Re: Cool Gizmo's or Mouth Exercisers???????

April 22, 2008

pls ask your SLP for better idea. but I know some

websites you can buy the oral motor exercise toys for

toddlers. hope can help.

theraproducts.com

specialkidszone.com

abilitations.com

or search for super duper on google.

--- Carla <carlarobbins@...> wrote:

> Can anyone share any neat " tools " or toys, etc..

> that worked

> particularly well with their child? Any great

> videos? Also, any mouth

> and tongue exercises?

>

> My son turned 3 at the end of January and despite 3

> days a week of

> private speech therapy (one hour each) and a Verbal

> Behavior ABA

> program, he still is nonverbal. We are getting

> desperate, absolutley

> desperate to hear our son speak. We will not accept

> defeat. He's

> doing the Listening Program right now and he's on a

> restriced GFCF,

> yeast free diet and takes MANY supplements. We've

> also done 2 rounds

> of chelation (DMSA suppositories). He goes to a

> wonderful private

> preschool 2 days a week which he loves and a PPCD

> (ISD program) 3 days

> a week which is worthless!

>

> I'll take ANY suggestions and they are so

> appreciated.

> Carla

>

________________________________________________________________________________\

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April 23, 2008

Hi Carla!

What is your child's diagnosis? (I probably should have checked the

archives to see if you said on a last message?)

If your child isn't autistic I'd drop the ABA and increase the speech

therapy. Even if your child is autistic be very careful with this

type of therapy in regards to apraxia which is a motor planning

disorder and requires motor planning therapy. ABA is the only

therapy I know of that is not only inappropriate for apraxia -but has

been known to be detrimental. Also you don't mention occupational

therapy but that's typically very important for most any late talker

as there is a link between motion and speech.

You'd be better off with 6 days of 1/2 hour sessions of speech

therapy if your child has apraxia as the more often the therapy the

better (I have some references on this below) Are there any co

existing " soft signs " such as hypotonia, sensory issues etc.? Does

your son have food allergies/celiac disease? What supplements? It

concerns me that you say " MANY " as sometimes less is more. Besides

we know from history from this group over the years that those who

just gave their child fish oil -even just one capsule of ProEFA had

for more surges than those that went the testing/become a chemist in

your kitchen route. Many of us never had to put our children on

special diets (unless they tested positive for allergies or celiac)

and most don't give supplements outside of fish oils and vitamin E.

(even though right now I just started Tanner on Taurine based on some

of the offlist conversations I've been having with some of the MDs

here)

One of my favorite toys back when for my apraxic son Tanner was that

oversized plastic microphone they call the Echo Mike (speaking of

Ebay they have them 3 for 6 bucks there) But no need -they still

sell them at Target/Toys R Us and VERY cheap. You don't always have

to spend a zillion to get things that work.

Back to your question -I have some archives about oral motor tricks

below information of the importance of intensive one on one therapy

for apraxia. (if that's what your son has)

I have much more in the way of oral motor therapies. I know a few of

the suggestions for oral motor activities are in The Late Talker book

but will see which ones were cut out as I have a ton more to share.

One on One Therapy

A Review of Apraxia Remediation

The Cherab Foundation gratefully acknowledges permission to print the

following, cited by Hecker, a parent advocate for her

apraxic son, .

" The type of treatment appeared to influence whether patients

improved. More patients improved and improvement was greater in Group

A, individual stimulus-response treatment, than in Group B, group

treatment. These result imply the way to treat AOS (Apraxia Of

Speech) is to treat is aggressively by direct manipulation and not by

general group discussion. This is consistent with what has been

recommended (Rosenbek, 1978).

The type of treatment appeared to influence whether improvement

occurred or not. Four of the five patients who did not improve

received group treatment with no direct manipulation of their motor

speech deficit. " Apraxia of Speech: Physiology, Acoustics,

Linguistics, Management. Rosenbek et al. 1984

" The frequency of professional speech assistance is critical in the

habilitation of children with developmental apraxia of speech. This

disability call for all-out attention and deserve serious instruction

to the limits of the child's attention and motivation. When normal

children begin their formal education, they do not go to school two

or three times a week for just a half-hour at a time, even in

kindergarten. Thus, I do no expect to provide special education for

children with developmental apraxia of speech on a cursory basis, for

it may be the most important part of the entire education. " Current

Therapy of Communication Disorders, Dysarthria and Apraxia.

H. Perkins 1984

" They use the term developmental apraxia to describe a disorder that

is not confined to the phonologic and motoric aspects of speech

production, but includes difficulty in selection and sequencing of

syntactic and lexical units during utterance productions. Most

clinicians agree that planning the appropriate treatment approach and

methods is crucial to the efficacy of intervention. A variety of

factors can facilitate treatment of DAS. DAS is often characterized

as being resistant to traditional methods of treatment. Group

therapy decreases the potential of responses per session for each

child and therefore, the motor practice needed by children with

apraxia and dysarthria. " Treatment of Motor Speech Disorders in

Children by Edythe Strand in " Seminars of Speech and Language " Vol.

16, No. 2. May 1995

" Early stages of treatment need to be carried out on a one-to-one

basis for it is only in this way that the patient can learn to

develop his own particular strengths and adopt compensatory measures

for weaknesses. " Disorders of Articulation, Aspects of Dysarthria and

Verbal Apraxia. Margaret 1984 " These children do not seem to

make good progress with the usual approaches to clinical treatment of

articulation problems. Carefully structures programs that combine

muscle movement, speech sound production, and sometimes even work on

grammar seem to get better results. " " Developmental Verbal Dyspraxia "

on Healthtouch Online, ASHA website

" Children must be seen one-on-one, at least in the early stages of

treatment. " Kaufman, author of the Kaufman Speech Praxis Test

and expert on Apraxia, on The Kaufman Children's Center for Speech

and Language Disorders website .

