Well my last post on Mollie and her progress was so positive that even I could not believe the huge steps forward that Mollie was making.  But then the period of ‘shutdown’ that is so familiar to so many parents, hit us with a much unexpected boom!!!

She had achieved so much but then she completely shut down and retreated to her room for several weeks.  When this happens I am often perplexed and confused on how to move on in a successful manner.  A few days of shutdown is one thing but a few weeks, not knowing when it will end, is another thing all together.

It was time to reassess and to re-group.  Ok, so she had done tremendously well in accessing a home Education group, groups for children with emotional difficulties, playing out, going for walks and so on.  I really and truly believed that we were out of the woods when it came to self-imposed social isolation but I was oh so wrong!

The anxiety associated with accessing the outside world coupled with difficulties playing on line with peers ultimately took their toll.  She endured and she controlled herself but this only resulted in her needing major down time in order to recover from the onslaught of the NT world.  The good news is that difficulties with social interaction no longer involve meltdowns of indescribable proportions, the bad news is that they do involve self-harm and a need to completely hide away.  Difficulties are now internalised rather than externalised.  She removed herself from the world and her skin on her arms and face have been picked and picked and picked.

I have cried, I have worried and I have been at a loss of what to do next for the best.  Do I leave her to come out of this situation naturally and in her own time or do I try to speed up the situation?  As ever, with PDA, there are no wrong or right answers, as parents we can simply only go by out gut instinct.

I left her to it but also went to efforts to reassure her and to remind her that I was here and that she was not alone. I sought advice from a fellow parent whose child also has an extreme presentation of PDA and she also helped to advice given her experiences of her own child.  Mollie’s sleep was completely upside down and so it was hard to reach or to engage with her given that she slept during my waking hours.

I began to use the first few hours of the morning when we were both awake to simply sit next to her while we both coloured.  I didn’t instigate communication or present demands we just sat quietly and coloured in together.  In silence and without words she knew that we were together come ever what would be.

Eventually she began, very slowly to re-integrate back into family life.  Wanting to watch a film with her dad or asking me to do something with her all became positive steps in the right direction.   In fact just coming downstairs and leaving the comfort of her bedroom or mine, whichever one she had chosen for safety, became a major achievement and a sign that things were moving in the correct direction.

On Saturday Mollie came to a craft fair with me in order to sell our glass art. On Sunday she was up and about watering the garden, going out with her dad to take pictures and basically seeking more social engagement.  Today she showered, washed her hair and wanted to go out. We have spent a lovely day together shopping, eating out and watching quizzes on TV.

As ever the cycle of social interaction and the need for ‘down time’ continues and from this I continue to learn.  The good news is that periods of ‘down time’ are shorter (weeks rather than months or, in the past, years) and the periods of ‘out time’ are longer and more successful.

It really is a case of two steps forward and one step back but the ratio of 2:1 ensures that we are moving in the correct direction.

This is a picture of Mollie today and how she feels about herself.  Underneath the robust exterior of a child with PDA is often a very fragile ego which this picture and the accompanying comments explains in such a concise and honest way.

Today I got out of bed had a shower