Re: New Magazine

[Guest guest]

Sheri we've had a bit of media coverage even prior to The Late

Talker book as you can see on the front page of CHERAB

http://www.cherab.org/

There are a two very huge things coming up. One is a feature

article in a respected medical publication within the next month or

so, and one is a Nationwide show coming up this week which I will

announce this week.

I used to announce things long before -but being that you are a

freelance writer yourself you know how it is! Sometimes release

dates change and I just want to make sure. Stefanie Lindsar the

producer from Inside Edition who is now with Fox is the first one

that really believed in helping us to get the word out to help the

children, and she still does.

There are many reasons why it's still hard to get the word out about

late talkers however even though the time is coming fast.

Most parents of late talkers as well as pediatricians don't view

a " typical " late talker at 2 as anything to worry about ( " certainly

he isn't autistic so none of this has anything to do with him! " ) and

speaking of " him " -most of the members in our group have boys -yet

as a recent NY Times article stated just the other day: " There's a

kind of a sense when you see that in a boy that he'll catch up, that

he's just a late talker, " Dr. Sices said. In fact, she added, the

opposite is true. Disorders involving serious speech problems are

twice as likely to be diagnosed in boys as girls, Dr. Sices said.

" Both boys and girls benefit greatly from early detection of language

delays, " she said.

http://www.nytimes.com/2004/02/03/health/03DISP.html?ex=1076389200 & en=a2a2f39433\

21c248 & ei=5062 & partner=GOOGLE

Once a bit older, many of our late talker children, are viewed

as autistic, or PDD even when they clearly are not showing signs of

autism. Even though there are overlaps between mostly PDD and

apraxia -the differences in diagnosis and more importantly

therapeutic treatment, as well as reasons for behaviors, are

significantly different. For example a child who can't communicate

may withdraw due to autism -or due to the frustrations late talkers

face daily from wanting desperately to communicate -but not being

able to. It's easy to learn the reason by providing alternate ways

to communicate to a late talker.

Verbal disabled children and adults have the only disability in the

world that still has as much discrimination against it as it does.

In the recent children's movie Agent Cody Banks -the joke throughout

the movie was that each time Cody Banks had trouble speaking when

around a pretty girl there was the repeated snotty line " Are you in

special ed or something?! " Real funny for all those sitting at the

movies with their own speech impaired child hearing everyone laugh

at something he does all the time.

You don't have to answer this question -but think for a minute what

your impression would be of a person who tried to ask you a

question, but each word came out slow and or hard to understand.

You may view the person as drunk, or... It's known that people view

even mild impairments of speech in a negative light.

Speaking of negative light, while the CDC and others state that 75

to 80% of autistics are MR (which probably isn't accurate due to the

testing used on verbal disabled children

http://www.cherab.org/news/verbaldisabledtest.html ) it's known that

the average apraxic child has average to above average

intelligence. Many apraxics without appropriate EI and advocacy however are

schooled as LD, TMR or MR classes based on parent reports.

Apraxic children are not only fully aware of what

they want to say and their lack of ability to say it -they are aware

of when others talk in front of them saying unkind things (or laugh

at them, or treat them poorly)

We've been lucky with our son Tanner so far, but I joke that when

Tanner is older if he believes his speech ability hold him back -I'll buy

hearing aids for him he can use when he wants. I know that sounds

horrible -but even from when he was a late talker toddler -I quickly

learned by signing to Tanner while rude people asked right in front of

him " What's wrong with him? " that they would say " oh " and then act

differently -kind being the first word that comes to mind. There is

more sympathy and compassion for hearing impaired and deaf people

than those with verbal disabilities.

http://www.cherab.org/information/familiesrelate/whatswrong.html

Through CHERAB we receive many emails in private. I just asked this

parent if I can post her message here which I sometimes do when I

feel this group will provide more help then we can alone. This

message is a perfect example of what I just brought up, and if you

want to contact this parent let me know:

" Hello,

I have just discovered your web site and I finally have hope. I (as

well as several of his therapists) strongly believe that our son

____, 3 yrs old, is misdiagnosed as autistic. The county is trying

to place him in an autistic support class with ABA. I am STRONGLY

convinced he is verbally apraxic as well as somewhat sensory

integration dysfunctional. He tests moderately autistic due to his

lack of verbal and non verbal communication skills. Please help us

find a doctor or SLP in the Philadelphia area who can properly

evaluate and diagnose him as soon as possible. Cost is not an

issue.. we are desperate to get him accurately diagnoses and

enrolled in a proper preschool therapy program. He is very

sensitive and feel he would be emotionally damaged by a " forced

training " program such as ABA. With our close supervision and

involvement he has done well with county in home care that is

sensory integration /floor time based but his language has not

improved much. Thanks in advance for the reference.

