Re: new to the group, please help

[Guest guest]

Hi !

I just answered a similar question at our http://www.apraxia.org page so will

include that below for more info for newbie help -but you have specific issues

raised I did not cover in the following. So here are a few more points for you.

Thank goodness you are aware that just because a child isn't consistent on doing

or saying something that doesn't mean they won't or don't understand. If your

child is apraxic that would mean the inability to perform on command- and that

goes for speech, sounds, words, as well as actions -motor planning in the body.

The sticking out the tongue could be a sign of oral apraxia as well -so will

want to check that out -here's some info on that

http://www.cherab.org/information/speechlanguage/oralapraxia.html

If you let us know what state of country you are in we may be able to get you

help as far as local support. There may be parents or professionals in your

area that will be able to recommend private SLP or neuroMDs to you to help you

advocate for appropriate placement and services if needed going ahead.

Regardless of the diagnosis (which by the way does sound like apraxia) there is

SO much hope that your child will be able to be mainstreamed in school and life.

I know that is a huge fear of ours when our kids are little -but statistics as I

say below -are extremely high in our group. A distinguished group you are now a

part of! So welcome to you and good for you!

Below is a bit more info which may help too, after reading all of this we are

here to help more!

First of all congratulations for being so " on it " when your child is still such

a young age. Because of you, it is my belief that your child's future prognosis

is bright!! What you are describing in symptoms is actually more advanced than

my son Tanner was at the same age...in fact even after almost a year of therapy

from 2 to 2 years 10 months my son was not able to make just about any sound

except " ma " and " mmm " In therapy we would have to sing this " silly song " and act

like a ghost and say " boooo " to get Tanner to attempt the sound " ooooo " and a

conductor of a train and say " choo choo " to get Tanner to attempt the sound " ch "

(yes not kidding -that severe) but...he wasn't able to put them together to say

" choo " He didn't have the ability to say that simple little sound -even with a

professional SLP working with him a number of times a week. Tanner also was

diagnosed with hypotonia, dysarthria (weakness in the facial structure for

speech) apraxia including oral, verbal and through out the body...apraxia being

a motor planning disorder- the inability to do or say something on command -as

well as sensory issues of course. That's the short list. And yes as

suggested you probably will have genetic testing done by some of the

neurologists -most in our group do. A decade ago most of us found no answers

there -today due to better testing we are learning there are some chromosomal

deletions or additions that may play a part -but being that in some cases one of

the normal functioning parents have that same chromosomal issues as the child

-it's still too new to answer questions as what to do with that information.

What we do know is yes get the testing, but the most important thing at your

child's age is appropriate diagnosis to secure appropriate placement and

services (therapy)

There is so much hope for any child with a speech impairment or delay or any

sort. And again especially because you are out searching so young- again good

for you and your child! There are things you can do to help too; in addition to

what the therapist can provide to you to do as " homework " there are many fun and

effective things to do at home to help your child. Have you read the book I co

authored -The Late Talker? Here's a clip of parent tips I wrote for Contemporary

Pediatrics which is the trade magazine for pediatric medical professionals

across the US which covers things to do at home

http://contemporarypediatrics.modernmedicine.com/contpeds/data/articlestandard//\

contpeds/492004/136315/article.pdf

I have a new member archive up on this facebook group http://www.apraxia.org/

page- and if you check the discussion board here there are many other new

members with children around your child's age. What's awesome about facebook is

that you can ask the other parents to be your friend- and it's your choice and

theirs whether you do or don't " friend " someone. Here is just one new member

archive http://www.facebook.com/topic.php?uid=115029735601 & topic=13085 or

http://www.facebook.com/topic.php?uid=115029735601 & topic=7329 but there are so

many others if you check the discussion board topics at this site.

