Re: Progress in 9 months time..... AMAZING

December 1, 2010

Thanks for posting . I agree with you ,many kids get almost instantaneous

results but some children have gains over time which is also great !!!!

CongratsÂ !!

Â

Demi

From: <>

Subject: [ ] Progress in 9 months time..... AMAZING

Date: Wednesday, December 1, 2010, 7:05 PM

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Hi all-

A 4 day holiday weekend.... that included a break in all activities, school, and

even my Son's Speech therapy, has caused me to have extra time to go through a

huge pile of old " Mini DV Tapes " from our camcorder- to simply label what was on

each of them. The pile of " non labelled tapes was really bothering me.... it was

nice to finally take the time to label what was on them!

I found the old tape, where I recoreded my son BEFORE NV last Feb..... I also

saw the numerous videos of him that I recorded of him in the next few weeks. My

Son was 35 months old when he started NV.... he is now 44 months old. I tried to

take time to post these videos on You Tube.... but was not able to have

success... the tapes were stored... but not forgotten!

I wanted to discuss some of my feelings/observations after seeing these videos

as follows:

1. My Son has a diagnosis of moderate to severe Apraxia.... (I feel that he

leans more toward the Severe end).. When we started NV, I think that I expected

a MIRACLE.... and it did not occur....I was too emotional with worry over my

son's condition to even notice the small changes that occurred within 2 weeks

after NV! Looking at all of these videos with a CLEARER MIND made me see that

there WERE CLEAR DIFFERENCES! My parents even noticed the differences when

watching the videos! My son seemed much more focused after the second week of

NV. He also went through the typical " hyper stage " that some of our kids do--

but not in a bad way..... he simply was babbling more.... and trying harder to

use " word approximations " ... which was good! (He barely made any sounds at all

prior to NV.....to even get him to TRY to verbalize a " word approximation " was

very hard back then). The increase in babbling was a GOOD thing.... think about

it..... he had delays.... and

he HAD to go through the babbling stage before attempting to master actual

words. The NV helped him with this... and more and more " word approximations "

started to emerge in the next few months!

2. Last year, I was so consumed with worry- my son had clear delays... he was in

EI--- he soon would be turning age 3....(which to me, meant that he would be

transitioning from EI to a Special Needs Pre K).... all of my energy was taken

up with worry about how my son did not speak.... and how I had to FIND A WAY to

FIGHT the " Special Needs PK School who did NOT believe in 1:1 pull out ST.... I

was too distraught to SEE the changes in my own child! I feel that I had " high

hopes " that he would have an increase in speech abilities (meaning ,to me, the

use of WORDS).... which he did not during the start of NV.... As mentioned in

#1.... the NV assisted with the babbling... which assisted in the development of

" word approximations " and so on....

3. After looking at all of the old videos... and comparing them to even 1 week,

1 month after NV.... all the way up to the present..... it is CLEAR that

SOMETHING DID CHANGE.... FOR THE BETTER! I CAN recall feeling really upset

inside in the past.... because some of the moms who took the time to post

" before and after videos of their children on NV " seemed to have kids who

" seemed to have better Speech abilities than my Son on their BEFORE NV

Videos " ... I was happy for them....(their kid's progress AFTER NV was very

obvious)! I also, felt sad when I compared my son to these other kids.... when I

compared him to them, he seemed to be even more behind in speech to me.... I can

recall feeling quite depressed about this.

4. Months later..... with a clearer mind..... (more time to internally ACCEPT my

Son's Speech Delays- and deal with them from a point of strength)... and also

due to the fact that I DID obtain 1:1 pull out ST at the PK level in my

State.... (Thanks again - for empowering me to achieve this).... I CAN now

see differences.. and will describe them as follows... (Again, We just looked at

a bunch of old videos of our Son.... the differences were CLEAR to us... and

also to our Family Members who watched these with us)....

5). BEFORE NV

- all Baby videos of Tyler show hardly any babbling other than MUM MUM MUM... he

WAS able to create some pretty powerful Raspberries though!

- older videos show clear Sensory Issues starting at age 5 months old.... Ty was

screaming every time he was placed on grass in bare feet, He also had huge

sensory issues at bath time..(it took awhile to get him used to the sensation of

being in water). there were feeding issues (gagging on certain textures) that

continue to this day as well.

