I just received an email from a parent who has a child that is about 18 months old, is nonverbal, and was recently diagnosed with oral apraxia. She stated that she was a “blubbering idiot” because she cried, and I sent her this response, which may help some of you as well.

I remember that I went to a huge fair for “special needs children” that was a really wonderful and fun event for all the children, even the “normal” brothers and sisters that were there. I remember having a great time and then, all of a sudden it hit me that my son was invited there, like many of these other children, because he was “special needs.” All of a sudden it hit me, not that I didn’t know before, but up until then those words never meant that much, I guess.

I stood there, holding a hamburger for Dakota and a hotdog for Tanner, and I looked at Tanner who was smiling… and I started to tear. My baby is “special needs.” I knew I could have lost it, so I focused on something else and acted like I had something in my eye.

We didn’t ask for this when we decided to be parents; this is an added surprise. It doesn’t mean that it’s bad, it’s just not what most people go through.

Believe me I know what it’s like to go from “he’s just a late talker, but man this kid is SO smart, just look at him!” and believing he is completely normal, to finding out a day later that…

He is not talking because has a severe neurologically based speech disorder which is called all different names which can mean different things to different people since the medical and speech professionals and the world can’t agree on just one name so it’s called apraxia or dyspraxia or oral or verbal apraxia or oral motor disorder or motor planning disorder or phonological motor planning disorder but no matter which name you call it most of the world is still ignorant to it but if I don’t find out what he needs for appropriate therapy through insurance and school when it comes to speech and occupational and physical therapy as well as appropriate ways to educate him he may never learn to talk, and in addition he always had “soft” neurological signs like hypotonia and sensory integration that up until yesterday I didn’t even know existed and nobody not even his pediatrician ever knew he had and it took a neurologist and a developmental pediatrician to point these “soft” neurological signs out to us.

Sure there are warning signs of oral apraxia, which can be spotted long before verbal apraxia. Problem is that most people don’t know what they are. Below are a few of the signs of oral apraxia that our son Tanner displayed. Not every child with verbal apraxia has oral apraxia as well, but it is not uncommon. Outside of the obvious, the reason we believe that we need to include this page in this website is because parents have read about oral apraxia at this website and then, based upon the “signs” of oral apraxia they learned about, they took their 2 year old child for an evaluation, where the child was diagnosed with oral apraxia by a professional.

We have been told that besides this website, there is nothing else on the internet with Parent Friendly Signs Of Oral Apraxia.

To give you an idea what is out there now, here are two examples: This first one is a terribly complex example: a textbook definition of oral apraxia (link no longer working.) This second one goes to the opposite extreme of being an easy to understand definition of oral apraxia, but provides VERY limited information to say the least! If you find anything new you believe is parent friendly, please let me know.

If there is not information out there that can be understood by people outside the field of speech, then there should be, for important reasons. 1) Experts state that oral apraxia can be diagnosed as early as 18 months, which is over a year younger than a positive diagnosis of verbal apraxia is usually received. 2) For early intervention, “the sooner the better” for apraxia. Awareness should be raised about oral apraxia while we continue to raise awareness about verbal apraxia. Is oral apraxia a red flag to verbal apraxia? According to Marilyn Agin MD and many other experts, almost every child with oral apraxia has verbal apraxia. So by catching these easy to spot warning signs early, we give our apraxic children the best possible chance. Overcoming oral apraxia gives our children a smile, overcoming verbal apraxia gives our children a voice. Below is a quote from “A letter to parents” which contains some of Tanner’s early warning signs of oral apraxia.

“…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 Pediatrician, or his first Speech and Language Pathologist, knew these were all strong warning signs of Oral Apraxia, which can occur with Verbal Apraxia. There are professionals who are knowledgeable, you just have to find them.”

When Dr. Marilyn Agin, Medical Director for Early Intervention in New York, 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. The apraxia was never seen by Tanner’s pediatrician, and it took months for even a speech therapist to diagnose Tanner with apraxia! Tanner could have received appropriate therapy a year earlier if we had only known.”

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.

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

Story Idea

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

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

Contact: Lisa Geng

Phone: 772. 335. 5135

E-mail: lisa@cherab.org

For Immediate Release

Non profit group speaks up for children

who live in a world of silence

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

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

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

In their book Agin and Geng provide:

• A review of the developmental milestones and what to do if expectations are not met.

