Roll call

[Guest guest]

You found out from the endoscopy that you had back in early August that you have GERD?

Support your friendly local autistics...........I'm one of them.

Roll Call

from Cincinnati checking in! I've been doing pretty well health wise. I found out from the endoscopy I had back in early August that I have GERD. Because of this, I've modified my diet a little bit. I'm no longer drinking caffeinated coffee except when I first get up. Then I switch to decaf. I also have limited my intake of chocolate & tomatoes. I still burp after meals but not as bad.I've also been dealing with my mom. She's done remarkably well in the 11 months that my Dad has been gone. She was leaning on me pretty heavily last week but this week it's been easier. My sister & her family are in from New York for the week & that has really helped me out mentally! I didn't realize that being a caretaker would be so mentally draining. We'll see how things go though as the date of my Dad's death gets closer.I would like to also request prayers for a co-worker. Her daughter, named Carol, has less than a month to live.

Carol was in remission from Hodgkins disease & apparently the radiation caused her to get the kind of cancer that you get from asbestos. Please pray for the family of Ann Sundal, the mom. Needless to say Ann & her husband are in Nebraska with Carol & her family. That's all I know for now. You all take care. P.Music is a gift from God

[Guest guest]

Oh deliver some of those donuts here please they are YUMMMMMMMMMMY

never mind the 5 kilos baby fat I am trying to loose

Aussie Leis- mum to , Natasha, and Liliana

I am extraordinarily patient, provided I get my own way in the end.

Margaret Thatcher

lie wrote:

> Don delivers Krispy Kreme donuts.

[Guest guest]

-Hello,

We live in Tucson, AZ. I have 3 sons who are 25,21 and 13. is

the youngest with DS. We had a good yr medically. But unfortunately,

Grandpa who lived with us passed on and my Mom died 2 weeks later.

did well with the deaths.

continues to amaze the Drs at how well he is doing despite the

medical rd he has travelled on. In 2003 his fundo ruptured through his

diaphgram and was pushing up into his lungs. In 2007 he had

renal/respiratory failure. Also had a trachio-esophageal fistula that

was undxd since birth, found and surgically repaired. He has gone down

in the University Medical Center annals as the oldest living kiddo who

survived having this and being repaired at age 11.

Unfortunately, before the TEFistula was found and repaired it damaged

his lungs. has chronic lung disease which we keep his lungs

clear on a daily basis with an airway clearance system vest.

We homeschool , but he is involved in 4H, VIP soccer, horseback

riding and taking care of our friend's 5 horses. I love this list for

information!

Janet H

[Guest guest]

I have been having so much fun reading the roll call answers. And I love seeing

so many families respond that are normally lurkers.

My turn....

I am Sharon, wife to Mike for over 20 years, and mom to , 17 with DS, and

, 13 with TS (teenager syndrome). We live in Pawleys Island, SC, which is

on the coast of SC, about 25 miles south of Myrtle Beach. Mike works for

International Paper (which is why we are here), and I am a RN, who after 25

years of working in ICU settings, have now made the change to school nursing,

and am the nurse at our local elementary school. is in high school,

in middle school. As a rule, we have very good schools, if you aren't in need

of special education services that is.

is such an awesome person. She loves music, especially country music, and

she recently got to see Dolly Parton in concert, which she loved. She also

loves High School Musical (all of them), Hairspray, Mamma Mia. loves to

read, and dance, and she has been taking dance for about 11 years. She also

loves to swim, and go to the beach. She is overall an easygoing person, has her

moments, but we all do. We are from Mobile, AL, and every summer she returns to

attend Camp SMILE, run by the UCP office in Mobile.

Health wise we have been lucky. had a TEF (tracheal esophageal fistula)

when she was born, and that was repaired the day after she was born. Very few

ear infections. Lots of sinus infections. One bout of pneumonia. Tonsils out

at 20 months.

is a very bright 13 year old who, at this time, has decided " school just

isn't important " . She also loves music, is in the chorus at school, active in

her youth group.

Mike works long hours, and he loves to fish. We all love college football, are

huge Auburn University fans. I now have a job with pretty much dream hours. I

love reading, music, and have recently begun scrapbooking, and am loving it.

Well, I think that covers us in a nutshell. Can't wait to read more updates!

Sharon H.

