Re: not the best day

February 7, 2010

Anni-

I know exactly how you are feeling. I have gone through times where it

seemed that my Son was not progressing.... and even where it seemed like he was

going backwards.

Remember- children with Apraxia often do seem to have regressions. There

were times that I thought my Son (now 2 yrs. 11 months) had a new " word " -

or his version of a word nailed down..... then a few weeks later, he seemed

to forget all the " words " that I thought he had learned. His Speech

Therapist told us that this is common with Apraxia.

We also had him on the NN Children's DHA.... but we noticed differences

after only one week on the PRO EFA and EPA. He is starting to put two or three

word approximations together now. Granted, he is not saying the words

correctly, but they are words- and we know what he is saying. " Ma Ma EEE OOH "

is " Ma Ma Read Book " !

I will discuss the Nutriiveda with his Pediatrician during his 3 year

appointment.

Increasing the Speech therapy helped a bit as well. We are now up to 2 EI

Sessions per week and 2 Private ST sessions per week.

Our kids sure worry us...... I often feel like there is a dark cloud

hanging over my shoulders. I wake up worrying about my Son, I go to sleep

worrying about my Son.... I often walk around and wonder how we can go on with

this worry " ..... then, there are days when my Son does something new...... and

I feel filled with joy..... these moments are like medicine to me!

Remember, you have not had him on the EPA EFA combo for very long.... and

you may see even more when he is on the Nutriiveda. I understand how you

feel- and hope it gets better.

February 7, 2010

Thanks for your kind words. I am very hopeful that the oil and nv will help. I

guess what is troubling me is that I have always had autism concerns. Jacks ST

and OT have said there is too much joint attention etc. But I am wondering if we

should have him evaluated? I am scared to get a misdiagnosis as this can be very

harmful as we as seen with . He just seems less animated then your

typical 2 year old. I have SPD specialist coming to see us on Monday. It will

be interesting to see what she says. I am going to remain hopeful. We start

HBOT in 3 weeks, I am very excited for this! Thanks again for the email, Anni

Sent from my BlackBerry® powered by Virgin Mobile.

Re: [ ] not the best day

Anni-

I know exactly how you are feeling. I have gone through times where it

seemed that my Son was not progressing.... and even where it seemed like he was

going backwards.

Remember- children with Apraxia often do seem to have regressions. There

were times that I thought my Son (now 2 yrs. 11 months) had a new " word " -

or his version of a word nailed down..... then a few weeks later, he seemed

to forget all the " words " that I thought he had learned. His Speech

Therapist told us that this is common with Apraxia.

We also had him on the NN Children's DHA.... but we noticed differences

after only one week on the PRO EFA and EPA. He is starting to put two or three

word approximations together now. Granted, he is not saying the words

correctly, but they are words- and we know what he is saying. " Ma Ma EEE OOH "

is " Ma Ma Read Book " !

I will discuss the Nutriiveda with his Pediatrician during his 3 year

appointment.

Increasing the Speech therapy helped a bit as well. We are now up to 2 EI

Sessions per week and 2 Private ST sessions per week.

Our kids sure worry us...... I often feel like there is a dark cloud

hanging over my shoulders. I wake up worrying about my Son, I go to sleep

worrying about my Son.... I often walk around and wonder how we can go on with

this worry " ..... then, there are days when my Son does something new...... and

I feel filled with joy..... these moments are like medicine to me!

Remember, you have not had him on the EPA EFA combo for very long.... and

you may see even more when he is on the Nutriiveda. I understand how you

feel- and hope it gets better.