SHORTLY BEFORE START OF NV... (age 2 forward).... I seemed to ALWAYS be trying

to get

Tyler to point out his body parts on old videos.... He REALLY could point to his

nose, his mouth, etc.... he just never did it on a video.... I sounded so

pathetic on these videos... I kept asking him to show me his nose.... I kept

asking him to talk to me.... and he appeared to have a blank look on his face as

I did this. He would smile from time to time.... but he also always seemed to

have a " BLANK " expression on his face... and his mouth used to hang open.... His

eyes often, had no sparkle.... (my dad used to tell me that he thought Tyler was

autistic during these days).... Tyler always TRIED to be social with others....

he also loved to hug others.... and he DID know where his nose and mouth, etc

were.... he had " no words " .... but his smiles and hand/arm " gestures " made up

for this. If I asked him " how big are you " ... he would raise his arms up in the

air with a huge grin and say OOO eee (so big). Looking back, it almost seems

like Tyler did not

like " being put on the spot " to " talk " ..... in these old videos..... Tyler was

a smart little kid... he started ST with EI at age 20 months.... he used to

smile, and place his fingers in his ears when the therapist tried to work with

him. He KNEW that " this speech stuff " was HARD!

- I have a video of Tyler the day before we started NV..... we were going

through home-made " Flash Cards " together (laminated pictures of family members,

favorite toys and pets).... He was very distracted.. and became upset quickly...

He continued to have a " blank expression " .

AFTER NV....

The blank look on his face was gone by the second month after NV.... his FOCUS

improved.... which caused his attention span during his ST sessions to

improve... Speech abilities transitioned from babbling to more word

approximations. the increase in his attention span helped him to get more out of

his ST Sessions! He was able to follow directions better-- and he was more

willing to TRY! We have always loved a " Fun Class for kids " called

Kindermusik.... these classes are offered in most states- and they are awesome!

Prior to NV, Tyler spent his Kindermusik class times trying to crawl toward to

exit door.... NOW- he is engaged, follows directions... and LOVES IT! His

" Words " have increased to the point where he can put together 3 word

sentences..... such as " MUH OWE ON " (My show on)... He started to have an

increased interest in singing this past July for the first time..... If I " sing

simple songs slowly " .... he can follow me! This is the child who seemed

to have zero interest in simple Nursery Rhymes at age 2 and age 3! He will be

age 4 in March.... and, starting about 2 months ago, he is " catching up " to

learning all of those Nursery Rhymes! (He can't sing them like " typical kids

do " ).... BUT HE IS SINGING! It is beautiful!

Have to include this.... Ty's version of " Twinkle Twinkle Little Star " ....

EE OHL EE OHL EE- EE ARE... (Twinkle, twinkle little star)

OW AYE WUH OO OW OO ARE. ( how I wondor what you are).. W's are hard- he has

learned to put his hand over his mouth to " make the windy sound " when he

attempts " W's "

U-PAH uh uh WHHH-ole oh AYE! (S sounds are also hard)..

He can spell his name to ther tune of the song " Bingo " now as well... He says T-

AYE - luh - E- R-uh. He can count out objects up to 6.... he can identify

colors... he DANCES! He is drawing the letter " T " correctly-- and often does it

all over my walls in crayon! (I do not like this- but he is so cute.... I ask

" who did this " .... he proudly, responds " ME " .

We are very busy with all of his therapies... and also have a very advanced

older daughter who is a firecracker.... (involved in dancing and acting

classes.. and is doing an amazing job at it at only age 5.8 yrs old)- she talked

early, knew her ABCs early... EVERYTHING she did and still does is EARLY. It is

a CHALLENGE to balance our lives/schedules to meet the needs of these 2

children! We never " pushed " " potty training with Tyler " .... yet, he essentially,

figured it all out on his own by simply trying to copy his older sister!

In conclusion, I feel that Tyler has come very far in a short time.... and I

BELIEVE that NV has assisted him to do this. We also are giving him the NN Fish

Oils... he takes 2 Pro EFA, and one Pro EPA per day.... (These are huge gel

caps--- I pierce them with a pin- and squirt them into his mouth). HE LOVES

THEM!

