Re: mad and sad

[Guest guest]

of course it's not your fault. all of us have good days and bad days...hang in there, sweetie!!!!

Subject: Re: For Those of Us Who are Mad and TiredTo: Texas-Autism-Advocacy Date: Monday, May 30, 2011, 7:50 AM

excess calcium could be a malfunctioning parathyroid gland. This is separate from the thyroid.> > > > How do you know how much vitamin D? I had mine checked and the doc of> course said it was fine, but I started taking two thousand mg a day and I> feel so much better, and when I remember to take it, I have fewer hot> flashes, which I have been fighting for FIVE long years now. I also started> taking

Adrenergize, and that is helping as well.> > I have Ethan on all the recommended supps for AC chelation, and adrenal> support has made a world of difference for him.> > HIlda, I cannot believe that person would write such a thing! Was that a> church member? If people would truly live their faith -- ah, how the world> would change.> > I am the "crazy" lady in our town who thinks that nutrition is important. I> am crazy because I have always talked about how children with autism can> improve. I've had "educators" actually roll their eyes in front of me.> When they would have parties when Ethan was in public, you wouldn't believe> the crap that was laid out on the table --every kind of sugary, bad> carbohydrate you can think of. I always brought an organic fruit tray and a> dip made with coconut yogurt and organic no sugar added fruit spread. I>

made sure to fix Ethan's plate first because the kids went for it, and that> was the only thing I would let him have.> > One mom said to me as she watched Ethan eat his fruit, "My son should be> eating that." But people just don't want to change. If this had not> happened to us, I still wouldn't have let my son be a junk food junkie, but> I know we would have had pizza night! I have to confess that.> > One more thing abut vitamin D and magnesium. I was having horrible lower> back pain for quite some time. Training horses and riding all kinds of> horses over the last thirty years has taken its toll. I thought this was it> and I would just have to live with it because I was not going to take> NSAIDS. since starting the vitamin D and magnesium, I have no lower back> pain! I think vitmain D is even more important than calcium but that's JMO.> >

Haven>

[Guest guest]

Inez:

I understand how yo feel. I used to be in your position too...until I got married when my son turned 5 yrs. old, I educated myself to the fullest about my son, his diagnosis, needs, strengths, weaknesses, and how to get the best help for my son. At the time I didn't even now what Autism was or that there was such an exsistance of this type of disability. I was heart broken too, and had now one to turn to, my parents lived in Texas at the time and I lived in NYC. This is what really helped my son and made a world of difference I suggest ABA Therapy/Dr. Lovaas Theraphy at the bare minimum of 10 hours per week 20 is best if you can afford it or the state can get that for you, Behavior Theraphy and get a (BIP) in place for your home, school and when out and about in society, OT, PT and Speech therapies NO LESS than one hour each week each and off course some counseling for

not only you and your sanity, but for your family too... I have a son with PDD-NOS/ADHD who recieved all these therapies every single DAY from 1 1/2 years old until this year - the school just took OT away and slowed down speech therapy to one day a week. He is 11 years old now going into 5th grade with resource room only for extra accomodations/modifications to help with his learning. Please see: http://educatorkatherinejgeorge.com/ and www.autismeducationstation.com (under construction) - my copyrighted and patented sites offers a wide range of information for you to research and get the help you may need in your home for your child. I hope this helps you out a little. If I can

find out what state you live in maybe I can get you some resources to call get this all started for you and your family. God Bless and have a wonderful day.

J. , B.S. M.A. Ed./CI

http://teacherweb.com/TX/sISD/katherinejgeorge/apt1.aspx

educatorkatherinejgeorge.com Educator33@...

From: montgomery <>To: Texas-Autism-Advocacy Sent: Mon, May 30, 2011 8:54:59 AMSubject: mad and sad

I am semi new here.. my son is 6.5.. i have read so much about he could have "maybe" gotten his pdd-nos/autism.. i am doing all the therapies and things.. but I wonder.. did i do something wrong during my pregnancy.. did i cause him to have this? i am so strong somedays.. and some days so low.. i don't want to accept his diagnosis.. but as the years go by and the delays are more obvious.. my heart is getting weaker..

(i am a single mom. his father saw him last in 2009).. i have my mom and dad as support (my mom more than my dad).. but i still don't know what to do to fix this! is this my fault?

thanks

Inez

Subject: Re: For Those of Us Who are Mad and TiredTo: Texas-Autism-Advocacy Date: Monday, May 30, 2011, 7:50 AM

excess calcium could be a malfunctioning parathyroid gland. This is separate from the thyroid.> > > > How do

you know how much vitamin D? I had mine checked and the doc of> course said it was fine, but I started taking two thousand mg a day and I> feel so much better, and when I remember to take it, I have fewer hot> flashes, which I have been fighting for FIVE long years now. I also started> taking Adrenergize, and that is helping as well.> > I have Ethan on all the recommended supps for AC chelation, and adrenal> support has made a world of difference for him.> > HIlda, I cannot believe that person would write such a thing! Was that a> church member? If people would truly live their faith -- ah, how the world> would change.> > I am the "crazy" lady in our town who thinks that nutrition is important. I> am crazy because I have always talked about how children with autism can> improve. I've had "educators" actually roll their eyes in front of me.>

When they would have parties when Ethan was in public, you wouldn't believe> the crap that was laid out on the table --every kind of sugary, bad> carbohydrate you can think of. I always brought an organic fruit tray and a> dip made with coconut yogurt and organic no sugar added fruit spread. I> made sure to fix Ethan's plate first because the kids went for it, and that> was the only thing I would let him have.> > One mom said to me as she watched Ethan eat his fruit, "My son should be> eating that." But people just don't want to change. If this had not> happened to us, I still wouldn't have let my son be a junk food junkie, but> I know we would have had pizza night! I have to confess that.> > One more thing abut vitamin D and magnesium. I was having horrible lower> back pain for quite some time. Training horses and riding all kinds of> horses over the last

thirty years has taken its toll. I thought this was it> and I would just have to live with it because I was not going to take> NSAIDS. since starting the vitamin D and magnesium, I have no lower back> pain! I think vitmain D is even more important than calcium but that's JMO.> > Haven>

[Guest guest]

Inez,

My heart goes out to you. When was your son diagnosed? Was it recently?

