archived message-very long

[Guest guest]

I have noticed a lot of new members lately. I just wanted to share

this response from . This was my very first post in September

2005, and she gave me such hope for my son. I had a feeling it was

apraxia, but it wasn't clear until after she responded to my

message. Tons of great information in this post from .

Hope it can help someone else that is new to the apraxia world.

Tina

>

> Tanner was a " Mmm Mmm " (good) baby too! ) I can tell you as a

> parent of an apraxic child who just turned 9 that it goes from " mmm

> mmm " to sounds, words, sentences, and then conversations.

>

> When Tanner at 2 wanted to say " NO! " he would say " MMMM! " very loud

and stamp

> his foot. It was a clear " no " to all! And it was clear

to 'almost'

> all when Tanner first started " sentences " at 3 that - " tea tea tea

> tea me? " was obviously his way of asking " can I have a tiny bit? "

> And today? Tanner just talks and talks. Sometimes you have to ask

> him to be quiet! Imagine that! He's a great student with lots of

> friends, and a child with a heart of gold.

> Tanner's talking page (top photo was from 2003 not 2001)

> http://www.debtsmart.com/talk/tanner.html

>

> And he's not the only

> example of a success story.

>

> Right now my best advice is let you know you are doing all the

right

> things. You have a little one who has a delay in speech for some

> reason, and you are making yourself knowledgeable about apraxia as

a

> just in case.

>

> You'd also be shocked to learn that your now late talker child who

> is behind your oldest in some developmental stages may be ahead

down

> the road. Look out for the " incredible memory " if you haven't yet

> experienced it.

>

> At 2 -if you hide a toy from him for example after pulling out

> another one -does he transition but notice where you put the first

> one?

>

> If you tell him he can have a certain treat " tomorrow " ...does he

> wake up and go to where you keep them and point?

>

> My theory on this is that the receptive ability is very high, the

> expressive is low -and they have to retain and remember what they

> want to communicate until they get their needs across.

>

> Here's an as it says below -long archive on this:

>

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

> Date: Thu Apr 28, 2005 5:58 pm

> Subject: Re: Articulation disorder or apraxia? Long post.

>

> Hi ,

>

> My son Tanner was a " late talker " too. Both my boys were.

>

> Today due to Early Intervention therapies, EFAs, and multisensory

> therapies

> -both boys 8 and 10, are mainstreamed and blend in as " normal "

boys.

> Doing

> great at school -sports -with lots of friends etc.

>

> There are many in this group that followed nothing but what is

> below. Today

> there are more here that explore biomedical approaches like DAN.

> Would have if

> we needed to -but didn't need to.

>

> 5th grade Dakota's on the 99% -2nd grade Tanner's above grade level.

>

> We are proud of both of them -but especially Tanner since a NJ

> school who used

> verbal based testing on him " found "

> " he wouldn't make it in a mainstream kindergarten class "

> " he tests low average for ability "

>

> Tanner i/e doing a book report on Beverly Clearly's 'Socks' book

>

http://www.germantownacademy.org/academics/ls/superreader/title/S/sock

s.htm

>

> Knows with about 100% accuracy addition, subtraction,

multiplication

> and

> division tables (again he's only in second)

>

> Spelling words this week that Tanner knew by Tuesday

> plantation, weary, sturdy, fretted, settlement, celebrate,

> cornstalks, potatoes,

> alphabet, railroad, carpenters, tongue.

> (with new words each Monday -tested on putting each in an

> appropriate sentence

> -spell, capitalize, and punctuate accurately by Friday)

>

> Below are a few archived answers on this most

> popular question that make for a long long post!

>

>

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

> Date: Sat Apr 2, 2005 5:03 pm

> Subject: Re: Apraxia kiddietalk

>

> Dawn,

>

> Apraxia -what's that?

>

> I asked the same thing less then 6 years ago and 2003 wrote a book

> about it -go figure. I wish I didn't 'have' to know. We do what we

> can to help our children. I like you knew what a late talker was of

> course ...since 'both' of my boys were " late talkers "

> http://www.cherab.org/information/familiesrelate/workandfamily.html

> http://www.cherab.org/information/familiesrelate/letter.html

>

> Most people use the term " late talker " for a child that is a bit

> late to talk. Or they say " late bloomer " . Or " Just give him time

> and he'll talk just fine " . Or " Einstein didn't talk till he was

> ___ " fill in the blank Or " He's not talking because you are doing

> too much for him " Or...(you all know)

>

> " Late talker " is a term used frequently for two year olds, less

> often for a three year old who probably at that point is in some

> type of Early Intervention and may instead be " diagnosed " as having

> an " expressive language delay " , and even less often for a four year

> old or older because at four or older it's more likely the child is

> diagnosed with some reason for the delay...such as apraxia -which is

> one of many disorders of speech. Just because a child is diagnosed

> with a disorder doesn't mean that child will not have a verbal

> future, it just means that they will require therapy to help them

> get there (unlike those with simple delays in speech who will speak

> with or without therapy -but just later)

>

> 75% of late talkers statistically are just that -children that talk

> a bit later who have simple delays in speech. The strategies used

> for apraxic children will still help to relieve frustration and

> encourage speech if your child only has a simple delay.

