New member

[Guest guest]

Hi nna,

Welcome to the group!! It is a great group!!! I have learned so much here.

Blessings,

Granny to Matt and Will

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

In a message dated 4/16/2007 1:40:37 A.M. Eastern Daylight Time,

freddie5smommy@... writes:

My name is nna. I have a beautiful 5 yr old son Freddie. He has

been evaluated and I have been told he does not have the dual diagnoses

Despite the ruling out of autism, I am always weary of his odd

behaviors. I am interested in learning about the connection between the

two diagnoses. I hope at least to learn new things and be able to

contribute advice where I can. I also provide respite for a family who

has a boy with the diagnoses of autism (non DS). He is a sweet young

man and a great gift to all who know and love him.

Hi nna,

Welcome to the group. I am Donna, Mom to Madison (13, DS and autism),

and four other older ones. Keep searching if you think there's something

else going on. I had a psych tell me one time, that in his experience, he

almost never sees a person with just one dx. There's almost always

co-morbidity.

Donna

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hello Kathy,

Hellooooo and welcome to the list. I have 5 children, 4 girls and one boy.

His name is DJ and he's the reason I am in this group. He has DS and, we

believe, ASD. He is 11 years old. You will love being a part of this group.

It has helped me immensely!

Hugs,

Donnell (mom to DJ-age 11)

momkate@... wrote:

Hi!

I just wanted to briefly introduce myself and my family and thank you for

allowing me to be a part of your email list. I have SOOOO many questions,

but will sit back and watch conversations before I start in.

My name is Kathy and I am Mom to 6 incredible little stinkers. Three of my

children have autism (one yet to be formally dx'd), and two of those also

have down syndrome. We have many other diagnosis in our crew as well, but

I've found that the ASD has been the most challenging and the least

understood within the professional medical and educational communities.

I look forward to learning from all of you.

Kathy in St. Louis

[Guest guest]

Welcome ~

My son Dylan will be 12 on Monday, he has DS & Autism & type 1 diabetes, The

autism just diagnosed about a year ago, even though we suspected it since about

age 9. You will find good advice and support here.

Becky

Murray wrote:

Hi

I am a new member to the group. My son Callum, who is 6, was diagnosed with

Mosaic Downs at 3 and a half. At 5 he was diagnosed with ASD and referred

to an Autism Assessment Team. After further assessment they are now

backtracking on the ASD diagnosis, saying his social skills are too good to

allow a diagnosis of ASD. I can see where they are coming from, however do

not agree with their opinion. I now want to gather more information about

children with a DS-ASD diagnosis to gather evidence to back up my arguments.

I am hoping I can get some good info from this group and also share my

experiences as I am absolutely convinced the original dual diagnosis is the

correct one.

Regards

[Guest guest]

In a message dated 6/7/2007 4:23:03 P.M. Eastern Daylight Time,

ICANFIELD@... writes:

Please do share in regards to your discovery of the Miracle Belt,

curious to know what it does?

My son is dx with SPD.

'

+JMJ+

I googled Miracle Belt and found this site:

_http://www.miraclebelt.com/default.html_

(http://www.miraclebelt.com/default.html)

It is a weighted belt that the child wears.

Blessings, W

homeschooling Mom to AJ (12), (9), ^l^, (5,

Trisomy 18 mosaic AKA 's syndrome) and Birgitta (age 4, adoption

finalized 2/1/05 !!, Trisomy 21 AKA Down's Syndrome, Fetal Alcohol Syndrome,

Autism, SID)

************************************** See what's free at http://www.aol.com.

[Guest guest]

Welcome aboard Matt.

Please do share in regards to your discovery of the Miracle Belt,

curious to know what it does?

My son is dx with SPD.

What career choices you have traveled, good luck with your new

transition.

Irma,18,DS/ASD

>

> Hello everyone,

>

> I'm new to the group and would like to say hello. Let me tell

everyone a little bit about my self. I'm an ex-professional baseball

player of nine years and the inventor of a new sensory aid for

children called the Miracle Belt.

>

> This year has been pretty crazy making the transition from being a

professional athlete to a full time entrepreneur in a field where the

drug companies run the show. I'm learning to appreciate the little

things and make the best of every situation which comes my way.

Everything happens for a reason and I hope you all don't see me

coming on the board as an intrusion, I'm really here to help and hope

you all can see that.

>

> About a month ago Community Haven for Adulds and Children with

Disabilities in Sarasota, FL put me on their board of directors. It

has been a wonderful experience and I'm looking forward to making a

difference in my community.

>

> I'm glad I'm a part of the group and I thank Joan for allowing me

to say hello.

>

> Many Blessings,

>

> Matt

>

>

>

>

______________________________________________________________________

______________

> Moody friends. Drama queens. Your life? Nope! - their life, your

story. Play Sims Stories at Yahoo! Games.

> http://sims.yahoo.com/

>

>

[Guest guest]

Thank you , hmm a new item that I have never heard of and now I

have.

Irma

[Guest guest]

JMJ and group,

Thought you might want to see this. Here is a link to TV coverage about the

Miracle Belt which ran last night in Ft. Myers Florida.

http://www.winknews.com/features/health/7944072.html?video=pop & t=a

Many Blessings,

Matt

Re: Re: New Member

In a message dated 6/7/2007 4:23:03 P.M. Eastern Daylight Time,

ICANFIELDsatx (DOT) rr.com writes:

Please do share in regards to your discovery of the Miracle Belt,

curious to know what it does?

