What am I to do? Why wont they listen?

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Hi all! You are probably sick to death of me sorry.

As some of you may be aware J's doc's and myself met with J's school last thursday, and we were flat out told no aide. When asked if something could be put in place so that J has some where to go during playtimes when things got to much for him, we were offered knitting or drawing club. It was suggested that I meet with J's teacher within the next two weeks to discusses what supports he may need, go into more details on how J's dx effects him etc.

I was not very happy with the out come, but I was a good girl and left it alone over the week end. Until today. J's school swimming started today and I had to see his teacher any way, so I asked her when did she think we could have that meeting. Well she has meetings two nights a week, and she said she was real busy with the kids doing swimming so it couldn't happen till after swimming (swimming runs for 2 weeks) she went on to say parent teacher meetings would be happening soon to, before Feb finishs (talk about feeling like an inconvenience) So I didn't lose my cool and asked well, did she think she could make my parent teacher meeting longer then perhaps. Oh yes she thought that was perhaps the best idea. Hmmmm.

I went on to hand her J's asthma medication, I explained to her he doesn't always need it, but he often complains that he can't breath whilst at the pool. I told her that it has even happened before any exercise. He is being investigated for asthma, the doctors aren't sure if it is asthma, panic attacks or sensory or even a combination of everything. Give it to him if he needs it. Yep yep yep she got all that.

I pick J up from school and he tells me he had a bad day (with a smile on his face). Why did you have a bad day? " because I got in trouble at swimming, I wasn't ready with my bathers on, the swimming teacher said to get ready but I didn't know." I then asked him if everything else was ok, "you didn't need your puffer?"
"Yes I did" he tells me, "but you didn't give it to me mum."
I told J that his teacher had his puffer, he needs to tell her when he needs it, or tell some one else. ( I told him in the morning I was giving it to his teacher to look after)

I look in his bag before I leave the school, just to make sure he has everything. His puffer isn't there, so I go find his teacher to get it off her. She tells me he was fine he didn't need it. I said he tells me he did need it. She says but he didn't tell me. I say no he wont. I hear her saying to me as I go get his puffer from the class room, "well what can I do if he doesn't tell me?"I dont say these things but I'm thinking WATCH HIM!
Listen to me, so I can explain what to look for.

I can see why you are so mad!! !! Ring the Principal in the morning! OMG I would seriously flip out if that happened to my D. That teacher is both not professional but uncaring, negligent to a point and needs a good talking to! BIG HUGS and stay strong!

I'm not a parent, but I really feel for you. I am upset for you! This could have been potentially life-threatening - why can't that teacher realize this? How frustrating...your son must be really stressed too. I am so sorry.

Can you approach the principal, another school facility, outside assistance? What a mess. Hope your son feels ok...and you too.

Not hardly!

I just wish I had something to tell you.
Sounds like a situation I might get loud about, while you kept your cool.

How frustrating!!

What worked for me last year was frequent e-mails to the teacher and cc'ed to the Vice Principal and Special Ed teacher. In your case I would also cc it to the evaluation team.

I found I was so emotional I was better off e-mailing. In person I became too emotional.

Fortunately the Vice Principal was excellent and things improved.

So, e-mail is your friend! Copy what you wrote onto an e-mail (just take out emotional language). I made my e-mails firm, but not emotional.

Good luck!
Helen

I email all correspondance too and cc all sorts of people! It's amazing how quickly things can happen once the cc is put into action!

I know exactly what you're going through aurea - it's awful when you're made to feel like a nuisance. I made the decision last year that I was going to be an inconveniance and a pest and that I wasn't going to make any friends out of it. Now the P and the VP and I manage to smile grimly at each other.

Hugs,
Temma

so terribly frustrating dealing with schools........what about calling the school nurse ?....my daughter's school nurse would've had a field day with that teacher~reamed her out for not using the inhaler !

Ster has such a good point. You can make allies for your kid all over the school. I've been damn sure to know all the aides in the classroom, the school bus and the floaters who take kids from mainstream class to mainstream class. They can be so incredibly useful if they understand your kid and trust you as a reasonable, active parent.

I feel your pain. I'm not sick of reading your posts, but you're probably sick of hearing me say this why I started homeschooling. It's true. I've been there and got no where with those school people.

It would be nice to be able to talk to the vp, but she is not a very sympathetic person.
There isn't a school nurse, the office staff also do sick bay duty.

