Introduction

[Guest guest]

Carol, a/p surgery, is this anterior and posterior? If so yes. If not please let

me know what A/P is. 1st surgery fused me from L4 to S1 and 2nd from T4 to S1.

Thanks for writing. Kris

Re: Introduction

Kris. I was curious to know if you had the A/P surgery when you had your

recent revision. Usually the revision surgery takes care of the leaning

forward problem. Were you fused to the sacrum.? Just wondering. Take

care,

Carol...(Long Island)NY

...here's my stats

Harrington rod fusion surgery- 1974 in NYC at 17 years old. It was about

a 40 degree double major S curve. I went about 10 years when symptoms of

flatback were on the horizon. Got married at 29 and had 3 great kids..no

problems there. The flatback became very noticeable in 2000 when I was

" finally " - properly diagnosed with H.A.R.M.S.. Gone downhill since. It's

pretty severe now. Severe stenosis, chronic pain, and of course-the

leaning forward deal. I haven't been able to straighten up in 4 days. I

am wondering if it is temporary or permanent at this point.? I kind of

lean to one side too -due to the extreme pain on the left side of my

lumbar area where it is bone on bone at this point. : O

I guess I must look kind of funny now. A little quasimotto-ish, LOL My

eyes and teeth look good though. LOL I got my hair done recently so I

try to keep some semblance of self esteem in tact. OY. I have my revision

Doc lined up. This was after 4 years and 3 revision doctors opinions.

So, it's only a matter of time now for me. I know it's getting shorter

though. Trying to get up and function is a real challenge for me now. My

oldest daughter almost has her drivers licence now so that will be a

relief for sure. Take care, nice to meet you, and Kris and all the new

members of the Feisty group.

Carol

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

>>Hi, I am new to this group, but not to scoliosis. I had my first

surgeries in 1976 (16years old) at Children's Hospital in Boston.

All was fine until about 1995, this is when I first noticed myself

leaning forward. At the end of the day my back was tired, but not

too bad. At this point I had three children (then two more by

1999). I did not know anything about flat back. In 2001, I fell

playing basketball with the kids. This is when all the pain

started. I had revision surgery in 2003, this took away most of the

pain for a while, but I am still leaning forward. Now the pain is

starting to come back again (mostly in my hips and legs). I am

looking into more surgery. Doctors are hopeful to get me straight,

but the thought of another surgery stinks!!! It is hard to arrange

for my family to get by through all the time it takes for surgery

and recovery. But I am exhausted from leaning forward, it makes

anything I have to do standing very difficult. Thanks for

listening, Kris

________________________________________________________________

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

[Guest guest]

Hi Kris. Yes A/P was meant as Anterior /posterior. I was just curious why

that didn't " fix " the leaning over you have now? I was told that is why

they go in through the front was to fix it so you can stand straight up

again? ?? just wondering?

Carol

>>>>>>>>>> " Carol, a/p surgery, is this anterior and posterior? If so yes.

If not please let me know what A/P is. 1st surgery fused me from L4 to S1

and 2nd from T4 to S1. Thanks for writing. Kris

________________________________________________________________

The best thing to hit the Internet in years - Juno SpeedBand!

Surf the Web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

Kris,

I'm sure I'm not the only one cringing in sorrow to hear that another

Feisty needs more surgery, after already going through so much. I'm

hoping you'll tell us more about yourself -- I'm not sure I am

understanding your history right. I got lost on whether you've had

two spine surgeries or three. You had scoliosis surgery long ago but

had a fairly short fusion (L4 - S1), right? How bad was your curve

back then and was it just in your lower back? Did they use a

Harrington Rod back then (and if so did they take it out during the

revision surgery and replace it with different instrumentation)? Why

did you have to have so much of your spine fused subsequent to that

first surgery - did your side to side curve progress?

Can someone refresh my memory on what an osteophyte is?

Also, if a fusion is real solid, does that usually pose problems for

doing a successful osteotomy? Will your next surgery be less complex

than the last one?

Lastly, did your doc have a lot of experience with scoliosis and

revision surgeries?

Oh also, I know I sound like a broken record, but for those having

hip pain, I always think it's a good idea to find a doc who

specializes in hips, have a hip x-ray and make sure he tells you the

status of it before coming to any final decision about future spine

surgery..... Sorry for all the questions - I am obsessed with trying

to figure out why some people have continued problems and some don't

(I know, I know, that's impossible, but I can't seem to stop

myself!). Thanks for any extra info. you will give and sure hope that

the future will be brighter for you.

loriann

> Carol, a/p surgery, is this anterior and posterior? If so yes. If

not please let me know what A/P is. 1st surgery fused me from L4 to

S1 and 2nd from T4 to S1. Thanks for writing. Kris

[Guest guest]



Hello Everyone,

I'm finally getting around to introducing myself after reading all the comments and information flowing back and forth, up and down, sideways (have I covered the 3 basic dimensions - inside joke for Brain Gymers). This is such a wealth of information and connection. Thank you all for your interest, questions, sharing, help and expertise.

I am Pam Whitman, M.A., licensed Brain Gym Instructor/Consultant, Brain Gym International Board Member and a Brain Gym NorCal Network Coordinator. I'm helping bring Svetlana here for her class. And we're very energized by the response we're having for our informational meeting coming up this Sat. at my home here in Orinda, CA.

