Literally can’t cope anymore

[TastingTheRainbow]

I know IABU but I’m so so fed up and just can’t cope anymore with my son’s behaviour during lockdown. It’s driving me insane! He’s a 6 foot 2 severely autistic 16 year old.

Imagine a 6 foot toddler, compete with temper tantrums except they are bigger and stronger than you. There is no help, no services, nothing. He turns 16, becomes an adult and suddenly it’s off you fuck.

It’s the sheer expense of it today that has really depressed me. Been making the most of lockdown and decided to do the garden. Make it a nice usable family space and after 3 weeks of back braking work and nearly £500 spent its finished. Looks amazing. Today is the first day the kids have been allowed to play in it as the work is complete.

The end of the day and my new sun lounger has been ripped right across the seat, he accidentally put his foot through it. Now unusable. The garden storage box is smashed, he fell onto it running races. Now unusable. The cherry tree I planted has been snapped across the truck, he tried to catch a bird and knocked it over.

I don’t know why I bother! Feel like it’s pointless trying to have a nice house or nice things as he ruins it faster than I can replace it. We’re living in a house with ripped sofas, wallpaper ripped off walls, holes in walls, bannister ripped off the stairs etc. and it’s just not fair on the other children living in this absolute shit tip but what do I do? The bannister was off the wall THE FIRST FUCKING DAY I moved into my brand new house.

Anyway this rant achieves nothing and there is no solution but sometimes you just need to rant and there’s no one else I can do this to in real life.

[hfrdgftcsdg]

Sorry to hear this. You’re a friggin trooper. I have a friend in a similar situation and lock down is killing her. I hope this is over ASAP for you. Can you access any day services for him when things are back up and running?

[hfrdgftcsdg]

Sorry just re read thread. Do you mean nothing available pre lock down too? Do you have any help at all? A social worker? Or have you tried autism groups on Facebook for tips off other Mums about how to access services / help?

[highmarkingsnowbile]

I hear you! No, there's really NO support out there that is practical.

[MsYamada]

Hi, in a very similar situation here, DS is 19 and breaks everything, sometimes by accident, sometimes deliberately. Not that we ever get any help anyway but we got desperate and tried social workers etc and there is nothing running or open at the moment. Our only hope is a couple of days at college before the summer holidays. Not going to get my hopes up though.

[TastingTheRainbow]

@hfrdgftcsdg Even pre-lock down there is nothing. He went to a special needs school with after school clubs and occasional overnight respite but he’s now left so that support is gone.

The paediatric team discharged him as he turned 16 not that they did much except weigh and measure him every couple of months.

His social worker said he doesn’t meet the criteria for most of the support as he’s in a home with a parent that can meet his needs and most of the support is reserved for those with additional financial / mental health issues. They did offer respite, he went once had a meltdown and begged never to go again as he thought I’d abandoned him. He has HUGE anxiety over being abandoned. If I spend too long in the bath he’s at the door knocking and shouting me.

The speech therapist discharged him a few years back and basically said that’s the best your ever going to get. So they basically gave up. Never mind that 90% of his behaviour comes from his inability to communicate and be understood, why bother continuing to try and resolve that!

There is Facebook support groups etc. and it’s good to speak to people in similar situations but practically it doesn’t help. As well meaning and supportive as these other mums are when I’m wrestling a child that’s bigger and stronger than me into the car or out the supermarket as he’s having a meltdown they can’t be there, at those times there is no one.

When he was younger we were inundated with support, groups, play schemes, support workers etc. now he’s an “adult” and that’s it, time to get on with it. It’s like these support services don’t quite understand that autistic children become autistic adults.

What do we do then? We’ve been trying to find some kind of education for him, after all legally he should be in education until he is 18. Guess how many special needs college’s or 6th forms exist in my county? NONE! Not one place he can go to continue to his education! So what other options are there? An apprenticeship? Who would hire him? Who would work alongside someone that will physically attack you if you upset him? At school he was on a 3:1 rota, 3 fully trained specialist members of staff at all time’s to deal with him. Yet at home it’s acceptable that it’s just me.

