update..haven't posted in a while

[Guest guest]

Hi everyone. Since I haven't posted in a bit and had the ever elusive bit of

free time I figured I would let everyone know how we are doing. First off,

thanks to so many people who generously gave of their time and knowledge to help

my dughter and I, we are now on what I believe to be the " right track " YIPEEE

I spoke with Terri McDearman from Wolfson's(ville, FL) who then referred

us to a SLP exp in apraxia named Judy Hammerneisly (SP?) who also works at

Wolson'e but at a location that is closer to me. She is wonderful and through

seeing her I was

able to at last get a diagnosis (somewhat) for my daughter. She was diagnosed as

probable CAS with it being explained to me that she didn't say enough words to

provide a definitive diagnosis at this point. Soo..we went to Woflson's for a

while and began reaping the benefits of some oral motor therapy. Also at this

time my daughter was having other speech therapy and OT and PT which amounted to

13 therapies a week!! Some of them over an hour away..it was TOO MUCH. Too much

for me and too much for so I then began to work on a way to resolve

it. I liked all the SLP and didn't really want to cut anyone out so I decided to

consolidate the 2 half hour sessions we were getting in a week from several of

our therapists and made them into 1 hour sessions instead..(less

traveling but same amount of time in therapy!) My daughter is tolerating it very

well..actually she does better with the longer sessions I think.

RIght around the time we began to go to Wolfson's, I also began communication

with the e School for the Deaf in ville. (my daughter is not deaf

but I had heard that it could be beneficial for her to go to a deaf school that

focuses on teaching children to speak) Long story short..we have been going to

therapies at e and my daughter has begun school there (only a half hour a

week at this point but it is expected to be increased) I LOVE THIS SCHOOL!!!!

I can not say enough great things about e and the people working there.

They really know what they are doing and are so caring and involved. My daughter

has blossomed since going there. I actually ended up not taking her to Wolfson's

anymore since e's provided basically the same thing, as Wolfson's was

predominantly oral motor exercises, and both places are over an hour away from

me. In addition School I began giving my daughter Omega 3-6-9 in January

and have seen her speech really take off. She using intonation much more now.

She has added several word approximations (ni ni for night night, up, wa wa for

water, my or should i say MY MY!! for mine lol, neh for no, thu thu for brother,

ganma for grandma (although she doesn't say this regularly), and in addition to

that she now says most of the consonant sounds on request and most of the short

vowel sounds. She can now say " oo " with the help of using a tube in her mouth to

help shape her mouth correctly. she says ah da for all done and ah wa for I want

and she says papa and she has begun saying the ending sounds when asked to

repeat words she doesn't say yet..ie: when asked to say dog she will say the G

sound.

It is just freaking amazing!!!

I am so so happy I can't even put it into words. She does still struggle and

grope to find the sounds but back around December all she was saying for

words/approximations was mama, baby and yes..she was saying some consonant

sounds, if I remember correctly, but wasn't able to repeat on request hardly

anything and never able to repeat any words at all. I honestly think the Omega

3-6-9's have had a huge part to play in her progress. The therapists agree.

Not only has her speech improved her other soft signs have improved also. She

doesn't walk as awkward now due to the fact that her hypotonia in her trunk

muscles has improved. She is now able to imitate drawing lines and sometimes

circles(this is her newest accomplishment-way to go Lizzie girl!!! I am so proud

of you!!!!!!) Her chewing and swallowing have also improved.

So all in all we are doing fantastic. I can never ever say thank you enough for

all the help we have gotten from so many over the internet. I feel like such a

huge weight has been lifted from my shoulders and that I can finally breather

and that we are on the right track now.

For others that are in the ville, FL area, I just wanted to say that I

would recommend checking into the e

school and trying the Omega's I am using ProEFA(I give her 1 cap daily) ordered

from Nordic Naturals online but before I got that I was using some from a local

health food store for about 2 months and that was working also. Her attention

span improved significantly after beginning the Omegas. Sorry for any

typos..don't really have time to go back and sp check..time for the kids to wake

up soon...just wanted to update and pass on info that could be

helpful to anyone else.

is also now on the waiting list for neurodev. ped Dr Childers..approx

12 months i was told and are being referred to see Dr Siddiqui who is (form what

I am being told) the other local neurodevelopmental ped in the area) Supposedly

the waiting list is shorter for him..I will keep y'all posted on whether that it

true or not.

now has SSI also which surely helps in getting

her the things she needs and to pay for gas to get to the appts

She also uses sign language to communicate and is on a list to be evaluated for

an assisted communication device through her IEP.

