Feeling trapped sad hopeless frustrated/lost...LONG VENT

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Alien_Papa
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06 Nov 2010, 2:09 am

Mama_to_Grace wrote:
Sometimes I feel like my world is so bizarre no one would even believe it and then I think probably all of you here have similar lives. Sometimes I wonder-how did I get here? I feel so trapped sometimes-trapped by the rituals and rules and fears and stipulations. I'm not a person to feel sorry for myself but I am really feeling down.
:


Well I laughed out loud when I read this, because it's so true and so familiar, but I would never have the courage to post it.

My daughter complained so much about school, but she could never articulate any particular problems. I watched her class at recess in 2nd grade and saw this boy was constantly following her and she seemed extremely frustrated about trying to get away from him. The school excused all his behavior due to his unexplained unhappy history. So we left that school. But she was extremely unhappy at the next school too. The bullying was pretty incidental, somebody stuck out his tongue at her, or somebody didn't stand in their proper line spot, but she just hated when people didn't follow the rules. As a parent it's really hard to know the difference between when your kid is being victimized and when they are just being treated with customary schoolyard behavior.

My daughter complained for years about a stomach ache and her pediatrician always said there was no problem. The complaints faded over time and I forgot about them until there was a question about stomach aches on an autism diagnosis questionnaire.

A lot of my daughter's behavior seems to be driven by insecurity. It's not that she can't choose her clothes, get dressed etc... but she feels some comfort every time Daddy does something for her. It even seems like she invents choices where none really existed, just to have me make some decision for her. If I decline then she panics, not because the consequences are dire, but because she takes it as a personal rejection.

I don't remember how old your daughter is, but mine is 12, and she has done things in the past year to show her appreciation. Took a long time to get to this point. A couple of years ago I was almost in tears when she told me that she loved me because we had been through a some really difficult years, Recently she left a post-it on my computer saying: "I love you Daddy, Thank you for working so hard every day." Maybe it doesn't sound significant to I read it on the screen, but from a kid who rarely expresses any positive sentiment, it meant a lot to me.

Unfortunately that doesn't mean that she's not complaining every day about one thing or another. Over the summer things were going pretty well, but two months into the school year everything at school and home is deteriorating.

I'm not a big fan of "scheduling " and cognitive behavior therapy. My experience is that my daughter's primary focus was on her parents reaction. Everything is binary. Either Daddy loves her. Or not. Creating a schedule introduced criteria under which Daddy would not love her and she panicked.

All I can suggest from my experience is to give love unconditionally and then use whatever small influence that provides over your child's behavior.

My daughter talked constantly at 10-11 about not wanting to live anymore. I think there's another thread about this. It is really difficult and can persist for many years.

Thanks for sharing your similar experiences.



psychohist
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06 Nov 2010, 3:14 am

Mama_to_Grace, I know that you really love your daughter and want to do your best for her. It sounds to me like you are doing more than vent here - you want to know what you could do differently to make things better for her.

I think the key issue is that you are treating her as if she were neurotypical. That's perfectly understandable; you've been dealing with neurotypicals all your life. However, she is not neurotypical, so a lot of the things you end up not having the effects you expect. I'll go through your post and try to explain.

Mama_to_Grace wrote:
I wake in the morning, hop in the shower, while my daughter is asleep in my bed. When she wakes, the first thing she says (if it's a weekday) is "I'm sick. I Can't go to school." She tends to repeat this phrase over and over and has for two and a half years now. Does she think one day I'll say "you're right. You can stay Home"? I just try to be reassuring. I say "You're not sick. You'll have a fun day!" She knows this is bull&*@%, she hates school.

You are trying to be reassuring because, with a neurotypical daughter, it would show emotional support that would help her get through the day.

Aspies don't get the whole emotional use of language thing, though; they understand language as logical communication only. Telling her that she'll have a fun day when she knows she won't just increases her alienation, despite your good intentions, because it seems to indicate that your expectations are out of touch with her reality. As an aspie, it makes her feel even more alone, because it seems to her like even her own mother doesn't understand her situation - even though that's the opposite of your intent.

It would be better to tell her, "I know you hate school, but honey, you have to go anyway. I'll come get you as soon as school is over." That will let her know that you do understand her situation, helping her feel less alone.

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So she mopes around while I try to get her to eat (protest), I try to get her dressed (protest), I try to find socks she will wear (protest), I try to get her to brush her hair (ignoring me and then protest), then to brush teeth and go to the bathroom (more ignoring and protest). I am even more frustrated by those people with NT children who say "just leave with her undressed, she'll get the point". Are you kidding me? Do you know what that would do to our day/week/year/lives?!?!?!?

