Re: long story - talking to someone about Autism

[Guest guest]

> Message: 7

> Date: Sat, 4 Jan 2003 09:41:34 -0500

>

> Subject: RE: long story - talking to someone about Autism

>

> But I would not be able to sit back and not say anything, either, on the off

> chance that you just might be able to help. I can't see how you're going to

> do any further harm, so I personally would send it and be prepared for an

> angry response.

>

> Good luck. Please let us know what happens.

I already sent that letter - almost two months ago. I have not heard

from her directly, only from a mutual friend who told me she was

extremely mad at me and " Who did I think I was " suggesting that her son

might be Autistic simply because my son was.

So I guess I was just wondering " Who did I think I was " sending it and

wondering if I was wrong in doing so.

I really want for their to be answers for this kid being the way he is

and I want for there to be help for him.....

<<sigh>>

~ Karin

[Guest guest]

That is another thought that crossed my mind as well. All the chaos in my house

this morning I hosed up two of my posts because I lost my train of thought.

Georga Hackworth

www.ubah.com/F1549 Enter to win $50 in FREE books!

Re: long story - talking to someone about Autism

Now the problem is weather or not your SIL cares enough to get something

done. It sounds like she has become somewhat self centered and is trying to

ignore what is going on because she doesn't want to deal with it.

Or, what strikes me as more likely, so hideously depressed that she is

totally immobilized.

Salli

[Guest guest]

That is another thought that crossed my mind as well. All the chaos in my house

this morning I hosed up two of my posts because I lost my train of thought.

Georga Hackworth

www.ubah.com/F1549 Enter to win $50 in FREE books!

Re: long story - talking to someone about Autism

Now the problem is weather or not your SIL cares enough to get something

done. It sounds like she has become somewhat self centered and is trying to

ignore what is going on because she doesn't want to deal with it.

Or, what strikes me as more likely, so hideously depressed that she is

totally immobilized.

Salli

[Guest guest]

That is another thought that crossed my mind as well. All the chaos in my house

this morning I hosed up two of my posts because I lost my train of thought.

Georga Hackworth

www.ubah.com/F1549 Enter to win $50 in FREE books!

Re: long story - talking to someone about Autism

Now the problem is weather or not your SIL cares enough to get something

done. It sounds like she has become somewhat self centered and is trying to

ignore what is going on because she doesn't want to deal with it.

Or, what strikes me as more likely, so hideously depressed that she is

totally immobilized.

Salli

[Guest guest]

> Message: 15

> Date: Sat, 04 Jan 2003 10:15:35 -0500

>

> Subject: Re: long story - talking to someone about Autism

>

> Karin ~

> What a mess! That is the first thing that comes to mind.

> I read all this and your letter, and here is my take on everything.

> 1. There was definatly bad parenting (not to mention bad homeschooling) going

on there. Because of that she may not care about her younger child and just

hope that she can get through it all and look forward to the day he moves out.

Especially after everything that happened with her oldest.

Definitely bad homeschooling. She just didn't want to homeschool those

kids. At one point she looked into putting them back in school but they

were at least a couple of years behind in grade at that point. They

would do things like hold off on ordering the textbooks and stuff

because they didn't have the money. So the kids would start their

school year late which wouldn't have been too much of a problem but then

she would let them quit when other kids were quitting in the summer and

then they wouldn't get done with the year. It turned out that if she

wanted to get them back into school, she would have had to pay to have

them tested to see what grade level they were in and that was out

because of the money it was going to cost them.

The sad thing is that I do believe she does care, but she has had so

many of her own issues that were not being dealt with that she just

couldn't do anything better than this. Looking back on it all I can see

it so clearly now that I couldn't see then. My SIL seriously needed to

be on medication but she wasn't. She may be manic-depressive I suspect.

I don't know if she is waiting for the youngest to move out, but I do

not see that happening. I can not see how he is ever going to be

self-sufficient.

> 2. I don't think that getting into porn on the internet would cause him to

molest a 4 year old unless he found child porn and thought that was " normal "

for whatever reason. Still, you would think that he would just " know " that it

was wrong. As you said, he should be attracted to girls his own age. This boy

is definatly screaming for help and you seem to be the only person listening.

Exactly. From everything I've read (and I've researched adolescent sex

offenders), the huge majority of sex offenders who start prior to their

teen years do it because it was done to them, not because they've been

looking at Playboy.

> 3. You did the right thing, don't beat yourself up over it. There is

definatly something wrong with your nephew, if it is ASD of some sort or not.

He needs help. Now the problem is weather or not your SIL cares enough to get

something done. It sounds like she has become somewhat self centered and is

trying to ignore what is going on because she doesn't want to deal with it. You

can lead a horse to water but you can't make them drink.

>

> I really hate to suggest this but if you are really concerned and you don't

think that she is doing anything you can make a phone call to child protective

services and get them involved (in fact, from what I know, I am surprised that

they didn't get involved when your 4 year old neice was molested) and they will

make her find out what is wrong with your nephew or remove him and get him the

help he needs. My friend on another list reminds everyone every so often

that sometimes you must use tough love..

Thanks for the validation and the suggestion. Actually CPS has been

called into their life due to the whole court case, so I don't have to

worry about that. They did move to another state, but the monitoring

has to continue according to the District Attorney. I only sent the

letter and the book about AS because I thought it might be overlooked by

social services and I truly think my nephew could be helped if some of

the roots are uncovered, not just the basic life story - which is

extremely sad in it's own right.

Thanks again Georgia,

~ Karin

[Guest guest]

> Message: 15

> Date: Sat, 04 Jan 2003 10:15:35 -0500

>

> Subject: Re: long story - talking to someone about Autism

>

> Karin ~

> What a mess! That is the first thing that comes to mind.

> I read all this and your letter, and here is my take on everything.

> 1. There was definatly bad parenting (not to mention bad homeschooling) going

on there. Because of that she may not care about her younger child and just

hope that she can get through it all and look forward to the day he moves out.

Especially after everything that happened with her oldest.

Definitely bad homeschooling. She just didn't want to homeschool those

kids. At one point she looked into putting them back in school but they

were at least a couple of years behind in grade at that point. They

would do things like hold off on ordering the textbooks and stuff

because they didn't have the money. So the kids would start their

school year late which wouldn't have been too much of a problem but then

she would let them quit when other kids were quitting in the summer and

then they wouldn't get done with the year. It turned out that if she

wanted to get them back into school, she would have had to pay to have

them tested to see what grade level they were in and that was out

because of the money it was going to cost them.