Mom to , (17, DS) and , (13)

South Carolina

www.gsdss.net

" Be kinder than necessary, for everyone you meet is fighting some kind of

battle. "

" Life is too short for drama & petty things, so kiss slowly, laugh insanely,

love truly and forgive quickly. "

[Guest guest]

I live in Idaho with my husband and three kids. I have two girls ages 13 and 9

and a son 3 with ds. I think I have only posted once but I often lurk. Our son

is in his first year of preschool and he loves it. I think the bus might be one

of his favorite parts.

We did not know that our son had ds until birth. He had a hole that closed up

the first week. He was my largest child weighing in at over 8 lbs. We deal with

glasses for crossed eyes which seems to be a daily struggle. He had seizures for

a while but has been seizure free for about 2 years. At least he has not had any

that we have noticed. He was also born with a clubbed foot which has been

corrected thorugh orthotics. He learned to walk right around his 3rd birthday

and we are thrilled. However I am now spending my time chasing him but I would

not trade it for anything. He only says a few words like mama and dada, well

more like dadadadada and has learned how to shake his head no. He knows a few

signs but seems to think that those few should cover it all. Oh well, hopefully

with time his language with expand.

We have lots of support from family and friends and we feel we have been truly

blessed with out little boy as well as with our girls. Hopefully sometime I will

start posting instead of just lurking around. --

[Guest guest]

Hi All,

I am probably one of the original members, but I just lurk. Colin, my son

with DS is now 16. He is a sophomore in high school. We live outside of

Milwaukee now.

Colin is amazing, caring, intelligent, funny, oh-my-God funny, if his speech

was better he could do stand up. His interest has always been in

electronics and computers. He loves games...all forms electronic. Colin

also has some auto-immune disorders....alopecia universala (since 18 mo),

hypo-thyroid.

I am getting more and more disappointed with high school. It seems more

like a babysitting. Just before Winter Break he actually had a worksheet

that had questions like....Rudolph is a (A) reindeer, ( dog, © goat.

I'd move in a heartbeat for a great high school program..anyone know of one?

Maybe someplace with less than 3 feet of snow in December? (tee he)

Florida sounds good.

Thank you all for being there

[Guest guest]

HI, I " m Jen from northeast Ohio and I have 3 kids, on 7 yrs., Tate 4

yrs. (ds) and Teagan 2yrs and have been married to Dan for 15 years. Tate is in

the county MRDD program and is doing fabulous! He isn't talking much but

doing so much better. He gets to ride the bus 4 days a week, which is a

highlight for him. Last year was a challenging for him and us. He was in

public

preschool and private preschool. Private preschool tried their best to help

Tate

be successful, public school was a different matter. I'm just glad he's out

of there and he's where he should be. Anyway, on is very patient (mostly)

with his little brother and is helpful. Teagan, the little sister looks and

acts like Tate's twin, which can make for some interesting times around our

house. It's crazy, but we're blessed. -Jen

**************

Stay up-to-date on

the latest news - from fashion trends to celebrity break-ups and everything in

between. (http://www.aol.com/?ncid=emlcntaolcom00000024)

[Guest guest]

Greetings from Hawaii-

 I'm Jocelyn and my husband Tim and our two beautiful daughters live in Hawaii

on the island of Oahu.  Maren is 3 1/2 and Sidney is 15 months old. We all enjoy

the sun, sand and water and will truly miss this place when our time here is up.

 Maren (DS)is stupendous (her words) in so many ways. She continues to surprise

us daily - she just started singing!!! We call her our book worm because her

favorite thing to do (besides going to the beach) is reading books.  She attends

a weekly dance class and loves to show everyone her " moves " .  We love to see how

she impacts everyone around her.

Sidney keeps us busy.  She is an explorer and a big ham.  The sun rises and sets

for her with her older sister and she loves to wake up and give Maren a hug.  We

enjoy her more each day as her little personality continues to emerge.

Thank you for the opportunity to be a part of this supportive group.  I have

gained a lot of knowledge from all the messages and it's always nice to know

there are others who have ups and downs similiar to ours.

Aloha,

Jocelyn

[Guest guest]

Karrie's newest reason for getting into trouble at school.... " My teacher hates

me " . Oh, the drama!!

