Re: Interesting newsletter

July 9, 2008

I'm not ette but I don't homeschool either and Timberdoodle has long been on my radar screen to order things for . Years ago they were the only ones who carried a computer program, the name is escaping me now but it was great and one of 's favorites and we ordered that from them.

Great company!

Kathy

[DownSyndromeInfoExchange] Interesting newsletterTo: "DS List" <DownSyndromeInfoExchange >Date: Tuesday, July 8, 2008, 10:05 PM

Timberdoodle is a neat little company that sells homeschool and specialty schooling items. This is the recent newsletter they sent out about a child with autism that they help to school. The insights in the newsletter are quite touching, especially in light of our recent conversation about "curing" our kids.

http://www.timberdoodle.com/newsletter/july2008.html

ette

mom to Faith (10)DS

July 9, 2008

First off, please read this with a calm tone, no anger, no sarcasm. If you were sitting here with me, that would be my demeanor. :-)All types of adversity are used by God to teach us. It says so in the Bible. It also says that we are to love one another and be willing to lay down our lives, not be willing to let others lay their's down for *our* benefit. I think this is the height of Christian hypocrisy to willingly deny treatment to another human being for our own sanctification.I learned many lessons in trust, hope and perseverance in dealing with 's heart. I have heard many parents say this as well on other lists that are just for heart defects, but not one of us would entertain the notion that we should allow it to go on in order for us to have more personal growth

opportunities. ack...Nor would anyone suggest a person with bi-polor get off their meds and suffer so others could be afforded the chance to be better sanctified through their suffering. Nor would I encourage my teens to continue on in their, at times, EXTREMELY, sanctifying behavior! ;-)It makes no sense at all. And truly, this is very un-Christian like, and selfish.The only benifits people are touting to with hold medical treatment for people with DD is for THEIR well being !!! I undertstand this, I honestly love her as she is, I enjoy being part of the DS community, I enjoy all the insights she affords me in this life, I owe her a great debt for all the lessons she has taught me. I really believe that she will be first in heaven because of this sacrifice on *her* part. But for me to deny her a life just because it's going to be painful for me???God forbid. I think that would be a sin.Remember... happy tones..

smiley faces.... just talking and adding my perspective to the mix. :-) Carol in IL AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me. Join our Down Syndrome information group - http://health.groups.yahoo.com/group/DownSyndromeInfoExchange/ Listen to oldest dd's music http://www.myspace.com/vennamusic10)DS

July 9, 2008

First off, please read this with a calm tone, no anger, no sarcasm. If you were sitting here with me, that would be my demeanor. :-)All types of adversity are used by God to teach us. It says so in the Bible. It also says that we are to love one another and be willing to lay down our lives, not be willing to let others lay their's down for *our* benefit. I think this is the height of Christian hypocrisy to willingly deny treatment to another human being for our own sanctification.I learned many lessons in trust, hope and perseverance in dealing with 's heart. I have heard many parents say this as well on other lists that are just for heart defects, but not one of us would entertain the notion that we should allow it to go on in order for us to have more personal growth

opportunities. ack...Nor would anyone suggest a person with bi-polor get off their meds and suffer so others could be afforded the chance to be better sanctified through their suffering. Nor would I encourage my teens to continue on in their, at times, EXTREMELY, sanctifying behavior! ;-)It makes no sense at all. And truly, this is very un-Christian like, and selfish.The only benifits people are touting to with hold medical treatment for people with DD is for THEIR well being !!! I undertstand this, I honestly love her as she is, I enjoy being part of the DS community, I enjoy all the insights she affords me in this life, I owe her a great debt for all the lessons she has taught me. I really believe that she will be first in heaven because of this sacrifice on *her* part. But for me to deny her a life just because it's going to be painful for me???God forbid. I think that would be a sin.Remember... happy tones..

