RE: That friend of mine.....

[Guest guest]

Grace:

This is your online diagnostician speaking. You, a parent of children with

autism, know autism inside out. I think you are right to be concerned. And

Shaun knows what he is looking at also.

I think I'd say something, but I don't know if it will be heard. Make is

sound non-threatening and suggest they go for a county evaluation program.

She may not listen, but your words might make her do something sooner.

Good luck.

Salli

[Guest guest]

> She may not listen, but your words might make her do something sooner.

Ooh! Yeah, that.

Also here there are some free developmental ummm...check-up clinic type

places. You go and say, " Is everything OK? " and they say " Yup! " or

" Hmmm... " You could offer that as a " to ease your mind " thing.

-Sara.

who had Salli say some really good words that got Sara to do something

sooner.

[Guest guest]

I was counting on your free online dx, and you've come through!

The only problem with approaching her about any of this at all, even

innocent remarks, is that I know where she is, emotionally. She sees

something wrong, and some well-meaning yet horribly misleading pediatrician

has eased her mind. She is in the " <sigh> thank goodness my kids are okay,

let no man put asunder what my pediatrician has declared " stage. It's an

ugly stage to interrupt.

I have not seen the kids myself in months. Only Shaun did, this past

weekend.

Maybe that is what is next. I should go for a visit with the kids to see

for myself. I don't doubt for a second that I could recognize it in person.

It's just impossible to say any which way based on what I am hearing. It's

very possible I am just hearing the things i want to hear, and NOT hearing

all the other things that would claim otherwise.

(

But thanks, Salli.

Grace

Re: That friend of mine.....

> Grace:

>

> This is your online diagnostician speaking. You, a parent of children

with

> autism, know autism inside out. I think you are right to be concerned.

And

> Shaun knows what he is looking at also.

>

> I think I'd say something, but I don't know if it will be heard. Make is

> sound non-threatening and suggest they go for a county evaluation program.

> She may not listen, but your words might make her do something sooner.

>

> Good luck.

>

> Salli

>

>

>

[Guest guest]

Grace....I would definetely keep on eye on those girls. It sure sounds like

there is something going on...based on the info we have. It is so sad...yet

I hope that the mom is willing to face that there may be problems while the

kids are young and can get a lot of benefit from early intervention. Good

luck!!

Tamara

----Original Message Follows----

Reply-To: parenting_autism

To: " Parenting Autism Group " <parenting_autism >

Subject: That friend of mine.....

Date: Tue, 15 Jan 2002 16:56:57 -0800

Below is a post I wrote back in August. (Please read it before reading this

post, if you haven't already....)

Those same children, now five months later, are still not talking.

She can spend hours on the phone with me, and I will not hear much in the

background, unless someone fell or is cranky, and then I will hear crying.

No words yet. Not " Mommy " or any other variation of it... not " juice " ...

not anything.

It's a common Korean meal to pour soup over your rice and eat it, like

chicken noodle soup. One spoonful contains it all. These kids of hers will

not take rice that way. Rice needs to be just rice. Soup, they will eat,

but only sometimes, and rice in soup is not acceptable. My girls, on the

other hand, love

this, so I don't know if this means anything at all. Maybe just a fluke,

but it did sound like an alert to me.

Running... back and forth, back and forth.

Doors... real doors and cabinet doors.... open and shut, open and shut.

LIghts -- on and off, on and off, on and off.

Still shredding and eating paper..... or any other non-edible thing on the

ground. Picky as can be about food.

Wake up in the middle of the night for no reason.... hysterical laughter

sometimes, for no reason..... One of them climbs and climbs and climbs.

One day, while on the phone, the mom gasped and yelled, " Get off the

fridge! " It was a familiar phrase of mine not so long ago. They don't go

anywhere because her girls are nearly impossible to keep under control in

public. All of this is familiar.

Is behind other children, according to their mom. She is chalking it up to

twins now, which is also what I did. I have no intention of saying

otherwise, I just want to know if I should kill the bells in my head, or pay

attention when talking to her. Keep in mind that this friend, to this day,

refuses to believe anything is different about my children LOL.

