School - Am I expecting too much?

[rosalux]

DS1 (5.5yrs) currently undergoing ASD assessment, but almost certainly HFA (Aspergers as was) is in Y1 at an MS primary school. He currently has a number of reasonable adjustments, including his own desk and toys in a break-out room, weekly play therapy, social skills sessions (I think) and a (pretty much) f/t 1:. As a result he seems to be doing much better than at the start of Y1, when a new class, new classroom, new (awful) teacher and new demands of the curriculum led to 3 f/t exclusions in the space of half a term.

This came as a complete shock after what we had believed to be a totally fine YR. The truth turned out to be somewhat different. Now he has a daily behaviour chart which goes from 1-10 and he gets a (sea-creature themed) certificate when he reaches 10. Some weeks he does this 2-3 times, others only once or not at all. Once he did it four days in a row. On the days he does get there he's delighted and really proud of himself. On the days he doesn't, he's unhappy and disappointed and I feel deflated and like we're not making progress.

I have no idea what the numbers really correspond to and whether a 10 is a really good day or just what most children are capable of every day. As such I don't know whether he and we should be expecting/aiming for him to eventually get a 10 every day, and if so are we talking months or years? Or is this simply unrealistic and I should be revising my expectations downwards so that I'm not constantly feeling disappointed.

What I suppose I am asking is what does school success look (and feel) like to you? When people talk about their ASD kids doing well at school, what does that actually mean in practice? No anxiety? Reduced anxiety? No meltdowns, only once a week/month/term? Is the goal to eventually eliminate additional support, or is this a recipe for disaster?

[Tainbri]

I can only answer from my experience (and I'm probably not the best person to comment tbh) my son is 12. "Doing well" for me is seeing him calm and basically his experience reflecting in our entire family dynamics as far as the happiness and (lack of stress) scales go. The whole school thing is torture for me tbh. I have a much happier child in the holiday. He's had three internal exclusions last term which far from being a punishment he likes because he says it's quiet!

[Sirzy]

I think for a lot of children if they reached the "success" point every day then they would soon become complacent and the system could lose its impact. For the specifics it is probably best to talk to the ta/teacher.

For us doing well means he is making progress at his own pace and is generally enjoying school. I would say at the moment ds is doing well with the academic side but he is really struggling with the social side which is increasing his anxiety and likelihood to refuse school or get upset

[Marshmallow09er]

I think sometimes you have to distinguish between what a school may see as an autistic child 'doing well' and what we as parents would see that as.

I've read so many stories here and other places of schools telling parents their child is doing well but actually all they are doing is coping just enough that they aren't causing an issue for the school who then in turn don't understand the imperative to support them.

Just picking up on your DS's behaviour chart. I'd probably want to know a bit more about what they are hoping to achieve by it. If it's trying to get him to change his behaviour but they are not really providing him with the right support to do it I'd feel wary.
My DS found the pressure of things like that - working towards a big target - far too pressured and he didn't really understand what he was supposed to do to reach the targets or why he hadn't, so for me it wasn't a good strategy at all. Plus the disappointment of failure was crushing and often made him explode.
That said he responds well to stickers but more as an on the spot reward.

If you don't really understand how it's working and it's upsetting him when he doesn't achieve the targets I'd def speak to the CT / SENCO to find out more.
I feel there might be other more appropriate strategies they could use but you prob need to dig deeper to find out what the outcomes they are expecting to see as a result are?

I'm rushing so hope that makes sense like it does in my head!

[youarenotkiddingme]

Zzzzz that's a great list. I'm going to print that out and stick it on my fridge!

Tain I have a ds who is 12 and says exactly the same thing about internal exclusion!

I say my DS is doing well because he's making progress. I think it helps I have a great relationship with his keyworker. So the other week when we caught up she announced how much better he's getting with throwing things. He still does but it's generally not at people anymore and isn't chairs. we see that as the work she puts in and input in at home working - he is listening and trying to adapt his responses and the social skills work is helping him communicate and get less angry.
Remember that autism is a life long condition. Although someone with autism can learn to manage inappropriate behaviours it will always take a toll. It's more a case of learning what they can manage and what they need to do to recover from that.

Perhaps a suggestion for the school would be 3 clear things they expect off DS and the sea creature being a direct reward for managing those things. Once he's managing them naturally change one and teach something else. I'm a total believer in a reward only being a reward if you're clear on what you're being rewarded for. How can you repeat a positive behaviour and learn a response if you've no idea what you're repeating iyswim?

[rosalux]

I think you're right Marshmallow09er, I should definitely be asking school more about the chart and how it operates. I like the idea of the 3 clear things youarenotkiddingme, but I suspect school may say there are more than 3 things he needs to work on!

I think if he was managing the 4 things zzzz mentions I would be happier, but I think I could cope with him being worse at home if it meant he had learned how better to manage, not mask, his anxieties at school and outside the home generally.

Has anyone reached a stage where they are not constantly inundated with negative feedback from school, or is this just a given? I appreciate that lots of kids (NT too) don't particularly enjoy school and are difficult in the classroom, without being on the edge of expulsion all the time. I just feel like he is constantly teetering on the edge. I guess I should have a meeting with school and see what is actually happening day to day. They are putting in for top-up funding at the end of May and I don't even know what band they are applying for and what this would translate as.

Thanks for all your suggestions.

[youarenotkiddingme]

Well if he has more than 3 things to work on he has more than 3. But it's more realistic to work on a few at a time. I'd frame it to school that when ds doesn't naturally learn the social norms how are they going to teach him all the ones they say he doesn't know all at once and make sure he reaches them all?
Learning social communication skills should follow the same process as curriculum subjects. You don't expect children to know all the phonics after 1 lesson - you learn individual letters and then build on it.

