

13. After having a delayed child, were you worried about having other children?

I had already decided to make Nicky my last child when I found out.

i'm sure when i get 's eval next week i'll have more questions-

but that's all for now

thanks everyone!

in NY

[Guest guest]

>>10. Do you think parents really know best- or are we too close?

>I don't know of anyone else who is close enough.

I just had to chime in and agree with this one.

Hear, hear! Well said!

-Sara.

[Guest guest]

on 4/1/02 6:51 PM, The Byks at thebyks@... wrote:

>>10. Do you think parents really know best- or are we too close?

>I don't know of anyone else who is close enough.

I just had to chime in and agree with this one.

Hear, hear! Well said!

-Sara.

Sara- I guess what i meant by this question is sometimes, as a parent, one

might not see something negative, because we love our children so

unconditionally it's hard to accept the " truth " (which is a very

subjective term)- but i think you know what i mean.

Just like when you are in a relationship and there are problems- but you

don't see them- but all of your friends and family can....

So i see it as a catch22 or double edge sword- or whatever term you want to

use-

We do know our children better than anyone- but it's hard to be objective.

Just MHO

-

(whose family doctor said was fine and it's just his personality)

[Guest guest]

,

I know my answer was a little bit light, but most of the time, while we may be

too close, it takes someone who is very close to see the problem.

Most professionals that have assessed or dx Nicky have spent an average of 15

minutes observing him and an average of 45 minutes questioning me about his

behaviors. I'm not sure if that says negative things about their assessment

techniques or simply that experience has taught them that the parents see

behavoirs that the child(ren) don't show to non-family.

What I DO know is that the therapists that take the time to compare notes with

me after each session and work towards goals that we have set together are the

ones making rapid progress with Nicky.

Sorry once again for the light tone of my original response.

B

Re: Re: Names and new member intro

on 4/1/02 6:51 PM, The Byks at thebyks@... wrote:

>>10. Do you think parents really know best- or are we too close?

>I don't know of anyone else who is close enough.

I just had to chime in and agree with this one.

Hear, hear! Well said!

-Sara.

Sara- I guess what i meant by this question is sometimes, as a parent, one

might not see something negative, because we love our children so

unconditionally it's hard to accept the " truth " (which is a very

subjective term)- but i think you know what i mean.

Just like when you are in a relationship and there are problems- but you

don't see them- but all of your friends and family can....

So i see it as a catch22 or double edge sword- or whatever term you want to

use-

We do know our children better than anyone- but it's hard to be objective.

Just MHO

-

(whose family doctor said was fine and it's just his personality)

[Guest guest]

> Sara- I guess what i meant by this question is sometimes, as a parent, one

> might not see something negative, because we love our children so

> unconditionally it's hard to accept the " truth " (which is a very

> subjective term)- but i think you know what i mean.

> Just like when you are in a relationship and there are problems- but you

> don't see them- but all of your friends and family can....

> So i see it as a catch22 or double edge sword- or whatever term you want

to

> use-

> We do know our children better than anyone- but it's hard to be objective.

I am the opposite of that.

I think when it comes to , I am overly objective, that I see MORE

negatives than anyone else. While everyone says, oh 's doing so great,

I'm the one saying, " yes, but... "

Of course, I am also looking at it from a different place than you are at

right now, . We're almost 3 years post dx now. Time makes a

MASSIVE difference, more than I can possibly tell you. :-)

Jacquie

[Guest guest]

" Sorry once again for the light tone of my original response. "

- no problem. a light tone is fine. tones are so hard to figure out

online many times anyway- so i take much with a grain of salt.

I agree with the assessment time being so short and how the heck do they

know-

I asked someone the same thing the other day. I hope they know regardless

of time spent.

I was actually a Lovaas therapist for a while, and we always talked to the

parents at length and took a huge interest in the child. Doctors who see

the kids once- i worry about them sometimes. They have no emotional

connection to the child.

trust is so hard sometimes-

[Guest guest]

Oops!

I also meant to say that actually, because parents are the ones most

concerned with the wellbeing of their child(ren), they are often the

first to notice the negative changes as well.

Re: Re: Names and new member intro

on 4/1/02 6:51 PM, The Byks at thebyks@... wrote:

>>10. Do you think parents really know best- or are we too close?

>I don't know of anyone else who is close enough.

I just had to chime in and agree with this one.

Hear, hear! Well said!

-Sara.

Sara- I guess what i meant by this question is sometimes, as a parent, one

might not see something negative, because we love our children so

unconditionally it's hard to accept the " truth " (which is a very

subjective term)- but i think you know what i mean.

Just like when you are in a relationship and there are problems- but you

don't see them- but all of your friends and family can....

So i see it as a catch22 or double edge sword- or whatever term you want to

use-

We do know our children better than anyone- but it's hard to be objective.

Just MHO

-

(whose family doctor said was fine and it's just his personality)

[Guest guest]

Hi ,

I'm way way way behind in my e-mails, so I don't know if anyone else has told

you that there is a glossary on the P_A website. If you're looking for

something that isn't on the list, let me know.

Tuna

does anyone have a list of shortcuts-

like dh?

and any other terms i need to know

in NYGet more from the Web. FREE MSN Explorer download :

http://explorer.msn.com

[Guest guest]

these questions are open to anybody-

1. Do you trust doctors? No

2. Do you think autism will ever be cured? No

3. Does it help to go to those conferences on autism? Absolutely

4. Should i expect a fight with the schools about his IEP?

Prepare for the worst, pray for the best

5. Did you all have a parents advocate for the IEP? No

6. Was that person helpful?

7. Did you meet with them beforehand?

8. Do you think you know the cause of your child's condition?

No, but I have many theories

9. Are there any dishonest groups out there I should watch out for?

Yes, there are quacks and scam artists

10. Do you think parents really know best- or are we too close?

We are experts on our own kids

11. Is anyone going to that march in DC next month?

Not me, would like to go to a Canadian march, though

12. What tests have you given your child? EEG, MRI, many developmental tests

13. After having a delayed child, were you worried about having other

children? No

Tuna :)Get more from the Web. FREE MSN Explorer download :

http://explorer.msn.com