I cried for the first year after diagnosis, but it gets easier over time. We try now to live as normal a life as we can and I’ve stopped focusing all my thoughts and time on autism. That seems to help my outlook a lot. My son is almost 7 and I know what you mean about the delays being more obvious. At 3 I thought he would be normal one day, but that apparently isn’t the case.

Inez, I think you should stop trying to fix this. You really can’t (though some would disagree with me there). Try to enjoy your child and live a happy life day to day with him.

I tried so hard to help my child be cured for the first couple of years, but now I try to help him make progress, but we focus on trying to live a happy life like normal people.

By the way, this isn’t your fault. You didn’t do anything wrong!

Let me know if I can help you somehow. Are you near HOuston?

Hugs,

Marilyn

mom of Jay, nearly 7, orig. diagnosed with PDD-NOS, now Moderate Autism

From: montgomery

Sent: Monday, May 30, 2011 8:54 AM

To: Texas-Autism-Advocacy

Subject: mad and sad

I am semi new here.. my son is 6.5.. i have read so much about he could have "maybe" gotten his pdd-nos/autism.. i am doing all the therapies and things.. but I wonder.. did i do something wrong during my pregnancy.. did i cause him to have this? i am so strong somedays.. and some days so low.. i don't want to accept his diagnosis.. but as the years go by and the delays are more obvious.. my heart is getting weaker..

(i am a single mom. his father saw him last in 2009).. i have my mom and dad as support (my mom more than my dad).. but i still don't know what to do to fix this! is this my fault?

thanks

Inez

[Guest guest]

Is am Aspergers student capable of filling out answers to a CDI,Childrens Depression Inventory test.It is reported back that my child according to his answers doesn't seek out pleaurable activities, anhedonia.Please comment.Thank you!Sent from my iPhone

Inez,

My heart goes out to you. When was your son diagnosed? Was it recently?

I cried for the first year after diagnosis, but it gets easier over time. We try now to live as normal a life as we can and I’ve stopped focusing all my thoughts and time on autism. That seems to help my outlook a lot. My son is almost 7 and I know what you mean about the delays being more obvious. At 3 I thought he would be normal one day, but that apparently isn’t the case.

Inez, I think you should stop trying to fix this. You really can’t (though some would disagree with me there). Try to enjoy your child and live a happy life day to day with him.

I tried so hard to help my child be cured for the first couple of years, but now I try to help him make progress, but we focus on trying to live a happy life like normal people.

By the way, this isn’t your fault. You didn’t do anything wrong!

Let me know if I can help you somehow. Are you near HOuston?

Hugs,

Marilyn

mom of Jay, nearly 7, orig. diagnosed with PDD-NOS, now Moderate Autism

From: montgomery

Sent: Monday, May 30, 2011 8:54 AM

To: Texas-Autism-Advocacy

Subject: mad and sad

I am semi new here.. my son is 6.5.. i have read so much about he could have "maybe" gotten his pdd-nos/autism.. i am doing all the therapies and things.. but I wonder.. did i do something wrong during my pregnancy.. did i cause him to have this? i am so strong somedays.. and some days so low.. i don't want to accept his diagnosis.. but as the years go by and the delays are more obvious.. my heart is getting weaker..

(i am a single mom. his father saw him last in 2009).. i have my mom and dad as support (my mom more than my dad).. but i still don't know what to do to fix this! is this my fault?

thanks

Inez

[Guest guest]

Inez: It is part of the normal grieving process to try to blame yourself.  And even though we all will try to tell you not to do this, and even as you try to look forward, I think moms will always feel like it is something they did or it is their fault, even when it is not.  My son is 15, so he has had his diagnosis for 13-1/2 years now (give or take) and there are still time periods were I sink into that way of thinking.  Although my son has made gains, there is no " fixing " this (not for him).  's autism is such that he will need care for the rest of his life.  But his life has great value and he touches the hearts of so many.  So while he may not be a doctor or an astrophysicist, he will continue to bring out the best in people, remind them what is truly important in their own lives, inspire some (two so far) to become special education teachers, and much, much more.  And joining this group is incredibly valuable because of the collective wisdom to share and collective shoulders to cry on when you need it.  Hilda From: Texas-Autism-Advocacy [mailto:Texas-Autism-Advocacy ] On Behalf Of marilyna@...Sent: Monday, May 30, 2011 12:06 PMTo: Texas-Autism-Advocacy Subject: Re: mad and sad Inez, My heart goes out to you. When was your son diagnosed? Was it recently? I cried for the first year after diagnosis, but it gets easier over time. We try now to live as normal a life as we can and I’ve stopped focusing all my thoughts and time on autism. That seems to help my outlook a lot. My son is almost 7 and I know what you mean about the delays being more obvious. At 3 I thought he would be normal one day, but that apparently isn’t the case.Inez, I think you should stop trying to fix this. You really can’t (though some would disagree with me there). Try to enjoy your child and live a happy life day to day with him. I tried so hard to help my child be cured for the first couple of years, but now I try to help him make progress, but we focus on trying to live a happy life like normal people.By the way, this isn’t your fault. You didn’t do anything wrong!Let me know if I can help you somehow. Are you near HOuston? Hugs,Marilynmom of Jay, nearly 7, orig. diagnosed with PDD-NOS, now Moderate Autism From: montgomery Sent: Monday, May 30, 2011 8:54 AMTo: Texas-Autism-Advocacy Subject: mad and sad I am semi new here.. my son is 6.5.. i have read so much about he could have " maybe " gotten his pdd-nos/autism.. i am doing all the therapies and things.. but I wonder.. did i do something wrong during my pregnancy.. did i cause him to have this? i am so strong somedays.. and some days so low.. i don't want to accept his diagnosis.. but as the years go by and the delays are more obvious.. my heart is getting weaker.. (i am a single mom. his father saw him last in 2009).. i have my mom and dad as support (my mom more than my dad).. but i still don't know what to do to fix this! is this my fault? thanksInez

