All Of The Big People,
Who Help The Little
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Late Talker vs. Apraxia? NEW:
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Many parents 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.
From 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 was
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
"-As far 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 month.
My son (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
This has 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
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 his delay.
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
- Our 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 except one.
-(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. -
This has 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
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.
-Our son 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
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 the net.
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
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 Prompt therapy 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)
Again, I really
appreciate all your help.
I 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 site.
Mauri Blefeld is starting a apraxia support group in the
Philadelphia area. Please email
Mauri for more information.