Re: curious comment by slp

January 29, 2009

Well, first, it would bother me more that she was divulging

information (even without a name attached) about another child and I

would wonder if she was doing the same in regards to my child when he

was not there. You never know when you might meet up with a 3 year-

old in the waiting room, who just happens to be this kid. You know

what I mean?

And my opinion on the " apraxia " for the 3 year-old in question, it

does NOT sound like Apraxia to me, but then again I do not know all

the circumstances. I have a two-year-old that is not talking in two-

word sentences yet.

There is a wide-range of speech/language acquisition and there is a

big difference between " speech " and " language " . In addition, boys

often speak later than girls. I know this for a fact and with first

hand experience. Unless the 3 year-old starts speaking and then

mysteriously becomes unintelligible and starts losing words, then I

would venture to say that by definition, he does not have Apraxia at

all. From what I know, true verbal apraxia is said to be rare. (But I

do not know how accurate that statement really is, as they say MDS is

very rare,but according to the numbers I see daily, that simply is

not true.)

>

> Hello eveyone. I'm looking for your insight into a comment from our

> SLP. She uses Kaufman with my son and I think she does a fine job.

> She happened to mention a client of hers who is going to turn three

> this week. She said that he had all the classic signs of apraxia

from

> the start, but that about a month ago he began saying a few simple

> one and two syllable words and putting together a few two word

> phrases. She then said, " That's why we don't like to diagnose

apraxia

> before age three. " I didn't pursue it because she said it as she

was

> packing up to leave and I didn't want to make her late to her next

> appointment; however, it bothered me.

>

> Just because a child starts putting together a few simple words and

> phrases on the verge of his or her 3rd birthday, does that mean

that

> the child does not have apraxia? This child is still clearly way

> behind his peers in expressive language if at three he can only say

a

> few words and put together a few two-word sentences, right? I just

> can't understand how the possibility of apraxia magically

disappears

> if any speech at all is gained by age 3.

>

> Is my view of apraxia incorrect?

>

> As you can see, this is not a pressing question :-) It just

bothered

> me so I thought I'd put it out there. I would especially love to

hear

> from any SLPs on the board.

>

> thanks!

>

> -les

>

January 29, 2009

Hi Les,

I agree with you, this SLP's comment doesn't sound right about

apraxia. I assume she's a new grad??

Something else that really irks me personally is the idea that kids

shouldn't be diagnosed before 3. You hear this over and over, and

while I think it's good not to give a hard 'label' or 'diagnose' too

early because it could be wrong. But in our case, getting a " working

diagnosis " at 22 months set us in the right direction and my dtr. was

age appropriate in all areas by age 3!! With MANY THANKS to for

her Awesome book and this group for all their wealth of knowledge,

the fish oil protocol, the labs to run from Dr. Agin and Dr. ,

etc.

A preliminary or 'working diagnosis' means the SLP and parents are

still ruling out other diagnosis' and keeping an open mind. And this

takes a highly skilled SLP. I don't think most are qualified to make

this determination early on, and this is why they say wait until 3.

I have the highest regard for the SLP who gave us a preliminary

diagnosis of my dtrs. severe expressive delay " based on the sounds

she was making and not making. " She worked at Lucille Packard

Children's Hospital at Stanford for 12 years (a diagnostic medical

setting) and is now in private practice. The SLP's I've met through

Early Start, the SD and even other private practices, just haven't

been qualified or experienced enough to make these determinations

early on. Our SLP felt my dtr. had apraxia after only 20 minutes of

meeting her (although she said 'don't hold me to it'), so it can be

done. And of course, she was cautious and needed time to confirm her

suspicions. No sense going down the wrong road, but I get tired of

the mantra when we all know how important early intervention is. And

from 2-3 my dtr. caught up and is now in mainstream everything :-)!!!

(Our wonderful SLP was recommended on a local online Mom's group.)

