Re: my 5yr old son w/ds@autism?

January 15, 2001

Hi ,

What state are you in?

Terry

Mom to , 13 yrs.

January 15, 2001

Hi :

Where are you from? That makes a difference.

Can you get copies of the GARS and vineland scores? Make sure you get full

reports.

If you want the district to pay for an outside assessment, that's one

process. If you want to just go do it, that's another....

What changes do you want? Although there are some supposed services that

are available for kids with autism and ds, in **theory** the teaching

strategies should be considered for a*all* students. So...ask yourself what

it is that your son does that makes you think your changes will have a more

effective outcome than if they aren't made...regardless of the dx. In the

end, the dx is just a label; it is sommetimes worth pursuing for lots of

reasons including increased respite services or personal care assistants in

some areas. BUT, in theory, the IEP should be tailored to the child.

If the child falls within the autism spectrum, *why* won't they give a

label of autism? If it's just because of Down syndrome, we can load you up

with research articles suggesting that is an antiquated way of thinking. If

it's because they don't score him within the autism spectrum with the GARS,

then there's more to deal with.

Give us a few more details so we can dig in and help you--I know folks are

willing and ready. It doesn't sound like you're in a very good place

right now....and I " m really sorry you are having to fight so hard. Hang in

there.

Thanks!

Joan

At 12:48 AM 1/16/01 -0000, you wrote:

>I need some help on how to appproch a ppt for iep. My son is showing

>more and more characteristics of autism or pdd. The school system is

>not cooperative. what a suprise. I want to implement some changes.

>They are doing the cars and the vineland, but won't diagnosis. I need

>to get the dianosis for the changes. Who do I go to. most of the

>doctors, specialist i spoke to won't touch it because of the dual

>diagnosis. I need support and help. My son is 5 years old and I know

>early intervention is detrimental. Thanks.

> lisa-mom of 5 sons. 7,6,5,3,and1

>

> http://www.onelist.com/community/

>

January 15, 2001

In a message dated 1/16/01 3:38:13 AM Eastern Standard Time,

Imaddenmom@... writes:

<< Hi ,

What state are you in?

Terry

Mom to , 13 yrs.

>>

Oh, sorry. Someone new? Isn't there another too? Hi new ! LOL

I'm Gail, who has gotten very little sleep lately and because of that, my

brain is mush. LOL Welcome. :-)

Gail, Mom to; Seth-4 DS/ASD/PDD/PICA, jo-8, Becky-10, -23, Jen-25,

Grandma to Errick-4

and wife to -my hero

January 15, 2001

We are kinda in the same situation. Trisha is 8 and was tested for autism

and found to meet the criteria for Autism. But the school says they aren't

sure if the test is correct because of her having down syndrome. They want

to do another test. The first test was done by the school. The one reason

they say that have doubts is that she is friendly to some people. I agree

that the IEP should be tailored to the child but to be honest even when they

write the IEP for the individual child they don't always follow it. The

other thing I noticed is that for instance, unless you have specific dx's

they don't tend offer as much assistance (ie: an aid, assistive tech, etc.)

One of my concerns this year is that Trisha has been wandering off from her

class or group. When I expressed my concerns over this I was told that they

weren't overly concerned, Trisha knew what she was doing. She may know that

she is leaving the group but she doesn't know what could happen when she is

away from the group. The other day I received a note home saying that Trisha

left the group and hid in the music room. They were in PE class at the time

and music is not next door. When I questioned about this I was further told

that not only did she leave, she closed the door to the music room and turned

out the lights. Since school has started this year, she has wandered off

about 5 times, not far but still it's unsettling to know she is getting away

from the group. She actually got out the door of the school once. They

complain that she is noisey, when I asked them to explain that, I was told

she makes lots of humming sounds. I spoke with her pediatrician and he

thinks that they aren't challenging her enough, when I asked the school about

that, I was told that Trisha was very low functioning and they don't want to

overload her. She is having other behavior problems as well at school and at

home, they put in into a lower function group this year for 1/2 the day, this

is the first year that we have had reports of her wandering, fighting, crying

etc. The school said that she is just testing us all and not to worry. The

doctor says she is bored and that they need to challenge her more. I kinda

think the doctors right, I believe that because Trisha is non-verbal, that

the school just thinks she doesn't know something when I really believe she

just doesn't have an appropriate way to let them know. I'm sorry this is so

long, but I would really like some input on what you think I should do next.

