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.

Advertisements

New Generation Reader…

I shared a couple of weeks ago that my only concern with our unschooling approach to home educating PanKwake is reading. Specifically, that at nine years old she still cannot read and does not even know all the letters of the alphabet. This from the child, who can hear a word once in context and forever after use it properly. This from the child, who can remember something she heard about science or history. But her neural pathways will not allow her recognize letters? To the point that she avoids even looking at the words when I read to her. Add to that mix the fact that Mommy is a writer…and you can see why I am so insecure.

I keep reminding myself that I did not read until I was ten. That my two older children did not read until they were ten. That we are all bibliophiles now. Added to that I remind myself that the Asperger’s Experts, two young men who understand high-functioning autism from the inside, say that somewhere in the teens or early twenties things just click in the brain of the aspie and that they surpass the NT (neurotypical). I console myself that even if she does not ‘get it’ until then that she will learn reading when her brain is ready the same way she learns everything else…absorption. That is after all why we unschool….because it works for her.

BUT still I feel like a bad mother. A bad home educator.

Then I had coffee with my older daughter, who has spent five years working as a teaching assistant, working in schools with other children like PanKwake. She is now going to university to become a teacher. And there has been such a marked difference in how she sees my home educating her sister. When she was working in the schools, all I heard was what I was doing wrong…how her sister needed to be in school. I will never forget the morning about a month after she started uni when I got a text that said… “I am sorry, Mom. What you are doing with PanKwake is just right.” Because when she learned the theory behind learning and child development…not National Curriculum…she saw things very differently.

I thought things could not get any better than that…until we shared that coffee. I brought up my insecurities…and what she said floored me. She reminded me that I always say PanKwake and others on the high-functioning end of the spectrum are the next jump in human evolution, the true X-Men…homo autistica. She said to me, “So why don’t you see that she is the next generation reader too?” She went on to explain that reading is about taking in information, analyzing and processing it. She asked me a brilliant question…who is the ‘real’ reader the child who take an hour to read one page but understands everything that was said…or the one who reads two chapters and cannot tell you anything that is happening? We stood up and hugged it out…right there in the coffee shop.

PanKwake's bookshelf has long ago overflowed.
PanKwake’s bookshelf has long ago overflowed.

It was just what I needed to hear. When I read to her PanKwake can understand the whole story…she will even remember if you get something wrong. With the exception of hypothetical questions like…what do you think happened next…or how do you think he is feeling…she can answer anything you ask her. But those questions are kickers for anyone on the autistic spectrum.

And one day…some day…in her time…the rest will come too. Thank you to our beloved Mere-Mere. You are the next generation teacher…and maybe if I could guarantee PanKwake would have nothing but teachers like you…I would not need to home educate. I love you and am proud of you.

Is it them? Or is it us?

I saw this amazing blog post on one of my Facebook groups. It is by a clinical psychologist, Bruce Levine, who writes about how societal coercion, those shoulds and musts that we learn early and fear to ever break, is perhaps the root cause of mental illness. He relies upon studies and anecdotal evidence comparing our Western societies (and Eastern to an extent) to the indigenous populations whereby cohesion and community are more important than ‘getting things done.’

He spends a great deal of time discussing how different parenting is within these indigenous societies. He talks about how children are seen as individuals with their own needs and rights. How beyond supplying them with access to food, water, something to keep them warm and a place to sleep the children themselves make many of those choices for themselves. When to sleep. When to eat. When to wear clothes and when to run around naked.

One source that he quotes is Jared Diamond, author of From the World Until Yesterday (2012). Diamond has actually worked with indigenous people in New Guinea for nearly a half century. In his book, Diamond uses terms such how laissez-faire parenting which has abundance of nurturance and a minimum of coercion. He says that this parenting style is “not unusual by the standards of the world’s hunter-gatherer societies, many of which consider young children to be autonomous individuals whose desires should not be thwarted.” Diamond states:

“Other Westerners and I are struck by the emotional security, self-­confidence, curiosity, and autonomy of members of small-scale societies, not only as adults but already as children. We see that people in small-scale societies spend far more time talking to each other than we do, and they spend no time at all on passive entertainment supplied by outsiders, such as television, videogames, and books. We are struck by the precocious development of social skills in their children. These are qualities that most of us admire, and would like to see in our own children, but we discourage development of those qualities by ranking and grading our children and constantly ­telling them what to do.”

Levine compares this to our own societies when he says:

Modernity is replete with institutional coercions not present in most indigenous cultures. This is especially true with respect to schooling and employment, which for most Americans, according to recent polls, are alienating, disengaging, and unfun. As I reported ealier his year a Gallup poll, released in January 2013, reported that the longer students stay in school, the less engaged they become, and by high school, only 40% reported being engaged. Critics of schooling—from Henry David Thoreau, to Paul Goodman, to John Holt, to John Taylor Gatto—have understood that coercive and unengaging schooling is necessary to ensure that young people more readily accept coercive and unengaging employment. And as I also reported in that same article, a June 2013 Gallup poll revealed that 70% of Americans hate their jobs or have checked out of them. Unengaging employment and schooling require all kinds of coercions for participation, and human beings pay a psychological price for this. In nearly three decades of clinical practice, I have found that coercion is often the source of suffering.

