Re: Re: - surgery & pictures

[Guest guest]

Hi there.. Ethans first school visit was today.. he loved it.. i missed him like crazy and was tempted to ring and find out how he was tho he did have a teacher aide there and 2 big brothers!!!!!

I had one little boy say to me'Is your son blind?' so i precedded to tell him about how Ethan was born with no creases in his eyelids ( i find this the easiest way for kids to understand) he was quite happy after that. But anyways now Ethans decided hes a big school boy and wants to stay there instead of going back to kindy tomorrow but he cant understand he can only go once a week till he turns 5. pleased hes settling in ok tho.. Have a happy week everybody

blepharophimosis Re: - surgery & pictures

Hi Leanne! This is 's first eye surgery- he had open heartsurgery when he was 5 months old. That was scary. We're stillanxious about this one...This surgery will address his epicanthal fold, so it'll look likelittle cuts next to the corner of his eyes. They'll also take thetendons at the inner corner of his eyes and shorten them, which shouldpull his corners closer to his nose. The surgeon showed us somepictures of before and after bleph kids and we think we'll be able tosee the whites in the corners of his eyes. Then, in a year or so,he'll have ptosis surgery. seemed to like preschool this year, and it was a 2 year old Mom & Tot class. Not much was said in school, but my older daughter'sclassmates/peers have been asking questions for years. I try toanswer the questions honestly and in a way that honors 's dignity. Now I overhear Kate, 's sister, answer questions the same way! Nice surprise. Yes, lots of people think can't see, but Kate & Ilet them know he has excellent vision. I appreciate the kids honesty-I understand they're curious and I'm sure their parents are too! Hownice the kids give me the opportunity to talk about . I hope heis okay with the questions when he is older.> > Hi Sari...This is *little ethans* mum, the flying ethan:)...Will > this be s 1st surgery?....What does it involve doing???...And > how was his 1st day of preschool?...How do the other children react > with his eyes or don't they?....I know just when I take my older son > to school, all the children steer at Ethan, some ask if he is > *blind*...kids are so honest and blunt ha:)>

[Guest guest]

Hi Leah...Leanne here, Glad Ethans 1st day at *big boy school* went good:)...When I used to drop my eldest son at preschool, the kids would huddle around Ethans stroller and just look at him, one wee boy asked if he was blind also, now when I take Tyler to *big boy school*, the kids just peer at Ethan, sometimes I wonder what the best way is to explain to them about Ethans eyes?...I usually say, "theres nothing wrong with his eyes, he just has little eyelids", if anyone asks:) Anyways, catch you later, nice day down in CHCH today! How about you?

-- Re: blepharophimosis Re: - surgery & pictures

Hi there.. Ethans first school visit was today.. he loved it.. i missed him like crazy and was tempted to ring and find out how he was tho he did have a teacher aide there and 2 big brothers!!!!!

I had one little boy say to me'Is your son blind?' so i precedded to tell him about how Ethan was born with no creases in his eyelids ( i find this the easiest way for kids to understand) he was quite happy after that. But anyways now Ethans decided hes a big school boy and wants to stay there instead of going back to kindy tomorrow but he cant understand he can only go once a week till he turns 5. pleased hes settling in ok tho.. Have a happy week everybody

