Introduction

[Guest guest]

In a message dated 6/13/99 4:49:53 AM Eastern Daylight Time,

joeysala@... writes:

<< Fortunately I am not prone to severe depression, and the people around me

do a lot to keep me going when I do get depressed. But I desperately need the

support and advice of those who have walked - and are walking - in my shoes.

>>

Hi ,

Glad to hear you found this Group. They are the best. You can whine,

complain, nag and rant all you want to when you don't feel well. On the

other hand when you have great success you can share and lift others up. It

is one of the most fantastic groups I have ever encountered. (Not to say I

have seen so many. LOL)

I guess I should be doing better than I am. I have pain every day. You are

so fortunate to have found a Dr. who will do the IV Clindy. My Dr. gives me

an Rx for Minocin while holding her nose. She doesn't believe in this

protocol at all.

Maybe you are just having a herx right now and will be a lot better in a

little while. I sure hope so.

Write again and let us know how you are doing.

Anita

RA 26 years, Fibro, AP 16 months

[Guest guest]

Hi Theresa and welcome. My story is almost identical

to yours. I was 43 when it hit. Well to make a long

story short, if you didnt read my little " story " at

the rheumatic.org site, look for it under Dottie. I am

the only Dottie in the stories.

Anyway, I started AP a little more than a year after

first getting symptoms. I have never looked back. I am

only on Biaxin and Minocin, never have any pains or

stiffness. I ski in the winter, rollerblade, and

dance. I have laid vinyl floors, carpets this year.

The only reminder I have of my illness is 3 still

moderatly enlarged joints on my fingers. They dont

hurt, unless I bang them on something.

I wish I had found AP sooner than I did. I was on the

usual therapies for the first year, before I heard of

AP. But better late than never.

You are in a much better situation. The sooner it is

caught, the faster improvement is seen. It doesnt have

enough time to get entrenched in you system.

Hope this helps.

Dottie

__________________________________________________

[Guest guest]

> The only reminder I have of my illness is 3 still

> moderatly enlarged joints on my fingers. They dont

> hurt, unless I bang them on something.

Dottie, do you and your doctor feel the joints are still active, or is the

enlargement from prior damage? I still have some active joints, and am

thinking of asking my doctor to try minocin again (I had a sensitivity to it

early in treatment, and am hoping I can try it now that I have knocked the

disease down a lot with tetracycline and a course of Biaxin). I seem to be

at a plateau now, not backsliding, but not progressing for some time. Mine

are occasionally painful, but not always, and the swelling goes up and down.

I occasionally get a bad flareup in my hips or neck, but overall am a lot

better than before I started the AP. Does that sound anything like your

situation? Have you discussed long-term strategies with your doc? I would

appreciate comments from you or anyone else that has something to say about

this. Liz G

[Guest guest]

Steve:

Welcome to the list! And thank you for your introduction. Are you being

tested or treated for heavy metal toxicity? How old are you now?

Take Care,

[Guest guest]

Sabina,

Welcome to the group! My son had a rash on his cheeks that sounds

like what your son has. My son's rash went away once on the gfcf

diet. When we first started the Houston enzymes, the rash came back

for a few weeks - must have been some additional withdrawal - then

went away.

My son tantrummed so often, it was a way of life for us. He also did

self-biting and still does when he has a food reaction without

enzymes or has a food that enzymes do not help him with (such as

nitrates). He now takes all three of the Houston enzymes with great

success. Our story is in the files section at this site in

the " Success Stories " .

> Hello,

> I am brand new to this list and I hope someone can give me some

> feedback. My 3yr old son has recently been diagnosed ASD although

we

> have been certain for over a year. Crazy how some people are scared

> to say it. He has had a rash (looks like chiken skin) since he was

> an infant. The allergist he sees says it is just a case of really

> dry skin. I have followed her recomendations for treatment ie;

> lotions , special soap, etc. but it is still there. He also gets

> yeast rashes in his diaper area all the time. It was recomended to

> try caprylic acid but I am uncertain what dosage to give such a

> little guy (he is 48lbs). He also has a lot of trouble sleeping and

> wakes frequently in the night. He is casein free now. He has had

two

> EEG sleep studies done and his nuerologist is wanting to do 3rd to

> rule out narcolepsy. He also tantrums frequently, does the self

> injury thing and is extremely hyper(he's like the tasmanian devil).

