Apraxia is not a fancy word for speech delay

[Guest guest]

Hi Liz! Cut to Larry King transcripts:

" KING: Toni, tell me about your child, Diezel.

BRAXTON: Oh, my son Diezel is three years old now. And we found out

he was autism -- he was diagnosed, actually, last year, September, in

Vegas. We had to...

KING: What were the signs?

BRAXTON: For me, he wasn't developing like his older brother. He

wouldn't do eye contact. We took him to the doctors, the

developmental pediatricians, and they said oh, he has something

called apraxia, which is a fancy label for a speech delay.

We put him in O.T. occupational therapy and speech, everything we

needed to do. But things just weren't right. He just -- he didn't

talk. He stopped saying words. Just -- he just wasn't different than

his brother.

KING: And now?

BRAXTON: Much better. We had -- because we were able to diagnose, we

knew what the problem was and we could get him all the help that he

needs.

KING: What kind of treatment?

BRAXTON: Oh, gosh, he's in ABA, O.T. speech behavior, everything. He

has like almost 80 hours a week therapy with different therapists.

KING: I guess we know autism, , through the movie, right? "

http://transcripts.cnn.com/TRANSCRIPTS/0703/25/lkl.01.html

And I said:

> One day when some celebrity's child is diagnosed with

> apraxia and there are monies to pay for research and media story

> after story behind it -then apraxia too like ADHD will be a real

> boy...I mean disease.

Toni's story is not what I meant -and it was actually one of the producers of

Inside Edition who told me what I wrote above -and I agree/ stand by

it. Toni rose awareness about autism...and if anything her

child's " diagnosis " of apraxia was sadly dismissed by her on national

TV -so actually she just hurt our efforts if anything. It's clear

her opinion is it's all autism. (period) If her child never talks -autism. If

her child starts to

talk -therapy for autism. Note she doesn't mention speech therapy?!

google search for Toni Braxton apraxia - 528

google search for Toni Braxton autism - 42,300

And since the news she shared about apraxia was apraxia =bogus

diagnosis... she rose awareness about autism and hurt the kids

diagnosed with apraxia.

I'm talking about someone that is a huge celebrity -and has a child

diagnosed with apraxia -just apraxia, and is educated about what

apraxia is. Not being a " big enough " star does make a difference

too...

Through CHERAB we have a child star with an amazing story who grew up

with apraxia -still has it but overcomes most of it through learning

the scripts - that we tried to get booked on a few shows. She does

have a name but was apparently not " big enough " . We won't share her

name for reasons yet here -but if anyone wants to book this actress

on a show you can email me at lisa@...

=====

[Guest guest]

Thanks for the transcript. I had only heard it loosely mentioned before

and forgot the child had autism and apraxia. While I would never wish

this on anyone I will say this, if apraxia shows up in someone's life

and they are famous I hope they will use their celebrity to help their

child and our children.

, I can never thank you enough for all you have done and do and for

this board. Raising awareness is a huge thing. I have enough trouble

doing that in my own family (Liz, he'll get there in his own time. Maybe

just talks for him, etc.). For you to " take this on the road "

as they say is a huge undertaking and then to write the book that I

describe as the first place where I saw my son in other kids....let's

just say you are my hero!

I am interested in the story you mention and will enail you offlist.

kiddietalk wrote:

>Hi Liz! Cut to Larry King transcripts:

>

> " KING: Toni, tell me about your child, Diezel.

>

>BRAXTON: Oh, my son Diezel is three years old now. And we found out

>he was autism -- he was diagnosed, actually, last year, September, in

>Vegas. We had to...

>

>KING: What were the signs?

>

>BRAXTON: For me, he wasn't developing like his older brother. He

>wouldn't do eye contact. We took him to the doctors, the

>developmental pediatricians, and they said oh, he has something

>called apraxia, which is a fancy label for a speech delay.

>

>We put him in O.T. occupational therapy and speech, everything we

>needed to do. But things just weren't right. He just -- he didn't

>talk. He stopped saying words. Just -- he just wasn't different than

>his brother.

