Introductions

[Guest guest]

Hello CINDY,

Thursday, December 30, 2004, 9:12:28 AM, you wrote:

> Ken and we have a dog named Scout

Who names their dog ?

--

Best regards,

Tim mailto:tcasten@...

[Guest guest]

I'm Di (Diane) from Pennsylvania (just outside Philly). Bob is my husband. We

have a son, Jake (22) and a son, (7.5) who also has DS.

Nic was born with a complete AV Canal defect, a second ASVD, a common valve and

PDA - all corrected at 11 weeks old. At 2 he was diagnosed with Myoclonic

seizures, was on Depekote for 2 years, weaned off and we haven't seen any since.

He is deaf in his left ear and has minimal loss in his right ear. He has had his

tonsils and adenoids removed several years ago (I forget when, lol) He was just

diagnosed with ADHD this past summer. He is in a reg 1st grade with part time

learning support. We just switched his meds from Dexedrine to Straterra (on

Christmas Day). It will take a few weeks to see any effects. This has been a

LOOOOONG week so far. He lost 10 pounds on the Dex so that's mainly why we

changed, We decided to see a psychiatrist instead of having his regular DO

treating the ADHD. He just wasn't very knowledgeable about ADHD meds.

Di

Introductions

Since things have been quiet, let's do introductions again. For those who

haven't been here when it's been done, you can introduce your whole family

with a blurb about each one. You can also give your location - and please

include your child with DS's medical issues - others may be lurking and

prefer private emailing.

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.823 / Virus Database: 561 - Release Date: 12/27/2004

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

[Guest guest]

I'm Di (Diane) from Pennsylvania (just outside Philly). Bob is my husband. We

have a son, Jake (22) and a son, (7.5) who also has DS.

Nic was born with a complete AV Canal defect, a second ASVD, a common valve and

PDA - all corrected at 11 weeks old. At 2 he was diagnosed with Myoclonic

seizures, was on Depekote for 2 years, weaned off and we haven't seen any since.

He is deaf in his left ear and has minimal loss in his right ear. He has had his

tonsils and adenoids removed several years ago (I forget when, lol) He was just

diagnosed with ADHD this past summer. He is in a reg 1st grade with part time

learning support. We just switched his meds from Dexedrine to Straterra (on

Christmas Day). It will take a few weeks to see any effects. This has been a

LOOOOONG week so far. He lost 10 pounds on the Dex so that's mainly why we

changed, We decided to see a psychiatrist instead of having his regular DO

treating the ADHD. He just wasn't very knowledgeable about ADHD meds.

Di

Introductions

Since things have been quiet, let's do introductions again. For those who

haven't been here when it's been done, you can introduce your whole family

with a blurb about each one. You can also give your location - and please

include your child with DS's medical issues - others may be lurking and

prefer private emailing.

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.823 / Virus Database: 561 - Release Date: 12/27/2004

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

[Guest guest]

We are the Briggs/French family in central Illinois (Arenzville to be exact,

pop. 450 counting cows).

We are Jim and Jill and are kids are: (20, who recently moved to

Florida & is doing construction work), Lydia (12, incredibly proper,

intelligent, type A personality) and Isaac (6, DS and very entertaining).

Isaac has no major DS related health issues, just an occasional exzema

outbreak and sniffles. He's VERY active, likes to escape from the home,

likes to get up in the middle of the night and explore the house, etc. And

he's not housebroken yet either.....working on that. But otherwise, he's

great. He goes to our local school and is in regular kindergarten (as our

school doesn't have spec. ed.) and has a full-time 1/1 aide. He is the

first child in the district who has DS and is going to the school. There is

another girl with DS in our community who is 20, but the school conveniently

" farmed " her out to a school 20 miles away. We weren't really interested in

that option. We are having to " push " our school along, but so far they are

doing pretty well with Isaac.

Down syndrome was something we knew nothing about until we had Isaac, but as

we go, we have learned alot, gained many pounds, many gray hairs, learned

how to pull and re-seal a toilet in record time (Isaac is really into

flushing.....anything), and gained a better sense of humor and appreciation

of life.

I don't post often, but I read the posts every evening and have gained

valuable information and insight from all of you.

Re: Introductions

In a message dated 12/30/2004 7:04:52 AM Central Standard Time,

cindysue@... writes:

Since things have been quiet, let's do introductions again. For those who

haven't been here when it's been done, you can introduce your whole family

with a blurb about each one. You can also give your location - and please

include your child with DS's medical issues - others may be lurking and

prefer private emailing.

HI

I am Kathy .... Mom to Joe 26, 25, Kaite 15 and Sara 13 (ds), wife

to Mike, and Grammy to Tater age 4.

We are in the process of moving to Nashville, to be more near my sister and

better services for Sara. Sara is in 6th grade included for all except Math

and Reading. This school year has been going great ...... so great Im kind

of

regretting making the decision to move In all of Sara's educational years

I

am finally able to take a back-seat in it. Her teacher is awesome

.............. almost a " Stepford " teacher lol she looks at Sara with love

and some how

incorporates everything to an IEP objective lol she totally respects where

I

stand and my beliefs and she also doesn't dwell on some of Sara's

challenging behaviors lol she ignores a lot lol

Sara has two best friends, one typical (Halle) and one with DS () she

sees them daily and is very happy. Sara's only unhappiness is because by ME

lol

I am definitely the disciplinary one in this house. Sara's goal in life is

to marry ... then get a job at the Gap lol

Sara has epilepsy and is on medication. Her dangerous scary seizures are

under control right now but I am a bit suspicious that she might be having a

few

different kinds of seizures ........... geeeeeesh there are 40 types of

seizures and medications cannot control all of them. You kind of pick the

ones

you want to target.

Ive been kind of out of it lately with working on the house ..............

I

knew I should have painted years ago lol I have been playing Scarlet and

worrying about things tomorrow lol my sister last week asked me " hey when is

your goal/deadline to moving " I almost had a panic attack lol Im living in

the

now and thinking about the actual move sends me into a tizzy lol I don't

know

if its the actual leaving my adult kids and in-laws or all of the work Ill

have to face after the move lol anyway Im not going to think about this

today

lol

I cant wait to hear all of the intros and from the old timers (like me) the

updates heehee

Kathy mom to Sara 13

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

As for me and my house, we will serve the Lord.

