Re: why so mad at non-verbal stats?

[Guest guest]

ok.  My daughter has autism and I just read your words and I do not understand

your point.  I do believe if they do not talk by a certain age they will never

talk.  Sorry if that bothers you but from all the research, DAN! dr and other

families that I know personally whose children are adults now and not talking I

know this to be true.  If you child is just apraxic why are you so worried

about what the stats say about autism?  My daughter was non-verbal at the age

of 3 years more so than most she did not even look people in the eye she didn't

babble or anything and she was diagnosed with speech apraxia which I now

disagree with.  I got her to talk.  Seriously I had her in with 3 speech

teachers that I liked 4 times a week and I was doing a b12 shot.  When I

increased the shot she spoke her first sentence not words.  She has exploded

ever since and is reading now.  Her teachers all thought she was a miracle and

wanted to know what we were

doing.  There is a window of opportunity when the child's brain is still

developing and if you catch it early enough you can help them speak.  If it is

too late then there is no therapy or medicine that can help.  We do not really

know what age this is.  I think it is different for each child.  I have heard

it used to be 5 but now some believe some children as late as 8 can make

progress I do not know any past the age of 5 locally  that have spoken ever

again though.  Is your child older?  I am just wondering why you are so upset

with these opinions. 

CAthy

From: kiddietalk <kiddietalk@...>

Subject: [ ] Any thoughts on this???

Date: Saturday, May 29, 2010, 1:52 PM

 

The NIH recently held a conference on autism

http://www.nidcd.nih.gov/funding/programs/10autism/detail.htm

There are a few facts (translate -fact = what we know today not tomorrow) that

you may want to read...but I want opinions on this fact here under What are the

characteristics and predictors of the school-aged children who move from

nonverbal to verbal?

A retrospective review of the literature on cases and studies of individuals who

began speaking at age 5 or older (Pickett et al., 2009) highlighted the

following factors:

" Age (most children who started speaking were between 5 and 7)—none over age

13 "

I hate quotes like this!! How can they say ZERO autistic kids who didn't speak

by the age of 13 have NEVER spoken? What about those that are misdiagnosed?

What about those that never got appropriate therapies? What about

Ketchum who just started to speak at TWENTY FIVE YEARS OLD???

http://littlemermaidmelanie.wordpress.com/

OK granted you might say " but , you yourself say that is

misdiagnosed as autistic, so she wouldn't count " But was diagnosed ALL

HER LIFE up till adulthood by numerous medical, speech, and educational

professionals as autistic, and not just in one state -but in various

states...and some of those that diagnosed her were and I believe still are

considered to be " experts " on autism. So answer that!

Clearly if Mel's parents didn't continue to dig for more answers as to why no

progress, her daughter today would still be considered a " non verbal autistic "

adult and clearly she would have remained nonverbal... and not upset that one

stat.

It's funny -we have more parents of almost teen and teen children diagnosed with

autism on nutriiveda then young- or perhaps those are the parents that fill out

the survey. But nutriiveda alone proves that stat 100% wrong as you can read

here and on the testimony page at PursuitofResearch.org.

But am I the only one that is not sleeping to notice that autism used to have

almost NOTHING to do with expressive speech??? More about not wanting to talk,

or not being able to understand what is said rather than not being ABLE to talk.

Autism a half a century ago was more of a psychological diagnosis, perhaps

language was affected, but not ability to speak. How dare anyone say that a

child diagnosed today with autism that doesn't talk by 13 years old...when did

they start counting the years because clearly it wasn't from 50 years ago! I

mean it would be one thing if this conference was held at the Boonstown Autism

Support group in a backroom of Dennys on Main Steet in Doohicky USA and stated

by a local 6th grade teacher based on what he has seen in his own experience of

13 year old children with autism in his own class...but...? I don't buy it as

fact or even possible...Not even for today!

