Re: Manipulation et al

June 15, 2007

I totally understand where you are coming from with your feelings. My son is pretty much the same way, he threatens to runaway, hit me, say the most hurtful and mean things when something doesn't go his way. I do not know what to do at times. Social stories just do not seem to work with him any more. Hope things go well for you today. nikkiJen <diegowench@...> wrote: I keep on coming back to this - there simply are times that things cannot be explained or social storied away. Yesterday Hope tried to gouge out my

eyes with a pencil because I wouldn't give her money (i didn't have any) to walk down to the store and get candy. I am sorry but that is not sensory - that is just willful bad behavior. It is testament to how often I deal with it that it didn't even phase me - I didn't really even react other than to take the pencil away from her. There are times that I am convinced that I live in hell. Jen Mom to four special kids Life may not be the party we asked for - but while we're here, let's dance! Need a vacation? Get great deals to amazing places on Travel.

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June 15, 2007

IT MAY NOT BE SENSORY OR WHAT NOT BUT MY SON HAS THE ADHD ON TOP OF WHAT ELSE HE HAS IN IT HE HAS THE IMPULSIVITY . I THINK ALL KIDS (WHETHER THEY ARE NT OR ASD) THEY CAN FORM SOME BAD THOUGHTS IT IS WHAT THEY DO WITH THE THOUGHTS AND HOW TO CONTROL THEM THAT MAKES THE DIFFERENCE BETWEEN THE NT KID AND THE ASD KID.I EXPLAIN IT LIKE THIS .AN NT KID WILL BE WALKING ON THE SIDEWALK HE LOOKS UP AND SEES THE ICE CREAM STAND ON THE OTHER SIDE OF THE ROAD .MOST KIDS CAN UNDERSTAND (LIKE AT 7 ) TO LOOK BOTH WAYS AND WALK ACROSS THE ROAD WHEN NO CARS ARE COMING OR WAITING FOR THE SIGN TO SAY WALK .OKAY NO PROBLEM RIGHT .WELL MY SON WITH THE WAY HE IS WILL BE WALKING DOWN THE STREET RUN INTO THE ROAD OUT OF THE BLUE NOT LOOKING OR ANYTHING TO GET TO THE ICE CREAM ON THE OTHER SIDE(OKAY OTHER KIDS MAY DO THIS ALSO WHO ARNT ASD) NOT EVEN REALISING A CAR ALMOST HIT HIM . ANOTHER WAY I SEE IT WHEN U AREPLAYING

(ADULTS AND CHILDREN ) AND THERE IS A NASTY EDGE THAT IF U GO OVER IT U WILL GET HURT) MOST PEOPLE WILL AVOID IT KNOWING WHAT WOULD HAPPEN OF THEY RAN TO IT AND NOT WATCH WHAT THEY WERE DOING .MY SON WOULD BE RUNNING RIGHT UP TIO IT BEFORE EVEN THE THOUGHT EVEN COMES INTO HIS HEAD HEY THAT CAUZE AN OUCHY. ANOTHER THING MY SON DOES HE IS VERY VERY AGRESSIVE HE SWINGS AND HITS AND THROWS SWEARS TELLES U HE IS GOING TO KILL U .WHY I KNOW HE CANT CONTROL THIS IS THE WHOLE TIME HE SCREAMS HE IS CRYIONG TELLING ME SORRY WHILE HE SWINGS AT MEAND YOU CAN SEE IN HIS MANNERISMS THAT HE IS TRYING TO CONTROL HIS REACTION BUT HE CANT . MAYBE SHE REALLY DONT WANT TO HURT YOU BUT SHE CANT FIND AN APPROPRIATE WAY TO RELEASE THE FRUSTRATION . I REMEMBER WHEN I WAS A CHILD MY MOM WOULNDT TAKE ME SHOPPING AFTER SHE TOLD ME SHE WOULD ( SHE IS EPILEPTIC AND WOULD GET MINI SIESURES) WELL ID GET SO UPSET I WOULD FEEL ALL FRAZZELD I LITERALLY WOULD

STOMP MY FOOT LIKE A BABY(ID BE 13) AND I WOULD GET SO ANGRY I NEVER STRUCK OUT AT THEM I HAD CONTROL OVER THAT BUT ID FLYU UP TO MY ROOM SLAM THE DOOR AND GRAB THE PILLOWS AND PUNCH THEM I LITERALLY WANTED TO JUST SCREAM AT THE TOP OF MY LUNGS AND TRHOW THINGS ( WHICH I DID DO )BUT I WAS ABLE TO HAVE CONTROL SO I NEVER HIT ANYONE BUT TO BE A CHILD WHO DOESNT REALLY UNDERSTAND WHAT IS GOING ON AND HAS DIFFICULTY CONTROLING BEHAVIORS IT MUST BE REALLY FRIGHTENING AND TO THEM MAYBE THEY THINK THEY ARE RIGHT AND YOU ARE SPITING HER .

DO YOU MEDICATE HER ??

HAVE YOU LOOKED INTO A BEHAVIOR SPECIALIST TO WORK WITH HER? BELIEVE ME I KNOW IT IS VERY HARD TO HANDLE AN AGRESSIVE CHILD .MY HEART GOES OUT TO YOU

..I HAD DESCRIBED MY HOME LIFE ONE TIME TO A FREIND AND HE SAID IT SOUNDED LIKE A WAR ZONE.

I REALLY DO NOT THINK IT IS DONE ON PURPOSE . BUT I HOPE YOU CAN FIND AWAY TO HELP HER TO STOP.GOOD LUCK

VICKIE

Manipulation et al

I keep on coming back to this - there simply are times that things cannot be explained or social storied away. Yesterday Hope tried to gouge out my eyes with a pencil because I wouldn't give her money (i didn't have any) to walk down to the store and get candy.

I am sorry but that is not sensory - that is just willful bad behavior. It is testament to how often I deal with it that it didn't even phase me - I didn't really even react other than to take the pencil away from her.

There are times that I am convinced that I live in hell.

Jen

Mom to four special kids

Life may not be the party we asked for - but while we're here, let's dance!

Need a vacation? Get great deals to amazing places on Travel.

Looking for a deal? Find great prices on flights and hotels with FareChase.

June 15, 2007

Dear ,

When you've raised as many kids as I have, you know that there is no such thing as 'far too young' to grasp anything having to do with relating to another. Kids are always blowing my mind (astonishing me). They know just what they're doing.

Jen needs support and encouragement. She's got a lot going on right now, and to start blaming her for Hope's behavior is both unfair and untrue.

My daughter had a giant meltdown yesterday, and her aide, who was dealing with it with me, told me this morning that she -- the mother of nine! -- went home and went straight to bed till morning.

From my experience, the best advice to ever give to anyone is to go within to listen for Guidance. That way, what we are led to do is appropriate to the moment. My Guide has made very clear that to operate from memory -- what worked, or didn't, some other time -- is not healing.

Guidance is always fresh and new and helpful, astonishingly helpful, even when the only request we can manage at the moment is: "Help!"

It's an awareness of how Loved we all are that helps us and heals, not psychology.

This is from Remembering The Son(g), and, with permission, I have changed the word 'brothers' to 'mothers'.

So, you see: ALL mothers are special. â€“ Unique and Precious to Me and All, beyond anything you can presently imagine. You â€“ yes, You, reading this â€“ are Infinitely important to Everyone and Everything, even though you are totally unaware of this. We watch over your sleeping and await your stirring with more care than that given a one-pound premature baby. You are not hooked to machines but to Our hearts â€“ All Our hearts â€“ and by this I mean Our Love â€“ our Function of Caring â€“ not a â€˜materialâ€™ â€˜organâ€™.

We're not alone in this.

Love,

Francine

In a message dated 6/15/2007 6:36:41 P.M. Eastern Daylight Time, nancy@... writes:

Jen <diegowench > wrote:>>I keep on coming back to this - there simply are times that things cannot >>be explained or social storied away. Yesterday Hope tried to gouge out my >>eyes with a pencil because I wouldn't give her money (i didn't have any) >>to walk down to the store and get candy.I am sorry but that is not sensory - that is just willful bad behavior. <<It may be, but I think you are too busy looking at the behaviour and not thinking about what her thought processes may be which lead up to it.First, I doubt that she really has any understanding of what she is doing, in terms of the hurt/damage she could cause to you. What she has learnt though, is that she needs to go to extremes to get your attention. You need to do a lot of work with her about how her actions can hurt someone - and this is where a social story, which you come back to again and again, could be useful. Social stories are not things which you do once, they have to be repeated over and over.Secondly, *why* did she think you might give her money and allow her to buy sweets? You must have done it in the past - perhaps for the last couple of weeks you have done that on that particular day? She is so desperate to find 'rules' in what you do, it will only take repeating something once or twice for her to make a rule about it ("on Tuesdays mum gives me money to buy sweets"), and then if you don't 'keep' that rule, then she needs to communicate to you that you have broken it. It doesn't matter that you don't know what the rule is (she will not realise that you don't anyway). She is far too young to be able to verbalise her distress at the rule being broken, so she communicates in a more primitive way.Try to see what led up to the 'behaviour', then you are more likely to find a way to help her understand the way the world works.Another thing you need to work on with her is appropriate expression of emotions and attribution of feelings.

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June 16, 2007

Jen <diegowench@...> wrote:

>>I keep on coming back to this - there simply are times that things cannot

>>be explained or social storied away. Yesterday Hope tried to gouge out my

>>eyes with a pencil because I wouldn't give her money (i didn't have any)

>>to walk down to the store and get candy.

I am sorry but that is not sensory - that is just willful bad behavior. <<

It may be, but I think you are too busy looking at the behaviour and not

thinking about what her thought processes may be which lead up to it.

First, I doubt that she really has any understanding of what she is doing,

in terms of the hurt/damage she could cause to you. What she has learnt

though, is that she needs to go to extremes to get your attention. You need

to do a lot of work with her about how her actions can hurt someone - and

this is where a social story, which you come back to again and again, could

be useful. Social stories are not things which you do once, they have to be

repeated over and over.

