Re: what is the future like?

[Guest guest]

I am in a very similar situation to yourself and also new to the group. I don't

have any answers for you but an anxious to hear the other replies. Just wanted

to say " hello " and that you are not alone. Welcome.

>

>

> Sooooo-do children ever fully recover from this? what percentage of children

have learning disabilities, need tutors, help reading/writing---trying to

understand and prepare myself since noone can really tell me. I realize every

child is different but some kind of idea would be great. I live in Ga, does

anyone know an amazing SLP for apraxia? How do I know if I have the best SLP

for my son? They all say they work with apraxic children. Anyone have info on

the Atlanta Speech School-any info would be great!!!

>

> Sammy is 3half and has been in therapy since 1half. He was in private school

last yr with a private facilitator. This year he is in a special needs program

at out local elem school. He has excelled and flourished there! He is

cognitively at 4half. Everyone says he is a good listener, follows direction,

smart, understands just about everything but missing the speech component. He is

keeping up with other typical kids on the playground, he has hypotonia too. I am

glad I can say all these things and brag since I couldn't say most these things

6 months ago! He has 120 minutes of ST on his IEP from school plus 120 minutes

extra private speech I do a week plus aquatic therapy. I'm exhausted to say the

least, also have a 22 month old. I wan to do everything I can to help him. My

husband was a late talker and walker and had learning issues, and know he had to

have tutors and was frsutrated/embarrassed at times. I don't want Sammy to feel

those pains. All help and advise is welcomed!! I can not say how happy I am for

this group, I just wish it cold also be in person and have something locally for

moral support...nonetheless I am grateful.

>

[Guest guest]

Hi,

My child is at the ATL Speech School. You're lucky you had a good exper. in

public school. Most of us are at Speech School b/c of horrible experiences in

public. You can email me separately. This is probably worth a lengthier

discussion than an email. -marie

________________________________

From: savyrach <savyrach@...>

Sent: Sat, March 26, 2011 6:58:03 PM

Subject: [ ] what is the future like?

Sooooo-do children ever fully recover from this? what percentage of children

have learning disabilities, need tutors, help reading/writing---trying to

understand and prepare myself since noone can really tell me. I realize every

child is different but some kind of idea would be great. I live in Ga, does

anyone know an amazing SLP for apraxia? How do I know if I have the best SLP

for my son? They all say they work with apraxic children. Anyone have info on

the Atlanta Speech School-any info would be great!!!

Sammy is 3half and has been in therapy since 1half. He was in private school

last yr with a private facilitator. This year he is in a special needs program

at out local elem school. He has excelled and flourished there! He is

cognitively at 4half. Everyone says he is a good listener, follows direction,

smart, understands just about everything but missing the speech component. He is

keeping up with other typical kids on the playground, he has hypotonia too. I am

glad I can say all these things and brag since I couldn't say most these things

6 months ago! He has 120 minutes of ST on his IEP from school plus 120 minutes

extra private speech I do a week plus aquatic therapy. I'm exhausted to say the

least, also have a 22 month old. I wan to do everything I can to help him. My

husband was a late talker and walker and had learning issues, and know he had to

have tutors and was frsutrated/embarrassed at times. I don't want Sammy to feel

those pains. All help and advise is welcomed!! I can not say how happy I am

for this group, I just wish it cold also be in person and have something locally

for moral support...nonetheless I am grateful.

[Guest guest]

While nobody can give an exact answer as there are so many variables such as

severity, how many and what type of diagnosis, therapies, placement etc. what I

can share as the list owner here for over a decade is that the majority today is

way different then the majority when my son Tanner was first diagnosed with

" apraxia/dyspraxia it's the same thing " by his SLP back in 1999 after 5 months

of therapy with just about zero progress outside of being able to blow bubbles

and make simple sounds like " Ch " or " ooo " but only if you played this one song

and acted it out but he couldn't put those or any other sounds together and his

only " words " he used after all those months of therapy were " mmmm " and " ma "

Tanner was 2 years 9 months old at the time with an expressive ability that was

greatly behind his receptive- we nicknamed him Harpo because he tried with arm

and body motions to get his points across.

After Tanner got his diagnosis after all those months of therapy 2 times a week

45 minute session from St Barnabas Medical System's speech department where he

went for private therapy (because not one person told me that Tanner would

qualify for Early Intervention -can you believe that?! And back then I didn't

know all I do today -we paid SOOOOO much for therapy a week)

I jokingly said " OK so he has apraxia or dyspraxia whatever that is. He's still

going to talk right? " silence and blank stare from the SLP. And then she says

" Well. It depends " So I said " What's that supposed to me " it depends " that got

Helen Keller to speak for God's sake! My son isn't deaf for blind! "

Back then I thought apraxia was rare, and back then when I did find a support

group for apraxia the website didn't sound anything like my son because all the

examples of apraxia would be for a child that was talking. We took Tanner to

see Dr. Marilyn Agin a developmental pediatrician who had been an SLP for 7

years prior to medical school who diagnosed Tanner with oral apraxia and said

" which means he probably has verbal apraxia as well. He doesn't know where his

tongue is in his mouth. " Tanner was also diagnosed with hypotonia. He was later

diagnosed with sensory integration dysfunction and I searched for information

about the apraxia and hypotonia and sensory issues all being together in one

child as they were in Tanner and on this other group I belonged to I was told

outside of apraxia the other issues were [OFF TOPIC] (that's what they would add

to the subject of my messages!!!) In addition in this group nobody said a peep

about oral apraxia. Here is my first message ever to any grouplist anywhere

about Tanner -which was before our trip to Dr. Agin- it literally was the very

day he was diagnosed by the SLP.

Subject: Help for Tanner!

Date: Wed, 10 Mar 1999 01:52:42 -0500

From: & Glenn <shop-in-service@...>

apraxia-kids@...

References: 1

Other Parents:

Help! Our two year old son Tanner, who was born July 11, 1996, was

diagnosed today with apraxia after 4 months of speech therapy at a

hospital.

Unfortunately, before Tanner was 2, when my husband and I were

concerned about how quiet he was, our pediatrician wasn't. She

didn't see any reason for concern at that time since he was always

very bright and his comprehension was excellent. Undaunted, we

pushed to get a hearing and speech evaluation done anyway. It was

like pulling teeth! On a suggestion from Tanner's speech therapist

to get him evaluated, Tanner was also just recently accepted into the

early intervention program in our state of NJ. Tanner (whose knick

name is " Cherub Boy " since that is what he looks like) in every

other way, looks and acts normal (and has tested above average.)

Since Tanner has been going to speech therapy twice a week, he has

made great improvements on imitating basic simple sounds.

Unfortunately, other than some basic sounds he will now mimic if

prompted, he is not attempting to say words yet. For the most part

he is quiet and observant. If you say " 1, 2, 3, a, b, c " to Tanner,

he may try to imitate you, but it will be the inflection of the word

with the sound " mmmm " . Basically that and pointing is how Tanner

communicates all the time.

From the time he was a baby, and up until recently, he rarely showed

any facial expressions. Now, with the small amount of therapy he

has had, he noticeably smiles frequently and can for the first time

blow bubbles!

Around the age of one, Tanner had two episodes of Roseola with a

very high fever each time. Is there any evidence that a high fever

may cause apraxia?

Even though his hearing is normal, would a school for the deaf which

is able to teach speech to deaf children be useful to him in

addition to his other therapies?

We are new to the network and we were wondering if any other parents

or professionals in this network have any words of wisdom. We e-

mailed a local support group. It's comforting to know that this

condition has been resolved successfully by others. From what we've

read on the subject, most of the children at Tanner's age at least

try to talk, does Tanner's condition sound severe? Or, maybe a

better question, was your child, or those you work with, similar at

some point?

Just one other thing, how many e-mails can one expect to get a day

with being on the regular list?

Thanks in advance for being out there and sharing! Out of

curiosity, does

anyone know how many children have aprixia? Tanner's therapist said

it's not that common.

Best!

and Glenn "

So as much of what I asked about as I got Tanner's diagnosis of oral apraxia,

hypotonia and sensory issues in my almost 100 percent nonverbal child who didn't

fit the classic apraxia profile of this one group so all I asked about was off

topic I was being forced to read adult neurology sites for answers- yes this is

all how it started. Trust me my background prior to this was 100 percent

different as I went to School of Visual Arts in NYC and got a job working in

animation for commercials and half hour specials in NYC and then worked on live

action and toy design- worked with all the major toy manufacturers (most fun -I

worked on commercials for MTV!!) nothing to do with any of this except I always

loved children even before I was a parent.

So when Tanner didn't smile when I played with him like a nut...and trust me as

one who almost took at job at Sesame Street and did work for Jim Henson a bit- I

knew how to be a nut just as any other person that works in animation. But

Tanner would give me this blank look. I nicknamed him the " serious babe that is

going to grow up to be a banker and think I'm a nut "

I applied for Early Intervention for Tanner pretty much a day later after

reading the dismal reports about apraxia from this other group and knowing my

son had some " rare " disorder where (as I told everyone) " He may NEVER speak! "

Tanner was 2 years 9 months when I applied and by the time he was evaluated and

approved for Early Intervention services he had 6 weeks once a week of Early

Intervention therapy with Zimet CCC SLP who worked through Children's

Specialized Hospital in Mountainside NJ. Tanner's Early Intervention goal by

the time he reached 3 years old in 6 weeks " he will look at a ball and say " ba "

because even though Tanner could say " ba " if you played music and acted out

something- he never said it. In fact during the evaluation they couldn't get

Tanner to say a word- I was there and showed them he could say a few sounds.

But receptive -for Tanner the younger he was the higher he tested -at Early

Intervention age with standardized testing my son was a little genius -and with

a sense of humor too. But he did almost everything with virtually zero facial

expressions due to his oral apraxia.

Anyway Tanner was diagnosed and almost from day one of diagnosis- I started a

support group in NJ for this rare condition out of Children's Specialized

Hospital in Mountainside NJ with 's help and the group exploded.

First article about our group from the hospital

http://www.cherab.org/news/childrenshospitalarticle.html

Which was picked up by The Star Ledger in NJ

http://www.cherab.org/information/dietaryeffects/StarLedgerarticle.html

Which was read by a director for Inside Edition (spoiler alert -some kids now

grown up to teens and adult with apraxia in this

http://www.cherabfoundation.org/2001/inside-edition-segment/

And here's the 2 day trip for this one segment we did

http://www.cherab.org/information/phototrip2000.html

Through in person meetings which we ended up having for years out of St Barnabas

as well as Children's, with a limitation RSVP of only 100 people allowed per

meeting and people standing by the door and in the back of the room -traveling

for up to 6 hours to get to our meeting (no not kidding) I learned that Tanner

was NOT alone. I learned that hypotonia and or sensory issues are NOT " off

topic " as most of the kids with apraxia had one or both as well just like Tanner

as we all met in person and not just on a grouplist. I learned that apraxia is

not just a childhood condition. I learned that apraxia was not rare. But at

this point -yes the way most of the older kids spoke- they sounded like they

were deaf in many cases. I learned that therapy at this point was for years and

years well into their school years and perhaps beyond. And then I read up on

research done by Dr. Stordy a researcher from the UK about her work

with " ADHD, dyslexia and dyspraxia " using fish oils (essential fatty acids

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-\

autism-and-other-communication-impairments/ and Tanner's first experience on

fish oils including what happened in Early Intervention where he went to over 20

actual words in just a week or so and regressed when we took him off to get

testing for school was written up in a book ironically written by the very same

Dr. Stordy who is the one I read the research about and my co author of The Late

Talker Malcolm Nicholl.

Here is Tanner's story in The LCP Solution

http://www.cherab.org/information/dietaryeffects/LCPbook.html

On the other grouplist the above story was shocking to say the least and all

these people starting asking me questions...here's my original messages to this

grouplist about fish oil before we were asked to " take it elsewhere " and not

allowed to talk about fish oils at this other group which is how this group

started -and how I learned the hard way that censoring others can hurt our

group. This is why all views are shared here. There is no such thing as [OFF

TOPIC] because we have a spectrum of children represented -and this is how we

learned about gut issues, constipation diet etc. as well.

Re: [APRAX] Help for Tanner!

Date: Wed, 17 Mar 1999 00:28:56 -0500

Hi ,

I just purchased the Efalex at a Rite Aid in NYC today. It was with

the vitamins, and it says it promotes healthy brain and eye function. I can let

you know if we see a difference. Right now, Tanner is not speaking, except for

basic sounds and " Mama " Things like that. I'll keep you posted though if he

starts reciting War and Peace next week!

Yeah, it is to bad you live so far. There is not that many of us

out there.

Mom to Dakota 4.8 and Tanner 2.9 (apraxia)

Subject:

Re: lellow!!!!

Date: Wed, 31 Mar 1999 23:32:13 -0500

Remember in the movie Bambi when he is first learning to talk and he

learns a word, than calls everything that one word until he is corrected-That is

Tanner now! He's walking around for almost 24 hours now saying lellow over and

over. But, he is trying so hard! When you say a new word, he tries to say it

too! Efalex really works !

Hey, how are the little ones feeling today? Are we still on for

next Wednesday? Someone named who lives close to me from the other apraxia

network (the one from Hawaii) wants to get together too. I told her about next

Wednesday. I was wondering if maybe my house would be good, if I'm in the

middle. Am I? Where does Debi live again? It doesn't matter though, Dakota

doesn't have school next week.

Thanks for the cheer! I'm still in shock at how well this stuff is

working. People on this list probably think I work for Enfomal or something!

Talk to you later!

Wow Tanner!!!!!!!!!!! That's FANTASTIC!!!!!!!!!!!! Guess I'll have to run out

and buy this stuff!!!!!!! I am so happy for you, & Glenn, and for you

Tanner!!!! This just made my day!!!!!!!!! Thanks for sharing.... go

Tanner!!!!!!!!! YEA!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Subject:

Efalex update

Date: Mon, 05 Apr 1999 00:10:09 -0400

Hi All and Happy Holidays!

