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?!

I am so sorry , I have no constructive advice to give . Can I just sit next to you and hold your hand until someone wise turns up ?

Ohh I'm so sorry for you.

My autistic son is very violent to me, I have a black eye currently.

You must be so worn out.

What are the triggers for her violence? What is your routine like?

Here to hold your hand. I have a profoundly autistic DS5. I could have written your fourth paragraph.

Honest tips? Anti-histamines for DS when he won’t sleep. Wine for me. Outdoor time. Laughing in the face of rules about screen time. Being a royal pain in the pediatrician’s arse until she put DS on Ritalin and Rispiridone.

Does your DD have EHCP and could you look
at putting her in a mainstream setting until this is sorted?

Have you looked at respite options from
your LA?

Can you give us a rough idea of where you are? There might be some groups locally we can recommend.

Oh and YY to violence. We’d just arrived back in the UK after a surprisingly successful holiday when DS boiled over and bit me on the left breast, drawing blood.

Most of the time he just injures himself. He’s a head butter so I often throw him
in a play pen full of pillows until he regulates.

Thank you so much for the hand holding 💐 her routine definitely has changed since we moved, I try and set different activities up throughout the day but she’s got to the point where she doesn’t engage with them and it just leads to more frustration and outbursts. Other things have stayed mostly the same though - food timings, bath timings, bed timings etc.

Thankfully they do have a space for her in September but it honestly feels like at this moment in time (I know I’ll probably feel a bit better tomorrow after some sleep) how do I even survive those extra 3/4/5 weeks?!

Respite in our area is practically non-existent, I’m down south 💐

I sympathise op. My week end away was ruined by ds 13 constantly asking why he couldn't have a pint when we were rural and frequented the local pubs... Draining.

@Deguster what are those medications and how do they work please?

Jesus christ. Don't dose your kid up on antihistamines to make them sleep because you can't be bothered with them any longer.
I'm autistic, and have an autistic DS. I get it's hard. Really fucking hard, especially when they're violent. But essentially drugging your kid is far from ok.

I hear you. My son is severely autistic, non verbal with very little understanding. he’s an adult now. He’s driving me absolutely crazy this summer. He’s trying to rule the house constantly switching all the lights on, shutting windows, pulling curtains, throwing stuff out of windows etc etc etc. he gets very aggressive if told no and it’s continual. He’s built like a brick sh*t house too. He’s gotten into stupid routines that we all have to bow down to or put up with the aggression. It’s very wearing!

Thousands of autistic children take medication to help with sleep and various behaviours. It can help them function too, it’s not just for the benefit of parents. Days and days and days of no sleep means you can’t parent properly. Clearly your child sleeps! The odd anti histamine here and there isn’t “drugging” them up ffs.

No actually. My child doesn't sleep all that well. Neither do I. I still wouldn't dose my 7 year old kid up on antihistamines based on advice of someone on the Internet. If they were prescribed specifically for sleep that's different but just going out and buying piriton because you want some kip is completely ridiculous.

Helmets are not restraint as they do not prevent her doing anything.
I work with children and prescribe helmets often. First trial is often a rugby helmet type from somewhere like decathlon.
Measure her head circumference at the level of her eyebrows and order . They can be ordered and collected from most asda branches. Sports shops.do them too but often more choice at decathlon
Good luck

@imayhavelostmymarbles I didn’t even think of that thank you! Do you know any specific departments I can contact or ask for a referral? Like what departments or agencies actually prescribe them? That’s been another hurdle is no-one seems to know!

"can't be bothered with her"?

@CoffeePlease91 - I would also make an appointment with your GP, explain about her SIB. My son was the same at this age and was put on a low dose of rispiridone. The change in him was really quick. Within days the SIB and OCD behaviours had decreased significantly enough for us to be able to manage and he started smiling again.

It's hard isn't it I have a severely autistic non verbal 12 year old I bloody hate the summer holidays, ww get one day a week during the school holidays in a special needs play scheme which helps a little

Hi OP

DS has ADHD, SPD and PDA as well as profound autism. He used to smear his poo overnight as a toddler as well and had to be sewn into his PJ’s every night. We used antihistamines (literally just baby piriton from
Boots) when he was absolutely beside himself with tiredness, which exacerbated some of the autistic behaviours such as stimming, rocking, flapping, biting etc - which in turn were keeping him awake! DS would quite happily never sleep but then he’d trot off to school and start hurling chairs in frustration because he was so exhausted. DH is a medical doctor which I suppose made the decision slightly easier, although there were never any side effects from our occasional use.

After a huge battle because of his young age, we eventually got him Ritalin which is prescribed for hyperactivity from
age 4. They are reluctant because it’s also a controlled drug. It’s been pretty life/changing for DS tbh and his autistic behaviours (including the violent ones) are MUCH better controlled. The Risperidone is an anti-psychotic but it’s also a mild sedative and it’s commonly given alongside Ritalin. We don’t need the AH’s for sleep any more, but tbh I find the Risperidone too strong for our needs. We’re sticking with it for now because the combination is working so well. DS is in mainstream with a 1:1 and was expelled from a school part way through Reception. He can now cooperate with the class and remain in the room focusing on learning. He will still only read books about his chosen subjects, but he will sit down and read/do jigsaws rather than trash the room and injure himself as he used to.

Obviously this is not the solution for all and I cannot imagine any of the above being recommended to those with mild ASC traits. But it’s been a life-changer for us.

I have been where you are though, very often. It can and does get better.

Another thing that helped with self-injury was one of those sensory suits. I’ll see if I can find a link…

One of these OP:

www.amazon.co.uk/Sensory-Stretchy-Full-Body-Relieve-Hyposensitivity/dp/B07SDDNP6X

I think because you also don't sleep that it doesn't really affect you, if on the other hand you needed sleep to function you would certainly agree and you are definitely over reacting. I give my son melatonin to help him sleep. It means he wakes up a bit more refreshed and I get enough sleep to cope the next day.

@MistyRock we tried melatonin for DS too. He wouldn’t eat the gummies but we eventually got the tablets prescribed. They didn’t work for us, but I know they do for many.

The great thing about Rispiridone is that it’s liquid! So pre-bed glass of milk and he’s out like a light. He’s a different child when he sleeps (and I’m a much better mother/human!)

That sounds amazing. You (and the child) just cannot function without sleep. I also have a medical condition myself and it makes me very tired, so I need good quality sleep otherwise I literally run on empty and have no patience for anything.

Also OP - do reach out to specialist organizations such as the NAS. They introduced us to the Lorna Wing centre where DS was diagnosed. There are often local charities too - they vary in effectiveness tbh but there are often meet-ups with other mums/dads and their kids. It meant that DS could make some friends. It also offered training in coping strategies offered by psychologists and OT’s.

Do you have any support for your own Autism? I'd be worried you'll hit Autistic burnout, it's important to look out for yourself too

Absolutely @MistyRock - my DM thrives on black coffee and Marlboro, reckons sleep is for the weak, and was a tad judgy when we started the medication. I am the total opposite and am immensely grateful that modern medicine can help DS.

Whatever gets everyone through relatively unscathed works for me: we’re all just doing our best.

Those with experience of Piriton, is there any particular kind? Liquid or tablets? I have piriton liquid in the cupboard for our autistic son, which we use occasionally when he's had an insect bite, but I've never noticed it changing his mood/level of activity.