> Anyways I have a million unanswered questions as to why and what

can

> I do for him to help as many before me have had with their child as

> well.

> Thanks to all who can help

> Sabina

[Guest guest]

> Hello,

> I am brand new to this list and I hope someone can give me some

> feedback. My 3yr old son has recently been diagnosed ASD although we

> have been certain for over a year. Crazy how some people are scared

> to say it. He has had a rash (looks like chiken skin) since he was

> an infant. The allergist he sees says it is just a case of really

> dry skin. I have followed her recomendations for treatment ie;

> lotions , special soap, etc. but it is still there.

This can be diet related, in which case enzymes should help. Can also

be yeast related. Can also be a need for EFAs [essential fatty

acids].

He also gets

> yeast rashes in his diaper area all the time. It was recomended to

> try caprylic acid but I am uncertain what dosage to give such a

> little guy (he is 48lbs).

My yeast page has ideas for you

http://www.autismchannel.net/dana/yeast.htm

> He also has a lot of trouble sleeping and

> wakes frequently in the night.

Consider yeast [see above] or phenols

http://www.autismchannel.net/dana/phenol.htm

He is casein free now. He has had two

> EEG sleep studies done and his nuerologist is wanting to do 3rd to

> rule out narcolepsy. He also tantrums frequently, does the self

> injury thing and is extremely hyper(he's like the tasmanian devil).

Sounds very much like phenols and/or yeast.

Dana

[Guest guest]

Your words are inspiring. You do give me hope that our kids can

lead a happy normal life with understanding and acceptance. I'm

sorry that it hasn't been easy for you growing up, and I am glad to

hear that things are getting better.

Thank you for sharing your story with us!

[Guest guest]

Hello Laurie

I just had to comment on your post, I was once where you are now. And I

still remember it well. At 31 months I had my son evaluated at Early

Intervention. Unfortunatly I had just learned of EI, a bit too late!! He

started st shortly after that. At 34 months he was at a 6 - 9 month old

level. Just being able to say maa, for mom, ii for hi & night & ba for

bottle. He too had other words earlier but lost them. He has been in

speech therapy for just over 2 years, 2 times a week for 30 minutes at our

children's hospital. He started a speech preK through the school system

this year at age 4, 5 days a week for 2 1/2 hours each day. And today he is

talking in 5 to 6 word sentences. It still sounds like baby talk &

articulation is a huge issue but he has come soooo far! Don't give up, it

just takes a lot more work for our little ones! has come so far,

having a great slp who knew a lot about apraxia, EFA's and a preK class that

he really enjoys has made a world of difference for him. We are working now

on feeding therapy which is going really slow. He needs OT but we aren't

able to do it at this time. I think if we could get through some of the

sensory stuff maybe the feeding issues would get better. So until then we

work little by little on that. Best wishes in your journey together, you

are at a good place loaded with info!! It has been my lifeline for a little

over a year & a half now!!

Tammy I. in FL mom to 4.9 apraxic, 7, 18 & 22

From: " mick8_7 <mick8_7@...> " <mick8_7@...>

Reply-

Subject: [ ] Introduction

Date: Thu, 27 Feb 2003 00:32:30 -0000

_________________________________________________________________

[Guest guest]

Welcome Henry! Barbara

henry <hank0134@...> wrote:Hi, This is Henry in Wichita Kansas. I just

joined the group today

and thought I should introduce myself.

I have a 12 year-old son, who was just " officially " diagnosed with AS

today. His mom and I have supected it since the article in Parade

magazine a few weeks ago.

I am both relieved and frightened. We finally have an explanation

that makes sense of his behaviour. But I am frightened at the same

time. As you probably know, he has been a handful, with lots of

behaviour problems. He is occasionally violent, due to his inability

to cope socially.

I am at a loss as to what I should do now. I'm trying to read what I

can on the web for a start, and I joined this group.

From what I have read, I may also have AS. I'm a " geek " . I'm in a

technical profession. I'm more comfortable with machines than people.

I can get extremely obsessed with an issue. I concentrate so hard on

things, people think I'm in a trance. My handwriting is atrocious, I

have poor motor skills, etc....

Hopefully, I can learn from the rest of you.

Henry

[Guest guest]

In a message dated 3/10/03 11:02:21 PM Eastern Standard Time,

hank0134@... writes:

> Hopefully, I can learn from the rest of you.

