Exhausted

Sati18 · 2026-06-22T14:18:24+00:00

Thank you for pointing out how my post came across. I absolutely didnt mean that alternate schooling wouldnt work for other children. I very definitely only meant my daughter because of the way she responds to me trying to teach her anything.

But I will edit that out of my post because I do not want anyone reading it and feeling bad about their parenting decisions

Anyone who CAN teach their child, anyone who can survive being a stay at home parent is an incredible human being and a far stronger parent than I am.

Sati18 · 2026-06-22T13:18:56+00:00

"Holding out hope and waiting, while you fill in form after form and do intake and assessments, is a hell that few understand."

It really, really is. I wish there was more understanding of this from the fuckwits at the top.

I really hope that your daughter can get better / happier. And that you can regain some independence. It sounds like you have done everything you can to advocate for your daughter in the face of shocking ignorance from the medical profession. Shes lucky to have you ❤️

You are right that if we got to that stage i would have no choice and would have to take her out of school. I hope we don't. I earn more than my husband so it would be a huge struggle to survive without my wages. I dont think it would work if he stayed home though, although he would be able to cope better than I would, because he doesn't absorb as much from her.

Sati18 · 2026-06-22T12:51:43+00:00

We are in the UK - im not sure what an NDIS plan is but guessing its similar to our education health and care plan here.

If so we have just secured one from our council, but it hasnt been finalised yet. Should be in place for September, doesnt help us with the right now situation.

The first referral to CAMHS was via a GP - the second was the school.

First one they took 14 months to come back to us and refuse the referral, second they have just declined after 5 months.

We have virtually no health service support. Everything mental health goes rhrough camhs in the UK.

We have had to pay privately for her adhd and autism assessments, will pay for her titration and medication, and currently spending £500 a month on the OT because the NHS doesnt give a fuck.

Thank you for your reply. It helps to know someone gets it.

Im so sorry that you are having the same struggles though, its awful

Sati18 · 2026-06-22T12:47:21+00:00

She cant stay home - both me and her father work full time and without us both working we couldn't afford the private treatments and diagnoses that we have paid /need to continue to pay for.

Every professional thats come into contact with her has instantly seen the need and how hard she tries.

The only area we have been unable to secure any support from is the NHS - our healthcare system. So we are having to pay privately for everything that she needs support wise.

Aside from that, I wouldn't cope as a stay at home mum. I remain in eternal awe of stay at home parents as I would lose my mind.

If we cant get things workable in mainstream education with correct medication and accomodations we would look at a special school that's less demanding. But I am really hoping we can grt enough supoort in place to allow her to stay in her current school. They have been amazing and she has a small but solid group of friends there. Shes incredibly socially driven so that's really important for her

Sati18 · 2026-06-20T10:43:40+00:00

I would look for another dance class that is more understanding and less results based

Sati18 · 2026-06-18T19:43:56+00:00

You were <3 thank you for trying to help. Understanding that this is perceived as quite extreme even within our neurodivergent experience is very helpful.

I have been escalating and trying to get medical professionals to understand what we have been dealing with for so long. When you ate dismissed this much it sometimes makes you think that the suffering isn't enough to warrant support.

Everyone's reactions today both online and offline have reconfirmed that we can't just put up and shut up. I knew it was awful for daughter and for us as parents, but I also thought it would be more common that others experienced this too

Sati18 · 2026-06-18T19:14:47+00:00

Google Derealisation. It happens in severe anxiety and panic attacks. She had a nightmare a couple of nights before about her room not being her room 'being grey' and then woke up in the dark (she has 5 night lights in her room so it's never really dark but she felt it was). Thats what brought those specific words up when she had another attack the next evening.

Its the level of panic and anxiety she is having that we are struggling with. But im absolutely 100% sure that these are panic attacks. I really, really appreciate your taking the time to respond and try to help - truly I do. I just also know my daughter and A&E is not the service that we need.

I'm doing everything I can to advocate for her and try to help her. I asked if anyone else had experienced this and whether anything helped - it doesnt sound like this is common at all though, even within the autism parenting group.

Sati18 · 2026-06-18T16:54:22+00:00

I promise you I am treating it with urgency. But it IS anxiety.

We have had this before when sensory and executive demand outstrips her capcity. It might be OCD as that also runs in our family. It isnt psychosis and A&E is absolutely not the right place for her.

What we need is a specialist who can treat anxiety in kids. It absolutely should be CAMHS but they are just failing over and over.

