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To be fed up of Autism

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ImSoExhausted Sat 28-Oct-17 22:54:46

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.

RemainOptimistic Sat 28-Oct-17 23:00:16

Didn't want to read and run OP. But you might want to get this moved to a different board.

Can you not get the 30 hours for 3 year old scheme at nursery?

formerbabe Sat 28-Oct-17 23:01:19

I'm sorry I have no advice but didn't want to read and run. It must be incredibly hard and it sounds like you're doing a great job...hope that doesn't sound patronising. Hopefully someone more knowledgeable will be able to give you some advice.
flowers

rightknockered Sat 28-Oct-17 23:02:50

Hi, I feel like this a lot lately, have three autistic sons. YANBU at all.
Your ds1 is 3 and a half, do you have a full time nursery place for him? I assume you must have started an EHCP process for him. In my area there is Eearly Years support, to provide support in mainstream nursery settings, or you may be able to get him a place at a Special Needs Nursery. Has he started PECs or another communication system such as Makaton, all of this can be helpful.
I'm sorry if I have made stupid suggestions, and you have already started sorting out everything, the wait for help and support is a killer.
Hugs to you x

Boulshired Sat 28-Oct-17 23:04:26

You will have some more time once at school. You have to accept that you may never have the perfect home. I have a very minimal house and all wipeable surfaces. I also have keycode locks on all my doors so my child has controlled access and for some rooms no access. Most of all you have to be kind to yourself and DH as it is this bloody hard.

ImSoExhausted Sat 28-Oct-17 23:04:32

@RemainOptimistic I doubt it, even if we did qualify, nursery won't have him longer than they do (15 free hours but only 10 a week so they can have him over holidays as well)
We asked if we could up his days to three and pay for the third day and they refused because of his behaviour and how demanding he is.
There's no other nursery in our area suitable, so that's where he has to stay

ImSoExhausted Sat 28-Oct-17 23:06:45

@rightknockered we're reapplying for EHCP at the moment, we got refused the first time but his behaviour has changed drastically since.
The nursery won't have him for longer than they already do and we're really struggling to find a school for next year. All our local mainstreams have said they're not capable of taking him on and we can't even look around the special schools without a EHCP in place.
The council have gone as far as to suggest he might have to wait till Year 1 to go to school sad

rightknockered Sat 28-Oct-17 23:07:11

OP, if you start an EHCP you can name the nursery, and force your LA to provide support. Your LA has a legal obligation to know which children living in the borough need extra support and the must provide that support. Your paediatrician should be able to start the process and make referrals

ImSoExhausted Sat 28-Oct-17 23:09:22

@rightknockered the nursery applied to consortium for a 1-1, but it's only for 6 weeks then they have to reapply. The nursery is named on the EHCP, but because of the uncertainty of the 1-1, they won't commit to anymore hours, even if we paid.
Only a few weeks ago they were talking about cutting his hours further because of his aggression. Luckily consortium got a 1-1 in place before they made a final decision

SomethingNastyInTheBallPool Sat 28-Oct-17 23:09:26

Huge sympathy, OP. I also have a 3.5-year-old who can’t be left for a millisecond. For us, the free early years nursery funding has been a lifesaver. I can’t work much, thanks to all DD’s appointments, but the 15 hours she got from 2, and the 30 hours now she’s 3 are absolutely crucial for getting all the other stuff done (and for my sanity). If you haven’t already, I really, really recommend you see what’s available in your area.

rightknockered Sat 28-Oct-17 23:10:11

Ah gosh, sorry cross posted
I was told my 5 year old couldn't attend any school or nursery when he was nursery place. His actual EHCP was completed a year before a place became available at a SEN school so I understand that x
I think this is an emerging problem due to cutbacks, all I can say is keep plugging away, but make life simple for yourself in the mean time.
Do you have a local ASD support group you can access, there will be parents there with experience of dealing with your LA.

Unicornberry Sat 28-Oct-17 23:10:33

I totally understand. I have an autistic DC who sounds very similar and I get hardly any time to myself. We're finding pecs and makaton very useful. I don't know what support you can access as I'm not in the uk but I've heard there is support you can access in the uk.