Just a few things to point out when you take your child for second opinions with

a speech pathologist, a neurodevelopmental medical doctor (pediatric neurologist

or developmental pediatrician) and even occupational therapist- all of which I

recommend you secure private outside of EI -through insurance. We have a chapter

in The Late Talker book on how to help with coverage and there is also a topic

in the discussion area here with a wealth of info on this -here is a direct link

to this topic http://www.facebook.com/topic.php?uid=115029735601 & topic=13830

Point out about the posture and jaw droop -can be signs of low tone (don't get

upset even if that is one of the diagnosis -most of the co existing diagnosis we

are seeing today in children with communication impairments are mild and can be

overcome with therapy early on) If your child has low tone in the body and face

that would mean more OT and oral motor therapy as well as whatever therapy was

appropriate.

Please look into the essential nutrients. I just put up a link to a study that

shows in the US 40% of calories for our children come from junk food. Essential

nutrients which include the essential amino acids and essential fatty acids are

needed in the diet daily. If they are missing there is more and more research to

show there are clear health deficits. In our group we've known about the

importance of the essential fats for over a decade -that would be the fish oils.

http://www.facebook.com/topic.php?uid=115029735601 & topic=7401 For the past year,

NV has become the most brilliant addition most of us have ever experienced -and

here is info on perhaps why http://pursuitofresearch.org/science.html

Hope this helps to start...oh and by the way, my son who was more severe in

description than your child -he's today in 8th grade -about 6 foot tall and

doing amazing in school and sports with lots of friends. He loves to read (well

since NV!!! http://pursuitofresearch.org/pursuit.html ) and has a great sense of

humor too. He's known by most as a " really good kid " ....and he is. I know he's

not just going to be alright -that he can be or do whatever he sets his mind to.

I credit appropriate therapy, placement, and of course the fish oils and NV for

the most dramatic surges. And I believe that your child will be the same because

you found us -and the prognosis in our group appears to be higher than for most

=====

[Guest guest]

,

Thank you very much for your reply to my post.

We live in Upstate NY, just north of Albany, NY.

We also believe in a strong diet foundation, our son is on the GFCF diet,

takes cod liver oil daily and is on digestive enzymes since we had

suspicions that he wasn't fully digesting his food even before our

diagnosis.

We have not tried the Nutriiveda product yet and have really just started

hearing about it.

Thanks

From:

[mailto: ] On Behalf Of kiddietalk

Sent: Wednesday, October 06, 2010 2:22 PM

Subject: [ ] Re: new to the group, please help

Hi !

I just answered a similar question at our http://www.apraxia.org page so

will include that below for more info for newbie help -but you have specific

issues raised I did not cover in the following. So here are a few more

points for you.

Thank goodness you are aware that just because a child isn't consistent on

doing or saying something that doesn't mean they won't or don't understand.

If your child is apraxic that would mean the inability to perform on

command- and that goes for speech, sounds, words, as well as actions -motor

planning in the body. The sticking out the tongue could be a sign of oral

apraxia as well -so will want to check that out -here's some info on that

http://www.cherab.org/information/speechlanguage/oralapraxia.html

If you let us know what state of country you are in we may be able to get

you help as far as local support. There may be parents or professionals in

your area that will be able to recommend private SLP or neuroMDs to you to

help you advocate for appropriate placement and services if needed going

ahead.

Regardless of the diagnosis (which by the way does sound like apraxia) there

is SO much hope that your child will be able to be mainstreamed in school

and life. I know that is a huge fear of ours when our kids are little -but

statistics as I say below -are extremely high in our group. A distinguished

group you are now a part of! So welcome to you and good for you!

Below is a bit more info which may help too, after reading all of this we

are here to help more!