____(___ mom)

Surprisingly this family is aware of what I've been trying to point

out for awhile now as a group. There is a rise in neurologically

based multifaceted communication impairments in general. Some (very

rare) only have verbal aspects to the impairment -however most

apraxic children today also have mild soft signs of hyptonia an/or

sensory integration dysfunction, and or motor planning deficits in

the body, and or problems with constipation etc. And the diagnosis

a child may receive that is a late talker can depend on the day of

the week, who the child is taken to, and where you live in the

country. (California -most likely for children with no signs of

autism at all outside of not talking " PDD NOS with history of

apraxia " )

http://www.cherab.org/information/adhd-speech.html

All " late talker " children may not require the exact same

treatments, however there are certain therapies that are benign

whether they are needed or not -speech and occupational therapy

being two of them. While 75% of late talkers will " just start

talking " due to the fact they had just a simple delay in speech -we

need to be aware of the other 25%. The chance of getting hit by

lightning, or getting Lyme disease from a tick, or West Nile from a

mosquito, or SARS from someone coughing, or anthrax from a letter

are all much lower in comparison. But does the public know the

warning signs of apraxia?

Our of the 25% it gets confusing in that the child can have any

number of reasons for an impairment of speech, and the disorders of

speech and of language can overlap. In fact while many children

with autism and PDD have apraxia -very few apraxics have autism.

This is because while there was a 4 fold rise in autism -there was a

30 fold rise in speech and language disorders in the same 10 year

time period.

http://www.cherab.org/information/geiermd.html

We have a few members here who have one child that is diagnosed as

apraxic, one who is diagnosed autistic. One such set of parents is

Jeannie and Ray Buesser. Their first son, Danny, died of a fast

growing cancer at four -just a week after diagnosis. Their second

son, Adam has apraxia and ADHD, and their third son, Josh has

PDD/autism. (and she is from NJ) As Jeannie said " all the speech

therapy you give to my autistic son Josh won't help him talk -he

needs ABA therapy, but all the ABA therapy you give to my apraxic

son Adam won't help him talk, and could hurt him. He wants to talk

and he needs motor planning therapies to teach him how. "

As Jeannie said, ABA therapy when used with a child who can't talk

but desperately wants to is not only not appropriate -but is known

to be detrimental in cases. We need to raise awareness so that what

happened to who is also from PA by the way (and her and her

family are willing to be interviewed) won't happen to others.

http://www.cherab.org/news/.html

You also may be interested in knowing that there appears to be areas

of the country where the chances of having a child with apraxia -a

condition that used to be considered rare - are high. In addition -

it appears that the adults we know that grew up with apraxia (the

way it used to be known) do not have the multisensory aspects we are

seeing today.

http://www.cherab.org/news/Save.html

And then...there is the best kept secret the world needs to know to

help all these children. Schools of Fish Help Children Learn to

Talk. Without EFAs we have members in our group who remained

nonverbal up till nine, or even up to 17 in the case of .

http://www.cherab.org/information/dietaryeffects/Englemed.html

Those here are fortunate because at least they have the information

and then they can choose to do what they want with it. In most

cases the children in our group do succeed like my son Tanner

http://www.cherab.org/information/familiesrelate/letter.html but as

just posted, it makes us nervous to know that we don't know

all the answers for their future.

We as the parents of the children that can't speak for themselves

yet want to bring them a voice. Please help us Sheri and if you

need any help from anyone here just name the state or country and

we'll find you parents and children to interview.

So...what is the new magazine?

=====

[Guest guest]

>

> There are a two very huge things coming up. One is a feature

> article in a respected medical publication within the next month or

> so, and one is a Nationwide show coming up this week which I will

> announce this week.

>

That's very cool. Sounds like you're starting to get people to take

notice.

Most parents of late talkers as well as pediatricians don't view

> a " typical " late talker at 2 as anything to worry about ( " certainly

> he isn't autistic so none of this has anything to do with him! " )

and

> speaking of " him " -most of the members in our group have boys -yet

> as a recent NY Times article stated just the other day: " There's a

> kind of a sense when you see that in a boy that he'll catch up,

that

> he's just a late talker, " Dr. Sices said. In fact, she added, the

> opposite is true. Disorders involving serious speech problems are

> twice as likely to be diagnosed in boys as girls, Dr. Sices said.

> " Both boys and girls benefit greatly from early detection of

language

> delays, " she said.