I have been formally in Brain Gym since 1998, and I teach Brain Gym 101 and optimal Brain Organization. I think of myself as a creative and positive teacher who honors each person’s unique learning style. I love working with individuals as well as teaching. I'm a very kinesthetic, hands on, get on the floor or wherever practitioner with my clients and I have my private practice in Orinda, as well as teaching throughout the US. I also sponsor many Brain Gym courses in Northern California. (925-253-1223, pwbraingym@...)

I've been using Svetlana's reflex work in combination with Brain Gym for 3 years now and had success working with Alzheimers, Autism, ADD, ADHD, brain injury, basic stress and mental blocks and work with adults, children and seniors alike.

I hope to meet some of you soon!

"The true object of all human life is play."G.K. Chesterton

Pam WhitmanBrain Gym Consultant/Instructor and Life Coach58 Van Ripper LaneOrinda, CA 94563925-253-1223

[Guest guest]

Dear Sue,

You may want to contact Mariya Masters in Eugene, OR, mariya@.... She is a Brain Gym consultant and knows Svea Gold well. She has also had Svetlana's class,

My Inner Child: Intergration of Lifelong Reflexes and Reactions into Movement Development. She's planning to attend Svetlana's February class.

There is also Rose Harrow, rainroser@..., in Seattle who has studied with Svetlana as well.

The key in turning on and learning the developmental reflexes is giving the body the opportunity to experience them. That's where the pressure on the body comes into play in Svetlana's work. We're giving the body the chance to feel the muscles organize and move against the pressure with the conscious intention of doing so. It moves us into intentional response and out of reactive or stuck body movement. We then give the body practice for integration of the reflex and for use in our automatic movements.

I hope this was helpful.

"The true object of all human life is play."G.K. Chesterton

Pam WhitmanBrain Gym Consultant/Instructor and Life Coach58 Van Ripper LaneOrinda, CA 94563925-253-1223

[Guest guest]

Welcome Andy: This is a great group. Hope this message reaches you.

gordon age 70 diag 2-02 Cll/sll.. I had RFin 02 and relapsed 9-05. In

W/W. I had a second opinion at MDA in Dec.

Gach <unclewolf@...> wrote:

Hello Everybody

I'm a new member, 75, diagnosed with CLL 12/05 and I'm taking a crash Internet

course on hemotology.

I joined the list about a week ago, but haven't been getting any email from this

list. I emailed the list owner, but got no reply. I seem to be in limbo here!

Andy

[Guest guest]

Hi Gordon,

Yes, since I sent email to the list I've been getting messages regularly.

I'm glad to be part of this Internet community, listening to and talking to

people about things important to all of us.

Andy

Re: Introduction

> Welcome Andy: This is a great group. Hope this message reaches you.

>

> gordon age 70 diag 2-02 Cll/sll.. I had RFin 02 and relapsed 9-05.

> In W/W. I had a second opinion at MDA in Dec.

>

> Gach <unclewolf@...> wrote:

> Hello Everybody

>

> I'm a new member, 75, diagnosed with CLL 12/05 and I'm taking a crash

> Internet course on hemotology.

>

> I joined the list about a week ago, but haven't been getting any email

> from this list. I emailed the list owner, but got no reply. I seem to be

> in limbo here!

>

> Andy

>

>

[Guest guest]

>

Dear Andy,

Welcome to our group, I am a young 60 year old and I envy all of you that

have reached 3/4 of a century.

Living with CLL has been ok with me I am in stage IV but keepping well.

There are many good web sites there for information, if you look at our

British web site, we have a list of useful sites and they are organised by

subject, country etc.

www.cllsupport.org.uk

regards

Chonette (UK)

dx 10-02 (aged 57)

doing treatment at the moment

> Message: 1

> Date: Thu, 16 Feb 2006 13:16:01 -0800

> From: " Gach " <unclewolf@...>

> Subject: Introduction

>

> Hello Everybody

>

> I'm a new member, 75, diagnosed with CLL 12/05 and I'm taking a crash

Internet course on hemotology.

>

> I joined the list about a week ago, but haven't been getting any email

from this list. I emailed the list owner, but got no reply. I seem to be

in limbo here!

>

> Andy

[Guest guest]

Dear Andy,

I also want to welcome you to a great group of people. This is one of the web

sites that has no agenda except to help fellow patients.

I also want to talk with you about your CLL medical situation, so let me know

privately if you want me to air it publicly here or in private. I have stepped

on a few toes by my open and frank nature and I don't want to do that again

here, but I do want to talk with you about a few medical issues concerning

things I think you should know.

Let me know, Thanks, Kurt thel.g@...

-------------- Original message --------------

From: " Chonette " <ch@...>

>

Dear Andy,

Welcome to our group, I am a young 60 year old and I envy all of you that

have reached 3/4 of a century.

[Guest guest]

Hi Kurt,

Either way is fine. I'm sure I have much to learn from you.

Andy

Re: Re: Introduction

> Dear Andy,

>

> I also want to welcome you to a great group of people. This is one of the

> web sites that has no agenda except to help fellow patients.

>

> I also want to talk with you about your CLL medical situation, so let me

> know privately if you want me to air it publicly here or in private. I

> have stepped on a few toes by my open and frank nature and I don't want to

> do that again here, but I do want to talk with you about a few medical

> issues concerning things I think you should know.

