Re: Ian's receptive language is increasing!

[Guest guest]

" I have a question regarding Apraxia/Dyspraxia and prognosis. Should

my goal be to have Ian speak at a level where nobody knows he has a

speech impairment? Is that unrealistic? "

Not a bad question to ask at all Pam -and one we all ask! Apraxia

in itself is not a cognitive disorder, so children with apraxia can

grow up to be whatever they want. If a child with verbal apraxia

also has severe global apraxia such as , and doesn't receive

appropriate therapy until the teen years, the impairment will be

noticeable both in speech and movement.

http://www.cherab.org/news/.html Even if the impairment is

just of speech, but the child doesn't receive appropriate speech

therapy until adult age such as , the impairment of speech will

be noticeable.

http://www.cherab.org/news/.html One does not just outgrow

apraxia.

Most years ago didn't receive appropriate therapy in early years.

Even still, there are also those like Khalid, now a teen and ,now an adult,

who's apraxia is not noticeable to anyone, almost

never due to interventions that began in childhood years. They have learned how

to work around the impairment. (On Khalid's

talking page from 4 years ago he is only 13 -that page needs to be updated in

that he

is much improved even from there http://www.debtsmart.com/talk/kal.html )

The brain is always able to rewire and change, so there is always

hope. Many of you today have given your children the benefit of

early intervention...and EFAs, something years ago prior to the

internet and support sources parents and professionals just didn't

know.

There really is no one answer of course, it would depend on, among

many things but including:

1. Degree of severity of the child

2. Age of diagnosis and start of therapies

3. Frequency and appropriateness of therapies

4. Willingness to participate in therapies

5. Overlapping conditions if any.

The real question however is this. If a tree falls in the woods

when nobody is around to hear it -does it make a noise? What I mean

is if the only time a child with apraxia or some other impairment of

speech lets the apraxia " show " is when around those he or she is

most comfortable with, or alone when practicing new words in a

mirror -then who cares? It's an impairment just like a hearing or

visual one. There isn't a cure yet -but doesn't mean there won't be

a cure one day.

Also...there happens to be an incredible amount of actors with motor

planning speech impairments (stuttering -but still) who are quite

famous such as Bruce Willis, Marilyn Monroe, ,

Brendon, Earl , ...and many others. As Earl

was quoted to say - " Once a stutterer always a stutterer " He's one

of the most famous spokespeople and actors with one of the most

distinct awesome voices ever! And he's not alone

http://www.stutteringhelp.org/celebrit.htm

In fact if one ever studies my theory on speech impairments and

memory. Speech impaired children have to remember what they want to

say long enough to motor plan it while most other children say

whatever they want as soon as they think it. I also believe those

with speech impairments probably would make the best actors for

another strong reason outside of memory. Motor planning they can

learn what to say and say it fluently which is a cool thing. Tanner

can read outloud much quicker than he can talk, and straight through

a book nonstop. He can't talk that well yet nonstop and fast.

Earl talks about how reading opened up a whole new

world.

"

As a child, I gave up speech. I stuttered badly, and so I retreated

and lived in a world of silence rather than speak. But I found my

voice in books and I found the expanded vocabulary that is so

important for someone who stutters.

I developed a love for science and science fiction, the tales of the

impossible. Jules Verne took me on adventures under the sea, under

the Earth, and through time itself. Through his words, through my

ability to read them, I could serve with Captain Nemo and thrive in

a variety of worlds.

I was mute to the outside world, but there were hundreds of

conversations in my head.

And that is the beauty of reading that all children discover. The

world that grown men and women discover when they, too, learn to

read. "

http://www.yourcongress.com/ViewArticle.asp?article_id=2837

I see it in my own son Tanner. He had to write the other day things

he loved the most ...and he wrote among going to Disney and playing

soccer - " I love writing sentences " (on his own!)

