Re: Apraxia question from India

[Guest guest]

LOL sooooo If I come down to visit you -- you'll pay for ALL 10 tickets for

Disney??

heheehehhe

I knew what you meant, I'm just being silly

bek

In a message dated 4/4/2009 1:28:05 P.M. Eastern Daylight Time,

kiddietalk@... writes:

Hey just wanted to say that it's free to meet with me at Disney just in case

someone thought I was part of that 2 thousand dollars! I LOVE having a

reason to go to Disney with my boys ;-) and have met quite a few of you there

and

we always have fun! (and I do manage to get lots of kids on rides their

parents thought they'd never get on -super fun!)

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

less. (http://food.aol.com/frugal-feasts?ncid=emlcntusfood00000001)

[Guest guest]

Tara I just spoke to Renai this morning about this. If you are going to spend

six thousand, five hundred dollars to see this woman I (and Renai) have never

heard of -please give Renai a call and see about taking your child to see Dr.

Renai Jonas for an evaluation/second opinion before you (possibly -I'll just say

that to be nice) waste thousands more of your dollars.

I've been running this group for over a decade and live in Florida and Therapee

has never come up here before and I don't know anyone that knows this

occupational therapist.

On the other hand...Renai is not just my " friend " she is Dr. Renai Jonas (Ed.D.,

CCC/SLP) a consultant with the Palm Beach Country Schools- Early Intervention

-and works with FAU. She is very respected and I chose her to go with me when

CHERAB presented to SSA in Washington about verbal disabilities/apraxia. I have

her contact info below -but first I want to share what she said:

About this occupational therapist putting her finger in your child's mouth and

determining at 3 months old from doing so at this free consult that your child

would have sensory and speech issues " well it is possible she was feeling for

low tone " But she also said that there is no way to diagnose speech and sensory

issues in a 3 month old that she knows of. Question from me -this occupational

therapist makes that much money an hour and she has to go nursery to nursery to

give " free " consults to 3 month olds?

About the therapy -Dr. Renai Jonas said there is developmental stages in the

brain -that's true. But the rest is theory as again most children with apraxia

and other issues never had any of this woman's therapy or testing or treatment

and statistically most are mainstreamed in school and in life -good students

-check the archvies. Am I misunderstanding you? If not, I'm furious that this

woman is predicting that your not even 3 year old -2 year 8 month old child will

do horrible in school if you don't pay her thousands of dollars to fix him with

her 3-4 hour a day 3 week $$ 6 thousand 5 hundred dollar " intensive " program!

And you know what for her to get parents to pay over 6 thousand dollars for 3

weeks of 3-4 hours a day of therapy....in this economy?....and with some of the

unethical people out there- I'm shocked there's not more OTs sticking fingers

into more 3 month old's mouths predicting speech and sensory issues down the

road...goodness knows in a high percentage of time they'd be right! And I'm

shocked there's not a Therapee shop next to every Starbucks across the US!

In Renai's opinion based on what I read to her -your child does not sound

apraxic -she said perhaps a phonological disorder? Hey you have nothing to lose

(but close to ten thousand dollars)

Just think -for that amount of money you can take your child to Florida and see

Renai who accepts your insurance and a bit more of the money to take your child

to the Keys to swim with the dolphins vacation therapy instead and still have

enough money left over to do that like 10 more times instead?

http://islanddolphincare.org/interns.html (I've heard the most about this one)

http://www.gulfarium.com/jfdolphin.html

http://www.dolphinscove.com/dolphin-links.htm

http://www.tamarabowman.com/dolphinassisted.pdf

http://www.joshuasdolphintherapy.org.uk/dolphinhuman1.htm

Call Renai...her contact info is below -and if you want her cell number email me

at lisa@... and I'll get that to you too.

Tara Renai is one of the best SLPs I've ever worked with...and she's working on

something right now for all apraxic children that will make her everyone's hero!

She rocks!!!!

(Renai's office in Boca is very close to City Florida)

Jonas Therapy Associates

130 Pine Circle

Boca Raton, FL 33432

561 361 0307

Fax: 561 393 6903

Contact: Renai Jonas

Dr. Renai Jonas

=====

[Guest guest]

Please, please take 's advice before giving your money to some one like

that. I'd be taking my kids to Disney, visitising and taking my daughter to

Dolphin Therapy which is only $2500.

>

> Tara I just spoke to Renai this morning about this. If you are going to spend

six thousand, five hundred dollars to see this woman I (and Renai) have never

heard of -please give Renai a call and see about taking your child to see Dr.

Renai Jonas for an evaluation/second opinion before you (possibly -I'll just say

that to be nice) waste thousands more of your dollars.

>

[Guest guest]

Hey just wanted to say that it's free to meet with me at Disney just in case

someone thought I was part of that 2 thousand dollars! I LOVE having a reason

to go to Disney with my boys ;-) and have met quite a few of you there and we

always have fun! (and I do manage to get lots of kids on rides their parents

thought they'd never get on -super fun!)

=====

[Guest guest]

can you do me a favor and go to google and put in Harper Ot. There

will be more info on her and maybe you can pass it along to your friend so when

I call her she knows what I am reading. Thanks so much.

-------------- Original message from " kiddietalk " <kiddietalk@...>:

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

Tara I just spoke to Renai this morning about this. If you are going to spend

six thousand, five hundred dollars to see this woman I (and Renai) have never

heard of -please give Renai a call and see about taking your child to see Dr.

Renai Jonas for an evaluation/second opinion before you (possibly -I'll just say

that to be nice) waste thousands more of your dollars.

I've been running this group for over a decade and live in Florida and Therapee

has never come up here before and I don't know anyone that knows this

occupational therapist.

