Re: & Rose behavior struggles

[Guest guest]

Dear Kathy....thanks for that! I appreciate the input. It is soooo

incredibly hard with the behavior issues. Thanks for the support in

knowing we are not alone. I'm glad to hear your son is doing so

well. It's great to hear it from all the parents out there that this is

working for what seems to be most of the kids here. I do notice a

difference and it gives me something to hold on to for all of us. I know

she's been through so much....way more than I've taken, so it's hard to not

give in. Sometimes I " m just crazy mad that she did something and sometimes

it's sad to me and I get too emotional and give in. I'm really stopping

that lately because I want her to understand what is appropriate and I

think she does. Her reactions to what I say are different and I believe

the meds have a huge effect, so taking away the meds at our first

appointment means the most to me right now. Making sure I know whether

this works or not. I'm crossing my fingers!!! Thanks again ....

At 10:27 PM 7/18/2004, you wrote:

>You conversation is quite interesting to me. We've endured epilepsy,

>autism, mental delays and all....yet the number one thing that has about

> " done me in " through it all is behavior issues. It is VERY hard to

>punish, knowing full well that the behavior is coming from the disorder

>and/or treatments (yet, at other times, you have to count to 10 to save

>your child from being over punished --- from pinching their head off).

>Yet, we must force our kids to live in the " real " world which means that

>we must teach them what is appropriate and what is not. This is extra

>hard with some of our kids (like mine) because they just don't

>understand. I'm very thankful that is finally starting to

>understand consequences....but trust me, it has been a loooong time

>coming (several years) of following through on promises/threats. And

>we've had to try to make everyone in his life follow this also. This has

>been extra hard because most people " feel sorry " for him & will give in

>(and give him stickers, even though they threatened to take them away if

>he threw the toys). Well, he knows that & will " milk " it for everything

>he has got. As parents, we can't feel sorry for them, we must exercise

> " hard love " by sticking to our punishment/rewards with no exceptions.

>Yes, it is hard..... but trust me -- I can now look at in a store &

>tell him that if he wants to ride his car (battery operated) when we get

>home, he'd better stop spitting (or whatever). He understands it now &

>will change his behavior (most of the time). As I said, it has been a

>long hard battle, but now we are reaping the rewards. He knows I'm

>serious & will not change my mind if he doesn't change his behavior.

>I've been criticized by friends and family -- that I'm too hard on him

>(but they don't have a clue what all we've been through with behavior).

>We've had to learn as we go. My husband also uses the same techniques,

>so knows that if we threaten or promise......... it will happen, no

>exceptions.

> Sorry to ramble. This is what has worked with us. I hope I

>haven't sounded as if I'm preaching.... but I just wanted to share. I

>also want you to know that you are not alone in " pulling your hair out "

>over behavior issues. This area is extra hard. Hang in there!

>Kathy - mom to - keto since 02/00 (seizures 90-95% reduced), 9 yr

>old, epilepsy, autism, can drive a mean 4-wheeler!

>On Sun, 18 Jul 2004 21:09:55 -0500 Atwater

>.Atwater@...> writes:

> > Hello Rose...

> >

> > I jumped in this because I watch and read when I can. Your

> > explanation of

> > control and your issues are so incredibly familiar, that I was so

> > glad (not

> > in that sense) to hear that I wasn't alone. It sounds exactly like

> > my

> > daughter! She's almost 6 and has " periodic spasms " and the head

> > drops are

> > now making her fall to the ground. She's been on the diet for a

> > month and

> > I can't seem to get her high enough to tell if it's working. She

> > won't

> > take the fats of the cream and it makes it extremely difficult to

> > control. I now reason, beyond reasoning, to get her to where she

> > needs to

> > be...160. I need to see if it works and I believe she changes after

> > the

> > initial hospital visit for the better. When she came down to

> > moderate, her

> > head drops were hard and stronger than ever. But, when she gets

> > higher, I

> > think she seems to change and the diet works. I'm struggling daily

> > to keep

> > her in keto range and the " control " she works on having is exactly

> > the way

> > you explained it. My family makes me crazy when they just " don't

> > get

> > it " . I explain and explained for the last almost 2 years since this

> > has

> > happened that it's very difficult for her and I'm certainly not

> > happy with

> > the behavior, but we are working on it the best we can. Most of the

> > time,

> > she's so sweet...and then ---- at a snap of a finger, she's really

> > upset

> > about absolutely nothing that would make sense to you and I.

> >

> > Sooo...in all, thanks for this explanation. I really felt I was

> > doing

> > something wrong. Thank you for explaining to me that I'm not a bad

> > Mom for

> > not yelling when people think I should or not putting up a chart.

