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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

To be fed up of Autism

195 replies

ImSoExhausted · 28/10/2017 22:54

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.

OP posts:
Original poster
ImSoExhausted · 29/10/2017 00:35

@permatiredmum I suspected but kept being told it was fine and just development delay. Anyway, I'm not sure why it matters about me having two children and when I had them, it still doesn't make it any easier. It was still incredibly difficult when DS1 was an only child.
We get child tax credits, carers allowance and DLA. I'm a student doing a degree that gets help from the government so DS2 has his childcare paid from student loans.
So whilst I'm not 'working' in the typical sense, I'm still out the house 35 hours a week. So I don't think I need a reality check at all thank you very much. Hmm

OP posts:
Original poster
ImSoExhausted · 29/10/2017 00:36

@CheckpointCharlie2 I very well may message you in the morning if that's okay?
Our nursery first told us it was impossible to get 1-1 as it didn't exist. Miraculously they seemed to get the funding when DS tried to bite a staff member Hmm

OP posts:
permatiredmum · 29/10/2017 00:37

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Original poster
ImSoExhausted · 29/10/2017 00:38

@springhappy that sounds so promising, thank you 💖
His relationship with his brother is a whole other thread. Mostly he just ignores him, but today he really tried to attack him and almost gave DS2 a black eye. When he gets tired or overwhelmed he lashes out at the first person available. It breaks my heart to separate them but there's no way I'd ever put DS2 at risk

OP posts:
user1471134011 · 29/10/2017 00:38

OP you don't need to justify yourself to anybody.

Holliewantstobehot · 29/10/2017 00:40

I don't really have any good advice. DS has ASD but more aspergers like. I did have three solid years when his behaviour was atrocious and the house was constantly dirty and messy. I am an LP and have a DD too. I was working at the time as DS didn't have his DLA and it was hell. Things are a little better now but I still find it hard to keep on top of things.

Are you doing your uni course full time? Would there be any way you could go part time? Just to take the pressure off a bit and allow you some time to sort EHCP etc;
Also DS used to find driving around in the car very calming. I used to drive round for ages and the kids were allowed to take it in turns to choose left or right at the junctions. He doesn't like it since his anxiety about leaving the house kicked in but it was lovely at the time, like a little bit of peace without too much effort. I don't know if you drive or not and it might be something your ds hates but I thought I'd mention it.

Anyway Flowers for you. I really hope you can get somewhere with the EHCP.

rightknockered · 29/10/2017 00:42

Do you consider your posts supportive Permatiredmum, or offensive?
Helpful, or aimed at attacking?

CheckpointCharlie2 · 29/10/2017 00:42

Yep no worries do pm me, I'm happy to help if I can!

Also just ignore the above nasty!

Original poster
ImSoExhausted · 29/10/2017 00:42

@permatiredmum I worked in a very well paid job from the time I was 19, paid taxes and did very well. I decided I wanted a career change and something more stability. Don't see how that's expecting the government to pick up the tab? Most households get tax credits and DLA isn't income related based anyway.

I don't think having another DS was adding to our 'problems'. I was just as entitled to have a family as the next person. If you had any clue about autism, you would know it's a wide spectrum and impossible to predict.

OP posts:
Original poster
ImSoExhausted · 29/10/2017 00:45

@Holliewantstobehot the course is full time, if it wasn't full time we wouldn't get any sort of maintenance loans Sad and with it being a teaching degree, you still have to complete full weeks in schools in 16 week blocks anyway (obviously unpaid) so I wouldn't even be able to have a part time job

OP posts:
Want2bSupermum · 29/10/2017 01:00

Just ignore ignorant people. I get exactly where you are coming from OP. Don't explain yourself to them. You need to preserve your energy for more important things.

As a mother of a young child with ASD the structuring of the day is vital. We had an inkling at 9 months, we started therapy at 2 and ASD was confirmed at 3. It was no big surprise for DS to be diagnosed with ASD. Well it turns out DD1, now aged 6, is looking likely to also have ASD. She has her evaluation in January. I've coped by working and having very very structured routines. I highly recommend your DH set a daily routine that is very structured with set sleep and feeding times. Use melatonin to get him to sleep. Speak to your doctor to get the prescription.

I am happy to share our daily routine if it would help your OH plan his day with the DC.

Want2bSupermum · 29/10/2017 01:01

What ever you do I would not recommend going PT for your studies. If anything ask if they can give you an accelerated program so you can start earning ASAP.

PartOstrich · 29/10/2017 01:02

This reply has been deleted

Message withdrawn at poster's request.

originalusernamefail · 29/10/2017 01:06

@permatiredmum another one queuing up for your insight Hmm. My DS1 is none verbal with ASC right up to his diagnosis 'experts' / friends / family were telling me he was just a "lazy boy" and given a few weeks or months he would snap out of it. By the time it became clear that was not the case DS2 was well on his way, how irresponsible of me! Personally I don't think parents of NT children can complain about being permatired - you can't have it that hard (jk). OP people can't understand because they haven't lived it. The amount of people who think I could 'fix' DS1 if I just parented properly is astounding to me.

