Meltdown Monday Pt. 3

Today we are talking about demands….or perhaps that should be….

DEMANDS!!!!

They are constant and never ceasing. A deluge and barrage of them from the moment that we wake up…

Get out of bed. We’re running late. Put on your shoes. Feed the cat. Eat your porridge. What do you mean you don’t know where your coat is? How many times have I told you…

Any of that sound familiar?

Then there is school…

Sit there. Read this. It’s quiet time. Stop fidgeting. No, I don’t hear any buzzing. No, you may not go to the bathroom…AGAIN. 

Even on the playground with your peers the pressure does not stop. Though it may shift to a more subtle and unspoken demands to fit in. To act and behave like everyone else. To wear the correct clothes/shoes. To play the same game that everyone else likes even if you don’t.

Then it is back home to more demands…

Eat your broccoli. It is good for you. Why must I make something special just for you? Do your homework. No video games/television/computers. Get a bath. Brush your teeth. Go to bed. I don’t care if you aren’t tired. It is bed time. All the other children your age go to bed at this time. 

Are you tired and frustrated yet? Do you feel like you have no control over your very life? Someone else tells you when to wake up, what to eat, what to wear, when to go to bed…perhaps even when you can and cannot pee.

A level of demands and expectations that few adults except those in the military, prison or mental facility could or would endure. Yet our children are forced to conform to these standards ALL the time.

For the simple reason….

We are older and bigger.

That does not work in world politics….the work place….and it should not in a family either.

But there is a third type of demand that I had not considered until Jane Sherwin author of My Daughter is Not Naughty pointed it out…self-imposed ones.

I don’t know why I had not considered them before. After all I am the QUEEN of ‘perfectionism’ (which is why I have three finished books…or is it four…five…in my cloud…waiting from them to be ‘good enough’). I am the mom that PanKwake accuses of being…obsessed with cleaning. The partner that Cookie Monster must spank and tell to give myself a break.

So why could I not see that these self-imposed demands might be playing a role in all those times when I just could not figure out why PanKwake was anxious?

When Sherwin listed some of the demands that her daughter avoided…self-imposed ones…it was another light bulb moment on this journey. I mean who would believe that getting her own glass of water or turning on the television or bringing PanKwake her iPad was a ‘self-imposed demand.’

But look at it this way…if she got good at it…then it would move into that category of unspoken or spoken expectations. ‘Get your own water.’

Two that we struggle with and battle now are telling time and reading. She has built these two ‘demands’ up in her little mind to the point that it is easier to just avoid them…even if it causes meltdowns when she does not understand when her carer will arrive or I can’t be right by her side to read the Roblox chats fast enough for her.

Yes, we have carefully crafted a child-led environment and learning system that minimizes demands…spoken…unspoken…and as much as possible even self-imposed ones.

And it has paid off…big time. Meltdowns are rare now…especially big ones. My daughter is happy…and so are we. Even if it is a HUGE adjustment for the world’s most amazing man that I still have no idea what I did to deserve.

The thing is….experience has taught me….

If you take the pressure (those demands) off…she will eventually do it all herself…when she wants too….when she can tolerate it…when it is important to her. 

That is what happened with sequencing….now, next, then, first, second, third, etc. We had six weeks of focused speech and language therapy in the home. With no measurable improvement…and loads of avoidance. But the moment she got interested in a YouTuber named Aphmau, who crafts these intricate serials/soap operas using Minecraft, she mastered it almost overnight. ‘No, Mommy, that one comes after this one.’

It happened too with dressing herself. She steadfastly avoided it…until she became self-conscious of the changes occurring in her body as she approaches puberty (not that that is a good thing….but silver linings are important to hang onto, folks). Now she won’t allow any more help than laying out her wipes and clothes for her.

Of course, things are still on backwards and sometimes inside out. I simply point it out…not judgmentally, but more like… ‘Your shirt is on backwards. Is that comfortable for you?’ I have learned if it don’t bother her, then it should not bother me…and if someone thinks I am a ‘bad mother’ because of it… well, my pathological bullshit avoidance clouds up and rains all over them.

I admit that is a HUGE challenge. As a parent of a child with Pathological Demand Avoidance….you actually have to see it as a contagion. And welcome your own case of it with open arms. But when it comes down to all those spoken, unspoken and self-imposed ‘demands’ of being a good parent…the only one that matters is a happy, healthy child. And society can…

And then they can….

