The very first thing that I did after admitting to myself that PanKwake had Pathological Demand Avoidance was…
I read. I read everything I could get my hands on. Of course, there was only that one book…Understanding Pathological Avoidance by Phil Christie et al…on the subject itself. And at that time the PDA Society did not have its brilliant website with so much information. It was still in its infancy and only had a parents’ forum…which I did join. But honestly…like the book…I was left searching for MORE…
So I started reading on related topics…ADHD, Asperger’s, Sensory Processing Disorder and behavior management. My Kindle library and bookshelves are still full of books. Some of them I read to the end and consider almost bibles. Others I barely got started before discarding as not something that would work for us.
I hate bibliographies…sources cited…and the like. But for the sake of not duplicating work…and as a lifeline for those desperate to make changes while I am busy writing this blog…here are a few MUST reads…
Of course the first place to begin is the PDA Society website. It is brilliant and full of information, sources and strategies to get you started. Every single one of their Strategies to Try at Home is spot on. These are the foundations…the cornerstones of my method. Best part is…this one is a FREE start. So go to it.
As hard as it was for me to read…Understanding Pathological Demand Avoidance is still the definitive book on the subject by the researchers who first began this work. But as I said keep a few things in mind… 1) it is written by professionals for professionals so not an easy read 2) it was written early-ish in the PDA timeline so much more is known now about how to help your child 3) so don’t let the ‘results’ they talk about scare you too much. You can do better…PanKwake proves that.
These days there are two more books on the subject. I read Jane Sherwin’s My Daughter is Not Naughty just a few months ago. But I have not read Can I Tell You about Pathological Demand Avoidance Syndrome simply because it is a simplified Understanding PDA…and I have already read the long form. But if you find reading professional journals challenging then this might be a better bet for you.
From there I jumped to two parallel lines of research…
- Accommodating the Sensory Issues that are the root cause of all forms of autism and
- Behavior Management.
I have read and used so many books on Sensory Processing Disorder that I honestly cannot recommend a single one. Of course, The Out-of-Sync Child by Carol Stock Kranowitz was one of the first and remains one of the best. But like Understanding PDA, it is not an easy read. Sensational Kids and Raising a Sensory Smart Child are two others that I specifically remember reading in this time frame.
When it comes to behavior management though…there is only one place to go for me….
Dr Ross Greene’s Lives in the Balance and his book The Explosive Child. This one is a game changer, folks. A paradigm shifter. If you have no time or money for anything else I say…get to this website. No excuses. This man is not about making money but about changing lives. He puts almost everything in his book…out there for FREE on the website. Because he genuinely wants to help children and families to cope better. I am almost certain that his is a name and strategy that will come up frequently in the days/pages ahead.
Now I am going to get a bit hinky on you. All of what I have suggested so far is pretty common, accepted and the first line…these sources are where I diverged from the norm. And while I am not recommending any specific path here, I think it is important to give credit where credit is due…and to cite those sources.
The first one that changed my view of autism to AWE-tism is actually about a related brain difference…ADHD. Thom Hartmann’s The Edison Gene: ADHD and the GIFT of the Hunter Child got me thinking. Is this really a disease/disorder? Or perhaps is this an evolutionary adaptation? Are our children the next jump in human evolution…X-Men if you will?
I went a bit far out there with that line of thought. I began to read New Age books on crystal and rainbow children. While I do not espouse those theories exactly, they too had an influence on my way of looking at my child.
I admit that pop culture has had its influence too. The X-Men movies in particular. And, folks, I am definitely more Magneto in my thinking and strategies than Charles Xavier. Just be warned…
But the greatest mind of our time…and also almost certainly Awe-tistic…Albert Einstein said…
So is it possible that the Awe-tistic brain holds the key to unlocking a better and brighter future than the one we face today? But I will leave that one hanging in your mind for later…
To be clear here…I believe in everything that these sources say (well maybe not the New Age ones…but they served their purpose in challenging my paradigm). They are the strategies that we use. And if you follow just them…you’ll be doing pretty good.
My work is simply the next step…the evolution of those. As I said it is about not just surviving but THRIVING. It honestly is about LIVING HAPPILY EVER AFTER WITH PATHOLOGICAL DEMAND AVOIDANCE.
But before you can tackle that…take a bit to educate yourself on these other sources. Catch up with the basics. Then we will move forward into our Happy Places.
If you feel that your mind is about to explode…trust me I have been there. I understand. In another life, I went to a Charismatic mega-church. I still remember one preacher there talking about TRUTH. He said that the world was full of preachers and teachers spreading THEIR truth. But he believed that the holy spirit inside of the individual gave them the ability to recognize the truth for themselves. He had this lovely saying…
Chewing and Spitting!
You take it all in. Then you digest it up…you chew on it. And you spit out the bits that are too tough for you. That is what we all need to do with knowledge.
Some of you will spit out all I have to say. And that is as it should be. Goddess knows I understand how hard this path has been for us. You will find YOUR path. The one that works for you, your child and your family.
But I am writing this for those of brave or perhaps fool-hardy enough to want MORE!!! To want more than accepted strategies of surviving. Perhaps like Magneto, what I am espousing is revolution. I can certainly feel that way when you are going head to head with society and ‘experts’.
Along this difficult path I have seen so many parents, children and families fall by the wayside. Beaten. Defeated. Helpless. This blog/book is a hand-up for some of them.
Tomorrow we jump into the meat of things…so take a bit of time to look through those resources…those strategies. Do some chewing and spitting of your own!