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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:
chalktheblockwithglitterchalk · 30/03/2021 21:20

That's sad poor lad. I have an 11 year old non verbal dd with autism. Thankfully she doesn't get upset a lot but I find letting her watch some
Netflix or just drawing and cutting out pictures calms her down.
Also she is very calm around nature so a trip to the local woods to see the flowers and trees is also a great help.

irie · 30/03/2021 21:23

@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.
This. You are so strong! I can't believe doctors or a&e haven't helped more, I'd demand a sedative to help him calm down til he can sleep and maybe feel better. So much love to you xx
Original poster
NotEver0 · 30/03/2021 21:23

He has no known stomach gastric problems, has been peeing and pooing normally.unfortunately his learning disabilities are do severe also that he has mental function of a six month old so completely unable to point out area of pain or communicate in form.

OP posts:
chalktheblockwithglitterchalk · 30/03/2021 21:27

Our local children's services has a special needs team. Yours probably does too, can you contact them for help?
Does his school has a family liaison worker? They might also be able to help.
Can you try getting him some sensory equipment like a weighted blanket or a ball that lights up? Even headphones?
If it's sensory overload related it might help him to sit in the dark with you for a bit.

Frezia · 30/03/2021 23:14

I've been thinking of you @NotEver0 I wish there was something I could do to help. You are so strong, even if you don't feel that way. I hope your little boy feels better ASAP and that you can get some relief.

HandyHarry · 31/03/2021 06:23

I'm so sorry you are all dealing with this Thanks

GladysTheGroovyMule · 31/03/2021 06:47

I hope you find out the cause of your son’s distress soon I can’t begin to imagine how distressing this is for both of you.

colouringindoors · 01/04/2021 00:12

Thinking of you OP. Really hope things improve soon 💐

Original poster
NotEver0 · 01/04/2021 01:05

Just an update,his crying has eased off to just a few distressed bouts today as opposed to crying all day.im hoping thats the beginning of the end of this chapter.we are all so drained.ive been off my antidepressants for three months now but reached for a spare blister pack yesterday to help cope and take the edge off.

OP posts:
Princessbanana · 01/04/2021 06:03

That’s great Op, I hope you are all fast asleep as I am writing this💕

InvincibleInvisibility · 01/04/2021 06:29

You are a fantastic mum and its no wonder you dont think of everything when hes crying. It freezes your brain and you must be completely drained.

Maybe write a checklist of things to check for next time? (Though obviously I hope there isn't a next time).

Is there any history of migraine in the family? Both my sons have them and before we got preventive treatment, they'd be in pain for weeks and even months for my SN son.

Original poster
NotEver0 · 01/04/2021 16:43

Hi i do suffer from migraines but ive kept him on calpol and ibuprofen all week and it didnt shift it.hes better again today,keeps hiding away lying in his bed,his crying has continued but to a lesser degree and longer times in between, im also seeing glimpses of his sweet smile again and it fills my heart with such protective love for him.

OP posts:
Original poster
NotEver0 · 01/04/2021 16:44

Thank you @Princessbanana for thinking of us this morning xx

OP posts:
colouringindoors · 01/04/2021 17:22

Oh I'm so pleased to hear he's doing better, for you and for him. These kids, bless 'em...

LadyOfLittleLeisure · 01/04/2021 17:30

My youngest (also severe non verbal autism and learning disabilities) does this periodically, sometimes we almost get to breaking point, it's the most awful thing. The only advice I have is if you have a partner to get them to take emergency dependants leave immediately and to take turns caring as it is an extremely stressful and demanding situation. We have never worked out what causes it either :(

InvincibleInvisibility · 01/04/2021 20:11

Before preventive treatment neither of my sons were calmed with calpol or ibuprofen when having a migraine. My son with AdHD would just lie of the floor bent in 2 crying his eyes out (started as abdominal migraine). His pain actually went on for about 10 months before we finally got a diagnosis.

I don't know how you'd diagnose it if he's non verbal though as there's no tests for migraine.

RandomUsernameHere · 01/04/2021 21:23

So glad to hear he is feeling a bit better and hope things continue to improve

seashells11 · 01/04/2021 22:02

So pleased he seems to have perked up a bit OP. x

Woolybear · 01/04/2021 22:11

You’re a brilliant mum OP. Sounds like you could do with some respite, do you have a social worker? Also ask for O.T. assessment, they should be able to advise you on strategies to help your son cope.
Hopefully he hasn’t got any underlying illness, it is a worry with kids who are non verbal. Lots of love you 💗💗

MsScoot · 01/04/2021 23:28

OP, I just read this and really hope it gets better for you. My heart goes out to you both. Is there anyone who could watch him for a few hours so that you can get a break ?

OhWhyNot · 02/04/2021 00:51

I’m so pleased to hear that your ds is starting to smilie again. I truly hope whatever is upsetting him stops. To keep together through this for your other children too is incredible x I so hope that you can for yourself get some support in place very soon

Original poster
NotEver0 · 02/04/2021 00:54

My son does have a social disability worker,only been allocated very recently, however ive been told due to covid any real support is unlikely.family unfortunately cant and wont help as they say they cant handle him.hes full on without the crying,never sits,climbs everything, scratches bites runs away stims non stop,still in nappies .hes also so loving,loves giving and receiving kisses and hugs,loves being told hes loved despite not understanding or being able to even begin to say it back,hes never said a word.hes my everything and also my greatest sadness.

OP posts:
Apileofballyhoo · 02/04/2021 01:27

You poor thing, OP. I can't imagine. Your love shines through your words and I'm so glad it's obvious he loves you too.

Can you ask for stronger pain killers in case it's migraines? I had abdominal migraines as a young child and had ponstan for them. I don't really remember but apparently I'd go white with the pain. I don't think paracetamol or aspirin touched them. Back when aspirin was allowed for children!

InvincibleInvisibility · 02/04/2021 05:25

I wish I could give you a hug OP.

It sounds so difficult yet both of you love each other deeply.

How are your migraines treated? Do you see a neurologist? It was my neurologist who diagnosed DS1 with abdominal migraine after 10 months of other tests (which all came back negative). 4 weeks after starting the preventive treatment and he was a totally different child. He's now 9 and only has 1 a month compared to weekly. And my 6 year old had to start treatment last year which has reduced the frequency of his migraines too.

Sorry to be so fixated on mingraines, its just the first thing that sprung to mind for crying without a visible explanation.

Hope tonight isnt too bad.

Ephe17 · 02/04/2021 08:08

Could you have his Vitamin D levels checked or just start supplementing with Vitamin D?

Core symptoms of autism improved after vitamin D supplementation
pubmed.ncbi.nlm.nih.gov/25511123/