I’m so fucking exhausted by it all

[RobinEggs]

Ds1 is 6 and autistic, generally considered high functioning in that he is articulate, clever and can show an awful lot of empathy. But he also regularly poo’s himself (which he does if he’s doing something which he doesn’t want to stop doing to go to the loo), wets himself almost everyday, eats exactly 6 different food items and will only drink milk at a very specific temperature (no other drinks tolerated at all), if anyone speaks to him he sits on the floor with his hands over his ears for about 10 minutes before he will consider moving. He also moans about everything, constantly. Even things he says he likes or wants to do he will moan about and want to go home within 10 minutes. He kicks and bites and today he pulled my bra down at the park in front of a load of people and I just started crying.

I am completely on my own mon-fri and despite having money, no babysitter or childminder will table him even one to one as he’s just so horrible. I have a 2 year old who I can’t do anything with while ds1 is around and I feel so awful about it.

All the parents of kids at school say how lucky I am that he’s so high functioning and clever and just don’t believe what he is like when he’s at home. He sits nicely at school and just gets on with his work but all he ever does is trash the house, hit everyone and growl at home.

I just want someone to take him away. I genuinely can’t do another 5 weeks of this. I’ve phoned the doctor but the can’t help. My local autistic parents group are all lovely and sympathetic but they can’t help me. I had to leave my 2 year old in his buggy with a complete stranger for 10 minutes today while I wrestled ds1 back into the car park from the park. I just don’t know how o split myself in 2 and look after 2 completely different children who both need my full attention.

Sorry to hear you're having such a tough time. I am struggling with a newborn who just sleeps and cries so I can only imagine the intensity of the challenge you face.

Have you considered autistic summer camps? I did a quick search on Google and a few things came up. Not sure how great they are though.

I know you said you can't get a childminder for your older son, but perhaps you could get one for your younger son to ensure he's getting the care and attention he needs while you focus on the elder on. Maybe just for a couple of days a week.

You mentioned you're completely on your own Mon-Fri, is there any small chance your partner can get a few days off in the coming weeks? It'll give you something to look forward to and enable you to get some much needed support.

I'm not sure what else to suggest but I do hope you find some sort of solution. Hang in there!

Is there any kind of respite care you could access?

I’m not entitled to any respite as he is so ‘high functioning’. There’s no way dh would take any time off work, we’re already almost splitting up because of his inability to help for the 48hrs he spends with us a week.

Daycare for ds2 is an option but it seems so unfair on him. He goes to a preschool 1.5 days a week normally but it’s term time only.

I took them to the beach this morning and ended up crying again when ds1 started throwing rocks at me and I couldn’t let ds2 go for a paddle as ds1 said if I moved from sitting next to him he’d run into the road.

I don't know what the answer is, but I feel for you. Keep looking for help. I imagine it will get easier as dc get bigger.

Hi there that sounds so so tough to deal with constantly.
When I worked as senco in a secondary school I had a couple of students who were similar in that they appeared to cope at school but couldn’t at home. Is your senco able to refer you to early help or your area equivalent? They may be able to direct you towards other services which are available in your area.
Some parents found that the difficultly was with needing to let off steam/feel safe after a tough day of holding it all in together. Sensory play, squeeze hugs, weighted blankets, pressured massage all helped to calm after school. You may have tried all of these but that was my experience. They also found that planning every day including toilet stops, drinks, travel etc helped to maintain focus. One family had to take on literally minute by minute and tick off as they did it e.g. drive to park, play on swings, play on slide, toilet stop, have a drink, play on climbing frame etc. They found that by planning each day meticulously the child knew exactly what to expect and when meaning it was somewhat easier to manage. They told me it took 2 weeks of doing the planning before it had an impact on behaviour.

Sorry, I’ve just realised that’s a massive ramble! Hope something helps and if not I’m here to listen.

I don’t want to say I’m so sorry for you - but I do have such empathy. I support SEN children, some of whom exhibit all the behaviours you’ve just said. You are not alone. I find parenting with my two completely draining also.

It’s frustrating you don’t have access to respite - could you appeal? Or do you not have any family that could ease the load at all? Even just for a few hours? I’m wondering if there’s any

Sorry - didn’t mean to reply without finishing! I meant anywhere he can go even in the house? I know of a friend who used to leave hers in their bedroom.. they weren’t in harms way, not neglected or hungry - it was just half an hour survival. Sorry if that sounds awful! I hope you get some help x

Oh OP that sounds really tough, I'm sorry I don't have any advice but just wanted to keep this bumped for you for some more knowledgeable people to come along

Have you contacted your local autism charity for details of respite services? The lady that runs our local one also has a business offering respite breaks for autistic children for a fee (from what I remember it's not huge), and separate days out for siblings of autistic children.

westlife that’s kind of what I’ve been doing - sending him off to his room with his iPad for an hour or so a day. Just so I can spend a tiny bit of time with my little boy without either of us being hit or growled at.

