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

Posts tagged ‘Autism’

It’s Official

So.

My girls are autistic.

“High Functioning Asperger’s Syndrome with generalised anxiety disorder, precociously advanced speech and low muscle tone. And significant IQ.”

Obvs.

Is it wrong that I’m proud? And vindicated?

And just a little in my cups?

#TwoHoursSleep? Probably not THAT smart …

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Some days

Some days are bright rays of sunshine.

Some days are full of joy and sparkles.

Some days include movies – in the cinema – and bacon nachos and chocolate cupcakes and sleep overs with BFFs.

Some days, baby girls turn NINE YEARS OLD and wrap the universe around their little diva fingers and spread happiness with every batted eyelash.

Some days spill over into others like too much honey and infect whole weekends with their sweet, warm, indolent light.

Some days are less so.

Some days, brilliant minds are overwhelmed by too much of everything.

Too many ideas.

Too many options.

Too much to do.

Too much lack.

Those days are hard.

It seems like the brief melt down, substantial as ash (and as black) has swallowed up the mellifluous days of celebration that went before and left only cold emptiness in its wake.

Some days, we are so blessed. We have so much.

Some days, it is too much.

 

Autism Spectrum on a Shoestring

The point of Joy on a Shoestring is to focus on being joyful even when the budget is tight. It’s my own personal motivation to keep a good attitude even when things are hard (or harder than I’d like them to be, anyway).

If you’ve read more than a couple of my posts, you’ll know I’m not particularly good at this.

I’d like to be. I’d like to be counting my blessings and focusing on the good stuff.

But I don’t always get it right.

And that’s okay.

Part of the journey is being authentic, and it wouldn’t be much of a record, or much of a journal, if I didn’t also record some of the hard stuff, and some of my honest reactions to that hard stuff, instead of being all ra, ra, jolly hockey sticks all the time.

Not too long ago I wrote about how it really is possible to eat paleo on a shoestring budget, and I’ve also reported in the past on the wonderful results paleo or SCD/grain-free living has delivered for our family.

The thing is, bread is cheap. Popcorn is an affordable snack. And rice really does make a meal go further. I wish that wasn’t the case. But there comes a time in the life of every cash-strapped paleo family, I am sure, where the thought of another green apple, or one more slice of roast butternut, just doesn’t fill the heart with the same kind of joy that a fresh, hot slice of buttered toast doesn’t. And even though I honestly oppose the practice of using food for comfort, I also know that nothing warms the cockles of one’s heart like a home-made rusk dunked into yet another cup of coffee. With sugar. And milk.

Sometimes, it just goes like that.

It’s been going like that in our house for a couple of months.

I still get migraines and digestive issues and rashes and breathing difficulties when I eat wheat, so I don’t eat it. But everyone else has a less dramatic reaction, and it takes months to manifest.

It’s manifesting now.

Red Riding Hood has a chesty cough that hasn’t budged in about two weeks. She’s battling with sinus, growing pains, nightmares, grumpiness and bloating.

And Goldilocks? Well, it’s definitely not making things easier. Her tics are off the charts – for her, at least. We’re not in any kind of Tourette’s Syndrome support group, so I don’t know what other people are facing, but Goldilocks is battling more vocal tics than she’s ever had before. She has a tic that forces her to swallow, one that makes her breathe hard, a teeth clenching tic (I have that too, at the moment), a yawning tic, and tonight she started a violent head nodding tic that is really going to make social interactions a trial for her if we can’t take care of it. She has an intermittent windmill-type tic, as well. She has to wave her arms (one or both) like a windmill, and it looks rather uncomfortable. It’s also not as easy to disguise as some of her other tics.

Furthermore, Goldilocks’ ADD is a serious challenge for us both at the moment. I realise that stress and an erratic approach to healthy eating are not doing my patience any favours, but even when I step back and assess the situation objectively, there’s no denying that her ability to focus is at an all-time low. I don’t think I’ve ever seen her like this before. She can’t sit still to any degree. She can’t keep track of conversations. We all love playing boardgames, and usually she’s streaking ahead in the game, but not now. She can barely keep track of what’s going on from one moment to the next.

Both girls are also displaying unusually high levels of anxiety. Now, I know what you’re thinking: they’re picking up on our stress. Okay, perhaps you’re right. Even though we go out of our way to shield them from most of it, they are wise, perceptive, sensitive children and we’re not that good at hiding our emotions.

But the thing is, we kind of are. When we talk about our lives and our family, they consistently report happiness, contentment and joy. They describe how grateful they are for how bountiful our lives are. They’re happy with life.

