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I have Bleph and my strongest ability at school was spelling and it still is something I don't have a problem with. It seems to me that recently members on this site are looking for the slightest thing wrong with thier children. What's going on! allygirl1967 <kaldi@...> wrote: Hi, my younger son who has BLEPH ,is 8 and is struggling with school work at the moment,his reading is getting better but he still has a lot of difficulty with his spelling.Myself and my other son with BLEPH also had trouble with spelling.I was just wondering if anyone else with BLEPH had this problem.My other 2 children dont have BLEPH and they are both excellent at

spelling. Thanks Ally.

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My nephew's doctors have told us to expect learning difficulties/disabilities with his diagnosis. He's four and a half and only started speaking in the last six months. He and been signing to communicate. He's is special pre-k classes for developementally delayed and disabled children. I would assume that the doctors know that there is a link between learning disbilities and Bleph... JULIE IKEN <kookie61@...> wrote: I have Bleph and my strongest ability at school was spelling and it still is something I don't have a problem with. It seems to me that recently members on this site are looking for the slightest thing wrong with thier children. What's going on! allygirl1967

<kaldi@...> wrote: Hi, my younger son who has BLEPH ,is 8 and is struggling with school work at the moment,his reading is getting better but he still has a lot of difficulty with his spelling.Myself and my other son with BLEPH also had trouble with spelling.I was just wondering if anyone else with BLEPH had this problem.My other 2 children dont have BLEPH and they are both excellent at spelling. Thanks

Ally.

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- I don't like your message here. As a parent I

am not LOOKING for something wrong with my child. I

have a child diagnosed with BPES that has other

symptoms that are not in line with BPES. This

community is a good resource, or was, to ask if other

parents are dealing with the same things. Perhaps my

child was misdiagnosed and does not really have BPES -

that would explain the other symptoms we are seeing.

If another parent has information that can help in

anyway then what does it hurt to ask?

I don't think anyone is insinuating that ALL of these

" side " problems are related to BPES. Quite the

contrary - I think I see parents questioning if there

is something ELSE going on with their kids.

April

--- JULIE IKEN <kookie61@...> wrote:

> I have Bleph and my strongest ability at school was

> spelling and it still is something I don't have a

> problem with. It seems to me that recently members

> on this site are looking for the slightest thing

> wrong with thier children. What's going on!

>

>

> allygirl1967 <kaldi@...> wrote:

>

> Hi, my younger son who has BLEPH ,is 8 and is

> struggling with school

> work at the moment,his reading is getting better but

> he still has a

> lot of difficulty with his spelling.Myself and my

> other son with BLEPH

> also had trouble with spelling.I was just wondering

> if anyone else

> with BLEPH had this problem.My other 2 children dont

> have BLEPH and

> they are both excellent at spelling.

> Thanks Ally.

>

>

>

>

>

>

>

>

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Hi there,

Regarding learning difficulties and bleph....Our son Ethan is 3 years old, and at this age, he is more developmentally ahead of what our older son was, (whom doesn't have bleph) ! He is talking in sentences, knows how to count to 20...with the odd confusion:) he knows his alphabet, again, gets a little muddled:) He recognises numbers and letters easily when pointed out to him....I think, and his preschool teachers also say he is up there with the average 3 year old...they say he is pretty intelligent....and veeeeeery loving:) Cute story.....

The other day I picked him up from preschool, the teacher came up to me and said she was just sitting outside and Ethan, out of the blue, came up to her and said "Bronwyn....Ethans a handsome boy! " Hmmmm, you can tell what he gets told all the time at home from the family!!! He says that all the time....so we are sooo happy that we have installed in him how gosh darn cute, and handsome he is:)

PS: Ethan has had no surgeries yet....his vision is great, not tilting his head back to see, just raises his eyebrows:)

Leanne NZ

-- Re: blepharophimosis learning abillitys

My nephew's doctors have told us to expect learning difficulties/disabilities with his diagnosis. He's four and a half and only started speaking in the last six months. He and been signing to communicate. He's is special pre-k classes for developementally delayed and disabled children.