>

>KING: And now?

>

>BRAXTON: Much better. We had -- because we were able to diagnose, we

>knew what the problem was and we could get him all the help that he

>needs.

>

>KING: What kind of treatment?

>

>BRAXTON: Oh, gosh, he's in ABA, O.T. speech behavior, everything. He

>has like almost 80 hours a week therapy with different therapists.

>

>KING: I guess we know autism, , through the movie, right? "

>http://transcripts.cnn.com/TRANSCRIPTS/0703/25/lkl.01.html

>

>And I said:

>

>

>>One day when some celebrity's child is diagnosed with

>>apraxia and there are monies to pay for research and media story

>>after story behind it -then apraxia too like ADHD will be a real

>>boy...I mean disease.

>>

>>

>

>Toni's story is not what I meant -and it was actually one of the producers of

>Inside Edition who told me what I wrote above -and I agree/ stand by

>it. Toni rose awareness about autism...and if anything her

>child's " diagnosis " of apraxia was sadly dismissed by her on national

>TV -so actually she just hurt our efforts if anything. It's clear

>her opinion is it's all autism. (period) If her child never talks -autism. If

her child starts to

>talk -therapy for autism. Note she doesn't mention speech therapy?!

>

>google search for Toni Braxton apraxia - 528

>google search for Toni Braxton autism - 42,300

>

>And since the news she shared about apraxia was apraxia =bogus

>diagnosis... she rose awareness about autism and hurt the kids

>diagnosed with apraxia.

>

>I'm talking about someone that is a huge celebrity -and has a child

>diagnosed with apraxia -just apraxia, and is educated about what

>apraxia is. Not being a " big enough " star does make a difference

>too...

>

>Through CHERAB we have a child star with an amazing story who grew up

>with apraxia -still has it but overcomes most of it through learning

>the scripts - that we tried to get booked on a few shows. She does

>have a name but was apparently not " big enough " . We won't share her

>name for reasons yet here -but if anyone wants to book this actress

>on a show you can email me at lisa@...

>

>

>=====

>

[Guest guest]

Don't you think a lot of the non-verbal kids with autism are

probably actually kids who have autism AND apraxia and the apraxia

part hasn't been recognized?

I have one apraxic (non ASD) child and one ASD (non apraxic) child.

The ASD child started talking with perfect artic around the age of

1. The apraxic child didn't start talking until almost 5. I know

that you put those 2 disorders together and it gets very complicated.

As to speech therapy, I'd estimate that we've seen between the 2 kids

from early intervention on into the school system along with private

therapy, a minimum of 10 different speech therapists and I'd say that

only 1 of those was worth the time, effort and expense. Verbal

Behavior Analysis was the only therapy that was worth the expense in

terms of helping my ASD son's language development and a PROMPT

therapist was the only therapist that helped my apraxic child.

If I were Toni Braxton, I'd try to find a PROMPT therapist who is

also trained in verbal behavior or at least " behavioral therapies " .

Or better yet, I'd get him to the Carbone Clinic where the VBA

therapists use the Kauffman Cards for the kids who have co-occurring

diagnoses of apraxia and autism. She should have access to the

resources that many of us don't have.

Having said all of that, the only thing that got my apraxic child

talking was removing lead with iv calcium EDTA.

Vicki

>

> >Hi Liz! Cut to Larry King transcripts:

> >

> > " KING: Toni, tell me about your child, Diezel.

> >

> >BRAXTON: Oh, my son Diezel is three years old now. And we found

out

> >he was autism -- he was diagnosed, actually, last year, September,

in

> >Vegas. We had to...

> >

> >KING: What were the signs?

> >

> >BRAXTON: For me, he wasn't developing like his older brother. He

> >wouldn't do eye contact. We took him to the doctors, the

> >developmental pediatricians, and they said oh, he has something

> >called apraxia, which is a fancy label for a speech delay.

