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

Various baby pictures of Tanner "Cherub." When he does smile, he lights up the room!

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.  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, passed all the other developmental milestones on time 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!  

...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, and can be diagnosed as young as 18 months.  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) 274-9180When 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 we could take Tanner to a Developmental Pediatrician and a Neurologist for more insight, which we did.  At that time we found at that Tanner also had 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 (also learned online on the "list" at Apraxia-Kids).  This same month, Tanner started seeing Lauren Zimet, 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, went from non-verbal to 23 words (including "choo") in just one month!  

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, 500 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, (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.

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 monthly informative meetings that are 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 new nonprofit, CHERAB Foundation was founded by my husband Glenn and myself, and Dr. Marilyn Agin.  We will be announcing our board, and our research projects soon.   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!  Childhood Apraxia, Dyspraxia, Lingual Apraxia, Oral Motor Planning Disorder, Developmental Verbal Apraxia, Developmental Apraxia of Speech, Developmental 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, because not every child that is a late talker has verbal apraxia.  However, every child with verbal apraxia is a late talker, so it's a good idea to at least have an idea what apraxia is.  Don’t you agree?

Written By Tanner's Mom (Lisa Geng)

Our son Tanner's amazing positive results with EFA's are in a new book.  To read some of it online at Dr. Stordy's website, click on the link below.

click here to learn more about Dr. Stordy's book 

 

Send mail to Support with technical questions or comments about this web site. 
Copyright © 1998 
Last modified: Friday, June 03, 2005

To find your way around the CHERAB part of this site please click here for the index.

"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." -- Margaret Mead, anthropologist

Send mail to Support with technical questions or comments about this web site. 
Copyright © 1998 
Last modified: Friday, June 03, 2005

To find your way around the CHERAB part of this site please click here for the index.

"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." -- Margaret Mead, anthropologist