newbie

[Guest guest]

>

> Hi, I'm new here. I have chronic fatigue syndrome

HNI No-Fenol enzyme eliminated most of my CFS. Apple cider vinegar

and removing milk eliminated the rest. I am now chelating myself with

ALA, which has eliminated my need for all of those things.

Dana

[Guest guest]

Hi,

A gal named Crystal maintains a list by location of physicians who prescribe LDN

and of pharmacies that compound it. You can contact her at

crystalangel6771@...

If that doesn't work out, you can buy 50 mg Naltrexone without a prescription

tablets here:

http://tinyurl.com/2vfdw5

and convert them to LDN using the instructions here:

http://tinyurl.com/3alm3y

For more information about LDN, visit

http://tinyurl.com/2boot2

With best wishes,

Dudley Delany

dudley_delany

[low dose naltrexone] newbie

hi,

i'm looking for a doctor to work with LDN in Indiana. I tried one that I

found after

searching the archives, but was unable to reach him at that number and another

number i

found for him.

any suggestions?

thanks

[Guest guest]

Try emailing Crystal and ask her. She maintains a list of LDN

prescribing doctors. May have to wait a few days for her answer as

she's attending the LDN Confernece in Nashville being held this

Saturday.

crystalangel6771@...

Art

--

>

> hi,

> i'm looking for a doctor to work with LDN in Indiana. I tried

one that I found after

> searching the archives, but was unable to reach him at that number

and another number i

> found for him.

> any suggestions?

> thanks

>

[Guest guest]

There are two people that have lists of known doctors that prescribe. crystalangel6771@... or wkendz32@...

[low dose naltrexone] newbie

hi,i'm looking for a doctor to work with LDN in Indiana. I tried one that I found after searching the archives, but was unable to reach him at that number and another number i found for him.any suggestions?thanks

Internal Virus Database is out-of-date.Checked by AVG.Version: 7.5.430 / Virus Database: 268.14.6/536 - Release Date: 11/16/2006 3:51 PM

[Guest guest]

Art I sent her info earlier today. mjh

Posted by: "Art Hansen" rtee54@... rtee54

Thu Oct 18, 2007 3:58 am (PST)

Try emailing Crystal and ask her. She maintains a list of LDN prescribing doctors. May have to wait a few days for her answer as she's attending the LDN Confernece in Nashville being held this Saturday.See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Hi ,

This is what I know. Rheumatoid Arthritis, is RA Postitive

Usually. You have Rheamatoid Nodules at some point, you have pain on

both sides of the body. It it very much like Pa... where it can effect

other organs in addition to Joints. With Pa, you have 5 different

patterns that in a course of time can overlap. ( most of pa people do

not have errosive problems) But some do take that path. So then we have

RA symptoms..if we have 5 areas effected at the same time.( I have

about 5 affected at the same time.. but the pain rotates.(mild to

moderate )The cold seams to really bring it on..as with weather changes

in general.. So not sure at this point exactly if this is the same.I had

a cortisone shot in the ankle recently.I may have been affected since I

was a kid with arthritis first. and had long remissions. A long time

ago I had the low back pain..( WICKED) But did not last. It made a

reappearance briefly. Not as bad. With Pa.. overall it seems that we get

more of a break if we are lucky. We are RA Negative. have elevated sed

an elevated crp that are similiar in inflamation readings. I also no

that the early your symptoms the more likely you will have problems.Like

with everything , live long enouph with something and your bound to have

complications. Makes sense, more time for damage. But .... I am hopefull

since I have a diagnosis ( which is recent) So now I worry less with

what is it.. But what can I do to lesson the pain and get on with my

life. Sometimes its hard cause others will see you and not

understand.But you know information is power and their is power in healing.

Hope this helps.

Stay warm and stress free... I know that Nord has us down as a rare

disease.. Its less common of the Inflamatory arthritisis and that may be

because its a slow progressive problem for some. It is seronegative and

resembles so many common everyday issues.. over use, twisted ankle,

slept wrong etc. that it could be underdiagnosed.