Heh. I'd be tempted to just leave her undressed and let her go to school that way, then tell the person who said that, "I followed your advice. How do you like the results?"

Seriously, though, I suspect the protests are at least in part trying to delay going to school. Telling her "you have to go anyway" will help emphasize its inevitability, and might help get her to resist a little less.

It will still take a long time to get her ready, though. It takes time to get any child ready, aspie or neurotypical.

Quote:
Then we go to class. Now some of you may think I am exaggerating but let me assure you with ALL SERIOUSNESS my daughter clings to me and can even drop to the floor and cling to my leg while the other students look on, confused, mouths agape, and parents give a look that says "I am SO glad that's not MY child!". She does this EVERY DAY. The teacher tries to be reassuring but let's face it-she doesn't know &$@^ about my daughter because how COULD you when you have NT children?!?!?!?!?

As you say, the teacher doesn't know any better. Nothing she can do about it, so no point in blaming her.

Quote:
Anyway, I drive off feeling everyday as most NEW moms do the first time they ever leave their precious child with someone else-will she be ok? Is she going to freak out today? Will they call me? These are not thoughts you should be having after you drop your 7 year old off at second grade. I have these thoughts EVERY SINGLE school day.

Those are thoughts you have because you love your daughter and are worried about her. There's nothing wrong with having those thoughts.

Quote:
Tonight she asked me if I am her real mommy. She said she only likes to snuggle with her "real mommy". I have not a clue what that is supposed to mean? She says these little cryptic things that I don't know how to respond or what to make of it?

It means she feels alone, because no one seems to understand her. Telling her "I know you hate school" instead of "you'll have a fun day" in the morning will help, because then she'll have at least one person who understands. When she asks if you are her real mommy, reassure her the aspie way: by telling her in words. "Yes, I'm your real mommy, and I love you."

Quote:
My life seems to revolve around making sure things are the way they are SUPPOSED to be for her.

There's nothing wrong with this; it just shows you love your daughter. Every good parent's life revolves around making things as good for their kids as possible.

Quote:
And now that she is more self aware she tells me she doesn't want to be alive. She says this not with a typical grumbly I'm mad because you won't give me ______, but with genuine misery and unhappiness.

She feels this way because she feels alone, with no one understanding her, and she feels as if she is a burden on you. Again, showing you understand by telling her will help. Also, tell her you love her and remind her of times she made you happy, so she knows she's not a burden.

Quote:
I don't know how to make her happy. I don't know how to help her find happiness. She is agitated and frustrated by any attempt I make at being silly and carefree. The only times when she seems at ease is when she veges out and I can tell she is in her world. She doesn't like our world. She doesn't want to live in fear and confusion. I don't know how to help her find a place in this world where she can be ok.

I think you are right: she's happy when she veges out and can be in her own world. So you can make her happy by allowing her to do that. Maybe do it after homework is done; that will give her a reason to try to get homework over with more quickly.

Don't worry about helping her find a place in your world yet. She's only 7. Plenty of time for that later. Just let her be happy in her world. There's nothing wrong with letting her be happy.

Quote:
We had a session with a new OT and she seemed appalled at the tousled/unkempt state of my daughter appearance. She stated "we can work on grooming". Yea, ok, go ahead. That's so not on my radar because I've given up on having the girl with clips in the hair or fashionable clothes or even just combed hair. Does that make me a bad mom?

Of course it doesn't make you a bad mom. It means you're concentrating on the things that matter, rather than superficial things like fashion or hairstyle.

Just remember, show her that you do understand. "I know you hate school, but I'll come get you as soon as school is over."



Alien_Papa
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06 Nov 2010, 11:07 pm

Alien_Papa wrote:
Well I laughed out loud when I read this, because it's so true and so familiar, but I would never have the courage to post it.



I just wanted to make clear that I was laughing at the recollection of my own feelings of futility and exasperation, not any of the information or emotions in the original post.

It seemed like my whole life was organized around my daughter, yet she was so genuinely unhappy and ungrateful. And it was so hard to understand why. An entire day could feel like an exhausting mental chess match. She didn't want to get up, didn't like her clothes, didn't like her breakfast, didn't want to go to school, didn't like school, emerged from school overflowing with anger, screamed, hit, threw things, and so on. Fought over bath and bedtime. And all the time that she was so difficult to be around, she was so clingy. Wouldn't go into timeout. Insisted she needed help with all the most trivial tasks. And then the next day was exactly the same. And the day after was exactly the same. Like Groundhog Day. And so on for several years. Picking an individual moment, like we fought after school today or something like that doesn't capture the real difficulty of dealing with these issues for days after days. When something moves so far beyond capacity for rational understanding, all I can do is laugh at the absurdity of the situation.

