standing

[Guest guest]

GREAT NEWS GAIL, SO HAPPY TO HEAR OF TARA'S PROGRESS.

> Also, does anyone know when or at what age can you tell on a baby with

> Ds if he/she will be " high functioning " ?

I would hold up on that question there. I certainly always catch myself

thinking about it too but my suggestion would be to read page 188 of the

" Circle of Friends " book. The author strongly believes that there is no

such thing as " high/low functioning " in ds (provided the child is healthy)

and although I catch myself questioning this statement, she does come up

with some very valid points. And IF there is such a thing as high/low

functioning in ds I would say that 12 months is way too young of a age to

make a prediction like that on. I would LIKE to believe that a child with

ds that doesn't walk/talk until 4-5 years could still make as much progress

as a child with ds that walked/talked at 2-3 years.

JMO

[Guest guest]

GAIL, Alright for TARA.... go big girl!!!!

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

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standing

>Good evening friends!

>walked in to the twins bedroom this morning, was standing in his

>crib as usual waiting for me to get him, so was TARA! She was STANDING

>too in her crib!!!!!! WOW is this unusal, early for babies with low

>muscle tone??? She does pull to a kneeling position, but never a

>standing.

>Also, does anyone know when or at what age can you tell on a baby with

>Ds if he/she will be " high functioning " ?

>When Tara does something like this, and the PT is soo excited about her

>progress, it gives me a little window of a feeling like " hey, things will

>be OK, Tara will be OK " , but then I rethink, Tara WILL have mental

>disabilities, developmental disabilities, different

>schools.....etc....I don't give myself a moment of happieness,

>contempment.........can't make heads or tails of this new life I've been

>given.....................

> Gail,..........Bobby 6, Jillian 3 1/2, and Tara{ds} 1

>

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

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>http://DSyndrome.com/Multiples

>

>

[Guest guest]

Gail, that is so cool that Tara pulled up to a standing postion! Gosh

was 3yrs before he did. I remember the first time he did I grabed

every pillow in the house and surrounded him with them because I was so

scared he would fall. He never did. He went straight to lock knee!

Give your self moments of happiness! You will find that because she may

learn a little slower or do things a little different that they are all

the more special and exciting! Everytime I see notice something

(the lights on the schoolbus) or turn when I call his name,learning to

pucker when he kisses and yesterday finally saying mama(his first word!)

I just melt inside. I love him so much and never dreamed how happy I

could be. Every year gets easier, Sometimes it is hard when they have a

twin, You try not to compare but it's only natural. I also have another

set of twins that are 15 so I know the bond they have,

but and Tyler also do. It might not be the same but Tyler (as he

says) I love . As far as making heads or tails of the life you've

been given...no need, god gave a special little girl to a very special

person. What more is there to say? Have a wonderful day!

Kelli.... wife of Greg, mother to

,Greg,April,Ash,(ds)and Tyler(age4), friend of Dena,daughter

to Lynda, sister to Viki, Trasi,Rick and Jon. The End

[Guest guest]

Good for Tara and for you too because that brings you happiness. I can't

give you a lot of advise Iam as new as you on this but I believe Tara is a

lucky baby having you as her mom and having a beautiful family who loves her

and cares a lot about her. Take things slow and live one day at the time.

Mabel, mom to carolina, Cristian, a-ds 1year old

>From: GVanHouten <rjvh@...>

>Reply-Multiples-DSegroups

>Multiples-DSonelist

>Subject: standing

>Date: Wed, 12 Apr 2000 21:37:23 -0400

>

>Good evening friends!

>walked in to the twins bedroom this morning, was standing in his

>crib as usual waiting for me to get him, so was TARA! She was STANDING

>too in her crib!!!!!! WOW is this unusal, early for babies with low

>muscle tone??? She does pull to a kneeling position, but never a

>standing.

>Also, does anyone know when or at what age can you tell on a baby with

>Ds if he/she will be " high functioning " ?

>When Tara does something like this, and the PT is soo excited about her

>progress, it gives me a little window of a feeling like " hey, things will

>be OK, Tara will be OK " , but then I rethink, Tara WILL have mental

>disabilities, developmental disabilities, different

>schools.....etc....I don't give myself a moment of happieness,

>contempment.........can't make heads or tails of this new life I've been

>given.....................

> Gail,..........Bobby 6, Jillian 3 1/2, and Tara{ds} 1

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Gail: I completely agree with Pam. Couldn't say it

any better!

