A day and a half late. But the reason for that ties neatly into today’s thoughts on living a beautiful life on the autistic spectrum…even with Pathological Demand Avoidance (PDA).
The PDA society website lists this one as…
Balance tolerance and demands.
In other words…like every other human being on this earth…our children will have good days and bad. That should come as no surprise to anyone. But the truth is that our societal directive on parenting…keep tight control of that child…makes absolutely no allowance for this.
It has always saddened me that we as parents and a society make far greater demands upon our children than we do ourselves, our partners, our friends or even strangers.
If your best friend came to you in tears…would you say ‘Shut up. I’ll give you something to cry about.’ No, you would hug her and listen as she poured out her heart. You would feed her chocolate or ice cream and come up with a plan. Do our precious children…autistic or neurotypical deserve any less?
And as for those bad days…we make excuses and allowances for ourselves, our friends, even the nasty strange in the line (queue) at the store. We openly say…they’re just having a bad day. But when our child is whiny, on edge and crying? No, we say things like…’why are you always like this?’ Again…why are our children not allowed the same courtesy?
So what does this have to do with this blog being late? Or PDA even?
The reason this blog is so late is that after all that bragging I have been doing on PanKwake’s remarkable progress and growth, she has kept me up much of the past two nights. Last night I literally got maybe an hour nap. And I was up solid from 3:21 AM dealing with meltdowns. So I have been exhausted and sleep came before writing.
Does that make me a braggart? Unrealistic? A liar?
No, PanKwake has made astounding progress. She has better social skills than anyone I know on the spectrum…and only getting better. Her communication skills too are far above her peers…even many neurotypicals. And most important of all, she is HAPPIER than almost any child I know. Period.
No, what is means is that my child like everyone else has her bad days…or nights.
To put it bluntly…
THERE IS NO CURE FOR AUTISM!
She will always struggle with emotional regulation, her sleep patterns, and especially the root challenge of all forms of autism…SENSORY OVERLOAD.
And given this move, workmen in her house, having to go back and forth between old and new houses, and the noise…no friggin’ wonder. It is to be expected.
But while the PDA Society’s list focuses upon your child…I think it is just as important or perhaps more so to frankly discuss YOU. The impacts of these low days on you…
The danger is…expecting too much from your child. Just because she could do so much a few days ago does not necessarily mean she can do it…EACH AND EVERY DAY.
But it is only natural when we see huge leaps and bounds of progress to exhale with a huge sigh of relief. To think the worst is over. To perhaps even doubt the impact that autism will have on your child and you for the REST OF YOUR LIVES. Let me say it again, folks…
THERE IS NO CURE FOR AUTISM!!!!
And while we all have our bad days…theirs may just seem a little more overwhelming. Like everything about them it is MORE INTENSE.
As tough as it was though…if you had seen us laughing and joking at the breakfast table you would not have known a thing was wrong. You would have never believed that I had had almost no sleep. And that Cookie Monster too had had a rough night and been woken up by PanKwake way early…with her new microphone and boom box no less.
On days and nights like this, the only thing to do is recognize that it is NOT personal. Your child is not out to get you. And then just roll with the punches…do your best…and laugh. Because the truth is that sometimes you have only two choices…to laugh or to cry. And trust me…laughter is better…most of the time…and especially around them.
So here is the bottom line…what will tonight be like? Or our busy day tomorrow? Or the next?
I have no idea…but then too honestly none of us ever do. That is life…on or off the beautiful rainbow spectrum that is autism and PDA.
Self-Directed Learning & Neurodiversity 