Because society…those people… simply cannot or WILL NOT make the effort to understand and empathize with the underlying stressors of not just demands but SENSORY OVERLOAD that cause our children to react that way…

But that is where we pick up next Meltdown Monday…

 

Meltdown Monday Pt. 2

Welcome to Volcanology 101, folks.

Today we pick up where we left off last week…talking about our little volcanoes. We learned last time that when the reservoir fills to a certain point with eruptable magma then there is nothing that can be done. That volcano is going to blow. The question was…in our kids what is this reservoir and what is ‘eruptable magma’?

The answer is two fold…

  1. Demands…spoken, unspoken and self-imposed
  2. Sensory Overload

Let’s begin with that first one and see just how far we get…

It should be obvious from the name…Pathological Demand Avoidance…that demands and specifically avoiding them is at the very root of this ‘whatever’. (I won’t say disease, syndrome or any of those words because they imply that something is ‘wrong’ with my child…when for me, it is a matter of DIFFERENT. Not wrong, not worse, not sick…just different.)

So what? I mean we all have demands placed upon us. And we cope. We learn to handle them. We suck it up and just get on with things. That is how life is.

That may be how some people feel and why this is seen as a ‘disease.’ But let me challenge you…

Do we? Do we really?

Alcoholism. Depression. Anxiety. Divorce. Post-Traumatic Stress Disorder. Anger. And even racism/isolationism/fanaticism. Aren’t they all signs and symptoms that a large majority of the rest of us are NOT managing the stress and demands of the world in which we live?

Perhaps our kids are merely expressing their displeasure at unrealistic societal expectations is a less socially acceptable manner than getting sh!t-faced drunk on Friday and Saturday night? Or popping prescription drugs to make them ‘happy’? Or hating everyone who is not exactly like them and blaming it on their god?

And while I am challenging your paradigms, your perceptions and belief-systems, here’s another one…

What do kids have to be stressed about? They don’t have a job or bills or any of the responsibilities of adulthood. This is the best time of their lives.

Really? Let’s look at that…

Don’t have a job? What do you call school then? They are expected to sit quietly at a desk for several hours each day. Produce busy work even if they already ‘get it’. Do exactly what ‘the teacher/boss’ says…when they say…without question…even if it does not make sense. They are expected to get along with everyone. And if that is not enough…they are then sent home to do more work. And they don’t even get paid for all that work.

How would you like to not get paid while be expected to take work home with you? And at the end, what can they expect from all this? More of the same in the form of a ‘job.’

Now let’s look at a couple of more of our expectations…

Sharing…we expect our children to share their toys…all of them…often with virtual strangers. I can’t count the times that I have seen parents in the park telling their child, “Go ahead. Let them see your ball. Sharing is a good thing.” But try going up to that parent and asking to borrow their mobile phone…or their tablet/laptop. See how quick things change then.

And tantrums? Not meltdowns here…even just normal every day ‘normal’ childish temper tantrums. Think about it for a moment. If your best friend calls crying or screaming about a partner or work, would you dare to tell her ‘shut up, I don’t want to hear your whining’? How about this one… ‘I’ll give you something to cry about?’ No, we show more care, understanding and compassion to our friends, co-workers and even strangers than we do the little people with whom we have been entrusted.

Yes, maybe once upon a time…in another time and place…or in other cultures even…childhood was this idyllic experience of learning, nurturing and growth within the safe watchful eye of the village.

But that is NOT the world that our children live it. They are assessed, evaluated, compared and measured against one another and our idealized view of what a ‘good boy/girl’ should be. And those pressures are immense on such little shoulders. None of our kids escape childhood unscathed. They all bear scars upon their psyches.

We all enter adulthood with burdens, fears and the makings of mental health issues of one form or another. Some of us become the bullies, hide behind our masks and pretend that everything is all right. And those are considered the successes. The rest of us…well…we fail.

No…from the moment we enter this world…and likely before…the words we hear most is…

NO! Don’t do that. You can’t be that. You’re no good at that.

