Re: a very long plea for help

[Guest guest]

I do this also.I will take his snacks/juice with me in my purse in we go to the

dr or something like that or on our way in the car.I also have a video now jr.

that he loves and can operate on his own(has Barney,wiggles,blues clues

disks)and we take it EVERYWHERE.My son would have rages in the car and literally

be coming out of his seat trying to get to me to scratch me.I've had to pull

over so many times or hurry up and get home.It was out of control.Books too,so

he can redirect his attention.

Stacey

From: pkuenstler@...

Date: 2006/08/03 Thu AM 09:10:23 CDT

autism

Subject: Re: A very long plea for help

I don't know if anything I have to say will be useful to you, but here are some

of the things I have done with Karac.  I tell him to go to his room and get his

blanket when I think he is going to be aggressive; I also have an old wool coat

and some mittens that look like boxing gloves that I put on when I think he is

going to be aggressive and he seems to be conditioned to calm down when he sees

me with these on.  I also keep his favorite candy in my pockets at all time that

I reward him for good behavior when I see that he is just beginning to get at

the end of his self control.  I also keep a CD player in my purse that I will

give him in a situation like eating out.  I also take some of his favorite foods

like an apple to give him to eat at the restaurant while we are waiting for the

food.  I have also taken colors and colorbooks for him if needed.  Karac is now

13 and I can take him to church, to the grocery store and to eat out, but it has

taken years of working at it.  Pat K

[Guest guest]

I do this also.I will take his snacks/juice with me in my purse in we go to the

dr or something like that or on our way in the car.I also have a video now jr.

that he loves and can operate on his own(has Barney,wiggles,blues clues

disks)and we take it EVERYWHERE.My son would have rages in the car and literally

be coming out of his seat trying to get to me to scratch me.I've had to pull

over so many times or hurry up and get home.It was out of control.Books too,so

he can redirect his attention.

Stacey

From: pkuenstler@...

Date: 2006/08/03 Thu AM 09:10:23 CDT

autism

Subject: Re: A very long plea for help

I don't know if anything I have to say will be useful to you, but here are some

of the things I have done with Karac.  I tell him to go to his room and get his

blanket when I think he is going to be aggressive; I also have an old wool coat

and some mittens that look like boxing gloves that I put on when I think he is

going to be aggressive and he seems to be conditioned to calm down when he sees

me with these on.  I also keep his favorite candy in my pockets at all time that

I reward him for good behavior when I see that he is just beginning to get at

the end of his self control.  I also keep a CD player in my purse that I will

give him in a situation like eating out.  I also take some of his favorite foods

like an apple to give him to eat at the restaurant while we are waiting for the

food.  I have also taken colors and colorbooks for him if needed.  Karac is now

13 and I can take him to church, to the grocery store and to eat out, but it has

taken years of working at it.  Pat K

[Guest guest]

Yes, Stacey, I have had those same experiences in the car, but not in the last couple of years. It is so scary! I think the last time was two years ago ; he attacked me in the car at the Jack in the Box when his sandwich didn't come fast enough. The mananger came out and brought the sandwich and helped me. He stayed with me until Karac calmed down. I keep a half of crushed Clonidine in my purse for emergencies, and I put it in his water (which I keep in the car at all times). It calms him down in twenty minutes or less. Some people can be so kind and thoughtful. Pat K

[Guest guest]

Yes, Stacey, I have had those same experiences in the car, but not in the last couple of years. It is so scary! I think the last time was two years ago ; he attacked me in the car at the Jack in the Box when his sandwich didn't come fast enough. The mananger came out and brought the sandwich and helped me. He stayed with me until Karac calmed down. I keep a half of crushed Clonidine in my purse for emergencies, and I put it in his water (which I keep in the car at all times). It calms him down in twenty minutes or less. Some people can be so kind and thoughtful. Pat K

[Guest guest]

It's funny I didn't think of posting this before because I was

thinking of loud talking and not screaming or tantrums (which is what

we use this for). But since it's clear that the loud talking is

sometimes related to over-stimulation, this would probably work for

that as well.