> >

> >We put him in O.T. occupational therapy and speech, everything we

> >needed to do. But things just weren't right. He just -- he didn't

> >talk. He stopped saying words. Just -- he just wasn't different

than

> >his brother.

> >

> >KING: And now?

> >

> >BRAXTON: Much better. We had -- because we were able to diagnose,

we

> >knew what the problem was and we could get him all the help that

he

> >needs.

> >

> >KING: What kind of treatment?

> >

> >BRAXTON: Oh, gosh, he's in ABA, O.T. speech behavior, everything.

He

> >has like almost 80 hours a week therapy with different therapists.

> >

> >KING: I guess we know autism, , through the movie, right? "

> >http://transcripts.cnn.com/TRANSCRIPTS/0703/25/lkl.01.html

> >

> >And I said:

> >

> >

> >>One day when some celebrity's child is diagnosed with

> >>apraxia and there are monies to pay for research and media story

> >>after story behind it -then apraxia too like ADHD will be a real

> >>boy...I mean disease.

> >>

> >>

> >

> >Toni's story is not what I meant -and it was actually one of the

producers of

> >Inside Edition who told me what I wrote above -and I agree/ stand

by

> >it. Toni rose awareness about autism...and if anything her

> >child's " diagnosis " of apraxia was sadly dismissed by her on

national

> >TV -so actually she just hurt our efforts if anything. It's clear

> >her opinion is it's all autism. (period) If her child never talks -

autism. If her child starts to

> >talk -therapy for autism. Note she doesn't mention speech therapy?!

[Guest guest]

What is IV Calcium EDTA and what, if anything helped your ASD kid?

Just curious, not looking for new avenues.

fridgudare2003 wrote:

>Don't you think a lot of the non-verbal kids with autism are

>probably actually kids who have autism AND apraxia and the apraxia

>part hasn't been recognized?

>

>I have one apraxic (non ASD) child and one ASD (non apraxic) child.

>The ASD child started talking with perfect artic around the age of

>1. The apraxic child didn't start talking until almost 5. I know

>that you put those 2 disorders together and it gets very complicated.

>

>As to speech therapy, I'd estimate that we've seen between the 2 kids

>from early intervention on into the school system along with private

>therapy, a minimum of 10 different speech therapists and I'd say that

>only 1 of those was worth the time, effort and expense. Verbal

>Behavior Analysis was the only therapy that was worth the expense in

>terms of helping my ASD son's language development and a PROMPT

>therapist was the only therapist that helped my apraxic child.

>

>If I were Toni Braxton, I'd try to find a PROMPT therapist who is

>also trained in verbal behavior or at least " behavioral therapies " .

>Or better yet, I'd get him to the Carbone Clinic where the VBA

>therapists use the Kauffman Cards for the kids who have co-occurring

>diagnoses of apraxia and autism. She should have access to the

>resources that many of us don't have.

>

>Having said all of that, the only thing that got my apraxic child

>talking was removing lead with iv calcium EDTA.

>

>Vicki

>

>

>

>

>>

>>

>>

>>>Hi Liz! Cut to Larry King transcripts:

>>>

>>> " KING: Toni, tell me about your child, Diezel.

>>>

>>>BRAXTON: Oh, my son Diezel is three years old now. And we found

>>>

>>>

>out

>

>

>>>he was autism -- he was diagnosed, actually, last year, September,

>>>

>>>

>in

>

>

>>>Vegas. We had to...

>>>

>>>KING: What were the signs?

>>>

>>>BRAXTON: For me, he wasn't developing like his older brother. He

>>>wouldn't do eye contact. We took him to the doctors, the

>>>developmental pediatricians, and they said oh, he has something

>>>called apraxia, which is a fancy label for a speech delay.

>>>

>>>We put him in O.T. occupational therapy and speech, everything we

>>>needed to do. But things just weren't right. He just -- he didn't

>>>talk. He stopped saying words. Just -- he just wasn't different

>>>

>>>

>than

>

>

>>>his brother.