Is it really any wonder that our PDA kids call us on our bullshit? And that is what they are doing. In my paradigm…my belief system…our children are the next step in human evolution…a gift…a blessing sent to clear away all those ridiculous ‘rules’ that are no longer serving our society. And my role as parent then becomes guide/mentor/advocate to sign post the ones that PanKwake truly does need to know. But that is getting off track for this one…

My point is for us to pause and think for a moment about those spoken…unspoken…and self-imposed demands…

Uh-oh though…I think that will have to wait for next week. But I do hope you will take a moment or two this week to ask yourself…

Do we (adults, society, this world) have it so right? Is my life with all its pressures, expectations and demands really what I want for my child? Or perhaps…could there be a better way? Maybe…just maybe…our kids get it more right than we want to admit? And maybe it is about bending…compromising…and creating a better world for us all?

(And yes…we will make it to sensory overload too…at some point.)

Meltdown Monday

At that conference I attended last week, one guy asked a question that I think plagues all parents…but especially those on the autistic spectrum (ASD)…and most especially those of us blessed with Pathological Demand Avoidance (PDA).

What can you do for them when they have a meltdown?

I will get around in a few Mondays to that, but first it is important to know/understand what a meltdown is…and more importantly what it is NOT.

A meltdown is NOT a temper tantrum.

A meltdown is NOT them testing your boundaries.

A meltdown is NOT them trying to manipulate you.

Then what the heck is it, you ask?

A meltdown is a panic attack.

Anxiety.

Sensory overload.

And that is the hardest thing for parents to get…to understand. Simply because of the intense pressure and anxiety creating stress that society places upon us to control these monsters, make our children behave.

I know. I understand. I live it.

But let me help you to put this into perspective…

Seven years ago I had a miscarriage that left me clinically depressed with anxiety and panic attacks. I was forty-five years old with a BS in Health Education, including a background in psychology. I had been through Cognitive Behavioral Therapy and learned all kinds of positive self-talk and coping strategies. I had managed multi-million dollar accounts, babysat drunk celebrities and planned parties in the country estate of Duke…

And yet one day I found myself wandering the streets of London with my heart pounding, my chest so tight that I could barely breathe, my palms cold and clammy, everything around me was painfully loud and bright…and my whole body was shaking with great sobs that I could not stop.

This educated, once highly successful woman with all these ‘coping strategies’ could NOT cope. That is anxiety. That is a panic attack. It does not matter who you are or were. Where you have been or who/what you know.

In that moment you are helpless and out-of-control. Even…especially…your own control.

So a couple of years later when I read in Understanding Pathological Demand Avoidance by Phil Christie et al that meltdowns in my daughter were not temper tantrums (I knew that much already…but not what they were) but rather PANIC ATTACKS, I cried. I sat on our couch and cried my eyes out in guilt for all the things I had tried/done to stop her.

It was one of those light bulb moments in life when I realized…

If I as an educated forty-five year old woman could not control myself during a panic attack, how the H-E-double hockey sticks could I expect a six year old (at that time) little girl to?

I never again saw or managed a meltdown the same way. It was an instant transformation to empathy and understanding.

Let me give you another analogy…

volcano1

One of my freaky fetishes is…volcanology.  Amateur anyway. One of my fav movies is the BBC docudrama Super Volcano about the eruption of Yellowstone. And if there is a documentary on the subject…I’m there. One of the first things that I learned was that beneath every volcano is a reservoir.

reserviorA couple of things to understand about reservoirs:

  1. Each volcanoes is different. Size. Shape. And even the content of the magma is different mixes of rock and gases.
  2. …but this is the important one, folks…WHEN THAT RESERVOIR FILLS WITH MOLTEN/ERUPTIBLE MAGMA, THAT VOLCANO IS GOING TO BLOW!!! There is nothing that the volcanologists can do except get any people around to safety and sit back and enjoy the fireworks. And learn…each and every volcanic eruption teaches them more about the nature of eruptions…and gets them one step closer to understanding and preparing for the next one.

What is that reservoir though? Hmmm….that sounds like a good place to stop for today. And to pick up next Monday…

Team PanKwake…

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…

TEAM PANKWAKE!

And as she says…Autism: Deal Wif It! PDA does not stand a chance against us.

PD-What?

I am exhausted. Shattered is the shockingly accurate British term for it. I spent the day at parents’ conference put on by the National Autistic Society here in Swansea. It was brilliant! But between an introverted empath in a room packed full of frightened, hurting and desperate parents and the information overload of almost four hours of lectures and discussion, well, it is no wonder.

Most of today was a review of things that I already knew or resources/strategies that I had been using for years. But I did come away with some new ones and was highly encouraged by the new books out on the subject and the more active PDA Society, but I am getting ahead of myself here.

