The Greatest Gift

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We came to home education like many others, carrying scars from a school system that was eroding my child’s self-esteem, and our sanity. School, though short-lived, had been a time fraught with stress, anxiety, and the regression of everyone’s skills, not least of which were mine.

As an autistic adult, I had come to learn so many things that many neurotypical people take for granted – effective communication skills, the art of diplomacy, negotiating group situations and the art of Zen. These were gradually eroded as my child went crashing through the cracks of the school system, despite our very best efforts. This is not the story I’m going to tell you, however, because it isn’t mine to tell. I will say that school did not suit my eldest child, and leave it at that.

Everyone’s education story begins at conception, and some will say even before that. Ours was a joyful journey until we hit the school system, which I now view as a bump in the road that set us back significantly. It is now joyful once more, but it was a hard road coming back. I felt guilty for the longest time for inflicting school on my child, but just as he loves driving on the jarring, corrugated bit of dirt road near our house because it makes his voice go funny, I now see the positives in our jarring, corrugated school journey.

I don’t know that I would be the home educator I am today without it. Would I change it if I could? Yes, for my child’s sake, every time. But not for mine. While so many of my skills regressed as my anxiety and stress levels peaked, my advocacy skills were honed. I became some weird sort of yoga machine that relied on my forty-five minutes every morning at sunrise to get through the day, and I became fit and strong. My meditation expanded to include minutes in my days that were previously given to other things, and I learned the true value of sitting and being. These things were necessary for survival.

And I got to see first hand what happens when a child butts up against a rigid, inflexible system. I never want to be that for my child; for either of my children.

I run a group for almost 550 parents of autistic children. I hear so many stories, constantly, about children who are dragged into classrooms crying and resisting, parents who have to negotiate with children to go school, children who are learning to hate education and I wonder, why? Why are we doing this to children? How have we managed to convince parents that the only way their children will “get ahead” is to go to school? Parents have had their voice, their self-confidence and their belief in their intuition eroded by a society and a system telling us that we don’t know what is best for our kids, that the raising and educating of our children is best left to “experts”. We are often sent off with a pat on the head at best, or at worst gagged, scorned, lied to and ignored in the school system. Professionals tell parents that if they home educate, their child will meet a “bad end”, that they will end up antisocial, unemployable, and locked in their rooms all day. The reality is that 60% of autistic children do not finish high school.

I started running home education information nights last year for this very reason – to dispel the myths that are constantly perpetuated about home education, especially as they pertain to autistic children and adults. I believe so strongly in advocating for autistic children in school, and I do not know if I would have such strength in that conviction if we had not been there ourselves.

The reality of home education is that it has, over time, repaired the rifts that were beginning to show in our family. The fabric of our lives was starting to fray around the edges, and as I stood there, seemingly helpless, looking at it, I could see how the whole thing would unravel before me unless we made a change.

Home education has provided us with time and space to be ourselves, to be together, to be united in common ventures, to be in nature, to be excited and quiet and productive and lazy, and to just…. be.

It has given us the space to be autistic, without judgement, without need for conformity, without ridiculous, arbitrary goals that someone else has set and deems important. It has given all of us the opportunity to take our strengths and run with them. It has given us all deep, abiding friendship, community, caring, self-worth and appreciation for who we are and what we bring to the world.

Living and learning together is the greatest gift a parent can give a child, but it is not as great as the gift that the child gives the parent. As parents, we get to watch them discover, enquire, expand their confidence, grow their self-esteem and that innate sense that they are worthy, that their opinion counts. They give us purpose, a sense of self that is not just tied to ‘self’ but to ‘other’. It is a connection with other humans that is precious and rare. They give us personal growth and self-awareness. They show us ourselves, perfectly flawed human beings that we are. They give us the very best years of our lives, and what could be a greater gift than that?

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Minister’s Gambit

So, after a less than edifying meeting with the Education Minister yesterday, I wrote him a letter….

Dear Education Minister,

Until yesterday, I viewed you with an element of compassion. It is in my nature. I felt for you, because I thought that as a man with a lot on his plate, you had to listen to advice from people with less than our whole interests at heart. I thought you had just chosen poorly, and that surely, if you were meeting with us, we could exchange some ideas, knowledge, and expertise.

Because you know, we have expertise and skills in spades. We are experts in our children, we are experts in child development, we have wicked serious skills in negotiation, articulation, organisation, seeing the wood as well as the trees, we have patience and we have compassion. A lot of it. We are experts in home education.

When you invite us into your office, cut our time short and do most of the talking, you insult us. I was disappointed, and deflated. But in the crusty dark before dawn, after an admittedly restless sleep filled with dreams of what could have been, I feel…determined.

