She doesn't look autistic

[Whoistheeasterbunny]

But she doesn't look autistic"

"It must be your fault, she's only got you"

"Aww bless her all kids are like that, you just need help with your anxiety"

"You're making up her SEN"

"A diagnosis won't make any difference, the schools should support her anyway"

"You just need parenting lessons"

"ALL children should be in school"

"If she was in school your life would be easier"

"You just need self care"

"Can you help me with this?"

"I want to share all my problems with you, don't worry about your child, she'll grow out of it"

"You just need a job"

"She's picking up on your anxiety"

"You need to get out more"

"You need to create routine"

"You need to be stronger"

"All kids play up"

Perfectly put Dellspoem. Anyone been or going through similar can understand the op a mile off

Sorry you're going through this

I am not going through any of this and I understood , too, what OP posted in Her OP

Exactly. I knew immediately what the OP was talking about. ASD 14 year old boy. God the nonsense people come out with.

And don 't get me started on the still -peddled 'refrigerator mother' theory that i have heard actual real life so called 'professionals' say.

So sorry OP.

Her post is very clear

I don't even know at the moment, I think I just needed to speak up and try and find my power again, as so many people have tried to take it away from me, and I don't want to lose any more of myself, in this experience.

The early help worker tried to create a narrative where i just needed parenting tips and a routine. She tried to re-frame it as me refusing to take my daughter to school, and that all i had to do was encourage her and make the walk there fun.Her supervisor had been questioning me on any possible trauma, rather than accepting any notion of SEN, just because we were in the process of diagnosis (we still are). I mentioned that we had moved house and area when she was two and that her new nursery (the only one in the area) had really upset her, whereas her first one she was really happy and settled at. He was more focused on this change in her life two years previously, than the fact she was nuerodiverse. The Early Help worker just seemed to quiz me on my past and my difficulties in the first few years of her life. All the difficulties were though, was that I had had to move from a few different temporary accommodations (three in total, each lasting 2-3 months) until I had a council flat when she was 7 months, and then I moved again when she was 2, to swap from a flat in a rough estate to a house in a nicer area. I was having a lot of difficulties, but they were all centered around her not sleeping, her intense hour long meltdowns, the constant need to be in my arms, issues regulating, socialising, banging her head on the wall, needing to breastfeed for hours and hours of the day.

Really need to stop taking on board those comments which blame me for my exhaustion!

We are home-ed now, even though it doesn't feel like we manage to do much actual sit down learning. dd refuses to read with me, but somehow has taught herself to read online, after struggling massively at school with phonics. I'm dreading when they try and enforce this home-ed list and if they'll try and challenge my decision to home-ed. Been trying to spend any free energy I have on creating some calming learning spaces, in case anyone demands to see inside my home (not that they should be able to, in my opinion!)

It wasn’t clear and lots of posters were confused. She posted a list of comments and then a photo of her back. I read between the lines but it was far from ‘clear’.

When I tried to get my daughter diagnosed, the pediatrician told me they have to be cautious, because it could just be the parent causing the issues.

He also said a lot of people fake their child's issues to get a diagnosis for the DLA. Really helpful mate... He probably thought I was a refrigerator mum, because I was so numb to life, at that point.

Shit isn't it?

Whatever you do, keep the bitey end away from your arse...

Been there, not done that, it hurts.

I will take full measures to keep my bum levitated above teeth level, at all times.

I've taken a lot of beatings from my daughter, a lot of them just as I'm stirring awake and vulnerable in bed. I'm too drained to restrain her as much as I used to.

But this one hurt differently, I really thought she had damaged my nerves. I'm still in pain now.

I’m very surprised a doctor said that. It’s very unprofessional.

I’ve been through the assessment process twice, once for me and one for my child. They do have to be thorough and ask about any past trauma that could be causing the issues as they can display similarly, but a team of experts can identify the differences.

We've been referred to Early Help multiple times by multiple agencies - school, SFEDS, CAMHS, GP. Every time, Early Help listens to me and says "oh you need specialist support, we can't help you". But the specialist support IS all these agencies and the wait lists are YEARS long. Because my daughter lashes out at me and herself, she doesn't have siblings, social support aren't interested. I've had it described as being in an abusive relationship that you're not allowed to leave.

OP, I get it. And until my daughter had her burnout, I had no idea how little help existed. Does your GP have a social prescriber? I've found that to be the most helpful so far, mainly because she has SEN children and understood me, she'd navigated the system herself.

Ouchy. Bites are really sore.

I learnt by trial and error having been head butted in the face, had chunks dug out of my face by little nails, been bitten on the bum and hands, kicked. Got it so the only options were head butted on the arm (infinitely less painful) or spat at.

And those comments are vile but sadly familiar.

She might learn to be able to regulate her emotions more and gain better self control of her actions as she grows older. Some autistic kids do.

Some "help" makes it worse. Some help is default blame the parents.

First of all, this: ❤️❤️❤️

Second, has she got a diagnosis? Is she in mainstream school?

Edited to add, I’m sorry, I’ve just read the rest of the thread. 🙄

It’s awful how loud you have to shout to be heard. Do you have any other family support?

I’m so sorry, OP. The lack of support and understanding from professionals is shocking. I really recommend Yvonne Newbold’s courses for parents dealing with violent and controlling behaviour from SEN children.

OP and other posters going through similar, your stories are heartbreaking.

What are parents meant do and where are they supposed to go if there's no help out there??

What type of support would help and is this available in other countries? What do those in this situation think are the causes of so little support? I would guess lack of funding as the main thing, and there is likely numerous political reasons for this!

Sorry for all the Qs. I'm a mum with ADHD and my 2 kids likely have it too. Through my experiences I'm aware of how little funding/awareness/interest there is for ND conditions.

The only thing I can think of is proper day centres, with staff trained in SEN, where the child can be supported by additional adults, but where the parent is allowed to come in and help them also regulate when they need it. Co-working spaces in the same building, for parents who need to hold down some kind of job, and to be allowed by their company to work from there every day. Work from home roles prioritised for parents of disabled children who can manage this. There would be an hour or so of learning time each day, in specialised classrooms, for each level of ability, but that would be all, so they don't get wired. No pressure on those children to be in school or meet certain targets (which is just mental when you actually think about it).

To also be able to stay there even in the evening, if you need to, so that if the child is kicking off, there's staff available to restrain the child. A healthy canteen, affordable, as we're too wired to cook.

To be able to call up the service and they'll come and help you get there if you need it, so the child can use a sensory room or similar, if they are bored or unregulated and having a meltdown at home.

Therepeutic rooms in these centres, a variety of SEN friendly activities.

I mean, it sounds like disability utopia, but it's all I can think of right now.