hello

[Guest guest]

Jenn,

I'm so glad to see you've joined! You'll find this group to be loving and

supportive, because we all know what it is to be ill, and to feel isolated.

We all luv ya Jenn!!

Hello

hey everyone,

I'm a newbie here. But I'm no newbie to being sick.. I have hodgkins

disease. i was diagnosed the day after thanksgiving, 2000. i have

been undergoing chemo for the past 4 months and have 2 more months of

chemo to go.

all things considered, i guess things are going ok.

no one in my family has cancer, or any sort of disease for that

matter. hodgkins has no known cause, as you probably have learned.

heather introduced (forced!) me to join this group. just kidding

heather. )

just a quick note for now. i will write more when i can.

jenn in minnesota.

~~~~ *** ~~~ *** ~~~ *** ~~~~

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~~~~ *** ~~~ *** ~~~ *** ~~~~

“Hold on to what is good, even if it's a handful of earth. Hold on to what

you believe, even if it's a tree that stands by itself. Hold on to what you

must do even, if it's a long way from here. Hold on to your life, even if

it's easier to let go. " - Pueblo Prayer

~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Welcome Jenn!!!!!!! I'm sure you will love it here....Such a loving &

caring family we are! ....If you need love & support, this is the place to

be.....Take care & hang in there! Will write more later....Love, Barb

Hello

hey everyone,

I'm a newbie here. But I'm no newbie to being sick.. I have hodgkins

disease. i was diagnosed the day after thanksgiving, 2000. i have

been undergoing chemo for the past 4 months and have 2 more months of

chemo to go.

all things considered, i guess things are going ok.

no one in my family has cancer, or any sort of disease for that

matter. hodgkins has no known cause, as you probably have learned.

heather introduced (forced!) me to join this group. just kidding

heather. )

just a quick note for now. i will write more when i can.

jenn in minnesota.

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Being Sick Community

Visual problems with colors?

Click the link below and select the modify link to your right. Then select

the **Send Plain Text Email** option. This will stop you receiving emails

with colored or enlarged fonts.

/join

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~~~~ *** ~~~ *** ~~~ *** ~~~~

" Hold on to what is good, even if it's a handful of earth. Hold on to what

you believe, even if it's a tree that stands by itself. Hold on to what you

must do even, if it's a long way from here. Hold on to your life, even if

it's easier to let go. " - Pueblo Prayer

~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Hi Jenn

said you were going to come Welcome to the group! Sorry for the late reply You are really going to like it here everyone is very supportive and caring! I hope you like it here there is usually always some one on if you need to talk.

Jessi () 17 y/o

Hello

hey everyone,

I'm a newbie here. But I'm no newbie to being sick.. I have hodgkins

disease. i was diagnosed the day after thanksgiving, 2000. i have

been undergoing chemo for the past 4 months and have 2 more months of

chemo to go.

all things considered, i guess things are going ok.

no one in my family has cancer, or any sort of disease for that

matter. hodgkins has no known cause, as you probably have learned.

heather introduced (forced!) me to join this group. just kidding

heather. )

just a quick note for now. i will write more when i can.

jenn in minnesota.

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Being Sick Community

Visual problems with colors?

Click the link below and select the modify link to your right. Then select the **Send Plain Text Email** option. This will stop you receiving emails with colored or enlarged fonts.

/join

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Photo Album, memorial page, members profiles, birthdays, locations, medical resources, counselling via email and a whole bunch of free things.

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Message Archives and Digest Attachment Pictures:-

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/links

Personal Complaints or problems:-

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To modify your subscription settings please visit:-

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To subscribe or unsubscribe please email:-

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~~~~ *** ~~~ *** ~~~ *** ~~~~

“Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go." - Pueblo Prayer

~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

I went in to have my blood drawn again and my hemoglobin is up a bit, yet low enough to continue being anemic. I was in bed at 5pm last night and didn't wake up until 8:30 this morning. It felt good to sleep like that. I just wish I felt refreshed and energized.

######### Wow That's a lot of sleep!!! I could use that... But it is a bummer you don't feel it in your body :-(

Went to my 1 month post op and everything looks good. I can now start lifting 5lbs weights! I am so happy about that. Maybe in a week or two, I will be able to lift my brand new nephew.

########## Great news!!! Glad all is looking up. How are you feeling now? A new nephew! That's great news too.... HUGS

HELEN

[Guest guest]

Denisa,

I am sorry that you are having so many things happening at once. Hang in there.

Chelle

[Guest guest]

Dear Denisa,

Glad to see you again.

I've been on Neurontin for chronic pain for more than 2 years now. I

would not say it relieves my pain, but as part of my overall chemical input

it does seem to help me MANAGE my pain well enough so that I haven't been

to the ER lately. Avoiding the ER means I also avoid another spinal tap

or two, and that works for me!

As far as SS goes, all you can do is turn in everything you can think

of and wait. True, they do turn down most first time applications and force

people to appeal. This is done in an attempt to weed out the phony applicants.

Some diseases are recognized as disabling by SS and get approved right away.

I wish I knew which ones they are, but I think MS is one of them. I have

a 7 year old headache and no one agrees on what is causing it, so that complicates

my case.

Good Luck,

ie B

fbertaud@...

Denisa wrote:

I am sorry I haven't written in so long. I have been dealing with a lot. I find out (hopefully) this week whether or not my social security was approved or denied..but with such a high percentage being denied the first time, I am expecting the worst.

My psychiatrist changed my meds . I am now on Neurontin and Serzone for my bipolar. My psychiatrist put me on Nuerontin thinking it may help with my headaches. Neurontin is often used for chronic pain. Why not try to kill two birds with one stone?

Denisa

No matter what the trouble we carry round insideWe're never safe from the truth but in the truth we can surviveWhen the wall of denial come tumblin downDown to the groundStevie Ray Vaughn (Wall of Denial from the CD "In Step")

It's Amazing in the blink of an eyeYou finally see the lightIt's Amazing when moment arrives when you know you'll be alrightIts Amazing and I'm saying a prayer for the desperate souls tonightAerosmith ( Amazing from the CD "Get a Grip")

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Being Sick Community

Visual problems with colors? Click the link below and select the modify

link to your right. Then select the **Send Plain Text Email** option. This

will stop you receiving emails with colored or enlarged fonts./join

Members Lounge:- Photo Album, memorial page, members profiles, birthdays,

locations, medical resources, counselling via email and a whole bunch of

free things.http://www.elderwyn.com/members

Message Archives and Digest Attachment Pictures:-/messages

Chat:-

Scheduled Daily Chats at # on IRC DALnet./files/chat.htm

Bookmarks:-

Add a website URL you have found useful./links

Personal Complaints or problems:-

Please contact a moderator either via email

<-owner >

Subscription Details:-

1) Individual email - means that every email sent to the list you receive.

2) Daily Digest - sends you 25 messages in one single email for you to browse.

This is an excellent option if you receive alot of email.

3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.

To modify your subscription settings please visit:- /join

To subscribe or unsubscribe please email:-

-subscribe

-unsubscribe