> > People

> > think I'm not working on her behavior and letting it just go. I

> > really

> > don't, but it's very hard to differentiate what are the meds,

> > behavior or

> > just plain confusion to her. How do you get angry for something

> > they

> > really can't help sometimes? It's definitely tough.

> >

> > Have a wonderful night and thank you again......

> >

> > , Sheridan's Mom

> >

> >

> > At 02:57 AM 7/18/2004, you wrote:

> > >Hi

> > >

> > >Sorry you're having a rough ride too. I wish I could understand why

> > Ben

> > >sometimes

> > >behaves the way he does so that I can explain things to my family,

> > but you

> > >just have a

> > >gut feeling that what they're doing is out of their control, don't

> > you,

> > >and that

> > >explanation doesn't wash! My mum is quite understanding but the

> > others

> > >find it

> > >difficult. Even my husband struggles with it but then he's not

> > around very

> > >much so

> > >he's not observing him continually.

> > >

> > >I have tried throughout the epilepsy (diagnosed June 99) to solve

> > bad

> > >behaviour

> > >problems by various means - getting cross (a no-no - Ben just

> > panics and

> > >hides),

> > >promising rewards (useless if he is angry enough), star charts (no

> > good -

> > >couldn't

> > >seem to look far enough into the future to want to change his

> > behaviour at

> > >the

> > >present moment) etc etc. In fact sometimes if you told him off he

> > looked

> > >totally

> > >humiliated and recently when we have discussed his behaviour

> > together he

> > >just keeps

> > >saying " I am such an idiot " . I think he has a really low

> > self-esteem too.

> > >Our neuro-

> > >psychologist also said something very interesting when she assessed

> > him

> > >recently:

> > >that children with frequent seizures regularly experience a loss of

> >

> > >control over their

> > >lives (ie when they are fitting) and that they often exhibit

> > controlling

> > >behaviour which

> > >can be very frustrating for people if they don't understand what's

> > going

> > >on. A good

> > >example of this is Ben might try to take an unsuitable toy with us

> > in the

> > >car, and I will

> > >say " Ben can you give that to me " . He will then put the toy down

> > somewhere

> > >instead

> > >of giving it to me. I know this seems like a ridiculously

> > unimportant

> > >incident but it's

> > >an example of understanding you want him to do something and him

> > wanting

> > >to be

> > >obedient but also wanting to control the situation by making a

> > decision

> > >himself. This

> > >would make some members of my family mad, because it looks as

> > though he is

> > >deliberately not quite doing what he is told.

> > >Ben also gets upset at extremely little things, and this can result

> > in him

> > >seeming to be

> > >quite rude to me. Some members of my family are appalled at this as

> > we have a

> > >tradition of bringing up our kids quite strictly. I have had to

> > learn to

> > >reason him

> > >through it and try not to take it too personally!

> > >

> > >Anway I won't go on any more or I'll end up writing our life

> > story.

> > >

> > >Take care

> > >Rose

> > >

> > >

> > >

> > > " The Ketogenic Diet....a realistic treatment option, NOT just a

> > last

> > > resort! "

> > >

> > > List is for parent to parent support only.

> > > It is important to get medical advice from a

> > > professional keto team!

> > > Subscribe: ketogenic-subscribe

> > > Unsubscribe:

> > ketogenic-unsubscribe

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Dear Kathy....thanks for that! I appreciate the input. It is soooo

incredibly hard with the behavior issues. Thanks for the support in

knowing we are not alone. I'm glad to hear your son is doing so

well. It's great to hear it from all the parents out there that this is

working for what seems to be most of the kids here. I do notice a

difference and it gives me something to hold on to for all of us. I know

she's been through so much....way more than I've taken, so it's hard to not

give in. Sometimes I " m just crazy mad that she did something and sometimes

it's sad to me and I get too emotional and give in. I'm really stopping

that lately because I want her to understand what is appropriate and I

think she does. Her reactions to what I say are different and I believe

the meds have a huge effect, so taking away the meds at our first

appointment means the most to me right now. Making sure I know whether

this works or not. I'm crossing my fingers!!! Thanks again ....

At 10:27 PM 7/18/2004, you wrote:

>You conversation is quite interesting to me. We've endured epilepsy,

>autism, mental delays and all....yet the number one thing that has about

> " done me in " through it all is behavior issues. It is VERY hard to

>punish, knowing full well that the behavior is coming from the disorder

>and/or treatments (yet, at other times, you have to count to 10 to save

>your child from being over punished --- from pinching their head off).