=====

[Guest guest]

" You wrote:

" There is a window of opportunity when the child's brain is still developing and

if you catch it early enough you can help them speak. If it is too late then

there is no therapy or medicine that can help. "

That " fact " has already been outdated. Recent research has found that the brain

stays malleable throughout life- here's info from just one of the studies

" We tend to think of the brain as being static, or even beginning to degenerate,

once we reach adulthood,' says Dr Heidi Johansen-Berg of the Department of

Clinical Neurology, University of Oxford, who led the work. `In fact we find the

structure of the brain is ripe for change. We've shown that it is possible for

the brain to condition its own wiring system to operate more efficiently.'

http://www.sciencedaily.com/releases/2009/10/091016114055.htm

And who knows what research 10 years from now finds? Facts today can be laughed

at 50 years from now.

I am angry because I know the work of Dr. Rosenthal and it has been

proven numerous times. If you don't know his work as a parent of a child with

any special need I suggest you study it- because it works both ways. Some of it

is based in self-fulfilling prophesy and research shows that group expectations

are the strongest predictor of the future. A self-fulfilling prophecy explains

how negative or positive thoughts create reality.

And because I happen to have found professionals that are knowledgeable about

conditions other than autism and my son wasn't diagnosed as autistic means I

shouldn't be upset? Clearly Tanner could have been diagnosed as autistic as he

had little eye contact, sensory issues, no facial expression and was nonverbal.

One who wasn't aware of apraxia may have misdiagnosed him too. His lack of eye

contact was from frustration- as some lash out and some withdraw. Once he was

provided with alternative ways of communication he was engaged because he wanted

desperately to be able to communicate.

We have parents like Jeanne who has one child with apraxia and one with autism

and she chooses to do outreach to apraxia because there is so little awareness.

I have been told by two professionals who are experts in autism in two different

states that 40 to 50 percent of the children diagnosed as autistic today are

misdiagnosed - many children are misdiagnosed in our group alone. I pointed out

in my previous email that Mel was misdiagnosed as autistic until adulthood by

various professionals from various states. So if a child is thought to be

autistic and nonverbal until 13 years old there is no chance they'll talk? We

shouldn't assume that perhaps there was a misdiagnosis? Where would Mel be if

her parents followed that advice and just gave up? To me no age is too late

-Mel proved that at 25 years old! http://littlemermaidmelanie.wordpress.com

The NIH workshop facts didn't say " low probability " of a nonverbal autistic

child becoming verbal after 13 years old - they said " none " . And why the age of

13 and not 11 or 12? Is it because they found a child or two that did become

verbal prior to 13? And if they became aware of one at 14 then they raise the

age to 14? How does that work? Why close the door to zero? To not provide

false hope? Yet it's OK to provide zero hope to a 13 year old ever being verbal

if still nonverbal at 13?

There is no right and wrong -there will be those like me trying to prove there

is ALWAYS hope. I do speak to parents all the time who have given up hope. It

amazes me because what some here may not know is that my first born son was

given little chance by any doctor of being normal due to traumatic injuries to

his head and neck during birth. His prognosis was that he was at high risk of

mental retardation, impaired growth (they constantly measured his limbs),

wheelchair, eating and breathing problems...and I NEVER gave up hope. Don't get

me wrong -the love I have always had for Dakota would be there no matter what-

but the way I loved him was to provide him the benefit of the doubt. NOBODY is

going to tell me that there is zero hope.

Guess who drove me to BJs and Target today? My now straight A super funny,

coordinated, brilliant " miracle child " who is now 15 years old. Dakota. Many

doctors and therapists over the years have told me that Dakota was very

fortunate to have me as his mom, but I believe the best words of wisdom I

learned was from an OT named who worked out of neurologist Dr. Trevor

DeSouza's office as Dakota was in therapy from birth and for years. She told me

" statistically the children like Dakota that have the best prognosis are those

that have parents that are compulsive " So call me compulsive.

And I went through this with two kids. My youngest Tanner is my apraxic son.

