Toddlers (Inc 1 with ASD) my life is a misery. Is this the reality?

[Icannotdothis2]

Can somebody please tell me whether this is the universal reality for small children (inc those on the spectrum) or whether I have just totally fucking failed.

I cannot do this anymore.

I have two children aged 3 and almost 2, my 3 year old has autism (the PDA profile) and receives as much help as I can access atm which is just SALT, educational psychologist and nursery.

My life is a misery.

I have tried to implement virtually every strategy reccomended for children like DS, to curb the aggression and make him happy/secure.

None of them listen to a word I say. I have zero authority. The eldest hits the youngest several times a day and I can't ensure her safety because neither of them can be left alone and our flat is so small.

They refuse to go to bed until gone 10pm, any attempt to put them down before then results in them screaming like they're being hurt and upsetting my neighbours so I have to take them out again.

My eldest smashes up the flat, whatever he can get his hands on that he can break - he will. He kicks the bin over so the contents spill out onto the floor. My TV is damaged. DH has had a glass candlestick smashed on his head (we no longer have anything smashable around but he will always find something to break)

Constant tantrums and meltdowns i can distinguish between the two btw

My youngest has started to model DS' behaviour in terms of refusing/acting up/trying to rule the roost.

I have no life outside of the stress within these 4 walls.

DH is here and really does his best when he's home but works long hours so 80% of the daily drudgery is down to me, he admits himself that DS is incredibly hard work and he doesn't know how I cope alone during the day.

Please tell me it gets better, I feel so downtrodden I actually feel physically ill most of the time and I'm ashamed to say I've had some very dark thoughts lately (toward myself, never the children)

Not all toddlers/pre school children are like this are they? Is this because I've failed?

Ask for a referral to family early help or the local offer equivalent too. It’s not you failing.

You’re not failing, though I know it feels like it. DS8 has ASD, ADHD and struggles with sensory stuff. He was a horror at home at age 3, violence, meltdowns, not sleeping. I had a newborn at the time too. There are still lots of complexities in that sibling relationship and younger sibling copies but may have ADHD himself. We have come such a long way since that age, but honestly I still feel I fail him every day especially by getting cross about stuff and not really understanding the world from his perspective. It will get better for you, but be prepared that it may always be more difficult than with a typical NT child and give yourself flex/slack for that. Things that helped: child psychologist regular sessions, amazing occupational therapist and developing mini-sensory circuits, melatonin for sleep, trying more positive parenting, support groups/online information, having a plan for each tricky set of behaviours, a calm kit for him to help calm himself from a meltdown (small and sensory toys/items in a pencil case but now he’s older he does a Rubik’s cube or reads a book), realising that not every technique works forever, learning to let some stuff go and picking your battles, dedicated time with him for ten minutes daily away from siblings doing something together where you just focus on him and are led by him, making sure your DH can deal with him too so it doesn’t all fall on you (we are still working on that, the boys often only do stuff when I ask) and both be similar in your approach to dealing with it, there are some good books too such as How to raise a Happy Autistic Child and Toast if only to realise you’re not alone. Sorry if any of that is blindingly obvious - it’s late and I just wanted to recall as much of what I have learned in recent years as I could.

Sending hugs I have 2 little boys with ASD and it’s hard work! My other half is thinking about giving up work to help me care for them. Is that something you can consider?

That sounds very hard.
If you are living in local authority housing I’d ask the Council if there are any options to move into a larger property,preferably a house where there are additional bedrooms and outside space. It’s not safe for your children to share a bedroom. You’ll need some evidence from your G.P, a letter will suffice.

I have two with adhd, asc, pda and gad. The worst years were toddlers-7 ish.

They are still incredibly high needs now, their anxiety is debilitating, our lives are tailored round their needs entirely.

But now they are teenagers they are glorious and I much prefer life now than then. Their humour in particular is awesome and I’ve never liked other humans as much as I like and enjoy my own daughters. Life is still a shit show, but I don’t loath it or live in terror like I did when they were younger.

Have you read the explosive child? That’s the best book to understand this.

OP, my autistic son used to be up until midnight before we have melatonin prescribed - have you talked about sleeping issues with doctor?