" However, many of the theories, principles, and hierarchies described

for adult apraxics are potentially helpful to the clinician designing

motor-programming remedial program for an individual child. (We

stress the word individual since the program development for children

with DAS must meet the individual, and often unique, needs of each

child.) " " Intensive services are needed for the child with DAS.

Children with DAS are reported to make slow progress in the

remediation of their speech problems. They seem to require a great

deal of professional service, typically done on an individual basis.

Therefore, clinicians working with DAS must accommodate this need and

schedule as much intervention time with the child as the child and/or

his/her schedule can allow. The definition " intensive " varies from

clinician to clinician and from work setting to work setting.

Rosenbek (1985), when discussing therapy with adult apraxics, defines

the word as meaning that the patient and the clinician should have

daily sessions: Macaluso Haynes (1978), Haynes (1985), and Blakeley

(1983) also advocate daily remediation sessions. " Also, " our

experience has been that the overall outcome has been best for those

children with DAS who were identified as possibly exhibiting DAS and

received services as very young children. " Developmental Apraxia of

Speech, Theory and Clinical Practice. Penelope Hall et al. 1994

" We recommend therapy as intensively and as often as possible. Five

short sessions (e.g., 30 minutes) a week is better than two 90 minute

sessions. Regression will occur if the therapy is discontinued for a

long-time (e.g. over the summer). Most of the therapy (2-3/week) must

be provided individually. If group therapy is provided, it will not

help unless the other children in the group have the same diagnoses

and are at the same level phonologically. " Velleman,

authority and published author on Apraxia, on her website

(velleman.html). " Our clinic has had tremendous success with the half-

hour format, we find these session to be very intense, packed with

therapy, and have little

down time. The earlier and more intensive the intervention, the more

successful the therapy. Group therapy can be effective for

articulation disorders and some phonological processing disorder, but

children with Apraxia really need intensive individual therapy. "

Lucker-Lazerson, MA, CCC-SLP, and Clinic Coordinator for the

ish Rite Clinic for Childhood Language Disorders San Diego, on

the Apraxia Kids website.

" A few major principles in particular have direct relevance to the

treatment of motor speech disorders. The most obvious, yet

surprisingly often disregarded, is that of repetitive practice.

Pairing of auditory and visual stimuli is included in most

approaches, and intensive, frequent, and systematic practice toward

habituation of a particular movement pattern is suggested instead of

teaching isolated phonemes. It is important to

consider the treatment needs of each child and attempt to find

creative solutions that

> allow frequent individual treatment for children that will most

benefit. "

Childhood Motor Speech Disorders Edythe Strand

" Given the controlled conditions stipulated in the studies..., it is

clear that speech dyspraxia can respond to therapy. All approaches

involved an intensive pattern of therapy. Even if not seen daily by a

therapist, patients carried out daily practice. " Acquired Speech

Dyspraxia, Disorders of Communication: The Science of Intervention.

Margaret M. Leahy 1989

" Consistent and frequent therapy sessions are recommended. The

intensity and duration of each session will depend on the child. At

least three sessions per week are recommended for the child to make

consistent progress. " Easy Does it for Apraxia-Preschool, Materials

Book. Robin Strode and Chamberlain

" In stark contrast, the children with apraxia of speech whose parent

stated that three quarters of their child's speech could be

understood following treatment, required 151 individual sessions

(ranging from 144-168). In other words, the children with apraxia of

speech required 81% more individual treatment sessions than the

children with severe phonological disorders in order to achieve a

similar function outcome. " Functional treatment outcomes for young

children with motor-speech disorders by in Clinical

Management of Motor Speech Disorders A.J. Caruso and E.A. Strand

1999.

(In addition to the information on this page, a great page on 1:1

therapy is at Apraxia-Kids)

1:1 Therapy Question Sent To Children's Apraxia Network:

Advice From our nonprofit's SLS/MA/ EDUCATIONAL CONSULTANT, Cheryl

-

It is interesting to note that when a child is receiving Early

Intervention services in the home, therapy is 1:1. It is also

interesting to note that children as young as 6 months of age have

received 1:1 services. Every apraxic child is different, with a

diagnosis of severe apraxia, the child would benefit from 1:1

therapy. What data is the school SLP (Speech Language Pathologist)

presenting indicating that the age of 5 is too young for 1:1

services?

Remember when a request for services is not given as requested, the

denying party must give a written rationale as to why. The IEP

(Individualized Education Program) is an individualized Education

Program. How will the SLP (Speech & Language Pathologist) address the

severe oral motor needs of the child within the group setting? What

are the short and long term goals and objectives that are specific to

the nature of this child's severe apraxia? Does the SLP plan to

devote x amount of minutes providing 1:1 therapy to your child within

the group setting? Your child's disability of apraxia affects his

involvement and progress in the general curriculum and access to

nonacademic and extra curricular activities due to the fact that he

is not able to communicate appropriately to school personnel when

needed and communicate effectively through speech and/or writing to

class- mates and teachers. The severity of his disability warrants

1:1 speech therapy intervention. Your child's disability of apraxia

of speech affects his ability to engage in age relevant behaviors

that typical students of the same age would be expected to be

performing or would have achieved {IDEA-Code of Federal Regulations

(C.F.R.): 34 C.F R.300.347 (a)(1)(i) Statue 20 United State Code

(U.S.C.) 1414 (d)(1)(A)(i)(1).

