Tuesday, December 04, 2012

So that's what a meltdown is!

Reposted from an ASD forum just to remind me what it's like to experience a meltdown.  The experience is completely normal to me, but I'm just starting to realise how un-normal these feelings are and how ASD they are.  Useful stuff! Apologies for weird formatting.

"Urgh too tired - everyone been ill and my lungs are full of gack (it's a technical term, honestly...) - ended up having a meltdown today at a kids soft play place. Horrible feeling. I was in the ball pit and suddenly couldn't tolerate all the balls being thrown around (too visually distracting I think), started to feel my chest tighten so made sure someone was looking out for M and escaped. Bought a magma warm coffee and got so stressed carrying it around as adults kept on nearly walking into me. Really trying not to spill it on the kids whilst their mothers are backing into me... A bit hungry and feeling quite disorientated by now, and unable to judge distance (this is hindsight). Tried to call M for lunch, but he's inside a huge climbing frame having the time of his life.....

Spill coffee on my hands a couple of times but ignore it, finally get him to come out, realise the coffee is burning my hands, some lady is talking to me about some
thing, cant remember what happened next but I ended up just dropping my coffee on the floor as I couldn't move from where I was (too many moving targets). Apologised (I think), lady told me to go hold my hand under cold water so I did. She then said I hadn't held it under long enough as my hand was still red, but I couldn't explain that's what my skin does. I tried, but I'm not sure if I was speaking. Got Michael to the place they were serving food. Saw a friend of mine who has ASD kids and burst into tears in her, and had a big hug which was great as I could just block everything out and know M was safe. Just horrible!

What was so scary was how out of touch with reality I was through most of the above - I've had them before but I didn't realise the extent to which I take them inside. D lets all out and I'm so glad! At least it gives me a chance to hold her, or try and find her space to let it all out. What was so weird was deja vu after all of the above - I spent so much of my childhood feeling so overwhelmed and frightened by all the sensory stimuli around me, I hadn't realised that those were my meltdown! Sorry to make it about my, but I'm trying to get a handle on it so I can understand and support D better."

And then I carry on, because why say in 1 word what you can say in 100?

 ps I really am sorry to witter on, but it's useful (to me) to reflect on the role sensory stuff plays in all this. I'd been using chewing gum to keep me steady through deep pressure but was feeling so tired I went for the coffee! If I'd kept going with the chewing gum I would have had my deep pressure crutch, but obviously got rid of that so couldn't cope. As I put the chewing gum away, a little voice did say to me that I was throwing away my support and I should watch out, but of course I only remembered that in retrospect! Just really helps me understand D so much more - I mean meltdowns look so violent and horrible, I technically know they are not on the inside, but to have the actual feeling of one and work with that to help D feels quite positive."

and finally....

"I was only writing about it as it felt so positive afterwards to understand what had happened. I've not been formally dx as ASD yet, although the Psych I spoke to informally seemed to think I was but I have been dx with Sensory Processing Issues. I think today was sensory processing induced meltdown but one of the things that really interested me afterwards was simply NOT being able to communicate. My daughter has a separate speech and language disorder and delay on top of being asd and spd and I've never got it quite as much as I did today. I have a friend whose child's meltdown's are on the inside, and I realised that' pretty much where I am. It was so interesting to realise that was the same reaction that my daughter is happening even she is much louder. Glad it was useful, as I said I spent most of my childhood in a place of not being able to communicate through being constantly overwhelmed, and I;d forgotten how completely "squashed" I would feel as a result. Its one thing reading the official language of how to deal with your child, but another being able to identify the same experience in yourself :)"

Friday, April 13, 2012


Had a really funny thing happen this week, a couple of days ago. Actually it started Tuesday, when I had some more treatment from the dr for my health issues, which have been weighing more heavily than I had realised. Wednesday I was shouting at one or other of the kids about something and I realised that I was actually angry for a reason, I wasn't being a complete monster for shouting. Shouting is not a good way to deal with children, but I realised I had reason, and wasn't awful or failing as a mother, just reacting to circumstances. I constantly think I'm failing as a mum, so this was a huge realisation for me. I then realised that the answer to that argument was hidden somewhere in my reaction. So I could even stop feeling guilty about being angry! For me this is so big I simply cannot say it enough times, I feel so guilty constantly. I also realised that I would find the answer to the thing just by using the energy of th arising stuff. So if it was angry, I just spoke clearer, if. I was tired and a child was wanting more than I could physically do, I could just sort of relax into it. I'm still shouting too much, but it's coming from a calmer place. I phoned Ian as D had been screaming for half an hour and nothing I could do could get through until I used the anger energy. Ian noticed how calm I sounded which was great! This is also part of it, autistic children learn by observation, so the last thing you're supposed to do as a mum is shout. But the thing is, I have so many asd traits myself and am so similar to D that Im pretty certain I would have been diagnosed as autistic had that been around that much 40 years ago. So I'm already on a wrong foot, I also have her sensory issues, meaning loud noises really put me straight into fight or flight. So when she is screaming I'm battling my fight or flight, yet being desperately upset as a mum excuse my child is screaming. Add to that the complete failure in being unable to remain calm, no experts advice to follow because I've just failed it, and I still have a desperately unhappy child to support, whilst probably being in great. Physical and emotional pain... I think the most of this, is that being a parent is just about being oneself and just all the stuff that comes up. The problem is, I find this hard - like all parents. These days paretong is so focused on sleep routines, when to feed solids, polite behaviour etc, whereas, my worries were all about who I was when I was with the kids. I always felt that was more important, but never knew how to do it. Parenting is pretty well defined as I do things that are odd, but seem to suit my kids, the battle has seemed external as well as internal.

