Introduction

[Guest guest]

gotta be old and cynical to stomache 'em.

LOL that's true and I have old and cynical down pat considering what we have

been through and what we have watched my son go through over the last 20 years!

thanks for the update and info on the book. I will be sure to read it when it

comes out! 

Jan Randall

Parent Resource Specialist

Community Autism Resources

Check our web site:

www.community-autism-resources.org

Re: Introduction

Mu husband's book is " is Extra-Special: A Book About Autism

for Children " --I begain mine about 5 years ago, when Russ aged out

of school, figuring I would have much more time (yeah, right)and am

just about finished. I only thought about doing it because every

time I went to an national autism conference, someone would ask me

about and at a conference in 1999, a friend from our state

society suggested I wirte a book, You can get our book on Amazon or

perhaps in your library--it's in its third printing! My book is a

collection of essays ( it didn't start out that way!)about various

things, every thing from guilt ('natch)to how we handle holidays

(I'll post that essay on Sunday), to a wonderful, normal day that

was so special in my children's childhoods. It's about a little bit

of everything you can think of. I don't pull punches, either,

especially about some of the things especially associated with the

autism " Refrigerator Mother " , 'it's the mother's fault " stuff. That

may not be of interest to anyone except those with kids with autism!

I remember the first time I read the Holland thing in the fall of

1987 (my memories of reading it are in the book, too!). was

7, and my husband was a resident at the U of Chicago. I think it

was in Ann Landers column (or was it Abby?)and I read it and wept.

I clipped it out and it remained on the bulletin board in my kitchen

until it fell apart and replaced the next time she printed it.

There's a " Holland, Schmolland " --or something like that and a bunch

of copycat ones. You may not be ready to read those--gotta be old

and cynical to stomache 'em.

Glad you're here, as long as you know what's up.

Marie

> > > > >

> > > > > Hi,

> > > > >

> > > > > I recently joined this group and wanted to share why I'm

> > here.

> > > My

> > > > 4

> > > > > 1/2 year old son has an undiagnosed syndrome. He

has

> > > > > microcephaly, GERD, low muscle tone, bilateral ptosis

> > (corrected

> > > > > with surgery), bilateral clubfeet (corrected with

surgeries,

> > > > casting,

> > > > > braces), left kidney has hydronephrosis due to Grade 3

> reflux,

> > > > right

> > > > > kidney had cysts on the upper 20% which turned to scar

tissue

> > and

> > > > it

> > > > > has reflux as well (this kidney is small and doesn't

function

> > > very

> > > > > well), undescended testes (corrected with surgery), small

for

> > his

> > > > > age, global developmental delays (developmentally that of

an

> > 18-

> > > > 24

> > > > > month old and he has moderate to severe MR), autistic

> > tendencies

> > > > (but

> > > > > not autistic because he's extremely social...per numerous

> > > > doctors),

> > > > > epicanthal folds, hypoplastic nails, curved pinkes,

> > overlapping

> > > > toes,

> > > > > and the list goes on.

> > > > >

> > > > > The doctors have done many tests on him and everything

comes

> > back

> > > > > normal. So he is our mystery boy.

> > > > >

> > > > > is absolutely adorable. He is able to walk

(although

> he

> > > > does

> > > > > have a wide gait, falls often and tires easily). He knows

> > some

> > > > sign

> > > > > language, is trying to talk but cannot make many sounds so

> his

> > > > words

> > > > > are approximations and only understood by those very close

to

> > > him,

> > > > > and he's working with a Might Mo (although he still looks

at

> > it

> > > > as a

> > > > > toy). He loves people...he waves hi and blows kisses to

> > > everybody

> > > > > (especially strangers)....it's sweet and people are drawn

to

> > him

> > > > > because of this. However, it's scary that he's so willing

to

> > go

> > > > with

> > > > > a stranger.

> > > > >

> > > > > I dearly love my sweet . He has taught me so much

and

> > has

> > > > > brought us so much joy.

> > > > >

> > > > > Thanks for reading,

> > > > >

> > > > > St Clair County

> > > > >

> > > >

> > >

> >

>

________________________________________________________________________

Email and AIM finally together. You've gotta check out free AOL Mail! -

http://mail.aol.com

[Guest guest]

Hi Marie

You may absolutely give my e-mail address to that Mom. yeah it's a weird thing

that strep induced Tourettes. The woman who diagy son was an expert on the

disorder and one of the things she did was do an IN DEPTH intake. I had t get

informaiton on specific health issues of my parents, their parents and siblings

and my own siblings. (That was fun because my dad is the youngest of 12!) I was

calling Aunts and unlces like crazy. Turned out we had A LOT of autoimmune

disorders in our family including my Mom having syndhams correa (a cousin of

strep induced tourettes)?as a child!

The agency I work for is Community Autism

Resources,?www.community-autism-reosurces.org

We provide free informaiton resources, referals, information, trainings and

private appointments for families of children and adults with Autism Spectrum

Disorders in 85 cities and towns in South eastearn massachusettes. We serve over

1,600 families right now.

Just let me know about the other Mom, I'd be happy to talk/e-mail with her.

Jan Randall

Parent Resource Specialist

Community Autism Resources

Check our web site:

www.community-autism-resources.org

Re: Introduction

Jan, what agency was it? It's everywhere! I think I read that sibs

book when it came out--it was very good. We try to keep on top of

other children's books on autism. Chuck may update the resources at

the end of his book when mine is published but that seems to be the

only thing out of date with hsi book.

I want to ask you if I may give your e-mail addy to a mom with child

with autism who has suddenly developed " vocal tics " (he's 13, I

think)on another autism news list? I suggested Tourettes but

everyone pooh-poohed me saying it's gotta be because of strep--I

think it's interesting we both may be correct. I think she needs to

explore the Tourettes angle. I may invite the mom to join IPADD

just so she can connect with you!

Marie

>

>

> In a message dated 11/22/2007 8:24:36 P.M. Eastern Standard Time,

> ludwig33@... writes:

>

> " is STILL Extra-Special: A Book

> About an Autism Journey " .

