Re: Question about getting a diagnosis and our visit to the Ped's office

[Guest guest]

" Mommy Gut " is very very rarely wrong.

Get out and get private evals done NOW!!!

>

> My " mommy gut feeling " tells me that my son, , has childhood

> verbal apraxia, so I brought it up to my Ped at his 2.5 year well-

> check. I'm not sure I fully understood what she was saying, but I

> got the feeling that she didn't agree because my son also has

> other " issues " besides his speech delay. He has fixation issues,

> some sensory-motor planning problems, and has been said to have a

> cognitive delay that I'm not sure if I agree with. I'm not sure what

> the Ped's wording was, but I think she was trying to tell me that

> apraxia is a condition that exists on its own. That if he had it, he

> would comprehend most of what I'm saying but simply be unable to

> respond. It wouldn't be paired with a fixation issue or with poor

> sensory-motor skills. Does anyone have any thoughts on this?

>

>

> is almost 2.5 years old and receives speech and OT services

> through our local ISD's Early Intervention program. I was wondering

> what M.A. C.C.C. SLP stand for. I just found out that his speech

> thereapist is an MA CCC SLP and I wasn't sure if that title was

> interchangable with " speech therapist " . (I'd ask, but I don't want

> to offend her.) He sees his SLP once/week in a group setting, and

> she sometimes pulls him out of his OT/special ed preschool teacher

> group for individual help and observation. I've expressed my

> concerns regarding apraxia, however they don't diagnose through this

> program. She said she would look for signs but at this point is more

> concerned with having him try to use more words for communication and

> I think focus on his other issues as well. I realize that you have to

> first build a foundation for speech. However, I feel that he does

> comprehend at least 80% of what we're saying to him, but either can't

> or isn't trying to use words to communicate his needs. He can point

> to many objects in books when we ask him to, but doesn't usually try

> to say " juice " when he's thirsty. (But he will do the baby sign.)

> Most of his words are used for " labeling " things. He names most

> simple shapes and all the letters of the alphabet besides " W " . We

> can distinguish between them, but the average person would not be

> able to. His SLP says that it seems as if struggles to stick

> his tongue out and also, he doesn't usually lick food off of his

> lips. I'm in the process of re-reading " The Late Talker " and have

> identified 17 things abouy that I belive are characteristics of

> apraxia. At this point, should I be pushing for a diagnosis or

> should we be focusing mainly on his sensory-motor planning

> skills, " foundation for communication " and fine motor skills?

>

> Thanks for reading. I realize that I do ask a lot of " elementary

> level " questions here, but I don't know where else to look for these

> answers.

>

[Guest guest]

I relate to much of your story. At 2.5 it's a confusing mixed bag

and in my case, was told to " wait " . To some it will look like Autism

but noone wants to dx. My kid fit Apraxia and then had some Autism

traits too. And not all Dr. truly understand the Apraxia label. I

had one Dr. laugh at that label, calling it the new label du jour,

which isn't really that far off base (imo).

I waited until 3.5 - but I don't recommend that. Here's what I would

do if this were my son. Learn about and start the gluten free/casien

free diet. Sounds hard, but it's not there's a full isle at the

health food store dedicated to it. In order to do it right - it must

be done fully. I would join the gfcf group - very very

helpful. I also like the book by Souroussi - great

introduction, if you understand what you are doing, you'll better

believe in it. Give this diet 3 months at least. You can get milk

alternatives at a health food store - I chose Rice milk.

My guess is that you will see some of these " behaviors " that look

like Autism disappear. Also at this time, start the omega protocal

outlined in the book and found in details in the files. You can't

overdue the fish oils - but do make sure you research and are

comfortable with any intervention.

When I started, I ramped my boy up to 6 to 9 adult pills in one day.

He was in bad shape - and he did fine with it. But, I do suggest

ramping up. At the start of this program - I had my son evaluated by

a phd - big name st path - she dx'd apraxia. Three months later - he

didn't fit the apraxia dx anymore. All kinds of speech problems -

yes - true verbal apraxia no. She also told me not to concentrate on

biomeds - do concentrate on therapy. That advise was illogical to

little ol'dummy desperate parent me. This is one time when the rebel

in me worked to my advantage.

When I got started - the discussions on these groups may have been

written in Greek. Trust me, you will begin to " get it " - stick with

it - it means all the difference as you will find that recovery

largely depends on you. Dr.s will say one thing - and may times your

gut will say another. If that happens, you are on track. Learn to

trust your instincts.

Hope that helps - and welcome.

some web sites I recommend:

www.generationrescue.org

www.autism.com

www.autismmedia.org

www.ageofautism.com

>

> My " mommy gut feeling " tells me that my son, , has childhood

> verbal apraxia, so I brought it up to my Ped at his 2.5 year well-

> check. I'm not sure I fully understood what she was saying, but I

> got the feeling that she didn't agree because my son also has

> other " issues " besides his speech delay. He has fixation issues,

> some sensory-motor planning problems, and has been said to have a

> cognitive delay that I'm not sure if I agree with. I'm not sure

what

> the Ped's wording was, but I think she was trying to tell me that

> apraxia is a condition that exists on its own. That if he had it,

he

> would comprehend most of what I'm saying but simply be unable to

> respond. It wouldn't be paired with a fixation issue or with poor

> sensory-motor skills. Does anyone have any thoughts on this?

>

>

> is almost 2.5 years old and receives speech and OT services

> through our local ISD's Early Intervention program. I was

wondering

> what M.A. C.C.C. SLP stand for. I just found out that his speech

> thereapist is an MA CCC SLP and I wasn't sure if that title was

> interchangable with " speech therapist " . (I'd ask, but I don't want

> to offend her.) He sees his SLP once/week in a group setting, and

> she sometimes pulls him out of his OT/special ed preschool teacher

> group for individual help and observation. I've expressed my

> concerns regarding apraxia, however they don't diagnose through

this

> program. She said she would look for signs but at this point is

more

> concerned with having him try to use more words for communication

and

> I think focus on his other issues as well. I realize that you have

to

> first build a foundation for speech. However, I feel that he does

> comprehend at least 80% of what we're saying to him, but either

can't

> or isn't trying to use words to communicate his needs. He can

point

> to many objects in books when we ask him to, but doesn't usually

try

> to say " juice " when he's thirsty. (But he will do the baby sign.)

> Most of his words are used for " labeling " things. He names most

> simple shapes and all the letters of the alphabet besides " W " . We

> can distinguish between them, but the average person would not be

> able to. His SLP says that it seems as if struggles to stick

> his tongue out and also, he doesn't usually lick food off of his

> lips. I'm in the process of re-reading " The Late Talker " and have

> identified 17 things abouy that I belive are characteristics

of

> apraxia. At this point, should I be pushing for a diagnosis or

> should we be focusing mainly on his sensory-motor planning

> skills, " foundation for communication " and fine motor skills?

>

> Thanks for reading. I realize that I do ask a lot of " elementary

> level " questions here, but I don't know where else to look for

these

> answers.

>

[Guest guest]

My son is 2.5 and I faced these issues when he was two. I got a diagnosis

from my neurologist. Then I moved onto treating the entire body, not the

symptoms, and we are making great strides. He is caught up in language and

sensory has diminished significantly. We found through DAN! (Defeat Autism

Now!) Intervention that he cannot get rid of heavy metals. So we are in

detox mode.

My suggestion from this point forward is to get a diagnosis. Read the Book

THe late Talker. Try fish oil (you will find the info in the files) Get the

testing done (Info also in the files). Then go from there.

Therapy is just as important and should be done in tandem. ST should be at

least 2-3 times per week. PROMPT Therapy is important. It helped us

tremendously. OT is also important and should be done as well.

The second book I would read is by Dr. Bock, Healing the NEw

Childhood Epidemics. We love these two books on this board and they have

helped tremendously.

Good Luck,

Colleen

Mother of Charlie 2.5 years

[ ] Question about getting a diagnosis and our

visit to the Ped's office

My " mommy gut feeling " tells me that my son, , has childhood

verbal apraxia, so I brought it up to my Ped at his 2.5 year well-

check. I'm not sure I fully understood what she was saying, but I

got the feeling that she didn't agree because my son also has

other " issues " besides his speech delay. He has fixation issues,

some sensory-motor planning problems, and has been said to have a

cognitive delay that I'm not sure if I agree with. I'm not sure what

the Ped's wording was, but I think she was trying to tell me that

apraxia is a condition that exists on its own. That if he had it, he

would comprehend most of what I'm saying but simply be unable to

respond. It wouldn't be paired with a fixation issue or with poor

sensory-motor skills. Does anyone have any thoughts on this?

is almost 2.5 years old and receives speech and OT services

through our local ISD's Early Intervention program. I was wondering

what M.A. C.C.C. SLP stand for. I just found out that his speech

thereapist is an MA CCC SLP and I wasn't sure if that title was

interchangable with " speech therapist " . (I'd ask, but I don't want

to offend her.) He sees his SLP once/week in a group setting, and

she sometimes pulls him out of his OT/special ed preschool teacher

group for individual help and observation. I've expressed my

concerns regarding apraxia, however they don't diagnose through this

program. She said she would look for signs but at this point is more

concerned with having him try to use more words for communication and

I think focus on his other issues as well. I realize that you have to

first build a foundation for speech. However, I feel that he does

comprehend at least 80% of what we're saying to him, but either can't

or isn't trying to use words to communicate his needs. He can point

to many objects in books when we ask him to, but doesn't usually try

to say " juice " when he's thirsty. (But he will do the baby sign.)

Most of his words are used for " labeling " things. He names most

simple shapes and all the letters of the alphabet besides " W " . We

can distinguish between them, but the average person would not be

able to. His SLP says that it seems as if struggles to stick

his tongue out and also, he doesn't usually lick food off of his

lips. I'm in the process of re-reading " The Late Talker " and have

identified 17 things abouy that I belive are characteristics of

apraxia. At this point, should I be pushing for a diagnosis or

should we be focusing mainly on his sensory-motor planning

skills, " foundation for communication " and fine motor skills?

Thanks for reading. I realize that I do ask a lot of " elementary

level " questions here, but I don't know where else to look for these

answers.

[Guest guest]

Since you are reading The Late Talker, you will soon find answers to

many of your questions, including that apraxia often is not 'stand

alone' and that sensory-motor issues among others often accompany

it.

MA CCC SLP means she is a Speech Language Pathologist with a

Master's degree and has completed her Certificate of Clinical

Competency. In other words, she is a full-fledged Speech Therapist.

I, too, would begin your quest to get a good neurodevelopmental

evaluation performed by someone other than early intervention since

they are not willing to diagnose. For us, a correct diagnosis of

apraxia was key to getting the right kind of therapy, even when we

were doing it all privately. I wish we had begun pushing for it at

2.5 years old. I didn't learn the word apraxia until the month he

turned 3 and he was 3.5 before we got our diagnosis of severe

apraxia. From what you describe, you are in the right place and on

the right track.

Always trust your instinct and don't let anyone tell you something

that you know isn't true about your child. You know him best!

>

> My " mommy gut feeling " tells me that my son, , has childhood

> verbal apraxia, so I brought it up to my Ped at his 2.5 year well-

> check. I'm not sure I fully understood what she was saying, but I

> got the feeling that she didn't agree because my son also has

> other " issues " besides his speech delay. He has fixation issues,

> some sensory-motor planning problems, and has been said to have a

> cognitive delay that I'm not sure if I agree with. I'm not sure

what

> the Ped's wording was, but I think she was trying to tell me that

> apraxia is a condition that exists on its own. That if he had it,

he

> would comprehend most of what I'm saying but simply be unable to

> respond. It wouldn't be paired with a fixation issue or with poor

> sensory-motor skills. Does anyone have any thoughts on this?

>

>

> is almost 2.5 years old and receives speech and OT services

> through our local ISD's Early Intervention program. I was

wondering

> what M.A. C.C.C. SLP stand for. I just found out that his speech

> thereapist is an MA CCC SLP and I wasn't sure if that title was

> interchangable with " speech therapist " . (I'd ask, but I don't

want

> to offend her.) He sees his SLP once/week in a group setting, and

> she sometimes pulls him out of his OT/special ed preschool teacher

> group for individual help and observation. I've expressed my

> concerns regarding apraxia, however they don't diagnose through

this

> program. She said she would look for signs but at this point is

more

> concerned with having him try to use more words for communication

and

> I think focus on his other issues as well. I realize that you have

to

> first build a foundation for speech. However, I feel that he does

> comprehend at least 80% of what we're saying to him, but either

can't

> or isn't trying to use words to communicate his needs. He can

point

> to many objects in books when we ask him to, but doesn't usually

try

> to say " juice " when he's thirsty. (But he will do the baby sign.)

> Most of his words are used for " labeling " things. He names most

> simple shapes and all the letters of the alphabet besides " W " . We

> can distinguish between them, but the average person would not be

> able to. His SLP says that it seems as if struggles to stick

> his tongue out and also, he doesn't usually lick food off of his

> lips. I'm in the process of re-reading " The Late Talker " and have

> identified 17 things abouy that I belive are characteristics

of

> apraxia. At this point, should I be pushing for a diagnosis or

> should we be focusing mainly on his sensory-motor planning

> skills, " foundation for communication " and fine motor skills?

>

> Thanks for reading. I realize that I do ask a lot of " elementary

> level " questions here, but I don't know where else to look for

these

> answers.

>

[Guest guest]

I'm not sure why Apraxia has to exist in a vaccum to the exclusion of

other issues. I'm quite sure many kids have apraxia combined with

other issues. Have you asked your pediatrician to be referred to a

specialist for further evaluation? I would recommend seeing a

developmental pediatrician or developmental psychologist if indeed

there are OCD, sensory, cognitive, and motor planning issues. I

would hope that you could get any further referrals that you might

need for other evaluations. You may need to incorporate some

additional therapies if indeed those are issues.

>

> My " mommy gut feeling " tells me that my son, , has childhood

> verbal apraxia, so I brought it up to my Ped at his 2.5 year well-

> check. I'm not sure I fully understood what she was saying, but I

> got the feeling that she didn't agree because my son also has

> other " issues " besides his speech delay. He has fixation issues,

> some sensory-motor planning problems, and has been said to have a

> cognitive delay that I'm not sure if I agree with. I'm not sure

what

> the Ped's wording was, but I think she was trying to tell me that

> apraxia is a condition that exists on its own. That if he had it,

he

> would comprehend most of what I'm saying but simply be unable to

> respond. It wouldn't be paired with a fixation issue or with poor

> sensory-motor skills. Does anyone have any thoughts on this?

