Re: Not sure how much more I can take

[Guest guest]

Hi.

I don't have any advice, really, except that that was how it was for us, too. It was our oldest of 4 as well. he he.

It got to the point that when the kids would come down in the morn, everyone learned to not talk. No one wanted to set him off. It was like prison.

I think it may be quite normal, sadly.

This was one of our issues, and eventually yanked him out of school. This helped things 1000%!! I'm not pushing doing that, but for us, it was the stress, etc of school that made "life" hard for him to handle. So,,,,what do you do when you are out of control and can't deal with the feelings you are feeling? You strike out at those around you.

Good luck.

I'm sure you'll get wonderful help.

Robin

From: amybishop92 <amybishop92@...>Subject: ( ) Not sure how much more I can take Date: Thursday, January 8, 2009, 10:38 AM

Hi all, I am new here and hate to bombard you all with my venting so quickly but I am feeling especially frusterated this morning. My 12 year old daughter was recently diagnosed. I have learned so much information on the disorder. The disorder I can accept fully, and feel much more impowered putting a name to her different behaviors. However the miss behavior and meltdowns I am not sure I can take much more of. She is the oldest of 4 kids and is especially hard on one of her brothers. Everything he does sets her off. It is not fair to him. I feel it tearing him down. I can't take us all walking on egg shells. I just don't know what to do. My patience only goes so far and I feel I am at the end. I am broken. How can we all go another 6 years or so like this? Thank you.

[Guest guest]

Thank you so much for all the wonderful advice and wisdom. I will

take all of it to heart. I needed to hear it.

Currently she is not receiving a lot of help. She has a counselor in

school, and he seems to be on top of it. The psychologist we were

talking to recommended that she doesn't get " outside " help, for it

may put a label on her. She said to concentrate on just getting her

through school since this is where her life is right now. She

actually does quite well at school. However she has this fear about

asking question, feeling she will appear stupid or get made fun

(which she does) So that's the biggest thing we are dealing with

right now as far as school goes.

Home is a total different story. She can go from 0 - 10 over the

most tiny thing. When she is overwhelmed there is absolutely no

rationalizing with her. When she is in these moods it is best if I

send my other kids in my room and lock the door. I have worried

about her hurting herself, myself or her siblings during these

rages. It is very frightening. I fear that since she is getting

older and bigger it is only going to get worse. I am thinking she

needs more than a school counselor and could possible need to be on

some sort of medication. Especially since she has threatened killing

herself.

Are these all common problems with Aspey children? My hat goes off

to all of you that are going through this. This is undoubtedly the

most challenging ordeal I have ever been through. I feel horrible

for her. I can't imagine what must be going on in her head. I also

feel sorry for all of us living with her and the huge emotional

strain it puts on everyone. Is there any light out there? Please

tell me there is hope somewhere.

>

> Hi all, I am new here and hate to bombard you all with my venting

so

> quickly but I am feeling especially frusterated this morning.

>

> My 12 year old daughter was recently diagnosed. I have learned so

much

> information on the disorder. The disorder I can accept fully, and

feel

> much more impowered putting a name to her different behaviors.

However

> the miss behavior and meltdowns I am not sure I can take much more

of.

> She is the oldest of 4 kids and is especially hard on one of her

> brothers. Everything he does sets her off. It is not fair to

him. I

> feel it tearing him down. I can't take us all walking on egg

shells.

> I just don't know what to do. My patience only goes so far and I

feel

> I am at the end. I am broken. How can we all go another 6 years

or so

> like this?

>

> Thank you.

>

[Guest guest]

On Sep 6, 1:29am, " amybishop92 " wrote:

} My 12 year old daughter was recently diagnosed. I have learned so much=20

} information on the disorder. The disorder I can accept fully, and feel=20

} much more impowered putting a name to her different behaviors. However=20

} the miss behavior and meltdowns I am not sure I can take much more of.=20=20

} She is the oldest of 4 kids and is especially hard on one of her=20

} brothers. Everything he does sets her off. It is not fair to him. I=20

} feel it tearing him down. I can't take us all walking on egg shells.=20=20

} I just don't know what to do. My patience only goes so far and I feel=20

} I am at the end. I am broken. How can we all go another 6 years or so=20

} like this?=20=20

Try not to think of it being another 6 years or so like this. She was

only recently diagnosed, you are still figuring things out. Things can

and will change. Are you getting any kind of help? I have an only

child so I don't have any concrete advice, but I can imagine how crushing

it must be to think things will never get any better.