• An explanation of the various speech and language disorders, and recommendations on when and how to seek the right kind of professional evaluation.

• An exploration of the appropriate therapies a child should receive from speech-language pathologists (SLPs), and how to support their efforts.

• Exercises to do at home with a child.

• Tips for easing the inevitable frustration a late talking child experiences—as well as advice to parents on coping with their own frustrations.

• An explanation of parents’ rights and how to navigate the school system and insurance maze on the child’s behalf.

• Stories of other parents who have struggled with a child’s speech development problems.

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

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“

2. Recognize the child’s strengths, not just his or her needs.

3. Start on teaching the child some signs to use in the classroom for things he or she needs to communicate immediately (ex It’s mine!) This would be beneficial to the other students as well, and will help to head off any behavior or peer interaction problems…. Also, you could use the PECS system or look into other augmentative communication for him to help build expressive language capability – longer and more complex sentences, etc

4. If the child has a private SLP, work collaboratively with him or her by e-mail, or phone, so that everyone that works with the child is on the same page. For example: what target sounds to practice during the day, repetitively.

5. Stop making the child with apraxia say incorrect approximations.

6. Do not put an apraxic child on the spot for speaking

7. Increase the apraxic child’s ‘free time’ on the computer programs and introduce him to more age appropriate games and even ones to challenge him. A 3-year-old who has no apparent cognitive or fine motor problems is likely to enjoy some of the kids’ software, and he can control what it does without having to make his wishes understood by someone else.

8. Have a daily communication book that records what the child did at school or home. Anyone who cares for, or teaches the child with apraxia can write in this book. Be specific about the activities you do with the child during the day. Include photos, etc.

9. Don’t hold the rest of his education back to the level of his speech. Work around it as best you can – ask him to pick the green one instead of telling you what color something is, to rearrange pictures to retell you the story, etc.

10. Work one on one with the child as much as possible. Repetition is always important for a child with apraxia.

Written By Lisa Geng as posted to the Cherab Foundation grouplist

Other than not talking yet -you can look for any neuro “soft signs” even before the trip to the neurodevelopmental doctor (developmental pediatrician or pediatric neurologist) If your child has any of the following signs-don’t panic -all of them in almost all cases can be overcome -and the earlier the intervention the better as always.

Without neurological soft signs -it’s harder to diagnose a nonverbal two year old – which doesn’t mean you can’t start appropriate therapy just in case if apraxia is suspected -can’t hurt and will probably help no matter what the reason. Even a two year old with “just” a simple delay in speech can be mentally stimulated to talk sooner while having fun with some early intervention speech therapy that may look lots like play to the untrained eye. A big question is did he ever have sounds that he lost -did he ever regress?

A neurodevelopmental medical exam will look at a number of things in your son outside of communication skills, or receptive and expressive language -including physical development and motor skills, thinking and learning cognitive development etc.

Soft signs in apraxic children are typically mild -but in most cases there -most of us just didn’t know what they were because up till Cherab nobody pointed them out. I try to raise awareness because if your child has any of the following -as a parent you will know once pointed out-and so will the neuro MD you bring your child to.

When you run a large support group -you tend to see what is happening in a group -so support groups are excellent for really getting to the facts and the “norm” -and I’ll get to the EFA question in that regard too. I try to put the neuro soft signs in a way that everyone will understand -and these soft signs are all based on my son Tanner -who I and everyone including his first pediatric group all thought was a normal baby other than he was just a late talker.

This same child showed all the strong warning signs -we just didn’t know -however -all the soft signs were picked up right away by all the neurodevelopmental MD’s Tanner has seen once I insisted on taking him (his regular pediatrician wanted to wait till three) -as well as by the PTs, OTs and SLPs too. I could now kick myself that I didn’t see them then -but how would I know? That’s why I want to let all of you know -to prevent it from ever happening to another.

With the following information that I learned from personal experience the hard way costing valuable early intervention time while Tanner’s brain was the most malleable – the many children like him could be receiving therapy younger and have a greater chance for success.

Here are a few quick parent friendly signs of oral apraxia:

If you put peanut butter anywhere on his lips can he lick it off or does he use his fingers? Did he blow out the candles on his birthday cake when he turned two? Can he imitate funny faces? If you take his picture and say “smile” does he smile?

