Re: The diagnosis.....

[Guest guest]

Lynn,

Glad you found somje one in Sac City who would listen to you. I was

told there was no dual dx and what the heck did think I was going to

change for him. Thye would not even see me.

It is importamt to get the dx on the front of the IEP from DS to

autism. It took us a few IEP's but did finally get it. We were able to

get more speech -not that he has ever spoken. I wuld push for

PECS(Picture Exchange Communication System). It has helped JJ lots.

There is a list owner from your area--you amy see the same dr. I am

sure she will be contacting you. She is a great help for all of us.

By the way, we are from Oroville-70 miles north.

On Tuesday, November 5, 2002, at 08:05 PM, lgeddie@... wrote:

> Hello to all my new friends.  I am to ignorant to add much at this

> point.  We

> took our son, , to the neurologist last week.  He is in

> Sacramento, and

> specializes in autism.  he was very upset with the school system. 

> is

> 13, and is now dx as a severely autistic child who happens to have down

> syndrome.  I called the person in our county who deals with this, and

> she

> will not even return my calls!  Earlier, she had told me that she does

> not

> believe in dual diagnosis's. 

>    I have called for an IEP, and they are doing it the week of the

> 18th. I

> honestly do not know what to ask for.  The doctor said that

> communication is

> of the utmost concern.  His experience is that kids like turn

> aggressive out of frustration.  We have seen some of this as he hit

> adolescence.

>     I need ideas of what I should ask for.  He is in a severely

> handicapped

> class that has some autistic kids in it.  cannot read or write,

> and

> has no verbal skills -- but, he will go in the kitchen and cook, and

> can run

> any machine.  He is not stupid, just trapped.

>     The doctor was very honest, and said we have lost a lot of time. 

> Pushing

> communication at this point will help him not become aggressive.  Any

> IDEAS????????

> ~Lynn, Mom of (and Adrienne, Amy, , , McKee, ,

> April, Geoffrey, , Kaitlyn, and Kerstin!)

>

>

>

[Guest guest]

Lynn

I live in Folsom 20 miles from Sacto!! plays soccer and basketball for the

Sac city special olympics. The weekend is a 3-day tourney (Fall classics) for

the Northern Calif. teams. Opening ceremonies are Friday evening at Cal Expo!!!

Kathy

PS HI EVERYONE!!!

The diagnosis.....

Hello to all my new friends. I am to ignorant to add much at this point. We

took our son, , to the neurologist last week. He is in Sacramento, and

specializes in autism. he was very upset with the school system. is

13, and is now dx as a severely autistic child who happens to have down

syndrome. I called the person in our county who deals with this, and she

will not even return my calls! Earlier, she had told me that she does not

believe in dual diagnosis's.

I have called for an IEP, and they are doing it the week of the 18th. I

honestly do not know what to ask for. The doctor said that communication is

of the utmost concern. His experience is that kids like turn

aggressive out of frustration. We have seen some of this as he hit

adolescence.

I need ideas of what I should ask for. He is in a severely handicapped

class that has some autistic kids in it. cannot read or write, and

has no verbal skills -- but, he will go in the kitchen and cook, and can run

any machine. He is not stupid, just trapped.

The doctor was very honest, and said we have lost a lot of time. Pushing

communication at this point will help him not become aggressive. Any

IDEAS????????

~Lynn, Mom of (and Adrienne, Amy, , , McKee, ,

April, Geoffrey, , Kaitlyn, and Kerstin!)

[Guest guest]

Hi Lynn!

Your experience is not foreign to alot of us...your not alone! I never

did get my son duel diagnosed. I finally pulled into a shell and started

listening to 'me' instead of 'them'. I had NO clue of how to deal with

this...I knew he was different from ds kids but whenever I asked a so-called

'expert' about it, the answer was always something stupid like " oh, that's

just him.... " or.... " he is just more severely retarded than others " ....it

wasnt until I started dx-ing him myself and ignoring 'them' that headway was

made in helping him. His frustration level had peaked and I was concerned

about his self abuse....long story, but once I learned how to communicate

with him more on 'his' level things started turning around. I started

addressing things with him on a 3 to 4 year old level....as if he was that

age....he started responding to that with pointing and taking me to things to

show me! He has progressed so much since then! He is still non-verbal...I

only wish I would have listened to me earlier! LOL I am so excited to find

this group, they have been a life-saver for us.....I am sure you have lots to

offer too!! and will get lots of help here, too...dont hesitate to pop

questions....there are some here who have been dealing with all this

longer....and there are some new 'helps' out there for our kid's too!