Other things that really successfully calmed him when he was having tantrums:

1. Sticking him in the shower - sometimes picking him up and plonking him in
2. Music - my son does wel with music like Beethoven - also handy to help him sleep
3. We used to catch him, restrain him and rock him although I’m sure you’ve tried that too
4. My son needs a lot of exercise - he’s actually a good runner now - does he have the chance for exercise before bed? A wall at 7?

Regarding your daughter, she’s really too young to understand why there might be greater expectations of her than him.

Op my life was a misery with one dc, I think nt... Not entirely sure as a toddler...

I can't image two and one whose not nt.

Unfortunately the crux issue can't be solved but it can be managed and the burden eased in first instance I think your dh need to ask his work to give me break in day where he can give you one..

I've been there ...... mine are now 13 (HF ASD), 11 (Severe ASD and disabilities requiring tube feeding and epilepsy) and 9 ( The 'normal' one who is now being diagnosed with dyslexia..FFS)
It does get better but those meltdowns will always exist when they just can't cope with the sensory output of life!
We have an open dialogue with our kids.....life is tough for them all in different ways. As they get older you lose more control over decisions.

Routine gets us through...... Pictures..... this is what we are doing now and this is what we are doing next. Visual storyboards.
Sort out bedtime routine now!
We used a bath from very early on....it was a good settling down routine...Cbeebies bedtime story, bath..... our own bedtime story..... Make surecall screens are off for at least an hour before bed.
Both our boys have melatonin to sleep now and our disabled boy has Clonidine to sleep too ( nothing works for him!)

I wish you all the best....

@Icannotdothis2. I have twins with ASD with PDA. It is a very different way of life from the norm. Normal parenting doesn't work at all and in fact makes it worse. Our bedtimes were horrific and ended with people getting hurt when we tried to be tough.
Then we met with a great sleep disorder consultant who explained lots to us. We don't get any more sleep now but no one gets hurt, no one is distressed and we are so much more understanding.
Have a look of FB at Yvonne Newbold vcb there will be a whole ton of people who understand what you are going through. I'm happy to chat if you need to.

I really sympathise... I have a Ds with ASD (now 8) and a DD (3) who is being referred for assessment too. It’s very hard work and it’s not quite like ‘normal’ parenting - the strategies that work on NT children don’t always work for ASD, specially if there are communication difficulties. You aren’t failing, you’re probably at the hardest stage, practically, of your children’s development, and for yourself emotionally. There’s a lot to learn and to come to terms with, as well as just the challenges of getting through the day. Be kind to yourself first .

Right, things that might be worth thinking about:

1. The National Autistic Society developed a course called ‘Early bird’, which is for parents of young children newly diagnosed with ASD. Many LAs run and offer it, though I guess it might be online only or postponed at the moment. Ask about it and if your LA doesn’t offer it, contact the NAS and see whether they do any direct access versions (with funding /bursary if necessary - the LA one was free though). It’s a good programme - my DH and I did it over 12 weeks and it really goes into the behavioural stuff quite well. You get to ask questions and share your experience with other parents, and explore some of your specific challenges with experienced social care staff. Really worth it if you can get on it, or

Anything similar that your area might run.

1. There is a saying that ‘all behaviour is communication’. I think that’s not quite true with ASD - there also the sensory needs which massively impact behaviour too - but it is a huge part of the puzzle. You don’t say much about your son’s abilities in that area. Is he verbal? Can he express his needs (verbally or with signing or pointing?). Do you know how well he understands what you say? My son had isolated words but wasn’t able to express himself well, and still has relatively limited language at 8. We had a lot of screeching and meltdowns, which was very challenging. That has got better over time, as his ability to express himself has improved. In the beginning, the use of very simple language, and pictures /symbols helped. He learned some very basic set phrases to describe what he wanted /felt and that helped too. Does your SLT input help with this at all? In my experience some SLTs are excellent but others have much less specific experience of ASD.

On this, even though my DS was able to understand simple spoken language, visuals really helped him. So for instance, a visual timetable at school and home, with symbols for what would happen, really helps to ground him and make him feel safe. As he had some language / understanding, for a long time I underestimated how much this would help him. I wish I’d done it sooner! Likewise, social stories have helped him cope with new situations, events and changes. Ask your SLT about that.

