answer to maggie

[Guest guest]

> Yes! All three, lol, if that's okay.

Oh, man. Okay.

Before dx and therapy, at 3 years old, was testbook classic autism. No

speech, no eye contact, no physical contact. Spent hours lining up sponge

alphabet letters. Responded to changes in routine with screaming

hystrionics. Responded to transistions the same way. Ditto with being

interupted, touched, bathed, etc. If you entered a room he was in, he would

push you back out, screaming the whole time. He was a miserable, unhappy

child.

After dx, we had a short period of speech therapy before we moved. During

that time I got them to teach me everything I needed to know for that stage.

Once we moved, speech was once a month. He gained a few functional words

and phrases over the following 8 months, enough to communicate basic needs.

He didn't start to actually talk until we removed casein, and then he

learned to talk and communicate all on his own. I credit speech therapy

with opening the door, but it was the cf diet that allowed him to walk

through it. that, and the book 'more than words' published by the hanen

program.

When he started preschool, he had a one-on-one aide, as well as OT once a

month. In our case, OT was useless aside from dealing with fine motor

issues. It didn't do jack for him concerning the rest of his life. We

tried Wilbarger brushing, but he hated it.

When he started junior kindergarten in public school, full inclusion, he had

a one-on-one aide, speech was dropped, OT continued once a month, and they

added PT. Emphasis was placed on social inclusion and turn-taking. THAT

made a huge difference.

Now in first grade, he has a part-time aide, OT consult every three months,

PT consult every three months. He goes to the sped resource room often for

fine motor support work. It's made a huge difference in handwriting. His

teacher has his desk placed right next to hers for easy redirect or helping

him attend to task. Our biggest IEP goal is helping him independantly

attend to his work.

Remarkably, the most valuable therapeutic aide this year seems to be the

Playstation. It has caused his language to explode. We figure it's because

he finally has something he really WANTS to talk about.

Through the years, we tried SuperNuThera, DMG, and TMG. All were

discontinued, as their benefits did not outweigh their cost. Now he's on

clonidine, which works pretty well - and it's FREE on our drug plan!

So where is he at the other side of the therapy? At nearly 7, he is

talkative and makes sense about 80% of the time. He still has massive

verbal stims, but all other stims are gone. Transistions, changes in

routine, those are taken in stride. He's a very happy kid, although he is

struggling with extreme emotions and how to deal with and regulate them.

Has had any sensory

> integration therapy as well?

Not formally. Only what I've done at home on the side. I really can't

evaluate the effect of it, since, like all therapies, we just integrated it

into home life and so we don't have empirical measurements to compare. We

were lucky in that he is an only child and I'm a SAHM, so I was able to just

create an autism-friendly autism-centred home very easily. our entire home

life has been one big therapy session for four years. We don't just have

therapy, we LIVE it. (at this point, I've forgotten what my idea of normal

was!)

>And by the way, I think it is very impressive for

> AND you that he is mainstreamed and no longer needing extra services.

Well, thanks! I don't take much credit though -- I think he was always

pre-programmed with the potential to progress at the rate he has; all I've

done is ridden along for support.

Jacquie

[Guest guest]

Hi Jacquie,

Thanks for replying to my questions. It is encouraging to see how much

has grown, how the therapies have worked. And I still believe that

you and your husband played a major role in that. Without a supportive

environment, would have had that much more of a difficult time

adjusting his behaviors.

To you, and everyone else with anecdoctal experience, what exactly is

casein, its impact, etc.? Same with gluton? Please use small words

explaining this to me--I am very tired today.

Thank you for all the information. I suppose I could do a google search,

but the information is always more helpful coming from parents.

Maggie

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

> I just heard about that book *More Than Words*..and

> was thinking of ordering it. I have a question...do

> you think it could work with even though he is

> almost 7?

>

> Mimi

Absolutely. The program doesn't address age, it addresses level of

communication and how to get to the next level!

It's WONDERFUL.