>

>

> Let me know, Thanks, Kurt thel.g@...

>

> -------------- Original message --------------

> From: " Chonette " <ch@...>

>

>

>>

> Dear Andy,

> Welcome to our group, I am a young 60 year old and I envy all of you that

> have reached 3/4 of a century.

>

>

[Guest guest]

Hello Kathy. This is Trish whom you met with my son Andy at Target some time back. I don't think anyone in this group has a DS child my son's age who is 34. I hope I can connect with someone with a DS adult child because I feel I can be of little help to those who have young DS children. I know the road I have walked and I know that we continue to help Andy accomplish in all he wants to do. I hope you were able to contact my Daughter who lives in Plymouth. She has been tutoring Andy, as I told you before, in his reading. He is doing great and the book is: "Teach Your Child To Read In 100 Easy Lessons" by Siegfired Engelmann for all you parents who want your child to read and may be told like we were that they can't. Yes they can! has proved with her own Brother just how well our DS kids can and do learn to read. I hope to hear back from you. Take care. Trish PS Andy's album is on the mishawakadownsyndrome sight if anyone

cares to see it.Kathy Ratkiewicz <Kathy_R@...> wrote: Hi everyone- I know many of you from other listservs, and am very happy to have you hereJ I have seen names from people I haven’t heard from in years, and that is very cool, too. It will be nice to catch up with what has been happening with all of you. For those of you that I haven’t “met”, my name is Kathy-my husband, , and I have 7 kids whose ages range from 23 yrs to almost 8 yrs. Danny, our youngest, has Ds, hypothyroidism, and a repaired AV canal heart defect. He is a complete ham, loves dressing up, and is a budding practical jokester(thanks to intensive training from his sibs) His website is here: http://mypage.iusb.edu/~jratkiew/ In my other life (B4KIDS;-) I was a pediatrics nurse for many years. Even though I had nursing experience, when Danny was born, I found that I knew virtually nothing about Ds. Certainly nothing very encouraging. I listened to the Ds ‘experts’ for several months, but basically all they gave me were worst case scenario info. When I finally got so depressed that I couldn’t stand it anymore, I connected with other parents, and that was one of the best things that ever happened to me. Instead of gloom and doom, I finally found hope. Parents on the listservs were incredibly giving of their time in their efforts to help me understand the basics of

Ds……Ginger Houston Ludlam and Romero were especially helpful to me in those early days. Once we got Danny on the ‘right track’ as far as his health went, (nutrivene D and med for his thyroid when he was 16 months old made a HUGE difference in his health) I decided that I wanted to learn everything that I could about Ds so that I could be an informed advocate for him. And somewhere along the way I turned into an information junkie;-) I am very pro-life and strongly believe that the right to life should not be tied in to a person’s IQ or level of function. Thanks for joining us here. I look forward to getting to know

all of you better. KathyR (wife to , and mom to (23)(21) (19) (16) (13) Sam (almost 11) and Danny(almost 8)

[Guest guest]

Hi Trish-

It is so funny that you posted, because Carol

and I were talking on the phone today, and she said that she hoped that parents

who had young adult/adult children would post, too, because you have so much to

offer parents of younger kids. I told Carol about Andy after I spoke to you a

few weeks ago, because I was so impressed with your comments about Andy

learning to read more fluently at age 33 than he had been able to before. When

I talked to Carol today, I told her that you had signed up for the listserv, so

I would contact you and ask you to post some things about Andy…and here

you are;-) Cool.

(I met Andy and Trish about a year ago,

and was so impressed by him…he is a very engaging and handsome young man

(he agrees;-)

Trish- you will need to upload Andy’s

pictures to the website for this listserv, too…members here don’t

have access to michianadownsyndrome.

KathyR

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of Trish

Sent: Tuesday, June 13, 2006 9:23

PM

Down Syndrome Treatment

Subject: Re:

introduction

Hello Kathy. This is Trish whom you met with my son Andy

at Target some time back. I don't think anyone in this group has a DS child my

son's age who is 34. I hope I can connect with someone with a DS adult child

because I feel I can be of little help to those who have young DS children. I

know the road I have walked and I know that we continue to help Andy accomplish

in all he wants to do. I hope you were able to contact my Daughter who

lives in Plymouth.

She has been tutoring Andy, as I told you before, in his reading. He is doing

great and the book is: " Teach Your Child To Read In 100 Easy Lessons "

by Siegfired Engelmann for all you parents who want your child to read and

may be told like we were that they can't. Yes they can! has proved with

her own Brother just how well our DS kids can and do learn to read. I hope to

hear back from you. Take care. Trish PS Andy's album is on the

mishawakadownsyndrome sight if anyone cares to see it.

Kathy Ratkiewicz

<Kathy_R@...> wrote:

Hi everyone-

I know many of you from

other listservs, and am very happy to have you hereJ I

have seen names from people I haven’t heard from in years, and that is

very cool, too. It will be nice to catch up with what has been happening with

all of you.