I completely understand where you're coming from, but

I have learned to celebrate all the boy's

accomplishments, big and small, and take delight in

how proud they are of themselves as they learn/do

something new.

In the first year or so, I would stress out because

they weren't accomplishing goals anywhere near their

peers. I had to really remind myself that they were

13.5 weeks premature and that was going to impact how

and when they did something. Once I quit looking at

developmental charts and obsessing how far " behind "

they were, is when I learned just to celebrate the

moment.

To steal a phrase from " AA " , just try to take things

" One Day at a Time " .

As a side note, I wanted to tell you about their

latest fascination on TV, " Who Want's To be a

Millionaire " . When it came on tv the other night,

they were still in their highchairs eating and they

heard the intro music on the tv in the other room and

they 'bout fell out of their chairs trying to crane

their necks to see around the corner. I cleaned them

up and let 'em loose and they made a b-line for the

tv, plopped themselves in front of it and proceeded to

be mesmerized and clap as appropriate. It is so

funny! They didn't move until it was over. I think

that teletubbies may take a back-seat to Regis! Mike

said " let them watch it, maybe they are learning

something! " . I think I need to tape them watching the

show and send it to Regis.

Judi-Mom to Sam & , 3, Identical Twins

--- Pam Houser <p_houser37@...> wrote:

> Gail,

>

> I think this is early for her to be standing and a

> little on the normal side. My Hannah didn't stand

> till

> she was about 2 1/2 and didn't walk till 3 1/2 and

> started pulling up at 3 1/2 and still is not

> walking on her own and is almost 5. What else does

> Tara do?!!! She is a real go getter. Mine was 3

> years

> old before they could use a spoon! I think you have

> a

> genius on your hands! lol..

>

> There will be things that she will pick up rather

> " on

> time " and come in threes. Then there will be times

> when it seems like she will never learn how to do

> anything. She will also put more concentration on

> one

> thing at a time. Like my Hannah she does more

> phsical

> things(she walks anf gets into everything) but does

> not talk very well and (does not walk) but can

> verbalize alot more than Hannah.

>

> You will find yourself wondering all the time how

> " smart " she will be. But just remember she will

> learn

> how to do all these things it will just take longer

> is

> all. I know you are tired of hearing that. I was.

> One

> day you will be happy with it all.I promise it will

> come. Every little thing and new thing she does will

> be great. One thing that might help alittle is when

> your other child does something new or whatever is

> praise him alot in front of Tara that way she will

> think wow I want to do that so Mommy will do that to

> me. After a few times she will get the idea of

> it!!

>

>

> Anyway Good Going Tara keep up the good work!!!

>

> Pam mom to Hannah and identicals age 4. And

> Josh 18, Dusty 13.

>

> __________________________________________________

>

[Guest guest]

hectichouse@... wrote:

>

> Gail, that is so cool that Tara pulled up to a standing postion! Gosh

> was 3yrs before he did. I remember the first time he did I grabed

> every pillow in the house and surrounded him with them because I was so

> scared he would fall. He never did. He went straight to lock knee!

> Give your self moments of happiness! You will find that because she may

> learn a little slower or do things a little different that they are all

> the more special and exciting! Everytime I see notice something

> (the lights on the schoolbus) or turn when I call his name,learning to

> pucker when he kisses and yesterday finally saying mama(his first word!)

> I just melt inside. I love him so much and never dreamed how happy I

> could be. Every year gets easier, Sometimes it is hard when they have a

> twin, You try not to compare but it's only natural. I also have another

> set of twins that are 15 so I know the bond they have,

> but and Tyler also do. It might not be the same but Tyler (as he

> says) I love . As far as making heads or tails of the life you've

> been given...no need, god gave a special little girl to a very special

> person. What more is there to say? Have a wonderful day!

>

> Kelli.... wife of Greg, mother to

> ,Greg,April,Ash,(ds)and Tyler(age4), friend of Dena,daughter

> to Lynda, sister to Viki, Trasi,Rick and Jon. The End

>

Kelli, you are too kind, thanks for your nice words!

Gail.......Bobby 6, Jillian 3 1/2, and Tara{ds} 1

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

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> additional 4 weeks at this low introductory rate.

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>

> http://DSyndrome.com/Multiples

[Guest guest]

, getting back for a moment, about " no iron " . What do you feed

at breakfast, what is his diet like getting around no iron? I

can't find a soy milk, {which is what Tara is drinking in her

bottle}that contains no iron. I'm terrible about thinking about what to

serve as far as dinners and food is concerned. I'm one of those's who

would rather clean than cook!

