Hello group

[Guest guest]

Congrats Amy ! When are you due. My prayers arewith you hoping the baby doesn't have it ...dealing with that myself now... Hugs Sharon Amy <mamahinch@...> wrote:

Hi Tera, I'm not really sure where Ambridge is, but it is good to see new members from PA. There are not many of us. I'm glad that your daughter does not have the bleph. Just not having to worry about surgeries and stuff is a good thing. I have been lucky so far. 's bleph is mild and we are getting a second opinion this coming week. I haven't been satisfied that she really has it. I actually got the name of the surgeon from a lady in the group who's father and she have bleph and were patients at this office. When we first came home from the geneticist, I was determined to find out where got it from and why. But now, I'm just determined to make her a happy kid. So far so good. She seems to like us!!!Your're right about the stares and comments

hurting your mom more than you. I get alot of stares because of 's glasses. But mostly from teenagers. Most of the adults are just curious how they can tell at such a young age that she needed the glasses. Of course, now we can't hardly keep them on her. She is constanly taking them off and eating them. Her eyes are definatley smaller than some kids her age, but when she isn't wearing the glasses...NO ONE has stared at her or asked what is wrong with her. That's how mild it is. I forget sometimes that she has it!!! I recently found out I was pregnant and the first thing that crossed my mind was I hope this one doesn't have it. But that's not in my hands. I'll take what ever the good lord hands me. Hopefully not twins, but hey....Blessings, amy> > Dear Group,> > > > I have been away for 2 weeks (mini-vacation from the older kids) > > and haven't been on the site. Just got back and was reading the > > messages and as usual...they made me tear up! I pray for everyone > > every Sunday in Church. Also I have "The Blepharophimosis Group" > on > > the prayer list. I've come to realize that

I can't pray for these > > children's eyes to get better, because without surgery...that's > just > > not gonna happen. I pray mostly that everyone is happy and enjoys > > life to the fullest!!! I've talked to quite a few of ya'll, either > > thru email or messenger or on the phone, and the ones I have talked > > to have more severe cases than my . I have not had to go thru > > any teasing yet. However, I was reading some of the messages and > > one stuck in my mind. It was from a lady who said she had a big > > nose!! I do as well and I was teased in school...I can remember > how > > that hurt me and I can sympathize with other's who have been > > teased. I've come to realize, that I'm not the one with a > > problem...It's the person doing the teasing. That person is the > one

> > who is UGLY on the inside. And that's worst than anything that I > > went thru or anything these beautiful children will go thru....My > > is 11 months old, beautiful and very smart. She can walk, > say > > uh oh, thank you, and hello. And I recently found out she is going > > to be a big sister!!! Just wanted to let everyone know that I will > > be praying for the group. > > > > Blessings,> > Amy Hinchman> > West Mifflin, PA<a href="http://www.TickerFactory.com/"><img border="0" src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a>__________________________________________________

[Guest guest]

Sharon,

Thanks...I'm due around April 22nd...Long way to go...The

genticist said Emmy was 1:1,000,000,000 and the chances of any other

babies getting it are very low...but hey Emmy was a new mutation!!!

Blessings, amy

> > > Dear Group,

> > >

> > > I have been away for 2 weeks (mini-vacation from the older

> kids)

> > > and haven't been on the site. Just got back and was reading

the

> > > messages and as usual...they made me tear up! I pray for

> everyone

> > > every Sunday in Church. Also I have " The Blepharophimosis

> Group "

