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

Posts tagged ‘tourette syndrome’

Parenting “on the spectrum” – part 1

What “the spectrum” means

When my brother was about eight or nine years old, he was diagnosed with attention deficit hyperactivity disorder, or ADHD. We were not surprised. He’d been impulsive and extremely “busy” since he was born. But the diagnosis gave us nothing more than a label for what we already knew to be true. Oh – and some personality-draining pills. In an effort to appease his teachers, my brother took his pills faithfully for some time. However, the effect they had on his emotions, personality and creativity were too great, and finally he and my parents called time on the drugs, choosing instead a series of expulsions as he wended his way through academia. Needless to say, despite an incredible IQ and masses of “potential”, he barely scraped through high school. And he hated it. As I watched, I vowed to avoid the same scenario for my children.

A tentative diagnosis

At first, we didn’t realise that we had any “special needs” in our family. Both girls are beautiful, bright and healthy. They excel at anything they set their formidable minds to. But that’s just the thing. They don’t set their minds to everything. Goldilocks, in particular, can be very focused and effective working on activities that interest her. But if an activity doesn’t engage her,  getting her to participate in it is no straight forward affair. You’d have more success milking a male mountain lion. Her teachers noticed that “something was up” before we did. What we identified as Goldilocks’ unique awesomeness, they identified as a learning disability. We were sent to speech therapists, occupational therapists, educational psychologists and paediatricians. In the end, the “experts” diplomatically told us that we were both right. Yes, she’s highly gifted. Yes, she has ADD. Here are some pills. Have fun. I fought tooth and nail against the party line for years. I refused to give my child Ritalin until the teachers refused to teach her if I didn’t. Even then, I took my laundry list of concerns into the doctor’s office with me.

  • What if her personality changed?
  • What if she lost her specialness?
  • What if her tics got worse?
  • What if? What if? What if?

My fears were well-grounded, and all of them turned out to be completely valid. Having read the material obsessively, I knew the side effects of that little white Teachers’ Aid. I have had tics all my life, and while I could easily dismiss my own (aren’t I a grown adult, after all?), I certainly didn’t wish the same on my child. She had enough on her plate as it was. The pill took effect devastatingly fast. School was no longer challenging in any way, and the teachers were delighted at the turn around. Poor little Goldilocks, however, lost her spark. She became withdrawn and depressed. She lost her appetite and a noticeable amount of weight. She began to express the wish that she’d never been born. It was then, when I identified suicidal ideation in my eight-year-old, that I stopped the treatment. We removed gluten from her diet and started her on a strong course of excellent Omega 3s. The teachers didn’t notice, and within a few months I began to see a glimmer of my little girl starting to resurface. The tics, however, got progressively worse. The paediatrician and a GP both flippantly acknowledged, “Oh yes, that’s Tourette’s”, and offered no further assistance of any kind.

No matter.

I trusted them not one jot and set off to find solutions myself. First things first, we investigated the link between migraines (which both Goldilocks and I are victim to), epilepsy (which my mom had in her childhood), ADD and Tourette’s Syndrome. That research led us to the link between these conditions and both Aspergers and Autism. Even then, I was reluctant to accept any labels. For one thing, I didn’t want my daughter in a “box”, so to speak. And for another thing, it seemed a little like Munchausen Syndrome by Proxy as I kept digging into what afflicted my little girl, trying to identify it. My research (and some good friends) led me to the blog of Tania Ann Marshall, a research pioneer on autism in women. Here I found lists of symptoms describing what Autism is and how it presents in girls. Because girls are not like boys, and their syndrome experiences are different, as well. I watched videos by thought leaders and research pioneers on the subject.

Symptoms of Aspergers in Girls and Women

Autism Spectrum Disorders | Image from http://www.autismdailynewscast.com

Autism Spectrum Disorders | Image from http://www.autismdailynewscast.com

Today I’ll end here, with a list of symptoms that all match my Goldilocks. Next time, I’ll go into some coping strategies for helping your autism-spectrum child be the best they can possibly be.

This list is taken from Tania Ann Marshall’s website, where she explains:

This profile was created for females who are self-diagnosing or considering formal diagnosis and to assist mental health professionals in recognizing Asperger Syndrome in adult females.

