No-one has yet been able to explain why the original formula for Nutriiveda has had such a significant positive effect, however, some theories are based around the amino acid profile of the product, something supported by recent research in traumatic brain injury in mice that showed evidence of improvement in cognitive function and neural repair with a mixture of essential amino acids. In fact, the first study came out n December of 2009, just months after I had started using Nutriiveda for therapeutic effects. (please look at the following link)

Most recently, the Department of Defense together with the Institute of Medicine (IOM) published two studies in traumatic brain injury where “nutrients” such as “high protein” and “branched chain amino acids” which are naturally found in Nutriiveda through food, were shown to have a positive effects.  Please see the reference links here.

New Nutriiveda Achieve is a slightly different formula

Nutriiveda  or NV as it’s been known in our nonprofit, has been updated and “improved” and it’s now called Nutriiveda Achieve.   However as there is a different amino acid profile to Achieve and a few other variables that were changed,  we don’t know if the new formula will still have the same amazing therapeutic effects of the original until they can be compared side by side in individuals with the same conditions as well as in research.   The original Nutriiveda contained as a protein source a 100% natural 100% casein free whey isolate protein which is high in all of the amino acids and contains all of the essential amino acids.  Achieve contains a combination of  whey protein and  pea protein.  While pea protein is healthy, it has  a different and lower amino acid profile than whey protein.  The original Nutriiveda has a small amount of apple fiber,  Achieve replaced this with a different fiber source and added a bit more.   We have recommended fish (or algae) with the original Nutriiveda as the source of the Omega 3s and all the essential nutrients from fish and the original Nutriiveda.  Flax is added to the new Achieve as a source of Omega 3s.  Flax is healthy and fine for those that don’t need high levels of Omegas, but there isn’t enough of the essential fatty acids EPA and DHA from flax as the conversion is only around 5% to 10% from the ALA.   There are a few added ingredients to the new Achieve including ionic trace minerals and digestive enzymes.   We have put together a serving suggestion and recipe page for the original Nutriiveda.  The taste and texture of the new Achieve are reported to be improved.  Nutriiveda original comes in canisters.  Achieve uses an environment friendly green packaging which contains what would be two canisters worth in one reusable zip seal package.  Here is more information from the Zrii website on Achieve.  Here is more information about the original Nutriiveda ingredients and how it’s being used for therapeutic results over the past 18 months.   Like the new Achieve, the original Nutriiveda was not formulated for therapeutic use in neurological conditions, it was formulated for weight management and to support the metabolic system.  Here is the history of how the therapeutic use was discovered.

Research

As I have indicated in the past, taking Nutriiveda (NV) has resulted in improvements that are far more effective than any drugs or treatments on the market for conditions ranging from autism, stroke, and epilepsy to cognition and Alzheimer’s. These positive effects are not limited to any specific age groups, with results seen in ages ranging from toddlers through to seniors. For example, we have numerous reports of individuals coming off various medications for seizures due to Nutriiveda, only to have their seizures return when these same people stop taking the original Nutriiveda

There should be research starting soon. One of our Dads in the group is the Director of Global Development for a research company. David as a scientist is amazed by what he’s seen with Nutriiveda in his own 11 year old son who has made the same remarkable gains as my 14 year old son Tanner. And has like me seen regressions when off. His company plans to test both formulations of Nutriiveda (original and new Achieve) side by side in preclinical research. David and his CEO fly in late June to discuss the research plans. They have various standard scientific models to test numerous indications.

Again as David said typically they look for preclinical validation and then hope it works in the human population – for NV we know we are already getting remarkable professional anecdotal feedback of 100 percent success so now it’s just “going backward” to “fill in the blanks” as we know it already is working phenomenally well in humans.  Once this research is complete most likely the product will relaunch for everyone else. The preclinical research may only be a few months. Not sure about clinical after that.

How to order original Nutriiveda (NV) or the new Achieve

Anyone can order the new Achieve.  However the original Nutriiveda is currently only available to those that order through this website or the “Cherab Team”

Lisa Geng's apraxic son Tanner

If you are already a customer of through this website  pursuitofresearch.org or anyone from the Cherab team please call customer service at 866 349 9911 and let them know if you want the original or the new NV Achieve as you will have that choice. If you are an international customer that places orders here or through Speech411.com you can still receive the original NV this way.

As I know this is all a bit confusing- please email me, Lisa Geng at lisa@cherab.org

If you want to learn more about original NV please see our “Getting Started” page at the Pursuit site.

Please pass this on to anyone else you know that is getting the original NV for therapeutic reasons and needs to know this as again there is no longer any other source of the original Nutriiveda…for now.

Special thanks!

And because I can’t say this enough -thank you to all that wrote letters of support of keeping the original for those of us using it for therapeutic reasons.  While many will try the new Nutiiveda Achieve we are happy that we wish to thank Zrii for providing us with the choice to continue with the original until we have a chance to try both and/or until research can tell us more.  And of course ain regards to research a special thank you once again to David – who is helping me to make this all happen!  Right now only a few fortunate of us know about NV, soon the world will!

=====
Written by Lisa Geng, mother to two boys that were both “late talkers” who are doing great today. President and Founder of the Cherab Foundation, and Co Author of The Late Talker book St Martin’s Press

Is Your Child A Late Talker?

· Are they quiet? · Seem shy? · Not talking like their peers?

· Allow you or siblings to speak for them? · Do you wonder why?