smiley faces.... just talking and adding my perspective to the mix. :-) Carol in IL AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me. Join our Down Syndrome information group - http://health.groups.yahoo.com/group/DownSyndromeInfoExchange/ Listen to oldest dd's music http://www.myspace.com/vennamusic10)DS

July 9, 2008

Excuse me?! What you are saying here and what this newsletter article are saying are two entirely different things! The 10 yr. old girl with autism was not their daughter; it sounds like they were probably providing respite care for her for a few days from time to time. The article has nothing at all to do with supplements or medications... the child's parents may well be leaving no stone unturned to try to find something that will enable her to live a bit less at odds with the world. NEVERTHELESS, "every day is a struggle to adapt to her significant brain disconnect" and "no matter what we do it seems like this bundle of mischief will never be cured"!

There are moms on this list with children with dual diagnosis of DS and autism, DS and OCD, or even just DS complicated with so many other physical problems that the development of the child has been not just delayed but stopped altogether! Until we have walked in their shoes, we cannot judge. They see no hope of improving things for their child because their hopes have been dashed again and again. They have come to a place of acceptance of the fact that their child is probably never going to "get better", and they are choosing to still see the silver lining in the cloud, to focus on just loving on the child and delighting in the beauty and uniqueness that God has placed within. PLEASE, let's all encourage and support them!!!

It's like the Serenity Prayer:

God grant me the serenityto accept the thingsI cannot change,the courage to change the things I can,and the wisdom to know the difference.

May the LORD bless each one of you and keep you!

May the LORD make HIS face to shine upon you!

May the LORD give you HIS PEACE!

(one and only wife to Fred; mom to Kari, Melody, Faith, Heidi, Isaac, Josiah, , Alana, and ! Yes, they're all ours!)

Is. 40:31 "They that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles, they shall run and not be weary, they shall walk and not faint."

Subject: Re: [DownSyndromeInfoExchange] Interesting newsletterTo: DownSyndromeInfoExchange Date: Wednesday, July 9, 2008, 10:40 AM

First off, please read this with a calm tone, no anger, no sarcasm. If you were sitting here with me, that would be my demeanor. :-)All types of adversity are used by God to teach us. It says so in the Bible. It also says that we are to love one another and be willing to lay down our lives, not be willing to let others lay their's down for *our* benefit. I think this is the height of Christian hypocrisy to willingly deny treatment to another human being for our own sanctification.I learned many lessons in trust, hope and perseverance in dealing with 's heart. I have heard many parents say this as well on other lists that are just for heart defects, but not one of us would entertain the notion that we should allow it to go on in order for us to have more personal growth opportunities. ack...Nor would anyone suggest a person with bi-polor

get off their meds and suffer so others could be afforded the chance to be better sanctified through their suffering. Nor would I encourage my teens to continue on in their, at times, EXTREMELY, sanctifying behavior! ;-)It makes no sense at all. And truly, this is very un-Christian like, and selfish.The only benifits people are touting to with hold medical treatment for people with DD is for THEIR well being !!! I undertstand this, I honestly love her as she is, I enjoy being part of the DS community, I enjoy all the insights she affords me in this life, I owe her a great debt for all the lessons she has taught me. I really believe that she will be first in heaven because of this sacrifice on *her* part. But for me to deny her a life just because it's going to be painful for me???God forbid. I think that would be a sin.Remember... happy tones.. smiley faces.... just talking and adding my perspective to the mix.

:-)

Carol in IL

AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/

Listen to oldest dd's music http://www.myspace. com/vennamusic

10)DS

July 9, 2008

Ok I am taking deep breaths here cos I am starting to be a bit annoyed . I deffo need to go back to lurking !!!! I did not read in ANY post here that parents had "given up " on improving things for their children.What I read was that parents are choosing different paths . That is their right . Less invasive . more invasive , there's a whole spectrum of interventions and each decided what is best for their child. I can't believe any parent would do that!!! I am friendly with the mother of a 39 year old man with ds who was determined he would learn to swim this year and guess what ?? He did !!! We are sooo lucky ( yes lucky!!!) that our kids have DS because DS is amazing in the fact that our kids can learn right up until the day they die ( in very old age we hope) . Yes its tiring sometimes but I don't believe people have given up hope of improving things for their kids.