Their anxiety focuses on bigger issues: the economy; the government; the after life. Big issues that are way outside of any of our control. It could be a sublimation of what they feel at a grass roots level, but it could just as easily be the kind of sweeping paranoia that comes from eating bread – in our family, at any rate.

There can be no doubt that, at least for Goldilocks and Red Riding Hood, a grain-free diet is the only hope of a life that resembles “normal”. I am not calling it a cure, or even a solution for anyone else in a similar situation. I’m just saying our family needs to be paleo. I need to get us back to that.

Have you found similar results with paleo in your family? Or do you have a different solution/coping mechanism for your challenges? I’d love to hear about it. Please leave a comment in the box below and let’s chat about what works!

When things don’t go according to plan

Yesterday, I was lucky enough to stumble across this post on Proverbs31.org, talking about being a bad mama, and how we judge ourselves so harshly for what really is, at the heart of it, a universal condition.

In the related resources section there’s a link to a book titled, “I need some help here: when things don’t go according to plan”.

It resonated with me this week.

Just two days ago I was doing a quick life review, and smiling wryly to myself about the “old days”, back when we thought Cystic Fibrosis was the only glitch on our radar, and everything else would be plain sailing if we could avoid that obstacle.

Thank God, we did.

I am grateful every single day that the spectre of CF doesn’t loom large over our lives, and every time either of the girls runs the slightest fever, battles to take a breath, is constipated for more than a day or a kiss on a sweaty forehead leaves a trace of salt on my lips, my blood pressure rises, my heart races, and in seconds flat I’m back in the darkness of that “worst case”. And as I talk myself down from the edge of the cliff and remind myself we’re not riding the thermals above that particular abyss, a fresh wave of gratitude washes over me and I am so very thankful for the health challenges we don’t face.

But things have not gone according to plan.

I look back and laugh at the young and innocent me, with her high hopes and crazy ideals. At what I thought would be my life. That audacious young woman for whom no task was too hard. That lady who was part of a team, a partnership against the trials of this world, characterised by open, honest communication and bucket-loads of laughter. That disciplined adult who saved and invested and lived within her means, always providing for her family’s needs. That tiger mama with her bold cubs and their infinite resourcefulness. Those irrepressible learners I knew I’d breed, who loved reading and maths and acquiring knowledge, and who could instinctively see how all the bits fit together and why it matters.

Sometimes I miss that silly, bright-eyed girl.

(In fact, to my surprise, I saw her again the other  day. I glanced into her eyes and couldn’t place her at all. She was in the mirror, grinning at me with a kind mischief all over her wrinkle-free face. I have no idea how she got there, and it took me a few minutes to remember who she was).

But mostly, I’m too busy with the task at hand to think much about the fun I thought I’d be having. When we imagined CF in our future, we had no compassion for challenged learners. ADD didn’t frighten me. I knew my kids would never have it, and if they did I’d be ready to guide them through it. Dyslexia? Nah. Autism spectrum? No chance. Our problems were potentially much bigger, I reasoned. Or non-existent. There was no middle ground.

I guess motherhood is a great leveller and a teacher of compassion and perspective. And for that, I am grateful.

I now know how even a mild sniffle, if it arrives on the wrong day, can be a burden you hardly feel able to bear. I also know that, surprisingly, you can bear it. It’s possible to survive and even thrive in the midst of the trails – maybe even because of them.

Yes, definitely because of them.

Those hard times that we all face (and we all do) lend an ethereal beauty to even the most mundane aspects of every day, and make our lives precious and beautiful things indeed.

I am so infinitely grateful.

 

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.

A little more on empathy

Yesterday I wrote about why understanding that having empathy and expressing empathy can be two different things. I just need to share this important quote from (yes, you guessed it) a Diary of a Mom on this subject:

In an interview with John Scott Holman for Wrong Planet, the Markrams described IWT as follows: The Intense World Theory states that autism is the consequence of a supercharged brain that makes the world painfully intense and that the symptoms are largely because autistics are forced to develop strategies to actively avoid the intensity and pain. Autistics see, hear, feel, think, and remember too much, too deep, and process information too completely. The theory predicts that the autistic child is retreating into a controllable and predictable bubble to protect themselves from the intensity and pain. The theory originated from neuroscientific discoveries on an animal model of autism and was extended by accounting for previous research on autism in humans. It is a unifying theory because it takes into account and explains the many different results and interpretations from a spectrum of studies on autism.

Again, I really encourage you to go and read the whole post. It matters.

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.

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