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Parenting

For free parenting resources please check out the Early Years Alliance's Family Corner.

Trauma or Autism or Neither. Thread 2.

204 replies

StrugglesSadness · 03/05/2024 21:35

@imip
@Scirocco
@Choconuttolata

Thank you with all of my heart to everybody who contributed to the first thread. You are all wonderful & have helped me through some very dark times.

Recap (Just) 11 year old son struggles with transitions & changes to routines. Extreme violence shown mainly towards myself but also his sister (7) (if he is able to get to her) & himself. Also runs from the home & has to be bought back by the police. Also absolutely trashes the home on a regular basis.

Social worker (who I asked for back in August) is extremely reluctant to put the paperwork through for an Autism assessment, despite school saying that my son 'masks' there & my son's counsellor saying that the assessment is needed, or to help us very much with anything at all really.

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StrugglesSadness · 25/09/2024 09:22

Following on from Fridays conversation, I was trying to get my daughter on the 'Siblings of a child with ND' workshop, but they've just said that since my son is no longer on the assessment list then she's not able to attend.

I really, really wanted her to do that one... 'Why do they behave the way they do'... I just thought that it would be so good for her.

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Scirocco · 25/09/2024 11:34

StrugglesSadness · 24/09/2024 18:44

Thank you Choconuttola, I'll have a look.

Sometimes on here people say that the private diagnosis aren't accepted by the NHS though don't they, how do you know if one would be? (Do you know?)

I'm in 2 minds weather to try again or not, tbh.

Whether a private diagnosis is accepted/recognised by NHS services in various specialties can be dependent upon who made the diagnosis and how rigorous the assessment process was. You can ask private assessment centres: who does the assessments (do they do similar NHS work, are they a consultant or equivalent level in the field, etc), what is the assessment process (is it the same breadth and depth as the NHS gold standard, do they use the same assessment tools), are their assessments recognised by NHS, schools and social work for care and support planning?

Choconuttolata · 25/09/2024 12:00

https://www.acorn-autism.co.uk/faqs

The link I gave you addresses this in the FAQS it is worth a read, they do follow gold standard assessments and NICE guidelines and liaise with teaching staff.

Frequently Asked Questions about Autism | Acorn Autism

Frequently asked questions about autism in children, young people and adults. How to navigate the journey and what to expect at autism diagnostic assessment.

https://www.acorn-autism.co.uk/faqs

Interested in this thread?

Then you might like threads about these subjects:

StrugglesSadness · 25/09/2024 12:31

Thank you for that Choconuttola & Scirocco. Yes I've read it now, That makes a bit more sense.

My son was fine last night but we were just messing around & he nearly 'turned', it was just this look in his eyes/on his face. Made me stop in my tracks kind of thing. It's worried me that I (still) didn't see that coming.

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StrugglesSadness · 26/09/2024 13:34

CAMHS phoned me today. Prompted by the GP apparently. We have an appointment in November so at least that's one thing that's moving forwards.

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Choconuttolata · 26/09/2024 13:41

That is at least a step forwards yes, before you appointment think about what you want to cover the ASD assessment information will be helpful. They should also talk to you without your son so that you can express your own feelings and opinions without him present.

StrugglesSadness · 26/09/2024 13:46

Thank you Choconuttola, yes she said that I'm going to be sent some questionnaires to fill in before the appointment.

I feel so on edge talking to people like that now, as I feel like they are just waiting for a chance to say that actually they've changed their minds & they aren't going ahead.

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StrugglesSadness · 03/10/2024 14:28

I spoke to my daughter's play therapist (at school) She's doing some work on trying to get my daughter to recognise that when I'm asking her to go to her room, it's because I'm needing her to go there, to keep her safe, & that it's not the time to start wandering around choosing toys etc.

She asked if the SW has made the safety plan for my daughter, that she mentioned in the CIN meeting... Obviously that's a 'No' because it would involve the SW actually doing something.

I have the letter from CAMHS, it says to hide all things like phone chargers (I hadn't thought of this) & the wool that he uses for crafts.

It's difficult for me because, like now, my son is holding it all in, so to tell him 'I have to charge your phone away from you because you can't have the charger wire' or 'You aren't allowed to use wool & do your crafts' just feels so wrong.

Where we need to get to, is that my son can stop holding everything in until he explodes, & deal with things in a healthier way, before that point. I know that.

He has started begging & pleading not to go to school every day, but so far it's not leading to meltdowns, but he is making comments like 'You don't love me or your wouldn't force me to go'.

