hi

[Guest guest]

Someone said something similar to me recently and this was my responce " I can

accept what he is, but as a parent I am suppose to help him get to his

potential. I don't determine his potential, I facilitate him getting there!!!

I accept this challenge for all my children not just my child on the spectrum! "

ebrischoux <ebrischoux@...> wrote: Beautifully said.

>

> As far as accepting my child as is, well I have a reply to that. I

will only accept JM as he is today. I know he is the best he can be

for the moment. I will not accept that he won't get any better

because he does everyday. Tomorrow I will accept him for what he is

tomorrow. Always looking forward. Each day can always hold

something new and never give up. His life depends on it!

>

> Blessings to all,

> in Cocoa

>

> Eileen McLennan <eileen_mclennan@y...> wrote:

> Hey, my little boy's doing so well lately its awesome but I'm

getting exactly the same as you - patronised to death by people who

haven't read anything about autism and know absolutely nothing about

it, and also by people who have, and should know better.

>

> Told today to accept 's condition. Given what I know now, and

the improvements I've seen, I haven't got that option.

>

> Still, a blessing is a blessing. I wish you many more.

>

> Eileen x

>

> <stephanie.scott@t...> wrote:

> I know, don't you just LOVE the mental disconnect between change in

diet and change in bahaviour/outcome?

> Re: Hi

>

>

> His teachers can not believe that

> this is the same boy but of course getting the " its a blessing

but

> not the diet changes " (do you think anyone would be offended here

if

> I called them idiots?! <-- just personal opinion)

>

>

>

>

[Guest guest]

Exactly!!! Great reply . If our children had cancer they wouldn't be

wondering why we are trying so hard to help them. I don't understand why in the

world we are expected to just sit here and do nothing. That thought never

entered my head.

in Cocoa (on her soapbox again!)

Have a Happy Tuesday (we are in pinworm world today... and a washing we will

go...!)

Primer <sprimer1@...> wrote:

Someone said something similar to me recently and this was my responce " I can

accept what he is, but as a parent I am suppose to help him get to his

potential. I don't determine his potential, I facilitate him getting there!!!

I accept this challenge for all my children not just my child on the spectrum! "

ebrischoux <ebrischoux@...> wrote: Beautifully said.

>

> As far as accepting my child as is, well I have a reply to that. I

will only accept JM as he is today. I know he is the best he can be

for the moment. I will not accept that he won't get any better

because he does everyday. Tomorrow I will accept him for what he is

tomorrow. Always looking forward. Each day can always hold

something new and never give up. His life depends on it!

>

> Blessings to all,

> in Cocoa

>

> Eileen McLennan <eileen_mclennan@y...> wrote:

> Hey, my little boy's doing so well lately its awesome but I'm

getting exactly the same as you - patronised to death by people who

haven't read anything about autism and know absolutely nothing about

it, and also by people who have, and should know better.

>

> Told today to accept 's condition. Given what I know now, and

the improvements I've seen, I haven't got that option.

>

> Still, a blessing is a blessing. I wish you many more.

>

> Eileen x

>

> <stephanie.scott@t...> wrote:

> I know, don't you just LOVE the mental disconnect between change in

diet and change in bahaviour/outcome?

> Re: Hi

>

>

> His teachers can not believe that

> this is the same boy but of course getting the " its a blessing

but

> not the diet changes " (do you think anyone would be offended here

if

> I called them idiots?! <-- just personal opinion)

>

>

>

>

[Guest guest]

I will only accept JM as he is today. I know he is the best he can

be for the moment. I will not accept that he won't get any better

because he does everyday. Tomorrow I will accept him for what he is

tomorrow.

Nicely put.

My family is all over the map when it comes to autism/biomed -- some

really encouraging and helpful, others silent, others hostile. One

thing that's helped a LOT is passing around Kirby's " Evidence of

Harm " . My 80 yo father finally gets it!

Nell

[Guest guest]

Gheeze: Must be the day. you really hit home for alot of

people with your wonderful words. Having one of those days myself and

I reread your post to remind myself to take it one day at a time. Dr.

appt for the dam urination situation. Came back negative again. I

proceeded to tell his primary what we were doing and he wasnt up on

pyroluria at all. Was concerned with the biomedical things we are

doing. Why did I even say anything. What the heck did I expect. I

thought about something with the OCD increasing tho. Could be because

I weaned him off the Trileptal which the Neuro knows about. Primary

gave me a script for ultrasound for kidneys but told me it was no rush

to have done. Going for amalgam removal tomorrow and I am a little

nervous about that I guess. I guess I have to keep reminding myself

that I only started the Pfeiffer protocol 1 month ago. Seems longer!

Anyway , thanks for the words. I guess you didnt realize the

cords you hit with them. And I too go thru the crap with anyone that

does not live with this, except my Mom. Eileen

> I will only accept JM as he is today. I know he is the best he can

> be for the moment. I will not accept that he won't get any better

> because he does everyday. Tomorrow I will accept him for what he is

> tomorrow.

