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