I also know it's Not a good idea to send the wrong child to ABA

therapy, so this can be a slippery slope but for us it worked out and

I'm so appreciative. Thanks for letting me vent a little about

this...controversial, I know.

Best,

Debra

Mother to , 3 1/2 yo

>

> Hello eveyone. I'm looking for your insight into a comment from our

> SLP. She uses Kaufman with my son and I think she does a fine job.

> She happened to mention a client of hers who is going to turn three

> this week. She said that he had all the classic signs of apraxia

from

> the start, but that about a month ago he began saying a few simple

> one and two syllable words and putting together a few two word

> phrases. She then said, " That's why we don't like to diagnose

apraxia

> before age three. " I didn't pursue it because she said it as she

was

> packing up to leave and I didn't want to make her late to her next

> appointment; however, it bothered me.

>

> Just because a child starts putting together a few simple words and

> phrases on the verge of his or her 3rd birthday, does that mean

that

> the child does not have apraxia? This child is still clearly way

> behind his peers in expressive language if at three he can only say

a

> few words and put together a few two-word sentences, right? I just

> can't understand how the possibility of apraxia magically

disappears

> if any speech at all is gained by age 3.

>

> Is my view of apraxia incorrect?

>

> As you can see, this is not a pressing question :-) It just

bothered

> me so I thought I'd put it out there. I would especially love to

hear

> from any SLPs on the board.

>

> thanks!

>

> -les

>

January 29, 2009

Typically if apraxia is diagnosed prior to 3 years old it's diagnosed

as " suspected apraxia " and the reason for the diagnosis is to secure

appropriate therapies as soon as possible. (as the importance of

" Early Intervention " isn't just called that -it's called early

intervention for a birth to three reason...and she's saying let's not?!!)

Two can play her game -there are parents in this group who's SLPs

didn't diagnose apraxia and now these parents are dealing with more

severe apraxia issues with school age children that could have been

dealt with in preschool years and one can say " that's why we like to

at least get a suspected apraxia diagnosis as soon as possible -for

Early Intervention reasons "

In addition this sounds like the type of SLP that is just going by

that child's verbal output. Apraxia is not just a speech disorder.

Does this child have any fine or gross motor skill issues? Low tone?

Sensory issues? I don't really see this SLP's point. Does she

believe a child " diagnosed " by an SLP as apraxic should get a

neurodevelopmental exam? Does she acknowledge soft signs? Does she

recognize how severe apraxia is and the importance of those birth to

three years if apraxic?

As we know from this group children on the right formula of fish oils

do tend to surge and talk much quicker than historically children that

are apraxic not on fish oils would speak. However these children may

'appear' to be normal -but apraxia doesn't just resolve and anyone who

thinks it has either had a misdiagnosed child...or their child isn't

old enough yet for them to see the next stages. Trust me I talk to

parents of older apraxics as well as the adult apraxics themselves.

You overcome it- it's not as of yet curable.

Also while I've been told a few times now that it's hard to diagnosed

verbal apraxia definitively under 3 years old -oral apraxia can be

diagnosed much younger.

wonder what this SLP would have to say about this type of " early

intervention " as well;

" The brain has a unique opportunity to properly grow and develop and

this is during the perinatal and early postnatal periods. Ideally, if

we want to correct a DHA deficiency we should provide the DHA during

those periods or, at least, as early in life as possible. If we

provide the DHA too late, we may correct its deficiency but the past

consequences of it may already be irrevocable. "

http://www.momtahan.com/mmartinez/

And what was the big deal? Say the SLP was correct and this 3 YO

child was misdiagnosed and really is not apraxic...he's talking in

what...6 months? How much therapy was " wasted " on him? All 6 months

or so or just the past month?

Oh and million dollar question...who diagnosed the child as apraxic?

PS to Debra -speech therapy, unlike ABA, is benign -if not needed it's just a

waste of time and money...but some say even if not needed it may stimulate a

child with a simple delay to start speaking a bit earlier.