The sad thing is that I do believe she does care, but she has had so

many of her own issues that were not being dealt with that she just

couldn't do anything better than this. Looking back on it all I can see

it so clearly now that I couldn't see then. My SIL seriously needed to

be on medication but she wasn't. She may be manic-depressive I suspect.

I don't know if she is waiting for the youngest to move out, but I do

not see that happening. I can not see how he is ever going to be

self-sufficient.

> 2. I don't think that getting into porn on the internet would cause him to

molest a 4 year old unless he found child porn and thought that was " normal "

for whatever reason. Still, you would think that he would just " know " that it

was wrong. As you said, he should be attracted to girls his own age. This boy

is definatly screaming for help and you seem to be the only person listening.

Exactly. From everything I've read (and I've researched adolescent sex

offenders), the huge majority of sex offenders who start prior to their

teen years do it because it was done to them, not because they've been

looking at Playboy.

> 3. You did the right thing, don't beat yourself up over it. There is

definatly something wrong with your nephew, if it is ASD of some sort or not.

He needs help. Now the problem is weather or not your SIL cares enough to get

something done. It sounds like she has become somewhat self centered and is

trying to ignore what is going on because she doesn't want to deal with it. You

can lead a horse to water but you can't make them drink.

>

> I really hate to suggest this but if you are really concerned and you don't

think that she is doing anything you can make a phone call to child protective

services and get them involved (in fact, from what I know, I am surprised that

they didn't get involved when your 4 year old neice was molested) and they will

make her find out what is wrong with your nephew or remove him and get him the

help he needs. My friend on another list reminds everyone every so often

that sometimes you must use tough love..

Thanks for the validation and the suggestion. Actually CPS has been

called into their life due to the whole court case, so I don't have to

worry about that. They did move to another state, but the monitoring

has to continue according to the District Attorney. I only sent the

letter and the book about AS because I thought it might be overlooked by

social services and I truly think my nephew could be helped if some of

the roots are uncovered, not just the basic life story - which is

extremely sad in it's own right.

Thanks again Georgia,

~ Karin

[Guest guest]

> I already sent that letter - almost two months ago. I have not heard

> from her directly, only from a mutual friend who told me she was

> extremely mad at me and " Who did I think I was " suggesting that her son

> might be Autistic simply because my son was.

Aaahhh. I had not understood that part. I thought you had talked with the

friend, and the friend was angry, which made no sense to me.

> So I guess I was just wondering " Who did I think I was " sending it and

> wondering if I was wrong in doing so.

You thought you were a concerned relative and friend who was trying to offer

some help in a very difficult situation.

Unfortunately, like Salli's friend, your concern was felt as an " attack " on

her child. I imagine she has felt very defensive about him for a very long

time, and like Salli said, she probably feels, deep down inside, that much

of it is her fault; and has probably been blamed a lot along the way. I

know that I have had issues about 's behavior being because of

something I've done wrong, although I have always tried to be a good parent,

and he actually does have the autism dx. It is hard to get past that idea

that I should be able to 'make' him behave properly because I am his mother.

It has not helped that the early intervention people have said stupid things

such as, " Breastfeeding is a bad habit " and " If you put him on a schedule

and cleaned your house, he wouldn't have to act that way. " I sincerely hope

the people working with the family are better than that.

> I really want for their to be answers for this kid being the way he is

> and I want for there to be help for him.....

I think you are right that he had these underlying issues, and they have

been exacerbated by his life situations. I also think you are right that if

the underlying issues were addressed as well as his situation, he would have

a much better chance of improving his life.

Unfortunately, and this is so very hard to accept, we can only *offer* our

help. The other person must take actions of her own to accept our offer.

-Sara.

[Guest guest]

> I already sent that letter - almost two months ago. I have not heard

> from her directly, only from a mutual friend who told me she was

> extremely mad at me and " Who did I think I was " suggesting that her son

> might be Autistic simply because my son was.

Aaahhh. I had not understood that part. I thought you had talked with the

friend, and the friend was angry, which made no sense to me.

> So I guess I was just wondering " Who did I think I was " sending it and

> wondering if I was wrong in doing so.

You thought you were a concerned relative and friend who was trying to offer

some help in a very difficult situation.

Unfortunately, like Salli's friend, your concern was felt as an " attack " on

her child. I imagine she has felt very defensive about him for a very long

time, and like Salli said, she probably feels, deep down inside, that much

of it is her fault; and has probably been blamed a lot along the way. I

know that I have had issues about 's behavior being because of

something I've done wrong, although I have always tried to be a good parent,

and he actually does have the autism dx. It is hard to get past that idea

that I should be able to 'make' him behave properly because I am his mother.

It has not helped that the early intervention people have said stupid things

such as, " Breastfeeding is a bad habit " and " If you put him on a schedule

and cleaned your house, he wouldn't have to act that way. " I sincerely hope

the people working with the family are better than that.

> I really want for their to be answers for this kid being the way he is

> and I want for there to be help for him.....

I think you are right that he had these underlying issues, and they have

been exacerbated by his life situations. I also think you are right that if

the underlying issues were addressed as well as his situation, he would have

a much better chance of improving his life.

Unfortunately, and this is so very hard to accept, we can only *offer* our

help. The other person must take actions of her own to accept our offer.

-Sara.

[Guest guest]

> I already sent that letter - almost two months ago. I have not heard

> from her directly, only from a mutual friend who told me she was

> extremely mad at me and " Who did I think I was " suggesting that her son

> might be Autistic simply because my son was.

Aaahhh. I had not understood that part. I thought you had talked with the

friend, and the friend was angry, which made no sense to me.

> So I guess I was just wondering " Who did I think I was " sending it and

> wondering if I was wrong in doing so.

You thought you were a concerned relative and friend who was trying to offer

some help in a very difficult situation.

