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Dear a-

I am not sure. In our family it is a little backwards. , our Charger,

is the eldest (16). Our middle son, Elliot (13) is the most mature,

disciplined and empathetic. He has always known he is in charge, and bears

that with acceptance and awareness of the nuances of difficulty for his

elder brother. will sometimes have a small oration about being the

teen and being the high school student and being the one we rely on to watch

his younger siblings if we step out. Elliot and I just exchange a knowing

glance. I am not sure of all the reasons why I leave Elliot in charge.

Some of it is 's various impairments. Alot of it is all that it takes

for to be all he is. He achieves highly at school - and it consumes

his life. All the effort it takes for him to process and excel at what he

does leaves little room for him to process the nuances of day to day

practical life. He manages self care extremely well, and has specific

responsibilities in the household - but I think it would be too much to ask

him to have a sense of " all is well " .

But now saying all this, I realize that though it is easier for Elliot to be

in charge, I owe it to to figure out what I would need him to be able

to understand and be aware of so he could be in charge - because those would

be the same I would expect him to have to live independently......

Thank you :o)

yuka

Question?

> How do you explain to your younger child that

> although their sibling is older inyears but not

> mentally than them? Hopefully that makes sense. The

> other day I had to go outside and Quintin asked who is

> the boss while you are outside. I told him he was and

> he said but is older. I responded that Quintin

> gets to be the boss this time. I know this is going to

> come up again how do I explain in a way the a 5 year

> old will understand.

> a mom to 8yr CHARGEr & Quintin 5yr seizure prone

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Dear a-

I am not sure. In our family it is a little backwards. , our Charger,

is the eldest (16). Our middle son, Elliot (13) is the most mature,

disciplined and empathetic. He has always known he is in charge, and bears

that with acceptance and awareness of the nuances of difficulty for his

elder brother. will sometimes have a small oration about being the

teen and being the high school student and being the one we rely on to watch

his younger siblings if we step out. Elliot and I just exchange a knowing

glance. I am not sure of all the reasons why I leave Elliot in charge.

Some of it is 's various impairments. Alot of it is all that it takes

for to be all he is. He achieves highly at school - and it consumes

his life. All the effort it takes for him to process and excel at what he

does leaves little room for him to process the nuances of day to day

practical life. He manages self care extremely well, and has specific

responsibilities in the household - but I think it would be too much to ask

him to have a sense of " all is well " .

But now saying all this, I realize that though it is easier for Elliot to be

in charge, I owe it to to figure out what I would need him to be able

to understand and be aware of so he could be in charge - because those would

be the same I would expect him to have to live independently......

Thank you :o)

yuka

Question?

> How do you explain to your younger child that

> although their sibling is older inyears but not

> mentally than them? Hopefully that makes sense. The

> other day I had to go outside and Quintin asked who is

> the boss while you are outside. I told him he was and

> he said but is older. I responded that Quintin

> gets to be the boss this time. I know this is going to

> come up again how do I explain in a way the a 5 year

> old will understand.

> a mom to 8yr CHARGEr & Quintin 5yr seizure prone

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Ive been thinking about this for a little while since you posted it earlier

and im kinda concerned about letting the 5 year old be the boss. I think it

should always be clear that the parent or gardian is the boss. The five your

old should " look after " his brother but that mommy, daddy (or whoever) is

the boss.

I dont think a 5 year old is mature enough to understand " being the boss " at

that stage. I think though he can understand that when he is out with his

brother he needs to know if his brother is doing something that could hurt

him or another person that he has to get mom, dad or whoever.

I guess from personal experience I really also dont like the term boss cause

my cosin 3 weeks younger then me was given " the boss " job when we were kids

and I was treated badly by her. I dont know how cognitivly delayed antonio

is, but I just feel making the younger one the boss is not right. Im not

saying Quintin would take advantage of being boss but how much does a five

year old know the difference between " boss " and " bossyness " .

I think its better to tell him that if mom or dad are inside he has to watch

out for his brother but that mom and dad are still the boss even if their

not there.

I hope that helps and i hope i havnt offended you!

Chantelle

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Ive been thinking about this for a little while since you posted it earlier

and im kinda concerned about letting the 5 year old be the boss. I think it

should always be clear that the parent or gardian is the boss. The five your

old should " look after " his brother but that mommy, daddy (or whoever) is

the boss.

I dont think a 5 year old is mature enough to understand " being the boss " at

that stage. I think though he can understand that when he is out with his

brother he needs to know if his brother is doing something that could hurt

him or another person that he has to get mom, dad or whoever.

