Re: Receptive vs. Expressive Language for Apraxia/and about Warren

August 25, 2008

I am so lost right now to get Alyssa the right help. I can only find one prompt

therapist locally and she has already seen alyssa for almost 2yrs and we mutal

agreed alyssa needed a changel thats when e switched to focus more on augmentive

comm. since she has little to no verbal skills. i jus feel like where do i go

from here? and i bought omega 3 is this right n vitamin E? and we r thinkn about

gluten and casien free diet any thoughts?

August 25, 2008

Liz even outside of vision if not tested appropriately many apraxic

children test low due to inappropriate tests and/or inexperienced

evaluators. Then again in regards to vision going back to that one

type of dyspraxia -there is that one type that affects

vision " constructional dyspraxia

Problems with establishing spatial relationships - for instance being

able to accurately position or move objects from one place to another "

And about this guy Warren who may have constructional dyspraxia -I've

spoken to a few " kids " who are now grown up and yes in some cases

they hold anger. Before everyone jumps on someone who could be your

child 20 years down the road please let's not assume he's out to

steal everyone's 30 bucks or that he's making up his inability to see

in 3D. Whatever he's gone through or is going through in some way or

another he fell through the cracks if he didn't get diagnosed until

19 and since then he's trying to reach out to help others.

As far as rebelling against doing so much you can read about that

from high functioning autistics who are angry people look for cures

for autism. In some small ways I see it already in my 12 year old

Tanner in that these kids get to a point that they accept the way

they are -even like the way they are. And yes for those that did not

receive the appropriate therapy while younger there is anger. Look

at Barbara Walters -some of you may not know this but she was in

speech therapy much of her childhood. I know a well known SLP who

reached out to her through one of her staff that they knew mutually

and Barbara (allegedly) said " I want nothing to do with SLPs. I

spent years doing what they told me to do and I still have speech

issues " OK the SLP was Sara Rosenthal CCC SLP and she

offered to help -that's all. Just offered to help.

Does that make Barbara a meanie? No -it was her inner child talking. All

of you saying stuff about this guy Warren (who probably would rebel

against me too) are parents. Who knows in some way perhaps he is

jealous and wishes his parents did more for him. I mean one would

wonder wouldn't one? Try not to look at him as an adult. He is a

child that fell through the cracks and now he's trying to make

something of himself. The last thing a child that is now an adult

with dyspraxia needs are attacks from parents of dyspraxic or apraxia

or autistic (or whatever it's called) children when all the guy is

doing is trying in his own way to raise awareness. Good for him. So

what if he is nasty -don't join his chat or donate money -but don't

badmouth the guy. That's just my opinion.

Anyway back to constructional dyspraxia -perhaps that's what he has?

And Liz perhaps if vision is involved you should look into it too.

But again -please show some compassion.

Dyspraxia by Category

Category Indicates difficulty with:

Ideomotor Dyspraxia Inability to complete single-step motor tasks

such as combing hair and waving goodbye.

Ideational Dyspraxia

Difficulty with multi-step tasks like brushing teeth, making a bed,

putting clothes on in order, as well as buttoning and buckling

Oromotor Dyspraxia

Difficulties coordinating the muscle movements needed to pronounce

words

Constructional Dyspraxia

Problems with establishing spatial relationships - for instance being

able to accurately position or move objects from one place to another

http://www.ncld.org/content/view/467/391/

=====

August 25, 2008

I know a few of us answered you already. What state or

country are you in? Perhaps we can find you local support. But in

short -no if the PROMPT therapist after 2 years didn't " work " that

doesn't mean PROMPT or some other touch cue wouldn't- it means she

didn't and it's a shame it took that long to find out. For sure you

need a new therapist and not to just concentrate on augmentative

devices as if if this one SLP didn't help that none will. It doesn't

have to be a PROMPT therapist -but yes we need to find you a good SLP

in your area to help ASAP.

