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 feel what you are going through, literally every word.
I have a 2 year old DD is is currently being evaluated for autism. I’m certain she will be diagnosed in time as I also have a 14 year old DS with asd, so recognise many of her challenging behaviours and extreme communication difficulties.
I also have a 4 year old NT dd who is incredibly sociable so wants to attend every party/event/show in the area.as a family this is causing me and dh to have to do separate things often.

We also have many support services coming in but they seem to evaluate, write forms then wait 6 months or so I remember the same situation with ds.

One of the hardest things having children with autism is the isolation that you feel. You often feel that nobody cares or understands, but I also think that people don’t really know how they could help unless you asked directly. This is what I’ve found.

I know how hard things are, and that you never get to switch off. There are so many little things that make life so much harder, sometimes it helps just to have a little rant, I would love a support group in my area but unfortunately there’s nothing local. I did attend one briefly when ds was small and it was fantastic.

Going by my experience with ds I can say that it gets so much easier as our dc get older. My ds is very caring and lovely, we just need to respect his need for space, alone time and time to stim (he runs for hours in the garden).

I think the hardest time for us was between the ages of 2-6
I think it helps sometimes knowing that you are not alone in feeling the way you do

Have you contacted any charities? National Austistic Society has local branches and they usually run groups and trips out. It's a lot easier to be with parents who understand!
If you google autism groups and your area things such should come up. Have you got a local Carers centre?
I work with parent Carers, and also have a son with additional needs, the people who understand best and I / other Carers see most, are other parents in the same position x

Know just what you mean about totally unhelpful attitudes from others. Most people seem to a) be interested until they realise they can't change or 'save' your DC and finally 'get' the scale of the challenge, and then lose interest/conveniently distance themselves, or b) make it all about themselves, as your DM has done.

Sorry for the crude comparison but for me it's like when someone is having difficulty opening a jar, people say 'oh give it here' thinking they can do better, realise they can't, and walk away to do something more interesting leaving person still with an unopened jar. Obviously on a 100x more complex and emotionally blindsiding level.

Fuck off Permatiredmum. Jesus.

What a disgusting vile disablist post permatired

@permatiredmum DH did work full time until I started uni and it became impossible. He still does freelance when he can.
And I fell pregnant with DS2 before DS1 was placed on the pathway. We had no idea how severe DS1's problems would be. Extremely unfair and archaic view you have.

Permatiredmum your post is unhelpful and insensitive. OP needs support not judgmental people like you coming on here and being nasty.

When ds1 was small I read a really annoying novel about autism. Can’t remember what it was called but it had a fantastic line in it (made it worth reading despite being annoying) which was about the sort of response to give comments similar to the one permatired has just made. It was spoken by the love interest and was basically that if people haven’t experienced the more affected end of the autism spectrum they have no right to an opinion about it.

I found it helpful when people really weren’t getting it.

OP, you need to ask or your thread to be moved to Special Needs, then you won't get shitty posters like Permatiredmum

Still shocks me that parents of children with SN are somehow expected to cope, when parents of NT children of similar age get sympathy when things get difficult.
We're not parenting saints

@springhappy it definitely does help, thank you.
So many people just seem to 'have it all together' and I feel so shitty. We can't have anybody round to the house as DS has a complete meltdown, we can't even let someone read the meter without an appointment. It's so isolating at times.

To all who have suggested a cleaner, I'm going to look into it. I think it's time to maybe admit I can't do it all, and housework is definitely something I need help with right now 💖

OP you dh can claim carers allowance if he isn't already. If you get tax credits make sure they know about the dla as well.

@permatiredmum

with the 27 month age gap, DS2 was born before DS1 was diagnosed. I got pregnant when health visitor was still saying there probably isn't a problem that more socialising wouldn't fix.

Don't be a dick.

Hang on in there OP. Sounds like you’re doing all the right things and it WILL get easier as he gets older and you get things like EHCP and school in place. Do you get any support from local charities? Barnardo’s have been a godsend for us. I’ve heard others sing the praises of NAS. The provision is slightly different in different areas, but definitely worth looking into. If you’re in North London look into Kith and Kids - incredible charity and will also offer support to DS2 when they’re older.

permatired - have a word with yourself! Sheesh.