Just some thoughts on the problem... I have my long days and my short

days... thats my pattern of coping.Otherwise I would be in trouble. So I

pace myself. I do not like the cold weather, I feel like a creaky tree.

Will someone hug me!

[Guest guest]

consider yourself hugged!....casey

<mary@...> wrote:

So I pace myself. I do not like the cold weather, I feel like a creaky tree.

Will someone hug me!

[Guest guest]

If it isn’t too late I would really

advise you to stay is the military. We are military (21 years). I

have a 20 yo dd, 19 dd (bipolar, ODD, ADHD and anything else you want to

add at the moment), 17 dd (severe depression that medication helps but doesn’t

control), and 15 ds (Asperger, ADHD, Sensory integration disorder, etc). I

don’t know what I would have done without Tricare. My son has done

well over the years with deployments. What we have done is had a man in

the church take him and spend some “man time” with him every other

weekend. We keep routines pretty much the same whether or not my husband

is here. My dh is Coast Guard and is here a month and gone 6 weeks so it

is really crazy. I take care of 95% of the discipline even when he is

home just to keep things coherent. By that I don’t mean that he

sends them to me but if we are both in the room I handle the situation. I

can’t say that it has been easy, but with a good support system you can

do it. My main problem was my bipolar daughter. I couldn’t

get a babysitter to come more than once because of her.

Jolinna

From: [mailto: ] On Behalf Of maddness2407

Sent: Monday, November 26, 2007 8:43 PM

Subject: ( ) newbie

hi, my name is megan

and i have two children skye (9 & adhd) and raine

(6 & high function autistic and adhd). up until three months ago we

were told raine had sensory integration issues and now it has

changed/ they told us if he had not had a speech delay when he was

younger he would have been diagnosed with aspergers/ my dh Marchal is

leaving the military after ten years where i felt kinda protected at

least as far as ds medical/ but dh would be going out to sea and a

tour is five years off and on/ and as you all know my ds can not

handle that kind of constant change/ so here we go and i have to say

all the post i read are kinda scaring me / there are all these terms i

dont understand and to be honest i dont know where to start/ he had an

iep for the sensory and adhd will that change now / i want to do the

best for him but oh my how do i learn all of this i will keep reading

and maybe post thanks megan

[Guest guest]

Cheryl! Hello from Colorado:) Good to see you here. We just started

Peptizyde yesterday so I have little to report yet...haven't

challenged anything in the diet yet as we're waiting to see if there

will be any reaction to the enzyme. Good luck on this new journey:)

Leah

>

> Hello all -

>

> I'm new to the board, been up all night reading Autism and

Enzymes.

> I'm on the hunt for a new avenue to improve my son's stimming and

> other increasing sensory issues. It seems that the longer we

follow

> the DAN protocol, the stimmier and more autistic he gets!

>

> Is this common or is this my quirky kid?

>

> Do most of you all try Peptizyde and Zyme Prime together before

each

> meal? I'm considering witholding all supplements for a while and

just

> trying enzymes for a couple of weeks.

>

>

> Cheryl

>

[Guest guest]

That sounds like my son. he only tolerates enzymes and he gets way worse with

supps and

I'm sure everyone on this site is sick of hearing about it ! I wish more

people in the

autism community would talk about this issue. I don't have any real advice but

we had to

not do supps right now. With supps he is a stimming, spacey mess, without supps

he is

more mellow, sometimes nearly typical (but that can come and go) and happier.

Unfortunately, we are on a very limited diet due to so many food intolerances

and I am not

comfortable with our situation right now- at all! I worry about his nutrition

and I know he

needs the very vitamins his body is rejecting. It seems like our next step is

going to be

some sort of detox or chelation but I don't know what I will choose yet. It

seems some kids

are able to tolerate supps and more importantly, a broader diet once the toxin

level has

been reduced in their little body.

Any way welcome! There is a lot to learn here and it's the most useful site I've

found. keep

reading old posts and searching for info that your looking for, you'll probably

find it on

this site.

