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Late Talkers, Silent Voices Media Project

Help Little Tadgh

A Mom’s Cry For Help For Her Son

GoFundMe

Most of us sit at our computers, on our phones, on our tablets, with our normal functioning fingers, hands, arms, elbows, shoulders and knees; tapping our functioning feet; sipping, chewing, swallowing whatever we want, never thinking twice about our chromosomal make-up.

For almost-3-year-old Tadgh Magee of Dublin, Ireland, none of this is his norm. His life has been one long discovery of new diagnosis, new symptoms, new surgeries and new setbacks. Tadgh is the only recorded person in the world to have the chromosomal disorder he has. The typical manner in which our bodies tadgh5function are mostly foreign him.

In addition to or as a result of being the only known child in the world with a duplication short arm of chromosome 7 at band 7p14.3, precious little Tadgh is trying hard to make it through each day best he can. He is plagued with various heart, lung, brain and congenital disorders, body deformities, speech and sensory problems, was diagnosed with autism and speech delays, has an inability to feel pain normally, and a host of other medical conditions. When he cries he is unable to say why. In his situation there are so many abnormalities that it could be anything.

Tadgh’s daily life has been spent in and out of hospitals but there is nothing conclusive. He is under the care of numerous specialists who don’t consult with one another but rather contradict each other leaving his mother, Melissa, to connect all the dots on her own. She has so many questions for which there are currently no answers.

Melissa is neither a medical doctor nor researcher, but her last three years have been spent seeking help for her son. “I’ve rang all around the world. I rang Canada, I rang England, I rang America, I rang the NIH,” she says. “I keep hitting dead ends. Talks with Ireland’s Minister of Health proved useless as well.”tadgh3

She visited the U.S. with Tadgh in February of this year so he could be fitted for a special T-Joe Brace to correct his chest deformity. While here she contacted the Children’s Hospital of Philadelphia to inquire about additional testing. She was told the initial cost would be $60,000 plus additional fees for admittance. “I just don’t have that kind of money,” she said.

Through Cherab, Lisa Geng is assembling a team of medical specialists, doctors and therapists, in Florida, who are offering their services free of charge so the Magee family can delve deeper into this miraculous boy and hopefully come up with more answers. All we need to do is get them here!

“Despite all these diagnosis Tadgh is the most loving little man. He is so funny and coming on in leaps and bounds. Unfortunately he keeps getting new diagnosis and I don’t know what will happen in the near future. I know I won’t ever find a cure and have accepted that Tadgh is my beautiful rare unique miracle baby but I would hope to find somebody with a duplication at 7p14.3.” –Melissa Magee

People Trying To Help From Around The Globe

Melissa who lives in Ireland had shared the following cry for help on her personal Facebook page which has already been shared over 8 thousand time.  One of the parents that shared it was Trish Peck, a mom from China has a therapist for her son who is originally from Ireland who saw Melissa’s cry for help for her son Tadgh and shared it with Trish, who then shared the following on the Cherab support group on Facebook where Lisa Geng helped find professionals in Florida like Dr. Aylin Ozdemire, and Dr. Renai Jonas willing to donate their time to help  Also special thanks to writer/mom Nina Wolgelenter for writing up Tadgh’s story.

Professionals Helping To Donate Their Time To Help Tadgh In The US

  • Dr. Aylin Ozdemir (MD) “Dr. O”  Website  Jacksonville, Florida
  • Dr. Renai Jonas (CCC SLP)   Website  Boca Raton, Florida

If you are a medical professional that is interested in helping Tadgh anywhere in the world please contact us.

Melissa needs help getting to the US, the flight for their family alone will be around 2 thousand US dollars.  In addition any additional monies can go toward Tadgh’s medical fund.  Please help if you can.  Tadgh’s Gofundme account

Tadgh’s Facebook Pages

Main page

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Camden’s Birthday Party Brings Worldwide Awareness For Apraxia Which Started In a Cherab Support Group Message

Camden said the day after the party to his mom“Mama this has been the second best day of my life building Legos with you, my best day was yesterday.”