The one thing that was a light bulb moment for me was the realization that I had just internalized all this and now did it so automatically that I had never actually taken the time to share/educate my new partner or PanKwake’s carer. The moment I got home I apologized to both and am taking steps to correct that oversight.

I was reminded too of a ‘finished’ book that has sat in my documents folder for four or maybe it is five years now. It was to be the second book on this subject…but another brilliant Mom out there beat me to it (good on her). And there are a couple of others out there too.

So the question I am left asking myself is…what now? My personal social experiment that is my daughter is going surprisingly well. Certainly better than expected or the ‘average’. So is it too late? Is it worth it to edit and update it? Re-write woulds perhaps be more accurate. It is not like there are dozens of books out there on the subject even now.

I thought over the next few days/week…I would serialize it as it was written then, perhaps adding a bit of explanation like this or a footnote on progress at the bottom. Get feedback from other parents and see if there is still a need for my voice on this one. So here goes…for what it is worth…


PDwhat?: What PDA is and is not

I hate the term Pathological Demand Avoidance. It holds horrid connotations and does not effectively communicate key characteristics of the condition. To me, it seems to feed into the perceptions of our children as willful little monsters, who are simply trying to manipulate people to get their way. Nothing could be further from the truth. Our children are the victims of the millions of spoken and unspoken demands that are placed on us all each and every day.

In its simplest terms, PDA is an anxiety/panic disorder. In an attempt to control that anxiety and panic, our children and young people exhibit an intense need to control their environment and the people in it. When their sense of control is brought into question, usually by those spoken and unspoken demands that we experience every day at home, school or in society, they can react by trying to manipulate people to avoid them and if that does not work with extreme outbursts/panic attacks/’meltdowns.’ If there were a lot of ‘controls’ in that paragraph, it is for a good reason…that is what this is all about.

Demands bombard us all constantly: put on your shoes, pick up your coat, be quiet, sit still, do your writing, and too many others to even count. For most of us, we learn early the almost unwritten code of being a good girl or a good boy and we accept the rules that society imposes upon us all. But for our children, while they may be aware of the rules and may even remind others of them, rules simply do not apply to them.

It is for me one of the most endearing things about my daughter, that she calls into question all of the stupid and no longer useful should-haves that this world clings to against all reason. It does though irritate that world and sets her and us up for almost constant conflict. Even a short bus ride can result in dozens of broken rules, such as don’t talk to strange, use your indoor voice, don’t ring the bell more than once, etc. People look at us, to which she is blissfully unaware, sometimes rude ones even make nasty comments. At moments like that, it seems to me that my child is the sane one, that the world and those adults, who should know better, have another disease, Pathological Bullshit Demands.

What makes the situation so hard is that almost no one has ever heard of the term Pathological Demand Avoidance…and if we use that term all those nasty images of the ‘naughty’ child would likely only be confirmed in their minds. Truth is that on this one, our kids have it right…society is a nasty, demanding task master with little tolerance for anyone or anything that does not fit its mold. They are labeled naughty, trouble-maker and worse. We are bad parents, lack control and ‘what’s wrong with society today.’

To make matters worse, when we do seek guidance, a different perspective and information to help us help our children, we find very little. There is one website, with a few articles written years ago from a predominantly clinical and educational perspective. There is an online forum, which can be a huge goddess-send on those hard days, but so much of it is from that ‘bad day’ perspective that it can be overwhelming at times. What disturbed me most as I began to research this condition was that I discovered there was only one book written on the condition.

Thirty years since PDA was first recognized and there is only one, ONE, 1 book on it. And that book is written by the clinicians, who first developed the theory, from a very clinical viewpoint. While it has one chapter dedicated to families struggling with this diagnosis and its effects on their family, the book is more appropriate for teachers, social workers and other clinicians. This book is intended to translate that information into everyday language for the families living in the aftermath of that diagnosis and to offer practical real world strategies for living happily ever after with your special child.

The first step down that road is to understand what PDA is and is not.

Pathological Demand Avoidance (PDA) is a developmental condition first noticed in the 1980s by Elizabeth Newson in her work with children at the University of Nottingham. Many of these children had been referred to her team for evaluation, often for Asperger’s, but she noted key differences within this group. Primary among those differences were the ability to maintain eye contact and engage in imaginative play.

