RE: Mc Carthy book and The Cure

May 20, 2009

Hi marcia,

Thank you for your lovely post,can i ask what age your son started to

speak,my son is now 5 and still nonverbal.we have been doing biomed since he

was 2.5,and he is in ABA school since 3.5,one thing we havent really tackled

are Viral issues,because we

mistakenly listened to two different DANS who never mentioned viral

issues,all i feel now is guilt at the wasted time,we are living in Ireland

and are determined to regain our little man back

On Wed, May 20, 2009 at 3:29 PM, Marcia Hinds <hindssite@...> wrote:

>

> When my son was seven I thought I " cured " him also. I even wrote an article

> to that effect at the time and had it published in the Autism Society of

> America. Like , I had only good intentions and truly thought my son

> was " cured. " But what I didn't realize was that even though he was so much

> better, he had a long way to go. Seeing the difference from the weird and

> bizarre behavior he used to exhibit made me think he was better, and he

> was.

> It was like night and day, but he wasn't done yet. I'm not sure we are

> ever done teaching any of our kids (normal or afflicted). The social,

> reading comprehension and friendships were the last to come. His first

> " true " friendships that I didn't help facilitate did not happen until he

> went away to college.

>

> In my opinion 's child probably has a way to go and is not fully

> recovered. Sometimes you don't realize the true deficits in these kids

> until they are older and have more complex social issues to deal with. But

> it sounds like Evan is doing quite well and on his way. And aren't we all

> grateful for all the attention she has brought to help all of our kids? By

> reading her book you can tell has been in the trenches like the rest

> of us. Her books are comforting in that it makes the reader feel not so

> alone in this overwhelming mission to help our children.

>

> My son is twenty and recovered. I determine recovery as being

> indistinguishable from his peers. Mine is a little nerdy and a little Bill

> Gatesish, but no one who ever guess he was once severely afflicted with

> autism. If someone would have told me when he was four and in the third

> percentile for speech that some day he be interesting to talk to, knows

> more

> about the world than anyone I know and be able to make me laugh

> uncontrollably, I wouldn't have believed them. But what makes me most proud

> is that my son is a good person with good values. He helps others and has

> the empathy the doctor's said would never be possible for someone with

> autism.

>

> He was just recognized for his community service by Hillel and awarded a

> congressional service award by a congressman in front of 250 people. There

> were only four students getting recognition and he was the only one from

> his

> university. I was busting at the seams because I was so proud of him and

> all he has accomplished. When he was first diagnosed, I was just hoping for

> an independent life not in a group home or institution. But he surpassed

> all my hopes and dreams. He will have a normal life thanks to Dr. G's

> treatment and the ABA we did over the years.

>

> When was first diagnosed I was told he would never be " normal, " and

> would probably need to be institutionalized. As a result of medical,

> behavioral and educational interventions, he now attends a major university

> on an academic scholarship. He is president of the Jewish Student

> Association and recently joined Sigma Chi Fraternity. He maintains a 3.8

> GPA, drives, goes to parties, and has an active social life.

>

> If you wave a magic wand and make these kids bodies healthy, you still have

> to catch them up on all the academic, social and life skills they missed

> along the way. I ache for the parents whose children are not recovered like

> mine. There are some parents who work tirelessly, do the medical and

> behavioral interventions and their children's immune systems are too

> compromised to have complete recovery.

>

> But the kids I hurt the most for are the ones whose parents haven't given

> them a shot by trying the medical or the ones who are afraid of the ABA

> because it might hurt their children's self esteem. And don't even get me

> started on the parents who do get the ABA, but the ABA providers are trying

> to make a fast buck and are not doing it correctly.

>

> It saddens me that some kids they are just too old when they start the

> medical and recovery is extremely difficult (but possible). Even if their

> children get better physically, the inappropriate behaviors are ingrained.

> For years these kids have done these behaviors as a way to survive this

> hell. And the older the child is after they start medically, the more they

> need to learn in language, social skills and appropriate behavior.

>

> Then there are the parents who would do anything to avoid a meltdown. I

> used to be one of them, it was much easier in the short term to give the

> kid

> what they wanted, but was not what was best for the child. These parents do

> not treat their children like " normal " kids and subconsciously do anything

> to make sure there are no outbursts. Our kids can be very well-behaved if

> we give in to them and don't demand that they join up with the rest of the

> world.

>

> My child was well-behaved before I began ABA. He only became a terror after

> we started ABA and demanded things of him. They hold on tight to their

> obsessive behaviors and children who were never violent before often become

> so for a short period of time after starting ABA. I didn't even realize how

> many things I did to avoid upsetting him.

>

> Most of the time it was bargaining. If you do this, then this will happen.

