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

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Mama_to_Grace
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02 Nov 2010, 10:35 pm

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.

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.

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?!?!?!?

Ok, so I am having a frustrated evening and am venting, forgive me.

So maybe I can bribe her with the iPod Touch and get her finally out the door (yes we're late). In my former life (BC before children) I was never late. Yes I know we've heard all that before.

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?!?!?!?!?

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.

If I get a six hour work day I am lucky and it is a good day. Then I pick her up from school. Then I hear "I don't feel good" about 1,000 times for the rest of the day. We get home, she veges out and relaxes and I wait to broach the topic of homework. (Lord help me please).

I know this is coming across sarcastic or comical but I really don't know how I got here. And I didn't even make it to bed time which is the worst part of the day. This is completely REAL-this is my life-no exaggerating! I don't know how to break out of this. I feel she's doing better and then we have regression. It's two steps forward one step back. I don't know who can help me figure out how to change this. Will it ever change?

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?

Sometimes it is as if she is living one second to the next. You can teach a NT child something by explaining it perhaps once but I might explain something to her over and over and I can't teach her to think about a consequence before she reacts. She is so reactionary. Unless it having to do with her rituals, then there is great expectations on EXACTLY how something should be. My life seems to revolve around making sure things are the way they are SUPPOSED to be for her.

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. 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 feel like I am so accustomed to all of this that it doesn't even register how different this is from most people's lives. I've learned to just go with the flow. I will attempt to stop and teach a lesson but these days I tend to pick my battles. 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?

I don't want to be resigned. I want to be here on WP trying to learn how to help her. But sometimes the full weight of everything comes down on me and I feel so lost. I just wish there was something I could do to make her happy.

Thanks for letting me vent :cry:



druidsbird
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02 Nov 2010, 10:56 pm

Wow. Your child is just like I was, to a tee.

I never though about what it must have been like for my mother. It sounds difficult.

That being said, I'm still more sorry for your daughter. I know exactly what she's going through, and while my mother made it through my childhood just fine, I didn't make it through very well at all, despite her best efforts.

You have an advantage over my mother, in that you know your child is autistic. Back when I was growing up, nobody knew what was wrong with me. So most likely things will be easier and turn out better than they did for me (and my mom too i guess).


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leejosepho
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02 Nov 2010, 11:19 pm

Mama_to_Grace wrote:
I say "You're not sick. You'll have a fun day!" She knows this is bull&*@% ...

So, stop lying to her.

Mama_to_Grace wrote:
Then we go to class.

I would also stop that.

Mama_to_Grace wrote:
Sometimes I wonder-how did I get here?

My own life is a different kind of ugly, yet my questions are often the same.


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druidsbird
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02 Nov 2010, 11:24 pm

leejosepho wrote:
Mama_to_Grace wrote:
Then we go to class.

I would also stop that.


He has a point. My life improved greatly when my parents relented and let me be homeschooled.


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kepl030
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03 Nov 2010, 1:35 am

My son is 7 and a lot like your daughter. The I am sick and total lack of interest was every morning for the wife and I. I did not find anything wrong with this behavior because I was exactly like that as a child. I couldn't imagine what my mother felt or went through and I don't think I ever could. My wife goes through the same feelings. I don't think anything is wrong with this because I went through the same things growing up. It's kind of crazy, but I seem to be able to reach Kai easier then my wife is able to. Kai was Diagnosed at the beginning of this year with AS. I was diagnosed shortly after.

The school has been very understanding. Through IEP'S and so on we have come up with help for Kai. They have implemented extra activities to spark his interest. They let him doodle while the teacher talks *He has the ability to absorb stuff that is being said even when his mind is elsewhere* and dedicated computer learning. Those are just a few examples of how the school has changed in order to help him. Kai is in kindergarten. They held him back because of his social ability with other kids. After the second time in kindergarten it became clear it was much more because his social level still has not really improved. He acts about four years old, but has the academic ability of a 3rd grader so far.

The schedule and precise way things need to be are a common everyday ritual. God help you if you get the wrong spoon when he eats his cereal. The meltdowns and just the fight to get the simple stuff done is hell for my wife. Again I see this as normal.