>

> Nicely put.

>

> My family is all over the map when it comes to autism/biomed -- some

> really encouraging and helpful, others silent, others hostile. One

> thing that's helped a LOT is passing around Kirby's " Evidence of

> Harm " . My 80 yo father finally gets it!

>

> Nell

[Guest guest]

Eileen

Just a thought- does his urine smell like ammonia or is it frothy? (If

he doesn't flush, maybe you would see this). My son's urine does smell

like ammonia and is frothy-bubbly- it's because he eat too much

protein I think- anyway thought about that if maybe your son doesn't

drink a lot of water or something, maybe it burns?? Take care Rose

[Guest guest]

Hi Rose: Thanks for your reply. It is frothy sometimes but not all.

It doesnt smell like ammonia that I can tell. He does like protein.

Actually he is not drinking as much as he used to. Eileen

> Eileen

> Just a thought- does his urine smell like ammonia or is it frothy?

(If

> he doesn't flush, maybe you would see this). My son's urine does

smell

> like ammonia and is frothy-bubbly- it's because he eat too much

> protein I think- anyway thought about that if maybe your son doesn't

> drink a lot of water or something, maybe it burns?? Take care Rose

[Guest guest]

Eileen

You would probably be able to tell about the ammonia smell. Is it dark

yellow or like water. If it's dark, then it's concentrated and

hopefully you could get him to drink more. Maybe guys pee when they're

older is like that..LOL.. don't have much experience in this..(just

husband and son.. ) Take care Rose

[Guest guest]

, I am glad you appreciated my thoughts. <borrows the soapbox> I also try

to never do what is expected.

Bolling <lvchefmel@...> wrote:Exactly!!! Great reply . If

our children had cancer they wouldn't be wondering why we are trying so hard to

help them. I don't understand why in the world we are expected to just sit here

and do nothing. That thought never entered my head.

in Cocoa (on her soapbox again!)

Have a Happy Tuesday (we are in pinworm world today... and a washing we will

go...!)

Primer <sprimer1@...> wrote:

Someone said something similar to me recently and this was my responce " I can

accept what he is, but as a parent I am suppose to help him get to his

potential. I don't determine his potential, I facilitate him getting there!!!

I accept this challenge for all my children not just my child on the spectrum! "

ebrischoux <ebrischoux@...> wrote: Beautifully said.

>

> As far as accepting my child as is, well I have a reply to that. I

will only accept JM as he is today. I know he is the best he can be

for the moment. I will not accept that he won't get any better

because he does everyday. Tomorrow I will accept him for what he is

tomorrow. Always looking forward. Each day can always hold

something new and never give up. His life depends on it!

>

> Blessings to all,

> in Cocoa

>

> Eileen McLennan <eileen_mclennan@y...> wrote:

> Hey, my little boy's doing so well lately its awesome but I'm

getting exactly the same as you - patronised to death by people who

haven't read anything about autism and know absolutely nothing about

it, and also by people who have, and should know better.

>

> Told today to accept 's condition. Given what I know now, and

the improvements I've seen, I haven't got that option.

>

> Still, a blessing is a blessing. I wish you many more.

>

> Eileen x

>

> <stephanie.scott@t...> wrote:

> I know, don't you just LOVE the mental disconnect between change in

diet and change in bahaviour/outcome?

> Re: Hi

>

>

> His teachers can not believe that

> this is the same boy but of course getting the " its a blessing

but

> not the diet changes " (do you think anyone would be offended here

if

> I called them idiots?! <-- just personal opinion)

>

>

>

>

[Guest guest]

Thanks Rose-Too Funny. Yes it is dark yellow in morning, but this

seems to happen more later in the day. THen it is clearer. I am going

o try and get him to drink more water and see what happens. Eileen

> Eileen

> You would probably be able to tell about the ammonia smell. Is it

dark

> yellow or like water. If it's dark, then it's concentrated and

> hopefully you could get him to drink more. Maybe guys pee when

they're

> older is like that..LOL.. don't have much experience in this..(just

> husband and son.. ) Take care Rose

[Guest guest]

That is a great idea. That would make great Father's Day gifts wouldn't it?!

Thanks for the great idea!

in Cocoa

lanellici <lanellici@...> wrote:

I will only accept JM as he is today. I know he is the best he can

be for the moment. I will not accept that he won't get any better

because he does everyday. Tomorrow I will accept him for what he is

tomorrow.

Nicely put.

My family is all over the map when it comes to autism/biomed -- some

really encouraging and helpful, others silent, others hostile. One

thing that's helped a LOT is passing around Kirby's " Evidence of

Harm " . My 80 yo father finally gets it!