1. Sensory - do you know what makes your son tick? You say puddles, which is a good one as it encourages him to go outside and burn off some energy. Can you focus on building up the sensory input he can access indoors too? It sounds simple but it’s really helped us - my son bounces off the walls at home, literally, but some things really help him. He loves being under a heavy blanket, and also a chair that rocks. And there are some fiddle toys that also help him in less physical moods. He’s been through a Chewing phase so we got him chew toys... you get the idea!

One of his most annoying sensory habits is standing on things - he just has to know what it feels like. We have to keep Temptation out of his way but with a younger sister, there are toys on the floor and some do get squished. Poor DD

1. Challenging behaviour - this is complex so what I’m about to say might not hit the spot for your situation, but I do think that behaviour like hitting comes from a few places: frustration (with communication, in my DS’s case), inability to communicate with you /his sister more constructively, sensory impulses, attention... I find challenging behaviour improves if you can find ways of meeting the needs that underly it, for us, usually communication and sensory. As others have suggested, a simple intervention to hold his arm down and say ‘gentle hands’ will help to teach him, but if you can help him replace that urge with something else, that helps massively. So learning other ways of getting his sister’s attention, or your attention, or other things he can do when he feels frustrated that get that feeling out, like bashing one of those peg toys, or something that provides pressure or vestibular stimulation, whatever he likes. There’s been a lot of trial and error here over the years!

1. Routine. Most ASD kids thrive on routine and if you can use that to your advantage eg with bedtime it will massively help you. Do you follow a routine? For whatever your ‘problem’ parts of the day, you could try getting the kids into a fairly strict routine. For DS he wasn’t too bad at starting bedtime but actually getting him to sleep was hard. We ended up with bath, stories, bed, but with a few specific steps that help calm him (so there’s a music box that we play before we leave the room, we have a coloured light tree on when we do stories, we leave him with a projector on that projects the night sky onto his ceiling....) it all helps a lot, though it does mean if we go anywhere we have to take a lot of stuff with us 😂. At DS’s insistence we’ve also read Stick Man Every. Single. Night. For the last 6 years, without fail. Literally. That’s poor DH’s department though . A visual timetable also helps to establish these routines and to keep the kids on track.

DD is similar with routine, though the challenge with her is that she has a lot of rituals that she ‘needs’ to Complete, which means bedtime takes forever and often steps have to be repeated if not done perfectly. That is driving me demented at the moment, but I’m just focusing on getting the steps right first time and slightly streamlining, where possible. It’s a slow business though 😬

1. Respite. Does DS go to nursery? The free 15 hours starts after 3 but some kids can go from 2 - I think linked to financial deprivation but also, I believe, SN. Have you asked to see whether he can go to nursery at all? You may find that helps with behaviour - giving him structure and also professional input from elsewhere. My DS is so much better when he’s going to school, which he loves (routine!). We’ve struggled a lot more during lockdown and bubble closures.

1. I found reading a few first-person accounts of ASD helped me to understand a little how DS thinks. ‘Why I jump’ is a really good book, and short (you may not have much time or energy to read!) . someone also mentioned ‘how to raise a happy autistic child’ and that’s quite a good read too.

I hope some of this is useful and you don’t feel patronised by this post - I certainly don’t have all the answers and things are not perfect in my family - dS still screams a lot, for example. But we’ve come a long way and I’ve been fortunate to find a few wonderful people who’ve helped me to learn and understand. It’s very difficult to find your way on your own and I am sure lockdown has made all of this much harder for those who are recently diagnosed, especially pre-schoolers.

While things are still quite tricky at times (and covid has been a massive setback for my boy, who is a very anxious child anyway) we do enjoy family life a lot more now. There’s some lovely bits between the challenges, and while my two do set each other off sometimes, they also truly love each other and it makes me so happy to see it.

Good luck, and I hope you find some of your pressures ease soon x

Good morning all, thank you so much for the replies.

I'll try and answer all of the questions, if I miss anything please let me know.

So DS has some basic communication but it is very limited to asking for what he wants, for example:

Want crisps (that's what he wakes me up with every morning)
Want juice
Want bed
Want cookies
Money help (aka mummy help, when he needs my help with something but he can't pronounce mummy)
Take him down (When he wants DH to pick him up and throw him on the sofa, he loves this for the sensory feedback)

I'm not totally sure how much he understands but nursery are under the impression he understands alot.

