Re: Charlie's 1st SLP evaluation today

[Guest guest]

Oh , I sure hope no one flames you!! Shame on them if they do. You are just

trying to process all of this...and not because you have APD ;-), you are mom

asking questions to better understand your son so you can help him.

Age 3 is NOT late for these diagnoses. I know quite a few SLP's who have a hard

time diagnosing children that young! It is awesome that he has great receptive

skills, just give him time (and lots of the right kind of speech therapy for

people with apraxia). My son is about to turn 5 and hasn't even reached the

point where your son is. He is using an AAC device until people can understand

him better, which might take forever!

Honestly, many times our kiddos need outside help (not just the school

district). Hopefully you have a receptive school district who has a SLP

knowledgeable in apraxia. Look into you medical insurance and see what they will

cover. Also find someone (OT or ST) who is good at oral motor work. It did

wonders for my son. We actually had to improve that part, before he could really

benefit from speech.

Just take this one day at a time. This group is extremely knowledgeable. Click

on " Links " on the group page. There is a ton of information there. Read " The

Late Talker " if you haven't already.

[Guest guest]

Hi Tracey!

I totally get the whole anti SLP thing from adults who grew up with speech

issues years ago- because I just posted an archive the other day that shared how

Barbara Walters was diagnosed as a child with apraxia and spent years in therapy

and according to an assistant that works for Rosenthal (a very

well known oral motor speech expert) -Barbara " hates " SLPs and didn't even want

to speak with who offered to speak with her. Well to Barbara Walters

-where would she be without the therapy? I mean she's one of the largest if not

the queen (Oprah is Queen of talk right?) of talk show people! So years ago who

knows how speech therapy went down -but I can tell you that my son Tanner who is

14 years old and spent much of his life in therapy always loved his therapists,

and when I cut Dakota off from speech therapy when his speech surged at one

point he was so upset because he LOVED therapy too. And not only did my boys

love therapy but there is a huge difference in those that have therapy and those

that don't.

If you listen to someone with apraxia that doesn't get therapy or the

appropriate therapy they have a flaccid quality to their speech that makes them

sound deaf because they don't learn how to use their mouth and tongue correctly.

Besides we have members who have children nonverbal at 4, 6, teen and up till

adult. Apraxia is not a condition that one overcomes without therapy. But with

therapy one can overcome apraxia with therapy and strategies. With an

impairment of speech such as what you and your husband have as you probably know

-when you are tired, stressed or sick you may break down in speech even if you

are able to speak normally most of the time. That's pretty normal.

So about anti-therapy thoughts, research proves with numerous studies on early

intervention the importance of it. The following are just 2 random links- but a

wealth of info in this area

http://www.rand.org/pubs/research_briefs/RB9145/index1.html

http://www.cincinnatichildrens.org/svc/alpha/s/speech/family/default.htm

And here's something I wrote awhile ago

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

The Einstein theory book on late talking has one thing going for it...it's

correct MOST of the time as 75% of late talkers are just that -kids with

developmental delays in speech. So of course that book can stand strong with

most that have late talkers having just that -kids that talk late. I guess the

author doesn't care about the rest with what has to be a too bad so sad attitude

to those of us with kids in the other 25% Shame on you mister!!!

Early intervention if not needed will be proven right away by a child that

starts talking and no harm is done except perhaps waste of time and money on the

tax payer. On the other hand- the wait and see approach for any child with an

impairment of speech -you just wasted precious time. My goal was never to look

back and say " if only " and that author -who even knows him?! Your child on the

other hand is always going to be your child -and is 100 percent dependent on you

making the right choices for him. So seek numerous opinions -but no way to wait

and see. So I'm here to stick up for the minority.

Also -therapy today may not be the therapy that you and your husband had as a

kid. I know for example I hate GFCF diets because I grew up on one due to being

diagnosed with celiac and spending early life in the hospital as I talk about

here http://pursuitofresearch.org/?p=1047 & preview=true (yes one of my baby

pictures) But I know today there are so many more options. And look at ABA

therapy -while it may not always be appropriate today if not needed -back when

it started they used electroshock therapy with ABA-and diagnosed autism in

children as " childhood schizophrenia " So clearly we've come a long way from

years ago. Perhaps it's because research and even without research just outcome

over time shows what works and what doesn't and if we follow what works we are

bound to improve.

The diagnosis of auditory processing disorder in a 3 year old is in itself

questionable. It would be something that couldn't be diagnosed until school age

I heard from quite a few respected neurological doctors. My son Dakota who is

now 16 was diagnosed with ADHD and APD but it's also quite difficult to know the

difference between the two I've heard- so again questionable for your child to

be diagnosed in this one visit. Another question I have is I understand the

diagnosis of oral and verbal apraxia -but the SLP also diagnosed the global

aspect which would probably need an occupational therapist or a neuromedical

standpoint as well in my opinion. So...why did this SLP say " maybe " to OT?