God grant me the serenityto accept the thingsI cannot change,the courage to change the things I can,and the wisdom to know the difference.

I too love this prayer , it gives me the courage to try to change the things I can for my son AND accept the things I cant !!!! I do walk in their shoes my son has other issue that complicate his downs and hey just downs on its own can be no picnic either !! Lord knows we are all in this together. That's why we are on this list.

Re: [DownSyndromeInfoExchange] Interesting newsletterTo: DownSyndromeInfoExchange Date: Wednesday, July 9, 2008, 10:40 AM

First off, please read this with a calm tone, no anger, no sarcasm. If you were sitting here with me, that would be my demeanor. :-)All types of adversity are used by God to teach us. It says so in the Bible. It also says that we are to love one another and be willing to lay down our lives, not be willing to let others lay their's down for *our* benefit. I think this is the height of Christian hypocrisy to willingly deny treatment to another human being for our own sanctification.I learned many lessons in trust, hope and perseverance in dealing with 's heart. I have heard many parents say this as well on other lists that are just for heart defects, but not one of us would entertain the notion that we should allow it to go on in order for us to have more personal growth opportunities. ack...Nor would anyone suggest a person with bi-polor get off their meds and suffer so others could be afforded the chance to be better sanctified through their suffering. Nor would I encourage my teens to continue on in their, at times, EXTREMELY, sanctifying behavior! ;-)It makes no sense at all. And truly, this is very un-Christian like, and selfish.The only benifits people are touting to with hold medical treatment for people with DD is for THEIR well being !!! I undertstand this, I honestly love her as she is, I enjoy being part of the DS community, I enjoy all the insights she affords me in this life, I owe her a great debt for all the lessons she has taught me. I really believe that she will be first in heaven because of this sacrifice on *her* part. But for me to deny her a life just because it's going to be painful for me???God forbid. I think that would be a sin.Remember... happy tones.. smiley faces.... just talking and adding my perspective to the mix. :-)

Carol in IL

AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/

Listen to oldest dd's music http://www.myspace. com/vennamusic

10)DS

July 9, 2008

ï»¿

Re: [DownSyndromeInfoExchange] Interesting newsletter

Uh, Carol, did we read the same article?

No matter what I do, it will not be changing my child into a typical child any time soon. So, in the meantime this article had a lot of meaning to me.

When I see Faith trying so hard to make connections with other kids and over and over again being looked at with "that look", it gives me courage to try to connect with people.

When I see Faith struggling to learn to tell time, or count money, it gives me incentive to keep trying to understand all the chemical and vitamin gobbly gook I try to read.

I learn a lot from her or because of her.

I'm sure this conversation would be better in person.

ette

-------------- Original message from Carol in IL : --------------

First off, please read this with a calm tone, no anger, no sarcasm. If you were sitting here with me, that would be my demeanor. :-)All types of adversity are used by God to teach us. It says so in the Bible. It also says that we are to love one another and be willing to lay down our lives, not be willing to let others lay their's down for *our* benefit. I think this is the height of Christian hypocrisy to willingly deny treatment to another human being for our own sanctification.I learned many lessons in trust, hope and perseverance in dealing with 's heart. I have heard many parents say this as well on other lists that are just for heart defects, but not one of us would entertain the notion that we should allow it to go on in order for us to have more personal growth opportunities. ack...Nor would anyone suggest a person with bi-polor get off their meds and suffer so others could be afforded the chance to be better sanctified through their suffering. Nor would I encourage my teens to continue on in their, at times, EXTREMELY, sanctifying behavior! ;-)It makes no sense at all. And truly, this is very un-Christian like, and selfish.The only benifits people are touting to with hold medical treatment for people with DD is for THEIR well being !!! I undertstand this, I honestly love her as she is, I enjoy being part of the DS community, I enjoy all the insights she affords me in this life, I owe her a great debt for all the lessons she has taught me. I really believe that she will be first in heaven because of this sacrifice on *her* part. But for me to deny her a life just because it's going to be painful for me???God forbid. I think that would be a sin.Remember... happy tones.. smiley faces.... just talking and adding my perspective to the mix. :-)