Willa

[Guest guest]

Hi Amy,

Let me assure you that there is definitly hope. We live in a time

when Aspergers and Autism are understood more that ever in the past.

And there are a lot of us out here that are dealing with the same

things so we can help each other.

I have a few thoughts for you. First regarding the rages. One thing

that I noticed with my 10 year old AS son is that he has an

extreme " fight/flight " response to any stress, frustration, anxiety,

injury, hurt feelings, fear etc. He goes imediately into fight mode

and will lash out at anyone and anything around. He can get nearly

hysterical over the silliest things. Once I understood what was

causing this behavior I started to understand that the way to deal

with it was not with discipline but with affection and assurance. He

is lashing out because he is upset and scared. He needs to be

reassured that it will all be okay. It doesn't stop the reaction but

it does help him calm down faster and lets him know that he can't

drive us away with his behavior. We will always be there for him.

Obviously I can't speak for your daughter and I don't know if her

reasons or reactions are at all the same I am mostly trying to give

you an understanding that you are not alone and that this could

definitely be the AS coming out. My son will also talk about killing

people but this is a part of his lashing out. We are working with a

therapist now to get him to use different words when he is upset. He

is very smart and logical and he understands when he is rational that

this is not good. This is merely his lashing out at someone.

As many previous posts and threads have talked about it is not

uncommon for some kids to be able to keep it together at school only

to lose it at home. This is because they feel safer there and

because there is only so much that they can bottle up before it all

explodes. If you can work with the school to make things easier

there it may help with the home life also. It may mean that you need

to adjust things at home so she can difuse her stress more. Does she

need alone time or a quiet space? What is triggering the rage. Try

to minimize the triggers.

I was really discusted when I read what your psycologist said. I

would not continue to see a Dr that would rather see a child go

untreated for a disorder than be " labeled " . Try to find a child

psychiatrist that can do a full nueropsycological evaluation on your

daughter and get the proper treatment. If you are near enought to a

city that has a Childrens Hospital that would be a good place to

start looking.

You will get through this. Don't be afraid of the label or diagnosis

or whatever you want to call it. I helps to know what you are

dealing with and why she is the way she is. It will take time to

sort things out and it will continue to be a challenge but challenges

make us stronger.

Hope this helps a little. We have all been where you are now.

Vickie

> >

> > Hi all, I am new here and hate to bombard you all with my venting

> so

> > quickly but I am feeling especially frusterated this morning.

> >

> > My 12 year old daughter was recently diagnosed. I have learned

so

> much

> > information on the disorder. The disorder I can accept fully,

and

> feel

> > much more impowered putting a name to her different behaviors.

> However

> > the miss behavior and meltdowns I am not sure I can take much

more

> of.

> > She is the oldest of 4 kids and is especially hard on one of her

> > brothers. Everything he does sets her off. It is not fair to

> him. I

> > feel it tearing him down. I can't take us all walking on egg

> shells.

> > I just don't know what to do. My patience only goes so far and I

> feel

> > I am at the end. I am broken. How can we all go another 6 years

> or so

> > like this?

> >

> > Thank you.

> >

>

[Guest guest]

I have found my son's " label " very helpful in getting services and

support from the school. I decided getting him the help he needed

was more important than any " label " they could slap on him.

Your experience with the psychologist was interesting to me. My son

was diagnosed when he was 5. He doesn't see a psychologist but was

having some anger issues last year. So, I thought I'd take him to a

psychologist to see if there were any underlying issues and to help

him self-regulate so he didn't get to the blow up point. The

psychologist I took him to - who was supposed to be an expert on

Asperger's and High Functioning Autism - told me that he wasn't sure

my son had it and that he was just a " weird " child. I was absolutely

speechless. I know what my son's diagnosis is and I'm not

questioning it because I know that the pediatric neurologist (the

best in the area) was right. Needless to say, I didn't take him back.