We bought a little portable CD player with headphones. We also have

it in a little carrying case. We put Veggie Tales or old cowbody

tunes or Sheryl Crow in there and it settles him right down like NOW.

Whenever or son gets excited, the CD player helps to calm him down

almost 100% of the time. It helps him to block out all the sensory

things that seem to be overstimulating him.

We're also going to be giving this a try at school this year. We're

going to put in classic music that isn't very loud so that he can

still hear his teacher and we're hoping that this will help him stay

focused in the classroom.

So if your child is talking loudly and repetatively for long

durations, this might help.

Kat

[Guest guest]

It's funny I didn't think of posting this before because I was

thinking of loud talking and not screaming or tantrums (which is what

we use this for). But since it's clear that the loud talking is

sometimes related to over-stimulation, this would probably work for

that as well.

We bought a little portable CD player with headphones. We also have

it in a little carrying case. We put Veggie Tales or old cowbody

tunes or Sheryl Crow in there and it settles him right down like NOW.

Whenever or son gets excited, the CD player helps to calm him down

almost 100% of the time. It helps him to block out all the sensory

things that seem to be overstimulating him.

We're also going to be giving this a try at school this year. We're

going to put in classic music that isn't very loud so that he can

still hear his teacher and we're hoping that this will help him stay

focused in the classroom.

So if your child is talking loudly and repetatively for long

durations, this might help.

Kat

[Guest guest]

Oh, Kat, Karac's favorite CD is Sheryl Crow, and he has an autographed copy. I keep one of them going in the car all the time. It works great. Pat K

[Guest guest]

Oh, Kat, Karac's favorite CD is Sheryl Crow, and he has an autographed copy. I keep one of them going in the car all the time. It works great. Pat K

[Guest guest]

((((KELLY))))

I feel for you. Your son sounds exactly like my son except my son

doesn't have the verbal delays.

Are you getting any kind of services? If not I would suggest you get

him evaluated asap by a child psychologist, and preferably a

neurpsychologist that specializes in Aspergers and High Functioning

Autism.

I have not yet read the other posts in this thread because I am about

to doze off and wanted to at least write to you.

Please get and start reading, into between fits of rage,

hyperactivity and orneriness, these two books, Parenting your

Asperger child and The Oasis Guide to Asperger Syndrome. Since he

isn't officially dx'd yet I wouldn't buy them but I sure would go to

the library and get them.

As for the rages, at this point there is nothing you can do but keep

him safe and others around him safe. I have learned from experience

that the more you try to calm them down, intervene, they just get

more worked up.

What my son told me, screamed at me, in the middle of a rage one

night was, " MOM MY HEAD IS FULL, SHUT UP, I CAN'T TAKE ANYMORE

WORDS!!! " That was my eye opener. That's the way it happens, when

they are raging something is overloading their heads. And the more

you try and talk the worse it gets. That's why you notice he calms

down when he is ready.

He isn't doing any of this on purpose. I know how frustrating it is.

I think, and I am still trying to figure it out, the reason they act

like that with just us, or at home is because... we tell them what to

do. Clean the room, sit up straight, brush their teeth, eat their

dinner, behave, etc. See, it's us that overloads them anytime we

tell them to do something. Grammas and aunts they don't really. They

just have fun with them.

Same with school. My son is so well behaved in school I used to get

mad at him and say, " if you can sit still and listen at school, be

good for your teachers then why can't you be good for me? "

Well, it's because it is totally structured at school. Even though

the lessons are different everyday the same thing happens everyday.

Math first, language second, art third, you get my drift.

So, try as best you can to keep everything as structured as possible

at home. The other thing that helps my son a whole bunch is telling

him way in advance, as much as you can, when you are going to change

that structure, ie going out to dinner with Gramma. Tell him exactly

what is expected and what the consequences will be. Also, don't just

say it once. Repeat over and over.

