This month is National Novel Writing Month. I have participated five or six times in the last decade. The thing is that this year I am NOT writing one of my novels. Instead I am writing two, yes two, non-fiction books that I have been meaning to write for months. And I am doing those rough drafts right here on my blog.
The first book is as of yet untitled. I say it is about parenting your PDA little human but honestly I believe that the strategies in it are best for ALL children…neurodivergent or neurotypical. I am sure that the sections in this one will sound familiar to any of you who have read my blog more than once:
- Unconditional Love
Yeah, after some thought, I have snuck a new one in there on you. But you will have to wait awhile for me to get around to this new material.
The second is RadiCool Unschooling Your Neurodivergent Little Human. There are books on autism, ADHD, and dyslexia. There are books on unschooling, a couple even on radical unschooling. But none on why RadiCool Unschooling works well for the neurodivergent. Hopefully, in a month there will be. Well, the rough draft anyway.
So what am I waiting for…let’s jump right in…
This is a book that I have been meaning to write for sometime. I have read most of the material out there on Pathological Demand Avoidance (PDA). I even use most of those strategies on a daily basis with my daughter PanKwake. The trouble is…
Those strategies do NOT go far enough.
Oh, they are perfectly adequate if you just want to survive. Get by on a day-to-day basis.
But if you want your child to be truly #HappilyAutistic and #ProudlyPDA. If you want to enjoy parenting your little human. If you want peace, love, and laughter to reign in your home. If you want to LIKE and not merely love your Pretty Damned Awesome child…then you need more.
Let me say know that I am NOT saying there is anything wrong with those strategies. They are good ones…if you do not know them and are not using them then check out these two sites before continuing here PDA Society and Lives in the Balance.
They work hand in hand with these. What I am sharing with you here is the next step. Like going from a Bachelor’s degree to the PhD program. Few, if any PhD programs, will take you without a Bachelor’s because it is foundational to those further studies. That is how I see this book.
But unlike those strategies that are about things you can do with and for your child, this is about YOU. Changing how you see your role as parent, your child, and even yourself. In some ways that is much, much harder than to merely use a strategy.
Because it requires CHANGE. Heart and mind change. Growth as a person. That is never comfortable. Looking into a soul mirror and examining not just the what you do but the WHY is scary. Seeing your true beauty…and your ugly takes courage.
That is the journey I am asking you to take. It won’t be easy.
And sad to say it does not get any easier the further down that road you go. The freer you become of the constraints of society and culture that embed your connecting with your Pretty Damned Awesome little human the more you will offend people. You will lose friends, maybe even family. You will begin to find the world shallow.
So why would you do it?
Only one reason…HAPPINESS! Yours. Your little human’s. And your family’s.
This is about more. Going beyond the ordinary of survival that I hear so many parents of autistic humans talk about. I have never been the type of person that wanted to merely survive anything. I want to THRIVE. I want to kick ass and take numbers.
And I believe that there are others out there like me. Certainly not all. Maybe not even that many. But they are out there. They are doing all the ‘right’ things and getting through. But they are searching. Looking for MORE! I hope they find it in these words.
So what gives me right to write this book? What are my credentials? What makes me an ‘expert’?
While I do hold a degree in health as well as a Master’s, that is not from whence my expertize comes in this case. I became an expert in PDA the hard way. Sleepless nights. Meltdowns including some violent and others where PanKwake did a runner. I have fought the systems for my little human. But above all that what makes me a true expert is the joy of getting to know…truly KNOW…my Pretty Damned Awesome little human.
Let me tell you about PanKwake. First of all, relax. Not even I am crazzy enough to actually name someone PanKwake. That is her YouTuber and gamer name. The one that she choose. The on-line and public persona. I use it in order to protect her and give her some anonymity.
PanKwake is the last of my six, yes six, children. She is eighteen years younger than the eldest and five years between her and her younger brother. So needless to say, I knew very early on that something was not ‘normal’ about this little human.
As a baby, she needed constant rocking to soothe her. She still loves swings and motion. As a toddler, I noticed that she did not actually play with other children, but merely along side of them. This is called parallel play and is normal stage of development in all children, but PanKwake’s play remained parallel well past the age when others began to actively interact.
But there were other signs of her differences as well. I could not take her out of the house without her crying and screaming. It got to the point that I sent her father shopping while I stayed home with her.
As for ‘terrible twos’, that does not even come close to describing it. Her screams were so high and shrill that I feared the neighbors would call social services. They honestly sounded like I was pouring boiling water over her. What truly set them apart from tantrums was that once they began, not even giving her what she wanted would stop them.