When Tanner was tested for kindergarten the school told me that he " wouldn't

make it in a mainstream kindergarten class " due to his testing. Did I say

" thank you someone needed to be honest with me so that I can accept this and

move on? " Are you kidding?!!!! I said " OH! And what exactly is it that you

THINK my SON is NOT ABLE TO DO for kindergarten class?!! SIT ON THE FLOOR AND

LISTEN TO STORIES? FINGER PAINT? And if we don't give him the chance to start

kindergarten in the mainstream at what point do you propose that we throw my son

into the mainstream? First grade which is even harder? Second? Third which is

hardest of all?!! " And back then I didn't realize that the ONLY reason he

tested so low was because they were incompetent and the testing was a violation

of my son's Civil Rights! They judged his ability on his disability. In fact

given the chance because you KNOW my son was put into a mainstream kindergarten

class because I was just as angry as I was by the statement that you wonder

about and he's been pretty much a straight A student -and will be going in to

8th grade next year. He can do math better than me -and know more about Greek

mythology than I do!

Tanner is a child where more than one professional had told me " I really didn't

know if he ever was going to____ " Others gave up on him -I NEVER did, and he

shocked me as well as some of the professionals because he went beyond even

where I thought he'd ever go. He took what I taught him and ran with it.

But did Tanner's story change anything? No. Those who don't believe look at

Tanner and say to me " But , Tanner is different than my son/daughter. My

son/daughter is SO much more severe? "

My advice in addition to studying the work of Dr. Rosenthal is to read

the book Think and Grow Rich which follows the same principal as The Secret as

well as Dr. Rosenthal's research. There is a great story in Napoleon Hill's

book where he speaks about how he never accepted that his son born without ears

would be a deaf mute -and how he would use his same principals for success to

help his son overcome is physical affliction. Here's a clip from a forward from

the book " This book should be adopted by all high schools and no boy or girl

should be permitted to graduate without having satisfactorily passed an

examination on it. This philosophy will not take the place of the subjects

taught in schools, but it will enable one to organize and apply the knowledge

acquired, and convert it into useful service and adequate compensation without

waste of time. Dr. R. , Dean of the College of The City of New York,

after having read the book, said, " The very best example of the soundness of

this philosophy is your own son, Blair, whose dramatic story you have outlined

in the chapter on Desire. " Dr. had reference to the author's son, who,

born without normal hearing capacity, not only avoided becoming a deaf mute, but

actually converted his handicap into a priceless asset by applying the

philosophy here described. After reading the story (starting on page 52), you

will realize that you are about to come into possession of a philosophy which

can be transmuted into material wealth, or serve as readily to bring you peace

of mind, understanding, spiritual harmony, and in some instances, as in the case

of the author's son, it can. help you master physical affliction. "

So while you can ask me why the quote upsets me, perhaps I study too much and

perhaps because I grew up in a family of PhDs and know to question, question,

question...like question you and ask how can it not upset you? But that I won't

ask because I know I'm not like you -that's clear. We all have the right to

parent, love, believe what we want. I believe in my children and the miracle of

the human body and mind.

" Until the great mass of the people shall be filled with the sense of

responsibility for each other's welfare, social justice can never be attained. "

~Helen Keller

=====

[Guest guest]

I'm with on this one.

The " hard boiled egg " theory that there is a window of opportunity that closes

at age " 5 " (plug in any number) has been disproven many, many times. brain

studies have shown that the brain remains plastic throughout a lifetime. that

is one reason why some stroke patients are able to recover full function.

children can and do start speaking after age 5 or 8 or 13... just post an

inquiry on any autism or apraxia board and you will get stories of

children/adults who have.

" experts " who go around saying that children after the age of X will not speak

are lowering the expectations of many parents and professionals who work with

those children. No one should give up hope or have low expectations of any

child.

just my 2 cents

>

> From: kiddietalk <kiddietalk@...>

> Subject: [ ] Any thoughts on this???

>

> Date: Saturday, May 29, 2010, 1:52 PM

>

>

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> The NIH recently held a conference on autism

http://www.nidcd.nih.gov/funding/programs/10autism/detail.htm

>

>

>

> There are a few facts (translate -fact = what we know today not tomorrow) that

you may want to read...but I want opinions on this fact here under What are the

characteristics and predictors of the school-aged children who move from

nonverbal to verbal?