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Choconuttolata · 03/10/2024 18:05

That sounds positive about the play therapist @StrugglesSadness for your daughter, she sounds like she is supportive of you both.

The CAMHS advice is standard advice for children and young people that self harm and are at risk of ligaturing. You get an extra short usb cable to reduce the risk, but then he can still charge his phone, Amazon sell them. I would be cautious about removing crafts if these are a positive outlet for him, but if he is becoming more heightened more regularly then you may have to consider temporarily having crafts that do not include wool or sharps like scissors and obviously not in his room. A box that he can get out and use under supervision, but that can be locked away if he is having more frequent episodes where he isn't as calm. It is a hard one.

Is there a way that you can record him on your phone in your pocket when he is pleading with you about not going to school as evidence of his distress to show CAMHS?

StrugglesSadness · 03/10/2024 18:26

Thank you Choconuttola yes I was thinking that, & I said at the CIN meeting that he uses wool for things like his crochet which is good for his MH. I will get an extra short charger wire.

The problem that we have is he will be in a lovely mood, I'll be busy doing something & he will ask if he can use the wool for something in his room, so I say yes to this, he comes & shows me that he's put it back, & what he made with it, & then the next day he will have a meltdown & show me that he hid a length of wool in his room (this scenario actually happened)

But I know that's on me, I need to be more 'on it' with checking his room etc.

I am trying to record him saying about school, yes. I've been up & down there like a yo-yo (it feels like) already. He became so distressed the other day when he forgot something & begged me (over the phone) to take it in. But this was before school started, outside, so they didn't 'See' it.

He said that somebody went to talk to him about how things are, he doesn't know who she was, but he said that he 'Just said yes to everything that she asked me' & he was in hysterics when he told me this.

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StrugglesSadness · 07/10/2024 13:39

I'm still struggling on with this parenting course (I chose to do this one because it's specifically for SEN children, the SW didn't ask me to do it) but it's all 'If they are loud in the cinema/shop/wherever they shouldn't be loud, then remove them. They will then stop. It works & they won't do it again'.

This just doesn't work with my son. Or my daughter tbh. I've done the whole removing them from places LOADS of times, & it doesn't change the behaviour for the next time. Nor do they stop in the moment.

And then the woman running the course tells this story which ends with 'And because this mum never bothered to discipline her child, the child is now HITTING her' (dramatic pause for effect) 'So this is what will happen if you have no consequences'.

It just makes me feel like the worst parent in the world, I'm obviously getting things so wrong. And deserve to be hit because I'm failing my son.

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imip · 07/10/2024 14:04

I would struggle with that also - that’s just bullshit! It’s likely a child is reacting to a sensory environment in those instances. My response would be, we all know behavior is communication, so what do we do about addressing understanding the communication and addressing the environment.

That is come ableist course you are doing! Unfortunately, I think you are going to have to stick with it, but perhaps gently challenge I.e., if my child is loud at the shop, it is because they are overwhelmed. Their sensory profile is part of their disability. I cannot train my child like a dog, I need to change the environment around them. For instance, I can shop at 9am or whenever the shops are open first thing, I can go to the cinema during their SEN sessions.

This smacks of ABA.

StrugglesSadness · 07/10/2024 14:14

Thank you imip This is the toughest week by far. I feel really crappy about myself & I'm overthinking everything now!

They do keep saying 'Behaviour is communication' but then they say all that other crap.

I feel like all the other parents are judging me because I was the only one (in the beginning & during) who has mentioned violence like the kind I experience.

Gah it's just awful today.

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imip · 07/10/2024 14:23

Then they obviously don’t understand what “all behavior is communication” means. If you are a SEN kids, you are being loud and disruptive at a supermarket - a parent would want to know the causes rather than just thinking they are ‘naughty’.

BertieBotts · 07/10/2024 14:34

Sorry I haven't read all the background. This is so frustrating though - when they say "behaviour is communication" but clearly have no idea what that phrase actually means, if they think that using behaviourist strategies like removing the child from the environment will help them "learn" anything 🙄 So so so frustrating.

Not to suggest yet another resource or "strategy" - but I have been getting a lot out of Robyn Gobbel's model recently, she has a good model of Polyvagal theory which she gives three different names - Owl brain for regulated, then Watchdog and Possum brain for the more self-protection type pathways. Watchdog is when it becomes aggressive/equalising type behaviour, whereas Possum is dissociation and shutdown sort of behaviour. The main reason I'm mentioning it is your thread title - I am using it to help me follow where my suspected AuDHD son is in the process of dysregulation, and it is helping, but her actual history is in trauma and that is where most of her experience lies. I do think that the reaction can pretty much be the same, even though the cause is different. (My son doesn't have trauma, unless you count birth trauma.)