My son is dx with SPD.

'

+JMJ+

I googled Miracle Belt and found this site:

_http://www.miracleb elt.com/default. html_

(http://www.miracleb elt.com/default. html)

It is a weighted belt that the child wears.

Blessings, W

homeschooling Mom to AJ (12), (9), ^l^, (5,

Trisomy 18 mosaic AKA 's syndrome) and Birgitta (age 4, adoption

finalized 2/1/05 !!, Trisomy 21 AKA Down's Syndrome, Fetal Alcohol Syndrome,

Autism, SID)

************ ********* ********* ******** See what's free at http://www.aol.

com.

[Guest guest]

Irma & ,

Here is a link to some TV coverage about the Miracle Belt which ran last night.

http://www.winknews.com/features/health/7944072.html?video=pop & t=a

My transition has been kinda crazy, in a good way!!! I get an opportunity to

help millions, I'm very blessed. Everyday is something new and exciting. We

just switched our 1 -800 service last night to an in house service. So if you

call our toll free order line you will get me. I've learned many things

about the sensory field, and more Light is being shed everyday.

How long has your son been diagnosed with DS? What do you find helps him the

most?

Many Blessings,

Matt

Re: New Member

Welcome aboard Matt.

Please do share in regards to your discovery of the Miracle Belt,

curious to know what it does?

My son is dx with SPD.

What career choices you have traveled, good luck with your new

transition.

Irma,18, DS/ASD

>

> Hello everyone,

>

> I'm new to the group and would like to say hello. Let me tell

everyone a little bit about my self. I'm an ex-professional baseball

player of nine years and the inventor of a new sensory aid for

children called the Miracle Belt.

>

> This year has been pretty crazy making the transition from being a

professional athlete to a full time entrepreneur in a field where the

drug companies run the show. I'm learning to appreciate the little

things and make the best of every situation which comes my way.

Everything happens for a reason and I hope you all don't see me

coming on the board as an intrusion, I'm really here to help and hope

you all can see that.

>

> About a month ago Community Haven for Adulds and Children with

Disabilities in Sarasota, FL put me on their board of directors. It

has been a wonderful experience and I'm looking forward to making a

difference in my community.

>

> I'm glad I'm a part of the group and I thank Joan for allowing me

to say hello.

>

> Many Blessings,

>

> Matt

>

>

>

>

____________ _________ _________ _________ _________ _________ _

____________ __

> Moody friends. Drama queens. Your life? Nope! - their life, your

story. Play Sims Stories at Yahoo! Games.

> http://sims. yahoo.com/

>

>

[Guest guest]

<<Here is a link to some TV coverage about the Miracle Belt which ran last

night.

http://www.winknews.com/features/health/7944072.html?video=pop & t=a>>

Matt, what's the difference between this miracle belt and the various weighted

vests, blankets and belts that are sold in catalogs for sensory integration and

Autism?

Thanks

Sherry

[Guest guest]

Hi Matt,

Thank you very much for replying.

My son was born with Down syndrome, at the age of 13 dx with

autism at this time this open the door towards learning about one of

the interventions which was on sensory integration.

Once I found a good OT who specialized with SI, she had implemented a

sensory diet at home, school and out in the community.

It has made a huge positive impact for him and for us too as we could

go out and include on our outings, along with other issues

that we had to deal with.

My son is no longer seen by an OT but I have become a huge fan of SI

or nowadays called Sensory Process Disorder as I make sure that my

son receives any type of sensory & motor activities practically on a

daily basis.

This will also continue to being addressed once he ages out of the

school system too and I have become pretty involved when dealing with

the adult issues in our community.

There is really not much when this happens.

My son attends out at a University called a Movement Program just

about every semester for free where a professor has her students

working with the individuals with any type of disability. Its an

incredible program which incorporates when our individuals

experiences movement difficulties in one or more of the four basic

categories of movement. Perceptual skills, locomotor skills, object

control skills, & physical and motor fitness.

This has helped my son with the Special Olympics events and currently

when not under any underlying medical issues sign him up with the

Challengers Baseball league, he received a trophy for at least " great

participation " , to me this an accomplishment. Students will volunteer

their time and continue working with him. Just awesome.

My son is currently under vision therapy too, this is making sure on

a daily basis to implement the vestibular and propriospective system

on a daily basis. Just learning the basic of when he was in my womb

and then how he was delivered impacted his neurons and then of course

learning the ropes of the Alternative Bio-med intervention which has

also triggered the sensory process disorder.

When I am not implementing the sensory diet or on top of things like

with the school when he seeks alot of sensory input. I know he seeks

the deep pressure input and when the teacher reports something, it is

being a detective and sure enough he is usually seeking trying to get

that organization.

Can you believe on his IEP when he is near someone, this is placed on

his BIP as inappropriate touching or when wanting to give hugs or

removing some type of item away from another student to use to stim

with. The IEP team and even the school district OT still lacks this

area of learning on watching for these cues when he seeks this and of

course the other goal would be revolved around teaching him around

body awareness or redirecting him towards some sensory time.

Low motor skills can be a real problem.

There will be some hard data soon as I have heard at a wonderful

conference this past weekend which was on Sensory Integration Makes

Sense that some research are being done out in Denver.

