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Please make it stop :-(

(30 Posts)
Laubs Mon 23-Jul-18 21:36:59

Make it stop. Someone pass me the wine..... Anything to make the screaming stop. Our life feels completely ruined by one 8 year old high functioning ASD boy. Everything good in our life is ruined. There are literally no good moments... Not in a long time.. he doesn't go to school (He's been expelled and the council can't find him somewhere suitable) he doesn't sleep (pediatrician prescribed meds that do nothing) he won't get up when he needs to, go to bed when he needs to or anything else that involves him being asked to do anything.

You can't have a family meal, go out to a restaurant, play a board game...

There's literally nothing we can do to enjoy life as a family or enjoy our childs company.

His sister gets shouted at just for winding him up, which she does often, and we always feel guilty for shouting but if she doesn't stop it, he goes crazy.

I feel that the light at the end of the tunnel has gone out. I have no family apart from my 80 year old dad who lives with us and doesn't get autism at all and is probably autistic himself as he has no social awareness.

I'm rambling, I know. But I've been unable to eat tonight because the screaming over nothing hasn't stopped in hours and I just think, could I call social services. Could they make it all to away. And then I cry because how can you think that? How can you not love your own child?

I can't cope. He can't cope. Our family can't cope. And there is no god damn help from the council, they don't care that he's not in school and we're struggling.

He said to me when he was expelled from school that he wished he didn't exist. That no other kids have to cope with this.

It was heartbreaking. He can't make friends, just gets picked on and the anger and outbursts just yet longer and more frequent.

Pointless rant just to get it off my chest and make me survive another few hours.

I won't ask if it will get better because I know that it won't. This is my life.

KateGrey Mon 23-Jul-18 21:43:48

Huge hugs. I have two with autism (8 and 5). It’s very very hard. Life isn’t normal and even boring crappy things that are simple to most we cannot do. I reflected today on all the milestones I’ve missed, all the cute kid moments and it’s breaking my heart.

Has he got an ehcp?

What support are you getting and what strategies are in place? He’s not got PDA has he? The strategies tend to be different to how you work with a children with autism.

You sound totally burnt out. I’d ring social services to see what support they can offer and also contact any local Sen charities.

Big hugs. It’s hard when you love your child but you hate how badly autism can affect them x

Laubs Mon 23-Jul-18 21:55:03

They haven't finalized his EHCP because they're trying to find a school. Or stalling. Can't be sure. We fought so long because the school he was in really was awful and they just kept saying he was naughty and ADHD. I told them from day one is was ASD, pediatrician agreed with us very quickly but we're still fighting.

Not sure what hell is available but feel like everyone fobs us off everywhere we go. Everyone seems friendly and genuine, but nothing ever comes of it.

We recently moved house, my jobs stressful, my husband doesn't work because he has spent the last year's in and out of the school until they expelled him and now he's always home. He loves his dad but has no bond with me anymore because I work 50 hours a week to try and keep us out of bankruptcy and a roof over our heads.

He responded well to his play therapy in school. He needs something like that but he's never get up or get ready in time for any appointments anyway so why bother. No idea what PDA is if I'm honest or how to go about getting any additional diagnosis. Once they've ticked that ASD box it's Tata for now, see you in another 6 months to talk about nothing relevant.

Laubs Mon 23-Jul-18 22:16:34

I miss having friends. Our son isnt fun to be around and doesn't react appropriately with other kids. A lot of my old friends I'm too embarrassed to see or meet up with and I'm sure they think I'm a horrible friend who is avoiding them but actually i'd love to have friends. I just can't cope with being a part of their perfect lives or their judgement of mine. So I just don't.

BaronessBlonde Mon 23-Jul-18 22:28:50

Ok- you sound utterly overwhelmed.
So, you need to sort your own head out first.
You and your DH need to do some self-care.
Your friends won't get it- not going to happen.
So what can you do for you (gratitude journal, exercise, meditation, cinema night?)

If (if?) is it definitely high functioning ASD....are there any other conditions e.g. PDA ADHD?

Then, decide what, in your family, is the biggest issue.

So for one family, it might be the poor sleep routines.
In another, it might be interactions with siblings.
In another family, it might be the child pacing.
What one thing would make a difference to you?

JoMalones Mon 23-Jul-18 22:31:11

This sounds so so familiar. Massive glass/ bottle of wine from me. 7 year old, permanently excluded, still waiting paed apt, still undergoing EHCP, I've had to cut back work to one day a week. It's exhausting. He gets to sleep but doesn't stay asleep.

Just to say you aren't alone. PM if you ever need to rant or rave.

MrsMozart Mon 23-Jul-18 22:32:01

I've no useful words. Can only send you a handhold lass.

