Re: How to cope with normal? (when all you know is autism...)

[Guest guest]

I sorta feel the same way. My husband and I have always said that getting our

son back would be the greatest thing but at the same time we would miss who he

is now, since the only thing that we know him to act like is autistic. Good,

bad, funny, mean, silly, loving ...it's all him, and we love him for him, if he

changes then will we miss his autism days like we yearn to see his normal days?

________________________________

From: iflow97 <iflow97@...>

Sent: Fri, October 16, 2009 2:16:00 PM

Subject: [ ] How to cope with normal? (when all you know is

autism...)

 

I was discussing this with a friend who has experience in this area. And I

thought I would post about this, because it raises a difficult dilemma.

I only have one child, a son who is now 4 1/2. He regressed after a vaccine at

age one tipped his toxic load, and all of the other vaxes between then and 18

months completed the job (including a series of flu shots). In the ensuing 3 1/2

years, all we have known is autism. We know biomed, cleaning up our son's gut,

reducing the toxic exposures in his environment etc. It took until he was 2 to

figure out what we were dealing with - then the biomed interventions, until he

was a little more than three to find our way to the AC protocol, and since then

chelation, 53 rounds. I don't know what normal is, all I know is autism, pulling

our child back out of the fog, the walking coma he has been in. We have begged

him repeatedly to use his words, connect to his environment, notice other kids

and people etc.

Several rounds ago, our son started to come back to us in the ways most parents

crave, connection to his world and others, lots of language. We envisioned only

good things from this, things like " mommy I love you " " let's play " expressing

his wishes. However, I think now of the adage: " be careful what you wish for,

you might get it " . Not to say we are unhappy, on the contrary, we are thrilled.

However- we have to learn to deal with : " Mommy, Grandma is old and slow. "

" Mommy, why is Aunt Lynn mean and fat? " How to explain, while these things may

be true, he should not say them? When presented with a lovely gfcf/sf meal: " I

want Chinese food " (which he hasn't had in over 2 years) or " I want to eat the

(non gfcf) buffalo wings Daddy has. " What to do when you say, no you can't have

those and a tantrum ensues? How to explain he can't have these? (Although

dietary infractions are not causing such a problem these days anymore) " I want a

toy now " when we enter a

store, and when we say, ok, we have to wait, the wailing, screaming, " I WANT A

TOY NOW " I used my words, give it to me! How to deal with a four year old who is

touching and doing everything you don't want him to? Before he was always

pliable, and compliant, playing quietly in the corner,never causing trouble,

which we now understand, was not normal.

We feel like we are living with a stranger, a new person we are getting to know.

But sometimes, well, I feel like screaming " shut up, just shut up, you dwarf

demon! " But how can one in good conscience tell a child to be silent, who for

years was locked in a prison of silence and from whom we begged language, any

language? I am sure it is liberating for him to finally be able to communicate

and speak to others. Yet how to strike a balance? Recently we were in a burger

joint with an arcade. We were thrilled when our son went up to a group of little

girls and introduced himself, " Hi, my name is..., I am 4 1/2 " But then he

proceeded to tell a little girl who was sitting on a motorcycle ride, " Your turn

is over, my turn now " and proceeded to shove her to the ground and hop on.

I guess these lessons of sharing and turn taking and patience, are ones parents

with NT kids must have started to deal with at 2 and 3 years old. So we are

behind the eight ball for sure. And while we are starting to see lots of

" normal " , we are by no means there yet - potty training is still a challenge,

and there are other issues, but at least we are on the road to " normal " . But it

is a difficult balancing act for sure - how to encourage the " normal " behavior,

and the language, yet set limits. I guess we felt we would chelate and all would

be well, and fall right into place eventually, that chelation was the only hard

part, guess we figured wrong...

Anyway I wanted to share this, as I think it is an important issue. Maybe some

of you out there have encountered this, and may have some insight to share as

well.

Irene

[Guest guest]

First of all, congrats on all of your hard work pulling your son from his zombie

like state (thats what we call it at my house). You have worked soooo hard!

My husband and I were just discussing this. If we get to the point you are, we

honestly don't know what we would do. It would be like adopting another child

after the one we had for so long died. Our son regressed at 1 year as well and

(as I like to say) " I dropped kicked him into autism " with his flu vaccs, other

vaccs and of course stopping breast feeding. Guilt aside, he changed and we are

working hard to help him. Even now during this fight, we wonder what it is like

to worry about the NT stuff that our friends worry about. It seems like just

keeping a kid alive and happy is a huge job in itself, let alone the all-nighter

ASD google searching, every penny used for treatments, speech, OT, you name it.

