Recent media article on apraxia, and other reasons we need awareness!

[Guest guest]

This article is mainly about a 'four' year old nonverbal child. No

mention of types of speech therapy tried -just teaching of

augmentative ways to communicate.

~~~~~~~~~~~~~~~~~~~~~~~

" The diagnosis we have now is severe apraxia, but that tells me

nothing, " his father, ph, said. " It just means he can't talk. I

know that. It doesn't tell me why. É It's frustrating.

" If he never speaks a word, we won't love him any less. It wouldn't

change how we feel at all. But if we knew that, we could shift the

focus from his speaking to finding other ways to communicate. "

And that is exactly what the instructors, aides and therapists are

working on at the Early Childhood Center. "

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And if that quote wasn't enough -wait until you read this one from

the same article! It's so apparent that intellegent or not -some

parents and professionals just don't know how to help nor advocate

for our children which is why I'm glad we are moving ahead to have

laws to protect our children in place -which will raise awareness.

Two years in this program and:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

" We've tried all sorts or alternatives with , " she said. " He's

definitely a bigger challenge, but he's going to be a success

story. "

Picture books and other methods work for a bit, but do not seem to

last, so now, based on recommendations from a neurologist and

psychologist and the nod to move forward from his mom and dad,

is using a small computer-like device that has picture folders that

hold every activity or lesson he needs to do in it. He just has to

push the correct button and it speaks for him.

Tackett keeps watch over 's use of the device, holding it for

him while he engages in other activities so the teachers can

encourage him to speak or use other expressive behaviors such as

pointing to communicate his wants and needs. Today, he is grunting

and whimpering a bit, but the meaning is unclear.

Celebrate small victories

This is 's second year in Oak Creek's Early Childhood program.

has been involved in other Birth-to-3 programs, with little

success. Here, too, the progress is slow.

But there is progress, and right now, that is something to hold

onto, Breier said. It is what parents are looking for when they come

here.

http://www.zwire.com/news/newsstory.cfm?newsid=10474864 & title=BREAKING%20THROUGH\

%0AEarly%20Childhood%20Center%20goal%20to20b... & BRD=1352 & PAG=461 & CATNAME=Top%20S\

tories & CATEGORYID=410

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

True -we as parents are looking for progress. I guess " progress " is

all relevant however. One man's ceiling is another man's floor. I

personally would not view what they wrote in this article as any

type of progress -in fact to me it appears unless all therapy

methods are left out that were attempted -this program has been

detrimental in that precious time was and is being wasted.

Unless there are other issues -this four year old should have been

talking more than in grunts long ago. Two years in this program and

he's only able to grunt? 3 to 6 months max with no progress and you

should look to switch therapy methods/therapists and/or programs.

Perhaps I'm the only one that feels this way. What do you guys

think?

=====

[Guest guest]

I agree with you. I think this would have happened to if I

didn't fight for her. I first went to early intervention, and they

said she didn't qualify (I think I could get it now but didn't have

the resources then). After 6 months of private speech therapy and

no progress, I switched to the special ed preschool and to the

ish Rite speech therapy.

would have made no progress in the special ed preschool class,

and I think they would have recommended a augmentative communication

device. I think that was the easy way out.

Thank God, the ish Rite therapist was a dream come true. I

also found links on the web about apraxia and started educating

myself. We started oral motor therapy. We insisted on a MRI from

the neurologist to see if she had brain damage. We did the Pro-EFA.

It's been years, and I'm still trying to figure everything out. If

plateaus for more than a few months, then I start something

else.

I just feel sorry for the kids whose parents just blindly follow

their schools/doctors/therapist advice.

[Guest guest]

I believe that there was a lack of progress because the parents sound content to

leave things as is...They don't seem to be much into fighting or being

aggressive for the sake of their child, and look how much time was waisted...Or

perhaps they don't know any better and are just letting those who " Know " guide

them, and unfortunately waist their child's precious time. I just don't

understand how people can call themselves professionals when they are not.

Judy

kiddietalk <kiddietalk@...> wrote:

This article is mainly about a 'four' year old nonverbal child. No

mention of types of speech therapy tried -just teaching of

augmentative ways to communicate.