Now you know there are not going to be any famous celebrities with

apraxia I can list...oh wait -Barbara Walters was diagnosed as

apraxic as a child and went through 7 years of speech therapy

according to one of her producers from the View who is best friends

with a therapist who works for Sara SLP (ask Sara) Why post

it here -thanks alot Barbara for not coming out of the closet as one

of the most famous woman interviewers of all time who would bring so

much hope and awareness to so many. Then again -apraxia diagnosed

back when Barbara Walters was a child may not be what we are seeing

today on the rise in the past 10 years.

But don't fear - there is another famous celebrity with a strong

impairment of speech who is in a movie coming out this Friday we are

going to see...Scooby Doo! (the movie is Scooby Doo 2!)

http://www2.warnerbros.com/scoobydoo2/ )

Anyway -here is an archive that may hold more answers:

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

Date: Mon Feb 2, 2004 12:38 pm

Subject: Down the road and off the road/parent observed stages of

apraxia

I first wrote this over two years ago in January 2002 for inclusion

in The Late Talker as parent observed stages of apraxia viewed

through our grouplist. This list was approved by all CHERAB

advisors

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

(but needed cleaning up which I never did)

We ended up not including this in The Late Talker because even

though approved, in the final cut we needed to edit out almost 300

pages for our book, and this included awesome pages that were

already completed. Dr. Marilyn Agin, Malcolm Nicholl and I chose to

leave in only the most critical information for a parent of a newly

diagnosed apraxic child to know.

I still don't want to clean this up, or change from my original

writing from over 2 years ago -so here it is, what I still stand by

and what still needs to be studied in my opinion and what I'd travel

to hear a researcher explain:

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

" Just like typically developing speech in a child, a child with

apraxia appears from the members of our large Foundation to have

stages they go through -and some children skip one or two -or pass

through some of them quickly or get stuck in one or more of them.

We don't know if all the member's children were properly diagnosed

with apraxia or not, but this may be worth looking into.

OBSERVED APRAXIA STAGES (?) THAT SHOULD BE EXPLORED FURTHER

Stage 1

non verbal stage

Where the child uses one or two sounds to communicate everything with

gestures, and made up elaborate sign. At this stage, depending on

the infant's or child's age you may not be able to diagnose verbal

apraxia, but neurological soft signs should be looked for, as well

as signs of oral motor problems or oral apraxia. An older apraxic

child who is stuck at this stage will be using augmentative devices

and could be at risk for misdiagnosis of cognitive ability if not

tested appropriately.

Stage 2

simple talk stage

Where the child begins to just like a typically developing child

learn new sounds or words, but unlike a typically developing child,

most (not all) appear to forget how to say the sounds or words

again, so they lose that ability to " build " their speech like most

other children do. This is in most cases the only stage that is

acknowledged by ASHA and described by most of the speech

professionals*. Please see examples above (breaks down with

longer utterances, etc.) An older apraxic child who is stuck at

this stage will be using augmentative devices and could be at risk

for misdiagnosis of cognitive ability if not tested appropriately.

Stage 3

Dysfluency stage

Where the child who seemed to be progressing so well suddenly begins

to stutter. Most speech professionals do not consider

classic " stuttering " only a normal developmental dysfluency.

However with apraxic children this stage is especially frustrating

in that if the apraxic child does go through this stage, they appear

to get " stuck " here. In speaking to members from the CHERAB

Foundation who's apraxic child goes through this stage, there is

frequently another member of the family who is a stutterer, which

may mean there is some type of genetic link. Type of therapy to

provide to an apraxic child at this stage that is appropriate is not

clear and depends on which expert you speak to-in some cases there

are direct oppositional views.

Stage 4

Baby Talk stage

Where the child who is now talking and being understood continues to

mix up past and present tense, as well as sentence structure, and

frequently will leave out the " little words " like " the " and " a " .