For example. If you knew on Friday that you were going on Sunday you

would say, " we are going to go out to eat with Gramma on Sunday, I

expect you to behave and sit still and eat your dinner the right

way. If you do not we will get in the car and come home, you will

then get peanut butter and jelly for supper. "

You would repeat that over and over and over ALL DAY Saturday. And

in the car on the way to the restaurant. And yes I would take two

cars. Or give the consequence of what you did, taking him to the car

while everyone else ate.

I know this is long but my heart goes out to you. You can't give

normal consequences to an autistic child, meaning you are grounded if

you don't do this or that. Oh..it's so hard to explain. If you just

get the Parenting Your Asperger Child book you will understand so

MUCH MORE.

Good luck !!!

God Bless you and your family, it is rough

Kimmery

[Guest guest]

Wow,that is really something how we all have so many shared experiences.If it

weren't for places like this on the internet I would really feel even more alone

in my experiences.That was so kind of the manager to do that,most would not know

what to do let alone WANT to help.I'm so grateful when I have those little

" blessings " come our way!

Stacey

From: pkuenstler@...

Date: 2006/08/03 Thu PM 11:01:06 CDT

autism

Subject: Re: A very long plea for help

Yes, Stacey, I have had those same experiences in the car, but not in the last

couple of years.  It is so scary!  I think the last time was two years ago ; he

attacked me in the car at the Jack in the Box when his sandwich didn't come fast

enough.  The mananger came out and brought the sandwich and helped me. He stayed

with me until Karac calmed down. I keep a half of crushed Clonidine in my purse

for emergencies, and I put it in his water (which I keep in the car at all

times).  It calms him down in twenty minutes or less. Some people can be so kind

and thoughtful.  Pat K

[Guest guest]

Wow,that is really something how we all have so many shared experiences.If it

weren't for places like this on the internet I would really feel even more alone

in my experiences.That was so kind of the manager to do that,most would not know

what to do let alone WANT to help.I'm so grateful when I have those little

" blessings " come our way!

Stacey

From: pkuenstler@...

Date: 2006/08/03 Thu PM 11:01:06 CDT

autism

Subject: Re: A very long plea for help

Yes, Stacey, I have had those same experiences in the car, but not in the last

couple of years.  It is so scary!  I think the last time was two years ago ; he

attacked me in the car at the Jack in the Box when his sandwich didn't come fast

enough.  The mananger came out and brought the sandwich and helped me. He stayed

with me until Karac calmed down. I keep a half of crushed Clonidine in my purse

for emergencies, and I put it in his water (which I keep in the car at all

times).  It calms him down in twenty minutes or less. Some people can be so kind

and thoughtful.  Pat K

[Guest guest]

>

> is very strong and very strong willed seven year old with

> developmental delayes and wobbly gross motor. He is non verbal ans

> has a hard time mastering signs. Scary combo. Since cannot

> communicate well I can understand why he may behave frustrated

> like, But he is now way to difficult for me to handle. My

> daughter is ADHD so I know how one with ADHD acts, but of course

> also have developmental disabilities. His fit throwing has

> increased to the point now where I cannot redirect his energies at

> all. When he has his " fits of rage " for lack of better terms, he

> tries to hurt me or who ever is near by. Sometimes he doesn't even

> know the person they are just walking by at the wrong time. He

> grabs and throws what ever he can reach at that moment and does

not

> calm down until he is ready. I can not redirect his attention.

>

> He also has " fits of orneriness " . When he seems in a good mood

> but begins to pinch, pull hair, hit or has even been known to bite

> and scratch out of pure Orneriness. He thinks it is funny. There

> are times when he gets " out of control " hyper active. He spends

> sometimes an hour or more obsessively climbing on chairs, rolling

> around, trying to hang on me, throwing toys, trying to grab other

> things to throw, and sometimes shake his head no till he's dizzy.

> I have to let him wear down any kind of intervention seems to make

> him more intense or I end up getting hurt. One day when I was on

> the phone he was playing with sister (11) in the same room as I

was

> in, out of the blue he came up behind my chair, grabbed my hair

and

> pulled me down. I have no understanding why, except he may have

> been frustrated that sissy would take him outside to play.