Dani

>

> Hello all -

>

> I'm new to the board, been up all night reading Autism and Enzymes.

> I'm on the hunt for a new avenue to improve my son's stimming and

> other increasing sensory issues. It seems that the longer we follow

> the DAN protocol, the stimmier and more autistic he gets!

>

> Is this common or is this my quirky kid?

>

> Do most of you all try Peptizyde and Zyme Prime together before each

> meal? I'm considering witholding all supplements for a while and just

> trying enzymes for a couple of weeks.

>

>

> Cheryl

>

[Guest guest]

Try going to Danasview.net and see if that could help you a little. She has

really good info on stimming and all the issues we deal with.

Re: Newbie

That sounds like my son. he only tolerates enzymes and he gets way worse with

supps and

I'm sure everyone on this site is sick of hearing about it ! I wish more

people in the

autism community would talk about this issue. I don't have any real advice but

we had to

not do supps right now. With supps he is a stimming, spacey mess, without supps

he is

more mellow, sometimes nearly typical (but that can come and go) and happier.

Unfortunately, we are on a very limited diet due to so many food intolerances

and I am not

comfortable with our situation right now- at all! I worry about his nutrition

and I know he

needs the very vitamins his body is rejecting. It seems like our next step is

going to be

some sort of detox or chelation but I don't know what I will choose yet. It

seems some kids

are able to tolerate supps and more importantly, a broader diet once the toxin

level has

been reduced in their little body.

Any way welcome! There is a lot to learn here and it's the most useful site I've

found. keep

reading old posts and searching for info that your looking for, you'll probably

find it on

this site.

Dani

>

> Hello all -

>

> I'm new to the board, been up all night reading Autism and Enzymes.

> I'm on the hunt for a new avenue to improve my son's stimming and

> other increasing sensory issues. It seems that the longer we follow

> the DAN protocol, the stimmier and more autistic he gets!

>

> Is this common or is this my quirky kid?

>

> Do most of you all try Peptizyde and Zyme Prime together before each

> meal? I'm considering witholding all supplements for a while and just

> trying enzymes for a couple of weeks.

>

>

> Cheryl

>

________________________________________________________________________________\

____

Looking for last minute shopping deals?

Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

[Guest guest]

> I'm new to the board, been up all night reading Autism and Enzymes.

> I'm on the hunt for a new avenue to improve my son's stimming and

> other increasing sensory issues. It seems that the longer we follow

> the DAN protocol, the stimmier and more autistic he gets!

What are the stims?

At my house, most sensory issues were related to yeast overgrowth

http://www.danasview.net/yeast.htm

Dana

[Guest guest]

Dana -

His favorite stim is flipping objects, and he's also started to flip

his wrist. This has gotten worse in the last five days since

starting enzymes, along with increased hyperactivity and restless

sleep.

Cheryl

> > I'm new to the board, been up all night reading Autism and

Enzymes.

> > I'm on the hunt for a new avenue to improve my son's stimming

and

> > other increasing sensory issues. It seems that the longer we

follow

> > the DAN protocol, the stimmier and more autistic he gets!

>

>

> What are the stims?

>

> At my house, most sensory issues were related to yeast overgrowth

>

> http://www.danasview.net/yeast.htm

>

> Dana

>

[Guest guest]

Cheryl,

When I first started my son on enzymes, he would move his fingers like he was

feeling the

air. It was strange but my mother's intuition felt like it was a good sign

because he was

starting to really " feel " again. It's like he was being uncovered from a heavy

blanket for the

first time. My son was really hyper, kind of bouncing off the walls for about

2-3 weeks

after we started enzymes and we started very low and slow. He seemed pretty

happy

though but it was just like everyhting was moving in fast motion for him at

first.Before

enzymes, my son was so fogged out and spacey, he could hardly reach for a toy.

It took us

3 months before he could tolerate a full no-fenol! If your son looks scared or

uncomfortable then I would of course lower the dose and go even a little

slower. However,

increased stimming and hyperness is common when just starting out with enzymes.