> > on

> > > the prayer list. I've come to realize that I can't pray for

> these

> > > children's eyes to get better, because without

surgery...that's

> > just

> > > not gonna happen. I pray mostly that everyone is happy and

> enjoys

> > > life to the fullest!!! I've talked to quite a few of ya'll,

> either

> > > thru email or messenger or on the phone, and the ones I have

> talked

> > > to have more severe cases than my . I have not had to go

> thru

> > > any teasing yet. However, I was reading some of the messages

> and

> > > one stuck in my mind. It was from a lady who said she had a

big

> > > nose!! I do as well and I was teased in school...I can

remember

> > how

> > > that hurt me and I can sympathize with other's who have been

> > > teased. I've come to realize, that I'm not the one with a

> > > problem...It's the person doing the teasing. That person is

the

> > one

> > > who is UGLY on the inside. And that's worst than anything

that

> I

> > > went thru or anything these beautiful children will go

> thru....My

> > > is 11 months old, beautiful and very smart. She can

walk,

> > say

> > > uh oh, thank you, and hello. And I recently found out she is

> going

> > > to be a big sister!!! Just wanted to let everyone know that I

> will

> > > be praying for the group.

> > >

> > > Blessings,

> > > Amy Hinchman

> > > West Mifflin, PA

>

>

>

>

>

[Guest guest]

Hello Joan,

Your message about your 19yr old coming home with a lip piercing

reminds me of our recent visit to our 19yr old daughter (with BPES)

She surprised us with a pierced tongue of all things & this is after

the belly button..........!! She also coped with the `issues` as she

grew up & is a much stronger, caring & compassionate girl because of

it.

I would be interested to know if your daughter has an interest in, or

has already found out, whether she is Type 1 or 2.

Bye for now

God Bless

Maree

>

> > Dear Group,

> >

> > I have been away for 2 weeks (mini-vacation from

> > the older kids)

> > and haven't been on the site. Just got back and was

> > reading the

> > messages and as usual...they made me tear up! I

> > pray for everyone

> > every Sunday in Church. Also I have " The

> > Blepharophimosis Group " on

> > the prayer list. I've come to realize that I can't

> > pray for these

> > children's eyes to get better, because without

> > surgery...that's just

> > not gonna happen. I pray mostly that everyone is

> > happy and enjoys

> > life to the fullest!!! I've talked to quite a few

> > of ya'll, either

> > thru email or messenger or on the phone, and the

> > ones I have talked

> > to have more severe cases than my . I have not

> > had to go thru

> > any teasing yet. However, I was reading some of the

> > messages and

> > one stuck in my mind. It was from a lady who said

> > she had a big

> > nose!! I do as well and I was teased in school...I

> > can remember how

> > that hurt me and I can sympathize with other's who

> > have been

> > teased. I've come to realize, that I'm not the one

> > with a

> > problem...It's the person doing the teasing. That

> > person is the one

> > who is UGLY on the inside. And that's worst than

> > anything that I

> > went thru or anything these beautiful children will

> > go thru....My

> > is 11 months old, beautiful and very smart.

> > She can walk, say

> > uh oh, thank you, and hello. And I recently found

> > out she is going

> > to be a big sister!!! Just wanted to let everyone

> > know that I will

> > be praying for the group.

> >

> > Blessings,

> > Amy Hinchman

> > West Mifflin, PA

> >

> >

> >

> >

>

>

>

>

> ____________________________________________________

> Start your day with - make it your home page

> http://www./r/hs

[Guest guest]

Hello Tera,

welcome to the group although that was some time ago now - I am

catching up on posts.

I am 48yrs with BPES - the first in my family who had no idea what

was wrong with me (the other 6 children do not have the syndrome)

I also was suspected of being chinese, & like you now quite like the

idea! mmm I wonder whether there is surgery for that..........????

Actually when we visited China, my daughter with BPES, 19yrs, a few

years ago we were stared at as well as we weren`t really THAT chinese

looking!

Our children really are beautiful aren`t they & in fact the different

look can be attractive - my husband has always said it was my eyes

that grabbed his attention when he met me but in a good way - he was

fascinated & so I got him - HOOK LINE & SINKER!!! Whoops, hope you

know what that saying means.

God bless you all

Maree

> Hello Amy,

>

> I just joined this group about two weeks ago, and I am from

> Ambridge, Pa. We are neighbors! I am 35 years old, and I have

BPES.

> I have a five year old daughter, Gloriana. She didn't inherit my

> syndrome.