I find her book easier to read/follow than her podcast because she has a very over-enunciating way to speak which I find irritating, plus the book gets to the point much faster if you skip the "therapist" bits, but the podcast has more topics like how to talk to siblings, which can be useful additions to the info in the book.

I don't think you are getting things wrong, I think you are getting conflicting (and, TBH, often wrong) information from the health and education professionals who are supposed to be supporting you. It is shit that the knowledge is not consistent across all of the boards. In practice, that is frustrating because it means you have people giving advice which is resting on totally different assumptions (assumptions about: What is driving the behaviour, what will be effective to change it, what the results will be of X or Y intervention.) And it doesn't always work to question somebody on this or wonder what their underlying assumptions are because then you look like you are just being difficult or obstructive when really it would be hugely helpful if everyone was actually on the same page.

StrugglesSadness · 07/10/2024 14:34

imip It just makes me feel like failure.

I've taken my kids out of supermarkets before & waited for them to calm down. And waited. And waited. And waited. 3 hours later I'm still waiting. It obviously works for some but not for mine.

(This was before I was thinking about SEN. I'd do it differently now)

But it still makes me feel awful to hear that this is a magical answer for everybody else's child. Apart from mine.

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StrugglesSadness · 07/10/2024 14:40

Thank you BertieBotts for that kind post. I'll have a look, I've not heard of that before but it sounds good.

I lack confidence, I know that I do. So I'm thinking in my head 'Well removing them from the shop won't instantly calm the behaviour' & I'll write about it on here, but then my brain goes 'Yes well it obviously should do so you are obviously doing something wrong'.

They picked up on the fact that I wasn't joining in much last week, so I made sure that I did this week but it's so difficult when every thing that they are telling me to do, doesn't work for my kids. I don't want to sound hugely negative when all the other parents seem to think that it's great.

Bloody sticker charts too.

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imip · 07/10/2024 14:42

Apart from mine also!

Do the trainers have lived experience? It would be a question I ask.

i spoke to a parent who told me that they were concerned for their young persons mental health but inferred that they were a good enough parent to stop their child self harming or committing suicide. Which of course makes me feel like shit as my child is the self harmer and has had drastic suicide attempts. I think I am a pretty seasoned SEN parent with lots of professional and personal experience. But I have to admit that really hit me.

StrugglesSadness · 07/10/2024 14:46

Well that's 2 of us!

Thank you imip & I'm so sorry. It's crappy isn't it. What a thoughtless thing for somebody to say (different if they realised what they said & quickly apologized) I hope you know that you are amazing. You do everything that you do & you've helped me on here for however long.

I have a one on one session with them (the trainer's) coming up so that's going to be 'fun'.

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BertieBotts · 07/10/2024 15:00

Waiting for them to calm down does not work for my DS either. In fact if you just wait, 9/10 he will get more and more and more wound up. Usually to the point that an adult gets wound up in response. He is only 6 so it's not the same, if necessary we can restrain him so nobody is in danger but it's not a nice thing to do all the same, and we have had to look into how else to calm him down when he starts escalating. (I have a 16yo who had similar behaviours too so that's why I feel a bit more confident this time around - we have been here before.)

I think that again, this is a good example of why the underlying assumption is important.

When a child is kicking off in a supermarket because of a fairly minor thing, like they have learnt from previous behaviour this will get an adult to buy them a toy, then taking them outside and waiting for them to run out of steam is a perfectly reasonable approach and will probably work to begin to change that expectation of the child. I expect that the course leader is also suggesting positive reinforcement for the wanted behaviour in the supermarket too, such as praise for holding hands/sitting quietly in the trolley, or offering them a job to do such as holding a shopping list. All of this is based on the assumption that for the child, grocery shopping and supermarkets is something that they can easily handle and the main issue is that they are bored and impulsive, they do not automatically pick up the social expectations of supermarkets like a NT child would, or because of previous difficult behaviour they have become used to the idea of parents distracting them with a bribe.

For those children the suggestions will probably work and that is the majority of the children whose parents are on the course.

However, if your child is kicking off in a supermarket because the entire environment/experience is overwhelming for them and/or it's too much of an expectation to handle right now, his brain has gone right into protection mode and he is reacting as though there is a threat to his life, because his limbic system is interpreting all this stuff as though there genuinely is a threat to his life.