Many of you may have read that Tanner, who is 2.9 years old and has

verbal apraxia, has been taking the liquid Efalex for the past 2 and

a half weeks. Other than an expressive language delay, Tanner has no

other issues. A month ago Tanner was evaluated twice to have the expressive

language ability of a 12 month old both by his therapist,

and Early Intervention, who just accepted him in.

Could there be a deficiency in children with apraxia? In layman's terms, could

Efalex to an apraxic child be similar to Vitamin C to

someone with Scurvy? Of course there may not be such a thing as a

" miracle " pill, but we are so convinced that the changes are from the

Efalex, that Glenn and I don't want to try the Flax Seed Oil just

yet.

Tanner has been in speech therapy twice a week for the past 5 months, and both

Glenn and I work with him consistently at home. However, within the past 2 weeks

we have seen such dramatic changes that we both believe it to be as a result of

the Efalex. We don't know if anyone else experienced the changes as soon as we

did with Tanner.

Within 2 weeks he attempted to say I love you, " I, ahh, ooo " (Before then, most

of the time Tanner would say, " mmmm " in the right tones and point, he didn't

attempt speech even with prompting. This is a child that was saying little more

than " Ma Ma " three weeks ago, and wasn't even able to put the sound " ch "

together with the sound " oo " He wasn't even saying " Da Da " !) The other day,

Tanner pointed to the color yellow without any prompting and said, " lellow " .

Tanner is now saying quite a few more words, and he is being consistent with

what words he learns! He's trying to talk all the time now, something he wasn't

doing at all before. As a matter of fact, before 3 weeks ago most of the time if

you tried to get Tanner to say a word, he would stamp his foot and say, " mmm " in

the tone of NO! Now, he loves pointing to, and saying colors. (Purple! Blue!

etc.) His therapist is thrilled with his progress in the past week, it's really

been a remarkable improvement!

Coincidence?

Maybe, but we are hoping to see more improvements just as rapidly.(Putting 2

words together, etc.)

Right now, Tanner still is unable to lift his tongue from the bottom

of his mouth except by accident. One thing we try is putting peanut

butter on the on the outside of his mouth on top of his lip and make a game of

it that he has to lick it off. He tries to use his bottom lip to push his tongue

up, but he still can't raise it enough to lick it off. We are curious to see if

that changes soon too. It's only been two and a half weeks for us, but we have

not seen any negative side effects from giving Tanner fish oil other than he

still hates the taste. We have found cooking it in his eggs or letting it soak

into his cereal orpancakes is the only way we can give it to him without any

problems.

Does anyone know about cooking with Efalex? Any suggestion on how to

have him swallow the pills if we buy them next?

Just one other note for those of you who asked how to respond to

people that say, " Oh, he'll be talking soon " (We ran into that lots this weekend

with the Holiday, especially because Tanner is starting to " talk! " ) Maybe it's

us, but Glenn and I never get mad at people for

saying this. We feel it's coming from love, not maliciousness. We

usually say, " We really hope that happens, but we are doing whatever

therapy we can just in case. " They usually then say, " Oh, of course...So what is

this called again that he has? " We then give

them a brief description of what Apraxia is and how well Tanner is doing with

therapy.

Anyway, for anyone who cares to know, we give Efalex fish oil two thumbs up.

We'll keep you updated with what happens in the weeks ahead!

and Glenn, Parents to Dakota, 4.8 and Tanner 2.9 (apraxia)

Of course this was long ago when Efalex was still produced by Efamol when it was

first developed by Dr. Stordy...and long before they created ProEFA -which had

to do with me bugging them and us doing parent and professional anecdotal

feedbacks which led to the First Apraxia Conference

http://www.cherab.org/news/scientific.html

But to shorten the rest this is the history of Tanner here

http://www.cherab.org/news/scientific.html which includes the journey with

therapy and ProEFA and then just last year when Tanner was 14 we started NV and

here's how that happened

http://pursuitofresearch.org/the-history-why-nutriiveda-for-therapeutic-use-for-\

autism-apraxia-etc/ and one of Tanner's updates is here

http://pursuitofresearch.org/products/nutriiveda/nutriiveda-testimonials/

So if anyone wonders why I am such a HUGE believer in essential nutrients -it's

because of the last ten years of my life witnessing what essential nutrients can

do and have done to my son and so many others. If you are reading this and have

not checked into fish oils essential fatty acids

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-\

autism-and-other-communication-impairments/ and NV essential amino acids and

nutrients

http://pursuitofresearch.org/products/nutriiveda/nutriiveda-ingredients/ -

please share with your child's doctor

http://pursuitofresearch.org/find-a-professional/ and get started yesterday!!!!

Today Tanner is 14 so I can't tell you up to adult or even HS yet -but Tanner is

mainstreamed and completely independent. He still messes up on speech here and

there but he is very popular, active in basketball and football and other

sports. He is just over 6 foot tall and adorable -and he wants to be a special

education attorney when he grows up -he's been looking into what he needs to do

in college. I've shared just recently with him some of the horrific stories he

has gone through- and he wants to stick up for other children like him. I told

him that if his speech messes up when he is in court who cares? He can prove

that doesn't matter. So I couldn't be prouder of him and know that if Tanner

just like any other child has the ability to do whatever he wants to be.

Tanner is no longer in therapy but once in awhile is overseen by Dr. Renai Jonas

an SLP in Boca (Florida) who monitors his progress.

Because this isn't up to adult -I have 2 other messages to share I will post

next

=====

[Guest guest]

More updates from our group and an article that just came out to bring more hope

The first is from about Khalid. Their story is featured in The Late

Talker and as I shared below about Inside Edition Khalid was one of the teens

featured in the segment. has been a huge part of this group for years and

years -but has cancer and is spending time with her family due to the type of

cancer it is. I pray they find a cure!!!!

Khalid's Grown Up ( and Self-Advocacy Resources )

Tue Apr 29, 2008 6:45 am

khalidsvision " <khalidsvision@...

Hi , Jeanne, Tina, Kate and all else,

Given much thought to your heartfelt notes, as well to those private

awaiting messages asking similar questions, by answering to the board

hopefully this may accommodate those teens and adults who grew up

with apraxia. We didn't have this type of support then, parents today

have such an advantage to so much support. I'm happy this privilege

is now available. Imagine having nobody to talk to about your child

and not having the internet to research even simple words or acronyms

like " SLP " when you don't know what that means.

Back when Khalid was age 2 all anyone could tell us was that he had a

confounded severe delay in his speech. His receptive ability far

exceeded his expressive ability. For years we didn't know about

apraxia and in addition to speech problems we knew that Khalid also

had problems with motor planning issues in his body. While I coddled

him my husband always pushed Khalid to do more. Looking back on this

I guess the two of us were a good team. Being we really had no

support like many of you have here today. We had no one to turn to,

and we didn't even have a diagnosis for years.

With the help of a wonderful school therapist, Khalid wasn't

diagnosed with apraxia until he was about 9 yrs old. That's when he

finally started to receive effective therapy and his therapist was

sensitive to Khalid's older age and took the speech therapy to the

basketball court with Khalid which my son loved. With appropriate

treatment tailored towards his needs, words progressed. Though

Khalid's speech was developing, he sounded abrupt, choppy, and

monotone. He worked so hard on his speech and at the same time he

worked hard on his motor skills as well as his academics. There were

times during those early years that he was viewed in a negative light

by a teacher or other student s-and that was painful for Khalid as

well as us as parents. Khalid was always very bright and understood

everything but at times people assumed he didn't. Also we never got

the diagnosis of oral apraxia but when Khalid was younger he had very

few facial expressions so that also led to others making false

assumptions. Khalid spoke in simpler and shorter sentences at a slow

rate. He did have a few friends that accepted him the way he is.

Again however Khalid didn't get appropriate therapy when he was

younger like many of the children today. His therapist worked with

him on his robotic manner of speaking. Probably for Khalid the most

difficult year was 3rd grade, but things started to improve from

there.

By the time he was in mid- school his articulation and prosody of

speech improved significantly. With techniques and strategies

learned, he began to mastered longer words like hospital, and his

conversational speech continued to improve.

Khalid self reliant, transitioned into high school years with no

problems. Unlike some of his elementary school years, for high school

Khalid thrived with friendships, peers and had an awesome advisor and

some special teachers. He dated- attended school dances and his

senior prom. Three years have passed and those friendships remain

strong today and teachers are still very close with him today.

Regarding academics he faced challenges with mathematics and written

expression, as well there were words he needed to use in classes at

that point that needed practice. Khalid pushed himself to overcome

those challenges and prove he could do the work. He continued to work

on expanding his vocabulary to more complex words. One of the

strategies I recall he used most to overcome; he'd jot down

struggling words on practice note cards. With much repetition he'd

break down the sounds verbally and/or mentally, until he finally

owned it. These are things that you can help your children with but

this was something my son did himself in high school.

I believe what helped Khalid most throughout high school years was

that he became a self advocate to his own challenges and strengths in

education. He scheduled talks with teachers and advisors in areas of

concern to him. Of course we as parents wanted to help, but being he

wanted to do these things himself we allowed him that. Proud of

Khalid, we knew it would not be easy to pull back- Khalid was self-

reliant, determined to carry on with his own education. Looking back

it was probably a stronger case coming from Khalid himself rather

than from us. At a certain point we have to encourage our children

to stand up for themselves if they are able to. We remained his

safeguard at home; our responsibility to him was to be there when he

needed us for assurance and guidance and of course love.

To best describe Khalid today- he's twenty one years old and is off

to college and largely independent leading a busy life. He has a

lovely girlfriend and a very active social life. He is still quite

the athlete, loves basketball and even on occasion has played

scrimmages with the college team. In leisure time with buddies he

plays pick up football/basketball games and lifts weights at the gym.

Drives his 4Runner with no problems and has a steady job. He attends

the University full time and will be completing his 3rd year,

maintaining a B GPA. Regarding courses, mathematics is demanding for

him at times. He prefers taking math in the summer being that classes

are smaller. For support he arranges to get tutoring services on

campus. His favorite study is Political Science; he specifically

likes speech performance courses that develop critical thinking

skills. Khalid has become a decisive speaker and speaks passionately

on topics which examine world current events. Some other classes he

enjoyed to name a few- Filmology (loves documentaries and movies),

Speech, Arabic did very well in 2 level courses.

Khalid's other interests, he's quite the globetrotter, always eager

to travel. Over the years he feels fortunate to have visited places

abroad. His next venture will be to Egypt in December 08 during his

winter break. I'd say Khalid is more of a traveler than a tourist. He

prefers excursions off the beaten path, getting to know the locals.

Jadd is cool that way too. Khalid hopes to study out of the country

in the future. His eyes have broaden since he and I traveled to Doha

Qatar to represent the CHERAB Foundation at the Shafallah Center

International Forum on Children with Special Needs which was hosted

by the King and Queen of Quatar in Association with Newsweek Magazine

(http://www.shafallah.org.qa/) This event will always be a momentous

historic trip for us both, so happy to have been a part of it.

Khalid's grown up to a caring adult and pleased with the man he

is today. To members who ask, do memories of his struggling years

with apraxia have an effect on him today. I will share that his self

concept could not be healthier. Khalid is at peace of those trying

years with apraxia, he returns only to carry a torch in the light of

other's struggles. When he does disclose experiences it's only to

bring some understanding, awareness/and or encouragement from his

experience with Apraxia. Khalid knows how fragile the heart is and

foremost what it takes to rise above and conquer daily cares. He does

not see his story above anyone else. He believes strongly that

success comes in many important measures, no matter how different. It

comes day after day in your child's personal growth- reaching their

best wherever they are on this journey.

Khalid came to realize early on that everyone comes upon situations

or conditions they will face at some point in their lifetime that

they must work through. That he was not alone in challenges. Such is

life; we are sharing in individual journeys with family dealing

with neurological conditions. Khalid's Grandparents are not in good

health. My father is in the late stage of Alzheimers, losing his

recognizable speech. His Aunt (my brother's wife) battles a form of

Lupus. As well my brother's daughter- his cousin 23, once an

energetic cheerleader in high school and college, today wheelchair

bound, diagnosed with Progressive Multiple Sclerosis (RPMS) at age

20. She has the worse form of MS. Prognosis, she was given about 2

years and through God's amazing grace she is still with us. 's

amazing spirit touches us, she praises God always for what he's given

her, not looking at what's been taken from her.)

Khalid (and Jadd )as brothers both identify with each other's

individual strengths, as well as the weakness at times of

struggling words or actions. When I see my sons hold those in

hardship close to heart, I'm taken by their care, knowing they are

so young to understand with such deep compassion those among us that

are frail, or sick, or that have numerous challenges. As a mother I

wish my own boys never had to go through struggles, and to know that

some may ridicule children while they are trying so hard just breaks

our hearts. For the mom's who spoke on this, there are ways to deal

with these issues and Khalid helped share some of his own strategies

in The Late Talker book. It's most important to teach our children to

become self advocates so that at some point they learn how to stand

up for themselves.

Here are insightful links that might give tips on how young people

can learn self-advocacy skills.

Know Yourself, Know What You Need, Know How to Get It

http://www.wrightslaw.com/info/sec504.selfadvo.nancy.james.htm

Parenting Post-Secondary Students with Disabilities: Becoming the

Mentor, Advocate, and Guide Your Young Adult Needs

http://www.ldonline.org/article/12073

Young people with communication disorders- Information for High

School and University Students and their parents and teachers

http://members.tripod.com/Caroline_Bowen/adolescents.htm

Preparing for Life After High School

http://www.schwablearning.org/resources.aspx?g=4 & s=7

Parents, I hope this information helps answer more of your questions.

I will ask Khalid or Jadd if they would like to share with the group

one or two of their favorite self advocacy stories or tips.

Mustafa

(Celine Dion - Miracle)

Another update -but many more if you search the archives

From: " Pamela Madigan " <pdwm56@...>

Subject:Winding down our speech therapy!

To:kiddietalk@...