Josh. 24:15

[Guest guest]

We are the Briggs/French family in central Illinois (Arenzville to be exact,

pop. 450 counting cows).

We are Jim and Jill and are kids are: (20, who recently moved to

Florida & is doing construction work), Lydia (12, incredibly proper,

intelligent, type A personality) and Isaac (6, DS and very entertaining).

Isaac has no major DS related health issues, just an occasional exzema

outbreak and sniffles. He's VERY active, likes to escape from the home,

likes to get up in the middle of the night and explore the house, etc. And

he's not housebroken yet either.....working on that. But otherwise, he's

great. He goes to our local school and is in regular kindergarten (as our

school doesn't have spec. ed.) and has a full-time 1/1 aide. He is the

first child in the district who has DS and is going to the school. There is

another girl with DS in our community who is 20, but the school conveniently

" farmed " her out to a school 20 miles away. We weren't really interested in

that option. We are having to " push " our school along, but so far they are

doing pretty well with Isaac.

Down syndrome was something we knew nothing about until we had Isaac, but as

we go, we have learned alot, gained many pounds, many gray hairs, learned

how to pull and re-seal a toilet in record time (Isaac is really into

flushing.....anything), and gained a better sense of humor and appreciation

of life.

I don't post often, but I read the posts every evening and have gained

valuable information and insight from all of you.

Re: Introductions

In a message dated 12/30/2004 7:04:52 AM Central Standard Time,

cindysue@... writes:

Since things have been quiet, let's do introductions again. For those who

haven't been here when it's been done, you can introduce your whole family

with a blurb about each one. You can also give your location - and please

include your child with DS's medical issues - others may be lurking and

prefer private emailing.

HI

I am Kathy .... Mom to Joe 26, 25, Kaite 15 and Sara 13 (ds), wife

to Mike, and Grammy to Tater age 4.

We are in the process of moving to Nashville, to be more near my sister and

better services for Sara. Sara is in 6th grade included for all except Math

and Reading. This school year has been going great ...... so great Im kind

of

regretting making the decision to move In all of Sara's educational years

I

am finally able to take a back-seat in it. Her teacher is awesome

.............. almost a " Stepford " teacher lol she looks at Sara with love

and some how

incorporates everything to an IEP objective lol she totally respects where

I

stand and my beliefs and she also doesn't dwell on some of Sara's

challenging behaviors lol she ignores a lot lol

Sara has two best friends, one typical (Halle) and one with DS () she

sees them daily and is very happy. Sara's only unhappiness is because by ME

lol

I am definitely the disciplinary one in this house. Sara's goal in life is

to marry ... then get a job at the Gap lol

Sara has epilepsy and is on medication. Her dangerous scary seizures are

under control right now but I am a bit suspicious that she might be having a

few

different kinds of seizures ........... geeeeeesh there are 40 types of

seizures and medications cannot control all of them. You kind of pick the

ones

you want to target.

Ive been kind of out of it lately with working on the house ..............

I

knew I should have painted years ago lol I have been playing Scarlet and

worrying about things tomorrow lol my sister last week asked me " hey when is

your goal/deadline to moving " I almost had a panic attack lol Im living in

the

now and thinking about the actual move sends me into a tizzy lol I don't

know

if its the actual leaving my adult kids and in-laws or all of the work Ill

have to face after the move lol anyway Im not going to think about this

today

lol

I cant wait to hear all of the intros and from the old timers (like me) the

updates heehee

Kathy mom to Sara 13

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

As for me and my house, we will serve the Lord.

Josh. 24:15

[Guest guest]

Hi I'm Krystal, married to Steve for 16 years. We live in Colorado and have

Ian 8 (ds) and 6. At the moment we are living with my parents while

waiting for our new home to be built, so it's like one continuous slumber

party - 4 adults, 2 kids, 3 dogs and a cat.

Ian had his tonsils and adenoids removed plus a " throat lift " (tightening of

the skin in his throat) at 3 months, heart surgery to close his pda at 4 or

5 months, 2 surgeries for strabismus correction, a hernia repair/testicle

relocation surgery, and is going in for his second set of tubes. Ian is

nonverbal and was just recently diagnosed with ASD. I thank those of you on

this group who suggested a trip to the Kennedy Krieger Institute and another

listserv group called . You really turned our lives around.

Prior to going to KKI, Ian was not sleeping more than 2 or 3 hours at night,

doing lots of screaming both throughout the night and during the day, was in

danger of being abused by me who was losing my mind due to lack of sleep and

raw nerves, spent non-screaming time either knocking things over or self

stimming and in short, screamed constantly in any car or bus except my car,

was not the child I had had just a year or so before.

The people at KKI helped in two ways: First, they showed me how to correct

his behaviors without escalating the situation. They treated him as a

human, taught me how he thinks, how to respond and did not treat him as a

problem that needed to be medicated into compliance. Secondly, they

addressed the fact that he does have ASD and that some of the things he does

are not behaviors but more compulsions (self stimming, chin slapping). He

is on medications that calm those down but do not turn him into a zombie.

This two pronged approach was the best thing that could have happened for

us. So many people want to say " that's just the way he is, drug him up " or

the exact opposite " he's not been raised/trained/disciplined properly " , so I

vascillated between feeling hopeless/helpless and that I was just a really

bad mother. Sorry if this sounds like a commercial for KKI, I'm sure there

are other resources out there, but I hadn't found any in Colorado and the

trip to Baltimore saved our family.

Anyway, we are a happy family again and have rediscovered Ian. He is

loving, funny, and has a wicked sense of humor. We are coming to grips with

the fact that he won't ever speak and are beginning to work on sign language

(didn't work before because his hands were always busy slapping his chin).

He is pretty much toilet trained, we just need to get him to initiate it

more regularly and we need to gain the courage to throw out the pull ups .

This will probably happen after we move and Ian is comfortable with the new

digs.