~~~~ *** ~~~ *** ~~~ *** ~~~~ “Hold on to what is good, even if

it's a handful of earth. Hold on to what you believe, even if it's a tree

that stands by itself. Hold on to what you must do even, if it's a long way

from here. Hold on to your life, even if it's easier to let go." - Pueblo

Prayer

~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

I haven't been to the ER in almost 2 years. The last experience was so horrible, that I will do almost anything to avoid the ER. Although my neuro said to call her FIRST, if I ever do have to go and she will make it less of a hassle for me.

Lee

Bertaud <fbertaud@...> wrote:

I've been on Neurontin for chronic pain for more than 2 years now. I would not say it relieves my pain, but as part of my overall chemical input it does seem to help me MANAGE my pain well enough so that I haven't been to the ER lately. Avoiding the ER means I also avoid another spinal tap or two, and that works for me! As far as SS goes, all you can do is turn in everything you can think of and wait. True, they do turn down most first time applications and force people to appeal. This is done in an attempt to weed out the phony applicants. Some diseases are recognized as disabling by SS and get approved right away. I wish I knew which ones they are, but I think MS is one of them. I have a 7 year old headache and no one agrees on what is causing it, so that complicates my case.

[Guest guest]

I certainly appreciate all of my online friends. It is terrific to have friends all over the world. Thanks, Barbara!!

Lee

Barbara <molesareus@...> wrote:

> > > > >> > * > > > > > > >>Hello There Nice Person> > > > > > > > > >>> > * > > > > > > >> Did Anyone Ever Tell You,> > > > > > > > > >>> > * > > > > > > >> Just How Special You Are> > > > > > > > > >>> > * > > > > > > >> The Light that You Emit> > > > > > > > > >>> > * > > > > > > >> Might even Light a Star>

[Guest guest]

Hi ,

My name is Marisa and I also have an 11 year old son with DS/ASD. We

started noticing that he acted differently and wasn't developing normally

when he was around 1 yrs of age. He had started having seizures and we

attributed some of it to that. Anyway he used to get all excited at bright

lights, like a chandelier when he was little. I knew there was something

wrong way back then but not what it was.

It sounds like is a pretty smart boy. Communication is extremely

important for our kids and you need to make sure that has a good system

to communicate, whether it's sign or the pictures exchange system, (pecs), or

an augmentative device or speaking or a combination of that work for him.

That seems like a poor decision the school made when they stopped him from

signing. If he can communicate then he won't become so frustrated and that

should help a lot with the behavior problems.

You can also ask for a behavior therapist to work with him and you to

understand why the behaviors are happening and what you can do about them. If

you don't want him to go into the social studies class, tell them no and why

you don't want him to. Try to think of what you would like for and how

he best learns, or what motivates him. Is he too overstimulated by large

groups and noise, then maybe he needs a different or quiter environment to

learn. Sensory integration therapy can really help and others really like ABA

or discrete trial.

At that age my son participated in a regular ed kindergarten for inclusion

for as many as 4 years, and the rest of his day he spent in a special day

class where they addressed his goals in the IEP. He has also had

psychological assessments and OT and Speech assessments which will help you

to know where he is now and what goals to set for his IEP. Has this been done

for ?

Many parents with children with special needs have had to fight our school

districts, as I have and many on this list. It can be very hard and

frustrating, but it is worth it. Try to find an advocate in your area that

can help you in fighting the school district and advise you on what to ask

for or demand for . My son Brook at that age used to get, speech, OT, PT,

and adaptive PE. We have had some great teachers and some terrible ones. I

welcome you to our group, you will find much information and sharing and

great advice from some very experienced parents.

