Re: question

[Guest guest]

Hi Suzie,

LOL, no it's not a regular peanut, its made from the same material a therapy

ball is made from except it is in the shape of a peanut. love, Vi

[Guest guest]

You don't sound a downer. This is a list to express your feelings, learn and

share any information. We're all on this list for a reason or another. We're

going to give you some advice or some predications on what to expect. . well

I hope that is. I wish I could give you advice but I don't know what the

exact reactions to that would be. . I've been watching my neighbor's kid

with autism for 3 years now- well now it's rarely that I watch him.

rebecca

Merry Christmas. Happy Holidays, Y'all!!

question

> not to be a downer, but i find it totally depressing that my son has now

been

> diagnosed with mild autism as well as Down syndrome. after all the work

we

> did to come to terms with Down syndrome, and truly we learned to embrace

our

> son's Down syndrome, we now are faced with something bigger and more

difficult.

> anybody else? all the books on Down syndrome and families were very

> reassuring. i'm having a tough time finding the silver linings, so to

speak, of

> autism and a way of coping with a more seriously disabled child.

>

> thanks.

>

>

>

[Guest guest]

This is understandable when this feeling occurs. I've too experience

this so it is alright to share this with us and this group have been

comforting when this happen. They have been a great support. It is a

challenge to learn of another dx when just adapting with the first

dx. Please do not hestitate on asking or sharing anything, we

understand where you're coming from. I'm just catching up reading my

messages and still feel so drained from my personal issues as I wish

I could have some comforting words for you which I can't at this

time but know that you are not alone.

Hugs!

Irma,15,Ds/ASD

> not to be a downer, but i find it totally depressing that my son

has now been

> diagnosed with mild autism as well as Down syndrome. after all

the work we

> did to come to terms with Down syndrome, and truly we learned to

embrace our

> son's Down syndrome, we now are faced with something bigger and

more difficult.

> anybody else? all the books on Down syndrome and families were

very

> reassuring. i'm having a tough time finding the silver linings,

so to speak, of

> autism and a way of coping with a more seriously disabled child.

>

> thanks.

>

>

>

[Guest guest]

Hi Pat

(I'm assuming your name might be " Pat " from your email address. If it

isn't, forgive me!)

To be equally honest with you, it would disturb me greatly if people were

overjoyed when they learned their child had a dual diagnosis of any kind,

including Down syndrome and autism. I can't say I was overjoyed with down

syndrome, but I wasn't devastated. I had time before Andy was born to deal

with a lot of it. But the autism piece...it's a little harder.

Most of us are relieved to learn that we aren't losing our minds when we

learn of our child's diagnosis. For me, Andy was developing so much

differently from " typical " Down syndrome that I couldn't figure out how to

go forward. The additional label meant that I wasn't losing my mind and

gave me direction regarding other teaching strategies that might work for

him. In the end, it was helpful information that changed our lives for the

better.

But that doesn't mean it was *welcome* information. Anything that was going

to be helpful was, of course, welcome, but knowing your child all of a

sudden fits in the category of " severe disability that challenges the

system " is hardly comforting. But that's who Andy is to political people.

To me, Andy is my beautiful second child. He has the most unique way of

showing his love and joy--different from the children wiht Down syndrome

who are his own age. All the lessons you learn about having a child with

down syndrome (looking at life through different lenses, learning to accept

differences, learning about tolerance, seeing joy in a different way, etc)

are even more poignant when your child has a dual diagnosis. It's not easy.

In fact, I think I scare people who have kids with Down syndrome only when

I'm bluntly honest about what each day entails for me. but underneath all

that hard stuff is my precious little boy who loves me, his father, and his

brother like no one else in the world. It has been a choice for me to focus

on Andys abilities--what he does well, how he learns, his character--rather

than his inabilities. And to be honest, it is that strategy that gets me

through even the most difficult of days. Because no matter what

happens--whether he pulls wads of hair out of my head or scratches my face

or does the happy dance up and down the street for 5 minutes when we bring

the Xmas tree home--inside is the child I love with all of my heart.

