What is the point?

[Dazedandconfused28]

I'm in crisis - I am probably about to say some awful things.

My DS3 has just had his official ASD diagnosis. His behaviours are deteriorating- he's constantly stimming, ripping everything in sight, chewing through clothes, head banging & hitting himself. We pay OT, speech therapy & ABA - pls don't judge.

I've taken masses of time off work to attend his appointments, when he can't cope at nursery etc.

He's on melatonin, but has horrendous stretches of no sleep.

It's my birthday & we have taken the day off to go for lunch. It's the last day of holiday I have left & I can't afford any more time unpaid. I'm already underperforming at a job I was once good at & took pride in. I have booked a clean of our flat in the morning, as it's been a pit for months.

DS has been awake since 11pm, throwing himself at the wall, I'm in bed with him & he's bitten my face, it's drawn blood so will look awful. I'm exhausted, he's exhausted & I know he won't cope at nursery tomorrow.

I don't know why I look forward to anything any more. I don't think I've experienced joy in anything in 2 years. My whole existence is now his care, and there is no success in it - just paediatricians explaining to me how limited his life will be, as though I'm an idiot who can't already see this.

We will be charged for the clean & late cancellation of lunch. I just cant do this any more. It's so stupid- but I've been building up to this, it's been keeping me going. My eyes are stinging I'm so tired & I feel ill with exhaustion. I keep thinking DS will be better off getting my life insurance so it can go towards his care. I'm not going to do anything stupid, I just feel dread at how our life is deteriorating & our future looks so bleak.

I'm sorry I've posted here, but get few responses in SN section x

You aren't alone. I know it feels like it but I've been there. Still am to an extent but a little further down the line with 7yo DS diagnosed around same age. Many of same behaviours and tried all the same therapies and melatonin etc after lack of sleep was breaking us.

Short term. You need that break. If you can I would get him out the house and let the cleaning happen. It will make things more bearable at home. Does he like the car? Are you or DP (you mentioned we) safe to drive tiredness wise? When things got really bad with DS I used to just take him out and drive around in circles for hours as it calmed him. Would nursery let him sleep on a beanbag in a corner if you send him in regardless. Ours did if he had an awful night. It's your birthday, were you meant to go with DP or friends for lunch? Could that person watch him and you just go get a break yourself for birthday for an hour or two. If you don't want to eat alone (I would with a book!) take a walk or anything you enjoy just to get some headspace. Masks and sunglasses are a godsend for covering up if you are worried about face.

It took a few more years but we ended up making a lot of drastic changes lifestyle and work wise - I know what you mean about career but I've come to terms with that not mattering so much any more. Life isn't what I expected but there are other joys. It sounds like your DS is really struggling and that is heartbreaking for you but until you can get some rest and respite you won't be able to see a way forward.

Not sure my post is very helpful but I didn't want to read and run as it's all too familiar of how things have felt for me xx

Oh gosh I can’t even imagine how difficult this is for you. You sound so strong but like you’re at breaking point (I would have broken a long time ago, to give testament to your strength).
I was going to write exactly the same as the pp suggested, is there any way you could get him out and about just so the flat can be cleaned. That might make a little difference into making you feel marginally happier? Would he sleep in pram or car? Or would that be more hassle than it’s worth, especially on such little rest? Even if he could just go to nursery for an hour or two just so you get a little respite? That means it won’t be so full on for him but means you get a little break. I don’t know if that’d be a possibility?

Mum had my twin siblings and they both had severe learning difficulties and I remember one social worker telling her she needs to look after herself first as you can’t give from an empty pot…saying how if you’re on a plane you’d need to put your own mask on before helping anyone else. SO much easier said than done, I know. Especially with little to no sleep.

I really feel for you, I honestly do. Life can be really shit sometimes. Sending you a big birthday cuddle and I hope someone else more experienced than me can come along and give some assurance and advice to you.

Thank you for your kindness. I need some kind words. I cannot imagine enjoying my life again

OP, I'm so sorry that you are going through this and I agree with the words of PPs.

I'm wondering whether you might get some support from Early Help. You can self refer and they might be able to offer some form of weekly respite for you and signpost you to groups etc... that may be of practical help to you.

All good wishes to you.

