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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:
Zoorhik · 26/03/2021 19:22

@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.
Has anything changed to his usual routine? Are there any new sounds in the house, could be different white noise sounds? Anything different in his environment eg: smells, furniture that’s been moved? Is he hyper sensitive to light, touch? Check all these things. It must be so hard for you OP, you must be at your wits end.
FigureItOutNow · 26/03/2021 19:25

Came on to say if he he doesn’t already have noise cancelling headphones try them, my nephew had a couple of similar episodes and my sister figured out that the headphones helped him. No idea why but presume some kind of auditory issue. She found he was waking at about the same time every night and put blackout blinds in his room, white noise on all night and noise cancelling headphones all day. She thinks the tears were triggered by something either auditory or visual that was leading him to have poor sleep and then causing him to be tired and tearful/frustrated all day.
Sorry you’re going through this

OverTheRainbow88 · 26/03/2021 19:27

Has he been going to school throughout lockdown? Could having all the other students back be causing him distress as it’s a major change in routine and much louder?

I really feel for you, hopefully he will calm down soon. Do you have a partner to help?

Original poster
NotEver0 · 26/03/2021 19:29

Nothing has changed for him i can think of,hes been attending hub and now his usual class albeit for normal hours,its a specialist school. Hes a patient of camhs,however over the years due to him being completely non verbal and unable to communicate in any form other than pulling me they havent been very helpful, i guess to them hes not got enough of anything to work with.mentally hes been assessed as a baby,depression wouldnt fit on his radar.
Its so hard,unbelievably hard.hes cried himself to sleep and will waken in a few hours only for it to go on again unless he snaps out of it.

OP posts:
LizziesTwin · 26/03/2021 19:33

Could he have growing pains in his legs? Trying to think of what might upset a 10 year old.

OverTheRainbow88 · 26/03/2021 19:33

Could you try lots of different picture options of things that could be bothering him to see if he responds to any

Or a story board?

Are you able to go to bed now as well and bank some sleep?

LizziesTwin · 26/03/2021 19:34

growing pains

SmashedAvocado · 26/03/2021 19:38

Did the crying start at home or at school OP? Has he a new bag/coat/bedding or whatever and the colour/shape is distressing him? Did he try a different food? Can you think back to what happened directly before he starting crying? How is his toileting, not constipated?

Hugs to both of you Flowers.

Blacktothepink · 26/03/2021 19:38

It’s so hard Flowers op

OrangeSamphire · 26/03/2021 19:44

Hey there OP, I have one autistic child and one who is learning disabled and non verbal. And these are the things I’d want to check/rule out:

  • infection of any kind. Has he had urine and blood test to check for signs of infection?
  • seizures. Does he have epilepsy?

Otherwise I would be thinking extended meltdown/shutdown and trying to reduce stimulation and demand as much as possible, encourage use of sensory soothing aids and safe space and take it day by day.

Joeblack066 · 26/03/2021 19:45

Huge hugs to you and your boy OP. Could he be hitting puberty? My nephew suffered terribly with the hormonal changes.

cansu · 26/03/2021 19:46

As this isn't common behaviour there is every chance he is ill or in pain. I think you should insist he is checked over and is given more pain relief to see if this helps. It simply isn't acceptable for them to fob you off and leave him in this state. He needs his teeth checking. He could have an ear infection or anything really. I am so sorry. I have autistic children and the inability to ask them what is wrong and how you can help them in heart breaking.

Sayamino · 26/03/2021 19:51

Ear infection, growing pains, something has frightened him so he’s outside of his comfort zone? Could you go to bed when he does and sleep whilst he’s asleep?

Hugs to you, hang in there, it may just be a little phase and hopefully it’s nothing serious, it may pass very soon x

nothingcanhurtmewithmyeyesshut · 26/03/2021 19:51

I came on to say the same thing about scraping his fingers and toes with your nails to see if there's a hair round them. Ingrowing toenail? Toothache?

Watchingthetelly · 26/03/2021 19:55

Jesus OP, life definitely shouldn’t have to be so hard. I really hope your boy feels better very soon. Flowers x

KILNAMATRA · 26/03/2021 20:02

I don’t know any thing about what you’re going through,💐 but an adult could be medicated, is it possible for him? Even just so ye could all get sleep? Everything’s worse with disturbed sleep...

correctprocedure · 26/03/2021 20:02

Sending big hugs. You sound like the most amazing mum in the world and I really hope it passes soon.

shouldistop · 26/03/2021 20:07

I'm so sorry op, that sounds incredibly hard.

With Calpol to fully work you need to give more than one dose so maybe try the full dosage for a day or 2 incase it is pain that's causing it?

I don't have any other suggestions, I've no experience at all.

I think there's an SN board here though, there may be some knowledgeable posters there.

Thanks I'm so sorry you and your son are going through this.

OhWhyNot · 26/03/2021 20:14

Oh op no life shouldn’t be so difficult really do feel for your ds and for all x

I really hope you find the answer very soon I know here you can get some great and often helpful support xxx

VestaTilley · 26/03/2021 20:14

I’m so, so sorry, OP. That sounds so very hard. I hope you have good support.

Could it be something you can’t see? Toothache? Threadworms maybe? Or an ear infection? The poor boy; you must both be going distracted.

LenaBlack · 26/03/2021 20:16

It sounds absolutely awful OP.
Can he be given some medication to calm him down and make him sleep longer so you can sleep too?

Original poster
NotEver0 · 26/03/2021 20:43

How crap am i,i havent even considered a ear,urine infection or insisted on his bloods to be checked or insistence of an antibiotic.i have been driven to distraction with his crying,driven to such sadness.i need to be better at this.

OP posts:
MrsMyreton · 26/03/2021 20:46

OP you are absolutely not a crap parent. This sounds unbelievably hard. I have no advice but I'm sending you and your son love Thanks

Longtalljosie · 26/03/2021 20:49

No love - you are doing just fine, but you are also human and exhausted. You asked on here to check there was nothing the MN hive mind could come up with - that was your parenting decision. If a suggestion on here is the right one it’ll be because you sought it out for your boy 💐

Watchingthetelly · 26/03/2021 20:50

OP you are not crap at all!! You are doing your best in difficult circumstances and you took him to A&E to get checked. I don’t think I’d cope anywhere near as well as you. You are 100% not crap. I feel very strongly about this!x