She did mention it to her doctor, who informed her of " twinspeak " like mine

did me way back when. I hate it when doctors do that. If they had ANY clue

as to how rare twinspeak actually is - - - - - they would stop mentioning

it. Besides, twinspeak IS a language, and what she is telling her doc, and

what I told my doctor is that these kids have NO language. <sigh> She,

like me, was relieved to hear of this, as it seemed a valid explanation for

why these children are not speaking. 'They have a language of their own, OF

COURSE!!! "

Above is what I wrote several nights ago, and didn't finish.

Since then, Shaun went to pick up those twins' dad to go out on Saturday

night. He went into the house and spent 30 minutes there. Usually, he is

great about coming home and telling me about his entire night. That night,

I was busy painting the living room, and he didn't offer any information.

He seemed rather down, but I figured he was just tired. Last night, he

tells me that he saw the girls. I said, " Oh yeah! I forgot all about the

fact you had gone over there! So how are they doing? "

He hadn't seen them in about 5 months.

He looked down at the ground and said one thing, " They make no eye contact.

They never once looked straight at me, and honestly, I don't think they know

their names. "

It was like someone swung a bat into my stomach. Oh no, not again..... not

again. My face just flushed and lost color. It doesn't feel like it's

going to kill me, but it still hurts. I guess my wounds from my own

experiences have not healed enough to allow me to watch someone I care about

go through the same thing, without letting it get to me, and haunt me. And

to make matters worse.... I was resentful in my own way of her having twins

so soon after mine <as if she planned it or something> since I figured they

would be talking before mine. 19 months now... still not one word. I feel

horrid for thinking the thoughts I did.

So now what do you think? Am I reading too much into this or is there cause

for worry? If there IS a cause for worry.... what is a true friend supposed

to do? I want to help her. But I am POSITIVE she is not ready for me to

say anything. Like I said, this friend STILL will not accept that my

children are autistic. She is the friend who ALWAYS, consistently claims

that she thinks Madison is a genius, understands everything, and is just

" waiting to surprise " me. Oh, how I wish.....

Grace

Normal Speech Development

> There was a time, way back when, when I had memorized which milestone

> happened in what month, week or day.

> I recall none of that now, and know only about what isn't normal.

>

> That said - - can anyone tell me how much a 14 month old child should be

> saying? Do kids speak any words at age one?

> I ask, because my friend asked me that earlier today, and I believe she

is

a

> bit concerned. I was ashamed to admit that I didn't have a CLUE as to

> whether 14 month olds were supposed to speak. I think she is worred

because

> of my girls, since she has twins also. They don't say anything yet, and

in

> fact, are quite quiet.... eerily like Syd and Mad were at about that age.

> But for the love of God - - - it's not possible to have two sets of twins

in

> one circle of friends, and have all of them be autistic girls, is it??

>

> She has mentioned things in past conversations that have set alarms off

in

> my head. Spinning, shredding paper, and mouthing everything, amongst

other

> things. But a lot of things set off alarms in my head now, and

> besides - - - - one alarm means nothing. I don't think I'd be worried

> unless every alarm went off in my head, and it hasn't.

>

> Anyone?

>

> Grace

>

>

Grace

Mom to twin girls Sydney and Madison

Born 3/28/98

Wife to Shaun 1/11/97

Reply to: gracekeh@...

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[Guest guest]

, I have this site.

It IS a good site, except that it's a compilation of all the " twin problems "

out there, in the parents' version.

The truth is that TRUE twinspeak is rare, and mostly in identical twins on

the rare chances it happens. I think it was that 3% of ID twins actually

speak twinspeak. <not sure about the 3%...>

I know about 50 families with twins, both ID and Frats. Of those - - 6 had

sets that were not speaking by 18 months. All the others did speak by then.

Of the 6, 4 sets were dx'd with autism, and one set still has just a speech

delay dx. She refuses to delve further into it. The last set started

speaking at 22 months, thank goodness. So of the 50, we are pretty sure

it's a whopping 10% of us who have autistic children, which is a WHOLE LOT,

all things considered.

Grace

Re: That friend of mine.....

> grace! i only just skimmed this, but it looks real helpful. check it out

>

> Language Development in Twins, Triplets & Higher Order Multiples

> http://www.tqq.com/language.htm

>

>

>

> " Help! Jane! Stop this crazy thing! " - Jetson

>

>

>

[Guest guest]

Wow... good site to pass onto her when she's ready, Sara.

Thanks, I have it bookmarked!

