Home business, home education and health challenges: what makes us tic?

Posts tagged ‘aspergers’

Diagnosis: just another brick in the wall

On Saturday morning we arrived bright and early at Action in Autism for our scheduled screening. We decided to try to be first in line (and succeeded), as we didn’t know what to expect. Last time we were there, the girls were overwhelmed by all the other children, and I thought if our visit was fairly quick we could avoid a lot of stress.

Even the trip was not without its … ahem … intrigues, with us running out of petrol just a few km from our house (and the nearest petrol station!). Thankfully, we managed to time our incident perfectly and found ourselves right outside the door of one of my best friends, who graciously gave us her lawnmower fuel to get us to the petrol station. Ha ha! Life is full of surprises.

We made it to the petrol station! While we were there, to fortify the girls against whatever lay ahead, I bought them sneaky bribery-material (crisps and chocolates!) and then we were on our way once more!

When we arrived at our destination we were, indeed, first in line. It wasn’t long, however, before others began arriving. There was a wealthy couple with fashionably-dressed son who looked about as autistic as our children (so, not very). There was also a whole delegation of children, many of whom appeared to be orphans, from the Deaf and Blind Society of South Africa. What made this group even more interesting was their deaf-and-blind social worked and her adorable guide dog, who kept us all entertained with a series of questions (the social worker) and a lot of tail wagging (the dog).

We finally had our assessment. A paediatric neurologist asked the girls a string of questions, then told us she needs to see us at her practice in KZN Children’s Hospital. And then we left, lollipops in hand.

So we’re really not much closer to having a handle on our family’s challenges. Apparently Goldilocks has an anxiety disorder (as well as everything else), and the neurologist was very interested in the Tourette’s, low muscle tone, cardiac arrhythmia and various other aspects of our lives. She seems to think there’s “something there”, but what that something is we don’t yet know. Maybe next month. We’ll see.

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I am Aspiengirl: the book!

2013 was a year of discovery for us, as we began to acknowledge and quantify what it means in our family to be on the autism spectrum. Now, as you know, we don’t yet have an “official” diagnosis. What we have is pretty much all of the symptoms, and a lot of research. Besides my truly amazing friends and family, who have been so very supportive and encouraging along this journey by helping us to identify each challenge as a unique gift, I have had two partners on the way who don’t even know how great they are, how much they’ve helped, or that we all exist.

First, I have to acknowledge the amazing work being done by Jess at Diary of a Mom. She has helped me immensely, giving me insight and gifting me with patience and enjoyment of what might otherwise have undone me. Despite being on the spectrum as well, Goldilocks and I often have very different experiences of what that term means practically, and we’re both headstrong and stubborn. Diary’s unique perspective, grace and determination have uplifted me, challenged me and enhanced every part of my life with my daughters (and myself!). I feel heard. I feel like my voice matters, and I will spend every ounce of my energy to ensure that my girls know what that feels like – from now! That means, first and foremost, that I must hear them. Diary of a Mom helps me not to lose sight of that, what it means, why it matters, and how to do it.

She also manages to imbue every post with energy, joy, passion, philosophical wisdom and thought-provoking controversy – and all beautifully written, too. Which matters to me. Visit her site here.

Secondly, Tania Ann Marshall is a researcher and psychologist who has specialised in understanding and documenting Aspergers Syndrome in women and girls. Really, her work is how I first truly understood that Goldilocks and I (and probably Red Riding Hood, given recent, vague developments in her life) are on the spectrum and probably have Aspergers. Until now, it has been largely believed that boys are four times more likely to be autistic to some degree than girls. Thanks to the work of Dr Marshall and others like her, this is now being understood differently. Because girls are better at social camouflage and mimicry, and more likely to hide in the shadows rather than act out in trying situations, they often go undiagnosed. They have to (and manage to) navigate this road alone. Dr Marshall attempts to itemise what it means to be a girl or woman with Aspergers, how it affects her life , work and social interactions, and how to get the help she needs.

To my enormous delight, Dr Marshall is writing a book on the subject, I am Aspiengirl, which will be available to purchase in the next few months. You can preorder it here. In the meantime, read her blog here.