Somebody posted a topic about something like how has your child made you a better person. While a lot of my effort to help her seemed fruitless, I became lot more compassionate person and enormously improved my self-control.

Things really did get significantly better for a while. She's almost 13. She's physically grown up. Sometimes she acts with the maturity of an adult. She did a lot better in school and became somewhat comfortable around the other kids, without actually making any genuine friends. I haven't heard in quite a while about not wanting to live anymore (that had been constant for about a year). She's an amazing person and I'm really proud of her.

But in the past couple months there's been some regression and it feels like the boulder has rolled halfway back down the hill.

Quote:
We had a session with a new OT and she seemed appalled at the tousled/unkempt state of my daughter appearance. She stated "we can work on grooming".


That OT may not be a keeper.

If a kid is suicidal, then "grooming" advice should not be a priority.

My daughter has seen a therapist for about a year. It's awkward for me to receive advice from somebody who has studied AS in school, but does not have personal experience with it. But my daughter has been receptive to getting advice from somebody with whom she does not really have an emotional attachment.



Tracker
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07 Nov 2010, 2:09 am

Hello there.

I haven't been around much to help, but it seems as though your having some problems. I don't know what I can do to help, but I will add the advice that I can.

1. As others have said, don't patronize and lie to your daughter by telling her things like, 'you will enjoy yourself', or 'today will be different'. Be honest with her. What she needs is somebody to help understand what she is going through, and be supportive of her. Telling her that 'today will be fun', just reinforces the idea that you don't understand, and you think she is delusional. So, just be honest. You will get much better results by telling her things like, "I know school isn't pleasant for you, but I can't keep you at home." You could then help further by saying, "I know it is hard, but I need you to be strong at school today, and be brave. I will be by to pick you up as soon as I can."

A little understanding, and honest encouragement when facing difficulty is far more effective then denial.

2. Skip the homework. I don't know if you got a chance to read the latest version of my book, but I talk about it in there. You did read the rough draft, but I went through and added another chapter called 'how it all comes together'. I feel it really does help to explain the problems with homework, exhaustion, and the anxieties that come with dealing with the world. It may help you to understand why your daughter is so reluctant to do homework. You don't have to reread the entire book, just that one chapter I added.

But anyways, the point I am trying to make is that your daughter is only 7. Homework isn't exactly the most important thing in the world at that age. If she was in college, then I could see the importance of homework in order to learn. But this is second grade. Just let it go and don't bother with it. At this point, her continued sanity is of a higher priority then her ability to write neatly. Let her build some comfort, and some confidence with schooling, before you make it worse then it has to be. Plus, as you have said already, she is reading and doing math 2 years above her, so it isn't like failing to do homework will make her fall behind her peers. Telling her that she needs to do the homework or fail second grade is just silly. She should already be 2 years ahead, and not doing any homework.

3. Let her veg out. Seriously, I know it may not seem like a good thing to you, but vegging out and getting lost in your own world is the only way to maintain your sanity when you are surrounded by people intent on destroying your sanity. Just leave her be. She may not be very productive, or active, or outgoing, but it is better then having a nervous breakdown.


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Mama_to_Grace
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07 Nov 2010, 8:48 am

Alien_Papa wrote:

It seemed like my whole life was organized around my daughter, yet she was so genuinely unhappy and ungrateful. And it was so hard to understand why. An entire day could feel like an exhausting mental chess match. She didn't want to get up, didn't like her clothes, didn't like her breakfast, didn't want to go to school, didn't like school, emerged from school overflowing with anger, screamed, hit, threw things, and so on. Fought over bath and bedtime. And all the time that she was so difficult to be around, she was so clingy. Wouldn't go into timeout. Insisted she needed help with all the most trivial tasks. And then the next day was exactly the same. And the day after was exactly the same. Like Groundhog Day. And so on for several years. Picking an individual moment, like we fought after school today or something like that doesn't capture the real difficulty of dealing with these issues for days after days. When something moves so far beyond capacity for rational understanding, all I can do is laugh at the absurdity of the situation.

Somebody posted a topic about something like how has your child made you a better person. While a lot of my effort to help her seemed fruitless, I became lot more compassionate person and enormously improved my self-control.

Things really did get significantly better for a while. She's almost 13. She's physically grown up. Sometimes she acts with the maturity of an adult. She did a lot better in school and became somewhat comfortable around the other kids, without actually making any genuine friends. I haven't heard in quite a while about not wanting to live anymore (that had been constant for about a year). She's an amazing person and I'm really proud of her.