[Guest guest]

I do politely disagree and ask you to consider the AC Protocol.  My son has been on the protocol since January and it has produced a great deal of progress across the board:  more reciprocal speech, improvement in coordination, vestibular improvement, and bets of all a vast improvement in his health.  He has been off steroids since we started.  He has needed his rescue inhaler only a few times.  He does seem to be developing cellulitis from some mosquito bites but it is not spreading like it has in the past.

On rounds there is much less stimming and more focus.  His academic progress has been wonderful these past months.  If the child has mercury in their body and brain and  you leave it in there, it will continue to do damage.  I don't expect or want my son to be " perfect, "   but someone put this toxic substance in my child and it severely affected his health, so I want it out -- no differently than any mother of a child with cancer would want the cancer out of her child.

I have NO regrets about doing biomed and AC chelation and I know had I not done these things my son would not have progressed from severe and non-verbal to the high functioning and happy, well behaved child he is today.  Today he has hope of an independent future.  If I had done nothing, his life would have been bound for institutionalization.

Haven

[Guest guest]

i agree and our children are gifts no matter how they are and like Hilda my son has already inspired one person to go into special ed because of him and even his kinder teacher this year did a grad school project because he inspired her. no matter what they have purpose and meaning and love to give. hang in there. Sent from my iPhone

Inez: It is part of the normal grieving process to try to blame yourself. And even though we all will try to tell you not to do this, and even as you try to look forward, I think moms will always feel like it is something they did or it is their fault, even when it is not. My son is 15, so he has had his diagnosis for 13-1/2 years now (give or take) and there are still time periods were I sink into that way of thinking. Although my son has made gains, there is no "fixing" this (not for him). 's autism is such that he will need care for the rest of his life. But his life has great value and he touches the hearts of so many. So while he may not be a doctor or an astrophysicist, he will continue to bring out the best in people, remind them what is truly important in their own lives, inspire some (two so far) to become special education teachers, and much, much more. And joining this group is incredibly valuable because of the collective wisdom to share and collective shoulders to cry on when you need it. Hilda From: Texas-Autism-Advocacy [mailto:Texas-Autism-Advocacy ] On Behalf Of marilyna@...Sent: Monday, May 30, 2011 12:06 PMTo: Texas-Autism-Advocacy Subject: Re: mad and sad Inez, My heart goes out to you. When was your son diagnosed? Was it recently? I cried for the first year after diagnosis, but it gets easier over time. We try now to live as normal a life as we can and I’ve stopped focusing all my thoughts and time on autism. That seems to help my outlook a lot. My son is almost 7 and I know what you mean about the delays being more obvious. At 3 I thought he would be normal one day, but that apparently isn’t the case.Inez, I think you should stop trying to fix this. You really can’t (though some would disagree with me there). Try to enjoy your child and live a happy life day to day with him. I tried so hard to help my child be cured for the first couple of years, but now I try to help him make progress, but we focus on trying to live a happy life like normal people.By the way, this isn’t your fault. You didn’t do anything wrong!Let me know if I can help you somehow. Are you near HOuston? Hugs,Marilynmom of Jay, nearly 7, orig. diagnosed with PDD-NOS, now Moderate Autism From: montgomery Sent: Monday, May 30, 2011 8:54 AMTo: Texas-Autism-Advocacy Subject: mad and sad I am semi new here.. my son is 6.5.. i have read so much about he could have "maybe" gotten his pdd-nos/autism.. i am doing all the therapies and things.. but I wonder.. did i do something wrong during my pregnancy.. did i cause him to have this? i am so strong somedays.. and some days so low.. i don't want to accept his diagnosis.. but as the years go by and the delays are more obvious.. my heart is getting weaker.. (i am a single mom. his father saw him last in 2009).. i have my mom and dad as support (my mom more than my dad).. but i still don't know what to do to fix this! is this my fault? thanksInez

[Guest guest]

Haven have you looked into Brain Balance? I think it could be great for your

son.

>

> I do politely disagree and ask you to consider the AC Protocol. My son has

> been on the protocol since January and it has produced a great deal of

> progress across the board: more reciprocal speech, improvement in

> coordination, vestibular improvement, and bets of all a vast improvement in

> his health. He has been off steroids since we started. He has needed his

> rescue inhaler only a few times. He does seem to be developing cellulitis

> from some mosquito bites but it is not spreading like it has in the past.

>

> On rounds there is much less stimming and more focus. His academic progress

> has been wonderful these past months. If the child has mercury in their

> body and brain and you leave it in there, it will continue to do damage. I

> don't expect or want my son to be " perfect, " but someone put this toxic

> substance in my child and it severely affected his health, so I want it out

> -- no differently than any mother of a child with cancer would want the

> cancer out of her child.

>

> I have NO regrets about doing biomed and AC chelation and I know had I not

> done these things my son would not have progressed from severe and

> non-verbal to the high functioning and happy, well behaved child he is

> today. Today he has hope of an independent future. If I had done nothing,

> his life would have been bound for institutionalization.