Hi : I didn't post this publicly simply because I

know so many people are going through much more

difficult things than we ever have, even before Pro

EFA.

But I have to share that our daughter whose speech was

so hard to understand a year ago is now winding down

her speech therapy. She will be 6 in November and has

been reading for almost a year. So now she's only

going in to read to her ST so she can monitor her

speech maturation (as she called it). She was so

overwhelmed by how clear her speech was after the

Summer she couldn't believe it was the same child.

Both of our children were adopted from China as

toddlers. They are both exceptionally bright (and

beautiful) girls but our older one was diagnosed with

apraxia and then not several times over the past 3

years. I took her to my Naturapath who was aware of

the use of EFA's but put her on DHA Jr which didn't

seem to do anything for her. About a month later I

started her on Pro EFA (in March of this year as I

recall) starting with one capsule, then adding a

second about a month later.

Seven months later her primary st said, " we can reduce

sessions now, she doesn't need me " ! So I've cancelled

our private st (which was covered fully by our

insurance) and have kept the public school st because

I think the way she works, works better for our

daughter.

I just wanted to say a big thank you to you and the

CHERAB foundation, the Apraxia Kids website and all of

the input and enthusiasm you put into your work on

behalf of our children. Without you we would be no

where.

Our daughter is one of the best students in her class,

including reading. She also is very comfortable

getting up in front of her class and sharing anything

with them verbally. She's also incredibly atheltic and

the kindest, most beautiful and brave soul you could

ever meet. All this from a 14 month old who was so

weak when we adopted her she could barely hold her

head up, couldn't roll over, couldn't crawl.

It's truly a miracle!

When she heads in for her annual healthy child check

up in a few weeks, you can bet our Pediatrician will

be flabbergasted by how well she is speaking.

I had shared with our Ped and got her ok for putting

her on Pro EFA. She has other clients on it but is

only concerned about it's safety as she has seen a

child with Vitamin A overdose in her practice.

So Thank you

[Guest guest]

Good day to both of you. Just wanted to welcome you to the group.

I do want to mention, just in case you have not already seen this, that there is

a lot of talk about a product called NutriiVeda, sometimes referred to as NV.

Take a look at the postings prior to yours and see what that's all about. I wish

I could give you more, but it would look like I'm spamming the site.

As for the first question, I'm sure will get around to answering this

question as well. She is our expert and founder of this group. Ask her anything,

if she does not have the answers, she'll know how does.

All the best.

> >

> >

> > Sooooo-do children ever fully recover from this? what percentage of children

have learning disabilities, need tutors, help reading/writing---trying to

understand and prepare myself since noone can really tell me. I realize every

child is different but some kind of idea would be great. I live in Ga, does

anyone know an amazing SLP for apraxia? How do I know if I have the best SLP

for my son? They all say they work with apraxic children. Anyone have info on

the Atlanta Speech School-any info would be great!!!

> >

> > Sammy is 3half and has been in therapy since 1half. He was in private school

last yr with a private facilitator. This year he is in a special needs program

at out local elem school. He has excelled and flourished there! He is

cognitively at 4half. Everyone says he is a good listener, follows direction,

smart, understands just about everything but missing the speech component. He is

keeping up with other typical kids on the playground, he has hypotonia too. I am

glad I can say all these things and brag since I couldn't say most these things

6 months ago! He has 120 minutes of ST on his IEP from school plus 120 minutes

extra private speech I do a week plus aquatic therapy. I'm exhausted to say the

least, also have a 22 month old. I wan to do everything I can to help him. My

husband was a late talker and walker and had learning issues, and know he had to

have tutors and was frsutrated/embarrassed at times. I don't want Sammy to feel

those pains. All help and advise is welcomed!! I can not say how happy I am for

this group, I just wish it cold also be in person and have something locally for

moral support...nonetheless I am grateful.

> >

>

[Guest guest]

For anyone wondering do not try to print this message out! My printer just ran

out of paper LOL! Wow thank you so much for all of this. The book the late

talker was my lifeline when my son was diagnosed and this letter was what I

printed out to share with my family to explain my son's diagnosis

http://www.cherab.org/information/familiesrelate/letter.html I found this group

which I am forever grateful for and learned about therapies, preschool,

kindergarten, fish oil, NV and yes hope. Even though I doubted everything

including my son's diagnosis I learned things here that nobody else shared with

us but that have greatly helped my son's progress. I don't know how else to say

it other than saying THANK YOU!!! Kate

>

> While nobody can give an exact answer as there are so many variables such as

severity, how many and what type of diagnosis, therapies, placement etc. what I

can share as the list owner here for over a decade is that the majority today is

way different then the majority when my son Tanner was first diagnosed with

" apraxia/dyspraxia it's the same thing " by his SLP back in 1999 after 5 months

of therapy with just about zero progress outside of being able to blow bubbles

and make simple sounds like " Ch " or " ooo " but only if you played this one song

and acted it out but he couldn't put those or any other sounds together and his

only " words " he used after all those months of therapy were " mmmm " and " ma "

Tanner was 2 years 9 months old at the time with an expressive ability that was

greatly behind his receptive- we nicknamed him Harpo because he tried with arm

and body motions to get his points across.

>

> After Tanner got his diagnosis after all those months of therapy 2 times a

week 45 minute session from St Barnabas Medical System's speech department where

he went for private therapy (because not one person told me that Tanner would

qualify for Early Intervention -can you believe that?! And back then I didn't

know all I do today -we paid SOOOOO much for therapy a week)

>

> I jokingly said " OK so he has apraxia or dyspraxia whatever that is. He's

still going to talk right? " silence and blank stare from the SLP. And then she

says " Well. It depends " So I said " What's that supposed to me " it depends "

that got Helen Keller to speak for God's sake! My son isn't deaf for blind! "

>

> Back then I thought apraxia was rare, and back then when I did find a support

group for apraxia the website didn't sound anything like my son because all the

examples of apraxia would be for a child that was talking. We took Tanner to

see Dr. Marilyn Agin a developmental pediatrician who had been an SLP for 7

years prior to medical school who diagnosed Tanner with oral apraxia and said

" which means he probably has verbal apraxia as well. He doesn't know where his

tongue is in his mouth. " Tanner was also diagnosed with hypotonia. He was later

diagnosed with sensory integration dysfunction and I searched for information

about the apraxia and hypotonia and sensory issues all being together in one

child as they were in Tanner and on this other group I belonged to I was told

outside of apraxia the other issues were [OFF TOPIC] (that's what they would add

to the subject of my messages!!!) In addition in this group nobody said a peep

about oral apraxia. Here is my first message ever to any grouplist anywhere

about Tanner -which was before our trip to Dr. Agin- it literally was the very

day he was diagnosed by the SLP.

>

> Subject: Help for Tanner!

> Date: Wed, 10 Mar 1999 01:52:42 -0500

> From: & Glenn <shop-in-service@...>

> apraxia-kids@...

> References: 1

>

>

> Other Parents:

>

> Help! Our two year old son Tanner, who was born July 11, 1996, was

> diagnosed today with apraxia after 4 months of speech therapy at a

> hospital.

>

> Unfortunately, before Tanner was 2, when my husband and I were

> concerned about how quiet he was, our pediatrician wasn't. She

> didn't see any reason for concern at that time since he was always

> very bright and his comprehension was excellent. Undaunted, we

> pushed to get a hearing and speech evaluation done anyway. It was

> like pulling teeth! On a suggestion from Tanner's speech therapist

> to get him evaluated, Tanner was also just recently accepted into the

> early intervention program in our state of NJ. Tanner (whose knick

> name is " Cherub Boy " since that is what he looks like) in every

> other way, looks and acts normal (and has tested above average.)

>

> Since Tanner has been going to speech therapy twice a week, he has

> made great improvements on imitating basic simple sounds.

> Unfortunately, other than some basic sounds he will now mimic if

> prompted, he is not attempting to say words yet. For the most part

> he is quiet and observant. If you say " 1, 2, 3, a, b, c " to Tanner,

> he may try to imitate you, but it will be the inflection of the word

> with the sound " mmmm " . Basically that and pointing is how Tanner

> communicates all the time.

>

> From the time he was a baby, and up until recently, he rarely showed

> any facial expressions. Now, with the small amount of therapy he

> has had, he noticeably smiles frequently and can for the first time

> blow bubbles!

>

> Around the age of one, Tanner had two episodes of Roseola with a

> very high fever each time. Is there any evidence that a high fever

> may cause apraxia?

>

> Even though his hearing is normal, would a school for the deaf which

> is able to teach speech to deaf children be useful to him in

> addition to his other therapies?

>

> We are new to the network and we were wondering if any other parents

> or professionals in this network have any words of wisdom. We e-

> mailed a local support group. It's comforting to know that this

> condition has been resolved successfully by others. From what we've

> read on the subject, most of the children at Tanner's age at least

> try to talk, does Tanner's condition sound severe? Or, maybe a

> better question, was your child, or those you work with, similar at

> some point?

>

> Just one other thing, how many e-mails can one expect to get a day

> with being on the regular list?

>

> Thanks in advance for being out there and sharing! Out of

> curiosity, does

>

> anyone know how many children have aprixia? Tanner's therapist said

> it's not that common.

>

> Best!

>

> and Glenn "

>

> So as much of what I asked about as I got Tanner's diagnosis of oral apraxia,

hypotonia and sensory issues in my almost 100 percent nonverbal child who didn't

fit the classic apraxia profile of this one group so all I asked about was off

topic I was being forced to read adult neurology sites for answers- yes this is

all how it started. Trust me my background prior to this was 100 percent

different as I went to School of Visual Arts in NYC and got a job working in

animation for commercials and half hour specials in NYC and then worked on live

action and toy design- worked with all the major toy manufacturers (most fun -I

worked on commercials for MTV!!) nothing to do with any of this except I always

loved children even before I was a parent.

>

> So when Tanner didn't smile when I played with him like a nut...and trust me

as one who almost took at job at Sesame Street and did work for Jim Henson a

bit- I knew how to be a nut just as any other person that works in animation.

But Tanner would give me this blank look. I nicknamed him the " serious babe

that is going to grow up to be a banker and think I'm a nut "

>

> I applied for Early Intervention for Tanner pretty much a day later after

reading the dismal reports about apraxia from this other group and knowing my

son had some " rare " disorder where (as I told everyone) " He may NEVER speak! "

Tanner was 2 years 9 months when I applied and by the time he was evaluated and

approved for Early Intervention services he had 6 weeks once a week of Early

Intervention therapy with Zimet CCC SLP who worked through Children's

Specialized Hospital in Mountainside NJ. Tanner's Early Intervention goal by

the time he reached 3 years old in 6 weeks " he will look at a ball and say " ba "

because even though Tanner could say " ba " if you played music and acted out

something- he never said it. In fact during the evaluation they couldn't get

Tanner to say a word- I was there and showed them he could say a few sounds.

But receptive -for Tanner the younger he was the higher he tested -at Early

Intervention age with standardized testing my son was a little genius -and with

a sense of humor too. But he did almost everything with virtually zero facial

expressions due to his oral apraxia.

>

> Anyway Tanner was diagnosed and almost from day one of diagnosis- I started a

support group in NJ for this rare condition out of Children's Specialized

Hospital in Mountainside NJ with 's help and the group exploded.

>

> First article about our group from the hospital

> http://www.cherab.org/news/childrenshospitalarticle.html

>

> Which was picked up by The Star Ledger in NJ

> http://www.cherab.org/information/dietaryeffects/StarLedgerarticle.html

>

> Which was read by a director for Inside Edition (spoiler alert -some kids now

grown up to teens and adult with apraxia in this

> http://www.cherabfoundation.org/2001/inside-edition-segment/

>

> And here's the 2 day trip for this one segment we did

> http://www.cherab.org/information/phototrip2000.html

>

> Through in person meetings which we ended up having for years out of St

Barnabas as well as Children's, with a limitation RSVP of only 100 people

allowed per meeting and people standing by the door and in the back of the room

-traveling for up to 6 hours to get to our meeting (no not kidding) I learned

that Tanner was NOT alone. I learned that hypotonia and or sensory issues are

NOT " off topic " as most of the kids with apraxia had one or both as well just

like Tanner as we all met in person and not just on a grouplist. I learned that

apraxia is not just a childhood condition. I learned that apraxia was not rare.

But at this point -yes the way most of the older kids spoke- they sounded like

they were deaf in many cases. I learned that therapy at this point was for

years and years well into their school years and perhaps beyond. And then I

read up on research done by Dr. Stordy a researcher from the UK about

her work with " ADHD, dyslexia and dyspraxia " using fish oils (essential fatty

acids

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-\

autism-and-other-communication-impairments/ and Tanner's first experience on

fish oils including what happened in Early Intervention where he went to over 20

actual words in just a week or so and regressed when we took him off to get

testing for school was written up in a book ironically written by the very same

Dr. Stordy who is the one I read the research about and my co author of The Late

Talker Malcolm Nicholl.

>

> Here is Tanner's story in The LCP Solution

> http://www.cherab.org/information/dietaryeffects/LCPbook.html

>

> On the other grouplist the above story was shocking to say the least and all

these people starting asking me questions...here's my original messages to this

grouplist about fish oil before we were asked to " take it elsewhere " and not

allowed to talk about fish oils at this other group which is how this group

started -and how I learned the hard way that censoring others can hurt our

group. This is why all views are shared here. There is no such thing as [OFF

TOPIC] because we have a spectrum of children represented -and this is how we

learned about gut issues, constipation diet etc. as well.

>

> Re: [APRAX] Help for Tanner!

>

> Date: Wed, 17 Mar 1999 00:28:56 -0500

>

> Hi ,

>

> I just purchased the Efalex at a Rite Aid in NYC today. It was with

> the vitamins, and it says it promotes healthy brain and eye function. I can

let you know if we see a difference. Right now, Tanner is not speaking, except

for basic sounds and " Mama " Things like that. I'll keep you posted though if he

starts reciting War and Peace next week!

>

> Yeah, it is to bad you live so far. There is not that many of us

> out there.