Over the next thirty years, she and her team worked with individuals, families, educators and others to define what she called Pathological Demand Avoidance; develop strategies that enable these children and young people to function to the maximum of their abilities; and lobbied for more research, services and support for those with the condition and their families.

At this time, PDA is not recognized as a distinct condition in the DSM-V (Diagnostic and Statistical Manual of the American Psychiatric Association), the bible by which most doctors, psychologists and clinicians diagnose mental health and developmental disorders. PDA is currently only recognized as a distinct diagnosable condition in the United Kingdom, where it was first noted…and even here there is disagreement within the scientific and clinical worlds about the validity of it as a distinct condition. In England, it has been placed on the Autistic Spectrum, even though strategies that work well with autistic children fail to meet the needs of this distinct group.

Given recent changes to the DSM, it is uncertain what the fate of this term or others such as Asperger’s will be. Nonetheless, when many parents discover this term, they have a light bulb moment, where for the first time they feel that someone understands their child, all the boxes are ticked for once. In many instances, where families have sought diagnosis, they were told that their child has atypical autism or even Oppositional Deviant Disorder (ODD). But often the families feel that those are not quite right as well. With PDA, they often find that perfect fit for the first time. The term PDA is useful from that stand point alone.

What then are those distinct characteristics that Newson and her colleagues first noticed? How do they differ from Asperger’s, ODD and other disorders? And most importantly, what are their impacts on your child and you?

Over the years, Newson and her team noticed several key differences between these children and their peers, even others with special needs. Those characteristics include:

  • Passive early history in the first year.
  • Continues to resist and avoid ordinary demands of life…strategies of avoidance are essentially socially manipulative.
  • Surface sociability, but apparent lack of sense of social identity, pride or shame.
  • Lability of mood, impulsive, led by need to control.
  • Comfortable in role play and pretending.
  • Language delay, seems the result of passivity: good degree of catch-up.
  • Obsessive behavior.
  • Neurological involvement.[1]

Let us begin by examining each of those characteristics in more detail.

Passive Early History

This is one of the characteristics that has a great deal more variability in terms of diagnosis. Newson noted that while many of these children showed early signs in the first year of their life, not all did. For those that did, it was usually in the form of passivity, a lack of interest in the world around them. They were the ‘good babies’ that everyone prays for. They would sleep for extended periods of time, lay or sit quietly for hours and did not interact with the world around them.

But as she noted, not all children with this condition do. My daughter certainly did not. After a brief couple of months of this pattern as a newborn, she began to quickly assert her need to control her environment and me. Without a vocabulary to adequately describe what was bothering her, she had only the shrillest and loudest cry known to man to communicate her discomfort and even as an experienced mother it was not always easy for me to understand.

So do not be misled by this one, if your child did exhibit this trait, count yourself lucky for the calm before the storm. But if he or she did not, don’t think that let’s you off the hook. It is still quite possible that you have been blessed with one of these unique creatures, a child with PDA.

Resists and Avoid Ordinary Demands of Life

If early passivity was a malleable trait, this one is NOT. Avoidance is the key defining feature of this condition as its name implies. What can be confusing is the way in which many of our children do it. They can become so skillful at this that we may not even realize they are doing it. ‘One more minute’, ‘as soon as I’m done with this’, ‘my legs/hands/head hurts,’ and other seemingly reasonable excuses for why she cannot meet your demand. Of course, if these do not work, she may get delightfully imaginative by pulling her arms inside her coat and telling you ‘I can’t do my writing right now, the monsters ate my arms.’ If all else fails, she may escalate to a meltdown by which point the original demand becomes secondary. Anything and everything to avoid even the simplest and most ordinary of demands.

Surface Sociability

This is what can be most confusing for not only the public, but many clinicians and educators. These children appear to be outgoing, kind, friendly, even extroverted unlike most others on the autistic spectrum. My daughter is a prime example of this. The moment that we get on a bus or leave the house for that matter, she is certain to start a conversation with someone.  Her favorite is other mothers, who pull their buggies into the pram bay alongside of us (for my fellow Americans…’dem is fancy words for a stroller). She will immediately begin asking questions, some quite personal. She will tell you everything about her and her condition. But it is clearly she who is in control of the conversation and any attempt to change the subject will be met with counter measures to get it back to the topic she wants/needs to discuss.