>>>

>>>KING: And now?

>>>

>>>BRAXTON: Much better. We had -- because we were able to diagnose,

>>>

>>>

>we

>

>

>>>knew what the problem was and we could get him all the help that

>>>

>>>

>he

>

>

>>>needs.

>>>

>>>KING: What kind of treatment?

>>>

>>>BRAXTON: Oh, gosh, he's in ABA, O.T. speech behavior, everything.

>>>

>>>

>He

>

>

>>>has like almost 80 hours a week therapy with different therapists.

>>>

>>>KING: I guess we know autism, , through the movie, right? "

>>>http://transcripts.cnn.com/TRANSCRIPTS/0703/25/lkl.01.html

>>>

>>>And I said:

>>>

>>>

>>>

>>>

>>>>One day when some celebrity's child is diagnosed with

>>>>apraxia and there are monies to pay for research and media story

>>>>after story behind it -then apraxia too like ADHD will be a real

>>>>boy...I mean disease.

>>>>

>>>>

>>>>

>>>>

>>>Toni's story is not what I meant -and it was actually one of the

>>>

>>>

>producers of

>

>

>>>Inside Edition who told me what I wrote above -and I agree/ stand

>>>

>>>

>by

>

>

>>>it. Toni rose awareness about autism...and if anything her

>>>child's " diagnosis " of apraxia was sadly dismissed by her on

>>>

>>>

>national

>

>

>>>TV -so actually she just hurt our efforts if anything. It's clear

>>>her opinion is it's all autism. (period) If her child never talks -

>>>

>>>

>autism. If her child starts to

>

>

>>>talk -therapy for autism. Note she doesn't mention speech therapy?!

>>>

>>>

>

>

>

>

>

[Guest guest]

Hi Vicki!

After I posted my message I realized I didn't clarify the point you

brought up -so thanks. Yes of course there are many children as we

know from this group who have autism and apraxia -and then there are

those who have children that are just autistic or just apraxic.

(using the word " just " loosely because as we all know -apraxia and

autism are multifaceted conditions so most also do have co existing

other issues such as low tone/motor planning deficits in other areas

of the body/sensory issues/digestive issues)

Toni's child may have autism and apraxia -or perhaps the apraxia

diagnosis was a misdiagnosis and her child is solely autistic. Even

if it's a misdiagnosis -why would this mother call an apraxia

diagnosis a fancy word for speech delay? What out there points in

that direction?

Perhaps the name " childhood apraxia of speech " is not only insulting

to children with apraxia once they pass the age of 8 -but it also

reinforces the fallacy that apraxia is a normal stage of speech

children may go through. Apraxia is a motor planning condition -so

is stuttering. If one said " Childhood stuttering of speech " -what

would that mean? It would separate delay from disorder. Childhood

stuttering of speech would imply it's something a child will grow out

of -like baby eczema, childhood asthma, childhood nephrotic syndrome,

(or childhood apraxia of speech)

As a group we have to continue to advocate and point out the

ignorance and look down the road (at least 10 years) because we have

children that are diagnosed with various conditions of speech and

they will grow up in this world. We today as a group today forming

the meaning of what these conditions are and what they should be

called. When Tanner was first diagnosed with apraxia just 8 years

ago most speech therapists didn't even recognize apraxia or didn't

know what it was -and most didn't know if it should be called apraxia

or dyspraxia which were the only 2 names for it then. Our children

have their issues which make them unique and there are of course

overlaps which make them the same. In order to help our

communication impaired children as individuals 'and' as a whole -we

need awareness to fight the ignorance. Toni's comment was from

ignorance - but perhaps we can as a group come up with a nice letter

to send to Toni Braxton just in case her child also does have apraxia

to help her child? (and ours if she's ever interviewed about this

again!)

Liz do you want to start it?