>

> Henry

>

Welcome Henry! Joining a list is what helped me learn more about AS/HFA.

Learn from what other people write...visit web sites that they recommend or

that you find...read lots...and ask questions anytime!

Roxanna

ò¿ò

It makes sense to go up the molehill

dressed for the mountain

Nan, the Wiser

[Guest guest]

Hi, This is in Delta, British Columbia. I joined the group today

as well! I have a 16 year old step-son with AS who started living

with us in October of last year (after his mom died). He was diagnosed

when he was 11, but not told about the diagnosis until he was 15.

Needless to say it's been a struggle.

His Dad also has AS (and is a " techie " (electrical engineer), although

not as severe.

I'm trying to do what I can, we're changing his high school to one

that has an AS specific program, and he's now seeing a psychiatrist to

help deal with all sorts of issues. Again, behaviour and anger is

something we're dealing with constantly. It's hard.....

I'm currently trying to figure out what role diet plays in this whole

scenario. If anyone has insight to this it would be greatly

appreciated. This kid can live off of carbohydrates (bread and

tortilla chips), but doesn't particularly like protein or vegetables.

Thanks

In , " henry " <hank0134@y...> wrote:

> Hi, This is Henry in Wichita Kansas. I just joined the group today

> and thought I should introduce myself.

>

> I have a 12 year-old son, who was just " officially " diagnosed with AS

> today. His mom and I have supected it since the article in Parade

> magazine a few weeks ago.

>

> I am both relieved and frightened. We finally have an explanation

> that makes sense of his behaviour. But I am frightened at the same

> time. As you probably know, he has been a handful, with lots of

> behaviour problems. He is occasionally violent, due to his inability

> to cope socially.

>

>

> I am at a loss as to what I should do now. I'm trying to read what I

> can on the web for a start, and I joined this group.

>

> From what I have read, I may also have AS. I'm a " geek " . I'm in a

> technical profession. I'm more comfortable with machines than people.

> I can get extremely obsessed with an issue. I concentrate so hard on

> things, people think I'm in a trance. My handwriting is atrocious, I

> have poor motor skills, etc....

>

> Hopefully, I can learn from the rest of you.

>

> Henry

[Guest guest]

Hello Henry,

I am KERRY a New Zealand Mum of AS boy who is 13 yr and was not dx till 11

although at mental health specialist and counselor and social worker and

special education people were involved no one had the whole picture and gave

a dx ....we just felt like Bad Parents.....it nearly broke up our marriage

it was hell.

I actually felt relieved to get a dx as then there was a REASON he was so

different/ difficult...these are the things that have helped our son....

Find specialists and services that KNOW about Aspergers and have experience

caring for someone with AS, DON'T accept anything less...

then read all you can and catch up your knowledge to equal them,try Tony

Attwoods web site , he is from Australia and the worlds best AS expert.I

have some quick two page info sheets I can scan and email if you give me

your private email these are helpful to give teachers friends ect so that

people know why your having these troubles with your boy.

try medication...our son benefits from high dose Anti Anxiety tablet called

Cipramil also know as Citalipran. He also takes a VERY SMALL dose Risperadol

which makes his outbursts less violent and help him think before over

reacting.

Realize that his world is filled with anxiety simply going to school for

these kids can be a huge anxiety.

Tell others there is a reason for his behavior it is still not OK to behave

that way but your working on it to help TEACH him how to recognize deal with

stress, this may be tricky as the best thing for my boy is massage but not

every one in the child's life can offer this for safety reasons.

Good luck and pls email or post a message if we can help at all. Kerry NZ

MUM of AS Boy.

-- ( ) introduction

Hi, This is Henry in Wichita Kansas. I just joined the group today

and thought I should introduce myself.

I have a 12 year-old son, who was just " officially " diagnosed with AS

today. His mom and I have supected it since the article in Parade

magazine a few weeks ago.

I am both relieved and frightened. We finally have an explanation

that makes sense of his behaviour. But I am frightened at the same

time. As you probably know, he has been a handful, with lots of

behaviour problems. He is occasionally violent, due to his inability

to cope socially.

I am at a loss as to what I should do now. I'm trying to read what I

can on the web for a start, and I joined this group.

From what I have read, I may also have AS. I'm a " geek " . I'm in a

technical profession. I'm more comfortable with machines than people.

