Introduction

[Guest guest]

Welcome, Kris.

I hope the group will be beneficial to you.

Ellen

Ellen Garber Bronfeldegskb@...

Introduction

Hi!

I just joined this group and would like to introduce myself. My name is Kris. I live in Streamwood and I have 2 biological children. My younger son, , is 17, and a junior in a BD/ED Special Ed program at Streamwood High School, due to depression and anxiety. My older son, , is the reason for my interest in this group.

is 21 and has a diagnosis of Asperger's Syndrome and bipolar disorder. He graduated from highschool at age 18 after going through special ed, and attended ECC for 2 years, but did not do well, except for a few classes that he was interested in and already had prior knowledge of the subject matter. He was placed on academic and financial aid probation, and stopped attending classes. is currently working part time (23 hrs. a week), at a store called the Furniture Box, assembling furniture and taking care of the warehouse. He is doing okay there, because his boss also has a special needs child, and is very understanding and supportive.

I'm in the process of trying to obtain Social Security Disability Benefits for on his deceased dad's record. He has an attorney and is presently waiting for a hearing date. He is also attempting to get his driver's license, after taking driving lessons at njoy and privately. My major concerns for my son at the moment are the social security process and his future living arrangements.

Some background on myself: I work full-time for Bank as a teller supervisor. My educational backgound is in sociology/psychology (BA from Elmhurst College). My first husband passed away in 1997 from cancer, and I am in a second marriage to Bernd, who works for Initial Security. He has 2 of his kids living with us (ages 14 and 17), as well as my 2 children, so our house can get quite chaotic at times.

Thanks for reading...

Kris

[Guest guest]

>

> Hi!

>

> I just joined this group and would like to introduce myself. My

name is Kris. I live in Streamwood and I have 2 biological

children. My younger son, , is 17, and a junior in a BD/ED

Special Ed program at Streamwood High School, due to depression and

anxiety. My older son, , is the reason for my interest in this

group.

>

> is 21 and has a diagnosis of Asperger's Syndrome and bipolar

disorder. He graduated from highschool at age 18 after going through

special ed, and attended ECC for 2 years, but did not do well, except

for a few classes that he was interested in and already had prior

knowledge of the subject matter. He was placed on academic and

financial aid probation, and stopped attending classes. is

currently working part time (23 hrs. a week), at a store called the

Furniture Box, assembling furniture and taking care of the

warehouse. He is doing okay there, because his boss also has a

special needs child, and is very understanding and supportive.

>

> I'm in the process of trying to obtain Social Security Disability

Benefits for on his deceased dad's record. He has an attorney

and is presently waiting for a hearing date. He is also attempting

to get his driver's license, after taking driving lessons at

njoy and privately. My major concerns for my son at the moment

are the social security process and his future living arrangements.

>

> Some background on myself: I work full-time for Bank as a

teller supervisor. My educational backgound is in

sociology/psychology (BA from Elmhurst College). My first husband

passed away in 1997 from cancer, and I am in a second marriage to

Bernd, who works for Initial Security. He has 2 of his kids living

with us (ages 14 and 17), as well as my 2 children, so our house can

get quite chaotic at times.

>

> Thanks for reading...

>

> Kris

Hello, and welcome to the group. I am not able to give any advice on

the dating topic b/c like others I am in a much different sit with my

14 yo son- however as a fellow '87 graduate of Nursing and

Psychology degrees from Elmhurst, and parent of a special child, I

welcome you also. What yr did you graduate from Elmhurst? Hope you

find the answers you need here!

Diane S>

[Guest guest]

Welcome. It is wonderful that you are so dedicated to your students. I hope this forum will be useful.

Ellen

Ellen Garber Bronfeldegskb@...

Introduction

- O'Fallon, St. Clair County. No children, however I am a Sp. Ed. teacher who works with students ages 14 to 21 with multiple disabilities. Most of my students run the full gamet of disabilities from students who need maximum supports to participate in their education/community to those who need only a few supports. My biggest area of interest is helping students move from the school to adulthood. However, the last few years have been more difficult as I find more and more waiting lists for services and more businesses wanting individuals who have global tasking abilities. I guess I am just trying to be the best advocate I can be for my students and am hopeful that by sharing ideas that I will do a better job.

[Guest guest]

Welcome, .

Ellen

Ellen Garber Bronfeldegskb@...

Introduction

My name is , and I live in Wheaton, DuPage County. My son Ryne is 17 and attends Wheaton North High School. He has a diagnosis of Pervasive Developmental Disorder, Not Otherwise Specified (autism). I am interested in employment and housing for Ryne. I am employed in the local school district as an inclusion aide and have had extensive training and experience with autistic and behavioral children. We have also been involved with Special Olympics for a number of years. My husbands name is Jack and we have another son who is a freshman in college.

[Guest guest]

If you have the olpportunity, start going to the DuPage transition Planning

Committee meetings. That is probably one of the more direct ways to get

info on what kinds of support exists.

Get involved in Arc trainings, which cover things like self employment,

benefits and the risks to keeping/losing, special needs trusts etc

We Grow Dreams is a nursury /greenhouse in West Chicago that is family run

with the goal to develop jobskills.work ethicf so people with dis. can be

employed.

Housing is very complex. Again, make yourself aware of what is availalbe.

DIecke Home in Lombard has openings.