Sue mom to Kate 19 and Karrie 12 w/ds and mild autism

---- Sue <mom2alyssa3@...> wrote:

> Debbie,

> You just described my Alyssa. She is very sensitive, tells everything like it

is, she does lie-like coming home & I say how was  your day? She'll reply

" Great " only for me to look in her book to see it wasn't so great. Then she's

saying, " Don't look in my book. " as she knows I'll find the truth. She'll get

very upset and tell me she's sorry, " she was nervous " (her new favorite excuse)

and tell me, " I promise to behave. "   She may tell me she didn't do

something, but again, like you, ask her more than a couple times and the truth

comes falling out. I have never heard her say she didn't like someone. And she

will tell you proudly how she " loves " (a boy who has befriended her at

school, walking with her when no one else will, or sitting with her at

lunch.) She does not want to hurt anyone. And if I'm upset, she sits by me,

holds me and tells me " it'll be alright, I'm right here. " She has never been one

to ask for much of anything, where my

> granddaughter is never happy with what she got and focuses on what she didn't

get. Alyssa is just a different kind of kid. And I love her! Sue & Alyssa

> P.S. I did post some new pic of her if anyone's interested.

>

>

>

>

>

[Guest guest]

Sorry - I hit the send button rather than the save button before I was

finished.

's brother, sister-in-law and niece moved out a few months ago. As

much as I miss the baby I am thrilled to have just the three of us in

the house again (well, along with the dog). It was costing me a fortune

having them here so even tho I feel terrible for being glad - it is so

much less expensive and stressful now.

I have been contracting with a company for 4.5 years now and they are

finally hiring me as a full time employee. I am so excited about it -

plus I get a raise. Dad is still with the same company for many 20+

years and FINALLY was moved to days (from 20 years of midnight) he is

thrilled and it is kinda nice to have a somewhat normal homelife for the

first time in our married life. All in all we are at a really good

place right now. I am hoping it continues.

I did want to mention about the toileting issue. was 6 or 8 before

he was totally day trained and I think more than 13 before he was

consistently successful at night. I did everything!!!! I set an alarm

at 1am each night, woke him to use the bathroom for a whole year - no

success. I took the pull ups away at 8years old and did sheets for a

year every day. Before I gave up and went back to the pull-ups. I used

to have poop dreams and smell pee everywhere. I'm not kidding - it was

starting to drive me a bit crazy. I was obsessed about it for 13 years!

I tried doctors, meds, you name it.

As with everything with my guy - he did it when he was ready - not

before. No amount of bribery, anger, threats, anything will make him do

something before he is ready.

I don't think he is the highest functioning on this list as he just

doesn't seem to understand things no matter how I try - but he is a

great person. Keeps me on my toes and loves me unconditionally - even

when I am having a bad day. I couldn't ask for more.

We are in northern New Jersey and are mighty sick of all this snow.

Enough already!!

So wonderful to hear from you all again - my family is back )

Dawn

Roll call

So nice to hear from everyone! I was just thinking how I was missing all

of you. I just don't think facebook gives the same detail and connection

this forum allows.

I am Dawn mom to who is 17 now and in our local high school much to

my dismay. I really didn't want him in this school system as he was in a

private school for about 10 years which I loved. I don't understand why

the private school was so ready to work with us no matter what. I was

always comfortable with his safety, learning, social, friends, etc. Why

does public school have to make EVERYTHING so friggin difficult? Anyway

is doing better this year and has started job sampling. This means

he works Tues and Thurs from 10am-2pm for $7.50/hr for 3 months and then

moves on to the next job. It is hoped this will help him decide what he

really wants to do. His first job was at the Shop-Rite near home in the

bakery. The people really seemed to like him although his job coach was

a bit frustrated w/him at times. Now he is at the Marriott and from what

he tells me he folds towels and sheets. I haven't gotten a report from

the coach yet to know for sure. A bus picks him up at school, takes him

to work, picks him up and brings him home.

We have applied for vo-tech for next year because even tho the work is

good the class is not up to par. Hopefully he will get chosen.

s

Sent from my Verizon Wireless BlackBerry

-----

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[Guest guest]

Val Surbey here. I live in Winnipeg, Manitoba, Canada with my sons Tim (20 and

has Down syndrome) and (has FASD, is 20 and in university). Our son

died in 2005 and our youngest Preston moved into supported living.

They are all adopted. My husband, Vince is now in a care facility called Deer

Lodge. Four years ago he had a massive bi-lateral brain stem stroke which left

him totally unable to use any part of his body except his head. He is unable to

speak, has a trach, is tube fed, and is totally cognizant of everything around

him and everyone. He’s a retired phys ed teacher and this hit him really hard.

Tim is in his last year of school. He turns 21 in April. We are looking at a

program where he may be able to do some supported employment. He really likes

photography and does a great job at it. One of his pictures was chosen for a

calendar promoting the RDSP (Registered Disability Savings Plan) which has been

circulated nationally.

