Re: autism eval

[Guest guest]

My question is what do you feel her IQ level is? When was evaluated as 54

here in Hawaii (when it had been 69-70 in Missouri) I knew something else was

going on. As to the part about being more social than autistic and less social

than Down's, that's the " nature of the beast " with our kids. But I think they

get hung up on the fact that severe mental delays sometimes mimic autistic

behavior. I don't see that. when I see children who are severly delayed

mentally, they are still more social than my son started out. And severly

mentally delayed children do not lose what they had, they just take longer to

acquire the skill. If this were my child, I would push for the actual label of

asd because it opens up more doors. You are qualified for more services and

they don't teach to the IQ. What I mean by that is a mentally delayed child

that tests with an IQ of 36 would more than likely have that IQ level. An

autistic child that TESTS with an IQ of 36 could actually be closer to 70 (I use

70 because that's the border of normal, 70-120 - 70 being the c and d student).

When knows something, he sometimes won't acknowledge that he knows it

because he assumes since HE knows he knows it, I should as well. Therefore he

assumes that I'm playing with him by PRETENDING I don't know he knows it.

That's called Theory of Mind: they don't realize that the thoughts running

through their mind are not the same as the thoughts running through someone

else's mind.

Loriann

Who's feeling a little philosophical today.....

[Guest guest]

I can tell you what I get, what doesn't qualify for, but you could ask for

and what I've heard others get.

doesn't qualify for Physical therapy, Occupational therapy.

He was evaluated for Sensory Integration, but they said since I homeschool,

there wasn't much they could do that I couldn't.

gets language therapy (which is different than speech therapy - speech is

for the formation of words and sounds, language is how to put words together in

a sentence structure), intensive home therapy (a therapist comes to our house 3

times a week for a total of 40 hours a month), We quailified for a therapuetic

aide to go with him to Sunday school and church, but they can't find one at the

moment. I've heard of people getting a Therapeutic aide for up to 40 hours a

week, but it's usually no more than 20. And we qualify for respite care (our

psychiatrist really pushed for this one), but since they don't have any workers

currently available, they reimburse us $120 a month to pay someone of our choice

anywhere between $5.15 and $10 an hour - remembering that the more we pay, the

less hours we get. There is horseback therapy, don't remember the exact phrase

they use. I just found out that they do have that in Hawaii, I hadn't asked

because I didn't expect to get it. You can also request that the home therapist

teach you behavior modification techniques or that they send you to training.

Everyone in the school system knows (or at least should) that any behavior

approach should be consistent with all care providers. So if the school is

doing behavior modification techniques that they don't teach you, it's not going

to work overall, because the home environment is not consistent with school.

That's about all I can think of off the top of my head. If anyone else can add

to it feel free.

Loriann

Wife to Dewight

Mom to , 10 years, Down Syndrome, Autistic Spectrum Disorder, ADHD,

Oppositional Defiant Disorder

And , 15 months and Strong Willed

[Guest guest]

Thanks. I've been doing a Bible study on spiritual gifts, and my teacher said I

have the gift of words of knowledge.....I don't think I have the gift of teacher

though, so I know all this stuff but can't explain it when I have to.......

It's kind of like jack of all trades and master of none....

's therapist calls me a rennasiance woman.....

Loriann, who's looking for the rock to kick and say, aw shucks. . . .

Wife to Dewight

Mom to , 10 years, Down Syndrome, Autistic Spectrum Disorder, ADHD,

Oppositional Defiant Disorder

And , 15 months and Strong Willed

[Guest guest]

Well, that's what the I stands for in IEP. We don't get with the teachers every

year to set a Group Educational Program, or a Down's Educational Program, we

work up an INDIVIDUALIZED Educational Program.

That's what bugged me so much about one of 's former teachers when she

said, " I don't use sign with any of my other students. " I wanted to grab her

around the throat and tell her " MY SON ISN'T EVERY ONE OF YOUR OTHER STUDENTS.