>

> Haven

>

[Guest guest]

Haven,

I have the utmost respect and admiration for you and and the moms like you who do so much for your kids.

I would probably have done more in the biomed area if my son had been sick. He never had all those health issues that many autism kids do.

I spent nearly every waking moment consumed with autism for the first 2 or 3 years, but took a step back eventually for my own sanity.

Not that I don’t do as much as I can manage for him. I do. I just decided that we need to have a normal family life as much as we can.

Just my viewpoint.

Marilyn

From: Haven DeLay

Sent: Monday, May 30, 2011 9:39 PM

To: Texas-Autism-Advocacy

Subject: Re: mad and sad

I do politely disagree and ask you to consider the AC Protocol. My son has been on the protocol since January and it has produced a great deal of progress across the board: more reciprocal speech, improvement in coordination, vestibular improvement, and bets of all a vast improvement in his health. He has been off steroids since we started. He has needed his rescue inhaler only a few times. He does seem to be developing cellulitis from some mosquito bites but it is not spreading like it has in the past.On rounds there is much less stimming and more focus. His academic progress has been wonderful these past months. If the child has mercury in their body and brain and you leave it in there, it will continue to do damage. I don't expect or want my son to be "perfect," but someone put this toxic substance in my child and it severely affected his health, so I want it out -- no differently than any mother of a child with cancer would want the cancer out of her child.I have NO regrets about doing biomed and AC chelation and I know had I not done these things my son would not have progressed from severe and non-verbal to the high functioning and happy, well behaved child he is today. Today he has hope of an independent future. If I had done nothing, his life would have been bound for institutionalization.Haven

[Guest guest]

Marilyn: I will ditto your sentiments.  We did have on a gluten-free, casein-free, sugar-free diet when he was younger, but in adding foods back, he was able to tolerate things without any change in his behavior.  He looked like he was on morphine when he was about 2 years of age and the diet did wonderful things for him.  Other than his seizures that presented when he was 8-9 years of age, he has been a very healthy kid.  We sometimes can go a whole year without visiting his pediatrician and they will look at his chart and go, " Oh, he hasn't been here since last year??? " like it was some weird thing.  I think the challenges he has with his mouth (not speaking well), his fine and gross motor coordination are more because of his hypotonic cerebral palsy component and not his autism.  Hilda From: Texas-Autism-Advocacy [mailto:Texas-Autism-Advocacy ] On Behalf Of marilyna@...Sent: Monday, May 30, 2011 10:21 PMTo: Texas-Autism-Advocacy Subject: Re: mad and sad Haven, I have the utmost respect and admiration for you and and the moms like you who do so much for your kids. I would probably have done more in the biomed area if my son had been sick. He never had all those health issues that many autism kids do. I spent nearly every waking moment consumed with autism for the first 2 or 3 years, but took a step back eventually for my own sanity. Not that I don’t do as much as I can manage for him. I do. I just decided that we need to have a normal family life as much as we can.Just my viewpoint. Marilyn From: Haven DeLay Sent: Monday, May 30, 2011 9:39 PMTo: Texas-Autism-Advocacy Subject: Re: mad and sad I do politely disagree and ask you to consider the AC Protocol. My son has been on the protocol since January and it has produced a great deal of progress across the board: more reciprocal speech, improvement in coordination, vestibular improvement, and bets of all a vast improvement in his health. He has been off steroids since we started. He has needed his rescue inhaler only a few times. He does seem to be developing cellulitis from some mosquito bites but it is not spreading like it has in the past.On rounds there is much less stimming and more focus. His academic progress has been wonderful these past months. If the child has mercury in their body and brain and you leave it in there, it will continue to do damage. I don't expect or want my son to be " perfect, " but someone put this toxic substance in my child and it severely affected his health, so I want it out -- no differently than any mother of a child with cancer would want the cancer out of her child.I have NO regrets about doing biomed and AC chelation and I know had I not done these things my son would not have progressed from severe and non-verbal to the high functioning and happy, well behaved child he is today. Today he has hope of an independent future. If I had done nothing, his life would have been bound for institutionalization.Haven

[Guest guest]

Marilynn,I totally understand.  we took a rather long break, too.  Not from the diet or supplements, but from going to the DAN and this was after he had reactions to IV.  Then we got talked into IV EDTA and he had an even worse reaction and some other things happened that made me question whether there was real concern for my son or just concern for squeezing the last dime out of us.

I took a step back and realized that with our DAN the new things he threw at us -- so many supps that didn't work, every new protocol that came out, but when I asked if he would get on board with AC, his answer was, " well, just leave the metals in there then " Because we didn't want to put our son on oral steroids and keep doing IV and RISK our son's life, and because we wouldn't put him on Prozac because that was this doc's answer to the stimming returning with IV.  So we have definitely taken a break from DAN.  And that break will probably last a lifetime. But not a break from healthy biomedical interventions.

I cannot deny that diet and metabolic supports have helped my son all along.  However, my son was diagnosed with " heavy metal intoxication "   when he was almost three, I think.  So we knew the mercury was in there.  Even the neurologist wanted to chelate him but he wanted to admit him to the hospital, BUT then he admitted he didn't really know much about chelation (in other words he would be experimenting on my son).   We declined that route.  Especially since we were grilled about NEVER mentioning it came form vaccines because " That's not an accepted line of thought here. "   and of course this children's hospital get tons of bucks form Big Pharma.  Many of the doctors got their educations paid for with scholarships from Big Pharma, as well.

Anyway, we knew it was in there and we have always wanted it out.  So now we do AC.  it is inexpensive and we see lots of improvements and it is low dose and safe.  We are using ALA only.  So we'll do AC for three years and see what happens.  there is a lot of good research behind ALA for a lot of health benefits.  So as long as my husband is willing to help and he sees the improvements too, we will continue.