I can get extremely obsessed with an issue. I concentrate so hard on

things, people think I'm in a trance. My handwriting is atrocious, I

have poor motor skills, etc....

Hopefully, I can learn from the rest of you.

Henry

[Guest guest]

I have heard good things about the gluten free casein free diet, as well as,

getting rid of food dyes. I am going to give it a try with my son. He is a

carb junkie as well. kathy Millard

( ) Re: introduction

Hi, This is in Delta, British Columbia. I joined the group today

as well! I have a 16 year old step-son with AS who started living

with us in October of last year (after his mom died). He was diagnosed

when he was 11, but not told about the diagnosis until he was 15.

Needless to say it's been a struggle.

His Dad also has AS (and is a " techie " (electrical engineer), although

not as severe.

I'm trying to do what I can, we're changing his high school to one

that has an AS specific program, and he's now seeing a psychiatrist to

help deal with all sorts of issues. Again, behaviour and anger is

something we're dealing with constantly. It's hard.....

I'm currently trying to figure out what role diet plays in this whole

scenario. If anyone has insight to this it would be greatly

appreciated. This kid can live off of carbohydrates (bread and

tortilla chips), but doesn't particularly like protein or vegetables.

Thanks

In , " henry " <hank0134@y...> wrote:

> Hi, This is Henry in Wichita Kansas. I just joined the group today

> and thought I should introduce myself.

>

> I have a 12 year-old son, who was just " officially " diagnosed with AS

> today. His mom and I have supected it since the article in Parade

> magazine a few weeks ago.

>

> I am both relieved and frightened. We finally have an explanation

> that makes sense of his behaviour. But I am frightened at the same

> time. As you probably know, he has been a handful, with lots of

> behaviour problems. He is occasionally violent, due to his inability

> to cope socially.

>

>

> I am at a loss as to what I should do now. I'm trying to read what I

> can on the web for a start, and I joined this group.

>

> From what I have read, I may also have AS. I'm a " geek " . I'm in a

> technical profession. I'm more comfortable with machines than people.

> I can get extremely obsessed with an issue. I concentrate so hard on

> things, people think I'm in a trance. My handwriting is atrocious, I

> have poor motor skills, etc....

>

> Hopefully, I can learn from the rest of you.

>

> Henry

[Guest guest]

Hi , welcome! This is a great list with lots of people with huge

amounts of experience! In terms of diets, some kids (like any other kids)

are allergic to certain foods and do better when those foods are eliminated

from their diets. But in terms of their being an AS diet, I don't believe

that current research supports that there is one. (Not everyone agrees with

this, however.) Some kids have sensory issues and will avoid certain foods

like the plague... or will only eat certain foods. Mine certainly falls into

the latter category. Anyway, welcome to the group! I hope you like it here!

Liz

karen_empey wrote:

> Hi, This is in Delta, British Columbia. I joined the group today

> as well! I have a 16 year old step-son with AS who started living

> with us in October of last year (after his mom died). He was diagnosed

> when he was 11, but not told about the diagnosis until he was 15.

> Needless to say it's been a struggle.

>

> His Dad also has AS (and is a " techie " (electrical engineer), although

> not as severe.

>

> I'm trying to do what I can, we're changing his high school to one

> that has an AS specific program, and he's now seeing a psychiatrist to

> help deal with all sorts of issues. Again, behaviour and anger is

> something we're dealing with constantly. It's hard.....

>

> I'm currently trying to figure out what role diet plays in this whole

> scenario. If anyone has insight to this it would be greatly

> appreciated. This kid can live off of carbohydrates (bread and

> tortilla chips), but doesn't particularly like protein or vegetables.

>

> Thanks

>

>

>

>

> In , " henry " <hank0134@y...> wrote:

> > Hi, This is Henry in Wichita Kansas. I just joined the group today

> > and thought I should introduce myself.

> >

> > I have a 12 year-old son, who was just " officially " diagnosed with AS

> > today. His mom and I have supected it since the article in Parade

> > magazine a few weeks ago.

> >

> > I am both relieved and frightened. We finally have an explanation

> > that makes sense of his behaviour. But I am frightened at the same

> > time. As you probably know, he has been a handful, with lots of

> > behaviour problems. He is occasionally violent, due to his inability

> > to cope socially.

