Struggling!

was sposed to be new thread

I would endorse writing things down. I kept notebooks for this from my twenties, and wish I'd done it when younger, but doubt I'd have been able to keep it secret without questions being asked. 

Writing things down and working out where things go wrong has been a useful strategy for me. It could be entirely personal to her, or a basis for talking things over with you, but the notes made would need to be for her eyes only to be effective. Asks a lot of a parent not to peek, but getting things down on paper and looking at how things fit together, could be really useful to her.

The problem with autism is it takes a long time to process misunderstood information. If you are only picking up parts of dialogue, you are then left trying to understand what was meant, or why people reacted badly to something you didn't feel unjustified. Often these are things that NTs would say and forget. Someone on the spectrum may still be trying to resolve it weeks ior months later.

She might say rude things but perceive jokes and double meanings as direct insults to her.

As a result the brain is constantly in turmoil and has difficulty taking in current information. Being able to write things on paper, draw connecting arrows, and so on, takes this activity out of the grain and into a different storage system.

It is important for parents to appreciate that social communication on the spectrum is foggy at best. Part of the problem is that being poor at picking up inflexion and body language means you don't learn from numerous exchanges through life as NTs would do. So the autistic brain becomes an analytical machine re-examining thousands of perceived sleights into infinity.

It may be that people underestimate this, supposing it isn't as bad as being deaf, but I think this underestimates the problem. You hear, but you don't integrate and interpret social information properly. With autism you don't get enough context, but you do hear a lot of puzzling speech. Trying to sort it out is what does the damage.

Hi Tabina, I had a phase of meltdowns, in which I knew that I was being totally unreasonable and over reacting, but was unable to stop myself. Someone was doing things which irritated me and it escalated to the intollerable.

I took myself away to a quiet room and began to visualise myself as a volcano. I wrote down 10 stages leading to a full scale erruption. That is, smoke coming out of the cone, through lava flow to explosion with fire and lava bombs.

I then wrote down the behaviours I had as the tension increased. These included, becoming tense, through nasty remarks, to screaming and shouting. I created 10 points showing increasing distress in me and equated them to the stages of the volcanic erruption.

I then fixed a point prior to erruption, at which I had to walk away and be quiet, totally alone in the dark, to let things calm down again. I wrote down what had upset me, then , when calm, explained to those who were winding me up, what had gone wrong for me, and asked them to modify their behaviour to help me. It took time, but I got there and life became happier.

You may be able to find something to which your daughter can relate, so that she can put the brakes on and get herself away from an escalating situation. Then she can perhaps work out what is going wrong and communicate more calmly.

If I might make two suggestions. Is you daughter hyper-sensitive - hears noises louder than other people, experiences sensations more?  It might be that she has built up some apprehension about sensory issues. People on the spectrum can often be sensitive to the actual cutting of hair, or the contact and squeak of scissors. Dentists vary in how reassuring they are to children, and the things being done to her teeth now may have more impact.

There are lots of threads addressing hypersensitivity to haircuts, dentists etc., if you search the forum. You might find it useful to explore these experiences and the solutions other parents have tried.

With meltdowns try not to link it with an immediate cause. Triggers may be last straw occurrences of a very minor nature that you might not notice. Meltdowns respond to sensory overload that may be building up over time - unresolved issues, things going round in her head you wouldn't immediately think of. It tends to be cumulative, and what brings things to a meltdown may be the response to accumulated stress. The cerebral palsy no doubt contributes.

Rather than as you perceive, she tells herself she must have a meltdown, these are going to be common expressions of overload as long as the underlying stresses are not addressed. But getting her to disclose what underlying issues she has that contribute to volatile stress may not be easy. If you can identify and help her resolve some issues it may reduce the number of times she reaches that threshold.

Do consider waiting rooms. The noises, smells and visual experiences of waiting rooms can be very stressful, as is the uncertainty of waiting. You tend to be stuck in a waiting area because you might miss your turn or being called. Piped music doesn't help, Small children making a scene, especially high pitches. Assess waiting areas and if they are affecting her, ask if she can wait in a quieter space.

I don't think counting to ten necessarily helps someone on the spectrum. It implies that she can help herself avoid over-reacting, and it is not that simple.

Hope these suggestions help.

Hi , welcome.  There are many posts on here about children being "no trouble at school" + then letting all their anxiety + stress out when they get back home.  What support does your daughter get at school - how many hours?  It must be difficult for her as well with the CP.  I noticed you mentioned she'd had an op + appears frightened of the hospital?  All this is a lot for anyone to cope with so it's understandable about the meltdowns, altho v difficult for everyone involved.  My son's an adult.  There were things that didn't bother him when he was a child but do now.  I think sometimes our children become more + more sensitive to things over time.   Is she able to tell you about school + the hospital when she isn't having a meltdown?  Do check out the posts as there could be helpful info there.  Hopefully other posters will come along + be able to offer help.