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Re: Digest Number 3500

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In a message dated 4/16/2006 7:10:50 A.M. Eastern Daylight Time,

hgiglio@... writes:

My hat is off to all you single

parents out there. You are truly amazing!

Actually my hat is off to all of our kids, who are truly the amazing ones.

They put up with us parents taking them from one therapy to another, to one

diet to another, from one supplement to another, from being constantly

" trained " , educated, corrected, brushed etc., they go through surgeries,

equipment

(MAFO,AFO's, helmets etc.) and all of this is on top of their disabilites.

Their life is never one of just being a child. Don't rock, don't drool, don't

dangle, the list goes on and on and yet they do all this and then when maybe

they have had enough of all this they have what we parents refer to as a

melt-down and then " we " the " poor " parents are beside ourselves with how hard

it

gets. I am one of those parents but today I thought it was a good time to

reflect on all that " our " kids have to go through just to live life and when

you

compare that to what we go through with, we are the lucky ones it could be a

lot worse. Can you imagine going through a verbal world being non-verbal?

How well would you cope? Can you imagine having to be around people all the

time when you don't like being around people? How would you feel if every

time you did something to calm yourself, someone was always trying to make you

stop.

I think the credit should really be given to those who deserve it, our KIDS

for putting up with us parents. :-)

Happy Easter to all!

Carol

Trishasmom

She isn't Typical, She's Trisha!

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Hi All! Happy Easter! So many topics that are points of interest to us

right now.

First of all, Jake turned 7 on Friday. I was very emotional. The day

before someone told me about her experience when she found out about her

daughter's Down syndrome and she said, " isn't it funny how those few little

words change your life forever, and nothing is ever the same? " I had never

thougth about it before in that way. I am so totally in love with my Jakey

that I do have big anxiety over losing him. Or our daughter. Yes, I also

am on antidepressants. I don't know many parents who have kids with special

needs who are NOT on them! It takes a little while for your body to adjust

but once it does, it makes things so much nicer.

We also just visited a lawyer in our new state (lived here 2 years now). We

made arrangements when Jake was a baby but lots has changed since then and

we also want to make sure that everything is in place for our kids. It is

very reassuring once it is done and everyone knows how you feel. Talk about

it with your family so everyone is clear. There is so much that no one

thinks about until it hits you in the face.

Luckily, Jake has never been a head banger except if he is having a fit

about something in the car. It happens less freqeuntly now that he realizes

it hurts him! His pain threshold is higher than the average person but he

does stop once he realizes it is hurting.

I hope everyone enjoys their holidays. My hat is off to all you single

parents out there. You are truly amazing!

Holly

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<< thought it was a good time to

reflect on all that " our " kids have to go through just to live life and when

you

compare that to what we go through with, we are the lucky ones it could be a

lot worse. >>

Good stuff Carol. Sometimes I look at and just marvel that she is alive at

all. How about being forced into the world and dragged away to another hospital

for immediate surgery, all those crazy lights and noises and tests and pain in

the first day of your life? How about open surgery and all the pain afterwards

and doctors telling you " they " don't feel pain? And then more surgery when

you're really old enough to " get " it, and the scopes and the prods and the tubes

and the suppositories and the trial meds and the little legs that have to walk

slower and the little bods that get so tired and hurt so much quicker. And

that's just the 'real " trauma.

The other stuff that is perceived trauma, like as you mentioned, being

nonverbal, or lights too bright, or things in the wrong place that cause real

fear, all the commotion and blur of a mall, or a grocery store, feeling pain

from your socks not fitting right or a label being in the back of your shirt,

having someone throw away your absolutely favorite thing in the whole world like

a ripped page from a book because it's " just trash " , or being terrified of a

bandaid, having horrible mystery cramps, then seeing a rush of blood and OMG

NOT THE PAD...anything but the pad!!! I would love to be inside her head for one

day just to know what she really likes and fears that I haven't yet figured out.

And Oh Yeah, let's not forget being surrounded everyday by totally ignorant

people who just can't understand simple things like books are stacked

horizontally not vertically, the toilet seat must stay up....WHEN are these

idiots gonna learn??

Thanks for a grateful outlook this holiday.

Sherry

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Happy Birthday, Jake!!!

Re: Digest Number 3500

> Hi All! Happy Easter! So many topics that are points of interest to us

> right now.

> First of all, Jake turned 7 on Friday. I was very emotional. The day

> before someone told me about her experience when she found out about her

> daughter's Down syndrome and she said, " isn't it funny how those few

> little

> words change your life forever, and nothing is ever the same? " I had

> never

> thougth about it before in that way. I am so totally in love with my

> Jakey

> that I do have big anxiety over losing him. Or our daughter. Yes, I also

> am on antidepressants. I don't know many parents who have kids with

> special

> needs who are NOT on them! It takes a little while for your body to

> adjust

> but once it does, it makes things so much nicer.

>

> We also just visited a lawyer in our new state (lived here 2 years now).

> We

> made arrangements when Jake was a baby but lots has changed since then and

> we also want to make sure that everything is in place for our kids. It is

> very reassuring once it is done and everyone knows how you feel. Talk

> about

> it with your family so everyone is clear. There is so much that no one

> thinks about until it hits you in the face.

>

> Luckily, Jake has never been a head banger except if he is having a fit

> about something in the car. It happens less freqeuntly now that he

> realizes

> it hurts him! His pain threshold is higher than the average person but he

> does stop once he realizes it is hurting.

>

> I hope everyone enjoys their holidays. My hat is off to all you single

> parents out there. You are truly amazing!

>

> Holly

>

>

>

>

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

> 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/

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

>

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Hi Holly,

Happy belated birthday to Jake.

Charlyne & Zeb

Holly Giglio wrote:

Hi All! Happy Easter! So many topics that are points of interest to us

right now.

First of all, Jake turned 7 on Friday. I was very emotional. The day

before someone told me about her experience when she found out about her

daughter's Down syndrome and she said, " isn't it funny how those few little

words change your life forever, and nothing is ever the same? " I had never

thougth about it before in that way. I am so totally in love with my Jakey

that I do have big anxiety over losing him. Or our daughter. Yes, I also

am on antidepressants. I don't know many parents who have kids with special

needs who are NOT on them! It takes a little while for your body to adjust

but once it does, it makes things so much nicer.

We also just visited a lawyer in our new state (lived here 2 years now). We

made arrangements when Jake was a baby but lots has changed since then and

we also want to make sure that everything is in place for our kids. It is

very reassuring once it is done and everyone knows how you feel. Talk about

it with your family so everyone is clear. There is so much that no one

thinks about until it hits you in the face.

Luckily, Jake has never been a head banger except if he is having a fit

about something in the car. It happens less freqeuntly now that he realizes

it hurts him! His pain threshold is higher than the average person but he

does stop once he realizes it is hurting.

I hope everyone enjoys their holidays. My hat is off to all you single

parents out there. You are truly amazing!

Holly

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

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/

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

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