I feel like the life is being sucked out of me

[Merryoldgoat]

My youngest child is autistic, non verbal and has been unwell on and off since September.

I work, DH works, and I’ve barely slept more than 5 hours a night for ages. I was up until 4am, then he finally fell asleep on me so I had a very unsatisfactory 3.5 hours’ sleep.

Went to bed 30 mins ago and he’s awake crying and coughing again.

He was absolutely bloody fine when I put him down at 8. He didn’t cough once until my head hit the pillow. DH is up with him but DH is ill so the pair of them are just coughing constantly.

I just want to cry. In fact I am. I feel like all I do is cry these days. My life is a fucking shit show.

So is mine,my sons severely autistic and non verbal, spend every day at home as its impossible to go anywhere with him,no help or support, im severely depressed wonder what's the actual point of it all

@That80sgirl

its so hard isn’t it?

I’ve has some sleep but my son didn’t go down until 4 and was up at 8.30.

I’m just exhausted.

I look awful - I’m fat, tired, grey, spotty. I am in a permanently bad mood. I can’t see happiness in my future.

I hear you OP - I have two autistic teens at home (one housebound) and a third in supported living.

Sleep (when you can finally get some) will help massively, so I'd prioritise getting some temporary help so you can try to get some proper rest.

It's also so hard to actually rest when you have to sleep with one ear open and spring back into action, so I'd try to find a way to make sure DH (or whoever can help give you a break) can make sure you're not disturbed (which can obviously be challenging if DC needs you specifically - it's exhausting!).

Have you had a needs assessment under the Care Act from your local council? Does DC have a social worker you can speak to for suggestions/support/respite?

Even if you can't get respite right now, knowing there is some sort of break or support planned for the future might help psychologically to keep you going when you're surviving on minimal sleep (which understandably makes everything look far bleaker).

Thank you for your reply @LonginesPrime

i actually have two sons with ASD but older son is much more able.

No social care - I think there are lots of things I need to look at as never had a care assessment.

My house is chaos and I just have no energy to tackle it but I finish work tomorrow and PIL will have the boys on Wednesday so I’m going to sleep ALL DAY.

Just trying to shake the tearful feeling is impossible when so tired.

Oh. And I’m peri so that’s not assisting.

It’s going to be better when the weather is better and they’re less sick.

Ive been working for 20 years and I cried at my manager for the first time the other week I felt so broken.

Can you get HRT, if you are not already on it? For me it took away the bleak awful feelings, and also, when I did sleep, makes it feel refreshing.

all big hugs to you, hope things pick up soon

I’m not sure - I’d have to talk to the GP as I have high blood pressure which is hard to control. I have zero knowledge of any contraindications.

And thank you @GreenLeavesRustling

i really appreciate it.

I’ve given the kitchen a good clean and got stuck into the laundry whilst little bit creates havoc everywhere else.

And to make me feel guilty for moaning about him he’s sitting slowly pointing to animals and naming them.

Maube I need my antidepressants again.

Definitely apply for a care assessment ASAP- disability social workers can be a bit hit and miss but when you get a good one, they can be massively helpful and supportive. And they can do all the paperwork so the assessment doesn't have to be an extra admin burden on you.

You're also entitled to a carer assessment for your needs as a carer, which might end up getting you some help with finding time for yourself or help with house stuff, etc.

Once you're known to the council's disability/social care team, there's also often useful signposting to other charities or groups that might be able to help.

It also might be worth checking with CAMHS if there are any support groups for parent carers.

And also I would check if you have a carer's centre in your area and join their mailing list - we have one that does online coffee mornings, and while I hardly ever get to attend them, just getting the emails and knowing there are other people going through similar struggles to me helps me to feel a bit less isolated.

You may have done this already, but if not, it's worth applying for DLA or PIP too - it's not means tested and I had no idea it was something we were entitled to when I was still working.

Thank you for taking time to help ❤️

I do get DLA for them both which is helpful and I’m starting a course called ‘Incredible Years’ in Jan which I’m really hoping will be useful.

Money is thankfully not a significant issue for us - DH and I both earn decent money.

the most recent issue is they get sick so frequently and obviously no one else can help them.

They have both had three weeks off school each minimum since September. Juggling that with work has nearly broken both DH and me. Whilst we both have understanding employers, I in particular have work that requires deadline that can’t be moved (payroll, statutory returns, payments) and when we then get the sickness the boys do it’s soul destroying. I’ve had about 6 sick days myself since September - more than the past two years put together.

Writing this has really made me think I need to make some significant changes going forward.

Lots to think about.

That just sounds really really hard.

If you have a decent income, other than getting a care assessment, can you pay for some respite help - and a cleaner if you don’t have one?

I would also go back to your GP for Anti-Ds if they helped last time. It just might help you get the energy to get everything in place.

I needed this thread this morning. Single mum to dd10 with autism. She hates going out so we spend every weekend at home while she plays alone on her iPad. She had a couple of friends she used to play with and talk to on her phone but they have disappeared from her life and have new friends. I could cry, feel so so low.

Thank you @Luredbyapomegranate

I do have a cleaner and that helps. Respite help is less easy as I can’t find anyone locally for the right hours. And I really need the help when he’s ill.

When they’re both well and settled we are all happy and whilst it can be hard, things are manageable.

It’s been a particularly hard few months - I’m really hoping January brings a slightly less stressful time.

@lollipoprainbow

im so sorry. It’s so unfair. I used to be so chilled out and I’m just a ball of anxiety and misery now.

Are there any interests your daughter would like to pursue? It’s so hard to get any motivation into my older boy so he’s always here too which adds to the stress.

Same here only single parent, dd 11 asd not in school as no suitable school places so at home with me at all times

I was in a similar place I have 4 with asd. Both me and dh have given up work for the next few years as we were in danger of getting seriously Ill and couldn’t meet their needs unless we are both full time at home . It’s been so hard

@SpinningFloppa

You are being so failed - how can that be acceptable?

@Basketofchocolates

You must be absolutely exhausted. Are your children happier with you both home?

I’m not entirely sure they’ve processed it but I feel better just having the help I need the juggling act previously was too much to cope with . It’s not ideal though and we only plan a couple of years just to be able to function again while they are so young