He's . "

Sorry, think I'm getting a migraine.......

I always get real moody (read *itchy) right before I get one.....

Loriann

Wife to Dewight

Mom to , 10 years, Down Syndrome, Autistic Spectrum Disorder, ADHD,

Oppositional Defiant Disorder

And , 15 months and Strong Willed

[Guest guest]

That's not being insensitive....I'm not really concerned with what works for

other kids, unless I try it and it works for , too. We all want what's

best for our kids. The only benefit from knowing a lot of techniques is so that

you can try a lot of different techniques or a blend of several until you do

find what works.

Loriann

Wife to Dewight

Mom to , 10 years, Down Syndrome, Autistic Spectrum Disorder, ADHD,

Oppositional Defiant Disorder

And , 15 months and Strong Willed

[Guest guest]

You go get 'em, Carol!

Loriann

[Guest guest]

Carol,

Is it in her IEP that she be taught sign language, and that everyone who has

contact with her know sign language and her interpretation of the sign (

could sign when he was 5, well actually started at 2-1/2, but he didn't do it

exactly right, one had to know his proximation of the sign to understand him).

was a behavior problem (I was going to say real stinker, but you get the

idea) before he could communicate his needs and wants. We had to start with

concrete things that we could hand him and do the sign. I really don't think he

knew that all this noise we make was communication until we introduced him to

sign language. But like you said, it all has to be in the IEP, and even then,

they'll try to get away with not using it.

Don't feel bad about being easy in the past. I was the same way when I started

this. I figured the teachers knew better than I did because their job was to

teach special needs kids. spent the first 7 months were here in school,

then I homeschooled over summer and he made great progress,

And now I have to go,,,,mom in law is calling.

Loriann

Wife to Dewight

Mom to , 10 years, Down Syndrome, Autistic Spectrum Disorder, ADHD,

Oppositional Defiant Disorder

And , 15 months and Strong Willed

[Guest guest]

Carol,

We just finished 's IEP earlier this month. It was a Triannual and I

had requested all of the testing be updated, with particular emphasis on a

Non-Verbal Assessment and an Functional Behavior Analysis. Of course, a

Psyche report was included. The Psychologist (and use the term loosely) said

the same thing about ...that his " autistic tendencies and behaviors

are more likely related to severe to profound developmental delays..... " He

then went on later in the report to say that the " regression and loss of

skills is typically seen in autism. " I told him [at the IEP] that if I

understood him correctly, he was telling me that did NOT have Autism.

He said that was correct. I told him that #1) I thought that was extremely

interesting, considering that at least 4 different doctors, 2 whom were

considered experts in the field of Autism, had diagnosed with Autism

as young as 6 yrs. #2) I told him he couldn't have it both ways. Either he

DOES have Autism and that accounts for the regression of skills or he DOESN'T

have Autism. He sort of stuttered around and said something about his severe

delays.....in other words, I got the " Mother in Denial " speech! There is no

doubt in my mind or in anybody else's mind who is familiar with Autism, that

does have the dual dx. The funny thing was that everybody else at

the meeting had already assumed that he has DS/ASD and prepared their

reports/recommendations related to that. You have to stick to your guns when

you know you are right. So many times, educators, etc. are motivated by

finances, rather than what's best for the child. Don't back down....make

them provide the services/program that you feel is right for your daughter.

Terry

Mom to (age 13)

[Guest guest]

,

I absolutely agree. I used to get so tired of teachers and baby sitters telling

me all the bad things did. I know he's a handfull (he's better now, but

before the diet he was a little devil), I don't need to hear it everyday. We

had a school in Missouri (the one I brag on) that had a rule that the

communication book sent home everyday could only have positive things written in

it. I'm sure there were days when they really fished to find something positive

(even washed his hands or something). She also had a system of x's.

got an x for each job he did and when he got all his x's he got to go

outside or do something he wanted to do. For " good job's " she would snap her

fingers right beside his ears. Not knowing he was autistic at the time, just

that he liked it and it motivated him. Wish I still had that teacher.