Even his baths are filtered so he can't bath at grammas. You know the drill. We

aren't feeling sorry for ourselves, it is just a thought, what will it be like

to have a kid that asks us questions? Demands food, tells people they are " fat "

or " you stink " all the things my friends 3 year olds say.

All I can say is log on to some NT sites about tantrums because they (according

to all of my friends) are normal. Get ready for the 4 hour sentence that my

friends 5 year old said the other day. I found myself thinking, " really? she

just keeps talking and never shuts up? WOW! " It is a different world.

As far as the food goes, my sister and I have had milk allergies our entire life

and we were always the weird kids that had milk free cookies in class, or rice

milk in a weird box etc... Good news is, lots of people eat healthier these days

so the special diet probably won't be made fun of by other kids.

When he wants something that might put him back into symptoms? Just put your

foot down and difficult as it is, let him tantrum. Lots of kids can't have those

wings so just tell him he can't have it. I know, easy for you to say, we are not

in your shoes. But I do have a pair like yours and if you were able to make it

thru ASD then some NT tantrums... you can handle that!

Good luck and enjoy your hard work. We will start chelation in a few months and

can't wait to see what it brings. The diet and supplements have helped a ton.

Maybe take notes of your experiences and write a book about raising a NT child

after the recovery.

Hugs,

>

> I was discussing this with a friend who has experience in this area. And I

thought I would post about this, because it raises a difficult dilemma.

>

> I only have one child, a son who is now 4 1/2. He regressed after a vaccine

at age one tipped his toxic load, and all of the other vaxes between then and 18

months completed the job (including a series of flu shots). In the ensuing 3

1/2 years, all we have known is autism. We know biomed, cleaning up our son's

gut, reducing the toxic exposures in his environment etc. It took until he was

2 to figure out what we were dealing with - then the biomed interventions, until

he was a little more than three to find our way to the AC protocol, and since

then chelation, 53 rounds. I don't know what normal is, all I know is autism,

pulling our child back out of the fog, the walking coma he has been in. We have

begged him repeatedly to use his words, connect to his environment, notice other

kids and people etc.

>

> Several rounds ago, our son started to come back to us in the ways most

parents crave, connection to his world and others, lots of language. We

envisioned only good things from this, things like " mommy I love you " " let's

play " expressing his wishes. However, I think now of the adage: " be careful

what you wish for, you might get it " . Not to say we are unhappy, on the

contrary, we are thrilled. However- we have to learn to deal with : " Mommy,

Grandma is old and slow. " " Mommy, why is Aunt Lynn mean and fat? " How to

explain, while these things may be true, he should not say them? When presented

with a lovely gfcf/sf meal: " I want Chinese food " (which he hasn't had in over

2 years) or " I want to eat the (non gfcf) buffalo wings Daddy has. " What to do

when you say, no you can't have those and a tantrum ensues? How to explain he

can't have these? (Although dietary infractions are not causing such a problem

these days anymore) " I want a toy now " when we enter a store, and when we say,

ok, we have to wait, the wailing, screaming, " I WANT A TOY NOW " I used my words,

give it to me! How to deal with a four year old who is touching and doing

everything you don't want him to? Before he was always pliable, and compliant,

playing quietly in the corner,never causing trouble, which we now understand,

was not normal.

>

> We feel like we are living with a stranger, a new person we are getting to

know. But sometimes, well, I feel like screaming " shut up, just shut up, you

dwarf demon! " But how can one in good conscience tell a child to be silent, who

for years was locked in a prison of silence and from whom we begged language,

any language? I am sure it is liberating for him to finally be able to

communicate and speak to others. Yet how to strike a balance? Recently we were

in a burger joint with an arcade. We were thrilled when our son went up to a

group of little girls and introduced himself, " Hi, my name is..., I am 4 1/2 "

But then he proceeded to tell a little girl who was sitting on a motorcycle

ride, " Your turn is over, my turn now " and proceeded to shove her to the ground

and hop on.

>

> I guess these lessons of sharing and turn taking and patience, are ones

parents with NT kids must have started to deal with at 2 and 3 years old. So we

are behind the eight ball for sure. And while we are starting to see lots of

" normal " , we are by no means there yet - potty training is still a challenge,

and there are other issues, but at least we are on the road to " normal " . But it

is a difficult balancing act for sure - how to encourage the " normal " behavior,

and the language, yet set limits. I guess we felt we would chelate and all would

be well, and fall right into place eventually, that chelation was the only hard

part, guess we figured wrong...