Camden’s birthday party has been the most awareness for apraxia in a few days than apraxia has had in over the past century!

It all started at the Cherab’s one support group on Facebook at apraxia.org when Camden’s mom shared to the group expressing her frustration about her son not having any friends to invite to his upcoming birthday party.   Lisa Geng who runs the group and is President of Cherab, and co author of The Late Talker suggested to the mom starting a page on Facebook that could be shared to get a few children there.

Thank you Facebook, original message shared at a Cherab support group

camdenspartystart

Traci started a Facebook page for Camden

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Thank you Reddit, and specifically r/uplifting news which is where Lisa Geng shared Camden’s birthday page

Lisa Geng immediately shared Camden’s Ultimate Water Balloon Birthday Party Invitation on Reddit where her post went to the front page of Reddit within hours.

reddit

Social Media helped give Camden the “Best Birthday Ever”

This short video from Newsy sums up the story!

National and International News

The following are just a few of the many news articles which cover Camden’s party and share awareness about apraxia at the same time.

‘Best birthday ever!’ Massive water-balloon fight rallies community for a cause

“Lisa Geng, president of the nonprofit Cherab Foundation, was excited to see the amount of people in support of Camden and the awareness they’ve raised for apraxia of speech. Her organization works to help kids with speech and language delays improve the way they communicate with others.

The Cherab Foundation helped spread the word about a little boy’s upcoming birthday party when his mother had originally worried that not enough people would be in attendance.

“I do hope Camden’s story not only shows the need to embrace those that are unique from others, share the beauty of human nature, but also that it may enlighten those parents of late-talking children about another condition— to confirm or rule out outside of autism or a hearing impairment when a child’s speech is not developing as it should,” Geng told TODAY.com.  Read more at Today

When No One Was Showing Up, the Internet Gave This 10-Year-Old the Best Birthday Ever

Eubank soon after posted her concerns on the Facebook page of the CHERAB foundation, a nonprofit speech disorder support group, where organization president Lisa Geng encouraged Eubank to reach out online and look for party guests outside of Camden’s normal circles.

Eubank’s original Facebook event went viral after it was posted to Reddit and attracted more than 5,000 likes by Tuesday afternoon, and the results were better than anybody could have expected.”  Read more at Mic.com

300 Strangers Show Up For Kid’s Epic Water Balloon Fight


by Katie Link, Christine Slusser
Newsy.com

“Camden is homeschooled because he has apraxia, which is a speech issue,” Camden’s father, Wayne Eubank, told WDBJ.

Apraxia is a disorder that causes people to have difficulty making accurate movements when speaking. Because of it, Camden said he felt isolated and had a hard time making friends — something his mom wanted to change.

Eubank at first reached out to a nonprofit support group for apraxia — The Cherab Foundation. A woman with the foundation suggested she share the news on Facebook; then, that same woman shared it on Reddit, where it went viral.

The post received thousands of likes and comments. Nearly 300 people showed up for the massive water balloon fight.”  Read more at Newsy

300 Strangers Show Up For Kid’s Epic Water Balloon Fight

Typical birthday parties include cake and, hopefully, some presents, too.

But what about a giant water balloon fight? That’s exactly what 10-year-old Camden Eubank from Roanoke, Virginia, wanted.

“Camden is homeschooled because he has apraxia, which is a speech issue,” Cameron’s father, Wayne Eubank, told WDBJ.

Apraxia is a disorder that causes people to have difficulty making accurate movements when speaking. Because of it, Camden said he felt isolated and had a hard time making friends — something his mom wanted to change.

Eubank at first reached out to a nonprofit support group for apraxia — The Cherab Foundation. A woman with the foundation suggested she share the news on Facebook; then, that same womanshared it on Reddit, where it went viral.

The post received thousands of likes and comments. Nearly 300 people showed up for the massive water balloon fight. Read more at ABC2news

Camden thanks President Obama

This is what President Obama sent Camden!