But in the past couple months there's been some regression and it feels like the boulder has rolled halfway back down the hill.


AlienPapa, your daughter sounds very much like mine. It gives me hope that my daughter will also get beyond this difficult phase. And BTW, I was the poster of the how my child makes me a better person. She has, in so many ways because I am not the person I once was. Dealing with this day after day brings you face to face with the true strength, love, compassion, and patience that you must find in order to survive. I know my original post was made in frustration but it is so true and I think I tried to convey my situation in a moment of darkness, but it is all very true and does not even begin (I feel) to convey all the difficulty we witness every day (much like groundhog day like you mention). The responses I have received have helped. Thank you. BTW, my daughter is only 7 so perhaps I have a few years of this ahead. :(



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07 Nov 2010, 8:58 am

Tracker wrote:
Hello there.

I haven't been around much to help, but it seems as though your having some problems. I don't know what I can do to help, but I will add the advice that I can.

1. As others have said, don't patronize and lie to your daughter by telling her things like, 'you will enjoy yourself', or 'today will be different'. Be honest with her. What she needs is somebody to help understand what she is going through, and be supportive of her. Telling her that 'today will be fun', just reinforces the idea that you don't understand, and you think she is delusional. So, just be honest. You will get much better results by telling her things like, "I know school isn't pleasant for you, but I can't keep you at home." You could then help further by saying, "I know it is hard, but I need you to be strong at school today, and be brave. I will be by to pick you up as soon as I can."

A little understanding, and honest encouragement when facing difficulty is far more effective then denial.

2. Skip the homework. I don't know if you got a chance to read the latest version of my book, but I talk about it in there. You did read the rough draft, but I went through and added another chapter called 'how it all comes together'. I feel it really does help to explain the problems with homework, exhaustion, and the anxieties that come with dealing with the world. It may help you to understand why your daughter is so reluctant to do homework. You don't have to reread the entire book, just that one chapter I added.

But anyways, the point I am trying to make is that your daughter is only 7. Homework isn't exactly the most important thing in the world at that age. If she was in college, then I could see the importance of homework in order to learn. But this is second grade. Just let it go and don't bother with it. At this point, her continued sanity is of a higher priority then her ability to write neatly. Let her build some comfort, and some confidence with schooling, before you make it worse then it has to be. Plus, as you have said already, she is reading and doing math 2 years above her, so it isn't like failing to do homework will make her fall behind her peers. Telling her that she needs to do the homework or fail second grade is just silly. She should already be 2 years ahead, and not doing any homework.

3. Let her veg out. Seriously, I know it may not seem like a good thing to you, but vegging out and getting lost in your own world is the only way to maintain your sanity when you are surrounded by people intent on destroying your sanity. Just leave her be. She may not be very productive, or active, or outgoing, but it is better then having a nervous breakdown.


Thanks Tracker.

I have changed my "lying" ways and will not do that with her anymore.

I will talk to the teacher about homework. I don't know if she will be able to waive it, it is a part of the grade. I have written her notes that we weren't able to complete it but she has always expected us to complete it in time. The way our afternoons go is that she comes home and veges for an hour and then I try to ease her into homework. Some days are harder than others, so some days it gets done and others it doesn't.

I do let her veg out as much as she wants (much to the disdain of those around us) so I have learned that from these boards and your book so thank you!



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07 Nov 2010, 12:21 pm

About homework.... When my NT son was in 2nd grade, he got into a HW refusal mode. I struggle with that issue because I think it is stupid for 7 year olds to do HW. (I have always felt the school day should be adequate, and most jobs don't require that you bring home work, so what's the point?) Anyway, the teacher told DS that if he could prove mastery of the subject with 100% on whatever the topic was, he was excused from HW. That made sense to him. If he didn't get 100%, he understood that he needed the practice. If he did get 100% then he has demonstrated mastery. In addition to getting buy-in from him, it also got him working harder during school time.

With regard to the after school reading, my AS DS, refuses to do the hw reading. However, he will research his special interests on the internet for a time WELL exceeding the reqiured reading minutes. I have advised the teacher that I am signing off his reading so long as he's doing that research. I know your DD is a little younger (DS is 10), but I bet there are websites that are appropriate for her that would get her reading without having to be forced. We have found a wealth of links through the hoagiesgifted website. If the content is that important to the teacher in 1st grade, then I would be concernd about the "fit" for your daughter. (I have always heard that grades 1-3 are learning to read, grades 4 and up, reading to learn). In 1st grade, the content shouldn't be key.