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

Posts tagged ‘tourette’s syndrome’

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!

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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.

Questions people ask us about Tourette’s Syndrome

The number one question people ask us about Tourette’s Syndrome is why we think we’ve got it. More specifically, why do think Goldilocks and I have Tourette’s Syndrome, and why do I watch Red Riding Hood like a hawk for the first sign of symptoms? That’s about three questions, so let’s break it down.

While I always knew that I twitched a little, when I was anxious, and sometimes made strange sounds, because no one ever commented on it, I assumed that I’d adequately masked it, and that no one else knew. I put it out of my mind to such an extent that I hardly knew, consciously, that I was doing it. That changed not long after I got married. I was just about 19 years old, eating dinner with my husband at my sister-in-law’s house. She and her husband had prepared a delicious pasta dish with broccoli, bacon and white sauce. By the end of the evening, my face was an animated playing field for every thought and emotion. My sister-in-law asked me about the twitching, and I realised my secret was out. Later, I found that my friends and family had always seen (and even heard) my tics. They’d been kind, and polite, and eventually they’d stopped noticing, as I had.

I never forgot about my tics again, but they still had no power over me. It was a simple part of who I was, and had virtually no impact on my daily life.

With each pregnancy, the tics got worse. After Goldilocks was born, the tic notched up a couple of levels, then plateaued. The only minor anxiety I had was when I noticed little Goldilocks mimicking my tics. But she seemed to outgrow that.

When Red Riding Hood was born, my tics got dramatically worse. Sometimes, for hours, my brow would be creased, my cheeks puffing out. I felt like I couldn’t control my face or hide my tics any more, and I became something of a recluse. After a number of years the tics subsided slightly, but the furrows on my forehead and around my mouth are here to stay.

I began to suspect.

When we were investigating Goldilocks’ poor performance at school I kept coming across the words: Tourette’s Syndrome. It seemed to fit with so many of her symptoms and traits. She didn’t have specific tics at that stage (tics usually only begin to manifest around age 8, and can take up to age 18 to  become apparent). What really concerned me, in the absence of a clear Tourette’s diagnosis, was the fact that Ritalin is known to exacerbate Tourette’s Syndrome and tic disorders (and interesting how many children with ADD also have Tourette’s and vice versa).

The story of Goldilocks’ ADD adventure is the subject of another post, but the Ritalin she took made her tics much worse. Within a year, it was clear: she had a tic disorder. I looked it up online and found that Tourette’s Syndrome is characterised by vocal and motor tics. Apparently you need at least two of one and one of the other for it to be Tourette’s. When I asked the paediatrician who prescribed the Ritalin whether he thought she had Tourette’s, he shrugged offhandedly and said, “Of course – like you,” and left it that.

Some time later a GP gave a similar, off-hand response. Sort of, “isn’t it obvious?” Well, no, it wasn’t obvious. Most people think that because none of us could possibly have something “as serious” as Tourette’s since, so far, we haven’t gone around blurting out profanities (echolalia is the official word for that). That, however, is an extreme symptom of an otherwise fairly benign condition.

In short: we think we have Tourette’s Syndrome because we do. It’s that simple.

Ironing out the kinks: growing a small business, dealing with health challenges, and making home school work.

juggling life's priorities is a full time job

Juggling life’s priorities is a full time job.

Wow, two and a half months since I posted anything on here. I’d planned to post something every single day this year – or, at the very least, a few things a week. Ah well, the best laid plans of mice and men and moms, I suppose …

Life has been busy.

My time has been split along three clear lines this year. Number one has been establishing my business. Now, I know that as a home schooling mom, that perhaps reflects poor priorities on my part. However, as the breadwinner in our family, I really don’t have a choice. It’s pretty simple: I don’t work, we don’t eat. And if I don’t have an effective, successful and efficient business, with a team of busy staff, then we’ve got nothing. So, some days the girls just get along with their education as best they can while I work out the kinks of a growing agency.

Number two has been figuring out our various health issues. Goldilocks’ Tourette’s Syndrome has been wreaking havoc with her ability to speak recently, and the effect on her confidence has been marked. She’s a deeply empathetic child, and has been battling more and more with bouts of what she refers to as being “down in the dumps”. Little Red Riding Hood has her fair share of challenges, which will form the subject of other posts. Suffice it to say that she’s needed a lot of attention recently. And of course, my dear old body just isn’t playing along. I really need a strong body, able to lift heavy weights and meet challenging deadlines. I need to be able to go for days at a stretch without paying too much attention to the every last gram of poison on my plate. Unfortunately, I have no such thing. Aside from digestive concerns, which sound petty but can be debilitating some days, my back decided to fight back against the chronic abuse inflicted on it by years of poor posture. The result was two days of excruciating agony in which I could hardly walk. Thank God for physiotherapists (and the means to afford one!). On top of it all, my skin has only once looked worse than it has these past few months. This makes client visits a real challenge, despite the fact that these form the basis of my business. (I may have a solution at last, though. More on that to follow).

Finally, I’m working out the kinks in home education. Really, the main problem is that Ambleside just seems too easy. We read stories, draw pictures, watch opera, dance to medieval music, and race through easy maths (involving multiplying Roman numerals!). We sew fluffy pink horses, draw butterflies and newborn hamsters, and circumnavigate the globe using Google Earth. And we fastidiously and meticulously neglect to complete a single timeline of any kind. It seems to go too fast, yet too slow. Each day’s school work takes around 3-5 hours, which is a tricky amount of time to budget accurately. For now, I’m focusing on giving the system a chance to take effect. Next week is exam week, which promises to be very revealing.

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