I remember when I first discovered Pathological Demand Avoidance. I had gone to a conference entitled Epilepsy and Behaviors for professionals. As I listened to the speaker for the first time everything clicked into place with PanKwake. But the way this woman spoke about PDA like these children were not even human…I was devastated.
Now as the mother of six, PanKwake being the youngest, I KNEW that something was different with her since she was a baby. By age two I was using the Big A word. But it just did not quite fit. She was too sociable and imaginative. So I dismissed my concerns as had a health visitor and a SENCo (Special Educational Needs Coordinator).
But now I could not anymore. It made too much sense. So I bought what was the only book on the subject at the time. While PanKwake was with her father that weekend, I devoured it. And I cried…and cried…and CRIED. Especially when I came to the part about outcomes.
In my heart though, I knew. I KNEW. And I can still remember what I said…and I did say it out loud. A convocation of sorts.
NOT MY CHILD! I will give her the best possible chance in life. Even if it kills me.
I did not care about qualifications. I did not care about careers. Or success as this world defines it. I did not even care if PanKwake was rebellious to societal norms…she’d just be following in Mommy’s footsteps.
The only things that mattered to me were that she could do the things she wanted to do when she wanted to do them.
- Self-esteem = Happiness
Those are what I wanted for my child. What I was willing to lay down my life to give her.
And yesterday…all my hopes and dreams for PanKwake came true.
She has been on one of her sleep all day and up all night routines. But her best friends’ were having a birthday party…and they had planned for the pool near us, the one PanKwake is accustomed to, just so she could go.
MY plan was that she would sleep four or five hours and we would go to the party…perhaps a bit of rock climbing…IF we could manage it.
That was NOT what PanKwake wanted. No, she wanted to stay up…over 24 hours. She wanted to go to home ed sports. Then adventure play. Then climb. Then pool. Then boardrider (indoor surfing). She wanted it ALL!
Now I admit…I was scared. She has been seizure free for fifteen months now. But sleep deprivation has always been her primary trigger. So I was risking ALL that…and fits scare me worse than any meltdown ever could. Even when she elopes (cutesy way of saying runs away). To say I was reluctant to her plan would be to trivialize it.
But my role is to enable her.
To help her to achieve what she wants…not impose my wants, needs or dreams upon her. So I breathed deeply and trusted…expressing my concerns. And allowed her to do just that…self-determination.
It did not end there though. She excelled at self-regulation. When she got tired, she started to blow bubbles and slip and slide around the kitchen until I was ready to leave. Rather than use her buggy, she walked into town…to stay awake. At first she sat with her friends and played on the iPad but when she got to feeling sleepy she got up and joined in the football. And even when she did not make it all the way to the top of the climbing wall…first time in weeks…she managed not to meltdown. She swam and surfed.
After she had done ALL of that…and been up for 25+ hours I started to get really nervous again. I found her and Mog. I explained my concerns about the seizures and how if she pushed too hard and did have one then we might have to go back to the doctors and take medicine again. She made the decision to leave. Again self-determination. She fell asleep on the way home in her buggy.
And yes to the self-esteem and happiness as well. She knew how well she had done.
But it was even more than that. PanKwake has friends. Friends that go out of their way to arrange parties that ACCOMMODATE her needs. Friends that enable her.
Thank you so much to Cookie Monster Jr., Pineapple and their wonderful parents. We are all so blessed to have you in our lives. We don’t take that friendship for granted. And that goes double, triple to our beloved and indispensable carer, Mog, who held my hand all the way home after she fell asleep!
Yes, I know that my job is not really done. There will be challenges ahead. There will be sensory overload. There will be metldowns to come. PanKwake will always be #NeuroDivergent.
But yesterday showed that neurodivergence does not have to be a disability. Not when the people in your life enable you to do the things that you want. Not when they make accommodations. Not when you have been given the skills to self-regulate your sensory issues and cope with the external environment.
Yesterday was just another of those moments when I know that I am doing the right thing for my neurodivergent daughter…and that she will have that chance to be all she can be. Not in spite of her #autism but because of her beautiful, logical, complex brain that is always showing her Mommy…