And I thought…this is the best argument I have heard for unschooling in a long time. Yes, I cannot provide my daughter with that type of nurturing society that is free of coercion. BUT I can give her that type of home and education through home education and unschooling.

But my mind did not stop there. One of the unique measures that Levine uses to compare indigenous societies with our modern world is the prevalence of schizophrenia. He quotes several studies that show this mental illness is virtually unknown among those indigenous tribes. And I had an ‘ah-ha’ moment…I could not stop myself from wondering…what about autism?

Do not get me wrong, I am not the type who believes that it is vaccines or viruses or food additives or smog or (insert theory) that causes autism. I believe that it is much more complex than that…a combination of factors.

What I do wonder though is…would these people even notice? Would it matter? Or would this type of laid-back, “laissez-faire parenting which has abundance of nurturance and a minimum of coercion” lower the anxiety in our children to the point that their behaviors virtually ceased? Perhaps their enhanced sensory perception would even be seen as gifts in a world were nature ruled with smell, sound, taste and sight?

Pieces of a Puzzle…

Today had been a total and completion validation of my decision to unschool PanKwake. For those of you, who may not be familiar with unschooling, my favorite quote is by Pat Farenga, co-author of the new edition of Teach Your Own: “When pressed, I define unschooling as allowing children as much freedom to learn in the world as their parents can comfortably bear.”

And that is the key…bearable. One area and only one area where I doubt myself is…reading. PanKwake is nine and cannot read. She has excellent reading comprehension skills mind you. She can answer almost any question that you throw at her about a story you read to her…except things that would boggle any autistic child mind like: what do you think happens next, how do you think he feels. But when I use my fingers to track words or even purchase technology like read-along books and apps, she refuses to even track the words with her eyes. She cannot even accurately recognize all the letters of the alphabet.

I am a ferocious reader…and a writer. Imagine how I feel about the possibility that my incredibly smart and talented little girl might never share that love of the written word. More times than not…I feel like a complete failure in this one area.

Even though:

  • I could not read until I was ten myself. Words made no sense to me no matter how hard my teacher tried or the tutor that they got me from the local college. Then one day it just ‘magically’ clicked…and I went from being unable to read, ‘See Spot run. See Jane run. See Dick run. See them run,’ to reading Little House on the Prairie in less than six months.
  • The exact same thing was true of my two oldest children, who were also homeschooled…and in a much more structured way. They were both angry because their four year old brother, whom we were not actively teaching to read yet, was looking over our shoulders and reading better than they could. And now both LOVE reading…and one has a degree, the other is studying to become a teacher.
  • We put my other (adult) special needs son into school because we felt ‘unqualified’ to teach him and believed the ‘experts’ could do better. When he graduated, he is barely functionally literate. And for that expertize…he endured ten years of bullying. (I am sorry my beloved son…I do not have many regrets in this life but putting you in school is one.)
  • I know and have read extensively on Piaget and child development theory and I know that PanKwake remains in the pre-operational stage and lacks the focus and attention to tackle something she finds this challenging.
  • I can see all of the good things that unschooling has done for her…social skills that even few autistic adults have, better emotional regulation, and most importantly the confidence and happiness that she had lost when she was at school because of bullying.

Even though I know to the bottom of my heart all that stuff, I still feel like I am failing. Even though I am committed to waiting for those signs of maturity and development that will tell me she is ready to tackle it. Even though I know that she lacks the ability to transfer short term memory to long term…a brain development and growth issue that we await. Even though I tell myself that the more important even than reading is the ability to think and reason…which she does superbly. Even with all of that…I still doubt.

Until today…

It will all just fall into place...one day.
It will all just fall into place…one day.

She came to me today and wanted to play with her ABC puzzle. That is amazing because puzzles are one of those pre-reading skills that have been lagging behind. So I would have been happy and considered it ‘reading’ to do ANY puzzle…but her letter one?!? Granted, it was about five minutes and I lost her, but that in itself is confirmation of those developmental milestones that we must achieve first.

If that was not enough, she then showed me her strengths by telling me that she was ‘beta’ testing a new design in Minecraft and please do not turn off her television as she was ‘multi-tasking.’ How can any teacher, even a kiss-ass one like my daughter will be or my son is, support those strengths while minimizing her challenges? Especially when they are under pressure from bureaucrats to meet standardized test scores that have nothing to do with the needs of the individual child.