Once again, I see time stretching before me, when my children get less of me than they deserve, than is their right, in my mind at least. And so, we try not to wear ourselves to nubbins as we adjust to your latest move on this giant chessboard of politics.

It’s tedious. It’s unnecessary, because yesterday I had an open heart and no agenda other than to connect with another human being.

I am social. I love interacting with other humans. We’re social creatures, and problems are best solved collectively. When one party steamrollers another, however, they surely cannot be surprised that when the other finally peels itself off the bumpy, grotty tarmac, they are scuffed, possibly a little broken, flat, disappointed in the preceding events and a little determined. We refuse to disintegrate like a little dust beneath the heel of the Government’s boot.

I know we are inconvenient. I know we are headache-inducing. I can imagine that we are a Problem that just needs to Go Away.

But we cannot just quietly go into the night. We cannot just abandon children, even if most of them are unknown to us, and not technically ours.

Here’s something we all need to remember. Children are ours, all of them. They are ours to care for and nurture and protect as a collective, even if we don’t know them. Because they’re our future, and we’re theirs.

And so today, amid the chaos of thirty-odd children playing together in the chilly autumn air, we will make plans. We will find a way to be heard. Because that is all we want. And because it’s what we all deserve.

Quantifying intelligence

I was recently asked if I was as clever as my son when I was his age. I stood there, stirring spoon in hand raised in mid-stir, and stared, lost for words. How does one begin to answer this question?

I finally answered that I don’t think my general knowledge was as broad as my kids’ at the same age. This is a paltry answer, but “yes” or “no” would have been no answer at all.

Our obsession with intelligence, its measurement and the subsequent conclusions we draw about human beings baffles me.

Intelligence is not fixed – how can it be? Our brains are not steel boxes that are rigid and unchanging over time, excepting for the occasional dent. They are living organs, they grow, they change, they develop and are in a constant state of flux. Even if you have what Carol Dweck calls a fixed mindset, and you believe that intelligence is innate, that we are born clever or otherwise, you must surely acknowledge that our mental agility and ability, our cognitive functions and our ability to perform on an intelligence test will vary with how much sleep we have had, with our stress levels, and with many other factors, not least of which is our willingness to participate in an intelligence test in the first place. An IQ score doesn’t allow for how bored we were doing it, or how distracted, or whether the tester gave us time to process and formulate our answers.

And yet, intelligence is not a fixed thing. It is not a number that remains the same throughout our lives, our childhood or adulthood, throughout a year, a month, a week, or even a day. We improve our “intelligence” through practice and through hard work. We all have innate skills and talents that we find easier than other things, but we must still hone them through practice or they remain mediocre, and languish unfulfilled. I find writing a pleasure and (when my muse has not fled for the hills) pieces can develop almost effortlessly at times, but I have practised (a lot) and continue to do so. If I don’t use these skills for a while, I become rusty, I must wipe the dust off my keyboard and write a string of clunky pieces before the words once again begin to flow. And even then, some days everything I write is uninspired, but at 11 pm when I am about to go to bed, phrases start pouring into my head and sleep is postponed as I furiously write it all down. I have a beautiful friend who is a dancer and who works in a very similar way.

An IQ test measures how efficient we are at that point in time, that morning or afternoon, at doing… IQ tests. It does not measure our artistic abilities, our ability to put words on a page in a pleasing arrangement, our athleticism, our observation skills, our flexibility, our communication skills, our ability to take others’ perspectives, our patience, our sense of humour, our passion for transportation systems, our listening skills or our emotional intelligence. It certainly does not measure our compassion or our ability to love and to empathise, which are surely the most important traits a human being can possess.

We make judgements about people based on a number, and we ask them to take that number forward into their lives, which can be profoundly affected by a measure that is fluid at best, and deeply flawed at worst. We decide who can go to school where, based on a number. We decide whether people are “gifted”, a term I am deeply opposed to – we are all gifted in some way, and we need to find ways to take our gifts and run with them. For this, as children, we rely on the adults in our lives to see our gifts, to nurture them and to tell us it okay to be different and to be gifted in our own unique way. We should not have our gifts dismissed just because they do not help us score well on an “intelligence” test that provides a very narrow definition of intelligence.

Many of us let our IQ define us, our children, our friends. People are labelled as “gifted”, “twice exceptional” or “intellectually disabled” and the temptation is to stop looking past that label to the unique, amazing person beneath. We are all exceptional. We affect our own and other’s view of ourselves, of our children. We often limit our options because we let a number define us. Worse still, we limit our children’s options because we let others define them by a number. You can only be called “clever”, “intellectually disabled” or something else so many times before it will affect your self image and how you view yourself. None of these labels are helpful. They put limits on us, and foist roles on us that exclude other avenues that could, and should, be explored. They tell us that intelligence is a fixed character trait, when nothing could be further from the truth.