~~~~~~~~~~~~~~~~~~~~~~~

" The diagnosis we have now is severe apraxia, but that tells me

nothing, " his father, ph, said. " It just means he can't talk. I

know that. It doesn't tell me why. É It's frustrating.

" If he never speaks a word, we won't love him any less. It wouldn't

change how we feel at all. But if we knew that, we could shift the

focus from his speaking to finding other ways to communicate. "

And that is exactly what the instructors, aides and therapists are

working on at the Early Childhood Center. "

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And if that quote wasn't enough -wait until you read this one from

the same article! It's so apparent that intellegent or not -some

parents and professionals just don't know how to help nor advocate

for our children which is why I'm glad we are moving ahead to have

laws to protect our children in place -which will raise awareness.

Two years in this program and:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

" We've tried all sorts or alternatives with , " she said. " He's

definitely a bigger challenge, but he's going to be a success

story. "

Picture books and other methods work for a bit, but do not seem to

last, so now, based on recommendations from a neurologist and

psychologist and the nod to move forward from his mom and dad,

is using a small computer-like device that has picture folders that

hold every activity or lesson he needs to do in it. He just has to

push the correct button and it speaks for him.

Tackett keeps watch over 's use of the device, holding it for

him while he engages in other activities so the teachers can

encourage him to speak or use other expressive behaviors such as

pointing to communicate his wants and needs. Today, he is grunting

and whimpering a bit, but the meaning is unclear.

Celebrate small victories

This is 's second year in Oak Creek's Early Childhood program.

has been involved in other Birth-to-3 programs, with little

success. Here, too, the progress is slow.

But there is progress, and right now, that is something to hold

onto, Breier said. It is what parents are looking for when they come

here.

http://www.zwire.com/news/newsstory.cfm?newsid=474864 & title==BREAKING%20THROUGH\

%0AEarly%20Childhood%20Center%20goal%20to20b... & BRD=52 & PAG=F1 & CATNAME==Top%20St\

ories & CATEGORYID=A0

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

True -we as parents are looking for progress. I guess " progress " is

all relevant however. One man's ceiling is another man's floor. I

personally would not view what they wrote in this article as any

type of progress -in fact to me it appears unless all therapy

methods are left out that were attempted -this program has been

detrimental in that precious time was and is being wasted.

Unless there are other issues -this four year old should have been

talking more than in grunts long ago. Two years in this program and

he's only able to grunt? 3 to 6 months max with no progress and you

should look to switch therapy methods/therapists and/or programs.

Perhaps I'm the only one that feels this way. What do you guys

think?

=========

[Guest guest]

Hi -- I definitely agree that the family needs some resources on

apraxia to read/look over... however, I will say that in our

district, we did have one boy who was SO severely apraxic, that we

even brought over several of the " big names " in apraxia and motor

therapy to consult on him in person, and each time, each of them

said " wow, I've never ever seen a child this severe before " . He had

several therapists in district and each tried different methods over

the years and nothing worked. Again, even the " big name " therapists

could not help him either. He never did get over the apraxia. He

never became verbal.

So while this appears to be very rare in terms of the severity and

lack of response to treatment, I just want to point out that it

*could* be a possibility.

I think the advice you have given is very good though-- if no

progress after six months, time to start looking for another

therapist! As a parent, I would never stop looking or trying to help

my child become verbal. :-) Augmentative devices can help, but

nothing ever can replace verbal communication in my book!

W

>

>

> Unless there are other issues -this four year old should have been

> talking more than in grunts long ago. Two years in this program

and

> he's only able to grunt? 3 to 6 months max with no progress and

you

> should look to switch therapy methods/therapists and/or programs.

>

> Perhaps I'm the only one that feels this way. What do you guys

> think?

>

>

[Guest guest]

I agree there are those rare cases. But first and last -I say when

a child is not progressing -are they on the right formula of EFAs in

addition to the right mulitsensory therapies?

Actually however Mauri's son Ari 'was' one of those cases up till 9 years

old...when she first tried the ProEFA. (Mauri runs the Children's Apraxia

Network of PA and NJ) For the first time in his life -he was able to talk and

the school could not believe it was the same child!

