Mild 1
Service Delivery Unit Minimum of 15 30 Minutes per Week

Moderate 2
Service Delivery Units Minimum of 31 60 Minutes per Week

Severity of Disorder

Impairment minimally affects the individual’s ability to communicate in school learning and/or other social situations as noted by at least one other familiar listener, such as teacher, parent, sibling, peer.

Impairment interferes with the individual’s ability to communicate in school learning and/or other social situations as noted by at least one other familiar listener.

Articulation/ Phonology

Intelligible over 80% of the time in connected speech.

No more than 2 speech sound errors outside developmental guidelines. Students may be stimulable for error sounds.

Intelligible 50-80% of the time in connected speech.

Substitutions and distortions and some omissions may be present. There is limited stimulability for the error phonemes

Language

The student demonstrates a deficit in receptive, expressive, or pragmatic language as measured by two or more diagnostic procedures/standardized tests. Performance falls from 1 to 1.5 standard deviations below the mean standard score.

The student demonstrates a deficit in receptive, expressive or pragmatic language as measured by two or more diagnostic procedures/standardized tests. Performance falls from 1.5 to 2.5 standard deviations below the mean standard score.

Fluency

2 4% atypical disfluencies within a speech sample of at least 100 words.

No tension to minimal tension.

Rate and/or Prosody

Minimal interference with communication.

5 8% atypical disfluencies within a speech sample of at least 100 words.

Noticeable tension and/or secondary characteristics are present.

Rate and/or Prosody

Limits communication

Voice

Voice difference including hoarseness, nasality, denasality, pitch, or intensity inappropriate for the student’s age is of minimal concern to parent, teacher, student, or physician.

Medical referral may be indicated

Voice difference is of concern to parent, teacher, student, or physician. Voice is not appropriate for age and sex of the student.

Medical referral may be indicated.

Severe 3 Service Delivery Units Minimum of 61 90 Minutes per Week

Profound 5 Service Delivery Units Minimum of 91 + Minutes per Week

Severity of Disorder

Impairment limits the individual’s ability to communicate appropriately and respond in school learning and/or social situations. Environmental and/or student concern is evident and documented.

Impairment prevents the individual from communicating appropriately in school and/or social situations.

Articulation/ Phonology

Intelligible 20 49% of the time in connected speech. Deviations may range from extensive substitutions and many omissions to extensive omissions. A limited number of phoneme classes are evidenced in a speech-language sample. Consonant sequencing is generally lacking.

Augmentative communication systems may be warranted.

Speech is unintelligible without gestures and cues and/or knowledge of the context. Usually there are additional pathological or physiological problems, such as neuro-motor deficits or structural deviations.

Augmentative communication systems may be warranted.

Language

The student demonstrates a deficit in receptive, expressive or pragmatic language as measured by two or more diagnostic procedures/standardized tests (if standardized tests can be administered). Performance is greater than 2.5 standard deviations below the mean standard score.

Augmentative communication systems may be warranted.

The student demonstrates a deficit in receptive, expressive or pragmatic language which prevents appropriate communication in school and/or social situations.

Augmentative communication systems may be warranted.

Fluency

9 12% atypical disfluencies within a speech sample of at least 100 words. Excessive tension and/or secondary characteristics are present.

Rate and/or Prosody

Interferes with communication More than 12% atypical disfluencies within a speech sample of at least 100 words. Excessive tension and/or secondary characteristics are present.

Rate and/or Prosody

Prevents communication.

Voice

Voice difference is of concern to parent, teacher, student or physician. Voice is distinctly abnormal for age and sex of the student.

Medical referral is indicated.

Speech is largely unintelligible due to aphonia or severe hypernasality. Extreme effort is apparent in production of speech.

Medical referral is indicated.Sp

“By the age of 7 years, the student’s phonetic inventory is completed and stabilized. (Hodson, 1991). Adverse impact on the student’s educational performance must be documented. If the collaborative consultation model of intervention is indicated at the meeting, the student receives one additional service delivery unit.”

Source: Illinois State Board of Education (1993). Speech-language impairment: A technical assistance manual Springfield: Author: Reprinted by permission. (permission granted 11/28/2001)

Oral Apraxia is a disorder where the child, who typically is a “late talker” is unable to coordinate and/or initiate movement of their jaw, lips and tongue (articulators) on command.

An Oral Motor Disorder, which could be a different oral motor problem than apraxia (could be from weakness/dysarthria for example) is the second type, in which the child is unable to coordinate and/or initiate movement of normal eating movements (vegetative activities.)

Here are some possible warning signs of the two types of oral motor problems, written by Lisa Geng, the parent of two children who were diagnosed by a neurologist (Trever. DeSouza MD) and a neurodevelopmental pediatrician (Marilyn Agin MD) with two different types of oral motor problems, with help from Cherab’s advisor, Sara R. Johnson, CCC/SLP.

Can your child do the following regularly or on command:

• smile?
• kiss or make a kiss face?
• stick out his/her tongue?
• try to touch his/her tongue to his/her nose?
• make raspberries?
• lick peanut butter off his/her upper, side, or lower lip?
• imitate making a funny face?
• blow out candles or blow bubbles? (a typically-developing ten-month old can do this)
• bite his/her lower lip?
• show vvarious emotions in facial expressions?
• blow his/her nose on command?

(undocumented, off the record sign of apraxia that is reported as a problem by most parents of all aged, even teen apraxic children through the CHERAB group. This aspect of apraxia can also be overcome through strategies/therapies to assist with motor planning. These children have no trouble breathing through their nose or mouth all day long, but when a tissue it brought to their nose and they are told to breath out, they will breath in instead. There are nose horns developed by Sara Johnson CCC SLP which help a child learn to motor plan this activity as well. Breath control on command is essential for verbal speech.)

If your child cannot do all or some of the above, this may be a sign of Oral Apraxia, which is worth looking into with medical and speech professionals.

Or does your child…

• drool excessively?
• bite straws when drinking or put the straw more than 1/4 inch into his/her mouth?
• overstuff his/her mouth when eating?
• have an open mouth posture?
• have a protruding tongue?
• look like he/she is smiling all the time?
• prefer one brand of baby food carrots over another?
• have a limited diet?
• swallow without chewing?
• grind his/her teeth during the day?
• have a history of difficult nursing (or did you “not make enough milk” for your child to nurse)?

If your child does all or some of the above, this may be a sign of Oral Motor problems, which is worth exploring with medical and speech professionals.

If you are seeing any of the above signs, seek out the services of a Speech Language Therapist for an evaluation of these skills. This can be done through your State’s Early Intervention Programs, a free federally funded program for qualified children from birth to three years of age or through your school district’s preschool disabled program, a free program for qualified children between the ages of three to 6 years. You can also contact the American Speech Language-Hearing Association in Rockville, Maryland for a list of certified clinicians in your area. It is very important to have an ACCURATE assessment completed by a skilled clinician. You may also want an evaluation from a developmental pediatrician, or pediatric neurologist to look for signs of low tone (hypotonia).

1. Make a point to set a calm, relaxing tone for the mealtime. Control the lighting, sound and movement in the eating environment.

2. Establish “sitting behaviors”:

Make sure the child is in a comfortable, well-supported seat.

Have small fidget toys or books at the table to entice the child to sit.

Make a placemat out of photos or pictures of favorite items and cover it with clear contact paper to give the child something for visual focus.

Start with 5 minute increments (working up to 15 minutes) to encourage success. But… once the child leaves the table, mealtime is over.

3. Help the child establish regular hunger-satiation cycles by limiting eating to mealtimes and scheduled snacks. Contact your pediatrician to learn about appropriate serving sizes recommended for your child’s age. They are probably smaller than you think.

4. Discontinue all sip-cup use. Discourage your child from walking around with a juice cup in his/her hand. Drinks can by served in flip-top cups with internal straws, juice boxes, or sports bottles with straws on the go. Open cup drinking should be encouraged at all mealtimes.

5. Some children snack (chew) or drink (suck) for organizational, calming and
arousing purposes. Replace the snacks with other positive oral behaviors.