I guess from personal experience I really also dont like the term boss cause

my cosin 3 weeks younger then me was given " the boss " job when we were kids

and I was treated badly by her. I dont know how cognitivly delayed antonio

is, but I just feel making the younger one the boss is not right. Im not

saying Quintin would take advantage of being boss but how much does a five

year old know the difference between " boss " and " bossyness " .

I think its better to tell him that if mom or dad are inside he has to watch

out for his brother but that mom and dad are still the boss even if their

not there.

I hope that helps and i hope i havnt offended you!

Chantelle

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Chantelle-

Very good points! Now I see why you are good in your job with the kids.

You are right on the mark with this! I hadn't thought of it in the way you

did -- and it makes so much sense!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

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Now here's a question that consumes a great deal of my thinking time. Not

exactly the " boss " issue as I do entirely agree with Chantelle's wise words

that Simon and I (parents) are " the boss " in our household. What does

sometimes (OK all the time) bother me is the fact that my nearly 4 year old

daughter appears to have elevated herself to the position of older sibling

to her nearly 6 year old sister. I know that she finds it so much easier to

comprehend than her sister with CHARgE does but I am afraid I have had to

tell her off for patronising her sister, answering for her, tranlating what

she thinks her sister needs or wants etc. As much as I have worried about

my daughter with a disability being marginalised by her obviously caring but

bossy sister, I have also worried about my medically unremarkable daughter

being traumatised by the issues pertaining to her sister's disability

(afraid this is one of my bugbears of the moment. More another time). I

have worried that she will grow up too fast, that we are overloading her

with ensuring that she has as much understanding of her sister's issues as

it appears that she is ready to understand (usually a litte while before J

herself understands). There is also the question of including her in J's

medical appointments etc since I was concerned that she thought we were all

going somewhere special from which she was excluded. So so much to sort

through!!

Sorry, not much use here in relation to your quesiton but glad this came up

so if anyone has any advise on how to deal with siblings and their issues (I

know you are out there Bonnie), I will also be very glad to hear it.

Flo

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Now here's a question that consumes a great deal of my thinking time. Not

exactly the " boss " issue as I do entirely agree with Chantelle's wise words

that Simon and I (parents) are " the boss " in our household. What does

sometimes (OK all the time) bother me is the fact that my nearly 4 year old

daughter appears to have elevated herself to the position of older sibling

to her nearly 6 year old sister. I know that she finds it so much easier to

comprehend than her sister with CHARgE does but I am afraid I have had to

tell her off for patronising her sister, answering for her, tranlating what

she thinks her sister needs or wants etc. As much as I have worried about

my daughter with a disability being marginalised by her obviously caring but

bossy sister, I have also worried about my medically unremarkable daughter

being traumatised by the issues pertaining to her sister's disability

(afraid this is one of my bugbears of the moment. More another time). I

have worried that she will grow up too fast, that we are overloading her

with ensuring that she has as much understanding of her sister's issues as

it appears that she is ready to understand (usually a litte while before J

herself understands). There is also the question of including her in J's

medical appointments etc since I was concerned that she thought we were all

going somewhere special from which she was excluded. So so much to sort

through!!

Sorry, not much use here in relation to your quesiton but glad this came up

so if anyone has any advise on how to deal with siblings and their issues (I

know you are out there Bonnie), I will also be very glad to hear it.

Flo

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Now here's a question that consumes a great deal of my thinking time. Not

exactly the " boss " issue as I do entirely agree with Chantelle's wise words

that Simon and I (parents) are " the boss " in our household. What does

sometimes (OK all the time) bother me is the fact that my nearly 4 year old

daughter appears to have elevated herself to the position of older sibling

to her nearly 6 year old sister. I know that she finds it so much easier to

comprehend than her sister with CHARgE does but I am afraid I have had to

tell her off for patronising her sister, answering for her, tranlating what

she thinks her sister needs or wants etc. As much as I have worried about

my daughter with a disability being marginalised by her obviously caring but

bossy sister, I have also worried about my medically unremarkable daughter

being traumatised by the issues pertaining to her sister's disability

(afraid this is one of my bugbears of the moment. More another time). I

have worried that she will grow up too fast, that we are overloading her

with ensuring that she has as much understanding of her sister's issues as

it appears that she is ready to understand (usually a litte while before J

herself understands). There is also the question of including her in J's

medical appointments etc since I was concerned that she thought we were all

going somewhere special from which she was excluded. So so much to sort

through!!

Sorry, not much use here in relation to your quesiton but glad this came up

so if anyone has any advise on how to deal with siblings and their issues (I

know you are out there Bonnie), I will also be very glad to hear it.

Flo

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Good evening, Flo.

Again, I am a little slow on the uptake!!