Donna, Montyman's Mom

[Guest guest]

In a message dated 11/5/02 11:07:41 PM Eastern Standard Time, lgeddie@...

writes:

> The doctor was very honest, and said we have lost a lot of time. Pushing

> communication at this point will help him not become aggressive. Any

> IDEAS????????

Hi Lynn,

Maybe time was lost, but it's never too late IMO. Communication is

indeed the best start. recommended introducing PECS and I agree.

Does your son comprehend verbal language? If so, maybe some form of AAC (a

Mac is a simplistic way to start) might be required. I would also ask them

to build on social skills. The best way to start out with that is find what

motivates your son the most and use it. Also using social stories might be

helpful for your son, to help him understand what will happen next as well as

to help build his interest in others. How does your son learn best?

What motivates him and what is he *invested* in? Answering these questions

will help you write an IEP that is shaped for him.

GOod luck and let us know how it goes.

Donna

[Guest guest]

Lynn,

This is not unusual for the school to deny a dual diagnosis. I cost the

school district more money for a child with autism than a child without. I

pushed very hard two years ago for a diagnosis in the school system. He

had already been diagnosed from a dr. I was told that a dr and a school

professional where two different things and that once I have " autism " listed

on 's record, it would be harder to take it off later if I choose too.

My beef was that I wanted to make sure that was being taught as he was

supposed to be as an autistic child. They assured me there was no

difference. Last year our school district started it's own special ed

program. I got the autistic diagnosis and all of a sudden, I have a

communication folder, is using PECS, we have an in-home coordinator

that comes out and helps us set up our home in a way that will help and

parent education classes. The parents of autistic children meet once a

month during the school year and discuss topics that effect us. These are

things that I have received since the diagnosis, after I was told that there

was not difference. We have made HUGE progress since last year. has

just started the Edmark reading program and is moving along it great. You

need to stand your ground. I know of one school district that has " experts "

come in and evaluate kids but are told not to approve them. If the

" experts " from your school district do not approve, then you have the right

to request an outside " expert " and the school district is supposed to pay.

DO NOT SIGN THE IEP. If that IEP does not have diagnosis of autism on it,

don't sign it. Fight it all the way. Know that we are here to help you and

to listen to your frustrations. It will be a battle, but remember who you

are doing this for. Please keep us posted.

Tollefson

Marc Tollefson

Tollefson (7 yrs DS/ASD/ADHD)

Elisha Tollefson (22 months)

The diagnosis.....

> Hello to all my new friends. I am to ignorant to add much at this point.

We

> took our son, , to the neurologist last week. He is in Sacramento,

and

> specializes in autism. he was very upset with the school system.

is

> 13, and is now dx as a severely autistic child who happens to have down

> syndrome. I called the person in our county who deals with this, and she

> will not even return my calls! Earlier, she had told me that she does not

> believe in dual diagnosis's.

> I have called for an IEP, and they are doing it the week of the 18th. I

> honestly do not know what to ask for. The doctor said that communication

is

> of the utmost concern. His experience is that kids like turn

> aggressive out of frustration. We have seen some of this as he hit

> adolescence.

> I need ideas of what I should ask for. He is in a severely

handicapped

> class that has some autistic kids in it. cannot read or write, and

> has no verbal skills -- but, he will go in the kitchen and cook, and can

run

> any machine. He is not stupid, just trapped.

> The doctor was very honest, and said we have lost a lot of time.

Pushing

> communication at this point will help him not become aggressive. Any

> IDEAS????????

> ~Lynn, Mom of (and Adrienne, Amy, , , McKee, ,

> April, Geoffrey, , Kaitlyn, and Kerstin!)

>

>

>

[Guest guest]

>In a message dated 11/5/02 11:07:41 PM Eastern Standard Time, lgeddie@...

>writes:

>

>

> > The doctor was very honest, and said we have lost a lot of time. Pushing

> > communication at this point will help him not become aggressive. Any

> > IDEAS????????

Lynn...

This is where we started. BEFORE we had an autism diagnosis or even thought

about one, I had a horribly aggressive child due to lack of communicaitno

and abuse.

My suggestion?

Figure out what he might want to say to you when he's frustrated. Is there

a common situatiobn taht happens almost daily (or many times a day) that

you can figure out?

If so, use a voice output method. not because it's the best long-term

solution, but because it is the most immediate message of " I heard you " you

can give to your son.

Andy was pretty young when we did this, but it really brought home the

importance of putting meaning to Andy's aggression as a way to begin to

defuse it. here's how it went:

After watching the situation, Andy was getting really mad when his brother

took a turn with the tv, or turned the light on or off (whichever it

wasn't). It sounds simple, but it isn't.He didn't appear to be watching the

tv, and we could only afford one (we still only have one by choice).

