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.

 

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Big ******* Deal…

I awoke this morning and like most days after checking on her it is was off to check emails. The very first one I notice is from one of my special needs home education groups…and it reads…A VERY Sad Day for Our Children. I opened it prepared to offer what support I could in whatever crisis this family faced….only to discover it was the ….. election results. This angers me on so many levels. Yes, our special guys and gals need all the help they can get. But what people seem to forget it is the VERY high price and low returns on that assistance.

If you missed it, read about our almost year long struggles with the ‘system’ here. In the end, we were bullied, lied to and had these people pressuring us to put PanKwake back into the very schools that had failed to protect her from bullies, failed to diagnose her autism, and treated us, her parents, like idiots and the enemy. We gave up…all we wanted was to be left alone.

As a result of all that time I had wasted I re-examined my life…

That little bit of extra money could never give us what we NEED, only what THEY want us to have.

The strings that come attached with it in terms of reporting and a revolving door of strangers in the life of a child with autism who experiences anxiety around new people anyway…was too high a price.

We are already stuck living in a city and a borough that is NOT what we want or need…but because of the system THEY will not help us…even though we could live somewhere else for half what they are paying here.

I have already been told by the HMRC that my chosen career path as a writer is not viable…that sent me into another of those tale spins.

I never knew that Wonder Woman was the single mother of an autistic child too.
I never knew that Wonder Woman was the single mother of an autistic child too.

The truth that no one wants to see is…if you want to save your child…yourself…it is up to YOU. I was reminded of this photo that I copied the other day from Facebook.

We know what our kids’ need…not the government…not the schools.

We know what works for them…not teachers or psychologists or social workers.

We are the only ones that can see past the labels to the bright and beautiful gifts they really are…to everyone else they are just numbers…1 in 88, £8250 for personal budget, £20K for special school place.

We know what’s best…

And we need to quit looking to others to save us. We need to save ourselves…and our kids.

And that does not change if it is Conservatives, Labour, even UKIP…for my Americans…Republican, Democrat or Libertarians. In the words of Ralph Waldo Emerson…

A political victory, a rise of rents, the recovery of your sick, or the return of your absent friend, or some other favorable event, raises your spirits, and you think good days are preparing for you. Do not believe it. Nothing can bring you peace but yourself. Nothing can bring you peace but the triumph of principles.

Is today a sad day for our children? Yes, because we are wasting time moaning about an election result instead of embracing the bold new world of opportunities which the Internet provides for us…and them.

One more positive quote…

“Be the change that you wish to see in the world.”― Mahatma Gandhi

Not April’s Fools Anymore…

But not sure it is much better…

It is no longer April’s Fools Day. Though at times it may seem like it. Back home in America, two days ago was the deadline for filing your tax return. Paying your bill to Uncle Sam. Rendering unto Cesar that which is Cesar’s. So it seemed appropriate to take a break from #autismacceptance to look at home education. To update everyone on the outcome of our battles to get PanKwake the services to which she is entitled through the Islington Disabled Children’s Team while home educating her.

Right now I understand how PanKwake feels when she puts so much work into a sand castle and someone comes along and stomps on it.
Right now I understand how PanKwake feels when she puts so much work into a sand castle and someone comes along and stomps on it.

We won…we got everything we asked for(to just be left alone, not pressured to put her into school, no more EHCP, no home visits)…and we lost, because we wasted nine months of our lives, untold stress and placed our fragile trust once more in a system that is broken…to get absolutely more help whatsoever. Don’t get me wrong, maybe, perhaps even likely, we could have won money if we had gotten a solicitor and spent years in litigation. But at what cost to our sanity? What cost to my health? And most importantly how much of our freedoms and rights as parents and home educators would we have traded for a few thousand pounds?

When we left off with April’s Fools (https://pankwake.wordpress.com/2015/04/01/aprils-fools/), we had just discovered that the ‘independent’ panel that we had been told would determine our case was in fact the new Education, Health and Care panel to which we had independently but under pressure from the social worker applied for an assessment with. Of course, we had already refused what I make no bones about calling their ‘bribe’…£35 per week for twelve weeks contingent upon us finalizing the EHCP. I had in fact told them to “shove it where the sun don’t shine.” And yes, this girl said just that. Anyone who knows me know I would to.