Gail........Bobby 6, Jillian 3 1/2, and Tara{ds} 1

hope this message doesn't come up twice again!!!!!!!!!!!!!!!!

>

> GREAT NEWS GAIL, SO HAPPY TO HEAR OF TARA'S PROGRESS.

>

> > Also, does anyone know when or at what age can you tell on a baby with

> > Ds if he/she will be " high functioning " ?

>

> I would hold up on that question there. I certainly always catch myself

> thinking about it too but my suggestion would be to read page 188 of the

> " Circle of Friends " book. The author strongly believes that there is no

> such thing as " high/low functioning " in ds (provided the child is healthy)

> and although I catch myself questioning this statement, she does come up

> with some very valid points. And IF there is such a thing as high/low

> functioning in ds I would say that 12 months is way too young of a age to

> make a prediction like that on. I would LIKE to believe that a child with

> ds that doesn't walk/talk until 4-5 years could still make as much progress

> as a child with ds that walked/talked at 2-3 years.

>

> JMO

>

>

>

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> http://DSyndrome.com/Multiples

[Guest guest]

I can totally relate......

Skylar has gross motor delays but sits like its no bodies business now

& her cognitive has always been age app.....which to me means her brain

is working where it should be....She just makes life complete for us being

the baby

(even though she's a twin,shes still the baby...born last!!)I love her to

pieces,,,even though she's a Daddy's girl!! LOL

Amber : )

[Guest guest]

I think we would all like to think of our children as " high "

functioning...to do otherwise would be sorta strange. I do think however,

that as with all kids, certain facets of our children are stronger than

others. We all have strengths and weaknesses. I can't draw anything but I

can write anything. I can't sing a note but I could probably write a song.

Maggie isn't walking yet (17 months) but she can string beads and when she

finishes, she puts it around her neck, like it is her necklace. Do you all

get what I mean? Maybe her gross motor skills aren't that great but her

fine motor skills are supreme.

Re: standing

GREAT NEWS GAIL, SO HAPPY TO HEAR OF TARA'S PROGRESS.

> Also, does anyone know when or at what age can you tell on a baby with

> Ds if he/she will be " high functioning " ?

I would hold up on that question there. I certainly always catch myself

thinking about it too but my suggestion would be to read page 188 of the

" Circle of Friends " book. The author strongly believes that there is no

such thing as " high/low functioning " in ds (provided the child is healthy)

and although I catch myself questioning this statement, she does come up

with some very valid points. And IF there is such a thing as high/low

functioning in ds I would say that 12 months is way too young of a age to

make a prediction like that on. I would LIKE to believe that a child with

ds that doesn't walk/talk until 4-5 years could still make as much progress

as a child with ds that walked/talked at 2-3 years.

JMO

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

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[Guest guest]

Fantastic Gail - I would have loved to have seen the look on your face!!

Carolyn

Mum To on(8), (6 1/2), Emma (4)ds and Nicki (nearly 3)ds

[Guest guest]

In a message dated 7/19/02 3:10:56 PM Pacific Daylight Time,

janisgonzales@... writes:

>

>

> Hi everyone,

> Did anyone have trouble getting their child with DS to stand? My

> baby (10 1/2 mos) is doing great in other ways and the doctors and

> therapists don't think her muscle tone is very low (she rolled both

> ways at 4 mos, breast fed since birth, ate solid food since 4 mos

> without any problems, sat well at 9 mos) but she does not want to

> bear weight on her feet. We have been trying to start her on

> treadmill training but can't because she picks up her legs.

> Sometimes we can trick her into standing for a minute by putting her

> next to the couch or table with toys on it which distracts her, but

> it usually lasts less than a minute and she buckles her legs or picks

> them up (if we are holding her) and won't put them down again. Our

> EI therapist wants to just wait, but I emailed the doctor who did the

> treadmill research and he strongly suggested not waiting. I have her

> scheduled to see another PT in Albuquerque next week (we live in

> Santa Fe), so we will see what they say. Any one else go through

> this? Any ideas? Thanks in advance!

> Janis (Mom of 3 including Cariana with DS)

>

There is another issue besides the muscle tone... and that is the laxity in

the ligaments. Our PT recommended finding sneakers with " high top " ankle

supports, which we did. The infant-toddler program she was in also lent us

an infant walker to practice with... it was so cute! Her PT also did drills

with my daughter.... the PT would sit on a stool with wheels, and make my

daughter stand in fron to her holding her hands on the stool. Then the

therapist would slowly walk backwards, forcing my daughter to walk. My

daughter whined the whole way but the therapist was no nonsense about it and

kept her doing it.