  1. Cognitive/Intellectual Abilities – girls with Aspergers tend to have above-average intelligence.
  2. Education/University Life – girls with Aspergers tend to have eratic performance at university and higher education institutions. Despite high marks, they have a tendency not to complete their studies.
  3. Career/Work – these girls are very often drawn to careers in the arts (writing, painting/drawing, acting or music) or careers working with animals. They tend to work to become experts in their chosen fields, thanks to their obsessive focus on things that interest them. Social interactions tend to be fraught.
  4. Social and friendships/relationship– “Aspien Girls” tend to battle to understand social interaction, and use “social echolalia” (copying the interactions of others) to mimic social graces.
  5. Communication  – she can find it difficult to express herself, especially under stress. Usually writing her feelings down makes it easier for her to be clear and calm.
  6. Physiology/Neurology – a woman or girl with Aspergers will tend to be highly sensitive emotionally. She will be easily upset if her environment is disturbing (too loud, messy, bright, dull etc). She may need to withdraw at times to recharge. She may have OCD, ADD or Irlen Syndrome, and may grind her teeth. She will probably battle with being organised, and is highly inclined to have wheat, gluten, grain, dairy and casein allergies. She may have tics.
  7. Physical Appearance – her dress sense will be unique. She is either very unlikely to conform to social norms, or ultra-conformative to the point of obsession. There is also anecdotal evidence of a link between girls with Aspergers and anorexia.
  8. Lifestyle  the Aspergers girl seeks peace. She prefers not to work with other adults, selecting children, books, computers, or nature instead. She tends to be obsessive about her area of interest. She requires routine and works hard to “automate” tasks to simplify her life.
  9. Relationship Choices/Sexuality/Gender – girls with Aspergers tend to date much older men, or to adopt a same-sex orientation.

There are more on the list but they are covered for the most part by topics mentioned here.


References

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.

Getting our act together

The more we learn about possible alternative therapies for Tourette Syndrome in the incredibly informative book Natural Treatments for Tics and Tourette’s, the more we learn about life in general. I am ashamed to say that until now I really haven’t been that committed to ensuring that my family gets organic, non-pesticided food. And even though we have been blessed through GNLD to have a range of home care products that contain only eco-friendly and human-safe products, that was almost a lucky accident rather than a specific design.

However, this book is an adventure and I am learning a lot. I’ve been amazed at how perfectly the recommended diet challenges for identifying and eliminating Tourette’s triggers tie in with the Specific Carbohydrate Diet (SCD), so that I don’t have to double up on that process. God is so good, and so perfect in His inconceivable timing.

Another important part of trying to identify, manage and eliminate triggers is an environmental investigation: testing and eliminating triggers in the form of dust, chemicals, mould, solvents and so forth. We’ve switched to pure glycerine soap, home-made shampoo and conditioner (which I will review after I’ve had more time to experiment), and the world’s most amazing Olive Base Cream from Windrose. Oooohhhhh …. heavenly. I must admit that I have been surprised and pleased to see a mild reduction in my own tics, and also those of my family. Of course that may have something to do with having reintroduced Omega 3’s today, as we are at that stage of our diet journey and ready to challenge. So far? Excellent results. Noticeably reduced tics.

The Organized Heart

A heart for God is a heart in order.

An important part of this environmental elimination plan is to sort out our home. We periodically do what I refer to as a Major Cleanup. (Sometimes I even salute). When we do, we throw out  a LOT of junk, and I think the time might be upon us to do the same again. This time, however, we have to declare war on dust, mould and clutter. Interestingly, just today I have received a slew of emails, articles and blog posts centering on being organised and getting organised – all without me actually opening a search engine! The most recent one was one of my favourites, and prompted this post.

Domestic Kingdom is a wonderful blog that I often head back to for practical advice and support. Today the blog announced a big GIVEAWAY, and I am so excited about the prize. It’s an e-book called The Organized Heart and I hope-hope-hope I win! I could totally use that book, and the timing is too amazing for words. So head on over to the site and add a comment to enter the draw for yourself. But if you win, you gotta send it to me! 😀

Happy tidying.

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