>

> Anyway I wanted to share this, as I think it is an important issue. Maybe

some of you out there have encountered this, and may have some insight to share

as well.

>

> Irene

>

[Guest guest]

In front of each jumped hurdle is another hurdle.

You honestly don't know what you would be dealing with had you not started to

intervene. Could have been violence or self-harm or severe illness. You just

don't know.

It is all so very hard. I went through this phase with my son as he became more

verbal. He has said some embarassing things and would scream and cry as the

birthday boy opened presents or blew out candles on the cake. It was horrible

and honestly got me more looks and stares then when he was my cute little 2 year

old boy involved only in his own world.

I have found that the good things have stayed: the smile and the cuddliness and

the charm he had all along is still there. He really is the same boy; only now

with a real future. I could always tell he had a sense of humor and as he

recovers it is really showing itself.

This will soon become your normal and then it will change again and you'll have

a new normal. Like you said, most parents (Autism or not) deal with these

stages but we just get it later when to others see it is inappropriate and to us

just down-right embarassing (and sometimes cute)! It might take longer to

outgrow these phases because his brain is still working to make connections lost

and there are a lot of milestones unmet. It also might mean he reaches

milestones in an atypical order.

I remember the first time my son took a toy back after another child took it

from him. I had to contain my joy! And then when he hit his sister after she

teased him I wanted to cheer. These are good things, I tell myself.

Hang in there.

Pam

>

> I was discussing this with a friend who has experience in this area. And I

thought I would post about this, because it raises a difficult dilemma.

>

> I only have one child, a son who is now 4 1/2. He regressed after a vaccine

at age one tipped his toxic load, and all of the other vaxes between then and 18

months completed the job (including a series of flu shots). In the ensuing 3

1/2 years, all we have known is autism. We know biomed, cleaning up our son's

gut, reducing the toxic exposures in his environment etc. It took until he was

2 to figure out what we were dealing with - then the biomed interventions, until

he was a little more than three to find our way to the AC protocol, and since

then chelation, 53 rounds. I don't know what normal is, all I know is autism,

pulling our child back out of the fog, the walking coma he has been in. We have

begged him repeatedly to use his words, connect to his environment, notice other

kids and people etc.

>

> Several rounds ago, our son started to come back to us in the ways most

parents crave, connection to his world and others, lots of language. We

envisioned only good things from this, things like " mommy I love you " " let's

play " expressing his wishes. However, I think now of the adage: " be careful

what you wish for, you might get it " . Not to say we are unhappy, on the

contrary, we are thrilled. However- we have to learn to deal with : " Mommy,

Grandma is old and slow. " " Mommy, why is Aunt Lynn mean and fat? " How to

explain, while these things may be true, he should not say them? When presented

with a lovely gfcf/sf meal: " I want Chinese food " (which he hasn't had in over

2 years) or " I want to eat the (non gfcf) buffalo wings Daddy has. " What to do

when you say, no you can't have those and a tantrum ensues? How to explain he

can't have these? (Although dietary infractions are not causing such a problem

these days anymore) " I want a toy now " when we enter a store, and when we say,

ok, we have to wait, the wailing, screaming, " I WANT A TOY NOW " I used my words,

give it to me! How to deal with a four year old who is touching and doing

everything you don't want him to? Before he was always pliable, and compliant,

playing quietly in the corner,never causing trouble, which we now understand,

was not normal.

>

> We feel like we are living with a stranger, a new person we are getting to

know. But sometimes, well, I feel like screaming " shut up, just shut up, you

dwarf demon! " But how can one in good conscience tell a child to be silent, who

for years was locked in a prison of silence and from whom we begged language,

any language? I am sure it is liberating for him to finally be able to

communicate and speak to others. Yet how to strike a balance? Recently we were

in a burger joint with an arcade. We were thrilled when our son went up to a

group of little girls and introduced himself, " Hi, my name is..., I am 4 1/2 "

But then he proceeded to tell a little girl who was sitting on a motorcycle

ride, " Your turn is over, my turn now " and proceeded to shove her to the ground

and hop on.