Jacquie

[Guest guest]

Wow How amazing and encouraging! Way to Go and Mommy!!

>>we removed casein<< Is still casein free? If not, how long was he on the

diet? I am currently using enzymes however I plan to try the casein free with

(just still researching foods etc)

>>Now he's on clonidine, which works pretty well << What is clonidine used for?

Again, thanks for sharing!

Warm Regards

& ASD 11/25/00 in Maine

answer to maggie

> Yes! All three, lol, if that's okay.

Oh, man. Okay.

Before dx and therapy, at 3 years old, was testbook classic autism. No

speech, no eye contact, no physical contact. Spent hours lining up sponge

alphabet letters. Responded to changes in routine with screaming

hystrionics. Responded to transistions the same way. Ditto with being

interupted, touched, bathed, etc. If you entered a room he was in, he would

push you back out, screaming the whole time. He was a miserable, unhappy

child.

After dx, we had a short period of speech therapy before we moved. During

that time I got them to teach me everything I needed to know for that stage.

Once we moved, speech was once a month. He gained a few functional words

and phrases over the following 8 months, enough to communicate basic needs.

He didn't start to actually talk until we removed casein, and then he

learned to talk and communicate all on his own. I credit speech therapy

with opening the door, but it was the cf diet that allowed him to walk

through it. that, and the book 'more than words' published by the hanen

program.

When he started preschool, he had a one-on-one aide, as well as OT once a

month. In our case, OT was useless aside from dealing with fine motor

issues. It didn't do jack for him concerning the rest of his life. We

tried Wilbarger brushing, but he hated it.

When he started junior kindergarten in public school, full inclusion, he had

a one-on-one aide, speech was dropped, OT continued once a month, and they

added PT. Emphasis was placed on social inclusion and turn-taking. THAT

made a huge difference.

Now in first grade, he has a part-time aide, OT consult every three months,

PT consult every three months. He goes to the sped resource room often for

fine motor support work. It's made a huge difference in handwriting. His

teacher has his desk placed right next to hers for easy redirect or helping

him attend to task. Our biggest IEP goal is helping him independantly

attend to his work.

Remarkably, the most valuable therapeutic aide this year seems to be the

Playstation. It has caused his language to explode. We figure it's because

he finally has something he really WANTS to talk about.

Through the years, we tried SuperNuThera, DMG, and TMG. All were

discontinued, as their benefits did not outweigh their cost. Now he's on

clonidine, which works pretty well - and it's FREE on our drug plan!

So where is he at the other side of the therapy? At nearly 7, he is

talkative and makes sense about 80% of the time. He still has massive

verbal stims, but all other stims are gone. Transistions, changes in

routine, those are taken in stride. He's a very happy kid, although he is

struggling with extreme emotions and how to deal with and regulate them.

Has had any sensory

> integration therapy as well?

Not formally. Only what I've done at home on the side. I really can't

evaluate the effect of it, since, like all therapies, we just integrated it

into home life and so we don't have empirical measurements to compare. We

were lucky in that he is an only child and I'm a SAHM, so I was able to just

create an autism-friendly autism-centred home very easily. our entire home

life has been one big therapy session for four years. We don't just have

therapy, we LIVE it. (at this point, I've forgotten what my idea of normal

was!)

>And by the way, I think it is very impressive for

> AND you that he is mainstreamed and no longer needing extra services.

Well, thanks! I don't take much credit though -- I think he was always

pre-programmed with the potential to progress at the rate he has; all I've

done is ridden along for support.

Jacquie

[Guest guest]

Thanks for sharing your sotry, Jacquie. is an inspiration.

(SAHM in GA)

MSN elizabethloht@...

n 33, mo, no formal dx

Phoebe, 12 weeks

answer to maggie

>

> > Yes! All three, lol, if that's okay.

>

> Oh, man. Okay.

>

> Before dx and therapy, at 3 years old, was testbook classic autism.