First of all congratulations for being so " on it " when your child is still

such a young age. Because of you, it is my belief that your child's future

prognosis is bright!! What you are describing in symptoms is actually more

advanced than my son Tanner was at the same age...in fact even after almost

a year of therapy from 2 to 2 years 10 months my son was not able to make

just about any sound except " ma " and " mmm " In therapy we would have to sing

this " silly song " and act like a ghost and say " boooo " to get Tanner to

attempt the sound " ooooo " and a conductor of a train and say " choo choo " to

get Tanner to attempt the sound " ch " (yes not kidding -that severe) but...he

wasn't able to put them together to say " choo " He didn't have the ability to

say that simple little sound -even with a professional SLP working with him

a number of times a week. Tanner also was diagnosed with hypotonia,

dysarthria (weakness in the facial structure for speech) apraxia including

oral, verbal and through out the body...apraxia being a motor planning

disorder- the inability to do or say something on command -as well as

sensory issues of course. That's the short list. And yes as suggested

you probably will have genetic testing done by some of the neurologists

-most in our group do. A decade ago most of us found no answers there -today

due to better testing we are learning there are some chromosomal deletions

or additions that may play a part -but being that in some cases one of the

normal functioning parents have that same chromosomal issues as the child

-it's still too new to answer questions as what to do with that information.

What we do know is yes get the testing, but the most important thing at your

child's age is appropriate diagnosis to secure appropriate placement and

services (therapy)

There is so much hope for any child with a speech impairment or delay or any

sort. And again especially because you are out searching so young- again

good for you and your child! There are things you can do to help too; in

addition to what the therapist can provide to you to do as " homework " there

are many fun and effective things to do at home to help your child. Have you

read the book I co authored -The Late Talker? Here's a clip of parent tips I

wrote for Contemporary Pediatrics which is the trade magazine for pediatric

medical professionals across the US which covers things to do at home

http://contemporarypediatrics.modernmedicine.com/contpeds/data/articlestanda

rd//contpeds/492004/136315/article.pdf

<http://contemporarypediatrics.modernmedicine.com/contpeds/data/articlestand

ard/contpeds/492004/136315/article.pdf>

I have a new member archive up on this facebook group

http://www.apraxia.org/ page- and if you check the discussion board here

there are many other new members with children around your child's age.

What's awesome about facebook is that you can ask the other parents to be

your friend- and it's your choice and theirs whether you do or don't

" friend " someone. Here is just one new member archive

http://www.facebook.com/topic.php?uid=115029735601

<http://www.facebook.com/topic.php?uid=115029735601 & topic=13085>

& topic=13085 or http://www.facebook.com/topic.php?uid=115029735601

<http://www.facebook.com/topic.php?uid=115029735601 & topic=7329> & topic=7329

but there are so many others if you check the discussion board topics at

this site.

Just a few things to point out when you take your child for second opinions

with a speech pathologist, a neurodevelopmental medical doctor (pediatric

neurologist or developmental pediatrician) and even occupational therapist-

all of which I recommend you secure private outside of EI -through

insurance. We have a chapter in The Late Talker book on how to help with

coverage and there is also a topic in the discussion area here with a wealth

of info on this -here is a direct link to this topic

http://www.facebook.com/topic.php?uid=115029735601

<http://www.facebook.com/topic.php?uid=115029735601 & topic=13830>

& topic=13830

Point out about the posture and jaw droop -can be signs of low tone (don't

get upset even if that is one of the diagnosis -most of the co existing

diagnosis we are seeing today in children with communication impairments are

mild and can be overcome with therapy early on) If your child has low tone

in the body and face that would mean more OT and oral motor therapy as well

as whatever therapy was appropriate.

Please look into the essential nutrients. I just put up a link to a study

that shows in the US 40% of calories for our children come from junk food.