Increase frequency of tooth brushing.

Toothbrush with an electric toothbrush.

Allow oral exploration with hand-held massager.

Oral motor toys (whistles, bubble blowers)

All of us hear the same thing “just a late talker” Which may be the case. However early intervention therapy is harmless -and it may stimulate your child to speak even sooner. If your child begins to speak fluently after two sessions -no more therapy! If your child does have a speech disorder vs a simple delay in speech however -Early Intervention not only provides the child the best chance -it also could help prevent secondary behavioral or self esteem problems due to frustrations from not being understood, or from being teased. And what if your late talker who is “so bright” and passes all developmental milestones on time or early ends up being apraxic? Apraxia, you may think…never heard of it -what are the odds?!

Not every late talker with a speech delay or disorder has apraxia -however apraxia is not rare; many people just do not know the name or symptoms yet. The problem with this is that children with apraxia benefit greatly from early intervention. Apraxia does NOT self-resolve. The prognosis for a child with severe apraxia to one day speak like everyone else is greater for a child who receives a diagnosis and appropriate therapy at 3, than that of a child who first receives a diagnosis and appropriate therapy at 6. So why are some children with apraxia diagnosed after early intervention years?

According to Dr. Diane Paul-Brown, director of clinical issues in speech-language pathology for the American Speech-Language-Hearing Association in Rockville, Maryland, “We now know the earlier the intervention, the better the brain can reorganize.” Today, parents are generally told to look for signs of delay early, even in a baby’s first year, and seek help. No one should assume that a silent 2-year-old is a budding genius; silence may be a sign of hearing loss or a neurological disorder.

The new advice is based in part on studies showing that children with speech impairments are more likely to have reading and social problems later. Working with very young children, with malleable brain connections, may rewire defective connections. From the book Developmental Apraxia of Speech, by Hall, Jordan and Robin, from”Working with Preschoolers Exhibiting DAS (Developmental Apraxia of Speech),” page 174:

“…Lohr (1978) stated that with her population of nonverbal clients with apraxia, ‘children who were younger when we began working with them progressed more rapidly’ (p. 6). Our experience has been that the overall outcome has been best for those children with DAS who were identified as possibly exhibiting DAS and received services as very young children…”

A parent with a non verbal child may search on the internet under the key words “late talker”, “non verbal”, “speech delay” or “delayed speech”, but unless they know the disorder called apraxia, they will not search under “apraxia” on the internet. Even worse, apraxia also goes by a bunch of other names that are used interchangeably, such as “dyspraxia,” “DAS,” “motor planning disorder,” etc. Additionally, the words “neurologically based” can be misleading to parents; most children with apraxia have above average intelligence, and parents may not believe that their non-verbal child who is “SO” intelligent can have a condition that may be neurologically based. In fact, nobody knows for sure where apraxia comes from. Hopefully as awareness is raised, more research will be done to find out more about this frustrating and confusing condition called apraxia.

Of course there are other factors to consider, aside from the age of identification, when making a prognosis of an apraxic child’s future success at communicating verbally. These include the severity of the apraxia, frequency and appropriateness of therapy, attention level of the child, and parental involvement.

According to the analysis of the US Department of Education 2001 statistics by Dr. Mark Geier, while there has been a 4 fold increase in the numbers of children with autism, there has been a 30 fold increase in the numbers of children with speech and language disorders in the past ten years. As alarming as that sounds, we suspect the numbers of children with an undetected underlying speech and language disorder could in fact could be higher. It is hard to know the exact numbers of how many children have speech and language impairments for two main reasons:

1. Speech and language disorders are frequently attributed as part of another diagnosis.
2. Speech and language disorders are often undiagnosed.

The problem in not recognizing if a child has a specific speech and language disorder either alone, or co-existing with another diagnosis, is that the child may or may not receive the appropriate therapies to address the communication impairment to give the child the best prognosis. Most appreciate that there are specific appropriate therapies for autism, dyslexia, sensory integration dysfunction, central auditory processing disorder, and ADHD, and that they can vary. Yet most don’t address the fact that there are also specific appropriate therapies for speech and language disorders as well, which are also unique. In the case of severe speech disorders such as apraxia, it is critical to do these specific therapies frequently and intensively.

If disorders of speech and language go undiagnosed and/or untreated, or they continue to be attributed to another diagnosis, we are not addressing the full problem and not providing children with undetected underlying speech and language disorders the best chance at being a successful communicator in the future.

As neurodevelopmental pediatrician Dr. Agin states, ” We know that many children who have neurologic problems do not have just one problem, but multiple overlapping signs and symptoms. A child can have a speech and language impairment, sensory issues, ADHD, PDD….”

So keeping that in mind, why then is the importance of addressing specific speech and language disorders with appropriate therapies ignored or downplayed in so many conditions?

Through CHERAB’s outreach many report that in addition to the speech and language disorder their child has also been diagnosed as having another condition, or two, or three… Some children do have more than one condition, and some have been misdiagnosed. When you read some of the symptoms of other diagnoses it’s no wonder. Perhaps we need to stop listing speech and language as part of another diagnosis and address it for what it is -a disorder that is on the rise to epidemic proportions.

Here are examples of how speech and language disorders are attributed to other conditions. All have specific therapies, however I’ll only touch on them for example. As you read the following -think of your “late talker child” and how closely he falls into the following descriptions of:

Autism

“Autism is a term that refers to a collection of neurologically-based developmental disorders in which individuals have impairments in social interaction and communication skills” … “People with autism can make progress if they receive appropriate, individual intervention. Pre-school children who receive intensive, individualized, behavioral interventions show good progress. In addition, limited pharmacological interventions are available to treat symptoms associated with autism.” http://www.cdc.gov/nip/vacsafe/concerns/autism/autism-facts.htm

…could they also suggest speech and occupational therapy? At least speech therapy? Was something left out here or is it me?

CAPD

“Children with CAPD may demonstrate difficulties in speech, language, and/or learning” http://www.ldonline.org/ld_indepth/process_deficit/capd_perc.html

Dyslexia

The British Dyslexia Association describes a sign of dyslexia as “Later than expected speech development ” and states “There is a large body of research linking speech and language difficulties in early childhood to later literacy problems.” And according to the Society for Neuroscience “Many scientists have identified brain regions related to dyslexia with high-tech imaging techniques that photograph the brain in action. The tools have helped them link the disability to speech sound processing, vision and language brain systems” Therapy? According to Dr. Harold Levinson, a world-renowned psychiatrist and neurologist “some dyslexics will have severe reading, spelling and speech difficulties while others will have major problems with only math, memory and concentration. Yet all suffer from an inner-ear-determined dysfunction”

…What is and is speech therapy good for “inner-ear-determined dysfunction” for dyslexics who exhibit speech problems?

Sensory Integration Dysfunction

In the book The Out of Sync Child (which I love!) the author Carol Kranowitz “gives excellent examples of typical indicators that can signal a parent (or grandparent or caregiver) that a sensory integration dysfunction may be present. A few of the examples of typical symptoms in children include oversensitivity to touch, movement, sights, or sounds; an activity level that is unusually high or unusually low; coordination problems; delays in speech, language, motor skills”

And the list goes on…

Since I don’t have time or room to go into every disorder, impairment, disability and condition that also credits “speech delay or difficulty” as part of the diagnosis, let’s just study what we found above.

Motor planning problems, speech delays and difficulties, the signs of the various conditions above, are signs of a speech or language disorder as well as discussed in “The Late Talker” What about ADHD someone may ask. (OK so one of you did which is why I built this new page) “Are there links between ADHD and speech problems?”

Since I list ADHD in my top ten reasons to celebrate the new book, ‘The Late Talker’, let’s concentrate on ADHD.

Did you know in some samples those with a diagnosis of ADHD have “undiagnosed” speech and language disorders as high as 40% and 50% of the time?

As a mom, I have personal experience ( twice ) with late talkers. One of my late talker boys also has ADHD.

