If you have a child with autism, do you always handle the meltdowns with patience?

[LetMeBee]

After 13 years, I’m struggling with compassion fatigue. I don’t feel like a great parent right now. Other mothers appear to handle it much better than me.

How does everyone else manage? Are you always calm, understanding and patient?

Both of mine have (mildish) autism and no, honestly I’ve lost my temper on more than one occasion over the years - they’re now 11 and 15. It’s very hard to know sometimes what’s autism/to be made allowances for and what is just bad behaviour. I should add that I’m also autistic so do have a fairly reasonable understanding! I try so hard to emphasise, keep calm etc but sometimes I lose it - I’m human, so are you, be kind to yourself 💐💐💐💐

As I sat on the loo with DD 17 years, outside shouting at me yesterday..no I told her to shut up...go away.
(Paraphrasing 🤦🏻‍♀️)
The emotional load (Single mum) is too much at times....luckily when things calm we can talk it through. Bit OPife is hard enough without giving yourself a hard time..we are all human! You sound very caring💐

My DS2 has ADHD and so do I so I definitely do not handle things calmly!
But, I do calm down quite quickly and quicker than DH, because I at least can understand how he's feeling and why. It's hard work OP. The fact that you worry about it shows how much you care

Thank you for posting this today..

I lost it this morning, have appologised to my son and tried to pull the day back.

He has adhd and asd.. sometimes as a single parent with no support at all i drop all my balls i am juggling..

I did one of the lovely parenting courses through camhs .. i did say there.i am a human too with feelings, I have no not one other human that knows / can push my buttons like he can. I have worked with adults with severe challenging behaviour in the past so i know it is because it is more personal.

No. I do not always respond with patience. In fact a couple of months ago I went batshit crazy, took my passport and left home for 24 hours. I told DH that he had to step up to the fucking plate then I booked into a premier inn and cried my eyes out.

That was a bad day.

@lollipoprainbow

So the next time my dd is shouting, screaming, swearing and lashing out at me ill just pretend she's having an asthma attack 🤔

My DS also has asthma. I can say that when he has an attack he is not usually trying to strangle me, which is his go to method when melting down. Currently he small enough for me to fight off. When he hits puberty in a year or so that may well be different.

Joining the thread just to add support OP. My asd son has screamed at me many times today about how I'm a terrible mother, he hates me (I know he doesn't) and he wants to chop my head off. Some days I can zen through the screaming, some days I don't. People who have NT children have some challenges but don't realise the constant level we're at I suspect. It's exhausting. Keep strong!!!

Fuck I needed to read this after today. No diagnosis yet, but DC8 definitely has well-masked to outsiders ASD, and bloody hilariously I am an SEN teacher dealing with extremely challenging behaviour at work, where I am ice-cool, calm and understanding at all times. At home...there is shouting. Solidarity to all and thanks for sharing.

It's the aggression to her sibling I really struggle to deal with.

We are only human, it’s not always easy to remain calm and it’s not always easy to be patient. My dc are older teens, youngest has more meltdowns than the eldest although the eldest knows how to annoy me. I try my best to remain calm, to help them but there are times when I just can’t do that, we can only do our best and sometimes it’s bloody hard.

No I don't. It's hard sometimes.

Not always, but after 3 sons with autism, youngest being 16, I learnt to predict them and do my best to avoid situations. Lucky as youngest got a place in too asd school. He's had a bespoke eduction plan that has worked turned a non verbal violent 8 year old that no school would entertain, into a different child. So much support, this should be for every autistic child. I used too cry myself to sleep with worry.

Comparing to other disabilities is relevant in so far as the behaviours children with autism display are because of their autism and are in no way their fault just as it is not the fault of a child who is blind that they can't see, or the fault of a child who is paraplegic that they can't walk.

It does not mean it doesn't come with its own set of challenges that are unique to the child. It does. And it can be very hard sometimes to meet their needs. I know I have often felt over the years that I'm not good enough and if I could be a better parent, a better person, I could somehow have helped them more. But you can only do your best. You can't beat yourself up about it

to everyone here. The solidarity has definitely made me feel so much better.

Tomorrow is another day and I’m going to try again to hold it together when the screaming starts. On a positive note, our neighbours are up early for the school runs just like us, so it won’t be as horrific as the 6am rude awakening they received today.

If it's any help, my adult son reminded me the other day about the Christmas Eve when he and his sister didn't sleep at all and at 5 o'clock in the morning I told them that when Father Christmas dropped off the presents I was going to set them on fire 😀 (the presents, not the children!)

Sorry, I laughed at that. I've also threatened the Christmas presents in a less than stellar moment.

Dd is in her late teens, isn't diagnosed yet and maybe never, she's under CAMHS. We've been lucky in some ways, she's improved, she no longer hits, bites or pushes, she used to frighten me, I have screamed back and pushed her away. I hate the throwing stuff though, I can't afford to replace things and I hate the things she says sometimes. But generally now I can walk away, sometimes to cry, she no longer follows me screaming stuff - that is the biggest relief and is the biggest reason I now manage not to react.