>

> Mom to Dakota 4.8 and Tanner 2.9 (apraxia)

>

>

>

> Subject:

>

> Re: lellow!!!!

>

> Date: Wed, 31 Mar 1999 23:32:13 -0500

>

>

> Remember in the movie Bambi when he is first learning to talk and he

> learns a word, than calls everything that one word until he is corrected-That

is Tanner now! He's walking around for almost 24 hours now saying lellow over

and over. But, he is trying so hard! When you say a new word, he tries to say it

too! Efalex really works !

>

> Hey, how are the little ones feeling today? Are we still on for

> next Wednesday? Someone named who lives close to me from the other

apraxia network (the one from Hawaii) wants to get together too. I told her

about next Wednesday. I was wondering if maybe my house would be good, if I'm in

the middle. Am I? Where does Debi live again? It doesn't matter though, Dakota

doesn't have school next week.

>

> Thanks for the cheer! I'm still in shock at how well this stuff is

> working. People on this list probably think I work for Enfomal or something!

>

> Talk to you later!

>

>

>

> Wow Tanner!!!!!!!!!!! That's FANTASTIC!!!!!!!!!!!! Guess I'll have to run out

and buy this stuff!!!!!!! I am so happy for you, & Glenn, and for you

Tanner!!!! This just made my day!!!!!!!!! Thanks for sharing.... go

Tanner!!!!!!!!! YEA!!!!!!!!!!!!!!!!!!!!!!!!!!!!

>

>

>

> Subject:

>

> Efalex update

>

> Date: Mon, 05 Apr 1999 00:10:09 -0400

>

>

>

>

>

> Hi All and Happy Holidays!

>

> Many of you may have read that Tanner, who is 2.9 years old and has

> verbal apraxia, has been taking the liquid Efalex for the past 2 and

> a half weeks. Other than an expressive language delay, Tanner has no

> other issues. A month ago Tanner was evaluated twice to have the expressive

language ability of a 12 month old both by his therapist,

> and Early Intervention, who just accepted him in.

>

> Could there be a deficiency in children with apraxia? In layman's terms, could

Efalex to an apraxic child be similar to Vitamin C to

> someone with Scurvy? Of course there may not be such a thing as a

> " miracle " pill, but we are so convinced that the changes are from the

> Efalex, that Glenn and I don't want to try the Flax Seed Oil just

> yet.

>

> Tanner has been in speech therapy twice a week for the past 5 months, and both

Glenn and I work with him consistently at home. However, within the past 2 weeks

we have seen such dramatic changes that we both believe it to be as a result of

the Efalex. We don't know if anyone else experienced the changes as soon as we

did with Tanner.

>

> Within 2 weeks he attempted to say I love you, " I, ahh, ooo " (Before then,

most of the time Tanner would say, " mmmm " in the right tones and point, he

didn't attempt speech even with prompting. This is a child that was saying

little more than " Ma Ma " three weeks ago, and wasn't even able to put the sound

" ch " together with the sound " oo " He wasn't even saying " Da Da " !) The other day,

Tanner pointed to the color yellow without any prompting and said, " lellow " .

Tanner is now saying quite a few more words, and he is being consistent with

what words he learns! He's trying to talk all the time now, something he wasn't

doing at all before. As a matter of fact, before 3 weeks ago most of the time if

you tried to get Tanner to say a word, he would stamp his foot and say, " mmm " in

the tone of NO! Now, he loves pointing to, and saying colors. (Purple! Blue!

etc.) His therapist is thrilled with his progress in the past week, it's really

been a remarkable improvement!

>

> Coincidence?

>

> Maybe, but we are hoping to see more improvements just as rapidly.(Putting 2

words together, etc.)

>

> Right now, Tanner still is unable to lift his tongue from the bottom

> of his mouth except by accident. One thing we try is putting peanut

> butter on the on the outside of his mouth on top of his lip and make a game of

it that he has to lick it off. He tries to use his bottom lip to push his tongue

up, but he still can't raise it enough to lick it off. We are curious to see if

that changes soon too. It's only been two and a half weeks for us, but we have

not seen any negative side effects from giving Tanner fish oil other than he

still hates the taste. We have found cooking it in his eggs or letting it soak

into his cereal orpancakes is the only way we can give it to him without any

problems.

>

> Does anyone know about cooking with Efalex? Any suggestion on how to

> have him swallow the pills if we buy them next?

>

> Just one other note for those of you who asked how to respond to

> people that say, " Oh, he'll be talking soon " (We ran into that lots this

weekend with the Holiday, especially because Tanner is starting to " talk! " )

Maybe it's us, but Glenn and I never get mad at people for

> saying this. We feel it's coming from love, not maliciousness. We

> usually say, " We really hope that happens, but we are doing whatever

> therapy we can just in case. " They usually then say, " Oh, of course...So what

is this called again that he has? " We then give

> them a brief description of what Apraxia is and how well Tanner is doing with

therapy.

>

> Anyway, for anyone who cares to know, we give Efalex fish oil two thumbs up.

>

> We'll keep you updated with what happens in the weeks ahead!

>

> and Glenn, Parents to Dakota, 4.8 and Tanner 2.9 (apraxia)

>

> Of course this was long ago when Efalex was still produced by Efamol when it

was first developed by Dr. Stordy...and long before they created ProEFA -which

had to do with me bugging them and us doing parent and professional anecdotal

feedbacks which led to the First Apraxia Conference

http://www.cherab.org/news/scientific.html

>

> But to shorten the rest this is the history of Tanner here

http://www.cherab.org/news/scientific.html which includes the journey with

therapy and ProEFA and then just last year when Tanner was 14 we started NV and

here's how that happened

http://pursuitofresearch.org/the-history-why-nutriiveda-for-therapeutic-use-for-\

autism-apraxia-etc/ and one of Tanner's updates is here

http://pursuitofresearch.org/products/nutriiveda/nutriiveda-testimonials/

>

> So if anyone wonders why I am such a HUGE believer in essential nutrients

-it's because of the last ten years of my life witnessing what essential

nutrients can do and have done to my son and so many others. If you are reading

this and have not checked into fish oils essential fatty acids

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-\

autism-and-other-communication-impairments/ and NV essential amino acids and

nutrients

http://pursuitofresearch.org/products/nutriiveda/nutriiveda-ingredients/ -

please share with your child's doctor

http://pursuitofresearch.org/find-a-professional/ and get started yesterday!!!!

>

> Today Tanner is 14 so I can't tell you up to adult or even HS yet -but Tanner

is mainstreamed and completely independent. He still messes up on speech here

and there but he is very popular, active in basketball and football and other

sports. He is just over 6 foot tall and adorable -and he wants to be a special

education attorney when he grows up -he's been looking into what he needs to do

in college. I've shared just recently with him some of the horrific stories he

has gone through- and he wants to stick up for other children like him. I told

him that if his speech messes up when he is in court who cares? He can prove

that doesn't matter. So I couldn't be prouder of him and know that if Tanner

just like any other child has the ability to do whatever he wants to be.

>

> Tanner is no longer in therapy but once in awhile is overseen by Dr. Renai

Jonas an SLP in Boca (Florida) who monitors his progress.

>

> Because this isn't up to adult -I have 2 other messages to share I will post

next

>

>

> =====

>

[Guest guest]

http://www.pursuitofresearch.org Kate

> > >

> > >

> > > Sooooo-do children ever fully recover from this? what percentage of

children have learning disabilities, need tutors, help reading/writing---trying

to understand and prepare myself since noone can really tell me. I realize

every child is different but some kind of idea would be great. I live in Ga,

does anyone know an amazing SLP for apraxia? How do I know if I have the best

SLP for my son? They all say they work with apraxic children. Anyone have info

on the Atlanta Speech School-any info would be great!!!

> > >

> > > Sammy is 3half and has been in therapy since 1half. He was in private

school last yr with a private facilitator. This year he is in a special needs

program at out local elem school. He has excelled and flourished there! He is

cognitively at 4half. Everyone says he is a good listener, follows direction,

smart, understands just about everything but missing the speech component. He is

keeping up with other typical kids on the playground, he has hypotonia too. I am

glad I can say all these things and brag since I couldn't say most these things

6 months ago! He has 120 minutes of ST on his IEP from school plus 120 minutes

extra private speech I do a week plus aquatic therapy. I'm exhausted to say the

least, also have a 22 month old. I wan to do everything I can to help him. My

husband was a late talker and walker and had learning issues, and know he had to

have tutors and was frsutrated/embarrassed at times. I don't want Sammy to feel

those pains. All help and advise is welcomed!! I can not say how happy I am for

this group, I just wish it cold also be in person and have something locally for

moral support...nonetheless I am grateful.

> > >

> >

>

[Guest guest]

Thank you everyone,I appreciate the welcome! I would love to know what some of

your children " looked like " at 5 or 6. Difficulties in any way that you would

share with me please.

> >

> >

> > Sooooo-do children ever fully recover from this? what percentage of children

have learning disabilities, need tutors, help reading/writing---trying to

understand and prepare myself since noone can really tell me. I realize every

child is different but some kind of idea would be great. I live in Ga, does

anyone know an amazing SLP for apraxia? How do I know if I have the best SLP

for my son? They all say they work with apraxic children. Anyone have info on

the Atlanta Speech School-any info would be great!!!

> >

> > Sammy is 3half and has been in therapy since 1half. He was in private school

last yr with a private facilitator. This year he is in a special needs program

at out local elem school. He has excelled and flourished there! He is

cognitively at 4half. Everyone says he is a good listener, follows direction,

smart, understands just about everything but missing the speech component. He is

keeping up with other typical kids on the playground, he has hypotonia too. I am

glad I can say all these things and brag since I couldn't say most these things

6 months ago! He has 120 minutes of ST on his IEP from school plus 120 minutes

extra private speech I do a week plus aquatic therapy. I'm exhausted to say the

least, also have a 22 month old. I wan to do everything I can to help him. My

husband was a late talker and walker and had learning issues, and know he had to

have tutors and was frsutrated/embarrassed at times. I don't want Sammy to feel

those pains. All help and advise is welcomed!! I can not say how happy I am for

this group, I just wish it cold also be in person and have something locally for

moral support...nonetheless I am grateful.

> >

>

[Guest guest]

How is Tanner now?? I saw the video or the 2 teenagers who received therapies.

Is this what Tanner sounds like now? While it gives me hope that Sammy can

lead a good life and I am now crying that this is what he may sound like. I am

hopefyl, always optimistic and hopefyl BUT need to not bury my head and pretend

like he WILL be ok....I am emotionally exhausted.

From: mykitkate@...

Date: Sun, 27 Mar 2011 16:28:57 +0000

Subject: [ ] Re: what is the future like?

For anyone wondering do not try to print this message out! My printer just ran

out of paper LOL! Wow thank you so much for all of this. The book the late

talker was my lifeline when my son was diagnosed and this letter was what I

printed out to share with my family to explain my son's diagnosis

http://www.cherab.org/information/familiesrelate/letter.html I found this group

which I am forever grateful for and learned about therapies, preschool,

kindergarten, fish oil, NV and yes hope. Even though I doubted everything

including my son's diagnosis I learned things here that nobody else shared with

us but that have greatly helped my son's progress. I don't know how else to say

it other than saying THANK YOU!!! Kate

>

> While nobody can give an exact answer as there are so many variables such as

severity, how many and what type of diagnosis, therapies, placement etc. what I

can share as the list owner here for over a decade is that the majority today is

way different then the majority when my son Tanner was first diagnosed with

" apraxia/dyspraxia it's the same thing " by his SLP back in 1999 after 5 months

of therapy with just about zero progress outside of being able to blow bubbles

and make simple sounds like " Ch " or " ooo " but only if you played this one song

and acted it out but he couldn't put those or any other sounds together and his

only " words " he used after all those months of therapy were " mmmm " and " ma "

Tanner was 2 years 9 months old at the time with an expressive ability that was

greatly behind his receptive- we nicknamed him Harpo because he tried with arm

and body motions to get his points across.

>

> After Tanner got his diagnosis after all those months of therapy 2 times a

week 45 minute session from St Barnabas Medical System's speech department where

he went for private therapy (because not one person told me that Tanner would

qualify for Early Intervention -can you believe that?! And back then I didn't

know all I do today -we paid SOOOOO much for therapy a week)

>

> I jokingly said " OK so he has apraxia or dyspraxia whatever that is. He's

still going to talk right? " silence and blank stare from the SLP. And then she

says " Well. It depends " So I said " What's that supposed to me " it depends " that

got Helen Keller to speak for God's sake! My son isn't deaf for blind! "

>

> Back then I thought apraxia was rare, and back then when I did find a support

group for apraxia the website didn't sound anything like my son because all the

examples of apraxia would be for a child that was talking. We took Tanner to see

Dr. Marilyn Agin a developmental pediatrician who had been an SLP for 7 years

prior to medical school who diagnosed Tanner with oral apraxia and said " which

means he probably has verbal apraxia as well. He doesn't know where his tongue

is in his mouth. " Tanner was also diagnosed with hypotonia. He was later

diagnosed with sensory integration dysfunction and I searched for information

about the apraxia and hypotonia and sensory issues all being together in one

child as they were in Tanner and on this other group I belonged to I was told

outside of apraxia the other issues were [OFF TOPIC] (that's what they would add

to the subject of my messages!!!) In addition in this group nobody said a peep

about oral apraxia. Here is my first message ever to any grouplist anywhere

about Tanner -which was before our trip to Dr. Agin- it literally was the very

day he was diagnosed by the SLP.

>

> Subject: Help for Tanner!

> Date: Wed, 10 Mar 1999 01:52:42 -0500

> From: & Glenn <shop-in-service@...>

> apraxia-kids@...

> References: 1

>

>

> Other Parents:

>

> Help! Our two year old son Tanner, who was born July 11, 1996, was

> diagnosed today with apraxia after 4 months of speech therapy at a

> hospital.