Marisa,

Mom to Miles 14, Brook 11, and Genevieve 3 yrs

[Guest guest]

Hi , and welcome! I'm Gail, Mom to Seth-5-ds/asd/pica, and 4 others. I

sure hope your struggles with 's education get straightened out soon. I

guess we will always struggle with that, but the more info we have to know

how to help our kids, the better off they will be. Just too bad we have to

*fight* for everything. I too, couldn't believe that none of Seth's

therapists noticed that Seth was not a normal ds kid. I even asked them

point blank if he was autistic the day before he was dx'd with asd and pica.

They all said no. LOL Well, putting a name to his strange eating habits was

news to them too! LOL Well, nice to have you on the list and keep us

informed on how it's going.

Gail

<< Hello,

My name is Tollefson. I am a mother of a 6 year old son named

who has Down syndrome, Autism and ADHD and a 4 1/2 month old daughter named

Elisha. When was born, we found out that he had Down syndrome. My

husband, Marc, and I were actually o.k. with this. We didn't care about

that, in fact, after looking over our lives as children, we weren't surprised

that we were blessed with a disabled child. I worked until was 6 months

old and resigned to concentrate on him and what he needed to be all that he

could be. had a lot of odd things about him. He didn't have any

medical problems, except for swallowing and that his trachea didn't develop

properly, but that went away in time. When he was a baby, we noticed that

when he was under a ceiling fan, he would tense up every muscle in his body

and flap his hands and gasp in air in excitement. We thought it was cute and

a good trick to show family and friends. I mentioned it to his doctor and

therapists, they didn't seem concerned. As he got a little older, maybe

around 1 1/2 - 2 years old, I noticed him not paying much attention to others

around him, he would get frustrated very easily and act out by throwing toys

at people or hitting, he didn't really " play " with the toys, his attention

span was zero and he enjoyed to run away. He loves to run away. These are

things I wasn't noticing from the other children who have Down syndrome.

seemed different. I finally convinced his doctor that this wasn't

right. He sent us to a psychologist, who by the way has a Down syndrome

child. This psychologist spent most of our time trying to find out what Marc

and I were doing wrong. Oh, I guess I must mention that Marc and I were very

young when we had . I was 22 and Marc was 23, so everything came back as

it's us and our inexperience. I knew deep down that something else was

wrong. The same feeling I had when I was pregnant with him and that too went

down as I was too young to know what I was talking about. I finally gave up

and!

put it in the back of my mind as a wait and see what happens. The older he

got the more I noticed him changing. He can't communicate except to Marc and

myself and still it's minimal. But, he's smart! About the age of 2 1/2 - 3,

I noticed that every time we drove by a Mc's he would kick and scream.

He would start freaking out if I passed the street we normally turned down to

go home or if I took a different way. How does he know the route I take

home. Now that he's older, he tells us to " move over " to a different lane so

we can turn down the right street. My entire home is a parking lot for his

cars. They are all perfectly lined up in a row. When he places a coaster on

a table, he makes sure it is perfectly square and then makes sure his cup is

exactly centered on the coaster. He's known how to work our t.v. and vcr

since he was 3. If I park out front instead of the garage, he freaks out!

In December of 1999, I read an article in our local Down syndrome newsletter

and it was all about DS-ASD and the article from Disability Solutions. This

was describing perfectly. I arrange a meeting with his doctor who

referred us to a developmental doctor. She diagnosed moderately

Autistic and mildly ADHD. This explained a lot. I went straight to his

teachers. was now 4 almost 5 and in special ed preschool. They seemed

shocked and didn't believe me. They said seem to them like a typical

Down syndrome child. After I started reading about Autism and some of the

characteristics, I couldn't believe that no one noticed them in earlier.

Unlike the articles I've read, I didn't have a normal Down syndrome child

first and noticed changes, was like this from the start. This past fall

he started Kindergarten. I have been frustrated all year because the school

system refuses to acknowledge the Autism. When he started preschool, they

stopped him from signing. They told us that he won't learn to use his words

if he relies on signing everything. Two years later, we still aren't using a

lot of words and now have lost all of our signing. He doesn't sign anything.

He doesn't want to sit in the class with the kindergarteners, he wants to

run away. I get notes home from the teacher saying that during calendar

time, which is the time that he is with the kindergarteners, they have to

assist him to stay in the room. His ability level is at about a 2 1/2 - 3

year old. This is an improvement from the three years we were stuck at an 18

month old level. He's recently becoming aggressive too. Last weekend, we

were walking through a store and I was heading toward some windows that face

the parking lot. He thought we were leaving. When I turned down an aisle,

he kicked, screamed and just as a young girl was walking by, leaned over and

hit her. When I leaned over to tell him that that was wrong, he in turn hit

me crossed the face.

I have taken the summer off of work to focus on studying up on DS-ASD and on

what I need to do to help him in school. I need guidance and advice for

where to turn and what works. We are just starting over again with what

really is appropriate for . I don't feel he's benefiting from being in

the public school. They want to put him in the regular classroom for Social

Studies next year. He doesn't know what that is and the aide will spend most

of her time trying to keep him in his seat. I've been considering sending

him to a private school, there is a school for autistic children, but I'm not

sure if he would fit in there either. The town where we live is new and

their special ed program is just coming together. If I stay at the public

schools, I will have to fight for everything I need, but I am not really sure

what that is. I am willing to do it for , but I need help.