>

> I guess these lessons of sharing and turn taking and patience, are ones

parents with NT kids must have started to deal with at 2 and 3 years old. So we

are behind the eight ball for sure. And while we are starting to see lots of

" normal " , we are by no means there yet - potty training is still a challenge,

and there are other issues, but at least we are on the road to " normal " . But it

is a difficult balancing act for sure - how to encourage the " normal " behavior,

and the language, yet set limits. I guess we felt we would chelate and all would

be well, and fall right into place eventually, that chelation was the only hard

part, guess we figured wrong...

>

> Anyway I wanted to share this, as I think it is an important issue. Maybe

some of you out there have encountered this, and may have some insight to share

as well.

>

> Irene

>

[Guest guest]

I'm so glad to hear that the biomed is recovering him. Now he just has to " go

back " and learn the subtleties of social interaction that he missed while too

ill to interact/function. I would suggest looking into finding a good behavioral

therapist to work and look into RDI, as well.

>

> I was discussing this with a friend who has experience in this area. And I

thought I would post about this, because it raises a difficult dilemma.

>

> I only have one child, a son who is now 4 1/2. He regressed after a vaccine

at age one tipped his toxic load, and all of the other vaxes between then and 18

months completed the job (including a series of flu shots). In the ensuing 3

1/2 years, all we have known is autism. We know biomed, cleaning up our son's

gut, reducing the toxic exposures in his environment etc. It took until he was

2 to figure out what we were dealing with - then the biomed interventions, until

he was a little more than three to find our way to the AC protocol, and since

then chelation, 53 rounds. I don't know what normal is, all I know is autism,

pulling our child back out of the fog, the walking coma he has been in. We have

begged him repeatedly to use his words, connect to his environment, notice other

kids and people etc.

>

> Several rounds ago, our son started to come back to us in the ways most

parents crave, connection to his world and others, lots of language. We

envisioned only good things from this, things like " mommy I love you " " let's

play " expressing his wishes. However, I think now of the adage: " be careful

what you wish for, you might get it " . Not to say we are unhappy, on the

contrary, we are thrilled. However- we have to learn to deal with : " Mommy,

Grandma is old and slow. " " Mommy, why is Aunt Lynn mean and fat? " How to

explain, while these things may be true, he should not say them? When presented

with a lovely gfcf/sf meal: " I want Chinese food " (which he hasn't had in over

2 years) or " I want to eat the (non gfcf) buffalo wings Daddy has. " What to do

when you say, no you can't have those and a tantrum ensues? How to explain he

can't have these? (Although dietary infractions are not causing such a problem

these days anymore) " I want a toy now " when we enter a store, and when we say,

ok, we have to wait, the wailing, screaming, " I WANT A TOY NOW " I used my words,

give it to me! How to deal with a four year old who is touching and doing

everything you don't want him to? Before he was always pliable, and compliant,

playing quietly in the corner,never causing trouble, which we now understand,

was not normal.

>

> We feel like we are living with a stranger, a new person we are getting to

know. But sometimes, well, I feel like screaming " shut up, just shut up, you

dwarf demon! " But how can one in good conscience tell a child to be silent, who

for years was locked in a prison of silence and from whom we begged language,

any language? I am sure it is liberating for him to finally be able to

communicate and speak to others. Yet how to strike a balance? Recently we were

in a burger joint with an arcade. We were thrilled when our son went up to a

group of little girls and introduced himself, " Hi, my name is..., I am 4 1/2 "

But then he proceeded to tell a little girl who was sitting on a motorcycle

ride, " Your turn is over, my turn now " and proceeded to shove her to the ground

and hop on.

>

> I guess these lessons of sharing and turn taking and patience, are ones

parents with NT kids must have started to deal with at 2 and 3 years old. So we

are behind the eight ball for sure. And while we are starting to see lots of

" normal " , we are by no means there yet - potty training is still a challenge,

and there are other issues, but at least we are on the road to " normal " . But it

is a difficult balancing act for sure - how to encourage the " normal " behavior,

and the language, yet set limits. I guess we felt we would chelate and all would

be well, and fall right into place eventually, that chelation was the only hard

part, guess we figured wrong...

>

> Anyway I wanted to share this, as I think it is an important issue. Maybe

some of you out there have encountered this, and may have some insight to share

as well.

>

> Irene

>

[Guest guest]

As I was reading I felt like I know exactly what this person means. And of

course, my husband thought there was something wrong with me as I was laughing

so loud about the " dwarf demon " I'm proud of you for putting that to words.

Its hard to admit we sometimes can have our own feelings about our kids-good for

you!