Essential nutrients which include the essential amino acids and essential

fatty acids are needed in the diet daily. If they are missing there is more

and more research to show there are clear health deficits. In our group

we've known about the importance of the essential fats for over a decade

-that would be the fish oils.

http://www.facebook.com/topic.php?uid=115029735601

<http://www.facebook.com/topic.php?uid=115029735601 & topic=7401> & topic=7401

For the past year, NV has become the most brilliant addition most of us have

ever experienced -and here is info on perhaps why

http://pursuitofresearch.org/science.html

Hope this helps to start...oh and by the way, my son who was more severe in

description than your child -he's today in 8th grade -about 6 foot tall and

doing amazing in school and sports with lots of friends. He loves to read

(well since NV!!! http://pursuitofresearch.org/pursuit.html ) and has a

great sense of humor too. He's known by most as a " really good kid " ....and

he is. I know he's not just going to be alright -that he can be or do

whatever he sets his mind to. I credit appropriate therapy, placement, and

of course the fish oils and NV for the most dramatic surges. And I believe

that your child will be the same because you found us -and the prognosis in

our group appears to be higher than for most

=====

[Guest guest]

I just wanted to say welcome to you. I have learned so much from this group and

hope that you do as well. Kate

>

> ,

>

>

>

> Thank you very much for your reply to my post.

>

> We live in Upstate NY, just north of Albany, NY.

>

>

>

> We also believe in a strong diet foundation, our son is on the GFCF diet,

> takes cod liver oil daily and is on digestive enzymes since we had

> suspicions that he wasn't fully digesting his food even before our

> diagnosis.

>

>

>

> We have not tried the Nutriiveda product yet and have really just started

> hearing about it.

>

>

>

> Thanks

>

>

>

>

>

> From:

> [mailto: ] On Behalf Of kiddietalk

> Sent: Wednesday, October 06, 2010 2:22 PM

>

> Subject: [ ] Re: new to the group, please help

>

>

>

>

>

> Hi !

>

> I just answered a similar question at our http://www.apraxia.org page so

> will include that below for more info for newbie help -but you have specific

> issues raised I did not cover in the following. So here are a few more

> points for you.

>

> Thank goodness you are aware that just because a child isn't consistent on

> doing or saying something that doesn't mean they won't or don't understand.

> If your child is apraxic that would mean the inability to perform on

> command- and that goes for speech, sounds, words, as well as actions -motor

> planning in the body. The sticking out the tongue could be a sign of oral

> apraxia as well -so will want to check that out -here's some info on that

> http://www.cherab.org/information/speechlanguage/oralapraxia.html

>

> If you let us know what state of country you are in we may be able to get

> you help as far as local support. There may be parents or professionals in

> your area that will be able to recommend private SLP or neuroMDs to you to

> help you advocate for appropriate placement and services if needed going

> ahead.

>

> Regardless of the diagnosis (which by the way does sound like apraxia) there

> is SO much hope that your child will be able to be mainstreamed in school

> and life. I know that is a huge fear of ours when our kids are little -but

> statistics as I say below -are extremely high in our group. A distinguished

> group you are now a part of! So welcome to you and good for you!

>

> Below is a bit more info which may help too, after reading all of this we

> are here to help more!

>

> First of all congratulations for being so " on it " when your child is still

> such a young age. Because of you, it is my belief that your child's future

> prognosis is bright!! What you are describing in symptoms is actually more

> advanced than my son Tanner was at the same age...in fact even after almost

> a year of therapy from 2 to 2 years 10 months my son was not able to make

> just about any sound except " ma " and " mmm " In therapy we would have to sing

> this " silly song " and act like a ghost and say " boooo " to get Tanner to

> attempt the sound " ooooo " and a conductor of a train and say " choo choo " to

> get Tanner to attempt the sound " ch " (yes not kidding -that severe) but...he

> wasn't able to put them together to say " choo " He didn't have the ability to

> say that simple little sound -even with a professional SLP working with him

> a number of times a week. Tanner also was diagnosed with hypotonia,

> dysarthria (weakness in the facial structure for speech) apraxia including

> oral, verbal and through out the body...apraxia being a motor planning

> disorder- the inability to do or say something on command -as well as

> sensory issues of course. That's the short list. And yes as suggested

> you probably will have genetic testing done by some of the neurologists

> -most in our group do. A decade ago most of us found no answers there -today

> due to better testing we are learning there are some chromosomal deletions

> or additions that may play a part -but being that in some cases one of the

> normal functioning parents have that same chromosomal issues as the child

> -it's still too new to answer questions as what to do with that information.