Your baby’s babbling and toddlers first words can be music to your ears. When faced with a child who doesn’t speak or seems to have difficulty with words parents are often told that their child is “just a late-talker.” Unfortunately, all too often, that is not the case. The American Speech and Hearing Association (ASHA) estimates that 16 million Americans under the age of eighteen have a chronic speech-language disorder and that some 45 million Americans are affected by communication disorders of one kind or another which was announded by Congresswoman Carolyn McCarthy during the kick-off of the Better Hearing and Speech Month Health Fair in Washington, DC on May 8, 2002 .

Most parents, and even most pediatricians, are not concerned when faced with a two-year-old who passes all of his developmental milestones on time – except speech and language. However, they should be. It is vitally important to identify and treat speech and language challenges as early as possible in a child’s life, with a strong emphasis on the early intervention years of birth to three. At this age the brain is undergoing the most rapid development. No harm will come from therapeutic services. “Early intervention services are benign in their delivery but can be extremely beneficial. Don’t wait. Six months for a 2 year old is equivalent to a quarter of their lifetime developmentally” as Dr. Judy Flax says, who is a Research Coordinator of the Tallal Lab and a Senior Research Speech Pathologist for the Infancy Studies Laboratory at the Center for Molecular and Behavioral Neuroscience (CMBN) of Rutgers University, Newark, NJ

To find out about your nearest Early Intervention program you should call your local school district, they will be able to refer you to the program appropriate for your child’s age. Waiting to refer is a loss of precious time that may impact on the child’s learning ability and social-emotional well being in later years. Pediatricians and parents should insist on a speech and hearing evaluation as soon as there is a real concern about a child’s early language development. Early referral is endorsed by the American Academy of Pediatrics, and the American Academy of Neurology. In addition, “any child with a severe speech/language delay should have a comprehensive health and neurologic assessment to look for medical conditions that may be causing or contributing to the delay” as Dr.Marilyn Agin says, a developmental pediatrician who is the Medical Director for Early Intervention for NYC.

CHERAB is a non-profit foundation that focuses on raising awareness of Apraxia and other speech and language delays, and the importance of early intervention. Working with developmental pediatricians, speech pathologists, neuroscientists and major hospitals the CHERAB Foundation is working towards research on therapies which may help late talkers with Apraxia, Dysarthria, delayed language development, Autism and other speech and language impairments. A list-serv overseen by pediatricians, speech-language pathologists, and educational consultants is run by CHERAB and can be found at their web-site. Through the list you can connect to many other parents who have children who have speech or language delays, and find out what they have been able to do to help their child.

Some speech disorders can overlap, or be misdiagnosed. For example, “Verbal apraxia, a disorder of central nervous system (CNS) processing, and dysarthria, a disorder of output, are commonly confused”, says Dr. Andrew Morgan, chief of child development at the Chicago College of Medicine. “Experts are able to differentiate between these two disorders by listening carefully to a child’s speech and by identifying certain physical clues”, says Dr. Morgan, but adds, “These disorders are poorly understood by physicians and by a lot of speech therapists as well.” It is possible for phonological disorders, apraxia and dysarthria to all occur together in the same child. Speech Language Impairments, which is connected to language based learning difficulties may also be present. And the severity of each may vary.

Apraxia is perhaps the most misunderstood of all the speech disorders. So, what is apraxia? Verbal Apraxia is a neurological motor speech impairment that involves a breakdown in the transmission of messages from the brain to the muscles in the jaw, cheeks, lips, tongue and palate that facilitate speech. There is no obvious weakness in these muscles and the child may well be able to move them quite happily when not trying to speak. Apraxic children, who are usually seen as “just late talkers” when young, are able to comprehend language at an age appropriate level, however have difficulty expressing themselves using speech. With apraxia, a child knows what he wants to say but there is a road block obstructing the signal from the brain to the mouth. For any child with a speech disorder, but especially with apraxia, the earlier therapy is begun, the better the results for your child and their social-emotional development.

Your Child’s Language Development

So how do you know when your child is having problems with speaking? When is a good time to seek out help? Being aware of average speech milestones can also help you decide whether or not to speak to your doctor. Some guidelines are provided here for your information, but if you have concerns about your child’s speech or language development, or any other developmental issue, make an appointment with your pediatrician so you can discuss these issues. While the average milestones are a good way to measure development, every child develops at their own pace, and this overview should not be used to diagnose a specific problem.

Normal Language Milestones – Clues of a Possible Problem
Typically seen in first 6 months
· Responds to name by looking for voice · Can regularly find speaker or source of sound · Cooing, gurgling, chuckling, laughing ·Imitates sounds and actions · Enjoys social games (peek-a-boo, pat-a-cake) · Babbling (bababa, mamama)

Cause for concern in first 6 months
· Cannot focus, easily over-stimulated · Seems unaware of sound, Cannot find source of sound · Seems unaware of people and objects in environment · Does not seem to understand or enjoy imitating · Lack of connection (eye contact, vocal turn-taking)
· No babbling, or babbling with few consonants

Typically seen in first 9-12 months
· Attracts attention by vocalizing · Waves bye · Vocalizations that sound like first words (mama,dada) · Clearly indicates desire for objects · Imitates new sounds and actions

Cause for concern in first 9-12 months
· Easily upset by sounds that would not upset others · Lack of response indicating comprehension of words · Lack of consistent patterns of babbling · Does not clearly indicate desire for objects