You are on the right track to help many who seek this route.

When something like this is implemented what has helped the most fro

my son is that he is able to tolerate & generalize his surroundings

during our outings, he can tolerate haircuts, attend parties(social

events), visit with family and friends, attend church, he can

tolerate at doctor's visits, toilet trained (will not initiate)but

out of pull-ups and will get some sleep too, not under any meds (will

leave as a last resort), able to eat a variety of food as this was

another arena, oral motor activities like Oral Beckman implemented

(still grinds his teeth), have implemented the GF/CF diet and

supplements and currently under the IV Chelation, there are more but

for now will share this.

I better get, now that my son has snapped out of whatever he was

going through as he was experiencing alot of underlying medical

issues and with the assistance of having a wonderful team of medical

professionals working with him, finally.

I am returning to the ABA/VB intervention which has also made a huge

positive impact his way too and had to put this on halt and I could

see that this will help him tremendously once again.

I too, am curious to know the difference from the other SI tools.

Thanks,

Irma,son:18,DS/ASD

>

> Irma & ,

>

> Here is a link to some TV coverage about the Miracle Belt which ran

last night.

>

> http://www.winknews.com/features/health/7944072.html?video=pop & t=a

>

> My transition has been kinda crazy, in a good way!!! I get an

opportunity to help millions, I'm very blessed. Everyday is

something new and exciting. We just switched our 1 -800 service last

night to an in house service. So if you call our toll free order

line you will get me. I've learned many things about the sensory

field, and more Light is being shed everyday.

>

> How long has your son been diagnosed with DS? What do you find

helps him the most?

>

> Many Blessings,

>

> Matt

[Guest guest]

Sherry,

The similarities between the weighted sensory aids is that they work! Most of

the parents and therapists I work with rave about the effectiveness of weighted

blankets. Just yesterday a good friend of mine told me he's going to get one

for his daughter. The Miracle Belt is a great alternative to weighted vests and

other sensory aids in that it's positioned around the center of the body which

helps bring children into a more balanced position while providing all the other

benefits of weighted sensory aids. It is easy to put on and wear as well.

Also, the belt also costs 50% less than the vests. Here's what a therapist

(who purchased a Miracle Belt Therapy kit) told us yesterday.

" The sensory needs of autistic children is so incredible that I appreciate you

developing a smaller, less conspicuous version of the weighted vest. "

Cheryl Jue

If you have any other questions please let me know.

Have a great evening,

Matt

Re: Re: New Member

<<Here is a link to some TV coverage about the Miracle Belt which ran last

night.

http://www.winknews .com/features/ health/7944072. html?video= pop & t=a>>

Matt, what's the difference between this miracle belt and the various weighted

vests, blankets and belts that are sold in catalogs for sensory integration and

Autism?

Thanks

Sherry

[Guest guest]

Irma,

Thank you for sharing your story about your son. Sounds like you have learned a

lot! Who's doing the research out in Denver? Would be interesting to hear

about their findings. What position does your son enjoy playing in the

Challenger League?

Have a great evening,

Matt

Re: New Member

Hi Matt,

Thank you very much for replying.

My son was born with Down syndrome, at the age of 13 dx with

autism at this time this open the door towards learning about one of

the interventions which was on sensory integration.

Once I found a good OT who specialized with SI, she had implemented a

sensory diet at home, school and out in the community.

It has made a huge positive impact for him and for us too as we could

go out and include on our outings, along with other issues

that we had to deal with.

My son is no longer seen by an OT but I have become a huge fan of SI

or nowadays called Sensory Process Disorder as I make sure that my

son receives any type of sensory & motor activities practically on a

daily basis.

This will also continue to being addressed once he ages out of the

school system too and I have become pretty involved when dealing with

the adult issues in our community.

There is really not much when this happens.

My son attends out at a University called a Movement Program just

about every semester for free where a professor has her students

working with the individuals with any type of disability. Its an

incredible program which incorporates when our individuals

experiences movement difficulties in one or more of the four basic

categories of movement. Perceptual skills, locomotor skills, object

control skills, & physical and motor fitness.

This has helped my son with the Special Olympics events and currently

when not under any underlying medical issues sign him up with the

Challengers Baseball league, he received a trophy for at least " great

participation " , to me this an accomplishment. Students will volunteer

their time and continue working with him. Just awesome.

My son is currently under vision therapy too, this is making sure on

a daily basis to implement the vestibular and propriospective system

on a daily basis. Just learning the basic of when he was in my womb

and then how he was delivered impacted his neurons and then of course

learning the ropes of the Alternative Bio-med intervention which has

also triggered the sensory process disorder.

When I am not implementing the sensory diet or on top of things like

with the school when he seeks alot of sensory input. I know he seeks

the deep pressure input and when the teacher reports something, it is

being a detective and sure enough he is usually seeking trying to get

that organization.

Can you believe on his IEP when he is near someone, this is placed on

his BIP as inappropriate touching or when wanting to give hugs or

removing some type of item away from another student to use to stim

with. The IEP team and even the school district OT still lacks this

area of learning on watching for these cues when he seeks this and of

course the other goal would be revolved around teaching him around

body awareness or redirecting him towards some sensory time.

Low motor skills can be a real problem.

