I am so depressed and discouraged

[matika]

Friday the school took 2nd and 3rd graders on a field trip to a local festival in the neighboring town,, I was asked if I would like to come to help Rachel's aid incase something came up with her, so I agree, I can't complain on a chance to go out on a field trip and take lots of pictures,, kill two bird with one shot, have fun and work at the same time right??
Well I did took pictures, but then Rachel became upset and I had to step in,, I had never seen her rage out like that at anyone, hit her aid with her fists, cried, wanted to go through an exhibition that was not part of the field trip, you had to pay to enter there, and they had allowed her to go to one other one because they saw how upset she was, so when she could not go on the other side, she was very upset. I came in and after no sense was able to be talked into her, I had to bunch her t-shirt on her back to create a harness and be able to force her back into her feet and force her to walk on her own, she is very heavy anymore and I can't just pick her up and carry her like I could a couple years ago. We walked across the street after stoping a few times to see if she was ready to relax,, finally ended up across the street in a field they had set up as part of the event, there was a large area with bails set in a circle with mulch on the center, for the pow wows at night, and she started to relax and we where able to let go of her, I told her to stay inside the circle and she forgot all about her ordeal.
Looking around to the other kids her age, my girl is so far away from ever been that. I know by now I should be used to it, and not expect her to be like them, but it hurts, at the end of the day all my energy was drained and my body hurted and ached from the struggle. And I sit at nights and work on my computer and cry in silence so no one can hear me, there is no where I can turn to find a shoulder to cry just once, and I want to scream and take a fit like my daughter did on Friday and I have to just keep it inside.

On the other side is my son, he is eight, and his autism comes out every year more and more,, he is resstless, unable to sit still in class, unable to concentrate, unable to do his work. I met with the autism consultant and the teacher a week ago, and all I can hear is he can't do and he can't do, and autistic kids do this and that, and yet I know of what my son is capable because I homeschooled him before and he was beyong some of the stuff they say he can't do,, I work with him at home at nights and all it is, taking the write wording, simplifying it and making it understandable for him,, that, and he is playing them good in ways, making them believe he can't, so they don't work with him,, the school will have an IEP on him in 3 more weeks, meanwhile I am evaluating him to see where his math skills are, and I sit with him last night and make a story problem up, and he knows the answers, and he says them, but he can't do the problem on paper, is that making him less smart then the ones that can write it down on paper?? he will answer the correct responses, even guesses what I am trying to ask and elavorates and answers ahead, but he can't write it down, so I am practicing and practicing, and hopefully it will catch.
The IEP meeting can I do it?? I feel I am going to either 1) leash out at them in outrage, not because they are not doing their job, they really try, but why on earth I have to sit through all this, and all the other parents have perfect children? 2) I probably will just break down and cry and walk out,, I pray fro strangth but I feel I am just going weak, maybe is PMS and by the time the meeting comes I be ok.. can I just scream, cry and then when my kids and husband get home, I can make sure my hair is up in a nice little bun, and I have my clean apron on, and my polished shoes, and my house all cleaned up and diner on the table, and play the beaver to beaver song, and put a smile and pretend I am sane??
I ask Joshua last night (my son), if he had any friends at school,, school been back now 2 weeks, you would think he could remember the name of one kid in his class,, he said I am trying to make a friend.. but he is not getting anywhere in that department,, maybe taking him back out and just homeschooling him would be the trick?? I tried to put him in the boys and girls club, so he can go spend some time there after shcool, but it was chaos the first day and I about went off on the director because she could not think good enough to just tell him to get up off the floor, which she told me he spent the first hour there on the way, and send him to a corner,, and she called my cell phone and could not get hold of me she said.. what the **beep** that is what home numbers are phone,, is people so darn modern now a days they don't think that a cell phone for some of us is for emergency only when we are NOT home??, so my son spend 2 very upset and distressed hours and no one did a thing for him,, I should ask for my money back, but I do hope to put him on the soccer theem this year like he did last year, and If I bring anything up they might not let him in the teem.

Ok, I think I rumbled enough for one day,, I am just out of emergy, and today even if it's sunny, my day is stormy and gray :(

[Kristen (ColeysMom)]

Matika...I wish I had some words of wisdom...I'm actually petrified reading stories like this and others...I know where it starts, that's what I'm living now...and I can see precisely how could evolve...so I know you are even more worn thin than me...because I've got 4.5 years under my belt and I feel like an old dish rag! You are NOT alone!