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Virginia Mom of Boy with Speech Disorder Uses Facebook to Invite Thousands to His Birthday Party: ‘He Has a Really Hard Time Making Friends’

For his 10th birthday, Camden Eubank of Roanoke, Virginia, asked his mom for a big water balloon fight. But his wish wasn’t so easy to grant because Camden has Apraxia, a speech disorder that makes it hard for him to make friends. Read more at People

Hundreds Of Strangers Show Up For Little Boy’s Birthday Party After Mom’s Heartfelt Plea

A Virginia boy’s birthday party invitation went viral and it showed just how many people know it’s OK to be different.  Read more at ABC11

This family didn’t think anyone would come to their son’s birthday party. They were very, very wrong

Camden, who is homeschooled, has a speech disorder called apraxia of speech, which limits his speaking abilities in social settings and makes it difficult for him to make friends, WDBJ7 reported. But thanks to the Internet, Camden now has friends aplenty. Read more at Desert News National

Roanoke boy’s birthday party goes viral, family feels “Reddit Hug”

Camden Eubank’s family wasn’t sure who would show up at the party, and said Camden has trouble making friends. Camden’s mom’s call for help online went viral, and about 300 people showed up, in addition to countless gifts sent from around the world thanks to popular online message board site Reddit.  Read more at WDBJ news

Hundreds attend party for ‘different’ Virginia boy who does not have a lot of friends

A 10-year-old Virginia boy had the birthday party of a lifetime over the weekend. Camden Eubank’s parents were initially concerned that not many people would show up to the water balloon fight party in Troutville. Camden, they said, is home schooled and does not have a lot of friends. He has a speech issue known as apraxia, his father said, which made making friends difficult for him. Read more at CBS 6

Why This Family Was So Overjoyed That Hundreds of Strangers Crashed Son’s Birthday Party

When a mom created an open invitation on Facebook last week to invite people to her son’s birthday party after being concerned that her son’s speech impediment and lack of friends would mean too few guests, little did she know the outpouring of goodwill it would generate. Read more at Good Morning America

Hundreds attend party for Va. boy with speech disorder

Camden, has Apraxia of speech which is a motor speech disorder. It means he has problems saying sounds, syllables and words because his brain has issues planning to move the body parts, such as the lips or tongue, needed for speech. Read more at MyFoxPhilly

Hundreds Show Up to Camden Eubank’s 10th Birthday Party

It all started with a mother’s Facebook post. She shared the story of her young son in need of friends for a small water balloon fight — Camden Eubank’s wish for his 10th birthday party. “I was just hoping a few Facebook friends would come and bring their kids”. Camden was born with Apraxia a condition that makes it difficult for him to speak and his mom says making friends hasn’t been easy. Read more at  ABC13 news

Mom Feared Her 10-Year-Old With Few Friends Would Have a Disappointing Birthday. The Internet Made Sure That Didn’t Happen in an Epic Way.

Her son, Camden, was turning 10 and wanted to have what she called the “ultimate water balloon fight party with 2,000 balloons and lots of kids.” The water balloons wouldn’t be a problem, but the kids, Eubank wrote, would. “The only problem is Camden has Apraxia of speech and because of the issues with articulation and some impulsiveness he has a really hard time making friends. We homeschool Camden because he would have a very hard time in a classroom setting, because he is hyperactive and as I mentioned above, impulsive. I also chose to homeschool him because I didn’t want the labels he would’ve gotten in a public school setting- those labels follow you the rest of your life,” Eubank’s post continued. The mom said her son usually plays with his older sister and her friend and, until recently, another boy in the neighborhood. This boy though, Eubank wrote, recently decided “he’s too cool to hang out with a ‘little kid that can’t talk right.’” Read more at The Blaze

Virginia boy’s birthday wish for new friends comes true thanks to Facebook, Reddit

Camden Eubank has apraxia of speech, coupled with hyperactivity and has trouble articulating words and saying sounds. Eubank’s parents decided that homeschooling was best for her son. With few friends and his speech issues, Camden’s mother went to Facebook to find a few people to help toss 2,000 water balloons. Read more at WPXInews