> I know your husbands book! We have it in the library at the

autism agency

> where I have worked for 13 years. It was one of the first

children's books we

> had I think.

> My daughter took part in writing what I think is a wonderful

children's book

> called In Our Own Words: Stories by Brothers and Sisters of

children with

> Autism. She was 12 when she wrote her story for the book. 11

other children

> shared their stories too.

> My Andy is 22 and for years I have wanted to write a book about

our

> experiences with him having Autism, then developing Strep induced

Tourettes just

> before he turned 11 and finally getting a diagnosis of Bipolar at

age 12 1/2. We

> have had a very rocky journey at times and having a child with

multiple

> diagnosis, especially bipolar turns the whole Autism thing on

it's head.

> Well, maybe someday...

>

> Oh and good luck with your book. I will be looking for it when it

comes out!!

>

> Jan

>

>

>

>

>

> **************************************Check out AOL's list of

2007's hottest

> products.

> (http://money.aol.com/special/hot-products-2007?

NCID=aoltop00030000000001)

>

>

>

[Guest guest]

Actually I would like to add a note to this. is very good at answering questions and is very helpful. It is just very hard to get a hold of the profesionals that conduct the conferences and workshops. But the program is great. DaliaDalia Chavarin <dchavarin1@...> wrote: Hi Mohinder, I have a son with Angelman syndrome and I have tried the Masgutova method. It is a good method/therapy. I was very excited to try this method and it has improved my son's mobility. The only thing I have not liked is the fact that I after taking the course, I have questions here and there and I find it hard to get any response from the group and from the professionals. I think even after you take the course you need to keep in

touch with a therapist that is in to this method and brain gym who will help you and guide you afterwards.Mohinder Chopra <mpschopra@...> wrote: Hi All, Please anybody respond who has tried Masgutova method for their kids with special needs. I need a parent reference before I dive into this. My contact is 9492324311 Mohinder

Chopra Mohinder Chopra From: Colleen Gannon <cbgannonbellsouth (DOT) net>Subject: Introduction Date: Tuesday, May 13, 2008, 7:58 AM Hi everyone. My name is Colleen and I am the mother of Aidan, a 31 month old boy, who suffered a brain injury when he was accidentally left in a car for 4 hours when he was 10 months old. We live in New Orleans, and have a 14 month old daughter as

well.Aidan presents very much like a child with CP and his motor function is greatly impaired. He has full body hypotonia with an overlay of high tone in arms/hands; legs/feet. He does not sit, crawl, walk etc. He has very pronounced ATNR reflex and also other reflexes that interfere with his movement, so i would like to learn more about the method and to know whether it has helped others.We have done HBOT (80 dives); Stem cell therapy in Russia; Traditional PT, OT Speech; CCDT therapy; and right now Aidan is in his third week of suit therapy at Therapies4Kids.We have not seen any dramatic improvement from any of the above.Colleen

[Guest guest]

Dear Mohinder,

I am located in Singapore. I will attend the Canada's camp in August 2008.

Rgds

Yonie

[childrenwithchalle nges] Introductionchildrenwithchallen gesgroups (DOT) comDate: Tuesday, May 13, 2008, 7:58 AM

Hi everyone. My name is Colleen and I am the mother of Aidan, a 31 month old boy, who suffered a brain injury when he was accidentally left in a car for 4 hours when he was 10 months old. We live in New Orleans, and have a 14 month old daughter as well.Aidan presents very much like a child with CP and his motor function is greatly impaired. He has full body hypotonia with an overlay of high tone in arms/hands; legs/feet. He does not sit, crawl, walk etc. He has very pronounced ATNR reflex and also other reflexes that interfere with his movement, so i would like to learn more about the method and to know whether it has helped others.We have done HBOT (80 dives); Stem cell therapy in Russia; Traditional PT, OT Speech; CCDT therapy; and right now Aidan is in his third week of suit therapy at Therapies4Kids.We have not seen any dramatic improvement from any of the

above.Colleen

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new

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[Guest guest]

Hello, my name is Mischelle and I am the mother of a 14 year old daughter. We live in Indianapolis Indiana. She has been diagonised with ADHD and ODD since she was 5. There was also mention of Asperburgers syndrome. These last few months have been awful, I really feel as though I am going to lose my mind. She is constantly fighting with someone in the house, it has gotten so bad that CPS was out at my home because of false alligations she made. She is constantly cursing at me telling me that I am not her mom, she calls me stupid, I really don't know how much more I can take. If anyone has any suggestions I would really appreciate it. I have been thinking that maybe she would benefit better if she were put somewhere, and taken out of the home. I am sure it would be alot more peaceful.Lost

parentMischelle

[Guest guest]

Hi Mischelle, I feel your pain and the situation can be exhausting. I too had a child who was constantly angry and resistant. As time progressed I realized that a lot of her symptoms were a result of the stress that she was constantly going thru' on a daily basis. This is the way our children cry out for help. I do hope you have some family or other people around you who can support you with your situation so that you can take some time for your self.

I am not sure if your daughter has any allergies, sleep issues etc. I found that taking care of my child's biochemistry issues helped lower her stress levels to an extent that I actually saw her being happy - something I had not seen for a long time. Once the bio-chemistry (toxins, malabsorption issues, sleep issues etc.) is some what under control the other therapies seem to be more effective. You probably read about all this in a recent post.

Masgutova reflex integration therapy also helps a lot in calming and de-stressing the kids a lot, so that they are finally ready to reason and grow rather than stay in a protective fight or flight state. All the best to you. I hope that you and your daughter grow to have a loving relationship here on out.

Best wishes,NeemunOn Tue, Mar 17, 2009 at 5:09 PM, Mischelle Bilyeu <mischelebilyeu@...> wrote:

Hello, my name is Mischelle and I am the mother of a 14 year old daughter. We live in Indianapolis Indiana. She has been diagonised with ADHD and ODD since she was 5. There was also mention of Asperburgers syndrome. These last few months have been awful, I really feel as though I am going to lose my mind. 