To be fair, in the beginning, we had always planned to apply for an EHCP…AFTER we had completed the Care portion. We just don’t like being lied to, bullied and bribed to do anything…even something we had once wanted to do. Because in the end you think…can we ever really trust these people? Are they being nice now and then doing, saying, writing stuff behind our backs?

Anyone with a special needs child knows one simple truth…everything is a battle. And World War II showed that fighting a war on two fronts is not wise. So since things began we have always picked our battles…knocked things off one at a time. Gotten to the point that we are satisfied with her diagnosis (epilepsy, autism…a five year battle) then tackled respite care (nine months down the drain) with the plan to knock out education next. Families with the huge responsibility for caring for special children have limited time, finances and emotional resources…we cannot take on the whole (damned) world at once. And that was my intent doing it this way. I told that to our Team Around the Child committee. I told it to our first social worker, our second and their supervisor. And they all agreed to those terms.

And then withheld information relevant to us…that the changes in SEN law, which happened in September 2014 meant the panel was no longer independent…and that the whole thing was now skewed. IF the first social worker, whom I did trust, had sat down and explained how this new system would work…maybe…MAYBE…we could have moved forward with both simultaneously. MAYBE!!!

BUT with a new social worker, who wrote things like ‘I need to be in education,’ as a goal in the support plan that would go to this committee for approval…how could we possibly trust that we would receive a fair hearing? Why accept their ‘bribe’ only to be told in the end…accept the school we choose or we won’t give you the support? Maybe they could not do that? But the thing people are not understanding here…this new law is a blank slate. All those tribunal rulings that upheld the fact that home educated families had the same rights to respite care as those whose children are in school…no longer directly apply. Tabula rasa…

The thing that worries me the most is this reply which we received to our complaint…

Since the introduction of the Care Act 2014 and Children and Families Act 2014 Education, Health and Social Care Services are now required to work in collaboration to pool budgets and devise EHC plans together to meet the needs of Children and Young People who have SENs or a disability. This became mandatory and legislative for all local authority councils in September 2014.  The EHC panel was introduced on 20/01/2015, prior to this there was a Disabled Children’s Resources panel which was chaired by Operational Manager. The panel is independent in term of being situated outside of the Disabled Children’s Service.

Notice wording…mandatory…collaboration. What alarms me is that when I consulted with a home education consultant/advocate whom I trust implicitly, I was told that while they could not withhold the support, my complaint about the way they shared information behind my back and withheld information were ‘shaky’ under the new system.

What? Does that NOT concern other home educators? Next to Texas where on a couple of occasions the local sheriff showed up to escort the social worker off someone’s property because homeschooling was not grounds for abuse, the rules in England under the 2007 Department of Education guidelines on elective home education were fairly friendly. BUT if as in our case, these ‘independent’ panels can in the name of care demand information which parents are not compelled to give them under the guise of education then pardon my Texan…but they gots us by the short and curlies, folks.

What alarms me more is our case and several others that I have seen lately on home education social media sites. Take that in conjunction with the new Association of Elective Home Education Professionals, who has among its members a radical anti-home educator and professor Daniel Monk, and with the general trend across all of the EU (Germany, Sweden and France among others) to restrict or outlaw home education, and I feel like the gal in the theater crying “FIRE!”

To be blunt…as I always am…it might be inconvenient, it might not please PanKwake’s daddy much, and we might be financially worse off (or not)…BUT if worse comes to worse…no one can stop two American citizens from going home. Well, not unless they want to end up on every news channel back home and cause an international incident. Other people in this country ain’t gots that option. So we need to wake up folks…don’t keep ignoring it until it hits your door too. Unite.