I hope I haven't talked your ear off. I just wanted to let you know the

basis of my situation. I have 12 weeks to figure something out before school

begins again in fall. I would appreciate any advice, assurance and guidance

I could get.

Thank you,

Marc, , and Elisha Tollefson >>

[Guest guest]

Hi

My name is Kathy and I have a son who is 11 years old and you have described

a lot

of behaviors that we experienced. The fan, no eye contact,etc. When scott

was about

4-5 years old he would only get mad at me and a few time he would try to

take me

down to the floor, and it was because he was frustrated due to lack of

commucation

skills. Since then we have used PECS and he no longer will try to hit or

come at me.

Last year I put in a school for autistic children and he does very

well.

We call him the class jock and class validictorian because the other

children do

not do as well as - on the down side, he has no interaction or example

from

non-disabled children and he misses that and seems very lonely at times. He

had

always been full-inclusion prior to this past year. He is the only child in

the school

district that attends a private school. I feel that his life-skills are

more important

than his academics. I do want him to be included in the community and know

how

to respond to certain situations. overall is very easy-going but

there are

times when he will be mad about something or just in a bad mood and all of a

sudden he will throw himself to the ground (only when we are not at home)

and

if I try to pick him up or correct him he will lunge at me. This is rare

now, but

when he was younger it was the norm for him. Of course, I was the only one

in

the family he would take it out on. had an obsession with Mcs

for

a while and he would scream when we passed it - we had to drive the same

route everytime as well. The reason he liked Mcs was because of the

play area they had and not the food, so we started taking him to the park

every

day and the Mcs problem is gone. I was 28 when I had and after

a couple of years I too noticed that he was not like other children with

Down

Syndrome and I had to convince doctors and the alta regional center we go to

that he was different. Alta regional and all of their therapists and

doctors have

all agreed that he has autistic spectrum disorder. Write me back if you

have any

questions or info. I live in Folsom, California (by Sacramento) Good Luck

Kathy

Hello

> Hello,

> My name is Tollefson. I am a mother of a 6 year old son named

who has Down syndrome, Autism and ADHD and a 4 1/2 month old daughter named

Elisha. When was born, we found out that he had Down syndrome. My

husband, Marc, and I were actually o.k. with this. We didn't care about

that, in fact, after looking over our lives as children, we weren't

surprised that we were blessed with a disabled child. I worked until

was 6 months old and resigned to concentrate on him and what he needed to be

all that he could be. had a lot of odd things about him. He didn't

have any medical problems, except for swallowing and that his trachea didn't

develop properly, but that went away in time. When he was a baby, we

noticed that when he was under a ceiling fan, he would tense up every muscle

in his body and flap his hands and gasp in air in excitement. We thought it

was cute and a good trick to show family and friends. I mentioned it to his

doctor and therapists, they didn't seem concerned. As he got a little

older, maybe around 1 1/2 - 2 years old, I noticed him not paying much

attention to others around him, he would get frustrated very easily and act

out by throwing toys at people or hitting, he didn't really " play " with the

toys, his attention span was zero and he enjoyed to run away. He loves to

run away. These are things I wasn't noticing from the other children who

have Down syndrome. seemed different. I finally convinced his doctor

that this wasn't right. He sent us to a psychologist, who by the way has a

Down syndrome child. This psychologist spent most of our time trying to

find out what Marc and I were doing wrong. Oh, I guess I must mention that

Marc and I were very young when we had . I was 22 and Marc was 23, so

everything came back as it's us and our inexperience. I knew deep down that

something else was wrong. The same feeling I had when I was pregnant with

him and that too went down as I was too young to know what I was talking

about. I finally gave up and put it in the back of my mind as a wait and

see what happens. The older he got the more I noticed him changing. He

can't communicate except to Marc and myself and still it's minimal. But,

he's smart! About the age of 2 1/2 - 3, I noticed that every time we drove

by a Mc's he would kick and scream. He would start freaking out if I

passed the street we normally turned down to go home or if I took a

different way. How does he know the route I take home. Now that he's

older, he tells us to " move over " to a different lane so we can turn down

the right street. My entire home is a parking lot for his cars. They are

all perfectly lined up in a row. When he places a coaster on a table, he

makes sure it is perfectly square and then makes sure his cup is exactly

centered on the coaster. He's known how to work our t.v. and vcr since he

was 3. If I park out front instead of the garage, he freaks out!

>

> In December of 1999, I read an article in our local Down syndrome

newsletter and it was all about DS-ASD and the article from Disability

Solutions. This was describing perfectly. I arrange a meeting with

his doctor who referred us to a developmental doctor. She diagnosed

moderately Autistic and mildly ADHD. This explained a lot. I went straight

to his teachers. was now 4 almost 5 and in special ed preschool. They

seemed shocked and didn't believe me. They said seem to them like a

typical Down syndrome child. After I started reading about Autism and some

of the characteristics, I couldn't believe that no one noticed them in

earlier. Unlike the articles I've read, I didn't have a normal Down

syndrome child first and noticed changes, was like this from the start.

