New to Group

[Guest guest]

Welcome Maureen. I'm happy to hear that you are getting some relief

from your meds. One of our main gripes as a group is lack of

understanding from those around us. It's hard for them to understand

what we go through especially since we don't look sick. Your husband

sees you every day and witnesses the pain you go through and sees the

difficulties you face.

a

On Fri, 11 Mar 2005 10:22:26 -0500, mhwbcw92 <mhwbcw92@...> wrote:

>

> Hi.. I wanted to introduce myself as I am brand new to the group. My name

> is Maureen, I am 36 years old and married with two kids.

>

> I can't exactly pinpoint when I was " officially " diagnosed with RA as like

> many people I have been to several rheumys. I just keep going to find some

> relief. I tried so many different medications, psychotherapy, PT,

> chiropractor, massage...ect.. I did vitamins... you name it and it seems

> like I took it..I also have fibromyalgia along with Type II Bipolar... what

> a mouthful. I do get very discouraged as I " don't look sick " . People are

> so ignorant including family. The most understanding person is my husband

> of 12 1/2 years.

>

> My reason of joining this group is to meet others who have gone through or

> are going through the same things as me. I don't want to moan and groan...

> just find support. My oldest child (on top of everthing else) has Rett

> Syndrome. www.rettsyndrome.org She is almost 7 and requires round the

> clock care. We do have private duty nurses but sometimes they don't show

> up...ugh...

>

> Pain: I feel like I have tried them all and with so many reactions.

> Currently I take a combo of psych drugs that seem to help. I take:

> Neurontin, Visteral, Trileptal, Provigil, Cymbalta, Dyazide (for high BP)

> and Risperal (PRN). For now this combo is helping. We recently added

> Provigil for energy. I can't take more pain meds as they make me too tired

> to care for kids and self.

>

> My RA has a " low factore " but I still suffer from the symptoms that come

> from " out of the blue " . I have been to the ER too many times feeling like I

> had broken bones. Anyone else have that problem???

>

> I have had pain for many years but the worst was right after my daughter's

> birth. Then when I got pregnant with son (had to stop taking meds), I felt

> so much better. After his birth my pain came back with a vengence. It's

> hard to function with some many unknowns in my life. I do try and sometimes

> succeed. Currently I am on SSDI and am grateful for the assistance. It was

> a fight as one diagnosis doesn't qualify me but the combo does. Grateful

> for a great lawyer.

>

> I know that many of you can relate to my story and I look forward to

> hearing from you... thank you for welcoming me into your group..

>

> maureen mom to sarah and patrick and wife to brien

> nj

>

>

>

[Guest guest]

Welcome Maureen. I'm happy to hear that you are getting some relief

from your meds. One of our main gripes as a group is lack of

understanding from those around us. It's hard for them to understand

what we go through especially since we don't look sick. Your husband

sees you every day and witnesses the pain you go through and sees the

difficulties you face.

a

On Fri, 11 Mar 2005 10:22:26 -0500, mhwbcw92 <mhwbcw92@...> wrote:

>

> Hi.. I wanted to introduce myself as I am brand new to the group. My name

> is Maureen, I am 36 years old and married with two kids.

>

> I can't exactly pinpoint when I was " officially " diagnosed with RA as like

> many people I have been to several rheumys. I just keep going to find some

> relief. I tried so many different medications, psychotherapy, PT,

> chiropractor, massage...ect.. I did vitamins... you name it and it seems

> like I took it..I also have fibromyalgia along with Type II Bipolar... what

> a mouthful. I do get very discouraged as I " don't look sick " . People are

> so ignorant including family. The most understanding person is my husband

> of 12 1/2 years.

>

> My reason of joining this group is to meet others who have gone through or

> are going through the same things as me. I don't want to moan and groan...

> just find support. My oldest child (on top of everthing else) has Rett

> Syndrome. www.rettsyndrome.org She is almost 7 and requires round the

> clock care. We do have private duty nurses but sometimes they don't show

> up...ugh...

>

> Pain: I feel like I have tried them all and with so many reactions.

> Currently I take a combo of psych drugs that seem to help. I take:

> Neurontin, Visteral, Trileptal, Provigil, Cymbalta, Dyazide (for high BP)

> and Risperal (PRN). For now this combo is helping. We recently added

> Provigil for energy. I can't take more pain meds as they make me too tired

> to care for kids and self.

>

> My RA has a " low factore " but I still suffer from the symptoms that come

> from " out of the blue " . I have been to the ER too many times feeling like I

> had broken bones. Anyone else have that problem???

>

> I have had pain for many years but the worst was right after my daughter's

> birth. Then when I got pregnant with son (had to stop taking meds), I felt

> so much better. After his birth my pain came back with a vengence. It's

> hard to function with some many unknowns in my life. I do try and sometimes

> succeed. Currently I am on SSDI and am grateful for the assistance. It was

> a fight as one diagnosis doesn't qualify me but the combo does. Grateful

> for a great lawyer.

>

> I know that many of you can relate to my story and I look forward to

> hearing from you... thank you for welcoming me into your group..

>

> maureen mom to sarah and patrick and wife to brien

> nj

>

>

>

[Guest guest]

Hi Maureen,

Welcome to the group! I am sorry to hear about your dx, but glad you

found the group. You will find great information here, and wonderful

support buddies.

RA sis,Tawny

>

> Hi.. I wanted to introduce myself as I am brand new to the group.

My name is Maureen, I am 36 years old and married with two kids.

>

> I can't exactly pinpoint when I was " officially " diagnosed with RA

as like many people I have been to several rheumys. I just keep

going to find some relief. I tried so many different medications,

psychotherapy, PT, chiropractor, massage...ect.. I did vitamins...

you name it and it seems like I took it..I also have fibromyalgia

along with Type II Bipolar... what a mouthful. I do get very

discouraged as I " don't look sick " . People are so ignorant including

family. The most understanding person is my husband of 12 1/2

years.

>

> My reason of joining this group is to meet others who have gone

through or are going through the same things as me. I don't want to

moan and groan... just find support. My oldest child (on top of

everthing else) has Rett Syndrome. www.rettsyndrome.org She is

almost 7 and requires round the clock care. We do have private duty

nurses but sometimes they don't show up...ugh...