Nell

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

[Guest guest]

Hi Marcy. Welcome. I have two sons on the spectrum. I applied for SSI a

while back for my younger son. My husband was in a transition as far as jobs

go. We did qualify, just barely. I believe the cutoff is around 40,000 a

year (household income) depending on your state. We received about $120 a

month in benefit. I used it to pay for private speech therapy, not covered by

any insurances. Once my husband's salary began to increase, the SSI was

stopped. Here is a link that gives a little bit more inform

_Social Security Disability Insurance_

(http://www.kidsource.com/nfpa/social.html) ation. Pam

[Guest guest]

,

What type of therapy does your child get? Can you give us an

example. It could be that the SLP is not using the right techniques.

Have you had him evaluated by a developmental ped yet? He is also

entitled to be evaluated by the school system. If he qualifies and

it sounds like he would they would provide services.

Hang in there and advocate for your child. Get the book " The Late

Talker " by Dr. AGin and

[Guest guest]

Hi and welcome!

Based on what you wrote here some of what I'm writing back could be

off. But in a nutshell it sounds like you don't have a good SLP

working with your son for many reasons.

It's kind of hard to diagnose verbal apraxia in a child that is

completely nonverbal. You could diagnosed oral apraxia in a

nonverbal child and then the odds are almost in every case the child

will also have verbal apraxia. For a nonverbal child best they

could do is diagnose " suspected apraxia " and then treat the child as

such. And also, therapy approaches should have changed...did they?

But even if your child isn't apraxic therapy approaches and even

therapists should have changed after that much time with no progres

or diagnosis.

When you say he's been in speech therapy for 2 years -is that really

how long? If your child is 3 now -was he close to 12 months when he

started therapy? If so -what was the reason for it at that age?

Was it the same therapist all this time while your child remained

nonverbal? If so -who has been paying for this speech therapist?

Is it through Early Intervention through your state?

Either way -still nonverbal after that much therapy -overdue and

time for another therapist and a second opinion. I wouldn't give it

more than 3 months personally with no progress -but rule of thumb 6

months max. Also -has your child been evaluated for any

occupational therapy needs?

Also, if apraxia is suspected it's advisable to see a neuroMD to

confirm or rule out diagnosis and any soft signs and to help you

advocate with insurance and school for appropriate therapies.

Here's a new member archive to hopefully help more. Again -what

I've said above is based on what you wrote. Perhaps you left out

some details and this SLP isn't as horrid and money sucking in spite

of not being of any apparent help at all as he/she sounds. But if

it is what it is -then it's time to give that SLP the boot today -

and give your child a fighting chance with one who has a clue.

There's more below on how to find support and resources -but if you

post back with what state you are in -parents and professionals from

your area may be able to offer more local support.

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)

I would also have at least one private " out of pocket " (if possible)

exam with a knowledgeable speech pathologist as well. This SLP can

coordinate with your child's MD, and school therapist and other

professionals, and again be there to assist in a therapeutic plan,

help set goals and oversee your child's development over the years

if needed.

Networking with parents of other speech-impaired children is also

possibly one of the best moves you could make in your child's

recovery. Others will steer you to the " right " professionals and

programs in your area -and you won't feel so alone. I would HIGHLY

recommend joining a whose goal is to unite parents and

professionals. This group

/ is through CHERAB

http://www.cherab.org

The speechville website also has message boards so that you can talk

to other parents on particular topics.

http://www.speech-express.com/boards/

Check your state resources at Speechville to find local support

groups and resources.

http://www.speech-express.com/regional-resources.html

http://www.speech-express.com/communication-station/regional-support-groups.html

(BTW -for anyone who is either running or starting a support group -

due to The Late Talker book and the many who will see your group,

please make sure your info is up at this website and accurate)

For all your other questions including what type of testing -just

read " The Late Talker " . (Nike said 'Just Do It!' -I say 'Just Read

It!') At Amazon.com you can even start today and read sample pages

of the book online!

" The first book to show parents how to tell whether a child has a

speech

delay -or a more serious speech disorder

Every parent eagerly awaits the day his or her child will speak for

the fist

time. For millions of mothers and fathers, however, anticipation

turns to

anxiety when those initial, all-important words are a long time

coming. Many

worried parents are reassured that their child is " just a late

talker, " but

unfortunately, that is not always the case. Co-author

[Guest guest]

Hi. my name is nan, my daughter is 4 1/2 years old, and she doesn't talk hardly

at all either. she too has been in speach for almost 1 1/2 years, i don't think

it's doing much either. we do alot of talking to her at home, i try not to give

her things unless she says the name of it, she was never diagnosed with apraxia,

but she had problems concerning vaccines, she was starting to talk until her 9

month shots. i truly believe that speach problems with children really have to

do with the shots they receive. if you want to talk sometime let me know. i

would love to hear all about your son, and i will share my daughters story with

you. have a great day. nan

myloveisyours_22 <myloveisyours_22@...> wrote:Hi I am and my son

was diagnosed 3 weeks ago with verbal

apraxia. He is 3 years old and he doesnt talk. He has been doing

speech therapy for 2 years now and it is not working. I seen this

group and figured maybe I could find other parents with children with

apraxia thatr might be able to help me to understand it better.

