My Jekyll and Hyde girl

4 Feb

What a difference a day makes in the life of an autism parent. And her family.

Yesterday morning M decided that every single thing I or her brother said or did between half past seven and five to nine would be a cause for screaming, running away, more screaming, punching the table, wall, clothing, (luckily neither of us) and nothing whatsoever would calm her down. I deliberately didn’t rise to any of it – although this is so hard – and just stated the facts e.g breakfast is on the table, your clothes are in the pile over there, we need to leave now, the normal kind of things that make up a school morning routine. If she refused to eat I said “OK but you will be in school and you will be hungry, just remember your choice is to be hungry or to eat”. The same with the refusal to get dressed “You will be taken to school in pyjamas”. This time she decided she would accept non uniform clothes but I wasn’t in the mood to cut any deals, I know M too well; if I relent once she will use it for ever more.

The wee man was getting visibly distressed by her rage, and I kept telling him not to say anything but to keep to his routine and keep his distance. For an eight year old who thrives on lighting the touch paper of her anger he showed remarkable restraint.

Suddenly at five to nine M was hurriedly throwing on her school uniform and racing to grab her coat and bag for the quick drive up the hill. We had no choice but to drive; even if we had been earlier she was in no fit state to walk. She held it all together and walked into school without so much as a backward glance.

I felt traumatised to be honest.Totally exhausted and on the verge of tears. I managed to sit through an hour of the Parent Council meeting with my head buzzing from the echoes of M’s screams, and made my excuses asap at the end. When I got home the tears did fall. I really hadn’t done anything differently. M loves routine and I strive not to change anything on school days as I know her anxiety levels are already high. Maybe it was “just” because it was Monday. I felt like a total failure. Which logically I know I’m not, but you know how it feels when it all goes so horribly wrong.

Her school day appeared to have gone pretty well, and the afternoon proceeded into the evening without too much happening that worried me. I didn’t expect her to do any homework or even her reading book, it rarely happens on a Monday. I thought the worst was over when unfortunately the request to put her pyjamas on was the trigger for a huge meltdown. It took me, hubby and dd2 to keep hold of her physically in order to a) keep her safe and b) carefully remove her clothes and re dress her. I expect some people are wondering why we didn’t wait until the meltdown was over, but we have learned the hard way that that will just prolong the agony. When she was all finished and safe to let go all she needed was cuddles but she gets so over stimulated she has terrible trouble “coming down”. Hubby got wee man to bed and I took M onto the sofa. Experience has taught us that she won’t sleep, even with melatonin, after a meltdown at night unless she is next to me, her obsession. Her anxiety prevents it. She has stated in the past that no-one loves her except me, and I don’t know why she thinks this but at least it meant she might relax with me next to her. She put her head on my lap and I pulled her weighted blanket over her. She pulled the hood of her dressing gown up to shield her eyes (she seems to become hyper sensitive to all stimuli) and finally gave in to the melatonin.

The only good news about a mega meltdown is it does appear to exhaust her so she really sleeps. This morning I had a bright-eyed wee girl in the bed for a morning cuddle, and then with some trepidation we went downstairs. And this is where I wish we had cameras filming our lives. Nothing happened this morning that didn’t happen yesterday. The same breakfast, same crockery, same lack of radio, same (almost) pile of clothes, etc etc. And yet……………

I won’t be silly enough to say M was a ray of sunshine delighted to be starting a new school day, Far from it. She doesn’t like leaving me, ever. BUT she went through her routine and we ended up at school in plenty of time before the bell rang, with no obvious signs of distress. She even knew about a change of plan as her PSA was expected to be a few minutes late, but she was fine with that.

And this afternoon the good mood continued. I had walked up to collect her in the sunshine and we enjoyed a stroll back home in really gorgeous sunshine. I managed to negotiate her reading her book by saying that she could have the computer time she wanted if it was completed, and she also left the computer without complaint to stuff down a big tea. She blipped every so slightly when she wanted a bath and got a shower, but she recovered from that quickly. She even coped brilliantly with a (fortunately) short power cut 20 minutes before bed.

So, who knows what tomorrow will bring? I have given up trying to second-guess my little one. There must have been something pretty awful going on in her head yesterday. Will I ever find out? I don’t know. I’d like to think that one day she will be able to explain when the demons are crowding in, so that I can try and help banish them before they take over, but until then every day is a waiting game to see which personality I get to see.


5 Responses to “My Jekyll and Hyde girl”

  1. spectrumwarrior February 4, 2014 at 11:26 pm #

    Such honesty!Reading this was like reading a typical morning in our house. Our son has autism with high anxiety and some days I swear a gust of wind can bring on meltdown after meltdown. Makes you want to live in their heads for just one day to see what they are thinking and feeling to understand better.

    • ouremuk66 February 5, 2014 at 9:58 am #

      I’m glad it resonated. I like to tell it how it is, in the hope it might help other parents struggling to realise they’re not alone. Autism can be a lonely place.
      I too wish I could understand from my little one’s perspective. My older son has been able to explain a lot of his sensory issues to me which make me admire him for even getting dressed some days – when you are hyper sensitive to the whole world it must be so wearing.
      Thanks for commenting 🙂

  2. Tracy February 5, 2014 at 3:00 pm #

    Honest post, Karen
    It never fails to amaze me how the days can differ. One day can be the day from hell and the next it’s great and you think you’re going mad and imagined the day before.
    The good thing is that we can all talk to each other and compare notes – it doesn’t seem so lonely that way. xXx

    • ouremuk66 February 5, 2014 at 5:10 pm #

      I don’t know where I’d be without my twitter sisters and brothers, you all keep me sane. Well, saner.
      And yes, the am I going mad question is one I’ve asked myself plenty of times. xx

  3. AutismMumma February 9, 2014 at 10:13 am #

    Like you, our days drastically vary and I can never foretell each day. Which is why I’m only just reading your post, 5 days later.
    We have a lovely twitter community and the support is fantastic xx

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