Typically seen in first 12-18 months
· Single word production begins · Requests objects: points, vocalizes, word approximations · Gets attention vocally or physically (mommy) · Knows adult can do things for them (wind up a toy) · Uses “ritual” words (bye, hi, please, thank-you)
Protests: Says no, shakes head, moves away etc) · Comments: Points and vocalizes or uses word approximations) · Acknowledges: Eye contact, vocal response, repetition of word

Cause for concern in first 12-18 months
· Lack of communicative gestures · Does not attempt to imitate or produce single words
· Does not persist in communication (may hold hand up for help, but gives up if adult does not respond immediately) · Limited comprehension (understands less than 50 words) · Limited vocabulary (speaks less than 10 words) · Lack of new words between the age of 12-18 months

Typically seen in first 18-24 months
· Uses mostly words to communicate · Begins to use two word combinations (more cookie etc) · By 24 months has more than 50 words, or word approximations

Cause for concern in first 18-24 months
· Relies on gestures to communicate · Limited vocabulary (speaks less than 50 words)
· Does not use any two word combinations · Limited consonant production · Mostly unintelligible speech · Regresses in language development: Stops talking, repeats phrases inappropriately

Typically seen in first 24-36 months
· Engages in short dialogues · Expresses emotions · Begins using language in imaginative ways · Begins providing descriptive details when speaking · Begins to use articles and word endings (a, the, ing,) uses plurals (cats)

Cause for concern in first 24-36 months
· Words limited to single syllable and no final consonants · Few or no multiword utterances · Does not demand a response from a listener · Asks no questions · Speech difficult to understand · Tantrums when frustrated · Echoing of speech without communicative intent

Adapted from Clinical Practice Guidelines Communication Disorders III 22-25
In addition, the policy statement from the neurology journal Neurology, (August, 2000), states that Absolute Indications for Immediate Evaluation include,
· No babbling or pointing or other gestures by twelve months · No single words by sixteen months · No two-word spontaneous phrases by twenty-four months · Any loss of any language or social skills at any age.

Oral-Motor Problems

Early feeding problems could be a sign of later speech challenges. The same muscles that are used for eating are used for speaking. A baby that has trouble nursing could be a early sign that the baby has muscle weakness in the oral motor area for example. If oral-motor difficulties are present your child should have an evaluation by a pediatric medical and oral motor speech expert to determine the cause and best therapy to possibly prevent some future speech problems. A few possible signs of oral-motor problems are outlined next.

Does your child have difficulties with any of the following?
· Blowing (unable to blow out birthday candles, or blow bubbles by one year) · Kissing or making a kiss face · Licking his lips · Imitating facial expressions such as smiling · Chewing or transitioning to solid foods · Excessive drooling

When trying to speak does your child?
· Display groping behaviors, searching for proper mouth position, silent posturing, dysfluencies · Show expressive language disturbances: limited vocabulary, grammatical
errors, disordered syntax · Make up sign language, or show frustrations when not understood?

It is important to note that some children have no difficulty with oral-motor movements, and may also pronounce speech clearly, but still may have difficulty learning language. There are many different types of speech and language problems, which together represent the number one learning disabiltiy in schools today. That is why again it is important to seek an assessment if a child is not attaining the language milestones at the expected age. Early intervention is key to your child’s development. If you have any concerns about your child’s speech or language development be sure to express them to your child’s doctor. If you want to find out more about early speech and language development and CHERAB’s efforts to help children with speech and language delays you can contact the group or visit the web-site at:

Book: The Late Talker, What To Do When Your Child Isn’t Talking Yet Dr. Marilyn C. Agin, Lisa F. Geng, Malcolm Nicholl

CherabFoundation
Communication Help, Education, Research, Apraxia Base
Main Websites: Cherab.org CherabFoundation.org
Main Online Support Groups: Childrensapraxianet Apraxia.org
Twitter @TheLateTalker
PO Box 8524
PSL, Florida 34952
772-335-5135

To find a Speech Language Pathologist near you:

American Speech-Language-Hearing Association (ASHA)
10801 Rockville Pike
Rockville, MD 20852
Phone: 1-900-638-8255
301-897-8682 (Voice or TTY)
Web: asha.org

Acknowledgements:

Marilyn Agin MD
Medical Director NYC Early Intervention, Advisor Cherab Foundation, co author The Late Talker book

Lisa Geng
President and Co-Founder of Cherab Foundation, PursuitofResearch.org, co author The Late Talker book

Cheryl Bennett Johnson SLS/MA Educational Consultant
VP Cherab Foundation, NJ State Teacher Representative

Paula Tallal, Ph.D
Rutgers’s University, Board of Governor’s Professor of Neuroscience
Co-Founder, Scientific Learning Corporation, Advisor Cherab Foundation

Also See The Cherab Foundation Brochure

You can pre-order this wonderful book from Amazon at the following link:
Nobody Ever Told Me (or my Mother) That!: Everything from Bottles and Breathing to Healthy Speech Development

Or order from the publisher
http://www.sensoryworld.com/generalsensory.html

Here’s a note from the author Diane Bahr, MS, CCC-SLP who is also a member of our group. If anyone has any specific question for Diane please ask!

Dear Friends and Colleagues,

I would like you to know that the parent book I have been working on for the last five years will soon be available. I wrote this book to share information that therapists often know, but parents of typically developing children, pediatricians, and others frequently do not know. It is also meant to help parents and others identify signs of problems that may be easily corrected when identified early.