For those of you that I

haven’t “met”, my name is Kathy-my husband, , and I have

7 kids whose ages range from 23 yrs to almost 8 yrs. Danny, our youngest, has

Ds, hypothyroidism, and a repaired AV canal heart defect. He is a complete ham,

loves dressing up, and is a budding practical jokester(thanks to

intensive training from his sibs)

His website is here:

http://mypage.iusb.edu/~jratkiew/

In my other life

(B4KIDS;-) I was a pediatrics nurse for many years. Even though I had

nursing experience, when Danny was born, I found that I knew virtually nothing

about Ds. Certainly nothing very encouraging. I listened to the Ds

‘experts’ for several months, but basically all they gave me were

worst case scenario info. When I finally got so depressed that I couldn’t

stand it anymore, I connected with other parents, and that was one of the best

things that ever happened to me. Instead of gloom and doom, I finally found

hope. Parents on the listservs were incredibly giving of their time in their

efforts to help me understand the basics of Ds……Ginger Houston

Ludlam and Romero

were especially helpful to me in those early days. Once we got Danny on the

‘right track’ as far as his health went, (nutrivene D and med for

his thyroid when he was 16 months old made a HUGE difference in his health) I

decided that I wanted to learn everything that I could about Ds so that I could

be an informed advocate for him. And somewhere along the way I turned into an

information junkie;-)

I am very pro-life and

strongly believe that the right to life should not be tied in to a

person’s IQ or level of function.

Thanks for joining us

here. I look forward to getting to know all of you better.

KathyR (wife to , and

mom to (23)(21) (19) (16) (13) Sam (almost 11) and

Danny(almost 8)

[Guest guest]

Hi again Kathy. Andy's picture album is on Listserve and on 360 Thanks for the encouragement because I have been feeling like there is no one really interested in getting to know my son or us. We are still feeling pretty new since it hasn't been two years since we moved here from NM. I think people just have their own relationships and not wanting to get into another. Time will tell but in the meantime, I haven't been able to find anyone until recently, who could tell me how to get in touch with Special Olympics here. I need to try to find out something because I am told it is listed in the phone book under "Special Olympics". It is late so I need to head for bed. I am more than happy to answer any questions and be of help to anyone who would like to know about my Andy and his life up to now. He will be 35 this Sept. and I

warn him all the time he is not to talk about his Birthday until the last member in the family has had theirs before his LOL He will tell us all year long otherwise! Thanks for writing me back so quickly. I did write down the name of the book my Daughter (who holds a Masters Degree in Education)uses in tutoring Andy in his reading. She has also taught him how to play the piano using a number system. Andy has many talents which is simply amazing to us remembering when he was a baby we were led to believe Andy would not be able to do anything. It was right then I determined, yes he would! He has accomplished more than many thought he would and he continues to amaze people and us. Also, please note that we didn't know Andy had DS until he was four months old. The Drs. suspected when he was 3 mos. he may have DS but it took a whole month to grow out his chromozones at that time. What a horrible time of waiting and still not knowing anything about DS. Andy proudly tells

people "I am a Down Syndrome boy." Kathy Ratkiewicz <Kathy_R@...> wrote: Hi Trish- It is so funny that you posted, because Carol and I were talking on the phone today, and she said that she hoped that parents who had

young adult/adult children would post, too, because you have so much to offer parents of younger kids. I told Carol about Andy after I spoke to you a few weeks ago, because I was so impressed with your comments about Andy learning to read more fluently at age 33 than he had been able to before. When I talked to Carol today, I told her that you had signed up for the listserv, so I would contact you and ask you to post some things about Andy…and here you are;-) Cool. (I met Andy and Trish about a year ago, and was so impressed by him…he is a very engaging and handsome young man (he agrees;-) Trish- you will need to upload Andy’s pictures to the website for this listserv, too…members here don’t have access to michianadownsyndrome. KathyR From:

Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of Trish Sent: Tuesday, June 13, 2006 9:23 PMDown Syndrome Treatment Subject: Re: introduction Hello Kathy. This is Trish whom you met with my son Andy at Target some time back. I don't think anyone in this group has a DS child my son's age who is 34. I hope I can connect with someone

with a DS adult child because I feel I can be of little help to those who have young DS children. I know the road I have walked and I know that we continue to help Andy accomplish in all he wants to do. I hope you were able to contact my Daughter who lives in Plymouth. She has been tutoring Andy, as I told you before, in his reading. He is doing great and the book is: "Teach Your Child To Read In 100 Easy Lessons" by Siegfired Engelmann for all you parents who want your child to read and may be told like we were that they can't. Yes they can! has proved with her own Brother just how well our DS kids can and do learn to read. I hope to hear back from you. Take care. Trish PS Andy's album is on the mishawakadownsyndrome sight if anyone cares to see it.Kathy Ratkiewicz <Kathy_R@...> wrote: Hi everyone- I know many of you from other listservs, and am very happy to have you hereJ I have seen names from people I haven’t heard from in years, and that is very cool, too. It will be nice to catch up with what has been happening with all of you. For those of you that I haven’t “met”, my name is Kathy-my husband, , and I have 7 kids whose ages range from 23 yrs to almost 8 yrs. Danny, our youngest, has Ds, hypothyroidism, and a repaired AV canal heart defect. He is a complete ham, loves dressing up, and is a budding practical jokester(thanks to intensive training from his sibs) His website is here: http://mypage.iusb.edu/~jratkiew/ In my other life