Also, her doctor and I, review her IEP's for the last 3 years and found that

little if anything had changed in the IEP's. I went to school to observe her

class and we went to the computer class, Trisha had trouble using the mouse

and when I asked about this, I was told that they had been working with her

for 3 years and have not gotten any further with her on using the mouse. I

asked why they hadn't considered an alternative method for using the computer

and the reply was that they didn't think it would help. At home she loves

the computer and no she can't use the mouse but we help her anyway we can and

are teaching her to use the arrow keys when possible. She likes to point to

the pictures on the screen and I can't help but wonder if a touch screen

would be appropriate for her. So to get back to the ds/autism dx's, in our

case it might help to get her more alternative instruction and more safety

measures taken.

Carol

Trishasmom

She's not typical, she's Trisha!

January 16, 2001

In a message dated 1/16/01 8:50:46 AM Eastern Standard Time,

gboughton@... writes:

<< I will continue to advocate for Ted to be accepted for who

he is in this society without being segregated.

Gail >>

Gail,

I love the way you worded that! :-)

Gail

January 16, 2001

Hi Gail...

So...did you get some sleep last night?

Terry

January 16, 2001

<<. The school said that she is just testing us all and not to worry.

The

doctor says she is bored and that they need to challenge her more. I

kinda

think the doctors right, I believe that because Trisha is non-verbal,

that

the school just thinks she doesn't know something when I really believe

she

just doesn't have an appropriate way to let them know. I'm sorry this is

so

long, but I would really like some input on what you think I should do

next.

Also, her doctor and I, review her IEP's for the last 3 years and found

that

little if anything had changed in the IEP's>>

Hi Carol,

I agree with your doctor. I have had numerous people tell me that

Ted's recent environment is not challenging enough. Ted does not

display behavior that we don't want when he is sufficiently engaged

in an activity that connects to him. His behavior deteriorated in the

SPED room because he was not being listened to. Ted's IEP would

remain the same also from year to year! I think we have now written

a fairly decent IEP which will help some. I am still not where I want

to be concerning Ted's education and placement at school. I think that

taking Ted out of the classroom and putting him in a separate class

with all individuals that have difficulty conforming to the " norm " is not

beneficial. I will continue to advocate for Ted to be accepted for who

he is in this society without being segregated.

Gail

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January 16, 2001

Hi terry,

I am in CT. Do you have any suggestions?

January 16, 2001

In a message dated 1/15/01 8:16:12 PM Eastern Standard Time,

doug.smith@... writes:

<<

I need some help on how to appproch a ppt for iep. My son is showing

more and more characteristics of autism or pdd. The school system is

not cooperative. what a suprise. I want to implement some changes.

They are doing the cars and the vineland, but won't diagnosis. I need

to get the dianosis for the changes. Who do I go to. most of the

doctors, specialist i spoke to won't touch it because of the dual

diagnosis. I need support and help. My son is 5 years old and I know

early intervention is detrimental. Thanks.

lisa-mom of 5 sons. 7,6,5,3,and1 >>

,

My daughter Madison (7, DS and autism) was dx'd down at Kennedy Krieger

Institute at s Hopkins Medical Center. She was 5 when Dr. Capone dx'd

her. I knew she had autism from the time she was two years old, and none of

her teachers or therapists believed me either. However, as time progressed,

the autism became so blatant, that they actually encouraged me to take her

for a full evaluation. However, we paid for it out of pocket. I had been

seeing Dr. Capone since Maddie was two, and he has been doing studies on

children dually dx'd for 4 or 5 years now. Maddie participated in one of his

studies. You might be able to fight and get the school district to do an

eval. But most are not believers in the fact that the two conditions

co-exist either. We had our dx and the school psych still kept saying he's

just never never never seen this before. However, once he saw Maddie, he

knew it for sure then. We did fight and get the school district to pay half

of one of our visits down to KKI, but it wasn't for the autism dx. It was a

follow up visit.

Where do you live? And what kind of insurance do you have? (ours was HMO

and they wouldn't pay out of state, nor will medical assistance) We have

something here called FDSS and they give money to families for various

things. Do you have something like that? Maybe you could do the online

autism test first, to confirm your thoughts?

Donna

January 16, 2001

Dear Joan,

I am in CT, I would like the school to pay for the outside assesment

and to get the actual diagnosis. How do I go about doing this, after the

vineland and gars has been done. I am very sure bailey is going to be in

the autism spec. He is rocking, self injuring, spinning things when

allowed, fingers in front of face all the time., obessive behavior,

things not typical of a child with DS, at the level he is doing them. I

don't understand why the school system will do the evals, but won't

validate them with the diagnosis so that I can have his educational

instruction changed!! What can I do. I do have the 100% support of his

speech teacher who is seeing the same things, everyone else is a fraid

for thier job if they speek up because it envolves the budget, A very

sticky subject here especially when it come to special education.

Help!!