Miseracordia is called " private " and they apparently maintain a waiting

list. If you are willing to work to raise money and donate money, your

child may have a " slot " there.

Center for Independent Futures in ton has done some " out of the box "

things with housing. They are also a parent based organization and do some

real good work. They will also mentor new groups that want to start up, in

case you dont want to live in ton.

I would also sugest you look at the

illinoislifespan.org

website which has many listings/referrals for dd.

Good luck, and welcome

Cindi Swanson

Information/referral specialist

Illinois Lifespan Project ,Arc of Il.

[Guest guest]

Welcome, .

It sounds as if this is the start of a beautiful relationship. I am sure many of the families can benefit from your expertise and we are all more than happy to share our stories with you!

Thanks for joining.

Ellen

Ellen Garber Bronfeldegskb@...

Introduction

Greetings Everyone,First, thanks very much to LaurieJerue, Marie Grass Amenta, and Ellen Bronfeld forforming this group. My name is Engman. I work asan employment specialist for Parents AllianceEmployment Project (www.parents-alliance.org), aDuPage County nonprofit based in Lombard that providessupported employment services to people withdisabilities. My primary responsibility is to workwith transition students who have developmentaldisabilities by preparing them forcareers and assisting them in finding a job. I lookforward to sharing strategies about job developmentand also to staying informed about the variety ofissues young people with disabilities handle in theirlives after graduating from school.__________________________________________________________Get your email and see which of your friends are online - Right on the New .com (http://www./preview)

[Guest guest]

Hello Eva,

It does sound as though is having some tough days. I know what I would

do. I'd go straight to the school and begin talking and observing. It sounds to me as though

something is happening to her that is beyond her control, and upsetting her very

much. Even if she is not behaving up to snuff-I wonder what actions they may be

taking that would so upset her that she does not want to go to school. My

sympathies are with her.

in Ma. (, 21 yrs. Charge syndrome)

[Guest guest]

Hi Eva:

What are the two schools saying about 's behavior? It sounds like something is going on; neurological?medical/physical? I am not sure punitive measures are your best bet until you have determined if this is a behavior that is within her control and if she would make the connection between her behavior (not going to school) and the punishment/consequence.

Ellen

Ellen Garber Bronfeldegskb@...

Introduction

Hello to all,I have been reading all of your past posts and am very impressed by the credentials and accomplishments of all of your members! Thank you for excepting me into this group. I'm the mother/guardian, Eva, of my daughter, . is 21 and completing her last year of public school. We live in Hoffman Estates and she attends Palatine High School and Kirk school in the afternoon. is diagnosed with PDD, mental impairment, seizure disorder since age 5, and has a 2nd chromosome anomally. She is verbal but has a lot of difficulty staying on topic and having a give and take conversation. She can read and spell very well - loves crosswords but likes to copy in the answers. Right now she seems to be having some mental crisis. She is refusing to go to school and all I can get out of her is that she keeps having bad days, meaning problems with her behavior. We have been in contact with her psychiatrist and have adjusted psych. meds. Also, she has been having more seizures of late - also, in contact with neurologist and adjusted those meds as well. I have taken away her priveleges: TV, Computer time, DVDs, Dessert, and told her she needs to earn these things by going to school - not working. I was wondering if any of you might have some suggestions, ideas. Would a clinical psychologist be a good resource and how would you go about finding one who would work with the developmentally disabled? (I'm also trying to deal with the transition into adult health care - thanks for that article!)

[Guest guest]

Debbie,

Welcome to the group. I hope your trial and possible implant goes well. I

have an SCS for low back/leg nerve damage so I can not speak specifically

how it works for the neck.

I agree, some of the questions on the psych exam are really off the wall. I

don't recall the glass question being asked. That's an interesting one.

Best wishes for success and a speedy recovery.

(Mass.)

_____

From: Stimulator [mailto:Stimulator ] On

Behalf Of Debbie Lee

Sent: Tuesday, November 21, 2006 4:17 PM

Stimulator

Subject: Introduction

I just wanted to take a minute to introduce myself to the list. I am

scheduled for my SCS trial on 1/10/07. If all goes well the permanant

one is scheduled for 1/17/07. I have had chronic neck pain for years.

I don't know the initial cause of my problems as it is something that

developed slowly over the years as opposed to a known accident. I've

been diagnosed with facet & disc arthritis, pinched nerves, damaged

discs, bone spurs, a stretch injury to my nerves & a congenital

abnormaility. I feel very fortunate to have found a pain doctor that

I really like that takes the time to listen to me. We have gone the

injection route with epidurals, nerve blocks, nerve root blocks &

facet joint injections. None of the injections have helped, the

injections themselves were very painful & they made things hurt worse

for a week or so after each procedure.

Most of the posts I've read have been regarding back or leg pain.

Does anyone have experience with the SCS for neck pain?

How does this procedure compare pain wise to the injections? Since

the injections were so painful for me does that mean the procedure

will be very painful as well? I know that I'll have to deal with the

additional pain from the incision for the generator.

I just had my psych exam. The doctor never talked to me. He just had

me complete some connect the dots tests & answer a BUNCH of questions.

Some of the questions were very random & then they'd ask me if I

wanted to kill any of my doctors. (I was glad I could answer that 1

with never). One of the questions really threw me. It asked if I

was allergic to the glass found in jars. Thinking back on it that was

1 of the questions I had to answer when I started with this pain

doctor. Does anyone know what is the point of this question? Is

there a big problem with people being allergic to glass or is there

some hidden meaning to this questions?