I'd say almost any child with apraxia OT is a given. This is the same SLP that

diagnosed global aspects to the apraxia? I'd say you need another eval from a

neuromedical doctor. Maybe let us know what state or country you are in so we

can suggest professionals or support sources in your area? I'm a huge believer

in second opinions anyway.

And another thing is that 3 years old is not at all terribly late for a

diagnosis -don't you worry about that. But yes your child if qualified is

entitled to early intervention- again let me know if you are in the US. In the

US your child would now be in the placed in the early intervention program

through your town's school with something called an IEP. And IEP is essentially

a legal contract between the school and family for the child that has specific

goals and methods laid out. Goals can be for any time period -short and long

term, and you can have in the IEP that you meet every ____ months to go over

progress and reevaluate goals. It's highly recommended to have a professional

outside the school to assist you in overseeing goals as the school by law is

only required to provide what is appropriate where you as a parent are looking

for what is best. The private SLP will be able most times to advocate stronger

for your child than the school professional. Sometimes the school

professional's hands are tied for various reasons. I've heard this from

professionals that work in the school.

So you want to see what the school system has to offer and see if it's

appropriate for your child. If it's not the school's program is not a one size

fits all as it's sometimes presented initially. The IEP stands for individual

education plan.

You say your child has about 80 words and is using several 3 to 5 word phrases.

That doesn't sound that severe to me, especially as there has not been therapy

up till now as apraxia does not self resolve. Then again we as parents tend to

overstate the speech since we understand so much more than others. Like to me

" ma ma mommy? " was a 3 word sentence for Tanner asking " where is mommy? " Really

-I counted that as a 3 word sentence. And perhaps it was in theory -but in

reality that's an apraxic 3 word sentence

So if you can provide a few examples of words and sentences.

Also I agree with Jenna about looking into The Late Talker book that I co

authored with my son's neurodevelopmental pediatrician. You can go to google

books and read some of it online for free.

So glad you started fish oils! We have had such remarkable results with

nutritional intervention with essential nutrients. here is information on fish

oils

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-\

autism-and-other-communication-impairments/ and typically with fish oils we see

first results in a day to 3 weeks -norm is about a week. The other thing to

look into is NV- here are some links on that

Areas of surge for NV

http://pursuitofresearch.org/pursuit-of-research/

Why we started using this

http://pursuitofresearch.org/the-history-why-nutriiveda-for-therapeutic-use-for-\

autism-apraxia-etc/

Info to share with your child's doctors

http://pursuitofresearch.org/find-a-professional/

Frequently asked questions

http://pursuitofresearch.org/products/nutriiveda/frequently_asked_questions/

Testimonials

http://pursuitofresearch.org/products/nutriiveda/nutriiveda-testimonials/

Let me know if you have any questions- and don't you worry -there is so much

hope no matter what your son's actual diagnosis is!

=====

[Guest guest]

,

When you find the right SLP-in public schools or privately, Charlie will

improve. I know that I can get my clients to produce new sounds within the

1st session. Look for an SLP who is trained in:

SRJ oral placement hierarchies, PROMPT, Beckman stretches, & Kaufman

technique.

Yes, speech therapy has changed MUCH since the 60s and 70s!

An auditory processing diagnosis for a 3yo is not appropriate because the

neural pathways don't fully mature until 6-7yrs old.

In what city and state do you live?

Warmest wishes,

Barbara

Barbara A. , M.S., CCC-SLP

CEO/ Help Me Speak, LLC

<http://www.helpmespeak.com/> http://www.helpmespeak.com

(o) 410-442-9791 (f) 410-442-9783

2500 Wallington Way; Suite 103

Marriottsville, MD 21104

follow us on FaceBook:

http://www.facebook.com/ffcentralmaryland#!/pages/Help-Me-Speak-LLC/10462885

2032

Call me with any questions about NutriiVeda!

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From:

[mailto: ] On Behalf Of kiddietalk

Sent: Friday, March 18, 2011 11:24 PM

Subject: [ ] Re: Charlie's 1st SLP evaluation today

Hi Tracey!