>

> Meal times are very unhappy most of the time due to

> never wanting to sit down. Also he throws food and dumps his

drinks

> on purpose the tries to eat and drink our dinner. Reminds me of

> Helen Keller except I don't tolerate it. Although I do not know

how

> to really handle situations as this. We take his food away and

tell

> him he has to wait a while to eat. Then he still won't sit in the

> living room while we eat he tries to get into stuff to get my

> attention so I cannot enjoy my meal. Restaurants are a joke. My

> mom took my grandma, my daughter, and I to dinner a

Shari's

> last Saturday. After about 5 min he then started standing up on

the

> seat and I had a hard time getting him to sit down, then He kept

> trying to crawl out on the booth right over my lap. I took him

> outside for a walk until our food came and then we went back into

> eat. He would not sit down instead while I was trying to wrestle

> him to sit down he was intentionally trying to put his feet on the

> table to knock things over. I then told my mom to get my food to

go

> and bring it to the car where I put in his car seat, which

> is always a struggle, and he watched me eat. Then I fed him 30 min

> later.

>

> has also started to wander off, getting more brave and

> as the staple in his head will prove his behavior and I not

knowing

> how to handle it is getting us both hurt.

>

> I watched a video today called " Day By Day Raising the child with

> Autism/PDD by Joan F Goodman And Hoban. Although

does

> not have a diagnosis of Autism he has always exhibited some of the

> challenging behaviors and I have always figured what works for

> autism child is worth trying on any developmentally delayed child.

> Any way the girl in this video does everything like . To

the

> tee. never acted unaware of people when he was little and

> loves people, But he is non verbal and age 7 with a mentality in

> some thing of a 3 year old. Also he is like having terrible 2s

> times 10 right now. And transitions are horrible fits even getting

> out of the car it seems. Even though he barely focuses on an

> activity but bounces from one thing to another with no real intent

> It is still hard to get him to do something that is not his idea.

> It is true he act the worst with me his mother so no one believes

> the way he acts.

>

> If any one can offer advice on what I can do to try to cope with

> these very aggressive behaviors I would appreciate your comments.

>

> Thank you

>

>

>

[Guest guest]

Stacey, several weeks later when I pulled into that same Jack-in-the-Box, the man remembered us and asked how Karac had been doing? Needless to say he got our food ready very quickly. I have found there are many kind, helpful people when they understand. Recently I had to make an emergency trip to the pharmacy, and I had to take karac with me. The line was really long!! Karac does not do well in waiting!! There were some chairs to the side at the front of the line; so I had karac sit down. He is easier to control when he is sitting, and I told the lady at the end of the line to save that place for me, but that I would have to keep my eye on Karac; The lady who was next in line heard me and even though she was in a hurry, told me to go in front of her. Her kindness almost brought tears to my eyes. We were able to get out without an incident and I was most thankful. Pat K

[Guest guest]

Stacey, several weeks later when I pulled into that same Jack-in-the-Box, the man remembered us and asked how Karac had been doing? Needless to say he got our food ready very quickly. I have found there are many kind, helpful people when they understand. Recently I had to make an emergency trip to the pharmacy, and I had to take karac with me. The line was really long!! Karac does not do well in waiting!! There were some chairs to the side at the front of the line; so I had karac sit down. He is easier to control when he is sitting, and I told the lady at the end of the line to save that place for me, but that I would have to keep my eye on Karac; The lady who was next in line heard me and even though she was in a hurry, told me to go in front of her. Her kindness almost brought tears to my eyes. We were able to get out without an incident and I was most thankful. Pat K

[Guest guest]

Tammie, what an ordeal, but I am impressed with your ability to apply extinction to his food smashing behavior, and your success at getting to school to do it too. I have not always been able to get cooperation from the school. Karac is bigger than I am too, but so far, I haven't had to go to the hospital. These teen years are challenging even when they aren't autistic. My 17 year old granddaughter is living with us and sometimes I think she is more of a challenge than Karac. LOL, Pat K

[Guest guest]

Tammie, what an ordeal, but I am impressed with your ability to apply extinction to his food smashing behavior, and your success at getting to school to do it too. I have not always been able to get cooperation from the school. Karac is bigger than I am too, but so far, I haven't had to go to the hospital. These teen years are challenging even when they aren't autistic. My 17 year old granddaughter is living with us and sometimes I think she is more of a challenge than Karac. LOL, Pat K

[Guest guest]

Wow,that is so awesome! I love that when people are so empathetic to other

people's situations.I've had countless experiences when people have been so kind

and conciderate.My son also has issues waiting in line sometimes and I know how

my anxiety level goes up when I see a long wait!

