Re: Hello Out There!

May 31, 2002

Welcome to the group . I'm G, we live right outside Philly PA.

My daughter got the autism diagnois in November. She's not quite three yet.

I'm sorry about your son. Alot of the gals on this list have had trouble

getting a diagnois or at least had to wait. We're right on the border I

think between autism and pdd but this is after a year of therapy and in home

stuff. I won't know until September which is how long we have to wait for

our " follow up " appointment. We only had 2 hours with a teacher, 2 with an

OT and 2 with a speech therapist. When we started we only saw a speech

therapist once a month. (Does your son have an IEP in place?)

There are a few others from CA so wait patiently I'm sure you'll hear from

them

I think that's great you son is mainstreamed and I wish you the best. Did

you get a second opinion after the EKG? I always find another perspective

helps. My daughter did alot of the " spacing out " because she had sensory

issues. After they were worked out with occupational therapy she doesn't do

that to the same degree. We also started seeing a DAN (Defeat Autism Now)

doctor and have had ALOT of success with Cod Liver Oil which we use to

" stabilize the nerve endings. " Before we started this did alot of

rubbing her hands... it was like she wasn't sure they were connected to her

if that makes sense.

Hope to hear more from you

G

June 1, 2002

Hi , welcome on the list. My son , he is 8, does not

believe in hurting himself. But he does hurt me at times.

There are very nice people here on the list. You will have a good

time.

n from Germany

June 1, 2002

Thank you, n! I am already having a good time!

My son used to hit and kick me allot. He hasn't done it for a few

months now, so hopefully the trend will continue! He still pushes

other kids or pokes them in the eye every once in a while, though.

I guess we can't expect everything to " go away " , but hopefully age

and maturity will help. ( %

> Hi , welcome on the list. My son , he is 8, does not

> believe in hurting himself. But he does hurt me at times.

> There are very nice people here on the list. You will have a good

> time.

>

> n from Germany

June 1, 2002

First of all I slip the cod liver oil in her juice. Orange or cranberry

seems to work the best. It took awhile but was much easier than holding her

down and sitting on her while I forced the spoon down her throat

When your child is under 3 you automatically get evaluated for services.

Then you have to get the diagnose in order to get Medicaid which will pay for

more services. Of course you need a diagnose for that and can only get that

by waiting 6 month since the only doctor that does that only works three days

a week and only sees new patients on Mondays.

I know what you mean about slipping once got pine sap on her hands and

she just went. I was hysterical. Since the OT has worked with her she has

only done that once and we still aren't sure if it was a problem or she was

just cold and shivering. I was hysterical however so I know what you mean.

I would try to get a second opinion.

For the OT stuff you have to start small and move your way up. Any of us can

tell you what we do with our own kids and you can try and see what works.

Everything is hit or miss. If you can tell he doesn't like something stop.

We have a box filled with rice that she plays in. We have lots of playdough

and mushy stuff. I let her play with yogurt and mashed potatoes unlike those

good parents We do a lot of hand over hand with thick crayons.

Gotta go she's crying G

June 1, 2002

First of all I slip the cod liver oil in her juice. Orange or cranberry

seems to work the best. It took awhile but was much easier than holding her

down and sitting on her while I forced the spoon down her throat

When your child is under 3 you automatically get evaluated for services.

Then you have to get the diagnose in order to get Medicaid which will pay for

more services. Of course you need a diagnose for that and can only get that

by waiting 6 month since the only doctor that does that only works three days

a week and only sees new patients on Mondays.

I know what you mean about slipping once got pine sap on her hands and

she just went. I was hysterical. Since the OT has worked with her she has

only done that once and we still aren't sure if it was a problem or she was

just cold and shivering. I was hysterical however so I know what you mean.

I would try to get a second opinion.

For the OT stuff you have to start small and move your way up. Any of us can

tell you what we do with our own kids and you can try and see what works.

Everything is hit or miss. If you can tell he doesn't like something stop.

We have a box filled with rice that she plays in. We have lots of playdough

and mushy stuff. I let her play with yogurt and mashed potatoes unlike those

good parents We do a lot of hand over hand with thick crayons.

Gotta go she's crying G

June 1, 2002

Hi ,

Welcome to the group. My , 7, was diagnosed ASD last year. He went

through a period of smacking himself in the head, but he seems to be over that,

thank goodness.