Due to a traumatic birth, my oldest son Dakota was in therapy overseen by a neurologist from three weeks old. Dakota also was a late talker, (which we all considered the least of his problems in comparison to his eating and breathing problems) Dakota has been diagnosed by neurologists and developmental pediatricians as having either ADHD, ADD, or CAPD (central auditory processing disorder) numerous times as well (and ADHD “suspected” and pointed out to me by each of his teachers from preschool to second grade… as well as most baby sitters, strangers in the supermarket, and one neurologist who left the exam room for a second to get a pen and came back to find Dakota knocked his entire wall shelf down that I was trying to put back up!)

Even though Dakota has been diagnosed with ADD, due to educational and therapeutic strategies, and without any medication, Dakota is a brilliant gifted third grade student who receives straight A’s academically. Dakota is mainstreamed, and classified for his ADHD, and he receives pull out speech therapy two times a week through the school district. Dakota, like Tanner, has benefited from the right formula of Omega 3 and Omega 6 oils. (You can read about that here) Dakota is a true success story and a testament to early intervention. Quite a few doctors have called Dakota the “miracle child” at this point. Perhaps it was part miracle, part therapy, part early intervention, and part brain stimulation. Either way, with or without ADD, Dakota is “normal” now, actually better than normal, and for that we couldn’t be happier, no matter how it happened.

- Lisa Geng, President
The Cherab Foundation

ADHD and Communication Disorders

Here are some snips from articles about the relationships between ADHD and speech and language development.

Comorbidity in ADHD and Associated Outcomes
by Dennis P. Cantwell, M.D.

“…Communication disorders describe developmental speech and/or language disorders. These children have elevated rates of ADHD. It is also clear that children referred for psychiatric problems and given a diagnosis of ADHD have undiagnosed speech and language disorders in a number of cases, as high as 40% and 50% in some samples. The nature of this relationship is not well understood. It may be that the speech and language disorders lead to attentional problems in some particular way or that they are both due to some common underlying factor, such as some type of central nervous system (CNS)
dysfunction.

The long-term outcome of children with speech and language disorders is fairly good for the disorders themselves. However, these children are highly likely to develop learning disorders as a residual outcome of their speech and language disorders. Thus, the presence of
communication disorders is likely to lead in ADHD children, as it does in non-ADHD children, to the development of academic performance problems due to specific learning disabilities in the language- related areas. This probability must be taken into account in the
design of treatment plans to alter long-term negative outcome…”

Impulsivity, Inattention and Language
Sam Goldstein, Ph.D.

“Toddlers and preschoolers at risk to receive a diagnosis of ADHD are often impulsive and inattentive. These children also demonstrate a higher incidence of problems with language development. In some studies as many as 50% to 70% of young children with hyperactive and impulsive behavior were experiencing problems in understanding and expressing ideas through language. These children also demonstrated a high rate of learning disability when they entered school. It is unclear whether their temperament contributes to delayed language or delayed language contributes to their difficulty temperamentally.

Before they learn to speak and begin to attach verbal labels to things, infants must touch, feel and taste as a means of gaining information about the world. Once they learn to use language effectively, words replace touch. Impulsive toddlers, however, often have difficulty making this transition. Typically they continue to need to touch and feel things, possibly as a means of gaining sensory input from the world. This problem may lead to difficulty
understanding personal space in older children with ADHD.

In long-term studies, Dr. Walter Mischel and colleagues found a most interesting relationship between a young child’s ability to use language skills while waiting for rewards and later success as a teenager or young adult….

ADHD: Speech and Language
American Speech Hearing Association

“Inattention, hyperactivity, and impulsivity have their effects on speech and language…some children with ADHD also have learning disabilities that affect their speech and language. Evaluation of each child’s individual speech and language pattern is critical to developing an appropriate treatment plan…”

ADHD And Communication Skills
Eileen Bailey Director of ADDHelpline

“There are a number of ADD symptoms that can become barriers to effective communication (see a list here) …The ADD brain, always active, yet lacking in certain chemicals can not always retrieve the accurate data it needs. The right descriptive word may be filed somewhere in their brain, but not readily accessible. We have all “known” something that we can’t remember and say that it is “on the tip of our tongue.” Somewhere in our brain we have the knowledge, but at the moment we do not have the ability to locate it.

So it is with an ADD brain. With thoughts constantly moving quickly around and distractions taking attention away, it can be hard to locate the piece of information within the vast storage of the brain. Therefore, the correct words or phrases do not come. The ADD person becomes frustrated because the know what they want to convey, they can feel what they want to convey, and sometimes they think they have conveyed that very thought. But somewhere, it has been misconstrued, or not understood. Those that do not understand ADD may feel lost in the conversation, get annoyed or just look at you with amusement or non-comprehension.

Whatever happens, the communication can break down and cause frustration on both ends…”

Acknowledgment from The Late Talker book:

“”…Thanks to my two boys, Dakota and Tanner. Your communication delays were a motivating wake-up call to do something to help both of you and others. Your success from early intervention is an inspiration, providing hope for all late talkers. Without you there would not have been a Cherab Foundation and the greater awareness of speech challenges that has helped so many others, and this book would not have been written.”

Like most parents, we thought our son Tanner was going to be a late talker, like my Aunt Betty who didn’t speak at all until after the age of 3. My husband and I had no reason to believe otherwise. Speech problems did not run in our family. Tanner’s pediatrician at that time wasn’t concerned at all about him being non-verbal at 2 years – 4 months since Tanner, who was obviously very bright (genius runs in the family) passed all the other developmental milestones on time or early and, “they were more concerned with receptive ability.” Tanner’s receptive ability far exceeded his expressive ability (One of the many early signs of apraxia) Tanner was babbling and starting to say a few words up to about a year old, when he went through 2 weeks of high fevers. After that, he lost all the words except “Ma,” and that’s also when he started looking so serious most of the time. But even though people noticed it, it was not a cause for alarm. Besides, our first born son, Tanner’s older brother, was the one that concerned the doctors at that time since he had torn neck muscles, crushed facial nerves, and eating and breathing difficulties from a traumatic delivery. Our first son was the one in therapy overseen by a neurologist, and Tanner, our second, was the “normal” healthy baby and child.

Still, we were mildly anxious, even though we too thought he was going to “just start talking” when he was ready. After pushing for a Speech and Hearing Evaluation, Tanner went through five months of speech therapy, 2 to 3 times a week, that we paid out of pocket for (We believed insurance would cover this-ha! Silly us!) After five months of speech therapy, other than his only word, “Ma” Tanner merely learned how to say 8 simple sounds with cueing (“t”, “sh”, “f”, “b”, etc). But even though he could make the “ch” sound, and the “oo” sound, he could not put them together to say “choo”. For the most part, Tanner said nothing…

Finally, at 2 years – 8 months, and still non-verbal, Tanner was diagnosed with apraxia by his first Speech Therapist. We had no idea what that meant, or what apraxia was -so it meant nothing to me. I asked “Well he’ll still talk, right” expecting an “Oh sure” answer, but instead when I heard “well…….it depends” I felt like someone pulled the rug out from under me, shocked to say the least -especially since Tanner wasn’t even three years old yet -the age everyone said he would “just start talking” That was the beginning of staying up to the wee hours of the morning on the Internet desperately searching and searching online for how to help my baby.

…We decided that this diagnosis of apraxia finally explained why Tanner didn’t move his face much, he typically would just stare at you without any smiles – we called him the “serious baby”. Tanner couldn’t even lick his own lips! If Tanner had peanut butter or chocolate on his lip he couldn’t even lift his tongue to try to lick it off. Tanner would use his fingers to push the food on his lips into his mouth. Also, Tanner couldn’t blow the candles out on his second birthday cake, in fact, he couldn’t blow bubbles until almost 3 years old even though he tried and tried. Nobody, including Tanner’s regular pediatrician, or his first Speech and Language Pathologist, knew these were all strong warning signs of Oral Apraxia-which can occur with Verbal Apraxia, and can be diagnosed as young as 18 months. It wasn’t until Tanner was diagnosed by a neurodevelopmental pediatrician Marilyn Agin MD at almost three years old that we realized that our Tanner -who all thought was the cute, serious, normal, cherub looking baby that was just a late talker -had many warning signs of a serious speech impairment – signs nobody else picked up or noticed. As Dr. Agin states, “There are professionals who are knowledgeable, you just have to find them.”