>

> After reading some of the messages here, I now have a better idea

of

> what my mother went through as I grew up. I'm sure that any stares

> or comments hurt her much more than me! I was blissfully naive, at

> least until I was about ten. Some of the kids would say I was

> Chinese, as if that was such a terrible thing! Now I like the idea

> of looking oriental and mysterious! If my daughter had my

syndrome,

> I would let her know that some people might look at her eyes

because

> they are unusual and beautiful.

>

> I know the Lord permitted my birth defect, and so I have to be

> content with myself. I can't imagine what other path my life would

> have taken without it. After high school, I spent a year keeping

to

> myself because I was so self-conscious, but the Lord used that time

> to draw me closer to him, and so it was all worth it!

>

> God bless you, Tera M.

>

>

>

>

> -- In blepharophimosis , " Amy " <mamahinch@y...>

wrote:

> > Dear Group,

> >

> > I have been away for 2 weeks (mini-vacation from the older

kids)

> > and haven't been on the site. Just got back and was reading the

> > messages and as usual...they made me tear up! I pray for

everyone

> > every Sunday in Church. Also I have " The Blepharophimosis Group "

> on

> > the prayer list. I've come to realize that I can't pray for

these

> > children's eyes to get better, because without surgery...that's

> just

> > not gonna happen. I pray mostly that everyone is happy and

enjoys

> > life to the fullest!!! I've talked to quite a few of ya'll,

either

> > thru email or messenger or on the phone, and the ones I have

talked

> > to have more severe cases than my . I have not had to go

thru

> > any teasing yet. However, I was reading some of the messages and

> > one stuck in my mind. It was from a lady who said she had a big

> > nose!! I do as well and I was teased in school...I can remember

> how

> > that hurt me and I can sympathize with other's who have been

> > teased. I've come to realize, that I'm not the one with a

> > problem...It's the person doing the teasing. That person is the

> one

> > who is UGLY on the inside. And that's worst than anything that I

> > went thru or anything these beautiful children will go thru....My

> > is 11 months old, beautiful and very smart. She can walk,

> say

> > uh oh, thank you, and hello. And I recently found out she is

going

> > to be a big sister!!! Just wanted to let everyone know that I

will

> > be praying for the group.

> >

> > Blessings,

> > Amy Hinchman

> > West Mifflin, PA

[Guest guest]

>

> I am a step-mother of a 9yr autistic boy. My husband recently got

> custody of him and he is now living with us. I don't know much about

> autism, but trying to learn as much as I can. Right now we are trying

> to intoduce him to new foods (he only eats foods with crunchy

> textures). His diets consists of chicken nuggets, bacon fried hard,

> fried spam, and french fries. He also eats chips and cookies. How can

> my husband and I get him to at least try new foods? Can anyone please

> give me some information on what techniques we can use?

Here are some ideas

http://www.danasview.net/hsrecovr.htm

http://www.amazon.com/exec/obidos/ASIN/1932565124/002-3687700-2588853

Dana

[Guest guest]

If you are able I would go the full course and get an appointment with Dr. Usman

in Chicago. She is a Dan Doc and is one of the best in the field.

Re: Hello Group

>

> I am a step-mother of a 9yr autistic boy. My husband recently got

> custody of him and he is now living with us. I don't know much about

> autism, but trying to learn as much as I can. Right now we are trying

> to intoduce him to new foods (he only eats foods with crunchy

> textures). His diets consists of chicken nuggets, bacon fried hard,

> fried spam, and french fries. He also eats chips and cookies. How can

> my husband and I get him to at least try new foods? Can anyone please

> give me some information on what techniques we can use?

Here are some ideas

http://www.danasview.net/hsrecovr.htm

http://www.amazon.com/exec/obidos/ASIN/1932565124/002-3687700-2588853

Dana

[Guest guest]

>

> Hi Bee.

>

> Pictures of me one in December before the diet and now, looking

good but as I said now have a cold bring it on.

==> did you intend to include a link to your pictures?

