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Autism And The Art Of Conversation

17 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Every night, I give my older son George a piggy-back ride to bed. These days are numbered, of course. George is almost nine and he’s all arms and legs. Someday soon, he will too tall and heavy for me to cart around on my back. For now, though, I treasure these last days of being able to pick up my son.

We get to his room, where I dump him unceremoniously on his bed. He tucks himself in while I turn off the light, and then I lie down beside him. For the next few minutes, it’s just him and me, alone in the entire world.

We talk. I ask him questions. He answers them.

Who does Mommy love? She loves George.
Who does George love? He loves Mommy.
How do you feel? Happy.
Did you have a nice day? Yes.
Where did you go? School.
What did you do there? Math.

Always the same questions. Always the same answers.

I follow this ritual for the sense of closeness between me and my son, because it’s a comforting part of our time together. I also do it to help him practice the art of conversation. His verbal communication skills are worlds behind those of typical kids his age. He knows how to talk, how to make requests and the occasional joke. He is starting to make the odd remark for social purposes, and not just when he needs something.

But he does not know how to have a conversation. So I am teaching him.

When George was first diagnosed with autism, he did not know how to point. Over a period of eleven painstaking months, during which I followed the same routine every single night, no matter how futile it seemed, I taught him how to point. I still cry when I think of the first time I was rewarded with him pointing independently.

If I could teach him how to point, surely I can teach him how to have a conversation. After all, they are both forms of communication, right?

From time to time, I switch up the questions during our nightly routine, and ask him something else. When I do that, he never answers the question I ask. He gives an answer to the question he was expecting. I don’t mind. It just shows that he’s not yet ready to move to the next level. There’s no rush. I can wait. It will happen when he’s ready for it to happen.

It’s OK that he has memorized the sequence of questions and answers. Children learn to read in much the same way, rote-repeating sentences that they have heard many times, before making the connection with the printed text. There is every reason to believe that George’s relationship with conversation could evolve in much the same way.

While I’m helping him learn a skill that will be of value to him for his whole life, I am treasuring those nightly moments we spend together.

(Photo credit: Kirsten Doyle)

The Good And The Bad

26 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 27 – 5 challenges, 5 small victories: Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

Autism can be a very complicated thing to live with. Its manifestations change from day to day. One day, my son will be able to tolerate loud noises but a small change in routine will send him into meltdown. The next, we’ll be able to turn his entire routine upside down but anything louder  than a whisper will set him off. Different strategies work for different kids on different days, and everyone you might see guidance from is convinced that their opinion is the right one.

The things I find most challenging about being an autism mom don’t really have to do with the autism itself. Whatever might be going on with my child on any particular day, I just deal with it. Sometimes it’s hard, but I always know that I’m doing my best, my son is doing his best, and at the end of the day we’ll all survive.

My challenges tend to come from sources other than my son and his autism. I list them in no particular order.