She is constantly fighting with someone in the house, it has gotten so bad that CPS was out at my home because of false alligations she made. She is constantly cursing at me telling me that I am not her mom, she calls me stupid, I really don't know how much more I can take. If anyone has any suggestions I would really appreciate it. I have been thinking that maybe she would benefit better if she were put somewhere, and taken out of the home. I am sure it would be alot more peaceful.

Lost

parentMischelle

[Guest guest]

Hi

My name is a. If you don't mind, I would like the information for your fabulous nutritionist. Thank you very much.

In a message dated 3/20/2009 8:24:18 PM Pacific Daylight Time, cmc14620@... writes:

Jen,

I know you did not direct this question to me, but I’d like to respond. There are very few people who truly understand how the “gut†affects the body and brain function. There are simple tests that can be run to determine whether you are allergic or sensitive to various foods. My family sees a fabulous nutrionist who is well versed in what type of testing is needed, what foods and products help various “issuesâ€, and the environmental factors to consider as well. We are located in the Northern California and if you’d like this nutrionist’s information please let me know.

Best of luck to you,

Chris

Feeling the pinch at the grocery store? Make dinner for $10 or less.

[Guest guest]

Dear Neemun-What specialists do you recommend we see to diagnose/treat such biological issues that may exist for our child? We cannot get clarity on whether avoiding wheat/dairy help or are irrelevant, etc. Traditional allergy testing found nothing. Thank you.Jen

Hello, my name is Mischelle and I am the mother of a 14 year old daughter. We live in Indianapolis Indiana. She has been diagonised with ADHD and ODD since she was 5. There was also mention of Asperburgers syndrome. These last few months have been awful, I really feel as though I am going to lose my mind.

She is constantly fighting with someone in the house, it has gotten so bad that CPS was out at my home because of false alligations she made. She is constantly cursing at me telling me that I am not her mom, she calls me stupid, I really don't know how much more I can take. If anyone has any suggestions I would really appreciate it. I have been thinking that maybe she would benefit better if she were put somewhere, and taken out of the home. I am sure it would be alot more peaceful.

Lost

parentMischelle

[Guest guest]

Jen,

I know you did not direct this question to

me, but I’d like to respond. There are very few people who truly understand

how the “gut” affects the body and brain function. There are

simple tests that can be run to determine whether you are allergic or sensitive

to various foods. My family sees a fabulous nutrionist who is well versed

in what type of testing is needed, what foods and products help various “issues”,

and the environmental factors to consider as well. We are located in the Northern California and if you’d like this

nutrionist’s information please let me know.

Best of luck to you,

Chris

From: [mailto: ] On Behalf Of Jen Cote

Sent: Friday, March 20, 2009 6:39

PM

Subject: Re:

RE: Introduction

Dear Neemun-

What specialists do you recommend we see to diagnose/treat such biological

issues that may exist for our child? We cannot get clarity on whether

avoiding wheat/dairy help or are irrelevant, etc. Traditional allergy

testing found nothing. Thank you.

Jen

Hello, my name is Mischelle and I am the mother of a

14 year old daughter. We live in Indianapolis

Indiana. She has been

diagonised with ADHD and ODD since she was 5. There was also mention of

Asperburgers syndrome. These last few months have been awful, I really feel

as though I am going to lose my mind.

She is constantly fighting with someone in the house,

it has gotten so bad that CPS was out at my home because of false

alligations she made. She is constantly cursing at me telling me that I am

not her mom, she calls me stupid, I really don't know how much more I can

take. If anyone has any suggestions I would really appreciate it. I have

been thinking that maybe she would benefit better if she were put

somewhere, and taken out of the home. I am sure it would be alot more

peaceful.

Lost parent

Mischelle

[Guest guest]

Her name is Kathy

Kaufmann and her company is Nutrition Solutions. Her phone

is 408-358-5540. She’s in San

next to Good Samaritan Hospital.

From: [mailto: ] On Behalf Of ERad777@...

Sent: Friday, March 20, 2009 9:53

PM

Subject: Re:

RE: Introduction

Hi

My name is a. If you don't

mind, I would like the information for your fabulous nutritionist. Thank

you very much.

In a message dated 3/20/2009 8:24:18 PM

Pacific Daylight Time, cmc14620sbcglobal (DOT) net writes:

Jen,

I know you did not direct this question to me, but I’d like

to respond. There are very few people who truly understand how the “gut”

affects the body and brain function. There are simple tests that can be

run to determine whether you are allergic or sensitive to various foods.

My family sees a fabulous nutrionist who is well versed in what type of testing

is needed, what foods and products help various “issues”, and the environmental

factors to consider as well. We are located in the Northern

California and if you’d like this nutrionist’s information

please let me know.

Best of luck to you,

Chris

Feeling the pinch at the grocery store? Make dinner

for $10 or less.

[Guest guest]

Hi Jen, We are still working on our issues so I can only tell you as much as I know from our experience till now. There are many different types of specialists out there who can help you figure out some of this maze. What you choose would finally depend on your comfort level with the particular type of intervention.

I am not sure where you are from but while you try and locate some one to help you with this you could look into the 'Gut and Psychology Syndrome " - it was mentioned a few emails earlier in this post. It is based on the SCD diet and can be a good tool to help you get started. Some people have also tried " Is this your Child? " by Dr. Doris Rapp and found success.

As I had mentioned there are many different types of specilaists - DAN doctors, Naturopaths, Nutritionists, Homeopaths, Bio-feedback Specialists (many different types here too), Traditional Chinese Medicine, and Ayurveda (a traditional system of medicine from India.) If you have some people in your area (since I don't know where you live) who are in the same boat as you and have tried some of these alternate therapies you could ask them for their opinion on their experiences and then possibly choose one.

As for our own journey, we had the same problem of all allergy tests coming out negative and yet the doctors admitting that she had allergies. But what was the biggest concern was that the medicines they prescribed were causing her serious side-effects and not helping with the allergies at all. That is when I decided to move away from chemicals and do herbal. We have been using Ayurveda, TCM, Homeopathy, NES etc.