Cause as my series last week Autism and Education: A Reality Check illustrated…the schools are letting our kids and us down. If we then loose or have our rights to help them the best way we know how restricted by the very people who failed them to begin with, what then? I go back to Texas (or someplace just as homeschool friendly back home)…what do you do? Maybe you will get lucky, the homeschoolers back home are fighting to bring a law through the US Congress right now that would guarantee asylum for home educating fleeing persecution/prosecution (I know dems two different words but both apply) for exercising their parental rights.

But I am standing up and fighting for our rights to educate otherwise in this country…especially…our autistic and special needs children who have already been let down by these people. Will you join your voice with mine?

The Other Autism Song…

The other day I shared Billy Joel’s “Just the Way You Are.” I said that was how I felt my 9 year old autistic daughter. April has been #autismawareness month, but I keep reading blogs and Tweets about awareness not going far enough. And it does not. Another incident at the park yesterday illustrates that.

It had been a darn near perfect time. PanKwake had found several people to play tag with…like three or four rounds of it. She had played in the sand…sharing her buckets and shovels too. I looked at her playing with children of a variety of ages even some around her own. I thought…you cannot even tell she is autistic. She seems as normal…and more polite, considerate than most of the other children.

Next to the zip line, PanKwake's favorite park toy. Proprioceptive stimulator.
Next to the zip line, PanKwake’s favorite park toy. Proprioceptive stimulator.

That was it…I jinxed it. Because it all fell to pieces in an instant. We were on the basket swing with other kids. A smaller child in the group wanted a turn. I negotiated with PanKwake…she would push the younger child. But that was not good enough for the adults in this group. They were extremely belligerent and rude, got right in my face demanding,, ’what’s wrong with your child? Why she have to stay on all the time?’

Honestly, I felt threatened as there were two of them…one a man…and half a dozen children. I tried explaining, “Yes, she is special. She is autistic.” The man, who I had seen drinking alcohol earlier, said ‘what that mean?’ I thought…they don’t even know what autism is in this day and age? So I started to explain. Their response floored me… ‘So what? You just treat them normal. We know people who are autistic too.’

It deteriorated from there. Yes, I did my fair share of yelling too. Including calling the man a drunk and telling him a child’s park was no place for alcohol. And no, again, I do not regret it. People that ignorant will NEVER learn but maybe one of the hundreds of other parents, carers, grandparents and children in that park learned…this song….

https://www.youtube.com/watch?v=4xmckWVPRaI

That is my other autism song…the one I sing to the messed up world that thinks autistic people should be forced to be ‘normal’ or stay home.

This world and IGNORANT people like that will never learn until we do like in that video. As I have taught PanKwake, you first try to explain ‘special’ to the bullies (and sometimes this works…there are good people out there…even if I forget that sometimes). But if that don’t work…you BULLY the bullies. And you play to win…you do not back down…ever.

When all those with ASD and the people who love them decide they are tired of hiding and apologizing to this world…then and only then will things change. Cause…

“We’re not gonna take it. Oh no, we ain’t gonna take it anymore!”

Autism is NOT Contagious…

It is a beautiful sunny warm Spring day. PanKwake and I are taking her carer to the park. We call it Aggie park after the dog, which we dog sit occasionally. We first went to this park which is a fair walk…but doable…when we had the dog as it had loads of green space for walking dogs. But it soon became her favorite as it is large enough to offer loads for her to do, usually has lots of children and most importantly as I said is close enough that we can walk to it.

During the Spring and Summer, PanKwake loves (or maybe that should be lives) for her time in the park. Honestly, I have spent more time outside with this child than I did as one myself (I preferred playing quietly inside the cool house with my dolls). And while I am being honest, more than all the other five children combined (we lived in the country with a huge yard and neighbors who were more than happy to let me know if they got up to anything they should not). But living in a small apartment in a big city, the parks are our only option. They also offer two of the primary building blocks for our unschool.

First of all, they provide her with the opportunity to jump, climb and run…to meet those immense proprioceptive needs of hers. Meeting her sensory needs has always been our primary strategy for addressing her autistic tendencies. As the Autism Experts (www.autismexperts2.com) postulate in their Sensory Funnel, if you address the underlying cause, i.e. the almost constant bombardment of sensations, then the other things like communication and social skills just handle themselves.