[Guest guest]

Hi Nan Hi ,

My name is Dawn I have a 4 1/2 year old too. He didn't start talking until

he was three. He had speech therapy until he was three. what really helped

him was Preschool. He is a chatter box now. I just wanted to say Hi and let

you know your not alone. If you want to talk just let me know. He has never

been diagnosed with apraxia, but as a slow talker, speech delay.

Dawn Blackerby

-- Re: [ ] Hi

Hi. my name is nan, my daughter is 4 1/2 years old, and she doesn't talk

hardly at all either. she too has been in speach for almost 1 1/2 years, i

don't think it's doing much either. we do alot of talking to her at home, i

try not to give her things unless she says the name of it, she was never

diagnosed with apraxia, but she had problems concerning vaccines, she was

starting to talk until her 9 month shots. i truly believe that speach

problems with children really have to do with the shots they receive. if you

want to talk sometime let me know. i would love to hear all about your son,

and i will share my daughters story with you. have a great day. nan

myloveisyours_22 <myloveisyours_22@...> wrote:Hi I am and my

son was diagnosed 3 weeks ago with verbal

apraxia. He is 3 years old and he doesnt talk. He has been doing

speech therapy for 2 years now and it is not working. I seen this

group and figured maybe I could find other parents with children with

apraxia thatr might be able to help me to understand it better.

[Guest guest]

Hi Dawn and Nan,

I have a six year old daughter with apraxia and a four year old daughter

diagnosed with a developmental language delay. My six year old is still

struggling with her speech, but it is getting better. She will start 1st grade

in a special class in our district. She was in an out of district placement for

kindergarten. Our four year old is making great progress and will be integrated

into a regular preschool this year. She attended the same special needs

preschool that our six year old did. The special needs preschool selects six

children to be integrated into a local nursery school and they provide a special

education teacher, speech therapist, OT and PT to this school. One of her

classmates was also selected for this class, so at least she will know someone

else in her class.

If either of you have questions for me, let me know. I have been dealing with

early intervention, CPSE and CSE for almost four years now. I might be starting

the process again with my 21 month old. She can use a lot of sounds, but doesn't

use many words yet. We also have a daughter who will turn 8 on Tuesday. She is a

motor mouth and has been in regular classes. She did not attend preschool and is

doing well in elementary school.

I would be more than happy to talk to both of you via e-mail. Have a great

weekend.

and Dawn <richardanddawn@...> wrote:

Hi Nan Hi ,

My name is Dawn I have a 4 1/2 year old too. He didn't start talking until

he was three. He had speech therapy until he was three. what really helped

him was Preschool. He is a chatter box now. I just wanted to say Hi and let

you know your not alone. If you want to talk just let me know. He has never

been diagnosed with apraxia, but as a slow talker, speech delay.

Dawn Blackerby

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

Sell on Auctions - No fees. Bid on great items.

[Guest guest]

I am in New York and Bradley was diagnosed with apraxia by a someone in the

pediatric development clinic. I think maybe my timing was a bit off but not by a

whole lot he was about 18 months old when he was evaluated and determined to

have a severe speech delay. I have had a really rough time with his doctor

making any referals for us to see a neourologist or anyone else for that matter.

It took us a long time to get the pediatrician to send us for a hearing test on

him and he passed that, but he had fluid build up in his ears. The specialist

that they finally sent us to placed tubes in his ears, and said that that should

help him be able to pick up on his speech because he could bot hear so he

couldnt talk, however, it did not help at all. The specialist is the one who

ordered the speech evaluation. and at 18 months he only came out to be at a 6

month level. Earkly Intervention started working with him right away. He did

start to make a small progress, until he had his 3rd seizure

which set him back and he has not yet moved a long yet. His progress was not

too big, but he could at least make sounds and that was something for me

considering we were lucky if he could point to anything to show us what he

wanted. He worked with that speech therapist from 18 months until he just turned

3 in march and went into the 3-5 preschool program. They gave him a new

therapist and she is wonderful with him. He loves her and looks forward to her

visits. She, however, does not believe he has apraxia. It was his other

therapist that even told us about the possibility. Still even with the diagnosis

from the specialist, his doctor wont give us the referal for the neurological

testing to see if this apraxia could have anything to do with his seizures so we

have just switched pediatricians. Bradley really does try very hard to talk he

just cant . He comes out with all of these sounds that you can not understand

what they are. He uses all kinds of gestures and signals to let you

know what he wants. He gets so frustrated that we dont know what he is trying

to get across to us that he has severe behavioral problems that are follwoed by

severe anger. Sometimes I wonder if some of the signals he is giving us are some

kind of sign language, but I am as far lost on sign that if it were to hit me

int he face I wouldnt know it or even where he learned it from. When he does use

words that could be made out into a possible word, it sounds like he leaves off

all the beginning constanant sounds and adds something to the ending. I dont

know enough about the whole apraxia enough to even begin to explain any of it I

just know what the doctors have told me that he has. I do, however, know that by

3 years old kids should be at least saying mommy and daddy and he does not. My 1

1/2 year old has way more vocabulary skills than he does. I'm sorry I cant

answer your questions at this time but thats why I am looking is for help to get

some answers so I can at least understand

some of it myself.

