I’ve been holding my breath for the last six weeks.

At the end of the summer term, I had one kid succeeding beyond our highest expectations and showing vast improvement.  Given how things were with Eldest Zack three years ago, this is a new life in every way.  We are living newly, but he has a life ahead of him that did not exist back then.  There are truly no words to express the relief and joy that comes when hope replaces despair.  My gratitude to his school will never wane, nor will I ever find a way to express it adequately.

The other two kids were not in the same place.  Far from it.  Little Man Tom cannot function in mainstream school any longer, and we had begun the long process to address this issue – the Authority (oh, yes, in letters, they refer to themselves as such, capital letter included) have interesting ideas on what constitues appropriate provision for a child with special needs…  Having been given two weeks by “the Authority” to put together our evidence for this change, they then had six weeks to consider it.  So we left school with no idea what lies in Tom’s short to mid term future.

 

Sweet Girl Kesia was in a very bad way.  Her anxiety had reached fever point and she was out of school more than in… not as a planned intervention a lot of the time but simply because the moment was not manageable.  For the last week of term it was decided that she should stay home.  With Year 6 looming in September, we left school with no idea how we would be beginning school again.  A meeting would be held on the 4th of September.

So I locked my worries away in the big wardrobe in the back of my mind… the one that holds all the bad stuff while I get on with what needs to be done right here, right now.  I’ve tried in recent years to stop using it.  The trouble is that it’s a fairly leaky wardrobe, and those worries disintegrate a little and seep through the cracks.  So anxiety spreads in the back of my mind, without the cohesion of the original worry, nor the control to deal with it that the front of my mind can bring to it.  But with 6 weeks of summer holiday and absolutely no way of affecting any change in these matters, the wardrobe was brought back into office.

It appears that together with the worries, a good bit of my breath went into that wardrobe as well… and at the end of those six weeks, I feel as though I need to take a breath.  In fact, my lungs are burning and I feel I may pass out if I can’t take that breath!

September 4th 2012…

Darling man took the day off work to take Eldest back to school.  The latter was raring to go, and other than a long trip for Darling Man, this was uneventful.  Together with the paraphernalia of a young teenager, Zack also took with him a substantial amount of tension out of the house.  This is a good thing in that he’s largely unaware of this tension, so it’s not as though he is lugging it around with him!  A phone call to school that evening confirmed that he was happy and settled, and thrilled to be back “home”.  So much so that he chose not to speak to me as he was too busy.  I have yet to speak to him, and I take this as a very good sign.  As a result, that little part of my heart and mind are at peace and happy!

A phone call the previous day had at least settled the whereabouts and whoabouts of the meeting, and Mark Brown had shuffled his day to strengthen my voice. (Another someone to whom my gratitude will never be fully expressed, and about whom a whole new post is due).

It was a good meeting.  My hands and fingers are poised, and somewhat still as I consider what and how to write while preserving the confidentiality that each one of us deserves.  I have nothing negative to say, and would love to shout from the rooftops who said what, how I felt respected in a way that has not happened in several other professionals’ offices, how much care each one of those adults showed for the welfare of my little girl, how they all racked their brains to dream up strategies to help her forward.  Their names deserve to be sung, with bells accompanying, for being human, for allowing themselves to be as good as they can be and acknowledging that perfection is not a realistic expectation.  But they all deserve their privacy, and I’m just writing “me” and “mine”.

Let me just say that I and Sweet Girl (who was not present) were shown such compassion and respect that I was not only hugely relieved but deeply touched.  The care they gave filled me with that breath I so desperately craved.

So what conclusion did we reach?  We  know that she does not respond to “traditional” strategies used with children who have autistic spectrum disorders (ASDs).  We know that her level of anxiety overwhelms her and makes her feel physically ill.  All day, every day.  We also know that she is very bright, and that in spite of accessing very little education last year, she is academically at the level expected of her a year from now.