Glad you decided to join us. I think you'll like it here.

Tuna (aka Louise)

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June 1, 2002

Thank you, !

I was in Philly for three months way back in the summer of 1988. I

was there visiting with the boyfriend I had at the time. He was in

Med school. It is a beautiful and exciting city and I met some of

the nicest people there!

It is frustrating how long and how many hoops we have to jump

through to get a diagnosis. In fact, still has another -

seperate - " Communication Disorder " diagnosis pending.

also was just over the " Asperger's/PDD " line, according the

Psychiatrist's evaluation. (Did I mention he also was seen by a

psychiatrist? It was after the psycologist couldn't offer us

anything more.) The Regional Center and School District also placed

him just above the PDD line.

is on his fourth IEP this year. We'll have to see if we

beat this record next year when he's in 1st grade! I do wonder

if/how long he will be able to stay mainstreamed. After 2nd grade,

classroom size in our School District increases to a maximum of 36

kids per class. Right now, I can't even imagine him being able to

function with that many people in one room! In fact, we had to

rearrange my husband's sleep schedule in February (he works

graveyard) because the enrollment in 's day care (it's on the

school grounds and is only 1 room) increased to 36 kids. His

agressive behavior picked right back up where he left off. Pushing,

shouting at the other kids, poking kids in the eye, the whole bag of

horrors. We had to pull him out of the after school session

entirely. Now he only attends daycare 2 to 3 mornings a week, when

the enrollment is still around 10 to 12 kids.

I guess all we can do is take one minute at a time.

We have not gotten a second opinion for the EEG. Hadn't thought of

that. We probably need to explore this option and we are still

exploring occupational therapy for him. How did you know, or who

let you know, what type of therapy was needed? The school district

has not seen a need yet, though, the Regional Center has discussed

the possibility. We are so focused on the social behavior now, but

I am concerned about his sensory reactions and very concerned about

how he writes letters and numbers. It is downright strange - and it

takes him twice as long as anyone else to write becuase he cannot

follow the " logical " flow of letters and numbers.

He also does the thing with his hands and fingers, though not as

frequently now. (Usually when a stranger approaches and tries to

speak to him.) I know what you mean about the " connection " of the

hands. It is as if they are another object, not a part of the

body. I look back at some of 's pictures from his first 3

years and wonder how I didn't notice the strange " Positionaing " of

his fingers and hands.

How do you get your daughter to take cod liver oil? Is it a pill?

If so, how large is it? has a very strong gag reflex and he

throws up quite frequently.

The seizures has had are a little more than " spacing out " ,

and are not the same as the typical unreasponsiveness that occurs

with autism. (He still does this.) He has urinated on himself

during most of them. Once he tried to climb the wall in our family

room (this one was the most recent), and sometimes he will just

freeze in whatever position he is in for two to five minutes (he's

done this twice in class, pencil or crayon in hand, eyes focused at

his paper, and urinated). He has also had short grand-mal type

seizures when asleep - body vibrates off and on for periods up to an

hour. After each of the " awake " seizures, he is exhausted, falls

asleep, and sleeps for a few hours. I have a sister who also has a

seizure disorder, and her earliest seizures were similar to

's. Since he has been at full dose with the Lamictal, he has

not had a seizure, though, he contiues to have periods of

unresponsiveness every day.

The first time he had one I became very distraught and cried for an

hour after he fell asleep. I was afraid he was slipping away from

us and might never rejoin the world. This was before I suspected it

was a seizure.

I hope you get through the maze of doctors and tests and all of the

stuff that is involved with getting a diagnosis without losing too

much of your sanity! I still am trying to figure out how much I

have left. ( %

Thanks again for the info and support - I would say " you don't know

how much it means to me " - except, I am sure that you do.

> Welcome to the group . I'm G, we live right outside

Philly PA.

> My daughter got the autism diagnois in November. She's not quite

three yet.

>

> I'm sorry about your son. Alot of the gals on this list have had

trouble

> getting a diagnois or at least had to wait. We're right on the

border I

> think between autism and pdd but this is after a year of therapy

and in home

> stuff. I won't know until September which is how long we have to

wait for

> our " follow up " appointment. We only had 2 hours with a teacher,

2 with an

> OT and 2 with a speech therapist. When we started we only saw a

speech

> therapist once a month. (Does your son have an IEP in place?)