> What we do know is yes get the testing, but the most important thing at your

> child's age is appropriate diagnosis to secure appropriate placement and

> services (therapy)

>

> There is so much hope for any child with a speech impairment or delay or any

> sort. And again especially because you are out searching so young- again

> good for you and your child! There are things you can do to help too; in

> addition to what the therapist can provide to you to do as " homework " there

> are many fun and effective things to do at home to help your child. Have you

> read the book I co authored -The Late Talker? Here's a clip of parent tips I

> wrote for Contemporary Pediatrics which is the trade magazine for pediatric

> medical professionals across the US which covers things to do at home

> http://contemporarypediatrics.modernmedicine.com/contpeds/data/articlestanda

> rd//contpeds/492004/136315/article.pdf

> <http://contemporarypediatrics.modernmedicine.com/contpeds/data/articlestand

> ard/contpeds/492004/136315/article.pdf>

>

> I have a new member archive up on this facebook group

> http://www.apraxia.org/ page- and if you check the discussion board here

> there are many other new members with children around your child's age.

> What's awesome about facebook is that you can ask the other parents to be

> your friend- and it's your choice and theirs whether you do or don't

> " friend " someone. Here is just one new member archive

> http://www.facebook.com/topic.php?uid=115029735601

> <http://www.facebook.com/topic.php?uid=115029735601 & topic=13085>

> & topic=13085 or http://www.facebook.com/topic.php?uid=115029735601

> <http://www.facebook.com/topic.php?uid=115029735601 & topic=7329> & topic=7329

> but there are so many others if you check the discussion board topics at

> this site.

>

> Just a few things to point out when you take your child for second opinions

> with a speech pathologist, a neurodevelopmental medical doctor (pediatric

> neurologist or developmental pediatrician) and even occupational therapist-

> all of which I recommend you secure private outside of EI -through

> insurance. We have a chapter in The Late Talker book on how to help with

> coverage and there is also a topic in the discussion area here with a wealth

> of info on this -here is a direct link to this topic

> http://www.facebook.com/topic.php?uid=115029735601

> <http://www.facebook.com/topic.php?uid=115029735601 & topic=13830>

> & topic=13830

>

> Point out about the posture and jaw droop -can be signs of low tone (don't

> get upset even if that is one of the diagnosis -most of the co existing

> diagnosis we are seeing today in children with communication impairments are

> mild and can be overcome with therapy early on) If your child has low tone

> in the body and face that would mean more OT and oral motor therapy as well

> as whatever therapy was appropriate.

>

> Please look into the essential nutrients. I just put up a link to a study

> that shows in the US 40% of calories for our children come from junk food.

> Essential nutrients which include the essential amino acids and essential

> fatty acids are needed in the diet daily. If they are missing there is more

> and more research to show there are clear health deficits. In our group

> we've known about the importance of the essential fats for over a decade

> -that would be the fish oils.

> http://www.facebook.com/topic.php?uid=115029735601

> <http://www.facebook.com/topic.php?uid=115029735601 & topic=7401> & topic=7401

> For the past year, NV has become the most brilliant addition most of us have

> ever experienced -and here is info on perhaps why

> http://pursuitofresearch.org/science.html

>

> Hope this helps to start...oh and by the way, my son who was more severe in

> description than your child -he's today in 8th grade -about 6 foot tall and

> doing amazing in school and sports with lots of friends. He loves to read

> (well since NV!!! http://pursuitofresearch.org/pursuit.html ) and has a

> great sense of humor too. He's known by most as a " really good kid " ....and

> he is. I know he's not just going to be alright -that he can be or do

> whatever he sets his mind to. I credit appropriate therapy, placement, and

> of course the fish oils and NV for the most dramatic surges. And I believe

> that your child will be the same because you found us -and the prognosis in

> our group appears to be higher than for most

>

> =====

>