This past fall he started Kindergarten. I have been frustrated all year

because the school system refuses to acknowledge the Autism. When he

started preschool, they stopped him from signing. They told us that he

won't learn to use his words if he relies on signing everything. Two years

later, we still aren't using a lot of words and now have lost all of our

signing. He doesn't sign anything. He doesn't want to sit in the class

with the kindergarteners, he wants to run away. I get notes home from the

teacher saying that during calendar time, which is the time that he is with

the kindergarteners, they have to assist him to stay in the room. His

ability level is at about a 2 1/2 - 3 year old. This is an improvement from

the three years we were stuck at an 18 month old level. He's recently

becoming aggressive too. Last weekend, we were walking through a store and

I was heading toward some windows that face the parking lot. He thought we

were leaving. When I turned down an aisle, he kicked, screamed and just as

a young girl was walking by, leaned over and hit her. When I leaned over to

tell him that that was wrong, he in turn hit me crossed the face.

>

> I have taken the summer off of work to focus on studying up on DS-ASD and

on what I need to do to help him in school. I need guidance and advice for

where to turn and what works. We are just starting over again with what

really is appropriate for . I don't feel he's benefiting from being in

the public school. They want to put him in the regular classroom for Social

Studies next year. He doesn't know what that is and the aide will spend

most of her time trying to keep him in his seat. I've been considering

sending him to a private school, there is a school for autistic children,

but I'm not sure if he would fit in there either. The town where we live is

new and their special ed program is just coming together. If I stay at the

public schools, I will have to fight for everything I need, but I am not

really sure what that is. I am willing to do it for , but I need help.

>

> I hope I haven't talked your ear off. I just wanted to let you know the

basis of my situation. I have 12 weeks to figure something out before

school begins again in fall. I would appreciate any advice, assurance and

guidance I could get.

>

> Thank you,

>

> Marc, , and Elisha Tollefson

> 11286 Covey Lane

> Frisco, TX 75035

> 972-712-3093

> tollytx@...

>

>

>

[Guest guest]

?

did you ever get the entire issue that focused on DS and autism from

Disability Solutions? I have only about 25 copies left, but would be happy

to send you one.

Joan

[Guest guest]

Hi ,

I am the mother of three the youngest with DS. I can relate to your house

looking like a parking lot. My son is 8 and lines everything up in the

house,cars,stuffed animals.video tapes etc.He was deathly afraid of ceiling

fans and windshield wipers that started when he was 1.He is much better with

the ceiling fans but still doesn't like them and the windsheild wiper thing

has finally disappeared. I am grateful that he does have speech. Zeb is in

the second grade and is in an inclusive classroom. I fight the school

constantly and it is always a battle over something or another. My school

district tends to catagorize disabilities and Zeb is the only child in this

district with an inclusive placement.It is working so far with great teachers

but a bad aide,nothing is ever perfect.I do what I think is best for Zeb but

my placement decision could change at any time. I follow my gut instinct and

so far I think I have made the right choice. Everybody's child is different

and you need to do what you think is best for your child. Good Luck

Charlyne,Pete, Caitlyn 20 LD, Zeb DS-? 8, 26 married to Tammy,2

grandaughters

[Guest guest]

:

First, let me say that i am appalled that they *stopped* him from

signing--especially when ALL the literature about signing or using any AAC

system to bridge speech delays is to the contrary. For heaven's sake, where

are these people's heads? (Ok, don't answer that). I can send you plenty

of references, even out of a TEXTBOOK (which means it's really old school

if it's made it to a text book) that says that using sign, or symbols or

voice output does nothing but facilitate speech if there is going to be

speech. Send 'em over, I want to behead them.

Ok.

On to more positive things, since that's the rules (and I made the rules).

Tell me what has available to communicate with? Anything? Have they

set up a schedule for him? Do you think he takes in the info that is in

pictures? can he understand drawings? Does he have any kind of a

choice-making system available to him?

Here's my favorite...what are his 10 favorite foods?

On the group web page (the URL will show up at the bottom of every email

for this list), there is a " bookmarks " section and a " files " section. Start

in the " bookmark " section and read through some of the folders. Some good

places to begin will be:

" books and other resources "

here you'll find some of our favorite books.

Then I would go to Visual systems

kids with autism are visual learners, so there's lots of ways to get

information across using visual systems. It's been a lifesaver for Andy and

us.

Then I think I " d go to the " social stories " folder and look around there.

Social stories are a great tool for getting information across about what

is expected.

You have a long way to go, but let's begin with the question of whether or

not your son can understand photos or symbols and maybe explore the

question of whether or not he could relearn the signing fast enough. Were

his signs " intelligible " ? Andy can't reproduce the signs, but the info goes

in. Andy hates all things fine motor.

Any chance you can come to the NDSS convention in San Diego?There'll be a

little bit of info on ds/autism there, and certainly I can help connect

youw with some folks to talk with there.

I'll send the DS/autism issue of " Disability Solutions " and some other

issues that might be helpful in the US mail.

Hang in there, !

OH, and if you need some medical journal articles to toss at your

disbelieving teachers, let me know. We have them in our archives and I need

to get them into files anyway.....They probably don't believe that you can

have ds and autism. That's an Old school belief. We can debunk that

mythology with no problem.

Joan

[Guest guest]

Welcome ! ,

First of all reward yourself for finding out all the information on

his diagonsis .My son is 12 DS/ASD/MR. , going on 13 in July . The

Disability Solution newsletter had opened the doors for me on the

right direction , this year . We have to educate ourselves and

educate everyone our child is in contact with . I agree with our

fellow e-friends , so hope you took notes , on what YOU would like

for your son for his following school year . Here is a website to

glance at on Texas school district and state district and state

Special Education Dept. and early childhood intervention contact (

http://tea.state.state.tx.us/special.ed ) or (www.advocacyinc.org).