On the other hand...Renai is not just my " friend " she is Dr. Renai Jonas (Ed.D.,

CCC/SLP) a consultant with the Palm Beach Country Schools- Early Intervention

-and works with FAU. She is very respected and I chose her to go with me when

CHERAB presented to SSA in Washington about verbal disabilities/apraxia. I have

her contact info below -but first I want to share what she said:

About this occupational therapist putting her finger in your child's mouth and

determining at 3 months old from doing so at this free consult that your child

would have sensory and speech issues " well it is possible she was feeling for

low tone " But she also said that there is no way to diagnose speech and sensory

issues in a 3 month old that she knows of. Question from me -this occupational

therapist makes that much money an hour and she has to go nursery to nursery to

give " free " consults to 3 month olds?

About the therapy -Dr. Renai Jonas said there is developmental stages in the

brain -that's true. But the rest is theory as again most children with apraxia

and other issues never had any of this woman's therapy or testing or treatment

and statistically most are mainstreamed in school and in life -good students

-check the archvies. Am I misunderstanding you? If not, I'm furious that this

woman is predicting that your not even 3 year old -2 year 8 month old child will

do horrible in school if you don't pay her thousands of dollars to fix him with

her 3-4 hour a day 3 week $$ 6 thousand 5 hundred dollar " intensive " program!

And you know what for her to get parents to pay over 6 thousand dollars for 3

weeks of 3-4 hours a day of therapy....in this economy?....and with some of the

unethical people out there- I'm shocked there's not more OTs sticking fingers

into more 3 month old's mouths predicting speech and sensory issues down the

road...goodness knows in a high percentage of time they'd be right! And I'm

shocked there's not a Therapee shop next to every Starbucks across the US!

In Renai's opinion based on what I read to her -your child does not sound

apraxic -she said perhaps a phonological disorder? Hey you have nothing to lose

(but close to ten thousand dollars)

Just think -for that amount of money you can take your child to Florida and see

Renai who accepts your insurance and a bit more of the money to take your child

to the Keys to swim with the dolphins vacation therapy instead and still have

enough money left over to do that like 10 more times instead?

http://islanddolphincare.org/interns.html (I've heard the most about this one)

http://www.gulfarium.com/jfdolphin.html

http://www.dolphinscove.com/dolphin-links.htm

http://www.tamarabowman.com/dolphinassisted.pdf

http://www.joshuasdolphintherapy.org.uk/dolphinhuman1.htm

Call Renai...her contact info is below -and if you want her cell number email me

at lisa@... and I'll get that to you too.

Tara Renai is one of the best SLPs I've ever worked with...and she's working on

something right now for all apraxic children that will make her everyone's hero!

She rocks!!!!

(Renai's office in Boca is very close to City Florida)

Jonas Therapy Associates

130 Pine Circle

Boca Raton, FL 33432

561 361 0307

Fax: 561 393 6903

Contact: Renai Jonas

Dr. Renai Jonas

=====

[Guest guest]

Believe me I am not just jumping into this. If it was say 2000.00 I would not

think about it I'd just do it. I know 6500.00 is a great deal of money but when

I listen to the parents who have done it I get such hope. She is very very

convincing. Also , you said maybe my daughter is not apraxic but she see's 3

different therapy groups hera in Ga nad she saw 2 different in Fl. and all s/t

agree she has apraxia. I guess I'll know for sure soon enough I just sent a dvd

of my daughter to Kaufman to review.I am going to get the name of her

method as well. Maybe that will shed some light on her theory.

-------------- Original message from " Maureen " <mosense@...>:

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

Please, please take 's advice before giving your money to some one like

that. I'd be taking my kids to Disney, visitising and taking my daughter to

Dolphin Therapy which is only $2500.

>

> Tara I just spoke to Renai this morning about this. If you are going to spend

six thousand, five hundred dollars to see this woman I (and Renai) have never

heard of -please give Renai a call and see about taking your child to see Dr.

Renai Jonas for an evaluation/second opinion before you (possibly -I'll just say

that to be nice) waste thousands more of your dollars.

>

[Guest guest]

this comes up a lot here.and..maybe its slightly different in other states...but

here in NY you cannot get any kind of services from a school district or a

speech therapist with a diagnosis of Apraxia from a Pediatric Neurologist or a

Developmental Pediatrician. An SLP may give an opinion..but since its a

Neurological Condition---it has to be diagnosed by a doctor!!

Do you have a diagnosis? with that- you can get services from the school

district, see private therapists which would be covered by insurance and try

that route before you give your money to someone who is just after your money.

Of course they're convincing--so is the vaccuum salesman who come to your door

and so are the girl scouts who want to sell you cookies in the mall! I can tell

you which one I'd give my money to and I do not need a new vaccuum now--but

cookies are always good to have around. Good lord- your daughter is not even 3

yet? you have plenty of time for alternative therapies!!

>

> maybe my daughter is not apraxic but she see's 3 different therapy groups hera

in Ga nad she saw 2 different in Fl. and all s/t agree she has apraxia. I guess

I'll know for sure soon enough I just sent a dvd of my daughter to Kaufman

to review.

[Guest guest]

Tara I googled her and she's an occupational therapist. Every therapist I know

has testimonials -even some that aren't good. The most bizarre? ABA therapist

Bott-Graham (google her name)

I know quite a few OTs that specialize in sensory issues as years ago Tanner

went to a few of them and they were all very good -I loved them all. Some were

covered by my insurance and some were through school. I only once paid out of

pocket as they didn't take insurance and it was a couple of hundred. I recall

at the time I thought that was expensive for an OT evaluation and didn't

continue with them.

Again neither of us heard of this person and her office is one (?) town away

from Dr. Jonas'. So what does that tell me -the lady you're going to see is an

occupational therapist. In my opinion she's not as big of a deal as you think

she is and in my opinion she's very overpriced and she makes (again in my

opinion) statements about little ones that sound more to me like a psychic (a

meanie psychic) than an occupational therapist. So far other than you nobody

else in this group heard of her -or has anyone seen her? I mean if I'm wrong

about this lady let me know. (do we insert cricket sounds here?)