January 16, 2001

Carol,

I think you should try to get the school to put in a touch screen on the

computer for Trisha. She's only 8!! I can't believe they don't already

have one. And it does indeed sound to me like they have stagnated when it

comes to teaching her. Are they using PECS with Trisha? Or some form of FC

with her? Do they use hand over hand til she understands? Is she getting

one on one? Are they doing their best to facilitate interaction with the

other kids in the class? If they arent' doing these things, then I really

think your doc is right and you should call an emergency IEP. You'd need to

go in fully planned with what you expect them to do however, since we all

know explicit ROAD maps still arent' enough sometimes!!!! ALL children DO

learn and progress. It does seem that Trisha's teachers don't see that

point!!!!

Donna

January 16, 2001

In a message dated 1/16/01 3:30:26 PM Eastern Standard Time,

doug.smith@... writes:

<<

Donna, thank you for the info, what is the online autism test? I live in

CT. I am familar with the KKI. how is madison doing? and where do you

live? what grade is she in? what kind of educational reccomandations did

you get>what kind of program is she in in school? lisa >>

,

I didn't take the online test, so someone else PLEASE direct there?

Thanks. I live in Philadelphia . Maddie is non-verbal and also has

no comprehension of the human voice. Very frustrating. I walk in her

classroom and chat with the teacher and she has no clue I'm there. However,

if she sees me, she gives me hugs and responds. Yes, her hearing has been

tested a kazillion times (including an ABR) and she hears fine. They've

placed her in the severe range for MR, but just ask me; she's pretty darn

smart!!! We used Greenspan's floortime method for years with Maddie and

made wonderful progress (I'm a big fan). I had read up on the ABA method and

was totally opposed to it (looked too much like dog training to me).

However, the school Maddie now attends, implements ABA and we are seeing

GREAT results. For the first time since the onset of autism, Maddie smiles

at us appropriately and makes eye contact, is eating with a spoon, and

starting to respond to her spoken name. She is sitting on the toilet and

made her first deposit a couple weeks ago. We're very excited!!!!

When the time approached for Maddie to leave her cozy early intervention

program, I checked out every single educational option in Philly and outside.

The public school had WAY too much lacking for her and I vowed that she

would stay home with me for the rest of her life before I'd send her to the

classroom the SD wanted me to (I visited every type program they'd possibly

offer us). I checked out the closest TEACCH and ABA private program schools

also. Eventually, I found a school that the minute I was there KNEW Maddie

had to go to (there's a lot of fate involved, but I'll save that for another

story). It's called Melmark and it is what they call an approved private

school, which means many of its students are there through state funding.

It's extremely expensive and we had quite the battle to prove Maddie needed

to go there (especially since there's never been a Philly kid go there right

from EI). But we got it, plus a one on one aide, cab driver with aide and

car seat, OT, ST, SI, and private one on one swim lessons (this became

necessary after trying Maddie with her class of 5 others). Most of the kids

at the school are residential care students. Maddie is one of only 25 (out

of 79) who leave each day. It's about an hour drive (only 40 minutes on the

way home however) which is a bummer, but she loves car rides. All this is

wonderful, but the thing I love about her school is that they KNOW Maddie

learns and are determined to continue to bring out the best in her. They

work with the parents and coordinate what works at home in school, and expect

the parents to do the same with what works at school.

I had totally different plans for Maddie before the onset of her autism .

And many kids who are dually dx'd with DS and autism are fully included.

This was NOT an option for us, I think even if we didn't live in Philly. We

still are working hard on getting Maddie to be around people. I really

needed to focus on the autism with her, in order to see any progress. Life

was almost unbearable before we figured out how to get through to Maddie. We

ARE indeed getting through now, but it's a never-ending process, just like

with my four other kids.

Sorry this was so long!!! I hope this helped you.

Donna

January 16, 2001

I can't agree with you more!!! Can you give me an idea on how you changed

the IEP, we have an IEP meeting scheduled for next month and I want to be

prepared. Any info or suggestions you have would be greatly appreciated.

Carol

January 16, 2001

In a message dated 1/16/01 11:18:53 AM Eastern Standard Time,

Imaddenmom@... writes:

<< Hi Gail...

So...did you get some sleep last night?

Terry >>

Hi Terry,

No, but that's okay. Thanks for asking. LOL I had a tea party for a few

friends today and I am all rejuvenated! LOL Well, actually I rented a tea

room and had it catered. LOL No work and messy clean up for me! Wonder if

that's *high tea*? Tea sandwiches, soup, scones, and trays and trays of

pastries, fruits and veggies. Oh, and tea! LOL I am amazed I can be this

happy on a total of 4 hours of sleep in two days. LOL

Gail-who wants to move to England for tea every day! LOL

January 16, 2001

We don't have a child advocacy group close by, but there is one forming and

her pediatrician just gave me the name and number to call.