>

> Unfortunately, before Tanner was 2, when my husband and I were

> concerned about how quiet he was, our pediatrician wasn't. She

> didn't see any reason for concern at that time since he was always

> very bright and his comprehension was excellent. Undaunted, we

> pushed to get a hearing and speech evaluation done anyway. It was

> like pulling teeth! On a suggestion from Tanner's speech therapist

> to get him evaluated, Tanner was also just recently accepted into the

> early intervention program in our state of NJ. Tanner (whose knick

> name is " Cherub Boy " since that is what he looks like) in every

> other way, looks and acts normal (and has tested above average.)

>

> Since Tanner has been going to speech therapy twice a week, he has

> made great improvements on imitating basic simple sounds.

> Unfortunately, other than some basic sounds he will now mimic if

> prompted, he is not attempting to say words yet. For the most part

> he is quiet and observant. If you say " 1, 2, 3, a, b, c " to Tanner,

> he may try to imitate you, but it will be the inflection of the word

> with the sound " mmmm " . Basically that and pointing is how Tanner

> communicates all the time.

>

> From the time he was a baby, and up until recently, he rarely showed

> any facial expressions. Now, with the small amount of therapy he

> has had, he noticeably smiles frequently and can for the first time

> blow bubbles!

>

> Around the age of one, Tanner had two episodes of Roseola with a

> very high fever each time. Is there any evidence that a high fever

> may cause apraxia?

>

> Even though his hearing is normal, would a school for the deaf which

> is able to teach speech to deaf children be useful to him in

> addition to his other therapies?

>

> We are new to the network and we were wondering if any other parents

> or professionals in this network have any words of wisdom. We e-

> mailed a local support group. It's comforting to know that this

> condition has been resolved successfully by others. From what we've

> read on the subject, most of the children at Tanner's age at least

> try to talk, does Tanner's condition sound severe? Or, maybe a

> better question, was your child, or those you work with, similar at

> some point?

>

> Just one other thing, how many e-mails can one expect to get a day

> with being on the regular list?

>

> Thanks in advance for being out there and sharing! Out of

> curiosity, does

>

> anyone know how many children have aprixia? Tanner's therapist said

> it's not that common.

>

> Best!

>

> and Glenn "

>

> So as much of what I asked about as I got Tanner's diagnosis of oral apraxia,

hypotonia and sensory issues in my almost 100 percent nonverbal child who didn't

fit the classic apraxia profile of this one group so all I asked about was off

topic I was being forced to read adult neurology sites for answers- yes this is

all how it started. Trust me my background prior to this was 100 percent

different as I went to School of Visual Arts in NYC and got a job working in

animation for commercials and half hour specials in NYC and then worked on live

action and toy design- worked with all the major toy manufacturers (most fun -I

worked on commercials for MTV!!) nothing to do with any of this except I always

loved children even before I was a parent.

>

> So when Tanner didn't smile when I played with him like a nut...and trust me

as one who almost took at job at Sesame Street and did work for Jim Henson a

bit- I knew how to be a nut just as any other person that works in animation.

But Tanner would give me this blank look. I nicknamed him the " serious babe that

is going to grow up to be a banker and think I'm a nut "

>

> I applied for Early Intervention for Tanner pretty much a day later after

reading the dismal reports about apraxia from this other group and knowing my

son had some " rare " disorder where (as I told everyone) " He may NEVER speak! "

Tanner was 2 years 9 months when I applied and by the time he was evaluated and

approved for Early Intervention services he had 6 weeks once a week of Early

Intervention therapy with Zimet CCC SLP who worked through Children's

Specialized Hospital in Mountainside NJ. Tanner's Early Intervention goal by the

time he reached 3 years old in 6 weeks " he will look at a ball and say " ba "

because even though Tanner could say " ba " if you played music and acted out

something- he never said it. In fact during the evaluation they couldn't get

Tanner to say a word- I was there and showed them he could say a few sounds. But

receptive -for Tanner the younger he was the higher he tested -at Early

Intervention age with standardized testing my son was a little genius -and with

a sense of humor too. But he did almost everything with virtually zero facial

expressions due to his oral apraxia.

>

> Anyway Tanner was diagnosed and almost from day one of diagnosis- I started a

support group in NJ for this rare condition out of Children's Specialized

Hospital in Mountainside NJ with 's help and the group exploded.

>

> First article about our group from the hospital

> http://www.cherab.org/news/childrenshospitalarticle.html

>

> Which was picked up by The Star Ledger in NJ

> http://www.cherab.org/information/dietaryeffects/StarLedgerarticle.html

>

> Which was read by a director for Inside Edition (spoiler alert -some kids now

grown up to teens and adult with apraxia in this

> http://www.cherabfoundation.org/2001/inside-edition-segment/

>

> And here's the 2 day trip for this one segment we did

> http://www.cherab.org/information/phototrip2000.html

>

> Through in person meetings which we ended up having for years out of St

Barnabas as well as Children's, with a limitation RSVP of only 100 people

allowed per meeting and people standing by the door and in the back of the room

-traveling for up to 6 hours to get to our meeting (no not kidding) I learned

that Tanner was NOT alone. I learned that hypotonia and or sensory issues are

NOT " off topic " as most of the kids with apraxia had one or both as well just

like Tanner as we all met in person and not just on a grouplist. I learned that

apraxia is not just a childhood condition. I learned that apraxia was not rare.

But at this point -yes the way most of the older kids spoke- they sounded like

they were deaf in many cases. I learned that therapy at this point was for years

and years well into their school years and perhaps beyond. And then I read up on

research done by Dr. Stordy a researcher from the UK about her work

with " ADHD, dyslexia and dyspraxia " using fish oils (essential fatty acids

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-\

autism-and-other-communication-impairments/ and Tanner's first experience on

fish oils including what happened in Early Intervention where he went to over 20

actual words in just a week or so and regressed when we took him off to get

testing for school was written up in a book ironically written by the very same

Dr. Stordy who is the one I read the research about and my co author of The Late

Talker Malcolm Nicholl.

>

> Here is Tanner's story in The LCP Solution

> http://www.cherab.org/information/dietaryeffects/LCPbook.html

>

> On the other grouplist the above story was shocking to say the least and all

these people starting asking me questions...here's my original messages to this

grouplist about fish oil before we were asked to " take it elsewhere " and not

allowed to talk about fish oils at this other group which is how this group

started -and how I learned the hard way that censoring others can hurt our

group. This is why all views are shared here. There is no such thing as [OFF

TOPIC] because we have a spectrum of children represented -and this is how we

learned about gut issues, constipation diet etc. as well.

>

> Re: [APRAX] Help for Tanner!

>

> Date: Wed, 17 Mar 1999 00:28:56 -0500

>

> Hi ,

>

> I just purchased the Efalex at a Rite Aid in NYC today. It was with

> the vitamins, and it says it promotes healthy brain and eye function. I can

let you know if we see a difference. Right now, Tanner is not speaking, except

for basic sounds and " Mama " Things like that. I'll keep you posted though if he

starts reciting War and Peace next week!

>

> Yeah, it is to bad you live so far. There is not that many of us

> out there.

>

> Mom to Dakota 4.8 and Tanner 2.9 (apraxia)

>

>

>

> Subject:

>

> Re: lellow!!!!

>

> Date: Wed, 31 Mar 1999 23:32:13 -0500

>

>

> Remember in the movie Bambi when he is first learning to talk and he

> learns a word, than calls everything that one word until he is corrected-That

is Tanner now! He's walking around for almost 24 hours now saying lellow over

and over. But, he is trying so hard! When you say a new word, he tries to say it

too! Efalex really works !

>

> Hey, how are the little ones feeling today? Are we still on for

> next Wednesday? Someone named who lives close to me from the other

apraxia network (the one from Hawaii) wants to get together too. I told her

about next Wednesday. I was wondering if maybe my house would be good, if I'm in

the middle. Am I? Where does Debi live again? It doesn't matter though, Dakota

doesn't have school next week.

>

> Thanks for the cheer! I'm still in shock at how well this stuff is

> working. People on this list probably think I work for Enfomal or something!

>

> Talk to you later!

>

>

>

> Wow Tanner!!!!!!!!!!! That's FANTASTIC!!!!!!!!!!!! Guess I'll have to run out

and buy this stuff!!!!!!! I am so happy for you, & Glenn, and for you

Tanner!!!! This just made my day!!!!!!!!! Thanks for sharing.... go

Tanner!!!!!!!!! YEA!!!!!!!!!!!!!!!!!!!!!!!!!!!!

>

>

>

> Subject:

>

> Efalex update

>

> Date: Mon, 05 Apr 1999 00:10:09 -0400

>

>

>

>

>

> Hi All and Happy Holidays!

>

> Many of you may have read that Tanner, who is 2.9 years old and has

> verbal apraxia, has been taking the liquid Efalex for the past 2 and

> a half weeks. Other than an expressive language delay, Tanner has no

> other issues. A month ago Tanner was evaluated twice to have the expressive

language ability of a 12 month old both by his therapist,

> and Early Intervention, who just accepted him in.

>

> Could there be a deficiency in children with apraxia? In layman's terms, could

Efalex to an apraxic child be similar to Vitamin C to

> someone with Scurvy? Of course there may not be such a thing as a

> " miracle " pill, but we are so convinced that the changes are from the

> Efalex, that Glenn and I don't want to try the Flax Seed Oil just

> yet.

>

> Tanner has been in speech therapy twice a week for the past 5 months, and both

Glenn and I work with him consistently at home. However, within the past 2 weeks

we have seen such dramatic changes that we both believe it to be as a result of

the Efalex. We don't know if anyone else experienced the changes as soon as we

did with Tanner.

>

> Within 2 weeks he attempted to say I love you, " I, ahh, ooo " (Before then,

most of the time Tanner would say, " mmmm " in the right tones and point, he

didn't attempt speech even with prompting. This is a child that was saying

little more than " Ma Ma " three weeks ago, and wasn't even able to put the sound

" ch " together with the sound " oo " He wasn't even saying " Da Da " !) The other day,

Tanner pointed to the color yellow without any prompting and said, " lellow " .

Tanner is now saying quite a few more words, and he is being consistent with

what words he learns! He's trying to talk all the time now, something he wasn't

doing at all before. As a matter of fact, before 3 weeks ago most of the time if

you tried to get Tanner to say a word, he would stamp his foot and say, " mmm " in

the tone of NO! Now, he loves pointing to, and saying colors. (Purple! Blue!

etc.) His therapist is thrilled with his progress in the past week, it's really

been a remarkable improvement!

>

> Coincidence?

>

> Maybe, but we are hoping to see more improvements just as rapidly.(Putting 2

words together, etc.)

>

> Right now, Tanner still is unable to lift his tongue from the bottom

> of his mouth except by accident. One thing we try is putting peanut

> butter on the on the outside of his mouth on top of his lip and make a game of

it that he has to lick it off. He tries to use his bottom lip to push his tongue

up, but he still can't raise it enough to lick it off. We are curious to see if

that changes soon too. It's only been two and a half weeks for us, but we have

not seen any negative side effects from giving Tanner fish oil other than he

still hates the taste. We have found cooking it in his eggs or letting it soak

into his cereal orpancakes is the only way we can give it to him without any

problems.

>

> Does anyone know about cooking with Efalex? Any suggestion on how to

> have him swallow the pills if we buy them next?

>

> Just one other note for those of you who asked how to respond to

> people that say, " Oh, he'll be talking soon " (We ran into that lots this

weekend with the Holiday, especially because Tanner is starting to " talk! " )

Maybe it's us, but Glenn and I never get mad at people for

> saying this. We feel it's coming from love, not maliciousness. We

> usually say, " We really hope that happens, but we are doing whatever

> therapy we can just in case. " They usually then say, " Oh, of course...So what

is this called again that he has? " We then give

> them a brief description of what Apraxia is and how well Tanner is doing with

therapy.

>

> Anyway, for anyone who cares to know, we give Efalex fish oil two thumbs up.

>

> We'll keep you updated with what happens in the weeks ahead!

>

> and Glenn, Parents to Dakota, 4.8 and Tanner 2.9 (apraxia)

>

> Of course this was long ago when Efalex was still produced by Efamol when it

was first developed by Dr. Stordy...and long before they created ProEFA -which

had to do with me bugging them and us doing parent and professional anecdotal

feedbacks which led to the First Apraxia Conference

http://www.cherab.org/news/scientific.html

>

> But to shorten the rest this is the history of Tanner here

http://www.cherab.org/news/scientific.html which includes the journey with

therapy and ProEFA and then just last year when Tanner was 14 we started NV and

here's how that happened

http://pursuitofresearch.org/the-history-why-nutriiveda-for-therapeutic-use-for-\

autism-apraxia-etc/ and one of Tanner's updates is here

http://pursuitofresearch.org/products/nutriiveda/nutriiveda-testimonials/

>

> So if anyone wonders why I am such a HUGE believer in essential nutrients

-it's because of the last ten years of my life witnessing what essential

nutrients can do and have done to my son and so many others. If you are reading

this and have not checked into fish oils essential fatty acids

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-\

autism-and-other-communication-impairments/ and NV essential amino acids and

nutrients

http://pursuitofresearch.org/products/nutriiveda/nutriiveda-ingredients/ -

please share with your child's doctor

http://pursuitofresearch.org/find-a-professional/ and get started yesterday!!!!

>

> Today Tanner is 14 so I can't tell you up to adult or even HS yet -but Tanner

is mainstreamed and completely independent. He still messes up on speech here

and there but he is very popular, active in basketball and football and other

sports. He is just over 6 foot tall and adorable -and he wants to be a special

education attorney when he grows up -he's been looking into what he needs to do

in college. I've shared just recently with him some of the horrific stories he

has gone through- and he wants to stick up for other children like him. I told

him that if his speech messes up when he is in court who cares? He can prove

that doesn't matter. So I couldn't be prouder of him and know that if Tanner

just like any other child has the ability to do whatever he wants to be.

>

> Tanner is no longer in therapy but once in awhile is overseen by Dr. Renai

Jonas an SLP in Boca (Florida) who monitors his progress.