Bee

[Guest guest]

Hello Bee.

Yes I did could I send them to you so you can see the difference 4 months

makes and you can post them. Many Thanks

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

is the world's favourite email. Don't settle for less, sign up for

your freeaccount today.

[Guest guest]

>

> Hello Bee.

> Yes I did could I send them to you so you can see the difference 4

months makes and you can post them.

==>Yes, please send them to me.

Bee

[Guest guest]

Hey there! I'm and I homeschool my 16 yr old son with AS.

I'd love to talk to others who are homeschooling their teens. Compare

notes?

~Sam

>

> My name is . My son is Shane. He is 14 and autisic. I am

> homeschooling him. I found this on a web site and was hoping to

find

> the person, so I can get soem help.

> Hi Marilyn,

> I am also home schooling. I am using K-12 program,

> through virtual school. I am getting it through a

> school dist. in Kansas. I know the cirriculum is a

> good one, and they provide everything from computers

> to books and workbooks, along with art supplies and

> science materials. We have a counselor who is a

> teacher, that works with us for testing and placement

> issues. It is the best thing we have ever done! The

> kids are less stressed and the government dosen't have

> control over them. I pay enrollment fees and that is

> it!! E mail me directly if you have any questions.

> God Bless, Debbie

> I hope to find some help and I also hope some friends for my son.

Thank

> you

>

[Guest guest]

In a message dated 6/3/2007 9:02:09 AM Central Daylight Time,

danasview@... writes:

> Hey there! I'm and I homeschool my 16 yr old son with AS.

> >I'd love to talk to others who are homeschooling their teens. Compare

>

You can add me to your list...I homeschool...my daughter is 14.

Kristi in Alabama

**************************************

See what's free at

http://www.aol.com.

[Guest guest]

>

> Hey there! I'm and I homeschool my 16 yr old son with AS.

> I'd love to talk to others who are homeschooling their teens. Compare

I homeschool all four of my kids. My oldest will be 13 in 2 weeks.

Dana

[Guest guest]

I can't help with that, but my nephew who has autism attends an on-line high

school.

S S

My name is . My son is Shane. He is 14 and autisic. I am

homeschooling him. I found this on a web site and was hoping to find

the person, so I can get soem help.

Hi Marilyn,

I am also home schooling. I am using K-12 program,

through virtual school. I am getting it through a

school dist. in Kansas. I know the cirriculum is a

good one, and they provide everything from computers

to books and workbooks, along with art supplies and

science materials. We have a counselor who is a

teacher, that works with us for testing and placement

issues. It is the best thing we have ever done! The

kids are less stressed and the government dosen't have

control over them. I pay enrollment fees and that is

it!! E mail me directly if you have any questions.

God Bless, Debbie

I hope to find some help and I also hope some friends for my son. Thank

you

_______________________________________________

Join Excite! - http://www.excite.com

The most personalized portal on the Web!

[Guest guest]

I homeschooled for 8 years or so. My kids are now basically grown -- one is

about to turn 20 and the other will be 18 in a few months. I have a website

that hasn't been updated in a very long time with info about some of the

homeschooling stuff we did. You can find that at www.kidslikemine.org

--

Michele -- Webmaster of Health Gazelle

talithamichele@...

http://www.atraceofme.com

http://www.healthgazelle.org

" There is freedom within. There is freedom without. Try to catch the deluge

in a paper cup. "

-- Crowded House

[Guest guest]

Hi Dana,

First let me say, WOW!! I'm so impressed. Have you always

homeschooled? What made you decide to do it? I mainly decided out of

desperation and the feeling that I had no other options for my son.

It's really hard on my marriage, though. My husband isn't his father,

and he doesn't really understand why I can't just " put him back in

school. " It has me second guessing my decision alot.

~

> >

> > Hey there! I'm and I homeschool my 16 yr old son with

AS.

> > I'd love to talk to others who are homeschooling their teens.

Compare

>

>

> I homeschool all four of my kids. My oldest will be 13 in 2 weeks.