  1. The judgmental critics. It’s a moment every autism parent has lived through at least once. You and your child are in a grocery store, which let’s face it, is a mecca for sensory overload, and your child is getting more agitated by the second. You throw things into your cart at quickly as you can, but just as you get to the checkout, your child reaches his breaking point and explodes. As you are trying to calm him down, some snarky stranger loudly proclaims, “What that child needs is a good hiding.” I once heard someone say (referring to me), “If that mother was doing her job properly, this wouldn’t be happening.” Like I’m not already carrying around enough angst with me. With my social anxiety, I’m not great at the quick comeback, although I’m definitely better than I used to be.
  2. The third-person talker. These are the people who will talk about someone who is present as if that person were not in the room. The chances of this happening increase exponentially if the subject of conversation happens to have autism. I get it all the time. “Would George like a hamburger?” they will ask. My answer always seems to throw them a little: “Ask him,” I say. Yes, it is true that George is not the world’s greatest talker, and may not respond to everything that is said to him. But, you know. At least give the kid a chance to try. If he struggles to answer, I will help him.
  3. Guilt. I was educated at a girls-only Catholic school run by nuns, and I am married to an Irish Catholic man. I can therefore say with some authority that the Catholics turn guilt into an art form. And some of the guilt that I feel as a special needs parent (hell, forget special needs – just as a plain old parent) almost makes me think I should just convert. I feel guilty about everything. Did the Taco Bell I ate during pregnancy cause George’s autism? Did I give him enough affection as a baby? Am I paying enough attention to my other son? Did I get too mad at George when he tipped over the laundry basket?  The list goes on and on, and my guilt makes me constantly second-guess myself when I should just be following my parental instincts.
  4. Time. Time very often seems to be my enemy, so much so that I sometimes regard it as a person. Time with a capital T. No matter how much I try, Time seems to run away from me. At the end of each day, there is always something that remains undone. Parenting is my absolute number 1 priority, so my kids’ needs are always taken care of. But I tend to let other areas of my life slip occasionally, and that is detrimental to my physical and mental health.
  5. The Internet. When George was diagnosed with autism five years ago, the first thing I did when I got home was Google autism. I obsessively read web page after web page. Every link that I clicked on seemed to have some information that flatly contradicted something I’d read somewhere else, and in the end my brain was hurting from information overload. I was overwhelmed by not knowing what information to trust. Since then, I am wiser in my use of the Internet and I have learned, for the most part, how to tell the good information from the noise. But the Internet, with all of its gazillion theories about the causes of autism, can still hinder more than it helps a lot of the time.

In my house, there is no such thing as a “small victory”. Every single accomplishment, all of the positive things in our lives – are massive, big things. That’s the way it often is in special needs families. We tend to place extra stock in things that other families take for granted. And as hard as it can be to live with autism, there are many things that I am grateful for, that enable me to keep chugging along even at times when I just want to cry.

  1. Love. Love really does make the world go around. Out of all the challenges my son has, lack of affection is definitely not one of them. Both of my sons give the best hugs that I can carry around with me all day. My favourite moments are when my boys somehow manage to squeeze onto my lap together to give me a hug. I sit there, with my arms full of squirmy, giggling kid, and never want the moment to end.
  2. Running. Yes, running keeps me sane, and when something stops me from doing it – like illness or injury – depression starts to creep in. The fact that it keeps me in good physical health is almost a by-product of running. My prime reason for doing it, along with raising funds for autism, is to keep my mental health on an even keel. I struggle with mental illnesses like depression and anxiety, and there’s no better way to combat my darker moments than a good long run. I am stubbornly resistant to using medication to deal with my issues, and running acts as a decent substitute for chemicals most of the time.
  3. Therapy. It has been said that running is cheaper than therapy, and while that is certainly true, I actually do need both. The therapist/client relationship is a very strange one. It involves the client placing complete trust in someone they actually know nothing about. I have been going to my therapist for a little over a year now, and it has taken me almost all of this time to build up my trust to a level where I can really open up during my sessions. Sometimes the sessions are very hard and they make me feel all weirded out for a while, but the truth is that once a week, I get the opportunity to talk without reservation in the sanctuary of my therapist’s office. I can say whatever I like and there will be no judgment or anger.
  4. Writing. I am somewhat inept as a verbal communicator, and I experience high levels of anxiety in social situations. When I am talking to other people, I hold back a lot, not only because of my natural shyness, but because my brain actually doesn’t work well during conversation. I can formulate a completely coherent thought in my mind, and even mentally phrase how I want to say it, but when it comes time for me to speak, my words get lost somewhere between my brain and my mouth. With writing, that doesn’t happen. I truly have a voice, and I treasure the opportunities to speak my mind on things that are important to me.
  5. The Internet. The Internet is both a blessing and a curse. Despite the evils described in my “bad” list, the Internet is a haven of sorts. I belong to two Internet support groups – one for moms who have suffered pregnancy or infant loss, and one for parents of children with autism. Both of these groups are places where I can vent my concerns, ask for advice, or celebrate good news. Some of my best friends are people who I have known online for a long time, but have never met in person. Here’s the wonderful thing about the Internet: no matter what I am going through on any particular day, I will always be able to find someone who knows, at least to some extent, how I feel.