The book provides specific information on feeding, speech, and mouth development so parents and others may be more proactive in a child’s normal developmental processes. It also has a chapter on using the information with children who have special needs.

The book is titled Nobody Ever Told Me (or My Mother) That! – Everything from Bottles and Breathing to Healthy Speech Development. It is being published by Sensory World (an imprint of Future Horizons), which can be found at http://www.sensoryworld.com

Many of you have supported me through the writing process in a variety of ways, and it has truly been a journey. Thank you for your support during the researching and writing process. I am attaching the preorder form as many of you have asked when the book will be available. The book will also be available on Amazon.

I hope the book will make the lives of parents, children, and therapists a little easier. I also hope you are doing well.

Best wishes,

di

Diane Bahr, MS, CCC-SLP

Dear CHE Partners and Friends:

Please join us for several upcoming important CHE calls covering a range of topics from endocrine disruption (CHE Cafe call) to healthy schools (CHE Alaska call) to international environmental health issues during the October Partnership call with David Gee

CHE Cafe Call with author Douglas Abrams, Eye of the Whale
Wednesday, September 30, 2009 at 11 AM Pacific / 2 PM Eastern

Join Elise Miller, CHE Director, for a conversation with Douglas Abrams, author of the newly released novel Eye of the Whale. The novel weaves science throughout the story, addressing important issues of endocrine disruption and toxins. Abrams will talk about his writing process, how he included leading scientists, physicians and others in his research and why he chose to address the issues of endocrine disruption in his work.

Participants do not need to RSVP for this call. Please join the call by using the following dial-in information:

1-270-400-2000
Access code: 198686#

*****

CHE Partnership Call: Late Lessons From Early Warnings: the Precautionary Principle 1896-2000
a conversation with David Gee
Thursday, October 15, 2009 at 10 AM Pacific / 1 PM Eastern

Join CHE on for an international conversation with David Gee, Senior Advisor at the European Environment Agency (EEA). Michael Lerner, President of Commonweal, will discuss with Gee a wide variety of topics of importance to environmental and human health, including chemical science and policy, recent work in the field of EMF science and the far-reaching framework of ecological health and the implications such a framework has for policy changes.

RSVP for this call

*****

CHE Working Groups offer a variety of calls throughout the year to their members. If you are not a member of a particular working group, you are still invited to participate in a call, and we encourage you to consider becoming a member of the working group. For more information on how to participate in a working group contact: info@healthandenvironment.org

CHE LDDI
Quarterly Working Group Call
Tuesday, September 29, 2009 at 11 AM Pacific / 2 PM Eastern
Dial in number: 1-270-400-2000
Access code: 198686#

CHE Alaska
Creating Healthy Schools in Alaska: What You Need to Know to Protect Children from Toxic Exposures
Wednesday, September 30, 2009 at 9 AM Alaska / 10 AM Pacific
To RSVP and receive dial-in information contact Alaska Community Action on Toxics at 907-222-7714 or email sarah@akaction.org
More information and background resources

CHE Mental Health and Environment Working Group Call
Friday, October 9, 2009 at 10 AM Pacific / 2 PM Eastern
Please contact Ed Seliger at NADD for dial in information at eseliger@thenadd.org

CHE Metabolic Syndrome Discussion Group Call
Tuesday, November 3 at 11 AM Pacific / 2 PM Eastern
Dial in number: 1-270-400-2000
Access code: 198686#

*****
Announcements

Northwest Children’s Environmental Health Forum

CHE-WA’s Children’s Environmental Health working group is hosting a Northwest Children’s Environmental Health Forum October 1-2, 2009 at the Tukwila Community Center. Confirmed national speakers include Ted Schettler, MD who will provide an overview of children’s environmental health issues, Shanna Swan, PhD speaking on endocrine disruptors and children’s health, Bruce Lanphear, PhD speaking on neurotoxicants and children’s brain development, and Michael Skinner, PhD addressing multigenerational health impacts linked to environmental exposures.

For more information and to register visit the forum website

Anyone interested in being involved with this event, or who would like to learn more about the efforts of the CHE-WA children’s environmental health working group may contact Margo Young at young.margo@epamail.epa.gov, Gail Gensler at gail.gensler@kingcounty.gov, or Aimee Boulanger at aboulanger@iceh.org.

We welcome any questions or feedback you may have about CHE Partnership Calls.

Sincerely,

Erika Sanders, Administrative Coordinator
Collaborative on Health and the Environment
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http://augustafreepress.com/2009/09/22/chris-dewald-aphasia-and-apraxia-the-same-but-different/

Chris DeWald | Aphasia and apraxia: The same, but different
September 22, 2009

Trying to decipher and also remembering the difference is close to knowing all the whos in Whoville. Yeah, I bet everyone remembers Cindy Lou Who. I have always thought that the speech therapist told me I had aphasia, but reviewing my notes the other day, I read “apraxia.” Gee Golly, what is the difference? I always used to say it’s a stroke thing. That covers it, huh? A little knowledge does not hurt, so here we go!

According to NIDCD, aphasia is a disorder that results from damage to portions of the brain that are responsible for language. For most people, these are areas on the left side (hemisphere) of the brain. Aphasia usually occurs suddenly, often as the result of a stroke or head injury, but it may also develop slowly, as in the case of a brain tumor, an infection, or dementia. The disorder impairs the expression and understanding of language as well as reading and writing. Aphasia may co-occur with speech disorders such as dysarthria or apraxia of speech, which also result from brain damage.

