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

Posts tagged ‘diagnosis’

Diagnosis: here we come

Tomorrow is the day. We’re seeing a diagnostician to find out whether or not any of us has Asperger’s Syndrome. We’ll know, one way or another. We’ll know more than we do now, at any rate.

Here goes nothing!

Today is the tomorrow you worried about yesterday

Today is the tomorrow you worried about yesterday.

Taking a step towards diagnosis

aspie=awesomeI’m sure you’ve noticed a recent (subtle) focus autism spectrum conditions and how they affect individuals in the real world. The reason for the focus is that we’ve begun to suspect that most of us in our family are on the autism spectrum. Goldilocks and I, in particular, show marked Asperger’s Syndrome traits.

I’ve been researching the traits and challenges of autistic individuals for the last 4 – 5 years, and this research has given me a tool set that I can use in dealing with the girls in the most effective ways possible. It has also highlighted the coping mechanisms I’ve developed personally since childhood, in order to “blend” into what people think of as “normal”. The great thing about these coping mechanisms is that I can share them with Goldilocks and Red Riding Hood. When they face challenges that neurotypical individuals do not, I have a whole treasure chest of resources available to equip them to deal with just how confusing life can be.

An added (and unexpected) bonus is that I feel more free to be me. I no longer feel the need to conform to certain incomprehensible social mores. Or, if I do, I understand why I do, and am better equipped to do so successfully. This is turning out to be the case with my darling girls, as well. And I find that when we work through our home education programme, if I approach them with my “Aspie Goggles” on, my expectations are moderated and their responses and progress makes more sense.

In other words, this particular label suits our family. It helps us. There’s just one problem: officially, the label doesn’t apply to us. Not yet, anyway. Never one to take a doctor’s word for a final diagnosis, I decided to do comprehensive research and
beta testing” before I made it official. And I have. I am ready for the challenges and all that remains is a medical diagnosis. Even that is not a necessity, but it does make it easier to explain things to people. For instance, I’d love a band-aid to apply to social circumstances when the girls won’t engage, make eye contact, or give an acquaintance a hug or kiss. I’ve never forced them to do those things, and they’re not being rude when they refuse to do them. But it would be easier to have an “official” reason why when we’re dealing with others. A diagnosis also gives us access to support groups, places where we can safely ask our questions and share our experiences. Without an official label, we’re just interlopers feeding off the challenges of others.

This week we took a huge step forward. Based on the recommendation of friends of mine in the autistic community, we spent part of Friday morning with Action in Autism to begin to clarify my suspicions. The results are positive: the counsellor I spoke to agrees with my assessment, and has made an appointment for us to see a diagnostician early in April. We’re one step closer to having an official name for our super powers. Huzzah!

I stumbled across this video this morning, and the young lady presenting it eloquently describes just what it is that makes Asperger’s syndrome, and being an aspie, so awesome. Her words certainly mirror our experiences, so I hope you’ll watch it and find out a little more about what makes us tick.

Parenting “on the spectrum” – part 2

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

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

In my last post I explained a little bit about what it’s like to live with a child on the autism spectrum, and how we identified that Goldilocks is such a child. Essentially, she has both Tourette’s and ADD, both autism-spectrum disorders. She also shows all the signs of high-functioning Aspergers as it presents in women and girls. So, without spending thousands of rands and dozens of hours on tests with the simple goal of acquiring a label for what we already know by plain observation, I’ve taken a different approach. I am harnessing the power of research, the internet, and maternal intuition to treat hat we’re presented with as best I can.

It is a work in progress. Every day present unique, unforeseen challenges, and I am sure I will never master the full scope of what it means to parent an “Aspie” with any degree of excellence. However, I can share what’s working for us right now, in the hope that it will help someone else.

Nine ways to help your Aspien Girl

  1. Identify her learning style

    We have spent a lot of time understanding just how Goldilocks processes the world. She is very musical, and even more kinesthetic. Ideally, I should be giving her hours of dance classes and free dance time, too. I am working on finding ways to share information with her that involve her whole body, and that use music. (Any suggestions are most welcome).

  2. Identify her triggers – food & environment

    Goldilocks can’t tolerate nuts, sugar, casein, lactose, wheat, gluten, grains, artificial colourants or flavourants, and any processed foods. Any of these, even in tiny doses, trigger asthma, tics, ADD and OCD. She becomes irrational, defiant and paranoid. She can’t control her body, her words or sounds, or her emotions. She is very likely to punch or kick others, break things, scream at people, flail around with her arms, forget things, shout, stamp her feet, be cheeky, be cruel in her words and actions, cry, make strange sounds and try to hide in small spaces. When she has not had any of these trigger foods, she is the easiest child in the world. She is pleasant, helpful, thoughtful, polite, kind and mature. She works fast and accurately in her school work and is artistic, creative and placid.