Hi and welcome!

Based on what you wrote here some of what I'm writing back could be

off. But in a nutshell it sounds like you don't have a good SLP

working with your son for many reasons.

It's kind of hard to diagnose verbal apraxia in a child that is

completely nonverbal. You could diagnosed oral apraxia in a

nonverbal child and then the odds are almost in every case the child

will also have verbal apraxia. For a nonverbal child best they

could do is diagnose " suspected apraxia " and then treat the child as

such. And also, therapy approaches should have changed...did they?

But even if your child isn't apraxic therapy approaches and even

therapists should have changed after that much time with no progres

or diagnosis.

When you say he's been in speech therapy for 2 years -is that really

how long? If your child is 3 now -was he close to 12 months when he

started therapy? If so -what was the reason for it at that age?

Was it the same therapist all this time while your child remained

nonverbal? If so -who has been paying for this speech therapist?

Is it through Early Intervention through your state?

Either way -still nonverbal after that much therapy -overdue and

time for another therapist and a second opinion. I wouldn't give it

more than 3 months personally with no progress -but rule of thumb 6

months max. Also -has your child been evaluated for any

occupational therapy needs?

Also, if apraxia is suspected it's advisable to see a neuroMD to

confirm or rule out diagnosis and any soft signs and to help you

advocate with insurance and school for appropriate therapies.

Here's a new member archive to hopefully help more. Again -what

I've said above is based on what you wrote. Perhaps you left out

some details and this SLP isn't as horrid and money sucking in spite

of not being of any apparent help at all as he/she sounds. But if

it is what it is -then it's time to give that SLP the boot today -

and give your child a fighting chance with one who has a clue.

There's more below on how to find support and resources -but if you

post back with what state you are in -parents and professionals from

your area may be able to offer more local support.

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)

I would also have at least one private " out of pocket " (if possible)

exam with a knowledgeable speech pathologist as well. This SLP can

coordinate with your child's MD, and school therapist and other

professionals, and again be there to assist in a therapeutic plan,

help set goals and oversee your child's development over the years

if needed.

Networking with parents of other speech-impaired children is also

possibly one of the best moves you could make in your child's

recovery. Others will steer you to the " right " professionals and

programs in your area -and you won't feel so alone. I would HIGHLY

recommend joining a whose goal is to unite parents and

professionals. This group

/ is through CHERAB

http://www.cherab.org

The speechville website also has message boards so that you can talk

to other parents on particular topics.

http://www.speech-express.com/boards/

Check your state resources at Speechville to find local support

groups and resources.

http://www.speech-express.com/regional-resources.html

http://www.speech-express.com/communication-station/regional-support-groups.html

(BTW -for anyone who is either running or starting a support group -

due to The Late Talker book and the many who will see your group,

please make sure your info is up at this website and accurate)

For all your other questions including what type of testing -just

read " The Late Talker " . (Nike said 'Just Do It!' -I say 'Just Read

It!') At Amazon.com you can even start today and read sample pages

of the book online!

" The first book to show parents how to tell whether a child has a

speech

delay -or a more serious speech disorder

Every parent eagerly awaits the day his or her child will speak for

the fist

time. For millions of mothers and fathers, however, anticipation

turns to

anxiety when those initial, all-important words are a long time

coming. Many

worried parents are reassured that their child is " just a late

talker, " but

unfortunately, that is not always the case. Co-author

[Guest guest]

Hi Marcy,

In response to your questions about SSI, I have been trying for 3

years now to obtain SSI for my son. I think it's much easier when you

have a confirmed diagnosis though. When we applied all I had was ADHD

as a diagnosis. After pushing for awhile, and having Regional Center

provide testing, the docs are now in agreement. There are , however,

income limits for SSI. Hope this helps you.

Larraine

I

> have a particular question for all you hard working parents out

> there. I am preparing to talk to an Aspergers Support group and one

> of the areas of interest for the parents is the possibility to apply

> for SSI benifits. I was hoping that some of you would share your

> stories if you have any. I want to hear all aspects so that I can

> best help these parents. I appreciate you taking time to read this

> and I am looking forward to sharing, and supporting eachother.

>

> BLessings,

> Marcy

[Guest guest]

Hello,

I am from MI as well and I live in a very bad school district when it

comes to children with disabilities, my son's psychologist even

recommend that I continue to homeschool until I move into a better

district. He told me that the parents that already have children in the

PS were fighting to get the children the help that they need, he did

give me info on different program that I could use to take my son to

like social skills training, camps, SID classes etc.. at really

reasonable prices.