Symptoms

A person with aphasia may:

• Speak in short or incomplete sentences
• Speak in sentences that don’t make sense
• Speak unrecognizable words
• Not comprehend other people’s conversation
• Interpret figurative language literally
• Write sentences that don’t make sense

The severity and scope of the problems depend on the extent of damage and the area of the brain affected. Some people may comprehend what others say relatively well but struggle to find words to speak. Other people may speak more clearly than they can write.

Your doctor may refer to one of three broad categories of aphasia — nonfluent, fluent and global — that describes what region of the brain was damaged and how communication is usually affected.
The two primary language networks for most people are located in the brain’s left hemisphere.

Nonfluent aphasia. Damage to the language network near the left frontal area of the brain usually results in Broca aphasia. It’s also called nonfluent aphasia. People with this disorder struggle to get words out, speak in very short sentences and leave out words. A person might say, “Want food” or “Walk park today.” Although the sentences aren’t complete, a listener can usually decipher the meaning. A person with Broca aphasia may comprehend what other people say to some degree. They’re often aware of their own difficulty in communicating and may get frustrated with these limitations.

Fluent aphasia. Wernicke aphasia is the result of damage to the language network in the middle left side of the brain. It’s often called fluent aphasia. People with this form of aphasia may speak fluently in long, complex sentences that don’t make sense or include unrecognizable, incorrect or unnecessary words. They usually don’t comprehend spoken language well and often aren’t aware of their own difficulty communicating.

Global aphasia. Global aphasia results from extensive damage to the brain’s language networks. People with global aphasia have severe disabilities with expression and comprehension.

What is apraxia of speech?
Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.

What are the types and causes of apraxia?
There are two main types of speech apraxia: acquired apraxia of speech and developmental apraxia of speech. Acquired apraxia of speech can affect a person at any age, although it most typically occurs in adults. It is caused by damage to the parts of the brain that are involved in speaking, and involves the loss or impairment of existing speech abilities. The disorder may result from a stroke, head injury, tumor, or other illness affecting the brain. Acquired apraxia of speech may occur together with muscle weakness affecting speech production (dysarthria) or language difficulties caused by damage to the nervous system (aphasia).

What are the symptoms?
People with either form of apraxia of speech may have a number of different speech characteristics, or symptoms. One of the most notable symptoms is difficulty putting sounds and syllables together in the correct order to form words. Longer or more complex words are usually harder to say than shorter or simpler words. People with apraxia of speech also tend to make inconsistent mistakes when speaking. For example, they may say a difficult word correctly but then have trouble repeating it, or they may be able to say a particular sound one day and have trouble with the same sound the next day. People with apraxia of speech often appear to be groping for the right sound or word, and may try saying a word several times before they say it correctly. Another common characteristic of apraxia of speech is the incorrect use of “prosody” — that is, the varying rhythms, stresses, and inflections of speech that are used to help express meaning.

Where can I find more information?
NIDCD maintains a directory of organizations that can answer questions and provide printed or electronic information on apraxia of speech. Please see the list of organizations at www.nidcd.nih.gov/directory.
Use the following keywords to help you search for organizations that are relevant to apraxia of speech:
· Apraxia
· Speech-language pathologists

For more information, additional addresses and phone numbers, or a printed list of organizations, contact:
NIDCD Information Clearinghouse
1 Communication Avenue
Bethesda, MD 20892-3456
Toll-free Voice: (800) 241-1044
Toll-free TTY: (800) 241-1055
Fax: (301) 770-8977
E-mail: nidcdinfo@nidcd.nih.gov

I have found the following sites very helpful. If you desire to see a keyboard example, please go here: www.aphasia.com.
There is also the Aphasia Hope Foundation to look at for video presentations: www.aphasiahope.org/media_resource.jsp?id=34.
The National Aphasia organization can be found here: www.aphasia.org/Aphasia%20Facts/aphasia_faq.html.

I have attached two video presentations if anyone has issues with reading:
- www.youtube.com/watch?v=Bk13HLma2CI
- www.youtube.com/watch?v=kaVLy_5WhTM&feature=related

My name is Dr. Renai Jonas. I am a Speech and Language Pathologist and have been practicing for the past 35 years. I provide therapy for children with a variety of diagnoses. My area of expertise is Childhood Apraxia, Autism, and children with neurological impairments. I currently teach at the local universities and present at conferences and workshops. I have published and I am presently writing a handbook for typically functioning children as well as special needs populations such as children with Apraxia and Cerebral Palsy.

Please fill in the information requested below. This information will be used to help children with Apraxia develop at a faster pace. It will also provide information to be included in a publication.

My caseload consists mostly of children with Apraxia from ages two years and up. I treat several older children (5 years and older) with Childhood Apraxia. The primary objective for these children is to produce intelligible words, phrases, sentences, and conversation. Here are the first fifty words that were targeted for a 6 year old with Apraxia.

>> Download the Questionnaire For Dr Jones

If you want to raise awareness about speech disorders here’s a press release you can share with your local media. Find out the name of the health and education correspondents. Call them up to outline the situation. Then send the press release to them. Call them again later to see if they need more information. Best of all make your family available to be interviewed to personalize the story. The first is a brief, which is good for TV or radio -just to snag attention. The PR release is more suitable for newspapers..but could be sent as a follow-up to TV.