Hundreds turn up to celebrate Virginia boy’s birthday balloon bash

Camden has apraxia, a disorder that makes it difficult for him to talk to people, meaning Monday’s turn-out really meant a lot. One father drove from northern Virginia with his two sons to celebrate Camden’s birthday. “My oldest son Leon is a special needs child also and I know how difficult it is for him to make friends,” explained Ed Urbaniak. Read more at ABC8news

Roanoke boy’s birthday wish comes true

When Camden’s mother created the Facebook page “Camden’s 10th Birthday Party — An Open Invitation” last week, she thought she was planning a small get-together for her son, who has struggled to make friends because of a motor speech disorder. Camden lives with apraxia of speech, which hampers his ability to articulate words and say sounds. Read more at Roankenews

Boy’s Water Balloon Birthday Party Attracts Crowd of Hundreds

Camden was born with apraxia, a condition then makes it difficult for him to speak and mother says making friends hasn’t been easy. Watch video on ABC


ABC US News | World News

 300 Strangers Show Up For Kid’s Epic Water Balloon Fight

Boy’s water balloon birthday party goes viral

It’s a birthday party kids can only dream of. Camden Eubank turned ten Monday and these people, many of them strangers, are here for him. “Camden is homeschooled because he has Apraxia which is a speech issue.” Camden doesn’t have many friends, and his family didn’t know who would come. Close to three-hundred people showed up for the water balloon fight of a lifetime, including one who drove four hours. “I saw this on Reddit and I just thought it would be a good time to come out and show Camden just because he does have that speech delay doesn’t mean that people aren’t going to like him.” Read more at Fox2now

Go, Camden! 300 strangers grant birthday boy’s wish

Camden Eubank has a speech delay called apraxia. He is homeschooled and didn’t have a lot of friends because of the way he talks. But he does now! Read more at HLNTV

Reddit Saves Boy’s Birthday

According to his parents, Camden suffers from a speech delay known medically as Apraxia. They said Camden’s brain can’t always put the words together under social pressure, which makes it hard to make friends. Read more at The Daily Caller

Party Invitation Goes Viral, Hundreds Attend Birthday Bash For Special 10-Year-Old

Camden Eubank welcomed his 10th birthday in grand style after several dozen people showed up to make his dream of having a massive water balloon fight a reality. In the party invitation on Facebook, Camden’s mom explains why her son deserves to have this one wish. “Camden is turning 10 on July 6th and wants to have an ultimate water balloon fight party with 2,000 balloons and lots of kids. The only problem is Camden has Apraxia of speech and because of the issues with articulation and some impulsiveness he has a really hard time making friends” The Facebook party invitation explains that Camden is a precocious child that is home-schooled because his disabilities would not allow him to be in a normal classroom setting and also to protect him from cruel remarks by other kids. Camden is hyperactive and impulsive, which would probably get him in trouble in a more structured setting. Because of his developmental problems, the now 10-year-old has almost no friends. Camden suffers from a condition called Apraxia, a disorder of the central nervous system, a “neurological motor speech impairment that involves a breakdown in the transmission of messages from the brain to the muscles in the body, and/or the jaw, cheeks, lips, tongue and palate that facilitate speech.” This prevents Camden from having a normal life and friends. “He mainly plays with his older sister and her best friend and one other boy in the neighborhood. This friend is 11 and has recently decided he’s too cool to hang out with a ‘little kid that can’t talk right.’ So poor Cam is left with no one else to play with.”  Read more at Inquisitr

Go, Camden! 300 strangers grant birthday boy’s wish

Camden Eubank has a speech delay called apraxia. He is homeschooled and didn’t have a lot of friends because of the way he talks. But he does now! Read more at HLnTV

Camden’s Birthday Wish

One kid’s birthday wish turned into a giant community event. When Camden Eubanks asked his mom for the ultimate water balloon fight party, she had reservations. Camden is home schooled due to his apraxia (which causes issues with speech articulation). He’s been in speech therapy since he was 2 years old and has made vast improvement, but sometimes it can still be difficult. “He’s a regular little boy,” says his mother. “Camden is a math whiz, loves history, and wants to grow up to be a country singer like Luke Bryan.” Read more at The Roanoker

Hundreds celebrate Camden’s 10th birthday balloon bash

Camden has a disorder that makes it difficult for him to talk to people, so Monday’s turn-out really meant a lot. Read more at WSLS news

International Press!