The point to this is to have you look at it from a different way. What does your daughter live for? What are her interests? This is not the same way it will work with another child, but with Kai I had to involve his interest in his ritual like I do for myself. You mentioned an Ipod. What does she like about this Ipod. The music or the games?

As an example of mixing the interests and routine. Kai likes Starcraft 2. at 7:30pm every night we have an alarm clock set with a song he likes. At this time the song comes on and it puts him in a upbeat mood. Mom and dad know that this means that it is time for Kai to pick out his cloths for the next day. We go over to Kai and take him to his dresser. We word this very carefully otherwise it causes fits....NO GREY AREA... we ask, "Kai could you pick out a pair of socks that will make you happy tomorrow". He thinks for a minute and smiles to himself and picks out a pair of socks...So on and so fourth with underwear, pants, shirt. Its getting cold out now so we took him to the store and let him pick out a new winter jacket and gloves/hat. We then set them beside the computer. Then we read him his bed time story and he goes to bed.

He wakes up at 6:30am every day. We have an alarm clock set again with a song that he adores. So this tends to have him wake up to an upbeat/happy mood. Kai loves his morning shower..It is something he lives for and makes his day. If he misses it there is HELL to pay! He is in the shower from 6:35am to 6:50am. *again he LOVES his shower* At 6:50am he dries off and comes out wrapped in his tower. The computer is set to turn on and load Starcraft 2 at 6:55am. The 5 minutes between the shower and computer is when he gets dressed *minus Jacket, hat, gloves, and shoes* At 6:55am you better believe that Kai is on starcraft 2 playing his game. This goes on till 7:30am. At 7:30am I have the computer programed to bring up a pop up box that Kai is able to read. It asks him if he would like to eat his breakfast then go to the park and swing before school. So Kai comes and finds mom or dad asking if he is able to go to the park a little bit before school. We tell him that this is a great idea and ask him to check the weather before we leave. *This lets him decide to get his hat and gloves* So we go on and play at the park from 7:50am to 8:08am. Then the school bell goes off and we take him into class. Kai has the same seat everyday. *We went through HELL again before we figured out this was causing confusion for him* His teacher takes over from there. She tells Kai to get out his doodle pad and a pencil of his choice. At that point Mom and Dad are out of the picture fit free and he is happy.

Do you know how long we went through meltdowns, fits, anger, crying. clinging to our leg? You have a good idea after reading your post. Most kids are different. This is what keeps Kai from getting bored. It took us months of coming up with this daily ritual. Kai seems happier and very much less depressed.

Some people will see this as bad. Bad as far as the school is changing to fit Kai. The real world does not work like that. That is crystal clear and I see that people think that way after reading other threads on here. I think that this is the way to handle the way Kai is now. We will adapt and modify through watching his changes as he gets older.

The point I am trying to get at is that Kai likes to think things are his idea. Kai does not like to be lied to. Sometimes we have to down the level of detail to meet the 7 year range, but he needs the truth. No gray area! Have you tried changing your wording on stuff and so on?

Now do we still have fits? Yes! Do we still have major meltdowns? yes. This has not fixed anything. This has just made it easier to manage for the parents to get the day started.
I may be just blowing smoke as the term goes, but have you tried to play to her interests and the way she thinks? As you can see from above Rituals, Rules, and everything else it comes with are everyday for us. My wife had to change the entire way she does stuff and let me tell you......NT people throw major fits too when there life is forced out of how they like it!! ! I love the fact of knowing when things will come and at certain times. I hope something helped in this post. It is after all only my third one!



catbalou
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03 Nov 2010, 1:48 am

Yes but I believe Mama to Grace is parenting on her own (I think, correct me if I'm wrong) so homeschooling would mean she NEVER gets a break, and as a fellow single parent I can tell you those hours on your own are often the difference between sanity and going completely bonkers.
Having just had mid term break and my own daughter' s company for every hour of those ten days, I was so relieved when school started again, but then I am lucky as currently she's ok with school.

I wish I could give you some helpful advice . All I can say is that those bleak days when everything seems overwhelming, and not a Chinese of light anywhere; they will pass , and you'll feel more able for managing.