>

>

> is almost 2.5 years old and receives speech and OT services

> through our local ISD's Early Intervention program. I was

wondering

> what M.A. C.C.C. SLP stand for. I just found out that his speech

> thereapist is an MA CCC SLP and I wasn't sure if that title was

> interchangable with " speech therapist " . (I'd ask, but I don't want

> to offend her.) He sees his SLP once/week in a group setting, and

> she sometimes pulls him out of his OT/special ed preschool teacher

> group for individual help and observation. I've expressed my

> concerns regarding apraxia, however they don't diagnose through

this

> program. She said she would look for signs but at this point is

more

> concerned with having him try to use more words for communication

and

> I think focus on his other issues as well. I realize that you have

to

> first build a foundation for speech. However, I feel that he does

> comprehend at least 80% of what we're saying to him, but either

can't

> or isn't trying to use words to communicate his needs. He can

point

> to many objects in books when we ask him to, but doesn't usually

try

> to say " juice " when he's thirsty. (But he will do the baby sign.)

> Most of his words are used for " labeling " things. He names most

> simple shapes and all the letters of the alphabet besides " W " . We

> can distinguish between them, but the average person would not be

> able to. His SLP says that it seems as if struggles to stick

> his tongue out and also, he doesn't usually lick food off of his

> lips. I'm in the process of re-reading " The Late Talker " and have

> identified 17 things abouy that I belive are characteristics

of

> apraxia. At this point, should I be pushing for a diagnosis or

> should we be focusing mainly on his sensory-motor planning

> skills, " foundation for communication " and fine motor skills?

>

> Thanks for reading. I realize that I do ask a lot of " elementary

> level " questions here, but I don't know where else to look for

these

> answers.

>

[Guest guest]

Trust that mommy gut!!!

What do you mean by fixation issues? Oral, visual fixation? And

what is he fixated on? Not everything is due to apraxia - some

things are just normal. (for example the terrible twos which in most

of our children happen at three for some reason!)

The following page has some advice about childhood issues and this is

for 'any' child -not just one with special needs.

http://www.handinhandparenting.org/csArticles/articles/000000/000041.htm There

are many things you can work through and teach with play -

and here's a great resource for that. After you read The Late Talker

in my list of 'must have' books for parents of a late

talker...whether suspected of apraxia or not - please get a copy of -

The New Language of Toys : Teaching Communication Skills to Children

With Special Needs : A Guide for Parents and Teachers

by Joan E. Heller and Sue Schwarts

I can tell you that due to sensory integration dysfunction (DSI) a

child will appear to be obsessed with holding a certain item for

example - and if you try to take it away they have a break down that

is best described as the sound of someone in extreme pain. Thing is

I found out that if a child has DSI the world can be a scary place.

If someone taps you on the shoulder it may be a bit harder or

softer. Their hands may be cool or warm -but it still feels like a

tap. It never hurts. For those that have DSI each time they are

touched it may feel different. What doesn't feel like pain to others

can feel like pain to them. The reason they will attach and hold a

certain item is because as long as they hold it (or whatever the DSI

issue is) it feels the same. It's a comfort. I can tell you that

with occupational therapy by one that is knowledgeable about treating

sensory integration dysfunction most learn to overcome this in the

preschool years.

My son Tanner who is " just " apraxic (both oral and verbal some in the

body -with sensory integration dysfunction and hypotonia) can be as

stubborn as a mule at times -but he's not unlike his friends, none of

them with apraxia or any other diagnosis. He's presenting to most as

a normal 11 year old. No teasing -tons of friends and he's proof

that there is so much hope for your son.

About your pediatrician -many of us found new ones after our child

was diagnosed. I know my co author of The Late Talker,

neurodevelopmental pediatrician Dr. Marilyn Agin's goal was to

educate pediatricians about all types of late talkers. It's clear

that for today's apraxic child it is a diagnosis that does 'not' stand

alone. In fact it's rare to find a child with apraxia today

who 'just' has a speech impairment. Many also have co existing

sensory issues and/or low tone for example.

I just posted the following the other day -so for those that read the

new member archive already please delete now!

Below is a new member archived message, and an " EFA 101 basics "

archived message to hopefully answer more of your

questions for now (did you read The Late Talker yet?) For updated

information on vitamin E and more - please visit the links section

here

/links

What type of apraxic like speech behaviors are you seeing that makes

you and the SLP suspect your child has apraxia vs. a simple delay in

speech? Is your child talking at all yet? At your child's age -

without speech, it's difficult to diagnose verbal apraxia -they

could " suspect " verbal apraxia and begin treatment just in case,

which wouldn't hurt your child if he ended up just having a simple

delay. Just a few questions before we could provide more accurate

answers:

Does your child have signs of oral apraxia? (for example, can he on

command smile, imitate funny faces, blow bubbles...if you put peanut

butter anywhere around his mouth can he lick it off no matter where

it is?)

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

Does your child have any neurological " soft signs " such as hypotonia

or sensory integration dysfunction?

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

Who else evaluated your child? Was it only the SLP through your

town school or was he also in Early Intervention through the state?

(birth to three) Was he evaluated by both a speech pathologist as

well as an occupational therapist? Was/were they knowledgeable

about apraxia? (If your child wasn't diagnosed by an occupational

therapist as well and professionals suspect apraxia -I highly

recommend you request that too either through both the school as

well as private through insurance for many reasons)

To answer any questions you may have about taking your child to see a

neurodevelopmental MD if he has not yet been to one and apraxia is

suspected... in one word - " Yes!!! " I would have your child diagnosed

(private) by a neurodevelopmental medical doctor (developmental

pediatrician or pediatric neurologist) who is knowledgeable about

apraxia and other neurologically based multi-faceted communication

impairments for numerous reasons. Reasons include (but not limited

to)

*having a " hero " on the outside of the school who can assist in a

therapeutic plan and oversee your child's development over the years

*advocacy support with the insurance company

* ruling out or confirming any neurological soft signs or any other

reasons for the delay in speech

*help those that ask " why isn't he talking yet " understand this is a

medical condition -and has nothing to do with your child's cognitive

ability. (if in your child's case it doesn't. Apraxia in itself

does not affect a child's cognitive ability -and speaking early or

late is no indication of a child's intelligence. Also contrary to

popular belief -most who have speech impairments have average to

above average intelligence)

Here's an article written by Neurodevelopmental Pediatrician Dr.

Marilyn Agin that was featured as a cover article in Contemporary

Pediatrics -a trade magazine for hundreds of thousands of pediatric

medical professionals across the US. (I wrote the parent guide)

" The " late talker " -when silence isn't golden

Not all children with delayed speech are " little Einsteins " or garden

variety " late bloomers. " Some have a speech-language disorder that

will persist unless warning signs are recognized and intervention

comes early. Includes a Guide for Parents. "

Cover feature article by Late Talker co-author Marilyn Agin MD

http://www.contemporarypediatrics.com/contpeds/article/articleDetail.jsp?id=1327\

20

Parent guide of article by Late Talker co-author

[Guest guest]

Apraxia is so much easier to diagnose in hindsight, once a child has

more speech to analyze. Apraxia is a motor planning disorder, so

having motor planning issues would be more evidence of apraxia, not

less. Sometimes apraxia is global -- often called " global dyspraxia " --

which is when it affects fine and/or gross motor skills in addition to

the oral motor skills. SLP's do not diagnose apraxia since it is a

neurological condition, but they can treat a child as if he has

apraxia. The therapy for apraxia is quite effective for other speech

disorders as well.

And apraxia sometimes stands alone, but is often comorbid with other

developmental issues. Our son has/had global dyspraxia, mild

hypotonia, and some auditory processing issues. He also has food

intolerances that affected his GI system and some aspects of his

development.

in NJ

[Guest guest]

Re: Apraxia is so much easier to diagnose in hindsight, once a child

has more speech to analyze.

Precisely where we are. I am delighted he is talking yet waiting for

the other shoe to drop.

You have said once the speech came in you saw other issues. Were they

nonspeech-related? If so what were they?

>

> Apraxia is so much easier to diagnose in hindsight, once a child

has

> more speech to analyze. Apraxia is a motor planning disorder, so

> having motor planning issues would be more evidence of apraxia, not

> less. Sometimes apraxia is global -- often called " global

dyspraxia " --

> which is when it affects fine and/or gross motor skills in

addition to

> the oral motor skills. SLP's do not diagnose apraxia since it is a

> neurological condition, but they can treat a child as if he has

> apraxia. The therapy for apraxia is quite effective for other

speech

> disorders as well.

>

> And apraxia sometimes stands alone, but is often comorbid with

other

> developmental issues. Our son has/had global dyspraxia, mild

> hypotonia, and some auditory processing issues. He also has food

> intolerances that affected his GI system and some aspects of his

> development.

>

> in NJ

>

[Guest guest]

Why are you waiting for the other shoe to drop? If he's talking and

he's not diagnosed with anything -perhaps he 'was' just a late

talker! That's a good thing!!! As Bill Maher said the other night

on his show " I'm still wearing the blue underwear and I still don't

have cancer " to prove the point that just because you do so much

stuff and your child is fine doesn't mean it's because of the stuff

you do. Perhaps...just perhaps you don't have to do anything but take

your kid to the zoo.

=====

[Guest guest]

He is talking but has wierd stuff speechwise. The sad faces of the

therapists at the thought of his patchwork progress when they thought

at first he was a simple case show them waiting as well. We have to

heal his gut to see if that is all that is left on the speech end. He

turns blue at times and we cannot figure that out. Thankfully that

last happened in Oct. I don't think anything horrific is going on. I

also know he was not simply a late talker as he lost words, twice:

once after a round of 6 shots in three months in preparation for EI

and once after surgery that was actually supposed to help speech. He

is a comeback kid for sure and in the longrun I know he will be fine

but right now, what I am doing, as nuts as it may seem to some, is

warranted. I assure you I have better things to do than make up

problems. Life is too short for that.

>

> Why are you waiting for the other shoe to drop? If he's talking and

> he's not diagnosed with anything -perhaps he 'was' just a late

> talker! That's a good thing!!! As Bill Maher said the other night

> on his show " I'm still wearing the blue underwear and I still don't

> have cancer " to prove the point that just because you do so much

> stuff and your child is fine doesn't mean it's because of the stuff

> you do. Perhaps...just perhaps you don't have to do anything but

take

> your kid to the zoo.

>

> =====

>

[Guest guest]

First of all, thank you so much for all this valuable information. I

really appreciate all who have taken the time to read and respond.

For the longest time, I've been feeling disregarded. Now, I have a

lot of great advice to digest here.

's fixation is mainly on things like lights and doors. His OT

says she notices a few autistic tendencies in him. Many times during

his group therapy he is " in his own world " staring up at the lights.

When we try to get his attention or re-focus him, he will point up at

the lights, smile and say " ehh! " as if he's sharing the best thing in

the world with us. Sometimes we can shift his focus, but other times

he slips into the " Zone " and it is very difficult. For example,

yesterday he was playing with his toy piggy bank, dropping the large,

colorful plastic toy coins into the slot. The pig makes music and/or

counts when you do this. I was trying to make our play more

interactive by asking him to put certain colors in. (When asked, he

can identify colors correctly by pointing.) I kept saying " piggy

wants red! " He totally tuned me out. I eve n went so far as to

cover the coin slot and tell him " piggy doesn't want orange, he wants

red. " threw a fit and pushed my hand off of the bank so he

could keep putting the coins in over and over and over again. I

tried to put my face in his field of vision but he totally avoided

me. In that instance, he reminded me of a child with autism. (I

doubt it's related to apraxia, but read somewhere that many children

with apraxia have autistic tendencies.) I think he noramlly loves

interaction and thrives on it.

Our SLP has said that she understands why I would be concerned about

apraxia because seems to struggle to stick his tongue out.

However, I think she wants to focus more on his lack of using words

in order to communicate needs. He is almost 2.5 years old and says

less than 20 words. I believe he comprehends most of what I say, but

I could just be interpreting his needs and responding the way a mommy

would. His SLP had trouble getting him to lick a sucker outside of

his mouth. I find that if I put a little yogurt above his lip he

will not try to lick it off. Instead he will stick his tongue in and

out of his mouth (like a lizard) until gravity takes over and it

slides down and lands on his tongue. Other symptoms I've noticed

that are causing me to suspect apraxia or dyspraxia are as follows.

- He can easily say consonant sounds that only require him to use the

front of his mouth, but struggles with the ones that I believe

require you to use the back of the mouth and tongue, (y, g, l )

- He has no 2 syllable words, except those that repeat (yo-yo, zig-

zag = ziz-zay)

- He has trouble drinking from a regular straw

- When I blow air at his face, he tries to imitate the shape of my

mouth, but struggles to get air out.

- He has sensory-motor planning issues and difficulty immitating

gestures, signs, etc.

- He has poor balance and doesn't often notice people or obstacles in

his path

- He seldom takes bites of food, generally shoving large amounts into

his mouth (an entire piece of bread if you let him). The only

exception is with bananas.

- He can recognize and correctly point out all the letters of the

alphabet. When asked to identify them, many sound the same. (C, Z)

(T, D, E) (A, X) (R, O) We can distinguish, but the average person

would not be able to.

He smiles a lot and will sometimes try to imitate funny faces, mainly

with his eyes though. At first, I didn't peg him as a child with

oral apraxia, but I could be wrong. He might seem to have a few DSI

tendencies, but they're not overpowering. I know what I need to do

is have him evaluated, but I feel sometimes as if the doctors are not

really " hearing " my concerns. So far, he has been evaluated through

our state's EI program through our county's Intermediate School

District. He was evaluated by a psychologist, audiologist, and SLP

initially, to determine if he qualified for services. This was back

in July/Aug. In November, we saw a pediatric neurologist

who " assessed " him as having a " developmental language disorder

affecting expressive and, to a lesser degree, receptive language. "

At that point, I was concerned about autism, however the neurologist

didn't believe he showed enough symptoms to warrant further testing.

I asked him about apraxia, but he didn't seem concerned. He

explained apraxia as the " inability to perform a certain movement "

and honestly I wasn't sure if we were on the same page. Currently,

he has group therapy sessins through our EI program twice/week. One

day he is seen by an OT in a group setting. There is also a special

ed. preschool teacher working with us. The other day, he works with

an SLP along with his preschool teacher. The SLP has been pulling

him from the OT group if she can for some one-on-one. She agreed to

look for symptoms of apraxia. This began once I mentioned my

concerns about apraxia to her and after I had a conversation with his

OT. I'm not sure how familiar the OT is with apraxia, but she did

seem to understand my concerns.