You're not alone. It's safe to whine, moan, groan, and cry here. That's why

this list is here. It is also safe and important to ask questions that lead

you to answers to improve life. This is one of the most talented,

supportive groups of people I've encountered in my 15 years of being

invovled with " Down syndrome. "

Go give your child a hug and feel the hug back. He/she is hugging you for

all of us.

Take care,

Joan

Mother of Andy (15) who has Down syndrome, autism, and is nonverbal and

(17) who is doing his college essays....I hope.

At 09:07 PM 12/26/2003 -0500, you wrote:

>not to be a downer, but i find it totally depressing that my son has now been

>diagnosed with mild autism as well as Down syndrome. after all the work we

>did to come to terms with Down syndrome, and truly we learned to embrace our

>son's Down syndrome, we now are faced with something bigger and more

>difficult.

>anybody else? all the books on Down syndrome and families were very

>reassuring. i'm having a tough time finding the silver linings, so to

>speak, of

>autism and a way of coping with a more seriously disabled child.

>

>thanks.

>

>

>

[Guest guest]

Hi,

When my daughter was diagnosed with autism/PDD at 12 yo, I put on this

brave front to the world, like nothing had changed. But inside I was having

the same feelings of grief that I had when she was born with DS. There is no

doubt about it, it is really depressing. It is sad. It¹s one more degree

of separation between our children and typical children.

But in reality, the only thing that changed is the label. I¹m not dealing

with a more seriously disabled child. She is still the same child and I am

still the same parent. I still love her with all my heart. The difference

is that now I have more information, which is a good thing because the

diagnosis has helped me understand her behavior and it helped me develop new

strategies that have really helped her. I have a happier and higher

functioning child than I had before she was diagnosed.

You don¹t have to look for a silver lining right now. It will come to you

when you least expect it. It¹s not fair that our kids should have both DS

and ASD. It¹s up there at the top of the unfairness scale. I get a lot of

comfort from this group by just knowing that I¹m not alone in this. None of

my family or friends really understand like the parents in this group do.

In the past year, I have loved the support and helpful information given so

freely by all the caring members of this group. That in itself has been a

silver lining.

Good luck to you,

Therese Mom to , 13 yo

> not to be a downer, but i find it totally depressing that my son has now been

> diagnosed with mild autism as well as Down syndrome. after all the work we

> did to come to terms with Down syndrome, and truly we learned to embrace our

> son's Down syndrome, we now are faced with something bigger and more

> difficult.

> anybody else? all the books on Down syndrome and families were very

> reassuring. i'm having a tough time finding the silver linings, so to speak,

> of

> autism and a way of coping with a more seriously disabled child.

>

> thanks.

>

>

>

[Guest guest]

I have a question for all of you, has your child established a hand

preference yet? My son will be 12 in May and still switches, his OT wants to

make him

use his right, I don't think it's a good idea to force a prefrence ~curious

what all of you think, and what your experciences have been , I read something

somewhere where a study was down and a large percent. of children with down

syndrome either switched or prefered thier left hand. thanks in advance

Vi Mom to Tammy (19) Tania (17), and 11 DS, PDD(ons)

[Guest guest]

hi everyone,

my sister was driving and saw someone with a license plate frame that said "enjoy wildlife raise multiples" . does anyone know where i can buy one of these?

i hope everyone had a good 4th of july,

julie

mom to taylor 11, ally, brittany, and james (ds) 5

[Guest guest]

Though not a license plate cover, I remember seeing this in Twins magazine, which I got the first year. I found it on their site:

http://www.twinsmagazine.com/product21.html

http://twinsmag.securesites.net/store/art.html

And for my niece's 16th birthday, I got her a personalized license plate cover for only about $18. You can have them print anything you want on it! Here is the link for that.

http://www.engravenet.com/frame_main.htm

Enjoy!