Unfortunately, like Salli's friend, your concern was felt as an " attack " on

her child. I imagine she has felt very defensive about him for a very long

time, and like Salli said, she probably feels, deep down inside, that much

of it is her fault; and has probably been blamed a lot along the way. I

know that I have had issues about 's behavior being because of

something I've done wrong, although I have always tried to be a good parent,

and he actually does have the autism dx. It is hard to get past that idea

that I should be able to 'make' him behave properly because I am his mother.

It has not helped that the early intervention people have said stupid things

such as, " Breastfeeding is a bad habit " and " If you put him on a schedule

and cleaned your house, he wouldn't have to act that way. " I sincerely hope

the people working with the family are better than that.

> I really want for their to be answers for this kid being the way he is

> and I want for there to be help for him.....

I think you are right that he had these underlying issues, and they have

been exacerbated by his life situations. I also think you are right that if

the underlying issues were addressed as well as his situation, he would have

a much better chance of improving his life.

Unfortunately, and this is so very hard to accept, we can only *offer* our

help. The other person must take actions of her own to accept our offer.

-Sara.

[Guest guest]

Oh god!

Don't even get me started on the crap that I went throught with professionals.

It all makes me want to cry.

When I first tried getting a dx for Savannah....wait, maybe dx isn't the right

term. When I wanted to know what the hell was wrong with her (yea, that's it)

and the ped wouldn't listen I called the health dept for the early intervention

people to come out. They sent a nurse and she did her test, said that there

were some delays, IGNORED the fact that the kids were at high risk for lead

poisoning, and that we would be getting a report in the mail. I NEVER heard

from her again and I called the health dept several times and they said that

they would look into it. Never did.

We changed drs and I got a lot of the crap that I was being an over-reactive

parent, that I was making mountains out of mole hills, that it was all a

variation of normal. When I got in the drs face and asked " Is it normal for a

child to scream for 15 mins when they wake up because they can't make the

transisiton? Is it normal for a child to scream when you try to hug them or

tickle them like they are being killed? Is it normal for a child to stare into

space and ignore you when you yell in their ear and totaly zone out? " The dr

showed no concern. No one would listen to me. What did I do? I went and got

her a cat. She was maybe 18 months old if that and we drove an hour and a half

to the only person listed in the paper as having kittens and got her a cat

(Atlanta wouldn't ket us leave without a kitten for her and she was a year older

so we really left with 2 cats). Now Savannah took to that cat and named her

Spot. She was all white with a black spot on her back and black ears (Spot died

about a year ago from an unknown cause). Well, she took to Spot and she woudn't

go anywhere in the house without that cat. Spot was the first " person " she was

able to show attention to and with all of her sensory issues she really put up

with the cat rubbing up against her, scratching her as a kitten playing rough

and everything. Spot helped a lot.

We found out a couple years later that the kids were lead poisoned. I was

pissed at the early intervention woman for not telling us that the kids were at

risk and ignoring that. The lead levels in the house was 156X over HUD levels.

I really think that contributed a lot to some of the animal deaths that we had.

Most of the kittens that we ended up with ended up dieing and so forth. All of

the cats that we had at the time have died, none of them were old by cat

standards either. I digress.

We moved here to MD. The first drs appt I had to make was for blood tests for

the kids to check their lead levels. Judy, the CPNP that sees the kids, got the

test results and hit the roof. She wanted to know why the kids were not

chelated and so forth. When I went to her with behaviour problems with Savannah

she told me that all the kids probably had some form of brain damage from the

lead and they all needed to be tested.

We went down to Childrens Hospital and spent the day down there. The dr was

good but it took us almost a year to get the report. There was no dx for any of

the kids. Said that they were at risk for ADHD, motor/visual delays, stuff like

that, that I should not be homeschooling, that they should be in school where

their behaviour and learning could be monitored (like I couldn't do that? Like

I wasn't do that? Why the hell was I there then?), blah blah blah. Keep in

mind, that around here no one is really homeschool friendly so that stuff I just

blow off for whatever reason. Also mentioned TOXIC ENCEPHALEPOTHY (sp)

We finally got the reports and Judy said that the next step was a neurologist.

ARGH! I still scream when I think of that.

We go in there and the neuro wants to know why we are there. Told him that

basically we had some behaviour problems, that the kids were dx'd lead poisoned

and that our ped told us to come. Before even looking at the kids he told us we

were wasting his time, that the damage from lead poisoning was highly

over-emphasized, that damage from lead rarely happend, etc. He finally looked

at the kids, made some comment that the child that had the highest lead level

was the one we were least worried about (didn't know at the time we should have

been worried. She had so many sensory issues so just avoided everything...we

thought she was just really easy to get along with because of how she coped).

When we got the reports from him they were all f'd up. And I mean f'd up.

There is no reason for this sort of medical incompantance. He had incorrect

information on the reports, had the kids all mixed up, " symptoms " down for wrong

children, etc. The reports were a medical nightmare. When we were having our

go around with CPS had they gotten a hold of those reports things would have

been very bad for us.

I came home from that appt and sat down in the middle of the kitchen floor and

started crying.

I had no answers, was father away from knowing what was going on than when I

started, had a house that was literally turned upside down by one child

destorying everything. Busted doors on cabinets, busted door frames, busted

doors, broken toys where she would just break her sisters stuff to break it, a

child that no form of discipline would reach, a child that by all rights was

going into first grade and was unteachable, a child that could not hold a

converstation with anyone unless it was about Furby, it goes on and on. I sat

there on the floor for a half hour and cried. I did not know what else to do.

I was suspecting Aspergers Syndrome (this is probably what is wrong with her but

when we fianlly got the dx it said ASD most likely AS), was trying to get anyone

to listen to me that she was autistic based on everything that we had delt with

from her in almost 6 years and I was blown off. " She toliet trained, she isn't

autistic " and other comments like that is what Judy kept feeding me. Now, I

forgive Judy for this. She is CPNP and it isn't her job to be able to dx

things like that and like most people would only recognize the most severe

" classical " autism, and she did give us the referals to the people that could.

Those people didn't help me. Judy couldn't help, but she did her job and sent

me to who could.

Well, I didn't know what else to do, our insurance had changed, so I sat down

with my provider directory and started flipping through it. I had done the

neurologist thing, I had done the dev. ped thing. Where did I go from there?