The Texas Education Agency will provide the federal laws and the

state laws relating to students that fall along the Autism Spectrum

Disorders. To learn more about educational law and rights afforded to

you and your child , consider (www.edlaw.net). Hope this helps .

Everyone here are just SUPER !

Irma from Tx. too . , 12 , DS/ASD .

- In @y..., " TollyTX " <tollytx@h...> wrote:

> Hello,

> My name is Tollefson. I am a mother of a 6 year old son

named who has Down syndrome, Autism and ADHD and a 4 1/2 month

old daughter named Elisha. When was born, we found out that he

had Down syndrome. My husband, Marc, and I were actually o.k. with

this. We didn't care about that, in fact, after looking over our

lives as children, we weren't surprised that we were blessed with a

disabled child. I worked until was 6 months old and resigned to

concentrate on him and what he needed to be all that he could be.

had a lot of odd things about him. He didn't have any medical

problems, except for swallowing and that his trachea didn't develop

properly, but that went away in time. When he was a baby, we noticed

that when he was under a ceiling fan, he would tense up every muscle

in his body and flap his hands and gasp in air in excitement. We

thought it was cute and a good trick to show family and friends. I

mentioned it to his doctor and therapists, they didn't seem

concerned. As he got a little older, maybe around 1 1/2 - 2 years

old, I noticed him not paying much attention to others around him, he

would get frustrated very easily and act out by throwing toys at

people or hitting, he didn't really " play " with the toys, his

attention span was zero and he enjoyed to run away. He loves to run

away. These are things I wasn't noticing from the other children who

have Down syndrome. seemed different. I finally convinced his

doctor that this wasn't right. He sent us to a psychologist, who by

the way has a Down syndrome child. This psychologist spent most of

our time trying to find out what Marc and I were doing wrong. Oh, I

guess I must mention that Marc and I were very young when we had

. I was 22 and Marc was 23, so everything came back as it's us

and our inexperience. I knew deep down that something else was

wrong. The same feeling I had when I was pregnant with him and that

too went down as I was too young to know what I was talking about. I

finally gave up and put it in the back of my mind as a wait and see

what happens. The older he got the more I noticed him changing. He

can't communicate except to Marc and myself and still it's minimal.

But, he's smart! About the age of 2 1/2 - 3, I noticed that every

time we drove by a Mc's he would kick and scream. He would

start freaking out if I passed the street we normally turned down to

go home or if I took a different way. How does he know the route I

take home. Now that he's older, he tells us to " move over " to a

different lane so we can turn down the right street. My entire home

is a parking lot for his cars. They are all perfectly lined up in a

row. When he places a coaster on a table, he makes sure it is

perfectly square and then makes sure his cup is exactly centered on

the coaster. He's known how to work our t.v. and vcr since he was

3. If I park out front instead of the garage, he freaks out!

>

> In December of 1999, I read an article in our local Down syndrome

newsletter and it was all about DS-ASD and the article from

Disability Solutions. This was describing perfectly. I arrange

a meeting with his doctor who referred us to a developmental doctor.

She diagnosed moderately Autistic and mildly ADHD. This

explained a lot. I went straight to his teachers. was now 4

almost 5 and in special ed preschool. They seemed shocked and didn't

believe me. They said seem to them like a typical Down syndrome

child. After I started reading about Autism and some of the

characteristics, I couldn't believe that no one noticed them in

earlier. Unlike the articles I've read, I didn't have a normal Down

syndrome child first and noticed changes, was like this from the

start. This past fall he started Kindergarten. I have been

frustrated all year because the school system refuses to acknowledge

the Autism. When he started preschool, they stopped him from

signing. They told us that he won't learn to use his words if he

relies on signing everything. Two years later, we still aren't using

a lot of words and now have lost all of our signing. He doesn't sign

anything. He doesn't want to sit in the class with the

kindergarteners, he wants to run away. I get notes home from the

teacher saying that during calendar time, which is the time that he

is with the kindergarteners, they have to assist him to stay in the

room. His ability level is at about a 2 1/2 - 3 year old. This is

an improvement from the three years we were stuck at an 18 month old

level. He's recently becoming aggressive too. Last weekend, we were

walking through a store and I was heading toward some windows that

face the parking lot. He thought we were leaving. When I turned

down an aisle, he kicked, screamed and just as a young girl was

walking by, leaned over and hit her. When I leaned over to tell him

that that was wrong, he in turn hit me crossed the face.

>

> I have taken the summer off of work to focus on studying up on DS-

ASD and on what I need to do to help him in school. I need guidance

and advice for where to turn and what works. We are just starting

over again with what really is appropriate for . I don't feel

he's benefiting from being in the public school. They want to put

him in the regular classroom for Social Studies next year. He

doesn't know what that is and the aide will spend most of her time

trying to keep him in his seat. I've been considering sending him to

a private school, there is a school for autistic children, but I'm

not sure if he would fit in there either. The town where we live is

new and their special ed program is just coming together. If I stay

at the public schools, I will have to fight for everything I need,

but I am not really sure what that is. I am willing to do it for

, but I need help.