And they tell us that what is prized the most is our ability to score well on a test that cannot capture the essence of what it is to be human.

This crazy little thing

There’s this crazy little thing called Government that we all need to survive…. It has only recently occurred to me that our country is only a democracy for one day every three years (okay, two if you include State elections). The rest of the 1,094 days (give or take a few), we are effectively a dictatorship. Yes, I’m apparently slow on the uptake.

My disenchantment with politics and the political process is by no means new, but my disillusionment has grown to epic proportions.

The Victorian State Government recently released the draft Education and Training Reform Regulations (2017), a horrifically biased and scary document, especially as it applies to home education and children with special needs in school. I will not go into detail, as there are already adequate summaries available on what the proposed changes entail and what they will mean for home educating families.

I have recently discovered the ineffectiveness of our system. I call it a dictatorship because having your voice heard on an issue, let alone effecting any change, is monumentally difficult. I should know. A group of us have been working hard at it.

When I recently called the Department of Education and Training (DET) to find out when the new regulations would be tabled, I was informed that the plan was to table them a handful (and I mean less than four) days before the current regulations sunset. I questioned that – what if the regulations are disallowed by the Scrutiny of Acts and Regulations Committee? Or by the Legislative Council? And how can scrutiny happen after the current regulations have sunset?

Apparently, all is well. The current regulations will sunset. The new regulations, which we have been vehemently opposing, will come into effect. According to DET there is no way that they will be disallowed. (I’m getting a tick in my eye just writing this). This is because, and I quote DET here, “The regulations will have already been through so many checks and balances” by the time they are tabled.

I was stupefied. Really? I was unaware of these gatekeepers of people’s freedoms and rights, especially in relation to being heard by the Government Machine and its rusty cogs.

So, I pressed. What checks and balances? Could they enumerate them for me so I could contact these esteemed and worthy institutions which would safeguard our right to fair, consultative and supportive regulations? Well, here they are:

  1. The consultation process that occurs with stakeholders before the draft regulations are written. Oh, whoops, they forgot to do that. Despite being reminded by the Home Education Network. Despite receiving submissions from home educators. Must have slipped their minds that home educators are stakeholders in…. home education, and that therefore their opinions, knowledge, expertise and concerns must be taken into account. Never mind. Onward and upward….
  2. The Office for the Commissioner for Better Regulation. I must admit, I have never been so grateful not to have a mouthful of tea. Ever. I would have sprayed it all over my lovely Lenovo. Um, yeah, Anna Cronin. The esteemed, trustworthy, honourable and effective Commissioner for Better Regulation. Who in her letter certifying the draft Education Regulations misquoted, misinterpreted and misled. Quite appallingly, in fact. I think she must have read a different set of documents and mistakenly rubber stamped those instead.
  3. The submission process. Well, as a community we made over 400 submissions. I would be surprised if they change much other than the decoys they have inserted. That will be their “compromise”. I await their responses to my eight submissions with bated breath. The very Department whose questionable standards have lead many to home educate are writing the rules on home education. Yep. I told you, I am disillusioned and jaded.
  4. The Governor’s Council. I was excited about this until I realised that this “check” is performed by the Premier and his Ministers. Need I say more?
  5. The Scrutiny of Acts and Regulations Committee. I really, really hope this is not true. DET told me that SARC just rubber stamp everything. I want to believe that a committee composed of a majority of MPs from the Government will be fair. I want to believe. I want to. Very much. I know there are good eggs on the SARC. But are any of them from the Labour Government?? Will they, for the first time in the 18 months since the current Government came into power, stick their necks out and go against their party?

So, here I sit, jaded, disillusioned, tired, but very, very hopeful. Let’s hope the rusty old wheels can squeak into action, and stop the Government giving complete power to an Authority that is hostile to home education. Let’s hope that power is not deferred to a process that is beyond parliamentary scrutiny. Let’s hope that this crazy little thing called Government will work in the favour of justice, fairness, and human rights.

I’ve been…. absent. OK, maybe slack :P

It has been a while (ahem) since I last wrote a blog post. In the intervening time I have been inundated with Uni, homeschooling, life challenges and most recently with opposing some ridiculous draft Education regulations.

So here I am, starting up again. I barely got started last time when life smacked me upside the head with a pacemaker and some other fun activities to keep me occupied.