In addition to her therapies I also work with her at least once a day. and try

to work in speech into all areas of out life when possible.

Hope everyone else is doing great..you all are in my prayers daily

mom to -3.5 suspected global apraxia

Luke-5 suspected PDD-NOS and/or Bipolar

Kurt and -23

[Guest guest]

I'm new and (still!) I need to introduce myself but I think I've read the email

posted. I was so happy to read her update, even if it was the first time I

'met' her!

I think the message somehow got missed amongst other that day. Here it is (if it

is the one you're talking about):

[ ] update..haven't posted in a while

Hi everyone. Since I haven't posted in a bit and had the ever elusive bit of

free time I figured I would let everyone know how we are doing. First off,

thanks to so many people who generously gave of their time and knowledge to help

my dughter and I, we are now on what I believe to be the " right track " YIPEEE

I spoke with Terri McDearman from Wolfson's(ville, FL) who then referred

us to a SLP exp in apraxia named Judy Hammerneisly (SP?) who also works at

Wolson'e but at a location that is closer to me. She is wonderful and through

seeing her I was

able to at last get a diagnosis (somewhat) for my daughter. She was diagnosed as

probable CAS with it being explained to me that she didn't say enough words to

provide a definitive diagnosis at this point. Soo..we went to Woflson's for a

while and began reaping the benefits of some oral motor therapy. Also at this

time my daughter was having other speech therapy and OT and PT which amounted to

13 therapies a week!! Some of them over an hour away..it was TOO MUCH. Too much

for me and too much for so I then began to work on a way to resolve

it. I liked all the SLP and didn't really want to cut anyone out so I decided to

consolidate the 2 half hour sessions we were getting in a week from several of

our therapists and made them into 1 hour sessions instead..(less

traveling but same amount of time in therapy!) My daughter is tolerating it very

well..actually she does better with the longer sessions I think.

RIght around the time we began to go to Wolfson's, I also began communication

with the e School for the Deaf in ville. (my daughter is not deaf

but I had heard that it could be beneficial for her to go to a deaf school that

focuses on teaching children to speak) Long story short..we have been going to

therapies at e and my daughter has begun school there (only a half hour a

week at this point but it is expected to be increased) I LOVE THIS SCHOOL!!!!

I can not say enough great things about e and the people working there.

They really know what they are doing and are so caring and involved. My daughter

has blossomed since going there. I actually ended up not taking her to Wolfson's

anymore since e's provided basically the same thing, as Wolfson's was

predominantly oral motor exercises, and both places are over an hour away from

me. In addition School I began giving my daughter Omega 3-6-9 in January

and have seen her speech really take off. She using intonation much more now.

She has added several word approximations (ni ni for night night, up, wa wa for

water, my or should i say MY MY!! for mine lol, neh for no, thu thu for brother,

ganma for grandma (although she doesn't say this regularly), and in addition to

that she now says most of the consonant sounds on request and most of the short

vowel sounds. She can now say " oo " with the help of using a tube in her mouth to

help shape her mouth correctly. she says ah da for all done and ah wa for I want

and she says papa and she has begun saying the ending sounds when asked to

repeat words she doesn't say yet..ie: when asked to say dog she will say the G

sound.

It is just freaking amazing!!!

I am so so happy I can't even put it into words. She does still struggle and

grope to find the sounds but back around December all she was saying for

words/approximations was mama, baby and yes..she was saying some consonant

sounds, if I remember correctly, but wasn't able to repeat on request hardly

anything and never able to repeat any words at all. I honestly think the Omega

3-6-9's have had a huge part to play in her progress. The therapists agree.

Not only has her speech improved her other soft signs have improved also. She

doesn't walk as awkward now due to the fact that her hypotonia in her trunk

muscles has improved. She is now able to imitate drawing lines and sometimes

circles(this is her newest accomplishment-way to go Lizzie girl!!! I am so proud

of you!!!!!!) Her chewing and swallowing have also improved.

