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

Posts tagged ‘Autism Spectrum’

Empathy

It’s taken us a very long time to get to a point where the words “autism spectrum condition” form a part of our daily family lexicon. As I’ve described many times before, this had a lot to do with our definitely-not-neurotypical daughter, Goldilocks, showing certain traits that can only be described as being diametrically opposite to the ones on the many lists of “autism symptoms” we’d found.

Since then, we’ve discovered that the lists are wrong.

The lists describe what outsiders are able to observe. And no one can get into anyone else’s brain. Not ever. Not really.

So while an autistic child might appear not be communicating, or hearing, or seeing, or feeling, the opposite could very well be true. I suspect that it usually is.

One area where Goldilocks breaks the mould is empathy. Sometimes she lacks the words to express what she feels. And sometimes she really battles to grasp how another person can feel what they feel, when it is so very different to her feelings. Especially when the other person’s view appears to contradict plain common sense or good behaviour.

What she doesn’t lack, though, is the capacity to feel. Oh no. She feels deeply and completely. And she feels everything. The emotions consume her, and she lacks the ability to process them, sometimes. There’s simply so much to feel: her own feelings, the feelings of others, the thoughts those feelings give rise to, the judgements she senses or imagines … sometimes it’s just too much. Sometimes, we have melt downs.

When that happens, we sit quietly together, both facing the fear and soothing the fever, calmly talking about what frightens us and what makes us happy. I stroke her back or play with her hair or just hold her until the storm is passed.

When it’s over, the sunshine and bubbles are back. There’s mischief and joy and light. Balance is back. The cloud has gone. But the ability to feel? Nope. That never goes.

It’s not less. It’s so very much more.

Feeling everything

When you’ve read this, please read this. An important piece on why our perspective of empathy matters.

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.

On parents of ASD children

I found this beautiful passage on a Facebook group I belong to, Action in Autism, and it’s both thought-provoking and comforting.

Things Autistic Children Wish You Knew … About Their Parents.

10. I wish you knew that God chose my parents for me because they are SPECIAL just like ME.

9. I wish you knew that just because our home is sometimes messy, that does not mean they are dirty or lazy. And just because my mom’s roots are showing, my dad is not clean shaved or their clothes do not match today, does not mean that they don’t care about themselves anymore; it just means they are too busy caring for me instead.

8. I wish you knew that because they sometimes wear their heart on their sleeve, does not mean they are weak. In fact, they are the strongest people that I know.

7. I wish you knew that just because they don’t do all the stuff they use to do, like go to family gatherings or hang out with friends very much anymore; it does not mean that they don’t want to. It is because they put my needs a head of their wants. They know that it is just too much for me to handle.

6. I wish you knew that my parents would like for everyone to become more aware of autism. Autism is growing at a rate of 14% a year and 1 in every 110 children are being diagnosed. That means it may not be your kid, but at this fast growing rate, maybe it might be your kid’s child that suffers from this disability.

5. I wish you knew that just because you might not have the same beliefs about how they should be parenting me, how autism is caused, what treatment they use for me and whether they believe autism can be cured or not, does not mean that you cannot listen and at least consider how they feel. You have not walked in their shoes and until you do, you should hold your opinions to yourself.

4. I wish you knew that because I may appear to look just like everyone else, I am not. Sometimes I scream, can’t sit still, invade your space, bite, hit or throw myself to the floor and you may feel that my parents are not holding up to your “standards” of parenting in these situations. It really means that they know more about autism than you do and punishing me for something that I have no control over would be plan cruel and that would be bad parenting.

3. I wish you knew that when I am out in public and suffer a meltdown, your stares, do not hurt me because I don’t even notice. However, those stares and nasty comments do hurt my parents and family. This is a hard time for us and you being rude does not make it any easier. We have a right to be in public without scrutiny, just like everyone else.

2. I wish you knew that just because I may be non-verbal or learn different from everyone else, it can make me an easy target for bullying or even abuse. I want you to know that if you hurt me in this way, you better hope the authorities take care of you before my parents have a chance to get a hold of you.

1. I wish you knew that because I may not show eye contact to my parents, hug them or even tell them that I love them does not mean that I don’t care about them. Like I said above, my parents are SPECIAL and through all of that, deep down they can feel my love, my heart and my soul and know that I love them more than any words could ever say. They are my hero.

~ By Always Unique Totally Intelligent Sometimes Mysterious.

 

A special kind of different

As we discover more about the different learning styles I mentioned previously, I realise just how lucky I have been, and how I have been blind to my good fortune (or “blessedness”, if you prefer). Of the eight intelligences, I operate best in the mode most suited to learning in a classroom: words. I have all the tools to succeed academically. Lucky me! However, I form part of a group that comprises only about an eighth of the world’s population. In other words, 12.5%. The other 87.5% simply doesn’t learn well in “traditional” learning paradigms. The solution, these many years, has been to identify the lucky ones among as “gifted” and “dedicated” and “achievers”, and the rest as “problem cases”. As far as I can tell, the tactile-kinesthetic learners (those who need to move and touch and do and experience in order to learn) have the hardest time at all. A classroom is not the place for them. Not only is it incredibly challenging for them to learn in this way, but they are also demonised for trying to learn in their specific way.

Ironically, the tactile-kinesthetic learners are the polar opposite to me. If I can help it, I prefer NOT to touch or move, although I do learn by doing almost as well as by reading or hearing. And of course, guess which style both my children exhibit? Bingo.

So life is an interesting learning curve for all of us, as we focus on squeezing as much personal growth and development out of every moment of every day as we possibly can, experimenting along the way.

All of that is a giant and distracting preamble to the point of this post (*cough*ADD #JustSayin’) <– I can hashtag my own posts ‘cos I work in social media ;).

The point of this post is to share an article I read recently, which is very interesting indeed. It is “Take the green pill” : how to learn anything easily and effortlessly… by Joe Seeber. 

As he explains:

When it comes to learninghow to learn anything

… the most important factor is your mindset.

If your mind’s not right then you’re going to struggle with learning and grasping information.

This really resonates with me, and now more than ever. While I’ve never battled with academic learning, it’s been ages since I’ve applied myself to the process. In recent years I’d fallen prey to the notion that perhaps I was simply “too old to learn anything new”. Bah! Since I broke the shackles of that kind of thinking, my mind is full of new and fascinating ideas all the time, and I really feel like I could learn anything – even astrophysics – if I wanted to (and I kind of do).

But enough about me. Head over to Joe Seeber’s blog, read that article, and then tell me what you think in the comments below. I’d love to hear from you.

~ Vanessa

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

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

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. “

Tag Cloud