To post here aswell as the SN board doesn’t appear to come up on active?

[DietCokeChipsAndMayo]

Not really an AIBU but there seems to be very little activity on the SN board and it didn’t seem to come up on active when I was posting and I am a mess over here and could do with some advice tbh

I’m just going to copy and paste from my other thread with only 1 reply (I don’t know if this is against the rules) -

What to do when you seem to be your child’s trigger?

Trigger is possibly not the best word but I couldn’t think of anything else

DS3 is 5 and is undiagnosed as of yet, we are in the middle of a very frustrating process but atm has suspected ADHD although I’m sure there’s something more than that too
Anyway, during the evidence gathering process from school and other caregivers it’s becoming very clear that he is at his worst when he is with me
Lots of behaviours that make my life miserable on a daily basis nobody else even recognises, I can literally walk out of the door and it’s like a flip is switched and he’s a different child

Has anybody else had any experience with this?
I’m starting to think he’d be better off not living with me

I do get that, and I understand him holding it together at school then coming home and lashing out at me, that bit I get
But it’s more than that and it honestly feels like he’s just unhappy when I’m around
For example I can’t take him to birthday parties or gatherings really of any kind because he will just sit on my knee chewing his hands or repeating himself and I guess stimming? But if I’m not there and he’s with his dad or grandparents he runs of playing and getting involved having a good time, or at night times if he knows I’m in the house he just screams and screams and screams for me all night long, whereas if he knows I’m not in the house or if he’s at my parents house he sleeps peacefully almost through the night. I can’t take him to any of his extra curricular activities because it’s the same, just won’t get involved if I’m there
It’s like I make him miserable

Actually, you're his constant and security which is why he feels safe to act out with you.

Not sure Im qualified to comment but Ill give it a go.

I dont think you make him miserable at all, I think you are his safe person.

Is it you being around or seperating from you (ir returning to you after a separation) that's an issue? So, say on a Sat morning or Sunday morning, with no pressures to go anywhere or do anything, do you still "trigger" him (Im not sure that's the right word either)?

He's doing it because he doesn't feel the need to mask when he's with you. He can express himself more authentically. When he's with other people, he has to adopt a different persona and pretend to be someone else. This process is extremely tiring and builds up a lot of stress within the mind and body. My adhd/pda child was exactly the same. It's perfectly normal and nothing to be concerned about. You're the closest person to him and he knows this and feels comfortable around you in spite of how he's coming across. He does sound stressed though so you will need to address this by pushing for help. My ds ended up with a severe anxiety disorder because they kept fobbing me off about his behaviour. He's an adult and medicated now which has helped him enormously.

As the others have said youre his safe person xx

How many extra curriculars and parties is he going to? Parties in particular can be hugely overwhelming. Think of all the sensory stuff going on with noise, lots of poeple, also the change in routine and different expectations. One idea is to have a plan of a safe-space (ie the car or outside) if it gets too much and agree you can go there but this may work better when they are older and more aware of own triggers.

Extracurricular - what is it? Is there too much going on and maybe needs paring back if only 5 and struggling.

Have you put in place clear routines at home? Maybe a visual board for order of thongs to do in the morning / one with things on the week on?

Sorrry if all this is obvious. I am a teacher and didn't have a clue when my own child was diagnosed later on so its all been picked up since.

Longer term the relationship between you and your child will be key and although its hard work working togther to identify triggers and put routines in place will hopefull help to a degree.

School is a whole other battlè....

So do you think he doesn’t actually enjoy the ‘fun’ things that he will engage in with others and not me, but he pretends for others and doesn’t do that for me?
It’s the fun things that bother me the most, I can take the tantrums and things when I know he’s held it together through something else but I don’t understand why he’d rather sit on my knee repeating a sentence 1000 times rather than play with his friends at a birthday party?! But as soon as his dad shows up he’s off and appears to enjoy it?!