>Yet, we must force our kids to live in the " real " world which means that

>we must teach them what is appropriate and what is not. This is extra

>hard with some of our kids (like mine) because they just don't

>understand. I'm very thankful that is finally starting to

>understand consequences....but trust me, it has been a loooong time

>coming (several years) of following through on promises/threats. And

>we've had to try to make everyone in his life follow this also. This has

>been extra hard because most people " feel sorry " for him & will give in

>(and give him stickers, even though they threatened to take them away if

>he threw the toys). Well, he knows that & will " milk " it for everything

>he has got. As parents, we can't feel sorry for them, we must exercise

> " hard love " by sticking to our punishment/rewards with no exceptions.

>Yes, it is hard..... but trust me -- I can now look at in a store &

>tell him that if he wants to ride his car (battery operated) when we get

>home, he'd better stop spitting (or whatever). He understands it now &

>will change his behavior (most of the time). As I said, it has been a

>long hard battle, but now we are reaping the rewards. He knows I'm

>serious & will not change my mind if he doesn't change his behavior.

>I've been criticized by friends and family -- that I'm too hard on him

>(but they don't have a clue what all we've been through with behavior).

>We've had to learn as we go. My husband also uses the same techniques,

>so knows that if we threaten or promise......... it will happen, no

>exceptions.

> Sorry to ramble. This is what has worked with us. I hope I

>haven't sounded as if I'm preaching.... but I just wanted to share. I

>also want you to know that you are not alone in " pulling your hair out "

>over behavior issues. This area is extra hard. Hang in there!

>Kathy - mom to - keto since 02/00 (seizures 90-95% reduced), 9 yr

>old, epilepsy, autism, can drive a mean 4-wheeler!

>On Sun, 18 Jul 2004 21:09:55 -0500 Atwater

>.Atwater@...> writes:

> > Hello Rose...

> >

> > I jumped in this because I watch and read when I can. Your

> > explanation of

> > control and your issues are so incredibly familiar, that I was so

> > glad (not

> > in that sense) to hear that I wasn't alone. It sounds exactly like

> > my

> > daughter! She's almost 6 and has " periodic spasms " and the head

> > drops are

> > now making her fall to the ground. She's been on the diet for a

> > month and

> > I can't seem to get her high enough to tell if it's working. She

> > won't

> > take the fats of the cream and it makes it extremely difficult to

> > control. I now reason, beyond reasoning, to get her to where she

> > needs to

> > be...160. I need to see if it works and I believe she changes after

> > the

> > initial hospital visit for the better. When she came down to

> > moderate, her

> > head drops were hard and stronger than ever. But, when she gets

> > higher, I

> > think she seems to change and the diet works. I'm struggling daily

> > to keep

> > her in keto range and the " control " she works on having is exactly

> > the way

> > you explained it. My family makes me crazy when they just " don't

> > get

> > it " . I explain and explained for the last almost 2 years since this

> > has

> > happened that it's very difficult for her and I'm certainly not

> > happy with

> > the behavior, but we are working on it the best we can. Most of the

> > time,

> > she's so sweet...and then ---- at a snap of a finger, she's really

> > upset

> > about absolutely nothing that would make sense to you and I.

> >

> > Sooo...in all, thanks for this explanation. I really felt I was

> > doing

> > something wrong. Thank you for explaining to me that I'm not a bad

> > Mom for

> > not yelling when people think I should or not putting up a chart.

> > People

> > think I'm not working on her behavior and letting it just go. I

> > really

> > don't, but it's very hard to differentiate what are the meds,

> > behavior or

> > just plain confusion to her. How do you get angry for something

> > they

> > really can't help sometimes? It's definitely tough.

> >

> > Have a wonderful night and thank you again......

> >

> > , Sheridan's Mom

> >

> >

> > At 02:57 AM 7/18/2004, you wrote:

> > >Hi

> > >

> > >Sorry you're having a rough ride too. I wish I could understand why

> > Ben

> > >sometimes

> > >behaves the way he does so that I can explain things to my family,

> > but you

> > >just have a

> > >gut feeling that what they're doing is out of their control, don't

> > you,

> > >and that

> > >explanation doesn't wash! My mum is quite understanding but the

> > others

> > >find it

> > >difficult. Even my husband struggles with it but then he's not

> > around very

> > >much so

> > >he's not observing him continually.

