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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

129 replies

NotEver0 · 26/03/2021 14:50

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.

OP posts:
Original poster
NotEver0 · 28/03/2021 00:26

Thanks for the kind well wishes,i hope they somehow reach my boy and make him better, and back to his happier self.ill never take his incessant giggling for granted again,id have that over his poor tears each and every time.

OP posts:
nothingcanhurtmewithmyeyesshut · 28/03/2021 18:24

Can you dose him up with painkillers and see if it makes a difference? If it doesn't work then at least you can rule out pain of some kind.

Original poster
NotEver0 · 30/03/2021 17:53

My child is still crying,no one can get to the bottom of it.he cant go school,he wont stop crying hes had observations theres nothing medically thry can see.....im at my wits end help anyone

OP posts:
MayYouLiveInInterestingTimes · 30/03/2021 18:03

Is he still not sleeping well? It may sound minimising but if that’s still the case plain ol’ overtired is part of it. You must be at your wits end op, are you getting any break?

Beenaroundnow · 30/03/2021 18:44

Can you ask gp or A&E to give him a sedative? Anything to break the continuity of it.
Stupid question but is he actually distressed or stimming on the noise?
Piriton? Gaviscon? Thorough top to toe search for any spots, hairs round toes...
Favourite food?

OhWhyNot · 30/03/2021 19:26

How distressing feel so sad for you all

I think you have to go back to a&e he must have totally worn himself out

And for you too

braceletsandbangles · 30/03/2021 19:32

Oh you poor thing. How awful!

I have no advice from any experience. I so wish I did.

All I can suggest is that you go back to A&E and refuse to leave. You are in danger now Sweetie. You must feel as though you're hanging on with your fingernails to any semblance of sanity Daffodil

Hopefully my post will at least bump the thread so others with experience can advise you.

Notquitesureaboutthis · 30/03/2021 19:34

Bless you both OP Sad

As PP said could a sedative help? He must be exhausted, as are you.

Does he calm when he's eating?

Original poster
NotEver0 · 30/03/2021 19:41

I phoned his dr yesterday who said i dont know what else to say,she said if theres nothing obvious and his observations are fine ill just have to wait it out and she couldn't offer anything else.harsh but in a way true too?hospital said they dont know he got a course of antibiotics four days ago,nearly finished now,no difference. Ive checked every inch of him,no easy feat as he doesn't want me to hold him or be near him.its all so exhausting and hard,i can't even take him out as he runs or lies down when harnessed,he refuses his wheelchair and a pram for his age costs upwards of £1000 and even then they are preorder from August. Ive lost every bid on Ebay and scoured gumtree etc.he screams in the car,its so distracting its likely id crash.my other kids are traumatised with the noise and seeing me so emotionally spent.

OP posts:
Original poster
NotEver0 · 30/03/2021 19:43

God help us

OP posts:
Bobbybobbins · 30/03/2021 19:46

Op I'm so sorry that things are so tough for you. I have two DS with learning difficulties and my 5 year old is non verbal and cries a lot. I am dreading when he is older and bigger. I remember one day driving him around all day as whenever we stopped he'd start screaming again.

Wellwoman2021 · 30/03/2021 19:48

My heart hurts for you and your son. I can hear your desperation and helplessness in your words.

Original poster
NotEver0 · 30/03/2021 19:54

@Bobbybobbins i crashed my car last time he was like this trying to calm him down,we werent hurt but i was badly shook up and fearful of driving for months later.im sorry you have these worries.

OP posts:
Original poster
NotEver0 · 30/03/2021 19:56

@Notquitesureaboutthis the doctors wont prescribe anything like that,ive asked.think because of his age too.he is a fussy eater and now with his distress and non stop running and pacing im running around bowl in hand trying to feed him.

