Our story

February 15, 2007

Your daughter is blessed to have you on her side because without

advocacy these children get pushed aside into the " they are normal

just on the low end, or.etc. My daughter was diagnosed at 13. I knew

she was different because at the park she stayed alone and preferred

to pick up rocks and walk on the grass than jump up to the slide. I

was in the medical field too and I thought I should have known but

really many professionals still don't have a clue about what our kids

experience. Now that she has a diagnosis family give her a little

more " tolerance " for being different but teachers don't believe she's

being affected that severely, because after all she is " gifted " .

Sadly, this gift is actually what's gotten in the way of her getting

help sooner. Keep encouraging your little girl. I still tell my

daughter " You're stronger than you think " .

>

> I haven't posted for a while, so just wanted to share and update

> everyone.

>

> When our daughter Lydia was one and a half, I knew that something

> was different about her, but didn't know what it was. Being a

> nurse, you think I should have known, but didn't.

>

> My wife, in-laws, parents, just thought i was over-reacting and

told

> us to wait. I thought, wait for what, for her to be 5 yrs old and

> that much further behind. I got her speech tested at two years of

> age and before I did that, I fought with the pediatrician to get a

> hearing test, etc.

>

> At two, they said that there was nothing wrong, but her speech was

> just at the low end of normal, i.e., she is ok, just wait. Again,

> wait for what?

>

> I took her back at 3 yrs of age and low and behold she was

evaluated

> as having expressive and receptive language problems. At that

time,

> I had no idea she may have Aspergers as well.

>

> When they told me that she was eligible for speech therapy through

> the school and that it was 4 times per week, I was ecstatic that

> someone was finally willing to help!!

>

> As the therapy continued, we noticed that the behavior, tantrums,

> head-banging had still not improved, so the school evaluated her

for

> Aspergers and she was diagnosed a few weeks ago.

>

> It has been heart-breaking, but also a blessing that we now know

> what we are dealing with and can help her.

>

> I can't tell you the number of relatives who have criticized our

> parenting style and said that we are too permissive, she just needs

> to be beat, she's spoiled, etc. Those people are no longer in our

> life, because I feel that they are not a positive influence on my

> child's life. You know who you can really stick with and count on

> when things get tough and the people that are too busy, too

> impatient to deal with things are the ones that run when the fire

> gets hot.

>

> So, now at 3 and a half she is doing much better. Her speech has

> improved greatly, she can communicate with us somewhat and make her

> needs known, but still can't have a conversation, i.e. we can't

ask

> her what she did today and have her tell us, but that will come

with

> time.

>

> I know that my child is only 3 and a half, but I can't express the

> need to get help as soon as possible and continue to fight the

> system. If you can't help your child, then who will?

>

> My wife wasn't completely supportive at first, but is now.

>

> Also, the best way to deal with the tantrums, delays, anger and

just

> outright rage is patience, patience, patience, and a lot of love.

> YOu still have to set boundaries, but be patient.

>

> For us, the time-out chair works great.

>

> Take care everyone and thank you for listening.

>

> Dave

>

> oh, I forgot to mention the OCD behavior, fixating on comfort

items,

> etc.

>

> Not just blankets, but horses, pearls, whatever. One of the things

> they (books, experts) tell you is that kids with AS will fixate on

> comfort items and carry small items with them.

>

> To adapt to this behavior we have just purchased several of the

> exact same comfort item.

>

> There was a tiny baby bottle that she took from a craft item at my

> MIL's house. She would ask for it every morning and a tantrum

would

> ensue until it was found, well I went to 's and bought a

pack

> of 200 for her for $2.00 so that would not happen.

>

> Does anyone else have similar issues? Please share

>

February 15, 2007

Hi

My dd is also 3.5 yo and dx AS this past May!

Your history sounds similar.

>>>clip>>>

oh, I forgot to mention the OCD behavior, fixating on comfort items,

etc.

Not just blankets, but horses, pearls, whatever. One of the things

they (books, experts) tell you is that kids with AS will fixate on

comfort items and carry small items with them.

>>>>

I can totally relate. My ds had comfort items and we ran into the problem of

not being able to replace them when they were worn out. So with a as soon

as I saw a comfort item that I knew was here to stay (her bear blanket...little

bear head on a little blanket) I found 2 more and started rotating them, for

washing and such and to make sure they wear evenly :-)

She then added a monkey (for a while her nick name was chunky monkey...not

anymore) it is a TY brand monkey so I had to order 2 more " collector " ones off

e-bay....at a hefty price but well worth it.

I don't think she knows there are 3 sets. But we cant do or go any where

without them. She holds bear right up by her lips and kindof suckles with her

mouth shut...oh and she has to " fix " bears ears just " so " ...so that it hits her

nose right...oh well it works and just last week she verbalized that " bear helps

me when I am scared or hurt or feel bad " It was an awesome moment!

a does like to have small items in her hands, she would always hold 2-3

items (balls ect) in her hands while crawling.

Never knew the comfort thing...fixating on the item was an AS

thing...interesting :-)

Oh yeah...2 months before she was DX AS the CDSA (state EI) spent an hour

telling us why she wasn't AS...but said they would DX OCD...Whatever...we went

to a developmental Pediatrician and he DX AS! But I hear ya on the OCD stuff!

- C.

Mom to Cassie 15 PCOS, Austin 13 ADHD and a 3 HFA/AS & SPD/SID

( ) Our story

I haven't posted for a while, so just wanted to share and update

everyone.

When our daughter Lydia was one and a half, I knew that something

was different about her, but didn't know what it was. Being a

nurse, you think I should have known, but didn't.

My wife, in-laws, parents, just thought i was over-reacting and told

us to wait. I thought, wait for what, for her to be 5 yrs old and

that much further behind. I got her speech tested at two years of

age and before I did that, I fought with the pediatrician to get a

hearing test, etc.

At two, they said that there was nothing wrong, but her speech was

just at the low end of normal, i.e., she is ok, just wait. Again,

wait for what?

I took her back at 3 yrs of age and low and behold she was evaluated

as having expressive and receptive language problems. At that time,

I had no idea she may have Aspergers as well.

When they told me that she was eligible for speech therapy through

the school and that it was 4 times per week, I was ecstatic that

someone was finally willing to help!!