I have applied for SSI for my son and after about 3 1/2 months ago and I

just recieved a check in the mail Friday. When you go to the SSI

building this are some of the things you should take:

Child Birth Certificate

Doctor Info estimated dates, name, address,

What makes you child different than others his/her age

Check stubs- I had to bring on 2nd visit

Copy of child evaluation of dx- speeds things along or you will have to

see one of there doctors but they will pay the cost its just inconvient

Rental/Morgage payment info 2nd appointment

This is all I can remember right know but you can go on www.ssi.gov I

believe and download a lot of the forms off line and be a step ahead

before you go. I hope this helps someone and if you get SSI you also get

Medical insurance, you can also apply for food stamps as well I recieve

both and work you just have to make sure your income does not go over a

certain amount each month.

-- In , " smlancaster " <smlancaster@y...>

wrote:

> Hello,

>

> I am new to the group today. I am a mom of a 5 yr old with high

> funncionting autism. I live in MI with my husband and my 7 yr old

> son. (I know what was I thinking having the boys 20 mo apart LOL). I

> have a particular question for all you hard working parents out

> there. I am preparing to talk to an Aspergers Support group and one

> of the areas of interest for the parents is the possibility to apply

> for SSI benifits. I was hoping that some of you would share your

> stories if you have any. I want to hear all aspects so that I can

> best help these parents. I appreciate you taking time to read this

> and I am looking forward to sharing, and supporting eachother.

>

> BLessings,

> Marcy

[Guest guest]

,

Welcome to the group. You will learn so much from all the caring and wonderful

parents here. This place has been a God-send to me.

I am new in this process as well, but one thing that has really helped in my

home was teaching my son sign language. There are some great DVDs called

" Signing Time " that you can order on Amazon.com. I didn't know any sign

language myself until I sat down and watched the videos with my my son. We have

since ordered all 6 volumes. My son loves to watch them and as a result now

uses about 40+ signs and has begun to put two signs together to form sentences

such as " more crackers " . We started with the videos when he was 18 mos. old and

he just turned 21 mos. He picked up on the sign language quickly and it has

greatly reduced his frustration, as well as ours. It sounds like your son is

trying to use gestures, so maybe sign language would be something that gives him

a " voice " while he is going through speech therapy and learning how to speak

verbally.

Best wishes to you,

Noelle

brandy marsh <myloveisyours_22@...> wrote:

I am in New York and Bradley was diagnosed with apraxia by a someone in the

pediatric development clinic. I think maybe my timing was a bit off but not by a

whole lot he was about 18 months old when he was evaluated and determined to

have a severe speech delay. I have had a really rough time with his doctor

making any referals for us to see a neourologist or anyone else for that matter.

It took us a long time to get the pediatrician to send us for a hearing test on

him and he passed that, but he had fluid build up in his ears. The specialist

that they finally sent us to placed tubes in his ears, and said that that should

help him be able to pick up on his speech because he could bot hear so he

couldnt talk, however, it did not help at all. The specialist is the one who

ordered the speech evaluation. and at 18 months he only came out to be at a 6

month level. Earkly Intervention started working with him right away. He did

start to make a small progress, until he had his 3rd seizure

which set him back and he has not yet moved a long yet. His progress was not too

big, but he could at least make sounds and that was something for me considering

we were lucky if he could point to anything to show us what he wanted. He worked

with that speech therapist from 18 months until he just turned 3 in march and

went into the 3-5 preschool program. They gave him a new therapist and she is

wonderful with him. He loves her and looks forward to her visits. She, however,

does not believe he has apraxia. It was his other therapist that even told us

about the possibility. Still even with the diagnosis from the specialist, his

doctor wont give us the referal for the neurological testing to see if this

apraxia could have anything to do with his seizures so we have just switched

pediatricians. Bradley really does try very hard to talk he just cant . He comes

out with all of these sounds that you can not understand what they are. He uses

all kinds of gestures and signals to let you

know what he wants. He gets so frustrated that we dont know what he is trying to

get across to us that he has severe behavioral problems that are follwoed by

severe anger. Sometimes I wonder if some of the signals he is giving us are some

kind of sign language, but I am as far lost on sign that if it were to hit me

int he face I wouldnt know it or even where he learned it from. When he does use

words that could be made out into a possible word, it sounds like he leaves off

all the beginning constanant sounds and adds something to the ending. I dont

know enough about the whole apraxia enough to even begin to explain any of it I

just know what the doctors have told me that he has. I do, however, know that by

3 years old kids should be at least saying mommy and daddy and he does not. My 1

1/2 year old has way more vocabulary skills than he does. I'm sorry I cant

answer your questions at this time but thats why I am looking is for help to get

some answers so I can at least understand

some of it myself.