> It's for those children, like my Tanner, in the other 25% that the

> Early Intervention is so important to be able to speak.

>

> Here you can listen to Bilker at 5 years 9 months old. Both

> 's mom and dad and the professionals working with him through

> the school thought was " just a late talker "

> http://www.debtsmart.com/talk/brandon.html

>

> I cried when I heard for the first time. That was when I

> knew that my son Tanner did have apraxia as he was diagnosed with

> (yes I was in denial)

>

> What happened to -being viewed as a 5 year old " late talker "

> is also why it's important to seek diagnosis 'outside of the school'

> by speech, and if needed occupational therapy and medical

> professionals that are knowledgeable. Years down the road -those

> school professionals who may have missed the boat probably won't

> even know you or your child to say " I'm so sorry "

>

> Below are some differences between late talker and apraxia I've

> written in the past that may help you understand a bit more about

> the difference between " late talker or apraxia "

>

>

> " My son Tanner was diagnosed with both severe oral as well as verbal

> apraxia, but each child is different, and some may not go through

> all the signs that Tanner had, with his severity, and/or some

> children may have other aspects.

>

>

> Here are the " late talker vs. apraxia " or delay vs. disorder signs

> that I saw/see in my four year old Tanner as he was/is " learning to

> talk. "

>

> 1. It took forever for Tanner to learn how to say ANYTHING other

> than the word " ma " or the sound " mmm, " which were his only " words "

> up until almost 3 years old. Even though the therapy he received was

> not appropriate for apraxia (we didn't know this at the time), it

> was some type of therapy, and it took months of this speech therapy,

> 1/2 hour sessions, two or three times a week (from 2 years, 4

> months, to 2 years, 8 months) for him to learn simple sounds

> like " t " or " ch " or " sh, " sounds most babies and toddlers say when

> they babble.

>

> During this time, even though Tanner was in speech therapy, we

> followed our pediatrician's advice that Tanner was a " late talker "

> and never knew Tanner was qualified for early intervention by the

> state (a federal program) so we paid out of pocket for all the

> therapy (insurance didn't cover it and even though we appealed, at

> that time, we didn't know how to fight the denials). Tanner did

> babble with some of these sounds, though rarely. Many apraxic

> children babble very little. The problem was that when Tanner wanted

> to use one of these sounds, on command, he didn't know how. Many

> parents of apraxic children have examples, like us, of their child

> starting to develop speech and then, for some reason, they losing

> the speech they had developed. Since there is still no large scale

> research on apraxia in children, nobody knows why this happens. In a

> small research project by Tom out of the Pittsburgh

> Hospital, the findings were that it required 81% more therapy for

> apraxic children to show results than children with severe

> phonological delays.

>

> 2. Tanner did not go through normal speech development as he aged.

> He would say a sound (before 3) or word (3 and up) and not say it

> again for months. Most children with delays of speech will learn

> sounds and words and build upon that, in a developmentally typical

> pattern.

>

> 3. Another frustrating aspect of verbal apraxia is that even when

> Tanner learned how to say a sound like " p " before a vowel, he could

> not say the same sound after a vowel, so he would either drop it, or

> change it to another sound. For example, if the therapist modeled

> (said) the sounds " pa, " Tanner could say " pa. " If the next word the

> therapist modeled for him was " up, " Tanner would say " uf. " This has

> to do with the difficulty of movement of the tongue and mouth

> positions. Professionals refer to this as " motor planning " (which is

> why apraxia is also called a motor planning disorder.)

>

> 4. Tanner understood us and knew what he wanted and developed his

> own " sign language " to try to communicate. They say this is very

> common with apraxic children. When Tanner has more to tell us than

> he is able to say yet with words, he now also uses sound effects

> with his unique sign/body language. He's actually pretty good at

> making himself understood. (Remember Harpo Marx?) Many children with

> apraxia have high receptive (understanding) ability, and low

> expressive (talking) ability. There was never a doubt to anyone that

> Tanner was intelligent and apraxia does not affect a child's

> cognitive (intelligence) ability. (To discern your child's cognitive

> ability, view what his/her evaluations state about expressive and

> receptive ability.)

>

> Appropriate diagnosis is important to secure appropriate

> interventions.

>

> It is horrible that apraxic children are sometimes misdiagnosed as

> mentally retarded or autistic. Apraxia can co-exist with

> conditions like autism, cerebral palsy, downs, etc., but apraxia is

> often times there " alone. " (I'll explain later on.) Too often,

> children are diagnosed as having " receptive " delays, when they do

> not have receptive delays. Receptive delays are a " red flag " that

> there could be cognitive issues going on. It's one thing if there

> really are cognitive issues, but seek second opinions privately from

> a speech and language pathologist, developmental pediatrician and/or

> neurologist knowledgeable about apraxia and other disorders.