I am requesting that the parent draft a letter to the Dr. of the

Child Study Team including the information listed above. Indicate

that you are not in agreement with the type /amount/duration of the

speech therapy services that will be provided to your child. State

that you are seeking 1:1 therapy services for your child because...

Send the letter certified receipt return requested. Send a copy to

the SLP, the District Superintendent of Schools, and Board of

Education President. Severe Apraxia requires the parent to advocate

for 1:1 services in the area of speech therapy.

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

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

Date: Tue Feb 10, 2004 6:05 pm

Subject: Re: Inability to Blow and Imitate / from Sara CCC

SLP

, The reason for the confusion as to who is best suited to work

on these oral-motor activities (i.e., " lick lips, stick his tongue

out, blow, suck through a straw, etc. " ) is really based on the fact

that both professions are interested in developing these skills.

The skills of blowing and sucking impact on feeding and speech

development. The same muscles that are used in feeding are used in

speech. Both professions therefore feel it is in their job

description to work on the activities. Both are right. In our

clinics we share the goals but use different techniques. The O.T.'s

are generally interested in gaining function for independence while

we SLP's want not only function we want normal movement. Speech is

superimposed on normal movement so when we talk about straw drinking

we talk about it in a hierarchy of muscle development as in the

TalkTools Straw Hierarchy. When we talk about blowing we create our

programs to develop adequate airflow for extended speech

statements. You need more air for a 5 word phrase than you do for a

2 word utterance. Therefore, instead of just picking up any horn or

blowing cotton balls we again work in a hierarchy of abdominal

grading activities (Horn Blowing Hierarchy or Bubble Blowing

Hierarchy.) I am just thrilled that both professions are claiming

the goals as their own. It was not so long ago that SLP's did not

see the benefit of working on non-speech movements for the

development of speech clarity. Sara Rosenfeld-

http://www.oromotorsp.com

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

> Hi and all,

>

> Wow this is a popular topic today -and one that was almost never

> talked about when my son Tanner was diagnosed just 4 years ago!

But

> I do see there is still much confusion about oral motor disorders.

>

> I sent an email to another advisor of CHERAB and Speechville about

> this, Sara Rosenthal CCC SLP

>

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

> Sara is the creator of Talk Tools, which you recommended, among

> many other techniques to help our kids.

>

> , even though in a few cases this would be possible, I

> wouldn't assume that a child that doesn't blow bubbles or imitate

> doesn't " get it " . There could be numerous reasons for this. In

> your child's case for example it sounds like there may be motor

> planning issues of the body. At 5 your son may have more in his

motor memory

> now and thus is able to do more. Or perhaps he didn't understand

prior -I

> wouldn't know. Most kids with appropriate therapy don't take this

long.

>

> But back to the not being able to imitate funny faces or blow

> bubbles or lick food off their lips...on command (key word) -

those

> are all signs of oral apraxia, but they could be from a weakness

> problem too or instead. My parent friendly rule of thumb is if

you

> see a child do it when not thinking about it, it's probably

> apraxia. If you never see your child do it ever -it's probably

> weakness. And again -it can be a combination of the two. It's

not

> that confusing when you have a few years to study it up close and

> work through it with therapy (not as a therapist -as a mom!)

>

> On top of motor planning and weakness issues (and receptive

ability

> in those cases) you can also throw eating and feeding as well as

> sensory problems into the mix too. And yes a child can have one

> aspect and no other -but typically or almost always as far as

anyone

> knows -a child that has oral apraxia will have verbal apraxia -but

> an adult who acquires oral apraxia can have that without verbal

> apraxia.

>

> Most late talkers (again) have average to above average ability,

> it's just that we don't understand them -and that's the only way

for

> them to express their ability to understand sometimes -us. They

> need us more than the professionals who today can still be

ignorant,

> to try to find ways to help them make themselves understood. A

way

> to communicate.

>

> Just like anything -children with impairments of communication do

> not just outgrow these issues on their own, they need appropriate

> interventions. is a perfect example of a child that grew up

> and now can talk and write...but a child who obviously was

deprived

> of what was appropriate therapy for him. I'm sure from speaking

to

> that everyone believed they did " all they could " to help him

> back then. You only know what you know. Thank goodness he's

getting the help he needs today.

> http://www.cherab.org/news/.html

>

> I'll post Sara's response as soon as she sends it, but in the

> meantime -speaking of only knowing what you know, again -this

topic

> if fully talked about from a professional and parent point of view

> in The Late Talker. (libraries/bookstores carry it -or you can

ask for them to

> order it for you) http://www.speech-express.com/late.talker.html

>

> There is a page on oral motor issues here which Sara helped to

write

> which have warning clues of various oral motor disorders.

> " Oral Apraxia is a disorder where the child, who typically is

> a " late talker " is unable to coordinate and/or initiate movement

of

> their jaw, lips and tongue (articulators) on command.

> An Oral Motor Disorder, which could be a different oral motor

> problem than apraxia (could be from weakness/dysarthria for

example)

> is the second type, in which the child is unable to coordinate

> and/or initiate movement of normal eating movements (vegetative

> activities.) "

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

>

> This is Sara's homepage

> http://www.oromotorsp.com

>

> =====

>

April 23, 2008

Hi!

