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A Letter To Parents Who Have A Child That Is A Late Talker

7/4/00

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 Tanner, who was obviously very bright, being non-verbal at 2 years - 4 months since he 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) Besides, our first born son 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 concerned, 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!)  But, 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.  This was in addition to the fact that 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 blow the candles out on his second birthday, and he didn't know how to blow bubbles until almost 3 years old!  (We didn’t know these were warning signs of Oral Apraxia-which can occur with Verbal Apraxia) 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!

Thanks so much to Sharon Gretz for putting together an incredible website
and list serve for parents called Apraxia-Kids.  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.  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 later 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 a 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!)   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.

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 still not diagnosed until 6?

According to Dr. Diane Paul-Brown, director of clinical issues in speech-language pathology for the American Speech-Language-Hearing Association in Rockville, Md., "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.  And in the book Developmental Apraxia of Speech, by Hall, Jordan and Robin, called "Working with Preschoolers
Exhibiting DAS(Developmental Apraxia of Speech)" starting on page 174, here
is another quote:

"...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 like dyspraxia, DAS, motor planning disorder, etc.  Besides the words “neurologically based” can be misleading to parents, most children with apraxia are above average intellegance, 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.  It could possibly be from head injury, high fever, or perhaps it’s present from birth.  Until more studies are done, we can only assume, and you know what they say about that!

I co founded the non-profit Children's Apraxia Network with the help of wonderful parents and professionals.   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 of us involved with Children's Apraxia Network work to help people understand what apraxia is, so that we can help our children, and others, overcome it.  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 word(s!) (Childhood Apraxia, Dyspraxia, Lingual Apraxia, Oral Motor Planning Disorder, Developmental Verbal Apraxia, Developmental Apraxia of Speech, Developmental Verbal Dypraxia, Developmental Articulatory Dyspraxia etc.) And Remember:
Knowledge is powerful in helping us to help our children with apraxia.

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, can-not 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) 

Even though Tanner still has a ways to go, strangers now usually understand him.  (It’s frustrating for him when he 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! 

  My husband Glenn and I are advocates for Early Intervention for a strong reason.  Our oldest son, the one with all the birth trauma, is now mainstreamed, going on to first grade, and is an excellent student with tons of friends.  You would never know he ever was in any type of therapy at all, especially if you saw him as one of the “Lollipop Guild” in a recent school play production of the “Wizard of OZ”.   Glenn and I both work from home to provide as much support as possible to our children, right now especially Tanner.

  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 could also seek a qualified Speech and Language Pathologist to do an evaluation through Early Intervention, or privately through ASHA

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 Lisa Geng
President -Children's Apraxia Network
http://community.nj.com/cc/apraxianetwork

 

 

Send mail to Support with technical questions or comments about this web site. 
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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