If he

just seems a little more nutty I wouldn't worry. We couldn't give our son

no-fenol

anywhere near bed time for a month or so but now it actually helps him sleep.

Good luck and I hope your guy enjoys full health soon.

Dani

> > > I'm new to the board, been up all night reading Autism and

> Enzymes.

> > > I'm on the hunt for a new avenue to improve my son's stimming

> and

> > > other increasing sensory issues. It seems that the longer we

> follow

> > > the DAN protocol, the stimmier and more autistic he gets!

> >

> >

> > What are the stims?

> >

> > At my house, most sensory issues were related to yeast overgrowth

> >

> > http://www.danasview.net/yeast.htm

> >

> > Dana

> >

>

[Guest guest]

> Dana -

> His favorite stim is flipping objects, and he's also started to flip

> his wrist. This has gotten worse in the last five days since

> starting enzymes, along with increased hyperactivity and restless

> sleep.

Which enzymes? What are the ingredients?

Dana

[Guest guest]

Welcome! I'm a single mom too and my son is 11. He was originally diagnosed w/ ADHD at age 5 and Asperger's just recently. I think he's grown out of the ADHD diagnosis though. Asperger's makes a bunch more sense, but he has a mild form of it.

My son's dad and his wife have a very different parenting style than I do. All-in-all, we have a positive relationship and I try to keep it that way whenever I can. I do think his dad is quick to judge what I'm doing w/ our son at times w/out actually getting involved enough to be a part of the solution. So I try to listen to what he says with a grain of salt. It's important to listen, but Dylan lives with me full-time and I make all of his medical and school decisions so at the end of the day, I have to make the decision (and live w/ the consequences if I get it wrong!)

You'll get a lot of support here. We are all used to advocating for our children and have strong (and different!) opinions at times, but bottom line is that we care and are here to support each other.

Take care,

( ) Newbie

Hi all. I am new to the group, and wanted to introduce myself andkind of give a back ground of where I have been and am going (I think). My name is Lori and I am a mother from n IA with a 13 y/o sonwho within the last few weeks was diagnosed w/ AS. All of this is sonew to me, I am not sure where to begin. My son has had trouble sincebirth with speech and has been in speech therapy since he was 2. Hestill stuggles and still goes to speech. He is in 7th grade. There is so much more to the story that I can only type snipits ofthis at a time because it really started so long ago. The other partof this is he has a split family. He has a step dad and step mom. His dad and I have been divorced for 8 years and we are a good teamfor him. But we don't see eye to eye on some things (like homeschooling) and it's difficult for me to approach that issue with hisdad. Long story short he thinks that he

will lose his socializationskills. I don't feel that way at all. So with this little bit ofinfo I will start with this... I just need to talk to others who areexperiencing some of the same things I am and just need support. Thanks for reading/listening for now. Lori

[Guest guest]

Hi Lori. I'm Robin.....from Wi. My son, Ian, is 11 and he has AS and ADHD. Welcome!!! beannkoch <beannkoch@...> wrote: Hi all. I am new to the group, and wanted to introduce myself andkind of give a back ground of where I have been and am going (I think). My name is Lori and I am a mother from n IA with a 13 y/o sonwho within the last few weeks was diagnosed w/ AS. All of this is sonew to me, I am not sure where to begin. My son has had trouble

sincebirth with speech and has been in speech therapy since he was 2. Hestill stuggles and still goes to speech. He is in 7th grade. There is so much more to the story that I can only type snipits ofthis at a time because it really started so long ago. The other partof this is he has a split family. He has a step dad and step mom. His dad and I have been divorced for 8 years and we are a good teamfor him. But we don't see eye to eye on some things (like homeschooling) and it's difficult for me to approach that issue with hisdad. Long story short he thinks that he will lose his socializationskills. I don't feel that way at all. So with this little bit ofinfo I will start with this... I just need to talk to others who areexperiencing some of the same things I am and just need support. Thanks for reading/listening for now. Lori

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

Welcome Lori YOU will love this group!

for AWESOME Autism gear look here!

http://www.cafepress.com/autismawarenes

for some strong attitude gear look here!