Jack has a PDD-NOS diagnosis. Does not have an apraxia diagnosis

yet. No real speech diagnosis other than " delay " . I have asked our

ST for advice on stuff to do at home but I'm not overly confident in

her as it is. I'm looking for alternatives in a ST right now. He

has low muscle tone and does go to OT twice a week privately. Our OT

is SIPT certified and she is GREAT! Jack's only true food allergy

is eggs and milk but he does show sensitivities to wheat and

gluten. He is on a GFCF that has done wonders for his GI issues

which were horrendous prior to the diet. We supplement the things

he showed to be deficient in according to blood tests except for b12

which he did not do well when taking. Oh, and we do have the toy

microphone you mentioned. Our old ST gave it to him for XMAS one

year. He also has a heirarchy horn, a z-vibe and a knobby tube.

We're on the waiting list for hippatherapy, he's signed up for

swimming lessons, we have therapy balls and disc swings he has to

use his core for at home. I agree that the ISD needs to provide him

one-on-one ST but our district doesn't give that to anyone - not

ever. Even when he was in the ECI program they only qualified him

for 30 minutes twice a month even though he was completely

nonverbal.

I'm beyond frustrated as I've done just about eveything I think I've

read or been advised to do and my son still cannot find his voice.

Sigh..................

> > Hi and all,

> >

> > Wow this is a popular topic today -and one that was almost never

> > talked about when my son Tanner was diagnosed just 4 years ago!

> But

> > I do see there is still much confusion about oral motor

disorders.

> >

> > I sent an email to another advisor of CHERAB and Speechville

about

> > this, Sara Rosenthal CCC SLP

> >

>

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

> > Sara is the creator of Talk Tools, which you recommended, among

> > many other techniques to help our kids.

> >

> > , even though in a few cases this would be possible, I

> > wouldn't assume that a child that doesn't blow bubbles or imitate

> > doesn't " get it " . There could be numerous reasons for this. In

> > your child's case for example it sounds like there may be motor

> > planning issues of the body. At 5 your son may have more in his

> motor memory

> > now and thus is able to do more. Or perhaps he didn't understand

> prior -I

> > wouldn't know. Most kids with appropriate therapy don't take this

> long.

> >

> > But back to the not being able to imitate funny faces or blow

> > bubbles or lick food off their lips...on command (key word) -

> those

> > are all signs of oral apraxia, but they could be from a weakness

> > problem too or instead. My parent friendly rule of thumb is if

> you

> > see a child do it when not thinking about it, it's probably

> > apraxia. If you never see your child do it ever -it's probably

> > weakness. And again -it can be a combination of the two. It's

> not

> > that confusing when you have a few years to study it up close and

> > work through it with therapy (not as a therapist -as a mom!)

> >

> > On top of motor planning and weakness issues (and receptive

> ability

> > in those cases) you can also throw eating and feeding as well as

> > sensory problems into the mix too. And yes a child can have one

> > aspect and no other -but typically or almost always as far as

> anyone

> > knows -a child that has oral apraxia will have verbal apraxia -

but

> > an adult who acquires oral apraxia can have that without verbal

> > apraxia.

> >

> > Most late talkers (again) have average to above average ability,

> > it's just that we don't understand them -and that's the only way

> for

> > them to express their ability to understand sometimes -us. They

> > need us more than the professionals who today can still be

> ignorant,

> > to try to find ways to help them make themselves understood. A

> way

> > to communicate.

> >

> > Just like anything -children with impairments of communication do

> > not just outgrow these issues on their own, they need appropriate

> > interventions. is a perfect example of a child that grew up

> > and now can talk and write...but a child who obviously was

> deprived

> > of what was appropriate therapy for him. I'm sure from speaking

> to

> > that everyone believed they did " all they could " to help

him

> > back then. You only know what you know. Thank goodness he's

> getting the help he needs today.

> > http://www.cherab.org/news/.html

> >

> > I'll post Sara's response as soon as she sends it, but in the

> > meantime -speaking of only knowing what you know, again -this

> topic

> > if fully talked about from a professional and parent point of

view

> > in The Late Talker. (libraries/bookstores carry it -or you can

> ask for them to

> > order it for you) http://www.speech-express.com/late.talker.html

> >

> > There is a page on oral motor issues here which Sara helped to

> write

> > which have warning clues of various oral motor disorders.

> > " Oral Apraxia is a disorder where the child, who typically is

> > a " late talker " is unable to coordinate and/or initiate movement

> of

> > their jaw, lips and tongue (articulators) on command.

> > An Oral Motor Disorder, which could be a different oral motor

> > problem than apraxia (could be from weakness/dysarthria for

> example)

> > is the second type, in which the child is unable to coordinate

> > and/or initiate movement of normal eating movements (vegetative

> > activities.) "

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

> >

> > This is Sara's homepage

> > http://www.oromotorsp.com

> >

> > =====

> >

April 23, 2008

Hi Carla,

I usually do not post often as I am new to the praxia world and feel

the other ladies have more knowledge but my almost 3 year old son

who is on the spectrum and has apraxia had started to talk a little

bit so I want to share our experience:

His ABA team recognized he might have apraxia and they concentrated

on teaching him funny sounds:

a

o

i

e

u

uh - oooh

mmm

then

ma

ba

ta

then

ma-ma,

ta-ta,

ba-ba

cow says : m -ooo

sheep says: b-aaaa

This helped him, since they broke it down and worked at it slowly

while having fun.

Is his aba team doing something like this?

He then started prompt speech therapy.

Since a while ago he has been on gfcf, pro efa, multi vitamins, mg..

And recently his DAN doctor suggested b12 injections. We saw change

literally over night. Next morning he pointed to daddy's shoes and

said daddy, and pointed some more and said few more words. This was

1.5 month ago and at that time the B12 was given in combination with

folic acid and niacin and he had increase in behaviors, so we

stopped and the spontaneous language stopped as well. Few weeks ago

we started again with B12 only every third day and even though I am

afraid to say it, we think he is talking now. He is requesting,

pointing and labeling..His ABA team can't catch up. It is

incredible. The words are often not easily understood, but there are

a lot of words that have great approximations and he is trying which

is really important for now.