I realize that I am accountable for all decisions regarding 's

therapy. It seems as though the EI team members believe we need to

focus on his non-verbal skills, on building his vocabulary, and

breaking through his fixation before we can think about the quality

of his verbal speech. That sounds fair enough. I'm just completely

freaked out by the " early " part of " early intervention " and want to

do it all ASAP! Maybe at this age and stage of his development it is

better not to push for a diagnosis. The team is truly doing what

they feel is best to service his needs. I give them credit because

he has made huge strides in terms of non-verbal communication,

signing, eye-contact, gestures, etc. I just want to make sure that

we are doing all we can at this point.

Again, thank you so much for taking the time to reply. Everyone! I

am so gratful this group exists. All the ladies (and men if there

are any) are so knowledgeable and it's just so comforting at this

stage of our journey. Thank you! Thank you!

>

> Trust that mommy gut!!!

>

> What do you mean by fixation issues? Oral, visual fixation? And

> what is he fixated on? Not everything is due to apraxia - some

> things are just normal. (for example the terrible twos which in

most

> of our children happen at three for some reason!)

>

> The following page has some advice about childhood issues and this

is

> for 'any' child -not just one with special needs.

>

http://www.handinhandparenting.org/csArticles/articles/000000/000041.h

tm There are many things you can work through and teach with play -

> and here's a great resource for that. After you read The Late

Talker

> in my list of 'must have' books for parents of a late

> talker...whether suspected of apraxia or not - please get a copy

of -

> The New Language of Toys : Teaching Communication Skills to Children

> With Special Needs : A Guide for Parents and Teachers

> by Joan E. Heller and Sue Schwarts

>

> I can tell you that due to sensory integration dysfunction (DSI) a

> child will appear to be obsessed with holding a certain item for

> example - and if you try to take it away they have a break down that

> is best described as the sound of someone in extreme pain. Thing is

> I found out that if a child has DSI the world can be a scary place.

> If someone taps you on the shoulder it may be a bit harder or

> softer. Their hands may be cool or warm -but it still feels like a

> tap. It never hurts. For those that have DSI each time they are

> touched it may feel different. What doesn't feel like pain to

others

> can feel like pain to them. The reason they will attach and hold a

> certain item is because as long as they hold it (or whatever the DSI

> issue is) it feels the same. It's a comfort. I can tell you that

> with occupational therapy by one that is knowledgeable about

treating

> sensory integration dysfunction most learn to overcome this in the

> preschool years.

>

> My son Tanner who is " just " apraxic (both oral and verbal some in

the

> body -with sensory integration dysfunction and hypotonia) can be as

> stubborn as a mule at times -but he's not unlike his friends, none

of

> them with apraxia or any other diagnosis. He's presenting to most

as

> a normal 11 year old. No teasing -tons of friends and he's proof

> that there is so much hope for your son.

>

> About your pediatrician -many of us found new ones after our child

> was diagnosed. I know my co author of The Late Talker,

> neurodevelopmental pediatrician Dr. Marilyn Agin's goal was to

> educate pediatricians about all types of late talkers. It's clear

> that for today's apraxic child it is a diagnosis that does 'not'

stand

> alone. In fact it's rare to find a child with apraxia today

> who 'just' has a speech impairment. Many also have co existing

> sensory issues and/or low tone for example.

>

> I just posted the following the other day -so for those that read

the

> new member archive already please delete now!

>

> Below is a new member archived message, and an " EFA 101 basics "

> archived message to hopefully answer more of your

> questions for now (did you read The Late Talker yet?) For updated

> information on vitamin E and more - please visit the links section

> here

> /links

>

> What type of apraxic like speech behaviors are you seeing that makes

> you and the SLP suspect your child has apraxia vs. a simple delay in

> speech? Is your child talking at all yet? At your child's age -

> without speech, it's difficult to diagnose verbal apraxia -they

> could " suspect " verbal apraxia and begin treatment just in case,

> which wouldn't hurt your child if he ended up just having a simple

> delay. Just a few questions before we could provide more accurate

> answers:

>

> Does your child have signs of oral apraxia? (for example, can he on

> command smile, imitate funny faces, blow bubbles...if you put peanut

> butter anywhere around his mouth can he lick it off no matter where

> it is?)

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

>

> Does your child have any neurological " soft signs " such as hypotonia

> or sensory integration dysfunction?

>

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsig

ns.html

>

> Who else evaluated your child? Was it only the SLP through your

> town school or was he also in Early Intervention through the state?

> (birth to three) Was he evaluated by both a speech pathologist as

> well as an occupational therapist? Was/were they knowledgeable

> about apraxia? (If your child wasn't diagnosed by an occupational

> therapist as well and professionals suspect apraxia -I highly

> recommend you request that too either through both the school as

> well as private through insurance for many reasons)

>

> To answer any questions you may have about taking your child to see

a

> neurodevelopmental MD if he has not yet been to one and apraxia is

> suspected... in one word - " Yes!!! " I would have your child diagnosed

> (private) by a neurodevelopmental medical doctor (developmental

> pediatrician or pediatric neurologist) who is knowledgeable about

> apraxia and other neurologically based multi-faceted communication

> impairments for numerous reasons. Reasons include (but not limited

> to)

>

> *having a " hero " on the outside of the school who can assist in a

> therapeutic plan and oversee your child's development over the years

> *advocacy support with the insurance company

> * ruling out or confirming any neurological soft signs or any other

> reasons for the delay in speech

> *help those that ask " why isn't he talking yet " understand this is a

> medical condition -and has nothing to do with your child's cognitive

> ability. (if in your child's case it doesn't. Apraxia in itself

> does not affect a child's cognitive ability -and speaking early or

> late is no indication of a child's intelligence. Also contrary to

> popular belief -most who have speech impairments have average to

> above average intelligence)

>

> Here's an article written by Neurodevelopmental Pediatrician Dr.

> Marilyn Agin that was featured as a cover article in Contemporary

> Pediatrics -a trade magazine for hundreds of thousands of pediatric

> medical professionals across the US. (I wrote the parent guide)

>

> " The " late talker " -when silence isn't golden

> Not all children with delayed speech are " little Einsteins " or

garden

> variety " late bloomers. " Some have a speech-language disorder that

> will persist unless warning signs are recognized and intervention

> comes early. Includes a Guide for Parents. "

>

> Cover feature article by Late Talker co-author Marilyn Agin MD

>

http://www.contemporarypediatrics.com/contpeds/article/articleDetail.j

sp?id=132720

> Parent guide of article by Late Talker co-author

[Guest guest]

That is exactly what I thought! If it is a motor planning disorder,

then why wouldn't his motor planning issues be potential evidence of

it? Thank you so much! I guess my dilema is whether or not to wait

until more speech developes.

>

> Apraxia is so much easier to diagnose in hindsight, once a child

has

> more speech to analyze. Apraxia is a motor planning disorder, so

> having motor planning issues would be more evidence of apraxia, not

> less. Sometimes apraxia is global -- often called " global

dyspraxia " --

> which is when it affects fine and/or gross motor skills in

addition to

> the oral motor skills. SLP's do not diagnose apraxia since it is a

> neurological condition, but they can treat a child as if he has

> apraxia. The therapy for apraxia is quite effective for other

speech

> disorders as well.

>

> And apraxia sometimes stands alone, but is often comorbid with

other

> developmental issues. Our son has/had global dyspraxia, mild

> hypotonia, and some auditory processing issues. He also has food

> intolerances that affected his GI system and some aspects of his

> development.

>

> in NJ

>

[Guest guest]

Thank you. We say a neurologist and he didn't seem to concerned

about apraxia. I didn't get the feeling we were on the same page

about it, but who am I to question a neurologist? Thank you for the

resources also!

>

> My son is 2.5 and I faced these issues when he was two. I got a

diagnosis

> from my neurologist. Then I moved onto treating the entire body,

not the

> symptoms, and we are making great strides. He is caught up in

language and

> sensory has diminished significantly. We found through DAN! (Defeat

Autism

> Now!) Intervention that he cannot get rid of heavy metals. So we

are in

> detox mode.

>

> My suggestion from this point forward is to get a diagnosis. Read

the Book

> THe late Talker. Try fish oil (you will find the info in the files)

Get the

> testing done (Info also in the files). Then go from there.

>

> Therapy is just as important and should be done in tandem. ST

should be at

> least 2-3 times per week. PROMPT Therapy is important. It helped us

> tremendously. OT is also important and should be done as well.

>

> The second book I would read is by Dr. Bock, Healing the NEw

> Childhood Epidemics. We love these two books on this board and they

have

> helped tremendously.

>

> Good Luck,

>

> Colleen

>

> Mother of Charlie 2.5 years

>

> [ ] Question about getting a diagnosis

and our

> visit to the Ped's office

>

>

>

> My " mommy gut feeling " tells me that my son, , has childhood

> verbal apraxia, so I brought it up to my Ped at his 2.5 year well-

> check. I'm not sure I fully understood what she was saying, but I

> got the feeling that she didn't agree because my son also has

> other " issues " besides his speech delay. He has fixation issues,

> some sensory-motor planning problems, and has been said to have a

> cognitive delay that I'm not sure if I agree with. I'm not sure

what

> the Ped's wording was, but I think she was trying to tell me that

> apraxia is a condition that exists on its own. That if he had it,

he

> would comprehend most of what I'm saying but simply be unable to

> respond. It wouldn't be paired with a fixation issue or with poor

> sensory-motor skills. Does anyone have any thoughts on this?

>

> is almost 2.5 years old and receives speech and OT services

> through our local ISD's Early Intervention program. I was wondering

> what M.A. C.C.C. SLP stand for. I just found out that his speech

> thereapist is an MA CCC SLP and I wasn't sure if that title was

> interchangable with " speech therapist " . (I'd ask, but I don't want

> to offend her.) He sees his SLP once/week in a group setting, and

> she sometimes pulls him out of his OT/special ed preschool teacher

> group for individual help and observation. I've expressed my

> concerns regarding apraxia, however they don't diagnose through

this

> program. She said she would look for signs but at this point is

more

> concerned with having him try to use more words for communication

and

> I think focus on his other issues as well. I realize that you have

to

> first build a foundation for speech. However, I feel that he does

> comprehend at least 80% of what we're saying to him, but either

can't

> or isn't trying to use words to communicate his needs. He can point

> to many objects in books when we ask him to, but doesn't usually

try

> to say " juice " when he's thirsty. (But he will do the baby sign.)

> Most of his words are used for " labeling " things. He names most

> simple shapes and all the letters of the alphabet besides " W " . We

> can distinguish between them, but the average person would not be

> able to. His SLP says that it seems as if struggles to stick

> his tongue out and also, he doesn't usually lick food off of his

> lips. I'm in the process of re-reading " The Late Talker " and have

> identified 17 things abouy that I belive are characteristics

of

> apraxia. At this point, should I be pushing for a diagnosis or

> should we be focusing mainly on his sensory-motor planning

> skills, " foundation for communication " and fine motor skills?

>

> Thanks for reading. I realize that I do ask a lot of " elementary

> level " questions here, but I don't know where else to look for

these

> answers.

>

>

>

>

>

>

>

>

[Guest guest]

Thank you so much! I also had the feeling that my doctor and

pediatric neurologist didn't really understand the apraxia diagnosis

either. Or maybe he was looking at it from a different perspective,

like the main concern wasn't the speech disorder. I don't know, but

who am I to question a neurologist?

I appreciate the resources also. You can be sure that I will look

into all of it!

> >

> > My " mommy gut feeling " tells me that my son, , has childhood

> > verbal apraxia, so I brought it up to my Ped at his 2.5 year well-

> > check. I'm not sure I fully understood what she was saying, but

I

> > got the feeling that she didn't agree because my son also has

> > other " issues " besides his speech delay. He has fixation issues,

> > some sensory-motor planning problems, and has been said to have a

> > cognitive delay that I'm not sure if I agree with. I'm not sure

> what

> > the Ped's wording was, but I think she was trying to tell me that

> > apraxia is a condition that exists on its own. That if he had

it,

> he

> > would comprehend most of what I'm saying but simply be unable to

> > respond. It wouldn't be paired with a fixation issue or with

poor

> > sensory-motor skills. Does anyone have any thoughts on this?

> >

> >

> > is almost 2.5 years old and receives speech and OT services

> > through our local ISD's Early Intervention program. I was

> wondering

> > what M.A. C.C.C. SLP stand for. I just found out that his speech

> > thereapist is an MA CCC SLP and I wasn't sure if that title was

> > interchangable with " speech therapist " . (I'd ask, but I don't

want

> > to offend her.) He sees his SLP once/week in a group setting,

and

> > she sometimes pulls him out of his OT/special ed preschool

teacher

> > group for individual help and observation. I've expressed my

> > concerns regarding apraxia, however they don't diagnose through

> this

> > program. She said she would look for signs but at this point is

> more

> > concerned with having him try to use more words for communication

> and

> > I think focus on his other issues as well. I realize that you

have

> to

> > first build a foundation for speech. However, I feel that he

does

> > comprehend at least 80% of what we're saying to him, but either

> can't

> > or isn't trying to use words to communicate his needs. He can

> point

> > to many objects in books when we ask him to, but doesn't usually

> try

> > to say " juice " when he's thirsty. (But he will do the baby

sign.)

> > Most of his words are used for " labeling " things. He names most

> > simple shapes and all the letters of the alphabet besides " W " .

We

> > can distinguish between them, but the average person would not be

> > able to. His SLP says that it seems as if struggles to

stick

> > his tongue out and also, he doesn't usually lick food off of his

> > lips. I'm in the process of re-reading " The Late Talker " and

have

> > identified 17 things abouy that I belive are characteristics

> of

> > apraxia. At this point, should I be pushing for a diagnosis or

> > should we be focusing mainly on his sensory-motor planning

> > skills, " foundation for communication " and fine motor skills?

> >

> > Thanks for reading. I realize that I do ask a lot of " elementary

> > level " questions here, but I don't know where else to look for

> these

> > answers.

> >

>

[Guest guest]

I wouldn't wait. Order the Nordic Naturals pro efa and pro epa

today. You have nothing to lose. You have enough symptoms and signs

to move forward.

Here's how I give my boy supplements. First - don't get hung up on

taste, it's not that bad and it's for his own good. I just have a

chaser ready. Buy some of those medicine syringes, the one with the

blue bulb on the end that comes off easily. Cut the tip of the

capsule - squeeze it into the meauring tube - put top back on and

squirt it into boys mouth. You can easily regulate how much goes

in. Split the dose, some in the am and some in pm - and I believe

it's best to give with food. My Dr. said given with fats ie. peanut

butter is a good idea.