As the therapy continued, we noticed that the behavior, tantrums,

head-banging had still not improved, so the school evaluated her for

Aspergers and she was diagnosed a few weeks ago.

It has been heart-breaking, but also a blessing that we now know

what we are dealing with and can help her.

I can't tell you the number of relatives who have criticized our

parenting style and said that we are too permissive, she just needs

to be beat, she's spoiled, etc. Those people are no longer in our

life, because I feel that they are not a positive influence on my

child's life. You know who you can really stick with and count on

when things get tough and the people that are too busy, too

impatient to deal with things are the ones that run when the fire

gets hot.

So, now at 3 and a half she is doing much better. Her speech has

improved greatly, she can communicate with us somewhat and make her

needs known, but still can't have a conversation, i.e. we can't ask

her what she did today and have her tell us, but that will come with

time.

I know that my child is only 3 and a half, but I can't express the

need to get help as soon as possible and continue to fight the

system. If you can't help your child, then who will?

My wife wasn't completely supportive at first, but is now.

Also, the best way to deal with the tantrums, delays, anger and just

outright rage is patience, patience, patience, and a lot of love.

YOu still have to set boundaries, but be patient.

For us, the time-out chair works great.

Take care everyone and thank you for listening.

Dave

oh, I forgot to mention the OCD behavior, fixating on comfort items,

etc.

Not just blankets, but horses, pearls, whatever. One of the things

they (books, experts) tell you is that kids with AS will fixate on

comfort items and carry small items with them.

To adapt to this behavior we have just purchased several of the

exact same comfort item.

There was a tiny baby bottle that she took from a craft item at my

MIL's house. She would ask for it every morning and a tantrum would

ensue until it was found, well I went to 's and bought a pack

of 200 for her for $2.00 so that would not happen.

Does anyone else have similar issues? Please share

February 15, 2007

Yes , my son was like your daughter in many ways.

He is now 13 yrs old. But, when he was 1 yrs old he loved this stuffed bear and

wouldn't sleep or eat or anything without it. We thought this was cute and

normal. But he didn't let it go even at age 5, he still was very insecure

without the bear, and we were trying to get him to like other things. He

wouldn't play with cars....he liked to play with beads and with strings of beads

[like for a christmas tree].

He now is older but has a huge collection of stuffed animals.....and they

can't be just ANY stuffed animal.....it has to have a look about the eyes that

only he can really see, and he makes high-squeeky noises when he pretends that

the animals are talking. It's very complicated to explain, but he don't really

love on them and all.....he makes these very funny and crazy cartoons out of

them.....kinda like normal cartoons and he's the narator and the producer and

the audience too, [and will laugh at his own cartoons]. He can get his little

brother who is 9 yrs old and [normal]to play this game with him alot as well.

I thank God for his little brother.....he forces my aspie out of his own

little world and into ours. There is nothing like a little brother with a

football saying 'heads up'! forcing him to catch a ball....when he isn't

interested in it at all. Also, a little brother who comes up and tackles you and

tries to pin you and can almost do so.......he is giving life in ways he don't

even know to a big brother who is easily drawn into his own world. He is not

only sometimes joining his big brother into that strange little world.....but

forcing him to join into his own as well, and will get him to play. Of course

sometimes they fight, but they are brothers and brothers do that. I did not

plan my second child, but

I thank God daily that he gave him to us, God knows what He is doing.

( ) Our story

I haven't posted for a while, so just wanted to share and update

everyone.

When our daughter Lydia was one and a half, I knew that something

was different about her, but didn't know what it was. Being a

nurse, you think I should have known, but didn't.

My wife, in-laws, parents, just thought i was over-reacting and told

us to wait. I thought, wait for what, for her to be 5 yrs old and

that much further behind. I got her speech tested at two years of

age and before I did that, I fought with the pediatrician to get a

hearing test, etc.

At two, they said that there was nothing wrong, but her speech was

just at the low end of normal, i.e., she is ok, just wait. Again,

wait for what?

I took her back at 3 yrs of age and low and behold she was evaluated

as having expressive and receptive language problems. At that time,

I had no idea she may have Aspergers as well.

When they told me that she was eligible for speech therapy through

the school and that it was 4 times per week, I was ecstatic that

someone was finally willing to help!!

As the therapy continued, we noticed that the behavior, tantrums,

head-banging had still not improved, so the school evaluated her for

Aspergers and she was diagnosed a few weeks ago.

It has been heart-breaking, but also a blessing that we now know

what we are dealing with and can help her.

I can't tell you the number of relatives who have criticized our

parenting style and said that we are too permissive, she just needs

to be beat, she's spoiled, etc. Those people are no longer in our

life, because I feel that they are not a positive influence on my

child's life. You know who you can really stick with and count on

when things get tough and the people that are too busy, too

impatient to deal with things are the ones that run when the fire

gets hot.

So, now at 3 and a half she is doing much better. Her speech has

improved greatly, she can communicate with us somewhat and make her

needs known, but still can't have a conversation, i.e. we can't ask

her what she did today and have her tell us, but that will come with

time.

I know that my child is only 3 and a half, but I can't express the

need to get help as soon as possible and continue to fight the

system. If you can't help your child, then who will?

My wife wasn't completely supportive at first, but is now.

Also, the best way to deal with the tantrums, delays, anger and just

outright rage is patience, patience, patience, and a lot of love.

YOu still have to set boundaries, but be patient.

For us, the time-out chair works great.

Take care everyone and thank you for listening.

Dave

oh, I forgot to mention the OCD behavior, fixating on comfort items,

etc.

Not just blankets, but horses, pearls, whatever. One of the things

they (books, experts) tell you is that kids with AS will fixate on

comfort items and carry small items with them.

To adapt to this behavior we have just purchased several of the

exact same comfort item.

There was a tiny baby bottle that she took from a craft item at my

MIL's house. She would ask for it every morning and a tantrum would

ensue until it was found, well I went to 's and bought a pack

of 200 for her for $2.00 so that would not happen.

