He's pushing me to the edge. I can't live like this anymore, any advice?

[FairyAndLavender]

DS is almost 3.

He's completely non verbal and doesn't understand basic instructions or a simple sentence such as 'Would you like a biscuit?' doesn't know how to get his shoes, etc.

Overall he's extremely happy but he's exhausting. From very early in the morning he hits 1000 miles an hour. Up jumping about, emptying draws, generally just ruining something before you have a chance to stop him from the last thing he's ruined. Doesn't understand 'time out' and laughs if you're stern with him He doesn't play with toys, doesn't understand imaginative play. Will just about empty and pack away the same pack of bricks, despite spending a LOT of money on different toys to interest him.

He hits, scratches me. Pulls all of my hair. I'm so fed up.

I know toddlers and young children are hard work but I can't even put a bit of telly on for him to watch whilst I sit for 5 minutes. 5 fucking minutes.

I'm 22 and it seems very clear that my life is completely over as it seems he will need constant care for the foreseeable.

My only respite was constantly getting out and about. Seeing people. But often now people can't see us anymore as they are fed up of DS, they don't say so but I know.

And to top it all off, in the last 4 weeks he won't sit in his car seat. Just gets out. Takes off the straps. I've bought a strap to help keep him in but he still gets out!

So here I am, trapped in with this all day. Can't really get out as it isn't really safe. Can't take a nice walk because he Hates it and will refuse. He will happily run the other way if you say 'I'm going then, bye'. He won't even protest. He just walks back into the direction of home within 2 minutes, literally, of coming out.

I'm so so so fed up. I feel like I'm going to have a nervous break down. Is this normal to feel like this?

Can't potty train him, he has no understanding at all and constantly tries to touch his own poo

I feel like I can't cope. But I can't leave. I look at him and feel like crying when he's sleeping. I love him beyond words but I'm so dead inside lately from it all. It's constant

He's broken so many things like a washing machine. A lot of the time you just can't stop him in time unless you're physically and literally helicopter over him 24/7, literally literally literally

Random Sorry, hope you don't think I was aiming my!!! At you It was at my impossibly difficult son...

Of whom I love very much but I often want to run away from... Then return again for a cuddle for myself. I think I'd probably have topped myself long ago if I didn't have a sense of humour. Sounds morbid I know, but I think there's a lot of truth in it.

He always comes first but selfishly (and I think fairly), I do wonder what on earth My life will end up looking like now. I do an okay sort of job, pays considerably well. But I wanted to retrain at some point completely. Don't think that'll ever happen now.

Nothing is ever just about me anymore, and it probably never will be, even as he gets a lot older. It's a hard pill to swallow at 22. I never felt young but I do now. Baby stage was a breeze and I felt like super mum. Until he started showing signs of autism around age 1. I questioned myself. It then just became a living nightmare at times.

The question of 'Who am I as Tracey, not as Mum?' never seems like it'll be answered now

FYI I'm not really a Tracey, I wanted to be when I was a child lol

Nothing is ever just about me anymore, and it probably never will be, even as he gets a lot older. It's a hard pill to swallow at 22. I never felt young but I do now.

Just to say I do know parenting full stop is hard. But it just seems there's a definite extra layer of 'you can't do that now' when your child has special needs. There doesn't seem to be any gradual but certain independence as they age, at least not the same as a child with no issues

Send him to nursery, use your new payments to fund it or use his free hours. You need time away from your child, you need time for yourself, you sound absolutely done in.
I'm so sorry you're going through this. It must be all consuming, day in day out. But there is no miracle cure. Respite is your answer

Just an idea, do you think the endless trips and activities he doesn't enjoy, might be over-stimulating him in a way he finds very uncomfortable and stressful? Maybe what he needs is to be in a familiar, calm , quiet place, settled routine, same people. .

You sound exactly like me, even down to the ages.

I was you, 16 years ago. Not seeing a future for me and ds who just wasn't able to engage.

He's 19 now and I have an amazing son, I adore him. But it's taken hard work to get here. And some extremely stressful times.