Sorry for the long post. Any help or advice would be appreciated.

Thanks, have a good Thanksgiving

Debbie Lee

outside of Louisville, KY

[Guest guest]

Thanks, Tony, and welcome to the group! I seem to recall you telling me some time ago that you'd heard about IPADD thru your school's transition coordinator? For some who may not know, what part of the state is ville in?

introduction

Hi everyone, I just wanted to take a moment to introduce myself. Myname is Tony Duenas and I am currently a special education teacher inville, IL but I wear quite a few hats. I have been teaching for 11 years and have seen some changes in theway school districts do things. I have also been in the insurancearena where I focused my business in the area of Special Needs Trust,medicaid, SSI/SSDI, Transition, IEP planning and the financial side ofthings. I am familiar with guardianship but most of this is given tothe attorney I work with. I give mini-seminars on all these topics hasI have been fortunate enough to work hands-on with all areas. I am notgoing to claim I know it all but I do know where to go to find theanswers... I hope I can contribute in some way to the group. I know I have helped my sister who son has Down's and while I canunderstand how much she goes through, I do not pretend to know how itfeels... so I hope to meet many of you and I hope to help anyone I can..Tony

[Guest guest]

Tony,

Welcome to the group as well. I am originally from Godfrey, Il. and

know exactly where vile is. I have two autistic children,

one daugher who is 16 yrs old, HFA. I also have a son who is 3 1/2

yrs old who is autistic. I have lived in Chicago area for almost 20

yrs, but I am considering moving back home due to the fact that I

now have two autistic children and no family help. I was

considering moving to ville.

Can you give me any idea how the programs and support services are

there for young for children with autism? I have heard ville

has a great school district, but I have not heard anything regarding

there special ed services? Both my parents are retired

administrators from the Alton and ville/ville school

districts.

Thank You,

-- In IPADDUnite , " hskylvr99 " <hskylvr99@...> wrote:

>

> Hi everyone, I just wanted to take a moment to introduce myself. My

> name is Tony Duenas and I am currently a special education teacher

in

> ville, IL but I wear quite a few hats.

>

> I have been teaching for 11 years and have seen some changes in the

> way school districts do things. I have also been in the insurance

> arena where I focused my business in the area of Special Needs

Trust,

> medicaid, SSI/SSDI, Transition, IEP planning and the financial

side of

> things. I am familiar with guardianship but most of this is given

to

> the attorney I work with. I give mini-seminars on all these topics

has

> I have been fortunate enough to work hands-on with all areas. I am

not

> going to claim I know it all but I do know where to go to find the

> answers... I hope I can contribute in some way to the group.

> I know I have helped my sister who son has Down's and while I can

> understand how much she goes through, I do not pretend to know how

it

> feels... so I hope to meet many of you and I hope to help anyone I

can..

> Tony

>

[Guest guest]

We are very glad to have representation from far south!

Thanks for joining and being willing to share your experiences and knowledge.

Ellen

Ellen Garber Bronfeldegskb@...

introduction> > > Hi everyone, I just wanted to take a moment to introduce myself. My> name is Tony Duenas and I am currently a special education teacher in> ville, IL but I wear quite a few hats. > > I have been teaching for 11 years and have seen some changes in the> way school districts do things. I have also been in the insurance> arena where I focused my business in the area of Special Needs Trust,> medicaid, SSI/SSDI, Transition, IEP planning and the financial side of> things. I am familiar with guardianship but most of this is given to> the attorney I work with. I give mini-seminars on all these topics has> I have been fortunate enough to work hands-on with all areas. I am not> going to claim I know it all but I do know where to go to find the> answers... I hope I can contribute in some way to the group. > I know I have helped my sister who son has Down's and while I can> understand how much she goes through, I do not pretend to know how it> feels... so I hope to meet many of you and I hope to help anyone Ican..> Tony>

[Guest guest]

Dear Glen, wellcome to the group. We wish you and your son and family to find

the best tools and possibilities for touching true peace, development and joy of

positive changes.

Best wishes to your great family.

Svetlana Masgutova and Hawryluk.

Glen Braden <glenbraden@...> wrote:

Hello everyone,

My name is Glen Braden and I live in Hong Kong, China.

My son Tully (age 9) has global delays and emotional / attachment

issues.

We have tried all sorts of OT and PT, Speech therapies and sensory

integration techniques; all the while feeling we were only taking on

part of the problem with any one thing.

Donna Sun, a friend from our church asked us if we would be willing

to have Tully see her regularly to try something new she was studying

and we thought, we'll try anything for a while to see how it goes.

9 months later, after some ups and downs, we brought Tully to

Livermore this summer to go through the family workshop with Svetlana

and the team.

Tully made some noticeable improvements in several areas including

his emotional swings. We are continuing at home and will start back

up visits with Donna in September.

Pray for continued growth and development.

Thanks,

Glen

---------------------------------

Park yourself in front of a world of choices in alternative vehicles.

Visit the Auto Green Center.

[Guest guest]

Hi , and welcome. I hope you are not confused, but IPADD

focuses mainly on the needs of older children and adults with

disabilities. Parents, siblings and professionals are members of

our group. I hope you will be able to use the information you find

here or find confort in those of us who have already been through

some of what you are experiencing. Perhaps someone on the List has

had similar experiences as you.