Pinning Down Autism

16 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 16 – Pinboard: Create a pinterest board for your health focus. Pin 3 things. What did you pin? Share the images in a post and explain why you chose them.

When I was pregnant with my older son George, I had to stop running because my sense of balance went pear-shaped. Over the next several years, I tried to get back into it but there was always something that stopped me. Injuries, time commitments, illness, you name it. One day, an email from the Geneva Centre for Autism got me going again. They were entering a team of runners and walkers in the Charity Challenge of the Scotiabank Toronto Waterfront Marathon/Half-Marathon/5K event. After briefly considering the 5K, I went for broke and registered for the half-marathon. The opportunity to do something for my son and the rest of the autism community turned out to be just the motivation I needed. Although I will be doing my fourth Run for Autism this year, that first finisher’s medal will always take up pride of place on my mantel. Every step I take on my autism runs I dedicate to my amazing son.

Einstein was a pretty awesome dude. As a child he was apparently not the sharpest crayon in the box, but his mom never gave up on him and he turned out OK. He made many discoveries, came up with theories that I cannot begin to understand, and said a lot of profound things. This one is my favourite Einstein quote. It is a perfect encapsulation of the idea that society is enriched by people thinking in different ways. George’s autism comes with all kinds of challenges. There are times when I want to cry with sadness or frustration. Some days are downright overwhelming. I often wonder if George will ever be able to communicate with other people. Despite all of the difficulties, though, George’s autism makes him think in truly unique ways. He can problem-solve rings around the rest of us just because he sees things in such different ways.

Autism is like a kaleidoscope. It can change and evolve over time. The behaviours and challenges exhibited by an individual with autism can be different from one day to the next. There are so many variables – adherence to regular routines, the presence or absence of loud noises, stress levels in the environment, even the weather. Not only does the real impact of autism change all the time, it is experienced in very unique ways by different individuals. I don’t know who it was that said, “If you’ve met one person with autism, you’ve met one person with autism.”

(To visit my Pinterest board, go to http://pinterest.com/running4autism/hawmc/)

Getting It Write

15 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 15 – Writing with style: What’s your writing style? Do words just flow from your mind to your fingertips? Do you like handwriting first? Do you plan your posts? Title first or last? Where do you write best?

The fact that my older son’s childhood development is almost a carbon copy of my own leads me to believe that I am somewhere on the autism spectrum. I had the same speech delays, the same geekiness with numbers, and the same tendency to play by myself in spite of being in a room full of other kids.

To this day, I experience social anxiety, although I have learned how to mask it well enough for other people not to notice. I am not fond of social gatherings where I do not know at least one person very well. During times of stress or conflict I struggle to coherently express my thoughts verbally. Let’s not even get started on the telephone. I am downright terrified of the telephone.

My ineptitude and discomfort with the spoken word is what led me to the written word. Writing is marvelous. It gives me a voice. It provides an outlet for the creativity that I have, to my complete surprise, discovered within me, and it eliminates the problem I have with conversation, where my words frequently get lost between my brain and my mouth.

When I was in high school, I used to get somewhat disillusioned when my creative writing projects were marked down “for lack of structure”. We had it drummed into us that our stories had to have a beginning, a middle, and an end. We were supposed to rigidly plan our essays and then stick to the plan. If the ending did not clearly tie in to the beginning, that was the mark of a Bad Essay.

The problem was that this whole beginning-middle-ending thing didn’t work for me. I understood the theory, but I couldn’t make my mind work in such a linear pattern. As long as the stuff I wrote made an impact, and as long as my readers were engaged throughout, did it really matter? Whenever I tried to write in the prescribed way , the finished product came across as stilted and awkward, and just not me.