Regarding the destroying things your ds doesn't know how to play, so he's going to fiddle. If he's pulling drawers out I'd devise a game with him where he tips his toys out and throws back into the box. It's good, repetitive play and a surprising amount of verbalising will go on when doing stuff like this.

I found DS responded far better to music than speech. So I'd sing words and tap out or clap phrases as I spoke. Very, very short sentences. I used to keep his most treasured item on a hook, high up in the room so he'd have to react to get it. This would be rewarded and he soon made the link between a verbal response and getting the thing he wants. This was a massive turning point and at aged 5 he started to speak. Now at 19 he's very verbal. He reads fluently and has no problems in those area. Yes, he needs a lot of support but the son I have now is one I just didn't think was possible all those years ago.

Have a look around your area and final your local branch of NAS or parent carer service. They can help with all sorts. I think you need to point out to your child's father that this is the child you have, no he can't be sent back because he isn't the one he wanted and his choice is to either step up or leave. You'll probably find life a lot easier without a whining man child bleating down your ear.

Yeah i think you need to stop with the activities. Why are you putting him through it if he doesn't enjoy it? I think you need to focus on parenting the child you have rather than the one you wish you have. If he enjoys pulling things off shelves, why not move all precious things above his head height and put lots of interesting things for him to get at within his reach? Look at the things he does enjoy doing and work with him rather than against him.

And get yout DH to step the fuck up.

Activities I'd knock right on the head.

I used to be guilty of this too, buying him toys I thought he should be playing with thinking he'd magically start acting like other kids and forcing experiences onto him.

Just stop it all. It doesn't work and is detrimental for your child. There will be local services available, we used to have things like chatterbox group which was for kids struggling with speech and other small groups. Ask (( demand)) your health visitor to point you in the right direction. She should be telling you about the early bird course which is an early intervention programme for parents of children who have just come into the system. These groups were more for me than my son because they put me in contact with people having identical struggles. Not feeling alone gave me a massive boost and I'm still friends with those people I met as a clueless, very pissed off 22 year old to this day.

And regarding going out if he doesn't have a pair of ear defenders then invest in a pair.

The trick is to plonk them on when things are a bit busy so he gets the immediate benefit and wants to wear them. These were a huge game changer for us. It's good to push things like shopping, but be realistic. Make trips short, straight in and out. My son was about 8 when he could manage a full supermarket shop. He'll tolerate shopping now but certainly can't manage hours trudging round shops. He just can't cope with it.

First of all hugs, I've been there - admittedly it's a long time ago as my dd is an adult. She was as you describe your son, I was at the end of my tether but thankfully I got her into a special ed preschool programme 20 hours a week which meant I could recharge my batteries. I wasn't in the uk at the time and programmes vary however social services are able to help you navigate the options.

But don't loose hope that things won't change though, my dd finally got language at 4, potty trained at 5 (night time was 9) and is at university now. Autism is very varied in outcomes but many are able to be mainstream educated with support once they gain the life skills they need like speech. Even social skills are gained, my dd is just perhaps 5 years behind her peers eg at 21 she's starting to show interest in the opposite sex, there's no set pattern

He's a bloody nightmare. He absolutely insists on tipping it all out and expects me to refill it again.

OK, in the nicest possible way... stop with the "bloody nightmare" and reframe his behaviour in your own head. Know that he cannot help it right now. So use it. Get a smaller tub, let him tip it out. Refill it. Encourage him to tip it into another tub... do it yourself, see if he copies. He loves water... then use that in his play.

Chopping and changing activities in the hope he will enjoy one is fruitless, and just over stimulating him and wearing you out.

The eye contact thing is hard, I get that... I talk to dd and she will glance at best, but otherwise I am talking to the top of her head (she often looks down) as eye contact can be very hard for people with asd.

You're 22? I didn't see that before... You are doing amazingly! I am 47 and sometimes I cannot cope with my asd girl! It's taken me several years to understand her and know what she needs, because there are hundreds of books on autism, but also hundreds of ways autism presents, you just have to find the things that work for you.