Marie, co-moderator

>

> Hi,

>

> I recently joined this group and wanted to share why I'm here. My

4

> 1/2 year old son has an undiagnosed syndrome. He has

> microcephaly, GERD, low muscle tone, bilateral ptosis (corrected

> with surgery), bilateral clubfeet (corrected with surgeries,

casting,

> braces), left kidney has hydronephrosis due to Grade 3 reflux,

right

> kidney had cysts on the upper 20% which turned to scar tissue and

it

> has reflux as well (this kidney is small and doesn't function very

> well), undescended testes (corrected with surgery), small for his

> age, global developmental delays (developmentally that of an 18-

24

> month old and he has moderate to severe MR), autistic tendencies

(but

> not autistic because he's extremely social...per numerous

doctors),

> epicanthal folds, hypoplastic nails, curved pinkes, overlapping

toes,

> and the list goes on.

>

> The doctors have done many tests on him and everything comes back

> normal. So he is our mystery boy.

>

> is absolutely adorable. He is able to walk (although he

does

> have a wide gait, falls often and tires easily). He knows some

sign

> language, is trying to talk but cannot make many sounds so his

words

> are approximations and only understood by those very close to him,

> and he's working with a Might Mo (although he still looks at it

as a

> toy). He loves people...he waves hi and blows kisses to everybody

> (especially strangers)....it's sweet and people are drawn to him

> because of this. However, it's scary that he's so willing to go

with

> a stranger.

>

> I dearly love my sweet . He has taught me so much and has

> brought us so much joy.

>

> Thanks for reading,

>

> St Clair County

>

[Guest guest]

:

Thanks for sharing your story.

The love you have for your son is truly inspirational and at this time of

thanksgiving, it lends just the right touch of sentiment, in my opinion.

It sounds like your is one lucky boy to have you for his Mom!

Ellen

Ellen Garber Bronfeld

egskb@...

Introduction

Hi,

I recently joined this group and wanted to share why I'm here. My 4

1/2 year old son has an undiagnosed syndrome. He has

microcephaly, GERD, low muscle tone, bilateral ptosis (corrected

with surgery), bilateral clubfeet (corrected with surgeries, casting,

braces), left kidney has hydronephrosis due to Grade 3 reflux, right

kidney had cysts on the upper 20% which turned to scar tissue and it

has reflux as well (this kidney is small and doesn't function very

well), undescended testes (corrected with surgery), small for his

age, global developmental delays (developmentally that of an 18-24

month old and he has moderate to severe MR), autistic tendencies (but

not autistic because he's extremely social...per numerous doctors),

epicanthal folds, hypoplastic nails, curved pinkes, overlapping toes,

and the list goes on.

The doctors have done many tests on him and everything comes back

normal. So he is our mystery boy.

is absolutely adorable. He is able to walk (although he does

have a wide gait, falls often and tires easily). He knows some sign

language, is trying to talk but cannot make many sounds so his words

are approximations and only understood by those very close to him,

and he's working with a Might Mo (although he still looks at it as a

toy). He loves people...he waves hi and blows kisses to everybody

(especially strangers)....it's sweet and people are drawn to him

because of this. However, it's scary that he's so willing to go with

a stranger.

I dearly love my sweet . He has taught me so much and has

brought us so much joy.

Thanks for reading,

St Clair County

[Guest guest]

Hi,

I realize that is very young and just starting his journey.

However, I'm the type of person who believes in gathering information

and being prepared. Plus, the last 4 years have flown by so I'm

guessing the next 14 will fly by as well. I also know that I have

learned the most from other parents so maybe at some point I may have

a question regarding school, etc that somebody may have some input

on. I doubt I'll be very active on this group but that doesn't mean

I'm not reading and learning

Thanks so much,

> >

> > Hi,

> >

> > I recently joined this group and wanted to share why I'm here.

My

> 4

> > 1/2 year old son has an undiagnosed syndrome. He has

> > microcephaly, GERD, low muscle tone, bilateral ptosis (corrected

> > with surgery), bilateral clubfeet (corrected with surgeries,

> casting,

> > braces), left kidney has hydronephrosis due to Grade 3 reflux,

> right

> > kidney had cysts on the upper 20% which turned to scar tissue and

> it

> > has reflux as well (this kidney is small and doesn't function

very

> > well), undescended testes (corrected with surgery), small for his

> > age, global developmental delays (developmentally that of an 18-

> 24

> > month old and he has moderate to severe MR), autistic tendencies

> (but

> > not autistic because he's extremely social...per numerous

> doctors),

> > epicanthal folds, hypoplastic nails, curved pinkes, overlapping

> toes,

> > and the list goes on.

> >

> > The doctors have done many tests on him and everything comes back

> > normal. So he is our mystery boy.

> >

> > is absolutely adorable. He is able to walk (although he

> does

> > have a wide gait, falls often and tires easily). He knows some

> sign

> > language, is trying to talk but cannot make many sounds so his

> words

> > are approximations and only understood by those very close to

him,

> > and he's working with a Might Mo (although he still looks at it

> as a

> > toy). He loves people...he waves hi and blows kisses to

everybody

> > (especially strangers)....it's sweet and people are drawn to him

> > because of this. However, it's scary that he's so willing to go

> with

> > a stranger.

> >

> > I dearly love my sweet . He has taught me so much and has

> > brought us so much joy.