Stacey

From: <all4cam@...>

Date: 2006/08/07 Mon AM 08:30:34 CDT

autism

Subject: Re: Re: A very long plea for help

From: pkuenstler@...

Date: 2006/08/07 Mon AM 08:30:34 CDT

autism

Subject: Re: A very long plea for help

Stacey, several weeks later when I pulled into that same Jack-in-the-Box, the

man remembered us and asked how Karac had been doing?  Needless to say he got

our food ready very quickly. I have found there are many kind, helpful people

when they understand.  Recently I had to make an emergency trip to the pharmacy,

and I had to take karac with me.  The line was really long!!  Karac does not do

well in waiting!!  There were some chairs to the side at the front of the line;

so I had karac sit down.  He is easier to control when he is sitting, and I told

the lady at the end of the line to save that place for me, but that I would have

to keep my eye on Karac; The lady who was next in line heard me and even though

she was in a hurry, told me to go in front of her.  Her kindness almost brought

tears to my eyes.  We were able to get out without an incident and I was most

thankful. Pat K

[Guest guest]

Yep, awesome! Empathy isn't generally a consideration that's given to

people on the spectrum and, also, those that care for them.

Most folks think that autistics are savants or people who just gaze

at dust particles floating around in a sunbeam. That's not to say

that these types of precious souls don't exist, but a vast majority

of autistics exhibit behaviors that defy the accepted norm in our

society.

Generally speaking, when society " experiences " autism on a personal

level, they don't recognize it and assume a great many things.

I'm encouraged by your story. Thanks for sharing it.

Kat

(Who's mission in life is to educate society about austism.)

>

> Wow,that is so awesome! I love that when people are so empathetic

to other people's situations.I've had countless experiences when

people have been so kind and conciderate.My son also has issues

waiting in line sometimes and I know how my anxiety level goes up

when I see a long wait!

>

> Stacey

>

>

>

> From: <all4cam@...>

> Date: 2006/08/07 Mon AM 08:30:34 CDT

> autism

> Subject: Re: Re: A very long plea for help

>

>

> From: pkuenstler@...

> Date: 2006/08/07 Mon AM 08:30:34 CDT

> autism

> Subject: Re: A very long plea for help

>

>

> Stacey, several weeks later when I pulled into that same Jack-in-

the-Box, the man remembered us and asked how Karac had been

doing?  Needless to say he got our food ready very quickly. I have

found there are many kind, helpful people when they

understand.  Recently I had to make an emergency trip to the

pharmacy, and I had to take karac with me.  The line was really

long!!  Karac does not do well in waiting!!  There were some chairs

to the side at the front of the line; so I had karac sit down.  He is

easier to control when he is sitting, and I told the lady at the end

of the line to save that place for me, but that I would have to keep

my eye on Karac; The lady who was next in line heard me and even

though she was in a hurry, told me to go in front of her.  Her

kindness almost brought tears to my eyes.  We were able to get out

without an incident and I was most thankful. Pat K

>

[Guest guest]

Oh, I feel for you so much! I can't imagine how hard this must be

for you.

My best suggestion is to take to a pediatric neurologist and

tell the doctor every single thing. Write a list of SPECIFIC

things. Perhaps you could videotape his behavior for the doctor?

The only way you will get help for is if you have the most

information you can have. I am lucky enough to live near a

children's hospital, I hope you can have enough luck to be close and

to be able to afford this option!