Dr. Marilyn Agin is the Medical Director for Early Intervention in New York, as well as having a private practice for pediatric and developmental medicine in New York City. Dr. Agin is extremely knowledgeable about apraxia, and frequently lectures to the medical community about what apraxia is, and isn’t. Dr. Agin, who is now one of the chief officers and the medical director of Cherab Foundation , gave permission for me to use her phone number, (212) 274-9180. When Dr. Agin saw Tanner for the first time at 3 years old she shook her head and said, “I could have told you a year ago this child had severe oral apraxia, he doesn’t know where his tongue is in his mouth!” She diagnosed Tanner with apraxia after a brief examination where it was never seen by Tanner’s pediatrician, and it took months for even a speech therapist to see it! Tanner could have received appropriate therapy a year earlier if we only knew, if the professionals we trusted only knew.

On a positive note, in addition to the experts including Dr. Agin, as well as Tanner’s private Speech Therapist, Michelle Ortega M.S.CCC-SLP, that helped us personally to understand apraxia, we found the most incredible support on the internet. On the Internet we found other great resource sites as well, and some important facts that helped us to help Tanner, like the importance of “appropriate” therapy. We found out that not many knew it was a good idea to take a child like Tanner to a Developmental Pediatrician or Pediatric Neurologist for more insight, which we did. At that time we found at that Tanner also had mild hypotonia and sensory integration challenges which we also never knew-but it answered more questions as to why Tanner did certain things. We also found out that Tanner was qualified for Early Intervention through the state just 2 months prior to his third birthday, which allowed for about a month of Early Intervention by the time all the paperwork and all was done. The month before Tanner’s third birthday we began supplementing Tanner with Essential Fatty Acids. This same month, Tanner started seeing Lauren Zimet CCC-SLP, a speech & language pathologist (SLP) through Children’s Specialized Hospital’s Early Intervention Program that was certified in PROMPT, knowledgeable about apraxia, and oral motor therapy. Tanner, who was diagnosed “severe to profound” oral and verbal apraxia by a number of medical and speech professionals after the original diagnosis, and went from non-verbal to 23 words (including “choo”) in just one month once we got him on the right track! This was when we were first on the track to learning about EFAs and Tanner’s amazing story was written up in a book called The LCP Solution by Malcolm Nicholl and Dr. Jacqueline Stordy. You can read this excerpt from the book here.

It was great to be able to “talk” online to others, but as a novice parent, I really wanted to talk in person to other parents who could relate. I secretly believed our son had a somewhat rare condition, since there were only 8 support groups in the world for it at that time, and just 2, 000 people on the largest list-serve for apraxia on the Internet in the whole world! (and that number included professionals from the medical, educational and commercial fields as well!) At that time, I started trying to research apraxia at NORD! The closest support group for us was about eight hours away. This is when Lauren Zimet, Tanner’s SLP encouraged me to start a support group. After a bumpy start, I am so happy that I did.

I truly believe that our son Tanner, who just turned 4, went from a diagnosis of “severe – profound” at 3 years, 2 months, to an outcome prognosis of “excellent,” because of the information I learned from the internet while Tanner was still young. This information included how to find the right “experts” that could work with Tanner.

Everyone that listens to Tanner talk now, cannot believe he is the same quiet child, who had a 23 simple word vocabulary at 3 years old. (“ma” and “da” we counted as two of his words) You can listen to Tanner at 3 1/2, and at 4 years old.

Tanner, who just turned 4, is doing amazing in therapy both private and through his out of district preschool, The Summit Speech School for the hearing impaired in New Providence, NJ where he was one of the first hearing apraxic children in the school that thrived there. (He is STARTING to talk like a “normal” child of his age) He is up to 3, 4, and occasionally 5 word sentences now. He’s understood most of the time, even by strangers! (It’s frustrating for him when he’s not.)

We all know with the rate Tanner is improving, that one-day he will be able to talk just like you and me! And nobody could be happier about talking than Tanner himself, who learned how to say “doughnut” and “rides” (correctly!) a few months ago, and hasn’t stopped asking for either since!

I’ve been told that experience makes you the best teacher, so even though I am a parent and not an expert, here is information I believe will make YOU more knowledgeable in understanding your child and his or her language development! Remember, follow you gut, and if you think there may be something wrong, ask your child’s pediatrician for a referral to a speech and hearing evaluation for your child. You should also seek a qualified Speech and Language Pathologist to do an evaluation through your State’s (free) Early Intervention System (Below 3 years old), your school district’s (free) “Pre-school Disabled Program” (after 3), or privately through ASHA. Second opinions are recommended for whatever the diagnosis may be.

Most important -DO NOT ALLOW ANYONE TO TEST YOUR VERBALLY IMPAIRED CHILD’S RECEPTIVE ABILITY or IQ USING VERBAL BASED TESTS. Far too many communication impaired children have already fallen through the cracks due to this practice.

Tanner’s seven year old update and why I stress the above!

Last year Tanner at six was mainstreamed in a regular public school kindergarten class and was one of the top children in his class according to his teacher. Now at seven for first grade Tanner is being schooled at an accelerated academics school where he is receiving straight A’s so far! He is reading books like ‘Danny and the Dinosaur’ easily and is able to write long complex sentences. He is also a whiz at math, and loves science, Spanish and gym class. Tanner is a child who is quick to raise his hand in class in spite of his speech impairment. A child who plays really well with others and to date is not teased by his peers. A child who in addition to school and therapy is a cub scout, on soccer and on the chess club. A child who is a whiz at computer games and loves to swim and skateboard. Listen to Tanner at seven years old

So why all the concern about verbal based receptive or IQ tests for communication impaired children?

The Summit Speech School that Tanner attended for hearing impaired children until he turned six through “out of district placement” as written in his IEP knew which nonverbal receptive/cognitive testing was most appropriate for Tanner. However the public school where we lived at the time, who also evaluated Tanner when it was time for him to transition to kindergarten, used inappropriate verbal based receptive and IQ testing. The use of this inappropriate testing found that Tanner was ‘not capable of being mainstreamed in a regular kindergarten class’. They found it appropriate based on their inappropriate and discriminatory verbal based cognitive testing that Tanner to be placed in a self contained learning disabled kindergarten class. They stated that Tanner would “not make it” in a mainstream kindergarten class. Well what could possibly make anyone say that about the child above who was doing so well in all areas?

I happened to walk into the verbal based testing for the last page of the one verbal based cognitive test Tanner was given when he just turned six. This was done by our public school for kindergarten, not by The Summit Speech School. Here are three that I watched Tanner get “wrong” On the page was a black and white picture of an ironing board, a fire extinguisher (could they have thought of a harder word for an apraxic child to say perhaps?) and a file cabinet.

Tanner called an ironing board a “table” (I don’t use an ironing board -and it does look like a table. doesn’t matter) -wrong

Tanner called a fire extinguisher a “fireman” The examiner “no Tanner it’s not a fireman but it’s something a fireman may use” (I’m thinking “oh yeah like he doesn’t know that! Like he could even say extinguisher!”) -wrong

Tanner stopped verbally trying on the third -he pointed to the file cabinet in the room and then to the one on the paper to show he knew what it was The examiner -”yes Tanner we know it’s found in schools but what is it called” Tanner started pointing back and forth faster and checked with a smile and a tilt of his head to see if this examiner understood him. Nope -Poor Tanner -Still wrong -file cabinet -didn’t know he needed to know those two words, or would have bought one for him to play with so we could practice “file cabinet” with our preschool speech impaired child instead of other two word combos like “milk please”

Together with Claire Kanter of The Summit Speech School we advocated, quite hard if I may add, to have Tanner placed in the mainstream based on the Summit Speech School as well as other private nonverbal assessments. The public school was quite insistent on the validity of their findings, they again used verbal based receptive and cognitive tests. While it’s no surprise that a speech disabled child such as Tanner scored low average on a verbal based assessment, Tanner’s nonverbal cognitive/receptive testing found him to be average to above average in skills. Tanner showed no signs of delays that he would not “make it” in a mainstream kindergarten class. As I said back then -”and if we don’t mainstream Tanner in kindergarten, then what grade do you suggest we throw him into the mainstream? First? Third? I mean since when is kindergarten class rocket science?!”