As for the Reflex Integration work, I found that it helped to do the daily Foot Tendon Guard and Embracing technique AND if I kept my child away from gluten, casein and sugar the effect seemed even more.Hope this helped.

NeemunOn Fri, Mar 20, 2009 at 6:39 PM, Jen Cote <zenjenb@...> wrote:

Dear Neemun-What specialists do you recommend we see to diagnose/treat such biological issues that may exist for our child?  We cannot get clarity on whether avoiding wheat/dairy help or are irrelevant, etc.  Traditional allergy testing found nothing.  Thank you.

Jen

Hello, my name is Mischelle and I am the mother of a 14 year old daughter. We live in Indianapolis Indiana. She has been diagonised with ADHD and ODD since she was 5. There was also mention of Asperburgers syndrome. These last few months have been awful, I really feel as though I am going to lose my mind. 

She is constantly fighting with someone in the house, it has gotten so bad that CPS was out at my home because of false alligations she made. She is constantly cursing at me telling me that I am not her mom, she calls me stupid, I really don't know how much more I can take. If anyone has any suggestions I would really appreciate it. I have been thinking that maybe she would benefit better if she were put somewhere, and taken out of the home. I am sure it would be alot more peaceful.

Lost

parentMischelle

[Guest guest]

Hi Jen,Thought this additional information might also help while you decide which type of therapist you go with. DAN doctors, Nutritionist, Naturopaths, some Homeopaths - use blood, stool, urine, hair test to help diagnose.

Bio-feedback - the patient is typically connected to a machine which then gives a read out on what is actually happening in the body. TCM and  Ayurveda - use Pulse reading as the tool to diagnose what is going on in the body.

The above information is to the best of my knowledge  - make sure to double-check and confirm everything yourself. Best of luck.Neemun On Sat, Mar 21, 2009 at 12:35 PM, Neemun Anand <neemun@...> wrote:

Hi Jen, We are still working on our issues so I can only tell you as much as I know from our experience till now. There are many different types of specialists out there who can help you figure out some of this maze. What you choose would finally depend on your comfort level with the particular type of intervention.

I am not sure where you are from but while you try and locate some one to help you with this you could look into the 'Gut and Psychology Syndrome " - it was mentioned a few emails earlier in this post. It is based on the SCD diet and can be a good tool to help you get started. Some people have also tried " Is this your Child? " by Dr. Doris Rapp and found success.

As I had mentioned there are many different types of specilaists - DAN doctors, Naturopaths, Nutritionists, Homeopaths, Bio-feedback Specialists (many different types here too), Traditional Chinese Medicine, and Ayurveda (a traditional system of medicine from India.) If you have some people in your area (since I don't know where you live) who are in the same boat as you and have tried some of these alternate therapies you could ask them for their opinion on their experiences and then possibly choose one.

As for our own journey, we had the same problem of all allergy tests coming out negative and yet the doctors admitting that she had allergies. But what was the biggest concern was that the medicines they prescribed were causing her serious side-effects and not helping with the allergies at all. That is when I decided to move away from chemicals and do herbal. We have been using Ayurveda, TCM, Homeopathy, NES etc.

As for the Reflex Integration work, I found that it helped to do the daily Foot Tendon Guard and Embracing technique AND if I kept my child away from gluten, casein and sugar the effect seemed even more.Hope this helped.

NeemunOn Fri, Mar 20, 2009 at 6:39 PM, Jen Cote <zenjenb@...> wrote:

Dear Neemun-What specialists do you recommend we see to diagnose/treat such biological issues that may exist for our child?  We cannot get clarity on whether avoiding wheat/dairy help or are irrelevant, etc.  Traditional allergy testing found nothing.  Thank you.

Jen

Hello, my name is Mischelle and I am the mother of a 14 year old daughter. We live in Indianapolis Indiana. She has been diagonised with ADHD and ODD since she was 5. There was also mention of Asperburgers syndrome. These last few months have been awful, I really feel as though I am going to lose my mind. 

She is constantly fighting with someone in the house, it has gotten so bad that CPS was out at my home because of false alligations she made. She is constantly cursing at me telling me that I am not her mom, she calls me stupid, I really don't know how much more I can take. If anyone has any suggestions I would really appreciate it. I have been thinking that maybe she would benefit better if she were put somewhere, and taken out of the home. I am sure it would be alot more peaceful.

Lost

parentMischelle

[Guest guest]

Hi Jen,Thought this additional information might also help while you decide which type of therapist you go with. DAN doctors, Nutritionist, Naturopaths, some Homeopaths - use blood, stool, urine, hair test to help diagnose. Bio-feedback - the patient is typically connected to a machine which then gives a read out on what is actually happening in the body. TCM and Ayurveda - use Pulse reading as the tool to diagnose what is going on in the body. The above information is to the best of my knowledge - make sure to double-check and confirm everything yourself. Best of luck.Neemun

On Sat, Mar 21, 2009 at 12:35 PM, Neemun Anand <neemungmail> wrote:

Hi Jen, We are still working on our issues so I can only tell you as much as I know from our experience till now. There are many different types of specialists out there who can help you figure out some of this maze. What you choose would finally depend on your comfort level with the particular type of intervention. I am not sure where you are from but while you try and locate some one to help you with this you could look into the 'Gut and Psychology Syndrome" - it was mentioned a few emails earlier in this post. It is based on the SCD diet and can be a good tool to help you get started. Some people have also tried "Is this your Child?" by Dr. Doris Rapp and found success.As I had mentioned there are many different types of specilaists - DAN doctors, Naturopaths, Nutritionists, Homeopaths, Bio-feedback Specialists (many different types here too), Traditional Chinese Medicine, and Ayurveda (a traditional system of medicine from India.) If you have some people in your area (since I don't know where you live) who are in the same boat as you and have tried some of these alternate therapies you could ask them for their opinion on their experiences and then possibly choose one. As for our own journey, we had the same problem of all allergy tests coming out negative and yet the doctors admitting that she had allergies. But what was the biggest concern was that the medicines they prescribed were causing her serious side-effects and not helping with the allergies at all. That is when I decided to move away from chemicals and do herbal. We have been using Ayurveda, TCM, Homeopathy, NES etc. As for the Reflex Integration work, I found that it helped to do the daily Foot Tendon Guard and Embracing technique AND if I kept my child away from gluten, casein and sugar the effect seemed even more.Hope this helped. Neemun

