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Ever hear of Code ? Your school needs to develop a safety plan because

there is a good chance will one day leave the school. He also needs an

aide for safety issues. This is a serious issue and you need to be firm with

the school that they will be held responsible if anything happens to them. Code

can be found at http://disabilitysolutions.org. You will have to

download acrobat adobe if you don't have it. Click on the icon that takes you

to past newsletters. There is one just on wandering.

I warned the school that my son is a wanderer. The teacher's response was " We

keep a good eye on him " ....well, it wasn't too long after she said that when he

left the building and went outside. He was only 4 at the time. We had a

meeting the next day. He was also gone for 8 minutes after they discovered him

missing. I hate to think how long he was really missing. They also did not

call the police. With Code , they must call the police within 1 minute.

What is 's speed time? Have the PT clock him. Calculate how far the

road or parking lot is from the door where he could leave....consider his speed

and the school will take this issue seriously.

Hope this helps!

(no subject)

Hi everyone! I have a question. I have a 3 1/2 year old son who is in

preschool. Recently, he has been running away from his classroom down the

hall, and wanted to know if anyone else had this problem. His teacher didn't

realize he was gone until he was halfway down the hall. I wrote her a note

asking her if she closes the door.........duh! I think he's playing a " catch

me " game with her, because he does this with me at home. what do you guys

think?

Debbie

mom of (3 1/2 ds)

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<<Wonderful hang in there my daughter is 8 and can now draw pictures of her

whole family, we even have legs and eyes!!! LOL,,,, nettie619>>

Ted still just draws a big head with hair, ears, eyes, mouth and feet...hehe

But he is coloring rather well on a coloring page. He will change colors

and use one color for one section. Before he just used to put the crayon to

paper and scribble a bit and be finished.

Gail, mom to Ted (10)

http://www.emandan.freeserve.co.uk/ted.htm

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Nic did and still does that. On Fridays he goes to a typical preschool(the other

4 days he's ina special class). On the first day, of course Nic escaped. They

called me in a said they were concerned that he didn't want to be there and what

should they do...like you I said, " Aaaa close the door " ? " put up a gate " ? what

more do you want? It wasn't that he didn't want to be there, it was that it was

a new place and he just wanted to check it all out! I would worry if he wasn't

more curious about his surroundings.

Di, mom to Jake(19,nda) and 4 (DS)

Pennsylvania

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LOL! Corrie's first word was s**t. DH said " Where did she hear that? " . I had

no excuse. I DIDN'T KNOW SHE COULD TALK YET!

B... mom with the red face

>my

sister goes in to daughters room who is in crib to check on her and says hi

to her she stands up and says Bit*h well my daughter who 3 then with ds and

doesnt speak at this point says her first word!! LOL,,,, My sister laughs

with delight she spoke her first word to her and is shocked in same

sentence......... We still giggle today about her first experience with my

daughter... .. I just laughed and said Opps , she must have heard me yell at

that woman last wk!!! Well of course my sister tells everyone of 's

first word ---lol thanks Nettie619

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In a message dated 2/6/02 7:06:34 AM Canada Central Standard Time,

Nettie619@... writes:

> I agree since mental retardation means a person is incapable of learning,

> and

> I know that is not my daughter and not anyone else's child either.. Since

> we

> are all capable of learning just all at a different pace.. thanks nettie619

>

Actually I've always figured retarded meant delayed. not incapable of

learning. both of these meanins do fit , she has learning difficulties,

and problems with social developement at times, and she does have slow

academic progress. :-)

Joy

Main Entry: mental retardation

Function: noun

Date: 1914

: subaverage intellectual ability that is equivalent to or less than an IQ of

70, is present from birth or infancy, and is manifested especially by

abnormal development, by learning difficulties, and by problems in social

adjustment

Main Entry: re·tard·ed

Pronunciation: ri-'tär-d & d

Function: adjective

Date: 1895

: slow or limited in intellectual or emotional development or academic

progress

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In a message dated 2/9/02 12:33:46 PM Canada Central Standard Time,