>

> Dana

>

[Guest guest]

Hi Kristi in Alabama and thanks! I'm in CA. So, why did you decide to

homeschool?

~

>

> In a message dated 6/3/2007 9:02:09 AM Central Daylight Time,

> danasview@... writes:

>

> > Hey there! I'm and I homeschool my 16 yr old son with

AS.

> > >I'd love to talk to others who are homeschooling their teens.

Compare

> >

>

> You can add me to your list...I homeschool...my daughter is 14.

>

> Kristi in Alabama

>

>

> **************************************

> See what's free at

> http://www.aol.com.

>

>

>

[Guest guest]

>

> Hi Dana,

> First let me say, WOW!! I'm so impressed. Have you always

> homeschooled?

My #1 attended a private preschool and kindergarten. After that, he

has been homeschooled. He just finished 7th grade. The other three

have always been homeschooled.

>> What made you decide to do it?

Varying things. #1 was ahead in certain subjects and behind in

others. Even tho it was only a half-day program, he was still bullied

by other kids [and this was a christian school!] With biomedical, his

social skills and abilities in many areas are much improved. We are

considering enrolling him in a private high school.

>> I mainly decided out of

> desperation and the feeling that I had no other options for my son.

My #2 had no other options. His dx is " classic Kanner's autism " ,

severe, low functioning. The " experts " told me he would never talk.

So I would not have been able to get a real program for him from

public school, because the " experts " were recommending daily living

skills only. BTW, #2 talks now, even reads!

> It's really hard on my marriage, though. My husband isn't his father,

> and he doesn't really understand why I can't just " put him back in

> school. " It has me second guessing my decision alot.

My husband and I both work part time, so my husband does part of the

homeschooling, and I do the other part. It is not easy, and many days

I feel like enrolling all four of them *somewhere*, just for the time

off. But I don't. So far, it has worked out well.

Good luck.

Dana

[Guest guest]

> My name is lisa, and I am new here. I live in Hammond Indiana, and

> was wondering if I could have some info on enimas? The only one I have

> ever had, is the fleet. It did not work for me at all. I am married

> and hubby does not know I am doing this. He is very closed minded

> about them, so I will have to do it myself. I also have three kids, so

> I need somthing I can do while I have some " time " (not much lol)

> alone. I have a cronic sinus infection and I heard that cleaning my

> colon helps? Any info?thanks again.....lisa

Hi ,

Even better would be to cleanse your entire digestive tract, using a

product called homozon. It is a simple white powder consisting of ozone

bound to magnesium (through a proprietary process) that you mix with

water, then chase with something like fresh lemon juiced squeezed into

water - or even better a teaspoon of organic raw apple cider vinegar.

This would also be much easier to hide from your husband, since it is

simply something you drink, rather than having to lock yourself into the

bathroom for half an hour.

You will have to find your dosage level, and what you are looking for is

something called 'bowel tolerance'. This is the level where it causes

diarrhea. You want to take just enough to stay BENEATH this level (in

other words, you do not want to be having to run to the bathroom every

five minutes)...

You can buy homozon at the link below (and no, I am not affiliated with

this site in any way, but this is where I buy mine):

http://www.excellentthings.net/

It is about $26 for a bottle, which should last you quite a while.

Something else that should help with your chronic sinus infection is

using colloidal silver in a neti pot (this is simply a nasal wash, and

you can buy the neti pot at any CVS or pharmacy store) - here is a link

that describes it:

http://www.healingdaily.com/exercise/neti-pot.htm

The colloidal silver is expensive to buy, but you can make your own very

inexpensively. I highly recommend the silver-list:

http://silverlist.org

for learning how to cheaply make as much as you want with a minimal

investment (a few dollars, + buying the silver wire)...

It will be one of the best investments you ever made.