>

> There are a few others from CA so wait patiently I'm sure you'll

hear from

> them

> I think that's great you son is mainstreamed and I wish you the

best. Did

> you get a second opinion after the EKG? I always find another

perspective

> helps. My daughter did alot of the " spacing out " because she had

sensory

> issues. After they were worked out with occupational therapy she

doesn't do

> that to the same degree. We also started seeing a DAN (Defeat

Autism Now)

> doctor and have had ALOT of success with Cod Liver Oil which we

use to

> " stabilize the nerve endings. " Before we started this did

alot of

> rubbing her hands... it was like she wasn't sure they were

connected to her

> if that makes sense.

>

> Hope to hear more from you

> G

>

June 1, 2002

Thank you! I already do!

I'm glad to hear the head banging can/does stop. It scares the

bejeebers out of my when he does it.

> Hi ,

>

> Welcome to the group. My , 7, was diagnosed ASD last year.

He went through a period of smacking himself in the head, but he

seems to be over that, thank goodness.

>

> Glad you decided to join us. I think you'll like it here.

>

> Tuna (aka Louise)

>

> ****************************************************Get more from

the Web. FREE MSN Explorer download : http://explorer.msn.com

>

June 1, 2002

Thank you! I already do!

I'm glad to hear the head banging can/does stop. It scares the

bejeebers out of my when he does it.

> Hi ,

>

> Welcome to the group. My , 7, was diagnosed ASD last year.

He went through a period of smacking himself in the head, but he

seems to be over that, thank goodness.

>

> Glad you decided to join us. I think you'll like it here.

>

> Tuna (aka Louise)

>

> ****************************************************Get more from

the Web. FREE MSN Explorer download : http://explorer.msn.com

>

June 1, 2002

Thanks, !

> First of all I slip the cod liver oil in her juice. Orange or

cranberry

> seems to work the best. It took awhile but was much easier than

holding her

> down and sitting on her while I forced the spoon down her throat

>

> When your child is under 3 you automatically get evaluated for

services.

> Then you have to get the diagnose in order to get Medicaid which

will pay for

> more services. Of course you need a diagnose for that and can

only get that

> by waiting 6 month since the only doctor that does that only works

three days

> a week and only sees new patients on Mondays.

>

> I know what you mean about slipping once got pine sap on her

hands and

> she just went. I was hysterical. Since the OT has worked with

her she has

> only done that once and we still aren't sure if it was a problem

or she was

> just cold and shivering. I was hysterical however so I know what

you mean.

>

> I would try to get a second opinion.

>

> For the OT stuff you have to start small and move your way up.

Any of us can

> tell you what we do with our own kids and you can try and see what

works.

> Everything is hit or miss. If you can tell he doesn't like

something stop.

>

> We have a box filled with rice that she plays in. We have lots of

playdough

> and mushy stuff. I let her play with yogurt and mashed potatoes

unlike those

> good parents We do a lot of hand over hand with thick

crayons.

>

> Gotta go she's crying G

>

June 1, 2002

Welcome !

Well, I don't know if I can give you any advice as to how to ride out the

storm, other than hang on tight!

sounds just like Jacqui (except for the sleep and seizures)....

Jacqui turned 7 in February...is in full-inclusion first grade, receives OT

and Speech..is supposedly in a " friendship group " (from which I can tell is

really nothing more than her spending 1:1 time with another girl). We give

her digestive enzymes (although we've fallen off that wagon quite a

bit...it's impossible to get them into the foods that she is eating

now)...and she is on a nitely dose of TMG.

Anyhow, welcome again...

Glad to have another listmate!

Penny :-D

June 2, 2002

Thank you, Penny! I'm glad and lucky to have found this group!

I've spent the last year and a half alone (as far as my social

groups go) in this issue. Now that I'm here . . . I know I'm not

alone in this!

> Welcome !

>

> Well, I don't know if I can give you any advice as to how to ride

out the

> storm, other than hang on tight!

>

> sounds just like Jacqui (except for the sleep and

seizures)....