> >

> > Thanks for reading,

> >

> > St Clair County

> >

>

[Guest guest]

Thank you :0)

>

> :

> Thanks for sharing your story.

> The love you have for your son is truly inspirational and at this

time of thanksgiving, it lends just the right touch of sentiment, in

my opinion.

> It sounds like your is one lucky boy to have you for his Mom!

> Ellen

>

> Ellen Garber Bronfeld

> egskb@...

> Introduction

>

>

> Hi,

>

> I recently joined this group and wanted to share why I'm here. My

4

> 1/2 year old son has an undiagnosed syndrome. He has

> microcephaly, GERD, low muscle tone, bilateral ptosis (corrected

> with surgery), bilateral clubfeet (corrected with surgeries,

casting,

> braces), left kidney has hydronephrosis due to Grade 3 reflux,

right

> kidney had cysts on the upper 20% which turned to scar tissue and

it

> has reflux as well (this kidney is small and doesn't function

very

> well), undescended testes (corrected with surgery), small for his

> age, global developmental delays (developmentally that of an 18-

24

> month old and he has moderate to severe MR), autistic tendencies

(but

> not autistic because he's extremely social...per numerous

doctors),

> epicanthal folds, hypoplastic nails, curved pinkes, overlapping

toes,

> and the list goes on.

>

> The doctors have done many tests on him and everything comes back

> normal. So he is our mystery boy.

>

> is absolutely adorable. He is able to walk (although he

does

> have a wide gait, falls often and tires easily). He knows some

sign

> language, is trying to talk but cannot make many sounds so his

words

> are approximations and only understood by those very close to

him,

> and he's working with a Might Mo (although he still looks at it

as a

> toy). He loves people...he waves hi and blows kisses to everybody

> (especially strangers)....it's sweet and people are drawn to him

> because of this. However, it's scary that he's so willing to go

with

> a stranger.

>

> I dearly love my sweet . He has taught me so much and has

> brought us so much joy.

>

> Thanks for reading,

>

> St Clair County

>

>

>

>

>

>

[Guest guest]

We look forward to journeying with you and , and learning from one

another.

We are so happy to have family advocates joining us sooner than later. You are

right; the time will go by quickly and when the school bus stops coming you will

be knowledgable and you will have plans in place for so that his

transition to adulthood will be successful!

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Introduction

Hi,

I realize that is very young and just starting his journey.

However, I'm the type of person who believes in gathering information

and being prepared. Plus, the last 4 years have flown by so I'm

guessing the next 14 will fly by as well. I also know that I have

learned the most from other parents so maybe at some point I may have

a question regarding school, etc that somebody may have some input

on. I doubt I'll be very active on this group but that doesn't mean

I'm not reading and learning

Thanks so much,

> >

> > Hi,

> >

> > I recently joined this group and wanted to share why I'm here.

My

> 4

> > 1/2 year old son has an undiagnosed syndrome. He has

> > microcephaly, GERD, low muscle tone, bilateral ptosis (corrected

> > with surgery), bilateral clubfeet (corrected with surgeries,

> casting,

> > braces), left kidney has hydronephrosis due to Grade 3 reflux,

> right

> > kidney had cysts on the upper 20% which turned to scar tissue and

> it

> > has reflux as well (this kidney is small and doesn't function

very

> > well), undescended testes (corrected with surgery), small for his

> > age, global developmental delays (developmentally that of an 18-

> 24

> > month old and he has moderate to severe MR), autistic tendencies

> (but

> > not autistic because he's extremely social...per numerous

> doctors),

> > epicanthal folds, hypoplastic nails, curved pinkes, overlapping

> toes,

> > and the list goes on.

> >

> > The doctors have done many tests on him and everything comes back

> > normal. So he is our mystery boy.

> >

> > is absolutely adorable. He is able to walk (although he

> does

> > have a wide gait, falls often and tires easily). He knows some

> sign

> > language, is trying to talk but cannot make many sounds so his

> words

> > are approximations and only understood by those very close to

him,

> > and he's working with a Might Mo (although he still looks at it

> as a

> > toy). He loves people...he waves hi and blows kisses to

everybody

> > (especially strangers)....it's sweet and people are drawn to him

> > because of this. However, it's scary that he's so willing to go

> with

> > a stranger.

> >

> > I dearly love my sweet . He has taught me so much and has

> > brought us so much joy.

> >

> > Thanks for reading,

> >

> > St Clair County

> >

>

[Guest guest]

I was worried you didn't understand our focus. I think many of us

wish we had banded together sooner, rather than later, and it is

daunting in the beginning of your journey to have all this

info " hit " you. Glad you understand and are revving up.

It's interesting that you use the term, " journey " . I have almost

finished my book about our son--a sequel to my husband's children's

book--and the title is " is STILL Extra-Special: A Book About

an Autism Journey " . Many of us feel we are on a journey. Where we

end up is anyone's guess and how we get there is an adventure--no

one takes the same route.

Glad to have you and welcome again. If you don't understand what

we're talking about at anytime, please speak up. So many of us are

so used to this crazy, disability lingo, we forget folks may not

have been exposed before.

Oh, my son has autism, is nonverbal, uses American Sign Language and

is 27 years old.

Marie

> > >

> > > Hi,

> > >

> > > I recently joined this group and wanted to share why I'm

here.