On Fri, Mar 20, 2009 at 6:39 PM, Jen Cote <zenjenb > wrote:

Dear Neemun-What specialists do you recommend we see to diagnose/treat such biological issues that may exist for our child? We cannot get clarity on whether avoiding wheat/dairy help or are irrelevant, etc. Traditional allergy testing found nothing. Thank you.Jen

Hello, my name is Mischelle and I am the mother of a 14 year old daughter. We live in Indianapolis Indiana. She has been diagonised with ADHD and ODD since she was 5. There was also mention of Asperburgers syndrome. These last few months have been awful, I really feel as though I am going to lose my mind.

She is constantly fighting with someone in the house, it has gotten so bad that CPS was out at my home because of false alligations she made. She is constantly cursing at me telling me that I am not her mom, she calls me stupid, I really don't know how much more I can take. If anyone has any suggestions I would really appreciate it. I have been thinking that maybe she would benefit better if she were put somewhere, and taken out of the home. I am sure it would be alot more peaceful.

Lost parent

Mischelle

____________________________________________________________

Click now for great deals on quality business cards!

[Guest guest]

>

> I would like to introduce myself. My name is and I have a 9 year old

daughter with Down syndrome. We live in Tennessee and I am interested in

learning about Masgutova therapy. I would like to connect with other parents of

children with Ds and learn how this technique has impacted their lives.

>

Hi,

I just joined this group. I have 2 sons (12 and 13 yrs)with Down Syndrome.I

homeschool them. They have done a neurodevelopmental program in the past. As a

PT I see they have retained reflexes and am interested in learning this

technique.

Chana

[Guest guest]

Dear Parents and Specialists,

We plan to come to Asia - in September and next in December. We want to see and support the development of your greatest children! We highly respect and value your effort and interest to our Program! Our Program is growing strongly - new techniques and exercises are supprisingly effective... We creat them for children!

Glad to know that our Method will continue to develop in Asia. This year we also plan to visit Indonesia and also India.

With best regards,

Svetlana M asgutova.

From: Tricia Borsch <tspearfish@...> Sent: Mon, February 1, 2010 2:43:33 PMSubject: RE: Re: Introduction

It is exciting!!!! ! I don't know of her plans but you should check out the website and schedule that is posted on it....www.masgutova method.com - best wishes, Tricia

From: my2boyz3 <my2boyz3 (DOT) com>Subject: [childrenwithchalle nges] Re: Introductionchildrenwithchallen gesgroups (DOT) comDate: Sunday, January 31, 2010, 5:17 PM

Hi Tricia, It is nice to hear you had a good experience at the conference. Would you mind telling me about it. I have an 8 yr old son named n who has C.P. he was born 26 weeks gestation and had a severe bilateral brain bleed when he was 1 day old. He started walking at age 6 and i don't think he's stopped since (lol). He is nonverbal. I am interested in this method b/c n has so many abnormal body movements and the older and stronger he gets the more severe they are becoming. His most severe is crossing bent at his right elbo over to his left shoulder then he gets himself so tight in that position. He can do this for so long. I have a hard time pulling him from the position he has gotton so strong. His therapist don't have any answers which is why I am checking this it. Any information you have I would love to hear!Diane>> Hi, my name is Tricia Borsch. My daughter, Holly and I just returned from a Family Conference in CA with Svetlana. OH MY GOODNESS, what a life changing experience it was for both of us!!!!!> > Holly was diagnosed with Developmental Delays at age 3. Being a teacher for children with autism, I always thought that she was somewhere on the Spectrum but she was never diagnosed with it even though I asked many Drs. for their opinion. Svetlana proved to us that she has "characteristics of being on the spectrum" but it was really holding onto her primitive flexes. We saw and continue to see on an everyday basis so many changes. I have become the biggest advocate of this program and telling anyone and everyone that I know that have children with disabilities to

look into this program.> > Holly and I live in Tequesta, Florida - about 20 minutes north of West Palm Beach. We have 3 dogs and 2 cats. Anyone else in this area?> > Looking forward to being involved with this group.>

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[Guest guest]

Dear Svetlana,

we are eagerly waiting for your India visit.

regards

Anita Pandey

From: my2boyz3 <my2boyz3 (DOT) com>Subject: [childrenwithchalle nges] Re: Introductionchildrenwithchallen gesgroups (DOT) comDate: Sunday, January 31, 2010, 5:17 PM

Hi Tricia, It is nice to hear you had a good experience at the conference. Would you mind telling me about it. I have an 8 yr old son named n who has C.P. he was born 26 weeks gestation and had a severe bilateral brain bleed when he was 1 day old. He started walking at age 6 and i don't think he's stopped since (lol). He is nonverbal. I am interested in this method b/c n has so many abnormal body movements and the older and stronger he gets the more severe they are becoming. His most severe is crossing bent at his right elbo over to his left shoulder then he gets himself so tight in that position. He can do this for so long. I have a hard time pulling him from the position he has gotton so strong. His therapist don't have any answers which is why I am checking this it. Any information you have I would love to hear!Diane>> Hi, my name is Tricia Borsch. My daughter, Holly and I just returned from a Family Conference in CA with Svetlana. OH MY GOODNESS, what a life changing experience it was for both of us!!!!!> > Holly was diagnosed with Developmental Delays at age 3. Being a teacher for children with autism, I always thought that she was somewhere on the Spectrum but she was never diagnosed with it even though I asked many Drs. for their opinion. Svetlana proved to us that she has "characteristics of being on the spectrum" but it was really holding onto her primitive flexes. We saw and continue to see on an everyday basis so many changes. I have become the biggest advocate of this program and telling anyone and everyone that I know that have children with disabilities to

look into this program.> > Holly and I live in Tequesta, Florida - about 20 minutes north of West Palm Beach. We have 3 dogs and 2 cats. Anyone else in this area?> > Looking forward to being involved with this group.>

Express yourself instantly with MSN Messenger! MSN Messenger

[Guest guest]

Dear Brea -

It was such a pleasure meeting you and working with you in CA. Wow....what a wonderful experience that 10 days was!!!! I can't wait to attend another conference this summer - perhaps our paths will cross again. Holly is doing sooooo well - changes on a daily basis that are amazing.