Ian is currently in a challenge program in his elementary school and joins

the other third graders for specials. We recently moved him back to this

school which he attended from K - 2, prior to our move from our old home. We

moved just before the beginning of the school year and placed him in a

school close to our temporary home which also had a challenge program.

Unfortunately, their version of a challenge program meant total isolation

and segregation. Tried to work with them but gave up and put him back in

his original school in December. Next year he will be attending a school by

our new home which is in a different county. Their philosophy is to have

the special needs kids 100% integrated with aides, modified curriculum and

pullouts for therapy.

My daughter is a very girly girl and a great blessing. She loves her

brother, never stops talking (talks enough for both kids), can't seem to get

used to her long legs and is constantly tripping, likes our communal living

arrangement and I'll probably have to bribe her with a horrid pink room in

the new house (it's only 5 minutes away from Grammy and Grampy).

My husband Steve is a high school teacher of physics and other geeky things

at Community Christian School. He was an engineer in the hi tech industry

until it crashed a few years ago and really enjoys his new career. I expect

to find him and my dad clinging to each other and crying when we finally

move out...

I am a tax manager for a large multi-state company, which I like and get to

travel alot, which I also like, but at the moment I'm more obsessed with our

new home-to-be - window coverings, patio or deck, and a whole house filled

with new walls to paint! Sublime.

I normally lurk which is a good thing as you can see my propensity to

blather on and on....

[Guest guest]

Hi I'm Krystal, married to Steve for 16 years. We live in Colorado and have

Ian 8 (ds) and 6. At the moment we are living with my parents while

waiting for our new home to be built, so it's like one continuous slumber

party - 4 adults, 2 kids, 3 dogs and a cat.

Ian had his tonsils and adenoids removed plus a " throat lift " (tightening of

the skin in his throat) at 3 months, heart surgery to close his pda at 4 or

5 months, 2 surgeries for strabismus correction, a hernia repair/testicle

relocation surgery, and is going in for his second set of tubes. Ian is

nonverbal and was just recently diagnosed with ASD. I thank those of you on

this group who suggested a trip to the Kennedy Krieger Institute and another

listserv group called . You really turned our lives around.

Prior to going to KKI, Ian was not sleeping more than 2 or 3 hours at night,

doing lots of screaming both throughout the night and during the day, was in

danger of being abused by me who was losing my mind due to lack of sleep and

raw nerves, spent non-screaming time either knocking things over or self

stimming and in short, screamed constantly in any car or bus except my car,

was not the child I had had just a year or so before.

The people at KKI helped in two ways: First, they showed me how to correct

his behaviors without escalating the situation. They treated him as a

human, taught me how he thinks, how to respond and did not treat him as a

problem that needed to be medicated into compliance. Secondly, they

addressed the fact that he does have ASD and that some of the things he does

are not behaviors but more compulsions (self stimming, chin slapping). He

is on medications that calm those down but do not turn him into a zombie.

This two pronged approach was the best thing that could have happened for

us. So many people want to say " that's just the way he is, drug him up " or

the exact opposite " he's not been raised/trained/disciplined properly " , so I

vascillated between feeling hopeless/helpless and that I was just a really

bad mother. Sorry if this sounds like a commercial for KKI, I'm sure there

are other resources out there, but I hadn't found any in Colorado and the

trip to Baltimore saved our family.

Anyway, we are a happy family again and have rediscovered Ian. He is

loving, funny, and has a wicked sense of humor. We are coming to grips with

the fact that he won't ever speak and are beginning to work on sign language

(didn't work before because his hands were always busy slapping his chin).

He is pretty much toilet trained, we just need to get him to initiate it

more regularly and we need to gain the courage to throw out the pull ups .

This will probably happen after we move and Ian is comfortable with the new

digs.

Ian is currently in a challenge program in his elementary school and joins

the other third graders for specials. We recently moved him back to this

school which he attended from K - 2, prior to our move from our old home. We

moved just before the beginning of the school year and placed him in a

school close to our temporary home which also had a challenge program.

Unfortunately, their version of a challenge program meant total isolation

and segregation. Tried to work with them but gave up and put him back in

his original school in December. Next year he will be attending a school by

our new home which is in a different county. Their philosophy is to have

the special needs kids 100% integrated with aides, modified curriculum and

pullouts for therapy.

My daughter is a very girly girl and a great blessing. She loves her

brother, never stops talking (talks enough for both kids), can't seem to get

used to her long legs and is constantly tripping, likes our communal living

arrangement and I'll probably have to bribe her with a horrid pink room in

the new house (it's only 5 minutes away from Grammy and Grampy).

My husband Steve is a high school teacher of physics and other geeky things

at Community Christian School. He was an engineer in the hi tech industry

until it crashed a few years ago and really enjoys his new career. I expect

to find him and my dad clinging to each other and crying when we finally

move out...

I am a tax manager for a large multi-state company, which I like and get to

travel alot, which I also like, but at the moment I'm more obsessed with our

new home-to-be - window coverings, patio or deck, and a whole house filled

with new walls to paint! Sublime.

I normally lurk which is a good thing as you can see my propensity to

blather on and on....

[Guest guest]

Re Hello,

I guess you have to be careful what you ask for, because you just might get

it. I went from 0 emails to 72 when I got home from work. Feels nice : )

I'm , Mom to Sammy (10 DS), the child who after this holiday I'm sure

has more toys than there are stars in the heavens and New Wife to Jim (I can't

believe I got married again!). We live in Cliffside Park, NJ. A hop, skip and

a jump from New York City, in fact I can see the Manhattan Skyline from my

window. (The empire State Building is still Red and Green).

Sammy's interests are Rescue Heros, Movies, Rescue Heros, Music and Rescue

Heros (anyone seeing a pattern yet?) Thank the powers that be, he has been a

healthy boy. He had a hole in his heart but it closed by the time he was three,

and his biggest issue is speech. Sometimes he talks to fast, its like a blur.

Best of all he's happy, beautiful and the most special thing in my life and

I wake up everyday and thank the powers that he is in my life.