>

> Pain: I feel like I have tried them all and with so many

reactions. Currently I take a combo of psych drugs that seem to

help. I take: Neurontin, Visteral, Trileptal, Provigil, Cymbalta,

Dyazide (for high BP) and Risperal (PRN). For now this combo is

helping. We recently added Provigil for energy. I can't take more

pain meds as they make me too tired to care for kids and self.

>

> My RA has a " low factore " but I still suffer from the symptoms that

come from " out of the blue " . I have been to the ER too many times

feeling like I had broken bones. Anyone else have that problem???

>

> I have had pain for many years but the worst was right after my

daughter's birth. Then when I got pregnant with son (had to stop

taking meds), I felt so much better. After his birth my pain came

back with a vengence. It's hard to function with some many unknowns

in my life. I do try and sometimes succeed. Currently I am on SSDI

and am grateful for the assistance. It was a fight as one diagnosis

doesn't qualify me but the combo does. Grateful for a great lawyer.

>

> I know that many of you can relate to my story and I look forward

to hearing from you... thank you for welcoming me into your group..

>

> maureen mom to sarah and patrick and wife to brien

> nj

>

>

>

[Guest guest]

Hi Maureen,

Welcome to the group! I am sorry to hear about your dx, but glad you

found the group. You will find great information here, and wonderful

support buddies.

RA sis,Tawny

>

> Hi.. I wanted to introduce myself as I am brand new to the group.

My name is Maureen, I am 36 years old and married with two kids.

>

> I can't exactly pinpoint when I was " officially " diagnosed with RA

as like many people I have been to several rheumys. I just keep

going to find some relief. I tried so many different medications,

psychotherapy, PT, chiropractor, massage...ect.. I did vitamins...

you name it and it seems like I took it..I also have fibromyalgia

along with Type II Bipolar... what a mouthful. I do get very

discouraged as I " don't look sick " . People are so ignorant including

family. The most understanding person is my husband of 12 1/2

years.

>

> My reason of joining this group is to meet others who have gone

through or are going through the same things as me. I don't want to

moan and groan... just find support. My oldest child (on top of

everthing else) has Rett Syndrome. www.rettsyndrome.org She is

almost 7 and requires round the clock care. We do have private duty

nurses but sometimes they don't show up...ugh...

>

> Pain: I feel like I have tried them all and with so many

reactions. Currently I take a combo of psych drugs that seem to

help. I take: Neurontin, Visteral, Trileptal, Provigil, Cymbalta,

Dyazide (for high BP) and Risperal (PRN). For now this combo is

helping. We recently added Provigil for energy. I can't take more

pain meds as they make me too tired to care for kids and self.

>

> My RA has a " low factore " but I still suffer from the symptoms that

come from " out of the blue " . I have been to the ER too many times

feeling like I had broken bones. Anyone else have that problem???

>

> I have had pain for many years but the worst was right after my

daughter's birth. Then when I got pregnant with son (had to stop

taking meds), I felt so much better. After his birth my pain came

back with a vengence. It's hard to function with some many unknowns

in my life. I do try and sometimes succeed. Currently I am on SSDI

and am grateful for the assistance. It was a fight as one diagnosis

doesn't qualify me but the combo does. Grateful for a great lawyer.

>

> I know that many of you can relate to my story and I look forward

to hearing from you... thank you for welcoming me into your group..

>

> maureen mom to sarah and patrick and wife to brien

> nj

>

>

>

[Guest guest]

Hello, Jen. Welcome to the group. You will find that you will make

many friends here and get your questions answered. Believe me, when

I tell you, that talking to someone who is going through this is

much more satisfying than talking to someone who doesn't understand,

no matter how hard they try. Feel free to post any questions,

comments, concerns you may have. You can email me as well. Take

care, and welcome on board!!....Marina in Ohio

>

>

> Hello my name is or Jen as most call me. I am joining

yuour

> group because I was just told that I have RA. I am 37 and happily

> married with 4 children. I have my first visit with an RA Doctor

> starting April 15. On Aril 14 I am having some nerve test done and

> am very nevious. I know I am a strange to the group but some one

to

> talk to about all this would be great so I dont burden my husband,

> freinds and other memebers of the family. Hope to hear from

someone

> soon.

>

> Jen

[Guest guest]

Hello, Jen. Welcome to the group. You will find that you will make

many friends here and get your questions answered. Believe me, when

I tell you, that talking to someone who is going through this is

much more satisfying than talking to someone who doesn't understand,

no matter how hard they try. Feel free to post any questions,

comments, concerns you may have. You can email me as well. Take

care, and welcome on board!!....Marina in Ohio

>

>

> Hello my name is or Jen as most call me. I am joining

yuour

> group because I was just told that I have RA. I am 37 and happily

> married with 4 children. I have my first visit with an RA Doctor

> starting April 15. On Aril 14 I am having some nerve test done and

> am very nevious. I know I am a strange to the group but some one

to

> talk to about all this would be great so I dont burden my husband,

> freinds and other memebers of the family. Hope to hear from

someone

> soon.

>

> Jen

[Guest guest]

You came to a good place Jen. Glad you're here.

Joyce from Texas

[ ] New To Group

Hello my name is or Jen as most call me. I am joining yuour

group because I was just told that I have RA. I am 37 and happily

married with 4 children. I have my first visit with an RA Doctor

starting April 15. On Aril 14 I am having some nerve test done and

am very nevious. I know I am a strange to the group but some one to

talk to about all this would be great so I dont burden my husband,

freinds and other memebers of the family. Hope to hear from someone

soon.

Jen

[Guest guest]

You came to a good place Jen. Glad you're here.

Joyce from Texas

[ ] New To Group

Hello my name is or Jen as most call me. I am joining yuour

group because I was just told that I have RA. I am 37 and happily

married with 4 children. I have my first visit with an RA Doctor

starting April 15. On Aril 14 I am having some nerve test done and

am very nevious. I know I am a strange to the group but some one to

talk to about all this would be great so I dont burden my husband,

freinds and other memebers of the family. Hope to hear from someone

soon.

