intro

[Guest guest]

Tammy I must of have missed your message.... not that I do a lot of

responding..

Most of the time everyone is asking for help on a level where I haven't

been....

But I'll throw open the front door...hang the welcome sign....and put on the

coffee...

Welcome...pull up a chair to the kitchen table... ; )

I know it may seem that no one reads but you post... but I find that on

allgroups I belong too... there are 95 % readers...and 5% posters : )

Carie

[Guest guest]

Tammy,

I probably also missed your post, sorry. It wasn't intentional but I belong

to 6 different e-groups that I just can't keep myself straight. I also have

half of my stuff in the garage because I moved to CA from MD via TX last

month 12/10 (but was in a hotel til about 12/17/02. I move to where ever it

seems I can benefit my son the most (and actually, I think TX was better

school-wise but his dad is here so my son is happy being w/dad). I also have

a 4 yr old daughter that keeps us all on our toes (including her 6 yr old ASD

brother). I understand a little about having a full plate because my husband

is in the beginning stages of MS.

I wonder if you can post your mag. question on one of the other e-groups like

maybe autism-mercury (if I have the right e-group) and maybe they can tell

you what test to run for mag. deficiency? Sometimes, two doctors on that

e-group even answer some questions.

I don't know if you order from <A

HREF= " www.kirkmanlabs.com " >www.kirkmanlabs.com</A> but maybe they might have

some info on their website (I think they got raided last month by the police

so they are being very cautious w/info on their website and are redoing their

catalog). I trust them as they have worked w/ARI (Autism Research Institute)

for over 20 years.

Hope

> Subj: Re: Intro

> Date: 1/22/03 7:40:29 AM Eastern Standard Time

> From: <A HREF= " mailto:jcurious4now@... " >jcurious4now@...</A>

> Reply-to: <A

HREF= " mailto:Texas-Autism-Advocacy " >Texas-Autism-Advocacy@yahoog\

roups.com</A>

> To: <A

HREF= " mailto:Texas-Autism-Advocacy " >Texas-Autism-Advocacy@yahoog\

roups.com</A>

> Sent from the Internet

>

>

>

> Tammy I must of have missed your message.... not that I do a lot of

> responding..

> Most of the time everyone is asking for help on a level where I haven't

> been....

> But I'll throw open the front door...hang the welcome sign....and put on

> the

> coffee...

> Welcome...pull up a chair to the kitchen table... ; )

>

> I know it may seem that no one reads but you post... but I find that on

> allgroups I belong too... there are 95 % readers...and 5% posters : )

>

> Carie

>

>

[Guest guest]

Tammy,

I'm new to the group also. I am behind on my e-mails because I've had so

much going on with my son in the way of testing that I just haven't had a

chance to catch up. I do find this group informative but I don't comment on

a lot of what is said because I live in a different world than most of the

people on this list seem to be living in. We expect to get a diagnosis of

high-functioning autism for our son. It seems from the posts I've seen

that my son is " better off " than most of the children here so I don't really

seem to have much in common right now. My son is not as affected as the

children here seem to be but yet he is not typical either. We are kind of

in a position where we don't seem to belong anywhere right now. I don't

feel I have the right to vent when I know so many people would give anything

to be in " our world " here. I don't have anything to offer as far as

recommendations go, or even understand the world in which you live in, so I

can't tell you I've been there, etc.

I do hope you find the support here you are seeking. I'm afraid I don't

have anything to offer you, with the exception of lending an ear, because I

am new to the autism world in which you and the rest of the fine people here

live. Feel free to e-mail me privately if you need to talk to someone.

Pam

Intro

I am pretty new to this group. Did I ever introduce myself? My name is

Tammy I have 2 children both in the spectrum. Angel is blind/autistic and

MR

with 's plus syndrome. Rebekah is ADHD/ODD SI and speech impaired.

Togehter they also both share Rieger's syndrome. Angel is 7 she is more

like

a 3-4 year old she is tiny also. Rebekah is 5 she is a little bigger than

Angel but is also small. Rebekah is also like a 3-4 year old. Yep in

alot

of ways it's like having twins.

My husband and I are very close but we have been temporarily seperated for

a

year now. I can't go into much detail as to what why we are seperated for

fear that most of you would take it all wrong. The computer doesn't do

much

justice when trying to relay a story such as this. Let's just say that

the

is only one thing seperating us. It's a very special challenge we have

with

angel and there was no other way for, Oh the misunderstandings if people

heard wind of it lol! Like most of you on this list your in another world

with the special child in your live often mis understood and so fourth.

That's us. The functioning seemly disfunctionally family lol. We are all

very happy though over here. With Angel being severely autsitc though

most

folks think we are all just nutso. there is nothing angel doesn't obsess

over lol and the bigest challenge we have with her right now is her

sleeping.