Story Idea

They’re children without a voice—literally. They’re not able to speak at all while infants of the same age are talking like crazy, experimenting with new sounds and new word combinations all the time these kids are intelligent. They know what they want to say—but the words just won’t come out. It’s a frustrating and agonizing for them and their parents. Often parents are reassured by friends, relatives and even their pediatricians: “Don’t worry, he’s just a late talker.” But, for a dramatically increasing number of children that’s not true. Tens of thousands of American children don’t have a speech delay. They have a serious speech disorder. And if they don’t get intensive therapy at a very young age—they may never speak properly. It’s a problem that’s getting worse. In a 10-year period which saw a four-fold increase in autism, there was a staggering 30-fold increase in children with speech and language disorders. But it’s a problem that gets surprisingly little attention.

The non-profit group, Cherab, is now seeking to raise awareness with the public—and health professionals. Cherab president Lisa Geng is also co-author of a new book, “The Late Talker: What To Do If Your Child Isn’t Talking Yet.” Co-author Marilyn Agin, M.D., is a developmental pediatrician and medical director of early intervention for New York City .

Contact: Lisa Geng
E-mail: lisa@cherab.org

For Immediate Release
Non profit group speaks up for children who live in a world of silence

Billy is two years old—and he’s not uttered a word. His parents haven’t even heard him say “mama” or “dada.” Everyone—including their pediatrician—has told them not to worry because he’s “just a late talker.”

And quite often that’s sound advice. But for Billy and tens of thousands of infants like him it’s not that simple. A dramatically increasing number of children who don’t speak when they’re expected to speak don’t have a developmental delay but a serious neurological disorder that needs early and intensive treatment. US Department of Education statistics reveal a 30-fold rise in speech and language disorders, compared with a four-fold increase in autism. Yet it’s a problem that’s received surprisingly little attention.

Now a non-profit group called Cherab (Communication Help, Research, Education Base) is spearheading a campaign to bring greater awareness to these little known conditions. Cherab is providing a voice for kids who can’t speak up for themselves, children who live in a frustrating world of silence where they struggle to make their needs known. Says the group’s president, Lisa Geng, mother of a child with apraxia, a serious neurological speech disorder, “Children with speech disorders are often misdiagnosed as autistic or mentally retarded. They frequently do not get the therapy that they need. It’s a major uphill battle. If the proposed legislation becomes law, it will set us back thirty years.” Developmental pediatrician Marilyn Agin, medical director of New York ’s early intervention program agrees. Co-author with Geng of a new book called “The Later Talker: What To Do If Your Child Isn’t Talking Yet,” she says, “It is so important for children to be evaluated and treated at an early age. Adopting a wait and see approach can in some circumstances have devastating consequences.”

In their book Agin and Geng provide:

• A review of the developmental milestones and what to do if expectations are not met.
• An explanation of the various speech and language disorders, and recommendations on when and how to seek the right kind of professional evaluation.
• An exploration of the appropriate therapies a child should receive from speech-language pathologists (SLPs), and how to support their efforts.
• Exercises to do at home with a child.
• Tips for easing the inevitable frustration a late talking child experiences—as well as advice to parents on coping with their own frustrations.
• An explanation of parents’ rights and how to navigate the school system and insurance maze on the child’s behalf.
• Stories of other parents who have struggled with a child’s speech development problems.

(Above is a general press release. For parents who want to do something locally, insert at the end a personal quote…e.g. Philadelphia mother, Mary Smith, who has a xx year old child with a speech disorder, says, “You wouldn’t believe how hard it is to get the right kind of therapy. It’s a never-ending battle with the school system and the insurance company.” You could use this quote -or if you’re more adventurous add an entirely new quote. If you are mentioned in The Late Talker book, you could get media attention by mentioning the fact that you’re in the book. Anyone who is a member of the nonprofit Cherab group could get media attention by mentioning the fact that you’re a member.)

Special thanks to Jenny for the Chinese-English Translation. I also have below the Babelfish translation as that is what Lily and I typically use and I’m super impressed with how well it translates! I am going to post this both in English and in Chinese in hopes that it helps parents who speak either (or both) languages! There are a number of very cool therapy photos in the photo section of http://www.apraxia.org which Lily has also sent -and I have a few more to add. Once our new CHERAB website is up we will be able to have all of this on one page!

~~~~~~~~~~~Lily’s letter- translated by Jenny

Jacky was in hospital because of a high fever when he was 2.3 years old. He didn’t speak and always had bad temper. Therefore he had evaluated as autism at the age 2.5. Because he was normal before 1.5, I even thought it was the injection that made him autistic at that time.

Lisa, through your help, I know the apraxia children need PROMPT SLP very much. Therefore I asked Ms Lau to teach Jacky. Jacky has ST every Saturday or Sunday afternoon at home. At first, Jacky could only pronounced /a/ /e/ /u/ and /ma/. Now his vocabulary is booming even though some of them are unclear. Miss Ho is Jacky’s teach from July 2007 because of Ms. Lau’s pregnancy.

Jacky was evaluated as oral apraxia by Hong Kong University on May 2007. They told me Jacky was not suitable for the case study and no cheap therapy could be provided. I was so mad about this, therefore I have to hire a SLP by my own.

Jacky had ABA therapy but failed. He always got angry on this. His cousin is his friend. She is a nurse. Jacky likes sport programs even though he can’t play very well. He can’t tell me what his dream is. But I believe he can one day.

Hong Kong is a seven-millions-people-lived beautiful island. Even though it is commercial, economic, still three hundred and two thousand different kind of handicapped people are under an unsound therapy service system. Neither the companies’ acceptance nor the government’s regulation to the insurance application of the handicapped children. That’s what we struggle for. HK$1,200 is given to every handicapped people by the government. Besides the early intervention, children under 18 take therapeutic classes at school for handicapped. For those who are above 18, they stay in the shelter center or factor till the end of their lives.

I love history and literature. I don’t’ have time to do what I want after I knew Jacky was autistic. I just study hard and try to help my poor son. Many experts told me that Jacky might not speak for all his life. It’s very difficult for me to understand that why many autistic children can speak, while others can’t. No one tells me that apraxia would happen to children until I read Lisa’ book – my poor son has apraxia.

My English is very poor, therefore I can’t discuss with you very often.

thanks Lisa for all your wisdom !!!

Thanks your help Jacky finds his sound !!!!

Lily in HK