Does anyone else have similar issues? Please share

February 16, 2007

Ian, who's 15, has always liked to hold soft, round things. He's also fixated

on Kirby and

Pokemon video games--both of which have cute little round characters. Ian

carries a

stuffed Pokemon character around with him sometimes and plays with it. I try to

limit him

doing that in public--although I did let him take it to his social skills group

just so his

therapist could see what I was talking about. It's disturbing when a teenage

boy is still

playing with cute little stuffed toys, but I try to think of it in terms of the

fact that he's

emotionally and behaviorally delayed--and not ready to be as grown up as he is

chronologically. At the same time, I've started working him through Roxanna's

list of

independent living skills. You really wonder where this is all going sometimes,

you know?

Sue C.

>

> I haven't posted for a while, so just wanted to share and update

> everyone.

>

> When our daughter Lydia was one and a half, I knew that something

> was different about her, but didn't know what it was. Being a

> nurse, you think I should have known, but didn't.

>

> My wife, in-laws, parents, just thought i was over-reacting and told

> us to wait. I thought, wait for what, for her to be 5 yrs old and

> that much further behind. I got her speech tested at two years of

> age and before I did that, I fought with the pediatrician to get a

> hearing test, etc.

>

> At two, they said that there was nothing wrong, but her speech was

> just at the low end of normal, i.e., she is ok, just wait. Again,

> wait for what?

>

> I took her back at 3 yrs of age and low and behold she was evaluated

> as having expressive and receptive language problems. At that time,

> I had no idea she may have Aspergers as well.

>

> When they told me that she was eligible for speech therapy through

> the school and that it was 4 times per week, I was ecstatic that

> someone was finally willing to help!!

>

> As the therapy continued, we noticed that the behavior, tantrums,

> head-banging had still not improved, so the school evaluated her for

> Aspergers and she was diagnosed a few weeks ago.

>

> It has been heart-breaking, but also a blessing that we now know

> what we are dealing with and can help her.

>

> I can't tell you the number of relatives who have criticized our

> parenting style and said that we are too permissive, she just needs

> to be beat, she's spoiled, etc. Those people are no longer in our

> life, because I feel that they are not a positive influence on my

> child's life. You know who you can really stick with and count on

> when things get tough and the people that are too busy, too

> impatient to deal with things are the ones that run when the fire

> gets hot.

>

> So, now at 3 and a half she is doing much better. Her speech has

> improved greatly, she can communicate with us somewhat and make her

> needs known, but still can't have a conversation, i.e. we can't ask

> her what she did today and have her tell us, but that will come with

> time.

>

> I know that my child is only 3 and a half, but I can't express the

> need to get help as soon as possible and continue to fight the

> system. If you can't help your child, then who will?

>

> My wife wasn't completely supportive at first, but is now.

>

> Also, the best way to deal with the tantrums, delays, anger and just

> outright rage is patience, patience, patience, and a lot of love.

> YOu still have to set boundaries, but be patient.

>

> For us, the time-out chair works great.

>

> Take care everyone and thank you for listening.

>

> Dave

>

> oh, I forgot to mention the OCD behavior, fixating on comfort items,

> etc.

>

> Not just blankets, but horses, pearls, whatever. One of the things

> they (books, experts) tell you is that kids with AS will fixate on

> comfort items and carry small items with them.

>

> To adapt to this behavior we have just purchased several of the

> exact same comfort item.

>

> There was a tiny baby bottle that she took from a craft item at my

> MIL's house. She would ask for it every morning and a tantrum would

> ensue until it was found, well I went to 's and bought a pack

> of 200 for her for $2.00 so that would not happen.

>

> Does anyone else have similar issues? Please share

>

February 16, 2007

Hi, ,

I can identify with so much of your message. My

daughter, Gracie is 3.6 years old and is being

evaluated over this month and part of next for ASD. So

far, the doc has seen anxiety, some OCD, and some

autistic traits. She will meet with three other

professionals before she receives a dx, if any.

Yes, family didn't want to hear that something was

different even though they saw her legendary tantrums

and very strange behavior with not wanting to put on

swimsuits and pitching huge tantrums over them when we

all vacationed together last summer despite liking to

swim! (boy, I cried a lot on that vacation!!). Our

daughter also used to carry around very strange

objects but has pretty much quit that... she still

does not play with toys normally though. She colors

mostly or draws. And her speech is mixed up since age

2.5... reversing pronouns, not able to carry on a

conversation like your daughter, etc. DD also has

extreme tantrums over clothing, so for now, we are

letting her wear lots of dresses and tights since she

hates socks, etc... the fights are just so draining.

Best with everything... sounds like your daughter is

progressing and getting some help. I look forward to

getting those things in the next couple months.

________________________________________________________________________________\

____

Bored stiff? Loosen up...

Download and play hundreds of games for free on Games.

http://games./games/front

February 16, 2007

My daughter is 17 (18) next month and is fixated on Yu-Gi-Oh the tv show and

anything to do with that Anime Cartoon.

Carolyn

( ) Re: Our story

Ian, who's 15, has always liked to hold soft, round things. He's also fixated

on Kirby and

Pokemon video games--both of which have cute little round characters. Ian

carries a

stuffed Pokemon character around with him sometimes and plays with it. I try to

limit him

doing that in public--although I did let him take it to his social skills group

just so his

therapist could see what I was talking about. It's disturbing when a teenage

boy is still

playing with cute little stuffed toys, but I try to think of it in terms of the

fact that he's

emotionally and behaviorally delayed--and not ready to be as grown up as he is

chronologically. At the same time, I've started working him through Roxanna's

list of

independent living skills. You really wonder where this is all going sometimes,

you know?

Sue C.

>

> I haven't posted for a while, so just wanted to share and update

> everyone.

>

> When our daughter Lydia was one and a half, I knew that something

> was different about her, but didn't know what it was. Being a

> nurse, you think I should have known, but didn't.

>

> My wife, in-laws, parents, just thought i was over-reacting and told

> us to wait. I thought, wait for what, for her to be 5 yrs old and

> that much further behind. I got her speech tested at two years of

> age and before I did that, I fought with the pediatrician to get a

> hearing test, etc.

>

> At two, they said that there was nothing wrong, but her speech was

> just at the low end of normal, i.e., she is ok, just wait. Again,

> wait for what?

>

> I took her back at 3 yrs of age and low and behold she was evaluated

> as having expressive and receptive language problems. At that time,

> I had no idea she may have Aspergers as well.