> Jacqui turned 7 in February...is in full-inclusion first grade,

receives OT

> and Speech..is supposedly in a " friendship group " (from which I

can tell is

> really nothing more than her spending 1:1 time with another

girl). We give

> her digestive enzymes (although we've fallen off that wagon quite a

> bit...it's impossible to get them into the foods that she is eating

> now)...and she is on a nitely dose of TMG.

>

> Anyhow, welcome again...

>

> Glad to have another listmate!

>

> Penny :-D

June 2, 2002

--renee,

Your son sounds very much like a combination of my two sons. My

pddnos one is , who is almost 8, his speech is very similar and

has a lot of mood swhings. He was recently tested for seizures, but,

he was clear. I have a younger son, with petit mal (was having over

100 seizures daily). He is on depakote, which is helping, however,

there are some aftereffects of seizures, I believe. He has been

assessed many times with the cars, due to some autistic traits, but,

usually scores borderline ( 26 or 27). Id like to hear more about

your son.

Thea

- In parenting_autism@y..., " nayteer " <nayteer@e...> wrote:

> My name is . I am new to the group and this is my first

> opportunity to read posted messages and write one of my own. I and

> my husband, Tony, work full time.

>

> After reading your mesasges, I have to say that I can sooo relate

to

> many of your experiences, and I am so in awe of all of you!

>

> My son, , is 7.4 years old and was diagnosed with high

> functioning autism a year ago (January 2001). He was also

diagnosed

> with a seizure disorder in January 2002. So far, he only has

> had " petit-mal - space out " type of seizures lasting up to five

> minutes. In hind sight, we have recognised that he began showing

> symptoms of autism at six weeks of age (refused to be held close or

> cuddled and refused breast feeding after 6 weeks, never slept more

> than an hour at a time until he was 14 months, never sleeps more

> than three hours without waking now, fascination with spinning

> objects from three months on, rarely coo'ed or babbled his entire

> first year, spoke " jibber-ish " until he was four).

>

> is currently enrolled in a mainstream Kindergarten class,

> and is in his second year of speech therapy. He has also recently

> started treatment in (small) group " social " therapy.

>

> He/we are receiving services from our local Regional Center

> (California's service provider for developmentally disabled

> persons), and he sees a Neurologist every two months. had

> an MMR last year (that was FUN! Thanks to the double dose of

> sedative it took to get the darn thing done, I now know what a

> drunken 6 yr old acts like!) which showed no mental retardation,

and

> an EEG in January that was " grossly abnormal " and confirmed the

> seizure diagnosis. We have tried Paxil - it gave him severe

> headaches and we saw no improvement - so we discontiued it. He is

> currently taking " Lamictal " for his seizures and - supposedly - as

> a " mood " enhancer. It has controlled his seizures, however,

> his " mood " has actually gotten worse since he has been on the full

> dose.

>

> is very good with language, considering he has autism.

> Initially, about 99% of his speech consisted of

words/sounds/phrases

> he overheard from other people or on TV. The past six months, he

> has improved in his speech and now about 40% is his original

> thought. Emotionally he is like a three year old about 50% of the

> time and a five year old the rest of the time. He was potty

trained

> at almost 5 and is still incontinent when he sleeps. He has never

> been much of a sleeper and he still frequently wakes during the

> night. He displays severe behavior when he is stressed, ANYthing

> changes, when he gets sick, when things aren't exactly to HIS

> specifications, when he is startled by an unexpected sight or

noise,

> or is acknowledged or approached by anyone he does not know VERY

> WELL. (By severe, I mean flapping, spinning, crying, rocking,

> screaming, hitting himself in the head, hiding, and so on.)

>

> He only began the " self-injurous " behavior a year ago. Is this

> common? Has anyone else experienced a progression in " undesirable

> behaviors " at this stage? Could the seizures have caused this to

> surface?

>

> This past week, he has been driving me up the wall! It seems

> anything I say ( " Would you like cereal for breakfast? " , " You can

> wear your yellow Spider-man shirt today. " , etc.) sets him off and I

> get an autistic version of his " two cents " , followed by him crying

> and lamenting on whatever I said that bothered him for up to an

> hour. He also (and this has been ongoing for the past 6

> months) " qualifies " everything he says by asking me, " Right Mom? " .

> (Good grief!!!)

>

> I would love to hear from anyone who is having or has had similar

> experiences with their child - and anything you have tried, or have

> heard of, that has helped.

