Screwed up system

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Sorry this is a bit of a rant.

Whilst I sit here feeling really proud of my aspie son and so in awe of his personal understanding of his difficulties, I'm also really cross with how the education system doesn't recognize his very real challenges. I know this subject comes up a lot. Every now and then though it really gets to me.

J my 12 year old seams to have a very insightful understanding of himself. He is able to tell me most of the time what things are bothering him, what he feels he needs help with etc etc. He also has a very strong need to be portrayed as being "good" and "well behaved", he feels that if he was to be anything less than "good or well behaved" most people wouldn't like him.

I watch my boy every day going off to school and I personally feel bad most days. School is not designed to meet my sons needs. It's obvious to me, and J himself tells me this. I see the toll it takes on him. Don't get me wrong there are some parts of the day that J really enjoys, but they are only very small parts. It is because J tries so hard to fit in, and to be accepted, and to be a "good "student that he isn't funded. He doesn't have his own aide and a lot of the time his needs are over looked.

A prime example of this; Another aspie boy hits J in the face at camp 5 times. J is obviously very distressed he asks a teacher if he can call home to talk to me, he is told "No". I am not told about this incident by any staff member, either during camp or at camp pick up. J tells me when he finally gets home. The boy who hit my son was consoled because he was stressed that J was talking to another child, his mother received a text message telling her; he'd had an up and down day but he was fine now. No mention that he'd lashed out at J. J and this boy have in the past been very good friends. I question J's teacher on the incident the next day he is at school, her reaction is "Oh I thought he was over that, I thought he knew why that happened, he sat with him on the bus on the way home". Yes he sat with him on the bus on the way home because 1. that was where he sat on the way up to camp. 2. because he was to scared not to, he is scared of upsetting this kid again in case he gets hit again.

Another example: Educationally J is struggling in many subjects specially maths. There are other kids in the school (aspies and auties) that are doing much better than J educationally wise,some even emotionally as well. These other kids have their own aides J doesn't. One aide does sneak in help when she can (bless her for this) Why do they have aides? Because they got their dx's when they were in prep (kinder) and or because they don't internalize their stress, they yell and scream and cry. J got a late dx, he internalizes everything, because if he were to really let people know how he felt by acting out that would be "miss behaving and breaking school rules".

It makes me so sad when J continues to tell me, "mum I want an aide, someone to sit with me and tell me what I'm meant to be doing" My response is " J every one believes you are to clever to need an aide and you appear to be coping really well". J's response to this "They don't understand how hard it is every day, I get so tired being good. It's hard work going to school every day." Then he goes on to say "so the good kids get punished by not getting help and the naughty ones get help!"

I need to stop now I'm only upsetting myself more. It's all just so frustrating, but I'm sure most of you know this already.

That's heartbreaking. I'm so sorry.

Do you have the ability to talk to the aide that is helpful toward him? Perhaps she might have and idea on how to get the school to address this. (Maybe even help you?)

I would certainly explain to the school what they are inadvertently teaching your son.

Chin up!

I have done all that. The aide helps as much as she can. J trusts her and has told her how hard it is for him, but she is only in 2 days a week.
The other teachers in the school seriously think he is fine and doesn't need any help. It's so frustrating

have you ever insisted that he get an aide? maybe call a meeting with the special ed board member and tell her exactly why he needs an aid and exactly how things are effecting him even if he isn't verbalizing it to the teacher. i never had trouble getting an EA for my step-son. in fact we were told to keep him home from school until they could figure out how to get the money to get him an EA because they couldn't handle him. my younger son was also given an EA because he has behaviour problems and i wasn't even notified that he had an EA until i asked because he told me about it. i know from talking to other families though that sometimes the parents have to demand it and threaten to pull their kids out of school until they can meet the childs needs. some have had to get other social workers involved and have them also say that the child would do better with the extra help. it's true that the ones that suffer in silence are the ones that get left behind, because there doesn't appear to be a problem when they act like nothings wrong. you are the only one who can make them give him extra support if they aren't willing to set that up on their own. maybe they don't see how big of a problem it is for him.

well, crap...

Personally, my next step would be "hate mail".. which doesn't really help the situation, but it makes me feel better!! !
Of course, I always wuss out and never send it... which explains why it never works..