‘It’s the happiest I’ve ever seen him’: More than 300 children show up to the birthday party of home-schooled boy after his mom’s Facebook plea

  • Camden Eubank is homeschooled due to a speech disorder
  • He doesn’t have many friends and wanted a water fight for his birthday
  • Mom posted an open invite to Facebook, which went viral
  • Over 300 people – mostly strangers – went to the party Monday night at Troutville Park, Virginia, after hearing about the party
  • An extra 200 from all over the world sent him presents via Amazon
  • Over 5,000 water balloons were used
  • Local fire department arrived to soak the crowd

‘Camden is turning 10 on July 6th and wants to have an ultimate water balloon fight party with 2,000 balloons and lots of kids.

‘The only problem is Camden has Apraxia of speech and because of the issues with articulation and some impulsiveness he has a really hard time making friends.  He has been in speech therapy since he was 2 yrs old and has made great improvements over the last 8 years but still has a long ways to go.

‘He mainly plays with his older sister and her best friend and one other boy in the neighborhood. This friend is 11 and has recently decided he’s too cool to hang out with a ‘little kid that can’t talk right’. Read more at the Daily Mail UK

Over 300 kids turn up to celebrate friendless boy’s 10th birthday

Camden was born with a condition called Apraxia, which makes it difficult for him to speak – and, consequently, form friendships.

What was supposed to be a small bash turned into a huge celebration at the weekend, complete with a three-tiered birthday cake and around 6,000 water balloons – much to the delight of Camden.

Open invitation brought visitors from near and far.  Read more at the SunUK

Hundreds of people turn up to young boy’s birthday party after ‘Reddit hug’

Sometimes, the internet can combine for the forces of good and the results are a thing of true, heart-warming wonder. That’s what happened when the mum of 10-year-old Camden Eubank feared that no one was going to attend her son’s birthday party, and turned to the internet for help. Camden suffers from a speech delay known as Apraxia, and sometimes struggles to put words together when he’s placed under intense social pressure.  Read more at MetroUK

Hundreds Attend 10-Year-Old’s Birthday Party After Invite Goes Viral (Video)

Camden suffers from a motor disorder called apraxia, which makes it difficult for him to make complete sentences under pressure, and as a result, his parents chose to homeschool him. When he expressed interest in having a huge water balloon fight, his mother reached out to her Facebook friends to try to raise the party’s attendance. Read more at Elite Daily World News

Hundreds turn up to celebrate lonely 10-year-old’s birthday after Facebook invitation goes viral

Camden’s mum described him as the ‘happiest she’s seen him in a long time’ at the party, which was funded by kind donations Read more at Mirror UK

Mum’s Viral Invite To Son’s ‘Ultimate Water Balloon Fight’ Party Pays Off With 300 People Attending

Camden has Apraxia of speech, which makes it difficult for him to talk to other children in order to make friends, and while his mum was sure he’d have plenty of grown-ups in attendance, she wanted to help give Camden the birthday party he deserves.  Read more Huffington Post UK

 300 people show up to 10-year-old’s water balloon fight birthday “It makes any pains you’ve got go away.”

“Camden is turning 10 on July 6th and wants to have an ultimate water balloon fight party with 2,000 balloons and lots of kids.”

She wrote that he has a speech delay, known as Apraxia, and some issues with articulation, making it hard for him to make friends. Read more at YahoonewsCanada

Videos

 

Extra Coverage Videos from reporter Shayne Dwyer from WDBJnews who was one of the first to cover Camden’s party that day!

extra video of me getting blasted by the firetruck at the party. Just watch and you’ll see”

This is a video only extra cut of video of the water balloon fight that we posted”

Apraxia Research Survey

Thank you everyone for your active participation in this survey -we’ve had hundreds of people respond within just 2 days, and the survey is now closed! In fact so many people responded that they thought it was a mistake (verbal apraxia being a “rare disorder” and all) Again thank you so much everyone!