If you just want to take your child to a workshop -why not Kaufman's?

That's one that I know both parents and professionals would recommend and you'd

be working with an expert in apraxia.

=====

[Guest guest]

>

> this comes up a lot here.and..maybe its slightly different in other

states...but here in NY you cannot get any kind of services from a school

district or a speech therapist WITHOUT a diagnosis of Apraxia from a Pediatric

Neurologist or a Developmental Pediatrician. An SLP may give an opinion..but

since its a Neurological Condition---it has to be diagnosed by a doctor!!

>

>

[Guest guest]

Wow. She got a 20-year sentence,but I did not see what she actually did to kill

the child?

Do you know?

>

Every therapist I know has testimonials -even some that aren't good. The most

bizarre? ABA therapist Bott-Graham (google her name)

[Guest guest]

All 4 of the neuros I see basically asked me what my daughter was diagnosed with

and I told them hypotonia and apraxia. They all agreed as well as the dev. ped.

The s/t are the ones who diagnosed her. As far as Ga and Florida they are

nothing like New York. I know because I'm from Long Island (we left 6 years ago)

New York has many more services to offer children with disabilities. In Florida

I fought hard for every service we received and in Ga there is nothing to fight

for. They just don't have the resources in my county . (South Forsyth) When I

called the Ga Council on Disabilities to complain he told me you get what you

pay for (taxes being much lower here than New York) and he told me our state has

nothing to help the disabled or elderly. He then said he was moving back to New

York. (Wish I could do the same) As far as insurance we cobra @ almost 1400.00

per month and they do not cover most of my daughters services. Up until January

we were paying 600.00 per week not including her 3 days of preschool and My Gym

classes. My insurance has now said they will pay for 25 s/t sessions at 80%. We

go to s/t 5xs a week so that has already been used up. We were fortunate enough

to recently receive a form of medicaid for based on her disabilities. In

Ga its called the Bekett Deeming Waiver and you have to show your child in

the worse light. We paid our Dev. Ped a 1025.00 and his office filled out the

paperwork and got it for us. Of course his office does not take medicaid like

most of the Kaufman/prompt therapists. Fortunately my o/t and p/t takes it so

that should help up out a little. I do realize my daughter is not yet 3 but I do

believe the earlier and more aggressive the better.I am also A type A

personality. I guess I also believe in the window although I have been told

even by the therapist in Florida that all children can be helped.

-------------- Original message from " Maureen " <mosense@...>:

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

this comes up a lot here.and..maybe its slightly different in other states...but

here in NY you cannot get any kind of services from a school district or a

speech therapist with a diagnosis of Apraxia from a Pediatric Neurologist or a

Developmental Pediatrician. An SLP may give an opinion..but since its a

Neurological Condition---it has to be diagnosed by a doctor!!

Do you have a diagnosis? with that- you can get services from the school

district, see private therapists which would be covered by insurance and try

that route before you give your money to someone who is just after your money.

Of course they're convincing--so is the vaccuum salesman who come to your door

and so are the girl scouts who want to sell you cookies in the mall! I can tell

you which one I'd give my money to and I do not need a new vaccuum now--but

cookies are always good to have around. Good lord- your daughter is not even 3

yet? you have plenty of time for alternative therapies!!

>

> maybe my daughter is not apraxic but she see's 3 different therapy groups hera

in Ga nad she saw 2 different in Fl. and all s/t agree she has apraxia. I guess

I'll know for sure soon enough I just sent a dvd of my daughter to Kaufman

to review.

[Guest guest]

I did just overnight last week a DVD of s speech therapy in hopes of

getting into 's summer program. I know she was away and won't be able to

watch it until this week. I'm hoping is a candidate for her intensives

and I'm hoping she has availibiltiy. When I sent my DVD she only had 3 slots

left. Crossing my fingers.

-------------- Original message from " kiddietalk " <kiddietalk@...>:

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

Tara I googled her and she's an occupational therapist. Every therapist I know

has testimonials -even some that aren't good. The most bizarre? ABA therapist

Bott-Graham (google her name)

I know quite a few OTs that specialize in sensory issues as years ago Tanner

went to a few of them and they were all very good -I loved them all. Some were

covered by my insurance and some were through school. I only once paid out of

pocket as they didn't take insurance and it was a couple of hundred. I recall at

the time I thought that was expensive for an OT evaluation and didn't continue

with them.

Again neither of us heard of this person and her office is one (?) town away

from Dr. Jonas'. So what does that tell me -the lady you're going to see is an

occupational therapist. In my opinion she's not as big of a deal as you think

she is and in my opinion she's very overpriced and she makes (again in my

opinion) statements about little ones that sound more to me like a psychic (a

meanie psychic) than an occupational therapist. So far other than you nobody

else in this group heard of her -or has anyone seen her? I mean if I'm wrong

about this lady let me know. (do we insert cricket sounds here?)

If you just want to take your child to a workshop -why not Kaufman's?

That's one that I know both parents and professionals would recommend and you'd

be working with an expert in apraxia.

=====

[Guest guest]

Tara

I think Harper is very similar to a therapist ( Buck) here in

Colorado that we are considering. Her website is www.annashouseLLC.com

she specializes in intensive neuro-developmental therapy (and she is a Listening

Fitness instructor). I have talked to parents who claim miracles have happened

with her therapy. I commend you on your advocacy for your daughter! I think

everyone here is just looking out for you because some people do ca$h in on 'the

hope' of desperate parents! On the other hand, I do believe that neurologically,

our kids have deep rooted issues that need to be

addressed! I have been taking my son to one of the " top " STs in Denver who

treats Apraxia yet she can't tell me much about Apraxia except what I hear

everywhere " unknown neurological condition " I've always wanted more of an

answer! I hope you get in on the Kauffman intensive! 

in Colorado

 

From: taranowakowski@... <taranowakowski@...>

Subject: Re: [ ] Re: Apraxia question from India

Date: Saturday, April 4, 2009, 7:09 PM

I did just overnight last week a DVD of s speech therapy in hopes of

getting into 's summer program. I know she was away and won't be able to

watch it until this week. I'm hoping is a candidate for her intensives

and I'm hoping she has availibiltiy. When I sent my DVD she only had 3 slots

left. Crossing my fingers.