In my mind I said " Well, I haven't tried a PhD. They have more school and know

more theoretically. " ( " In theory " is a motto of mine. What should logically

work in theory doesn't always.) So I sat down and started at the top of the

list and called everyone in that directory. All 13 doctors that were listed. 2

were on vacation and I heard back from them two weeks later. Several told me

they didn't work with kids that young. Several told me they didn't know

anything about autism. I left several messages. 830 that night Dr Fry called

me back. The man spent 45 mins of *HIS* time on the phone with me that we were

never charged for. He asked basic questions, age, medical history, all that

jazz and listened to everything I had to say. He even told me on the phone that

it sounded like she had Aspergers. He made an appt for us to go in on Monday (I

think it was Wednesday). He asked me three times to verify her age and give him

her birthdate. The test that he had she was *just* old enough for him to use.

He did the test, told us that he would get back to us Tues or Wed. Didn't hear

from him and started panicing. Friday he called me with a huge apology that he

had not gotten back to me sooner but he had to talk to the person that created

the test because her results were " weird " and he didn't understand them. I was

so happy that he made that call and went the distance to get the answers for us.

Dr Fry has been wonderful and has been there during diffucult times when we need

him. There was one problem that I asked him about and he told me " That is just

part of her personality that you are going to have to learn to deal with. " LOL!

He didn't say that to be mean or because of whatever, he said it because it was

the truth. I was worrying about something that was pretty much insignificant

compared to other things that *I* would have to learn to adapt to, that she

wasn't going to come around to " normal " on it. Sigh.

I read everything I could on AS and ASD.

Then there were people. Just normal every day people I wanted to smack the shit

out of.

They were the ones that were expecting to see Rain Man when I said autism. You

can't explain AS without saying autism. I have given up now and just say HF

Autism. It's easier. And to say HF people don't necessarly think Rain Man,

they get a confused look. Hee hee. Anyway, I got so sick of the " She's normal,

that is just normal kid stuff " and so forth. I wanted to freaking scream. Then

there were the assholes on the homeschool usenet group that told me she was

possessed and needed an exorcism. No kidding. Got to the point I didn't want

anything to do with people.

My point to all this?

I have no clue what it was now I have typed so much.

Georga Hackworth

www.ubah.com/F1549 Enter to win $50 in FREE books!

Re: long story - talking to someone about Autism

> It has not helped that the early intervention people have said stupid

things

> such as, " Breastfeeding is a bad habit " and " If you put him on a schedule

> and cleaned your house, he wouldn't have to act that way. "

I just can't believe that.

I mean, when the early intervention people came to my house (a speech

therapist and a behavioural therapist), they told me that I communicated

with all wrong, and THAT hurt me -- but to be attacked right at the

core of your parenting, that's another thing entirely. It's adifference

between being called stupid and being called a bad parent! Stupid stings --

bad parent WOUNDS.

Busybody STRANGERS with no experience passing judgement - well, we all got

lots of that. I can't tell you how many complete strangers came up to me in

malls and told me all the poison I was giving in a bottle, never

knowing how HARD I'd tried to breastfeed...at least I could tell myself they

didn't know anything. But PROFESSIONALS. My god. It never fails to

disgust me how that happened to you. It must be a lot harder to discount

the abuse of professionals than that of complete fucking strangers.

Professionals are supposed to have the answers. You feel like they MUST be

right, no matter what abuse they heap on you.

Can you tell this still makes me angry on your behalf???

Jacquie

[Guest guest]

Oh god!

Don't even get me started on the crap that I went throught with professionals.

It all makes me want to cry.

When I first tried getting a dx for Savannah....wait, maybe dx isn't the right

term. When I wanted to know what the hell was wrong with her (yea, that's it)

and the ped wouldn't listen I called the health dept for the early intervention

people to come out. They sent a nurse and she did her test, said that there

were some delays, IGNORED the fact that the kids were at high risk for lead

poisoning, and that we would be getting a report in the mail. I NEVER heard

from her again and I called the health dept several times and they said that

they would look into it. Never did.

We changed drs and I got a lot of the crap that I was being an over-reactive

parent, that I was making mountains out of mole hills, that it was all a

variation of normal. When I got in the drs face and asked " Is it normal for a

child to scream for 15 mins when they wake up because they can't make the

transisiton? Is it normal for a child to scream when you try to hug them or

tickle them like they are being killed? Is it normal for a child to stare into

space and ignore you when you yell in their ear and totaly zone out? " The dr

showed no concern. No one would listen to me. What did I do? I went and got

her a cat. She was maybe 18 months old if that and we drove an hour and a half

to the only person listed in the paper as having kittens and got her a cat

(Atlanta wouldn't ket us leave without a kitten for her and she was a year older

so we really left with 2 cats). Now Savannah took to that cat and named her

Spot. She was all white with a black spot on her back and black ears (Spot died

about a year ago from an unknown cause). Well, she took to Spot and she woudn't

go anywhere in the house without that cat. Spot was the first " person " she was

able to show attention to and with all of her sensory issues she really put up

with the cat rubbing up against her, scratching her as a kitten playing rough

and everything. Spot helped a lot.

We found out a couple years later that the kids were lead poisoned. I was

pissed at the early intervention woman for not telling us that the kids were at

risk and ignoring that. The lead levels in the house was 156X over HUD levels.

I really think that contributed a lot to some of the animal deaths that we had.

Most of the kittens that we ended up with ended up dieing and so forth. All of

the cats that we had at the time have died, none of them were old by cat

standards either. I digress.

We moved here to MD. The first drs appt I had to make was for blood tests for

the kids to check their lead levels. Judy, the CPNP that sees the kids, got the

test results and hit the roof. She wanted to know why the kids were not

chelated and so forth. When I went to her with behaviour problems with Savannah

she told me that all the kids probably had some form of brain damage from the

lead and they all needed to be tested.

We went down to Childrens Hospital and spent the day down there. The dr was

good but it took us almost a year to get the report. There was no dx for any of

the kids. Said that they were at risk for ADHD, motor/visual delays, stuff like

that, that I should not be homeschooling, that they should be in school where

their behaviour and learning could be monitored (like I couldn't do that? Like

I wasn't do that? Why the hell was I there then?), blah blah blah. Keep in

mind, that around here no one is really homeschool friendly so that stuff I just

blow off for whatever reason. Also mentioned TOXIC ENCEPHALEPOTHY (sp)

We finally got the reports and Judy said that the next step was a neurologist.