Taking him outside isn't going to remove his sense of felt threat, because the threat is not tangible. There is nothing physically in the supermarket which is causing this directly. It is (most likely) an overload, a combination - if you have ever played the game Buckaroo, think like that, how each item individually will not trigger the donkey to buck, but once the total weight reaches a certain point, it will all come flying off - those "individual items" could be sensory input, it could be all of the people, it could be having to make multiple decisions about what to buy, it could be the writing on the packaging of all the food and the special offer signs and all of this information which is being bombarded at us in order to make us want to spend money. It could be things that happened earlier in the day or week. Stuart Shanker is good at explaining/breaking this stuff down BTW. He is much more enjoyable to listen to as well but I do find it takes a lot of listening to various things he has done to get the whole picture.

The way that you will help him to calm down in that situation is to find out what, for him, constitutes felt safety. What will provide the opposite signals to his body to calm the alarm and help him realise that he is not under threat. And for you to (somehow, because it's bloody hard!!) calm your own limbic system and keep yourself in "owl brain" territory where you know there is no threat and you are the safety.

The absolute LAST thing that will do this is for you to take him out and berate him and tell him to calm down and now he's lost his sticker or whatever nonsense reward he has been promised. A reward won't provide felt safety. It works for the other children because the other children do not need this extra reassurance. They already feel safe in a supermarket. Your son does not, that's why he is reacting differently. It is not because you're getting it wrong.

BertieBotts · 07/10/2024 15:21

Interestingly I have now read so much that I know what the "right" answer in behaviourism terms is for this kind of response too - it will be to break down the supermarket into much smaller steps so for example to just walk into the supermarket and walk straight out again, for a sticker.

Then you increase this to something like walking to the fruit and vegetable section and looking at some of the items then walking out without buying anything.

Add different tasks to this until building up to an entire shop.

It would be interesting to note whether your course trainers actually have even this level of knowledge about the system they are offering and suggest some form of breaking down the supermarket trip (which probably wouldn't work for my DS because sometimes the supermarket is absolutely fine, and then at another time it will be a no go.) or whether they just have a rulebook which works for some children and not all of them.

However, I do think that again, the assumptions of this are entirely wrong. Because the assumption is that even children with quite severe SEN are just being difficult and just have to "get used to" things and work up to them and then it will be possible for them.

Heidi Mavir has an anecdote in her book about her son being expected just to touch the school gate. She then points out that if you asked her to put her hand into boiling lava, it would not become any less dangerous for her to do this if she worked up from looking at a picture of the lava, to looking at it through a window, to standing near it to finally touching it. It would still burn and harm her. And this is the perspective which I think is completely absent from ABA. They only look at four possible "functions" of behaviour, one of which they classify as "avoidance" (e.g. child wants to avoid boring supermarket trip) - but there is absolutely no attempt ever to look at WHY someone is trying to avoid the activity or whether it could be adapted in a beneficial way to the person. The attitude is just - well they have to go to the supermarket. End of. No flexibility.

That might work for some children and clearly it does work for lots because there is a lot of research etc backing this all up. But I do wonder at what cost, because there have to be some who are "avoiding" the activity because is is causing them distress or harm!

femfemlicious · 07/10/2024 15:29

This is too much to be expected to cope with. I advise that you put him in care!. For your sake and your daughter’s sake!.

StrugglesSadness · 07/10/2024 18:06

Thank you femfemlicious We are doing ok for the time being.

Thank you for the support, BertieBotts. That's all really interesting. My son is 'generally' ok in a supermarket by the way, although he's had his moments) he likes to take a list on his clipboard/toy shopping basket/teddy/likes to know exactly what we are looking for & when we will be done, but as long as all of that is sorted then he's all good.

The breaking things into smaller steps thing is how we do something worrying & or new, for my son. Like when he has to go to the hospital for an appointment. It's the only way he can manage going to 'new' places really.

It's funny that you used the words calm down, they showed us this video today where the parents were saying to their kids 'Now you sit down & calm down. I'm waiting for you to calm down. You can come & play when you calm down'. And I kept thinking... 'Wow. If I kept telling my son to just 'Calm down' then that would be absolutely guaranteed to make things worse!

Thank you for the support everybody. I feel a bit better about things now.

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BertieBotts · 07/10/2024 20:04

Yes breaking things down can definitely help - I think it's just when it's used inappropriately it can be an issue.

The supermarket example was just an example - apply to whatever situation it is that your DS finds hard to cope with. Hope things do settle a bit for you all.

StrugglesSadness · 07/10/2024 21:01

I know it was an example & I appreciate it. Thank you for your support today BertieBotts. I'm absolutely dreading next week's session but I just need to get through it don't I. Add it to the list of things that I've done to try & make things better for us all.

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