(B4KIDS;-) I was a pediatrics nurse for many years. Even though I had nursing experience, when Danny was born, I found that I knew virtually nothing about Ds. Certainly nothing very encouraging. I listened to the Ds ‘experts’ for several months, but basically all they gave me were worst case scenario info. When I finally got so depressed that I couldn’t stand it anymore, I connected with other parents, and that was one of the best things that ever happened to me. Instead of gloom and doom, I finally found hope. Parents on the listservs were incredibly giving of their time in their efforts to help me understand the basics of Ds……Ginger Houston Ludlam and Romero were especially helpful to me in those early days. Once we got Danny on the ‘right track’ as far as his health went, (nutrivene D and med for his thyroid when he was 16 months old made a HUGE difference in his health) I decided that I wanted to learn everything that I could about Ds

so that I could be an informed advocate for him. And somewhere along the way I turned into an information junkie;-) I am very pro-life and strongly believe that the right to life should not be tied in to a person’s IQ or level of function. Thanks for joining us here. I look forward to getting to know all of you better. KathyR (wife to , and mom to (23)(21) (19) (16) (13) Sam

(almost 11) and Danny(almost 8)

[Guest guest]

Welcome to the group, Trish! I know a mother of a 30 year old man with Down Syndrome. I just sent her the link to join this group.

Qadoshyah

*Got Down Syndrome?

www.gotdownsyndrome.net

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of Trish Sent: Tuesday, June 13, 2006 6:23 PMDown Syndrome Treatment Subject: Re: introduction

Hello Kathy. This is Trish whom you met with my son Andy at Target some time back. I don't think anyone in this group has a DS child my son's age who is 34. I hope I can connect with someone with a DS adult child because I feel I can be of little help to those who have young DS children. I know the road I have walked and I know that we continue to help Andy accomplish in all he wants to do. I hope you were able to contact my Daughter who lives in Plymouth. She has been tutoring Andy, as I told you before, in his reading. He is doing great and the book is: "Teach Your Child To Read In 100 Easy Lessons" by Siegfired Engelmann for all you parents who want your child to read and may be told like we were that they can't. Yes they can! has proved with her own Brother just how well our DS kids can and do learn to read. I hope to hear back from you. Take care. Trish PS Andy's album is on the mishawakadownsyndrome sight if anyone cares to see it.Kathy Ratkiewicz <Kathy_R@...> wrote:

Hi everyone-

I know many of you from other listservs, and am very happy to have you hereJ I have seen names from people I haven’t heard from in years, and that is very cool, too. It will be nice to catch up with what has ben happening with all of you.

For those of you that I haven’t “met”, my name is Kathy-my husband, , and I have 7 kids whose ages range from 23 yrs to almost 8 yrs. Danny, our youngest, has Ds, hypothyroidism, and a repaired AV canal heart defect. He is a complete ham, loves dressing up, and is a budding practical jokester(thanks to intensive training from his sibs)

His website is here: http://mypage.iusb.edu/~jratkiew/

In my other life (BK IDS;-) I was a pediatrics nurse for many years. Even though I had nursing experience, when Danny was born, I found that I knew virtually nothing about Ds. Certainly nothing very encouraging. I listened to the Ds ‘experts’ for several months, but basically all they gave me were worst case scenario info. When I finally got so depressed that I couldn’t stand it anymore, I connected with other parents, and that was one of the best things that ever happened to me. Instead of gloom and doom, I finally found hope. Parents on the listservs were incredibly giving of their time in their efforts to help me understand the basics of Ds……Ginger Houston Ludlam and Romero were especially helpful to me in those early days. Once we got Danny on the ‘right track’ as far as his health went, (nutrivene D and med for his thyroid when he was 16 months old made a HUGE difference in his health) I decided that I wanted to learn everything that I could about Ds so that I could be an informed advocate for him. And somewhere along the way I turned into an information junkie;-)

I am very pro-life and strongly believe that the right to life should not be tied in to a person’s IQ or level of function.

Thanks for joining us here. I look forward to getting to know all of you better.

KathyR (wife to , and mom to (23)(21) (19) (16) (13) Sam (almost 11) and Danny(almost 8)

[Guest guest]

Hi Trish ! I am very GLAD you are here and I bet you have LOTS to offer those of us with younger kids. :-)

That is so kewl Andy is learning to read!!! How much time is your daughter having to spend on the lessons?

Tell us how things were when he was born. What is you birth story? I was asked if we were going to take our home too! She was born in 2000... then when she got to the NICU they asked us if we wanted just to let her DIE... some things take a long time to change.

What did Andy do for school? What does he like to do now? And what pitfalls, if any, could you tell us about so we could maybe avoid it.

--Carol in IL

-------------- Original message -------------- From: Trish <andy2trish@...>

Hi again Kathy. Andy's picture album is on Listserve and on 360

Thanks for the encouragement because I have been feeling like there is no one really interested in getting to know my son or us. We are still feeling pretty new since it hasn't been two years since we moved here from NM. I think people just have their own relationships and not wanting to get into another. Time will tell but in the meantime, I haven't been able to find anyone until recently, who could tell me how to get in touch with Special Olympics here. I need to try to find out something because I am told it is listed in the phone book under "Special Olympics".