I’m back, and I’m adding a new focus (while keeping the old one). You’ll likely be seeing some posts about home education (AKA homeschooling) as well as autism. Bear with me. This is my life and one of my loves.

And so here it is… My restart post. Ta-DA. Not much to look at, I grant you, and brief. But oh, so worthwhile the discovery 🙂

Oh look at me… I’m being autistic

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Today was my first day back at uni in my Masters level teaching course. I was sitting in a maths lecture, and we were using materials to explore teaching fractions concepts. The mature age student sitting behind me was sorting her bits of paper by size and putting them in rows. She turned to her partner and said, “Oh look at me… I’m being autistic!” and then laughed herself silly.

I am no longer offended by such remarks, but I have to wonder what the experience of autistic students will be in her class? I want to tell her that being autistic is so much more than lining things up.

I have written an essay titled A Room with an Autistic View for friends to share with their kids’ teachers to help them understand what it is like to be a student in class. I will be sharing it with my fellow preservice teachers in the next couple of days. Wish me luck…

Letter to the mum of a newly diagnosed boy

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A close friend of mine is facing the arduous road to an autism diagnosis. I say arduous not because of the outcome, but because of the emotional hits you take on this journey. I want to help her remember along the way that her boy is much more than the sum of his challenges. The road to diagnosis is so very hard to overcome. The problem is that we are forced to spend so long focusing on our children’s deficits, and we are left feeling bereft, inadequate and overwhelmed.

Years after receiving our diagnoses and having to walk this path, I am a firm believer that we need to focus on our children’s strengths, and work with a strengths-based model rather than the deficits model that is more widely employed.

I also believe that we need to better support parents in their journey along this path, and to help them remember all the beautiful things about their children.

A couple of years ago I wrote a letter to the mum of a newly diagnosed boy who I met through a mutual friend. She was struggling with it all, and I recalled that feeling well. I’d like to share it with you (name changed to protect identities etc).

Dear Abby,

We’ve only met once or twice, and we don’t know each other very well, but we know a lot about each other that counts.

When my boy was first diagnosed, I remember feeling completely overwhelmed. I wondered how could I be responsible for giving him what he needs. I didn’t even understand what he needed, much less how to give it to him. Information was sparse from health professionals, and I sat there reading and reading late into each night, and not feeling any better prepared to deal with the road ahead.

I doubted myself, our ability to cope with this and felt scared and swamped by the demands on me. I was physically and emotionally exhausted by the time we reached diagnosis – I had a new baby, I was my son’s kinder aide, I was alone with the kids 12 to 14 hours a day, every day, and both our families were completely and utterly unsupportive.

If I could give my then-self one piece of advice, it is what I give you, now: you are enough as you are. You don’t need to be anyone else. You are everything your child needs. All the skills you will need to give him the life he deserves you will learn slowly, piece by piece.

It is a marathon, not a sprint.

Above all, your boy is still your boy. If you take this piece of him away, he will be someone else entirely, and that would be a tragedy.

Love, hugs, and support.

A journey begins…

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I don’t want to start with an apology. I don’t think that ever sets the right tone, and perhaps lowers expectations. At the same time, I don’t think we should ever over-promise and under-deliver. So I will simply state that this is my first ever attempt at blogging and leave it at that. Make of that what you will.

Why am I doing this? I am doing this because I believe passionately that our children with autism need to be heard. I am advocating not just for my children, and any children they may have in the future, but for all kids who need a voice. And perhaps for myself, too.

Although my personal journey with autism began when I was born, my advocacy began when my son was born and I had someone to protect and nurture. It is difficult to become a parent and have your hopes that your children will not struggle with the same things you struggled dashed utterly. I grieved for the loss of possibilities, the hope that perhaps my children would have an easier path through the social world than I did. At the same time, however, I have to rejoice in having a better understanding of myself and therefore also of my children, and those who are more like us than the neurotypical crowd who seem to find the social world perhaps not effortless, but at least innate and comprehensible.

I grieve when I read posts by parents about their children who are struggling so much with life and school. I firmly believe that parents are trying to do the right thing by their children, making decisions based on the information they are given, their past experiences and what society expects of them. I think as parents we will do anything we can to alleviate our children’s struggles. We often regret our choices, but we need to forgive ourselves for those. We are perfect humans; we are imperfect beings, and we all make imperfect decisions. The important part of the journey is the repair.

My last thought for today is that we need to think hard about our vision for our children – whose vision is it? Is it ours, our children’s, or society’s? Do we need to encourage them to conform, or can we let them be themselves? I firmly believe that our children are happiest when they are accepted for who they are, are allowed to be themselves, and so are given wings to fly.

I hope you enjoy reading my posts 🙂