PLEASE-- to any of you who doubt NV-- DO NOT GIVE UP if it does not seem to

create " instant miracles " .... MOST people do see immediate changes.... and some

do not... (I fell into this category in my son's case), but if you had the

patience to read my detailed descriptions of how my son was " Prior to NV " ... you

can see that he had SIGNIFICANT Speech Delays! I feel that the NV assisted my

Son to " go through the normal process of achieving developmental milestones that

he was not able to achieve " ...... and CHILDREN MUST go through these milestones,

as part of their development! YES- we all want our children to SPEAK at an age

appropriate level...... when we have kids affected by Apraxia- this DOES NOT

OCCUR! I feel confidant that NV assisted my son to " catch up " .... Yes- his

Speech remains delayed.... but he improves every week! My child is a SMART

kid--- now that he is more focused, and more confidant-- he WANTS to try to talk

MORE! He learned and

memorized the entire song " BINGO " during a short drive in the car (when his

older sister, who interrupts him was not present)!

He also has a diagnosis of Hypotonia.... and wore DAFOs (Orthotic Braces) from

age 20 months on to assist with ankle pronation. His braces have been cut down

in size! He can RUN, he can climb!

NV IS HELPING HIM!

[ ] Re: Hello All - My 22 month old has been given an

Apraxia Dx

Brett you can read some of The Late Talker book online for free at Google books

-go check it out and see if your child to you fits any of the description of

apraxia. If you agree with the therapist that suspects it -then you should make

an appointment with either a pediatric neurologist or developmental pediatrician

to confirm or rule out those soft signs- and the more knowledgeable ones who see

children with apraxia, autism and other disorders will be able to let you know

if your child is presenting as normal in all other areas. Even from your first

email I'm kind of getting the impression your child may just have a simple delay

and that's awesome. Goodness knows some of our kids have to be in that 75%!!!!

You'd think we'd end up with more typical " late talkers " here -but I believe

what happens is that most of them read some of the other messages and are blown

away to say anything. At least that is what a few have written to me. This group

is for any

type of delay in speech from developmental to impairment and for any reason.

The goal is to provide you with the tools you need to best advocate for what

would be the appropriate services for now to provide your child with the best

possible prognosis. I'd say once you get a neuroMD exam if he finds your child

falls into the normal range in other areas than of course continue the SLP, but

the fish oils or NV (

http://pursuitofresearch.com/2010/11/01/the-science-nutrition-and-special-needs

which I highly recommend if your child does have an impairment vs a simple

delay) may or may not help stimulate the speech any faster.

Typically for whatever reason it is us, the moms that get that " feeling " Ask her

how she feels now about your child. Does she think it's a simple delay or does

she agree it's apraxia? I believe that all of us as parents can tune into that

internal sixth sense if we are open to it- and seems you two are as parents.

Awesome!!

=====

December 1, 2010

we just have to figure out how to help you get the videos up because yours

is such a great example to bring hope to those who don't see the dramatic surges

in days.

I LOVE the way you wrote out the way Tyler sings now!!! I think Tanner said

" fintle " for twinkle in the little star song -you can hear him here

http://www.debtsmart.net/talk/tanner.html and he too was diagnosed severe to

profound apraxic prior to fish oils. By the first time he was up on the talking

page he was on fish oils for 9 months!!!! Most people listen to him and say how

well he speaks but they have no idea that it took MONTHS of fish oils to get him

to where he was in the first Christmas tape that Bilker did of him.

Oh but reading your message brings back so many incredible memories- of how we

treasure each word and sound and action. And where do you go with this

excitement as my friend's didn't understand -was to this group!!! But yes lots

of the kids here today being diagnosed as no where near as severe as Tanner was

either -I mean at 2 years 10 months old his only word was " mmmmm " and " ma " and

with all the other issues -hypotonia, sensory and motor planning deficits and

yes that lovely blank stare. And Tanner did not smile much. Best Tanner classic

face is if you look at the family photo of us at the bottom of this page

http://www.cherab.org/news/indexnews.html now it's as clear as a bell -you can

see the low tone and lack of twinkle in the eye -blank look. While your parents

said autistic -my mom said Tanner looked " out of it " But while fish oils helped

a bit -NV has blown the top off for Tanner -and he's 14 years old now.