> My

> > 4

> > > 1/2 year old son has an undiagnosed syndrome. He has

> > > microcephaly, GERD, low muscle tone, bilateral ptosis

(corrected

> > > with surgery), bilateral clubfeet (corrected with surgeries,

> > casting,

> > > braces), left kidney has hydronephrosis due to Grade 3 reflux,

> > right

> > > kidney had cysts on the upper 20% which turned to scar tissue

and

> > it

> > > has reflux as well (this kidney is small and doesn't function

> very

> > > well), undescended testes (corrected with surgery), small for

his

> > > age, global developmental delays (developmentally that of an

18-

> > 24

> > > month old and he has moderate to severe MR), autistic

tendencies

> > (but

> > > not autistic because he's extremely social...per numerous

> > doctors),

> > > epicanthal folds, hypoplastic nails, curved pinkes,

overlapping

> > toes,

> > > and the list goes on.

> > >

> > > The doctors have done many tests on him and everything comes

back

> > > normal. So he is our mystery boy.

> > >

> > > is absolutely adorable. He is able to walk (although he

> > does

> > > have a wide gait, falls often and tires easily). He knows

some

> > sign

> > > language, is trying to talk but cannot make many sounds so his

> > words

> > > are approximations and only understood by those very close to

> him,

> > > and he's working with a Might Mo (although he still looks at

it

> > as a

> > > toy). He loves people...he waves hi and blows kisses to

> everybody

> > > (especially strangers)....it's sweet and people are drawn to

him

> > > because of this. However, it's scary that he's so willing to

go

> > with

> > > a stranger.

> > >

> > > I dearly love my sweet . He has taught me so much and

has

> > > brought us so much joy.

> > >

> > > Thanks for reading,

> > >

> > > St Clair County

> > >

> >

>

[Guest guest]

Hi and welcome!! This is a great group, I also don't post much but read.?

My son is now 15.7 and a sophomore at Downers Grove North.? He's high

functioning autistic and like Marie said it's a journey, it's a marathon not a

sprint in my opinion, things get easier then they get harder, it can be an up

and down thing but fortunately for me has become quite independent,

gradually and over time just like any other teenager.

Happy Thanksgiving!

PS:? Where is St. Clair County?

Re: Introduction

I was worried you didn't understand our focus. I think many of us

wish we had banded together sooner, rather than later, and it is

daunting in the beginning of your journey to have all this

info " hit " you. Glad you understand and are revving up.

It's interesting that you use the term, " journey " . I have almost

finished my book about our son--a sequel to my husband's children's

book--and the title is " is STILL Extra-Special: A Book About

an Autism Journey " . Many of us feel we are on a journey. Where we

end up is anyone's guess and how we get there is an adventure--no

one takes the same route.

Glad to have you and welcome again. If you don't understand what

we're talking about at anytime, please speak up. So many of us are

so used to this crazy, disability lingo, we forget folks may not

have been exposed before.

Oh, my son has autism, is nonverbal, uses American Sign Language and

is 27 years old.

Marie

> > >

> > > Hi,

> > >

> > > I recently joined this group and wanted to share why I'm

here.

> My

> > 4

> > > 1/2 year old son has an undiagnosed syndrome. He has

> > > microcephaly, GERD, low muscle tone, bilateral ptosis

(corrected

> > > with surgery), bilateral clubfeet (corrected with surgeries,

> > casting,

> > > braces), left kidney has hydronephrosis due to Grade 3 reflux,

> > right

> > > kidney had cysts on the upper 20% which turned to scar tissue

and

> > it

> > > has reflux as well (this kidney is small and doesn't function

> very

> > > well), undescended testes (corrected with surgery), small for

his

> > > age, global developmental delays (developmentally that of an

18-

> > 24

> > > month old and he has moderate to severe MR), autistic

tendencies

> > (but

> > > not autistic because he's extremely social...per numerous

> > doctors),

> > > epicanthal folds, hypoplastic nails, curved pinkes,

overlapping

> > toes,

> > > and the list goes on.

> > >

> > > The doctors have done many tests on him and everything comes

back

> > > normal. So he is our mystery boy.

> > >

> > > is absolutely adorable. He is able to walk (although he

> > does

> > > have a wide gait, falls often and tires easily). He knows

some

> > sign

> > > language, is trying to talk but cannot make many sounds so his

> > words

> > > are approximations and only understood by those very close to

> him,

> > > and he's working with a Might Mo (although he still looks at

it

> > as a

> > > toy). He loves people...he waves hi and blows kisses to

> everybody

> > > (especially strangers)....it's sweet and people are drawn to

him

> > > because of this. However, it's scary that he's so willing to

go

> > with

> > > a stranger.

> > >

> > > I dearly love my sweet . He has taught me so much and

has

> > > brought us so much joy.

> > >

> > > Thanks for reading,

> > >

> > > St Clair County

> > >

> >

>

[Guest guest]

In a message dated 11/22/2007 8:24:36 P.M. Eastern Standard Time,

ludwig33@... writes:

" is STILL Extra-Special: A Book

About an Autism Journey " .

I know your husbands book! We have it in the library at the autism agency

where I have worked for 13 years. It was one of the first children's books we

had I think.

My daughter took part in writing what I think is a wonderful children's book

called In Our Own Words: Stories by Brothers and Sisters of children with

Autism. She was 12 when she wrote her story for the book. 11 other children

shared their stories too.