Secondly, *why* did she think you might give her money and allow her to buy

sweets? You must have done it in the past - perhaps for the last couple of

weeks you have done that on that particular day? She is so desperate to find

'rules' in what you do, it will only take repeating something once or twice

for her to make a rule about it ( " on Tuesdays mum gives me money to buy

sweets " ), and then if you don't 'keep' that rule, then she needs to

communicate to you that you have broken it. It doesn't matter that you don't

know what the rule is (she will not realise that you don't anyway). She is

far too young to be able to verbalise her distress at the rule being broken,

so she communicates in a more primitive way.

Try to see what led up to the 'behaviour', then you are more likely to find

a way to help her understand the way the world works.

Another thing you need to work on with her is appropriate expression of

emotions and attribution of feelings.

June 16, 2007

Hope has had a year of ABA, she is on medication. We have tried everything - social stories, talking, charts (which help a bit), PECS, redirection - giving her an area to cool off - pillows to help - positive reinforcement = you name it! Here is the kicker and why I refuse to believe that a good portion of this is in fact willfull. I just went to her IEP meeting - and guess what?? She is no longer aggressive at school - she CAN self regulate!!! She sometimes self injures at school -but her aide is very very strict and she will start and then stop again... So - I know she is capable of doing this - she has shown everyone! I also know that while I could wish and try my hardest to make things very predictable for her - schedules and so on - there is simply no way that I could make things like that on a daily basis. My husband is a merchant marine - only home 12 weeks per

year, I work full time plus freelance on the side, I have two other daughters - neither of whom are NT etc etc. This whole situation has been my imputus for getting out of California - where there is space for her to run and run. A horse for her to be responsible (well at least partially) for. And friends who support me - (I have regional center and school services here -but her behaviors are so alienating that I no longer even attempt to have any friends). I am sure that it seems extreme to up and move over 1500 miles away to a place I have never been - but it is an extreme reaction to a very extreme situation. Hope does remember about looking both ways - through constant (and really annoying to me!) repetition and our neighbors across the street who are grandparents and really enjoy the kids looking out and repeating some more. Hope has/does and probably will continue to

seriously injure herself and her sibs along with me. I know bad behavior when I see it - this isn't like when she was non verbal. She has the language skills, we have even set up "appropriate angry words" so that she can tell me - I reward her for telling me - I am angry! and we work on figuring out how I can help her. Bottom line - every time this comes up it is because she isn't getting her way. Stupid things like wanting to go to the deli are primary. So - basically I have a choice - either reward her with a trip for a treat every day - or never. Once something has been introduced she demands it - period - and God help all of us when we cannot do what she wants!!!!!! Sensory issues are sensory issues (kind of like IT issues - when you have intermittent problems you can generally know it isn't a settings issue - it is a server issue). So, am I angry - YES! I

have a right to get angry because I flinch whenever she comes near me - I get ANGRY because my two older girls are constantly explaining why they have huge bite mark bruises on their faces etc., I get angry because she kicks my dog when she is angry! She can control herself - she just chooses not to. Because dad is gone ! She tells me daily that she hopes that I die in my sleep and that she should put a knife in my heart. Her psychologist says that she does have adhd (but not severe), and possible mood disorders - again not serious. She takes abilify, Tenex, Prevacid for her GERD, DVATP for bedwetting. Once we get out to Arkansas, I will be making her an appointment to go down to Thoughtful House in Austin Texas - because they do whole child treatment - and theoretically if you can get rid of the GERD/Colitis pain and treat that - the aggression goes way down and you can remove the child

from psychotropic meds. I would love to be able to do this - I am truly if not frightened, at least nervous around my own child and I hate it!!!! I am usually pretty mellow about this stuff - but I am in escrow on this house, hubby is completely out of touch (the Navy seems like it was a cakewalk at this point) - no sat phones, no email - NOTHING, I found out that his car is being literally held together by duct tape, behind on bills and just trying to hang on until we get there while continuing to work 50=60 hours a week just to cover the basics, plus dealing with a hormonal angry daughter convinced that people in AR are all stupid hillbillies who won't know anything about Japanese anime etc., etc., I am so blessed by my best friend who lives out there - his mom had a stroke 2 days ago, and he and his wife are still calling me 2-5x per day just to talk me through all of my anxiety. I am trying to

purchase a car for hubby (actually decided to hand over my 05 Impala that I bought new and only has 32k miles on it) - and they are helping me to understand what I will need out of a car during winter. They truly are such a blessing to me!!! Jenvickie <blackfoot124@...> wrote: IT MAY NOT BE SENSORY OR WHAT NOT BUT MY SON HAS THE ADHD ON TOP OF WHAT ELSE HE HAS IN IT HE HAS

THE IMPULSIVITY . I THINK ALL KIDS (WHETHER THEY ARE NT OR ASD) THEY CAN FORM SOME BAD THOUGHTS IT IS WHAT THEY DO WITH THE THOUGHTS AND HOW TO CONTROL THEM THAT MAKES THE DIFFERENCE BETWEEN THE NT KID AND THE ASD KID.I EXPLAIN IT LIKE THIS .AN NT KID WILL BE WALKING ON THE SIDEWALK HE LOOKS UP AND SEES THE ICE CREAM STAND ON THE OTHER SIDE OF THE ROAD .MOST KIDS CAN UNDERSTAND (LIKE AT 7 ) TO LOOK BOTH WAYS AND WALK ACROSS THE ROAD WHEN NO CARS ARE COMING OR WAITING FOR THE SIGN TO SAY WALK .OKAY NO PROBLEM RIGHT .WELL MY SON WITH THE WAY HE IS WILL BE WALKING DOWN THE STREET RUN INTO THE ROAD OUT OF THE BLUE NOT LOOKING OR ANYTHING TO GET TO THE ICE CREAM ON THE OTHER SIDE(OKAY OTHER KIDS MAY DO THIS ALSO WHO ARNT ASD) NOT EVEN REALISING A CAR ALMOST HIT HIM . ANOTHER WAY I SEE IT WHEN U AREPLAYING (ADULTS AND CHILDREN ) AND THERE IS A NASTY EDGE THAT IF U GO OVER IT U WILL GET HURT) MOST PEOPLE

WILL AVOID IT KNOWING WHAT WOULD HAPPEN OF THEY RAN TO IT AND NOT WATCH WHAT THEY WERE DOING .MY SON WOULD BE RUNNING RIGHT UP TIO IT BEFORE EVEN THE THOUGHT EVEN COMES INTO HIS HEAD HEY THAT CAUZE AN OUCHY. ANOTHER THING MY SON DOES HE IS VERY VERY AGRESSIVE HE SWINGS AND HITS AND THROWS SWEARS TELLES U HE IS GOING TO KILL U .WHY I KNOW HE CANT CONTROL THIS IS THE WHOLE TIME HE SCREAMS HE IS CRYIONG TELLING ME SORRY WHILE HE SWINGS AT MEAND YOU CAN SEE IN HIS MANNERISMS THAT HE IS TRYING TO CONTROL HIS REACTION BUT HE CANT . MAYBE SHE REALLY DONT WANT TO HURT YOU BUT SHE CANT FIND AN APPROPRIATE WAY TO RELEASE THE FRUSTRATION . I REMEMBER WHEN I WAS A CHILD MY MOM WOULNDT TAKE ME SHOPPING AFTER SHE TOLD ME SHE WOULD ( SHE IS EPILEPTIC AND WOULD GET MINI SIESURES) WELL ID GET SO UPSET I WOULD FEEL ALL FRAZZELD I LITERALLY WOULD STOMP MY FOOT LIKE A BABY(ID BE 13) AND I WOULD GET SO ANGRY I NEVER STRUCK OUT AT THEM I HAD CONTROL OVER

THAT BUT ID FLYU UP TO MY ROOM SLAM THE DOOR AND GRAB THE PILLOWS AND PUNCH THEM I LITERALLY WANTED TO JUST SCREAM AT THE TOP OF MY LUNGS AND TRHOW THINGS ( WHICH I DID DO )BUT I WAS ABLE TO HAVE CONTROL SO I NEVER HIT ANYONE BUT TO BE A CHILD WHO DOESNT REALLY UNDERSTAND WHAT IS GOING ON AND HAS DIFFICULTY CONTROLING BEHAVIORS IT MUST BE REALLY FRIGHTENING AND TO THEM MAYBE THEY THINK THEY ARE RIGHT AND YOU ARE SPITING HER . DO YOU MEDICATE HER ?? HAVE YOU LOOKED INTO A BEHAVIOR SPECIALIST TO WORK WITH HER? BELIEVE ME I KNOW IT IS VERY HARD TO HANDLE AN AGRESSIVE CHILD .MY HEART GOES OUT TO YOU .I HAD DESCRIBED MY HOME LIFE ONE TIME TO A FREIND AND HE SAID IT SOUNDED LIKE A WAR ZONE. I REALLY DO NOT THINK IT IS DONE ON PURPOSE . BUT I HOPE YOU CAN FIND AWAY TO HELP HER TO STOP.GOOD LUCK VICKIE Manipulation et al I keep on coming back to this - there simply are times that things cannot be explained or social storied away. Yesterday Hope tried to gouge out my eyes with a pencil because I wouldn't give her money (i didn't have any) to walk down to the store and get candy. I am sorry but that is not sensory - that is just willful bad behavior. It is testament to how often I deal with it that it didn't even phase me - I didn't

really even react other than to take the pencil away from her. There are times that I am convinced that I live in hell. Jen Mom to four special kids Life may not be the party we asked for - but while we're here, let's dance! Need a vacation? Get great deals to amazing places on Travel. Looking for a deal? Find

great prices on flights and hotels with FareChase. Life may not be the party we asked for - but while we're here, let's dance!

Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out.