-

[Guest guest]

works for me!!! :-)

I was just singing that song two nights ago to Arielle. I can't believe

she's never heard it!!!

I've failed her as a mother, indeed!

bek

In a message dated 4/5/2009 10:47:23 A.M. Eastern Daylight Time,

kiddietalk@... writes:

How about I take all 10 of you out on our boat instead? :-)

M I C (see you real soon)

K E Y (why? because I love you!)

M O U S E!

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

less. (http://food.aol.com/frugal-feasts?ncid=emlcntusfood00000001)

[Guest guest]

Here is a link for Ga Speech-Language Hearing Asssoc. They also just had

their National Conference 4/2! Theres lots of info for advocates and

maybe this will help some of the parents down there. The link I found

on Apraxia-kids.org in links for Events.

http://web.memberclicks.com/mc/page.do?sitePageId=77187 & orgId=gsa

<http://web.memberclicks.com/mc/page.do?sitePageId=77187 & orgId=gsa>

>

> Ga and Florida they are nothing like New York. Ga there is nothing to

fight for. They just don't have the resources in my county . (South

Forsyth) When I called the Ga Council on Disabilities to complain he

told me you get what you pay for (taxes being much lower here than New

York) and he told me our state has nothing to help the disabled or

elderly.

[Guest guest]

How about I take all 10 of you out on our boat instead? :-)

M I C (see you real soon)

K E Y (why? because I love you!)

M O U S E!

=====

[Guest guest]

I just googled her and found her website but I am a bit confused...I don't see

anywhere on the website (unless i missed it) what she is offering that costs

6500!!!!! They're not offering the summer camp so it can't be that so what

exactly are you paying for then if you don't mind my asking?

Lori

>

> can you do me a favor and go to google and put in Harper Ot. There

will be more info on her and maybe you can pass it along to your friend so when

I call her she knows what I am reading. Thanks so much.

> -------------- Original message from " kiddietalk " <kiddietalk@...>:

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

>

> Tara I just spoke to Renai this morning about this. If you are going to spend

six thousand, five hundred dollars to see this woman I (and Renai) have never

heard of -please give Renai a call and see about taking your child to see Dr.

Renai Jonas for an evaluation/second opinion before you (possibly -I'll just say

that to be nice) waste thousands more of your dollars.

>

> I've been running this group for over a decade and live in Florida and

Therapee has never come up here before and I don't know anyone that knows this

occupational therapist.

>

> On the other hand...Renai is not just my " friend " she is Dr. Renai Jonas

(Ed.D., CCC/SLP) a consultant with the Palm Beach Country Schools- Early

Intervention -and works with FAU. She is very respected and I chose her to go

with me when CHERAB presented to SSA in Washington about verbal

disabilities/apraxia. I have her contact info below -but first I want to share

what she said:

>

> About this occupational therapist putting her finger in your child's mouth and

determining at 3 months old from doing so at this free consult that your child

would have sensory and speech issues " well it is possible she was feeling for

low tone " But she also said that there is no way to diagnose speech and sensory

issues in a 3 month old that she knows of. Question from me -this occupational

therapist makes that much money an hour and she has to go nursery to nursery to

give " free " consults to 3 month olds?

>

> About the therapy -Dr. Renai Jonas said there is developmental stages in the

brain -that's true. But the rest is theory as again most children with apraxia

and other issues never had any of this woman's therapy or testing or treatment

and statistically most are mainstreamed in school and in life -good students

-check the archvies. Am I misunderstanding you? If not, I'm furious that this

woman is predicting that your not even 3 year old -2 year 8 month old child will

do horrible in school if you don't pay her thousands of dollars to fix him with

her 3-4 hour a day 3 week $$ 6 thousand 5 hundred dollar " intensive " program!

>

> And you know what for her to get parents to pay over 6 thousand dollars for 3

weeks of 3-4 hours a day of therapy....in this economy?....and with some of the

unethical people out there- I'm shocked there's not more OTs sticking fingers

into more 3 month old's mouths predicting speech and sensory issues down the

road...goodness knows in a high percentage of time they'd be right! And I'm

shocked there's not a Therapee shop next to every Starbucks across the US!

>

> In Renai's opinion based on what I read to her -your child does not sound

apraxic -she said perhaps a phonological disorder? Hey you have nothing to lose

(but close to ten thousand dollars)

> Just think -for that amount of money you can take your child to Florida and

see Renai who accepts your insurance and a bit more of the money to take your

child to the Keys to swim with the dolphins vacation therapy instead and still

have enough money left over to do that like 10 more times instead?

> http://islanddolphincare.org/interns.html (I've heard the most about this one)

> http://www.gulfarium.com/jfdolphin.html

> http://www.dolphinscove.com/dolphin-links.htm

> http://www.tamarabowman.com/dolphinassisted.pdf

> http://www.joshuasdolphintherapy.org.uk/dolphinhuman1.htm

>

> Call Renai...her contact info is below -and if you want her cell number email

me at lisa@... and I'll get that to you too.

>

> Tara Renai is one of the best SLPs I've ever worked with...and she's working

on something right now for all apraxic children that will make her everyone's

hero! She rocks!!!!

