Re: The Late Talker book, breathing support and EPA

January 20, 2009

Hi Cris and welcome!

Thank you so much for all your kind words -it really means so much and

I'm just happy I am able to help you know that you are not alone and

that there is help for you and your child.

I don't know offhand which SLPs to recommend in California but know we

have quite a few members from that state who may be able to contribute

suggestions based upon where in California you are. Here is a list

from Speechville:

(and Suzi Knowles (who raised twin girls with apraxia) is one of my

Facebook friends as well as a member of the online CHERAB Facebook page)

Support Contacts*:

Contact: Suzi Knowles

California

E-Mail: suzi_knowles@...

V.O.I.C.E.S. (Victory Over Impairments of Communication, Expression

and Speech) is a non-profit organization founded in January, 2003 by

Tamara Hill and Byron , parents of a child with Apraxia.

V.O.I.C.E.S. is a direct result of the desire to network with parents

and professionals who care about the unique issues speech disordered

children face.

V.O.I.C.E.S. was created to be a resource for families with children

who have Apraxia and other communication disorders. Through

V.O.I.C.E.S., we will help raise awareness of Apraxia and other

communication disorders and become a part of the solution, helping

evey child to be heard and understood and achieve empowerment through

communication!

Contact Us!

Please drop us a line!

E -mail: voices_inc@...

Phone: 310-910-3555

Website: http://www.4voices.org

Apraxia_Dyspraxia_CA is a California-based internet support group for

parents of children with Apraxia or Dyspraxia who live in California.

Due to the limited local resources on this disorder, a parent (and

child) can feel isolated. By banding together to share what we have

each learned, we hope to end that isolation. We will cover all types

of Apraxia including verbal, oral, limb, motor, and global (a.k.a.

DCD, Developmental Coordination Disorder). Our group also includes the

related soft signs such as Hypotonia and Sensory Integration

Dysfunction and other disorders such as Dystharia that may co-exist

with Apraxia. We will share local resources and therapies that we have

discovered, as well as giving our personal doctor and therapist

recommendations.

Come join us as we discuss all the alternatives, such as the variety

of therapy options as well as supplements. We are constantly building

our list of resources in our Links section of our site. Come share

your experiences and learn from ours. We will get through this maze

together. Welcome!

Contacts: Jill

To join the Apraxia_Dyspraxia_CA group via the internet see the

website below:

Website: Apraxia_Dyspraxia_CA/

To subscribe via e-mail, send an e-mail to:

Apraxia_Dyspraxia_CA-subscribe

If you have questions prior to joining, e-mail Jill the list owner at:

Apraxia_Dyspraxia_CA-owner

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

Yes you are using the correct EPA -either you want ProEPA

(professional) or EPA (commercial) You do not want to use the Xtra!

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

I have a few more articles below from the archives from Sara as she is

an adviser to CHERAB.

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.talktools.net

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.

>

> 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.talktools.net

>

> =====

>

January 20, 2009

OMG - how did you get the school special education direction to approve getting

an SLP certified in PROMPT???? My son, , is 3 and attends preschool

through our public school system in Ohio. I was told there are no therapists in

the district certified in PROMPT. has had miraculous success with it -

and I was disappointed to hear they would not be able to provide him with it.

They told me they have several kids with an apraxia diagnosis in the program -

so I can't believe they haven't had anyone certified!!

Gretchen

From: Cris <crisbarker1@...>

Subject: [ ] The Late Talker book, breathing support and EPA

Date: Tuesday, January 20, 2009, 1:52 PM

Dear

I am the mother of a 3 year old son diagnosed with apraxia. I consider finding

this group

a blessing from the skies and now that I am reading your book everything is

coming

together. I can not put the book now. It is as if you wrote it just for our son

because it

totally describes him. Gosh, if I ever go to NJ I want to take you out to

dinner!

Anyhow, I've started my son on Complete 3-6-9 (2 caps) and now I want to add

EPA. At

the store this morning I found a bottle of Nordic Naturals " EPA " and also " EPA

xtra " . I

bought the EPA. Is that right?

About the breathing... It is exactly what is happening to my son. This problem

has been

going on since he was a baby. He even had to spend 12 days in the NICU because

he

couldn't coordinate breathing/swallowing/eating. Nowadays he is a super slow

eater, can

only drink water 1 sip at a time and seems to really have to work to breathe. I

have taken

him to an ENT and all is well medically. I loved the article on the horn therapy

and the

other things that you did with your son to work on his balance etc. Do you know

any good

SLP in southern California? Everyone told me this was one of the best states as

far as

school districts and regional centers but I will tell you that all the SLPs that

I have worked

with don't seem to know much about apraxia. I forwarded the horn therapy article

to our

school SLP and our private SLP. I am attending a Kauffman class in Pasadena in

February. I

got the special ed director to approve the school SLP to get certified in

PROMPT. What are

other things that I can do?

You are the greatest. Thanks for this gift. The gift of information and

awareness.

Sincerely

Cris

------------------------------------

January 20, 2009

Gretchen have you secured private evaluations to find out what's

appropriate for your child?