ABA therapy (Applied Behavioral Analysis) absolutely saved us. It is behavioral

therapy. The difference in my son is/was so remarkable. His behavior is soo

improved. If you have that available to you or in your area I would check it

out.

Best of Luck to you and your dwarf demon

PS: A SPECT scan may be helpful. We just had one and it showed that one of the

areas with issues was the frontal lobe-the area that is responsible for

censorship, inhibition, etc....the area that in someone without issue- would be

able to think about not saying or doing certain things before hand. Another

words-he might not be able to help it.

>

> I sorta feel the same way. My husband and I have always said that getting our

son back would be the greatest thing but at the same time we would miss who he

is now, since the only thing that we know him to act like is autistic. Good,

bad, funny, mean, silly, loving ...it's all him, and we love him for him, if he

changes then will we miss his autism days like we yearn to see his normal days?

>

>

>

>

> ________________________________

> From: iflow97 <iflow97@...>

>

> Sent: Fri, October 16, 2009 2:16:00 PM

> Subject: [ ] How to cope with normal? (when all you know is

autism...)

>

>  

> I was discussing this with a friend who has experience in this area. And I

thought I would post about this, because it raises a difficult dilemma.

>

> I only have one child, a son who is now 4 1/2. He regressed after a vaccine at

age one tipped his toxic load, and all of the other vaxes between then and 18

months completed the job (including a series of flu shots). In the ensuing 3 1/2

years, all we have known is autism. We know biomed, cleaning up our son's gut,

reducing the toxic exposures in his environment etc. It took until he was 2 to

figure out what we were dealing with - then the biomed interventions, until he

was a little more than three to find our way to the AC protocol, and since then

chelation, 53 rounds. I don't know what normal is, all I know is autism, pulling

our child back out of the fog, the walking coma he has been in. We have begged

him repeatedly to use his words, connect to his environment, notice other kids

and people etc.

>

> Several rounds ago, our son started to come back to us in the ways most

parents crave, connection to his world and others, lots of language. We

envisioned only good things from this, things like " mommy I love you " " let's

play " expressing his wishes. However, I think now of the adage: " be careful what

you wish for, you might get it " . Not to say we are unhappy, on the contrary, we

are thrilled. However- we have to learn to deal with : " Mommy, Grandma is old

and slow. " " Mommy, why is Aunt Lynn mean and fat? " How to explain, while these

things may be true, he should not say them? When presented with a lovely gfcf/sf

meal: " I want Chinese food " (which he hasn't had in over 2 years) or " I want to

eat the (non gfcf) buffalo wings Daddy has. " What to do when you say, no you

can't have those and a tantrum ensues? How to explain he can't have these?

(Although dietary infractions are not causing such a problem these days anymore)

" I want a toy now " when we enter a

> store, and when we say, ok, we have to wait, the wailing, screaming, " I WANT

A TOY NOW " I used my words, give it to me! How to deal with a four year old who

is touching and doing everything you don't want him to? Before he was always

pliable, and compliant, playing quietly in the corner,never causing trouble,

which we now understand, was not normal.

>

> We feel like we are living with a stranger, a new person we are getting to

know. But sometimes, well, I feel like screaming " shut up, just shut up, you

dwarf demon! " But how can one in good conscience tell a child to be silent, who

for years was locked in a prison of silence and from whom we begged language,

any language? I am sure it is liberating for him to finally be able to

communicate and speak to others. Yet how to strike a balance? Recently we were

in a burger joint with an arcade. We were thrilled when our son went up to a

group of little girls and introduced himself, " Hi, my name is..., I am 4 1/2 "

But then he proceeded to tell a little girl who was sitting on a motorcycle

ride, " Your turn is over, my turn now " and proceeded to shove her to the ground

and hop on.

>

> I guess these lessons of sharing and turn taking and patience, are ones

parents with NT kids must have started to deal with at 2 and 3 years old. So we

are behind the eight ball for sure. And while we are starting to see lots of

" normal " , we are by no means there yet - potty training is still a challenge,

and there are other issues, but at least we are on the road to " normal " . But it

is a difficult balancing act for sure - how to encourage the " normal " behavior,

and the language, yet set limits. I guess we felt we would chelate and all would

be well, and fall right into place eventually, that chelation was the only hard

part, guess we figured wrong...

>

> Anyway I wanted to share this, as I think it is an important issue. Maybe some

of you out there have encountered this, and may have some insight to share as

well.