It is late so I need to head for bed. I am more than happy to answer any questions and be of help to anyone who would like to know about my Andy and his life up to now. He will be 35 this Sept. and I warn him all the time he is not to talk about his Birthday until the last member in the family has had theirs before his LOL He will tell us all year long otherwise! Thanks for writing me back so quickly. I did write down the name of the book my Daughter (who holds a Masters Degree in Education)uses in tutoring Andy in his reading. She has also taught him how to play the piano using a number system. Andy has many talents which is simply amazing to us remembering when he was a baby we were led to believe Andy would not be able to do anything. It was right then I determined, yes he would! He has accomplished more than many thought he would and he continues to amaze people and us. Also, please note that we didn't know Andy had DS until

he was four months old. The Drs. suspected when he was 3 mos. he may have DS but it took a whole month to grow out his chromozones at that time. What a horrible time of waiting and still not knowing anything about DS. Andy proudly tells people "I am a Down Syndrome boy."

Kathy Ratkiewicz <Kathy_R@...> wrote:

Hi Trish-

It is so funny that you posted, because Carol and I were talking on the phone today, and she said that she hoped that parents who had young adult/adult children would post, too, because you have so much to offer parents of younger kids. I told Carol about Andy after I spoke to you a few weeks ago, because I was so impressed with your comments about Andy learning to read more fluently at age 33 than he had been able to before. When I talked to Carol today, I told her that you had signed up for the listserv, so I would contact you and ask you to post some things about Andy…and here you are;-) Cool.

(I met Andy and Trish about a year ago, and was so impressed by him…he is a very engaging and handsome young man (he agrees;-)

Trish- you will need to upload Andy’s pictures to the website for this listserv, too…members here don’t have access to michianadownsyndrome.

KathyR

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of Trish Sent: Tuesday, June 13, 2006 9:23 PMDown Syndrome Treatment Subject: Re: introduction

Hello Kathy. This is Trish whom you met with my son Andy at Target some time back. I don't think anyone in this group has a DS child my son's age who is 34. I hope I can connect with someone with a DS adult child because I feel I can be of little help to those who have young DS children. I know the road I have walked and I know that we continue to help Andy accomplish in all he wants to do. I hope you were able to contact my Daughter who lives in Plymouth. She has been tutoring Andy, as I told you before, in his reading. He is doing great and the book is: "Teach Your Child To Read In 100 Easy Lessons" by Siegfired Engelmann for all you parents who want your child to read and may be told like we were that they can't. Yes they can! has proved with her own Brother just how well our DS kids can and do learn to read. I hope to hear back from y

ou. Take care. Trish PS Andy's album is on the mishawakadownsyndrome sight if anyone cares to see it.Kathy Ratkiewicz <Kathy_R@...> wrote:

Hi everyone-

I know many of you from other listservs, and am very happy to have you hereJ I have seen names from people I haven’t heard from in years, and that is very cool, too. It will be nice to catch up with what has been happening with all of you.

For those of you that I haven’t “met”, my name is Kathy-my husband, , and I have 7 kids whose ages range from 23 yrs to almost 8 yrs. Danny, our youngest, has Ds, hypothyroidism, and a repaired AV canal heart defect. He is a complete ham, loves dressing up, and is a budding practical jokester(thanks to intensive training from his sibs)

His website is here: http://mypage.iusb.edu/~jratkiew/

In my other life (B4KIDS;-) I was a pediatrics nurse for many years. Even though I had nursing experience, when Danny was born, I found that I knew virtually nothing about Ds. Certainly nothing very encouraging. I listened to the Ds ‘experts’ for several months, but basically all they gave me were worst case scenario info. When I finally got so depressed that I couldn’t stand it anymore, I connected with other parents, and that was one of the best things that ever happened to me. Instead of gloom and doom, I finally found hope. Parents on the listservs were incredibly giving of their time in their efforts to help me understand the basics of Ds……Ginger Houston Ludlam and Romero were especially helpful to me in those early days. Once we got Danny on the ‘right track’ as far as his health went, (nutrivene D and med f

or his thyroid when he was 16 months old made a HUGE difference in his health) I decided that I wanted to learn everything that I could about Ds so that I could be an informed advocate for him. And somewhere along the way I turned into an information junkie;-)

I am very pro-life and strongly believe that the right to life should not be tied in to a person’s IQ or level of function.

Thanks for joining us here. I look forward to getting to know all of you better.

KathyR (wife to , and mom to (23)(21) (19) (16) (13) Sam (almost 11) and Danny(almost 8)

[Guest guest]

Thank you! I wonder if I have met she and her son already. I have met several people with older DS adult children. Andy always enjoys seeing other DS people. You know how they always spot one another, it's cute! Andy's picture album is on this site now if you want to see a pic of him. Hoppin' Herd of Hares <feargod@...> wrote: Welcome to the group, Trish! I know a mother of a 30 year old man with Down Syndrome. I

just sent her the link to join this group. Qadoshyah *Got Down Syndrome? www.gotdownsyndrome.net From:

Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of Trish Sent: Tuesday, June 13, 2006 6:23 PMDown Syndrome Treatment Subject: Re: introduction Hello Kathy. This is Trish whom you met with my son Andy at Target some time back. I don't think anyone in this group has a DS child my son's age who is 34. I hope I can connect with someone with a DS adult child because I feel I can be of little help to those who have young DS children. I know the road I have walked and I know that we continue to help Andy accomplish in all he wants to do. I hope you were able to contact my Daughter who lives in Plymouth. She has been tutoring Andy, as I told you before, in his reading. He is doing great and the book is: "Teach Your Child To Read In 100 Easy