Our Down syndrome society started a group called LIvewires and Tim attends that

with his friends about every other week. They were bowling last night and he

actually won.

Our older children (biological children) are grown and have their own families.

The closest is our daughter who lives about 1/2 hour from us, has three boys,

10, and twins who are 7. One twin has a diagnosis of Autism.

I work in the school division on the school bus. I don’t drive, but serve as

a paraprofessional...I have children on my bus with a variety of disabilities

and needs. We transport children who are in wheelchairs, children who are

visually impaired, have seizure disorders, and other disabilities. Tim rides my

bus with me as well.

Val

________________________________

From: Gem Bordages <mailto:gem.bordages%40gmail.com>

UpsAndDowns <mailto:%40>

Sent: Sun, January 30, 2011 9:02:16 AM

Subject: Roll call

Granny here. Mother to Brick 57, who teaches high school remedial math,

44, who manages a retail store, 39, musician and househusband,

and 37 DS, who attends a sheltered workshop three days a week.

Grandmother to seven, and great-grandmother to two. was a special ed

student. She reads, writes, does her own banking and pays her own bills. Now

that I'm old and feeble, she helps me cook, bathe, dress and runs a lot of

errands. I have a home-health aide on the days is at Sunshine Center

with her lifelong friends.

We live on Galveston Island about 45 miles south of Houston.

granny

--

*Not for ourselves, but for the world were we born.*

[Guest guest]

bit of a lurker these days but have been a member of the list since my son tim

was 2 years old, he is now a strapping 17 year old, i feel so old!!

tim was adopted from hong kong when i lived there some years ago. he attends a

special needs 6th form in Hull (We live in the north east of the UK) where he is

thriving. he went to a mainstream primary school but moved to a special school

aged 11 and has come on in leaps and bounds. he is somewhat shy, just coming

out the other side of puberty all hair and hormones! tim also has some medical

problems which have required a lot of surgery over the years but are more or

less stable at the moment. he attends a mainstream drama group in the village

and has taken part in 6 theatrical productions with them so far which he

thoroughly enjoys and has been a really good experience not just for him but for

the young people in our local community as well. he walks by himself to get

there, a skill he is very proud of.

i am a foster carer now, have been many other things but fostering is my first

love. i am approved for two babies 0-2 years old and currently have small bubs

(15 months) who has some developmental and health issues and tiddly bubs (4

weeks) who so far has no obvious problems (beyond her family circumstances). i

have two older children, ben, who lives and works in manchester and naomi who is

currently studying theater in london.

sue w

[Guest guest]

Sue we have bee around along time together. My daughter is 17 and we have been

on this list since she was hgosh maybe 3 or 4

Kathy

Sent from my Verizon Wireless BlackBerry

Re: Roll call

bit of a lurker these days but have been a member of the list since my son tim

was 2 years old, he is now a strapping 17 year old, i feel so old!!

tim was adopted from hong kong when i lived there some years ago. he attends a

special needs 6th form in Hull (We live in the north east of the UK) where he is

thriving. he went to a mainstream primary school but moved to a special school

aged 11 and has come on in leaps and bounds. he is somewhat shy, just coming

out the other side of puberty all hair and hormones! tim also has some medical

problems which have required a lot of surgery over the years but are more or

less stable at the moment. he attends a mainstream drama group in the village

and has taken part in 6 theatrical productions with them so far which he

thoroughly enjoys and has been a really good experience not just for him but for

the young people in our local community as well. he walks by himself to get

there, a skill he is very proud of.

i am a foster carer now, have been many other things but fostering is my first

love. i am approved for two babies 0-2 years old and currently have small bubs

(15 months) who has some developmental and health issues and tiddly bubs (4

weeks) who so far has no obvious problems (beyond her family circumstances). i

have two older children, ben, who lives and works in manchester and naomi who is

currently studying theater in london.

sue w

[Guest guest]

Hi, I am Debbie. I live near Cleveland Ohio, my husband and i have 6

children 19, 16, Tim 11, 8, Josh 5 and Luke (DS) is 5

months. Luke is such a blessing to our family and we all simply adore him!

I cant imagine life without him. I am excited for his future, it sounds

like there are so many opportunities for him. We are taking it one day at a

time.

deb

[Guest guest]

You are right about that Dawn - I do love being able to look at the pictures on

Facebook, but there is just not the connectedness we can feel for others that

you can find with in the group!

