Our journey to Understanding began early. PanKwake is the last of my six children. Her oldest brother was eighteen when she was born. I had even parented one special needs child. So I knew within weeks that PanKwake was different.
As a baby, she cried almost constantly. Only her swing seemed to soothe her. Of course, now I realize that this was the earliest sign of sensory processing issues that for her are marked. It got to the point that I could not do the weekly shop with her. Instead I sent lists with her father and she and I remained contentedly at home.
By the time, PanKwake was two others challenges were presenting themselves. When other children were beginning to actually play together, PanKwake still preferred playing along side of them, called parallel play.
This was when she first began having meltdowns as well. Of course, everyone assumed it was the ‘Terrible Twos’ but I knew better. I had been through those before…five times in fact. Two things set PanKwake’s apart from normal childhood tantrums.
First was how quickly her mood could change. One moment she was playing happily and the next she was curled in a corner on the stairs screaming so violently that I feared the neighbors would call social services on us.
But the other was even more telling of the bigger issues to come. With temper tantrums, if you give in then the child is happy and stops. Not so with meltdowns. Even giving her what she had wanted did nothing once she had kicked off.
I began to use the Big A word then (autism). But my older who was a teaching assistant working with autistic children in schools disagreed. Even I knew that was not quite right. PanKwake was not classically autistic nor was she Asperger’s. But autism was as close as it came then.
Then at two and a half PanKwake began to have seizures. The next five plus years was focused upon those. EEGs, a handful of different medications, and side effects. I began to question…was her behaviors just another sign/symptom of epilepsy? Was it perhaps a side effect of the powerful mind altering drugs? Some of the drugs certainly did exasperate those behaviors.
It was at a conference for Challenging Behaviors in Childhood Epilepsy that I first heard the words…Pathological Demand Avoidance. As I listened to the speaker for the first time all the pieces fell into place. PDA fit PanKwake just like that glass slipper did Cinderella.
But still…what I had heard that day. The outcomes for these children were horrid. Few of them finished school. Fewer still went on to college or had jobs. Some even ended up in the legal system. Yes…jail. That was NOT what I wanted for my precious little human.
The seed had been planted and I am not one to spend much time on a river in Egypt (De-Nile = denial). One weekend while PanKwake was with her father I bought the only book on PDA at the time: Understanding Pathological Demand Avoidance by Phil Christie et al. I devoured it in that time. By the final screen there was NO doubt in my mind.
PanKwake was Pathologically Demand Avoidant.
But I was also determined that her future was going to be brighter than the ones in that book. To be fair, those young people were among the first to be recognized as PDA. There was little known about it and even less help for them and their families. Outcomes are improving even for adults with PDA.
Nonetheless, I made a solemn vow that weekend…
That is not going to be PanKwake! She is going to have the best possible chance of reaching her full potential no matter what…even if it kills me.
I took her out of school within months due to extreme bullying. We were forced down the pathway of diagnosis by the home education officer of the local authority. A path that took over two years to arrive at the inaccurate diagnosis of Autism Spectrum Disorder. They even used the un-scientific and unhelpful term ‘high-functioning’.
All the while I read…and I read…and I read. I went through half a dozen books on Sensory Processing. As many on ADHD. Some on autism but quickly discarded that line of study as I recognized the accepted strategies were not helpful with PDA or PanKwake.
I tried various things. For a couple of years, we did not leave the house without earmuffs or sunglasses whether it was the hottest day of summer or bitterly cold. They were life savers, buffering Pankwake’s #AutisticSuperPowers just enough to allow us to function.
Those years were not easy. I cried…not where she could see me. But I kept trying. I became a super sleuth. A detective to rival Sherlock Holmes. At least when it came to the Why’s of PanKwake. Why? What made her meltdown that time? Did I miss some clue? And always…what could I do better next time?
There was always going to be a next time. There still is…even now. Though the period between those next times stretch further and further each year as she matures. I never lose sight of the fact…meltdowns are a fact of life. But yes, I did learn to see them coming…most of the time. I learned strategies for delaying and minimizing their impacts. Most importantly I learned how best to comfort her during and after.
Each day I understood my PanKwake better. Not autism. Not even PDA. My little human. My PanKwake. Because just as no two human beings are exactly the same so too are no two neurodivergent/autistic ones the same. There is a saying…my autism is not your autism. And that is so true.
Understanding is a process that never ends in #HomeCrazzyHome. Things change. People change. Each day gives us new situations…new opportunities to grow and change.
I keep seeking knowledge even now. These days though it is usually from the true experts…#ActuallyAutistic adults. But even then I have learned that as valuable as they are, as good as I have gotten with my detective skills, there is only one true expert on PanKwake…
These days she is rather good at telling us what she needs…and even why. That is the result of early home education giving her an emotional vocabulary and more importantly listening to her…actually hearing what she said and taking action on it. That has built in her resilience and confidence to communicate her feelings not just to us but to others as well.
As we approach her teen years, we have a solid foundation of mutual trust and most importantly of all that…
- friendly or harmonious relationship…
- adjustment of differences…
- sympathetically aware of other people’s feelings; tolerant and forgiving…
It makes #HomeCrazzyHome a pretty special and wonderful place to live…and our friends seem to think a nice one to visit too.
While our journey is far from over, we have come a long way down this pathway to recognizing that PDA actually stands for…
Pretty Damned Awesome!
But that is our journey…yours will be different. Nonetheless, with knowledge (Mind Understanding) and an inquisitive spirit (Heart Understanding) I believe that you too can reach this place of Deep Understanding.
That your little human too can become #HappilyAutistic and #ProudlyPDA.