Lessons" by Siegfired Engelmann for all you parents who want your child to read and may be told like we were that they can't. Yes they can! has proved with her own Brother just how well our DS kids can and do learn to read. I hope to hear back from you. Take care. Trish PS Andy's album is on the mishawakadownsyndrome sight if anyone cares to see it.Kathy Ratkiewicz <Kathy_R@...> wrote: Hi everyone- I know many of you from other listservs, and am very happy to have you

hereJ I have seen names from people I haven’t heard from in years, and that is very cool, too. It will be nice to catch up with what has ben happening with all of you. For those of you that I haven’t “met”, my name is Kathy-my husband, , and I have 7 kids whose ages range from 23 yrs to almost 8 yrs. Danny, our youngest, has Ds, hypothyroidism, and a repaired AV canal heart defect. He is a complete ham, loves dressing up, and is a budding practical jokester(thanks to intensive training from his sibs) His website is here: http://mypage.iusb.edu/~jratkiew/ In my other life (BK IDS;-) I was a pediatrics nurse for many years. Even though I had nursing experience, when Danny was born, I found that I knew virtually nothing about Ds. Certainly nothing very encouraging. I listened to the Ds ‘experts’ for several months, but basically all they gave me were worst case scenario info. When I finally got so depressed that I couldn’t stand it anymore, I connected with other parents, and that was one of the best things that ever happened to me. Instead of gloom and doom, I finally found hope. Parents on the listservs were

incredibly giving of their time in their efforts to help me understand the basics of Ds……Ginger Houston Ludlam and Romero were especially helpful to me in those early days. Once we got Danny on the ‘right track’ as far as his health went, (nutrivene D and med for his thyroid when he was 16 months old made a HUGE difference in his health) I decided that I wanted to learn everything that I could about Ds so that I could be an informed advocate for him. And somewhere along the way I turned into an information junkie;-) I am very pro-life and strongly believe that the right to life should not be tied in to a person’s IQ or level of function. Thanks for joining us here. I look forward to getting to know all of you better. KathyR (wife to , and mom to (23)(21) (19) (16) (13) Sam (almost 11) and Danny(almost 8)

[Guest guest]

She lives in Minnesota and her name is Ginger . . . her son's name is Dan.

Qadoshyah

*Got Down Syndrome?

www.gotdownsyndrome.net

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of Trish Sent: Wednesday, June 14, 2006 9:06 PMDown Syndrome Treatment Subject: RE: introduction

Thank you! I wonder if I have met she and her son already. I have met several people with older DS adult children. Andy always enjoys seeing other DS people. You know how they always spot one another, it's cute! Andy's picture album is on this site now if you want to see a pic of him. Hoppin' Herd of Hares <feargod@...> wrote:

Welcome to the group, Trish! I know a mother of a 30 year old man with Down Syndrome. I just sent her the link to join this group.

Qadoshyah

*Got Down Syndrome?

www.gotdownsyndrome.net

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of Trish Sent: Tuesday, June 13, 2006 6:23 PMDown Syndrome Treatment Subject: Re: introduction

Hello Kathy. This is Trish whom you met with my son Andy at Target some time back. I don't think anyone in this group has a DS child my son's age who is 34. I hope I can connect with someone with a DS adult child because I feel I can be of little help to those who have young DS children. I know the road I have walked and I know that we continue to help Andy accomplish in all he wants to do. I hope you were able to contact my Daughter who lives in Plymouth. She has been tutoring Andy, as I told you before, in his reading. He is doing great and the book is: "Teach Your Child To Read In 100 Easy Lessons" by Siegfired Engelmann for all you parents who want your child to read and may be told like we were that they can't. Yes they can! has proved with her own Brother just how well our DS kids can and do learn to read. I hope to hear back from you. Take care. Trish PS Andy's album is on the mishawakadownsyndrome sight if anyone cares to see it.Kathy Ratkiewicz <Kathy_R@...> wrote:

Hi everyone-

I know many of you from other listservs, and am very happy to have you hereJ I have seen names from people I haven’t heard from in years, and that is very cool, too. It will be nice to catch up with what has ben happening with all of you.

For those of you that I haven’t “met”, my name is Kathy-my husband, , and I have 7 kids whose ages range from 23 yrs to almost 8 yrs. Danny, our youngest, has Ds, hypothyroidism, and a repaired AV canal heart defect. He is a complete ham, loves dressing up, and is a budding practical jokester(thanks to intensive training from his sibs)

His website is here: http://mypage.iusb.edu/~jratkiew/

In my other life (BK IDS;-) I was a pediatrics nurse for many years. Even though I had nursing experience, when Danny was born, I found that I knew virtually nothing about Ds. Certainly nothing very encouraging. I listened to the Ds ‘experts’ for several months, but basically all they gave me were worst case scenario info. When I finally got so depressed that I couldn’t stand it anymore, I connected with other parents, and that was one of the best things that ever happened to me. Instead of gloom and doom, I finally found hope. Parents on the listservs were incredibly giving of their time in their efforts to help me understand the basics of Ds……Ginger Houston Ludlam and Romero were especially helpful to me in those early days. Once we got Danny on the ‘right track’ as far as his health went, (nutrivene D and med for his thyroid when he was 16 months old made a HUGE difference in his health) I decided that I wanted to learn everything that I could about Ds so that I could be an informed advocate for him. And somewhere along the way I turned into an information junkie;-)

I am very pro-life and strongly believe that the right to life should not be tied in to a person’s IQ or level of function.