>

> When they told me that she was eligible for speech therapy through

> the school and that it was 4 times per week, I was ecstatic that

> someone was finally willing to help!!

>

> As the therapy continued, we noticed that the behavior, tantrums,

> head-banging had still not improved, so the school evaluated her for

> Aspergers and she was diagnosed a few weeks ago.

>

> It has been heart-breaking, but also a blessing that we now know

> what we are dealing with and can help her.

>

> I can't tell you the number of relatives who have criticized our

> parenting style and said that we are too permissive, she just needs

> to be beat, she's spoiled, etc. Those people are no longer in our

> life, because I feel that they are not a positive influence on my

> child's life. You know who you can really stick with and count on

> when things get tough and the people that are too busy, too

> impatient to deal with things are the ones that run when the fire

> gets hot.

>

> So, now at 3 and a half she is doing much better. Her speech has

> improved greatly, she can communicate with us somewhat and make her

> needs known, but still can't have a conversation, i.e. we can't ask

> her what she did today and have her tell us, but that will come with

> time.

>

> I know that my child is only 3 and a half, but I can't express the

> need to get help as soon as possible and continue to fight the

> system. If you can't help your child, then who will?

>

> My wife wasn't completely supportive at first, but is now.

>

> Also, the best way to deal with the tantrums, delays, anger and just

> outright rage is patience, patience, patience, and a lot of love.

> YOu still have to set boundaries, but be patient.

>

> For us, the time-out chair works great.

>

> Take care everyone and thank you for listening.

>

> Dave

>

> oh, I forgot to mention the OCD behavior, fixating on comfort items,

> etc.

>

> Not just blankets, but horses, pearls, whatever. One of the things

> they (books, experts) tell you is that kids with AS will fixate on

> comfort items and carry small items with them.

>

> To adapt to this behavior we have just purchased several of the

> exact same comfort item.

>

> There was a tiny baby bottle that she took from a craft item at my

> MIL's house. She would ask for it every morning and a tantrum would

> ensue until it was found, well I went to 's and bought a pack

> of 200 for her for $2.00 so that would not happen.

>

> Does anyone else have similar issues? Please share

>

February 16, 2007

& - I hear ya'!

DO NOT let them know that there is more then 1 monkey. I speak from

personal experience. (AS) and (ADD) (twins - 3-1/2)

both had the same stuffed pig in their NICU incubators from day 1.

eventually comandeered both of those, then I wised up and

bought 2 more " collectible " stuffed pigs, until I had a set of 4

that could be swapped. They found them all. Then as a part of

his heavy work therapy, to ease transitions, he started carrying a

plastic basket, all 4 pigs went into the basket. The basket went

everywhere. Even to bed (to ease getting up the stairs). Stuff

went into the basket and seemed to never get out. was soon

carrying around armloads of stuff, including all 4 pigs. And he had

to have all 4. He slept with them in a litter under his belly.

Then we lost 1. You have no idea how we tore our world apart to

find that pig. I also went back to the source and tried to no avail

to get a few more. Wouldn't you know that there were no more in the

continental US available? 6 weeks later it showed up on the lecturn

at church, because the pastor knew he had seen it somewhere and knew

it was important, but couldn't remember who needed it. It was the

toughest 6 weeks of our life. I have since hidden 2 away and we

seem to be down to sleeping with just the 2 pigs, and 2 wolves

(mommy & daddy barky) and a small sheepdog (baby barky). (and a

small mini cooper, a flash light and a space shuttle) (and a

blanket, plastic hanger, and small curious george doll) (I am not

kidding - don't laugh, you all know exactly what I am talking about!)

So moral of the story - wise to have multiple transitional objects,

but unwise to make it known.

Gwen

>

> Hi

> My dd is also 3.5 yo and dx AS this past May!

>

> Your history sounds similar.

>

> >>>clip>>>

> oh, I forgot to mention the OCD behavior, fixating on comfort

items,

> etc.

>

> Not just blankets, but horses, pearls, whatever. One of the things

> they (books, experts) tell you is that kids with AS will fixate on

> comfort items and carry small items with them.

> >>>>

>

> I can totally relate. My ds had comfort items and we ran into the

problem of not being able to replace them when they were worn out.

So with a as soon as I saw a comfort item that I knew was here

to stay (her bear blanket...little bear head on a little blanket) I

found 2 more and started rotating them, for washing and such and to

make sure they wear evenly :-)

>

> She then added a monkey (for a while her nick name was chunky

monkey...not anymore) it is a TY brand monkey so I had to order 2

more " collector " ones off e-bay....at a hefty price but well worth

it.

>

> I don't think she knows there are 3 sets. But we cant do or go

any where without them. She holds bear right up by her lips and

kindof suckles with her mouth shut...oh and she has to " fix " bears

ears just " so " ...so that it hits her nose right...oh well it works

and just last week she verbalized that " bear helps me when I am

scared or hurt or feel bad " It was an awesome moment!

>

> a does like to have small items in her hands, she would always

hold 2-3 items (balls ect) in her hands while crawling.

>

> Never knew the comfort thing...fixating on the item was an AS

thing...interesting :-)

>

> Oh yeah...2 months before she was DX AS the CDSA (state EI) spent

an hour telling us why she wasn't AS...but said they would DX

OCD...Whatever...we went to a developmental Pediatrician and he DX

AS! But I hear ya on the OCD stuff!

>

> - C.

> Mom to Cassie 15 PCOS, Austin 13 ADHD and a 3 HFA/AS & SPD/SID

>

> ( ) Our story

>

> I haven't posted for a while, so just wanted to share and update

> everyone.

>

> When our daughter Lydia was one and a half, I knew that

something

> was different about her, but didn't know what it was. Being a

> nurse, you think I should have known, but didn't.

>

> My wife, in-laws, parents, just thought i was over-reacting and

told

> us to wait. I thought, wait for what, for her to be 5 yrs old

and

> that much further behind. I got her speech tested at two years

of

> age and before I did that, I fought with the pediatrician to get

a

> hearing test, etc.

>

> At two, they said that there was nothing wrong, but her speech

was

> just at the low end of normal, i.e., she is ok, just wait.

Again,

> wait for what?

>

> I took her back at 3 yrs of age and low and behold she was

evaluated

> as having expressive and receptive language problems. At that

time,

> I had no idea she may have Aspergers as well.