What’s the name of your local charity seriously? I’d love to find some more help locally. When he was diagnosed I was pointed towards a local parents group but that’s it. It’s all lovely, lots of tea and sympathy, but it’s basically just a bunch of us meeting in Costa. There’s no actual support or experts or anything.

His senco lady is only contactable during term time. Even then he only gets half a day a week doing a social skills group thing.

Thank you all so much for all your advice. I’ve had a good cry and I’m feeling a lot better now

When I read your message I actually wondered if I’d posted this myself and forgotten I had! I have a 6 year old son who sounds identical to yours. Mine is at special needs school (autism specific high functioning school) and the summer holidays are dreadful for us. I love my son to the moon and back but it’s so hard being on my own with him! (I have a much older child, a teen who visits her dad abroad for half the holidays, I am remarried and ds is my dhs). I totally empathise with everything you wrote. This week I have done lots of things ds has asked to do - the zoo etc- but everything we’ve done he’s moaned the whole time and found it stressful and we’ve ended up just coming home and him sitting on his tablet!

Things that do help are having low expectations- just getting through a day with everyone fed and relatively happy is a win. Special needs groups on Facebook- look up a few, type in autism and see what comes up. Join any local groups and do find ones that you can go to asd holiday meet ups, there must be some and it will get you all out of the house. If it’s a disaster everyone will understand!

What kind of support does your son have at school? Since I pushed for an ehcp and got my son into specialist school he is generally happier and although the holidays are difficult I know he is making progress in so many ways which will eventually help at home, I hope!

Just remember you’re doing an amazing job and it won’t always be this difficult! If you need to hide in the bathroom and open the wine at 11am then go for it - it’s called survival 😂 I really do hope you manage to get some support x

www.home-start.org.uk

Would something like this be an option?

Agree with pp about perhaps finding a childminder or club for your youngest- a couple of days a week. Dont feel guilty, two days is nothing. He would probably enjoy it.

Bloody annoys me that services all over are being cut/ reduced for people who need help. Or that they don't even exist in the first place.

So sorry you are going through this. If i had seen you in the park today i would have come over and asked if you needed a cup of tea or someone to shout at for a few minutes

RobinEggs I have a 4.5 yr old with autism, not high functioning as he has a development delay too so he's more like a 2.5 year old, he is diagnosed as moderately autistic, but some days I think the behaviour is way more than moderate! Some days are worse than others but without meaning to sound negative it's been worse most days for the last year or so.

Every day it's tantrums, hitting, screaming, deliberately breaking things, needing to be constantly supervised. He could get himself into trouble in an empty room, No one watches him for me either as he is too much to handle and tbh I don't leave him ever as he can't be trusted and no one knows how to deal with his behaviour other than me so I just don't bother he needs too much supervision and I don't trust no one enough to watch him properly because of his needs iyswim, it is exhausting, & everything is such a drama,

For example getting him up the stairs to bed tonight (this happened between the bottom step and the top step lol) he threw all my shoes over the bannister, pulled the stair gate off the wall on the way up and all the plaster came off the wall and he broke his bubble machine throwing it over the pissing bannister! all while I had hold of his hand. And it's that sort of behaviour on repeat

We go out a lot because he drives me crackers indoors, he's no better behaved outside but it breaks the day up, he has lots of structure etc etc not sure what to do as nothing really helps! hope he gets better as he gets older! At the minute we've been stuck in the terrible twos with autism on top for about 2 years.. it's been rough

I don't envy you having two, I think I'd have an actual breakdown lol

Don't have any advice for you, but just wanted you to know your not alone

It's Autism Berkshire. The lady that runs the branch in my area is called Claire. We also have a charity called Parenting Special Children for local residents. These organisations may not be local to you but they may be able to point you in the right direction. Maybe also try the National Autistic Society. Good luck, I really hope you're able to find some support

While you haven't been able to find a childminder could you advertise for a student e.g. psychology or nursing, who could come to your home for a few hours a week and engage/play with him, building up a relationship and eventually taking him out? Or an au pair type person. You'd need to find someone capable and would have to pay but it might be worth it if possible.

and for you Op.