This is how I give my boy all his supplements. Always works and you

know he's getting a full dose. Some try to put it in food, put it in

juice - too hard and you never know if they're getting the full dose.

Start a diary - write down everything ie.; poop, illness, new words,

connectedness, clumbsyness, social...

Good luck

> >

> > Apraxia is so much easier to diagnose in hindsight, once a child

> has

> > more speech to analyze. Apraxia is a motor planning disorder, so

> > having motor planning issues would be more evidence of apraxia,

not

> > less. Sometimes apraxia is global -- often called " global

> dyspraxia " --

> > which is when it affects fine and/or gross motor skills in

> addition to

> > the oral motor skills. SLP's do not diagnose apraxia since it is

a

> > neurological condition, but they can treat a child as if he has

> > apraxia. The therapy for apraxia is quite effective for other

> speech

> > disorders as well.

> >

> > And apraxia sometimes stands alone, but is often comorbid with

> other

> > developmental issues. Our son has/had global dyspraxia, mild

> > hypotonia, and some auditory processing issues. He also has food

> > intolerances that affected his GI system and some aspects of his

> > development.

> >

> > in NJ

> >

>

[Guest guest]

Can you get an NDP? Sometimes neurologists are not language oriented.

> >

> > My son is 2.5 and I faced these issues when he was two. I got a

> diagnosis

> > from my neurologist. Then I moved onto treating the entire body,

> not the

> > symptoms, and we are making great strides. He is caught up in

> language and

> > sensory has diminished significantly. We found through DAN!

(Defeat

> Autism

> > Now!) Intervention that he cannot get rid of heavy metals. So we

> are in

> > detox mode.

> >

> > My suggestion from this point forward is to get a diagnosis. Read

> the Book

> > THe late Talker. Try fish oil (you will find the info in the

files)

> Get the

> > testing done (Info also in the files). Then go from there.

> >

> > Therapy is just as important and should be done in tandem. ST

> should be at

> > least 2-3 times per week. PROMPT Therapy is important. It helped

us

> > tremendously. OT is also important and should be done as well.

> >

> > The second book I would read is by Dr. Bock, Healing the

NEw

> > Childhood Epidemics. We love these two books on this board and

they

> have

> > helped tremendously.

> >

> > Good Luck,

> >

> > Colleen

> >

> > Mother of Charlie 2.5 years

> >

> > [ ] Question about getting a diagnosis

> and our

> > visit to the Ped's office

> >

> >

> >

> > My " mommy gut feeling " tells me that my son, , has childhood

> > verbal apraxia, so I brought it up to my Ped at his 2.5 year well-

> > check. I'm not sure I fully understood what she was saying, but I

> > got the feeling that she didn't agree because my son also has

> > other " issues " besides his speech delay. He has fixation issues,

> > some sensory-motor planning problems, and has been said to have a

> > cognitive delay that I'm not sure if I agree with. I'm not sure

> what

> > the Ped's wording was, but I think she was trying to tell me that

> > apraxia is a condition that exists on its own. That if he had it,

> he

> > would comprehend most of what I'm saying but simply be unable to

> > respond. It wouldn't be paired with a fixation issue or with poor

> > sensory-motor skills. Does anyone have any thoughts on this?

> >

> > is almost 2.5 years old and receives speech and OT services

> > through our local ISD's Early Intervention program. I was

wondering

> > what M.A. C.C.C. SLP stand for. I just found out that his speech

> > thereapist is an MA CCC SLP and I wasn't sure if that title was

> > interchangable with " speech therapist " . (I'd ask, but I don't

want

> > to offend her.) He sees his SLP once/week in a group setting, and

> > she sometimes pulls him out of his OT/special ed preschool

teacher

> > group for individual help and observation. I've expressed my

> > concerns regarding apraxia, however they don't diagnose through

> this

> > program. She said she would look for signs but at this point is

> more

> > concerned with having him try to use more words for communication

> and

> > I think focus on his other issues as well. I realize that you

have

> to

> > first build a foundation for speech. However, I feel that he does

> > comprehend at least 80% of what we're saying to him, but either

> can't

> > or isn't trying to use words to communicate his needs. He can

point

> > to many objects in books when we ask him to, but doesn't usually

> try

> > to say " juice " when he's thirsty. (But he will do the baby sign.)

> > Most of his words are used for " labeling " things. He names most

> > simple shapes and all the letters of the alphabet besides " W " . We

> > can distinguish between them, but the average person would not be

> > able to. His SLP says that it seems as if struggles to stick

> > his tongue out and also, he doesn't usually lick food off of his

> > lips. I'm in the process of re-reading " The Late Talker " and have

> > identified 17 things abouy that I belive are characteristics

> of

> > apraxia. At this point, should I be pushing for a diagnosis or

> > should we be focusing mainly on his sensory-motor planning

> > skills, " foundation for communication " and fine motor skills?

> >

> > Thanks for reading. I realize that I do ask a lot of " elementary

> > level " questions here, but I don't know where else to look for

> these

> > answers.

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

That's so sad that you've felt disregarded as now is a time you need

more support. But after reading your message it's no wonder. It

sounds like there isn't anyone you've taken your child to who really

understands apraxia.

It's not that many children with apraxia have autistic tendencies -

but many children with apraxia have sensory integration dysfunction

which symptoms have been linked wrongly to 'just' autism -but signs

of sensory integration dysfunction are merely signs of sensory

integration dysfunction. Stuffing the mouth is another sign of

sensory issues -they stuff because they don't feel the amount of food

in the mouth.

Tanner used to zone us out too...until we provided alternative ways

of communication. So in addition to sensory issues, frustration can

also cause a child to shut down. I've posted many times how each

morning I would ask my boys what they wanted for breakfast and only

Dakota would answer. After awhile Tanner wouldn't even look at me

when I asked. As it says in The Late Talker book (if you didn't get

to this part yet) one day I made up a menu to play " restaurant "

(actually I was in Jersey at the time so I think I called

it " diner " ) but anyway I did simple pictures of eggs, oatmeal,

french toast, pancakes- and said that they had to point to what they

wanted on the menu. Tanner came to life which is the best way to put

it -he was SO excited to point to what he wanted because quite

frankly it was the first chance he had to. Of course now I had to

become a short order chef -but it was so worth it. Tanner embraced

that menu for the longest time like it was a lifeline or something.

I had to redraw it a few times because each morning Tanner would

search it out and it would get syrup on it and all from Tanner

clutching on to it and keeping it by his side while he ate breakfast.

So the million dollar question...what alternative or augmentive

communication does your child use, simple sign, picture exchange - if

any? And if he does have alternative ways to communicate does he

appear to be excited about using them?

It sounds to me like your SLP (among the others) isn't that

knowledgeable about apraxia in that if a child can't move his tongue

on command he or she will also have trouble with communication.

Working on the oral aspects of apraxia is working on speech! Try to

talk without moving your tongue -or moving it the right way. This is

also why some children in this group with apraxia who don't get

appropriate therapy end up talking with a flacid sound (for those

that don't know what that means -they sound like they are deaf...they

don't have the right movement in their tongue)

It sounds like your child should be checked by a different pediatric

neurologist or developmental pediatrician for oral apraxia as well as

verbal and for motor planning deficits in the body -known in some

parts of the world outside of the US as dyspraxia. Here in the US

apraxia and dyspraxia are used interchangeably. Your child based on

what you wrote here clearly has a number of warning signs.

Tanner also had trouble with the back of the tongue sounds like K -

but he had issues with the J sound too. I've posted a few times how

Tanner used to call my sister (Auntie ) doo doo. We all laugh

about that if it comes up -but that seems like decades ago! For the

K sound I remember we worked on that laying Tanner on his back on a

bean bag chair in Ortega's office (his SLP at the time)

Tricks to teach drinking from a straw. Cut the straw short so he has

to put his mouth very close to the liquid if using a cup...but number

one way? Get those juice boxes and squeeze the juice box so the

liquid comes up and work on not squeezing as much over time. That's

the most awesome way. Also I just posted a long message on horn and

straw therapy written by Sara -did you see that?

The diagnosis you received from the neurologist I'd have him clarify

what he means by receptive delay -or better yet based on his lack of

picking up some other things - let us know where you are from and

perhaps some of the members can suggest neuroMDs they are thrilled

with who helps that child get the services they need early. (they

call it early intervention for a reason) It's hard enough to asses a

receptive delay in a speech impaired teen or adult -no less a

preschool child. You need professionals that understand your

child's impairments because speech and receptive ability don't go

hand in hand. When the neurologist you saw said apraxia is

the " inability to perform a certain movement " did he add the key

words to complete the definition...on command? Those with apraxia at

times can move their tongue or say a word...just can't always do it

when they want. In fact the more they want to do something the less

likely they can -and each time they try may be different. This by

the way is another reason why ABA therapy is not appropriate and can

be detrimental to a child with apraxia who does not have autism. The

goal is to help by therapy and teaching -not to frustrate even more!

So don't be too quick to let others say autism unless it is. And

then if he is make sure the therapist does modified ABA.

Based on your email I'm taking it that you are not from New Jersey as

none of the professionals you've worked with seem to have noticed

what appears to be blaring early warning signs of apraxia and sensory

issues. Are there any other parents around you that you know have

children with the same issues? What state are you in?

For me personally I only took Tanner to pediatric neurologists and

developmental pediatricians for evaluations as I myself never viewed

Tanner's issues as psychological so why take him to a psychologist

was my thinking. I used my evaluations to help us advocate any time

the school at that time did something that was not appropriate.

Guess this message is all over the place but tried to answer all of

your concerns. Hope it helped a bit more and don't hesitate to

continue to ask!

Below as promised are three messages about sensory breakdowns -

including a time someone on an elevator thought I was hitting Tanner

or something based on how he was crying (and nonverbal at the time!!)

Re: Belly Button & Apraxia?

Tue Oct 22, 2002 6:04 pm

Hi Ann and welcome to the group!

Most children with apraxia have one or more mild neurological " soft

signs " such as sensory integration dysfunction, hypotonia (low

tone), and/or motor problems in other parts of the body. Only a

rare apraxic child has no other issues - is one of them

http://www.debtsmart.com/talk

Sometimes it's hard for us as parents or for a typical pediatrician

to pick up the subtle soft signs when the child is really young.

And yes -most apraxic children when really young look like any other

child. They are usually seen as " just a late talker " The apraxia,

hypotonia, DSI and motor problems of the body if any or all of them

are present - tend to become a bit more obvious as the child grows

older and more and more is expected of them. Sadly however -a

child's brain has the best chance to rewire in the early years -

while most parents are waiting for their child to " just start

talking " without providing any of the therapies that could possibly

help give the child a better chance.

Have you taken your child to a neurodevelopmental doctor for an

evaluation yet? They are great at picking up these types of things -

and can help in advocating to provide your child with additional

Occupational Therapy services through Early Intervention or the

school system to help.

I'm not an OT or an MD -but as a parent who's child had DSI and also

did strange

things -not fascination with his belly button like your daughter -

but sensory things like holding small items for hours and screaming

(with his eyes bugged out and like he was in pain) if anyone tried

to take them out of his hand, and screaming in pain if you patted

his head or tried to tickly him -but not crying a bit when getting a

shot -or when he got a boo boo -sounds like your daughter also has

some type of sensory integration dysfunction and her body is for

whatever reason craving more stimulation. Tanner had to

be " brushed " , had vibrators held to his face -and he did all types

of sensory activities to help. (in addition to all the speech

therapy of course!)

Here are some great pages of information on sensory integration

dysfunction from Speechville.com:

http://www.speech-express.com/associated-disabilities/sensory-

integration.html

http://www.speech-express.com/occupational-therapy/links.html

With proper therapy and early intervention -DSI is another thing

that your child can learn to overcome! Tanner's is hardly

noticeable at all anymore -but when we didn't know about it and

before treatment -it was horrible!!!

Wed Nov 13, 2002 10:19 pm

Re: getting up to speed

Hi !

Other than not talking yet -you can look for any neuro

" soft signs " even before the trip to the neurodevelopmental doctor -

and yes, that's excellent you are going to take him there! Without

the soft signs -it's harder to diagnose a nonverbal two year old -

which doesn't mean you can't start appropriate therapy just in case

if apraxia is suspected -can't hurt and will probably help no matter

what the reason. Even a two year old with " just " a simple delay in

speech can be mentally stimulated to talk sooner while having fun

with some early intervention speech therapy that may look lots like

play to the untrained eye. A big question is did he ever have

sounds that he lost -did he ever regress?

A neurodevelopmental medical exam will look at a number of things in

your son outside of communication skills, or receptive and

expressive language -including physical development and motor

skills, thinking and learning cognitive development etc.

Soft signs in apraxic children are typically mild -but in most cases

there -most of us just didn't know what they were because up to

CHERAB nobody pointed them out. I try to raise awareness because if

your child has any of the following -as a parent you will know once

pointed

out-and

so will the neuro MD you bring your child to.

When you run a large support group -you tend to see what is

happening in a group -so support groups are excellent for really

getting to the facts and the " norm " -and I'll get to the EFA question

in that

regard too. I try to put the neuro soft signs in a way that

everyone will understand -and these soft signs are all based on my

son Tanner -who I and everyone including his first pediatric group

all thought was a normal baby other than he was just a late talker.

This same child showed all the strong warning signs -we just didn't

know -however -all the soft signs were picked up right away by all

the neurodevelopmental MD's Tanner has seen once I insisted on taking

him (his

regular pediatrician wanted to wait till three) -as well as by the

PTs,

OTs and SLPs too. I could now kick myself that I didn't see them

then -but how would I know? That's why I want to let all of you

know -to prevent it from ever happening to another, and so children

could be get into therapy younger and have a great chance for

success.

Here are some quick parent friendly signs of oral apraxia:

If you put peanut butter on his lips can he lick it off or does he

use his fingers? Did he blow out the candles on his birthday cake

when he turned two? Can he imitate funny faces? If you take his

picture and say " smile " does he smile?

Here are some quick parent friendly signs of mild hypotonia:

A child with hypotonia will feel heavier than a child of the same

weight without hypotonia (kind of like the difference between

picking up your child when he's fast asleep vs. awake) Does he

appear to tire faster than other kids his age walking in the mall

etc.? Will you and your wife not dream of taking him anywhere

without the stroller because you know if you don't you will be stuck

carrying him and if you don't pick him up he will sit on the floor

crying with his arms in the air for you to pick him up again? When

you pick him off the floor -it's not as easy as it looks for you -or

others that try! Most will say " wow he's solid! " when picking him

up. His body may look like a cherab -rounded and soft, and if more

severe the child may look a bit like a rag doll -gravity just pulls

them down.

