A Letter To Parents Who Have A Child That Is A Late Talker First Written 7/4/00

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.

From Struggles with Apraxia to Honors; Tanner Geng’s Success

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“