>

> A retrospective review of the literature on cases and studies of individuals

who began speaking at age 5 or older (Pickett et al., 2009) highlighted the

following factors:

>

>

>

> " Age (most children who started speaking were between 5 and 7)†" none over age

13 "

>

>

>

> I hate quotes like this!! How can they say ZERO autistic kids who didn't

speak by the age of 13 have NEVER spoken? What about those that are

misdiagnosed? What about those that never got appropriate therapies? What

about Ketchum who just started to speak at TWENTY FIVE YEARS OLD???

http://littlemermaidmelanie.wordpress.com/

>

>

>

> OK granted you might say " but , you yourself say that is

misdiagnosed as autistic, so she wouldn't count " But was diagnosed ALL

HER LIFE up till adulthood by numerous medical, speech, and educational

professionals as autistic, and not just in one state -but in various

states...and some of those that diagnosed her were and I believe still are

considered to be " experts " on autism. So answer that!

>

>

>

> Clearly if Mel's parents didn't continue to dig for more answers as to why no

progress, her daughter today would still be considered a " non verbal autistic "

adult and clearly she would have remained nonverbal... and not upset that one

stat.

>

>

>

> It's funny -we have more parents of almost teen and teen children diagnosed

with autism on nutriiveda then young- or perhaps those are the parents that fill

out the survey. But nutriiveda alone proves that stat 100% wrong as you can

read here and on the testimony page at PursuitofResearch.org.

>

>

>

> But am I the only one that is not sleeping to notice that autism used to have

almost NOTHING to do with expressive speech??? More about not wanting to talk,

or not being able to understand what is said rather than not being ABLE to talk.

Autism a half a century ago was more of a psychological diagnosis, perhaps

language was affected, but not ability to speak. How dare anyone say that a

child diagnosed today with autism that doesn't talk by 13 years old...when did

they start counting the years because clearly it wasn't from 50 years ago! I

mean it would be one thing if this conference was held at the Boonstown Autism

Support group in a backroom of Dennys on Main Steet in Doohicky USA and stated

by a local 6th grade teacher based on what he has seen in his own experience of

13 year old children with autism in his own class...but...? I don't buy it as

fact or even possible...Not even for today!

>

>

>

> =====

>

>

[Guest guest]

Each child is different, I think people get upset that anyone would assume

that at any age a child cannot learn to talk. Children progress

differently, there is no magic age or number.....just like someone waking up

after so

many years from a stroke and talking etc. no one knows no one

[Guest guest]

It's funny you answered just when was agreeing with the original point

-there is always the possibility of hope, even when the probability is low. In

's original message to me she did not understand why I was upset that the

NIH had a fact that a child " diagnosed with autism " that was nonverbal by the

age of 13 - NONE have become verbal. And as you'll read below accepted

that.

In this most recent message from she in her own way agreed with my

original point, there are exceptions -and that's great! This isn't about

positive vs negative thought and we all have to deal with reality. I can give

you just a few clear examples in life of what this is.

1. A search team that continues a bit longer than the rest to search for bodies

when the consensus is too much time has passed for anyone to found alive.

Who would you choose for your search team if you were stuck in rubble after an

earthquake? I could find you stories about this all over the net.

2. A doctor who continues a bit longer than the rest to bring back a child

who's heart just stopped.

Which doctor would you choose if it was your child who's heart just stopped?

Numerous examples here too.

3. A patient who pushes himself harder than others in spite of pain to walk

when his doctors and statistics say he will never walk again.

Are you that person? Probably a most recent example would be Bret a as

his speech and coordination were reported to be affected. And what about the

prognosis Mel's doctors, a team of doctors gave her after the myopathies ...due

to toxic levels of Depakote since she never had a seizure -she had

pneumonia..yes -doctors too make mistakes

http://littlemermaidmelanie.wordpress.com

4. A parent that doesn't give up hope that THEIR child won't be that " one child

that will never talk " as someone says below...even if a stat and a therapist and

a few random doctors think so.

Are you that parent?