>

> Because this isn't up to adult -I have 2 other messages to share I will post

next

>

>

> =====

>

[Guest guest]

Tanner before fish oils had a monotone sound for the few sounds he did make with

prompting/songs/pantomime/standing on our heads or whatever else we had to do to

get Tanner to say anything but " mmmm " and " ma " . I'll never forget the first

time he said moo in speech therapy it was very long drawn out

mmmmmmmmmmmmmmmmmmm (the whole time his lips were pressed together during this

first part which did go on awhile) and then he opened his mouth and bit and said

" oooooooooooooooooohhhhhhhhhhhhhhhhh " (sounded like oh the whole time) and I so

remember thinking " that does not sound normal! " That was an attempt to say a

word as close to " ma " as you can possibly get -but he almost made moo sound like

ma -and again he did sound like he was deaf when he said it.

When he started talking quickly once on fish oils however -the speech came in

normal. The first time he said " lellow " and I almost fell over -it was very

clear and while he wasn't able at that point to say the back " y " sound- he

clearly said " lellow " again and again and sounded adorable -like Bambi as I said

years ago.

He remained in speech inflections normal. He is not at all monotone and does

not at all sound deaf anymore -you can hear him here

http://www.debtsmart.net/talk/tanner.html from when he was 11. His speech

recently since being on NV has much improved in it's sophistication.

Tanner did do an update for the page- I have to check with when it will be

up -but Tanner now sounds more like a man even though he's only 14 -his voice

has deepened. Most times he sounds just like anyone else, sometimes he'll say

things a bit slower so he doesn't mess up. But even though he's " therapied up "

as some SLPs have called him -he has every strategy in the book down -he

occasionally does still mess up in speech especially if he's stressed, tired or

sick- and fortunately rarely sick. But he also messes up if he goes days

without his fish oils!!

Tanner's now fully independent and makes his own breakfast -but while he's so

good at taking NV every day which he makes himself - he tends to forget his fish

oils so after a few days he's get bumpy.

How do other relate. The best way to share is through strangers. He plays Xbox

live which I highly recommend gaming for these kids for social reasons because

it's one of the way boys play today -and Live has helped in that Tanner has no

issues talking on the phone because that's kind of what Live is nonstop. Yes my

husband and I were nervous to start with him on Live but my boys have all the

rules down for privacy -they started with just neighborhood and school friends

but today both Dakota and Tanner are playing games with friends they have made

from all over through Live. You can choose who to play with and over the years

a few times someone will say something about his speech if he messes up and he

just calmly says " I have apraxia which sometimes messes up my speech " and they

just go on playing from there. He is not at all ashamed of it and actually

throughout the years he hasn't been teased anymore than anyone - which can also

be because he's always been taller and larger than his classmates and now he

towers over everyone -even the teachers at just over 6 foot! You would know

he's into sports and football even if you didn't know him just to look at him

-put it that way.

I just uploaded some newer photos of Tanner and just noticed something super

interesting!!! These photos here are about 3 months after starting NV and

you'll notice his older brother Dakota who is 2 years older is still taller than

him so at this point he had to be under 5 10 but still tall for 13

/photos/album/778734714/pic/lis\

t In these pictures Tanner is 13 and Dakota is 15 -they both have summer

birthdays.

These pictures are from July of 2010 when we went up north for my niece's

wedding so Tanner has now been on NV for 8 months and you'll note he's now

Tanner than his brother (who didn't start taking it right away and is

inconsistent in taking it unlike Tanner- but Dakota grew from 5 10 to 6 foot in

months too -Tanner went a bit taller.

/photos/album/116272360/pic/lis\

t Pretty cool. Anyway yes have to get Tanner's talking page update up because

his speech is far more sophisticated since he's been on NV. Both growth and

sophistication of speech are part of what NV does

http://pursuitofresearch.org/pursuit.html The fish oils as you can tell however

even they alone help bring in the speech.

You do cry more when they are little because it's the unknown -but that's why I

share that in this group with parents like you who advocate and learn how to

best help your child they do overcome. There are so many examples of that. Did

you see the video before and after of in speech? This is just a few

months of NV

http://pursuitofresearch.org/2010/11/22/apraxia-road-to-recovery-before-and-afte\

r-videos/ -I do hope more parents document because we now have so many stories

like this in writing but so few take it serious enough to document it (Thank you

Gretchen!!!!) Take it serious -essential nutrients for just about all will take

away the tears and bring hope- and quickly!! When I say there is hope- I SO

mean it !!!

If you want to speak with Tanner he would for sure talk to you. Email me at

lisa@... and let me know. He wants to help other kids and he knows that

sometimes parents talk to him and they start crying but not because he can't

talk but because he's talking so well. He understands that he is a success,,

and he also understands that he has to sometimes work a bit harder to overcome

his impairment. But don't we all have to work harder at one thing or another?

=====

[Guest guest]

PS just wanted to add that on Tanner's talking page

http://www.debtsmart.net/talk/tanner.html the first time he's recorded at the

Christmas party 1999 at Children's Specialized Hospital for our in person

support group was after over 8 months on fish oils (he started fish oils April

5th 1999) I wish I had a recording of him prior to fish oils!!!

=====

[Guest guest]

, first let me say, thank you. Thank you for taking so many hours of your

day to help people like me. I can not tell you enough how much i appreciate

this.

I am so impressed with Tanner's voice video. WOW! I am a New Yorker/Miami

Jewish neurotic mom (worry has always been my middle name) I have fellow

worriers in my family so don't get to cry, let out anything that i am thinking

or discuss since they will feel sorry, worry yada yada. My husband thinks Sammy

will be just fine and lets me vent, but tells me I am doing everything I can and

he'll be okay. My friends can NOT understand any of this. Special needs moms

in the area, look at Sammy as if he is just fine. (looking at him, noone has any

clue) So they probably think i am nuts and he will be just fine in the future.

So I feel like I am not understood by typical and special needs mom. I feel

like I lost at times. I see other kids at aquatic therapy of the children's

hospital and life gets into full prospective for me, I am SOO grateful for what

I have. Those kids are so much worse and really have little future of an

independant healthy life. Yet, I can't seem to stop worrying, crying. I feel

really alone, noone understands what I/we go through on a daily basis. Let me

add, I live in Ga the last few years, so I have NO daily support system either.

My husband is rarely home since he is always working, so it is ALL ME!

Sammy is smart, SWEET AS SUGAR, teacher's pet, good listener, follows direction,

gives hugs and kisses, agreeable, motivated, keeps up with other typical kids-so

everyone probably thinks I am being dramatic. (again, jewish, so maybe)

Just being to write this I feel a relief. I know others have got to feel some

of this. It's funny, my kids isn't autistic or has downs or terminally ill, so

I feel like I am the crazy mother.

When did you start the NV? Did you create this with doctors and just endorse it?

You do this and fish oil? Is NV tolerable? Which flavor is better? Sammy is

a picky eater as is, so giving him anything is a mission. Why NV and not Speech

Nutrients?

How do I know if I am getting him the right SLP's? Should I have someone

monitor him as well? Where, who, what??? HELP!

If he is learning and growing in a special needs public school program for 3/4

yr olds, should I consider a private speech school? His bday is 3 weeks from

where he would have been kept behind. I am considering giving him an extra year

in the public or private school, since he is an August bday and may need the

help, thoughts on this?

Thank you, thank you!

>

> Tanner before fish oils had a monotone sound for the few sounds he did make

with prompting/songs/pantomime/standing on our heads or whatever else we had to

do to get Tanner to say anything but " mmmm " and " ma " . I'll never forget the

first time he said moo in speech therapy it was very long drawn out

mmmmmmmmmmmmmmmmmmm (the whole time his lips were pressed together during this

first part which did go on awhile) and then he opened his mouth and bit and said

" oooooooooooooooooohhhhhhhhhhhhhhhhh " (sounded like oh the whole time) and I so

remember thinking " that does not sound normal! " That was an attempt to say a

word as close to " ma " as you can possibly get -but he almost made moo sound like

ma -and again he did sound like he was deaf when he said it.

>

> When he started talking quickly once on fish oils however -the speech came in

normal. The first time he said " lellow " and I almost fell over -it was very

clear and while he wasn't able at that point to say the back " y " sound- he

clearly said " lellow " again and again and sounded adorable -like Bambi as I said

years ago.

>

> He remained in speech inflections normal. He is not at all monotone and does

not at all sound deaf anymore -you can hear him here

http://www.debtsmart.net/talk/tanner.html from when he was 11. His speech

recently since being on NV has much improved in it's sophistication.

>

> Tanner did do an update for the page- I have to check with when it will

be up -but Tanner now sounds more like a man even though he's only 14 -his voice

has deepened. Most times he sounds just like anyone else, sometimes he'll say

things a bit slower so he doesn't mess up. But even though he's " therapied up "

as some SLPs have called him -he has every strategy in the book down -he

occasionally does still mess up in speech especially if he's stressed, tired or

sick- and fortunately rarely sick. But he also messes up if he goes days

without his fish oils!!

>

> Tanner's now fully independent and makes his own breakfast -but while he's so

good at taking NV every day which he makes himself - he tends to forget his fish

oils so after a few days he's get bumpy.

>

> How do other relate. The best way to share is through strangers. He plays

Xbox live which I highly recommend gaming for these kids for social reasons

because it's one of the way boys play today -and Live has helped in that Tanner

has no issues talking on the phone because that's kind of what Live is nonstop.

Yes my husband and I were nervous to start with him on Live but my boys have all

the rules down for privacy -they started with just neighborhood and school

friends but today both Dakota and Tanner are playing games with friends they

have made from all over through Live. You can choose who to play with and over

the years a few times someone will say something about his speech if he messes

up and he just calmly says " I have apraxia which sometimes messes up my speech "

and they just go on playing from there. He is not at all ashamed of it and

actually throughout the years he hasn't been teased anymore than anyone - which

can also be because he's always been taller and larger than his classmates and

now he towers over everyone -even the teachers at just over 6 foot! You would

know he's into sports and football even if you didn't know him just to look at

him -put it that way.

>

>

> I just uploaded some newer photos of Tanner and just noticed something super

interesting!!! These photos here are about 3 months after starting NV and

you'll notice his older brother Dakota who is 2 years older is still taller than

him so at this point he had to be under 5 10 but still tall for 13

/photos/album/778734714/pic/lis\

t In these pictures Tanner is 13 and Dakota is 15 -they both have summer

birthdays.

>

> These pictures are from July of 2010 when we went up north for my niece's

wedding so Tanner has now been on NV for 8 months and you'll note he's now

Tanner than his brother (who didn't start taking it right away and is

inconsistent in taking it unlike Tanner- but Dakota grew from 5 10 to 6 foot in

months too -Tanner went a bit taller.

/photos/album/116272360/pic/lis\

t Pretty cool. Anyway yes have to get Tanner's talking page update up because

his speech is far more sophisticated since he's been on NV. Both growth and

sophistication of speech are part of what NV does

http://pursuitofresearch.org/pursuit.html The fish oils as you can tell however

even they alone help bring in the speech.

>

> You do cry more when they are little because it's the unknown -but that's why

I share that in this group with parents like you who advocate and learn how to

best help your child they do overcome. There are so many examples of that. Did

you see the video before and after of in speech? This is just a few

months of NV

http://pursuitofresearch.org/2010/11/22/apraxia-road-to-recovery-before-and-afte\

r-videos/ -I do hope more parents document because we now have so many stories

like this in writing but so few take it serious enough to document it (Thank you

Gretchen!!!!) Take it serious -essential nutrients for just about all will take

away the tears and bring hope- and quickly!! When I say there is hope- I SO

mean it !!!

>

> If you want to speak with Tanner he would for sure talk to you. Email me at

lisa@... and let me know. He wants to help other kids and he knows that

sometimes parents talk to him and they start crying but not because he can't

talk but because he's talking so well. He understands that he is a success,,

and he also understands that he has to sometimes work a bit harder to overcome

his impairment. But don't we all have to work harder at one thing or another?

>

>

> =====

>

[Guest guest]

I'm emailing with separately- she lives not far from me. I know the tears

and the sleepless nights VERY well- and the well intended saying " he's fine. "

But, what is helpful is to know a few other kids with apraxia who are speaking

just fine. And yes, perspective is huge. We're so grateful that this is all our

child has- it could be SO much worse and I know kids who have it so much worse.

It does help to think that way.

Thanks for everything. -marie

________________________________

From: savyrach <savyrach@...>

Sent: Sun, March 27, 2011 7:31:54 PM

Subject: [ ] Re: what is the future like?

, first let me say, thank you. Thank you for taking so many hours of your

day to help people like me. I can not tell you enough how much i appreciate

this.

I am so impressed with Tanner's voice video. WOW! I am a New Yorker/Miami

Jewish neurotic mom (worry has always been my middle name) I have fellow

worriers in my family so don't get to cry, let out anything that i am thinking

or discuss since they will feel sorry, worry yada yada. My husband thinks Sammy

will be just fine and lets me vent, but tells me I am doing everything I can and

he'll be okay. My friends can NOT understand any of this. Special needs moms

in the area, look at Sammy as if he is just fine. (looking at him, noone has any

clue) So they probably think i am nuts and he will be just fine in the future.

So I feel like I am not understood by typical and special needs mom. I feel

like I lost at times. I see other kids at aquatic therapy of the children's

hospital and life gets into full prospective for me, I am SOO grateful for what

I have. Those kids are so much worse and really have little future of an

independant healthy life. Yet, I can't seem to stop worrying, crying. I feel

really alone, noone understands what I/we go through on a daily basis. Let me

add, I live in Ga the last few years, so I have NO daily support system either.

My husband is rarely home since he is always working, so it is ALL ME!

Sammy is smart, SWEET AS SUGAR, teacher's pet, good listener, follows direction,

gives hugs and kisses, agreeable, motivated, keeps up with other typical kids-so

everyone probably thinks I am being dramatic. (again, jewish, so maybe)

Just being to write this I feel a relief. I know others have got to feel some

of this. It's funny, my kids isn't autistic or has downs or terminally ill, so

I feel like I am the crazy mother.