If I turn over in my bed in my own room it wakes her up. She is then

chasing her cat or wanting to go to school at mid night -4 am lol. The

hardest part is that I live in an apartment and let me tell you if angel

is

awake everyone is awake. She is so noisy and disruptive all hours of the

night. at least she doesn't constantly slam the doors all night or bang

on

the walls as she has before causing us to get evicted from one apartment

complex. we couldn't realy fight that at the time because we didn't know

what all we were dealing with. We first thought it was epilepsy well now

we

know it was autism. We were fine though really we left before we got the

final eviction notice. I was so tired of cops knocking on the door. They

would come to the door with an attidude leave knowing this child was

different and then often return because neighbors would complain and

complain

about her noise. There was nothing we could do at all to sooth her. I

tried

so hard she put me in the hospital at 3 banging her head on me so very

hard.

Se was severely self mutilating she is since cured of that. I am finding

that most of my letters are going un heard like last night I wrote about

the

situation I am in now well not a soul wrote me back so if I didn't

introduce

myself I am sorry. I have so much on my plate that I am often very

forgetful. I don't know how I do it though. You see I normally keep

children in my home as well as care for my own. Babysitting normal health

children has made a big difference in my 2. Anyway, in case you read my

letter last night about Angel's absenses etc. Well, I called the school

today and everything is cool.

I feel much better.

Tammy

[Guest guest]

In a message dated 1/22/2003 11:28:07 AM Central Standard Time,

pamelapotter@... writes:

> Tammy,

>

> I'm new to the group also. I am behind on my e-mails because I've had so

> much going on with my son in the way of testing that I just haven't had a

> chance to catch up. I do find this group informative but I don't comment on

> a lot of what is said because I live in a different world than most of the

> people on this list seem to be living in. We expect to get a diagnosis of

> high-functioning autism for our son. It seems from the posts I've seen

> that my son is " better off " than most of the children here so I don't

> really

> seem to have much in common right now. My son is not as affected as the

> children here seem to be but yet he is not typical either. We are kind of

> in a position where we don't seem to belong anywhere right now. I don't

> feel I have the right to vent when I know so many people would give

> anything

> to be in " our world " here. I don't have anything to offer as far as

> recommendations go, or even understand the world in which you live in, so I

> can't tell you I've been there, etc.

>

> I do hope you find the support here you are seeking. I'm afraid I don't

> have anything to offer you, with the exception of lending an ear, because I

> am new to the autism world in which you and the rest of the fine people

> here

> live. Feel free to e-mail me privately if you need to talk to someone.

>

> Pam

Hi Pam it is nice to meet you. Do not sell your self short any child under

the autism spectrum is a challenge for his/her family and friends. Before

when my child was considered pdd, yes I knew there was much worse cases out

there but what I had was a really impossible child lol at the time anyway.

Also when you have to vent do it because as time goes by if you are like me

and your child's autism worsens you will have to vent in order to stay sane

lol. I for one will listen anytime you have to get something out. Hopefully

you will be lucky and your child will get better instead of worse, but no

matter God gives you what you can handle. Sometime I am sure you to wish

that he didn't have so much confidence in you at times. Also, even with me

dr.s folks have tried to intimidate me and make less of my child's autism

when I know it's difficutl at times because I live with her or rather them.

A child with " just sensory intergration'' can be crazy making for any family

so just because your child is not severely autistic it doesn't make you any

less special or your child any less special.

Tammy

[Guest guest]

Pam, it could get worse but it can also get better. If I knew back then what

I know now, I don't think my son would have gotten worse. I say that because

9 out of 10 things I have tried, have made my son better. When he started on

the spectrum, he was mild and when we went back to redo the testing, he was

worse. He finally went into his own world and wouldn't have much to do w/us.

Then we implemented the ever so expensive GFCF diet, and we got eye contact

and he even wanted to spend time w/us:). Now we are getting appropriate

speech about once a day. Two days ago he told my husband " go away " and

pushed him out of the kitchen. He was in there spooning the pumpkin sauce

(sp) into his mouth, a no no! Today he told the teacher and nurse " I want

mommy " several times. When I got there he ran to me. I think it is the

SuperNuThera that I just started using faithfully everyday. Before the

secretin infusions I did not want to use it daily because of constipation and

even waited a long time after the secretin. He seems to be ok w/it now. I

also think the bovine colostrum has helped somewhat heal his gut. Actually,

so many things have helped. I can't afford everything so there are things I

have yet to try but I plan on doing it as soon as I can afford a local DAN!

doc (my son's old doctors are so far away now that we moved from the East

Coast to the West Coast).

> Subj: RE: Intro

> Date: 1/22/03 7:31:17 PM Eastern Standard Time

> From: <A

HREF= " mailto:pamelapotter@... " >pamelapotter@...</A>

> Reply-to: <A

HREF= " mailto:Texas-Autism-Advocacy " >Texas-Autism-Advocacy@yahoog\

roups.com</A>

> To: <A

HREF= " mailto:Texas-Autism-Advocacy " >Texas-Autism-Advocacy@yahoog\

roups.com</A>

> Sent from the Internet

>

>

>

> Thank you, Tammy! It is nice to meet you, too. When it is YOUR child, any

> disability is a huge deal! We are lucky with in that he is not a big

> behavior problem. Don't get me wrong, he definitely has his moments but

> most kids do. 's disabilities really lie in his speech delay (he'll

> be

> 4 the end of April and he tested at an average of 25 months on

> comprehension

> and communication, so he's about 1 1/2 years behind) and his social

> interaction. He's doing better at that but has started pushing at kids to

> get their attention since he doesn't really understand he should just say,

> " Let's play. " or something like that. I am working on that with him now.

