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?!

Piriton makes my autistic 7 year old hyperactive would make his sleep worse!

@hilbil21 we used the syrup, it’s the one with chlorphenamine (sp?) and I think the dose was 2.5ml for his age at the time. Not all AH’s are sedating.

Interesting. Will look into it.

No advice but solidarity. My 9yo can be violent. Right now he's going through a phase of butt wiping on anything but toilet paper. It's literally shit.

Hi OP - I hear you, though I don’t know what my DD’s condition is (she’s physically and mentally disabled but don’t know the extent of the latter because she understands everything but is non verbal).
She just wants to move (but can’t stand or walk) so she wants me to carry her, dance with her, throw her in the air (not exactly that but a tiny bit), help her bum shuffle, move her in the bath etc. She bites me if I speak to anyone or puts her mouth over mine. She also rarely sleeps more than four fucking hours and usually between 10:30pm and 2:30. It’s like a form of torture when she’s tired. She cries if we go somewhere new or if I drive a slightly different route (she’s just turned 5, and has been doing that for years). Doesn’t like new places or new walk
. I’m supposed to be her full time entertainer and her body and her source of comfort, all without any sleep and she does things that endanger herself (throws herself backwards when on the floor). It’s utterly exhausting without school.
I’m in the South and I’ve been offered zero from the council ever. It’s exhausting

Have you got a social worker.You can self refer and hopefully access respite care and other support like a funded PA . This all takes time though. The family bought my autistic grandchild a helmet themselves, expensive tho.

Why don't you bet direct payments for a pa to get a break ?

OP - have you applied for DLA?

We get middle rate for DS and it helps with all the sensory stuff he needs - we’ve also got a blue badge.

Sounds very hard, I’m so sorry. When you say she’s too much for fam and friends to help - is this coming from them or you? I just ask because I often generally don’t ask ours for help because I assume they wouldn’t cope with meltdowns etc, but have had a few people suggest recently that I should at least let them try as a one off for respite.

and the early night with iPad for a break sounds sensible for your sanity - don’t beat yourself up for that!!

The OP doesn’t have autism.

she says she does in thr title

I read it that way too, autistic parent = parent who is autistic.

Not being pedantic either, as that might affect advice given!

My DS is a year younger and sounds similar, although less self harm on a daily basis, but we've had phases and incidents when his routine is broken so I can imagine all too well what you are going through. He's attacked me a few times in the last year - when he completely loses it - and I'm starting to really worry about how I will cope when I can no longer physically restrain him. Low point this year was when he attacked me on a plane (and we won't be going on one of those again) and I was so focused on calming him I didn't realise for ages I had blood running down my face.

I'm so glad to hear you have a SEN school place for September, that will make a huge difference. We also relocated in the last year and I was terrified of ending up homeschooling again - but no matter how hard you push it can be a lottery. He's settled in well now and I hope that a couple of months down the line you will have this respite too. It's a huge weight off to know they have that consistency and support from teachers and staff who really get it. The number of kids stuck in mainstream or at home is heartbreaking.

The PP with non-verbal adult son who tries to control the house (sorry can't remember your username) this is such a fear of mine as I can already see it happening with DS. Just lots of little things that have to be "just so" lights/doors/stuff hanging up where it wasn't before all get changed constantly, people crossing their legs or arms when sat down! While it sounds minor or silly it's draining along with the rest and with no breaks through the summer and I'm worried that it's escalating .

OP I'm in a WhatsApp group with autistic mums from my area which is a fab place to offload and chat about silly day to day stuff privately with people who actually get it. My own friends are supportive and I tell them some stuff but until you've lived this life you can't fully grasp the challenges. I would be happy to chat with you, or anyone else here, if that's something you would like feel free to send me a PM (and let me know here if you do as I haven't used them in years so probably need to go on lap top not app?) I know how overwhelming this is for me, but I have DH to take his share and give me breaks, no family members can handle him any more, it must be so incredibly hard as a single parent.

Can you find alternative things to punch - been bag, throw a ball at a wall, cushions, punch bag?
You can buy a helmet your self.

It also sound like she needs a new routine. We have a daily planner where we list what's happening that day. We also keep the routine fairly consistent. Get up same time, eat at same time etc. just changing activities. My son is also sensoryseeker, trampoline helped.we got cushions for head banging. Lots of opportunity to exercise plus down time - ds loves utube 🙄

Routine is very important in our house. We don't do the same activity every day but we do tv time in the morning, then some kind of physical activity and/or outing, then lunch, then some sensory play, snack, ipad time, dinner, free play, snack, shower then 1 hour of TV and bed. Our son is 7 and has been having a really difficult time recently, I suspect hormones are the cause.

Ds takes antihistamines for his havfever and they make him hyperactive, this may be due to his comorbid adhd and food allergies though. Melatonin made his sleep worse too, and his behaviour crazy.

I don't know why they say its going to take ages for a helmet, we got ours very quickly, not that ds will wear it! Ours was a soft rugby type so just pick one up from decathlon or online if they are dragging their heels.

Also call social work and ask for a disabled child needs assessment and call your local authority and ask for a carers assessment, you are legally entitled to both! They will take forever and a day to sort them out but it can help you get access to respite.

The consultant paediatrician referred DD to a department within the hospital (might have been orthotics) for head protection. She can’t stand the NHS helmets, so we had to search the internet for something she accepts. This wasn’t available when we were looking, but the children’s one (in pink on a girl, but other colours are available) looks good to me (unless you want full face protection, another complete no no for DD, who actually needs it):

www.healthandcare.co.uk/blog/protect-from-head-injuries-with-epilepsy-helmets.html

I don’t know how much it costs, but DD’s costs about £100. (A good use of DLA)
She’s worn head protection for about 11 years, and nobody has ever said anything about restraint and assessments; although the thinking would be “she suffers head injuries, it would save her life, therefore it’s in her best interests!”. That is the legal test for adults with learning disabilities, who don’t have the capacity to make complex decisions about their welfare - although she was under 18, when she started wearing it. She agrees reluctantly to wear it, and while we all persuade her, nobody forces her to wear it.

@Goldencarp She says she is asking advice from fellow Autistic parents

I took that to mean “fellow parents of an autistic child” as OP only mentions DD in the actual post.

@Deguster That's not what an Autistic parent is though... it's a parent who's Autistic. Like if you had a child with diabetes, would you say you were a diabetic parent?

Well no, but the OP makes no other reference to being autistic herself, but only to her “health issues” making things trickier, so I expect it was a colloquialism. I’ve also used the term to describe myself (NT) and heard it used by others at our parent/child groups for ASC kids.

Yes I think it's just OP's chosen phrasing. There's no mention of her having autism or any of the additional struggles that would bring in her post, so I think it's just the phrase she's using (like autism parents, perhaps).

Hi OP I'm a Disabilities Social worker and I have a DD with Autism although hers is fairly mild. I would push again with the council and respite. I know that it's patchy and I'm up north so don't know your area but the level of her self harm and the impact on your health condition would all would towards meeting criteria for respite or payments for a PA. The other things to explore would be respite through the medical route so for example where we are Camhs has some overnight provision. Also, is there a local carers assessment facility? They can sometimes be helpful for accessing support locally and for things like send swimming/softplay sessions discounts places etc which I know doesn't give you a break but is still handy to have.

Believe me, our tiny number of not-horrific days are when the pollen level is is high and DD needs Piriton. I almost jump for joy when it's pollen season.

I think it’s pretty clear from the post that she means other parents of autistic children.