We shouldn’t have had to fight against the inappropriate verbal based receptive and cognitive testing given to our child who has a history of a severe communication impairment, all professionals should have known not to use verbal based testing on a child like Tanner with a history of a severe speech impairment.

As a straight A student who is in an accelerated academics first grade class now, needless to say Tanner proved those that used cognitive/receptive verbal based testing on him wrong, and those that used cognitive/receptive nonverbal testing on him correct. Tanner, who (I’ll repeat this since you can’t say it too much when it comes to verbal disabled children) maintains straight A’s in an accelerated academics class, will to this day score below average on a verbal based receptive or cognitive test. It was due to another attempt at verbal based testing for Tanner’s receptive ability that I was motivated to pursue stopping this discriminatory action against these verbally disabled children.

Based on the above, you now see why it’s no wonder that a child like Melanie ended up like she did.

It’s obvious to all, even lay people, that you should not use visual based tests to test the receptive or cognitive abilities of a visually impaired or blind child, nor would anyone dream of using an auditory based test to test the receptive or cognitive abilities of a hearing impaired or deaf child…so why do professionals from schools and hospitals across the US and around the world up till now not see the flaw of the use of a verbal based test to test the receptive or cognitive abilities of a verbally impaired or late talker child? Lack of knowledge could be an answer, but again even a lay person would find it obvious to be wrong.

I am aware of the dramatic rise in communication impaired children, and that most do not have the knowledge to know how to advocate, and I’m also aware of what happens to these children when they are misclassification due to inappropriate testing.

I am the President of two non-profits for communication challenges. Children’s Apraxia Network was the first that I co-founded with two other parents who were active for only about 5 months. I was fortunate for the help of wonderful professionals and parents who stepped in. Children’s Apraxia Network is a non-profit group that provides out reach to parents and professionals, and for over three years had monthly informative meetings that were accessible to the entire NJ/TriState area. All involved with Children’s Apraxia Network work to help people understand what apraxia is, in order to help the apraxic children we care for, and others, overcome it.

Our newer nonprofit, Cherab Foundation was founded by my husband Glenn and myself, and Cheryl Bennett Johnson MA SLS/Educational Consultant, and we now work with an incredible group of parents and with an amazing professional board. We started the Cherab Foundation to embrace a broader spectrum of communication challenges, have more involvement from medical professionals, raise awareness about early intervention, and to provide global vs. regional outreach.

Most children with apraxia CAN talk just like you and me, if they are given a chance. We hope you will join us in spreading the words! Verbal Apraxia, Dyspraxia, Lingual Apraxia, Oral Motor Planning Disorder, Oral Apraxia, Apraxia of Speech, Global Apraxia, Verbal Dypraxia, Developmental Articulatory Dyspraxia, or the one we heard from Tanner’s neurologist, “phonological motor processing disorder.” (Which if your child can say that one, he probably doesn’t have apraxia!) And Remember: Knowledge is powerful in helping us to help our late talking or apraxic children.

If your child is a late talker, it does NOT mean that he or she has apraxia or any other disorder of speech. However, every child with verbal apraxia or another speech impairment you don’t just outgrow is a late talker, so it’s a good idea to at least have an idea what the disorders of speech like apraxia are. Don’t you agree?

Written By Tanner’s Mom (Lisa Geng)

Interview of Tanner Geng from Kid’s Enabled May 15, 2011 “From Struggles with Apraxia to Honors English Tanner Geng and His Success Story“

Dr. Paula Tallal, an advisor for Cherab, is the Board of Governor’s Professor of Neuroscience, Co-Director of the CMBN at Rutgers University, and Co-Founder of Scientific Learning Corp (SCIL), Director, Scientific Learning Corp. She shared the following with our group and answered some of our members’ questions.

Phonics approaches focus on helping a person understand that words can be broken down into smaller units, or sounds, and it is these sounds that need to be attached to letters and then combined again to pronounce a word. The best approach to helping a person understand this (called phonological awareness) can be done by simply playing a few simple word games.

For example, practice recognizing the sound (not the letter name) at the beginning of a word, and then think of other words that begin with that same sound. (The problem with teaching the letter names rather than the sounds in words is that the letter NAME may not actually occur in a word that includes that letter. For example, the letter name for B does occur in the word “before,” but not in the word “balloon,” even though both begin with the same letter. However, both begin with the letter sound “bah” as do all other words that include this letter. So it is much better to teach a person the letter sounds first rather than the letter name and then to play word games that help them find a particular sound in spoken words.)

After working on initial letter sounds, see if the person can say whether that sound is inside or at the end of spoken words. Do not introduce the actual written letter until this skill is well mastered.

Once the letter sounds can be recognized within words, it is usually easy to learn which letter(s) goes with each sound. Start with consonants and do vowels after consonants are mastered.

Another game is to say what a word would sound like without the first sound. For example, ask “How would you say the word STOP without the first SOUND (S)?” Play this game orally; do not use letters or writing. The answer is that the word STOP without the first sound (s) is the word TOP.

You can also move on to final sounds once the person can master the initial sound deletion task. For example : “How do you say the word PLATE without the last sound (T)?” Answer: PLAY.

If someone has trouble doing these games you can start with compound words to give them the idea. Example: “How would you say the word COWBOY without the COW?” Answer: BOY.

Another good word game is rhyming. Begin by pronouncing a word like HAT and ask the person to say a word that rhymes with HAT, such as CAT, MAT, SAT, etc. Think of words that have lots of rhymes. Play this game orally at first. Next you can show the person how rhymes work by making up a card that just has the rhyme part on it, like AT and then thinking up new first SOUNDS that, when attached to AT, will make up a word. Then, using a series of cards with single letters on them, find the letter that goes with that first sound and put it in front of the AT, showing how sounds/letters can be combined to make new words.

All of these games are designed to get the idea across that words can be broken up into sounds, and that it is these sounds that must be attached to letters in order to learn how to read.

Whole language does not teach these phonological awareness skills. Although many people will just intuit them without explicit instruction, many do not and will then struggle to learn to read and will alway just rely on memorized letter patterns and the words they represent, but will not be able to figure out new words.

To learn more about how the brain learns language and reading skills, see the Brain Connection website. Also check out the Fast ForWord training programs that train phonological and other language skills necessary for learning to read and become a good reader. Read more about Fast ForWord.

Scientific Learning Corporation has developed a computerized assessment of basic reading skills. It is called Reading Edge and can be administered at home by a parent or at school by a teacher. Find out more about Reading Edge as well as Scientific Learning’s family of very successful language and reading training programs that have been based on over 30 years of neuroscience research

The Cherab Foundation gratefully acknowledges permission to print the following, cited by Jennifer Hecker, a parent advocate for her apraxic son, Reed.

“The type of treatment appeared to influence whether patients improved. More patients improved and improvement was greater in Group A, individual stimulus-response treatment, than in Group B, group treatment. These result imply the way to treat AOS (Apraxia Of Speech) is to treat is aggressively by direct manipulation and not by general group discussion. This is consistent with what has been recommended (Rosenbek, 1978).