http://www.cafepress.com/stronggear

-- ( ) Newbie

Hi all. I am new to the group, and wanted to introduce myself andkind of give a back ground of where I have been and am going (I think). My name is Lori and I am a mother from n IA with a 13 y/o sonwho within the last few weeks was diagnosed w/ AS. All of this is sonew to me, I am not sure where to begin. My son has had trouble sincebirth with speech and has been in speech therapy since he was 2. Hestill stuggles and still goes to speech. He is in 7th grade. There is so much more to the story that I can only type snipits ofthis at a time because it really started so long ago. The other partof this is he has a split family. He has a step dad and step mom. His dad and I have been divorced for 8 years and we are a good teamfor him. But we don't see eye to eye on some things (like homeschooling) and it's difficult for me to approach that issue with hisdad. Long story short he thinks that he will lose his socializationskills. I don't feel that way at all. So with this little bit ofinfo I will start with this... I just need to talk to others who areexperiencing some of the same things I am and just need support. Thanks for reading/listening for now. Lori

[Guest guest]

Hi, Lori...I am Ruthie....we are moving to n in 3 weeks (in C.R. now)---I would love to talk and anything else you need; I have TONS of information and ideas.....feel free to e-mail me privately, and I can give you our number to call me. DOLEZAL123@...

It IS overwhelming but there are LOTS of wonderful resources, waivers, etc. available to us; n has a home school assistance program with over 700 families in it, and there are groups in our area, etc....

Let me know how we can help; we would be happy to....we have a 14 and 6 year old aspergers sons and a n.t. five year old son. Lots and lots and lots of experience, advocating, etc......we are very involved parents, and currently do all kinds of services for our children; I am a registered childcare provider in my home and my husband works five minutes away (and comes home if I need him to to help with our sons----it is rare but sometimes one of them needs more than I can do alone---or alone while running my daycare----).....we have tutors (and great names for that), great professionals and I would be happy to help you any way I can.

Ruthie Dolezal

Re: ( ) Newbie

Hi Lori.

I'm Robin.....from Wi.

My son, Ian, is 11 and he has AS and ADHD.

Welcome!!!

beannkoch <beannkoch > wrote:

Hi all. I am new to the group, and wanted to introduce myself andkind of give a back ground of where I have been and am going (I think). My name is Lori and I am a mother from n IA with a 13 y/o sonwho within the last few weeks was diagnosed w/ AS. All of this is sonew to me, I am not sure where to begin. My son has had trouble sincebirth with speech and has been in speech therapy since he was 2. Hestill stuggles and still goes to speech. He is in 7th grade. There is so much more to the story that I can only type snipits ofthis at a time because it really started so long ago. The other partof this is he has a split family. He has a step dad and step mom. His dad and I have been divorced for 8 years and we are a good teamfor him. But we don't see eye to eye on some things (like homeschooling) and it's difficult for me to approach that issue with hisdad. Long story short he thinks that he will lose his socializationskills. I don't feel that way at all. So with this little bit ofinfo I will start with this... I just need to talk to others who areexperiencing some of the same things I am and just need support. Thanks for reading/listening for now. Lori

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

What a kind thing to do for that grandma. I will be homeschooling. I

know it varies state to state but I think the deal with services is

showing thatthe school cannot adequately provide. I don't think they

are required to provide for homeschoolers per se but if you can show

the school services are inadequate then where he is schooled MAY

become irrelevant.

I am skipping that battele because my child is mildly affected

compared to a lot of kids and if I do NACD it will likely be cheaper

to pursue with good results and a homeschool curriculum. It does

bother me not to get services we deserve but I have come to the

conclusion that in the interest of sef-preservation NACD and diet are

my main focus.

>

> Hi

> My name is Miriam. I babysit an almost 3yro who was just diagnosed

> with Global Developmental Delay and apraxia. I homeschool my 2

> children (7 and 4) and we are with 60hrs. a week so he

feels

> more like part of the family than just a kid we babysit.

> lives with his grandmother and she was devastated with the

> news we just recieved so I am collecting as much info as I can for

> her during this hard time.