> I

> know he isn't trying to bully the kids because he isn't doing it hard.

> He's

> never been aggressive until his desire to interact increased. I pray the

> autism doesn't get worse. I didn't realize until recently that was even a

> possibility.

>

> I appreciate your offer to lend an ear.

>

> Take care.

> Pam

> Re: Intro

>

>

> In a message dated 1/22/2003 11:28:07 AM Central Standard Time,

> pamelapotter@... writes:

>

> >Tammy,

> >

> >I'm new to the group also. I am behind on my e-mails because I've had

> so

> >much going on with my son in the way of testing that I just haven't had

> a

> >chance to catch up. I do find this group informative but I don't comment

> on

> >a lot of what is said because I live in a different world than most of

> the

> >people on this list seem to be living in. We expect to get a diagnosis

> of

> >high-functioning autism for our son. It seems from the posts I've seen

> >that my son is " better off " than most of the children here so I don't

> >really

> >seem to have much in common right now. My son is not as affected as the

> >children here seem to be but yet he is not typical either. We are kind

> of

> >in a position where we don't seem to belong anywhere right now. I don't

> >feel I have the right to vent when I know so many people would give

> >anything

> >to be in " our world " here. I don't have anything to offer as far as

> >recommendations go, or even understand the world in which you live in,

> so I

> >can't tell you I've been there, etc.

> >

> >I do hope you find the support here you are seeking. I'm afraid I

> don't

> >have anything to offer you, with the exception of lending an ear,

> because I

> >am new to the autism world in which you and the rest of the fine people

> >here

> >live. Feel free to e-mail me privately if you need to talk to someone.

> >

> >Pam

>

> Hi Pam it is nice to meet you. Do not sell your self short any child

> under

> the autism spectrum is a challenge for his/her family and friends. Before

> when my child was considered pdd, yes I knew there was much worse cases

> out

> there but what I had was a really impossible child lol at the time anyway.

> Also when you have to vent do it because as time goes by if you are like

> me

> and your child's autism worsens you will have to vent in order to stay

> sane

> lol. I for one will listen anytime you have to get something out.

> Hopefully

> you will be lucky and your child will get better instead of worse, but no

> matter God gives you what you can handle. Sometime I am sure you to wish

> that he didn't have so much confidence in you at times. Also, even with

> me

> dr.s folks have tried to intimidate me and make less of my child's autism

> when I know it's difficutl at times because I live with her or rather

> them.

> A child with " just sensory intergration'' can be crazy making for any

> family

> so just because your child is not severely autistic it doesn't make you

> any

> less special or your child any less special.

>

> Tammy

>

>

>

[Guest guest]

Thank you, Tammy! It is nice to meet you, too. When it is YOUR child, any

disability is a huge deal! We are lucky with in that he is not a big

behavior problem. Don't get me wrong, he definitely has his moments but

most kids do. 's disabilities really lie in his speech delay (he'll be

4 the end of April and he tested at an average of 25 months on comprehension

and communication, so he's about 1 1/2 years behind) and his social

interaction. He's doing better at that but has started pushing at kids to

get their attention since he doesn't really understand he should just say,

" Let's play. " or something like that. I am working on that with him now. I

know he isn't trying to bully the kids because he isn't doing it hard. He's

never been aggressive until his desire to interact increased. I pray the

autism doesn't get worse. I didn't realize until recently that was even a

possibility.

I appreciate your offer to lend an ear.

Take care.

Pam

Re: Intro

In a message dated 1/22/2003 11:28:07 AM Central Standard Time,

pamelapotter@... writes:

> Tammy,

>

> I'm new to the group also. I am behind on my e-mails because I've had

so

> much going on with my son in the way of testing that I just haven't had

a

> chance to catch up. I do find this group informative but I don't comment

on

> a lot of what is said because I live in a different world than most of

the

> people on this list seem to be living in. We expect to get a diagnosis

of

> high-functioning autism for our son. It seems from the posts I've seen

> that my son is " better off " than most of the children here so I don't

> really

> seem to have much in common right now. My son is not as affected as the

> children here seem to be but yet he is not typical either. We are kind

of

> in a position where we don't seem to belong anywhere right now. I don't

> feel I have the right to vent when I know so many people would give

> anything

> to be in " our world " here. I don't have anything to offer as far as

> recommendations go, or even understand the world in which you live in,

so I

> can't tell you I've been there, etc.

>

> I do hope you find the support here you are seeking. I'm afraid I

don't

> have anything to offer you, with the exception of lending an ear,

because I

> am new to the autism world in which you and the rest of the fine people

> here

> live. Feel free to e-mail me privately if you need to talk to someone.

>

> Pam

Hi Pam it is nice to meet you. Do not sell your self short any child

under

the autism spectrum is a challenge for his/her family and friends. Before

when my child was considered pdd, yes I knew there was much worse cases

out

there but what I had was a really impossible child lol at the time anyway.

Also when you have to vent do it because as time goes by if you are like

me

and your child's autism worsens you will have to vent in order to stay

sane

lol. I for one will listen anytime you have to get something out.