The type of treatment appeared to influence whether improvement occurred or not. Four of the five patients who did not improve received group treatment with no direct manipulation of their motor speech deficit.” Apraxia of Speech: Physiology, Acoustics, Linguistics, Management. Rosenbek et al. 1984

“The frequency of professional speech assistance is critical in the habilitation of children with developmental apraxia of speech. This disability call for all-out attention and deserve serious instruction to the limits of the child’s attention and motivation. When normal children begin their formal education, they do not go to school two or three times a week for just a half-hour at a time, even in kindergarten. Thus, I do no expect to provide special education for children with developmental apraxia of speech on a cursory basis, for it may be the most important part of the entire education.” Current Therapy of Communication Disorders, Dysarthria and Apraxia. William H. Perkins 1984

“They use the term developmental apraxia to describe a disorder that is not confined to the phonologic and motoric aspects of speech production, but includes difficulty in selection and sequencing of syntactic and lexical units during utterance productions. Most clinicians agree that planning the appropriate treatment approach and methods is crucial to the efficacy of intervention. A variety of factors can facilitate treatment of DAS. DAS is often characterized as being resistant to traditional methods of treatment. Group therapy decreases the potential of responses per session for each child and therefore, the motor practice needed by children with apraxia and dysarthria.” Treatment of Motor Speech Disorders in Children by Edythe Strand in “Seminars of Speech and Language” Vol. 16, No. 2. May 1995

“Early stages of treatment need to be carried out on a one-to-one basis for it is only in this way that the patient can learn to develop his own particular strengths and adopt compensatory measures for weaknesses.” Disorders of Articulation, Aspects of Dysarthria and Verbal Apraxia. Margaret Edwards 1984″These children do not seem to make good progress with the usual approaches to clinical treatment of articulation problems. Carefully structures programs that combine muscle movement, speech sound production, and sometimes even work on grammar seem to get better results.” “Developmental Verbal Dyspraxia” on Healthtouch Online, ASHA website

“Children must be seen one-on-one, at least in the early stages of treatment.” Nancy Kaufman, author of the Kaufman Speech Praxis Test and expert on Apraxia, on The Kaufman Children’s Center for Speech and Language Disorders website .

“However, many of the theories, principles, and hierarchies described for adult apraxics are potentially helpful to the clinician designing motor-programming remedial program for an individual child. (We stress the word individual since the program development for children with DAS must meet the individual, and often unique, needs of each child.)”" Intensive services are needed for the child with DAS. Children with DAS are reported to make slow progress in the remediation of their speech problems. They seem to require a great deal of professional service, typically done on an individual basis. Therefore, clinicians working with DAS must accommodate this need and schedule as much intervention time with the child as the child and/or his/her schedule can allow. The definition “intensive” varies from clinician to clinician and from work setting to work setting. Rosenbek (1985), when discussing therapy with adult apraxics, defines the word as meaning that the patient and the clinician should have daily sessions: Macaluso Haynes (1978), Haynes (1985), and Blakeley (1983) also advocate daily remediation sessions.” Also, “our experience has been that the overall outcome has been best for those children with DAS who were identified as possibly exhibiting DAS and received services as very young children.” Developmental Apraxia of Speech, Theory and Clinical Practice. Penelope Hall et al. 1994

“We recommend therapy as intensively and as often as possible. Five short sessions (e.g., 30 minutes) a week is better than two 90 minute sessions. Regression will occur if the therapy is discontinued for a long-time (e.g. over the summer). Most of the therapy (2-3/week) must be provided individually. If group therapy is provided, it will not help unless the other children in the group have the same diagnoses and are at the same level phonologically.” Shelley Velleman, authority and published author on Apraxia, on her website (velleman.html). “Our clinic has had tremendous success with the half-hour format, we find these session to be very intense, packed with therapy, and have little
down time. The earlier and more intensive the intervention, the more successful the therapy. Group therapy can be effective for articulation disorders and some phonological processing disorder, but children with Apraxia really need intensive individual therapy.” Nancy Lucker-Lazerson, MA, CCC-SLP, and Clinic Coordinator for the Scottish Rite Clinic for Childhood Language Disorders San Diego, on the Apraxia Kids website.

“A few major principles in particular have direct relevance to the treatment of motor speech disorders. The most obvious, yet surprisingly often disregarded, is that of repetitive practice. Pairing of auditory and visual stimuli is included in most approaches, and intensive, frequent, and systematic practice toward habituation of a particular movement pattern is suggested instead of teaching isolated phonemes. It is important to
consider the treatment needs of each child and attempt to find creative solutions that
> allow frequent individual treatment for children that will most benefit.”
Childhood Motor Speech Disorders Edythe Strand

“Given the controlled conditions stipulated in the studies…, it is clear that speech dyspraxia can respond to therapy. All approaches involved an intensive pattern of therapy. Even if not seen daily by a therapist, patients carried out daily practice.” Acquired Speech Dyspraxia, Disorders of Communication: The Science of Intervention. Margaret M. Leahy 1989

“Consistent and frequent therapy sessions are recommended. The intensity and duration of each session will depend on the child. At least three sessions per week are recommended for the child to make consistent progress.” Easy Does it for Apraxia-Preschool, Materials Book. Robin Strode and Catherine Chamberlain

“In stark contrast, the children with apraxia of speech whose parent stated that three quarters of their child’s speech could be understood following treatment, required 151 individual sessions (ranging from 144-168). In other words, the children with apraxia of speech required 81% more individual treatment sessions than the children with severe phonological disorders in order to achieve a similar function outcome.” Functional treatment outcomes for young children with motor-speech disorders by Thomas Campbell in Clinical Management of Motor Speech Disorders A.J. Caruso and E.A. Strand 1999.

(In addition to the information on this page, a great page on 1:1 therapy is at Apraxia-Kids)

1:1 Therapy Question Sent To Children’s Apraxia Network:

Advice From our nonprofit’s SLS/MA/ EDUCATIONAL CONSULTANT, Cheryl Bennett-Johnson

It is interesting to note that when a child is receiving Early Intervention services in the home, therapy is 1:1. It is also interesting to note that children as young as 6 months of age have received 1:1 services. Every apraxic child is different, with a diagnosis of severe apraxia, the child would benefit from 1:1 therapy. What data is the school SLP (Speech Language Pathologist) presenting indicating that the age of 5 is too young for 1:1 services?

Remember when a request for services is not given as requested, the denying party must give a written rationale as to why. The IEP (Individualized Education Program) is an individualized Education Program. How will the SLP (Speech & Language Pathologist) address the severe oral motor needs of the child within the group setting? What are the short and long term goals and objectives that are specific to the nature of this child’s severe apraxia? Does the SLP plan to devote x amount of minutes providing 1:1 therapy to your child within the group setting? Your child’s disability of apraxia affects his involvement and progress in the general curriculum and access to nonacademic and extra curricular activities due to the fact that he is not able to communicate appropriately to school personnel when needed and communicate effectively through speech and/or writing to class- mates and teachers. The severity of his disability warrants 1:1 speech therapy intervention. Your child’s disability of apraxia of speech affects his ability to engage in age relevant behaviors that typical students of the same age would be expected to be performing or would have achieved {IDEA-Code of Federal Regulations (C.F.R.): 34 C.F R.300.347 (a)(1)(i) Statue 20 United State Code (U.S.C.) 1414 (d)(1)(A)(i)(1).

I am requesting that the parent draft a letter to the Dr. of the Child Study Team including the information listed above. Indicate that you are not in agreement with the type /amount/duration of the speech therapy services that will be provided to your child. State that you are seeking 1:1 therapy services for your child because… Send the letter certified receipt return requested. Send a copy to the SLP, the District Superintendent of Schools, and Board of Education President. Severe Apraxia requires the parent to advocate for 1:1 services in the area of speech therapy.

I just received an email from Cathleen Buchanan, PhD, who is the Research Coordinator to Dr. Michael Chez, Pediatric Neurologist. Dr. Chez has been very involved with research in autism and epilepsy, aphasia and auto immunity. They are both “happy to learn of the interest” in our group -which has its focus on communication disorders like apraxia and “know that this holds much promise for your list-serve members…..”

This is just the first week I’ve started giving Tanner the carnosine at 200 mg a day which is one capsule. Since then I’ve increased Tanner to 2 capsules a day (400 mg). I posted earlier how Glenn commented on how Tanner’s speech improved; I just put Tanner on the phone with Jeannie and Tanner told her what he told me -that he went to the zoo on a bus and that him and his best friend Tyree were playing and had a little fight and that Tyree punched him in the stomach and then he punched Tyree in the stomach and then Tyree scratched his face but it doesn’t really hurt and they are still friends. (!!!!)