Thanks for all you do and did - wish you the best - Give Margaret and a hug for us when you see them again...

Best regards, Tricia and Holly

From: breamaday <brea@...>Subject: Introduction Date: Wednesday, February 3, 2010, 11:14 PM

Hello Group!My name is Brea Maday and I am a speech/language pathologist and currently live and work in the Minneapolis, MN area. I took my first MNRI course in June 2009 from Pamela and in addition to taking other courses since that time have completed Associate 1 training at the MN Conference in July 2009 and Associate 2 training in Buena Park, CA in January, 2010.For the last 11 years, I have worked in a pediatric outpatient clinic and have a lot of experience working with children who have Autism Spectrum Disorders. Learning about MNRI and using in my daily practice has completely changed the way I work with my clients. The more I learn about the Svetlana's techniques, the more I want to learn.Svetlana, Pamela, and the Core Specialists from North America and Poland who are at the Family Conferences are amazing people. I look forward to learning more about MNRI and connecting with people through this

group.

[Guest guest]

Thx Keep forgetting The BsI wish there was a medication where we could squeeze 8 hrs of sleep into 4. Sent from my BlackBerry device on the Wireless NetworkFrom: <@...>Date: Wed, 14 Apr 2010 10:32:24 -0700 (PDT)< >Subject: Re: Introduction I read somewhere in my studies that gagging and taste sensitivity could be a b vitamin deficiency. Something to investigate. From: sleepietelus (DOT) net <sleepietelus (DOT) net>Subject: Re: Introduction Date: Wednesday, April 14, 2010, 3:22 AM Hello! My son Josh, 8 yrs old, is also an extremely picky eater. He gags at most foods. Following Masgutova camp, his range of taste expanded. We should say we also added zinc supplements. He regressed a bit when he caught a cold, but his desire to try new things came back a month later, to our great excitement. The camp and the hotel were incredibly accomodating when it came to diet--they even made chicken bone broth for him. Naturally Nova Scotia makes a greens powder with 44 vegetables, organic, gluten- and casein-free, with no sugar. We put it in his juice. Going organic in addition to gluten- and casein-free has been helpful. It's not a cure, but he isn't getting worse, either. Good luck! ine Sent from my BlackBerry device on the Wireless NetworkFrom: " " <collinsfour@ maine.rr. com> Date: Tue, 13 Apr 2010 20:24:29 -0400<CHILDRENWITHCHALLEN GESGROUPS (DOT) COM>Subject: [childrenwithchalle nges] Introduction Hi all.We have two children, the youngest, a girl diagnosed with ADHD and sensory integration disorder. We live in southern Maine and see a wonderful woman in Portland for Brain Gym that has helped tremendously. We had a session with Dr. Svetlana this month - absolutely amazing woman. We've heard about crainosacral massage but not sure of the technique. She goes to Occupational Therapy once a week and also receives OT at school. Our oldest child may benefit from some of the techniques we've already learned although she hasn't been tested formally - just mother's instinct! Dr. Svetlana gave us some dietary suggestions, which because of the picky nature of her appetite are proving challening. We'd like to connect with other parents for suggestions and support as we travel this journey. I found out about this group through Dr. Svetlana's site and in doing other searches.Thank you!

[Guest guest]

Me too! Looks like we are planning to attend camp in Kelowna in July after all. It's much less than travelling to FL. I am hoping to attend the latter camp.

From: sleepietelus (DOT) net <sleepietelus (DOT) net>Subject: Re: [childrenwithchalle nges] Introductionchildrenwithchallen gesgroups (DOT) comDate: Wednesday, April 14, 2010, 3:22 AM

Hello! My son Josh, 8 yrs old, is also an extremely picky eater. He gags at most foods. Following Masgutova camp, his range of taste expanded. We should say we also added zinc supplements. He regressed a bit when he caught a cold, but his desire to try new things came back a month later, to our great excitement. The camp and the hotel were incredibly accomodating when it came to diet--they even made chicken bone broth for him. Naturally Nova Scotia makes a greens powder with 44 vegetables, organic, gluten- and casein-free, with no sugar. We put it in his juice. Going organic in addition to gluten- and casein-free has been helpful. It's not a cure, but he isn't getting worse, either. Good luck! ine Sent from my BlackBerry device on the Wireless Network

From: " " <collinsfour@ maine.rr. com>

Date: Tue, 13 Apr 2010 20:24:29 -0400

<CHILDRENWITHCHALLEN GESGROUPS (DOT) COM>

Subject: [childrenwithchalle nges] Introduction

Hi all.

We have two children, the youngest, a girl diagnosed with ADHD and sensory integration disorder. We live in southern Maine and see a wonderful woman in Portland for Brain Gym that has helped tremendously. We had a session with Dr. Svetlana this month - absolutely amazing woman.

We've heard about crainosacral massage but not sure of the technique. She goes to Occupational Therapy once a week and also receives OT at school. Our oldest child may benefit from some of the techniques we've already learned although she hasn't been tested formally - just mother's instinct! Dr. Svetlana gave us some dietary suggestions, which because of the picky nature of her appetite are proving challening. We'd like to connect with other parents for suggestions and support as we travel this journey. I found out about this group through Dr. Svetlana's site and in doing other searches.

Thank you!