June 16, 2007

- This is EXACTLY what i am talking about. BAsically this situation is holding my entire family hostage. I cannot simply get her a treat - it then has to be every day - every time. Issue one - I pretty much do not react at all when they do this kind of stuff - I put my hand up in front of me and say - Ok, I am done - and I refuse to discuss it - either they stop or there are consequences... I am hanging onto my sanity by a thread. All of the suggestions are great - if you have one or maybe two kids. I am a single mom 80% of the time - as my husband is a merchant mariner - I am a working mom - and there are other kids iwth other needs besides her!!! I do not always buy them stuff. There will be times that our appointments will run late - and if there is money - rather than let them get cranky and mean because they are so hungry I allow them to go and get a

snack. This happens once in awhile depending upon the situation. I feel like the only one running my household is a six year old child - ok - I understand it isn't fair it just is - and I haven't ever had any anger issues over it before - but now I am along all but 12 weeks a year, strapped for money - and having a child (who does understand about hurting people we talk about this stuff multiple times per day!!!) attempt to injure me. I am afraid to leave my house - and end up in tears constantly because I am absolutely humiliated. We have done everything by the book - and now with only me - still working if we want to keep eating until we get out of here - with three special needs girls - and a schedule that is erratic with absolutely no way to make it otherwise - and I have gotten so depressed that I range from being furious with non caring about anything. Trying to add any type of self

care for myself would make our schedule even more insane... This is a completely lose lose situation. As far as the issues leading up to when this happens - there is another rub. One day she will take stuff in stride and it is all good - the next time - same exact situation - she loses it and someone gets seriously injured (usually me or my 10 year old). Rowell <nancy@...> wrote: Jen <diegowench > wrote:>>I keep on coming back to this - there simply are times that things cannot >>be explained or social storied away. Yesterday Hope tried to gouge out my >>eyes with a pencil because I wouldn't give her money (i didn't have any) >>to walk down to the store and get candy.I am sorry but that is not sensory - that is just willful bad behavior. <<It may be, but I think you are too busy looking at the behaviour and not thinking about what her thought processes may be which lead up to it.First, I doubt that she really has any understanding of what she is doing, in terms of the hurt/damage she could cause to you. What she has learnt though, is that she needs to go to extremes to get your attention. You need to do a lot of work with her about how her actions can hurt someone - and this is where a social story, which

you come back to again and again, could be useful. Social stories are not things which you do once, they have to be repeated over and over.Secondly, *why* did she think you might give her money and allow her to buy sweets? You must have done it in the past - perhaps for the last couple of weeks you have done that on that particular day? She is so desperate to find 'rules' in what you do, it will only take repeating something once or twice for her to make a rule about it ("on Tuesdays mum gives me money to buy sweets"), and then if you don't 'keep' that rule, then she needs to communicate to you that you have broken it. It doesn't matter that you don't know what the rule is (she will not realise that you don't anyway). She is far too young to be able to verbalise her distress at the rule being broken, so she communicates in a more primitive way.Try to see what led up to the 'behaviour', then you are more likely to

find a way to help her understand the way the world works.Another thing you need to work on with her is appropriate expression of emotions and attribution of feelings. Life may not be the party we asked for - but while we're here, let's dance!

Luggage? GPS? Comic books?

Check out fitting gifts for grads at Search.

June 16, 2007

In a message dated 06/15/2007 6:36:40 P.M. Eastern Daylight Time, nancy@... writes:

What she has learnt though, is that she needs to go to extremes to get your attention.

that's awfully assumptive and accusatory. no one can assume what goes on in someone else's home or what they have communicated to their child.

I LOVE SOMEONE WITH AUTISM See what's free at AOL.com.

June 17, 2007

Jen (diegowench):

i think you are doing the absolute best that anyone could do in such a difficult situation as yours. i don't know how you handle it! keep up the great work and don't allow anyone to make you feel like you're doing less than 110%!

I LOVE SOMEONE WITH AUTISM See what's free at AOL.com.

June 17, 2007

i know how it is to have dad gone. My husband has been in the army 5 years and has been gone 3.5 of those years. I know how stressful it can be to raise an autistic child on your own. However there are ways to deal with daddy being gone. My son on cue would get sick the minute my husbands feet hit the plane, he would act up and throw un controllable tantrums. They as children ( not autistic children) dont understand why daddy is gone. Why daddy disiplines one minute and the next hes out of the house again. Toss the autism aspect in there with it, and you have a child who does not grasp the concept of it at all. When the soldiers deploy i always see children acting out , biteing, kicking , punching etc. it takes a month or two to get a handle on things.. in your case, once you get a handle hubbys home and the routine starts all over again.....

Re: Manipulation et al

Hope has had a year of ABA, she is on medication. We have tried everything - social stories, talking, charts (which help a bit), PECS, redirection - giving her an area to cool off - pillows to help - positive reinforcement = you name it!

Here is the kicker and why I refuse to believe that a good portion of this is in fact willfull. I just went to her IEP meeting - and guess what?? She is no longer aggressive at school - she CAN self regulate!!! She sometimes self injures at school -but her aide is very very strict and she will start and then stop again...

So - I know she is capable of doing this - she has shown everyone! I also know that while I could wish and try my hardest to make things very predictable for her - schedules and so on - there is simply no way that I could make things like that on a daily basis. My husband is a merchant marine - only home 12 weeks per

year, I work full time plus freelance on the side, I have two other daughters - neither of whom are NT etc etc.

This whole situation has been my imputus for getting out of California - where there is space for her to run and run. A horse for her to be responsible (well at least partially) for. And friends who support me - (I have regional center and school services here -but her behaviors are so alienating that I no longer even attempt to have any friends). I am sure that it seems extreme to up and move over 1500 miles away to a place I have never been - but it is an extreme reaction to a very extreme situation.

Hope does remember about looking both ways - through constant (and really annoying to me!) repetition and our neighbors across the street who are grandparents and really enjoy the kids looking out and repeating some more. Hope has/does and probably will continue to

seriously injure herself and her sibs along with me.

I know bad behavior when I see it - this isn't like when she was non verbal. She has the language skills, we have even set up "appropriate angry words" so that she can tell me - I reward her for telling me - I am angry! and we work on figuring out how I can help her. Bottom line - every time this comes up it is because she isn't getting her way. Stupid things like wanting to go to the deli are primary. So - basically I have a choice - either reward her with a trip for a treat every day - or never. Once something has been introduced she demands it - period - and God help all of us when we cannot do what she wants!!!!!! Sensory issues are sensory issues (kind of like IT issues - when you have intermittent problems you can generally know it isn't a settings issue - it is a server issue).

So, am I angry - YES! I

have a right to get angry because I flinch whenever she comes near me - I get ANGRY because my two older girls are constantly explaining why they have huge bite mark bruises on their faces etc., I get angry because she kicks my dog when she is angry! She can control herself - she just chooses not to. Because dad is gone !

She tells me daily that she hopes that I die in my sleep and that she should put a knife in my heart. Her psychologist says that she does have adhd (but not severe), and possible mood disorders - again not serious. She takes abilify, Tenex, Prevacid for her GERD, DVATP for bedwetting.

Once we get out to Arkansas, I will be making her an appointment to go down to Thoughtful House in Austin Texas - because they do whole child treatment - and theoretically if you can get rid of the GERD/Colitis pain and treat that - the aggression goes way down and you can remove the child

from psychotropic meds. I would love to be able to do this - I am truly if not frightened, at least nervous around my own child and I hate it!!!!

I am usually pretty mellow about this stuff - but I am in escrow on this house, hubby is completely out of touch (the Navy seems like it was a cakewalk at this point) - no sat phones, no email - NOTHING, I found out that his car is being literally held together by duct tape, behind on bills and just trying to hang on until we get there while continuing to work 50=60 hours a week just to cover the basics, plus dealing with a hormonal angry daughter convinced that people in AR are all stupid hillbillies who won't know anything about Japanese anime etc., etc.,

I am so blessed by my best friend who lives out there - his mom had a stroke 2 days ago, and he and his wife are still calling me 2-5x per day just to talk me through all of my anxiety. I am trying to

purchase a car for hubby (actually decided to hand over my 05 Impala that I bought new and only has 32k miles on it) - and they are helping me to understand what I will need out of a car during winter. They truly are such a blessing to me!!!

Jen

vickie <blackfoot124 > wrote:

IT MAY NOT BE SENSORY OR WHAT NOT BUT MY SON HAS THE ADHD ON TOP OF WHAT ELSE HE HAS IN IT HE HAS

THE IMPULSIVITY . I THINK ALL KIDS (WHETHER THEY ARE NT OR ASD) THEY CAN FORM SOME BAD THOUGHTS IT IS WHAT THEY DO WITH THE THOUGHTS AND HOW TO CONTROL THEM THAT MAKES THE DIFFERENCE BETWEEN THE NT KID AND THE ASD KID.I EXPLAIN IT LIKE THIS .AN NT KID WILL BE WALKING ON THE SIDEWALK HE LOOKS UP AND SEES THE ICE CREAM STAND ON THE OTHER SIDE OF THE ROAD .MOST KIDS CAN UNDERSTAND (LIKE AT 7 ) TO LOOK BOTH WAYS AND WALK ACROSS THE ROAD WHEN NO CARS ARE COMING OR WAITING FOR THE SIGN TO SAY WALK .OKAY NO PROBLEM RIGHT .WELL MY SON WITH THE WAY HE IS WILL BE WALKING DOWN THE STREET RUN INTO THE ROAD OUT OF THE BLUE NOT LOOKING OR ANYTHING TO GET TO THE ICE CREAM ON THE OTHER SIDE(OKAY OTHER KIDS MAY DO THIS ALSO WHO ARNT ASD) NOT EVEN REALISING A CAR ALMOST HIT HIM . ANOTHER WAY I SEE IT WHEN U AREPLAYING (ADULTS AND CHILDREN ) AND THERE IS A NASTY EDGE THAT IF U GO OVER IT U WILL GET HURT) MOST PEOPLE

WILL AVOID IT KNOWING WHAT WOULD HAPPEN OF THEY RAN TO IT AND NOT WATCH WHAT THEY WERE DOING .MY SON WOULD BE RUNNING RIGHT UP TIO IT BEFORE EVEN THE THOUGHT EVEN COMES INTO HIS HEAD HEY THAT CAUZE AN OUCHY. ANOTHER THING MY SON DOES HE IS VERY VERY AGRESSIVE HE SWINGS AND HITS AND THROWS SWEARS TELLES U HE IS GOING TO KILL U .WHY I KNOW HE CANT CONTROL THIS IS THE WHOLE TIME HE SCREAMS HE IS CRYIONG TELLING ME SORRY WHILE HE SWINGS AT MEAND YOU CAN SEE IN HIS MANNERISMS THAT HE IS TRYING TO CONTROL HIS REACTION BUT HE CANT .