This may not have anything to do with SLI as discussed above, an

apraxic child typically does keep sentences shorter than average,

but there may be children diagnosed in the SLI area that are

apraxic, and visa versa -and being there is a genetic link

to both SLI as well as apraxia, a closer look needs to be taken at

this stage. A five year old apraxic child who receives appropriate

therapy, including some of the recent discoveries we will talk about

later, may progress faster than previously stated, however just like

in the previous stage, apraxic children also seems to get stuck in

this stage. An example would be " Me want doe too " for " I want to

go too " or " Mommy me walk store too? " for " Mommy can I walk to the

store too? "

Stage 5

Full language stage

Where the child, teenager, or adult apraxic has learned strategies to

overcome the apraxia enough that it's not noticed by the average

listener. However upon closer observation you will notice that an

apraxic in the full language stage will frequently use less

sophisticated language. An example comes in right here. Instead of

saying " an apraxic in the full language stage will frequently use

less sophisticated language " they may say " an apraxic in the full

langwish stage will not sound as grown up most of the time " So in

other words, there will still be words that he or she can not

pronounce correctly, and being aware of them, will avoid them and

substitute when they can. They can be highly intelligent, but due

to their lack of expressing themselves using sophisticated language

at times others may not know this. This is perhaps in some ways

just as frustrating a stage as any other. In some cases maybe more

so because now that they are " talking " and talking fine most of the

time, ASHA professionals may not consider them candidates for

further services. The genetic possibilities and medical involvement

needs to establish these stages, including this one, so the

population can understand and accept this disability just like they

do for those with poor eyes or poor hearing. This is an example of

a late talker that unfortunately for all did not " just start talking "

Stage 1: Most professionals don't know how to diagnose oral or

global apraxia, or diagnose suspected verbal apraxia in this stage.

This is the way almost all professionals as well as online sources

were back in 1999 when Tanner was first diagnosed. If we knew then

what we know today through CHERAB and The Late Talker -Tanner could

have had early intervention from when he first regressed at 11

months old. Can't change that which is sad -but for that reason I

continue to do what I do to raise awareness.

Stage 2: The only stage talked about (and talked about and talked

about) This is what I call the " around the corner " stage which is

covered well...well for the most part -but still the soft signs -the

multifaceted aspects are typically left out by most -soft signs like

the hypotonia, sensory integration dysfunction (called DSI instead

of SID so as not to confuse it with the sudden infant death syndrome

which my oldest son Dakota was at risk for), oral apraxia and other

motor impairments even just mild one in other areas of the body -and

new to our attention stuff like constipation and trouble blowing

their nose on command. Just today Glenn and I were driving the

boys to school and Tanner needed to blow his nose. 'Most' of the

time now today Tanner knows how to blow his nose due to lots of

practice. But like anything with apraxia -most of the time doesn't

necessarily mean all the time. I handed Tanner a tissue and he put

it up to his nose and breathed out through his mouth. I said " No

Tanner -use your nose to breath out silly! " I then helped him and

he breathed out of his nose softly -not enough to do anything. So I

said " OK you have to breath out harder so breath in and then breath

out really deep OK? " Tanner breathed in really deep and when he

went to breath out I took the tissue and really quick stuck it up to

his nose before he could breath out -but that didn't work either

because we both started laughing. Then he sneezed.

Stage 3 and 4 -not all children go through -but too many do to leave

them out, or the child is diagnosed with something else. As I know

with Tanner through Dr. Dale -Tanner's dysfluency stage was

not classic stuttering and as Dr. said " You are correct

that we have done an injustice in not studying apraxia in children

enough yet. For this reason we don't know what is 'normal' for an

apraxic child as to how long they will stay in the developmental

stage of dysfluency, but we are finding it can be quite long "

And Stage 5 -that's the one where parents see their child as " cured "

and even though they may leave the group at stage 3-5 -most leave at

5 not realizing there are strategies for older children/teens and

adults in this stage too.

EFAs speed things up a bit so children may advance quicker -but

again EFAs are not a cure -or not a complete cure. I'd like to add

to that neither is therapy a cure. Apraxia is an impairment that

one can learn to overcome and live a successful life with. Just

like a stutterer -those that don't know may not even be aware there

was any type of impairment of speech.

=====

[Guest guest]

Congratulations on Ian's incredible progress!!

[Guest guest]

Hey Pam!