[Guest guest]

Hello all,We are brand new to the group and I can't wait to talk to other people who understand what life is like for us. It is hard to find people to relate to and truly understand what your life is like so I am really excited that we found this group....never knew it existed.The main reason for trying to find a group of people in our local area is because my husband and I need to put our son in a different school and I would like to hear from people what local school districts are good. Our son is 7 years old and severely autistic. He is currently at Suffield Elementary in their special education program. I love his teacher but due to some very unfortunate circumstances my husband and I do not want him returning to that environment next year and would like to explore other

districts in the area. We would greatly appreciate anyone and everyone's opinions about your school experiences. We live in Brimfield but are very close to Kent, Ravenna, Akron....just about everywhere.Thank you all for reading this and I can't wait to hear from you!!!Jen

[Guest guest]

Jen!

Nice to hear from you! We are

actually not to far from one another, as we are in Atwater and Waterloo Schools

(no, don’t think Waterloo is a good answer for you either). Out of curiosity,

What schools have you checked out? Have you checked out the autism

scholarship? Have you tried Kent? They have programs in Southeast

but not sure how they are. I have a friend who send’s their

daughter there. Unfortunatly I have found from experience that portage

county has very little to offer. Email me off group…

tmann5@...

Tina

" It often requires more courage to

dare to do right than to fear to do wrong. " -- Abraham Lincoln

From:

[mailto: ] On Behalf Of Jen

Sent: Wednesday, May 20, 2009

12:09 PM

Subject: [ ] Hello group

Hello all,

We are brand new to the group and I can't wait to talk to other people who

understand what life is like for us. It is hard to find people to relate to and

truly understand what your life is like so I am really excited that we found

this group....never knew it existed.

The main reason for trying to find a group of people in our local area is

because my husband and I need to put our son in a different school and I would

like to hear from people what local school districts are good. Our son is 7

years old and severely autistic. He is currently at Suffield Elementary in

their special education program. I love his teacher but due to some very

unfortunate circumstances my husband and I do not want him returning to that

environment next year and would like to explore other districts in the area. We

would greatly appreciate anyone and everyone's opinions about your school

experiences. We live in Brimfield but are very close to Kent, Ravenna,

Akron....just about everywhere.

Thank you all for reading this and I can't wait to hear from you!!!

Jen

[Guest guest]

Hi Jen,

I can't speak for the other areas, but I have had an excellent

experience so far with Akron Public Schools with regard to my son. He

is autistic and in the 1st grade. I think a large district is just most

likely to be able to offer more or better services, simply because the

need is there with so many children with special needs. My son is

enrolled at Bridges Learning Center, a school devoted entirely to

children with behavioral issues. Most of the kids have some type of

diagnosis. He is in a kindergarten/1st grade classroom with about 7

other kids, 2 teachers and I just can't say enough good things about his

teachers and the administration. I know there are also many other

special education classrooms and units throughout the district, which

hopefully my son will move on to once some of his more troubling

behaviors are under control. If you'd like more information, feel free

to email me. Good luck!

>

> Hello all,

> We are brand new to the group and I can't wait to talk to other people

who understand what life is like for us. It is hard to find people to

relate to and truly understand what your life is like so I am really

excited that we found this group....never knew it existed.

> The main reason for trying to find a group of people in our local area

is because my husband and I need to put our son in a different school

and I would like to hear from people what local school districts are

good. Our son is 7 years old and severely autistic. He is currently at

Suffield Elementary in their special education program. I love his

teacher but due to some very unfortunate circumstances my husband and I

do not want him returning to that environment next year and would like

to explore other districts in the area. We would greatly appreciate

anyone and everyone's opinions about your school experiences. We live in

Brimfield but are very close to Kent, Ravenna, Akron....just about

everywhere.

> Thank you all for reading this and I can't wait to hear from you!!!

> Jen

>

[Guest guest]

>

> hello all i just have a simple question, i was looking on the healing

reactions and saw that it said some examples of healing reactions would be dark

stool or black stool, is this possible while on bees program?

+++Hi there. What is your name?

What article as that in, since I don't believe I wrote it?

Also please explain why you are asking?

Bee