There will be some hard data soon as I have heard at a wonderful

conference this past weekend which was on Sensory Integration Makes

Sense that some research are being done out in Denver.

You are on the right track to help many who seek this route.

When something like this is implemented what has helped the most fro

my son is that he is able to tolerate & generalize his surroundings

during our outings, he can tolerate haircuts, attend parties(social

events), visit with family and friends, attend church, he can

tolerate at doctor's visits, toilet trained (will not initiate)but

out of pull-ups and will get some sleep too, not under any meds (will

leave as a last resort), able to eat a variety of food as this was

another arena, oral motor activities like Oral Beckman implemented

(still grinds his teeth), have implemented the GF/CF diet and

supplements and currently under the IV Chelation, there are more but

for now will share this.

I better get, now that my son has snapped out of whatever he was

going through as he was experiencing alot of underlying medical

issues and with the assistance of having a wonderful team of medical

professionals working with him, finally.

I am returning to the ABA/VB intervention which has also made a huge

positive impact his way too and had to put this on halt and I could

see that this will help him tremendously once again.

I too, am curious to know the difference from the other SI tools.

Thanks,

Irma,son:18, DS/ASD

>

> Irma & ,

>

> Here is a link to some TV coverage about the Miracle Belt which ran

last night.

>

> http://www.winknews .com/features/ health/7944072. html?video= pop & t=a

>

> My transition has been kinda crazy, in a good way!!! I get an

opportunity to help millions, I'm very blessed. Everyday is

something new and exciting. We just switched our 1 -800 service last

night to an in house service. So if you call our toll free order

line you will get me. I've learned many things about the sensory

field, and more Light is being shed everyday.

>

> How long has your son been diagnosed with DS? What do you find

helps him the most?

>

> Many Blessings,

>

> Matt

________________________________________________________________________________\

____

Sick sense of humor? Visit Yahoo! TV's

Comedy with an Edge to see what's on, when.

http://tv.yahoo.com/collections/222

[Guest guest]

>

> Irma,

>

> Thank you for sharing your story about your son. Sounds like you

have learned a lot! Who's doing the research out in Denver? Would be

interesting to hear about their findings. What position does your son

enjoy playing in the Challenger League?

>

> Have a great evening,

>

> Matt

Your welcome Matt. It has been a journey when having to wear many hats

to get things going on advocating for my son but times like these past

days are all well worth it.

I have been non-stop with since last Thursday with lots of

interaction with family and friends get-together watching the Spurs

Game, cooking out & had to involve some swimming to keep the motor

skills going. He was just awesome.

It is great to be able to observe this. Today he had actually shown

some remarkable steps towards vocalizing once again. He had lost over

200 words, finally he is coming out of his shell.

While in the pool, he told one of his cousin loud and clear and we all

had turn towards him since it has been awhile that he has said

anything, only using some kind of sound for yes and no.

Today he said " move, no, exuse me. "

What music to my ears once again so I will continue to move forward

with what I am doing.

We live out here in SA, so you can imagine how the city has been

celebrating with our all time 4 x Championship Basketball team.

was actually able to tolerate with all of this going on.

What joy! Had to brag.

I had posted an article from the NY Times:

The Disorder Is Sensory; the Diagnosis, Elusive

Speak about the timing of it.

Lucy J. , OT is conducting the research.

You will see some of the information on this article.

Excellent.

On the Challenger's League, it was bascially teaching him how to

understand some of the basic plays like batting and learning the next

steps of running towards the bases. He loved it!

Then he was placed as the Left field, was taught how to use the glove

which he was actually able to tolerate, then who to throw the ball to.

The smile on his face was all worth it. I really never would of imagine

him actually participating at all. Prove me wrong, he was ready for it.

Under photos there might be a pic of , under Canfield family.

Irma,18,DS/ASD

[Guest guest]

My child, now 22 loves praise and can imitate some actions and behaviors

BUT, when the ASD is in ascendency he could freeze as if he were in a

trance, tantrum for no observable reason, perseverate with a word or phrase

or a particular mechanical action, stim with an object or a body part, or

sit listening to one 3 second interval of tape.

Asperger is the high end of the ASD . Most people with ASPERGER'S are very

high functioning.

>

> Hi! I am new to the group and I have a daughter, , who is 8 and has

> Down syndrome. She has not yet been diagnosed with ASD but most people

> working with her thinks she has Asperger syndrome. I would love to talk to

> someone who has a child with this dual diagnosis to compare notes. It's hard

> to tell which of her behaviours are due to the Down syndrome and which are

> ASD. What confuses me is that she likes to be praised and she can imitate, 2

> things I never associated with ASD. I also have an older son, 17 who loves

> to bits. I look forward to sharing with you. Ann

>

>

[Guest guest]

Ann

My daughter Alina always had some stimming behaviors

as an infant she would stare at her hand and then she

overreacted to lots of sensory input both auditory and

visual. A lot of autism research is linking this

early behavior to the impurities in immunizations and

the inability to deal with this, pesticides, junk

food, etc. but that is not the only thing. My

daughter started getting worse in first grade after

her bout with strep and scarlet fever. That is the

other part of the theory that people with autism have

problems getting rid of virus and bacteria and it

accumulates in the gut or brain and cause gradual

deterioration if not addressed. We are taking the

healthy route and trying to clean up everything in the

environment first and then clean up the food to

improve nutrition and then we clean up the body with

anti candida things (not drugs) and good probiotics

for the gut. Finally a detox of chemicals,etc. will

be done to get rid of excess metals, etc. we have

only been on this path for a few weeks so I will let

everyone know if and when it works ( I am thinking

positive).