So all in all we are doing fantastic. I can never ever say thank you enough for

all the help we have gotten from so many over the internet. I feel like such a

huge weight has been lifted from my shoulders and that I can finally breather

and that we are on the right track now.

For others that are in the ville, FL area, I just wanted to say that I

would recommend checking into the e

school and trying the Omega's I am using ProEFA(I give her 1 cap daily) ordered

from Nordic Naturals online but before I got that I was using some from a local

health food store for about 2 months and that was working also. Her attention

span improved significantly after beginning the Omegas. Sorry for any

typos..don't really have time to go back and sp check..time for the kids to wake

up soon...just wanted to update and pass on info that could be

helpful to anyone else.

is also now on the waiting list for neurodev. ped Dr Childers..approx

12 months i was told and are being referred to see Dr Siddiqui who is (form what

I am being told) the other local neurodevelopmental ped in the area) Supposedly

the waiting list is shorter for him..I will keep y'all posted on whether that it

true or not.

now has SSI also which surely helps in getting

her the things she needs and to pay for gas to get to the appts

She also uses sign language to communicate and is on a list to be evaluated for

an assisted communication device through her IEP.

In addition to her therapies I also work with her at least once a day. and try

to work in speech into all areas of out life when possible.

Hope everyone else is doing great..you all are in my prayers daily

mom to -3.5 suspected global apraxia

Luke-5 suspected PDD-NOS and/or Bipolar

Kurt and -23

[Guest guest]

Madeline you are our hero!!! (and tag you are it to introduce yourself Ms.

Hero!)

I did miss this email from , guess a few of us did, and I'm so happy she

didn't have to rewrite it because you found it!!

we haven't talked about preschools for the hearing impaired in awhile

but you probably heard about it from me as I have been encouraging this type of

preschool for apraxia back since....1999? I too am a number one fan of schools

for the hearing impaired for hearing apraxic children (and of course for hearing

impaired apraxic children as well) and if you check the archives it's on my list

since day one of things to do which is one of the reasons I couldn't wait to

read your update! From what I read e School for the Deaf is oral based

-just like Summit Speech School where Tanner went.

So much great news and things to read but one ouch was the name CAS. Please

don't let anyone put CAS or childhood apraxia of speech on your preschool

child's report as while at 3 it's not a biggie -it becomes a destructive

diagnosis name if your child actually is apraxic. Imagine a 14 year old or HS

student with an IEP that states " childhood apraxia of speech " ! See you don't

think about that -but trust me time goes quick and my 3 year old is now 12 for

example...even at I think 7 or 9 I have in the archives he didn't want to be

called a child -he wanted to be called a " young man " Well and now that he's

like 5 foot 6 that's not a problem!

Anyway, while one overcomes apraxia; like stuttering it's an impairment that may

be more obvious when the individual is stressed or tired or sick or trying to

use new complex words in a complex thought -like say school age. It's good to

be aware of that so that your older apraxic student isn't judged on verbal

output (notice I didn't say older childhood apraxia of speech student- how

lame!)

If I were you I'd think about a trip to Georgia or the Carolinas where there are

more children with apraxia and thus you should be able to find more

knowledgeable professionals for a second opinion. There are in the archives 4

and even 7 year old children first diagnosed with apraxia at an older age and

still essentially nonverbal..so why were these children not diagnosed earlier?

Since apraxia is suspected it's also great you are seeing a neurdevelopmental

medical doctor but hope the doctor is knowledgeable about apraxia and the soft

signs we typically see in today's apraxic children:

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

(again you can always drive a bit North?) Does your child (I can't remember)

have any signs of oral apraxia?

http://www.cherab.org/information/speechlanguage/oralapraxia.html And since I

have those two here are the signs of verbal apraxia..and yes my child was

diagnosed while still essentially nonverbal:

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

Keep in mind that once on the right formula of fish oils that children with

apraxia no longer present the same way -they progress much quicker, can repeat

on command, and lost some of the " soft signs " for just some examples.