Well, I'm going to sign off before I get too nestalgic......

Loriann

Wife to Dewight

Mom to , 10 years, Down Syndrome, Autistic Spectrum Disorder, ADHD,

Oppositional Defiant Disorder

And , 15 months and Strong Willed

[Guest guest]

thank you for replying, you mentioned that having asd you might qualify for

more services, can you tell me about other services available? I want to be

prepared for this meeting and need all the resources I can get.

Thanks,

Carol

[Guest guest]

In a message dated 10/17/00 6:55:59 PM Eastern Daylight Time,

hsmyangel@... writes:

<< What I mean by that is a mentally delayed child that tests with an IQ of

36 would more than likely have that IQ level. An autistic child that TESTS

with an IQ of 36 could actually be closer to 70 (I use 70 because that's the

border of normal, 70-120 - 70 being the c and d student). When knows

something, he sometimes won't acknowledge that he knows it because he assumes

since HE knows he knows it, I should as well. Therefore he assumes that I'm

playing with him by PRETENDING I don't know he knows it. That's called

Theory of Mind: they don't realize that the thoughts running through their

mind are not the same as the thoughts running through someone else's mind.

Loriann

Who's feeling a little philosophical today.....

>>

Okay Loriann, go get that degree so you can come be Seth's therapist! And

please accept this praise with a humble thank you! LOL Yes, I'm a guilty

feeling Catholic too! LOL

Gail

[Guest guest]

well I think you expressed alot of knowledge and I appreciate your help. I

read your posts and I think you very definetly have the gift of teacher.

Carol

[Guest guest]

In a message dated 10/17/00 7:31:20 PM Eastern Daylight Time,

hsmyangel@... writes:

<< Thanks. I've been doing a Bible study on spiritual gifts, and my teacher

said I have the gift of words of knowledge.....I don't think I have the gift

of teacher though, so I know all this stuff but can't explain it when I have

to.......

It's kind of like jack of all trades and master of none....

's therapist calls me a rennasiance woman.....

Loriann, who's looking for the rock to kick and say, aw shucks. >>

You're welcome! See how easy and painless that was! LOL

Gail

[Guest guest]

Terry,

Thanks for responding and I know what you mean about the mother in denial

speech. I don't get it from the doctors, in fact her doctors have told the

teachers that they believe I have a very good understanding of down syndrome

but I get the speech from the teachers all the time. I also hear things like

well what if your idea doesn't work or what if she never talks etc. My

answer to them is well that's ok as long as I know we have done our very

best. I am so tired of hearing how anything that goes on in Trisha's life is

typical of Down Syndrome and yet I have found with Trisha that there is

nothing typical about her! I like to use the expression that Trisha is a

BUI (beautiful unique individual)

Carol

[Guest guest]

I am beginning to wonder if the I in IEP stands for indirect instead of

individual. I hear so often that the technics they use does so well with the

other kids in the class room and that therefor it should do well for Trisha,

I don't mean to sound insensitive but I'm not concerned what works for the

other kids, I'm only concerned what isn't working for Trisha. She isn't the

other kids and if the program was working so well, why is there still

regression?

Carol

[Guest guest]

I'm afraid that in order to avoid confrontations I have allowed the teachers

to have the last say and most of the time it was against my better judgement,

now I'm tired of doing things their way only to hear how she is continuing

to regress, I will not be passive in her IEP decissions any more. In the

past I have not insisted on things being put in her IEP because the teachers

told me they were doing them anyways and they really didn't need to be in the

IEP, then I find out they are only doing them when it suits them so now Moma

is getting tough and will be insisiting on things being included in the IEP

that should have been there along time ago.