>

> I hope I haven't talked your ear off. I just wanted to let you

know the basis of my situation. I have 12 weeks to figure something

out before school begins again in fall. I would appreciate any

advice, assurance and guidance I could get.

>

> Thank you,

>

> Marc, , and Elisha Tollefson

> 11286 Covey Lane

> Frisco, TX 75035

> 972-712-3093

> tollytx@h...

>

>

>

[Guest guest]

Hi July,

Welcome to the group. I have 5 children and our youngest, Madison Rose

(7, DS) was dx'd with autistic spectrum disorder at the age of 5. However,

I knew something was terribly wrong and within a few months after the onset

of her autism, (18 months) was sure that the ugly monster had entered our

lives. But certain professionals convinced me that having the label would

only hurt her. I came to my senses eventually, and thankfully, just in time

to get her into the right school.

> Oh, I guess I must mention that Marc and I were very young when we had .

> I was 22 and Marc was 23, so everything came back as it's us and our

> inexperience.

Don't you just love this?!?!? You know, sometimes those *bad docs and so

called professionals* need to blame this on parents, just because they can't

comprehend it!!!! Infuriating. I'll never forget the first time we

mentioned the word autism at Maddie's IEP meeting. She was only two and the

speech therapist almost got up and walked out of the room in a furious snit.

The sped teacher had to pat her and calm her into sitting back down. I

wasn't as sure of myself and what was going on with Maddie then, but BOY OH

BOY would I have a ton of things to say to her now!!!! The school did a

total about face after spending another year with Maddie. They probably

just realized that they weren't making any progress and that sure makes it

easier to blame on autism then on themselves. All that being said, they

were an incredible group of people; once I had them in my corner. The

social worker and Maddie's teacher ended up being two of her very best

advocates (well, me and hubby were #1 of course... I'm telling you this

just so you know that people do come around.

BUT that doesn't mean they will, and it doesn't mean you should sit around on

your haunches waiting for them to *see the light*.

<<I've been considering sending him to a private school, there is a school

for autistic children, but I'm not sure if he would fit in there either. The

town where we live is new and their special ed program is just coming

together. If I stay at the public schools, I will have to fight for

everything I need, but I am not really sure what that is. I am willing to do

it for , but I need help. >>

, the only way you are going to get a real *feel* for the various

programs out there is to personally go and visit them. This is what I did.

I visited the public school classrooms (all kinds---multiply-handicapped,

life skills, emotionally disturbed, autistic support) and the private ones.

Like Maddie, I'm very visual; I need to see it......;-) It was very

helpful and I went with my gut. My hubby and I feel extremely good about

our decision on where to place Maddie and she is doing fabulously. WAY

better than we ever dreamed. It is an approved private school, paid for

through the SD and the state. We had a huge battle, but it was worth the

fight. However, every child is different. What works for Maddie may not

work for your child. So my advice is to go and spec it out.

<< I have been frustrated all year because the school system refuses to

acknowledge the Autism. When he started preschool, they stopped him from

signing. They told us that he won't learn to use his words if he relies on

signing everything. Two years later, we still aren't using a lot of words

and now have lost all of our signing. >>

Well GEE!!!! What the heck are they waiting for?!?!? Obviously, their

method isn't working. That alone makes for good argument!!!! You know a

lot of people are anti-signing because of the fear of losing verbal language,

but with kids who have autism as well, any mode of communication that works

for the child SHOULD be implemented. We use PECS with Maddie, and sign.

Her school does the ABA with her and she's flourishing. It's been a

LONG LONG road, but we're in a peaceful, growing, happy place right now. We

can't even believe she's the same child.

Anyhow, this sure got long-winded....LOL Sorry. Just remember that we

all know what you're going through. {{{{{{{{{{{{{hugs}}}}}}}}}}}

Donna

[Guest guest]

In a message dated 5/14/01 9:06:05 PM Eastern Daylight Time,

jmedlen@... writes:

> Were

> his signs " intelligible " ? Andy can't reproduce the signs, but the info goes

> in. Andy hates all things fine motor.

Oh, I forgot to mention this. Maddie can't sign back to us either. Never

could. But she comprehends them. For example, when I sign eat, she'll go

to her chair. When I sign bath, she'll go to the bathroom.

Donna

[Guest guest]

Charlyne,

Angel used to be freaked right out by ceiling fans and windshield wipers as

well. Couldn't drive in the dark either. Would scream the whole way. So I

learned to sing 'hush little baby' for hour upon hour while we drove long

trips, in order to keep her happy. She has finally desensitized to these

things. Weird fears our kids get hey!

Thanks, Cheryl

Re: Hello

> Hi ,

> I am the mother of three the youngest with DS. I can relate to your house

> looking like a parking lot. My son is 8 and lines everything up in the

> house,cars,stuffed animals.video tapes etc.He was deathly afraid of

ceiling

> fans and windshield wipers that started when he was 1.He is much better

with

> the ceiling fans but still doesn't like them and the windsheild wiper

thing

> has finally disappeared. I am grateful that he does have speech. Zeb is in

> the second grade and is in an inclusive classroom. I fight the school

> constantly and it is always a battle over something or another. My school

> district tends to catagorize disabilities and Zeb is the only child in

this

> district with an inclusive placement.It is working so far with great

teachers

> but a bad aide,nothing is ever perfect.I do what I think is best for Zeb

but

> my placement decision could change at any time. I follow my gut instinct

and

> so far I think I have made the right choice. Everybody's child is

different

> and you need to do what you think is best for your child. Good Luck

> Charlyne,Pete, Caitlyn 20 LD, Zeb DS-? 8, 26 married to Tammy,2

> grandaughters

>

>

>

[Guest guest]