We acknowledged that given her anxiety, she cannot access “learning”.

We concluded that our focus must be to help her feel safe in school, that our aim should be to enable her to “be in school”.  Studying and learning could then be implemented.

We agreed that this would take a long time.

These two conclusions are enormous, and are only possible to implement with great understanding and flexibility on the part of the school.

In practice, Kesia is currently going to school for one hour a day.  Which may seem very little to most of you, readers…

In practice, Kesia has been able to go into the school building without experiencing a meltdown (with screaming, kicking out and running away etc) or a shutdown (collapsing on the floor, losing the ability to speak etc).

In practice, Kesia has been in her classroom, a part of her class for a whole hour two days in a row.  She had participated in normal school activity, without running away, without having a full blown panic attack.  She has felt listened to and understood.  She has been able to express her difficulty when things became difficult.

In short,she has experienced success!  And although she has had to work very hard to control her anxiety, she has made it through that hour and come out with a smile on her face!

Tomorrow, Teacher will help remind her to use her ear defenders, because she was able to express her intense discomfort at the noise in the classroom today (only at the end of the hour, but the fact that she was able to explain at all is a wonderful step).

Teacher is new to our family this year.  In fact, Teacher is on day 2.  And Teacher has me in tears of gratitude and relief.  I am cautiously optimistic.  If Teacher is able to maintain her phenomenal patience and slow pace, I am beginning to feel that we might just achieve our aim this year: to make Kesia feel safe enough to be in school.  If we can do that, we can begin to help her heal.

Teacher was the one in our meeting who clearly said that Kesia should not do science for a while since the topic (micro-organisms) would cause her intense worry.  Teacher has been asking her how her hour has gone, and taking the time to find out what worked and what did not.  Even better, Teacher has taken the time to speak to me.  To approach me as one a several adults trying to help a broken child.  Not simply an over anxious mother.  Can you all feel that breath rushing back into me?

It’s only day 2.  But it’s 2 days of success!

Sweet Girl Kesia wants very badly to go to school.  She has a deep desire to do “the right thing” and talks in terms of “trying harder” constantly.  She has not yet understood that she is not bad, nor do any of us feel that she does not try at school.  So the test of this year will come when she finds herself unable to fulfil part of our plan.  Given her personality and her difficulties, this will inevitably happen but nobody can tell when or what that will be.  We have tried to explain to her that the key to our plan’s success is pace – it must go slowly.  If we try to get her in school for two hours before she can do one hour without panicking, then we will fail.  Ask her today, and she will tell you that she wants to do two hours tomorrow.  But once in the school building, she shrivels!! So slow is the way to go!

Asperger’s syndrome comes in many different guises.  The little boy screaming at the school gate and hitting his mummy until she’s black and blue.  The “little professor” in a classroom who will lecture you on the tiniest details of the second world war.  The awkward girl who clearly tries to join in but somehow just can’t get it right and ends up fodder for the bullies.  The child who will talk to you for hours but cannot look you in the face.  The child who comes within inches of your face and fixes you in the eyes before reciting pi to the nth decimal place.  The little girl whose terror of the classroom makes her unable to cross the threshold.  The child who hears an ambulance and “knows” that something dreadful has happened so bursts into tears.

I have experienced all of these children.  Some of them describe Eldest.  Some describe Sweet Girl.  Some are children I have known fleetingly or in more depth.  All of them had a diagnosis of Asperger’s syndrome, and something nebulous and intangible makes them feel “the same”.  Each one of them is unique, wonderful, difficult, caring, loved.  None of them lack emotion.  I would go so far as to say that each person I have known with Asperger’s syndrome experiences emotion to such a powerful extent that they are overwhelmed by it.  Their difficulty in identifying that emotion, expressing it and dealing with it makes it sometimes tremendously painful.  But as often as I hear it, I cannot bear to listen to those who say autism is a lack of emotion.

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