And as far as iv calcium EDTA -be aware of the 'very' serious risks.

http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5508a3.htm

(just one link -there are many more -do your homework)

=====

[Guest guest]

Hi ,

Just to clarify, the form of EDTA that causes the most problems

is 'sodium'. That's why I always make a point to call the chelator

that we have used for lead removal as CALCIUM EDTA. If sodium EDTA

is given by iv over a short period of time it can deplete calcium and

cause serious problems. That's why it's important to use a doctor

who knows what he/she's doing and to verify the vial each time to

make sure that they didn't mistakenly pick up the wrong vial.

Unfortunately, many medical mistakes such as the wrong drug given

happen far too often in hospitals, etc each and every day.

A book that I like to recommend that people read is called " Turning

Lead into Gold " . I forgot who wrote it, but it was an RN who had

ASD/ADHD twins and the doctor who ultimately treated them.

This probably isn't the issue for every child but for us our doctor

was dead on when she said that she sees motor planning improve after

lead removal. We had also seen some high lead levels on Blood RBC

Minerals testing (which unfortunately isn't the " preferred " medical

test for diagnosing lead toxicity).

Where does the lead come from? You need only watch the reports of tv

of all the recent recalls of products and products that haven't been

recalled: water hoses, toys (Fisher-Price, , etc), baby bibs,

children's character lunch boxes, etc. The book that I mentioned has

a really nice section on the various heavy metals and where they can

commonly be found. You'd probably be surprised.

My child was and still is sometimes a " mouther " and " chewer " . So

what came first the lead or the apraxia? We don't know but we do

know that after the first few infusions the words started coming and

after 8 infusions she still excreting high lead in her urine post

infusion.

Vicki

>

> Hi Vicki!

>

> After I posted my message I realized I didn't clarify the point you

> brought up -so thanks. Yes of course there are many children as we

> know from this group who have autism and apraxia -and then there are

> those who have children that are just autistic or just apraxic

>

> And as far as iv calcium EDTA -be aware of the 'very' serious risks.

> http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5508a3.htm

> (just one link -there are many more -do your homework)

>

> =====

>

[Guest guest]

Liz,

I just posted to in a nutshell about Calcium EDTA. EDTA

is the approved drug for lead toxicity. You have to be careful in

that the doctors office doesn't mistakenly infuse the sodium version

which they use in adults.

As to my ASD child, we've seen glimmers of improvement here and there

but he is a toughnut. Thankfully, he started out rather high

functioning. Verbal Behavior Analysis helped his language. We've

seen some improvement with various biomedical protocols but nothing

like his sister's response to Calcium EDTA. He was an MMR screamer,

Nitrous Oxide regressor (screwed up methylation cycle and B12

deficiency), and chronic Lyme (5 years before diagnosis) child. We

also did some Calcium EDTA with him but didn't get the same response

but then he's never shown the lead in RBC Mineral testing or high

lead urine levels that she has. He also doesn't have any motor

planning difficulties, articulation or real " speech " issues. He's

been drawing and writing since age 2-3. It's language and social with

him. The only academics that he has issues with are subjects that

require lots of language like reading comprehension and expressive

writing. They are VERY different kids.

Vicki

>

> What is IV Calcium EDTA and what, if anything helped your ASD kid?

> Just curious, not looking for new avenues.

>

> >

> >Information shared here is the personal opinion of each member.

CHERAB accepts no responsibility for the opinions and information

posted on the list by its members.

> >

[Guest guest]

I guess I could add that while the genetics are similar for my

ASD child and my apraxic child and the toxic incubator was the same

(as if that wasn't enough, I breastfed each for a year), my gut tells

me that they had different triggers. We've done the genetics through

Dr Yasko and in some ways the apraxic child had more " autistic "

looking genetics in terms of sulfur metabolism than my ASD child.

Vicki

> >

> > What is IV Calcium EDTA and what, if anything helped your ASD kid?

> > Just curious, not looking for new avenues.

> >

>

>

>

>

> > >

> > >Information shared here is the personal opinion of each member.

> CHERAB accepts no responsibility for the opinions and information

> posted on the list by its members.

> > >