, Lucky mom To Sammy

[Guest guest]

Re Hello,

I guess you have to be careful what you ask for, because you just might get

it. I went from 0 emails to 72 when I got home from work. Feels nice : )

I'm , Mom to Sammy (10 DS), the child who after this holiday I'm sure

has more toys than there are stars in the heavens and New Wife to Jim (I can't

believe I got married again!). We live in Cliffside Park, NJ. A hop, skip and

a jump from New York City, in fact I can see the Manhattan Skyline from my

window. (The empire State Building is still Red and Green).

Sammy's interests are Rescue Heros, Movies, Rescue Heros, Music and Rescue

Heros (anyone seeing a pattern yet?) Thank the powers that be, he has been a

healthy boy. He had a hole in his heart but it closed by the time he was three,

and his biggest issue is speech. Sometimes he talks to fast, its like a blur.

Best of all he's happy, beautiful and the most special thing in my life and

I wake up everyday and thank the powers that he is in my life.

, Lucky mom To Sammy

[Guest guest]

Hi I'm Marcia (mar-cee-a not marsha) and I have been married to my husband

Bob for 19 years and we have one son who is 6 (ds). We also live in

Colorado and love it here. The last place we lived was New Orleans so life

without humidity is GOOD. is an active 6 year old who goes to a

Charter school and is fully inclusive in the 1st grade. He has had 3 holes

in his heart. The ASD closed on it's own - the PDA was closed with a coil -

and he lives with the VSD so long as I remember the antibiotics when he has

a dentist appointment. We've been lucky that this has been his only issue.

Other than having to teach the local school system on inclusion practices

life is good. has been married to Krystal's daughter since

they were 3 ( it's a great thing to be able to choose your in-laws) and

we'll see how long it lasts. He enjoys playing ball, meeting new people and

getting them to play with him, watching Dora the Explorer, and building

towers to the ceiling with his legos. We are also building a house (7

houses away from Krystal) and are trying to sell the one we are currently

living in - so anyone that knows anyone looking for a house in the Denver

area give us a jingle )) We have lots of family support as my family

lives here and with being the only grandchild he gets away with

murder but I get a great break on clothes buying since my mom and sister are

shopaholics. My husband is an accountant/computer programmer so big time

geek. I work for a Broadcast software company helping TV salespeople all

day.

Hope everyone has a great New Year's!

Introductions

Since things have been quiet, let's do introductions again. For those who

haven't been here when it's been done, you can introduce your whole family

with a blurb about each one. You can also give your location - and please

include your child with DS's medical issues - others may be lurking and

prefer private emailing.

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.823 / Virus Database: 561 - Release Date: 12/27/2004

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

[Guest guest]

Hi I'm Marcia (mar-cee-a not marsha) and I have been married to my husband

Bob for 19 years and we have one son who is 6 (ds). We also live in

Colorado and love it here. The last place we lived was New Orleans so life

without humidity is GOOD. is an active 6 year old who goes to a

Charter school and is fully inclusive in the 1st grade. He has had 3 holes

in his heart. The ASD closed on it's own - the PDA was closed with a coil -

and he lives with the VSD so long as I remember the antibiotics when he has

a dentist appointment. We've been lucky that this has been his only issue.

Other than having to teach the local school system on inclusion practices

life is good. has been married to Krystal's daughter since

they were 3 ( it's a great thing to be able to choose your in-laws) and

we'll see how long it lasts. He enjoys playing ball, meeting new people and

getting them to play with him, watching Dora the Explorer, and building

towers to the ceiling with his legos. We are also building a house (7

houses away from Krystal) and are trying to sell the one we are currently

living in - so anyone that knows anyone looking for a house in the Denver

area give us a jingle )) We have lots of family support as my family

lives here and with being the only grandchild he gets away with

murder but I get a great break on clothes buying since my mom and sister are

shopaholics. My husband is an accountant/computer programmer so big time

geek. I work for a Broadcast software company helping TV salespeople all

day.

Hope everyone has a great New Year's!

Introductions

Since things have been quiet, let's do introductions again. For those who

haven't been here when it's been done, you can introduce your whole family

with a blurb about each one. You can also give your location - and please

include your child with DS's medical issues - others may be lurking and

prefer private emailing.

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.823 / Virus Database: 561 - Release Date: 12/27/2004

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

[Guest guest]

Hello Kim,

Thursday, December 30, 2004, 12:02:27 PM, you wrote:

> I work for DIRECTV as a project manager.

I have Dish Network, but I don't work for them, but I have stayed in a

Holiday Inn Express in the past!

--

Best regards,

Tim mailto:tcasten@...

[Guest guest]

Hello Kim,

Thursday, December 30, 2004, 12:02:27 PM, you wrote:

> I work for DIRECTV as a project manager.

I have Dish Network, but I don't work for them, but I have stayed in a

Holiday Inn Express in the past!

--

Best regards,

Tim mailto:tcasten@...

[Guest guest]

-Thanks Tim! Not sure why you have Dish but I wish you luck. You must

not like football.

Kim

Re: Introductions

Hello Kim,

Thursday, December 30, 2004, 12:02:27 PM, you wrote:

> I work for DIRECTV as a project manager.

I have Dish Network, but I don't work for them, but I have stayed in a

Holiday Inn Express in the past!

--

Best regards,

Tim mailto:tcasten@...

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

[Guest guest]

-Thanks Tim! Not sure why you have Dish but I wish you luck. You must

not like football.

Kim

Re: Introductions

Hello Kim,

Thursday, December 30, 2004, 12:02:27 PM, you wrote:

> I work for DIRECTV as a project manager.

I have Dish Network, but I don't work for them, but I have stayed in a

Holiday Inn Express in the past!

--

Best regards,

Tim mailto:tcasten@...

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

[Guest guest]

Hi,

I'm Roni. We have three boys our youngest has DS. will be eight on

the eighth of January. We are near Spokane now, but will be moving back to GA

at the end of February.

Roni

[Guest guest]

Hi,

I'm Roni. We have three boys our youngest has DS. will be eight on

the eighth of January. We are near Spokane now, but will be moving back to GA

at the end of February.