About the fish oils all are not the same. The pure Omega 3 as a

group over the years we found not to work as well as the high

EPA small amount of GLA O3/O6 mix -and you want a

natural vitamin E with both alpha and gamma but I'm sure you already

have those messages. Here's a link to info from the CHERAB site

http://www.cherab.org/information/indexinformation.html#diet

There is no reason to start your child on a GFCF diet until you give

the basics a go for at least a month to three months..including

finding a new SLP!! Unlike fish oils GFCF is not something to just

start and stop on a whim -and it will make an impact on your child's

life as well as yours in more than one way and not all positive -I

know -I grew up on one because I had to and wouldn't wish it on

anyone. It's one thing to eat a certain way because you want to and

another because you have to.

So...where in the world are you?

=====

August 25, 2008

My son has construction apraxia. His ABA therapists work with blocks

and he recreates the structure. They are working on 3 block

combinations. It's one of the most difficult areas for him.

>

> Liz even outside of vision if not tested appropriately many apraxic

> children test low due to inappropriate tests and/or inexperienced

> evaluators. Then again in regards to vision going back to that one

> type of dyspraxia -there is that one type that affects

> vision " constructional dyspraxia

> Problems with establishing spatial relationships - for instance

being

> able to accurately position or move objects from one place to

another "

>

> And about this guy Warren who may have constructional dyspraxia -

I've

> spoken to a few " kids " who are now grown up and yes in some cases

> they hold anger. Before everyone jumps on someone who could be your

> child 20 years down the road please let's not assume he's out to

> steal everyone's 30 bucks or that he's making up his inability to

see

> in 3D. Whatever he's gone through or is going through in some way

or

> another he fell through the cracks if he didn't get diagnosed until

> 19 and since then he's trying to reach out to help others.

>

> As far as rebelling against doing so much you can read about that

> from high functioning autistics who are angry people look for cures

> for autism. In some small ways I see it already in my 12 year old

> Tanner in that these kids get to a point that they accept the way

> they are -even like the way they are. And yes for those that did

not

> receive the appropriate therapy while younger there is anger. Look

> at Barbara Walters -some of you may not know this but she was in

> speech therapy much of her childhood. I know a well known SLP who

> reached out to her through one of her staff that they knew mutually

> and Barbara (allegedly) said " I want nothing to do with SLPs. I

> spent years doing what they told me to do and I still have speech

> issues " OK the SLP was Sara Rosenthal CCC SLP and she

> offered to help -that's all. Just offered to help.

>

> Does that make Barbara a meanie? No -it was her inner child

talking. All

> of you saying stuff about this guy Warren (who probably would rebel

> against me too) are parents. Who knows in some way perhaps he is

> jealous and wishes his parents did more for him. I mean one would

> wonder wouldn't one? Try not to look at him as an adult. He is a

> child that fell through the cracks and now he's trying to make

> something of himself. The last thing a child that is now an adult

> with dyspraxia needs are attacks from parents of dyspraxic or

apraxia

> or autistic (or whatever it's called) children when all the guy is

> doing is trying in his own way to raise awareness. Good for him.

So

> what if he is nasty -don't join his chat or donate money -but don't

> badmouth the guy. That's just my opinion.

>

> Anyway back to constructional dyspraxia -perhaps that's what he has?

> And Liz perhaps if vision is involved you should look into it too.

> But again -please show some compassion.

>

> Dyspraxia by Category

>

> Category Indicates difficulty with:

>

> Ideomotor Dyspraxia Inability to complete single-step motor tasks

> such as combing hair and waving goodbye.

>

> Ideational Dyspraxia

> Difficulty with multi-step tasks like brushing teeth, making a bed,

> putting clothes on in order, as well as buttoning and buckling

>

> Oromotor Dyspraxia

> Difficulties coordinating the muscle movements needed to pronounce

> words

>

> Constructional Dyspraxia

> Problems with establishing spatial relationships - for instance

being

> able to accurately position or move objects from one place to

another

> http://www.ncld.org/content/view/467/391/

>

> =====

>

August 25, 2008

Virginia Beach VA

And we had seen therapist before the prompt therapist and she was

good therapist Alyssa didnt want to be touched..Are current therapist

is good Alyssa gets excited about seeing her.. and we just changed

from prompt to her in May and for the summer we focused on the device

so she would have a way to communicate. Her signing is distorted..

and with her going into SE kinder. she needed away to get her

thoughts out. I jst talked with our SLP and she is going to rewrite

our goals to be total communication. I's just frusrating that there

arent SLP that are well versed with Apraxia. My Alyssa just has it so

bad! You all seem to recommend PROMPT to be best..She sometimes seems

like she doesnt care to learn or be bothered..

