I mentioned the other day that I went to a conference for parents on Pathological Demand Avoidance (PDA). Most of it was a review of resources that I had discovered and adopted almost five years ago…before her autism diagnosis even. One thing about it though was that it was a validation and good reminder of how far those strategies have taken us.
A bit of background first though…from the time she was a baby as the mother of six I knew something was different about this one. But we muddled through with words like…colic…difficult baby…cranky…terrible twos…and she’ll catch up. Then when she was two and a half she had her first seizure. It took us a year to get the doctors to believe us that this was epilepsy and not just the random febrile fit.
But even then…there was no help to be had. Our paediatrician told me…’You don’t know what it is to have a special needs child.’ (Excuse me I raised one already!) We were left to languish under that woman’s care for over three years while PanKwake had seizures in her sleep, began to show the behavioural challenges associated with autism/PDA and fell further and further behind her peers developmentally.
In desperation, I sneaked into an epilepsy conference on behaviours in children with the disease. I say sneaked because it was a conference for professionals…nurses, doctors and Special Educational Needs Coordinators (SENCo). I was the lone parent in the room…and only my bachelor’s degree in health education allowed me to digest the jargon. It was the first time that I heard the term…Pathological Demand Avoidance.
While I put mental tick marks on every single characteristic they listed, my stomach dropped at the thought that my child might have this ‘disease.’ What they were saying about the prognosis/outcomes of the few children they had followed into adulthood was more depressing than you can imagine. None have qualifications. Almost none had jobs. And more than a couple had gotten into trouble with the authorities.
But there was just too many ticks for this to be dismissed as coincidence. So I bought the only book that existed at the time on Amazon…and devoured it in two days. That was quite a feat considering it like that conference was written by professionals for professionals with only a single chapter directed at parents.
By the time I finished that book, I was in tears and spiralling towards depression. There was NO DOUBT in my mind. PanKwake had PDA. And that ‘bleeping’ scared me to death.
But anyone who knows me knows…I am a fighter. Even when the odds are against me…heck, when they say it is impossible…I will find a way. Especially when they are impossible…I make ways where there are none.
To put that situation into perspective…I was forty-five, living in a foreign country whose educational and medical system I did not understand, my marriage had fallen apart, I had lost several jobs and had a miscarriage that left me depressed…clinically depressed. Now I believe that my child has this ‘new’ form of high-functioning autism with basically no future.
I closed that book with tears and I can describe everything about that moment as I said, “Not my child. That is not going to be my child. I don’t care if it kills me. I don’t care what I have to do. I don’t care who I have to fight. Even if I have to do it all by myself. PanKwake will have a future.”
And thus began our journey of the autistic spectrum. I did all the things I was supposed to…like battling for two years for a diagnosis and trying to work with social services to get her/us help. And I did more than a few things that I was not supposed to as well like home educating her and trying this ‘radical’ collaborative problem solving technique by Ross Greene.
So fast forward to sitting in that room on Wednesday…and I have no regrets. The whole things was confirmation that we are on the right track to give PanKwake the best possible future. And despite how hard this is…I was the smiling one…the positive one.
Then there was yesterday!
It was the roller coaster of Pathological Demand…rolled into a single day.
The night had not been bad. She only got me up three or four times. She was excited to have Mickey Mouse pancakes for breakfast (PanKwake, her online nom de plume…is a take off of pancake, one of her three dozen or so approved foods) at the table with us.
Then all h-e-double hockey sticks broke out. We had run out of whipped cream. She has to have whipped cream on her pancakes. It was the worst meltdown in a couple of months. She is typical for PDA in this too…so all the knives in this house are hidden. But I discovered that forks hurt too. It took half an hour to forty-five minutes with the carpet men working upstairs for her to calm down.
One thing that I have discovered that is not in any of their books is how important it is after a meltdown to let them know that you still love them. They may have no control over themselves in that moment but they can frighten themselves as much as they do you. So it is only natural for them to wonder…do they still love me?
Now with PanKwake she is NOT a touchy feely type person. So hugs are more rare than rainbows and something that gives you, not the other way around. But after a meltdown and a few minutes of alone time to calm herself…PanKwake desires your time and attention. So off we all went on a walk and to the park.
We manged to get caught out in rain and hail, making it home just in time for her carer. She loves her Mog time and yesterday was no different. They threw a party in Meep City on Roblox and had 30+ in her house. Mog was even helping her with the reading…the only time she will tolerate being read to now is computer stuff. It is a ‘demand’ that she just cannot manage.
But as I cleaned the house…and cried a bit, I realized the most amazing thing. I am no longer doing this alone.
You see I had all those pieces of the puzzle for all those years…and we were still in ‘survival mode.’ The creepers and mobs of PDA would come and attack us. The we would respawn and fight them all again. And we were doing OK…we were surviving.
But the happy that I/we have now is because we are no longer waging this war alone.
Of course, Cookie Monster is the biggest factor. And every moment of every day I am grateful to Fate and the goddess for bringing this one of kind man into our lives. This is one of the songs that always reminds me of Cookie…
I still am not sure what that ‘something good’ is or was…and that is a bit scary because I worry that I will stop doing it and he will stop loving us. But I do my best every moment to make sure he knows how much he means to us.
He has made the total difference.
Just his calming and non-judgemental presence. I mean PanKwake wakes him up most mornings…with a water gun. And he just fires his right back. And during that meltdown? He calmly helped to disarm her. But what still AWES me is that he gets it…he just instinctively understood that she needed our presence to reassure her…to know that we still loved her. And after all that, he was up for a walk and the park…for her.
And the amazing Mog too. She is so much more than an employee…a carer. She too is a partner in this fight to give PanKwake a fighting chance against PDA.
There are others too…friends and homeschool groups.
Bottom line…it is not just me against the world to give PanKwake that brighter future. Now there is…
And as she says…Autism: Deal Wif It! PDA does not stand a chance against us.