Our park bag - always good for helping PanKwake to make friends.
Our park bag – always good for helping PanKwake to make friends.

Secondly, parks also are excellent ‘classrooms’ for practicing her social skills. And she has advanced far beyond what similar children on the spectrum might be expected to. Every time we go to the park we carry our park bag. A huge bag for life filled with balls, Frisbees, buckets and shovels, parachute men, and of course bubbles…who knows what else. She has learned to share, pretty much. Of course, not perfectly, she never shares her red parachute man, and if you refuse to play tag with her, don’t expect her to share her toys with you. But then again why do adults force children to share ‘everything’ when they won’t share…their laptops/tablets, smart phones or lovers? We should all have our boundaries, those things that are just ours and which we are free to say…I don’t share that.

She has also learned to take turns…most of the time. The only time this elicits a meltdown now is on the zip line when she is contentedly sharing with two or three other children and suddenly a group of two or three more want to join. She just cannot manage to understand ‘fair’ in that situation. She cannot slot the new group into the existing one.

But overall, I am very proud of her social skills including standing up for herself and explaining her special needs to other children. Honestly, most of the time, my child is not the problem. Other children are. Or worse yet, their parents. Too often when she approaches other children and politely asks them to play tag with her, they either completely ignore her or they say, “That’s a baby game, why are you still playing baby games?” It borders upon bullying but these days she usually just walks away.

What bothers me most though are the adults…the parents, carers and grandparents, who should know better. They can be the biggest bullies on the playground. An incident the other day illustrates this best. After approaching half a dozen or more of those kids who ignored her or made fun of her, PanKwake finally found two sisters, one a bit younger and the other a tween. They agreed to play tag with her and I was ‘it’ of course. I chased them about the park for a good ten minutes or more. The younger needed a wipe so we grabbed one out of the bag (oh that’s what else is in there too). As we were doing so, she asked a question that led me to begin explaining that PanKwake was autistic.

I had barely gotten the words out of my mouth when this older woman, most certainly their grandmother rushes over and pulls them away. Now I might live in London but I am not some superficially polite Brit who will just ignore such things. I am a loud-mouthed, opinionated American and proud of it. I looked right at the woman when PanKwake asked why the girls could not play with her anymore. In front of my child and hers…honestly loud enough for half the park to hear, I said, “Because some people are rude and ignorant.”

Am I ashamed of that? Heck, no. My only regret is that I should have first said…“Autism is NOT contagious.” I am thinking about making me a shirt that says that actually. It is what I want all those parents, carers and grandparents to know…it is not a cold or flu…or even Ebola…your child cannot catch Autism from playing with mine…or touching her…even from being her friend.

AUTISM IS NOT CONTAGIOUS!!!!

Autism and Education: A Reality Check – Part 2

One important thing to remember about autism is that it is called a spectrum disorder for a reason. Like the word ‘normal’ it is as varied as the people who have it. There is a popular saying in the autistic community: ‘if you know an autistic person…you know one person with autism.’ Autism is everything from the non-verbal child who sits staring and rocking…to the Hollywood savant Rain Man…to PanKwake, a 9 year old body with a 3 year old’s impulse control and the wisdom of a septuagenarian…to those so high-functioning that you dismiss their autism as eccentricities because they are billionaire computer moguls. The autistic spectrum is a broad and as elusive as a rainbow.

That makes it especially hard for schools to cater to what in mathematics terms are outliers (at the far end of the Bell Curve). In the one room school houses that dotted the America frontier, the classroom was everyone from six or seven up to early teens with the older children instructing the younger as much as the teacher. If a student was not ‘getting it’ no big deal. The teacher worked as hard as possible to teach the basics…fundamental reading and addition and subtraction. The parents were simply advised that their son/daughter was not good at ‘book learning’ and they sought other options…farming, blacksmith, working on the railroads, sewing. There was a clear recognition that different people have different talents. They would have scoffed at the very idea of ‘standardized tests.’