Here are some quick parent friendly signs of sensory integration

dysfunction:

This is tough because it can affect any of the senses -touch, sight,

hearing, motion, etc. So in a nutshell -Your child will seem to be

bothered by something that others aren't and will not be bothered by

something most are if that makes sense.

Here are some of my son's signs that boy do I wish I knew this is

what he had when he was screaming and people were looking at me

like " what are you doing to that poor child "

Your child may insist on a certain color cup each time -and will

throw a fit if it's any other. My son for would carry a small cap

from a pen or some other small strange object around for hours -and

if you tried to open his clutched hand - he would freak out -even if

you thought he was asleep and tried to take the pen cap away so he

wouldn't choke on it while he was sleeping -he would wake up and

freak out if he wasn't 100% asleep yet. He wouldn't cry for shots -

but would say " oww " and cringe if you patted his head or tickled his

arm. When Tanner was a baby (after the fevers and regression) his

screams when I brought him to public places like the store would

sound like high pitched extreme pain screams and he would stiffen

his body -his eyes would bulge out -and he would do this just once

in a while (Thank God) but when he did -he would cry till he fell

asleep in a sweat -with nobody being able to figure out what was

wrong (my Aunt has her PhD in nursing and my sister is a

professional nanny -nobody had a clue) Just strange stuff that

seemed quirky. DSI can also be the child that throws a tantrum like

he's in pain -while you have no clue what he's crying about. Why

DSI happens to a nonverbal child who is too young to let us know is

a cruel joke -so it's important for us to know if this is what your

child has. The Out of Sync Child is one of the books most of us buy

when our child is diagnosed with any multi faceted neurologically

based communication disorder like apraxia.

Here are some quick parent friendly signs of motor planning problems

in the body:

Just like with speech -your child may be able to do something once

and then appear not to remember how to do it again. His actions

look forced or planned -he's slower because you can see he's

thinking before each movement. His development is a bit off in that

he can do many things advanced -but for some reason can't seem to do

certain simple things that a much younger child even should be able

to do. Again -just doesn't make sense.

Then you have to know if movement problems are from weakness

(hypotonia) or motor planning (apraxia/dyspraxia) -just like with

speech. Again -it could be a bit of both -and again -both are

neurologically based.

As far as EFAs. If you have a local support group I highly suggest

you go. Most people that post here will post if they have really

good or really bad results. You'll find out the " norm " either right

away at support groups -or over time on grouplists. So much faster

at local groups you will find that not all children on too high a

level of EFAs will have tantrums -you will find that there are

actually quite a few children on higher levels -and doing great.

You also won't find high levels of EFAs cause tantrums in research

that's been done yet on PUFAs. Not to say it doesn't happen -it's

just not the norm. In most cases actually -tantrums come when the

EFA dosage is lowered. In your child's case -one week is way to

soon to know however. As a parent right now -all you know is you

believe there is a sign of both good and bad. Unless you stop the

Efalex -you won't know if the tantrums and the new sounds are from

the Efalex -or just a coincidence.

Efalex is the formula my son Tanner started on and you can read his

story here http://www.drstordy.com/stories.html I believe the

ProEFA is better because there is higher EPA in the formula -where

Efalex -even though it's also an Omega 3 and Omega 6 formula has

very little EPA. Most of our children that were on Efalex when

switched to a lower dosage of ProEFA had a surge -but if we lowered

the dosage of Efalex -ooooohhhh -nightmare tantrums! Either way -

again -your son has only been on it for a week -and it sounds good

so far about the increase in sounds -right on target to what most of

us see. You should hear the first word in the next week or two -and

then attempts at two word sentences within 2 to 3 months if your

child is apraxic.

One other thing however to keep in mind-since you will be seeing the

neurodevelopmental doctor after starting Efalex -he may not pick up

the apraxia or the soft signs -you may want to stop the Efalex until

after the evaluation -and then start again. An apraxic child on

Efalex will still require therapy -SLP and OT etc. however -they

don't present as severe and for insurance reasons -it's best to have

the evaluations before the EFAs. It's up to you. And also -if you

stop -you can see if the positive and negative signs stop too -and

see if they come back when you put him on again.

About your other thought. Why do you suspect ADHD besides the stiff

joints anyway? I have a child with ADHD and know nothing (and up to

you have heard nothing) about stiff joints being a sign of ADHD -my

son Dakota is so far from that actually -he looks more like a monkey

the way he climbs and jumps off trees and sides of buildings etc.

I'm sure one or more of the developmental pediatricians will have a

comment on that.

Re: Need some suggestions

Fri Jun 6, 2003 10:11 am

Hi Suzi!

I completely relate to what you went through -I had posted a few

years back (in the archives somewhere) a similar incident with Tanner

on an

elevator when he was three and

nonverbal. He was having a meltdown and was screaming crying (like

someone was sticking pins in him as all of you with DSI kids know

too well) and a woman came into the elevator and thought I had beaten

him. In

fact we only do

time outs and our children were never hit -but try to explain that

while your child looks out of control to a complete stranger. She

ignored me

while I calmly tried to explain -and continued to try to find out the

truth from

(then nonverbal and out of control crying) Tanner " Did somebody hit

you

honey...it's OK sweetheart you can tell me "

Can't change what happened -and it may not ever happen again (only

happened

to me once) but you can get a note from your child's MD that you can

carry and give out to those that stare or accuse you of abuse.

In regards to the police - they will look at the safety of the

child. They may want to know if there was abuse -but since that's

going to be hard to prove -they will probably want to know where was

the car when you had your daughter outside of it -and was there any

danger of her running into traffic, or getting hit by another car.

It's hard to know the right thing to do in all situations -if you

left her in the car and in her rage she accidentally hurt herself

somehow -some may blame you for leaving her alone in the car. There

is no easy answers -just advice from the doctors together with mom

and dad instincts -with age in our favor. In most cases -the older

our kids are -the less likely this is to happen.

Perhaps the next time your daughter acts this way -call the police

yourself -and let them know what your daughter is doing and ask them

what you should do. Perhaps the fear of a police car coming instead

of daddy -and a talk from the officer about how it's wrong to throw

things in the car while mommy is driving -and it's wrong to hurt

others -will keep this from happening again -and keep the " Good

Samaritans " away. The people who do intervene like this are not bad

people -they are trying to help a child who they believe is being

hurt by us -they just don't know what they don't know.

This is why (again) we need awareness for our population

http://www.cherab.org/information/LateTalkerPressRelease.html

-the average person out there just does not have a clue what we go

through -but fortunately or unfortunately -more and more do -because

the amount of our multi faceted communication impaired children is

not small

-and it's continuing to grow.