When did you start the NV? Did you create this with doctors and just endorse it?

You do this and fish oil? Is NV tolerable? Which flavor is better? Sammy is

a picky eater as is, so giving him anything is a mission. Why NV and not Speech

Nutrients?

How do I know if I am getting him the right SLP's? Should I have someone

monitor him as well? Where, who, what??? HELP!

If he is learning and growing in a special needs public school program for 3/4

yr olds, should I consider a private speech school? His bday is 3 weeks from

where he would have been kept behind. I am considering giving him an extra year

in the public or private school, since he is an August bday and may need the

help, thoughts on this?

Thank you, thank you!

>

> Tanner before fish oils had a monotone sound for the few sounds he did make

>with prompting/songs/pantomime/standing on our heads or whatever else we had to

>do to get Tanner to say anything but " mmmm " and " ma " . I'll never forget the

>first time he said moo in speech therapy it was very long drawn out

>mmmmmmmmmmmmmmmmmmm (the whole time his lips were pressed together during this

>first part which did go on awhile) and then he opened his mouth and bit and

said

> " oooooooooooooooooohhhhhhhhhhhhhhhhh " (sounded like oh the whole time) and I

so

>remember thinking " that does not sound normal! " That was an attempt to say a

>word as close to " ma " as you can possibly get -but he almost made moo sound

like

>ma -and again he did sound like he was deaf when he said it.

>

> When he started talking quickly once on fish oils however -the speech came in

>normal. The first time he said " lellow " and I almost fell over -it was very

>clear and while he wasn't able at that point to say the back " y " sound- he

>clearly said " lellow " again and again and sounded adorable -like Bambi as I

said

>years ago.

>

> He remained in speech inflections normal. He is not at all monotone and does

>not at all sound deaf anymore -you can hear him here

>http://www.debtsmart.net/talk/tanner.html from when he was 11. His speech

>recently since being on NV has much improved in it's sophistication.

>

> Tanner did do an update for the page- I have to check with when it will

>be up -but Tanner now sounds more like a man even though he's only 14 -his

voice

>has deepened. Most times he sounds just like anyone else, sometimes he'll say

>things a bit slower so he doesn't mess up. But even though he's " therapied up "

>as some SLPs have called him -he has every strategy in the book down -he

>occasionally does still mess up in speech especially if he's stressed, tired or

>sick- and fortunately rarely sick. But he also messes up if he goes days

>without his fish oils!!

>

> Tanner's now fully independent and makes his own breakfast -but while he's so

>good at taking NV every day which he makes himself - he tends to forget his

fish

>oils so after a few days he's get bumpy.

>

> How do other relate. The best way to share is through strangers. He plays

>Xbox live which I highly recommend gaming for these kids for social reasons

>because it's one of the way boys play today -and Live has helped in that Tanner

>has no issues talking on the phone because that's kind of what Live is nonstop.

>Yes my husband and I were nervous to start with him on Live but my boys have

all

>the rules down for privacy -they started with just neighborhood and school

>friends but today both Dakota and Tanner are playing games with friends they

>have made from all over through Live. You can choose who to play with and over

>the years a few times someone will say something about his speech if he messes

>up and he just calmly says " I have apraxia which sometimes messes up my speech "

>and they just go on playing from there. He is not at all ashamed of it and

>actually throughout the years he hasn't been teased anymore than anyone - which

>can also be because he's always been taller and larger than his classmates and

>now he towers over everyone -even the teachers at just over 6 foot! You would

>know he's into sports and football even if you didn't know him just to look at

>him -put it that way.

>

>

> I just uploaded some newer photos of Tanner and just noticed something super

>interesting!!! These photos here are about 3 months after starting NV and

>you'll notice his older brother Dakota who is 2 years older is still taller

than

>him so at this point he had to be under 5 10 but still tall for 13

> /photos/album/778734714/pic/li\

st

> In these pictures Tanner is 13 and Dakota is 15 -they both have summer

>birthdays.

>

> These pictures are from July of 2010 when we went up north for my niece's

>wedding so Tanner has now been on NV for 8 months and you'll note he's now

>Tanner than his brother (who didn't start taking it right away and is

>inconsistent in taking it unlike Tanner- but Dakota grew from 5 10 to 6 foot in

>months too -Tanner went a bit taller.

> /photos/album/116272360/pic/li\

st

> Pretty cool. Anyway yes have to get Tanner's talking page update up because

>his speech is far more sophisticated since he's been on NV. Both growth and

>sophistication of speech are part of what NV does

>http://pursuitofresearch.org/pursuit.html The fish oils as you can tell however

>even they alone help bring in the speech.

>

> You do cry more when they are little because it's the unknown -but that's why

I

>share that in this group with parents like you who advocate and learn how to

>best help your child they do overcome. There are so many examples of that.

Did

>you see the video before and after of in speech? This is just a few

>months of NV

>http://pursuitofresearch.org/2010/11/22/apraxia-road-to-recovery-before-and-aft\

er-videos/

> -I do hope more parents document because we now have so many stories like this

>in writing but so few take it serious enough to document it (Thank you

>Gretchen!!!!) Take it serious -essential nutrients for just about all will

take

>away the tears and bring hope- and quickly!! When I say there is hope- I SO

>mean it !!!

>

> If you want to speak with Tanner he would for sure talk to you. Email me at

>lisa@... and let me know. He wants to help other kids and he knows that

>sometimes parents talk to him and they start crying but not because he can't

>talk but because he's talking so well. He understands that he is a success,,

>and he also understands that he has to sometimes work a bit harder to overcome

>his impairment. But don't we all have to work harder at one thing or another?

>

>

> =====

>

[Guest guest]

I don't know if you read my book The Late Talker -but what you are going

through is perfectly normal. You can go to Google books and just put in The

Late Talker and read some of it online for free.

I also can tell you for a fact that sometimes less severe issues can be more

stressful to deal with. My first son had life threatening injuries from a

traumatic delivery which created brain, head and neck trauma and he had eating

and breathing problems and had to be watched constantly as he was high risk for

SIDS and at times even while he was awake he would just stop breathing -that

unlike Tanner who's issues with apraxia were less serious- I was surrounded by

support and professionals that were able to tell ME what to do to help my son

Dakota. Insurance companies didn't fight me to provide services. In many ways

that lowers the frustration.

In Tanner's case I was constantly awake at night on the computer researching

adult neurology websites as I wrote earlier trying to figure out what was going

on with Tanner and nobody had the answer for me. He went through all the

genetic testing -we took him to doctor after doctor after doctor in NJ and NY

-and yes Dr. Agin diagnosed him and he got that -but the school professionals

didn't know what apraxia was back then in 1999 -and even at my support meetings

-true story -SLPs used to argue if apraxia was a " real " diagnosis. Some said it

was made up so SLPs can make more money off of desperate parents. And even

those that diagnosed apraxia -even some so called apraxia experts -even today-

don't recognize that apraxia today is not just a speech issue and typically

presents multifaceted. And then there is the confusion over what to call it -I

don't care what it's called as long as it's as short as possible and doesn't

have the word " childhood " or " developmental " associated with it as I also know

it's not just a childhood condition even if it starts there. There is hope as

the children with apraxia today can overcome -but it's like saying a kid that

needs glasses has childhood visual problems of the eyes...but at least for most

visual disorders down the road Lasik may resolve the issue.

So to me that is the added whammy of having what is called a silent disability

(pardon the pun) So while yes we should be thankful that it's not worse there is

nothing wrong with having a pity party when you are alone and letting yourself

cry and talk it out. There are stages to getting to acceptance and being sad is

on the way -expressing it is better.

And you are so right -late talking is not taken serious when they are preschool

age...and then same child if they grow quick or around the age of 3 give or take

-all of a sudden the peanut gallery public goes from " oh he's just a late talker

give him time " to " what's wrong with him? " And just so you aren't caught off

guard with that question as the first time you hear it you are with your child

and typically dumbstruck that the bagger at the supermarket has just had the

nerve to ask this question after trying to get your child to say " hello " ...just

smile and say " He's learning to talk and he's doing great " and then ignore them

and look at your child and do simple sign for eat or drink and ask them if they

are hungry or thirsty -you only have to do one before you'll hear " ooooh " from

the person that asked because they'll assume your child is deaf -but they will

also shut up.

As far as husbands -yes that's pretty much par for the course that they are the

ones that say " he'll be fine " but who knows how much of that is just image and

how much is just the male or father nature? I do know that when working

together it's a good balance because you don't want to drive yourself crazy with

worry as most moms do and you don't want to be laid back to doing nothing

either. Not saying that Dads would be that laid back -but just saying the

balance is good.

There is a point after 3 years old that all accept there is probably some reason

for the delay in speech beyond developmental -but some don't really worry until

4 or even 5 before that happens. Not as often do people wait that long today-

but more times today parents don't realize if their child is misdiagnosed and

they remain nonverbal with inappropriate therapies.

About frustration -the following is just one clip from The Late Talker book. If

you are on Facebook look for me -

[Guest guest]

When my 12yo son was 2yo, I told the Pediatrician that he was only speaking less

than 10 words and had developed his own signs to communicate with me. His

response? If he's NOT talking by K, we'll talk about doing something about him!!

I went home and told a friend of mine that and she's the one who told me about

EI in NY. I made that phone call, and also changed Ped's the next day!!

This was three years before Tara was even born! TG--I was much more prepared

knowing the help that was out there and I dont need help from PEd's in any way

to get it. All I had to do was let THEM know that she's in EI now, we're taking

care of it, I'll let you know what scripts we need for her therapy! Ha!

Ps , I'm going to order NV any day now!

>

>> And you are so right -late talking is not taken serious when they are

preschool age...and then same child if they grow quick or around the age of 3

give or take -all of a sudden the peanut gallery public goes from " oh he's just

a late talker give him time " to " what's wrong with him? " And just so you aren't

caught off guard with that question as the first time you hear it you are with

your child and typically dumbstruck that the bagger at the supermarket has just

had the nerve to ask this question after trying to get your child to say

" hello " ...just smile and say " He's learning to talk and he's doing great " and

then ignore them and look at your child and do simple sign for eat or drink and

ask them if they are hungry or thirsty -you only have to do one before you'll

hear " ooooh " from the person that asked because they'll assume your child is

deaf -but they will also shut up.

>

>

[Guest guest]

I'm also going to let meet some of my son's friends' parents- incredible

local support. It's amazing how quickly you bond over this- can we say- just

after one meeting, you're best friends?! You can't have enough parent support. I

could've written your posting- the " dad perspective " , the tears, etc. It does

somehow get better - you go through stages- from fear to strength to wanting to

give back. Funny you mentioned the " burn out " of wanting to help. Even before

finding you guys, I've contemplated starting a local ATL blog on this b/c we

don't have anything. My husband asks, " Really- you think once noah is behind

much of this you'll still want to be that involved? won't you be burnt out on it

all? " grateful you're not burnt out.

my lowest point and i literally started hyperventilating (sp.?)- the first OT

bill given to us with the explanation of what our child has for insurance

purposes. She hadn't told us much yet. All I saw was the word " ataxia. " I

FLIPPED OUT! I know what that is- a degenerative disease. I told our OT

off(we're good friends now). I knew it was probably for insurance purposes and

it wasn't what my son had (just something they put so they can do sensory/low

tone work), but seeing the word " ataxia " on a form with my son's name on it- I

lost it. She was highly, highly, highly apologetic.

BIG QUESTION- does anyone know of this " research " - kids with apraxia are at high

risk for LD's. Is this recent research or is there anything else out there re:

apraxia. It just seems like a broad statement and none of the kids i know with

apraxia have an LD. Just wondering if this is recent research or if there's

other research to present when an ST says that.

BTW, my son's " special needs " soccer team (they're in a " mainstream league " ) is

undefeated after 2 games. fascinating. my son LOVES soccer now. he wanted to

keep playing in the front yard after his game tonight while we ate dinner- we

let him. He made up his own drill- throw the ball over his head from the

" sidelines " - run and kick the ball around the yard before shooting it in the

goal. yea- just turned 5- ataxia.

thanks again!-marie

________________________________

From: kiddietalk <kiddietalk@...>

Sent: Sun, March 27, 2011 8:20:11 PM

Subject: [ ] Re: what is the future like?

I don't know if you read my book The Late Talker -but what you are going

through is perfectly normal. You can go to Google books and just put in The

Late Talker and read some of it online for free.

I also can tell you for a fact that sometimes less severe issues can be more

stressful to deal with. My first son had life threatening injuries from a

traumatic delivery which created brain, head and neck trauma and he had eating

and breathing problems and had to be watched constantly as he was high risk for

SIDS and at times even while he was awake he would just stop breathing -that

unlike Tanner who's issues with apraxia were less serious- I was surrounded by

support and professionals that were able to tell ME what to do to help my son

Dakota. Insurance companies didn't fight me to provide services. In many ways

that lowers the frustration.

In Tanner's case I was constantly awake at night on the computer researching

adult neurology websites as I wrote earlier trying to figure out what was going

on with Tanner and nobody had the answer for me. He went through all the

genetic testing -we took him to doctor after doctor after doctor in NJ and NY

-and yes Dr. Agin diagnosed him and he got that -but the school professionals

didn't know what apraxia was back then in 1999 -and even at my support meetings

-true story -SLPs used to argue if apraxia was a " real " diagnosis. Some said it

was made up so SLPs can make more money off of desperate parents. And even

those that diagnosed apraxia -even some so called apraxia experts -even today-

don't recognize that apraxia today is not just a speech issue and typically

presents multifaceted. And then there is the confusion over what to call it -I

don't care what it's called as long as it's as short as possible and doesn't

have the word " childhood " or " developmental " associated with it as I also know

it's not just a childhood condition even if it starts there. There is hope as

the children with apraxia today can overcome -but it's like saying a kid that

needs glasses has childhood visual problems of the eyes...but at least for most

visual disorders down the road Lasik may resolve the issue.

