human...

11/7/2012

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I'm sure many of you know the feeling of a day that simply needs to end.  Something happens...  if you're lucky it'll happen at the end of the day, less lucky and it's minutes after you wake up... and everything simply implodes.  You feel stuck and lost and if you're truly lucky you can dimly remember that all you need to do is wait because things will be better tomorrow.  I'm making this the mark of my sanity, actually.  If I can remember that little fact, I can make it through the day.  Just now, at 7pm I'm beginning to feel better because today is finally at an end.

This morning was fairly average, though to be frank I think that puberty hormones are raging in my dear little girl.  The rage that has been coursing through her is quite something to behold!!!  So... one child who has already spent two hours worrying (small word for a big emotion) about school is also angry as hell and hey, Mum's such a convenient punch bag (emotional, not physical thank goodness).  And another child who may well be picking up on the stress but is being a brat over nothingness and yelling at me - apparently I am a meanie and an idiot.

Well, normally I would take all this in my stride, calm one and be unmistakably cross with the other.  Today, I was human.

So I was quite hugely tired and frustrated with the constant, inescapable anxiety of child one, and not as patient as she needed me to be.  And I snapped at the other - I don't like being called names.  I didn't like it as a child and I like it less as an adult - especially when it comes from my children.  We managed to get into the car and found a parking space. Tom out and in his power chair - yay!!!  Kesia... stuck and refusing to move.

Once more I found myself going towards the human option.  The normal and only viable option was to stay very calm, talk gently and slowly coax her out (imagine a cat stuck up a tree).  The human option was to raise my voice, get frustrated, and eventually to go and get her...  Which wasn't the right thing to do, but hey - that's where I ended up today.  The inevitable followed:  I had to keep hold of her to stop her running away and the hand over to school staff was simply ugly.  And because I was still being human, I left.

As I left, any semblance of coping left me.  I couldn't breathe, I couldn't talk.  Argh, emotional pain just plain hurts!!!

So... On the basis that expanding on that last statement would have me in a state (not to mention those of you who know me also tend to get upset if I do), I leave a blank.  The episode of the morning emptied me and exhausted me and since 8:55, I have simply been desperately waiting for the day to end.

Here we are!  It's 7:20pm.  I've had dinner (thank you Nick!!!), Tom is in bed (after a phenomenal tantrum this evening) and Kesia will be on her way in a few minutes.  Today is over.

My bestest friend in the whole wide world is about to pop over for a cuppa, and already I'm properly aware that the weight that has been hanging over me all day is not a forever thing.  Tomorrow will be better.  So long as I can keep those pesky human reactions at bay, I'll be fine :) 
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Fleece to Yarn... a beginning

5/7/2012

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It's been so long since I've had the space in my head to sit down and write.  The need to spin the jumble in my brain into yarn that can then be knitted into some kind of sense, beauty or use for moving forward has been increasingly pressing but each time I reach for the keyboard (pens are really not my thing) the page stays blank and the jumble stays put.

The specifics of life are simultaneously dull and traumatic and I have a tendency to feel as though I am constantly whining.  And yet, as much as I would like to launch into the part of all of this which will start to be helpful, useful (to me I must selfishly add though any help it offers those in the big wide world is happily given), I am forced to admit that this will probably only happen once my ranting is out...

Deep breath, here goes...

Where to start?  Each time I see my lovely therapist I end up talking about one or other child... Today, Kesia is my starting point.

In the last few weeks my darling darling girl has quite simply begun to fall apart.  Those of us who know her well are aware that this process started a long time ago (by which I mean well over two years), but I'm fairly sure some teachers at school think that there was a momentous trigger about a month ago.  Certainly since then she has missed a lot of school (missing lessons doesn't seem to mark the staff as much).  She feels ill.  Pretty much all day, every day.  She doesn't sleep despite melatonin, and although the doctor suggested she might need two tablets she refuses to do so.  She is so terribly worried about everything that goes into her body:  that she might be allergic, that the dose might be wrong, that she might be poisoned.... etc, etc, etc...

For a number of months now the morning routine at school has been for me to walk her to the "blue room" (inclusion manager's office/teaching room).  Separation is deeply traumatic for both of us.  She starts to shake and cry, regularly grabbing onto me in desperation.  Screaming (serious, loud screaming) is commonplace and running away is also frequent.  It had become quite normal for her to be restrained by one or two members of staff in order for me to be able to leave the school.  How awful, deeply deeply awful that this became normal.  That we all accepted it as the way things were.  And that if she settled within half an hour this way that things were was acceptable.

My daughter is ten years old.  She is extraordinarily intelligent, caring and understands right from wrong.  She desperately wants "to be able to go to school like everyone else" (her words).

A few weeks ago I had to carry her over my shoulder to get her into school.  Two members of staff took her from me as she was screaming at the top of her lungs, her dress hitched up to her waist.  She was not angry, nor was she defiant.  She was simply, excruciatingly terrified.

