To be feeling really awfully sorry for myself?

[Thehonestbadger]

Today I’m in bed feeling hideous after not sleeping at all for days and not being able to eat for intense nausea, an ongoing issue since pregnancy I’ve been waiting on gastro referral for months to address. My lovely mum is watching the kids but struggling immensely and I know I have to take over again soon and I just want to sob. Spent all night feeling like I couldn’t breathe, wretching and crying.

I have a 14m gap between my two kids (almost 3 and 20 months) and eldest turned out to be rather severely autistic which we hadn’t a clue about until shortly before youngest was born.

Life is hard and unenjoyable. I give 110% 24/7 and it’s never enough I’m still constantly failing everyone. Hubby has retreated into his career which pays the bills and is every bit as miserable as me, whilst I have no friends, hobbies, career, social life, relationship or time to do anything for me. I lost everything to being a mum and gained very little in return. My eldest can’t speak and is very physically abusive towards me probably due to frustration, his understanding of the world is limited and he can’t follow even basic instructions they go straight over his head. He’s not aggressive intentionally but lashes out when he can’t regulate his emotions. He is a massive danger to his younger sibling and himself as puts everything in his mouth and has no concept of danger or risk.

We daren’t travel with them, eat out or do anything really. I can’t manage them alone so can’t take them out, they trash my house 24/7. Youngest doesn’t understand why eldest behaves like he does so copies a lot of his behaviours. I must scream ‘NO GET DOWN’ 5 million times a day because they’re both bouncing on the dining table or windowsills (eldest climbs everything and youngest copies) I’m an awful angry shouting mum just scrambling to meet basic needs.

The appointments, paperwork and admin that come with eldest are just hideous. I mean it’s completely relentless! DLA, CARERS, EHCP, SLT, EdPsych, Peads…. The list goes on and all of them genuinely think I have nothing else going on in my life than DS. They ring on withheld numbers at random times without notice and expect me to be able to have an hour long conversation then have the audacity to complain about ‘background noise’ and ask me to go somewhere quiet (leave the kids unsupervised) then when I explain they say things like ‘well we can’t help you if we can’t hear you’ and all of them witter on about how DS needs ‘constant 1:1 to ensure his safety’ and completely ignore any and all protests from me pointing out he had a younger sibling who I can’t make not exist.

DLA/EHCP have both ended up over 100 pages of forms/evidence/statements/reports all done by me in non existent spare time and take literally 3-4 months to process whilst we are left to struggle. We even had to move house before Christmas as finances were dire and that’s been endless stress all around. Our family and friends, with the exception of my mum, are completely useless and offer no practical support. Whilst I get they aren’t their kids we have the kind of family who would absoloutley expect support from us if the tables were turned or they needed help.

ITS JUST SHIT!

Honestly I love the kids I do but if I could go back I’d not have them, certainly not as close together and probably not my DS at all tbh because the worry and anxiety over what his life will look like in the future and when we aren’t here keeps me up and night and has landed me with a significant eating disorder and hideous mental health.

I can’t even get medicated as GP listened to me and said I wasn’t depressed, I was having a perfectly normal emotional reaction to a very upsetting and basically completely situation.

I just wish I could escape tbh.

Are you pregnant still or is this from previous pregnancy, I'm confused?

On my goodness. How torturous gorvsll of yiu. Are there any residential schools or facilities available thst your son could go to? I.know someone who works in a school where pupils stay over a few nights a week. I understand the frustration about people calling on withheld numbers- clearly they don't want u to be able to contact back. Ur mom sounds ace. Hand hold.

This sounds like utter hell OP. I'm so sorry that this is your life. It certainly isn't what you expected/hoped for when you tried for kids I'm sure. It sounds like a lot for anyone to bear.

The thing that screams out at me from your posts is that YOU need a break, you need some respite. No help from family/friends, fine, that's okay, not their job. But fortunately you're not a single mum so can you and DH find a way for you both to get some time alone out of the house every couple of weeks? Even an hour? Or one of you take the youngest, while the other cares for the oldest? I'm imagining a bit of time alone with the baby probably feels like a relaxing break compared to the two of them together.

Are there services that provide respite for parents, or childcare/nurseries that can care for kids with this level of problem? I'd love to say you can't keep going like this but sadly I imagine you can and may have no choice, so given the hard road ahead you've definitely got to start finding a way to get a bit of oxygen to yourself if you're able to so you can function.

Hubby has retreated into his career which pays the bills and is every bit as miserable as me, whilst I have no friends, hobbies, career, social life, relationship or time to do anything for me.

Ok, so what does this mean? Some of his time not at work needs to be to give you a break. He should be taking them for at least part of the weekend/whenever his days off are.

Not necessarily.

We're not allowed to give our mobile number out for safety reasons. Clients might then try contact us outside of sessions/hours (which isn't safe), which ensures they contact us via monitored channels (shared email inbox). They can ring or email the office and we will contact them back asap but giving clients/patients our own direct number is a no-go. I always send an SMS out to people who haven't got a planned call though to ensure they know I'm ringing, then ring, and ask them to get in touch if I miss them so I can call at a more convenient time.