=====

January 29, 2009

said: " Two can play her game -there are parents in this group who's

SLPs

didn't diagnose apraxia and now these parents are dealing with more

severe apraxia issues with school age children that could have been

dealt with in preschool years and one can say " that's why we like to

at least get a suspected apraxia diagnosis as soon as possible -for

Early Intervention reasons "

I think we fall into that category except thanks to a Sept bday which

allowed him to be an " old " 1st grader this year, and great progress in the

past year my son is having much less issues in school than he might have had

otherwise.

My son did not get an apraxia diagnosis until he was 3.11 years. At 2.5

years he was mis-diagnosed with " moderate autism " and received intensive and

useless (and some harmful) therapies. He made NO progress. In just a few

weeks of appropriate therapies his vocabulary quadrupled (not hard since it

was so small to start) and he gained several speech sounds he had not had

before. He even started combining two words which commonly come together.

He was given the tool of a carrier phrase " I want... " and started being able

to fill in the blank with approximations. I do believe that had he been

given this appropriate therapy 18 months earlier he would have made more

progress more quickly. Maybe he would have been combining two words at age

3!

What the SLP said would have bugged me too.

On the other hand my daughter had many of the classic signs of apraxia (not

soft signs, but my son doesn't have those either, but verbal apraxia signs -

lack of babbling, only vowels, no true words, minimal verbal attempts.) At

15 months she tested at a 5 mo level in speech production and expressive

language and almost age appropriate in receptive language. Because of her

brother having apraxia she was watched carefully for signs and EI assigned

us an SLP who was familiar with motor planning issues. By 18 months she was

" talking " more and clearly had great language skills, but still severe artic

stuff going on. The more she talks the more we have been able to see that

her errors are consistent and I don't fear apraxia any longer (in fact I'm

more convinced it isn't an issue than her SLP!) She's almost 2 and a half

now and her language is far advanced, but her phonology is still poor. She

has a little oral motor planning stuff going on, but it doesn't interfere

with eating or life really. She's speaking well enought that she may not

qualify past age 3. If she has a " good " day and speaks her usual 8+ word

sentences she will qualify because those are completely unintelligible (she

consistently drops all ending sounds and also beginning sounds in connected

speech) but if she is shy and speaks in single words they will wonder why

we're even having her evaluated! LOL! She's clear in single words. We

don't think it's apraxia because her connected speech errors are

consistent. Apraxia isn't about being able to connect words it's the

inconsistent errors in speech. Lot of apraxic kids, especially ones who

have improved, will only appear apraxic in connected speech or when saying a

multisyllable unfamiliar and/or unrehearsed word.

Miche

January 30, 2009

Yep. I am one of those parents. My child just got diagnosed at 5-

years-old with Apraxia (it took 3 and a half years to get a levi the

chromosome diagnosis). Due to an incorrect label from birth of

Trisomy 21 Down Syndrome, doctors and speech therapists alike kept

saying it was " developmental delay " . When my son got rediagnosed with

an inherited form of Mosaic Down Syndome (very rare), I started

researching more and found out that developmental delay was when the

child spoke, but in a progressive sequence, just slower. (which makes

it a delay, in essence). It acually took " ME " gathering all the

information I could find on " development delay " and " apraxia " and

then taking it first to the pediatrician, then the speech therapist

in order to confirm the diagnosis. By that time, we had to find a

different speech therapist because we had lost our other one due to

Medicaid changes and we had been without proper speech therapy in the

school system (so, basically he has been without any speech therapy).