>

> Irene

>

>

>

>

>

>

>

>

[Guest guest]

>

>

" I want a toy now " when we enter a store, and when we say, ok, we have to

wait, the wailing, screaming, " I WANT A TOY NOW " I used my words, give it to me!

>

When I first pulled my two sons out of public school, the first several months

they fought a lot and acted out a lot. I felt they were, in part, venting from

all the stress they had kept inside while in school. I did a lot of trying to

separate them (rather than punish them), trying to foster good communication and

helping them see there were two sides to the issue, and trying to not let this

become a new problem -- ie not let them just get away with bad behavior. I

would assume that an overly compliant child who had been unable to express

himself and is now doing better would also have some " coming out " type issues of

the same sort -- the chance to finally let out some of the high levels of stress

and express frustrations he previously felt but couldn't tell you about.

It sounds like one issue your child has is that language is a form of power he

was previously denied and he is now overestimating how much power that is

supposed to convey to him. ( " I used my words, give it to me! " ) It will take

some time for him to learn the new boundaries that go along with his new skill

set and that the power of speech, while amazing, does not confer god-like power.

One thing that was useful in my house was doing what I call 'keeping it a

child-sized problem'. In other words, just because the child is having a

tantrum does not mean the situation merits a strong emotional response from the

parent. Kids who see mom and dad getting all bent out of shape interpret that

as an indication that this REALLY is a BIG deal since mom and dad -- the all

powerful beings who gave me life -- can't cope. This goes hand in hand with

working first and foremost on me (rather than on my child) so I can model good

judgment about what really is a crisis and what is just something a child will

have a tantrum over but it's not really that big a deal. If I'm reacting really

strongly and it really isn't that big a deal, what's MY problem?? (Hint: It's

often emotional baggage from my own childhood and this is now a prime

opportunity to sort that out and get over some of it.)

Also, I was always fairly thick-skinned about my kids making socially

unacceptable remarks about someone's age, weight, etc. I think that comes with

the territory to some extent and probably all kids do that to some degree, at

one time or another. In my view, if some adult is going to get really bent out

of shape about the social faux pas of a 4 year old, they have a personal

problem. Too bad, so sad. If they are severely dysfunctional over the whole

issue, hmmm, might be time to stop spending so much time with this dysfunctional

adult as I have plenty of problems of my own -- problems I consider " real

problems " , as opposed to someone's neurotic need to not have another human being

point out the obvious fact that they are old or not thin. I have a certain

amount of difficulty dealing with people who are so totally in denial in that

way. I just don't get the American hang-up about age (or, to a large degree,

weight either). It does not compute. Older people are often wonderful fonts of

wisdom and often have more mellow personalities. I have had a lot of friends

over the years who are older than I am. I like myself more now at age 44 than I

ever have and my life is better than it has ever been. With getting healthier,

my body is no longer continuously torturing me. It's much nicer to me than when

I was younger and " prettier " . Plenty of men have failing eyesight and seem to

think I am attractive. :-D It's all good. (Actually, I got the most positive

male attention when I was quite heavy. And I have read a few articles which

make me think that being too " beautiful " may be detrimental to one's social life

because it intimidates people and prevents them from approaching you. All the

changes I've gone through have been fascinating in terms of subjective

experience versus what people think I ought to feel about myself based on looks

-- or any other single determiner.)

I also think having extremely clear boundaries helps enormously. I used to tell

my sons things like " Mom has a headache and feels like crap. So today would be a

really good day to finally become an abused child because I can't take that

much. If you just MUST bounce, please do it at least 10 feet away from me or I

may snap. " Some of the value here: Bouncing isn't " bad behavior " but driving

mom crazy is. If mom is upset, it's not all you. It's okay to try to meet your

own needs, you just need to try to do it in a way that doesn't impose harshly on

someone else.

I'm sure I have more thoughts on the topic but I woke up god-awful early and I

am finally feeling tired. Maybe I can go back to sleep. (I am having a healing

crisis because we did some clean up of some contaminants Wednesday and it is

hitting me kind of hard this morning -- which we knew it would due to " the 48

hour rule " .)

Good luck with this.

Michele

http://www.healthgazelle.com

http://www.kidslikemine.com

http://www.solanorail.com

[Guest guest]

> Several rounds ago, our son started to come back to us in the ways most

parents crave, connection to his world and others, lots of language. We

envisioned only good things from this, things like " mommy I love you " " let's

play " expressing his wishes. However, I think now of the adage: " be careful

what you wish for, you might get it " . Not to say we are unhappy, on the

contrary, we are thrilled. However- we have to learn to deal with : " Mommy,

Grandma is old and slow. " " Mommy, why is Aunt Lynn mean and fat? " How to

explain, while these things may be true, he should not say them?

