New to group

July 1, 2004

Why do you think he refuses to use it, ? I've not had much success

with students I've worked with and communication devices, either. One of

the big problems I had, which I KNOW isn't the case in your situation, is

the lack of carryover with families. Families only wanted it to be used at

school and I've always felt to be worthwhile and beneficial and a " voice "

for the child it needs to be used in all environments as much as possible.

Most (3 out of the 5) of the parents I worked with asked us to leave it at

school vs. traveling back and forth everyday and NEVER used it in the

summer. One family just told us to keep it at school over the summer and

another couldn't find theirs till a month after school started and it showed

up under a couch on their unused porch. Even in school the kids have been

reluctant to use it and I " m not sure why. We (Mac's IEP team) have

discussed the possibility of experimenting with a device for Mac since his

speech is still pretty unclear to anyone unfamiliar. We're all (but

especially me) torn on whether this is the right approach to take. He IS

talking, is interacting with people and I'm not sure whether a device would

help with his speech or slow down his progress in the way of speech. I

think a device can often be intimidating to other kids and also seen as a

toy to other kids--so that is another issue of educating his peers. Then I

also worry about my commitment to a device--would I be a good parent as far

as that goes...remembering to take it with us, remembering to make sure it

is charged up and has the appropriate vocab programmed, taking the time to

make sure he gets practice with it at home???? He communicates well here at

home and with me with him in public--he talks a LOT and will use signs

(which to me is great as it is readily available, nothing to remember to

take with you, no technology concerns, no batteries to worry about..) as

needed. I don't know which route to go. I do know if a device is a good

thing to try with him we'd better do it earlier than later as I'm sure, like

anything else, the longer you wait the harder it is to learn the system and

the more resistive he may be to it. How long has Maverick been using a

device?

Jill

Re: new to group

Hi,

My son, Maverick is 13 and uses a Vantage talker. I can set up anything he

wants on it, and once I show him where something is or where to make a

sentence, he can do it correctly with no problem. BUT, he can't build the

sentence on

his own, and he doesn't use it with others since no one really takes the

time

to listen to what he is trying to say.

This summer he goes to a program 2 mornings a week to work on using it in a

school setting, but still pretty much refuses to use it.

M.

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

......for a tree is recognized by its fruit.

3:33

July 18, 2004

Hi.....Sorry I haven't replied sooner, but I was on vacation.

We took Mav's talker on vacation. I kept it charged and I even made a

VACATION page for him with each activity that he did each day. He wouldn't even

look at it when we were around the relatives. In fact, he really had to be

pushed to sit down and use it with me, and I must say that in 2 1/2 weeks, the

only

time it was used (Other than the times I made him) was when I made him tell

me what he wanted at Burger King, then I left it on his table and his 8 yr old

brother started using the joke page. I would have it out wherever we

went...and tried to encourage him to use it,,,but no luck.

He had an Alpha talker in Kindergarten and 1st grade, but they (the school)

really resisted using it and I think he got a negative feeling from that. So,

we said we'll focus on sign and wait for the speech to come. It never

came....so then in 6th grade........we went to the Vantage.

M.

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

......for a tree is recognized by its fruit.

3:33

July 20, 2004

My bad kneecap will move about an inch (but I do have to use firm pressure). My

good one only half an inch. Here's a test: put your legs FLAT out in front of

you & make sure they're relaxed. Tighten the quads on the good knee, if you

have one, so you can see how the kneecap tracks -- does it move mainly straight

toward your body, or does it move somewhat laterally? Compare with the bad

knee. My bad knee moves noticeably more laterally than my good one. This is my

problem. This is what causes the kneecap to rub against the femur & wear away

the articular cartilage. If I use the quad machine (bent leg lift) w/o knee

tape (see below), my kneecap actually snaps out of the trochlea.

Since you're new here, I'll repeat my daily mantra: Have you tried knee tape

(McConnell taping)? If not, we can help you find out where to get it & how to

apply it. Or if you have a PT contact, AND they're experienced in kneecaps,

they can help you. I have to use knee tape in order to do quad strengthening

exercises or walk a significant distance (I use it on the treadmill). The

special tape is more or less sweatproof (not totally -- I have to do nonsweating

things first).

Surgically, you can have a lateral retinacular release and/or a medial -- I

forget now what they call it, but they shorten the medial retinaculum. I had

the LR done in '95 & it worked 100% and some people here have had it done

recently and are very happy with the results. Others haven't had such good

results.