Casey, mom to (DS) and , 5

[Guest guest]

no more likely that someone changed their email and didn't notify the

group manager.

Carol

Trishasmom

She isn't typical, She's Trisha!

If you always do what you always did, you'll always get what you've always

gotten.

[Guest guest]

if a member changes their email address and doesn't notify the group manager

then it will bounce and you will get the delivery notice failure. It could

also be that someone signed up under a false email address and that would

also generate the delivery notice failure.

Carol

Trishasmom

She isn't typical, She's Trisha!

If you always do what you always did, you'll always get what you've always

gotten.

[Guest guest]

Hi Carol,

I had not realized it coming from the list. I have been receiving the

same message and just deleting it. I was afraid to open the attachment,

even though it says Delivery Status Notification.

Interesting, hope this gets resolves.

Happy New Years!

Lots of hugs!

Irma

[Guest guest]

Hey I got a few of those too Carol, very strange.

Maybe it's some time of Spam?

Csvillars@... wrote:

Everytime I send an email to DS-Autism, I get a notice that

_blubaughyboldi@..._ (mailto:blubaughyboldi@...) could not be

delivered. Anyone

else getting this?

Carol

Trishasmom

She isn't typical, She's Trisha!

If you always do what you always did, you'll always get what you've always

gotten.

[Guest guest]

I have been getting similar stuff on my website. I think it is spam.

At 01:27 PM 1/2/2006, you wrote:

>Hi Carol,

>I had not realized it coming from the list. I have been receiving the

>same message and just deleting it. I was afraid to open the attachment,

>even though it says Delivery Status Notification.

>

>Interesting, hope this gets resolves.

>

>Happy New Years!

>

>Lots of hugs!

>

>Irma

>

>

>

>

>

>

>

>--------------------------------------------------

>Checkout our homepage for information, bookmarks, and photos

>of our kids. Share favorite bookmarks, ideas, and other information by

>including them. Don't forget, messages are a permanent record of the

>archives for our list.

><http://groups.yahoo.com/group/>http://groups.yahoo.com/group/ds-autis\

m

>--------------------------------------------

>

>

>

>

[Guest guest]

I just got that notice when I posted this comment. First time I have

gotten it on the list.

At 01:43 PM 1/2/2006, you wrote:

>I have been getting similar stuff on my website. I think it is spam.

>

>At 01:27 PM 1/2/2006, you wrote:

> >Hi Carol,

> >I had not realized it coming from the list. I have been receiving the

> >same message and just deleting it. I was afraid to open the attachment,

> >even though it says Delivery Status Notification.

> >

> >Interesting, hope this gets resolves.

> >

> >Happy New Years!

> >

> >Lots of hugs!

> >

> >Irma

> >

> >

> >

> >

> >

> >

> >

> >--------------------------------------------------

> >Checkout our homepage for information, bookmarks, and photos

> >of our kids. Share favorite bookmarks, ideas, and other information by

> >including them. Don't forget, messages are a permanent record of the

> >archives for our list.

> ><<http://groups.yahoo.com/group/>http://groups.yahoo.com/group/d

> s-autism>http://groups.yahoo.com/group/

> >--------------------------------------------

> >

> >

> >

> >

[Guest guest]

I have 5 children who have Down syndrome. The oldest Andy, is 25. He had an AV

canal repair at 14 mo and after that he had many signs of ASD. Flapping,lining

up toys(not " playing " with them in a typical manner) Being very pset at changes

in schedule, or being asked to do something different. Not really mixing with

kids. The good news is that he is still very cuddly with us..especially if he

initiates it. He will usually hug back even if we start. Our daughter Kate is

just 14 and JUST getting an ASD diagnosis. I have suspected for a long time her

being on this spectrum. She is in 7th grade and I think in some ways it

actually helps her! She reads music and plays the clarinet in band. She is very

visual. She dances and it helps her to focus and remember the steps. If left

unattended she would sit in her room and " twirl " a piece of cloth all day....and

not come down to eat or drink. Sometimes she is angry when we interupt her

twirling.She is also very affectionate on her own

terms. The other 3 kids are " typical " kids who have Down syndrome...if there is

such a thing.Brigid 3333 From: Mitch0519@... [mailto:

Mitch0519@...]To: @...: Sun, 8 Jan 2006 03:12:14

ESTSubject: questionAfter only being in this group for a few months

and reading your post, it startles me. I see so many things in Adam that lead

me to believe he may have PDD. But,, my family finds many reasons to dismiss

adams behavior, such as he's getting older, he's just a boy, even he that he is

still a baby, or all baby's go through that phase. They make me second guess

myself. But Adam is doing so many of the things that are brought up on this

group. I am scared to lose all the love and cuddling Adam does,, Do any of you

guys that have children with Autism or PDD still have affectionate behavior?

At this point even his dr is many excuses for it,,, but Monday

we finally get to see a genetics and im hoping she will help in figuring out if

adam is just going through phases.

[Non-text portions of this message have been

removed]--------------------------------------------------Checkout our

homepage for information, bookmarks, and photos of our kids. Share

favorite bookmarks, ideas, and other information by including them. Don't

forget, messages are a permanent record of the archives for our list.

http://groups.yahoo.com/group/-----------------------------------------\

---

[Guest guest]

: If you are concerned, I would suggest you take Adam to see a Dev.

Ped.. Where do you live?

Liz-Mom to Tori 5 1/2 yr.

question

> After only being in this group for a few months and reading your post, it

> startles me. I see so many things in Adam that lead me to believe he may

> have

> PDD. But,, my family finds many reasons to dismiss adams behavior, such as

> he's

> getting older, he's just a boy, even he that he is still a baby, or all

> baby's go through that phase. They make me second guess myself. But Adam

> is

> doing so many of the things that are brought up on this group. I am

> scared to

> lose all the love and cuddling Adam does,, Do any of you guys that have

> children with Autism or PDD still have affectionate behavior?

>

> At this point even his dr is many excuses for it,,, but Monday we finally

> get to see a genetics and im hoping she will help in figuring out if adam

> is

> just going through phases.

>

>

>

>

>

[Guest guest]

, my son , never lost his loving ways, he is 8 now and

still affectionate, maybe some of this is due to needing the stong

hugs but not all cause he will give us kisses now!!! not to worry,

take care and let us know what happens, God Bless you, Dawn

>

> After only being in this group for a few months and reading your

post, it

> startles me. I see so many things in Adam that lead me to believe

he may have

> PDD. But,, my family finds many reasons to dismiss adams behavior,

such as he's

> getting older, he's just a boy, even he that he is still a baby,

or all

> baby's go through that phase. They make me second guess myself.

But Adam is

> doing so many of the things that are brought up on this group. I

am scared to

> lose all the love and cuddling Adam does,, Do any of you guys

that have

> children with Autism or PDD still have affectionate behavior?

>

> At this point even his dr is many excuses for it,,, but Monday we

finally

> get to see a genetics and im hoping she will help in figuring out

if adam is

> just going through phases.

>

>

>

>

>

[Guest guest]

the italian for ant is formiche "One bottle of formula is enough to change a baby’s gut dramatically, and it takes two weeks of breastfeeding to return the gut back to normal. (Personal communication, Dr  Reisinger) How can this happen? E Coli is the main culprit. This bacteria is a putrifactive protein loving bacteria. The protein content of human breast milk is lower than in any other mammal, and the protein content of formula or any other milk supplement has a direct influence on the numbers of E Coli in the gut . Not only does the acid gut and very low protein content of breastmilk provide a more hostile environment for E Coli, but breastmilk also contain neutralising factors against E Coli."