No

> speech, no eye contact, no physical contact. Spent hours lining up sponge

> alphabet letters. Responded to changes in routine with screaming

> hystrionics. Responded to transistions the same way. Ditto with being

> interupted, touched, bathed, etc. If you entered a room he was in, he

would

> push you back out, screaming the whole time. He was a miserable, unhappy

> child.

>

> After dx, we had a short period of speech therapy before we moved. During

> that time I got them to teach me everything I needed to know for that

stage.

> Once we moved, speech was once a month. He gained a few functional words

> and phrases over the following 8 months, enough to communicate basic

needs.

> He didn't start to actually talk until we removed casein, and then he

> learned to talk and communicate all on his own. I credit speech therapy

> with opening the door, but it was the cf diet that allowed him to walk

> through it. that, and the book 'more than words' published by the hanen

> program.

>

> When he started preschool, he had a one-on-one aide, as well as OT once a

> month. In our case, OT was useless aside from dealing with fine motor

> issues. It didn't do jack for him concerning the rest of his life. We

> tried Wilbarger brushing, but he hated it.

>

> When he started junior kindergarten in public school, full inclusion, he

had

> a one-on-one aide, speech was dropped, OT continued once a month, and they

> added PT. Emphasis was placed on social inclusion and turn-taking. THAT

> made a huge difference.

>

> Now in first grade, he has a part-time aide, OT consult every three

months,

> PT consult every three months. He goes to the sped resource room often

for

> fine motor support work. It's made a huge difference in handwriting. His

> teacher has his desk placed right next to hers for easy redirect or

helping

> him attend to task. Our biggest IEP goal is helping him independantly

> attend to his work.

>

> Remarkably, the most valuable therapeutic aide this year seems to be the

> Playstation. It has caused his language to explode. We figure it's

because

> he finally has something he really WANTS to talk about.

>

> Through the years, we tried SuperNuThera, DMG, and TMG. All were

> discontinued, as their benefits did not outweigh their cost. Now he's on

> clonidine, which works pretty well - and it's FREE on our drug plan!

>

> So where is he at the other side of the therapy? At nearly 7, he is

> talkative and makes sense about 80% of the time. He still has massive

> verbal stims, but all other stims are gone. Transistions, changes in

> routine, those are taken in stride. He's a very happy kid, although he is

> struggling with extreme emotions and how to deal with and regulate them.

>

>

> Has had any sensory

> > integration therapy as well?

>

> Not formally. Only what I've done at home on the side. I really can't

> evaluate the effect of it, since, like all therapies, we just integrated

it

> into home life and so we don't have empirical measurements to compare. We

> were lucky in that he is an only child and I'm a SAHM, so I was able to

just

> create an autism-friendly autism-centred home very easily. our entire

home

> life has been one big therapy session for four years. We don't just have

> therapy, we LIVE it. (at this point, I've forgotten what my idea of

normal

> was!)

>

>

> >And by the way, I think it is very impressive for

> > AND you that he is mainstreamed and no longer needing extra services.

>

> Well, thanks! I don't take much credit though -- I think he was always

> pre-programmed with the potential to progress at the rate he has; all I've

> done is ridden along for support.

>

> Jacquie

>

>

>

[Guest guest]

i missed the original to this but i dh and i did the more than words program

this past winter and it was fantastic. there is no age criteria involved at all

- it's all based on levels of communication as jacquie said. that being said

even those levels are loose - most of the kids in the same class as us

straddled various levels.

M.G.mum to

Sebastian, 11 kinda quirky(NT)

Rowan, 6 extra quirky (ASD)

married to and living in Northern Ontario

Re: answer to maggie

> I just heard about that book *More Than Words*..and

> was thinking of ordering it. I have a question...do

> you think it could work with even though he is

> almost 7?

>

> Mimi

Absolutely. The program doesn't address age, it addresses level of

communication and how to get to the next level!

It's WONDERFUL.