Carol in IL

AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

http://health.groups.yahoo.com/group/DownSyndromeInfoExchange/

Listen to oldest dd's music http://www.myspace.com/vennamusic

10)DS

July 9, 2008

ï»¿

Re: [DownSyndromeInfoExchange] Interesting newsletter

Uh, Carol, did we read the same article?

No matter what I do, it will not be changing my child into a typical child any time soon. So, in the meantime this article had a lot of meaning to me.

When I see Faith trying so hard to make connections with other kids and over and over again being looked at with "that look", it gives me courage to try to connect with people.

When I see Faith struggling to learn to tell time, or count money, it gives me incentive to keep trying to understand all the chemical and vitamin gobbly gook I try to read.

I learn a lot from her or because of her.

I'm sure this conversation would be better in person.

ette

-------------- Original message from Carol in IL : --------------

First off, please read this with a calm tone, no anger, no sarcasm. If you were sitting here with me, that would be my demeanor. :-)All types of adversity are used by God to teach us. It says so in the Bible. It also says that we are to love one another and be willing to lay down our lives, not be willing to let others lay their's down for *our* benefit. I think this is the height of Christian hypocrisy to willingly deny treatment to another human being for our own sanctification.I learned many lessons in trust, hope and perseverance in dealing with 's heart. I have heard many parents say this as well on other lists that are just for heart defects, but not one of us would entertain the notion that we should allow it to go on in order for us to have more personal growth opportunities. ack...Nor would anyone suggest a person with bi-polor get off their meds and suffer so others could be afforded the chance to be better sanctified through their suffering. Nor would I encourage my teens to continue on in their, at times, EXTREMELY, sanctifying behavior! ;-)It makes no sense at all. And truly, this is very un-Christian like, and selfish.The only benifits people are touting to with hold medical treatment for people with DD is for THEIR well being !!! I undertstand this, I honestly love her as she is, I enjoy being part of the DS community, I enjoy all the insights she affords me in this life, I owe her a great debt for all the lessons she has taught me. I really believe that she will be first in heaven because of this sacrifice on *her* part. But for me to deny her a life just because it's going to be painful for me???God forbid. I think that would be a sin.Remember... happy tones.. smiley faces.... just talking and adding my perspective to the mix. :-)

Carol in IL

AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

http://health.groups.yahoo.com/group/DownSyndromeInfoExchange/

Listen to oldest dd's music http://www.myspace.com/vennamusic

10)DS

July 9, 2008

ï»¿

I have 4 kids total. The 2 older ones are "typical" and the 2 younger ones are Trisomy 10q and DS. I would rather have them all with Trisomy 10q and DS and not typical. Who says they are typical anyways? They talk back, not do what they are told, don't clean their rooms, stay out late, and when they are older, they drink, drive and might kill someone etc.... My 2 kids with extra chromosomes are laid back, sweet, do what they are told because they want to please. Eat without complaining about the food. They never scream and cry when we are in a store and they don't get what they want. They both go to bed by themselves and we don't have to tell them to stay in bed.

I love them just the way they are and I even love my older kids even tho they gave me alot more headaches. LOL

Re: [DownSyndromeInfoExchange] Interesting newsletter

Uh, Carol, did we read the same article?

No matter what I do, it will not be changing my child into a typical child any time soon. So, in the meantime this article had a lot of meaning to me.