We all love our children dearly, I know that.  We just all have to find our own path.  I felt I had to do something after it happened because my son changed so dramatically within a day and lost all speech.  Hell, I swear he was catatonic at times and it would scare me to death!  He would just stare blankly into space and would not respond at all.  He wouldn't even blink!  I had to do something because he was getting sick with a fever every two weeks, and I am not exaggerating.  Our lives revolved around each new illness. 

Then we couldn't go anywhere because he couldn't stand any change and couldn't cope with the sensory input.  And his behavior after regression was a nightmare.  I knew I couldn't live like that forever (unless I tried everything and then found I had to) but I didn't want to live like that, and I knew his cause because he change immediately following the shots. so i was just compelled.

I like who my son is.  He is the most genuine human being I have ever met.  But I want him to have HIS OWN life.  I cannot imagine what life would have been like if I could have never gotten away from home.  I know our home is better than the one I came from, but still Independence is a wonderful thing.  so I am not working for a cure.  I am working for his independence for his sake.  I make no judgements against any parent who decides to take a different path.  Each person has to find what works best for them.  We all know that what works for one child may not necessarily work for another.

But being able to go places, now having conversations with him (and he is really starting to ask the BIG questions)  and seeing him happy when he learns a new skill....I have no regrets about doing the things I have done to help him nor being committed to continuing.

We have 280 rounds of AC to go.  Then we will take a step back and see where we are.  If I thought it wasn't helping, then I would stop, but he has been healthy since January - except for the cellulitis he has now, so it has still been the longest stretch of health he has had since he was fifteen months old.

So you are right Marilyn, I was motivated by his poor health and the loss of his speech.  he knew that he wanted to say.... It's like the time I had surgery and I became conscious during it and I felt them cutting me, and I screamed " You're hurting me!  You're hurting me! "   but no one did anything.  Then I realized I only " THOUGHT " I was talking, but my lips weren't really moving and sound wasn't coming out -- the mind was conscious but the body didn't carry out the exercise.  I think that is what it was like for Ethan because he would tantrum when he was trying to communicate and I couldn't figure out what he was " saying. "   maybe he thought he was talking, too, and he was angry because he couldn't figure out why I wasn't hearing him.  I felt his voice was locked inside his brain and I had to help him get it back.

Today, he asked me why do people have belly buttons:)I always think of us all as " sisters of circumstance. "   Do I wish this had never happened to my son?  You bet.  do I wish I had known more and had avoided the pediatrician's off ice like the plague?  Yes, I do. Inez, I do not blame myself.  I trusted doctors to know better and to be honest.  I just found out the hard way that they do not know better and they often lie.

HugsHaven

[Guest guest]

thank you.. i know i can't change the past.. but i am always wondering.. if i did something else during pregnancy.. worked more.. worked less..the stress my husband (now ex) did to me and marriage.. more orange juice. only drank bottled water..etc etc i can come up with a MILLION things to make me panicked..

i keep reading about how to get the mercury out ... i read your acronym letters.. but i don't know what they are..

can you give me the "mercury out for dummies" version.. what do i do exactly?

what is is that you are doing for 3 years? how do you get your child tested to see their mercury count?

thank you so much

Inez

and p.s. i sure hope there is a guy out there who still gets it and can love us "truly"..one thing at a time..

Subject: Re: mad and sadTo: Texas-Autism-Advocacy Date: Tuesday, May 31, 2011, 12:12 AM

Marilynn,I totally understand. we took a rather long break, too. Not from the diet or supplements, but from going to the DAN and this was after he had reactions to IV. Then we got talked into IV EDTA and he had an even worse reaction and some other things happened that made me question whether there was real concern for my son or just concern for squeezing the last dime out of us.I took a step back and realized that with our DAN the new things he threw at us -- so many supps that didn't work, every new protocol that came out, but when I asked if he would get on board with AC, his answer was, "well, just leave the metals in there then" Because we didn't want to put our son on oral steroids and keep doing IV and RISK our son's life, and because we wouldn't put him on Prozac because that was this doc's answer to the stimming returning with IV. So we have definitely taken a break from DAN. And that break

will probably last a lifetime. But not a break from healthy biomedical interventions.I cannot deny that diet and metabolic supports have helped my son all along. However, my son was diagnosed with "heavy metal intoxication" when he was almost three, I think. So we knew the mercury was in there. Even the neurologist wanted to chelate him but he wanted to admit him to the hospital, BUT then he admitted he didn't really know much about chelation (in other words he would be experimenting on my son). We declined that route. Especially since we were grilled about NEVER mentioning it came form vaccines because "That's not an accepted line of thought here." and of course this children's hospital get tons of bucks form Big Pharma. Many of the doctors got their educations paid for with scholarships from Big Pharma, as well.Anyway, we knew it was in there and we have always wanted it out.

So now we do AC. it is inexpensive and we see lots of improvements and it is low dose and safe. We are using ALA only. So we'll do AC for three years and see what happens. there is a lot of good research behind ALA for a lot of health benefits. So as long as my husband is willing to help and he sees the improvements too, we will continue.We all love our children dearly, I know that. We just all have to find our own path. I felt I had to do something after it happened because my son changed so dramatically within a day and lost all speech. Hell, I swear he was catatonic at times and it would scare me to death! He would just stare blankly into space and would not respond at all. He wouldn't even blink! I had to do something because he was getting sick with a fever every two weeks, and I am not exaggerating. Our lives revolved around each new illness. Then we