Hopefully

you will be lucky and your child will get better instead of worse, but no

matter God gives you what you can handle. Sometime I am sure you to wish

that he didn't have so much confidence in you at times. Also, even with

me

dr.s folks have tried to intimidate me and make less of my child's autism

when I know it's difficutl at times because I live with her or rather

them.

A child with " just sensory intergration'' can be crazy making for any

family

so just because your child is not severely autistic it doesn't make you

any

less special or your child any less special.

Tammy

[Guest guest]

your child's autism worsens

Don't you mean that as your child ages, the gap widens? That is what

I see happening. The older she gets, the more I see how she is behind

her agemates. Or, in my daughter's case, once she was on meds for her

bipolar, the " other issues " (PDD and ADHD)were more evident.

Janelle

[Guest guest]

I'm not sure about the original question but if I'm assuming correctly that

you were wondering how to test for magnesium defficiency, a whole blood cell

element test is what our doc says is most accurate.

Gaylen

[Guest guest]

In a message dated 1/22/2003 6:40:24 AM Central Standard Time,

jcurious4now@... writes:

> Tammy I must of have missed your message.... not that I do a lot of

> responding..

> Most of the time everyone is asking for help on a level where I haven't

> been....

> But I'll throw open the front door...hang the welcome sign....and put on

> the

> coffee...

> Welcome...pull up a chair to the kitchen table... ; )

>

> I know it may seem that no one reads but you post... but I find that on

> allgroups I belong too... there are 95 % readers...and 5% posters : )

>

> Carie

>

>

Lol thanks you guys sorry for the vent lol. What I said or maybe I didn't

send the message after all was that I was in trouble with absences with

Angel. It seems the attendance office isn't getting my notes when she misses

grrrrrrrr. She has missed 16 days of school 2 weeks for pink eye 1 week for

chicken pox grr and then there were 4 booboos on my part which I couldn't

help. Angel loves to stay awake and get into things for like 22 hours a day

sometimes lol. so I can't get any rest either as I have to stay up and

supervise her. I put her to bed at 8 she normally goes all by herself

actually but then she gets up grrrrrrrrrr. Needless to say there were 2 days

in there were she missed school because she missed her bus because I crashed

and couldn't wake up. If I wake it's too late cause I can't drive and often

do not have a ride. Walking with Angel is not an option especially since it

is so far and this is a blind autistc kid with a cane lol. 'then 2 other

days I got really sick I was throwing up so it was impossible to get her out

the door for the bus then. Well, everything is okay now. I talked to the

attendance worker. I told her about the dr. visists and that all along

everysince my girls were babies I have had issues with sleeping and have

always taken them to a phyciatrist. angel used to be my escape artist she

snuck out one night and almost became part of the sidewalk when she climbed

ofthe the little constuction fence outside after they had just poured

concrete lol. as far as me getting sick like that they can do nothing, this

is what the attendance lady told me it's the same as Angel being sick really

and as far as the sleeping I have proof she see a dr and has been on sleeping

meds for it. as far as when she is sick I have taken her to the dr almost

everytime so the attendence worker took all this info down and said she was

sorry and wouldn't bother me again plus when she is sick I always write in

her communication notebook so I can cover my butt after all. I was just

scared when they sent me a note and threatened to file charges. I know she

needs school but somethings can't be helped at all.

I also want to share with you guys that I am very excited I will be moving s

oon. I do not like this complex bbecause it seems like every other month we

are out of a maintence man and the work around her never gets done. I had

problems with my sinks and dishwasher leaking for months and guess what? No

one knew that the water from the kitchen sink and dishwasher had leaked into

my kids it caused mold I found it by accident and I had to fight just to get

them to clean it even though I took the worst things I found put them in a

plastic bag then I took them and set them on the landlord's desk lol she

couldn't argue with me much but she tried. Now also druggies are moving in

one next door and then another one and then the last maintence man all were

on drugs and all ended up committing suicide her, so just ssi or not I am

moving to a more classy area, I may have to boot a room and bath room but

here I tried that but boy did I screw up. I am paying $600 for a 2 room 1

room bath with no w & d hook up and not play ground no amendities at all. So,

I am getting w & d hook ups a play ground maybe 3 rooms or 2 rooms and 2 bath

rooms but there will also be a patio with storage I also do not have that

here. I have lived here almost 2 years. I should have just broke my lease

due to default by owner but we got so many promises that I was patient and

stayed. I broke my last lease this way. They didn't charge me a dime and if

they do I have pictures of the raw sewage right outside our home grrrrrrrrrr.

I have never had to live in such poor conditions so I am happy to get out

. Plus here there are too many chemical plants and I have very severe

asthma so I am getting away from that mess too.

Tammy

[Guest guest]

In a message dated 1/22/2003 6:30:27 PM Central Standard Time,

pamelapotter@... writes:

> Thank you, Tammy! It is nice to meet you, too. When it is YOUR child, any

> disability is a huge deal! We are lucky with in that he is not a big

> behavior problem. Don't get me wrong, he definitely has his moments but

> most kids do. 's disabilities really lie in his speech delay (he'll

> be

> 4 the end of April and he tested at an average of 25 months on

> comprehension

> and communication, so he's about 1 1/2 years behind) and his social

> interaction. He's doing better at that but has started pushing at kids to

> get their attention since he doesn't really understand he should just say,

> " Let's play. " or something like that. I am working on that with him now.