> > >

> > >I have tried throughout the epilepsy (diagnosed June 99) to solve

> > bad

> > >behaviour

> > >problems by various means - getting cross (a no-no - Ben just

> > panics and

> > >hides),

> > >promising rewards (useless if he is angry enough), star charts (no

> > good -

> > >couldn't

> > >seem to look far enough into the future to want to change his

> > behaviour at

> > >the

> > >present moment) etc etc. In fact sometimes if you told him off he

> > looked

> > >totally

> > >humiliated and recently when we have discussed his behaviour

> > together he

> > >just keeps

> > >saying " I am such an idiot " . I think he has a really low

> > self-esteem too.

> > >Our neuro-

> > >psychologist also said something very interesting when she assessed

> > him

> > >recently:

> > >that children with frequent seizures regularly experience a loss of

> >

> > >control over their

> > >lives (ie when they are fitting) and that they often exhibit

> > controlling

> > >behaviour which

> > >can be very frustrating for people if they don't understand what's

> > going

> > >on. A good

> > >example of this is Ben might try to take an unsuitable toy with us

> > in the

> > >car, and I will

> > >say " Ben can you give that to me " . He will then put the toy down

> > somewhere

> > >instead

> > >of giving it to me. I know this seems like a ridiculously

> > unimportant

> > >incident but it's

> > >an example of understanding you want him to do something and him

> > wanting

> > >to be

> > >obedient but also wanting to control the situation by making a

> > decision

> > >himself. This

> > >would make some members of my family mad, because it looks as

> > though he is

> > >deliberately not quite doing what he is told.

> > >Ben also gets upset at extremely little things, and this can result

> > in him

> > >seeming to be

> > >quite rude to me. Some members of my family are appalled at this as

> > we have a

> > >tradition of bringing up our kids quite strictly. I have had to

> > learn to

> > >reason him

> > >through it and try not to take it too personally!

> > >

> > >Anway I won't go on any more or I'll end up writing our life

> > story.

> > >

> > >Take care

> > >Rose

> > >

> > >

> > >

> > > " The Ketogenic Diet....a realistic treatment option, NOT just a

> > last

> > > resort! "

> > >

> > > List is for parent to parent support only.

> > > It is important to get medical advice from a

> > > professional keto team!

> > > Subscribe: ketogenic-subscribe

> > > Unsubscribe:

> > ketogenic-unsubscribe

> > >

> > >

> > >

> > >

> > >

[Guest guest]

We're in that stage, too. Good to hear some improvements are seen down

the road. I just watched that movie about Helen Keller and her teacher

Ann Sullivan and the patience she had to have to work through every

behavior problem with tough love, and each little situation as a

teaching opportunity. And look what great results she got! BUT it took

years of perseverance and dedication. Wow! Hits home.

Thanks for writing.

, son Tyler, 3

& Rose behavior struggles

You conversation is quite interesting to me. We've endured epilepsy,

autism, mental delays and all....yet the number one thing that has about

" done me in " through it all is behavior issues. It is VERY hard to

punish, knowing full well that the behavior is coming from the disorder

and/or treatments (yet, at other times, you have to count to 10 to save

your child from being over punished --- from pinching their head off).

Yet, we must force our kids to live in the " real " world which means that

we must teach them what is appropriate and what is not. This is extra

hard with some of our kids (like mine) because they just don't

understand. I'm very thankful that is finally starting to

understand consequences....but trust me, it has been a loooong time

coming (several years) of following through on promises/threats. And

we've had to try to make everyone in his life follow this also. This

has

been extra hard because most people " feel sorry " for him & will give in

(and give him stickers, even though they threatened to take them away if

he threw the toys). Well, he knows that & will " milk " it for everything

he has got. As parents, we can't feel sorry for them, we must exercise

" hard love " by sticking to our punishment/rewards with no exceptions.

Yes, it is hard..... but trust me -- I can now look at in a store &

tell him that if he wants to ride his car (battery operated) when we get

home, he'd better stop spitting (or whatever). He understands it now &

will change his behavior (most of the time). As I said, it has been a

long hard battle, but now we are reaping the rewards. He knows I'm

serious & will not change my mind if he doesn't change his behavior.

I've been criticized by friends and family -- that I'm too hard on him

(but they don't have a clue what all we've been through with behavior).

We've had to learn as we go. My husband also uses the same techniques,

so knows that if we threaten or promise......... it will happen, no

exceptions.

Sorry to ramble. This is what has worked with us. I hope I

haven't sounded as if I'm preaching.... but I just wanted to share. I

also want you to know that you are not alone in " pulling your hair out "

over behavior issues. This area is extra hard. Hang in there!

Kathy - mom to - keto since 02/00 (seizures 90-95% reduced), 9 yr

old, epilepsy, autism, can drive a mean 4-wheeler!