I am much, much better than I used to be, but it’s impossible as an actual human being who’s treading on eggshells for years on end and to not loose your shit occasionally.

DD is 20 now, so while she has way less meltdowns than she used to, they do still happen. This weekend she had a massive one and ran off which scared me (she was fine!). But she said some things and really upset me afterwards, and I was just done. I left her with DH and walked for a while to get myself together. It’s so hard and lonely to support a child with autism, when she was at school we had a lot of support but there isn’t any now.

As to coping with the meltdowns, I think it’s easier when you get to know what her triggers are. So DD’s triggers are noise, temperature (too cold or too hot), unusual movement - the dog moving constantly for example, some smells and she finds transitions really hard. So waking up, going between lessons, even getting out of the car to school was hard - you can imagine what exams were like!

We’ve both gotten pretty good at spotting them just before they happen or have potential to set her off and she adjusts accordingly. So waking up can take an hour - she has a quiet alarm, 15 mins later I’ll pop in with a cuppa, and she’ll adjust to the temperature and being awake. Sounds ridiculous but it works.

If we are at the shops or out she can pop her headphones on to kill the noise. If she can’t cope at all she just leaves and goes to the car, or a different room if we are at home if visiting friends.

Do you know what her triggers are? Can she tell you? Sending hugs, it’s very hard

Nope! I can handle a lot but when he targets his younger siblings it's really triggering for me and I do shout. Sometimes, very occasionally, I see red and properly scream in rage. I always feel terrible afterwards and apologise. If I know there is going to be a difficult day I take CBD oil and it really helps, I wish I could afford it every day, because sometimes a meltdown is totally random. And yes my DS's meltdowns are violent at times, of course I wouldn't shout at him if he was having an epileptic fit but I do if he throws a chair towards my toddler.

@Archepsych dear god you've got more on your plate than anyone should have to handle!

I certainly didn't handle the meltdowns well. Getting better by the year, but he's had a lot of help from the local version of social services and he is far better at recognising his own triggers.

@PinkyU

I think it helps to think of it as; would you be annoyed or impatient if your asthmatic child was struggling to breathe or if your epileptic child had a seizure?

That's different though as they might die (and it's short lived).

My DD has ADHD and her concentration span is tiny and it's very, very annoying. I'm usually very patient, but occasionally not.

No I don’t.

I try bloody hard but I’m human. I also have adhd and can hit the wall quite hard myself. I’m lucky that ds isn’t violent. I worked for a time with dc who were and while I could manage to respond calmly under pressure in a professional setting, it’s very, very different when you’re not clocking off at 4pm.

But I’m not convinced that it’s entirely a bad thing for ds. He’s aware that his behaviour does affect others. He’s learned a lot about repairing and rebuilding relationships. He has experienced pulling his horns in and discovered that he has more control over himself than either of us thought. We’ve learned together to identify early signs of emotional dysregulation.

To be fair, I’m really talking about dysregulated stress outbursts here and anger. True meltdowns are a different kettle of fish and thankfully rare these days. Then his distress is palpable and he sort of shuts down and goes inward. That is a lot more like the epileptic/asthmatic comparison. When that happens I’m as concerned as I would be in any other medical emergency. But I’m lucky that he doesn’t scream or lash out in that state so he’s not triggering my ANS responses.

We all do the best we can.

Yesterday evening, DS5 hurled himself at me and ripped out my hair, and bit my hand when I tried to stop him.

This evening the minute I walked in from work his face lit up, and he jumped on me with kisses and bear hugs, and didn’t stop until I put him to bed.

It does all turn around. Sometimes you want to run away and never look back, and then other days they remind you just how much you love them.

I wouldnt cope. I'd walk out and leave them to SS. It sounds so so hard.

@PinkyU has given good advice, I don't think it was meant as judgmental. Reframing has helped me massively. That's not to say I don't have (many) days when I wish I'd done things differently, but I'm getting better and my son is happier as a result. On the surface, his behaviour can seem horrible, spiteful & it is triggering - but I always tell myself he's completely dysregulated and in crisis, what changes can I make to his environment to help him and always, always - this isn't his fault! He has such low self esteem, I need to be the one who doesn't judge him on his words/actions because I know others will. Don't feel bad for the times that don't go well, but also don't give up trying to be better. Any breaks, rest or recovery if possible, help us be calmer and more patient. Listening to Autistic adult voices also really helps make sense of it all.

Also - I know I might be stating the obvious & I know it's easier said than done! But... if meltdowns are frequent then changes need to be made to daily routine & expectations. Some autistic kids are exhausted and potentially traumatised as a result of trying to cope in a world not designed for them. They need time to rest and recover too.

The highs and lows - very well put