To be fed up of Autism

[ImSoExhausted]

My 3 and a half year old son has been formally diagnosed with ASD for 4 months now. He was on the pathway for a year (relatively short, I know) but we'd suspected he was autistic from when he was about 9 months old.

I guess my AIBU is asking if it is unreasonable to be totally and utterly exhausted? I'm currently doing a very demanding degree, DH is a carer for DS1 and we also have another DS who is 15 months old.
I'm so fed up. There's two days where for 5 hours both DS's go to nursery. This is supposed to be when DH can do some work (he does some freelance bits and pieces) and catch up on housework. In reality, it's just him catching up on rest.

I completely understand why DH can't manage any housework, DS can't be left unsupervised for even a moment. He doesn't understand spoken language and is non-verbal. If he's left in a highchair he will rock in it until it falls over. He will climb over baby gates and is generally just an escape artist. This means DH spends his days shadowing him whilst still trying to entertain DS2.
When I come home from uni I try and do all the housework and make dinners/lunches for the next day. But it's getting so hard. The house seems to be permanently filthy and as well as the cleaning there's all the admin side too. I have to ring hospitals and chase appointments, phone schools for meetings, pay bills and do the shopping.
On weekends we try to get some cleaning done whilst one occupies the boys, we'll also try and do an activity together as DH can't really go anywhere with the two of them alone (he takes them on big long walks in the double pram, but can't take them to parent and toddler groups or the park iyswim)
DS1 is a two parent child. He needs someone running after him and someone keeping watch constantly for dangers and exits.

I'm so fed up of how Autism is ruling our lives. My poor DS1 can be so unhappy and distressed, then I feel like we're not giving DS2 enough attention because we're constantly facing problems with his brother.

I feel like I'm drowning. Nobody seems to understand the demand of having an autistic child. I get that everyone has to pay bills and clean their house, but our cleaning isn't 'normal' most people don't have to scrape feces of the wall multiple times a week. Most people can have wardrobes for their clothes to go away, not just boxes. We can't have any furniture higher than knee height because DS will climb it and hurt himself.

I don't even know what this thread is for. I just feel so guilty for almost wishing that DS wasn't autistic. I love him to pieces and he is absolutely amazing, but my god it's so difficult some weeks.

Does your dh work? I’ve juggled our two with Sen when my husband worked crazy hours and it’s really tough but how much of uni do you have left? To be honest I’m not sure there’s ever a good time for anything when child have Sen so i would be tempted to keep it up if you could. Are you near any family? Make sure you completely lower expectations aside from the must dos. My kids are fish fingers and chips tonight in front of their iPads as the youngest has been hell all day. Be kind to yourself. Good luck x

@Msqueen33 he does ad hoc work from home. Which is useful, it's just all the appointments.

The nursery want weekly meetings from now until he leaves, I'm basically working from 7:30 till 5:30 then my assignments on top of that for the next 3 months, then I'm back at uni 4 days a week. This is my first year, so a long time to go yet 😞

This is a ridiculous situation. Your DS is entitled to his Early Years education. Have you contacted your local SENDIAS? I would also look at the IPSEA website for a advice.

@Ikeameatballs what's the likelihood of him getting a place anywhere though?
The reality is, that this is the second setting to say they can't handle him. His last setting he was in for 5 months, and they said as they were not a specialist nursery, they weren't equipped to deal with his needs and we were moved to this Scope one.
He's been here a year and now they're saying the same. I can't afford to hire a 1-1 nanny. I'm just so upset that it's come to this with absolutely no warning.
As far as we could tell he was happy, settled and the staff loved him

I’d be furious at the nursery. Does have 1:1 there? Could they not apply for an ehcp and funding?

@Msqueen33 he has a 1-1 in place and has done for the last six weeks, but that is due to finish this week as it's only on a 6 week basis.
Apparently they haven't applied for higher needs funding and said they'll be doing that today

The nursery room staff have said they didn't feel comfortable discussing DS's behaviour with us or approaching us which I find absolutely absurd. I am always so forthcoming with his behaviour and I'm completely honest with how difficult he can be. I see no point in sugar coating it, so I presumed they had the same relationship with me. And even if they didn't feel comfortable telling us, they've been telling their manager so she should have been discussing it with us instead.