When I started this blog just over two years ago, I promised myself that I would remain true to my natural style. I try to make sure my writing flows, and that it’s easy on the eye. I have a goal to leave my audience with some kind of message, whether it’s an idea, a call to action, or an emotion. How I accomplish that depends on my subject matter and what my state of mind is like as I’m writing. Sometimes my posts do follow a traditional structure, and when that happens, it’s just because the topic lent itself to that.

Many times, I will change direction midway through a post. I will allow my train of thought to drive my writing. In that sense, my blog posts are often a true reflection of how I think. They are a glimpse into the part of my soul that’s open for public viewing. I may struggle from time to time to come up with the first sentence, but usually, once I achieve that, I’m off and running. I don’t always go to where I had intended. My destination can be a surprise even to me.

The journey is always a lot of fun too.

(Photo credit: http://www.flickr.com/photos/kharlamovaa/6016780468/. This picture has a creative commons attribution license.)

The Cow Whisperer

15 Jul

It was a beautiful summer’s day in 2007. George, who was three months shy of his 4th birthday, had recently been diagnosed with autism, and James was 18 months old. Our world, which had been so badly rocked by the reality of having a son with a lifelong disability, was starting to stabilize a little, but at that point, we really didn’t know how much hope we should have.

The diagnosing doctor had emphatically – kindly, but emphatically – told us not to expect too much, ever. He had not given us a good prognosis.

On this particular Saturday, we packed the kids into the car with a picnic, and we went for a drive. We went in the general direction of some lakes to the north of us, but we had no fixed destination. We picked our route at random, taking whatever country roads we liked the look of. The kids were happy enough: we are fortunate to have been blessed with two fantastic car travelers.

All of a sudden, we heard George’s voice piping up from the back seat: “Cow!”

The van shuddered a little as we screeched to a halt. Back then, hearing George say anything at all was a cause for celebration. We turned around and looked at him, sitting there in his booster seat.

“What did you say?” I asked, trying to sound nonchalant.

“Cow!” he said again, his eyes gleaming with excitement.

I turned to Gerard. “I guess George saw a cow,” I told him.

Without hesitation, Gerard did a three-point turn on the narrow country road, and we slowly headed back in the direction from whence we had come.

It took less than a minute for us to see them: a field full of cows, lazily flicking their tails as they chewed on the long grass.

“Cow! Cow!” yelled George. The kid was practically levitating, he was so excited.

We parked on the side of the road and got out of the car so George could see the cows. The kids ran ahead of us to the fence, James tottering slightly on his chubby little toddler legs. We all stood at the fence together, silently watching the cows, who looked back at us with apparent disinterest.

Thinking that this would make a nice picture of Gerard and the two boys, I dug in my bag for my camera. The confounded thing had fallen right to the bottom of my bag, so I had to put in about two minutes of dedicated scrabbling. When I looked up again, I was confronted with the most remarkable sight.

There was Gerard standing slightly in front of the fence holding James’ hand. There was George, a little way further down the fence. And there were the cows – all thirty or so of them – flocked right up close to the fence where George was. They were showing zero interest in the rest of us, but they were utterly enthralled with George. He was fearlessly sticking his hands through the fence, and they were gently nuzzling him and softly mooing at him. In turn, he was smiling tenderly at them, with a look of absolute wonder in his eyes.

It looked like my son had some kind of cult following of cows. Like he was their god or something.

I wasn’t merely witnessing a little boy stroking a bunch of cows. I was witnessing this incredible moment of communication between boy and beast, a moment that was so incredibly powerful and beautiful.

George, like most people with autism, has trouble interacting with the rest of the world. But at that moment, he was in perfect harmony with the world, in a way that I can only dream of.