And that was my moment.  The moment at which as a human being nevermind as a mother, I said STOP.  There is to be no more physical restraint.  We must ALL begin to acknowledge that my beautiful little girl is mentally very unwell, as a result of her difficulty to manage the world.  For years the possibility that she may be on the autistic spectrum was denied.  We have a diagnosis now of Asperger syndrome.

In the last few weeks she had spent one week in the blue room doing the assessments that all children were doing.  By removing her from the classroom she was able to excel in all the tests.  The next week saw a move back to the classroom with a named adult to support her throughout the day.  Picture timetables were put in place and specific staff assigned to her.  Her stress levels were extraordinarily high but she managed - all but the mornings.  The running away is getting worse, and she hurt her hand accidentally one morning - because how do you contain a child who is so distressed that she will launch herself from one side of the room to the other?  Sleep has been getting worse, and she has increasingly frequent nightmares.

On Sunday we went to the New Forest to celebrate Zack's birthday.  It was a lovely outing and Kesia worked so hard to simply hold herself together.  The trip itself is a source of huge stress.  The restaurant was simply painful to her as she found it so full of overpowering smells, unbearable noise and so many people...  Leaving Zack was traumatic as she misses him so much and had not been able to spend much time with him.  By the time we got home she had had as much as she could take and went into meltdown.  This doesn't happen too often with Kesi.  She is more likely to shut down, curl up in a ball on the ground and be unable to speak or respond to anybody.  This was full blown meltdown, banging furniture in her room very loudly, shouting incoherently and banging, banging.  We are quite good in our house about letting such things happen:  on the whole I'm much happier for them to bang furniture than each other or themselves.  But when this rhythmic, implacable noise has been going on continuously for fifteen minutes, my sanity begins to fade...  Between the two of us, Nick and I were able to bring her back.  There was no question of being cross with her - she had done incredibly well and simply run out of resources to handle her anxiety and stress.
A restless night followed and it took no internal conflict to make the decision that she was not well enough for school.  

Today is Thursday night.  Kesia was home Monday and Tuesday.  Wednesday involved a school trip and we had two appointments at GOSH for Tom.  With school, we decided it would be better for her to come with us.  Wednesday morning was by far the calmest we have experienced with Kesi for weeks.  She had known about the plan since last week and there were no questions about what was happening.  At around 11am she suffered a massive panic attack:  she became convinced that she couldn't breathe, started shaking and became very pale.  All due to a trip on the train to London.

We made it.  There, through the appointments, and back.  In one piece?  I'm not sure.  I'm not sure when Kes was last in one piece anyway.  The dreadful thing is that we have all become accustomed to her state of mind and taken it for granted that it is simply the way she is.  Oh, and the usual "she'll be alright" thrown at me by other mums and teachers at school.  I would take a leap into the unknown and guess that these mothers have never experienced their child in that state.

Today Kesia went back to school.  Not because she was feeling better.  I am stuck in a netherworld that makes me decide from day to day whether she is well enough for school or not, without actually giving me the responsibility to make that decision.  I know full well that the system will send out the "educational welfare officer" to my door to remind me of my legal responsibility to get her to school.  In one sense this is frankly the least of my worries.  But because I know how these things work, I also know that I need to work with the system as much as possible.  I also need to give Kesia the right message.  This morning, aside from her very real anxiety and tiredness (she has been awake since 3am due to a nightmare), she added a level of very normal pubertal strop and told me that she was not going to school.

My children know full well that they do not get to decide whether or not they attend school.  There is a simple rule that if they dictate, the opposite happens.  So as soon as those words were out of her mouth, there was only one possible course of action - to school we went!  I also knew that she had wanted to try to get into school today.

I was with her till 9.20.  The separation was as ever, painful and she ended up running away and even got out of the school buildings.  My morning was not especially peaceful.
I went back into school to accompany the choir as I usually do on a Thursday, to be met by the inclusion manager and my sweet girl.  She was shrivelled, in tears.  Miss B told me that half a day was enough.  Kes had done so well, but it was time for home.  Tomorrow is officially a half day.

As I write this, I become far more aware of the extent of the emotional trauma that we are all living, day by day.  With a somewhat wry smile on my face I'm also thinking that in the time that all of this has been happening with our precious daughter, we have experienced a rollercoaster with regards to Tom's education that is far from over.  Zack's annual review (for his educational statement) is upcoming next week, though I do not anticipate any unexpected problems there.
It's all a little overwhelming, but I have to remember that despite everything we are still standing, and there are still smiles.  We are preparing for a number of battles which will have to be fought if our children are to get the fair start to life that they deserve.  Our definition of childhood is not quite standard.  But as much as I am happy to stretch that definition, I have reached the limit of what I will allow Kesia to endure.  She has had an extraordinary childhood to date, but one that has brought her benefits as well as tribulations.  Her mental health should not be in jeopardy, and the taboo that is so strong regarding children's mental illness cannot be allowed to stand between her and peace of mind.  Happiness is a step too far just now... let's aim for peace. 
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