My DH and I manage to work full ti,e but only because we have jobs where shift work is possible (compressed hours) and because my Dparents are incredibly supportive and able to provide flexible childcare, otherwise we'd be fucked.

originalusernamefail · 29/10/2017 01:06

@permatiredmum another one queuing up for your insight Hmm. My DS1 is none verbal with ASC right up to his diagnosis 'experts' / friends / family were telling me he was just a "lazy boy" and given a few weeks or months he would snap out of it. By the time it became clear that was not the case DS2 was well on his way, how irresponsible of me! Personally I don't think parents of NT children can complain about being permatired - you can't have it that hard (jk). OP people can't understand because they haven't lived it. The amount of people who think I could 'fix' DS1 if I just parented properly is astounding to me.

My DH and I manage to work full ti,e but only because we have jobs where shift work is possible (compressed hours) and because my Dparents are incredibly supportive and able to provide flexible childcare, otherwise we'd be fucked.

originalusernamefail · 29/10/2017 01:06

@permatiredmum another one queuing up for your insight Hmm. My DS1 is none verbal with ASC right up to his diagnosis 'experts' / friends / family were telling me he was just a "lazy boy" and given a few weeks or months he would snap out of it. By the time it became clear that was not the case DS2 was well on his way, how irresponsible of me! Personally I don't think parents of NT children can complain about being permatired - you can't have it that hard (jk). OP people can't understand because they haven't lived it. The amount of people who think I could 'fix' DS1 if I just parented properly is astounding to me.

My DH and I manage to work full ti,e but only because we have jobs where shift work is possible (compressed hours) and because my Dparents are incredibly supportive and able to provide flexible childcare, otherwise we'd be fucked.

originalusernamefail · 29/10/2017 01:07

Wait so long for one post to load then 3 come at once Blush sorry OP

bialystockandbloom · 29/10/2017 01:11

OP have you been in the SN boards here? Def worth looking at, everyone there been in the same boat.

I started ABA therapy (very gently) with my ds at the same age - it was probably the saving of us all at that stage as we basically started learning how to help ds learn how to communicate, to function, and taught us how to help him.

It will get better.

bialystockandbloom · 29/10/2017 01:13

permatired just fuck off. Yours is probably the most spiteful, nastiest post I’ve ever seen.

ScipioAfricanus · 29/10/2017 01:22

Ignore any horrid comments. My DSis has had stuck for continuing to work when she has a DD with similar extent of autism (though less destructive to the house, it is still extensive at times and the constant having to guard her and her sibling at all times). Apparently DSis should be at home (getting more government support as she isn’t entitled to much at the moment except DLA) and not at part time work ‘expecting’ help with either end of school day. Even though one of the reasons she works is to earn money to secure her DD’s future better.

Anyway, all I have to say (as others much more knowledgeable) is that things did get better for my DSis when DN started school. The holidays are hard (limited play scheme places) but it is so much better now she has some time on her own with the younger sibling two days a week. I’m not minimising how tough it is for her as I have so much admiration, but just want to reassure you that a similar age was tough and things have got better since school (special school, not mainstream) started. And send you some Flowers.

ScipioAfricanus · 29/10/2017 01:22

Has had stick not stuck.

usernameinfinito · 29/10/2017 01:30

Do not feed the troll. OP I can understand how you feel. It is exhausting. I hope once your child is in school things get easier for you all. I understand what you said about feeling like no one cares. It's also hard to see people complaining about things NT children do. Do whatever makes your life easier at the moment. Flowers

Qvar · 29/10/2017 01:34

Permatiredmum, I’m assuming you’re on drugs, as literally nothing else explains your behaviour tonight

OP, 2 - 6 was the hardest age for us. Has he been medicated at all? Melatonin was helpful. If he will wear ear guards they might reduce his aggression at preschool. Destructive whirlwind behaviour is often sensory seeking behaviour - will he have a bath? Shaving foam with dry rice is absorbing, as is play doh with glitter and lavender oil. Big chunks of wood and foam in the garden, maybe obtain a trampoline if possible. Ds1 found the sea soothing at this age, throwing stones and shouting at it.

bettythebutterfly · 29/10/2017 02:03

Permatiredmum, have a Biscuit. My first ever. Your comment brought me to tears.

OP. Thinking of you. My daughter also has an ASD diagnosis. Some days are bloody hard.

Thermowoman · 29/10/2017 02:18

What kind of a nasty bitch do you have to be to come on a thread and tell a struggling mum of disabled children that they don't have it that bad, and they have no business having more kids! Seriously, that is one of the worst things I have read on here! Permatiredmum you should be ashamed of yourself, ever heard of empathy?