victoria Re: Fw: introduce myself as charge

[Guest guest]

HI is it ok if i email jason? it wlil be cool to meet him

>

> Michele,

> I liked reading all about your growing up and things you parents

> did to help you along the way. My son, , is 31. Sounds like you

> and have a whole lot in commom concerning things you both have

> accomplished in your lives. lives with two friends who are both

> deaf but don't have CHARGE. There are staff working in their home to

> help them with things like getting to work and planning meals and

> cooking. works two days a week, 6 hours each day for a food

> store named Giant. He has a cat named Chubby. He likes to watch

> sports on tv and has a PlayStation 2, and a computer in his room. He

> is active in allot of deaf activities in the area where he lives.

>

> has a profound hearing loss so he uses ASL sign to communicate.

> He likes to carry a little tablet around for writing when people

> can't sign. This is his email if you would like to email him. He

> likes hearing from other adults with CHARGE.

>

> ,

> E-mail Address(es):

> jjones75@...

>

> mom to 31

>

>

> >

> > Hi everybody,

> >

> > Some of you might be eager to know how I live through challenges

> with mild CHARGE. I'll try to remember from the beginning to now.

> >

> > I remember my parents told me, before I was born my mother's

> water broke and they had to rush to the hospital, and they said the

> cord was around me or whatever it was. After I was delivered, the

> doctors noticed I had trouble breathing and didn't know what was the

> matter so they called it birth defect. They also put me in intensive

> care and I have been to the hospital several times since to see if

> there is any thing wrong with me, they found out I have one kidney

> and a breathing problem. That was all they knew and they didn't say

> anything about my deafness. it was in 1965. I didn't asked my parents

> a lot of questions about being born with CHARGE. I knew I was

> different with vision/hearing impairment, elf shape ears, loop

> shoulders, low muscles tone, one kidney, swallowing problem,

> breathing problem, late hormone developmrnt, lack of balance, small

> mouth and lack of smell. I think that is all. well as you know my

> parents were very protective of me because they did't want to worry

> me and I would be fine. I noticed my right side was worse side than

> the left side, my right eye has tunnel vision but I can see distnce.

> My right ear is very bad, I only can hear the high fremqiecy, I have

> one very small kidney is not working, but my left side ear is very

> good and has moderate hearing loss. My left eye is good I can see the

> distance, but still poor eyesight. i have one good kidney. My parents

> fed me with a little dropper and it too me a long time finish it. My

> poor parents , I might made them exhausted, I didn't have a feeding

> tube like many CHARGE babies.

> >

> > I've had four nose operations. My first, second, and fourth

> weren't doing very well, the doctors just tried to straighten my nose

> and widen nostrils to breath through. The third one was the best. The

> doctor from Colorado Springs took out all the bones and tissues in

> the back of my sinus and top of the roof of my mouth then I can

> breath better. it was because I couldn't breath through sinus and

> mucus kept running down forward instead of back of my sinus.

> >

> > I didn't start walking until I was three. I started wearing

> hearing aids and glasses at four, and went to kindergarden at seven.

> how did do I learn to start walking? I think my parents told me when

> I had trouble with balance and kept falling on something on my head I

> had to wear helmet for a while until I got better. I don't know about

> glasses. I think they noticed I couldn't see well so I went to eye

> doctor to get my new glasses and hearing aids. I'm not sure I

> remember what mom said, I went to mentally handicapped school when I

> was three or four and it wasn't right for me and my parents didn't

> like the idea to think I'm mentally retarded and so I guess the

> doctors were wrong; I went back to audiologists to test my hearing

> again and found out I couldn't hear until I wear hearing aids. I went

> to preschool or kindergarten with regular kids then I started

> mainstream with hearing and deaf. I start in first grade at eight

> and I did it real well with deaf group. I went to oral school until

> eighth grade. I wanted to learn sign so I could communicate with my

> few deaf friends who sign

> >

> > I have a lot of support from my big family I go everywhere with

> them to vacations, to the movies, go out eat, go to church and

> fishing camp and baseball. Some of my friends went to Lion Camp and

> church activity after I graduated from high shool. I kept myself busy

> mostly with my mom to bowling, lunch, golf, and gambling with her

> friends, I went with Mom to grocery shopping, Meals and Wheels for

> senior citizens. I miss my parents the most, my dad took me to church

> every Sunday and to socialize with people. I lived in my house for 41

> years with my parents until they passed away then I move to new town

> home to be independent. I live by my sister and my nephew with his

> wife so I visit them sometimes. finally I got the job at Kruppp

> Robins for ten years and I really enjoyed it. they are engineers and

> I do assisting like stock the kitchen, do copy work, scanning, and

> shredding. I work part time, four days a week, and two and half hours

> a day. Mostly I do my own thing like working on my computer and

> reading a book if they don't have work for me, and that's fine with

> me. My parents really helped a lot to find the job when I wasn't

> crazy about working.

> >

> > Making friends wasn't easy like normal kids. I made just a few

> who very understanding that I'm different. I used to be self

> conscious about how I look, how skinny I was and I didn't like my

> shoulders much. There weren't very many CHARGE around and my family

> used to tell me it was very rare to get CHARGE and I thought maybe

> very few people around this world had it.Also I have been around

> normal people for a long time. Sometime I get irritated and want to

> get good shape like they have. I remember my few friends and family

> told me to be yourself. If they aren't friendly that is their problem

> so I got better not to worry what people think.

> >

> > I did funny things sometime from when I was a toddle until now

> if I can remember. Well maybe not that funny. I think when I was a

> kid when I had lack of balance and I didn't pay attention to the

> table and I fell on the edge of table and hit my forehead very badly

> and the blood stared to flow. I think my sister took me to see my mom

> and she was panicked so I went to the doctor to have stitches. Ouch!

> sometime, I tripped down the stairs but it is miracle that I'm okay.

> When I was nine I would like to go the pool to Eisenhower so I asked

> my mom if I can go to the pool but I wasn't paying attention to what

> she was saying when she was busy doing something. I thought she said

> go ahead, but really she said wait for me then we go. How stupid I

> was, here we go. I walked down to the busy street about ten minutes

> from my house and good thing the street wasn't real busy at that

> time. it seems like I know where to go, but a lady with her kids

> stopped me and wondered why I was walking alone. I don't remember if

> I told her I wanted to go to pool. she thought I might be lost, so

> she took me to the police station if I was lost. So a funny thing

> was that I climbed up and looked at the gerbils in the cage then I

> fell backward. Then the cage fell with me and the gerbils were on my

> face so I got some scratches, but not that bad. I'm sure my parents

> were panicked to know where I was. Finally the police took me home

> and my mom was very furious so I was grounded. I remember I spent the

> night with my cousins and we had fun playing outside at night. Well

> they could see and they pulled me to run and I smash into the mail

> box because I couldn't see. they forgot I couldn't see very well at

> night.

> >

> > Sometime I joke about myself like when I saw Lord Of The Ring

> and I was like uh, I do have elf ears like those. Sometime I tease

> because I walk like a penguin maybe that's because I like penguins

> and they are cute and that is that way I walk. I told my family I

> walk like I'm drunk, oh what the heck.

> >

> > I enjoy bowling, gambling, relaxing at home, reading a book

> (Harry Potter book series is my favorite). jigsaw puzzles and movies

> (Matrix movies and Harry Potter movies).

> >

> > There you go,

> > Hope you like my story

> > Michele S.

> >

> >