I wish I had more than that for you, I'm sure some more inspiring words will come form others! But I did want you to know that I'm thinking of you and sending some positive vibes your way!!!

KJ

[LauraP]

Matika--oh, I've been where you are, and it is so hard. I'm sorry you're going through this, and wish I could give you a hug, and fast forward you to a place where you could just get a glimpse of the better things that are in store, as both your kids mature and are able to handle things better. But, unfortunately, I don't have that power, or I'd probably be time-travelling all the time myself to avoid the pain of the "now", when it's really bad.

If at all possible, can you get other folks to attend the IEP with you? Someone to keep you focused and calm, if nothing else. If you can get an advocate through either the school system, or a private or non-profit organization, it is really worth it, or if you have a very collected and focused friend who can state the issues for you, so you can represent the emotional side, it will help a lot. Then, you've got both the rational and the emotional sides covered. The person handling the rational stuff can take notes, keep it focused, and kick your ankle under the table if you start losing it.

The other thing having more people on your side does, is it rights the balance a bit--the school where Sierra used to go would pre-assemble in the worst, most uncomfortable conference room/broom closet that they could find, and we'd enter the room and be seated in the chairs with the worst positioning (a little psychological trick they learned in the FBI, or something, to intimidate people), and where we couldn't see the rest of the people without craning our necks and imitating people at a tennis game, as the comments flew across the table.

I think they need to see that you are serious about getting the specific help for your kids, not just the cookie-cutter program that they might have been applying, and that might not work. At the same time, showing that you are distressed and stressed and that the need is URGENT, I think pushes the message home--you are desperate, BUT, you've got a plan, you are eager to work on it with the school, AND you WILL hold them to what is written.

Also, you sound like you are desperately in need of a break from all this responsibility and need to appear perfectly in control (hair in the bun, clean apron, FlyLady duster, etc.). This isn't the time for appearances--I think you could use some real help, and I mean somebody you can scream to about things. Before we had a good benefits program and insurance, I screamed to God in my car and cursed and railed and ranted; now, my work has an Employee Assistance PRogram so I have a therapist/counselor to scream and wail to when I need to get it out. I highly recommend screaming---it can help identify the things that need to be addressed first.

I know these generalizations aren't really as helpful as I'd like them to be. Private message me if you need more detail, a hug, etc.

[milivica]

(((Beky))) mi hermanita :)

Ok, IF your daughter had 'more' or more developed ongoing appraisal and flexible thinking, that wouldn't have happened. She'd have thought "well, I can't go in there, but I can go there and there and there". Also, with emotion sharing and the 'why bothers', she'd be more concerned about enjoying the sights WITH the other kids, and not the actual activity itself. Watch that RDI tape, get a consultant. It is NOT too late to hope, it is always too late once you give up. Take a break, fine - totally. You can't try 24/7. She is not so far from those other kids, think of those 3 things...ongoing appraisal, flexible thinking, emotion sharing - she had only 3 things different between her and the girls, it's not a mountain...just a hill. ¿Si?

I HEAR you, as a parent that had those thoughts and feelings over and over. Those feelings will NOT be as they are now, forever.

I will urge you, please, especially if you have funding for your children, get an consultant. RDI saved my sanity, my son's life, our lives, our family. I'm going to try really hard not to bother you about this all the time. The only way RDI will not do the same for you, is if your childrens' autism is completely biomedical (food allergies, intolerances, fragile X).

Here's just a very few examples, of my son after a year and a half of RDI - bear in mind it took me close to a year of confusion in applying RDI, to actually start with Vince like I should have:

We went to the movies maybe a month ago, I screwed up the time. I was not a happy camper, I had my mind set on THAT movie at THAT time and already promised the kids....when we got there, and I saw the time and realized we were a half an hour late, I freaked but HE DID NOT. It was so cool, he said, "Well, we can either see a different movie, or just come back another time".