Sometimes you can have knee pain that seems to come from one place when in fact

it's coming from somewhere else. I thought I had ITBS for years until I had an

MRI & it showed a meniscal tear. I finally got scoped (Jan. this year) & the

meniscal tear was pretty extensive. He removed about 2/3 of the lateral

meniscus and now I don't have THAT pain any more. I thought I'd have pain from

bone-on-bone (femur-on-tibia) after that, but I don't. Then again, I'm not

running or playing soccer.

What did they do in your scope? Just smooth out the CP? That didn't work for

me, although I used to know a woman it did work for. Depends on the person, I

guess. Or what else they do. My surgeon didn't do a lateral release this time

bec. my quads are weak. Wants me to strengthen them (esp. VMO) first & see if

that pulls the kneecap back where it's supposed to be.

Ann

new to group

Hello all, I`m a 50 year old male from NC. I`ve been dealing with

knee pain since 96. I`ve had both knees scoped. Been on Mobic,

Bextra, Celebrex, all the asprins etc...injections etc. I work for

Norfolk Southern and waiting occupational disability from the RR

Retirement board. Sometimes I feel so useless. To look at my knees

you`d think nothing was wrong. I feel some people maybe consider that

I just want an easy way out but the pain of work is unbearable.

Catching up on moving equipment, stairs, walking on rock

ground..etc.You can take your thumb and fore finger, grasp my patella

and move it back and forth about an inch...going back to Dr. Thursday

Does anyone else experience this?

September 21, 2004

There are several. Eve for one has popped in. The best bet is to go to zaplife.org and you will find several others.

Gail

New to group

Hello I am new to group and was wondering if there were many Australians using this service.Please visit the Zapper homepage athttp://www.ZapLife.org

September 21, 2004

Hi Gaylynn.

It is so great to hear that you are doing well. When we were

conversing back and forth a couple of years ago, you were not doing

well at all. Now here you are offering your help. IM so happy for

you.

How is Ross. Do you still have your summer house? E mail me.

> Hi,

>

> When I had my ICD implanted my husband used the Zapper file for

information and support. Eventually I had a heart transplant (18

months ago) and he doesn't use it as often so I miss out as I am not

as interested in computers. However I still keep in touch with a few

people by email or telephone in other States in Australia. I am

still involved in the Cardiomyopathy Association as once again I had

so much support from that group. I am now putting back a little

through my involvement in the Heart/Lung Transplant group as it is

the one area that I feel I have the most experience as it seems less

scientific. However I well remember the days of the ICD!

>

> Recently one of Australia's world famous surfers was on a TV

interview program (now living in the US) explaining his life with an

ICD and saying how he had no choice but to give up his iron man

events. He was probably one of the fittest people in Australia. It

was interesting to hear about his zap experiences.

>

> I am so grateful for the health services here. Didn't need to

worry about this until I turned 50 but sure do now!

>

> Good luck and please let me know if I can be of any help.

>

> Regards

>

> Gaylynn

>

> New to group

>

> Hello I am new to group and was wondering if there were many

> Australians using this service.

September 25, 2004

thank you for the welcom Joyce I have had my ICD for 2 and half years and do not know anyone else with one so this is a good place to talk and get information.Joyce <digntheview@...> wrote:

Hello

My name is Joyce, and I live in Calif. I am also new here, It has been very helpful for me, I have a ICD for two weeks, Welcome, and I have there is someone in you area...

New to group

Hello I am new to group and was wondering if there were many Australians using this service.Please visit the Zapper homepage athttp://www.ZapLife.org Please visit the Zapper homepage athttp://www.ZapLife.org

Find local movie times and trailers on Movies.

March 15, 2005

Hello Everyone,

I sure appreciate the warm responses to my questions. To answer Sherri's

questions, our daughter's hands don't have the classic single crease, but her

face is a bit flatter, her eyes have the DS " look " and her ears are set a bit

low. Her mouth is very small, thus her tongue shows (as if it's the tongue that

is too large). She is super flexible and makes us laugh at her amazing body

movements, but seriously in my heart I knew it meant she had poor muscle

tone. We suspected nothing at birth, but I did notice how small her mouth

cavity

was. The bowel movement was an issue immediately after birth, but then, the

doctors say that breast fed babies may go for days without a movement, and

that is " normal " . Normal or not, it didn't seem like a good situation to me,

and

when she did finally have the movement, it was a lot of work for her - that

made me wonder too. Like she had such poor muscle tone even in her colon. I

have friends who have family members with DS and they all believe that she is

also. Her situation doesn't seem as severe as some I've heard about. The

children I've known with DS are among the sweetest children I've ever known -

we

feel blessed to be entrusted with this little treasure of a child.