> >

> >

> > I am at a loss as to what I should do now. I'm trying to read what I

> > can on the web for a start, and I joined this group.

> >

> > From what I have read, I may also have AS. I'm a " geek " . I'm in a

> > technical profession. I'm more comfortable with machines than people.

> > I can get extremely obsessed with an issue. I concentrate so hard on

> > things, people think I'm in a trance. My handwriting is atrocious, I

> > have poor motor skills, etc....

> >

> > Hopefully, I can learn from the rest of you.

> >

> > Henry

>

>

[Guest guest]

Hi - Thanks! It's neat to read what other parents are going through

and what they're trying with their kids. It's also nice to know

you're not alone...

-- In , Liz Bohn <lbohn@u...> wrote:

> Hi , welcome! This is a great list with lots of people with huge

> amounts of experience! In terms of diets, some kids (like any other

kids)

> are allergic to certain foods and do better when those foods are

eliminated

> from their diets. But in terms of their being an AS diet, I don't

believe

> that current research supports that there is one. (Not everyone

agrees with

> this, however.) Some kids have sensory issues and will avoid certain

foods

> like the plague... or will only eat certain foods. Mine certainly

falls into

> the latter category. Anyway, welcome to the group! I hope you like

it here!

> Liz

>

> karen_empey wrote:

>

> > Hi, This is in Delta, British Columbia. I joined the group today

> > as well! I have a 16 year old step-son with AS who started living

> > with us in October of last year (after his mom died). He was diagnosed

> > when he was 11, but not told about the diagnosis until he was 15.

> > Needless to say it's been a struggle.

> >

> > His Dad also has AS (and is a " techie " (electrical engineer), although

> > not as severe.

> >

> > I'm trying to do what I can, we're changing his high school to one

> > that has an AS specific program, and he's now seeing a psychiatrist to

> > help deal with all sorts of issues. Again, behaviour and anger is

> > something we're dealing with constantly. It's hard.....

> >

> > I'm currently trying to figure out what role diet plays in this whole

> > scenario. If anyone has insight to this it would be greatly

> > appreciated. This kid can live off of carbohydrates (bread and

> > tortilla chips), but doesn't particularly like protein or vegetables.

> >

> > Thanks

> >

> >

> >

> >

> > In , " henry " <hank0134@y...> wrote:

> > > Hi, This is Henry in Wichita Kansas. I just joined the group today

> > > and thought I should introduce myself.

> > >

> > > I have a 12 year-old son, who was just " officially " diagnosed

with AS

> > > today. His mom and I have supected it since the article in Parade

> > > magazine a few weeks ago.

> > >

> > > I am both relieved and frightened. We finally have an explanation

> > > that makes sense of his behaviour. But I am frightened at the same

> > > time. As you probably know, he has been a handful, with lots of

> > > behaviour problems. He is occasionally violent, due to his inability

> > > to cope socially.

> > >

> > >

> > > I am at a loss as to what I should do now. I'm trying to read what I

> > > can on the web for a start, and I joined this group.

> > >

> > > From what I have read, I may also have AS. I'm a " geek " . I'm in a

> > > technical profession. I'm more comfortable with machines than

people.

> > > I can get extremely obsessed with an issue. I concentrate so hard on

> > > things, people think I'm in a trance. My handwriting is atrocious, I

> > > have poor motor skills, etc....

> > >

> > > Hopefully, I can learn from the rest of you.

> > >

> > > Henry

> >

> >

[Guest guest]

Hi Wendi,

I recognize you and the triplets from some postings on the late,

lamented SID list.

I have an almost 6 year old daughter, diagnosed with high functioning

autism, sid, hypotonia, dysgraphia, midline crossing problems, various

vision problems (she's going to vision therapy, too) and possibly some

CAPD.

You have a big job. I do want to reassure you that there's light at

the end of the tunnel. Every diagnosis on the spectrum is a lifelong

disability, but my current battle with the school district is

convincing them my daughter meets the autistic criteria any more. So

the good news is that 2 1/2 years of pretty intensive intervention

have helped a lot.

Welcome to the list. If you want, the great people on this list will

help you learn how to be a " borg mom " and get the services those 3

kids need. It sounds like you've got a pretty good start.