Roni

[Guest guest]

My name is Sue, and I am married to Jim. We have four children. All of them

are adopted.

is 12 and has Down syndrome. He was also born with 2 ASDs, a VSD and a

bad mitral valve. He had surgery at age 2 1/2. He was fully included up

until this year. He moved to the middle school, and due to budget cuts, the

school for the arts, he was scheduled to be included in, was closed and everyone

was moved to the middle school. 1300 children in the space for 900. All

classes are overfull, and taught lecture style. We decided that Zack would not

thrive in that environment, so reluctantly, we put him in a mainstreaming

program.

We made a circle of friends from his gradeschool friends, so he gets plenty

of time with them during his inclusion classes and lunch. They have

complained to me, repeatedly, about wanting Zack to be back with them, and we

may

rethink his placement next year. Meanwhile he seems happy and is learning, and

making new friends, while keeping track of his old friends.. He has a problem

with constipation, which obviously, affects his behavior. He has been

misdiagnosed with ADD and things like that. We are currently working with a

gastroenterologist to try to get him regular. He is very athletic, and plays

basketball, baseball, tennis, golf, swims, skates, you name it! He is a typical

preteen, always stealing my CD's and Dvd's or playing PS2.

Matt is 11. He was born with 's Anomaly, Cataracts and Glaucoma. He

was labeled a " vegetable " at birth. He is blind in one eye, and will probably

lose his sight in the other before adulthood. He has also been diagnosed with

PDD, PFO and a hearing loss. He is fully included in 5th grade and doing

grade level work with the only modification being large print. He is not able

to

supposed to play sports involving balls, because of his sight, but we sneak in

some tennis with a helmet and goggles (he is so bad, it is mostly ball

chasing), and some golf. He also swims like a fish. He also loves his video

games,

but can't always see well enough to play. So, he directs while Zack plays

for him.

is our youngest son. He would be 8 years old now. He was killed, on

12/31/00, at the age of four, by medical negligence. He was also born with Down

syndrome, two months premature. He was born with TOF and had several

surgeries during his life. He was labeled a " vegetable " at 6 weeks old and sent

to

an institution to die. My husband and I fought to get him out and finally

brought him home for good at 1 1/2. He overcame all the doctors " gloom and

doom "

predictions and was getting ready to be included in kindergarten when he died.

He was oversedated for a CT scan with Chloral Hydrate and Versed, and then

his heart monitor was turned off by his nurse, because he (the nurse) was

bothered by it's constant ringing. He was Zack's " shadow " and Zack is still

very

upset about his death. Both boys thought that maybe it was their fault,

because they were naughty. It was so sad to see them blaming themselves. We

have

tried to reassure them, that losing had nothing to do with them.

Sami is our little girl. She just turned 2. chose her out of all the

babies to send to us. Her birthmother is severely autistic. Sami is showing

some signs of a sensory dysfunction herself. We are not yet sure if it is

something like Aspberger's or PDD or if it is a milder sensory dysfunction. She

currently gets DT, OT and should be getting speech, but the list is too long.

She takes swimming lessons, like her brothers and loves the water. She is

usually sweet and loving, and likes to be spoiled. But, on occasion, she gets

overwhelmed, and claws and bites people or throws things and cannot be calmed

down. We are looking into options for her when she turns three, as our

experience with our district's ECP have not been good.

Sue - mom to Zack, 12, DS, 2 ASDs, VSD, Bad Mitral Valve; Matt, 11, 's

Anamoly, Cataracts, Glaucoma, PDD, PFO, hearing loss; , (4/20/96 -

12/31/00), DS, g-tube, TOF; Sami, born 11/16/2002, sensory dysfunction and

possible

autism, the most spoiled princess

DisLabeled Writing

's Memorial Page

's Candle Shrine

[Guest guest]

My name is Sue, and I am married to Jim. We have four children. All of them

are adopted.

is 12 and has Down syndrome. He was also born with 2 ASDs, a VSD and a

bad mitral valve. He had surgery at age 2 1/2. He was fully included up

until this year. He moved to the middle school, and due to budget cuts, the

school for the arts, he was scheduled to be included in, was closed and everyone

was moved to the middle school. 1300 children in the space for 900. All

classes are overfull, and taught lecture style. We decided that Zack would not

thrive in that environment, so reluctantly, we put him in a mainstreaming

program.

We made a circle of friends from his gradeschool friends, so he gets plenty

of time with them during his inclusion classes and lunch. They have

complained to me, repeatedly, about wanting Zack to be back with them, and we

may

rethink his placement next year. Meanwhile he seems happy and is learning, and

making new friends, while keeping track of his old friends.. He has a problem

with constipation, which obviously, affects his behavior. He has been

misdiagnosed with ADD and things like that. We are currently working with a

gastroenterologist to try to get him regular. He is very athletic, and plays

basketball, baseball, tennis, golf, swims, skates, you name it! He is a typical

preteen, always stealing my CD's and Dvd's or playing PS2.

Matt is 11. He was born with 's Anomaly, Cataracts and Glaucoma. He

was labeled a " vegetable " at birth. He is blind in one eye, and will probably

lose his sight in the other before adulthood. He has also been diagnosed with

PDD, PFO and a hearing loss. He is fully included in 5th grade and doing

grade level work with the only modification being large print. He is not able

to

supposed to play sports involving balls, because of his sight, but we sneak in

some tennis with a helmet and goggles (he is so bad, it is mostly ball

chasing), and some golf. He also swims like a fish. He also loves his video

games,

but can't always see well enough to play. So, he directs while Zack plays

for him.

is our youngest son. He would be 8 years old now. He was killed, on

12/31/00, at the age of four, by medical negligence. He was also born with Down

syndrome, two months premature. He was born with TOF and had several

surgeries during his life. He was labeled a " vegetable " at 6 weeks old and sent

to

an institution to die. My husband and I fought to get him out and finally

brought him home for good at 1 1/2. He overcame all the doctors " gloom and

doom "

predictions and was getting ready to be included in kindergarten when he died.