Anyway, whenever Andy started to get upset and this was th esituation, we

would push a button on a speakeasy device that said (rather loudly) either

" It's MY turn! " or " What do you MEAN it's 's turn?!? " Hearing the

protest stated by the machine, I would answer it. " I'm sorry andy.

gets a turn and then it's your turn. "

of course this wasn't " magic. " It took a while.

At the same time, we introduced a voice switch that we could hear through

out the house from the kitchen. It said, " I want a snack! " The rule was

whenever he made it talk, we came running. Now....he quickly learned that

was the rule. So he didn't want a snack, but he loved watching us " hop to! "

when we heard him talking from the kitchen.

What your son needs to learn is that what he *says* is powerful before he

gets frustrated.

Try to figure out what the most important messages ***to HIM*** are in a

day. Look for one or two that seem key. If you choose things that cause HIM

the most frustration (not the teacher or even you), then he will be more

invested in talking to you. And that's the key to using communication to

help reduce his frustration. Looking at the world through his eyes, at his

age, with his interests in mind to find an angle to pursue.

You'd never know that Andy was this biting, scratching, hair pulling,

nightmare child that he was when he was 6-8 years old if you met him today.

Except when he's really ill and in pain or frightened. I don't know how to

help him with that just yet. When he hurts, it's not a time to teach, you

know? When he's scared out of his mind, it's not exactly a time ot

teach--it's a time to let him know you will keep him safe. REgardless, he's

a happy kid nad even wh en frightened, doesn't do much to hurt us any more.

And the hurt he does inflict is NOTHING compared to the 52 bite marks I had

at one point all those years ago.

Hang in there.

BTW...the quote I *clung* to for years as we went through all this was from

Eleanor Roosevelt:

" You must do the thing you think you cannot do. "

Most the time, those things I think I am incapable of are the most

important to pursue.

hugs,

j

[Guest guest]

Elie was not diagnosed until he was 12 so I understand your frustratio.

Language enriched environment ASAP> Fight for at least 3 times a week

speech - individual and group. Elie has 2 hours of individual speech and

one hour of group deliberate speech - this means guided by a speech

therapist (not random classroom speech).

As to the school district not believing in dual diagnosis - that is their

problem. You have documentation from a reputable physician. Most places

that have gone to mediation or actual court have found the school districts

to be in violation of IDEA.

Now as to what to ask for. PECS, sign language, augmentative communication

devices - all of this preceded by a complete speech evaluation by a Speech

and Language Pathologist. This is, I believe a MAster level speech person.

You also will find that in most parts of the country you are now eligible

for services through Mental Helath as well as Mental Retardation. those

first few years we had 15-25 hours a week of Theraputic Support Services

paid by the state/county through our Medicaide for behavior odification

help. You can also get this through the school district, but we found it to

be most helpful after school and on the w/e.

More??? Write me separately and I will tell you about S>I>, medications,

etc!!

Welcome to our crazy world.

A big hug!!

Sara

Sara - Choose to make lemonade, not complain about the lemons.

----Original Message Follows----

From: lgeddie@...

Reply-

Subject: The diagnosis.....

Date: Tue, 5 Nov 2002 23:05:57 EST

Hello to all my new friends. I am to ignorant to add much at this point.

We

took our son, , to the neurologist last week. He is in Sacramento,

and

specializes in autism. he was very upset with the school system. is

13, and is now dx as a severely autistic child who happens to have down

syndrome. I called the person in our county who deals with this, and she

will not even return my calls! Earlier, she had told me that she does not

believe in dual diagnosis's.

I have called for an IEP, and they are doing it the week of the 18th. I

honestly do not know what to ask for. The doctor said that communication is

of the utmost concern. His experience is that kids like turn

aggressive out of frustration. We have seen some of this as he hit

adolescence.

I need ideas of what I should ask for. He is in a severely handicapped

class that has some autistic kids in it. cannot read or write, and

has no verbal skills -- but, he will go in the kitchen and cook, and can run

any machine. He is not stupid, just trapped.

The doctor was very honest, and said we have lost a lot of time.

Pushing

communication at this point will help him not become aggressive. Any

IDEAS????????

~Lynn, Mom of (and Adrienne, Amy, , , McKee, ,

April, Geoffrey, , Kaitlyn, and Kerstin!)