@MyDcAreMarvel we do claim carers allowance as DH's income is so unreliable, it barely covers the internet bill some months.
At the moment, we're sort of muddling through with money and it's thankfully not too much of an issue as we live quite frugally anyway. The big expenses such as house repairs can come at a bit of a shock, but we manage. We're hoping that DH can learn to drive soon as that'll open up a whole new world. Even being able to drive to the big field a few miles away where it's safe for DS to run around would be a life saver on bad days

DFO @permatiredmum you'd say the same to me then? I had 2 and was 7 months with twins when my DS2 was diagnosed. Should have put the twins up for adoption or something.

It was bloody exhausting, and DS2 went to a special needs pre-school for a few mornings a week. When he wasn't there he was trashing the house.

Keep on pushing for an EHCP OP, and don't be fobbed off with mainstream if you think he won't cope.

My DS2 is 15 now and has thrived at his excellent special school.

with the 27 month age gap, DS2 was born before DS1 was diagnosed
No she suspected her DS1 was autistic when he was 9 months old , so that would be 18 months before DS2 was born.
OP Do you get benefits? How is nursery for the 15 m old paid for?

Fuck me Permatiredmum! You need a reality check, you have no ducking idea, most people I know with children with special needs only one of them works because of the amount of work that involves, I fact I am one of the few couples I know where both work and I manage 3 days a week, god knows how, since Jan I have only had 3 days off without some sort of meeting or medical appointment or two on them, I have used annual leave for these as well, one son has been out of school since Feb, the past 3 nights and have been up until 6am, 4:50 am and 3:45am with a child who has had his max dose of sleep medication and becomes more and more violent the tireder he becomes and then guess what I have to get up at 6:15 for my other son who also had autism and ADHD.

OP find some support groups they have honestly saved my sanity, I have made some amazing friends we even managed to go out on occasion.

Occasionally we do blitzes of each others homes, drop children off at school go round, spend 2 hours talking and cleaning and hostess makes bacon butties and tea.
Last year I put a post up because my son managed to learn to ride a bike he is still wobbly but OMG I was on cloud nine. They understood what a huge deal this was.
I just let life wash over us and lived amongst a sea of broken shit, I learnt to buy second hand and not get good stuff.

Has your health visitor referred you to anyone ? Portage ?

Nursery should be able to apply for top up funding. Disabled social services should be helping with support and respite.

Also just want to add that having a NT child in between two SN children does come with problems but also opens up lots of opportunities for loving sibling relationships.
Older ds loves his nt sister and she is very accepting of his ‘unique ways’

You don’t need to justify having more children to anybody. Sibling love is fantastic and in my experience very helpful.

I understand how hard it is having people coming into the house. Ds stays in his room until they leave :) dd actually growls at them! This happens with everyone, close family too.
I’ve learnt to just ‘go with it’ we find it easier when it’s just us but can’t/would stop people visiting, we just stop inviting them so much.

I understand. My 3 year old DS is very similar. If left unsupervised he will pick at and eat the plaster off the walls, draw on the walls and himself, turn on the cooker, flood the bathroom, strip naked and pee on everything etc etc. He needs loads of exercise or he won't sleep. If I want him to go anywhere (to the changing mat, to bed, to sit at the table etc) I have to carry him. He has been at sn preschool for 3 hours every weekday morning since September. It's been great but 1/2 term has been a nightmare and we haven't been able to leave the house. I have 4 other dc but they are older and at school. We are just starting the process of autism assessment. I've known since he was 4 months old something wasn't right.

If you get dla then the nursery are able to claim an extra £615 per year as a one off payment, think it's called Disability Access Funding.

If you need any advice re applying for an ehcp please pm me, I'm a SENCO.

Permatiredmum stop spouting offensive disabilist bullshit

Seriously, permatired, wtf?

Beaming you supportive thoughts OP, and I hope the thread stays useful. Maybe do get it moved.