Just me thinking out loud.! (long)

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if you don't want to read such a long post thats okay, I am posting this because I thought it would help get a few things clearer in my head. If anyone wants to add their opinions,thoughts or ideas please feel free. I'm not sure if I'm going to copy all this off yet so I have a rough agenda or not. cheers aurea xoxox
My son J is 12 he is in grade 6, so high school next year. He is in a new classroom this year and appears to be the happiest I have ever seen him at school. I seriously didn't think I had that much to worry about this year, his new teachers seam to be very supportive and responsive and J seams happy. I thought I would just need to tweak a few things, just to make sure things kept rolling along smoothly. Now I'm thinking perhaps I'm delusional. I think because J has appeared so happy, it's helped to cover up some of the under lying issues. I'm having a quick meeting with J's teacher on Wednesday, the vp has suggested I bring up some of my concerns at this meeting and fill her in a little more on J and his personality, so that when we have our student support group meeting she may have some clearer ideas on how best to support him.

1. writing, the physical act of writing is tiring and actually hurts his hands and arms
I introduced a dictaphone to help with this, but no one else uses one and he doesn't like to draw uninvited attention to himself. He also needs to be shown how to use this during school time and how it will benefit him.

2. Change, J dislikes ALL change. He is resistant to all new things (dicta phone included) including new students, new time table, new routine, new things to learn etc etc..
3. Meltdowns, J doesn't have public meltdowns so it's hard for others to recognize when he is stressed, he has what I sometimes call "internal shut downs" . His mind goes off to a "safe"
place or he just follows the crowd but is quietly (internally) screaming out for help and peace.

4.Wandering off, J has never done this at school before, however, I was 5 minutes late to pick him up from school 2 Friday's ago. I am usually just outside his classroom. I arrived and searched high and low looking for him at school. I was starting to panic. Then I spotted him standing with another child that I had said hello to on my way in to the school yard. He was outside the school yard. He couldn't find me after school and had wandered down the road looking for me. To most this would be no big deal, after all he is 12. He is a 12 year old with NO road sense no matter how hard both myself and his autism respite teacher have tried to instill it. He will also wander off/talk to strangers. He told me that he was thinking about walking home. That means crossing 3 major roads as well as a few smaller ones. Then he said when he seen the other child I had already spoken with, he was considering going to her house. Thank goodness she told him I was at the school and he had to stay there.

5. Maths is now a new favorite subject, J informed me the other day that maths which he struggles with and hates, is now one of his favorite class's. Why? because he mostly just draws. I think he only does work whilst a teacher is standing there with him, as soon as the teacher has moved away, he draws.

6.Story Writing, this is something J used to like, because his previous teacher would let him draw his stories comic book style. I'm not sure if he isn't allowed to do this now or if he doesn't feel like he can do this now, but apparently yesterday, when the class were given free reign to write their own stories, J quietly put his head down (so he would look like he was writing) and he cried. He told me "mum, I can't just think up a story like the other kids do. I have a bad imagination (so not true). I just like to dream". I suggested he use his dictaphone and recite a dream into that. No this is not what the other kids were doing.

7. Normal school vs Wednesday group (autism respite program) J tells me the other day that normal school is a waste of his time, my time and the teachers time. He informs me he gets absolutely nothing out of being at school. He gets much more out of his one day at Wednesday group. He learns to draw, he learns about things that interest him, he can be himself, people get him and he learns useful life skill things at Wednesday group.

8. Urinary/toilet problems, J has ongoing urinary problems (he has a surgically made urethra) difficulties in this department had been getting fewer and further between each problem as he got older, however within the last 7-10 days the problems have interfered/bothered him twice now, both times so bad I've had to intervene once I've gotten him home. Thursday, when I picked him up from school he complained that he was having issues, he wanted to go straight home so I could help him and he could use the bathroom at home. I told him that I absolutely had to make a stop on the way home, so he had to use the school bathroom first. He was in a panic and said no it was to disgusting!! !! So now I'm left wondering if his problems are cropping up again because he is refusing to use the normal school bathroom? There is another single bathroom which I got special permission for him to use on Thursday after school which J was okay with, I don't know how the school would feel about giving J permission to use this bathroom all the time.

For the moment, I think I will stop here. I'm sure as things crop up I can add to this list later.
cheers to all who made it this far.

OK, he made it to SIXTH grade like that? WOW!

If he can't do a subject, try to get him tutored. If he CAN do it, let him. In any event, make it clear that math, language, etc... ARE needed, and tell him WHY!

As for the urinary problems? Wow. Ask for a private place to change(assuming it is obvious), and go sitting down.

I can relate to the bathroom being dirty. Outside of my home, I ALWAYS wipe down the toilet. If the bathroom is REALLY bad, the school has to do something.

Steve

I have to say, I smiled at your response Zukenkerl. I guess I have to or I would be a mental health mess. You also need a big CONGRATULATIONS for getting threw my whole original post.
Yes he has made it to sixth grade ( he did repeat grade 2 at a previous school). Apparently he doesn't even qualify for an aid, his current school did try for funding but were knocked back. There is an aid in his room from time to time for another child, and she try's to help my son when she can. His new teachers for this year seam to be really responsive, his main teacher is completely new to the school. I've had a few brief conversations with her and she seams to have a better grasp of ASD's than most other teachers I've come across, so I'm hoping that once I can actually sit down with her properly and fill her in, we can work out a game plan.