Here are some quick parent friendly signs of mild hypotonia:

A child with hypotonia will feel heavier than a child of the same weight without hypotonia (kind of like the difference between picking up your child when he’s fast asleep vs. awake) Hypotonia can be anywhere in the body. Does your child appear to tire faster than other kids his age walking in the mall etc.? Will you and your wife not dream of taking him anywhere without the stroller because you know if you don’t bring the stroller you will be stuck carrying him because if you don’t pick him up he will sit on the floor crying with his arms in the air for you to pick him up again? And since he’s nonverbal -you will get looks from people passing by, or perhaps even comments -that your child is acting spoiled. When you pick him off the floor -it’s not as easy as it looks for you -or others that try! Most will say “wow he’s solid!” when picking him up. “Solid” is the word used by almost everyone to describe your child when people pick him up come to think of it. His body may look small and light -and many times both look like a cherub, and feel a bit like a marshmallow -rounded and soft. He may sit in the “W” position. If a child has severe hypotonia -he may look a bit like a rag doll (those are the children however that are spotted early however) -gravity just pulls them down. For a school age child -look for the child who can’t sit at the desk long before leaning down on it. The child who when waiting on line will either lean or sit down. The child (or adult) with rounded shoulders who is always being told “stand up straight!” or “sit up!” etc.

Here are some quick parent friendly signs of sensory integration dysfunction:

This is tough because it can affect any of the senses -touch, sight, hearing, motion, etc. So in a nutshell -Your child will seem to be bothered (or even in pain) by something that others aren’t and will not be bothered by something most are if that makes sense.

Here are some of my son’s signs that boy do I wish I knew this is what he had when he was screaming and people were looking at me like “what are you doing to that poor child”

Your child may insist on a certain color cup each time -and will throw a fit if it’s any other. My son for would carry a small cap from a pen or some other small strange object around for hours -and if you tried to open his clutched hand – he would freak out -even if
you thought he was asleep and tried to take the pen cap away so he wouldn’t choke on it while he was sleeping -he would wake up and freak out if he wasn’t 100% asleep yet. He wouldn’t cry for shots – but would say “oww” and cringe if you patted his head or tickled his
arm. When Tanner was a baby (after the fevers and regression) his screams when I brought him to public places like the store would sound like high pitched extreme pain screams and he would stiffen his body -his eyes would bulge out -and he would do this just once
in a while (Thank God) but when he did -he would cry till he fell asleep in a sweat -with nobody being able to figure out what was wrong (my Aunt has her PhD in nursing and my sister is a professional nanny -nobody had a clue) Just strange stuff that seemed quirky. DSI can also be the child that throws a tantrum like he’s in pain -while you have no clue what he’s crying about. Why DSI happens to a nonverbal child who is too young to let us know is a cruel joke -so it’s important for us to know if this is what your child has. The Out of Sync Child is one of the books most of us buy when our child is diagnosed with any multi faceted neurologically based communication disorder like apraxia.

Here are some quick parent friendly signs of motor planning problems in the body:
Just like with speech -your child may be able to do something once and then appear not to remember how to do it again. His actions look forced or planned -he’s slower because you can see he’s thinking before each movement. His development is a bit off in that he can do many things advanced -but for some reason can’t seem to do certain simple things that a much younger child even should be able to do. Again -just doesn’t make sense.

Then you have to know if movement problems are from weakness (hypotonia) or motor planning (apraxia/dyspraxia) -just like with speech. Again -it could be a bit of both -and again -both are neurologically based.
Update 2003 -Not just autism -according to Dr. Geier, there is a much higher 30% rise in speech disorders in our children in the past ten years.

“The 2001 U.S. Department of Education statistics showed in children born in 1983 there were a total of 7,801 cases of speech or language impairment. Among children born in 1994, this number had risen to 211,984 cases (an approximately 30-fold increase)”

Mark R Geier MD PhD who compiled the stats above, is vocal in helping raise awareness to the 30% dramatic rise in children in the US with speech disorders in just the past few years. Outside of his recent papers, there is virtually no awareness to the rise in speech disorders. In speaking with Dr. Geier, he told me that the rise in autism was small in comparison to the rise in the numbers of children with speech disorders.

Due to lack of awareness -too many of our late talker children with multi faceted communication impairments, that are not autistic, are labeled PDD, or PDD NOS.