But what was interesting is how your story somewhat was similar...

Again, I say who cares about a label if it helps your child get the

help he/she needs.

> >

> > Hi all, I am new here and hate to bombard you all with my venting

> so

> > quickly but I am feeling especially frusterated this morning.

> >

> > My 12 year old daughter was recently diagnosed. I have learned

so

> much

> > information on the disorder. The disorder I can accept fully,

and

> feel

> > much more impowered putting a name to her different behaviors.

> However

> > the miss behavior and meltdowns I am not sure I can take much

more

> of.

> > She is the oldest of 4 kids and is especially hard on one of her

> > brothers. Everything he does sets her off. It is not fair to

> him. I

> > feel it tearing him down. I can't take us all walking on egg

> shells.

> > I just don't know what to do. My patience only goes so far and I

> feel

> > I am at the end. I am broken. How can we all go another 6 years

> or so

> > like this?

> >

> > Thank you.

> >

>

[Guest guest]

Hope this helps, but my son was crabby and irritable from about 12

to 15. Our whole house was walking on eggshells for awhile. It was

horrible.

From what I can tell from other postings, this seems to be typical

behavior for a young teenager on the spectrum. This behaviour got

better as we got our child involved in Aikido and it absolutely

stopped when we moved him to a new school.

Of course, some of this can be attributed to typical teenage angst.

I now realize that at the time that my son was really frustrated at

what was going on at school, especially at the social interactions

and noise outside of the classroom. The way that he was used to act

and talk to his peers just didn't work for him anymore. He was smart

enough to know he was different somehow and he felt like he was some

kind of weird freak. He still loved the same old games and tv shows,

but his friends had new interests. He just couldn't figure out what

to say or how to act. He wasn't ready to talk to girls. So he would

struggle to keep it together at school & then would crash when he

got home. His teachers were a big part of the problem, too. Some

teachers were great, but a few just did not understand that my son

really had a disability, that he could not follow verbal

instructions and that he wasn't deliberately not doing classwork.

At this age, your daughter's classmates are probably focused on

their appearance, boys, fashion, music, shopping, and so on, while

your daughter could care less. See if you can find some kind of

outside interest or social group where your daughter can do

something she really enjoys and make new friends that have similar

interests. Look for opportunities to spell out what is going on on

TV shows to explain the body language or subtext of a conversation.

our kids need to be told a lot of things that other kids can figure

out on their own.

Someone explained to me that our kids are really about 2/3 of their

actual age, so someone with AS who is 15 may very well have the

interests and maturity of a 10 year old.

It will get better.

[Guest guest]

> The psychologist we were

> talking to recommended that she doesn't get " outside " help, for it

> may put a label on her. She said to concentrate on just getting her

> through school since this is where her life is right now. She

> actually does quite well at school.

This doesn't make much sense to those of us who have been there. Is

this psychologist doing anything for you that is actually helpful?

> I fear that since she is getting

> older and bigger it is only going to get worse. I am thinking she

> needs more than a school counselor and could possible need to be on

> some sort of medication. Especially since she has threatened killing

> herself.

I think you are right to at least want to check it out. Who did your

evaluation? Does the report have a recommendations section? That is

usually a good place to start when deciding " where to go next " .

> Are these all common problems with Aspey children?

Aspey children have some similarities, but they are all different.

That is, they don't all have the same symptoms, and some have multiple

neurological disorders. My son (I have a 14yo with Asperger) doesn't

have rages, but he does have verbal outbursts that are pretty intense

(just minus all the physical stuff, for the most part). You may want

to see what a psychiatrist thinks about your daughter maybe having

something in the mood disorder area.

> strain it puts on everyone. Is there any light out there? Please

> tell me there is hope somewhere.

Yes, Amy, there is hope. You won't have to live like this for 6

years. Just don't set yourself up for overwhelm by expecting instant

answers. It will take some work, including the work of finding

someone who can help. How do we do it? We just keep plugging.

Finding help is very hard and time-consuming. Many people say they

have experience working with Autistics but don't have a clue. But

hang in there; it will come!