Their hearing SEEMS fine. Like my girls, they can hear the Teletubbies play

from the other end of the house, and come running.

SPeaking of which, there was one freaky incident. My girls would have a

meltdown every time that tube mike thingie would come up to announce " Time

to teletubbies " or " time for tubby bye bye " . And the sun... the baby face

in the sun always freaked them out.

Guess at which scenes the younger child was wailing her lungs out?

Grace

RE: That friend of mine.....

> Grace,

>

> http://www.coping.org/earlyin/pdq.htm

>

> is a great list of warning signs. You could offer it to her as " I

remember

> you were asking about development & found this site... "

>

> It IS normal for twins to speak later, without " twinspeak " , and JUST late

> speech doesn't mean much. At 18 mos just no speech really doesn't mean

> anything.

>

> But they should know their names.

>

> Have you asked her about their hearing? Hearing problems can look like

> autism.

>

> Good luck hon.

>

>

> -Sara.

>

>

>

>

>

>

>

[Guest guest]

Grace, someone mentioned having their hearing checked. That's a good idea. A

hearing problem is much less threatening than autism. It might be a step in the

right direction and the doctors might be able to further it along.

Jake started with a hearing test when he was around 22 months. Unfortunately, I

switched peds right after, so not much was done. When Jake was 26 months, I

switched back to the former pediatrician. She called me and wanted to know if

Jake's speech was still delayed. It was, so she set Jake up with speech

therapy. That led to OT, state programs, school, and finally diagnosis. All

with just a hearing test.

DH also said to talk to the father if you or Shaun can. Often fathers pick up

that something is wrong quicker than the mothers. (That's been my observation

at least).

Good luck.

Janae

, 9, ADD

Jake, 6, autism

[Guest guest]

Grace,

I'm not sure you can do anything. :-(

BUT, that said, I had pretty much decided the docs must be right and was

fine when a woman asked me about something he was doing, and whether it 'struck

me'. I said no, and she said, " I think you should do some research on your own,

just to be safe. "

The next day, I KNEW he was autistic.

Could you be that subtle with her, or do you think she's totally closed off to

the idea of anything being wrong at all, no way no how?

Jacquie

[Guest guest]

> http://www.coping.org/earlyin/pdq.htm

>

I dug out my journals from when was 2.5 and took this test. He scored 47

out of a possible 66! If only someone had shown me that 3 years ago. <sigh>

Jacquie

[Guest guest]

In a message dated 1/16/02 1:35:09 AM Pacific Standard Time, Jacquie writes:

> I dug out my journals from when was 2.5 and took this test. He scored

> 47 out of a possible 66! If only someone had shown me that 3 years ago.

>

I just went there and looked at it.

I gave her a 47 also!

Hmm.

Some of that stuff doesn't apply anymore, obviously.

Barb

[Guest guest]

> > > http://www.coping.org/earlyin/pdq.htm

Mikey currently gets a 46. When I first tested him at 20mos he got a 28.

Some of the increase is just my recognizing behaviors for what they are;

i.e. he does not flap his hands in the usual sense but he flicks his fingers

in front of his eyes a lot, so I say 3 on hand flapping instead of 0.

But he had gotten up to the high 50's 2 months ago. Thank you, DHA.

-Sara.

[Guest guest]

> has eased her mind. She is in the " <sigh> thank goodness my kids

> are okay,

> let no man put asunder what my pediatrician has declared " stage. It's an

> ugly stage to interrupt.

Ah, I remember that stage.

A friend was telling me on the phone that loss of speech is a big red flag.

I responded, " The doctor knows he's lost speech. The doctor says he's fine.

I'll wait till he's 2 to worry. "

We hung up shortly thereafter, and I said to myself, " Woah. Since when do I

trust doctors so much? I am always reading and researching and making my

own conclusions and not depending solely on what the doctor says. "

Oh. Hello, denial.

Odd how just hearing those words come out of my mouth triggered so much...

If she's in denial there really isn't much you can do. You can encourage

and push and point things out and stick things under her nose, but it will

probably just piss her off.

Can you take the girls over there? Maybe point things out to her that they

do and say, " There, that's not normal. "

Actually it would probably be more constructive to explain them to her.

" See how Madison is spinning and spinning? That's a vestibular stimulation.