I came away from the first meeting we all had together questioning everything, because his teacher said she doesn't see any differences in him. I told them he feels he has to pretend all day and he can't be himself, his words not mine. He told the doc's during his evaluation how unhappy he was socially. I mention, as do the doc's that he is finding it hard at school with the other kids. The vice principle says that he has never told them he has had problems. I said "well he is!", I have heard the kids say stuff. She says not here. I said yes here. I have had kids come up to me after school and ask me why is J weird? There was no time to say;
For the first two years of school when I went to pick J up, kids would come out before he could even get to me to tell me how naughty he had been. ie J didn't listen today, J talked over the teacher, J wouldn't sit still, J didn't finish his work, J did this, J did that. This would happen daily. Last year he was coming home telling me that the kids at his table were telling him to "shut up" all the time, they told him he was annoying, frequantly. He would sometimes have someone to play with at lunch time, then someone else would join the group, change the rules or the game entirely and he would be pushed aside. I tried to play chassy with him one day at the park, he said no he didn't like that game. When asked why not, because when he plays it at school the other kids catch him first because he isn't good at running, so he is "it" all lunch time because he can't catch the other kids, sometimes they run away and he can't find them again.
In the past when another child has been mean to him I have always told him to speak to the lunch time teacher, he used to but he has told me that the other kids get there first or they confuse him so he mess's up what he meant to say. He has gotten told off for other kids behaviour, he has been told (as have I) that he needs to learn to deal with it/he needs to take responsibility for his actions etc, etc.
So what I am getting at is he has learnt there is no point to complaining. He has also learnt to not cry or draw attention to himself, this can lead to more teasing and it gets him no where.
I told them at the meeting, that J is a bit of a perfectionist. He came to me after school the first couple of days back, saying that he didn't do very good today because he messed up his work and there was no time to fix it.
J hates conflict and he certainly from what I gather by what he has said happens at school, wont start anything that may cause conflict himself, he doesn't feel safe at school he gets easily confussed and starts to second guess himself.
He is the first to tell me if he thinks he has done something wrong.
He loves to learn, he likes rules, he likes structure. He has learnt not to draw attention to himself, there for doesn't act out at all. Will put up with what ever is bothering him till he gets home, then he wont talk about school, has phases when we can't even touch him, has phases when he will cry at the drop of a hat/ get angry at every thing etc. We have learnt the best way to deal with the after school stuff is to just leave him alone, he usually will play one of his games or on the pc for hours to unwind.
I have started to second guess everything, I am becoming paranoid. The school tell me he is fine, I went so far as to ask a ex psych nurse friend of mine, if I am being paranoid and imagining all his problems. She got very angry and said No she can see things going on to. She has a border at her house that was an intergration aide years ago, he had only ever met J at that stage less than a handful of times, he apparently after we left her house one day asked if J had ever been diagnosed with anything. At that stage we were going threw the evaluation process.
I never suspected autism, I knew J was different but I had come to accept it, I questioned in my own mind ocassionaly if J was even "all there", I thought he was from time to time extremely dramatic and would worry over the silliest things, he had some very odd habits and he can talk in an american accent sometimes(we are australian)
I went to our regular peadiatrician visit, this was about our third visit with this guy, our old pead had left (she had dx'ed him adhd two years ago, a dx that I had to talk myself into, I didn't believe it. I origanly went to her to see if he was vitamin deficiant, he was falling asleep inclass, he was pale he was recovering from glandular fever, I wasn't looking for a dx at all let alone adhd, sure he was difficult, sure he is diaorganized, sure his attention strays, sure he is in your face, sure he hyper focuses, sure he talks a lot. Who was I to question a doctor, perhaps that explains J's odd ways. That pead wanted to put him on meds, I said no, his behaviour is always worse when his routine is changed.)
He asked me on the second visit (the new pead) if J was in a special school. Huh! Why would he say that? By the third visit, he asked me if anyone had suggested autism.
I keep telling myself during paranoid moments ( which at this stage are frequent). I didn't go looking for an aspergers/autism dx, but it found us. I have to tell myself, I am not the only one seeing this, friends see it, family can now see it, doctors see it. I'm going crazy, My one question is Why can't the school see it?
I really worry about what this is doing emotionally to my son. I wonder what is really going on at school?

I'm so sorry I really went on and on this time. I needed to get it out. Am I going crazy? Have any of you been threw this same stuff? Is it possible for J to be one kid at school and completely different outside of school?

Thanks for listening. aurea

i'm sorry if i missed this answer, but can you change schools ?

aurea, you are NOT being crazy or paranoid! Vent away. That school in general sounds very uneducated to me.
Can you ring J's Paed and tell them what is going on at school?
Like someone else suggested, email the school and cc to the paed and anyone else 'big' you are in contact with.
Forget the VP , try the principal or the schol board or just go straight to the top like education dept.
Stay strong aurea!! !! !