There is one part of what you wrote that I thought would be good for you to add

to this. You were I recall so upset about the slow progress Tyler was having on

NV that you canceled any future shipments of it...but then you wrote that he

stopped progressing all together. So you put him back on because you said that

a little progress is better than none. But like I said to you today -you can

even see the difference in photographs of how interactive Tyler is today. I am

SO THRILLED for you!!

I may have limited internet access the next few days but can't wait to hear what

you think of the new site and in particular the blogs I wrote regarding NV links

to neurogenesis and antivirals. Right now you can find them at

http://www.pursuitofresearch.com

CONGRATULATIONS!!! I honestly am so happy for you and know just how you feel!!

Really -even when the surges are greater down the road -it's those first words

and breakthroughs that will always be in your heart as the most precious.

Talk to you soon!

=====

December 1, 2010

PS -just want to clarify on this because I don't want it to come across that in

any way I don't thank God every day for the fish oils as they were such a

dramatic help to Tanner back when....but not for his oral apraxia barely at all.

As I wrote Dr. Jonas even tried hooking up electrodes to his face to try to

stimulate the nerve endings as when not engaged -even when he did learn how to

make facial expressions and knew how to smile -he still had a blank look. That

helped a bit but not enough. The reason we did it was due to one teacher he had

that assumed Tanner didn't understand what she was saying because he always had

this " blank look " on his face (yes I explained oral apraxia to her but she was

just a creep! So this is why we tried the electrodes. But anyway yes NV has

changed it to where Tanner no longer ever has that blank look)

And outside of blank look, I just want to clarify that NV helped in ways beyond

fish oils -and most of them are here

http://pursuitofresearch.com/pursuit-of-research/ but again since I wrote " fish

oils helped a bit " I didn't mean overall -I just mean specifically with that

" blank look " and if you look at the page of Tanner- that was Tanner's face

almost all the time -blank. Just wanted to be clear because I think the fish

oils are so incredible too.

=====

December 2, 2010

Hi -

I just looked at the pictures and sound clips that you mentioned... it is so

awesome that you have such a great video record of Tanner..... and I loved his

version of Twinkle twinkle!

Re the NV-- yes, I am the one who experienced slow progress.... but I never

cancelled my shipments. We were receiving 4 cannisters per shipment- and we

built up quite a surplus. I received a VM from Zrii sometime later- they were

requesting updated Credit Card info... (the card they had on file no longer

worked for them). I never called them back until this week, because we had such

a huge amount stored.

I was being auto Shipped 4 cannisters back then.... 2 vanilla and 2 chocolate

per shipment. I wanted to try the NV myself. I did try it, and it made me feel

very nervous....I did not like that feeling.... and stopped taking it myself.

There was another mom who also experienced this same feeling-- and it subsided

in time..... I keep telling myself that I will try it for myself again when

there is less stress in my life.... LOL! (it has been hard trying to take care

of both my house and children.... plus having to help my parents more and more

now that they are in their 80's!

We did stop the NV briefly with Tyler... I can't recall when this was- but

believe it was sometime prior to a Speech Eval that Ty was going to have this

past Spring.... He has been on it and the fish oils ever since.

I'm not sure why my records show that I cancelled my shipments... perhaps, when

I did not call back to update the credit card info, they cancelled me. As you

know, I did place another order- because we are now getting to the end of the

huge surplus of cannisters that were built up from previous shipments!

Will try to go over the new web site this evening.... I'm loving the fact that

there is absolutely NOTHING on our calendar for this evening!

Ty had another one of his " formal speech Re-evals " with Dave Hammer this

afternoon. His diagnosis has been changed from " suspected " to CONFIRMED

Apraxia.... and he has been classified as being in the Severe category. I feel

a little sad about that.... but hey-- it's not like I did not already KNOW this!

I will have this report in my hands when it comes time for Tyler's next IEP! I

of course, will be asking for MORE 1:1 ST! LOL- here I am again, preparing to

battle for my son! I'm getting a bit irritated..... have met so many other moms

in the waiting rooms of where we go to ST.... and have also met local moms on

some of the boards. I have heard that the SAME special needs PK that my son

attends is telling " new parents " that " they DO NOT do 1:1 pullout " ..... (but

they DO with my son). I feel good, because I have helped some people behind

me... but I now, am worried that this School may be mad at me for being so open!

LOL.... time will tell!

[ ] Re: Progress in 9 months time..... AMAZING