>

> Thanks for your support.

>

June 2, 2002

Hi :

Interesting that was dx'ed so late, but my oldest was dx'ed with

Asperger Syndrome when he was fourteen so I can easily see how that could

happen.

After you know, you wonder how you could have been so blind. I always knew

Enrique was odd, but never knew what AS was like.

As for Putter, my six year old with autism, any fool could have dx'ed him in

their sleep after reading a brief definition of autism. But he is a bright

boy and doing pretty well.

Nice to have you among us!

Salli

June 2, 2002

Thank you, Salli.

You know. I can look back now and see so many symptoms: lack of

eye contact, poor motor skills, used non-verbal communication,

rarely spoke, the " Flapping " when he got upset or was really happy,

fascination with spinning objects, strange finger positioning and

and body posturing, his " lining " things up, etc. I realize now that

the problems that I was dealing with throughout his toddler years

and into his preschool years distracted me to the point that I did

not recognize that he was developmentally delayed.

One of my sisters had a mental breakdown, and her three children (5

year old twins - boy & girl - and a 16 year old girl)moved in with

us when was 2-1/2. They lived with us until he was 3-1/2.

We moved to a new house after my neices and nephew went back into my

sister's care, and we thought that all of the " changes " were

causing his strange behavior. My parents took care of until

he started preschool (at 4-1/2) and he is an only child, so we had

nothing to compare his behavior to. At first, the preschool

teachers and director thought he was deaf - that was until they saw

him speak to my Father, Dad, and me. Even then we didn't put two

and two together! Two months after he started preschool, both of my

parents were diagnosed with terminal cancer. (We got their

diagnosis/ prognosis 3 days apart.) My father died a month later.

My mother moved in with us 4 months after my dad died and she passed

away a year ago February (2001). We had just begun to suspect

's autism when her cancer resurfaced (she was in remission

for 4 months)in December 2001.

I finally have forgiven myself for not seeing his problems sooner.

I know we can't go back and recapture the past 4 years, so I just

have to look forward and do the best I can to make up for lost time.

June 2, 2002

Hi, Thea.

I would be most happy to share anything you would like to know.

Anything specific or do you want an over-all history?

June 3, 2002

Absolutley true!!!

>>>>>>

I finally have forgiven myself for not seeing his problems sooner.

I know we can't go back and recapture the past 4 years, so I just

have to look forward and do the best I can to make up for lost time.

<<<<<<

June 3, 2002

Absolutley true!!!

>>>>>>

I finally have forgiven myself for not seeing his problems sooner.

I know we can't go back and recapture the past 4 years, so I just

have to look forward and do the best I can to make up for lost time.

<<<<<<

June 3, 2002

--,

I was curious about the language thing. My son will be eight this

month, and it sounds like our kids have similar language. My son has

a lot of more functional type pharses, and their is some more

original type language, but, it is seldom. He has also been a big

babbler, and it has slowed down recently. Now, he will say stuff,

but, he seems to exaggerate his words, talk in a high pitched voice,

or try to imitate the accents of my in-laws. He sometimes comes up

with strange things like " red dog is sleeping " or " purple glitter at

night " Other strange stuff that he makes up. He is now on

supplements, and they seem to be helping his sleep and his immune

system-allergies.

I have a younger son with seizures, and language delay (except he

seems to be bilingual or even trilingual). I think that since the

seizures are controlled, he is talking a lot more. I thought my older

son, the one who is pdd, might have seizures, but and eeg ruled it

out, at least so far.

Thea

- In parenting_autism@y..., " nayteer " <nayteer@e...> wrote:

> Hi, Thea.

>

> I would be most happy to share anything you would like to know.

> Anything specific or do you want an over-all history?

>

> <nayteer@e...>

June 3, 2002

,

My name is Jacquie H. I am married to Jeff and we have 2 boys and

1 baby on the way. GReggory is 6 yrs and HF autistic. He is

finishing up his first yr of kindergarten and willl be entering 1st

grade this fall. Regular classes with part time speech and no other

outside help so far. Alec is 4.5 yrs moderate autistic with BP and

ADHD. He is finishing up his autistic preschool this yr and will

reenter this same class next fall for another yr. We are also in

California. Waterford, a small town east of modesto. Where are you at

in Ca?

Jacquie H