Nettie619@... writes:

> Hair loss is common in kids with ds , my daughter is 9 and has thin hair but

>

> a head full very pretty , but she had thin hair and hair loss spots for

> some

> time. It could be genetic something from ds or thyroid meds, alot ot things

>

> check with dr to make sure all tests have been done , several children have

>

> no hair at all. Its just all genetics and has to do with meds , and other

>

> possible medical things our kids deal are susceptible to. But best bet is

> having dr check her out to make sure its not a medical problem first.

I got the same old, ds kids loose hair stuff when was losing spots on

her head, from more then one ped. The lists helped me enormously, since it

gave me something to get the ped. to do. hehe

Hair loss was fairly common in the institutionalizd population of people

with ds, but since they are no longer institutionalized it's basically been

found that people with ds really don't have an increased seceptablity to

alopecia. (they were probably bored out of their skulls and pulling out their

own hair from bordom, pulling out her hair was what the first dr. I asked

about these spots said they were from) There are many 'normal' people out

there who have alopecia and now a days you would never guess because most can

get very realistist wigs.

I don't know much about thyroid, but I thought the hair symptom for that was

thin hair, which I always took to mean all over the head. :-)

Round bald spots are usually caused by an auto-immune system response

(similar to arthritus type of thing and perhaps the thyroid thing is also an

immune response i really don't know alot about that, as she's always tested

normal. ;-)) in which the body attacks it's own hair folicles. This was the

information given when was getting the round spots, that were swiftly

taking over hugh areas of her head when she was about 4 or 5. This is

probably why topical steriods help in some cases (don't steriords help some

arthritus suffers) but not all. But this dermotologist did say that

basically ther really DON'T know why it happens and what triggers it,

research has indecated immune response but they still had a long way to go.

You do need to consult a dermatolgist to get a diagnosis. And by the time

you can actually get in to see one the hair might acutally be growing back,

such is the nature of this type of problem. A good dermatolgist will look

at different areas of the body, including the nails to see if other areas are

effected.

's diagnosis was alopecia areata (sp?) there are also 2 other types, one

is alopecia total----- (again sp?) can't remember the middle one but the

first is usually only round spots or baldness then it goes on to the middle

one and the last I believe included total loss of all body hair and nails?

And this is not to be confused with male pattern baldness, which is an

alopecia to, one that is inherited tho. hehe (like hubbies thinning hair

line, lol).

has not had any of the round spots for about 3 or 4 yrs now. She has

also not had a period of 2 or 3 months where we cannot get rid of an

infection so her body is fighting that for that long it evidently effects her

hair follicles, in 3 or 4 yrs either. (that's when these spots started in

her case) I think Kathy's (northerner) (?) also had an alopecia

problem, which usually followed some stressful situation to. Can't remember

if she's on this list, i think so......

Joy

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  • 2 weeks later...

Main Entry: aprax·ia

Pronunciation: ( " )A-'prak-sE- &

Function: noun

Etymology: New Latin, from Greek, inaction, from a- + praxis action, from

prassein to do

Date: circa 1881

: loss or impairment of the ability to execute complex coordinated movements

without impairment of the muscles or senses

- aprac·tic /-'prak-tik/ or aprax.ic adjective

Dyspraxia was not listed on the online dictionary..but DSY usually is used for

difficult.

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  • 2 weeks later...
Guest guest

doesn't have this problem but I remember our ped expected him

to so I guess it was at least fairly common. He recommended Alph-Keri soap

and lotion. don't know if it works or not. For what it's worth. Jessie

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In a message dated 3/3/02 5:23:47 PM Central Standard Time, Nettie619@...

writes:

> . So some say Our

> kids dont have the right to be here , I say we dont, it is these kids who

> are

> doing more work here than we are, it is there world we are just here to

> learn

> from them! Thanks to all who help our kids!!! Nettie619 Jeanette

>

> Right on! had put more love into the world by the time he was

> 5 years old than most people do in a long life time. And he's been doing

> it ever since then too.