When I see Faith trying so hard to make connections with other kids and over and over again being looked at with "that look", it gives me courage to try to connect with people.

When I see Faith struggling to learn to tell time, or count money, it gives me incentive to keep trying to understand all the chemical and vitamin gobbly gook I try to read.

I learn a lot from her or because of her.

I'm sure this conversation would be better in person.

ette

-------------- Original message from Carol in IL : --------------

First off, please read this with a calm tone, no anger, no sarcasm. If you were sitting here with me, that would be my demeanor. :-)All types of adversity are used by God to teach us. It says so in the Bible. It also says that we are to love one another and be willing to lay down our lives, not be willing to let others lay their's down for *our* benefit. I think this is the height of Christian hypocrisy to willingly deny treatment to another human being for our own sanctification.I learned many lessons in trust, hope and perseverance in dealing with 's heart. I have heard many parents say this as well on other lists that are just for heart defects, but not one of us would entertain the notion that we should allow it to go on in order for us to have more personal growth opportunities. ack...Nor would anyone suggest a person with bi-polor get off their meds and suffer so others could be afforded the chance to be better sanctified through their suffering. Nor would I encourage my teens to continue on in their, at times, EXTREMELY, sanctifying behavior! ;-)It makes no sense at all. And truly, this is very un-Christian like, and selfish.The only benifits people are touting to with hold medical treatment for people with DD is for THEIR well being !!! I undertstand this, I honestly love her as she is, I enjoy being part of the DS community, I enjoy all the insights she affords me in this life, I owe her a great debt for all the lessons she has taught me. I really believe that she will be first in heaven because of this sacrifice on *her* part. But for me to deny her a life just because it's going to be painful for me???God forbid. I think that would be a sin.Remember... happy tones.. smiley faces.... just talking and adding my perspective to the mix. :-)

Carol in IL

AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

http://health.groups.yahoo.com/group/DownSyndromeInfoExchange/

Listen to oldest dd's music http://www.myspace.com/vennamusic

10)DS

July 9, 2008

Maybe a little annoying, but I

appreciate a good debate. I am happy to have a forum where we are not

censored at every turn by a strict moderator. I hope I have not offended

and I appreciate the chance to discuss my views with others who think

differently.

Dinkins-Borkowski; Nolan(5)

nocf, Phoebe(3) Ds

& cf

Phoebe Updates CLICK HERE

" The future belongs to those who believe in the beauty of

their dreams. "

– Eleanor Roosevelt

From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of catherine

Sent: Wednesday, July 09, 2008 12:47 PM

To: DownSyndromeInfoExchange

Subject: Re: [DownSyndromeInfoExchange] Interesting newsletter

Ok I am

taking deep breaths here cos I am starting to be a bit annoyed . I deffo need

to go back to lurking !!!! I did not read in ANY post here

that parents had " given up " on improving things for their

children.What I read was that parents are choosing different paths . That

is their right . Less invasive . more invasive , there's a whole

spectrum of interventions and each decided what is best for their

child. I can't believe any parent would do that!!! I am

friendly with the mother of a 39 year old man with ds who was determined

he would learn to swim this year and guess what ?? He

did !!! We are sooo lucky ( yes lucky!!!) that our kids have

DS because DS is amazing in the fact that our kids can

learn right up until the day they die ( in very old age we hope) .

Yes its tiring sometimes but I don't believe people have given up hope of

improving things for their kids.

God grant me the serenity

to accept the things

I cannot change,

the courage to change the things I can,

and the wisdom to know the difference.

I too love this prayer , it

gives me the courage to try to change the things I can for my

son AND accept the things I cant !!!! I do walk in their shoes my

son has other issue that complicate his downs and hey just

downs on its own can be no picnic either !! Lord knows we are all

in this together. That's why we are on this list.