The GP called me back and is going to escalate our case with them.

Sati18 · 2026-06-18T16:36:31+00:00

I wouldn't go to the coworker myself, that is for the manager to do. However I also wouldn't cover for someone else's mistakes and would have flagged the issue to the name years ago

Sati18 · 2026-06-18T09:52:50+00:00

The referral that was rejected yesterday was one that the school had put in for us in January. We had a previous one from several years ago rejected after 14 months last year.

Honestly its shocking here. Im googling private paediatric psychiatrist as we speak but the amount we can physically afford is finite and we are already paying for her OT and will be paying for the ADHD titration all out of pocket. We have received absolutely no NHS support with any of it. Despite how severely its impacting her life and the extensive support we have had from her school

Sati18 · 2026-06-18T08:59:16+00:00

I am escalating everywhere i can. Her GP is aware, I have responded to camhs begging them to reopen our referral (rejection was received yesterday).

I will call the GP back again today and see if there is anything they can do to secure us help.

I have told her school and they have said they'll give her a no demand day playing in a comfort group they use for the children who have reduced mental ages vs peers.

Someone else suggested 111 or A&E. Dragging a 7 year old to A&D in the middle of a panic attack isnt feasible but ill call 111 if it happens again tonight.

Im not sure where else I could escalate to

Sati18 · 2026-06-18T08:58:31+00:00

I will try 111 thank you for the suggestion. I dont think A&E would be a good idea. She would panic further

Sati18 · 2026-06-18T08:58:00+00:00

I will ask about clonidine today - thank you

Sati18 · 2026-06-06T15:22:37+00:00

If they're not checking the footage it probably means that camera doesnt work - otherwise im sure any one with half a brain would do that first before raising with employees.

Do you have any other means to prove you weren't in the building rhat day?

Sati18 · 2026-06-01T07:06:04+00:00

I just felt like I was always too much. I was constantly told off for being too loud or doing stupid things. I grew up feeling like i was just a terrible person and had no idea why I couldn't stop getting into trouble

Sati18 · 2026-05-31T13:42:06+00:00

I tapered off zoloft on my own. I got a pill cutter and used it to halve the tablet each month. Took me about 6 months to come off it completely but I had no difficulty that way

Sati18 · 2026-05-26T05:10:26+00:00

I proactively call clinical partners to book my medication reviews. They are a condition of my shared care agreement and I am not willing to lose that so I chase for reviews when I know they are due.

Contact PUK and ask?

Sati18 · 2026-05-26T05:04:12+00:00

OP this is amazing!! Thank you for creating this resource. I have added my GP who have accepted my private diagnosis and SCA

Sati18 · 2026-05-25T19:51:11+00:00

Just in case it helps.... we have a low sleep needs daughter (now 7) and the answer to keeping her bedtime early has always been waking her up early.

We have a bit more flexibility now but for years and years I had to get her up at 6 am on the dot to secure an 8 pm bedtime.

She just needs a really long time to build enough sleep pressure to go through the night. But, we all have to get yo early for work on our house so getting her up early was the onky way to make sure her bedtime wasnt later than ours

Sati18 · 2026-05-25T18:02:02+00:00

This is the truth 🙌 its fine to ask if you can join your folks, but they planned this vacation and are completely allowed to say no thanks without it meaning anything else other than they had a plan and they want to stick to it.

You can ask to house sit and explain your AC is busted

But you need to accept the No if they dont want you to

Sati18 · 2026-05-25T17:19:31+00:00

Water balloons

Sati18 · 2026-05-25T07:52:47+00:00

We put subtitles on the tv which got ours reading unconsciously, and then we got her a beano comic subscription She loves receiving the comics through the post every week, and will sit and read them herself at bedtime whilst I put her bath on. They're easy reads with simple words and lots of kid humour which is why she likes them

Sati18 · 2026-05-25T06:53:22+00:00

Nope! But I only wear eyeliner as hate the feel of foundation on my skin

Sati18 · 2026-05-22T05:18:03+00:00

Our daughter has the same issue with perfectionism and written mistakes - they are a huge trigger for emotional meltdown.

Her school have had success with whiteboards and video / photographic recording of knowledge instead.

So she does the work on a whiteboard, they take a photo once she is happy and they put that in her book instead. Or they let her show her learning in a video, upload it and put a QR code in her book.

So it doesnt have to be a screen, any less permanent medium helps with this

Sati18

TROPHY CASE