[Guest guest]

I'm a little puzzled by this because I have read this is not usually a

family trait. I've cared for a lot of 2 y/o and I'd wonder how you'd spot

it in a kid that young since 2 y/o are just generally weird little

creatures anyway. Granted you are probably already more tuned in than

most parents to this type stuff. My son is 11 and until he started 1st

grade you'd have never guessed there was going to be any kind of problem.

Unlike autistic kids AS kids can seem really well put together until they

get thrown into that untamed world of the grade schooler.

Triplets - you must be like superwoman!

Kate

On Sat, 05 Apr 2003 14:02:04 -0500 Wendi Sotis <wsotis@...>

writes:

Hi, my name is Wendi and I have 2 yr 10 month old triplets.

Luke has been diagnosed high-functioning autism, though his CARS just

came

out on the low end of severe. Madeline is dx HFA as well, on the CARS

she

scores moderate autism. Actually, the neurologist wrote PDD, but says

that

means HFA - I think she's just too lazy to write it out!

The reason I joined this list is . She is currently

undiagnosed,

but I've suspected Aspergers for at least 6 months. Her siblings are

much

more obviously autistic, but she shares a lot of the symptoms to a lesser

degree (in some cases, and other cases more since she's verbal and they

are

not).

She currently gets OT through EI for sensory and fine motor issues, as

well

as motor dyspraxia and bilateral coordination problems. She also has

very

immature reflexes (ones that were supposed to disappear by 6 mos old have

not). C has seen a pediatric neurologist who officially dx her as

" echolalic " but unofficially put her " at risk " for AS, ADHD, OCD and

Bipolar! She is about to get an EEG due to " zoning out " when she looks

at

blinking red lights. She has an appt with a developmental pediatrician

May

12th, and the neuro wants me to take the kids to a psychiatrist (anyone

know of a good one in Suffolk County, Long Island, NY?). i'm also going

to

take her to a developmental optometrist since it's been noticed recently

that her eyes don't always coordinate (they aren't always looking in the

same direction - very slight but might as well get it taken care of

now!).

I recently sent in an E2 form to ARI, which came back " autistic " , and

have

done the CARS for her (myself) which comes out mild-moderate autism.

Five months ago, she was evaluated by an SLP. She's highly advanced

verbally, but at the same time has immediate and delayed echolalia and is

still jargoning/babbling. The SLP did not qualify her for services, but

suggested another eval at 3 yrs old, and told me " off the record " that C

will probably be dx AS before long - my answer was " I'm already on

it " . Within the past 2 weeks we've been going through preschool

evaluations. For some reason, nobody is taking my request for a speech

eval seriously (even with the previous evaluation in hand recommending

it),

but C has qualified for OT, PT and SpEd. All three of these evaluators

have brought up AS, and were so relieved that they didn't have to try to

convince me to take her to be diagnosed! Especially the SpEd teacher -

who

says she's worked with AS for years, also used to teach a course on

autism

for special education students at a local university - and she's never

seen

such a perfectly 'classic' case of Aspergers before. Let me remind you,

she's only 2 yrs 10 months old and already a perfect Aspie! The school

psych who evaluated her said she's hyperlexic (actually, all three kids

are!), but didn't qualify her for services. I'm hoping the OT, PT and SE

reports are strong enough to qualify her!

Thanks for listening - I have lots of questions but this is long enough

for

now!

Wendi

[Guest guest]

In a message dated 4/6/03 8:28:08 PM Eastern Daylight Time,

wsotis@... writes:

> Unfortunately, the DP appt for

> isn't until May 12th, so if he'll diagnose her it won't be till

> after the IEP...does that mean we can re-do the IEP if she's

> diagnosed? also has a problem with mid line crossing, I think I

> left that off my intro.

>

You can re-do the IEP anytime circumstances change and she needs something

changed.

But they should not be writing the IEP to reflect her dx at all. It should

reflect her needs.

Roxanna ô¿ô

Autism Happens...

[Guest guest]

Hi ,

Thanks! Yes, that was me...hard to mistake me for someone else, huh? I

haven't gotten into the new SID lists very much.

All three should qualify for SpEd, OT and PT, the other 2 for speech as

well. The IEP meetings are April 30th. Unfortunately, the DP appt for

isn't until May 12th, so if he'll diagnose her it won't be till

after the IEP...does that mean we can re-do the IEP if she's

diagnosed? also has a problem with mid line crossing, I think I

left that off my intro.