blepharophimosis Re: - surgery & pictures

Hi Leanne! This is 's first eye surgery- he had open heartsurgery when he was 5 months old. That was scary. We're stillanxious about this one...This surgery will address his epicanthal fold, so it'll look likelittle cuts next to the corner of his eyes. They'll also take thetendons at the inner corner of his eyes and shorten them, which shouldpull his corners closer to his nose. The surgeon showed us somepictures of before and after bleph kids and we think we'll be able tosee the whites in the corners of his eyes. Then, in a year or so,he'll have ptosis surgery. seemed to like preschool this year, and it was a 2 year old Mom & Tot class. Not much was said in school, but my older daughter'sclassmates/peers have been asking questions for years. I try toanswer the questions honestly and in a way that honors 's dignity. Now I overhear Kate, 's sister, answer questions the same way! Nice surprise. Yes, lots of people think can't see, but Kate & Ilet them know he has excellent vision. I appreciate the kids honesty-I understand they're curious and I'm sure their parents are too! Hownice the kids give me the opportunity to talk about . I hope heis okay with the questions when he is older.> > Hi Sari...This is *little ethans* mum, the flying ethan:)...Will > this be s 1st surgery?....What does it involve doing???...And > how was his 1st day of preschool?...How do the other children react > with his eyes or don't they?....I know just when I take my older son > to school, all the children steer at Ethan, some ask if he is > *blind*...kids are so honest and blunt ha:)>

[Guest guest]

Well it's nice to hear that Ethan likes going to

school. I think the best reaction to questions like

the little boy asked is to take the children serious

and answer them correct without overdoing. I mean they

just want to know what is wrong and they mostly do not

want a complicated medical explanation or even worst a

bagatellisation of the question. Going after my own

experiences I think you did very well.

regards,

Dolph Heideman

--- leah <leahs_male@...> wrote:

>

> Hi there.. Ethans first school visit was today..

> he loved it.. i missed him like crazy and was

> tempted to ring and find out how he was tho he did

> have a teacher aide there and 2 big brothers!!!!!

> I had one little boy say to me'Is your son

> blind?' so i precedded to tell him about how Ethan

> was born with no creases in his eyelids ( i find

> this the easiest way for kids to understand) he was

> quite happy after that. But anyways now Ethans

> decided hes a big school boy and wants to stay there

> instead of going back to kindy tomorrow but he cant

> understand he can only go once a week till he turns

> 5. pleased hes settling in ok tho.. Have a happy

> week everybody

>

>

> blepharophimosis Re: - surgery &

> pictures

>

>

> Hi Leanne! This is 's first eye surgery- he

> had open heart

> surgery when he was 5 months old. That was

> scary. We're still

> anxious about this one...

> This surgery will address his epicanthal fold,

> so it'll look like

> little cuts next to the corner of his eyes.

> They'll also take the

> tendons at the inner corner of his eyes and

> shorten them, which should

> pull his corners closer to his nose. The

> surgeon showed us some

> pictures of before and after bleph kids and we

> think we'll be able to

> see the whites in the corners of his eyes.

> Then, in a year or so,

> he'll have ptosis surgery.

> seemed to like preschool this year, and it

> was a 2 year old Mom &

> Tot class. Not much was said in school, but my

> older daughter's

> classmates/peers have been asking questions for

> years. I try to

> answer the questions honestly and in a way that

> honors 's dignity.

> Now I overhear Kate, 's sister, answer

> questions the same way!

> Nice surprise. Yes, lots of people think

> can't see, but Kate & I

> let them know he has excellent vision. I

> appreciate the kids honesty-

> I understand they're curious and I'm sure their

> parents are too! How

> nice the kids give me the opportunity to talk

> about . I hope he

> is okay with the questions when he is older.

>

>

> >

> > Hi Sari...This is *little ethans* mum, the

> flying ethan:)...Will

> > this be s 1st surgery?....What does it

> involve doing???...And

> > how was his 1st day of preschool?...How do the

> other children react

> > with his eyes or don't they?....I know just

> when I take my older son

> > to school, all the children steer at Ethan,

> some ask if he is

> > *blind*...kids are so honest and blunt ha:)

> >

>

>

>

>

>

[Guest guest]

Oh boy, children can be very very honest and ask their

questions without diplomacy. In my experience it's not

good to bagatellise the question. Yes it's true that

Ethan is not blind thank God for that, and it's good

to point that out but as everyone can see that

something is different from the rest I think it's good

to explain the BPES and preferrably at their

understanding level. It's not always easy as I found

out some 32 years ago but it's the best way to handle.