My Andy is 22 and for years I have wanted to write a book about our

experiences with him having Autism, then developing Strep induced Tourettes

just

before he turned 11 and finally getting a diagnosis of Bipolar at age 12 1/2.

We

have had a very rocky journey at times and having a child with multiple

diagnosis, especially bipolar turns the whole Autism thing on it's head.

Well, maybe someday...

Oh and good luck with your book. I will be looking for it when it comes out!!

Jan

**************************************Check out AOL's list of 2007's hottest

products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

[Guest guest]

Hi,

St. Clair County is in Southern Illinois near St. Louis, MO.

Take care,

> > > >

> > > > Hi,

> > > >

> > > > I recently joined this group and wanted to share why I'm

> here.

> > My

> > > 4

> > > > 1/2 year old son has an undiagnosed syndrome. He has

> > > > microcephaly, GERD, low muscle tone, bilateral ptosis

> (corrected

> > > > with surgery), bilateral clubfeet (corrected with surgeries,

> > > casting,

> > > > braces), left kidney has hydronephrosis due to Grade 3

reflux,

> > > right

> > > > kidney had cysts on the upper 20% which turned to scar tissue

> and

> > > it

> > > > has reflux as well (this kidney is small and doesn't function

> > very

> > > > well), undescended testes (corrected with surgery), small for

> his

> > > > age, global developmental delays (developmentally that of an

> 18-

> > > 24

> > > > month old and he has moderate to severe MR), autistic

> tendencies

> > > (but

> > > > not autistic because he's extremely social...per numerous

> > > doctors),

> > > > epicanthal folds, hypoplastic nails, curved pinkes,

> overlapping

> > > toes,

> > > > and the list goes on.

> > > >

> > > > The doctors have done many tests on him and everything comes

> back

> > > > normal. So he is our mystery boy.

> > > >

> > > > is absolutely adorable. He is able to walk (although

he

> > > does

> > > > have a wide gait, falls often and tires easily). He knows

> some

> > > sign

> > > > language, is trying to talk but cannot make many sounds so

his

> > > words

> > > > are approximations and only understood by those very close to

> > him,

> > > > and he's working with a Might Mo (although he still looks at

> it

> > > as a

> > > > toy). He loves people...he waves hi and blows kisses to

> > everybody

> > > > (especially strangers)....it's sweet and people are drawn to

> him

> > > > because of this. However, it's scary that he's so willing to

> go

> > > with

> > > > a stranger.

> > > >

> > > > I dearly love my sweet . He has taught me so much and

> has

> > > > brought us so much joy.

> > > >

> > > > Thanks for reading,

> > > >

> > > > St Clair County

> > > >

> > >

> >

>

>

>

>

>

>

[Guest guest]

Hi,

When I first joined I didn't realize what the group was about until I

started to read the messages and saw the intro on the home page. So

I do appreciate you making certain I understood what the group was

about.

I guess I started thinking of it as a " journey " after I read " Welcome

to Holland. " It's great that you are writing a book. I have

actually thought about writing one as well. There is so much I want

other parents to know when they first start this journey...things I

wish I would have known about. What's the name of your husbands first

book?

Take care,

> > > >

> > > > Hi,

> > > >

> > > > I recently joined this group and wanted to share why I'm

> here.

> > My

> > > 4

> > > > 1/2 year old son has an undiagnosed syndrome. He has

> > > > microcephaly, GERD, low muscle tone, bilateral ptosis

> (corrected

> > > > with surgery), bilateral clubfeet (corrected with surgeries,

> > > casting,

> > > > braces), left kidney has hydronephrosis due to Grade 3

reflux,

> > > right

> > > > kidney had cysts on the upper 20% which turned to scar tissue

> and

> > > it

> > > > has reflux as well (this kidney is small and doesn't function

> > very

> > > > well), undescended testes (corrected with surgery), small for

> his

> > > > age, global developmental delays (developmentally that of an

> 18-

> > > 24

> > > > month old and he has moderate to severe MR), autistic

> tendencies

> > > (but

> > > > not autistic because he's extremely social...per numerous

> > > doctors),

> > > > epicanthal folds, hypoplastic nails, curved pinkes,

> overlapping

> > > toes,

> > > > and the list goes on.

> > > >

> > > > The doctors have done many tests on him and everything comes

> back

> > > > normal. So he is our mystery boy.

> > > >

> > > > is absolutely adorable. He is able to walk (although

he

> > > does

> > > > have a wide gait, falls often and tires easily). He knows

> some

> > > sign

> > > > language, is trying to talk but cannot make many sounds so

his

> > > words

> > > > are approximations and only understood by those very close to

> > him,

> > > > and he's working with a Might Mo (although he still looks at

> it

> > > as a

> > > > toy). He loves people...he waves hi and blows kisses to

> > everybody

> > > > (especially strangers)....it's sweet and people are drawn to

> him

> > > > because of this. However, it's scary that he's so willing to

> go

> > > with

> > > > a stranger.

> > > >

> > > > I dearly love my sweet . He has taught me so much and

> has

> > > > brought us so much joy.