> I

> know he isn't trying to bully the kids because he isn't doing it hard.

> He's

> never been aggressive until his desire to interact increased. I pray the

> autism doesn't get worse. I didn't realize until recently that was even a

> possibility.

>

> I appreciate your offer to lend an ear.

>

> Take care.

> Pam

>

Oh boy I can definitely relate with the speech delays my children are like

toddlers when it comes to their speech they are waaaaaaaaay behind but give

me some time to think and I will make a list of ways to help in this problem.

I even had the pushy issue with both of my kids. First of all, in your own

playing with him you can encourage him to use his words. If he approaches

you and want's to play so okay here is what you say, " Mommy do you want to

play or Mommy I want to play something like that. Encourage him to repeat if

he does great reward him with a coin, piece of candy, pokemon card, sticker

or something and also the play with him.

If he doesn't then tell him no. Say, " try to use your words if you want me

to play with you! " Knowing he is autistic I do not know if he is like Angel

in that is he echolaic or fixate on phrases if so you may have to guard

everything you say so that it doens't come out sounding inappropriate. Not

that you wouldn't know that if your child is like this lol. Maybe not at

first but I bet after a few tries or more he will at least try it. If he

tries reward him with playing with him even if it doesn't come out right you

have to encourge his trying. When he does it right reward him better. Even

if he doesn't understand then keep telling him that that's how you get

friends to play with you at school. I am glad he isn't so bad behavoral wise

though but yes still every bit as challenging. I know that in my shoes even

if my children were not as challenging just knowing they are different can be

a challenge in its self. Each time you take this child to a new dr or you

meet a new friend you tell his story then you never know what will happen

next will this person argue with me, be sympathetic or what ever that is a

small challenge that presents a little dose of stress that we take for

granted but folks with " normal " healthy children don't have this. So I

understand very well what you are going through.

Tammy

[Guest guest]

In a message dated 1/22/2003 6:57:56 PM Central Standard Time,

gryharhntr@... writes:

> Pam, it could get worse but it can also get better. If I knew back then

> what

> I know now, I don't think my son would have gotten worse. I say that

> because

> 9 out of 10 things I have tried, have made my son better. When he started

> on

> the spectrum, he was mild and when we went back to redo the testing, he was

>

> worse. He finally went into his own world and wouldn't have much to do

> w/us.

> Then we implemented the ever so expensive GFCF diet, and we got eye contact

>

> and he even wanted to spend time w/us:). Now we are getting appropriate

> speech about once a day. Two days ago he told my husband " go away " and

> pushed him out of the kitchen. He was in there spooning the pumpkin sauce

> (sp) into his mouth, a no no! Today he told the teacher and nurse " I want

> mommy " several times. When I got there he ran to me. I think it is the

> SuperNuThera that I just started using faithfully everyday. Before the

> secretin infusions I did not want to use it daily because of constipation

> and

> even waited a long time after the secretin. He seems to be ok w/it now. I

> also think the bovine colostrum has helped somewhat heal his gut.

> Actually,

> so many things have helped. I can't afford everything so there are things

> I

> have yet to try but I plan on doing it as soon as I can afford a local DAN!

>

> doc (my son's old doctors are so far away now that we moved from the East

> Coast to the West Coast).

I would love to try the diets and all but I know my kids they would starve

they are very big eater and not of junk. They love candy but they will

choose food first. My kids both got worse before they got better. Angel's

diagnosis is worse but she isn't self mutilating and stuff like she was. I

haven't spent a dime for stuff like diets, I use time out expectations,

creative idea, spankings for us it works. and as with anything in some cases

it may get worse or even impossible before it gets better but it will in the

end get better. If you think I am going to wipe my kids butts or feed them

all thier lives lol you are wrong yes they both have challenges in these

areas but trust me one day they are gonna want to do for themselves anyway.

Sometimes I lax when the world thinks i am wrong but I have to pick my

battles and I don't care if they have poop or food all over them they will do

thinks like wipe themselves, speak for themselves even if it's with signing

and feed themselves if those things are challenging for them now that's okay

I them make them clean after themselves they must clean for the rest of their

lives. Sorry to sound so gross lol I am exaggerating some of course but my

point is there are all kinds of ways to tackle these challenges. With some

of these children playdoh and shaving cream and other tactile things work

well but with others the diets with others old fashion spankings and

intimidation works better. As long as it's sealed with a hug and a kiss with

love for your child you just can't go wrong trying. Lol, can you tell I am a

bit redneck hehehe.

[Guest guest]

In a message dated 1/22/2003 6:59:36 PM Central Standard Time,

jbowman8@... writes:

> your child's autism worsens

>

>

> Don't you mean that as your child ages, the gap widens? That is what

> I see happening. The older she gets, the more I see how she is behind

> her agemates. Or, in my daughter's case, once she was on meds for her

> bipolar, the " other issues " (PDD and ADHD)were more evident.