ARGH! I still scream when I think of that.

We go in there and the neuro wants to know why we are there. Told him that

basically we had some behaviour problems, that the kids were dx'd lead poisoned

and that our ped told us to come. Before even looking at the kids he told us we

were wasting his time, that the damage from lead poisoning was highly

over-emphasized, that damage from lead rarely happend, etc. He finally looked

at the kids, made some comment that the child that had the highest lead level

was the one we were least worried about (didn't know at the time we should have

been worried. She had so many sensory issues so just avoided everything...we

thought she was just really easy to get along with because of how she coped).

When we got the reports from him they were all f'd up. And I mean f'd up.

There is no reason for this sort of medical incompantance. He had incorrect

information on the reports, had the kids all mixed up, " symptoms " down for wrong

children, etc. The reports were a medical nightmare. When we were having our

go around with CPS had they gotten a hold of those reports things would have

been very bad for us.

I came home from that appt and sat down in the middle of the kitchen floor and

started crying.

I had no answers, was father away from knowing what was going on than when I

started, had a house that was literally turned upside down by one child

destorying everything. Busted doors on cabinets, busted door frames, busted

doors, broken toys where she would just break her sisters stuff to break it, a

child that no form of discipline would reach, a child that by all rights was

going into first grade and was unteachable, a child that could not hold a

converstation with anyone unless it was about Furby, it goes on and on. I sat

there on the floor for a half hour and cried. I did not know what else to do.

I was suspecting Aspergers Syndrome (this is probably what is wrong with her but

when we fianlly got the dx it said ASD most likely AS), was trying to get anyone

to listen to me that she was autistic based on everything that we had delt with

from her in almost 6 years and I was blown off. " She toliet trained, she isn't

autistic " and other comments like that is what Judy kept feeding me. Now, I

forgive Judy for this. She is CPNP and it isn't her job to be able to dx

things like that and like most people would only recognize the most severe

" classical " autism, and she did give us the referals to the people that could.

Those people didn't help me. Judy couldn't help, but she did her job and sent

me to who could.

Well, I didn't know what else to do, our insurance had changed, so I sat down

with my provider directory and started flipping through it. I had done the

neurologist thing, I had done the dev. ped thing. Where did I go from there?

In my mind I said " Well, I haven't tried a PhD. They have more school and know

more theoretically. " ( " In theory " is a motto of mine. What should logically

work in theory doesn't always.) So I sat down and started at the top of the

list and called everyone in that directory. All 13 doctors that were listed. 2

were on vacation and I heard back from them two weeks later. Several told me

they didn't work with kids that young. Several told me they didn't know

anything about autism. I left several messages. 830 that night Dr Fry called

me back. The man spent 45 mins of *HIS* time on the phone with me that we were

never charged for. He asked basic questions, age, medical history, all that

jazz and listened to everything I had to say. He even told me on the phone that

it sounded like she had Aspergers. He made an appt for us to go in on Monday (I

think it was Wednesday). He asked me three times to verify her age and give him

her birthdate. The test that he had she was *just* old enough for him to use.

He did the test, told us that he would get back to us Tues or Wed. Didn't hear

from him and started panicing. Friday he called me with a huge apology that he

had not gotten back to me sooner but he had to talk to the person that created

the test because her results were " weird " and he didn't understand them. I was

so happy that he made that call and went the distance to get the answers for us.

Dr Fry has been wonderful and has been there during diffucult times when we need

him. There was one problem that I asked him about and he told me " That is just

part of her personality that you are going to have to learn to deal with. " LOL!

He didn't say that to be mean or because of whatever, he said it because it was

the truth. I was worrying about something that was pretty much insignificant

compared to other things that *I* would have to learn to adapt to, that she

wasn't going to come around to " normal " on it. Sigh.

I read everything I could on AS and ASD.

Then there were people. Just normal every day people I wanted to smack the shit

out of.

They were the ones that were expecting to see Rain Man when I said autism. You

can't explain AS without saying autism. I have given up now and just say HF

Autism. It's easier. And to say HF people don't necessarly think Rain Man,

they get a confused look. Hee hee. Anyway, I got so sick of the " She's normal,

that is just normal kid stuff " and so forth. I wanted to freaking scream. Then

there were the assholes on the homeschool usenet group that told me she was

possessed and needed an exorcism. No kidding. Got to the point I didn't want

anything to do with people.

My point to all this?

I have no clue what it was now I have typed so much.

Georga Hackworth

www.ubah.com/F1549 Enter to win $50 in FREE books!

Re: long story - talking to someone about Autism

> It has not helped that the early intervention people have said stupid

things

> such as, " Breastfeeding is a bad habit " and " If you put him on a schedule

> and cleaned your house, he wouldn't have to act that way. "

I just can't believe that.

I mean, when the early intervention people came to my house (a speech

therapist and a behavioural therapist), they told me that I communicated

with all wrong, and THAT hurt me -- but to be attacked right at the

core of your parenting, that's another thing entirely. It's adifference

between being called stupid and being called a bad parent! Stupid stings --

bad parent WOUNDS.

Busybody STRANGERS with no experience passing judgement - well, we all got

lots of that. I can't tell you how many complete strangers came up to me in

malls and told me all the poison I was giving in a bottle, never

knowing how HARD I'd tried to breastfeed...at least I could tell myself they

didn't know anything. But PROFESSIONALS. My god. It never fails to

disgust me how that happened to you. It must be a lot harder to discount

the abuse of professionals than that of complete fucking strangers.

Professionals are supposed to have the answers. You feel like they MUST be

right, no matter what abuse they heap on you.

Can you tell this still makes me angry on your behalf???

Jacquie

[Guest guest]

Oh god!

Don't even get me started on the crap that I went throught with professionals.

It all makes me want to cry.

When I first tried getting a dx for Savannah....wait, maybe dx isn't the right

term. When I wanted to know what the hell was wrong with her (yea, that's it)

and the ped wouldn't listen I called the health dept for the early intervention

people to come out. They sent a nurse and she did her test, said that there

were some delays, IGNORED the fact that the kids were at high risk for lead

poisoning, and that we would be getting a report in the mail. I NEVER heard

from her again and I called the health dept several times and they said that

they would look into it. Never did.