About the Omega 359 and ProEFA; wish to clarify for the new people that whilst

Omega 369 and ProEFA are the same things in regards to if they both are from the

company Nordic naturals -the Omega 359 is the store brand. ProEFA is not sold

in stores as it's the professional line only available in medical professional

offices or online like http://www.speech411.com And it gets a wee bit more

confusing...you see there are products out there called Omega 369 or ProEFA that

are not the correct formula and made by a different company -so make sure if you

get either it's made by Nordic.

Outside of the CAS and the lack of diagnosis after 3 years old -the rest of

your email was music to my eyes to read! (pardon the pun!) How awesome that you

are seeing so much progress!! Congratulations on how far she has come!!

Professionally don't you provide music therapy? If so have you utilized that in

your daughter's therapy and how? Would love to hear that as well

So glad to read the update, happy Madeline found it..and even more thrilled it's

such a happy one!!!

=====

[Guest guest]

I agree Madeline saved the day!!! YEAH

oops..it was my mistake to write CAS ( I was trying to save time by using

abbreviations..The SLP did actually write apraxia not childhood apraxia of

speech ( I would have stopped her since I had already read your posts about that

subject) ---you really are simply amazing..Dealing with all you have dealt with

and still starting this site and helping others. I feel like you are my mentor

even though we have never met in person. One day I will have to take a drive to

Palm Beach and finally meet you! I think it is only about 4 hours from me

And yes..I DID get the idea for trying out the oral auditory school from reading

the info about it from this site! THANKS!!! I can't wait to see what happens

when she begins going full time. It is an exciting time for us.

I wasn't aware about there being more apraxic children in GA or the Carolinas..I

will check into that to try to get an actual apraxia diagnosis. It will help me

when I petition to get the public school system to contract out to cover the

cost for e school next year. Do you know of any good SLP or Dr's there who

could help diagnose her? I could also head down south your way..I have lots of

family down there so that would be easier for me than heading north. Do you

think someone down your way could help us?

As far as the neurodevelopmental peds..I know that Dr Childers at least knows

about apraxia (not sure how exp he is exactly but I do know that others from the

florida apraxia group have gone to him) The other one with the shorter

waiting list, well I don't know much about him yet..I am still checking him out.

I plan on getting her onto each waiting list and we'll see who takes her first

and then if I am not satisfied we will just wait out turn to be seen by the

other Dr

Liz does have many of the soft signs and signs of both oral and verbal apraxia.

(the things that I am going to list that she recently began doing have been

since she began taking the Omegas) She just began being able to stick her tongue

out and also to sometimes lick icing from one side of her mouth but she isn't

able to lick anything off of the top of her mouth. She isn't able to imitate

funny faces. She just began being able to blow out candles and blow bubbles. She

isn't able to bite her lower lip. She bites straws and has always overstuffed

her mouth with food. (now, if she is reminded to do so, she will take small

bites) She has always had difficulties with eating..her chewing pattern is

immature, many times she swallows food whole and also as an infant she couldn't

maneuver her tongue out of the way to take the food off of the spoon..I had to

use the spoon to press her tongue down to get the food into her mouth. Like

Tanner, it took Liz forever to say anything other than the word ba. Liz never

babbled as an infant/early toddler. She couldn't repeat anything back to you

with any consistency until she began the omegas. She had a few " pop out words "

where she would say a word clearly once or one time for a whole day but then

never said the word again. Her SLP say that she is inconsistent in the order of

her sounds..she can say some of the later developing sounds but isn't able to

say sounds that usually come earlier in development. Also she can say sounds

one day and then the next day might not be able to say the same sound. She has

recently (as she is trying more and more to talk) begun what is called groping

where she moves her mouth and tongue around trying to make a word but not able

to quite figure it out. It is so sad..breaks my heart..she tries so hard..you

know..it shouldn't have to be such a struggle just to say a word. All of our

kids who are battling this are such fighters! I admire them. Liz's receptive

language is much higher than her expressive language. She can recognize things

that most 3.5 yr old do and I verify this by doing flashcards with her where she

picks out the right items. She also has picked up on signing amazingly fast.