Of course, the thing that sent me pleading to the health visitor (UK nurse for babies since children here do not have pediatricians unless chronically ill) was the fact that at two and a half PanKwake did not talk. Well, not beyond yes, no, Mama, and Dada. When others were beginning to use three and four words sentences, she barely grunted. This was the first opportunity for early intervention that was missed when we were told…she is the youngest, she does not talk because you don’t make her.
When PanKwake began nursery at age three, my concerns were validated. The very experienced manager of that nursery saw the same communication delays, sensory issues, and mood swings that I had noticed. Once again, the system failed us when the Special Educational Coordinator (SENCo) came in to evaluate PanKwake. After spending only one hour one-on-one with her, the woman pronounced…Yes, she is behind. But she is a girl. She will catch up.
But the bottom fell out when PanKwake began Reception (Pre-K). In a classroom with twenty-seven other four-year-olds and just two adults, one of whom was a first year teacher, PanKwake learned to do what so many autistic people do…MASK. She learned to bottle it up, keep it all inside, and pretend to be ‘normal’.
The problem is that masking is not sustainable. By the end of the school day, she melted down each time it was time to clean up the toys and put them away. For me as her Mom getting home became a nightmare. A fifteen minute bus ride was impossible for her since she was on sensory overload already. So we walked. Stopping at parks to let her run, jump, play and self-soothe.
Even her best attempt at masking though was not enough. She was different. The other children knew it. With the exception of a couple of friends, PanKwake became the brunt of bullying. The bright and happy little girl that I had entrusted to the school disappeared. She was replaced with a withdrawn shadow of her former self who asked me dozens of times each day…Mommy, am I ugly? Am I stupid? Am I dumb?
When her father and I took the issue to the school, we were told that our child…needs to grow a thicker skin. When we pointed to the Zero Tolerance Bullying Policy, we were told…that is just political correctness. That is not how the world is. So we came to the decision to home educate her…and it is the best thing we ever did for PanKwake. But that is another book.
Even after removing PanKwake from the school system, our battle was not over. The next two, almost three, years were consumed with doctors, psychologists, ‘experts’, evaluations, and tests. Yes, she has ADHD. No, she does not. Sensory Processing Disorder? PDD-NOS? No, her cognitive abilities are too high. Autism?
In the end, those ‘experts’ decided on the autism label. But that was not quite right either. I knew the truth though. Having discovered Pathological Demand Avoidance years before while PanKwake was still in school, from the moment I heard the description…I KNEW. When I read Understanding Pathological Demand Avoidance by Phil Christie et al, it only confirmed it. PanKwake checked ALL the boxes.
So I began, even before all those ‘experts’ and tests, to use those strategies that I highly recommend for you. And things got better. I became a detective of sorts. What set PanKwake off? What were the triggers of her meltdowns? How could I help her best? I still do all those things, thankfully these days most of time PanKwake is better at communicating what she actually wants/needs and sometimes even why.
But as I said surviving has never been good enough for me…and certainly NOT what I want for my children. When I first read the Christie book, I sat on the couch and cried my eyes out. Especially when it came to the section on the outcomes…what happened as these little humans became adults. Few finished education, let alone college. Few had jobs, let alone careers they loved. And some even ended up in legal trouble.
Me being me though…after those tears, I dried my eyes and made a commitment…
Not my child! I don’t care if it kills me. My child is going to have the best chance at reaching her full potential.
And so began our journey. Of course, it is not finished yet. This is life after all. A journey that never ends. At times, I have felt like Odysseus, Jason, or Hercules. Like every other parent ever, I have despaired at times. And I have scaled mountains I though beyond my abilities.
At this point, I feel like the biblical character of Abraham. After wandering in the desert with his people, god takes him up onto the mountain top to show him the ‘Promised Land’. As PanKwake approaches her teens, I am increasingly seeing glimpses of the strong, opinionated, and intelligent woman that she will become. That she does become a little more each day.
That is my motivation for this book. To share our journey. To encourage those others that are wandering in the desert that there truly is a ‘Promised Land’. And that their child and they have every bit as much a chance of scaling those mountains as we have.
Over the next pages, I will share with you the five steps or keys that have unlocked this magical adventure for us. That have produced a young woman who is truly #HappilyAutistic and #ProudlyPDA. If this book helps even one family, one little human along the way, then it has been worth it.
Join me know as we examine in more detail those keys…
- Unconditional Love