> Janelle

>

yes it's the same difference I think

[Guest guest]

Welcome Tammy. You certainly sound like you've got your hands full and quite

a challenge. Have you tried melatonin with your daughter to help her sleep?

looked at possible allergies that could be keeping her awake? I know one mom

who said her daughter never slept through the night until they removed apples.

Have you tried one of the auditory training programs to help dampen Angel's

sensative hearing?

Gaylen

[Guest guest]

I'm a bit more at ease now. I thought the Autism could actually worsen.

That to me is a bit different than the gap widening. It seems to me that is

a failure to progress more than a regression in what the child can do.

Pam

Re: Re: Intro

In a message dated 1/22/2003 6:59:36 PM Central Standard Time,

jbowman8@... writes:

> your child's autism worsens

>

>

> Don't you mean that as your child ages, the gap widens? That is what

> I see happening. The older she gets, the more I see how she is behind

> her agemates. Or, in my daughter's case, once she was on meds for her

> bipolar, the " other issues " (PDD and ADHD)were more evident.

> Janelle

>

yes it's the same difference I think

[Guest guest]

We do a lot of " modeling " for . He will say, " Milk, please. " We will

say, " I want some milk, please. " . That sort of thing. is not one who

will normally repeat something immediately after you say it...not if it is

something you want him to say anyway! LOL! He used to have a lot of

echolalia when he was younger and just starting to talk a little. He used

to be able to repeat commercials word for word, etc. He would repeat, using

exact verbage, something he heard on t.v. weeks ago. Now that he is able

to talk more, he has improved greatly. There were only two incidents of him

repeating things during his speech & language evaluation and he didn't

repeat the whole things, just the final few words. That seemed to happen

when he didn't understand what the pathologist was saying to him. We've

been tried to teach him to say, " I don't know. " , instead of repeating what

is being said to him when he was doing this often, but now he doesn't seem

to do it enough for us to be able to get the point across in correcting him.

He certainly does like to play, especially with Daddy when he comes home

from work. He will usually tell Daddy what he wants to play. We will

continue to model for him. Thanks for the suggestion.

Pam

Re: Intro

In a message dated 1/22/2003 6:30:27 PM Central Standard Time,

pamelapotter@... writes:

> Thank you, Tammy! It is nice to meet you, too. When it is YOUR child,

any

> disability is a huge deal! We are lucky with in that he is not a

big

> behavior problem. Don't get me wrong, he definitely has his moments

but

> most kids do. 's disabilities really lie in his speech delay

(he'll

> be

> 4 the end of April and he tested at an average of 25 months on

> comprehension

> and communication, so he's about 1 1/2 years behind) and his social

> interaction. He's doing better at that but has started pushing at kids

to

> get their attention since he doesn't really understand he should just

say,

> " Let's play. " or something like that. I am working on that with him

now.

> I

> know he isn't trying to bully the kids because he isn't doing it hard.

> He's

> never been aggressive until his desire to interact increased. I pray

the

> autism doesn't get worse. I didn't realize until recently that was even

a

> possibility.

>

> I appreciate your offer to lend an ear.

>

> Take care.

> Pam

>

Oh boy I can definitely relate with the speech delays my children are like

toddlers when it comes to their speech they are waaaaaaaaay behind but

give

me some time to think and I will make a list of ways to help in this

problem.

I even had the pushy issue with both of my kids. First of all, in your

own

playing with him you can encourage him to use his words. If he approaches

you and want's to play so okay here is what you say, " Mommy do you want to

play or Mommy I want to play something like that. Encourage him to repeat

if

he does great reward him with a coin, piece of candy, pokemon card,

sticker

or something and also the play with him.

If he doesn't then tell him no. Say, " try to use your words if you want

me

to play with you! " Knowing he is autistic I do not know if he is like

Angel

in that is he echolaic or fixate on phrases if so you may have to guard

everything you say so that it doens't come out sounding inappropriate.

Not

that you wouldn't know that if your child is like this lol. Maybe not at

first but I bet after a few tries or more he will at least try it. If he

tries reward him with playing with him even if it doesn't come out right

you

have to encourge his trying. When he does it right reward him better.

Even

if he doesn't understand then keep telling him that that's how you get

friends to play with you at school. I am glad he isn't so bad behavoral

wise

though but yes still every bit as challenging. I know that in my shoes

even

if my children were not as challenging just knowing they are different can

be

a challenge in its self. Each time you take this child to a new dr or you

meet a new friend you tell his story then you never know what will happen

next will this person argue with me, be sympathetic or what ever that is a

small challenge that presents a little dose of stress that we take for

granted but folks with " normal " healthy children don't have this. So I

understand very well what you are going through.

Tammy

[Guest guest]

Hi CJ,

I do not currently live in TX but I do learn a lot from this e-group (and

some others). There is so much to learn but I just don't seem to have the

time or resources. I have a 6 yr old ASD son and a 4 yr old daughter and a

husband who is at the beginning stages of M.S.

Welcome and I know I feel fortunate to be allowed to remain a member.