MAYBE SHE REALLY DONT WANT TO HURT YOU BUT SHE CANT FIND AN APPROPRIATE WAY TO RELEASE THE FRUSTRATION . I REMEMBER WHEN I WAS A CHILD MY MOM WOULNDT TAKE ME SHOPPING AFTER SHE TOLD ME SHE WOULD ( SHE IS EPILEPTIC AND WOULD GET MINI SIESURES) WELL ID GET SO UPSET I WOULD FEEL ALL FRAZZELD I LITERALLY WOULD STOMP MY FOOT LIKE A BABY(ID BE 13) AND I WOULD GET SO ANGRY I NEVER STRUCK OUT AT THEM I HAD CONTROL OVER

THAT BUT ID FLYU UP TO MY ROOM SLAM THE DOOR AND GRAB THE PILLOWS AND PUNCH THEM I LITERALLY WANTED TO JUST SCREAM AT THE TOP OF MY LUNGS AND TRHOW THINGS ( WHICH I DID DO )BUT I WAS ABLE TO HAVE CONTROL SO I NEVER HIT ANYONE BUT TO BE A CHILD WHO DOESNT REALLY UNDERSTAND WHAT IS GOING ON AND HAS DIFFICULTY CONTROLING BEHAVIORS IT MUST BE REALLY FRIGHTENING AND TO THEM MAYBE THEY THINK THEY ARE RIGHT AND YOU ARE SPITING HER .

DO YOU MEDICATE HER ??

HAVE YOU LOOKED INTO A BEHAVIOR SPECIALIST TO WORK WITH HER? BELIEVE ME I KNOW IT IS VERY HARD TO HANDLE AN AGRESSIVE CHILD .MY HEART GOES OUT TO YOU

..I HAD DESCRIBED MY HOME LIFE ONE TIME TO A FREIND AND HE SAID IT SOUNDED LIKE A WAR ZONE.

I REALLY DO NOT THINK IT IS DONE ON PURPOSE . BUT I HOPE YOU CAN FIND AWAY TO HELP HER TO STOP.GOOD LUCK

VICKIE

Manipulation et al

I keep on coming back to this - there simply are times that things cannot be explained or social storied away. Yesterday Hope tried to gouge out my eyes with a pencil because I wouldn't give her money (i didn't have any) to walk down to the store and get candy.

I am sorry but that is not sensory - that is just willful bad behavior. It is testament to how often I deal with it that it didn't even phase me - I didn't

really even react other than to take the pencil away from her.

There are times that I am convinced that I live in hell.

Jen

Mom to four special kids

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June 17, 2007

jennifer,

i can so relate to hwat you are going through .i have 4 kids 2 with the hfa .they range from ages 4 through 16.and i am a single mother all the time.my x only gets them saturdays from 5 pm to sunday 8 pm.that is it he dont call during the week he doesnt take them during the week to help me .nothing. and i so know what u mean by just having to deal with one maybe 2 kids but to have so many and to have mulitple kids with special needs you feel like each kid has a part of you and is yanking you like u are the rope in a tug of war game.add to this the responsiblility of the house and finances and keeping every one on the right schedules well there is only one way to sum it up OVERWHELMED .I was wondering I get a family based team in my house they visit 2 times a week for 8 months and they help you and the kids.basically it will help you by coming in and teaching you ways that you can do to help your child .i know with me

sticker charts and times outs do not work with me so they will help me find different ways to help. another avenue is you can try for respit care .you can either take the kids to them or they reimburse you for the sitter at their rate(respit)this way you can get out for a few hours and relax and pull yourself together.here we have a thing called spark where they have a place(usually the y) with beds and you call in and request a bed so they can spend a few days there so you can get things done and have a break .I cannot recall what the ages of the kids were but is there a way you can delegate some minor jobs to the girls ,make it like a game .( a spinner like in a game and on the spinner you have chores that they can do ex: set the table ,vacuum,dust stuff like that)try sepreting your day into 3 parts the am routine, the afternoon routine and the evening routine.maybe make a lil chart that tells them where they are chart mark the routines then put lil

velcroed felt people so they can move the "themselves to the routine they are in ) you can try this also with tasks daily living skills ,hygiene,washing ,.

my son also responds the way your girl responds. he flips out on me hitting, throwing, swearing ,screaming i have had them do it in the stores drs officesfriends and families houses .yea it is embarrassing and i have had people give me the looks and make the snide lil commentsi ignore it and deal with my kids .is there a way you can restrin her when she flips like hold her down so che cant hurt anyone or herself i cannot with my son he is to strong when he is flipping ..i havnt done it yet but i was also thinking about taping him when he is in a fit and then when he is calm show him what he did .maybe see if he can recall what set him off.my sons are the same way they may be lil angels one day and be the evil twin the next .if you ever want to chat i am here blackfoot124 i am alsways invisible so you can just send out a hello anybody home i will answer if i am on . hopefully we can figure something out for your girls and my boys i have

been looking for ways to help them .but i never know which way to go .

talk to u soon sorry bout the book

vickie

Re: Manipulation et al

-

This is EXACTLY what i am talking about. BAsically this situation is holding my entire family hostage. I cannot simply get her a treat - it then has to be every day - every time. Issue one - I pretty much do not react at all when they do this kind of stuff - I put my hand up in front of me and say - Ok, I am done - and I refuse to discuss it - either they stop or there are consequences. .. I am hanging onto my sanity by a thread. All of the suggestions are great - if you have one or maybe two kids. I am a single mom 80% of the time - as my husband is a merchant mariner - I am a working mom - and there are other kids iwth other needs besides her!!! I do not always buy them stuff. There will be times that our appointments will run late - and if there is money - rather than let them get cranky and mean because they are so hungry I allow them to go and get a snack. This happens once in awhile

depending upon the situation.

I feel like the only one running my household is a six year old child - ok - I understand it isn't fair it just is - and I haven't ever had any anger issues over it before - but now I am along all but 12 weeks a year, strapped for money - and having a child (who does understand about hurting people we talk about this stuff multiple times per day!!!) attempt to injure me. I am afraid to leave my house - and end up in tears constantly because I am absolutely humiliated.

We have done everything by the book - and now with only me - still working if we want to keep eating until we get out of here - with three special needs girls - and a schedule that is erratic with absolutely no way to make it otherwise - and I have gotten so depressed that I range from being furious with non caring about anything. Trying to add any type of self care for myself would make our schedule even more insane... This is a completely lose lose situation.

As far as the issues leading up to when this happens - there is another rub. One day she will take stuff in stride and it is all good - the next time - same exact situation - she loses it and someone gets seriously injured (usually me or my 10 year old).

Rowell <nancyrowellfamily (DOT) plus.com> wrote:

Jen <diegowench (DOT) com> wrote:>>I keep on coming back to this - there simply are times that things cannot >>be explained or social storied away. Yesterday Hope tried to gouge out my >>eyes with a pencil because I wouldn't give her money (i didn't have any) >>to walk down to the store and get candy.I am sorry but that is not sensory - that is just willful bad behavior. <<It may be, but I think you are too busy looking at the behaviour and not thinking about what her thought processes may be which lead up to it.First, I doubt that she really has any understanding of what she is doing, in terms of the hurt/damage she could cause to you. What she has learnt though, is that she needs to go to extremes to get your attention. You need to do a lot of work with her about how her actions can hurt someone - and

this is where a social story, which you come back to again and again, could be useful. Social stories are not things which you do once, they have to be repeated over and over.Secondly, *why* did she think you might give her money and allow her to buy sweets? You must have done it in the past - perhaps for the last couple of weeks you have done that on that particular day? She is so desperate to find 'rules' in what you do, it will only take repeating something once or twice for her to make a rule about it ("on Tuesdays mum gives me money to buy sweets"), and then if you don't 'keep' that rule, then she needs to communicate to you that you have broken it. It doesn't matter that you don't know what the rule is (she will not realise that you don't anyway). She is far too young to be able to verbalise her distress at the rule being broken, so she communicates in a more primitive way.Try to see what led up to the

'behaviour', then you are more likely to find a way to help her understand the way the world works.Another thing you need to work on with her is appropriate expression of emotions and attribution of feelings.

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June 17, 2007

at school she has the aid and the aid is pretty strict.do u have the aid at home and if you do how many hours and that.my son is great at school he listens well he doesnt have the fits at school. the most noticble difference between school and home is structure /routine .i know with my kids they are in school all day following this rule and that when they get home well it is like another world they can move around ,read watch tv ,go outside and play they have more freedom at home.and i know my home is not well strucutred like school although i wished it was i have been wanting to make my house routine and organised .lol some day lol .not to be weird or rude it isn my business .but could your husband look for a job where he can be home more .it is way to hard on one person .and you shoulndt have to

go through it alone.

i know what u mean about being frightened i am like walking on egg shells not knowing when he will flip or my other son who is taller than me .and i cant get a hold of him i posted another respince to one of ur posts u may of gotten it already not sure but family based services i think would be a godsend for you . and they say if u r having a crisis call the emervgency number they give or the police i know it is scary and it may make u feel like crap to call the cops on ur lil girl but the safety of you and the other girls you need to think about .to protect them .i dont know how she can be flipping out the way she does and not be severe in anything .did u check into bi polar or another illness a long the lines of that.i wouldnt stop giving her a treat if U WANT to give her a treat .but if she flips over wanting it make sure you dont give it to her. all the parenting mags and books say if you give in they are then taught that this is what it

will take to get you to give her the treat so the next time she wants soemthing she will go right to the fit to get it.BUT I KNOW IT IS SO HARD IT IS LIKE WITH MY SON I DONT WANT TO GIVE IN BUT DAMMIT IF IT WILL GET HIM TO STOP BUT THERE IS THE MISTAKE THE INCONSISTANCY.

oh the crossing the rd thing was just my x ample i dotn aleways know how to xplain things well . have you tried deep pressure that may help not sure it has been ahile since i used it . i dotn want u to think i am telling u what to do i am just making sugggestuions that have been giving to me from the family based ,teachers drs i am in the same boat at a loss as what to do if i think of anything else or if by chance something i do works i will let u know

vickie

Manipulation et al

I keep on coming back to this - there simply are times that things cannot be explained or social storied away. Yesterday Hope tried to gouge out my eyes with a pencil because I wouldn't give her money (i didn't have any) to walk down to the store and get candy.

