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

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"Doubled over" with stomach pain/bloating could be the result of a food allergy/intolerance, and a lot of doctors are still not very good at noticing/diagnosing this.

A classic cause of GI problems ( and zinc and tryptophan deficiency which can cause depression, anxiety, poor sleep, etc ), apparently, ( I'm only just beginning to read about this after years of concentrating on gluten, casein, etc ), is fructose malabsorption and fructan intolerance, and it is very common. Have you had a hydrogen-breath test done?

Good luck. I think most aspies/auties prefer people to be straight with them, and absolutely loathe what looks to them like totally unfounded "positive thinking". But you might find that reducing her fructose and fructan load helps raise her mood and reduce the GI problems.

PS. Foods particularly high in fructans and the similarly "irritating" inulins etc are wheat and rye, onions and leeks, brown-rice ( as opposed to white ), a lot of texturisers and stabilisers, the inotols, sorbitols, xylitols, etc, many beans/pulses, the cabbage family, and chicory, among other things. And foods particularly high in fructose are apples, pears, honey, and the sweeter fruits, ( apart from bananas which are usually ok ).
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Ohhhhhh Mama - I am so with you! Sometimes, I am just at my whit's end. Here's the deal that you and I and some of the others really need to embrace. We are NT and we just don't "get so much of it".

One day I vented like you did here but to my DS. He was complaining that I wasn't tickling his back long enough at night, and I just lost it. One day when he was giving me grief about something that he didn't want to do - I just said, "I quit" and walked away.

I think that there is a point about the NT "lying" that we do in the name of positive thinking. When I finally just said, "I'm tired and I'm sick of pestering you all the time" and "I know you don't like school, I didn't either. I am doing the best I can to make it as good for you as possible." I got some relief. I'm not sure if DS heard me, or I just felt better, but I think that it's important with our kids to trust them with your reality.

Homeschool isn't an option for us as well and frankly I'm sick of hearing everyone suggesting it as if it's a new idea. For those that were homeschooled - I hope they thank their parents for making it possible.

Mama - when DS was 1/2 way through 1st grade, we pulled him out of public school and put him in private for exactly the reasons you state. Unfortunately, once the social rules and executive function requirements of higher grades (for us 3rd), DS really needs to be in a tailored program. By 4th grade my pep talks completely backfired and the meltdowns increased. All of us have different stories, so I'm not suggesting that you will have the same story - but you may want to prepare just in case. From what i have read, it's pretty common fir "it" to hit the fan in 3rd / 4th grades.

Kepl030 - I wish I had your tech saavy! I don't know how to make the right songs go on at the right times, but I love the idea. BTW - count your blessings that DS likes showers!! !

That would have been my life if my son and my daughter had been born as a single person with all their burdens combined. So .. I feel for you, I definitely do!

While I get the benefit of having my two see-saw a bit, so that I'm not usually having all their worst issues hit at once, I can tell you that those slow two steps forward, one step back DO eventually lead to progress. I think you've got an unusually tough road, but you are doing a wonderful job. Your daughter is still at a tough age with the AS, and other tough ages lie ahead, but sitting here in one of my son's "wow, it's come together for him" periods, I know these DO happen. You keep your head down and work your tail off, and then if all has gone well you get a short period where you can literally see how all that hard work paid off. At least when it comes to the burdens from the AS. I think what may make it more difficult for you is that you have to deal with the moody girl issues on top of the AS, and those may run high at almost exactly the same ages you should be getting breathers on the AS issues, which is really unfortunate (5th grade seems to be a good year for many AS boys, but it is often an emotional roller coaster year for girls, AS or not).

Feel free to vent; sometimes that is the best one can do.

Something I have considered, but have not checked into is hiring a tutor to homeschool your chid. So far my son doesn't mind going to school, but if I ever do think of homeschooling, then I have thought of this as I don't think he would do much for me either. If you are already paying for a private school, then maybe the cost wouldn't be too much different? Just a thought.

Sorry you are having a rough time right now. I know it is very difficult, especially doing this on your own. I can't imagine! Does her father help out with anything?

All I can say is that yeah, I get it. My son doesn't seem to have alot of the difficulties that you describe, but I do feel like our world is so much different than what I had envisioned. But each day is a new day, and we just keep pressing on. I think it would really be great if you could just get some type of short break for yourself. Is there someone that she trusts enough that you could just go out for a few hours sometime. Just to have some peace and to do something for yourself?

As far as the comments and things that she makes, I would just try to not read so much into them. I know it is strange, my son makes all kinds of strange statements. Yesterday he asked me if it was Thanksgiving about 15 times. He will say things like "I don't want mom, I just want dad", and I could go on and on. I just feel like he is just trying to sort things out in his head and his world, and instead of keeping the thoughts to himself, he is verbalizing them.

I wish I could help more, but I feel lost at times too. The only thing that helps me is to just say "Okay, Lord, you have created him with a plan and a purpose for his life. Please help me to be a part of what that plan is and give me your guidance and direction in leading him on that path"

Hang in there, we are all in this together, and I am happy we have each other to vent to!

mama, im so sorry to hear the desperation and frustration in your post. sometimes that realization that we are in a place we never expected to be, and more importantly dont know how to get out of, is overwhelming.

i was reading an article the other day about something called "school refusal" which sounds very much like what your daughter is going through. it can be caused by learning disabilties and anxiety, so certainly AS could play into that. it may be worth looking into, maybe there are things suggested for it that may work with her.

if your schedule isnt detailed down to the minute, it may be a good idea to consider doing that. even doing a reward system. you can break each morning down into parts, get up at 7:00, get dressed at 7:05, brush teeth at 7:15, etc. for each item she completes WHEN she is suppose to complete it, she earns a star or sticker. allow her to trade those stickers in for special things, a trip to a zoo, a new game for her ipod, etc.

does she have any down time at school? is it possible to get her time to "veg out"? even just a 20-30 minute timeslot when she can rest and relax and be away from people. lunch or recess maybe? schools often see recess as down time, but for an autistic child, it can be even more chaotic and stressful than the classroom. i know her class is small, but 6 may as well be 60 if she is already overloaded and/or overstimulated.

i would agree with the others that the positive thinking, while it often works with nt kids and adults, isnt doing anything to affect her reality. autistics are very literal minded and black and white thinkers. to you its not lying, to me its not lying, but to her, it probably is. more importantly, shes saying how bad it is for her, and the one person in her life who matters is clapping her on the shoulder and telling her its going to be fine. if someone did that to you right now, im sure you are adult enough to realize that they are right and you will make it through this somehow, but its not going to actually make RIGHT NOW any better. it may even make you feel worse for a bit since you realize you dont know when its going to get better. she probably feels the same way.

one last thing on my mind is how exactly is school affecting her? why is it so traumatic? has she shared anything specific with you about it? too noisy? too cold? people talk to her too much? lights too bright? maybe if you can narrow down what some of the more offensive parts are, you can see if there are accommodations that can be made to ease those parts.