Regards,

Dolph Heideman

--- leelee <tltne@...> wrote:

> Hi Leah...Leanne here, Glad Ethans 1st day at *big

> boy school* went good:).

> .When I used to drop my eldest son at preschool, the

> kids would huddle

> around Ethans stroller and just look at him, one wee

> boy asked if he was

> blind also, now when I take Tyler to *big boy

> school*, the kids just peer at

> Ethan, sometimes I wonder what the best way is to

> explain to them about

> Ethans eyes?...I usually say, " theres nothing wrong

> with his eyes, he just

> has little eyelids " , if anyone asks:) Anyways, catch

> you later, nice day

> down in CHCH today! How about you?

>

> -- Re: blepharophimosis Re: - surgery &

> pictures

>

>

> Hi there.. Ethans first school visit was today.. he

> loved it.. i missed him

> like crazy and was tempted to ring and find out how

> he was tho he did have a

> teacher aide there and 2 big brothers!!!!!

> I had one little boy say to me'Is your son blind?'

> so i precedded to tell

> him about how Ethan was born with no creases in his

> eyelids ( i find this

> the easiest way for kids to understand) he was quite

> happy after that. But

> anyways now Ethans decided hes a big school boy and

> wants to stay there

> instead of going back to kindy tomorrow but he cant

> understand he can only

> go once a week till he turns 5. pleased hes settling

> in ok tho.. Have a

> happy week everybody

>

>

> blepharophimosis Re: - surgery &

> pictures

>

>

> Hi Leanne! This is 's first eye surgery- he had

> open heart

> surgery when he was 5 months old. That was scary.

> We're still

> anxious about this one...

> This surgery will address his epicanthal fold, so

> it'll look like

> little cuts next to the corner of his eyes. They'll

> also take the

> tendons at the inner corner of his eyes and shorten

> them, which should

> pull his corners closer to his nose. The surgeon

> showed us some

> pictures of before and after bleph kids and we think

> we'll be able to

> see the whites in the corners of his eyes. Then, in

> a year or so,

> he'll have ptosis surgery.

> seemed to like preschool this year, and it was

> a 2 year old Mom &

> Tot class. Not much was said in school, but my

> older daughter's

> classmates/peers have been asking questions for

> years. I try to

> answer the questions honestly and in a way that

> honors 's dignity.

> Now I overhear Kate, 's sister, answer

> questions the same way!

> Nice surprise. Yes, lots of people think can't

> see, but Kate & I

> let them know he has excellent vision. I appreciate

> the kids honesty-

> I understand they're curious and I'm sure their

> parents are too! How

> nice the kids give me the opportunity to talk about

> . I hope he

> is okay with the questions when he is older.

>

>

> >

> > Hi Sari...This is *little ethans* mum, the flying

> ethan:)...Will

> > this be s 1st surgery?....What does it involve

> doing???...And

> > how was his 1st day of preschool?...How do the

> other children react

> > with his eyes or don't they?....I know just when I

> take my older son

> > to school, all the children steer at Ethan, some

> ask if he is

> > *blind*...kids are so honest and blunt ha:)

> >

>

>

>

>

[Guest guest]

Hi Dolph, Thanks, I think that was probably the best way to explain it to a child! Sometimes I wish more children-adults would just just ask what is wrong with his eyes rather than just steer