@Hypofeticalyspeekin

I’m not pregnant. Gastro issues are just a hang over since then. I never recovered from it tbh

Can you make one room in your house completely safe for your DS? A bedroom for example with just a floor-level bed and soft or inflatable toys (like gym balls) and a baby gate on the door.

That way at least you could sit outside the baby gate for 30 mins with cup of tea or your lunch. You could also use it when he is lashing out.

@2reefsin30knots
we have safe bedrooms for both of them the issue is that DS can climb from the floor up onto the windowsill using the radiator directly bellow it and then he is at risk of falling.

DS is also massively triggered by DD crying and she throws a massive tantrum if I try to stop her doing anything she is obsessed with DS who is less than a fan of her

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DS.

Home Start might be able to help you too.

Has DS had an a home OT assessment looking at making the home as safe as possible? Things like a Safe Space bed or similar would help.

@JustKeepBuilding

This was mentioned to me the other day by the woman about the EHCP but she said at his age it wouldn’t be likely they’d do much tbh and it would require a social services referral

Social care assessments will require a social services referral, but it’s not a bad thing. The disabled children’s team can provide support even at DS’s age.

An OT assessment doesn’t require a social services assessment and they could help too.

Why isn't the 3yo in nursery ? He'll get 30 hrs pw soon and it will give you a break. Could you use his DLA to put him in a few times a week. My son is 3 and ASC and honestly nursery is my lifesaver

I still think it would be worth trying to make a room totally safe so you can at least take a breather without having to intervene in anything. Kitted out with some sensory gear it would probably help your DS too.

Some kind of perspex window cover you can fit to the wall to make it impossible to stand on the sill? Radiator removed? You might have to be inventive and put some money towards it, but I think it would be worth it.

Maybe you could find a charity that would help fund a safe-space bed- or put the DLA towards it.

@CinnamonElephant
He does actually go to nursery 3 mornings a week but the only nursery that was set up go manage him safely and we felt confident leaving him in is about 40 minutes drive from our house which means I spend the majority of his session driving with DD. They say he can’t do more as cant really handle more, we initially had him in 2 full days as I tried to go back to work Pt but I was getting called for him having meltdowns very frequently. I ended up having to leave work so until DLA and care get approved we don’t actually qualify for the 30 hours funding and even then we don’t get it till may as he’s not actually 3 yet, nearly though.

It’s a proper stretch financially. We put DD in nursery 2 sessions a week also to allow me to be 1:1 with eldest so he can access things like soft play and other usual child activities where he needs my full attention and just from that our childcare is more per month than our mortgage and since I had to leave work we don’t get tax free childcare anymore either. It just sucks.

Whilst that might sound like a decent amount of nursery it really isn’t. I still spend 2/3 of the week with both of them trying to manage them both at the same time and the other 1/3 I’m just driving around or at Alta/activities with DS which is hard in itself as he requires a lot of physical care and despite being 2 (almost 3) Is 107cm and 21kg he wears 5-6 year clothes

If you can’t get a SafeSpace funded via OT, NewLife can help fund SafeSpaces. They provide emergency loans too.

Investigate whether your LA has specialist nursery placements that DC can attend whilst going through the EHCP process. Some do. Is the nursery receiving early years inclusion funding?

I had help from HomeStart when my youngest was born. I think the school referred us. A lady came round and spent time with my eldest so I could concentrate on baby and anything needing done. Granted my ds didn't display as challenging behaviour but I'm sure they have volunteers with ASD experience. OR if you preferred, they could spend time with your dd?

@Thehonestbadger oh bless you. I do feel for you. It is tough with any child but with one with such demanding needs I cannot begin to imagine (my boy is very placid). I hope you find a resolution it sounds beyond relentless.

I’m so sorry to read this. Your gastro issues will be exacerbated by the lack of sleep, stress and all the cortisol in your system. I feel like someone urgently needs to take over for at least a few days or you’re going to fall apart. But I guess everyone just expects you to keep going. I had two autistic boys as a single parent but my situation was nowhere near as difficult…but I still almost fell apart. I was literally going out on walks and screaming and slapping myself around the face.

Will an esomeprazole tablet settle your stomach a bit? You can get them from a supermarket these days. You may have a structural issue (a hernia) but it may still give you some relief. I’m not medically trained at all but I’ve had GERD for 12 years. Maybe speak to your doctor about the esomeprazole if you’ve not already tried them.

I empathise OP, I also have an ASD child who was disagnosed after a younger sibling arrived. Perhaps this could be moved to the special needs section instead of AIBU? Not sure how helpful the above comments about a residential school for an almost 3 year old are?

The biggest thing that jumps out from your post is your husbands input. Is he pulling his weight with your children? Is there any way he could WFH? I say that because a nap on my husband's lunch break is the only way I cope with my DS's terrible sleep.

The nursery commute sounds hard. Is there any way you could find a closer one but trial some shorter sessions?

My DS also has a short fuse with our baby and can also be aggressive at times. Have you considered something like an iPad or tablet? We have a few PECS apps and although he doesn't use them yet we also have other games he can play for some time away from the baby.

Perhaps you could go back to the GP and ask for some counselling rather than medication?