Update to 'I don't want my five year old'

[icann]

I thought I'd start a new thread because the other one had 800 plus responses and I think the limit is 1000

Anyway we started a private assessment with a strong suspicion of autism and possibly PDA. And maybe even ADHD. We've had the first assessment. We were going to be waiting too long on the NHS and our in laws helped us out with the costs. We've checked its a recognised society and it will be accepted by school.

We had a massive issue which is why it's taken too long for a reply. She broke her arm. She refused to go to school and we have been pretty much dragging her to school. I need the break..unfortunately she threw a cup at my 3 year old and she required stitches to her face.
I reacted way too slowly to stop it. I should have seen it. My 3 year old was bleeding a lot, apparently face injuries bleed like crazy. I had grab my 5 year.old and I am not ashamed to say I physically locked her in the living room so I could phone my husband to get home now. She trashed the entire living room. Her arm needed re casting as she broke it. My 3 year old needed stitches.

We've reached breaking point now and this second assessment can't come any quicker

Yes @Tittat50 however it is genuinely inclusive and the Head and all the teachers do their best.

However, I had to go to the lengths of getting a job there to check it really was good...obviously not everyone can do that!

Mind you her primary were brilliant too even though she absolutely wasn't their typical child.

It is much more straightforward of course if one's child reserves the explosive behaviour for home.

You probably already know this or it will have already been said. Your daughter is probably heavily masking at school, and behaviours will always be ten fold at home if she has been masking all day. I do sympathise with you

'Happy hands with Hallie' and 'ASDwitha g and_ t' on Instagram might be useful to you. The latter has a Facebook page as well I think.
Best of luck, this sounds horrendous, give yourself boundless compassion because no-one would expect this.
When did her challenging behaviour start?

I’m familiar with this woman and to be honest, the things she recommended horrified me.

She recommended that mothers (always mothers) sacrifice every inch of themselves for their PDA child’s comfort.

She described a scenario she herself experienced, in which her child wants to control everything she does, right down to where she places her gaze. To counteract the sheer horror of this, she suggests a number of calming techniques to stop mothers from going insane, such as chanting mantras and doing visualisations in one’s head. But, crucially, not to refuse the child’s relentless demands.

I understood this to mean that this is what SHE does, and to justify the absolutely ruinous effect this has on her life and her mental health, she encourages other women to do the same. I had to unfollow because I felt so deeply uncomfortable with the advice she gives families.

I have two autistic kids, both with demand avoidant traits, so I do have years of experience of this kind of thing. But there’s no way I could follow that kind of advice without driving myself to a breakdown.

@icann does your daughter have an EHCP? If not you need to get school to start this process ASAP, you will not get a specialist school place without one. If school are struggling with her in the meantime, they may want to look at alternate provision?

Applying for DLA is great and you'll have new evidence from the autism assessment too. You can also get a supporting statement from school. It takes a while to go through, but you will get a lump sum back payment which can be helpful if there's a significant purchase to be made e.g. a Safespace or similar.

Do you have any statutory support? Are you on the radar of social services, specifically the children's disability team? I'm just wondering if you may be able to get some sort of respite care, either through your local authority (bit of a postcode lottery realistically) or paid for when DLA is sorted.

Neither of us know if DLA and carers allowance etc would make up for OP’s wage and more importantly she says she needs that break while she’s at school. You have to put your own life belt on first!

OP had explained she cannot do that.

@Jellycats4life I hear this. I read so much and have exhausted myself to the ends trying to accommodate and handle things 'correctly' in the context of PDA, but it's actually potentially quite dangerous in my view. Some kids are incredibly smart and will unfortunately be manipulative at times because they may feel it's their only tool. I know if I were to adopt certain gentle approaches continually I'd be completely dominated.

I know it's wrong, but sometimes the human in me just says ' stop for the love of God, get away from me for a moment please, you are too much'. I've shouted, I've sworn because it's what this situation can actually do to people trying to find the best way to parent.

I know it's incredibly difficult for the kids. I'm not taking away from that.

It’s so hard isn’t it, because the understanding around PDA is in its infancy, but unfortunately that seems to open the door to self-appointed “experts” with no qualifications other than being a parent of PDA kids (or are late realised PDA themselves), who then give dubious advice steeped in pseudo science.

The vibe I got from Casey Erlich in particular was that her approach was like attachment/gentle parenting to the power of 1000. The idea that no motherly sacrifice was too great for her child, because “nervous system disability” and “burnout”. Sorry, no. No way could I have done that.

There’s another parent blogger who I won’t name, who wrote about her (hellish sounding life) with a PDA child. Child is now a teen recluse and older child left home to live abroad at the earliest opportunity. How depressing. Makes you wonder whether letting them rule the family was really worth it.

Apologies as I didn't see your previous thread, but have you researched PANS/PANDAS? Several of the symptoms might fit. I know very little about it but I read the website recently when I saw it mentioned on here and I didn't know what it was.

I'm not sure it would be good for a PDA child long run to do everything they wanted!

It's a profile steeped in anxiety and if you did that, you're basically communicating that the anxiety is reasonable in some way?

Short run/in crisis maybe you have to while you try to help them regulate.

Putting DD in water or something squishy often helped, or movement. Pool, bath, swing, trampoline, sand, mud, dough...

