free email support discussion list:
information about communication impairments, see Cherab's
partner informational site, Speechville
more about The Late Talker, a new book for families of children
who are late to talk.
For All Of The Big PeopleWho
Help The Little Children
and professionals travel from 1to 3 hours one way to attend the once a
month meetings. That's 2 to 6 hours in the car
all together! People regularly attend our meetings from NY, NJ, PA,
and CT, not just because we are such a great group, but because we
are one of the only nonprofit or support apraxia groups in the entire
world. We are sure that will change as awareness is raised about apraxia.
In the meantime, and always, we welcome anyone who wishes to learn more
about how to help the child they care for who has apraxia.
A Mom Who Is Also A Nurse:
just wanted to write to share my experience with the hope it may help
other parents with "late talking" children and
raise awareness regarding verbal and oral apraxia.
I am a registered nurse and therefore am trained and skilled to perform
medical assessments. Of course, I am always first a mom when it comes
to my kids, but my professional background as well as my mom gut instincts
led me to be concerned that Justin's speech was not developing
appropriately as early as when he was just six months old. I repeatedly
shared my concerns with the pediatrician that he sounded different than
other kids, did not babble repeated consonants with vowels, had difficulties
with straws and drooled excessively with an open mouth posture. I was
repeatedly told that "boys talk late...don't worry...he's fine."
Finally, when Justin was eighteen months, I disregarded my pediatrician's
advice to wait until he was two and a half(!) and contacted early
intervention myself. We began speech therapy
at 20 months but I knew instinctively that this traditional speech approach
just wasn't enough...wasn't exactly what my son needed.
A few months into Justin's therapy a friend of mine coincidentally attended
your Apraxia Support group. Her child is not apraxic,
however, when she shared the information she received at your meeting
I was shocked. I told my friend, my husband and my parents that I really
felt Justin might have apraxia. I immediately addressed this
with our fairly inexperienced speech therapist who at this point had been
working with Justin for six months. She acknowledged that it was a possibility,
yet unlikely, and that if he was apraxic it was mild. Despite this
acknowledgement, the therapy approach did not change and as you well know,
conventional treatment does not work as well with apraxic kids. I
began researching apraxia myself and thanks to you and your web site this
Out of sheer frustration, I asked my pediatrician for a referral to a
neurologist for a medical diagnosis of Justin's speech issues. Well, without
surprise, the neurologist as well as his speech therapist agreed that
my son has both oral and verbal apraxia. As much as this is upsetting
and disturbing there was also a sense of relief as I now know that with
proper treatment begun early, Justin can definitely become an effective
verbal communicator. Justin is only twenty seven months now and I
am working on coordinating a program for him including lots of oral motor
work, O.T., P.T. and nutritional changes including supplementing with
essential fatty acids. Although
he is still very young, I do however wish that there was more awareness
regarding apraxia so that we could have started the right therapy even
earlier to give him the very best chance possible.
Thank you for all of your hard work which ultimately will help our kids
and I look very forward to seeing you at the Monday evening support group. It is no surprise
to me that people, including my husband and I, are willing to drive across
state lines to come to the meeting. It is such a wonderful opportunity
to get the latest information in order to give our kids with oral apraxia
a smile and with verbal apraxia a voice!"
Cindy Woods, NY
For My Family, For My Child...
as my commute is concerned, as I live 70+ miles away in Fairfield,
CT, and have to enter NJ via I-95 SB and the George Washington Bridge
[alternative routes wanted], it is murder. With no traffic, [such as on
the return home] it takes 1 1/2 - 1 3/4 hours. On the outward journey
from CT to NJ, however, it takes a good 2 1/2 hours - and that's only
if I leave my house by 4:00pm and drive like a complete nutter.
Why put myself through this torture? Simply because I learn so
much from the guest presenters and fellow parents. More importantly, it's
extremely reassuring and comforting to know that there are other parents
who are experiencing the same agonies, fears and anxieties that we are
and, as a result, they understand what we're going through. Friends of
ours with - for want of better word - "normal" kids, say they understand
but [and this is no fault of their own, of course] they quite simply don't.
How could they? So in a nutshell, I endure 2.5 hours of highway-inflicted
misery once per month to simply learn and seek support. It's no more complicated
than that. That's it from me, I look forward to seeing y'all next
Email: email@example.com [Home]
(Philippe) is 4 years old and I have been going around in circles with
all kinds of people in the medical field with him. I have even changed
neurologists and travel a far distance to see another neurologist. I have
appointments lined up still with developmental specialist, genetic specialists
and other specialists still to come. I just started with a new speech
therapist for the 4th time and I feel like I have just started getting
been a long and frustrating ride. My sons new speech therapist told me
to look up dysarthna and dyspraxia. I have never heard any of these words
from any of the pediatricians, neurologists, speech therapists and other
specialists I have dealt with before. I found nothing on dysarthna, but
as soon as I started to read about dyspraxia and developmental apraxia
of speech I felt like crying and doing a cheering dance all at the same
time because for the first time in my sons 4 years of life, I feel like
finally I am beginning to know something. Everything I read sounds
exactly like my son Philippe. Thank You Thank You Thank You for supplying
all this information. As I kept reading through all the material, I thought,
finally, that explains everything.
See my son was born fine. His development for 4 or 5 months was normal.