~~~~~~~~~~~And since Lily and I have been communicating via Babelfish most of the time when we email back and forth as I don’t speak Chinese and she doesn’t speak English -here’s the way Babel fish translated the following. I find it fascinating that Babelfish has helped us to communicate where we wouldn’t be able to at all world’s away from each other speaking 2 different languages. Once again we have to stop and give thanks to…(think I’m going to say the computer huh?) fish for improved communication -what’s up with that?! (and so Lily can read this I’m translating this to Chinese via Babelfish and will put this below for her to read as well!) And Lily I would LOVE to come visit you in Hong Kong one day -or if you ever come here I’ll be your tour guide -maybe even making dreams come true at Disney?

Oh and PS -the just like in life is the same in both English and Chinese!

Jacky in 2-and-a-half years old by the child development scientist, child neurology department doctor appraises is the zi4bi4 syndrome child, (when his 1-and-a-half years old, development is in normal range), because 2 year old of 3 month has a fever with gastoenteritis enters the hospital, because he does not have the language and throws a fit frequently, doctor lets him see the child development scientist. (perhaps he after 1-and-a-half years old accept the vaccine injection is taken bad …….) Does not accept the disabled child in the Hong Kong Insurance company to apply for the insurance, and does not have the legal rule; Hong Kong Government for each disabled public figure every month 1200 Hong Kong dollar subsidies, below 18 years old in study child by school (Special educational institution) therapist treatment, and has the early education. above 18 years old the disabled public figure all turns over to “疪 to protect the center”, “疪 to protect the workshop”, is responsible in addition pilgrimage …… Hong Kong is a beautiful island, it has 7,000,000 people to live here, and the economy, the trade are developed, but has in this 7,000,000 people 320,000 has each kind of different disabled public figure, this 320,000 people live in not the perfect recovery treatment service, this is also the matter which from now on we will struggle …… I like the history and the literature, but after my son is sick, I again do not discuss the literature, the history; I only then study diligently the child who diligently how to help this not to speak, many zi4bi4 syndrome experts will tell me, the Jacky possible life not to speak, I will be disappointed when will let me difficult understand, why zi4bi4 syndrome child some will speak, some life does not speak? Is the Lisa book (Chinese version), has untied the answer for me—My pitiful child has “apraxia”, these ten several years do not have any expert to tell me unexpectedly in the world to have this kind of illness to occur on the child body …… Jacky has the feeling series being out of balance phenomenon, he also has the read-write barrier. The language aspect – in Lisa under your correspondence help, I understood that needs to have one to apraxia child to understand PROMPT the spoken language therapist, in 7-2006 starts welcome to teach Jacky to Ms Lau, Jacky by only then vowel a-e-u and ma, knows how things stand to the present ascends a tone and the word (some are not clear pronunciation); In 7-2007 change by Miss the Ho teacher (Ms Lau, because is pregnant stops teaches Jacky). Jacky every Saturday or the date accept the spoken language treatment in the afternoon in the home. 5-2007Jacky treats the clinic in Hong Kong University’s spoken language to accept the language appraisal, confirmed that has the oral cavity apraxia, but they tell me, Jacky is not suitable to make the lesson plan (teaching case), therefore is not Jacky provides the inexpensive treatment (to practise teacher by student); This lets me be indignant, I have to continue please the personal spoken language therapist. Jacky once met loves the ABA therapy, but is defeated, he always throws a fit. Jacky has a friend now—Younger female cousin – (nurse first-grade student). Jacky likes any sport program (, although he is not does very well). Jacky has not been able to express him now to have any dream, I believed that will happen one day he will tell us him the dream enterprise! (book – the secret, I thought that it will be – future science!!) I very regrettable (my not English), cannot discuss (language different – Chinese and English) frequently with you. Very happy could meet Lisa, Lisa in the pilgrimage to help Jacky to change his destiny – him to start study the speech …… Thanks Lisa for all your wisdom! Thanks your help Jacky finds his sound!!!! Lily in hk

Jacky在2歲半由兒童發展學家、兒童精神科醫生評估為自閉症兒童 , (在他1歲半時,發展是在正常范圍內) , 2歲3個月因發燒和腸胃炎入醫院 , 由于他沒有語言和經常大發脾氣 , 醫生讓他去見兒童發展學家 。

(也許他在1歲半接受疫苗注射後而發病……。)