Another choice is to call your local school district and find out if

there is an early intervention program. They will also evaluate him,

but only for educational purposes, not diagnosis.

I wish you the best of luck, write back if I can help any more!1

Kerry

>

> is very strong and very strong willed seven year old with

> developmental delayes and wobbly gross motor. He is non verbal ans

> has a hard time mastering signs. Scary combo. Since

cannot

> communicate well I can understand why he may behave frustrated

> like, But he is now way to difficult for me to handle. My

> daughter is ADHD so I know how one with ADHD acts, but of course

> also have developmental disabilities. His fit throwing has

> increased to the point now where I cannot redirect his energies at

> all. When he has his " fits of rage " for lack of better terms, he

> tries to hurt me or who ever is near by. Sometimes he doesn't even

> know the person they are just walking by at the wrong time. He

> grabs and throws what ever he can reach at that moment and does not

> calm down until he is ready. I can not redirect his attention.

>

> He also has " fits of orneriness " . When he seems in a good mood

> but begins to pinch, pull hair, hit or has even been known to bite

> and scratch out of pure Orneriness. He thinks it is funny. There

> are times when he gets " out of control " hyper active. He spends

> sometimes an hour or more obsessively climbing on chairs, rolling

> around, trying to hang on me, throwing toys, trying to grab other

> things to throw, and sometimes shake his head no till he's

dizzy.

> I have to let him wear down any kind of intervention seems to make

> him more intense or I end up getting hurt. One day when I was on

> the phone he was playing with sister (11) in the same room as I was

> in, out of the blue he came up behind my chair, grabbed my hair

and

> pulled me down. I have no understanding why, except he may have

> been frustrated that sissy would take him outside to play.

>

>

> Meal times are very unhappy most of the time due to

> never wanting to sit down. Also he throws food and dumps his

drinks

> on purpose the tries to eat and drink our dinner. Reminds me of

> Helen Keller except I don't tolerate it. Although I do not know

how

> to really handle situations as this. We take his food away and

tell

> him he has to wait a while to eat. Then he still won't sit in the

> living room while we eat he tries to get into stuff to get my

> attention so I cannot enjoy my meal. Restaurants are a joke. My

> mom took my grandma, my daughter, and I to dinner a Shari's

> last Saturday. After about 5 min he then started standing up on

the

> seat and I had a hard time getting him to sit down, then He kept

> trying to crawl out on the booth right over my lap. I took him

> outside for a walk until our food came and then we went back into

> eat. He would not sit down instead while I was trying to wrestle

> him to sit down he was intentionally trying to put his feet on the

> table to knock things over. I then told my mom to get my food to

go

> and bring it to the car where I put in his car seat, which

> is always a struggle, and he watched me eat. Then I fed him 30 min

> later.

>

> has also started to wander off, getting more brave

and

> as the staple in his head will prove his behavior and I not knowing

> how to handle it is getting us both hurt.

>

> I watched a video today called " Day By Day Raising the child with

> Autism/PDD by Joan F Goodman And Hoban. Although

does

> not have a diagnosis of Autism he has always exhibited some of the

> challenging behaviors and I have always figured what works for

> autism child is worth trying on any developmentally delayed child.

> Any way the girl in this video does everything like . To

the

> tee. never acted unaware of people when he was little and

> loves people, But he is non verbal and age 7 with a mentality in

> some thing of a 3 year old. Also he is like having terrible 2s

> times 10 right now. And transitions are horrible fits even getting

> out of the car it seems. Even though he barely focuses on an

> activity but bounces from one thing to another with no real intent

> It is still hard to get him to do something that is not his idea.

> It is true he act the worst with me his mother so no one believes

> the way he acts.

>

> If any one can offer advice on what I can do to try to cope with

> these very aggressive behaviors I would appreciate your comments.

>

> Thank you

>

>

>

>

[Guest guest]

Kat, you have a good sense of humor. You make me smile. "people who just gaze at dust in the sunset." funny. Pat K

[Guest guest]

Kat, you have a good sense of humor. You make me smile. "people who just gaze at dust in the sunset." funny. Pat K