When we found a speech therapist, and I had his prescription and

diagnosis in hand, which now has to be written on the script before

giving to the speech therapist-a diagnosis before the evaluation,

which sounds dumb,along with the words " 6 months or PRN " also on the

script in order for insurance to cover it) . Within a few minues, it

was quite obvious to the ST and the OT (as it had been to me since I

discovered there was such a thing as Apraxia, but I had known for a

long time that he had no developmental delays) that my son had full

blown verbal apraxia. It is quite obvious by his " groping " for words

and the fact that he has said some words, only to lose them and never

say them again. What is so sad is that if the public school speech

therapist had done her job correctly, then he would have at least

been diagnosed a year and a half earlier. Since BCW was of little

help due to funding cuts then as well and their therapists not

getting paid properly, he was not diagnosed before age 3. He did have

an evaluation at BCW and they were too untrained with apraxic

conditions to notice, document, or test for Apraxia. Very few

therapists are trained to recognize Apraxia,and I hear almost none in

the public schools are very trained in treating Apraxia or

recognizing it, as it has been considered rare (until now).

I really cannot blame BCW though because if he would not have had the

incorrect label from birth, then everyone would have not mistakenly

thought it was a typical developmental delay commonly associated with

individuals who have Trisomy 21 Down Syndrome. As it turns out,

everyone was too busy looking at what " delays " he did not have (but

should have had with the incorrect chromosome diagnosis)that they

were too busy to see the ones he does have as a result of Apraxia,

like head tilting (SI issue) and weak grips (even though his pulls

are awesome). I boldly blame Kennestone Hospital and their

malpractice for my son not being able to get a correct diagnosis

until now. But now, I have to move past that and get proper treatment

for my son. We still (7 months later!!!!!) are in due process to get

my son services at home from the local school. (He has to be

homeschooled due to chronic pulmonary infiltrates and he can not be

in a school environment due to potential to get respiratory

infections.)Even though we have provided the proper documentation

with a very clear letter from his pulmonolgist and obtained a lawyer

through the advocacy office, we still are not getting any services

from th local s County School. He gets one day a week at a

distant, out-of-county private therapy office and that is it. Because

we have only been a handful of times, we have not been given a home

program yet (even though we have been there since October); though,

she has promised one. " I " have had to " learn " all that I could about

his needed ST and OT in order to provide it myself. It is " that "

or " nothing " . Thank God he won a $2500.00 scholarship from Kiddos'

Clubhouse Foundation. With that, therapy equipment and supplies for

me to give him the therapy he needs " myself " are dribbling in through

the mail. We just finished deciding what all we thought we needed in

order to acheive maximum results and Kiddos' has been very helpful in

trying to help us otherwise as well.

There are no PROMPT therapists in the area and I am a bit leary of

the physical touching from others anyway (since the Kennestone

incident) so I have ordered similar materials thru the scholarship

funding and done my research on helping him to form proper mouth

movements to create the sequence of sounds (these things are not

something that a typical parent can or should have to do). I feel

better letting him make the proper oral movement if he can within a

number of tries. Our journey has been very intense and very agonizing

for all of us. Now that we have a correct diagnosis AND help from

Kiddos' :0), we will hopefully be able to fix his Apraxia to where he

can at least be a socially acceptable talking member of society. The

Apraxia will always be there, but we can build new pathways in his

brain and he can function acceptably in the near future. I am sure he

will always have some difficulty due to the lack of oxygen after

birth, but we are hoping for a minimal disability in the future.

(I know I am long winded....but very passionate about issues

regarding my son, as we all are, I am sure.)

January 30, 2009

Apraxia is a motor programming issue in the brain and if it affects

the " speech " ,then the child will have a problem (at least)

with " sequecing " sounds to " form words " . In the beginning, before

therapy, a apraxic child's speech will be clearly unintelligible. If

a 3 year-old has intelligible speech, then I can most assuredly say

that Apraxiais the incorrect diagnosis. But I am not a speech

therapit and only a nurse and a mom who has done loads of research on

this condition and obtained information from worldwide sources.

If speech is " not " affected,but other conditions affecting motor

programming skills are, then my understanding is that it is

considered just plain dyspraxia.

January 30, 2009

Hi ,

We go to Kiddos as well and LOVE it!!!!

sl

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From: <agirlnamedsuess@...>

Subject: [ ] Re: curious comment by slp

Date: Friday, January 30, 2009, 11:11 AM