He signs, he practices in bed.

Some of the words that are recognizable

mou(th)

eye

(n)ose

mife for knife

ba(g)

©ome

ba by

up

There are too many words I can't even list. I am still afraid that

he'll somehow go backwards and lose this, but it seems that everyday

he is adding words.

When we come home now he is so happy and says daddy and mommy. It's

the best.

We personally haven't seen this kind of surge in language with

proefa, but we did see some improvement with that too. However the

b12 is helping and it is so obvious.

GL,

Nati

P.S Just noticed now that you posted that he did not take the b12

well, was it just b12 or were there any additional susptences in as

well?

-- In , " Carla "

<carlarobbins@...> wrote:

>

> Hi!

>

> Jack has a PDD-NOS diagnosis. Does not have an apraxia diagnosis

> yet. No real speech diagnosis other than " delay " . I have asked

our

> ST for advice on stuff to do at home but I'm not overly confident

in

> her as it is. I'm looking for alternatives in a ST right now. He

> has low muscle tone and does go to OT twice a week privately. Our

OT

> is SIPT certified and she is GREAT! Jack's only true food allergy

> is eggs and milk but he does show sensitivities to wheat and

> gluten. He is on a GFCF that has done wonders for his GI issues

> which were horrendous prior to the diet. We supplement the things

> he showed to be deficient in according to blood tests except for

b12

> which he did not do well when taking. Oh, and we do have the toy

> microphone you mentioned. Our old ST gave it to him for XMAS one

> year. He also has a heirarchy horn, a z-vibe and a knobby tube.

> We're on the waiting list for hippatherapy, he's signed up for

> swimming lessons, we have therapy balls and disc swings he has to

> use his core for at home. I agree that the ISD needs to provide

him

> one-on-one ST but our district doesn't give that to anyone - not

> ever. Even when he was in the ECI program they only qualified him

> for 30 minutes twice a month even though he was completely

> nonverbal.

>

> I'm beyond frustrated as I've done just about eveything I think

I've

> read or been advised to do and my son still cannot find his

voice.

> Sigh..................

>

> > > Hi and all,

> > >

> > > Wow this is a popular topic today -and one that was almost

never

> > > talked about when my son Tanner was diagnosed just 4 years ago!

> > But

> > > I do see there is still much confusion about oral motor

> disorders.

> > >

> > > I sent an email to another advisor of CHERAB and Speechville

> about

> > > this, Sara Rosenthal CCC SLP

> > >

> >

>

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

> > > Sara is the creator of Talk Tools, which you recommended, among

> > > many other techniques to help our kids.

> > >

> > > , even though in a few cases this would be possible, I

> > > wouldn't assume that a child that doesn't blow bubbles or

imitate

> > > doesn't " get it " . There could be numerous reasons for this. In

> > > your child's case for example it sounds like there may be motor

> > > planning issues of the body. At 5 your son may have more in his

> > motor memory

> > > now and thus is able to do more. Or perhaps he didn't

understand

> > prior -I

> > > wouldn't know. Most kids with appropriate therapy don't take

this

> > long.

> > >

> > > But back to the not being able to imitate funny faces or blow

> > > bubbles or lick food off their lips...on command (key word) -

> > those

> > > are all signs of oral apraxia, but they could be from a

weakness

> > > problem too or instead. My parent friendly rule of thumb is if

> > you

> > > see a child do it when not thinking about it, it's probably

> > > apraxia. If you never see your child do it ever -it's probably

> > > weakness. And again -it can be a combination of the two. It's

> > not

> > > that confusing when you have a few years to study it up close

and

> > > work through it with therapy (not as a therapist -as a mom!)

> > >

> > > On top of motor planning and weakness issues (and receptive

> > ability

> > > in those cases) you can also throw eating and feeding as well

as

> > > sensory problems into the mix too. And yes a child can have one

> > > aspect and no other -but typically or almost always as far as

> > anyone

> > > knows -a child that has oral apraxia will have verbal apraxia -

> but

> > > an adult who acquires oral apraxia can have that without verbal

> > > apraxia.

> > >

> > > Most late talkers (again) have average to above average

ability,

> > > it's just that we don't understand them -and that's the only

way

> > for

> > > them to express their ability to understand sometimes -us. They

> > > need us more than the professionals who today can still be

> > ignorant,

> > > to try to find ways to help them make themselves understood. A

> > way

> > > to communicate.

> > >

> > > Just like anything -children with impairments of communication

do

> > > not just outgrow these issues on their own, they need

appropriate

> > > interventions. is a perfect example of a child that grew

up

> > > and now can talk and write...but a child who obviously was

> > deprived

> > > of what was appropriate therapy for him. I'm sure from speaking

> > to

> > > that everyone believed they did " all they could " to help

> him

> > > back then. You only know what you know. Thank goodness he's

> > getting the help he needs today.

> > > http://www.cherab.org/news/.html

> > >

> > > I'll post Sara's response as soon as she sends it, but in the

> > > meantime -speaking of only knowing what you know, again -this

> > topic

> > > if fully talked about from a professional and parent point of

> view

> > > in The Late Talker. (libraries/bookstores carry it -or you can

> > ask for them to

> > > order it for you) http://www.speech-

express.com/late.talker.html

> > >

> > > There is a page on oral motor issues here which Sara helped to

> > write

> > > which have warning clues of various oral motor disorders.