He does go to nursery for 15 hours per week and has done for the past 6-8 months. He loves going and loves the routine but as he's settled in and gotten comfortable he's began to display the same behaviour there as he does at home IE hitting other children.

The nursery referred us to an educational psychologist and we had a zoom meeting last week. We've put together a plan which includes using a 'now/then' board to help him with transitions, sand timers, a special bean bag and sensory toy he can go to and use when he's stressed.

At home we have a weighted blanket, a nebula star projector, sensory toys, a tent for him to escape into when he needs some quiet time.

I've started to try and help him understand his emotions by explaining what's going on when he reacts to certain things, for example "DS is sad" when he's crying or "DS is angry" when he gets angry, "DS is happy" and so on, he will repeat these things back to me and over time has learned that when "DS is sad" he comes to me and I'll embrace him until he calms down and then he'll say "DS happy" so he appears to be getting that.

Regarding our home, we're in a private rent but could do with something bigger with outside space. We've not been able to access any help from the council as we are adequately housed but we plan to save up and find somewhere bigger in the next 12-24 months. It's going to be a slow process unfortunately.

The SEND VCB project I am familiar with, I watched one of Yvonne's webinars a couple of months ago but it's hard to find the time most days as DS is so full on. I'm going to make a point of escaping for a couple of hours when DH Is home so I can concentrate on watching/accessing resources.

Somebody reccomended a course with the OU called understanding autism and I plan to take that up too when I'm able to.

Regarding DS' bed time I think part of the problem is that he hadn't dropped his day time nap yet despite being 3. I've tried hard to change that by encouraging him to stay awake but he will just sleep wherever he is, if I try to rouse him he'll go into meltdown and hurt himself / us. Melatonin was discussed with his paediatrican last year (he has been on the pathway since before turning 2 because his symptoms have been very profound since he was a baby believe it or not)

Paed wasn't keen on prescribing melatonin unless absolutely nessecary, as much as I would like him to have it, she thinks it's best to work on him dropping his day time nap first.

I'm sitting in the bedroom as I type this and I can hear all hell breaking loose in the living room, he has knocked my DMs tea over, is banging his bricks on the TV and shouting.

I'd better go and help. I'll be back later on.

Thank God DH has booked a weeks holiday starting from tomorrow.

Oh I forgot to add, SALT.

He's just had the first of three sessions via zoom. It was a nightmare and he wouldn't sit and comply, I guessed that would be the case which is why it's a shame he can't be seen in person.

They've given me some techniques to hopefully bring along his speech so I'm using those on a daily basis.

Not sure what will happen after the 3 zoom appointments, whether he'll be discharged (it's via the NHS) or whether they'll keep him on the books to be seen in person post covid.

You're definitely not failing. It sounds like you're doing absolutely everything you can OP. Toddlers are incredibly hard work in normal circumstances never mind a pandemic and particularly since you're dealing with ASD too.

I have a 3 and 4yo. No ASD but my eldest has some sensory issues and can be quite hard work - VERY stubborn. However the past six months or so has seen a major shift away from constant meltdowns and defiance. She still has her moments but it gets easier with every passing year as she mature she and is able to articulate her needs clearer.

From your posts the only thing that I think will make a significant difference is when your DS drops his nap. Hopefully that will happen over the few months and you should find he drops off much earlier at night. It won't make your days easier but at least if you have the evenings to decompress you'll be better rested and will have more reserves to deal with day time.

I really feel for you. It's a tough time for sure but you will have brighter days when they get a little older.

OP, you already have a lot of things in place here which is great, you are not failing. It takes time and 3 is a really difficult age as the ability to communicate verbally is so limited. Can you try doing some simple sensory circuits one or twice in the day? I found they really helped my son at age 4/5 and his school do them daily and they feel like play. Our OT used to make up stories for them sometimes or use stories like We’re going on a Bear Hunt.

All behaviour is communication.

Try to analyse what he is communucating

Does he want tv turned on ?
Using now / next with clear visuals.
Now books
Next tv

PECS to supplement speech