>

> When they told me that she was eligible for speech therapy

through

> the school and that it was 4 times per week, I was ecstatic that

> someone was finally willing to help!!

>

> As the therapy continued, we noticed that the behavior,

tantrums,

> head-banging had still not improved, so the school evaluated her

for

> Aspergers and she was diagnosed a few weeks ago.

>

> It has been heart-breaking, but also a blessing that we now know

> what we are dealing with and can help her.

>

> I can't tell you the number of relatives who have criticized our

> parenting style and said that we are too permissive, she just

needs

> to be beat, she's spoiled, etc. Those people are no longer in

our

> life, because I feel that they are not a positive influence on

my

> child's life. You know who you can really stick with and count

on

> when things get tough and the people that are too busy, too

> impatient to deal with things are the ones that run when the

fire

> gets hot.

>

> So, now at 3 and a half she is doing much better. Her speech has

> improved greatly, she can communicate with us somewhat and make

her

> needs known, but still can't have a conversation, i.e. we can't

ask

> her what she did today and have her tell us, but that will come

with

> time.

>

> I know that my child is only 3 and a half, but I can't express

the

> need to get help as soon as possible and continue to fight the

> system. If you can't help your child, then who will?

>

> My wife wasn't completely supportive at first, but is now.

>

> Also, the best way to deal with the tantrums, delays, anger and

just

> outright rage is patience, patience, patience, and a lot of

love.

> YOu still have to set boundaries, but be patient.

>

> For us, the time-out chair works great.

>

> Take care everyone and thank you for listening.

>

> Dave

>

> oh, I forgot to mention the OCD behavior, fixating on comfort

items,

> etc.

>

> Not just blankets, but horses, pearls, whatever. One of the

things

> they (books, experts) tell you is that kids with AS will fixate

on

> comfort items and carry small items with them.

>

> To adapt to this behavior we have just purchased several of the

> exact same comfort item.

>

> There was a tiny baby bottle that she took from a craft item at

my

> MIL's house. She would ask for it every morning and a tantrum

would

> ensue until it was found, well I went to 's and bought a

pack

> of 200 for her for $2.00 so that would not happen.

>

> Does anyone else have similar issues? Please share

>

February 16, 2007

I'm really impressed that you wouldn't give up until you found what was wrong

with your daughter. Way to go! As far as our so called friends & a few of the

relatives that thought our Grandson were just bad .. they took off too. Hey who

needs them. We have had custody of our Grandson, for the past 10yr he is

now 14yrs old. If he was living with his mom or dad God knows were he'd be now.

He was Dx'd around 8- 9 yrs old with Asperger/Bipolar/OCD/Chronic Motor Tic

Disorder & they thought he was just bad.

Take care,Betty

<droehl1234@...> wrote:

I haven't posted for a while, so just wanted to share and update

everyone.

When our daughter Lydia was one and a half, I knew that something

was different about her, but didn't know what it was. Being a

nurse, you think I should have known, but didn't.

My wife, in-laws, parents, just thought i was over-reacting and told

us to wait. I thought, wait for what, for her to be 5 yrs old and

that much further behind. I got her speech tested at two years of

age and before I did that, I fought with the pediatrician to get a

hearing test, etc.

At two, they said that there was nothing wrong, but her speech was

just at the low end of normal, i.e., she is ok, just wait. Again,

wait for what?

I took her back at 3 yrs of age and low and behold she was evaluated

as having expressive and receptive language problems. At that time,

I had no idea she may have Aspergers as well.

When they told me that she was eligible for speech therapy through

the school and that it was 4 times per week, I was ecstatic that

someone was finally willing to help!!

As the therapy continued, we noticed that the behavior, tantrums,

head-banging had still not improved, so the school evaluated her for

Aspergers and she was diagnosed a few weeks ago.

It has been heart-breaking, but also a blessing that we now know

what we are dealing with and can help her.

I can't tell you the number of relatives who have criticized our

parenting style and said that we are too permissive, she just needs

to be beat, she's spoiled, etc. Those people are no longer in our

life, because I feel that they are not a positive influence on my

child's life. You know who you can really stick with and count on

when things get tough and the people that are too busy, too

impatient to deal with things are the ones that run when the fire

gets hot.

So, now at 3 and a half she is doing much better. Her speech has

improved greatly, she can communicate with us somewhat and make her

needs known, but still can't have a conversation, i.e. we can't ask

her what she did today and have her tell us, but that will come with

time.

I know that my child is only 3 and a half, but I can't express the

need to get help as soon as possible and continue to fight the

system. If you can't help your child, then who will?

My wife wasn't completely supportive at first, but is now.

Also, the best way to deal with the tantrums, delays, anger and just

outright rage is patience, patience, patience, and a lot of love.

YOu still have to set boundaries, but be patient.

For us, the time-out chair works great.

Take care everyone and thank you for listening.

Dave

oh, I forgot to mention the OCD behavior, fixating on comfort items,

etc.

Not just blankets, but horses, pearls, whatever. One of the things

they (books, experts) tell you is that kids with AS will fixate on

comfort items and carry small items with them.

To adapt to this behavior we have just purchased several of the

exact same comfort item.

There was a tiny baby bottle that she took from a craft item at my

MIL's house. She would ask for it every morning and a tantrum would

ensue until it was found, well I went to 's and bought a pack

of 200 for her for $2.00 so that would not happen.

Does anyone else have similar issues? Please share

---------------------------------

TV dinner still cooling?

Check out " Tonight's Picks " on TV.

February 16, 2007

Wow...I will be more careful, so she doesn't find out! Besides Bear and Mi-Mi

(the monkey) she has Princess Bear, Reindeer, Snowman, Eddie the Sea Turtle and

Big Dora that sleep in bed with her! Just a couple weeks ago we started the new

rule that only 2 animals (she calls them her friends) can come out of her room

with her. So far the rule is working :-)

- C.

Mom to Cassie 15 PCOS, Austin 13 ADHD and a 3 HFA/AS & SPD/SID

( ) Our story

>

> I haven't posted for a while, so just wanted to share and update

> everyone.

>

> When our daughter Lydia was one and a half, I knew that

something

> was different about her, but didn't know what it was. Being a

> nurse, you think I should have known, but didn't.