> > > " Oral Apraxia is a disorder where the child, who typically is

> > > a " late talker " is unable to coordinate and/or initiate

movement

> > of

> > > their jaw, lips and tongue (articulators) on command.

> > > An Oral Motor Disorder, which could be a different oral motor

> > > problem than apraxia (could be from weakness/dysarthria for

> > example)

> > > is the second type, in which the child is unable to coordinate

> > > and/or initiate movement of normal eating movements (vegetative

> > > activities.) "

> > >

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

> > >

> > > This is Sara's homepage

> > > http://www.oromotorsp.com

> > >

> > > =====

> > >

April 23, 2008

The first thing you need to do ASAP is secure an appropriate

diagnosis for your child. Is he autistic? Or no? Is he apraxic?

Or no? If no to both then why the delay in speech? They are

treating him as if he is autistic right now because that's assumed by

his PDD NOS " diagnosis " (have you ever read this written by Dr.

Bernard Rimland? http://www.autism.org/pdd.html )

What state are you in? Perhaps I or others can help you find a

competent neuromedical doctor. At this point it's not just the SLP

or OT who will be able to help you secure the appropriate therapies

if it is apraxia. It does not matter if nobody in the history of

your town ever received one on one -that just tells me that you don't

have advocates in your town. If your town's school is in the US than

it receives Federal monies and has to by law follow the Federal

(not just State or City) laws. The Federal Law is FAPE in the LRE or your

child is entitled to a free and appropriate public education in the

least restrictive environment and you'd be shocked how much is

offered once you learn how to advocate. Rule one never say " best "

say " appropriate " whenever you want to say best. Or " inappropriate "

because the school is not obligated by law to offer your child the

best therapy and placement -only what is appropriate. If they can

not provide appropriate placement and therapy in district than you

can seek " out of district placement " or to have an " expert " come in

to train the current staff and work with your son or to keep your

child in district for certain services and to pay for private therapy

at home a few days a week. If you don't ask you won't get any of

that for your child as I've never known for schools to just offer any

of the above without advocacy.

But first you need (again) to know why your son is not speaking

because right now as far as the school is concerned and as far as

your son's diagnosis goes -they are doing what is appropriate for an

autistic child. This is the slippery slope of shoving all late

talker children under the autism umbrella using terms like PDD

NOS. Most children that have apraxia with sensory issues could be

diagnosed (and many are) as PDD NOS -but many of us didn't allow

inappropriate diagnosis labels that will hurt our child from securing

appropriate therapies. Unlike children with autism -ABA is not

appropriate for apraxia and may be detrimental -and besides -all the

ABA therapy in the world will not bring them a voice. No matter what

age the misdiagnosis is found -even later in life like -

http://www.cherab.org/news/.html they will need intensive and

appropriate speech therapies to be taught 'how' to talk. Apraxic

children/teens/adults who can not yet speak desperately want to be

able to communicate verbally -but they can't. Here's a matrix page

of the amount of therapy your child may be entitled to in the school

depending upon the severity of the delay in speech

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

You need to seek the appropriate amount and type of therapies.

First secure appropriate diagnosis from reputable professionals

(notice how I can use the words appropriate and

inappropriate in just about every sentence if I want?) If you do

find out that your child was misdiagnosed with autism -or has both

autism and apraxia -you will request in writing that they " reopen the

IEP " and they will get back to you to set up that meeting within ___

days. Paper trail everything. It sounds (I don't know) like your

child is still young -but school age and essentially nonverbal is not

a good thing historically speaking. With the autism label on top

it's clear where he will be headed without advocacy. We can help you

advocate step by step here -but first let us know what state you are

in.

=====

April 23, 2008

Nati,

How great that your very smart boy can let the worls know it! I have

been there with the feeling of wondering when it will leave. The last

time we got a surge the language appears to have stayed. It is also

when I made a conscious decision to stop waiting for the other shoe

to drop. Hang in there and enjoy the win!

L

> >

> > Hi!

> >

> > Jack has a PDD-NOS diagnosis. Does not have an apraxia diagnosis

> > yet. No real speech diagnosis other than " delay " . I have asked

> our

> > ST for advice on stuff to do at home but I'm not overly confident

> in

> > her as it is. I'm looking for alternatives in a ST right now.

He

> > has low muscle tone and does go to OT twice a week privately. Our

> OT

> > is SIPT certified and she is GREAT! Jack's only true food

allergy

> > is eggs and milk but he does show sensitivities to wheat and

> > gluten. He is on a GFCF that has done wonders for his GI issues

> > which were horrendous prior to the diet. We supplement the

things

> > he showed to be deficient in according to blood tests except for

> b12

> > which he did not do well when taking. Oh, and we do have the toy

> > microphone you mentioned. Our old ST gave it to him for XMAS one

> > year. He also has a heirarchy horn, a z-vibe and a knobby tube.

> > We're on the waiting list for hippatherapy, he's signed up for

> > swimming lessons, we have therapy balls and disc swings he has to

> > use his core for at home. I agree that the ISD needs to provide

> him

> > one-on-one ST but our district doesn't give that to anyone - not

> > ever. Even when he was in the ECI program they only qualified

him

> > for 30 minutes twice a month even though he was completely

> > nonverbal.

> >

> > I'm beyond frustrated as I've done just about eveything I think

> I've

> > read or been advised to do and my son still cannot find his

> voice.

> > Sigh..................