Sharon

--- Sara Cohen wrote:

> My child, now 22 loves praise and can imitate some

> actions and behaviors

> BUT, when the ASD is in ascendency he could freeze

> as if he were in a

> trance, tantrum for no observable reason,

> perseverate with a word or phrase

> or a particular mechanical action, stim with an

> object or a body part, or

> sit listening to one 3 second interval of tape.

>

> Asperger is the high end of the ASD . Most people

> with ASPERGER'S are very

> high functioning.

>

>

>

> >

> > Hi! I am new to the group and I have a daughter,

> , who is 8 and has

> > Down syndrome. She has not yet been diagnosed with

> ASD but most people

> > working with her thinks she has Asperger syndrome.

> I would love to talk to

> > someone who has a child with this dual diagnosis

> to compare notes. It's hard

> > to tell which of her behaviours are due to the

> Down syndrome and which are

> > ASD. What confuses me is that she likes to be

> praised and she can imitate, 2

> > things I never associated with ASD. I also have an

> older son, 17 who loves

> > to bits. I look forward to sharing with you.

> Ann

> >

> > [Non-text portions of this message have been

> removed]

> >

> >

> >

>

>

>

> --

> Sara - Life is a journey- we choose the path.

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Luggage? GPS? Comic books?

Check out fitting gifts for grads at Yahoo! Search

http://search.yahoo.com/search?fr=oni_on_mail & p=graduation+gifts & cs=bz

[Guest guest]

My son Andy, now 26 was first observed to have autistic tendencies after heart

surgery at 14 months. The surgery got infected, he blew up like a balloon, and

was treated with high potency antibiotic's for four months. He was opened up

10 days after the surgery and left to heal from the inside out..at first there

were every 4 hour dressing changes. It was awful. I can't imagine his pain and

stress. When he came " out " of this ordeal, he was a different fellow...affected

by autism. So I personally feel that trauma has some part in it, for Andy at

least.

Brigid

Re: new member

Ann

My daughter Alina always had some stimming behaviors

as an infant she would stare at her hand and then she

overreacted to lots of sensory input both auditory and

visual. A lot of autism research is linking this

early behavior to the impurities in immunizations and

the inability to deal with this, pesticides, junk

food, etc. but that is not the only thing. My

daughter started getting worse in first grade after

her bout with strep and scarlet fever. That is the

other part of the theory that people with autism have

problems getting rid of virus and bacteria and it

accumulates in the gut or brain and cause gradual

deterioration if not addressed. We are taking the

healthy route and trying to clean up everything in the

environment first and then clean up the food to

improve nutrition and then we clean up the body with

anti candida things (not drugs) and good probiotics

for the gut. Finally a detox of chemicals,etc. will

be done to get rid of excess metals, etc. we have

only been on this path for a few weeks so I will let

everyone know if and when it works ( I am thinking

positive).

Sharon

--- Sara Cohen wrote:

> My child, now 22 loves praise and can imitate some

> actions and behaviors

> BUT, when the ASD is in ascendency he could freeze

> as if he were in a

> trance, tantrum for no observable reason,

> perseverate with a word or phrase

> or a particular mechanical action, stim with an

> object or a body part, or

> sit listening to one 3 second interval of tape.

>

> Asperger is the high end of the ASD . Most people

> with ASPERGER'S are very

> high functioning.

>

>

>

> >

> > Hi! I am new to the group and I have a daughter,

> , who is 8 and has

> > Down syndrome. She has not yet been diagnosed with

> ASD but most people

> > working with her thinks she has Asperger syndrome.

> I would love to talk to

> > someone who has a child with this dual diagnosis

> to compare notes. It's hard

> > to tell which of her behaviours are due to the

> Down syndrome and which are

> > ASD. What confuses me is that she likes to be

> praised and she can imitate, 2

> > things I never associated with ASD. I also have an

> older son, 17 who loves

> > to bits. I look forward to sharing with you.

> Ann

> >

> > [Non-text portions of this message have been

> removed]

> >

> >

> >

>

>

>

> --

> Sara - Life is a journey- we choose the path.

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

Luggage? GPS? Comic books?

Check out fitting gifts for grads at Yahoo! Search

http://search.yahoo.com/search?fr=oni_on_mail & p=graduation+gifts & cs=bz

[Guest guest]

" ...she likes to be praised and she can imitate "

Ann, Janie is 8 and has DS and PDD-NOS. She also loves being praised

and she is extremely imitative. She copies all kinds of sounds as well

as actions. She watches what other people do very intensely and

surprises me all the time by doing things I didn't expect. One example

is she loves French toast. One day out of the blue she got out the pan

I use, the bowl I use to mix the egg batter, and a fork, grabbed my

hand and took me to it, and said, " French toast " . She listens to music

cds and the radio and quickly learns the words to songs. Nobody has

suggested Asbergers, but I have thought these behaviors certainly

reflect some of that. She is smart and stubborn and has a lot of

issues with sensory/aggression. Does your DD have those qualities?

Welcome to the group!

P.

