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?

Its normal to lose your cool sometimes, but if you are feeling really ground down and unable to cope I would recommend considering antidepressants. I'm on sertraline because I got to the point where my own behaviour was making my kids behaviour worse. Its been extremely helpful. I'm hoping if I can stay on it for a few months to reset and get the whole family calmer, we'll then manage ok when I come off them.

Also, it's not bad for kids to see that you make mistakes at times, if you apologise afterwards. Both my children apologise when they've had meltdowns and I think they've learnt that from watching me struggle.

Another SEN mum here.

What I’ve found helpful is thinking about their unsavoury behaviour as trying to find where the edge is. How far can they go. I think another analogy is that when you’re on a roller coaster and the bar drops down, everyone pulls at it to see if it will hold them. At least some of the meltdown behaviour I see, is that.

That said, sensory overstimulation is a kicker. The screaming. Jesus, I’ve screamed even louder just to get it to stop.

It is tremendously difficult being a parent of autistic children. Especially if you are autistic or ND yourself.

I have two young autistic children and I have ADHD and am autistic. DH is NT. My children are my absolute world, and when they are calm happy and regulated there is no one I'd rather spend time with. Both of mine have no learning difficulties, are very articulate and doing really well in education (one has full time support under an EHCP). Both mask, massively at school.

However when they have meltdowns - usually as a result of masking at school - it is hellish in our house especially as they set one another off. How I would cope of I was a single parent I do not know, single parents also dealing with this I take my hat off to you.

The vast majority of the time I am able to deal with the screaming, spitting, aggression, violence with a cool head. One, because I know they can't help it and two, because shouting and getting cross categorically makes it worse anyway. They need me to be in control when they're at their most vulnerable, and have no control of their own. However I am only human, I find the noise intolerable (Calmer or Loop earplugs help) and I have been known to raise my voice on occasion.

It also helps to be able to explain once everyone has cooled down that on the occasions that it happens that everyone had needs, and everyone - even grown ups - sometimes gets things wrong or behave in a way that's not perfect and needs to say sorry afterwards.

Solidarity to you all. It's tough. Especially when you're on your third meltdown of the day and someone with NT children says 'oh yeah mine has tantrums too'. If only!

However when they have meltdowns - usually as a result of masking at school - it is hellish in our house especially as they set one another off.

How do you feel about school knowing the toll it takes to fit it? Genuine question with no judgement as I also have an autistic child having to mask in mainstream school. The more I learn the more I fear it's not the right place for him as it much be so hard for him trying to learn in that environment. Outwardly he seems ok though 😕

@humanbeansiskillingeachother

However when they have meltdowns - usually as a result of masking at school - it is hellish in our house especially as they set one another off.

How do you feel about school knowing the toll it takes to fit it? Genuine question with no judgement as I also have an autistic child having to mask in mainstream school. The more I learn the more I fear it's not the right place for him as it much be so hard for him trying to learn in that environment. Outwardly he seems ok though 😕

Honestly I am battling with the school about it. Totally being 'that parent'. I hate it, especially being autistic with ADHD myself dealing with this - I could sign my life away in unplanned 'quick chats' without sufficient processing time but needs must.

Their view, despite her EHCP is 'shes fine' if she's not being disruptive (which she never, ever is at school) and I think her needs are also hidden by the fact that there are several children in her class (who as yet are undiagnosed and don't have EHCPs) who have extremely challenging behaviour and are much harder work than she is. It's a mainstream primary and to be quite frankly they are totally unused to dealing with this level of need in the class overall. It's unprecedented for them.

But I know she's not fine and I'm in there at least weekly talking about things they can/should be doing to help her, explaining her anxiety cues, pointing out specifics in the EHCP etc etc.

I'm getting there slowly. My other child also masks too but she isn't in distress like my eldest (she is in EYFS though so the demands are much much less).

Sounds so similar to us @watchtheglitterdustswirl 😔 although we're only just at the point of applying for an EHCP ('he's not that behind' 🙄). With high school 2 years away I finally said I'd do it with or without them. It's so hard isn't it. I'm definitely 'that parent' - always asking about things that probably seem irrelevant or messaging saying he's had a good/bad morning because of how it affects him. To be fair they are really trying and I think starting to get it now. Just don't know what to do for the best though. Feels so fragile like it could all start to go wrong at any moment.

@humanbeansiskillingeachother

Sounds so similar to us *@watchtheglitterdustswirl* 😔 although we're only just at the point of applying for an EHCP ('he's not that behind' 🙄). With high school 2 years away I finally said I'd do it with or without them. It's so hard isn't it. I'm definitely 'that parent' - always asking about things that probably seem irrelevant or messaging saying he's had a good/bad morning because of how it affects him. To be fair they are really trying and I think starting to get it now. Just don't know what to do for the best though. Feels so fragile like it could all start to go wrong at any moment.

It's so hard isn't it.

Mine is younger than yours, (six) and I keep getting told that 'all children have tantrums after school in year one, they're tired and it's normal!'

It is not a tantrum, it is an autistic meltdown and it's not normal for a six year old to do it for HOURS nearly every single day after school. Thanks for your useless opinion though.^^

I know quite a few parents of Autistic/ADHD/ODD/Anxious children. I don't know any who are always calm, always react the right way, never get upset from meltdowns, or violence. I have seen parents reach breaking point in support groups. I know friends who have ND children that are struggling. I am completely exhausted mentally and physically, it's hard to react the right way when you have nothing left.

@MazzleDazzle give yourself the permission to walk away sometimes, walk away outside "in the public realm" as such, so you can escape. Please. 1 every 5 times say?