He was oversedated for a CT scan with Chloral Hydrate and Versed, and then

his heart monitor was turned off by his nurse, because he (the nurse) was

bothered by it's constant ringing. He was Zack's " shadow " and Zack is still

very

upset about his death. Both boys thought that maybe it was their fault,

because they were naughty. It was so sad to see them blaming themselves. We

have

tried to reassure them, that losing had nothing to do with them.

Sami is our little girl. She just turned 2. chose her out of all the

babies to send to us. Her birthmother is severely autistic. Sami is showing

some signs of a sensory dysfunction herself. We are not yet sure if it is

something like Aspberger's or PDD or if it is a milder sensory dysfunction. She

currently gets DT, OT and should be getting speech, but the list is too long.

She takes swimming lessons, like her brothers and loves the water. She is

usually sweet and loving, and likes to be spoiled. But, on occasion, she gets

overwhelmed, and claws and bites people or throws things and cannot be calmed

down. We are looking into options for her when she turns three, as our

experience with our district's ECP have not been good.

Sue - mom to Zack, 12, DS, 2 ASDs, VSD, Bad Mitral Valve; Matt, 11, 's

Anamoly, Cataracts, Glaucoma, PDD, PFO, hearing loss; , (4/20/96 -

12/31/00), DS, g-tube, TOF; Sami, born 11/16/2002, sensory dysfunction and

possible

autism, the most spoiled princess

DisLabeled Writing

's Memorial Page

's Candle Shrine

[Guest guest]

Hello Jayne,

Thursday, December 30, 2004, 12:07:54 PM, you wrote:

> and a golden retriever named Buddy.

geee nothing like copying from a movie.

I say that as I stand at attention saluting a member of our Armed

Forces!

--

Best regards,

Tim mailto:tcasten@...

[Guest guest]

Hello Jayne,

Thursday, December 30, 2004, 12:07:54 PM, you wrote:

> and a golden retriever named Buddy.

geee nothing like copying from a movie.

I say that as I stand at attention saluting a member of our Armed

Forces!

--

Best regards,

Tim mailto:tcasten@...

[Guest guest]

I think meant to send this to the listserv. If you don't hit " reply all "

it doesn't go to the list.

Welcome - sounds adorable

Jayne

Varrieur <onlyjjl@...> wrote:

Date: Thu, 30 Dec 2004 11:42:33 -0800 (PST)

From: Varrieur

Subject: Re: Introductions

Jayne Hickey

Hi all,

My name is . I've been with my husband 5 years and we have a 2 1/2 year old

son (ds). I have 2 girls 11, 16 from a previous marriage. Ron has 2

sons from his prior marriage, 15 an 19. We live in a quiet town in Connecticut.

Joshie has had 4 surgeries in all.. He had his asd repaired two sets of tubes

and oral surgery. He was due to get tubes and adnoids out yesterday but he came

down with a cold. Our hardest challenge has been keeping his sugar level

normal. He diagnoised with type one diabetes when he was 19 months. He will be

starting school this Febuary. His strengths include his speech and his

wonderful beautiful outgoing personality... He still is very small only weighing

24 pounds this has been an issue from day one. (He was 6 weeks early and spent

6 weeks in the nic-u.)

My girls are my mini mommies they love him so much.. The boys love him too.

We have had a couple of bads years. We had a house fire about 2 years ago. Ron

lost his sister last year. And last but not least the company Ron worked for

for 26 years relocated to China.. Well with all that said we are blessed having

each other and our beautiful children.

Ron will be attending college in Febuary and I hope to go back to work soon.. I

have never not worked and since the day Joshie was born I have been a stay at

home mom. But money is tight and I need my sanity back..lol Well I am very

glad I joined this sight a couple months ago. I have had so many questions

answered... Thank you all and god bless. And everyone have a great New

year....

wife to Ron mommy to April 16 Alyssa 11 and Joshie 2 almost 3

Jayne Hickey <jacksonsmom99@...> wrote:

Hi everyone,

My name is Jayne. I'm married to and we have three children and a golden

retriever named Buddy. We just moved to Virginia from South Dakota late this

summer. My husband is in the Air Force which means we relocate on average every

two years! He is currently working a Joint Staff Job with the Navy, the only

reason we are blessed with a water nearby - otherwise it's the flat land of The

Air Force! I came to this list 5 1/2 years ago when our youngest son, ,

was born - it has been such a source of support for me. Moving so often, it's

hard to put down roots - but I can always come back to this list where I feel

like I fit in - no questions asked.

was born healthy, he had some struggles with weight gain and feeding in

the beginning but made it through. He was a popular guy with his lady

therapists through the birth to 3 early intervention years -he logged a lot of

therapists with all our moves. For a Mommy that was always " go, go, go "

's birth taught me to slow down. I was never home until my calendar

became very full with all the therapists coming and going to our home.

had his first surgery at 2 1/2, tonsils and adenoids removed and tubes put in.

When turned 3 he was off to preschool. He attended the same typical

preschool my daughter attended but with an aide. He also attended an early

intervention preschool on his opposite days of his other school. He loved the

bus and his gaggle of therapists and teachers. When we moved away we took a

picture with all his " ladies " , it looked like his harem!

This year we started what was supposed to be an uneventful year of kindergarten

in a new area. It's been a rollercoaster. We fought and fought with this

school district for to be fully included in reg ed kindergarten with a

1:1 aide. Seems pretty simple but apparently not. They translated his needs

into being in a self-contained special needs preschool with 4 other non-verbal

boys! Quite the opposite of what we had planned on. After coming as close as

we could to a lawsuit, we got moved into a new school in our county that

is far more special needs friendly. He started there November 1st and is really

starting to grow. He missed alot of school his first month there due to illness

and his second set of tubes. In between all of this, was recently

diagnosed with Autistic Spectrum Disorder - ASD. We are currently learning all

that this new branch of our life encompasses. is in a special ed

classroom for kindergarten and first grade and being

included with a kindergarten class for various things throughout the day. I

have held back on my big push for full inclusion right now as I think we have to

get 's learning style down first. I do anticipate he will attend

kindergarten again next year and I hope to see him included much more and get

the support he needs to get through it gracefully. I just need to pick my

battles right now - number 1 being how to get through to my child and how to cut

down on some of his behaviors.