She is also extremely loving and affectionate, almost inappropriately at times. She will hug me and kiss me and others close to her. But she will also touch, rub against and try to hug virtual strangers. At the pool, she would go up to dads playing with their children and insert herself to the point of ‘jumping’ on these poor men. It is though all on her terms. She is my cat child. By that I mean like most cats, she wants stroked when she wants stroked, and any attempt by you to give them outside of that will result in her running away. If not instigated by her, affection becomes another demand to be avoided.

Another key difference of these children’s sociability is a total lack of understanding of social hierarchy. Adult/child, old/young, queen/pauper. They simply do not recognize the difference or care. For me, it is one thing I adore about Emily. Why is the queen any more special than the homeless man on the street just because of who she was born to? But the flip side of that coin is that Emily does not understand or accept societal strictures of childhood. She has even gone so far as to offer childrearing advice to other mothers on the playground.

Similarly, pride and shame hold little meaning to our kids. Most children take careful note of how others react to their behaviors and respond accordingly. It is a useful parenting tool as most will quiet quickly if you point out that people are looking at you. Such shaming is completely useless with our kids. They simply do not care how people view them…or you. It is one of the reasons that public meltdowns can be extremely draining for the parent of a child with PDA.

Impulsive, Rapid Mood Changes

Parents often say…my child can go from zero to sixty (a hundred, a thousand, a million) in two seconds flat. As mentioned earlier, when all other attempts at avoidance have failed, these children will most often experience a total and complete emotional meltdown. These episodes are perhaps the hardest part of parenting our special children. They are exhausting for us…our children…and just about everyone around us.

I have an obsession (we’ll talk more about those in a minute) with volcanoes. If I had the money and the time, I would go so far as to go back to school to become a volcanologist. I watch every television show I can find on them. One thing that I learned from watching these shows is the mechanism of a volcanic eruption. Magma or melt builds up in reservoirs or pools deep beneath the surface of the volcano until it reaches a certain point. At that point the only way to relieve the pressure is an eruption. It becomes inevitable.

Our children are little volcanoes. They endure and endure and endure…and endure the demands of life until suddenly it all becomes too much for their little minds. And they explode. Violently. Sometimes without warning. And everything and everyone around them takes the full force of the explosion. It is important to remember though that they bear the burnt of their explosions. It is exhausting for them as well as us.

But it is equally as important to remember that those explosions are a natural force. Scientists studying the eco-systems in and around Mount Saint Helens after its explosion discovered that life returned amazingly quickly and in some new and delightful ways. Naturally occurring vegetation that had been replaced with ones introduced by man soon resumed their station at the top of food chain. All was right and beautiful with the world…until the next that magma reaches that point and it all blows…AGAIN.

Yet even between these volcanic explosions, we often notice an impulsivity that is sometimes misdiagnosed at ADD or ADHD (Attention Deficit and Attention Deficit Hyperactivity Disorders). Our kids can lack focus, bouncing from one activity to the next without thought for even safety. The man is walking his dog and our children simply has to pet it. It does not matter that that dog weighs twice as much as they do or that it has muzzle around its snout. Those warning signs that the rest of us would clearly read and take into consideration before acting upon our impulse simply do not register against the overriding need to pet that dog…NOW.

Active Imaginations

Along with their surface sociability this is the other characteristics that is markedly different than other children on the autistic spectrum. In fact, not only are they capable of role play and pretending, they may actually prefer it and use it effectively as another means of avoiding demands. Monsters eating their arms so that they cannot do their writing is just one example.

I remember a phase that Emily went through where she would hide for a moment under a blanket. I would find her and she would throw off that blanket almost like a new baby emerging from its mother’s womb. She would then introduce herself…I’m Emily Six (or five, seven, whatever, we went through several of them during this period). She would tell me that my Emily was dead and she had come to take her place because her mother hurt her, did not feed her or something similar. Until she decided to go back under that blanket, she would not respond to simply Emily, she insisted on being called Emily Six. And she even took on decidedly different characteristics, almost like a split personality disorder. I miss Emily Six sometimes, her behaviors were decidedly easier to manage actually.

This is an extreme example, but even in their day-to-day activities our children are likely to be more creative than their peers, especially others on the spectrum. They prefer music, art, cooking and other crafty outlets to traditional subjects such as science, math or even reading. It makes sense, why read about boy wizards when you can be one, I suppose. This imagination and creativity can be their greatest strength and one that we can build upon as a bridge to the ‘real’ world, but more about that later.

