Feeling VERY uncomfortable with this, advice please

[claw2]

I emailed ds's class teacher etc, after he wasn't able to attend last week after the first day back, as he was so distressed when he returned from school and didn't sleep at all night.

I told them from what ds was saying, he seems to be struggling with his understanding, particularly with the more abstract subjects ie not knowing what he is suppose to be doing in science/RE/languages, not understanding the questions, not understanding the explanations and feeling very confused by it all. Also struggling with social situations and unstructured times ie playtimes and PE and feeling bullied, 'unfair' due to him struggling with social understanding, unwritten rules, changes etc.

Class teacher has replied "It is interesting that he does not present the same anxieties when he is in school and, generally, manages the times that you have described very well indeed. Playtimes in particular often appear to be a strength. His perception once he is at home appears altered from the reality

Ds has autism ffs, I think what he describes is fairly common with children with autism. They seem to be implying that he doesn't have these difficulties and cannot distinguish reality.

I feel very, very uncomfortable with this, as rather than helping him with the things he is struggling with, they will be treating him as if he is making it all up.

How do I reply to this email? I am really losing patience.

I just wanted to preserve DS's mental health and let him have some semblance of a childhood before the opportunity was gone forever. It's a much more productive use of my time to devote it to DS than continually waste my efforts on carrots.

I'd almost be tempted to email back 'yes his perception of reality is different, welcome to autism world, however your insight doesn't really address my problem of how to change his perception that he is struggling or manage the excessive anxiety he brings home with him. Personally I don't find his different perception 'interesting' but rather hugely demanding and stressful. What programmes of work do you suggest to address his problems with inference and insight as I think it would be helpful to make this the main focus of his next IEP.' Or in other words right back at ya **

Thanks Agnes, I will scribble that down and use some of it in my response.

Unfortunately I have to explain, everything in very simple, easy to follow format. I have to explain the difficulty, then the impact this is having on ds (even though they see it with their own two eyes) They don't seem to be understanding the WHY or WHAT to do about it.

Literally the last few weeks before half term, I was called to pick ds up several times as they couldn't calm him down. According to message from TA, he was 'struggling and not able to partake in lessons'. He was excluded from school. We had a meeting, they agreed he was struggling etc and we had a 'plan'

First day back, came home really distressed from the moment he got home, I couldn't calm him down either and this continued until 6am next morning. So I didnt send him and explained why. Yesterday I struggled to get him to school.

I am finding this class teachers email a little confusing and total turn around since last term. Maybe as annual review is due next week, I don't know.

Mrsdevere, that is what is really strange, we HAVE established he has x, y, z difficulty by his behaviour in SCHOOL. We had a meeting about his behaviour in school. SALT, OT, counsellor etc are ALREADY involved.

Im not asking for 'additional' help as he already has it. Im just asking them to do their jobs. The difficulty seems to be, they don't know what they are supposed to doing. No one seems to know.

I am very tempted to use Agnes letter myself. Ds came out of school tonight and ta said"you had a good day today didn't you" ds said "yes". As soon as we got in the car he told me what really happened and when asked why he didn't say that to ta he said the other child's mum was there and he didn't want to hurt her feleings!!! No thought to what he had suffered all day!

Mrs Devere, it is and thank you your support is much appreciated, just being about to talk to others who 'get it' is a relief in itself.

Scottish ds's counsellor has recommended we all 'challenge ds's negative thinking' So ds says he has had a terrible day, we are to reply no you haven't. If ds is displaying physical signs of anxiety, feeling sick, headaches etc and staff send him to counsellor she tells ds 'no you don't feel sick' and sends him back to class.

Im no Einstein but I would call that dismissive and I would have thought a much better approach would be helping ds to recognise the signs of his anxiety and give him the strategies needed to help him cope ie yes you are feeling sick, this is because you are worrying, a) what are you worrying about and b) what can you do to make yourself feel better.

I have already provided them with strategies I use, these seem to be ignored in favour of counsellors 'challenge his thinking' approach, which is little more than repeating over and over he is not feeling like that, until he complies.

Thanks guys, I have already challenged the SALT on her decision not to give any input, last term. At the end of last term she agreed to give input this term. Obviously my concern is if school are not understanding what ds's difficulties actually are and keep reporting 'fine' she give them any input.

Would you guys mind helping me to get my reply email accurate, precise and cut out any waffle, bearing in mind I am having to write this as if it is someone who has never met child. I don't want to upset anyone, however I want to make it clear that what CT is saying is inaccurate, as she has copied other professionals in.

Email so far

Dear Miss X,

I am a little confused. I thought we had already established that ds perception of reality if often skewed, due to his difficulties and although this is quite common in Autism, this is having a big impact on Ds and his learning.

I thought we had already established that ds has long standing difficulties understanding higher level language impacting on his ability to follow/understand instructions. Difficulties generalising/transferring skills. Difficulties with social interaction/communication/play skills/ leading to ds feeling persecuted/bullied. Inflexible thinking and literal understanding. Difficulties understanding the feelings, motivations and intentions of others. Difficulties adapting to change

Ds's difficulties are very evident at home. I thought these was also evident in school from the feed back I get from school via emails from Mr TA for example that ds was unable to partake in several lessons, ds struggling to understand explanations etc and subsequent meetings with Mr HT etc.