[Guest guest]

Wow sounds like both physical and emotional trauma for

your son, it must have been awful watching him go

through this. We are doing EFT, Emotional Freedom

Technique to help with emotions and this is basically

tapping on accupuncture meridians while saying

affirmative statements. YOu can find links to EFT on

the mercola.com website and I think the original

website is something like EMOfree (If you are

interested I will investigate). It is working for me

to relieve my stress and it seems to be working slowly

for Alina also.

Sharon

--- brigid sullivan wrote:

> My son Andy, now 26 was first observed to have

> autistic tendencies after heart surgery at 14

> months. The surgery got infected, he blew up like a

> balloon, and was treated with high potency

> antibiotic's for four months. He was opened up 10

> days after the surgery and left to heal from the

> inside out..at first there were every 4 hour

> dressing changes. It was awful. I can't imagine his

> pain and stress. When he came " out " of this ordeal,

> he was a different fellow...affected by autism. So I

> personally feel that trauma has some part in it, for

> Andy at least.

> Brigid

> Re: new member

>

>

> Ann

> My daughter Alina always had some stimming

> behaviors

> as an infant she would stare at her hand and then

> she

> overreacted to lots of sensory input both auditory

> and

> visual. A lot of autism research is linking this

> early behavior to the impurities in immunizations

> and

> the inability to deal with this, pesticides, junk

> food, etc. but that is not the only thing. My

> daughter started getting worse in first grade

> after

> her bout with strep and scarlet fever. That is the

> other part of the theory that people with autism

> have

> problems getting rid of virus and bacteria and it

> accumulates in the gut or brain and cause gradual

> deterioration if not addressed. We are taking the

> healthy route and trying to clean up everything in

> the

> environment first and then clean up the food to

> improve nutrition and then we clean up the body

> with

> anti candida things (not drugs) and good

> probiotics

> for the gut. Finally a detox of chemicals,etc.

> will

> be done to get rid of excess metals, etc. we have

> only been on this path for a few weeks so I will

> let

> everyone know if and when it works ( I am thinking

> positive).

> Sharon

> --- Sara Cohen wrote:

>

> > My child, now 22 loves praise and can imitate

> some

> > actions and behaviors

> > BUT, when the ASD is in ascendency he could

> freeze

> > as if he were in a

> > trance, tantrum for no observable reason,

> > perseverate with a word or phrase

> > or a particular mechanical action, stim with an

> > object or a body part, or

> > sit listening to one 3 second interval of tape.

> >

> > Asperger is the high end of the ASD . Most

> people

> > with ASPERGER'S are very

> > high functioning.

> >

> >

> >

> > >

> > > Hi! I am new to the group and I have a

> daughter,

> > , who is 8 and has

> > > Down syndrome. She has not yet been diagnosed

> with

> > ASD but most people

> > > working with her thinks she has Asperger

> syndrome.

> > I would love to talk to

> > > someone who has a child with this dual

> diagnosis

> > to compare notes. It's hard

> > > to tell which of her behaviours are due to the

> > Down syndrome and which are

> > > ASD. What confuses me is that she likes to be

> > praised and she can imitate, 2

> > > things I never associated with ASD. I also

> have an

> > older son, 17 who loves

> > > to bits. I look forward to sharing with

> you.

> > Ann

> > >

> > > [Non-text portions of this message have been

> > removed]

> > >

> > >

> > >

> >

> >

> >

> > --

> > Sara - Life is a journey- we choose the path.

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

__________________________________________________________

> Luggage? GPS? Comic books?

> Check out fitting gifts for grads at Yahoo! Search

>

>

http://search.yahoo.com/search?fr=oni_on_mail & p=graduation+gifts & cs=bz

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Need a vacation? Get great deals

to amazing places on Yahoo! Travel.

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[Guest guest]

In a message dated 10/9/2007 3:19:28 P.M. Eastern Daylight Time,

grace2ubooboo@... writes:

Hi my name is , I am a Home Educator of 5 children,

Hi ,

I am also but homeschooling 4! My youngest, age 4, Birgitta, has a

triple diagnosis of DS, autism and fetal alcohol syndrome. Her birth mother

drank and did drugs while pregnant. We knew about the DS when we adopted her

and suspected the fetal alcohol syndrome based on the birth nurses

observations (and the fact that the mother was wasted while giving birth) Her

geneticist diagnosed her immediately with the FAS and this past year she

received the

autism diagnosis.

I can totally relate to the " getting tired " you mentioned.

This is a lovely group of very smart folks who have helped me get some

answers to many of my issues. I am still working on the sleep problem (a BIG

issue) and we finally did resort to medication. Unfortunately we have not had

good results. We are now deciding whether to up the does or just wean her off

and try something else.

Welcome to the group.

Blessings, W

homeschooling Mom to AJ (12), (9), ^l^, (5,

Trisomy 18 mosaic AKA 's syndrome) and Birgitta (age 4, adoption

finalized 2/1/05 !!, Trisomy 21 AKA Down's Syndrome, Fetal Alcohol Syndrome,

Autism, SID)

************************************** See what's new at http://www.aol.com

[Guest guest]

Welcome ,

We feel your pain! We all tend to come here for support and encouragement

because the group can so closely relate to all our life issus. My son is 8,

dual diagnosed and yes, both him and I are on meds. I would love to take us

both off, but neither of us can function without. We are just starting the

GF/CF diet, he has been on soy since birth. It is working okay so far. I am

just starting to wean myself from working at all. Right now, I am only working

tues, wed, and ocasionally on another day. I am hoping it helps with my home

life. I have a wonderful husband and a 10 year old daughter but every day is

still a struggle. I could sleep for days if anyone would let me! ha!