Liz is also very good at figuring out ways to get her point across. She

gestures and points and will take me over to what ever she wants or makes up a

sign similar to what she wants. Liz, like Tanner, also uses the same word with

different inflections when she is trying to talk. She will get this intent look

on her face and her voice tone becomes much softer and she will say " ba ba ba

ba? " when she is trying to ask me if she can go swimming (which she loves!) Liz

can only repeat one word/word approximation at a time, so to get her to say big

blue ball, I have to say each word separately and then wait for her to say each

word after me..she does now say approximations for some 2 word phrases such as I

want, night night and all done. Liz talks better when she is singing or not

thinking about it also. Now that she is talking more she will add vowels to the

end of some words..like instead of up she says upa sometimes. She might say a

word perfectly then be asked to repeat it again right after she just said it and

she'll change up the consonant sounds on the word the next time she repeats it.

She usually only says the beginning part of a word that she doesn't know..ex:

for mine she says my and for night she says ni. She can only very very rarely

say the long vowel sounds or sounds like oo and ow.

Some of the soft signs are that Liz has been diagnosed with hypotonia. The PT

thinks that this is why Liz walks awkwardly since her muscle tone in her trunk

is weak and she compensates by widening her feet stance for balance. She had not

picked a hand preference at 3 years old. She has eye tracking problems that are

linked to motor planning. She doesn't respond to pain in the typical

way...never cries for blood draws. She is sensory seeking in a BIG way.

Especially orally..she mouthed EVERYTHING until she was 3 and then it got a

little better but now that she is on the omegas I have noticed that she is doing

it again.I will have to keep an eye on that. I don't want to go down that road

again..poison control knew my number by heart I called them so many times!! AS

far as her sensory issues, she does much better with therapies if they integrate

something like dried beans, rice or playdough into the therapy. I have a huge

container (thank you rubbermaid!) that " Santa " brought this year and it is

filled with dried beans of every kind. The people at the store must have

thought I was a lunatic buying so many beans!! Liz will sit in the container

forever if I let her. She LOVES that thing. Cheapest gift I ever got for any of

my kids and probably the most loved gift!

Professionally I don't do music therapy. I just love music and I write it and

also play several instruments. I actually do utilize this into my daughter's

therapies at home. I write songs to work on sounds she is having trouble

getting and also songs that have a certain beat to them that I have her work on

her gross motor skills such as stomping to a beat. There are a few songs we

sing every day to try to put some more words into her motor memory. I am also

teaching her to play the piano..she is real close to knowing twinkle twinkle

little star! This helps with her pointing skills which were a huge potential

problem with trying to judge her cognitive skills. I knew she knew what they

were asking her to point to in their books but she didn't have enough control of

her motions to actually point to the write object. For Liz, the flashcards work

better because she doesn't have to point..just pick up the card...which is

easier for her.

Well I am fallin asleep here...need to catch some sleep.

Have a great night everyone

zzzzzz

>

> Madeline you are our hero!!! (and tag you are it to introduce yourself Ms.

Hero!)

>

> I did miss this email from , guess a few of us did, and I'm so happy

she didn't have to rewrite it because you found it!!

>

> we haven't talked about preschools for the hearing impaired in awhile

but you probably heard about it from me as I have been encouraging this type of

preschool for apraxia back since....1999? I too am a number one fan of schools

for the hearing impaired for hearing apraxic children (and of course for hearing

impaired apraxic children as well) and if you check the archives it's on my list

since day one of things to do which is one of the reasons I couldn't wait to

read your update! From what I read e School for the Deaf is oral based

-just like Summit Speech School where Tanner went.

>

> So much great news and things to read but one ouch was the name CAS. Please

don't let anyone put CAS or childhood apraxia of speech on your preschool

child's report as while at 3 it's not a biggie -it becomes a destructive

diagnosis name if your child actually is apraxic. Imagine a 14 year old or HS

student with an IEP that states " childhood apraxia of speech " ! See you don't

think about that -but trust me time goes quick and my 3 year old is now 12 for

example...even at I think 7 or 9 I have in the archives he didn't want to be

called a child -he wanted to be called a " young man " Well and now that he's

like 5 foot 6 that's not a problem!

