My facebook page is usually a place of laughter where I regularly take the mickey out of our unique lives and offer an insight into what an altered life looks like. I’m mindful not to just show the magical moments because every life has both joy and heartache and I want others to see the struggles as well as the triumphs. I posted this status on 11th August, all about the heart ache of an autism meltdown.
‘Tonight’s melt down was the worst in a very long time. We all went out for a meal with our groom-to-be friend on the eve of his wedding. Harry was fab but wanted me to cuddle him after we’d eaten. Thirty mins later and I knew it wasn’t going to end well. He started to kick out. I had to ask our friends to stand back. He wouldn’t let me move him or stand up, instead he wrapped his arm around my neck and pulled me towards him harder. He started to cry and then it quickly escalated into a scream. People stared. I ignored them. I’d have probably stared too wondering if someone was pulling that poor boys arms off! It certainly sounded like it. He went rigid across me but kicked out at Andrew as he tried to pick him up. After a few minutes he picked him off me but Harry went ballistic, screaming and hitting himself. We tried to get him to the car but had to put him down twice. He threw himself back onto the concrete and Andrew lay his hand under Harry’s head to stop him from hurting himself. Still Harry screamed. Oliver was flustered and apologising to the other diners and drinkers but one guy simply smiled and said “no need to say sorry mate. It’s ok”. I’d thank him if I could. Somewhere in the chaos Harry lost a shoe and pulled the other one off which he threw. (Thanks to the guy who retrieved them and brought them to us with a warm smile and an understandably look of pity). It took us 10 minutes to get him into the car and his melt down continued all the way home as he pummelled the back seat, kicked the windows, screamed & smacked himself. He calmed as we got closer to home as I knew he would and when we walked in, he smiled, his face red and blotchy covered in tears and snot and said “ok gorgeous”. We were exhausted and worried about him but even then Harry can melt your heart. Normal service resumed just as quickly as he had descended into his distress. He can’t tell me why. I’ll never know.
I wonder sometimes how I’ll handle those moments as he gets bigger and stronger. But for tonight I cuddled my boy. Told him that I loved him and agreed that he was gorgeous. Now for bed. Tomorrow is another day x’
As always, the support was amazing and one of my facebook friends asked a brilliant question. She said “Let me ask you a question…if I was sat in the restaurant (and didn’t know you) and saw that happening I would want to try and help. In that situation would an offer of help from a stranger be of any use?”
WOW! I loved this question but I realised that the answer would be very different for each person and so while I offered my own opinion, I turned to the wonderful SEND (Special Educational Needs and Disability) blogging community of which I am part and asked for their opinions and experiences too. This is what they said and where you can find them if you’d like to follow their blogs (which are all incredible – you can pay me later ladies. Preferably in cheese!)
My personal opinion – For me, I wouldn’t want people trying to physically help with Harry as he can hurt others without knowing and I’d feel a bit like people thought I couldn’t cope. But ensuring we have space, picking up anything scattered, talking to Oliver etc would help. And just hearing “I’ll help if I can” would make all the difference.
Laura at www.mumoam.co.uk
I was in Starbucks the other day and there was a lady in a wheelchair she must have been about 24/30 and she was having a meltdown and screaming at the top of her voice. It was deafening. Everyone was staring and tutting the staff were giggling and the guy with her (not 100% sure it was her dad but seemed like it) was visibly stressed and embarrassed. He looked as if he was going to have a breakdown and no matter what he did she just got louder and louder. I got my coffee and went over to him and simply said what I’d want someone to say to me “you’re doing an amazing job”. He immediately smiled and relaxed which made the girl relax and stop screaming. Sometimes you don’t need help as such you just need to know you’re doing ok.
Miriam at Www.faithmummy.wordpress.com
I live like this. I live in a very heightened state constantly with two children on the spectrum. My son screams everywhere.
If anyone could do anything to help from a strangers point of view it would be to protect us by getting us space. Sometimes people just get too close and it endangers them and my child.
Also just to reassure me that someone thinks ok of me. I get so much judgement that I end up assuming even silence is judgement so someone asking ‘is there anything I can do to help’ or just saying ‘I have been there too’ or simply ‘you are doing good’.
Laura at www.brodymeandgdd.com
We were at the dentist this week and Brody was screeching and trying to tip his chair over in the waiting room. People just stared. I’d have killed for a smile. Just made me want to disappear. People don’t realise that simple things make such a bloody huge difference to how we all feel. X
Tina at www.mothergeek.co.uk
It depends if I’m alone. If I’ve got both kids with me then an extra pair of hands to keep an eye on my daughter while I try to help my son would be amazing, but if I’m on my own, there’s not really much anyone can do. A sympathetic smile or a friendly word is always welcome though and I’d never be mean if anyone asked. Maybe I’d need help with bags or unlocking the car so something similar.
