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.

Look up Insentive Interaction. There are some fab you tube videos about it.

Basically it’s copying your child’s actions, sounds etc. By doing this you are getting into their world and it encourages eye contact, interaction with others, turn taking etc.

I’ve been doing this with my boy. The results are amazing

By the way permatired it's actually a good thing the OP has another NT child. My sibling has ASD as well as other problems and now we're adults I can help my parents with addressing their needs and its hugely reassuring to my parents that their other child has someone to look out for them when they die.

No advice I'm afraid for you OP but I wish you luck in getting a better solution sorted, so much good advice on here

@ImSoExhausted in one of your posts, you mention a support worker. Do you have a council based support worker?
Which area are you in?
In the area I am in the children's disability team only take children with two issues, one of the, having to be physical. I know, fucking stupid. But, there is a lower down service, in children and families who provide some support. Not to the same level, but low level funding, access to clubs etc. It's pretty helpful. I work for the council, sorry if I sound like an advert. And obviously I think it's good. Most of the families we ask for feedback agree though which I think is important.
Nurseries, depending on the type, is it private? Or school based?
Regarding the EHCP, u need to get it submitted as soon as. Pull together everything you have, and ask for help from nursery to do your part of the evidence. See if they can have him for half an hour, while you sit with the senco and write a stat,net for your evidence. Any gp appointments where you have discussed behaviour? Get them to contribute.
There are local baby banks, in some areas, that can provide support services. Like cleaning, mothers help etc.
If you want a hand, getting support, PM me. It's what I do for a job. It's really hard brainstorming when I don't know where you are.
While I don't understand how hard your life is, as I don't have to live it, I can understand it is hard and you are doing your best.

can you make a room safe and lock him in for short periods ? - We rigged up a barrier for our dc room once he had learned to open the stairgate and just resigned ourselves to that room taking a bit of a bashing.

It is monumentally hard - well done for keeping up with uni and managing this. Well done for staying together with your DH through all of this as well - it can put a real strain on a relationship. SN list here was one of the things that kept me sane.

If DM can't get to grips with DS yet, could she give your 2nd dc some extra attention?

Thank you so much for all your kind replies I'll try to answer a few questions in one post.

For those asking about communication strategies we use object of reference, so show him a nappy and say 'nappy time' when it's time for a change etc. He has flash cards for things like bath time and when we're waiting to go in the car. He's yet to go use them to ask us directly for something, but he does seem to understand when we show him one. It's small, but it does help.

We also do A LOT of repetition play. So if he says even the slightest babble whilst playing, we'll jump on that and say things like, 'Oh is the dinosaur roaring?' And try and engage in his games and give him the right words for the scenario. (If that makes sense??)

We had a SALT from the NHS and she was appalling. She wanted him to sit for 30+ minutes to do activities. We now have a private SALT who he sees once a month that supports him in nursery and his nursery workers, she gives them strategies to put in place and they do seem to help - especially on bad days.

I'm not entirely sure who the person is that helps us with DLA forms and is helping with the EHCP if that makes sense? DS goes to a Scope nursery that is also part of a children's centre, I think she works for the children's centre. We have meetings with her, the nursery manager, his key worker and the nursery SENCO every two months. These usually discuss his behaviour, what it's been like at home versus nursery, what we can do to help him.

The last meeting we spoke about schools process and they said we need to make meeting with mainstream SENCO's and take DS with us, they gave us a list of questions to ask the schools to see if they could cope with DS. All these questions are designed to have a 'no' answer, but according to the council we need to have been told no by all our local mainstreams before we can even look at Special Schools.

Oh! And we have an educational psychologist who visits him in nursery every few months and writes a report for us. We do seem to have all the right people.

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. These people helping us probably have no idea that we're struggling sometimes because we do tick all the boxes for appointment organisation, medications, mediation and general day-to-day stuff.

If anything, this thread has made me realise we need to ask for help. There's no point feeling like this when there is help available, we just need to ask for it

Have you heard of Family Fund? One of my best experiences ever with paperwork - the worker who came round to talk through the first application actually understood. What is more when we got our first grant - they were happy to listen - initally had given us an argos voucher which wouldn't have let us buy the piece of equipment I was after - so, I rang, they cancelled the initial voucher and sourced what we actually needed. A piece of cake especially in comparison with DLA, EHCP.

@chickensarethebest what did you get from family fund if you don't mind me asking?
We'd love a trampoline but sadly don't have the garden space.

What we're in desperate need of is new couches, preferably leather ones that can be wiped down. Ours were second hand when bought, and now 4 years old and ruined. The wooden support is snapped from him jumping on it, the cushions stink as they're all foam with fabric covers so impossible to clean properly.

I've been there and done that and yes it is soul destroying. Ds is 22 now and a joy mostly but we had many years of it being a heartbreaking slog.
I can tell you a few ways we survived if that would help. Locks are your friend and allow limited access to safe areas so have locks on every room door and use them. Ds was never allowed in the kitchen as it was dangerous, our bedroom or his brothers' and sister's bedroom because they needed space to play and have things that were special that ds couldn't get to.
In the spaces he used we kept it to the bare minimum so anything that he'd throw or trash we'd remove and lock away, we attached furniture such as chests of drawers to the wall if they were vital in the rooms he used.
It was like being a jailer a lot of the time but giving him free rein just wasn't safe. We also did a lot of divide and conquer so one of us had ds and the other had the others purely so that the others got some time and attention.
As for the cleaning it was easier once ds had limited access tbh and dh would take him to run in the park a few times a week and I'd manically clean whilst he was out.
I'm sure dh is exhausted, ds still doesn't sleep through the night at 22, but he does need to use at least a couple of those hours when both are at nursery to do some chores really as it will help if there is some sort of order both for ds and the rest of you.