>

> My wife, in-laws, parents, just thought i was over-reacting and

told

> us to wait. I thought, wait for what, for her to be 5 yrs old

and

> that much further behind. I got her speech tested at two years

of

> age and before I did that, I fought with the pediatrician to get

a

> hearing test, etc.

>

> At two, they said that there was nothing wrong, but her speech

was

> just at the low end of normal, i.e., she is ok, just wait.

Again,

> wait for what?

>

> I took her back at 3 yrs of age and low and behold she was

evaluated

> as having expressive and receptive language problems. At that

time,

> I had no idea she may have Aspergers as well.

>

> When they told me that she was eligible for speech therapy

through

> the school and that it was 4 times per week, I was ecstatic that

> someone was finally willing to help!!

>

> As the therapy continued, we noticed that the behavior,

tantrums,

> head-banging had still not improved, so the school evaluated her

for

> Aspergers and she was diagnosed a few weeks ago.

>

> It has been heart-breaking, but also a blessing that we now know

> what we are dealing with and can help her.

>

> I can't tell you the number of relatives who have criticized our

> parenting style and said that we are too permissive, she just

needs

> to be beat, she's spoiled, etc. Those people are no longer in

our

> life, because I feel that they are not a positive influence on

my

> child's life. You know who you can really stick with and count

on

> when things get tough and the people that are too busy, too

> impatient to deal with things are the ones that run when the

fire

> gets hot.

>

> So, now at 3 and a half she is doing much better. Her speech has

> improved greatly, she can communicate with us somewhat and make

her

> needs known, but still can't have a conversation, i.e. we can't

ask

> her what she did today and have her tell us, but that will come

with

> time.

>

> I know that my child is only 3 and a half, but I can't express

the

> need to get help as soon as possible and continue to fight the

> system. If you can't help your child, then who will?

>

> My wife wasn't completely supportive at first, but is now.

>

> Also, the best way to deal with the tantrums, delays, anger and

just

> outright rage is patience, patience, patience, and a lot of

love.

> YOu still have to set boundaries, but be patient.

>

> For us, the time-out chair works great.

>

> Take care everyone and thank you for listening.

>

> Dave

>

> oh, I forgot to mention the OCD behavior, fixating on comfort

items,

> etc.

>

> Not just blankets, but horses, pearls, whatever. One of the

things

> they (books, experts) tell you is that kids with AS will fixate

on

> comfort items and carry small items with them.

>

> To adapt to this behavior we have just purchased several of the

> exact same comfort item.

>

> There was a tiny baby bottle that she took from a craft item at

my

> MIL's house. She would ask for it every morning and a tantrum

would

> ensue until it was found, well I went to 's and bought a

pack

> of 200 for her for $2.00 so that would not happen.

>

> Does anyone else have similar issues? Please share

>

February 23, 2007

Mack, who's 14, likes stuffed animals, as well. I did manage to get him to stop

carrying them in public. He is fixated on Pokemon and Kirby video games, too.

He is also fixated on Bionicles. I have had more trouble getting him to stop

carrying those in public. I have used a social story with him to try and help

him understand that if NT kids from school see him with these toys in a store

then they will probably make fun of him, then he may go into a rage, and the

consequences will not be good. We have to review this everytime we go

somewhere. It works when we are close to home, but he can not process that his

peers from school might be at the mall 10 miles away or the stores near his

grandmother's house because he has never seen them there. But we live in a

rural area and this mall and stores near his grandmother's house are the closest

for everyone in our community. Most of the time he gets very angry with me for

bringing up the subject and not letting him carry what he wants. He sees me as

the enemy and " picky " instead of as the person who is trying to protect him. I

am his stepmom and he lives with his dad and I. It does not help that his

adoptive mom (my husband's ex) tells him that it is okay to be " unique. " I

agree that he should be allowed to be himself, but I also know that he cannot

handle the teasing that may follow. His Momma lets him wear what he wants,

carry what he wants, and hug all over her like he is still a preschooler even in

public. She has no limits and boundaries for him which makes things even more

difficult. If he does chores at her house, she tells him how wonderful he is no

matter how poorly he does things. She never reminds him to use soap or shampoo

or deoderant. So when he comes back home to us, we become the " picky " parents.

I'm sure that he hears those words from his Momma, too. He is constantly

telling us, therapists, psychiatrists that " Momma and I have a bond that is so

strong that it cannot be broken and no one else has that kind of bond with us. "

This is despite the fact that his Momma left him and his dad when Mack was 7 and

moved to England to be with a man that she met on the internet. That lasted

about a year and then she was back in the US and has been inconsistently in his

life since. He never knows when she is going to call and many times does not

show up for visits, etc. It has been noted in more than one report from

professionals that his comment he makes seems to be " coached " and that he cannot

explain what he means by the comment.

I, too, have to constantly remind myself that his developmental level is far

below his age. Currently, Mack is in a residential treatment facility due to

his agressive behaviors to us, teachers, and the police. I think that much of

his anger is due to his confusion about life. We just got the diagnosis of

Aspergers a month ago. Until that time we were being told that ADHD and Bipolar

were the issues and therefore he was expected to learn behaviors that he was not

capable of learning in the way that he was being taught. I kept fighting for

the Asperger or PDD diagnosis because the other diagnosis just did not explain

everything. Now I hope that we can undo the damage of not having a correct

diagnosis. Most of all I hope that the time away will give me time to regroup,

research strategies, and destress so that my irritability will be lower and my

frustration threshold will be higher when he returns home. I also hope that I

can deal with the guilt for the times that I have been so angry with him. I am

a veteran special ed teacher and I knew that more was wrong and I knew that I

needed to be patient, but I was trying to use the strategies I was told to use

and bury my concerns and reservations about their effectiveness. All of this

lead to alot of frustration and anger on my part.

Donna

( ) Re: Our story

Ian, who's 15, has always liked to hold soft, round things. He's also fixated

on Kirby and

Pokemon video games--both of which have cute little round characters. Ian

carries a

stuffed Pokemon character around with him sometimes and plays with it. I try

to limit him

doing that in public--although I did let him take it to his social skills

group just so his

therapist could see what I was talking about. It's disturbing when a teenage

boy is still

playing with cute little stuffed toys, but I try to think of it in terms of

the fact that he's

emotionally and behaviorally delayed--and not ready to be as grown up as he is

chronologically. At the same time, I've started working him through Roxanna's

list of

independent living skills. You really wonder where this is all going

sometimes, you know?