's speech is his greatest challenge. Like the rest of the kiddos on this

list, his receptive language is pretty good - if he feels like listening at the

moment. His expressive language is growing, slowly but surely. Thanks to his

obsession with videos, he's starting to sing along, in his way, with the tv

songs. He's very into any sport that uses a ball but loves to watch football,

basketball, soccer, and his favorite - bull riding! He's also crazy about GI

Joe " dolls " and all the guns they come with!! Lucky me!

I do have two other children as well. is 13 and entering into the " mom you

are so uncool " stage. He's quite interested in the girls now and is also

experimenting with growing his hair out! He's a straight A student, very

sensitive, a wonderful big brother, and a great athlete. My middle child, Emma,

is 8 and before - was my challenge! I laugh now at the things that she

did that made me want to pull my hair out - nothing compared to the continuous

cycle of action . She too is blessed with the good student gene, not

from their mother, and the amazing athlete gene as well. (I like to think I

have something to do with this one as I was once quite athletic many moons

ago...) (But hey, we are joining the Y next week!!!) She's a gymnast at heart

and spends most her waking hours upside down or twisting and turning off of some

piece of furniture. She's a bubbly little girl, who also has the longest legs

like someone else stated about their daughter. Both and

Emma are wonderful siblings to , they have more patience than I do at

times. They are trying to understand this new ASD diagnosis and constantly

trying to figure out what will be like when he gets older. They are

waiting for him to talk and stop making a scene in public! I tell them I don't

know if that day will come, but until then they help tons with his daily care.

They get nervous when we meet someone older with Ds that doesn't talk or talks

but is hard to understand. I think reality hits for my oldest and his dream of

being " normal " is put to rest. I think it scares them that he will

always sort of stand out in a crowd. Recently my daughter had the wonderful

opportunity of meeting , Cheryl Wards daughter at our local Buddy Walk.

Cheryl is " wildwards " on this list serv. She was amazed with and her

clarity of speech and how " normal " she was. She told my son all about her and I

think it was reassuring to see what all this hard

work we parents do can really pay off. I know that whatever grows up to

" be " , they will love him unconditionally as we all will - we just take it day by

day and deal with each new branch of our tree of life as best as we can.

Thanks to , I was directed to the listserv like Krystal, and that

has been a huge change for our family as well. I enjoy both of these lists so

much and look forward to the day that I can meet any of you in person!

Thanks for always being quick to answer my thousands of questions. And a huge

thank you for sharing your life stories so that I can see that sometimes when I

feel so all alone in this Ds little world of ours, I can read a post and

immediately know that I'm not alone.

love to you all and Happy HAPPY New Year!

Jayne

__________________________________________________

[Guest guest]

I think meant to send this to the listserv. If you don't hit " reply all "

it doesn't go to the list.

Welcome - sounds adorable

Jayne

Varrieur <onlyjjl@...> wrote:

Date: Thu, 30 Dec 2004 11:42:33 -0800 (PST)

From: Varrieur

Subject: Re: Introductions

Jayne Hickey

Hi all,

My name is . I've been with my husband 5 years and we have a 2 1/2 year old

son (ds). I have 2 girls 11, 16 from a previous marriage. Ron has 2

sons from his prior marriage, 15 an 19. We live in a quiet town in Connecticut.

Joshie has had 4 surgeries in all.. He had his asd repaired two sets of tubes

and oral surgery. He was due to get tubes and adnoids out yesterday but he came

down with a cold. Our hardest challenge has been keeping his sugar level

normal. He diagnoised with type one diabetes when he was 19 months. He will be

starting school this Febuary. His strengths include his speech and his

wonderful beautiful outgoing personality... He still is very small only weighing

24 pounds this has been an issue from day one. (He was 6 weeks early and spent

6 weeks in the nic-u.)

My girls are my mini mommies they love him so much.. The boys love him too.

We have had a couple of bads years. We had a house fire about 2 years ago. Ron

lost his sister last year. And last but not least the company Ron worked for

for 26 years relocated to China.. Well with all that said we are blessed having

each other and our beautiful children.

Ron will be attending college in Febuary and I hope to go back to work soon.. I

have never not worked and since the day Joshie was born I have been a stay at

home mom. But money is tight and I need my sanity back..lol Well I am very

glad I joined this sight a couple months ago. I have had so many questions

answered... Thank you all and god bless. And everyone have a great New

year....

wife to Ron mommy to April 16 Alyssa 11 and Joshie 2 almost 3

Jayne Hickey <jacksonsmom99@...> wrote:

Hi everyone,

My name is Jayne. I'm married to and we have three children and a golden

retriever named Buddy. We just moved to Virginia from South Dakota late this

summer. My husband is in the Air Force which means we relocate on average every

two years! He is currently working a Joint Staff Job with the Navy, the only

reason we are blessed with a water nearby - otherwise it's the flat land of The

Air Force! I came to this list 5 1/2 years ago when our youngest son, ,

was born - it has been such a source of support for me. Moving so often, it's

hard to put down roots - but I can always come back to this list where I feel

like I fit in - no questions asked.

was born healthy, he had some struggles with weight gain and feeding in

the beginning but made it through. He was a popular guy with his lady

therapists through the birth to 3 early intervention years -he logged a lot of

therapists with all our moves. For a Mommy that was always " go, go, go "

's birth taught me to slow down. I was never home until my calendar

became very full with all the therapists coming and going to our home.

had his first surgery at 2 1/2, tonsils and adenoids removed and tubes put in.

When turned 3 he was off to preschool. He attended the same typical

preschool my daughter attended but with an aide. He also attended an early

intervention preschool on his opposite days of his other school. He loved the

bus and his gaggle of therapists and teachers. When we moved away we took a

picture with all his " ladies " , it looked like his harem!