Jen

[Guest guest]

Welcome Jen. Being newly diagnosed can be frightening. We have many

members that have been through everything and we understand how you

feel. I haven't had a nerve test done, but I watched my husband get

one done. He didn't think it was anything to get upset about. Others

have said they weren't so fun. I've found attitude makes a big

difference in how we handle this disease. Some woman have babies

without so much as an aspirin and others want to be knocked out at the

first pain and woken up when it's over. Our pain tolerance is

different, so what may be horrible for one person could be minimal for

others. I hope the test goes well and the results will help you. Did

your GP do the diagnosis?

a

On Mar 24, 2005, at 8:09 PM, whysper wrote:

>

>

> Hello my name is or Jen as most call me. I am joining yuour

> group because I was just told that I have RA. I am 37 and happily

> married with 4 children. I have my first visit with an RA Doctor

> starting April 15. On Aril 14 I am having some nerve test done and

> am very nevious. I know I am a strange to the group but some one to

> talk to about all this would be great so I dont burden my husband,

> freinds and other memebers of the family. Hope to hear from someone

> soon.

>

> Jen

>

>

>

>

>

>

>

>

>

[Guest guest]

Welcome Jen. Being newly diagnosed can be frightening. We have many

members that have been through everything and we understand how you

feel. I haven't had a nerve test done, but I watched my husband get

one done. He didn't think it was anything to get upset about. Others

have said they weren't so fun. I've found attitude makes a big

difference in how we handle this disease. Some woman have babies

without so much as an aspirin and others want to be knocked out at the

first pain and woken up when it's over. Our pain tolerance is

different, so what may be horrible for one person could be minimal for

others. I hope the test goes well and the results will help you. Did

your GP do the diagnosis?

a

On Mar 24, 2005, at 8:09 PM, whysper wrote:

>

>

> Hello my name is or Jen as most call me. I am joining yuour

> group because I was just told that I have RA. I am 37 and happily

> married with 4 children. I have my first visit with an RA Doctor

> starting April 15. On Aril 14 I am having some nerve test done and

> am very nevious. I know I am a strange to the group but some one to

> talk to about all this would be great so I dont burden my husband,

> freinds and other memebers of the family. Hope to hear from someone

> soon.

>

> Jen

>

>

>

>

>

>

>

>

>

[Guest guest]

Sonya,

Hi and welcome. My name is Carol and I have a 7 month old

boy,Dominick, with plagio/tort. We go to the ndale Va. office of

CT. Is that where you are going? We live in Orange County. Dominick

has been banded at 5 months, and we are now waiting for Band #2. Once

again welcome to you and Kody.

CAROLG

--- In Plagiocephaly , " the_judkins " <the_judkins@y...>

wrote:

>

> My son Kody is 10 months old and just got his DOC band yesterday.

We

> live in Sterling, Va. I would love to hear from others who live in

> this area. Thanks, Sonya

[Guest guest]

Sonya,

Hi and welcome. My name is Carol and I have a 7 month old

boy,Dominick, with plagio/tort. We go to the ndale Va. office of

CT. Is that where you are going? We live in Orange County. Dominick

has been banded at 5 months, and we are now waiting for Band #2. Once

again welcome to you and Kody.

CAROLG

--- In Plagiocephaly , " the_judkins " <the_judkins@y...>

wrote:

>

> My son Kody is 10 months old and just got his DOC band yesterday.

We

> live in Sterling, Va. I would love to hear from others who live in

> this area. Thanks, Sonya

[Guest guest]

hi Sonya,

Welcome to the group. How is Kody adjusting? My na wore a DOC band from the Charlotte clinic. Have you decorated it yet? We have tons of tips and ideas in the files section.

mom to na

DOC Grad

South Carolina

www.thefilyaws.com

the_judkins <the_judkins@...> wrote:

My son Kody is 10 months old and just got his DOC band yesterday. We live in Sterling, Va. I would love to hear from others who live in this area. Thanks, SonyaFor more plagio info

[Guest guest]

hi Sonya,

Welcome to the group. How is Kody adjusting? My na wore a DOC band from the Charlotte clinic. Have you decorated it yet? We have tons of tips and ideas in the files section.

mom to na

DOC Grad

South Carolina

www.thefilyaws.com

the_judkins <the_judkins@...> wrote:

My son Kody is 10 months old and just got his DOC band yesterday. We live in Sterling, Va. I would love to hear from others who live in this area. Thanks, SonyaFor more plagio info

[Guest guest]

Thanks for the welcome! Kody is adjusting well so far. The first day

in the DOC band his pressure points stayed red for 2 hours so we had

to go back the next day and have it readjusted. Since then his skin

has looked great. Tonight is his first time to wear the band to bed.

I hope he sleeps okay. We did have it decorated. My brother-in-law

painted it for us this weekend. The backround is blue sky and snow.

There are lego snowboarders all around it with a halfpipe in the front

of the helmet. It looks awesome. I will post a picture in the photos

section to add to all the beautiful babies. Thanks, Sonya

>

> My son Kody is 10 months old and just got his DOC band yesterday. We

> live in Sterling, Va. I would love to hear from others who live in

> this area. Thanks, Sonya

>

>

>

>

>

> For more plagio info

[Guest guest]

Thanks for the welcome! Kody is adjusting well so far. The first day

in the DOC band his pressure points stayed red for 2 hours so we had

to go back the next day and have it readjusted. Since then his skin

has looked great. Tonight is his first time to wear the band to bed.

I hope he sleeps okay. We did have it decorated. My brother-in-law

painted it for us this weekend. The backround is blue sky and snow.