My daughter couldn't actually walk alone until 2. She had very strong muscle

tone... rolling over at 5 weeks, sitting around 7 months. But bearing weight

on those lax ligaments is a whole 'nother story.

BTW - you should she her now (at 10), especially her upper body strength.

Her favorite activity is to flip herself upside down on the trapeze bar and

swing from her knees!

- Becky

[Guest guest]

Hi,

didnt walk till 2 years, 2 months old. so of course she wasnt

standing. I tried to get her to stand to no avail. Give your daughter time-

shes prob not ready. Soon shell walk, then run do a modified skip, jump,

dance and climb.

Try not to stress over it - it will happen on her own time.

~ Mom to 11 DS and Diabetes Type 1 and 8 NY

[Guest guest]

Hi Janis,

Another thing to look at is the sensitivity issue. Some children with Down

syndrome have " touchy " feet. I had read about this in a book when was

first born. So while I nursed him I would massage the bottoms of his feet so

he would get used to the pressure there. It helped immensly and he never had a

sensitivity problem on his feet.

Will Cariana allow you to massage the bottom of her feet? Maybe rubbing the

bottom of her feet with different textures will help too.

Roni

Mom to (5 DS) and his two older brothers.

[Guest guest]

I'd pay attention to the EI staff over this doctor. Pat Winders is THE expert

in gross motor skills and children with DS -- have you read her book? If your

daughter just started sitting up at 9 months, then she is not ready to stand

alone. sat up at 7 months and pulled himself up to a standing position

at 12 months. He still did not take his first steps until 22 months. I don't

know who this doctor is with research in treadmill work, but it doesn't sound

kosher to me. Gross motor therapy should be natural and fun. Your couch is her

best piece of PT equipment. Try taking the cushions off, too when she is ready.

standing

Hi everyone,

Did anyone have trouble getting their child with DS to stand? My

baby (10 1/2 mos) is doing great in other ways and the doctors and

therapists don't think her muscle tone is very low (she rolled both

ways at 4 mos, breast fed since birth, ate solid food since 4 mos

without any problems, sat well at 9 mos) but she does not want to

bear weight on her feet. We have been trying to start her on

treadmill training but can't because she picks up her legs.

Sometimes we can trick her into standing for a minute by putting her

next to the couch or table with toys on it which distracts her, but

it usually lasts less than a minute and she buckles her legs or picks

them up (if we are holding her) and won't put them down again. Our

EI therapist wants to just wait, but I emailed the doctor who did the

treadmill research and he strongly suggested not waiting. I have her

scheduled to see another PT in Albuquerque next week (we live in

Santa Fe), so we will see what they say. Any one else go through

this? Any ideas? Thanks in advance!

Janis (Mom of 3 including Cariana with DS)

[Guest guest]

In a message dated 7/19/02 5:11:38 PM Central Daylight Time,

janisgonzales@... writes:

> We have been trying to start her on

> treadmill training but can't because she picks up her legs.

> Sometimes we can trick her into standing for a minute by putting her

> next to the couch or table with toys on it which distracts her, but

> it usually lasts less than a minute and she buckles her legs or picks

> them up (if we are holding her) and won't put them down again. Our

> EI therapist wants to just wait, but I emailed the doctor who did the

> treadmill research and he strongly suggested not waiting

I see everyong else who answered mentioned the muscle/ligaments thing. I'll

give some different thoughts....

did this, but for her the reason was her heart. we had her checked by a

ped. (she was born in a small hospital without specilists and the 2 or 3 who

listened to her heart, didn't hear this murmer). She also had what in hind

sight were symptoms, sweating and tirerness. (live and learn)

She did walk the night the Twins won the world series in 1991, a month before

her 2nd birthday. mostly because she couldn't keep up with her cousins kids

running around my house. hehe.

So if it's really a problem and she has any other symptoms from personal

expericence I'd get a second medical opinion. If she doesn't have any other

sypmptoms that something could be physically wrong then just keep encouraging

her. Some kids to take some time getting around to walking and standing.

