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.

I think the main problem is the bravado face we put on. We talk about his difficulties with ease, but never really say how it makes us feel.

I totally get this. We have a non-verbal autistic 8yo son, he functions at around the 2yo level. I work full-time, DH is SAHD and carer, but I end up with the appointments and paperwork. And I do put a brave face on it, going to work helps me to feel a little more "normal", but it can be incredibly hard to hear my work colleagues talk about their children - children who are younger than my son, but who can do sooooo much more than him. So I tend to brush off the five times we get up in the night to re-settle him to sleep, the food all over the wall, the padding in his bedroom (we opted to put up padding rather than repair the plaster), the occasional outings that have to be planned to the nth degree. I don't know if it's the right thing to stifle our genuine feelings, but what option do we have? People don't want to hear how difficult our lives are. They have no solutions, no means to help. And don't get me started on "disability social workers" who are less use than a chocolate teapot.

So - practicalities. A slow cooker can help with adult meals (we have a casserole at least once per week). There's nothing wrong with a takeaway. There's nothing wrong with your child eating just mash and gravy, every day, for weeks on end - at least they are eating something! You can repaint walls when they are older. Laminate floors might seem cold but they are practical. Relish the fact that you cannot have visitors to the house as it causes a meltdown, it means you don't have to clean and tidy so often.

With regards to grants, check out - the Family Fund (we use them for holiday grants); Caudwell Children (gave us 80% grant towards a Mclaren Major buggy); Cerebra (gave us 80% grant towards an iPad for communication, although he only uses it for games like Mebop). We had a week in Pembrokeshire last year at a specialist house (Harriet Davis Trust).

I'm northwest too - major city. If I can give you any other pointers based on a couple of years more experience of the ASD world, let me know. Huge hugs to you and your family

I think one of the dangers of programmes like the Chris Peckham on and all the current stuff about successful people with autism is that people forget that actually what you are going through is the reality of autism for many people.

I know its hard to get anyone to look after DS1 but do you have friends who would take your younger son out for a bit or even come to the house during the day and be company and help for whoever is with children giving the other one a break to go out for a coffee etc. I would happily do that for a friend. Or a local teenager you could pay to do that. Be specific with people about what would help

Surely we need more Chris Peckham type programmes. I found it brilliant an insightful glimpse into his particular frustrations and challenges. I really appreciated that he expressed the old mantra you've met one person with autism you only know about one persons autism (phrased much better than me though).

For my DS1 (14) and autistic, it came atjust the right time. He owns his autism but feels isolated by it some of the time. To see a high profile person saying 'hey life is full of challenges and frustrations but finding yourself and creating your own life can be done'. DS1 has a very high IQ but various issues associated with his Autism that mean some very basic tasks like using the toilet in a usual way are challenges. How much independance he'll achieve I just don't know. Any inspiration to create motivation for him to want to achieve I'll take.

We need society to see beyond Rain Man representing all autism. We need ASD in as many guises as possible to feature in the soaps and dramas as a representative slice of society. Be it ASD in functioning adults or going through the diagnosis process with a child/ teen. Just any slices and snippets of examples of ASD life.

The greater exposure we can all have to tiny insights into others situations the greater tolerance that can be built up. With understanding and exposure we'll be better placed to secure funding for more funded nursery support, improved early intervention, adult support etc.

ImSoExhausted - I’m another parent of an autistic child. Just wanted to add my support. Your family are lucky to have you. It sounds like you’re doing your absolute best (even though it is bloody difficult!). Not everyone will get how hard it can be.

Just echoing others here, but these pieces of advice stood out for me:

• see if you can get DLA reassessed
• get a cleaner if you can
• apply for as much support/ help as you can
• it does get better - hang in there!

I have an autistic daughter; she's not quite as much of a handful as yours, OP, but she's still a full-time job at age 10 and yes, it's exhausting. My DH works full time so 99% of handling her falls to me - including, for almost the entirety of the last school year, either part- or full-time homeschooling her. I gave up any hopes of having a tidy house a long time ago. I think in many ways that unless someone has an autistic child themselves they can't fully appreciate the challenges involved or the sheer mental, emotional and physical exhaustion that comes with the territory, when your whole life revolves around your child.

I really do hope the EHC plan comes through; once we had that in place it meant we could get my daughter into a good school with a specialist ASD unit and it's made the world of difference to my daughter - and by extension, to us. I do second the suggestion to get a cleaner in - even if it's only a couple of times a week, it's amazing what a difference it makes. We got a cleaner in because between caring for my daughter and my fibro, there was just no way I could keep on top of it and the state of the place just made everything harder to cope with.

Whilst you're going through the EHC assessment process, the APRO handling your son's case should be able to recommend local groups for parents of ASD kids and other support available; do take advantage of all the help you're offered.

Just hang in there, OP; it's a tough job, but it sounds like you have the tenacity and determination to keep at it.

Really feel for you OP. Stick with your degree, not just for a future career, but as something you are doing for yourself.

Bit of a tangent, but leather sofas are so often sold second hand, but practically new on eBay. I’m always amazed at how cheap they go for.

URGENT

Don't even know if people are still following this thread. But my sons supposedly wonderful nursery are now apparently kicking him out! They're putting a plan in place to have him out by Christmas?! This is the first I've heard of any issues!
I'm completely lost. We'll have Zero respite, he has friends there and the disrupt will be impossible to manage!