A hundred years later when I went to school in America, we were segregated into streams (red, white and blue). One was for those who were what was then called…a bit slow. Another was for the ‘normal’ kids. The third was the ‘gifted and talented.’ We would be mixed in our homeroom for a portion of the day. All studying things like science and social studies as well as PE and lunch. But for reading and math our color was together. One teacher taught reading and another math. So while the reds were reading the whites were doing math. The problem with this system was that us kids were pretty smart (even the reds). We figured the whole game out…and as children will do it became fodder for bullying. ‘You’re in the dumb class.’

One good thing about the system though was flexibility. Without the focus upon ‘standardized’ and national curriculum, the teachers got to really know us children. For me, I had some mild form of dyslexia. No matter how hard I or the teachers tried…letters and words did not make sense to me. Sight reading, phonics…it made no difference. Then around ten it just magically clicked. Now we would say that my brain developed, new neural pathways formed. In the space of one grade I went from red (slow) to white (gifted). And I have never stopped reading or learning since…and never plan to.

Fast forward another quarter of a century to my special needs son and they now had ‘special ed’ classes. Unlike my red/slow group these children were deemed more severe and placed in smaller classrooms by themselves. Of course there might not be enough to have a class for every grade so they were grouped by similar age groups: first and second grade, fifth and sixth, that sort of thing. Of course, ideally these children were ‘mainstreamed’ as it was called for those classes that they could manage, i.e. PE and perhaps art or music. The problem was that they carried that label…’special ed.’ And being forced to rejoin the mainstream for such short periods of time really made the bullying even worse than it had been for me. And no one ever ‘graduated’ from special classes to ‘mainstream’ the way I had.

I will be candid here. I am not a person who believes in regrets but if I did…putting my son in school would be one. You see back then my ex-husband, the preacher, and I were homeschooling all four of our children. Like me the older two struggled to read, but when they got (at that magical ten)…watch out. But with this ‘special needs’ child, we just did not feel ‘qualified.’ So we put him into the local school (the others followed shortly afterwards…it was easier than homeschool). But he was always bullied…always the outsider. And I would say to him…I am so sorry. Ironically, the ‘experts’ never managed more than that one room school house could…third or fourth grade reading (about the level of a newspaper) and basic math. It was not a good trade…if I knew now what I know then. Oh wait I do and that is why I home educate his little sister.

Of course, we live across the pond now in the UK and things are different. Over here the options for parents with special needs children are different too. While you still have the term ‘mainstream’ it means something vastly different. If you choose to mainstream your child then they are with their peers for the whole day…well except maybe brief periods of one-on-one. For some children with more severe physical, intellectual or behavioral issues they may be given a ‘teaching assistant’ or one-to-one support to help them manage the classroom. And in the early years…with the right school, right teacher and a great teaching assistant (like my older daughter) then this can work surprisingly well for some children on the autistic spectrum.

But in all my years networking in the special needs community I have never once met a parent who felt that it was working for their older primary or especially secondary student. Let’s be honest…human beings are one of the most vicious animals out there. We are also cannibalistic at heart…we eat the weaker among us…just with bullying. And it is BAD! Broken ribs…suicidal…panic attacks…you name it and I have heard it.

Of course the other option in the UK are special schools. As opposed to the USA where that ‘special ed’ class may be exposed to bullying in the cafeteria or on the playground, in these schools everyone is the same…and different. We looked at the local one for autism for PanKwake, but the problem is…most of these children are at the more severe/non-verbal end of the spectrum. The schools are geared more towards teaching such basic things as picture card communication.

So for someone on the high-functioning end of the autistic spectrum you see the dilemma…mainstream with bullying or special school that may not be the right fit for their intellectual capacity. Honestly…what is a parent who wants more than just a place to dump their child so they can get a bit of rest, who demands not just good enough but the best possible education and future for their child to do?