It's hard work to go beyond the rest. It's not just sitting around visualizing

everything is going to be fine and " thinking positive " -are you kidding?! Do

you know that therapy for my son Dakota.... -was grueling...all day long, even

through the night he had to be watched as he was high risk for sudden infant

death and I didn't trust any monitor so we slept with Dakota between me and

Glenn and quite a few times we had to save him in the night from himself! and

during a time when I had to go through surgery due to his delivery as well and

was not myself in shape to help others people would say...But I knew what had to

be done for Dakota and I fought for him! In addition to constant therapy at

home, times he would just stop breathing, trouble eating, frequent vomiting,

almost daily trips to various doctors, therapists, and yes -while he slept those

were the moments I prayed and prayed he would be fine. AND TWO YEARS LATER

BEING TOLD BY NEUROLOGIST DR TREVOR DESOUZA THAT DAKOTA HAD A 6 MONTH DELAY AND

NOBODY COULD TELL US THAT IT WOULD BE PERMANENT OR NOT. But in addition to the

bad news Dr. DeSouza also gave me a gleam of hope -he told me to expose Dakota

to everything possible =brain stimulation. And don't even ask what we did from

there. It was constant work, it was never giving up. We didn't go on vacation,

or for trips to get pedicures, or out to dinner and the movies =Dakota was our

world-to help him and give him that chance.

It's not just sitting on your hands praying or hoping, it's going that extra

mile instead of giving up just because someone...ANYONE...tells you it's too

late. it's become much clearer to me now why doctors and therapists used to say

Dakota overcome because of the work I did -I had no idea other parents would

give up so easily....and for me it wasn't just one child -it was two. And child

two, Tanner, my " normal healthy baby " who I find out is apraxic and everything

that comes with that after EVERYONE tells me he is fine...just the opposite...I

could have taken 's approach and hey...everyone says he's fine...listen to

others and DO NOTHING....but I didn't -and I wasn't happy with the information I

found. So I gave up sleep because clearly I still had to be there for Dakota

-and scoured the internet neurology websites searching for any clues...not happy

with the sites I found I started my own, co authored a book, continue to run

this grouplist even though BOTH of my boys today, 13 and 15 soon to be 14 and 16

are mainstreamed and doing beyond my dreams better. Why? Because I know that

there is nothing out there still -nobody picked up the " late talker " cause and

has run with it enough for me to pass the baton to them. And today if your

child is a late talker with sensory issues he or she will either be diagnosed as

autistic or perhaps be given the horrible diagnosis name of " childhood apraxia

of speech " We need awareness and advocacy for our children -advocacy even from

some who claim to be helping. Helping my foot as I have a 13 year old apraxic!

Our children deserve a smile and a voice I write at the bottom of every email.

They deserve awareness, advocacy, and research...to help better understand

prevention and treatment. To help others understand not every late talker with

sensory issues is autistic, and not every child with apraxia, a life long motor

planning disorder of speech, should be given a name that will be with them for

life! Apraxia currently is a condition one overcomes- is not cured of (even

though with nutriiveda...there's something going on with that there together

with the fish oil that needs to be validated!)

finally admits that while rare there are exceptions to the rule...I take

that as a good thing on your behalf . And yes we can all admit that there

may be a child that will never talk -but while each of us may give up hope on

someone else's child -they shouldn't assume that " one child that will never

talk " is their own!

Yes I've posted some fluffy stuff since like the Little Engine that Could and

have avoided answering 's mainly negative responses...but that's because

most here have so much to deal with already -most need hope - not

downers...unless it's Debbie Downer and we can laugh at her

http://www.youtube.com/watch?v=3yFSpml8oSw

And I'll say it again -there is always hope! If you want to instead watch and

listen to something that is inspirational...and still based in reality -study

the work of Helen Keller

Because of Helen all others today that are deaf and blind are taught how to be

independent, learn and work. http://www.hknc.org I know because I used to

provide work for them to do. And you know how you can let someone who is deaf

and blind know you are happy? You take their hand and put it on your face while

you are smiling.

This is a weekend here in the US of remembrance of heroes. Those who gave up

their lives for freedom. How profound and even sad to have messages of lost

hope on such a weekend.

(PS -again both original messages at bottom)

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