Ok -not that I’m not upset that my five year old has a scratch on his cheek, and that they are punching each other in the stomach and he says nobody noticed, but that is overshadowed by…he was able to express all those complex thoughts without stopping and saying “I forget mommy” like he sometimes does if it’s too much to say.

So I’m very excited about putting the carnosine together with the ProEFA from just what I’ve seen so far even though it’s probably too soon to tell. I’m just wondering if I can go over to the local health food store and buy carnosine instead since the bottle I bought online at carn-aware.com only has 60 capsules in it at 200 mg each? Is there any difference -do we need to worry about purity like we do with fish oil?

I looked up carnosine online and there are some studies going on in the UK with it for anti-aging, so I may want to try it too! Here is the link http://www.med4u.co.uk/BM_HT_completherpy_supp.htm and I did read this same anti-aging info about it elsewhere too. I also read at med4U “As mentioned earlier, this is a new supplement and our experience in using it is limited. However, we do not expect any side effects or dangerous long-term problems, as this is a naturally- occurring product, found in our muscles and brain. If you do not like taking tablets, you may want to get your extra supplies of carnosine from red meat or chicken .”

Here is the info from my last post -including the info sent to me from Dr. Chez again!:

“.. the good news about carnosine is that it’s easy to give. It doesn’t have a taste or smell really so you just pull the capsule apart and then add it to water. For some reason, Tanner seems to mind it more than the fish oil however because the powder doesn’t mix into the water very well. I only give him one capsule a day; fish oil is to help him talk better -I tell him this will help him to read better.”

~~~~~~~~~~~~~~~~~~~~~

Double-Blind, Placebo-Controlled Study of L-Carnosine Supplementation in Children with Autistic Spectrum Disorders.
Michael G. Chez, Lake Bluff, IL, United States, Cathleen P. Buchanan, Lake Bluff, IL, United States, Jamie L. Komen, Lake Bluff, IL, United States, Marina Becker, Lake Bluff, IL, United States.

Objective : L-Carnosine is an amino acid dipeptide that may enhance frontal lobe function. We therefore sought to investigate whether L-Carnosine supplementation for children with Autistic Spectrum Disorders (ASD) results in observable, objective changes in language and/or behavior in contrast to placebo.

Design/Methods : Thirty-one children (21 M, mean age= 7.45; range = 3.2-12.5 yrs ) meeting inclusion criteria were enrolled in an 8 week blinded trial of either 400 mg BID powdered L-Carnosine or placebo. Children were assessed at a pediatric neurology clinic with the Childhood Autism Rating Scale (CARS), the Gilliam Autism Rating Scale (GARS), the Expressive and Receptive One-Word Picture Vocabulary tests (E/ROWPVT), and biweekly parental Clinical Global Impression of Change (CGI), at baseline and 8 week endpoint. Results: Children who were on placebo (n=17) did not show statistically significant changes on any of the outcome measures.

After 8 weeks on L-Carnosine, children (n=14) showed statistically significant improvements on the GARS total score, GARS Behavior, Socialization, and Communication subscales, and the ROWPVT (all p’s<.05). EOWPVT and CARS showed trends in improvements, which were supported by parental CGI.

Conclusions : Oral supplementation with L-Carnosine resulted in demonstrable improvements in autistic behaviors as well as increases in language comprehension that reached statistical significance.

Although the mechanism of action of the amino acid is not well understood, it is believed that it acts to modulate neurotransmission and affect metal ion transfer of zinc and copper in the entorhinal cortex. This may enhance neurological function or act in a neuroprotective fashion.

What is Carnosine?

The supplement that you are interested in learning more about contains 200mg powdered carnosine, as well as powdered Vitamin E (25 IU) and powdered Zinc (2.5 mg). The exact doseage that is correct for your child should be established by your doctor in coordination with Dr. Michael Chez , who pioneered the use of this supplement in children with developmental delays. L-carnosine, or “carnosine” is an amino acid dipeptide made up of histidine and alanine. The naturally-occuring amino acid is found within the human body, a by-product of proteins digested within the body. The deep frontal part of the brain (entorhinal cortex) is believed to be a site where carnosine tends to accumulate. It may interact with zinc in that area, as well as having effects on GABA, a brain neurotransmitter, which by a complex chemical reaction forms homo-carnosine.

What Studies Have Been Done with Carnosine?

Rat and animal studies have been done with carnosine looking at “neuroprotection.” These investigations aimed to examine protective action since carnosine may be protective of muscle and nerve function. There have been no studies that have shown any evidence of toxicity or teratogenicity in animals where carnosine has been studied. Few scientifically-validated human studies have been conducted, however, and most of the information one finds about carnosine’s claims are of the quality found on the internet. Claims have been made for generic carnosine/carnosine formulations aiding in combatting a range of maladies from Alzheimer’s to body building.

Why Carnosine, then?

Recent MRI studies by Petroff and colleagues (2001) examining levels of brain chemistry showed a relationship between homo-carnosine and GABA in temporal lobe and generalized myoclonic epilepsies. These authors described homo-carnosine levels that may correlate with seizure control even when GABA response is defective in human studies. Dr. Chez was intrigued by the results of this study, and thus began a study in June, 2001 that aimed to test if supplementing carnosine orally could enhance seizure protection in children who were already on anticonvulsants and who had recurrent seizures despite being on standard drug therapy. He hypothesized that the addition of carnosine could decrease seizure frequency and so began an open-label study of carnosine which he acquired via an industrial chemical company.

The Open-Label Study

A total of 75 children, who had “failed” multiple antiepileptic medications in an effort to stop their seizures (including steroids and the Ketogenic diet) with histories of partial or generalized epilepsy entered the open-label study. The majority had fronto- temporal lobe seizures, or generalized epilepsy. Approximately 25% had EEGs to directly compare before and after starting the carnosine. Many patients had reductions in seizure frequency, but without EEG correlation. Two sisters with hypsarrythmia/Lennox- Gastaut variant both showed dramatic improvements in EEG amplitude, spike frequency, and background activity. In three other patients with primary or secondary generalized spike and wave patterns or Lennox-Gastaut type patterns, EEG amplitude and spike frequency improved with carnosine in dosages of 800-2,000 mg. per day. Dosage was titrated upward depending upon bodyweight. No side effects were reported.

Unexpectedly, parental diaries showed a pattern of comments related to gains in cognitive domains including language, alertness, energy levels, and even gross motor ability. Dr. Chez was motivated by such reports in addition to comments from other professionals that worked simultaneoulsy with the children (e.g., speech therapists) who, unaware that children were on the new supplement, spontaneoulsy stated that individual children were showing incremental gains not previously seen. Expressive language was described as more fluent, eye contact more frequent, and interest in the environment was more prominent. Dr. Chez thought that this supplement could be of benefit to children with autism or PDD and so began to give it to children with such diagnoses in an open-label trial. Indeed, parents reported benefits in their children after as few as 2 weeks, in the areas of socialization, expressive language, alertness level, energy level, adaptation to change, and curiously, gross motor planning.

The Double-Blind Study

Because of the remarkable cognitive improvements in language, speech production and school performance as well as social alertness, Dr. Chez felt it important to study the effect of the supplement in children with Autistic Spectrum Disorders. Children were included in this study if they had histories of abnormal EEG, and had previously responded to cognitive-enhancing dementia medications (as part of a controlled study at the office) or to anti-convulsants. A double-blind placebo controlled study with carnosine was begun. Children were randomly placed on either active carnosine or placebo.

Expressive and receptive language measures, two autism rating scales, and parent rating analog scales were administered at the start and completion of the study. Results of this study indicated clinically meaningful changes in many aspects of autistic features, and also showed that the carnosine supplement improved children’s expressive and receptive language significantly. This is the only dietary supplement to date studied in a double-blind fashion in autism.

Who Benefits and What are the Side Effects?

The majority of children with either epilepsy or autism treated in open label studies by Dr. Chez benefitted from carnosine supplementation. Dr. Chez estimates that approximately 10% of children who have been on the carnosine supplement have had reports of no improvement. A very small percentage (less than 5% of children with epilepsy or autistic spectrum disorders) have shown increased physical hyperactivity or verbal hyperactivity, but we are unable to ascertain if these reports are directly related to the carnosine supplement. No sleep disturbances were reported as a result of carnosine therapy even in dosages up to 3,000 mg. a day. No abdominal side effects, skin rashes, or any changes in anticonvulsant blood levels, liver functions or hematological studies. No patients had any urinary changes or bowel habit changes from the carnosine.