I hope you find the answers you need. There are lots of great minds here and

years of experience.

Welcome again!

Holly

New member

Hi my name is , I am a Home Educator of 5 children, child #4 is 11 yrs

old and has Down Syndrome and it has been suggested that he has autism, but he

has not been officially diagnosed. I home school so he is with his siblings most

of the time We also participate in a home school Pe/Swimming, a home school

CO-OP one day a week and Boy Scouts.

It is hard work for me! and does not always work for him. I have learned to

take what I can as positives for him and leave the rest. My son has Celiac

Disease and Kidney damage which requires him to be on a gf /f diet-low Na and K

diet as well.

I find I am getting tired. I'm looking for answers to help me, help him--seems

medication is the only suggestion I seem to get. But I know that is not the

answer I am looking for. ( or I would just get some for myself!)

I am looking into the ICAN program, weighted blanket, samonas listening

program-- He is entering puberty---so things are intensifying.

thanks,

Tucker's mom

L. Ingalls

For by grace you have been saved through faith; and that not of yourselves, it

is the gift of God; not as a result of works, so that no one may boast. Eph.

2:8-9

---------------------------------

Yahoo! oneSearch: Finally, mobile search that gives answers, not web links.

[Guest guest]

I give you kudos for homeschooling at all, let alone 5 children. I tried

but found that it was too exhausting with only 2 and not even with my son

with Ds/ASD.

I also found the years from 10-about 18 to be the most difficult of all. We

tried meds but didn't find that they worked except to put uneeded weight on

him. Also, with kidney issues, I would be leery of many of the meds as to

the proper metabolism of medications.

Behavior management with school and home following the same plan seemed to

work the best. But the constant need to keep structure the same and follow

the same plan all the time is exhaiusting at best and impossible for one

person at worst.

My suggestion would be to try to find someone to analyse his behavior and

help you create a behavior plan with structure and positive rewards -

whether at home or if you decide to enroll him in a school setting.

>

> Hi my name is , I am a Home Educator of 5 children, child #4 is 11

> yrs old and has Down Syndrome and it has been suggested that he has autism,

> but he has not been officially diagnosed. I home school so he is with his

> siblings most of the time We also participate in a home school Pe/Swimming,

> a home school CO-OP one day a week and Boy Scouts.

> It is hard work for me! and does not always work for him. I have learned

> to take what I can as positives for him and leave the rest. My son has

> Celiac Disease and Kidney damage which requires him to be on a gf /f

> diet-low Na and K diet as well.

> I find I am getting tired. I'm looking for answers to help me, help

> him--seems medication is the only suggestion I seem to get. But I know that

> is not the answer I am looking for. ( or I would just get some for myself!)

> I am looking into the ICAN program, weighted blanket, samonas listening

> program-- He is entering puberty---so things are intensifying.

>

> thanks,

>

>

> Tucker's mom

>

> L. Ingalls

>

> For by grace you have been saved through faith; and that not of

> yourselves, it is the gift of God; not as a result of works, so that no one

> may boast. Eph. 2:8-9

>

>

>

> ---------------------------------

> Yahoo! oneSearch: Finally, mobile search that gives answers, not web

> links.

>

>

[Guest guest]

Hi , I'm Sherry mom to (dtr) 18 with Ds/Aut and crohn's.

We also homeschool and there is a tiny little list we've begun for

homeschooling kids with dual diagnosis hs-ds-asd if

you are interested. We also are GF/CF...we did SCD for 4 years but

are just now reintroducing some old gf foods like rice and potatoes.

We've homeschooled since the beginning...unfortunately doesn't

have a brood of siblings. I can tell you for us...11 was a horrid

year; she got her period that year and all you know what broke loose.

I know the gals at ICAN....we did NACD for 9 years before ICAN began

and the program really helped alot. We also did AIT and alot of

sensory stuff. I think everything helps...no magic bullet but

gradually plugging away at interventions (ABA...Verbal Behavior...at

home has been the best educational method for us) gradually putting

together all the puzzle pieces.

Welcome to the group

Sherry in Florida

>

> Hi my name is , I am a Home Educator of 5 children, child #4

is 11 yrs old and has Down Syndrome and it has been suggested that he

has autism, but he has not been officially diagnosed. I home school

so he is with his siblings most of the time We also participate in

a home school Pe/Swimming, a home school CO-OP one day a week and Boy

Scouts.

> It is hard work for me! and does not always work for him. I have

learned to take what I can as positives for him and leave the rest.

My son has Celiac Disease and Kidney damage which requires him to be

on a gf /f diet-low Na and K diet as well.

> I find I am getting tired. I'm looking for answers to help me,

help him--seems medication is the only suggestion I seem to get. But

I know that is not the answer I am looking for. ( or I would just get

some for myself!)

> I am looking into the ICAN program, weighted blanket, samonas

listening program-- He is entering puberty---so things are

intensifying.