I would assume that the doctors know that there is a link between learning disbilities and Bleph...

JULIE IKEN <kookie61@...> wrote:

I have Bleph and my strongest ability at school was spelling and it still is something I don't have a problem with. It seems to me that recently members on this site are looking for the slightest thing wrong with thier children. What's going on!

allygirl1967 <kaldi@...> wrote:

Hi, my younger son who has BLEPH ,is 8 and is struggling with school work at the moment,his reading is getting better but he still has a lot of difficulty with his spelling.Myself and my other son with BLEPH also had trouble with spelling.I was just wondering if anyone else with BLEPH had this problem.My other 2 children dont have BLEPH and they are both excellent at spelling. Thanks Ally.

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A very defensive reply April, I gave an opinion based on my feeling about all the expressed concerns parents appear to have of thier childrens health on this site. Nothing wrong with that of course, it just strikes me that a number of parents seem 'over anxious' about thier kids and BPES. One sure way of making a child worried is an over anxious parent so concerned with the slightest thing but I'm talking about BPES only. Any other underlying disease process other than BPES is best left to a doctor to diagnose. april Eisele <aprileisele@...> wrote: - I don't like your message here. As a parent Iam not LOOKING for something wrong with my child. Ihave a child

diagnosed with BPES that has othersymptoms that are not in line with BPES. Thiscommunity is a good resource, or was, to ask if otherparents are dealing with the same things. Perhaps mychild was misdiagnosed and does not really have BPES -that would explain the other symptoms we are seeing. If another parent has information that can help inanyway then what does it hurt to ask? I don't think anyone is insinuating that ALL of these"side" problems are related to BPES. Quite thecontrary - I think I see parents questioning if thereis something ELSE going on with their kids.April--- JULIE IKEN <kookie61@...> wrote:> I have Bleph and my strongest ability at school was> spelling and it still is something I don't have a> problem with. It seems to me that recently members> on this site are looking for the slightest thing> wrong with thier

children. What's going on! > > > allygirl1967 <kaldi@...> wrote:> > Hi, my younger son who has BLEPH ,is 8 and is> struggling with school > work at the moment,his reading is getting better but> he still has a > lot of difficulty with his spelling.Myself and my> other son with BLEPH > also had trouble with spelling.I was just wondering> if anyone else > with BLEPH had this problem.My other 2 children dont> have BLEPH and > they are both excellent at spelling.> Thanks

Ally.> > > > > > > >

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>

> Hi, my younger son who has BLEPH ,is 8 and is struggling with

school

> work at the moment,his reading is getting better but he still has a

> lot of difficulty with his spelling.Myself and my other son with

BLEPH

> also had trouble with spelling.I was just wondering if anyone else

> with BLEPH had this problem.My other 2 children dont have BLEPH and

> they are both excellent at spelling.

> Thanks Ally.

>

>

>

>

>

>

>

>

>

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>

> Hi, my younger son who has BLEPH ,is 8 and is struggling with

school

> work at the moment,his reading is getting better but he still has a

> lot of difficulty with his spelling.Myself and my other son with

BLEPH

> also had trouble with spelling.I was just wondering if anyone else

> with BLEPH had this problem.My other 2 children dont have BLEPH and

> they are both excellent at spelling.

> Thanks Ally.

>

>

>

>

>

>

>

>

>

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Actually, there is no link between bleph and learning disabilities.

However some children have bleph and other issues as well. Some

people don't have bleph, and they have learning disabiliites.

It really doesn matter, we are all a sum total of parts.

>

> Hi, my younger son who has BLEPH ,is 8 and is struggling with

school

> work at the moment,his reading is getting better but he still has a

> lot of difficulty with his spelling.Myself and my other son with

BLEPH

> also had trouble with spelling.I was just wondering if anyone else

> with BLEPH had this problem.My other 2 children dont have BLEPH and

> they are both excellent at spelling.

> Thanks Ally.

>

>

>

>

>

>

>

>

>

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'scuse me while I apply a fire hose or two...