Language Delay

This was one of our first clues that something was wrong with Emily. At two and a half, she was not yet talking. We sought help from our health visitor/nurse only to be dismissed out of hand. She pointed out that as the youngest child Emily did not need to speak. We and her siblings were quick to meet her needs without them being vocalized. But over the years, it remains one of the most obvious symptoms of her developmental delays. It has caused untold stress due to bullying on the playground.

Please do not be confused, our children can and may have an age appropriate vocabulary or even sound like little adults. But their pronunciation may be slurred and even not intelligible, often resulting in increased stress levels.

Another thing to consider is that studies are beginning to show that our children may require additional time to process language. This is important in terms of giving instructions. Our kids may need a couple of more moments to take in and analyze your request before they comply.

One point that Newson and her team made was that they felt language delays were the result of passivity and that the children tended to catch up. From personal experience, I disagree. Almost five years since we first noticed Emily’s delays and the gap between her speech abilities and her peers continues to widen.

Obsessive Behavior

This is one characteristic that our children share with others on the autistic spectrum.  Whether it is the need to touch every light post, avoid every crack in the side walk or collect half a dozen different things, you and they may find yourselves controlled by these obsessions.

What’s more, these inanimate objects may take on mythical proportions, may mean more that human contact even. Our apartment/flat is well on the way to becoming a hoarders delight. We have a dozen or more collections: Pez dispensers, Bin Weevils, Trashies, Barbies, stuffed animals and even a five gallon bucket of shells, conches and leaves. None of it can be disposed of…without risking an extremely violent meltdown.

One thing to note is that these obsessions can extend to people. Friendships, which are decidedly one-sided and superficial anyway, are collections. Our children can fixate upon a favorite teacher, a kind neighbor and most especially the empathetic child, who is destined to become their friend.

Neurological Involvement

Fancy words, simple meaning. In addition to PDA, your child’s brain is likely to have other irregularities. At times, it may seem more like an alphabet soup: ADD, ADHD, SPD, ASD. The thing to keep in mind is that a brain that has one problem is also likely to have difficulties in other ways as well. Emily again follows this pattern. In fact, her diagnoses include ADHD, SPD and even epilepsy. They are all entwined as well. When she is having more difficulties with the stress and meltdowns of her PDA, she is also likely to have more seizures.

SPD remember that term. If you have not heard of it already, you are almost certain to hear it again. SPD stands for Sensory Processing Disorder and it is almost always a co-morbidity with anything on the autistic spectrum. In fact, many of stressors of everyday life can be attributed to this condition. In essence, SPD relates to how the brain receives and processes the input from our senses: sight, sounds, smells, tastes and touch, but also movement and pressure on the joints. Our children may be more or less sensitive to these inputs. They may crave constant motion, avoid certain (or even most) foods, smell things that you and others do not even notice, cover their ears around loud sounds and turn their heads away from bright lights. Or the reverse. Or any combination of sensory seeking or avoiding behaviors.

***

So what do you think? Do any (or all) of those sound familiar to you? Did you like me say Yes! when you saw a list of behaviors that almost exactly matches your child? If so, you are not alone. And that is something to remember as well…you are not alone. You may well have felt like it, but I hope by the end of this book you will not anymore. But you may still feel a bit lost, uncertain, wondering now what. So what? A label does not offer the answers. The rest of this book attempts to offer some options from the perspective of a parent, a real life expert, someone living in the trenches of this condition each and every single day. I hope you have found enough to intrigue you so far and that you will join me on the rest of this exciting journey.

[1] Christie, Phil; Duncan, Margaret; Fidler, Ruth; Healy, Zara (2011-11-29). Understanding Pathological Demand Avoidance Syndrome in Children (Jkp Essentials) (p. 13). Jessica Kingsley. Kindle Edition.

 

What X-Men teaches us about autism/Asperger’s…

On Monday, I used this scene from X-Men: First Class when I talked about it being society and not our kids that are disabled. But this one is so important that I thought it deserved its own blog.

I think that Magneto/Eric makes a very valid point…especially for our Aspie kids. They spend so much energy, effort and time trying to ‘look normal’ that they cannot truly concentrate on anything else. I know this was especially true of PanKwake during her one year in ‘school.’ She spent the whole day trying to mimic the behaviors of the other kids that it exhausted.