February 7, 2010

Anni if you were using the wrong formula of fish oils prior then that time

doesn't count for therapeutic reasons -only healthy ones. It's one of the main

reasons that we do recommend certain brands because not all fish oils are the

same. Why was last week great? You say you have seen nothing but clearly you

must have seen something last week right? And why is this week so bad? I'm not

sure what you mean by " more autistic " Do you mean more withdrawn? Keep in mind

that increase in frustrations will tend to appear as either the child lashing

out or withdrawing due to frustration. My son Tanner was one that would

withdraw. The difference between a child with autism and one that is

misdiagnosed with autism however is that the minute you relieve the frustration

by providing alternative communication (for example) they embrace it and

respond. I have a story in The Late Talker book for example about my son Tanner

when each morning I would ask the boys " what do you want for breakfast? "

Children that are are apraxic desperately want to be able to communicate with us

-but just can't. I am thrilled you have just gotten the nutriiveda..because

unlike the fish oils which we know work quick in a day to three weeks -the

nutriiveda appears to be working in a day to a few days! Please know that your

frustration is so normal. Robin who's daughter Mel is showing remarkable surges

on nutriiveda after years and years of all types of therapies and strategies

including medications...as you'll read in her blog

http://littlemermaidmelanie.wordpress.com/about is also going through

frustration. Progress is almost never fast enough for us. We all have good and

bad days. Point is that your child is in great hands because you are out

searching for ways to better help him...and besides you found the two things

that I think are one day going to be found to be standard most important to our

children -the right formula of fish oils and nutriiveda....or at least whatever

they find in the nutriiveda that is helping.

" Re: My two year old son with Apraxia

Don't feel desperate -we are all here for you and know what you are

going through!

As I just covered in the last email (am I saying that too much

today?) it's not that your communication delayed child has less eye

contact which is not unusual -it's why. In many cases it can be

from frustrations.

Have you tried any alternative types of communication -even simple

forms of sign or picture exchange? Here is a good example of how I

got Tanner out of his shell with a simple homemade version of PECS.

Until Tanner was almost three his only word was " ma " and everything

else was " mmm " He would inflect his " mmmm " sound to make it sound

like no by saying " MMM! " while stamping his foot for example -but for

the most part -Tanner looked out of it -and would just stare off.

I had this cute little kids bench that my kids would eat breakfast

at and each morning I would ask them both what they wanted for

breakfast (this was before I knew Tanner was apraxic of course and

thought he would just start talking and answer me one day) Each

morning instead -Tanner would stare off into space -and he stopped

even paying attention when I asked questions like that. So every

morning -Tanner would eat what Dakota wanted for breakfast -he was

the only one that would answer.

One day -I took a sheet of paper and drew simple pictures of

breakfast foods on it and told my two boys we were playing diner

today and they were the customers and they had to point at what they

wanted for breakfast from the menu. You should have seen Tanner's

face -he lit up and right away pointed to the pancakes -which is so

ends up is his favorite. For the first time he was able to " tell "

me what he wanted for breakfast! (Of course then I became the short

order chef -pancakes for Tanner and french toast for Dakota! -But I

was thrilled Tanner was able to let me know!) Each morning after

that Tanner would search for that sheet of paper before they

would sit down for breakfast -and cling to it for dear life.

One thing -have someone record when you do this for the first time.

Do I ever wish someone told me to!- Tanner's face was priceless! Speaking of

menus -Tanner just (clearly) asked me for a lollypop (we went to Disney's Not

Too Scary Halloween Party the other day and got tons of candy!)

You are in the right place -and the future looks bright for our

children due to all of us sharing the therapies and tips that work/ed

best! "

Here are two stories about frustrations that may make you feel better:

From: " kiddietalk <kiddietalk@...> " <kiddietalk@...>

Date: Wed Dec 25, 2002 12:35 pm

Subject: " The Day he knew that would be OK " kiddietalk

Dear Brock,

Just wanted to jump in and say I'm sorry that you are not having a

happy day today. I'm not sure why is whiney –could be lots of

reasons like a cold coming on ...or ...he just realized he can't

easily tell Santa what he wanted for Christmas? –which is a good

thing if that is what it is. Why would I say that?

I have a story to tell you that maybe will cheer you up –then I too

have to get back to my relatives!