April 24, 2008

SOOOO awesome for your son! We keep waiting for our " magic bullet "

but can't seem to find it yet. It was just Mb12 injections that we

tried and we tried them so many times. I have heard absolutely

incredible results form the injections in other people's kiddos but

it simple made our son a complete mess. Oh, and our ABA team is

doing an approach very similar to what you described. Pretty much

the only thing he says very clearly now is " mamamama " and " moooooo "

which for cow before he would just say " ewwwwwwww " without

the " mmmm " at the beginning. A start I suppose.

Carla

>

> Hi Carla,

>

> I usually do not post often as I am new to the praxia world and

feel

> the other ladies have more knowledge but my almost 3 year old son

> who is on the spectrum and has apraxia had started to talk a

little

> bit so I want to share our experience:

April 24, 2008

The school did not diagnose Jack with PDD-NOS, a Developmental Ped

and a Neurologist did. I do beleive he falls on the spectrum

personally. Besides the speech issues he has many stims and severe

gastrointestinal issues. His GI issues have come a LONG way with

diet and supplements but the stims and the speech are the toughest

issues right now. In the long run, the stims are not as important

as the lack of speech to my husband and I. We want so badly to

communicate with our son. He does tons of signs which we are at

least grateful for that. His ABA program is not " old school " ABA

but more of a Floortime/Verbal Behavior program. He has made many

gains through his ABA program that I am very grateful for. He got

accepted to a Preverbal Program for the summer at the Callier Center

in Dallas where we live and it's Monday through Thursday 9-11:30am

and it's 1:1. I'm bascially looking for ways we can help him at

home - inventive ways to help him. I so appreciate everyone's

valuable advice - everyone is so helpful and knowledgable. Thank

you! Carla

>

> The first thing you need to do ASAP is secure an appropriate

> diagnosis for your child. Is he autistic? Or no? Is he apraxic?

> Or no? If no to both then why the delay in speech? They are

> treating him as if he is autistic right now because that's assumed

by

> his PDD NOS " diagnosis " (have you ever read this written by Dr.

> Bernard Rimland? http://www.autism.org/pdd.html )

>

> What state are you in? Perhaps I or others can help you find a

> competent neuromedical doctor. At this point it's not just the SLP

> or OT who will be able to help you secure the appropriate therapies

> if it is apraxia. It does not matter if nobody in the history of

> your town ever received one on one -that just tells me that you

don't

> have advocates in your town. If your town's school is in the US

than

> it receives Federal monies and has to by law follow the Federal

> (not just State or City) laws. The Federal Law is FAPE in the LRE

or your

> child is entitled to a free and appropriate public education in the

> least restrictive environment and you'd be shocked how much is

> offered once you learn how to advocate. Rule one never say " best "

> say " appropriate " whenever you want to say best.

Or " inappropriate "

> because the school is not obligated by law to offer your child the

> best therapy and placement -only what is appropriate. If they can

> not provide appropriate placement and therapy in district than you

> can seek " out of district placement " or to have an " expert " come in

> to train the current staff and work with your son or to keep your

> child in district for certain services and to pay for private

therapy

> at home a few days a week. If you don't ask you won't get any of

> that for your child as I've never known for schools to just offer

any

> of the above without advocacy.

>

> But first you need (again) to know why your son is not speaking

> because right now as far as the school is concerned and as far as

> your son's diagnosis goes -they are doing what is appropriate for

an

> autistic child. This is the slippery slope of shoving all late

> talker children under the autism umbrella using terms like PDD

> NOS. Most children that have apraxia with sensory issues could

be

> diagnosed (and many are) as PDD NOS -but many of us didn't allow

> inappropriate diagnosis labels that will hurt our child from

securing

> appropriate therapies. Unlike children with autism -ABA is not

> appropriate for apraxia and may be detrimental -and besides -all

the

> ABA therapy in the world will not bring them a voice. No matter

what

> age the misdiagnosis is found -even later in life like -

> http://www.cherab.org/news/.html they will need intensive

and

> appropriate speech therapies to be taught 'how' to talk. Apraxic

> children/teens/adults who can not yet speak desperately want to be

> able to communicate verbally -but they can't. Here's a matrix page

> of the amount of therapy your child may be entitled to in the

school

> depending upon the severity of the delay in speech

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

>

> You need to seek the appropriate amount and type of therapies.

> First secure appropriate diagnosis from reputable professionals

>

> (notice how I can use the words appropriate and

> inappropriate in just about every sentence if I want?) If you do

> find out that your child was misdiagnosed with autism -or has both

> autism and apraxia -you will request in writing that they " reopen

the

> IEP " and they will get back to you to set up that meeting within

___

> days. Paper trail everything. It sounds (I don't know) like your

> child is still young -but school age and essentially nonverbal is

not

> a good thing historically speaking. With the autism label on top

> it's clear where he will be headed without advocacy. We can help

you

> advocate step by step here -but first let us know what state you

are

> in.

>

> =====

>

April 24, 2008

Carla without the diagnosis as to what is causing the delay in

speech -your son's diagnosis of PDD NOS and treatment will remain

appropriate for autism - which is only appropriate for autism.

There are many proven therapies for autism, but autism in itself is not

a speech impairment. If he is autistic he's already in treatment for

that and it sounds like you are going above and beyond to help. It may

be obvious he has a " speech delay " -but that in itself is not a

diagnosis and currently your child's delay is credited to autism not

to a motor planning or weakness or any other speech impairment.

Many of us can help you with tips and tricks and toys to use at home -

that would not replace the intensive and appropriate apraxia therapy

he would need if he also was for example diagnosed with apraxia. I'm

trying to answer you in the bigger picture. You have an essentially

nonverbal school age child diagnosed as autistic...and have not yet

found out the reason for the speech delay. If you don't search for the

reason for the speech delay -again nobody else will. He's autistic -you

agree -so as the school/all are concerned that's the reason.