We changed drs and I got a lot of the crap that I was being an over-reactive

parent, that I was making mountains out of mole hills, that it was all a

variation of normal. When I got in the drs face and asked " Is it normal for a

child to scream for 15 mins when they wake up because they can't make the

transisiton? Is it normal for a child to scream when you try to hug them or

tickle them like they are being killed? Is it normal for a child to stare into

space and ignore you when you yell in their ear and totaly zone out? " The dr

showed no concern. No one would listen to me. What did I do? I went and got

her a cat. She was maybe 18 months old if that and we drove an hour and a half

to the only person listed in the paper as having kittens and got her a cat

(Atlanta wouldn't ket us leave without a kitten for her and she was a year older

so we really left with 2 cats). Now Savannah took to that cat and named her

Spot. She was all white with a black spot on her back and black ears (Spot died

about a year ago from an unknown cause). Well, she took to Spot and she woudn't

go anywhere in the house without that cat. Spot was the first " person " she was

able to show attention to and with all of her sensory issues she really put up

with the cat rubbing up against her, scratching her as a kitten playing rough

and everything. Spot helped a lot.

We found out a couple years later that the kids were lead poisoned. I was

pissed at the early intervention woman for not telling us that the kids were at

risk and ignoring that. The lead levels in the house was 156X over HUD levels.

I really think that contributed a lot to some of the animal deaths that we had.

Most of the kittens that we ended up with ended up dieing and so forth. All of

the cats that we had at the time have died, none of them were old by cat

standards either. I digress.

We moved here to MD. The first drs appt I had to make was for blood tests for

the kids to check their lead levels. Judy, the CPNP that sees the kids, got the

test results and hit the roof. She wanted to know why the kids were not

chelated and so forth. When I went to her with behaviour problems with Savannah

she told me that all the kids probably had some form of brain damage from the

lead and they all needed to be tested.

We went down to Childrens Hospital and spent the day down there. The dr was

good but it took us almost a year to get the report. There was no dx for any of

the kids. Said that they were at risk for ADHD, motor/visual delays, stuff like

that, that I should not be homeschooling, that they should be in school where

their behaviour and learning could be monitored (like I couldn't do that? Like

I wasn't do that? Why the hell was I there then?), blah blah blah. Keep in

mind, that around here no one is really homeschool friendly so that stuff I just

blow off for whatever reason. Also mentioned TOXIC ENCEPHALEPOTHY (sp)

We finally got the reports and Judy said that the next step was a neurologist.

ARGH! I still scream when I think of that.

We go in there and the neuro wants to know why we are there. Told him that

basically we had some behaviour problems, that the kids were dx'd lead poisoned

and that our ped told us to come. Before even looking at the kids he told us we

were wasting his time, that the damage from lead poisoning was highly

over-emphasized, that damage from lead rarely happend, etc. He finally looked

at the kids, made some comment that the child that had the highest lead level

was the one we were least worried about (didn't know at the time we should have

been worried. She had so many sensory issues so just avoided everything...we

thought she was just really easy to get along with because of how she coped).

When we got the reports from him they were all f'd up. And I mean f'd up.

There is no reason for this sort of medical incompantance. He had incorrect

information on the reports, had the kids all mixed up, " symptoms " down for wrong

children, etc. The reports were a medical nightmare. When we were having our

go around with CPS had they gotten a hold of those reports things would have

been very bad for us.

I came home from that appt and sat down in the middle of the kitchen floor and

started crying.

I had no answers, was father away from knowing what was going on than when I

started, had a house that was literally turned upside down by one child

destorying everything. Busted doors on cabinets, busted door frames, busted

doors, broken toys where she would just break her sisters stuff to break it, a

child that no form of discipline would reach, a child that by all rights was

going into first grade and was unteachable, a child that could not hold a

converstation with anyone unless it was about Furby, it goes on and on. I sat

there on the floor for a half hour and cried. I did not know what else to do.

I was suspecting Aspergers Syndrome (this is probably what is wrong with her but

when we fianlly got the dx it said ASD most likely AS), was trying to get anyone

to listen to me that she was autistic based on everything that we had delt with

from her in almost 6 years and I was blown off. " She toliet trained, she isn't

autistic " and other comments like that is what Judy kept feeding me. Now, I

forgive Judy for this. She is CPNP and it isn't her job to be able to dx

things like that and like most people would only recognize the most severe

" classical " autism, and she did give us the referals to the people that could.

Those people didn't help me. Judy couldn't help, but she did her job and sent

me to who could.

Well, I didn't know what else to do, our insurance had changed, so I sat down

with my provider directory and started flipping through it. I had done the

neurologist thing, I had done the dev. ped thing. Where did I go from there?

In my mind I said " Well, I haven't tried a PhD. They have more school and know

more theoretically. " ( " In theory " is a motto of mine. What should logically

work in theory doesn't always.) So I sat down and started at the top of the

list and called everyone in that directory. All 13 doctors that were listed. 2

were on vacation and I heard back from them two weeks later. Several told me

they didn't work with kids that young. Several told me they didn't know

anything about autism. I left several messages. 830 that night Dr Fry called

me back. The man spent 45 mins of *HIS* time on the phone with me that we were

never charged for. He asked basic questions, age, medical history, all that

jazz and listened to everything I had to say. He even told me on the phone that

it sounded like she had Aspergers. He made an appt for us to go in on Monday (I

think it was Wednesday). He asked me three times to verify her age and give him

her birthdate. The test that he had she was *just* old enough for him to use.

He did the test, told us that he would get back to us Tues or Wed. Didn't hear

from him and started panicing. Friday he called me with a huge apology that he

had not gotten back to me sooner but he had to talk to the person that created

the test because her results were " weird " and he didn't understand them. I was

so happy that he made that call and went the distance to get the answers for us.

Dr Fry has been wonderful and has been there during diffucult times when we need

him. There was one problem that I asked him about and he told me " That is just

part of her personality that you are going to have to learn to deal with. " LOL!

He didn't say that to be mean or because of whatever, he said it because it was

the truth. I was worrying about something that was pretty much insignificant

compared to other things that *I* would have to learn to adapt to, that she

wasn't going to come around to " normal " on it. Sigh.

I read everything I could on AS and ASD.

Then there were people. Just normal every day people I wanted to smack the shit

out of.