> had been recieving 1 EI visit a week but will now be

> recieving 4 ST visits a week until he begins school. Because of the

> Global Delays he will be recieving OT and PT as well.

> One of our problems is that his grandmother does not want him in

> school yet. Do any of you recieve services at home after your

childs

> 3rd birthday?

> I am very appreciative of all the information that has been

compiled

> on this list. I am very into healing with foods so the dietary info

> is great.

> Are there anyother homeschoolers on this list? and how do you

obtain

> your services?

> Thanks for all the help!

> Miriam

>

[Guest guest]

Hi Miriam,

Are you referring to homeschool preschool?

I had my first EI/School District transition meeting a couple or weeks ago, and

I told them that I did not want to send my son to the district's preschool

program. At this point they seem ok with that, and will hopefully render

services (ST and OT). From what I understood from someone that I spoke with

(affiliated with an agency that understands the special ed law), since preschool

is not mandatory, special needs kids can receive needed services without having

to attend public preschool. It's after the child becomes of school-mandated age

that things become tricky.I told the district that I have another preschool

program set aside for my son, and I gave them a list of reasons why this program

is a better fit than the school district's program (i.e. the private program is

multi-aged, small group, with tons of outdoor play). BUT, we will see in a

couple of months.....what they're going to actually agree to.

Hope this helps,

@...: lizlaw@...: Mon, 28

Jan 2008 16:31:15 +0000Subject: [ ] Re: Newbie

What a kind thing to do for that grandma. I will be homeschooling. I know it

varies state to state but I think the deal with services is showing thatthe

school cannot adequately provide. I don't think they are required to provide for

homeschoolers per se but if you can show the school services are inadequate then

where he is schooled MAY become irrelevant. I am skipping that battele because

my child is mildly affected compared to a lot of kids and if I do NACD it will

likely be cheaper to pursue with good results and a homeschool curriculum. It

does bother me not to get services we deserve but I have come to the conclusion

that in the interest of sef-preservation NACD and diet are my main focus.>> Hi> My name is Miriam. I babysit an almost

3yro who was just diagnosed > with Global Developmental Delay and apraxia. I

homeschool my 2 > children (7 and 4) and we are with 60hrs. a week so he

feels > more like part of the family than just a kid we babysit.> lives

with his grandmother and she was devastated with the > news we just recieved so

I am collecting as much info as I can for > her during this hard time.>

had been recieving 1 EI visit a week but will now be > recieving 4 ST visits a

week until he begins school. Because of the > Global Delays he will be recieving

OT and PT as well. > One of our problems is that his grandmother does not want

him in > school yet. Do any of you recieve services at home after your childs >

3rd birthday? > I am very appreciative of all the information that has been

compiled > on this list. I am very into healing with foods so the dietary info >

is great. > Are there anyother homeschoolers on this list? and how do you obtain

> your services?> Thanks for all the help!> Miriam>

_________________________________________________________________

Climb to the top of the charts! Play the word scramble challenge with star

power.

http://club.live.com/star_shuffle.aspx?icid=starshuffle_wlmailtextlink_jan

[Guest guest]

Not necessarily true. In NJ you have to go to the preschool to get

services unless you can make a showing that services beyond what is

available there are warranted. Difficult to do with what we have

left, articulaton.

>> Hi> My name is Miriam. I babysit an

almost 3yro who was just diagnosed > with Global Developmental Delay

and apraxia. I homeschool my 2 > children (7 and 4) and we are with

60hrs. a week so he feels > more like part of the family than

just a kid we babysit.> lives with his grandmother and she

was devastated with the > news we just recieved so I am collecting as

much info as I can for > her during this hard time.> had been

recieving 1 EI visit a week but will now be > recieving 4 ST visits a

week until he begins school. Because of the > Global Delays he will

be recieving OT and PT as well. > One of our problems is that his

grandmother does not want him in > school yet. Do any of you recieve

services at home after your childs > 3rd birthday? > I am very

appreciative of all the information that has been compiled > on this

list. I am very into healing with foods so the dietary info > is

great. > Are there anyother homeschoolers on this list? and how do

you obtain > your services?> Thanks for all the help!> Miriam>

>

>

>

>

>

>

> _________________________________________________________________

> Climb to the top of the charts! Play the word scramble challenge

with star power.

