I can't do this anymore

[Syvko]

NC because I feel so ashamed.

I feel so at my end. I just want to be the best mum for my 6 year old who has autism (diagnosed last week) but I can't.

I hate that I'm wallowing in this rather than just working on improving myself but I don't know how to. Sat here crying.

I find it so hard for us to get anywhere to do anything. Transitions into anything is impossible. Even if its somewhere he wants to go, it takes us so long to go and it always feels so traumatic.

Bedtime is impossible. For 6 years we have tried sticking to a routine there but it's not working for him. Idk how to improve it and neither does he, he just says he wants to stay awake all the time.

I ask him, how I can help him, and he replies by saying not forcing him to go places or do things he doesn't want to do. But everytime we go to a place he said he doesn't want to, he always has fun there and says he is glad he went.

But I am doing wrong? I just don't know.

This weekend has been so hard. DH is working night shifts so I'm essentially solo parenting DS1 and DS2.

We have been given this diagnosis and just told to look stuff up online for help.

I'm dreading the return to school. It's always so hard getting him there and i just know it's going to be even harder having had 6 weeks off and starting in a new year group with new teachers (multiple teachers as they work part time so share a class).

I know routine and structure is meant to be key, isn't it. But I have ADHD and I'm so useless at it, I'm failing him as I can't even regulate myself.

I don’t know how to help you OP, but I just wanted to give you a hand hold 💐

Are you formally diagnosed and medicated? That might need to be dealt with, it might help you start to be able to cope moving forward.

I can't advise on having a ND child but can you get a meeting with school SENCO? they may be able to signpost you to online groups etc, as well as putting plans in place for your child.

Don’t want to read and run. DS (3) sounds similar to yours. No advice, only solidarity.
he drives me round the bend a lot of the time with transition resistance.
it is exhausting parenting him - even though the ASD doesn’t co present with additional SEN or disabilities etc. It is still so intense. The intensity of the emotions (both positive- which comes with obsessional kissing and hugging and squeezing) and negative (meltdowns, hitting, screaming, weeing in the floor), the intensity of the resistance to transition (and on a bad day anything will be experienced as transition) , the intensity of the obsessional interests.
i love DS beyond all measure. I do also find myself very jealous of parents who have kids that don’t have ASD - they all seem so much less exhausted. We’re meant to say “we wouldn’t change them for the world” but truthfully there are quite a lot of days when I would turn the volume down at least. I am worn out by mothering him.

You need to get him into ot. They will help with routines and transitions. Sounds like he has an element of demand avoidance, which is why he doesn't like to be told he has to do things . Ot will help with that too.

@CocoPlum I am formally diagnosed but currently unmedicated as i pregnant (I feel so much guilt about that too, this is such a wanted and loved baby but I feel so guilty about having another when I can't cope with one of my children already). I hope the SENCO will be more supportive now he is diagnosed, they haven't been great previously, instead they kept calling us in telling us how naughty he was and how he didn't need their input (as I had previously asked for their support as I thought he may have ADHD like me as we are very similar on sensory things). Head teacher ended up telling me he is naughty because he clearly doesn't have any access to crafting supplies or books at home, which she said also explained why he couldn't talk yet (of course he has all these things at home, he has his own crafting station and he loves reading).

Hi OP so sorry you're having such a hard time at the moment. I work in a supportive role for families with children who have ASD.

Are you involved in any team for support? ASD is considered a disability so you can get help from your children's disability team

Id also recommend becoming involved with a parent support group

Unfortunately sleep disorders are common in children with ASD.

What sort of breaks are you having? Do you have extended family who could help one night a week?

I hear you @Syvko. Your son sound a lot like my 8yo, who is demand avoidant (I definitely recommend looking up demand avoidance and low demand parenting) and would spend his life never leaving the house if he could.

I’m a bit further down the road than you, so I’ve got to a place of acceptance. It’s quite freeing to throw off neurotypical expectations of what family life is supposed to look like. My son is well able to articulate exactly why he doesn’t want to do XYZ - it sounds like yours is too! - so it’s actually really hard to reason with him and bargain with him. I pretty much always lose.

Having said all that, do I frequently wish my life was easier and I could manage to get him out of the house to run errands, enjoy day trips and go on holiday? Of course. It’s bloody hard.

I’m AuDHD too, so routine and organisation is a shitshow. Sympathies!

Thank you @LazJaz - I know I would change him, I feel bad for saying that, but it would mean less pain for him as well as me. I can see how distraught he gets over things.

He is forever telling me he hates himself, hates his life and how he never believes he is happy.

@romdowa How do I get that help? I feel so left in the dark.

I had asked the social for help start of the year, they came round a few times but ended up not passing on any useful advice, just told us we are great parents and doing all we can already.

Your gp would be able to refer for ot. There's a massive waiting list in some areas. I ended up getting a private ot for my 2 year old and it's worked wonders already in 2 months.

I feel very ashamed of this @Delamo - I no longer have any breaks but last year I split from DH as I wanted to escape DS2. I found it all so much easier when DH had him half a week and I had him the other half. But ofc I love DH and I'm very lucky he took me back when he released I was just broken. We have no breaks, no one really wants to look after him because of his meltdowns and lack of sleep.

He does have demand avoidance @Jellycats4life - it's something that the psychiatric doctor picked up on last week in the schools report. Spotted he isn't naughty, just avoids demands. So do I just have to accept we won't be going out as much? It's so hard as DS1 always moans he is bored at home but u can't get him to leave the house either unless it's a camping trip but we can't suddenly move to the woods, can we? (Although maybe it would all be easier)

Thank you @romdowa I shall ask DH to make an appointment and start looking into private ones too.

Thank you everyone btw, you have all calmed me down already. Just needed people to talk to about this as my family and friends really don't understand

My son moans and moans that he’s bored, but equally will refuse every single suggestion (toy, game, activity) I suggest. He would refuse absolutely everything I suggest on principle. And yet still moans about how bored he is.

@Syvko

I was so sorry to read this:
“He is forever telling me he hates himself, hates his life and how he never believes he is happy.”

how heart breaking for him and for you. One of my brothers is PDA ASD, and started to exhibit signs of this self hatred early too. I think it’s quite a common part of the PDA cluster.
In the 90s we didn’t know as much as we know now, and I can see that great work is being done on the basis of new research to support children, adults and families facing these issues, that would have made such a difference to my brother if it had been available when he was younger.

There is a lot of useful information here: https://www.pdasociety.org.uk/#:~:text=PDA%20(Pathological%20Demand%20Avoidance)%20is,features'%20of%20a%20PDA%20profile.

thinking of you all xxx

look up autism charities for children, depending on your area you may be able to get hands on support through an autism specific support group, either for a break or coping strategies or meeting other parents in the same boat

Thank you @LazJaz I shall have a read. I'm hoping I just feel overwhelmed as it's all still so early and new. I am hopeful that I can adapt and be better for him.

Didn't want to read and run. It's tough not having support and it's really tough having a kid that just doesn't sleep, want to sleep or even seem to need to sleep.
We've had melatonin suggested to us, which we're considering.
I want to tell you it gets better, much better if you can get rid of the idea of the stereotypical life that most neurotypical people have.
Low demand parenting is pretty good. I have 3 v different ND children and I'm AuDHD. What we do works for us, and I don't really care to hear anyone's judgement on how we prefer to live in a world that isn't set up for us!
Another book to consider ; "differently wired" by Deborah Reber and "parenting required" by Danielle punter and. Charlotte chaney

What is AuDHD - autism + adhd?

Yep, that's the one. It's not a formal term.