[youarenotkiddingme]

And with regards negative feedback I've found it can be ethos of school or certain teachers.

I have said to schools in the past that I live with ds and know what he's like! I don't need to hear it everyday - I need to work with school to improve things for him.

[Marshmallow09er]

Rosa
We've been teetering on that brink many times in the past. It's a horrible place to be as you just feel you are waiting for the next thing to happen, but until it does nothing seems to change.

The only reason I think we're not there at the moment is because DS has been on a reduced timetable for the past 7 months (he's year 3).
We've just got an EHCP for him - he already had 1:1 before that too.

Year 1 was our worse year by far in that school really struggled to keep up with just how much he was struggling himself, and also they couldn't get their heads around why this bright, articulate boy was throwing chairs, hurting children at playtimes and no matter what behavioural strategies they put in place he wasn't changing his behaviour.

I was also still trying to get my head around it all too. I'm so much more empowered now tho (mostly thanks to these boards) to understand what he needs and why.

Anyway, basically all the strategies they were using were NT strategies that would never work with DS.

Preemption is the key - they can't just put him in a busy noisy playground and hope he'll cope. Occasionally he did and they rewarded him with whatever, but it wasn't him learning to cope as it was a sensory overload that just won't go away no matter how much you rewarded him. The only thing that works is making reasonable adjustments for him to cope - so now he has playtime with 2/3 kids in the hall playing games with supervision - he gets exercise and social interaction and never hurts anyone as he's not overwhelmed.

So I'm chuntering on here but I guess what I'm trying to say is that if they are trying to reward him for behaving in an NT fashion it will never help your DS long term as they are not exploring the reasons and triggers for his behaviour and then putting in support at that level, iyswim?

And they shouldn't be trying to change his behaviour they should be making reasonable adjustments wherever he needs them.

And if your DS is like mine he was constantly feeling like a failure - he didn't want to get it wrong / get told off / explode, but he couldn't help doing that unless he was supported and understood in the right way - and then no wonder he hated school much (I mean, he doesn't love it now, but it is better as he is much better understood - but it's taken private OT and SLT reports to really be able to do that).

[rosalux]

Marshmallow09er your DS sounds very similar to DS1. And school have really struggled to comprehend how and why such a bright, verbal child can get so uncontrollably upset and then angry/destructive over seemingly minor issues, like not being picked to take the class toy home (every f**king week) or worrying about not getting a spelling right, especially as he does actually get them right! I really hope we don't end up on a reduced timetable, as DS1 gets so anxious about not doing everything right and I think he would spiral downwards if he knew he was missing lots of school and not doing what everyone else was doing.

Yesterday he was 2 minutes late for his swimming lesson and had a meltdown and refused to go in as the class had started without him and he was convinced the teacher would be cross. He worked himself up into a total state, crying and screaming and just couldn't be talked down. I found this both desperately sad and immensely infuriating. DH says he also gets anxious about being late, and always has done, so he understands a bit of what DS1 is going through. Some days I find it all too exhausting for words and am horrid shouty mum, which obviously helps no-one and we both end up in tears.

I do think there may be more sensory issues than I had appreciated though. The lovely SALT he saw last month has referred him for an OT assessment, which I really hope comes through before the summer holidays although I guess they could see him at home over the break and then again in school; not sure if they would though. Any thoughts?

[Marshmallow09er]

That all sounds so familiar

I would absolutely not agree to any part time schedule if it's mentioned - it's not lawful anyway and sounds like it would affect your DS adversely (it helps my DS decompress but now trying to increase his hours is extremely hard as he's very volatile at school which I knew would happen)

I would say the OT needs to see your DS at school really. There will be things you can do at home of course but seeing him in the setting he needs most support in is very important as the OT can advise on what kind of sensory breaks / activities they can be doing there. It was the key to understanding DS for us. He gets overstimulated very easily which results in him pulling other kids down / lashing out / losing all rational thought really. The key is stopping him getting to that point to start with.

Anxiety is so hard. I know when DS is calm and not anxious he's a delight and a happy boy. This rarely happens at school as the whole thing makes him overwhelmingly anxious. Your example of the toy would break him too. DS still struggles hugely with the concept of 'losing' - not being chosen for something like that would feel like losing I think. Social stories help. But they have to be done regularly. School used to do them once and think 'right, job done, he gets losing now'!
For that they should probably do one just before the toy is awarded every week - tailored to it's about luck and sometimes you are chosen and sometimes not, and if you are not chosen this how you can react etc (that's not a good example but def think if done properly it would help)

I'm finding tho a true understanding of how to manage a child with HFA and for us very strong demand avoidance, in a mainstream setting is very hard.

[FrayedHem]

We've come out the other side of a constant cycle of negative feedback. The break through was getting the Head involved. We are fortunate that she has a lot of SEN experience, so was able to understand that DS1 was struggling massively with anxiety which is something the class teacher didn't agree with. We also had input from the ASD Specialist Teacher and she was able to highlight things they were missing (sensory overload, the teacher's language confusing him, the interactions with the LSAs etc) and what they could do to better support DS1 in class. Fresh eyes in the classroom can be quite revealing and helpful if they actually put the support in place that is needed

As marshmallow09er has said, it's worth finding out more about the reward chart. Are they actively supporting him in being able to reach the rewards, or is it just expected? And if you think it's counter-productive when he doesn't reach the target, do share your concerns with them. DS1 really disengaged from education as he's only ever really had 1 teacher and 1 LSA who understood him properly (he's now yr6). Although he's back to producing work again and much happier at school and at home, I let things drift for too long tbh.