> My nephew's doctors have told us to expect learning

> difficulties/disabilities with his diagnosis.

If one's only condition is BPES - that is, there are no other issues

involved, and one's BPES is not part of something more extensive - then

most other things, like intelligence, height, walking-soonness, etc,

will follow 'normal' distributions. So among a population of 'pure' BPES

folks, expect to see a range of attributes. Some will be tall, others

not so tall. Some will learn quickly, others not so quickly.

There are many doctors - I'd say MOST doctors, and many ophthalmic

specialists - who are quite painfully clueless about what to expect with

BPES. If a doctor tried to tell me (as a BPES-enhanced person and Mensa

member, etc) to expect learning difficulties as being a part of BPES,

I'd start looking for a better doctor. Shop around; they're a dime a

dozen (if you don't count their fees), honestly.

Some kids have developmental delays AND BPES, but they're not " related "

as such unless (a) part of some other, broader, syndrome that includes

both of those conditions, or (B) an unfortunate coincidence.

> He's four and a half

> and only started speaking in the last six months. He and been signing

> to communicate. He's is special pre-k classes for developementally

> delayed and disabled children.

>

> I would assume that the doctors know that there is a link between

> learning disbilities and Bleph...

I never assume a doctor knows much about anything until they can prove

otherwise. In this case, it appears they haven't proved otherwise.

Remember this: (1) medicine is not an exact science, and there is still

much to learn, (2) BPES is rare enough not to be widely or well

understood by even the best doctors, (3) They're ONLY doctors; they are

all quite fallible and far from omniscient; revere them not.

> JULIE IKEN <kookie61@...> wrote: I have Bleph and my

> strongest ability at school was spelling and it still is something I

> don't have a problem with. It seems to me that recently members on

> this site are looking for the slightest thing wrong with thier

> children. What's going on!

I don't think schools teach much spelling these days, unfortunately,

even in countries with good education systems.

Rob W

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Does everyone truly believe kids with Bleph have so many other issues linked to it ? have 3 kids ith Bleph and many other family members, i just don;t see it. My kids seem to be ahead of the surve on many levels. My 11 motnh old is walking, talking about 5 words, 6 teeth ..i can go on and on. My older boys are in 6th & 8 th grade and no problems what so ever. Actually they are ahead of the game in many aspects. Just wondering if people are truly "reaching" for answers and saying it is Bleph related bethgordon03 <bethgordon03@...> wrote: Actually, there is no link between bleph and learning disabilities. However some children have bleph and other issues as well. Some people don't have bleph, and they have learning disabiliites.It really

doesn matter, we are all a sum total of parts. > > Hi, my younger son who has BLEPH ,is 8 and is struggling with school > work at the moment,his reading is getting better but he still has a > lot of difficulty with his spelling.Myself and my other son with BLEPH > also had trouble with spelling.I was just wondering if anyone else > with BLEPH had this problem.My other 2 children dont have BLEPH and > they are both excellent at spelling.> Thanks

Ally.> > > > > > > > >

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  • 1 month later...
Guest guest

>

> Hi, my younger son who has BLEPH ,is 8 and is struggling with school

> work at the moment,his reading is getting better but he still has a

> lot of difficulty with his spelling.Myself and my other son with BLEPH

> also had trouble with spelling.I was just wondering if anyone else

> with BLEPH had this problem.My other 2 children dont have BLEPH and

> they are both excellent at spelling.

> Thanks Ally.

>

Hi. I just joined this group, so I am probably late in responding to

your post. Actually, my 12 year old daughter with severe

blepharophimosis is extremely gifted academically, especially in

spelling, reading, written expression, and all areas related to the

English language. Her assessment scores rank her in the 99th

percentile in the nation, and she is in a special program for gifted

children. I honestly don't believe that there is a connection with

the syndrome and slow learning. All children have special gifts and

talents, which will eventually become appearant in different ways and

at different times. Your son is very special, and will excell in one

area or another. I hope I helped some.

Thanks,

D

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