Jacquie

[Guest guest]

> >>we removed casein<< Is still casein free? If not, how long was he

on the diet?

He's still casein free, and so am I. He's been free of it since February

2000. I've been off it since August 2000. We'll NEVER go back;

reintroduction of it to either of us causes massive changes in brain

function.

> >>Now he's on clonidine, which works pretty well << What is clonidine used

for?

>

Some kids on the list take it for sleep; takes it to counteract

hyperactivity. I think it probably doesn't counter ADD as well as ritilin

or strattera, but my ped doesn't prescribe stimulants for autistic kids, so

this is all that's open to us at the moment. It's taken the edge off, so

I'm pretty happy with it.

> Again, thanks for sharing!

I was happy to. It was nice to get the chance to tell everyone how

USED to be -- because sometimes I feel like maybe nobody takes me seriously

any more! LOL.

Jacquie

[Guest guest]

> I'm definately going to get the book! Thanks for

> getting back to me, Jacquie, I hope you are feeling a

> bit better.

Thanks, Mimi - I am. DO get the book -- it is absolutely wonderous, and

everything in it is something you can relate to and do really easily.

Jacquie

[Guest guest]

> >>*More Than Words*.<<

>

> Would this book be good for a 2.5 year old who is basically non-verbal?

Thanks

Absolutely! It starts right at the non-verbal stage and moves up from

there.

Jacquie

[Guest guest]

>

> I was happy to. It was nice to get the chance to tell everyone how

> USED to be -- because sometimes I feel like maybe nobody takes me

seriously

> any more! LOL.

I hope you don't really mean that last remark!!

Sue

[Guest guest]

>>It has worried me that some people might be thinking that I can't relate to

them. So I was glad to get the opportunity to write a post that shows that I do

know where people are coming from because I've been there<<

I love to hear from people like you because you have BTDT and do know what you

are talking about. I hope some day I can be on the answering end for a new

mother (to autism) like you have and others have been for me.

Warm Regards

& ASD 11/25/00 in Maine

Re: answer to maggie

> > I was happy to. It was nice to get the chance to tell everyone how

> > USED to be -- because sometimes I feel like maybe nobody takes me

> seriously

> > any more! LOL.

>

>

> I hope you don't really mean that last remark!!

Well, to be truthful...I do. I almost sent a post about my feelings last

week, but decided not to for fear of seeming too needy.

It's just that is SO high functioning now that sometimes I wonder if,

when I give my advice or viewpoint, people who haven't known us for years

are thinking, " sure. what does SHE know about it? Look at HER kid. " But I

don't want to be forever posting and saying, " used to be... " "

was... " etc, cuz that could get really boring really fast.

It has worried me that some people might be thinking that I can't relate to

them. So I was glad to get the opportunity to write a post that shows that

I do know where people are coming from because I've been there. Still am

there.

Jacquie

[Guest guest]

> > I was happy to. It was nice to get the chance to tell everyone how

> > USED to be -- because sometimes I feel like maybe nobody takes me

> seriously

> > any more! LOL.

>

>

> I hope you don't really mean that last remark!!

Well, to be truthful...I do. I almost sent a post about my feelings last

week, but decided not to for fear of seeming too needy.

It's just that is SO high functioning now that sometimes I wonder if,

when I give my advice or viewpoint, people who haven't known us for years

are thinking, " sure. what does SHE know about it? Look at HER kid. " But I

don't want to be forever posting and saying, " used to be... " "

was... " etc, cuz that could get really boring really fast.

It has worried me that some people might be thinking that I can't relate to

them. So I was glad to get the opportunity to write a post that shows that

I do know where people are coming from because I've been there. Still am

there.

Jacquie

[Guest guest]

I second what said, Jacquie. Without mothers like you, how would

anyone learn? You've been to the front lines of the war....now you can

share your story during the peace talks (okay, I'm running with the

Beirut analogy).

Maggie

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

In a message dated 5/7/03 4:55:00 PM Eastern Daylight Time, vhunnius@...

writes:

> It has worried me that some people might be thinking that I can't relate to

> them.