(Photo credit: http://www.flickr.com/photos/roymontgomery/3993908201)

Lost For Words

13 Jan

I think the Internet was the best thing ever invented.  OK, make that the second best thing, after coffee, which when you think about it, wasn’t actually invented in the true sense of the word.  One reason the Internet is so great is that it enables me to keep in touch with people without actually having to talk to them.

Lord, that sounds awful, doesn’t it?  It makes me sound like an arrogant, antisocial jerk who doesn’t care about the people in her Facebook friends list.  Let me assure you that this is not the case.  I care about people a great deal, and my friends are very, very important to me.  I realize that this is the kind of thing that anyone would say, even people who would sell their grandmothers to the devil.  But I really do mean it. I have my fair share of faults, but I believe that the people I care about would describe me as a good and loyal friend.

So when I say that I want to keep in touch with people without talking to them, it’s not the actual people that I have an aversion to.  It’s the talking.

Let me pause for a moment to say this: what I am sharing today is a glimpse into a part of my life that I have difficulty with.  It is something that, while not exactly earth-shattering, is not easy or comfortable to talk write about.  And while there are certain aspects of my life that I will never share publicly, I just-about-kind-of-sort-of feel brave enough to discuss this.

You see, all my life I have suffered from pretty intense social anxiety and awkwardness. While I always enjoy being around people, I frequently don’t know what to say when I’m with them.  Or to put it more accurately, I know what I want to say but I find myself unable to say it.

Are you confused yet?

Here’s what it’s like for me.  I often find, when I am talking to people, that I am able to formulate an idea in my head.  I can script the words I want to use in order to verbally express that idea.  But when it’s actually time for me to utter those words, I cannot.  The best way to describe it is that the words get lost somewhere between my brain and my mouth.  It’s as if the synapses in my brain that are responsible for translating thought into speech just aren’t firing.

Picture yourself sitting in your car in your driveway, intending to drive to the post office, and suddenly discovering that all of the roads between your house and the post office have suddenly disappeared.  So you sit in your car at home, at a loss as to what to do.

Or if you’re me, you sit there not taking part in the conversation, and people just assume that you don’t have anything to say.  And you get more and more frustrated because you do have something to say, but you are unable to say it. Or when you can say it, you sound awkward and stilted, and because this whole conversation effort is so stressful, you come across sounding abrupt or disinterested or babbling in an uncomfortable way.  If I’m in a situation of conflict with another person, this problem multiplies a hundredfold.

Some people who know me personally are probably reading this and going “Huh?”  This verbal debilitation I experience is not visible to everyone – a lot depends on who I’m talking to and what the circumstances are.  This problem is a disability of sorts, and people with disabilities learn how to adapt, and how to live life as seamlessly as possible without letting the disability take over.  But even at times when I give the appearance of having a normal conversation, I am capable of feeling a level of anxiety that most people probably cannot relate to.

Although certain events in my life may have exacerbated this issue, it is really something that I have always lived with.  I had a variety of developmental delays as a child, and only developed a reasonable level of functional speech at the age of five.  Throughout my childhood and adolescence, my social development was far behind that of my peers.  At an age where most of my contemporaries were going to parties, acquiring boyfriends, and traveling in large, noisy packs, I was the quiet, awkward one who never said much.  My social anxiety was frequently misconstrued as shyness.

As an adult, this has impacted my life in a number of ways.  Certain events in my life can be attributed at least partly to the fact that I did not have the social skills I needed to deal with things differently.  These events have ranged from the minor events that you forget about the next day to the bigger events that stay with you for life.

My social interactions tend to vacillate between two extremes: one the one end, I kind of clam up and don’t say anything.  On the other end, I talk non-stop, saying inconsequential stuff to cover up the anxiety I feel.  In the middle of these two extremes are the “normal” interactions I enjoy with my family and my closest friends; with people that I have a high degree of trust in.

Telephones terrify me.  Seriously.  I hate the things.  If I could get through life without ever talking on the phone, I’d be happy.  When I do find myself on the phone, I get the hell off as fast as I can.  Again, there are exceptions.  My Mom?  I could talk to her on the phone all day.