> > > >

> > > > Thanks for reading,

> > > >

> > > > St Clair County

> > > >

> > >

> >

>

[Guest guest]

Mu husband's book is " is Extra-Special: A Book About Autism

for Children " --I begain mine about 5 years ago, when Russ aged out

of school, figuring I would have much more time (yeah, right)and am

just about finished. I only thought about doing it because every

time I went to an national autism conference, someone would ask me

about and at a conference in 1999, a friend from our state

society suggested I wirte a book, You can get our book on Amazon or

perhaps in your library--it's in its third printing! My book is a

collection of essays ( it didn't start out that way!)about various

things, every thing from guilt ('natch)to how we handle holidays

(I'll post that essay on Sunday), to a wonderful, normal day that

was so special in my children's childhoods. It's about a little bit

of everything you can think of. I don't pull punches, either,

especially about some of the things especially associated with the

autism " Refrigerator Mother " , 'it's the mother's fault " stuff. That

may not be of interest to anyone except those with kids with autism!

I remember the first time I read the Holland thing in the fall of

1987 (my memories of reading it are in the book, too!). was

7, and my husband was a resident at the U of Chicago. I think it

was in Ann Landers column (or was it Abby?)and I read it and wept.

I clipped it out and it remained on the bulletin board in my kitchen

until it fell apart and replaced the next time she printed it.

There's a " Holland, Schmolland " --or something like that and a bunch

of copycat ones. You may not be ready to read those--gotta be old

and cynical to stomache 'em.

Glad you're here, as long as you know what's up.

Marie

> > > > >

> > > > > Hi,

> > > > >

> > > > > I recently joined this group and wanted to share why I'm

> > here.

> > > My

> > > > 4

> > > > > 1/2 year old son has an undiagnosed syndrome. He

has

> > > > > microcephaly, GERD, low muscle tone, bilateral ptosis

> > (corrected

> > > > > with surgery), bilateral clubfeet (corrected with

surgeries,

> > > > casting,

> > > > > braces), left kidney has hydronephrosis due to Grade 3

> reflux,

> > > > right

> > > > > kidney had cysts on the upper 20% which turned to scar

tissue

> > and

> > > > it

> > > > > has reflux as well (this kidney is small and doesn't

function

> > > very

> > > > > well), undescended testes (corrected with surgery), small

for

> > his

> > > > > age, global developmental delays (developmentally that of

an

> > 18-

> > > > 24

> > > > > month old and he has moderate to severe MR), autistic

> > tendencies

> > > > (but

> > > > > not autistic because he's extremely social...per numerous

> > > > doctors),

> > > > > epicanthal folds, hypoplastic nails, curved pinkes,

> > overlapping

> > > > toes,

> > > > > and the list goes on.

> > > > >

> > > > > The doctors have done many tests on him and everything

comes

> > back

> > > > > normal. So he is our mystery boy.

> > > > >

> > > > > is absolutely adorable. He is able to walk

(although

> he

> > > > does

> > > > > have a wide gait, falls often and tires easily). He knows

> > some

> > > > sign

> > > > > language, is trying to talk but cannot make many sounds so

> his

> > > > words

> > > > > are approximations and only understood by those very close

to

> > > him,

> > > > > and he's working with a Might Mo (although he still looks

at

> > it

> > > > as a

> > > > > toy). He loves people...he waves hi and blows kisses to

> > > everybody

> > > > > (especially strangers)....it's sweet and people are drawn

to

> > him

> > > > > because of this. However, it's scary that he's so willing

to

> > go

> > > > with

> > > > > a stranger.

> > > > >

> > > > > I dearly love my sweet . He has taught me so much

and

> > has

> > > > > brought us so much joy.

> > > > >

> > > > > Thanks for reading,

> > > > >

> > > > > St Clair County

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Jan, what agency was it? It's everywhere! I think I read that sibs

book when it came out--it was very good. We try to keep on top of

other children's books on autism. Chuck may update the resources at

the end of his book when mine is published but that seems to be the

only thing out of date with hsi book.

I want to ask you if I may give your e-mail addy to a mom with child

with autism who has suddenly developed " vocal tics " (he's 13, I

think)on another autism news list? I suggested Tourettes but

everyone pooh-poohed me saying it's gotta be because of strep--I

think it's interesting we both may be correct. I think she needs to

explore the Tourettes angle. I may invite the mom to join IPADD

just so she can connect with you!

Marie

>

>

> In a message dated 11/22/2007 8:24:36 P.M. Eastern Standard Time,

> ludwig33@... writes:

>

> " is STILL Extra-Special: A Book

> About an Autism Journey " .

> I know your husbands book! We have it in the library at the

autism agency

> where I have worked for 13 years. It was one of the first

children's books we

> had I think.

> My daughter took part in writing what I think is a wonderful

children's book

> called In Our Own Words: Stories by Brothers and Sisters of

children with

> Autism. She was 12 when she wrote her story for the book. 11

other children

> shared their stories too.

> My Andy is 22 and for years I have wanted to write a book about

our

> experiences with him having Autism, then developing Strep induced

Tourettes just

> before he turned 11 and finally getting a diagnosis of Bipolar at

age 12 1/2. We

> have had a very rocky journey at times and having a child with

multiple

> diagnosis, especially bipolar turns the whole Autism thing on

it's head.

> Well, maybe someday...

>

> Oh and good luck with your book. I will be looking for it when it

comes out!!

>

> Jan

>

>

>

>

>

> **************************************Check out AOL's list of

2007's hottest

> products.

> (http://money.aol.com/special/hot-products-2007?

NCID=aoltop00030000000001)

>

>

>