This is a copy of my blog entry over at weebly earlier this week.  We’ll call it a transition period and have it on both blogs for now!!

An eventful afternoon today.  Despite an appointment with Kesia in May which had at least given us a diagnosis of Asperger’s syndrome, she had and has continued to have increasing problems in life and at school.  An emergency appointment was sought and unfortunately cancelled by the hospital and so we have waited with a lot of anxiety to see a doctor with enough experience to be able to offer some practical help.  With year 6 looming for her in September and the school at their wits’ end faced with a little girl in such distress we really had all our eggs in this basket.  No pressure for the doctor then!!!

The lovely Dr S was brilliant.  As much as she may not have connected with Zack all those years ago, her manner with Kesia was wonderful.  I love the fact that she chose to speak to Kesia directly, before speaking to me.  Kesia responded beautifully.  It is very rare to see “Kesia” without a mask on.  She goes through life largely as a construct of the people she feels she can be in any given situation.  So we often see “Kesia the big sister”, or “Kesia the carer” or “Kesia the bratlet”, “Kesia the totally mad hyperactive giggler”, “Kesia the good girl” etc…  “Just Kesia” is a rare creature indeed, but how I love her!!  Amazingly, she appeared in that appoinment room.  She was clear and direct about her feelings regarding school (pooey) and the things she finds difficult (too many to mention here).  She told the doctor how much she likes maths, and that writing is fine if she knows exactly what she must write.  The noise and number of people cause her untold distress and she hates being in the classroom…

So we came to some conclusions:  it is clearly terribly important for Kesia to be able to go to school without suffering the anxiety and distress that she has done recently.  The doctor feels that step one is to provide her with a clear, visual and explicit timetable for the whole of the first half of term.  Included in this would be a progressive and slow return to school, eg 2 hours a day for the first week, followed by mornings the next week if the first has gone well.  She needs to know what will happen for some time in the future in order to be able to prepare for it.  The doctor is extremely enthusiastic about Kesia riding so that will be put into the timetable.  She is hoping that funding will be found for an emergency teaching assistant while we go through the statementing process, and also feels that the school I had visited would fit Kesia extremely well.  She is also referring Kesia to occupational therapy to help with her sensory issues and has recommended ear defenders for Kesia’s sensitivity to noise at school.

One of the big and rather momentous decisions is that we should try some medication to help lower Kesia’s anxiety.  I find this a little difficult… we went down this road with Zack and it did not work.  Mostly I remember reading the notice in the medication box and reeling.  BUT… it might be effective and anything that can help her is worth trying.

I finally feel that Kesia’s difficulties have been recognised by someone who has the ability to help her.  We will go and pick up her medication in the next few days and plan to start her on it about a week before school starts.  In the meantime, we keep going.  She is much much better since school stopped, though this by no means life is easy.  Panic attacks are frequent and her obsessions are ruling our lives a little.  But we managed our holiday in France with some really lovely moments, and I’ve even managed to buy her some new school shoes that she is willing to wear!  Small battles won do leave me feeling rather happy!

There is a long way to go and hard work ahead, but I now have someone at the end of the phone who can set the sails blowing a little!

To-Do list:
DLA form (oh glory, here we go again)
Pick up medication
Get statementing paperwork ready for the 5th September
Somehow get the term started for her (though I think that will have to wait until the 4th September meeting…)

Advertisements