Did I mention it makes ME feel better?

We are in exactly this catch 22 with our sons as well. I feel your pain. My sons are incredibly polite and well behaved, and they internalize their stress too. They white knuckle through their days and then have a meltdown the second they hit the car on the way home. I finally have the school convinced that they need more than they appear to need, and so they are receiving extra support at school and this has helped immensely, BUT try as we might...appeals, autism education specialists working on our behalf, turning over every stone...they do not qualify for an aide, even though every one who works with them strongly agrees that they need one (one son in particular). They simply do not meet the criteria because they aren't aggressive, disruptive to the class or cognitively delayed. So it doesn't matter if they are in misery, as long as their misery is quiet. It doesn't matter if they are in the bottom of the class, when with their abilities they could/should be at the top, as long as they hang in there on that bottom rung that's supposed to be OK.

It is almost as if we "shot ourselves in the foot" by working so intensively with them on manners, handling their emotions in socially appropriate ways etc. I guess we should have never taught them not to punch other kids, eh?

The best advice I can give is, after you've exhausted every avenue in the effort to get your son an aide and if the answer is still a no like it is for us, work with the school to find strategies to fill that gap. We have been very fortunate in the fact that our school is just as frustrated as we are with this lack of funding for an aide. They do perceive the need. This is after many, many incidents like the ones you mentioned above, where I had to keep going in and breaking down the failure to meet needs, so they could actually see it, instead of just thinking my son(s) where doing "fine" because they were quiet. So I work with the resource department and teachers to come up with plans to meet their needs, and the school has allocated some resources to have an aide with my son who needs the most help on an occasional basis, and even this helps him so much. It isn't perfect, but we've cobbled together a handful of strategies that help to ease their stress, and I now feel like I have the school aware of the needs that they weren't seeing before.

I would kick up a HUGE fuss over one of my sons being hit in the face and then told he couldn't call home/no one contacting me over the incident. HUGE fuss! The very first and basic thing is for a child to feel safe at school. They have failed to do this. We actually made this one of the top goals in one of my sons IEP this year. That he would be supported in feeling that school is a safe place, and actively helped to manage his anxiety at school. This has really put the onus on the school to make sure he is OK, instead of just ignoring him as he white knuckles and then crumples in misery when he gets home. Anyway, gosh, not sure if I've made much sense, and I am sure you are already doing the things I advised. Just wanted to say that I get your frustration. I am so proud of how polite my sons are and how their self control and maturity has grown, it sucks that they get penalized for it, doesn't it?

I agree, screwed up system totally. We have the opposite problem, my son is okay with academics (average or above average student) however we were constantly offered aids and special services. We even left public school because of that (don't want my son to get used to manipulate the system). I asked them several times why they feel they "need to help him learn" when he is, as his teacher said, average student and there are many other students that are way behind. The response was "well he gets it now but in the future he will have problems". That doesn't make any sense. The truth is that his teacher was scared of him since he was unpredictable and lost in his own head most of the time.
Probably the solution would be to fake "autistic" behavior but it is silly to ask a child to do that. The other thing is that if you let your son to be hit and not make fuss about it, they probably perceive you as weak and easy to get by. You need to stand up for your son and let them know what you need for him and you. They are there for you and not vice versa. Your behavior is setting the example for your son and that is what is even more important than just an aide's help.

Thank you every one who posted. Believe me the incident with the hitting has been raised with the school, J ended up in tears and angry, he didn't want to talk about it.
I asked his Wednesday group teacher (autism trained) for advice on how to help J and the other boy (who is autistic and his behavior is escalating, I am friends with the mum and the autism teacher knows the other boy well) Again J was in tears. J just wants to forget and avoid the whole subject and child now. Doesn't help me not be cross with the school.
Don't get me wrong this school do know J has issues and struggles with some things, but they are looking for the stereo typical explosive melt downs and the acting out. It's because they can't see past what is typically written about aspie behavior, they just aren't noticing the little things J does on the surface which indicate that much bigger things are going on internally. They accept no responsibility for what happens once he leaves the school yard, ie the unwind meltdowns/shutdowns.

Alice; what you described about your boys, is J to a T. And yes I do feel sometimes that I have done J a huge disservice by teaching him manners and social etiquette.