If you are asking for speech therapy ideas- you need to

know what type of therapy would be most appropriate to help him- if

any. Perhaps his delay in speech is due to just autism? Then you know the

focus isn't on speech therapy.

Perhaps even without going to another neuroMD call the one you went

to and let them know you suspect there may be an underlying and

undiagnosed speech impairment and want them to confirm or rule that

out.

Your child's MD can write a letter to help advocate for services if needed.

There's a secction in The Late Talker book about this.

In this group we have parents that have a child with apraxia and a

child with autism and other members that have a child with both

apraxia and autism. The first thing (again) is to know the reason

for the speech delay. ABA and/or floortime will not bring your child a

voice if his delay is due to an impairment of speech no matter how

nice the therapists are. Most therapists that work with children

are very nice people -but in a few years you may never see them

again. Right now it's about securing appropriate therapies and

placement for your son to help bring him a voice -so you can talk to

him -forever! My hope for you is that one day he is talking and you

have to tell him to be quiet -hard to imagine today but many of us

get there believe me!

One other thing -I've heard from some professionals: some children

that are nonverbal develop stims due to frustrations that drop once

speech comes in. It can be difficult at times to know the difference

where one diagnosis stops and another starts -this is why it's most

important to seek a neuroMD who is knowledgeable about multiple

diagnosis -including apraxia.

The one that is hurt most with a " wrong " or incomplete diagnosis is

your son. I too want to help you get your son verbal -we're on the

same side.

=====

April 24, 2008

Hi Carla,

I too think that you need to get a speech diagnosis for your son.

Based on what you are telling us that he used to say eww instead of

mooo, sounds like he could have some specific speech problem. Could

be appraxia, could be something else. Can you call your son's

neurologist and ask her/him to recommend a specialist (speech

pathologist or neurologist) who has experience with appraxia

(usually the same person could have experience with other speech

disorders too) or try to find a speech pathologist certified in

prompt.

I personally called our neurologist who recommended a great prompt

certified therapist. At the same time my son was going through

evaluation for the SD and I specifically asked the agency who did

the evaluation to send someone experienced with prompt and feeding

issues. This person was the person to diagnose my son with appraxia,

which helped us getting the right therapy.

Carla, I am not sure but maybe there is a difference between MB12

and B12 and maybe B12 only would work better for your son. Ask your

doctor about it.

GL,

Nati

> >

> > Hi Carla,

> >

> > I usually do not post often as I am new to the praxia world and

> feel

> > the other ladies have more knowledge but my almost 3 year old son

> > who is on the spectrum and has apraxia had started to talk a

> little

> > bit so I want to share our experience:

>

April 24, 2008

Thanks Liz,

I hope tha language stays and expands. Still affraid though.

Nati

> > >

> > > Hi!

> > >

> > > Jack has a PDD-NOS diagnosis. Does not have an apraxia

diagnosis

> > > yet. No real speech diagnosis other than " delay " . I have

asked

> > our

> > > ST for advice on stuff to do at home but I'm not overly

confident

> > in

> > > her as it is. I'm looking for alternatives in a ST right now.

> He

> > > has low muscle tone and does go to OT twice a week privately.

Our

> > OT

> > > is SIPT certified and she is GREAT! Jack's only true food

> allergy

> > > is eggs and milk but he does show sensitivities to wheat and

> > > gluten. He is on a GFCF that has done wonders for his GI

issues

> > > which were horrendous prior to the diet. We supplement the

> things

> > > he showed to be deficient in according to blood tests except

for

> > b12

> > > which he did not do well when taking. Oh, and we do have the

toy

> > > microphone you mentioned. Our old ST gave it to him for XMAS

one

> > > year. He also has a heirarchy horn, a z-vibe and a knobby

tube.

> > > We're on the waiting list for hippatherapy, he's signed up for

> > > swimming lessons, we have therapy balls and disc swings he has

to

> > > use his core for at home. I agree that the ISD needs to

provide

> > him

> > > one-on-one ST but our district doesn't give that to anyone -

not

> > > ever. Even when he was in the ECI program they only qualified

> him

> > > for 30 minutes twice a month even though he was completely

> > > nonverbal.

> > >

> > > I'm beyond frustrated as I've done just about eveything I think

> > I've

> > > read or been advised to do and my son still cannot find his

> > voice.

> > > Sigh..................

>

April 24, 2008

Hey Carla,

I started thinking what else helped my son and remembered the " Babby

Babble " videos. He loved to watch them and after a while tried to

imitate some of the mouth movements and sounds.

I wish there were more videos like that.

Nati

> >

> > Hi Carla,

> >

> > I usually do not post often as I am new to the praxia world and

> feel

> > the other ladies have more knowledge but my almost 3 year old son

> > who is on the spectrum and has apraxia had started to talk a

> little

> > bit so I want to share our experience:

>

April 24, 2008

Carla, thanks for sharing this. We have been doing a B12 nasal spray for

our son which makes quite a mess and I am thinking seriously about maybe

trying the shots. Our son has about 10 words now. He will be 3yr next

Tuesday and I long for the day to simply here “Hi mom!” We too have tried

soooo many things, things that worked for other people and was their “magic

bullet” but did NOTHING for our son. It is very discouraging and sometimes

I wonder what gets us through each day. I get so anxious about it.

Recently our son has started saying moo when he sees a cow or when he is

playing with the farm and farm animals we bought him.

Your son saying mamama and mooooo is a start, as you said, because they do

have to start somewhere.

Will keep you in my thoughts.

Ann

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