Awesome opportunity to help raise awareness about the need for apraxia research, as well as to help research what ever your child’s rare condition is if not verbal apraxia (which is included in the list for rare disorders)  It is requested that each person that wishes to participate has to be emailed by Cherab directly with Patient-Centered Outcomes Research Institute (PCORI)http://www.pcori.org/ copied on the email so they have a copy of each participant in this survey. As you will see in the letter below however, your participation is anonymous.

If you are interested in participating, which I so hope you are. Please fill out the form below and we will get you the information for the survey which should only take you around 10-15 minutes to complete. We all know there is a tremendous need for apraxia studies, now is the chance to tell those who can make a difference! And again I’m aware there are members here who have other rare disorders, this survey is for you too!!!

Here is some brief information

Dear CHERAB Foundation member,

“Our organization is partnering with the Patient-Centered Outcomes Research Institute (PCORI) and the American Institutes for Research (AIR) to conduct the Caregiver Survey. This is to help us understand your views about medical research and your interest in helping researchers decide what topics are studied. PCORI is an independent, nonprofit organization that was established in 2010 by Congress to fund research that will provide patients, their caregivers, and healthcare providers with the evidence-based information they need to make fully informed decisions. PCORI will use the information from this survey to decide what research to fund and make sure that it addresses topics that are important to you and other caregivers.

The survey is intended for caregivers of patients in the United States who are diagnosed with a rare disease. Caregivers – those family members and friends who assist in or support decisions related to the care for patients with rare conditions – are important stakeholders in patient-centered comparative effectiveness research.

Since we serve people with Verbal Apraxia, we have agreed to assist with this survey by sending you this invitation to participate. Please visit http://cherabfoundation.org//2015/apraxia-research-survey/ and fill in your name and email to get the survey which should take around 15 minutes to complete.

Your participation in this survey is voluntary, and will not affect any future interactions with PCORI. All of your responses are anonymous, meaning we cannot trace the answer back to you. At the end of the survey, you will have an opportunity to provide your email address to receive a $5 dollar electronic gift card for Amazon.com.

Your survey responses will not be connected with your email address.”

Thank you,

Lisa Geng
Cherab Foundation

pcori Genetic Alliance

Late Talker Handout

 

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


NutriiVeda Survey For Autism, Apraxia, TBI, ADHD, Seizures

In addition to collecting the anecdotal reports through our network, we have created a survey to collect feedback from parents, professionals and individuals to help provide functional data that can be shared with researchers as we continue in the Pursuit of Research!  Please take a few moments to document your (or your child’s) journey with NutriiVeda here.  We will be sharing the results as soon as possible!

Preview of ‘Nobody Ever Told Me (or My Mother) That!

I had the honor of previewing a copy of ‘Nobody Ever Told Me (or My Mother) That! – Everything from Bottles and Breathing to Healthy Speech Development’. It will be available in paperback in a few more days – April 1st to come to the rescue for parents, care givers and professionals with easy to follow information, tips, and suggestions about feeding, speech, mouth development and the links between all of the above. Knowledge is power, this is a book you’ll want to check out to better assist the child/children you care for!

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

Upcoming CHE Partnership Call

From the Collaborative on Health and the Environment

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
You are receiving this message because you are subscribed to the CHE National listserv. This message comes to you from the Collaborative on Health and the Environment, online at: www.healthandenvironment.org/.

We encourage sharing of resources and welcome recipients of this email to forward it to others. However we do ask that you forward this message in its entirety, complete with its attribution and this footer.

The Differences Between Apraxia and Aphasia

Reprinted with permission from the Augusta Free Press, article by Chris DeWald

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

Please fill out this questionnaire!

Would you like to help research therapy for Apraxia? Dr. Renai Jones is conducting a study and could use your help. Please download, print, fill out, and send the attached questionnaire to the address at the bottom of the document!

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