>

> (Renai's office in Boca is very close to City Florida)

>

> Jonas Therapy Associates

> 130 Pine Circle

> Boca Raton, FL 33432

> 561 361 0307

> Fax: 561 393 6903

> Contact: Renai Jonas

> Dr. Renai Jonas

>

> =====

>

[Guest guest]

My problem isn't so much the therapy -I have a huge issue with anyone

-especially a therapist who is not a neurologist -making neurological long term

negative predictions for an infant or toddler based on a theory.. no less that

her theory needs close to ten thousand dollars for a few weeks of her

" intensive " therapy.

My oldest son Dakota as some of you know was a traumatic forceps delivery which

caused extensive injuries and damage to his head, face, neck. Dakota had head

injuries, torn neck muscles, crushed facial nerves, eating and even breathing

problems...sometimes he would just stop breathing -during the day! Trust me

-most of you don't even want to know what the words intensive therapy really

mean -it doesn't mean a few weeks 3-4 hours a day -it means intensive! Dakota

was in intensive care from birth and in therapy with an occupational therapist

overseen by a neurologist from 3 weeks old. Once home from intensive care from

birth, Dakota needed constant therapy at home and I had to get him to therapy

and doctor appointments almost daily as well. I used to try to never let Dakota

see me cry...but strangers used to look at him and cry. His head was to one

side and his face looked like " someone beat the crap out of him " as my sister

put it. He couldn't breath without sounding like he was moaning in pain with

each breath...which perhaps it was that.

At 2 years old after 2 years of non stop intensive therapy and after not being

able to leave Dakota alone for even a second (trust me -not one second!) in fear

he'd stop breathing and Glenn or I wouldn't be there as I trusted almost nobody

or anything else...I was sitting in Dr. Trevor DeSouza's office with Glenn and

he closed the door and told me and Glenn that Dakota was just evaluated to have

a 6 month delay which as many of you know is significant for a 2 year old. He

said very softly " nobody can tell you for sure at this point if that delay will

be permanent or not " Genius runs in my mom's side of the family (I've been

tested there too when young) and I knew that Dakota wasn't where he should be.

The thing is that Dr. DeSouza gave me hope. Because " nobody can tell you for

sure at this point if that delay will be permanent or not "

I have a huge problem to be honest with you with any professional, but

especially one that isn't a neurologist, that will make blanket negative

statements about an infants and toddlers neurological ability. The brain is

still not fully understood -and in infants and children even more so. Add to

this the whole sticking her finger into Tara's 3 month old child's mouth for her

" prognosis " of speech and sensory issues down the road!

Dakota's prognosis was very poor. I knew that he was at risk for mental

retardation- for being in a wheelchair the rest of his life -for having part of

his limbs stop growing. His injuries were severe and life threatening. But not

ONE neurologist said to me " Dakota will have ___ when he gets older due to ____ "

And I didn't get one opinion. In fact, second opinions were never good enough

for me and Glenn either. Dakota was probably seen by just about all the top

neurologists in the NY and NJ area when an infant and child. I knew the

prognosis -but I also knew there is always hope. And again...not one

neurologist gave me a fortune teller prognosis of Dakota's future based on

" fixing " his brain.

The point isn't that therapy and early intervention can't change prognosis and

odds because yes they do. We all know they do -the research is there -the proof

is there. The point is that the way to get " there " isn't just one way. It's

not just one theory or one therapy. There are many therapies that have created

miracles for infants and children around the globe. There are therapists all

over who have created miracles for children around the globe. In apraxia as

with any condition -there are those professionals who have risen to the top

because they created a method perhaps that is proven to be effective for the

majority. Even then...that method won't necessarily be the most effective for

all. There are a tremendous amount of proven and unproven theories...there are

many therapies mostly effective but some not so much...there are even more

therapists -both good and bad.

The point is how DARE an occupational therapist make blanket negative

neurological statements about any infant or child based on her training and

theories? An occupational therapist is not a neurologist and I know some of you

have stated that you have no use for neurologists...but it was neurologists who

saved my son. It was a neurologist - specifically Dr. Trevor De Souza -who gave

me hope for my son Dakota when there was little out there for him. Dakota at

that point did not " blend " and he clearly had both hard and soft sign

damage...but he overcame it all. It was Dr. Trevor DeSouza who taught me and

Glenn about brain stimulation and multisensory therapies...and he didn't charge

me thousands of dollars to do so either!

So if any of you wonder why I have no use for an occupational therapist who is

going to tell Tara -mother of a 2 year 8 month old who is already talking and

" blending " that if she doesn't fix this child's brain with her 6 thousand 5

hundred dollar program then the child is going to have problems in school

later...then you'll know why. And if you don't get it -you just won't get it.

Yes this subject is one that will always be an open wound for me -and that type

of professional is one that I will never allow around either of my children -or

for that matter my mom or mother in law as they get older.

Here's Dr. Trevor DeSouza's link

http://www.pedneuro.com/physicians.shtml

(and Dakota's OT that I LOVED from there was Servello (sp?)

PS Update to Dakota again is he is an honor's student in HS -14 YO

(plays football, basketball, and is now selling his games on Ebay!)

=====

[Guest guest]

Sounds like you should have sued the doctor for the forceps injury and not

having c-section instead, and then you could foot the bill for all of us to see

the $6500 therapist!!! (Or go to Disney World?)

So sorry to hear about the traumatic delivery. :0(

For me, I have a problem paying anyone any amount of $$$ out of pocket. But it

would be naiive of me to assume that anyone or everyone else cannot afford

xyz$$$ at the drop of a hat.

If this is her life savings, then let's help her by referring her to sources and

or books that she can proactively realize neurological things and ways to cope

on her own. On the other hand, if it is not her life savings, then let it go and

let her spend her money how she chooses or sees fit.

I am assuming since the original poster made mention of $6500. to begin

with,then there was a reason. She was either wanting feedback of whether or not

anyone else had spent this much ever, or she was throwing the number out there

to see if anyone thougt the amount was outrageous.