>

> Anyway, while one overcomes apraxia; like stuttering it's an impairment that

may be more obvious when the individual is stressed or tired or sick or trying

to use new complex words in a complex thought -like say school age. It's good

to be aware of that so that your older apraxic student isn't judged on verbal

output (notice I didn't say older childhood apraxia of speech student- how

lame!)

>

> If I were you I'd think about a trip to Georgia or the Carolinas where there

are more children with apraxia and thus you should be able to find more

knowledgeable professionals for a second opinion. There are in the archives 4

and even 7 year old children first diagnosed with apraxia at an older age and

still essentially nonverbal..so why were these children not diagnosed earlier?

Since apraxia is suspected it's also great you are seeing a neurdevelopmental

medical doctor but hope the doctor is knowledgeable about apraxia and the soft

signs we typically see in today's apraxic children:

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

(again you can always drive a bit North?) Does your child (I can't remember)

have any signs of oral apraxia?

http://www.cherab.org/information/speechlanguage/oralapraxia.html And since I

have those two here are the signs of verbal apraxia..and yes my child was

diagnosed while still essentially nonverbal:

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

>

> Keep in mind that once on the right formula of fish oils that children with

apraxia no longer present the same way -they progress much quicker, can repeat

on command, and lost some of the " soft signs " for just some examples.

>

>

> About the Omega 359 and ProEFA; wish to clarify for the new people that whilst

Omega 369 and ProEFA are the same things in regards to if they both are from the

company Nordic naturals -the Omega 359 is the store brand. ProEFA is not sold

in stores as it's the professional line only available in medical professional

offices or online like http://www.speech411.com And it gets a wee bit more

confusing...you see there are products out there called Omega 369 or ProEFA that

are not the correct formula and made by a different company -so make sure if you

get either it's made by Nordic.

>

> Outside of the CAS and the lack of diagnosis after 3 years old -the rest of

your email was music to my eyes to read! (pardon the pun!) How awesome that you

are seeing so much progress!! Congratulations on how far she has come!!

Professionally don't you provide music therapy? If so have you utilized that in

your daughter's therapy and how? Would love to hear that as well

>

> So glad to read the update, happy Madeline found it..and even more thrilled

it's such a happy one!!!

>

> =====

>

[Guest guest]

I am so happy I found this board your daughter sounds almost

exactly like my little . She is 4 and it is so reassuring and

comforting to be able to read stories of other children and parents that are

in the same boat. Thanks!!

Anja

On Fri, Apr 17, 2009 at 10:49 PM, music_maker_68

<music_maker_68@...>wrote:

>

>

> I agree Madeline saved the day!!! YEAH

>

> oops..it was my mistake to write CAS ( I was trying to save time by using

> abbreviations..The SLP did actually write apraxia not childhood apraxia of

> speech ( I would have stopped her since I had already read your posts about

> that subject) ---you really are simply amazing..Dealing with all you have

> dealt with and still starting this site and helping others. I feel like you

> are my mentor even though we have never met in person. One day I will have

> to take a drive to Palm Beach and finally meet you! I think it is only about

> 4 hours from me

>

> And yes..I DID get the idea for trying out the oral auditory school from

> reading the info about it from this site! THANKS!!! I can't wait to see what

> happens when she begins going full time. It is an exciting time for us.

>

> I wasn't aware about there being more apraxic children in GA or the

> Carolinas..I will check into that to try to get an actual apraxia diagnosis.

> It will help me when I petition to get the public school system to contract

> out to cover the cost for e school next year. Do you know of any good

> SLP or Dr's there who could help diagnose her? I could also head down south

> your way..I have lots of family down there so that would be easier for me

> than heading north. Do you think someone down your way could help us?

