Even More Support – a Mixed Blessing

28 Jan

I had been extra prepared for this term’s review meeting, with a long list of subjects I felt needed covering.

There were 7 professionals there, with another one apologising for absence. Hubby just couldn’t spare the time off work (so far to come it means over half a day) so I was pleased that the meeting was, as always, parent-friendly. 

Everyone – that is school and home – has noticed a downturn in M’s attitude and behaviour since the return to school after the Christmas break. We all decided that as December was horrendously stressful all round we would ignore it as it corrupts the “baseline” that we had been working to since September.  Part of the behavioural issues can be attributed to M’s big sister going back to uni after a break of a month and the change in routine that this causes. We had mistakenly thought that seeing as the first time was in September that M would be more understanding and adapt better, but the opposite was in fact true. Two days running we were so late to school that I sent her brother on ahead, and one day M arrived in her pyjamas as I had to carry her yelling threats all the way to the car and into school. It was felt that it was important for consistency that she does attend every day as it sends a clear message of routine.  We certainly don’t want to back to the days just over a year ago when she wasn’t in school at all, and now with the level of support she gets, it is easier to know (hope) that she will engage at some point in the day.

She has become a lot more vocal since going back, both in good and bad ways. She has been recognising her body’s need for deep pressure therapy and asking her 1 to 1 to use the various bits of equipment they have to provide this, including getting the 1 to 1 to use both her hands to tightly grip and squeeze M’s arms, from shoulder to wrist and back again. This squeeze technique is something M finds very helpful – at home I do her legs as well – but if this has happened the PSA always lets me know at the end of the day as I think she is worried about squeezing too hard or leaving marks. I do know for the most part M is a sensory seeker so she likes extremely deep pressure to feel any relief.

M’s self-esteem was a subject that I found hard to deal with, even though I had it on my list to speak about. Her language is so very negative, and we are used to her sobbing “just kill me now” “I want to die” “I’m useless, throw me in the bin” at times of stress. She is becoming more inventive in her choice of things that either we should do to her or that she says she will do to others. The most extreme a few days ago was screaming at her brother that she was going to slice his head off with a chainsaw. I think he had moved one of her cuddly toys to warrant that level of abuse. It is usually something very simple.

What is not so common in autism generally is the realisation some time later that she has behaved in an inappropriate manner. Not always, but more often than not of late, she is apparently utterly devastated by her behaviour and will apologise, although generally only to me. Sadly, the apology is usually accompanied by more requests to get rid of her as she is stupid and useless. It is becoming evident that she is aware of her widening differences from her peers, and this in turn is also piling on the stress.

So, as well as full time support in school, the OT who had been thinking of signing M off is now definitely not doing that, and will be coming into school in a few weeks time, and there has been a recommendation that clinical psychology be approached with a view to seeing if they can help. I have felt for a while that M is quite aware she has autism, but unlike shortly after her diagnosis when she seemed relieved to know that there were reasons for her feeling different, she has been actively trying to pretend she is the same as everyone else, which is costing her too much effort, and overwhelming her with the exhaustion of the pretence. The idea behind more help is that hopefully she can begin to accept that she is, to quote one of my favourite autism sayings, “Not broken, not damaged, but different” and to learn to embrace what she needs in order to function in the neuro-typical world, whether it be her ear defenders, time on her own, or to curl up in a ball in her fleece blanket in her den-under-the-desk as “everything is wrong today”. She has even rearranged her den (previously just for retiring to in times of extreme overload) so that the table that forms the den has become her work-station, with a chair moved in behind the screen (interestingly she scoured the classrooms till she found the exact chair that was originally there this time last year) and all her work, pens, tools etc moved onto the table top. Her PSA had mentioned this development so after the meeting I went to have a look with the OT. My first thought was “someone has built themselves a wee fortress” and the OT said “safety, she’s going for safety.” So, even as she is actively trying to engage in the mainstream activities as much as possible and to lessen the gap between herself and her peers, somewhere deep inside she knows she can’t keep up the act and will need to barricade herself in. I am delighted at her ability to recognise this on a subconscious level, but there is a huge sadness that has overwhelmed me this evening that she is struggling so very badly.

The prospect of some respite was mentioned and one of the main movers and shakers in social work is hoping to find a support worker so that as a family we can get a wee bit of “us time” every so often. I know how stretched these resources are, but without any family around, and with all/most of our friends being in the same boat, we literally have no way of respite without involving an outside agency. Social work are also trying to ensure that B, wee brother, is supported too as he has really struggled with being so often in firing line of M’s outbursts and it is beginning to show again in his attitude at school.

So, a very involved meeting with a lot of support and understanding from the professionals, and I sense a real will to help my wee girl, for which I am enormously grateful. I am just very down right now thinking about what mountains she has to climb every day just to achieve what most of us take for granted, getting dressed, eating, going to school, learning, playtime, lunchtime, and then the whole after school routine of home-time, homework (not often!) socialising (or not) and being part of a large family and the sensory demands on every part of her, and then, horror or horrors, needing help in the form of medication because even though she is exhausted her brain won’t switch off and let her sleep. She’s a wee hero every day. I hope one day she realises this too.

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5 Responses to “Even More Support – a Mixed Blessing”

  1. Tracy January 28, 2014 at 6:55 pm #

    Firstly, it’s great that M is getting the support and understanding that she needs.
    I empathise with your concerns as a Mother. It’s so hard to watch your children struggle.
    I empathise with M’s attempts to fit in and be ‘normal’. It Is exhausting and it always will be because she’s trying to do things that she’s not wired up to cope with. You simply can’t make a square peg fit a round hole but I totally understand the desire to fit in.
    Acceptance will come when she’s ready.
    I also think that respite would do you good – recharge the batteries. Autism affects the whole family. xXx

    • ouremuk66 January 28, 2014 at 7:46 pm #

      Thanks for commenting Tracy, it’s so hard for me to watch her “fail” at the socialising as I know how much she wants to, but I’m hoping we’ll find the tactics to support her and she will start to give herself a break.
      I totally need the respite!

      • Tracy January 28, 2014 at 7:58 pm #

        It’s possible that in time, M will be able to do ‘normal’ things but she will learn to know her limits and the fact that she’ll most likely need lots of quiet time in-between to process it all. Try and look at it that she’s not ‘failing’ at socialising but that she’s learning.

        Totally get the need for respite and I think it’s important that you do. For all I understand S, there are times when I have to walk away from him and count to ten…but I only have one child to cope with unlike you.

        I think that you are a fantastic Mum and you’re a real inspiration to me and other mums with autistic children.. xXx

  2. L (@Mamaasp) January 28, 2014 at 7:21 pm #

    oh hun, sending hugs to you. I know how you feel, its hard and i fear it will get harder ! My Son feels he is not good enough too, its heartbreaking xx take care xx thinking of you,

    • ouremuk66 January 28, 2014 at 7:48 pm #

      Aw bless you L, I do so hope it will get easier not harder but I fear you might be right. The awkward teen years lie ahead and they are never easy, but I am going to aim for optimism today after having a good vent. xx

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