Sorry, I cannot remember who the original poster was at the moment, but wat I

really think those who disagree with you doing tis are trying to tell you is

that $6500. to anyone, even a neurologist, is way too much out-of-pocket money.

Secondly, if this person is so great at diagnosing and treating (which she might

be), then why doesn't she have the educational credentials to back her as well.

Someone who charges that much to each client for a weeks service can obviously

pay to go to med school or any other educational ssem in order to get sufficient

credentials to back her.

Now, I have to admit that a week in Disney World, Universal Studios, MGM, or the

like, will definitely provide a lot of neurological stimulation to your child

and you wilmre than likely see a significant change upon your return. And, you

can doit on 1/3 of the money you would be spending at this other's persons

office. In addition, the memories your chid will walk away with are tremendous.

Which would " I " chose (and please note that I do agree that this other person

might provide you with more " information " you won't readily get from anywhere

else, even a neurologist)? Disney, MGM, Universal, and Dolphin Cove for the

" memorable " vacation of a lifetime! Remember what I said in another posting? IT

IS THE EXPERIENCE AND NOT JUST THE REPETITION. " Experience " creates change in

the brain.

Put yourself in your child's shoes....then tell us all, which would " YOU " rather

do? Then you will have your answer.

Just trying to help you sort through the mess because we tend NOT to think

clearly when we want so desperately to help our child.

I would bet that the information this woman is prepared to tell you about your

child is information you can obtain on your own. If she did, then why can't you?

I think this is what the group is trying to get across to you.

Whatever your decision, I wish you and your child the best.

>

> My problem isn't so much the therapy -I have a huge issue with anyone

-especially a therapist who is not a neurologist -making neurological long term

negative predictions for an infant or toddler based on a theory.. no less that

her theory needs close to ten thousand dollars for a few weeks of her

" intensive " therapy.

>

> My oldest son Dakota as some of you know was a traumatic forceps delivery

which caused extensive injuries and damage to his head, face, neck. Dakota had

head injuries, torn neck muscles, crushed facial nerves, eating and even

breathing problems...sometimes he would just stop breathing -during the day!

Trust me -most of you don't even want to know what the words intensive therapy

really mean -it doesn't mean a few weeks 3-4 hours a day -it means intensive!

Dakota was in intensive care from birth and in therapy with an occupational

therapist overseen by a neurologist from 3 weeks old. Once home from intensive

care from birth, Dakota needed constant therapy at home and I had to get him to

therapy and doctor appointments almost daily as well. I used to try to never

let Dakota see me cry...but strangers used to look at him and cry. His head was

to one side and his face looked like " someone beat the crap out of him " as my

sister put it. He couldn't breath without sounding like he was moaning in pain

with each breath...which perhaps it was that.

>

> At 2 years old after 2 years of non stop intensive therapy and after not being

able to leave Dakota alone for even a second (trust me -not one second!) in fear

he'd stop breathing and Glenn or I wouldn't be there as I trusted almost nobody

or anything else...I was sitting in Dr. Trevor DeSouza's office with Glenn and

he closed the door and told me and Glenn that Dakota was just evaluated to have

a 6 month delay which as many of you know is significant for a 2 year old. He

said very softly " nobody can tell you for sure at this point if that delay will

be permanent or not " Genius runs in my mom's side of the family (I've been

tested there too when young) and I knew that Dakota wasn't where he should be.

The thing is that Dr. DeSouza gave me hope. Because " nobody can tell you for

sure at this point if that delay will be permanent or not "

>

> I have a huge problem to be honest with you with any professional, but

especially one that isn't a neurologist, that will make blanket negative

statements about an infants and toddlers neurological ability. The brain is

still not fully understood -and in infants and children even more so. Add to

this the whole sticking her finger into Tara's 3 month old child's mouth for her

" prognosis " of speech and sensory issues down the road!

>

> Dakota's prognosis was very poor. I knew that he was at risk for mental

retardation- for being in a wheelchair the rest of his life -for having part of

his limbs stop growing. His injuries were severe and life threatening. But not

ONE neurologist said to me " Dakota will have ___ when he gets older due to ____ "

And I didn't get one opinion. In fact, second opinions were never good enough

for me and Glenn either. Dakota was probably seen by just about all the top

neurologists in the NY and NJ area when an infant and child. I knew the

prognosis -but I also knew there is always hope. And again...not one

neurologist gave me a fortune teller prognosis of Dakota's future based on

" fixing " his brain.

>

> The point isn't that therapy and early intervention can't change prognosis and

odds because yes they do. We all know they do -the research is there -the proof

is there. The point is that the way to get " there " isn't just one way. It's

not just one theory or one therapy. There are many therapies that have created

miracles for infants and children around the globe. There are therapists all

over who have created miracles for children around the globe. In apraxia as

with any condition -there are those professionals who have risen to the top

because they created a method perhaps that is proven to be effective for the

majority. Even then...that method won't necessarily be the most effective for

all. There are a tremendous amount of proven and unproven theories...there are

many therapies mostly effective but some not so much...there are even more

therapists -both good and bad.

>

> The point is how DARE an occupational therapist make blanket negative

neurological statements about any infant or child based on her training and

theories? An occupational therapist is not a neurologist and I know some of you

have stated that you have no use for neurologists...but it was neurologists who

saved my son. It was a neurologist - specifically Dr. Trevor De Souza -who gave

me hope for my son Dakota when there was little out there for him. Dakota at

that point did not " blend " and he clearly had both hard and soft sign

damage...but he overcame it all. It was Dr. Trevor DeSouza who taught me and

Glenn about brain stimulation and multisensory therapies...and he didn't charge

me thousands of dollars to do so either!