They were the ones that were expecting to see Rain Man when I said autism. You

can't explain AS without saying autism. I have given up now and just say HF

Autism. It's easier. And to say HF people don't necessarly think Rain Man,

they get a confused look. Hee hee. Anyway, I got so sick of the " She's normal,

that is just normal kid stuff " and so forth. I wanted to freaking scream. Then

there were the assholes on the homeschool usenet group that told me she was

possessed and needed an exorcism. No kidding. Got to the point I didn't want

anything to do with people.

My point to all this?

I have no clue what it was now I have typed so much.

Georga Hackworth

www.ubah.com/F1549 Enter to win $50 in FREE books!

Re: long story - talking to someone about Autism

> It has not helped that the early intervention people have said stupid

things

> such as, " Breastfeeding is a bad habit " and " If you put him on a schedule

> and cleaned your house, he wouldn't have to act that way. "

I just can't believe that.

I mean, when the early intervention people came to my house (a speech

therapist and a behavioural therapist), they told me that I communicated

with all wrong, and THAT hurt me -- but to be attacked right at the

core of your parenting, that's another thing entirely. It's adifference

between being called stupid and being called a bad parent! Stupid stings --

bad parent WOUNDS.

Busybody STRANGERS with no experience passing judgement - well, we all got

lots of that. I can't tell you how many complete strangers came up to me in

malls and told me all the poison I was giving in a bottle, never

knowing how HARD I'd tried to breastfeed...at least I could tell myself they

didn't know anything. But PROFESSIONALS. My god. It never fails to

disgust me how that happened to you. It must be a lot harder to discount

the abuse of professionals than that of complete fucking strangers.

Professionals are supposed to have the answers. You feel like they MUST be

right, no matter what abuse they heap on you.

Can you tell this still makes me angry on your behalf???

Jacquie

[Guest guest]

> It has not helped that the early intervention people have said stupid

things

> such as, " Breastfeeding is a bad habit " and " If you put him on a schedule

> and cleaned your house, he wouldn't have to act that way. "

I just can't believe that.

I mean, when the early intervention people came to my house (a speech

therapist and a behavioural therapist), they told me that I communicated

with all wrong, and THAT hurt me -- but to be attacked right at the

core of your parenting, that's another thing entirely. It's adifference

between being called stupid and being called a bad parent! Stupid stings --

bad parent WOUNDS.

Busybody STRANGERS with no experience passing judgement - well, we all got

lots of that. I can't tell you how many complete strangers came up to me in

malls and told me all the poison I was giving in a bottle, never

knowing how HARD I'd tried to breastfeed...at least I could tell myself they

didn't know anything. But PROFESSIONALS. My god. It never fails to

disgust me how that happened to you. It must be a lot harder to discount

the abuse of professionals than that of complete fucking strangers.

Professionals are supposed to have the answers. You feel like they MUST be

right, no matter what abuse they heap on you.

Can you tell this still makes me angry on your behalf???

Jacquie

[Guest guest]

<<<<. Then there were the assholes on the homeschool usenet group that told

me she was possessed and needed an exorcism.>>>>

Holy Shit, Sorry but this just blows my mind. I guess all in all it doesn't

surprise me, I have heard of people saying the same thing.

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.434 / Virus Database: 243 - Release Date: 12/25/2002

[Guest guest]

<<<<. Then there were the assholes on the homeschool usenet group that told

me she was possessed and needed an exorcism.>>>>

Holy Shit, Sorry but this just blows my mind. I guess all in all it doesn't

surprise me, I have heard of people saying the same thing.

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.434 / Virus Database: 243 - Release Date: 12/25/2002

[Guest guest]

Sissi, This is exactly one of the things that clued my friend(the

school secretary with the son who diagnosed himself) into the fact

that there was something wrong. Her son had absolutely NO desire to

learn to drive. Never intended to do it. It was too dangerous! She

knew that wasn't normal for a sixteen year old boy! Leggs

>

> Guess what made my brother decide something was wrong?

>

> He bought his son a car -- a convertible. The boy has never driven

it and

> has no desire to do so. He refuses to get a driver's license. Can

you

> imagine a 16YO boy doing that? I can't. he has a lot of other

problems too,

> including no friends.

>

[Guest guest]

THANK YOU!!!

That just really upset me when I was told that. I cried I was so frustrated.

Is it any wonder I hate people?

Georga Hackworth

www.ubah.com/F1549 Enter to win $50 in FREE books!

Re: long story - talking to someone about Autism

<<<<. Then there were the assholes on the homeschool usenet group that

told me she was possessed and needed an exorcism.>>>>

Holy Shit, Sorry but this just blows my mind. I guess all in all it doesn't

surprise me, I have heard of people saying the same thing.

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.434 / Virus Database: 243 - Release Date: 12/25/2002

[Guest guest]

THANK YOU!!!

That just really upset me when I was told that. I cried I was so frustrated.

Is it any wonder I hate people?

Georga Hackworth

www.ubah.com/F1549 Enter to win $50 in FREE books!

Re: long story - talking to someone about Autism

<<<<. Then there were the assholes on the homeschool usenet group that

told me she was possessed and needed an exorcism.>>>>

Holy Shit, Sorry but this just blows my mind. I guess all in all it doesn't

surprise me, I have heard of people saying the same thing.

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.434 / Virus Database: 243 - Release Date: 12/25/2002

[Guest guest]

>

>

> He would literally freak out and talk about suicide when things

were mentioned like moving out of the house or selling a car. These

things had to stay the same even though the house they lived in was

literally falling apart. The kid was talking about wanting to die at

5 years old. I know this is not normal but I don't know if it has

anything to do with AS or not. Maybe some other situation in life.

>

Some of the things you say remind me of . Others are the exact

opposite. is very loving and likes to ride his bike a lot. He's

very active, doesn't mind dirt on his clothes but heaven forbid they

get wet! But when 's frustrated he will say, " I should just kill

myself " " I wish I was dead " " I should just move because no one wants

me " " I want to die. "

He's seven.