Yesterday we all went rollerskating. It was his first time on wheels. Well, Vincent fell over and over for the first maybe 20 minutes, did the thing where you run in place and twirl your arms trying desperately not to fall, and did it in such a comical way - omg I had to laugh. Well, what he did was incredible. First of all, he was able to 'mark' all the positives in his mind instead of the negatives, "I was going so fast, did you see me, I almost fell over there but I didn't!". Usually, it would be "I hate these skates I hate this place I hate Wisconsin I want to blow up Wisconsin". So, that he did NOT do that, and that he 'marked' positives tells me he is gaining episodic memory (emotional memories), that he is gaining resilience (try try again!) that he is gaining the MEANING of our family trip to skate (emotion sharing with one another as we try not to kill ourselves, me especially cause I'm a clutz) he got it that it didn't matter who did better than him, what color the skates were, what song they were or weren't playing, I mean I swear the kid had a smile plastered to his face and big wide eyes the whole time, two hours. He tried to go on one foot, tried to jump, kept bumping the challenge for himself - even wound up playing tag with some girl, whooooo, was more surefooted than him, so, she'd wait till he fell and whip past him and tag the top of his head "You're it" she'd squeal. And, did Vince say "no fair I fell", no he did not - he'd get all excited cause now it's his turn to chase her. OMG, I cannot describe the high I am still on, from that skating day we had - I'm sure there's more development represented in all he did, I just can't possibly think of it all. OH and he was great at self monitoring where he was, where others were, simultaneously. When he'd about crash into someone he'd opt to fall (falling was his brakes). He was able to borrow the perspective of others...when they bumped or knocked him down on accident, he could just 'know' their mind - it was not intentional, it was accidental, they are learning just like him.

This is the same boy, they tried to take ice skating last year, and he swore he'd never do it again, he fell, he hated it, he was going to blow up the ice skating rink....I thought maybe if I took him more often, he'd get practice, get better, and then he'd be able to enjoy it. Practice skating and becoming good at it was not what he needed to enjoy skating. Cause afterall, no matter how good you get, you will fall - if your mind only marks the negative, no amount of skill/talent - whether learned, practiced, or God given, will be 'enough'.

Know what I mean?

Like did I EVER think he could do all this? I really didn't know, I just knew he could be happier and have more choices, than he did all these years.

The sadness, desperation, hopelessness, fear, everything negative I felt GREW as the gap between he and his peers GREW.

Our kids don't need practice being nt with nt's. Do you want to be around folks enjoying things together, when you can't be a part of it, and can see you stick out, no.

Our kids need practice being themselves, as all kids do. Developing what they have, not developing into others. They'll never be another person, perhaps they can learn to imitate much, like enjoying a tour of a carnival while walking with the group can be memorized, sure. But you don't want that - you want her emotionally engaged, really 'there' with her heart and brain, not just going through the motions, feeling empty.

Ok, done with the sermon or what ever that was. I am just insanely passionate, about the one and only thing that EXPLAINED to me what I wanted for Vince (I didn't have the words for things so intangible) and showed me how to give him what he needs, to have the CHOICE to participate or not - not restricted by what his autism would or would not allow. If he wants to be alone or independent or perseverate on weather, that's fine! But cause he chooses to, not cause he is smart and social and lonely, and has no way around it other than isolation and perseverating on weather even though he'd rather be riding bikes and wrestling and physically challenging himself with other boys.

Ok, really done now.
Love!,
Mili

[milivica]

Hey Matika. Just checking in to see how you're doing. See if my usual extra long post didn't put you to sleep....since I don't see you've posted with a screen full of zzzzzzzzzzzzzzzzzzzzzzzz with your nose on the keyboard sound asleep, I'll come back, see how it's going.

I have a question too, what support are you getting from family/friends - or at least if not support, I hope you are not getting additional pressure. I remember you were with a church, are they helpful, or bible thumpin hypocrites. You are AWESOME, don't forget that. I was looking at your picture tonight...remember sending that? I have my mgh picture book.

(I'd love more if anyone wants to send themselves and their kids)

Cry all you need to, it gets out harmful toxins, it's ok.

Also, did you ever do the cilantro thing we used to talk about - I still do.

[matika]

Well my head feels like It's gonna blow up, my eyes are dried and swollen from all the crying I did before the kids got home from school, and that 8 oz Hershey wtih almost huge candy i got, it's all gone :eek:
My husband is home kids are playing, and I think I made it through the day, we shall see about tonight.

I bought a new Iland in virtual Second Life and won't get it until Nov 4th, so will be moving my texture business into it, so I am spending some time killing a few brain cells plotting it out, and getting ahead of the game and building the new shop,, I am thinking Tuskany, the sim will be besides the shop and a few rental spaces I will put in to offset the cost of tier for the Iland, a huge garden, thinking botanical gardens, with pretty bridges, swamps and flowers, a place where I can go walk and forget about all this, well at least my avatar can go walk and forget about all this for an hour or two a day.

Many people might raise their eyebrow at me when they hear what I do for a living, but remember how we used to dream about having a picnic, and me getting my own Iland, well it happened, maybe not in RL, but I have my own Iland well, now Iland and a half, and I be happy with that, can't beat having fun and getting paid for it.