Monday, April 02, 2012

My typos are terrible!

My iPad does weird things in this format, I'm thinking about changing browsers. Maids love it though so that's cool.

D has started her new school. It's a special school and I struggle with that, but then I also struggle with the fact that the ed psych has said she is too high functioning, too normal to attend. He's right, she is, but she was highly anxious in her previous setting. Such a shame our schools do not cater for happiness? What else is there?

Last thing to end on a happy note. We had an Easter Assembly at school recently. D LOVES her school, loves her teacher, runs onto the bus with a big grin in the am and is generally calmer and happier at home. It's completely brilliant. Easter Assembly happened, I'd made an Easter bonnet with D just before. She was the only one out of her class and the first child in the whole school to stand, smiling broadly, and parade her hat. Just amazing. The older pupils did amazing presentations, but of course it's my girl in her hat I remember.

World Autism Awarerness Day

So ill ATM, all wobbly and dizzy and trying to stay upright and not vomit, or shake, ache etc. blood test results on Thursday. Somehow it's quite brilliant, somehow there is more happy involved. Today was brilliant. It's not always going to be so, but just had a get day mooching around wit the kids.m did scream and swear this am, when they'd thrown sand all over them selves and I was worried about sand and eyes and ears - wouldn't be the first time. But then I released I hadn't had time to check in with myself, so I sat down at 11, had my first drink of the day and realised I actually felt rubbish and scared. So I had a good reason to be angry, and knowing that disapiatated it.

So the thing I've realised on WAAday is that somehow I can actually cope. The fear and uncertainty of the last year, the worry about schools, the hatred and judgement of our schools, it's being got through. There will be more stuff too, I accept that.

Also realising how much fear of other peoples reactions has so far spoilt my aims for career and study is really helpful. It's such a tangible fear, if not I could cut it up and cook it, there would be no more world hunger. Such a shame. Seeing the sadm fear in D and realising its a fear of unpredictability of learning not being completed unless its rote and perfect, and seeing the same fear and knowing its all brain level stuff. Born with brain level stuff, not learned. I've tried so hard to shield her from being like me, taking her out constantly as a child, socialising her, doing everything the various specialists said and she's still use who she is. M on the other hand, who I did none of those things for, is so sociable I don't nderstand it. I don't get how he can just walk up to another child and start playing, how does he know the rules? I never did and that's when I start to get it, get that subtle but huge difference in brains.

Thursday, March 08, 2012

The last 2 books I've read and a local monk have all told me to take regular breaks through out the day for really short periods to take a deep breath, feel the spaciousness and then get stuck in again. I wasn't able to follow the first two, but thankfully the mo pointed out its about being willing to try and not succeeding.

What a thing it is to find complete acceptance of ones failings that one can't accept oneself.

Wednesday, February 22, 2012

I'm really pleased that D loves her new school, loves all the new experiences, and is getting used slowly and gradually to the school bus. I'm so impressed she is able to all of this, this is the emotional equivalent of a hike to the Himalayas to be undertaken dressed as a chicken, she is doing amazingly.

What I am exceedingly, exceedingly cross about is that the school bus is full of obviously disabled children, much more severely asd kids etc. D will eventually move into main stream where hopefully she will have learnt enough social skills to cope. These poor kids will stay in their special school, to go into supported living and society will never bloody see them. No one will realise that the disabled are part of our society if they are never seen.

It makes sense to have a brilliant school like the one D is gong too, with a centralised pool of resources as money is tight and the kids go, need these resources to learn. But it makes me so cross that because of this, we don't see these disabled children in the streets, we don't see them in the shops, we don't see them anyway. Access is so restricted for a variety of reasons- steps not ramps, no accessible toilets, too much/ little sensory stuff, the list is endless. No one person could solve it all, but in the mean time, we have a sanitised image of a disability free society. Disabled children are looked on as freaks, morons, saints or geniuses, their mothers the same.

Neuro typical adults who should know better categorise and damn. Our schools should be and can be brilliant. To hear Deborah talking about her class mates is a truly profound and moving experience. But if it were recognised that children were humans and benefitted from loving adult contact, were not all identikit robots, and had needs, wow our schools would be amazing. How much do we loose by hiding our disabled people away?

So cross, very Pre menstrual, can you tell?

Saturday, February 04, 2012

Inspired by a friends sculptures.

Tie a thread around a loved one's waist,
Or weave it around their heart,
Let it follow wherever they go,
Let go of the ends you hold.

The threads will disappear
The ties remain still.

Do this for a friend who dies,
Let them go.
Welcome the memory of their love
The tie to their soul stays with you
Until you too let go.

Let love love stay with the world,
Tie us all together
Threads that bind, fast unwind,
Our apartness binding us closer.

Soft as breath
These bonds are forged
Never forget
But just let go.