Thank you - I haven't heard of Early Years, but i will check - we are under Portage, & in the process of getting an EHCP, also under the care of our local Autism outreach team - but trying to get support is like piecing together a complex puzzle - nothing is joined up. I be am trying to live hour by hour at the moment. I sat for 15 minutes this morning & had a coffee, trying very, very hard to appreciate moments

Hi OP, did you both sleep a little better last night? How was your birthday?

Try knocking the ABA on the head immediately, you might even notice a difference after.

It sounds like you need respite desperately. It only comes if you make yourself a squeaky wheel. But it's worth it.

@TyphooMary

Try knocking the ABA on the head immediately, you might even notice a difference after.

It sounds like you need respite desperately. It only comes if you make yourself a squeaky wheel. But it's worth it.

The only problem is that this is the only intervention he has shown any signs of enjoying. Speech therapy has been disastrous & he is extremely demand avoidant during sessions. He won't engage in floortime. I've researched ABA extensively so am aware of the controversy - but my experience doesn't reflect what I read. During his sessions he does engage and runs to cuddle his tutor. I attend all his sessions so can ensure they are ethical - they are far less demanding than speech therapy & have encouraged us to focus on the fun, as opposed to forcing him to respond with words he doesn't have. I am probably wrong, but I don't want to give up the only therapy he enjoys.

@Aussiegirl123456

Hi OP, did you both sleep a little better last night? How was your birthday?

Thank you for checking in, we didn't go for lunch, but my husband took DS for a few hours so I could sleep. Last night was better, disrupted, but I got a few hours. I'm trying to just do one day at a time - but the anxiety about everything is overwhelming

I know this is late. I hope things are bearable at the moment, but I know they may not be and you should never feel pressured to pretend otherwise. You shouldn't have to live under the strain you describe. I understand the catch 22 of being too overwhelmed to know how to solve the issues. I've heard the bad stuff about ABA - my laywoman's opinion is that, done well, it clearly works for many. It offers very immediate, consistent and clear signals, it's positive stimulation as opposed to the negative self stimming of headbanging, hurting you and destroying stuff. When you have the energy try demanding a proper Carer's assessment from the Local Authority, and see your GP on your own - really let rip about the worst days and how it makes you feel. Even if you've already gone through this, keep demanding the help you need until you get it. Consider a residential ABA school. The NHS & LA have a duty of care to all of you. Get your MP, local Carer's & Autism charities onside, go to the local paper & use social media if you have to. It makes me so angry that parents feel they have to hide how bad things are & struggle in impossible circumstances without proper help. You and your child deserve better. Respite would be a start, but realistically this could worsen behaviour as it's a change of routine, so for consistency a full time ABA residential placement sounds like it's what you all need. Good luck, you're not alone, you're doing the best you can and it's not your fault it's so hard, even though you probably feel the opposite sometimes. You deserve to be safe and happy. You really do.

I completely disagree with pp. Firstly, sending a child under the age of 11/12 to full time setting will cause immense emotional attachment issues in a child with SEN. So few of these settings exist anyway, because they shouldn't.

It is hard OP. It definitely takes a long time to get to a place of acceptance with it all.

I would be knocking the ABA on the head as it's not an intervention autistic people recommend or speak fondly about. SALT and sensory integration therapy at that age can help immensely.

Once you stop viewing your child as someone who needs to be, or can't be, fixed, your mood will improve.

Try doing less with him. Your schedule for him sounds like torture.

Provide something to chew on. (Perhaps some old chewed clothes as he likes that texture and feed back.) Let him stim. Preventing him Stimming is stopping him self soothing.

Have the occupational therapists given you calming exercises? If not ask for some and do them everyday. guilty of not doing this.

Adjust your thinking. You can't do the same as a neurotypical family, definitely not in the same way. You would not expect a wheelchair user to be able to hike in the Lake District...autism is also a disability he is not going to be able to do the same things a neurotypical child is, at least at the same rate.

Think about his sensory needs. Taking a kid who is sensitive to noise into a noisy cafe is physically painful for them. (Yours may be a sensation seeker though) do you know his sensory profile? What are you going to do to support his sensory needs?

Keeping doing the same thing and expecting a different result is stupid.