>

> thanks,

>

>

> Tucker's mom

>

>

> L. Ingalls

>

> For by grace you have been saved through faith; and that not of

yourselves, it is the gift of God; not as a result of works, so that

no one may boast. Eph. 2:8-9

>

>

>

>

> ---------------------------------

> Yahoo! oneSearch: Finally, mobile search that gives answers, not

web links.

>

>

[Guest guest]

Sherry,

How did NACD work for you? Is it overwhelming? ( I'm homeshcooling 5!) With

Tucker's diet, potty schedule and 2 other children who have their own learning

issues I'm nervous about the ICAN program, but desperate all at the same time!

What am I getting into?

I am using the teachtown program for autism with Tucker, and he likes it! It

is done similiar to the Rosetta Stone language program. Except for developmental

age of 2-7. I would like to join the homeschooling group also, do I just send an

e-mail in?

The diet issue is really a pain, and I have a degree in nutrition!! But it is

what it is and we all eat healthier because of it! Even my teens. No junk at

our house! It is mostly an inconvenience.

Thank you for your warm welcome

, Tucker's Mom

gldcst2 wrote:

Hi , I'm Sherry mom to (dtr) 18 with Ds/Aut and crohn's.

We also homeschool and there is a tiny little list we've begun for

homeschooling kids with dual diagnosis hs-ds-asd if

you are interested. We also are GF/CF...we did SCD for 4 years but

are just now reintroducing some old gf foods like rice and potatoes.

We've homeschooled since the beginning...unfortunately doesn't

have a brood of siblings. I can tell you for us...11 was a horrid

year; she got her period that year and all you know what broke loose.

I know the gals at ICAN....we did NACD for 9 years before ICAN began

and the program really helped alot. We also did AIT and alot of

sensory stuff. I think everything helps...no magic bullet but

gradually plugging away at interventions (ABA...Verbal Behavior...at

home has been the best educational method for us) gradually putting

together all the puzzle pieces.

Welcome to the group

Sherry in Florida

>

> Hi my name is , I am a Home Educator of 5 children, child #4

is 11 yrs old and has Down Syndrome and it has been suggested that he

has autism, but he has not been officially diagnosed. I home school

so he is with his siblings most of the time We also participate in

a home school Pe/Swimming, a home school CO-OP one day a week and Boy

Scouts.

> It is hard work for me! and does not always work for him. I have

learned to take what I can as positives for him and leave the rest.

My son has Celiac Disease and Kidney damage which requires him to be

on a gf /f diet-low Na and K diet as well.

> I find I am getting tired. I'm looking for answers to help me,

help him--seems medication is the only suggestion I seem to get. But

I know that is not the answer I am looking for. ( or I would just get

some for myself!)

> I am looking into the ICAN program, weighted blanket, samonas

listening program-- He is entering puberty---so things are

intensifying.

>

> thanks,

>

>

> Tucker's mom

>

>

> L. Ingalls

>

> For by grace you have been saved through faith; and that not of

yourselves, it is the gift of God; not as a result of works, so that

no one may boast. Eph. 2:8-9

>

>

>

>

> ---------------------------------

> Yahoo! oneSearch: Finally, mobile search that gives answers, not

web links.

>

>

[Guest guest]

Hi ,

The NACD program worked well for us for between ages 2 and 10.

I was not an experienced homeschooler when we had so I really

felt I needed some guidance particularly with all her issues and they

are very pro-homeschooling. Bob Doman helped greatly in establishing

priorities for us, helping us sort out what were medical issues,

sensory issues, cognitive issues, allergies, etc. etc. and kind of

directing us us twoard the next step. It's only as overwhelming as

you want it to be. They used to just ask us how much time we thought

we could afford to spend each day (5 days a week) and then they would

write up a program accordingly.

I know there are two offshoots of NACD...ICAN and CANDO I think? and

one is run by kane and the other by kay Ness. Or perhaps you

are going to the branch with Cyndi Ringoen? I know and kay

pretty well as they were instructors who taught us the programs after

we saw Bob.What I did not like from NACD was their discouragement of

using sign language which I very much regret, and their insistence

that ABA would not work (which it did...wonderfully).

If you want to join the homeschool list which is only 30 members and

very little mail but good response when you pose a question...right

now talking about gf for celiac just send an email to hs-ds-asd-

subscribe I will look up the two teaching methods

you mentioned as i am not familiar with them.

I'm sorry but glad to hear that even a nutritionist can have a heck

of a time with all this. I feel like I need a spreadsheet (actually I

have one) for 's diet and I need the brain of a rocket scientist

(which I don't have). Don't even make me think about trying this with

FIVE kids. Yikes.

Nice to have you here.

Sherry mom to jamie 18 DS-Aut Crohn's

>

> Sherry,

>

> How did NACD work for you? Is it overwhelming? ( I'm

homeshcooling 5!) With Tucker's diet, potty schedule and 2 other

children who have their own learning issues I'm nervous about the

ICAN program, but desperate all at the same time! What am I getting

into?

> I am using the teachtown program for autism with Tucker, and he

likes it! It is done similiar to the Rosetta Stone language program.

Except for developmental age of 2-7. I would like to join the

homeschooling group also, do I just send an e-mail in?

>

> The diet issue is really a pain, and I have a degree in

nutrition!! But it is what it is and we all eat healthier because of

it! Even my teens. No junk at our house! It is mostly an

inconvenience.

>

> Thank you for your warm welcome

> , Tucker's Mom

>

>