As all of you know from my Autism Acceptance month posts…I HATE the word AWARENESS. Because it just does not go far enough to helping individuals.
BUT this morning’s doctor’s appointment was a reminder that when it comes to Pathological Demand Avoidance…autism with demand avoidant traits…or this unique presentation of NEURODIVERGENCE…
We HAVE to Start Somewhere…and that may be AWARENESS!
Even as strong as I am, I came back from that appointment and begged Cookie Monster for a cwtch. Why? Because I was LECTURED on Parenting 101.
I am supposed to ‘condition’ my child like an animal (yes, the doctor actually used that analogy with me…like it was a good thing?) to go to bed at a more appropriate time. Regardless of the fact that she is getting enough sleep, she is happy to control her sleep and wake cycle and by doing so we avoid meltdowns.
For now I am supposed to follow her lead and watch for her to yawn. Then I am to tell her it is time to brush her teeth. Oh right…that is a DEMAND and certain to elicit a ‘fight’ response from her. You can bet she won’t be sleepy anymore then.
Then I should read a book to her. Oh wait…PanKwake won’t allow me to read to her anymore. Something to do with me pushing her too hard a couple of years to read. Meltdown number two.
Then I am supposed to turn off her light. She falls asleep with the light on. She crawls under her covers for the darkness. But even if she did wake up in the middle of the night…she immediately called for me to turn her light on…until we got Echo to voice activate it. We even have to leave hall lights on.
Yes, I tried explaining about PDA…and how ALL those things would NOT work with PanKwake. But as with other ‘experts’ I was dismissed. I am certain that they consider me a ‘bad’ parent. Permissive. Out of control. Crazzy even?
Yes to the last three but that does not make me the first.
But then I get to thinking DEEPER…it is really all about PDA? Would the recognition of this unique form of autism and the differing techniques required to parent a child with it be the answer?
Or is it that we as parents, ‘experts’ and society need to go back to the drawing board to examine our views of children and parenting?
For a doctor to suggest that it is beneficial to CONDITION (his word not mine) a child like you would a dog…DISGUSTS me! But that is what is acceptable!
While treating your child like a human being with feelings, thoughts and rights of her own = BAD parent.
I have contended for some time that most of the strategies espoused by the PDA Society for ‘managing’ behavior are actually just GOOD parenting. PERIOD.
One of the characteristics often described in demand avoidant children is no recognition of societal hierarchy. At the core they see no difference between themselves and adults. I remember PanKwake often lecturing mothers on the playground how to care for their babies. I also remember how proud I was of her care for the homeless. To my daughter…that homeless man had the same worth as the Queen. And she as a child has the same worth as me or Cookie Monster.
WHERE IS THE PROBLEM WITH THAT???
But it all goes against our Western view of children, the role of parents and at its most fundamental it calls into question the very existence of society.
If it seems I have gotten off of track about PDA Awareness Day…I have. Because just as I believe we should CELEBRATE neurodivergence/autism…
Today I want to CELEBRATE Pathological Bu!!$£it Avoidance!
I want to CELEBRATE my beautiful, intelligent and independent PanKwake as a unique neurodivergent individual with something to teach us all…
You are so much more than PDA…autism…or any other label.
You are a wonderfully unique human being.
And I am honored and privileged to know you…let alone serve as your parent/mentor/role model…
- Even when you keep me up half the night
- Even during the worst meltdown ever
- Even when people judge us.
I love you my truly special child…and I really like the person you are.
In this house…PDA = PanKwake Does Awesome! And that is every day of the year. Not just…May 15th is PDA Awareness.