> http://club.live.com/star_shuffle.aspx?

icid=starshuffle_wlmailtextlink_jan

>

>

[Guest guest]

Hi-- (wasn't sure of your name so I couldn't address you directly-- sorry!)

Your boys sound very much like my Asa. (who is 3 1/2 now)

We home school, so we've never had him in a special preschool program since

it basically would open a huge can of worms for us being home schoolers.

In a nutshell-- here are my thoughts. I think that YES, your boys need more

than what they are providing.

Personally speaking, I feel that 5 1/2 hrs in a school setting may just be

too much for them, like you mentioned, so if you don't see that it's

benefitting them as it should be (weighing the pros and cons) then you can

ALWAYS meet

their needs through different ways and venues outside of the school. That's

something that many parents don't remember, and I think it's vital to keep in

the back of your mind as you process through things.

I won't get into a public school or private school debate since this is

definitely not the place for it, but speaking from personal experience and

knowledge, and also knowing many families who deal with this same issue-- the

public schools cannot provide what our kids will need 100%. It's just nigh

impossible for them, due to lack of funds, lack of resources, lack of teachers,

etc--- it's just too difficult for all of their needs to be met.

So I personally do feel that your boys would benefit from OUT of school

sessions.

Just in reading what they're doing-- not knowing them personally or how they

would react to those sessions that they have-- I have to say my instinct

tells me that they are NOT getting enough speech, and most likely not getting

enough OT either.

The children who reach into the levels of Apraxia/Dyspraxia with the GLOBAL

Apraxia (or Developmental Dyspraxia/Apraxia) truly need more therapy

sessions than someone who would only have the verbal apraxia of speech. Their

challenge is a larger one on the scope-- for a lack of better words.

I mentioned that we don't have my son in a special preschool-- but here are

the services that we do for him outside of the system and how often. Keep in

mind that all of our kids are different and they respond differently (and with

different timing) to the therapies.

And for what it's worth-- we plan on adding MORE to this as well, but in

different ways (see my after thoughts)

Monday- 1 hr Session of Speech with PRIVATE SLP (one-on one)

Tuesday- 1/2 hr Physical Therapy at the CCD (one-on-one)

1/2 hr Occupational Therapy at the CCD (one-on-one)

1/2hr Speech at the CCD (one-on-one)

Thursday- 1/2 hr PT at CCD again

1/2 hr OT at the CCD again

Friday- 1 hr session of Speech with private SLP

1 hr session of Gymnastics (group of same aged peers-- without

disabilities)

Now-- that is 3 sessions of speech totaling 2 1/2 hrs, and he definitely

needs more. The negative of having the private SLP is that it's not always a

GUARANTEED time on Mon since it varies with her family's needs, so sometimes it

will be less. The BENEFIT of the private SLP is that she is amazing and she

can work his butt (or should I say MOUTH? lol) better than anything I've

ever seen, and it's also a concentrated HOUR of work for him. I have to say

that I feel that the 1/2 sessions are pretty much a total wash. The gal he

works with at the CCD is good enough in what she does-- it's just not enough

time

to make much of an effect on him overall. So we are looking to add MORE in

regards to speech.

Which leads me to my after thoughts of WHAT we are looking to add. Since my

son has the Global Apraxia, he has serious need for ST, OT and PT. (his

physical issues started with an actual physical/orthopedic problem that now has

turned into a problem for him related to the neurological issues)

So-- we were looking into Hippotherapy (spelling?) which is therapy on

Horseback. There is a woman locally who is a qualified SLP who does ST and

Hippotherapy combined-- so for my son, this sort of thing would benefit him

with

speech, OT AND PT-- and it's outside and it's FUN, so we feel the money is

best spent in this direction as compared to sitting in the classroom for hours

each day.