There are lego snowboarders all around it with a halfpipe in the front

of the helmet. It looks awesome. I will post a picture in the photos

section to add to all the beautiful babies. Thanks, Sonya

>

> My son Kody is 10 months old and just got his DOC band yesterday. We

> live in Sterling, Va. I would love to hear from others who live in

> this area. Thanks, Sonya

>

>

>

>

>

> For more plagio info

[Guest guest]

Wow his band looks awesome!!! Your BIL did a great job! I'm glad he is adjusting well.

mom to na

DOC Grad

South Carolina

www.thefilyaws.comthe_judkins <the_judkins@...> wrote:

Thanks for the welcome! Kody is adjusting well so far. The first dayin the DOC band his pressure points stayed red for 2 hours so we hadto go back the next day and have it readjusted. Since then his skinhas looked great. Tonight is his first time to wear the band to bed.I hope he sleeps okay. We did have it decorated. My brother-in-lawpainted it for us this weekend. The backround is blue sky and snow. There are lego snowboarders all around it with a halfpipe in the frontof the helmet. It looks awesome. I will post a picture in the photossection to add to all the beautiful babies. Thanks, Sonya> > My son Kody is 10 months old and just got his DOC band yesterday. We > live in Sterling, Va. I would love to hear from others who live in > this area. Thanks, Sonya> > > > > > For more plagio info

[Guest guest]

>>>>>>>> My husband says

that 50% of the communication in our home is (arguing) about the

communication itself. <<

First of all welcome !!

And reading the lines above made me think of my dh… if I had to put my

finger on one difficulty between us, that would certainly be communication.

No eye contact, no need to share, no understanding of my need for a

dialogue, and just let him start talking about his pet subjects – history

and old movies… he has never been dx with anything (except procrastination,

lol) and in any case our ds with AS was adopted by us, so there is no

genetic link I can rely upon, but the more I live with this dh if mine the

more I am willing ot bet my head off that he has AS.

<<<<<I believe I have a milder case of Asperger's than my daughter. My

blessed NT husband has been very patient with all of us on our journey.

Now I know why I don't have the huge capacity to love that he does. I

try my hardest.>

dear Pam, if indeed you have a form o f AS, then it is not your capacity to

love that is affected, but your ability to pronounce your love, to

communicate it. And having a dh who has been with you until now and is still

patient shows that that too is probably not true either…. :-)

hang around here, and you will get all the info you want and need( probably

a lot more than you asked for) but more importantly : a lot of support!

F

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[Guest guest]

Hello all. I am new to the group as well. I have a question for Lou

about the book " Brain Training. " I checked out the link you sent. Is

the book informational only (I can see it's very scientific--I read

the sample chapter) or does it also provide ways or exercises in

language development?

As an intro---I am Nennette from the L.A. area. My daughter is 4-1/2

and has been diagnosed with Apraxia of Speech. She's going through

private speech therapy right now -- we've only just begun about 5

sessions so far. She goes to a private Montessori as a preschooler.

She had an IEP through the school district, but we have been

disatisfied with it (long story). I pray that the one-on-one therapy

does the trick. Her condition is the result of malnutrition during the

first 18 months of her life. We adopted her at age 3 from Ecuador. At

that time she was speaking 2-to-3-word phrases in Spanish. Within 6

months of being in the States, she lost all the Spanish that she knew.

She is very talkative and otherwise appears to be healthy and has good

gross and fine motor skills. But because of her background, she has a

speech delay of about 8 months, supposedly. What I am concerned about

is how this will affect her learning ability, especially now that she

is getting close to starting formal schooling.

I'm so glad I found this group and be amongst those of you who are

going through the same issues. Thank you!

Nennette Ferris

Mama to Nantar Noelle (dob 8/00)

[Guest guest]

Nennette

My wife and I, like most parents in this group, are parents trying to

understand and mange all the information about our child's learning

difficulties. I sometime feel that we expect to much from our kids at

certain ages. What really is normal? We had a neurologist tell us not

to worry about 's late taking (she was 3 at the time), she will

talk when she is ready. Turns out that he had a child that did not talk

to he was 6 years old and then they could not shut him up. But as

parents we are concerned and want to do all we can to help our kids. I

probably will get winded writting this and ramble on but here we go

.................

The " Brain Training " book tries to cover the way we communicate, stages

in development, how the brain works, on the scientific side, but tries

to offer the alternatives to teaching our kids how to communicate. Its

not your typical approach to " Late Talkers " or Apraxia. I feel it gives

you the information needed to teach your child through what I call the

word-picture-play scenarios. I am sure I am not communicating the jest

of the book correctly but the more you understand and read up on the

different ways the brain works and absorbs information during the

different development cycles of a child, the better you can decide the

best approach for your child. Go with your gut feeling, it's probably

right.

In your case, from your email, your Daughter's problems are from

malnutrition along with being thrown into a new culture. Alot for a

little one to adjust too. Kids then to bounce back from issues like this

along with love from family and friends. Being 8 months behind is not

that bad! , my daughter, is 4 1/2 but communicates at a 3 year

old level (verbal).

You did not mention what type of speech therapy she is doing: Phonics

speech therapy? She goes to a private Montessori school which is

probably one of the best things you can do academically (besides home

school). The environment allows for her to learn at her own pace and

not forced to do things she is not ready for.

From the reading I do and from the Medical community I trust, the best

approach for a Verbal Apraxia diagnosed child is more on the order of

word-picture-play scenarios. Phonics based is like putting the horse

before the cart. It has it's place in Verbal Apraxia therapy but only

after certain word definitions are known to the child. I am no doctor

but seeing is believing ........... For , the best way we see

her learn and communicate is by doing, feeling, and observing. The

standard speech therapy like schools do or the OLD Methods some

therapists use do not get results for . The Brain Training

Associates, MacAlpine, Ph.D., takes this approach of

word-picture-play scenarios first. Trying to force an Verbal Apraxia

child to learn say the " F " sound (Phonics speech therapy) is the wrong

approach. The child has no clue what a " F " sound is ... cannot feel it,

touch it, or observe it .... but teaching through pictures and objects

... like a Fire Hose, a fig-newton will make more sense to the child.

They are able to see and touch it therefor associate the sound " F " to a

real thing. Make sense?

One last thing, if possible try different therapists that have different

approaches to the problem. Or if you do not see results, change

therapists. Also if the therapist will not let you sit in on the

therapy session .... run as fast as you can away from that therapist.

Lou

nennette ferris wrote:

> Hello all. I am new to the group as well. I have a question for Lou

> about the book " Brain Training. " I checked out the link you sent. Is

> the book informational only (I can see it's very scientific--I read

> the sample chapter) or does it also provide ways or exercises in

> language development?