Tanner too, in spite of all multisensory therapy approaches and private

one on one therapy two to three times a week for 30 to 45 minute

sessions at a well respected hospital had very little to no

progression prior to EFAs. (was able to say simple sounds with prompting -but

could not put any of them together. For the most part only

said " mmm " )

I am 100% convinced not a doubt in my mind that if Tanner was not

put on EFAs -he would not have gone back to almost where he was

before the regression -we would have lost him and he would still be

very impaired globally.

Tanner did not just have speech apraxia -he had low tone throughout

his body -motor planning deficits in his body -and sensory

integration dysfunction. He had obvious oral apraxia as well.

Unfortunately all including us viewed Tanner as " normal " and all his

warning signs were explained away...until we took him to a

neurodevelopmental MD. Another thing this dad probably doesn't know

about.

Tanner's changes on/and off, the right EFAs were/are just amazing -

and within days. Unfortunately unless you are a member of this

group -you may actually read at this one grouplist when someone

questions why their therapist asked them if they looked into fish

oils yet " In fact, I think ASHA might find this unethical per their

national ethical standards. " (thank you to the many horrified

people that sent that to me) which is why I said this person gets to

play the role of the " other " group who discriminated against

Lorenzo's parents and the oil therapy they found to help their son

and others in 'our' Lorenzo's Oil movie.

I have a hunch that the father in question either didn't find any

support group -or only found the other main one for apraxia. Either

way in those cases - then he would not know about CHERAB, or The

Late Talker book, or the neuroMDs involved, nor the importance of

exploring EFAs, multi sensory approaches, schools for the hearing

impaired, having MDs involved in the evaluation and advocacy of your

child.

I did put in a call to Kujawa, from the school district to fill her in

just in case. She was not in so I left a message ...

" Parents who have concerns about how their children are developing

can have a screening done by the Oak Creek-lin School District

as soon as the child turns 3, Kujawa, director of pupil

services, said. " The whole article can be viewed at

http://www.zwire.com/news/newsstory.cfm?newsid=10474864 & title=BREAKING%20THROUGH\

%0AEarly%20Childhood%20Center%20goal%20to%20b... & BRD=1352 & PAG=461 & CATNAME=Top%20\

Stories & CATEGORYID=410

Here are just a few of my first email about Tanner and EFAs for

those that were not around on the other list four years ago

Subject:

Help for Tanner!

Date:

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

Other Parents:

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

diagnosed

today with apraxia after 4 months of speech therapy at a hospital.

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

concerned about

how quiet he was, our pediatrician wasn't. She didn't see any

reason for

concern at that time since he was always very bright and his

comprehension was

excellent. Undaunted, we pushed to get a hearing and speech

evaluation done

anyway. It was like pulling teeth! On a suggestion from Tanner's

speech

therapist to get him evaluated, Tanner was also just recently

accepted into the

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

name is

" Cherub Boy " since that is what he looks like) in every other way,

looks and

acts normal (and has tested above average.)

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

made great

improvements on imitating basic simple sounds. Unfortunately, other

than some

basic sounds he will now mimic if prompted, he is not attempting to

say words

yet. For the most part he is quiet and observant. If you say " 1,

2, 3, a, b,

c " to Tanner, he may try to imitate you, but it will be the

inflection of the

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

Tanner

communicates all the time.

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

showed any facial

expressions. Now, with the small amount of therapy he has had, he

noticeably

smiles frequently and can for the first time blow bubbles!

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

very high

fever each time. Is there any evidence that a high fever may cause

apraxia?

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

is able to

teach speech to deaf children be useful to him in addition to his

other

therapies?

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

or

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

a local

support group. It's comforting to know that this condition has been

resolved

successfully by others. From what we've read on the subject, most

of the

children at Tanner's age at least try to talk, does Tanner's

condition sound

severe? Or, maybe a better question,

was your child, or those you work with, similar at some point?

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

with

being on the regular list?

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

curiosity, does

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

it's not

that common.

Best!

and Glenn

Re: [APRAX] Help for Tanner!

Date:

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

Hi ,

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

the

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

can let

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

except

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

though

if he starts reciting War and Peace next week!