Hi Cheryl,

It's amazing how innovative we can be at times just to get through the

day.Zeb still has a problem with the ceiling fans,not to the degree that he

had when he was younger. We have no ceiling fans in our house but every

restaurant in town does.Zeb loves to go out to dinner and not fast food. I

think he was met to go to some wealthy family.We have to call ahead any

restaurant and request the ceiling fans turned off and a table as far away

from a fan as possible. Zeb does not wait very well and if we are not seated

immediately he begins shouting where is the service around here.I used to

feel embarrased but now I just laugh. We get the best service.I have learned

to love Zeb for all these crazy things he does.

Charlyne

[Guest guest]

hehe, your story reminded me of a cute story of

nathan's little brother nicholas, i think it was last

year, anyways we took the boys out for pizza and a

movie, and when we were at pizza hut, it was quiet,

even nathan was sitting nicely, has taken us years to

get a few good nites out like this, and all of a

sudden nicholas loudly aks whats wrong with her she

keeps going back and forth, back and forth, everyone

there looked at us and were giggling, we were trying

not to while explaining that it was here job to do

this, she a waitress making sure everone had what they

needed. kids:). shawna

--- charlyne1121@... wrote:

> Hi Cheryl,

> It's amazing how innovative we can be at times just

> to get through the

> day.Zeb still has a problem with the ceiling

> fans,not to the degree that he

> had when he was younger. We have no ceiling fans in

> our house but every

> restaurant in town does.Zeb loves to go out to

> dinner and not fast food. I

> think he was met to go to some wealthy family.We

> have to call ahead any

> restaurant and request the ceiling fans turned off

> and a table as far away

> from a fan as possible. Zeb does not wait very well

> and if we are not seated

> immediately he begins shouting where is the service

> around here.I used to

> feel embarrased but now I just laugh. We get the

> best service.I have learned

> to love Zeb for all these crazy things he does.

> Charlyne

>

>

> [Non-text portions of this message have been

> removed]

>

>

> --------------------------------------------------

> Checkout our homepage for information,

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>

[Guest guest]

Hi July,

Welcome to the group. I hope that you can share

your experiences and that you learn from this group.

I'm a 19 yr old female college student in Texas, that

babysitts autistic kids and normal kids.

=====

Friends Till The End

__________________________________________________

[Guest guest]

,

Where are you located. I have such problems finding a babysitter around

here. My neighborhood is filled with younger kids and the older ones that

babysit don't know what to do with . I usually ask my parents or sister

to watch him, but every now and then I'd like to give them a break.

Thanks,

Re: Hello

> Hi July,

>

> Welcome to the group. I hope that you can share

> your experiences and that you learn from this group.

> I'm a 19 yr old female college student in Texas, that

> babysitts autistic kids and normal kids.

>

>

>

>

> =====

> Friends Till The End

>

> __________________________________________________

>

[Guest guest]

,

I can understand your situation and I can kindof

relate to it. I'm in Texas an hour away from Dallas

and Arlington, in McKinney, TX.

> ,

> Where are you located. I have such problems finding

> a babysitter around

> here. My neighborhood is filled with younger kids

> and the older ones that

> babysit don't know what to do with . I usually

> ask my parents or sister

> to watch him, but every now and then I'd like to

> give them a break.

> Thanks,

>

> Re: Hello

>

>

> > Hi July,

> >

> > Welcome to the group. I hope that you can

> share

> > your experiences and that you learn from this

> group.

> > I'm a 19 yr old female college student in Texas,

> that

> > babysitts autistic kids and normal kids.

> >

> >

> >

> >

> > =====

> > Friends Till The End

> >

> > __________________________________________________

> >

[Guest guest]

,

We live in Frisco. My husband and I have been aying that for once we would

like to have one night out that we don't have to worry about getting back to

pick the kids up from my parents who live in Plano. I know Frisco and Plano

are close, but when you put it all together, Leave early to drop off, go to

wherever, come back and pick up then drive home, it adds up to over an hour

of time just to drop or pick up the kids. We would like to spend that time

away doing something. Even dinner and a movie seems to long when we've got

to do all that extra traveling. Anyway it's good to know you're around.

Thank you,

Re: Hello

> >

> >

> > > Hi July,

> > >

> > > Welcome to the group. I hope that you can

> > share

> > > your experiences and that you learn from this

> > group.

> > > I'm a 19 yr old female college student in Texas,

> > that

> > > babysitts autistic kids and normal kids.

> > >

> > >

> > >

> > >

> > > =====

> > > Friends Till The End

> > >

> > > __________________________________________________

> > >

[Guest guest]

Hello

Hello, I am the mother of a 24 year old Daughter with Down Syndrome

Welcome Cat!

I'm sure a lot of us can relate to your daughter's behaviors! Some of us have

the autism diagnosis; some do not! But diagnosis or not, it really helps to be

able to connect with other families who understand! has done what you

refer to as " twinkling " for as long as I can remember...he is 14 yrs. old. He

has a terrible time with changes in his routine. He is non-verbal and doesn't

sign. I know that lots of us will really appreciate your input to this list! I

look forward to hearing more from you!

Terry