[Guest guest]

You are definitely in the right place. We started working with my son in December. His social skills were so bad (I think he is AS but not been formally diagnosed) It really kept me up at night. He had been obsessed with dinosaurs...he is an authority on dinosaurs. Funny we thought that was great...now I am understanding that the focus on one subject for years isn't normal....more in the Autistic/Aspergers range. None the less after doing the reflexes...he isn't interested in anything to the same degree he was into the dinosaurs...he likes Star Wars but it is not at the same level. And his social skills are tremendously improved. I am a part of a homeschooling group. Every summer I attend a 3 day seminar. Last year my husband had to leave work early and sit with him in the class

because he was so disruptive. This year (this week actually) I signed him up for the Logic class for his age group which I was praying wasn't a mistake...an academic atmosphere. I peaked in and he was sitting at the table writing...this is a kid who was licking the dry erase off his board last year and many other behaviors that made enemies for him with the instructor and students. It was so embarrassing last year to have such a disruptive child...this year...he was normal. Thank you Dr. Masgutova!!!! My son has a chance to grow into a normal functioning adult. The reflexes are like bathing in the Jordan river (from the Bible story). They look like they don't do much (like the muddy water of the Jordan river) but if you do the exercises as taught and persevere...you will be so happy...and more importantly your son will grow up and have the same

opportunities other kids do. Social awareness and appropriateness is sooo important. If it isn't there it really doesn't matter how smart you are. You will not get everything out of life God has for you.

[Guest guest]

Hi ,It's nice to know you on this group. My 10 yo son was diagnosed for AS and lately he has anxiety which is disruptive, when his portable dvd can't be turned on he will whimper and ask to fix it right away.When he wants to browse computer and not allowed, in the middle of the nite he woke up and said can't sleep then play computer (likely OCD).He would think towards facts and not easily accept the changes.We start working with my son about 2 months ago and hopefully he will get the improvements.Are there any recommendations for practioners in sydney? since we plan to bring my son there to see psychologist for assist my son for AS anxiety as well.RegardsIrwinSent from my BlackBerry®powered by Sinyal Kuat INDOSATFrom: Kayte <k_sisler@...>Sender: Date: Thu, 1 Jul 2010 11:46:34 -0700 (PDT)< >Reply Subject: Re: INTRODUCTION You are definitely in the right place. We started working with my son in December. His social skills were so bad (I think he is AS but not been formally diagnosed) It really kept me up at night. He had been obsessed with dinosaurs...he is an authority on dinosaurs. Funny we thought that was great...now I am understanding that the focus on one subject for years isn't normal....more in the Autistic/Aspergers range. None the less after doing the reflexes...he isn't interested in anything to the same degree he was into the dinosaurs...he likes Star Wars but it is not at the same level. And his social skills are tremendously improved. I am a part of a homeschooling group. Every summer I attend a 3 day seminar. Last year my husband had to leave work early and sit with him in the classbecause he was so disruptive. This year (this week actually) I signed him up for the Logic class for his age group which I was praying wasn't a mistake...an academic atmosphere. I peaked in and he was sitting at the table writing...this is a kid who was licking the dry erase off his board last year and many other behaviors that made enemies for him with the instructor and students. It was so embarrassing last year to have such a disruptive child...this year...he was normal. Thank you Dr. Masgutova!!!! My son has a chance to grow into a normal functioning adult. The reflexes are like bathing in the Jordan river (from the Bible story). They look like they don't do much (like the muddy water of the Jordan river) but if you do the exercises as taught and persevere...you will be so happy...and more importantly your son will grow up and have the sameopportunities other kids do. Social awareness and appropriateness is sooo important. If it isn't there it really doesn't matter how smart you are. You will not get everything out of life God has for you.

[Guest guest]

Hello .

Can you tell us what type of neuro-reflex therapy you have been doing with

your son. Thanks.

Joan

On Thu, August 26, 2010 01:47, Jeff wrote:

> Hello to the group,

>

>

> My name is and I am the parent of a 17 year old boy. My son has

> been diagnosed at one time or another ADHD, PDD-NOS, Asperger's, Autistic,

> Dyslexic,

> Auditory Processing, sensory integration, failure to thrive gluten and

> lactose intolerant, and a half dozen more I can't think of right now. I

> homeschool him as he would never survive in a public school setting. He's

> had many challenges over the years. We have participated in the biomedical

> approach to autism (DAN) and he is completely recovered now but still has

> some neurological damage. He's lost almost all his diagnosis.

>

> We've probably done just as many academic and neruo interventions. We've

> done two sound stimulation therapies (AIT and Samonas), Colored overlays,

>  HANDLE,

> Rhythmic Movement, BrainGym, Infinity Walk, mood-bell, Dyslexia

> intervention, Speech, OT, WriteBrain, orientation counseling, and so

> on. Before I discovered neuro-reflexes we were working on movement

> exercises and my son was exhibiting strange postural responses to some

> movements. His chin was thrusted out and his arms were so stiff. He would

> cry (age 14) when asked to walk in an infinity pattern. I figured there

> had to be something I was missing. Soon after that I found information on

> neuro-reflexes and took a class. Many of his physical issues disappeared

> after I had him doing neuro-reflex work for a bit. His muscle tone became

> strong and he suddenly wanted to go outside and be physically active. 

>

> My son continues to deal with writing issues and his dyslexia. I've heard

> of Dr. Masgutova and her work and want to learn more about it all.

>

>

>

>

[Guest guest]

Hi

I would highly recommend taking the MNRI Integration of Infant Dynamic and Postural Reflex Patterns

class and implementing the information from this exciting class.

I agree with Diane that rotations of the wrist (and fingers) from the MNRI Tactile Integration class would also be of great benefit.