I've never felt that way. I look at and think please God please let

that be my kid too. Please don't let my child be lost in autism forever.

I think you relate very well and it's nice to see someone getting back to

life instead of being a ghost like I am.

Hugs

[Guest guest]

Dear Jacquie:

Your heart is in the right place, but I don't think anyone here is judging

you. Ya know how I know? Because you did such a good job making this the

kind of place where that doesn't happen. It is very refreshing that this

list is not mired in some sort of competition of " who has it worse " .

There are no easy rides with ASD, and no matter how HF is, we all know

it isn't the same thing as NT, not by a long shot : )

(SAHM in GA)

MSN elizabethloht@...

n 33, mo, no formal dx

Phoebe, 12 weeks

Re: answer to maggie

>

> > > I was happy to. It was nice to get the chance to tell everyone how

> > > USED to be -- because sometimes I feel like maybe nobody takes me

> > seriously

> > > any more! LOL.

> >

> >

> > I hope you don't really mean that last remark!!

>

>

> Well, to be truthful...I do. I almost sent a post about my feelings last

> week, but decided not to for fear of seeming too needy.

>

> It's just that is SO high functioning now that sometimes I wonder if,

> when I give my advice or viewpoint, people who haven't known us for years

> are thinking, " sure. what does SHE know about it? Look at HER kid. " But

I

> don't want to be forever posting and saying, " used to be... " "

> was... " etc, cuz that could get really boring really fast.

>

> It has worried me that some people might be thinking that I can't relate

to

> them. So I was glad to get the opportunity to write a post that shows

that

> I do know where people are coming from because I've been there. Still am

> there.

>

> Jacquie

>

>

>

[Guest guest]

Well, it appeared that Yahoo ate the orginal when it was time to send the

message to me.

I know what you are saying Jacquie.

I feel the same way about Savannah now. Things were so much worse when she

was younger and we didn't know what was going on.

Now we have different problems that are really nothing but annoying as hell.

Cheyenne and Sierra are not that bad offf. Cheyenne's biggest problem is

her speech delay. Sierra is just a really mellow kid in general and because

of that her issues are not that noticable. She still withdraws in more when

she is stressed than she does acts out. Don't know if that is good or bad.

Then there is Dalton.

He is like 80X worse than Savannah ever was.

Right now he is staying out of trouble sitting in his box with his bear and

watching the Magic Schoolbus.

Georga

Visit my new web page at www.ubahbookshelf.com

This tag line space for rent.

Re: answer to maggie

>

>

> >

> > > > I was happy to. It was nice to get the chance to tell everyone how

>

> > > > USED to be -- because sometimes I feel like maybe nobody takes me

> > > seriously

> > > > any more! LOL.

> > >

> > >

> > > I hope you don't really mean that last remark!!

> >

> >

> > Well, to be truthful...I do. I almost sent a post about my feelings

last

> > week, but decided not to for fear of seeming too needy.

> >

> > It's just that is SO high functioning now that sometimes I wonder

if,

> > when I give my advice or viewpoint, people who haven't known us for

years

> > are thinking, " sure. what does SHE know about it? Look at HER kid. "

But

> I

> > don't want to be forever posting and saying, " used to be... " "

> > was... " etc, cuz that could get really boring really fast.

> >

> > It has worried me that some people might be thinking that I can't relate

> to

> > them. So I was glad to get the opportunity to write a post that shows

> that

> > I do know where people are coming from because I've been there. Still

am

> > there.

> >

> > Jacquie

> >

> >

> >

[Guest guest]

> I exist right at the very edge of society. If that's not a ghost, what

is?

Wow, this is the most profound thing I've heard in a while.

[Guest guest]

> I think you relate very well and it's nice to see someone getting back to

> life instead of being a ghost like I am.

>

Wait a minute...you think I have a life? ROTFLMAO!

