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

Posts tagged ‘Tourette Syndrome’

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. “

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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.

WAR!

As we read more and more about Tourette’s treatment alternatives (in other words, anything that doesn’t involve drugs) I am astonished at how blasè I’ve been about health warnings in the past. So many times I’ve been sent an email, read an article or heard a talk on the dangers of some very common aspects of our modern lives, and instead of taking action I’ve just fobbed it off as more fear-mongering. Like I need to be more paranoid. Thanks a lot.

However, I’m becoming more and more convinced that this has been nothing short of head-in-the-sand denial at best, dangerous-with-death at the far end. A bit melodramatic? Fair enough, but I really have underestimated the effects of our environment and diet on our health. (Diet less so, what with us being gluten- and dairy-free ‘n all).

Chemical Warfare

Let me give you an example. Goldilocks has frightfully unruly hair. It’s essentially a combination between a weaver’s nest and an owl pellet. A very beautiful, golden combination, sure. But no less daunting to tame, and never, ever neat. Since Aunty Em and I share very similar characteristics in our own hair, I’d pretty much given up any illusions of any of us ever having the long, tame, tumbling tawny tresses Red Riding Hood twirls around in every day. No worries, we’re quirky. In fact, to quote Goldilocks, “Weird is just a side effect of being awesome!”

However, my research has led me to conclude that chemicals in the home can trigger and/or aggravate Tourette’s symptoms. Time to be brutal. So we turfed all our smelly stuff – perfumes, after shaves, deodorants, shampoo, conditioner – all gone! (Not laundry detergents and household cleaners since those were already safe, eco-friendly and organic). Of course, being me I had first researched the available alternatives and I found a wealth of information at The Simple Dollar and DIYNatural. Check it out! On the last night of “toxic cleaning” as I’ve started thinking about it, I washed the girls’ hair myself. I watched in amazement as Goldilocks’ face contorted with a range of facial tics and she made her entire repertoire of vocal tics while the shampoo was near her face. Similar (although milder) reaction to the conditioner. Fascinating!

Two days later it was time to try the experimental concoctions I’d been using on myself for a few days. Here are the results:

  • No increase in tics whatsoever;
  • Hair smells clean;
  • At least 40% fewer tangles;
  • Hair is shiny and beautiful when dry.

Her hair stayed pretty controlled until the next wash, and then the cycle repeated. Her tics in general have been decreasing since we’ve de-chemical-ised the house, and this is another step on the ladder to a Permanent Solution.

You are what you eat

We’re on day 52 of the Specific Carbohydrate Diet (SCD) and we continue to see the benefits. Concentration improves steadily; my skin is a lot better; digestion is much better, with the girls having a bowel movement roughly once every three days (which is better than once every 8-10 days!). Our tics seem to be improving, and Papa Bear now sees a clear link between his tics and SCD-illegal foods.

We’ve also re-introduced Omega 3s to our SCD programme, and the effect of those on both Goldilocks’ tics and mine was noticeable. We both had a tangible sense of our faces having a little peace.

The WAR is on: Operation Desert Storm(ish)

So, in recent weeks I’ve posted about the importance of starting small when sorting out the house, and doing just fifteen focused minutes a day. Yeah. So that didn’t work. I’m not great at just doing a little bit of housework at time. I’m more of an all-or-nothing kinda gal. As a result, when Aunty Em came over to help on Sunday, we didn’t just do fifteen minutes. We did the entire office – rearranged from top-to-bottom, and cleaned! Three hours later we were ready to head out for evening Church, feeling rather righteous indeed!

The next day the “Zeigarnik Effect” described this week by Jordan and Steve kicked in, and I was compelled to keep going. It is now four days since starting, and I’m nearly done. Almost every surface has been swept, washed and dusted. I have treated for mould everywhere and we are dust-free. Our tics are definitely improving, although I will say that the mould and dust we’ve raised has caused me a serious allergic reaction which bears a strong resemblance to a common cold. Grr. But obviously there’s an issue here and we need to be vigilant and disciplined about maintaining a mould-free, dust-free zone.

Wish me luck!

Round up of the month’s funnies

Spring is SPRUNG (can you believe it’s here already?), so I thought I’d start the month with the highlights from August.

Raindrops keep falling on my head

One afternoon this week, when a howling Berg Wind was making life decidedly tropical, the girls begged to be allowed to play in the garden with a water hose. We relented right away, with the proviso that at least some of the wilting plants should be watered at the same time. I was supposed to be working (on a Saturday, no less!), but the sound of splashing water and laughing angels was too much to resist and I had no choice but to join them. While we were running through the improvised “rain”, making rainbows (science lesson: check), and generally having a grand old time, young Red Riding Hood called out, “Sissy, if you pour that water on my face it will be totally uninappropriate!”

Don’t exhaust your primary means of transport

The day before that, on a trip to our local supermarket, Red Riding Hood decided to run ahead of us with a shout of, “Beat you there!”. Strolling casually along next to me, Goldilocks remarked, “Don’t run, Sissy. You’ll wear out your legs!”

Hark the – wait, who?

We were talking about the role of angels in heavenly warfare this week. (Yes, I know). It was an interesting discussion started by the curious young princesses, and if I recall correctly it was inspired by the day’s Bible reading. I’m not sure. They do, after all, ask the darnedest questions. I think we were talking about an Angel of the Lord appearing to one of the patriarchs, when Miss Goldilocks said, “Which angel do you mean? Like, Nigel or something?” Who?

Tics and fleas

This may be obvious to all you aural learners out there, but I must admit that, with my visual approach (I  see the words in my head as they’re said) I missed the connection completely. With our journey into Tourette Syndrome, we’ve been encouraging both girls to be open and honest about the condition. If someone asks, they explain that some of us have Tourette’s, a condition that gives us unusual tics and sometimes makes us make strange sounds.

I had told the moms of their BFFs so that they could explain in more detail to their daughters, but on a recent play date Goldilocks decided to explain it further to her BFF, who we’ll call Snow White. Snow White exclaimed in a wave of understanding, “Oh! TICs! My mom explained it to me but I thought she said you had FLEAS!”

I was tickled pink.

Heavenbound

At After Care the girls insisted on building a house underneath the wendy house that’s there already, since this last is built on stilts. Irresistible. When the teacher on duty asked what would happen if the house collapsed on top of them, Goldilocks shrugged and said, “ah well. Closer to heaven.”

The price of success

Goldilocks mission in life is to find and climb the highest tree she can. At After Care she always clambers up the palm tree, trying to get ever nearer to the top. This week she made good progress, and was proudly telling me all about it when I fetched her. She told me: “I got pretty high this time, which was a great achievement. But as we know, with every success comes sacrifice,” and she proceeded to show me her ankled, which had a small, bleeding graze.

So solemn.

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