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I have never had any concerns about this, but my son also does that, chews a

couple of times and swallows, I think that it may be a patience thing.

Sherri Mom to Tayler 3 1/2 wds and Cierra 2 nds

(no subject)

> After reading the mails on eating I have a question how many of our kids

dont

> chew their good my daughter chews once or twice and swollows the food,

How

> many other children do this? And I am wondering if its a therapy issue or

> maybe a medical thing of the throat or just no patience? thanks nettie619

>

>

>

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My son (10 tomorrow) still does not chew as well

as I would like. I am a royal pain and keep reminding

him to chew chew, chew. He tells me I Ammm with real

attitude. He was a mouth stuffer too and I find I have

seen that one a lot less lately. He still does not

swallow pills and he has tried because he wanted to be

like his brother Zach. So if its a throat thing I just

do not know. He might not like the taste of the pills.

Pam

--- Nettie619@... wrote:

> After reading the mails on eating I have a question

> how many of our kids dont

> chew their good my daughter chews once or twice and

> swollows the food, How

> many other children do this? And I am wondering if

> its a therapy issue or

> maybe a medical thing of the throat or just no

> patience? thanks nettie619

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

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Guest guest

Welcome & Ben, we're glad you're here! Hope to learn more about

that great kid of yours . I'm kindof new here myself but I just

jumped right in. Everyone has been great at answering my many questions

& has overall just been a great source of encouragement. I have three

great kids, 15, 11 & 3 months w/ds.

Hope

CJ@... wrote:

>

> Hello, my name is and I have an 11 year old son, Ben, who has Down

> Syndrome. He is the greatest kid.

> Thanks for having me.

> CJ

> <A HREF= " http://www.buckrun.org/ " >Welcome to www.buckrun.org</A>

>

>

>

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Guest guest

Nettie619@... wrote

> So please be patient and caring before

> judging others ,,,,,,, Isnt this what we want for our kids and

> families?

> Lead by example and not by judgement! Nettie619

>

>

Nettie, what post are you referring to?

Hope

>

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In a message dated 3/24/02 9:46:54 AM Central Standard Time,

Nettie619@... writes:

> She and I deserve respect and if they cannot give it then

> are they anyone I really want to know? Probably not!! So thats my story

> and Im stickin to it!! LOL .. I have loved being a part of this group and

> learning from all of you. . And hope you are all well and happy!!!

> Nettie619

>

> You said it ALL, Nettie

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In a message dated 3/24/2002 4:04:42 PM Eastern Standard Time,

Nettie619@... writes:

<< . I am not a judgemental person and will not judge

anyone I only ask you consider others before you make judgemental remarks

about others lives and decisions I beleive we all do what we felt right! >>

Excuse me Nettie, but I think you are judgmental, because you're judging me

for my remark. I thank God for not letting ME do something stupid. I did

not say it was stupid for other people to make other choices. Since I wanted

Liam so much it would have been stupid of me to let the DS get in the way of

me being his mother. (I'll leave my opinion of what other chose to do out of

it.).

Yes. I had time to get used to it, but I didn't have a little baby in my

arms while getting used to it like other people, either. So please don't

judge me, because I wasn't judging anyone else.

Kathy, Liam's mom (almost 4)

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In a message dated 4/8/02 4:40:32 PM Central Daylight Time,

breedeveld@... writes:

> Maybe one very fertile stranger crossing the district about nine months

> ago?????

>

> Rob

> dad of Summer

> the Netherlands

>

> >> -----Oorspronkelijk bericht-----

>>

>> He must have been VERY busy.

>

Jessie, mom of , age 37, the light of my life.

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Guest guest

Maybe one very fertile stranger crossing the district about nine months

ago?????