Hi and welcome!

[Guest guest]

If you have a psychiatrist Dx for your child SSI will consider that instead of

their own " psychologist " making the Dx. I also got my son Dx by the state

division of disabilities too.

If you take those steps first it will make SSI easier. Lastly not all states

offer SSI with income limitations. I know NJ does but Pa doesn;t .. if your a

millionaire living in Pa. you'd get SSI... NJ uses income guidelines... if you

qualify for food stamp you'd get some SSI. If you're like I when child support

comes and goes... SS will not keep track for you or assist (even though they

have access to state obtained support). You must keep them abreast of your

income monthly.

Good luck

in NJ

( ) Re: Hi

Hi Marcy,

In response to your questions about SSI, I have been trying for 3

years now to obtain SSI for my son. I think it's much easier when you

have a confirmed diagnosis though. When we applied all I had was ADHD

as a diagnosis. After pushing for awhile, and having Regional Center

provide testing, the docs are now in agreement. There are , however,

income limits for SSI. Hope this helps you.

Larraine

I

> have a particular question for all you hard working parents out

> there. I am preparing to talk to an Aspergers Support group and one

> of the areas of interest for the parents is the possibility to apply

> for SSI benifits. I was hoping that some of you would share your

> stories if you have any. I want to hear all aspects so that I can

> best help these parents. I appreciate you taking time to read this

> and I am looking forward to sharing, and supporting eachother.

>

> BLessings,

> Marcy

[Guest guest]

Hi ,

Where in New York? I live in Westchester & can lead you to some good

people if you are nearby.

> I am in New York and Bradley was diagnosed with apraxia by a

someone in the pediatric development clinic. I think maybe my timing

was a bit off but not by a whole lot he was about 18 months old when

he was evaluated and determined to have a severe speech delay. I

have had a really rough time with his doctor making any referals for

us to see a neourologist or anyone else for that matter. It took us

a long time to get the pediatrician to send us for a hearing test on

him and he passed that, but he had fluid build up in his ears. The

specialist that they finally sent us to placed tubes in his ears,

and said that that should help him be able to pick up on his speech

because he could bot hear so he couldnt talk, however, it did not

help at all. The specialist is the one who ordered the speech

evaluation. and at 18 months he only came out to be at a 6 month

level. Earkly Intervention started working with him right away. He

did start to make a small progress, until he had his 3rd seizure

> which set him back and he has not yet moved a long yet. His

progress was not too big, but he could at least make sounds and that

was something for me considering we were lucky if he could point to

anything to show us what he wanted. He worked with that speech

therapist from 18 months until he just turned 3 in march and went

into the 3-5 preschool program. They gave him a new therapist and

she is wonderful with him. He loves her and looks forward to her

visits. She, however, does not believe he has apraxia. It was his

other therapist that even told us about the possibility. Still even

with the diagnosis from the specialist, his doctor wont give us the

referal for the neurological testing to see if this apraxia could

have anything to do with his seizures so we have just switched

pediatricians. Bradley really does try very hard to talk he just

cant . He comes out with all of these sounds that you can not

understand what they are. He uses all kinds of gestures and signals

to let you

> know what he wants. He gets so frustrated that we dont know what

he is trying to get across to us that he has severe behavioral

problems that are follwoed by severe anger. Sometimes I wonder if

some of the signals he is giving us are some kind of sign language,

but I am as far lost on sign that if it were to hit me int he face I

wouldnt know it or even where he learned it from. When he does use

words that could be made out into a possible word, it sounds like he

leaves off all the beginning constanant sounds and adds something to

the ending. I dont know enough about the whole apraxia enough to

even begin to explain any of it I just know what the doctors have

told me that he has. I do, however, know that by 3 years old kids

should be at least saying mommy and daddy and he does not. My 1 1/2

year old has way more vocabulary skills than he does. I'm sorry I

cant answer your questions at this time but thats why I am looking

is for help to get some answers so I can at least understand

> some of it myself.

>

>

>

> Hi and welcome!

>

> Based on what you wrote here some of what I'm writing back could

be

> off. But in a nutshell it sounds like you don't have a good SLP

> working with your son for many reasons.

[Guest guest]

I am near Olean NY about 1 1/2 hours south of Buffalo.

susan3959 <susan3959@...> wrote:

Hi ,

Where in New York? I live in Westchester & can lead you to some good

people if you are nearby.