Congrats on the early/quick improvements! I am at this stage right now also,

altho my #2 and #3 are age 12 and 13. They started this stage about a year ago.

Your son is still " excusable " for these social missteps, because he is only 4.

I treat my kids like NT kids. If they say something inappropriate, I call them

aside, let them know exactly why it is inappropriate, and give them alternatives

if there are some available [like for example, using the word " large " or " big "

instead of " fat " ]. Sometimes I just tell them we don't say things like that out

loud, and then I tell them about the " if you can't say something nice.... "

policy.

>>When presented with a lovely gfcf/sf meal: " I want Chinese food " (which he

hasn't had in over 2 years) or " I want to eat the (non gfcf) buffalo wings Daddy

has. " What to do when you say, no you can't have those and a tantrum ensues?

How to explain he can't have these? (Although dietary infractions are not

causing such a problem these days anymore)

My kids have not had food issues for many years, so I don't have this problem.

However, if I say " no " to something, and a tantrum ensued, then they would be

appropriately disciplined. If it was regarding a meal, for example, I would end

the meal and they would get no more food until the next meal.

>> " I want a toy now " when we enter a store, and when we say, ok, we have to

wait, the wailing, screaming, " I WANT A TOY NOW " I used my words, give it to me!

I say " thank you for using your words, that was very good. However, just

because you used your words, does not mean you always get what you want. And,

if you start screaming, you will not only NOT get what you want, you will also

get XX punishment for screaming. "

> We feel like we are living with a stranger, a new person we are getting to

know. But sometimes, well, I feel like screaming " shut up, just shut up, you

dwarf demon! " But how can one in good conscience tell a child to be silent, who

for years was locked in a prison of silence and from whom we begged language,

any language?

I tell my kids to be quiet quite often. It does feel VERY strange LOL, since #2

did not even say his first word until he was 6. But he does need to learn when

it is appropriate to be quiet. For example, when we go to church, I always tell

him " we are going to church now, you need to be a big boy and be quiet " .

>>But then he proceeded to tell a little girl who was sitting on a motorcycle

ride, " Your turn is over, my turn now " and proceeded to shove her to the ground

and hop on.

Something similar has happened here. I told my son " it is not your job to

decide when a turn is over, and we do NOT push other people. Therefore, you do

NOT get a turn at all. " Then we either continue what we were doing, minus the

activity that got him in trouble, or we go home.

I am very strict with significantly undesirable behavior, like screaming,

pushing, and hitting. I have been strict for many years, so my kids only need

ONE instance of discipline in this area, and it never happens again.

> I guess these lessons of sharing and turn taking and patience, are ones

parents with NT kids must have started to deal with at 2 and 3 years old.

Yes, and it is much easier to discipline them when they are younger, but you

still need to do it. Keep at it, your son is only 4, he will pick up relatively

quickly. When a 12yo pushes or hits, it causes a lot more problems.

I know where you are coming from. But congratulations on getting there!

Dana

[Guest guest]

I am the parent of a child with asperger's. I just want to say that that you

are having such fabulous progress, what a blessing. I realize your son's

progress creates new challenges. But I just want to point out a couple of

things I have noticed.

When kids start out with a more severe, non-verbal autism, I have noticed that

as they improve it is as if the diagnosis changes from autism to asperger's.

Now they can talk, but still don't have a very good social understanding, poor

impulse control, tantrums, etc. Thus they can say, " why is she fat, " and things

like that. Those types of behavior are very in synch with an asperger's

diagnosis.

The second thing I noticed with my own child, and also noticed a few others

saying this as well, that as their child improves, they suddenly seem to " know "

things that they never practiced before. It was as if they heard the lessons

during the formative years, understood them, but were never able to act upon

them until now. It is all those social things we all take for granted, but kids

with asperger's cannot grasp.

So you said you felt " behind the 8 ball " with your son's ability to share and

understand social things, but it could be that what you are experiencing is

still quite a bit of mercury interfering. And after more rounds he may suddenly

seem to " get " things that before not only escaped him but were in fact

unteachable because the mercury wouldn't let him " hear " it.

I just want to encourage you because it can only go up from here. Too bad the

road is so long and difficult, but as time goes on that too will improve.

And just for completeness, I haven't actually started chelating my daughter yet.