The world needs all kinds of minds – Temple Grandin (TED Talk) – watch this!

Please watch this. It’s fascinating. It answers a lot of questions – and unlocks a lot more!

Temple Grandin, diagnosed with autism as a child, talks about how her mind works — sharing her ability to “think in pictures,” which helps her solve problems that neurotypical brains might miss. She makes the case that the world needs people on the autism spectrum: visual thinkers, pattern thinkers, verbal thinkers, and all kinds of smart geeky kids.

Through groundbreaking research and the lens of her own autism, Temple Grandin brings startling insight into two worlds.

I love this:

Temple Grandin: ” … who do you think made the first stone spears? The Asperger guy. And if you were to get rid of all the autism genetics there would be no more Silicon Valley,and the energy crisis would not be solved. “

When in Rome … rising above the rabble

A friend of mine is facing a serious challenge. As a teacher, she loves to engage and challenge the young minds in her class – and she’s good at it. What she’s not good at is admin. It just isn’t her forté. As a result, she is often at loggerheads with the school management. It’s a sad state of affairs, because it impacts her ability to do the part of her job that she’s good at and saps all the joy she has in her work. This as my advice to her, and I found it helpful for me, too.

The thing to do is to rise above it. Don’t let the petty politics get you down, because if there’s a problem, it’s their’s. Unless they specifically ask you to change something, they haven’t shared the problem with you, so it’s not your problem. You can’t be part of the solution if they don’t invite you to, which is their loss if they resent or begrudge something you’ve done (or not done). But don’t take on other people’s problems. You’re not responsible for any other adult.

The truth is that we implicitly condone 100% of the behaviour we tolerate.
By tolerating behaviour, we teach people how to treat us. I think you are doing what you love to a very large extent. Every job has it’s unpleasant bits. Where you are, those unpleasant bits take the form of petty politics and unreasonable admin loads. That’s why it’s so much better to focus on the bits that make you happy, and do the basics everywhere else. Doing the basics is quicker than giving your all in every area. That means you can deliver on others’ timelines. But you simply can’t give your all in every area. You’ll burn out. Admin is much less important than teaching, so give it the focus it deserves and quickly get it out of the way, so that you can focus where your talent and passion really lie.

If you let the system get you down, no one wins. Not you; not the kids; not even the people running the system. But the kids do lose, and perhaps you will, too.

What works for me
I now give about two days a month to admin, plus about half an hour a day. Then I split my time: half for paying work (in your case that’d be the actual teaching), a quarter for our own marketing (that’d be your painting) and a quarter for research and brainstorming. That works really well. That way, I deliver my admin and billable work on time, but I also feed my mind and develop my business.

Feeling somewhat alien
Sometimes, it’s virtually impossible to even begin to understand what drives another person to behave the way they do. I remember what it was like as a kid: having to learn how to be like other people. How to think, speak and behave in a way that came naturally to everyone else (or so it seemed) yet was incomprehensible to me, and could only – at best – be mimicked. It’s a full-time and exhausting job, and I can see her going through the same process.

We want to have it “all together”, as those around us seem to do.

I think we tend to assume everyone else is fine and coping all the time, when the truth is that no one is. Everyone, at some stage, accepts the current state as a baseline and chooses to move forward as calmly and effectively as possible.We exhaust and deplete ourselves by trying to be as perfect and together as everyone else is, instead of accepting that we’re not, and neither are they. When we accept that truth, make allowances, and live within it as best we can, we begin to achieve true greatness.

It’s a greatness of spirit rather than of accomplishment. 

When others don’t understand our thoughts, actions and motivations, that’s okay. It helps to think of it as a disability: not being able to understand is a disability. They can have our sympathy but not our resentment. And in fact, it’s their world. We’re the visitors, so the onus is on us to get by, to make ourselves understood. When in Rome …

Romans 15:4  “For whatsoever things were written aforetime were written for our learning, that we through patience and comfort of the scriptures might have hope.”

– By Vanessa Davies – daily discovering Joy on a Shoestring.

What would you have said? I’d love to hear from you.

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