I love to write.  Love, love, love it.  My tendency to lose words does not extend to my writing – in fact, I have a theory that my writing skills have developed pretty well in order to compensate for the difficulties I have with oral communication.  This is a good outlet for me.  It is a way for me to share a part of myself with the world, without going through the anxiety that I might otherwise experience.

I find my social anxiety issues to be disabling at times, but being the eternal optimist, I strive for things to be better.  I adapt, I compensate, and I seek opportunities to overcome.

(Photo credit: Flickr Creative Commons Attribution License)

Social uncommunication

1 Nov

Today is a big day for the autism community.  It is the day of the global communication shutdown, in support of individuals who spend their lives on the autism spectrum.  Those participating in the shutdown are voluntarily doing without Facebook and Twitter for a day. The idea behind this is for us to experience for one day what our loved ones with autism go through as part of their daily lives – the frustration and feeling of lostness that comes with not being able to communicate.

For all intents and purposes, Facebook and Twitter do not exist for me today.  The only thing that will be posted under my name to my Facebook wall will be the auto-publish of this post.  If anyone tags me in comments or pictures today, I will not know it. If anyone messages me – either privately or to my wall – they will have to wait until tomorrow for a response.  I will not find out until tomorrow morning whether anyone helped me win Fast Money in the Facebook Family Feud app.  I have not gotten to see anyone’s Halloween pictures, I don’t know how my Scottish friend’s job interview went, I don’t know what anyone’s up to today. Much of what happens today I will probably never know about, because by the time I get back onto Facebook tomorrow, it will be old news.  Same with Twitter.  If anyone is waiting on the edge of their seats for tweets from me, they’d better settle in for the long haul.

It’s an interesting experience, partly just because of the habit of it. Giving up Facebook for a day is a bit like giving up smoking for a day (actually, there’s an idea: a global non-smoking day in support of those affected by cancer). I remember what it was like when I gave up smoking fourteen years ago. One of the hardest aspects of it was simply breaking the habit of physically picking up and lighting a cigarette after a meal, or as an accompaniment to my morning coffee.  Similarly, it is now my custom in the mornings to pour myself a coffee and drink it while first reading emails, and then seeing what’s going on in Facebook Land. I almost clicked the Facebook icon today just because it’s what I always do.

So what I am I learning from this experience? Do I feel a better sense of understanding for what my son lives with?

To be honest, probably not. Oh, don’t get me wrong. I do feel the frustration of non-communication. I do feel that I am cut off from a part of my life that I have grown to be dependant on, and in a sense, I am feeling a sense of what it is like for George. But I am mindful of the fact that I am doing this by choice.  I know that it is a one-day thing, and that tomorrow I will be able to catch up on much of what I am missing today.

George lives with his social communication difficulties day in and day out. He has not chosen to separate himself from the world. He cannot make the choice to wake up tomorrow and be fully verbal and socially conversant.  Tomorrow, when I return to the world of social media, George will still have autism.

I am still glad that I and thousands of other people have done this. Maybe, in some small way, this global effort will make the world a better place for George and people like him.  Maybe the people who have chosen to be a part of this shutdown will, in the future, be a little more tolerant of children they see having meltdowns in public. Maybe someone will give a job to someone with autism. Maybe a politician, somewhere in the world, will vote in favour of a bill to help special needs individuals.  If a child has trouble getting a point across in a classroom, maybe the teacher will recognize the possibility of autism instead of dismissing the child as “stupid”. Maybe a doctor will finally listen to a mom who has been begging for an evaluation referral for her child. Maybe this shutdown will lead to a lot of little good deeds that will have a ripple effect throughout the world.

Today will not enable me to know what it is like to be autistic. But it does give me hope for a future in which people with autism are recognized as valuable, integral parts of the fabric of human society.