[TAKESNOSHITSHIRLEY]

im the same,hes 15 same height and about 10 nd half stone

i also have a 5ft 3 9 y old who 135 pounds so adult size as well
both need 24/7 care and neither sleep we also home educate so are literally with the kids 24 hours

we have never got any help from anywhere though so are used to just being left to it

do you claim dla, pip?as tbh thats what that money should cover

we go through ear defenders and head phones like water as they always seem to get broken

[Chociefish]

Hi, I didn't want to read and run💐. My dd2 is ASC and has a slightly menacing streak when she's feeling the pressure. She's only 5 and already hurts when she hits but the mum in me makes me sit there and take it until she calms. I hope you get some help soon, and you are totally entitled to a massive rant💐

[PhoenixIsFlying]

I really feel for you. I volunteer once a month at an adult support group for adults with autism. I have seen lots of young adults come in looking for some sort of group to join. It’s shocking the lack of support for young adults with autism. My daughter is on the spectrum and destroyed everything when she was younger. I completely understand that feeling of thinking you can’t have anything nice. I really feel for you and seeing all your hard work destroyed. I have no suggestions but tons of empathy. Bless you xxx

[TastingTheRainbow]

Thank you and sorry to those of you that are going through similar situations. The lack of support for adults with complex needs really is abysmal in this country sadly. I worry greatly for his future.

[birdling]

I am in awe of you.
When I feel like complaining about my kids, I will try to think of people battling in your situation and count myself very lucky indeed.
I run community choirs and we do concerts in aid of local charities. I think groups for young adults with SEN are a good choice to benefit from our concerts. I will look into it.

[GhostCurry]

Jesus that sounds tough. I’m so sorry OP.

[BlueSuffragette]

Can your GP not offer support of any kind to protect your own mental health? Is there no prospect of any respite?

[LEELULUMPKIN]

Did the School he went to not have a 6th form OP? My DS is 15 and very similar to your DS.

We were offered a place for him at school during all of this as DH is a key worker however I have been able to cope having him here.

My DS will be at his SEN school until he is 19. Maybe it is worth looking into whether there is a SEN school with that provision near by.

[LEELULUMPKIN]

Sorry, just re-read your thread (only just got up after battling with my DS until 04:30am) ignore what I said re sixth form.

It's an utter disgrace that there is such a postcode lottery when it comes to services like this.

[Rhodri]

I have a profoundly disabled relative who receives family care at home. The state basically said (prior to Covid19) they don’t have the resources to provide home based care so either the family has to cope or she has to go into a home where staff can control her behaviour and provide for her needs. I imagine OP has been given the same choice. In the long run this may be the only solution for my relative due to the detrimental effect on other family members.

[TastingTheRainbow]

@Rhodri Yep exactly the same. I asked how long I was expected to ‘cope’ and what the long term plan was in terms of support etc. and was told he could potentially move to a specialist home. It makes no sense that they won’t support people in this situation to care for their own family when it will cost far far more to accommodate them in a home.

@LEELULUMPKIN It really is a postcode lottery. He went to school 50 minutes away from home as there was no special school closer that could take him. Loads of options for primary but very few secondary. Even the one that he went to in the end was a behavioural unit and not an autism unit as that wasn’t available, so he has spent the last few years being managed as a child behaving badly for whatever reason rather than an autistic child that isn’t able to control his reactions. We actually moved house when he was 12 to be in the catchment area of a school ran by the national autistic society hoping this would help but they refused his admission, said they were more catered for Asperger’s rather than low functioning autism. Wish they told us that before we moved but until we were in the area they wouldn’t even look at his EHCP to tell us our chances.

[GhostCurry]

That thing about the school is such a shame! Hope you are coping ok OP

[Knittedfairies]

The transition from child to adult is like falling off a cliff when you have a child with SEN. I was where you are now, complete with damaged house. My son went to a residential college; it was hard work to get him there - I think I spent months on the phone. Have a look here and see if there is anything there. It's bloody hard to get the funding though. Good luck OP.

[SilverLiningSearching]

Would a SEN solicitor be able to fight your case with LA for services/ residential schools outside your area if they they are none locally?
I have a 10 year old DS with ASD and he is already very strong and we have a house full of broken things, I don’t bother getting anything nice for the house anymore.