[Guest guest]

i would do something easy and visual that incooperates his activities and

likes, such as sign language when you talk, even if its just a few basic

words, this hleped decreased nathan's aggressive behaviors when he was

preschool age. Also many of us use pictures or pic/word symbols or PECS with

our children with success. we are also at a hard time right now, nathan is

11 and has been haveing many beavhior problems again i think its a preteen

prepuberty issue, but also communication kids his age talk most of all and

his speech is limited and often misunderstood causing frustration and anger.

Nomatter what you try be patient, and consistancy is very important in the

home and school. shawna.

The diagnosis.....

> Hello to all my new friends. I am to ignorant to add much at this point.

We

> took our son, , to the neurologist last week. He is in Sacramento,

and

> specializes in autism. he was very upset with the school system.

is

> 13, and is now dx as a severely autistic child who happens to have down

> syndrome. I called the person in our county who deals with this, and she

> will not even return my calls! Earlier, she had told me that she does not

> believe in dual diagnosis's.

> I have called for an IEP, and they are doing it the week of the 18th. I

> honestly do not know what to ask for. The doctor said that communication

is

> of the utmost concern. His experience is that kids like turn

> aggressive out of frustration. We have seen some of this as he hit

> adolescence.

> I need ideas of what I should ask for. He is in a severely

handicapped

> class that has some autistic kids in it. cannot read or write, and

> has no verbal skills -- but, he will go in the kitchen and cook, and can

run

> any machine. He is not stupid, just trapped.

> The doctor was very honest, and said we have lost a lot of time.

Pushing

> communication at this point will help him not become aggressive. Any

> IDEAS????????

> ~Lynn, Mom of (and Adrienne, Amy, , , McKee, ,

> April, Geoffrey, , Kaitlyn, and Kerstin!)

>

>

>

[Guest guest]

oh lynn, i thought of something else that really jumped start our

communication with nathan was at groups, look under

communicating, -- " gail dont you still go there? " i have one of his books

and he has some great tips, by james Macdonald, and he reads the posts and

posts too. I hope were allowed to mention another group. shawna.

Re: The diagnosis.....

> In a message dated 11/5/02 11:07:41 PM Eastern Standard Time,

lgeddie@...

> writes:

>

>

> > The doctor was very honest, and said we have lost a lot of time.

Pushing

> > communication at this point will help him not become aggressive. Any

> > IDEAS????????

>

> Hi Lynn,

> Maybe time was lost, but it's never too late IMO. Communication is

> indeed the best start. recommended introducing PECS and I agree.

> Does your son comprehend verbal language? If so, maybe some form of AAC

(a

> Mac is a simplistic way to start) might be required. I would also ask

them

> to build on social skills. The best way to start out with that is find

what

> motivates your son the most and use it. Also using social stories might

be

> helpful for your son, to help him understand what will happen next as well

as

> to help build his interest in others. How does your son learn best?

> What motivates him and what is he *invested* in? Answering these

questions

> will help you write an IEP that is shaped for him.

> GOod luck and let us know how it goes.

> Donna

>

>

>

[Guest guest]

I went to a conference where Mac spoke. I enjoyed it very much

and he gave some very good practical advice esp focusing on making children

" social " people rather than focusing on things like ABC's and 1,2,3's. He

also has some books out too...I can get anyone interested the title of the

one that I have read.

At 08:25 PM 11/7/02 -0600, you wrote:

>oh lynn, i thought of something else that really jumped start our

>communication with nathan was at groups, look under

>communicating, -- " gail dont you still go there? " i have one of his books

>and he has some great tips, by james Macdonald, and he reads the posts and

>posts too. I hope were allowed to mention another group. shawna.

> Re: The diagnosis.....

>

>

> > In a message dated 11/5/02 11:07:41 PM Eastern Standard Time,

>lgeddie@...

> > writes:

> >

> >

> > > The doctor was very honest, and said we have lost a lot of time.

>Pushing

> > > communication at this point will help him not become aggressive. Any

> > > IDEAS????????

> >

> > Hi Lynn,

> > Maybe time was lost, but it's never too late IMO. Communication is

> > indeed the best start. recommended introducing PECS and I agree.

> > Does your son comprehend verbal language? If so, maybe some form of AAC

>(a

> > Mac is a simplistic way to start) might be required. I would also ask

>them

> > to build on social skills. The best way to start out with that is find

>what

> > motivates your son the most and use it. Also using social stories might

>be

> > helpful for your son, to help him understand what will happen next as well

>as

> > to help build his interest in others. How does your son learn best?

> > What motivates him and what is he *invested* in? Answering these

>questions

> > will help you write an IEP that is shaped for him.

> > GOod luck and let us know how it goes.

> > Donna

> >

> >

> >