Support from where and what?? What the heck is support?? I get zero, zap, nothing,, first my side of the family is too far away for support, and his side of the family I would not trust my cat with, forget about the kids... and the church, hon we don't even go to church no more,, something about Joshua and hearing the singing and he saying his ears hurt and he can't stand it, so why bother to go just so I get upset and he gets upset, and Rachel gets upset, and my husband gets upset because we are all upset, and we leave all upset, well you get the picture,, no, no support from them,, and until just a couple of weeks ago,, after MONTHS of not been in church, not even a call, not even from the minister,, I give up, I gave my time, energy, time, more energy, everything I could when I could to that church, and it took them over six months for one person to notice we where not there and called, I don't even bother on answering the phone, they along with all the telemarketers can speak to the answering machine,, sounds like I have an attitude and I am sour, ok well maybe,, I don't need a church to know God loves me and loves my kids, I better leave that one there for now....

Bottom line, I think I survived today, we shall see about tomorrow,, maybe is just pms, I hope is all and it be over an done with in a day or two,, at least by the time the IEP is due.

oh yes,, I been hurrying putting my living room back together after the remodel,, digging things out of the past, picturtes, books, movies, and the RDI is not on it's way to peglem.

Other then that,, I am too far away from any type of emotional, therapeutical, etc etc help we can get for the kids, it aint worth the drive.

agh,, night,, tomorrow I shall see

[tgrimes]

... and she started to relax and we where able to let go of her, I told her to stay inside the circle and she forgot all about her ordeal.
Looking around to the other kids her age, my girl is so far away from ever been that. :(

Matika - the first part... just keep focused on that, from the way you describe it you should be really proud of how you handled it and how she recovered from it. Just keep reminding yourself of that over and over, you prevented the situation from escalating, you did good, she did good. Also, when you say when 'we' were able to let go of her, do you mean yourself and the aide? If so, sounds like the THREE of you handled it well.
Second part... don't fall into it, comparing her to the other kids. She will catch up and you need to stay focused, again on how you 'saved the day' for lack of a better way of putting it, and how you can do that again if necessary, she forgot about the ordeal and so can you hopefully.

[milivica]

Well hermanita you just stick around here ok? I miss your darling accent in your posts Penelope (remember?).

You don't have to do anything right now, including making decisions - silentmiaow gave me SUCH a great piece of advise when I was in a panic. It can be applied to not just panic, but any strong emotions:

...one good thing to remember, that a shrink taught me (one of the few useful things), is that emotions apparently have a chemical half-life in the body, so if you manage to wait long enough the panic part should be over. You shouldn't make any major decisions while panicking anyway (I've learned this from experience) unless absolutely time-pressured or something.

So, you don't have to decide anything tonight, or anytime soon, about what your daughter will or won't be, will or won't do, same for your son.

You've been here, when I was not only ready to give up, I had given up and felt disgusted with myself, and hated myself. I even felt 'cold' toward everyone in the world sometimes, even Vincent and Carmen my own children. (Dh makes me feel cold toward him when ever he's a butthead, so that's nothing unusual).

You're not even being 'sour' about the church thing, and what you wrote answered my question, they were a bunch of bible thumping hypocrites. That had to be incredibly hurtful, for them to do what they did. No call, no "Are you ok, are the kids ok, everyone ok? Can I HELP you or do you need to talk?" Been there done that more times than I can recall, put my all into a 'group', they could take my help, my money, my devotion, but when I was in need forget it.

And I totally remember the island, that was so fun. It was Lara's Island, when she had that island avatar with the really blue water, yes? Remember that thread, where we had to say who we wanted to be stranded with on a desert island, and when Peta said Mel Gibson, I teased:

Peta and Mel press their lips against one another, Peta steps back, takes off her shirt, she removes her bra and 'thud thud', the island reverberates with the gentle thud of her breasts hitting the sand. "Croike!" yells Mel....as Peta screams "Rattle my dags, rattle my dags!"

Or something like that, we were all learning New Zealand sayings.

Stick around, don't take off again. Just 'live' for a while, without making any decisions or projections about the present or future. I have some ideas for you that I believe will help - yes for YOU for a change dear lady.

Love,
Mili

[gynwhyver]

Matika:

No advice right now, just gentle "hugs." Hang in there. We're here for you. I think we've all been where you are at some point, and at least you can vent with us, right? So write it all out, don't keep it bottled up, otherwise you really will go crazy. Ok?

Take care,

Gwyn