>

> So if any of you wonder why I have no use for an occupational therapist who is

going to tell Tara -mother of a 2 year 8 month old who is already talking and

" blending " that if she doesn't fix this child's brain with her 6 thousand 5

hundred dollar program then the child is going to have problems in school

later...then you'll know why. And if you don't get it -you just won't get it.

>

> Yes this subject is one that will always be an open wound for me -and that

type of professional is one that I will never allow around either of my children

-or for that matter my mom or mother in law as they get older.

>

> Here's Dr. Trevor DeSouza's link

> http://www.pedneuro.com/physicians.shtml

>

> (and Dakota's OT that I LOVED from there was Servello (sp?)

>

> PS Update to Dakota again is he is an honor's student in HS -14 YO

> (plays football, basketball, and is now selling his games on Ebay!)

>

> =====

>

[Guest guest]

My brother is a partner in a maritime law firm, I was surrounded by attorneys

including a friend of my husband's who typically worked representing the

hospitals in cases like mine that wanted me to sue. Please don't read the rest

if you have a weak stomach.

I had a very solid case too as there were two attempts at high forceps which is

what crushed Dakota's face, three attempts at vacuum, and one attempt to

manually turn him as he was stuck crowning for 50 minutes. I was starting to

have issues too and don't recall everything but apparently there was another

doctor who was just about to push him back up to do an emergency C section when

(picture someone leaning back like they are pulling at a door that won't open

-they pulled Dakota out. That' the short version of the nightmare. Thing is

the doctor that delivered Dakota was just out of medical school (I was probably

her worst nightmare) and she was one of the nicest people I met at that

hospital. I know that she didn't mean to be incompetent -she just was new. My

doctor was on vacation and I had up to a certain point a normal healthy

pregnancy...and it's a long story but in it toward the end this doctor that

actually did what she did was the light to me at the time. I mean a year or so

later there was an episode of ER which mimicked my delivery so closely many of

us couldn't watch it without tears. In that episode however the mother died and

of course I didn't die -but I know that both Dakota and I came close. I do

believe I know what it feels like to be given that choice -and I do now believe

that it's beautiful to die -but I believe (and maybe because I was delirious and

passed out at the time) that I chose to stay...because I knew that Dakota

needed me. And about suing. I know this sounds weird but I didn't want to

focus on the negative energy of a lawsuit. I didn't want to focus on what was

wrong with Dakota. I wanted to focus and visualize Dakota as healing and better

-and that there to be no reason to sue. I had ten years to sue anyway...and all

I prayed for every day is that Dakota would be OK. Every single day -not

kidding. So yes in the early days I could have sued...but we all make choices

every day -and you know what- I'm just happy that my happy ending is that there

is no reason to sue anymore!

Is that why we now live near the happiest place on Earth? Probably!!!

=====

[Guest guest]

We did not have as traumatic of a delivery, but forecpt and vacuum were part of

it.   I won't go into elaborate details, but we chose not to pursue a lawsuit

either primarily because I did not want to focus all my energy on a law suit.  

I was not sure she woud have a normal life span, and I just did not feel i could

tolerate myself if I had spent her childhood fighting and then lose her.

 

That being said, i did go to the one obstetrician in the practive of 7 who never

saw me and explained that I was instructed by my specilaist to not have a

vaginal delivery due to another condition, yet they over ruled him.  I  was also

supposed to have been sent to a perinatologist, given my family history of

having a sibling with ds.   The obstetrician refused to release me to the

specialist. 

 

I have read quite a bit on medical malpractice and they say that people don[t

sue doctors that they like.  I really liked this one doctor and since he was not

involved in the care, I told him exactly what I thought and felt and that more

money was never going to change the outcome in her life.   I have also heard

that the people who should sue the doctor and have a good case, rarely do.   I

did not want to be bitter and I never wanted to regret having her, and I never

ever have . I don't think I would feel the same way if I had to testify over and

over again about the burden of having a special needs child.

 

This is our story, and our decision.   Thank goodness my hubby and i totally

agreed on this.

 

 

sharon

 

 

From: kiddietalk <kiddietalk@...>

Subject: [ ] Re: Apraxia question from India

Date: Sunday, April 5, 2009, 5:38 PM

My brother is a partner in a maritime law firm, I was surrounded by attorneys

including a friend of my husband's who typically worked representing the

hospitals in cases like mine that wanted me to sue. Please don't read the rest

if you have a weak stomach.

I had a very solid case too as there were two attempts at high forceps which is

what crushed Dakota's face, three attempts at vacuum, and one attempt to

manually turn him as he was stuck crowning for 50 minutes. I was starting to

have issues too and don't recall everything but apparently there was another

doctor who was just about to push him back up to do an emergency C section when

(picture someone leaning back like they are pulling at a door that won't open

-they pulled Dakota out. That' the short version of the nightmare. Thing is the

doctor that delivered Dakota was just out of medical school (I was probably her

worst nightmare) and she was one of the nicest people I met at that hospital. I

know that she didn't mean to be incompetent -she just was new. My doctor was on

vacation and I had up to a certain point a normal healthy pregnancy... and it's

a long story but in it toward the end this doctor that actually did what she did

was the light to me at

the time. I mean a year or so later there was an episode of ER which mimicked

my delivery so closely many of us couldn't watch it without tears. In that

episode however the mother died and of course I didn't die -but I know that both

Dakota and I came close. I do believe I know what it feels like to be given that

choice -and I do now believe that it's beautiful to die -but I believe (and

maybe because I was delirious and passed out at the time) that I chose to

stay...because I knew that Dakota needed me. And about suing. I know this sounds

weird but I didn't want to focus on the negative energy of a lawsuit. I didn't

want to focus on what was wrong with Dakota. I wanted to focus and visualize

Dakota as healing and better -and that there to be no reason to sue. I had ten

years to sue anyway...and all I prayed for every day is that Dakota would be OK.