She does that because of her sensory integration issues. You can help that

by having her swing and jump and things like that. " I wouldn't comment on

her kids doing the same thing. I'd let her draw that conclusion on her own.

That way you don't upset her. I really made my SIL mad back in November by

pushing her too hard. That didn't help anybody. It's a hard place to be

in, a hard line to find.

It might not help. But, like Salli said, you might help her do something

sooner.

18 mos IS very young.

BYW I did not mean to sound like a snooty twin expert when I said later

speech is normal for twins. I'm not an expert, that's just something I've

read here and there, that it is more common for twins to talk a bit later,

and it's nothing to worry about. But you're the twin expert.

-Sara.

the non-twin-expert

[Guest guest]

>>>>>>>I dug out my journals from when was 2.5

and took this test. He scored 47 out of a possible 66!

If only someone had shown me that 3 years ago.

>>>>>Putter would have got a 59. OUCH!<<<<<<<<

scored 60!!!!

Tuna

=====

" Normal is just a setting on the washing machine. "

Whoopi Goldberg

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[Guest guest]

> > > > http://www.coping.org/earlyin/pdq.htm

Ran it on for age 3 yrs and then for age 8 yrs...at 3 he

scored a 20...at 8 he hits 60.

SIGH...

Raena

[Guest guest]

Putter's current score is a 25. Now that impresses me and I did not go easy

on him in any way.

Not bad from a 59.

Salli

[Guest guest]

All I can say to this Grace is, just be there for her if/when the bat hits

HER in the stomach.

There really isn't anything else you can do. If she's not ready, she's not

ready.

Penny :-(

[Guest guest]

> > > > http://www.coping.org/earlyin/pdq.htm

>

> Mikey currently gets a 46. When I first tested him at 20mos he got a 28.

> Some of the increase is just my recognizing behaviors for what they are;

> i.e. he does not flap his hands in the usual sense but he flicks his fingers

> in front of his eyes a lot, so I say 3 on hand flapping instead of 0.

>

> But he had gotten up to the high 50's 2 months ago. Thank you, DHA.

>

> -Sara.

What a drop, Sara! What about ATEC? Do you have a previous score you could

compare him to now? What a difference!!!

And a note of MORE hope...as I said, I went back and tested as if he were

Mikey's age and he scored 47. I just went back and did him today. 12.

Jacquie

[Guest guest]

> > Mikey currently gets a 46. When I first tested him at 20mos he got a

28.

> > Some of the increase is just my recognizing behaviors for what they are;

> > i.e. he does not flap his hands in the usual sense but he flicks his

fingers

> > in front of his eyes a lot, so I say 3 on hand flapping instead of 0.

Sara:

I failed to recognize hand flapping things too, just exactly the way you

describe. Putter did not " flap. " But he did a lot of hand things, flicking

his fingers and staring at them oddly. I just didn't know that was what

they meant.

Salli

[Guest guest]

>

> If she's in denial there really isn't much you can do. You can encourage

> and push and point things out and stick things under her nose, but it will

> probably just piss her off.

Sara.

That is what I'm thinking too, you know?

I mean... I know it would have PISSED ME OFF TO JUPITER AND BACK if someone

had approached me when I had JUST been set to rest by my DOCTOR. And if

someone dared, all I have to say is that this person best have a " Ph.D "

after his or her name, AND have it be in the psych field of some sort, OR

ELSE.

I am none of the above.

>

> Can you take the girls over there? Maybe point things out to her that

they

> do and say, " There, that's not normal. "

Actually - that is a great idea. I considered observing them for my own

peace of mind's sake, but hadn't thought of letting her " witness " mine.

Great idea.

> > BYW I did not mean to sound like a snooty twin expert when I said later

> speech is normal for twins. I'm not an expert, that's just something I've

> read here and there, that it is more common for twins to talk a bit later,

> and it's nothing to worry about. But you're the twin expert.

I didn't think you sounded snooty. What you thought is actually what most

people think - including doctors. The evidence just states otherwise,

that's all. If I sounded like I thought you were snooty or something, that

is probably because looking back, i could have saved a lot of denial time if

some doctor had just TOLD ME that I have cause to worry, indeed, you know?

Twins DO tend to talk later. Just not NOTICEABLY later in most cases. And

I am nowhere NEAR the twin expert when it comes to twin facts. I just know

how to live with twins, and now I know about twins v. autism. No more than

that. )

Grace

[Guest guest]

> some doctor had just TOLD ME that I have cause to worry, indeed, you know?