OP - our son was also diagnosed aged 3.5. I know what you are going through. We could not leave him unattended for a second then. He was a compete danger to himself. He mostly babbled and repeated phrases from the TV. He had no meaningful speech. It was an awful time for us and for a long long time it was just a relentless hellish existence. It put a huge strain on our marriage and also meant we were not able to do activities. Very heartfelt hugs from me.
What actually helped us - finding a local support playgroup for SN on a weekend. We used to take both boys and it was a godsend. Lots of Sen kids so it was lively but no one batted an eyelid at the behaviour, we met some other local parents and made friends. Our son is now 10 and a couple of these parents are still friends. We also used lots of visuals with our son - with some limited effect but he did eventually start to use now and next symbols himself. Our son has made lots of progress as have all our friends kids who have SN. Your son will change and progress don't lose sight of that.
But god it is so so hard. We also saw less of our old friends whose kids did not have SN. I think that becomes inevitable in lots of situations where the kids can do activities that are just simply not accessible for your family.
One day at a time. There was also a specialist nursery in our area although we were not offered a place. Also there was a specialist early years service - not much help but it was another council service that flagged up other support.

I haven't read any replies but I just wanted to say I really understand.

I'm a stay at home mum to 3 boys, the youngest two have autism (3&2 years old) It has nearly broke me and my marriage. We're just seeing some improvements in the last few months since they started at a special nursery. I don't have any advice other than to try to get as much help as possible. I'm currently being assessed by my local authorities disabilities team to try and get some respite care. They're may be help out there for your family to access.

Hammock with wooden stand - that was the one they sourced
Ipad
Laptop
I topped up both tech with extra money to get exactly what DS2 wanted
Bed
You never receive money - either they put you into contact with their suppliers or send a voucher.
Link below - furniture is on it.

www.familyfund.org.uk/FAQs/what-can-we-apply-for
It has helped me re-jig finances and the week they say yes, well, it gives a real lift to the day-to-day struggle.

Which county are you? There’s a few of us here and if we share a county we might be able to give you specific advice.

Best advice I have is fight like hell. Threaten and demand because it’s too easy for people to say no. There’s lots of us mums here so even if you can’t Find the real life support we’ll have your back here.

Feel free to shoot me down if this has been mentioned or if it is completely unfeasible (my DD is nt so I can only imagine how difficult life is for you). If the housework is getting you down could you afford a cleaner, even if it’s every other week, while your DS is at nursery. I know it’s not going to solve all your problems but it might make life a bit easier for you.

Ms is right - that is exactly my experience, too. Don't fight, don't get. It is very wrong but that is how it is.

Oh OP I don’t want to read and run. We’re another family with ASD among us.
I can’t formulate too much of a reply right now... just wanted to stand beside you.

@Msqueen33 I'm in the UK, north west area without being too specific. I live right on the border of two boroughs which means the nearest nurseries to me, aren't actually the ones DS can go to and get funding.

Consider a sofa bed instead of a regular sofa. Previous sofa had wooden frame and we needed something much sturdier. Ours would survive a nuclear attack. The cushions are destroyed but I put a throw over it and carry on. We got ours second hand and paid a lot but new they cost over $5000. The brand is American leather. Don't think they sell in the uk but you want something like that.

@chickensarethebest if you don't mind me asking (again) did you get all that in one go? I know you can apply every year, we haven't yet applied as we can't decide what we need more, couches, or a new iPad for DS. I'm airing on the side of couches, as an iPad could be a Christmas and birthday present. I'm not sure he'd be very impressed with a new couch on Christmas morning haha

Yes kerp you g to appts and being organized but tell then you struggling and ask for help. Be sprcific.
I need someone to be with ds1 on Saturday from 1 to 7 pm so we can go out as a family to the park.
I need help after school on Thursday from 4 to 7 so I can taje other ds toi swimming.
I need help in Friday 2 to 5 pm so I can get household tasks done.
I can't do anything while supervising ds1.
I can't take both dc anywhere together as ds1 needs on e to one our family life is breaking down.
Etc

Having a dss who is asd and global development delay I understand your feelings. Reach out to the local NAS group and see if there is any local support for you guys. Stay strong you're both doing an amazing job!

You also need a lot more speech and play sessions which are in the home. The places you go out to were exhausting for me and I didn't feel like DS was making as much progress.

We had a crap therapist assigned to us at first. The daycare our son was at was brilliant. The director marched her out of the building and called the state to complain about her before calling the people who had sent her and told them to send their best therapist only. We got an amazing lady who changed DS life.

Photos
Visual schedules
IPad speech apps
Ask slt about total communication
Ask for slt who is familiar with Pecs and iPad apps like proloquo
Ask about behavioural support
Ask NAS about early bird schemes and local groups

I’m fed up of how NTs don’t make reasonable accommodations for autistic people too.

I do know it’s hard. One of mine doesn’t sleep, smears, has no sense of danger, headbangs.

But it’s frustrating people saying autism is so negative always.

No, it has been over the last four years.

If family fund provided the ipad, would that free up some money towards new couches?