One day you may look back on this and laugh. Either way just keep

thinking during the rough times -this too shall pass.

~~~~~~~~~~~~~~~~~end of archive

=====

[Guest guest]

Honestly I think you need to focus on it all. Do you think your doc

is leaning toward an autism diagnosis and thinks your apraxia

concerns are sort of " wishful thinking? " No doubt about it,

reading " The Late Talker " and figuring out what is and is not your

boy is critical. I would then take that list to a good

neurodevelopmental pediatrician to get a better picture of what you

are looking at. Please do not misunderstand me...I am not saying your

child is autistic. I think though some docs do not know apraxia

enough and run to the autism label and that can really mess up what

is and is not an issue and how to address it. Whatever the label, OT

issues overlap with speech issues so that is why I am thinking you

really have to address it all together. I would not wait on anything

because the earlier he gets the right targeted therapy the better his

chances.

If you list your area you may be able to get some good names here.

Why is it that you think the docs are not seeing the receptive that

you are? Is it just a case of limited time of observation.

In our case we had peekaboo comprehension and now he really

understands it all...a beautiful step forward.

>

> My " mommy gut feeling " tells me that my son, , has childhood

> verbal apraxia, so I brought it up to my Ped at his 2.5 year well-

> check. I'm not sure I fully understood what she was saying, but I

> got the feeling that she didn't agree because my son also has

> other " issues " besides his speech delay. He has fixation issues,

> some sensory-motor planning problems, and has been said to have a

> cognitive delay that I'm not sure if I agree with. I'm not sure

what

> the Ped's wording was, but I think she was trying to tell me that

> apraxia is a condition that exists on its own. That if he had it,

he

> would comprehend most of what I'm saying but simply be unable to

> respond. It wouldn't be paired with a fixation issue or with poor

> sensory-motor skills. Does anyone have any thoughts on this?

>

>

> is almost 2.5 years old and receives speech and OT services

> through our local ISD's Early Intervention program. I was

wondering

> what M.A. C.C.C. SLP stand for. I just found out that his speech

> thereapist is an MA CCC SLP and I wasn't sure if that title was

> interchangable with " speech therapist " . (I'd ask, but I don't want

> to offend her.) He sees his SLP once/week in a group setting, and

> she sometimes pulls him out of his OT/special ed preschool teacher

> group for individual help and observation. I've expressed my

> concerns regarding apraxia, however they don't diagnose through

this

> program. She said she would look for signs but at this point is

more

> concerned with having him try to use more words for communication

and

> I think focus on his other issues as well. I realize that you have

to

> first build a foundation for speech. However, I feel that he does

> comprehend at least 80% of what we're saying to him, but either

can't

> or isn't trying to use words to communicate his needs. He can

point

> to many objects in books when we ask him to, but doesn't usually

try

> to say " juice " when he's thirsty. (But he will do the baby sign.)

> Most of his words are used for " labeling " things. He names most

> simple shapes and all the letters of the alphabet besides " W " . We

> can distinguish between them, but the average person would not be

> able to. His SLP says that it seems as if struggles to stick

> his tongue out and also, he doesn't usually lick food off of his

> lips. I'm in the process of re-reading " The Late Talker " and have

> identified 17 things abouy that I belive are characteristics

of

> apraxia. At this point, should I be pushing for a diagnosis or

> should we be focusing mainly on his sensory-motor planning

> skills, " foundation for communication " and fine motor skills?

>

> Thanks for reading. I realize that I do ask a lot of " elementary

> level " questions here, but I don't know where else to look for

these

> answers.

>

[Guest guest]

Nothing new to you, as you've read my story before. Also, I just

posted about this very topic today, so look for one of my emails

marked " long " . The summary:

--thought it was " just " apraxia

--then discovered low tone issues, which led to discovery of fine and

gross motor issues

--then discovered artificials in the diet were bad for him

--then discovered dairy in the diet is bad for him

--then received confirmation that he has some auditory processing

issues (which I think are, in large part, due to undiscovered dairy

intolerance)

Each step along the way, we thought we had " the " answer. But you

keep peeling the onion, and there are other layers. Since he's not

reading yet (still early), I am hyper-vigilant regarding that

academic skill. They don't really do any decoding in kindergarten --

it's mostly phonemic awareness and sight words right now. He's doing

fine, but having been blindsided in the past, it is going to be hard

to NOT wait for other shoes to drop. And as you can see from one of

my other posts today, we all have to remember to be vigilant about

what we already do know -- don't stop the stuff that works just

because he looks " cured " .

That said, I do like to go to the zoo, too, although those darn

turtles are always going at it when we are there. Not ready to

explain that one!

in NJ

>

> Why are you waiting for the other shoe to drop? If he's talking and

> he's not diagnosed with anything -perhaps he 'was' just a late

> talker! That's a good thing!!! As Bill Maher said the other night

> on his show " I'm still wearing the blue underwear and I still don't

> have cancer " to prove the point that just because you do so much

> stuff and your child is fine doesn't mean it's because of the stuff

> you do. Perhaps...just perhaps you don't have to do anything but

take

> your kid to the zoo.

>

> =====

>

[Guest guest]

Ditto's - that's a high fiver! I've got an onion too.

Example: While my freshly 5 year old seems to be coming out of dark -

I just opened lab results today - he's not as " well " as he appears.

While I'll discuss details with Rossignal on my next telephone apt -

looks to me like a clear positive for oxidative stress.

>

> Nothing new to you, as you've read my story before. Also, I just

> posted about this very topic today, so look for one of my emails

> marked " long " . The summary:

>

> --thought it was " just " apraxia

> --then discovered low tone issues, which led to discovery of fine

and

> gross motor issues

> --then discovered artificials in the diet were bad for him

> --then discovered dairy in the diet is bad for him

> --then received confirmation that he has some auditory processing

> issues (which I think are, in large part, due to undiscovered dairy

> intolerance)

>

> Each step along the way, we thought we had " the " answer. But you

> keep peeling the onion, and there are other layers. Since he's not

> reading yet (still early), I am hyper-vigilant regarding that

> academic skill. They don't really do any decoding in kindergarten -

-

> it's mostly phonemic awareness and sight words right now. He's

doing

> fine, but having been blindsided in the past, it is going to be

hard

> to NOT wait for other shoes to drop. And as you can see from one

of

> my other posts today, we all have to remember to be vigilant about

> what we already do know -- don't stop the stuff that works just

> because he looks " cured " .

>

> That said, I do like to go to the zoo, too, although those darn

> turtles are always going at it when we are there. Not ready to

> explain that one!

>

> in NJ

>

>

[Guest guest]

What does NDP stand for? Neurological developmental ped? I was able

to get a referral to a developmental pediatrician. Is it the same?

>

> Can you get an NDP? Sometimes neurologists are not language

oriented.

>

[Guest guest]

Neurodevelopmental pediatrician is what I am referring to.

> >

> > Can you get an NDP? Sometimes neurologists are not language

> oriented.

> >

>

[Guest guest]

We live in Michigan. I guess you could say we're in the Detroit

area. Unfortunately, I don't know any other moms who have children

with the same issues. My husband works with a man who has a son with

apraxia. They're in the same building and he has been trying to

contact this man via e-mail. I want to find out how they got this

diagnosis. I'm willing to drive anywhere there is a developmental

ped. who understands apraxia the way you ladies do. I don't feel our

ped understands apraxia from the speech point of view. She was

willing to write me a referral for a developmental ped. I will

schedule an appointment and she what he/she says. If I find that I'm

not getting anywhere, what would the next step be? I think I may

have found an SLP with tons of experience with apraxic children. (Is

that term P.C.?) Can an SLP give a diagnosis?

is using quite a few signs as a form of alternative

communication. He sometimes says part of a word to communicate what

he wants. " Puh " is the way he tells me he wants cereal. It can mean

any cereal but originally came from Reeses Peanut Butter Puffs. (we

try not to indulge in that one too often=-) We are starting to use

pictures too, but it's too soon to say how well that will work. He

seems most excited about signing, and it's amazing how quickly he

learns new signs. He learned that the sign for " music " would get me

to play his baby einstein CD quickly. It took him less than 10

minutes to get the sign. His sensory-motor planning issues sometimes

makes signing difficult... and he doesn't always get the

sign " correctly " ... but it is really working out well for his

frustration. A bell went off in my mind when I read the discription

of dyspraxia in The Late Talker. A lot of the warning signs in the

book fit to a T! But in terms of oral apraxia, his only issue

seems to be that his tongue seems lazy. It seems like he has to work

extra hard in order to stick it out. He has no trouble smiling and

has never been a big drooler. But he is a " mouth stuffer " . As a

baby, he really never put a lot of things in his mouth. I know

that's an important phase of learning that he really wasn't

interested in as well as a sensory experience that he has been

missing. He preferred to chew his fingers or one of those cloth

diaper/burp cloths. I'm not sure if that is relevant though.

That's another problem. What is relevant? I have this detailed

notebook of information that I've been bringing along to share at his

appointments, but no one really seems intersted. And when I pull it

out, I get the feeling that what I'm sharing isn't relevant. It's so

frustrating! It's like everyone we've seen has too much on their

caseloads, with the exception of our EI staff. They're wonderful!

Through our EI program, he has seen an audiologist, an SLP, a

psychologist, and a social worker. I guess that's the norm with this

program in order to check all areas of development. They found that

his developmental age was about the same as his chronological age,

except in the area of communication. My thoughts is that they did

this in order to " qualify " him.

Again, thank you so much for all this information. I only wish there

were more than 24 hours in a day. There is so much I want to read

and learn, but I still need to spend time with my son and also my

daughter, who keep me quite busy. (I can almost hear the ladies on

this board shouting " amen! " and " I hear ya! " ) But seriously, I do

appreciate all the resources you and the ladies here have shared with

me. It makes it so much easier!

>

> That's so sad that you've felt disregarded as now is a time you

need

> more support. But after reading your message it's no wonder. It

> sounds like there isn't anyone you've taken your child to who

really

> understands apraxia.

>

> It's not that many children with apraxia have autistic tendencies -

> but many children with apraxia have sensory integration dysfunction

> which symptoms have been linked wrongly to 'just' autism -but signs

> of sensory integration dysfunction are merely signs of sensory

> integration dysfunction. Stuffing the mouth is another sign of

> sensory issues -they stuff because they don't feel the amount of

food

> in the mouth.

>

> Tanner used to zone us out too...until we provided alternative ways

> of communication. So in addition to sensory issues, frustration

can

> also cause a child to shut down. I've posted many times how each

> morning I would ask my boys what they wanted for breakfast and only

> Dakota would answer. After awhile Tanner wouldn't even look at me

> when I asked. As it says in The Late Talker book (if you didn't

get

> to this part yet) one day I made up a menu to play " restaurant "

> (actually I was in Jersey at the time so I think I called

> it " diner " ) but anyway I did simple pictures of eggs, oatmeal,

> french toast, pancakes- and said that they had to point to what

they

> wanted on the menu. Tanner came to life which is the best way to

put

> it -he was SO excited to point to what he wanted because quite

> frankly it was the first chance he had to. Of course now I had to

> become a short order chef -but it was so worth it. Tanner embraced

> that menu for the longest time like it was a lifeline or

something.

> I had to redraw it a few times because each morning Tanner would

> search it out and it would get syrup on it and all from Tanner

> clutching on to it and keeping it by his side while he ate

breakfast.

>

> So the million dollar question...what alternative or augmentive

> communication does your child use, simple sign, picture exchange -

if

> any? And if he does have alternative ways to communicate does he

> appear to be excited about using them?

>

> It sounds to me like your SLP (among the others) isn't that

> knowledgeable about apraxia in that if a child can't move his

tongue

> on command he or she will also have trouble with communication.

> Working on the oral aspects of apraxia is working on speech! Try

to

> talk without moving your tongue -or moving it the right way. This

is

> also why some children in this group with apraxia who don't get

> appropriate therapy end up talking with a flacid sound (for those

> that don't know what that means -they sound like they are

deaf...they

> don't have the right movement in their tongue)

>

> It sounds like your child should be checked by a different

pediatric

> neurologist or developmental pediatrician for oral apraxia as well

as

> verbal and for motor planning deficits in the body -known in some

> parts of the world outside of the US as dyspraxia. Here in the US

> apraxia and dyspraxia are used interchangeably. Your child based on

> what you wrote here clearly has a number of warning signs.

>

> Tanner also had trouble with the back of the tongue sounds like K -

> but he had issues with the J sound too. I've posted a few times

how

> Tanner used to call my sister (Auntie ) doo doo. We all laugh

> about that if it comes up -but that seems like decades ago! For

the

> K sound I remember we worked on that laying Tanner on his back on a

> bean bag chair in Ortega's office (his SLP at the time)

>

> Tricks to teach drinking from a straw. Cut the straw short so he

has

> to put his mouth very close to the liquid if using a cup...but

number

> one way? Get those juice boxes and squeeze the juice box so the

> liquid comes up and work on not squeezing as much over time.

That's

> the most awesome way. Also I just posted a long message on horn

and

> straw therapy written by Sara -did you see that?

>

> The diagnosis you received from the neurologist I'd have him

clarify

> what he means by receptive delay -or better yet based on his lack

of

> picking up some other things - let us know where you are from and

> perhaps some of the members can suggest neuroMDs they are thrilled

> with who helps that child get the services they need early. (they

> call it early intervention for a reason) It's hard enough to asses

a

> receptive delay in a speech impaired teen or adult -no less a

> preschool child. You need professionals that understand your

> child's impairments because speech and receptive ability don't go

> hand in hand. When the neurologist you saw said apraxia is

> the " inability to perform a certain movement " did he add the key

> words to complete the definition...on command? Those with apraxia

at

> times can move their tongue or say a word...just can't always do it

> when they want. In fact the more they want to do something the

less

> likely they can -and each time they try may be different. This by

> the way is another reason why ABA therapy is not appropriate and

can

> be detrimental to a child with apraxia who does not have autism.

The

> goal is to help by therapy and teaching -not to frustrate even

more!

> So don't be too quick to let others say autism unless it is. And

> then if he is make sure the therapist does modified ABA.

>

> Based on your email I'm taking it that you are not from New Jersey

as

> none of the professionals you've worked with seem to have noticed

> what appears to be blaring early warning signs of apraxia and

sensory

> issues. Are there any other parents around you that you know have

> children with the same issues? What state are you in?

>

> For me personally I only took Tanner to pediatric neurologists and

> developmental pediatricians for evaluations as I myself never

viewed

> Tanner's issues as psychological so why take him to a psychologist

> was my thinking. I used my evaluations to help us advocate any

time

> the school at that time did something that was not appropriate.

>

> Guess this message is all over the place but tried to answer all of

> your concerns. Hope it helped a bit more and don't hesitate to

> continue to ask!

>

> Below as promised are three messages about sensory breakdowns -

> including a time someone on an elevator thought I was hitting

Tanner

> or something based on how he was crying (and nonverbal at the

time!!)

>

> Re: Belly Button & Apraxia?

> Tue Oct 22, 2002 6:04 pm

>

>

> Hi Ann and welcome to the group!

>

> Most children with apraxia have one or more mild neurological " soft

> signs " such as sensory integration dysfunction, hypotonia (low

> tone), and/or motor problems in other parts of the body. Only a

> rare apraxic child has no other issues - is one of them

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

>

> Sometimes it's hard for us as parents or for a typical pediatrician

> to pick up the subtle soft signs when the child is really young.

> And yes -most apraxic children when really young look like any other

> child. They are usually seen as " just a late talker " The apraxia,

> hypotonia, DSI and motor problems of the body if any or all of them

> are present - tend to become a bit more obvious as the child grows

> older and more and more is expected of them. Sadly however -a

> child's brain has the best chance to rewire in the early years -

> while most parents are waiting for their child to " just start

> talking " without providing any of the therapies that could possibly

> help give the child a better chance.

>

> Have you taken your child to a neurodevelopmental doctor for an

> evaluation yet? They are great at picking up these types of things -

> and can help in advocating to provide your child with additional

> Occupational Therapy services through Early Intervention or the

> school system to help.

>

> I'm not an OT or an MD -but as a parent who's child had DSI and

also

> did strange

> things -not fascination with his belly button like your daughter -

> but sensory things like holding small items for hours and screaming

> (with his eyes bugged out and like he was in pain) if anyone tried

> to take them out of his hand, and screaming in pain if you patted

> his head or tried to tickly him -but not crying a bit when getting a

> shot -or when he got a boo boo -sounds like your daughter also has

> some type of sensory integration dysfunction and her body is for

> whatever reason craving more stimulation. Tanner had to

> be " brushed " , had vibrators held to his face -and he did all types

> of sensory activities to help. (in addition to all the speech

> therapy of course!)

>

>

> Here are some great pages of information on sensory integration

> dysfunction from Speechville.com:

>

> http://www.speech-express.com/associated-disabilities/sensory-

> integration.html

>

> http://www.speech-express.com/occupational-therapy/links.html

>

> With proper therapy and early intervention -DSI is another thing

> that your child can learn to overcome! Tanner's is hardly

> noticeable at all anymore -but when we didn't know about it and

> before treatment -it was horrible!!!

>

> Wed Nov 13, 2002 10:19 pm

> Re: getting up to speed

