To feel like I can’t take another day of this s**t?! (Any advice from fellow autistic parents please?!)

[CoffeePlease91]

I am a single parent to a severely autistic child who is 8 years old. We relocated in April and they had no spaces in the nearest SEN school so she has been off school since this time and homeschooled instead with the support of where she went previously. Obviously that doesn’t matter now given it’s the school holidays!

With the change in routine and everything going on, she has started punching herself really hard, some days it’s continuous! She’s give herself black eyes and everything!

I’m not particularly very well myself (I developed a chronic health condition after DD was born). I very rarely get a break from her as she’s too much for family and friends to deal with.

Honestly I feel completely and utterly defeated and shattered. I honestly feel like someone has just beat me down, run me over, whatever else can be used to describe it. The constant screaming and meltdowns, the continuous hitting herself - I have well and truly had enough.

She is awaiting behavioural assessments but this is going to take some time to complete. I’ve asked for a helmet as a temporary measure so she doesn’t do anymore damage to her head, but they said it’s seen as a restraint so that needs its own set of assessments which all takes time. Some nights I put her to bed at 6pm with the iPad because I physically and mentally can’t deal with another second of it.

Any advice from any fellow autistic parents on how to deal with this before I reach my breaking point?!

maybe shouldn't describe herself as autistic then

My son is severely learning disabled and autistic with very challenging behaviour.
I haven't read the whole thread I'm afraid but have you explored meds? My son had some success with Aripirazole for agression but it seemed to stop working. Then onto Risperidone which he is being weaned off as also now less effective than at first.
Interestingly he is prescribed an anti histamine (Promethazine) as a PRN for episodes of agression and self injurious behaviour. It is quite effective and far fewer side effects than anti psychotics. He also takes melatonin for sleep (not always effective).

I'm living the exact same life! I hardly leave the house, because he doesn't want to!
I have no strength to verbally try and get him dressed and out the door now.
When we do go out he literally meltdowns and hits punches bites me.
I can't lift him off the floor as he's bigger than me!
His dad wants nothing to do with him :(

I had to homeschool because trying to get him on the school transport was such hard work. The bus help wouldn't touch him or try and help me restrain him into his car seat.
He ended up missing so much school, that school asked me to homeschool as it was making the school look bad.

I took on a teaching roll that I have now failed because he won't engage. He won't sit down and learn. I'm waiting on a tutor to contact me this week as there is no special needs school availability in September for miles and miles around.

I can only hope that the tutor has more luck than me.

I want to let you know you're not alone xx

maybe shouldn't describe herself as autistic then

I really don’t think this is a thread on which to be snarky about the OP’s choice of words. If OP’s DD is anything like my DS it’s a bloody miracle she can type at all.

It's not clear at all, especially for (ironically) Autistic people as we generally take things at face value. And tbh, I actually find it a bit weird and insulting if that is the case

Why are people derailing the thread?
It's hard enough being the parent of a child with severe disabilities, either out people pulling the way the Op writes to pieces ,just why?

Please stop @kingsleysbootlicker.
It's obvious the OP here is desperate for help and this isn't helpful.

Thank you for all of the supportive and kind comments and sorry for the delay in response - I’ve only just found enough mental energy to manage a reply! 💐 apologises if I confused anyone with the title - I meant other parents of autistic children and didn’t mean to offend anyone 💐

I was always told that we wasn’t allowed direct payments because DD received school transport from the council… however I now feel like I’ve potentially been completely fobbed off (?!) so I’ve got in touch with the council today and asked for a carer’s assessment AND direct payment assessment and I’ve gone back to the paediatrician to ask for an urgent referral to the orthotic department who measure her up for a helmet and also he is going to ring me to discuss if medication could potentially be an interim measure until CAMHS get round to doing their assessment - I just hope something helpful comes from doing all that! 💐

Thank you again for everyone sharing their own experiences, I’m sorry for everyone’s struggles and it’s comforting to know people ‘get it’ and can show such kindness to people in the same boat ❤️

I also found a local group where you have to stay but there are workers there who take the children off and do things with them for an hour or two (all with disabilities) and even though they are fully booked for the summer, they do run sessions on all the other school holidays so that’s good to know! X

I can't advise, but just want to send hugs and sympathy. You sound like a fantastic mum.