We plan to see a neurodevelopmentalist in April. I also am looking into

vitamin supplements made specifically for DS. Hopefully we can get a medical

diagnosis soon so that we can do everything possible to optimize this important

developmental time in her life.

mentioned audiological testing. I have not heard of this. What does

this actually test for?

I can't tell you enough how much I appreciate your help. Bless you ,

Jan and Sherri

Bless you all,

Wife to a wonderful husband and father, Mark

Mother to 8 beautiful children

March 15, 2005

Hello Everyone,

I sure appreciate the warm responses to my questions. To answer Sherri's

questions, our daughter's hands don't have the classic single crease, but her

face is a bit flatter, her eyes have the DS " look " and her ears are set a bit

low. Her mouth is very small, thus her tongue shows (as if it's the tongue that

is too large). She is super flexible and makes us laugh at her amazing body

movements, but seriously in my heart I knew it meant she had poor muscle

tone. We suspected nothing at birth, but I did notice how small her mouth

cavity

was. The bowel movement was an issue immediately after birth, but then, the

doctors say that breast fed babies may go for days without a movement, and

that is " normal " . Normal or not, it didn't seem like a good situation to me,

and

when she did finally have the movement, it was a lot of work for her - that

made me wonder too. Like she had such poor muscle tone even in her colon. I

have friends who have family members with DS and they all believe that she is

also. Her situation doesn't seem as severe as some I've heard about. The

children I've known with DS are among the sweetest children I've ever known -

we

feel blessed to be entrusted with this little treasure of a child.

We plan to see a neurodevelopmentalist in April. I also am looking into

vitamin supplements made specifically for DS. Hopefully we can get a medical

diagnosis soon so that we can do everything possible to optimize this important

developmental time in her life.

mentioned audiological testing. I have not heard of this. What does

this actually test for?

I can't tell you enough how much I appreciate your help. Bless you ,

Jan and Sherri

Bless you all,

Wife to a wonderful husband and father, Mark

Mother to 8 beautiful children

March 15, 2005

,

A pediatrician, developmental pediatrician or geneticist can order the blood

test. Really, any doctor can. I would definately have her tested - there

are other syndromes that resemble DS and it's important to know for sure

what if if anything she has. There are medical guidelines for children with

DS (at http://ds-health.com) and adjusted growth charts. She would also

qualify for early intervention (special ed for babies) - but from how you

described your family, you may not like the intense services some families

receive (which is perfectly OK - early intervention is often seen as early

interference and if I could do it again, I'd get rid of the teacher and just

have PT, OT and ST). If I could suggest one book right now, it would be the

gross motor skills and children with DS by Pat Winders. Then there is the

Communication book by Libby Kumin (for younger children) and I believe there

is one for OT and kids with DS. It sounds like your daughter could benefit

from Physical, Speech and Occupational Therapy right now. Your daughters

best teachers will be her older sibs, but therapy is critical to faciliate

their development! Anyway, those books are all available through

woodbinehouse.com or via amazon.com.

We have another parent here that uses oil for her child and swears by it.

If your child has a definate diagnosis, then you can search for a doctor to

treat your child yet respect the alternative therapies that you prefer. If

your child does have DS, I would highly recommend getting an audiological

eval in addition to the therapies.

I'm glad you found us - I look forward to hearing about all in your family.

, 's mom and List Owner

New to Group

>

> Hi,

>

> I'm , mother of 8 beautiful children. Our last is a sweet little

> girl (just turned 1 year) whom we suspect has DS. We have not had her

> tested, but she has some classic symptoms that confirm in our hearts

> that she is a special child with unique needs compared to our other

> children. I am thankful to find this discussion group. I hope you can

> help me answer some basic questions.

>

> As for symptoms, the worst problem is sluggish bowel function. She

> spent 8 months of her life going a good week between movements. I

> discovered an essential oil that has helped a lot. We rub the oil on

> her abdomen and bottoms of her feet - now movements are consistently

> every-other day. Otherwise, she is a sweet, happy little one-year old

> who looks and behaves like she's 6 months old. She crawls, but

> doesn't pull to stand. I only nurse her, so we don't have any issues

> with eating yet. When we've tried to feed her little bites, it has

> come back out like she is not coordinated to respond to it like our

> other children were. I am aware that that is an issue that will need

> patience.

>

> These are our questions right now: How important is it to have her

> tested medically? What is involved; it is a blood test? I have been

> researching the internet for information, and I find that I might

> should have her thyroid function tested. I'd love to hear comments

> from seasoned parents. We like to treat medical issues as naturally

> as possible. If it's best that we have her tested, what type of

> doctor should we turn to for help? Also, does anyone have a great

> book that they'd recommend?

>

> Thanks so much!

>

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

messages to go to the sender of the message.

>

March 15, 2005