Carol

[Guest guest]

Trisha seems to learn best with one-on-one, she loves music and tries hard to

sing along with the songs. She is a very visual child, she loves watching

disney full featured movies (little mermaid, tarzan, cinderella etc) She

loves to sit and touch my eyes and says the word eye, she touches my nose and

says shue ( I think that is because when she was little and had so many runny

noses that we were always asking her if she needed a tissue, now shue means

nose for her, just like she calls a foot a shoe and a shoe and shoe) She

loves to be praised and we do alot of clapping when she does something we

ask. If I sit down and we try counting she gets upset, but if I sit down and

make a sing-song of the counting she seems to like that better. We play

games like where is trisha, or where is Trisha's foot, where is trisha's

hand. I will sign to her that Trisha is a pretty girl and she tries to sign

back the same th ing. When we put food on her plate we count but again if I

just sit down and try counting with her she gets upset. As for education,

right now, I would be happy with her just being able to use functional

language, what difference is it if she knows the color green if she can't

let us know that she knows it. I can't help but think there are many things

she is learning but we don't know because she doesn't have the means to

communicate to us to let us know what she is learning. She can work just

about any vcr, dvd player, tv and stereo without us telling her how. She

understand that in order for the equipment to work it has to be plugged in,

(yes we have to constantly watch her, or she will try to plug everything she

sees in the outlets)

The thing is, how do I translate that into something the teachers can work

with or even understand?

Carol

[Guest guest]

In a message dated 10/17/00 8:02:09 PM Eastern Daylight Time,

Imaddenmom@... writes:

<< I told him [at the IEP] that if I

understood him correctly, he was telling me that did NOT have

Autism.

He said that was correct. I told him that #1) I thought that was

extremely

interesting, considering that at least 4 different doctors, 2 whom were

considered experts in the field of Autism, had diagnosed with Autism

as young as 6 yrs. #2) I told him he couldn't have it both ways. Either he

DOES have Autism and that accounts for the regression of skills or he

DOESN'T

have Autism. He sort of stuttered around and said something about his

severe

delays.....in other words, I got the " Mother in Denial " speech! >>

Go Terry! Can you come with me to my next meeting? LOL

Gail

[Guest guest]

In a message dated 10/18/00 12:14:45 AM Eastern Daylight Time,

jk-harding@... writes:

<< She's doing great by the way. Today I tried to turn off the tv and have

her

do an alphabet puzzle with me. Well, of course she didn't want to. I kept

trying to make it look fun and said please come and help me. No use. She

just wanted her tv. Then I said, ok, put the puzzle away and you can watch

tv again. Lo and behold, she ran over and put the whole thing together as

fast as she could, put it back on the shelf and then turned her tv on again.

She's very smart!!!

>>

Way cool !

Gail

[Guest guest]

Carol:

Do you know what it is that you want for your daughter?

Can you list the ways your daughter learns best?

Can you list things that your daughter may be interested in learning?

Check out the book, " Teaching Activity Schedules for Children with Autism "

from Woodbine House. There's so much " academic " that can be learned from

using schedules...and a lot of independence to go with it.

Make sure you go in with a clear idea of what you would like to see.

Sometimes it helps to have sample PLOPS and goals written to let them know

you've done your homework.

There is a website for a group called " OASIS " that has a lot of good info.

search for them using or altavista and you'll get their site. (the

" A " Stands for Aspergers, but don't let that bother you--there's great IEP

ideas there).

I know exactly where you are. Been there.

Let us cheer you on. But get specific about what an education should look

like for Trisha so they can have an idea--they don't learn quickly.

j

[Guest guest]

YES! INSIST! I have started insisting on every little thing. I even had

it added to the iep about what the teachers could and could not put in

weekly reports home to me. One of the things I said I never wanted to see

again was, " refuses..... " I told them that they can say, " We are

still working on...... " or " chose to do.......instead of what we had

planned. " But no more " refuses to..... " I'm sick of hearing that!

