To think life shouldn't be this hard all the time?

[NotEver0]

My son has severe non verbal Autism,with severe learning disabilities.Hes now been crying for a whole week and we dont know why.By crying i actually mean allday.His doctor was very little help and suggested calming techniques and really couldn't get me off the phone fast enough(because i hadnt of course tried them already!)took him to A&e they couldnt think what it could be and did usual checks,hes been sent home from school as they said hes distressing other kids and wont be comforted.ive gave him calpol in case hes hurting,but its had no effect.Its the most distressing thing ever and highlights by far the cruellest part of his autism,that he cant speak and say whats wrong.
Im so broken today,life is dragging me about on my knees.i keep waking up hoping hes over whatever it is.Last summer he did this for a full month.Hes waking at 2am everyday,sleeping barely 5 hours. Nothing is distracting him from his distress.Hes 10.

You are doing your best.

You recognised that you are human and struggling with a horrible situation and asked for help to try and help the child....that is not a crap parent

I'm afraid I have no ideas but wanted just to say that I'm sure you're doing a brilliant job. It sounds incredibly tough seeing your son so upset and not knowing why.

Does his levels of distress change throughout the day? Wonder if that might help pinpoint something...?

You're doing amazingly op. I can't think straight when either of my children are crying and you've had this for a week now

OP it’s easy to fall into feeling guilty but you really mustn’t.

When you’re in the thick of it, and exhausted, you NEED the support and ideas of other people sometimes. It doesn’t mean you’re crap or that you should have thought of something yourself.

Really you need the better support of the healthcare staff who should have, as a precautionary measure, taken urine sample and possibly bloods too, to check for infection. They may not have seen the need to do this but they should then explain to you why. Also in my experience many healthcare staff don’t have the knowledge or experience to identify what’s going on for people who have learning disabilities, or who are autistic or non verbal.

If your hospital has a LD nursing team or an autism team, ask for their support if you decide to take your child to be seen again.

That’s so hard x

Please don’t be so hard on yourself. You are dealing with such a draining and upsetting situation how can anyone think straight x

I cant help in any form I'm sorry but just want you to know, that despite what you may be feeling, you are an amazing and incredible mum xxx

It is not your job to think of checking urine or bloods etc. It is the Dr's job!!!
Please call the gp back or take your child to A&E again and let them witness your child in distress and ask for the full works of testing, perhaps to try the strongest pain meds you can get to see if it makes any difference.

I feel super stressed when my kids cry and that's for not more than 10 mins at a time and they can talk, I really feel for you both. In the meantime, is there anyone that can give you a break for an hour or 2 a day, form a support bubble? Maybe get yourself some noise cancelling headphones, is there anything that calms your son that you can try? Some new sensory lights or toys that might help?

I hope he is happier ASAP, truly exhausting and heartbreaking for you both

So sorry OP- sounds unbearable. Would a bath with some low lighting help- if he has pain, a bath is often soothing. Of course not if he doesn't like them but could be worth a shot?

For night stress, how is he with sounds? Could he ever listen to story/audiobook? Is there soft music he can listen to, or a white noise machine playing very low? Sorry if he doesn't like noise, just trying to think of anything to distract from his upset.

Definitely check for constipation. It can be very distressing.

What about sensory activities like playing with sand/rice?

Do you have access to a garden? Would he like to plant some seeds or small plants? Or make a pebble arrangement? Getting outside helps with mental and physical illness. Many hospitals are starting to include gardens and I know it might sound silly but it could give him a focus/ownership of something/even just watching you care for the seedlings?

Hi thanks everyone for all the advice im taking it all on board, youve been so kind

Sorry to hear this OP. Hang on in there. This will pass. Could you go to an A and E at a different hospital? They should at least check him more thoroughly to make certain its nothing physical or advise you about pain relief/ what to do. Tell them hes been crying continuously and you cannot cope any longer. Goodluck x

Unfortunately my son cant concentrate on anything ,hes forver on the move,always has been,he wont walk outside as he runs away in the opposite direction of wherever we go.hes not great with noise,but refuses defenders as he cant stand his head being touched.today hes paced furiously not allowing me to comfort or hold him.hes fallen asleep after 30 hours awake,hes not had any melatonin and will be awake soon,im praying hes better when awake.

Sounds incredibly draining and heartbreaking for you:
White noise
Bath
Weighted blanket
Hot water bottle
Car drive
Run together in enclosed place
Max pain relief
Something to suck or chew

I would seek more support from school. It’s all very well saying he’s distressing the other children but they need to help you meet his needs too and they should have lots of strategies up their sleeves.

If he’s safe and knows how to come to you, use the nose cancelling headphones/earplugs yourself to lessen the impact of the crying.

I take my hat off to you OP.

Wishing you strength and sending love. Hope your son feels better soon. What a distressing situation.

I'm wondering about toothache? Would he tolerate a dental xray?

How was your night op?

Possibly unhelpful, could it be toothache?

I'm obviously not non-verbal, but toothache left me wailing and rocking 24/7 for days before the dentist showed mercy on me and gave me an emergency appointment to have the tooth yanked out.

I couldn't even look after my DC, I had to call a relative to care for them while I suffered the agony. The NHS dental system is barbaric.

Toothache is the closest pain to labour and childbirth IME.

Get your DC an appointment asap.

Got him to a&e,we are non the wiser,his pain/unhappiness continued in the same vain today.praying for sleep and a better day

Its not dental ,hes been checked xx

OMG you poor thing. I haven't got an answer or a solution but I wanted to let you know I'm thinking of you, sending very much sympathy and hoping and praying he improves really soon. 💐💐💐

It's so difficult for you and him

Ds2 does talk now but it it isn't really functional communication, a lot of the time - just a constant stream of consciousness. He's not been able to go to school when they've been shut, though. All 200 of their pupils are classed as vulnerable, so it wasn't happening! This has been so distressing for him, though, and he's developed some pretty incessant tics. When he found out that he wouldn't be going back to school, after Christmas, he wailed like a widow for days. His teacher referred him back to camhs and were trialling him with some medication for anxiety. We're a week in and he's being weirdly intense but need to stick it out for a bit longer before we can tell if it's helping the tic noise is already reduced but he's harder to get through to and a bit obsessive and aggressive, at the moment.

I hope things have got better for you and your boy Op. Been thinking of you.