 

Nice to hear from you,

Patty

From: Dawn <dawnjohn90@...>

Subject: Roll call

Date: Sunday, January 30, 2011, 7:40 PM

 

So nice to hear from everyone! I was just thinking how I was missing all of you.

I just don't think facebook gives the same detail and connection this forum

allows.

I am Dawn mom to who is 17 now and in our local high school much to my

dismay. I really didn't want him in this school system as he was in a private

school for about 10 years which I loved. I don't understand why the private

school was so ready to work with us no matter what. I was always comfortable

with his safety, learning, social, friends, etc. Why does public school have to

make EVERYTHING so friggin difficult? Anyway is doing better this year and

has started job sampling. This means he works Tues and Thurs from 10am-2pm for

$7.50/hr for 3 months and then moves on to the next job. It is hoped this will

help him decide what he really wants to do. His first job was at the Shop-Rite

near home in the bakery. The people really seemed to like him although his job

coach was a bit frustrated w/him at times. Now he is at the Marriott and from

what he tells me he folds towels and sheets. I haven't gotten a report from the

coach yet to know for sure.

A bus picks him up at school, takes him to work, picks him up and brings him

home.

We have applied for vo-tech for next year because even tho the work is good the

class is not up to par. Hopefully he will get chosen.

s

Sent from my Verizon Wireless BlackBerry

[Guest guest]

I totally agree!  FB is not a place I will feel comfortable for sharing or

asking things that I know only you guys will understand, so " chapeau " to

for keeping Ups N Downs active!

I am Ana .   Bonnie to all of you, mother of three:  Jean-Pierre (22);

Mark (20) and Ana (18 w/ds) and wife to Berton.

We live in a small city in the Western part of Belgium, not too far from

Brussels, where Flemish (Dutch) is spoken.  Ana goes to a special education

school and follows a life skill program. 

I like to read all the messages and learn from your experiences, you are really

a good source of great ideas and inspiration. The only thing I regret is that I

did not know about you before, when Ana was younger.

Nice to hear from all of you,

Bonnie

--- El lun 31-ene-11, Patty Derdzinski <pderdzinski@...> escribió:

De: Patty Derdzinski <pderdzinski@...>

Asunto: Re: Roll call

A: , dawnjohn90@...

Fecha: lunes, 31 de enero de 2011, 20:49

 

You are right about that Dawn - I do love being able to look at the

pictures on Facebook, but there is just not the connectedness we can feel for

others that you can find with in the group!

 

Nice to hear from you,

Patty

From: Dawn <dawnjohn90@...>

Subject: Roll call

Date: Sunday, January 30, 2011, 7:40 PM

 

So nice to hear from everyone! I was just thinking how I was missing all of you.

I just don't think facebook gives the same detail and connection this forum

allows.

I am Dawn mom to who is 17 now and in our local high school much to my

dismay. I really didn't want him in this school system as he was in a private

school for about 10 years which I loved. I don't understand why the private

school was so ready to work with us no matter what. I was always comfortable

with his safety, learning, social, friends, etc. Why does public school have to

make EVERYTHING so friggin difficult? Anyway is doing better this year and

has started job sampling. This means he works Tues and Thurs from 10am-2pm for

$7.50/hr for 3 months and then moves on to the next job. It is hoped this will

help him decide what he really wants to do. His first job was at the Shop-Rite

near home in the bakery. The people really seemed to like him although his job

coach was a bit frustrated w/him at times. Now he is at the Marriott and from

what he tells me he folds towels and sheets. I haven't gotten a report from the

coach yet to know for sure.

A bus picks him up at school, takes him to work, picks him up and brings him

home.

We have applied for vo-tech for next year because even tho the work is good the

class is not up to par. Hopefully he will get chosen.

s

Sent from my Verizon Wireless BlackBerry

[Guest guest]

Hi,

I'm Diane member since 1998. aka Nic, is my 13 year old (soon to be

14) with DS. I lhave a 28 year old as well, Jake.

I am married to Bob and we live just outside Philadelphia.

Nic is in a full time learning support program at school. I am very pleased with

our district (but wasn't always the case).

He is involved in 2 after school clubs (with an aide that they provide).

Builder's Club which is actually a community service club-nothing to do with

building...and World Language club where they learn about other cultures.

Nic is also in Special Olympics powerlifting and gymnastics and in the spring

the district sends all elegible athletes to the track and field meet.