What does multi faced communication impairment mean? Read above -whether you want to call it apraxia or not -it’s children that are late talkers who are not “just starting to talk” like we all pray they will -and in most cases -they are children that also have one or more of the neurological “soft signs” listed above. Apraxia and autism two different examples of multi-faceted communication impairments. There may be some aspects that overlap or co-exist. It’s more common to find apraxia in an autistic or PDD child than it is to find autism or PDD in an apraxic child. You need to treat the symptoms and not the labels however.

“Apraxia” is the strange name diagnosis that has been the best kept secret for years -and it’s probably far more prevalent than autism. Try doing a search on the (American Academy of Pediatrics) AAP website for apraxia. I did one in February 2003 and I came up with “No documents matched the query ”

How can you have a pediatric condition rising in what appears to be epidemic proportions in some areas (like NJ where there is an apraxic child on almost every block) and yet complete and total silence?

Autism is on the rise – so is apraxia -with and mostly without autism. Just like sensory integration dysfunction or mild hypotonia -both which could be found in most apraxic children -apraxia co-exists in a large amount of conditions, syndromes, disorders and impairments, including and outside of autism and PDD…and it also stands alone as the child who is as one mother of a four year old just said to me “so normal I could smack him”…except he can’t talk. (other than “ma” “da” and 4 other “words”) Some late talkers may have hard signs of neurological problems such as myelin delays. Due to the apparent “pocket areas of more kids with apraxia -(for example more children with apraxia in the suburbs around NYC than in NYC even though the parents in the suburbs see the same MDs in NYC) As an inventor -I suspected there is some type of environmental damage that is affecting our children’s myelin. I came to this conclusion based on the fact that almost all the children in our group once on the right formula of Omega 3 Omega 6 EFAs started to talk within one to three weeks of given just a few drops of fish oil a day -which sounds crazy -but it worked. I came up with the myelin/EFA therapy based on the fact that EFAs have very strong remylenating properties (and OK so I watched the movie Lorenzo’s Oil)

I then presented my theory on why I believe that our children have some type of subtle myelin delays and why EFAs are helping our children’s speech, focus, behavior/mood and movement to PhDs, MDs and the Cherab grouplist starting in 2001. Due to one of my postings I was told -I was called into UNDNJ hospital by the hospital attorney Fred Kipperman Esq. in 2001 to do a presentation about my theory to a panel of neurodevelopmental MD’s (including pediatric neurologist Xue Ming MD PhD) on why I believe that most of the late talkers today do have some type of myelin delay whether it shows up in the MRI’s or not. Apparently they had the same idea for autistic children -and did find that even though myelin delays don’t show up on the MRIs in all cases -they do quite often “show up in the lab” Read a recent front page article about the groundbreaking work UMDNJ is doing here. It makes me feel good to know that EFAs are now taken seriously by some of the top neurodevelopmental MDs in the world- I just wish they would acknowledge this for more than autism. It would be one thing if they didn’t know.

So back to the soft signs…

If you want an accurate diagnosis for your child -please do not supplement your late talker with any EFAs before a neurodevelopmental exam. Children with signs of apraxia or autism, PDD or even certain syndromes after the “right” omega 3-6 formula of EFAs are no longer presenting with the symptoms -leading parents are professionals to conclude that either their child was repeatedly misdiagnosed -or if you look at the group -almost 100% of the children in our group show the same positive changes in the same one to three weeks once supplemented. And the even better news is that the positive surges in most cases do not stop. EFAs appear to help the brain “rewire” somehow. Perhaps soon we will know how.

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.

I am not an SLP, an OT, or a PhD. I am not a medical professional of any kind. I have never received any medical training or education. What I am is Mom to Quinn and Emma, and I wear this title with more pride than any I could possibly have received through years of intense training. My kids, are quite simply my greatest accomplishment, and I live now to see them achieve rather than to reach any further accomplishments of my own. Funny how perspectives on life change isn’t it?

I know my kids more intimately than anyone else in my life. I can tell what’s going on with them from an expression on their face, a body position, or a catch in their voices. I am in tune to them due to my emotional connection in a way that no clinical training or education could possibly duplicate. I am without a doubt, an expert on my children…. Therefore, going forward, may I please be referred to by title as Lindsay Wheaton, PhD(MOM)? Perhaps the people I have dealt with in the past who were trying to help my son Quinn would have taken me more seriously when I provided my input. After all… I am the expert in the field of “Quinn studies (with a double major in Emma studies!)” right?