>

>

> Hi !

>

> Other than not talking yet -you can look for any neuro

> " soft signs " even before the trip to the neurodevelopmental doctor -

> and yes, that's excellent you are going to take him there! Without

> the soft signs -it's harder to diagnose a nonverbal two year old -

> which doesn't mean you can't start appropriate therapy just in case

> if apraxia is suspected -can't hurt and will probably help no matter

> what the reason. Even a two year old with " just " a simple delay in

> speech can be mentally stimulated to talk sooner while having fun

> with some early intervention speech therapy that may look lots like

> play to the untrained eye. A big question is did he ever have

> sounds that he lost -did he ever regress?

>

> A neurodevelopmental medical exam will look at a number of things in

> your son outside of communication skills, or receptive and

> expressive language -including physical development and motor

> skills, thinking and learning cognitive development etc.

>

> Soft signs in apraxic children are typically mild -but in most cases

> there -most of us just didn't know what they were because up to

> CHERAB nobody pointed them out. I try to raise awareness because if

> your child has any of the following -as a parent you will know once

> pointed

> out-and

> so will the neuro MD you bring your child to.

>

> When you run a large support group -you tend to see what is

> happening in a group -so support groups are excellent for really

> getting to the facts and the " norm " -and I'll get to the EFA

question

> in that

> regard too. I try to put the neuro soft signs in a way that

> everyone will understand -and these soft signs are all based on my

> son Tanner -who I and everyone including his first pediatric group

> all thought was a normal baby other than he was just a late talker.

> This same child showed all the strong warning signs -we just didn't

> know -however -all the soft signs were picked up right away by all

> the neurodevelopmental MD's Tanner has seen once I insisted on

taking

> him (his

> regular pediatrician wanted to wait till three) -as well as by the

> PTs,

> OTs and SLPs too. I could now kick myself that I didn't see them

> then -but how would I know? That's why I want to let all of you

> know -to prevent it from ever happening to another, and so children

> could be get into therapy younger and have a great chance for

> success.

>

> Here are some quick parent friendly signs of oral apraxia:

>

> If you put peanut butter on his lips can he lick it off or does he

> use his fingers? Did he blow out the candles on his birthday cake

> when he turned two? Can he imitate funny faces? If you take his

> picture and say " smile " does he smile?

>

> Here are some quick parent friendly signs of mild hypotonia:

>

> A child with hypotonia will feel heavier than a child of the same

> weight without hypotonia (kind of like the difference between

> picking up your child when he's fast asleep vs. awake) Does he

> appear to tire faster than other kids his age walking in the mall

> etc.? Will you and your wife not dream of taking him anywhere

> without the stroller because you know if you don't you will be stuck

> carrying him and if you don't pick him up he will sit on the floor

> crying with his arms in the air for you to pick him up again? When

> you pick him off the floor -it's not as easy as it looks for you -or

> others that try! Most will say " wow he's solid! " when picking him

> up. His body may look like a cherab -rounded and soft, and if more

> severe the child may look a bit like a rag doll -gravity just pulls

> them down.

>

> Here are some quick parent friendly signs of sensory integration

> dysfunction:

>

> This is tough because it can affect any of the senses -touch, sight,

> hearing, motion, etc. So in a nutshell -Your child will seem to be

> bothered by something that others aren't and will not be bothered by

> something most are if that makes sense.

>

> Here are some of my son's signs that boy do I wish I knew this is

> what he had when he was screaming and people were looking at me

> like " what are you doing to that poor child "

>

> Your child may insist on a certain color cup each time -and will

> throw a fit if it's any other. My son for would carry a small cap

> from a pen or some other small strange object around for hours -and

> if you tried to open his clutched hand - he would freak out -even if

> you thought he was asleep and tried to take the pen cap away so he

> wouldn't choke on it while he was sleeping -he would wake up and

> freak out if he wasn't 100% asleep yet. He wouldn't cry for shots -

> but would say " oww " and cringe if you patted his head or tickled his

> arm. When Tanner was a baby (after the fevers and regression) his

> screams when I brought him to public places like the store would

> sound like high pitched extreme pain screams and he would stiffen

> his body -his eyes would bulge out -and he would do this just once

> in a while (Thank God) but when he did -he would cry till he fell

> asleep in a sweat -with nobody being able to figure out what was

> wrong (my Aunt has her PhD in nursing and my sister is a

> professional nanny -nobody had a clue) Just strange stuff that

> seemed quirky. DSI can also be the child that throws a tantrum like

> he's in pain -while you have no clue what he's crying about. Why

> DSI happens to a nonverbal child who is too young to let us know is

> a cruel joke -so it's important for us to know if this is what your

> child has. The Out of Sync Child is one of the books most of us buy

> when our child is diagnosed with any multi faceted neurologically

> based communication disorder like apraxia.

>

> Here are some quick parent friendly signs of motor planning problems

> in the body:

> Just like with speech -your child may be able to do something once

> and then appear not to remember how to do it again. His actions

> look forced or planned -he's slower because you can see he's

> thinking before each movement. His development is a bit off in that

> he can do many things advanced -but for some reason can't seem to do

> certain simple things that a much younger child even should be able

> to do. Again -just doesn't make sense.

>

> Then you have to know if movement problems are from weakness

> (hypotonia) or motor planning (apraxia/dyspraxia) -just like with

> speech. Again -it could be a bit of both -and again -both are

> neurologically based.

>

> As far as EFAs. If you have a local support group I highly suggest

> you go. Most people that post here will post if they have really

> good or really bad results. You'll find out the " norm " either right

> away at support groups -or over time on grouplists. So much faster

> at local groups you will find that not all children on too high a

> level of EFAs will have tantrums -you will find that there are

> actually quite a few children on higher levels -and doing great.

> You also won't find high levels of EFAs cause tantrums in research

> that's been done yet on PUFAs. Not to say it doesn't happen -it's

> just not the norm. In most cases actually -tantrums come when the

> EFA dosage is lowered. In your child's case -one week is way to

> soon to know however. As a parent right now -all you know is you

> believe there is a sign of both good and bad. Unless you stop the

> Efalex -you won't know if the tantrums and the new sounds are from

> the Efalex -or just a coincidence.

>

> Efalex is the formula my son Tanner started on and you can read his

> story here http://www.drstordy.com/stories.html I believe the

> ProEFA is better because there is higher EPA in the formula -where

> Efalex -even though it's also an Omega 3 and Omega 6 formula has

> very little EPA. Most of our children that were on Efalex when

> switched to a lower dosage of ProEFA had a surge -but if we lowered

> the dosage of Efalex -ooooohhhh -nightmare tantrums! Either way -

> again -your son has only been on it for a week -and it sounds good

> so far about the increase in sounds -right on target to what most of

> us see. You should hear the first word in the next week or two -and

> then attempts at two word sentences within 2 to 3 months if your

> child is apraxic.

>

> One other thing however to keep in mind-since you will be seeing the

> neurodevelopmental doctor after starting Efalex -he may not pick up

> the apraxia or the soft signs -you may want to stop the Efalex until

> after the evaluation -and then start again. An apraxic child on

> Efalex will still require therapy -SLP and OT etc. however -they

> don't present as severe and for insurance reasons -it's best to have

> the evaluations before the EFAs. It's up to you. And also -if you

> stop -you can see if the positive and negative signs stop too -and

> see if they come back when you put him on again.

>

> About your other thought. Why do you suspect ADHD besides the stiff

> joints anyway? I have a child with ADHD and know nothing (and up to

> you have heard nothing) about stiff joints being a sign of ADHD -my

> son Dakota is so far from that actually -he looks more like a monkey

> the way he climbs and jumps off trees and sides of buildings etc.

> I'm sure one or more of the developmental pediatricians will have a

> comment on that.

>

> Re: Need some suggestions

> Fri Jun 6, 2003 10:11 am

>

>

> Hi Suzi!

>

> I completely relate to what you went through -I had posted a few

> years back (in the archives somewhere) a similar incident with

Tanner

> on an

> elevator when he was three and

> nonverbal. He was having a meltdown and was screaming crying (like

> someone was sticking pins in him as all of you with DSI kids know

> too well) and a woman came into the elevator and thought I had

beaten

> him. In

> fact we only do

> time outs and our children were never hit -but try to explain that

> while your child looks out of control to a complete stranger. She

> ignored me

> while I calmly tried to explain -and continued to try to find out

the

> truth from

> (then nonverbal and out of control crying) Tanner " Did somebody hit

> you

> honey...it's OK sweetheart you can tell me "

>

> Can't change what happened -and it may not ever happen again (only

> happened

> to me once) but you can get a note from your child's MD that you can

> carry and give out to those that stare or accuse you of abuse.

>

> In regards to the police - they will look at the safety of the

> child. They may want to know if there was abuse -but since that's

> going to be hard to prove -they will probably want to know where was

> the car when you had your daughter outside of it -and was there any

> danger of her running into traffic, or getting hit by another car.

>

> It's hard to know the right thing to do in all situations -if you

> left her in the car and in her rage she accidentally hurt herself

> somehow -some may blame you for leaving her alone in the car. There

> is no easy answers -just advice from the doctors together with mom

> and dad instincts -with age in our favor. In most cases -the older

> our kids are -the less likely this is to happen.

>

> Perhaps the next time your daughter acts this way -call the police

> yourself -and let them know what your daughter is doing and ask them

> what you should do. Perhaps the fear of a police car coming instead

> of daddy -and a talk from the officer about how it's wrong to throw

> things in the car while mommy is driving -and it's wrong to hurt

> others -will keep this from happening again -and keep the " Good

> Samaritans " away. The people who do intervene like this are not bad

> people -they are trying to help a child who they believe is being

> hurt by us -they just don't know what they don't know.

>

> This is why (again) we need awareness for our population

> http://www.cherab.org/information/LateTalkerPressRelease.html

> -the average person out there just does not have a clue what we go

> through -but fortunately or unfortunately -more and more do -because

> the amount of our multi faceted communication impaired children is

> not small

> -and it's continuing to grow.

>

> One day you may look back on this and laugh. Either way just keep

> thinking during the rough times -this too shall pass.

> ~~~~~~~~~~~~~~~~~end of archive

>

> =====

>

[Guest guest]

I'm pretty sure our doctor does not think he has autism. I think she

just thinks he is a late talker and that we're currently doing all we

can do at this point. The neurologist pretty much ruled out autism

because he did not feel that showed enough symptoms to fall on

the spectrum. I did make a list of all the symptoms of apraxia that

I noticed and will take it with me to the developmental

pediatrician. I didn't get the feeling that my ped was interested in

it though because she didn't seem to have the same understanding or

definition of apraxia as me.

I don't think they're seeing the same receptive language ability as

me because he pretty much clings to me. They don't see him reacting

and responding the way he does at home. The neurologist said

his " developmental language disorder " affected receptive language to

a far lesser degree than expressive language. I just think he gets

frustrated and tunes people out when he feels he isn't being

understood. Does that make any sense? Maybe I'm just wishful

thinking too.

> >

> > My " mommy gut feeling " tells me that my son, , has childhood

> > verbal apraxia, so I brought it up to my Ped at his 2.5 year well-

> > check. I'm not sure I fully understood what she was saying, but

I

> > got the feeling that she didn't agree because my son also has

> > other " issues " besides his speech delay. He has fixation issues,

> > some sensory-motor planning problems, and has been said to have a

> > cognitive delay that I'm not sure if I agree with. I'm not sure

> what

> > the Ped's wording was, but I think she was trying to tell me that

> > apraxia is a condition that exists on its own. That if he had

it,

> he

> > would comprehend most of what I'm saying but simply be unable to

> > respond. It wouldn't be paired with a fixation issue or with

poor

> > sensory-motor skills. Does anyone have any thoughts on this?

> >

> >

> > is almost 2.5 years old and receives speech and OT services

> > through our local ISD's Early Intervention program. I was

> wondering

> > what M.A. C.C.C. SLP stand for. I just found out that his speech

> > thereapist is an MA CCC SLP and I wasn't sure if that title was

> > interchangable with " speech therapist " . (I'd ask, but I don't

want

> > to offend her.) He sees his SLP once/week in a group setting,

and

> > she sometimes pulls him out of his OT/special ed preschool

teacher

> > group for individual help and observation. I've expressed my

> > concerns regarding apraxia, however they don't diagnose through

> this

> > program. She said she would look for signs but at this point is

> more

> > concerned with having him try to use more words for communication

> and

> > I think focus on his other issues as well. I realize that you

have

> to

> > first build a foundation for speech. However, I feel that he

does

> > comprehend at least 80% of what we're saying to him, but either

> can't

> > or isn't trying to use words to communicate his needs. He can

> point

> > to many objects in books when we ask him to, but doesn't usually

> try

> > to say " juice " when he's thirsty. (But he will do the baby

sign.)

> > Most of his words are used for " labeling " things. He names most

> > simple shapes and all the letters of the alphabet besides " W " .

We

> > can distinguish between them, but the average person would not be

> > able to. His SLP says that it seems as if struggles to

stick

> > his tongue out and also, he doesn't usually lick food off of his

> > lips. I'm in the process of re-reading " The Late Talker " and

have

> > identified 17 things abouy that I belive are characteristics

> of

> > apraxia. At this point, should I be pushing for a diagnosis or

> > should we be focusing mainly on his sensory-motor planning

> > skills, " foundation for communication " and fine motor skills?

> >

> > Thanks for reading. I realize that I do ask a lot of " elementary

> > level " questions here, but I don't know where else to look for

> these

> > answers.

> >

>

[Guest guest]

If you are in the Detroit area, I highly recommend going to the Kaufman's

Childrens Center for speech & language. It is ran by Kaufman, who in my

opnion, is one of the most Knowledgable professionals out there in Apraxia. She

is in West Bloomfield. Email me privatly if you want more details about our

personal experience there. sbutler@...

And yes, a Speech & Language Pathologist is qualified to give the diagnosis of

Apraxia.

Good Luck!

[ ] Re: Question about getting a diagnosis and our

visit to the Ped's office

We live in Michigan. I guess you could say we're in the Detroit

area. Unfortunately, I don't know any other moms who have children

with the same issues. My husband works with a man who has a son with

apraxia. They're in the same building and he has been trying to

contact this man via e-mail. I want to find out how they got this

diagnosis. I'm willing to drive anywhere there is a developmental

ped. who understands apraxia the way you ladies do. I don't feel our

ped understands apraxia from the speech point of view. She was

willing to write me a referral for a developmental ped. I will

schedule an appointment and she what he/she says. If I find that I'm

not getting anywhere, what would the next step be? I think I may

have found an SLP with tons of experience with apraxic children. (Is

that term P.C.?) Can an SLP give a diagnosis?

is using quite a few signs as a form of alternative

communication. He sometimes says part of a word to communicate what

he wants. " Puh " is the way he tells me he wants cereal. It can mean

any cereal but originally came from Reeses Peanut Butter Puffs. (we

try not to indulge in that one too often=-) We are starting to use

pictures too, but it's too soon to say how well that will work. He

seems most excited about signing, and it's amazing how quickly he

learns new signs. He learned that the sign for " music " would get me

to play his baby einstein CD quickly. It took him less than 10

minutes to get the sign. His sensory-motor planning issues sometimes

makes signing difficult... and he doesn't always get the

sign " correctly " ... but it is really working out well for his

frustration. A bell went off in my mind when I read the discription

of dyspraxia in The Late Talker. A lot of the warning signs in the

book fit to a T! But in terms of oral apraxia, his only issue

seems to be that his tongue seems lazy. It seems like he has to work

extra hard in order to stick it out. He has no trouble smiling and

has never been a big drooler. But he is a " mouth stuffer " . As a

baby, he really never put a lot of things in his mouth. I know

that's an important phase of learning that he really wasn't

interested in as well as a sensory experience that he has been

missing. He preferred to chew his fingers or one of those cloth

diaper/burp cloths. I'm not sure if that is relevant though.

That's another problem. What is relevant? I have this detailed

notebook of information that I've been bringing along to share at his

appointments, but no one really seems intersted. And when I pull it

out, I get the feeling that what I'm sharing isn't relevant. It's so

frustrating! It's like everyone we've seen has too much on their

caseloads, with the exception of our EI staff. They're wonderful!

Through our EI program, he has seen an audiologist, an SLP, a

psychologist, and a social worker. I guess that's the norm with this

program in order to check all areas of development. They found that

his developmental age was about the same as his chronological age,

except in the area of communication. My thoughts is that they did

this in order to " qualify " him.

Again, thank you so much for all this information. I only wish there

were more than 24 hours in a day. There is so much I want to read

and learn, but I still need to spend time with my son and also my

daughter, who keep me quite busy. (I can almost hear the ladies on

this board shouting " amen! " and " I hear ya! " ) But seriously, I do

appreciate all the resources you and the ladies here have shared with

me. It makes it so much easier!

>

> That's so sad that you've felt disregarded as now is a time you

need

> more support. But after reading your message it's no wonder. It

> sounds like there isn't anyone you've taken your child to who

really

> understands apraxia.

>

> It's not that many children with apraxia have autistic tendencies -

> but many children with apraxia have sensory integration dysfunction

> which symptoms have been linked wrongly to 'just' autism -but signs

> of sensory integration dysfunction are merely signs of sensory

> integration dysfunction. Stuffing the mouth is another sign of