In the States there is an organization called Sibling Network and they offer

various " Sibshops " for children, teens and young adults who have sibs with

various handicapping conditions. I have had some experience with them and it is

a very good organization. It may be something that you will be interested in as

your two little cookies get older (I am not sure what age they begin with).

They have a website and while I don't have the exact address I am sure you could

" google " it or it is something tricky like " sibling network.org " or some

variation.

I have an adult friend who's sister, older, had severe CP and while my friend

tried her very best to be a good sister, she had " issues " . The first time she

attended a Sibshop--she and I were running it together-- she could only say that

she wished she had had such an experience when she was younger. Her sister has

since died but my friend continues to talk about how important that workshop was

for her. So.... put it in your " for the future " box.

pam

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Good evening, Flo.

Again, I am a little slow on the uptake!!

In the States there is an organization called Sibling Network and they offer

various " Sibshops " for children, teens and young adults who have sibs with

various handicapping conditions. I have had some experience with them and it is

a very good organization. It may be something that you will be interested in as

your two little cookies get older (I am not sure what age they begin with).

They have a website and while I don't have the exact address I am sure you could

" google " it or it is something tricky like " sibling network.org " or some

variation.

I have an adult friend who's sister, older, had severe CP and while my friend

tried her very best to be a good sister, she had " issues " . The first time she

attended a Sibshop--she and I were running it together-- she could only say that

she wished she had had such an experience when she was younger. Her sister has

since died but my friend continues to talk about how important that workshop was

for her. So.... put it in your " for the future " box.

pam

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Good evening, Flo.

Again, I am a little slow on the uptake!!

In the States there is an organization called Sibling Network and they offer

various " Sibshops " for children, teens and young adults who have sibs with

various handicapping conditions. I have had some experience with them and it is

a very good organization. It may be something that you will be interested in as

your two little cookies get older (I am not sure what age they begin with).

They have a website and while I don't have the exact address I am sure you could

" google " it or it is something tricky like " sibling network.org " or some

variation.

I have an adult friend who's sister, older, had severe CP and while my friend

tried her very best to be a good sister, she had " issues " . The first time she

attended a Sibshop--she and I were running it together-- she could only say that

she wished she had had such an experience when she was younger. Her sister has

since died but my friend continues to talk about how important that workshop was

for her. So.... put it in your " for the future " box.

pam

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Pam,

Great information. I forgot about it totally. Not only does the Sibling

Network provide Sibshops they have an on line support group similar to what we

have found here. a is on it and gets the same understanding and support

form those who walk in her shoes.

Even though Kris and Patty are close there are " feelings " that only another

sibling can understand. And she doesn't have to feel guilty about it!

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

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Hi Pam and Bonnie,

I am really behind with mail but would like to say thanks for the sibling

support info. The issue of Elly as a sibling of a child with disabilities

and the effect this may have on her really does test my brain. I have

discussed it here from time to time and Sally Prouty has spared me some

really reassuring advise off list. It just sort of creeps up on me from

time to time, usually when there is a great deal of activity to do with

(CI surgery recently of course brought it all flooding back).

Anyway, I feel quite reassured. I have also sought some advise by

" speaking " to some older siblings and I feel that Elly will be OK. They

have given me some (hopefully) useful websites, literature etc to read and

some very very useful advise and feedback directly related to their

experiences as " sibs " . What a very truly helpful bunch and so willing to

share so much of their own life experiences! I feel really lucky to have

access to adults who might be able to identify with Elly's experience. As

soon as she is old enough, I will encourage her to join the little siblings'

listserve. I got the info from Miami.

I have also been given a UK website for sibling issues so have lots more

reading to do.

Thank you so much both. Any and every bit of advise is always so valuable.

It is remarkable how at peace I feel about the whole issue now, but for how

long will my neurosis allow me to do this? Luckily, I have lots of e-mails

to look back at and remind myself of things that I can do to minimise the

trauma and facilitate the sibling relationship.

Flo

>

> Good evening, Flo.

> Again, I am a little slow on the uptake!!

>

> In the States there is an organization called Sibling Network and they

> offer various " Sibshops " for children, teens and young adults who have sibs

> with various handicapping conditions. I have had some experience with them

> and it is a very good organization. It may be something that you will be

> interested in as your two little cookies get older (I am not sure what age

> they begin with). They have a website and while I don't have the exact

> address I am sure you could " google " it or it is something tricky like

> " sibling network.org " or some variation.

>

> I have an adult friend who's sister, older, had severe CP and while my

> friend tried her very best to be a good sister, she had " issues " . The first

> time she attended a Sibshop--she and I were running it together-- she could

> only say that she wished she had had such an experience when she was

> younger. Her sister has since died but my friend continues to talk about

> how important that workshop was for her. So.... put it in your " for the

> future " box.

>

> pam

>

>

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