在香港保險公司不受理傷殘兒童申請保險 , 並且沒有法律規定 ; 香港政府給每位傷殘人士每月1200港幣補貼 , 18歲以下在學兒童由學校(特殊學校)的治療師治療 , 另外有早期教育。

18歲以上傷殘人士一律歸「疪護中心」、「疪護工場」, 負責余下的人生旅途……

香港是一座美麗的小島 , 它有700萬人在此生活 , 並且經濟、商業發達 , 但是在這700萬人中有32萬是有各種不同傷殘的人士 , 這32萬人生活在不健全的康復治療服務中 , 這也是今後我們奮斗的事……

我 喜愛歷史和文學 , 但是自我的兒子患病後 , 我再也不去探討文學、歷史 ; 我只有努力鑽研怎樣幫助這不會講話的孩子 , 許多自閉症專家告訴我 , Jacky可能一生都不講話 , 我失望之余更讓我難明白 , 為什麼自閉症的孩子有的會講話 , 有的一生不講話 ? 是Lisa的書 (中文版) , 為我解開了答案—我可憐的孩子有「失用症」 , 這十數年竟沒有任何專家告訴我世界上有這種病症發生在兒童身上 ……

Jacky有感統失調現象 , 他也有讀寫障礙 。

語言方面 -在Lisa您的通信幫助下 , 我明白到失用症孩子需要有一位懂得PROMPT的言語治療師 , 在7-2006開始請到Ms Lau教Jacky , Jacky由只有元音 a-e-u and ma , 到現在有數拾個單音和單詞 (有的不是清楚的發音); 在7-2007改由Miss Ho 任教 (Ms Lau 因為懷孕停教Jacky )。
Jacky每星期六或日下午在家中接受言語治療。

5-2007Jacky 在香港大學的言語治療診所接受語言評估 , 証實有口腔失用症 , 但是他們告訴我 , Jacky不適合做教案 (教學案例 ) , 所以不為Jacky提供廉價的治療 (由學生實習任教); 這讓我氣憤, 我只好繼續請私人言語治療師。

Jacky曾接愛ABA療法 , 但失敗 , 他總是大發脾氣 。

Jacky現在有一個朋友—表妹-(護士一年級學生)。

Jacky喜愛任何體育節目 (雖然他不是做的很好)。

Jacky現在還不能表達他有什麼夢想 , 我相信終有一天他會告訴我們他的夢想事業 !

(書-the secret , 我認為它是-未來的科學!!)

我非常遺憾 (我不會英語), 不能經常和你討論 (語言不同-中文和英文)。

非常高興能在人生旅途中遇到Lisa，Lisa幫助Jacky改變了他的命運-他開始學講話……

Thanks Lisa for all your wisdom !
Thanks your help Jacky finds his sound !!!!

Lily in hk

~~~~~~~~~~

And I ‘think’ this is my message to Lily…Hi Lily!!!

我的英國翻譯了為繁体中文由Babelfish ：以下更新是關於Jacky由他的母親百合。 百合學會了力她的兒子Jacky把失用症晚健談的人書的漢語版本。 Jacky現在青少年，并且我希望那他是科學家的一天，因为百合說，因為他的故事明顯地展示我們怎麼需要更多科學家學習和知道失用症。失用症在童年，但是再次它也许开始doesn’ 那裡t末端it’ s可能改变生活…的損傷，但是與干預一个可能學會克服它。對詹妮的特別感謝漢語英語翻譯。 我也有在Babelfish翻譯之下那什麼百合和我典型地使用和I’ m超級留下深刻印象对它多麼恰當翻譯! 我張貼這用英语和用在希望的中文它幫助講任一種的父母(或兩個)語言! 有在百合也送了http://www.apraxia.org的照片部分的一定數量的非常涼快的療法照片。一旦我們新的CHERAB網站上升我們能有所有此在! ~~~~~~~~~~~Lily’ 詹妮翻譯的s信件 ~~~~~~~~~~~And，因为百合和我通过Babelfish大多時間溝通，當我們反覆發電子郵件作為I don’ t講中文和她doesn’ t讲英语- here’ s方式Babelfish翻譯了以下。 我發現它魅力Babelfish帮助我們传达我們wouldn’ 的地方; t能對在所有world’ 遠離彼此的s講2種不同語言。 再次我們必須停止和給感謝對… (認為I’ 去的m說計算機哼？) 被改进的通信的- what’魚; s與那？! (和百合能如此讀這I’ 翻譯此的m為漢語通过Babelfish，并且下面將投入此為了她能讀!) 并且我在香港會愿意來參觀您一天-或的百合，如果您来这里I’ ll是您的导游-甚而做夢想可能實現在迪斯尼？ ：-) 噢和的PS – ：-)像在生活中是同樣在英語和漢語!

CHERAB would like to graciously acknowledge the generous donation of these glossy brochures by Northern Speech Services with assistance from Nancy Kaufman CCC-SLP from Kaufman Children’s Center. These brochures were made up specifically to be handed out at the landmark Shafallah conference in Qatar that CHERAB was invited to which was in association with Newsweek magazine. CHERAB representatives Cindy and Khalid Mustafa attended amongst the hand selected guests which included such distinguished attendees and speakers as the prime minister’s wife Cherie Blair as key note speaker, Christopher Dickey, Regional Editor for Newsweek Magazine and Her Highness Sheikha Mozah Bint Nasser Al Misnad. Both Cindy and Khalid will be sharing more information and photos of their exciting first class trip to the Shafallah conference in Qatar soon!