I am sorry but that is not sensory - that is just willful bad behavior. It is testament to how often I deal with it that it didn't even phase me - I didn't really even react other than to take the pencil away from her.

There are times that I am convinced that I live in hell.

Jen

Mom to four special kids

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June 17, 2007

Jen,

I simply do not know how you do it!! I am humbled by what you have

on your plate. I am a quite a bit older mom, with only one child

left at home, ds13, who I am afraid of. and " needs " " wants " his way

when he wants something. It seems like the very first time he gets

something, he EXPECTS, it whenever he wants it and he thinks I am

the one being unreasonable and he will do absolutely anything to

make me. I'm under a 100 pds and he's topping over 140 pds and

strong.

I don't know what you daughter's dx is but can you get respite or

housekeeping services through an agency to help you? I have to go

through the mental health system because of my son's dx so it is

more difficult to get services. I paid out of pocket for respite

and the mental health system pays for the behaviorist. Still

waiting on the Dr. to put the correct code so I can get what he

needs with the right type of people.

I hate to say it, but maybe another medication might help. My son

was/is so bad and I so desperately wanted to keep him at home

because he could not survive the other alternatives, that I was

willing to try anything. Depakote helps my son's aggression...i've

heard others say it made theirs aggressive, but I think it helps

many more than it doesn't.

My thoughts are with you...hang in best you can.

Judy

> >>I keep on coming back to this - there simply are times that

things cannot

> >>be explained or social storied away. Yesterday Hope tried to

gouge out my

> >>eyes with a pencil because I wouldn't give her money (i didn't

have any)

> >>to walk down to the store and get candy.

>

> I am sorry but that is not sensory - that is just willful bad

behavior. <<

>

> It may be, but I think you are too busy looking at the behaviour

and not

> thinking about what her thought processes may be which lead up to

it.

>

> First, I doubt that she really has any understanding of what she

is doing,

> in terms of the hurt/damage she could cause to you. What she has

learnt

> though, is that she needs to go to extremes to get your attention.

You need

> to do a lot of work with her about how her actions can hurt

someone - and

> this is where a social story, which you come back to again and

again, could

> be useful. Social stories are not things which you do once, they

have to be

> repeated over and over.

>

> Secondly, *why* did she think you might give her money and allow

her to buy

> sweets? You must have done it in the past - perhaps for the last

couple of

> weeks you have done that on that particular day? She is so

desperate to find

> 'rules' in what you do, it will only take repeating something once

or twice

> for her to make a rule about it ( " on Tuesdays mum gives me money

to buy

> sweets " ), and then if you don't 'keep' that rule, then she needs

to

> communicate to you that you have broken it. It doesn't matter that

you don't

> know what the rule is (she will not realise that you don't

anyway). She is

> far too young to be able to verbalise her distress at the rule

being broken,

> so she communicates in a more primitive way.

>

> Try to see what led up to the 'behaviour', then you are more

likely to find

> a way to help her understand the way the world works.

>

> Another thing you need to work on with her is appropriate

expression of

> emotions and attribution of feelings.

>

> Life may not be the party we asked for - but while we're here,

let's dance!

>

> ---------------------------------

> Luggage? GPS? Comic books?

> Check out fitting gifts for grads at Search.

>

June 17, 2007

>>Jen needs support and encouragement. She's got a lot going on right now,

>>and to start blaming her for Hope's behavior is both unfair and untrue.<<

I absolutely was not blaming her for Hope's behaviour. I'm sorry if you read

it that way, but I'm afraid that is down to you, not me. I have made post

after post trying to give Jen some positive suggestions as to how she could

deal with the situation. I would call that giving support and encouragement.

Everything I've said has based on my knowledge gained over many years from

bringing up children (and not just my own - I have been a childminder

amongst other things), from studying about autism and also studying child

development (I have a degree in psychology too). My son is ASD. Plus my

husband is also ASD and has been able to give me insights into the way he

sees the world.

ASD is a developmental disorder. Children with it do not develop at the same

rate as NT children. In particular they do not develop Theory of Mind at

around 4 years - some will get when older, some never do. This means they do

not have a handle on the fact that others' thoughts and beliefs are

different to their own and this makes a big difference to how they interpret

the world. To them the world is a confusing, bewildering place. People do

not say what they mean or mean what they say. Those with ASD do not 'see'

non-verbal behaviour, so do not understand that the words have been

'modified' by tone of voice/gesture etc.

I'm fed up with trying to counter your constant accusations and nastiness

towards me, so I will leave this group now.

June 17, 2007

Jen,

Just some final thoughts (and I too know what it is like to be a 'single'

mum, my husband has either worked away from home or had a long commute

during my kids entire lives - 21 years).

1. Try to make as much as possible visual rather than using spoken words.

Those with ASD are often slower at processing speech and can't keep up with

what is being said. Also, if it is written down (as pictures or words) then

it will be the same every time. With the best will in the world when

speaking you cannot repeat exactly what you've said before, but that means

new processing every time for someone with ASD. Much better if they have the

consistentcy and predictablility of visual.

2. If an appointment means that a meal may be late, then either have a snack

before you go or take something with you. Fruit is a good idea for lots of

reasons. Don't be buying stuff when you are out. Make sure that 'snack time'

is included on your visual schedule, so Hope knows it will happen. Using

velcro pictures for a schedule means you can make each day as varied as it

needs to be.

3. Take books, toys or even game boys with you to appointments to stop them

getting cranky.

4. Introduce pocket money. Obviously this has to be an amount you can afford

*every* week. I don't know how much sweets cost, but maybe a couple of

dollars every week would be suitable for Hope. She can spend it anytime

during the week, but you make it clear that is all she gets. It might be

easier to start with a daily amount (a dime or two for instance) until she

gets used to the idea.

The aim is to make things as ordered and predictable as possible for Hope,

so she can start to make sense of our confusing world, without restricting

everyone's lives. It's not easy, nor are there overnight solutions. As with

everything in life, it has to be worked at.

I wish you all the best.

June 17, 2007

Jen. My heart is breaking for you. When do you head out for AR? Ever consider lining up a place out there (AR) and declaring bankruptcy? Simply start over financially. Also,,,,,from the sound of your other email,,,,,,,your doc doesn't think your childs' behavior is "that bad". Can you get another doc? I really think you need to get out of your situation as fast as possible and get to where you have support (AR). Please keep me posted. RobinJen <diegowench@...> wrote: - This is EXACTLY what i am talking about. BAsically this situation is holding my entire family hostage. I cannot simply get her a treat - it then has to be every day - every time. Issue one - I pretty much do not react at all when they do this kind of stuff - I put my hand up in front of me and say - Ok, I am done - and I refuse to discuss it - either they stop or there are consequences... I am hanging onto my sanity by a thread. All of the suggestions are great - if you have one or maybe two kids. I am a single mom 80% of the time - as my husband is a merchant mariner - I am a working mom - and there are other kids iwth other needs besides her!!! I do not always buy them stuff. There will be times that our appointments will run late - and if there is money - rather than let them get cranky

and mean because they are so hungry I allow them to go and get a snack. This happens once in awhile depending upon the situation. I feel like the only one running my household is a six year old child - ok - I understand it isn't fair it just is - and I haven't ever had any anger issues over it before - but now I am along all but 12 weeks a year, strapped for money - and having a child (who does understand about hurting people we talk about this stuff multiple times per day!!!) attempt to injure me. I am afraid to leave my house - and end up in tears constantly because I am absolutely humiliated. We have done everything by the book - and now with only me - still working if we want to keep eating until we get out of here - with three special needs girls - and a schedule that is erratic with absolutely no way to make it otherwise - and I have gotten so depressed that I range from being furious

with non caring about anything. Trying to add any type of self care for myself would make our schedule even more insane... This is a completely lose lose situation. As far as the issues leading up to when this happens - there is another rub. One day she will take stuff in stride and it is all good - the next time - same exact situation - she loses it and someone gets seriously injured (usually me or my 10 year old). Rowell <nancyrowellfamily (DOT) plus.com> wrote: Jen <diegowench > wrote:>>I keep on coming back to this - there simply are times that things cannot >>be explained or social storied away. Yesterday Hope tried to gouge out

my >>eyes with a pencil because I wouldn't give her money (i didn't have any) >>to walk down to the store and get candy.I am sorry but that is not sensory - that is just willful bad behavior. <<It may be, but I think you are too busy looking at the behaviour and not thinking about what her thought processes may be which lead up to it.First, I doubt that she really has any understanding of what she is doing, in terms of the hurt/damage she could cause to you. What she has learnt though, is that she needs to go to extremes to get your attention. You need to do a lot of work with her about how her actions can hurt someone - and this is where a social story, which you come back to again and again, could be useful. Social stories are not things which you do once, they have to be repeated over and over.Secondly, *why* did she think you might give her money and allow her to buy sweets? You

must have done it in the past - perhaps for the last couple of weeks you have done that on that particular day? She is so desperate to find 'rules' in what you do, it will only take repeating something once or twice for her to make a rule about it ("on Tuesdays mum gives me money to buy sweets"), and then if you don't 'keep' that rule, then she needs to communicate to you that you have broken it. It doesn't matter that you don't know what the rule is (she will not realise that you don't anyway). She is far too young to be able to verbalise her distress at the rule being broken, so she communicates in a more primitive way.Try to see what led up to the 'behaviour', then you are more likely to find a way to help her understand the way the world works.Another thing you need to work on with her is appropriate expression of emotions and attribution of feelings. Life may not be the party we asked for - but while we're here, let's dance! Luggage? GPS? Comic books? Check out fitting gifts for grads at Search.