Littleredboat Mon 23-Jul-18 22:44:40

Do you both stay in every night? Don’t. One of two nights a week each of you gets out on your own. Take up a hobby, or run, or walk. Get out of the house and get some headspace to think.

Laubs Mon 23-Jul-18 22:49:13

Not sure what's worse, getting to sleep and not staying asleep or not sleeping... J is still awake when I leave for work at 4/5/6 am sometimes... That's even after the medicine they prescribed!!

Laubs Mon 23-Jul-18 22:52:14

We have no babysitter. No money for hobbies. So unless I can sit in the park and cry into my wine on my own 😂 our only comfort is each other and the few moments we can steal to just be in each others company for a few minutes before the interruptions start again.

BaronessBlonde Mon 23-Jul-18 22:55:09

OK so he's very dysregulated and unable to sort himself out for sleeping.
That's whether getting to sleep or staying asleep?

You need rigid bedtime routines.And probably a sensory you know what that is, or have you had any OT?

Littleredboat Mon 23-Jul-18 22:55:25

There’s two of you.

You CAN each go out for a walk on your own.
Try it, what have you got to lose?

Laubs Mon 23-Jul-18 22:58:21

No idea about a sensory diet and his routine is non existent mostly because of my damn shifts. I can work any shifts over a 24hour period. He says he's bored and can't sleep or isn't tired. He has a pressure blanket which helps but he doesn't like using... Because it helps. Sigh

BaronessBlonde Mon 23-Jul-18 23:00:51

The weighted blanket helps?
He doesn't like using he much worse after a good night's sleep?

KosmoKramer Mon 23-Jul-18 23:03:49

Whereabouts are you based?

I only ask because I have been in your position (and am still in it, I guess) but with older children. I'd love to babysit for you so you can have a break. It is so hard and I hear everything that you're saying wine

Laubs Mon 23-Jul-18 23:04:14

There's no such thing as a good night's sleep. Even when we think we cracked it and got him down early.. he still will sleep well past midday if we let him and even trying to wake him up takes hours. The medicine does that, but even if we dont give it, he doesnt get up. If you actually forcibly get him up, the days a right off and life isn't worth living for anyone. Our daughter is always late for school... Only way she's on-time is if we leave him asleep alone in the house. It's a joke. He will sleep right through once he actually sleeps. He used to have night terrors, but thankfully they're backing off now. Not sure we could cope up with them too..

Laubs Mon 23-Jul-18 23:06:50

We're in Kent. Not sure we'd relax leaving him with anyone anymore. His entire school couldn't cope. He made the headteacher cry on more than one occasion!!! He has no danger awareness or stranger danger at all and would go off with anyone.

wheretostart18 Tue 24-Jul-18 19:43:41

I'm so sorry to hear you are going through this thanks wish there was something we could do to help. Do talk about it and rant as much as you need to

BaronessBlonde Tue 24-Jul-18 20:34:44

Ok, not sleeping but "oversleeping" when he does get to sleep properly.

Possibly, hyper vigilant due to sensory processing difficulties.

ASD - where is your ASD intervention team; or does one exist locally?
You sound as if you could do with an OT or Play Therapist who understands the overlap between sensory processing and behaviour and attachment difficulties.

KateGrey Tue 24-Jul-18 20:45:51

Any support groups locally? Get to those to see if they can help with local services you can access. I’d also check the council website and google autism/sen in your area. It’s really hard having children with Sen. I laugh bitterly when people comment how exhausted they are with their quite non challenging NT kids.

Laubs Tue 24-Jul-18 20:47:14

BaronessBlonde You sound like you know way more than we do!!!!

BaronessBlonde Tue 24-Jul-18 21:47:09

Laubs I work in this area but would never assume that I know more than the parents of any particular child.
It's that old saw that "if you know one child with Autism, you know one child with Autism".

If you arrived to my clinic, that's the way that my thinking would lean...but anyone competent in working with children with ASD knows to keep their minds open through the entire process. No one professional has all the answers to ASD.

So, back to the question...where is your ASD team in all of this? It's such a pity for him that his anxiety/sensory issues/fear,fight.flight have led to school exclusion.

Laubs Tue 24-Jul-18 22:22:43

We don't have an ASD team. We see the pead every 6 months, that's it. Otherwise we're on our own. sad

BaronessBlonde Tue 24-Jul-18 22:32:22

Oh I'm sorry!
I feel like I've rubbed salt in a wound...and at the same time, I feel really annoyed for you, and for him. It doesn't have to be like that.

Laubs Tue 24-Jul-18 22:46:06

No, you're giving me information I didn't know which might actually help. What is an ASD team?

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