January 16, 2001

Donna, thank you for the info, what is the online autism test? I live in

CT. I am familar with the KKI. how is madison doing? and where do you

live? what grade is she in? what kind of educational reccomandations did

you get>what kind of program is she in in school? lisa

January 16, 2001

unfortuneatly our schools are a little behind the times when it comes to

special ed, although the school will disagree with my opinion of course. :-)

I have been asking for an aid for Trisha for years now only to be told they

didn't think it was necessary and that was before the wandering started. Her

first 3 years of school was nothing but a farce. They babysitted her more

than anything, she wasn't given the basic skills needed to function and not

only that we discovered her teacher was yelling and shaking the kids and

trisha was absolutely terrified of her. The teacher left teaching that same

year. We have been struggling for years with the school system and as I

learn more and more it seems that want to fight even harder. That is why I

want to make sure when we go into this IEP meeting I am fully prepared. If

anyone has any examples that might help me from their own IEP's please let me

know.

I will continue to advocate for Trisha as long as it takes, she is more than

worth the effort. She has so much to give if they would only see beyond the

DS.

Carol

January 16, 2001

In a message dated 1/16/01 6:43:12 PM Eastern Standard Time,

doug.smith@... writes:

<< Dear Donna,

Tahnk you for getting so personal with me about maddie. I feel we have

much in common. bailey also is non verbal, not using the potty, and just

today I went to see him at school and he didn't even realize I was

there. That hurts!! once he see's me and is prompted he will come over

and hug me. He is biting people at random and is biting himslef. This

worries me. He likes to play alone and does not initiate play with other

children. How does maddie do with her siblings? bailey also has 4. But

they initiate with him, sometimes we have to deal with overstimulation

though. Its hard for his brothers to understand. They are all so close

in age though, hopefully they will also be his bigest advocates.. write

soon >>

,

Maddie's latest reports from her ST and OT say... " Maddie prefers to be

alone " . UGH!!! That hurts too. She also never initiates play with other

children, but does much better with her siblings. We've come a real long way

with that though , and probably with time, will too. Honestly,

it wasn't too long ago, that I had to chase the other kids away so I could

calm Maddie down (which would take anywhere from 2 to 4 hours). Maddie has a

sister just one year older, but the others are spaced further. Joe is 19,

is 17, n is 15, Allie is 8 and Maddie is 7. The span has served

us well, because the older ones just have a better understanding.

Typically, the kids initiate with Maddie. But then, they never leave her

alone. She's like a brand new baby they can't keep their hands off of.

Sometimes, I do have to say... " guys, CHILL....give her some space " . They

have gotten really good though, since they are older and more mature, at

knowing how to approach her to get her to interact. Lately, since doing the

ABA, she is doing a lot of initiating, and THAT is so cool to watch!!!!!

, we're in a MUCH better place than we were two years ago, and a place so

far removed from four years ago (thank God). I know it'll be the same for

you.

Donna

P.S. We went through a biting stage with Maddie, and it ripped my heart

out. Alison would be hugging and hugging her, and Maddie would just bite

into her shoulder. Oh, how it broke my heart to see Allie's face!!!!!! I

still can feel that anguish!!! Maddie's biting was solely related to a

sensory/excited issue. She never did it out of anger. We did TONS of

oral/mouth massages with our fingers as well as with vibrators and she

stopped shortly thereafter.

January 16, 2001

was diagnosed early in life around 2-3 years with the autism, a ped

psychritrist diag. it, we were at our wits end with his behavior at home and

school. I think I would maybe try (if havent) a special needs type clinic

that are familiar with dual diagnosis etc. shawna.

>From: doug.smith@...

>Reply-To: egroups

>To: egroups

>Subject: my 5yr old son w/ds@autism?

>Date: Tue, 16 Jan 2001 00:48:58 -0000

>

>I need some help on how to appproch a ppt for iep. My son is showing

>more and more characteristics of autism or pdd. The school system is

>not cooperative. what a suprise. I want to implement some changes.

>They are doing the cars and the vineland, but won't diagnosis. I need

>to get the dianosis for the changes. Who do I go to. most of the

>doctors, specialist i spoke to won't touch it because of the dual

>diagnosis. I need support and help. My son is 5 years old and I know

>early intervention is detrimental. Thanks.

> lisa-mom of 5 sons. 7,6,5,3,and1

>

> http://www.onelist.com/community/

>

_________________________________________________________________

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January 16, 2001

Dear Donna,