Any help and advice would be appreciated. I have to go to a meeting with them at 3pm

They’re kicking him out? Oh my god why? Has this just come about or have they mentioned issues before? I think you need exact reasons why and if there’s issues why haven’t they mentioned anything before and what support and plan are in place. Is his a mainstream nursery?

@Msqueen33 at the moment I honestly don't know! She's mentioned an incident that I've never heard of before (him tipping the dinner trolley over)
She said she feels she can't safe guard him anymore and that she's felt like this for a few months?! We had a meeting literally 3 weeks ago and none of this was mentioned. Not once did they say they were thinking of kicking him out. I don't even know what to do

That’s appalling. I’d check out your councils local offer and see what services are available to you and nursery. I’d also look into other nurseries. Have you got any special need nurseries locally? I’d ask about what support they can give your son. In my experience the ones that don’t want you just aren’t the right place. We took my daughter out of her nursery as they complained she tried to take her trousers off one day when she’d started potty training. Ask the nursery about incidents and ask have they asked the council for any funding to help support him and are they planning to request an ehcp. I’m assuming he’s going to go school next year?

@Msqueen33 this is the special needs nursery it's a Scope one!
I've gotten some advice from local autism charities, and they're all saying it's more than likely illegal. This is the only nursery that was even suitable for him, we moved here a year ago on advice from the health visitor and local council and were assured that because it was a SEND nursery, DS would get all the help he needs. I just don't know what to do, I'm about to go into a meeting with them, feeling very fragile right now

Ds1 was never as bad as your DS, but I do have some level of understanding.
Many posters in the Sn section are very knowledgeable and lots of us are very sympathetic at least.

we do understand. Hope that helps. I hope you get the support that you need.

Just sending some hand holding and support your way.
Life is tough enough without professionals making it harder.
However, this can't be the only provision. Does the local special school have a nursery class? We do- we take children full time from 2. If this Sen nursery are saying they can't cope, this is ammunition for more support.
But it really sucks in the short term.

Bloody hell! So it’s a special needs nursery?! It must be a very poor one. I’d ask the council for other options. Ours was a mainstream preschool but very inclusive. My dd has some very challenging behaviours and they were brill (school another story).

Biggest hugs I hope you’re okay.

So the meeting is over. Feel like a shell of my former self right now

Although the nursery manager is admitting a massive fault, it's been decided that DS will have left this setting by the end of Jan. There is literally nowhere within a 3 mile radius that he can go, if he gets anywhere far we'll have to navigate public transport (something he despises and we don't drive)

Basically, there's been a number of incidents such as DS pushing past another child, scaling a fence and climbing over it. Naturally the staff ran to make sure DS didn't escape, but the girl he pushed past actually fell and broke her arm.

There's been many more issues of him pushing and picking up and throwing children, pushing over the dinner cart, pushing over a fish tank, climbing into a tree and jumping on top of children.

The biggest fault is that we just didn't know ANY of this. We pick him up early so we can informally chat with staff, not once have they mentioned this. Even in the meeting a few weeks ago, nothing specific was mentioned at all. The manager admits fault at ringing and telling me he was going, she assumed we knew he was already on that pathway a long time ago.

I'm debating

*I'm devastated

It may be worth reposting in the special needs boards for more specific advice.

As awful as it is now though it sounds as if he will be better off away from there! If you feel up to it I would be tempted to complain to the local lea/ofsted/scope

Does he have an EHCP in place?

Bless you. Kids of that age are exhausting enough without all all the SN which sounds quite severe.
Unfortunately I think you have to play hardball and threaten that you can't cope with him and that they will have to take him into care unless they give you some respite. Only then will they begin to take you seriously. If you are seen to be coping then they will leave you to cope.

I do know how hard looking after severely Autistic children can be for short periods. I have no idea how people cope 24/7.
Have you got all the help you can regarding using Makaton, schedules etc?

Some will be typical three year old behaviour. I’ve found with my kids that they make all the behaviour related to their Sen and that other kids did it but it was never such a big deal. The nursery frankly sound shit.

Can you speak to the council? I’d definitely speak to your hv. You need to find someone who can signpost you to more support.

Definitely apply for an ehcp. You can do that yourself. Ipsea has a model letters section. Each area differs widely but sounds like you need somewhere that is more specialist as this nursery don’t sound like they have a clue.

Big big hugs.

Definitely push for ehcp- transport to the specialist provision will be a part of that.
The special needs cat people will help you out!

Not sure whether someone has already mention applying for a needs assessment from social services?

They can provide respite, pay and provide carer for leisure activities etc, etc.

www.gov.uk/apply-needs-assessment-social-services

I can’t remember if you said where you live but you might be able to ask for a referral for a social worker. Google local autism charities and try and tap into as much support as possible.

contact.org.uk/media/778843/getting_social_care_services_for_your_disabled_child_in_england.pdf

Might be helpful too

I am so sorry you are going through this! Our high functioning autistic son has just left home and after all the years of looking after him we now find ourselves at a loose end. Slightly off topic but people like the op clearly need some support from people who understand. Does anyone know of any charities that offer this? OP could potentially turn to them for support and we would be very interested in volunteering with something like that too.

Thank you for all the advice

I've spoken to a few charities today, who all agree the nursery have been taking the piss.

I'm just at a complete loss. I'm seriously considering dropping out of uni because I have no idea how I'm supposed to juggle all of this whilst being on placement in a school (teaching degree) and doing all my assignments.