I totally get the whole anti SLP thing from adults who grew up with speech

issues years ago- because I just posted an archive the other day that shared

how Barbara Walters was diagnosed as a child with apraxia and spent years in

therapy and according to an assistant that works for Rosenthal

(a very well known oral motor speech expert) -Barbara " hates " SLPs and

didn't even want to speak with who offered to speak with her. Well to

Barbara Walters -where would she be without the therapy? I mean she's one of

the largest if not the queen (Oprah is Queen of talk right?) of talk show

people! So years ago who knows how speech therapy went down -but I can tell

you that my son Tanner who is 14 years old and spent much of his life in

therapy always loved his therapists, and when I cut Dakota off from speech

therapy when his speech surged at one point he was so upset because he LOVED

therapy too. And not only did my boys love therapy but there is a huge

difference in those that have therapy and those that don't.

If you listen to someone with apraxia that doesn't get therapy or the

appropriate therapy they have a flaccid quality to their speech that makes

them sound deaf because they don't learn how to use their mouth and tongue

correctly. Besides we have members who have children nonverbal at 4, 6, teen

and up till adult. Apraxia is not a condition that one overcomes without

therapy. But with therapy one can overcome apraxia with therapy and

strategies. With an impairment of speech such as what you and your husband

have as you probably know -when you are tired, stressed or sick you may

break down in speech even if you are able to speak normally most of the

time. That's pretty normal.

So about anti-therapy thoughts, research proves with numerous studies on

early intervention the importance of it. The following are just 2 random

links- but a wealth of info in this area

http://www.rand.org/pubs/research_briefs/RB9145/index1.html

http://www.cincinnatichildrens.org/svc/alpha/s/speech/family/default.htm

And here's something I wrote awhile ago

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

The Einstein theory book on late talking has one thing going for it...it's

correct MOST of the time as 75% of late talkers are just that -kids with

developmental delays in speech. So of course that book can stand strong with

most that have late talkers having just that -kids that talk late. I guess

the author doesn't care about the rest with what has to be a too bad so sad

attitude to those of us with kids in the other 25% Shame on you mister!!!

Early intervention if not needed will be proven right away by a child that

starts talking and no harm is done except perhaps waste of time and money on

the tax payer. On the other hand- the wait and see approach for any child

with an impairment of speech -you just wasted precious time. My goal was

never to look back and say " if only " and that author -who even knows him?!

Your child on the other hand is always going to be your child -and is 100

percent dependent on you making the right choices for him. So seek numerous

opinions -but no way to wait and see. So I'm here to stick up for the

minority.

Also -therapy today may not be the therapy that you and your husband had as

a kid. I know for example I hate GFCF diets because I grew up on one due to

being diagnosed with celiac and spending early life in the hospital as I

talk about here http://pursuitofresearch.org/?p=1047

<http://pursuitofresearch.org/?p=1047 & preview=true> & preview=true (yes one

of my baby pictures) But I know today there are so many more options. And

look at ABA therapy -while it may not always be appropriate today if not

needed -back when it started they used electroshock therapy with ABA-and

diagnosed autism in children as " childhood schizophrenia " So clearly we've

come a long way from years ago. Perhaps it's because research and even

without research just outcome over time shows what works and what doesn't

and if we follow what works we are bound to improve.

The diagnosis of auditory processing disorder in a 3 year old is in itself

questionable. It would be something that couldn't be diagnosed until school

age I heard from quite a few respected neurological doctors. My son Dakota

who is now 16 was diagnosed with ADHD and APD but it's also quite difficult

to know the difference between the two I've heard- so again questionable for

your child to be diagnosed in this one visit. Another question I have is I

understand the diagnosis of oral and verbal apraxia -but the SLP also

diagnosed the global aspect which would probably need an occupational

therapist or a neuromedical standpoint as well in my opinion. So...why did

this SLP say " maybe " to OT? I'd say almost any child with apraxia OT is a

given. This is the same SLP that diagnosed global aspects to the apraxia?

I'd say you need another eval from a neuromedical doctor. Maybe let us know

what state or country you are in so we can suggest professionals or support

sources in your area? I'm a huge believer in second opinions anyway.

And another thing is that 3 years old is not at all terribly late for a

diagnosis -don't you worry about that. But yes your child if qualified is

entitled to early intervention- again let me know if you are in the US. In

the US your child would now be in the placed in the early intervention

program through your town's school with something called an IEP. And IEP is

essentially a legal contract between the school and family for the child

that has specific goals and methods laid out. Goals can be for any time

period -short and long term, and you can have in the IEP that you meet every

____ months to go over progress and reevaluate goals. It's highly

recommended to have a professional outside the school to assist you in

overseeing goals as the school by law is only required to provide what is

appropriate where you as a parent are looking for what is best. The private

SLP will be able most times to advocate stronger for your child than the

school professional. Sometimes the school professional's hands are tied for

various reasons. I've heard this from professionals that work in the school.

