Yesterday, I talked about the Paradigm Shift that has made all the difference with PanKwake…
Recognizing that this is little person is your EQUAL.
Shocking I know. But yes, you are still the parent. And that means that while you will most definitely need different tactics than those espoused by society as ‘good parenting’, nonetheless you still have a responsibility to this person…and yes as much as it pains me to say…society too.
One way that has helped me to come to terms with this new view of parenting is to think of that Mister Spock (or in PanKwake’s case Miss). Your Pathological Demand Avoidant child is your own personal little alien come to earth.
See with an alien visitor you would automatically take a different point of view. They would not be some ‘child’ you were meant to force into some preconceived mould of ‘perfection.’ No, you would see yourself as their GUIDE…a mentor. Someone whose sole role was to help them to understand our world and fit-in…when appropriate. You would likely also see yourself as honored to hold this place of trust with our visitor.
Back to that Paradigm Shift we talked about.
But how then might you ‘parent’ or guide your gifted little ‘alien’?
As I said before, I really do think that the PDA Society and Dr. Ross Greene’s Lives in the Balance collaborative problem solving approach are right on…as far as they go.
What I want to do today…before we explore why home ed really is the ONLY way to go with your PDA child…is pull out a few of those strategies and see how my methods augment and amplify their impacts.
Choose your battles.
Many people who know us may think that PanKwake has no rules…heck, she will tell you she does not. But she does in fact have boundaries…just very high ones. Instead of a tightly controlled and strictly fenced in playground of life, PanKwake has a relatively open field in which to explore with natural boundaries such as trees and streams…but limits nonetheless.
So how you handle and express those ‘limits’ are as important as the boundaries themselves. Keys that have helped us to make it work include:
- Terminology – The ‘experts’ never got it. They thought it was too complex for her to understand, but the one thing she always respects and that makes her stop and at least pause are the words…Health and Safety.
- Explanation – As those extremely logical creatures, our little aliens will never except the exceedingly arrogant and silly parenting excuse of…because I said so. They require reasons…sound and logical ones.
- Bring in backup – Surprisingly, our kids will often respond very well to authority figures. I can tell PanKwake a dozen times not to run at the pool. I can explain why…that she might slip and fall. She can even have the ‘natural consequences’ of chipped teeth. But none of that is as effective as a blown whistle and shake of the head from a lifeguard. I think it all goes back to Dr Greene’s theory that all children WANT to do well.
- Allow…nay, ENCOURAGE them to question ALL rules, ALL authority– Yes, even seemingly clear cut ones like killing. Even your own authority. Have long and open discussions about ‘rules’ and when it is important to follow them…and which ones are just plain silly. Guide that little alien to the place that is THEIR comfort zone between obedience and their natural anxiety.
When you have done all those things, then it is up to you to PICK YOUR BATTLES.
But when you do, MAKE DAMNED SURE YOU WIN THEM!
Of course, you are going to fail. Goddess knows that I have and probably will again. It takes the wisdom of Solomon to get this one right. Sometimes I think we learn more from failure than we do from success so let me tell you about one of my recent failures…
We had an appointment with the pediatrician (paediatrician in the UK). From my perspective, those were precious and hard to come by. We had fought hard for this one…and while the original purpose of that appointment was no longer an issue…her epilepsy means that we need some kind of a safety net in case she does start having more seizures during puberty.
But going in I knew that NOTHING is more stressful and anxiety causing than appointments. This is a child that has been poked and prodded since she was two and a half. She spent the majority of her little life on strong mind-altering drugs…some times to the point of requiring physical force to make her take them. She has had blood drawn and electrodes glued to her head too many times to count. When we renewed her DLA (Disability Living Allowance) I created a timeline of her medical care and a list of all the ‘experts’ she has seen. When Cookie Monster saw them, his reaction was ‘No wonder she hates doctors.’
So what was a mother to do? She HAD to see the doctor, right?
Oh and to make the decision even more complicated, there is the issue of home ed. One of the worst myths about home ed is abuse. A few high profile cases where the children were supposedly home educated but in fact simply not being educated or cared for at all have made things challenging for the rest of us. So that means that if you home educate one of the last things you want is to give the impression that you are refusing treatment or hiding your child.
So I did all that I could think of. I told her that there was this new and really brilliant doctor that might at last be able to help us solve the problems that were important to her. But the one thing I knew better than to do was put him on her visual schedule…which would only increase anxiety and prolong it. But that morning I told her we had a chance to see him…
And all H-E-double hockey sticks broke out in our house.
After over half an hour of bargaining and threats…both ways…Cookie looked at me and shook his head. I knew the game was up. I had set a boundary that was unrealistic…I had set my child up to lose, not win. And so I did what even the US Marines have learned they must at times…
I made a tactical retreat!
And you know what…it all worked out for the best in the end. I called and cancelled her appointment at the last minute. I explained about the autism and PDA, something that local doctors do not even recognize. The administrator called back later that day offering a telephone consultation…something that I had thought impossible for an initial consult but that had become common with our doctors in London.
And when we did have that consult, I was reassured that this doctor truly was as ‘brilliant’ as I had claimed him to be. One thing I did request was to be put on the rolls of the epilepsy nurse. I received an appointment letter for her later that month…but this time I had learned my lesson. Rather than once again go through the trauma of trying to get PanKwake to this woman’s office, I called her and explained the situation.She came to our home. She was there for an hour. And she left truly understanding the complexity that is PanKwake.
I have not heard back from them…this move is taking up so much time that I have not proactively followed up as I should. But for now at least…all of us, the doctors, nurses, us and PanKwake, are content.
The lesson being…even when you THINK you are right…even when you draw that line in the sand…some times you must be the one to step back…to concede defeat…
In order to retain your relationship and the trust that makes it all work…
And to live to fight another day.
Hmmm…trust and relationship….I think there may be something I need to talk more about there too…but tomorrow…
Self-Directed Learning & Neurodiversity 