So to me that is the added whammy of having what is called a silent disability

(pardon the pun) So while yes we should be thankful that it's not worse there is

nothing wrong with having a pity party when you are alone and letting yourself

cry and talk it out. There are stages to getting to acceptance and being sad is

on the way -expressing it is better.

And you are so right -late talking is not taken serious when they are preschool

age...and then same child if they grow quick or around the age of 3 give or take

-all of a sudden the peanut gallery public goes from " oh he's just a late talker

give him time " to " what's wrong with him? " And just so you aren't caught off

guard with that question as the first time you hear it you are with your child

and typically dumbstruck that the bagger at the supermarket has just had the

nerve to ask this question after trying to get your child to say " hello " ...just

smile and say " He's learning to talk and he's doing great " and then ignore them

and look at your child and do simple sign for eat or drink and ask them if they

are hungry or thirsty -you only have to do one before you'll hear " ooooh " from

the person that asked because they'll assume your child is deaf -but they will

also shut up.

As far as husbands -yes that's pretty much par for the course that they are the

ones that say " he'll be fine " but who knows how much of that is just image and

how much is just the male or father nature? I do know that when working

together it's a good balance because you don't want to drive yourself crazy with

worry as most moms do and you don't want to be laid back to doing nothing

either. Not saying that Dads would be that laid back -but just saying the

balance is good.

There is a point after 3 years old that all accept there is probably some reason

for the delay in speech beyond developmental -but some don't really worry until

4 or even 5 before that happens. Not as often do people wait that long today-

but more times today parents don't realize if their child is misdiagnosed and

they remain nonverbal with inappropriate therapies.

About frustration -the following is just one clip from The Late Talker book. If

you are on Facebook look for me -

[Guest guest]

Hi all,

I'm so grateful to have found this group...I'm pretty new to the group and has

been reading your postings and all are very interesting and informative!

I live in , British Columbia and am interested to find out if anybody

knows a good SLP and MD that I can discuss my daughter's conditions? Also, would

be great if there is anyone here is from the same area!

Thank you!

anita

> > >

> > >

> > > Sooooo-do children ever fully recover from this? what percentage of

children have learning disabilities, need tutors, help reading/writing---trying

to understand and prepare myself since noone can really tell me. I realize

every child is different but some kind of idea would be great. I live in Ga,

does anyone know an amazing SLP for apraxia? How do I know if I have the best

SLP for my son? They all say they work with apraxic children. Anyone have info

on the Atlanta Speech School-any info would be great!!!

> > >

> > > Sammy is 3half and has been in therapy since 1half. He was in private

school last yr with a private facilitator. This year he is in a special needs

program at out local elem school. He has excelled and flourished there! He is

cognitively at 4half. Everyone says he is a good listener, follows direction,

smart, understands just about everything but missing the speech component. He is

keeping up with other typical kids on the playground, he has hypotonia too. I am

glad I can say all these things and brag since I couldn't say most these things

6 months ago! He has 120 minutes of ST on his IEP from school plus 120 minutes

extra private speech I do a week plus aquatic therapy. I'm exhausted to say the

least, also have a 22 month old. I wan to do everything I can to help him. My

husband was a late talker and walker and had learning issues, and know he had to

have tutors and was frsutrated/embarrassed at times. I don't want Sammy to feel

those pains. All help and advise is welcomed!! I can not say how happy I am for

this group, I just wish it cold also be in person and have something locally for

moral support...nonetheless I am grateful.

> > >

> >

>

[Guest guest]

Hi there! Its in NH with , who will be 8 in May...wow 8..it just

hit me! He has global dyspraxia, along with many other things..most recently

we've found he has cerebral folate deficiency.

Anyhow..I didn't read how old your child is, but I know that didn't

start saying much of anything until he was 4 I think..very very little anyway.

Well, I have pushed and pushed and taken him to a zillion therapies in and out

of school..I have made my life pretty much all about him. He is in 12 therapies

a week, between pt, ot, st, vision, and hippotherapy. AND HE HAS COME SOOOOOO

FAR because of it!

I remember, all too clearly, in the beginning begging his therapists to PLEASE

tell me he would talk!! Now, I hear " Mommy will you snuggle me? " Before

bedtime..and " Hi Mommy " in the morning...and he doesn't stop talking all day!

Now there are many sounds he cannot say and letters that don't come out

correctly. Those we are working on...BUT he is talking! He talks to the kids

at school!! (Actually tells them what he wants them to do!)

HANG IN THERE and DONT EVER GIVE UP!!

I would be more than happy to speak to anyone privately if you would like.

Have a wonderful day!

Sent from my Verizon Wireless BlackBerry

[ ] Re: what is the future like?

, first let me say, thank you. Thank you for taking so many hours of your

day to help people like me. I can not tell you enough how much i appreciate

this.

I am so impressed with Tanner's voice video. WOW! I am a New Yorker/Miami

Jewish neurotic mom (worry has always been my middle name) I have fellow

worriers in my family so don't get to cry, let out anything that i am thinking

or discuss since they will feel sorry, worry yada yada. My husband thinks Sammy

will be just fine and lets me vent, but tells me I am doing everything I can and

he'll be okay. My friends can NOT understand any of this. Special needs moms

in the area, look at Sammy as if he is just fine. (looking at him, noone has any

clue) So they probably think i am nuts and he will be just fine in the future.

So I feel like I am not understood by typical and special needs mom. I feel

like I lost at times. I see other kids at aquatic therapy of the children's

hospital and life gets into full prospective for me, I am SOO grateful for what

I have. Those kids are so much worse and really have little future of an

independant healthy life. Yet, I can't seem to stop worrying, crying. I feel

really alone, noone understands what I/we go through on a daily basis. Let me

add, I live in Ga the last few years, so I have NO daily support system either.

My husband is rarely home since he is always working, so it is ALL ME!

Sammy is smart, SWEET AS SUGAR, teacher's pet, good listener, follows direction,

gives hugs and kisses, agreeable, motivated, keeps up with other typical kids-so

everyone probably thinks I am being dramatic. (again, jewish, so maybe)

Just being to write this I feel a relief. I know others have got to feel some

of this. It's funny, my kids isn't autistic or has downs or terminally ill, so

I feel like I am the crazy mother.

When did you start the NV? Did you create this with doctors and just endorse it?

You do this and fish oil? Is NV tolerable? Which flavor is better? Sammy is

a picky eater as is, so giving him anything is a mission. Why NV and not Speech

Nutrients?

How do I know if I am getting him the right SLP's? Should I have someone

monitor him as well? Where, who, what??? HELP!

If he is learning and growing in a special needs public school program for 3/4

yr olds, should I consider a private speech school? His bday is 3 weeks from

where he would have been kept behind. I am considering giving him an extra year

in the public or private school, since he is an August bday and may need the

help, thoughts on this?

Thank you, thank you!

>

> Tanner before fish oils had a monotone sound for the few sounds he did make

>with prompting/songs/pantomime/standing on our heads or whatever else we had to

>do to get Tanner to say anything but " mmmm " and " ma " . I'll never forget the

>first time he said moo in speech therapy it was very long drawn out

>mmmmmmmmmmmmmmmmmmm (the whole time his lips were pressed together during this

>first part which did go on awhile) and then he opened his mouth and bit and

said

> " oooooooooooooooooohhhhhhhhhhhhhhhhh " (sounded like oh the whole time) and I

so

>remember thinking " that does not sound normal! " That was an attempt to say a

>word as close to " ma " as you can possibly get -but he almost made moo sound

like

>ma -and again he did sound like he was deaf when he said it.

>

> When he started talking quickly once on fish oils however -the speech came in

>normal. The first time he said " lellow " and I almost fell over -it was very

>clear and while he wasn't able at that point to say the back " y " sound- he

>clearly said " lellow " again and again and sounded adorable -like Bambi as I

said

>years ago.

>

> He remained in speech inflections normal. He is not at all monotone and does

>not at all sound deaf anymore -you can hear him here

>http://www.debtsmart.net/talk/tanner.html from when he was 11. His speech

>recently since being on NV has much improved in it's sophistication.

>

> Tanner did do an update for the page- I have to check with when it will

>be up -but Tanner now sounds more like a man even though he's only 14 -his

voice

>has deepened. Most times he sounds just like anyone else, sometimes he'll say

>things a bit slower so he doesn't mess up. But even though he's " therapied up "

>as some SLPs have called him -he has every strategy in the book down -he

>occasionally does still mess up in speech especially if he's stressed, tired or

>sick- and fortunately rarely sick. But he also messes up if he goes days

>without his fish oils!!

>

> Tanner's now fully independent and makes his own breakfast -but while he's so

>good at taking NV every day which he makes himself - he tends to forget his

fish

>oils so after a few days he's get bumpy.

>

> How do other relate. The best way to share is through strangers. He plays

>Xbox live which I highly recommend gaming for these kids for social reasons

>because it's one of the way boys play today -and Live has helped in that Tanner

>has no issues talking on the phone because that's kind of what Live is nonstop.

>Yes my husband and I were nervous to start with him on Live but my boys have

all

>the rules down for privacy -they started with just neighborhood and school

>friends but today both Dakota and Tanner are playing games with friends they

>have made from all over through Live. You can choose who to play with and over

>the years a few times someone will say something about his speech if he messes

>up and he just calmly says " I have apraxia which sometimes messes up my speech "

>and they just go on playing from there. He is not at all ashamed of it and

>actually throughout the years he hasn't been teased anymore than anyone - which

>can also be because he's always been taller and larger than his classmates and

>now he towers over everyone -even the teachers at just over 6 foot! You would

>know he's into sports and football even if you didn't know him just to look at

>him -put it that way.

>

>

> I just uploaded some newer photos of Tanner and just noticed something super

>interesting!!! These photos here are about 3 months after starting NV and

>you'll notice his older brother Dakota who is 2 years older is still taller

than

>him so at this point he had to be under 5 10 but still tall for 13

> /photos/album/778734714/pic/li\

st

> In these pictures Tanner is 13 and Dakota is 15 -they both have summer

>birthdays.

>

> These pictures are from July of 2010 when we went up north for my niece's

>wedding so Tanner has now been on NV for 8 months and you'll note he's now

>Tanner than his brother (who didn't start taking it right away and is

>inconsistent in taking it unlike Tanner- but Dakota grew from 5 10 to 6 foot in

>months too -Tanner went a bit taller.

> /photos/album/116272360/pic/li\

st

> Pretty cool. Anyway yes have to get Tanner's talking page update up because

>his speech is far more sophisticated since he's been on NV. Both growth and

>sophistication of speech are part of what NV does

>http://pursuitofresearch.org/pursuit.html The fish oils as you can tell however

>even they alone help bring in the speech.

>

> You do cry more when they are little because it's the unknown -but that's why

I

>share that in this group with parents like you who advocate and learn how to

>best help your child they do overcome. There are so many examples of that.

Did

>you see the video before and after of in speech? This is just a few

>months of NV

>http://pursuitofresearch.org/2010/11/22/apraxia-road-to-recovery-before-and-aft\

er-videos/

> -I do hope more parents document because we now have so many stories like this

>in writing but so few take it serious enough to document it (Thank you

>Gretchen!!!!) Take it serious -essential nutrients for just about all will

take

>away the tears and bring hope- and quickly!! When I say there is hope- I SO

>mean it !!!

>

> If you want to speak with Tanner he would for sure talk to you. Email me at

>lisa@... and let me know. He wants to help other kids and he knows that

>sometimes parents talk to him and they start crying but not because he can't

>talk but because he's talking so well. He understands that he is a success,,

>and he also understands that he has to sometimes work a bit harder to overcome

>his impairment. But don't we all have to work harder at one thing or another?

>

>

> =====

>

[Guest guest]

That is SO awesome Marie -we call that being her Big Sister! I was going to say

you should start a support group -you are a natural at it and for sure there is

so much help needed. There are far more that read these messages then write and

out of those that write most ask for help not answer. And for those reading

don't worry about not knowing the answer or not saying the right thing or

something. Most here know they can go read a book or as I did neurology

websites -but parents and professionals come to groups like this to get to know

others that are dealing with and caring for children.

Oh and about that study and this group. It's groups like this that will prove

that study is bull & *$I# if you check the archives.

Well maybe not. I guess the study will tell all what professionals to avoid

-the ones that wrote that study. In this group again we have a high success

rate and I'd only let my son work with professionals that had belief in his

abilities and expectations that he could be mainstreamed and succeed (at least

that I paid for in private therapy and I'd advocate if I didn't care for someone

through the school) I always have recommended professionals that work with

hearing impaired clients as well as they do not have any preconceived negative

expectation of anyone that is nonverbal or essentially nonverbal. There are

brilliant deaf individuals who go through life this way and go to college and

become whatever they want. And the fact we have so little research for apraxia

and some idiots decided the best research for apraxia to help raise awareness

for this huge population is to show they are at risk for LD -all I can say is I

can't wait till we have more research monies to work with. Who funded that

study?

Dr. Renai Jonas and I through Cherab did a presentation to the SSA office in

Washington for a conference about this very topic about 2 years ago. And while

there were some debates back and forth (which is why I'm curious about where the

funding was from in this time of so little funding monies) the general consensus

at the end is that a speech disability such as apraxia can create developmental

lags in language which is different than say a language impairment. What has to

be noted is that these kids are able to make over a year's gain in a year's

time. But because they were late to talk -they are developmentally lagging in

language.

The cool thing is we have the secret weapon - NV SO helps in academics as well

as so many areas. Ha! Even though we knew before NV that apraxia and LD were

not linked now the study will be proved more wrong with NV. Fish oils help too

-but NV is much more dramatic for most of us.

Tanner also LOVED soccer when he was younger -he doesn't play that as much now

-mainly football and basketball. Congratulations to your little guy and his

team!!! That is so awesome and feel good to read that his team is undefeated.

This song is probably not kid friendly -but here's a song for all of our kids

with speech impairments!

=====