>

> As far as the neurodevelopmental peds..I know that Dr Childers at least

> knows about apraxia (not sure how exp he is exactly but I do know that

> others from the florida apraxia group have gone to him) The other one

> with the shorter waiting list, well I don't know much about him yet..I am

> still checking him out. I plan on getting her onto each waiting list and

> we'll see who takes her first and then if I am not satisfied we will just

> wait out turn to be seen by the other Dr

>

> Liz does have many of the soft signs and signs of both oral and verbal

> apraxia. (the things that I am going to list that she recently began doing

> have been since she began taking the Omegas) She just began being able to

> stick her tongue out and also to sometimes lick icing from one side of her

> mouth but she isn't able to lick anything off of the top of her mouth. She

> isn't able to imitate funny faces. She just began being able to blow out

> candles and blow bubbles. She isn't able to bite her lower lip. She bites

> straws and has always overstuffed her mouth with food. (now, if she is

> reminded to do so, she will take small bites) She has always had

> difficulties with eating..her chewing pattern is immature, many times she

> swallows food whole and also as an infant she couldn't maneuver her tongue

> out of the way to take the food off of the spoon..I had to use the spoon to

> press her tongue down to get the food into her mouth. Like Tanner, it took

> Liz forever to say anything other than the word ba. Liz never babbled as an

> infant/early toddler. She couldn't repeat anything back to you with any

> consistency until she began the omegas. She had a few " pop out words " where

> she would say a word clearly once or one time for a whole day but then never

> said the word again. Her SLP say that she is inconsistent in the order of

> her sounds..she can say some of the later developing sounds but isn't able

> to say sounds that usually come earlier in development. Also she can say

> sounds one day and then the next day might not be able to say the same

> sound. She has recently (as she is trying more and more to talk) begun what

> is called groping where she moves her mouth and tongue around trying to make

> a word but not able to quite figure it out. It is so sad..breaks my

> heart..she tries so hard..you know..it shouldn't have to be such a struggle

> just to say a word. All of our kids who are battling this are such fighters!

> I admire them. Liz's receptive language is much higher than her expressive

> language. She can recognize things that most 3.5 yr old do and I verify this

> by doing flashcards with her where she picks out the right items. She also

> has picked up on signing amazingly fast. Liz is also very good at figuring

> out ways to get her point across. She gestures and points and will take me

> over to what ever she wants or makes up a sign similar to what she wants.

> Liz, like Tanner, also uses the same word with different inflections when

> she is trying to talk. She will get this intent look on her face and her

> voice tone becomes much softer and she will say " ba ba ba ba? " when she is

> trying to ask me if she can go swimming (which she loves!) Liz can only

> repeat one word/word approximation at a time, so to get her to say big blue

> ball, I have to say each word separately and then wait for her to say each

> word after me..she does now say approximations for some 2 word phrases such

> as I want, night night and all done. Liz talks better when she is singing or

> not thinking about it also. Now that she is talking more she will add vowels

> to the end of some words..like instead of up she says upa sometimes. She

> might say a word perfectly then be asked to repeat it again right after she

> just said it and she'll change up the consonant sounds on the word the next

> time she repeats it. She usually only says the beginning part of a word that

> she doesn't know..ex: for mine she says my and for night she says ni. She

> can only very very rarely say the long vowel sounds or sounds like oo and

> ow.

>

> Some of the soft signs are that Liz has been diagnosed with hypotonia. The

> PT thinks that this is why Liz walks awkwardly since her muscle tone in her

> trunk is weak and she compensates by widening her feet stance for balance.

> She had not picked a hand preference at 3 years old. She has eye tracking

> problems that are linked to motor planning. She doesn't respond to pain in

> the typical way...never cries for blood draws. She is sensory seeking in a

> BIG way. Especially orally..she mouthed EVERYTHING until she was 3 and then

> it got a little better but now that she is on the omegas I have noticed that

> she is doing it again.I will have to keep an eye on that. I don't want to go

> down that road again..poison control knew my number by heart I called them

> so many times!! AS far as her sensory issues, she does much better with

> therapies if they integrate something like dried beans, rice or playdough

> into the therapy. I have a huge container (thank you rubbermaid!) that

> " Santa " brought this year and it is filled with dried beans of every kind.

> The people at the store must have thought I was a lunatic buying so many

> beans!! Liz will sit in the container forever if I let her. She LOVES that

> thing. Cheapest gift I ever got for any of my kids and probably the most

> loved gift!