I'm starting to feel there may actually be laws being broken. They neglected to tell me that my child almost (had his leg over) escaped their playground. As well as an abundance of other safeguarding issues. I'm astounded at their incompetence

The nursery sounds awful. I don't know how all the incidents that you have described, managed to occur when your son had 1:1. Have they given you any incident sheets documenting what happened in the more serious incidents? How far are you along are you with the ehcp process? It is supposed to take only 20 weeks.
The LA are talking bullshit when they say he may not have a place till yr 1. They have to provide a place at the start of reception be it mainstream, local authority special or independent specialist.

Get on to Ipsea or similar as that’s not right. What a huge mess they’ve made. I’d be tempted to put in a formal complaint.

OP if you get a message that you've been reported, it's only because you've left your son's name in your post.

I'm sorry to hear about what you're going through, it really sounds like you're being passed from pillar to post.

What is a SN nursery doing being set up in such a way that children can get their legs over the walls? Sn children being “bolters” isn’t unusual so they should make sure it can’t happen with any sort of ease. (Should be the same in mainstream too of course but even more so in special education)

@Spikeyball in the whole time he's been there, the only thing I've signed or seen is an accident report for when a child bit him.

I've asked for all their risk assessments to be sent over as well as incident reports, I'm still waiting. Have a feeling they don't have them in all honesty

OP, we've edited your son's name out of your post and sent you a message. Hope that's okay.

So the incidents didn't actually happen or happened because of carelessness so they didn't want to leave a paper trail.

Or they can't be bothered to report them. Are these reports used to get the help needed in school later on? For example for another 1-1.

My daughter got out of her mainstream nursery and onto the school playground by unlocking a gate. It’s not good enough. They can’t just say they’re not coping. They’re meant to be a specialist nursery. How dare they not tell you what’s been going on. I’d be tempted to report them. I’d have a look round at other settings. Our mainstream preschool was fabulous as they’d done an autism award. They weren’t a Sen provision. And my daughter has some very challenging behaviours.

Also, I'd like to echo a PP that not all challenging behaviour is SEN related, even in a mainstream nursery kids shouldn't be able to jump over a fence.

And knocking over another child and hurting them is more bad luck than anything else really.

That's not to say parents of SN children don't have far more challenges btw and your son sounds like he needs a lot of support.

So I've been sent the risk assessments and incident reports.

No mention on the incident reports of the almost escape, the broken arm, the tipping of the hot food. Nothing.

The risk assessment is even more of a joke, it's 8 weeks out of date! It was due to be reviewed on the 10/09/2017!!! I cannot believe how incompetent they are.
I'm going to phone and report them to Ofsted on Monday. This is a serious process now. They're putting children at risk by not having method and risk assessments in place

Hi op, am late to the thread and haven't read it all but just wanted to say that in your position, I would throw everything you've got at getting the echp.Children can start at a SN school as soon as they turn 4.

We did this with our DS, I felt horrendously guilty but in reality, he eventually settled in and it gave us a small semblance of a normal life. He was the first child the school had ever had that young but it was our legal right, even tho I felt like such a shit sending him.

He now loves his school and at nearly 8 is starting to make progress.

My other advice is that if your ds doesn't sleep, ask the paed about melatonin.

It is so very hard and I'm not surprised you are exhausted. Try to keep going with your degree if you can and keep working together with dh, pull the load together, step by step. Be kind to each other and yourselves.

Does anybody know if I'd be able to record the next meetings I have? This is because my husband won't be in attendance due to looking after both DS's, and another reason is because I've not once received minutes from the meetings we have had.
I would be able to record the meetings, then use software to translate the voice to text and then I could send the nursery a copy of the text minutes.
Do you think that would be allowed? It's only for personal use and I would give them any record of recordings that I have. Can't find any specific law about this

Bit of a grey area but I have recorded meetings but it’s for my own personal use. I don’t think people take kindly to it but I often don’t ask as they’re only for me as I process things very slowly. I think it’s only illegal if it’s 1:1 and you use it against them.

I'm sorry it's a very long thread and I don't have time to read it all. In terms of safe keeping at home have a look into getting a cosy fit or a safe space. You can get these funded by various charities and you may have a local charity that will do the applications for you. You need somewhere your child can't escape from at home.