So you want to see what the school system has to offer and see if it's

appropriate for your child. If it's not the school's program is not a one

size fits all as it's sometimes presented initially. The IEP stands for

individual education plan.

You say your child has about 80 words and is using several 3 to 5 word

phrases. That doesn't sound that severe to me, especially as there has not

been therapy up till now as apraxia does not self resolve. Then again we as

parents tend to overstate the speech since we understand so much more than

others. Like to me " ma ma mommy? " was a 3 word sentence for Tanner asking

" where is mommy? " Really -I counted that as a 3 word sentence. And perhaps

it was in theory -but in reality that's an apraxic 3 word sentence

So if you can provide a few examples of words and sentences.

Also I agree with Jenna about looking into The Late Talker book that I co

authored with my son's neurodevelopmental pediatrician. You can go to google

books and read some of it online for free.

So glad you started fish oils! We have had such remarkable results with

nutritional intervention with essential nutrients. here is information on

fish oils

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apra

xia-autism-and-other-communication-impairments/ and typically with fish oils

we see first results in a day to 3 weeks -norm is about a week. The other

thing to look into is NV- here are some links on that

Areas of surge for NV

http://pursuitofresearch.org/pursuit-of-research/

Why we started using this

http://pursuitofresearch.org/the-history-why-nutriiveda-for-therapeutic-use-

for-autism-apraxia-etc/

Info to share with your child's doctors

http://pursuitofresearch.org/find-a-professional/

Frequently asked questions

http://pursuitofresearch.org/products/nutriiveda/frequently_asked_questions/

Testimonials

http://pursuitofresearch.org/products/nutriiveda/nutriiveda-testimonials/

Let me know if you have any questions- and don't you worry -there is so much

hope no matter what your son's actual diagnosis is!

=====

[Guest guest]

Absolutely speech therapy is the most important therapy! I have two

daughters, now 7, both diagnosed with global apraxia, SPD, hypotonia,

auditory processing issues. One graduated all therapies last summer -- she

was non-verbal at 3, now she won't be quiet! The other daughter (they are

identical twins within a set of triplets), who was diagnosed as " Profound "

at three for global apraxia, will likely be in speech for several more

years. She is communicating her wants and needs, but is not conversational.

This disorder also really delays social development.

You need to find someone who is expert at treating apraxic children and

knows " PROMPT " . Your child may spend a lot of time just forming his sounds,

then blending sounds, etc. before he will start making clear words and

joining words into sentences. My kids also had lots of issues with word

retrieval and word sequencing. You may want him to learn some signing, PECS,

or use some kind of AAC device (like what's now available on the iPad), to

facilitate communication and keep his frustration down. My kids also needed

a lot of OT to learn how to chew and move their tongues properly.

On the positive side, daughter No. 2's first grade teacher recently asked

me, considering all her issues, how is was that my daughter started first

grade already knowing all her " phonetic blends " . That was easy -- speech

therapy for apraxia!

Best of luck to you -- I know that this is really hard. I hope that you find

the right kind of help sooner than later.

On Wed, Mar 16, 2011 at 9:59 PM, Dower <tracydower@...> wrote:

>

>

> She said he has

>

> Auditory processing disorder

> Global apraxia (mild)

> Oral apraxia (mild)

> Verbal apraxia (moderate)

> Very good receptive language

>

> She wants him to go for speech 3 times a week and also maybe OT. I'm

> relieved it's not worse than that but broken hearted that he will struggle

> his whole life. My husband and I both have APD and apraxia but we blamed it

> on his heavy college drinking and my late '90s TIAs. My sister just told me

> that I didn't talk until I was 5 and my MIL says my husband didn't talk

> until 4 and was in speech until 10. So, I guess Charlie did not dodge those

> genetic bullets.

>

> I'm grateful for this group. We started ProEFA 2 days ago. A miracle would

> be nice, but I'm also prepared to work hard for him. Does speech therapy

> really work for these conditions? I just watched the Teach Me to Talk -

> Apraxia DVD and the therapist was going all the talking while the kids

> weren't changing their behavior much, if any, in response to all her

> efforts. Don't flame me. I just need reassurance. I read that book The

> Einstein Syndrome and it's clouded my thinking. That plus my husband insists

> all his speech therapy was useless and humiliating. Please don't flame me.

>

> Charlie just turned 3. (Yes, that's terribly late for getting a diagnosis;

> I was busy having premature triplets for 18 months.) He says about 80

> different words and uses several 3-5 word phrases daily. His articulation is

> bad -- different almost every time except for overlearned words. Even those

> are missing sounds. He knows about 50 signs.

>

> Should we do in-home or in-center? Should we also do what the school system

> has to offer?

> --------------------------

> Dower

>

>