>

> As an intro---I am Nennette from the L.A. area. My daughter is 4-1/2

> and has been diagnosed with Apraxia of Speech. She's going through

> private speech therapy right now -- we've only just begun about 5

> sessions so far. She goes to a private Montessori as a preschooler.

> She had an IEP through the school district, but we have been

> disatisfied with it (long story). I pray that the one-on-one therapy

> does the trick. Her condition is the result of malnutrition during the

> first 18 months of her life. We adopted her at age 3 from Ecuador. At

> that time she was speaking 2-to-3-word phrases in Spanish. Within 6

> months of being in the States, she lost all the Spanish that she knew.

> She is very talkative and otherwise appears to be healthy and has good

> gross and fine motor skills. But because of her background, she has a

> speech delay of about 8 months, supposedly. What I am concerned about

> is how this will affect her learning ability, especially now that she

> is getting close to starting formal schooling.

>

> I'm so glad I found this group and be amongst those of you who are

> going through the same issues. Thank you!

>

> Nennette Ferris

> Mama to Nantar Noelle (dob 8/00)

>

[Guest guest]

Lou welcome to the group -you sound like an awesome dad! The book you

just posted about is timely because it relates to our recent

discussion about right/left brain theories on language acquisition as

well as the importance of multisensory approaches to both therapy and

learning.

Actually -this page they have as an example chapter to read here

http://www.braintraining.com/Chapter.pdf which starts with the story

about Genie -same story was on the following page I came 'so' close to

referencing yesterday for it's views on right/left brain in regards to

language acquisition. What are the odds you know?!

" Critical period for language acquisition: the case of Genie:

Scientists believe that there may be a critical period for first

language acquisition. This means that there is a time limit during

which the baby must be exposed to language if he/she is to acquire

language normally. A famous case study which lends support to the

critical period theory is the case of Genie. Genie was a young girl

who was locked in a small closet-like room at the age of 18 months by

her schizophrenic father. Her mother was blind and was also abused by

the father, so she was unable to help Genie. After her father died,

Genie was finally freed from the closet. She was 13 years old.

When Genie was first locked in the closet, she was just beginning to

acquire language. What kind of language skills would she have when

released at the age of 13? Genie's tragic case provides evidence that

language acquisition may be limited to a critical period. Although

Genie is now an adult, her language development is quite immature.

She produces mostly nouns, some verbs, but few adjectives or adverbs.

Her utterances usually consist of no more than three words. After

intensive language training and psychotherapy, Genie has not been able

to acquire normal language skills.

Why is there a critical period for learning language? How long is

that critical period? The critical period is thought to be related to

brain plasticity and lateralization. Plasticity refers to how

flexible the brain is in learning various functions. Lateralization

refers to the specializations of the two sides, or hemispheres, of the

brain. Scientists believe that the critical period for first language

acquisition ends somewhere between the ages of 4 and 12. At this age,

the brain appears to lose its plasticity for learning language. In

addition, specialized language behaviors become controlled primarily

by the left hemisphere of the brain. In theory, if a child is not

exposed to language during the critical period, he/she will never be

able to acquire it normally.

Genie was not exposed to language during the critical period. She was

not spoken to; she did not learn how to form words and to combine

those words into sentences. When she was released from the closet at

the age of 13, her brain had lost its ability to learn normal

language. However, we must remember that Genie suffered more than

language deprivation during her captivity; she also suffered social

deprivation. The social deprivation probably played a role in her

later language development. "

http://kccesl.tripod.com/hypertextstudy/humanlanguagespring03.html

About multisensory -I'm on the same page. So what if our children

don't just pick up speech like others do -we need to find what works

for them. If it works and helps them communicate -that's what we do.

Watch what sense appears to best helps your child and work it into

therapy and part of his or her life. For example -my son Tanner

always talked best when jumping on a trampoline, being pushed on a

swing, or being chased...in movement. (or today -after a day on rides

at Disney or Universal)

So we learned to incorporate that into therapy -part of how we help

him to speak. Like when younger when Tanner said the

words " absolutely it! " It was amazing -but as many of you know -it's

an amazing and most times fleeting moment.

What did I do? I tried to get him to repeat it -but not the way most

do that. I didn't say " Say that again " because that doesn't work for

apraxic children. I chased him around the house while he was laughing

shouting " absolutely it " over and over while I was saying " Don't say

absolutely it again or I'm going to tickle you I'm so happy! "

(probably doesn't translate well -but if you were there reverse psych

worked really well with Tanner!) My goal was to get him to repeat it

over and over -to get it into his motor memory -but at the same time

keep it fun. We didn't stop at movement -visual therapy, auditory

therapy, massage therapy -in some ways so much of it was worth

exploring. When Tanner reads today it's music to my ears he reads so

well. That's all I can say -when he reads he sounds just like

everyone else. Does he when he's not reading? When he only needs to

answer with brief answers -or he sounds choppy still at times.

Tanner's " Talking Page "

http://www.debtsmart.com/talk/tanner.html

One of the best pages I found for multisensory language programs that

it sounds like you would like too Lou -

http://www.ldonline.org/ld_indepth/reading/mssl_methods.html

I always suggest to print this out and save it in your child's file

just in case. Links don't always work for ever, or even for the year

it takes for you to need it.

Best to you and your family and again -welcome!

=====

[Guest guest]

Thank you so much, Lou & , for your in-depth replies! You have

convinced me to purchase that book on brain training! And yes, ,

we do believe in the theory of right vs. left brained children. In

fact, I just purchased the book " Upside Down Brilliance: The

Visual-Spatial Learner " . But even before hearing of that book, we were

convinced that Montessori school was the best option if only because

of their hands-on, practical approach to education and low

teacher:student ratio. I've always had a gut feeling about my

daughter's speech delay, despite how people, though well-meaning,

often shrug it off as a late-talker case or simply a result of

multi-lingual exposure. I am not an expert researcher, but in the

little reading that I've done on speech development, I know that it's

more than that.