Hope

> Subj: Intro

> Date: 1/23/03 1:06:15 PM Eastern Standard Time

> From: <A HREF= " mailto:christal@... " >christal@...</A>

> Reply-to: <A

HREF= " mailto:Texas-Autism-Advocacy " >Texas-Autism-Advocacy@yahoog\

roups.com</A>

> To: <A

HREF= " mailto:Texas-Autism-Advocacy " >Texas-Autism-Advocacy@yahoog\

roups.com</A>

> Sent from the Internet

>

>

>

> New member wanting explain why I am here. Evan will be 9 in March

> and my nephew is 15. Evan has ADHD, Complex Partial

> Seizure Disorder and PDD NOS. has high functioning

> autism. Thank you for the chance to learn more about these issues.

> Cj

>

> Unlocking Autism

> www.UnlockingAutism.org

>

> Autism-Awareness-Action

>

>

[Guest guest]

In my son's case it was both, he got older and also got worse. He was like a

vegetable (at least to me). I fed, bathed and clothed him but he was not

w/me. After the GFCF Diet we took him back to the developemental specialist

who retested him (she had tested him 3 months earlier) and she was amazed

that yes he had aged 3 months but he was holding. Prior to that the 3 other

tests, showed he was not holding but was getting worse. He is being tested

right now but to me he is no longer holding but advancing. He understands

simple commands. He tries to dress himself, backwards mind you:) At times

I actually have hope that he can come out of his world permanently. It may

take chelation, I don't know.

> Subj: Re: Re: Intro

> Date: 1/23/03 3:22:11 AM Eastern Standard Time

> From: <A HREF= " mailto:smiles2322@... " >smiles2322@...</A>

> Reply-to: <A

HREF= " mailto:Texas-Autism-Advocacy " >Texas-Autism-Advocacy@yahoog\

roups.com</A>

> To: <A

HREF= " mailto:Texas-Autism-Advocacy " >Texas-Autism-Advocacy@yahoog\

roups.com</A>

> Sent from the Internet

>

>

>

> In a message dated 1/22/2003 6:59:36 PM Central Standard Time,

> jbowman8@... writes:

>

> >your child's autism worsens

> >

> >

> >Don't you mean that as your child ages, the gap widens? That is what

> >I see happening. The older she gets, the more I see how she is behind

> >her agemates. Or, in my daughter's case, once she was on meds for her

> >bipolar, the " other issues " (PDD and ADHD)were more evident.

> >Janelle

> >

>

> yes it's the same difference I think

>

>

>

[Guest guest]

Thanks Gaylen. Do you know aprox how much this test runs?

Hope

> Subj: Re: Intro

> Date: 1/23/03 1:27:36 AM Eastern Standard Time

> From: <A HREF= " mailto:Googahly@... " >Googahly@...</A>

> Reply-to: <A

HREF= " mailto:Texas-Autism-Advocacy " >Texas-Autism-Advocacy@yahoog\

roups.com</A>

> To: <A

HREF= " mailto:Texas-Autism-Advocacy " >Texas-Autism-Advocacy@yahoog\

roups.com</A>

> Sent from the Internet

>

> I'm not sure about the original question but if I'm assuming correctly that

>

> you were wondering how to test for magnesium defficiency, a whole blood

> cell

> element test is what our doc says is most accurate.

> Gaylen

>

>

>

[Guest guest]

In a message dated 1/23/03 3:28:45 PM Central Standard Time,

gryharhntr@... writes:

> Thanks Gaylen. Do you know aprox how much this test runs?

>

Since our insurance paid fully for it the last time we did it, I really don't

recall. I don't think it's very pricey though.

Gaylen

[Guest guest]

In a message dated 1/23/2003 6:58:25 AM Central Standard Time,

pamelapotter@... writes:

>

>

> I'm a bit more at ease now. I thought the Autism could actually worsen.

> That to me is a bit different than the gap widening. It seems to me that

> is

> a failure to progress more than a regression in what the child can do.

>

> Pam

My child did regress

Tammy

[Guest guest]

In a message dated 1/23/2003 7:08:14 AM Central Standard Time,

pamelapotter@... writes:

> We do a lot of " modeling " for . He will say, " Milk, please. " We will

> say, " I want some milk, please. " . That sort of thing. is not one

> who

> will normally repeat something immediately after you say it...not if it is

> something you want him to say anyway! LOL! He used to have a lot of

> echolalia when he was younger and just starting to talk a little. He used

> to be able to repeat commercials word for word, etc. He would repeat,

> using

> exact verbage, something he heard on t.v. weeks ago. Now that he is able

> to talk more, he has improved greatly. There were only two incidents of

> him

> repeating things during his speech & language evaluation and he didn't

> repeat the whole things, just the final few words. That seemed to happen

> when he didn't understand what the pathologist was saying to him. We've

> been tried to teach him to say, " I don't know. " , instead of repeating what

> is being said to him when he was doing this often, but now he doesn't seem

> to do it enough for us to be able to get the point across in correcting

> him.

> He certainly does like to play, especially with Daddy when he comes home

> from work. He will usually tell Daddy what he wants to play. We will

> continue to model for him. Thanks for the suggestion.

>

> Pam

boy that sounds so very much like Angel it's taken alot of time to get her to

talk. with her she talked at 3 months she also played with toys at 3 months.