couldn't go anywhere because he couldn't stand any change and couldn't cope with the sensory input. And his behavior after regression was a nightmare. I knew I couldn't live like that forever (unless I tried everything and then found I had to) but I didn't want to live like that, and I knew his cause because he change immediately following the shots. so i was just compelled.I like who my son is. He is the most genuine human being I have ever met. But I want him to have HIS OWN life. I cannot imagine what life would have been like if I could have never gotten away from home. I know our home is better than the one I came from, but still Independence is a wonderful thing. so I am not working for a cure. I am working for his independence for his sake. I make no judgements against any parent who decides to take a different path. Each person has to find what works best for them. We all

know that what works for one child may not necessarily work for another.But being able to go places, now having conversations with him (and he is really starting to ask the BIG questions) and seeing him happy when he learns a new skill....I have no regrets about doing the things I have done to help him nor being committed to continuing.We have 280 rounds of AC to go. Then we will take a step back and see where we are. If I thought it wasn't helping, then I would stop, but he has been healthy since January - except for the cellulitis he has now, so it has still been the longest stretch of health he has had since he was fifteen months old.So you are right Marilyn, I was motivated by his poor health and the loss of his speech. he knew that he wanted to say.... It's like the time I had surgery and I became conscious during it and I felt them cutting me, and I screamed "You're hurting me! You're hurting

me!" but no one did anything. Then I realized I only "THOUGHT" I was talking, but my lips weren't really moving and sound wasn't coming out -- the mind was conscious but the body didn't carry out the exercise. I think that is what it was like for Ethan because he would tantrum when he was trying to communicate and I couldn't figure out what he was "saying." maybe he thought he was talking, too, and he was angry because he couldn't figure out why I wasn't hearing him. I felt his voice was locked inside his brain and I had to help him get it back.Today, he asked me why do people have belly buttons:)I always think of us all as "sisters of circumstance." Do I wish this had never happened to my son? You bet. do I wish I had known more and had avoided the pediatrician's off ice like the plague? Yes, I do. Inez, I do not blame myself. I trusted doctors to know better and to be

honest. I just found out the hard way that they do not know better and they often lie.HugsHaven

[Guest guest]

i meant i agree with the grieving and the feeling like it was your fault at time. i believe our kids can be helped and in some instances cured too. Sent from my iPhone

I do politely disagree and ask you to consider the AC Protocol. My son has been on the protocol since January and it has produced a great deal of progress across the board: more reciprocal speech, improvement in coordination, vestibular improvement, and bets of all a vast improvement in his health. He has been off steroids since we started. He has needed his rescue inhaler only a few times. He does seem to be developing cellulitis from some mosquito bites but it is not spreading like it has in the past.

On rounds there is much less stimming and more focus. His academic progress has been wonderful these past months. If the child has mercury in their body and brain and you leave it in there, it will continue to do damage. I don't expect or want my son to be "perfect," but someone put this toxic substance in my child and it severely affected his health, so I want it out -- no differently than any mother of a child with cancer would want the cancer out of her child.

I have NO regrets about doing biomed and AC chelation and I know had I not done these things my son would not have progressed from severe and non-verbal to the high functioning and happy, well behaved child he is today. Today he has hope of an independent future. If I had done nothing, his life would have been bound for institutionalization.

Haven

[Guest guest]

Hilda and Marilyn I sure am not an autism expert. I guess I'm more of a Tyler

and Taylin expert. But something I've come to learn about our situation is

that the kids are sick. But not sick in the way that you and I grew up

understanding. Tyler actually wasn't sick for a few years. He was deep in

his autism and people would say " wow you are lucky at least he's healthy,

because he NEVER got sick. " Only seizures and autism. In fact he finally

sneezed about 2 years into his recovery. I'll never forget it...we were so

startled by this very normal event....for us it was VERY noticeable. He always

had that gone/blank look on his face.

I don't think of doing diet to see if any behavioral changes are noted. I

don't think of autism as behavioral. I think of diet as a lifelong need to

prevent further immune events that I believe trigger chronic fatigue, athritis,

auto immune issues....

I don't share my thoughts to come across as an expert for every kid, but what if

I've learned something that can help your family. I always wished that someone

had warned me in 2003.

To me, it seems that the kids have damaged immune function. They are sick but

their body unable to have normal immune function. So infections affect their

brain. I often see the kids either very thin, or very chubby. People throw

the word " healthy " around, but I hardly ever see a healthy child anymore.

I guess most think that if a kid isn't " sick " that they are healthy. To me, if

you have autism...you are very sick.

A child not having muscus, rashes, fevers, cleansings but deeply into autism is

a very sick child. But the body learns to live in this state and the kids know

how to keep themselves feeling ok.

My son has really come out of autism and with it has come almost weekly rashes,

fevers, infections that his body is clearing.

Maybe we are dealing with several different autisms. I don't know. But I do

think that someday the mainstream will catch on, that it's GOOD to have a fever.

Right now we live in a suppression culture. Suppress a cough, suppress a

fever....I believe it's just driving the illness further into the body.

In any case, I do know that only the moms really know which step to take next.

It's not just the kid, it's the whole family to juggle.....the whole picture.

It's complicated and without any true direction from the mainstream we really

are all pioneering our own paths to make it work for our families.

>

> Marilyn:

>

>

>

> I will ditto your sentiments. We did have on a gluten-free,

casein-free, sugar-free diet when he was younger, but in adding foods back, he

was able to tolerate things without any change in his behavior. He looked like

he was on morphine when he was about 2 years of age and the diet did wonderful

things for him. Other than his seizures that presented when he was 8-9 years of

age, he has been a very healthy kid. We sometimes can go a whole year without

visiting his pediatrician and they will look at his chart and go, " Oh, he hasn't

been here since last year??? " like it was some weird thing.

>

>

>

> I think the challenges he has with his mouth (not speaking well), his fine and

gross motor coordination are more because of his hypotonic cerebral palsy

component and not his autism.

