Saturday, 10 September 2016

Progress and Hope

Once upon a time, we had a little girl who needed help to dress, go to the toilet, and eat.  A child whose daily rages broke furniture and left teeth marks.  A child who could not hold still, even to fall asleep; whose slurred speech consisted largely of repeated questions or phrases, or toilet words in a sing-song voice, punctuated by harsh vocal tics. A child who would learn a new skill or information only to have it disappear as if it never had been.  A child with whom it was becoming difficult to interact without triggering spitting, hitting defiance. 

It felt like we were losing our beautiful, precious, special child behind a screen of challenging behaviours, symptoms of her neurology.
I don't like to think about the reality of that time, much less describe it, and still less post it indelibly on the internet for all and sundry to read.
BUT ...and it's a big 'but'...
I want to give other families who are where we have been HOPE that it can get better.
Right now, we have a child who eats well, sleeps less than average but well enough, is growing and learning at a rate that has made up much lost ground, and who fills our home with joy every day.  There are still meltdowns, but far, far fewer, and with far less intensity.  She speaks clearly and eloquently most of the time, and can tell us about the wonderful creative ideas she has.  Tics are minimal, and mostly unobtrusive.  She plays and works calmly at her projects, absorbing information in depth and detail. She makes her own bed, brushes her own teeth, and is learning to help pick up toys.  She has performed on stage in a dance performance, and makes beautiful paintings.  It's been like this for so long now that it's hard to remember how it used to be.
We don't peddle chocolate-covered miracle pills here.  These changes were brought about by the grace of God and by this child's own strength of character; all we had to do as her parents was to love her through all her challenges and clear the path for her to make these great leaps forward.  And it took time.
I'll write in more depth about the steps we took to do this as I get time, but I don't want anyone to read this blog as I post about PDA strategies and think I'm talking about "mild" autism or PDA or Tourettes, and lose hope thinking that their situation is much worse.  Trust me, we've been there, and it was pretty bad.  But it got better.
Finding out about PDA was our first step in getting to where we are now.  We stopped all attempts at conventional discipline or motivation, and the upward climb started there.
I'll be saying this a lot, and in as many ways as I can think of, because I think this is essential to understand when dealing with PDA:
By "behaviourist strategies" I mean reward and punishment, clear and consistent consequences, star chart and naughty-step style approaches.  In fact, they can make things worse.  They might work a little, for some people with PDA, in a limited way, but even then the cost is probably not going to be worth it.  These strategies increase the pressure to conform to expectations, which increases anxiety, which increases the defiant and explosive behaviour that is so often a part of PDA. 
So dropping all of the above completely was our first step to setting our child free to move forward again. 

We had to first of all get her anxiety levels down to a baseline from which she could engage without being hampered by her own defensive reactions - reactions that happen to look a lot like extreme hyperactivity and deliberate defiance.
We did a "demand detox", dropping all unnecessary demands, and keeping as many things negotiable as possible.  It took about 3 months before she was ready to start reintroducing demands, very slowly and gently.
Then we set to work on sensory issues.  As we started looking for triggers, we realised that Sensory Processing Disorder (this isn't a separate diagnosis, this comes along with autism) was underlying a lot of the challenging behaviour and outbursts.  Sensory sensitivities also contribute to anxiety, which in turn can manifest as defiance. 
We had already taken our daughter out of school, so we went through the home environment and identified all the sources of problems.  Noisy toys, scratchy jumpers, all went out. Temperature, sound, sensation, smell, cycles of activity and rest - all had to be considered and addressed. The more triggers we found, the easier it became to find them, so although this was a daunting task at first, it went quickly and was highly effective, with tangible results after each change.
Through all of this, as always, we worked to keep our child's physical needs met as optimally as possible, and this got easier as things got easier for her.  Sleep, food, warmth, and physical care, I believe, are opportunities to fill a child with a sense not only of physical well-being, but also of being nurtured and loved. Children need that sense of nurturing in order to be able to fully thrive.
The one sort of set 'tool' or method we did bring in was Parenting By Connection.  We already were into what might be called attachment parenting or gentle discipline, not that we ever saw ourselves as using a particular style, but with the basic philosophy of the relationships within the family as being paramount to raising children.  We haven't implemented the PbC parenting tools in a set way, but they are very simple, and lay out a way to maintain connection and help children with big feelings in a positive way, and I think would be helpful to parents who are looking for specific ways to help their children who are struggling with behaviour or emotional regulation.
Similarly, we had already come across Ross Greene's book The Explosive Child. His system of Collaborative Problem Solving lays out what is essentially good parenting for any child in a way that is easily accessible to parents who are in the midst of dealing with extremely challenging behaviour. 
This is a pretty short and un-descriptive basic list of how we manage PDA autism and Tourettes Syndrome in our house, but it really is just meant as a quick introduction, and to give you an idea of how we have had good results using a wholistic approach.
PDA (which is a form of autism) and Tourette's Syndrome (which involves a whole lot more than just motor and vocal tics) affect every aspect of life for our family, not just for this one child.  It might seem extreme to explain the adaptations we have made to our whole lifestyle, but the challenges this child deals with are pretty extreme, too.  We couldn't afford to spend months or years trying out different management measures piecemeal.
We needed to work with a management plan that covered everything, because these conditions affect everything. 
And it has been worth every late night researching and organizing, worth every hour of effort, because we have our little girl back. 

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