Steph at www.stephstwogirls.co.uk
I guess everyone is different… For my girl, what she absolutely needs when at that point is space and nobody talking to her at all. So I try not to say anything, or very little, and hope that other follow my cues and not that they think I’m being rubbish! Personally I’d rather not have a stranger’s help 9 times out of 10, I’d rather just be ignored 🙂 because there’s a real danger they would make things worse. I guess I’d go with just a nice smile to show understanding and not judgment.
Sarah at www.hadleysheroes.co.uk
My son had a huge meltdown (sensory overload) when he went to watch his beloved football team play (Southampton). He was so anxious he was almost vomiting. A complete stranger (I think he was a member of staff) came over, distracted him and offered him lots of free chocolate bars. Now food possibly not the best option given the gagging, but the point is he came over and started a conversation to break the cycle and try to help me. He started chatting about football and who he wanted to win. It really helped and I was just so grateful that somebody could see I was finding it impossible to calm him and that was making me more stressed and him worse and that we were bordering on leaving and he would have missed seeing the game – which he loved once he had calmed down. In our case, it didn’t matter if what the guy did was right or wrong in managing his anxiety. The fact he tried meant a lot to me and saved the day.
Jodie at Autismwithlotsofloveandaffection
There was once a young mum in Aldi – she was paying for her shopping and her boy who was about 5-6 was in a pushchair and visibly distressed his screaming and shouting go worse and she just carried on despite the looks and stares and comments and tuts. I went over to her and asked if she needed any help which she declined and when she walked past me relieved she’d finished I said “you’re doing an amazing job well done”
She said “it’s hard – he’s autistic”
I said I know, I have a daughter like this and I could tell that wasn’t any normally child tantrum
She looked so relieved and said to me
“Ah so you do know”
We smiled and she walked home and I’ve never seen her again but I often think of her x
Hana at Www.mamaunexpected.com
Space is all I need/want when mine is having a hard time and a reassuring comment is always appreciated. My most difficult moments are when my daughter hurts another child, she’s a hair puller. The parents at her nursery that I love the most are the ones that reassure their child and explain to them that she doesn’t understand and doesn’t mean to do it. Knowing they get it really helps x
Jo at Firsttimevalleymam.com
I was at a beach a few weeks back and those ride on cars set Z off, peppa pig, he ran, lucky into the amusements. I give chase he ran to the over 18 place, the guy said he can’t come in here no children allowed. He could clearly see there wasn’t any controlling him. He was throwing himself on the floor. I picked him up to get him outside where I could calm him and put him in my back. There was a family staring. I calmed him and as I walked past them I heard that isn’t how you behave children. So very loudly to my mate I replied something along the lines of, I wish I couldn’t tell him that’s not how to behave when sensory overload hits and the only thing you can do is flee from the surroundings. Then looked and Gave them the most disgusting look I could master ! If they had offered to catch him whilst running would have been better! The amount of times he runs and no one offers, ever! If only someone would that would be better!
Deb at www.chaosinkent.com
The best help I ever received was from a guy in Canterbury. I was having a nightmare moment, I was in a queue for a cash point, it was going totally pear shaped and some man with similar age child had glared, then when he realised I was not going to apologise for my son’s behaviour, he very loudly said to his children “do you see that?” followed by “that’s how I never want to see you behave”. I saw red and was about to scream abuse at the guy when another biker type man walked up and said very calmly “how can I help?” I looked at him and he smiled and said “my nephew has autism and my sister says that times like this are the hardest, when idiots judge and everyone else stands there feeling uncomfortable”. The tears started to flow and he laughed and said “I don’t know much about kids, but tell me what will help and I’ll give it a go – I know whatever you suggest will be easier than dealing with a woman who is crying” to which everyone in the queue laughed. Then a woman in the queue turned to the idiot who had made the comment earlier and said “Do you see that? That’s how a real man behaves”
*rapturous applause from the audience for this one please!!*
So while I was right on one hand, everyone is different, there are clearly common ways of helping that emerge from peoples experiences. If you’re witnessing an autism meltdown, I think the advice I would give based on these anecdotes would be not to judge and condemn, to stay calm and offer some reassurance (perhaps tentatively) and if the only thing you can do is to offer a smile, well that’s appreciated more than you know.
Huge thanks to my lovely contributors for their views xx