Tuesday 28 February 2012

A really long 'day in the life of' autism post - ignore unless you want to offer sympathy ;)

So. This afternoon has been a challenging one, but in reality not much more so than most other ones. This one, though, culminated in a little tear shedding (from me mostly) as I lay on the stairs cuddling my younger daughter.

It had been a fairly average day at school, I believe, but apparently it took a turn for the worse ten minutes before the end of class. Something to do with the teacher changing going home positions (which I understand they like to do to give everyone a 'turn' or something). I have a feeling this is a problem which has been niggling Sasha for a while, and today it was just too much for her. She told the teacher 'you have made me cross and upset', and that 'mummy is the only one who can ever make me happy'. So in I went at the end of class to try and console her. I was due to go in anyway, to take a look through her Learning Journey with her (as all parents have been invited to do), and fortunately she did cheer up a little bit as we looked through that. After the last page though, she instantly wanted to go home, and to be carried out again (the carrying request has happened once a week for the past 3 weeks now...).

I know from the looks I got that the teachers and other mums thought I should not have picked her up, and I should have just dealt with the tantrum about not being carried. I can only say that as Sasha's mum, I know those times when it is worth forcing an issue, and those when a meltdown is about to occur rather than a tantrum.

Anyhow, I digress. We left in the car, and Sasha got distressed as I turned to go the usual way home just at the time when she was telling me not to go that way because of the dinosaurs (the instruction came a little too late, so I just had to deal with the upset). She has been refusing to walk down one school path lately due to scary dinosaurs (?) but this was the first time I'd heard it in the car.

Once we got home, she did recover slightly and had some good quiet time, but then decided at 5 o'clock that she wanted to go out on her post bicycle and post something in the postbox by the big playground (thankfully a 3 minute walk from our house!). This was because lately she has been quite fixated on letters, and envelopes and posting (not sure why but maybe I had better check the latest Oso....!) and because we saw our lovely local postman on his bike this morning.

The thought did flash through my mind for a nanosecond that maybe I had better say no, as it was late and we were expecting Tamsin back, and any other 'normal' parent would have just said 'not tonight dear'. Again, I just know that some days it is possible to delay or distract from the original idea, but today was not one of those. The build up of events is what gives it away generally. I can understand how difficult it is for others who are not with her most of the time to make this distinction though.

So we sat down to 'quickly' write a card or two, which is where she nearly disintegrated again. Firstly, because she tries to tell me something she wants me to help her write but due to the excitement, or not being sure of her own mind, she ends up mumbling all the words together and it's impossible to tell what she wants to say. When I try and clarify, she just gets really upset about not being understood but mumbles again in exactly the same way, over and over, getting more irate. Secondly, I made the mistake of trying to work out what one of the letters she had written was, and again she got hugely upset. Some of her letters were beautifully formed and almost perfect, and I hadn't really realised before now she could write at all, but then it seemed she was doing others wrong on purpose, because she doesn't really want to conform.

Anyhow we got the letters done, address on (fortunately she let me do that bit!) and stamps on (she loves that) and went to get her bicycle, with the basket, so she could take them off to the postbox. As I went to put the helmet on I stupidly got her skin caught in the clasp (bad mummy) and she really cried, hurty tears, but not once did she blame me for it or get cross with me - something I know a certain other person would definitely have done. She did her best to recover quickly as she knew we had to get out (it was getting dark at this point, and we were expecting Tamsin back shortly!!). So we had a lovely trip out, with a quick swing too, and all seemed OK.

Fast forward half an hour and it was like a switch had flipped again. She came in to me with her head hanging, saying she was sad (and she looked it), but she wouldn't (or couldn't) explain why. We went up to bed, where she refused to brush her teeth and just wanted to let the water run (although this is an improvement on the last 4 and a half years ;) ). She got really upset when I turned the water off and decided then that she wanted to sleep on the stairs. As in, with her pillow on one stair half way up, and her duvet over her - see pic below:

Before lying down she told me that she doesn't want to go back to school at all ever next week - a sign that today has really thrown her. She wanted me to cuddle her on the stairs and read her book. Lately she has fixated on two books - Splat The Cat and Love, Splat (sadly found this just 2 days too late for Valentines Day for her!) by Rob Scotton which makes a pleasant change from Dora (she has most of the Dora books and for a long time wouldn't read anything else - in fact it's only once in a blue moon she'll let me read any other book to her!).

Love, Splat has been the favourite for the past week or so, but at some point she started wanting to say one particular page in Splat's voice herself. This has crept up to the point where she doesn't now want me to say the words of the 'bad' cat as she doesn't like him, but tonight she got really upset by me not saying the words, but also if I did say the words, so I couldn't win. I had to pretty much race to the end of the book, accepting she would just be upset. It does make me sad when I know I just can't help her - whatever problems she is having at that moment are down to the autism and just not fixable.

So here endeth today's mammoth essay, sorry about that, but I wanted to record it for my own diary thoughts rather than to get sympathy specifically. I think it does help to remember what the trigegrs are (in this case the difficulty with positions being changed at school). Thanks for reading if you got this far though!!!