[Guest guest]

True, True! Dawn, laugh if you want to, but every time I see that 7 layer

Mexican dish, I think of you. You made it one year at the soiree. I'm glad

you are back online

Roll call

Date: Sunday, January 30, 2011, 7:40 PM

So nice to hear from everyone! I was just thinking how I was missing all of

you. I just don't think facebook gives the same detail and connection this

forum allows.

I am Dawn mom to who is 17 now and in our local high school much to my

dismay. I really didn't want him in this school system as he was in a

private school for about 10 years which I loved. I don't understand why the

private school was so ready to work with us no matter what. I was always

comfortable with his safety, learning, social, friends, etc. Why does public

school have to make EVERYTHING so friggin difficult? Anyway is doing

better this year and has started job sampling. This means he works Tues and

Thurs from 10am-2pm for $7.50/hr for 3 months and then moves on to the next

job. It is hoped this will help him decide what he really wants to do. His

first job was at the Shop-Rite near home in the bakery. The people really

seemed to like him although his job coach was a bit frustrated w/him at

times. Now he is at the Marriott and from what he tells me he folds towels

and sheets. I haven't gotten a report from the coach yet to know for sure.

A bus picks him up at school, takes him to work, picks him up and brings

him home.

We have applied for vo-tech for next year because even tho the work is good

the class is not up to par. Hopefully he will get chosen.

s

Sent from my Verizon Wireless BlackBerry

[Guest guest]

Okay... I have just spent the last half hour cruising through the files in

the group, looking for some shred of information that would tell me how long

I have been a part of this group ~ and I have no idea.

I am Kathy, 's mom, in the Central Valley of California.

(http://waycool.net/sarah) is now 26 years old, attends a day program, works

part-time two days a week as a housekeeper at UCP, volunteers on Saturdays

(for the last 7-8 years) at the local thrift store that's a fundraiser for

the Homeless Shelter, runs a small business on the side

(http://sarah-works.com) and has just this last week broken up with a

boyfriend in the middle of Winter Formal and picked up yet another boyfriend

during the same dance. Serial Monogamist, she is. She is also attempting to

teach herself guitar ~ her music teacher is in a band, and she has talked

one of the band members into being her backup once she learns.

I have three other kids - well, adults.

Amber (Keratoconus) is 35 now, has one son (Jade) who is 14. She and I run

a small business at Renaissance Faires and the like

(http://theamberwolf.com)

Meryl (AVM, brain surgery at age 12) is 28, and has 4 (FOUR) kids -

Christian (5), Aiden (4), Kaitlyn (2) and Collin- (1).

(Hard of Hearing due to Meningitis as an infant) is nearly 23.

Both and still live at home here, and it's working out well so

far. (Wait.... is that an arguement I hear in the background?)

was mainstreamed throughout her public education, and some years were

way more successful than others. She was the first child with Down syndrome

at our local school, and as far as I know, the last. Seems to not be a

practice that is encouraged.

Since High School she attended a transition class, then started at the Alan

Short Center (which focuses on the arts and music). The Alan Short Center

hosted the Winter Formal last week - first annual event, here's some press

on it:

http://centralstockton.news10.net/content/adults-developmental-disabilities-

stockton-enjoy-unique-prom-hosted-alan-short-center-0?utm_source=fcbkiconbig

I retired this last year from state employment in the IT field... and the

spouse in my house is nearly disability-retired from his self-employment as

an archaeologist.

Oh - and for those that are friends on facebook - I Blame . ( is

my daughter's boyfriend).(http://facebook.com/I.Blame.)

(http://iblamescott.com)

Okay ~ thanks for reading this far!

--

Kathy Werner

[Guest guest]

Hi!

I am Jody and have been a member for approx one year. We are located in Grand

Forks, ND. I am not on Facebook so sure miss posts here I am usually just a

reader and don't do a ton of responding as my kiddos are 3 and 4 and we are in

the middle of renovating a 100 year old home. Sam(ds) turned three in December

and just last month transitioned into the special needs preschool. Sophie is

four and is attending preschool two days a week. We will be moving(just in town)

May/June and I can't wait for things to settle down a bit. I really enjoy being

part of this group and value the information so many of you provide.

Jody

________________________________

From: Sharon <shughes813@...>

< >

Sent: Mon, January 31, 2011 9:53:32 PM

Subject: Roll Call

 

Hi everyone!

Reading all the roll call responses has been a lot of fun. Facebook is fun,

but I miss the activity of the , and there definitely are some

issues that I won't discuss in that forum.