I have two other kids who are in gifted programs and learned things very
easily. One started reading at age 3 and the other at age 4. Their ability
to learn things quickly and to maintain it all was amazing. All of Philippe's
development was right on target with my other two kids until he got his
second DPT shot. He was 4 or 5 months old ( I can't remember the exact
date without looking it up anymore) when he received the DPT shot and
he started having seizures within that week. All his development up to
that point was gone. He just laid in one spot without making any attempt
to move around like he was prior to the shot, and he had no expression
in his face most of the time. I was nursing him at that time and he had
not had anything new introduced in his life other than that shot. We didn't
try any new foods, juices or clothes on him at that time. I had not eaten
anything different or had not taken him anywhere new or different other
than what he was already used to. So I know his seizures had something
to do with his DPT shot. The pediatrician immediately took him off the
Pertusis shot. The neurologists do not want to say it could have been
the shot. They are telling me that they have no idea what could be causing
Of course we have had every test know to them preformed on my son. - Another
strange thing that happened to my son during his time with seizures is
that after having his first seizure, he started sucking his thumb. He
started out with silent seizures and staring spells, then it developed
into grand-mal seizures. After his second grand-mal seizure, he stopped
sucking his thumb. The neurologists have no explanations at all about
that one. All they say is that the seizures probably triggered something
in the brain to start and then triggered it later to stop the thumb sucking.
insurance is not paying
for speech therapy because the doctors labeled him as Developmentally
Delayed because they told me that is what they have to say when they
can't figure out exactly what is wrong with him.
I did not mean to make this letter long, I just want to say thank you
again for your personal story and all the information you made available.
I have to admit, I was holding up well reading through all of this
information, buy when it came to the early warning
signs of Oral Apraxia, I had a melt down. I could not hold back
my tears because on the part where it asks " Can your child do the following
regularly, or on command..." I answered no on almost all of them. And
on the part where it asks " does your child...." I answered yes on all
-(My son) does get a little speech therapy in the school that he attends
for his needs, but the speech therapist is
there in class one day a week and does the therapy for 10 kids. To me that was
NEVER enough, so we got a private speech therapist which the school
told us it was unnecessary.*
He is 4 and he is still not very understandable in his speech. He still
displays a very lazy mouth. He still has that baby drooping of his muscles
at his cheeks and chin. The speech therapists says it is because he doesn't
use his muscles to the fullest capacity when making sounds. He has come
a long way with the exercises we do from the speech therapist. Thank God
he does not over stuff his mouth the way he used to. He still does
not lick the food off his lips all the way, He still uses his fingers
to do that. -
This is my first day ( and I have been online with this ever since
8:00 a.m. and it is now 4:38 p.m. with a 2 hour break in-between there
to run to my sons speech therapist) reading through all this information,
and I am going to make an appointment with my son's ( Philippe) pediatrician
to share this information with him and to find out how we can further
pursue finding out if in fact this is what my son has.
My speech therapist is the one who called this to my attention and told
me that she really thinks Apraxia is what my son may have. -I think he
is improving, but I sure would like to see him get all the help he
needs to develop into an independent adult. -
been a lonely and long road. Thank You again for sharing your story and
information with us. -Please feel free to post my e-mail with my e-mail
address attached to the testimonies page. I am welcoming any and all information
I can get. If anyone has information for me, please feel free to e-mail me.
Severity Intervention Matrix
Seek private evaluations from an ASHA certified SLP (Speech Language
Pathologist) as well as medical evaluations from a neurologist and a developmental
pediatrician who are knowledgeable about apraxia as well as other disorders.
Bring these evaluations to your child's school with the guideline at this
link. American Speech and Language Association National Guidelines for
the Roles and Responsibilities of the School-Based SLP (Other great information
here as well)
Another Parent Helped By The Newspaper Article
My husband and I will be attending the Sept. meeting. I am so thankful for your article
in the Star Ledger Newspaper a few
months ago. My son is working with Lori Roth and we love her, and we owe
your website and articles. Thank you.
Nicholas, now age 2, says, "moo, dada, opba ( for open), I see it, tick
tock" and a few sounds. He wasn't making really any sounds until he
started seeing Lori in July of this year. We are very
proud of him.
For The Twins
Thank you for responding, because of your website I am very confident
in choosing the best developmental Ped. Dr. Agin
is moving into a new location but called me at home to tell me she would
like to see my boys in early Sept. I am looking forwarding to meeting
her and I will keep in touch with you. THANK YOU!!!!
Thanks Lisa - you
are truly a wonderful person for taking the time to help me out and for
setting up such a wonderful website - I can't tell you how much it means
to me having some support from people like you and others I've met on
I think I'll start with two caps of Efalex with
Renee and see how it goes. In the meantime, I have been checking out the
sites you mentioned and links to other websites. Sometimes I just don't
have the time to spend on the computer I would like and I feel guilty
if I'm on here and not spending time with my daughter.
I have found a Prompt therapist about an hour away from us so I'm waiting
on a call back from her - I hoping with maybe starting the EFAs and trying
we will see some improvement in Renee's speech therapy. It's been an emotional
roller coast ride!
Well anyway thanks again! Take care and God Bless ( you can put in the
"Thanks" section with my e-mail address)
I really appreciate all your help.
have a two year old daughter who was just diagnosed with verbal apraxia.
I was comforted to find (your nonprofit support group) and would love
to get involved in network. Are you aware of any in the Philadelphia
area? I live in Montgomery county and work in Philadelphia and am just
trying to piece together some services for my daughter and found your
website and Apraxia Kids extremely helpful. If you are aware of any
support groups in my area that I can get involved in, I would love to
hear about them.* Any advice greatly appreciated. Thanks for the
* Mauri Blefeld is starting a apraxia
support group in the Philadelphia area. Please email Mauri for more information.
657 Valley Road Box
339 Gillette, NJ 07933
Email Lisa Geng President, or leave
a message at 732-871-6013
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