To give you a taste of what I’m talking about, I’ve actually had professionals say straight out to me the following:

“Humor me…. He needs it”

This applied to a visual schedule as the individual felt since he was placed on the autism spectrum that he had difficulty with change to a daily routine. When I explained that I wanted to focus on another area of difficulty other than this because not only did he not have a problem with a change in routine, but in fact craved a shake up of things as he bored easily, I got this response.

“Apraxia? No… his lack of speech is just a characteristic of his autism”

This was offensive and contrary to everything I had learned on so many levels that I don’t have room to comment fully so won’t bother. I did however, comment to the individual who said it, alas, was not taken seriously.

“he could suffer from Anxiety Disorder or Obsessive Compulsive Disorder”

Brought on by Quinn constantly picking up a car and saying “caaa” when asked a question. I knew very well that Quinn couldn’t verbally answer due to the motor speech difficulty, and so was trying to communicate socially with the individual by delivering the only word he had that was intelligible at the time. He still does this to me…. If I ask him a question he’s having difficulty with, he changes the subject, however, so does my husband when I ask him a question he doesn’t want to deal with. “Buying time” could very well be a genetically predispositioned trait in the male side of our family…but I think not.

“Quinn has compliance issues and follows his own agenda”.

Ummm. Okay – true from your perspective, but just because he is bored with your standardized test and doesn’t want to do it anymore after he’s already sat patiently while you took history from me for an hour and a half doesn’t mean that not following your agenda is necessarily abnormal.

Can I please have my title now?

I’ve had good and bad scenarios in the past three years where I’ve been both dismissed as a mere parent, and where I’ve been embraced for my specific knowledge. Don’t get me wrong – I’ve got a lot of wonderful things to say about a lot of professionals that have come in and out of our lives and without them, Quinn wouldn’t be the success story he is today. Perhaps this makes the well meaning ones who dismissed me stand out more as a result.

I hope this article comes off more as a plea than a rant, as I am not attempting to disparage any of the professionals who have by way of their unquestionable expertise tried to help my son. I don’t feel anyone had any other agenda, and felt they were sincere in their perspective and in no way malicious. I just want to provide everyone with another perspective or interpretation to examine: What if we all worked as a team of experts to help the kids, where parent expertise was included and not discounted?

We’ve seen teams of experts, although for the most part on an individual basis. Expert A would refer to Expert B, who would refer to….well, you get the picture right? I think our most successful and most productive assessments or therapy situations happened when we actually had present at the same time, more than one expert putting their heads together and working as a team. The assessment that resulted in removing Quinn’s PDD-NOS label in June of 2001, was attended by a multi disciplinary team made up of representatives from Speech Language Pathology, Occupational Therapy, Developmental Psychology, and of course, my husband and I. Our private speech therapy consisted of a team effort as well, which was extremely successful. Either my husband or I attended therapy sessions with Quinn, and we took what we learned and applied it to every day as a form of home therapy. We should be accountable as experts as well – we need to be involved in the work and can’t just dump our kids on the professionals and say “fix them!” With that title, we must accept the responsibility!

Its amazing to me that we as parents know so much on subjects we may never have taken interest in prior to finding out they impacted our child. I can’t count the amount of books, articles, websites, studies, etc. I have devoured on the subject of motor speech disorders, autism spectrum disorders, treatment methods, and anything remotely associated with the subject. I’ve quizzed the experts to clarify issues I didn’t understand. I’m passionate on pursuing the knowledge because it directly impacts my son and his achievements – my whole life purpose after all! This is obviously more than just a passing hobby for our family. Can we at least be considered graduate students of a self study university on the subject?

I guess my point in all this is that we as parents value the opinion of professionals. We acknowledge their training, their educational experience, their clinical expertise. We need them and trust them and know they sincerely want to help, and have the unquestionable expertise to do so. Is it so crazy to ask that they do the same for us in the field of our expertise? Is it insane to welcome us aboard as part of the team, and be treated as such and no less? We want to play and could very well be the secret weapon to success – after all, if our goal is the same, which it is, combining forces would simply make us stronger. Let’s up our odds for the kids emerging as the winners shall we?

*Lindsay is a co-founder and active member of Canada’s Apraxia Support Group, ECHO – the Expressive Communication Help Organization.