@Porcupineintherough yes it’s all the time, in smaller ways but things like I’ll tell him to stop doing something and he won’t or he’ll start screaming but if another person in the house tells him to stop he just says ok and carries on with his day
Everything with me evokes a HUGE reaction whereas with everyone else it’s minor - if that makes sense

@bubbletrumps we’ve been rejected from CAHMS twice so far, I’ve managed to convince my GP to prescribe melatonin on a temporary basis and I’m currently attempting CAHMS again via his school, but right now I’m at a loss and nobody with the power to appears to want to help us

Thank you all so much for the responses

@PinkCricket he has 2 activities a week, he has a LOT of energy and much of it destructive at home so I thought they would help, he loves them and gets excited for them and fully gets involved and enjoys them … if I’m not there
The parties thing isn’t a huge issue I suppose it’s just happened recently so is on my mind, but it’s also if we go to my mums for Sunday dinner type situations too
She says all the time she’d rather have just the kids and not have me come to because he’s so much better behaved when I’m not around
We have the routine on a whiteboard on the fridge, I’ve typed up rules and have them on the wall and we have a traffic light system for behaviour- it all gets completely ignored, he doesn’t respond whatsoever 🤷🏻‍♀️

I think what we see as fun can be very different to what an overwhelmed child sees as fun. And I know I have to be careful now of planning things and being upset if my daughter doesn't want to go as I put the work in.... but realising its too much for her.

As adults we can escape from situations we are uncomfortable in or don't like. We have the words to verbalise this and usually the ability to just leave! A young child really doesn't. They just try to cope.

Everyone's sensory needs and triggers will be different so will be different for me/my duaghter than your son and part of the mext fee years will be finding out what works and what doesnt. I find discos unbelievably overwhelming. I don't like lights/loud music/crowds. I'm an intelligent professional but those things completely overwhelm me. I now realise this is unusual!

I'm also terrified of snakes. If you took me to a snake holding party, told me I should enjoy enjoy it becase its fun/it cost money/everyone else loves it it wouldn't stop me being scared. Its a fight or flight thing and for some kids with differences that can be activitated by things we think should be fine but really arent for them.

Once your child is more settled and feels calm they will show you the things they like? What did they like when younger/at home/in the garden? One thing is to join them in their interests and the things that bring them joy (for one of mine that has been swinging and spinning. This translated to a love of rollercoasters as they got older...)

Sorry cross posted.

I don't think lists of rules and traffic lights work for many kids imo as they often aren't in control of their behaviour by the time it gets out of control!

Activities can be great if it's stuff they're into - and I think exercise can be such a huge boost.

Have you read "the explosive child" by Ross Greene? I use some of his extracts/other bits in my work but havent got round to reading it yet... He is brilliant though.

Please don't feel its you. You will be the most important person in their life. And it is so so so so hard...

DietCoke you say his dad. Are you on your own with him?

Is your mum less of a support than you'd like.

There really is a gap in provision and support I think for parents. I so don't want you to think its you though. There are so many SN mums here who can support you and who have been there. Xx

It is a really complicated relationship between wanting to do something, finding it socially/emotionally difficult. chosing to do it, and then feeling overwhelmed by doing it.

an example:
dd really really wanted to go to birthday parties eg at soft play on saturday afternoon. Really excited to be asked and choose a present etc.
Sat am - let's wrap present - dd bad tempered, won't engage, kicking off about other things (eg breakfats)
Sat pm let's put on clothes for party, full scale melt down about how she isn't going and never wanted to go etc.
I suggest we just drop off present and leave. She eventually agrees.
We arrive, drop present, she sees everyone else there, and decides to stay. Stays, has a great time. I collect, happy girl, then in car on way home has a massive melt down.

That was 10 years ago. We learnt lots of strategies to help, and as she reached 7/8/9 I could talk to her about them, but that terrible tension between wanting too, but it is too hard and too scary, and being too overwhelmed, but still WANTING to.

I was her safe place, so it all came out with me. If I was away, she woudl get dressed and go to party with dad. No trouble, until sunday, when massive aftermath meltdown would happen over something completely different.