Rob

dad of Summer

the Netherlands

-----Oorspronkelijk bericht-----

Van: JB66111@... [mailto:JB66111@...]

Verzonden: maandag 8 april 2002 23:37

Aan:

Onderwerp: (no subject)

Just said on the news: In Wichita KS in the last two weeks there

have

been 4 sets of twins born, plus 4 sets of triplets, one set of quads and

one

of sextuplets. What is going on there?

Jessie, mom of , age 37, the light of my life.

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I am wracking my brain to remember what was going on around here 9 months

ago. Nothing comes to mind. It was a long hot summer, maybe everyone was

peeling clothes to cool down? Darcy

Re: (no subject)

>LOL, Jessie, sounds like somebody was busy last year! :--)!!!

>

>

>

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<<bens fav word right now is " fag " courtesy of his brother and is he happens

to

call some big guy or girl for that matter a fag,. he will be toast.

decision

made. on to his home school.

well, i really need to go for now. write soon.

Kerrie >>

I am glad that Ben will be able to go to his home school. I love hearing

about Ben. I have been watching court tv and was muttering " Mucko " and

shaking my head and then Ted copied me and I thought ...hmmm this might not

sound good to others...

Gail, mom to Ted (10)

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In a message dated 4/15/02 7:30:56 PM Central Daylight Time,

gboughton@... writes:

> I have been watching court tv and was muttering " Mucko " and

> shaking my head and then Ted copied me and I thought ...hmmm this might not

> sound good to others...

> Gail, mom to Ted (10)

>

sometimes we don't know we do or say something until our kid picks it

up. Ooops- did I say that?

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

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Guest guest

Here are some phone numbers we used when my husband first filed his VA

claim.

Medical Records - One Stop: 314-538-4020 and

Health Folder - VA Processing: 314-538-4500

Also, have you contacted your local VA Representative? Ours has always been

very helpful. I hope this will help!! Good luck.

Kristi Cradit

(no subject)

> UPDATE ON JOSEPH JONES

> SEE MESSAGE BELOW

>

> If you have not called your representative here in Texas, Regarding the

> situation with ph the sick soldier not getting his benefits from

> the military, I thought I would forward you the toll free number to the

WHITE

> HOUSE @ no expense to you, Call 1-800- 648-3516

> Tell the switchboard operator WHO you want to talk too they will transfer

you

> at no charge. Ask for your Reprensitive in Washington and you will be

> transferred Free of Charge. Tell them your story, Or ask for the

presidents

> office, worth a try, I am going to do this in the morning.

> Thank you so very much for your help in Helping Joe

>

>

> ,

> I know this is short notice but I think the most effective thing you can

do

> is go to the media/and or protest outside a base gate and draw the media.

> I have found the legislators to be of not much help. I will call anyway

and

> you also should give your E-mail list the toll free switchboard to DC.

They

> can call 1-800648-3516. Then they ask for the name of the legislator and

they

> are transferred at no cost.

SNIP

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  • 2 weeks later...
Guest guest

Nettie:

Today is Labor Day everywhere in the world except the U. S. of A., so carpe

diem and go on strike!

Moms of the world, UNITE!

granny

---

" The people can always be brought to do

the bidding of the leaders. That is easy.

All you have to do is to tell them they are

being attacked, and denounce the

pacifists for lack of patriotism and

exposing the country to danger. "

-- Hermann Goering

====

http://www.bspyle.com/granny.html

(no subject)

> I beg my family to fire me or send me to my room for a couple days... They

> just wont do it!! Please please I say no cooking, cleaning, laundry,

Send

> me to my room... And I cant beleive she said that about PMS>>> I hate

those

> sexist jokes,,, and I got one back ,, PMS really means POST MARITAL

> SYNDROME!!!! So its really caused from marraige not menstrual......

> LOL....... Nettie619 Or Jeanette Mom to with ds, hypothyroid, and

> legally blind. Also mom to 3 more wonderful kids

>

>

>

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