I went through that whole thing. When my son had good days, the school would say that there's nothing wrong. When there were bad days, they were scratching their heads and saying they couldn't figure it out. Only they knew it was autism all along. They had seen kids like him before. I don't think it's possible for your son to be on the spectrum at home and NT at school. He has good moments at school and then they expect him to be "good" all the time. That would certainly be easier for them.

I don't place any faith in principals and vice principals. They are interested in protecting their budgets. Special needs = money they don't want to spend. They do not want to give your son an aide because of the $$$$$$.

Not at all. My 9 year old had a crap teacher last year who denied that he had Asperger's and put it all on to me eg Mum is anxious and he's picking up on my anxiety and if I'd just calm down my son would be okay.

A new cure for Asperger's ...... medicate Mum!

Sorry, I'm getting off track.

It sounds like the school is not doing their job ... through laziness, ignorance .... I don't know.

I was lucky with our sons' school, but would have changed schools if the school had not done the right thing.

I would try going as high as you can in the school's hierarchy - you need to push the right person.

In the meantime, do you know other parent's with kids with Asperger's. Start investigating decent schools in your area who would do the right thing by your son.

So ... Plan A: keep pushing the school and fighting for your son.
Plan B: change schools if no joy

Let me reiterate .... you are not going insane. You are a fantastic Mum fighting for your son.

Good luck
Helen

My heart REALLY goes out to you, seriously. Your story sounds very similar to ours in many ways. We feel we are FINALLY getting the attention and services our son needs, but not before things had gotten to the point where he says he feels like no one likes him, he's constantly in trouble, and no matter what he does, even if he takes his medication, he can't be "good enough" to please his teacher (who tells me she herself has a grown son with AS). He has only one friend, the rest are kids who want him to play with them sometimes but these kids have no supervision and run loose in the neighborhood, and our son isn't able to stand up for himself when these kids do stupid or dangerous or cruel things. He's easily taken advantage of. He gets very upset when other boys stand around stomping grasshoppers or ants, for instance - he loves insects and all animals. He will carry a spider or a cockroach outside our house and set them free. I really love that about him. But most "normal" little boys, apparently, delight in torturing small creatures, and my son finds this horrific. (He is nine, btw.)

Anyway, despite having a 504 plan for two years now, and putting him on medication, and despite the fact that apparently our school has a "model" autism program (which we somehow were never made aware of?), he was only diagnosed last month by the district psychologist. He said our son tests as having mild to moderate autism, with many traits consistent with AS. We were so thrilled we could hardly stand it, just to be finally taken seriously. Yet also puzzled as to why we never knew about the autism program, or why all these tests weren't done two years ago. All of his teachers have reported the same behaviors, and if he misses a dose of his meds he gets so "out of it" that the school calls me to come take him home.

I hope his next school is fairly well equipped to accommodate him. I'm told they do have a program for kids with autism and AS, and now we have documents that declare he should be eligible for those services. So we are cautiously optimistic at this point.

I think I would find another school if I were you, if it's any way possible. At least demand - IN WRITING, this is VERY important - that your child be formally evaluated by the district psychologist. I spoke to someone at our local autism alliance group, and they were very helpful in coaching me on what to say and what to request. I find writing or emailing is best for me, because I sometimes get a bit emotional. We went back and forth with teachers and administrators at this school for three years until I gave them a formal letter requesting my son receive testing and immediate evaluations - then what do you know? The principal called me on my cell phone THAT afternoon. And my son was being tested within 2-3 weeks. We got the results about 2 weeks after that. Suddenly people are MUCH more willing to listen to us. And our son's teachers were present for the meeting where the evaluation results came out. They can no longer claim ignorance regarding his condition. But I see I still need to communicate with them more, via email.

GOOD LUCK!

Just to up date all.
Our internet expired so I have bought a few pre paid hours. J's doc's aren't happy and will be perhaps sending in their expert teachers to do an in school asessment and offer the school help if need be. Firstly they want to establish with his current school why they havent called the autism resource worker. We want to avoid moving schools if we can. J's docs are thinking he has learnt how to act normal enough to fool an untrained eye, however he cant keep this up at home and he is exhausted. J's docs also want him checked for possible seizures. He has been doing this weird thing with rolling his eyes to the back of his head then swaying to one side, ocassionally falling to the ground. All this is done with no facial expression. My sister had epelepsy as a child. So maybe we have this to look foward to as well.
J has started a social skills club with the local autism school, he goes there on Saturday mornings and he loves it. He will be attending an arts class with the autism school for one day as a trial for now, with hopefully the aim of enrolling him for a while longer. So things are on track, just hoping his current school will start doing their bit. any way cheers all