And keep pushing the school. One of the big skills I've learned from

all this is how to push people without being offensive (at least I

sure try and have gotten better LOL)!

Ruth

[Guest guest]

You shouldn't be walking on egg shells exactly - maybe being a little more accommodating than the average family but I would not attempt to make every thing in life perfect for one person's sensory issues or unrealistic expectations. It doesn't help that person learn to deal with the problems. I have a friend whose AS dd is in her early 20's. When she gets upset at how "loudly" people are breathing, she goes to her room. It's her issue and people can't stop breathing to make her happy. lol.

In general I would take that attitude towards issues but you didn't specify what problems are going on exactly. So it's hard to say what way to deal with it. I would take each situation as unique and work on it. For instance, my ds (now 20 yo, hfa) used to only eat food that was cold when he was a toddler. We could have spent his whole life cooling off everything he ate. For a while we were doing just that! But eventually I got the idea to slowly (over months) warm up what he was eating. Eventually, he learned to eat hot food like anyone else and it was no longer a problem. So I would look at each situation and figure out how you might help resolve the problem and teach her a better solution. Sometimes there is no solution or she isn't going to adapt so (like the breathing example) you might say, "If it bothers you that much, you should go to your room." She should learn to take a "timeout" if something is so bothersome that it is making her crazy.

I do have a lot of problems currently between my two younger ds's. One is 9 yo, one is 12 yo (hfa) and they both annoy eachother. You know the drill, one is making noises, the other can't stand it any longer! Screaming ensues...name calling, etc. I will usually tell my hfa ds not to make noises because they are annoying and bothersome. But if he can't seem to stop and they are both getting out of hand, I will just say, "Time to get of the computers, now!" and make them both go do something different. I can't stop my ds from making the noises but if I change his surroundings and what he is doing, it usually changes his need to do it. Or at the least, moves him to another area where we don't have to hear it as much.

RoxannaYou're UniqueJust like everyone else...

( ) Not sure how much more I can take

Hi all, I am new here and hate to bombard you all with my venting so quickly but I am feeling especially frusterated this morning. My 12 year old daughter was recently diagnosed. I have learned so much information on the disorder. The disorder I can accept fully, and feel much more impowered putting a name to her different behaviors. However the miss behavior and meltdowns I am not sure I can take much more of. She is the oldest of 4 kids and is especially hard on one of her brothers. Everything he does sets her off. It is not fair to him. I feel it tearing him down. I can't take us all walking on egg shells. I just don't know what to do. My patience only goes so far and I feel I am at the end. I am broken. How can we all go another 6 years or so like this? Thank you.

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[Guest guest]

There is hope, most certainly. First I would get rid of the psychologist you are working with. The idea that getting her labeled is going to be a problem is ridiculous. She is already having problems, already getting teased, already her anxiety level at school is such that she cannot ask questions. In return, her stress levels are elevated and she is bringing her bad mood to the home where she is threatening to kill herself and terrorizing all of her siblings. And this psychologist is afraid she will be "labeled?" I think that would be the least of her problems at this point and frankly, getting labeled might actually help reverse this backwards path she's on!

Request, in writing, a full educational evaluation from the school. You WANT a label, you want her to have a 504 or an IEP with appropriate supports in the classroom. Once her school life is bearable, I bet you will see a great improvement at home and in her attitude overall!! You'd be surprised at how much school can affect their outlook. Remember, going to school is like a job - like we go to work. If you went to work every day and had bad experiences where you are teased, lost, anxiety ridden...would you love work? Would you do a good job? Would you come home smiling?

RoxannaYou're UniqueJust like everyone else...