Be a better Heartthrob. Get better relationship answers from someone who knows. Answers - Check it out.

June 17, 2007

,

Please dont leave I feel you give good advice and another mother/father may need to hear what you have to say .every one here has opinions I wished people didnt think thiers are the only ones.But I would love for you to stay on I have followed some of your advice time and again .

Vickie

Re: Manipulation et al

>>Jen needs support and encouragement. She's got a lot going on right now, >>and to start blaming her for Hope's behavior is both unfair and untrue.<<I absolutely was not blaming her for Hope's behaviour. I'm sorry if you read it that way, but I'm afraid that is down to you, not me. I have made post after post trying to give Jen some positive suggestions as to how she could deal with the situation. I would call that giving support and encouragement.Everything I've said has based on my knowledge gained over many years from bringing up children (and not just my own - I have been a childminder amongst other things), from studying about autism and also studying child development (I have a degree in psychology too). My son is ASD. Plus my husband is also ASD and has been able to give me insights into the way he sees the world.ASD is a developmental disorder. Children with it do not develop at

the same rate as NT children. In particular they do not develop Theory of Mind at around 4 years - some will get when older, some never do. This means they do not have a handle on the fact that others' thoughts and beliefs are different to their own and this makes a big difference to how they interpret the world. To them the world is a confusing, bewildering place. People do not say what they mean or mean what they say. Those with ASD do not 'see' non-verbal behaviour, so do not understand that the words have been 'modified' by tone of voice/gesture etc.I'm fed up with trying to counter your constant accusations and nastiness towards me, so I will leave this group now.

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June 17, 2007

Jen,

I know you are finding this all tough but please try to see that Hope is

doing her best not to be autistic.

>>Here is the kicker and why I refuse to believe that a good portion of this

>>is in fact willfull. I just went to her IEP meeting - and guess what??

>>She is no longer aggressive at school - she CAN self regulate!!! <<

It is *so* common for ASD kids to do the 'pretending to be normal' thing at

school. But they use up every ounce of energy they have doing so that they

just can't at home. It is physically and mentally exhausting for them. They

have to have somewhere to let out all that pent-up emotion and that is

somewhere they feel safe, ie at home. Believe me this happens over and over,

it is not just Hope. That is how ASD is. With some it comes out as anger,

with others it can be withdrawal. Schedule in 'downtime' after school - this

may have to be 2 or more hours when no-one has any expectations of her. She

is not expected to interact with anyone (family or otherwise), but just gets

to 'chill' in whatever way she finds most helpful. My son used to watch

videos.

When my husband gets home it can take a whole weekend before he is able to

listen or talk to me.

>>She has the language skills,<<

Don't think that because she can talk that her speech and understanding are

'normal'. She will have on-going problems with receptive and expressive

language, and receptive and expressive prosody. She will NOT have the same

skills as other children her age. She will also be way behind in her

emotional development - learning to recognise and correctly express her own

emotions.

June 17, 2007

For " anger " I would substitute as " expression and reactions caused by anxiety or

frustration " , as negative emotions are not natural to us within the spectrum

unless caused by " violent outbursts " as a result of negative effects by

medications, diet, etc ... " withdrawal " I guess means willful refusal not to

engage for concern of not doing something the right way, or standing out, etc.

....

BR,

Damon.

At 16:32 17/06/2007, you wrote:

>With some it comes out as anger, with others it can be withdrawal.

--

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June 17, 2007

'It is *so* common for ASD kids to do the 'pretending to be normal' thing at School. But they use up every ounce of energy they have doing so that they Just can't at home. It is physically and mentally exhausting for them. They Have to have somewhere to let out all that pent-up emotion and that is Somewhere they feel safe, ie at home. Believe me this happens over and over, "

This describes my son to a tee! You are so right, . At my son's school I have run across so many who think that I am the one with the problem, that I want special attention for my son for no reason. They just don't see him when he is at home, in a safe place where he doesn't have to pretend anymore. I can only imagine how hard it is for him to keep everything inside all day at school, it's no wonder it boils out of him within minutes or coming home!

Estevan, SK

Canada

June 17, 2007

Hi Judy,I am sitting in front of my computer listening to my 10 year old screaming at the top of her lungs at Hope - realizing I really should be out there "making" her help her sister, but honestly I simply cannot put out one more fire today.I have respite services, but haven't used them yet - they just went through. I was going to use them this weekend, but Hope's godmother came through yesterday to take her for the day - she came home early because her godmothers grandmother who she takes care of fell and broke her collarbone. I need to call them on Monday because I cannot get anything done with Hope there at my office. My mom was supposed to help (we haven done this before and everyone at my office is awesome trying to help. I am supposed to be moving (closing escrow out of state July 12th) - things are insane right now, although the Navy will pack us and move us - I really don't want all the clutter and trash moved.

My house is generally a complete disaster. So I spent the entire day yesterday going through my front room which my sewing hobby has taken over. The goal was to get all of my sewing supplies and fabrics to fit into two large boxes. Well - I am pretty proud of myself - I got the stuff into two boxes and then a third that has the bolts of fabric and my sewing machine. I hate looking at stuff I spent good money on and thinking about tossing it - but I have realized that I have ceased to own my "stuff" - it owns me. When looking at the stuff i use to make clothing and quilts and having it stress me out - it kind of defeats the whole purpose.As far as other services, Regional Center has everything in the works right now, but we are moving out of state - I fought for almost 2 years to get her these services, and I am bummed. However, Arkansas has wrap around services, which are next to impossible to get here in California. My

best friend (who is a paraplegic) has a visiting nurse who has promised to help me navigate all the stuff available. I am hoping/praying and desperate to do whatever extreme measures will give me some kind of peace in the household.The completely opposite needs of my two youngest is difficult at best and impossible at worst. My 10 year old is severely adhd and needs constant stimulation or she creates chaos. Hope needs sameness and minimal stimulation - so if I meet the needs of one - then I am directly undermining the needs of the other. Sara cannot handle sameness - she becomes a nightmare - she has been known to scream for up to 12 hours (it is insane and the police are always coming to the house when it happens). Hope is violent - not so much when her dad is here - but the whole deal with her dad being gone all the time makes everything crazy. If there had been ANY other job available he would have taken it - home depot would

have taken him at 10 an hour - but even with me working full time we would have to move to a studio apartment and get rid of my precious animals.Right now, Hope is rolling around on the floor screaming and saying she wants to kill everyone or kill me. This is because she was supposed to help Sara bring in the sorted stuff out the car from the week. Simple right? Broken down into baby steps, explained exactly why we were doing it (I am buying a new car next week - my husband is driving a 16 year old car held together by duct tape and a prayer back and forth to Cali from Louisiana. We have talked about it for half of the week - and now she is breaking things in her room screaming about that she wasnts to die and wants everyone to die. This is her reaction to her not getting her way. I understand autism, and I understand sensory stuff - I also have four children, and I understand willfull behavior. Hope is not profoundly

autistic, she is verbal and can express herself decently if not well. This is willfullness - plain and simple.Between this and my oldest daughter (15) who is an Aspie's passive aggressive bs - well it is a bit much you know. Hope ran out here just now screaming I am sorry I am sorry - which sorry is BS. She is trying to get out of doing what she needs to do. I have already been slapped across the face, bitten, scratched and kicked this week.She has a pdoc appointment in two weeks - this is the top psychiatrist for kids in the county and we cannot get in early. While looking for a new psychiatrist that takes military health coverage - there are two - and the other one had no openings... Supposedly, Jarrod will be getting new health care - so I should have some options - but so far I am stuck. I am praying hourly that getting the kids out of the hectic too fast paced southern california lifestyle will work -

give me some peace. I just don't know. What I do know is that my best friend and his wife (the wife is just shy of a nursing degree and very high energy - besides taking care of Troy who is a paraplegic and has a broken hip that cannot be set because his pelvis is fused to his back - I hope to have some help. I am really depending on that whole southern hospitality thing - and praying that it will at least give us a positive change.I am at the top of my game right now career wise - I didn't finish college (I was a nursing major 9 units short of my degree when I had my second child), I started where I am as a file clerk taking over my son's summer job so Hope could go to preschool, now I do web and graphic design along with network engineering and systems admin - self taught. But the joy and sense of accomplishment I had are gone. I thought that once we figured out what was up with Hope, then a year of very intensive ABA and behavior

modification - plus her going from non verbal to around a 3-4 year old level - things would be better. And when Jarrod is home, they are - but as soon as he lives things decend to where I feel like I am living like an animal. Because I don't want to live in reaction mode, very little gets any kind of a response from me. Like I said before - Hope wanted to gouge my eyes out - I didn't even get upset. I just took the pencil from her and cringed because I was getting that "look" from everyone. I am so shamed that I won't even walk outside of my house - I make a mad dash into my car - and leave.I don't think I am really doing anything other than the basics, I am stressed beyond belief, and trying to hang onto my job until we leave because we are behind on all our bills - that at least there is an end in sight to - cost of living is much lower in AR - and since we won't be dependent on the local economy - it won't be a shortlived

relief.jenalwaysmynature <alwaysmynature@...> wrote: Jen, I simply do not know how you do it!! I am humbled by what you have on your plate. I am a quite a bit older mom, with only one child left at home, ds13, who I am afraid of. and "needs" "wants" his way when he wants something. It seems like the very first time he gets something, he EXPECTS, it whenever he wants it and he thinks I am the one being unreasonable and he will do absolutely anything to make me. I'm under a 100

pds and he's topping over 140 pds and strong. I don't know what you daughter's dx is but can you get respite or housekeeping services through an agency to help you? I have to go through the mental health system because of my son's dx so it is more difficult to get services. I paid out of pocket for respite and the mental health system pays for the behaviorist. Still waiting on the Dr. to put the correct code so I can get what he needs with the right type of people. I hate to say it, but maybe another medication might help. My son was/is so bad and I so desperately wanted to keep him at home because he could not survive the other alternatives, that I was willing to try anything. Depakote helps my son's aggression...i've heard others say it made theirs aggressive, but I think it helps many more than it doesn't. My thoughts are with you...hang in best you can. Judy