Then she lost it all. At 14 months she started slapping herself and doing

all sorts of weird things lol. At age 3 she sang the entire alphatbet song

then lost that to. She didn't speak at all after that until she was 4. It

was entirely echolaic at that time. She has just begun to talk

appropriately. Last year I taught her to say you hurt my feelings instead of

throwing a fit when someone hurt her. Well, I was keeping other children in

my home not from a good back ground and the little girl introduced the term,

" wee, wee " lol in the bathroom it was very innocent for you folks who want

to see something not there though the girl had been hurt before I met her.

Angel heard her say, " wee,wee " and thus she lost feelings and replaced it

with weewee. This was so aweful. My husband and I were in the grocery store

one day and Angel wanted a baby doll, well my husband said, " Angel, this is a

grocery store there are no baby dolls here. " So Angel went bullistic and

screamed out, " Daddy hurt my wee wee! " She was meaning feelings.

Grrrrrrrrr, folks all over the store were staring at us. One person even

followed us home and called cps. This is one reason my husband and I are

seperated. He did nothing wrong that just made us really uncomfortable. CPS

and the police both closed the case after hearing the entire story and

talking to her school, friends, neighbors and relatives but that could have

been much worse. She still will come out with stuff that sounds terrible and

incriminating but it means something else really. Sometimes it is touch to

figure out what she means but it almost never turns out to be bad, lol. The

funny thing was when she said that in the store she was just mad screamed it

out and then smiled so big lol. We could have just smushed her lol, we were

so shocked.

[Guest guest]

In a message dated 1/23/2003 10:22:18 AM Central Standard Time,

Googahly@... writes:

>

>

> Welcome Tammy. You certainly sound like you've got your hands full and

> quite

> a challenge. Have you tried melatonin with your daughter to help her

> sleep?

> looked at possible allergies that could be keeping her awake? I know one

> mom

> who said her daughter never slept through the night until they removed

> apples.

>

> Have you tried one of the auditory training programs to help dampen Angel's

>

> sensative hearing?

> Gaylen

>

we do use melatonin with the drs blessing even, it was working for a while

but not now. I do not know what auditory training is can you explain please?

[Guest guest]

In a message dated 1/23/2003 3:11:24 PM Central Standard Time,

gryharhntr@... writes:

> In my son's case it was both, he got older and also got worse. He was like

> a

> vegetable (at least to me). I fed, bathed and clothed him but he was not

> w/me. After the GFCF Diet we took him back to the developemental

> specialist

> who retested him (she had tested him 3 months earlier) and she was amazed

> that yes he had aged 3 months but he was holding. Prior to that the 3

> other

> tests, showed he was not holding but was getting worse. He is being tested

>

> right now but to me he is no longer holding but advancing. He understands

> simple commands. He tries to dress himself, backwards mind you:) At

> times

> I actually have hope that he can come out of his world permanently. It may

>

> take chelation, I don't know.

Yep Angel regressed and I say she was just a blob lol. I had to do

everything for her as well. She has gotten better with my boot in her butt

sometimes lol but she still is worse in other ways. She seems to be getting

deeper and deeper involved with her stims and ocd's. I am on a very very

fixed income ssi and a littlc child support is all my the income with have so

changing her diet is too much for me to be able to do. I have to find other

ways to solve her problems.

Tammy

[Guest guest]

The neurologist wants to do a 48 hour EEG - has anyone done this? Seems so inconvenient to be in the hospital for two days for this test.

Hi

We did all those tests last summer with my son. Luckily the Fragile X test came back negative.

We only did a 24 hour EEG, but they let us take it home. His head was all wrapped up -- it took about 45 minutes to an hour to prep him at the EEG office. He had to carry the unit around with him for 24 hours. It had a battery back up in case we needed to move him. But honestly, by the end of the 24 hours, he couldn't wait to get the things out of his hair and off his head. The bandages that were covering his head were almost all the way off from sleeping.

He was almost 13 at the time. Maybe since your son is younger they want to keep him in the hospital.

Good luck!

Kathy in Suburban Chicago

[Guest guest]

Sorry this welcome is late, but welcome to the group !!

We have been thru the video EEG with my 11yr old son. He was in the hospital for a few days with that. Maybe that is what they will be doing with your son.

MISSYSAHM to some special kids!!!

Excuse Me While I Go Raise Tomorrow's Future.

Intro

I just wanted to say HI and introduce myself. I'm , I live in NY (Long Island) and have two boys, <7> and ph <4>.

was just diagnosed ADHD in October. ph just saw the neurologist this morning and she says she suspects autism. I expected Aspergers, so I'm not SO surprised, but I was more hoping for ADHD, so it is a blow to us.

I am overwhelmed, to say the least, with all the info out there. We did the blood test this morning for Fragile X, should get the results by next week. The neurologist wants to do a 48 hour EEG - has anyone done this? Seems so inconvenient to be in the hospital for two days for this test. I understand the reasoning though. The only seizure he ever had was a febrile seizure at about 6-8 months old.

I appreciate getting to know you ladies and receiving more info. I see there are other moms on this list with more than one special needs child.

Alas - I must run and break up yet another sibling fight

- Ticali Honor Society, Certified Beauty Advisor, Fundraising Specialist To Buy or Sell Avon Call or visit www.BuyAvon.com

Wife to - 7/8/95 Mom to Vinny (4/3/96) and ph (6/15/99)