> But you can't bargain with terrorists and that is what our children become

> if we let them. But you have to shake up their world and not tolerate the

> obsessive behaviors. Unfortunately the real world is not the same all the

> time, and as they get older they are no longer little and cute.

>

> Over the years I have talked to thousands of parents who are well meaning

> in

> nature and would do anything to help their kids. Unfortunately those of us

> who have lived this know just how draining these kids are and how stubborn

> the parent needs to be to make the child do the right thing. Teaching them

> everything in the beginning is such a overwhelming task. There was so much

> to learn sometimes I didn't know where to start. In time I learned to

> concentrate on one behavior at a time until it is mastered and then move on

> to the next. It was kind of like bringing a stroke victim back.

>

> It takes an unbelievably strong parent to keep going when you get no

> feedback from your child that they are progressing. Recovery is a long

> process and the hardest thing I ever had to do was to keep talking and

> working with a child who did not look like he responded at all to anything.

> It was not until much later when he was significantly better that I

> realized

> he was learning back then. Hang in there and don't give up on your child,

> no matter how hard they try to make you.

>

> And if you haven't already done so, get your child to Dr. Goldberg in

> Tarzana, CA or Dr. Bruce in Corpus Christi, Texas.

>

> Marcia

>

May 20, 2009

Dear Marcia,

Thank you for the compelling insights you shared, and your story of hope and

encouragement. My son first started with siezures at 6 months of age. He was

diagnosed with Infantile Spasms. The siezures were severe and every day, such

that by the summer of 2006 we were so afraid he would die that we took him for a

surgical eval at UCLA. He was not a surgical candidate, as his siezures had

generalized. But we found an atlas orthogonal chiropractic specialist who took

xrays in the x, y, and z planes and found that his atlas was off by 6 degrees

and 9 degrees. After receiving treatments 2 x per week, my son was siezure

free-as long as his atlas was in alignment. I continue to take him there 2x per

week. But why was he so sensitive to his atlas moving and the response in his

brain stem? When we took him to Dr. Dogris in Mammoth, CA, he told us it looked

like he had a brain infection. Roff was only diagnosed with Autism at age 5

after the siezures were relatively under control but development, communication,

and clarity did not correspondingly improve. After the diagnosis, we sought help

from biomedical doctors. Roff cleared amazingly with trans dermal chelation. Our

supply was interrupted and he went foggy again. Desperate, we went to another

biomedical dr who ran tons of tests and found the classic problems. We treated a

cryptosporidium infection an d are treating his candida albicans infection with

flucanazole. Combined with the GFCF diet and removing eggs (his worst food

allergy), his clarity and language have blossomed. But there is more to be

done. I don't even know about viral infections...

My question to everyone is what type of classroom setting are your children in?

Roff was homeschooled while the siezures were bad. He has been in special ed

classes for 2 years. He will supposedly be in 3rd grade next year. He is so

behind academically that he needs remediation to probably the 1st grade and then

moving forward. Did any of your kids start out in special ed and then transition

out??? How the heck do I catch him up??? I recently started the " Yes, Your

Baby Can Read " program with him at home after school and he is learning to read

many new words. So that needs to continue, along with consistent work in math to

see how far he can go.

And of course, I am reaching for the stars for him. Hoping for complete

recovery and mainstreaming. Did any of your children start in special ed and

then matriculate back in? I live in a small town and the county will not pay

for complete ABA at home, but Alta will pay for 2 hours a day above and beyond

the school day. We can get more hours during the summer, so we are going to do 4

hours a day. Any advice from those who are on the other side with their kids

would be most appreciated!!! How did you educate your children while their

attention wanders, they wander, and they are echolaic??? How did the echolalia

stop? Please advise!

Gratefully,

Sheryl

Sent via BlackBerry by AT & T

Mc Carthy book and " The Cure "

When my son was seven I thought I " cured " him also. I even wrote an article

to that effect at the time and had it published in the Autism Society of

America. Like , I had only good intentions and truly thought my son

was " cured. " But what I didn't realize was that even though he was so much

better, he had a long way to go. Seeing the difference from the weird and

bizarre behavior he used to exhibit made me think he was better, and he was.

It was like night and day, but he wasn't done yet. I'm not sure we are

ever done teaching any of our kids (normal or afflicted). The social,

reading comprehension and friendships were the last to come. His first

" true " friendships that I didn't help facilitate did not happen until he

went away to college.

In my opinion 's child probably has a way to go and is not fully

recovered. Sometimes you don't realize the true deficits in these kids

until they are older and have more complex social issues to deal with. But

it sounds like Evan is doing quite well and on his way. And aren't we all

grateful for all the attention she has brought to help all of our kids? By

reading her book you can tell has been in the trenches like the rest

of us. Her books are comforting in that it makes the reader feel not so

alone in this overwhelming mission to help our children.