It almost always turned out there was something going on with her when she was being extreme. Just not always easy to figure out what. Normally someone "beed mean" to her; often a social communication misunderstanding.

Mine has ADHD also so just giving in can be a tad dangerous as she can be impulsive.

She dug most of a tunnel under the fence to get to her friend in lockdown!

Yeah, I read this stuff and question how we’re setting up these children for long-term success. Eventually, the parents will be gone and the children will be adults. If we haven’t equipped them appropriately to function, what will happen?

PDA-Autism sounds absolutely hellish. But the solution cannot be, “just go low demand all the time” without also exploring pharmaceutical and therapeutic options first.

@Matthew54 yes I feel this to be true. Every person is unique so I understand these generalisations are annoying. In my case gentle very often goes out the window.

What I have instead learnt is pretty invaluable is ' what's going on, tell me '. After a while it becomes clear there's alot driving it. There's no way we can all just accommodate continually though, the impact on others is too much. I find the whole thing really sad tbh. I often see what it takes but it's realistically not achievable.

Yes, I agree @Matthew54. I think, like anything, popular approaches come and go as trends. I can totally see that low demand is necessary and does work a lot of the time. It’s something we’ve fallen into at home as we see fit.

Equally I can see how easily that can descend into “do everything you want all of the time” especially as the teen years hit. The end result can often be a kid who doesn’t come out of their room, let alone leave the house, doesn’t brush their teeth or shower, doesn’t speak to anyone outside of the family unit. It’s a sad miserable existence. I refuse to let that happen to my kids.

As for PANDAS @CocoPlum I am very suspicious of it. To me it smacks of a convenient pseudo-diagnosis for parents who don’t want to accept autism in their child. In other words, it isn’t autism, it’s just something that looks exactly like autism, but unlike autism, it can be cured 😅

@Jellycats4life yes everything you say I agree with here. I too feel uncomfortable with the PANDAS diagnosis for those reasons.

I also see how certain accommodations I have allowed have actually become problematic in other environments. Swearing at the gaming system for example! At one point I let it go and then it became a nightmare and just wouldn't fly with dad and younger siblings at their home. I too now can't stand hearing certain words shouted at the screen as it intensified under my 'allowance' of it. So I made that issue worse at one point. We've since backtracked/ compromised.

With teeth - sorry but you can't walk around with rotten yellow teeth. If you're missing tonight, it's double tomorrow morning with mouthwash. It kind of works for now but I know a point comes where the reply is no to most things. And I've tried every possible toothbrush.

I basically bribe for most things. The desire to naturally ' comply ' isn't there and it's exhausting. But I think it's dangerous to just let everything go.

Has DS discovered "Hismile" toothpaste? It's been a game changer here!

IMO what's happened is that people have taken the sensible no-demand approach that's meant for times of crisis and then applied it wholesale.

Our lives are full of demands - both internal and external - and if we don't learn to deal with that then life will be impossible. Equally, in times of crisis it's hard even for NT people to cope with demands made on them, so it makes sense to remove as much pressure as possible until things are back on a more even keel. You can't learn how to control yourself when you're out of control.

Once the time of crisis is past you can then work on your list of boundaries and how to enforce/encourage them. I think personal boundaries - that's someone else and you can't control them - are especially important.

Never heard of this! Off to Google......🙏😄

@GrouchyKiwi yes excellent advice. We notice when we need to back right off and let more things go. It's almost always when school demands are too much. We acknowledged that and then don't stress over certain things as much. It's a constant re balancing in reality rather than fixed one way.

Nor realistic
Most of us have no option but to get on with it .

She's been in isolation all day. She kicked a teacher. My 3 year old got home 2 hours ago because she's been sick and because she got home first the 5 year old smacked her in the head because the youngest shouldn't be home first. God I'm so close to just giving up
Dad picked up the eldest. His work are just as fantastic as the last. She opened up a little to dad. Told him she doesn't like being bad and she thinks we don't love her. Dad reassured her of course we love her and we want to help her.

I'm upstairs with the youngest having a cuddle because she's sick. Eldest is screaming for me. I can't split myself in 2. Dad's got to go back to work shortly. And then I need to look at tea.

But I can't leave the youngest because I can hear it in her voice. Today has clearly been a bad day

Someone posted about living separately. It's not even close to financially feasible. Plus again maybe I sound selfish but the idea of just me and my 5 year old alone makes me want to scream. At least my husbands here to help.

It sounds hard but at least school are seeing the behaviour now .

@Tittat50 could be a great stocking filler.

OP, sorry, will shut up about toothpaste now. As a pp said, this is actually really useful evidence of disregulatation. Is school putting stuff in writing?

I wish there was something more I could say, you sound broken and in so sorry.

one practical thing you could do is make sure you keep a diary. This will be useful to show any professional whether medical or educational. It would also be useful as a way to document any changes from when you start the medication.

@Tittat50 you could look at OraNurse toothpaste. If foaming is part of the problem, (at least) one of Sensodyne toothpastes doesn’t have Sodium Lauryl Sulfate, which is what most commonly causes the foaming.

One of the problems, I think, is some see low demand as no demand forever rather than low demand at the moment alongside other changes and therapeutic input.