I have thought about the kinder. and we are going to give it one

month and if it doesnt look we take her out,obivously sooner if need

be..but she is so excited about the idea of going..

I mean she finally cooperated with potty training this summer with

the thought that kindergardens wear underwears! She's almost

completely trained and it even working away from being timed...I have

been trying for years..

yeah I will get the right supplements..and the diet I dont know she

enjoys the things she eats and I cant see forcing her to eat food she

doesnt want,she has it hard enough

>

> I know a few of us answered you already. What state or

> country are you in? Perhaps we can find you local support. But in

> short -no if the PROMPT therapist after 2 years didn't " work " that

> doesn't mean PROMPT or some other touch cue wouldn't- it means she

> didn't and it's a shame it took that long to find out. For sure you

> need a new therapist and not to just concentrate on augmentative

> devices as if if this one SLP didn't help that none will. It

doesn't

> have to be a PROMPT therapist -but yes we need to find you a good

SLP

> in your area to help ASAP.

>

> About the fish oils all are not the same. The pure Omega 3 as a

> group over the years we found not to work as well as the high

> EPA small amount of GLA O3/O6 mix -and you want a

> natural vitamin E with both alpha and gamma but I'm sure you already

> have those messages. Here's a link to info from the CHERAB site

> http://www.cherab.org/information/indexinformation.html#diet

>

> There is no reason to start your child on a GFCF diet until you give

> the basics a go for at least a month to three months..including

> finding a new SLP!! Unlike fish oils GFCF is not something to just

> start and stop on a whim -and it will make an impact on your child's

> life as well as yours in more than one way and not all positive -I

> know -I grew up on one because I had to and wouldn't wish it on

> anyone. It's one thing to eat a certain way because you want to and

> another because you have to.

>

> So...where in the world are you?

>

> =====

>

August 26, 2008

,

I generally give people the benefit of the doubt and I do understand that some

people are definately a product of their experiences and upbringing. That being

said, we encounter all types of people on the internet, some are scrupulous and

others are not. We must be careful.

I have had dealings with Warren Fried and I am thankful that my son in no way

resembles him now and I am confident that he will in no way resemble him down

the road in 20 years! I don`t believe that your children will resemble him

either!

I do `get` those who are frustrated with dyspraxia or other neurodevelopmental

disabilities, who have endured years and years of humiliation since we went

through this as well BUT we did not let those experiences define us; we, in our

family.... made a choice. You in your family have made a similiar choice.....

to overcome and not to be allow the disability define who we are. We have

chosen to fight and not to endure.

There are some out there who would deny our children the right to heal; who

would advocate pure acceptance of illness rather then challenge it. If I had

cancer, I would fight it with every fiber of my being. My son has or I should

say had dyspraxia and I fight it with every fiber of my being.....

Though we do not always agree on the method; you and I.... we agree on the basic

premise that our children deserve an opportunity to get better and to live a

life without apraxia of speech or dyspraxia. We are united on this point.

There are many out there who are young, untreated adults who could still be

helped, who don`t have to live with many of the aspects of dyspraxia who receive

`bad`information and are told that they must simply `cope`and `endure`. When

you read their stories, it is incredibly disheartening because they receive so

much bad information and advice; it is completely sad.

Personally, I BELIEVE with all my heart that this is wrong and I wish that I

could enlighten the world. You and I along with all of the mothers who have

been through the tough times and have learned the path of healing for our

particular children try to teach true healing...... this is why we write on

these boards..... to provide alternative paths, to provide hope rather than

cope.... it is our `reason`.

I see that is lecturing on her studies of vitamin E along with EFAs and

I see that she too..... is providing a source of healing..... true healing so

that our future generations will not see `coping`as the only route to overcoming

these illnesses.

While we must find compassion for others who suffer, we must understand that

they are not necessarily the people whom we should follow or that we should

blindly send our money to or people whose advice is necessarily sage. I know

that I did not quite state this so eloquently but the politically correct words

escape me at present.....

Janice

Mother of Mark, 13

[sPAM][ ] Re: Receptive vs. Expressive Language for

Apraxia/and about Warren