Upon arriving in the US (3 years) we immediately put our daughter in

private preschool and enlisted her in Special Ed and got her an IEP to

attend AEEP (after school early ed program) with focus on speech

therapy. But I quickly became exasperated with their system because

(a) the speech therapist's attendance was hit or miss, and ( if she

did show up, only 15 minutes was alloted (group setting). My daughter

showed improvement just from the regular interaction at preschool. But

we kept her on the AEEP classes realizing that it has some value. The

problem now is she turns 5 in August, and we were pretty much told by

the district that we have to put her in Kindergarten to continue

receiving services. I refuse to put my daughter in Kindergarten just

because she's 5. Anyway, that's a whole other subject. On the one

hand, public services are free, but if it's a system that we do not

believe in, it may do more harm than good. And that is why we opted to

put her in a private Montessori school. They are also better in

addressing any potential learning disability she might have as a

result of Apraxia.

May I ask you, Lou, at what level your daughter's speech is? You said

3-year old. Forgive me for my cluelessness. What is the typical speech

pattern of a 3-year-old? The reason I ask is because I feel my

daughter is at the same level--or perhaps I am wrong. She speaks

clearly and sensibly most of the time and on a few occasions makes up

words or gives up if she cannot express herself. Her sentences are

usually 4 or more words, but she has trouble with grammar---gender,

tenses, and puts words in the wrong order. For instance, even if she

knows to say " can you carry me, " she'll usually say, " can i carry

you. " She would also drop words from a sentence like, " can you play

me, " although in a different circumstance she'll say " i want to sit

WITH you. " She can relate stories and will " pretend " to read a book

and be right on with what's going on on each page because she has

memorized the dialogue, minus correct grammar sometimes. She memorized

songs but drops words here and there. She recognizes letters by

phonetics and has recently been so preoccupied by identifying letters

she sees on signs and billboards.

As far as the speech therapy she's getting now---interestingly, you

mentioned word-picture-play. That's exactly what the therapist is

doing. She is also against phonetics, in fact, she pointed that out to

me right away when she observed that my daughter, when identifying

objects in picture cards, would sound out the first letter a couple

times before saying the word, as in " ca.. ca.. cat. " She worried that

that might cause her to stutter. Anyway, the therapist is willing to

discuss these matters with her teacher to find the best approach in

enhancing speech development. I am not in the room when she gets

therapy and prefer not to because my daughter gets distracted when I

am around.

Anyway, any feedback or exchange is always appreciated! Thank you all!

This is a very informative group!

Nennette Ferris

Chatsworth (L.A.), CA

Mama to Nantar (diagnosed with Apraxia of Speech)

[Guest guest]

Nennette

Hmmmmm turns 5 in August also, 18 August to be exact. From

your description Nantar is a head of in her ability to put

sentences together and vocabulary usage. You are right it is more

then speech development. in the past several months started to

put 3 and 4 words together and on occasion puts two sentences together.

She does more of 3 word sentences that stand alone.

Let's go

pick me up, daddy

just do it

go up stairs

you home

She cannot say " " but says " amtha " . She has a problem with the

sequencing needed to put out a complete thought. She also has problem

with gender which I feel at this point is not a big deal. She

understands concepts very well and can follow simple instructions

(Multiple steps) but has a hard time getting the thoughts to words.

just cannot put multiple sentences together or come up with the

agatives & pronouns one might expect from a child her age. She does NOT

know letters or can print. Drawing is non existent i.e. circles,

squares, triangles (for the most part). Her motor skills are lacking,

clumsy one might say. Jumping, running and those type of activities are

not smooth. She rather show you then speak it - if that makes sense.

She is very picture orientated, hands on, and non verbal communication.

Her sounds are nasal in nature. She is an extremely happy kid and

socializes very well. Normal kids tend to shy away from her since she

cannot communicate. She is very smart and can figure out complex things.

Putting her in Montessori school is great. I wish more parents would

look at this option, for any kid. The one-on-one teaching, group

teaching, and teachers willingness to think outside the box, makes it a

perfect atmosphere for learning. She recognizes letters by

phonetics and has recently been so preoccupied by identifying letters

she sees on signs and billboards ... wow that is great! Nantar sounds

like she will be ok. She is on the road to living a full and happy life.

We home school so we do not use the public resources (we can if we

wanted too). The " Systems " in place through public schools are

inadequent and personnel are sub par. I do not know how many of you can

handle the type of bureaucracy, lack of caring, forcing kids into

situations that are not meant for them, and I know it's free. We home

school so our kids get a better education then what can be given in

Public schools. We know many Public School families and we hear nothing

but horror stories. The schools seemed to want to put kids on one drug

or another for almost any reason (mainly to make teachers life easier).

I am lucky that I have great insurance and make a good living so we go

the private rout for therapy. One must use the resources available.

The therapist we use have stated (My Wife) does more with

and using the right techniques then any therapy we can buy. But going

to the right Therapist helps us to understand the issues facing us and

gives us feedback on techniques to use.

We went to a neurologist yesterday, more opinions for us to digest, and

he stated " just do more of everything you are doing " . The doc also said

her ability to digest information and then respond is not there. The

sequencing of putting that thought together is lacking. He explained it

like a computer Macro where you just push one button and through that

many different tasks get done automatically to spit out an answer. He

also said there is no special therapy or drug we should use. Meaning

different types of therapy, mainly word-picture-play. Again he said

" the more the better and different situations " .

We put in a gymnastics class (ASI), music class, and art class

several months ago. I believe this activity is helping more then any

Verbal Therapy session we do. Yes she has problems doing the " stuff " in

the classes but her mind is working, thinking and developing because of

it. I feel her wiring in her brain is starting to make connections.

I will be buying " Upside Down Brilliance: The Visual-Spatial Learner " .

My daughters development is moving in the right direction mainly due to

my wife, , and the amount of time, effort and energy she puts into

.

What causes this? was 41 when she had her, the shots that they get

as infants, bad gens, the third child born, the positioning of the stars

.... who knows ... we just deal with it!

Thanks for the feedback and you seem like you are smart, loving, and on

the right track.

