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?!

@CoffeePlease91 wow, I’m impressed by everything you’ve done since your previous post! Totally productive day. I can’t help with the direct payments stuff because I don’t even know what they are… but rest assured a stranger on t’internet is shaking her pompoms for you and DD.

I wonder if they might suggest some melatonin as a short term measure, hope it helps you both.

@backupplan1 your post made me sad, my heart goes out to you and your boy. I feel we l like I’m being a pharmaceutical rep here, but my son was the same until he tried Ritalin. I only asked for it because another mum from a playgroup for autistic/ADHD kids was saying without it her son wouldn’t have learnt to write. I was dubious, but it seems effective for us. DS was a complete refusenik and now he is at least occasionally willing to meet us halfway.

Hi OP I am so sorry its so tough for you and I have no advice to offer,Except to say my dh is autistic and any change for him is literally mindblowing to deal with. Moving house once,omg ..he was so nervous,frightened and just all out of touch with normality for quite a while. Had he not been at the same workplace for stability heavens above knows what would have happened,He is fine now and settled and back to normal but I can;t imagine how difficult it could be for a child to process too.Those days ,weeks were very hard on me trying to remain calm,stable and in control so I get how you feel. You can only do your best at it is enough and you sound like you are doing the best of jobs in really difficult circumstances to me. I send you love and best wishes xx

I really feel for you, take some deep breaths and try to stay as calm as possible. Can you speak to a doctor about this? Is there any medication they could prescribe her?

Hi OP, you have done fantastically to engage with all those phonecalls and to be following up on getting more support - absolutely huge achievement.

Others have mentioned Melatonin, which is very commonly prescribed by a paediatrician to help with sleep.

For one of my autistic children, they need a combination of Melatonin to help them fall asleep, and Phenergan to help them stay asleep at night. Weirdly, slow release Melatonin doesn't work for my child, but Phenergan does.

As others have said, Piriton can work great for some kids, and do nothing/ make things worse for others.

So the moral of the story is to be really persistent in going back to the paed and asking for adjustments to meds if they don't work first time.

I know services are very badly strained and we don't ordinarily feel it's right to keep hounding medical services and pushing for help. But you must get rid of that mentality (if indeed you have it!) in this situation and persist .... because you are fighting for what you need to survive in a desperately difficult situation. You are handling an unmanageable amount.

For goodness sake don't ever feel bad about an iPad in bed at 6pm! You are in the trenches now. Do whatever you and DD need to survive until more help arrives.

Well done for engaging with early help / disabled social services, don't try to put a brave face on it when they come to assess you, show them videos / audio recordings (if you feel comfortable to share this, I totally accept some people don't), give them a diary showing events throughout the day and a record of what's happening.

Sending you strength for tonight

Interestingly he is prescribed an anti histamine (Promethazine) as a PRN for episodes of agression and self injurious behaviour.

Promethazine is prescribed to adults as an anti anxiety drug. Initially, it causes sleep, but that is supposed to wear off!

His psychiatrist said it would act as a mild sedative so yes it could induce sleep. My son has it when he is distressed and hurting himself or others, and it does help calm him down. He is also prescribed regular paracetamol and also takes ibuprofen when doing lots of head hitting as the pain from hurting himself seems to make him hit himself more.

Hi, sorry I hope you don't mind me jumping on your thread, but are you all getting prescriptions from your consultants or GP? Our DS desperately needs something, very aggressive and violent towards his younger brother and extremely hyperactive

Op you have done so much since you posted, huge well done. Asking for help needs to be done sometimes. I hope all goes well for you.

My son had one of these and he really loved it. He's a real sensory seeker and it gave him the input he needed

Just to say, receiving a Direct Payment doesn't mean that you have to do all the admin yourself. We were offered a DP rather than organised respite, so we use our son's DP to purchase overnight respite directly from a local provider. The only admin is payment of invoices. Yes we probably get less hours in total than if we contracted directly with individuals but it actually suits our son's development better for him to go regularly to a comipletely different place/home.

I can't remember if pp have advised this already, but if not, ask for a carer's assessment for yourself; and if you have other DC, ask for there to be a holistic whole family assessment, to look at the effects on the siblings, as well as you. Any siblings are likely to be acting as carers, if you are ever not in the room?

If you drive, and haven't done so already, you could apply for a blue badge?

If you apply for DLA, and DD gets mobility at the highest rate (due to her severe behaviour problems), then you could get a Motability car, if you can drive, but don't have a car? Servicing, tyres and roadside breakdown are all free with the car, all you have to pay for is the petrol. Most road tolls like the Dartford crossing and M6 toll are free (although there is a £10 fee for the card)

If you get a blue badge, DD is exempt from the congestion charge, except for a fee of £10 per year.