>

>

>

> Hilda

>

>

>

> From: Texas-Autism-Advocacy

[mailto:Texas-Autism-Advocacy ] On Behalf Of marilyna@...

> Sent: Monday, May 30, 2011 10:21 PM

> To: Texas-Autism-Advocacy

> Subject: Re: mad and sad

>

>

>

>

>

> Haven,

>

>

>

> I have the utmost respect and admiration for you and and the moms like

you who do so much for your kids.

>

> I would probably have done more in the biomed area if my son had been sick.

He never had all those health issues that many autism kids do.

>

> I spent nearly every waking moment consumed with autism for the first 2 or 3

years, but took a step back eventually for my own sanity.

>

> Not that I don’t do as much as I can manage for him. I do. I just decided

that we need to have a normal family life as much as we can.

>

> Just my viewpoint.

>

>

>

> Marilyn

>

>

>

>

>

>

>

> Sent: Monday, May 30, 2011 9:39 PM

>

> To: Texas-Autism-Advocacy

>

> Subject: Re: mad and sad

>

>

>

>

>

> I do politely disagree and ask you to consider the AC Protocol. My son has

been on the protocol since January and it has produced a great deal of progress

across the board: more reciprocal speech, improvement in coordination,

vestibular improvement, and bets of all a vast improvement in his health. He

has been off steroids since we started. He has needed his rescue inhaler only a

few times. He does seem to be developing cellulitis from some mosquito bites

but it is not spreading like it has in the past.

>

> On rounds there is much less stimming and more focus. His academic progress

has been wonderful these past months. If the child has mercury in their body

and brain and you leave it in there, it will continue to do damage. I don't

expect or want my son to be " perfect, " but someone put this toxic substance in

my child and it severely affected his health, so I want it out -- no differently

than any mother of a child with cancer would want the cancer out of her child.

>

> I have NO regrets about doing biomed and AC chelation and I know had I not

done these things my son would not have progressed from severe and non-verbal to

the high functioning and happy, well behaved child he is today. Today he has

hope of an independent future. If I had done nothing, his life would have been

bound for institutionalization.

>

> Haven

>

[Guest guest]

Haven I think you can get him evaluated by BB for around $300. If it seems

right to you, you could save or fundraise. I understand it all. We have 2

kids and everything costs a fortune. But for the interventions that really

felt right to me, I didn't let money get in my way. Trust me, my heroin dead

mom didn't leave us anything. My husbands parents drive school buses to pay

their medical costs. When we find something we want, I believe we'll find a

way and then we formulate a plan. Fundraising has been work...but helpful!!!

$6,000 is the basic cost of BB. But it's rather close to you out there, so

this would be your only cost. I wish this was all covered too. In the end,

it may save you endless money in caring for your son. You might be able to

finance it too....break it into payments.

You'll know in your heart if this is the right direction after having him

evaluated. (if you choose to do so) I would put him on the best diet possible

and move far away from ABA type approach while doing BB. A very simple/healing

lifestyle for these 3 months would be ideal. Giving his body a chance to rest

and heal. Often I think the kids are going from one stressful situation to the

next and always in fight or flight having to deal with it all. We kept Tyler

in a hotel room and joined him (Son-rise) OR we went for long bike rides and to

his favorite parks out in Plano. We ate really well and his life was very

simple during this time. I always trust my gut on these things.

Love

>

> Yes, , we have heard of Brain Balance have heard many great things

> abut it, but we just can't afford it. We are so broke form doing years of

> DAN along with Ethan's past immune system issues that some days I wonder if

> we will ever catch up. I shouldn't really say " past immune issues. " While

> his " asthma " is noticeably improved. He is once again developing cellulitis

> from some mosquito bites, so we will be going to the doctors tomorrow. the

> only difference now is that he got his Medicaid waiver about a year ago, but

> before that, there was no urgent care clinic near here, so every time he had

> to go to emergency for asthma, pneumonia, cellulitis, impacted bowel etc...

> we had to go to the emergency room. With the insurance we had it was 500

> out of pocket every time.

>

> I have heard BB is very expensive. I wish we could but we just can't.

>

> I think these are the things that make a lot of moms sad, sometimes. My

> husband and I were talking about how easy life seemed to be back during the

> Clinton days. Not to start any political debate here -- I was not happy

> with his personal conduct, but if I look back and think about when life was

> the easiest financially it was then. but then my husband reminded me that

> that was pre- baby and I was working full-time! Duh!

>

> I miss working and bringing home a pay check:( I miss not having to worry

> whether there was going to be just enough to get by for another two weeks.

>

> To Inez, we all go through our grief. I still cry sometimes. I still have

> a very clear picture of who he was and how he acted before his fifteen month

> shots, and a very clear picture of how much things change din a day, but if

> I let myself go there,...not a pretty picture.

>

> Our children are gifts. I love the way my son views the world. But my

> nightmare is leaving him behind. I don't have the kind of family I could

> trust to care for him. These people have not been helpful or supportive or

> even just a little sympathetic at all.

>

> My husband's family has been as supportive as they can be, and they give

> emotional support and encouragement, but they are in New York and we are in

> Texas. Except one sister in law who lives here who has been wonderful. She

> is Ethan's guardian, and my husband's other sister is the backup. BUT they

> are older than we are! Now what?

>

> Ethan is eleven and is making great progress. He says he wants to be an

> architect. He is a whiz on the computer. but he doesn't really have any

> friends. I get so sad we didn't get to have other children so he could

> have brothers/sisters to help him when we are gone. It terrifies me

> thinking of leaving him alone in the world.

>

> If I just knew I could live forever or just live as long as he does....that

> would be a load off my mind. He is having a happy childhood, but I fear

> that he may be or feel isolated as an adult if we are not around. That's my

> worry. That's what can make me feel sad.