Lou

nennette ferris wrote:

> Thank you so much, Lou & , for your in-depth replies! You have

> convinced me to purchase that book on brain training! And yes, ,

> we do believe in the theory of right vs. left brained children. In

> fact, I just purchased the book " Upside Down Brilliance: The

> Visual-Spatial Learner " . But even before hearing of that book, we were

> convinced that Montessori school was the best option if only because

> of their hands-on, practical approach to education and low

> teacher:student ratio. I've always had a gut feeling about my

> daughter's speech delay, despite how people, though well-meaning,

> often shrug it off as a late-talker case or simply a result of

> multi-lingual exposure. I am not an expert researcher, but in the

> little reading that I've done on speech development, I know that it's

> more than that.

>

> Upon arriving in the US (3 years) we immediately put our daughter in

> private preschool and enlisted her in Special Ed and got her an IEP to

> attend AEEP (after school early ed program) with focus on speech

> therapy. But I quickly became exasperated with their system because

> (a) the speech therapist's attendance was hit or miss, and ( if she

> did show up, only 15 minutes was alloted (group setting). My daughter

> showed improvement just from the regular interaction at preschool. But

> we kept her on the AEEP classes realizing that it has some value. The

> problem now is she turns 5 in August, and we were pretty much told by

> the district that we have to put her in Kindergarten to continue

> receiving services. I refuse to put my daughter in Kindergarten just

> because she's 5. Anyway, that's a whole other subject. On the one

> hand, public services are free, but if it's a system that we do not

> believe in, it may do more harm than good. And that is why we opted to

> put her in a private Montessori school. They are also better in

> addressing any potential learning disability she might have as a

> result of Apraxia.

>

> May I ask you, Lou, at what level your daughter's speech is? You said

> 3-year old. Forgive me for my cluelessness. What is the typical speech

> pattern of a 3-year-old? The reason I ask is because I feel my

> daughter is at the same level--or perhaps I am wrong. She speaks

> clearly and sensibly most of the time and on a few occasions makes up

> words or gives up if she cannot express herself. Her sentences are

> usually 4 or more words, but she has trouble with grammar---gender,

> tenses, and puts words in the wrong order. For instance, even if she

> knows to say " can you carry me, " she'll usually say, " can i carry

> you. " She would also drop words from a sentence like, " can you play

> me, " although in a different circumstance she'll say " i want to sit

> WITH you. " She can relate stories and will " pretend " to read a book

> and be right on with what's going on on each page because she has

> memorized the dialogue, minus correct grammar sometimes. She memorized

> songs but drops words here and there. She recognizes letters by

> phonetics and has recently been so preoccupied by identifying letters

> she sees on signs and billboards.

>

> As far as the speech therapy she's getting now---interestingly, you

> mentioned word-picture-play. That's exactly what the therapist is

> doing. She is also against phonetics, in fact, she pointed that out to

> me right away when she observed that my daughter, when identifying

> objects in picture cards, would sound out the first letter a couple

> times before saying the word, as in " ca.. ca.. cat. " She worried that

> that might cause her to stutter. Anyway, the therapist is willing to

> discuss these matters with her teacher to find the best approach in

> enhancing speech development. I am not in the room when she gets

> therapy and prefer not to because my daughter gets distracted when I

> am around.

>

> Anyway, any feedback or exchange is always appreciated! Thank you all!

> This is a very informative group!

>

> Nennette Ferris

> Chatsworth (L.A.), CA

> Mama to Nantar (diagnosed with Apraxia of Speech)

>

[Guest guest]

You might try -

C. , M.D.

4505 Fair Meadows Lane - Suite 111

Raleigh, NC - 27607

919-571-4399

I suggest you take him the FAQ and a print-out of the scientific studies

supporting this therapy.

Ethel

rheumatic New to group

> Hi All,

> I have recently discovered the possibility of antibiotic therapy for

> my RA, diagnosed 10 years ago.I have used NSAIDS to decrease pain, but

> want to explore natural therapies. Does anyone know of doctors in the

> Raleigh, N.C area who is familiar with the antibiotic protocols for

> RA. I am also seeking a homeopathic/osteopathic doctor. Has anyone had

> success with accupuncture/homeopathic therapy? I am sore primarily in

> my wrists and fingers, ankles and knees. I work 14 hour days 6 days a

> week working on a computer and in a restaurant nights. I would

> appreciate the benefit of the group experiences.

> Thanks,

> Marie Myatt

>

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

[Guest guest]

" She cannot say " " but says " amtha " . She has a problem with

the sequencing needed to put out a complete thought. She also has

problem with gender which I feel at this point is not a big deal. She

understands concepts very well and can follow simple instructions

(Multiple steps) but has a hard time getting the thoughts to words.

just cannot put multiple sentences together or come up with

the agatives & pronouns one might expect from a child her age. "

Actually if your child is apraxic, all

could just be par for the course for apraxia.

Children with apraxia do go through normal developmental patterns of

speech acquisition in some ways, however it's so painfully slow it's

hard to see that unless you look at this group of children as a

group and over time.