Well…I’ll offer one possible solution to that one…tomorrow…

Autism and Education: A Reality Check – Part 1

This week as part of April’s Autism Awareness week, we look at education, specifically unschooling, and why we feel that it offers children like PanKwake at the higher end of the autistic spectrum the best possible future…Today we begin with…

What is ‘suitable’ education? At least in terms of UK law. Section 7 of the Education Act of 1996 says:

Compulsory education

7: Duty of parents to secure education of children of compulsory school age

The parent of every child of compulsory school age shall cause him to receive efficient full-time education suitable—

a: to his age, ability and aptitude, and

b: to any special educational needs he may have,

either by regular attendance at school or otherwise.

Just some of the many resources we offer PanKwake to facilitate learning...
Just some of the many resources we offer PanKwake to facilitate learning…

In other words…it is the duty of ALL parents, even those who delegate the responsibility to schools, to ensure that their child receives an education that is ‘suitable’ to his/her ‘age’… ‘ability’… ‘aptitude’…and ‘any special educational needs.’ Is it any wonder that so many people choose to simply put their blind faith in ‘education experts’? But the wording of this section of the law is an appropriate distinction for special needs children and especially for those on the ‘high-functioning’ end of the spectrum.

During our recent battles with Islington’s Disabled Children’s Team to get PanKwake the services she was entitled to, this became a huge point of contention. The care plan that her social worker presented to us first included the inflammatory wording…”I need to be in education.” When I pointed to the law and our rights to educate otherwise, she changed the wording to ‘age appropriate education.’ Yet again I brought out this law to show her that especially for special needs children there is MUCH more to it than just that.

But before I move on to that, first I want to explain a bit about…age appropriate. One of the first people to look at the issue of how children learn and develop was a psychologist named Jean Piaget (http://www.simplypsychology.org/piaget.html). He believed that children moved through four stages, but I won’t go into the details of those here (follow that link to begin to understand his theories). What I want to point is that Piaget never placed any ‘age appropriate’-ness on the stages. In fact, he specifically argued that while the stages were sequential (i.e. one follows the other and none can be skipped over), every child was an individual and moved through them at his/her own pace. Furthermore, he felt that a child should not be ‘forced’ to learn things that were beyond his stage of development.

The problem though is that education is a SYSTEM. And systems are NOT about the best interests or needs of the individual but of the whole, of the system itself. So when Piaget began to filter into the educational systems in the mid-1950s, there was no room for ‘pupils’ to move at their own pace. So they began to adopt ‘age-appropriate’ guidelines based upon theories that were ‘ageless.’ Basically threw out the baby and kept the dirty bath water. Thus pre-operational is Key Stage One in this country and ends at age seven. Period. Full stop. By Year 2, you are expected to have developed an attention span and self-control necessary to sit quietly on your chair while you are ‘taught.’

But for those with high proprioceptive needs like PanKwake this is a living Hades. They need to be moving…constantly. Their minds cannot learn when they are battling against their body’s need to jump, run or climb. Even with a recognition of this need, the modifications which most schools use to address SEN codes such as exercise balls instead of hard chairs are too often viewed by teachers as distracting for other students…rewarding bad behavior.

As a result as Mister Spock said… “The good of the many outweighs the needs of the few…or the one.” The hard truth is that in a classroom of thirty students with one adult (or at best two), one child does not matter. The system matters. Keeping order matters. In that situation, your child’s learning style takes the back burner…matters very little other than lip service to meeting special needs. It becomes a tug of war between you and them with that ‘age-appropriate’ taking precedence. If his/her peers are ready to read, then your child must be also. Otherwise, she gets left behind. Which then becomes fodder for bullying…dummy, stupid, you can’t read.

This becomes an even bigger issue if like PanKwake, your child is ‘high functioning.’ In many ways, high functioning is just another way of saying…your child don’t look different. And if she don’t look different then the expectation is that she should just learn to act like everyone else. That is the bleak reality of thousands (tens of thousands) of children and young people, who are at that higher end of the autistic spectrum. Their ‘abilities, aptitudes and special needs’ are sacrificed on the altar of ‘age appropriate’ in order to meet the needs of the many.

Home education, education otherwise…and especially unschooling offer an alternative…but that is getting ahead of myself. More tomorrow…