It tears my heart out to hear him say these things but I'm learning

not to take it too seriously. He really doesn't want to die. He wants

whatever the problem is to just go away but he doesn't have the words

to express his frustration and hurt. So far as I know, he's never

been molested (God I pray not!) or seriously harmed by anyone. I know

staying at his former babysitter's house was traumatic for him but

that was because of the conflicting message the sitter was sending by

allowing her children to hit and enforcing strict punishments

when he did the same to them.

is willful but he doesn't know how to lie. He will omit things

to avoid trouble or to try to get what he wants, but he doesn't lie

about events. He might not remember them the same as other

participants though. If that makes sense. It's the truth as he sees

it.

may be AS, I don't know. He goes for testing at the end of

March. He's definitely inflexible and explosive. He hits " vapor lock "

when he gets mad or frustrated and he can't form a coherent thought

at that time.

It sounds to me like your nephew started out with some issues that

obviously went undx'd. But I think there were things that happened

after that the family doesn't know about or you're not being told.

Torturing yourself with " what if's " and " why's " won't change what's

happened. You've done what you can and you've expressed your

concerns. (very eloquently too) I think if you get a response, it

will be an angry one. Your sil obviously still can't cope with the

fact that there was something wrong from the very start.

I'm glad to hear he's in therapy. I hope he has an excellent

therapist who's able to help him.

You and your family are in my prayers.

Tina

[Guest guest]

>

>

> He would literally freak out and talk about suicide when things

were mentioned like moving out of the house or selling a car. These

things had to stay the same even though the house they lived in was

literally falling apart. The kid was talking about wanting to die at

5 years old. I know this is not normal but I don't know if it has

anything to do with AS or not. Maybe some other situation in life.

>

Some of the things you say remind me of . Others are the exact

opposite. is very loving and likes to ride his bike a lot. He's

very active, doesn't mind dirt on his clothes but heaven forbid they

get wet! But when 's frustrated he will say, " I should just kill

myself " " I wish I was dead " " I should just move because no one wants

me " " I want to die. "

He's seven.

It tears my heart out to hear him say these things but I'm learning

not to take it too seriously. He really doesn't want to die. He wants

whatever the problem is to just go away but he doesn't have the words

to express his frustration and hurt. So far as I know, he's never

been molested (God I pray not!) or seriously harmed by anyone. I know

staying at his former babysitter's house was traumatic for him but

that was because of the conflicting message the sitter was sending by

allowing her children to hit and enforcing strict punishments

when he did the same to them.

is willful but he doesn't know how to lie. He will omit things

to avoid trouble or to try to get what he wants, but he doesn't lie

about events. He might not remember them the same as other

participants though. If that makes sense. It's the truth as he sees

it.

may be AS, I don't know. He goes for testing at the end of

March. He's definitely inflexible and explosive. He hits " vapor lock "

when he gets mad or frustrated and he can't form a coherent thought

at that time.

It sounds to me like your nephew started out with some issues that

obviously went undx'd. But I think there were things that happened

after that the family doesn't know about or you're not being told.

Torturing yourself with " what if's " and " why's " won't change what's

happened. You've done what you can and you've expressed your

concerns. (very eloquently too) I think if you get a response, it

will be an angry one. Your sil obviously still can't cope with the

fact that there was something wrong from the very start.

I'm glad to hear he's in therapy. I hope he has an excellent

therapist who's able to help him.

You and your family are in my prayers.

Tina

[Guest guest]

>

>

> He would literally freak out and talk about suicide when things

were mentioned like moving out of the house or selling a car. These

things had to stay the same even though the house they lived in was

literally falling apart. The kid was talking about wanting to die at

5 years old. I know this is not normal but I don't know if it has

anything to do with AS or not. Maybe some other situation in life.

>

Some of the things you say remind me of . Others are the exact

opposite. is very loving and likes to ride his bike a lot. He's

very active, doesn't mind dirt on his clothes but heaven forbid they

get wet! But when 's frustrated he will say, " I should just kill

myself " " I wish I was dead " " I should just move because no one wants

me " " I want to die. "

He's seven.

It tears my heart out to hear him say these things but I'm learning

not to take it too seriously. He really doesn't want to die. He wants

whatever the problem is to just go away but he doesn't have the words

to express his frustration and hurt. So far as I know, he's never

been molested (God I pray not!) or seriously harmed by anyone. I know

staying at his former babysitter's house was traumatic for him but

that was because of the conflicting message the sitter was sending by

allowing her children to hit and enforcing strict punishments

when he did the same to them.

is willful but he doesn't know how to lie. He will omit things

to avoid trouble or to try to get what he wants, but he doesn't lie

about events. He might not remember them the same as other

participants though. If that makes sense. It's the truth as he sees

it.

may be AS, I don't know. He goes for testing at the end of

March. He's definitely inflexible and explosive. He hits " vapor lock "

when he gets mad or frustrated and he can't form a coherent thought

at that time.

It sounds to me like your nephew started out with some issues that

obviously went undx'd. But I think there were things that happened

after that the family doesn't know about or you're not being told.

Torturing yourself with " what if's " and " why's " won't change what's

happened. You've done what you can and you've expressed your

concerns. (very eloquently too) I think if you get a response, it

will be an angry one. Your sil obviously still can't cope with the

fact that there was something wrong from the very start.

I'm glad to hear he's in therapy. I hope he has an excellent

therapist who's able to help him.

You and your family are in my prayers.

Tina

[Guest guest]

>>

> I saw our GP last week and she said to give him a label would be

disastrous and I said not too if it is warranted would not get him what he

needs either. So what do you do???

>

Jen:

Kids lose labels, especially when they are given very early.

Salli

[Guest guest]

>>

> I saw our GP last week and she said to give him a label would be

disastrous and I said not too if it is warranted would not get him what he

needs either. So what do you do???

>

Jen:

Kids lose labels, especially when they are given very early.

Salli

[Guest guest]

>>

> I saw our GP last week and she said to give him a label would be

disastrous and I said not too if it is warranted would not get him what he

needs either. So what do you do???

>

Jen:

Kids lose labels, especially when they are given very early.

Salli

[Guest guest]

Wow Georga.

I'm struck by how many of us were brushed off or

treated badly by the so-called experts. We should

write a book. Put all of our stories together. We

could call it " The Autism Experience " or something

like that. And it would be required reading for all

health care students and professionals.

(((Georga)))

Tuna

=====

You can learn many things from children.

How much patience you have, for instance.

- lin P.

______________________________________________________________________

Post your free ad now! http://personals.yahoo.ca