I did all other kinds of biomed interventions that have helped tremendously and

we have made lots of improvements. But we are hopefully going to start our

first round soon.

> >

> > I sorta feel the same way. My husband and I have always said that getting

our son back would be the greatest thing but at the same time we would miss who

he is now, since the only thing that we know him to act like is autistic. Good,

bad, funny, mean, silly, loving ...it's all him, and we love him for him, if he

changes then will we miss his autism days like we yearn to see his normal days?

> >

> >

> >

> >

> > ________________________________

> > From: iflow97 <iflow97@>

> >

> > Sent: Fri, October 16, 2009 2:16:00 PM

> > Subject: [ ] How to cope with normal? (when all you know is

autism...)

> >

> >  

> > I was discussing this with a friend who has experience in this area. And I

thought I would post about this, because it raises a difficult dilemma.

> >

> > I only have one child, a son who is now 4 1/2. He regressed after a vaccine

at age one tipped his toxic load, and all of the other vaxes between then and 18

months completed the job (including a series of flu shots). In the ensuing 3 1/2

years, all we have known is autism. We know biomed, cleaning up our son's gut,

reducing the toxic exposures in his environment etc. It took until he was 2 to

figure out what we were dealing with - then the biomed interventions, until he

was a little more than three to find our way to the AC protocol, and since then

chelation, 53 rounds. I don't know what normal is, all I know is autism, pulling

our child back out of the fog, the walking coma he has been in. We have begged

him repeatedly to use his words, connect to his environment, notice other kids

and people etc.

> >

> > Several rounds ago, our son started to come back to us in the ways most

parents crave, connection to his world and others, lots of language. We

envisioned only good things from this, things like " mommy I love you " " let's

play " expressing his wishes. However, I think now of the adage: " be careful what

you wish for, you might get it " . Not to say we are unhappy, on the contrary, we

are thrilled. However- we have to learn to deal with : " Mommy, Grandma is old

and slow. " " Mommy, why is Aunt Lynn mean and fat? " How to explain, while these

things may be true, he should not say them? When presented with a lovely gfcf/sf

meal: " I want Chinese food " (which he hasn't had in over 2 years) or " I want to

eat the (non gfcf) buffalo wings Daddy has. " What to do when you say, no you

can't have those and a tantrum ensues? How to explain he can't have these?

(Although dietary infractions are not causing such a problem these days anymore)

" I want a toy now " when we enter a

> > store, and when we say, ok, we have to wait, the wailing, screaming, " I

WANT A TOY NOW " I used my words, give it to me! How to deal with a four year old

who is touching and doing everything you don't want him to? Before he was always

pliable, and compliant, playing quietly in the corner,never causing trouble,

which we now understand, was not normal.

> >

> > We feel like we are living with a stranger, a new person we are getting to

know. But sometimes, well, I feel like screaming " shut up, just shut up, you

dwarf demon! " But how can one in good conscience tell a child to be silent, who

for years was locked in a prison of silence and from whom we begged language,

any language? I am sure it is liberating for him to finally be able to

communicate and speak to others. Yet how to strike a balance? Recently we were

in a burger joint with an arcade. We were thrilled when our son went up to a

group of little girls and introduced himself, " Hi, my name is..., I am 4 1/2 "

But then he proceeded to tell a little girl who was sitting on a motorcycle

ride, " Your turn is over, my turn now " and proceeded to shove her to the ground

and hop on.

> >

> > I guess these lessons of sharing and turn taking and patience, are ones

parents with NT kids must have started to deal with at 2 and 3 years old. So we

are behind the eight ball for sure. And while we are starting to see lots of

" normal " , we are by no means there yet - potty training is still a challenge,

and there are other issues, but at least we are on the road to " normal " . But it

is a difficult balancing act for sure - how to encourage the " normal " behavior,

and the language, yet set limits. I guess we felt we would chelate and all would

be well, and fall right into place eventually, that chelation was the only hard

part, guess we figured wrong...

> >

> > Anyway I wanted to share this, as I think it is an important issue. Maybe

some of you out there have encountered this, and may have some insight to share

as well.

> >

> > Irene

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

PS: A SPECT scan may be helpful. We just had one and it showed that one of the

areas with issues was the frontal lobe-the area that is responsible for

censorship, inhibition, etc....the area that in someone without issue- would be

able to think about not saying or doing certain things before hand. Another

words-he might not be able to help it.

*We just had similar spect results. Any idea what you could do about it? We are

currently working on the seizure issues found on the spect scan.