> Twins DO tend to talk later. Just not NOTICEABLY later in most

> cases. And

What do you mean by noticably? (Mikey was nearly a twin. My God, can you

imagine? Oh. Yes. YOU can.)

With JUST no speech, the docs I saw about Mikey were all comfortable waiting

till he was 2 before we did any kind of testing or intervention.

I made a list from that web site (thank you, Salli) and took it in to my

ped. " Does not point or wave. Sometimes appears deaf; does not respond to

name. Twirls. Spins and lines up toys. Walks on tiptoes. " & c. She

looked it over, looked me over, and used some long phrase with the word

" autism " in it somewhere.

Complete tangent -- That is the only word I remember. Odd for me; usually

I remember things word-for-word, even photographically. For tests I used to

scan my textbooks and then, when I got to a question whose answer was in the

book, I would mentally flip to that page and literally read it. I didn't

have to remember the facts; looking at the page once was sufficient. I'm

not that good anymore; I'm out of practice. But, for example, it REALLY

REALLY REALLY BOTHERS ME that, at the beginning of LOTR, Sam says, " Don't

you LOSE him, Samwise Gamgee. And I don't mean to. " And at the END he

says, " Don't you LEAVE him, Samwise Gamgee. And I don't mean to. "

You did not sound like you thought I was being snooty; I just re-read my own

post & saw it could be taken that way.

-Sara.

[Guest guest]

> DH also said to talk to the father if you or Shaun can. Often fathers

pick up that something is wrong quicker than the mothers. (That's been my

observation at least).

Janae -

Really?

I never noticed such a thing. And I know in THIS house - I had to convince

Shaun that something was wrong. I'll bet that if I didn't see something was

wrong with my girls to this day, Shaun would think " oh, they are just slow

talkers..... my second cousin's mother's grandfather was like that,' or

something.

It took him a long time to SEE something was not right about his " perfect

munckins. "

He used to get so angry when I would point out, 'Well, look at that - that's

not normal! " It was like he suspected me of trying to make HIS children

into these outcasts with flaws. ( Those were the only times I recall

when I would jump out of denial to point out this and that - - then jump

back in after the fight... happy to believe what my husband just declared as

'truth' - - - " They are perfect~~! "

Well, and he's kinda right. They are rather perfect. Just also ratehr

annoying, irritating, adorable and so totally autistic, that's all.

Grace

[Guest guest]

> The next day, I KNEW he was autistic.

>

It was the same way with me, Jacquie. At about 15 months of age, my friend

told me straight out that she thinks Madison is autistic. I was SEETHING

angry, but didn't express myself since i knew she was just concerned.

I did research that night because her e-mail would not leave my head.

And within 15 minutes - - - there was no doubting it. There was no room for

doubt. There was one picture of a boy, Liam was his name <I still

remember!!!> and he was standing on something to reach for the TV. Madison.

A picture of his face.... blank, yet alive.... present, but not really....

gorgeous, but different. Madison.

Handleading...tantrums.... odd. Madison.

And this happened with every single site I visited. Every single one had

Madison in it.

> Could you be that subtle with her, or do you think she's totally closed

off to the idea of anything being wrong at all, no way no how?

>

I know she is not ready for ME to say anything.

But she is calling me less these days. Much less. I am quite sure I

haven't pissed her off in some way, and something keeps on telling me that

she is starting to " see " for herself. I don't know if she is thinking

" autism " but I think she is more at the " this is not really the norm, even

for twins " stage.

Of course, there is still a distinct possibility that I am reading way too

much into this! I sure hope so.....

Grace

[Guest guest]

>>>>The next day, I KNEW he was autistic.<<<<

I vivdly remember when I realized was Autistic.

We were in the middle of all those appointments with

all those specialists when a friend mentioned that

reminded him of another little boy, Yari, who

was Autistic. Then I met Yari. I was floored. Yari

had the same mannerisms. The same way of talking (or

not talking). The same high pitched " eee eee " sound

when he was happy. Looking at Yari, I knew I was

looking at my son. I went home and told Doug

was Autistic.

That was 3 years ago. Seems like yesterday.

Tuna

=====

" Reality is nothing but a collective hunch. "

Lily Tomlin

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