Many children on the autistic spectrum were reported to increase their range of food choices with an improved range of appetite. Responses have been seen in generalized epilepsies, focal seizure disorders, autism, PDD, and head injury to date. Because of its effect on entorhinal cortex, improvements in Alzheimer’s disease or other frontal lobe encephalopathy may be possible. Any syndrome that involves apraxia or expressive language delay may benefit from this.

Concurrent studies are currently being run or planned in areas of attention disorder, Tourette’s syndrome, and various learning disability syndromes of the nonverbal type.

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Two recommended sources for “pure Carnosine”

Carn-Aware The product that Dr. Chez used in the above studies. I called them and they were very helpful in answering my questions because when I first started Tanner I didn’t know anyone else with an apraxic child using this. This is their temporary ordering site, upon publishing of the Carn-aware research -it says the new site should be ready.

Beyond a Century Another company recommended to me that sells pure carnosine. They were also very nice and helpful over the phone. Some buy from here because it’s cheaper. I use both carn-aware and the pure carnosine powder from here too. Let me know if you see any difference between the two brands!

Common speech disorders:

There are several speech disorders affecting children. They include articulation problems, phonological processing disorder, verbal apraxia, oral motor apraxia and swallowing difficulties (which run the gammit from oral motor coordination problems to the inability to control food within the mouth resulting in gagging and choking), lisping (/th/ substituted for an /s/ sound in speech), stuttering, and voice problems (hoarseness, nodules on the vocal chords). These do not include cleft palate nasal speech and/or deaf speech, which are the result of serious and obvious physical disabilities.

Definition of apraxia:

Apraxia is a neurological disorder in which the inability to coordinate or initiate muscle movement prevents the action requested when the muscles are adequate for these motions. It was originally used for stroke patients (geriatric population) but has recently (past 20 years – 1980′s) been applied to children exhibiting coordination/ motor sequencing difficulties of speech sounds. Verbal apraxia is a neurological disorder where children are unable to coordinate and/or initiate movement of their articulators (jaw, lips and tongue) for the production of speech sounds. Oral motor apraxia is a disorder where the coordination of the articulators is hampered for non-speech (raspberries, blowing whistles) or vegetative (eating, chewing, swallowing) skills. Both coordination/initiation disorders are neurologically based and therefore may be present in conjunction with other disorders, i.e., ADHD, Autism, Downs Syndrome, Hearing Impairment, etc. Both disorders present with a range of severity: mild to severe.

How prevalent among speech disorders is apraxia?

In my practice I see 21 apraxic children weekly for therapy (total 40/week). I would guess that 4/15 children have a speech delay or disorder and 2 have some degree of apraxia, either oral motor and/or verbal.

How many kids per year are diagnosed?

Over 42 million Americans have speech disorders and 80% or 85% of the referrals to the Early Intervention Programs across the country are for speech delays (statistics from the American Speech, Hearing and Language Association, ASHA, the organization that certifies Speech Pathologists and Audiologists and sets the standards for these professions for training, research and practice.)

How do you tell the difference between a late talker and speech disorder (apraxia)?

Children with verbal apraxia present with “flags,” or criteria/symptoms which eliminate the label of late talker, a developmental disorder which will right itself without intensive, specific, one-on-one intervention. Apraxic children have never demonstrated early sound play. They tend to be quiet babies, often described as “serious” children. They do not, nor did they, babble(the noises babies classically make ie “gaga, googoo”). Apraxic children understand everything but, in contrast, cannot demonstrate their understanding with a verbal response. Most times, their imitative skills are good. When given a model, they can approximate the presented word, but they cannot produce the sound/word/sentence volitionally without this model. The number of movements required for sequencing to produce a message greatly affects the outcome. Their ability to repeat these series of movements in sequence for a particular word or sentence is significantly hindered. Their inconsistency for this task is the single most important criteria for a differential diagnosis for Apraxia of Speech. Children with verbal apraxia tend to be unable to find classic approximations for common words, or familiar phrases; “dit dow” for “sit down” or “tuck” for “truck” are beyond their capabilities. The prosody (melody) of speech, i.e., inflection, stress and pitch, are usually affected also in verbal apraxia.

How is a child diagnosed?

The best way for a child to be diagnosed is an evaluation by both a pediatric neurologist and an experienced speech pathologist. Standard tests for articulation delays are available but an experienced Neurologist uses both sound error tests as well as language tests for determination.

How do parents typically react when their child is diagnosed with apraxia?

What does it mean for the child and family? The words neurologically based disorder send up a flag for them. Most do not initially understand the complexity of the problem. It is only when they go on the Internet to the various sources (Cherab, Children’s Apraxia Network, ASHA) that they begin to understand the seriousness of the diagnosis. The parents go through a grief-process; because they now know the problem won’t right itself. Dreams and expectations need to be put on hold and a process of finding the “fighting spirit” must be brought to the forefront. Children need their parents to be advocates for them. Misunderstanding about their abilities, mislabeling of their condition and the misunderstanding of their speech makes these children more dependent upon their parents as translators, teachers and defenders.

What is appropriate therapy?

Research has shown that an intensive (3- 5 times/weekly), individualized speech therapy program should be started as soon as the child is diagnosed. Therefore, the earlier the child is identified the better the predicted outcome. Without this type of intervention, the child’s communication skills may improve as he grows older, but his speech will be filled with errors making him unintelligible to an unpracticed listener, set apart from his peers and significantly affect his self-image. Therapy does not provide a “quick fix”. Most apraxic children will be in therapy for over 2 years and often longer. However, all but the most severe apraxic children, if given the appropriate therapy, will eventually be competent oral communicators.

How important is it to get a diagnosis verses just continuing with regular speech therapy with no definitive diagnosis?

Traditional therapy tends to approach mis-articulation with tasks that at first drill sound production in isolation until mastery. Then the therapist designs tasks with the error sound in specific single syllable words in the initial or final or medial position until mastery. Following the mastery of this skill the words are put into short phrases, structured sentences and finally into activities which foster the carry-over into casual conversation. For children with verbal apraxia, therapy focuses on the motor movements in sequence for the production of a meaningful word. The faster the child can put these sounds into words (approximations) for functional communication the better these units will be practiced in daily activities. The experienced therapist will not necessarily follow the typical hierarchy of sound development (Vowels, PBMHW, TDN, KG, SH, CH, LSZ, J, TH) but will use the sounds the child can produce as a jumping off point for functional vocabulary and communication. Oral motor and imitation skills will be of significant concentration so as to warm-up the muscles to do the movement sequence. Focus on the vowel sounds preceding and following the consonant of practice will also be closely monitored to ensure the best possible production. Then intensive repetition of the word, words and phrases will be practiced to aid the muscles and neurological pathways in remembering the sequence of movement for this production. Tactile cueing (the touching of the face, and/or lips), visual models (mirror work), and kinesthetic cues will also be employed to give the child the most information the therapist can for the production of the sound, word or phrase. This is a much more complex therapy routine than the traditional techniques.

What can parents do to help?

Parents are an integral member of the therapy team. They are the best motivators, the best translators and the most invested partner. The experienced therapists would be well advised to make them the models during the treatment sessions. Use their list of their child’s wants, needs and likes as a loose structure for vocabulary expansion in therapy. And listen to their concerns, and elations as the child progresses. Each child is different but in general children build a core vocabulary of nouns, verbs, adjectives and prepositions. They produce each word singly and then in pairs. As the child becomes more flexible and comfortable with the vocabulary, he/she expands on the word order and length of word strings producing kernel sentences. From there, children group single sentences to short paragraphs and stories of events they remember, see or make up.