Do you know what I mean?

It really does depend on your sons' needs and also what your finances will

allow, and what you feel is right for your family. It definitely sounds as

though they would benefit from MORE therapy, especially with speech and OT, but

I would look into ways that they can have it in more of a FUN aspect, since

they are already in a school environment. Hope this makes sense

Please feel free to contact me off-list if you have any questions or if I

can help with anything else-- it sounds as though our boys have similar issues,

and if I can help with short cuts-- I'd be happy to

becky

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[Guest guest]

Since it sounds like it is a long week for them already, if you can

do it, getting the right therapy in school would be best timewise and

for your pocketbook. Can you describe your boys in greater

detail...what they can do, what they can't do? If you do that I am

sure many of the veterans on this board can help you get a clearer

picture of what they need so you can better assess what may or may

not need tweaking. Some questions to spark your discussion of them:

1) Do they sleep well, tire easily?

2) Can they focus well? Would more one on one therapy be realistic?

Can they focus for longer than 15 minutes? If not maybe a longer

session can be broken up into minisessions throught the week.

3) What is the current therapy? Is it useful? Do they give homework?

4) What is the cost of private therapy for apraxia in your area? Can

you swing it and if so is it worth it or would you be better off

financially and therapeutically with an NACD type program? If so, do

you have the time to devote to something like that.

5) Do your children have other needs...do they need OT...have

coordination issues?

If these questions are overwhelming please hang in there and talk it

out with all of us. We are all here to help each other. If you don't

want to lay all this out here and want to email me offlist you are

welcome to do so. No expert mind you. Just a mom on a mission.

>

> I'm a father of twin boys who are 3. I have been told by my school

> district's speech therapist that both have a severe Developmental

> Apraxia.

>

> Both of my boys have been tested and found to be below the 1% for

> speech. Fortunately, on the other hand their language skills are

off

> the charts. They use language and understand it like crazy but

their

> speech is unintelligible.

>

> They have been attending the special ed program at our school.

They

> attend five days a week for appx. 2 1/2 hours w/ appx. 11 other

> children. Twice a week they are removed from their class to have a

> speech session w/ a therapist. They attend this session w/ another

> child. They are also removed from the class for Occ. Therapy and

> Physical Therapy due to gross/fine motor skill delays.

>

> I'm starting to wonder if this is enough. Five days for 2 1/2

hours

> is a lot for my boys. It's the amount of (or lack of) individual

> attention that concerns me. My boys are described as very bright

and

> able to maintain their attention during class. I'm wondering if

> anyone has any thoughts on if I should seek additional speech

therapy

> outside of the school district. I'm wondering if this will help or

> even cause more problems - IE - two therapist teaching different

> methods.

>

> Thanks.

>

[Guest guest]

If you can, I would also try and get private speech for the boys.

I do this with my son but I make sure the therapists are both on

the same page.

Fortunately the slp's both work out of the same office so they had

offered to keep each other updated and work together on goals

for my son.

Sandy

[ ] Newbie

I'm a father of twin boys who are 3. I have been told by my school

district's speech therapist that both have a severe Developmental

Apraxia.

Both of my boys have been tested and found to be below the 1% for

speech. Fortunately, on the other hand their language skills are off

the charts. They use language and understand it like crazy but their

speech is unintelligible.

They have been attending the special ed program at our school. They

attend five days a week for appx. 2 1/2 hours w/ appx. 11 other

children. Twice a week they are removed from their class to have a

speech session w/ a therapist. They attend this session w/ another

child. They are also removed from the class for Occ. Therapy and

Physical Therapy due to gross/fine motor skill delays.

I'm starting to wonder if this is enough. Five days for 2 1/2 hours

is a lot for my boys. It's the amount of (or lack of) individual

attention that concerns me. My boys are described as very bright and

able to maintain their attention during class. I'm wondering if

anyone has any thoughts on if I should seek additional speech therapy

outside of the school district. I'm wondering if this will help or

even cause more problems - IE - two therapist teaching different

methods.

Thanks.

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