I first heard the term Pathological Demand Avoidance when PanKwake was five.
She had been diagnosed with epilepsy when she was three, but had not been referred by the pediatrician at the local hospital for any further testing. That woman seemed to think that as long as PanKwake was not clogging up her A&E with tonic-clonic seizures then everything was fine. As a mother, I knew that it was NOT. I knew that my child was having seizures in her sleep. But I could not get this women to listen to me.
So I did what would have worked back home in America. I snuck/sneaked into a conference on epilepsy…for professionals. Not really sneaked…I registered and paid. It was just that it was a conference for doctors, nurses and Special Educational Needs Coordinators (SENCo). Not for parents. Even ones with a degree in Health Education…which was how I managed it.
My goal was to collect names of doctors, emails and perhaps find just one that would agree to see PanKwake for a second opinion. That plan was a total BUST. It does not work that way here in England. But it was still worth the time (all day) and cost (only £30 or so). Because the topic was Behaviours in Children with Childhood Epilepsy.
I heard loads that day which would fuel my strategies for managing PanKwake’s behaviors for years to come. My favorite was from a doctor/researcher whose name I have forgotten. He argued that children did not need a string of labels. That the root cause was the same. A brain that does not work right in one area is likely not to function as well in others. The man also gave me the best discipline advice going…get them out and keep them moving. They will tire themselves out and not have the energy for ‘mis’behaving.
But that day I also heard from two young researcher who had taken up the gauntlet of Pathological Demand Avoidance from Drs Elizabeth Newsome and Phil Christie. I was nodding my head to every single thing that these women said. PanKwake checked ALL of the boxes. ALL of them!
Now I had known since even before she began having seizures that my child’s development was not ‘right’. After all, she is the last of six. So I was well aware of what ‘normal’ was. And this child was not.
Every time we left the house my child exploded. Crying, kicking, screaming, thrashing in her buggy so violently that she almost came out. Saturday shopping was a night mare. Going out was impossible. Of course, now I know about sensory processing issues I totally understand. No wonder she hated the butcher shop above all others. Even now she is practically a vegetarian. The smell of meat or fish is among her least favorite.
And she was not playing with other children in the ‘normal’ way. Oh, she was and is an extrovert. But she did not want to play WITH them…just around them. It is called parallel play and is common among babies and young toddlers, but not older children.
Of course, the kicker was that PanKwake did not speak until she was three. Now she has not shut up since. But I knew that failure to hit verbal milestones was a marker of autism.
I had in fact been using the Big A word since PanKwake was two. But something just did not add up. She made eye contact…most of the time. She even appeared sociable. Especially with adults, younger children and even animals. The problems were with her peers.
It just did NOT make sense. She did not fit either autism or Asperger’s criteria. Even the early years SENCo who came in and did a cursory evaluation said so. She felt that yes, something was not quite right. But not high enough to rank a full autism evaluation. And then the beautiful prejudice…she’s a girl, she’ll catch up.
But she wasn’t. She was in Reception now and in fact she was falling further and further behind her peers. She was having more behavior issues…at least at home. I learned later that this too was common with PDA. These kids have enough social acumen to mimic behaviors in school…to fly below the radar. But the pressure of doing that all day then comes out at home.
BUT listening to these women…ALL the pieces just fell into place. I sat there thinking…
That’s PanKwake.
At the same time, the way they spoke of Pathological Demand Avoidance…heck, even the name. It was not a label I wanted on my child. Not something I wanted to accept.
But I saw enough of it in PanKwake that I went home and bought the only book available on the subject…Understanding Pathological Demand Avoidance by Phil Christie et al. While PanKwake was with her father that weekend, I devoured it. It is a good thing that it was the Kindle edition. A paperback would have been water logged with my tears by the time I was finished.
As much as I found myself identifying with those parents…saw my child in those pages, I was frightened, disheartened. Heck, I was terrorized. This book was written in the very beginning of the research into PDA. As a result, the people in it had not benefited from any real assistance to manage their behaviors. The end results were not good.
I can still…over five years later…feel that pain. Tears spring to my eyes at that younger me. I wish with all my heart I could go back there and hug her. Tell her…it’s going to be OK. PanKwake is going to be fine. You are going to make it.
That is exactly why I am writing all this now. For all those other Tara’s and PanKwake’s out there. Who are frightened by those words…Pathological Demand Avoidance. Who have read or are reading other books on the subject and feel overwhelmed at the path their family is on.
I want…no, I NEED to offer them hope.
It does not have to be like that.
PDA is not a life sentence.
Pathological Demand Avoidance is actually the BEST thing (other than Cookie Monster) that has ever happened to us!
And if I could change my daughter…I would not!
I don’t just love my daughter…I LIKE her. I like the unique person that PDA has crafted her into. I like the way her brain thinks. I believe from the bottom of my heart…
Tomorrow I will tell you how I got from crying and disheartened on the couch to here. Well, I will begin to anyway. After all that is the subject of this whole month long blog/book.
Self-Directed Learning & Neurodiversity 