Here is something I put together for The Late Talker book that was

reviewed by many PhDs and neuroMDs and found to be quite

interesting. You may spot your child's path of development in here.

~~~~~~~~~~~~~~~~~~start of archive

I first wrote this over two years ago in January 2002 for inclusion

in The Late Talker as parent observed stages of apraxia viewed

through our grouplist. This list was approved by all CHERAB

advisors

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

(but needed cleaning up which I never did)

We ended up not including this in The Late Talker because even

though approved, in the final cut we needed to edit out almost 300

pages for our book, and this included awesome pages that were

already completed. Dr. Marilyn Agin, Malcolm Nicholl and I chose to

leave in only the most critical information for a parent of a newly

diagnosed apraxic child to know.

I still don't want to clean this up, or change from my original

writing from over 2 years ago -so here it is, what I still stand by

and what still needs to be studied in my opinion and what I'd travel

to hear a researcher explain:

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

" Just like typically developing speech in a child, a child with

apraxia appears from the members of our large Foundation to have

stages they go through -and some children skip one or two -or pass

through some of them quickly or get stuck in one or more of them.

We don't know if all the member's children were properly diagnosed

with apraxia or not, but this may be worth looking into.

OBSERVED APRAXIA STAGES (?) THAT SHOULD BE EXPLORED FURTHER

Stage 1

non verbal stage

Where the child uses one or two sounds to communicate everything with

gestures, and made up elaborate sign. At this stage, depending on

the infant's or child's age you may not be able to diagnose verbal

apraxia, but neurological soft signs should be looked for, as well

as signs of oral motor problems or oral apraxia. An older apraxic

child who is stuck at this stage will be using augmentative devices

and could be at risk for misdiagnosis of cognitive ability if not

tested appropriately.

Stage 2

simple talk stage

Where the child begins to just like a typically developing child

learn new sounds or words, but unlike a typically developing child,

most (not all) appear to forget how to say the sounds or words

again, so they lose that ability to " build " their speech like most

other children do. This is in most cases the only stage that is

acknowledged by ASHA and described by most of the speech

professionals*. Please see examples above (breaks down with

longer utterances, etc.) An older apraxic child who is stuck at

this stage will be using augmentative devices and could be at risk

for misdiagnosis of cognitive ability if not tested appropriately.

Stage 3

Dysfluency stage

Where the child who seemed to be progressing so well suddenly begins

to stutter. Most speech professionals do not consider

classic " stuttering " only a normal developmental dysfluency.

However with apraxic children this stage is especially frustrating

in that if the apraxic child does go through this stage, they appear

to get " stuck " here. In speaking to members from the CHERAB

Foundation who's apraxic child goes through this stage, there is

frequently another member of the family who is a stutterer, which

may mean there is some type of genetic link. Type of therapy to

provide to an apraxic child at this stage that is appropriate is not

clear and depends on which expert you speak to-in some cases there

are direct oppositional views.

Stage 4

Baby Talk stage

Where the child who is now talking and being understood continues to

mix up past and present tense, as well as sentence structure, and

frequently will leave out the " little words " like " the " and " a " .

This may not have anything to do with SLI as discussed above, an

apraxic child typically does keep sentences shorter than average,

but there may be children diagnosed in the SLI area that are

apraxic, and visa versa -and being there is a genetic link

to both SLI as well as apraxia, a closer look needs to be taken at

this stage. A five year old apraxic child who receives appropriate

therapy, including some of the recent discoveries we will talk about

later, may progress faster than previously stated, however just like

in the previous stage, apraxic children also seems to get stuck in

this stage. An example would be " Me want doe too " for " I want to

go too " or " Mommy me walk store too? " for " Mommy can I walk to the

store too? "

Stage 5

Full language stage

Where the child, teenager, or adult apraxic has learned strategies to

overcome the apraxia enough that it's not noticed by the average

listener. However upon closer observation you will notice that an

apraxic in the full language stage will frequently use less

sophisticated language. An example comes in right here. Instead of

saying " an apraxic in the full language stage will frequently use

less sophisticated language " they may say " an apraxic in the full

langwish stage will not sound as grown up most of the time " So in

other words, there will still be words that he or she can not

pronounce correctly, and being aware of them, will avoid them and

substitute when they can. They can be highly intelligent, but due

to their lack of expressing themselves using sophisticated language

at times others may not know this. This is perhaps in some ways

just as frustrating a stage as any other. In some cases maybe more

so because now that they are " talking " and talking fine most of the

time, ASHA professionals may not consider them candidates for

further services. The genetic possibilities and medical involvement

needs to establish these stages, including this one, so the

population can understand and accept this disability just like they

do for those with poor eyes or poor hearing. This is an example of

a late talker that unfortunately for all did not " just start talking "

Stage 1: Most professionals don't know how to diagnose oral or

global apraxia, or diagnose suspected verbal apraxia in this stage.

This is the way almost all professionals as well as online sources

were back in 1999 when Tanner was first diagnosed. If we knew then

what we know today through CHERAB and The Late Talker -Tanner could

have had early intervention from when he first regressed at 11

months old. Can't change that which is sad -but for that reason I

continue to do what I do to raise awareness.

Stage 2: The only stage talked about (and talked about and talked

about) This is what I call the " around the corner " stage which is

covered well...well for the most part -but still the soft signs -the

multifaceted aspects are typically left out by most -soft signs like

the hypotonia, sensory integration dysfunction (called DSI instead

of SID so as not to confuse it with the sudden infant death syndrome

which my oldest son Dakota was at risk for), oral apraxia and other

motor impairments even just mild one in other areas of the body -and

new to our attention stuff like constipation and trouble blowing

their nose on command. Just today Glenn and I were driving the

boys to school and Tanner needed to blow his nose. 'Most' of the

time now today Tanner knows how to blow his nose due to lots of

practice. But like anything with apraxia -most of the time doesn't

necessarily mean all the time. I handed Tanner a tissue and he put

it up to his nose and breathed out through his mouth. I said " No

Tanner -use your nose to breath out silly! " I then helped him and

he breathed out of his nose softly -not enough to do anything. So I

said " OK you have to breath out harder so breath in and then breath

out really deep OK? " Tanner breathed in really deep and when he

went to breath out I took the tissue and really quick stuck it up to

his nose before he could breath out -but that didn't work either

because we both started laughing. Then he sneezed.

Stage 3 and 4 -not all children go through -but too many do to leave

them out, or the child is diagnosed with something else. As I know

with Tanner through Dr. Dale -Tanner's dysfluency stage was

not classic stuttering and as Dr. said " You are correct

that we have done an injustice in not studying apraxia in children

enough yet. For this reason we don't know what is 'normal' for an

apraxic child as to how long they will stay in the developmental

stage of dysfluency, but we are finding it can be quite long "

And Stage 5 -that's the one where parents see their child as " cured "

and even though they may leave the group at stage 3-5 -most leave at

5 not realizing there are strategies for older children/teens and

adults in this stage too.

EFAs speed things up a bit so children may advance quicker -but

again EFAs are not a cure -or not a complete cure. I'd like to add

to that neither is therapy a cure. Apraxia is an impairment that

one can learn to overcome and live a successful life with. Just

like a stutterer -those that don't know may not even be aware there

was any type of impairment of speech.

~~~~~~~~~~~~~~end of archive

=====