> Professionally I don't do music therapy. I just love music and I write it

> and also play several instruments. I actually do utilize this into my

> daughter's therapies at home. I write songs to work on sounds she is having

> trouble getting and also songs that have a certain beat to them that I have

> her work on her gross motor skills such as stomping to a beat. There are a

> few songs we sing every day to try to put some more words into her motor

> memory. I am also teaching her to play the piano..she is real close to

> knowing twinkle twinkle little star! This helps with her pointing skills

> which were a huge potential problem with trying to judge her cognitive

> skills. I knew she knew what they were asking her to point to in their books

> but she didn't have enough control of her motions to actually point to the

> write object. For Liz, the flashcards work better because she doesn't have

> to point..just pick up the card...which is easier for her.

>

> Well I am fallin asleep here...need to catch some sleep.

> Have a great night everyone

> zzzzzz

>

>

>

> >

> > Madeline you are our hero!!! (and tag you are it to introduce yourself

> Ms. Hero!)

> >

> > I did miss this email from , guess a few of us did, and I'm so

> happy she didn't have to rewrite it because you found it!!

> >

> > we haven't talked about preschools for the hearing impaired in

> awhile but you probably heard about it from me as I have been encouraging

> this type of preschool for apraxia back since....1999? I too am a number one

> fan of schools for the hearing impaired for hearing apraxic children (and of

> course for hearing impaired apraxic children as well) and if you check the

> archives it's on my list since day one of things to do which is one of the

> reasons I couldn't wait to read your update! From what I read e School

> for the Deaf is oral based -just like Summit Speech School where Tanner

> went.

> >

> > So much great news and things to read but one ouch was the name CAS.

> Please don't let anyone put CAS or childhood apraxia of speech on your

> preschool child's report as while at 3 it's not a biggie -it becomes a

> destructive diagnosis name if your child actually is apraxic. Imagine a 14

> year old or HS student with an IEP that states " childhood apraxia of

> speech " ! See you don't think about that -but trust me time goes quick and my

> 3 year old is now 12 for example...even at I think 7 or 9 I have in the

> archives he didn't want to be called a child -he wanted to be called a

> " young man " Well and now that he's like 5 foot 6 that's not a problem!

> >

> > Anyway, while one overcomes apraxia; like stuttering it's an impairment

> that may be more obvious when the individual is stressed or tired or sick or

> trying to use new complex words in a complex thought -like say school age.

> It's good to be aware of that so that your older apraxic student isn't

> judged on verbal output (notice I didn't say older childhood apraxia of

> speech student- how lame!)

> >

> > If I were you I'd think about a trip to Georgia or the Carolinas where

> there are more children with apraxia and thus you should be able to find

> more knowledgeable professionals for a second opinion. There are in the

> archives 4 and even 7 year old children first diagnosed with apraxia at an

> older age and still essentially nonverbal..so why were these children not

> diagnosed earlier? Since apraxia is suspected it's also great you are seeing

> a neurdevelopmental medical doctor but hope the doctor is knowledgeable

> about apraxia and the soft signs we typically see in today's apraxic

> children:

>

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html(ag\

ain you can always drive a bit North?) Does your child (I can't remember)

> have any signs of oral apraxia?

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

> since I have those two here are the signs of verbal apraxia..and yes my

> child was diagnosed while still essentially nonverbal:

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

> >

> > Keep in mind that once on the right formula of fish oils that children

> with apraxia no longer present the same way -they progress much quicker, can

> repeat on command, and lost some of the " soft signs " for just some examples.

> >

> >

> > About the Omega 359 and ProEFA; wish to clarify for the new people that

> whilst Omega 369 and ProEFA are the same things in regards to if they both

> are from the company Nordic naturals -the Omega 359 is the store brand.

> ProEFA is not sold in stores as it's the professional line only available in

> medical professional offices or online like http://www.speech411.com And

> it gets a wee bit more confusing...you see there are products out there

> called Omega 369 or ProEFA that are not the correct formula and made by a

> different company -so make sure if you get either it's made by Nordic.

> >

> > Outside of the CAS and the lack of diagnosis after 3 years old -the rest

> of your email was music to my eyes to read! (pardon the pun!) How awesome

> that you are seeing so much progress!! Congratulations on how far she has

> come!! Professionally don't you provide music therapy? If so have you

> utilized that in your daughter's therapy and how? Would love to hear that as

> well

> >

> > So glad to read the update, happy Madeline found it..and even more

> thrilled it's such a happy one!!!

> >

> > =====

> >