-----

Original Message -----

From: Keener

To: DownSyndromeInfoExchange

Sent: Wednesday, July 09, 2008 6:25 PM

Subject: Re: [DownSyndromeInfoExchange]

Interesting newsletter

Excuse me?! What you are saying here and what this newsletter

article are saying are two entirely different things! The 10 yr. old

girl with autism was not their daughter; it sounds like they were probably

providing respite care for her for a few days from time to time. The

article has nothing at all to do with supplements or medications... the

child's parents may well be leaving no stone unturned to try to find

something that will enable her to live a bit less at odds with the

world. NEVERTHELESS, " every

day is a struggle to adapt to her significant brain disconnect "

and " no matter

what we do it seems like this bundle of mischief will never be cured " !

There are moms on this list with children with dual diagnosis of DS and

autism, DS and OCD, or even just DS complicated with so many other

physical problems that the development of the child has been not just

delayed but stopped altogether! Until we have walked in their shoes,

we cannot judge. They see no hope of improving things for their

child because their hopes have been dashed again and again. They have

come to a place of acceptance of the fact that their child is probably

never going to " get better " , and they are choosing to still see the

silver lining in the cloud, to focus on just loving on the child

and delighting in the beauty and uniqueness that God has placed

within. PLEASE,

let's all encourage and support them!!!

It's like the Serenity Prayer:

God grant me the serenity

to accept the things

I cannot change,

the courage to change the things I can,

and the wisdom to know the difference.

May the LORD bless

each one of you and keep you!

May the LORD make

HIS face to shine upon you!

May the LORD give

you HIS PEACE!

(one and only wife to Fred; mom to Kari, Melody, Faith, Heidi, Isaac,

Josiah, , Alana, and ! Yes, they're all ours!)

Is. 40:31 " They that wait upon the Lord shall renew

their strength; they shall mount up with wings as eagles, they shall run and

not be weary, they shall walk and not faint. "

From: Carol in IL

Subject: Re: [DownSyndromeInfoExchange] Interesting newsletter

To: DownSyndromeInfoExchange

Date: Wednesday, July 9, 2008, 10:40 AM

First off, please read this with a calm

tone, no anger, no sarcasm. If you were sitting here with me, that would be

my demeanor. :-)

All types of adversity are used by God to teach us. It says so in the Bible.

It also says that we are to love one another and be willing to lay down our

lives, not be willing to let others lay their's down for *our* benefit. I

think this is the height of Christian hypocrisy to willingly deny

treatment to another human being for our own sanctification.

I learned many lessons in trust, hope and perseverance in dealing with

's heart. I have heard many parents say this as well on other

lists that are just for heart defects, but not one of us would entertain the

notion that we should allow it to go on in order for us to have more personal

growth opportunities. ack...

Nor would anyone suggest a person with bi-polor get off their meds and suffer

so others could be afforded the chance to be better sanctified through their

suffering. Nor would I encourage my teens to continue on in their, at times,

EXTREMELY, sanctifying behavior! ;-)

It makes no sense at all. And truly, this is very un-Christian like, and

selfish.

The only benifits people are touting to with hold medical treatment for

people with DD is for THEIR well being !!!

I undertstand this, I honestly love her as she is, I enjoy being part of the

DS community, I enjoy all the insights she affords me in this life, I owe her

a great debt for all the lessons she has taught me. I really believe that she

will be first in heaven because of this sacrifice on *her* part. But for me

to deny her a life just because it's going to be painful for me???

God forbid. I think that would be a sin.

Remember... happy tones.. smiley faces.... just talking and adding my

perspective to the mix. :-)

Carol

in IL

AIM

doihavtasay1 GigaTribe doihavtasay

Mom to seven including

, 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and

DS.

My

problem is not how I look. It's how you see me.

Join our Down Syndrome

information group -

http://health. groups.yahoo.

com/group/ DownSyndromeInfo Exchange/

Listen to oldest dd's

music http://www.myspace. com/vennamusic

10)DS

July 9, 2008