> sensory issues -they stuff because they don't feel the amount of

food

> in the mouth.

>

> Tanner used to zone us out too...until we provided alternative ways

> of communication. So in addition to sensory issues, frustration

can

> also cause a child to shut down. I've posted many times how each

> morning I would ask my boys what they wanted for breakfast and only

> Dakota would answer. After awhile Tanner wouldn't even look at me

> when I asked. As it says in The Late Talker book (if you didn't

get

> to this part yet) one day I made up a menu to play " restaurant "

> (actually I was in Jersey at the time so I think I called

> it " diner " ) but anyway I did simple pictures of eggs, oatmeal,

> french toast, pancakes- and said that they had to point to what

they

> wanted on the menu. Tanner came to life which is the best way to

put

> it -he was SO excited to point to what he wanted because quite

> frankly it was the first chance he had to. Of course now I had to

> become a short order chef -but it was so worth it. Tanner embraced

> that menu for the longest time like it was a lifeline or

something.

> I had to redraw it a few times because each morning Tanner would

> search it out and it would get syrup on it and all from Tanner

> clutching on to it and keeping it by his side while he ate

breakfast.

>

> So the million dollar question...what alternative or augmentive

> communication does your child use, simple sign, picture exchange -

if

> any? And if he does have alternative ways to communicate does he

> appear to be excited about using them?

>

> It sounds to me like your SLP (among the others) isn't that

> knowledgeable about apraxia in that if a child can't move his

tongue

> on command he or she will also have trouble with communication.

> Working on the oral aspects of apraxia is working on speech! Try

to

> talk without moving your tongue -or moving it the right way. This

is

> also why some children in this group with apraxia who don't get

> appropriate therapy end up talking with a flacid sound (for those

> that don't know what that means -they sound like they are

deaf...they

> don't have the right movement in their tongue)

>

> It sounds like your child should be checked by a different

pediatric

> neurologist or developmental pediatrician for oral apraxia as well

as

> verbal and for motor planning deficits in the body -known in some

> parts of the world outside of the US as dyspraxia. Here in the US

> apraxia and dyspraxia are used interchangeably. Your child based on

> what you wrote here clearly has a number of warning signs.

>

> Tanner also had trouble with the back of the tongue sounds like K -

> but he had issues with the J sound too. I've posted a few times

how

> Tanner used to call my sister (Auntie ) doo doo. We all laugh

> about that if it comes up -but that seems like decades ago! For

the

> K sound I remember we worked on that laying Tanner on his back on a

> bean bag chair in Ortega's office (his SLP at the time)

>

> Tricks to teach drinking from a straw. Cut the straw short so he

has

> to put his mouth very close to the liquid if using a cup...but

number

> one way? Get those juice boxes and squeeze the juice box so the

> liquid comes up and work on not squeezing as much over time.

That's

> the most awesome way. Also I just posted a long message on horn

and

> straw therapy written by Sara -did you see that?

>

> The diagnosis you received from the neurologist I'd have him

clarify

> what he means by receptive delay -or better yet based on his lack

of

> picking up some other things - let us know where you are from and

> perhaps some of the members can suggest neuroMDs they are thrilled

> with who helps that child get the services they need early. (they

> call it early intervention for a reason) It's hard enough to asses

a

> receptive delay in a speech impaired teen or adult -no less a

> preschool child. You need professionals that understand your

> child's impairments because speech and receptive ability don't go

> hand in hand. When the neurologist you saw said apraxia is

> the " inability to perform a certain movement " did he add the key

> words to complete the definition...on command? Those with apraxia

at

> times can move their tongue or say a word...just can't always do it

> when they want. In fact the more they want to do something the

less

> likely they can -and each time they try may be different. This by

> the way is another reason why ABA therapy is not appropriate and

can

> be detrimental to a child with apraxia who does not have autism.

The

> goal is to help by therapy and teaching -not to frustrate even

more!

> So don't be too quick to let others say autism unless it is. And

> then if he is make sure the therapist does modified ABA.

>

> Based on your email I'm taking it that you are not from New Jersey

as

> none of the professionals you've worked with seem to have noticed

> what appears to be blaring early warning signs of apraxia and

sensory

> issues. Are there any other parents around you that you know have

> children with the same issues? What state are you in?

>

> For me personally I only took Tanner to pediatric neurologists and

> developmental pediatricians for evaluations as I myself never

viewed

> Tanner's issues as psychological so why take him to a psychologist

> was my thinking. I used my evaluations to help us advocate any

time

> the school at that time did something that was not appropriate.

>

> Guess this message is all over the place but tried to answer all of

> your concerns. Hope it helped a bit more and don't hesitate to

> continue to ask!

>

> Below as promised are three messages about sensory breakdowns -

> including a time someone on an elevator thought I was hitting

Tanner

> or something based on how he was crying (and nonverbal at the

time!!)

>

> Re: Belly Button & Apraxia?

> Tue Oct 22, 2002 6:04 pm

>

>

> Hi Ann and welcome to the group!

>

> Most children with apraxia have one or more mild neurological " soft

> signs " such as sensory integration dysfunction, hypotonia (low

> tone), and/or motor problems in other parts of the body. Only a

> rare apraxic child has no other issues - is one of them

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

>

> Sometimes it's hard for us as parents or for a typical pediatrician

> to pick up the subtle soft signs when the child is really young.

> And yes -most apraxic children when really young look like any other

> child. They are usually seen as " just a late talker " The apraxia,

> hypotonia, DSI and motor problems of the body if any or all of them

> are present - tend to become a bit more obvious as the child grows

> older and more and more is expected of them. Sadly however -a

> child's brain has the best chance to rewire in the early years -

> while most parents are waiting for their child to " just start

> talking " without providing any of the therapies that could possibly

> help give the child a better chance.

>

> Have you taken your child to a neurodevelopmental doctor for an

> evaluation yet? They are great at picking up these types of things -

> and can help in advocating to provide your child with additional

> Occupational Therapy services through Early Intervention or the

> school system to help.

>

> I'm not an OT or an MD -but as a parent who's child had DSI and

also

> did strange

> things -not fascination with his belly button like your daughter -

> but sensory things like holding small items for hours and screaming

> (with his eyes bugged out and like he was in pain) if anyone tried

> to take them out of his hand, and screaming in pain if you patted

> his head or tried to tickly him -but not crying a bit when getting a

> shot -or when he got a boo boo -sounds like your daughter also has

> some type of sensory integration dysfunction and her body is for

> whatever reason craving more stimulation. Tanner had to

> be " brushed " , had vibrators held to his face -and he did all types

> of sensory activities to help. (in addition to all the speech

> therapy of course!)

>

>

> Here are some great pages of information on sensory integration

> dysfunction from Speechville.com:

>

> http://www.speech-express.com/associated-disabilities/sensory-

> integration.html

>

> http://www.speech-express.com/occupational-therapy/links.html

>

> With proper therapy and early intervention -DSI is another thing

> that your child can learn to overcome! Tanner's is hardly

> noticeable at all anymore -but when we didn't know about it and

> before treatment -it was horrible!!!

>

> Wed Nov 13, 2002 10:19 pm

> Re: getting up to speed

>

>

> Hi !

>

> Other than not talking yet -you can look for any neuro

> " soft signs " even before the trip to the neurodevelopmental doctor -

> and yes, that's excellent you are going to take him there! Without

> the soft signs -it's harder to diagnose a nonverbal two year old -

> which doesn't mean you can't start appropriate therapy just in case

> if apraxia is suspected -can't hurt and will probably help no matter

> what the reason. Even a two year old with " just " a simple delay in

> speech can be mentally stimulated to talk sooner while having fun

> with some early intervention speech therapy that may look lots like

> play to the untrained eye. A big question is did he ever have

> sounds that he lost -did he ever regress?

>

> A neurodevelopmental medical exam will look at a number of things in

> your son outside of communication skills, or receptive and

> expressive language -including physical development and motor

> skills, thinking and learning cognitive development etc.

>

> Soft signs in apraxic children are typically mild -but in most cases

> there -most of us just didn't know what they were because up to

> CHERAB nobody pointed them out. I try to raise awareness because if

> your child has any of the following -as a parent you will know once

> pointed

> out-and

> so will the neuro MD you bring your child to.

>

> When you run a large support group -you tend to see what is

> happening in a group -so support groups are excellent for really

> getting to the facts and the " norm " -and I'll get to the EFA

question

> in that

> regard too. I try to put the neuro soft signs in a way that

> everyone will understand -and these soft signs are all based on my

> son Tanner -who I and everyone including his first pediatric group

> all thought was a normal baby other than he was just a late talker.

> This same child showed all the strong warning signs -we just didn't

> know -however -all the soft signs were picked up right away by all

> the neurodevelopmental MD's Tanner has seen once I insisted on

taking

> him (his

> regular pediatrician wanted to wait till three) -as well as by the

> PTs,

> OTs and SLPs too. I could now kick myself that I didn't see them

> then -but how would I know? That's why I want to let all of you

> know -to prevent it from ever happening to another, and so children

> could be get into therapy younger and have a great chance for

> success.

>

> Here are some quick parent friendly signs of oral apraxia:

>

> If you put peanut butter on his lips can he lick it off or does he

> use his fingers? Did he blow out the candles on his birthday cake

> when he turned two? Can he imitate funny faces? If you take his

> picture and say " smile " does he smile?

>

> Here are some quick parent friendly signs of mild hypotonia:

>

> A child with hypotonia will feel heavier than a child of the same

> weight without hypotonia (kind of like the difference between

> picking up your child when he's fast asleep vs. awake) Does he

> appear to tire faster than other kids his age walking in the mall

> etc.? Will you and your wife not dream of taking him anywhere

> without the stroller because you know if you don't you will be stuck

> carrying him and if you don't pick him up he will sit on the floor

> crying with his arms in the air for you to pick him up again? When

> you pick him off the floor -it's not as easy as it looks for you -or

> others that try! Most will say " wow he's solid! " when picking him

> up. His body may look like a cherab -rounded and soft, and if more

> severe the child may look a bit like a rag doll -gravity just pulls

> them down.

>

> Here are some quick parent friendly signs of sensory integration

> dysfunction:

>

> This is tough because it can affect any of the senses -touch, sight,

> hearing, motion, etc. So in a nutshell -Your child will seem to be

> bothered by something that others aren't and will not be bothered by

> something most are if that makes sense.

>

> Here are some of my son's signs that boy do I wish I knew this is

> what he had when he was screaming and people were looking at me

> like " what are you doing to that poor child "

>

> Your child may insist on a certain color cup each time -and will

> throw a fit if it's any other. My son for would carry a small cap

> from a pen or some other small strange object around for hours -and

> if you tried to open his clutched hand - he would freak out -even if

> you thought he was asleep and tried to take the pen cap away so he

> wouldn't choke on it while he was sleeping -he would wake up and

> freak out if he wasn't 100% asleep yet. He wouldn't cry for shots -

> but would say " oww " and cringe if you patted his head or tickled his

> arm. When Tanner was a baby (after the fevers and regression) his

> screams when I brought him to public places like the store would

> sound like high pitched extreme pain screams and he would stiffen

> his body -his eyes would bulge out -and he would do this just once

> in a while (Thank God) but when he did -he would cry till he fell

> asleep in a sweat -with nobody being able to figure out what was

> wrong (my Aunt has her PhD in nursing and my sister is a

> professional nanny -nobody had a clue) Just strange stuff that

> seemed quirky. DSI can also be the child that throws a tantrum like

> he's in pain -while you have no clue what he's crying about. Why

> DSI happens to a nonverbal child who is too young to let us know is

> a cruel joke -so it's important for us to know if this is what your

> child has. The Out of Sync Child is one of the books most of us buy

> when our child is diagnosed with any multi faceted neurologically

> based communication disorder like apraxia.

>

> Here are some quick parent friendly signs of motor planning problems

> in the body:

> Just like with speech -your child may be able to do something once

> and then appear not to remember how to do it again. His actions

> look forced or planned -he's slower because you can see he's

> thinking before each movement. His development is a bit off in that

> he can do many things advanced -but for some reason can't seem to do

> certain simple things that a much younger child even should be able

> to do. Again -just doesn't make sense.

>

> Then you have to know if movement problems are from weakness

> (hypotonia) or motor planning (apraxia/dyspraxia) -just like with

> speech. Again -it could be a bit of both -and again -both are

> neurologically based.

>

> As far as EFAs. If you have a local support group I highly suggest

> you go. Most people that post here will post if they have really

> good or really bad results. You'll find out the " norm " either right

> away at support groups -or over time on grouplists. So much faster

> at local groups you will find that not all children on too high a

> level of EFAs will have tantrums -you will find that there are

> actually quite a few children on higher levels -and doing great.

> You also won't find high levels of EFAs cause tantrums in research

> that's been done yet on PUFAs. Not to say it doesn't happen -it's

> just not the norm. In most cases actually -tantrums come when the

> EFA dosage is lowered. In your child's case -one week is way to

> soon to know however. As a parent right now -all you know is you

> believe there is a sign of both good and bad. Unless you stop the

> Efalex -you won't know if the tantrums and the new sounds are from

> the Efalex -or just a coincidence.

>

> Efalex is the formula my son Tanner started on and you can read his

> story here http://www.drstordy.com/stories.html I believe the

> ProEFA is better because there is higher EPA in the formula -where

> Efalex -even though it's also an Omega 3 and Omega 6 formula has

> very little EPA. Most of our children that were on Efalex when

> switched to a lower dosage of ProEFA had a surge -but if we lowered

> the dosage of Efalex -ooooohhhh -nightmare tantrums! Either way -

> again -your son has only been on it for a week -and it sounds good

> so far about the increase in sounds -right on target to what most of

> us see. You should hear the first word in the next week or two -and

> then attempts at two word sentences within 2 to 3 months if your

> child is apraxic.

>

> One other thing however to keep in mind-since you will be seeing the

> neurodevelopmental doctor after starting Efalex -he may not pick up

> the apraxia or the soft signs -you may want to stop the Efalex until

> after the evaluation -and then start again. An apraxic child on

> Efalex will still require therapy -SLP and OT etc. however -they

> don't present as severe and for insurance reasons -it's best to have

> the evaluations before the EFAs. It's up to you. And also -if you

> stop -you can see if the positive and negative signs stop too -and

> see if they come back when you put him on again.

>

> About your other thought. Why do you suspect ADHD besides the stiff

> joints anyway? I have a child with ADHD and know nothing (and up to

> you have heard nothing) about stiff joints being a sign of ADHD -my

> son Dakota is so far from that actually -he looks more like a monkey

> the way he climbs and jumps off trees and sides of buildings etc.

> I'm sure one or more of the developmental pediatricians will have a

> comment on that.

>

> Re: Need some suggestions

> Fri Jun 6, 2003 10:11 am

>

>

> Hi Suzi!

>

> I completely relate to what you went through -I had posted a few

> years back (in the archives somewhere) a similar incident with

Tanner

> on an

> elevator when he was three and

> nonverbal. He was having a meltdown and was screaming crying (like

> someone was sticking pins in him as all of you with DSI kids know

> too well) and a woman came into the elevator and thought I had

beaten

> him. In

> fact we only do

> time outs and our children were never hit -but try to explain that

> while your child looks out of control to a complete stranger. She

> ignored me

> while I calmly tried to explain -and continued to try to find out

the

> truth from

> (then nonverbal and out of control crying) Tanner " Did somebody hit

> you

> honey...it's OK sweetheart you can tell me "

>

> Can't change what happened -and it may not ever happen again (only

> happened

> to me once) but you can get a note from your child's MD that you can

> carry and give out to those that stare or accuse you of abuse.

>

> In regards to the police - they will look at the safety of the

> child. They may want to know if there was abuse -but since that's

> going to be hard to prove -they will probably want to know where was

> the car when you had your daughter outside of it -and was there any

> danger of her running into traffic, or getting hit by another car.

>

> It's hard to know the right thing to do in all situations -if you

> left her in the car and in her rage she accidentally hurt herself

> somehow -some may blame you for leaving her alone in the car. There

> is no easy answers -just advice from the doctors together with mom

> and dad instincts -with age in our favor. In most cases -the older

> our kids are -the less likely this is to happen.

>

> Perhaps the next time your daughter acts this way -call the police

> yourself -and let them know what your daughter is doing and ask them

> what you should do. Perhaps the fear of a police car coming instead

> of daddy -and a talk from the officer about how it's wrong to throw

> things in the car while mommy is driving -and it's wrong to hurt

> others -will keep this from happening again -and keep the " Good

> Samaritans " away. The people who do intervene like this are not bad

> people -they are trying to help a child who they believe is being

> hurt by us -they just don't know what they don't know.

>

> This is why (again) we need awareness for our population

> http://www.cherab.org/information/LateTalkerPressRelease.html

> -the average person out there just does not have a clue what we go

> through -but fortunately or unfortunately -more and more do -because

> the amount of our multi faceted communication impaired children is

> not small

> -and it's continuing to grow.

>

> One day you may look back on this and laugh. Either way just keep

> thinking during the rough times -this too shall pass.

> ~~~~~~~~~~~~~~~~~end of archive

>

> =====

>