>

>

> 5. Even when Tanner learned to say the sound " t, " if he tried to say

> the word " pot " it would come out " pop, " because he will switch

> the " t " to a " p. " The professionals say this is due to motor

> planning difficulties and children with apraxia will carry the sound

> from the beginning of the word to the end.

>

> 6. Tanner's intelligibility will " break down " the longer the word or

> sentence is. Even with a model, he can't repeat back a longer

> sentence using all the words yet, he will repeat back only a few of

> the words.

>

> 7. Tanner never " picked up " speech like other children. He also

> seemed to regress and didn't talk at all when he was around large

> groups of children that were talking and playing, even when they

> tried to play with him. He tended to do better with one other child,

> or his brother and maybe one more. Then he would try to talk too.

> Tanner's older brother was also a late talker, but that was because

> of birth injuries that he was in therapy for from birth. (He's doing

> great now! He's 6 and unless I tell someone, they never would have

> known.) Where Tanner wilted in

> groups of children, Dakota thrived, and Dakota did " pick up " speech

> when I put him in a wonderful preschool a few times a week.

>

> 8. When Tanner started to use words, he would repeat the same sound

> over, using sentence inflections, rather than saying the different

> words. A good example is, he would point to the door, or out the

> window, while saying, " die, die, die, die, die. " Of course that

> meant, " I want to go outside. " I heard some apraxic children are

> monotone, but that wasn't Tanner.

>

> We would have to say to Tanner, " I...want...to...go...outside, "

> really emphasizing and waiting after each word, so he could repeat

> it. Tanner can now say many words clearly, but he still does better

> when he hears someone say them first. Now at 4, Tanner will, " I doe

> side now peas. Tay? "

>

> 9. Tanner's apraxia still affects his ability to use the back of his

> tongue to say sounds like " k " or " g. " He substitutes the " k " for

> the " t, " so cookie is " tootie. " And the " g " for the " d, " so girl

> is " dirl. " He has yet to make either the " k " or the " g " sound, but

> we are working on it. When Tanner said, " hud n' tiss, " the other

> night, I had to stop and switch the " d " and " t " to know he was

> asking for a hug and a kiss.

>

> 10. Tanner talks better when he is singing, or playing, when he

> isn't thinking about it.

>

> 11. I could go on, but another one Tanner has developed now that he

> is really pushing himself is stuttering (dysfluency.) This does not

> always happen with apraxic children, it's partly developmental, but

> it's not uncommon with apraxia. Many children with apraxia can

> get " stuck " here for a bit. I say how cruel, he has trouble talking,

> and to add stuttering to that is like adding insult to injury. Many

> experts say his brain is working faster than his mouth. You can

> visibly see him struggle to talk when he does. Lots of thought goes

> into each word; you don't see that with late talkers. I never did.

>

> Some " soft " neurological signs that are common in apraxic

> children:

>

> I thought Tanner only had apraxia, with no other issues, but I was

> wrong. These other " issues " however are typically overlooked by us

> as parents, and by many pediatricians. Tanner had

> other " neurologically based " signs, hypotonia and sensory

> integration disorder. I know that sounds severe, and perhaps they

> could be, but fortunately because Tanner had early intervention, he

> is overcoming them, and they are now only noticeable to experts.

> Both of these are treated by Occupational Therapists, but can be

> addressed by Physical Therapists and Speech Professionals as well.

>

> Hypotonia, or low tone, gave Tanner the appearance of a Cherub, and

> that was his nickname when he was 2, " Cherub Boy. " Everyone said

> that Tanner looked like a Cherub because he was so cute. Hypotonia,

> however, needs to be addressed, because it affected Tanner's truncal

> strength and breath control, which is important for many reasons,

> including speech.

>

> Tanner also had mild sensory integration (SI) issues. There is lots

> of information online about SI, but mostly it makes the child seem

> like the tantrum child, for " no " reason. Children with hSI do not

> sense things like we do, the same way all the time. One example from

> when Tanner was a baby (and this is before I knew what SI was, or

> that Tanner had it) is that he would sometimes " freak out " when I

> tried to bring him into a store. He would scream like he was in

> intense pain, like there was a pin in him, tighten his whole body

> and act hysterical. Other shoppers would look at me like, " What are

> you doing to that child! " My sister, who is a certified nanny, was

> often with me when this happened, and we would check his diaper,

> offer a bottle, take all his clothes off, looking for what was

> causing the screaming, but we never found anything. This same child

> would go for shots and wouldn't cry. I used to call him the " tough

> one. " More recently, I was tickling his arm and he said, " Ow! Hurt

> me. " I asked him, " Does this hurt? " and tickled him again. He pulled

> his arm away and said, " Yes. " Sometimes if I pat his head he

> says " Ow, " too. SI is another unknown one, and it can affect

> different senses. For Tanner, it's touch.

>

> http://www.speechville.com/diagnosis-destinations/apraxia/verbal-

apraxia.html

>

>

>

> More late talker vs apraxia from Speechville

>

> http://www.speechville.com/diagnosis-

destinations/latetalker/questionsanswers.html

>

> 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.

>

> =====

>