She's doing great by the way. Today I tried to turn off the tv and have her

do an alphabet puzzle with me. Well, of course she didn't want to. I kept

trying to make it look fun and said please come and help me. No use. She

just wanted her tv. Then I said, ok, put the puzzle away and you can watch

tv again. Lo and behold, she ran over and put the whole thing together as

fast as she could, put it back on the shelf and then turned her tv on again.

She's very smart!!!

Re: autism eval

> I'm afraid that in order to avoid confrontations I have allowed the

teachers

> to have the last say and most of the time it was against my better

judgement,

> now I'm tired of doing things their way only to hear how she is

continuing

> to regress, I will not be passive in her IEP decissions any more. In the

> past I have not insisted on things being put in her IEP because the

teachers

> told me they were doing them anyways and they really didn't need to be in

the

> IEP, then I find out they are only doing them when it suits them so now

Moma

> is getting tough and will be insisiting on things being included in the

IEP

> that should have been there along time ago.

>

> Carol

>

>

>

>

>

[Guest guest]

Hi Carol. Trisha sounds a lot like . She loves movies!!!!!!!!

is beginning to talk a lot though, but hardly anyone can understand

her. At what age did Trisha begin losing her skills? I haven't noticed

that has lost anything yet, she's just not picking it up as fast as I

had hoped. And I worry that she will lose skills. I feel for you and know

what you're going through.

Re: autism eval

> Trisha seems to learn best with one-on-one, she loves music and tries hard

to

> sing along with the songs. She is a very visual child, she loves

watching

> disney full featured movies (little mermaid, tarzan, cinderella etc) She

> loves to sit and touch my eyes and says the word eye, she touches my nose

and

> says shue ( I think that is because when she was little and had so many

runny

> noses that we were always asking her if she needed a tissue, now shue

means

> nose for her, just like she calls a foot a shoe and a shoe and shoe) She

> loves to be praised and we do alot of clapping when she does something we

> ask. If I sit down and we try counting she gets upset, but if I sit down

and

> make a sing-song of the counting she seems to like that better. We play

> games like where is trisha, or where is Trisha's foot, where is trisha's

> hand. I will sign to her that Trisha is a pretty girl and she tries to

sign

> back the same th ing. When we put food on her plate we count but again if

I

> just sit down and try counting with her she gets upset. As for education,

> right now, I would be happy with her just being able to use functional

> language, what difference is it if she knows the color green if she can't

> let us know that she knows it. I can't help but think there are many

things

> she is learning but we don't know because she doesn't have the means to

> communicate to us to let us know what she is learning. She can work just

> about any vcr, dvd player, tv and stereo without us telling her how. She

> understand that in order for the equipment to work it has to be plugged

in,

> (yes we have to constantly watch her, or she will try to plug everything

she

> sees in the outlets)

> The thing is, how do I translate that into something the teachers can work

> with or even understand?

>

> Carol

>

>

>

>

>

[Guest guest]

carol really work with sign language even if they are not exact it is a great

form of communication that lowered buddy s frustration level way down when he

could make us understand what he was saying. hopefully the school has teachers

and aides who sign this has not been a problem so far for us.he also did not

lose skills so much as slow way down. he loves music sesame st. comfy couch and

church songs though he hardly ever makes a full service!hang in there!carole

Harding <jk-harding@...> wrote:

Hi Carol. Trisha sounds a lot like . She loves movies!!!!!!!!

is beginning to talk a lot though, but hardly anyone can understand

her. At what age did Trisha begin losing her skills? I haven't noticed

that has lost anything yet, she's just not picking it up as fast as I

had hoped. And I worry that she will lose skills. I feel for you and know

what you're going through.