Hmmm -as I posted just the other day

" Speaking of which -you want to be sure that what your daughter has

truly is a language or receptive disorder and not just an expressive

disorder, or a combination of both receptive and expressive. Too

many communication impaired children are assumed to have receptive

disorders that do not. "

Because it's only been two weeks, I believe it's 'possible' that

there never was a receptive problem to begin with and that he was

just exhibiting frustration of not being able to communicate by

tuning others out. (withdrawing) He may still be tuning out in

therapy for some reason. Do his therapists view him (treat him) as

if he has receptive delays? How fun are his therapy sessions? Is

he 'ever' into his therapy sessions? When? Can you just for fun

try another therapist (don't mention anything about receptive

delays) and see if there are any differences?

Let us know!

Oh and PS about blowing the nose thing. The trick of apraxia is

being able to motor plan 'on command' which means they won't have

any trouble breathing in and out of their nose all day long -but

when told to blow their nose on command when a tissue is placed to

their nose -many breath in when trying to blow out! And the harder

they try to blow out -the harder they breath in sometimes!

(without the tissue the way Ian does it now -not sure how that

works!)

=====

[Guest guest]

You know, Ian LOVES his three therapists. They are very engaging

and even silly. Initially, they did treat him like he had a

receptive delay (except my OT, who treated him like he was a

genius. Have I said how much I love her?). I really believe Ian

has/had/is having some type of auditory processing problem. I

wonder if the connections are being made in the brain (via EFAs and

maturation) that weren't being made before. His receptive language

has always been inconsistent.

Since his speech exploded, the receptive exploded, too. I think

much of his receptive delay was avoidance. Ian also uses eye

contact (not having it) to avoid uncertainty and frustration. He is

such a laid back kid. Until recently, he would prefer to not get the

toy or the treat rather than try to utter the word " please "

or " truck " or whatever they were asking him to do. He would just

shrug and move on to something else.

I will be interested in how Ian does in Seattle for his eval at

Children's. So far, all involved see Ian as a puzzle... not enough

of any particular disorder to make a diagnosis. I can't believe

we've been in therapy an entire year! Looking back, it is mind

boggling how hard Ian worked to gain the prelanguage skills that

were lacking. He is a new boy!

Yesterday, Ian started to walk out the front door after our ST

session. I was talking to his SLP, so I asked him to stop. FAT

CHANCE, I thought. Well, this kid stood 'at attention!' for close

to 2 minutes while I finished my conversation. Never facing me.

Just looking outside at the trucks going down the road (she lives on

a 2 lane highway). Funny thing: he was copying the attention

stance his brother and sister use at martial arts! It was so cute.

Absolutely amazing. Even more amazing is that I never take him to

martial arts because he is too loud! It's been months since he's

seen that class.

You are right. Ian won't blow his nose if you hold the tissue up to

him and say 'blow'. However, you can hand him the tissue and he'll

blow, THEN wipe with the tissue. Good enough. Key is: let him do it

himself.

> Hey Pam!

>

> Hmmm -as I posted just the other day

> " Speaking of which -you want to be sure that what your daughter has

> truly is a language or receptive disorder and not just an

expressive

> disorder, or a combination of both receptive and expressive. Too

> many communication impaired children are assumed to have receptive

> disorders that do not. "

>

> Because it's only been two weeks, I believe it's 'possible' that

> there never was a receptive problem to begin with and that he was

> just exhibiting frustration of not being able to communicate by

> tuning others out. (withdrawing) He may still be tuning out in

> therapy for some reason. Do his therapists view him (treat him)

as

> if he has receptive delays? How fun are his therapy sessions? Is

> he 'ever' into his therapy sessions? When? Can you just for fun

> try another therapist (don't mention anything about receptive

> delays) and see if there are any differences?

>

> Let us know!

>

> Oh and PS about blowing the nose thing. The trick of apraxia is

> being able to motor plan 'on command' which means they won't have

> any trouble breathing in and out of their nose all day long -but

> when told to blow their nose on command when a tissue is placed to

> their nose -many breath in when trying to blow out! And the

harder

> they try to blow out -the harder they breath in sometimes!

>

> (without the tissue the way Ian does it now -not sure how that

> works!)

>

> =====

>