> I am in New York and Bradley was diagnosed with apraxia by a

someone in the pediatric development clinic. I think maybe my timing

was a bit off but not by a whole lot he was about 18 months old when

he was evaluated and determined to have a severe speech delay. I

have had a really rough time with his doctor making any referals for

us to see a neourologist or anyone else for that matter. It took us

a long time to get the pediatrician to send us for a hearing test on

him and he passed that, but he had fluid build up in his ears. The

specialist that they finally sent us to placed tubes in his ears,

and said that that should help him be able to pick up on his speech

because he could bot hear so he couldnt talk, however, it did not

help at all. The specialist is the one who ordered the speech

evaluation. and at 18 months he only came out to be at a 6 month

level. Earkly Intervention started working with him right away. He

did start to make a small progress, until he had his 3rd seizure

> which set him back and he has not yet moved a long yet. His

progress was not too big, but he could at least make sounds and that

was something for me considering we were lucky if he could point to

anything to show us what he wanted. He worked with that speech

therapist from 18 months until he just turned 3 in march and went

into the 3-5 preschool program. They gave him a new therapist and

she is wonderful with him. He loves her and looks forward to her

visits. She, however, does not believe he has apraxia. It was his

other therapist that even told us about the possibility. Still even

with the diagnosis from the specialist, his doctor wont give us the

referal for the neurological testing to see if this apraxia could

have anything to do with his seizures so we have just switched

pediatricians. Bradley really does try very hard to talk he just

cant . He comes out with all of these sounds that you can not

understand what they are. He uses all kinds of gestures and signals

to let you

> know what he wants. He gets so frustrated that we dont know what

he is trying to get across to us that he has severe behavioral

problems that are follwoed by severe anger. Sometimes I wonder if

some of the signals he is giving us are some kind of sign language,

but I am as far lost on sign that if it were to hit me int he face I

wouldnt know it or even where he learned it from. When he does use

words that could be made out into a possible word, it sounds like he

leaves off all the beginning constanant sounds and adds something to

the ending. I dont know enough about the whole apraxia enough to

even begin to explain any of it I just know what the doctors have

told me that he has. I do, however, know that by 3 years old kids

should be at least saying mommy and daddy and he does not. My 1 1/2

year old has way more vocabulary skills than he does. I'm sorry I

cant answer your questions at this time but thats why I am looking

is for help to get some answers so I can at least understand

> some of it myself.

>

>

>

> Hi and welcome!

>

> Based on what you wrote here some of what I'm writing back could

be

> off. But in a nutshell it sounds like you don't have a good SLP

> working with your son for many reasons.

[Guest guest]

Thank you Kesha,

I will make sure I get all those things down for the families. I am

curious what district you live in. I live near Mt. Pleasant and we

have nothing for children with disabilities in our area. Most of

the time they push the chidren into segregated class rooms here. I

had a bit of a battle to get my son into a general ed kindergarten

class. But the law is on my side!!!!!!!! thank you again for the

information.

Marcy

> > Hello,

> >

> > I am new to the group today. I am a mom of a 5 yr old with high

> > funncionting autism. I live in MI with my husband and my 7 yr

old

> > son. (I know what was I thinking having the boys 20 mo apart

LOL). I

> > have a particular question for all you hard working parents out

> > there. I am preparing to talk to an Aspergers Support group and

one

> > of the areas of interest for the parents is the possibility to

apply

> > for SSI benifits. I was hoping that some of you would share

your

> > stories if you have any. I want to hear all aspects so that I

can

> > best help these parents. I appreciate you taking time to read

this

> > and I am looking forward to sharing, and supporting eachother.

> >

> > BLessings,

> > Marcy

[Guest guest]

We are a state with income guidlines, I will let them know about

the independant psych Dx. I didn't know how much that had a bearing

on it. thank you,

Marcy

> If you have a psychiatrist Dx for your child SSI will consider

that instead of their own " psychologist " making the Dx. I also got

my son Dx by the state division of disabilities too.

>

> If you take those steps first it will make SSI easier. Lastly not

all states offer SSI with income limitations. I know NJ does but Pa

doesn;t .. if your a millionaire living in Pa. you'd get SSI... NJ

uses income guidelines... if you qualify for food stamp you'd get

some SSI. If you're like I when child support comes and goes... SS

will not keep track for you or assist (even though they have access

to state obtained support). You must keep them abreast of your

income monthly.

>

> Good luck

> in NJ

> ( ) Re: Hi

>

>

> Hi Marcy,

>

> In response to your questions about SSI, I have been trying for

3

> years now to obtain SSI for my son. I think it's much easier

when you

> have a confirmed diagnosis though. When we applied all I had

was ADHD

> as a diagnosis. After pushing for awhile, and having Regional

Center

> provide testing, the docs are now in agreement. There are ,

however,

> income limits for SSI. Hope this helps you.

>

> Larraine

>

>

> I

> > have a particular question for all you hard working parents

out

> > there. I am preparing to talk to an Aspergers Support group

and one

> > of the areas of interest for the parents is the possibility to

apply

> > for SSI benifits. I was hoping that some of you would share

your

> > stories if you have any. I want to hear all aspects so that I

can

> > best help these parents. I appreciate you taking time to read

this

> > and I am looking forward to sharing, and supporting eachother.

> >

> > BLessings,

> > Marcy

>

>

>

>

>