The preschool I'm choosing is really wonderful. It came into existence

when a bunch of parents couldn't find the " right " program for their kids,

so they recruited some teachers and therapists who agreed with them and

started their own school. So far there is only one person I've met that I

didn't like much, and she's leaving.

Wendi

At 04:00 PM 04/06/2003, you wrote:

>

>Hi Wendi,

>

>I recognize you and the triplets from some postings on the late,

>lamented SID list.

>

>I have an almost 6 year old daughter, diagnosed with high functioning

>autism, sid, hypotonia, dysgraphia, midline crossing problems, various

>vision problems (she's going to vision therapy, too) and possibly some

>CAPD.

[Guest guest]

Hi Kate,

Well, I guess since I worked with autistic kids a while back I kind of

recognized some autistic traits pretty early (15 months) with Luke and

Madeline. Of course, I then went into denial for 6 months. With

, I saw her sensory problems around the time L & M started OT and I

read " Out of Sync Child " . Her's aren't as obvious as the other two. But

then gradually she began showing a lot of the same symptoms as the other 2,

without the speech delay, and to a lesser degree (in some cases more). My

mom and MIL help me with the kids and refuse to admit there is a

problem. It's so easy to dismiss because of her speech skills. I was

already suspecting AS, then the SLP who evaluated her in November pointed

out a few things I had missed.

I honestly did not tell any of the recent evaluators any of my concerns

until they had a chance to form their own opinions. So her AS symptoms

must be pretty strong since they had already come to that conclusion by the

time I mentioned it.

She's not just " quirky " , she's definitely not NT. Her OCD symptoms and

phobias and rituals, etc., really are obvious and disruptive. She talks

nonstop, with constant repetitive questioning.

All I can say about the " family trait " thing is that when I sent in the E2

to ARI on Luke and Maddie, Dr. Bernard Rimland called me about how high

they scored at such a young age. He was concerned about since it

tends to run in families (I didn't send one in for her until recently) and

asked me to keep a close eye on her after I described her to him. I'm on

another autism board, and a special needs triplets list - and it seems to

be very common to have more than one child with ASD (even when multiples

are not identical). I have one friend who also has all three triplets with

ASD.

Wendi

I'm a little puzzled by this because I have read this is not usually a

family trait. I've cared for a lot of 2 y/o and I'd wonder how you'd

spot

it in a kid that young since 2 y/o are just generally weird little

creatures anyway. Granted you are probably already more tuned in than

most parents to this type stuff. My son is 11 and until he started 1st

grade you'd have never guessed there was going to be any kind of

problem.

Unlike autistic kids AS kids can seem really well put together until

they

get thrown into that untamed world of the grade schooler.

Triplets - you must be like superwoman!

Kate

---

[Guest guest]

Hi ,

I read your message in absolute awe. No way can I even imagine trying to

cope with Jim times three. I think you are my new hero!

Kathy H in IN

Jim 13, AS & ADHD

( ) Introduction

> Hi, my name is Wendi and I have 2 yr 10 month old triplets.

>

> Luke has been diagnosed high-functioning autism, though his CARS just came

> out on the low end of severe. Madeline is dx HFA as well, on the CARS she

> scores moderate autism. Actually, the neurologist wrote PDD, but says

that

> means HFA - I think she's just too lazy to write it out!

>

> The reason I joined this list is . She is currently undiagnosed,

> but I've suspected Aspergers for at least 6 months. Her siblings are much

> more obviously autistic, but she shares a lot of the symptoms to a lesser

> degree (in some cases, and other cases more since she's verbal and they

are

> not).

>

> She currently gets OT through EI for sensory and fine motor issues, as

well

> as motor dyspraxia and bilateral coordination problems. She also has very

> immature reflexes (ones that were supposed to disappear by 6 mos old have

> not). C has seen a pediatric neurologist who officially dx her as

> " echolalic " but unofficially put her " at risk " for AS, ADHD, OCD and

> Bipolar! She is about to get an EEG due to " zoning out " when she looks at

> blinking red lights. She has an appt with a developmental pediatrician

May

> 12th, and the neuro wants me to take the kids to a psychiatrist (anyone

> know of a good one in Suffolk County, Long Island, NY?). i'm also going

to

> take her to a developmental optometrist since it's been noticed recently

> that her eyes don't always coordinate (they aren't always looking in the

> same direction - very slight but might as well get it taken care of now!).