A few things came to mind, well the homework struggle which for us used to hell as well, there would always be loud wailing, staring at the paper for hours , and eventually lying on the floor stabbing the book with the pencil and scrumpling up the page.

My daughter now gets very little homework , which is a fantastic improvement. I dont believe in homework myself, for AS or NT kids, I think they're in school long enough in the day , let them have their freedom after school, and I dont believe anything constructive is learned.
But surely (especially at her tender age) you can get the teacher to massively reduce the amount? This is something I would be VERY strong on with them, I mean a 7 year old? Maybe drawing a picture, or one sum, or a line of writing, thats enough!

Also I agree with that bit of not telling her she will have fun when she won't, because that may make her think nobody in the world understands her true reality. I know with my daughter, she gets enraged if I gloss over stuff, or make light of whats grim for her , whereas she's much calmer if I just acknowledge it.

Those times when she zones out, and then is calm , can she have more of them somehow?
Also another thing I would say, and I know it's very easy to slip into when you're low, but try not to compare your struggles and life with anybody elses'. You don't know the road they're walking, they might seem like they have easy lives with uncomplicated nt children, but perhaps they suffered childhood abuse, or their moms dying of cancer, or their husbands having an affair, or any number of things, you just dont know, and to them their reality is hard in that way.

Just realise you're doing the best you can, and she probably is too (I could be addressing myself here).
Also, it's good to watch really funny dvd's that make YOU laugh sometimes, because they're really good for lifting the mood and thinking about something else other than your wonderful (but difficult) daughter!! :)



catbalou
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03 Nov 2010, 1:50 am

(was replying to druidbirds post re the homeschooling)



catbalou
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03 Nov 2010, 1:55 am

i realise kep 1030 and I were posting at the same time! What a lucky boy he is to have such an understanding dad!



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03 Nov 2010, 3:01 am

Try keeping her home for a bit. See if it gets any better. Can you miss a few days of school and see if she's any more energetic on those days?

I agree with what everyone else has said-- you're a liar. You don't see yourself that way; you don't mean it that way. Being NT, you probably don't even realize you're lying. But you are. And worse, you're saying, "I don't listen when you tell me something's wrong; I don't take your pain seriously; I deny it. You're not really hurting. You should be happy. I don't care. Don't tell me when it hurts."

Then you're taking her to school, which is for one of the very many possible reasons torture for her as for so many. Leave her to exhaust her reserves there drawing on hidden strength of the sort that allows mothers to lift cars off of their children. Day in. Day out. From waking up being betrayed, spending her day suffering, then she comes home exhausted. Can't enjoy life. Imagine trying to enjoy life if you spent seven hours every day working so hard you pushed yourself to your limit and past it, with everyone calling this fun, but you getting no benefit from it, just forced into busywork that never let up, just made you so tired.

So then she gets her little break. And then it follows her home. After she's stopped. It comes back. Makes her start again.

Then she goes to bed. Then she wakes up. Another day of the same. Only suffering. Unremitting. No energy left to enjoy anything. Why would she want to go on? And you're her mother. You're the one she should be able to trust. You're the one who does this to her. She's pleading with you, holding onto your leg. You just want her off. Her pain is irrelevant; you just want her off. You just want it to be convenient for you. (Maybe you care a lot, maybe it tears you up inside, but that's not going to come through. That will NOT come through. All she knows is you hurt her no matter how much she tries to ask you not to.)

...Of course, that's all just a guess. Maybe you should keep her home for a while. Maybe more than a few days. Can you spare a week or two? A month would be better, but that's too hard for you. The school district will start bugging you. You don't want to deal with that.

Anyway, you might change schools, or you might try half-days. Or you might homeschool. But definitely before you start anything else, give her a break, some time to veg out. Imagine going through something that hard and then trying to give something else your all. Not gonna happen. To make anything a positive experience, you'll need to give her a vacation of sufficient length to allow her to stop tapping into her emergency reserves of strength and refill her regular strength enough to use only that. Maybe after she can start not reaching critical on a daily basis, she'll have energy left over to have fun. After a while of that, maybe the suicidal ideation will stop.