( ) Re: Not sure how much more I can take

Thank you so much for all the wonderful advice and wisdom. I will take all of it to heart. I needed to hear it. Currently she is not receiving a lot of help. She has a counselor in school, and he seems to be on top of it. The psychologist we were talking to recommended that she doesn't get "outside" help, for it may put a label on her. She said to concentrate on just getting her through school since this is where her life is right now. She actually does quite well at school. However she has this fear about asking question, feeling she will appear stupid or get made fun (which she does) So that's the biggest thing we are dealing with right now as far as school goes. Home is a total different story. She can go from 0 - 10 over the most tiny thing. When she is overwhelmed there is absolutely no rationalizing with her. When she is in these moods it is best if I send my other kids in my room and lock the door. I have worried about her hurting herself, myself or her siblings during these rages. It is very frightening. I fear that since she is getting older and bigger it is only going to get worse. I am thinking she needs more than a school counselor and could possible need to be on some sort of medication. Especially since she has threatened killing herself. Are these all common problems with Aspey children? My hat goes off to all of you that are going through this. This is undoubtedly the most challenging ordeal I have ever been through. I feel horrible for her. I can't imagine what must be going on in her head. I also feel sorry for all of us living with her and the huge emotional strain it puts on everyone. Is there any light out there? Please tell me there is hope somewhere. >> Hi all, I am new here and hate to bombard you all with my venting so > quickly but I am feeling especially frusterated this morning. > > My 12 year old daughter was recently diagnosed. I have learned so much > information on the disorder. The disorder I can accept fully, and feel > much more impowered putting a name to her different behaviors. However > the miss behavior and meltdowns I am not sure I can take much more of. > She is the oldest of 4 kids and is especially hard on one of her > brothers. Everything he does sets her off. It is not fair to him. I > feel it tearing him down. I can't take us all walking on egg shells. > I just don't know what to do. My patience only goes so far and I feel > I am at the end. I am broken. How can we all go another 6 years or so > like this? > > Thank you.>

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[Guest guest]

> The

> psychologist I took him to - who was supposed to be an expert on

> Asperger's and High Functioning Autism - told me that he wasn't sure

> my son had it and that he was just a " weird " child. I was absolutely

> speechless. I know what my son's diagnosis is and I'm not

> questioning it because I know that the pediatric neurologist (the

> best in the area) was right. Needless to say, I didn't take him back.

LOL. I'm glad I'm not the only one who has experiences like this. I

had this type of experience with a psychiatrist that was supposed to

have a specialty in Asperger/HFA. She thought maybe he had a

personality disorder instead. Not quite as bad as simply saying your

child is " just weird " LOL. I'm sorry, I hope you can see the humor in

this and aren't offended.

I actually kept going to her because I wasn't asking for a dx and

figured if she decided to make it something different herself--it

wasn't anything I ever had to share with anyone else. And she

actually was very good at working with him and figuring out his

symptoms. In her case, I just chalk it up to the fact that

psychiatrists aren't exactly trained to dx the way neuropsychs are

(and I'm sure neurologists).

My son also has a dx from a very qualified professional whom I don't

doubt for a minute. Not to mention I've read the dx criteria for

myself and he definitely fits.

Ruth

[Guest guest]

I just wanted to thank you all for your wonderful wisdom. I was

feeling really low when I first posted. It's amazing the difference

in one bad day and then several good days. I feel hopeful again.

That is until the next bad day..

However we had a good weekend. My hubby has contacted the school to

get some recommendations on whom she might see. That is first on the

priority list. We both absolutely feel she needs more counseling,

also evaluated for depression and anxiety. I feel I gave you all

the impression that she is violent. She is absolutely verbally

aggresive, however I have never seen her be any more violent then any

other sibling behavior. However when she is " raging " she will kick

doors and throw items. I just don't want there to be a first time

that she really hurts somebody or herself.

From what I have read. There definately needs to be more balance in

the household. We should not have to revolve around her. She is

going to have to learn to live with the chaos and noise level of a

house of 6. I redecorated her room to make it a comfortable place

for her to go. However when she is overwhelmed she flat out refuses

to go to her room. She sees it as being punished and as herself

losing the fight. So that is something we need to work on.

Both hubby and I are really trying to abosorb as much information as

possible. We have realised that up til the diagnoses we have done

basically everything wrong with her when it comes to behavior. We

have a lot of relearning to do. Already I can see a significant

improvement on how we are relating to her. Also she is acutally

showing a few signs of empathy and taking some (though small)

accountablity for her actions. Thanks again. I hope to be a big

part of this group. Your advice and kind words are a true blessing.