    Too much noise, heat or light, or noises that irritate; too much physical touch, or being forced into activities she can”t tolerate, trigger very similar reactions. While a certain amount of self-discipline is a valuable skill that she must acquire, forcing too much of it is a recipe for a melt down of epic proportions. It also results in what she calls a “tic bomb” at night, where she lies in bed making all the tics that currently form part of her repertoire, all at once, sometimes for hours on end.

  3. Make her feel safe

    This is key. At the tender age of eleven, with puberty looming large and what the scientific literature promises to be the very worst of her reactions to everything, Goldilocks finds it difficult, at times, to cope. My job is to let her know that it is okay to have “quiet times”, where she is undisturbed. It is okay for her to want and even need those times. It is okay for her to tic. It is okay for her to “cheat” in what she eats, and I will help her work through the consequences. It is safe to tell people about her challenges, and fine if she chooses not to do so. It is okay for her to go outside during Sunday School if the sheer weight of effort involved in socialising with so many people all at once is more than she can bear, and she devolves into one of her “tic bombs”.

  4. Make her feel understood

    As an extension of point 3, I need to make sure Goldilocks realises that I understand. In fact, I share (or have shared) some of these challenges, But even if that weren’t the case, I need to know as much as possible about what she faces. I need to do my homework. I need to invest time and energy into finding out what makes her “tic”, so to speak. Then I need to communicate that information to her, so that she knows she’s okay. And I have a duty to make sure that anyone else involved in her care in any way is aware of her special needs as well.

  5. Protect her from naysayers

    Sometimes, people just don’t get it. No matter how carefully I try to explain it all, or how much scientific backing I provide, they refuse to understand. They maintain that firm discipline will resolve the issue. Or they expect things she can’t hope to deliver. In those cases, I need to step in and run interference. I will always believe that education is the solution to our problems, and start these conversations with yet another attempt to educate the other person, to give them the tools they need to understand my unique little genius. And if they still stubbornly refuse to be nice, we gracefully exit the situation. We don’t actually have to put up with unpleasantness, and it’s my job, as her mom, to protect her from it wherever I can.

  6. Balance that protection with resilience-building determination

    Having said that, sometimes a little resilience goes a long way. I will protect my daughter, but I will also teach her to stand up for herself. I will protect my daughter, but not at the expense of a valuable life lesson: sometimes people are mean. Sometimes, people are hurting, and they lash out. We need to respond in kindness, gentleness and love. We need to be nice, even if others aren’t. This lesson breaks my heart a little bit, but it is vital, and I won’t shirk my duty.

  7. Don’t expect too much

    Goldilocks is gifted. Sometimes things come naturally to her. Often, she’ll look at a Math problem and it seems to solve itself in her head. She can read pages of old english fluently and with understanding. Science is as easy to her as eating chocolate is to me. And some days none of this is true. Some days, adding one to five is well beyond the scope of her abilities (just last week, in fact). On those days, I want to give up. My frustration is palpable, and she feels my disappointment like a living thing. A venomous snake, biting her, belittling her. Destroying her. I am ridiculous to expect to much on those days. I should revel in the good days and be patient and inventive on the bad days. But I am human (and busy) and I want every day to be a clockwork machine filled with highlights of genius and buoyed along by hours of happy, harmonious play. I expect too much. If I can give Goldilocks one gift, it is this: I will take each day as it comes. I will enjoy it thoroughly, regardless of how it goes academically. I will cease to measure “success” in academic terms, which have so little relevance to daily life. I will simply delight in watching her unfold into who she is meant to be.

  8. Don’t expect too little

    Even so, what can be worse than realising no one expects you to amount to anything? I will not do her that disservice. As parents of unique children, we need to be ready to expect the unexpected. They will always surprise us, and very often those surprises will be good – wonderful, even. I will expect her best, and thus elicit it, always encouraging her to be her own, wonderful self. I will remember that my idea of success, achievement, and excellence are not the same as her reality, and I will be sensitive to my tendency to measure things too strictly. We must embrace all that these angels offer us, and let them know that it is good.

  9. Love her unconditionally

    What greater gift can a child have than a mother’s love. No matter what. On bad days and on good. When she’s messed up. When I’ve messed up. When things are messed up despite our best efforts. This above all I commit to do. I will not hold grudges. I will not be cold and distant. I will not be unclar and vague. As far as I can, I will not be distracted. I will be available. But above all, I will love.

Today, I’d love to hear from you. Are you facing similar challenges? What’s working for you? And what isn’t? What have I left off this list and where am I going wrong? Please leave me a comment and let’s start a discussion on this vital topic.

With love,

Vanessa

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.

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