Sue C.

>

> I haven't posted for a while, so just wanted to share and update

> everyone.

>

> When our daughter Lydia was one and a half, I knew that something

> was different about her, but didn't know what it was. Being a

> nurse, you think I should have known, but didn't.

>

> My wife, in-laws, parents, just thought i was over-reacting and told

> us to wait. I thought, wait for what, for her to be 5 yrs old and

> that much further behind. I got her speech tested at two years of

> age and before I did that, I fought with the pediatrician to get a

> hearing test, etc.

>

> At two, they said that there was nothing wrong, but her speech was

> just at the low end of normal, i.e., she is ok, just wait. Again,

> wait for what?

>

> I took her back at 3 yrs of age and low and behold she was evaluated

> as having expressive and receptive language problems. At that time,

> I had no idea she may have Aspergers as well.

>

> When they told me that she was eligible for speech therapy through

> the school and that it was 4 times per week, I was ecstatic that

> someone was finally willing to help!!

>

> As the therapy continued, we noticed that the behavior, tantrums,

> head-banging had still not improved, so the school evaluated her for

> Aspergers and she was diagnosed a few weeks ago.

>

> It has been heart-breaking, but also a blessing that we now know

> what we are dealing with and can help her.

>

> I can't tell you the number of relatives who have criticized our

> parenting style and said that we are too permissive, she just needs

> to be beat, she's spoiled, etc. Those people are no longer in our

> life, because I feel that they are not a positive influence on my

> child's life. You know who you can really stick with and count on

> when things get tough and the people that are too busy, too

> impatient to deal with things are the ones that run when the fire

> gets hot.

>

> So, now at 3 and a half she is doing much better. Her speech has

> improved greatly, she can communicate with us somewhat and make her

> needs known, but still can't have a conversation, i.e. we can't ask

> her what she did today and have her tell us, but that will come with

> time.

>

> I know that my child is only 3 and a half, but I can't express the

> need to get help as soon as possible and continue to fight the

> system. If you can't help your child, then who will?

>

> My wife wasn't completely supportive at first, but is now.

>

> Also, the best way to deal with the tantrums, delays, anger and just

> outright rage is patience, patience, patience, and a lot of love.

> YOu still have to set boundaries, but be patient.

>

> For us, the time-out chair works great.

>

> Take care everyone and thank you for listening.

>

> Dave

>

> oh, I forgot to mention the OCD behavior, fixating on comfort items,

> etc.

>

> Not just blankets, but horses, pearls, whatever. One of the things

> they (books, experts) tell you is that kids with AS will fixate on

> comfort items and carry small items with them.

>

> To adapt to this behavior we have just purchased several of the

> exact same comfort item.

>

> There was a tiny baby bottle that she took from a craft item at my

> MIL's house. She would ask for it every morning and a tantrum would

> ensue until it was found, well I went to 's and bought a pack

> of 200 for her for $2.00 so that would not happen.

>

> Does anyone else have similar issues? Please share

>

------------------------------------------------------------------------------

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.5.441 / Virus Database: 268.17.39/685 - Release Date: 2/13/2007

10:01 PM

February 23, 2007

Donna,

You are awesome! Mack is really lucky to have you in his life. He may not

act like it now, but I bet when he's older you'll see from him how much he

appreciates your help. Your husband is also really lucky to have you too!

Liz

Houston

Donna <donnalmoore@...> wrote:

Mack, who's 14, likes stuffed animals, as well. I did manage to get

him to stop carrying them in public. He is fixated on Pokemon and Kirby video

games, too. He is also fixated on Bionicles. I have had more trouble getting him

to stop carrying those in public. I have used a social story with him to try and

help him understand that if NT kids from school see him with these toys in a

store then they will probably make fun of him, then he may go into a rage, and

the consequences will not be good. We have to review this everytime we go

somewhere. It works when we are close to home, but he can not process that his

peers from school might be at the mall 10 miles away or the stores near his

grandmother's house because he has never seen them there. But we live in a rural

area and this mall and stores near his grandmother's house are the closest for

everyone in our community. Most of the time he gets very angry with me for

bringing up the subject and not letting him carry

what he wants. He sees me as the enemy and " picky " instead of as the person who

is trying to protect him. I am his stepmom and he lives with his dad and I. It

does not help that his adoptive mom (my husband's ex) tells him that it is okay

to be " unique. " I agree that he should be allowed to be himself, but I also know

that he cannot handle the teasing that may follow. His Momma lets him wear what

he wants, carry what he wants, and hug all over her like he is still a

preschooler even in public. She has no limits and boundaries for him which makes

things even more difficult. If he does chores at her house, she tells him how

wonderful he is no matter how poorly he does things. She never reminds him to

use soap or shampoo or deoderant. So when he comes back home to us, we become

the " picky " parents. I'm sure that he hears those words from his Momma, too. He

is constantly telling us, therapists, psychiatrists that " Momma and I have a

bond that is so strong that it cannot be

broken and no one else has that kind of bond with us. " This is despite the fact

that his Momma left him and his dad when Mack was 7 and moved to England to be

with a man that she met on the internet. That lasted about a year and then she

was back in the US and has been inconsistently in his life since. He never knows

when she is going to call and many times does not show up for visits, etc. It

has been noted in more than one report from professionals that his comment he

makes seems to be " coached " and that he cannot explain what he means by the

comment.

I, too, have to constantly remind myself that his developmental level is far

below his age. Currently, Mack is in a residential treatment facility due to his

agressive behaviors to us, teachers, and the police. I think that much of his

anger is due to his confusion about life. We just got the diagnosis of Aspergers

a month ago. Until that time we were being told that ADHD and Bipolar were the

issues and therefore he was expected to learn behaviors that he was not capable

of learning in the way that he was being taught. I kept fighting for the

Asperger or PDD diagnosis because the other diagnosis just did not explain

everything. Now I hope that we can undo the damage of not having a correct

diagnosis. Most of all I hope that the time away will give me time to regroup,

research strategies, and destress so that my irritability will be lower and my

frustration threshold will be higher when he returns home. I also hope that I

can deal with the guilt for the times that I have

been so angry with him. I am a veteran special ed teacher and I knew that more

was wrong and I knew that I needed to be patient, but I was trying to use the

strategies I was told to use and bury my concerns and reservations about their

effectiveness. All of this lead to alot of frustration and anger on my part.