>

> I recently sent in an E2 form to ARI, which came back " autistic " , and have

> done the CARS for her (myself) which comes out mild-moderate autism.

>

> Five months ago, she was evaluated by an SLP. She's highly advanced

> verbally, but at the same time has immediate and delayed echolalia and is

> still jargoning/babbling. The SLP did not qualify her for services, but

> suggested another eval at 3 yrs old, and told me " off the record " that C

> will probably be dx AS before long - my answer was " I'm already on

> it " . Within the past 2 weeks we've been going through preschool

> evaluations. For some reason, nobody is taking my request for a speech

> eval seriously (even with the previous evaluation in hand recommending

it),

> but C has qualified for OT, PT and SpEd. All three of these evaluators

> have brought up AS, and were so relieved that they didn't have to try to

> convince me to take her to be diagnosed! Especially the SpEd teacher -

who

> says she's worked with AS for years, also used to teach a course on autism

> for special education students at a local university - and she's never

seen

> such a perfectly 'classic' case of Aspergers before. Let me remind you,

> she's only 2 yrs 10 months old and already a perfect Aspie! The school

> psych who evaluated her said she's hyperlexic (actually, all three kids

> are!), but didn't qualify her for services. I'm hoping the OT, PT and SE

> reports are strong enough to qualify her!

>

> Thanks for listening - I have lots of questions but this is long enough

for

> now!

> Wendi

>

>

>

>

[Guest guest]

Thanks, Roxanna. This is my first IEP (times 3) and I didn't realize

that. I thought the dx came into it somehow. That's good news!

Wendi

> You can re-do the IEP anytime circumstances change and she needs

something

> changed.

>

> But they should not be writing the IEP to reflect her dx at all.

It should

> reflect her needs.

> Roxanna ô¿ô

>

> Autism Happens...

[Guest guest]

Kathy,

I'm no hero! I don't know any different! I went from having no kids

to triplets with ASD...gotta do what ya gotta do, you know?

Wendi

> Hi ,

>

> I read your message in absolute awe. No way can I even imagine

trying to

> cope with Jim times three. I think you are my new hero!

>

> Kathy H in IN

[Guest guest]

In a message dated 4/6/03 10:24:47 PM Eastern Daylight Time,

wsotis@... writes:

> Thanks, Roxanna. This is my first IEP (times 3) and I didn't realize

> that. I thought the dx came into it somehow. That's good news!

>

> Wendi

>

The dx might help you get them to take her issues more seriously.

Technically, they should really look at her testing and if she is " far enough

behind " - she will qualify for sped services.

It can sometimes be difficult. My 3 yo just turned 3 in December and

transferred to public school pre-k. At first, he wasn't going to qualify

because his speech eval didn't show he had much of a problem. They did

another more in depth test two weeks later and suddenly, he did qualify with

a severe expressive delay.

Roxanna ô¿ô

Autism Happens...

[Guest guest]

Thanks Roxanna;

Sorry no more apologies!lol (its a Canadian thing)

I will look for the books and check the web add. Have you had personal

experience with any of the programs?

kneeleee@... wrote:

> In a message dated 4/25/03 1:14:00 PM Eastern Daylight Time,

> sfraleigh@... writes:

>

> > I do wonder whether we should be looking at doing OT or social skills

> > training outside school and home though or can one attempt those on

> > our own? Any thoughts..

> > Sorry this is longer than I planned.

> >

> > Gratefully Yours

> >

> >

>

> If you find a good program, I'm sure it would only benefit. There are

> a few

> books you can read for ideas to try on your own - " Teaching your child

> the

> language of social success " is a good book, IMO. It goes through

> all the

> various parts of language. " Relationship Development Intervention "

> <A

>

HREF= " http://www.connectionscenter.com/workshops/viewAssessment.asp?wid=27 " >RDI

>

> Assessment Workshops @ Connections Center</A>

>

> and " Teaching children with autism to Mind Read " is one I like also.

>

> Welcome to our group and DON'T APOLOGIZE! It's not allowed!

> Roxanna ö¿ö

>

>

> " ...don't forget what happened to the man who suddenly got everything

> he'd

> ever wished for...

> He lived happily ever after. "

> Willy Wonka

>

>

>

>

>

>

>

>

>