This year we started what was supposed to be an uneventful year of kindergarten

in a new area. It's been a rollercoaster. We fought and fought with this

school district for to be fully included in reg ed kindergarten with a

1:1 aide. Seems pretty simple but apparently not. They translated his needs

into being in a self-contained special needs preschool with 4 other non-verbal

boys! Quite the opposite of what we had planned on. After coming as close as

we could to a lawsuit, we got moved into a new school in our county that

is far more special needs friendly. He started there November 1st and is really

starting to grow. He missed alot of school his first month there due to illness

and his second set of tubes. In between all of this, was recently

diagnosed with Autistic Spectrum Disorder - ASD. We are currently learning all

that this new branch of our life encompasses. is in a special ed

classroom for kindergarten and first grade and being

included with a kindergarten class for various things throughout the day. I

have held back on my big push for full inclusion right now as I think we have to

get 's learning style down first. I do anticipate he will attend

kindergarten again next year and I hope to see him included much more and get

the support he needs to get through it gracefully. I just need to pick my

battles right now - number 1 being how to get through to my child and how to cut

down on some of his behaviors.

's speech is his greatest challenge. Like the rest of the kiddos on this

list, his receptive language is pretty good - if he feels like listening at the

moment. His expressive language is growing, slowly but surely. Thanks to his

obsession with videos, he's starting to sing along, in his way, with the tv

songs. He's very into any sport that uses a ball but loves to watch football,

basketball, soccer, and his favorite - bull riding! He's also crazy about GI

Joe " dolls " and all the guns they come with!! Lucky me!

I do have two other children as well. is 13 and entering into the " mom you

are so uncool " stage. He's quite interested in the girls now and is also

experimenting with growing his hair out! He's a straight A student, very

sensitive, a wonderful big brother, and a great athlete. My middle child, Emma,

is 8 and before - was my challenge! I laugh now at the things that she

did that made me want to pull my hair out - nothing compared to the continuous

cycle of action . She too is blessed with the good student gene, not

from their mother, and the amazing athlete gene as well. (I like to think I

have something to do with this one as I was once quite athletic many moons

ago...) (But hey, we are joining the Y next week!!!) She's a gymnast at heart

and spends most her waking hours upside down or twisting and turning off of some

piece of furniture. She's a bubbly little girl, who also has the longest legs

like someone else stated about their daughter. Both and

Emma are wonderful siblings to , they have more patience than I do at

times. They are trying to understand this new ASD diagnosis and constantly

trying to figure out what will be like when he gets older. They are

waiting for him to talk and stop making a scene in public! I tell them I don't

know if that day will come, but until then they help tons with his daily care.

They get nervous when we meet someone older with Ds that doesn't talk or talks

but is hard to understand. I think reality hits for my oldest and his dream of

being " normal " is put to rest. I think it scares them that he will

always sort of stand out in a crowd. Recently my daughter had the wonderful

opportunity of meeting , Cheryl Wards daughter at our local Buddy Walk.

Cheryl is " wildwards " on this list serv. She was amazed with and her

clarity of speech and how " normal " she was. She told my son all about her and I

think it was reassuring to see what all this hard

work we parents do can really pay off. I know that whatever grows up to

" be " , they will love him unconditionally as we all will - we just take it day by

day and deal with each new branch of our tree of life as best as we can.

Thanks to , I was directed to the listserv like Krystal, and that

has been a huge change for our family as well. I enjoy both of these lists so

much and look forward to the day that I can meet any of you in person!

Thanks for always being quick to answer my thousands of questions. And a huge

thank you for sharing your life stories so that I can see that sometimes when I

feel so all alone in this Ds little world of ours, I can read a post and

immediately know that I'm not alone.

love to you all and Happy HAPPY New Year!

Jayne

__________________________________________________

[Guest guest]

Hi,

Jeannette here mom and domestic goddess when needed. Otherwise I am a

Cytotechnologist by profession.

DH Jerry plays with rocks at college LOL. Actually he is a geology curator

and sells rocks minerals fossils and meteorites world wide. Yes my washer has

rocks in it!!!!! He is a Celtic harpist and has 8 albums out. Yeah one of

those Jacks of all trades and darned if he isn't a master of them too.

Oldest Jacques is 19 and in college and not sure what he wants to do(ADHD)

..Avid cyber gamer and works in the produce department at local store.

Grant 17 with DS. Plays electric guitar goes to 11th grade and loves movies,

xbox.

Grant has been a camp counselor for 2 summers, worked making pizzas at a

local elementary school, hair salon duster and towel washer,Sport store trash

cleaning and so on. Trying the local VA hospital dishwasher out.

Special Olympian in floor hockey, bowling,track and field. Loves going to

games WITHOUT mom on what he calls field trips.

Medical issues for Grant--cholesteatoma, mastoidectomy ,intestinal

malrotation,testicle hydroceles. Acid reflux---BTW it can cause repeated sinus

infections if not treated.

Mom currently on WW CORE and doing awesome down 26lbs.

Jeannette

[Guest guest]

Hi,

Jeannette here mom and domestic goddess when needed. Otherwise I am a

Cytotechnologist by profession.

DH Jerry plays with rocks at college LOL. Actually he is a geology curator

and sells rocks minerals fossils and meteorites world wide. Yes my washer has

rocks in it!!!!! He is a Celtic harpist and has 8 albums out. Yeah one of

those Jacks of all trades and darned if he isn't a master of them too.

Oldest Jacques is 19 and in college and not sure what he wants to do(ADHD)

..Avid cyber gamer and works in the produce department at local store.

Grant 17 with DS. Plays electric guitar goes to 11th grade and loves movies,

xbox.

Grant has been a camp counselor for 2 summers, worked making pizzas at a

local elementary school, hair salon duster and towel washer,Sport store trash

cleaning and so on. Trying the local VA hospital dishwasher out.

Special Olympian in floor hockey, bowling,track and field. Loves going to

games WITHOUT mom on what he calls field trips.

Medical issues for Grant--cholesteatoma, mastoidectomy ,intestinal

malrotation,testicle hydroceles. Acid reflux---BTW it can cause repeated sinus

infections if not treated.

Mom currently on WW CORE and doing awesome down 26lbs.

Jeannette