:-)

Joy

[Guest guest]

Thanks! You seem to really understand what I am saying. Others wrote saying

do not expect her to stand yet, but I am NOT expecting her to stand on her

own yet, it is just that she will not put any weight on her feet at all, even

when I hold her up. I hold her up and she picks her legs up in the air and

won't put them down. This is unusual from what I have been told and may need

some work. I have had her in the exersaucer for 5 mos now but you are right,

she mostly sits in it rather than stand with weight on her feet. I know she

will develop in her own time, I just want to make sure I help her in the

right way. BTW, I made a typo in the last letter, Cariana has been sitting

since 7 mos not 9. She is like Nikki, she LOVES to roll! Even though she can

crawl a little she prefers to roll all over!! It is SO cute! Thanks for

writing (and thanks to everyone else who wrote too, I really appreciate the

responses!)

Janis

[Guest guest]

In a message dated 7/19/2002 5:11:20 PM Central Standard Time,

janisgonzales@... writes:

> Our

> EI therapist wants to just wait, but I emailed the doctor who did the

> treadmill research and he strongly suggested not waiting.

HI

The treadmill study came out to late for Sara BUT I did put her on mine when

she was standing because she had an interest in it heehee Sara was standing

then but not walking. I think UT (medical university here) did a study too on

the treadmill and kids with low tone. They did recommend it for children who

could bare their weight. Ill look though all of my paper work and see if I

can find this study Oh I tried this treadmill stuff with my grandson when

he was younger and it did make his legs much stronger, he too was a late

walker like his Mom and his aunt Sara lol

Kathy mom to Sara 10 ............ Sara stood at a young age but walked very

late, much to blame on her vision though

[Guest guest]

Thank you very much; I will try this. Cariana does let me massage

her feet and I do play with her feet but haven't tried lots of

different textures. She doesn't mind having her feet touched so I

think she will like it. Thanks for the suggestion.

Janis

> Hi Janis,

> Another thing to look at is the sensitivity issue. Some children

with Down syndrome have " touchy " feet. I had read about this in a

book when was first born. So while I nursed him I would

massage the bottoms of his feet so he would get used to the pressure

there. It helped immensly and he never had a sensitivity problem on

his feet.

> Will Cariana allow you to massage the bottom of her feet? Maybe

rubbing the bottom of her feet with different textures will help too.

> Roni

> Mom to (5 DS) and his two older brothers.

>

>

>

[Guest guest]

In a message dated 7/20/2002 4:37:54 PM Eastern Daylight Time,

b4alltoday@... writes:

<< Oh I tried this treadmill stuff with my grandson when

he was younger and it did make his legs much stronger, he too was a late

walker like his Mom and his aunt Sara lol

>>

Walking in the sand is a great leg strengthener too!

Kathy, Liam's mom(4)

[Guest guest]

The treadmill experiment was supposed to help children

with ds walk with a better gait sooner. The article

can be found on the March of Dimes website.

http://www.modimes.org/AboutUs/242_701.htm

Bridget is 9 and we are starting to work on the

treadmill in PT to get a better gait and quieter walk.

Right now she walks with the ball of the ball of hte

foot hitting first.

It turns out the treadmill really has given mixed

reviews. I, too, would listen to my therapist.

Another thing to be concerned about is the neck for

alanto-axial problems. Refusing to weight bear can be

an indication of this as well as all the other stuff

mentioned.

Bridget walked alone at 27 months. She has lax

ligaments in her knees as well as fair muscle tone.

We used a playschool cart with a weighted handle and a

5 pound bag of sugar in the basket as a walker around

the house. When she could pick up the cart to turn

it, I took out the sugar and she made fast progress

towards walking alone.

mom to Bridget 9 ds in SC

__________________________________________________

[Guest guest]

In a message dated 7/22/02 9:30:43 PM Central Daylight Time, igloo@...

writes:

> we were not aware that miss shan did not have Hip Sockets and that was

> the cause of her " slowness " .

>

was slow walking too but we realized many years later that he

had pain in his hips most of his life, until he had surgeries on them at 15.

His were dislocated. There were many things he didn't want to do. And I

think now it contributed to his late walking.

Jessie, Mom to , 37 and the light of my life.

[Guest guest]

miss shan first sat on her own at 16 months

and her standing capabilities were VERY slow.

we were not aware that miss shan did not have Hip Sockets and that was

the cause of her " slowness " .

Many surgeries later ...my sweet pea has the sweetest hips, LOL...

but her standing capabilities are still not that great.

Every child is diff.....

[Guest guest]

I stood and cooked dinner tonight. Many different things. Overall

time standing was nearly an hour.

What can I do to avoid the pain and stiffness? Can't really take a

break. Anything I can do while I am standing that would help?

Kim in Minnesota

http://quiltmom05.blogspot.com/

http://web.mac.com/skinbike/Site/Welcome.html

http://community.webshots.com/user/quiltmom05