Every single day -not kidding. So yes in the early days I could have sued...but

we all make choices every

day -and you know what- I'm just happy that my happy ending is that there is no

reason to sue anymore!

Is that why we now live near the happiest place on Earth? Probably!!!

=====

[Guest guest]

Sharon,

About the DS thing and them refusing to refer you to a specialist, that law has

recently been changed. :0)It is called the prenatally and postnatally diagnosed

act. One act I personally fought for. Now, I am fighting for the quantitative

testing to prevent misdiagnosis.

About fighting in childhood, I completely understand. We have not filed suit

against the midwife and unfortunately, we have been in a fight since his birth

for various reasons. (First, to get him home. Second, for a correct diagosis.

Third, which has been the longest and current fight, to get appropriate services

for him. I cannot give up on this fight, as it affects the quality of life he

will have without any language. (Hence, why I am looking for outside sources to

help me, such as tutoring, that I know are available...it is just finding the

right source.) We finally got a lawyer to fight for the services that have been

a struggle to get, even when he was enrolled in public school. That took years

of persistence, as not many will do it Pro Bono and not many are that qualified

or brave enough to fight government authority. Most people would have walked

away orgiven in to " their " needs, but Iam just not willing to cmpromise his

health anymore. (Which btw, I got three doctors letters now :0))) and two are

VERY specific like we discussed. They still are challenging us and it might end

up in court...really sad.)

>

> We did not have as traumatic of a delivery, but forecpt and vacuum were part

of it. I won't go into elaborate details, but we chose not to pursue a lawsuit

either primarily because I did not want to focus all my energy on a law suit.

I was not sure she woud have a normal life span, and I just did not feel i could

tolerate myself if I had spent her childhood fighting and then lose her.

>

> That being said, i did go to the one obstetrician in the practive of 7 who

never saw me and explained that I was instructed by my specilaist to not have a

vaginal delivery due to another condition, yet they over ruled him. I was also

supposed to have been sent to a perinatologist, given my family history of

having a sibling with ds. The obstetrician refused to release me to the

specialist.

>

> I have read quite a bit on medical malpractice and they say that people don[t

sue doctors that they like. I really liked this one doctor and since he was not

involved in the care, I told him exactly what I thought and felt and that more

money was never going to change the outcome in her life. I have also heard

that the people who should sue the doctor and have a good case, rarely do. I

did not want to be bitter and I never wanted to regret having her, and I never

ever have . I don't think I would feel the same way if I had to testify over and

over again about the burden of having a special needs child.

>

> This is our story, and our decision. Thank goodness my hubby and i totally

agreed on this.

>

>

> sharon

[Guest guest]

Funny..my daughter also can say the s sound. It is so interesting how this

whole apraxia thing works so differently in each child. Sure makes it hard to

deal with!

mom to , Luke, Kurt and

>

> That's interesting because " s " is one of the sounds my daughter can say which

surprised all of her therapists but then she always has to be different. lol

>

> That just shows how different each of our children are and how we can listen

to the information from others but still

> need to keep an open mind and remember that our children might not do the same

as others and vice versa.

>

> Carol

> Trishasmom

> She isn't typical, She's Trisha!

>

> From: Maureen

> Sent: Thursday, April 02, 2009 5:53 PM

>

> Subject: [ ] Re: Apraxia question from India

>

>

> the slp has said that is one of THE last sounds to come with APraxia

children.

>

[Guest guest]

My little gal does well with s and f but can't come up with t or d yet which are

supposedly easier...go figure

>

>

>

> I can agree with this.  Lindsey was going on 9 before she learned the S and F

sound, Those 2 were the hardest for her. Now its the CH and R sound and she's

going on 13.

>

>

>

> Jennie

>

>

> Re: [ ] Re: Apraxia question from India

>

>

>

>

>

>

> Speaking about the /S/ sound. You're right in that " typically " speaking,

> the /S/ sound is not one that Apraxic kids will say.

> But don't give up on her just yet with this sound-- she might just one day

> surprise you!!!

>

> Asa just up and one day started using /S/ out of the blue!! Even the SLPs

> were all shocked beyond belief. He's been in speech therapy for almost 2 yrs

> now, and the /S/ was something I was warned upfront to not expect for a

verrrrry

> loooong time. And yet-- he says it now all the time-- perfectly so!

> I don't quite get it-- but I'm not questioning it at ALL. LOL

> But Asa's a definite Severe Apraxic and was dx by 3 different SLPs , so none

> of us thought he'd be able to do it for the longest time until it just

> happened. One of the gals even said that it wasn't the sound they were working

on

> that day and he just said it at the end of the word, and she decided to just

> go with it.

>

> I'm very thankful tho-- because it's a toughie to get, and I'm thankful for

> ONE less battle for this little fighter of mine.

>

> bek

>

>

> In a message dated 4/2/2009 6:42:22 P.M. Eastern Daylight Time,

> mosense @ writes:

>

> I can also attest to the sounds my daughter will not try yet-- and I know

> she has heard them 7000 times if you want a specific number. She will not try

> any sound that starts with " S " . nope, nada ,not gunna happen. the slp has said

> that is one of THE last sounds to come with APraxia children.

>

> **************Feeling the pinch at the grocery store? Make dinner for $10 or

> less. ( http ://food. aol .com/frugal-feasts? ncid =emlcntusfood00000001 )

>

>

[Guest guest]

+

That might be a good idea. Maybe using the Kaufman cards at a slower speed

might be the ticket. Any idea where I can get the cards? I have just seen them

for 159.00. Was hoping to find them at a cheaper price somewhere.

Jane

www.KidsHealthNaturally.com

www.HealthyChatter.com

>

> Kaufmann and NDT ABSOLUTELY CAN be used together!!! ABSOLUTELY!!!

> there's no reason why they couldn't be combined therapies.