I am Sharon, Mom to , 19 with DS, and , 15. We live in Pawleys

Island, South Carolina, which is a small community about 25 miles south of

Myrtle Beach, or about an hour north of ton.

is a junior in high school. This year she is spending the mornings

in a career lab, and a culinary arts class, at another high school in our

district. In the afternoons she is back at her home school for academics

and other activities. Our district is small, and can't offer all courses at

all schools. She loves getting out and going to the different school and

meeting other people. It is very difficult working with our district.

There are very few students with DS in the district, no one 's age, and

I have felt many times that they just didn't know what to do with her.

(They actually told me that one time, " we have never had a student like

, and we aren't sure what to do with her " ). She doesn't fit their

mold of what a DS student is. I purchased an educational program at the

NDSC convention for my use with her at home, and I have ended up letting the

school use it because otherwise her academics were just a hodge podge of

stuff, and it seemed that no one could get it together. Being at the other

school in the mornings is good, because the rest of the sped class does

their field trips in the morning, where they visit stores to learn how to

shop, restaurants to learn how to order from menus and eat/behave in

public. These are skills that mastered a long time ago, and the we

reinforce at home.

is also the manager of the girls varsity basketball team. She loves

that, she will tell you in an instant that basketball is her favorite

sport. She gets along well with the girls, and knows the coach well. The

coach was her middle school teacher, and is very good at inclusion

practices. When not at school loves movies, music, and reading. We

recently got a golf cart, and are going to teach her to drive it. We are

hoping she will attend the LIFE program at Coastal Carolina University in a

couple of years.

, our 15 year old, is a sophomore, and got her learner's permit in

October. She is doing great at driving. She otherwise is going through a

rough time right now with school, and other things, and is just generally

having a rough go of it right now. She, and Mike and I, can use all the

good thoughts and prayers you can send our way.

Mike continues to work for International Paper, he has been with them 31

years. He hopes to retire in a few years. I am a RN, now working at our

local elementary school, taking care of 725 students in Pre-K-3rd grade.

After years in ICU, I needed a change, and this has been a good one. I like

to read, scrapbook, and like , LOVE the beach, and am grateful we are 5

minutes from the beach.

Think I have given you enough to read, if you made it to the end, Thanks!

Sharon

[Guest guest]

Eleanor Green here. My girl, , is a veteran of 7 hospitals, 4 surgeries (2

gigantic heart ones, 2 gastro ones), we nearly lost her, and are so very

grateful she is still with us and doing really well. She is the sun coming up

everyday.

I first heard of this group when my daughter was a baby - 15ish years ago. Tim

and were featured in an article in the Richmond, VA, paper, which my old

college roommate cut out and mailed to me. I was soooo excited!!!!!

I lurk more than anything. Get on when I need IEP help. Have been through the

horrors of a school system not wanting to include my kid, so we had to get a

lawyer and file for (and win!) a due process. I don't recommend it as anything

but a last ditch effort, btw. It was pure h***, but the upside of it is our

daughter has had really good school years pretty much ever since, except

for some rough patches through middle school, more due to their not

understanding kids with ds, developmentally, than anything else. If I can offer

you young parents any advice it's to be very clear your #1 job (after just

loving to death your special kid) is to advocate, advocate, advocate. You know

your child best. If you want your child included in reg ed, then they need

to/are required to do it. It's a win/win, imho.

God be with you all,

Eleanor

RE: Roll Call

 

Okay... I have just spent the last half hour cruising through the files in

the group, looking for some shred of information that would tell me how long

I have been a part of this group ~ and I have no idea.

I am Kathy, 's mom, in the Central Valley of California.

( http://waycool.net/sarah ) is now 26 years old, attends a day program, works

part-time two days a week as a housekeeper at UCP, volunteers on Saturdays

(for the last 7-8 years) at the local thrift store that's a fundraiser for

the Homeless Shelter, runs a small business on the side

( http://sarah-works.com ) and has just this last week broken up with a

boyfriend in the middle of Winter Formal and picked up yet another boyfriend

during the same dance. Serial Monogamist, she is. She is also attempting to

teach herself guitar ~ her music teacher is in a band, and she has talked

one of the band members into being her backup once she learns.

I have three other kids - well, adults.

Amber (Keratoconus) is 35 now, has one son (Jade) who is 14. She and I run

a small business at Renaissance Faires and the like

( http://theamberwolf.com )

Meryl (AVM, brain surgery at age 12) is 28, and has 4 (FOUR) kids -

Christian (5), Aiden (4), Kaitlyn (2) and Collin- (1).