Remember, to him you are his world. He loves you so much. He just can't tell you yet.

@FairyAndLavender don't worry I didn't think you were having a go. Just clutching at straws of things you may not have tried yet. Now I'm think mud kitchen???

My heart goes out to you, parenting is hard, parenting a child with the difficulties you currently have is just exhausting, the uphill battle to get a suitable nursery place etc 😭

Hi OP. Not much I can say to help, but you sound like you're doing an amazing job! And feel free to call him a bloody nightmare in your head if you need to - it sounds like you're a very loving mum and not showing your frustrations to him at all. I hope you get the help you both need soon. I was wondering if a car seat with a shield instead of straps might help? I have no experience of them, but I imagine they're much harder to wriggle out of (also, not all extras for seats with straps are safe/ legal I believe).

Yeah i think you need to stop with the activities. Why are you putting him through it if he doesn't enjoy it? I think you need to focus on parenting the child you have rather than the one you wish you have. If he enjoys pulling things off shelves, why not move all precious things above his head height and put lots of interesting things for him to get at within his reach? Look at the things he does enjoy doing and work with him rather than against him.

It isn't necessarily anything precious, but lots of things are breakable if you try hard enough and my son does. I can't remove absolutely everything I own out of reach. He can open locks etc, he's crafty. I am trying to work with him. I'm not shocking him into a different day out or activity every minute of every day. It's weekly, sometimes far less weather dependent. Apart from swimming which I do a lot with him because he's clearly so so happy there

And get yout DH to step the fuck up

I can't make him. There's nothing else I can really do. The ball is firmly in his court but it isn't happening. He walked out this morning. DS, like always, was acting wild from the moment he opens his eyes. He won't just have a bit of breakfast and play. He's up and bouncing, banging on walls. H was furious, said the neighbours will hear! He wasn't settling at all and H said I either go out with DS or he's going out. So I said fine, leave. And he did. He was back before we went to my mums, but I feel annoyed sitting here, knowing he's relaxing at home whilst I struggle on with DS in someone else's house (thankfully he's playing with water outside and I'm sitting here outside. There's a huge pool he's taking water from and chucking to the floor).

Activities I'd knock right on the head.

I used to be guilty of this too, buying him toys I thought he should be playing with thinking he'd magically start acting like other kids and forcing experiences onto him.

Just stop it all. It doesn't work and is detrimental for your child. There will be local services available, we used to have things like chatterbox group which was for kids struggling with speech and other small groups. Ask (( demand)) your health visitor to point you in the right direction. She should be telling you about the early bird course which is an early intervention programme for parents of children who have just come into the system. These groups were more for me than my son because they put me in contact with people having identical struggles. Not feeling alone gave me a massive boost and I'm still friends with those people I met as a clueless, very pissed off 22 year old to this day.
Bookmark

Today 11:45WhatWouldYouDoWhatWouldJesusDo

And regarding going out if he doesn't have a pair of ear defenders then invest in a pair.

The trick is to plonk them on when things are a bit busy so he gets the immediate benefit and wants to wear them. These were a huge game changer for us. It's good to push things like shopping, but be realistic. Make trips short, straight in and out. My son was about 8 when he could manage a full supermarket shop. He'll tolerate shopping now but certainly can't manage hours trudging round shops. He just can't cope with it.
Bookmark

Today 12:19minnieok

First of all hugs, I've been there - admittedly it's a long time ago as my dd is an adult. She was as you describe your son, I was at the end of my tether but thankfully I got her into a special ed preschool programme 20 hours a week which meant I could recharge my batteries. I wasn't in the uk at the time and programmes vary however social services are able to help you navigate the options.

But don't loose hope that things won't change though, my dd finally got language at 4, potty trained at 5 (night time was 9) and is at university now. Autism is very varied in outcomes but many are able to be mainstream educated with support once they gain the life skills they need like speech. Even social skills are gained, my dd is just perhaps 5 years behind her peers eg at 21 she's starting to show interest in the opposite sex, there's no set pattern
Bookmark

Today 13:06differentnameforthis

He's a bloody nightmare. He absolutely insists on tipping it all out and expects me to refill it again.