You are doing a great job. You ARE a good mum. Hold on in there and keep fighting for an assessment

Thats such a good description steppemum. And completely agree as they get older you can work it out together

Oh and absolutely sometimes they've held it all in together and seem fine with others. Then explode because "we dont have flour/ I wanted waffles and we don't have flour to make them/why dont we have flour......" which was ours yesterday 🙄. Full on all morning kicking off over flour. There is no way the root of it was flour...

@steppemum I wish Id read that post 10 years ago

My DD was like this. It's not that you're his trigger, it's that you're his safe space and he doesn't have to pretend when he's with you. My DD is autistic and didn't get diagnosed until her teens because others never saw the real person that I saw. I don't know what the answer is, I never found a solution myself. She's an adult now and genuinely appreciates the fact that I was her rock her growing up. So all I can say is keep on doing what you're doing because however awful it feels, you're doing a fantastic job.

Things to help.
deliberately plan down time/chill time before the event.
eg if going to Grannies for Sunday lunch, plan a quiet morning before hand. Maybe even plan a quiet Saturday.

Watch and learn his triggers - what is causing friction at Grannies? Is it having to sit at the table? Is it noise? Is it social (cousins, busy house etc?) He won't be able to pin point it, but you can.
Try making it shorter, arrive closer to lunch and leave earlier. Try suggesting he gets down from table and goes and does something else when he has eaten and while others are still at table. Try noise cancelling head phones.

Accept that for him, these situations are hard, and learn how to make them easier.

My friend has a son with ASD, she often came round to parties, family gathering etc for just an hour. Her motto was to leave while he was still happy. Sometimes her dh would take him home and she would stay. They adjustedtheir life to fit his ability to cope, as he grew his ability to cope grew too.

🥰 Steppe

My experience comes from a different place so while I share what worked for us that doesn’t mean the same will work for you.

My daughter was triggered by me after I had to put her through medical trauma.
While I wasn’t responsible for what happened I was the constant face through thw weeks of hospital and drs

When we came home from the hospital she avoided me at home and I tried to make myself available to her without forcing

However every three hours she NEEDED medical help to manage her bladder.

This issue having to be forced enforced her trauma response to me
Especially since I couldn’t get her to engage with me outside if these times and being a lone parent I couldn’t tag team out of the situations they just escalated as her trauma was triggered each time.

This escalated until my 6yo started threatening to kill themselves.
I got cahms involved and of course that took forever and still escalated.

We stopped going any where or doing anything because I could barely manage her at home never mind out and about

When she finally started art therapy I told her in front of the therapist that she could tell them anything she needed to talk about, including about me and that she didn’t need to worry about getting me into trouble she could talk about anything she needed to even being angry with me.

Having an outlet for her feelings toward me was revolutionary, discussing her experiences and playing what if, reframing her experiences as of she was a frightened stuffed animal who couldn’t talk and putting her in my position gave her an insight she had never had before. She has since come to and told me that she appreciates how brave I was helping her when she didn’t understand, which made me bawl in the Morrison’s car park!

So yes we can be our children’s triggers and we aren’t always able to undo that alone

I am only going on what you’ve said in your messages about him being different with other but I do wonder are you anxious?
Is your anxiety triggering his anxiety?

Whatever the cause you need be recording everything and harassing cahms until they take you seriously, you don’t have to live like this forever

Can I ask, what happens at home?

When you and your DS’ dad are there? You say ds is destructive and challenging for you but does he behave the same when his dad is present? Do others see this behaviour?

Have you been apart for a sustained period of time (48/72 hours)? How is/would you think his behaviour would be over a prolonged period of time with others?

Oh my goodness BeMoreQueer that sounds so tough.
I am glad you got some proper therapy in the end

Oh BeMoreQueer that sounds so hard :( So glad therapy helped.