Wishing you the best

Pamela

In a message dated 8/27/2010 6:51:07 P.M. Mountain Daylight Time, theparkersrus@... writes:

I've taken some training in Rhythmic Movement Training and a couple Neuro-Development classes that included some Brain Gym. We've also done HANDLE. I've worked with the ATNR, STNR, Moro, Palmer, Hand Pulling, Spinal Galant, a couple other hand/grip reflexes and others I can't think of now. We've done a lot of repatterning work, cross crawl activities and integrating activities. He has this odd stiffness in his wrist that doesn't seem to be addressed. He wants to hold his hand and the paper in the wrong position and his writing looks like that of a 3rd grader.There doesn't seem to be any classes or persons trained that are anywhere near me. I'm in the State of Washington.>> Hello .> Can you tell us what type of neuro-reflex therapy you have been doing with> your son. Thanks.> Joan> >

[Guest guest]

Hi Janet,while the family conferences are the ideal way to get trained, the courses are far less costly. You'll probably need to take more than one but one should be enough to start figuring out how to help your child. Good luck!Debby

From:

Janet Jacinto <jejacinto@...>;

To:

< >;

Subject:

Re: introduction

Sent:

Mon, Sep 13, 2010 10:48:09 AM

Hi Debbie

We live in Texas and were interested in the conference in June but could not afford the cost of it. Do you know of other more affordable ways to get trained, we have a toddler (2) whi has donw syndrome, we are doing the IAHP program along with homeopathy,any help- is greatly appreciated, blessings

Janet

From: Debby Gans <debgans@...>CHILDRENWITHCHALLENGESGROUPS (DOT) COMSent: Mon, September 13, 2010 7:38:34 AMSubject: introduction

My name is Debby Gans. I am mom to Benji, who is 6 and was diagnosed with PDD at 3 years old. We went to our first family conference this July and are planning to go again in January. The changes we have seen in the past few months are phenomenal. We have tried lots of therapies, both traditional and alternative. All have worked to some degree, but none with the rapid success of MNRI.

[Guest guest]

Dear Kathrin, welcome to our forum where I hope you will find

all the help and support you need. First, from reading what you have already

gone through with no help from the NHS, I would start off by writing a letter

to your doctor. Believe me, doctors pay a lot more attention to the written

word than they do to any conversations they have with their patients behind

closed doors - which they can easily 'forget'. Whenever you write a letter to

your doctor, make sure s/he sees that you have Cc'd it to the Head of Practice

and make sure you keep a copy yourself, in case you need to take action on this

at a later date, should your doctor try to ignore the requests you have made in

it.

First list all of your symptoms and signs. These you can check

against those in our web site www.tpa-uk.org.uk

under 'Hypothyroidism'. Signs are what your GP can readily see, such as puffy

eyes, losing outer third of your eyebrows, losing body and cranial hair, goitre

etc etc.

Next, having taken your basal temperature for 4/5 days before

getting out of bed in a morning, list these too. Normal temperature is 98.6. If

yours is 97.8 (and it could be very much less) make sure you tell your GP that

you are aware this is showing your metabolism is moving too slowly because you

may be suffering with hypothyroidism.

Next, list every single member of your family who has a thyroid

or autoimmune disease.

Next, ask for the following thyroid function tests which should

include TSH, free T4, free T3 and tests to see whether you have thyroid

antibodies - which is very likely as you have so many members of your family

with such problems. If your first antibody test comes back negative, insist that it

is done every couple of months, because any antibodies may have been 'inactive'

when you had your blood drawn, but may be highly 'active' when your blood is

drawn at another time. You may have to INSIST that this is done. Always

remember that the NHS doctor is employed to save his patients health and make her/him

well to the best of their ability - NOT to save their surgery money, but not

even bothering to do the required testing.

Next, ask your GP to check your levels of serum ferritin,

vitamin B12, vitamin D3, magnesium, folate, copper and zinc as every one of

these, if they are returned showing low levels within the reference range, will

render the thyroid hormone your thyroid might be producing as unable to be

fully utilised at cellular level. Any coming back low in the range, MUST be

supplemented.

Next, ask your GP to refer you to a specialist of your choice

and make it clear you want to see an endocrinologist who has a specialty in

thyroid disease, and not in diabetes. Not many diabetic specialists know a lot

about the functioning of the thyroid gland unfortunately. I have sent you a

list of doctors recommended by some of our members privately, so choose one

from there. You can be referred to who you like if they are NHS but privately,

you don't need a referral.

Last, send a copy to the Head of Practice and keep a copy for

yourself and post it off to her/him. Tell him/her you are no longer prepared to

continue to suffer without being given a proper diagnosis for your symptoms and

signs and need the correct therapy putting into place as soon as possible. Tell

him that had you lived in the US, you would have been given a proper diagnosis

and started on thyroid hormone replacement with a TSH level of 3.2 - and in

Germany, Belgium and Sweden, their TSH ref. range is 0.3 to 2/5 with a

recommendation this be dropped even further so again, you would have been

diagnosed long ago and started on treatment. It is NOT enough for a doctor to

tell us " Oh well - this is not what happens in the UK and you are

not living in those countries, so you have to follow what we do over

here " . Are they saying that how TSH works in other countries is wrong and

the UK is right. The difference is that over here, doctors are terrified of

working outside of the 'guidelines' 'guidance' 'statements' written by the BTA

and the RCP - which are none of these things in reality, what doctors are

following is the OPINION only of these organisations who are unable to back up

any single one of their statements by citing references to the scientific

evidence.

Be determined Kathrin - and you will get there.

BTW - you posted this to me and Lilian, but I think you meant it

to go onto the Forum, so I have forwarded it there.

Hope this helps.

Luv - Sheila

I

am pretty sure that my thyroid is not working properly. It is visibly enlarged,

and I have a family history of thyroid problems. My mother, grandmother and all

her sisters have had theirs removed, and my cousin was also diagnosed fairly

recently. I always have cold hands and feet, and am very sensitive to cold. I am

doing a postgraduate degree at the moment, but have a lot of problems

concentrating on the reading I have to do, despite it being of great interest

to me. I am really tired, especially in the mornings (although I used to be an

early riser), my eyelids are really swollen when I wake up. I get dizzy a lot.

I have other symptoms of hypothyroidism, especially emotional ones.