You have more of a life than I do, ! You have that autism group, and

the get-togethers, and the work you do for the group...you have more social

contact in one night than I have in a month!

Here's a sample of my week:

Monday: get up, get up and ready for school, drop him off, do housework

until noon, play playstation or paint til three, go get from school,

take him out for a treat, come home, make supper and play with while dh

works out, serve supper, do supper dishes, drop in front of tv/computer/ps2

until I can't keep my eyes open.

Tuesday and Wednesday: same as Monday.

Thrusday: run errands after housework, otherwise the same as Monday.

Friday: grocery shop instead of housework, otherwise the same as Monday.

Saturday and Sunday: be with ERic while dh works or sleeps, try desperately

to get boy out of house and into community, be it store, park, whatever.

This does not always work. Sometimes we don't leave the house for two days.

People I talk to in a week, on average: my mom, twice a day. Nesbitt, once

a week. Sheri, my best friend, once a week. Debbie, a mom I know at

school, every day while waiting for the kids. Misc store clerks, once every

day or two. Telemarketers. Oh, and my husband.

I exist right at the very edge of society. If that's not a ghost, what is?

:-)

Jacquie

[Guest guest]

>

> > I exist right at the very edge of society. If that's not a ghost, what

> is?

Yeah, well if I lived closer I would drive you nuts by making you have

contact as often as possible! ;-p

Sue

[Guest guest]

i force myself> i use to be really outgoing but now i feel very uncomfro

rtablearound people katie is taking over the computer

aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa

wendy

[Guest guest]

> Yeah, well if I lived closer I would drive you nuts by making you have

> contact as often as possible! ;-p

>

LOL. I had a horrible moment at the gas station today when I was hailed by

a girl I used to casually hang out with a year or two ago whoe had just

started working at the station. I haven't seen her in a year or more, by

choice - she's someone I just ignored until she went away.

Luckily the waitress face kicked in and I was able to get through the

exchange of small talk without losing my mind, but for a minute or two there

I was just floored and horrified!

Jacquie

[Guest guest]

Oh, thank God, I thought I was alone in my ghostliness.

debbi

Buster's Grandma

*April is Autism Awareness Month*

Re: answer to maggie

> I think you relate very well and it's nice to see someone getting back

to

> life instead of being a ghost like I am.

>

Wait a minute...you think I have a life? ROTFLMAO!

You have more of a life than I do, ! You have that autism group,

and

the get-togethers, and the work you do for the group...you have more

social

contact in one night than I have in a month!

Here's a sample of my week:

Monday: get up, get up and ready for school, drop him off, do

housework

until noon, play playstation or paint til three, go get from

school,

take him out for a treat, come home, make supper and play with

while dh

works out, serve supper, do supper dishes, drop in front of

tv/computer/ps2

until I can't keep my eyes open.

Tuesday and Wednesday: same as Monday.

Thrusday: run errands after housework, otherwise the same as Monday.

Friday: grocery shop instead of housework, otherwise the same as Monday.

Saturday and Sunday: be with ERic while dh works or sleeps, try

desperately

to get boy out of house and into community, be it store, park, whatever.

This does not always work. Sometimes we don't leave the house for two

days.

People I talk to in a week, on average: my mom, twice a day. Nesbitt,

once

a week. Sheri, my best friend, once a week. Debbie, a mom I know at

school, every day while waiting for the kids. Misc store clerks, once

every

day or two. Telemarketers. Oh, and my husband.

I exist right at the very edge of society. If that's not a ghost, what

is?

:-)

Jacquie

[Guest guest]

I'm a ghost too....I went out today, the sun was shining, and I felt like

a vampire....

Maggie

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

>>>>>>

I love to hear from people like you because you have BTDT and do know what

you are talking about. I hope some day I can be on the answering end for a

new mother (to autism) like you have and others have been for me.

Warm Regards

& ASD 11/25/00 in Maine

<<<<<<

Oh, you will be...

:-D

Penny