The urinary problems aren't him wetting his pants. He has a surgically made urethra, which concertina's in on itself from time to time causing urinary blockages, (he's had approx 9 lots of surgery to try to rectify the problem, now it's just a waiting game). He has the constant urge to go but nothing will come and it is fairly painful and extremely irritating for him. I need to put him in a warm bath to help relax every thing.

I'm fairly certain outside tutoring just wouldn't work. This is a boy who won't even do half a page of home work. If I force the issue we have major self destructive meltdowns and nothing gets done anyway. School is for school time, home is home time, the 2 worlds just don't/can't be crossed. I'm sure that if he had some one on one help at school he would be a lot further along academically, and he wouldn't resist the help at school. The problem is he doesn't understand what is being asked of him at the moment.

My son has 5 clinical dx's. Aspergers Syndrome, ADHD (combined type), OCD, GAD and tourettes. He was also diagnosed prior to everything else with, CAPD.

Actually thinking out loud has helped make it clearer in my head what line I need to take with his school now. Actually looking at his dx's and then looking back at the issues, its any wonder he is reacting the way he is.

I know how hard it is to get services for your kids and school will tell you that your kid does not qualify because they may not have the funding or want to spend it on you. Also at the age your son is it could possibly embarrass him to have an aide but, he really sounds like he needs one. You may try talking to him and asking if it would help to have someone to help keep him on task and or help him when the schedule changes, ect. If he wants and aide than I would really push and downright insist that they school provide him with one.
I have one with classic autism and one aspie and they both have aides. My son (aspie 8 years old) wants his aide and would even like her to be with him on the playground watching from a distance because it is there that he feels unsafe. He does not feel comfortable around the other children and sometimes it is just too loud and crowded for him. Some of the kids have purposely tried to hurt him and one time we actually had to take him to the emergency room because he was pushed into one boy by another and it split his lip nearly in half. We are moving him to another school next year that has a autism program....but that is more my story than yours.
When we lived in the US they told me that neither of my children would qualify for an aide....we live in France now and even though we have had to wait and sift through mountains of paper work my kids are getting more services in school. If I were still in the US I would have to really fight hard for what they have now but I would get it. Im not sure where you live but I know, even here, you sometimes have to really fight to get your kid services because they dont want to spend the money. In my opinion its sort of like bullying on their part....Your child does not qualify.....I beg to differ!
EDIT:...I see you live in Australia....strange thing, I heard that the UK and Australia are supposed to be way ahead of everyone in Autism assistance but what I hear people saying is just the opposite. Like I said, its hard here because of the stupid paper work and there is not just one place that handles things, there are a few different ones and they dont work well together and between them all tend to loose the paper work....annoying!

yes we are in Australia. I think it depends on where you are in the country as to what services you get.
As to pushing for an aide, I've pushed and pushed. I rang, emailed, begged and lobbied the education department I even wrote a long long letter to the then federal minister for education, who now is the Australian Prime minister, Ms Julia Gillard. All to be told "sorry your son doesn't meet the criteria for the program for students with a disability".

I personally think if he was a behavioral disturbance at school it would be a different story. My son suffers in silence at school. His current school have been trying their best to support him, he gets almost as much support as the kids that do have funding only he doesn't have the benefit of funding which would give him regular assigned aide time, which he desperately needs and even wants, he has told me on more than one occasion "mum, how come I don't get extra help? I try to be good and follow the rules but I don't always understand the work". It breaks my heart. Especially when he tells me that because I'm his mum I have to tell him he is clever, when every one knows that he is really dumb!

Wow, that really sucks...and I know what you mean when you say that it seems the only ones who get help are the ones that cause trouble. Some people think because my daughter does not have daily or hourly meltdowns she is not Autistic. Also they are always going to get help for a kid that is driving THEM crazy but that is just selfish, not mention unfair to the kids who follow the rules but need assistance.
My son tells me things that break my heart too like, "I wish I could go to a school where the kids were nice". The other day he said something that was both somewhat amusing and sad, he said "kids pick on me but its ok because I get lots of exercise that way" (running away from them). He also tells me its ok if other kids dont play with him because he likes his own games better.
I think they really need to step up the assistance for Autistic kids everywhere....even though my son does have an aide she knows nothing about Asperger's. We have had to teach her how to talk to him because she was upsetting him a lot by being over critical of his work and grabbing his eraser and erasing things that he had written wrong. We had to explain to her that he was already really hard on himself and by doing that it was making him feel 10X worse. We told her when he makes a mistake to tell him" that was a good try but lets try again."
I doubt I will even leave my kids in school once they reach a certain age. I think if my son continues to get picked on its just going to drive him deeper into himself and Im not going to stand for that. I would rather home school and get help from tutors, even If I have to pay for them. I hope you find a solution for your son and please dont stop trying to get him help....if all else fails you can always threaten to go to the press and see if they will run a story on your son....that might scare them