My ex-boyfriend years ago was in a severe car accident on a

snowy night –his friend was driving –they were just out of high

school. The car went into a skid and the friend lost control of the

car and it went into a snow plow. The snow plow went through the

car's front window –and through 's head/eye/and taking off his

ear. was rushed to the hospital -his father and mother were

told that only had a 2% chance of living –and that even if he

did survive – and - regained consciousness, he will be brain dead.

's parents could afford the best doctors money could buy -and

that was the prognosis from all. With hope -they were told that

the 'best' they could hope for was that within a year they could get

a place in Kessler where -they will teach him how to

put " square pegs in square holes " -I'll never forget his mother

telling me this. didn't die –and went from coma –to semi coma –

to months of not being able to anything for himself. He couldn't

feed himself or dress himself -etc. He was allowed to -after months -

go out with mom and dad once in awhile.

one day 's dad –who is a teacher at FIT in NYC, told me the

following story of " The Day he knew that would be OK "

" I wanted to take to play golf. I knew I wasn't supposed to do

that - wasn't able to do things like that yet, he couldn't even

dress himself yet. It was a beautiful day though and I just wanted

to take him out to smell the fresh air and just try to hit the ball

around a bit. As his father -I knew what was best for him. I knew

couldn't hit the ball or play golf yet -he had trouble even

holding the club -but was so good at golf and really loved

playing it so much before the accident -I just thought this would be

good for him.

tried to swing the club -but he couldn't hold the club or swing

it right. He kept trying though over and over. It was painful for

me to watch my son like this -I was about to say let's go. All of a

sudden - threw down the club and threw himself on the ground and

started to cry. At this point -a tear started to roll down 's

dad's face as he said the next sentence " and that's when I knew

was going to be OK. " I looked at 's dad who never turned to me

as he drove the car -and asked " Why? " He then looked at me and

said " Because he realized he couldn't do it -and he cared -he cared

so I knew he would be OK. "

I met about a year after the accident at a club with my

friends -around the time he was " at best " going to be trying to put

square pegs into square holes. to this day is one of the best

dancers you would ever meet -and was a walking personality/charm/

intelligence people magnet. He went through plastic surgery and eye

surgery -but that was the minor stuff. , just like his dad

thought -was OK!

Since many of you may think this story is made up? His real name is

L. -or L. -and he is from Upper Montclair, NJ and I've

given enough details that you could check this story out -it's 100% a

real life miracle -and it's hopefully a story that will inspire you

Brock. and his parents know me very well -but just in case -

use my maiden name - Fernandez.

I have the last email you posted below -it appears there are some

good things you were seeing in the first three weeks. Again -I don't

know all the whys of whiney -but tears -and the present -isn't

always as bad as they may appear -in fact they may be bright. I hope

they are for you too.

Merry Christmas!

~~~~~~~~end of archives

=====

February 7, 2010

Thanks , you made me feel better. Last week was good because he was so

alert and on. He actually stated using words to get what he wanted. I would

usually have to model the word. He would go to the cupbord an try to say

" open " . It was amazing! This week he is quiet and he has started toe walking

again, something he has only ever done a couple of times. He is avoiding eye

contact and seems distant. I have been so good with his diet, so I am usure why

this is going on? I think it may be yeast. I am going to try VSL3. Anyway, I

am hopeful. NV is going well, today was day 2. I am not havig any trouble

getting it into him. I am doing a half scoop in the moring and a half scoop at

dinner. With regards to oil, I am doing 2 Efa and 1 Epa. Please let me know if

you have suggestions. He loves the oil, should I give him more? His stools are

still blow outs, even though I am following our DAN Doc's diet. I feel like I

am missing something?

He is, as always, my dear sweet lovebug. This will be a better week. I really

appreciate your support. I finally feel like I am not alone!

Thanks again,

Anni

>

> Anni if you were using the wrong formula of fish oils prior then that time