OK, in the nicest possible way... stop with the "bloody nightmare" and reframe his behaviour in your own head. Know that he cannot help it right now. So use it. Get a smaller tub, let him tip it out. Refill it. Encourage him to tip it into another tub... do it yourself, see if he copies. He loves water... then use that in his play.

Chopping and changing activities in the hope he will enjoy one is fruitless, and just over stimulating him and wearing you out.

The eye contact thing is hard, I get that... I talk to dd and she will glance at best, but otherwise I am talking to the top of her head (she often looks down) as eye contact can be very hard for people with asd.

You're 22? I didn't see that before... You are doing amazingly! I am 47 and sometimes I cannot cope with my asd girl! It's taken me several years to understand her and know what she needs, because there are hundreds of books on autism, but also hundreds of ways autism presents, you just have to find the things that work for you.

flowers Remember, to him you are his world. He loves you so much. He just can't tell you yet.
Bookmark

Today 13:08RandomMess

@FairyAndLavender don't worry I didn't think you were having a go. Just clutching at straws of things you may not have tried yet. Now I'm think mud kitchen???

My heart goes out to you, parenting is hard, parenting a child with the difficulties you currently have is just exhausting, the uphill battle to get a suitable nursery place etc 😭
Bookmark

ADVERTISEMENT

Today 13:25Letmegetthisrightasawoman

Hi OP. Not much I can say to help, but you sound like you're doing an amazing job! And feel free to call him a bloody nightmare in your head if you need to - it sounds like you're a very loving mum and not showing your frustrations to him at all. I hope you get the help you both need soon. I was wondering if a car seat with a shield instead of straps might help? I have no experience of them, but I imagine they're much harder to wriggle out of (also, not all extras for seats with straps are safe/ legal I believe). flowers
Bookmark

FirstPrev
2
NextLast2

Username
FairyAndLavender

Comment
Type your message here

Sorry, not sure why I copied and pasted the entire page there!

You sound like a fabulous Mum OP, you really do but from what I understand you're very overwhelmed and need some downtime. I would definitely take the advice given by PP. Look after yourself.

I have a severely Autistic non verbal ten year. Old ,whilst I'm sure posters are trying to be helpful suggesting respite ,it's bloody hard to get even the smallest amount ,my son's always been at a special school and things did improve once he started school behaviour wise and sleep wise ,I would start looking for support groups in your local area ,in my town we have several charities that organise activities,day trips etc for disabled e,it's also good to meet other parents,who get it .

Disabled children*

Has anyone tried any signing with your ds?

Backtoschool Yes but briefly, just the one session at Salt. But nothing since lockdown. We have a Web chat with Salt in mid September. Looking forward to some more suggestions but they seemed quite frustrated and confused when I said picture exchange hasn't worked yet

My son used PECS ,but he didn't get it at 3 ,more at around 6 or 7 .

Sorry, but by PECS I mean object exchange. Our Salt said pictures would be too advanced and that's the next step up from object exchange?

I recently read an article about a man on a plane communicating in a specific way to an autistic boy. Apparently the transformation in his behaviour in even such a short time as a flight was astounding..
Will try and seek out the article..

Ah yes ,they did all this at D's special school and he moved on to True object By Image ,"TOBI" and finally PECS what are the plans for his education? Unfortunately COVID happened and lots of services have been unavailable ,but hopefully things will start moving more now .

Augmentative and alternative communication..
It's symbol based..

@FairyAndLavender theres some good advice in this thread, please seek out some advice on how to set routine and a sensory diet for your little one. he sounds very full on and draining for you but believe me it does get better. lots of us have been there. if you are near me in sw london/surrey id happily take him for you for a few hours twice a week or so (im a registered childminder btw) but i also think getting him back into nursery will be good for both of you xx