SomethingNastyInTheBallPool Sat 28-Oct-17 23:11:09

Ah, crossposted. I’m sorry. Who are the consortium? The local authority?

rightknockered Sat 28-Oct-17 23:11:16

when he was nursery age, not place blush

Misspollyhadadollie Sat 28-Oct-17 23:14:23

I feel your pain! I am a single parent to 4 one with asd and according to my friend my house should always be spotless! This was when telling her how difficult I was finding things. She told me there was no excuse and it "wasn't impossible" it's horrible when people don't understand! My child is very similar can't be left alone or trys to flood my house for example or just does dangerous stuff. It's relentless. It hasn't got better either just harder!

ImSoExhausted Sat 28-Oct-17 23:14:30

We do get support from official people I suppose, help with forms and with his communication.
I'm finding it really difficult to be around people on my course who have neurotypical children the same age as DS. They moan about the most trivial things, sometimes I feel like screaming at them that I wish with all my heart that DS would constantly be asking them questions and asking for things.
A tutor (who knows my situation and how DS is) even made a comment directly to me about how depressing it is when her autistic nephew comes to visit as he doesn't even say hello to them. I was like, 'yeah. Can be quite depressing at times.'

ImSoExhausted Sat 28-Oct-17 23:15:44

@SomethingNastyInTheBallPool I think consortium are like an independent funding scheme that the council have in place. That's what I'm assuming anyway, I didn't ask many questions, was just glad of the help!

rightknockered Sat 28-Oct-17 23:17:57

Oh people can be shits. I barely talk to anyone about children now. The moment they start talking about how annoying their NT children are, I just make some excuse and walk away. People don't really want to hear about how life really is for me and my brood, they just like to win some sort of sympathy competition, or so it seems.
Do you have access to a local support group for parents of ASD children

recklessgran Sat 28-Oct-17 23:18:32

OP, do you have any professionals involved for example your local authority learning disabilities team or social worker? I have experience of similar problems and completely understand the despair and guilt you are feeling. Also,are you receiving DLA for DS1? If so, then could you afford to use some of it to pay for a cleaner? Would it be possible to get another nursery session for DS1 so that DS2 can have some time just for him? Have you enquired about respite care [I was SO reluctant about this and viewed it as a personal failure that we needed help.] There is help available but it is so time consuming and difficult to deal with when you are at such a low ebb, but so worth it in terms of the welfare of the whole family . Hugs for you OP - it does get easier but you need to get all the help you can and try not to feel guilty about it! Good luck OP - so sorry that you are having to go through this.

TheEmpressWears Sat 28-Oct-17 23:19:33

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NoobThebrave Sat 28-Oct-17 23:21:07

So so hard, you are doing an amazing job. Your nursery should be fighting for you. I used to be a SENCo, find the one at nursery and ask them to help you. Get borough involved and get the respite help you need. It is a frustrating thing, there will be hard days and good days. A child I cared for 1:1 finally got funding and it made a huge difference and ensured I could work with the school of parents choice to ensure they were placed and thrived. Ask for borough help with makaton, learning effective communication reduces the frustrations. good luck and care for each other...a rocky but worthy journey xx

ImSoExhausted Sat 28-Oct-17 23:21:23

@rightknockered it's so infuriating isn't it? They just sort of say 'aw, that's a shame' but they don't get that when I say 'DS didn't have a great day' it meant he screamed for 12 hours straight, not that he had a bit of tantrum. They don't want to hear it, and I feel out of touch with reality as I don't know what a 'normal' 3.9 year old should be doing.
We do, but it's impossible to get to their meetings. I'm at uni 5 days a week, and we have zero family support so even on my rare days off, it's difficult to go to support groups without both DS's in tow, then you just spend the whole time chasing them round sad

Roobear23 Sat 28-Oct-17 23:23:34

You could see if Home Start are in your area. A volunteer visits each week to support families in ways that are helpful to them. Families are matched with volunteers with similar experiences where possible.
It may not be what you need at all but might be worth a look. flowers

ImSoExhausted Sat 28-Oct-17 23:24:50

@recklessgran we tried to get more nursery time but they refused because of his behaviour sad
We have all the right people involved, his peadeatrican, SALT, the council SENCO support worker etc it just doesn't seem to really help us.
We do get middle rare DLA, but in all honesty, most of that seems to go on repairs for the house. He's pulled his door off 3 times in the last month, broken 2 bed, picked plaster off the walls and we had to put new laminate down as he peed on the carpets and we couldn't get rid of the smell.
Any spare DLA goes on days out to SEN friendly places so that we actually get out the house from time to time

MyDcAreMarvel Sat 28-Oct-17 23:25:54

Are you claiming dla and carers allowance , if not, you could use some of the money for a cleaner.
That's if you don't use it all for private therapy etc.

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