On Sun, 18 Jul 2004 21:09:55 -0500 Atwater

.Atwater@...> writes:

> Hello Rose...

>

> I jumped in this because I watch and read when I can. Your

> explanation of

> control and your issues are so incredibly familiar, that I was so

> glad (not

> in that sense) to hear that I wasn't alone. It sounds exactly like

> my

> daughter! She's almost 6 and has " periodic spasms " and the head

> drops are

> now making her fall to the ground. She's been on the diet for a

> month and

> I can't seem to get her high enough to tell if it's working. She

> won't

> take the fats of the cream and it makes it extremely difficult to

> control. I now reason, beyond reasoning, to get her to where she

> needs to

> be...160. I need to see if it works and I believe she changes after

> the

> initial hospital visit for the better. When she came down to

> moderate, her

> head drops were hard and stronger than ever. But, when she gets

> higher, I

> think she seems to change and the diet works. I'm struggling daily

> to keep

> her in keto range and the " control " she works on having is exactly

> the way

> you explained it. My family makes me crazy when they just " don't

> get

> it " . I explain and explained for the last almost 2 years since this

> has

> happened that it's very difficult for her and I'm certainly not

> happy with

> the behavior, but we are working on it the best we can. Most of the

> time,

> she's so sweet...and then ---- at a snap of a finger, she's really

> upset

> about absolutely nothing that would make sense to you and I.

>

> Sooo...in all, thanks for this explanation. I really felt I was

> doing

> something wrong. Thank you for explaining to me that I'm not a bad

> Mom for

> not yelling when people think I should or not putting up a chart.

> People

> think I'm not working on her behavior and letting it just go. I

> really

> don't, but it's very hard to differentiate what are the meds,

> behavior or

> just plain confusion to her. How do you get angry for something

> they

> really can't help sometimes? It's definitely tough.

>

> Have a wonderful night and thank you again......

>

> , Sheridan's Mom

>

>

> At 02:57 AM 7/18/2004, you wrote:

> >Hi

> >

> >Sorry you're having a rough ride too. I wish I could understand why

> Ben

> >sometimes

> >behaves the way he does so that I can explain things to my family,

> but you

> >just have a

> >gut feeling that what they're doing is out of their control, don't

> you,

> >and that

> >explanation doesn't wash! My mum is quite understanding but the

> others

> >find it

> >difficult. Even my husband struggles with it but then he's not

> around very

> >much so

> >he's not observing him continually.

> >

> >I have tried throughout the epilepsy (diagnosed June 99) to solve

> bad

> >behaviour

> >problems by various means - getting cross (a no-no - Ben just

> panics and

> >hides),

> >promising rewards (useless if he is angry enough), star charts (no

> good -

> >couldn't

> >seem to look far enough into the future to want to change his

> behaviour at

> >the

> >present moment) etc etc. In fact sometimes if you told him off he

> looked

> >totally

> >humiliated and recently when we have discussed his behaviour

> together he

> >just keeps

> >saying " I am such an idiot " . I think he has a really low

> self-esteem too.

> >Our neuro-

> >psychologist also said something very interesting when she assessed

> him

> >recently:

> >that children with frequent seizures regularly experience a loss of

>

> >control over their

> >lives (ie when they are fitting) and that they often exhibit

> controlling

> >behaviour which

> >can be very frustrating for people if they don't understand what's

> going

> >on. A good

> >example of this is Ben might try to take an unsuitable toy with us

> in the

> >car, and I will

> >say " Ben can you give that to me " . He will then put the toy down

> somewhere

> >instead

> >of giving it to me. I know this seems like a ridiculously

> unimportant

> >incident but it's

> >an example of understanding you want him to do something and him

> wanting

> >to be

> >obedient but also wanting to control the situation by making a

> decision

> >himself. This

> >would make some members of my family mad, because it looks as

> though he is

> >deliberately not quite doing what he is told.

> >Ben also gets upset at extremely little things, and this can result

> in him

> >seeming to be

> >quite rude to me. Some members of my family are appalled at this as

> we have a

> >tradition of bringing up our kids quite strictly. I have had to

> learn to

> >reason him

> >through it and try not to take it too personally!

> >

> >Anway I won't go on any more or I'll end up writing our life

> story.

> >

> >Take care

> >Rose

> >

> >

> >

> > " The Ketogenic Diet....a realistic treatment option, NOT just a

> last

> > resort! "

> >

> > List is for parent to parent support only.

> > It is important to get medical advice from a

> > professional keto team!

> > Subscribe: ketogenic-subscribe

> > Unsubscribe:

> ketogenic-unsubscribe

> >

> >

> >

> >

> >