Thanks ❤️ Steppemum

We were very lucky to get support from the teapot trust to fund therapy sessions and to find a therapist who knew how to reframe medical trauma by making it all about dogs 😂😂😂

Sadly we lost many friends in the process who saw my struggling kid as badly behaved so my heart goes out to the op so much. It’s so hard feeling like everyone is looking at you and blaming you when you’re just trying to crisis manage as best yourself can

@DietCokeChipsAndMayo I totally get what you are going through. My DS cries when I drop him to school, clings to me, can't be separated but strolled in happy as anything when a friends mum took him because I had a work emergency on Friday . I feel bad about it, I'm not anxious myself so I'm not sure I'm causing it.

It sounds like he'd rather be with you than anyone else - but if you're not around then he will do other things (I wouldn't say he doesn't necessarily enjoy them as others suggest though). Because of this strong bond it might be much more upsetting to him if you say no or tell him off or anything else slightly negative.

I agree with a pp too that if you are very anxious about the situation he might be strongly picking up on this - if other relatives are more laid back that might be why he is so different with them. He might find parties very tiring and overwhelming but it doesn't sound like he feels obliged to mask hugely (he doesn't mask when you are there for example) masking is normally an attempt to fit in and be like others and he just might not feel the need to do that. He will learn huge amounts from being put in these situations and will hopefully learn a lot of strategies to cope which will help him as he gets older and of course there are things you can put in places like noise cancelling head phones etc.

I would let him do things without you if you know you are going to be at all anxious about them. Please don't take it personally though!! Then when you see he is able to cope in these situations hopefully it will increase your confidence. Then give him lots of quiet down time after. x

Thankyou all for responding, I’m feeling so overwhelmed today but I am reading all of your messages
To answer a few points - me and his dad are semi together atm, we’re doing a bit of a trial separation but the kids think he is just working away some days of the week, this is very recent though so DS’s behaviour has nothing to do with this, me struggling to cope with DS alone has caused us to consider DP(?) moving out and DS living with him then me and his siblings just seeing him at weekends or whatever, as he just seems so much happier when he’s with his Dad without me
So I’m kind of on my own, although we do have 3 other children so I do have them to consider

@BeMoreQueer that sounds so so so hard, just to answer your question I do have depression and anxiety although it’s controlled with meds atm, and tbh I think it all came from DS anyway, he was the most difficult baby I’ve ever known and didn’t sleep for the first 2 years of his life and so this is when I was put on meds

@PinkyU if it’s me and his Dad present he’s difficult, but nowhere near on the scale that he is when I’m alone, but also DP says when I’m not there he’s much much calmer and easier, so he sort of meets us in the middle when we’re both there
He doesn’t really listen to anyone else if I’m around though
He has been away from me a few times for a bit longer, my parents took all the kids to a caravan for 4 nights and brought them back saying never again, she nearly lost him more than once as he doesn’t listen and just runs away, and when I had DC4 and was in hospital for a few nights he was at home with DP and was a dream
I have actually witnessed it too, the other night I went out before he went to bed and came back while he was asleep, so he didn’t know I was at home, at his first wake up he will usually scream and scream until I get into bed with him, this night he very calmly called for his dad, said ‘is mummy home?’ DP said no not yet, he said ok and got back in his own bed, at the next wake up I was in bed and once he knew the screaming began 🤷🏻‍♀️

How aware is he?
If you asked him about that screaming, would be be able to talk about it?
I am thinking something like - when I am home and you wake up, you scream for me. But when you woke up and daddy was here you didn't scream. can you tell me why?
If he is able to unpick it even a little bit, that might help you.

I know mine did this this the other way - demanded me not daddy at night, until we sat them down and said mummy and daddy are going to take turns, and reminded them before bed and then when they woke, and dh went he said - tonight is my turn, no mummy. We were surprised how quickly they accepted that. But that was with no SEN.

I’m not sure tbh, ‘why’ questions seem to receive a bit of a blank stare, or going off times I’ve tried to reason with him before I expect his response would be ‘because I love you’ which is a blanket answer to a lot of my questions