>

> Then I have these daydreams -- silly daydreams and I dream I win a big

> lottery, and there is this big beautiful ranch in East Texas, and I dream I

> buy it and build an autism community -- a place where families and children

> and adults with autism can work and live and shop and go to a really school

> that " gets it " and have community support because lets face it, we are the

> ones who know and understand. Wouldn't it be nice? It is hard, I think,

> even for the parents living in communities who really don't want us and look

> at us like we're crazy because we feed our kids real food instead of crap

> and we actually expect quality in our children's education. It is just a

> dream, but it makes me feel better thinking about it.

>

>

> Haven

>

[Guest guest]

Hi Inez,

I wanted to offer you words of encouragement, but when I was reading the

responses from the others, I myself was actually comforted by what these mothers

wrote.

I know firsthand how isolated and heartsick you are. I want to share with you a

few things, not to pass myself off as a martyr, but to let you know things will

get better. I was in an abusive marraige for 9yrs. When my youngest daughter

was born, we found out she had a serious heart condition. I decided that I had

enough of this man and finally left him when she was nine months old, and my two

other children were 4 and 6. For the first several years it was literally hell

on earth because my ex would verbally threaten and harrass me, and my daugter

had open-heart surgery. I am grateful that I have had support from my family

and friends, but most of them don't really " get " and understand my situation.

If you're the praying kind, that helps immensly. Like I said, it gets better,

but it does not get easier, I don't want to sugar coat it. I just want to tell

you don't give up, you really don't have a choice when it comes to that little

guy and God would not have given you the task if he didn't belive in you enough

to do it. We have been on our own for eight years now, and my daughter will be

having another surgery this summer. If God can bring me this far and I still

(somewhat) have my sanity, then there is much more hope for you. You are going

to look back and be amazed at how strong you've become.

May God bless you and your little one on the journey

> >

> >

> >

> > How do you know how much vitamin D? I had mine checked and the doc of

> > course said it was fine, but I started taking two thousand mg a day and I

> > feel so much better, and when I remember to take it, I have fewer hot

> > flashes, which I have been fighting for FIVE long years now. I also started

> > taking Adrenergize, and that is helping as well.

> >

> > I have Ethan on all the recommended supps for AC chelation, and adrenal

> > support has made a world of difference for him.

> >

> > HIlda, I cannot believe that person would write such a thing! Was that a

> > church member? If people would truly live their faith -- ah, how the world

> > would change.

> >

> > I am the " crazy " lady in our town who thinks that nutrition is important. I

> > am crazy because I have always talked about how children with autism can

> > improve. I've had " educators " actually roll their eyes in front of me.

> > When they would have parties when Ethan was in public, you wouldn't believe

> > the crap that was laid out on the table --every kind of sugary, bad

> > carbohydrate you can think of. I always brought an organic fruit tray and a

> > dip made with coconut yogurt and organic no sugar added fruit spread. I

> > made sure to fix Ethan's plate first because the kids went for it, and that

> > was the only thing I would let him have.

> >

> > One mom said to me as she watched Ethan eat his fruit, " My son should be

> > eating that. " But people just don't want to change. If this had not

> > happened to us, I still wouldn't have let my son be a junk food junkie, but

> > I know we would have had pizza night! I have to confess that.

> >

> > One more thing abut vitamin D and magnesium. I was having horrible lower

> > back pain for quite some time. Training horses and riding all kinds of

> > horses over the last thirty years has taken its toll. I thought this was it

> > and I would just have to live with it because I was not going to take

> > NSAIDS. since starting the vitamin D and magnesium, I have no lower back

> > pain! I think vitmain D is even more important than calcium but that's JMO.

> >

> > Haven

> >

>

[Guest guest]

So many dads run away! They ought to be hung up and shot at!!

Cammy

http://stores.ebay.com/Cammys-Clothing-Treasures

> >

> >

> >

> > How do you know how much vitamin D? I had mine checked and the doc of

> > course said it was fine, but I started taking two thousand mg a day and I

> > feel so much better, and when I remember to take it, I have fewer hot

> > flashes, which I have been fighting for FIVE long years now. I also started

> > taking

> Adrenergize, and that is helping as well.

> >

> > I have Ethan on all the recommended supps for AC chelation, and adrenal

> > support has made a world of difference for him.

> >

> > HIlda, I cannot believe that person would write such a thing! Was that a

> > church member? If people would truly live their faith -- ah, how the world

> > would change.

> >

> > I am the " crazy " lady in our town who thinks that nutrition is important. I

> > am crazy because I have always talked about how children with autism can

> > improve. I've had " educators " actually roll their eyes in front of me.

> > When they would have parties when Ethan was in public, you wouldn't believe

> > the crap that was laid out on the table --every kind of sugary, bad

> > carbohydrate you can think of. I always brought an organic fruit tray and a

> > dip made with coconut yogurt and organic no sugar added fruit spread. I

> >

> made sure to fix Ethan's plate first because the kids went for it, and that

> > was the only thing I would let him have.

> >

> > One mom said to me as she watched Ethan eat his fruit, " My son should be

> > eating that. " But people just don't want to change. If this had not

> > happened to us, I still wouldn't have let my son be a junk food junkie, but

> > I know we would have had pizza night! I have to confess that.

> >

> > One more thing abut vitamin D and magnesium. I was having horrible lower

> > back pain for quite some time. Training horses and riding all kinds of

> > horses over the last thirty years has taken its toll. I thought this was it

> > and I would just have to live with it because I was not going to take

> > NSAIDS. since starting the vitamin D and magnesium, I have no lower back

> > pain! I think vitmain D is even more important than calcium but that's JMO.

> >

> >

> Haven

> >

>