I can't do it anymore

[Confusdworriedmum]

I can not do this anymore. I love my DS but I can't look after him anymore. The thought of another week with tantrums, meltdowns, lack of sleep is too much. DS wants to be outside constantly which would be fine except he runs off or can't cope if it's too busy. He loves swimming but that's only an hour. Yesterday I took him swimming, to the park for an hour and on a walk in the afternoon. He didn't go to sleep until nearly 11 and he's up now
He's only 5 but his social, emotional and cognitive development is more like a child half his age. He's non verbal and still in nappies. He takes his nappy off at night and wees and poos all over his floor and bed. I just can't face cleaning his room again.
I don't know how parents on here do it. You all seem to cope so well while I feel done in. There is no-one who can help me. It's all on me and it's too much. I honestly feel like walking out of the house and never coming home.
I'm really sensitive at the moment because it's my mum's birthday on Saturday but she died in February. I was so close to my mum and she was a brilliant mum. She was mostly a SAHM too but she loved it and was never as snappy and grumpy as me. I wish I was more like her m

It is so so hard parenting a child with additional needs and you are doing a brilliant job. Add in the sleep deprivation and the fact that you are grieving and it’s nothing short of a miracle that you’ve managed to take your DS swimming and out for walks. Give yourself a bit of a break, this is such challenging stuff and you are doing your best.
you sound to me like a brilliant, loving mum who desperately needs a break. I know it’s very hard to get one though! Is there a Dad around? Or anyone who could give you even a short break? Is DS usually in school and does he have an EHCP? I’m just wondering if there’s anyone who supports him in term time who could help you in the holidays. Or any other childcare? A friend?
I am so sorry to hear about your mum, she sounds so lovely. I expect that this feels so much harder without her support. There’s no easy solution to that, but please don’t beat yourself up for being grumpy and snappy sometimes, this stuff is literally almost impossible some days and I will bet that you are wonderful with him a lot of the time too. This is a bad moment because you’re exhausted. Can you get yourself a coffee, a shower and then you might feel more ready to face the day?
Big hugs to you OP. Here with you in solidarity. 💪 🌺

It won’t help for now, but for the future, have you had social care assessments? And have you looked at your local short breaks offer?

If DS likes swimming and you have a garden, would a paddling pool help?

Does DS like baths?

For running off, do you have reins? Can you work out where locally is quieter first thing - often that is the quietest time?

He does normally attend school part time and he has a 1:1: as part of his EHCP which is being updated at the moment. No help from anyone in the holidays though. Most of our friends/family work full time anyway.
Dad is around (we're not together) but contact is very sporadic. Been separated two months and he's seen DS twice and one of those was with me there. So it's not like he regularly takes DS so I can have a break.
Social care assessment hadn't been done but I don't think he'd cope with a break. He does love anything to do with water, he hates getting out of the bath and loves the paddling pool but still prefers swimming..
I know I just have to carry on but it's so hard. I just want a decent night sleep.

Request social care assessments. On their website, Contact has model letters you can use. This doesn’t have to be DS going away for a break. It could be support at home or someone to take DS swimming more.

Has DS had a sensory OT assessment and does his EHCP include ongoing sensory OT support?

Why is DS only attending school part time? Is other provision being made the rest of the time so that he still receives a suitable full-time education?

you could consider trying melatonin for DS if you haven’t already? Your GP might be prepared to prescribe it, particularly if you tell them that you are literally on your knees and feel unable to continue on such little sleep.

Melatonin literally saved me from similar levels of sleep deprivation with my daughter, it’s like torture night after night. Then somehow you have to carry on the next day, it’s relentless. Our GP prescribed melatonin for her and it was honestly life changing- for her as well as me. The first night taking it she slept for the first time in months, I couldn’t believe how well it worked. I realise it isn’t easy to get a GP appointment, but presumably he’s on their radar?

@Confusdworriedmum

Hi there ,

Hope your feeling a bit better today . The summer holidays are extremely tough when ur dc has high needs . I personally know as am in the same boat. Its like a carousel of constant demands & caring.

With me in feel I have nothing more to give .

But your a real tough cookie, be proud of yourself x

Op I have a daughter similar to your son, also 5 ( well in October) developmentally delayed in nappy’s and non verbal. When I tell you I’ve found it hard this six weeks holiday I can’t think of any other time in my life I found it this hard and my hope just getting less and less by the day, and I went through ivf for years and years for my child and thought that was the darkest years of my life but awful to say it was nothing compared to this now. We love our children of course we do but nothing in this world prepared me for parenting an autistic child. She seems to go through phases with behaviour, some weeks can be amazing, she’ll have the odd off days but she seems to cope better, then months where going out in a nightmare staying home is a nightmare, constant meltdowns, no support either, I’m so sorry about your mom too that on top of it must be heart breaking I really feel for you. I’ve not got any advice and I won’t say have you asked the gp/sen team because I’ve done all the same and their absolute rubbish tbh. My daughter is also violent, biting hitting and has started to hit the walls the past few weeks, I feel like I’m cracking up, I also remember she’s having a hard time too and the world is just not equipped for autistics. She also doesn’t sleep and I don’t know how I do it either but I do, I’ve gone from a coffee in the morning to multiple a day where as before if I had a coffee past 3pm I’d be finding it hard to sleep as soon as my daughter is down for the night I’m out regardless of how many 😂 I find the cleaning and lack of sleep relentless and I try just get a rest whenever I can. Normally ends up in my daughter pulling me off the sofa every 5 seconds. It’s hard work very hard, and I don’t know how any of us do it x

For those ASD kids not sleeping , have you tried magnesium? I say this because when I did , she collapsed in front of me and didn't wake up till 8 am. Sleep is the only respite I get and without it id probably have lost it long ago. Hats off to you

You posted this a while ago op, how are you now?

Its just me and dd(6) who is autistic

She also LOVES water and swimming.

First things first - decide once and for all where you stand with his dad. If he isnt going to be involved, you need to have that clear in your head. Certainty is your friend here. Even if you have no support system, like me, its better to be certain of what youre facing than living with hope that your ex will give you a break.

I am so sorry that you lost your mum. It must be so painful but I can guarantee that she had days that were tough too. And you are not alone in feeling this way.

Could you make a list? Check off things that need to be done for ds

Did you get a short breaks 4 me grant? They can be used for 1 to 1 swimming lessons, giving you 30 mins of phone time while someone else is responsible for him. Its nothing really but can help.

Chase the disability social worker (i will also chase mine) to get your first assessment done. Say you need it soon as he needs the support.

Have you applied for the dla properly, under SMI? And the mobility? I think they get the mobility element from 5 years old.

That will take ages but it will be money to pay for a baby sitter, even once a month.

Then routine is your friend. Dont feel bad if you cant but if you can 'clock in' at 5am and then 'clock off' at 6pm, while hes in bed and you're waiting for him to fall asleep (next to you in your bed, if its easier), and go on your phone or read, that will hopefully help

Are you working? If not, use the school time to nap. Make an effort to nap each day so youre getting some rest, dont worry about anything else.

You will be okay, op.

I'm one and done for this reason - its not easy but i can make it through each day with both of us coming out okay

One day at a time, you've got this

But You're completely valid in your feelings, snd you're doing great. I bet that your boy feels really safe with you ❤️

Sorry for the LONG post 😅

HRM DLA can be awarded from 3. LRM from 5.

What short breaks funding can be used for varies depending on where you live.

@Confusdworriedmum

HI , how are you ? Noticed you posted this early in summer holidays break , is your DS back to school now ?
Hope your doing ok x