Re: autism eval

> Trisha seems to learn best with one-on-one, she loves music and tries hard

to

> sing along with the songs. She is a very visual child, she loves

watching

> disney full featured movies (little mermaid, tarzan, cinderella etc) She

> loves to sit and touch my eyes and says the word eye, she touches my nose

and

> says shue ( I think that is because when she was little and had so many

runny

> noses that we were always asking her if she needed a tissue, now shue

means

> nose for her, just like she calls a foot a shoe and a shoe and shoe) She

> loves to be praised and we do alot of clapping when she does something we

> ask. If I sit down and we try counting she gets upset, but if I sit down

and

> make a sing-song of the counting she seems to like that better. We play

> games like where is trisha, or where is Trisha's foot, where is trisha's

> hand. I will sign to her that Trisha is a pretty girl and she tries to

sign

> back the same th ing. When we put food on her plate we count but again if

I

> just sit down and try counting with her she gets upset. As for education,

> right now, I would be happy with her just being able to use functional

> language, what difference is it if she knows the color green if she can't

> let us know that she knows it. I can't help but think there are many

things

> she is learning but we don't know because she doesn't have the means to

> communicate to us to let us know what she is learning. She can work just

> about any vcr, dvd player, tv and stereo without us telling her how. She

> understand that in order for the equipment to work it has to be plugged

in,

> (yes we have to constantly watch her, or she will try to plug everything

she

> sees in the outlets)

> The thing is, how do I translate that into something the teachers can work

> with or even understand?

>

> Carol

>

>

>

>

>

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[Guest guest]

That's what I meant by having people who are proficient in HER sign language.

was the same way. He didn't do it perfectly. I didn't expect him to do

it perfectly, he was commnunicating and that was the key, not that he did the

sign so another deaf person off the street could understand him. I knew sign

wasnt' going to be his main form of communication, but a road in to speech.

Loriann

[Guest guest]

Carole,

Trisha seemed to start losing her skills the second year she was in school.

Before she started school she was saying moma, up, baby, bye, she said

aproximation of lay down (more like ay oown but we understood her) I know

that wasn't alot of words but it was a start, we also had her eating with

both fork and spoon depending on the food, after going to school they

insisted on her eating with a spoon because they said they thought that was

better for her , I finally insisted that they allow her to use the

appropriate untensil, how was she going to learn if they didn't allow it.

Their believe was that one day she might stab someone with the fork, well she

never did or has, she knows what the fork is used for. I also informed them

that she could just as easily poke the spoon in someones eye as she could

stab them with a fork. She never showed any tendancy to do either. I

sometimes wonder if they could get by with it, would they have our kids

eating with their fingers but then if you wanted to really go over board they

could poke with fingers too. Trisha had been eating by herself long before

she started school and I kept getting reports that she couldn't feed herself,

when I went down to observe her eating I found out why, everytime she picked

up the spoon to eat they kept taking it away and re-arranging it in her hand,

she got so frustrated, I asked them why they did that and they said it was

because she wasn't holding the spoon the right way and they wanted her to

hold it correctly. I told them if she was able to get food to her mouth the

way she was holding it, then leave her alone, at least she was feeding

herself her way and with their way, she was being fed.

I also noticed her signing was regressing, again when observing the teacher,

they would hand-over-hand sign with her and she would get upset and refuse to

sign, at home we just sat in front of her showing her the sign and saying the

word and she would attempt to sign, she also signed more at home than she did

at school. I have come to the conclusion that Trisha does not do well with

being expected to do something on demand. I believe that we let her do

things her way so at least she is doing it and then work on correcting once

she is familiar with the signs. Maybe I am wrong in this but if you keep on

demanding her to do it your way she just shuts down and refuses to do it, so

to me, Ifeel it's better to let her try her way and then keep showing her the

correct way when you sign back and she will eventually change (which is what

she has done with signing the word hurt, it took me several months to get her

to sign it correctly but I didn't demand, just kept showing her and finally

one day she did it correctly and has been doing so at least at home ever

since)

Carol