> http://www.nytimes.com/2004/02/03/health/03DISP.html?

ex=1076389200 & en=a2a2f3943321c248 & ei=5062 & partner=GOOGLE

>

It seems to me that rather than try to tackle the whole topic, that

you pitch the topic around as manageble article topics. Like, " 10

signs that your child needs speech therapy " or " why speech problems

are more likely to be diagnosed in girls - what parents of boys need

to know " - that sort of thing.

There is

> more sympathy and compassion for hearing impaired and deaf people

> than those with verbal disabilities.

Do you think it's because they understand it better? I'm not at all

sure why people act the way they do, but it's my gut feeling that

when the reasons why your child can't converse " normally " are better

understood that it would foster the same sympathy and compassion. I

really think *most* people are kind and compassionate - but they

aren't good at extending that to things they don't understand.

> You also may be interested in knowing that there appears to be

areas

> of the country where the chances of having a child with apraxia -a

> condition that used to be considered rare - are high. In addition -

> it appears that the adults we know that grew up with apraxia (the

> way it used to be known) do not have the multisensory aspects we

are

> seeing today.

> http://www.cherab.org/news/Save.html

This is where you'd hit up editors at regional publications.

Philadelphia Family, Atlanta Parent, that sort of publication, as

well as the lifestyle publications like Cinncinatti Life, etc. (I

don't know that those publications actually exist, just making the

point so all of you in different geo regions can find the magazines

near you)

>

> And then...there is the best kept secret the world needs to know to

> help all these children. Schools of Fish Help Children Learn to

> Talk. Without EFAs we have members in our group who remained

> nonverbal up till nine, or even up to 17 in the case of .

> http://www.cherab.org/information/dietaryeffects/Englemed.html

This is what the TV people will likely want to capitalize on. That

seems to me to be the most dramatic on film. But I could be

wrong!!

>

> We as the parents of the children that can't speak for themselves

> yet want to bring them a voice. Please help us Sheri and if you

> need any help from anyone here just name the state or country and

> we'll find you parents and children to interview.

>

> So...what is the new magazine?

The new magazine I'm publishing is REAL. www.realmagazine.net It's

a national magazine like MORE, O (Oprah), or FAMILY CIRCLE. And

unfortunately I don't have time to pitch these articles myself around

the country, but I know some very good writers. If you agree, I'll

ask some to email you directly with info on themselves and you can

see what they can do for you. Not only will the writers benefit by

finding good stories to write about, and therefore get paid!, but the

stories will start to surface.

Sheri

[Guest guest]

Sherri congratulations on your new magazine which looks amazing.

http://www.realmagazine.net (to everyone else -make sure you

put .net and not .com) I'm so curious to read the first issue of

Real so of course have subscribed already!

It's obvious you are a pro at what you do in that you summed up what

is the best way to proceed (which was excellent advice) in just a

few words!

" If you agree, I'll ask some to email you directly with info on

themselves and you can see what they can do for you. "

I agree... please have whomever you wish email me at lisa@...

lisa at cherab.org , and if they would like to speak to either

parents or professionals just let us know.

Sherri, I want to just throw out an idea to you. What if you had a

department of your magazine called " Get Real! " where you have an

article about something that sounds off the wall, something most

would say " Get Real! " to -and then either Real tests it out, or has

an independent source put the " Get Real! " story to the test, and

publishes the results?

Like just for example, with:

" > And then...there is the best kept secret the world needs to know

to

> help all these children. Schools of Fish Help Children Learn to

> Talk. Without EFAs we have members in our group who remained

> nonverbal up till nine, or even up to 17 in the case of .

> http://www.cherab.org/information/dietaryeffects/Englemed.html

This is what the TV people will likely want to capitalize on. That

seems to me to be the most dramatic on film. But I could be

wrong!! "

It could be dramatic on film 'and' in print. And having it in print

could be easily be picked up by one the TV people (like Stefanie

Linzar who is now with Fox, or another producer like her who is

sensitive to the needs of the children to help bring them a voice)

Thank you again so much for all your incredible suggestions Sherri!

=====

[Guest guest]

Sheri,

Thank you again for your responding the email I sent. It is from

people like yourself and others who are open to different topics that

allow awareness to happen. I'm sure there are many parents of

children who have disorders that don't know help is out there and

they aren't alone. Have a wonderful valentines day, and buy something

for yourself.

Jeanne Buesser

> Sherri congratulations on your new magazine which looks amazing.

> http://www.realmagazine.net (to everyone else -make sure you

> put .net and not .com) I'm so curious to read the first issue of

> Real so of course have subscribed already!

>

> It's obvious you are a pro at what you do in that you summed up

what

> is the best way to proceed (which was excellent advice) in just a

> few words!