> >>I keep on coming back to this - there simply are times that things cannot > >>be explained or social storied away. Yesterday Hope tried to gouge out my > >>eyes with a

pencil because I wouldn't give her money (i didn't have any) > >>to walk down to the store and get candy. > > I am sorry but that is not sensory - that is just willful bad behavior. << > > It may be, but I think you are too busy looking at the behaviour and not > thinking about what her thought processes may be which lead up to it. > > First, I doubt that she really has any understanding of what she is doing, > in terms of the hurt/damage she could cause to you. What she has learnt > though, is that she needs to go to extremes to get your attention. You need > to do a lot of work with her about how her actions can hurt someone - and > this is where a social story, which you come back to again and again, could > be useful. Social stories are not things which you do once, they have to be > repeated over and

over. > > Secondly, *why* did she think you might give her money and allow her to buy > sweets? You must have done it in the past - perhaps for the last couple of > weeks you have done that on that particular day? She is so desperate to find > 'rules' in what you do, it will only take repeating something once or twice > for her to make a rule about it ("on Tuesdays mum gives me money to buy > sweets"), and then if you don't 'keep' that rule, then she needs to > communicate to you that you have broken it. It doesn't matter that you don't > know what the rule is (she will not realise that you don't anyway). She is > far too young to be able to verbalise her distress at the rule being broken, > so she communicates in a more primitive way. > > Try to see what led up to the 'behaviour', then you are more likely to find >

a way to help her understand the way the world works. > > Another thing you need to work on with her is appropriate expression of > emotions and attribution of feelings. > > > > > > > > > Life may not be the party we asked for - but while we're here, let's dance! > > > > --------------------------------- > Luggage? GPS? Comic books? > Check out fitting gifts for grads at Search. > Life may not be the party we asked for - but while we're here, let's dance!

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June 17, 2007

I don't have a problem with Hope being Autistic. I adore her - I truly do. I consider myself fairly knowledgeable about Autism, and have been both her biggest fan and her biggest advocate. What I am unable to do - is be all things to everyone. I know that she is capable of different behavior - because she has done it before! I cannot have three lives - caring for the needs of three girls who have completely opposite needs.I also cannot make everything the same - routine - because there is only one me. There are days when I haven't eaten all day - I need to pick up the girls, then maybe stop for gas (because I am on empty, and desperately need to get my sugar up because I am hypoglycemic). I *know* that these deviations from routine throw her into a tizzy - but there aren't any options - I have turned these situations in my mind over and over - and there aren't other options. I don't have anyone here - so that I could

leave early, and take care of the gas, and all of that before the day starts so it won't upset her. I rarely if ever take a lunch and being on a tight budget and exhausted at day end so I don't make my own lunch to take, if I don't have cash to order with everyone else - I don't eat. I always try to stash hard candies in my purse because I am "pre diabetic" and hypoglycemic - but the kids get in my purse and take them - so when my sugar is way out of control I have no choice but to deviate from routine.It may sound as though I have lots of options, but really they just aren't there. My entire thing is that I KNOW what my daughter is capable of - and I know that there are times when the ADD issue with her shows its ugly face along with the mood swings and she acts out. At the end of each day when we do our behavior charts, we go to the calender, so that she can see what will happen the next day - ie - everyone has to go to Dr. 's office

tomorrow for an appointment, Molly will pick you up from school and I will come and get all of you. You MUST get a snack before we leave because Mommy hasn't been paid yet, and I don't have any money. When you throw a fit, I can't change the money situation and it isn't doing any good. Frequently just trying to tell her what to expect results in my being bitten, kicked or told that she hopes I die in my sleep. This is not autistic behavior - as most of it has started in the past year. When she was non verbal and couldn't go to day care and I had to take her into the office with me, yes she had violence issues, but they were not just mean like they are now. It is almost like she realizes that I truly don't have a lot of options, other than to not react but calmly either restrain her - which is horrible for her in a sensory way - but I have to protect myself and the other kids - or ignore her. I won't swat her butt - unless she

runs out into the street - which she no longer does - we have ingrained the whole crossing the street thing into her.Honestly, I can appreciate much of what you are saying, i wouldn't put it out there if I wasn't willing to try whatever I thought was going to work! What is difficult to convey via email is that a situation with a mom and support who has one or two children is completely different from being the wife of a merchant mariner, with four kids two ASD, two with severe ADHD and LD. Trying to be in control, and all things to all people, while trying to move cross country, having no way to get in touch with my husband and the only friends I have are out of state - well things get different. Truly the only constant in life is change, and I WAS able to teach my teenaged ASD daughter to be able to deal with it. Molly has severe low functioning Aspergers Syndrome, and while things do frequently get difficult for her, we role played

and social storied (although I didn't know that there was such a thing) - It was a gut level thing with me - we called it the game of what if. Where I would throw out different scenarios to her. I walked my ASD child through being molested, being abused emotionally by a stepmother, her brother's arrest directly because he "knew" about the molestation but didn't know what to do - so he started acting out.... So, I am not saying I am super mom - far from it actually - considering that I have RAGING ADD - along with mild bipolar disorder, I think that I handle things as well as can be considered.I am sure that you - like most people - look at advise and take what applies and leave the rest behind. So, when I examine the sound advice that you have given me (and YES I DO APPRECIATE IT!!!!), but when there are things that I know for a fact won't work due to circumstances that I can't change - then I guess maybe I need to just vent and getting

frustrated and angry (because I am only human).I truly hope that I don't come off as being a whiner - or just complaining without being willing to change - because I am willing. At the same time, I cannot make something happen when it is beyond my control - and recognizing that something is beyond my control - I think is half the battle.I truly admire you - you really seem to have a handle on all of this - and that is amazing!!! But even when you have "the" answers, there are circumstances where you have 5-6 people who all have different diagnoses and different basic needs - those answers have to be modified, have to change - because I could technically work around Hope's issues, I could make everything mostly regimented, yet by doing so - not only are my other kids needs not being met, I would be an exhausted nervous wreck, because then it becomes the other two kids acting up - well - you get the picture.I really don't want to be

the source of any bad feelings, It truly is a testament to how much this group has helped me that I feel safe enough to just vent - un moderated - to you guys!!! Soemtimes there are things that seem so basic, so innate that "you" wonder why people just don't do it.... I have to look at the big picture and work inwards to the details - because the chaos has to subside, it just has to. I have been losing my temper and screaming - and I hate that!!! I lay awake crying at night because I realize how destructive words can be - and I rarely lose control -but this past month I am losing control a lot. My mom lives out here - but she all of a sudden decides that "her life is breaking apart into little pieces" and takes off a bunch of work. I adore my mom - she is awesome -but she is one of those people who think that if everyone would just do things her way it would all be just fine - and she thinks that I am being lazy or stupid or whatever,

because I haven't been able to do what she is able to do. So, she won't help or come over to give me 10 minutes of peace or anything. All of my friends (who were the smart ones lol) already got the heck outta dodge and left California. Hope's godmother - will take her for around a 1/2 day once or twice a month - so I can get things done, but that leaves me with Sara the Screamer and Molly who the more the screaming increases, the more she withdraws and gets very passive aggressive. Being in high school - she needs to have time to herself - and time with her friends, but I need her help - so there is another can of worms.I honestly don't know that there are any answers. But I sure am willing to look through and grab techniques that may work and utilize them!!! I have been researching social stories to see how they may work for Hope - since what I did with my older daughter (before i had ever heard of such a thing) just makes Hope

angry and tantrum - usually hurting me or someone else. She just won't listen at all. I keep on trying, but all it does is cause increased violence. I am sure it is my fault and I am doing something wrong. I recently had to tell the girls that they are to protect themselves - when Hope attacks them. I just know that someone here is going to be hurt badly - and I will end up in Jail or worse - it truly is that bad. I was trying just now to talk to hope because she wanted to go to the neighbors, but all she has done all day is scream and hurt everyone. She is tired. So, i said to her - that she and I needed to make a plan for her to be rested before she went over there, because she could hurt Sadie (a dog she loves), or scare our neighbors if she went over there and got mean. Her response (10 minutes ago in the middle of me writing this email), was to kick molly and try to bite her in the face, to slap Sara acros

sthe face, then when I grabbed her and tried to explain the whole deal to her she bit my chair swung at me - and then grabbed a little bookshelf Sara made and swung it against the wall - denting the wall and this is a rental. She has been screaming and yelling and trying to hurt people since I got online. She just told me that I don't care about her - told her sister to go die - and now she is screaming at the top of her lungs again. Why? Because I tried to explain to her how if she went to Sadie's right now, she will scare her and then maybe sadie wouldn't want to play anymore.I can't even get through a full sentence if the response isn't sure Hope go do that. This is willfull behavior. All any of us in this house can do is protect ourselves from serious injury and for me to believe that I am the biggest failure as a mother in the entire world. I know services are supposed to make a difference - I really believed

that they would - but thus far - nothing. My husband finally got a job saving us from bankruptcy and ensuring that we could get out of California and try to build a slower paced life for our family - and the chaos continues to increase.If you actually got through this congrats - I am not even sure I am making sense - the screaming has been unabated, and now Sara is screaming at the top of her lungs and Molly is screaming, plus Hope.I have to go and see how much blood is involved this time.jennifer Rowell <nancy@...> wrote: Jen, I know you are finding this all tough but please try to see that Hope is doing her best not to be autistic. >>Here is the kicker and why I refuse to believe that a good portion of this >>is in fact willfull. I just went to her IEP meeting - and guess what?? >>She is no longer aggressive at school - she CAN self regulate!!! << It is *so* common for ASD kids to do the 'pretending to be normal' thing at school. But they use up every ounce of energy they have doing so that they just can't at home. It is physically and mentally exhausting for them. They have to have somewhere to let out all that pent-up emotion and that is somewhere they feel safe, ie at home. Believe me this happens over and over, it is not just Hope. That is how ASD is. With some it comes out as anger, with others it can be withdrawal. Schedule in 'downtime' after school -

this may have to be 2 or more hours when no-one has any expectations of her. She is not expected to interact with anyone (family or otherwise), but just gets to 'chill' in whatever way she finds most helpful. My son used to watch videos. When my husband gets home it can take a whole weekend before he is able to listen or talk to me. >>She has the language skills,<< Don't think that because she can talk that her speech and understanding are 'normal'. She will have on-going problems with receptive and expressive language, and receptive and expressive prosody. She will NOT have the same skills as other children her age. She will also be way behind in her emotional development - learning to recognise and correctly express her own emotions. Life may not be the party we asked for - but while we're here, let's dance!