To top it off, when her carer was here…she agreed to do it again with her. One of the other puzzles was strewn across the floor so I suggested that they could do that one together and help clean up at the same time. Of course being autistic she wanted to repeat her earlier success and do the same one we had earlier. Fair enough. So I begin to clean up the other one. She looks up and sees that I have more of mine put together than she does. She comments that it because I have fewer pieces. Her carer, who is studying to become a teacher with her older sister, comments that it is the same number of letters. But you see my pieces were bigger, so thus she thought there were less of them. The very idea of conservation of mass/space that Piaget sees as a key marker between pre-operational and operational thinking. I pointed that out to my carer, who was rightly impressed.

And in that moment I knew…unschooling…allowing her brain to grow…and awaiting key child development milestones that harken reading readiness was the absolute right and best choice for PanKwake. And home educating is the only place with the freedom from national standards, one size fits all/no one, and standardized testing that is failing not just our autistic and special needs children, but all of our children, our families, dedicated teachers, the schools and especially our society.

And today is why I believe that unschooling offers a brilliant way forward for many of our children on the autistic spectrum.

Like pieces of a puzzle that just magically fit together. It will all magically come together…one day…in her time. 

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?

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 5

Yesterday, I debunked a few of the home educating myths. Today we get into the nitty gritty of this thing called…home educating, homeschooling and education otherwise. The most beautiful thing about it is that it can be as unique as your finger print like your beautiful child and you. Some people, especially in the beginning, think that it must be school in the home. The buy loads of books and sign up for online academies. They get up early and then have their children sit at the kitchen table with worksheets or a computer desk. But it does not have to be like that.

We have chosen to home educate utilizing an un-schooling approach popularized by John Holt’s book Teach Your Own and based upon age-old educational philosophies of Jean-Jacques Rousseau, Paul Goodman, and A.S. Neill. Like the philosophy itself practioners resist the need for further definition. Yet when pressed:

  • the Freechild Project defines unschooling as the process of learning through life, without formalized or institutionalized classrooms or schoolwork
  • Pat Farenga, co-author of the new edition of Teach Your Own: “When pressed, I define unschooling as allowing children as much freedom to learn in the world as their parents can comfortably bear.”

While this concept may seem highly radical, unorthodox and risky, it works particularly well with children on the autistic spectrum for which control is a central issue. In fact, it is the original form of schooling used until the late 1800s and continues to be used throughout many areas of the world with the family and community teaching each child that which that individual child needs to know to survive in his/her world. It is further augmented with apprenticeships in later life.

For PanKwake in particular, her day and her learning are much more focused upon moving and doing, exploring and yes, most definitely learning. When she wakes is about the only time all day where she is slow. For an hour (sometimes much less) she remains sluggish and under-responsive to stimulation. She will eat something, watch a bit of TV or perhaps play games upon her computer or iPad.

PanKwake cooking pancakes
PanKwake cooking pancakes

But once this initial quiet before the storm is over, she is off…making, moving and doing. That may include counting all the birds that she sees that day in a little notebook, or making cards for friends, or cooking with MomKwake in the kitchen. It will always include loads of physical activity to satisfy her need for extreme levels of proprioceptive stimulation whether at a playground, the pool or a soft play center. This time is also ideal for focusing upon her social skills.

After this is finished in the evening, she will unwind with television or iPad again. Reading plays a huge part in her night time routine with her listening to several books as she prepares for bed.

You see the most basic principle of unschooling it that everything we do is or has the potential to be a learning experience. And today with smart phones and tablets it is easy to take ‘school’ with you wherever you and your child go. It becomes about facilitating learning.

For instance, the other day we were walking to the park and PanKwake asks…’what is the biggest flying bird alive now?’ I know I am dating myself here but in my day that would have necessitated a trip to the library and looking it up in Encyclopedias and/or books. It could have taken an hour, maybe more, or scanning/reading through all kinds of information about birds to get the answer. Not today! I pull out my phone. Open the browser and type in the question…California condor, Andean condor and albatross. In less than a minute.

Unschooling is basically a continuation of the parenting you did when they were toddlers…Mommy, why is the sky blue? Daddy, do fish drink the water they live in? And of course…what is the largest flying bird alive. The questions never end and your job becomes to first foster that excitement about learning and eventually to teach them how and where to find the answers for themselves. Of course in this Internet world, that also includes teaching them who or what sources they can trust…what is reliable information.

Then it is stepping back and letting them explore this big wide world for themselves. And what could be more rewarding than instilling a love of learning for a life time in your child.

So that is our journey so far…and why we believe that home educating and unschooling is the best choice for PanKwake…and perhaps even for other children on the autistic spectrum for whom the world and especially the classroom is too noisy, too bright, too crowded, too smelly…too much. Children whose differences make them the bully’s favorite target. Children who truly need the one-on-one consistent and caring support of both a mother and a teacher…in the same person.