Donna

( ) Re: Our story

Ian, who's 15, has always liked to hold soft, round things. He's also fixated on

Kirby and

Pokemon video games--both of which have cute little round characters. Ian

carries a

stuffed Pokemon character around with him sometimes and plays with it. I try to

limit him

doing that in public--although I did let him take it to his social skills group

just so his

therapist could see what I was talking about. It's disturbing when a teenage boy

is still

playing with cute little stuffed toys, but I try to think of it in terms of the

fact that he's

emotionally and behaviorally delayed--and not ready to be as grown up as he is

chronologically. At the same time, I've started working him through Roxanna's

list of

independent living skills. You really wonder where this is all going sometimes,

you know?

Sue C.

>

> I haven't posted for a while, so just wanted to share and update

> everyone.

>

> When our daughter Lydia was one and a half, I knew that something

> was different about her, but didn't know what it was. Being a

> nurse, you think I should have known, but didn't.

>

> My wife, in-laws, parents, just thought i was over-reacting and told

> us to wait. I thought, wait for what, for her to be 5 yrs old and

> that much further behind. I got her speech tested at two years of

> age and before I did that, I fought with the pediatrician to get a

> hearing test, etc.

>

> At two, they said that there was nothing wrong, but her speech was

> just at the low end of normal, i.e., she is ok, just wait. Again,

> wait for what?

>

> I took her back at 3 yrs of age and low and behold she was evaluated

> as having expressive and receptive language problems. At that time,

> I had no idea she may have Aspergers as well.

>

> When they told me that she was eligible for speech therapy through

> the school and that it was 4 times per week, I was ecstatic that

> someone was finally willing to help!!

>

> As the therapy continued, we noticed that the behavior, tantrums,

> head-banging had still not improved, so the school evaluated her for

> Aspergers and she was diagnosed a few weeks ago.

>

> It has been heart-breaking, but also a blessing that we now know

> what we are dealing with and can help her.

>

> I can't tell you the number of relatives who have criticized our

> parenting style and said that we are too permissive, she just needs

> to be beat, she's spoiled, etc. Those people are no longer in our

> life, because I feel that they are not a positive influence on my

> child's life. You know who you can really stick with and count on

> when things get tough and the people that are too busy, too

> impatient to deal with things are the ones that run when the fire

> gets hot.

>

> So, now at 3 and a half she is doing much better. Her speech has

> improved greatly, she can communicate with us somewhat and make her

> needs known, but still can't have a conversation, i.e. we can't ask

> her what she did today and have her tell us, but that will come with

> time.

>

> I know that my child is only 3 and a half, but I can't express the

> need to get help as soon as possible and continue to fight the

> system. If you can't help your child, then who will?

>

> My wife wasn't completely supportive at first, but is now.

>

> Also, the best way to deal with the tantrums, delays, anger and just

> outright rage is patience, patience, patience, and a lot of love.

> YOu still have to set boundaries, but be patient.

>

> For us, the time-out chair works great.

>

> Take care everyone and thank you for listening.

>

> Dave

>

> oh, I forgot to mention the OCD behavior, fixating on comfort items,

> etc.

>

> Not just blankets, but horses, pearls, whatever. One of the things

> they (books, experts) tell you is that kids with AS will fixate on

> comfort items and carry small items with them.

>

> To adapt to this behavior we have just purchased several of the

> exact same comfort item.

>

> There was a tiny baby bottle that she took from a craft item at my

> MIL's house. She would ask for it every morning and a tantrum would

> ensue until it was found, well I went to 's and bought a pack

> of 200 for her for $2.00 so that would not happen.

>

> Does anyone else have similar issues? Please share

>

----------------------------------------------------------

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.5.441 / Virus Database: 268.17.39/685 - Release Date: 2/13/2007 10:01

PM

February 23, 2007

Just wanted to sent you a hug....

Donna <donnalmoore@...> wrote: Mack, who's 14, likes stuffed

animals, as well. I did manage to get him to stop carrying them in public. He is

fixated on Pokemon and Kirby video games, too. He is also fixated on Bionicles.

I have had more trouble getting him to stop carrying those in public. I have

used a social story with him to try and help him understand that if NT kids from

school see him with these toys in a store then they will probably make fun of

him, then he may go into a rage, and the consequences will not be good. We have

to review this everytime we go somewhere. It works when we are close to home,

but he can not process that his peers from school might be at the mall 10 miles

away or the stores near his grandmother's house because he has never seen them

there. But we live in a rural area and this mall and stores near his

grandmother's house are the closest for everyone in our community. Most of the

time he gets very angry with me for bringing

up the subject and not letting him carry what he wants. He sees me as the enemy

and " picky " instead of as the person who is trying to protect him. I am his

stepmom and he lives with his dad and I. It does not help that his adoptive mom

(my husband's ex) tells him that it is okay to be " unique. " I agree that he

should be allowed to be himself, but I also know that he cannot handle the

teasing that may follow. His Momma lets him wear what he wants, carry what he

wants, and hug all over her like he is still a preschooler even in public. She

has no limits and boundaries for him which makes things even more difficult. If

he does chores at her house, she tells him how wonderful he is no matter how

poorly he does things. She never reminds him to use soap or shampoo or

deoderant. So when he comes back home to us, we become the " picky " parents. I'm

sure that he hears those words from his Momma, too. He is constantly telling us,

therapists, psychiatrists that " Momma and I have a

bond that is so strong that it cannot be broken and no one else has that kind

of bond with us. " This is despite the fact that his Momma left him and his dad

when Mack was 7 and moved to England to be with a man that she met on the

internet. That lasted about a year and then she was back in the US and has been

inconsistently in his life since. He never knows when she is going to call and

many times does not show up for visits, etc. It has been noted in more than one

report from professionals that his comment he makes seems to be " coached " and

that he cannot explain what he means by the comment.