at him:(..Have a nice day...leanne...NZ

-- Re: blepharophimosis Re: - surgery & pictures

Well it's nice to hear that Ethan likes going toschool. I think the best reaction to questions likethe little boy asked is to take the children seriousand answer them correct without overdoing. I mean theyjust want to know what is wrong and they mostly do notwant a complicated medical explanation or even worst abagatellisation of the question. Going after my ownexperiences I think you did very well.regards,Dolph Heideman--- leah <leahs_male@...> wrote:> > Hi there.. Ethans first school visit was today..> he loved it.. i missed him like crazy and was> tempted to ring and find out how he was tho he did> have a teacher aide there and 2 big brothers!!!!!> I had one little boy say to me'Is your son> blind?' so i precedded to tell him about how Ethan> was born with no creases in his eyelids ( i find> this the easiest way for kids to understand) he was> quite happy after that. But anyways now Ethans> decided hes a big school boy and wants to stay there> instead of going back to kindy tomorrow but he cant> understand he can only go once a week till he turns> 5. pleased hes settling in ok tho.. Have a happy> week everybody> > > blepharophimosis Re: - surgery & > pictures> > > Hi Leanne! This is 's first eye surgery- he> had open heart> surgery when he was 5 months old. That was> scary. We're still> anxious about this one...> This surgery will address his epicanthal fold,> so it'll look like> little cuts next to the corner of his eyes. > They'll also take the> tendons at the inner corner of his eyes and> shorten them, which should> pull his corners closer to his nose. The> surgeon showed us some> pictures of before and after bleph kids and we> think we'll be able to> see the whites in the corners of his eyes. > Then, in a year or so,> he'll have ptosis surgery.> seemed to like preschool this year, and it> was a 2 year old Mom & > Tot class. Not much was said in school, but my> older daughter's> classmates/peers have been asking questions for> years. I try to> answer the questions honestly and in a way that> honors 's dignity.> Now I overhear Kate, 's sister, answer> questions the same way! > Nice surprise. Yes, lots of people think > can't see, but Kate & I> let them know he has excellent vision. I> appreciate the kids honesty-> I understand they're curious and I'm sure their> parents are too! How> nice the kids give me the opportunity to talk> about . I hope he> is okay with the questions when he is older.> > > > > > Hi Sari...This is *little ethans* mum, the> flying ethan:)...Will > > this be s 1st surgery?....What does it> involve doing???...And > > how was his 1st day of preschool?...How do the> other children react > > with his eyes or don't they?....I know just> when I take my older son > > to school, all the children steer at Ethan,> some ask if he is > > *blind*...kids are so honest and blunt ha:)> > > > > > >

[Guest guest]

thanks Dolph. I find this the easiest to explain even with adults. Well it is true too. He was born without creases in his eyelids and he had to have surgery to put some in. It is also difficult with Ethan being developmentally delayed because he is still in nappies which is going to make it difficult for him at school. Does anyone else have low muscle tone children that they had trouble training. Would really appreciate some answers. Have a neat weekend everyone!

blepharophimosis Re: - surgery & > pictures> > > Hi Leanne! This is 's first eye surgery- he> had open heart> surgery when he was 5 months old. That was> scary. We're still> anxious about this one...> This surgery will address his epicanthal fold,> so it'll look like> little cuts next to the corner of his eyes. > They'll also take the> tendons at the inner corner of his eyes and> shorten them, which should> pull his corners closer to his nose. The> surgeon showed us some> pictures of before and after bleph kids and we> think we'll be able to> see the whites in the corners of his eyes. > Then, in a year or so,> he'll have ptosis surgery.> seemed to like preschool this year, and it> was a 2 year old Mom & > Tot class. Not much was said in school, but my> older daughter's> classmates/peers have been asking questions for> years. I try to> answer the questions honestly and in a way that> honors 's dignity.> Now I overhear Kate, 's sister, answer> questions the same way! > Nice surprise. Yes, lots of people think > can't see, but Kate & I> let them know he has excellent vision. I> appreciate the kids honesty-> I understand they're curious and I'm sure their> parents are too! How> nice the kids give me the opportunity to talk> about . I hope he> is okay with the questions when he is older.> > > > > > Hi Sari...This is *little ethans* mum, the> flying ethan:)...Will > > this be s 1st surgery?....What does it> involve doing???...And > > how was his 1st day of preschool?...How do the> other children react > > with his eyes or don't they?....I know just> when I take my older son > > to school, all the children steer at Ethan,> some ask if he is > > *blind*...kids are so honest and blunt ha:)> > > > > > >