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June 17, 2007

,I completely agree with what you are saying, in my previous email I explained some of the chaotic reasons why some of these things occasionally become difficult to do - ie - the constant appointments and hubby being gone mean that I MUST not leave much earlier than absolutely necessary for appointments, most evenings despite my best efforts I cannot get everyone settled until 1-2 am despite the absolute routines at night - apparently hope has incorporated hurting me or someone else until there is blood involved into her nightly routine. I don't know how to explain this - I have used pecs and visual schedules to no avail.The pocket money thing would be perfect IF we didn't live in Southern California with our output being around 700 dollars a month more than we make, until we move I can't do so. However, I totally agree with you on this. It will make a difference and I can't wait until I can implement these things.We will

continue with the visual schedule, I just don't know how to take out of the routine, Hope's nightly rages - she won't stop until either me or her are bleeding. It is awful. Somehow she has made this her routine and I don't know how to stop it. I have completely cut the kids off from being in my bedroom - which just cuts me to the quick, but if I let them do it one night, they want to be in there every night, and since I am barely getting 4 hours of sleep per night, getting kicked out of my bed is not helping my disposition.If I could get them into bed and settled before 1-2am, then I could have time to make the snacks - I prefer not to pay a bunch of money. There have been times I have asked (no begged) Molly to do this for me - but it ends up being such a horrible experience with her being so cruel to me that I won't ask her anymore. Recently, on appointment days - she just "disappears" and I spend all of the time, I could have

been spending going to the house and preparing snacks - looking the streets for her - it undermines me.I feel as though the children constantly undermine me (Sara and Molly). they participate in causing chaos. I have taken away privileges, taken away playtimes, restricted them, and it makes it worse. Part of this is that they all have different diagnoses - and different needs, and to meet the needs of one is to go opposite of the needs of the rest of them.I am quite sure that it can be done, but short of having 36 hours in a day and only requiring one hour of sleep per night, I don't see that I can do it. I am in survival mode - and I "should" be taking care of me - but that is laughable. I have no support, even using respite hours, still leaves me with two more demanding girls who get angry if I do anything for me without if being about them. In order to function properly I need at least 1-2 hours of downtime and 8-10

hours of sleep. Not only do I have ADD, BP (mild), and OCD - BUT I also have Fibromyalgia and arthritis. I am in horrendous pain constantly, and despite my best efforts at exercising, all it does is cause more pain - which I have been told is aggravated by stress. Short of running away from home and checking myself into the "nut ward" there is no calm, there is no time for me - there is only the insanity I deal with on an hourly basis.I have a four bedroom house filled with crap - obviously I am a crappy housekeeper, and the kids will do everything half assed (despite having the equivalent of 15 minutes per day of chores) so that I will be frustrated and o it myself. I am continuing to work 50-60 hours per week (much of it from home as I can), I am in the middle of taking care of the loan, and escrow, and trying by myself to pack - there isn't any money to hire assistance, and I have no friends here nor will my mother help.I HATE

whiners and people who make excuses - yet, it feels like that is what I am doing - I don't see any way out of it - I continue to try to do the things I feel would be helpful and are possible, to no avail.I "should" give notice now and concentrate and doing what needs to be done, but if I do so, there will not be any money to pay the bills... DH was out of work for three months and i am still playing catch up - I owe the daycare provider 900 dollars, thank God they allowed the girls to stay through the end of the year and hubby made payment arrangements. I don't honestly see any answers presenting them, I see lots of good solutions, but no way for me to implement them. It really makes me feel like I am a total loser, and unable to manage the most basic of things, and so be it. I would happily hand over this situation to you or anyone else I thought could make it better - but it won't be better. i send the girls to

's (hope's godmothers) and then have to endure her telling me how perfect they are at her house, and polite and how they are never asked more than once to do anything. One more incident where I may as well tattoo failure across my forehead. This may well be a character defect - mine - and I am sure it is all somehow my fault. We could start with the fact that I allowed my children to be poisoned by mercury injections - when they (especially Hope) lack the enzyme needed to detoxify their own bodies. This being a proven fact of some kids with autism. Hope has so many physical issues as well - Autistic Colitis and GERD - now I don't believe that vaccinations cause autism, however, I do know for a fact, that there are certain children - particularly medically fragile infants, lacking the enzyme needed to detoxify their own bodies, that are inundated by toxins - vaccinations, cleaning chemicals, environmental pollution - and it makes it all

so much worse.I am at my wits end - and I blame myself primarily. Oh I am sure that some organizational guru could come in here and fix it all right up! But I am not that person, I am one person - very very flawed, and barely hanging onto my sanity. I am not trying to make Hope not autistic. As a rule, I adore autistic children, the same as I adore Down's children. I spent years volunteering with these children, I did pet/dog therapy with them when I was active in rescue, I worked in Recreation Therapy for years. What I see with Hope is not the autism, it is willfull behavior, and it is understanding that I can only take so much - she perseverates on what she thinks she wants / needs - and only when I am falling apart, crying, in pain and begging (yes how undignified) for them to just stop - to just please walk away from each other - that I will do anything just to make something give - and she gets her way. No I

shouldn't do it - but at that point, I become terrified that I am just going to haul off and slap one of them that I have to get away from the situation...If that makes me a bad person - then I plead guilty. One person can only take so much.J Rowell <nancy@...> wrote: Jen, Just some final thoughts (and I too know what it is like to be a 'single' mum, my husband has either worked away from home or had a long commute during my kids entire lives - 21 years). 1. Try to

make as much as possible visual rather than using spoken words. Those with ASD are often slower at processing speech and can't keep up with what is being said. Also, if it is written down (as pictures or words) then it will be the same every time. With the best will in the world when speaking you cannot repeat exactly what you've said before, but that means new processing every time for someone with ASD. Much better if they have the consistentcy and predictablility of visual. 2. If an appointment means that a meal may be late, then either have a snack before you go or take something with you. Fruit is a good idea for lots of reasons. Don't be buying stuff when you are out. Make sure that 'snack time' is included on your visual schedule, so Hope knows it will happen. Using velcro pictures for a schedule means you can make each day as varied as it needs to be. 3. Take books, toys or even game boys with

you to appointments to stop them getting cranky. 4. Introduce pocket money. Obviously this has to be an amount you can afford *every* week. I don't know how much sweets cost, but maybe a couple of dollars every week would be suitable for Hope. She can spend it anytime during the week, but you make it clear that is all she gets. It might be easier to start with a daily amount (a dime or two for instance) until she gets used to the idea. The aim is to make things as ordered and predictable as possible for Hope, so she can start to make sense of our confusing world, without restricting everyone's lives. It's not easy, nor are there overnight solutions. As with everything in life, it has to be worked at. I wish you all the best. Life may not be the party we asked for - but while we're here, let's dance!

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June 18, 2007

Nikki,I guess we are all in this together. The Regional Center Doctor told me straight out that since this is such a new diagnosis that all of us - clinicians, doctors, parents, therapists - are flying blind!This is so true. Sure, we have a lot of "facts" so far, but in my experience, when something is new - it is just as likely that all of those facts will be overturned and changed - look at the refrigerator mother theory!!!! That persisted in many groups until the early 80s - late 70s! Now nobody would say that having a child with autism means that your child should be removed from your care and put into an institution to be forced to act out their acceptance of you causing their autism by emotionally withdrawing from them! So - none of us know - we have many physical things we are finding out - however, the government keeps on gagging and refuting valid new research playing the whole CYA thing.I know somehow,

that this too shall pass, I am not putting all my hope into this move, but I think it will be a good start, it will give us the ability to have resources (financial and time) to start over in a lot of ways.Here are big hugs - this violence thing is the hardest kind of chaos and hurt that any mother could deal with. It feels a lot like failure and a lot like rejection.JenNikole Benson <eleteach03@...> wrote: I totally understand where you are coming from with your feelings. My son is pretty much the same

way, he threatens to runaway, hit me, say the most hurtful and mean things when something doesn't go his way. I do not know what to do at times. Social stories just do not seem to work with him any more. Hope things go well for you today. nikkiJen <diegowench > wrote: I keep on coming back to this - there simply are times that things cannot be explained or social storied away. Yesterday Hope tried to gouge out my eyes with a pencil because I wouldn't give her money (i didn't have any) to walk down to the store and get candy. I am sorry but that is not sensory - that is just willful bad behavior. It is testament to how often I deal with it that it didn't even phase me - I didn't really even react other than to take the

pencil away from her. There are times that I am convinced that I live in hell. Jen Mom to four special kids Life may not be the party we asked for - but while we're here, let's dance! Need a vacation? Get great deals to amazing places on Travel. Food fight? Enjoy some healthy debatein the Answers Food Drink Q & A. Life may not be the party we asked for - but while we're here, let's dance!

Luggage? GPS? Comic books?

Check out fitting gifts for grads at Search.

June 18, 2007

Dear

Thanks so much for all the ideas. There

great and usually what I need to remember to do for my Maggie. Sometimes we

get so caught up in the drama of the moment that we forget to use the tools we

have. I always look forward to your responses.

Gretchen Archinal

From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of Rowell

Sent: Sunday, June 17, 2007 11:33

AM

Autism and Aspergers Treatment

Subject: Re:

Manipulation et al

Jen,

I know you are finding this all tough but please try to see that Hope is

doing her best not to be autistic.

>>Here is the kicker and why I refuse to believe that a good portion of

this

>>is in fact willfull. I just went to her IEP meeting - and guess what??

>>She is no longer aggressive at school - she CAN self regulate!!!

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