To make matters worse…the one time during that long day (especially for an Aspie four year old) that she dropped the mask, she was penalized. You see this school had the absolute worst reward system on the face of the earth…only your last action counted. That’s right…one screw up and you are a failure was the message they taught our kids. They had a board with circles on it…gold, silver, green, yellow and red. Every child had a name card and the teacher would tell them to move it from one circle to another.

Because PanKwake had spent the whole day trying to ‘look normal’ by the end of the day she was exhausted. Of course, to make matters worse the end of the day was when everyone cleaned up…one of her least favorite things to do. So every day, she ended up on red or yellow so she did not get a reward. And those bullies who had terrorized her on the playground got a prize…because they picked up a couple of toys. WTF? So I was left with an exhausted and cranky child to get home. A near impossible task without a meltdown.

The thing is that is how society as a whole treats its people…’normal’ or special needs. They judge you on one single moment…and not all the good that came before. They cannot accept anything that does not exactly fit its mold of perfection. So when your ‘blue’ comes out like Raven’s/Mystique’s…even for a second…you are rejected. All you did before does not count. And to make it worse…neither does all the good you do after. That single ‘blue’ moment defines you…sometimes forever.

We need to move away from that…we need to face head on the damage that society is doing…not just to our Aspie kids but to all of us. We need as they do to reject old rules and norms that divide us…and begin to make the new norm…ACCEPTANCE.

And I am afraid that while Charles Xavier’s ideals may appeal to my optimist, my realist side stands firmly in Eric’s camp…peace was never an option. Society is too entrenched in the old ways to willing embrace anything that is different. The only way forward is MELTDOWN…like our children to stand by their sides and militantly shout, kick and scream our right to be different. As a seamstress, I know that when a garment is sewn wrong the only way to fix it is to first rip it apart.

And that is why…ADVOCACY is the only way forward. In your face, kiss my *grits*, I have the right to be here, to use this facility, to do this thing. Of course, we can first try Dr. X’s nice way…sometimes individuals themselves will accept our ‘blue-ness’ but society as a whole…will not…unless we make them. We have to demand our rights…just to exist. But then too that is our ultimate gift and purpose…to drag society kicking and screaming into the new age.

So I stand with Magneto…and Mystique…Mutant and PROUD!

The Next Jump In Human Evolution…

When it comes to Asperger’s or high-functioning autism as the ‘experts’ call it these days, I have a bit of a quirky take on it. From the beginning, I have taught PanKwake that she is a Superhero. I compare her to Jean Gray of X-Men fame. I tell her that we simply need to train her brain to use its super powers. But to be fair, I am more of a Magneto than I am a Dr. Xavier. I do believe that Aspies are ‘the next jump in human evolution’ as Magneto says in the first X-men movie after Charles Xavier corners him following a congressional meeting on the Mutant Registration Act.

The problem for our Aspie kids is the same as it is for mutants…

Magneto 1

So instead of embracing all the wonderful talents, gifts and special abilities that our kids bring to it, society tries to force our square pegs into their round holes. Therapies and interventions whose only goals are to make them act ‘normal.’ Like that is a good thing? Schools whose ideas of ‘mainstreaming’ is to set them up for being bullying by failing to educate those ‘normal’ kids about special needs.

In the end…like Magneto’s motley crew of mutants…too many end up withdrawn, isolated and so damaged that those ‘experts’ actually believe that social anxiety disorders are a part of Asperger’s/autism. The truth is that when supported and given a 100% bully free environment, our Aspie kids can integrate and assimilate. How do I know? Because PanKwake does it all the time when given the simple accommodations that she needs to address her sensory issues and fixations.

This whole idea that it is our children who have social issues is BULL SHIT. The truth is that society itself is so frightened of anyone who is different that it is the one broken…not our kids. Our kids are strong and beautiful. They see people and society for what it is. They simply refuse to accept those dumb ass rules that are only because…that’s the way it had always been done.

And that is why society needs them…more than they need it. Because society is broken. It is still trying to follow rules that are a century out of date. That simply no longer apply in the digital, free-thinking world in which we live now. They offer the hope that it needs to keep itself from self-destructing with hatred, greed and hubris. They offer a new understanding.

Only one thing…for them to move into that role…which I believe is why there are so many of them and more being born every day (forget this one in 84 or whatever…I spend enough time on playgrounds…honestly the number is 1 in 4 or so)…is that their parents need to stop stifling them…stop trying to make them fit in the round hole…and help them celebrate being beautifully square.

Here is a bit more of my Magneto wisdom for you, folks…