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momsparky
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03 Nov 2010, 6:21 am

Oh, sweetie - I'm so sorry. If it helps, it sounds exactly like 2nd Grade for us...and 3rd did go slightly better, at least in the mornings. We did get a fair amount of support from his teacher that year, who - God bless her - read up on Aspergers before he started school. Believe me, you are not alone - we were going nearly out of our minds getting him to school, and then he'd go ballistic when he got home.

One thing - can you ask the school if you can take her to the classroom either before or after all the other kids? I know DS was relatively OK if he didn't have to deal with the hubub and social mess of lining up (just discovering this in 4th grade.) I doubt this will make her want to go to school, but I've found DS really appreciates even small accommodation - as long as it doesn't impact him socially - I think because the acknowledgement that things are hard for him helps, even if the accommodation doesn't.



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03 Nov 2010, 6:33 am

I don't know what I would have done if we couldn't have homeschooled.

My son hung onto my legs, and biffed and kicked the teachers when I left him at school when they held onto him so that he couldn't follow me, and screamed and yelled and begged to come with me. He was 5 then. After about four weeks I decided that he really meant it, that he really really hated it at school.

It took me that long to realise, to take him seriously about it, to understand that if a five year old is hitting teachers and struggling to get away and yelling in public and then apparently went mute after I left and didn't say a word at school all day, that there was a problem, a real problem.

And I agree with most of what DandelionFireworks and catbalou and a few others said about the awfulness of the experience for her, the hours of endurance involved, the cruelty of homework after school is over, the exhaustion and loss of interest in life, and the "lieing" on your part, ( which I did too, trying to make it *be* alright by saying it would be, by thinking of the positive aspects, etc when he was so clearly not happy ).

But you say that you work, and if you're a single-parent then there's probably not much you can do ... except tell her that you wish she could stay home, that you understand that it's hell, that you wish you didn't have to go to work either, but that you have to, and as a result she has to aswell, that you're in this together, enduring.

Chuck the homework; seven is way too young for it to be necessary or useful. Let her have her time at home as free as possible to enjoy herself, to recover. Don't make her do it because you hve to shop and cook and clean and wash clothes out side working hours too.

Good luck. What a nightmare. Explain to her that school is the state-provided babysitting service, that you can't afford any other kind, that you are beginning to realise how awful it is for her, but that you simply don't know what else to do.

At least that way she will have "you".

PS. I totally identify with the "struggle" over the smallest things, however routine, and the overwhelming tiredness about it, like a never-ending darkness in a tunnel ... but seven and half is actually about the age that it started to get a lot better. He learned to read, started speaking more clearly and "completely", could go to the toilet on time and entirely on his own, put clothes on alone, and discovered online lego games and other fun stuff. :) ... But of course he was homeschooling.
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03 Nov 2010, 9:20 am

We're in Oklahoma. My husband and I are moving because I don't want that to be our lives. People here have already been very cruel. I would imagine a lot of what she's dealing with has to do with knowing that she's different and feeling like that's not OK. I can relate to that as well. I had tremendous anxiety and cried every day before school for a year or two. I am so sorry for both of you.

I also wanted to suggest that she really may not feel well when she comes home. That was a common complaint of mine, and I really didn't but wasn't able to express what was bothering me. Because I was so anxious I had a lot of gastrointestinal issues. I also held all my tension in my shoulders, so it was very common for my neck and back to hurt.

I agree that lying to her isn't an option. You mentioned that you work so I would imagine the homeschooling isn't really an option for her either. It might just be a good idea to start introducing her to the harsh reality of life: sometimes we have to endure things that are difficult and not what we want. If all we did was what we wanted to, life would be pretty boring because you would never appreciate having that "fun" time. That might be too complicated for her, but the fact is that life is sometimes about doing what you have to and figuring out ways to get through it. She needs an education - that's not optional. Emphasize that you believe in her and you know it's hard for her, but that you know she can do this because she's a very bright and very strong little girl. And keep telling her that until you both believe it. Giving your child positive feedback will bring more positive behavior.

Is there any way that you can interject pleasantries into each part of the routine? Like sitting down for homework and having some cookies and milk and talking about something she likes while you do it? It may drag the process out initially, but if you can create a positive association with it, it might not be so overwhelming for her. Sometimes changing the tone and making it less formal or pressing can help.