Which professionals are currently involved with your child ?
I had an early help meeting at my sons special school the week before the school holidays,,for more respite etc ,I don't jknow how long we will be waiting as respite is minimal in my LEA, but at least we are on a waiting list.

I was always told that we wasn’t allowed direct payments because DD received school transport from the council… however I now feel like I’ve potentially been completely fobbed off

Thats rubbish! School transport has nothing to do with social care! DD had school transport all through her education; I was offered direct payments but always turned it down; as I couldn’t be bothered with looking for care workers and doing the admin - why do social services work for them for free? I left it to them to refer DD to a care agency; and do the admin!

I'm sorry you're finding things tough. My son is 10, autistic and non verbal but thankfully not violent. He has taken melatonin since he was approx 5 and it's been absolutely life changing for all of us. We had a few torturous years with very little sleep that when I look back, I have no idea how we survived. It has also been a huge benefit to him as he is getting good quality sleep.

Thats rubbish about the school transport- totally different thing- I an annoyed on your behalf. Where I work the pros and cons with respite organised by SS and Direct payments is that you are more likely to get support faster and the hours you want with direct payments but then the downside is that you are the employer so have to sort more yourself. Respite through SS, might (probably will )take longer to sort you might not get the slots you would prefer as they are all already taken and you don't get as much of a say about who/where etc - I work for a big county and sometimes the nearest availiable respite isn't very near. Social services should talk through this with you on an initial assessment visit. We have to do all our assessments witin 30 days of referal (again this may vary in different places ) so they shouldn't take too long to get in touch.

Forgot to add that the upside of SS sorting repite is that you don't have to do the financial organising side of it... depends on what you want really- Some people prefer DP others prefer organised respite.

Her paediatric called back and asked if he could do a social worker referral for some extra support given the severity of her behaviour and incase it doesn’t settle down once she goes back to school… is this anything to be worried about? Is it because he feels I’m not coping? 💐

You say that you’re down south. I’m in Kent and have an ASD daughter of 11.
We receive direct payments for a PA and she attends an SEN school. I’m more than happy to offer support advice if your fairly close by.

No social worker for children with disabilities is not the same as social worker for safeguarding.

As in its not about your parenting but the needs of your child meet their threshold for requiring social care support

No he will be doing an early help referral, it's to get you and your daughter extra support ,I felt like I was being judged a bit but they just wanted to help ,it's so exhausting dealing with this.

It sounds like an early review of the EHCP is needed as it isn’t meeting DD’s needs currently. Or potentially a reassessment of needs.

Being generous perhaps wires were crossed and the LA meant you couldn’t have direct payments as part of a transport personal budget while being in receipt of school transport, rather than direct payments from social care.

@backupplan1 who told you there isn’t any SS places for September? I ask because LAs and schools will often say they are full but full is not defined in law, and unless wholly independent on its own being ‘full’ is not enough of a reason to refuse to name your preference. The LA has to prove the school is so full admitting DC is incompatible. The bar is high, higher than an “adverse effect”, “impact on” or “prejudicial to”. Unless the school is wholly independent the LA can, and must, name the school regardless of the school’s objections unless they can prove the high bar for one of the exceptions. Have you appealed? In the meantime you need EOTAS.

@HerRoyalHappiness I'm not sure just because you and your child are Autistic that is qualifies you to comment on other people's ideas so aggressively. Just coz you choose not to do something doesn't mean others shouldn't. Unless you know OP her child and all of the circumstances that they are dealing with I think you are being bloody harsh.

You are very literal, poster. Yes, the grammar in the subject line wasn't correct but if you had even read the post, you would know that the OP was referring to her daughter being autistic rather than herself.

You are very literal, poster

i wonder why that could be...

it wasn't clear, op could be autistic as well as her child

Can people stop de railing the thread if you want to start a thread about Grammar start your own .