My son is twenty and recovered. I determine recovery as being

indistinguishable from his peers. Mine is a little nerdy and a little Bill

Gatesish, but no one who ever guess he was once severely afflicted with

autism. If someone would have told me when he was four and in the third

percentile for speech that some day he be interesting to talk to, knows more

about the world than anyone I know and be able to make me laugh

uncontrollably, I wouldn't have believed them. But what makes me most proud

is that my son is a good person with good values. He helps others and has

the empathy the doctor's said would never be possible for someone with

autism.

He was just recognized for his community service by Hillel and awarded a

congressional service award by a congressman in front of 250 people. There

were only four students getting recognition and he was the only one from his

university. I was busting at the seams because I was so proud of him and

all he has accomplished. When he was first diagnosed, I was just hoping for

an independent life not in a group home or institution. But he surpassed

all my hopes and dreams. He will have a normal life thanks to Dr. G's

treatment and the ABA we did over the years.

When was first diagnosed I was told he would never be " normal, " and

would probably need to be institutionalized. As a result of medical,

behavioral and educational interventions, he now attends a major university

on an academic scholarship. He is president of the Jewish Student

Association and recently joined Sigma Chi Fraternity. He maintains a 3.8

GPA, drives, goes to parties, and has an active social life.

If you wave a magic wand and make these kids bodies healthy, you still have

to catch them up on all the academic, social and life skills they missed

along the way. I ache for the parents whose children are not recovered like

mine. There are some parents who work tirelessly, do the medical and

behavioral interventions and their children's immune systems are too

compromised to have complete recovery.

But the kids I hurt the most for are the ones whose parents haven't given

them a shot by trying the medical or the ones who are afraid of the ABA

because it might hurt their children's self esteem. And don't even get me

started on the parents who do get the ABA, but the ABA providers are trying

to make a fast buck and are not doing it correctly.

It saddens me that some kids they are just too old when they start the

medical and recovery is extremely difficult (but possible). Even if their

children get better physically, the inappropriate behaviors are ingrained.

For years these kids have done these behaviors as a way to survive this

hell. And the older the child is after they start medically, the more they

need to learn in language, social skills and appropriate behavior.

Then there are the parents who would do anything to avoid a meltdown. I

used to be one of them, it was much easier in the short term to give the kid

what they wanted, but was not what was best for the child. These parents do

not treat their children like " normal " kids and subconsciously do anything

to make sure there are no outbursts. Our kids can be very well-behaved if

we give in to them and don't demand that they join up with the rest of the

world.

My child was well-behaved before I began ABA. He only became a terror after

we started ABA and demanded things of him. They hold on tight to their

obsessive behaviors and children who were never violent before often become

so for a short period of time after starting ABA. I didn't even realize how

many things I did to avoid upsetting him.

Most of the time it was bargaining. If you do this, then this will happen.

But you can't bargain with terrorists and that is what our children become

if we let them. But you have to shake up their world and not tolerate the

obsessive behaviors. Unfortunately the real world is not the same all the

time, and as they get older they are no longer little and cute.

Over the years I have talked to thousands of parents who are well meaning in

nature and would do anything to help their kids. Unfortunately those of us

who have lived this know just how draining these kids are and how stubborn

the parent needs to be to make the child do the right thing. Teaching them

everything in the beginning is such a overwhelming task. There was so much

to learn sometimes I didn't know where to start. In time I learned to

concentrate on one behavior at a time until it is mastered and then move on

to the next. It was kind of like bringing a stroke victim back.

It takes an unbelievably strong parent to keep going when you get no

feedback from your child that they are progressing. Recovery is a long

process and the hardest thing I ever had to do was to keep talking and

working with a child who did not look like he responded at all to anything.

It was not until much later when he was significantly better that I realized

he was learning back then. Hang in there and don't give up on your child,

no matter how hard they try to make you.

And if you haven't already done so, get your child to Dr. Goldberg in

Tarzana, CA or Dr. Bruce in Corpus Christi, Texas.

Marcia

May 20, 2009

Marcia,

What a wonderful email! It was such an inspiration to me.. My son is almost

10 and

I am not the mom that is afraid to try anything but infact we have tried so

many

different things but I am at a point (almost back to age 3) when I didn't

know what do next..

I am seriously considering Dr.Goldberg because I feel my son is a viral kid

and he

did respond well to Valtrex in the past. But I am v.interested in knowing

about

Dr.Bruce ( I live in Plano, TX)- Can you please guide me further..

Kudos to and you!

Arch