Each child... " is entitled to a Free and Appropriate Public Education

in the Least Restrictive Environment. There are quite a few of us

here in this group who received services and placement that we were

told our child was not entitled to. This is where advocacy (and

squeaky wheels) come in.

If a school district can not provide appropriate therapy and placement

then their choices would include

1. Bringing in an expert to work with and train the existing staff

2. Paying for the child to attend therapy outside of the school

3. Paying for out of district placement.

As you can see from the above list -sending the school's SLP for

training in the options, especially since there will probably be more

than one child with apraxia in the school this year and next and the

year after that...is probably most cost effective. When I still lived

in NJ, Summit school district (not Summit Speech School -the actual

district) brought in Deborah Hayden herself to work with one of their

students with apraxia and to evaluate him...yes really.

What I advise is that even though through your town's school you can

have them pay for outside the school district evaluations, is that

each parent secure private evaluations and pay out of pocket or

through insurance for them. I happen to know in at least two

instances that even though the professional paid for by the school is

trying to advocate for what's best for that child -she or he is still

on that school's dime and didn't want to push for " too much " I never

heard that from any of Tanner's private doctors or therapists.

Tanner, like all children, is " ...(go back to beginning of email and

re read if not clear)

=====

January 20, 2009

Our school slp is PROMPT trained. I got the developmental pediatrician to say

she needed it.

sl

The information transmitted is intended only for the person or entity to which

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Sharon Lang

From: Cris <crisbarker1>

Subject: [childrensapraxiane t] The Late Talker book, breathing support and EPA

@groups. com

Date: Tuesday, January 20, 2009, 1:52 PM

Dear

I am the mother of a 3 year old son diagnosed with apraxia. I consider finding

this group

a blessing from the skies and now that I am reading your book everything is

coming

together. I can not put the book now. It is as if you wrote it just for our son

because it

totally describes him. Gosh, if I ever go to NJ I want to take you out to

dinner!

Anyhow, I've started my son on Complete 3-6-9 (2 caps) and now I want to add

EPA. At

the store this morning I found a bottle of Nordic Naturals " EPA " and also " EPA

xtra " . I

bought the EPA. Is that right?

About the breathing... It is exactly what is happening to my son. This problem

has been

going on since he was a baby. He even had to spend 12 days in the NICU because

he

couldn't coordinate breathing/swallowin g/eating. Nowadays he is a super slow

eater, can

only drink water 1 sip at a time and seems to really have to work to breathe. I

have taken

him to an ENT and all is well medically. I loved the article on the horn therapy

and the

other things that you did with your son to work on his balance etc. Do you know

any good

SLP in southern California? Everyone told me this was one of the best states as

far as

school districts and regional centers but I will tell you that all the SLPs that

I have worked

with don't seem to know much about apraxia. I forwarded the horn therapy article

to our

school SLP and our private SLP. I am attending a Kauffman class in Pasadena in

February. I

got the special ed director to approve the school SLP to get certified in

PROMPT. What are

other things that I can do?

You are the greatest. Thanks for this gift. The gift of information and

awareness.

Sincerely

Cris

------------ --------- --------- ------

January 20, 2009

Hi !

has had several private evaluations. Should I ask his Developmental

Pediatrician and speech therapist to write something that would detail what is

best for him? Do SLP's and pediatricians usually do stuff like that for

IEP's? Do the school systems listen or do they count on their own SLP's for

diagnosis and treatment plans?

My IEP meeting is scheduled for February 9th. I called it after I saw 's

recent IEP progress report. It was not good - and the SLP blamed most of

that on " not having enough time to address certains issue. "

At the IEP meeting, I hope to accomplish several things...

1. private instead of group therapy

2. more therapy - right now the IEP states that he only gets 30 minutes per

month - which equals less than 10 minutes per week!

3. Extended Summer services

Here is the problem - I signed Coop's IEP BEFORE anyone knew he had apraxia. He

wasn't diagnosed until about 6 weeks into the school year. I feel like his

treatment no longer matches his diagnosis - which is oral and verbal apraxia.

has made such tremendous progress this year. I look back to his third

birthday in September and I can see the difference. But - there is still so

much more work to be done. The poor kid is 3.6 years old and he has the

toughest time saying his own name. It's heartbreaking.

So I guess as I prepare for the IEP meeting - I am now also interested in adding

one more thing to my wish list - I want to get PROMPT therapy at school.

I guess I just need to figure out which professionals can back me up on that

- and then get them to write their opinions on the matter.

Bottom line - we live in a great suburb of Columbus, Ohio. Our district is one

of the largest in the entire state. I can't imagine that getting someone

certified in PROMPT would be a huge hurdle, but so far - the district has been

combative about EVERYTHING.

Gretchen Walsh

Hilliard, OH

On Tue, 1/20/09, kiddietalk <kiddietalk@...> wrote:

From: kiddietalk <kiddietalk@...>

Subject: [ ] Re: The Late Talker book, breathing support and

EPA

Date: Tuesday, January 20, 2009, 5:09 PM