OP posts:
OhWhyNot · 30/03/2021 19:58

I was going to say social services for some support you desperately need this. I am not sure what support there is at present

I think like others on here it’s really sad to read what you are all going through and feel utterly helpless (and offering advice that might be completely useless)

AmadeustheAlpaca · 30/03/2021 19:59

Hi OP, please take him back to A and E and refuse to leave till something is done, even if you have to have a meltdown in front of the staff. You can't go on like this and even if they can't help your poor son you have got to have some support or anything to give you and your other children a break. Your GP sounds completely useless. You could always try phoning Samaritans and tell them that you are at the end of your tether and they might be able to suggest something practical. Sadly I suspect that they are very busy during lockdown. If you are at the stage where you are worried about acidentally crashing your car you need some additional support ASAP. Can't think of anything else, sounds awful.

diwrnachoflleyn · 30/03/2021 20:00

@OhWhyNot

I was going to say social services for some support you desperately need this. I am not sure what support there is at present

I think like others on here it’s really sad to read what you are all going through and feel utterly helpless (and offering advice that might be completely useless)

Nil or next to it thanks to coronavirus. Sad
diwrnachoflleyn · 30/03/2021 20:01

@AmadeustheAlpaca

Hi OP, please take him back to A and E and refuse to leave till something is done, even if you have to have a meltdown in front of the staff. You can't go on like this and even if they can't help your poor son you have got to have some support or anything to give you and your other children a break. Your GP sounds completely useless. You could always try phoning Samaritans and tell them that you are at the end of your tether and they might be able to suggest something practical. Sadly I suspect that they are very busy during lockdown. If you are at the stage where you are worried about acidentally crashing your car you need some additional support ASAP. Can't think of anything else, sounds awful.
They're apt to send them home if they go to A&E.
OhWhyNot · 30/03/2021 20:04

diwrnachoflleyn

I thought that this might be the case. But NotEver0 is sounding so desperate. How can anyone manage this

MSQuinn · 30/03/2021 20:04

@NotEver0 you have my deepest sympathies. I have two children with autism/adhd. The older of the two is verbal thankfully but his younger sibling is 8, non verbal, learning difficulties and coeliac. We went out for a drive with him the other day and he had a massive meltdown. Inconsolable. It was awful. He did hand us his pecs card for tummy hurt. But we couldn’t get him to calm down. We ended up on a slow drive home with him naked.

Has your son got any other conditions that might have been missed such as adhd? The moving about and lack of concentration caught my attention as both my kids are like that and take meds for their adhd.

Does he have any food issues? Any stomach problems? It took five trips to the GP and only once my husband went and demanded blood tests did they check our son and coeliac was thrown in at the end. Is this crying unusual? It can be really tricky to pinpoint and separate whether it’s physical or whether it’s an environment issue. Big hugs and if you ever want to chat, do PM me.

AwaAnBileYerHeid · 30/03/2021 20:19

I'm sorry you're having such a hard time. If you were to show him a picture of person and asked him to point to where it hurts (if he is hurt), would he be able to do that?

WhiskyIrnBru · 30/03/2021 20:26

Oh OP, this sounds absolutely devastating
I cannot begin to imagine how you're feeling.

Flowers

Could it be constipation? I don't even know what to say. I'm so saddened that there is so little support after they rule out medical issues. It must be exhausting.

misskick · 30/03/2021 20:40

If he has had observations at a&e, have you also taken him to the dentist to rule it out as often tooth ache can come and go. He won't go of his food necessarily. Sounds such a hard time for you op. Really hope things get better for you soon.

RandomUsernameHere · 30/03/2021 20:43

OP I'm so sorry you're going through this. Seeing your child in pain is just the most horrible thing, so I can't imagine how hard this situation must be for you. I hope you get some answers and your son is feeling better soon Thanks

sakura06 · 30/03/2021 20:48

So very sorry for you and your son. This sounds incredibly challenging.

On a separate note, could you start a crowdfunder for the mobility equipment you need to help you both get out or could you get this through the NHS? This website seems helpful (no personal experience of this though): freedomforkids.co.uk/charity-funding-for-special-needs-equipment/charity-funding-for-specialist-pushchairs/?