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

out there.

Mom to Dakota 4.8 and Tanner 2.9 (apraxia)

Subject:

Re: lellow!!!!

Date:

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

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

learns a word, than calls

everything that one word until he is corrected-That is Tanner now!

He's walking around for almost

24 hours now saying lellow over and over. But, he is trying so

hard! When you say a new word,

he tries to say it too! Efalex really works !

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

next Wednesday? Someone named

who lives close to me from the other apraxia network (the one

from Hawaii) wants to get

together too. I told her about next Wednesday. I was wondering if

maybe my house would be

good, if I'm in the middle. Am I? Where does Debi live again? It

doesn't matter though, Dakota

doesn't have school next week.

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

working. People on this list

probably think I work for Enfomal or something!

Talk to you later!

Wow Tanner!!!!!!!!!!! That's FANTASTIC!!!!!!!!!!!! Guess I'll

have to run out and buy this stuff!!!!!!! I am

so happy for you, & Glenn, and for you Tanner!!!! This just

made my day!!!!!!!!! Thanks for

sharing.... go Tanner!!!!!!!!! YEA!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Subject:

Efalex update

Date:

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

Hi All and Happy Holidays!

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

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

a

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

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

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

and

Early Intervention, who just accepted him in.

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

terms, could Efalex to an apraxic child be similar to Vitamin C to

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

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

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

yet,

even though we've heard from so many of you how wonderful it is.

Tanner

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

both

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

past 2 weeks we have seen such dramatic changes that we both believe

it

to be as a result of the Efalex. We don't know if anyone else

experienced the changes as soon as we did with Tanner. Within 2

weeks

he attempted to say I love you, " I, ahh, ooo " (Before then, most of

the

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

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

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

the sound " ch " together with the sound " oo " He wasn't even

saying " Da

Da " !) The other day, Tanner pointed to the color yellow without any

prompting and said, " lellow " . Tanner is now saying quite a few more

words, and he is being consistent with what words he learns! He's

trying to talk all the time now, something he wasn't doing at all

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

you

tried to get Tanner to say a word, he would stamp his foot and say,

" mmm " in the tone of NO! Now, he loves pointing to, and saying

colors.

(Purple! Blue! etc.) His therapist is thrilled with his progress in

the past week, it's really been a remarkable improvement!

Coincidence?

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

(Putting 2 words together, etc.)

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

of

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

butter

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

of

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

push

his tongue up, but he still can't raise it enough to lick it off. We

are curious to see if that changes soon too. It's only been two and

a

half weeks for us, but we have not seen any negative side effects

from

giving Tanner the Efalex other than he still hates the taste. We

have

found cooking it in his eggs or letting it soak into his cereal or

pancakes is the only way we can give it to him without any problems.

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

have him swallow the pills if we buy them next?

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

people

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

weekend with the Holiday, especially because Tanner is starting to

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

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

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

therapy we can just in case. " They usually then say, " Oh, of

course...So what is this called again that he has? " We then give

them a

brief description of what Apraxia is and how well Tanner is doing

with

therapy.

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

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

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

=====

[Guest guest]

mmm, hmm, (nodding head in agreement) yes, I think if this boy (who

is now an adult) had the benefit of trying EFA's and other biomedical

treatments, I think the chance that he would have become verbal would

have been higher and perhaps he would have gotten to the point where

he could functionally communicate in everyday settings. That's why I

am always referring parents to the CHERAB website and research not

just for apraxic kids, but also those multisensory issues kids and

speech-delay kiddo's. I think the EFA research is valid and

definitely a tool for helping kiddo's along with appropriate therapy.

Yes, when a child doesn't make progress, it's time to re-evaluate the

situation! I wholeheartedly agree!

Thanks for the story of the 9 year old boy, too-- I will keep that

one filed away in my brain in case I ever hear of another student in

district who is older and not able to talk. I'll be sure to bring it

up that there are cases where that was changed even at a late age!

Thanks!

W

> I agree there are those rare cases. But first and last -I say

when

> a child is not progressing -are they on the right formula of EFAs

in

> addition to the right mulitsensory therapies?

>