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03 Nov 2010, 9:43 am

I am a single mother. On August 31, 2010 I pulled her out of public school due to their lack of understanding, their unwillingness to do ANYTHING at all, and their inability to keep my daughter in class. She was in a classroom with 22 kids barely able to keep her composure, much less learn anything. During the one year and 1 week she was at public school she regressed academically. Before Public School she didn't refuse school AS MUCH, she would actually come home after school and say she had fun. I am trying to get back to that place. She has been in a private class of 6 students with a caring and nurturing teacher who is going to a confernce on AS in a few weeks. I think she wants to help but doesn't know how. She reports that my daughter seemes "fine" at school. Her MO is that she basically fades into the background, doesn't engage. And the teachers see her as ok because she will do her work (with help) and isn't a behavior concern. They don't see the effort and difficulty she is enduring every minute.

I would love to homeschool. I know that would make my daughter SO happy. But #1 I have to pay my bills. As it is right now with paying for private school I am teetering on financial ruin. And I am sure that adds to my feelings of desperation and frustration. #2 I don't think she would do any work for me.

I take some exception to the posts that say I am the liar and selfish for not listening to her complaints. I LISTEN TO THEM. I HEAR THEM. EVERY DAY!! !! ! That's why I posted. I am dying inside along with her because no mother can bear to watch her child suffer every day. I AM DOING EVERYTHING I CAN. Everything I know to do. I have sacrificed everything I have and am not complaining-I would do it again and more in an instant. In my mind I wonder what good would it do to comisserate with her? Wouldn't it make it worse to say "you're right school sucks. Sorry I have to send you there".
I guess it's NT of me to think the power of positive thinking and positive encouragement would help.

We do have a schedule. It is written and posted on the wall. But when 5pm comes around and it's time to do homework she screams and protests, and crumbles the paper, and I uncrumble it, and I say ok no problem, I'll write the teacher a note then her self esteem gets very angry and doesn't want a note to go to the teacher so she makes herself do it and I help her with most of it. It's only 1 page per day and we don't do the reading we are supposed to. Sometimes we do one problem at a time and then take a break. Because of this homework can take over an hour. Our schedule is nothing down to the minute like yours kep1030. Thanks for your post. Perhaps I will try more detailed scheduling.



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03 Nov 2010, 9:45 am

druidsbird wrote:
Wow. Your child is just like I was, to a tee.


What could your mother have done better to make you happier?

If homeschool was not an option?



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03 Nov 2010, 9:48 am

kepl030 wrote:
The point to this is to have you look at it from a different way. What does your daughter live for? What are her interests? This is not the same way it will work with another child, but with Kai I had to involve his interest in his ritual like I do for myself. You mentioned an Ipod. What does she like about this Ipod. The music or the games?


It is the games on the iPod Touch. She likes geography games. She also likes TV. If she could sit at home and do nothing but play video games and watch tv she would be ok. She also likes singing. I am saving up to get her a keyboard or guitar (I haven't decided which one yet) for Christmas.



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03 Nov 2010, 9:52 am

catbalou wrote:
Also I agree with that bit of not telling her she will have fun when she won't, because that may make her think nobody in the world understands her true reality. I know with my daughter, she gets enraged if I gloss over stuff, or make light of whats grim for her , whereas she's much calmer if I just acknowledge it.

Those times when she zones out, and then is calm , can she have more of them somehow?
Also another thing I would say, and I know it's very easy to slip into when you're low, but try not to compare your struggles and life with anybody elses'. You don't know the road they're walking, they might seem like they have easy lives with uncomplicated nt children, but perhaps they suffered childhood abuse, or their moms dying of cancer, or their husbands having an affair, or any number of things, you just dont know, and to them their reality is hard in that way.

Just realise you're doing the best you can, and she probably is too (I could be addressing myself here).
Also, it's good to watch really funny dvd's that make YOU laugh sometimes, because they're really good for lifting the mood and thinking about something else other than your wonderful (but difficult) daughter!! :)


Thank you. This is helpful to me.