At the end of last term for example ds accusing the TA of 'lying' and 'blackmailing him' and 'being abusive' and feeling persecuted as he had not understood the situation or language used due to his difficulties.

Ds threatening to 'bring a knife to school and stab' his peers. As he misinterpreted their kind words and friendly touch (patting him on the back), as threatening due to his sensory difficulties and understanding.

Although I have no doubt ds has made progress and that he is managing his anxiety better than previously. This doesn't really address the problem of how to change his perception, how to develop his lagging skills or how to manage the excessive anxiety he brings home with him.

The purpose of my previous email was to ask professionals what programmes of work they suggest to address his difficulties.

Please excuse my typos, I have had one hell of a stressful day, today. Crappy email from CT. My mum back in hospital. School 'forgetting' to tell me after school was cancelled, so me being at the school to pick him up, while ds sat outside in taxi crying for an hour and half (the time it took me to get there and back)

Then to top it all off, my glasses snapped in my bag, so I am trying to read and type with something resembling two monocle's wedged in my eyes!

I have just looked back through previous emails from last term from TA. There were several informing me of ds becoming confused, ds feeling bullied/persecuted by staff and pupils, ds becoming extremely distressed, struggling to partake in several lessons and having a bad week, languages seems to be the one that stands out, becoming confused in science and getting upset, suggesting killing himself. I had to pick him up on 3 occasions. Then at the end of last term ds threatened to kill other children and was excluded.

Im sorry but WTF is his CT talking about

Oh well done you be managed to take my sarcasm out of it . I've had a glass of wine and not necessarily good judge but reads ok to me.

Oh good I will go for done, rather than perfection and send it in the morning!

I am so pissed off, what ds 'reports' at home, is exactly the things that his TA reports he struggles with via email.

I suppose it is possible that the TA and class teacher do not communicate and she just isn't aware. Being an indi school, ds has different teachers for different lessons, so I assume she isn't always about. She is a fairly new teacher too. So maybe benefit of the doubt, but I am surprised that she didn't speak to the TA, as he was copied into my email, before she replied.

Hi claw I'm sorry to hear you are having such difficulties with these numpteys. I don't have anything useful to add but wanted to show my support, you have given me some very good advice in the past.
I hope you get somewhere with your email.

Hi Sky, thank you support is very much appreciated.

I am just struggling to understand how we have arrived at such a 'mismatch'. He only went back to school on Thursday! Prior to this school were emailing me about bad days and bad weeks, describing exactly the same thing that ds says he struggles with. Last term I was asked to come and collect him several times, because they couldn't calm him down or he was in such a state, feeling sick, not able to breathe etc. Then just before half term he was excluded from school, as he was having meltdowns on a daily basis and we had to have a meeting.

Then 2 days back at school and school don't know what the hell im talking about! More importantly what the hell ds is talking about, when they have seen it on daily basis and reported it to me in writing.

I am confused as to how we got to this point!

I think saying he has no grasp of reality is horribly rude and dismissive. He has autism which does affect how he sees the world and his reality may be slightly different to someone else's BUT he knows exactly how he is feeling and if he is struggling or needs help even if he doesn't outwardly demonstrate it. The teacher is warped if he thinks he knows the reality of how anyone is feeling better than they do themselves and I would tell him that.

His grasp on reality is a little skewed BUT its due to his difficulties or unmet needs and I am very uncomfortable with this being used as an excuse a) for not meeting needs and b) for their shortcomings. It like 'oh take no notice of him, he doesn't know what he is talking about'

CT's comments actually stank of counsellor language, which is even more worrying. Especially as ds was sent to her feeling sick with anxiety and she told 'no you don't feel sick, go back to class' - apparently this is her 'challenging his negative thinking'.

The suggestions that you dismiss his expressions of negative feelings about situations are a worry. If he is already having difficulty with his perception of people's intentions towards him then a "no you don't" reply when he communicates how he feels is surely going to reinforce his beliefs that staff are telling lies and aren't to be trusted. Given his tendency to self harm, I think you need to put your foot down on this one. In an adult relationship, this would be seen as gaslighting, so why is it OK with a vulnerable child?

It's possible to acknowledge those feelings without agreeing them, even if it's just a cursory "well that's a shame, can you think of any ways we can make that better for you?" DS1's response tends to be to scream "NOTHING!" but we can tell by his reaction that his focus changes and he's able to compose himself a lot quicker than if we had completely dismissed his feelings and shut him down.

Blimey it makes no sense whatsoever. Is there a hidden reason/agenda as to why they are back tracking all of a sudden.
No wonder you are struggling, as if life isn't hard enough already.
Can you call a meeting with all involved including those that are fully aware of what happened previously something is a miss here it may help to get to the bottom
Of it face to face

Exactly Ouryve that is exactly how ds feels, staff and the children at school tell 'lies' and none of them are to be trusted. So every day he feels bullied and persecuted, by particularly everyone he comes into contact with regardless of the reality and the only safe place is home.

I am constantly disagreeing with professionals, I am trying to do so, in a reasonable way. My patience is wearing very thin and I think you are right I need to start being more assertive.

Sky I can only put it down to 2 reasons. Annual review is next week. Or school are just not understanding the why. They see the behaviour but do not think its due to ds's difficulties. They seem to think its him having a 'tantrum' etc.