(Hard of Hearing due to Meningitis as an infant) is nearly 23.

Both and still live at home here, and it's working out well so

far. (Wait.... is that an arguement I hear in the background?)

was mainstreamed throughout her public education, and some years were

way more successful than others. She was the first child with Down syndrome

at our local school, and as far as I know, the last. Seems to not be a

practice that is encouraged.

Since High School she attended a transition class, then started at the Alan

Short Center (which focuses on the arts and music). The Alan Short Center

hosted the Winter Formal last week - first annual event, here's some press

on it:

http://centralstockton.news10.net/content/adults-developmental-disabilities-

stockton-enjoy-unique-prom-hosted-alan-short-center-0?utm_source=fcbkiconbig

I retired this last year from state employment in the IT field... and the

spouse in my house is nearly disability-retired from his self-employment as

an archaeologist.

Oh - and for those that are friends on facebook - I Blame . ( is

my daughter's boyfriend).( http://facebook.com/I.Blame. )

( http://iblamescott.com )

Okay ~ thanks for reading this far!

--

Kathy Werner

[Guest guest]

I'm here.

Kym in Arizona. My husband and I have 5 children. Our two oldest are out

of the house and married. One of them just gave us our first grand child

last year We have 3 left at home. is 16, (w/DS) is 13 and

is 6.

Life is never dull over here!

[Guest guest]

We are the Hill family in AZ. I have 3 sons. Oldest two are in mid 20's. So

age 15 is now an " only " . We have had many health challenges...good thing

is this past yr we seem to be overcoming some of them. As a result his learning

academics and lifeskills have taken on a good learning curve. We homeschool as

it is the least restrictive environment medically for him.I don't contribute to

posts much; but read everyone. Thanks for the list.

Janet

[Guest guest]

Sharon.. can you please share what the educational program was that you bought?

Always looking for new ways to educate the kids!

[Guest guest]

Testing, sent roll call message earlier this morning. Still haven't seen it come

through.

Roll Call

Hi everyone!

Reading all the roll call responses has been a lot of fun. Facebook is fun,

but I miss the activity of the , and there definitely are some

issues that I won't discuss in that forum.

I am Sharon, Mom to , 19 with DS, and , 15. We live in Pawleys

Island, South Carolina, which is a small community about 25 miles south of

Myrtle Beach, or about an hour north of ton.

is a junior in high school. This year she is spending the mornings

in a career lab, and a culinary arts class, at another high school in our

district. In the afternoons she is back at her home school for academics

and other activities. Our district is small, and can't offer all courses at

all schools. She loves getting out and going to the different school and

meeting other people. It is very difficult working with our district.

There are very few students with DS in the district, no one 's age, and

I have felt many times that they just didn't know what to do with her.

(They actually told me that one time, " we have never had a student like

, and we aren't sure what to do with her " ). She doesn't fit their

mold of what a DS student is. I purchased an educational program at the

NDSC convention for my use with her at home, and I have ended up letting the

school use it because otherwise her academics were just a hodge podge of

stuff, and it seemed that no one could get it together. Being at the other

school in the mornings is good, because the rest of the sped class does

their field trips in the morning, where they visit stores to learn how to

shop, restaurants to learn how to order from menus and eat/behave in

public. These are skills that mastered a long time ago, and the we

reinforce at home.

is also the manager of the girls varsity basketball team. She loves

that, she will tell you in an instant that basketball is her favorite

sport. She gets along well with the girls, and knows the coach well. The

coach was her middle school teacher, and is very good at inclusion

practices. When not at school loves movies, music, and reading. We

recently got a golf cart, and are going to teach her to drive it. We are

hoping she will attend the LIFE program at Coastal Carolina University in a

couple of years.

, our 15 year old, is a sophomore, and got her learner's permit in

October. She is doing great at driving. She otherwise is going through a

rough time right now with school, and other things, and is just generally

having a rough go of it right now. She, and Mike and I, can use all the

good thoughts and prayers you can send our way.

Mike continues to work for International Paper, he has been with them 31

years. He hopes to retire in a few years. I am a RN, now working at our

local elementary school, taking care of 725 students in Pre-K-3rd grade.

After years in ICU, I needed a change, and this has been a good one. I like

to read, scrapbook, and like , LOVE the beach, and am grateful we are 5

minutes from the beach.

Think I have given you enough to read, if you made it to the end, Thanks!

Sharon