Thanksfor joining us here. I look forward to getting to know all of you better.

KathyR (wife to , and mom to (23)(21) (19) (16) (13) Sam (almost 11) and Danny(almost 8)

[Guest guest]

Awww...... thank you and very happy to see you here!!!

--Carol in IL

-------------- Original message -------------- From: Müller <mueller-winter@...>

Hello all,

my name is and some of you already know me from another DS-list.

My wife Saskia, daughter Nora-Jane/5yrs. and our little star of the show /18mo/DS/GERD live in Zurich, Switzerland - yes, on the other side of the big pond. We started TNI & fishoil with when he was just 2 weeks old and added Piracetam about 5 months later. Last December 's reflux worsened to the extent of his doctors wanting to operate him (fundoplication) and have him tube fed after that. Well, we managed to do without all their wisdom, because *** A VERY NICE LADY ON THIS LIST *** introduced us to SCD (Specific Carb. Diet) which virtually saved his life! (Carol, here's me praising you again, can't help it).

I've joined this list because you Americans are light years ahead of us in Switzerland concerning OT, PT, speech therapy, mainstreaming and many things more, which at times can be a bit frustrating, but nevertheless very inspiring as well!

Cheers :-),

[Guest guest]

>

> A quick introduction tho I think you might know me already...

>

> L.

> Grayslake, Father to Evan (13/Autism) and Dylan(11/PDD) Wife

Suzanne

> (compulsive shopper lol)

> Current President-Autism Society of Illinois...

> my goals are to find treatment and advice on how to help my children

while

> hopefully helping other families across the state...

>

Welcome, .

Look forward to dialogue with you!

Ellen

[Guest guest]

In a message dated 9/12/2006 2:26:03 P.M. Central Standard Time, egskb@... writes:

>> A quick introduction tho I think you might know me already...> > L. > Grayslake, Father to Evan (13/Autism) and Dylan(11/PDD) Wife Suzanne > (compulsive shopper lol)> Current President-Autism Society of Illinois...> my goals are to find treatment and advice on how to help my children while > hopefully helping other families across the state...>Welcome, .Look forward to dialogue with you!Ellen

[Guest guest]

> >

> > A quick introduction tho I think you might know me already...

> >

> > L.

> > Grayslake, Father to Evan (13/Autism) and Dylan(11/PDD) Wife

> Suzanne

> > (compulsive shopper lol)

> > Current President-Autism Society of Illinois...

> > my goals are to find treatment and advice on how to help my

children

> while

> > hopefully helping other families across the state...

> >

> Welcome, .

> Look forward to dialogue with you!

> Ellen

>

>

>

>

>

>

>

> Links

>

>

>

>

>

>

>

>

>

>

>

>

>

> I actively watch the Autism News and several other autism

listserves in

> Illinois and Nationally...if something comes across them that is

appropriate to

> this list I will ccertainly forward it!

>

>

>Thanks, !

Ellen

[Guest guest]

Hi ,

Glad you're with us.

Marie

> >

> > A quick introduction tho I think you might know me already...

> >

> > L.

> > Grayslake, Father to Evan (13/Autism) and Dylan(11/PDD) Wife

> Suzanne

> > (compulsive shopper lol)

> > Current President-Autism Society of Illinois...

> > my goals are to find treatment and advice on how to help my

children

> while

> > hopefully helping other families across the state...

> >

> Welcome, .

> Look forward to dialogue with you!

> Ellen

>

>

>

>

>

>

>

> Links

>

>

>

>

>

>

>

>

>

>

>

>

>

> I actively watch the Autism News and several other autism

listserves in

> Illinois and Nationally...if something comes across them that is

appropriate to

> this list I will ccertainly forward it!

>

>

>

[Guest guest]

...SO happy to have you join the group!

Ellen

Ellen Garber Bronfeldegskb@...

Introduction

Marie, Thank you for the invitation to join this group.I quickly noticed many friends :-)My name is Kanter, I am the proud single parent to . recently turned 18 years old. He is deaf / autistic and attending a public school named "Park School" in ton. We live in Wheeling, Illinois and has taken a taxi to and from school since he was three years old.I am the immediate past president of the North Suburban Autism Chapter of IL / ASA and I am currently the Vice President to the Autism Society of Illinois. I look forward to exchanging information with all of you!

[Guest guest]

Happy you're with us too, Mike! It's a whole different ballgame and

we're in this together. So, 007, are you shaken or stirred???????

(My attempt at humor---we're allowed to be funny, or try to be

funny, here!)

Marie

>

> ...SO happy to have you join the group!

> Ellen

>

> Ellen Garber Bronfeld

> egskb@...

> Introduction

>

>

> Marie, Thank you for the invitation to join this group.

> I quickly noticed many friends :-)

> My name is Kanter, I am the proud single parent to

.

> recently turned 18 years old. He is deaf / autistic and

> attending a public school named " Park School " in ton. We

live in

> Wheeling, Illinois and has taken a taxi to and from

school

> since he was three years old.

> I am the immediate past president of the North Suburban Autism

Chapter

> of IL / ASA and I am currently the Vice President to the Autism

Society

> of Illinois. I look forward to exchanging information with all

of you!

>

>

[Guest guest]

Nice to meet you Harry! If we lived closer to you, I'd take you up on your offer.

...Check out our website: Angel Speaks